Everything happens so much
Mar. 6th, 2023 03:37 pm![[personal profile]](https://www.dreamwidth.org/img/silk/identity/user.png){kind=small}
gwynIt's been a couple weeks since I posted last about the myeloma shenanigans. There's been...just a lot of activity and it kind of boggles my mind that despite so much happening, I still don't have a true diagnosis, even though the oncologist is "99 percent certain it's myeloma." And it's mind boggling as well that all this has only been about a month. It certainly feels like years and years.
I had an MRI, what's called a skeletal survey or bone survey, and a CT scan done after my last post. I cried during the MRI and CT scan, partly from stress and partly from the pain in my arm where the only vein anyone could get on me was getting dug around in over and over and it hurt like fuck. I am at these things all alone, too, and I feel really lonely and isolated and overwhelmed. The woman who did the bone survey asked me if they were trying to rule out cancer, and I said, "More like trying to rule it in." In the oncology offices, I'm the only one in the waiting area without someone with me.
As per the uzh, they dumped the results of my bloodwork, scans, and other tests in MyChart and no one called to talk to me about them. I was just left on my own to figure it out, I guess. It was five days before I was due to see the oncologist again. He'd said "no news is good news" in the first appointment, but I was like, "All I see is bad news but no one talks to me." I think he really misunderstood what I was so annoyed about, I think he thought I was griping about the volume of test results.
He said I was not showing a certain protein that is usually sky-high in myeloma patients but was very low in my bloodwork, so it could mean I had a rare type of this supposedly rare cancer. So he wanted to do a 24-hour urine test--I had to pee in a thing and keep it in a jug in the fridge from Sunday morning to Monday morning. So hygienic, so fun. I pee way too much on a given day, so I dehydrated the hell out of myself because that jug was nowhere big enough. And he explained that he'd been consulting with the spine specialists to see if I needed to have surgery on my neck to stabilize it right away. The consensus was that I didn't but I'm not allowed to do any kind of neck exercises (necxercises!) and I am supposed to be very careful about it, which is a drag because the pain is so bad and now that I'm not in PT, it hurts constantly.
They really want a bone marrow biopsy and they were talking about doing two--one is only done way the hell over in Issaquah, which is like an hour away in traffic, and it's under light sedation, so I had to get someone to take me there and back. I am really not looking forward to this. It's called guided something or other, and I guess they use some high-tech equipment most places don't have to get the bone marrow from my neck. Then they will start radiation depending on what they find in the biopsy.
I got a call from the radiation people to set up an appointment, but once again (people keep calling me about stuff and I have not heard anything about it!) I didn't know what they were talking about--I told the guy that I had not talked about it with anyone beyond "this will happen once we have a true diagnosis" and so he said he'd look into it. All this was happening while I was freaking out about insurance, because I didn't think anything in the hospital system I was looking at would be in network. Well, god bless either Joe Biden or some functionary somewhere in our state because I guess there were some changes to the ACA rules and the network of providers was adjusted somewhere in 2021, and I finally today got confirmation that these procedures are supposedly covered.
Though, I also got a bill for an astronomical amount for the first appointment with the oncologist, denied because it was coded as a first appointment but I had an "existing relationship." Fortunately, I got that straightened out, though I have a lot of billing stuff I still have to work out and I'm not sure how I will pay for a lot of this shit.
Anyways, I asked his office if I could do a video visit or call with him this week because I was in tears of frustration about no one talking to me, and so I got up early this morning to talk to him. I told him people keep calling me for appointments, but that I knew nothing about what's happening, and he explained some of what was going on--not that it makes me less annoyed, but at least I have a couple of answers I didn't have before. The bone marrow biopsy is the big thing right now, and then radiation to stabilize the lesions (holes) in my C6 vertebra, and then after that "chemotherapy," which I kind of freaked out about in the in-office visit, but that he assured me wasn't like what I experienced with my mom and sister and Sandy, that it's called that but it's not what most people with other cancers do in chemotherapy.
It sounds like a lot of it is about putting the thing that's creating cancerous cells in my bone marrow to a stop through the radiation, then maintaining that "remission" and building back some of the bone that has been eaten away. Or something, I'm not sure I fully understand everything. He said the drugs wouldn't have the same kinds of side effects, that I wouldn't be barfing my guts up and losing my hair, as I'd put it, but of course everyone has individual reactions to things and it might take time to figure out what works for me specifically. He also said that he thinks the radiation will help with the pain, which is my biggest concern. And he'd be willing to prescribe some dilaudid for me, which I'd love but I think I will hold off on for the future, at this point. I mostly wanted to know if taking so much Advil was going to be bad with all this treatment stuff.
So that's basically all I know right now--not a lot more than I did last time, and it all feels very scary right now. I'm stuck with these providers for the year, but I may re-evaluate what I want to do for next year depending on how it goes. There are only two hematology oncologists at my clinic, and the other doesn't take new patients, so if things don't go smoothly, I'll have to think on it some.
I guess I'm glad I had selected a better level of insurance this time; I went with a much, much more expensive plan so that I'd be able to have the cataract surgery paid for, but who knows if/when that will happen. It sounds like I'd have to wait for "remission," whatever the hell that looks like, and in between drug treatments, and that sounds like it would be super complicated to time correctly. He said it's possible to have surgery, but I honestly don't know how long I'll have to wait now. I hate being this blind, though. It just gets worse and worse all the time.
I did not tell him that I have no interest in prolonging my life if it means suffering. People seem to really freak out when I say that. But I just have no great desire to live in this shithole world anymore, so if I'm going to be sick and weak and blind, it's not worth it. That's a subject for another day, I guess, once I actually get a final freaking diagnosis.
Also, the funniest thing in the world to me is that this is constantly referred to as a rare cancer, and yet almost everyone I've talked to about it knows someone who's had it or had it before they died.
I had an MRI, what's called a skeletal survey or bone survey, and a CT scan done after my last post. I cried during the MRI and CT scan, partly from stress and partly from the pain in my arm where the only vein anyone could get on me was getting dug around in over and over and it hurt like fuck. I am at these things all alone, too, and I feel really lonely and isolated and overwhelmed. The woman who did the bone survey asked me if they were trying to rule out cancer, and I said, "More like trying to rule it in." In the oncology offices, I'm the only one in the waiting area without someone with me.
As per the uzh, they dumped the results of my bloodwork, scans, and other tests in MyChart and no one called to talk to me about them. I was just left on my own to figure it out, I guess. It was five days before I was due to see the oncologist again. He'd said "no news is good news" in the first appointment, but I was like, "All I see is bad news but no one talks to me." I think he really misunderstood what I was so annoyed about, I think he thought I was griping about the volume of test results.
He said I was not showing a certain protein that is usually sky-high in myeloma patients but was very low in my bloodwork, so it could mean I had a rare type of this supposedly rare cancer. So he wanted to do a 24-hour urine test--I had to pee in a thing and keep it in a jug in the fridge from Sunday morning to Monday morning. So hygienic, so fun. I pee way too much on a given day, so I dehydrated the hell out of myself because that jug was nowhere big enough. And he explained that he'd been consulting with the spine specialists to see if I needed to have surgery on my neck to stabilize it right away. The consensus was that I didn't but I'm not allowed to do any kind of neck exercises (necxercises!) and I am supposed to be very careful about it, which is a drag because the pain is so bad and now that I'm not in PT, it hurts constantly.
They really want a bone marrow biopsy and they were talking about doing two--one is only done way the hell over in Issaquah, which is like an hour away in traffic, and it's under light sedation, so I had to get someone to take me there and back. I am really not looking forward to this. It's called guided something or other, and I guess they use some high-tech equipment most places don't have to get the bone marrow from my neck. Then they will start radiation depending on what they find in the biopsy.
I got a call from the radiation people to set up an appointment, but once again (people keep calling me about stuff and I have not heard anything about it!) I didn't know what they were talking about--I told the guy that I had not talked about it with anyone beyond "this will happen once we have a true diagnosis" and so he said he'd look into it. All this was happening while I was freaking out about insurance, because I didn't think anything in the hospital system I was looking at would be in network. Well, god bless either Joe Biden or some functionary somewhere in our state because I guess there were some changes to the ACA rules and the network of providers was adjusted somewhere in 2021, and I finally today got confirmation that these procedures are supposedly covered.
Though, I also got a bill for an astronomical amount for the first appointment with the oncologist, denied because it was coded as a first appointment but I had an "existing relationship." Fortunately, I got that straightened out, though I have a lot of billing stuff I still have to work out and I'm not sure how I will pay for a lot of this shit.
Anyways, I asked his office if I could do a video visit or call with him this week because I was in tears of frustration about no one talking to me, and so I got up early this morning to talk to him. I told him people keep calling me for appointments, but that I knew nothing about what's happening, and he explained some of what was going on--not that it makes me less annoyed, but at least I have a couple of answers I didn't have before. The bone marrow biopsy is the big thing right now, and then radiation to stabilize the lesions (holes) in my C6 vertebra, and then after that "chemotherapy," which I kind of freaked out about in the in-office visit, but that he assured me wasn't like what I experienced with my mom and sister and Sandy, that it's called that but it's not what most people with other cancers do in chemotherapy.
It sounds like a lot of it is about putting the thing that's creating cancerous cells in my bone marrow to a stop through the radiation, then maintaining that "remission" and building back some of the bone that has been eaten away. Or something, I'm not sure I fully understand everything. He said the drugs wouldn't have the same kinds of side effects, that I wouldn't be barfing my guts up and losing my hair, as I'd put it, but of course everyone has individual reactions to things and it might take time to figure out what works for me specifically. He also said that he thinks the radiation will help with the pain, which is my biggest concern. And he'd be willing to prescribe some dilaudid for me, which I'd love but I think I will hold off on for the future, at this point. I mostly wanted to know if taking so much Advil was going to be bad with all this treatment stuff.
So that's basically all I know right now--not a lot more than I did last time, and it all feels very scary right now. I'm stuck with these providers for the year, but I may re-evaluate what I want to do for next year depending on how it goes. There are only two hematology oncologists at my clinic, and the other doesn't take new patients, so if things don't go smoothly, I'll have to think on it some.
I guess I'm glad I had selected a better level of insurance this time; I went with a much, much more expensive plan so that I'd be able to have the cataract surgery paid for, but who knows if/when that will happen. It sounds like I'd have to wait for "remission," whatever the hell that looks like, and in between drug treatments, and that sounds like it would be super complicated to time correctly. He said it's possible to have surgery, but I honestly don't know how long I'll have to wait now. I hate being this blind, though. It just gets worse and worse all the time.
I did not tell him that I have no interest in prolonging my life if it means suffering. People seem to really freak out when I say that. But I just have no great desire to live in this shithole world anymore, so if I'm going to be sick and weak and blind, it's not worth it. That's a subject for another day, I guess, once I actually get a final freaking diagnosis.
Also, the funniest thing in the world to me is that this is constantly referred to as a rare cancer, and yet almost everyone I've talked to about it knows someone who's had it or had it before they died.
no subject
Date: 2023-03-07 12:54 am (UTC)no subject
Date: 2023-03-07 01:32 am (UTC)no subject
Date: 2023-03-07 01:42 am (UTC)no subject
Date: 2023-03-07 01:51 am (UTC)no subject
Date: 2023-03-07 01:53 am (UTC)*hugs*
no subject
Date: 2023-03-07 02:10 am (UTC)no subject
Date: 2023-03-07 02:49 am (UTC)I'm sending you all sorts of <3 and thoughts - they may not make it easier, but I care, and wish I could do something more substantial
no subject
Date: 2023-03-07 08:17 am (UTC)no subject
Date: 2023-03-07 11:20 am (UTC)It's such an awful situation to be in to have to manage complex health problems alone. And your messed up insurance system seems to be only reliable at creating more stress for sick people. I'm sorry you have to wrangle that on top of everything.
no subject
Date: 2023-03-07 12:42 pm (UTC)no subject
Date: 2023-03-07 06:15 pm (UTC)no subject
Date: 2023-03-07 08:12 pm (UTC)no subject
Date: 2023-03-08 12:31 am (UTC)*huggggs*
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Date: 2023-03-08 04:56 am (UTC)no subject
Date: 2023-03-08 07:43 am (UTC)no subject
Date: 2023-03-08 04:41 pm (UTC)no subject
Date: 2023-03-08 09:02 pm (UTC)no subject
Date: 2023-03-09 10:01 pm (UTC)no subject
Date: 2023-03-10 09:45 pm (UTC)no subject
Date: 2023-03-13 05:26 pm (UTC)Hugs and sympathy from a (sadly useless) distance.
no subject
Date: 2023-03-18 01:04 am (UTC)no subject
Date: 2023-03-19 01:32 pm (UTC)