Get Thee Behind Me, Tetanus

Today was Vaccinations #2 Day: Hib, Diphtheria, Pertussis, Tetanus and pneumoccocus somethingorother. These ones hurt waay more than the last ones, if you can't tell from my perplexed expression:


I'm now off to conquer AM radio. That's right folks. In my quest to become the Empress of Cause-Based Media, I'm doing an interview for the upcoming Jimmy Fund telethon on WEEI. I thought, "Cool, it's for radio." Turns out it's also being taped for the big screen at Fenway Park. Okaaay. Had I known that looks would count, I would have made my blue rinse and blow-out appointment long before now. So it will be what it will be: my funky hair, moon face and me. My donor will also be there, so it will be great to see her again without the pressure of a public luncheon breathing down our necks.

Speaking of breathing down my neck (or not), my next Dana Farber appointment isn't for 3 months! How insane is that?! I sat there today, eating my corn muffin from Dunkin Donuts and drinking my decaf tea, watching a woman in a bandanna eating a pop tart gingerly while lifting her mask. It really smacked me in the face that I was that woman not so long ago. It made me feel for her, knowing how much suckage that is. But it also made me want to get out of there; to escape the constant reminders of how sick I was and felt. How nice is that?

I'm definitely still in the post-transplant process, will still be immune-suppressed for probably another year, won't ever really be able to say "no worries!" even if just for psychological reasons. But I really just want to get beyond being the Sick Girl and get back to being Just E. I remember a few years after Gilda Radner's death Gene Wilder (her husband) finally announced that he was "cancered out" and didn't want to do all these interviews about Gilda anymore. That's kind of how I feel at this point. Not about the interviews, because that's actually where I see me being able to do some life-affirming, positive work that removes me from the large pool of Sick People. But just in having my life more or less revolve around my health; I'm kind of over it. I'm "aplasticked out." So much of the past few years has been devoted to my diagnosis, then my failing health, then my oh-my-god-I'm-f*cked health, then my transplant, then my recovery, then my GVH; and I'm just kind of done giving anymore time to a disease I no longer have. I want to move beyond. Which is not to say that my GVH isn't still bugging me, and that I don't have daily stuff to deal with on the health front (Who doesn't?! I'm special?). But just that it's something I want to incorporate into my life and live around, rather than having it be the sole focus.

I guess what I'm saying is this: it's absolutely a miracle that I'm alive, and the best way I can think of to show gratitude for that fact is to really, truly live. Not under the cloud of disease, not under fear that the bottom is going to fall out, not with a constant eye to the challenges of the past.

Or, put another way, the best way I can thank my donor for her gift is to use that gift wisely.

Only Human

Not too much to post today (kind of the story of the past few weeks, no?). I'm just ready for the weekend. I'm still on prednisone, which means I still have constant insomnia, which means I still am getting about 3 hours of sleep a night, which means I am still exhausted pretty much all the time. What's interesting is how adaptable humans are when it really counts. I was thinking yesterday that if you'd ever told me that I'd have to survive on 3 hours of sleep a night for months at a time, I'd have certainly pronounced it impossible. And yet here we are, making it work on 3 hours a night. As high maintenance creatures as humans are, we are also capable of making our minds and bodies do whatever needs to be done at a given time. The same holds true even retrospectively. When I was in graduate school I also worked full time, so my daily schedule was as follows:

5am: wake up
7am: start work
5pm: leave work
7pm: go to class
10:30pm: leave class/travel home
midnight: go to bed

As I look back on that, I simply cannot conceive of how I did that. I recall it being difficult and involving lots of eating things like ramen noodles or big soft pretzels while on the go. I remember drinking so much caffeine that for years after getting my degree I couldn't stand the smell of coffee. I remember having no real social life since weekends were when I did the homework from the week before. But I don't recall ever feeling as if it was unbearable; yet when I think back I can't imagine how it wasn't.

I think the same is true for health issues. I've recently been in touch with an old high school friend who has had terrible health problems since her early 20's. Each time she was getting better, something else would happen and leave her with damaged nerves, no ability to walk for a while, you name it. And yet here she was telling me about her job, her family and her life in the context of "but I'm otherwise so very lucky and blessed." At each stage of her illness, she has just adapted to whatever limitations became reality, and as a result has maintained the same sunny and forceful persona I always remember her having.

Same with the people on the GVHD listserv I joined. Man, you want to feel like your little diarrhea problem is nothing? Sign on to a GVHD listserv and start counting your damn blessings. Wow. These people are suffering. Their lives are a hassle with a capital ASS. I joined to get some group thoughts on how to perhaps eat something other than bananas, rice, apples and toast without spending a day and a half on the commode. And just to get some sense of when this all might end, what ongoing prednisone and cellcept side effects others are seeing, etc. I've yet to ask my question, however, because it feels so minor. Like, I'm so sorry your lungs are shutting down, your skin is peeling off in painful layers, or that your 12 year old kid's joints no longer function so he's paralyzed, but can we talk lunch menus for me?! And while we're at it, let's play Spot the Listserv Ingrate, shall we?!

I generally am anti-listserv, on the theory that I hate open mics (and the weirdos they attract) and a listserv is nothing more than an online open mic night. But I joined in a fit of despair that I am basically eating 4 food items all the time, mealtimes are depressing, I'm losing muscle mass because most protein sources don't "sit" right with my colon, and I'm just so effing over this whole transplant aftermath (as grateful as I am to be alive to be facing it). And then I read the other messages. I only had to read about three of the ones about kids and I got the message I needed: it all sucks, but sometimes you have the kind of suck for which people would gladly exchange theirs. So perhaps you should be a wee bit grateful that a colon-under-attack is your only concern. And here again, the people on this list are just showing so much adaptability. Can't move your legs? Now you take your grandkids out in your wheelchair. Can't read anymore because your tear ducts are destroyed? You amass a library of books on tape. All of these stories are testaments to the ability of humans to adapt, survive and--yes--even thrive under some pretty crazy circumstances. And I realized that I don't need to ask my questions to feel better about my GVH. I already do feel better. Not because it doesn't suck; it does, and mightily. But because I realize how lucky I am, and also how--no matter what happens--I'm a human (with all of the failings and fortitude the word implies), and we always find a way to make it work.

Nocturnal Admissions

I'm up again. Woke up at 1am and couldn't get back to sleep. I now have the cleanest home office, all you friends with August birthdays have your cards written and addressed, and I've made some headway in organizing our online photos. Now I'm exhausted and settling in to watch TV in the hopes of maybe catching another hour before Bambina decrees that it is "morning time!"

Just in case you are a person who sleeps at night, let me tell you what you are missing on television:

1. The Knife Show. That's right. A whole hour of opportunities to purchase various swords, scabbards and daggers. It's a medieval home shopping network.

2. No fewer than three entertainment programs featuring that new Eddie Murphy movie "Meet Dave." Does it even need to be said that a) Eddie should cease making movies, and b) you know the movie is going to be god-awful when the voice over begins, "Starring Eddie Murphy...and Eddie Murphy!" I mean, how many movies can this man make in which he plays every character? What, does he get overtime or something? Make him stop.

3. A rerun of Larry King Live in which we ponder whether UFOs are targeting the Great State of Texas.

4. Suze Orman hectoring some poor woman about her interest in buying a $14,000 quilting machine.

5. An infomercial for a 4-DVD set on Making Instant Internet Cash. It features various people standing in front of palatial homes or horses with graphics like, "Made over $100,000!" Followed by a large-breasted woman speaking to her large-breasted friend in a poor-man's-IKEA living room talking about her friend who made "serious instant cash!" You can always tell you're viewing a legitimate offer when everyone in the commercial is talking about "the product" and "the system." You just wonder if the shmos calling in have read the fine print on the screen saying, "Unique experience. Individual results may vary."

6. Various other informercials for weight loss, penis enlargement/stamina enhancement, and of course all the home shopping jewelry channels.

7. Jesus Jesus Jesus. However you like The Word, you can get it on one of about 33 channels. Gospel-inspired? Check. Classic big-haired Trinity Broadcasting style? Check. Young and hip Christian pop? Check.

8. Any number of rap/hip hop videos that are inexplicably not parodies. I mean, how many times can you make a video with women dancing "up in da club" while you do that beatdown move, then cut to scenes of men and women dancing in slo-mo as you tell your "baby girl" or your "shorty" something she needs to hear? How early '00's is that?! And why are Diddy and Usher in 50% of them?

And now I will attempt to get some shut eye, without even giving you a decent segue from that last item. Put it on my tab.

Healthier, But No Nicer

You know how people often emerge from a life-changing catastrophe to say that they are now a better, kinder, more decent human as a result? Yeah. I can't. I'm apparently just as unpleasant as I ever was. Case in point:

I went out the other night to my first solo event in about two years. I was a bit nervous, me being out of practice with the social skills and all, but it turned out to be total fun. I was glad to see that I can still fake a little confidence-while-walking-into-a-room-alone maneuver. Nice. That one has served me well for years, and I’m glad I haven’t lost it. Because once you fake your confidence on the way in, it just kind of stays with you for the night. I’m definitely not a work-myself-up-to-it kind of social person who enters quietly, sits around, gets my bearings and then gets social. I either have to enter the party balls-out or just stay home. So I’ve got that going for me, which is nice (to quote Bill Murray).

When I arrived at the event there was a rather lovely looking man there already. I did the obligatory ring check to see if he was married or single. I introduced myself and started chatting with him and a couple of other people. As this was going on I was wondering why such a cute and seemingly charming man should still be single at the age of 38. (I know, I sound like someone's grandmother, don't I?) But seriously: some cute girl or guy should have snapped him up by now.

And then dinner/discussion time arrived, and it all became clear. Number One: Table manners or the lack thereof. It was an instantaneous turn-off. Here's this cute, successful, charming guy. Eating with two hands, licking his fingers, grabbing chips out of the bowl as if he's on Survivor and the person who gets the most in one handful wins the Immunity Challenge. I had to avert my eyes it was so distressing to see. And the lack of grace. Generally at a group meal you pass stuff around. When this guy got the plate, he took his food then put the plate down next to himself. So you'd have to say "Can you please pass the burger buns?" in order to get any dinner. I was imagining myself out at a restaurant with this guy on a first date and just recoiling in horror at watching Mr. Creosote masticate turkey burger with his mouth open.

Number Two: This event was a discussion group, so there was reading involved prior to attending. Now, if I hadn't really read I'd have kept my cakehole shut and interjected, "Yes, I agree" at various points to look participatory. Our formerly-cute friend over here apparently saw a lack of knowledge of the topic as no impediment to joining the discussion. He'd make pronouncements like, "The man's personal assistant, Charlie..." and someone would say, "Oh, was it Charlie? I thought it was Archie..." And he'd firmly say, "No. It's Charlie. Of course it's Charlie." Turns out it was Archie. This happened no fewer than 5 times, even involving a discussion of whether a particular book was set in Turkey or Iraq. Hellloooooo?!

So as I was supposed to be discussing this book and its sociopolitical ramifications, I'm instead sitting there in the yenta part of my brain enumerating all the things that make this man completely undateable. And then it also hits me: here I am, my first foray into real humanity in probably two years, out in a blaze of glory and gratitude for my great good fortune at having lived through a stem cell transplant to be here when I know I'd otherwise have been in the ground--and I'm nitpicking some poor shmo's table manners and Q score as it relates to dating.

There were times during the past year when I wasn't feeling well or having a particularly bad day, when I'd tell myself that I'd never be judgmental again, that I'd have a new appreciation for Life's Rich Pageant and all its contestants. That I'd find "meaning" in surviving a transplant. HA HA HA HA!! Apparently what I meant was, "I'll find meaning in doing mental feasibility studies of other people's dating suitability when I should really just be savoring the fact that I'm sitting there at all."

I probably should call my donor and give her a little buyer's remorse, huh?