Stifler’s Mother

I love being back out among The People. Even if it's only at the doctor's office. First I went to phlebotomy where I finally had a lady who got my vein first time. At this point my veins have been so overused that they are actually more scar tissue than vein, so while finding one is easy, getting a needle through its exoskeleton is well-nigh impossible. So "Betty" gets my vein first time. On the last of 16 vials it starts to dry up and we've got to make it work. So she jimmies the needle or something, and not only does the blood mercifully spurt into the vial and fill it up, it also explodes all over the table, over her clothes, and all over her entire work area. She and the other phlebotomist standing nearby looked at me with great concern, and for whatever reason I just completely burst out laughing hysterically. It was a total bloodbath, and I could not have found it funnier. Especially since not a single drop landed on my clothes. You go ahead and figure out that blood spatter analysis, because I have no idea how it missed me but hit everything else in its path.

Next up, after seeing my doctor, was my periodic post-transplant pulmonary function test (to make sure the chemo and various drugs have not messed with my lung function). The tech doing the test (whom we'll call Stifler) turned what is a 15 minute process into 45 because he not only wanted to review my results with me after each leg of the test, but he also wanted to just shoot the breeze about anything and everything. Now, bear in mind that this test involves me having my mouth on a hose about the width of a mack truck tail pipe. Not a whole lot of conversation goin' on from my end. But Stiffler wants to know how my transplant went, did I find religion, what meds am I on, etc. He was perfectly personable in a totally dorky and awkward way, but I was thinking the whole time, "hello!?! If I answer your question, I'll have to interrupt the test!" And it was already 4:30 in the afternoon after a night when I'd had 2 hours of sleep, so I just really wanted to get home. But on he went to beat the band.

So what did I find out? Well, you will be interested to know that Stifler has a colostomy bag, is Jewish, grew up in a relatively happy home except for his mom who drank, and totally loves quality pizza. This from 45 minutes of me breathing in, holding my breath, breathing out, breathing in, holding my breath, blowing air out fast, blowing air out slow and steady. If only I could have extended the test to a full hour I might have gotten his ATM pin number. Damn!

I guess I should feel his pain. He spends 8-10 hours a day exhorting various people to "breathe out! hold it! keep going! just another few seconds! Aaaaaaaand....stop." He must really long for some actual conversation with actual humans (believe me, I know how he feels). And, by the nature of the beast (ie, aforementioned mack truck tail pipe), if the conversation is going to happen he's going to have to do the talking, which I completely respect. All I'm sayin' is that it's a pretty big leap from "So, what meds are you on?" to "yeah, I have a colostomy bag and it's a challenge." Especially because I was being careful to say stuff like, "Well, I have GVH, so I've got some 'gut involvement'," rather than saying, "I have periodic bouts of raging diarrhea" to a total stranger. I'm giving Stifler a break, however, simply because he kind of made my day with his wildly inappropriate Stiflerness. It's been waaay too long since I've had such a truly bizarre experience, and I'm deeming it my Official Welcome Back into the insanity of life among humans.

Oh and By The Way

I met my stem cell donor.

DF held a donor appreciation luncheon and they asked me to speak about my transplant and to meet my donor. At first I said "no thanks" because the prospect of meeting my donor in front of an audience was just a bit too "Montel Williams" for my liking. But when they said that I could meet her beforehand, I said okay. Mostly on the theory that Bambina would be in the audience and I was not going to have her see Mama lose her shit on stage at the age of four. And also because, notwithstanding my blogging proclivities, I still kind of keep my cards close to my vest in matters like this.

It happened a couple of weeks ago, but I haven't written about it because I haven't really felt like talking about it. And even though I met her at a well-attended luncheon event I was still feeling a bit private about it all. After all, what do you say to or about someone who saved your life? And, to be honest, although I've thought of her fondly over the past year, it has been in the abstract. Not to mention that I've had so many other things on my plate that ruminating on the identity or personality of my donor was not really high on my list of things to do, as ungrateful as that may sound. So I didn't have any image of her as a person or any preconceived notions about her going into this. In fact, leading up to the luncheon, I was a bit nervous that she'd be a fruitcake or a religious freak or just anyone that I'd be cringing to have in my life for the rest of my life. Call it a Jerry Springer Meet-Your-Birthmother show or something, but I was just hoping it wasn't going to be all "we don't have anything in common except our stem cells" awkward.

So anyway, I'm writing about it because it's about to be up on the DF website and then we're going to be on NESN later in the summer as part of a donor recruitment drive with the local sports teams. So I figured if you're going to see me online and on TV, it's probably time to get over my perceived privacy issues. And anything that gets people to sign up for the registry is worth a little bit of me stepping out of my comfort zone.

I won't say too much about my donor since it's not for me to publicize her on a blog. But I will say that she's pretty remarkable. I'm the second person she's donated to. And she only signed up as part of a drive to see if she might have been a match for a family friend. So it's pretty illustrative of someone's honor that they sign up with the intent of helping someone they know, and then agree to follow through--not once but twice--in the aid of a complete stranger. And she's only 30 years old. How many of us can say we saved someone's life by the age of 30? And more to the point, how many of us can say we saved someone's entire world?

To that end, here is what I said at the luncheon:

16 months ago I was feeling like the unluckiest person on the planet. As a result of toal bone marrow failure I was so sick that I had a daughter I couldn't parent, a husband I couldn't do anything with or for, a business with friend we had to close because I was too sick to leave the house. I spent the the greater part of my days in and out of hospitals for transfusions, since I was producing no blood cells of my own. And the times I wasn't there for a scheduled visit, I was in the ER because I had no immune system and was spiking fevers and infections on a weekly basis, all of which could easily have killed me.

Looking back, our whole existence was focused on my failing health, on managing my almost-daily emergencies. At the time, said to husband "this is a miserable way to live." More accurately it was a miserable way to wait to die. Even the trip to Dana Farber for our consult was a massive undertaking. I was too sick to get on a plane, so we drove ten hours nonstop from DC with a map of all ERs en route just in case I spiked a fever on the way. It was just constant stress and fear with seemingly no end in sight.

One night in particular, I was in the hospital with a 104 fever, it was 3am, and we were having all those conversations with doctors that you really do not want to be having: "advanced directives" "anyone you need to call?" "not sure how tonight is going to go..." I remember that night because all through my illness I had always prayed for a cure. I'd always said, "God, there has to be a path for me, just show me the path and I'll do anything I need to do to walk it. I'll drag myself by my fingernails, just show me the path." That night I realized that I'd given up praying for a cure. I was just praying to live through the night because I'd put my daughter to bed before my fever spiked, and I was coming unhinged at the thought that she would ever think I'd just left her in the middle of the night. I think whatever age you are when something like this happens or whatever your background, you can probably imagine that praying you live for a couple of hours so you can see your child's face is just about as dark as you ever need your life to ever get. And we were there. We were looking into the abyss.

Fast forward to today. A happy day. 12 months after my transplant, 12 months made possible by this wonderful woman. 12 months in which I've learned that I am not now nor have I ever been the unluckiest anybody anywhere, and in fact quite the opposite.

Because that path I prayed for led me to DF; that path IS DF.
And how lucky am I that here at DF I hooked up with the amazing Doctor, who not only had heard of my sad little rare disease but had treated people with it.
And how lucky that I had the nursing care at DF and the Brigham. Nurses who gave me the highest level of technical care while ensuring my dignity as a person, which is no small feat if you are familiar with the numerous indignities of a transplant.
And of course, today: how lucky am I that I was put on the earth at the same time as this woman, who with no thought of any return for herself, no sense that anything would come her way as a result, and on what in my case was a moment's notice, gave of herself to a complete stranger. And if that doesn't make you feel like the luckiest person on the earth, I simply don't know what will.


Which brings me to my second point. In Judaism we have a belief that "He who saves a single life, it is as if he has saved the entire world." When you think about all the people who love the person you saved, who rely on the person you saved, whose lives would be so fundamentally different without the person you saved, you really start to grasp the significance of what you have given as a stem cell donor. And that's what I hope you will all take with you today and carry with you for the rest of your lives: That you saved someone's life for sure. But more importantly you saved their world. And you need look no further than that table to see a small example of my saved world: Four generations of it. (I then talked about the people at the table).

And, so, {donor} I'm just gonna say it: I've just met you and I love you! It's our Oprah moment! I have thought about you every single day since my transplant and have considered you a member of our family since then. {donor}, I love you because you saved my life. But more importantly and far more significantly, I love you because in saving me, you saved my entire world.

Because now I will get to grow old with this very cute man right here. And, most importantly, I will get to see my daughter grow up. Because those 16 months ago, I was trying to come to terms with the fact that I was going to miss so much of her life. And it was easily the blackest, darkest, most miserable and heartbreaking experience of my entire life, and a place I never want to return. But now I will get to be her mom just like I was always meant to be. And that is a debt I can never never repay you. And all I can say, however meager-sounding but no less deeply-felt, is thank you. Thank you for saving my world.

And, for the record, my donor and I got along like a house on fire. :)

Rockin’ the DF

I'm spending the morning here at the clinic getting my final rituxan infusion. You'll recall I joined the study investigating whether rituxan prevents chronic GVHD. So far so good, in my case (since I have late acute and really don't want to be getting the chronic kind to boot). Today's group is a good one. Sometimes you come here and no one chats, which is no fun. Then again, sometimes you come here and everyone wants to chat which can also be no fun. But today I'm in the mood, so I'm enjoying the group. My faves are two Irish brothers, twins I think. They both look like Drew Carey, and they are just making my morning with their effusive jolliness. I dropped my cell phone and didn't notice only to have Drew Two pick it up and give it to me while saying, "Ye'll be wantin' yer phone. That's a lovely phone, 'tis." He may look like Drew Carey, but I'm a bit smitten regardless due to the accent.

I'm actually looking forward to getting a bit of sleep while here. I was telling the BBDD about those days when you have to travel for work or pull an all-nighter and you breathlessly tell someone "I've been awake for 20 hours!" I realized yesterday that I'm awake 20 hours every day; that's my life right now. Especially since Bambina has recently decided that 4am-ish is the time when she a) has to pee and b) feels terribly hungry. Kill me now. So I'm making her a chart to put near her bed with a List of Things To Do If You Can't Sleep:

1. Picture of a toilet--Go Pee
2. Picture of cereal box--Eat Cereal (from a tupperware I'm about to put near her bed)
3. Picture of a book--Read a Story
4. Picture of musical note--Sing to Yourself
5. Picture of markers--Draw some Pictures

She's good about doing all of these things but can't quite remember what to do first in the moment. So I end up walking her through it every time this happens. Hence the chart going up tonight. Today it just became apparent around 5am that she was not going back to sleep, so we went downstairs and did Play-Doh and drawing. But I'm beat, because there's a (small, yet large) difference between being awake at 4am and being awake while managing your kid at 4am. One is bearable-ish. One is unpleasant, no matter how much you love your sweet Bambina.

Bring on that Benadryl, baby!

Fashion Faux Pas

So here's my boyfriend Barack out biking last weekend with his wife and daughters:


I was about to write a little tough love piece on not tucking that shirt into those jeans with those big white sneakers. I was about to say that all claims to the contrary, he can't possibly have "a Jewish problem" seeing as his weekend attire makes him look exactly like Jerry Seinfeld circa 1994. But then I read in the NY Daily News that Tim Gunn said: "I am grateful that he is not wearing sweats. I am grateful that he is wearing athletic shoes and not Crocs, and I am grateful he is wearing a collar," Gunn told the Daily News. "For a weekend out with the kids, I think he looks great. I give him a B-plus."

You KNOW I'm not going to disagree with Tim Gunn on anything. So all I will say is, "perhaps boot cut jeans next time?" and leave it at that.

In further fashion faux pas: Me. As you know I have to avoid the sun assiduously. Especially while I'm on this latest immunosuppressive that not only causes diarrhea but also skin cancer. Yeah, you read that right. Not "may lead to conditions that might perhaps some day lead to the precursors to what might be skin cancer." No. "This drug causes skin cancer in susceptible individuals." Like, take this drug, recover from your transplant. And while recovering, look forward to all that skin cancer you're getting! Sweet. So I've been walking around looking like a beekeeper in my 60's. (Not that there's anything wrong with being in your 60's. There's just something wrong with LOOKING like it when you're in your 30's). No longer, darlings. Bambina and I went to Target to buy a pump to blow up her kiddie pool. While there we both saw the same hat at the exact same moment and it was in the cart in no seconds flat. I would describe it as a "cowboy" hat, but that doesn't suffice. I'd describe it as "so last year" but that (although true) also doesn't suffice. I'd describe it as "something a 4 year-old would pick" but that would belie the fact that Bambina was given the "Stylin' BandAid Queen" award at her preschool end-of-year party due to her dual penchants for outre/iconoclastic/in the vanguard clothing getups and her desperate need to put a bandaid on anything that looks remotely like a cut or blemish (such as a red pen mark or a freckle). Those of you who know her and saw her school picture know what I'm saying: white peasant sundress, pink/green/blue polka dot long sleeve shirt with flower on front, purple tights, black and silver sparkly shoes, 5 braids in her hair in no particular order--and three bandaids visible in the photo.

No, darlings. The only way I can substantively evoke this hat for you is to say the following 5 words:

Bret Michaels Rock of Love.

Oh yeah, baby! Behold, my hat:

Sans bandanna underneath, however. I'm done with bandannas. They all just say "chemo" to me now so I can't wear them without gagging a little bit. But how about that cheeseball hat?! And worse: it's workin' for me. I don't know how it's working for anyone who's looking at me, but it's working for ME. And, seriously, that's all I care about. Because I'd rather look like a washed-up hair band rocker than an antediluvian albino sesquicentenarian with a raging Vitamin D deficiency.

Or something like that.