Monthly Archives: February 2013

The Marrow Road

[I just got around to asking Sojourners’ blog editor if I can reprint here blogs I post there… here’s something I wrote last December. In the meantime, I found out that my bone marrow donor *will* have to have the donation taken out of her hipbone–turns out that’s how they roll with haplo transplants at Hopkins, at least in my case. So I was wrong there.]

I’ve been thinking, as Advent goes on, what it meant for God to lay aside infinity and put on a body that was not just tiny, inarticulate, and helpless, but also already marked, to the marrow of its little bones, with the seeds of death.

He must have felt in his own flesh this dramatic comedown — from omnipotence and omnipresence to a being that had about threescore and 10, max, even if it hadn’t going to be cut off halfway by self-sacrifice and Roman capital punishment. And that must have given Jesus infinite tenderness and patience towards the waves and waves of people who, during his short ministry, were always coming up to him and asking, directly or just by their presence, for him to heal their bodies. In Luke, the Gospel focus of the new liturgical year, there are more than 20 healings by my count, compared to two times when someone asks Christ how to get eternal life (and only one of them actually wanted to know).

Those healings of all those bodies matter, millennia later. One big reason they matter is because healing matters. Another is because, by showing God’s power over death as well as by going through death ahead of us, Christ teaches us not to be dominated by fear of it.

All this is very personal for me. Nearly seven years ago, in April 2006, doctors gave me super-intense chemotherapy to cure my Hodgkin’s lymphoma. To help me survive the process, first they froze some of my stem cells (essentially, bone marrow, except that they filtered them out of my blood — actually drilling into bones is so 1990). Then, after the chemo and three days after Easter, they re-infused those cells back into my body to restart my bone marrow. I remember watching the tiny pink bag dripping through the IV, through which the seeds of survival would swim back into my veins, and then into my bones. Day by day, those cells moved invisibly inside my body, to grow and thrive.

Thanks be to God and to a lot of great nurses and doctors, they did cure my lymphoma. But now, as a late-breaking side effect, I have a different kind of cancer. (Yes, this sucks, but I’m still better off than if I’d died of the original cancer several years ago). So now, if all goes well, next year I might be spending another Easter in the hospital getting my own personal immunological rebirth. This time the point is to give me stem cells from a relative — cells that, Lord willing, will have an immune response that kills my cancer.

In my case, I have two siblings and a parent who are close enough to be stem cell donors — but there are many people in my shoes who don’t. That’s why, this Advent, I encourage everyone between the ages of 18 and 44 to consider joining the national bone marrow donor registry. It only takes an online survey and mail-in cheek swab to join. (Notwithstanding the name, in the unlikely event you’re matched and get the opportunity to donate, there’s usually no bone-drilling or anesthesia — just a series of shots to make your marrow overproduce into your blood, and then sitting next to a machine for a few hours while it filters out those lifesaving extra cells. I did this for myself back in 2006, and my main symptom was boredom).

As we prepare to celebrate God’s arrival in human flesh, as we start the liturgical year’s journey through a ministry in which Christ heals people’s bodies as well as their souls, there’s no better time to sign up to offer others the gift of life.

Reprinted with permission from http://www.sojo.net.

My small bit to fight individual obsessiveness/national medical costs

Although, as I’ve mentioned here and to anyone who’s asked me how I’m doing for the last five months (and a lot of people who haven’t), I’m pretty obsessed with my blood counts. So I am a bit proud of myself that today–when Dr. Virginia did not order counts for a routine checkup (because I had counts last week and will have more next week), but then said he could do counts if I really wanted to–I said no. It wouldn’t change my treatment any, and Dr. Virginia had just said he was fairly sure the Vidaza was working at least somewhat, so the mature thing was to not get more holes poked in my arms and more of society’s medical resources used up.

Of course, it’s a drop in the bucket compared to the necessary medical costs I’m incurring, but necessary things are what medical resources are there for.

It’s also a drop in the bucket compared to my general obsession with my blood counts, as witness my spending way too much time this evening making a scatter chart of them. These give my counts across the 28-day cycle as a percentage of day 1 of the cycle. For cycle 3 I had to extrapolate what day 1 was, as I only had days 5, 9, and 22.

scatter chart of data cycles 3 to 5

cycle 3 = blue diamonds; cycle 4=red squares; cycle 5=green triangles. There was an extra month between cycles 3 and 4 (hence the stat for day 35).

See, the platelets have a nadir around day 16 or so, while the white counts have a nadir around day 28 (i.e., the time the next cycle starts, except in cycle 3, which had an extra week tacked onto it for Christmas). Cycle 4 (the red squares) is an outlier because that extra week let my counts come out of the Vidaza-side-effect slump. I’ve got my chart all set up to insert the data for cycle 6 and see where that goes…

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Mailing Blood to Baltimore

Good gravy, what does a girl have to do in this town to get her blood mailed to Baltimore?

Now that Johns Hopkins has decided on my donor–my older sister–it reminds me of the saga of how the whole decision process got started, back last fall. Hopkins needed a blood sample. My mission: get the blood drawn and get it into Fed Ex.

Kaiser number smallIt all started off fine. Hopkins sent me a nice box with empty vials, instructions, and a prepaid Fed Ex medical sample shipment bag. Kaiser Permanente’s lab told me (I’m 90% sure) that they could put my blood in Fed Ex for me after drawing it. I took the Metro down to their swank new Capitol Hill location at lunch one Wednesday last month. Kaiser’s lab has a little ticket system with an electronic sign, like a high-tech deli, to tell you when the phlebotomist can see you now.

A box of blood! Garlic to deter vampires optional.

A box of blood! Garlic to deter vampires optional.

After drawing my blood, though, the phlebotomist said she couldn’t Fed Ex it for me (in contrast to one of my sisters, who got told she could not under any circumstances take custody of her blood after it left her body). No problem—there’s a Fed Ex/Kinko’s on my way back to the office. I took the box there.

wrong fed ex address small

Attention, Fed Ex at 14th and Irving: this other branch closed down a long time ago.

This is the point at which things became a wee bit trying. The Fed Ex folks said they couldn’t take it because it was a medical sample, and said I had to go to a full-service branch—they said the closest one was out near Catholic U. Fortunately I checked this when I stopped by the office to rehydrate, and I found out that a) there was a full-service branch on I St. & 14th that would be much faster to get to, especially since b) the branch they sent me to *didn’t exist anymore.*

After I shlepped 20 minutes each way to I Street, a competent helpful person took it, gave me a receipt, and told me there was no reason why the Keystone Kops at the Fed Ex near my office couldn’t have taken it, as it was already in the right package.

For some reason, the whole thing was more upsetting in person than it seems now that I write about it. Maybe there’s something visceral about carrying around your own blood, knowing that if it fails to get to Baltimore the next morning you’re going to have to go get three *more* tubes taken out. At least they were little vial tubes, not the poster mailing tube my younger sister whimsically imagined when I told her what would be in her kit.

Glad I’m not a vampire. Blood transport is exhausting.

All blog content copyright © 2012-2014 E. Palmberg. Guaranteed 100% brave and freaking noble.

Culinary Epiphany

indian food smallAs I look forward, God willing, to my stem cell transplant, which will involve significant nausea, I have realized something with complete clarity: The only reason why I should not eat Indian food every single day for the next month and a half is to make room for Ethiopian food.

All blog content copyright © 2012-2014 E. Palmberg. Guaranteed 100% brave and freaking noble.