Day 235: rejoice, rejoice

In an effort to not make excuses of why its been so long since I've posted an update, I'll just launch into the updates.

I don't think I've yet reported that we have begun slowly lowering my anti-rejection drug; with the goal of getting off of it completely. With any other type of transplant, this would not be possible-- other transplant patients are on immuno-suppressants for the rest of their lives. The immuno-suppressants keep their home-immune system from attacking and "rejecting" the transplanted organ. But because my transplant was essentially of the immune system, there's a chance that I'll be able to get off the anti-rejection (there's a chance I won't as well, just have to wait and see). We lowered my dosage a little bit a few months back-- and I presented with some mild (but painful) GvHD in my joints and hands. This flare-up is expected somewhat, a little GvHD is actually a good sign (shows that the immune system is working). So we kept my anti-rejection where it was and I went back on some steroids (hooray). I'm now almost weened off the steroids (about 3-4 weeks left--they do it very slowly when we're dealing with GvH), and then we will begin to lower the anti-rejection again.

I will soon (in 2 months!) also start to get my first vaccinations. Because I'm starting over with a new immune system (right now I have less of an immune system than even a baby. A baby is protected by their mother's immune system for a little while after they are born) I have to get all vaccinations over again. Cheers to Measles, Mumps, Rubella, Chicken Pox, Hepatitis A, C, Polio, Influenza, Diptheria, Tetenus, Rotavirus, etc. Nice not knowing you.

Finally I mustered up the courage to ask my doctor about the timeline, as it stands now, if it's changed, etc. As far as I knew, we were in a wait-and-see stage, with the possibility of being able to join the world again around my 9 month mark/June/July. I thought I had a chance of getting back into the world this summer, but it is not to be. The 12 month quarantine is still in place, so I won't be able to go back to work or go to public places until October. This was a letdown for me, I think I had started planning a life for this summer--one that I did not see spent still in my apartment. I am trying to stay positive. I am trying to accept. I knew this was a possibility. But I have to say, I was really disappointed. Apparently my doctor is one of the more cautious transplant doctors, and I am thankful for that in many ways. I've probably avoided many more aggravations and complications due to his caution and my intense quarantine. But my mind can hardy take it anymore. This is really really hard. When people ask how I'm doing, I give some emotionless and detached answer that does not even begin to tap into what this has been like. The other day I was reading an article about a man who went through cancer (with both radiation and chemo treatments) and all through it he kept a journal: mostly pictures, some words. It is now published, and looking through it, he kept a sense of humor about the whole thing; but was also very raw and honest. In the article he says he's glad he kept the journal, because

“If you asked me now what it was like I would say, ‘oh, it was tough but I got through it okay.’ Something simple and dismissive like that.  Or I suppose I could go into something equally detached from my actual experience, an operatic flight of fancy about the existential anguish I experienced every day in treatment."

This makes complete and utter sense to me. It is exactly how I feel. And I'm not even through it yet. It's trivializing, to try to explain in a sentence or two what this has been like. But I find myself trying, all the time. Any attempt to explain it turns into a simplistic joke "oh its hard but the sun is making it better" "Wahoo, Spring""Just grappling with my plague of existential questions LOL!!!11" "i luv TV!"

I guess most of the time I don't even now how I feel, or I'm confused, or I'm just shutting off mental switches so I can physically make it through the day. I'm not sure. Probably all of those things. I think prolonged traumatic situations force you to shut off parts of your emotions, in an effort to self-preserve. I'm trying to be aware of this phenomenon in my own life; accept all of how I'm feeling, trying to not turn off. But in some ways, I think it's unavoidable.

That appointment with my doctor wasn't a total wash. He did give me the green light to go to other people's houses, which is a big step. So, can't go out in public yet--but I can venture to places other than my apartment, the car, and Dana Farber: which is all I've seen in the past 8 or 9 months. As long as you don't have a mold problem, I can visit! I've ventured a few, and am looking forward to getting out of here; small victory by small victory.

In other news, my theatre company has started a new project. I had to ask my doctor/nurse about being involved with our new show--if this was a feasible idea or not, and how involved I could be. They seem to think that as long as I'm careful and our rehearsal spaces are clean, I should be okay. If anyone's not feeling 100%, I'll just wear a mask. This was a huge relief, especially coming right after the news of my continued quarantine. I need this so much. I need something I can focus on, pour into, love and nurture and watch grow.

Over the past few months, "the trifecta" (the three of us goons) have been meeting and working on a script for a new project. Last week we held auditions to much success, and we have cast the show. Meeting, writing, running auditions, moving my body: it has been the most normal activity of the past year. I felt, normal. I could forget for a couple hours all this shit. And it has been life-giving. I am so excited to jump into this. It is one place where I can take risks, be daring, explore, make choices, decide. Almost no where else in my life has this been the case this past year. I feel like myself again, finally, when I'm doing theatre.

It is important for me to take a moment every day and look at how far I've come. From cancer trying to kill me, to weeks spent so drugged that I can't even remember them, to myriad unexplained pain and complications, to not being able to swallow or eat for two weeks, to waking up every morning stiff with bone aches, to sleeping all day and crying for the hours I was awake. To now when I can wake up and make breakfast without having to sit down and rest between stirring the oatmeal, go for a walk, write, host brunches, plan rehearsals, play bananagrams. It is day 235. In just a few days, it will be one whole year since this began. I have come a long way. And I need that reminder, again and again. And again. Rejoice, Rejoice.

up, up, and away---