Day 92 Is Close Enough; or Heaven and Hell in 24 Hours

Awwwww Yeeeaaaaahhhh! That was me just a couple of hours ago after mine and the BBDD’s Drive-By Pizza Slice Joy Ride. Sweet Sufferin’ Sally, it was awesome. That drive-by past McDonalds for fries came as a result of one targeted pizza place not having any slices (whaaaaa??!) (and as a mini-photographic shoutout to my girl J and her peeps down in MD).

So how did this fast food bender happen?

The Good Doctor gave the greenlight today for eating fresh fruits and veggies and takeout food again. Essentially, he lifted most of my food restrictions. Still can't have deli, sushi, booze, unpasteurized cheese, salad bars, or any fruits and veggies outside the home. Reason being that deli meats are sitting around (albeit in those cases) and who knows how many people are reaching in and touching them (they also might be put on one of those cutter machines that previously cut something I can't eat). Sushi and booze need no explanation. His explanations for the rest are very entertaining, if frightening. Unpasteurized cheese: two patients almost died from contracting meningitis as a result of listeria. He said it's ludicrous to survive a bone marrow transplant, avoid all the nasty fallout from GVHD, and then die...from eating cheese. No argument here. Salad bars he said should just be outlawed for everyone. There is no way to keep the food in a salad bar at the right temperature. The food at the top is always warmer than the stuff near the ice in the bottom, especially in those deep containers they sink into that ice table. Not to mention all the people ducking under the useless sneeze guards to get that last tongful of grated cheddar cheese. Not to mention the tongs themselves that always end up lying in the food... Nuff said. Fruits and veggies outside the home, same as the deli. Did they wash the lettuce enough? Did the person wash his hands before putting the lettuce on my sandwich? The basic rule is that wherever you can’t control multiple variables, don’t eat it.

So I immediately went home and ate a nectarine and some raisins. And then saved my appetite for the real food later. I'm sitting here wondering when the acid reflux will kick in, but enjoying it nonetheless. Which is good, because I have a bone marrow biopsy tomorrow at 8am. Yeah, you read that right. ANOTHER bone marrow biopsy. Nice. I've decided to participate in a study testing a drug that they think will help prevent GVHD. I'm doing it so I never have to wonder, if I do get GVHD, whether I could have prevented it. And also to advance medical science blah blah blah. The price for participating in the study? The biopsy "to get a baseline." Kill me now.

The study starts on my Day 100. The meaning of which was characteristically succinctly broken down for me today by my doctor (who I am now ready to officially announce is the latest recipient of my Non-Sexual Crush honors). I was sick last week, feeling so unbearably unwell for about two days with a nice, quick recovery. I asked him about it today in my usual Pollyanna way, whether maybe my immune system fought it off and maybe I'm now building my own immunity to diseases? He looked at me, gave a small laugh, and said: "No, no, no. You have one of the worst immune systems I've ever seen. It's terrible. And don't let anyone tell you any different."

Oh my lord, I am in love with this man! (Thank you sir! May I have another?!) He reminded me that getting to eat food is not the same as having an actual immune system. All the pills I've been taking are immunosuppressives. He said "you don't have the ability to build any immunity to anything right now. So no, you didn't fight anything off, you won't be able to for many months, and you aren't 'building' anything from any infections you get. The goal is to have you not get them for specifically that reason: they are extremely life-threatening." Oh. My bad.

Anyway, it's really all good, even with the ongoing lack of immunity. But that just might be the cholesterol endorphins talking. They kicked in immediately upon first bite, and I was in cheesy drunken heaven. As we were leaving pizza place #2 I said dreamily to the BBDD, "Even if I go tits up two months from now from some ridiculously stupid virus, I just want you to know that this is the most fun I've had in months." His response? He looked at me like he was about to pat me on the head and said, "Aww. That is so sad!"

I'm in good hands all the way around.

Incremental Improvement

A long time ago I posted a story about my old job's annual employee retreat wherein an old Vietnam POW (whose name I forget so I call him The General) gave the keynote "speech" which essentially involved him telling us to cowboy the hell up, quit our bitchin' and ask ourselves when we feel down, "Am I getting my fingernails pulled out? No. Am I being left out in the blistering sun for 18 hours a day till I have third degree burns? No. Am I eating cockroaches to save myself from starvation? No. Then STFU and git 'er done!" In review I thought it was an excellent attitude adjuster; it was simply ill-timed, since we came to the speech from a Friday night happy hour where we'd been posing for photos and drankin' like it were goin' outta style. So to walk into the auditorium all festive and buzzing only to be met with, "You think YOU had a bad day, punk?!!," was a little mentally jarring.

The one thing The General did touch on was the practice (which I also mentioned in that post) of Incremental Improvement. It is the practice of doing something better every day, doing a little more every day, doing something more every day. For him in POW camp, that thing was pushups. All of his men had to do pushups every day to keep their morale and physical condition up, even when they were starving. He detailed how he determined that every day he would do just one more pushup than he'd done the day before. Some days it didn't work out, but he tried every day to do Just One More. He says this practice saved his sanity throughout his many years at the Hanoi Hilton.

Well, friends. I have not had my fingernails pulled out with pliers. I have not eaten cockroaches three times a day. I have not served my country in any sense, and certainly not with the honor and commitment of the men in the Hanoi Hilton. Let's get that out of the way. But I have had a pretty sh*tty couple of months wherein my body has become something not instantly recognizable to me, a woman who took great pride in her biceps and shoulders and her ability to do 30 pushups (and not the girly kind on the knees) in one minute. I'm now thin (and not the kind I always wanted to be). I have lackluster muscle tone. Where I'm not thin, I'm random flab. And The General was right: when your body atrophies so do your morale and your spirit.

So last week I began the SSHaggis Incremental Improvement Initiative. I did one slow, poorly-formed push up. My arms ached afterward. From ONE pushup, y'all! Bambina laughed at the sight of me doing it: "What you doing, Mama?! That so silly!" I said, "It's a pushup!" And she instantly dropped and did 4 really good ones, just to show me how they're done. I panted, "Mama will do four next week."

Y'all. Today I am on 6. Tomorrow I'll do 7. What does any of this have to do with my bone marrow, you ask? Not a damn thing. But it makes me feel better that I'm taking a little bit of myself back from all the post-chemo/massive pill-taking fallout. So much of this process is out of one's control. My eyebrows are growing in curly (gross!), my skin is itchy and weird all the time, my ability to be in the sun is literally zero at the moment, I can't see my friends till next summer, my risk of GVHD starts at Day 100 and ends in about three years, I can't do any real cardio for a while, and stuff in general just doesn't feel like it used to. All I can do to feel like I'm still steering some small section of the Good Ship Haggis is to take care of the parts of me that will comply with my authority. Namely, my muscles and my mind.

So I'm doing it. And that sound you hear is the Bambina blowing by me in the pushup contest... :)

The Family Dog

Do you know the creature in your home who gets so excited when you start organizing yourself for a walk? The one who stands expectantly at the back door when you jingle your car keys? Who starts hyperventilating as if to say, "Can I come? Can I come? CanICanICanI??!!" Who acts like she's just won the lottery when you indicate that, yes indeed, a car trip is in her future?

In this house, that's ME.

As you know, I don't get out much these days. And people can't come in much either. So the only way I get to see other non-related humans is to go for a car ride when others are running errands. It may sound sad and pathetic, but the way I see it, as long as you park in the shade and leave the window open a crack it's all good.

I seriously get excited to ride around (with my head hanging out the window, tongue dangling?), even just to mail letters at the post office. Not that I go into the post office of course. I sit in the car and read. Or call friends. Or, honestly, mostly people-watch. I had forgotten how loud people talk on their cell phones. How people wear their clothes unattractively tight. How bad dumpsters smell. (Hey, I've been in my share of bad parking spots...) But I'd also forgotten how cool it is to look around and see people all across the spectrum of beauty, and how some people are beautiful in seemingly non-beautiful ways. The old man getting into his car who looks over and tips his imaginary hat to me a la 1943; it makes me think that whatever he looked like back in the day, his charm probably assured him his share of dames. The woman with two kids who has crooked teeth but a radiant smile nonetheless; her smile says there's a lot more to her than meets the eye. The high school boys running pre-season track down the sidewalks. Running in their own moments, oblivious to the realities of life that await them only a few years in the future, realities that will sometimes make them remember with longing days like today.

Who knows? Maybe someday one of them will find himself in a car in a parking lot wearing a mask, and he will see tomorrow's boys running, reminding him--suddenly, poignantly and bittersweetly--of all the things he told his 16 year-old self he'd never forget.

I Feel SiCK

Today I received the Summary of Benefits for my stay in the hospital for my transplant. This does not, nota bene, include any blood products (including the stem cells themselves or their collection), any outpatient visits or medications before or since my stay, or any care provided by any doctor not employed directly by the hospital itself, ie, by the cancer clinic next door (guess who employs my doctor?).

So "summary" is a bit of a strong word. It's more like a level 1 subtotal, with levels 2-5 to follow, to be further followed by a final grand total summary when all is said and done.

Ladies and gentlemen, I give you:

$224,473.77

As the cliche goes, "that's not a typo."

I don't know about you, (and since you'll note that most people who are sick are not able to work/earn a real living), but if I didn't have insurance, this entire year would bankrupt me. [My medications alone are about $3,000 per month]. In fact, that bill alone would bankrupt me. In fact, the cost of blood products and the stem cell-related stuff alone would bankrupt me. And that would be my best option: to file for bankruptcy and hope the hospital would forgive the debt or give me a 40-year payment plan.

Thank you God that I have unbelievably good health insurance. Thank you God that they have no lifetime maximum. I ask you, God, why I am in the tiniest minority of the American population regarding such insurance.

I challenge anyone to tell me that Michael Moore's SiCKO does not have an extremely valid point to make. Obviously, those who disagree tend to have the best health insurance and cannot fathom how a person with obvious cancer is denied a lifesaving treatment or how everything can possibly cost so much. They should feel lucky that they have what they have, rather than doubtful of the state of affairs concerning our healthcare system. I sure do. I thank God every single day--and especially on days when I receive things in the mail reflecting a quarter of a million dollars in PRELIMINARY charges--that I have the insurance I have.

So, good for me. But isn't there a larger issue with our health care system beyond the simple issue of good/bad health insurance? An issue that even those with stellar health insurance and a deep enmity for Michael Moore should care about? Isn't the issue of actual access to healthcare something we need to address lest any kind of universal coverage become meaningless? I'm speaking, of course, of the current wait times for appointments, regardless of what quality of health insurance you have. Every woman knows this one: "We can see you for your pap smear/gyn exam in October." "Oh okay. But I run out of birth control pills in May, next month [or, I have some pains in my abdomen, etc]." "Hmm...I'm not sure what to tell you. We can put your name on the list and if any cancellations arise we can call you." "Oh, okay." Rich or poor, insured or not, I am certain that almost all women have encountered something very similar to this conversation.

Even for pediatricians the wait is staggering. Luckily a lovely ped through family connections here in Boston agreed to see Bambina even though his practice was already closed to new patients. I literally lie awake at night pondering what the Hand Foot Mouth situation would have been like without a doctor to call; or worse, heading to an ER to sit for 10 hours with a sick and cranky three year-old (me, who cannot go into crowds). Or trying to get her into preschool without anyone to perform the required physical.

My transplant doctor told me just today that my dermatologist had just opened a new post-transplant specialty practice which is why he saw me within a week. "If I'd tried to get you into one of the senior dermos here it would have been three months minimum." And this is the head of transplants talking! Even he would not have been able to get me squeezed in. Imagine trolling through the phone book and cold calling! Or imagine trying to get an appointment to rule out uterine or prostate cancer, and being told to come back in November. The physical, not to mention emotional toll, is unspeakable. Surely this issue, whether we believe in universal coverage or not, is something everyone can agree needs to be addressed?

Think about it. And think about the difference in an as-yet-undiscovered tumor's size over a 3-month wait. Think about the dangers posed to a person with dementia as you wait to confirm the diagnosis for 3 months and therefore must wait for insurance to help pay any costs of care. Then think about the kid who died last year of an infected tooth because his mom couldn't get an appointment for him due to lack of insurance. It's time to recognize that just because your health situation may not be in shambles, most other people's situations are. And then ask yourself what sliver of good fortune or insurance company fine print separates you from them.

That thought really will make you feel SiCK.

Open Mouth, Insert Hand and Foot

I've been a mom for two and a half years, so you'd think I'd have this stuff down by now. Friday afternoon Bambina did the following completely out of character things:

1. Refused ice cream
2. Said she was hot and tired
3. Just wanted to "sit and read on my bed"
4. Became Bambina "Clingy" McClingstein
5. Thereafter decided that I was not meeting her needs and began to wail for "Dada"

So I figured I'd take her temperature just to see what was up. 100.7. Not dire, but for a kid who is, like her mama, usually a high 97/low 98 for a normal temperature, I was a bit concerned. So I called the Dada who said, "Did you give her some motrin or tylenol?" Oh. Yeah, right. Of course. So I gave her the motrin. After which she fell asleep so fast that I was positive she'd passed out. So I started to rouse her and move her, which did work, but I still was a little bit concerned. So I called my Mom to ask if it was okay for a kid to sleep with a temperature as long as I had ascertained that she hadn't actually gone unconscious. She offered her thoughts which I thought sounded reasonable, but then couldn't bring myself to leave Bambina alone "just in case." I recognize that I sound like a completely unfit mother, but Bambina has been sick two (yeah, TWO) times since April 2005; last summer and this summer. That's it. So every time this happens (as in, last time and this time) I realize how inexperienced I am with sick kids and vow that I will read ahead in the Mommy Textbook handed to you either in the delivery room or in the location of the official adoption, to pre-learn 4 and 5 year-old medicine dosages and treatments. (You did get your handbook, right?) But then I don't and I am once again calling my Mom to ask inane questions like, "is it okay to sleep with a fever?" while polishing my Mama Of The Year awards on the mantel.

Anyway, not for nothing, my next thought after the sleep/fever one was "Should I be around a kid with a fever?" So I called the Dada again to see if he'd come and tag in just in case I was on dangerous ground. He told me to go get a mask on. I couldn't because Bambina was asleep with her head in my lap. So a brief 20 minutes later, he tagged in, I masked up, and shortly thereafter Bambina bounced back. Until...we noticed on Saturday that she had big purple spots in her mouth and she started saying that her mouth hurt and her tummy hurt. So we called the after hours line where we got the "possible strep" diagnosis. Followed immediately by my call to MY after hours line to discuss the "possible strep" diagnosis. Followed by early Monday AM calls for same-day appointments with pediatrician and transplantatrician respectively.

After all the "S word" drama of the weekend it turned out that Bambina had something much, much worse. Hand, Foot and Mouth Disease. No, it's not actually medically worse than strep. But it sure sounds like it, doesn't it?! Like some livestock affliction that has leapt to humans and for which there is no cure. Well, actually, that part is correct; you just have to wait it out. It's a very common virus found in child care settings (as usual, passed mainly by contact with fecal matter; which begs the question of what little monster's parents have not taught hand washing at home). Fair enough. But for the parent it is akin to being told your kid has lice (another affliction I'm assured will be visited upon my home in years to come); ie, it's common and normal and yet just mortifying in the extreme to imagine that my daughter ingested somebody's fecal matter particles. Saints preserve us.

So I was flipping out that my poor, dear precious child has this terrible virus clearly created by dirty, nasty ruffian children whose parents have no sense of hygiene. Which is when I called my doctor back and said ixnay on the epstray; it's actually (I'm ashamed to admit, doctor) HFMD. His response? "Ah yes, the coxsackie virus. Well, that's going to be a bummer if you get it. It won't be fun, but we'll figure something out." Me: "Should I wear a mask and gloves around my daughter?" HIM: "I would say that the cat is already out of the bag at this point, wouldn't you?" ME: "Well, should I avoid getting near her on the potty?" (Yes, I said "potty" to a grown man). HIM: "If you can, but let's be honest. When you have kids, there is no such thing as personal hygiene. Do the best you can."

So here I am, awaiting my mouth sores. From somebody else's kid's butt.

How was YOUR weekend?