BMT Day -9

Bone marrow transplant - Round 2

Tomorrow morning at 9am I’ll be going to sleep under anesthesia for a minor procedure. The medical team is placing a central line, for those who don’t know what that is, it is essentially a super IV. It is “central” because the IV goes into a vein much closer to the heart, in this case about as close as it gets before getting to the heart itself. The specific kind of central line I will have is a Trifusion catheter, typically inserted into the internal jugular vein. It is well named, as there are three lumens, or “ends”, stemming from one line that will stick out from just under my collar bone, allowing the administration of several medications at once, and drawing of blood for testing. It will stay in place for the next three to four months, only to come out when the medical team decides I have recovered enough and am stable to not need it any more.

While a big pain in the neck (literally), it does save me from a buttload of needle pokes and IV placements, so it really ain’t so bad when you think about it. I don’t actually get admitted until Tuesday Dec. 24th. The only reason the line is getting placed tomorrow, the day before I get admitted, is because a lot of hospital staff are out for the holiday on Tuesday and Wednesday. Hospital staff need a break just like everyone else.

Yes, you may have noticed I am getting admitted on Christmas eve. Sounds a bit cruel, but don’t worry, I’m ok with it. This whole thing started almost eight months ago with a seizure. Since then, I’ve indulged in several hospital stays, rounds of chemotherapy, brain surgery, a phase 1 experimental trial (I was patient #1 by the way, basically a VIP), and a SHIT LOAD OF WAITING AROUND FOR THE NEXT THING TO HAPPEN. So needless to say, I just wanna get this over with whether I’m at the hospital during Christmas and New Year’s or not.

Waiting can be very agonizing, especially when I am waiting for something I know is very physically and emotionally difficult. I should mention, this is my second bone marrow transplant, so I have a good idea of what to expect. Meanwhile, for the past eight months a large portion of my life has been put on pause, a third of our kitchen counter is dedicated to holding my pill bottles, and I have been restricted from engaging in many of the things that bring me joy in life.

Hmm. So how am I? I’m actually ok. I have moments of deep sadness and frustration, but also moments of happiness and joy. I know the treatment plan, I have incredibly loving and supportive friends and family, and I know I will get through it. So for now I am at peace. I’ve been reading a lot, writing here and there, thinking about new hobbies to keep my mind occupied over the next year while I recover. It typically takes about a year for people to feel 100% after a BMT.

With all that said, I want to take a bit of side track (however I think you’ll find it still very relevant) and share some zoomed out thoughts I have on cancer in general.

In my experience, the rhetoric among medical staff and families (not as much among patients…) around cancer almost always involves a sense that it is a “battle”. You have to keep “fighting”. “F**k Cancer” is another one and I must admit, I am not very fond of that sentiment. Anger over things I can’t control is a slippery slope.

My gut reaction when I hear that is something like, “Ok, yeah of course I’ll keep fighting, but ultimately there isn’t much I can actually do…I’m pretty powerless in effecting the outcome of whether I live or not”. I’ve seen variations of statements like, so and so “lost their fight with cancer”

As a cancer patient, seeing this sentiment that winning the fight is determined by living or dying does not feel inspiring to me. Again, I really can’t do anything except show up to appointments and take my meds, that is the only weapon I have in that fight. It makes me feel powerless, only to rely on luck. Even oncologists, after all the chemotherapy and radiation and pills and everything else, are just hoping that their patients are among the percentage that lives instead of dies. Modern medicine doesn’t have a sure-fire answer to cancer yet, which leaves a lot of room for hope among everyone involved, patient and doctor.

I have a proposition, hear me out. I am not trying to convince you that it is incorrect to say cancer patients are “fighting” cancer. I just want to be clear on what my fight is about.

My fight is not about living or dying. It is with maintaining my humanity, holding onto my love for life despite the very real possibility that it could be taken from me. For me, loving life means having curiosity, experiencing new things and wanting to learn. Having gratitude for what brings me joy. Taking time to dream about the future. Enjoying time with the people I love. If I can do all of those things, then I can never lose the fight. Cancer only “wins” if it takes away my ability to do those things. That is a fight I feel inspired to win.

Maybe what this fight boils down to is moving forward despite uncertainty and pain. Especially uncertainty. Right now in my life uncertainty is at all time highs. Uncertainty seems to dance with ruminations of fear, despair, anxiety, and depression. But I have to remind myself, those are just thoughts. It is ok to have thoughts like that, I can still live my life the way I want to. I cannot tell you where it comes from, but I feel this unrelenting desire to move forward. Call it hope, perseverance, strong minded, will to live, I don’t know. But as long as I keep moving forward, uncertainty ain’t got nothing on me, I win those fights.

My goal is to write something every day from now until I get discharged, which will hopefully be sometime at the end of January. Day 0 is when they infuse the stem cells into me, which will be Tuesday Dec 31st, and is why this post is titled Day -9. New year new me, Santa is comin to town and he’s bringing me a new immune system!

Cheers