Entry tags:
Writing notes about being sorry
It's been almost two weeks since I posted about my weird Schrödinger's terminal illness, but I haven't had much to report in terms of forward momentum, though things are starting to happen not so much all the time.
I was supposed to have an MRI on Wednesday and then an appointment with the hematology oncologist, but they had to reschedule my MRI to this Saturday because a) the technician was out at the Broadway clinic and b) the machine was broken. Which, just, yikes.
I was unfortunate because the oncologist was definitely looking forward to seeing those results, since there's not much for them to see on a bone scintigraph. But he asked me a lot of questions and did some tests where he kind of whacked and pressed on me in a bunch of places (not hard) to see about pressure and pain levels, and we went over my history with the colon cancer--apparently myeloma can show up as cancer in a number of other places, but colon is not one of the usual ones. There's also no family history except my twin's, of course, but we talked about that a bit too.
He seemed like a decent guy and took his time with me, wasn't super rushed like I remember my mom's oncologist being because he had so many patients. He wanted a very thorough blood workup (they took 8 vials!!) and then another different type of bone x-ray called a bone survey, as well as a CT scan. Then I go back to see him on Friday. He said there's no reason to panic yet, as it's possible it's something else, but I said, "It doesn't seem like the odds are in my favor." He didn't disagree, but he said that I seem to be in pretty decent shape so he's going to think positive.
I found it interesting that unless he had to, he stayed way across the room from me so we could pull our masks down--he is from India, and I think he knows people probably have trouble with his accent here in the great white PNW, so he was making it comfortable for me and the rest of the time we pulled them up. I got the impression he really did want to get to know his patients. When I left, he said "if you don't hear from me immediately, that's good, no news is good news" but I did notice that when I looked up what some of the things in my blood test results meant, the three that were far outside the normal levels were all linked to indicating a couple things, multiple myeloma being the primary one. So, like I said, the odds aren't in my favor here. If I've got holes in my neck bones, that's not good just in general, you know. Also, he'd asked if anyone had recommended a cervical collar, and for some reason that was the most terrifying thing of all to me, especially after what happened to someone I know here in fandom.
I do have limited neuropathy--the numbness isn't bad enough most of the time I can't shake it off, but I know that was one of his major concerns. He was very glad that the sports medicine doc had talked to my PT and suggested I stop PT for now as well as the cervical traction, both of which are things I love and I have felt the loss of the past couple weeks. My PT has been checking in on me, she's so great, and I'm gonna miss her when she leaves soon to have her baby. (Assuming I get better news and can go back.)
I'm bruised up all over because as usual, they couldn't get a vein on me, so I'm kind of dreading the contrast dye on Monday at the CT scan. But none of that sounds as bad as a bone marrow biopsy, which I guess is the last stage if they can't diagnose me with any accuracy the other ways. ::very sad face::
I'm stressed, and kind of sick, and there was a two-pound difference when they weighed me which I don't know is related to me walking more to keep my mind off it or that it's because one of the primary signs of myeloma is weight loss and fatigue/anemia. I did laugh a bit when he asked me about the situation at home and if I had help at home, and I had to tell him no, which he added to my patient notes. (I didn't know how to explain the fan friends network, so I just said, I'll have to start talking to friends.) So that's where I'm at right now. I'd love to not have to drive tomorrow to the MRI just because it'll be dark when it's time to go home and I'm so fucking blind right now, but it's too expensive to take a lift. I might take a bus to downtown and the Lyft home...or may just suck it up and drive. (they did say they'd comp my parking because of the reschedule and change of facilities, though I have no idea how that works.)
On the nicer side,![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png)
belmanoir knitted me the most beautiful shawl! It's lavender and has this lovely pattern with different stitches on two halves, and they're so intricate and pretty, and the merino wool is as soft as angel hair. I developed a wool allergy a while ago, and can't even wear my finest, priciest cashmere or merino or alpaca without something underneath it,, but this is so snuggly and cosy and has the softest hand. And a three-year-old friend of hers suggested that it needed to have a heart-shaped button on it, because that's how three-year-olds roll, you know, and she was absolutely correct--there's a button in the middle of it and I love it.
I am just in awe of people who can knit and crochet and needlepoint. I'm so lousy at that sort of thing, and how someone can follow a pattern and knit these delicate, artistic stitches is beyond me. I want to sit down with my copy of Sailor's Delight, a cup of French breakfast tea, and my shawl and read.
I need to finish Reverie, especially if I'm gonna have a limited lifespan left, but I also now want to write the Groundhog Day story for Kings that I'd been thinking of writing for Yuletide before bel whacked me on the head and brought me to my senses that it wasn't doable in my state. Though judging by the complete lack of response the Kings story I did write for Yuletide got this year, I'm not sure if that's worth the effort. It was perennially kind of a popular Yuletide fandom, but apparently that's not true anymore? Or maybe it was just me. I still love my poor tortured gay baby, though.
I was supposed to have an MRI on Wednesday and then an appointment with the hematology oncologist, but they had to reschedule my MRI to this Saturday because a) the technician was out at the Broadway clinic and b) the machine was broken. Which, just, yikes.
I was unfortunate because the oncologist was definitely looking forward to seeing those results, since there's not much for them to see on a bone scintigraph. But he asked me a lot of questions and did some tests where he kind of whacked and pressed on me in a bunch of places (not hard) to see about pressure and pain levels, and we went over my history with the colon cancer--apparently myeloma can show up as cancer in a number of other places, but colon is not one of the usual ones. There's also no family history except my twin's, of course, but we talked about that a bit too.
He seemed like a decent guy and took his time with me, wasn't super rushed like I remember my mom's oncologist being because he had so many patients. He wanted a very thorough blood workup (they took 8 vials!!) and then another different type of bone x-ray called a bone survey, as well as a CT scan. Then I go back to see him on Friday. He said there's no reason to panic yet, as it's possible it's something else, but I said, "It doesn't seem like the odds are in my favor." He didn't disagree, but he said that I seem to be in pretty decent shape so he's going to think positive.
I found it interesting that unless he had to, he stayed way across the room from me so we could pull our masks down--he is from India, and I think he knows people probably have trouble with his accent here in the great white PNW, so he was making it comfortable for me and the rest of the time we pulled them up. I got the impression he really did want to get to know his patients. When I left, he said "if you don't hear from me immediately, that's good, no news is good news" but I did notice that when I looked up what some of the things in my blood test results meant, the three that were far outside the normal levels were all linked to indicating a couple things, multiple myeloma being the primary one. So, like I said, the odds aren't in my favor here. If I've got holes in my neck bones, that's not good just in general, you know. Also, he'd asked if anyone had recommended a cervical collar, and for some reason that was the most terrifying thing of all to me, especially after what happened to someone I know here in fandom.
I do have limited neuropathy--the numbness isn't bad enough most of the time I can't shake it off, but I know that was one of his major concerns. He was very glad that the sports medicine doc had talked to my PT and suggested I stop PT for now as well as the cervical traction, both of which are things I love and I have felt the loss of the past couple weeks. My PT has been checking in on me, she's so great, and I'm gonna miss her when she leaves soon to have her baby. (Assuming I get better news and can go back.)
I'm bruised up all over because as usual, they couldn't get a vein on me, so I'm kind of dreading the contrast dye on Monday at the CT scan. But none of that sounds as bad as a bone marrow biopsy, which I guess is the last stage if they can't diagnose me with any accuracy the other ways. ::very sad face::
I'm stressed, and kind of sick, and there was a two-pound difference when they weighed me which I don't know is related to me walking more to keep my mind off it or that it's because one of the primary signs of myeloma is weight loss and fatigue/anemia. I did laugh a bit when he asked me about the situation at home and if I had help at home, and I had to tell him no, which he added to my patient notes. (I didn't know how to explain the fan friends network, so I just said, I'll have to start talking to friends.) So that's where I'm at right now. I'd love to not have to drive tomorrow to the MRI just because it'll be dark when it's time to go home and I'm so fucking blind right now, but it's too expensive to take a lift. I might take a bus to downtown and the Lyft home...or may just suck it up and drive. (they did say they'd comp my parking because of the reschedule and change of facilities, though I have no idea how that works.)
On the nicer side,
belmanoir knitted me the most beautiful shawl! It's lavender and has this lovely pattern with different stitches on two halves, and they're so intricate and pretty, and the merino wool is as soft as angel hair. I developed a wool allergy a while ago, and can't even wear my finest, priciest cashmere or merino or alpaca without something underneath it,, but this is so snuggly and cosy and has the softest hand. And a three-year-old friend of hers suggested that it needed to have a heart-shaped button on it, because that's how three-year-olds roll, you know, and she was absolutely correct--there's a button in the middle of it and I love it.I am just in awe of people who can knit and crochet and needlepoint. I'm so lousy at that sort of thing, and how someone can follow a pattern and knit these delicate, artistic stitches is beyond me. I want to sit down with my copy of Sailor's Delight, a cup of French breakfast tea, and my shawl and read.
I need to finish Reverie, especially if I'm gonna have a limited lifespan left, but I also now want to write the Groundhog Day story for Kings that I'd been thinking of writing for Yuletide before bel whacked me on the head and brought me to my senses that it wasn't doable in my state. Though judging by the complete lack of response the Kings story I did write for Yuletide got this year, I'm not sure if that's worth the effort. It was perennially kind of a popular Yuletide fandom, but apparently that's not true anymore? Or maybe it was just me. I still love my poor tortured gay baby, though.
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And, I'm with you about the awe for people who can do things with stitches, fabric crafts and all that! I was recently hearing a little bit about weaving from
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I wish the news wasn't so myeloma-pointy though. {{{hugs}}}
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Also, mr. sdw's mom and aunt both had/have multiple myeloma (his aunt has had it for several years now), so if it does turn out that way and you'd like some direct experience, please reach out. Sending hugs and love.
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*hugs*
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Wish I was closer and could help out. I'll be sending out good thoughts for good results on the next batch of tests.
::hugs::
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