Ask Me About Living with Multiple Myeloma Kidney

Sundry Chitchat
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We have no kids and my wife is mostly doing okay with it. She’s now my caregiver and drives me everywhere except my Thursday dialysis appointment. I basically can’t lift anything heavy, so am pretty much useless on helping around the house. A significant reason I didn’t want the stem cell transplant was because of how demanding those are on the caregiver. This has been very hard on her and I didn’t want to add additional burden to her. Luckily she works remotely on very off hours, so that makes it significantly easier for her. It is incomprehensible how grateful I am for her and all she’s done during this.

As for what’s important, I’ve always been grounded and don’t have many regrets. When it really hit me was when I realized I’m basically trapped in my city due to dialysis. You can travel and do it but it’s a massive pain. We had to cancel my wife’s 50th birthday Maui trip (would have been late November) last year, which was very disappointing. I do wonder if I’ll be able to get back there before my ashes are spread there.

The biggest regret is a massive TV project I’ve been in development on since 2018. I can no longer travel to be a part of it when it happens, unless I can get free from dialysis. We set up a big trip for interviews in Texas in December 2023 for the end of January 2024. Everything fell into place with a lot of people who were hard to schedule. Then about a week before the trip, the person it was mainly scheduled around had to back out because he got skin cancer on his face. They had to carve out a giant hole in his right cheek, so he was no longer camera ready. He is cancer free but we haven’t been able to interview him yet and have no ETA.

We had to reschedule another key interview from that trip because my producing partner didn’t want to pay our crew to sit around for 3 days. It was rescheduled for a week or so after in L.A. but the bad flood happened and we had to cancel at the last minute. We have not been able to reschedule him yet. We did get two major interviews done, but would have been in great shape if we’d been able to get all 4 done. I’m no longer confident I’ll be able live long enough to complete the project and am depending now on others to try to get it done at the level I’m hoping for. It’s still not moving with any sense of urgency, which is disappointing.

Most of the principals are very old. Almost all are 80+. I never thought they’d have a better chance of outliving me, but here we are. In this project’s development, we lost the author to cancer, two other principals had cancer that they’ve survived, and now me. That’s 4 of 7 main people who have been in that situation. Many people involved with the story have died since we began developing it. We’re getting close to moving on it again and I’m hoping that will motivate me to stick around as long as possible.

When I refilled my Dex prescription, the pharmacist said it’s really hard on the stomach but I haven’t noticed that. I’m on high dose but only before the Darzalex treatment, 10 4mg pills once every 28 days. At the very beginning of going on Dex, I only needed to sleep about 2 or 3 hours a day. That settled pretty quickly and I haven’t had anything resembling insomnia since. I don’t know if it’s caused any other side effects, because of how bad the Velcade side effects have been.

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Shoutout to your wife.

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I had no idea Dialysis caused that kind of pain. Doing some reading on it.

When you’re the furthest out from a dialysis day, are you able to get back to somewhat pain free or are even those days very difficult?

Love what you wrote about your wife. And you know you’d do it for her.

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Dialysis isn’t really causing the pain, I think it exacerbates other side effects. For me, and I have a CVC (Central Venous Catheter), I don’t really experience any pain in dialysis. On some occasions, if they try to take out too much, I may have relatively minor cramping in my legs. Today, I got a pretty bad below the calf left leg cramp that felt more like a tendon cramp than a muscle cramp with about 10 minutes left. I’m not sure if she took me off early but I could only relieve it by standing up. About 6 weeks ago, I tried to adjust one of my socks and ended up completely locking up my foot. That was very painful and took about 15 minutes to get rid of.

What I tend to feel after dialysis on those days happens about 2.5 to 3 hours afterward (minus taste buds, which happens usually within an hour). I will get this sensation in both my hands and feet that they’re iceblocks with kind of a numb feeling. Externally, my hands and feet are warm, so it’s an incorrect signal being sent to my brain that probably goes hand in hand with my cancer treatment side effects.

Most of my pain I feel is related to the cancer treatment, in my opinion. I know for certain there’s some kind of neuropathy going on because of what happens after my big treatment day. Usually about 24 hours after the treatment, the pain in my feet and knees tends to minimize anywhere from 80-95 percent for Saturday, Sunday, and usually into Monday. That allows me to climb the stairs at a normal pace and go down them normally. Once the side effects hit, I have to hold on to the banister and go down one step at a time on one leg because it’s just far too much pressure on my knees to walk down the stairs normally. Once that sort of thing started happening, I knew I wasn’t in actual pain, my brain just thinks I am. There aren’t really any pain free days for me, but those three days after my main treatment are about as close as it gets. Any time pain gets too much for me, I just try to sleep through it which is usually effective.

On dialysis days, my taste buds are kind of messed up and it makes you lose your appetite a bit. Sometimes, I can still eat fine, sometimes I can’t. The next day, it becomes more minimal and then I start all over again. My other days off from dialysis are Sundays and Mondays and I’m generally okay on eating on the Monday. It used to be that I’d feel my best on dialysis days, but now I feel my worst.

Thanks for the kind words.

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What’s a messed up taste bud like? Some kind of residual taste in your mouth?

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It’s more that it just tastes off. I don’t think you’re really supposed to have a taste in your mouth. It’s not metallic but what I’d describe it as is a weird almost spicy strange taste that can affect the taste of food. Sometimes it doesn’t, but it usually does a little bit when it’s prevalent.

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You write about this well, the signals mismatching between your body and brain.

The first time your hands and feet felt like ice, but externally felt warm, I bet that kind of thing could mess with you. Do you just ignore it now, or is it helpful to just think “my hands are fine, my hands are fine”. I’ve read some pop science books on how our brains can trick us, always fascinating.

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It’s unfortunately something I can’t ignore, since it’s quite uncomfortable. Sometimes, I’ve asked my wife to hold my feet to try to trick my brain into thinking my feet are actually warm. It’s worked to a small degree sometimes and others not at all. It’s just something I mostly deal with and when it gets too bad, we might use a Theragun on it or she tries to do a hand massage. I can generally get past it in my feet but it’s hard to get past it in my hands when it’s bad.

The only thing I’ll say is that even though I’m in the pain, especially in my knees, I know it’s not real. That doesn’t mean I try to push past the pain by trying to do stuff normally, I just know it’s seemingly not permanent.

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Sorry if I missed it, but are you on the kidney transplant list, or is that not possible because of the cancer that caused the kidney problems?

My dad just celebrated the 2nd anniversary of his transplant (just normal kidney failure for no reason). He was fortunate in two ways: 1) somehow he got to the top of the list at the age of 79, and 2) he avoided dialysis.

That’s all to say that if my old dad can get a kidney, anything is possible.

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I need to be 3 years in remission to be considered for one. That’s September of 2027 and is unfortunately well outside my life expectancy. That doesn’t mean I won’t last that long, I’m just not expecting to get anywhere near there as of now.

Congrats to your dad!

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You lose weight from all this? I would assume so. How was your weight before you got sick?

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I was 5’10" 192-194 before I got sick. As I was falling apart in the final week I went down to about 184, because I could barely eat anything. In the hospital they plumped me up with massive fluids through the first Saturday I was there (went in on Wednesday). I think I was blown up like a beached whale to about 210 for my frame. I lost almost all that fluid over the next 3 or 4 days and left the hospital 13 days later at I think around 174. I generally stayed around that weight for a few months but went severely downhill in weight after I accidentally pulled my CVC out. After it got replaced (the first one failed, so I had to get two surgeries on the same day), I stopped feeling as good, my kidney function stopped improving, and my weight started plummeting. I went down into the 150s.

About 6 DaraCyBorD treatments in, I started to have extremely severe toilet side effects (painless diarrhea) that caused me to lose around 8 pounds in one day for about 4 treatments until I brought up how brutal it was to my oncologist. He added one thing to my regimen and that unpleasantness completely stopped. On treatment days, I would massively load up on food if I could to try to beat the side effects with a goal of getting up to about 158 because I didn’t want to be under 150. Some of the bad side effect weeks I couldn’t get above 154 after doing that. At my lowest, I got down to about 146, but after the side effects were over I quickly built back up to about 153 before my next dialysis session, so I was never under 150 for more than a day or so. For a bunch of months I was stable in the 153 or 154 range, and at dialysis they were constantly lowering my target weight because I almost always came in under. For the vast majority of those dialysis sessions, they just did cleaning and no fluid pulling.

When my doctor started reducing my Velcade dose about 3 months ago, food started sticking to me much more than I expected. Like if I expected a meal would add 1.2 pounds, it would add 2.4 pounds and I generally wouldn’t lose any weight during my sleep. I started to go in a reverse direction in dialysis with weight. I’d generally gain 4-5 pounds no matter what I ate between the Tuesday and Thursday and Thursday and Saturday dialysis sessions. Between the Saturday and Tuesday dialysis sessions, I often would gain between 5-7 pounds. They’d always pull out as much as they could but it had the affect of pushing my target weight up to make it easier on me in dialysis.

With the complete removal of Velcade, over the past couple of days it seems like I’m not having the food stick to me as much anymore and my appetite seems to be reduced (still a little early to tell if I’m stabilizing). I only gained about 5 pounds between the Saturday to Tuesday dialysis, which is the lowest that’s been in a while and I ate plenty this weekend.

I don’t consider myself to be at a stable weight yet, but it looks like my body isn’t interested in going above 163.4 no matter what I eat in between dialysis sessions. My target weight is around 158 pounds and believe it or not, I’d like to be a little lower.

Even with the massive weight loss, I don’t look sick in photos at all. I move like I’m sick, but I don’t really look it if I wear clothes that fit (I generally wear baggy t-shirts for dialysis). I’m always in a mask in public, so no one would be able to tell if my face looked off.

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Are there any books/movies/music/outdoor stuff (eg local hikes, national parks) that you want to make sure you revisit soon? Or do/see for the first time? Or is stuff like that not on your radar because of fatigue and treatment

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Sorry that you are going through so much but it is fascinating and I appreciate your honesty and detail.

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There are certainly movies I’d like to see that I haven’t gotten around to yet. I read the Sly Stone and Maurice White biographies which were outstanding. I’m continuing to read the newspaper research for my TV project and am still not even halfway through it. I do a lot of remastering of songs and still do sound work from home for the movie business. I was extremely busy for my work until the beginning of May and will get extremely busy again in a few weeks until I don’t know when.

The thing I miss is golf. I can’t do that with a CVC and I doubt I’d even remotely have the strength to do it anyway right now. No real outdoor stuff as physical activity really wears me out quickly. I don’t usually go to the store but did that on my way home from dialysis last week and after I unloaded everything I was winded for the rest of the day. I didn’t like that at all. I’m now mostly a homebody and generally just watch TV, do remasters, occasionally work on my YouTube channel, work, and relax as much as I can between dialysis sessions and doctor’s appointments (not many appointments anymore). Some days I will admit I’m bored.

I’d take some good TV recommendations as there’s so much out there now I’m finding it hard to keep up. I just finished Prime Target on Apple TV+. That was a total waste of time that I knew would be a waste of time 3 episodes in. I got stuck and then just decided to plow through after episode 5. Don’t watch that if you haven’t.

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Sorry to hear this news. :heart: to your wife.

What other support do you have?

Besides the mask is there anything else you can attribute your lack of infection to?

Stem cell transplant still on the list if things change?

Take care. Do the important stuff. F the rest.

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Thanks.

Physical support is just me and my wife. My sister could probably help out if necessary but it’s not right now. Moral support is all across the country but I don’t do much reaching out myself. I’m happy to talk whenever anyone calls but often don’t have the desire to reach out myself right now.

I have very little one on one interaction outside of doctors, dialysis, and obviously my wife. I’ve been in several high risk situations and haven’t had anything happen. The scariest thing I did, in my opinion, was seeing Sinners twice in the movie theater. I thought if something was going to happen, it would be during one of those. I basically think it can be attributed to the level 3 surgical mask working. The numbers related to stopping infections in my bloodwork are extremely low, so it just makes the most sense that being careful and wearing the mask are the keys, with a big emphasis on the mask. I wear it door to door, any time I go out of the house just being extra careful.

As of now, I doubt I’ll try to get the stem cell transplant at any point. I’m more of a fan of this running its course and I’d also probably still have to use the same doctor that I don’t trust if it were to happen. She’s the only one in state from what I can tell. She told me during the final consult that I’d be getting numerous bone marrow biopsies and that I’d have to learn to deal with the pain of that…after she’d told me when I brought up that I heard bone marrow biopsies were painful in clinical settings, ‘not with me’. She straight up lied to me and I can talk a little about bone marrow biopsies if anyone is interested.

My main goal is to remain motivated to stick around. A lot of people hold onto their lives with every ounce of their being when faced with something like this, doing every last thing to try to get any extra time no matter what it does to them. I’m not one of those and am ready to go when my time comes. I’m not rushing out the door, but I’m not fighting tooth and nail either. Based on my experiences in the hospital, I have a do not resuscitate, so if my heart stops that’s it.

My goal is to get to a point where I can actually live again instead of just being alive, but that really will only happen if I can get off dialysis.

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