Category Archives: peritoneal mesothelomia

Friday Things

Posted in budgets, California, cancer, Death, frugalism, husband, peritoneal mesothelomia, Uncategorized by

I’m still processing things from Barclay’s death. It’s very weird, honestly, to be the person left to keep on going. I take some comfort in that he lived a good life and got to be 74, almost 75. Look at those poor kids in the Texas flood who didn’t get past 10. Very sad. The last year has been so hard watching his decline, and the last 3 months were pretty awful. He really didn’t have a chance with peritoneal mesothelioma. It’s just one of those cancers that you don’t get over and go into remission. I got the letter already from SS, which I’m happy about, so I don’t have to go into the office. I’m losing over $1000 a month, so quite a hit. I’m sure there will be ways to figure it out. I cancelled his UHC, so that and his Medicare covers almost $500. Insurance is outrageous. The rest, I don’t know. I do plan on selling the Triumph in a few months, so that will, if it sells, generate a few dollars. The totally weird thing was when I called Allstate to take him off as a driver, she said our insurance WILL GO UP ANOTHER $125. WYF??? After talking to our local agent, she got it to go up only $65, so half. The issue is his good driver discount being taken off. JFC, really? Oh well, done is done.

I’ve gotten through most of my list of things to do. There’s still the bank where I need to take him off our account, but I’ll get to it eventually.

As I said, very weird to deal with this stuff. We all miss him so much.

My daughter ordered this from Shutterfly. We hung it out on the upper patio where he spent the last 4 months of his life sitting when the weather was nice.

Frugal wise, I haven’t been spending too much. I did order a new Speedo from Amazon on Prime since I need a new one. I go through a swimsuit about once a year, with the chlorine from the pool. It was 30% off, so it was a good deal. I also bought some black frames for some watercolor pictures my daughter has done, and some that B did too.

I signed my daughter up as a user on my Costco card, so she went in after work and did some shopping. I appreciate the effort. Mostly it was flavored waters, olive oil, coffee, and some wild cod. She’s very susceptible to histamine attacks, so she’s been on a low-histamine diet, hence the fish purchase. The total came to a little over $100.

Our weather is very hot, and the coolers are running most of the day. If I close everything up, I can usually wait till 11 am, and I always turn them off by 8pm, even if it’s still hot out.

I started going to LLS every morning to apply for my grant, but so far, there’s no luck with funding. I’m hoping the wait isn’t too long, as I depend on that money for my insurance.

My son is using B’s truck since his car( older Subaru) is leaking oil. So he got off work early yesterday and took a load to the dump. There are still 2 more to go with metal stuff, and then the old wood from the chicken coop. It was hot yesterday, so I appreciate him doing it and getting it done. I’m pretty sure we’ll keep the truck, but unsure about Rubi. I just don’t know if I can emotionally handle going out in the RV without him. I guess I’ll just have to wait and see when the time comes, and we can plan something. My daughter has volunteered to be the driver, which she can totally handle; it’s more me dealing with it. Plus, Rubi is really designed for a couple, not 2 people. It’s one bed, and the couch does fold down, but it is very uncomfortable to sleep on. So another decision down the road.

Well, that wraps up what’s going on here.

How’s things in your world?? Summer plans?

Friday Things/ Happy 4th or is it for this country?

Posted in California, cancer, husband, peritoneal mesothelomia, Political things, swimming by

I dont really need to go into it any more than that as I’m sure you are all aware of how awful that bill is and how many 17 million people will lose health care. What a travesty. History will tell the tale of this being the worst administration in history. It’s cruelty, racist, white nationalism, harming LGBTQ+, and on and on and on.

I managed another swim so I feel like I’m slowly getting back to some routine. The pool was glorious as it was not busy. I feel I’m floundering with my schedule so I would like to try and figure out a ‘new’ one going forward. I’m also somewhat depressed so I’m not feeling very motivated but hopefully this will pass.

After the pool, I went across the street to Winco and spent $75 some of that was wine for the week ahead. Then I crossed the parking lot and went into Trader Joes. I spent about $100 there but got lots of our favorites. I picked a few frozen meals, hatch chile and macaroni , and their green chile tamales too. I also got eggs, milk, bread and some other basics.

I’ve had some very touching cards from a few people about Barclay but the 2 most endearing were the two people who donated to a tree planting in B’s name. We too are going to plant a tree this fall for him. He loved trees and his BA was in forestry so there’s a link plus all the years he worked part time for the Forest Service were important to him. He was a firefighter for a number of years( starting in 1974) with the Forest Service and we kind of think that may have had a link to him getting the mesothelioma, although know can ever really tell. I think our best guess is it was just a break down of DNA like him getting MDS, a blood cancer. Unfortunately, meso, is a tumor load cancer and therein lies the difficulty with treatment.

I’ve gotten through quite a bit of tasks to be done but there are still more to do which I hope to finish next week.

He was on KVMR radio for 25 years as a broadcaster with his show being all about Dylan. So he has quite a few CD’s of his show so I plan on buying a CD player so I can listen to some. Of course, we had an old CD player that we used for camping but got rid of that when we got Rubi.

Midweek Musings

Posted in California, cancer, cooking, hospice, peritoneal mesothelomia by

We met with the hospice intake nurse yesterday. I was so impressed with the efficiency and information. She was so obliging with everything. She made a list of what B needs, like oxygen, a shower chair, etc, and by 5:30 that evening, it was being delivered. I was kind of blown away. They showed us how the oxygen works, so when he needs it, it’ll be there. He hasn’t really needed it yet.

Today, I need to go to town to pick up his medication. All of his meds now will be through hospice, but his pain med had already been filled yesterday. I couldn’t go get it because my daughter headed down to work.

Last night I did the big salad of spring mix, tomatoes, cucumbers, and the leftover polenta. Then I pan-fried the Costco breaded chicken(freezer), which, by the way, is quite good. B ate some polenta and a bit of salad.

The nurse gave us a binder with info and a 24-hour call number if anything comes up. My biggest concern is B falling. Especially because it most likely will be his low blood counts that he will succumb to. When his hemoglobin drops too low, then that’ll probably be it. The drop in hemoglobin will cause him to be even more unsteady.

I’m continuing to putter around the house, and I have a nice little load to go to Goodwill. Any duplicates of things are what I’m focusing on. Also, in the kitchen, I have a number of OXO containers I’m not using and don’t foresee using, so I’m passing those on. As always, I am looking around for ways to streamline the house. It makes it so much easier to tidy up, clean, and maintain.

I hope these days find you well and living your best life. Life can turn on a dime, as they say.

Thankful Thursday

Posted in California, cancer, Gratitude, peritoneal mesothelomia by

I am very grateful my Ortho appt went well. Here’s the scoop. The meniscus tear doesn’t ever heal, but strengthening the knee by exercises helps you regain some mobility. I started back in with the PT exercises and have slowly been adding one a day. The PA seemed to think I didn’t really need the PT appts since I can do what I have from before. But she did say she’d be happy to refer me if I wanted. She also gave me the steroid shot. She said there is another type of shot, too, if I wanted, but that requires insurance approval and takes a while. I said I’ll try the steroid shots for now. Overall, I was quite hopeful that I would be able to get back to my regular routine.

I’m thankful my son offered to take B to his appt. As it turned out, he needed a blood transfusion, so it ended up taking 5 hours. They didn’t even get home till 6:15. I would have been a basket case. He’s still declining, and his onc called yesterday, so I talked with her about how things are not going well. She hasn’t seen him physically, so she was concerned about how frail he is. She did say that the immunotherapy can take a few months to kick in, but the flip side is that the immunotherapy could be feeding the cancer. It’s all very depressing. She was going to get the PET scan moved up so we could see what is going on.

I’m grateful for the rain we had the other day. It helped water the yard and took down some pollen.

It’s a hard time right now, and I don’t expect things to get better anytime soon, but all we can do is be hopeful. And for that I’m grateful.

Happy Mother’s Day

Posted in California, cancer, husband, peritoneal mesothelomia, Walking by

I hope it’s a nice day for moms out there. Whether you’re a mom to kids, furry ones, or anyone who needs a mom. I hope it’s lovely.

Simple Sunday

My son is coming over and he’ll make a brunch for us all. He’s not staying over, though. He’s on the schedule to take B on Tuesday to infusion. I have my Ortho appt that morning, so I really didn’t want to go out twice.

It’s been quite warm here in the mid-80s, but now we’re in a cool down. There could even be some rain this week.

I went for a brief walk again this morning. Lots of Canada goose families at the park. They are cute, but you don’t want to go near them as the parents will attack.

I can tell I’m not used to walking even this little bit, which is such a shame after all the effort I put into walking, swimming, etc. I do hope that after my ortho appt, I have a clearer path to how long this will take to heal and what else I can do. Since it was a spontaneous snap of the meniscus caused by age, I guess it’s just trying to be more careful and keep strengthening the knee muscles. Getting old is tough when you realize these things can happen out of the blue.

B continues to have no energy, and there doesn’t seem to be any improvement. I’m guessing at some point we’ll need to discuss hospice with the doctor. I’m hoping these next few immuno’s make some difference. He will get a PET scan after the 6th one, but that’s not till June. It’s hard on everyone.:(

Tomorrow we should hear back on the VW, and since B can’t drive right now, my daughter and I will go in and get it. I hope this is the last thing to fix, as after this, I wouldn’t put any more money in her. I do love buggie, but there is a point when the cost just doesn’t justify it. We’ll see how it goes.

We don’t have anything special planned for dinner, but I may make some salmon I have in the freezer. On that note, Ciao!

Thankful Thursday

Posted in Blood test, Bone marrow transplant, California, Gratitude, husband, peritoneal mesothelomia by

B had his transfusion on Tuesday, so he did feel better yesterday. But he got labs yesterday, and though his hemoglobin came up, it wasn’t enough to get over the 8 mark. So he needs another transfusion. I’ll take him Saturday, and my daughter will pick him up. I’m very grateful to the oncology infusion nurses, who called him and told him his labs were still low and scheduled him. Very thoughtful of them.

I’m also grateful for his doctor, who has been very proactive in all this. She mentioned to B, though, that he should contact his BMT team to see if his needing blood transfusions may be a relapse of his MDS. It seems a stretch to me, but his needing transfusions when he’s not even going through chemo is a problem. She had said the side effects of the immunotherapy are not blood-related, so now we have another puzzle piece to figure out. Very odd.

I’m thankful for our sunny, warm days. It’s been really lovely. I do miss terribly not walking and being out at the park. But I should know by next week what the story is and how to proceed. I’m sure they will recommend PT, and I’ll do that to help strengthen my knee.

I am, though, very grateful to still be able to get around with the use of a cane for stability. My son found one at Goodwill, and it’s been very helpful. I had been using my walking stick, but that has a different grip. So the cane has the handle you put your hand on, and it does give a lot of support.

I’m grateful that the kids are so helpful with driving and doing stuff around here. My daughter has been mowing and weed-eating all week. It’s a pot of work that B usually did.

I’m very thankful tRumps approval rating is tanking. Let’s hope it tanks even further.

What things are you thankful for this week?

Simple Sunday

Posted in California, cancer, cooking, decluttering, husband, peritoneal mesothelomia, Uncategorized, Walking by

I miss my morning walks. I miss the morning routine and being down at the park with no one there. It’s quite difficult to not be able to go out early. I’m hoping once I know what this is, I can make a plan. I have the MRI scheduled for next Saturday. So hopefully by the following week, I can get into PT or at least have an idea of the timing on healing. If I remember, my torn ACL and meniscus on my left knee took at least 2 months before I was back walking and swimming. Because there was no trauma to my knee( like the last time falling off the step ladder), I’m hoping it’ll be quicker. I guess, like everything right now, it’s wait and see.

Today I plan to make what has become our Easter tradition. We don’t celebrate Easter, but I like the idea of a special meal, and for us, that is Southern fried tofu. It’s really just breaded tofu, and I make a tartar sauce to go with it. I will make a potato salad, and I have some asparagus to use up. I’ll do some ham for anyone who wants a meat option. I have a Mumm Champagne too. That always makes things festive.

I didn’t even put out my Spring decorations this year. I have some ceramic bunnies and chicks and a few other things. I guess with B being so unwell, I’m finding it hard to do extra things. I think I’ll go get them today and put them out at least for the next week or so.

I did go and drop off all my vintage Pyrex at the Assistance League thrift store. They do good work locally, and I like to support them with good donations. They seemed excited to get them. For me, that’s one less thing to wash and keep clean on a shelf. It was interesting that I had just watched the YouTuber, Minimal Mom, and she was talking about reducing inventory when you’re stressed. I think she was quite right about it. So in that light, I’m really looking hard at what I have around me that takes up space and that I don’t use.

Things are difficult right now, but I’m hoping that next week things improve. B has his next chemo at the end of the month, so maybe after that he’ll start to feel better. We can only hope.

Where we are now.

Posted in books, California, cancer, husband, peritoneal mesothelomia by

After the shock of Stanford canceling, we’ve moved on to the next phase. Barclay had to cancel all the hotel reservations, and both of my kids had to rearrange the time they had taken off. They did so, and it wasn’t a huge problem as they both have flexibility at their jobs. My anger was at Stanford for waiting to let us know. Dr. Lee had seen his CT scan weeks ago. That’s what upset me the most. Anyway, I’m over it now. ( mostly!!)

After we got that news, the next day he had a video visit with his UCD, and she set up the immunotherapy appointments. Barclay had the first one yesterday. Side effects can be nausea, thyroid problems, and skin issues, but it shouldn’t take down his hemoglobin to the point where he needs transfusions. ( At least I hope so). He will be going every 2 weeks for this. We can only hope it gives him some reprieve and he gets a little more time. He is still not eating very much, and of course, that’s a problem.

On top of all that, I had my right knee go out on me, so I’m wearing a brace and will need to get an MRI to see what it is. The doctor didn’t think it was any kind of fracture so until I get the MRI, ice, and ibuprofen. The only thing I can come up with is 4 days before I did an extended swim, and maybe I overworked my knee. Still, it may be an age factor too, with knees wearing out:(

We’ve had beautiful 70-degree weather, and everything is in full leaf and bloom, including the wisteria. Today, I plan on being home and hobbling around to take care of the house chores. My daughter has been doing the bulk of it for us. My son is going to stop by and do some chores as well. I’m grateful they can help.

I’ve read a few books from the library and including the new B. C Beaton’s ‘Death of a Smuggler’. It was fun to read Hamish Macbeth again. Also, we’re finishing ‘Dark Winds’ based on Hillerman’s Leaphorn and Chee characters. It is excellent. We finished ‘ Reacher’ and I wasn’t too impressed. The actor is a good Reacher, but the adaptation of the story just doesn’t quite fit.

Well, that’s about it. Life goes on. The sun will rise, and today is a new day.

Saturday

Posted in California, camping, cancer, canning tomato salsa, freezer cooking, peritoneal mesothelomia by

Frugal Friday got sidestepped by other things.

But I did go to Winco once after swimming and spent $58, although $15 of that was a bottle of wine. So $43 for food. I also got gas at Costco, which is always a savings. Other than that, nothing was spent.

Today, I have to take Barclay down to Infusion in Rocklin. I was going to do a Trader Joe’s stop, but nothing is urgent, so I think I’ll wait. This will take about 4 1/2 hours, so my daughter will go down to get him at 2:30 or so.

The video visit with Dr. Neal was a waste of time. He really didn’t say anything of importance except that the one spot on his spleen was concerning. But I’ve read on the Facebook group that people will have their spleen removed during the surgery if it’s impacted. So now we wait again till we hear from Lee. Honestly, at this point, I think it should be our call. He’s the one taking the risk, and if this can remove tumors, then that’s what we want. So I think I’m going to be hopeful that it will go forward.

After I get home, I plan on processing the rest of the tomatoes from last summer I froze. So I have 3 bags to do. I think I’ll cook them down, then run them through the food mill and can them tomorrow. I also am planning to make chicken broth but will pressure can that. Does anyone use the Presto pressure canner that’s automated? Lots of people swear by it because there’s no waiting for the All-American to come up to pressure, then juggle at the right time, etc. I’ve looked at them on Amazon, and they run around $350, so a big investment.

We’ve booked a spot in Tahoe for September, so that’s exciting. Belived me that’s like winning the lottery to get a spot. It took us 6 tries to get a spot, so if you’re trying to do anything in Tahoe, beware of how long it can take and plan accordingly.

Thankful Thursday

Posted in California, cancer, peritoneal mesothelomia by

I’m thankful to be flexible about getting up and going walking. This morning I have to leave at 7:45 to get my velcade shot at 8:30 so I’m skipping walking.

After the shot, I plan to go to the gym, which I’m grateful for as well. It’s a lovely gym, and the library is next door. I have a book on hold, and I’ll check the new books, too.

I’m thankful that B’s oncologist DID call right away yesterday. The news is not great. The tumors are all growing again. The liver was fine, though. Weird. She will consult with Stanford but my guess is Dr. Lee is not going to do the surgery. Here we are, 2 weeks from it, and this shit happens. She also said after seeing his labs that he needs 2 bags of blood. So we’re back in it. He got an appointment for Saturday, so I’ll take him and my daughter will go get him. Some people in the Peritoneal Facebook group did say they have had surgery with the tumors present, and they are then taken out during surgery. I just don’t think that’s Dr. Lee’s approach, but we’ll see. B has a video visit on Friday afternoon, so we’ll know then. The video visit is with Dr. Neal, but he is Lee’s right hand person, so I’m sure he’ll know what the next step is going to be.

Also, I don’t want him back on chemo but to do the immunotherapy. Again, a number of people in the Facebook group said it’s much easier to handle than chemo. I guess we’re sort of back to square one. It’s all pretty fucked up.

I’m thankful that my kids can support their Dad and are there for him.