Our internet is out so I’m using B’s hot spot in his phone for the internet. ATT will be here this morning. After they fixed the lines that went down in the storm the wifi has not worked. This happens every 2-3 years so I guess we should have expected it. But I was able to pay some bills and send off an email I needed to.
It is quite cold( 31 , this morning). But at least it’s sunny. Today, I’m going to the gym with my daughter who joined yesterday. What fun, now we can go together.
Flylady has 2 zones this week as Feb ends and March begins.
This also marks my 11 th birthday from my SCT. I went into the hospital Feb 28 and was released March 17. I spiked a fever and had to go back in for another night but overall it was ok. It takes a lot out of you since the drug Melphalan is basically mustard gas poison that is given to you to kill as many myeloma cells as possible. Then your own stem cells are reintroduced. You basically have your white blood cells go to zero and red too. I needed 2 transfusions. Finally, the stem cells start to produce healthy cells and your white blood and red blood count starts to go up. It is very difficult and you’re basically half dead.
So as this new month begins , here’s to my elevensies birthday. 🙂
I need to go the market for some milk and ? cat food. I’m not sure what’s on the dinner menu except I have asparagus to use up so I’ll roast those in the oven. Maybe a quiche?? I need to check the freezer to see that I’ve got.
It’s been a quiet day here. I went to the gym and it was really empty which is the way I like it. I’m working on 15 min. of cardio, then 20 -25 on the machines. I have a little routine and I am being really careful. I think once you’ve had a compressin fracture and know the pain it’s like a memory in your body. So I always lift carefully and never do something that feels too hard. Fortunately, with my Myeloma right now, i dont have bone issues but it’s always a reminder that it does happen. I’m especially susceptible in my ribs, where I have had fractures just from moving the wrong way. But for now since my numbers are all normal I feel it’s go for it so that when the inevitible happens I’ll be stronger.
Then B and my daughter went to Costco to pick up her dogs antiseizure meds, but alas, the pharmacy was closed. But they did pick up some fruit, and other misc. stuff. She still had to stop at the vets to get some meds refilled till I get back down to Costco.
All in all a nice Sunday. I was doing the Minimalists decluttering challenge this month and right now I’m on 90 things. so far from the mark of 400. So if you want to try it , it’s 1 thing on day 1 , 2 things on day 2 , etc. Most of my stuff was just odds and ends. I have our old flat screen in the barn my son was using so I’m going to take that to good will this week plus more Life magazines. Fly lady aones this week are the Living room and then on the 1st the entry way. Our LR is very easy, few knickknacks and so I dust and wash windows and that’s about it. Out entry is always a problem this time of year. Shoes, bags etc. There’s no place extra so it definetlry is a hot spot. Plus now the dog food bucket is there and off to one side is a covered cat box. Fortunately we use a cat litter called Swheat, which helps keep smell zero ( almost). So there you have it.
Tonight is pinto beans in the crock pot. Tortillas ,cheese and salsa. all the avacodas are too hard to add.
Actually, I’m a little surprised to still be here. When I was diagnosed in 2005 with myeloma, the average survival rate was 3-5 years. I remember my first radiation appointment and the radiation oncologist said oh, 3-5 years survival. I just about fell over right there. But here I am. And even more amazing, after 5 years of Revlimid and then Pomalyst for 6 months, I started Velcade and voila… I am in remission. Six sessions of Velcade or over 7 months. who knew. Pretty amazing and I am enjoying it for all it’s worth. I know I’ll relapse again, but for now, I’m a pretty happy camper. Although getting older means more aches and arthritis stuff, generally I feel good.
My son made me an amazing breakfast with cinnamon rolls, eggs, cheesy hashbrowns, and bacon. Yumm. Plus some lovely gifts.
Tonight is pizza night which I am cooking! I’m going to do a marguerite one, a bacon and chicken one, and ? I’ve been cutting the pizza dough in thirds and that seems to be just the right size.
As a long term cancer survivor of multiple Myeloma, I have had my share of side effects, issues, fatigue, etc…yada ,yada ,yada… It’s not fun being on drugs/chemo for so long but one puts up with it because well, we want to live. It’s kinda a no brainer. But one of the issues I have had really since my SCT is G I issues. It really started about 3 years into Revlimid when I noticed I was going to the bathroom a lot. I didn’t really quite register( a little slow on the uptake here) that I was having diarrhea a lot. I know I kept mentioning it to my doctor but he didn’t seemed concerned or said take Immodium. It started to get worse and I would need to go immediately after I ate and then I needed to know where bathrooms were etc. I didn’t go out to eat unless I felt sure I could get home in time. I figured this was something I had to live with. I’m off Velcade and Dex now but I was still having the same issues. Eat, bathroom…..not fun. Then last week I read the Myeloma Beacons column by Tom Shell about issues he’s having and GI issues. I always enjoy these columns written by very good writers and interesting people. But I also read all the comments since I learn SO MUCH from other people. Well, someone, Katie, mentioned a drug called Questran for diarrhea and I immediately was interested. I posted a comment to her about the drug etc, but it wasn’t published for some reason, so she didn’t get a chance to answer my couple of questions. Well, I looked it up and read all the details especially about bile and after eating the release of certain enzymes. It sounded exactly like what I have. I’m guessing this is a result of so many drugs over the years but also, I think my body is triggering this reaction. Well, the uptake is I e-messaged my doctor, who always is very responsive, and said could he order me a prescription for me to try since I’ll be going on vacation in August and I’m concerned about diarrhea. He said it’s worth a try and did.
AMAZING!!!! I’m taking 1 teaspoon in the morning and I have had absolutely no diarrhea. I want to give a huge shout out to Katie who wrote that comment, because I am amazed. I don’t to get too confident yet but today is day 6 and it is amazing to feel just a little more confident about going out to town or whatever. I am taking a very small dose and it’s doing the job.
If this has been an issue for you read what it says about the drug. It really described my condition totally.
June is not a happy memory month for me. June 15 ,2005 was my official diagnosis day. I’d had the bone biopsy the week prior with the neurosurgeon. I was pretty devastated. Plus the way the doctors went about getting the diagnosis was really half-assed. Why not just do the related blood tests?? I think the one sports doctor that I had gone to see about kyphoplasty just didn’t know how to deal with this. He was really awful. Well, the past is the past but I’m sure all of you can relate to that day, where you were when they said ,”you have cancer, multiple myeloma”. Geez, I hardly ever even been to a doctor, didn’t take antibiotics, used herbs and natural healing, spiritual healing. So to start this journey into radiation, chemo, SCT, was pretty weird, to say the least. But now, I’m a pretty seasoned cancer patient. I take it in stride and do what’s necessary.
Today in our little town it’s Pioneer day. A parade and then food int he park, lots of kid activities. We always went with our 2 children. Last year, we didn’t go and today is super hot, so I doubt I’m going. It’s a great community event though with lots of people.
This week B will be in Portland for a food show all week. I have my Velcade shot on Wednesday and that’s about it. I’m going to keep things watered( a lot of work actually), but now we’ve got the timers set up, I just need to go around and turn them on. I’m going to declutter and clean the laundry room which is actually outside our house in the back. I mostly just want to tidy and get rid of a few things. I’ll wash some windows too. I think our hot weather is going to diminish as the week goes on. I don’ have any shopping plans and I think my daughter and I will just eat simple dinners maybe sandwiches or salads.
i have to get my labs tomorrow and go to the bank.
Tonight is curried tofu with jasmine rice and a cabbage cucumber salad with a peanut dressing. It’s mostly the dressing I want to try fro the ‘plated’ cookbook.
Well, in cancer world , my absolute neutrophil count or ANC, has tanked to 667. Geez, if only it was 666. Then I could say it’s the Devils fault. Oh well, so, he said low but not too too low. ( low normal is 1500), so low. All my other blood work look great. Geez, do I really have cancer?? I just have to avoid people and not get sick if possible.
So, it’s just a waiting game to see if it’s worth it. My Spep test and free light chains won’t be in till Monday. So that’s the answer. If Pomalyst 4 mg worked and brought my monoclonial protein down then I’m on board for low ANC, but if not then Baby it’s time to move on to other things.
Up would be Krypolis a 2 day a week infusion. AHHH , that means sacramento 2 days a week . For 3 weeks, 12 days or 2 weeks off. I guess it’s back to feeling like a cancer patient. When you take a pill like I have for many years, it’s easy to just waltz in to the cancer center. No infusion room… It’s kinda weird but you feel like you’re a little out of the zone. Of course that’s not true, but that’s how I felt. So this will be different.
In other boring news, it’s a weird yellow sky outside due to a fire and really hot. One more day of 100 plus then a cool down!
The room my son left to go the studio is painted a pretty pale green and looks nice. My daughter will use this as her office for graduate studies . The studio on the other hand is a mess, but I don’t have to see it. The whole , I mean, tiny house , has been a mess for a week. My nerves are shot looking at stacks of things. So, by this weekend hopefully it’ll be back to some sense of normal.
It’s official. we are going to Seattle next week. Dr. Libby is starting a clinical trial and is not taking new patients, so I’ll be seeing another specialist, Dr. Green. We will spend 3 nights there so we can sight see. Seattle is on my bucket list so, all in all a good thing.
I was think of starting a gofund me account..to help with this expense but feel kinda weird about it.. any ideas anyone.??? Not sure how to do it. But with plane tickets and hotel, food.. we’re probably looking at $1800. The hotel is almost $800, yikes!!!! Maybe this is why I haven’t done this before, because its dam expensive.Well, at least this will give me a different look at my myeloma. I’m fortunate I’m not in crisis mode. I don’t like surprises, so hopefully nothing alarming comes up.
I’m off for labs today, a few groceries (ha!) ,then maybe a couple of other errands. I’m going to go buy a top or two at old Navy to bring with me to Seattle. Maybe tomorrow if my daughter wants to go too.