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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 .


Article printed from The Myeloma Beacon: https://myelomabeacon.org

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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