Barclay died at 6:57 on Juneteenth. A fitting day for him as he was all about equality, diversity, and inclusion. He was a conscientious objector during the Vietnam War because of his Quaker beliefs. So Juneteenth was a perfect backdrop.
We were all there ( both kids and I), and it was a cool sunny evening. Death is never pretty, but he died as peacefully as expected.
At some point, we will take his ashes to the Lake Tahoe area and scatter them. There are quite a few things to take care of, but I figure I’ll get to them when I do. We had all the important stuff done, but now there’s still misc like removing him from different accounts and such. I’m not in any hurry, and like I said, I’ll get to it eventually.
I miss him. I guess after being with someone for 55 years, that’s expected. In some ways, we had a storybook life of adventure and travels. Money-wise, we never did that one very well, but here we are.
My daughter was amazing in the last few days, taking care of medication every 2 hours and keeping track of things. The nurses were all impressed with her efficiency. My son is having a harder time with it all, but he’s been here helping do stuff and move things back to where they go since we had a lot of equipment in here. Everyone grieves differently, and I suspect him keeping busy will help him.
Sunday night, we had a Greek pasta salad, and B ate some! That made me happy.
Monday- left-over Greek salad, and my daughter made a pan of polenta with herbs and cheese.
Tuesday- something Mexican. I have beans and rice, so I just need to add a protein.
Wednesday- I want to use some pasta (fettuccine from TJ’s) in the freezer. I’ll add grilled chicken or some shrimp.
Thursday- Again, some freezer meal to keep working our way through stuff. Plus, I have a container of spring mix to use for a salad.
Friday- not sure. My son is coming up to get the truck and smog it. He’s spending the night because the next day he’s going to do a dump run. Of course, all this depends on how B is doing.
All in all, we’re keeping it very simple. Nothing too involved. Just simple food.
Anyone who has had cancer or is going through end of life recognizes how small your world becomes. You just don’t go out a lot or even really care about much except what’s next. I’d love to go down to the pool or the gym, but I’ll have to see how each day shapes up. If I can, I’ll try and do something this week.
We did a phone intake with hospice yesterday. It was very thorough, so we’ll see what today brings.
It’s difficult to be thankful right now when everything feels so bleak. But I must remember that this too will pass, and the pain of right now will also pass.
I’m thankful my doctor’s appointment went well. Honestly, as long as the Velcade is working, I’m extremely grateful. I don’t have a clue how long it will be effective, but there are other treatments that are still available. I just can’t think about that right now with everything else going on.
I’m grateful that the weather isn’t terribly hot, but it has been in the mid-80s. We’re still turning on coolers, but not til later in the day and only for a few hours. We’re still watering the yard every day but less than we normally would have to if it was 100 degrees.
I’m grateful that my daughter has had a break from work, and she has done so much around here. She has a number of shifts coming up, but this week has been so productive. Right now, she’s dismantling the chicken coop. B built it very well, and she’s having to take down each wall before getting to the roof. I thought it would be a good greenhouse, but really, it’s got too much ‘chicken’ left in it. The space will be nicer open.
I’m grateful for B’s oncologist who has been very supportive.
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!
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.
I went to the Auburn gym to do weights and then headed down to Costco. I had the motive to keep driving the Santa Fe to see if anything happened again. It didn’t. I plan on calling one garage today, though to see if they can run a diagnostic. I’m not sure if they will be able to do that this week, but I’ll try.
At Costco, I got coffee( the main reason), B needed Tylenol, and then I picked up eggs, bananas, and some other stuff.
It was a beautiful sunny day with temperatures close to 70 degrees. Sitting in the sun, it felt much warmer. Today, it’s raining, and it’s certainly fickle weather. Spring, I guess.
We are at T-6 days and counting down to Stanford. B will find out Friday what time to be at the hospital Monday. I’m guessing very early, as this can be a long surgery. He’s had his pre-op video appointments, and they all went well. Today, he has to get labs to check his hemoglobin and, if necessary, get a transfusion. I hope not, but we’ll do what’s necessary.
I plan on being home today and doing a house reset and some baking. I have a loaf of sourdough to make. I’ll put my starter back in the fridge after this as I won’t be making bread for a while after this. I’m also going to make a new recipe of Chicken adobo.
Tomorrow, I plan on going to Mahany gym and the library. I have a couple of holds at the library. Then I plan on swimming on Wednesday.
I’m thrilled at the huge turnouts for protests against the administration. It’s exciting that so many people came out to do that. I’m an optimist, so I think it will matter in the long run. What this administration is doing is trying to rewrite history and destroy democracy. It’s scary what is going on.
Menu for the week:
Chicken adobo with basmati rice. I have some tofu for B; plus, he’s not eating very much, which is worrisome.
Beans in the crockpot. My Ranch Gordo order showed up so I may make a new bean to me. Eye of the goat. I’ll check Steve Sando’s The Bean Book for a recipe.
Pasta of some sort. I have a TJ’s pasta alfredo in the freezer, so I may pull that out.
Brinner
Pizza
TBD, and then we leave Sunday morning.
My daughter will be coming with us to help out with driving and navigating the hospital. My son is planning to stay here and take care of the cats. He still has to work most of that week but will stay here at night. The cats really like their routines so this will be somewhat upsetting to them. But it’s the best we can do right now.
I’m thankful for the beautiful weather here in Northern Ca. Our daffodils are up and the flowering cherry tree is blooming. Today is supposed to hit 70. nice!!
I’m grateful B is recovering so well from the laparoscopy and he can pretty much do what needs doing. We have a date now for the surgery and Hipec. It’s April 14. So the plan is to arrive Sunday and he will need labs. Fortunately, the lab is open on Sunday. Then Monday is the surgery although we don’t know the time yet. The surgery is where the surgeon(Dr. Lee) goes in and basically scrapes any cancer areas he sees. Then he is closed back up except for tubes that will administer the chemo. That part I’m not sure how long it will be but it could be quite long. At this point, I am NOT staying in the hospital but will go back to the hotel. After last time sitting in the waiting room just about did me in. Then the plan is I will go see him on Tuesday and check in about how things are. The last time Dr. Lee called me after the surgery was over so I suspect he will do that again. Then B will be in the hospital for at least a week. We haven’t figured out part 2 of getting him as I do not plan on staying all week.
I’m thankful for good food that I cook and feel good enough to do that. Last night we had a piece of the Halibut I got from Alaskian Fish. I think it was the first time I’ve had halibut and it was very good.
I’m grateful I can get my Velcade shot today in Rocklin and not drive into Sacramento. That is a real time saver and emotional one too not having to deal with Sacramento traffic.
I’m not so thankful for Dex overall, but it does do the job so I guess I am grateful for that.
I’m thankful ” to be alive on this fresh morning in this broken world”. What else can I say? Our democracy is in serious danger of falling apart thanks to tRump and mUsk. What a bunch of assholes.
We made it down to Palo Alto on Tuesday in good time. 4 hours with one coffee stop. Traffic was ok. Our first stop was back at Stanford medical Center so B could get his labs. We got a little turned around (confused) as to how to get there from our direction but we figured it out. I wanted in the parking lot while he went in. it didn’t take long.
From there we went to where the hospital is and got a sense of parking etc. It’s an underground garage. Next, we decided to check into the hotel ( Sheraton) and they had the room ready. These rooms are discounted for medical patients at Stanford and we are very grateful. The room had a nice king bed and was very pleasant.
We were very happy with the room and B figured out how to park around the back of the hotel and from there, it was straight into the elevators and up to our room. I slept great both nights and weirdly my sleep disturbances were not elevated so I thought that was odd. So now I’m thinking maybe my higher elevations have something to do with our bed. Our bed is quite old and maybe when I’m turning at night it’s recording ( my Apple watch)this as disturbances. The hotel bed was very plus and even when I turned it seemed to absorb that. Then interestingly, last night, no differences in going to bed, etc, and my disturbances were quite high. So very odd and I’ll keep observing this.
Then we decided to go to a pizza place, Delpino’s, in downtown which looked good and not far from the hotel. OK, one tells you that downtown Palo Alto is congested, has no parking, and is a nightmare to navigate. We circled 3 times looking for parking after we found the restaurant. So eventually we found a parking lot(city) about 4 blocks away. It was so weird that there were so many people. Maybe not for them since I’m assuming they (whoever lives there) do this routinely. Anyway, we got the the restaurant. They had some tables for 4 it looked like but the hostess said, the bar was the only place. I could have made a fuss because sitting on a bar stool is not easy for me with my back, but we said ok. The pizza was totally worth it though.
It was expensive and we decided the rest of the time we’d just buy stuff at Safeway.
We made it back fine and watched some Amazon BritBox for a while.
The next morning we went to Safeway for supplies. I got a sandwich for dinner and some cottage cheese for B because we weren’t sure what he’d feel like eating if anything. From there we did a dry run to the hospital and found the building we were supposed to check into. We went back to the hotel for a few hours until it was time to go.
We found the underground garage and parked(crazy busy). Then onto the Bldg 3oo. So many people. But we checked in and then B had to wait till 1 and then he got called back for pre-op. i waited in the waiting area. After an hour I was allowed to go back and sit with him till surgery. OMG, there were so many patients waiting it was somewhat overwhelming. Dr. Lee showed up to say hi and explain what he’d do. Then the anesthesiologist showed up and then 45 minutes late he got wheeled away. I went back out to the waiting area. It was a LONG wait. The waiting area was also very uncomfortable so that didn’t help.
Dr. Lee called me at 4:30 or so and said the procedure went great and his abdomen looked great. The chemo had done a great job he said. So he said surgery is on unless something in the biopsy shows something else which I didn’t quite get what it was. None the less I was over the moon happy. At about 5:30 I was allowed back in post-op. B looked good and was eating a snack pack they had brought him. He hadn’t had food since the night before at 6pm. So then we had to just wait as is protocol for 2 hours.
We finally left at 7pm. I had to go get the car and meet him out front as he was in the wheelchair. By then it was raining, so not fun.
We got back to the hotel and I had half my sandwich. He had some fruit and crackers.
All was good and he wasn’t in too much pain. They had given him an oxycontin before he left.
The next morning it was raining and we loaded up the car and headed out. Traffic was heavy in Palo Alto but we reversed how we got there and by the time we were changing from 92 to the bridge and then 280 traffic was moving along. So there were no slow downs and I didn’t get confused once about what road to take. The rain stopped somewhere after an hour.
It was a great drive home.
today, He’s doing well, not much pain he said. The incisions are very small and we just have to watch for infection. All good at least right now.
We have to get his prescription for the pain meds but that’s it.
This has really been an awful year. B getting diagnosed with peritoneal mesothelioma was such a shock. Also, it doesn’t have a very good prognosis. Then because of this, we had to cancel all our RV trips and it’s been hard to not head out somewhere. All in all, it’s just been a hard year. As we close 2024, I’m still thankful for many things.
that he’s had the last chemo and will get a PET scan soon. So going into 2025, we should know where he is with it all.
I’m thankful that, even with me getting Velcade, I can do most things that need to be done.
I’m thankful my kids are there to pick up the slack and help us so much.
I’m grateful that even though money is always tight on SS we can pay our bills. There’s not a lot left over but we have a roof over our heads, food, and hot water, wood heat and lots more. It would have been nice to not have a mortgage at all but that wasn’t in the cards for us. At least we can pay for it.
I’m thankful for the library and the world of books. Books, even as a child, took me to places I’d never been. Today, at 72, I can say books still carry me to unknown places and show me a different perspective.
I’m hopeful for 2025, but I think it’s still going to be tough going especially when we head to Stanford for the surgery.
One step at a time, one step at a time.
My appt went ok yesterday. It was quite busy in there but I still got in on time. Dr. L asked if I had any sleep apnea. Not that I know of. I guess my hematocrit is slightly elevated and he said to consider getting a sleep apnea test. Even if I did have it, I wouldn’t use a mask at night unless it was severe. Does anyone out there have any experience with sleep apnea. My guess is the hematocrit goes up and down because of not drinking enough water. Dehydration is one cause. I never drink enough water. Plus it’s been 1 point out of range for a year. 15.5 is high normal, I’ve been 16.4. I’m not sure why he brought this up now, but I said, I’ll think about it but I really have too much going on to add one more thing. I’ll do some more research and see what I find out.
It’s been a lot of driving back and forth to infusion and there’s still more this week. Yesterday, I dropped B off at 10 and picked him up at 2:45. Tomorrow he needs to be there at 11am so I plan on staying down there and doing a few things. Depending on the timing, I will hit up the old Costco( as it’s closest) and I think maybe the library. Tomorrow is platelets so they go faster than blood transfusions. This week is all about appts so I’m not even thinking about the gym or the pool. Next week, I can pick up the rhythm again.
This is his last chemo as far as we know and I’m so over it all. Next week he has a video visit with the UCD doctor and that should give us a good idea of the next steps. Cancer has a way of shifting priorities. There’s not much you can do but go with the flow of it.
Today, I have my doctor appt in Sacramento. After that, I need to pick up a prescription and maybe go to the bank. I need the insurance printout but I’ll see how I feel after getting back to town.
last night we had the black bean soup and it came out good. I never follow a recipe with it just black beans in the crockpot and chili powder, cumin, garlic, and paprika. I also made turkey chili and there’s plenty left over to have tonight or freeze. Of course, B doesn’t eat meat so it’ll just be me tonight as our daughter works late at the library.
I’ve been working on organizing my cash envelope binders and have one just for savings challenges. The challenges are fun and usually, I only do ones with $1 or $5 bills. I’m saving up for an LV GM agenda preloved. I think this is what I want to use as my daily book. Once I get it, I can get some inserts and use them to write my lists and plans. Right now I’m using a really nice Leuchtturm 1917 my son gave me for my birthday. The paper quality is really nice. I use a CrossFountain pen and it doesn’t bleed through. The LV GM is the largest agenda and will make it easier to write in. Well, that’s a ways off yet but maybe by February/March.
I've been married for nearly 20 years to a wonderful husband and I'm a mom to three great kids ages 17, 16 and 14. Oh, and I just happen to have cancer. Multiple Myeloma is a cancer of the blood that is currently incurable but IS considered highly treatable! My goal is to make people laugh, cry or feel a little less alone whether you are a mom, cancer patient or BOTH!
Tahoe Girl 