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Pat’s Place: The Power Of Momentum
By: Pat Killingsworth; Published: November 6, 2015 @ 5:47 pm | Comments Disabled
In my column [1] last month, I shared details of my plan to push the envelope and undergo back-to-back, or tandem, autologous stem cell transplants.
I made a forceful point in that column about the importance of living in the moment; not looking ahead to the point that I lost precious days in the weeks leading up to the second transplant.
For the most part, I was pretty good at living in the moment. For example, I squeezed in a trip to Madison with my wife Pattie to see a University of Wisconsin football game. I also flew to Boston for some meetings with fellow myeloma patients and caregivers. I tried to make the most of every day. I have to admit, though, I slipped up a number of times as I anticipated the next trip to hell and back.
Before my second transplant, my third PET scan in four months showed some amazing news: my myeloma had continued to degrade, leaving only a measurable shadow in two of the most recent bone lesions.
While many specialists would have embraced the news and stopped there, my doctor insisted we proceed full speed ahead with the second transplant. At the time I was good with that. Stick to the plan and try to wipe out all the measurable myeloma. The hope is that this will allow me to stay on a less toxic maintenance therapy regimen. Remember, being a nonsecretor complicates things. So does the pesky clone that pops bone lesions at the drop of a hat.
What do I mean by “At the time I was good with that”?
In a number of ways, the second of my two transplants has gone better than the first one this summer. Yet the toughest, darkest days – Day Six through Day Ten – were literally unbearable. My white counts had bottomed out and allowed a bug in my gut to thicken my stomach lining, preventing most food or drink from passing through.
The pain was excruciating. My transplant team tried to control the nausea, but we couldn’t stay ahead of it. Nonstop diarrhea didn't help. I was so drugged up I fell as I tried to get from my bed into a wheelchair on the way for an emergency CT of my belly.
Steady doses of IV antibiotics – and steady engraftment of the over 8 million stem cells they infused back in me on Days One and Two – seem to have helped get everything under control again.
By the time this month’s column runs, I will have checked into a local hotel as an outpatient for a few more days. My docs here feel I can’t cut back the outpatient round of recovery and head home right away.
I haven’t forgotten about those five miserable days on the way to recovery. Honestly, if you would have given me a gun, there was a strong possibility I would have used it. I felt that bad.
One thing I've learned over the years stuck in cancer purgatory: celebrating fun things – and embracing well wishes from others – works best around the edges. When things are really hard, when the pain and complications knock you down, the "You can do this" cheerleading doesn't ring true, at least for me. On the most basic level, if you're sick enough, if you're in enough physical or emotional pain, nothing helps.
But before the high-dose chemo could kick in, knowing so many friends, family, and readers were supporting me meant the world. The same holds true for days like yesterday. I didn't feel great, but when my nurse, Scott, unhooked me from my IV, it was a big time emotional boost. Answering emails and comments had seemed like a chore. Now, almost like magic, the heartfelt support hit home.
One word sums up what I'm trying to say: momentum. Good news begets better news. Despair and pain can send you spiraling down.
Of course we won’t know for several more months how well the tandem transplants will work. All indicators point toward a good result. Does that make it all worthwhile? I’m pausing here. That’s how bad it was hanging on a half dozen days ago.
Compared to what I experienced two weeks ago, any obstacles or complications I’m running into now seem like a picnic. Thanks all for caring enough to take the time to help me move forward. I couldn’t have done it without you!
Feel good and keep smiling!
Pat Killingsworth is a multiple myeloma patient and columnist at The Myeloma Beacon. You can view a list of all his columns here [2].
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
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URL to article: https://myelomabeacon.org/headline/2015/11/06/pats-place-the-power-of-momentum/
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[1] column: https://myelomabeacon.org/headline/2015/10/03/pats-place-stem-cell-transplant-lets-play-two/
[2] here: https://myelomabeacon.org/author/pat-killingsworth/
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