So now what? (…and microscopic events)


Thursday, August 13th is the second Thursday since early October, 2019 that I have not taken Bertezomib or cyclophosphamide, the two main chemo meds that I’ve been taking for months. I’m still on a low dose of dexamethasone and now nortriptyline, along with low doses of hydromorphone. My palliative care team is now fully involved in my case because of the Bortezomib induced neuropathy I am experiencing. Oncologists know very little about pain and make no bones about it, as I’ve noted before, nor do most GPs, so it’s up to the palliative care doctors to do what they can to relieve pain. GPs are often left to deal with the pain their patients experience but it’s often a guessing game finding the right palliative. It’s best left to the experts.

As it turns out, hydromorphone may not be the best opiate for me. In fact, it may be exacerbating my pain issues. So, back to the drawing board. We’ll be modifying my pain med regime one step at a time to ascertain the impact of whatever it is we do without crowding the issue by changing more than one med at a time. I can tell you one thing: I’m sick and tired of being in mind-numbing pain all the time.

Frankly, I’m feeling somewhat adrift. I was so used to the chemo regime and now that it’s gone, I’m struggling with what to make of it. So many unknowns as I slide into a time without chemo but with no promise of remission or relapse. I’m sure I’m not alone in this living purgatory, somewhere between chemo and remission. My GP oncologist told me that he would be in touch in six weeks or so to see how I’m doing and, I suppose, to set up a schedule for follow-up blood work. I should be getting blood tests every three months or so to ascertain the state of the myeloma proteins in my blood. Once the proteins start increasing, it’s time to make a decision again about chemo. Sheesh.

Whatever, the bottom line (to use a business metaphor) is that I’m getting ever closer, as we all are, to the moment of my final breath. The closer I get the harder it is to deny it. The difference between you and me might be that I’ve been issued my ticket to ride, stamped and ready to go in the form of multiple myeloma.

No, I’m not immune to the lure of death denial. I’m not anxious to die. I don’t have a death wish. In fact, I have a life wish. But wishing and hoping aren’t going to get me past this one. It’s just so hard to fathom being dead although I can see that it would be a relief from American politics.

Lots of people urge me to be positive and/or stay strong. Well, I’m not curled up in a fetal position in a corner of the living room wailing and gnashing my teeth waiting to die. Still, it’s a bit daunting thinking that, like my parents, grandparents, and all ancestors, I will also be relegated to the dustbin of history, and in the not-too-distant future.

Yes, I stay positive. I’m registered for a webinar organized by the Multiple Myeloma Foundation set for this Saturday at 1 PM. I wouldn’t be doing that if I weren’t positive! The webinar is to inform us about the latest treatments for myeloma and the progress that’s being made to find a cure. Yes, some researchers and scientists are actively looking for a cure. Problem is they’ll never find a cure for death.

Yes, I stay strong, whatever that means. Sometimes I just want to scream about the injustice of it all, but I don’t. I stay calm, but I seethe inside quietly with my teeth clenched. Maybe that isn’t staying strong. I don’t know. One thing for sure is that when worse comes to worse, I won’t hesitate to get zonked on morphine. Suffering is highly overrated. I’m not sure what the virtue is in suffering. You tell me. Is there a reward?

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Okay, so now for something completely different. Some of you will know that a couple of weeks ago I got a microscope that I can use in conjunction with my iPhone. I get some great pictures and video with it. I also have a standard lab microscope that is actually more powerful than my Wi-Fi microscope, but it’s not easy getting pictures with it. The pictures below were all taken with the Wi-Fi microscope and my iPhone. The first three images are pretty straightforward. The others not so much. The first image (1) is of a dragonfly wing. The second is a photo of the eye of a tiny fly. Number 3 is a larger image of 2. Image 3 is of the spore sack of a fern. The 5th is much different.

Don’t get grossed out now, but the 5th image is a very enlarged view of a mole on my back! I know…eweeeew. Weird, eh? You might want to keep microscopes away from your body after seeing this. Number 6 looks very flesh like, but it’s a highly enlarged view of a plant part. I can’t remember which plant or which part. Number 7 is…I have no idea. I don’t recall taking this image, but it’s of some plant part. Reminds me that I have to more carefully document these things, not that I’m doing a systematic study of anything. It’s just interesting to do while I wait for my myeloma to return.

I’m finding some great inspiration for abstract paintings here.

6 thoughts on “So now what? (…and microscopic events)

  1. More microscope pics please. What fun!

    On Fri., Aug. 14, 2020, 11:57 a.m. Roger Albert – Always a Sociologist: Now Living With Myeloma, wrote:

    > Roger JG Albert posted: ” Thursday, August 13th is the second Thursday > since early October, 2019 that I have not taken Bertezomib or > cyclophosphamide, the two main chemo meds that I’ve been taking for months. > I’m still on a low dose of dexamethasone and now nortriptyline, along w” >

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    1. Certainly, Jack. I’ve got lots of things in the yard I need to explore. Seeds for one and flower parts. Insects too. I don’t want to kill them to watch them. The microscope is great for that. Yesterday I had a tiny spider trapped in the microscope and I was able to see it stick its tongue out. I didn’t get that on video, but I’ll keep trying.

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  2. Life is juicy under the lens.

    Ed

    On Fri, Aug 14, 2020 at 11:56 AM Roger Albert – Always a Sociologist: Now Living With Myeloma wrote:

    > Roger JG Albert posted: ” Thursday, August 13th is the second Thursday > since early October, 2019 that I have not taken Bertezomib or > cyclophosphamide, the two main chemo meds that I’ve been taking for months. > I’m still on a low dose of dexamethasone and now nortriptyline, along w” >

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  3. Roger, I love these photos…must be so much fun! I’ve been taking an Iphoneography course and I’d be interested in exactly what you’re using to get these results. Keep posting them, I can never get enough of new and different techniques. Thank you for sharing! Terry

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    1. Thanks, Terry. I bought a microscope after seeing an ad on Facebook in January. Because of Covid it didn’t get here until a couple of weeks ago. It took me a bit of time to figure out how to use it but my scientist daughter was here to help out. Once I figured out what it could do I set about looking for things to explore microscopically. The first thing I looked at was fern spores. They fascinate me. The microscope connects to my iPhone via its own Wi-Fi and I was able to take pictures and a video. I was so happy with the video of the spore sack being flung open by the spring-like mechanism that looks like a mealy worm. Patience is required but so is battery life on the microscope and my iPhone. It’s all fun. The microscope cost me something like $80. Not bad, really. Now I’m looking to find a way to take photos and video through my analog microscope which is slightly more powerful and sharper than the Wi-Fi one. There must be an adapter out there somewhere.
      Anyway, thanks for your comment.

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