27th of Cheshvan

It’s been a long time since my last post. I hardly ever go on my computer, and I could only blog through that before. It looks like Blogger now supports smartphones. I don’t think they have an app still, but I’m using Chrome for it. We’ll see how this goes. If it works out well, I can try to get into blogging again. Yay! I’ve been posting a lot about my health stuff on facebook. It’s kind of turned into a health blog that way. I also updated some of the lists on here. It was a little more difficult to do than on my computer, because of the order I put things in. For instance, I like to have the most recent show I finished at the top in my Netflix list. It likes to put the most recent entry at the bottom. Takes a little more time. Oh well. 

I’m not sure if I mentioned this, but I had tried out the Celebrate States monthly subscription for a while. That was kind of fun. Each month they send you stuff from a certain state. Each state’s a mystery until close to that month. They reveal it kind of early on facebook, but if you’re not following that, you don’t know. With each state they featured I tried to ‘virtually’ visit it. I’m a little behind on that, but it’s fun. I’m going through Texas right now. 

Anyways, they sometimes sent things like brochures/magazines, coloring pages with the state flag/flower/etc., and a map of what it produces and the counties. Interesting stuff. For my ‘visits’ I used those brochures/magazines and Atlas Obscura online. Now, it’s mainly Atlas Obscura. They have interesting places. 

Since I filled out a questionnaire saying I have cats, they would send a cat toy occasionally. That was nice. Some of the items were interesting. I got candles and soaps often. My parent thought the Syracuse black garlic salt was a good find, and might get more of that. I liked some of the tea it had. I don’t regret trying it out, however it started losing it’s value for me with the last few boxes. Seemed like we weren’t getting as much, items weren’t as good, and they stopped putting cat toys in it. The coloring pages were too kid-like, too. 

So, I decided to stop getting it yesterday. Apparently, they’re sending me one more box. It’ll be this month’s Thanksgiving themed one. I think it’ll be Pennsylvania. I don’t exactly know, but I thought I saw something on it. I don’t know why I’d be getting one more box. It’s not like I double ordered or something. I suppose it’s not bad. 

I decided to order another states thing called 50 States of Mine. There was only the premium box option. It’s only a little under $7 more than the Celebrate States one. Not that much of a difference. It’s more food based, no ‘kid’ things, usually has 8 or 9 items (which is more than CS had), has things that are related to what the state’s known for, and just seems better. This is based off of watching youtube vids on it and reviews. If I don’t like it, or the value isn’t really worth it, I can always try something else. There’s an Irish box I could try or others. Apparently, the box for this month is Kentucky. So fitting. It’s my birth month and that’s the state I was born in. Seems like it was destined for me to try. We’ll see. 

I’m still getting the Treats monthly subscription box. I like it a lot. It’s fun to see what they have for each country. Again, it features a different country’s snacks every month. October’s was Croatia and Serbia. First time they had 2 countries. It seemed like they were pretty evenly split with where each snack came from. The oddest one to me, seemed oddly one of my faves. It’s called Smoki, and it’s peanut flavored cornmeal pieces. They described them as shaped like peanuts. They looked more like cashews. They used real peanuts in it. It had a strong peanut and salty flavor. Interesting. If I didn’t like peanuts it would have been nasty. The worst tasting of the box sounded like it’d be good. It was sandwich cookies with chocolate in the middle. I don’t know how they messed that up, but I almost threw up trying it. The chestnut chocolate bar was strong, but pretty good. I haven’t had chestnuts that often. The only other time I think I’ve tried them was someone I know makes a stuffing with them. I hate it in that. Maybe it’s the way they make it? I don’t know. 

There was a time where my pain got much worse. I had to be readmitted into palliative care to get it back under control. It seems my body had grown more tolerant to the morphine. I was trying to sleep back in my old bed. I didn’t know if they were going to take the hospital bed because I was out of the program for a little while. My pain increased while I did that in my back, pelvis, and neck. The neck was new, so they were worried about that. So it was a combo of my meds and sleeping in a different bed. Turns out they weren’t going to take the hospital bed, so I went back to it. The pain was slightly better with that. We ended up increasing my dose of morphine by quite a lot. So much, apparently my pc doctor was worried I could overdose and ordered Narcan for me. My parent would have to use it to revive me. That doctor ordered it after they exited me from palliative care again. That was odd. Didn’t tell me about it, until I pressured them about it. It seems I’m stuck with sleeping in the hospital bed. It’s in the family room, which is an odd place to sleep. At least my pain is better. 

I recently had a CT scan, full bone scan, and neck MRI. The neck one was because of that new pain. Everything was stable. Been stable for a while. It’s not exactly the best, because there’s no improvement. It’s not getting better. Just the same. We’re trying to get it to NED or No Evidence of Disease. I might feel better if there was some sort of improvement. I wanted a second opinion from Seattle Cancer Care Alliance. I was told to wait for them to call me. They never did. There’s got to be something more to try. I just feel like I’m constantly waiting for the next tests, and just keep taking my oral chemo. There’s got to be a trial or something more I can do. 

I started xgeva several months ago. Last month was my 3rd dose of it. It’s supposed to strengthen my bones. Most people with bone mets need something like this. It’s a shot instead of infusion. It really hurts as it goes in. I get it in the back of my left upper arm. The nurse likes to go super slow with it, so it draws out the pain. She thinks it minimizes the pain. It doesn’t. It’s so much fluid, my arm gets sloshy. Hard to describe. I haven’t really had side effects, other then the pain at the injection site. It might have affected my dysphagia (difficulty swallowing), but we’re not sure. If it did, it’s a rare thing. 

About a month ago, Tasha, one of our cats, passed away. I know she was around 17 years old, but this was sudden. She literally just collapsed and was gone. She was asking to be put up on the banister to get to her food and water bowls, and seemed so happy. I looked away for a sec and was getting ready to pick her up, when she suddenly collapsed. She made a howling sound. We weren’t sure if she was gone and took her to the emergency vet clinic. They came back and told us she was already gone. It was hard and I miss her. We have her ashes in a nice looking box urn now. I think Rosie, our other cat, still looks for her sometimes. They did not like each other, but I think Rosie just wanted to play with her most of the time. Now it’s just Rosie. I think she likes being the only one now. 

My birthday’s coming up on November 7th. We got Rosie from the shelter around my birthday, so it’s kind of like hers, too. She got a birthday card from Chewy. That was nice. Chewy’s where we get her insulin from. Maybe she’d like a tuna cake or something. I’m not sure about what I want. We’re going to the Oak Table for brunch. That’s a nice place. I’d like to go somewhere for dinner, but I’m not sure where. I don’t know what I want to do for my birthday, but feel like I should do something. Maybe go to some sort of museum? I feel like each birthday’s even more important now, since I have stage 4 cancer. It gives a different perspective on birthdays. My parent keeps telling me to not postpone the fun. I’m trying to have as much fun as I can, but sometimes I don’t know what to do. 

I finished the Yiddish course through Duolingo. That was interesting. I tried their Hebrew one again, and it was awful. I’m doing their French one now. It’s much better and fleshed out, of course. They have stories and a podcast on top of the course. Much more developed. Lots of speaking exercises, which is what the other courses need. I took all the French classes that were available in high school. I still remember a lot. It’s kind of a weird language. I almost took a proficiency test back then that could have given me college credits and a trip to Paris if I passed. My teacher was encouraging me to take it, but I was too scared of it. I should have tried it. I always had good grades in it. I have a just over 200-day streak now on there. Longest I’ve ever had. Should be interesting to see how long I can keep it up. 

I’ve been getting buzzcuts for about a year now. Ever since my hairstylist heard about my cancer, she hasn’t charged me for it. She feels like it’s something she can do for me. It’s nice, but it still feels odd. Last time my hair grew much faster than usual. There was a lot. Having a buzzcut is so much easier to manage. I don’t even have to brush it. It’s nice. 

We got a freezer a few months ago. That’s been really handy. I’ve gotten things like blueberry pancakes, bean/rice/cheese burritos, carne asada burritos (from Trader Joe’s, and one of the best), teriyaki rice bowls, chicken melts with pita, and more. Good stuff for throughout the day. A variety of new things to try. It has made it easier to keep track of my calories and other nutrients. I don’t get as many dinners from the local markets as I did before, which is good. Those are like made for 2 people, but look like single servings, so it’s hard. 

29th of Nisan

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.