Navigating Paradigms

I’ve been thinking a lot about death lately.  At least I was.  Nothing like a trip to the doctor to instill dread and fear into one’s depths.  Who looks forward to a trip to the doctor?  I assume not many.  Why is that?  If we aren’t feeling well or are experiencing grave illness, shouldn’t we be excited about going to see someone who will make us better?  I would say the answer is yes, right?!  So I repeat, why do the majority of us dread going to the doctor?  Perhaps you can sense the foreshadowing in a loaded question…

Those that have been following my story know that after my trip to Tijuana in June for Bio-immune cell therapy I have had a relatively energetic and enjoyable summer.  A strict diet, supplement protocol, and arthritic symptoms in my joints and tendons have made leaving the house a much more tedious endeavor than usual, but it has been worth it.  I put off a pending bone marrow biopsy to prolong summer bliss in Montana, but upon returning it’s been time to face the music.  Larkin is back at work enlightening 7^th graders to their mathematic capabilities and I am again facing the problem of malignant cells crowding out my healthy ones in an apparent effort to push up daisies. 

In returning I faced the drill and a fifth hole in my iliac crest to obtain the most crucial information in this process, the leukemia blast count in my bone marrow.  Following my second round of chemotherapy in early May my blast count was at 17%, dismal results in the eyes of my oncologist.  I was the second patient in her 25 years to not experience a remission after two rounds of chemo.  “You are quite a unique individual,” she commented at my last appointment.  We had been discussing my latest biopsy and its 19% blast count reading.  She explained that she’d expected my counts to be in the 80% range due the acute nature of my diagnosis.  “I’ve never seen a case like yours and want to refer you to the specialist at University Hospital.”  I know I didn’t need to, but I reminded her about my trip to Mexico and the treatment there.  Giving it very little credit she suggested, “Whatever they’re doing seems to at least be keeping you steady.”  I agreed to a trip to Denver desiring another opinion with hope that the science-based institution might have experimental procedures for a case as “unique” as mine.

The question of my blast count is an interesting one.  Has it remained relatively steady or did it drop after my Mexico treatment and is again on the rise?  A rising count would deem more immediate attention, nevertheless, there is no question, more treatment is necessary.  According to a number of opinions it seems reasonable to assume that the semi-debilitating issues with my joints are not cancer related.  However, I have felt more recent bone pain and tingling.  It is not severe, but it is a sign of the cancer process and warrants personal concerns.  It is time to make another move. 

With resistance and concern whether the trip would be worth the cost and time, I packed up and drove to Denver last week.  This was my second visit to University Hospital, though time on the road is unfriendly to my body, I was happy to be driving as opposed to the last time when I was delivered.  I had requested a phone consultation but was rejected due to the “impossibility” of it.  So, I found the appropriate check in, deposited ten vials of blood and was soon seen by the doctor.  Five minutes into the discussion I literally felt the weight of dread sink into my body.  I breathed deeply and reminded myself that I was only gathering information and asking questions.  No need to get emotionally involved.  Easier said than done…  Like a tape recorder he repeated the same treatment plan that I was already aware of and relinquished any hope of experimental treatments.  He listed the five major potential complications related to an allogeneic bone marrow transplant, the arsenal of medications involved, and the glaring reality that if I could not achieve remission via chemotherapy there would be no point in moving forward with a transplant.  He repeated the statistics precisely as my local oncologist had.  At this point, I was looking at a 20-30% chance of remission after a “salvage” round of chemo followed by a 50% chance of a successful transplant.  And, the interpretation of “successful” is certainly open for discussion.

So, as a past middle-school math teacher I quickly figured it out in my mind.  If I have ten marbles and three of them are green (30%), and out of those green marble only half would survive a transplant, and the suffering and lasting damage that would come from those treatments… (can you see where this is going?).  To go that route I would have to lose my marbles!  At the point of our conversation where he inquired about my “alternative” treatment in Mexico I divulged what I had experienced.  And, like a well-trained product of the AMA he retorted the same canned response every other allopathic doctor has.  “The problem with these alternative treatments is the lack of scientific basis and I’m concerned they’re just trying to take your money.”  Problem is, like the rest, he had no interest in looking at the scientific-based treatment procedures I had copies of in my folder.  And yes, it is expensive.  But, if you consider a two-week hospital stay inclusive of all treatments with organic meals at Angeles Hospital was less expensive than just room and board for my first two weeks at St. Mary’s Hospital, it leaves one wondering who the real money grabbers are.

I wallowed in fear and dismay for the next two days planning my funeral.  What words I would write so my loved ones would take the occasion to celebrate me and not mourn throughout the depressing occasion.  What music would I want played, I keep putting off making that playlist.  There is that favorite Ben Harper song that always makes me cry and Soulshine by Franti ‘cause that’s my song…  Fortunately, I was rescued by Dr. Perez, the head oncologist at Angeles, during our scheduled phone consultation while on my way back from Denver.  Intelligent, optimistic, enthusiastic and personal; talking with him about my blood counts and biopsy and their treatment plan brought hope and energy back into my being.  Seriously, beyond business, he inquired about personal concerns, shared success stories of other leukemia patients he’s treated, and shared tangents on being a husband and father.  In my own mind I’ve questioned how real the optimism is that the doctors at Angeles always offer.  I’ve realized, it doesn’t matter.  They understand what a potent remedy a positive attitude is and they instill it in their patients.  They realize all aspects of curing disease and are not policed by a pharmaceutically-based governing agency.  And, they are not trying to take my money.  Dr. Perez suggested an outpatient approach to my next visit.  First, he wants to keep me out of the hospital as much as possible due to my low white blood cell count.  And, second, you can imagine the price difference between staying at an affiliated hotel as opposed to a hospital room.    

Needless to say, I am in a position where my choices are clear.  I can let my insurance pay for a debilitating treatment, filled with pain and suffering, with slim odds of success.  I can continue to navigate my own treatment with diet and supplements and slowly add songs to my before-mentioned playlist.  Or, I can figure out how to pay to go where there are doctors who are using cutting-edge science, who understand how true healing works and who truly care for the wellbeing of their patients.  That’s where I am going, and I am going next week.  My parents are onboard and my mom will be joining me on the trip to Mexico.  They have offered to take out a loan on their house to make it happen; it hurts to think about them going to that extreme.  I am asking for help.  If you can donate I express my gratitude in advance.  I am also attempting to orchestrate fundraisers with the help of friends and family.  And, as I state on the heading of my blog, I spend time writing and sharing my process as a way to educate and give back.  Please read the top of my blog and check out the fundraising links.  With humility and love I thank you for reading what I offer.  

PS- I am holding a fundraiser this Thursday night.