Tag Archives: Stanford

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.

Simple Sunday on Monday

Posted in California, cancer, cooking, home stuff, husband by

Yesterday was just an off day.

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.

Simple Sunday

Posted in bread, California, cancer, peritoneal mesothelomia, velcade by

I’m waiting for the oven to get to 475 so I can put the bread in. It takes a while with this oven. I’d like to get a new oven in the next year or so. Plus those knobs on the side are problematic. Anyway.

I went to the Auburn gym and there were ‘new’ people there. It was just getting busy when I left. I didn’t have to do anything in Auburn so I came straight home. It’s so nice not to have extra chores.

We had two more pieces of the Wild Alaskan fish I’d bought. This was the Coho salmon and sockeye. They were both very good. I made some couscous to go on the side. tonight, My son is coming over so I need to think about what I’m going to make. I might just do the Costco ravioli.

The week ahead looks a little busy with a dentist’s appt and then my Velcade. Plus, if I decide to do another gym or swim day. I haven’t decided yet.

My daughter has been planting the onion sets and garlic. She also started a bunch of tomatoes under grow lights. I’m sure glad she is the gardener. I like picking stuff but not planting stuff.

I hope we get a call from Stanford this week regarding his appt. I’d like to know when we’re going so we can book a hotel. As I’ve said, it has to be 2 nights minimum, and the first day down there, he has to go get labs as they want to use their labs and not UCD. So that will add to the day. Parking is an issue, so I may just drive around till he’s done at the lab. We still don’t even know where the hospital is. Where we went was the medical center, so we needed to get a map of that.

Well, that’s all I have today. I hope everyone is having a nice Sunday.

Stanford Medical Center

Posted in California, cancer, Death, husband by

We got home quite late last night after the worst drive I’ve ever had. We left around 1pm after B had labs done.

From there, it was bumper-to-bumper traffic all the way to Livermore. Then it started all over again. Traffic was so congested on the freeway that I was completely shocked. Was this normal Friday traffic? Then it continued even as we got on 5 north. Then apparently an accident kept traffic at a crawl ALL the way to Sacramento. It was horrendous.

But to go back to the beginning. The Medical Center is certainly state of the art. Beautiful and so big.

We did have a nice drive down with only 3 tiny slowdowns. We got to Palo Alto Stanford Medical Centre by 12:45. Since our appt was 2 we had lots of time to relax and regroup. Dr. Lee had his Resident doctor come in first to go over things and then he came in. He’s the surgeon who does the Hipec. So he planned out, first Barclay will do 3-4 rounds of the chemo. Then sometime in the third round a PET scan to see if the tumors are smaller. Then if the chemo has worked he will do a laparoscopy on his abdomen to look at the tumors with a camera. Depending on all that it might be surgery after that. It’s all a bit iffy at this point.

We left feeling positive and confident he is the leading expert in this field in N.California.

We headed over to the hotel and checked in. It was almost 4 by then and we we’re pretty tired so we rested a bit. Oh, we had stepped at Safeway to get something to snack on. We had seen a Mexican place on our way to the hotel so we shared a dinner there around 7. We were quite tired by then and just watched a little TV before lights out.

The next morning we headed back over and parked by 10 am. His appointment was at 11. But, then the appt was late and we only got in to see Dr. Neal’s NP at almost 12noon. I was definitely feeling annoyed as I wanted to get on the road. But after running through everything AGAIN with the NP, he went out and discussed things with Dr. Neal. So Dr. Neal is the leading expert on Peritoneal Mesothelioma. He was quite honest and straightforward that there is no cure and the best they can do is lengthen his life with the chemo and the Hipec if he’s eligible. I appreciated his candor. He talked about lots of other things but the main jist is 3-4 rounds chemo. Hopefully getting the tumors smaller and stabilized. He certainly wasn’t a warm and fuzzy kind of guy but more to the point. I liked him for that though especially when he said, it doesn’t matter where it came from the point is to go from here to help you live longer. He sees mesothelioma patients all the time so I guess he’d know.

So then we left feeling positive for the most part. I mean there is going to be some difficult times ahead but that’s then.

So then came the worst drive of my life home and I’m not kidding. But we got home safely at least.

Today, B has to go pick up about a zillion prescriptions. One of the prescriptions has a huge copay and we said no way are we bankrupting ourselves for this, so the patient advocate is filling out something for the financial aid? or grant? I ‘m not sure what, but I know we’re not doing it.

Today is just a regroup day and plan out next week with Barclay’s first chemo on Wednesday.

Thankful Thursday

Posted in California, camping, cancer, husband, Lake tahoe by

First off, we had a very successful doctor appt with the UCD lung cancer specialist. Even though Barclay does not have mesothelioma in his lungs but in his peritoneum it is treated the same way. She spent a whole hour with us going over all his scans etc. She is very proactive and scheduled another Pet scan and put in for chemo to start once approved by insurance.

She said that we should wait to see what the Stanford specialist says about everything but have the other in place. I really liked her and her approach. Very approachable and down to earth and incredibly smart.

I’m grateful we only have 2 weeks till we go to Stanford although it seems like a long time to wait.

I’m grateful for our lovely cooler weather and it’s just so nice.

I’m sad we have to cancel Tahoe but there’s not any way to go up that week since we’ll be in Palo Alto Thursday and Friday. I’m sad about it but we just aren’t in a position to go up for 2 nights and then come home. Hopefully, there will be another trip.

I’m grateful I had a good day with infusion and then going to the gym and library. Infusion was busy and I have so much respect for the nurses that have to take care of 5 patients at a time. They are super heroes for sure.