It's been a long time since I lasted posted here. Didn't want it to be this long between posts. Hopefully, I'll get to posting more often. I've been posting a lot to places like Facebook, Tumblr, and PatientsLikeMe. They've kind of become more of a way for people to know what's going on with me. It's a bit more difficult to post on here, because I can only really do it through my desktop. There isn't an app for this. At least, not a reliable one. I haven't really used my computer in a while, either. Trying to stay downstairs as much as I can, and my computer's upstairs in my room. My room doesn't even feel like my room anymore. It's odd that I now sleep downstairs in the family room with a hospital bed in the middle of it. They want me to avoid upstairs as much as possible because of my bone mets, and it's easier to break a bone if I fall. I miss being up here, though.
Yesterday marked the anniversary of when I was diagnosed with metastatic breast cancer. It's crazy that it's been a year. Feels like longer. A lot has happened. At least, I can look at it like I survived a year. Many people don't make it past 5 years after diagnosis. I hope I can make it that long, and surpass it by a lot. I want to live for as long as I can. Hopefully, my quality of life will still be relatively good for a long time.
I didn't do Passover this year. That's twice in a row of not doing it. Last year I was recovering from falling in the shower and breaking my right shoulder, and I had just learned about having cancer. I think it was later that year. That's another thing. It kind of crept up on me this year. Last month was rather expensive, and I didn't want to add on to it. I also was just not feeling it this year. Even a month beforehand, when I usually try to start getting the food for it, it just didn't feel right. I'm hoping next year I can feel up to it. If I do it early enough, I can find everything I need for the holiday and not worry about cooking much during it. I've felt so fatigued that it's hard for me to do things like cook. That holiday is very cooking-centric. However, like I mentioned, if it's early enough, I can get most of it already prepared online. No need to make my own things like cereal that way. It's one of my fave holidays.
Kind of along the same line, I recently started Duolingo's Yiddish course. It just came out a few days ago. Feels like another way to connect with my ancestors who spoke it. It's interesting that I tried their Scottish Gaelic course when it came out, too. Some of my other ancestors spoke that. There aren't many speakers of either language today. There might be more who speak Yiddish than Scottish Gaelic today. People are trying to change that with both languages, though. I think that's awesome! It was interesting that on the day Yiddish went live, Duolingo had a thing where if you order a bagel in Yiddish at participating stores, you'd get it for free. I wish they had one that was local to me. I could have tried it. So far, I'm doing pretty well with it. Only missed a few questions/sentences out of 7 units, and leveling out 4 of those. (There are 5 levels with around 5 lessons for each unit.) With most of them, I've gotten perfect scores. I started out on the totally new to it trek. They start you off with the letters that way. They added in actual words and sentences earlier than I expected. It would have been even greater if they also had speaking exercises. I know it's still in beta, but hopefully they can add that in the future. I'm just happy I get to be exposed a bit more to it. My plan for Duolingo before is going to be put on hold until I finish their Yiddish course. I've wanted to do this for a while. The plan before was with every new Treats monthly subscription box, change to the language that that country speaks. So, if it's something like India, start learning Hindi. I thought that would be a great way to learn languages, and learn more about the country they feature. I did that last month when it was on India. Hindi was very interesting, but I don't think their course for it was even as good as their Yiddish course so far. The month before that I tried Bahasa Indonesia on there. Even though it was Malaysian snacks that time, I couldn't find any good Bahasa Malaysia apps and it wasn't on Duolingo. Bahasa Indonesia is supposed to be similar, so I went with that. Before that, I was trying to do Welsh. Got really tired of it quickly. Hopefully, I can stick with Yiddish all the way to the end of the course, and keep it up every day.
I went to the dentist for the first time in roughly 15 years recently. I finally got dental insurance last year, and just hadn't gone yet. My oncologist really wanted me to go before I started xgeva. Xgeva's a bone strengthening med. It's like zometa, only not an infusion. This one's in shot form. She thinks it'll be better for me after I ended up feeling really sick with the first zometa infusion. Anyways, both these meds can cause dental problems. One of those being jaw necrosis. They don't want me to go through major dental procedures while on it. The dentist poked around and looked at x-rays of my teeth that first visit. He said the only problem he saw was that I had cavities. 7 of them. So, I'll need 7 fillings. Not major dental stuff, so he ok'd me taking xgeva, and sent a fax to my oncologist. The next time I saw him he did a deep cleaning. It was painful at times. He prescribed a toothpaste and mouth rinse afterwards. I read that they help with preventing more cavities, remineralizes, and helps to prevent worsening of gingivitis. That's kind of good. I'm only supposed to use the mouth rinse for 10 days. The toothpaste has an odd flavor. It says it's fruit-flavored, but tastes like bubble gum. I'd prefer to get back to my other toothpaste in the future. That one has a better flavor and is for sensitive teeth. My teeth have always been sensitive. Even when they were super healthy. The insurance didn't cover those prescriptions, but they weren't as expensive as I expected. So that was a plus. The next time I'll see him he'll do a 'tissue check'. Not sure what that entails. Then, he'll get to doing 2 of the fillings. The only problem I have with this dental place is they continue to call and text my parent about my appointments. They're not contacting me. I wrote my phone number on the intake form. They somehow got my number before I gave it to them, since they called while I was filling it out. I brought this up to them at the end of my appointment last time, and specifically said call or text me, not my parent. They started to say they didn't have it. I brought up that it's on the intake form, and said my number again for them. My parent got a text reminder of my next appointment that night. The next time they text her, I'll call them about it. It's kind of ridiculous. I don't know why they're contacting her and not me. It feels like maybe they're afraid or something? I didn't answer that time they called me because I had so much stuff on my lap and I was in the midst of finishing that form. So weird.
We recently found out that Rosie, our cat, has diabetes. My parent was giving her insulin for a while. The insulin was human and pretty expensive. One little bottle is $300, but that's supposed to last 6 months. It still is a lot. We also changed her food to a higher protein one that needs a prescription. Tasha, our other cat, loves that stuff, too. We were told last Monday that she may have beaten her diabetes. It might have gone into remission. That way she might not need insulin anymore. The food might be enough for now. Her readings for the glucose monitor were much lower than before. They monitored her at the vet clinic for a day. That'll be great if she doesn't need the shots anymore.
On Monday, I had a CT and full bone scan done. It was an exhausting day. They took forever to get the IV in. I came close to passing out at one point. They told me last time that I should make an appointment just beforehand with one of the people from the infusion center. That way they can use an ultrasound to find a vein quickly. I thought I'd be fine this time. Plus, I couldn't find the card of the person I was supposed to call. I shouldn't have to make another appointment for before it either. They gave me a card of another person from the infusion center for next time. Hopefully, I'll remember. I have to have them done every 3 months. The results came back really quickly. They seem great, except for 2 things in the findings section of the CT scan. That being a small fat-containing umbilical hernia, and focal fluid collections or masses. I'll bring that up with my oncologist the next time I see her. Like I said, the rest of it looked great. Even the bone scan is stable. There's no progression, but there's also no shrinkage or anything disappearing. My lungs are clear now, too. They saw a lung nodule last time that they were worried about. They suspected that it was a met, and now they're not sure. It's gone now at least.
Home Health stopped having their aides come by to give me a shower. It was right after my home aide had quit, and my palliative care nurse had just gotten back from vacation. It shocked him, and he said it made him stammer. I think the way it was done wasn't right. I didn't like them in the first place, and wanted to be able to do it on my own for a while. They didn't give me any 'tools' to try it on my own beforehand. One home aide suggested I buy a long shower brush. I can't reach my back, neck, upper left arm, and anything from the knee down on my own without any tools. That's still quite a lot. I wasn't able to get the brush before they stopped coming to see if it would actually help me. It would have been best to have at least one more time of them coming by, seeing how I handle a brush, and maybe tell me some tips on how to better use it. That would have been much better. I like how the manager told me I can get back into the program whenever I need them. Well, I needed them right then. I have been able to do it on my own with the brush since then. It really wears me out, though.
I decided to stop getting the Arts in Letters monthly subscription. They were very interesting, but I just couldn't keep up with them after a while. I love the idea of them, too. I hope the person behind it can keep it up. I looked up other monthly subscription boxes to replace it. I decided on Celebrate States. This is a very interesting one. I love learning about states. Each box comes with a ton of info on it, and quite a lot of items. Each one is personalized according to what you filled out on the quiz just before ordering it. Since I said I had cats, there was a cat toy in the first box. I don't know if every box will have something cat-related, but that's nice. You had a choice of either Florida or North Carolina for the first box. I chose Florida. There was a nice smelling candle, homemade soap, honey, teas, gum, a shell, goat's milk lotion, a rub for meat, and more. It had more things in it than I was expecting. I think the next state is California, since they mentioned it on their Facebook page. After the first month, it's a mystery as to what the next state will be. I also virtually visited places that sounded interesting, which I found in the guidebook and magazines that came with it. I might do the same thing with future states. Gives me something to do, at least.
A friend sent me a box filled with things. It was essentially a care package to help keep me preoccupied. I didn't expect to get something like that. There's certainly a lot to it. There's a ton of chocolate, a drawing book, an art book, coloring books, fun socks, teas, colored pencils, markers, a candle (Peruvian lime scented), ramen, a cat treat, a huge jigsaw puzzle featuring birds, and more. It was very nice of them. The only problem was finding places for everything. I really appreciated it, though. Apparently, another friend is going to send me something, too. That being Girl Scout cookies and gift cards. They don't have to send me these things, but it's all so nice and sweet of both of them.
I tried to get into my regular clothes recently. I normally wear my pajamas. Even when I go out. Found out I lost weight everywhere but the area they did my hysterectomy in. My shirt was baggier than the last time I wore it. My jeans were baggy except for the top, where I couldn't zip it up. I just hope I don't get something like my mom did. She had 2 abdominal tumors. She lost weight at the time, the first tumor was detected, everywhere but her belly. This is different, though. Maybe that hernia has something to do with it, too. I think it has to do with how the area has healed since the hysterectomy. It's made more of a pooch. If I want to try wearing jeans now I need to get a bigger sized pair. It's weird that the legs of those jeans will be super baggy that way. I've managed for the couple days lately, that I wanted to wear regular clothes, to wear a shirt, pajama bottoms, and regular socks. It's better than before, I guess.
At some point, I want to get back to my walks. This week might be best for that. It's going to get up to and around 70 degrees at some point. That's going to be nice. It's been so cold still. The fleece/sherpa blend blanket I got not long ago has really helped at night. If I start doing my walks when it's nice out, I might be more likely to keep it up. We'll see. I hope to eat closer to what I used to, as well. It's a little difficult with having the to-go meals for dinners, and all that chocolate. However, I could halve some of those dinners. With the chocolate, I'm trying to just have one serving at a time. Even with that, it adds quite a few calories. I'm trying to also give myself a break sometimes. Keeping my 'splurge' days would be good. Those being Friday night through Sunday. My palliative care nurse said I really shouldn't care too much about eating healthier. Just do what I can, but with my situation, it's ok to indulge more with things. I want to feel healthier, though.
I want to get back to watching things, too. It took me a while to get through the last 2 things I finished through Netflix. I'm almost done with The School Nurse Files. I think there's only one more episode left. Hopefully, I can finish that soon. The next show on my list is Betaal, which is a short Indian zombie show. The School Nurse Files is a supernatural Korean one. It's kind of eccentric. I think it was based on a manhwa or Korean comic. It's a bit surreal as a live-action show. I also want to get back into watching anime. I've been somewhat catching up again with One Piece, but I've pretty much stopped watching other things. I'm about a year behind on anime I'd like to watch. That's quite a lot. Plus, during this season, there are a ton of shows that I love that started their next season. It feels weird to be so far behind. Hopefully, I'll get into it again.
