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Myeloma Mom: Stem Cells On Ice
By: Karen Crowley; Published: November 27, 2013 @ 11:47 am | Comments Disabled
For me, November will always remind me of harvest time – my stem cell harvest time.
Six years ago this month, my family and I spent three weeks at the Mayo Clinic in Rochester, Minnesota, so I could undergo stem cell collection. I wasn’t yet ready for a transplant, but my doctor wanted me to collect enough stem cells for three autologous stem cell transplants and then freeze and store them for future use.
During those three weeks at Mayo, I was able to squeeze out 10.4 million stem cells. They are still on ice in Minnesota, waiting for me.
I think about my cells from time to time, but especially in November, when I can check off yet another year that I didn’t need them. It’s a little strange to think that part of my body – a useful, important part of my body – is in storage somewhere.
Things I wonder about: Do my cells miss me? What does the storage facility look like? Are people taking good care of them? If I need to have a transplant when I’m, say, 42, will using cells harvested when I was 32 make me feel 10 years younger?
Here’s the backstory: I was diagnosed with smoldering myeloma in the fall of 2005. My doctor at Mayo advised no treatment, and we took a “watch and wait” approach. A year and a half later, when my white cell count dropped and I became anemic, I started a regimen of Revlimid [1] (lenalidomide) and dexamethasone [2] (Decadron). I had a good response to the drugs, so six months later I was able to take a short break from treatment and harvest my cells.
The Mayo Clinic has lodging for transplant patients, but my husband and I wanted to bring our daughter (who was then two years old), as well as my parents to help take care of her. We were able to find an apartment complex that rented to patients like me, and we got a nice two-bedroom within walking distance of the clinic. In fact, it was right in the middle of everything, connected by indoor walkways to the clinic, as well as a mall, a public library, and a Barnes and Noble. My parents and my daughter loved to explore the hallways and set out on daily adventures.
Looking back, I should have relaxed and enjoyed the adventure, too, but I didn’t. Not at all.
In the days leading up to the harvest, I had to undergo a series of tests, including a bone marrow biopsy and enough blood tests to require 23 vials of blood. Each day, I needed injections of medication to stimulate the growth of the stem cells.
I had a line surgically implanted in my neck. Two tubes dangled out of it; during the collection process, a machine sucked blood out of one tube, filtered out the stem cells, and returned the blood to my body through the other tube.
It was a slick invention, to be sure, but it looked really, really gross. I had to make an emergency trip to the mall to buy a bunch of turtleneck sweaters so nobody would have to look at that thing. Plus, I lived in constant fear of my two-year-old playfully yanking on the line and, well, killing me.
My doctor had warned me that the collection process itself wasn’t painful, it was just really, really boring. She was right about that. I spent five hours a day in a bed, hooked up to a machine. Sometimes I’d sleep. Sometimes I’d read. Most of the time I’d watch The Golden Girls or Little House on the Prairie. In theory, that sounds heavenly. You wouldn’t think that lying in bed for five hours would be exhausting, but it was. By the time we got back to the apartment each day, I’d need to lie down again.
And it turned out I was a slow collector. My stem cells were like sluggish little turtles, meandering into the tube whenever they felt like it. It took me eight days – with several days “off” in between to let my body grow a few more of my turtle stem cells – to collect my 10.4 million cells.
I even had to collect on Thanksgiving Day. I watched the Macy’s Thanksgiving Day Parade on TV, and the sweet nurses brought me pumpkin pie.
But I got it all done, and I know I shouldn’t complain about any of this stuff. I was lucky to get all of these cells. I have been lucky to not need them so far. I know all of this is part of the drill for myeloma patients, and I made it through.
But here’s the hardest part, and the part I can’t forget: For three weeks, I couldn’t be a regular mom. Because of the line in my neck, I wasn’t allowed to lift anything heavier than 10 pounds. Since my daughter weighed around 30 pounds, this was a problem. No lifting her into the bath or out of the portable crib. No putting her in her booster seat at breakfast time, and no picking her up just for fun.
Once she got a dirty diaper at the Rochester public library and flatly refused – as only a stubborn two-year-old can flatly refuse – to let my husband take her to the restroom to change her. She only wanted me. We had to drag our stinky, screaming child all the way back to the apartment. It seems like a funny anecdote now, but at the time I was in tears.
I was used to being an active mom, and now I couldn’t take care of her on my own. That was tough.
At the end of the month, I finally got the word that I had hit – and even slightly surpassed – my stem cell goal. My line was pulled out, we packed up our things, and we drove through a blizzard to get back to Kansas City. I was able to go back to my regular-mom life, and my stem cells were put on ice.
My local oncologist here in Kansas City, once joked, “Stem Cells on Ice. That sounds like a Disney show that’s coming to the Sprint Center!”
After that, I started picturing a bunch of cute little cells all bundled up in scarves and wearing ice skates. They look sad because they’re cold. Tough luck, little cells. I’m glad all those little guys are available, and I worked hard to get them, but I hope I never need to thaw them out.
Karen Crowley is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of her columns here [3].
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URL to article: https://myelomabeacon.org/headline/2013/11/27/myeloma-mom-stem-cells-on-ice/
URLs in this post:
[1] Revlimid: https://myelomabeacon.org/resources/2008/10/15/revlimid/
[2] dexamethasone: https://myelomabeacon.org/resources/2008/10/15/dexamethasone/
[3] here: https://myelomabeacon.org/author/karen-crowley/
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