Sunday, October 23, 2016

Awareness, Advocacy and Exhaustion

Pink,  Pink, Pink. Kids wear pink to school, football teams and brands sell all kinds of pink nonsense - very little of which goes to help ladies like me. Some ladies love the pink, buy the pink and stand midfield and get a cheer- so for that sort morale for these survivors and fighters, that is a good outcome. Pink bracelets that cost $25 and $1 goes toward something vaguely breast related.

Awareness is important- and paramount importance on an individual level. As the president of an organization whose mission is supporting those with a rare hereditary cancer syndrome called Li-Fraumeni Syndrome(see- so I said the syndrome name there- put it out there so maybe one person will read it and go- hmm how the eff do you say that..)- awareness is something that is both part of my job and that I personally invest an inordinate amount of time in.

With LFS, our risk of cancer is close to 100% in our lifetime. Lifetime is 60-70 years too by the way. It's 50% by age 30.  In my family- dead zone was 43. Of course my aunt and uncle are nice enough to survive into their 60's which gives me hope. Then sometimes I sit and ponder that we lost my brother at 16 and my cousin at 8 so years lost to the damn disease pretty disproportionate there. If you look at it in years lost.  Quality life years. Kids, taken by the nasty disease.  So with awareness, it's getting better with detection for our kids(I am putting it in understandable terms- "better" is on the scale of shit soup to shit sammich- at least with a shit sammich you can try and grab it without it getting all over you emphasis on try.) Early detection "buys" us time. Time with cancer- but time. Someday we will be better and nail this prevention thing.

Before I knew for sure I had LFS- which was officially accomplished through a kid having cancer and a mailed off blood sample genetic test in 2009. I knew I had LFS in my family. We had a shit ton of cancer. So I went to my annual physical exams, I had weirdsies looked at- spent many a night wondering if lumps were going to kill me, or if the headaches were tumors. When I was 16, I drove myself to an MRI situated in the parking lot of the Aurora Hospital because my brother was dying of a brain tumor and I had headaches ALL the time. Go figure. Taking all advanced courses, brother dying, one of the toughest times socially- but at least we ruled out brain tumors as a cause. One would say- what are the odds of a family having 2 cancers at the same time- much less 2 brain tumors- well you've never known a mutant family because it is horrifying how much it happens. Hell for 3 weeks of my first pregnancy - before I knew I was pregnant I was convinced I was dying of cancer. That is livine LFS, living with hereditary cancer. The first thought- it's cancer. Oh no I might just be preggo. Well shit that's not a big deal...That's a temporary normal condition. Years later, that child started having symptoms. Oh hell the kid is wasting away- shit what if it's cancer- oh it's just diabetes- at least that can be treated....

So while many put on their pink shirts and race their pink races- good changes have been made in the world of pink and breast cancer. Which is awesome. But you can live without boobs. You can. It's not fun, especially if you are a young woman. I of course was fortunate to use the hell out of my boobs before chopping one off- so I have a different perspective. I completely feel for young women who get shackled with this bullshit. Like kids getting cancer- there is something very wrong with young women getting breast cancer- genetics or not.  In LFS- we see women in their early 20's with breast cancer. Some have a family history of breast cancer- others are the very first in their family. So awareness is making a difference in that women are aware of their bodies and being good about screening- we mutants have to be extra dilligent- BUT what about the mutants out there who don't know they are mutants?.....awareness. See the conundrum. Because LFS is going to effect way less than breast cancer and it effects WAY more body parts than just the breasts- parts you cannot remove easily- BUT breast cancer is a HUGE part of LFS. Also a p53 mutation- which we (mutant sorts)have in all of our cells and is why our bodies don't fight cancer as well as it should  "Normal" non mutant cancers(just the toomahs)  have mutations in their cells too- and 50% are p53- driving their cancerness. SO being aware of p53 mutations has a much bigger impact on the overall cancer world than just my merry band of mutants- digest....

I teach my kids to be aware of their bodies. Lumps, bumps, headaches, anything weird that is changing or not changing but weird or just seems off. ALL of our cancers were diagnosed because I had that feeling. The pediatrician thought precocious puberty for a 3 year old was reasonable with Lily's adrenal tumor.  Neither one of our sarcomas were taken seriously. I only had a local anesthetic when mine was removed- 2 flipping students in the room and me repeatedly saying please take wider margins. But you will have a scar. Rather a scar and arm and living.  And then trying to get a breast MRI as a dependent in a military hospital even though you have a documented high risk and feel a lump. Well when you get diagnosed with a sarcoma in your arm suddenly BOTH MRI machines are available to you. We've followed several things in multiple children. The stress and what ifs suck. Fortunately most are just normal weirdish things that if we were normal hahahahaha we wouldn't be bothered with. But we have to be bothered because if we let the one get away- that is the difference between life and death for us.

Which brings me to advocacy. Having a cancer syndrome that's rare that no one knows about means CONSTANT advocacy. 1) can you spell that? Li what? 2) I've never heard of that   or We studied that in med school do you mind if I bring in all the residents to talk with you?  to 3) which I have never heard but many of my mutants have- that isn't a thing. Yes, yes it is. First of all we are sensitive to radiation. Meaning- just Xrays and CTs can cause damage in our already mutant tissues. So mammograms for early detection aren't the greatest option all the time- the more ways we damage our cells- the greater chances of tumors developing. Hence the breast MRI. We cannot avoid radiation- it's all around us. We do the best we can. I opt of the full body massage at TSA. We dont get dental xrays- because last time I checked those rays go directly to your nugget and unless the person operating the machine has a better understanding of it than I do- not gonna happen.  Advocacy. Doing what's right for you. It takes thought and effort. It is exhausting and it matters.

When you have LFS there are different considerations. We call it shark closest to the boat.  You have to deal with the immediate threat. SO alot of times you have to really do something you don't want to do to even get to the point you can consider the down the road consequences. There is no clear cut answer and the choices just fucking suck. Triage. So picking between 2 politicians- although not a great choice and disappointing is not a life and death crisis for me.  Shit sammich, shit soup- pick your poison, let everyone else pick theirs. Shut up about it and live with the consequences. Either way it's gonna be shit you have to get down. If you don't like it- DO something- just bitching is NOT going to change anything - unless you bitch to the right people and then we call it advocacy- figure out the right people- FB is NOT it.

My current shit sammich- the fucking Brain MRI. Which was supposed to be the first week of October. IS. NOT.YET.SCHEDULED.  While at one of my many adventures to Tripler in September, while Phil was in Guam, I ventured down to MRI to schedule in person. Because calling to schedule them is like an olympic level game of phone tag.  And they know us-- so generally they have a little pity on me and TRY to schedule appointments.  We are lucky to live by a military treatment facility(MTF). We have access to much better care and less headaches from being referred out. When we get referred out there are bills and insurance claims and none of that ever goes smoothly and is a time committment. So I prefer the limited bells and whistles of the MTF- brought about by soooo many complaints of wasted tax dollars...but they are your tax dollars too so well thank you and I cant complain.  I love the looks of horror when my civilian friends  and family accompany me to the hospital. Helloooo 1960, BUT I am alive and here so #1 objective is a success. Dang I digress.

So the Radiology dept is down a machine. They are always down a machine. There is too much business there for what they even have normally. And different machines do different things and well MRIs take longer than CTs, xrays yada yada. So dependents get referred out. Unless its a stat or urgent which unless I say I am having symptoms- doesnt make me. Yes, Brain tumor in fucking dependent head takes back seat to active duty owie muscles. And although there are times I am not opposed to playing up symptoms to get expeditious service(ER hell)  I will not do it for something that will land me in the OR or when its not in our best interest. So the nice lady who scheduled all my kids' MRIs explained  to me that I was referred out. Did I not get notified by mail? Haha. awesome. no.  Which was fascinating because My onc and neurologist both discussed this with the radiologist and for continuity of brain toomah care....I should be seen there. BUT I never GOT the referral. In the mail. She is appalled. Nothing she can do- radiologist says no-tries calling neuro- he's in surgery- kinda more important and someplace I dont want to be so I will figure it out. I call neuros assistant who we all know is the go to person- explain the issue. She will call back. She does not call back.

Then life hits like a mother fucking(excuse the language but highly appropriate here) truck. Refer to September hell. Normalish hell on the homefront with added chaser of super hell- but on top of me trying to advocate to see what the fuck my brain tumor is doing so I can maybe plan brain surgery around my husband's ever so amenable schedule(insert biggest effing sarcastic font available) and the lives and times of 4 kids and their medical and life. Then we are all completely emotionally drained and throat punched again with how life changes in an instant(well aware- these fucking MRIs also hold a slice of that intellectual power...scanxiety much). I am emotionally drained. Phil is emotionally drained and although rationally I know I need to get my shark teeth up in the MRI scheduling and make it happen- there reserves are gone. Depleted. Moving expeditiously toward negative.

Advocacy. Time. Energy. Resources. All in limited supply right now. I hunt down my online password. To see if there is in fact a referral that I never got in the mail. There is. I call neuro assistant who is now on leave for a week. So at that point I triage and am going to punt it to my onc who I will see at chemo the following Monday. So onc and nurse go all MRI wrangler for me and have the exact same result I had. So we are back to shark-get MRI done asap -which will have to be referred out- which not as ideal for comparison as in house and risk repeating or wait 6 more weeks to be seen in house(and probbaly get bumped...) So Phil and I ever trying to plan our schedule(futile efforts)  say let's schedule the 6 week appt now and we will schedule the outside one. They won't until we have the outside one done..I cant even. So the next day I call to schedule. The outside hospital never got the referral either - I have not heard back. And there we are.

So Tomorrow I will again advocate to get something done that is imperative to my care- that I don't want to do. Because regardless of how much stress this scan causes me- the result is not going to change. Me not having it doesn't make anything go away. Now I might have to deal with bills and such and hunting down results and we will compare them and say we need more information and rinse and repeat. Is it the hardest thing in the world? Nah. Comparatively to what we have to do and have done and have been through- it is teeny tiny beans. But it is one more thing on the cumulative stack of things. And one more thing that adds stress to my world and takes precious time away from anything that resembles down or "free" time.  And I've noticed my compassion reserves are depleting and that is very very hard for me. Because when things get bleak for me- I throw myself into helping others- because there is always someone who could use help. Between my energy and the emotional drain, I've had to pull back and then the depression monster sets in and he carries all the loss and pain of the past in this big ominous cloud balloon.  And it's lonely. And hard. And I hate that I have so many friends going through extremely tough things and I am limited to help physically or emotionally. And I get a little negative and angry and I don't like to share that - as real as I fucking am- there is enough negativity out there. So that is the quiet. Not me hiding anything except monsters of negativity and sometimes that takes a lot of effort. It's exhausting. Wish some others would be so kind.

In other news- our oven finally arrived- evenly cooks bacon and cookies without the added fire hazard risk and I have an operational washer and dryer.

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Lily Kay Monkey

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