Perspective

November 6, 2015

D-Day is upon us.  Today we got re-admitted to the hospital to start the transplant process.  I'm a bit anxious, a bit scared, and mostly ready.

 

 

Ready is a confusing word in this context, though.  It's confusing because there's nothing to do to prepare for this.  I don't have to actually do anything except be present.  In every other context in life, getting ready for something involves some sort of preparation process.  If you're getting ready for work, you shower, shave, pick out a shirt, maybe iron it if you're feeling particularly ambitious, and you're off.  

 

(Above:  One of our engagement photos from earlier this year by Jessica Higueras)

 

If you're getting ready for an exam, you spend hours, days, weeks, or months studying for it.  You go to bed early the night before, and you eat a good meal that morning (at least I'm told this is what good students do).  Whatever the case, when you're getting ready for something, the amount of effort you put into preparing for it directly correlates to your results. 

 

But here there is nothing I can do to prepare.  There's nothing to study, no decisions to be made.  All I have to do is show up, allow the drugs to be pumped into me and the blood and bone marrow to be transfused, and then wait ... wait to see how my body responds, and then wait some more to see if and when the side effects, reactions, complications, and infections arise.  

 

This is a process and, like riding a train, I'm either on or I'm off.

 

(Above:  Matt doing his daily exercises during our two weeks of freedom, trying to build as much strength as possible before the transplant.)


In nearly every other major life decision, I've acted like an engineer.  I gather as much information as possible before acting.  I try to define my outcomes -- positive and negative -- and the weight of their risks relative to the goal.  My feelings are mostly irrelevant because I've never believed that I could trust them.  Perhaps it's an illusion of control, but I try to turn everything into an intellectual process.  

 

Cancer, however, is not an intellectual process.  Maybe that's obvious.  When I was first diagnosed, Dani and I asked the oncologist, Dr. Bartels, not to discuss our survival rates.  We were -- and still are -- determined to beat this.  As far as we're concerned, our odds are 1 of 1.  There's no if I beat this -- there's only when.

 

In addition to avoiding statistics, we have done no research on my cancer, the donor process, or the complexities posed by my cytogenetic diagnosis.  We listen to our medical team, but they know about our "1 of 1" philosophy.  This can stifle some of the information flow, but we don't care.  Knowing the failure rate of transplants, the reoccurrence rate of my cancer, or the likelihood that I may die won't change the fact that we're on this train and there are no stops.  There are no decisions to be made.  Additional information won't affect my behavior.

However, it can affect the one element of this process that we can control: our attitude. We have to stay positive.

(Above:  Walking around La Jolla Cove, enjoying the fresh air and beautiful views, and getting our daily exercise pre-transplant.) 

 

The next 4-12 months are going to require a relentless sense of optimism.  One of the social workers described recovery as a shuffle: two steps forward, three steps back, one step forward, one back, two steps forward...  

 

I will likely feel terrible (sick and lacking energy) for the first two months.  At some point(s) I will get sick enough to return to the hospital.  It's not a matter of "if" but "when".  I will be confined to our apartment for months until my -- correction, my sister's -- transplanted immune system is strong enough to handle the myriad of germs that come with being in public.  

 

I could go stir crazy, pout, melt into a lazy puddle of daytime tv, and sleep a year away in a spiral of apathy, OR I can put my energy into getting healthier, being productive, and setting goals for life after cancer.  There is no choice.  I'm on the train.

 

 

(Above and below:  Our pre-cancer life that we're fighting so hard to get back.) 

 

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