Reflections on the Past Year

Having 3 life-threatening bouts with cancer between the ages of 15-21 and all of the various treatments that came with it was intense in many ways.  There were many times that I survived situations that doctors cannot make sense of medically.  Things like getting emergency surgery on a tumor that was strangling the top of my spinal cord and shutting down my body by the hour and causing paralysis (and then regaining all function after surgery).  Or having multiple potentially fatal infections in my blood and going into septic shock (which has a 50% survival rate and that’s with an immune system) when they had already killed my entire immune system during my transplant.  Or surviving the aggressive tumor between my heart, lung, pulmonary atery and spine after I had maxed out on traditional treatments and was given a 0% chance based on cases before mine.  The list goes on but you get the idea…

Because of all the life-saving measures, my body was hit with large and sometimes lifetime maximum doses of things like chemotherapy, radiation, etc.  I wasn’t supposed to make it and everyone did everything they could to give me a shot.  Those treatments can come with consequences-if you live long enough to experience them.  For me, I read and keep myself educated enough to know that my time would come when something else would hit.  Would it be things I was more prepared for-breast cancer, heart issues, etc.? Or would it be another secondary cancer like leukemia?  Would it be something completely surprising?  I knew in my heart that one day, whatever it was, it would come.  I raced against time and accomplished much in my 10 years of “fairly good health” (for me-which still included many long term effects but was tolerable): After over 10 years of college, I got degrees in interior design, psychology, studio art and a dual Masters in Art Therapy and Counseling, I met the love of my life and got married…I traveled to Quebec, Mexico, Denmark, Italy, France, Spain, Portugal, Austria, Croatia, etc….I spoke around the country and in Europe a bit.  I was named Glamour magazine’s Woman of Your Year in 2008.  I tried to make the most of those years knowing what loomed ahead but not what or when.

My right lung had been damaged and “bad” for years-we knew that-from the maximum amounts of radiation on the right side for the tumors-but no one quite realized how bad.   And while I realized it was bad, I just thought I’d keep living with it that way.  I did not have the knowledge to know that a nasty mycobacterium was looking for a spot just like my lung to live and wreck absolute havoc.  And even if I had, it wouldn’t have changed anything anyways.  There are so many theories where these strange aggressive infections can come from but no one really knows or knows how to prevent them. 

I was grateful for the 10 years “off” where life was relatively care-free as far as health things were concerned or at least manageable enough that I could participate in everyday life for the most part.  And then the day came when “shit got real” again.  A cough that I’d have for over a year turned into a frantic call at work where I was told to go home immediately and be quarantined inside my house until they knew if I had TB or not.   It turns out I had the evil twin of TB-a mycobacterium infection that sometimes is actually harder to treat but I wasn’t contagious.  The beginning of treatment was rough but manageable.  I was encouraged that many before me had been able to maintain a school/work life on the treatment.  I felt optimistic but guarded too.  I knew enough to know that my body does not follow the anticipated path in the medical world really EVER-for good or bad.  It has led me to preface new doctors by saying “I am a really compliant patient and I do what I’m supposed to and I try my best to be pleasant.  My body on the other hand tends to have very rare and complicated things happen to it”.  I told my pulmonologist this when I met him over a year ago.  He realized months later that I wasn’t kidding.

As my body got used to the medicines, I felt a little more confident each day and my infection symptoms were lessening.  I even got myself excited about a tropical vacation over the holidays.  Even more amazing, my 4 main doctors all approved of it.  Literally the day after the last doctor gave his blessing, I started to cough up blood.  I knew this was a bad sign but no one knew how bad until my bronchoscopy.  I woke up to talks of removing part or all of my lung and there was a lesion on my trachea that was unknown.

My big serious medical event that I knew in my heart and gut would be coming was officially here.  As the days for the surgery approached, I literally could feel my body slowly dying.  I could not wait to have my lung removed.  I could barely eat and my weight continued to drop, my skin took on an odd tint, massive amounts of nasty gunk came out of my mouth along with night sweats and fevers daily.  Could my body pull off another medical miracle-or as it turns out 3 more?  Could the surgeon who saved my life 10 years before be able to work his magic again?

Fast forward to now, 8 months later and 3 intense surgeries (the first being 12 hours) and 6 months with an open cavity in my chest and clearly my life has somehow been spared again and again.

I’m still processing the events of my life and just feel grateful and blessed because I am just as baffled as anyone else.  I try my best to make the most of my “extra” time here on Earth.