Wanted to update this more than once a month...I'm getting better overall health-wise, so this might change. The last couple of weeks have been pretty busy. I had an orthopedist appointment. He said my arm is really healing well. I can try using it for as many as things as I can, carefully. I've been doing that without thinking at times. He said, since I haven't started physical therapy yet, it's stiffer than it normally would be. He recommended I do a stretch that will help with more flexibility and moving it up higher. It's already gotten better with that. I'm getting more feeling around the incision area, which is both good and weird. He wants me to focus more on my cancer treatment than on my arm. I told him that I plan to have a physical therapist work with me after I have the hysterectomy. Thought it'd be a good way to recover from that, too. He agreed.
I had a 'procedure' where I was put under anesthesia to get my IUD out, pap smear, check my uterus, and get a lupron shot. I wasn't told not to eat, so I had a tiny breakfast at around 8:30am. Check-in was 12:30pm. They told me I couldn't do it until 3pm, because of the food. If they had to do this, I would have thought 1pm at the latest. 3pm rolls around, and they try to get the IV in. Took until 4pm. (Only way they got it in was with an ultrasound.) They decided to put 2 people in my slot, and it ended up being around 6pm when they finally took me back to it. It was absurd! A whole day just sitting there. I couldn't even access my phone. They saw a suspicious area and took a biopsy along with everything else. I was really sore and angry by the time we got home, which was 9pm. At least, I had a nice gyro with fries at It's Greek to Me right before heading home. (Besides that small breakfast, I didn't have much else that day.) Still...didn't make up for it.
Had an esophagram the next day. I was expecting the day to go haywire like the one before, but everything went pretty smoothly. It was about a 30 minute exam. The only issue I had was being called a lady so often when I was first taken to their locker room area. I didn't tell them I was agender, since I didn't want to go through a big thing of it. Simply wanted to get it over with. They gave me something that had a similar reaction as pop rocks in order to expand my digestive tract with gas to observe it better. They told me to be careful with not burping it all out. That was difficult. This was a more detailed type of exam than the swallow one I had a year ago. This time there wasn't a food aspect. There was a very thick version of barium they had me drink standing up. Then, a thin one laying down on my belly on the table. They watched the reactions through a fluoroscope, which is like something that takes x-rays so quickly, it turns it into a movie. They can watch in real-time this way. Similar to the other exam, but this is more detailed in its view. They tried moving me around to get 'evidence' of the LPR or silent GERD. It was interesting. They didn't tell me what they saw afterwards this time.
The next day or 2, I started to feel sick. Thinking I was still sore from what my gynecologist did to me, I ignored it for a little while. By the night of June 15th, I was starting to get a really scary symptom. I would suddenly get cold, then my body would shiver violently for like 20 minutes at a time. So violently, my back and neck kept tensing up badly, causing a lot of pain. The following night was the last straw, with having longer waves at a time of that symptom. I went to Urgent Care that Wednesday morning. My nurse navigator had told me that it sounded like an infection and that I was going through shock with the shivering. They ran some tests, hooked me up to an IV (took a while to get) with antibiotics and fluids, and monitored me. I even had that shivering happen while I was being given the antibiotics. They couldn't do much for that. At one point, the doctor prescribed a little dilauded. She said sometimes that can calm patients down, even if it's not pain related. Sure enough, it did help with the shivering. It eventually stopped. Never came back after that. Thank goodness. It was an awful feeling that I couldn't control. They prescribed a huge amount of cefdinir, and sent me on my way. Oh, they also found out that I had a fractured vertebrae, a fracture in one of my left ribs, and another old fracture (I was told about it a few months ago) in one of my right ribs. A vertebrae fracture can be a bit difficult to heal from. The doctor prescribed a special back brace for it. At least, it will have support whenever I move around.
The next day, I was told to go back to Urgent Care for another antibiotic infusion. They were worried because one of the tests indicated that the bacteria was in my blood. I never got this test result myself. I did get one for my lactic acid. That was normal. If it were high, I'd be septic or in shock. We didn't know what type of culture the bacteria was at the time. So, I'd be blasted with more antibiotics that may or may not be what I needed. I know what it's like to have too much of that in my system. It can actually kill people. I was already still taking the antibiotics I was given, and improving quickly. So, I refused to go back. I also didn't want to sit there for hours on end again. My nurse navigator tried to convince me for an hour to go. She didn't seem to be listening to a word I was saying. Normally, she's very understanding. She kept saying things like: "You're breaking my heart!" "You are so young!" "You could die!" It was really over-the-top. Put me in a not so great mindset. I almost thought of trying to get a new nurse navigator after that, but I wouldn't know where to begin, or how many are even available. I'm just putting it to her caring a little too much, she's been great with everything else, and she acted totally different the next time I talked to her.
The culture turned out to be E. Coli, which is common. Turns out the antibiotics I was prescribed are like 8 times more potent against that than something like keflex. I was already on the right type of antibiotic. No wonder I've been getting better so quickly. I stopped having any symptoms of the uti after a few days of being on it. Pretty good. I still have to finish all of the antibiotic. They gave me 10 days worth. (It'll end on Saturday, I think.) The only problem with this is I can't take my chemo, Ibrance, until I finish it. Without the chemo, some of my bone pain has come back on top of the newer pain of the fractured vertebrae. Wahoo! It turns out I can't do the urine test until it's been a week after I finish the antibiotic, and once I get the culture back from that I can get back to my chemo. So, a week later than expected. I've increased my morphine to 3 pills a day starting today, instead of 2. They already prescribed it as 2 or 3 pills, but I wanted to be conservative with it. This way it can be flexible, too. Once I'm back on the chemo and feeling better, I might go back down to 2. I was feeling so much better until this uti happened. I highly suspect that what they did to me during the 'procedure' caused that uti. Another thing to be angry about that day. Not much I can do about it.
Found out through that biopsy that the breast cancer has spread to that area, too. So, it's not only in my bones, but possibly skin and/or areas of my reproductive tract. I'm a little more worried about that. Depending on how deep the cancer is in that area, my hysterectomy is going to be more drastic, or I think they call it radical, than what it would have been if there weren't any signs of it. It means a more invasive, tougher, and longer surgery. Longer hospital stay, too. The 'look' will be even more brutal right after. We still don't know when surgery will be. It'll be done by someone else, thank goodness. This will be an oncology gynecologist. Sounds like they'll know even more of what they're doing. My current gynecologist doesn't specialize in oncology and is new to working cases. She at least knows this is out of her league, and is trying to help me. That other oncologist hasn't responded to her yet about surgery, even though she's been trying to for a couple of weeks now. We'll see how that goes. It's even more up in the air with timing now that I had to stop Ibrance for a while. I have to have that timed with the surgery a certain way.
Apparently, in one of the x-rays they ran at Urgent Care, they also found out that I had a little of the barium from the esophagram exam still in my colon. This was 5 days after the exam. It's not normal for it to still be in someone's system that long. It normally leaves pretty quickly. It's not like I was stopped up or anything either. The initial interpretation did come back, too. The only thing they could see was esophageal dysmotility. Basically, my esophagus wasn't moving the way it should. That explains the dysphagia. There were no signs of the acid indicating LPR or the silent GERD. To me, that adds another mystery to it. If it's not that, then what's happening? There must be a reason behind it not moving right, too.
I did have a phone appointment with the ENT doc about this today. It was one of the shortest phone appointments I've had. He said just because there was no sign of acid or the LPR, it doesn't mean I don't have it. The x-ray isn't sensitive enough, according to him. He said I should give omeprazole a shot again. The only problem I have with it is I have to take it at least 30 minutes before I eat. He wants me to have it twice a day, too. In the past, I just had it once a day, and tried to take it before my bathroom stuff in the morning. Even then, I sometimes had to wait a little bit before even making my breakfast. Maybe I shouldn't care much, and just take it before making 2 of my meals. At least there would be some time between taking it and eating. He wants me to follow-up occasionally with my primary doc about the dysphagia. He also said it'd be best if I was working with a gastroenterologist for this, especially because of the colitis. I can have a speech therapist help me with the dysphagia through the palliative home care program. My nurse in it suggested that, too. That way they can monitor, give me tips, suggest exercises, etc. for the dysphagia and it will be from the comfort of home.
I did finally see the palliative home care physical therapist a couple of days ago. It was an in-person home appointment, which I haven't had many of. That was a longer appointment than expected. My palliative care nurse thought she'd order the brace for my fractured vertebrae and do a fitting while she was there. She didn't. She didn't even have the prescription. Seemed a bit suspicious that way. She did show me pics of it, how I'd probably need to put it on, and general info on it. It seems like it's going to limit quite a bit of my movement. I most likely will need help getting in and out of it every time. Although, she did suggest asking the place I get it from if there might be something easier. Something I could get into on my own. I really don't want another thing to have to rely on someone else to do. She said I should put the brace on every time I think I'll be active. I think I'll want to be most of the time...She told me to try not to do too much of the BLTs: bending, lifting, and twisting. Especially when it comes to my spine. I can easily break more vertebrae this way. It's hard to remember that. Last night I dropped a few pills on the floor, and proceeded to immediately bend over low to get them. I heard massive cracking sounds down my spine. Not good. She also wants me to be careful with getting in and out of bed. It's hard to not move your spine much with that. I try to normally, but I still end up needing to sit up and twist over to get out of the hospital bed. She agreed that I'd start physical therapy after the hysterectomy, and thought it was a smart way to go about it. She checked to see my leg strength, and was surprised that that's still pretty good. She looked at how I walked without the cane. I'm a little wonky/slightly unstable. She said the cane was another great idea for me, and liked that it was mainly to stabilize me. Make sure I don't experience another fall.
I had another in-person home appointment yesterday with my palliative care nurse. As my nurse, he has to recertify me every 6 weeks. He can only do that with actually seeing me face-to-face. Interesting to have a similar appointment so close to the other. He agreed with the idea of me taking 3 pills of the morphine instead of 2, and that it makes it easy. Shouldn't be a problem. My cane is splitting down the foam handle. Makes it a bit more difficult to use comfortably, so I asked him about them replacing it. He said the best thing for that would be to order it on Amazon. There's a wider variety of models, and I can get something I'd actually like. I suppose it would be better. I just thought they could give me another one. We ended up talking a lot about music in general and music theory. He said he never got the chance to talk to someone like a musician that has some knowledge on it. That was interesting and somewhat fun to geek out with him.
After that, my parent and I went to Elmer's for dinner. It had reopened a couple of days beforehand. It was the first time since March that we've been to a sit-down restaurant like that. Like many people. However, I might not have been able to go until now anyways even without the pandemic. It was interesting. There weren't very many customers at the time, which is understandable. I got one of my faves: their roasted turkey dinner. (I got the lighter serving.) It comes with soup or salad. I love their salad, but raw vegetables still cause issues for my gut. So, I got their new pot roast tomato soup. It was great, except for the corn. Luckily, not much of it, but it's also a trigger food. Huge pieces of potatoes and beef, which made it better. That came with garlic bread. The turkey dinner also has turkey gravy, mashed potatoes, stuffing, seasonal vegetables, and cranberry sauce. The seasonal vegetables for a while (before March) were a medley with squash, and I had to choose something else to replace it. Now it's carrots and broccoli. Perfect, and nicely cooked with a little bit of butter. Next time, I'll try their brunch stuff again. They're more known for that. It was nice to eat someplace different for once.
I got a pill organizer yesterday. Ordered it from Amazon, and it came much faster than expected. It has 5 compartments to every day of the week. I take them 5 times a day, so that's super handy. They come in a nice looking carrying case. When closed up it's like a fancy thick looking planner. Might be nice if I travel with it. The compartments are huge, and plenty big enough for everything. Figured out I take roughly 15 different meds. Some repeat during the day. It was starting to get harder to keep track of. I did use the Notes app on my phone, but seemed like a hassle each time. This way I only have to figure it out once each week. Might be easier to figure out how long I have until I run out of them, too. I've already figured it out for the next week. It's been interesting and less time-consuming to not have to figure it out each time today. Definitely will make life easier.
I got the Try Treats monthly subscription box finally about midway through the month. This first one was on Turkey. It had about 10 snacks. I got the premium version, which is supposed to have more than 8. Wish more of them were big enough to share. Basically the only ones that were was the assorted cookie one and milk chocolate squares. The cookies were like those Danish butter cookies we sometimes get, only more intense and smaller. The chocolate was ok. I think I liked the Halley biscuit, Albeni, and Dido wafer the most. The pizza sticks were probably my least fave, but were ok. They were interesting with the added mint flavor. It also came with a postcard of a big city, info card, and a recipe for baklava. It was kind of fun. Should be interesting to see what the next country will be. Hopefully, I can still have most of them.
I'm still waiting for the Thrill Club one. They'll send me 2 hardcover books and an ebook that are in the mystery, horror, or thriller genres each month. I decided to get the 'surprise me' option, hence not a specific one. I don't know if there's a certain theme to them each month. It sounds fun, and a nice challenge for me to read all of them within the month. It's kind of like my own little book club. Maybe my parent will be interested in it, too. Not sure how the ebook part will go. Maybe they send a link or something. They also have been featured through Oprah's magazine, so that might be a good sign. I might finally get it by tomorrow.
I managed to play my clarinet recently. Thought I wouldn't get much out other than a couple of notes. Mainly because I can't circular breathe, and breathing in general has been different. It wasn't the best, but I could recognize the tunes. I played klezmer. Klezmer seems to come the easiest to me. Plus, there's some improv/solo stuff I can take advantage of with it. I hadn't played in roughly a year. Felt nice and soulful. Hopefully, I can get back to it on a regular basis soon.
Got half of one of my walks in recently, too. Probably was too long of one, considering I was starting to get the uti at the time. Despite that, it was really nice to get out there, hear the birds, greet neighbors, see the cats, see the mountains, look at the flowers, and more. I didn't particularly like that a neighbor cheered me on from her car as I crossed the street. Yelling you go, girl over and over. I'm not a girl, and all I was doing was walking. Not something like a marathon. If I was struggling, it still seemed like she was either rushing me, or really weird. I still felt good after getting out there.
Youtube (It's been a while, and I haven't really been watching much lately, but why not share what I haven't yet on here):
Dr. Stone:
Kimetsu no Yaiba (Demon Slayer):
Zombieland Saga:
Jibaku Shounen Hanako-kun (Toilet-Bound Hanako-kun):
One Piece:
Boku no (My) Hero Academia:
