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My Myelomaverse: Hold Up, Wait A Minute
By: Else Sokol; Published: August 5, 2020 @ 7:26 pm | Comments Disabled
I know it's been less than two months since I wrote another column [1] with the word ‘wait’ in the title, but it seems to be a recurring theme for me.
I was officially diagnosed with smoldering myeloma 10 years ago this month, and I have been in watch-and-wait mode since then. My original hematologist offloaded most of her patients last fall, and I was assigned a new doctor.
Predictably, but nothing I had actually anticipated, the new doctor wanted to know what he was dealing with when I showed up at his office in early February, right as Covid-19 was taking off in Seattle. So of course he ordered the dreaded bone marrow biopsy, my second in 10 years. He assured me that I would be comfortable, with twilight anesthesia (I didn’t’ have anything but local anesthesia the first time around and, frankly, it wasn’t terrible).
I went in one morning, not too concerned about the procedure itself. After all, I was going to get the good stuff, fentanyl and midazolam (Versed). But I guess they saved those for someone else. They either underdosed me or didn’t wait long enough for the medication to take effect. Before long, the tech was inserting the needle. No problem. Then she told me to exhale, and when I did, Yowza! She aspirated my bone marrow not once, but three times. As you all know, creating negative pressure in a closed space, in this case the bone cavity, yields incredible, indescribable pain. I was screaming. Then came the twisting to get the core sample. I was in tears. I’m German and fairly stoic, but this was a bit much.
I figured that the odds that the results of my biopsy coming back still in the smoldering range were very low. So I wasn’t that shocked (upset, yes, but not shocked) when my doctor shared his screen during our videoconference and it showed 60 percent plasma cells. I knew that meant treatment would likely start.
Or would it?
That was back in March, and since then Covid-19 has disrupted a lot of our medical care schedules. But it has also presented an opportunity to step back, hit pause, read, learn, and think a lot.
Although my doctor initially said I would need to begin treatment, I questioned the rationale of it. After all, we were in the middle of a pandemic, and I felt quite well and hesitant to bring on treatment with everything related to that. I was happy to find that, although my new doctor is young, he was smart and humble enough to consult with his more seasoned colleagues.
After consulting with the weekly tumor board, he backed off of his plan. The rationale was that I don’t have any high-risk markers, and according to Revised International Staging System and the latest diagnositic criteria for multiple myeloma [2], I am barely in stage 1. Of course I know that this could change at any time. However, I have the benefit of having 10 years worth of lab tracking, with at least 30 sets of lab data points along with numerous scans. All of these show that my particular flavor of myeloma hasn’t moved very quickly. So, after a negative PET/CT scan, the verdict was to watch and wait some more.
"What exactly are you waiting for?" I asked my doctor.
For my hemoglobin to drop further, my LDH to take off, my light chain ratio to increase tenfold, and my PET/CT scan to show hot spots, he replied.
I realize that there could be other covert things happening in my body, but there’s no sign of that now, so I’m comfortable getting lab work done every two months and keep on keeping on.
So that’s the scoop. I’m holding up, waiting some more. Onward I go, hoping to buy a little more familiar time in my myelomaverse.
May we all go from strength to strength!
Else Sokol is a multiple myeloma patient and columnist here at The Myeloma Beacon. Her column is published once a month.
If you are interested in writing a regular column to be published by The Myeloma Beacon, please contact the Beacon team at .
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URL to article: https://myelomabeacon.org/headline/2020/08/05/my-myelomaverse-hold-up-wait-a-minute/
URLs in this post:
[1] another column: https://myelomabeacon.org/headline/2020/06/19/my-myelomaverse-the-waiting-is-the-hardest-part/
[2] the latest diagnositic criteria for multiple myeloma: https://myelomabeacon.org/news/2014/10/26/new-multiple-myeloma-diagnostic-criteria/
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