tag:blogger.com,1999:blog-1290302415254791452024-03-12T18:46:18.777-10:00Lily-kayda's Family and Their Tales of Terrorizing TumorsIn October 2008, 3 year old Lily was diagnosed with 2 types of Cancer. In 2012 her mom was diagnosed with 2 types of cancer. Here are the current updates on Lily's family, their tumors, treatment and living with Li Fraumeni Syndrome. 4monkeyshttp://www.blogger.com/profile/12770518256915325592noreply@blogger.comBlogger467125tag:blogger.com,1999:blog-129030241525479145.post-78231375131552084842020-06-16T11:51:00.000-10:002020-06-16T11:53:36.440-10:00Not Ok. Waiting for Rebirth of OK. On the scale of fine to not ok. NOT OK. <div>Not REMOTELY OK.</div><div>I KNOW NO ONE IS OK right now. </div><div>It doesn't help to compare, compete, or criticize in this stage of the quarantine. or cancering. or living.</div><div><br /></div><div>Medical long story short: Still getting some sort of treatment every Wednesday. Joint pain getting worse, shortness of breath, GI issues, mouth sore still hasn't healed. My onc retired and we are breaking in a new onc- who so far has gotten the memo on the complicated high maintenance patient I am. We've dose reduced abraxane and avastin again, I have appointments with rheumatology, GI, oral something, and working our way up to scoping of invasive kinds to figure something/ anything out- which I will do only when I feel the environment is safe and my body has some ability to heal. I'm fatigued, chemo brainy and shakey. Not my best advocate right now and a shitty time not to be able to have my best advocate with me. My memory is mom brain meets chemo brain meets over tired on crack. I just keep telling myself- it's not a toomah. hopefully. I am so grateful for the help I had getting through the really rough past 6 months. From friends' care pre quarantine, during quarantine- to smiling faces singing outside from the sidewalk to driveby waves and dinner drop offs. I got so excited to see my friend Angel at Tripler- I ran( and by run I mean waddle weirdly) up to her and hugged her. The look of shock on her face was precious- both of us always worried about the other more. My sweet Ano looked so much better. I look forward to hugging Alyssa on chemo days- she gets the kids out of the house and makes sure things are picked up and has soup waiting. I never feel like talking, yet somehow our visits are now one of my favorite lifelines. </div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-eXpbEmhssOI/Xuk9ORt5SkI/AAAAAAAAIOc/qShxqQkkJq0ZJnwXzMfhJA7Oko4SjyTIgCK4BGAsYHg/s640/IMG_0573.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="480" data-original-width="640" src="https://1.bp.blogspot.com/-eXpbEmhssOI/Xuk9ORt5SkI/AAAAAAAAIOc/qShxqQkkJq0ZJnwXzMfhJA7Oko4SjyTIgCK4BGAsYHg/s320/IMG_0573.jpg" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">When both cars decide to give you grief. </td></tr></tbody></table><div><br /></div><div>Stream of conscious update inspired by Digable Planets: Rebirth of Slick (Cool like dat.)</div><div><br /></div><div>So I get up each day, stretch out the kinks, grab a coffee and banana sit out back and take the must take first meds. By the end of the coffee- Phil is ready for work- one of the many things I am grateful for despite it making life stressful- life without income housing and healthcare right now would be more stressful. Quarantine just be like dat.</div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-r2anRduW_k0/Xuk8QLfPCII/AAAAAAAAIMs/bDAc7J08EjUCTyvFEuQmawnMgmdcYTwnACK4BGAsYHg/s2016/61118957524__4E403A5B-AD1C-47BC-BD4A-7D0D5913ACF2.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1512" data-original-width="2016" src="https://1.bp.blogspot.com/-r2anRduW_k0/Xuk8QLfPCII/AAAAAAAAIMs/bDAc7J08EjUCTyvFEuQmawnMgmdcYTwnACK4BGAsYHg/s320/61118957524__4E403A5B-AD1C-47BC-BD4A-7D0D5913ACF2.JPG" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">My morning view.</td></tr></tbody></table><div><br /></div><div>He cooks me an egg for round 2 of meds and on cool days I stay out side until med dose 3- watering plants-which is to say trying to save them from imminent death which honestly feels kinda like ALL I do these days: try to stave off death of all sorts. Sometimes he eats with me, sometimes he takes Dobby for a walk, sometimes he has to go right into work. We like to keep it cool like dat.</div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-1CpTMH6m9rg/Xuk8W8J8ToI/AAAAAAAAIM8/qYmMKgltRlEoG96Jvei7meBpsiPAbfbkACK4BGAsYHg/s2016/IMG_0238.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="2016" data-original-width="1512" height="320" src="https://1.bp.blogspot.com/-1CpTMH6m9rg/Xuk8W8J8ToI/AAAAAAAAIM8/qYmMKgltRlEoG96Jvei7meBpsiPAbfbkACK4BGAsYHg/s320/IMG_0238.jpg" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">After work, work call.<br /></td></tr></tbody></table><div><br /></div><div>I head inside to my corner in my room- a view of the rooftops and sky, Dobby tucked next to my left thigh. Sometimes I digital Scrapbook, write out cards, catch up with nonprofit stuff, text friends, or stare at the wall and cry. I don't know why I sit and cry, perhaps I'll die. I like to keep it quarantine like dat. </div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-yQMZAoZxnlU/Xuk8co9AJzI/AAAAAAAAINI/K6zoGn3EMDY9bbAzQ4eDThD41VzoXx0FgCK4BGAsYHg/s640/IMG_0574.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="480" height="320" src="https://1.bp.blogspot.com/-yQMZAoZxnlU/Xuk8co9AJzI/AAAAAAAAINI/K6zoGn3EMDY9bbAzQ4eDThD41VzoXx0FgCK4BGAsYHg/s320/IMG_0574.jpg" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">You wanna sit here?</td></tr></tbody></table><div><br /></div><div>Phillip is at home, not working, not schooling, just quarantining. We send him on errands, he drives us around. None of which he ever wanted<br /><div class="separator" style="clear: both; text-align: center;"><br /></div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-a9WGE5pdgCo/Xuk67fu4QxI/AAAAAAAAILM/EtwS3EIQuLQRI60im5PJh7bYxWqDVGnZgCK4BGAsYHg/s1544/IMG_0329.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1158" data-original-width="1544" src="https://1.bp.blogspot.com/-a9WGE5pdgCo/Xuk67fu4QxI/AAAAAAAAILM/EtwS3EIQuLQRI60im5PJh7bYxWqDVGnZgCK4BGAsYHg/s320/IMG_0329.jpg" width="320" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">One of our drives.</td></tr></tbody></table><br /> We love him to death. He's smart and kind and will figure it out. In a world of hate and idiocy, intelligence and kindness are qualities we value. I want him to find happiness, which is in very short supply right now. We talk in bits, he helps run errands and sometimes cooks. He still works out- making those gains. There are talks of his going back to work, we balance the benefits and risks to our health. So we wait and guide and hope and don't talk about it in polite society, because well we don't go out in polite society in quarantine like dat.</div><div><br /></div><div>Kiera after months alone in a dorm, rocked her way through her first year of college in Denver. I am beyond proud of her independence and remember acutely feeling the need to be independent. We are grateful to so many kind friends who kept in touch and brightened not only her birthday in isolation, but so many days! I remember overscheduling(what me?) and see her doing it and am so grateful she knows when to call in help and my mom is only a short way away. She made her way to Ohio and is staying with my cousin who graciously and fearlessly adopted our hospitality major for the summer and can put her to work at her hotel. Family rolls quarantine like dat.<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-R-z2iRocIgA/Xuk8izHTE-I/AAAAAAAAINY/pjez43zkLqI7g3ZV6oxBufEutlVChyWsACK4BGAsYHg/s640/IMG_0594.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="474" height="320" src="https://1.bp.blogspot.com/-R-z2iRocIgA/Xuk8izHTE-I/AAAAAAAAINY/pjez43zkLqI7g3ZV6oxBufEutlVChyWsACK4BGAsYHg/s320/IMG_0594.JPG" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">excuse crappy editing...<br /></td></tr></tbody></table></div><div><br /></div><div>Lily finished school and bounced right into summer school- ironically enough PE. Which is lead by a morning person, so 8 am is pretty lively. If I am near her room, the only thing that comes to mind is:what is that zumba? She spends most of her time painting gifts for friends and art to sell for St. Baldrick's which will be in September. She has some beautiful pieces. She also is my favorite at home nurse. She has the best hugs and I need them a lot. She keeps me fed and watered and medicated and tissued. She has this great menu she prepares weekly for Phil's Costco runs and we try to divvy up who cooks. Lily is just da quarantine bomb like dat.<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-BgG02MPBxJM/Xuk8qqDZlgI/AAAAAAAAINo/4l3RkQJ0uWkm8-MHJiBz8kD8WbcaIRDzgCK4BGAsYHg/s640/IMG_0473.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="640" height="320" src="https://1.bp.blogspot.com/-BgG02MPBxJM/Xuk8qqDZlgI/AAAAAAAAINo/4l3RkQJ0uWkm8-MHJiBz8kD8WbcaIRDzgCK4BGAsYHg/s320/IMG_0473.jpg" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Look out Bob Ross.<br /></td></tr></tbody></table></div><div><br /></div><div>Bella started a Save Gary the Fish campaign in April. She squeezes in minecraft, playing piano, odd musical instruments and summer school Algebra prep in between nursing him. We've also learned Bella likes to help me in the yard- seems like we are matched in the trying to keep things alive area. Gary is a red betta fish that was returned to our local pet shop. I think she and Phil misinterpreted my disenfranchisement with Amazon - we need to shop local more- declaration to heart. Gary the fish has issues, so he fits right in here. By week two we were trying to figure out dropsy and fin rot in his tropical SpongeBob habitat. He was obsessed with bubbles- bubbles bubbles my bubbles. He actually interacts with us. I knew we were fooked. So round 4 or 5 of Gary side up, really gray around the gills- we discussed palliative care or possibly hospice. We made funeral arrangements- Gary will be given a backyard viking funeral involving a kid pool, some sort of fire flinging and a popsicle stick raft. We switched things up. Meaning Phil upgraded the living situation. Gary made a remarkable recovery, until this morning. Much panic, fear, tears. He's hanging in, but my friends it doesn't look good. But then then again he may not. Bella won't let Gary go down in quarantine like dat. </div><table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto;"><tbody><tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-UpngLtmc6bM/Xuk8w1ZxtSI/AAAAAAAAIN0/AkhdJilFin8P6JTTZfhx_nT4DbXN0XtdQCK4BGAsYHg/s640/IMG_0600.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="640" data-original-width="480" height="320" src="https://1.bp.blogspot.com/-UpngLtmc6bM/Xuk8w1ZxtSI/AAAAAAAAIN0/AkhdJilFin8P6JTTZfhx_nT4DbXN0XtdQCK4BGAsYHg/s320/IMG_0600.jpg" /></a></td></tr><tr><td class="tr-caption" style="text-align: center;">Gary's inpatient room. </td></tr></tbody></table><div><br /></div><div>I've gotten quite a few messages asking how Phil is handling "things". In my mode of not comparing, competing or criticizing, I simply explain- as a privileged white woman, I don't feel qualified to weigh in on the absurdity of the hate in a time like this, that like much of the US and World,<div class="separator" style="clear: both; text-align: center;"><a href="https://1.bp.blogspot.com/-pQuioVoGa18/Xuk9FxLpqrI/AAAAAAAAIOQ/lRe-DofSm_Y4yeF5PILuvVx_vrD0xkYMACK4BGAsYHg/s640/IMG_0599.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="640" data-original-width="480" height="320" src="https://1.bp.blogspot.com/-pQuioVoGa18/Xuk9FxLpqrI/AAAAAAAAIOQ/lRe-DofSm_Y4yeF5PILuvVx_vrD0xkYMACK4BGAsYHg/s320/IMG_0599.jpg" /></a></div> he is struggling. He is struggling to make sense of the senseless. He is feeling intense sadness, grief over the events happening. He spends a lot of time explaining or trying to civilly point out the blind spots and that phrases like 'separate but equal' should not be used jokingly or otherwise in today's society. He spends a lot of time guiding, leading others to make the right choice only to feel helpless when it does not seem to impact the outcome. Yet in true Mallory style, we persist on the off chance that if we can improve or impact on even a small scale, it is worth it. You know life, exacerbated by pandemics and stupidity and racism and cancer. The pandemic sucks. The stupidity sucks. The cancer sucks. The racism sucks. None are new, just nonproductive to civilized society for so many reasons. If you can't do anything, be kind. If only more could be chill like dat. </div>4monkeyshttp://www.blogger.com/profile/12770518256915325592noreply@blogger.com0tag:blogger.com,1999:blog-129030241525479145.post-76303617842999066052020-04-09T14:40:00.000-10:002020-04-09T14:40:01.963-10:00Cancer in the time of Covid-19Do you think Corona Beer Co- after all publicity is good publicity found the line of - yeah except THIS publicity....dang now that's OVER the line. Although sales did go down- I think mutant purchase of Corona went up mega fold- cuz that's how we roll. Have you washed your hands lately?<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-alkZDchtwQA/Xo-VDmTZrkI/AAAAAAAAHWk/bIoaXhCDVHMaMafc59FuhF71VSIJDQBJwCLcBGAsYHQ/s1600/cancer%2Bcovid.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1143" height="320" src="https://1.bp.blogspot.com/-alkZDchtwQA/Xo-VDmTZrkI/AAAAAAAAHWk/bIoaXhCDVHMaMafc59FuhF71VSIJDQBJwCLcBGAsYHQ/s320/cancer%2Bcovid.png" width="228" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">How it feels.</td></tr>
</tbody></table>
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
</div>
This article inspired me to update:<br />
<br />
<div style="text-align: center;">
<a href="https://www.curetoday.com/share-your-story/why-people-with-cancer-are-my-guides-during-a-global-pandemic?fbclid=IwAR1p84GmZbxIowMJXaB1D6_YrNED867FX84PC0heTafczyddI4b8F7MkzjQ" target="_blank">Why people with cancer are my guides during a global pandemic.</a><br />
<br />
<div style="text-align: left;">
<span style="color: #073763;">KEEP PERSPECTIVE-EVEN IF IT IS DELERIOUSLY INAPPROPRIATE. MAYBE JUST KEEP IT TO YOURSELF. </span></div>
<div style="text-align: left;">
I've lived with cancer in my body for over 8 years. I've lived with cancer, the clear and ever present danger for almost 35 years. I've gathered a few survival tidbits from experience and also the grievous realization that sometimes you can do everything right and it doesn't help and someone can do everything wrong and survive. One reason, "right" is in the eye of the beholder. Another is that there are a lot of factors- like luck. I'm pretty sure luck may hinge on handwashing. I'm either the luckiest or unluckiest lady in the world. Depends on how you look at it. I see lucky. I feel unlucky a lot- but I look for the lucky. I can control that part.</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-XKKi9Q77Q80/Xo-j8a03dlI/AAAAAAAAHW8/a29itcClBsIl-I8wdlEv6AxyIWsESIGEACLcBGAsYHQ/s1600/Screen%2BShot%2B2020-04-09%2Bat%2B12.38.09%2BPM.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="604" data-original-width="822" height="235" src="https://1.bp.blogspot.com/-XKKi9Q77Q80/Xo-j8a03dlI/AAAAAAAAHW8/a29itcClBsIl-I8wdlEv6AxyIWsESIGEACLcBGAsYHQ/s320/Screen%2BShot%2B2020-04-09%2Bat%2B12.38.09%2BPM.png" width="320" /></a></div>
<div style="text-align: center;">
<span style="color: #073763;"><br /></span></div>
<div style="text-align: left;">
<span style="color: #073763;">DON'T DIE IF YOU CAN HELP IT</span></div>
<div style="text-align: left;">
Before Christmas- I was pretty sure I was fastracked for the deathmobile. Six feet under, worm meat(I do want to be cremated for the record- no plot of earth needs the toxins that are in my cells, even after handwashing.) By Valentine's(our wedding anniversary) we had begun the long climb back up the ladder to marginal health when an abscess shoved me down again. And then there was CORONA. duh duh donnnn. Oh hell I just wanted to make it through birthday season- please don't let me f#@! up anyone's birthday by dying. Back to crowny viruses from hell. </div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
<span style="color: #073763;">HAVING A TARGET ON YOUR BACK SUCKS- GO LIVE ANYWAYS</span></div>
<div style="text-align: left;">
<i>It seems to affect elderly and at risk most severely.</i> RUFKM? That's like my entire circle. Family, friends- the lot. I have a daughter away at college(a compulsive handwasher, fortunately), 2 at risk offspring at home and a husband with a very essential job. Which could mean...he's never home during yet another crisis- orrrrr he has income and healthcare during a pandemic.(perspective) Let's now consider my health status...not exactly lungalicious, despite making HUGE strides with the new chemo. BIG. I meant to share- because it's HEEEEEWGe. </div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-FyYiEVCqL_g/Xo-njVzNOYI/AAAAAAAAHXQ/yZOh7N3HQagw4GninlOynHlRwV-tqnpLgCEwYBhgLKs0DAMBZVoDtSHgeYlM--jdvPoGJM1G1wrFqcmqADjxob1hohEz_Cdn8ZrBxNWBNxbSHE7NCwXHPXhjdYvHsOyOKZYzBQI_SH5iPAFJ3AlO3D9xCrHpqx4cYjGueNnEYNjxAEiZDgckwUC4LEdVOX_VS_hWuWLf1qtPPvyCP34ReAA_NmslWmPftYraK4DlACF956CzaSiOwyRZyIhhFbLJ-kh9Sm1s_TcBFLgusoz00hrnEyz5zG_1yMJAiAoE4nR7VJymDqd_Z0m_Lo0uI04h06krnVht4lWC1poLfFtNJXNSsEyryPNDPwixAWWlz2xrV-XBfwfhBFId1daEZ_tfFc2qyqdv-JkOppx17_tem9sJxGPlcxZQ8fFL2dFbxf85mmwVTjkVIgvXRuLFUlob5m_uxuezJLCAq2INw22eiKajhoxQNmxiMh_I09no0F3wUYbTQ3mFnaELythSEHjjbnhqlNscNfAM8VPEip0SKnCZIY-4t4Iyg2JQ7S-gJBoWRqx9b6becJC3OKn6QEaupFIDRBQpVkN9jDVYMqqNqvXDoPxeMbdgEUhdQ_DKL0SqfaoeBWR1KViIajGNrpdNLtqWu1w52y2sCj5XeAMIw_dO-9AU/s1600/scans.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1600" height="320" src="https://1.bp.blogspot.com/-FyYiEVCqL_g/Xo-njVzNOYI/AAAAAAAAHXQ/yZOh7N3HQagw4GninlOynHlRwV-tqnpLgCEwYBhgLKs0DAMBZVoDtSHgeYlM--jdvPoGJM1G1wrFqcmqADjxob1hohEz_Cdn8ZrBxNWBNxbSHE7NCwXHPXhjdYvHsOyOKZYzBQI_SH5iPAFJ3AlO3D9xCrHpqx4cYjGueNnEYNjxAEiZDgckwUC4LEdVOX_VS_hWuWLf1qtPPvyCP34ReAA_NmslWmPftYraK4DlACF956CzaSiOwyRZyIhhFbLJ-kh9Sm1s_TcBFLgusoz00hrnEyz5zG_1yMJAiAoE4nR7VJymDqd_Z0m_Lo0uI04h06krnVht4lWC1poLfFtNJXNSsEyryPNDPwixAWWlz2xrV-XBfwfhBFId1daEZ_tfFc2qyqdv-JkOppx17_tem9sJxGPlcxZQ8fFL2dFbxf85mmwVTjkVIgvXRuLFUlob5m_uxuezJLCAq2INw22eiKajhoxQNmxiMh_I09no0F3wUYbTQ3mFnaELythSEHjjbnhqlNscNfAM8VPEip0SKnCZIY-4t4Iyg2JQ7S-gJBoWRqx9b6becJC3OKn6QEaupFIDRBQpVkN9jDVYMqqNqvXDoPxeMbdgEUhdQ_DKL0SqfaoeBWR1KViIajGNrpdNLtqWu1w52y2sCj5XeAMIw_dO-9AU/s320/scans.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">February 27- "yesterday" is Feb 26. Does this scan make me look fat?</td></tr>
</tbody></table>
<div style="text-align: left;">
Feb. 26- Jacqui taps me an the shoulder in the chemo bay, my a$$ barely hit the chair- she's shuffling patients, my paperwork and what looks like possibly breakfast- Dr. K is already out the door halfway to the office. They are women on a mission. I HATE the scan results. I hate this. If I could move faster I would -just to get it over with. Jacqui handles shit- like a pro- when it hits the fan- for some reason it tends to hit the fan with me- she jumps in. She's on the exam table, Dr. K is pulling up the results. They are both dang near in tears. Oh Fuck. I knew this was bad. Soap will not wash my hands of this.</div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
I try to process the images. The November image is on the right, the current image on the left on the screen. My brain wants desperately to process this. But there's so few spots on the left- surely that's an older older scan, I must be wrong. I go by how I feel- I feel like HELL. Jacqui laughs and hugs me-<i>I think she's in shock. </i>They were expecting a grand reaction and I let them down. Dr. K nods knowingly<i>, she doesn't believe it</i>. I want to. I really do. I kinda wanna go wash my hands. I look to Phil and back. I am speechless. </div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
I am far from No Evidence of Disease, but this response is phenomfuckingtastic. We have issues- more so than emotional. We have to stablize the progress without killing the rest of me- which is a delicate balance( mind you covid was a blip on our radar at this point) and the delicate balance was crashing. My spleen is EWWWWge. Yeah- that's a bi product of mono as a kid and the glamorous chemo lifestyle I've become accustomed to. Not due to lack of handwashing. My liver is enlarged and showing signs of cirrhosis. Well hell- if I knew that was gonna be on the table I definitely would have had those few extra drinks. The shortness of breath- not fixed by the pleural drain- can partially be attributed to my organs fighting for real estate. So I was treated to a double whammy prescription of waterpills. For about 2 weeks- I literally went to the bathroom every 7 minutes. I timed it. I did not want to be caught mid flight o stair or sneeze at minute 6. 25 pounds of water weight - right down the toilet(see what I did there- that was a good thing- traditionally down the toilet is bad...) </div>
<div style="text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-a1h9-ezQ5Sk/Xo-njcUmX4I/AAAAAAAAHXc/Hm61sOxZpz4kgRwwEP7uP-yizllG_Pk_ACEwYBhgLKs0DAMBZVoBt0htgXaBOrN6D1L77sEZwjlob160BpKKC77VDIB196zKuQ5WBIL9Dsa9oJ5giFK_Ar2dhyvP3EvjpbTEPbahZW7VHuoceI82m5MAGDoHxZGXOG1_N4cfTvpHJSsZVjw6mh4rdjf7rhuC0uA_ahQFkHNLuhJfJIAbe_4rH2-Dmf37ozpfwDBENvzb_wD9k9kYcsYZaYpquswgT3nwNVywgW5tx09rRqU5-VJ4vw8Rx91P7Vdnc-oXg9FWxI7uMVePS1QjmZneaca8NbUTjvqFm-dt37haW7TOT_HqtsPAfmVPWPtNemEJverTAAcQWewLYvl2YSjEvgfrOIygdIVcN58tjRMuXZ7245CXQ9jePtXNEZN51jhpEXlRFM7qtifRk-kSMKplcLL88CLhBu3E24JKoDIRJ3zyTaELF9XdR4OmuTBIye0kOl-B-I_Cf3qs1TC4vCOx24BckW1QuzMLrOdxpLRlROQyYPR6ib6yFUEYsMv1moo_koc080mWUK6ObvpQ-CxmPAOSPl2gYgvmKWNszsrD_mSuW7Pkx-ip0XTnfdw2Y9F6qTR95IuIZvL3AmxTOALUmFRhJhx6qaMMX6hO9tDgD8_8wk9--9AU/s1600/myprecious.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1600" height="320" src="https://1.bp.blogspot.com/-a1h9-ezQ5Sk/Xo-njcUmX4I/AAAAAAAAHXc/Hm61sOxZpz4kgRwwEP7uP-yizllG_Pk_ACEwYBhgLKs0DAMBZVoBt0htgXaBOrN6D1L77sEZwjlob160BpKKC77VDIB196zKuQ5WBIL9Dsa9oJ5giFK_Ar2dhyvP3EvjpbTEPbahZW7VHuoceI82m5MAGDoHxZGXOG1_N4cfTvpHJSsZVjw6mh4rdjf7rhuC0uA_ahQFkHNLuhJfJIAbe_4rH2-Dmf37ozpfwDBENvzb_wD9k9kYcsYZaYpquswgT3nwNVywgW5tx09rRqU5-VJ4vw8Rx91P7Vdnc-oXg9FWxI7uMVePS1QjmZneaca8NbUTjvqFm-dt37haW7TOT_HqtsPAfmVPWPtNemEJverTAAcQWewLYvl2YSjEvgfrOIygdIVcN58tjRMuXZ7245CXQ9jePtXNEZN51jhpEXlRFM7qtifRk-kSMKplcLL88CLhBu3E24JKoDIRJ3zyTaELF9XdR4OmuTBIye0kOl-B-I_Cf3qs1TC4vCOx24BckW1QuzMLrOdxpLRlROQyYPR6ib6yFUEYsMv1moo_koc080mWUK6ObvpQ-CxmPAOSPl2gYgvmKWNszsrD_mSuW7Pkx-ip0XTnfdw2Y9F6qTR95IuIZvL3AmxTOALUmFRhJhx6qaMMX6hO9tDgD8_8wk9--9AU/s320/myprecious.JPG" width="320" /></a></div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
<span style="color: #073763;">DON'T HOARD SHIT. IT'S JUST NOT COOL. IF YOU TAKE ONLY WHAT YOU NEED OTHERS WON'T FRICKING DECIDE FOR YOU WHAT YOU NEED.</span></div>
<div style="text-align: left;">
We heard Corona was to be called COVID-19- annoying but understandable kinda like in mutnt land- p53 is the protein, TP53 is the gene. I was already vectoring how to get Kiera home from Denver- because mommy mode means I want to gather my family close. I'm considering taking the girls out of the public petri dish. No amount of handwashing can get that off. Phil tells me to hang in there. I was overreacting. I order toilet paper and make Kiera a care package of hand sanitizers, electronics, wipes, masks, gloves, and amazon the other nonshippables. Phil thinks I have completely gollumed.</div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
Phil's experiences with impending disaster to the island revolves around jet ops. He watches me prepare with a mix of mysticism and ridicule. It's an ISLAND people! Yet I am so discouraged by the hoarding. I know so many big families, families with medical needs who could/can not get essentials. Commodities are TOILET PAPER? I can see it when you are peeing every 7 effing minutes, yet we did not hoard and I told the kids to use paper products like they cared about the environment -now go wash your hands. The rate slowed, but still. I ordered wet bags and baby washcloths. After our trip to Europe, Phil installed a bidet upstairs- during chemo it's been a godsend. TMI- learn from the cancer people and the Europeans- HEEEWWWWWGGG takeways during this time. There are many ways to wipe- my cancer, military, nature friends know this. And when countries are dying from a virus- act people. Don't wait for it to reach your shores- because newsflash, it is already THERE. You can still make a difference.</div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
<span style="color: #073763;">ACCEPT THE GOOD LUCK, </span><span style="color: blue;">ROLL</span><span style="color: #073763;"> WITH THE BAD.</span> </div>
<div style="text-align: left;">
I had no energy to clean or fight the kids to do it. Fortunately, I have help. Phil is an amazing leader, despite all the forces that be conspiring AGAINST allowing him to do what he's decided is best for his people. (I never said that) He has the balance of academy training, Guard time and living with the genetic fallout of what is my cess pool of heredity. He's also rational while I'm hopped up on anti-anxiety and pain meds. Hand washing. Our PACK families brought us meals and kept Lily healthy during rehearsals and performances. My Monica came and after quarantining herself for 2 weeks- is here making sure we eat, clean and don't die. The kids call her momica. That's why I see luck. I am extraordinarily lucky in love and friendship. If you are reading this- YOU are one a coveted member of this elite yet notorious group. Thank you.</div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
<span style="color: #073763;">HELP IS A TWO WAY STREET. LOOK BEFORE YOU CROSS. </span></div>
<div style="text-align: left;">
I had self isolated for months. The trick is isolating together. All these years of us being oddly not pro social are paying off. I get texts to see what we need- usually from friends whose needs way surpass ours and aren't getting met. My friend Angel stops by with med supplies and reminds me she has a respirator if shit gets real. She's spent almost 2 decades of living despite phenomenal medical hardships with her daughters. Friends from all around the world rally with cards and gifts for Kiera whose spending her first birthday away from home quarantined(WHY she is not home is another story...) after I suffered a near mommy meltdown- all I had to do was ask. Another friend gloriously ships me 3 masks, with a note: Finally something I can do to help. Wash hands. The coveted kind- immediately pushing aside any desire to sell them on the black market to pay for college. I would never- it's why I am unlucky in business. I'd give them away in a heartbeat. Monica and Phil ensure I won't and that I wear it to clinic. But how can I in good conscience wear this fancy mask when my staff and Phil's group and so many simply do NOT have the protection they need? And my mom reminds me: <i>Please keep safe for you and your family. You are needed. </i>You are too.</div>
<div style="text-align: left;">
<br /></div>
<div style="text-align: left;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-02wcpYPtAKA/Xo-jch_xdEI/AAAAAAAAHW0/Hd4n-2eeZA8QlY_zpzwNPVNDvsmx4jg_ACLcBGAsYHQ/s1600/Screen%2BShot%2B2020-04-09%2Bat%2B12.35.48%2BPM.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1138" data-original-width="962" height="320" src="https://1.bp.blogspot.com/-02wcpYPtAKA/Xo-jch_xdEI/AAAAAAAAHW0/Hd4n-2eeZA8QlY_zpzwNPVNDvsmx4jg_ACLcBGAsYHQ/s320/Screen%2BShot%2B2020-04-09%2Bat%2B12.35.48%2BPM.png" width="270" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: left;">
<span style="color: #073763;">PRETTY MUCH ALL OF YOUR SYMPTOMS CAN BE ATTRIBUTED TO COVID-19 OR CANCER. IT'S PROBABLY A COLD BUT GET THAT SHIT CHECKED OUT. AND WEAR THE EFFING MASK- THERE ARE PEOPLE DYING FOR YOUR RIGHT NOT TO. </span></div>
<div class="separator" style="clear: both; text-align: left;">
<span style="color: #073763;"><br /></span></div>
<div class="separator" style="clear: both; text-align: left;">
Ok. the mask will not save you. it's only good for 15 minutes. If it gets wet- it's done. Reuseable masks have to be worn and cleaned properly. This is a new concept for the self centered- the mask is actually to protect those around you. Handwashing. Is a surgeon worried about getting a taste of the intestine he just unearthed? They sure don't want to- but the mask is partially to prevent them from drooling into the cavity- or sneezing... Do women wear feminine hygiene products because we don't want blood all over? Hell that ship sailed during first menstruation- it's a social convention to not bleed all over and well- hygiene matters. Wash your hands. Sing while doing it. or not. Wear the mask in public. Be a good Heeeeewwwwman. </div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-w8fd91L6qLI/Xo-_fg6jCaI/AAAAAAAAHXo/ShK5t4rscmwL-BAwqyupHPTjZTHzm_XtQCLcBGAsYHQ/s1600/flip%2Breversepublic.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1191" data-original-width="1079" height="320" src="https://1.bp.blogspot.com/-w8fd91L6qLI/Xo-_fg6jCaI/AAAAAAAAHXo/ShK5t4rscmwL-BAwqyupHPTjZTHzm_XtQCLcBGAsYHQ/s320/flip%2Breversepublic.JPG" width="289" /></a></div>
<div class="" style="clear: both; text-align: left;">
Me: I am still weekly to clinic for treatment until things get so bad it's "too much" of a risk. I hate statistics and effing risk v benefit is part of the 5w's. I'm down 35 pounds and wear leggings in public. Trick comment there- I don't GO in public- except to clinic- so there. I'm not on oxygen. I feel ok. It depends on the day. I love reconnecting with friends online- that is the biggest ray of sunshine in this pandemic. Weaned round the clock pain meds and finding the balance of comfort energy and stress. We are about 2-3 weeks behind the mainland surge- which puts our surge starting soon. I am slated to get my pleural drain out tomorrow(Friday) before I think he goes to the front lines. If I wasn't married to my soulmate, love of my life- McBreathey would have a TRO against me- I'm old enough to be one of his older sister's friends. mwahahaha. Kidding- I know my place- right behind the basin- scrubbing my hands while singing any song I want. May the luck be with us all.</div>
<div style="text-align: left;">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-8dIsBQCNXKE/Xo-_f7qZC1I/AAAAAAAAHXs/-5QhOGOh_ZUhPulxFydYNW7JWDsuSXrBwCLcBGAsYHQ/s1600/f%2Bcovid.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1600" height="320" src="https://1.bp.blogspot.com/-8dIsBQCNXKE/Xo-_f7qZC1I/AAAAAAAAHXs/-5QhOGOh_ZUhPulxFydYNW7JWDsuSXrBwCLcBGAsYHQ/s320/f%2Bcovid.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">check out snarkycancer.com for all kinds of t's and snark. </td></tr>
</tbody></table>
<div style="text-align: left;">
<br /></div>
</div>
4monkeyshttp://www.blogger.com/profile/12770518256915325592noreply@blogger.com2tag:blogger.com,1999:blog-129030241525479145.post-57200234373136997012020-02-15T13:13:00.000-10:002020-02-15T13:13:27.365-10:00Mutiny Abound, Abscess Much?<div class="separator" style="clear: both; text-align: center;">
</div>
When you send your mutant sistahs a picture of swelling due to unknown origin- you know you will get a response. That response will be get yer arse to the ER ya stubborn git. I will pull the compromised immune system card, which unfortunately can be used to argue either side.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-93Nvx9NLfn0/XkhxBSQo7bI/AAAAAAAAG5A/KkFtRCn-mDMc9cGhckATNs2WTlyqFIpugCLcBGAsYHQ/s1600/RenderedImage.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://1.bp.blogspot.com/-93Nvx9NLfn0/XkhxBSQo7bI/AAAAAAAAG5A/KkFtRCn-mDMc9cGhckATNs2WTlyqFIpugCLcBGAsYHQ/s320/RenderedImage.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">The "chipcheek".</td></tr>
</tbody></table>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
You will be stubborn and point out all the reasons that you should NOT go to the ER- infection, viruses, jokes about a corona with a side of lyme disease. Then they will mutiny and call in the closest mutant visiting to physically take over. Especially since closest mutant is here on vacation and stopped by just to make us dinner. I will swear. They will swear. I will submit because I know it comes from a place of love and these things can turn ugly very fast, especially with a compromised immune system.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-nxm_xZ0AaOY/XkhwtcMEmkI/AAAAAAAAG48/Cgmx7RW-SlopK-VMcJ8Fx4Im11qYeTe6QCEwYBhgL/s1600/IMG_9149.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1600" height="320" src="https://1.bp.blogspot.com/-nxm_xZ0AaOY/XkhwtcMEmkI/AAAAAAAAG48/Cgmx7RW-SlopK-VMcJ8Fx4Im11qYeTe6QCEwYBhgL/s320/IMG_9149.JPG" width="320" /></a></div>
<br />
So you use your energy to get dressed with your shitty trishia socks and let your friends take you to Acute Care on a BEAUTIFUL Sunday afternoon to check on a swollen cheek that hurts like hell but is localized. We consult a professional who agrees that the infection does appear to in fact localized but some redness is starting and I was to head to the ER first thing if it got worse, if not into clinic first thing in the morning.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-gu7IwG5rWC0/Xkh5uZYytJI/AAAAAAAAG5c/MGkCshBJ6h4MfpgrQ7RE1q-Scl12mzGuQCEwYBhgL/s1600/IMG_9123.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://1.bp.blogspot.com/-gu7IwG5rWC0/Xkh5uZYytJI/AAAAAAAAG5c/MGkCshBJ6h4MfpgrQ7RE1q-Scl12mzGuQCEwYBhgL/s320/IMG_9123.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">For those who take special care, it makes a difference. </td></tr>
</tbody></table>
<br />
The night was long, the pain still local but the fluid started moving into the gum. Damn. damn damn. Phil sets the alarm- I tell him I'm fine at 3am, because at 3am- an ER visit would essentially just be waiting for clinic to open. We head into clinic and I get chased around with pain meds(thankfully) and a ticket to ENT. ENT has a very good doc who sees the painful lump, appreciates it and the long medical history that is mine. Another attending comes in to not so gently appreciate the lump- he declares if he was a betting man- there was tooth and root involvement and we could extract that and the abscess today. Its not the tooth. Its the cheek. A baby doc comes in and harshly pushes against the abscess. I cry. I generally don't but damn. "is it something I said?" WTF baby girl doc- you just sent pain from 7 to 10- it was something you DID. We get sent to oral surgery, for an oral surgeon to decide if ct, mri, or xray will tell "us" what we need to know. After a quick xray, we see there is no tooth involvement - just a nasty painful abscess. Back to ENT.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-a1djz_m6sZ0/XkhwtEX4ZYI/AAAAAAAAG40/j6jqgwFhq6I6hdsM_HvVlEpdIqnXhlHHQCEwYBhgL/s1600/IMG_9148.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1600" height="320" src="https://1.bp.blogspot.com/-a1djz_m6sZ0/XkhwtEX4ZYI/AAAAAAAAG40/j6jqgwFhq6I6hdsM_HvVlEpdIqnXhlHHQCEwYBhgL/s320/IMG_9148.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ewww.</td></tr>
</tbody></table>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
Betting doc is less present. I'm morphined up and just want it all to stop. Nice doc is very apologetic, abscess needs to be drained and a drain left in to prevent further build up. Yep, familiar with this concept. The procedure sucked, but was a necessary evil. In between clinics- I'd bop into onc for more pain meds. good pain meds. yet borderline not good enough. ouch. We make an appointment for follow up. Which causes more stress than it should- but with docs who cause pain unnecessarily- it is tough to be brave. I'd decided I'd give him a piece of my mine and in front of baby doc too. A stage IV cancer patient is not looking for a fix to anything other than the immediate problem, which is often pain. One of the things we learn soon and often in medical land- is advocating for the right treatment on multiple levels. It is time consuming and exhausting. on multiple levels. </div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-2kQr7b1jyHU/XkhxNaEwa2I/AAAAAAAAG5Q/fZyiu_T9i2oi8-borv04DiiOHtY6H_k2wCEwYBhgL/s1600/IMG_9122.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://1.bp.blogspot.com/-2kQr7b1jyHU/XkhxNaEwa2I/AAAAAAAAG5Q/fZyiu_T9i2oi8-borv04DiiOHtY6H_k2wCEwYBhgL/s320/IMG_9122.JPG" width="320" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
Be Brave from Snarky Cancer.</div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
As it turns out, I did not get to see not-nice docs, so instead I praised good doc effusively. Because it matters. I know there are times where they have to fight the fight too and the patient sometimes gets lost. And its tough with pain to turn the swollen cheek. Yet it needs to be done. And then I delivered special shirts to my special caretakers, even though breathing is a little tougher again after the stress and my ankles were swollen and I was a teensy bit emotional. And For that we say: CANCERING is NOT fun. Do NOT recommend. After a quick 21st Anniversary/Valentine's Date at SPa Tripler- we came home and rested. </div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-FLco0p9Z2gs/XkhxUDyEHnI/AAAAAAAAG5U/avjTQHDnJ7MdY30DFHTZcXLBWaUaznT1QCEwYBhgL/s1600/IMG_1234.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://1.bp.blogspot.com/-FLco0p9Z2gs/XkhxUDyEHnI/AAAAAAAAG5U/avjTQHDnJ7MdY30DFHTZcXLBWaUaznT1QCEwYBhgL/s320/IMG_1234.JPG" width="320" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<br />4monkeyshttp://www.blogger.com/profile/12770518256915325592noreply@blogger.com0tag:blogger.com,1999:blog-129030241525479145.post-57113124928306275492020-01-27T17:30:00.002-10:002020-01-27T17:30:29.627-10:00Life Hits the Brakes, then Flies Right Past You. Before the holidays, I got the news that my friend Linda passed to the great fairy dance in the heavens. She was one of my early LFS friends, she often cheered me up with unexpected gifts and words of wisdom. Many times they were not words I wanted to hear, but needed to. And that's why we were friends. At about this point in my very first try with chemo, we did Jen's Island tour in a day, modified for her likes. She mentioned my cough was so much better and she was hopeful for me. In 2018, I got to sit and chat with her in her gorgeous home and she confided she didn't have long. It was my turn to tell her something she didn't want to hear, I could tell she felt awful- but she had more time than she thought. She was too damn stubborn to go yet. And she was. I have a message from her that sits in my voicemail a couple weeks before she died. I wanted to call her back but didn't want to say goodbye. I was in the middle of shit and couldn't feign positive and I knew she needed every glimmer of hope then. Due to my schedule and condition, it's not safe for me to fly, I knew there would be no way to attend her celebration of life.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/--sPIXko1UrY/Xi-lVV1W6LI/AAAAAAAAGmE/kFdkCiCd0NILRFOsMkM6mHvPX1kqmpT8ACEwYBhgL/s1600/IMG_1494.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="150" src="https://1.bp.blogspot.com/--sPIXko1UrY/Xi-lVV1W6LI/AAAAAAAAGmE/kFdkCiCd0NILRFOsMkM6mHvPX1kqmpT8ACEwYBhgL/s200/IMG_1494.JPG" width="200" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-ahrfMgdhSKE/Xi-lqM9ehtI/AAAAAAAAGlw/b21CdyyMJfc5-nqpyNibX5UpJPisX06WwCEwYBhgL/s1600/IMG_1F22FE8B7A48-1.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="960" height="240" src="https://1.bp.blogspot.com/-ahrfMgdhSKE/Xi-lqM9ehtI/AAAAAAAAGlw/b21CdyyMJfc5-nqpyNibX5UpJPisX06WwCEwYBhgL/s320/IMG_1F22FE8B7A48-1.jpeg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/--RBXQaodDZk/Xi-l0GRs3SI/AAAAAAAAGmI/7_L6Oz2TvjgsCY1GKuH2BTKTGqEkW2FqACEwYBhgL/s1600/phone%2Bnov%2B13%2B011.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://1.bp.blogspot.com/--RBXQaodDZk/Xi-l0GRs3SI/AAAAAAAAGmI/7_L6Oz2TvjgsCY1GKuH2BTKTGqEkW2FqACEwYBhgL/s200/phone%2Bnov%2B13%2B011.jpg" width="150" /></a></div>
<br />
A week ago, we got the news that one of Phil's Academy classmates and fellow pilot suddenly passed away. I only knew Fangs from reputation and stories, knew he was very highly regarded in our community and that he left behind a wife and 2 children. I did not have the honor of getting to know them, but know many of my very respected friends are friends in common. My heart broke. He didn't choose to go. For his family and friends, that will forever be a moment that life changed. His death weighs heavily on Phil, because he has my gollum of a meme in his face daily reminding him how soon that moment could be his.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-bYrLK8IB7qY/Xi-lib_vgVI/AAAAAAAAGl0/f_Kj7nB1mtEi9cdMCeb0tTVWbg35t6BwACEwYBhgL/s1600/IMG_8991.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://1.bp.blogspot.com/-bYrLK8IB7qY/Xi-lib_vgVI/AAAAAAAAGl0/f_Kj7nB1mtEi9cdMCeb0tTVWbg35t6BwACEwYBhgL/s320/IMG_8991.JPG" width="240" /></a></div>
<br />
He was distracted. Sad. I knew he needed to go to Fangs' memorial. He didn't want to leave me. Life Triage. In true Mallory luck, Phil would leave the day before my SIL did. I'd go from reinforcements to my first solo on the new chemo routine, which none of us has down and skip a pleural draining. The memorial was in Colorado Springs, another reason to go. Then I told him he needed to go. For him, for his friend, to be with his friends during this time, to get away from this and to hug Kiera, for me.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-wkmADbUuySA/Xi-ljecbWeI/AAAAAAAAGmE/LmDHrvhJ9YUpsoZT6DkW6XqDpJTuHG6JgCEwYBhgL/s1600/IMG_9010.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1067" data-original-width="1600" height="213" src="https://1.bp.blogspot.com/-wkmADbUuySA/Xi-ljecbWeI/AAAAAAAAGmE/LmDHrvhJ9YUpsoZT6DkW6XqDpJTuHG6JgCEwYBhgL/s320/IMG_9010.JPG" width="320" /></a></div>
<br />
Before Theresa got here- I started testing my boundaries without oxygen. One day I texted Phil that I excitedly made it UP the stairs, slowly and with 3 breaths per stair but made it without desatting. I spend a little time outside for sun and do a few laps in the back yard. My pleural fluid is decreasing and McBreathey gave us the ok to drain every 3 days instead of every other. There is a lot less fluid and it's a more normalish pee yellow than the scary amber. My belly still swells creating some discomfort, but if I can keep the whole system doing ok, we are making progress. My goal at the end of this week is to take Dobby for a walk to the corner and attend one of my favorite lil friend's birthday party.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-Y3KkKv2Bajg/Xi-mv9j1YJI/AAAAAAAAGmc/5z9jqwDjKZ4jxkSUTk_XEu1AEpGL99FRQCLcBGAsYHQ/s1600/IMG_8946.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://1.bp.blogspot.com/-Y3KkKv2Bajg/Xi-mv9j1YJI/AAAAAAAAGmc/5z9jqwDjKZ4jxkSUTk_XEu1AEpGL99FRQCLcBGAsYHQ/s320/IMG_8946.JPG" width="240" /></a></div>
<br />
The day before my last chemo, I knew I was going to be feeling about as good as it would get for at least a week. I asked Theresa if she'd be down for grabbing a fancy coffee at Ko'olina and letting me do a light shopping mission for my nephews. She was showered and back downstairs in a flash. Faster than I could get up and down the stairs. As we backed out of the garage, she mentioned the van was not handling right and in true pilot fashion- insisted on a walk around that revealed a flat tire. Oh Life. These times I try to think of karma and balance and just hope that since I had reinforcements and help, in the grand scheme- we were saving universal murphian energy from plaguing at least another poor soul. Maybe in that moment something was going right in a hard time for someone. I also thank these moments when they fall towards, us. We have experienced many of both.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-CCZLaakom9A/Xi-li0xtEaI/AAAAAAAAGl8/rgS1xlvYf60ud9Ri2fC0ULjkfqYJUDzcwCEwYBhgL/s1600/IMG_8971.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://1.bp.blogspot.com/-CCZLaakom9A/Xi-li0xtEaI/AAAAAAAAGl8/rgS1xlvYf60ud9Ri2fC0ULjkfqYJUDzcwCEwYBhgL/s320/IMG_8971.JPG" width="240" /></a></div>
<br />
Theresa and Phillip replaced the tire with the spare, also flat, fortunately AAA was happy to help. I went and slept the rest of the day while my blessings were fixing the tire so we could get up at the crack of dawn to rinse and repeat. Last week I was surprised by getting just about all the meds. I thought that would be the following week. The protocol screenshot in my phone, includes weeks not dates - that's the first problem there. So I expected just the chemo and new Avastin for this following trip and luckily still had Theresa there. I got the bonus of of 2 bags of packed red cells since all my counts were low. This leaves me vulnerable to infection(no flying petri dish tin cans for me- god forbid partaking in a little Corona-V with a side of Lyme). I had forgotton how long transfusions take. I am supremely grateful to all who have good blood and take the time to donate- it makes days like that infinitely easier when there is blood available. Murphy. Karma. Universe. Nod.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-R2knmbk3VBk/Xi-liiHWyfI/AAAAAAAAGl4/qVUGQjo-edE3kKmZPTWPGd9vEdIT9cvTACEwYBhgL/s1600/IMG_8983.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://1.bp.blogspot.com/-R2knmbk3VBk/Xi-liiHWyfI/AAAAAAAAGl4/qVUGQjo-edE3kKmZPTWPGd9vEdIT9cvTACEwYBhgL/s320/IMG_8983.JPG" width="240" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
The new med Avastin does a couple fun things- it takes my voice for a few days and makes my nose bleed. Friday I alternated between shoving tissues up my nostrils and just leaning over the sink and letting it drip. Ironically the same rate as the drip drip of the infusion merely days before. Fuck. I called my nurse declaring I was NOT coming in, just needed the trick to slow it. Ice compresses. they work. I have a couple eye mask ones that work well. The biggest problem is that I can't breathe with the clots and blow my nose, or it knocks loose the clot and the process starts over. I also learned when I finally got the bleeding to stop- that the runny nose from the monoclonal antibodies also flushes out the clots in a fun process. Also fun is the neuropathy, shakes, exhaustion and chemo incontinence with Abraxane. SO despite not having female plumbing- I still have a full complement of female products to address multiple orifaces' leakage. The best is when I can order online and make the 20 year old man- child pick up everything from sensitive skin cleansers, lotions(my skin hurts) incontinence pads, to super small(nostril fitting tampons) with the hemorrhoidal wipes to try and prevent chemo baboon butt.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-WTN5cMIwOfs/Xi-qdJuP-0I/AAAAAAAAGm4/Ciz6F9OZznwo1mUXsnyDe7I6Q66VgkSgwCEwYBhgL/s1600/IMG_8984.MOV" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="240" data-original-width="320" src="https://1.bp.blogspot.com/-WTN5cMIwOfs/Xi-qdJuP-0I/AAAAAAAAGm4/Ciz6F9OZznwo1mUXsnyDe7I6Q66VgkSgwCEwYBhgL/s1600/IMG_8984.MOV" /></a></div>
<br />
This week is an "off week". No chemo. Just my ECHO to check on my heart. It's working, a little overtime. My heart rate is climbing and I needed an iv contrast to help them get better images. Phil got in at 11pm last night and we drove quietly to Tripler at 6am. We were both dragging. He hasn't decompressed from his trip, I haven't recovered from my solo(3- flipping days- I remember when I could get an entire room redone in that time. ) I slept though most of the Echo. and apparently kept moving back and the darn pleural drain dressing is right over the sweet spot for a key image but she was great and gently got it.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-5PQ3b4omla4/Xi-ljFlqV_I/AAAAAAAAGmA/mH-iAN7zXzQG-FEKiigemZTpQhKNqWxXQCEwYBhgL/s1600/IMG_8999.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="960" data-original-width="1280" height="240" src="https://1.bp.blogspot.com/-5PQ3b4omla4/Xi-ljFlqV_I/AAAAAAAAGmA/mH-iAN7zXzQG-FEKiigemZTpQhKNqWxXQCEwYBhgL/s320/IMG_8999.JPG" width="320" /></a></div>
<br />
Kiera texted yesterday that Kobe died. Then to find out it was a helicopter crash- there were multiple deaths, parents and children. Families whose entire universe crashed down in that moment. Of course most will mourn Kobe- he was very well known and loved. It is tragic. I mourn all, the children, the families, lost and left behind to make sense of life as it will continue to fly by them in the format of awards show, sports games, everything. It is easy to mourn when loss is always so fresh. It is cumulative. Each one harder than the next. Memorials help fill the cracks of our hearts. Surrounding us with those who have many cracks of their own.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-lSJWoxp43wg/Xi-npyZG0aI/AAAAAAAAGms/Q9n9PE3375M15_me-qrrHgVJehuLcLuRgCLcBGAsYHQ/s1600/IMG_9951.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1280" data-original-width="588" height="320" src="https://1.bp.blogspot.com/-lSJWoxp43wg/Xi-npyZG0aI/AAAAAAAAGms/Q9n9PE3375M15_me-qrrHgVJehuLcLuRgCLcBGAsYHQ/s320/IMG_9951.JPG" width="147" /></a></div>
Phil finally will barely broach the subject of what I want as a memorial. It's a very difficult for him, I hate that he is gathering memorials of experience for reference. After all, when the mutants were here - they sat with pen and pad- asking the tough questions. I wasn't ready then- although the subject has morphed in my mind multiple times over the years. We laughed as we discussed songs, perhaps irreverant ones that could accidentally play and either shock or envelope in laughter.<br />
<br />
For the record- I want no one to go to great expense or hardship. PERIOD. Perhaps favors will be all the feminine products and gumball machines of crazy meds I've acquired. Honor me through my family. Through acts of happiness and giving. Share love, hugs, stories and thoughts regularly. To my dedicated ones- text them as often as you text me. They won't always respond either, but it matters. Adopt A LFS Family, they always need help but won't ask. Make the world better. That's all. For now I'm thinking of snarky ways to torture those who do show up for a celebration of life(Trish- shall I pre-order tshirts now- I think it's a bit soon).....I have a fair amount of time to do this so it should be good. Mills- your services will be needed. Payment will be in shave ice and garlic shrimp and you will be first weapon of torture. DeAnn will rein it all in to keep it "respectable". The good thing about stopping and looking around are the moments that Don't pass me by.<br />
<br />
<br />4monkeyshttp://www.blogger.com/profile/12770518256915325592noreply@blogger.com0tag:blogger.com,1999:blog-129030241525479145.post-40548082580004624362020-01-09T10:41:00.000-10:002020-01-09T10:41:03.872-10:00A Force to be Reckoned With- A New CycleLike almost everyone else on earth and possibly lands far, far away, We love Baby Yoda. What started as a free Disney + trial, became a family obsession. It began with the girls actually watching the Mandalorian, waiting not so patiently Thursday until 8pm, hoping the time difference would work to our advantage and Friday's episode would pop up, offering sagey cuteness to the soundtrack of Mallory awwwwws.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-GPlBLNYrf6s/Xhd7muL5coI/AAAAAAAAGiU/yB6NvLAQ7UISfmJsCs4cxZFXJ9qEKASzgCEwYBhgL/s1600/IMG_8875.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="520" data-original-width="1116" height="149" src="https://1.bp.blogspot.com/-GPlBLNYrf6s/Xhd7muL5coI/AAAAAAAAGiU/yB6NvLAQ7UISfmJsCs4cxZFXJ9qEKASzgCEwYBhgL/s320/IMG_8875.jpg" width="320" /></a></div>
<br />
<br />
Phil's birthday generally gets lost in the bustle, immediately following Thanksgiving. He also uses my Amazon account- so surprise gifts are not really practical, especially when my medical condition is less than optimal. I usually use the force of persuasion to get him to take the kids or the guys to a football game.<br />
<br />
After months of him griping about a need for a power washer, I caught a flash sale on amazon. It was this bright green power washer- and I checked- this is a gift- hoping it would mayyyybe be delivered in a box that did not display bright green power washer- no such luck. So when Phil answers the door- the UPS guy hands him the box o brightly green power washing capability, I shrug and grin- Happy Birthday?<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
A few days later, he and the kids head to a football game. It's the last day of November. By the time they get home- it will be his birthday. I glance at the hideous green power washer and it hits me. Not literally, it wasn't plugged in. Baby Yoda. I grab 3 pieces of green paper and Dobby's blanket off the couch- I've always been a fan of creative wrapping.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-wDA_dheVOJ8/Xhd7lhW3ghI/AAAAAAAAGiY/j8EUiDhsZwIkcarncG59uWGN0Bs5yZtwgCEwYBhgL/s1600/IMG_8211.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://1.bp.blogspot.com/-wDA_dheVOJ8/Xhd7lhW3ghI/AAAAAAAAGiY/j8EUiDhsZwIkcarncG59uWGN0Bs5yZtwgCEwYBhgL/s320/IMG_8211.jpg" width="240" /></a></div>
<br />
December, a barrage of holiday readiness, appointments and baby yoda memes, tik toks and whatnot. Phil, he who was opposed to our acquisition of small furry beast, now has a partner to grill with. Yoda was on our original list of names for Dobby. But Jedi he is not. House elf he is. Size matters not.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-QpcSwSc3ges/Xhd7lU-AG8I/AAAAAAAAGig/tuBhZERcRZA1R4euTjjYT6bf8cJmNAhFACEwYBhgL/s1600/IMG_8297.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://1.bp.blogspot.com/-QpcSwSc3ges/Xhd7lU-AG8I/AAAAAAAAGig/tuBhZERcRZA1R4euTjjYT6bf8cJmNAhFACEwYBhgL/s320/IMG_8297.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">House elf and the child.</td></tr>
</tbody></table>
Keeping busy helped through the rough spots of my first cycle. We slowly are finding our way back into an old routine with new tweaks. It's not familiar enough yet for me to predict, but enough to recognize and remember. There are days I want to lay curled up in a ball and sleep it away and the days where I am pretty positive I can do this. Memory is a tool, I use energy to collect supplies for comfort and prepping to make the rough bits easier become a routine.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-6ZX3cW5cxAw/Xhd7liVhGAI/AAAAAAAAGio/AyVX38dHJU8uH7FE9uTD0tevnswkF9_fQCEwYBhgL/s1600/IMG_8287.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://1.bp.blogspot.com/-6ZX3cW5cxAw/Xhd7liVhGAI/AAAAAAAAGio/AyVX38dHJU8uH7FE9uTD0tevnswkF9_fQCEwYBhgL/s320/IMG_8287.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">days like this some are</td></tr>
</tbody></table>
<br />
I find a backpack for Vader- my oxygen consumption is down so his battery lasts longer. It means I am unleashed. I shake off some of the anxiety and announce that I am the next Mandalorian. The kids scoff my proclamation. I hope they never know the relief this small backpack affords me.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-NvahWV6s4t4/Xhd7l8DIS0I/AAAAAAAAGic/H3njdnO45oYqOPmZBGdCcQYVZXN86urNQCEwYBhgL/s1600/IMG_8870.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1600" height="320" src="https://1.bp.blogspot.com/-NvahWV6s4t4/Xhd7l8DIS0I/AAAAAAAAGic/H3njdnO45oYqOPmZBGdCcQYVZXN86urNQCEwYBhgL/s320/IMG_8870.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">backpack, baby yoda, 3D baby Yoda</td></tr>
</tbody></table>
<br />
Lily traces Mandalorian and spends an entire day expertly shading it. They are right. Mandalorian I am not. Armor I am missing. My guard is down. I am working on that. It's time to flip the narrative, I've felt like there was a bounty out on me- but now I'm putting that back on the cancer.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-Fba7yc82NcU/XheAFU-Je2I/AAAAAAAAGiw/cWMWUWLOysIc-iHcdVhZQzkBoiSbReMbgCLcBGAsYHQ/s1600/IMG_8871.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="960" data-original-width="1280" height="240" src="https://1.bp.blogspot.com/-Fba7yc82NcU/XheAFU-Je2I/AAAAAAAAGiw/cWMWUWLOysIc-iHcdVhZQzkBoiSbReMbgCLcBGAsYHQ/s320/IMG_8871.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Bounty Hunter</td></tr>
</tbody></table>
<br />My new protocol approaches the cancers from multiple angles. Just as the lil bastard cells multiplied, so must our response. Initially, I spent a lot of effort reducing collateral damage, and while that is still important- there is some slashing and burning that needs to be done. That bomb is abraxane. It goes in and stops cells from dividing. Since cancer cells are like weeds, the idea is that the chemo will kill off the cancer cells faster than it kills off the good cells and the good cells' host. <table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-jH-H3RRcZkw/XheF4u0blGI/AAAAAAAAGjI/60wEgvsh-nMqIQZNb_j9JpLG_udDZEpsQCEwYBhgL/s1600/IMG_8513.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://1.bp.blogspot.com/-jH-H3RRcZkw/XheF4u0blGI/AAAAAAAAGjI/60wEgvsh-nMqIQZNb_j9JpLG_udDZEpsQCEwYBhgL/s320/IMG_8513.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Tiny expensive bag o cell killin abraxane.</td></tr>
</tbody></table>
<div>
<br /></div>
<div>
We also are adding a new med call Avastin. Avastin is a monoclonal antibody and is a targeted therapy. When we get sick, our body makes antibodies to mark and get rid of the bad cells, monoclonal antibodies use this premise. There are many different monoclonal antibodies, just like there are many different antibodies for colds and viruses. Cancer cells like a big juicy blood supply and develop a lot of blood vessels- Avastin is one therapy that inhibits the growth of vessels, hence taking away the life source before it takes away mine. As you can imagine, by nature of how these treatment work, there are side effects. The abraxane side effects I am familiar with. Hair loss, GI issues, neuropathy, feeling cold(in hawaii, allllll the time) shakiness, general malaise. When you put meds together, they sometimes help each other work better. I've learned for me, side effects are an indicator that the treatment is working. If that is true, treatment is ah wurkin.<br /><div class="separator" style="clear: both; text-align: center;">
</div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-Hd2FjUErfbE/XheF0RVlIJI/AAAAAAAAGjE/aA24qbivGXI3TUaePDoWL2x239tfFTMkQCEwYBhgL/s1600/IMG_8906.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://1.bp.blogspot.com/-Hd2FjUErfbE/XheF0RVlIJI/AAAAAAAAGjE/aA24qbivGXI3TUaePDoWL2x239tfFTMkQCEwYBhgL/s320/IMG_8906.jpg" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">funny how an antibody is less anti-body and more targeted...Avastin.</td></tr>
</tbody></table>
<br />It's just these two meds this week. Next week will be another combo. By the time I get home from infusions, I'm physically and emotionally drained. I feel bone tired. I look pretty pekid as my mom says. We were late to clinic because I was up in the middle of the night with aches- rain...so Phil let me sleep until 8:30 but our timeline of trying to get back by 2:30 to get Lil to her orthodontist appointment was already blown. Little things like that add to the stress and I am always grateful when I can text a friend for help and get a - we'll make sure she's taken care of. I know it's not convenient. It is absolutely appreciated. Plus I hang in clinic just a little longer to get a full bag of hydration since I struggled last cycle feeling dehydrated. Phil runs around Tripler collecting prescriptions, hearing aid batteries or any other tasks that add up. </div>
<div>
<br /></div>
<div>
SO the weather forecast did not call for rain until Friday. Local peeps, keep your umbrellas handy before then- the bones have spoken. My Gi tract feels like a Sarlacc having a seizure.<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-qXL8puMOICI/XheLgz6bZ_I/AAAAAAAAGjc/k0oZldtb8fgCouY8MYxXfMIv1dbZHZHTQCLcBGAsYHQ/s1600/Screen%2BShot%2B2020-01-09%2Bat%2B10.21.41%2BAM.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="734" data-original-width="1336" height="175" src="https://1.bp.blogspot.com/-qXL8puMOICI/XheLgz6bZ_I/AAAAAAAAGjc/k0oZldtb8fgCouY8MYxXfMIv1dbZHZHTQCLcBGAsYHQ/s320/Screen%2BShot%2B2020-01-09%2Bat%2B10.21.41%2BAM.png" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">chomp chomp chomp</td></tr>
</tbody></table>
<br />My breathing overall is better. I can sit for time without oxygen, giving my nose a much needed rest. Whether the nosebleeds are from the airflow or chemo or a combination- the rest helps. My neuropathy in my hands is not great. It seems kinda cruel that you can be numb and feel pain at the same time, but my arms are good and my kids fill them with hugs. My hair started clumping out after a couple weeks. The follicles get inflamed and so hair movement hurt- which meant shaving it was for comfort. So far my voice hasn't done the wonky thing. Phil changes my dressing and drains my pleural fluid every other day- we've spent the better part of the past month trying to figure out rashes and reactions. I have a full collection of tapes and wraps and the one that I swore wouldn't work has worked like a champ for the past 2 changes. I think my skin will get wonky again through the cycle, we will keep on top of it. </div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-Lr1HD7DA5b0/XheF0Knvi0I/AAAAAAAAGjM/9G0EpfvRXmgIBoWaiIywRsxkWfBB7cFbgCEwYBhgL/s1600/IMG_8905.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://1.bp.blogspot.com/-Lr1HD7DA5b0/XheF0Knvi0I/AAAAAAAAGjM/9G0EpfvRXmgIBoWaiIywRsxkWfBB7cFbgCEwYBhgL/s320/IMG_8905.jpg" width="320" /></a></div>
<div>
<br /></div>
<div>
I don't go out much. Phil takes me for drives to look at the ocean- I open windows or sit out back for fresh air, because it seems like everyone is coughing and hacking. I'm looking at it as a short term isolation to help my lungs heal. Now the kids are back at school, germs will come home. We just do the best we can. Like everyone else. I am not a force to be reckoned with, I'm just a person trying to find my next piece of armor. Perhaps it will be made of gold. </div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-xI9rMx-M_C8/XheF0BdEe2I/AAAAAAAAGjU/qjTtRkzIwLkI2dbBDQcvK8UaxBjQiVvkQCEwYBhgL/s1600/IMG_8904.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://1.bp.blogspot.com/-xI9rMx-M_C8/XheF0BdEe2I/AAAAAAAAGjU/qjTtRkzIwLkI2dbBDQcvK8UaxBjQiVvkQCEwYBhgL/s320/IMG_8904.jpg" width="320" /></a></div>
<div>
<br /><br /><br /></div>
4monkeyshttp://www.blogger.com/profile/12770518256915325592noreply@blogger.com0tag:blogger.com,1999:blog-129030241525479145.post-20914492277355169872019-12-30T16:16:00.001-10:002019-12-30T16:16:19.787-10:00Losing My VoicePhil constantly asked if I tested how far the oxygen tubing would go. I didn't. He's an adventurer(hence his gamble on me) and I play it safe. I research, then think, then ponder, rationalize, then research then maybe decide or wait for a sign. I was so happy to have the oxygen, my life raft with a tether. Yep- that's a summary of something- surrounded by a world of oxygen and need the stuff in a tube. I'm fancy like that.<br />
<br />
I would get the tube of vader caught everywhere, hated taking him in the bathroom, would wipe down tube, double check my pulse ox and his battery obsessively. I was afraid to go out- his battery not lasting more than an hour. Despite the fact that I could barely last more than an hour- we predetermined power sources and had a power cord in the car.<br />
<br />
After a couple oxygen related anxiety attacks, one morning, Kiera and I tested how far Johnny 5's tubey could go. she rapelled it over the railing -and fed me bits as I safely walked from the back door to the front door, in and out of the bathroom, over by my desk. I now could move around the house without worrying about battery.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-yNtPPOO6MiU/Xgqu1l6DsTI/AAAAAAAAGZU/MplxyaAlE3onxBs2aemMeIzwmBkDeOlNwCLcBGAsYHQ/s1600/IMG_8470.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://1.bp.blogspot.com/-yNtPPOO6MiU/Xgqu1l6DsTI/AAAAAAAAGZU/MplxyaAlE3onxBs2aemMeIzwmBkDeOlNwCLcBGAsYHQ/s320/IMG_8470.JPG" width="240" /></a></div>
<br />
We still had plenty of appointments and Vader still causes stress. Which is silly, since he provides so much relief. I'm getting better at keeping him charged, stopping before I get stressed and we are working on getting back up batteries.<br />
<br />
After several appointments, pleural drainings and time, I ran into my Onc by the entrance to the hospital. She had been on leave, and come to find out she was at a breast cancer conference and had some ideas. I was really struggling and tired and felt like I was gettin a little worse each day. I just looked at her and said- we have to DO something. No more waiting. I needed to breathe and then we deal with the other sharks.<br />
<br />
When this started, I was very much in charge of treatment. I fired my first oncologist who was very by the book- plug shit in the computer and see what the biggest percentage for success was. I was a mull every option- figure out what the best option for ME was. More than one doc had to be educated on how to "work with" me on treatment, otherwise I cut bait. That was over 6 years ago- several treatments ago, a few progressions ago. I have different experiences now, my body has been through a lot. Most of all I am tired and I know the road is not over yet. But I need help.<br />
<br />
The next time I went in to clinic- the plan had been made, but no one had talked to me about it. I was torn between grateful for options and what the actual fuck? I needed to look up meds, I needed to understand why. Was LFS taken into consideration, because we were already behind. I accepted one of the meds and said no to the other until I could do research. My new plan means weekly visits- so we made an appointment for the following week and I was armed with a plan to research. We were also waiting on genetic tests to come back- I was tired of waiting. 6 years ago- I would wait. I could breathe 6 years ago.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-wsbRbPmi7Dc/XgqtlB2ZUGI/AAAAAAAAGZA/q9pasc3m5JQUxduc3bbc_mfzO93Kogx6ACEwYBhgL/s1600/IMG_8515.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://1.bp.blogspot.com/-wsbRbPmi7Dc/XgqtlB2ZUGI/AAAAAAAAGZA/q9pasc3m5JQUxduc3bbc_mfzO93Kogx6ACEwYBhgL/s320/IMG_8515.JPG" width="240" /></a></div>
<br />
We are continuing the Herceptin and Faslodex which address hormone aspects of my cancers. I continue the denosumab which addresses keeping my bones strong- since I have new bone metastases- we have to be very careful of fractures. The specialists were split on the mix of what was arthritis and what was cancer, but there are definitely both in my knees and hips. The new chemo is an old chemo for me Abraxane. It worked on lung mets before and it's the slash and burn. Fingers crossed it will work again. Then we added Avastin. This was the one I was unsure about. It had a relatively low side effect profile- the main SE's being high blood pressure and fatigue. I worried about the blood pressure, although my team mentioned it was very treatable and they monitor closely for changes. I went home and went online to the support groups.<br />
<br />
I learned 10 years ago when I started searching online for help with Lily's treatment- that the side effects you learn about from real people are very different from the ones that are reported. How they are treated is also different. I learned a few things. Most people online had suffered high blood pressure with Avastin- which makes sense, they went online to find help. Most people don't go looking for help when they don't need it. Another weird side effect many had was hoarseness. Some lost their voice completely, others said it was worse after infusion then got better. This was pretty ironic to me. Over time, cancer and treatment take a lot away from patients and their families. Now it was literally taking voices. wow.<br />
<br />
Avastin works by stopping the growth of blood vessels. Which cancer generally has an extra supply of. By adding this in- we are targeting many sides of the way cancer is trying to outsmart my immune system. It also makes sense why it would cause issues with blood pressure. So after discussing this and future options with my onc- I settled in for my first treatment.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-pS9pHF3qaR8/Xgqtlb1ZATI/AAAAAAAAGYw/wItzV_o_JfknLg1LS6AEl6vvp7GZR7q5gCEwYBhgL/s1600/IMG_8513.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://1.bp.blogspot.com/-pS9pHF3qaR8/Xgqtlb1ZATI/AAAAAAAAGYw/wItzV_o_JfknLg1LS6AEl6vvp7GZR7q5gCEwYBhgL/s320/IMG_8513.JPG" width="240" /></a></div>
<br />
Even though I kinda knew what to expect, you just never know what SE you will get. So one day when I woke up and noticed my voice was just a creak I was mildly amused. Kind of like when you have laryngitis and it's a novel funny thing. I would be talking and mid sentence there would be no volume. I went back to the online groups to see if anyone found a solution and it all seemed to be pretty random- so I kinda figured not too shabby. I'm not a public speaker, the needing oxygen thing makes long conversations not practical or comfortable. It doesn't hurt, so that is a bonus.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-VGypZV9CR9U/XgqtlogAqjI/AAAAAAAAGZE/GP1DLOOzgc01kuxjD1MZqt_8r0FUzDAewCEwYBhgL/s1600/59916451782__30A037DB-2304-43D8-8CE4-6DE67AA58DE1.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://1.bp.blogspot.com/-VGypZV9CR9U/XgqtlogAqjI/AAAAAAAAGZE/GP1DLOOzgc01kuxjD1MZqt_8r0FUzDAewCEwYBhgL/s320/59916451782__30A037DB-2304-43D8-8CE4-6DE67AA58DE1.JPG" width="240" /></a></div>
<br />
I just finished my first cycle(one month). It will take the team to keep me on track as I have certain meds certain weeks, others other weeks for 3 weeks and then 1 week "off". This week is "off" and I am hopeful. The swelling in my legs and feet is down significantly, the fluid around my left lung is less uncomfortable- I can lay down! At first it was a tetris of pillows, and I learned that laying down hurts my hip- go figure. By decreasing the angle- I decreased the pressure on my hip and slept normally for a couple of hours the other night. My hair is falling out and Kiera requested the honor of cutting it- so we did that. She did a good job despite the challenge of a moving target. I would guess in the next couple weeks it will be gone. I am exhausted. The fatigue is no joke. Naps are a necessity and much approved by Dobby. It's tough- I'm hot, then cold, yes, then no but will take it over not breathing. I feel like we are back on track and am hopeful. And I've learned that losing my voice does not mean I won't be heard and having a voice doesn't mean you will be understood.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-lnuCiojx9Nw/Xgqtl_z9UuI/AAAAAAAAGZI/RpY2umtnZRQZ1ofl_VFAbruJk8MvWoINgCEwYBhgL/s1600/IMG_8661.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://1.bp.blogspot.com/-lnuCiojx9Nw/Xgqtl_z9UuI/AAAAAAAAGZI/RpY2umtnZRQZ1ofl_VFAbruJk8MvWoINgCEwYBhgL/s320/IMG_8661.JPG" width="240" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-C5hEniaJFUI/Xgqtmd5GHTI/AAAAAAAAGZM/wjeSEP1xanU_j6wOpdtMjl8qCfkP0BsbACEwYBhgL/s1600/IMG_8672.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://1.bp.blogspot.com/-C5hEniaJFUI/Xgqtmd5GHTI/AAAAAAAAGZM/wjeSEP1xanU_j6wOpdtMjl8qCfkP0BsbACEwYBhgL/s320/IMG_8672.JPG" width="320" /></a></div>
4monkeyshttp://www.blogger.com/profile/12770518256915325592noreply@blogger.com0tag:blogger.com,1999:blog-129030241525479145.post-14271754099141507192019-12-06T10:06:00.000-10:002019-12-06T10:06:01.950-10:00Thankfully Burdened and Drained. <table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-bbEUAdzQPU4/XeqyaJ8Z_uI/AAAAAAAAGKM/xuraAtYOIvk1UzQckM4AXz8ldVtSaJ9nACEwYBhgL/s1600/IMG_8187.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://1.bp.blogspot.com/-bbEUAdzQPU4/XeqyaJ8Z_uI/AAAAAAAAGKM/xuraAtYOIvk1UzQckM4AXz8ldVtSaJ9nACEwYBhgL/s320/IMG_8187.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Thankful. </td></tr>
</tbody></table>
<br />
We had a quiet yet very tasty Thanksgiving at home. Phil prepped and cooked everything. It was amazing and so good. I still felt a bit exhausted from appointments the days before. We are kinda in the revolving door phase of appointments- often going in for one, being sent to another and never knowing what fun might be in store. The drain placement was very much planned and I have to admit- I was really really anxious. It was necessary, since we were revolving into pulmonology too often to help my breathing via way of large needle poked into pleural cavity(the spot between lungs and ribs).<br />
<br />
Phil and I argue over how many times I've been drained, technical term thoracentesis. Thoracenteses?<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-LZqr9LbGxAY/XeqyZ7H2-VI/AAAAAAAAGKE/2TaZSjWInugotYW4eKXVPUQ-yWEeIU3tACEwYBhgL/s1600/IMG_8212.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="960" data-original-width="1280" height="240" src="https://1.bp.blogspot.com/-LZqr9LbGxAY/XeqyZ7H2-VI/AAAAAAAAGKE/2TaZSjWInugotYW4eKXVPUQ-yWEeIU3tACEwYBhgL/s320/IMG_8212.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">At the game with the Bigs. </td></tr>
</tbody></table>
It's only half irrelevant since I am now the proud fashion model of a left side drain(indwelling pleural catheter). Every other night, Phil drains it and I have some relief and opportunity to layish for sleeping. And in true Jen fashion, my right pleural cavity got all jealous like and juicy and now we are draining it in office as needed. Being able to drain at home is nice, but not without issues and the placement procedure was so stressful due to my inability to breathe- that I am not jumping at adding another one. yet.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-TwWj81eqS8w/Xeqya2BlywI/AAAAAAAAGKo/7EeYfU1Zf7kACmQlaOQEIkWt5SWIFT4yQCEwYBhgL/s1600/IMG_8250.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://1.bp.blogspot.com/-TwWj81eqS8w/Xeqya2BlywI/AAAAAAAAGKo/7EeYfU1Zf7kACmQlaOQEIkWt5SWIFT4yQCEwYBhgL/s320/IMG_8250.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">You know it's bad when the bathroom is your "sterile" zone. </td></tr>
</tbody></table>
<br />
Our first home drain solo was on the 30th and before Phil's birthday festivities. I've always been the gift that keeps on giving. It went well- despite sterile gloves not fitting and the horrendous rashes I develop from adhesives and dressings- so each change means ripping open something- while trying to keep the general area sterile. Kiera has been an amazing help getting me to appointments and was educated on dressing changes so she's been Phil's left handed right hand help and my comic relief and co christmas decorator. Lily asks repeatedly to watch, she's also been amazing at getting me to rest and giving me much needed hugs and support.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-dRdOK8OGNPI/XeqyahC1B0I/AAAAAAAAGKk/yyokzzhcY1AcT9KUiFPY-pKWLpnQVi_8wCEwYBhgL/s1600/IMG_8240.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://1.bp.blogspot.com/-dRdOK8OGNPI/XeqyahC1B0I/AAAAAAAAGKk/yyokzzhcY1AcT9KUiFPY-pKWLpnQVi_8wCEwYBhgL/s320/IMG_8240.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Dos. Not sure dos of what....</td></tr>
</tbody></table>
<br />
I think constantly of my time with my dad and am so sad and grateful for my beautiful children and their gifts. I also hate that our roles have reversed and there are so many things I just can not do. I do not want to be a burden. I do not want the sick day memories to stick. Phillip and Bella cope differently and are very quiet. I worry. A lot. We have talked a bit about where we are at, what's going on, which is difficult because who flipping knows? So I spent time talking to each of them about the importance of family, but also having someone else to be their person. Even better is to have people, a tribe- like my mutants. Lily totally grasped this at camp and excels at it. The gingers are quieter, more introverted- covering with some pretty funny shenanigans. They each picked a person or people, then I reached out. It was comforting and excruciating to make these connections. Gratefully our people remind me that these are the honors, not the burdens of loving someone.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-GL69rK2RI8Q/XeqyaPLwBXI/AAAAAAAAGKo/fdcEXquP4VUujrlQ2iZDrOdWZxlo_ThbgCEwYBhgL/s1600/IMG_8151.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://1.bp.blogspot.com/-GL69rK2RI8Q/XeqyaPLwBXI/AAAAAAAAGKo/fdcEXquP4VUujrlQ2iZDrOdWZxlo_ThbgCEwYBhgL/s320/IMG_8151.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Taste testers. </td></tr>
</tbody></table>
<br />
As for a plan. Here's what I know. We are in what mutants call- Shark closest to the boat phase. I have multiple big sharks circling and we have to try and figure out the biggest threat before another one strikes(Halloween costume make a little more sense now?)<br />
<br />
My sharks are the high tumor burden in my lungs, creating the fluid and overall making the ability to breathe rather stressful; big progression in my hip, which puts me at risk for a major break and me not being a good candidate for surgery due to aforementioned shark; a new abdominal node/lesion/tumor that they think is probably a sarcoma- you know just for funsies.<br />
<br />
So the docs have been trying to find ways to determine which what is the biggest threat- my lungs decided that first....and now we've submitted genetic tests to see if I have any markers to indicate one chemo might be better than another and I failed at even attempting a biopsy because I can't lay on my back. SO I've gone from saying lets not just thrash and burn, lets be specific to saying- um guys- we gotta do something and quick- I'm drowning and there are sharks. And when there are sharks- Mutants Assemble. I am looking forward to next week being filled by 3 of my favorite sisters being here to attend to the chaos of where we are.<br />
<br />
My future will involve icky chemo and we are weighing options and agonizing over "options" while draining all of the love and hugs I can into my family. No one knows what the future holds. A few days ago, a gunman walked onto base and took lives. Every day I am thankful Phil comes home, my children are doing ok, and I am here with them. I reach out when I can, talking on the phone is very difficult with the oxygen, so text and messaging works better for me.<br />
<br />
Speaking of oxygen- I have Johnny 5( he's the big air compressor I use at night) and Vader- the lil loud guy who I lug around with me, thankful for the breathing.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-ZC9gcMFjLUA/Xeqye9BKZWI/AAAAAAAAGKY/5_lxBJBBVwU2--8bQI-iBB55vQWaUqPMgCEwYBhgL/s1600/IMG_8243.m4v" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="240" data-original-width="320" height="320" src="https://1.bp.blogspot.com/-ZC9gcMFjLUA/Xeqye9BKZWI/AAAAAAAAGKY/5_lxBJBBVwU2--8bQI-iBB55vQWaUqPMgCEwYBhgL/s320/IMG_8243.m4v" width="179" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">"Jenny- I am your BREATHER!" - Trish</td></tr>
</tbody></table>
<br />4monkeyshttp://www.blogger.com/profile/12770518256915325592noreply@blogger.com4tag:blogger.com,1999:blog-129030241525479145.post-87612975325304946252019-10-18T12:29:00.000-10:002019-10-18T12:29:21.838-10:00Effusions in Plural<div class="WI9k4c" style="background-color: white; color: #222222; display: table; font-family: Roboto, arial, sans-serif; font-size: small; word-break: break-word;">
<div class="GgmXif jY7QFf" style="font-size: 28px; line-height: normal; margin-bottom: 0px; min-height: 36px;">
<div class="DgZBFd" style="line-height: 36px; vertical-align: top;">
<span data-dobid="hdw">ef·fu·sion</span></div>
</div>
<div class="S23sjd" style="color: #70757a; font-size: 14px; line-height: 16px;">
<span class="XpoqFe">/əˈfyo͞oZHən/</span></div>
<div class="K6GhFd" data-is-bilingual="false" jsaction="BtuVOb:V46pce" jscontroller="AImii" style="max-height: 0px; opacity: 0; pointer-events: none; transition: max-height 0.3s ease 0s, opacity 0.3s ease 0s;">
<div class="b8aKlc" style="padding: 8px 0px 6px;">
<a href="https://www.google.com/search?rlz=1C5CHFA_enUS807US809&q=how+to+pronounce+effusion&stick=H4sIAAAAAAAAAOMIfcRoxS3w8sc9YSnDSWtOXmPU5uINKMrPK81LzkwsyczPExLhYglJLcoV4pHi4uJITUsrLQaKWrEoMaXm8SxilczIL1coyVcoAOrJB2pKVYApAQCFSHBpWwAAAA&pron_lang=en&pron_country=us&sa=X&ved=2ahUKEwiY29TjtKblAhV4HzQIHdcbAY4Q3eEDMAB6BAgAEAg" style="color: #660099; cursor: pointer; text-decoration-line: none;"><div class="S5TwIf" style="border-radius: 6px; box-shadow: rgb(223, 225, 229) 0px 0px 0px 1px inset; display: inline-block; overflow: hidden; padding-right: 12px; vertical-align: top;">
<g-img class="FamOtd" style="display: inline-block; vertical-align: middle;"><img alt="" class="rISBZc M4dUYb" data-atf="1" height="32" id="dimg_11" src="data:image/svg+xml;base64,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" style="border: 0px; display: block; position: relative;" width="32" /></g-img><span class="fe69if" style="color: #3c4043; font-size: 14px; letter-spacing: 0px; margin-left: 10px; vertical-align: middle;">Learn to pronounce</span></div>
</a></div>
</div>
</div>
<div class="vmod" style="background-color: white; font-family: Roboto, arial, sans-serif;">
<div class="vmod" data-topic="" jsname="r5Nvmf">
<div class="vpx4Fd" style="color: #222222; display: table; font-size: 14px;">
<div class="pgRvse vdBwhd" style="height: 20px; padding-top: 10px;">
<i>noun</i></div>
<div aria-hidden="true" class="xpdxpnd vk_gy" data-mh="-1" style="color: rgb(135, 135, 135) !important; max-height: 0px; overflow: hidden; transition: max-height 0.3s ease 0s;">
<b></b><b></b></div>
</div>
<ol class="eQJLDd" style="border: 0px; font-size: small; margin: 0px; padding: 0px 0px 0px 20px;">
<li jsname="gskXhf" style="border: 0px; list-style: none; margin: 0px; padding: 0px;"><div class="vmod">
<div class="thODed Uekwlc XpoqFe" style="font-size: 14px; font-weight: lighter !important; padding-top: 10px;">
<div data-topic="" jsname="cJAsRb" style="color: #222222;">
<div style="margin-left: 20px;">
<div class="QIclbb XpoqFe" style="font-size: small; margin-left: -20px;">
<div data-dobid="dfn" style="display: inline;">
an instance of giving off something such as a liquid, light, or smell.</div>
<div class="vmod">
<div class="vk_gy" style="color: rgb(135, 135, 135) !important;">
"a massive effusion of poisonous gas"</div>
</div>
<div class="qFRZdb" data-dsk="true" data-dtpe="false" data-requery="false" jsaction="rcuQ6b:npT2md;see_full_definition:X4aiyd;g_popup_show:yJjTGf;dg_dismissed:pnFSEb;NAozHc:Gmtrjd" jscontroller="PDhHxc">
<div class="thes-chips-wrapper vmod liveresults-dictionary-thesaurus__tcl-o" jsname="KM35l" style="max-height: 30px; overflow: hidden; position: relative;">
<div class="thes-chips-container CqMNyc" jsname="deRYT" role="list" style="display: flex; flex-wrap: wrap; max-width: 100%; padding-right: 24px;">
<div aria-hidden="true" class="k6UgDb" style="flex-basis: 100%; height: 0px; overflow: hidden; width: 0px;">
</div>
<div class="q3q3Oc vmod fA5izc qFRZdb" style="display: inline-block; font-size: 13px; height: 24px; letter-spacing: 0px; line-height: 24px; margin-bottom: 2px; margin-right: 8px; margin-top: 6px;">
<div class="pdpvld" style="color: #188038;">
Similar: outflow, outpouring, flowing, rush, flood, deluge, torrent, welling</div>
</div>
<div data-mh="-1" role="listitem">
<br /></div>
</div>
</div>
</div>
</div>
</div>
</div>
<div style="margin-left: 20px;">
<div style="margin-left: -32px;">
<ul style="border: 0px; color: #222222; margin: 0px; padding: 0px;">
<li class="vmod" data-topic="" jsname="z0mti" style="border: 0px; list-style: none; margin: 0px; padding: 0px;"><div class="csWlI" style="display: list-item; font-size: xx-small; list-style-type: disc; margin-left: 25px; padding-top: 5px;">
<div class="QIclbb XpoqFe" style="font-size: small;">
<div>
<span class="mQo3nc hsL7ld" style="background-color: #eeeeee; border-radius: 2px; display: inline-block; font-size: 10px; line-height: 18px; margin-right: 6px; margin-top: -1px; padding: 0px 6px; text-transform: uppercase;">MEDICINE</span></div>
<div data-dobid="dfn" style="display: inline;">
an escape of fluid into a body cavity.</div>
</div>
</div>
</li>
<li class="vmod" data-topic="" jsname="z0mti" style="border: 0px; list-style: none; margin: 0px; padding: 0px;"><div class="csWlI" style="display: list-item; font-size: xx-small; list-style-type: disc; margin-left: 25px; padding-top: 5px;">
<div class="QIclbb XpoqFe" style="font-size: small;">
<div data-dobid="dfn" style="display: inline;">
an act of talking or writing in an unrestrained or heartfelt way.</div>
<div class="vmod">
<div class="vk_gy" style="color: rgb(135, 135, 135) !important;">
"literary effusions"</div>
</div>
<div class="qFRZdb" data-dsk="true" data-dtpe="false" data-requery="false" jsaction="rcuQ6b:npT2md;see_full_definition:X4aiyd;g_popup_show:yJjTGf;dg_dismissed:pnFSEb;NAozHc:Gmtrjd" jscontroller="PDhHxc">
<div class="thes-chips-wrapper vmod liveresults-dictionary-thesaurus__tcl-o" jsname="KM35l" style="max-height: 30px; overflow: hidden; position: relative;">
<div class="thes-chips-container CqMNyc" jsname="deRYT" role="list" style="display: flex; flex-wrap: wrap; max-width: 100%; padding-right: 24px;">
<div aria-hidden="true" class="k6UgDb" style="flex-basis: 100%; height: 0px; overflow: hidden; width: 0px;">
</div>
<div class="q3q3Oc vmod fA5izc qFRZdb" style="display: inline-block; font-size: 13px; height: 24px; letter-spacing: 0px; line-height: 24px; margin-bottom: 2px; margin-right: 8px; margin-top: 6px;">
<div class="pdpvld" style="color: #188038;">
Similar: outburst, outpouring, gush</div>
</div>
</div>
</div>
</div>
</div>
</div>
</li>
</ul>
<div>
<span style="color: #188038;"><br /></span></div>
</div>
</div>
</div>
</div>
</li>
</ol>
<div>
<br /></div>
<div>
LFS. Family. Camp. This was years in the making. An idea. A wish. A dream. </div>
<div>
<br /></div>
<div>
2019. Trish said. This is it. We are gonna do family camp. </div>
<div>
<br /></div>
<div>
6 board members became 5. Then 4. Life. LFS. Each of us tackling obstacles, health, business, family. Loss. </div>
<div>
<br /></div>
<div>
Montana. Camp MAK-A-DREAM. It's a bit expensive to get to, but totally worth it Trish said.</div>
<div>
<br /></div>
<div>
The Journey to Living LFS's First Family Camp began. Me spewing ideas, visions. A year and a half until camp became 6 months away, 6 weeks away, 2 weeks away.</div>
<div>
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-9rn7fCM1Eyw/Xao5YtUT7JI/AAAAAAAAF4Q/GiBtqGD_8KQklFl9jd7eJ4OOw4c5enKlQCLcBGAsYHQ/s1600/IMG_7160%2B2.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="900" data-original-width="1600" height="180" src="https://1.bp.blogspot.com/-9rn7fCM1Eyw/Xao5YtUT7JI/AAAAAAAAF4Q/GiBtqGD_8KQklFl9jd7eJ4OOw4c5enKlQCLcBGAsYHQ/s320/IMG_7160%2B2.JPG" width="320" /></a></div>
<div>
I would wake up at 3am. Unable to breathe. Alternately excited and terrified. So much could go wrong. But we are mutants. We know how to turn bad into a good time. There is strength in numbers. Plural. More than one. </div>
<div>
<br /></div>
<div>
1 week to go- both girls get colds. I have a cough. I "rest" by organizing and reorganizing what I need for camp. Bella is giddy, checking weather in Montana daily, hoping for snow. </div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-9MGOTmFt8Cg/Xao5dvj11xI/AAAAAAAAF5U/6n16qefMl5Ely4D2rCT4aoo2-MaEgSlxQCEwYBhgL/s1600/IMG_7216.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://1.bp.blogspot.com/-9MGOTmFt8Cg/Xao5dvj11xI/AAAAAAAAF5U/6n16qefMl5Ely4D2rCT4aoo2-MaEgSlxQCEwYBhgL/s320/IMG_7216.JPG" width="320" /></a></div>
<div>
<br /></div>
<div>
I am impossibly excited. and nervous. I am excited for the girls to meet others who know this crazy existence. I know how life changing it was for me to find my mutant tribe- and still I did not predict how effusive the impact would be on Lily and Bella in different, yet personal ways. </div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-Ytf9hmmreFo/Xao5Z7yCcII/AAAAAAAAF4U/meHp6ABcx9Q0Vg1VKgujIpKJ9kqDySgoACEwYBhgL/s1600/IMG_7188.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1203" data-original-width="1600" height="240" src="https://1.bp.blogspot.com/-Ytf9hmmreFo/Xao5Z7yCcII/AAAAAAAAF4U/meHp6ABcx9Q0Vg1VKgujIpKJ9kqDySgoACEwYBhgL/s320/IMG_7188.JPG" width="320" /></a></div>
<div>
<br /></div>
<div>
After a night of flying, Lily getting airsick, having an adrenal crisis and me failing miserably at finding any fun in it- the clouds cleared as soon as we were greeted at the airport by one of my favorite mutants, Mills- who transports us to one of my effusively happy places. House of Snark and Groot.</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-9b3V0WkpvHk/Xao5bA9Z0CI/AAAAAAAAF4Y/_Gv_zsLF1nYWKhkDPCK3luGx1973DFQ7gCEwYBhgL/s1600/IMG_7190.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://1.bp.blogspot.com/-9b3V0WkpvHk/Xao5bA9Z0CI/AAAAAAAAF4Y/_Gv_zsLF1nYWKhkDPCK3luGx1973DFQ7gCEwYBhgL/s320/IMG_7190.JPG" width="320" /></a></div>
<div>
<br /></div>
<div>
I'll be honest. There are MAJOR gaps in my memory. But I remember how being there makes me feel. The girls(BEE LAAAA) came alive. She and Mills not only share a birthday- but a really inappropriate bizarre sense of humor. Mutants are caretakers by nature, each in their unique way. They are my sistahs. When I am with them, I know things will be hectic but handled. </div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-ow8ZE-MhN-Q/Xao5dQpPpkI/AAAAAAAAF5A/e5BsE9fGMps252OYQIpkO-WDEngjj0sLACEwYBhgL/s1600/IMG_7211.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1202" data-original-width="1600" height="240" src="https://1.bp.blogspot.com/-ow8ZE-MhN-Q/Xao5dQpPpkI/AAAAAAAAF5A/e5BsE9fGMps252OYQIpkO-WDEngjj0sLACEwYBhgL/s320/IMG_7211.JPG" width="320" /></a></div>
<div>
<br /></div>
<div>
We make our way to Camp, sardined with blizzards worth of items and laughter. I am beyond grateful for the energy and efforts of the team. I feel perpetually exhausted but happy. Old friends. New friends.The outpouring of love and hugs takes my breath away. I assume it's the altitude. <div class="separator" style="clear: both; text-align: center;">
</div>
</div>
<div>
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-Rsp7jFG11KY/Xao5dx5PhdI/AAAAAAAAF5E/RfPoaEtJTQU55lltmhtja7Mre6l5u68jQCEwYBhgL/s1600/IMG_7240.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://1.bp.blogspot.com/-Rsp7jFG11KY/Xao5dx5PhdI/AAAAAAAAF5E/RfPoaEtJTQU55lltmhtja7Mre6l5u68jQCEwYBhgL/s320/IMG_7240.JPG" width="320" /></a></div>
<div>
The families are now MY families. After a day, the energy is hypnotic. This. This is what I wanted. For me. For the girls. For anyone who felt alone in this genetically mutated life that landed on us by happenstance. SO much laughter. Therapy over art and food and campfires. Getting more from the experience than I could ever give. Adventures like archery (talk about targeting tumors!)and ziplining, draw out even the most antisocial BEEE LAAAs. </div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-YHk9xwf-tRQ/Xao5evsnWUI/AAAAAAAAF5Q/FQEOKYMWpg0CUImCKbQVK0Dvp01TT5fDwCEwYBhgL/s1600/IMG_7277.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://1.bp.blogspot.com/-YHk9xwf-tRQ/Xao5evsnWUI/AAAAAAAAF5Q/FQEOKYMWpg0CUImCKbQVK0Dvp01TT5fDwCEwYBhgL/s320/IMG_7277.JPG" width="320" /></a></div>
<div>
<br /></div>
<div>
Learning from a carefully crafted team of counselors and professionals familiar with LFS. The kids proffering their veins and blood to help research that promises to make living with LFS easier. Seriously- how awesome is a group who happily will get a poke during CAMP? And the amazing group who did it for us!<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-ybSD2rfhptM/Xao5etj3CQI/AAAAAAAAF5I/j2_mofeKm5MAKsFnuS4sOoFCn3OlkLKhQCEwYBhgL/s1600/IMG_7461.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://1.bp.blogspot.com/-ybSD2rfhptM/Xao5etj3CQI/AAAAAAAAF5I/j2_mofeKm5MAKsFnuS4sOoFCn3OlkLKhQCEwYBhgL/s320/IMG_7461.JPG" width="320" /></a></div>
</div>
<div>
<br /></div>
<div>
I walked up the hill, my lungs burned. As a Colorado girl, this was more than altitude. I couldn't catch my breath. Damn. Damn. Damn. I wanted to hike up the mountain with the group, yet here I could barely make it from cabin to cabin. Lily started hovering. She knew. She said I was breathing funny at night. I think she'd ask me 53 times a night if I was ok. Yeah I'm ok. </div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-Dffu2NARvI0/Xao5fxg_cgI/AAAAAAAAF5Q/FrI1o05sWGgQO34a35ITaFVZbEXyLVLhACEwYBhgL/s1600/IMG_7547.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://1.bp.blogspot.com/-Dffu2NARvI0/Xao5fxg_cgI/AAAAAAAAF5Q/FrI1o05sWGgQO34a35ITaFVZbEXyLVLhACEwYBhgL/s320/IMG_7547.JPG" width="240" /></a></div>
<div>
<br /></div>
<div>
We closed out camp with an amazing talent show, Lily sneakily getting Bella to perform and everyone walked back to their cabins, the pathway lit by lanterns in honor of those we lost. The next morning, a welling hangover. Mutant fun hangover which led to sudden withdrawal. The comfortable fuzziness enveloping us as we prepared for see ya laters. <div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-iYN5qfkDOtU/Xao5f2Ge4-I/AAAAAAAAF5M/lJ-c6f7cUnEBD06J1Sh7aJexzh4JbGHwACEwYBhgL/s1600/IMG_7612.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://1.bp.blogspot.com/-iYN5qfkDOtU/Xao5f2Ge4-I/AAAAAAAAF5M/lJ-c6f7cUnEBD06J1Sh7aJexzh4JbGHwACEwYBhgL/s320/IMG_7612.JPG" width="240" /></a></div>
</div>
<div>
<br /></div>
<div>
Our flight the next morning was obnoxiously early. Lily, forever the planner was not satisfied with my laxidaisical attitude towards the day of flying. We somehow made it through- and I slept most of the flights. Which is not something I do. We arrived in Hawaii and the only thoughts perfusing my brain were a shower and my bed. And to breathe. I was coughing more and the pressure seemed to be increasing. I had thought about bumping my chemo appointment for the next day, but it was looking like I needed to be seen. </div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-nvZwnusWplc/Xao5fpOz9mI/AAAAAAAAF5U/RD69QvqOc7Ip5roD6hkvCEjllQRVTO8GQCEwYBhgL/s1600/IMG_7676.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1203" height="320" src="https://1.bp.blogspot.com/-nvZwnusWplc/Xao5fpOz9mI/AAAAAAAAF5U/RD69QvqOc7Ip5roD6hkvCEjllQRVTO8GQCEwYBhgL/s320/IMG_7676.JPG" width="240" /></a></div>
<div>
<br /></div>
<div>
I arranged for the man-child to drive me to clinic after his class. I called clinic to let them know I was kinda having a bit o trouble breathing. The clinic was swamped and I could tell they were feeling out how bad I felt. In the end we agreed I'd page the doc when I got there and I could head down for a chest xray. </div>
<div>
<br /></div>
<div>
She took one look at me, shook her head and said I was kinda gray. I disagreed and mentioned that although cold, it was sunny in Montana. At that point she started moving fast, she made the jump to pulmonary embolism. I didn't think it was that, but I had flown and honestly I wasn't sure which was worse emboli or toomahs? She personally grabbed my vitals(not great), a wheelchair and off the the ER with me. Phillip just kept shaking his head. This is not how I thought today would go either. After tests and more tests and a couple more tests. We ruled out pulmonary embolism and were leaning towards pleural effusion. </div>
<div>
<br /></div>
<div>
The pleura line the lungs, sometimes fluid collects there- due to infection or you know, cancer. It causes that whole I can't breathe thing. effusively. After some oxygenation and antianxiety meds, the doc agreed I could go home if I returned the next day to see the pulmonologist. I had to maintain a certain oxygen level while walking around the ER in order to get my pass. This wasn't like I was trying to cheat the system - I kinda like breathing. I knew about pleural effusions from my various cancer support groups. They can be inoccuous or well, noccuous. </div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-AgTHlr95Muk/Xao5W_icfsI/AAAAAAAAF5Q/-v-7tko7SpEYYksA8FlWR-WIMbOgcbtugCEwYBhgL/s1600/IMG_0760.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://1.bp.blogspot.com/-AgTHlr95Muk/Xao5W_icfsI/AAAAAAAAF5Q/-v-7tko7SpEYYksA8FlWR-WIMbOgcbtugCEwYBhgL/s320/IMG_0760.JPG" width="240" /></a></div>
<div>
<br /></div>
<div>
I felt pretty yuck. I kinda just wanted to sleep but then the coughing and the gasping. We found our way back to Tripler the next day and got to introduce a nice young pulmonologist to what happens when Jen is de-oxygenated, stressed and left in a room with little entertainment. Fingerless gloves. And snide comments about how I know all about stuff and stuff, you know cuz grey's Anatomy. Then random quizzes on LFS. Which he said probably really wasn't a cause here, to which I explained- zebra unicorn pegasus theory. We grow weird. Don't assume it is or isn't. Or in this case don't effuse it is or isn't. </div>
<div>
<br /></div>
<div>
Normally I think I'd be more panicked about a big needle(sorry they use the term CATHETER- less intimidating? and oh yeah despite being asked publicly 53 times if I could possibly be pregnant....no, one needs to have certain parts for that-then suddenly a receptionist holds up a post it with "Pregnant? Yes or No?" ) wt actual eff? </div>
<div>
<br /></div>
<div>
Anyhoo- the thoracentesis itself was fairly quick and anticlimactic compared to the whole drawn out suffocation act I had going on- so yay. There was fluid, and coughing and more fluid and breathing and a little soreness but mostly breathing. Look away if you don't care to see that Jen's pleural fluid looks just like pee...I think the doc and nurse were taken back that I wanted a pic with my fluid, but I mean people photograph EVERYTHING these days. Effusively. Plurally. <div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-Eh5p5v7jUC4/Xao5XqPoj8I/AAAAAAAAF5M/9Q9r4RxByOs2ItbBsehmsNOiJ3pe5kULgCEwYBhgL/s1600/IMG_0765.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://1.bp.blogspot.com/-Eh5p5v7jUC4/Xao5XqPoj8I/AAAAAAAAF5M/9Q9r4RxByOs2ItbBsehmsNOiJ3pe5kULgCEwYBhgL/s320/IMG_0765.JPG" width="240" /></a></div>
</div>
<div>
<br /></div>
<div>
Getting home, my lung readjusted to having space to do it's thing. There is some fluid in my other lung, and chance that the left side could fill back up but we deal with one step at a time. He removed over 800mL of fluid- sending off multiple containers to see if we are dealing with infection or cancer or what. For now I feel better. I can take a deep breath and look back on the camp experience with a clear mind and full heart and a effusive tribe of superheroes. </div>
<div>
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-MVQNwRYorIo/Xao5gH5cF9I/AAAAAAAAF5U/oE9qAG6eMMMoa2sRv_nqY9c3rj_FYsB3ACEwYBhgL/s1600/IMG_7706.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://1.bp.blogspot.com/-MVQNwRYorIo/Xao5gH5cF9I/AAAAAAAAF5U/oE9qAG6eMMMoa2sRv_nqY9c3rj_FYsB3ACEwYBhgL/s320/IMG_7706.JPG" width="320" /></a></div>
<div>
<br /></div>
</div>
</div>
4monkeyshttp://www.blogger.com/profile/12770518256915325592noreply@blogger.com3tag:blogger.com,1999:blog-129030241525479145.post-41803149506432510542019-09-15T19:41:00.000-10:002019-09-15T19:41:00.386-10:00Life, Balance, Onward. Every few days- I think- I should update the blog. Then life swirls in and we are swooshed past, around, under, over and away from the update I was about to give. 1 step forward, 1.5 steps back- encroaching on previous gains.<br />
<br />
So much happened over the summer, some HUGE Mallory milestones. Summers are historically busy for Phil, so we usually take on Home Improvement Mallory Edition. This year was no different. As Kiera geared up to fly the coop, these exercises are lessons and memories wrapped in a bundle. They also give me faith that she has the tools to tackle the obstacles which will inevitably be flung in her path. Yet she planned her dorm room space, pricing items and we spent a lot of time pre-bargain shopping.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-q49g7i0UI64/XX8d-N54BMI/AAAAAAAAFvE/8fCXjp98otQQbWJrQf-Oj4Yu4m4KnEKfgCLcBGAsYHQ/s1600/IMG_6965.HEIC" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://1.bp.blogspot.com/-q49g7i0UI64/XX8d-N54BMI/AAAAAAAAFvE/8fCXjp98otQQbWJrQf-Oj4Yu4m4KnEKfgCLcBGAsYHQ/s320/IMG_6965.HEIC" width="240" /></a><a href="https://1.bp.blogspot.com/-qX5SxMnzVAQ/XX8bi7JzQKI/AAAAAAAAFuo/55fosZqf5AMDKBeCPU7wu9HUpOQzSJFgACLcBGAsYHQ/s1600/98%2Bring%2Bdance%2B1.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1133" data-original-width="1600" height="226" src="https://1.bp.blogspot.com/-qX5SxMnzVAQ/XX8bi7JzQKI/AAAAAAAAFuo/55fosZqf5AMDKBeCPU7wu9HUpOQzSJFgACLcBGAsYHQ/s320/98%2Bring%2Bdance%2B1.jpeg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-XuQ4apLCZaY/XX8cDBsVLlI/AAAAAAAAFuw/sQ3wSIkOvoQqMwpuLZPTqvt9u6vihtThwCLcBGAsYHQ/s1600/98%2Bring%2Bdance.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1161" data-original-width="1600" height="232" src="https://1.bp.blogspot.com/-XuQ4apLCZaY/XX8cDBsVLlI/AAAAAAAAFuw/sQ3wSIkOvoQqMwpuLZPTqvt9u6vihtThwCLcBGAsYHQ/s320/98%2Bring%2Bdance.jpeg" width="320" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<br />
I spent my "free" time just getting through daily tasks with help from the girls and squeeze in self care where possible. For me, philanthropy and crafts are self care. So I am trying to catch up on digital scrapbooking, aka "the historical documents" and gearing up for our first Living LFS Family camp- which Lily and Bella will go with me to.<br />
<br />
<br />
I am impressed and frustrated by how bad my memory is, that I have no idea where so many pictures live or how to combine them in a useful way. So after a mindnumbing few weeks, I just say screw it, pick the next year and try to scrounge up photos. Then shutterfly locks up and customer service says they cannot possibly ascertain what the problem is- have I cleared the cache, turned it on and off....the usuals. So I start researching other digital options, find mixbook and get back to work. So I figured- let's update via photos...and the same problems persist here.<br />
<br />
Soooo, Phil fortunately had a conference in Denver the same time I had parent Orientation at University of Denver with Kiera. Emotions were rampant for all of us on different levels. I was reminded again how lucky we are to have family and friends who are pretty much family, everywhere. SO many helping hands with Laundry, transportation, shopping and keeping me sane via big hugs. No offense to any, my favoritest hug was from my dear friend's 1 year old- Ginger Ninja. I am a bit partial to gingers- even blondey ones!<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-g9tpa5l-0KE/XX8cIZJ3ZUI/AAAAAAAAFu0/JDdegjvi-9cz-WWljWDzoxkBtiIHCagSwCLcBGAsYHQ/s1600/Screen%2BShot%2B2019-09-15%2Bat%2B7.21.34%2BPM.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="882" data-original-width="918" height="307" src="https://1.bp.blogspot.com/-g9tpa5l-0KE/XX8cIZJ3ZUI/AAAAAAAAFu0/JDdegjvi-9cz-WWljWDzoxkBtiIHCagSwCLcBGAsYHQ/s320/Screen%2BShot%2B2019-09-15%2Bat%2B7.21.34%2BPM.png" width="320" /></a></div>
<br />
As Phil's conference wrapped up( ask me sometime about the fascinating experiences with Guard Units from West Virginia and Kentucky.... all I have to say on that is :Moonshine and Bourbon)- he looks at me one afternoon in a very rare quiet moment and asks "she's gonna be OK right?" Yeah, she's gonna be great. So I sit and write her a card, reminding her that things get hard, but they also get good, and great. I am so ridiculously excited for her. I am just sad for how much I'll miss her- but that's so normal- I kinda also love it. I remember the freedom of Freshman year, following such profound loss. The loss this time is mostly mine, but it is worth it because the world is gaining so much more. We have laid a good foundation.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-XDXxQdJ2Oic/XX8ORYqSISI/AAAAAAAAFuQ/bSC2eW91Sec3givLZfJbr7p4qsXcPrwcACEwYBhgL/s1600/IMG_6987.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1280" height="320" src="https://1.bp.blogspot.com/-XDXxQdJ2Oic/XX8ORYqSISI/AAAAAAAAFuQ/bSC2eW91Sec3givLZfJbr7p4qsXcPrwcACEwYBhgL/s320/IMG_6987.JPG" width="256" /></a></div>
<br />
The past years have had some very not so pretty moments. When Kiera was little we often joked about keeping her off the pole, she always had a strange love of hotels and dancing. After a few rough times- she pulled it all together and excelled. Her future may very well contain hotels, but more in a management position as she is very excited to be studying Hospitality Management. Take what you love and make it work for you. Within 48 hours of our leaving, she was hired at Old Navy(great plan for winter clothes and spending money), joined the figure skating club(so much fun) and went to a frat party(boring). She is rooming in a suite with 3 other girls and navigating those waters very tactfully. All that sister experience comes in handy.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-AWy3mcs_jPc/XX8OQT-ejLI/AAAAAAAAFuQ/zTZKCKIQ7xgr2SAcs0rUD67s-PYmEhlDACEwYBhgL/s1600/IMG_6984.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1280" height="320" src="https://1.bp.blogspot.com/-AWy3mcs_jPc/XX8OQT-ejLI/AAAAAAAAFuQ/zTZKCKIQ7xgr2SAcs0rUD67s-PYmEhlDACEwYBhgL/s320/IMG_6984.JPG" width="256" /></a></div>
<br />
Phillip sometimes lacked focus but got where he needed to be. Sometime during Junior year this changed. I've wracked my brain, my faulty memories- was it something I did? Something I didn't do? His star crossed love? The wrestling concussions? Our medically chaotic existence? There is no answer. Calls to my mother in law, friends led to the conclusion that I sometimes get what I ask for- a very "normal" experience in the form of a man-child teen not quite adult. He's been floating. Searching. I wish I could spare him the experiences he seems bound and determined to have. His dad and I discuss constantly new approaches, assign good cop, bad cop. But most of all we love him and have faith he will find his way in his time. He is studying computer programming this semester, paying for courses himself, working at starbucks and working out. To those who understand and have given me hope, thank you. I think in our existence with cancer and LFS, there is often this sense of urgency to live, to accomplish certain things and he reminds me that sometimes we just have to live without the timeline ticking over our heads.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-JTqCODZTCN8/XX8POg7SKmI/AAAAAAAAFuc/nZA-jadoIykZlDEHngqfM2SRP1rfBTWLgCEwYBhgL/s1600/IMG_6637.HEIC" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://1.bp.blogspot.com/-JTqCODZTCN8/XX8POg7SKmI/AAAAAAAAFuc/nZA-jadoIykZlDEHngqfM2SRP1rfBTWLgCEwYBhgL/s320/IMG_6637.HEIC" width="240" /></a></div>
<br />
Lily is a Freshman. In HIGH SCHOOL. She is a born leader(aka control freak- yeah I'm talking about you LIL!) She amazes me every day and is bound and determined to have so many incredible experiences and to pick up where Kiera left off in caring for me. Which alternately heals and breaks my heart. She is struggling with anxiety(yep she's my kiddo), so we are working on techniques and ways to get her through scans, and life. She is really looking forward to Living LFS Family Camp and I am so excited for her to be around others who get it!<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-EtD6yLH1OaU/XX8OP4UCGeI/AAAAAAAAFuM/wLODQ9Mu4xk3BxVzbvKXlpT-9GuboMUoQCEwYBhgL/s1600/IMG_6559.HEIC" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1203" height="320" src="https://1.bp.blogspot.com/-EtD6yLH1OaU/XX8OP4UCGeI/AAAAAAAAFuM/wLODQ9Mu4xk3BxVzbvKXlpT-9GuboMUoQCEwYBhgL/s320/IMG_6559.HEIC" width="240" /></a></div>
<br />
Bella. Oh dear Bella. An 8th grader. She is a FORCE to be reckoned with. She keeps me laughing with entirely inappropriate humor for her age. I think she definitely channels her Grandpa Connolly with her sense of humor. She upgraded to bass clarinet in band, still plays piano and is Dobby's new sleeping buddy. She loves all things, weird and scary. Panic!At the Disco and Chucky are her current faves.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-O8D5FJnidFQ/XX8OPVmdOII/AAAAAAAAFuI/Kbmb1QqIjawIEqKr1DqXM4bkVQWJaYyBACEwYBhgL/s1600/IMG_6539.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1600" height="320" src="https://1.bp.blogspot.com/-O8D5FJnidFQ/XX8OPVmdOII/AAAAAAAAFuI/Kbmb1QqIjawIEqKr1DqXM4bkVQWJaYyBACEwYBhgL/s320/IMG_6539.JPG" width="320" /></a></div>
<br />
Phil. Is my Rock. I love him more than anyone or anything. He quietly handed me chocolate(rocky mountain chocolate factory chocolate- the GOOD stuff) tissues and wine as I slowly cut the college umbilical cord. He did say this was a new experience as he was just dropped off at the 'bus stop' for "college". I did remind him that his mom and I did the dropping and it was a looooong tearful drive home. He was allright- yeah?<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-XuQ4apLCZaY/XX8cDBsVLlI/AAAAAAAAFuw/sQ3wSIkOvoQqMwpuLZPTqvt9u6vihtThwCLcBGAsYHQ/s1600/98%2Bring%2Bdance.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1161" data-original-width="1600" height="232" src="https://1.bp.blogspot.com/-XuQ4apLCZaY/XX8cDBsVLlI/AAAAAAAAFuw/sQ3wSIkOvoQqMwpuLZPTqvt9u6vihtThwCLcBGAsYHQ/s320/98%2Bring%2Bdance.jpeg" width="320" /></a></div>
<br />
<br />
He drove me to the mountains, where my dad and brother's ashes are. He let me sit and purge all the emotions. I watched lightning and thunder move in, feeling the energy and electricity of it all. Bought the kids random Colorado souvenirs and a huge ol' sage stick to smudge my house with.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-z1BlPIcN-rk/XX8OPlOTvEI/AAAAAAAAFuE/ji2nnESXvlg5cHNAxPiXUHsal59E9JYYgCEwYBhgL/s1600/IMG_0668.HEIC" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://1.bp.blogspot.com/-z1BlPIcN-rk/XX8OPlOTvEI/AAAAAAAAFuE/ji2nnESXvlg5cHNAxPiXUHsal59E9JYYgCEwYBhgL/s320/IMG_0668.HEIC" width="320" /></a></div>
<br />
Kiera Facetimes me almost daily. I miss her a ton. We are busy. Doc appointments, school, life. Friends here meeting us on short notice for lunch pick me ups(thank you Heidi). Playing the mix n match chemo game is helping me figure out which side effects are from which med. yay me. Good times. It could be worse. I felt pretty good in Denver. My joints are doing better, but other cancer aches have increased. I am envisioning this as the herceptin killing off the new growth. The other meds keeping the other stuff stable and well- balance. My memory is crap, I'm super tired but all in all one foot in front of the other. We are man to man defense now instead of zone and although sometimes it's hard and lonely, I am so lucky. Lucky in love. Lucky in friendship. Still grateful for every day. Thank you for being a part of this crazy journey.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-yff_hhGfjOY/XX8OQ6wK3AI/AAAAAAAAFuM/ztqbz_EnW-QWwKc0Ws3BLheHyPvwuBkiwCEwYBhgL/s1600/IMG_6985.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1280" height="320" src="https://1.bp.blogspot.com/-yff_hhGfjOY/XX8OQ6wK3AI/AAAAAAAAFuM/ztqbz_EnW-QWwKc0Ws3BLheHyPvwuBkiwCEwYBhgL/s320/IMG_6985.JPG" width="256" /></a></div>
<br />4monkeyshttp://www.blogger.com/profile/12770518256915325592noreply@blogger.com2tag:blogger.com,1999:blog-129030241525479145.post-42760876333150313062019-03-11T14:39:00.002-10:002019-03-11T14:40:28.542-10:00Dancing with MONARCHsThere are many trials for breast cancer. In the past few years- awareness and research for metastatic breast cancer (breast cancer that travels and sets up shop in other body parts) has increased.<br />
<br />
Most trials get a number and a catchy name- because well cancer is business and pharmaceutical companies know this. The benefit may be life saving.<br />
<br />
As of last scans(PET/CT and brain MRI)- I have mixed results. Some spots are stable, some new spots and some old spots seem to be healed. The most concerning spots are in my hips, spine and a new little spot in my brain. This meant the therapy I was on (Kadcyla) was no longer doing enough to keep my cancer quiet. Hence the dance. After the hip mets, pain and radiation- I added an aromatase inhibitor(AI) to the routine.<br />
<br />
Sciencey part- skip on if you do not like. We have hormones. They do lots and lots of things. Mainly drive us insane in the form of teenagers. Certain hormones "feed" certain cancers. Some breast cancers are "fed" by estrogen and progesterone- normal hormones but very tasty to certain cancers. Breast cancers also can have a mutation in a human epidermal growth factor(HER2). The breast cancer treatment game changed big time with that discovery. So 3 things- ER(estrogen receptors) PR(progesterone receptors) and HER2 are commonly tested in breast cancers to determine most favorable dance partners. + meaning you have, - meaning you do not. In the world of breast cancer dance partner options- I have a great dance card +++, triple positive. This means aggressive cancers with quite a few options. Unfortunately what works is still and bit trial and error from person to person. Although these cancers don't always respond to hormonal therapies - directed at ER and PR- the mighty HER2 drugs are pretty effective, for a time. I've done 3 of these- herceptin, pertuzumab and kadcyla. Then I had my female plumbing removed to address the hormonal effects, then we added the aromatase inhibitor- which is supposed to help mop up any extra estrogen. And dealt with brain mets/tumor which is problematic because not so responsive to chemo.<br />
<br />
So we dance. Scan- treat- scan- repeat. I've been doing this for 7 years. Cancer is tricky and wants to survive. It's wants and a human's wants do not predict survival. You can want til the cows come home- pray, beg, plead, cleanse- most of it is a crapshoot. And with many chemos- it is very much a literal crap shoot. We've addressed the her2 successfully- now it was time to address the other 2 +'s.<br />
<br />
Many don't call these drugs chemo. Basically meds designed to step on Estrogen's toes- so it can't dance. Other meds are designed to stop the cell from growing at a certain point. Kinda like feeding your dance partner spiked punch and hoping their friend will drag them off the dance floor. The 2 meds I am now on are the result of a trial called Monarch. As in butterfly.<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-RX_DnX2OZ-Q/XIb_pi9s-3I/AAAAAAAAC_k/AfpeMguts88nuVwMDpBVF1b0mRhgw7KtwCLcBGAs/s1600/IMG_3564.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="900" data-original-width="1600" height="180" src="https://1.bp.blogspot.com/-RX_DnX2OZ-Q/XIb_pi9s-3I/AAAAAAAAC_k/AfpeMguts88nuVwMDpBVF1b0mRhgw7KtwCLcBGAs/s320/IMG_3564.jpg" width="320" /></a></div>
<br />
The Monarch butterfly has a lot of significance for many. It is a symbol of rebirth, life changes, transformation. We released butterflies at celebration of life ceremonies, seen them released at others, and I am always on the lookout for one to cross my path- a sign. I tend to agonize over treatment decisions. I'll admit, I am tired. My team has invested a lot in keeping me around under my terms, they've earned some trust. So when my onc recommended Faslodex and Abemaciclib- I took the paperwork home- set it aside and tried not to think about the 90 some percent chance of raging diarrhea- low blood counts, aches and pains and painful shots. I took Kiera and we found a prom dress- She's going with a friend we've known since they were babies. I went to Lil's Newsies production and last minute shopping with Bella- with ironing lessons. I finished up scrapbooks. Was completely unmotivated to clean- read several books. Started making leis for graduation. Talked with friends on the phone. napped. a lot. Busied myself with helping friends. Cried a freaking bunch. The night before my appt to get the new meds and shots- I looked up the meds. Because I could still say no. I had never heard of Abemaciclib, until I saw it's trade name- Verzenio- the mad pooper med. But in combination with Faslodex- they were effective prolonging survival and time to progression in the trial called Monarch 2.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://3.bp.blogspot.com/-lMJKTRn-xpk/XIb_kgBhKwI/AAAAAAAAC_g/L-quWDgh7l4k2YGWKOHlMRnVuVonq7wdwCLcBGAs/s1600/IMG_3544.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="239" src="https://3.bp.blogspot.com/-lMJKTRn-xpk/XIb_kgBhKwI/AAAAAAAAC_g/L-quWDgh7l4k2YGWKOHlMRnVuVonq7wdwCLcBGAs/s320/IMG_3544.jpg" width="320" /></a></div>
<br />
I've been struggling. Facebook depresses me, my kids are all teens and although funny- they are exhausting. This year I turn 43. Kiera graduates. These are two big events I have been working towards. "working" being taking chemo when I really really don't want to. Going up and down stairs like a person twice my age, losing feeling in my fingers, dealing with pain and exhaustion, all the time. 43 was the age my dad died. It's a new level in the dead zone. 25 years ago this May, I sat in the lobby of a funeral home downtown Denver as my mom planned his funeral. The name of the home: Monarch.<br />
<br />
So I dance, with Monarchs. I adjust to this change and transformation- letting go again of what was, what might have been and be grateful for what is.4monkeyshttp://www.blogger.com/profile/12770518256915325592noreply@blogger.com0tag:blogger.com,1999:blog-129030241525479145.post-67290789331166840542018-12-05T20:07:00.002-10:002018-12-05T20:07:54.773-10:00It Takes a Village, A Christmas Village.<div class="separator" style="clear: both; text-align: center;">
</div>
<a href="https://3.bp.blogspot.com/-DLL7mjaWeXw/XAisSDwLJ2I/AAAAAAAAC8s/89AaFC5WdqE5EPxwb52tWQ6r9MvpAwnUQCEwYBhgL/s1600/IMG_2409.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://3.bp.blogspot.com/-DLL7mjaWeXw/XAisSDwLJ2I/AAAAAAAAC8s/89AaFC5WdqE5EPxwb52tWQ6r9MvpAwnUQCEwYBhgL/s200/IMG_2409.jpg" width="150" /></a><br />
<br />
<br />
<br />
The Halloween Costumes still littered the floor with random candy wrappers and paper plates strewn about. Kiera started asking about Christmas...<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<a href="https://1.bp.blogspot.com/-chZcPk2BGDo/XAir1wG7mbI/AAAAAAAAC8U/7zz6z5Ssi5oLMb0EGF5isA1XLbYO6n21wCEwYBhgL/s1600/IMG_2029%2Bcopy.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://1.bp.blogspot.com/-chZcPk2BGDo/XAir1wG7mbI/AAAAAAAAC8U/7zz6z5Ssi5oLMb0EGF5isA1XLbYO6n21wCEwYBhgL/s200/IMG_2029%2Bcopy.jpg" width="150" /></a><br />
Months ago, she asked if she could help our friend Angel put up their (extensive) Christmas village. Years before, we had gone for a visit and the village was up- my girls were enthralled. I coordinated a date and a visit with Angel. Angel is one of my closest friends. And in our worlds, closest means infrequent texts and a couple visits a year.<br />
<br />
<a href="https://1.bp.blogspot.com/-Sdr9IiEyYQ4/XAiuYR0gmWI/AAAAAAAAC9A/fb3xsWrD-V0vf7vTwwWmOynMYo26EZCQgCLcBGAs/s1600/624.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://1.bp.blogspot.com/-Sdr9IiEyYQ4/XAiuYR0gmWI/AAAAAAAAC9A/fb3xsWrD-V0vf7vTwwWmOynMYo26EZCQgCLcBGAs/s200/624.jpg" width="150" /></a>She's one of those people I just connected with instantly. She's authentic, giving, and selfless. I had a daughter with cancer. She lost their daughter to a rare metabolic disease and now cares for her second daughter, with the same metabolic condition. When we first met, I knew she was my people and as the years went on, wondered why she still bothered to keep me on her list- because although she thinks I "get it"- I don't. How Could I? I did the 24 hour care of a fragile child routine for less than a year. It exhausted the eff out of me. I .can. not. imagine the years she and her husband have spent on that level of lack of sleep and adrenaline- and why?<br />
<br />
<a href="https://1.bp.blogspot.com/-BeZCW7ek7Xg/XAiuYed8aQI/AAAAAAAAC88/ZrBCzi5L3v0iyAOnWIunQDIINIOvzxzwwCLcBGAs/s1600/622.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://1.bp.blogspot.com/-BeZCW7ek7Xg/XAiuYed8aQI/AAAAAAAAC88/ZrBCzi5L3v0iyAOnWIunQDIINIOvzxzwwCLcBGAs/s320/622.jpg" width="240" /></a>For the smile of an Angel. And for her daughter, a royal, heavenly character, Anolani. A sweet little girl who was brought into the world with so much love- not changing millions profoundly, but profoundly changing those she encounters. Like her family. And me. I see Angel, she is run down, she misses her friends, she is overwhelmed by daily tasks, yet keeps on. Because somewhere among the chaos is pure magic. That is why.<br />
<br />
Bella had snuffles. We know that any illness is threatening to our little friend, so she graciously offered to stay home. Lily, Kiera, and I headed out to Angel and Ano's, excited to start the season of giving. We spent a lovely morning carefully unpacking and assembling a village of memories. Kiera taking the lead, carefully arranging everything as we ooohed and ahhhhed over every single one. We get it. Each house, each tiny person represents a memory in their lives. A memory we now get to be a part of. That to me is the magic of Christmas. The memories, the friendships, the family.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://4.bp.blogspot.com/-St5hmc__wxo/XAir1pgqEyI/AAAAAAAAC8I/ocI39X9dSl05UvqBO7nxJNnRmQcalX2kwCEwYBhgL/s1600/IMG_1988.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://4.bp.blogspot.com/-St5hmc__wxo/XAir1pgqEyI/AAAAAAAAC8I/ocI39X9dSl05UvqBO7nxJNnRmQcalX2kwCEwYBhgL/s320/IMG_1988.jpg" width="320" /></a></div>
<br />
It took years, to get here. Many of them, I wanted nothing more than to have a Colorado Christmas. For our family, between activities, work, medically, financially- it has not been feasible. We compromised one year and spent the New Year in Ca. Hawaii is paradise. My kids think Christmas smells like flowers and a tropical breeze. We go through our traditions, but it's been years since I've felt the magic. After time, I've realized the magic of Colorado is still there, most of it is securely wrapped in memories. Memories that we've built and arranged and fixed.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://3.bp.blogspot.com/-XzBmYTmUK2w/XAir3BxuB-I/AAAAAAAAC8Q/7ZdC6MgDqPkRvAcnnEd4HfbjE9wPSgBeACEwYBhgL/s1600/IMG_2270%2Bcopy.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://3.bp.blogspot.com/-XzBmYTmUK2w/XAir3BxuB-I/AAAAAAAAC8Q/7ZdC6MgDqPkRvAcnnEd4HfbjE9wPSgBeACEwYBhgL/s320/IMG_2270%2Bcopy.jpg" width="320" /></a></div>
<br />
I'm run down. I miss my friends. I miss my family. I am overwhelmed by daily tasks. My friend Trish sends a simple text. <i>Can you come visit? </i>I'm worried about her. I mull over the possibility. Then The possibility became reality.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://4.bp.blogspot.com/-RA8XSLXPoms/XAizXkw0YnI/AAAAAAAAC9Q/6h4m68CpB7ETcLMouZRTF0-EjveUtPEbgCLcBGAs/s1600/IMG_1775%2Bcopy.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1203" height="320" src="https://4.bp.blogspot.com/-RA8XSLXPoms/XAizXkw0YnI/AAAAAAAAC9Q/6h4m68CpB7ETcLMouZRTF0-EjveUtPEbgCLcBGAs/s320/IMG_1775%2Bcopy.jpg" width="240" /></a></div>
<br />
Kiera watches Hallmark Christmas movies year round. So this year we say screw it- we are goin snow balls to the wall and doing what we want- which is helping a friend set up a Christmas Village <i>the first week in November</i>. I had just returned before Halloween from getting to spend time with my nephews and their pretty awesome parents in CA, then on to see Trish.<br />
<br />
<br />
The cooler weather of Washington, the cool rain and even a few flakes of snow before I left cemented my drive to have a good holiday season. The personal space, the time with friends and family was just what I needed. They were gifts to me, by friends who know what it's like to be run down, missing friends, and overwhelmed. There were so many years I rushed thorough the motions- mentally calculating what really mattered. Packing it in, not having the chance to savor it. So many times it wasn't my vision. The gift was in the time. My gift to me was putting the fun holiday things first going forward.<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://3.bp.blogspot.com/-9rxf0gIwbGo/XAir3WFn-WI/AAAAAAAAC8U/w2Cq_G7_wfMsxGsI7lXHaghXqxJcWU4uwCEwYBhgL/s1600/IMG_2303%2Bcopy.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://3.bp.blogspot.com/-9rxf0gIwbGo/XAir3WFn-WI/AAAAAAAAC8U/w2Cq_G7_wfMsxGsI7lXHaghXqxJcWU4uwCEwYBhgL/s200/IMG_2303%2Bcopy.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">the elves.</td></tr>
</tbody></table>
<br />
Last night, Phillip steps in the house and says-<i> Mom, Have you gone FULL ELF? </i>Well we HAVE <br />
watched ELF the movie 3 times, while decorating<br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://2.bp.blogspot.com/-7uQaLtlmBE8/XAisTstT3XI/AAAAAAAAC80/r58GshxD3t4IO2oVBzt8w2lleEzFhc_jwCEwYBhgL/s1600/IMG_2417.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="150" src="https://2.bp.blogspot.com/-7uQaLtlmBE8/XAisTstT3XI/AAAAAAAAC80/r58GshxD3t4IO2oVBzt8w2lleEzFhc_jwCEwYBhgL/s200/IMG_2417.jpg" style="cursor: move;" width="200" /></a></div>
<a href="https://2.bp.blogspot.com/-UPzq6lqkmQQ/XAisTP7--fI/AAAAAAAAC80/ohRQqdA2SxYeFiKmTTTGIMPT54xmg6OFACEwYBhgL/s1600/IMG_2414.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="702" data-original-width="1242" height="112" src="https://2.bp.blogspot.com/-UPzq6lqkmQQ/XAisTP7--fI/AAAAAAAAC80/ohRQqdA2SxYeFiKmTTTGIMPT54xmg6OFACEwYBhgL/s200/IMG_2414.jpg" width="200" /></a>but it might have been the giant paper snowflakes and pool noodle candy canes littering the floor that gave him the idea. Our lanai still houses boxes- usually I rush to get things unpacked - this year I am working within energy confines and the participation of elves, intermittent at best.<br />
<a aria-label="Photo - Landscape - Dec 4, 2018, 7:52:28 PM" class="p137Zd" href="https://photos.google.com/photo/AF1QipOD7gnQUR-q9hXpJc-cH86OfKyyA12pJsFar71e" jsaction="click:eQuaEb;focus:AHmuwe; blur:O22p3e;" tabindex="0"></a><br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://3.bp.blogspot.com/--jRZmRyMeTQ/XAir2yl--EI/AAAAAAAAC8U/OAavr4mBQecKYveQhHl5pyqYa4n-GiBGgCEwYBhgL/s1600/IMG_2096%2Bcopy.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://3.bp.blogspot.com/--jRZmRyMeTQ/XAir2yl--EI/AAAAAAAAC8U/OAavr4mBQecKYveQhHl5pyqYa4n-GiBGgCEwYBhgL/s320/IMG_2096%2Bcopy.jpg" width="240" /></a></div>
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="clear: right; float: right; margin-bottom: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://3.bp.blogspot.com/-M_G0KLhb-bw/XAisSQyJ9GI/AAAAAAAAC8w/uTG3vpyE80AH9PvzabsQf2i4h54JzWqzACEwYBhgL/s1600/IMG_2333.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://3.bp.blogspot.com/-M_G0KLhb-bw/XAisSQyJ9GI/AAAAAAAAC8w/uTG3vpyE80AH9PvzabsQf2i4h54JzWqzACEwYBhgL/s200/IMG_2333.jpg" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">so much glitter</td></tr>
</tbody></table>
The commitments of gatherings and class parties and such has gone down dramatically, by nature and by choice. We had a Christmas painting night, The girls set up "a pretty" tree upstairs, our Tree is beautiful- and stocked with memories silver snowflakes and teal bows- the glitter oh so much glitter, they just wanted a more cohesive plan,<br />
<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="clear: left; float: left; margin-bottom: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-tYvwV3OmrP8/XAisSDmlVSI/AAAAAAAAC8w/cCtl-BnyzDonskKOP6VXr2ah6SKq2dTDgCEwYBhgL/s1600/IMG_2401.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="900" height="200" src="https://1.bp.blogspot.com/-tYvwV3OmrP8/XAisSDmlVSI/AAAAAAAAC8w/cCtl-BnyzDonskKOP6VXr2ah6SKq2dTDgCEwYBhgL/s200/IMG_2401.jpg" width="112" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">GRISWOLD Jr. after I removed several cords...</td></tr>
</tbody></table>
<br />
the Phillips put up outdoor decorations, Griswold style while Kiera and I hung greenery, white lights and red bows on the lanai. Then on a weekly trip to Costco- I found our Village.<br />
<br />
By ours, I mean Kiera's. We started it together, but it will be hers. The squeal of joy when she opened the box- the care she took finding each part and person a place. As she hugged me, there was magic. Kiera doesn't hug and she meant it. Over the years, her Village will change and grow. It will be moved, pieces will break, some will be fixed, others will break her heart. And someday she will get run down, she will miss her friends, us, and be overwhelmed. That will be time to call in the Village. Perhaps a good friend, or her mom will see what she needs and perhaps ask for a visit to set up the Village. <br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://2.bp.blogspot.com/-9HSOoxleLAM/XAir1qe4UGI/AAAAAAAAC8M/m9trgr_CW2ENuA41EwFvjMXHLCkxZ0edgCEwYBhgL/s1600/IMG_2093%2Bcopy.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://2.bp.blogspot.com/-9HSOoxleLAM/XAir1qe4UGI/AAAAAAAAC8M/m9trgr_CW2ENuA41EwFvjMXHLCkxZ0edgCEwYBhgL/s320/IMG_2093%2Bcopy.jpg" width="320" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
4monkeyshttp://www.blogger.com/profile/12770518256915325592noreply@blogger.com0tag:blogger.com,1999:blog-129030241525479145.post-59250043813796353392018-10-12T20:29:00.000-10:002018-10-12T20:29:23.097-10:00Oct 5-8. The Pause of Men. Over the past few days, I've had profound thoughts that get sidelined by normal stuff.<br />
<br />
And well my memory is crap so you will not get to benefit from any of them because I quite frankly don't remember. brain tumor side effect, chemo side effect, menopause side effect- who knows.<br />
<br />
After my first chemo stopped working- we attacked the cancer another route. I tried Aromatase Inhibitors(AI) which are actually pretty effective for metastasis. My joints ached, the anxiety was bad, insomnia, mini hot flashes. Menopause stuff. That's the point- zap all the hormones and conversion to hormones that feed the cancer. Those hormones have some positive balancing effects as well- bone density, joints and such(hence the aches), concentration, depression, temperature control... A lot of the same effects from chemo so I thought- eh it would be ok. Until it wasn't. So I stopped.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://3.bp.blogspot.com/-jJ9I3N-4oeo/W8GPhOH_c6I/AAAAAAAAC7M/aVsM48dM_awITZcdaNg7lFtjfCrPDSy7gCEwYBhgL/s1600/pt%2Brip.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://3.bp.blogspot.com/-jJ9I3N-4oeo/W8GPhOH_c6I/AAAAAAAAC7M/aVsM48dM_awITZcdaNg7lFtjfCrPDSy7gCEwYBhgL/s320/pt%2Brip.jpg" width="320" /></a></div>
<br />
With new bone activity- it's back to the AI. Funny enough, my hip/spine pain went waaay down- but my knees feel like I was a linebacker back in college. That was one of the factors that helped- the knees hurt- but no where near what the back was, so for now that a QOL improvement. I rarely get to sleep until after 3, spend most of the day in a fatigue fog, and well I'm always hot. Not in the good way. Let's not discuss the mood swings. It's not great for interpersonal relationships. Yet I am here and kicking and find things to laugh at and traditions to keep, like putting up Halloween decorations with Bella after she came with me to physical therapy.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-OpYQKVPomX4/W8GPgzhdxKI/AAAAAAAAC7I/G2vbCa_1cyEcpP6SQkvgZgDi1J_57Ya0wCEwYBhgL/s1600/bella%2Bpt.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1203" data-original-width="1600" height="240" src="https://1.bp.blogspot.com/-OpYQKVPomX4/W8GPgzhdxKI/AAAAAAAAC7I/G2vbCa_1cyEcpP6SQkvgZgDi1J_57Ya0wCEwYBhgL/s320/bella%2Bpt.jpg" width="320" /></a></div>
<br />
Then to keep things fun and interesting- Phil and I had an at home date nite. Because YOLO and we are overdue and the kids were all busy. I also wanted to have a glass of wine- or 3 and give pause to a momma friend whose son Brent's birthday was the 7th. Phil did not appreciate my completion of promised Menage a Trois.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://3.bp.blogspot.com/-mqKwWP4-xWY/W8GO1pFiRyI/AAAAAAAAC7E/4taDTV5P1zgt6Epf3fufY7yBr728ALWJgCEwYBhgL/s1600/menage%2Ba%2Btrois.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://3.bp.blogspot.com/-mqKwWP4-xWY/W8GO1pFiRyI/AAAAAAAAC7E/4taDTV5P1zgt6Epf3fufY7yBr728ALWJgCEwYBhgL/s320/menage%2Ba%2Btrois.JPG" width="240" /></a></div>
<br />
<br />4monkeyshttp://www.blogger.com/profile/12770518256915325592noreply@blogger.com0tag:blogger.com,1999:blog-129030241525479145.post-31012757938978520152018-10-05T19:40:00.002-10:002018-10-05T19:40:47.067-10:00Oct. 3-4. Family MattersWednesdays. Pinktober. I've never been a pink fan. To each their own. Pink ribbons and pink marketing, I think honestly the sports pinking bothered me the most. Instead of rage, I funnel that energy into other things.<br />
<br />
Yet this Wednesday was Mean Girls Wednesday. The soundtrack from the Broadway Production plays over and over in the girls' rooms. Suddenly worlds collide. Snark and awareness. Snarkness? Awark? kinda like woke but with more snark.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://4.bp.blogspot.com/-VP_d8OcTHGI/W7hKni0vFwI/AAAAAAAAC6s/-hgKFEuvmq8kvTsHIOs_OsT2Q5U9OWp_ACLcBGAs/s1600/IMG_1409.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="953" data-original-width="1600" height="190" src="https://4.bp.blogspot.com/-VP_d8OcTHGI/W7hKni0vFwI/AAAAAAAAC6s/-hgKFEuvmq8kvTsHIOs_OsT2Q5U9OWp_ACLcBGAs/s320/IMG_1409.jpg" width="320" /></a></div>
Girls are mean. Middle school and high school are tough. Thinking it matters what people think- finding you stand alone when it really counts and then if you are lucky- finding your tribe.<br />
<br />
At the high school here, they instituted business Wednesdays. The kids can skip wearing the uniform shirt, but have to wear at least business casual. Kiera and her friends- wear business pink. It's fetch.<br />
<br />
Thursday. Back to PT. It's good. I'm sore, but the PT helps. I run to walmart. yeah that's right, respect. 2 outings- one day- woop woop.<br />
<br />
Between errands- woop woop- I check messages. Lily's called, a message- Something about Bella a fight at school and oh dear. Teens. This really only affects what I buy for Bella at Walmart. and my entire weekend.<br />
<br />
By the time I'm done at walmart- bella is calling declaring she is sorry and will comply with whatever list of chores I decide. I decide we will continue this discussion at home.<br />
<br />
And that occupies my/our Thursday night. CSI Ewa Beach- piecing together the drama- like sands through the hour glass- so are the days of middle school. So no we aren't perfect, we are real and we spend a lot of our energy making the world a better place, one<br />
mallory at a time.<br />
<br />
<br />4monkeyshttp://www.blogger.com/profile/12770518256915325592noreply@blogger.com0tag:blogger.com,1999:blog-129030241525479145.post-87524851515790412352018-10-03T10:57:00.000-10:002018-10-03T10:57:33.410-10:00October 2- Therapy<br />
There are many types of therapy. Emotional, spiritual, physical, psychological, chemotherapy, radiation therapy, . Therapy can help you go on when everything else seems broken. Therapy is a part of life- and you can call it whatever you want- living, recharging, coping. But when you need help, its important to get help.<br />
<br />
After my dad died, I went to therapy for awhile. I didn't feel I needed it. It helped. a lot.<br />
<br />
After I got married, Phil worked long hours. With 2 kids at home-I struggled with my new identity. As most moms do after the warm fuzzy of new mom wears off. My therapy became schedule. Fixing up the house, making a home. Being momalicious. Immersing in the fighter wife culture.<br />
<br />
We moved to Hawaii, had a few more kids, way more debt and then the cancering hit. Inundated in saving Lily. Routine was our therapy. We went to some support group functions, yet although some of the needs were similar, each family has their own set. LFS put us on another plane. The kids met with a counselor while we were in clinic, which seemed to be all the time. The hospital hosted Oncology on canvas- a great art therapy opportunity.<br />
<br />
Years of cancering does a lot of damage. Emotionally, spiritually, physically. The collateral damage can be great. The long term effects surprising yet expected, never fun. After Lily was finished with chemo, was a dark time for me. Those around you expect that "you won", "you beat" the cancer. Everything is great. When in actuality- you survived. I just survived. I wondered when, how long we'd have before the next cancer would throw us back into the fray.<br />
<br />
Medical quiet time was short. We were just getting a handle on Phillip's diabetes when I became lumpy. A chunk of arm and breast sacrificed to the Cancer Gods with hope that we could buy time. If it can't be medically quiet, we learned to settle for time. We embrace life, check off bucket list items, hug a little more.<br />
<br />
The effects are cumulative. After awhile, your energy stores deplete, no matter how you try to replenish them. Others help get you to the next piece of calm.<br />
<br />
We kinda chart our own course. I went right from surgeries to travelling back to life. Before Cancer, I had been pretty healthy. You know- healthy enough for tumors to thrive. After, I stepped up physical activity and we ate even healthier. My cancer still metastasized. Chemo made me feel weak. My genetic counselor called because she went to a conference and found a great physical therapist near us. I could get acupuncture and they could help me feel stronger. Physical therapy became a valuable part of my routine. It got me out of the house, it kept me physical and overall helped me feel better.<br />
<br />
Sometimes I dance with cancer. Sometimes I dance with insurance issues to get the therapies that help. Every person is different. Each therapy shows that. One size does not fit all. So what I've learned- find what works for you. If it's getting up every day and doing a full face of make up-taking walks- drawing-writing- do it. Do it to feel better, do it for you.<br />
<br />
<br />
<br />4monkeyshttp://www.blogger.com/profile/12770518256915325592noreply@blogger.com0tag:blogger.com,1999:blog-129030241525479145.post-47534919606550963002018-10-02T00:24:00.000-10:002018-10-02T00:24:28.772-10:00October 1 - the heartDespite Kiera burning a pumpkin spice candle for the last month, October still snuck up on me.<br />
<br />
September’s focus was childhood cancer awareness for Living LFS. My favorite part of “the job” is support. I was overwhelmed by the response from parents willing to share their mini mutants. I messaged several throughout the month, exchanging stories, fears, hard times. We work really hard to stay upbeat. I started posting on my personal page about Lily’s cancers. I felt the love but also heard how hard it was. Yeah it was. So I stopped. She is my positive, every day. This month marks her 10th year as a survivor. That is huge. I also know how excruciating the month is for so many who have lost their babies. My heart broke a lot,.<br />
<br />
We also celebrated my 19th year as a mom. I mean Phillip’s birthday. We had our traditional Cheesecake Factory dinner with his friends then they went out on a yacht to celebrate. We are still transitioning with the man-child to adult thing. Cancer has eternally screwed, I mean skewed my perspective.<br />
<br />
October marks my 5th year with Mets. So appropriately, today was a chemo day. I have to say, I still dread it. The team is great. It really doesn’t hurt bad- I get a few pokes- I spend some time hooked to an IV, we go home. There is usually waiting. I’m not good with waiting.<br />
<br />
My blood work stalled. When it came back, I knew my nurse was going to be disappointed in my potassium levels. I haven’t been taking the supplements. It’s a process, I can’t swallow them, yada yada. Minor thing. She doesn’t harp, she problem solves- would I be more likely to take a smaller pill. Yeah. I only take about 9 pills a day- smaller would increase likelihood of compliance.<br />
<br />
My doc comes by and pets my feet. My left ankle is a little swollen- but I’m pretty sure that’s due to the new aromatase inhibitor-and my joints hurt and swell. Physical therapy is helping- my back pain has improved so much already I feel human again. How’s the lump?<br />
<br />
So Yeah she isn’t petting me out of love she’s looking for this random lump comes and goes on the top of my foot- X-ray declares it a bony spur thing and also found 2 other issues with that foot. I should probably name it so I remember it. But it is currently gone. So there. Doc is puzzled. Yeah yeah one lump at a time.<br />
<br />
Well my ECHO was last week. They look at the ejection fraction- a measure of how much blood the left ventricle pumps out. Many medications weaken the heart. Drugs are bad mmmkay? Unless they are saving you, but they still can have some bad effects. Perpetual risk - benefit analysis. One of the reasons I did not do chemo initially was fear of doing damage. The heart bears a lot of the strain, on many levels. My EF was lower- not bad- just hey what’s up kinda thing. Well my last EF actually went up, different tech- yada yada. So the overall decline wasn’t really big. I’m still in fine zone. Need to be careful- you know- take supplements and shit so my heart doesn’t have to work harder than it already does.<br />
<br />
We usually get home with an hour or two before the kids get back from school. I rest, Phil works out and runs to Costco for easy food for the week. He then grills dinner. I heart him so much.<br />
<br />
There were several newbies in the chemo bay and really I just kept silently chanting “bless your heart”. It was relatively quiet in the bay. One young mom has half her family there- fun grou-kept giving the dad shit. 2 older guys who slept very loudly. Lots of snoring. 2 other youngish ladies. I dread pinktober. You never know who is gonna show up looking like they’ve just taken a dip in Willy wonka’s pepto river. None today. A lady on her second chemo, very chatty very peppy- would fit right in with the mutants was chasing Pokémon with young mom’s husband. Young mom is struggling with iv and chair- obviously needing to go to the bathroom. She casually defends herself- I have no idea why I’m peeing so much. Oh that’s easy I told her- you are on your second bag of fluids- you will spend all your time in the bathroom. That causes you to pee? Um yes, hydration causes you to pee. Bless her heart.<br />
<br />
2nd chemo Pokémon lady is quiet. Ah the Benadryl is kicking in. She mentions how she didn’t think chemo would be as bad as it was last week. She lived in the bathroom. Wicked indigestion and nausea. Yeah, ya think? Bless her heart. So I sing the praises of B12 shots. She had no idea they help with indigestion. Well they don’t really- but the truckloads of meds you take for the indigestion inhibit the absorption of b12, so extra helped me feel better. At which point nurse extraordinaire shooes me out the door before she has to give everyone b12 shots...but there could be worse things. Bless her heart.4monkeyshttp://www.blogger.com/profile/12770518256915325592noreply@blogger.com2tag:blogger.com,1999:blog-129030241525479145.post-60785678493129005062018-09-24T16:22:00.000-10:002018-09-24T16:22:35.995-10:00A Pain in the Arse. These Hips don't lie. A few months ago my lower back and right hip started hurting. I know radiation effects can take some time to show up, so I wasn't shocked. Annoyed. Put out. Hurting. But not surprised by the latest pain in my ass. Literally. See kids- that's how you do it.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://2.bp.blogspot.com/-y4t6pOUxC80/W6mafyb-SKI/AAAAAAAAC6k/F1eAGZMlmBQ4zxvrBCe8K5_ye1f1bS6OQCEwYBhgL/s1600/IMG_1220.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1600" height="320" src="https://2.bp.blogspot.com/-y4t6pOUxC80/W6mafyb-SKI/AAAAAAAAC6k/F1eAGZMlmBQ4zxvrBCe8K5_ye1f1bS6OQCEwYBhgL/s320/IMG_1220.JPG" width="320" /></a></div>
<br />
After Phillip was born, I had sciatica. It sucked. The zinging shooting pain. I love to walk. Soon enough I couldn't. I iced, I stretched, I lotioned, I saw a chiropractor, tried ultrasound. The physical therapist told me that Phillip was a big boy and I probably would only find relief when he started walking. He was right. After I had Kiera- I took precautions and at the first stinging twinges, I would ice and stretch. By the time I had Lily, I had successfully avoided sciatica again, trading it for intermittent plantar fasciitis. Mostly weight related. As my weight crept up with the steroids and comfort eating, so did the cramps and nerve pain in my foot.<br />
<br />
The new pain in my back felt like sciatica, but not quite the right spot. I hoped it was sciatica. I did what I thought would help. Day by day, it got worse. I remember the first time I made it half way around the block with Dobby and it was hurting so bad, but you know- sciatica- it wasn't going to kill me. I just needed to stretch. Ice. Sit for a minute. I sat upstairs ugly crying out of frustration. Pretty soon, I was a one woman sob show for Team Mallory. Phil wanted to call the on call nurse. Nah- It's ok. We'll talk about it the next appointment. Me, secretly hoping like most symptoms do- it would resolve by then. It did not.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-0yPLGaxlYQo/W6mZsRq0dTI/AAAAAAAAC6I/XPi742CPEIUPSHFO4C8vLADiy0hdK6hOgCEwYBhgL/s1600/IMG_0831.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://4.bp.blogspot.com/-0yPLGaxlYQo/W6mZsRq0dTI/AAAAAAAAC6I/XPi742CPEIUPSHFO4C8vLADiy0hdK6hOgCEwYBhgL/s320/IMG_0831.JPG" width="240" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Does this Lazy Boy make me look fat?</td></tr>
</tbody></table>
<br />
<br />
My onc shook her head, it's probably not sciatica. Lets order a scan. So we scanned. It could be this, it could be that, it's probably mets. Here's the deal, I couldn't remember which hip was irradiated. Gasp, be appalled- think it's careless. I forgot to log the fricking brain surgery on one of my last scans. And that was a big deal- I assure you I did not forget having brain surgery. Phil said look for the tattoo the techs do it to mark where you had radiation.. Fuck, there are tattoos on both sides, I told them to do an elephant. I looked through my records. It's not that these details aren't important- I have just collected so many of them- for multiple people. And I'm a bit tired. The pain was prohibiting sleep and walking. The pain meds I got were no better than ibuprofen- so I started taking a lot of ibuprofen. Looking through my records meant a day of trying to organize a bin that I've been tossing all of our records into. The only relief came when Phil got me a little blue lazy boy.<br />
<br />
Then it started getting worse again. I couldn't focus. I didn't want to leave the house. was maxing out hospital size doses of ibuprofen and barely making it to the next. Then there were hurricane warnings. I'll be the first to say- I handle emotional pain much better than physical pain. Probably why I was gifted with 3 girls. Emotional torture times 3. I also do not function well on lack of sleep. I was getting to breaking point. Getting up the stairs was getting tougher. I was just holding out for my next appointment- Phil kept a memo of "demands" on his phone and would plead with me to just call the nurse. I declined. Then one day I had to run an errand, I realized I hadn't been out of the house days and hadn't driven in even longer. As I went to lift my leg to get in the car, it was like lead. It banged against the side of the car. It took three tries. I sat in the car and cried. Piece by Piece. Bit by Bit. I was losing me.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-H9spi36mrUA/W6maJdclGoI/AAAAAAAAC6Q/lf8plbzyIDINsK5qDrKpfqucSfzOujxrgCEwYBhgL/s1600/IMG_0841.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1080" data-original-width="1080" height="320" src="https://4.bp.blogspot.com/-H9spi36mrUA/W6maJdclGoI/AAAAAAAAC6Q/lf8plbzyIDINsK5qDrKpfqucSfzOujxrgCEwYBhgL/s320/IMG_0841.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Hurricane Bite Me</td></tr>
</tbody></table>
<br />
After the storm passed and another was on its way-I hadn't slept more than an hour- I felt awful, Lily had an appointment the next day, I was gonna stop in oncology and see if I could up my med game. Instead I spent the night in my pretty blue chair and sobbed. I had taken to spending nights reading or watching tv. Phil was sleeping with earplugs and a mask and I wasn't the only one sporting circles under my eyes. I heard Phil getting ready for work, I don't ask him to stay home unless it's bad, I was going to ask him to stay. He took one look at me and asked if I wanted him to stay. Not need. want. Yes. He was supposed to fly and I still worry all these years and I didn't want to worry and I just wanted to sleep. So he tucked me in, and took care of the day. He even brought me home good meds. Good meds that took the edge off and I could sleep.<br />
<br />
The next chemo and appointment, we went over everything. Phil usually goes because I put on a brave face. He's my big ol tattletale. I don't like taking heavy duty meds. They are addictive, they cause side effects, they can be very tough on your organs. My onc let me know that cancer pain is very different. The dose I was taking for pain was miniscule to what many patients take around the clock. I think part of it is feeling that being reliant on pain meds in another step in the progression and emotionally another blow. BUT living in pain is not a good quality of life- so there we were. I also wanted to go back to the PT place closer to us. They actually called the next day and got me in that week. And an appointment to meet with the radiation onc.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-W9BoSVywBlM/W6maf0oqwVI/AAAAAAAAC6Y/7eDRrq-mstgNMPyibus-d2ycuuA_KM3jgCEwYBhgL/s1600/IMG_1249.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1203" data-original-width="1600" height="240" src="https://1.bp.blogspot.com/-W9BoSVywBlM/W6maf0oqwVI/AAAAAAAAC6Y/7eDRrq-mstgNMPyibus-d2ycuuA_KM3jgCEwYBhgL/s320/IMG_1249.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">My favorite.</td></tr>
</tbody></table>
<br />
I was sleeping better. PT offered definite relief and I started easing back my dose of ibuprofen. Today Phil was lucky enough to have the day off and we had another date at Tripler for my every 9 week ECHO(my heart is chugging right along) and a meeting with the radiation oncologist. As Phil looked for parking, the rad onc showed me the images. Confirming the radiation dose was in fact on the right side, the same side that's been getting worse and that throwing more radiation at it would probably not help. Which I had kinda already suspected. This is cancering. It's more of an art than a science on all ends. I had him print out some pictures so I could show Phil. I know he just wants to help fix it, I know me being in pain sucks for everyone. I know so many who live with chronic pain- and there are so many you would never know because they just get on with it. Others let you know every second of every day they are in pain. I am somewhere in the middle and do NOT want to be the latter. I tend to hole up when things get rough because why make anyone else suffer. Except my family- they are stuck with me.<br />
<br />
Phil spent some time processing and I could tell he thinks I am hiding something from him. I wish I were. I think I just have more experience in this bullshit. And this bullshit is bullshit. Essentially mutants like me are sensitive to radiation. They have not cracked the code on the details- essentially p53 helps fix DNA damage, our p53 is broken, radiation causes DNA damage- we can't fix it. BUT there is radiation all around us- yes big blazing ball called the sun, rocks, and bananas. Not all of it is bad and after all we are built to deal with it. Obviously our bodies can fix some damage- otherwise every time we would step out in the sun, we'd become one giant tumor. So the intensity and location matters. I had a very low dose on my spine and hip. So logics like my BFF say- ok- a little didn't work, throw some more at it. At the bad points, I had about 8 Grays(gray is the measure of radiation absorbed in mass), most cancer therapy radiation is 46-60 Grays given in 1-2 Gray doses. An abdominal X-ray is about .0007Grays. Around 10 grays is when the dose starts to get lethal in one shot. You'd have to eat 10 million bananas to get a lethal dose of radiation and if you can eat 10 million bananas in any sort of time, you have bigger issues. The other thing is radiation likes to marinate. You know how you spend an afternoon in the sun, then later you feel your skin getting warmer and warmer...<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-dmNG4WG0dQI/W6magK-mEeI/AAAAAAAAC6g/HDAj8FtW0LkOMeErIvL4RNPrhDEirGgpACEwYBhgL/s1600/IMG_1251.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1201" data-original-width="1600" height="240" src="https://4.bp.blogspot.com/-dmNG4WG0dQI/W6magK-mEeI/AAAAAAAAC6g/HDAj8FtW0LkOMeErIvL4RNPrhDEirGgpACEwYBhgL/s320/IMG_1251.jpg" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Does this CT make me look fat? bahahahaha-radiation field. </td></tr>
</tbody></table>
<br />
<br />
So we left with what I kinda knew. Radiation was a bust- may or may not have made things worse- it was worth a shot. My team kinda lets me call the shots. I call the shots based on quality of life. I was supposed to be on an anti hormonal medication called an aromatase inhibitor years ago. I tried it- it was not fun. Since my breast cancer expresses 3 different hormones- the idea is to take away the ones it feeds off of. We started with the chemical hysterectomy/oophorectomy. Then had to go surgical. So now this med will hopefully mop up extra bits and pieces. Side effects- aches, depression, night sweats, hot flashes, general menopausey kinda stuff- which I've had some experience with after the surgery. We are still on same game plan- keep the cancer as stunted as possible while having a decent quality of life. I've been very lucky. I've been on some sort of chemo for 5 years now and there are developments that are easier on the system. I've pulled back some more. I'm focusing on art therapy with the others. I'm hoping it will cool off soon and as Kiera says- stick a pumpkin up my butt and call me spooky. I've got meds for that now-so here's to happy haunting for awhile.4monkeyshttp://www.blogger.com/profile/12770518256915325592noreply@blogger.com0tag:blogger.com,1999:blog-129030241525479145.post-10724327051941153762018-08-09T15:28:00.000-10:002018-08-09T15:28:06.204-10:00Work, Working, Working out, Working it out. Holy hell summer is over. Almost. 2 of 4 monkeys are in middle school. We are back to kids in 3 schools instead of 4.<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://4.bp.blogspot.com/-vgLr1D1d2kM/W2kV483HCCI/AAAAAAAAC4k/Iu6pzcJ9N28Xy_N4w5eMgLkHPC6ooChsACEwYBhgL/s1600/IMG_0106.JPG" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://4.bp.blogspot.com/-vgLr1D1d2kM/W2kV483HCCI/AAAAAAAAC4k/Iu6pzcJ9N28Xy_N4w5eMgLkHPC6ooChsACEwYBhgL/s320/IMG_0106.JPG" width="320" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://2.bp.blogspot.com/-SPl4A4M35so/W2kWAT6SdDI/AAAAAAAAC4g/lB0B0HxGnvsjZJ_ak2QyByAUu4aD8LvmgCLcBGAs/s1600/IMG_0490.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://2.bp.blogspot.com/-SPl4A4M35so/W2kWAT6SdDI/AAAAAAAAC4g/lB0B0HxGnvsjZJ_ak2QyByAUu4aD8LvmgCLcBGAs/s320/IMG_0490.jpg" width="240" /></a></div>
<br />
Bella started 7th grade. After a summer of luxuriating on the couch to many delights of vines- video montage stupidity and sometimes hilarity for those(like me) not in the know- Bella could use some structure again. She did do band over the summer and I've failed at providing much more than that. The deal was- pick up her flipping room and she could paint her wall. Well finally last week, under Kiera's OCD supervision- they made it happen. She was given free reign- added some design and quite a few speckles of paint to the carpet. The carpet matches her in age, I wasn't too bothered. It's seen chemo med vomit, too high g-tube setting vomit regular vomit, and many other fluids both human and canine. She needed something of hers in a joint space. Ah. Parenting. It can be work, you just have decide at which end you want to put the work in.<br />
<br />
Lily spent the first part of summer going to cancer camp then participating in the Leadership program at school. Despite having the makings of a GREAT leader- they get to wear purple shirts- enuf said. Leadership is kinda like what we know as student council. sort of. She then had her MRI and jetted off the next morning to Cali to spend some quality time with her Aunt, Uncle, and Cousins. Bonus time was spent with Grandma and Grandpa Allen and Great Grandparents Bourne! When she wasn't reading and playing with the cousins, she got to explore all the culinary delights of the mainland. I told her to send pics- pics of food I got! It was so nice to facetime her and get to see the cousins. She had great experiences learning about her aunt and uncle's work- even getting a spin in a flight simulator! She got home and it's right back to routine- she's excited to catch up with friends, Leadership and is really helpful around the house. We have a couple more scans to look at some spots. Of course I am nervous- we are at her 10 year survivorship point- but I also know that this is WHY we scan- it could be nothing it could be something we can deal with. We won't know either if we don't check it out. Ah Parenting, it'll work out. Working on being positive and know we will handle whatever comes our way.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-XN0Gdvz1FJo/W2kV99NyKiI/AAAAAAAAC4s/y6nUdgZO6tQ-g8-2gSX4p9pOI0fyUvTNgCEwYBhgL/s1600/IMG_0488.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://1.bp.blogspot.com/-XN0Gdvz1FJo/W2kV99NyKiI/AAAAAAAAC4s/y6nUdgZO6tQ-g8-2gSX4p9pOI0fyUvTNgCEwYBhgL/s320/IMG_0488.jpg" width="240" /></a></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-2KDHXwzXSec/W2kXKOa193I/AAAAAAAAC44/7naRq-e6RhQVFCKuNxXWZs6zIXG-3btwgCEwYBhgL/s1600/IMG_0492.JPG" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><img border="0" data-original-height="1600" data-original-width="1600" height="320" src="https://1.bp.blogspot.com/-2KDHXwzXSec/W2kXKOa193I/AAAAAAAAC44/7naRq-e6RhQVFCKuNxXWZs6zIXG-3btwgCEwYBhgL/s320/IMG_0492.JPG" width="320" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
Kiera loves summer and to wear regular clothes. She jumped into a lot of activities at the beginning of summer- hiking, beach days, jumping off of rocks and waterfalls. Many details of these excursions, I did not know until later and was glad to have her in one piece excitedly telling me about them. She worked a lot at i-trampoline and has been great about putting money away, at Starbucks. Seriously, she has a plan, she works hard and did all the IB summer homework. Phil and I can both attest- we NEVER did that! After her back injury and ankle, she's shied away from dance. She misses it more than she says- every art piece features a dancer. Her community service project is a dance club, the dance is strong with her and I hope she finds a way to nurture it on her terms. I see so much of myself in her. It's bittersweet. I'm so proud and want to save her from so much all at the same time. Ah parenting, she's working and finding what's worth the work.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-5d6GH0xoViU/W2kX1aIDbBI/AAAAAAAAC5I/VSRC3y0hAeklgW0Y30_KrtEq_QPOMbyPwCLcBGAs/s1600/IMG_0498%2B2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1067" data-original-width="1600" height="213" src="https://1.bp.blogspot.com/-5d6GH0xoViU/W2kX1aIDbBI/AAAAAAAAC5I/VSRC3y0hAeklgW0Y30_KrtEq_QPOMbyPwCLcBGAs/s320/IMG_0498%2B2.jpg" width="320" /></a></div>
<br />
Phillip. The man-child. I wish he knew how proud of him we are so he wouldn't find every question to be an attack. Ah, parenting. It is just plain work. He is working at Safeway, promoted to cashier. Switching to UH Manoa this fall for more math/physics/whatever classes. Phil and I have many discussions about how to approach this phase of family and life. He is pragmatic, knows the man-child needs independence. I do too. There's a whole year that is a blur and huge chunks of others. He's been a great kid. He will do great things. He is a good human. He cares deeply. He's gifted in music. He's 18 (yeah parents of 18 year old hear me!) I personally am happy to have him here but do not want to be nanny, chef, maid to a man-child. And man-child has my number. So we invest time and thought and energy into figuring this road out, knowing we will find what works for us in our strange mix of normal under abnormal circumstances. I am trusting the foundation, remembering course correction is not failure but a way forward. I hug him whenever I can, I tell him I am proud of him and where I am coming from. Where his dad is coming from. I go with him to his scans yet make him fill out the paperwork despite every fiber in me wanting to just do it for times sake. It's just nice to be mutual support. And the good news is that everything is stable. Nothing to look into right now. That works.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://3.bp.blogspot.com/-P730FzwZpQY/W2kV8Zq4OMI/AAAAAAAAC4o/KtfUtHXFJ0wbHBTn8XhtFrVpGHjZ7BjJQCEwYBhgL/s1600/IMG_0156.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://3.bp.blogspot.com/-P730FzwZpQY/W2kV8Zq4OMI/AAAAAAAAC4o/KtfUtHXFJ0wbHBTn8XhtFrVpGHjZ7BjJQCEwYBhgL/s320/IMG_0156.jpg" width="240" /></a></div>
<br />
Phil. commander. Best Friend. Outstanding Dad. He works. a lot. I am so proud of the person and leader he is. He keeps reciting the need to remain "relevant". Despite my advice on relevance being relevant and that just because he's only doing 2 jobs instead of 3 in the air force, 3 could be family. I understand the fear- after 5 years of wondering healthwise, friends come, and go, and go. For the short while til they find job 3- trust me it wont be long. He arrives home asking why women are so mean to each other in the work place- cue any variation of our female offspring bickering....Dude when you find that out- we will be set. My very best women friends have all been the kind who help raise each other up. They make me want to be better because they are supportive. I shut down, especially now with the petty bullshit. There are certain social constructs that we fight for over and over and there are just as many that oppose them over and over. We work hard at being the best we can be, we work out one problem at a time and put a helluva lot of faith in it all working out. it might just surprise us.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://2.bp.blogspot.com/-9a7qzMSWYLk/W2kYerrPKfI/AAAAAAAAC5U/3galXgwYrlAaZFSwDJys72QhJBN52Wk2QCLcBGAs/s1600/IMG_0044.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1203" data-original-width="1600" height="240" src="https://2.bp.blogspot.com/-9a7qzMSWYLk/W2kYerrPKfI/AAAAAAAAC5U/3galXgwYrlAaZFSwDJys72QhJBN52Wk2QCLcBGAs/s320/IMG_0044.JPG" width="320" /></a></div>
<br />
So, Kiera comes home from work the other night, tears brimming.<br />
<i>I am resigning and I don't want to talk about it. </i><br />
<br />
Phil and I had been rather emotionally discussing the other childrens and other partnership type things as we closed up the house- I could tell he wanted to yank her down and demand an explanation. I just shook my head. Give her a minute to process and get settled.<br />
<br />
I walk into her room, computer perched on her lap.<br />
<i>Funny- they tell you how to apply for a job but there isn't anything about resigning.</i><br />
<i><br /></i>
<i>Perhaps if you tell me what happened, I can help. </i><br />
<i><br /></i>
Long story short- another employee bounced a golf ball off her head. No she does not work at a golf course. He did apologize in a snarky- dude I'm so proud I schwacked you in the head with my mad skills- way. She went to the manager and asked to leave early. Like her mom, she needs to process.<br />
<br />
I let her know under no circumstances is someone chucking a hard ball at her head ok- that she could have called the police. The only thing maybe to be done differently would have been to talk to her manager right then. Part of me thought; he probably likes her. WHAT THE FUCK? That. That. That is why we shouldn't spew all of our thoughts and all thoughts aren't gospel. NOT OK, Under any circumstances.<br />
<br />
<i>I just wanted to get away. If they look at the video they will see it all. </i><br />
<i><br /></i>
And I got it. That environment was not safe. She did not trust management enough to discuss it then. She resigned without naming names but because of unacceptable work conditions and inappropriate acts by a fellow employee. I told Phil and and his eyes got big- "He DIDN'T..." "She wasn't.." words drifting.<br />
<br />
No bud. You have 3 daughters. We can teach them all the tools in the book and shit can still happen. It will happen. We also have to give them the tools to deal. Before, during, after. And hope the tools never need to be used. Right now, we are mid tool dispensing but she's got the basics and I hate that. She's doing the right thing. He makes a point to tell her eye to eye- under no circumstances was that employee's behavior ok. She wasn't alone, we were there every step if she wanted or needed us.<br />
<br />
She went in the next day and had to explain. The manager checked the video then commented how Kiera wasn't lying, it was all on the video. Well no shit sherlock. Way to work out that mystery. First the doubt, Kiera offended her integrity had been questioned. The first reaction should be benefit of doubt not just doubt. And of course the other employees were bustling about the negative comments already on social media.<br />
<br />
And here's where we are still failing. She felt bad because he got fired. Phil corrected her- he got himself fired. As for the other employees, I'm sure many of them have their own tales to tell- but his girlfriend who was fired a few months ago probably shouldn't be throwing social media shade and regardless- unfollow, unfriend, dislike ,block. Not our kinda people. This friendship is not gonna work out.<br />
<br />
I look at the normals we face. I hate that something like this is categorized as "normal" and that we are still working it out. But this is life, the good, the bad, the work. Sometimes it works, Sometimes WE have to work it out.4monkeyshttp://www.blogger.com/profile/12770518256915325592noreply@blogger.com0tag:blogger.com,1999:blog-129030241525479145.post-59315769003384761092018-08-06T16:17:00.000-10:002018-08-06T16:17:54.767-10:00Just Exploring Every PossibilityWhen I was little, we'd head out to visit the grandmas. They lived in Toledo, off Willys Parkway. The exit marked by the huge JEEP plant complete with tall smokestacks bearing the letters OVERLAND.<br />
In high school, I dated a guy who went to Overland High School, I always thought of that exit. JEEP was a big deal, for the community for the world. My grandfather drove the generals around in Jeeps during the War. That exit always struck me as a little piece of history.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://2.bp.blogspot.com/-TkLrGnzdZ7I/W1r1dyX4jjI/AAAAAAAAC38/iSheWm0qfdgMsSHq-2hva7UJC9XsXJjrwCLcBGAs/s1600/Screen%2BShot%2B2018-07-27%2Bat%2B12.05.27%2BAM.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="922" data-original-width="824" height="320" src="https://2.bp.blogspot.com/-TkLrGnzdZ7I/W1r1dyX4jjI/AAAAAAAAC38/iSheWm0qfdgMsSHq-2hva7UJC9XsXJjrwCLcBGAs/s320/Screen%2BShot%2B2018-07-27%2Bat%2B12.05.27%2BAM.png" width="285" /></a></div>
<br />
You'd turn left onto Berdan, go under the I-75 overpass and head down the tree lined Willys Parkway until you hit Marcos Pizza and the Library off of Sylvania. We visited both quite a bunch during my childhood in Ohio. We even stopped for a potty break in 2012 when I took the kids on a tour of where the grandparents grew up.<br />
<br />
As my brother Bob and I got older, we knew neither one of us would be able to afford a car. The summer yard/kool-ade sales were just not cutting it. We decided that although we could not agree on anything, ever, we would but our first car together. He could pick the car, but I got to pick the color. He decided it would be a JEEP. I picked blue. That partnership dissolved as the giant tumor in his head took over.<br />
<br />
My parents got him a beater to drive around with what funds they could scrape together despite hospital bills, lost wages from caring for a sick kid and well, life. I refused to drive with him. He had a flipping brain tumor. I don't even know what happened to it- the car not the tumor, I know what happened to the tumor. I was a teen and really pretty involved in attempts at normal. Even I knew tumors weren't normal.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://4.bp.blogspot.com/-xS15EwNX1Vc/U-_SEJpeWGI/AAAAAAAABrY/jbu4w7sJo6A4AUSUeioxGqKGkybcyL2FQCPcBGAYYCw/s1600/Bob%2Bdriving.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1069" data-original-width="1600" height="213" src="https://4.bp.blogspot.com/-xS15EwNX1Vc/U-_SEJpeWGI/AAAAAAAABrY/jbu4w7sJo6A4AUSUeioxGqKGkybcyL2FQCPcBGAYYCw/s320/Bob%2Bdriving.jpeg" width="320" /></a></div>
<br />
When my turn to drive came. I learned on dad's van. Mom's Accord was stick shift and I just couldn't master it. I would drive my dad to the airport on travel weeks in exchange for use of the van. I was responsible for gas. Eventually dad upgraded me to my own 198o something accord. It was oldish, it had quirks, but ran and was generally reliable. And it was mine. I almost crashed it once- a story Phil loves to tell- in a time where I was 17, invincible and just trying to cope with death around me.<br />
<br />
When dad died, I got college tuition and a 1992 Saturn. I got to pick the color. It was blue. That little car ran back and forth between Boulder and C.Springs more times than I can count- in every variation of weather. I was a bit of a speed demon, sat through driving school to remove points for insurance purposes and paid hefty sums in speeding tickets. When Kiera came home with her first speeding ticket last month- I shrugged- pay it or go to court- your choice. She just wanted to pay it- worked some extra hours at work and based on my ride with her last night- the price was not quite high enough. I issued understanding and warnings. The choices are hers. May the odds be in her favor.<br />
<br />
She has a plan. She went and took the driver's test the first day she could, she took driver's ed, she got her probationary license and then her full license when she turned 17. Phillip got his license just so he would have one before her. He was interested in driving for freedom, he was not interested in the family car olympics.<br />
<br />
College started for Phillip last year, we thought he should stay near. We are in a time of Just Exploring Every Possibility, while managing health that is relatively quite(ish). Phil and I reminisce how we could not wait to get out and drive- rides with parents, were a last resort. I would give Phillip rides every so often. He didn't seem bothered. Kiera got car usage because she transported the littles to school and activities. He tried the bus. It was a fairly epic failure. He worked out a carpool with friends, schedules change. He tried the college shuttle(they have one of those!) but it's reliability was not great. Especially when you call 15 minutes before you need it. He tried biking it. Great for physical workout, but bike maintenance became a limiting factor. Yes we took this opportunity to talk about the expense of maintaining vehicles as he started looking for a car. Kiera gave up looking for a car when she realized she wanted a ticket off this island for college- a car would be an added hassle. The deal is - you buy it, you register it, and take care of everything. Just Explore Every Possibility.<br />
<br />
One night, he asks if he can buy a car. Not either of the 2 he's been exploring. I said standard requirements are still in place.<br />
Boy child:Can I write a check?<br />
Sure, DO you HAVE checks?<br />
No.<br />
Well that's kinda a problem. You will need to figure out the best way to transfer the money. Do not forget about registration and insurance and gas.<br />
Yeah yeah mom I got it. Can I use the car to go get it tomorrow?<br />
Would you like me to go with you?<br />
No, I got it. How will you get 2 cars home? Ryan's going with me.<br />
Allright. Good luck. Make sure you check everything and everything works. May the force be with you.<br />
<br />
Somewhere around noon, he knocks on the door with the biggest grin. The girls and I pile in his brand new 2009 JEEP Laredo. The interior is filthy but in good condition, everything seems to be in decent order except the air conditioning. He says he likes to ride with the windows down. I take the crew to Starbucks drive through to celebrate. I have no idea how this will play out but I'm very proud of this step. I also like that Laredo is the name of the middle school where Phil and I met. The road may be bumpy, but sometimes you just gotta jump in and explore. Anything's Possible.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-s3Y8SqskSRo/W1r0jvpv0kI/AAAAAAAAC30/cKn-Q337pRsktXj1Kro85ZKz-OGfvyqnACLcBGAs/s1600/IMG_203F65ABEFE8-1.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="315" data-original-width="420" height="240" src="https://1.bp.blogspot.com/-s3Y8SqskSRo/W1r0jvpv0kI/AAAAAAAAC30/cKn-Q337pRsktXj1Kro85ZKz-OGfvyqnACLcBGAs/s320/IMG_203F65ABEFE8-1.jpeg" width="320" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
So Bella and I are at Ross, Looking for new curtains fo her side of the room, and this. this calls to me. A sign. A sale. whatever. A possibility. We are never further from home than we think we are. </div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://3.bp.blogspot.com/--p27CbiXHzQ/W2kAtS1vNRI/AAAAAAAAC4I/JVXM4XPeZCECN2xN8jCVFkLCXIiCXEzKQCLcBGAs/s1600/IMG_0109.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://3.bp.blogspot.com/--p27CbiXHzQ/W2kAtS1vNRI/AAAAAAAAC4I/JVXM4XPeZCECN2xN8jCVFkLCXIiCXEzKQCLcBGAs/s320/IMG_0109.JPG" width="320" /></a></div>
<br />4monkeyshttp://www.blogger.com/profile/12770518256915325592noreply@blogger.com0tag:blogger.com,1999:blog-129030241525479145.post-81013530862925578082018-06-25T14:19:00.001-10:002018-06-25T14:19:19.636-10:00Survival of the Yeah-buts, Yeah-but holes and Relevance.Age 12- the super nasty precursor to the teen years. They figure as a parent, you have it figured out by now, how to adapt to your child. Don't know who they are, but they suck.<br />
<br />
Survival of the fittest is NOT THE CROSSFIT WINNER. Survival of the fittest has to do with an organism's ability to adapt. Ironically, for our family and many other families like ours- we are chronically trying to learn how to adapt and live with cancer.<br />
<br />
The preteen years- where they test the bounds of reasoning and arguing. You watch one child push another out of the way. Hey- watch it! It was an accident.<br />
<br />
It is not an accident because you got caught. Yeah-But....<br />
<br />
You know where yeah- buts live?<br />
<br />
resigned.....yeah-but holes.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-A43jdq_RPfk/WzGGTAQc9eI/AAAAAAAAC3o/qF2N1Cx6MmkBio5UCt2OiyA0LKDeWrnTwCLcBGAs/s1600/Screen%2BShot%2B2018-06-25%2Bat%2B2.17.46%2BPM.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="638" data-original-width="658" height="310" src="https://1.bp.blogspot.com/-A43jdq_RPfk/WzGGTAQc9eI/AAAAAAAAC3o/qF2N1Cx6MmkBio5UCt2OiyA0LKDeWrnTwCLcBGAs/s320/Screen%2BShot%2B2018-06-25%2Bat%2B2.17.46%2BPM.png" width="320" /></a></div>
<br />
<br />
The littles laugh hysterically. You said but hole! And that is why just a few months ago, the youngest thought she was hysterical- she would randomly yell penis. Until it got a reaction. It did not. Because well we are inappropriate like that in the yeah but hole. The deal is to know your audience, know the boundaries and for the love of all the yeah-buts do not embarrass in public.<br />
<br />
We struggled with Bella this year, helping her find her place, her way, her. Phil consistently reminded me, we've done this before with each child. Yeah-but each child is their own being, we have to adapt our parenting to their Wiley ways. I am tired. I am tired of adapting, but their survival depends on me, on us. I try the other tactics that worked with the others. Not a shred of improvement. Like even DURING the process. We've always been pretty good at creative discipline- punishment fitting the crime in unique ways. I have met my match in the stubborn department. Well played Karma, well played.<br />
<br />
Bella has a reason for everything. She is so smart. She does not know when to shut up and color. I assign her random tasks, Phil looks confused- like How in the f#@! does this help us- well IF she does it, it keeps her busy. Things like dismantling light up cups to replace batteries, only I have no intention of replacing batteries, those bad boys are going to good will...but a half an hour later, she's broken 2 cups and found a 3rd to be rusted through. No loss on my end. Explore, play, figure it out. Learn. We tried Tinker boxes- monthly subscriptions of activities- the problem is, she'd just do it, never look at instructions- but she learns through destructions.....keeping this in mind.<br />
<br />
When Kiera was little, Phil struggled to find common ground. As a military brat- he felt parent-child relationships went a certain way. And that's lesson 1 in parenting/life- rarely does anything go the way we envision it. Somewhere after the nasty 12 year point- they found they had the same sense of humor. Kiera would usually talk at dinner, (breakfast and lunch being her favorite meals) and all of a sudden they would be laughing through tears at something none of us got in the slightest. This was also around the time I got perma-cancer. Bella found attention through being quirky in the most inappropriate ways, Kiera took on the little mama role.<br />
<br />
For many years between when Bob and Dad died and hopping back in the cancer saddle, I felt the urgency. Because you just don't know if or when. Or what. Or why. The choice is: learn to live despite the gaping, burning heartache and threatening clouds or sit miserably waiting. My dad and brother died in relatively short order. There was much cancering in my family, my cousin dealt with it for years. Others had "littler" cancers, pretty regularly. I learned to adapt. For me, cancer mean swift end, not prolonged managing. I learned To live in the moment, to find the beauty whenever I could and to help others. Fill my karma punch card if you will. Leave an impression as a friend, as a wife, as a mother. When the kids were younger, it was so hard, but easier to justify. This was the biggest thing on my bucket list- being mom. I cooked, I cleaned, I sewed, I did social clubs, redecorated, saved, the whole shebang. When a friend was in need- I jumped to help. karma punch card. For many reasons. I knew the lonely pain and despair of loss. Friends don't let friends go through that alone. Being a military wife gave me a different opportunity on different levels. A group who understood the urgency of setting up a network and the heartache of goodbyes.<br />
<br />
I've said since the beginning- accept help when you can, because when you really need it, it may not be there. I said often, wait till I really need it. I've needed. Go to social events, or you will be forgotten. I stopped going. It happens. Reach out to others. If you've gotten this far, thank you. You are one of my tribe. I know you are there and even if we have chatted recently- send me a message however we usually chat- all it has to say is " yeah but holes". I tell myself Do not get bitter. When others who have more, get more. When the days are hard and others need more of you. At least if they need you, you are still relevant, right?<br />
<br />
Phil came home from work, questioning his relevance. Oh bud- we are all replaceable. Our hearts are not. Our memories are not. But we can build on them. He's worked his ass off despite a wife with stage IV cancer, 4 mini mutants, and well life- to make sure we have a home and healthcare. And usually he gets shit for it on my end, because I miss him, I miss feeling good, I miss the normalish life. This is the normalish life. He could have retired this year. But he is making sure all the bases are covered. He too wants to fix, help, be his best and leave the world better than he had it because it's hard-wired in him as a decent human. Our adaptation to the challenges may make them appear easier. Just as the cancer patient who dances through chemo and is beautiful despite being bald is revered. Sometimes we dance slower, there are days that even the best make-up can't cover the wear and tear BUT if adapt to the way it is, not the way you thought it could be- you could decorate the shit out of that yeah-but hole!<br />
<br />
<br />4monkeyshttp://www.blogger.com/profile/12770518256915325592noreply@blogger.com0tag:blogger.com,1999:blog-129030241525479145.post-62673149890135531752018-05-10T19:18:00.000-10:002018-05-10T19:18:29.073-10:00I've traveled, some.<br />
<br />
I've gotten an education.<br />
<br />
I've had my heart broken.<br />
<br />
I've been told I wasn't good enough.<br />
<br />
I've felt I wasn't good enough.<br />
<br />
Then I did better.<br />
<br />
Then I did more.<br />
<br />
I created 4 humans. 4. humans.<br />
<br />
I've kept them alive until now. NO small feat.<br />
<br />
I've given my heart to another and had it completely broken.<br />
<br />
I've had someone help me put the pieces together.<br />
<br />
I've put many pieces back myself.<br />
<br />
I've been told to just shove the pieces in, enough is enough.<br />
<br />
I've had many close friends who listened over and over while each piece was put back.<br />
<br />
I've done my best.<br />
<br />
I've learned sometimes your best just isn't good enough.<br />
<br />
And then I've had someone hug me so not only all the pieces stuck back together,<br />
<br />
And In that moment it was all good enough.<br />
<br />
More than that, it is the best.<br />
<br />
<br />4monkeyshttp://www.blogger.com/profile/12770518256915325592noreply@blogger.com0tag:blogger.com,1999:blog-129030241525479145.post-55785189994517056072018-05-07T11:21:00.001-10:002018-05-07T11:22:30.920-10:00April with Team Mallory<br /><br />I thought I'd do a quick picture update, then 150+ pictures...2 iphone slideshow failed attempts and a computer crash later- here we are. <div>
<br /></div>
<div>
April was amazing, busy, wonderful. I can not express how proud I am of my minis. From donating birthday money to St. Baldrick's, to Lily giving almost every class at school presentations on Childhood Cancer and the need to fund research, to the actual bald. Most days I feel like I'm failing miserably- then these bald heads remind me we are doing something right. We can't control circumstances, we can control how we respond to them. </div>
<div>
<br /></div>
<div>
I am humbled, honored and speechless at the tremendous support we've received this month. From donations, to fundraisers, to sharing all the posts, to wonderful t-shirts, lovingly made by friends(Snarky Cancer is the best), I so appreciate every little and BIG contribution to Team Mallory. I am so grateful for your friendship, love and time. Friends are family that you've chosen, thank you for choosing us. </div>
<div>
<br /></div>
<div>
Phil and I ventured to Toronto for a long weekend LFS conference. It was the most mutant bang for our buck! There were lots of friends, old friends, new friends, it did my heart good to reconnect in human form. There were so many people I needed to hug, repeatedly. So many who don't like to be touched, who put up with me. I was not on my normal scientific fangirl game, but it was so encouraging to see the LFS community together- hashing away at this mutant p53 problem. And there were so many pictures I didn't take, friends I didn't get to hug. Plans will be made to rectify this. ***Phil cringes and considers who will employ stage 4 cancer mom to finance this***</div>
<div>
<br /></div>
<div>
As for Phil. He is my lobstah. My best friend. It's been a long haul and he's always supported my need to be a professional volunteer. Which often means his being a professional volunteer and best friend, husband, dad status. None of this would be possible without him. Read that as you will....He is the best person I know. Now on to May- May the odds ever be in our favor!<br /><table bgcolor="#ffffff" border="0" cellpadding="0" cellspacing="0"><tbody>
<tr><td><a href="http://www.smilebox.com/play/4e44597a4d7a6b794d7a633d0d0a&blogview=true&campaign=blog_playback_link&partner=smileboxorg" target="_blank"><img alt="Click to play this Smilebox slideshow" height="330" src="https://www.smilebox.com/snap/4e44597a4d7a6b794d7a633d0d0a.jpg" style="border: medium none;" width="420" /></a></td></tr>
<tr><td><a href="http://www.smilebox.com/?partner=smileboxorg&campaign=blog_snapshot" target="_blank"><img alt="Create your own slideshow - Powered by Smilebox" height="46" src="https://www.smilebox.com/globalImages/blogInstructions/blogLogoSmilebox.gif" style="border: medium none;" width="420" /></a></td></tr>
<tr><td align="center"><a href="http://www.smilebox.com/anytime-slideshows.html?campaign=blog_playback_link&partner=smileboxorg" target="_blank">Free slideshow design</a> created with Smilebox</td></tr>
</tbody></table>
</div>
4monkeyshttp://www.blogger.com/profile/12770518256915325592noreply@blogger.com0tag:blogger.com,1999:blog-129030241525479145.post-17866073309534668032018-05-03T18:48:00.000-10:002018-05-08T18:53:32.020-10:00The Meaning of Mutant. I am a MUTANT. But guess what? So are YOU! neener neener neener.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://2.bp.blogspot.com/-7u2swPE46j0/WuvOvg945UI/AAAAAAAAC2Q/dRYZjDBv-5YMMrxvIS6WUqZW3nUWMNdBACLcBGAs/s1600/pink%2BHyHAM.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="154" data-original-width="146" src="https://2.bp.blogspot.com/-7u2swPE46j0/WuvOvg945UI/AAAAAAAAC2Q/dRYZjDBv-5YMMrxvIS6WUqZW3nUWMNdBACLcBGAs/s1600/pink%2BHyHAM.png" /></a></div>
<br />
<br />
<style type="text/css">
p.p1 {margin: 0.0px 0.0px 0.0px 0.0px; line-height: 28.0px; font: 24.0px Arial; color: #222222; -webkit-text-stroke: #222222; background-color: #ffffff}
p.p2 {margin: 0.0px 0.0px 0.0px 0.0px; line-height: 11.0px; font: 10.0px Arial; color: #222222; -webkit-text-stroke: #222222; background-color: #ffffff; min-height: 11.0px}
p.p3 {margin: 0.0px 0.0px 0.0px 0.0px; line-height: 11.0px; font: 13.0px Arial; color: #222222; -webkit-text-stroke: #222222; background-color: #ffffff}
p.p4 {margin: 0.0px 0.0px 0.0px 0.0px; line-height: 11.0px; font: 10.0px Arial; color: #222222; -webkit-text-stroke: #222222; background-color: #ffffff}
p.p5 {margin: 0.0px 0.0px 0.0px 0.0px; line-height: 11.0px; font: 10.0px Arial; color: #878787; -webkit-text-stroke: #878787; background-color: #ffffff; min-height: 11.0px}
p.p6 {margin: 0.0px 0.0px 0.0px 36.0px; text-indent: -36.0px; line-height: 11.0px; font: 10.0px Arial; color: #222222; -webkit-text-stroke: #222222; background-color: #ffffff}
p.p7 {margin: 0.0px 0.0px 0.0px 36.0px; text-indent: -36.0px; line-height: 11.0px; font: 10.0px Arial; color: #222222; -webkit-text-stroke: #222222; background-color: #ffffff; min-height: 11.0px}
p.p8 {margin: 0.0px 0.0px 0.0px 36.0px; text-indent: -36.0px; line-height: 11.0px; font: 12.0px Arial; color: #222222; -webkit-text-stroke: #222222; background-color: #ffffff}
p.p9 {margin: 0.0px 0.0px 0.0px 0.0px; line-height: 16.0px; font: 13.0px Helvetica; color: #1d2129; -webkit-text-stroke: #1d2129; background-color: #ffffff}
li.li10 {margin: 0.0px 0.0px 0.0px 0.0px; line-height: 16.0px; font: 13.0px Helvetica; color: #1d2129; -webkit-text-stroke: #1d2129}
span.s1 {font-kerning: none}
span.s2 {font-kerning: none; color: #878787; -webkit-text-stroke: 0px #878787}
span.s3 {font: 10.0px Arial; font-kerning: none}
span.s4 {font: 12.0px Arial; font-kerning: none}
span.s5 {font: 13.0px Arial; font-kerning: none}
span.s6 {font: 15.6px Helvetica}
span.s7 {font-kerning: none; background-color: #ffffff}
span.s8 {font: 13.0px 'Apple Color Emoji'; font-kerning: none; background-color: #ffffff}
span.s9 {font-kerning: none; color: #90949c; -webkit-text-stroke: 0px #90949c}
span.s10 {font-kerning: none; color: #365899; -webkit-text-stroke: 0px #365899}
span.Apple-tab-span {white-space:pre}
ul.ul1 {list-style-type: disc}
</style>
<br />
<div class="p1">
<span class="s1">mu·tant<span class="Apple-converted-space"> </span>ˈmyo͞otnt/</span></div>
<div class="p2">
<span class="s1"><i></i></span><br /></div>
<div class="p2">
<span class="s1"><i></i></span><br /></div>
<div class="p3">
<span class="s1"><b><i>dictionary.com</i></b></span></div>
<div class="p2">
<span class="s1"><i></i></span><br /></div>
<div class="p4">
<span class="s1"><i>adjective</i></span></div>
<div class="p5">
<span class="s1"></span><br /></div>
<div class="p6">
<span class="s1"><b><span class="Apple-tab-span"> </span>1.<span class="Apple-tab-span"> </span>1</b>.<br />
resulting from or showing the effect of mutation.</span><span class="s2"><br />
</span></div>
<div class="p4">
<span class="s1"><i>noun</i></span></div>
<div class="p5">
<span class="s1"></span><br /></div>
<div class="p6">
<span class="s1"><b><span class="Apple-tab-span"> </span>1.<span class="Apple-tab-span"> </span>1</b>.<br />
a mutant form.<br />
</span></div>
<div class="p7">
<span class="s1"></span><br /></div>
<div class="p8">
<span class="s1"><b>Merriam Webster</b></span><span class="s3"><b> </b>Dictionary</span></div>
<div class="p7">
<span class="s1"></span><br /></div>
<div class="p6">
<span class="s1">NOUN</span></div>
<div class="p7">
<span class="s1"></span><br /></div>
<div class="p6">
<span class="s1">: of, relating to, or produced by mutation</span></div>
<div class="p7">
<span class="s1"></span><br /></div>
<div class="p6">
<span class="s1"><br />
</span></div>
<div class="p6">
<span class="s4"><b>OXFORD</b></span><span class="s1"> Dictionary</span></div>
<div class="p7">
<span class="s1"></span><br /></div>
<div class="p6">
<span class="s1">ADJECTIVE</span></div>
<div class="p6">
<span class="s1"><span class="Apple-tab-span"> </span><br />
Resulting from or showing the effect of mutation.<br />
‘a mutant gene’</span></div>
<div class="p7">
<span class="s1"></span><br /></div>
<div class="p6">
<span class="s1">NOUN</span></div>
<div class="p7">
<span class="s1"></span><br /></div>
<div class="p6">
<span class="s1"><span class="Apple-tab-span"> </span><span class="Apple-tab-span"> </span>A mutant form.<br />
‘frequently only a small percentage of the offspring of mutants resemble their parents’</span></div>
<div class="p6">
<span class="s1"><br />
<br />
</span></div>
<div class="p6">
<span class="s5"><b>Cambridge</b></span><span class="s1"> Dictionary<br />
</span></div>
<div class="p6">
<span class="s1">NOUN</span></div>
<div class="p6">
<span class="s1">an organism that is different from others of its type because of a permanent change in its genes:</span></div>
<div class="p6">
<span class="s1"><i>These mutants lack a vital protein which gives them immunity to the disease.</i></span></div>
<div class="p6">
<span class="s1"><i>This mutant gene is thought to cause cancer.</i></span></div>
<div class="p6">
<span class="s1"><i>figurative humorous I'm convinced he's a mutant - he's not at all like the rest of our family!</i></span></div>
<div class="p7">
<span class="s1"></span><br /></div>
<div class="p6">
<span class="s1">disapproving an unpleasant and frightening thing:</span></div>
<div class="p6">
<span class="s1"><i>The result of these experiments will be a nightmarish world filled with two-headed monsters and other mutants.</i></span></div>
<div class="p7">
<span class="s1"></span><br /></div>
<div class="p7">
<span class="s1"></span><br /></div>
<div class="p7">
<span class="s1"></span><br /></div>
<div class="p7">
<span class="s1"></span><br /></div>
<div class="p7">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: small;"><span class="s1"></span>So. Well those are the definitions of mutant from, you know, reliable sources. Because I'm just Jen. Me. The culmination of my experiences(many "highly associated" with my mutation in the TP53 tumor suppressor gene). AKA- LFS- Li-Fraumeni Syndrome. </span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://4.bp.blogspot.com/-_R4XhmM3G00/WuvPG7Uj_II/AAAAAAAAC2g/3BkTjOE3uBgSyfmrwtumm4Sj0HGInk1WwCEwYBhgL/s1600/Tom%2Band%2BKath.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="909" data-original-width="714" height="320" src="https://4.bp.blogspot.com/-_R4XhmM3G00/WuvPG7Uj_II/AAAAAAAAC2g/3BkTjOE3uBgSyfmrwtumm4Sj0HGInk1WwCEwYBhgL/s320/Tom%2Band%2BKath.jpeg" width="251" /></a></div>
<div class="p7">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: small;"><br /></span></div>
<div class="p7">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: small;">My family deals with hardship through laughter. Dark. Morbid. Hysterical. It's an acquired taste. It took Phil awhile. Many of my close girlfriends are forever scarred(remember scars are BEAUTIFUL- they show the battles you've won) by interacting with my extended family. Those who choose to keep me around- well are now family. Friends are family you choose. My mutant family is my collection of weirdos who happen to share the same mutation and snarky need to swear, I mean live life to the fullest. </span></div>
<div class="p7">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: small;"><br /></span></div>
<div class="p7">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: small;">Words are precious. A single word can change the meaning of a sentence, the light in someone's dreams, how you perceive the world. Words like: cancer, scars, mutant. </span></div>
<div class="p7">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: small;">You have: CANCER. Your scars are HORRIBLE. I AM A MUTANT!</span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://4.bp.blogspot.com/-VPr03ZXC4aA/WuvPJhSDcNI/AAAAAAAAC2k/09fKku5pFSk7rGLlx-RSDhAwK1i9l1w3ACEwYBhgL/s1600/Phillip%2Bn%2BBella%2BHYHAM-2.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1197" height="320" src="https://4.bp.blogspot.com/-VPr03ZXC4aA/WuvPJhSDcNI/AAAAAAAAC2k/09fKku5pFSk7rGLlx-RSDhAwK1i9l1w3ACEwYBhgL/s320/Phillip%2Bn%2BBella%2BHYHAM-2.jpeg" width="239" /></a></div>
<div class="p7">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: small;"><br /></span></div>
<div class="p7">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: small;">Newsflash- we are all mutants. Our DNA mutates over time to adapt to changes. Not all mutations are BAD. SO declaring I AM MUTANT, HEAR ME ROAR- is kinda like saying- hey check it out, the sky is blue. When your precious offspring toddles over and asks you WHY the sky is blue- well that's where shit gets real. My kids are not offended by the word, but I am also kinda shocked by what does or doesn't offend kids these days. Get off my lawn???</span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://4.bp.blogspot.com/-gAOpm9qhy98/WuvjPMsMYJI/AAAAAAAAC3Q/xy3Mya68_cgvQbEkAzKin0_82uzmnLaIwCLcBGAs/s1600/IMG_8727.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="556" data-original-width="1232" height="144" src="https://4.bp.blogspot.com/-gAOpm9qhy98/WuvjPMsMYJI/AAAAAAAAC3Q/xy3Mya68_cgvQbEkAzKin0_82uzmnLaIwCLcBGAs/s320/IMG_8727.jpg" width="320" /></a></div>
<div class="p7">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: small;"><br /></span></div>
<div class="p7">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: small;"><br /></span></div>
<div class="p7">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: small;">There are many many many mutations. Caused by many many many things. Not all are bad. Some are very very bad and contraindicated for this whole living thing we seem to enjoy- mostly. There are so so so many p53 mutations. There are so so so many OTHER mutations. We cannot predict the pattern of cancer or if these superior(in my opinion) mutants, will get cancer at all. The data pretty much says we will. I used to crave data. Now I say fuck it- I am not a number. BUT- do not interpret this to mean data collection is not important- because it IS. Research is so very important. Yet so many times, the researchers find solutions in the rare- the zebras, the unicorns. We are the rare of cancers. Half of all cancers have p53 mutations. We just happen to have one of these mutations in ALL of our cells. We are the key to solving over HALF of the cancer riddle. If we can LIVE long enough to get there. We are living LFS. </span></div>
<div class="p7">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: small;"><br /></span></div>
<div class="p7">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: small;">There has been some dissent over the use of MUTANT. Someone compared it to using the N-word. As the less spectacular and whiter half of an interracial relationship providing interracial offspring- I cannot even go there. Because guess what- when I type-<i> N-word,</i> you know what word I mean. Now if I call a human that word- well that's rude and awful and despicable and sets decency back decades. Now if Oprah, Jay-Z, or Kevin Hart use the N word, well that is up to them. I can't get my kids to do dishes- I cannot possibly solve an issue like this in my blog. BUT that being said- no comparison- a lively band of mutants to generations of oppression. It's a word. You can or cannot use it to identify yourself if you feel it may or may not identify you. I've found that the merry band of mutants who identify with this M- word are my tribe. Their approach to cancering and life in general are very similar to mine. </span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://1.bp.blogspot.com/-itEChA5R9QU/WuvfKVrtbNI/AAAAAAAAC3I/UtWdhh5gJ3YpZfYUounnlr4hSsInztMOQCEwYBhgL/s1600/IMG_8352.JPG" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://1.bp.blogspot.com/-itEChA5R9QU/WuvfKVrtbNI/AAAAAAAAC3I/UtWdhh5gJ3YpZfYUounnlr4hSsInztMOQCEwYBhgL/s320/IMG_8352.JPG" width="240" /></a></div>
<div class="p7">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: small;"><br /></span></div>
<div class="p7">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: small;"><br /></span></div>
<div class="p7">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: small;">So- I polled my mutant friends and non p53 mutant friends on their associations of the word MUTANT. Mind you- I am an acquired taste and this is completely absolutely and totally biased. These are my people. And this is their voice. Words are what they mean to you. If they are empowering, embrace them. If they offend some, respect that. But always, always, always BE YOU. Mutations and all. </span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://4.bp.blogspot.com/-q1ki_QGQNQg/WuvdCXwTW7I/AAAAAAAAC28/9GVcTkxHwLUyC5iEIunExbv8h9JpqouXwCEwYBhgL/s1600/TMNT%2BHYHAM.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="960" height="240" src="https://4.bp.blogspot.com/-q1ki_QGQNQg/WuvdCXwTW7I/AAAAAAAAC28/9GVcTkxHwLUyC5iEIunExbv8h9JpqouXwCEwYBhgL/s320/TMNT%2BHYHAM.jpg" width="320" /></a></div>
<div class="p7">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: small;"><br /></span></div>
<div class="p7">
<span style="font-family: Arial, Helvetica, sans-serif; font-size: small;"><br /></span></div>
<div class="p7">
<span style="font-size: x-small;"><b>What does the word MUTANT mean to you? </b></span></div>
<div class="p7">
<br /></div>
<div class="p7">
<i><span class="s1"></span><br /></i></div>
<div class="p9">
<span class="s1"><i>- <span class="Apple-converted-space"> </span>Super awesome</i></span></div>
<ul class="ul1">
<li class="li10"><i><span class="s6"></span><span class="s7">PURE FUCKING AWESOME BADASSNESS!!!!</span></i></li>
<li class="li10"><i><span class="s6"></span><span class="s7">A family that I love and adore</span></i></li>
<li class="li10"><i><span class="s6"></span><span class="s7">Not wild type</span></i></li>
<li class="li10"><i><span class="s6"></span><span class="s7">Containing novel genetic information not inherited from parents</span></i></li>
<li class="li10"><i><span class="s6"></span><span class="s7">The X-men<span class="Apple-converted-space"> </span>x 10</span></i></li>
<li class="li10"><i><span class="s6"></span><span class="s7">someone who has a mutation</span></i></li>
<li class="li10"><i><span class="s6"></span><span class="s7">Pure love</span></i></li>
<li class="li10"><i><span class="s6"></span><span class="s7">Baddest form of badassery ever.<span class="Apple-converted-space"> </span></span></i></li>
<li class="li10"><i><span class="s6"></span><span class="s7">I am of course familiar with the word (Teenager Mutant Ninja Turtles!!). I guess I would say it is a being (animal, human) that has developed abnormally as a result of an external influence. But I don't think I have ever used the word. It seems like a very 80s word used in fiction.</span></i></li>
<li class="li10"><i><span class="s6"></span><span class="s7">I am in a family of mutants so family reunion to me.</span></i></li>
<li class="li10"><i><span class="s6"></span><span class="s7">Love</span></i></li>
<li class="li10"><i><span class="s6"></span><span class="s7">Before i used to think X Men </span><span class="s8">😂</span><span class="s7">... now I think mutant means some of the kindest, most compassionate, loving, admirable people I’ve ever met! Beautiful souls that’s what it means </span><span class="s8">❤️</span></i></li>
<li class="li10"><i><span class="s6"></span><span class="s7">Inner Strength, resilience, friendship and understanding</span></i></li>
<li class="li10"><i><span class="s6"></span><span class="s7">Dont want to crush into your positive vibes. Anyway...most time being a mutant means separation for me, and loneliness. The 10 Minutes a day virtually in Facebook for sure make a difference! But in real life, it makes me feel very lonely...</span></i></li>
<li class="li10"><i><span class="s6"></span><span class="s7">Teenage Mutant Ninja Turtles</span></i></li>
<li class="li10"><i><span class="s6"></span><span class="s7">I kind of think of "mutant" as normal, but the word tends to shock people. It's more acceptable to discuss genetic abnormalities by saying, "I have this mutation," rather than to say, "I am a mutant." Maybe it just sounds kind of aggressive or attention-seeking - something people say for the shock or laugh value? Mutation happens all the time, and I would guess that most people have at least some form of genetic mutation. I know I do... <a href="https://www.facebook.com/hashtag/prothrombingenemutation?hc_location=ufi"><span class="s9">#</span><span class="s10">ProthrombinGeneMutation</span></a></span></i></li>
<li class="li10"><i><span class="s6"></span><span class="s7">Courageous badass super hero</span></i></li>
<li class="li10"><i><span class="s6"></span><span class="s7">The key to the future of humanity </span></i></li>
<li class="li10"><i><span class="s6"></span><span class="s7">Friendship, connections, scans, fear, love, science, hopefully awesome super powers!</span></i></li>
<li class="li10"><i><span class="s6"></span><span class="s7">A tribe trying to withstand this p53 mutation shit storm through love, friendship and a little humor.</span></i></li>
</ul>
<div>
<span style="color: #1d2129; font-family: Helvetica;"><span style="-webkit-text-stroke-color: rgb(29, 33, 41); font-size: 13px;"><i><br /></i></span></span></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://3.bp.blogspot.com/-gVqAAsteOYs/WuvPckARCCI/AAAAAAAAC2s/p3_3J_zWnbIrMGGYyZyoLYVKUy2ivjAlQCEwYBhgL/s1600/purple%2Bhyham.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="189" data-original-width="228" src="https://3.bp.blogspot.com/-gVqAAsteOYs/WuvPckARCCI/AAAAAAAAC2s/p3_3J_zWnbIrMGGYyZyoLYVKUy2ivjAlQCEwYBhgL/s1600/purple%2Bhyham.png" /></a></div>
<div>
<span style="color: #1d2129; font-family: Helvetica;"><span style="-webkit-text-stroke-color: rgb(29, 33, 41); font-size: 13px;"><i><br /></i></span></span></div>
<br />4monkeyshttp://www.blogger.com/profile/12770518256915325592noreply@blogger.com0tag:blogger.com,1999:blog-129030241525479145.post-51263950021932916282018-04-11T12:30:00.000-10:002018-04-11T12:30:05.679-10:00InvestmentsWhen Phil and I got married and had Phillip, we didn't have a lot. We had love and family. Generous family that helped us get settled, gave us what they could and friends that became family and showed us the ropes. We agreed I would work if I could, if I wanted to. Mostly I am a career mom. I've had a job here and there, most of my "work" is entirely volunteer. I invest in the things I am passionate about. I am most passionate about my children.<br />
<br />
I invest in the future.<br />
<br />
There are days my investments may kill me.<br />
<br />
There are days my investments make me cry. sad tears. happy tears. tears of agony. tears of pride.<br />
<br />
My investments are expensive.<br />
<br />
I have no idea what the interest rate is on my investments. So far it seems variable.<br />
<br />
My investments are stressful.<br />
<br />
My investments are helpful.<br />
<br />
My investments have unlimited potential, they just have to realize it.<br />
<br />
I have put so much into my investments, I wonder how I have anything left to share.<br />
<br />
When I feel depleted. I remember my investments.<br />
<br />
Sometimes I get lucky with investments.<br />
<br />
Sometimes I have to rely on luck to get me through my investments.<br />
<br />
Sometimes I wonder how I could be so lucky.<br />
<br />
My investments are ALWAYS worth it.<br />
<br />
There are times I ignore my investments. Let them accrue. Let them diversify.<br />
<br />
At times my investments are volatile. It is then I rely most on mutual funds.<br />
<br />
Investments are more than fiduciary duty or yields. It is about bonds.<br />
<br />
Investments are my best assets.<br />
<br />
Most days, through the daily trudge, I don't give a lot of thought to my investments. We have our routine, I tend to daily needs. I forget to look at the big picture, like anyone else. There are sometimes I just want to be free of my investments. Take a vacation. Then I remember that my investments are my future. They are the future. They are the best and sometimes the worst of me.<br />
<br />
My children are the best investments I have ever made.<br />
<br />
<br />4monkeyshttp://www.blogger.com/profile/12770518256915325592noreply@blogger.com0tag:blogger.com,1999:blog-129030241525479145.post-6346033330819776882018-03-28T19:37:00.001-10:002018-04-11T11:27:03.627-10:00Team Mallory Takes on St. Baldrick's<div class="separator" style="clear: both; text-align: center;">
<a href="https://2.bp.blogspot.com/-J_qlHc3RbkQ/Wrx3J3vwoYI/AAAAAAAAC10/jgH_DgSNKz8Op_GZ60p5OvB-dwALbjTWwCEwYBhgL/s1600/IMG_7579.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="650" data-original-width="1600" height="130" src="https://2.bp.blogspot.com/-J_qlHc3RbkQ/Wrx3J3vwoYI/AAAAAAAAC10/jgH_DgSNKz8Op_GZ60p5OvB-dwALbjTWwCEwYBhgL/s320/IMG_7579.jpg" width="320" /></a></div>
<br />
There is that spot in my heart that aches when I think of what Lily went through druring chemo. It leaves marks that aren't polite to talk about at parties, but They are there, always. I think of what we all went through. The unknowns. The fear of losing her. The helplessness. The gracious help from family and friends. We were learning more details about Li-Fraumeni Syndrome, a risk we all carry. I had only met a couple others online at this point who "got it". The Ramers just lost their son Brent last year, after YEARS of cancering. And our hearts hurt. This shouldn't happen. Organizations like St. Baldrick's are making a difference.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://3.bp.blogspot.com/-G1MOIS6J1H8/SZriZAAMJPI/AAAAAAAAAZc/gQxg6FTHDaAle5Or3T6T57B8G3jaYkPLwCPcBGAYYCw/s1600/zoo%2B034.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1200" height="200" src="https://3.bp.blogspot.com/-G1MOIS6J1H8/SZriZAAMJPI/AAAAAAAAAZc/gQxg6FTHDaAle5Or3T6T57B8G3jaYkPLwCPcBGAYYCw/s200/zoo%2B034.JPG" width="150" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Oh monkey. </td></tr>
</tbody></table>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-Kel-7xdFxcw/SaYVgIwxnPI/AAAAAAAAAZ8/VBW1zmseBqwquVSXfOImJHX1PLfHPrmmQCPcBGAYYCw/s1600/011.JPG" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1162" data-original-width="1521" height="152" src="https://4.bp.blogspot.com/-Kel-7xdFxcw/SaYVgIwxnPI/AAAAAAAAAZ8/VBW1zmseBqwquVSXfOImJHX1PLfHPrmmQCPcBGAYYCw/s200/011.JPG" width="200" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Bella Boo- by Lily's side most of chemo</td></tr>
</tbody></table>
<br />
<br />
<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-f515iXsvOxQ/SYXcxKHJa9I/AAAAAAAAAW0/cI17hI4wnpA7-yOqeK0ERC6gFf8nfFsgwCPcBGAYYCw/s1600/p%2Bn%2Blil%2Bby%2Belephant.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1183" height="200" src="https://2.bp.blogspot.com/-f515iXsvOxQ/SYXcxKHJa9I/AAAAAAAAAW0/cI17hI4wnpA7-yOqeK0ERC6gFf8nfFsgwCPcBGAYYCw/s200/p%2Bn%2Blil%2Bby%2Belephant.jpg" width="147" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Phillip and Lily's special bond and ELEPHANT!!</td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-46tuB6L-BFA/SbSO4KsSWuI/AAAAAAAAAcA/5-94cHCbw7QKnS3MG2emVKNp5EUKV_3cACPcBGAYYCw/s1600/199th%2Bfamily%2Bday%2B003.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1283" height="200" src="https://1.bp.blogspot.com/-46tuB6L-BFA/SbSO4KsSWuI/AAAAAAAAAcA/5-94cHCbw7QKnS3MG2emVKNp5EUKV_3cACPcBGAYYCw/s200/199th%2Bfamily%2Bday%2B003.JPG" width="160" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">sisters. first. forever. </td></tr>
</tbody></table>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-KlNF8aVN3Hc/ScvaxEjoR4I/AAAAAAAAAgA/URt_ijlGKeIDMKgVFwnwCjBNC7LqE_t-gCPcBGAYYCw/s1600/water%2Bwars%2B09%2B004.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://4.bp.blogspot.com/-KlNF8aVN3Hc/ScvaxEjoR4I/AAAAAAAAAgA/URt_ijlGKeIDMKgVFwnwCjBNC7LqE_t-gCPcBGAYYCw/s320/water%2Bwars%2B09%2B004.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is how we feel about Childhood cancer. </td></tr>
</tbody></table>
SO in 2014, when Lily said she wanted to shave her curls, well that achey spot lit on fire. By now- I had a mutant posse of friends- each one fighting cancer in their own hell. Ah LFS- we got 53 problems but obviously a tumor suppressor ain't one of them. I had a tight knit group of sistahs, who became my life line as I navigated chemo for the first time. We told our kids about their kids. The Ramers(aka Ramernation) were going through the delights of everything LFS had to throw at them- multiple cancers in multiple children and NO clear path. Their momma Ann is one of few who I would go to to clarify science questions- she knew it all and if she didn't she'd find out. Somewhere in the middle of all of it, we formed <a href="http://www.livinglfs.org/" target="_blank">living LFS</a>, because we didn't want other families to be without the support we had found. She is one of the fiercest advocates I have ever met.<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-dzEnc8Ib3Sk/VEcdBJntELI/AAAAAAAABu0/K84PaQ4sNFku4ZUKtZ0v11ZdQ7Z9eJJSACPcBGAYYCw/s1600/DSC06608.JPG" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1064" data-original-width="1600" height="212" src="https://4.bp.blogspot.com/-dzEnc8Ib3Sk/VEcdBJntELI/AAAAAAAABu0/K84PaQ4sNFku4ZUKtZ0v11ZdQ7Z9eJJSACPcBGAYYCw/s320/DSC06608.JPG" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Living LFS mutant sistahs. </td></tr>
</tbody></table>
<br />
<br />
When Lily shaved her head for St. Baldrick's the first time- all those burning spots of PTSD flared up but mostly we all became empowered to see her - her strength. I was extremely honored that she wanted to honor me, but I have had a beautiful life. My heart aches for our little warriors, through no fault of their own, have their years cut short by cancer.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://2.bp.blogspot.com/-eUntP-gl5es/Vt71PmaXgSI/AAAAAAAACKE/h62hFt-oODkZF1nYqGKXH5E4KiXjEl7SQCPcBGAYYCw/s1600/Lily%2BSt.%2BBaldricks%2Bcopy.jpeg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1600" data-original-width="1581" height="320" src="https://2.bp.blogspot.com/-eUntP-gl5es/Vt71PmaXgSI/AAAAAAAACKE/h62hFt-oODkZF1nYqGKXH5E4KiXjEl7SQCPcBGAYYCw/s320/Lily%2BSt.%2BBaldricks%2Bcopy.jpeg" width="316" /></a></div>
<a href="https://www.blogger.com/goog_1642380889"></a><br />
<a href="https://www.blogger.com/goog_1642380889"></a>
<a href="https://lilykaymonkey.blogspot.com/2014/04/finding-something-she-can-do.html">https://lilykaymonkey.blogspot.com/2014/04/finding-something-she-can-do.html</a><br />
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
I don't always trust odds, numbers, risks. They are guidelines. There is just so much we don't know- so much just plain old LUCK. No one wants to beat cancer more than someone else- we don't want cancer to win. Yet as we wait yearly for scans, we try to make healthy choices, we try to live. We check in with our LFS friends - Brent and Lauren Ramer who seemed to be wholloped with one rare unicorn cancer or condition after another. The entire time we've known Brent, he'd been in chemo or dealing with a new cancer. Lauren has tumors pop up, they deal, and just keep living, she just finished chemo to have yet another tumor removed. . The odds are an analysis after the fact. We try to make a difference by sharing our stories, our experiences. Maybe one of our weirdisms will help someone else. If not, then there is research. Organizations like St. Baldrick's who fund severely under funded childhood cancer research and treatment protocols.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://3.bp.blogspot.com/-jResG60LcHM/Vu2eYaB_U-I/AAAAAAAACLs/L4cn3UeWyPQKiSfNjirBqwMxJT-Tk1QvgCPcBGAYYCw/s1600/Lily%2BstB%2Bposter.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="720" data-original-width="960" height="240" src="https://3.bp.blogspot.com/-jResG60LcHM/Vu2eYaB_U-I/AAAAAAAACLs/L4cn3UeWyPQKiSfNjirBqwMxJT-Tk1QvgCPcBGAYYCw/s320/Lily%2BstB%2Bposter.jpg" width="320" /></a></div>
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />
<a href="https://www.stbaldricks.org/blog/post/the-girl-who-beat-the-odds-lilys-story">https://www.stbaldricks.org/blog/post/the-girl-who-beat-the-odds-lilys-story</a><br />
<br />
<br />
In 2016, I had just been diagnosed with brain metastasis. The clock ticked loudly. We hunkered down. Just like Phil had the overwhelming need to take Lily to football games and disney, we needed to go to Europe. We never had a honeymoon, we are always day to day. That trip gave us so many memories and completely recharged us. We facetimed Lily fo her shave. It was not about me- it was about her doing what she could to help. She lost friends too, Haley, Abriana, Elikia. So many more were still fighting cancer, like Brent. Years of chemo and fighting and nonstop cancering. living cancer LFS style. but kicking ass and taking names- Chuck Norris style.<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-bObvtYZDLKk/WrxvSHdJi2I/AAAAAAAAC1Q/qiuxAEOs8YcCY0xBFOk8fnqCMe-cCJocwCLcBGAs/s1600/29196188_1717853828278393_3334107430266077184_o.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1600" data-original-width="1067" height="320" src="https://1.bp.blogspot.com/-bObvtYZDLKk/WrxvSHdJi2I/AAAAAAAAC1Q/qiuxAEOs8YcCY0xBFOk8fnqCMe-cCJocwCLcBGAs/s320/29196188_1717853828278393_3334107430266077184_o.jpg" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Lily rocking it after shave 2.<br />
Photo credit:Debbie Leanne. </td></tr>
</tbody></table>
<br />
<a href="http://lilykaymonkey.blogspot.com/2016/03/lilys-second-shave-for-brave-st.html">http://lilykaymonkey.blogspot.com/2016/03/lilys-second-shave-for-brave-st.html</a><br />
<br />
So here we are - 2018. Lily signs up for her 3rd Shave. Not phased that she's now 13, that middle school crowd is kinda tough. Yet she is a force to be reckoned with. The little ginger haired toddler who napped almost exclusively in hospital rooms, is now almost a teen and last week says- <i>I'm gonna shave for St. Baldrick's! </i>Ok, why. <i>For L</i>ily. Ok then. <i>We can all shave</i>. Ok, see if Phillip and Kiera will. And of course when the youngest asks- the eldest teens say- yeah- that's a great idea and it suddenly becomes a competition as to who can raise the most money. They all set up their own pages and have told their friends. I had many many happy proud tears and big hugs of my mini mutants.<br />
<br />
So I realize we ask a lot for help with fundraising. I appreciate our friends' and family's generosity. If this is a cause near to your heart- please pick a monkey and donate. If you can't decide, we've all agreed that Lily can be the default! All money goes to St. Baldricks!If you would be so kind as to share this blog, any of the kids' pages wide and far-we'd appreciate it! If you would like to join us (no shaving required) the event is April 22, 2018. If you'd like to hire out kids to do cleaning or lawn work or whatnot for donation- Mallory kids are at the ready. Bella already is helping make leis for me to earn $ for the shave.<br />
<br />
Thank You for continuing to support Team Mallory and our Many Adventures, Especially adventures that Fight Childhood Cancer!<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<img border="0" data-original-height="1294" data-original-width="1132" height="320" src="https://4.bp.blogspot.com/-wX8uhdf8g4s/Wrx3G_8-HAI/AAAAAAAAC1k/7KcinJ36MxAsCG3tlWOFcFNCJxFoUeDLQCLcBGAs/s320/IMG_7563.jpg" width="279" /></div>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://www.stbaldricks.org/participants/mypage/940469/2018" target="_blank"><span style="font-size: large;">Lily's Page</span></a></div>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://2.bp.blogspot.com/-B85zfA4V-oY/Wrx3HoIQxPI/AAAAAAAAC1s/qmt1rWvdr_gjEmYF82VYAAwEUjwemIWogCLcBGAs/s1600/IMG_7566.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1282" data-original-width="1094" height="320" src="https://2.bp.blogspot.com/-B85zfA4V-oY/Wrx3HoIQxPI/AAAAAAAAC1s/qmt1rWvdr_gjEmYF82VYAAwEUjwemIWogCLcBGAs/s320/IMG_7566.jpg" width="273" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: large;"><a href="https://www.stbaldricks.org/participants/mypage/967754/2018" target="_blank">Bella's Page</a></span></td></tr>
</tbody></table>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://4.bp.blogspot.com/-7JRw9wbaX3w/Wrx3G29cFiI/AAAAAAAAC1o/wlPfwExDai0JSuni3-6rIG_nmCrsXJ4DQCLcBGAs/s1600/IMG_7564.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1265" data-original-width="1183" height="320" src="https://4.bp.blogspot.com/-7JRw9wbaX3w/Wrx3G29cFiI/AAAAAAAAC1o/wlPfwExDai0JSuni3-6rIG_nmCrsXJ4DQCLcBGAs/s320/IMG_7564.jpg" width="299" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><div class="" style="clear: both;">
<a href="https://www.stbaldricks.org/participants/mypage/979944/2018" target="_blank"><br class="Apple-interchange-newline" /><span style="font-size: large;">Phillip's Page</span></a></div>
<div style="font-size: medium; text-align: start;">
<br /></div>
</td></tr>
</tbody></table>
<div class="separator" style="clear: both; text-align: center;">
<a href="https://4.bp.blogspot.com/-VzcDjanvneE/Wrx3IJdrqkI/AAAAAAAAC1w/2uKmg29-FVsDQb5dzSct4h04x7D2mCBJQCLcBGAs/s1600/IMG_7567%2B2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" data-original-height="1286" data-original-width="1165" height="320" src="https://4.bp.blogspot.com/-VzcDjanvneE/Wrx3IJdrqkI/AAAAAAAAC1w/2uKmg29-FVsDQb5dzSct4h04x7D2mCBJQCLcBGAs/s320/IMG_7567%2B2.jpg" width="289" /></a></div>
<div class="" style="clear: both; text-align: center;">
<a href="https://www.blogger.com/goog_1642380999"><br /></a></div>
<div class="" style="clear: both; text-align: center;">
<a href="https://www.stbaldricks.org/teams/mypage/115768/2018" target="_blank"><span style="font-size: large;">Kiera's Page</span></a></div>
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: left; margin-right: 1em; text-align: left;"><tbody>
<tr><td style="text-align: center;"><a href="https://1.bp.blogspot.com/-ChwqKL3MKMQ/Wrx3G1VETJI/AAAAAAAAC1g/zRHcQOxiSkkMLCy2NrxSesOz2QgcKJRwQCLcBGAs/s1600/IMG_7565.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" data-original-height="1270" data-original-width="1184" height="320" src="https://1.bp.blogspot.com/-ChwqKL3MKMQ/Wrx3G1VETJI/AAAAAAAAC1g/zRHcQOxiSkkMLCy2NrxSesOz2QgcKJRwQCLcBGAs/s320/IMG_7565.jpg" width="298" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><a href="https://www.stbaldricks.org/participants/mypage/979707/2018" target="_blank"><span style="font-size: large;">Jen's Page</span></a></td></tr>
</tbody></table>
<div class="" style="clear: both; text-align: center;">
<br /></div>
<div class="" style="clear: both; text-align: center;">
<br /></div>
<div class="separator" style="clear: both; text-align: center;">
<br /></div>
<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<br />4monkeyshttp://www.blogger.com/profile/12770518256915325592noreply@blogger.com0tag:blogger.com,1999:blog-129030241525479145.post-17090836883502300492018-03-12T21:50:00.000-10:002018-03-12T21:50:37.955-10:00Cycles. I have 3 girls.<br />
<br />
Enough said.<br />
<br />
Karma. Payback. I was NOT that tough a kid. THREE girls.<br />
<br />
Phil is oldest of 6 boys. One sister. This karma is on him. And where is he? Bali.<br />
<br />
I'm actually happy for him. He keeps sending me these glorious pictures of seafood(gag.) and beautiful scenery. Ambassador, goodwill, whatever the mission- he's earned some good food and star treatment. For the love of God- he works 3 jobs(he would disagree- but, well seriously) and takes care of <b>US. </b><br />
<br />
I'm still trying to get a handle on my "cycles". The girls are still getting a handle on theirs. Bella technically does not have one yet. Hell, I don't have a uterus or ovaries- but apparently we are all in this together. Dobby ate a quarter stick of butter today- I guess we'll see how it goes.<br />
<br />
We are all just trying to find our way through this crazy thing called life. We are living. It's messy. It's hard. And it is fucking beautiful. Sometimes I cry uncontrollably. Sometimes I laugh. I text friends, I drink. Sometimes it's tea. Sometimes it's vodka. What else can you do? The ups. The downs. The cycles.<br />
<br />
I'm trying 4 week cycles of chemo instead of 3 week cycles. Literature says....standard of care says... well, we are used to going off map. My platelets held steady this month. That's good. My onc is concerned about the bone mets- scans are ordered- fingers crossed. Haven't taken a gander at the ol brain in awhile. Need to do that. I get a couple more good days each cycle now. That is good. One shark at a time.<br />
<br />
Kiera has a stress reaction- aka-almost break, could someday be a break-aka owie on her spine. Most likely from her competitive lil self (despite adamancy that she does not want to compete..)contorting herself in all kinds of ballerina craziness. She is resting from dance and healing. It breaks my heart. It's not huge, but she is such a beautiful dancer. She will find her zen. I have no doubt. She reminds me so much of me sometimes and god damn it I want better for her. She asks to stay home from school more often. Mom and I used to call them me days- then mental health days. My counselor friend says it's ok- one a month is reasonable. Kiera's now coincide with my tough weeks. It's her way of helping. I love it. I HATE it. Don't get me wrong- it's not all bad- just the growing pains. She's got to do it. For both of us. I want her to fly. She will.<br />
<br />
Phillip has a brain. Seriously- he's 18- we were all kinda wondering. Research says something about male brain formation not complete until 25- IF. I . HEAR. THAT. ONE. MORE. TIME. I might form a brain and develop it up someone's... well anyhoow. He has a cyst- it's been there- and another one resolved- yeah us...and a smattering of lymphnodes that aren't concerning, but we will check on, because well we are tumorific. Hopefully its just allergies and well gross teen boy crap. I honestly love our mornings together. I missed him so much last year. He will do great things. He needs to take care of himself as much as he takes care of his friends...that sounds familiar. He just has to trust himself. He's got the wings, he just has to focus on using them. He will.<br />
<br />
Lily. Almost 13. THIRTEEN!!! I can not, NOT cry just thinking about it. It could have gone so many different ways. It hasn't been easy. BUT it is ALWAYS worth it. It's not perfect. We are not perfect. But she is HOPE. She is my hope. She is my strength. She drives me out of my ever loving mind. I would not have it any other way. Before Lily, I did not know living with cancer. Cancer came, ravaged and left me to carry on, living after cancer. Well sort of, kind of. Each time is so different. I am thankful. For her spirit, the reminder. To Persist. To appreciate. To pray, even just for a little luck. She is my luck and I wish nothing but good luck for her. She can do so much. The glass ceiling- breakable. She will.<br />
<br />
Oh dear Bella. I love her. May strangle her. God may not give us more than we can handle- well we are certainly testing boundaries with this one. I just think- if she was my first, second or third child- I would be at a complete loss. As the youngest- well- life. Cycles. Humans. Luck. She's gonna move mountains in the most random hysterical way. Or if it's easier to just fly over them. She will.<br />
<br />
Parenting- not for the weak. I may post the smiles and the good, we have our fair share of ugly. Everyone does. Marriage. Wow. And I married my best friend. The person I love more than anyone. The person I like more than anyone. Most days. Hell- tried to reproduce and carry on the gene pool. Need a few more floaties- but we keep swimming. Genes and humans- not perfect. Quite frankly a big hot mutated mess. Yet we love, we live, we pass on the cycle. Always trying to leave it a little better and prettier than we got it. Nailed it. Mic drop. *<br />
<br />
*"better" and "prettier" are entirely subjective. Still nailed it.<br />
<br />
<br />
<br />
<br />4monkeyshttp://www.blogger.com/profile/12770518256915325592noreply@blogger.com1