Mohs Definitely

No posts till Monday night, I'm afraid. I'm getting my dreaded "Mohs surgery" tomorrow, and I'm told it's an all-day party. I'll let you click here
Wikipedia for the wikipedia entry with photo goodness (barf) because I don't have the stones to really dissect it all for you (hah! get it?! dissect!? heh....GULP!). Needless to say, I'm not entirely psyched about my Monday. Which is only four days before Friday, on which I will be getting the squamous cell thingy on my chest cut out too.

I suppose if you have to have multiple dermatological excisions, you might as well stack 'em up, right? Right? Or, as my transplant doctor said, "Your bone marrow is doing great. Now you just need to make sure you have some skin left to enjoy it." Well, I guess that's up to "Dr. Mohs," isn't it?

Putting the "Communicable" into "Community Learning Center"

It's Bambina's third week of preschool and--surprise, surprise--she came down with her first cold of the year this evening. If you are a parent you will identify with my feelings of simultaneous despair and sympathy: a combination of "Aww, hell" and "Poor wee lamb." You realize when helping a preschooler through the miserable panoply of cold symptoms that nose-blowing is not an innate skill, nor is finding the sleep position that allows you to get a modicum of rest without backing the phlegm up into your throat. Gross, I know. But if we can't be candid here, darlings, where on earth can we be?

Bambina does not get sick that often, so everytime she does I learn something new. Mostly because I flip out and start combing the CDC website for information on such frightening (and no doubt Outbreak-worthy) symptoms as "runny nose" and "low grade fever." I learned tonight that over-the-counter cold remedies have not been proven, in any of multiple studies, to have any effect on preschooler's colds, be it on severity or duration. Antihistamines also do not work. (A particularly poignant fact since Benadryl's inventor, George Rieveschl, passed away today. A generation of airplane-traveling parents salutes you, Dr. Rieveschl!). The only solution is hydration, rest if necessary, and perhaps Motrin or Acetaminophen, if the child seems to need it. No magic ways of making a preschooler's cold either easier or shorter, which of course is a tremendous blow to the innate maternal need to ease your kid's physical pains.

So I'm sitting in my bed with the monitor on, listening to her sniffle and breathe boogers. I, of course, will not be the one to go to her at night if she needs anything since I'm trying to cut down on my rhinovirus uptake for the next 9 months or so. This is a deeply distressing fact, even though I know she will be well taken-care of by people who would throw themselves under a bus for her. It's not the concern for lack of care that bugs me; it's the fact that I can't really hug her or sit with her while she's sharing droplets via hand and mouth. The doctor warned me back in April that this would happen, but we all agreed at the time that the paramount concern besides my health was ensuring Bambina had as normal a life as possible. That meant sending her to preschool, which meant running the risk of her bringing home a little something from Abby or Tyler (there's always an Abby or a Tyler, isn't there?), which meant me keeping my distance for a week or so till she wasn't contagious. So here we are. And there she is. Talk about subverting the innate maternal instinct, huh?

The good news is that Bambina is loving preschool, is making friends (if three year-olds can consider any human besides themselves as truly relevant), and is learning so many new things. For instance, just the other day she mentioned that "Ando"* (*names all changed) is in her class. I asked if Ando is a boy or a girl. She said, "Ando a boy.[two second pause] He pee standing up." (See? Human anatomy!) She also said authoritatively while doing a puzzle with me, "Mama, you not concern yourself with my pieces. You just worry 'bout yourself, Danielle!" I asked her about Danielle: "She bossy." (Learning teacher-speak for "shut your cakehole, Miss Four Year Old!"). I then asked her if she and Ando were friends: "No. I not like Ando." "Well, why not?!" "He have runny boogers."

Wait a minute.....!

When I next see Ando's mommy (oh, like, next year!) I'm going to thank her for sending Chronic Cattarh Ando to school when she should have kept his dreepy a** home watching SpongeBob.

At any rate, the subject of Ando gave me the impetus to have my feminist discussion with Bambina about how she is not *missing* a penis; that girls just don't need one. It arose today as she attempted to pee standing up, announcing to me that "I have a penis!" "No, sweet girl, you don't." "Yes I do! Look! Me standing up!" I resisted the urge to Lloyd Bentsen her with "Sweet Girl, I know penis; I have worked with penis. You, sweetie pie, do NOT have a penis," but I resisted, recognizing that I haven't shown her the tape of that debate yet. But I did take advantage of my last year of making jokes she won't get by saying, "But on that topic, we're having meatballs for dinner. Wash your hands and come downstairs."

Mother of the year, baby, mother of the year. ;)

The Yom Kippur That Isn't

So I had this whole Yom Kippur post I was working on. I was struggling with it, trying to find a way to say that it's a very important and necessary holiday, but one I struggle with, especially in my current situation. The liturgy is such that there is a lot of prostrating oneself before God and tapping one's chest while reciting sins you and the community have committed. Much of the service uses the allegory of The Book of Life for the coming year, ie, that God is--as we speak--either inscribing your name in it, or He is not.

Maybe I struggle with it because the fact of wondering if I’d really be around next year was a little bit too real sometimes, and perhaps because the notion of begging God for forgiveness so you can “live” just seemed like too much self-flagellation for a human with a modicum of dignity. Not to mention my thoughts at various times during the past year wondering when God Himself, if he had a shred of decency, was going to pick a day to fast and apologize for his sins of commission and omission involving ME.

Having said that, I do recognize that the entire purpose of the holiday is to act and think with humility and without self-satisfaction (hence no stiff-necked “too much self-flagellation!” declarations). It is to get you to a place spiritually where you are able to be honest with yourself and God about what atonement is required and what work you need to do to be a better person in the coming year. I do get it. I understand it. I just find the liturgy to be a stumbling block to me really embracing the holiday especially during seasons when one’s life is not awash in sunshine and lollipops.

I guess my ambivalence is coming from a desire to not be ambivalent. I don’t want to go through the motions of atoning where I end up mouthing some insincere pseudo-confession that just ends up being one more instance of the very sin I’m supposedly confessing. I’m not committed to being a lying, thieving, defaming jerk in 5768; I just don’t really feel like I’m in a place where I can credibly and spiritually do right by the intent of the holiday to atone for 5767.

So this is the Yom Kippur 2007 post that wasn't. I was trying to find some articulate and learned way to say that I'm taking the year off from atoning. I had words by Martin Buber, the Rambam, you name it to try to explain. But all those wise words still failed to convey the nuances and shades of how I am feeling this time around.

And then I remembered this, which nails it like only this philosopher can:

There's an empty spot I've always had inside me. I tried to fill it with family, religion, community service, but those were dead ends! I think this chair is the answer. --Homer Simpson

My 365 Day Plan

Today is Day 114 in my neverending, yet so far thankfully unremarkable, bone marrow saga. The day holds no particular significance, but it does confirm my belief that the notion of taking this whole thing "day by day" is wildly off the mark, at least for me. I know the day by day approach works for alcoholism recovery, for counting down the last three weeks of a job you can't wait to leave, etc. But for a 365 day house arrest it simply guarantees constant frustration. To be fair, it's not like I'm in a Turkish prison eating cockroaches in the dark. I have pretty swank digs, I've got my family, I've got this laptop--my lifeline to the outside world. No one need have a pity party for me. Even in my current good but precarious health, I'm still doing exponentially better than much of the world's population, so gratitude for my blessings is a given.

However. If I got up every day and said, "Hey! Today is Day 113, 114, 115..." I'd probably open a vein. Obviously I am fully cognizant of the fact that every day post-May 29, 2007 that I wake up and say anything is a beautiful day. Believe me. But the long slog through 365 days where you can't really go anywhere or do anything, where you can't walk your kid into her preschool, meet her teachers or her friends, or just take her to the library; where you can't buy your own underwear or deodorant, can't offer any real help around the house (no laundry, no cleaning, no going to the basement, no touching or inhaling cleaning materials) even though you are the only person who actually would have the time to get a ton of stuff accomplished, truly is a very long psychological slog.

So I've given up the notion of taking anything "day by day" and moved on instead to "random milestone by random milestone." So we've had the 100 days. We will now move on to November 30th, a day that is all about the math. On November 30th I will have officially completed more of the 365 days than those that remain till next May. It's my 50% +1 milestone. Thereafter, we will celebrate at 12:01am on January 1, 2008. Because once it's 2008, I no longer have to say that I'll be better NEXT year; it will be THIS year. And, really, once you're in January, how far away is May really? If you're doing it day-by-day it's 150 days is what it is! But if you're counting down through the Hallmark holidays, it's but a small wisp of time till I'm back in the game.

And believe me, that game is gonna get UGLY. I've got lots of missed shoe shopping to make up for. How much? Oh, about 365 days worth.

The First Hundred Days

Albeit a wee bit anticlimactic since I've already enjoyed my pizza binge and Thai food bender, today is Day 100 in the ongoing (seemingly neverending?) saga of E and her bone marrow. It was so anticlimactic that I was reminded of it only by looking at the calendar and seeing that I had, months ago, written in huge letters "MAMA'S HUNDREDTH DAY!!!" as if I was already tasting the spring rolls...

Nevertheless I figured I would acknowledge the day since I've made such a big deal out of it since April. At the very least, even knowing that there is no real medical significance to it beyond the fact that imminent danger from cooked food has passed, it's still kind of nice to still be here to find the day anticlimactic. In the daily grind of getting better it is surprisingly easy to forget sometimes that it was only January when I was in the hospital with a 104 fever, being told by the doctors that now might be the time to ensure my affairs were in order. To be fair, I think my brain intentionally makes me forget that day, so traumatic it was to be delivered that information at 34 years old with a small child at home. But I think that today, on Day 100, it is helpful to recall that night because it was the beginning of my transplant process. It was the night I could no longer kid myself that life was going to return to normal, that my disease was not progressing, that I was going to escape having to face it head-on. It was the night, quite frankly, that we prayed I'd live to be able to get a transplant. So now, transplant underway, as I worry about getting GVHD or about getting a massive infection, it's good to remember that I'm still extraordinarily lucky to be alive to be worrying about it. And that's never a bad feeling to have.

So what grand words do I have on this, the day I've been alive 100 days? First, on a personal level, that there will never be words adequate enough to thank my donor who, more than anyone, has made these 100 days possible. Without her, it's all just doctors and hospitals and patients waiting around with no stem cells. From one small act on behalf of a stranger, my donor has given a whole family a very large chance at a normal life.

Second, on a more universal level, wonderful things can be born out of seeming catastrophes. The Chinese word 'crisis' is comprised of the characters "danger" and "opportunity..." Just kidding! That's a terrible, pseudo-intellectual cliche. It's factually correct, of course. But the lesson I have learned over the past 9 months is that the word for "crisis" is really comprised of "danger," "crapping your pants," and "cursing the God that made you."

Followed much later by total silence because you can't find the words to say thank you for all of your blessings.