One Step Forward...

Bah. The GVH came back on Monday. That was me at 30mg of prednisone for a week--and BLAM. So now I'm back at 60mg and also on another new immunosuppressive in order to attempt to transition me from the pred without having another flare. So here's your blog post at 4:20am. I've been up since 1:30. Awesome.

Whenever I'm on a new drug I do the full google search on it to get all the side effects in my head so I don't flip out if all of a sudden I feel, say, dizzy for "no reason." So I was looking at the one for my new drug: it causes lymphoma in 4% of people who use it! Now THAT'S a drama I don't need. And, even better, it causes DIARRHEA! That's funny: take this drug that causes diarrhea in order to fix the problem that is causing you diarrhea. It's a little silly, but at the same time, when you're in the situation I'm in you just have to thumb your nose at the lymphoproliferative cancer warnings and say "whatever."

So now I think I'm on more immunosuppressive drugs than I was 3 months ago. Evidenced by the fact that I woke up yesterday with thrush in my mouth. It's basically a fungal infection that makes your tongue white; I had it, like, every day post-transplant till Day 80, I think. So I am also swishing and swallowing the sadly-familiar very nasty elixir to get rid of that. And the new drug has given me mouth sores, so eating is a wee bit of a challenge because everything kind of feels like I'm squeezing a lemon on a cut.

So I'm a bit pissed off at my situation and just so OVER this whole year already.

At the same time, good weather has finally arrived in the Great White North, so sunshine and good times await me and Bambina out of doors. She was given one of those kiddie motorized golf carts by her GiGi, and it is her absolute pride and joy. It goes about 3 miles per hour and she is just all about taking that thing out for a spin every chance she gets. The best part, in her mind, is that it has a little cup and snack holder. So I put her thermos of water and a paper cup of cheesy chips in it, and she was tickled pink to be driving around WITH SNACKS! Then she pretends to be putting in a CD. She'll ask, "What do you want to hear?" Then when you answer she'll say, "Yeah, I don't have that in the car. But I do have The Traveling Wilburys. Interested?" Sure, I'm interested, sweet girl. Play me some Wilburys. Which involves her pressing a pretend button and then wailing loudly a la Tom Petty, "Congratooolaaaayshons for breakin' ma heart!" Believe me, there's nothing funnier than a preschooler in a Del Boca Vista golf cart offering you a bluesy mazel tov on "tearin' it all apart..."

And speaking of cars, she is just one inch away from being legal in a big girl booster seat rather than the car seat she's currently being stuffed into. She wants into that seat so badly, but for a wee petite pudding those inches just don't come quickly enough. She was a decent-sized baby at birth but is, we think, in the ballet dancer's body she is going to have for life. She will probably end up being about 5'1" and 102 pounds fully grown--and that after an all-you-can-eat bender at a Shoney's. Coming from a family of proud heavy people, it sometimes pains me to see her so tiny because all those "food is love" beliefs are in my head and soul from generations of Scottish love. Not to mention that in my family you were always asked if you were sick if you were not a couple of pounds overweight, that good health meant having a little somethin' extra, which I don't necessarily disagree with when looking at painfully thin "healthy" people. So some part of me deep down feels like I, as a good mother, should be force feeding my kid to fatten her up. Luckily the sane part of me (with a helping nudge from the BBDD) just allows her to be who she is. Even if that means she won't see that booster seat till she's 7...

Okay, I'm going to try to sleep now. Hah!

I'm Too Sexy For My Shirt

So the insomnia continues unabated, only now with actual daytime fatigue thrown in due to my tapering dose of the prednisone. So now I really do look like hell as I personify the antithesis of Beauty Sleep. No matter. The primary challenge I am now facing in my ongoing prednisone saga is that of, how shall we say, night sweats. Oh, and day sweats too. As my friend NM in MN would say, "I'm sweatin' like a fat kid!" Having been a fat kid for almost all the years that one can credibly be called a "kid", I know whereof NM speaks. And this is worse. Like, soaking through two shirts a night worse. And for the first time in my life (a life that once had me asking my doctor if perhaps I was missing sweat glands because I never seemed to perspire before completely overheating), I am going for a walk (not a run or a canter or a gallop or even a sashay--just a walk) and coming home with Pit Stains. How sexy is that?!

This whole year I've had a joke, whether it was random missing hair, loss of eyelashes, crazy skin reactions, grotesque tubes sticking out of holes in my body, nasty-looking skin cancer removal wounds, whatever, I always said a la Will Smith in Men In Black, "I make this look gooooood!" But there is just no spin for shvitzing like a shtunk, my dears. And what with my ongoing moon face development, I can only post one photo of how I'm looking these days:


Jus' playin'. ;)

Thanks, Mom!

Mother's Day is coming up soon. So make your plans to honor your mother. Might I humbly suggest, in lieu of needlepoint cushions saying "Moms Mean Love" or whatnot, that you consider joining the National Marrow Donor Thanks Mom Campaign? www.marrow.org "What better way to say “Thanks, Mom” for giving you life? Share that gift of life with another!"

Here's how to join the registry: marrow.org/Join_the_Donor_Registry You'll be sent a cheek swab kit to send back, from which they will be able to type you and potentially match you. Online registration costs $52 to pay for the tissue-typing. It's that freakin' easy, y'all.

My donor saved my life. She didn't have to. Probably had a hundred more important and seemingly-interesting things to do with her time and 52 bucks. That's a chunk of lattes, a bill payment...or even a nice needlepoint cushion for a special lady. But she did it, and now I'm here. Another Mother's Day with my Bambina. Courtesy of a stranger who said, "What the hell; why not?" My immune system is hers; every blood cell I grow is hers. My stem cells, the building blocks of my whole world, are hers. She is as much a part of my life as my own family, because I'm living and breathing because of her. A person who was under no obligation to sign up for anything, but did it anyway.

When I finally do get to meet my donor, I WILL kiss her, germs be damned. And I just might kiss her mother too.

Superstition and Paranoia Go Hand In Hand

So I just got back from Dana Farber. I got good news.

Only, I'm not going to tell you what it is. I'm now officially too superstitious to talk about it anymore till it happens. So you won't hear another word about this unless it all goes (back) to sh*t as they taper me off the prednisone. So let's just all assume that no news is good news for the foreseeable future and leave it at that. Never let me be accused of tempting The Fates by seeking to influence things that must follow their own path to fruition.

In other, related news I learned two things today:
1. I actually have been diagnosed with Acute GVHD rather than Chronic. Both because of the speed with which it developed sans any of the other usual presaging symptoms and the speed with which it departed upon prednisone's arrival. It's weird to get Acute so late in the game, but I wouldn't be me if something weird didn't find its way into the mix.

2. My germophobia paranoia has been confirmed and justified. My doctor told me that one of the reasons I have done so well these past ten months is precisely because of germophobia. With a kid in preschool and moving into a new house and all of the ongoing stuff, he really feels that just being completely aggressive about avoiding germs is always more than half the battle. Because then your new bone marrow can have the chance to grow and strengthen and flourish without having to deal with additional assaults from infections and the antibiotics needed to cure them...and of course because then you don't die from infections that can't be cured. Few transplantees die from failed bone marrow; they've pretty much got that stuff down at this point. We die from infections: bacterial, viral and fungal, all as a result of long-term immunosupression. So whatever you can do (yes, wash your hands/use purell like you're getting a commission) to keep the germs out of your body is really the part the transplantee plays in helping to heal herself. It doesn't always work, and I will continue to be immunosuppressed for many months beyond my one year mark, and so will have to maintain the caution from germs and the avoidance of coughing/sick people. But it was kind of cool in a twisted way to be told that my germophobia coming into the transplant has helped me make it this far. It's like being told that your alcoholism feeds hungry kids! Or that your gambling addiction is helping to close the hole in the ozone! My hangups affirmed! YAY!

So, anyway, here endeth the Bone Marrow Posts for the near future. And sorry for the tease. I'll apologize to you IN PERSON when I can. :)

The Audacity of Insomniatic Hope

So the prednisone-induced insomnia continues, as you can see from these 4am posts. My doctor dropped my dose from 60mg to 40mg a day last week, and so far "things" have gone smoothly. Or, rather, heartily and normally. ;) But the difference between 60 and 40 is huge. At 60mg I was up all night and feeling no pain. Cleaning out cabinets, developing budgets, writing Bambina's Lifebook, channeling my inner Martha Stewart. At 40mg, I'm still not sleeping great (although I'm now able to fall asleep by midnight, I'm just up at 4am for the day), but the consequence-free environment has sadly ended. I'm officially tired. But, hey, a somewhat-functioning brain is a small price to pay for a perfectly-functioning colon, right?!

I have my Dana Farber appointment today wherein I hope to find out (if there is an answer) what my near future looks like in terms of attempting to re-enter society. I know that it will be slow, small and methodical but at this point I'm holding out hope for the ability to even be allowed to answer my front door to the Fed Ex or pizza guy. But what I definitely hope to get is some sense of when I can finally take Bambina to school. I have been so lucky to be able to be home with her this year, but there is no question that I have missed out on her life in a pretty big way. I don't know any of her friends, her friends' parents, her teachers, her classes. I haven't grocery shopped with her since she was two. I have never taken her to a museum during a time when she was old enough to remember it. I have not taken her to a library that she can recall. I have not eaten in a restaurant with her since she was in a high chair. I have not taken her on a playdate, I have not seen her first ballet class, her gymnastics class, I will miss her first soccer "class" this week. In short, I know my daughter as a person but not as a person in the world. If you were to ask me whether she is shy around strangers, whether she is a leader or follower around other kids, what she is like at pick up and dropoff times, I would have to either say "I don't know" or tell you what someone else has told me second-hand. There is a whole section of my child's life that I have not been a part of, and more than I want to eat in a restaurant, more than I want to see my friends or attend weddings or visit other people's homes, I really really really just want to walk my kid into school, put her stuff in her cubby, and tell her I'll see her in a few hours when I come to pick her up. It's really the only thing I want.

She wants to know when I'm going to be "a normal mommy" again, and boy, I do too. So maybe today I'll find out. Maybe I won't.

But I'm hoping I will.

Deceptively Energetic

Nothing for you today, I'm afraid; I'm knee-deep in rice balls. Yep, I'm in full-on 50's housewife mode, cooking meals ahead of time and being all Betty Crocker about it. I came to the conclusion that I'm lucky enough to be able to be home with Bambina (even though I feel a little stab of pain every time I have to convince her that Mama used to put on a suit, fly on airplanes, and carry a briefcase too...No really! Mama had a job! Mama made money! Mama knew every Delta Club lounge in every airport!) But lucky I am. So I've decided to embrace it, and how.

I may have written about the Jessica Seinfeld cookbook before, but if not, it's called Deceptively Delicious. It is a bunch of recipes wherein mac and cheese is not just mac and cheese: it is mac and cheese and butternut squash puree. I love this book, first because it actually makes it possible to get Bambina to eat vegetables (fruit is not an issue; she'll eat any kind of fruit all day long. But if it's green and starts with "v" she's not havin' it on a visceral level). Second, because the recipes actually work, and once she eats it and likes it, I tell her that there is squash in there, have her help me make it with the squash in there, and voila--she couldn't care less about squash in her mac. So I guess you could say I'm being deceptive with my kid about her food in the first instance. And I guess I could say that I don't happen to give a squash. So today is rice balls day. They are fried (check!), they are cheesy (check!) and they have spinach, squash and sweet potato in them (check?). The only danger is that *I* like them too...

The other reason I've been embracing my inner June Cleaver is prednisone. Damn, y'all. I cannot sleep! Last night I actually talked myself down from getting out of bed at 1:30am and going downstairs to reorganize the kitchen cabinets. I'm not kidding. That is messed up, especially if you know how domestically-challenged I tend to be. Luckily, I'm starting to taper the drug as of today. So as long as the "center" holds and no untoward stuff starts happening again gastrointestinally over the next week, I may be on the road to trying to get off this prednisone ride. I was warned by the doctor that I should expect fatigue and mood swings since he's dropping me a decent-sized dose before my Dana Farber appointment next week. The BBDD will therefore be accepting charitable donations of fine bourbon at the address at the bottom of your screen...

So in the meantime I have the most organized filing system, the most organized kitchen cabinets, the most organized pre-printed shopping list, the most organized 6-day hence dinner menu...and a world of fatigue no doubt about to come flying down upon me. But no matter! Press On Regardless, as they say. I'm going to make rice balls and tofu nuggets and "mac" and cheese while the getting is good. And, post-crash, whenever that may be, I'll just send Bambina out to the 7-11 for some pork rinds and a coke for her dinner while mommy watches Dr. Phil on the couch.