Thursday, March 15, 2012

I cannot take Lily anywhere without someone reaching out to comment or touch her amazing curls. As she also likes to dance her way through every situation- be it walmart or doctor's visits- she has been likened to Shirley Temple on more than one occasion. I love her curls. LOVE them. I hate trying to tame them, wash them, and brushing them is just a pain, for everyone involved, but they are a part of her. So today when she insisted on having them shorn off, I was taken back. Back to three years ago, fighting through tears as I shaved her tiny 4 year old head so we no longer had to watch the beautiful curls fall out. She rocked bald then- it never bothered her not to have a head full of bouncy curls- she was still Lily. Just as I realized then- it occurred to me today- the thought of cutting her hair was my issue- not hers. I needed to trust what she wanted and help her in this journey- remembering a time, many many years ago when I demanded a Dorothy Hamill do and spent years unable to set foot inside any hair cuttery without a panic attack.  Just like 3 years ago- she was comfortable in her choice, even if I was not. My heart literally hurt as I watched the dark blonde ringlets tumble down  to the floor to be stepped on without care. I faked 2 phone calls and took another to walk outside to catch my breath.  I kept reminding myself it was hair, it was only hair. I reminded myself that 3 years ago, I hoped she would just make it to 5 and just yesterday she turned 7. This was only hair.

Every year, right around now- St. Baldrick's events roll around. I never understood them. I've supported many, been to one, but when asked if I am shaving my head- respond- nope- I'm sure I'll get my chance- such is life when you have a hereditary cancer syndrome.  It mystified me that people want to do this, that they have this choice. It bothered me immensely the year Lily was bald. I hated that everywhere we went- her little noggin elicited such pitiful looks, some would avert their eyes - others would give you that knowing nod and every bit of it hurt. It hurt to be on that end, it hurt to be pitied- it hurt to know there wasn't a damn thing I could do about it. Yet Lily never noticed, the looks, the pain- that was adult business- kids would just ask- why don't you have hair? It bothered me that an entire group of people would shave their heads when they were perfectly healthy and did not have to. But then I looked into where the donations went- to really good programs and research efforts. And people really have to step outside of their comfort zone to do this- and it costs next to nothing to do. So many organizations put so much money into overhead costs, printing, branding and whatnot- all of which is not going into the pockets of researchers looking for a cure or on the head of a little munchkin fighting for their life. It changed my whole outlook on these fundraisers. I really respect St. Baldrick's and those who are brave enough to shave their craniums to stand beside our littlest fighters- rocking bald.

As Lily's curls fell around her today, I again fought back tears. Those curls were more than just hair- they are 3 years of healing, 3 years of growth, they represented everything we fought to get back from 3 years ago. We cut her hair then so we didn't have to continue to watch them fall out bit by bit. Today she chose to cut them, because she wanted to. It was when she sat there grinning ear to ear that I knew this is exactly where we are supposed to be.  Once again it took a brave little monkey to show me something I had overlooked. When she turned to me I saw nothing but her big green eyes and a huge dimple, both which were usually obscured by gigantic curls. For at least 2 of the past years I fought with her daily to pull her hair back so I can see her beautiful face- today she won that fight- but then again so did I.

Sunday, March 11, 2012

LIVING with Li Fraumeni Syndrome

Li Fraumeni Syndrome is something I have lived with since I was a child. It didn't have a tough to pronounce name back then- we just called it cancer. Then we called it p53. It was our family joke- no one knew what it meant, but it was our bond. It changed our dynamic, reduced our numbers, left scars and broken hearts in it's wake, so we turned it into a big irish wake. It also gave many of us an immense strength, unsurpassed bravery, and a compassion that is unparalleled.  It is part of my history, something to look for in the future and really tough to LIVE with. Some has asthma- and face many episodes of not being able to breathe- living with LFS is not like that. It can be- it knocks the wind out of you and threatens to kill everything you hold dear in record time- but there are times when you can breathe just fine. LFS is like being one of Dr. X's mutants- you spend a lot of time waiting to see what your super ability might be as a trade off for the mutation. So far the only increased power is the ability to field 10x the normal sense of urgency. Yet when you meet someone else with LFS- you get a feel for what the trade off is- you are in a select group of people with a strength and sense of humor like no other and I am grateful I get to know them.

Most days you feel like you are in the middle of a lightning storm, feet firmly on the ground- you look perfectly rational except you seem to be holding a kite with a metal key tied to it. This could be a sign of absolute genius or mental instability and you won't know for sure until the lightning strikes.  You could be brilliant, but you might be a crispy critter- it all depends on if radiation treatment is called for or not. Every headache threatens brain tumor, the flu hints at stage IV stomach cancer- but could also be a brain tumor. Is this a bug bite or sarcoma?

So you feel like an evil scientist after reading more than your average bear on every cancer known to man, being ready for potential symptoms and signs- you start the experimentation process. YOU are the experiment. There are no set protocols to screen for the plethora of cancers that could befall your meagre human form and doing the individual scans and tests to cover every body part that might be affected takes 2 months- I've done it. I found out a few things along the way- like I am clausterphobic. VERY clausterphobic- which is not good unless you consider that mri machines look like gigantic powdered donuts and the sight of both now gives me cold sweats-it might be a good diet plan along side the go lytely(or swiftly and furiously) and the fasting for bloodwork and scans- but somehow, through great dedication and perseverance  I still manage to keep my weight up. I'll blame it on the other positive side of the gene pool that gave me this mutation- the stress eating gene.

 If you think about it- what doctor in his or her right mind would stand behind so many screenings and tests in a person who has an 85% chance of getting cancer in their lifetime- machines are bound to be run by humans- if the machine doesn't miss it- the human might. Good doctors will.  If you support the screening and the cancer isn't detected- who's neck is on the line? The only person who really loses here is the LFS person. If you recommend that LFS folks dedicated a huge chunk of their already limited time on this planet to lying in cold sterile rooms that make awful noises while enduring sometimes undignified and uncomfortable procedures- with the hope they might catch a cancer early enough to treat it, provided that it is even treatable- does it make a difference in the overall survival? Sometimes hope is the biggest key to survival and I've found that depends on the person. Some people want to know and spend a lot of time taking control of the situation and regularly get every scan imaginable. Some watch the signs closely and go into a provider at the sign of trouble. Some just want it to go away and wait to the very last second and often it's too late. Only one group of these people will a set protocol help to find their comfort and control in a bad situation. But the point is it will help people, so why not?  Because they don't know if it works. Technically ALL cancer treatments are still experimental and few are PROVEN to work. Patients are presented with information and given the choice to undergo treatment. It's a game of odds. I know LFS is rare , it will be next to impossible to get the sheer numbers for numbers sake to "show" that screening works. But the odds are in favor of survival the earlier cancer is detected- this seems like a no brainer to me.There are so many negatives to this situation- let's harness the positive. Let's encourage our best odds.

It's tough enough to have a family history of cancer. It's tougher being told you are probably going to get cancer and not only once but many times- but that's only if it's not one of the bad cancers because those will kill you quickly.  I see why no one wants to say anything- it's a no win situation- so take it back old school. Forget the bells, whistles and fancy names. You have a family history of cancer. Ok, let's watch you closely for known cancers in your family- and take into account other possible cancers. Then you have to trust your gut.  You have to know your body and what is normal and pay attention to things that are not. When Lily had a lump on her leg, my gut told me over and over again that it was not nothing. I've talked with enough LFS survivors who have said the same thing- some lumps didn't bother them and others they just wanted out and those ones usually end up being some rare fibrous or atypical something or other. So when it comes down to it- the best screening method is you. And then you have to fight to survive which in the case of LFS is sometimes a fight to get screened and then a fight to get that paid for. But you would be hard pressed to find many people who won't fight to survive once they have been diagnosed with cancer, I'm saying kick it back a notch and fight to survive before you have cancer. It's not easy, no one ever promised it would be- but it will be worth it.  It is possible to LIVE with Li Fraumeni Syndrome.

Lily Kay Monkey

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