Paint it Black

Let's play a game on your Friday morning! It's called, "Spot The Classic Anxiety Dream." I'll be your host as we navigate the underlying meaning, so let's get started!

I'm hanging out in a bar/restaurant with all of my girlfriends. Suddenly a man (who looks like a combination of all of my doctors over the past year) walks up with a woman holding a TV camera. They turn on the camera, flip on the bright lights and start telling me breathlessly "You've Won! You've Won!" [Doctors offering something to help me]

I of course bear that "Me? What did I win?!" look that all TV contest "winners" or surprise guests on Maury Povich seem to have; the look that is somewhere between abject fear and fruitless hope that 'win' in this case is not a misnomer. Then the Doctor Morph tells me "You've Won! You are going to LA to have sex with Mick Jagger!" [Rare and dubious physical undertaking]

Whaaaaaaaa??????????!!!!!!!!!!!!!!

All of my friends are clapping, the entire bar is on its feet cheering, and it's clear that I'm supposed to be brought to my knees (ahem!) by this amazing stroke of good luck. Doctor Morph hustles me away into a van as I still hear the cheering ringing in my ears. I then get to an office where another woman is sitting. She looks exactly like a groupie for Ratt, circa 1986 or Poison, circa 1988. [Someone else belongs in this scenario; not me]
She has also won. I think, "Geez, Mick, you can't even settle on ONE 'winner'?" The rest of the dream involves me being interviewed to determine what I want to see happen with Mick; how do I feel that this "experience" should go in order to get the most out of the time I'm spending with Mick. I spend the rest of the dream asking questions like, "Um. I have a family at home; I'm not sure this is a good idea" or "Honestly, I really can't say what specifically should occur. I'd really rather just wish my fellow winner here well and say goodnight." Doctor Morph tells me that "oh no, you really can't back out now. Mick is counting on you." [Unable to get off the speeding train of dubious and rare physical events]

I tell him to tell Mick that I have tremendous respect for his work (barring of course that Dancing in the Streets duet with Bowie), but that I really do have to get back to my life. Doctor Morph tells me "This will change your life for the better." I look at my clearly-been-around-the-block/arena-bathrooms compatriot from the era of Dokken, accept my fate, and say, "Okay. But as long as I can go before HER."

I wake up. Immediately wonder why I was dreaming of Mick Jagger, whom I find to be repulsive. Feel grateful I was spared a visual of whatever I was gonna have to do in the name of "White Sugar." Wonder if Mick knows he represents chemotherapy, mouth sores and vomit. Decide to bar Mick from my brain and instead eagerly look forward to dreaming about winning the "Ewan McGregor" contest post-transplant.

No Shirt No Shoes No Stem Cells

One of the most egregious aspects of a stem cell transplant is the risk of Graft Versus Host Disease: GVHD. It occurs when the T-cells in the donated marrow/stem cells don't realize that they are in a new body, so they set about attacking your entire system as a foreign invader. It is the horrifying and painful result of the bone marrow rejecting YOU, rather than the opposite which is the case with organ transplants. It is a huge risk of transplants, and in many cases these days with all of the medical progress, it is sometimes damn near the only major risk of a transplant. There is a 50% chance of getting it, nothing predicts who will be spared, and it can be either acute or chronic. Neither is fun, but chronic can be horrifying, often creating a new reality in which you have simply traded one disease for another, more debilitating one. It's a cruel irony to suddenly have functioning bone marrow but to have it lobbing IEDs at you nonstop. GVHD can bring about liver failure, kidney failure, scleroderma, constant insanity-inducing itching, inability to keep eyes moist, the list goes on and on. Needless to say, GVHD is the thing I pray most about these days. I have almost no fear of the transplant itself (stupidly?), but I massively fear the GVHD. It continues to be the most challenging aspect of any successful transplant, with researchers around the world trying to eradicate or minimize it, with limited success. One thing they do know that can cause it to occur, even years later, is sun exposure.

Which brings me to the second most egregious aspect of the transplant: the lack of appropriate yet cool/sassy clothing. I anticipate 100+ days of shut in-ness, save for hospital outpatient visits, with the notion that I'll be in sweatpants and "comfortable clothing," for obvious reasons. I'll have a Hickman catheter, so my clothing options will be limited. (A Hickman is a central line into the jugular vein that is inserted at the shoulder and exits out between the nipple and the sternum. It allows them to give you meds and take blood without having to put a needle in your nonexistent veins a thousand times. It sounds gross because it is. More on that later...)

During that time, and pretty much for the rest of my life thereafter I will not be able to be in the sun without massive sunscreen, long sleeves and every inch of my body, including feet and fingers, protected from the sun either by clothing or copious sunscreen. It sounds effing miserable, and then I think about my skin hardening and my liver failing from sunlight-induced GVHD, and I realize that going for an autumn hike in the forest can be just as much fun as lying on a beach in summer, so I'll get over it for the sake of having a life.

All of which means my fashion desires are being frustrated at every turn. Because I'll have the Hickman (and because I'll not be in top form physically) and will need to stay sun-safe, I'll need long sleeve button-down shirts and t-shirts so they can access the Hickman ports, as well as cute shoes that can't be flip flops to cover my feet. Bah. So I'm on the lookout for funny and cute shoes and shirts that will make me feel cheery when I'm bummed that I can't put on my sun dress and go to a cookout; I'll just put on my electric yellow shoes, crazy t-shirt and laugh myself silly.

I already scored me the shoes from landsend.com:


So, what tees should I get?

Baseball Has Been Very Very Good to Me

We’re back from our “listening tour” of transplant institutions.
DFCI it is.

By the time we left the hospital it was all but decided that this would be the place. I felt understood, safe and for the first time in a while, really and truly hopeful. Not only had the transplant doctor actually heard of my disease, he had treated two patients with my exact disease and they had just passed their one year anniversaries. How do you ask for more than that? It was a welcome relief from telling doctors with twenty years under their belt, “See, it’s a disease called…, discovered in…caused by…” Here was a doctor finally telling me something I didn’t know. Yippee!

But as with most blind dates, the first five minutes of our meeting would not have presaged that outcome.

The doctor was not at all what I was looking for. What, in retrospect was him checking me out as a potential patient, came across at the time as standoffishness. He seemed to be questioning my presence there, my diagnosis, everything. Because some of my medical records hadn't arrived there yet (I shake my fist at you, Hopkins!), he asked me if I was sure that I had such a rare disease because, as I may know, diagnosis is not a simple undertaking. I said, "Yes of course", but was really thinking, "Are you effing kidding me with this?!!" Yeah. I just like to drive around with a mask on to random health care institutions, randomly claiming to have a rare disease so that they'll give me chemo for fun. Having an ordinary disease is so not my style, so I figured I'd come up with something arcane and challenging just to keep it interesting for us both.

I immediately decided I didn't like him very much. Which meant that I couldn’t possibly work with him on the (flawed?) theory that a guy you can't stand to be in a room with can’t possibly be entrusted with your life. He was very officious, quite cold, and obviously dealing with some serious lack of social skills, in my most humble socially-skilled opinion.

And then came the Red Sox. It came up in stilted, awkward, fill-the-silence, small-talky discussion that, being so close to Fenway, there would be opportunities for baseball games. He immediately came alive, talking about how he and his wife were trying to get tickets, being a fan, the whole Red Sox Nation discussion. He became a person; a rather warm and engaging person at that, finally connecting with me as a non-stranger. I considered it a sign from G-d himself. Or at least from David Ortiz.

Of late I have been becoming more attuned to things I consider signs. Perhaps it’s the natural human reaction to a lack of control over major aspects of your life. Your brain becomes primed to find meaning in randomness, to assign significance to seemingly unconnected or insignificant things, perhaps as a way to reassure yourself that the universe does follow some kind of order, that whatever is being hurled at you is part of some grand plan that you will someday look back on with wonder and humor and “I knew it would turn out fine as soon as I saw that '69 Chevy on Arbor Day 1986…blah blah blah.”

Whatever the reason for doing so, I like going with my gut, with my signs, with my instincts. Especially when the quantitative side of the equation is equal no matter what, as it is in my case. This way I will never look back and say I made the wrong decision, because having studied all the facts, sometimes the only way to finally move forward is to go with your intuition. Even if it's about baseball.

God’s Grand Plans

This post will be about a visit to the hospital. Specifically, the unending number of hospital staff who make sure to tell me that "God has a plan for you."

Hello?! What the f*ck does that mean exactly? Do you hear what you are telling me? Really?

Seriously. God's plan is that f*ckwits the world over are to be healthy, happy and thriving but I (an albeit snarky but trying-to-be a good person) am to be facing a life-threatening disease with the potential of not seeing my daughter grow up? If that is the case, please tell me who I speak to in God's Planning Department, so I can register my total dissatisfaction with His work to date.

I don't want to diminish anyone's else's belief in such a Plan. But, much like when someone close to you dies and you come over time to see that perhaps it is better that they are not suffering, etc, it is really a conclusion that you--the bereaved--have to reach on your own. Someone telling you a day after your kid dies that he's in "a better place now" is barbarically presumptuous if not outright cruel. It's a conclusion that only the affected person can arrive at, if that's where they need to get to. To have someone else tell you such a thing, based on their own belief system, is simply not appropriate or necessary.

Same with diseases, chronic, life-threatening or otherwise. YOU don't tell me that this is God's Plan for me. Who the hell are YOU? Have you chatted with Him recently? Did He tell you something he's been avoiding telling me? And are you seriously telling me that God decided that I should be sick and you should be healthy? Are you TRYING to sound like an a**hole?

I recognize that in many religious traditions, specifically the varied Christian ones practiced by many of the staff at the hospital, there is a belief that "God doesn't give you more than you can handle" and that "He has a plan; this is all part of His plan and we don't get to know why this happens." I recognize that for those who believe that, the notion brings tremendous comfort; a comfort they are attempting to offer me. But here's the problem: I don't believe that at all. And even if I did, it would not be for Mrs. Phlebotomist to tell me what she thinks is God's Plan for me, would it?

From where I sit, if there is to be meaning found in any of life's dramas, heartaches, hurts and tragedies, it is to be found in what we do in the aftermath. There is no reason I have this disease; there is no meaning in the situation in and of itself. It's just life, and this is my and my family's thing to deal with, just as others have different, better or far worse things to deal with in their own lives. There is no Plan that gave me a disease. And if you tell me there is, we are gonna fight. The only meaning to be found is in how I/we handle it, what we learn from it, how we live better or differently or more exuberantly or more compassionately because of it. But there are any number of ways to teach someone that, short of a life-threatening disease, and I choose to believe that the God I believe in doesn't torture humans for the sake of some Global Strategic Plan outlined in a celestial powerpoint slideshow. Which is ironic, considering that we Jews are supposed to believe in the "Old Testament vengeful God" and the ladies at the hospital believe in the "New Testament forgiving God." So why is it that their view of God seems so much more vengeful than mine? In my head, He is guilty of--at most--benign neglect. Setting all these wheels in motion and then letting it all happen according to chance and luck and the laws of nature...and then seeing what we do with it. If I believe that He is actually at the helm, skippering this whole Good Ship Bedlam, then I have to believe that he's either terribly cruel or incompetent or both.

Which is not to denigrate anyone else's religious convictions. I'm not attempting to have a theological discussion or to weigh one religion against another. I'm just saying that in the United States in 2007 it's good to be mindful that the "witnessing" you think you're doing, the comfort you think you're giving, based on your religious beliefs, can actually do more harm than good. I used to like chatting with the ladies at the hospital, but as I've clearly gotten sicker their efforts to tell me to "give it up to God" have gotten more frequent, and I now just say "thanks" and count the minutes till my blood is taken and I can mercifully leave. I have my own religion, I have my own sense of what This All Means, and I appreciate the attempted kindness but despise the assumptions behind it.

My only consolation is knowing that it was part of God's Plan for you that you be stuck reading my rant today on a blog. But don't worry, I hear his Planning Department is open for complaints. :)