Tuesday, January 28, 2014

Team Mallory

Right after I started treatment, my good friend Gina- from her remote location- sent me an email asking if she could help create a T-shirt as a fundraiser for our family. I've known Gina for a lot of years and she is a kind, thoughtful person. Of course my gut reaction was- OH Dear God No. But I decided to heed my mutant friends' advice to allow people to help me and took a moment to think on it. I like Tshirts. I wear Tshirts. Phil likes Tshirts. He wears tshirts. The kids are constantly growing out of their Tshirts. We have Tshirts from squadrons, from trips, from sports and now theatre. So why not? 

I talk to Phil about it, knowing full well his reaction is going to be- OH Dear God NO. I was not prepared for the veil of despair that came over his face. I expected the adamant proud reaction- we are fine. I jumped on the defensive and explained we needed to let people who love us help and the majority of our family and friends are over the ocean and cannot prepare a meal or run the kids to school and want to help. At least that's what people keep telling me. He simply said- It's not the T-shirt. I don't want to be the family that has a Tshirt because I don't want it to be that bad. I'm not ready for it to be that bad. 

I understand the panic. The tough realization. I hate that I ultimately am the cause of pain for him. That there is not much we can do to change the course we are on. A course of limited time.  When my brother Bob got sick there was no time. No time to Make a Wish much less have it granted. Barely enough time to say goodbye. Some of the toughest parts are the unknowns. But I remind myself, no one knows. We were told maybe 5 years with Lily. You just don't know. We have some key information that changes the way we play. Perhaps it's time to let our friends play along side us. So I sit down and try to think of what I would want on a Tshirt? That wasn't swearing associated with genetics....

When we joined the Air Force fighter community years and years ago, I made many friends- some by chance, some by design.  It's a family in so many ways. Orders throw you together- but choice keeps you together over time.  A friend, who both she and her husband outranked mine by several years taught me that friendship and respect know no rank. Long before Edward or Jacob became the gold standard of teaming up-she referred to every family as a Team. She was kind to everyone and taught us most success comes from working as a team. I embraced this approach and welcomed every letter and every card that greeted us over the years with her signature address- 

A few years after moving to Hawaii, I faced the challenge most stay at home moms face- what is my purpose? Is this enough? Meanwhile my mom felt further away from each milestone for the kids and I tried to find a way to bridge that gap with a new technology- blogging.  The kids were monkeys in every way- and it became Monkeying Around. As life and technology seem to do- all this changed and grew when Lily was diagnosed with 2 cancers- one of which had and extremely poor prognosis. Entries were no longer happenstance potty training forays- they were a lifeline- a way of healing and sharing the heartbreak and survival through a really dark and scary time. The title reflected our military connection and the focus of the time- Lily Kayda and the Tale of the Terrorizing Tumors. Publicly blogging forced me to find a bright side to every story because I firmly believe that the way you approach a problem and attitude affects the outcome. It also became a tool for me to help others understand more about us and living with cancer as those who live with hereditary cancer syndromes like Li Fraumeni Syndrome have to do.

I never thought cancer would skip me. It is a lifestyle of careful watching. Knowing my body and trying to teach the kids without being oppressive to do the same for themselves is always in the back of my mind while preserving a sense of normal. Although there is always a certain element of shock with cancer diagnosis- when you have a family cancer syndrome like LFS- you kinda are waiting for it. After watching my dad and brother be stripped of their personalities quickly with brain tumors- breast cancer was a relief for me. At least it was a part that could be removed. I knew it was still a threat. But the summer after my surgeries was the perfect answer- visiting family and spending time with my kids on the road- like my family used to do growing up.  One of my favorite mementos from the trip was a necklace I made in Colorado while Kiera tried to decide on which beads she wanted. It was a simple endless knot with a few beads. Some call it a celtic knot. It winds round itself like protein structure or DNA. Some call it a Buddhist knot. Also appropriate since most only know my better half as Buddha. Either way I love the symbolism of it. No beginning, No end. 
with my buddha, my monkeys and my necklace

SO I cut and pasted my ideas into a rough outline for Team Mallory- jet, monkeys, knot- and sent it off to Gina. She took care of contacting the company and after a few weeks they fired off some designs. When the design opened on my computer, my first thought was- OH DEAR GOD NO.  I shot it off to my cousin who said she liked it. It was a monkey driving a very inaccurate cartoon of a fighter jet pulling a banner. A monkey driving a jet? Pulling a banner? No. That is not going to fly. My cousin said no one expected mechanical accuracy on a T-shirt. I've long given up on accuracy but I just felt like it missed the target.   We were fast approaching Christmas, there was too much going on and I was spread too thin so I told Gina I would have my cousin come up with something and filed it away under a dusty mat in my brain. I was a failure at letting people help and I tried not to think about it again. Until Gina forwarded me some ideas her friend Hope, a graphic designer put together. They were beautiful. The knot was the same as my necklace and the center of Team Mallory. Four monkeys and their shenanigans. The jet, symbolic of not only a career, but a family of support. She captured us. And without these amazing ladies- the concept would still be buried under that dusty mat in my brain. I finally confided in Gina that my worst fear is that they would go to all the trouble of doing this and no one would want a shirt. Sometimes it's just easier not to ask for help than to ask and get rejected. 

So Imagine my shock to see within the first few hours, dozens of shirts selling.  The support is overwhelming, unexpected and so appreciated. As a friend said- it is exactly what you would do it for any of us- we just want to help. I knew letting others help me would be difficult- but I had no idea it could be so wonderful. Thank you to Gina for not giving up when I was difficult. Thank you to Hope for capturing a vision. Thank you to those who keep up with us and are brave enough to publicly announce any association to us. Thank you to all of our friends for the support and love. Team Mallory is bigger than I ever expected. Thank you for Hanging Strong with us. 

Shirt Orders can be placed until February 15, 2014.  CLICK HERE to Join TEAM MALLORY

Thursday, January 16, 2014

Plan Be

For all the unfortunate things that have happened in my life, karma continues to try to provide me balance. The majority of this balance is being navigated, crafted, invented and hard won by my best friend.

He makes me feel better. He makes me want to be better. He makes me better.

When this started and I was spending the better part of entire nights in the bathroom- worrying about him and how he was going to function the next day at work if I kept making a ruckus- he would wrap me in his arms each time I got back to bed and say amazing things like- thank you for doing this. For us. For me.

And I would reply things like- well if I didn't there would be a mess in the bed and neither one of us would be sleeping.  At a different point in our marriage - that might have been a good thing.

The next time- Thank you for doing chemo and being so tough for us. For me.

And I would reply something like- I'm not tough. I'm broken. I'm sorry your wife is broken.

And he would reply- even broken, my wife is better than 95% of the wives I've met.

And I say- what exactly makes that 5% better? And he laughs and he still somehow thinks I'm amazing.  I bet that 5% sleeps through the night.

This month is tough. We have 2 chemos(1 down, 1 to go) Lily's endocrine appointment, Phillip's endocrine appointment and all of the ancillary appointments, tests, etc that come along with them. Then I have Lily's school- who now that we are into January of 2014 is fiddling around  with her emergency plan because they might get a nurse who might be able to administer Lily's emergency shot in an emergency. I just like saying the word emergency.

At first I was relieved and happy and grateful that the universe was providing this extra layer of protection for Lily monkey at a time when I may not always be available or near. And now 3 months later- the only thing that has been reaffirmed is that I sure hope the universe is better prepared to help out in a true emergency because this plan is failing.  I've signed countless papers elucidating- the plan. I've signed releases of papers to release the plan to get doctors and nurses to sign off on- the plan. I've taken calls about- the plan. I've had 3 meetings about- the plan. And more calls about - the plan. And yet there is this plan that no one can follow because not everyone has seen the plan.  Lily's teacher is absolutely amazing and compassionate and working with me. Her counselor also tries to make my life easier- going so far as to bring paperwork to the car for me to sign in the carpool line. Her endocrinologist is thorough and very clear on her needs for- the plan. So one would think that everything would fall into place. I'm not holding my breath. The only thing that seems to be affecting the plan is a looming field trip. According to -the plan- a skilled nurse can go on field trips instead of me. Yet since the plan is not in place- we need to have -the Plan B. Which is for Phil or my neighbor to go on said field trip.  I feel bad for Lily's teacher. She's trying to make me comfortable and help and make lily happy and work within the system and I just want to crawl into bed. I would love to go. I would love to feel well enough to go. I don't want any of it to be a problem. Phil's already finagling so many days this month to go to all the appointments and now Lily wants him to be her field trip buddy.

I hate that he is trying to juggle all the stuff I normally juggle. I hate that he knows I wouldn't drop the ball and he's madly juggling and balls keep flying into the mix. I hate that I can't just say screw it and let the balls fall.  I hate that I know exactly how he feels and there is nothing I can do. I can't even pretend it doesn't matter because he knows it does. I just want to grab random balls and hurl them at - the plan.

So he takes Lily to see her endocrinologist. Actually it went like this- Jen delivers Lily to Phil at work- Phil takes Lily to Tripler- Jen runs back to get other children from school- goes home. Lily walks in after her appointment and proudly announces she had 2 X-rays- well it was actually like 4 X-rays- this one(she holds her hand flat- thats to get a rough bone age to see if she still has accelerated growth) this one(she stands tall- chest X-ray to check for toomas) and this one(she hunches over- the second of the chest X-ray set) but they messed this one up(she hunches over again) and so we had to do it again. Daddy was mad.

I start to fume- with my anti radiation policy- I'm about to pop a gasket- Phil walks in- before you hear from Lily she had 3 X-rays and I schooled them about their incompetence and the chest X-ray is in place of the CT scan this round so it's less radiation overall. I smile. He's got the Plan. He's wonderful. Except he's carrying a big bag from the pharmacy with a vat for a 24 hour urine catch and I really can't for the life of me figure out when she is home for 24 hours straight and I really don't want to go mobile with a refrigerated vat of pee. Man things are hectic. And I'm clumsy- lord help us if I spill the pee. One more thing to worry about and Phil is writing the next appointment to check her hormone levels on the calendar and explaining the MRI plan. We are going to just do abdominal MRI this time- try it non sedated but schedule a sedated slot in case. Ugh we tried this last time- the sedation slots always come open before the non sedated slots. We'll figure it out. Her full body scan can be pushed back to July and coincide with the other 3 kids annual scans. I can't think past this week so- that will have to ferment in the queue.  All in all we have a few things to do to follow up with Lily and her growth- but it's our routine. She is doing good and is far enough out from treatment that we are getting some wiggle room in scans. Wiggle room that has already been appropriated to other needs- but that's all in a days work.

The next morning we turn around and head back to my oncology appointment. You kinda never know if it's just a touching base kinda thing or if there's a bomb somewhere about to get hurled at you. I prepare myself for either case- trying not to worry and telling myself it's routine and worrying just enough that I won't be blindsided by requests for scans or ovaries or something else. Somewhere in there we realize that I am due for chemo on next Monday and there are signs all over saying they are closed on Monday. Probably a good  idea to get that figured out.

The onc looks me over. Seems to be fairly impressed and doesn't make it sound like I'm dying this month- so that's good. I resort to inappropriate humor because that's what I do when I'm nervous. The one thing I want to know is- is there an end in sight to the one chemo or is it a forever thing like the other 2. He pauses and is calculating his response.  I appreciate that but the answer was in the pause.  The only reason I will get to stop the chemo is if the side effects become such that I need a break.  Whether that is fatigue or GI issues or rashes or whatnot- pretty much as long as it "works" - I will be on it. If it stops working. Well that's not good. So I focus on the- is it working portion. The results of the Xray before last cycle implied it was working. He pulls up the X-rays and puts them side by side- a couple weeks ago and September.  I see the tumors smattered about. They aren't as glaring as on the PET/CT but that is the nature of Xray. But they definitely are "not as conspicuous" in the recent Xray.  This plan is indefinite. When it becomes finite, we worry. So we wait and we plug along and we hope.

We schedule chemo for this Friday instead of next week because Phillip has his endocrinology appointment next week.  They draw blood while I am there and hopefully that will make friday a shorter day. I make the nurse draw it from my arm instead of my port because last time she drew my port it hurt and this is my way of testing her. I have shitty veins. She gets it first try. Ok, she can be trusted. We are walking to the car when it occurs to me.  I guess this bald thing is essentially permanent. And I felt sad for a minute. Then I give myself a gut check. I'd been playing  the "would you rather" game with some friends online and it occurred to me- this would you rather was a no brainer. Would you rather be bald or the alternative which is not BE at all?  I'll stick with this plan. Plan Be.

And last night- after one of my bathroom excursions- Phil rolled over and wrapped his arms around me and thanked me again for doing this for us. For him. And for a change I say nothing.  Because it's all part of the plan. There is no place I would rather be, no one I would rather be with and I would do absolutely anything to be the woman he thinks I am, to be the woman he deserves. And to do that I will have to continue with Plan Be.

Wednesday, January 8, 2014

Mini Mutants and the Future of Mutant X

I remember sitting in the clinic during one of Lily's chemos when the oncologist came in with my kids' genetic test results.  I always operated under the assumption that they were positive- but it is a very complicated issue.

I'm sorry but they all are positive for the mutation.

We knew Lily was(despite prelim tests saying otherwise- ALL tests can be wrong) because we were sitting there in pediatric oncology. I knew it in the core of my being. I knew it when I saw the lump on her leg and that first stupid little prepubertal sign.

I was really really hoping for at least one to not have it.

And this is the point it gets tricky.  Of Course I didn't want my children to have it, but in my mind- it didn't really affect their individual risk or how we faced the journey together.  Scientifically- I know this is not a supported argument. But how I feel cannot be contained by a library of scientific documents. I would never ever choose this FOR my children, but without it- we all cease to be. Until there is a treatment, the only prevention is to select against the being. Genetic tests are a complicated affair. Complicated emotionally, complicated scientifically- overall one big complicated conundrum wrapped in an enigma served with a side of quandary.

I knew I had the mutation. When I was 18, my parents asked me if I wanted to be tested- I said no thanks. Even at the age of 18- my gut instinct reflected the complex nature of genetic labeling despite the fact that I did not stop to consider future emotional, physical, medical or insurance ramifications. All big players in the debate. How can anyone be expected to emotionally handle knowing their chance of getting cancer is like 87%? Physically- one would think this would help facilitate appropriate medical care- but I would encourage you to ask the next medical professional you run across if they've ever heard of Li Fraumeni Syndrome.  Many times it merely facilitates your ability to advocate for yourself more specifically.

I am in a support group for Li Fraumeni Syndrome. I'm a firm believer that social support by others who are going through similar trials can make all the difference in a person's journey. I also believe that healthy debate and contrary view points are instrumental in this journey.  I am not always right. And certainly what's right for me is not right for someone else. But sometimes you can get lost on your journey and if you have others experiences to guide you- it helps you make sure you are on the right path. Ultimately we never really now if the path is right, but sometimes the time passes a little better with someone by your side, pointing out things you may have not noticed otherwise.

One of the big discussions is about Preimplantation Genetic Determination. This is essentially in vitro fertilization with embryos that are selectively free of the p53 mutation.  This method can cost tens of thousands of dollars, but to some, this is an investment that will save them on costly cancer related medical bills down the road. The savings in emotional trauma could be priceless. The other option is is prenatal genetic testing. The genetic test can be done by amniocentesis and then the option of what to do with that knowledge is up to the parents.

A friend recently forwarded me an article about a family who received a 50 MILLION DOLLAR settlement because their child was "wrongfully birthed". Meaning they had the prenatal genetic test performed(for a different mutation), the results came back that the baby did not have the genetic defect when in fact he did. The family's counsel argued had they had the accurate results, they would have aborted the child. Mind you the child is now 5 and severely mentally and physically handicapped due to the genetic "defect".  SO in my mind- thankfully that child does not have the appropriate cognition to hear his parents repeatedly say that he was not wanted. Hopefully he does not have to feel this on a daily basis, but on any level it makes me sad and very angry.

This is not about abortion. This is not about mutations or science or God.  Like I said- genetics are a very very complicated issue. They are us on the very most basic atomic level.  I wholly support individual rights and freedoms to make their own stupid decisions. It does not mean I agree with it. But for me- when you step into the arena of parenthood- by accident, intent, willfully, maliciously or ceremoniously- the game always changes. You are no longer responsible for 1 human, you become responsible for more. You become responsible for the future, your future, their future, society's future. If you want to genetically design your child to be whatever way you can handle or love better, that will reduce reuse or diminish some burden on you or society- that is your prerogative. You will also learn the very real lesson in parenting- you are never fully prepared for parenting. Sure you want to give yourself the best foundation and in the case of selecting against having a harmful genetic mutation- maybe for some this is their best bet. Others will argue to let nature take it's course. I'm pretty sure we've already modified nature with radiation, technology, GMOs and vaccinations- but that is another subject for another time.

Every person needs to look at what they can handle. Parenthood is like one great big eternal surprise party. You never know when the diaper is gonna leak in the Burger King play place,  or when the flu will strike during vacation, or when a tooth gets chipped or a bone broken, or when cancer might strike or alzheimers or diabetes. All of which can be genetically "given" or acquired through lifestyle.  Or both.  But people have to choose their journey and if pre-selecting embryos gives them an ounce of control in a crazy situation- then that's what they have to do. At what point do we continually hold everyone else responsible for our choices?

I rolled the dice. And it has been hard. At times parenting feels like an exercise in continual disappointment. And it has been complicated by cancer- of which my children all are at higher risk for. I would not change them. Of course I still hope they don't have to deal with cancer and I sure as heck don't wish it on them. I would never choose this for them. But more often than not- the adversity that changes our journey is our reaction and perseverance to do just that despite and unchosen obstacle.  But there are so many things that we can not control- even if we try to. I would not go back for anything and select against them. And I am sure glad my parents did not have the knowledge, science or means to even think about selecting against me. And if I have at all touched your life in even a small way- then know in It's a Wonderful life fashion- that is how I feel about this. Not everyone is equipped for this journey. But I also have tons of friends who have children with cancer who had no family history of cancer. I know many women in my support group who are the first in their genetically non mutant families to be mutated. You never know when that surprise party is gonna be thrown. I know cancer. I've lived cancer. This diabetes thing- crazy. Many of my friends have kids with celiac(guess what- also a genetic mutation....)Alzheimers-scares the bejeezus out of me. Metabolic and genetic disorders that result in children who require 24 hour care- break my flipping heart.

I chose my children by nature of how I live. By accident or By intent.  They are mine. They are part of me, good and bad. They will be able to curse me and my mutant genes as I have cursed those that came before me. And we will be joined by the experience and the strength to overcome it. You control what conditions you can or want to. Their genetics was not something I wanted to dabble in, unless you count the fact that I chose their father to contribute half of his DNA.  Ever notice how bred dogs tend to get mean or end up sterile?  Nature will always try to find balance. SO although we struggle with the ramifications of our imperfect genes- the imperfect mutants those genes code for have shaped my life in such a way there is no other journey. The journey will be difficult. There are no guarantees in life- mutated or not. Some of those difficulties will be due to a mutation, but some of the gifts they receive will be too.  Those gifts might just be the key. The same science that offers the opportunity to eradicate mutants before birth holds the promise of helping them live long happy important lives.  I will try not to judge others or claim they don't love their children as much as I do because they approach it differently. You never know when these differences will intersect on a path and the friend you travel next to might be the very one you oppose and yet the journey together might just be the solution. 

Lily Kay Monkey

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