Tag Archives: peritoneal mesothelioma

Monday Morning

Posted in Blood test, California, cancer, husband, peritoneal mesothelomia by

We at least had an ok Sunday.

I didn’t even walk or go to the gym. I think I just needed a total day to recuperate from the ER visit. It’s such a strange world to go into. Even though we have these doctor/medical things, we rarely have experienced ER’s. Thank Goodness, as it was pretty awful. I mean UCD ER is probably one of the top-rated in N Ca but still.

Anyway, the nose bleeds are back which means the platelets are down again. It’s not as bad as last time but he needs to get labs this morning and then call the doctor. Then hopefully schedule him for more platelets tomorrow?? My back up plan is if they want him to go back to ER then my daughter will take him, drop him off and then I’ll go get him when he’s done. I certainly hope it doesn’t come to that but I need a plan.

My guess is he’ll go to infusion for the platelets but it does depend on how far they dropped.

I’m off to get my labs this morning too, so once again my daughter will have to drive B to the lab. Then I’m going to drive to Roseville and go to the gym, library, and then home. I need to go to the bank for my LLS insurance printout but I can do that after everything. My insurance is covered by LLS and it’s a lot of money( to us) so that needs to be submitted a certain way to get paid.

My son came up yesterday and visited. I think he’s pretty stressed about his Dad. He’s taking on all the big projects with my daughter helping. So he did all the outside trim on the bathroom window that hadn’t been done. And then he even painted the wood.

My daughter will be fixing the drainage under the bathroom ( in the crawl space) so water doesn’t pool in there this winter. There’s always so much to do this time of year and without B doing it, it really does add up.

It’s a really hard time right now and we can only hope for the best.

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.

Simple Sunday

Posted in Blood test, California, cancer, cooking, Death, Walking by

A wonderful walk this morning. Cool air and only us. Whenever I’m on DEX I can walk a little more since Dex masks arthritis. So we did 2 miles.

Of course, now Dex will wear off and I’ll see how my knee is 🙂

I decided to go to the gym since I don’t have any major cooking to do or house stuff. It was pretty mellow with only a few people.

For dinner last night I made up the honey garlic tofu again with jasmine rice and a salad. It was just as delicious. Tonight, I’m going to try the frozen tofu and bread it and make a tofu parmesan. This block I cut horizontally. I have leftover Rao’s sauce and mozzarella to use.

This week I have labs, swim, a gym time and that’s it unless B gets a call from UCD. If he does we will take the appointment as we’d like to get the chemo or whatever it’s going to be going.

So after the team of doctors met to discuss his case, they decided to do more testing on the first biopsied tissue, and the answer was revealed. Unfortunately, it is very rare, Peritoneal Mesothelioma. It knocked us for a loop. He’s never been around asbestos but apparently, there can be other causes? what, I’m not sure. The doctor who was doing this diagnosis has also referred him to Stanford. This is a pretty grim diagnosis and incurable so facing us is what time do we have. It’s hard to get this processed and I’m sure we will be going through a lot of emotions. I tend to freeze up emotionally and/or shut down so I’ll need to work on that. Well, at least we know.

That’s all I’ve got today.