First, quick update. We have long been home from Seattle, and concluded our trip with a boat trip to Bainbridge Island (um, I guess obviously it was a boat trip), a tour of the stem cell labs and facilities (so cool to see real scientists! They have lab coats and Erlenmeyer flasks and everything!) and a meander down the Oregon coast coming home.
Everything at the Hutch ended up going pretty well. Bone marrow biopsy was clean; my cells are 100% donor cells. No uterine polyps or fibroids on the ultrasound. No GVHD detected in skin punch or eyes. Bone density good. Everything going smoothly. In fact...maybe too smoothly. Time to change the meds!
I know I've been complaining about the bucket of pills I have had to take each day since day one. But you haven't heard anything until you've heard me complain about tapering off them! First, I had to drop my hormone replacements. Days of manic mood swings ensued. Second, I cut my cyclosporine dose in half. Days of sporadic ear and facial rashes followed by sweet Benadryl nights ensued and continue to ensue. But overall, I'm down to 3-4 pills 2x a day, not including vitamins (which are gummies nowadays because I am so childish that I just refuse to take any more pills). I'll start a taper off prednisone in a couple of months, and the rest a couple of months after that if all goes well. Counts continue to look pretty good, red blood cells coming back and kidneys doing a better job of doing what they are supposed to do. I'm feeling a lot better, with a lot more energy. I attribute that to actually having oxygen in my blood for once. So that's nice.
Now, for the questions. I didn't expect that answering them would require so much soul-baring, but I did promise to answer them all as honestly as I could, so here goes. Please excuse rambling sentences and characteristic overuse of commas.
1) How has this experience changed your relationship with a greater power and your spirituality?
I wasn't particularly settled on the idea of a sentient greater power before this experience, and was still very much searching in the spirituality department. When I got sick, I did try to think my way through it, over and over, to get something worked out before I died (sigh, always the procrastinator). Needless to say, that all came to nothing. Big relief I was given an extension on the living part.
The cool thing is, when I wasn't over-thinking the whole situation, I did come to experience a greater power, if "power" is the right word for it. It surprisingly came through people, through all of you and more, people alive now and people long gone. Even when I was completely alone in my hospital room. It was like everyone was just...there, or here, or whatever. It is strong and it is real and I can't say who or what orchestrates the whole thing; in fact, I can't say that I care in the end. It's just wonderful to really know that it's there.
2) How do you look at society when you are going through this...crap?
I can't say I look at it differently; I'd been a little unimpressed before I got sick. I certainly see more good in individuals then I previously believed was there, which only makes the collective crappiness a little more incomprehensible. I'd still like to see certain things improve, considering the amount of effort I am putting in to stay here. That, and I have brought a child into this mess and I believe she deserves a little bit better.
3) What are the things that make you feel good when you are feeling (A) sick (B) afraid (C) alone?
A.) Medication. I'd like to be able to say something like "breath work" or "meditation," but that simply is not the case for me.
B.) Brett. Also, see #7, below.
C.) see #1. I hardly ever feel alone anymore, whereas at one time, it was a state of being. There was a long period of surreality where my entire world was split into me vs. everybody else. It was like I was watching a TV show of other people walking around healthy, and I was completely detached from them. I couldn't understand any of their concerns, emotions, or lives in general anymore. I'm not quite sure when that faded away, probably when I began to own up to the fact that the cancer was part of me, but just part, and I am still a normal human being. Or slightly abnormal. But lovably so.
4) If the ovaries are indeed firing, can you or would you consider getting pregnant again?
If they were, I theoretically could. They don't totally seem to be at this point, is the final verdict. But either way, no. For one thing, it seems risky. I'm not "cured" yet; they don't consider leukemia cured until one has been in remission for 5 years. That just seems like a dodgy situation to bring a new kid into. For another thing, I've been pumped full of toxins, medications and radiation. Who knows what kind of offspring that might spawn? And finally, I hadn't really wanted a kid #2. I love Luna to a million pieces, and she is wonderfully challenging, and I'm good with that. So, that ship has sailed.
5) How much physical pain have all of the different procedures caused you?
Probably not as much as you'd think. In general, the headaches are the worst pain of all. As well as the severe nausea when I got my intrathecal injections. Oh, and the rectal pain when I first got sick. On a scale of 1-10, childbirth being a 10, those pains were 9's. A lot of the smaller pains (bone aches, biopsies, needles, etc.) become so frequent, they are sort of just sensations any more. Not really painful, per se.
6) How did you manage not to give into the pain and give up?
The pain never caused me to consider giving up (geez, narcotics. They may be all kinds of no good, but they are also small miracles), but the exhaustion sure did. I sometimes just got so tired of it all, body and soul. Not to say I was standing on any ledges or anything, but there were times that I thought, "I can't do another intrathecal injection. I can't take any more pills. I don't want to go back to the hospital. I'm just going to not do anything anymore and ride this thing out into the sunset." And then I went ahead and did all of those things anyway, because despite how often people kept saying, "things will get better," things actually did get better. And eventually, life kept presenting me with more wonderfulness, despite everything. And all the people I love kept showing up and refused to go away. Thanks for that, by the way. So for the moment, it seems worth sticking around for awhile if it can be arranged.
7) How did you manage your fear?
First, I would change the "did" in this sentence to "do." I am still scared sometimes. A lot of times, actually. Second, I'm not sure I "manage" it, but here's what I do. I just feel it, completely and fully. It was difficult in the beginning, because I was stuck with this stupid idea that I had to be "strong" about the whole thing. But eventually, with Brett's unyielding encouragement, I learned to just cry and wail and whine about what I was afraid of and eventually, surprisingly, it just kind of petered out after awhile. I suppose I have to, in some way, accept my fears as part of me, but only just part. Just like I have to accept my cancer, my tricksy blood cells, my exuberant new cells, and the physical rollercoaster of adjusting to them all. I don't take enmity with any of it, I have to take it all in with an open heart, and then it doesn't own me.
8) What are you going to be for Halloween?
No one really asked me that, but I wish someone did because Halloween is my absolute favorite holiday! So for your information, I am going to be a Black Widow spider. For some reason, Brett takes offense. Luna is going to be a witch. I don't know what Brett is going to be yet. Our house looks super scary. It's going to be awesome!
Well, it's Benadryl o'clock for me and as everyone knows, one should never Benadryl and blog. In fact, it is quite possible that this blog will go on hiatus for awhile. Not necessarily because I'm all better and I lived happily ever. It's just that life has been just too incredibly full lately. Can you imagine anything better than that?!
Big giant love to all,
Jess
