But other than that, I'm doing really, really well (but you see there is this stubbornly superstitious side of me that doesn't want to jinx anything and is knocking on wood all over the place any time I express any sort of satisfaction or optimism with life, and then there is the other side of me that knows that is ridiculous, but even that side of me lets the other side do its thing just in case).
So as I was saying, things are really great on the whole. This is how my health situation has played out since October. I continued the medication taper for awhile, then had to stop when my immune system continued to repeatedly throw worse and worse temper tantrums all over my face. What happened is this: the rash would flare up all red and puffy and stinging, then it would dry up and itch and I looked all wrinkly like the Crypt Keeper, then it all would flake off and I couldn't wear black, then I would have radiant new skin for a day or two, then it would start all over again. It would be a cycle of about 3-4 days. At least my new cells are persistent, which is a plenty commendable trait to have if you are an immune system. More recently, while my new cells seem to now be satisfied that my face really does belong to me, they are now testing other areas for weakness (kind of like velociraptors, you know?) such as my inner thigh, my left armpit, the insides of both elbows, my digestive system (mildly), the backs of my knees, and my neck. So there has been some puking and itching and creams and even the purchase of MAKE-UP, if you can believe that. Vain? Yes. But I figure if I've been spending hundreds dollars the past couple of years on medication that makes me grow hair on my back, I'm totally willing to indulge my vanity once in awhile.
Lately, though, the rashes haven't been bothering me that much. I'm not sure, but it may be because things are improving (knock wood). It is also possible that I'm just getting used to it, and/or that is was never that bad to begin with (because let's face it: things rarely are). The whole thing is supposed to burn itself out eventually, although no one can say when. But they are fairly sure it will be less than 5 years :-/. So until it goes away, I have to stay on a low dose of a few of my medicines. Oh well. I'll be tapering down on those a little more in June, so wish me luck.
The flip side of dealing with increased rashiness from lower doses of my meds is that I feel a lot better. And did I mention I can go places now? I am somewhat less immunosuppressed at lower doses of immunosuppressants (go figure), so I can fly on a plane and walk through a crowd without holding my breath and cringing (although I still sometimes do those things just in case). I've flown once or twice a month since October to San Diego for work, and to Seattle to film an interview at the Hutch. Please don't ask about the interview. All information in good time.
My blood counts are very good, and often fall within normal ranges. They flucuate, but blood cells do that, turns out. Most blood lines are doing well, except my lymphocyte-makers seem slow on the uptake. I mentioned this to my doctor, who said, "That's because you are taking medications that suppress them." I hate it when the answer is humiliatingly obvious. Anyway, I still have to have IVIG infusions every 5 weeks or so. Interestingly enough, I get haircuts with the same frequency, which turns out to be the one inconvenient thing about having short hair.
Energy-wise, I have either forgotten how much energy it is possible for me to have, or I'm doing great. One or the other. Either way, I can exercise, travel, work, keep up with Luna and Brett to some extent, and engage in social/group activities and a couple of hobbies like bird-watching, playing the piano, reading and watching the Ant House we have in the kitchen. A lot of these are fairly sedentary hobbies, but they are long-beloved, and I'm glad to have slowed down enough to realize them again. I have been practicing yoga at home on and off, and for the past 3 weeks, have been practicing in the studio at least 3 times a week at 6:15 a.m. In fact, I went 6 days in a row at 5:30 a.m. Did I write that loud enough? 5:30 a.m. The only people that get up at that hour are a couple of psycho runners I know. YOU know who you are, ladies. And I recommend you take the "psycho" label with a grain of salt, coming from someone that has a cabinet full of animal skulls in her living room. Anyway, it's been the physical and mental and spiritual hurdle that yoga is intended to be.
Speaking of running, I actually ran the other day without crumpling into the dirt at the end. Another thing that happened the other day is I remembered how much I had come to dislike running before I had cancer.
Food remains a mystery to me. I eat it, and then I may or may not throw it up. It's a fairly acute phenomenon, and unpredictable, so also a little awkward. I wear shoes on the scale at the doctor's office to minimize the appearance of weight loss. Although I don't know how I'll be able to justify wearing clogs when it's 90+ degrees out. Even if they are the best shoes in the world for your feet and your back.
Finally, after all this, you may be wondering. "So, how are you doing, personally?" or "So...wait, I'm not sure if I care beyond the information already provided. I'm going to bed." If the latter... Good night and good luck, folks. The End. If the former, despite the raving madness of my magical thinking, I think I'm doing and feeling great. I have 3 final things to say.
First, I feel like I may have left people hanging by abandoning my blog. I realize that people haven't forgotten that I had (have?) cancer and a stem cell transplant and that all kinds of misery and melodrama followed. I guess I thought everyone would forget after a year or so, or would at least be so tired of hearing about it that they could barely open Facebook without cringing in apprehension that there would be an announcement of a blog post trumpeting, "Did I ever tell you guys how my second leukemia symptom was RECTAL INFLAMMATION?" But I'm beginning to think maybe I'm not entirely accurate in my thinking about that. I have noticed that in the past few months when I see people that I don't see often, they ask me how I am. "Hey Jessie! How are you doing?" And I say, "Hey friend! I'm fine. How are you?" And then there is this awkward pause. And they smile at me and I know they are thinking, "No, I mean your recovery. You know, the whole cancer thing. How is that going?" I am much less adept in speaking situations than writing ones, so even if I do try to explain in person how I'm doing to those that pry hard enough, I get the feeling I am leaving them unsatisfied if not completely bewildered. Anyway, I apologize for that.
Secondly, and this follows the above realization, I began to put myself in the shoes of a blog-reader. Which isn't too hard, because I read many blogs. So it turns out they are my shoes already, which is pretty convenient. Or wait, I am in their shoes. Anyway, when I was first diagnosed, some of the most detailed and useful behind-the-scenes leukemia and transplant info I read was on other peoples' blogs. But there was always a looming, horrible side to this sort of blog-following. Many, even most of the blogs just ended nowhere in particular. Others ended right before a big, dangerous procedure with no follow-up posts. And a larger number than one would hope ended with a loving family member posting about the blogger's transfer to palliative care, and eventually, their obituary. Regardless, there seemed to be few to no blogs that were more than a year or maybe a couple years long. It was disheartening. And scary. I'm sure that with some of the blogs that just ended, nothing much was happening anymore so the blogger just stopped writing. However, you know what a newly-diagnosed potential transplant recipient needs to see? They need to see that that although they will go through months or years of treatment and transplant and recovery, that there is the possibility that there will come a time when nothing much is happening anymore. Even if it's just for a little while. Someone needs to stick around and tell people that something, anything, however small, is on the other side. I have a couple of blogs that I follow written by women that have had transplants, made it a couple of years, relapsed, had another transplant, and are still having moments that make it worthwhile (amongst the admittedly crappy moments) 3 years later. And still they blog, and they are awesome. I want to be awesome like that, too! Well, I'd like to be kind of awesome...maybe someone that checks in every couple of months. Let's keep expectations low here, people.
The thirdly thing I would like to say is how much fantastic-ness there has been in my past couple of years on borrowed time. So much of it has been due to being able to share in other peoples' lives, which I guess is what life is, for the most part. Thank you for that, you know who you are. And all the wonderful, turbulent times with my Luna... the still hysterically laughing after all these years with Brett... I could go on and on, but it seems I already have. I really have been trying to touch base with my friends and loved ones individually in some shape or form, which is happening at an absolute glacial pace, but it is happening (and if you read that and now you're like, "What?! I don't even remember what your voice sounds like." then I haven't gotten to you yet but I WILL). And yet there has been a lot of crappiness, too. For myself, and for other people I care about, and it's all very inexplicably unfair and then we know that fairness has nothing to do with it and so on and so forth. But I am being honest when I say I'm in it for all of it. The highest highs and lowest lows. I'll take it all. I believe I have said that before, but this time I am also compelled to quote the Yaqui brujo, Don Juan (according to Carlos Castaneda):
"For me there is only the traveling on paths that have heart, on any path that may have heart, and the only worthwhile challenge is to traverse its full length--and there I travel looking, looking breathlessly."
I have certainly quoted him before. I am also compelled to declare that quotes are entirely overused in non-fiction writing and correspondence these days. I'm sure there is a quote about that somewhere.
And finally, I am not capable of the magnitude of magical thinking that is required to cover this blog. Please knock some wood for me, after you read this? Maybe twice, if you have time.
♥
