Not There Yet

A quick midday post during lunch before I get back to my ill-advised participation in the PTA event tonight. Once again, what was I thinking?! I have beaucoup thoughts on the auto bailout, the Fairness Doctrine, the potential closing of Gitmo. But for now you will have to settle for bitching and moaning about committee work.

Although, I think I have a pretty good out from future events. My transplant doctor emailed me today to tell me my CD4 count (the measure of how well you fight infections; 100 is pretty much a basement level for safety). Oh yeah. It's 29. Which is to be expected considering the quantity of immunosuppressives and the duration I've been taking them. I've been immune suppressed for more than 18 months, and will be for probably another year (if all goes well), which is not really recommended for anyone. It was a wee bit of an unwelcome reminder that life is not back to normal in the least. Life is good; don't get me wrong. But it can sometimes be easy to jump in with both feet when I shouldn't even be dipping a toe. So, message received: do not get too cocky with the wee bit of health I have, as "normal" seeming as it may be.

On the subject of health, I'm still waiting for all the Lyme symptoms to go away. Now I'm down to puffiness in my hands and ankles. All the rash is gone, the joint pains are gone, but damn if I don't look like Puff Mommy. I believe the term is "cankles," if I'm not mistaken. And the bending of fingers early in the AM is not entirely without effort, due to said bloatation. So, two more weeks of antibiotics and hopefully it will all be gone.

In the meantime, have a lovely weekend; I'll be back on Monday to hector you about being thankful and grateful in advance of the holiday. :)

E For Victory

After an awesome couple of days in NYC and NJ, we are now at my mom's house. Using dial-up to access the internet. It's like stepping back in time, I tell you. But in all good ways. I haven't slept in my parents' place since I had that Angelina dream about my Dad a couple of weeks/months after he died (or, was it the time I woke up and thought it was morning but it turned out to be the exact time on the clock that he had died?), so it's actually really lovely to be here again. Even though the place has lost the Crazy Scotsman look it used to sport (e.g., massive clutter, nail clippers in the pocket of the lazyboy chair, clipboards with recipes attached all over the place), and even though this place in Del Boca Vista has never been my home, it feels like coming home nonetheless simply because this was the last place I was with my Dad before he died in the hospital. My mom has kept the "Dad stuff" that matters and mercifully heaved the exceedingly large quantities of stuff that doesn't. So now it's a totally cute Grandma apartment, full of kids' toys and play kitchens and whatnot. And it's also still the place I remember him reading to Bambina and taking her on leaf-collecting walks. So it's really happiness-inducing to be here.

We did NYC yesterday. Took a horse and carriage ride through Central Park, played on the Big Piano at FAO Schwarz, went to the bathroom at Bergdorf Goodman, rode the subway, ate bialys from Kossar's, and blew our credit limit at Economy Candy. Bambina had her portrait painted by one of those guys sitting around Central Park. He only used black oil paint and various brushes, and he did a pretty decent job. There was a wedding going on at The Plaza Hotel which had moved outside; a photographer was taking a picture of the groom serving the bride a cone from an ice cream truck. We walked by and my first thought was, "Oh that's so sweet!" Then I looked at the picture being taken: a groom handing an ice cream cone out a truck window, over which was written, "Mister Softee." Not exactly the most auspicious beginning to marital relations. But that's going to be one hell of a photo!

We then hung out with our almost 90 years-young GiGi in Jersey, eating every meal at various diners and just relaxing and chatting with her. Then today we visited BB's grave for the first time, which was nice. In Jewish tradition you leave a small rock or stone at the grave to show you were there. Bambina brought along her stinky stuffed sheep, Stephan, who also "wants to leave a rock." So she and I went rock searching while the BBDD and GiGi chatted with BB. She found some of that "onion grass" (it's long grassy stuff that smells like onions when you pick it), and because BB did not like his vegetables, she put them on his grave because vegetables are good for him. It was pretty sweet, even though she really does not get the concept of death. She gets that he is gone and that his headstone says his body is there but that his soul is with God. Whatever that means. Nonetheless, she felt good that she left him some greens.

On the way to DC, we stopped off at my old haunt, Johns Hopkins Hospital, to meet up with my wonderful old nurse, Nancy. I had joked that I was going in for "my victory lap," but to be honest I was a bit wobbly for a few minutes there. My only experiences at that hospital involved me being sick, scared, and sick of being scared. I spent 3 days a week there getting various blood products, feeling sick as a dog, tired as all hell, and watching my blood counts drop on a weekly basis. I got all kinds of bad news in that building: that I was going to miss my friend C's baby shower, that epogen was not helping my blood counts, that I was not going to have a 35th birthday party with friends after all, and that I was really really fucked if I didn't get a transplant, like, tomorrow. So for whatever ludicrous reason I somehow thought I'd just walk in there doing my Rocky dance and no harm done. Weeeel. I forgot that in order to feel the victory in having overcome something, your brain has to take you back to the stuff you overcame. And I hadn't quite prepared myself to have the dread and fear and angst come flooding back to me as soon as I stepped through the revolving doors. But there they were. So I was back-footed for about a minute as I talked myself down from my bad nostalgia, back to present day E-ville, where I am not wearing a mask, I am not imminently going to die, I am not going to miss another damn birthday or baby shower of people I love. Fought back some tears. Pulled my shit together and walked in smiling. It was great seeing Nancy, who had never seen my full face without a mask, and great standing in that building on my own two feet, with pink cheeks and a smile. But as we drove away I said to the BBDD, "It was so great to see her! Let's never go back there again, okay?" From my mouth to God's ears, y'all.

So tomorrow is the Old Neighborhood and old friends. Places, again, I haven't seen since leaving in a cloud of fear and illness. It's going to be fun. Right after I give myself that moment to acknowledge--and be okay with the fact--that it wasn't always so good. What the hell. That's still a victory lap. Isn't it?

Save Donovan Sands

Okay, New Englanders (and everyone else too). This Sunday there is a bone marrow drive at Lasell College in Newton, MA to help find a bone marrow donor for 8 year-old Donovan Sands. Donovan has Dyskeratosis Congenita, a variant of which disease caused my Aplastic Anemia. Donovan will not survive without a transplant, and neither would I have. And having lived through the fear and drama of such a thing, I can barely bring myself to ponder the same situation for an 8 year-old and his parents.

So if you are in the area, please go give a cheek swab (no needles, I promise!) and see if you might be his match. If you aren't local, please consider registering with the National Marrow Donor Program. Even if you're not a match for Donovan, you might still save someone. My donor, Jaime, was on the registry because she attended a drive for a family friend. She wasn't a match for her, but she was for me. Sheer luck and circumstance (and HLA-typing) brought us together. I KNOW that Donovan Sands has a match. Everyone in the world has a match. But if you're not on the registry, we don't know you're there. You're sitting on one measly pint of stem cells that might keep an 8 year-old alive.

So. Off your bone marrow-rich hindquarters--and hie thee to a drive. Thank you.

From the Newton TAB:

Donovan Sands is an 8-year-old who is suffering from a highly rare, but terminal genetic disease. He has Dyskeratosis Congenital (also called Zinsser-Cole-Engman syndrome), a malady affecting fewer than 200 people worldwide. The disease is curable, but Donovan’s only chance for survival is a bone marrow transplant and, so far, no matches have been found in the Bone Marrow Donor Program registry.

Donovan’s family and friends are teaming with Dana-Farber Cancer Institute to hold bone marrow drives. There will be a drive at Lasell College (De Witt Hall), 80 Maple St., Newton, on Sunday, Sept. 28, noon-4 p.m.

The screening process is painless and takes only a couple of minutes. Human Leukcyte Antigen tissue type is what the donor program registry uses to match patients to donor. The donor’s HLA is identified by testing a sample from the inside of a cheek with a swab to come up with HLA type. Testing is done for potential donors between 18- and 60 years old. Potential donors who are not available on drive dates can still be screened. A mail-in test kit can be provided by the Dana-Farber Cancer Institute. Call Dana Farber at 866-875-3324, or e-mail nmdpdonor@partners.org.

Donors need to be willing to donate to any patient in need and meet the health guidelines. Donors with diverse racial or ethnic backgrounds are especially needed. To learn more about the National Marrow Donor Program, visit www.marrow.org.

Rosie Ruiz Redux

Today was the Dana Farber Marathon Walk. Team Haggis raised an insane amount of money by walking an insane number of miles...except for me. I (along with Bambina in a jogging stroller) joined the party with 3 miles left to go.

So: Congratulations, rock stars! Thanks for letting me bask in your glow. And thanks to everyone who donated to the cause. I promise you your money will be well-spent. Like the picture says: I'm Living Proof.

I Need a Style Bailout

I’ll spare you a post about the impending collapse of the American financial system (how does Four More Years sound to you now?), and instead talk about my ongoing efforts to stop being a fashion victim. Maybe I’m just trying to comfort myself as I watch my retirement savings be vaporized; who knows? But in any case, my ongoing appearance upgrade after 18 months of wearing sweats and being sick (albeit taking into account the new financial realities) has been revitalized. Why the sudden effort? Because this morning Bambina told me, as I dressed to take her to preschool and then go walk around the indoor track, “Mama, don’t wear that! You look like Sandra T.” * [name changed]

You don’t know Sandra T, Bambina’s unpleasant summer preschool teacher. But just know this: if someone tells you that you are dressing like her, you need to open your closet and throw in a match. Now. It was so bad that she asked, while in kiddie laughter hysterics, if she could have the pants and shirt to play Sandra T dress-up. Now, ordinarily I don’t allow my preschooler to offer her opinions on what I wear, but Bambina has steered me right in the past on matters sartorial. One evening, I was wearing the BBDD’s famous flannel shirt (now ripped and sad-looking) from college to bed and she said, “Mama, please don’t wear that; it not a good style for you.” I was momentarily caught off-guard and realized that I looked ridiculous, like a Kurt Cobain reject at the age of 36. She also insisted that I wear the qipao yesterday to dim sum. I felt a little weird at first being all gussied up, but she LOVED it, loved the attention we got from the Chinese ladies, and loved telling people that she picked it for me. In the end, I realized that we looked damn good together. So I think my 4 year-old knows from fashion. And on second look, the Sandra T look was indeed rather unfortunate, if functional. So I cut her some slack on the unsolicited Tim Gunn action for one day.

So, with our Dana Farber marathon walk coming up next week, we’re now off to buy me a sports bra, a non-Sandra workout shirt and pants, and some decent sneakers so I don’t channel her mean and dumpy teacher for five miles. She has also inspired me to re-read my Tim Gunn book about clothes not being designed for the purpose of humiliating you every time you look at them. So I’m pulling out all the things that don’t fit me anymore (the transplant and the prednisone have “shifted” my weight floorward, alas) and giving them to the good people at the Vietnam Veterans of America. It’s time to purge the closet of anything stem cell-related (except for my famous turquoise hoodie; that is staying with me forever because it reminds me of coming home to Bambina after not seeing her for 3 weeks), of anything pre-2005, of anything that “might fit” someday when I’m off the meds. Screw that. When I’m off the meds (whenever the hell that might be), I’ll buy some new clothes then. In the meantime those clothes just serve to taunt rather than inspire me. So out they go. And with them, I hope, any shadow of Sandra T!

My Combover

You know the "combover." That deplorable practice of balding men wherein remaining hair is grown long and then combed over a bald patch, fooling no one but the comber. I now feel that I understand these men to a degree most women do not.

You'll recall that I lost a bit of hair last year post-chemo. Albeit in random places and certainly not in any way rendering me bald. But hair was sacrificed regardless. Now, I'm not of the generation who thinks that a woman's hair is inherently intertwined with her femininity or "womanhood." I've seen too many completely gorgeous women with extremely short--or no--hair to believe that you have to have Farrah Fawcett's mane to get a man; or that you must have a certain type of hair in order to be a feminine woman. It's for that reason that I never got too wigged out (pardon the pun) by my hair loss. I wasn't too psyched that it looked weird, in the sense that it was random and bizarrely-patterned, but that was more my neatnik issues than my coiffure issues. I never once looked in the mirror and thought, "Oh my god, you look so ugly because your hair is falling out." I just thought, "Why can't it fall out totally or at least in some semblance of order, for heaven's sake?!"

All the same, as the hair grew back in I decided that I would grow my hair long. Partly because I have to sunscreen my entire body every time I leave the house and short hair just creates more neck/ear real estate to worry about. And partly because I didn't want to do the expected "cut your hair short when it's falling out" thing. I had long-ish hair before the transplant and I wanted to just get back to normal after the transplant.

Well, I realized a few weeks ago that my desire to grow my hair long was actually a desire to hang on to the hair I have, rather than to actually have long hair. This is the very definition of a Combover Man. A person losing hair, and who therefore can't bring himself to cut the hair he still has. How did I come to this conclusion? Because I wear my long hair in a pony tail every damn day, my friends. And because--fashion alert--I don't look that great with really long hair (just as no man looks good with a sheet of hair wrapped around his head). Or, rather, I look good with long hair if I spend some time blowing out, curling, gelling it. But on a daily basis in this house, you know that is just not going to happen. And so what you get is me in a ponytail. Every day. The additional issue is that I do have to wear a hat when I go outside to shield my face from the sun. My current hair situation then requires a ponytail so that I don't end up with constant hat head.

So today I'm getting my combover cut off.

I'm not going too short. The days of me being 102 pounds and carrying off that Natalie Portman-in-V-For-Vendetta look are waaay gone. But I'm going chin length and funky. I definitely don't want a classic "I used to be sick" haircut, and I definitely do NOT want a "mom" haircut, which leads inevitably to wearing "mom" jeans and seasonal sweaters. Those are the two things I think I have been fearing and which had been keeping me committed to having long hair. I have told the BBDD to seriously smack me out of my mental state if I ever come home looking like this:


But with any luck--and a little vigilance--that shouldn't be necessary. In any case, I'll post some before and afters later today. And maybe I'll throw on a reindeer sweater with light-up santa earrings just for kicks.

Get Thee Behind Me, Tetanus

Today was Vaccinations #2 Day: Hib, Diphtheria, Pertussis, Tetanus and pneumoccocus somethingorother. These ones hurt waay more than the last ones, if you can't tell from my perplexed expression:


I'm now off to conquer AM radio. That's right folks. In my quest to become the Empress of Cause-Based Media, I'm doing an interview for the upcoming Jimmy Fund telethon on WEEI. I thought, "Cool, it's for radio." Turns out it's also being taped for the big screen at Fenway Park. Okaaay. Had I known that looks would count, I would have made my blue rinse and blow-out appointment long before now. So it will be what it will be: my funky hair, moon face and me. My donor will also be there, so it will be great to see her again without the pressure of a public luncheon breathing down our necks.

Speaking of breathing down my neck (or not), my next Dana Farber appointment isn't for 3 months! How insane is that?! I sat there today, eating my corn muffin from Dunkin Donuts and drinking my decaf tea, watching a woman in a bandanna eating a pop tart gingerly while lifting her mask. It really smacked me in the face that I was that woman not so long ago. It made me feel for her, knowing how much suckage that is. But it also made me want to get out of there; to escape the constant reminders of how sick I was and felt. How nice is that?

I'm definitely still in the post-transplant process, will still be immune-suppressed for probably another year, won't ever really be able to say "no worries!" even if just for psychological reasons. But I really just want to get beyond being the Sick Girl and get back to being Just E. I remember a few years after Gilda Radner's death Gene Wilder (her husband) finally announced that he was "cancered out" and didn't want to do all these interviews about Gilda anymore. That's kind of how I feel at this point. Not about the interviews, because that's actually where I see me being able to do some life-affirming, positive work that removes me from the large pool of Sick People. But just in having my life more or less revolve around my health; I'm kind of over it. I'm "aplasticked out." So much of the past few years has been devoted to my diagnosis, then my failing health, then my oh-my-god-I'm-f*cked health, then my transplant, then my recovery, then my GVH; and I'm just kind of done giving anymore time to a disease I no longer have. I want to move beyond. Which is not to say that my GVH isn't still bugging me, and that I don't have daily stuff to deal with on the health front (Who doesn't?! I'm special?). But just that it's something I want to incorporate into my life and live around, rather than having it be the sole focus.

I guess what I'm saying is this: it's absolutely a miracle that I'm alive, and the best way I can think of to show gratitude for that fact is to really, truly live. Not under the cloud of disease, not under fear that the bottom is going to fall out, not with a constant eye to the challenges of the past.

Or, put another way, the best way I can thank my donor for her gift is to use that gift wisely.