Barf Nadir

Apparently, the two-week period after transplant is called "the nadir," referring both to the low level of blood counts and the low-level of feel-good. After an absolutely smashing transplant (which is essentially 15 minutes of what looks like V-8 juice being infused--very anticlimactic), four hours later all hell broke loose. Fevers, chills, barfing, more barfing, high blood pressure, just a completely dismal 24-hour period that followed. Which is why you didn't hear from me yesterday. I think I had fooled myself into thinking that "the worst is over." Well, as the very funny Julia Sweeney's book was entitled, "God said 'HA!'" I'm reminded that it's not called The Nadir For Everyone But E, or The Nadir For The UnScottish. Nope. It's the Nadir. For everyone. And I suppose that includes me...

I'm better today, so will write about more fun stuff later in the day. During my apex. :)

What I’ve Learned So Far

For what it's worth:

1. When you get the bad news (be it cancer, MS or whatever), let it sink in--but not so long it endangers your health. The immediate first reaction of loved ones is to push you toward a course of action in the next five minutes. Obviously. They love you. Your obvious reaction is to push back NO. Why? Consider that the diagnosis has just knocked the wind out of your sails and, if I might suggest, given your sense of control over your own life a thorough whuppin. You don't need anyone else micromanaging your health, thank you. Acknowledge that, respect it, but then take control back, not by inaction but by resolve.

2. Read Lucky Man by Michael J. Fox. He takes you through all the denial, avoidance, and acting out you're ever going to do, in a compellingly honest way (about his Parkinson's). I cried reading that book because it just felt like he had watched me over the past year and was calling me out as a mother, as a person with a future, and pushing me to both acceptance and battle by telling his own story.

3. Recognize that acceptance is not the same as defeat. In fact, it is the first step to winning your battle, whatever that victory is going to look like for you. I had to stop working with clients. I had to give up my business for the time being. I had to admit to friends that I wasn't invincible. All of which s*cked. But it was time to accept it and move on. I so strongly believe that you can only get to your next place in life when you let go of things that can no longer help you, no matter how comforting it may be to hold on. My next place, unfortunately--and fortunately!--was here. My place after this will not involve working with clients, something I could only have concluded as a result of this happening. The next half of my life will be something different, and I'm now glad I finally managed to let go of my other "stuff-that-defined-me". Something new is going to define me, and I'm still figuring out what that will be. It won't be what I used to do for a job, and it certainly won't be aplastic anemia.

4. Ask family and friends to help you out--and then trust that they will. I didn't lean on my friends for a long time, partly out of (see above) denial, and partly out of perhaps a latent suspicion that I'd be asking too much of people who I knew loved me--but why really push the issue, huh? The hardest thing I've done with this is be open to--and accepting of--help (see control issues above!). But it must be done. And sometimes, only in your saddest and weakest moments, do you realize how strong are the bonds that surround you. And, ironically, something about that makes you feel more optimistic and more in control.

5. On the same note, feel free to set limits about where others belong in your life, when you want to talk, what you want to talk about. I used to always stop my Dad mid-sentence when he was regaling strangers with our health issues with, "Can you please not discuss me in the third person like I'm not even here? This is my business!" Just yesterday, in gross unwellness, I said to a visitor, "Can you please just stop chatting?!" The talking was hurting my head and I just needed silence. Sit and visit if you want, but silencio por favor. And I also set limits on what people should say around Bambina. No one is allowed to call me "sick" because I don't want her to think that if she or anyone gets sick, like a cold, that they'll end up in the hospital. We use the words "aplastic anemia" even though it's probably like that Charlie Brown grown-up "wah wah wah wah" voice to her, because I don't want her to think that if someone goes to the hospital for something else and perhaps doesn't survive or comes home without an arm, that that will happen to me. My situation may be public but I have the right to ask others to speak to my child in the way I prefer. Whiners and naysayers get shown the door.

6. Finally, a thought from the Hasids:

I fear the things that cannot hurt me;
I yearn for things that cannot help me
What I fear is inside me,
and inside me too is what I seek.

And finally, finally: feel free to disregard this whole post. It's your diagnosis, your choices, and your life. I'm just some schmucko chatting into your poor hurting headache.

More Like Night Zero

So here's me.
Rumors of my demise--spread mostly by me--have been greatly exaggerated. Actually, this is me taking advantage of the couple of hours during the day when I feel good, before I get medicated/procedurated/nauseated and it's back to lying in bed and praying for unconsciousness.

Not sure when my stem cells will arrive; they said more than likely this evening, since the donor has to donate this AM and then they have to be "processed" and delivered. So it's kind of like Night Zero, as opposed to Day Zero. Apparently whatever "process" they give them makes the recipient nauseated {as an aside: is there anything in this entire procedure that is NOT designed to nauseate you?! What a total lack of imagination on the part of American medicine}. So the actual getting of the cells is less glamorous than once I had thought: me with a martini, cute summer dress, big Jackie O sunglasses, classily receiving my infusion, "would you be a dear, darling, and give me a refill?" Nope. It's more like me either passed out or rocking back and forth dramamine-style.

Hey--however it happens, as long as it happens. Darling.

Here Comes The Neighborhood

As promised, I'm down to negligible zero. On any other day I'd say, "Oh Sh*t!" But today it's good news. That means we've cleared out the lazy, unemployed squatters to make room for the new tenants. Here comes the neighborhood, with any luck.

Since today is my day "off" I actually felt like getting out of bed for once in four days. So I put on my flip flops, mask and gloves and (as usual, ie, sans reality-check) strode out of my room with the full intention of doing 50 laps of the pod area.

Or 6 laps.

That's how far I got until I came back in, unmasked, ungloved, and sat my tired a** on my bed till it's time to shower, another activity that now takes a good bit of wind out of my sails. It's pretty amazing how only 4 days of chemo can turn your cardiovascular system into Fat Joe's.

My other job for today is to hope they stop with all the bag fluid they're giving me. I know it's important for moving the chemo through the kidneys and out, but lordamercy, I haven't eaten in 4 days and my AM weight was exactly 6 pounds heavier than when I arrived. And it's not the weight that's bugging me, it's the feeling of puffiness, the sense that if someone were to pinch my cheeks that they might not spring back right away. And the woeful presence of the "cankles," which as you know I deplore. As proof, check me out just this morning:


I'm off for another 50..nah...25...nah...15...nah...2 laps! That's me: Racin' to Day Zero, baby.

My Middle Name is Danger

Yesterday and today were rough days. I was just sick as a dawg, feeling like I'd slept overnight under a car in the rain. My stomach was growling but I couldn't bring myself to eat anything. I felt nauseous all day. Then my blood pressure jumped and my face turned bright red and I thought my head was going to explode through my eyeballs.

The cause? "No doubt a reaction to the chemo. Don't worry."

Oh. Okay. I'll just ignore my head feeling like an ICBM, then.

Anyway, it's a little better now so I'm able to sit up and write. As all of the drama was going on I noticed a rather fun piece of irony to this situation. The nurse is standing in front of the IV pole dressed in a hazmat-protective gown and glasses, she's hooking up bags that have PELIGRO! DANGER! CARCINOGEN! written all over them, and here I am nonchalantly eating half a PB&J as the stuff in the Danger bags is being pumped into me.

I'm not entirely sure how the first people who thought of chemo managed to get anyone to actually try it: Okay, so I'll be protected behind layers of clothing and gloves so I don't get it near me--and YOU will eat it for breakfast!! Whaddaya say?!! Come on! Be a pal!

So this is Day Four. No more chemo to come. Just the rest of the side effects, which will last for a few weeks. Transplant Day Zero in 2 days. I've been assured that my immune system is, for all practical purposes, nonexistent as of today. My white count was .03, pre-chemo. Do I hear a 0.00 for tomorrow?! Tomorrow is the day of rest, which means I will be able to hopefully catch up on my Monica Goodling-Alberto Gonzales, John McCain-Barack Obama stuff, and comment accordingly.

Thanks again for all of your love and prayers. Believe me, I feel them all, especially when the day seems most peligroso.

Pride Goeth Before a Barf

Yesterday was my first day of chemo. First round at noon, second at 1pm, third from 4-10pm. I spent most of the day congratulating myself on being so unique and special that chemotherapy should not affect me like it affects mere mortals. I felt just fine and wondered what those poor people getting sick from it were doing wrong. Until around 11pm. Then I felt cold and started to shiver like crazy, then I felt wildly nauseous, then had a 103 temperature. Cue the barf. Bring on the Demorol.

Apparently the good people who bring us fludarabine and busulfan did not get the memo to make me the non-upchuck formulation. They'll hear from my lawyers, believe me. Other than the random nausea and general feeling of...what did Jimmy Carter call it?..."lust in my heart"? No, the other one. Right: "malaise," I'm otherwise good. I'm watching a lot of television. We get quite a few channels, including about six dedicated to different hospital departments. So on any given night I can watch programs on uterine fibroids, unexpected vaginal bleeding, care of one's catheter, film of a colonoscopy, you name it. Good times, good times.

The worst part of this whole deal (besides being away from Bambina) is the fact that I don't feel like eating. This is serious! The nutritionist came to see me today to ask why I keep ordering chicken and rice soup for breakfast and wouldn't I prefer eggs and bacon or something "more substantial". Ironically, chicken and rice soup at 8am works for me; hearing her even speak the word "bacon" at 10am makes me gag a little. If you don't count my two-year foray into kashrut (kosher) eating phase, or my four-year vegetarian/borderline vegan eating phase, or my three-year subsist-on-zone-bars phase, I'm pretty much an eat-anything kind of girl. Especially bacon. If you are a praying person, I beg you to a)pray that I get some new and smashing bone marrow and b) that I will soon be back in love with the bacon. 'Cause a life without bacon is a sad existence. Worse even than vomiting randomly and watching a fibroidectomy.

The Talented Mr. Hickman

He's under my skin and close to my heart. And he scores me some oxycodone to boot.

What a guy!

I'm speaking, of course, of my Hickman catheter. It's the one I mentioned earlier that is inserted through an incision near your shoulder, fed through the artery (vein?) and brought out through an exit hole in the chest. The lumens (small cables) attached to it allow them to take or give blood and to give meds directly, without having to keep sticking my already overtaxed veins.

I was strangely not at all nervous about getting it done, mostly because I was assured it would be done under "conscious sedation." It means that they don't render you unconscious; they simply make you not care that someone is feeding a tube through your veins via a hole they've just opened on your chest. It works, y'all. I could hear the doctors talking, could answer the anesthesiologist when she'd ask me if I was doing okay, could feel the pressure/small amount of sharp pain as they did whatever it was they were doing, but I simply didn't care. It was like I was in a weird altered state. I'm glad I didn't actually speak because sometimes I'd hear the doctors talking and think they were saying something else. I kept thinking they were talking about friends of mine, or mentioning how they'd hung out with my friends, or at one point, how friendly they thought my family's dog was. Then I'd have a brief one-second flash that it wasn't really happening and so would not say, "Yeah! Isn't he cute!?" Very weird, but all in all, a pretty cool experience; especially for someone who has never done any kind of illegal drug. Now I know why it's hard to Just Say No when you're too busy Just Saying Yes to questions no one has actually asked you or to statements not actually being made. Good times, good times.

Of course now Mr. Hickman is aching, so I asked the nurse for some Tylenol. She came back with a small pill and said, "They have you down for oxycodone for pain." Oh, okay. If you insist! Man, Mr. Hickman is a bad influence isn't he? Two Jimi Hendrix Experiences in one day...

Chemo starts tomorrow so I'll have more stories from that, I'm sure. In the meantime, I'm spending my first night with Mr. Hickman, and like all of my evening exploits, I'll be fabulous; he will be simply mediocre.

That's The Way It Works

Most likely no posts from me tomorrow since it's my admitting day to DF. Getting there in the AM, getting platelets, then getting my Hickman catheter in the OR. Then recovery, then chest x-ray to make sure the Hickman is in right, then at some point moving into my HEPA-filtered/secure air-locked pod. Chemo starts on Thursday.

I am a walking soup of contradictions. I'm psyched to get it started, but not psyched to be doing it. I'm thrilled to have family and friends around, but not thrilled to have to be social if I'm not feeling like it. I recognize that people want to spend time with me at the hospital, but I also recognize that there is a certain amount of mental solitude required for anyone getting their head in this game. I'm in awe of the people I've known who've done things like this and still managed to remember things like friends' birthdays and grandkids' names. I'm in awe precisely because I'm not one of those people.

What this means is that you will, over the course of the next few months, probably consider me to be some combination of impolitic, antisocial, forgetful and too tired to care. Lest you think I'm a complete a**hole, I apologize in advance, and I also offer felicitations in advance: Happy Birthday, your baby is so cute, tell me all about your trip again, mazel tov on your bat mitzvah, and good luck with the appendectomy. I swear I'll be an involved and gracious friend again when this is all over.

In the meantime, to answer the question that everyone is asking me (and which I appreciate, btw)--how are you doing?--I'll reprint my favorite piece of dialogue from the movie Three Kings (Clooney, Wahlberg and Ice Cube in Iraq War 1):

Archie Gates: You're scared, right?
Conrad Vig: Maybe.
Archie Gates: The way it works is, you do the thing you're scared shitless of, and you get the courage AFTER you do it, not before you do it.
Conrad Vig: That's a dumbass way to work. It should be the other way around.
Archie Gates: I know. That's the way it works.

That is indeed the way it works.

In the Unlikely Event of an Emergency Landing

So.

You remember those times when you are on a plane and the captain announces that they have to de-board you to fix a "mechanical issue?" Then an hour later they cheerily announce that you can all get right back on the plane because it's all been taken care of? And a small part of your brain wonders, "Okay, so what precisely was wrong? Maybe they should just bring out a new plane rather than deeming this too-broken-to-fly-one-hour-ago one shipshape?"

Well, I got a call from the DF "Captain" today telling me that my transplant is delayed because they have to "do additional blood tests on the donor." Like, what extra kind of tests would you not already have done? She was really nice and did the whole, "I know this is unsettling, but it's nothing to worry about, and if all goes well with his tests next week, should only set us back about a week and a half." She obviously can't tell me more than that about an anonymous person's health situation, but the question hanging in the air, screaming for an answer, was, "what exactly do you need to check all of a sudden that might potentially be a dealbreaker? And even if you do decide it's all good, what the hell WAS it you were checking for?!"

For various reasons too boring to detail here, I knew that the donor was out of pocket for a period of time, which is how we arrived at the transplant date of May 21st. So now I'm (tongue in cheek) starting a pool trying to connect the dots between where he was and why that might impact his ability to donate. My three current guesses are:
A. Took a trip to sub-saharan Africa minus the necessary shots, arriving home surprised that the doctors aren't psyched about it.
B. Been in prison on a 30-day Paris Hilton-style charge.
C. Never mentioned that he was a beef enthusiast in Britain during the late 1990's.

Any others?

In the meantime, I'm just being zen about the whole thing. However it happens is how it's meant to happen. Whoever provides the goods is who is meant to provide the goods. Although, I do reserve the right to move Mr. "Men I Love" Donor to my "Men Who I Believe Need a Smack" list. It's not beyond the realm of reason; most of the men on the former list also inhabit the latter. Although I guess I now have to worry about being moved from everyone's "Friend In Need" list to "Friend Who Pretends To Be Critically Ill to Wrangle Packing and Moving Assistance..."

It's On!

Okay.
So.

I get admitted on the 15th. Transplant on the 21st. And then we wait for the good stuff to happen.

Upon hearing this news, people who see me are giving me what I've called before "cancer face." That furrowed brow/eyes cast downward/head slanted sideways "how are you doing?" earnest inquiry. It's entirely well-meant but it drives me insane because I feel great, I look great (thank you very much), and I haven't felt so hopeful and positive in months. December and January were dark days, where I couldn't go forward and couldn't go back. Now, at least I'm on a path forward and I'm actually happy. Not happy-happy like "Woo hoo! A year in Punta Cana! I love it!" But definitely as in, "The only way out of some situations is through, so let's at least get the 'through' part started."

The coolest part of this is that my donor is a 23 year-old guy. How awesome is he? I don't know what you were doing at 23, but I sure wasn't concerning myself with some random lady's bone marrow situation. When I first found out his vitals I couldn't think about it without getting a little teary-eyed, just because I'm gonna owe this guy my life, and I'm stunned that someone is doing this for me, especially at 23. He's a perfect HLA match, the same blood type, and I am imagining that he is a dead ringer for Ewan McGregor. ;) He and I may never meet or know each other, but I've decided that I'm going to add him to my long list of Men I Love.

DanaFarber: Gentlemen’s Club

Today was a long day at D to tha F. I got all my "pre-testing" for the transplant done. Pulmonary function, heart function, etc etc etc. As does any hospital procedure worth the name, each of the tests involved either some kind of needle or some kind of nudity. The real fun ones required both. Not X-rated nudity or anything. More like Girl's Bone Marrow Gone Wild-style nudity. A boob flash here, an a** cheek there. You know, nothing that would get the joint closed down by Vice or anything. Just some good old-fashioned American T&A.

My favorite part of the day went like this:

DF Lady: I'll be doing your chest x-ray today.
Me: Nice to meet you.
DFL: You can go in here and remove your clothes from the waist up, then put on this robe so it opens in the front.
Me: Okay.
DFL: Have you ever been x-rayed here before?
Me: No.
DFL: Well, in that case, (goes to small closet, pulls out small piece of paper with two--stickers?----on it) put one of these on each nipple, please.
Me: (Looking at the round silver/metal things in the center of each sticker)--What? No tassles?
DFL: (No reaction). I'll be in the room across the hall when you're ready.
Me: (Alone in the room attaching my pasties and laughing at the bizarre hilarity of it) "Dontcha wish your girlfriend got a transplant like me?! Dontcha?! Dontcha!?" [for our older readers, that is a cheeseball stripper song made famous for reasons we will never know].

I could not stop laughing. I must have looked unhinged to this woman, but I literally could not stop thinking the entire time she was x-raying me that I had STICKERS ON MY NIPPLES for reasons I could not begin to fathom. Would the person looking at the x-ray have some additional knowledge of my lungs and pulmonary capacity as a result of being able to say, "Oh yes, I see the alveoli now that I've located the nipples..." Like, without pinpointing my...er...pinpoints they somehow would lack an essential baseline measurement of my...lungs? I guess I don't have enough of that there booklarnin' to help me understand the desperate importance of Nipple GPS to the transplant process.

Anyway, as I said, I was laughinglaughinglaughing. Until, of course, it came time to remove the stickers. If you've never removed a sticky object from your nipples (and those of you who have, you know who you are you dawgs), you ought to try it sometime. Be sure to take some Tylenol first. Because (and here is the first of what will I'm sure be many Public Service Announcements throughout the course of this transplant) nipple skin is not meant to meet an adhesive. Really.

Next time I'm gonna demand the tassles.

A Fitting Send Off

I'll post a photo tomorrow, but I have to share the details of my last few moments in DC with you now.

Can you guess how it went?

Well, as if God himself were telling me that moving on is a good thing, some crackhead (no doubt) smashed my car window and stole my suitcase. I went to bed at midnight, and by 6am when we were leaving the house, someone had done a Smash and Grab on my car.

The f&*%ers got all of my underwear save the pair on my butt, all of my favorite T-shirts (Scottish Mafia: Frugal But Deadly, Needs More Coffee, Nerds Are Cute, etc), all of Bambina's first aid supplies, all of my jammies, and a damn good pair of shoes I was so looking forward to wearing. I'm sure some other things were in there too but I can't recall them all at the moment.

So here I sit, ordering underwear online, hoping I can get away with one pair for two days (don't tell my mother...), wearing a random shirt, an outdoor fleece and some surgeon pants instead of jammies, and alternating between furor at the total violation of not only having someone take something that is yours, and annoyance, wondering where my underwear is and who is touching it. Like, are they going to sell my purple thong for...pardon the pun...crack money? Who is buying used underwear and some Old Navy pajamas? Who ARE these people?! Why not just bring it back when you realize there is nothing but drawers in the suitcase? Not, I suppose, that I'd be wearing any of them again anyway now that Drunk High Dude has handled them...

But anyway. My point: sometimes a place or an experience leaves you with the lingering joy of good memories, warm feelings, and a soul-deep ache in the moment of departure. Other places kick you in the (naked) ass and send you on your way in a cacophony of shattered glass and the flapflapflap of taped-up plastic blowing in the wind.

Movin’ Out

Tomorrow early AM will begin the road trip to Boston. It will end almost ten years here in DC. There are so many things about DC that I will miss: the Capitol view every day, the constant hum of politics in the air, not having to drive anywhere, having one of the first things Bambina knows how to say be "Thurgood Marshall Federal Building..." Living here provides you with an education and an atmosphere that you can't get anywhere else. It's fun, it's very serious, and it's very fun to watch other people being very serious about moronic stuff.

I'm going to miss seeing the female Hill interns crossing the street in their tits-out shirts and flip flops, as if they think that attention equals credibilty. I'll miss seeing the male interns wearing suits with baseball caps. Or, more accurately, I'll miss laughing at them. I'll miss the motorcades, the minor political celebrity sightings (Oh my god! Look! It's Tim Russert!), and most of all the sense of history and patriotism inherent in living in DC...Not that Boston lacks for history and patriotism, of course.

I won't miss the random crime that always occurs just one block too close to my house to let me shrug it off, the reassessment of my property taxes that now rivals communities where they can actually send their kids to the schools those high taxes are funding, and--of course--not having representation in Congress. Now when someone says, "Call your Senator!" I will actually have someone to call.

Aaah. A little change might do me good.