Thursday, September 14, 2017

Reality vs. Hope - Where do YOU live when you have a likely incurable disease?

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I cannot claim to have a first rate intelligence, but I do find that as it relates to cancer and my disease I am able to hold not just two but three opposing ideas in my mind at the same time and still retain the ability to function.

The possibilities:  The cancer I have is rarely curable and is likely going to kill me within the next few years. My cancer can be considered chronic and that if treated each time it recurs, might extend my life some 10 or even 20 years (after which point anything can take me down).    Though rare, it is possible that I am one of the few who go through the necessary treatment plan and come out totally cured, never to have to deal with cancer again.

So with these three distinct possibilities present I find myself dwelling in one or the other, examining the "what would that be like" and "how do I manage in each scenario" and sadly "what can I do to best help support my loved ones regardless of outcome"?

I tend to lean toward the "within the next few years" scenario and spend a lot of my thinking there.   Since my journey with this disease began, I have had major setbacks and minor wins.  After nearly dying from an acute bi-lateral pulmonary embolism in January, for which there was no easily identifiable cause, we began exploring other conditions (hereditary clotting factors, heart problems, etc).  When those proved non-contributory, we went for the more obtuse causes and that is when we discovered I had cancer.

At first it was thought to be endometrial cancer.  Scary enough, but the mortality rate for this kind of cancer is much lower than it is for others so fear and concern were minimal. After surgery to remove my lady bits, it was discovered that I have not one, but three kinds of cancer  - endometrial (Stage 2C) and ovarian -both serous ovarian carcinoma and mucinous ovarian carcinoma - Stage 3C.    The prognosis is not great, but there is hope.  30% of women with my kind of diseases live for 2 years.  With optimal surgical results and de-bulking any tumors and a chemotherapy regimen that works, I have a chance of living beyond those two precious years.   

So we risked this first of two possible years undergoing surgery, chemotherapy, testing and dealing with consequences of poisoning my body on a weekly basis for nearly 6 months.   Despite all efforts to keep everything as minimally impactful as possible, there have been complications. For example:
I have not yet fully rid myself of the embolism in my lungs and the DVTs in my legs that occurred in January. Despite being on blood thinners and anticoagulants since then, I have developed new clots in odd places -  in my arm and just recently in my jugular vein.  I may not eventually succumb to my cancer, but instead die from a clot thrown to the brain or heart or lung. At least now I have options. 

On the "yes, you may indeed survive your cancer" side, things are looking good.  My cancer marker has been steadily reducing and may well hit the "normal" range prior to the end of chemotherapy.  If not yet "there" it will be darn close. When chemo is over (October), I will have the standard CT/PET scan to see if any cancer remains and if not, I will be considered in remission. This will be a big relief to family and friends.

Remission that lasts 2 years is considered good news in my case and anything longer than that is a gift (70-95% of women with ovarian cancer at my stage with no complications experience remission within the first two years). Remission that occurs sooner is an indication that I will NEVER be cured and will need to treat my disease as chronic and on-going.  It means a life of intermittent chemo treatments, regular doctor visits and exams, testing and so on.  Manageable yes, desireable - NO.  Should that happen, we will have to discuss what quality of life means and how we wish to proceed...thoughts already dancing in my bald head late at night and being sorted slowly over time.

I'm certain there are things I've yet to experience with my cancer that I cannot yet imagine and I'm certainly one to believe in the miraculous, so for now I hold two distinctly different thoughts in my mind about the impact cancer will have on my life..

1)  Cancer will surely kill me and likely within the next three years.  I need to be ready and help others be ready for that. 
 
  -or-

2)  I will beat this cancer.  I am stronger than even I can imagine and three years from now I will be writing a book about how having cancer changed my perspective on life, leading to new and wonderful opportunities for a bright and health future.  

Which way will it turn out?  None of us can know with certainty (yet) so in the meantime, I hold two (or three) distinctly different thoughts in my head and function as close to normal as I can.   Does that make me a genius?  No (sorry F. Scott) - just a woman with a potentially fatal disease trying to plan for an uncertain future. 




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