Having a pretty bad day, so far. Running a bit of a low fever and just generally feel terrible…
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Running a low fever (if you mean a legit fever) is worth getting seen promptly if you’re a few days post op with a piece of plastic hanging out of your chest
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I, unfortunately, need to try to make it to Tuesday. It’s been one day since the procedure. I have dialysis Tuesday and then a follow up with my oncologist in the afternoon.
Describe what you mean by legit fever, which I don’t think I have. Fevers for me are often quite confusing, because cell death presents as fever in multiple myeloma. If the old treatment is still working, then this could be killing the myeloma causing the fever. The catheter is completely covered (incision and the leads), so it seems strange that it could be the problem if there is one.
Real fever is 100.4 or more.
Just be careful.
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Definitely not that high, thanks
I just want to say that I think you need more credit for these types of posts
You regularly offer advice, and while it doesn’t always land. It’s clear you are well intended and sharing your considerable expertise from a good place.
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I made it into dialysis and everything was ok with the wound. I ran no fever yesterday.
My biggest concern was that I had some sort of bleed into a pressure dressing on Saturday and I didn’t know if it was there when I did my dialysis. It had soaked through the dressing about the size of a quarter but was dried by Sunday. When I arrived at dialysis they said it definitely did not look like that in the last dialysis session.
I was nervous that pulling the dressing off would be painful because of the location of the bleed but it wasn’t. As I said, the wound was ok.
My appetite and taste buds have been crap since Sunday, so I’ve barely been able to eat anything. Hopefully that will all change soon.
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I had my follow up with my oncologist yesterday, and much of the meeting was as expected. It was to tell me the myeloma blood test from July was good news, and that nothing’s progressing as of August 20.
I told him about needing 2 new catheters since the last time I saw him and that both were because the cuff got exposed. I wondered aloud if maybe the reason this keeps happening is because my skin in that area is no longer strong enough to scar properly over the catheter. I have had 8 catheters there and he thought it was a possibility. We’re obviously all hoping this will be the catheter that gets me off of dialysis successfully.
I brought up that I thought the numbers in the last bloodwork made it seem like the treatment was still in me. He told me the molecules take 12 weeks to leave after treatment. That means I should expect the treatment to be fully clear of my body maybe around the end of September. He said side effects leaving often do not line up with treatment leaving, so there’s no telling what’s going to happen there yet but I should not expect it to happen before the treatment is completely out of me.
I mentioned my issues, especially with my knees, and he said that may take a while to go. I think he said months possibly, but I can’t remember, as he may also have said that they might not go away at all.
I asked about my immune system, and he said that may take a long time to repair. Unlike last time, I didn’t let that slide and triangulated him into an answer. I said, ‘what does a long time mean to you?’ He said, ‘months’. I said, ‘how many months?’ and he said, ‘many months, possibly a year’. Okay, good, now I know what to try to mentally prep for. My other biologic does not affect the immune system directly, so those numbers are not affected by it, which was good news.
He told me he’s closely monitoring three things, my urine (most important), the myeloma blood test (he likes the results but isn’t exactly sure he completely trusts them), and regular bloodwork. He says if he detects toxic proteins in my urine he’ll put me back on the main treatment, but said that’s not there as of the last test.
My next bloodwork is next Wednesday. My body will hopefully be fully acclimated to the new catheter by then, and hopefully I’ll be seeing better creatinine results. We’ll see.
Oh, and I did tell him that I felt I was beating the odds and that I didn’t seem to be on a downslide. He agreed with both assessments.
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Good news. Stay strong.
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Good stuff. Thanks for sharing
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Yesterday, I came up with the idea that I’m a long overdue library book. And we all know libraries never come after you. There’s no telling when I’m gonna be paying the fine but I’m not going back to the library myself.
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I hope your appetite has picked back up but if not, this stuff was a (literal) life-saver for me for a few months when I had no appetite. 530 calories / 8oz.
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Thanks. If my appetite and taste bud issues continue, I’ll look into it.
On another, note I’m somewhat nervous that the myeloma is trying to make a comeback based on something I’ve been going through since Thursday night. I have bloodwork on Wednesday, so I’ll know by Thursday if anything is going on. I’m braced for the results.
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Good luck Nunn
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I can imagine the sense that it’s coming back has to be overwhelming. Everything that reminds you of the something experienced before along with the inability to not worry has got to be hell (aside from the knowledge that cancer can and does recur).
Hang in there. A guy I know that “beat” some kind of cancer was big on he felt his nutritionist helped (who knows).
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yah i’ve always wondered how i’d keep myself from going insane assuming every sensation was “the cancer”. too soft mentally for that shit, bleh.
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It’s mainly that my body is having a reaction very similar to the early days of treatment. I’m not that overwhelmed by the idea of it returning, but I’m telling some people who I believe will be shocked if it does return this quickly, including my wife. I want them to be mentally prepared even if it’s nothing. If I do have to go back on treatment, I’ve gained an extra two months and that’s great, as I’m already well into bonus time.
Some of what’s going on with me could still be related to getting adjusted to the new catheter, but not that one thing that makes me nervous.
Keep in mind, I have no idea what the cancer feels like. I was under a form of treatment within 12 days of being in the hospital, and it was gone by the time I had my PET Scan 32 days later 13 days after I began treatment (delayed because of insurance). Most of the effects I felt were on my kidneys, but they’ve been basically dead since the hospital other than still being able to pee.
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When it hits, you’d be surprised what you can handle. People talk about fighting cancer. I don’t know what that is. I’m just trying to go day by day and dealing with whatever comes my way. I’m not standing there with a sword or anything yelling, ‘F*** YOU, MOTHERF***ERS!’
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Well THERE is your problem! :)
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If I ever get cancer there’s a good chance my obit reads “he lost a craven and quick battle with cancer; like most things in life, he half-assed the battle and gave up early”
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