Thursday, May 10, 2018

I've traveled, some.

I've gotten an education.

I've had my heart broken.

I've been told I wasn't good enough.

I've felt I wasn't good enough.

Then I did better.

Then I did more.

I created 4 humans. 4. humans.

I've kept them alive until now. NO small feat.

I've given my heart to another and had it completely broken.

I've had someone help me put the pieces together.

I've put many pieces back myself.

I've been told to just shove the pieces in, enough is enough.

I've had many close friends who listened over and over while each piece was put back.

I've done my best.

I've learned sometimes your best just isn't good enough.

And then I've had someone hug me so not only all the pieces stuck back together,

And In that moment it was all good enough.

More than that, it is the best.


Monday, May 7, 2018

April with Team Mallory



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. 

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. 

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. 

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***

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!
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Thursday, May 3, 2018

The Meaning of Mutant.

I am a MUTANT. But guess what? So are YOU! neener neener neener.



mu·tant  ˈmyo͞otnt/


dictionary.com

adjective

1. 1.
resulting from or showing the effect of mutation.

noun

1. 1.
a mutant form.

Merriam Webster Dictionary

NOUN

: of, relating to, or produced by mutation


OXFORD Dictionary

ADJECTIVE

Resulting from or showing the effect of mutation.
‘a mutant gene’

NOUN

A mutant form.
‘frequently only a small percentage of the offspring of mutants resemble their parents’


Cambridge Dictionary
NOUN
an organism that is different from others of its type because of a permanent change in its genes:
These mutants lack a vital protein which gives them immunity to the disease.
This mutant gene is thought to cause cancer.
figurative humorous I'm convinced he's a mutant - he's not at all like the rest of our family!

disapproving an unpleasant and frightening thing:
The result of these experiments will be a nightmarish world filled with two-headed monsters and other mutants.




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. 

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. 

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. 
You have: CANCER. Your scars are HORRIBLE. I AM A MUTANT!

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???


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. 

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- N-word, 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. 


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. 


What does the word MUTANT mean to you? 


-   Super awesome
  • PURE FUCKING AWESOME BADASSNESS!!!!
  • A family that I love and adore
  • Not wild type
  • Containing novel genetic information not inherited from parents
  • The X-men  x 10
  • someone who has a mutation
  • Pure love
  • Baddest form of badassery ever. 
  • 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.
  • I am in a family of mutants so family reunion to me.
  • Love
  • Before i used to think X Men 😂... 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 ❤️
  • Inner Strength, resilience, friendship and understanding
  • 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...
  • Teenage Mutant Ninja Turtles
  • 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... #ProthrombinGeneMutation
  • Courageous badass super hero
  • The key to the future of humanity 
  • Friendship, connections, scans, fear, love, science, hopefully awesome super powers!
  • A tribe trying to withstand this p53 mutation shit storm through love, friendship and a little humor.



Wednesday, April 11, 2018

Investments

When 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.

I invest in the future.

There are days my investments may kill me.

There are days my investments make me cry. sad tears. happy tears. tears of agony. tears of pride.

My investments are expensive.

I have no idea what the interest rate is on my investments. So far it seems variable.

My investments are stressful.

My investments are helpful.

My investments have unlimited potential, they just have to realize it.

I have put so much into my investments, I wonder how I have anything left to share.

When I feel depleted. I remember my investments.

Sometimes I get lucky with investments.

Sometimes I have to rely on luck to get me through my investments.

Sometimes I wonder how I could be so lucky.

My investments are ALWAYS worth it.

There are times I ignore my investments. Let them accrue. Let them diversify.

At times my investments are volatile. It is then I rely most on mutual funds.

Investments are more than fiduciary duty or yields. It is about bonds.

Investments are my best assets.

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.

My children are the best investments I have ever made.


Wednesday, March 28, 2018

Team Mallory Takes on St. Baldrick's


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.
Oh monkey. 
Bella Boo- by Lily's side most of chemo



Phillip and Lily's special bond and ELEPHANT!!
sisters. first. forever. 
This is how we feel about Childhood cancer. 
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 living LFS, 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.
Living LFS mutant sistahs. 


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.

https://lilykaymonkey.blogspot.com/2014/04/finding-something-she-can-do.html


 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.



https://www.stbaldricks.org/blog/post/the-girl-who-beat-the-odds-lilys-story


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.

Lily rocking it after shave 2.
Photo credit:Debbie Leanne. 

http://lilykaymonkey.blogspot.com/2016/03/lilys-second-shave-for-brave-st.html

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'm gonna shave for St. Baldrick's! Ok, why. For Lily. Ok then. We can all shave. 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.

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.

Thank You for continuing to support Team Mallory and our Many Adventures, Especially adventures that Fight Childhood Cancer!


Bella's Page



Jen's Page






Monday, March 12, 2018

Cycles.

I have 3 girls.

Enough said.

Karma. Payback. I was NOT that tough a kid. THREE girls.

Phil is oldest of 6 boys. One sister. This karma is on him. And where is he? Bali.

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 US. 

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.

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.

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.

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.

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.

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.

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.

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. *

*"better" and "prettier" are entirely subjective. Still nailed it.




Wednesday, February 28, 2018

Big Dreams

Sleep is an elusive thing. Between the stress, the steroids and other factors- my brain does not want to shut off. Unless of course someone is asking me a question or I have to remember a schedule- blank city. We forgot not one but 2 of Bella's tap classes last week. By we I mean her. We are to the point they know mom's memory bites and they are responsible for remembering. In her defense, she did have a cold and truly benefitted from the down time and not infecting others.

After brain surgery- I had wild dreams. Narcotics will do that- hallucinations really- auditory, visual. I'd wake myself up talking to someone and see they were not there. I am not a fan and was relieved to get off the crazy meds. Maybe once or twice a week do I sleep deep enough to dream. It's like visiting an old friend, sleep and dreams- oh how nice.

https://www.stbaldricks.org/participants/mypage/940469/2018

We are on the cusp of March. Lily is my calendar girl. She is a planner. For 2 years, she's been planning to shave her head again for St. Baldrick's. Once again, I wait and see what time will bring. It brings Lily with even more conviction and desire to help. The girl has dreams. She loves people. She loves raising money for cancer research. As she is turning lucky 13 this year, I gave her the password to the St. Baldrick's account and helped her get her page for this year set up. I showed her how to check for donations and to send Thank yous. She has been practicing lettering and had some incredibly generous donations- so she spent one weekend making thank you cards.

2017 was a rough year for loss. We lost some very special friends and it feels like everyone we know is facing tough battles. Lily watches me intently and asks- how is your heart? She knows some days it hurts a lot more than others as we wade through the feelings. Complete gratitude she and I are here together, shock and anger that wonderful humans are not. She sings. She reads. She feels. She plans her shave, she shares her dreams at school and her teachers have been incredibly supportive.


The first year she shaved, she did it for me. The second year in honor of sweet angel friends we had during treatment. This year she wanted to shave in honor of her mutant buddies. Li-Fraumeni Syndrome gives us faulty tumor suppression, but truly incomparable friends.  This year she shaves in honor of Ramernation, specifically Brent and Lauren Ramer. Lauren is about to finish chemo for her 4th cancer, 2 of which were brain tumors.  Brent passed away December 30 at the age of 18, after many years of battling different cancers. Yet it is important to Lily to shave in honor of all her mini mutant buddies. Kids like her, Brent and Lauren whose genes may be faulty yet they leave an exceptional impact on everyone they know. She shaves so we can find better treatment and cures so kids can realize and live their dreams. A million dreams.


Please Join Us on April 22, 2018 for the Shave! No shaving required! Show your support for Lily, her mini mutant buddies and all kids who deserve the chance to live their dreams!! You can donate , you can share her link, and there even may be an event near you!

St. Baldrick's HAWAII

Tuesday, February 20, 2018

Urgent Care

When you are diagnosed with any life threatening condition, or even think you have a condition- you feel the sense of urgency.

Urgency to live.

Urgency to love.

Urgency to get things in order.


Or to get the chaos managed in a semblance of well- managed chaos. The months leading up to my surgery were filled with the urgency. After Lily was diagnosed, urgency to fill our lives with as many memories as possible. Living with LFS, knowing life is short- being reminded by every lump, every treatment how impermanent we all are.

Did I want to leave my children memories of me sitting at the computer? No. So the book goes unwritten. The stories are written in memories.

Did I want my husband to regret the times away? No. So we feign normal. We fall back into routine, with prescheduled reminders of how quickly it all will change. Not CAN change. It WILL change. We don't know when or how. So we urgently persist. We urgently live.

You pray for normal. Then normal shwacks you upside the head- burying you under your new normal with normal normal on top. It comes in the form of a kitchen full of maggots, car trouble, garage trouble, health trouble. Kid trouble. Politics trouble. And my soulmate, my better half reminds me- this is normal. Deal with it. He leaves early every morning- his escape to another normal- with hundreds of other normal problems. Urgent in his world is very different. Much bigger problems. Just as it isn't always noticed when you do a good job, when others don't do theirs- it trickles down. It is noticed. In the form of maggots and brokenness and trouble. So you triage. The squeaky wheels get the oil. Unfortunately there is far too much squeaking and not enough oiling.

Phillip has been complaining of headaches. Then he had bloody noses. Kiera's back is bothering her. They both have MRIs scheduled, which is a task in and of itself. Which reminds me we are due to check on Bella's arm. Which reminds me I am due for scans. Lily always has something- but for the moment is the least urgent of them all. When things move fast, it is scary- things are rolling along and we are hoping to be dealing with normal stuff.

When a friend asks which day is busiest, she'd like to bring us dinner- I gratefully say any day is fine- truly- Thursdays are traditionally take out or leftovers if there are any. I am grateful when she brings dinner on Thursday. I think the kids are almost through the Costco sized Ramen. Which I keep telling them isn't real food and we need to go over some basics. But then something urgently needs my attention and well, you know, normal.

When Phil texts from work on Friday that a good friend is in town, do I want to meet up and maybe stay in town? My gut reaction is- dear God I am so fucking tired and I'm pretty sure I will be no fun. But I say yes, because you know- urgency, we don't get many nights out- the big kids are working, the littles want nothing more than to eat pizza while watching tv- so yes, yes I want to do something normal.  And then your very good friend meets up for a hug and hands over a key to a hotel room and sends you on your way to dinner with promises to meet up later for a drink. So you have an incredibly lovely dinner with your amazing husband and you remember when this was somewhat of a normal thing and I am so incredibly grateful for those somewhat normal times and the urgency we had to have them. I am grateful for the wonderful friends who continue to support us knowing we really mean it when we say we owe them and also know the debts will probably go unpaid.

It was a great reminder that self-care is urgent care. Years ago I was running ragged trying to get the nonprofit living LFS in order, not wanting anyone to feel the loneliness of LFS if it could be avoided. Friends rallied to my side when tumors reared. Urged me to take care of myself and when I wouldn't, made sure they did. Each one knowing urgently how much self care I needed because they too urgently needed care. I hate not being able to be the friend I want to be. It gets lonely. The self-care thing. Sometimes the positive side is elusive. I am so grateful for the friends who have become family. Who check in and keep me from checking out. I am grateful for my kids who remind me hourly what normal is and daily what exceptional is.

So I stack our appointments, to limit hospital time where we can(flu anyone? no thank you) for March 5th.  I'll wait in the chemo bay while the bigs get scanned and meet with my oncologist. My scans and Bella's scan will pend appointments and urgency. One shark at a time. Hopefully they are just fish. Then we keep swimming- for now I am Grateful for the boat and that I can wave to friends nearby even if we aren't always in the same boat.


Thursday, February 8, 2018

Eric's Garage.

My last memory of my cousin Eric was his laugh, as he sat on my dad's lap in the tiny Toledo airport shortly after New Year's 1994. The next time we'd fly through there would be for his funeral in April, then again in June for my dad's service. He is celebrating yet another birthday in heaven today.

When he was just a baby, I got to "watch" him as the family gathered downstairs. I would prop him in my bean bag until he would fuss- the pick him up because clearly he needed me. A few years later, when they visited us in Denver, we were family but almost strangers- no longer being able to see each other weekly or for birthdays- but sometimes through videos sent back and forth and pictures. He had a broviac for chemo and while they were there- I was the only one he would let clean it. He was such a wonderful little butthead. It meant a lot to me.

Of course I wonder what he would have accomplished had cancer not taken him. I know for sure how much we all were changed for even having him for those brief years. I had already gotten accustomed to the distance since we had moved, but for my cousins- the much wider gap left for them would never be filled. Pirate ships, nachos, crazy pranks. Goonies Never Say Die.

Bella has been on a burrito/taco/nachos binge. I think of Eric a lot. I worry about my family. Despite the years, you learn to move around the grief. It is always there.  I also remember Phillip's brief stay in the hospital as Pancreas Boy and promises of Nachos to get him through the week of feeding tube while his pancreas rested. A simple, common thing like nachos- something you wouldn't think could completely wrench your heartstrings. Sharing a beer with my dad during Monday Night Football, stealing his olives from his martinis. Soon he would put an entire swizzle stick full in his glass, just for me.

So of course the other night, in the midst of running back and forth- the garage refused to close. It's old, it gets overheated and just refuses. At first I would get frustrated and angry, now I'm just plain sympathetic. Phil texted he was on his way home, so I sat outside in the breeze and waited- surely it would close on the first try for him.




 The messages went like this:

 I of course had to text my aunt and cousin- that autocorrect named our garage Eric. My aunt reminded me his birthday was in a couple days. I knew it was in February- but honestly I'm terrible with dates. She also reminded me about the time Eric got his mittens stuck in the garage- hoisting him like a pirate ship jolly roger. So I got out my label maker and made a sign for our sign.



and believe it or not, we were out of margaritas, no rum to be found- so I soaked some olives in vodka and toasted Eric and birthdays and signs and of course to naming Eric's Garage- which has been working since- we'll see what today holds- Eric loved a good prank. Happy Birthday Butthead. 

Wednesday, January 24, 2018

Waiting for Superpowers

I'm hopelessly behind on updates. So I'll try to be quick. I keep thinking I'll write a quick post or thought a day, but something pops up. The kids and I are doing these daily journal books- which are quick and fun and also give me an idea where we are all at emotionally. Kiera doesn't participate but helps clean and run errands- which gives me an idea where she's at.

Before Christmas, Phil and I met with the Radiation Oncologist re: the spots on my pelvis and spine. It is a bit hazy since it was the morning post adrenal crisis and Phil had to give me a second shot before I could roll myself out of bed.

He was great- I was a mess.  Phil asked the right questions, we looked at the images. Those always hit home. There was also a spot on my right pelvis that we wanted to consider scanning prior to treatment- in case it needed a zap. Scans are great, but really unless you biopsy-you don't know for sure what you are dealing with so you can watch and wait- if it walks like a tumor, talks like a tumor...

I wanted to discuss a few things with my oncologist, endocrinolgist and trusty mutants before setting a date. Then there is Phil's nebulous schedule and trying to plan. My nurse and oncologist opined that radiation was probably our best choice, it was too soon to rescan with PET though, so they would discuss timing with the rad onc while I contacted the endo. Between training days, holiday, chemo- this is a process and of course mid discussion with endo she drops the- I'm going on maternity leave bomb. sigh. She helps me calculate stress dosing and gives me the on call endo's name. I ask her politely to please fill him in on me. Of course. No seriously...I did come away with a decent- avoid crisis during chemo weeks plan and a window that would be better for rads.

So new Year's came and went. We headed into January chemo. It was the best time to settle the radiation decision- I was going to do it- just had to get up the nerve and time it. Fortunately it was super busy in the Bay and no one was particularly bothered to lecture me AND they put me back in the isolation area which-drumroll please-I had never even visited. It was just that busy. Phil tries to knock out some other things while we are there and found my Debbie friend in the abyss that is the pharmacy waiting room. I have a very short list of people allowed to sit with me. Many say they feel bad when they see people alone in the Bay- for some it's a time for meditation- as much as you can in a big room with 10 strangers all in varying degrees of discomfitude and everyone knows everyone's medical business. I also now know where they keep the snacks! And am grateful Deb got to share the time with me- it made a long day more enjoyable.

I keep my schedule open now the first 2 weeks after chemo. I find that emotional stress honestly pushes me towards crisis pretty quick and if I run around too much, well that doesn't help. There were 2 major events lined up for the Saturday, a paddle out memorial for a friend and a 1st Birthday celebration for a special little friend. Both events carried with them significant emotional balloons.  Then Thursday evening, the rad Onc calls and wants to schedule treatment which entails a planning CT, planning period then radiation. We were going to wait for the next PET, but overall- no time like the present? I scheduled the planning CT for Monday, not knowing how long the planning period would be and having already scheduled a Physical Therapy appointment. I explained that I wanted the treatment before chemo, but not during the crisis prone first 2 weeks after chemo, the other issue being my pesky platelets which are not rebounding at all. He mentioned planning could take an afternoon to a week depending on several factors. But his plan was to use IMRT- a more focused arc of radiation to avoid damage to surrounding tissue as much as possible. Very similar to gamma knife.

With short notice, I knew Phil's schedule might not be easily arranged and asked Kiera to skip school to drive me Monday. You'd think it was Christmas. Sweet girl. Germaphobe and all- I even told her she didn't have to come into the hospital with me, but she sat while I did PT and then even chatted later with the rad onc. She was a little put out that he over explained things- but I prefer that to the alternative. She was thrilled to watch HGTV in the waiting area- squeaky couch and all while I did my prep CT.

Now, we try to avoid radiation when possible. Radiation works by damaging cells- my mutant body doesn't clean up that damage as well as a non mutant's. So normally I'd fuss about all the CT's and stuff, but feel like we are on the same page and the info has been passed. I get a gown and robe and am instructed to strip waist down. I'm so used to waist up ops- I feel overdressed on top- bra, shirt, gown and robe. Truly grateful I wore a long shirt- feeling a bit breezy- but all's well. The tech takes me into the room, explains the process, how it will work today, why, how it will work for the actual treatment, why planning could take an hour or days....he was great. Theres a blue pad on the table- I lay down and he will squoosh it around my legs to make a mold- it helps to keep the pelvis and spine in the same position for treatment. I manage to gracefully lay down, keeping covered, he lays a blanket on me and proceeds to squoosh the mold. A couple minutes in he huffs like Dobby does when you won't share dinner with him. I apologize for being difficult- he says he's just not happy with the mold- would I mind trying again? I don't mind at all- I prefer them to have exactly what they need for the best result and I imagine these mold thingies are not cheap. I hop back up as he brings the next mold over and lift my legs so he can put it under. As I do this- a nice cool breeze reminds me I am commando. Oh Dear- I shove the gown between my legs and apologize- probably should have considered groundskeeping with pelvis anything- but I wasn't expecting commando and CT don't care if you shave. Then I realize the door is at the foot end- lucky no one walked in-and right above the door is the closed circuit camera. Yay- my first naughty tape- of course it would involve a scanner of some sort. boom chicka wow wow- I didn't order any contrast....

Anyways- Cts are fairly easy peasy and quick- you know if you have ativan on board and have gotten past the genetic assault about to occur- it was the set up and the markings that take time- I got four stickers(one on each hip, one on my belly and one apparently that was hidden in my c-section-hysterectomy scars- how embarrassing?) to wear home and the tech said they would shoot for Monday or Friday of next week but he'd call once planning was done to confirm. Needless to say- I was surprised when he called the Tuesday afternoon as I was picking Bella up from school. He said the planning was done- which I guess is good- no surprises  and I could come in tomorrow or any day this week if it was better. ARGH. I hate the the ball is rolling too fast now feeling. hurry up wait hurry up wait. I let him know I have to check Phil's schedule and that would really set the day. They are way easy going in the rad onc clinic. It's a bit creepy at times. He said just give him a call- if we can do tomorrow great- they had everything they needed so it was when worked best for us.

Phil was flying Tuesday, I knew I wouldn't hear from him until later, so I texted him the deets and was surprised after he landed when he responded Wed. works best. Wed. as in tomorrow. Ok- let's do this. I kinda wrote off the evening. Spend an hour boo hooing on the phone with my friend Trish and had the kids make themselves dinner. Phil got home. We decompressed. He slept. I laid there performing great mental gymnastics- olympic level shit. Enough that by 3am I wasn't sure if I was in full on panic attack or adrenal crisis. It's one of those things- You can talk yourself up, down, around, in between. You can relate it to experiences and know you've come out fine. And you also know shit happens. Radiation was awful for my dad, it killed my grandfather. Neither would have survived their tumors- but the rads made it worse. I know so many who struggle from the after effects. The plan is one dose and done. Higher dose, but more precise, hopefully less damage. I was terrified of gamma knife- it wasn't easy but comparatively an easier way and not too tough to tolerate. The whole brain surgery swelling mopping up later are the after effects I speak of. And I've been really lucky there too. The PTSD is there. You just deal. Sometimes with big doses of antianxiety meds when the oils and the pacing and stretching all fail.

So I woke Phil up, he held me on yet another ledge until the ledge ebbed away and I slept for like an hour until the girls came in to say goodbye and I had to shower. Everything went really smoothly today. As planned. Got there- got set up- got irradiated- didn't feel a thing. They did give me 3 tattoo
dots as markers "in case"- I asked if she could do an elephant- she said no. Plus the stupid low platelet thing made them bleed and she was not down with that. I hope the recovery will be unremarkable. Everyone says I should tolerate it very well, as it was just a single dose and radiation effects tend to be cumulative. I had a great ativan nap when we got home and Phil made a delish dinner and now it's time to decompress.

This blog brought to you from my quiet space.... ha ha ha ha- but they are very sweet if not conducive to my writing. Oh my God- I almost forgot the best thing- we got a parking pass to park in a radiation therapy spot today! And there was a spot- and we parked in it! Sometimes its the small things. Now I have to wait for my mutant superpowers to reveal themselves!

Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)