Stuck in the Middle

They had just finished placing me into position on the machine when the phone rang.  It was Wednesday and I was having a bone density scan as part of my pre-transplant work up.  "We're gonna stop the scan," the technician told me as she hung up the phone, "they say you don't need this test anymore."  Weird.  She then instructed me to head to the transplant center where they'd be expecting me.  My mind began to race as I changed back into my clothes and walked to the clinic, wondering what this was about.  I had an awful feeling, do they typically cancel tests for good news?

When I arrived at the clinic I was shown right into an exam room and my oncologist entered before I even had my jacket off.  She sat down, took a deep breath, and said she had received the results from the bone marrow biopsy I had the day before.  "I'm so sorry Nicholas, but your leukemia has returned," she said, but had already figured it out.  You don't receive treatment like that at a clinic if something isn't terribly wrong.  She explained that the transplant and all remaining tests were cancelled and I would meet with her Friday to discuss what would happen next.

The biopsy showed 75% blasts, or that 75% of the cells pulled from the marrow were cancerous (compared to almost 100% when I was diagnosed and <5% to be considered in remission).  The cancerous cells have not yet begun spilling out into the blood stream (a good thing) and I am still producing healthy immune cells (another good thing), but the aggressive nature of my cancer means that the doubling time (the time it takes for the number of cancer cells present to double) is relatively short and it probably won't be long until my marrow is unable to produce healthy cells.

So I met with my oncologist yesterday and she laid out my options.  I'm not eligible for transplant while relapsed, so if I choose chemotherapy the goal is to pick a chemo cocktail strong enough to put me in remission once again but not so strong it destroys my kidneys.  I am also at an elevated risk for infection while undergoing chemo since the cavity where my left lung used to be is now a perfect petri dish.  Without an immune system to take out pathogens, my doctors are worried I'll contract a fatal infection, or residual spores from the fungus will infect my only remaining lung, or I'll catch a hospital-acquired infection, or something else from a long list of complications.  When I was diagnosed everything happened so fast and I was so sick I didn't really understand the gravity of treatment via chemotherapy and all the risks involved - I just did it because it needed to be done.  This time I had to sit in an office and listen to my doctor explain what felt like a hundred different ways this could kill me.  I understand it is important that I understand the treatment and the risks involved, but what a mind fuck.  It makes me question if this is indeed the right thing to do.  But what other option do I have?

My doctor offered me hospice, that I could spend my last christmas at home with my family and living free until the end.  Not having to go through the pain of chemotherapy or risk dying in a hospital bed while suffering through constant nausea and mouth sores.  Being able to sleep in my bed and eat my favorite meals... to taste again what life was like before this awful disease, but always knowing my train was quickly running out of track.  I can't say it's not tempting.  The idea of normalcy, even in part... That's what I want more than anything.  I can't remember what day-to-day life was like before cancer.  Knowing hospice could offer that to me makes it hard to ignore.  But then I consider what I wanted to get out of life:  to become educated and turn that education into a meaningful career, to find the love of my life and start a family, to teach my children and watch them grow, to own a house, to buy my dream car, to see the world, and to die old and complete, knowing I had been given opportunities to reach my potential.  But hospice leaves no room for any of that, and although cancer may rob me of my dreams in the end, how can I simply give up?  It is unacceptable, and thus I am left with the one option.

I'm supposed to call my oncologist Monday morning with my decision on treatment.  I guess I know what I'm gonna do, I've just never been so unsure of something.  I guess I'll just continue to do what needs to be done.