Message from Honoree

Hi,

I have to warn you, this update is more introspective (I blame it on the drugs. In fact, I blame everything on the drugs. And I don't even have to go as far as Burning Man). Thanks to those of you who've been in touch and/or come by. I really look forward to seeing you in the "outside" world as well.

Today marks 2 weeks + 1 day in the hospital on "hell round" (round #2). Despite some awful days, I have tolerated this round fairly well. The bad news is that the blood clots we discovered on my second day were more serious than I ever thought. The good news is that they should dissolve soon enough and they were caught early. Also, I haven't needed to use my personal morphine drip as often as the doctors thought I'd need it (although it does make me feel like a badass to have full access to a fairly large amount of morphine). I can only press the button every 6 mins, so I guess there is some limit. The morphine is for all the mouth-related side effects. And yes, those are as bad as you've heard, but popsicles + morphine work like a charm (thanks Lindsay for the popsicles). I have 4 more rounds to go, but the hardest will be the repeat of this one, which again will involve 3-4 weeks in the hospital.

Non sequitur: I actually look "not bad" with a platinum blonde wig. One of the doctors who ordinarily never talks to me started talking to me when I was wearing that wig, so I guess blondes have more...conversation opportunities? Also, couture pillows do add a little something extra to the comfort level (thanks Heidi and Dana). I fit into a pair of pants I haven't been able to wear since 2001. Why I held on to them if I couldn't fit into them for 6 years, though, is a mystery.

I had an unexpectedly severe (and rather frightening) reaction to a transfusion of platelets last Friday, so now every time I receive platelets (like today) I get "sufficiently premedicated," which means "super sedated" to me. I have no recollection of the hours noon to 4:30. Of course, now, long past midnight, I'm completely wired. I did the only thing you can do when you're wired in the hospital: I ate a pint of Haagen Dazs. Sugar rush + being totally wired= writing long emails and watching the Godfather trilogy. (Maybe I should be eating cannolis instead. ha ha). I eat almost a pint of Haagen Dazs every day (thanks, David & Lori and Jack & Cristina). That's what's got me up to a stable 98 pounds. Even though it's low-fat Haagen Dazs, it serves up 125 grams of carbohydrates (yes, mostly sugar). Quite rich in protein, though: 36 grams per pint.

This cancer thing really does a number on the psyche. It's incredible. I have photos of myself "BC," (before cancer), and I find myself referring to the image of me in the photos as "her" or "she." As in, "I wonder when my hair will grow back as long as 'hers.'" Or, "I wonder if I'll be able run like 'her' again." When I walk out of this hospital for the last time, I'm going to be pretty different from "her," I think. I'm a little nervous about getting to know the new Suhani, but hopefully you'll all like her (or at least tolerate her) just the same. Who knows, maybe the new Suhani could grow up to do some pretty incredible things?! Like eat an entire Zachary's pizza in one sitting. :-)

Today, a 69-year old woman who's battling lymphoma for the third time and received a bone marrow transplant just this past Friday said to me, "this is incredibly difficult, but it must be so much harder for you, being so young." That someone who's in such a terrible state herself could find empathy for me, drove me to tears. A nurse just gave me a lovely gift b/c I was sad yesterday, and I can't believe it!

Many of you have asked about my odds. I explicitly asked about them myself. But, frankly, if it's not 100% cure (which it's not) then it doesn't even seem to matter. Cancer-free survival for five years = "cured." If the leukemic cells surface within the next five years, then I'm not cured. It's the toughest thing to accept. I never thought I would be so excited about my 37th b'day, but if I make it to 2013 without a relapse, I can breathe a great(er) sigh of relief.

An amazing "consulting" doctor (he has spent about 50 years working with children with cancer and started Stanford's pediatric oncology dept. in the 1960s) said something to me I think about every day: "I don't want to just see you alive after all this, I want to see you really live." I guess in the end, what it comes down to, is I'd like to see that too.

Finally (whew!), I am going to be an honorary for Team in Training (Leukemia & Lymphoma Society). The campaign managers I've met through it are incredible, and I hope the next time you have a chance to sponsor someone with that organization, you will.

Best regards,
S.