I thought I'd be posting here more often than I have. Kind of sad. I have been posting what's been happening medically on Facebook. People seem to like that. Maybe I'll get back to posting here on a regular basis soon.
I can't believe it's almost Rosh Hashanah (lit. Head of the Year) or our New Year. It's also the start of the High Holy Days. That lasts for 10 days and ends with Yom Kippur (or Day of Atonement). Rosh Hashanah is at the beginning of the next Jewish month of Tishri. During Elul, it's a time of introspection and asking for forgiveness. There are some traditions people do during it. For instance, we blow the shofar each morning during the month. It's like waking our souls up to be prepared for the High Holy Days. I finally did that yesterday morning. I had been meaning to when the month started. I'm surprised I managed to get a sound out. I also get nervous doing it when someone else is home, and especially if they have work meetings on zoom like my parent did at the same time. Hopefully, I didn't disrupt it too much. Although, she didn't say anything.
Had the radical hysterectomy on July 24th. I wasn't expecting it to be so soon after seeing the surgeon. They took out pretty much everything in there. It was done by a robot. Only did 4 small incisions. Biggest one was in my belly button. I actually can't see that one. It was for both the light and camera. If I look in the mirror, I can see 3 of them. I think they have dissolvable stitches. Parts of them are dropping off, so I'm assuming that's normal. No one's said anything about taking them out.
I did stay the night at the hospital. It wasn't really connected to the hospital, but apart of the surgical building. The room looked like a cramped storage closet, and I wasn't too happy about it. As they wheeled me into it, I had horrible leg cramps. In order to keep those to a minimum, I tried to have the bed turn into a chair as much as possible. I think that helped. The nurse was nice, but a little too talkative. The food wasn't great. I know some people have told me that anesthesia can affect the taste of things, but I could tell and I don't think it was reacting in that way. The TV was on almost the entire time, and it seemed like an ambiance channel. At night, it was going through space, and during the day it showed things like waterfalls, horses, rocks, mountains, etc. Nice to look at occasionally.
I also had issues with it being a Catholic hospital. Almost all the hospitals near me are Catholic, which scares me. I don't really have a choice in it. I'd prefer one not affiliated with any religion, but especially not with that one. They can turn away LGBTQ+ people, for one thing. Prayers over the intercom every so often is isolating (not sure if that's the right word...) and unwelcoming. There are a lot of other reasons why it's scary to me. Even with me just being Jewish.
They kept me up most of the night. They wanted me up and walking almost immediately. I didn't know they'd put a catheter in. It was my first time having one. The nurse said it wouldn't hurt when she was about to take it out. It did hurt. It also hurt to go to the bathroom for a little while after that. I didn't like that none of the people that did the surgery told me anything afterwards. One of them was going to early the next morning, but I finally was asleep and he didn't want to wake me. I would have been more than fine to be woken up for that. More so than the blood draws they kept doing. They told my parent at least, but I like hearing it from the actual people, too. I was discharged from the hospital earlier than expected. The morning after. I don't think it was the best time.
I had a follow-up appointment with the surgeon's nurse a couple of weeks later. She told me more in-depth stuff. They didn't see any lesions or signs of the cancer in what they took out. I still don't know if the cancer they found in the vulvar biopsy is related to the skin, vulva specifically, or reproductive tract. I might ask my gynecologist that soon. Good to know it hadn't affected further up my reproductive tract. They were worried they'd find lesions that would make it difficult to basically scoop that stuff out. That they'd be fused to certain parts. Since it wasn't, it made it more simple. Still, it was a 3-hour surgery.
I had really horrible constipation and swelling in my feet and ankles after. I thought I'd never clear the constipation, and what finally did help was a suppository. I'm not used to them, and was reluctant to try it. Still have issues with it, but it's much better. I'm now taking 3 stool softener pills 3 times a day (up from 2 pills 3 times a day), which again has helped.
The swelling seemed even scarier. My feet were huge. Couldn't even fit into my slippers. Socks wouldn't fit either. So, I ended up feeling really cold, and that made the pain worse. It was like a sunburn type of pain. They were so swollen, they changed shape. Looked like I bound my feet, huge arches, toes sticking straight out, almost transparent on top, birthmarks moved and stretched, etc. It was bad. Could barely walk or stand up. Eventually, I tried a diuretic. It worked well, but slowly. Now my feet look pretty much back to normal, but my left ankle is still pretty swollen. Right ankle isn't as bad, but still has some. I can fit into my socks and shoes now. Yay! So much better. The nurse I talked to said it's normal to have constipation and swelling after surgery like that. They pump you full of fluids during the procedure, and that can get stuck in your system. Also, they worked near the lymphatic system. They didn't touch it, but it still can get irritated and cause swelling. That kind of swelling has to convert itself from lymphatic fluid to water and blood, which takes a while. Thus, probably why my ankles are taking so long to get back to normal. This makes me nervous for future surgeries. We'll be more prepared, though. I might have top surgery next. I would have thought they'd want to do that first, because the cancer started there. Maybe this was easier to do.
I decided to join 3 metastatic breast cancer Facebook groups. I was reluctant to for a while. I wanted ones that were specifically for mbc, not just the bc. There's kind of a rift and different attitudes between them. One of the groups is a 45 years old and under group. Only saw one that was like that. So many groups have people that are much older. It can be harder to relate. I already get the 'you're too young to have that' thing. I can't help it. Not that I wanted this. It's a different perspective with my age group. I was surprised by the responses from all 3 groups with my intro post. I'm still getting reactions and comments from the biggest one. That has over 100 reactions. First time I've had that many on a post. Also, made 3 fb friends through those groups. All of them live near me. Yay! Maybe I can meet them someday.
I was a bit reluctant to join these groups mainly because I thought it'd be too depressing or something. I've liked seeing how some people have lived with it for many years, though. Some have had it for 20 years, and that gives a little hope that maybe I can live for a while with this. The statistics aren't great for how long people can live with it. 27% are likely to live 5 years after diagnosis. 11% after 10 years. With that, it's a bit disconcerting. I want to live for as long as I can. Certainly longer than 10 years from now. Again, that's why it's been nice to see so many people mention in these groups that they've lived much longer than 10 years with it. They also say those stats are old. Medicine has really advanced since then, so the stats might be better now. The other side is you have to be continuously going through some occasionally tough treatment in order to survive. It's difficult. Everyone's case is different, too. Not all of us have the same type of breast cancer, same areas where it's spread, if it's hormone based, etc. Lots of factors come into play. I like that it's being treated more like a chronic illness. It's a little easier to deal with that way.
Tomorrow, I have my eye exam. Haven't had one in around 2 years. My current prescription for contacts certainly isn't the right one. Things don't show up totally clear. Lines blur into each other sometimes. This will be the first time I went to Costco for the exam itself. We normally would go to Sears Optical, but they're not there anymore. Hopefully, they're good there. I'm actually covered as a dependent for vision this time. Haven't been covered for that for over a decade. That should be good. I can order the new prescription while I'm there, too. I've read that cancer can affect the eyes, so hopefully mine hasn't been messed with too much. Hopefully, they'll have samples of the new prescription I can use while I wait for the ones I order.
I might also have a blood draw after that. My oncology pharmacist wants to run some labs after every 2nd week of a cycle of Ibrance. They have to make sure things are ok before agreeing to the next cycle of it. I'm supposed to take it for 3 weeks, then go off of it for a week. Then, start it over. I have to have a phone appointment either with her or the specialty pharmacy before every cycle of it. It'll be interesting to see how things are.
My oncologist is still reluctant to start me on zometa. Zometa is a bone-strengthening infusion. I've read that you go to an infusion clinic every couple of months, and sit there with it going through an IV for 15 minutes. Pretty quick. My oncologist is worried I'll catch covid while I'm there. So, I'm being denied it because of the virus. I really need something like that.
He also wants me to get a full bone scan. That way we can compare it to the one back in April. I hope it's improved since then. Not sure what will happen if it's worse.
He wants me to switch to arimidex instead of tamoxifen soon. I decided to switch when I run out of the tamoxifen. I have the arimidex already, but I think it can wait. Both are kind of like supplements to Ibrance. They work with hormones, so they're good for people who are hormone positive. I'm positive for all 3 hormones. Arimidex is usually suggested after people have had hysterectomies or are going through menopause. It's supposed to be stronger, too. I'm nervous about that. I've got maybe another week or 2 before I finish the tamoxifen.
I decided to cancel the My Thrill Club monthly subscription box. It's the one where they give you 2 hard cover books that are in the horror, mystery, and/or thriller genres each month. I got the surprise me one. They give you a mix with that one. I love those genres. Anyways, the books are super thick. I thought I could challenge myself with reading both books within each month, and starting again with the next batch. Since my contacts aren't great right now, it's hard to read for a certain amount of time. I couldn't keep up. I already have 4 books from them, and only have read about 1/4 of one of them. They've already shipped another 2, so I'll have 6 soon. Too much. Fallen too far behind to start up my challenge again. Even if I get a much better prescription soon. At least, I'll be able to read more. I think with 6 of them, I could rotate them each day. I was going to slog through one book at a time, but it might be more interesting to switch it up like that. Each day would be a different book. I want to read all 4 so far, because they sound really interesting. The Gold Rush fantasy type one looks almost as thick as a dictionary, though...That'll probably take a while. I didn't particularly care for the sex scene in the one I've been reading, but the rest of it is interesting. I want to know what actually happened to that missing friend of the main character. There's also a Sherlock Holmes book by Kareem Abdul-Jabbar. That should be fun. The last one seems like a horror one about a possessed typewriter, I think. Intriguing stuff. I don't know what the next 2 will be yet. I could start it up again after I read all 6 books. That'll take me a while, though. I want it to take me some time. Good way to preoccupy myself.
I found another monthly subscription thing to replace it for now. It's called Arts in Letters. You get letters from famous artists, scientists, musicians, etc. in the past. They're real letters in their handwriting. They come with info on the person and what was going on at the time and around them. Very interesting and fun sounding. I can read letters and the info quickly, so I thought that would be best to replace it. You get a letter a week, which seems more fun than one thing once a month. There's another one that interested me that I could try in the future called Matter. With that one, it's an adult science-based thing. You get artifacts like animal bones and they go in depth with info on everything. I like that sort of thing. Maybe if I get tired of the letters or Try Treats.
This month's Try Treats is on Ireland. I feel like they cheapened this one. I get the premium version, which is supposed to have 10 or more snacks. Ended up with around 7 of them. The standard is 5 or more. Plus, 2 of them are Japanese. They were actually stuffed on top of the tissue paper that held the Irish stuff inside. Weird. Maybe they don't think there are many good Irish snacks? Sad. The recipe this time was Irish coddle. Sounded good, and I can turn it 'kosher', so I can eat it if I wanted to. I can look for beef or turkey sausage, and same with the bacon. I tried the 2 potato chips. They were the same flavor (cheese and onion), just different brands. Tasted pretty much the same. I prefer kettle chips, but they were better than our regular chips. They seemed denser and slightly thicker. Mostly tasted the onion for both. There's a candy bar by Cadbury. I've had Cadbury chocolates before and liked them, so it's probably good, too. There's a huge thing of custard sandwich cookies. Those look interesting. There's a bag called twiglets. Don't know much about those. Both Japanese things are sweet and sour candies. One sounds like pop rocks, the other almost like long flat taffy. Both are cola flavored. I like sweet and sour things, so they might be really good.
The downstairs' toilet is off limits again. After my parent did an enzyme thing with it, it was fine for a while. That toilet has always had issues. It overflows super easily. At some point, we really need to have a plumber look at it. In the meantime, I'm stuck with going up and down the stairs to use my bathroom toilet. That's a falling hazard. Not good when you feel like your bones are made of glass. I can easily break them. My toilet upstairs is great, and works well, but the stairs make it dangerous. I still do all my other bathroom stuff (brush my teeth, take out and put in contacts, etc.) downstairs. I almost feel like I'm camping down there. I still sleep on the hospital bed in the living room, instead of my room upstairs. I might not ever be able to sleep in my actual room again.
