The Good: So, what now? I had my clearance appointment with my bone marrow transplant (BMT) doctor, who again is one of the best under whose care I could be.
He was pleasantly surprised at how much progress I've made since he last saw me (a few days after discharge in late March) and how much stronger I've gotten. I look good! I have good energy! I'm no longer looking frail and weak! I'm still young, under 55!
Yes, I have made considerable progress, gotten stronger, put on the weight I'd lost, gotten my hair back, keeping a positive attitude as much as I can, and leaning on my faith every step of the way.
The Bad: Well, maybe it's not really bad, but getting stronger comes with the news that I can now handle total body irradiation (TBI), which I was sooooo happy to skip when I saw it wasn't on the schedule.
What this means: a mixed bag. It does reduce the chance of relapse after BMT, improves engraftment, and it does attack any potential cells that might have started to grow in my central nervous system (CNS), though that was negative when I had my lumbar puncture and a dose of chemo was administered. It does increase the chance for other cancers and cognitive issues down the road, though I'm told that is minimal. The risk/benefit analysis comes out higher on the benefit side.
How much higher, you ask? Well, what a great question. And here's where things get tricky - there is NO data. None. Zero. Zip. Especially considering that whatever limited data there might be is all lumped together and not segmented - age groups, physical status, comorbidities, cytogenetics (mine are not good), and so forth.
My daughter asked me, if there is no data, how do they know there's an actual benefit? Smart girl. I'll be asking the radiation oncologist that.
The Ugly: Radiation will suck. I will be admitted two days earlier than anticipated. I might lose my hair again (ok, that's just an inconvenience and not a serious concern). Side effects are the pits, and I've pretty much coasted so far (let's not bring up c diff, that was a totally different ball of wax). I will be in the hospital at least one more week longer than anticipated after BMT. Relapse is still possible.
The Balance: I had my pity party yesterday. Many tears flowed, several tissues were used, and there were moments in which I felt almost nauseous. Could I live with not going through radiation and not having tried everything I could to fight this? Can I put aside the constant question of whether the leukemia will come back, waiting for the other shoe to drop? Can I buckle up and go through radiation?
No, maybe, yes.
I am physically stronger than I was and emotionally stronger than I think. I have responded well to therapy. I was in the clinical trial with a drug that is very promising. Aside from the cancer, I am in great health. We found not one but three 100% matches. The odds are indeed stacked in my favor.
The Internal Battle: A dear friend of mine recently reminded me: "You know, Jesus is in the boat with you". To which I replied: "Yes, but HE'S SLEEPING!!!" We laughed, she said, "but he's in the boat."
Well, here I am, with a death-grip on the rail, afraid of things I can't control. I am working hard to let go of said
rail and instead go and rest next to Jesus, who after all is at the wheel. My prayer these days is still for complete healing, but also to be able to remember all the consolation He's already sent my way, so I can fight those moments of fear and doubt and cling to hope, work on trust. And yes, I do know that trusting in God's plan is the hardest of all, because it means acknowledging that His plan and mine might differ, but that His plan is always better.
My spiritual director told me maybe this weight I'm feeling is not so much the weight of the world but the weight of love, of all the prayers being offered for me, of God's love for me, and maybe I just need to stop and let that love in, accept it, all of it.
So, help me Lord to let go of the rail and rest in you.
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