Do you recall all those posts before and during the transplant saying how I really, really didn't want to have GVHD but if I had to get it I sure hoped it wouldn't be the intestinal/gut kind?
Yeah. Gold star to the first reader who can guess what I have.
So this is where I quote Hugh Grant in the opening line of the movie Four Weddings and a Funeral: "Fuck! Fuck! Fuck! Fuck! Fuck!" So it's not a great situation but it's not the end of the world either (she says hopefully). Especially because my doctor's exact words were, "they don't really know what you have, but because it's inflammatory and in the current context of where you are in the process, we're going to treat it like it's GVH." When I talked with my Mom about it I realized that, given the choice, I'll take GVH (which has treatment at least, however imperfect) over "you have something wrong that is making you shit 22 times a day but we have no idea what it is!" So yeah, I'll take the GVH. So I took 60mg of prednisone yesterday and today and, much to the disappointment of my fantasist thinking that I actually have some kind of virus rather than something 70% of all transplant survivors get, my poop was normal today. Totally effing normal. Which, on the bad side, confirms the GVH. On the good side, means I'm no longer on close personal terms with the commode and can actually eat food beyond white bread and white rice an hour before bidding them farewell in the can.
The bummer, of course, is that prednisone is a fucking shitty drug. It's a blessing and a curse. You need it because it keeps the overactive lymphocytes from destroying the lining of your intestine till you suffer malnutrition, anorexia, then bleed out and die. But you hate it because its side effects are so miserable. The major side effect is, obviously, additional immunosuppression, which means I'll be out of my house arrest who the hell knows when. Certainly not in May or June anymore. I can't even talk about it at the moment because it depresses me too much, so we'll just move on the other effects. Did I mention the "moon face"? That chubby-cheeked Jerry Lewis circa 2006 look that says, "I'm on prednisone!" And did I mention the massive involuntary weight gain? And did I mention the insomnia? (I woke up last night at 3:25 and did not get back to sleep, and that after one [albeit monster sized] dose; I shit you not). And did I mention the insanity/depression/rages it causes if you're tapered off it too quickly? But hey, at least I have a functioning colon, right?
To which my Mom answers, "Yes. You have a functioning colon, thank God. Let's do the pity party and then get on with it." I've figured out a lot about my Mom this week. When she first arrived I was thinking that this was the worst week for her to come because I was feeling so unwell and not so up for entertaining, and I felt bad I couldn't show her a better time (one wonders how a shut-in can credibly show an out of town guest any time at all). But now that we're on the other side of this week, I'm so glad she was here. Because let's face it: when you're having a literally shitty week and watching your plans for freedom two months from now go down the toilet, it's kind of critical, if you are at all lucky enough to have one, to have your Mom around (who might we add, couldn't care less about you "entertaining" her). My mom, as I've written before, has always been a pioneer-type woman, just gittin 'er done no matter what the circumstances. She was also, in my parental relationship, "the leveler," as in, the person who told you she was proud of you for making the Honor Society and now you should go clean your messy hole of a room before you can go to the party because you promised you would earlier and you didn't. I know some of my friends were aghast at that, and at the time stuff like that used to make me so mad. But now that I look back on it--and look at my life now--I realize that my Dad gave me wings but my Mom gave me roots. And make no mistake, you need both to survive.
My Mom, as I can most easily describe her to people who don't know her well, is quite simply "not havin' it." She's not impressed by you, your car, your house, your job, whatever. She couldn't care less what you own or dress like or think you are. She judges people on a wholly non-material scale. That's about as best as I can do to capture the amazing texture and color of who my Mom is. She just ain't havin' it. No excuses, no yeah buts, no nothin. Do what you say you're going to do, don't lie, don't make things seem or be worse than they really are, don't believe your own hype, and count your blessings you scunner. A case in point: I was saying how the prep for the colonoscopy was so hard because I essentially did not eat for 40 hours. My mom immediately said, "You did eat. You had broth and jello!" The BBDD looked at me and grinned, and I said, "Mom, I'm referring to actual caloric food, not POW food." She then said, "Still. You did eat." Her message in her own special way? "Don't make this worse than it is. You did it and you can do it again if you have to." Message appreciated.
It was actually discussing broth where I was reminded that my Mom has come to who she is honestly. She has simple tastes, few real belongings, and a razor-sharp ability to distinguish between a need and a want--her own or anyone else's. She grew up in a tenement in Glasgow, in a one room flat, with an outhouse that her family shared with four other families. I said, "Wow, what a bummer you didn't live on the second floor where the outhouse was inside." She said, "No, not really. Because each of those four families had six kids, so I felt pretty lucky to walk outside and share a toilet with about 18 fewer people." She said her school had no real heat, neither did the school outhouses, so her mother would make my mom and my uncle hot broth and walk it to them at school so they could have something warm in them on a cold day. She had one dress, one pair of shoes and one coat, which my grandmother kept scrupulously neat and clean because there is no shame in being poor but there's a ton in having no respect for yourself. We talked a lot about her girlhood, and I realized that if you read A Tree Grows in Brooklyn and Angela's Ashes, you can probably imagine a bit about her childhood and the essential poverty in which she lived, although she claims to have been no worse off than anyone else she knew at the time; it's just the way it was.
Which is why, I realize after all these years, that my Mom had very little time for "oh my god my Atari is broken!" or "Oh my god I'm starving! I haven't eaten since noon!" or "I know I said I'd go, but I got a better invite to something else." She has been preparing us for a tough world while simultaneously hoping we never have to experience it. She's the epitome of tough love: I'm making life rough for you now so it will be easy for you later. Which is not to detract from her very loving motherliness, her sitting with me in bed when I was a sick kid, or kissing my tears after falling off my bike, and all the warm and loving things a mom ought to be. She has been--and still is--all of that and more. But what makes her such a unique mom is her absolute dedication to keeping us real, to keeping us in the proper perspective, to delivering a sorely-needed attitude adjustment at a really inconvenient and unwelcome time. All of the stuff that someone outside the family might think odd or harsh if they didn't have it, but all of the stuff that has helped make me who I am today.
Which is why I'm going to figure my way through this GVH clusterfuck. Because what the hell other option do I have? But I'm also not going to pretend it doesn't hurt lest some other poor schmuck think it's no big deal so why worry about it pre-transplant, or worry about it in that "but surely that won't be me" way. And I'm not going to pretend that I'm okay with however much longer my house arrest will continue and how that will affect my sweet Bambina. And I'm just vain enough to be unable to pretend that looking like Jared "pre-Subway" is just fine with me. It all very substantively sucks. But I'm also not going to pretend that somehow my pain is worse than any of the other 70% of poor schmucks who are right in the shit with me and who I somehow magically thought I would not join simply because I am me. And I'm sure as hell not going to pretend that I will learn any great lesson from all of this and that I will emerge a better person at the end of this ordeal like some martyr. But I do know that I already feel more grateful for the life I have (overactive lymphocytes committing sabotage notwithstanding), and that whenever this is over (if that day ever freaking arrives) I will look back and think not "wow, I really learned a lesson and am wiser for the experience. I have so much wisdom to share with others!" I'm going to grab the BBDD and the Bambina and run into the future and leave this shit behind without ceremony, because it has now officially stolen too much of our lives for me to be all noble about it.
Because if there is anything my Mom has taught me, it is that I am amazingly special for being who I am, yet at the same time, I'm just another person with a job to do as a mother and wife and fellow human on this planet; that the same rain falls on me as everyone else. And I can either spend my days ruminating on the why me's or I can just dig in, git 'er done, and get back (God willing) to the job I was put here to do.