Not Ok. Waiting for Rebirth of OK.

On the scale of fine to not ok. NOT OK. 

Not REMOTELY OK.

I KNOW NO ONE IS OK right now. 

It doesn't help to compare, compete, or criticize in this stage of the quarantine. or cancering. or living.

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. 

When both cars decide to give you grief. 

Stream of conscious update inspired by Digable Planets: Rebirth of Slick (Cool like dat.)

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.

My morning view.

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.

After work, work call.

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. 

You wanna sit here?

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

One of our drives.

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.

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.

excuse crappy editing...

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.

Look out Bob Ross.

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. 

Gary's inpatient room. 

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,

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. 

Cancer in the time of Covid-19

Do 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?

How it feels.

This article inspired me to update:

Why people with cancer are my guides during a global pandemic.

KEEP PERSPECTIVE-EVEN IF IT IS DELERIOUSLY INAPPROPRIATE. MAYBE JUST KEEP IT TO YOURSELF. 

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.

DON'T DIE IF YOU CAN HELP IT

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. 

HAVING A TARGET ON YOUR BACK SUCKS- GO LIVE ANYWAYS

It seems to affect elderly and at risk most severely. 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. 

February 27- "yesterday" is Feb 26.  Does this scan make me look fat?

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.

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 think she's in shock. They were expecting a grand reaction and I let them down. Dr. K nods knowingly, she doesn't believe it. I want to. I really do. I kinda wanna go wash my hands. I look to Phil and back. I am speechless. 

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...) 

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.

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.

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.

ACCEPT THE GOOD LUCK, ROLL WITH THE BAD. 

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.

HELP IS A TWO WAY STREET. LOOK BEFORE YOU CROSS. 

 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: Please keep safe for you and your family. You are needed.  You are too.

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. 

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. 

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.

check out snarkycancer.com for all kinds of t's and snark. 

Mutiny Abound, Abscess Much?

 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.

The "chipcheek".

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.

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.

For those who take special care, it makes a difference. 

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.

Ewww.

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. 

Be Brave from Snarky Cancer.

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. 

Life 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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

A Force to be Reckoned With- A New Cycle

Like 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.

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.

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?

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.

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.

House elf and the child.

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.

days like this some are

 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.

backpack, baby yoda, 3D baby Yoda

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.

Bounty Hunter

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. 

Tiny expensive bag o cell killin abraxane.

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.

funny how an antibody is less anti-body and more targeted...Avastin.

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. 

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.

chomp chomp chomp

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. 

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. 

Losing My Voice

Phil 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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.