This has probably been the longest gap in between my posts here.  For those who sent me good wishes this past week for me and my scans…..thank you.  They worked.  No change from the scans I had 6 months ago.  Scan day is always an ugly reminder of what I am up against of which I do not need reminding as logic, statistics, and my medical team are quick to point out how tenuous my situation remains.   After all 5 years into stage 4 melanoma was relatively unheard not too long ago.  Which bring me to the topic of survivorship.

I am not a fan of the word “survivor”.  Survivor is not a word I apply to myself.  I definitely do not identify with it at all as cure is not a word that is used around me in my situation .  I think the goal of any cancer patient is to get as much life back as possible after a life altering diagnosis.  However I feel like I have spent the last 5 years chasing stability in a situation that is inherently unstable.   I feel like I am tempting fate if I say I’ve survived it.  At times iI am not sure I deserve to carry the title because I didn’t suffer enough to deserve it.  I prefer not to define myself by my cancer diagnosis or status.  I feel it erases the experience of those who still have or will die.

Cancer yields incredible perspective at incredible costs. Aging has eventually given me the gifts of softness and illumination. Cancer is definitely humbling.  You stop chasing the big things and start valuing the little things.  Alone time, enough sleep, a good diet, long walks and quality time with people.  Simplicity becomes the ultimate gaol or perhaps just the default because honestly you have little time or energy left for much else.  From the moment you get the news time is diffracted, re-assembled,  obsessed over, pined after, used, wasted and consumed like there is no tomorrow because there might not be one.  You are living a borrowed existence so we are told to carpe the diem out of life.  Past, present, and future merge into one and time accelerates, It feels thick and heavy but it also stands still and feels weightless.  

I have had tremendous outcomes from treatment and a stable prognosis for a while now.  But somehow everything I do feels like I’m just biding time until the other shoe drops harder.  Living with a cancer diagnosis is such a game of mental gymnastics.   You go through this whole mortality acceptance thing and then you continue to live which is more than a little empirically confusing.

Some disease remissions are durable enough to be discharged from oncologic surveillance.  Mine is not one of those.  I was told at this round of scans that I will be on a six month schedule for the unforeseeable future unless there is disease progression then we will switch gears.  One thing I do know for sure is oncology is amazing at saving lives but terrible at maintaining quality of life. 

Back to the word survivor.  I always instantly think “ am I allowed to call myself a survivor?”  Sometimes I feel like my experience isn’t as valid as others. I feel like I need to rationalize my cancer story.  It makes me yearn for the day I will be DONE.  But as I mentioned before I am still on active surveillance, still have lots of labs, scans and many appts to manage.  I still deal daily with collateral damage of “surviving".

I don’t always want to be strong or keep saying I survived.  I don’t want to be a person to be admired for walking through hell.  I am just a person with a history of cancer.   The fact is I never fought my cancer.  I made a series of choices with the hope of extending my life.  It was choosing the possibility of life over certain death.  It was hope and god's mercy.   I want a life I can live not one I have to survive.   I am one of the lucky ones and when you are dealt good cards (even in a rigged game) you should play the heck out of them.  I am grateful that for the next six months the biggest thing I have to worry about is what to do about not ever having had chicken pox, whether or not to get the live chicken pox vaccine and/or shingles vaccine and what that would all look like in regards to my medical history and if I need to get a few units of blood drained. 

 Even though I do not love the word “survivor”  I will use it anyways because I sure am grateful to be here….I will remind myself when I look in the mirror that this is what defying the statistics looks like.  Grateful doesn’t come close to the feeling I have for all of you who know me, love me, pray for me, and fill the gap in a quiet kind way.  Until I find Jesus in unmistakable form out on the street I will let those simple touches, words and glances from all his people carry me into the unkown tides of life with a smile and a battle cry.  

Much Love,

Kristi