Friday things

We’re off to Sacramento for Clinic and Labs. B still has diarrhea going on but the Predisone and Imodium should help. We think this is a small Graft vs Host going on since he is now off one of the anti-rejection drugs, Mycophenolate.  At least it isn’t getting worse. So, all in all, that’s good.

I had thought to stop at Costco on the way home and I still may do that. It kinda depends on how long we’re at clinic. I really need to get my receipt in there as I was charged twice for 2 things. That’s always awkward as I feel like ‘will they believe me’?? But, like I said, it depends on how I feel and what time we leave Sacto. B just has to sit in the car, so that is something to consider too.

I filled out my LLS reimbursement form using SS for the first time. I probably did it wrong and they’ll kick it back. I found, after I submitted, their list of what was needed and I didn’t copy the cards just the payments, so that’s probably what they’ll need. They can be quite fussy about it but then again, they are giving me money, so I guess it needs to be done to the letter.  I’ll just wait and see 😦

I started emptying the tent trailer and put some things in the barn. I’d like to completely empty it and wipe it down and then evaluate its condition. B likes to take his naps out there so I don’t think we’ll close it completely down.

Well, I guess it’s time to get going!

Weekend stuff

We had another big earthquake in California last night. We didn’t feel it here but some people in Sacramento did.  7.1 is a big quake. Scientists are saying there could be another within the week or at the least aftershocks.  We have an emergency kit in place and directions. Usually, up here it’s fires but who knows?

Mother Earth is not happy!!

Out weather continues to be quite lovely with yesterday being a little warm at 94 degrees.

I’ve been going out to the pool and floating and it’s been nice. My daughter has done a great job keeping the pool crystal clear as B can’t do it yet. Maybe by the end of summer, he’ll be able to take over.

Today, I’m going to the gym and then straight home. Not sure what I’ll do later. I started doing some knitting again and it’s a good meditative thing to do.

Next week we have 3 appts for B including the MRI for his leg.

The doctor is reducing one of his anti-rejection drugs so that’s like 6 fewer pills a day and a few others. He will be of the one anti-rejection drug completely next week. That’s a good thing!!

I need to meal plan for the week and I’d like to use a bunch of things from the freezer and do a clean out. I made homemade pizza last night and it was perfecto!! I did use my instant pot yesterday for hardboiled eggs. It is an easy way to make them for sure.

I’m in the kitchen zone next week, so I’ll start that Sunday as it is my biggest zone.

WE ARE HOME!!!!

Yesterday, Barclay had the okay to leave the Kiwanis and go home!! It was very exciting. We cleaned out the RV and had most everything ready to go for after the clinic appt.

He had to have a chimeric blood test which will tell them how many cells are the donors and how many are his. We won’t know that for about 2 weeks. But that too is exciting.

When we left Sacramento it was a pleasant 80 or so.

Home is all green and bursting with flowers so it was lovely and everything in the house looked great.

UNADJUSTEDNONRAW_thumb_385.jpg Doesn’t he look great? ????

So it’s home to rest and heal.

We are back in Sacramento on Tuesday and then again on Friday. Both appts are early so we may hit morning traffic but going home should be fine.

There are still all kinds of things we need to watch out for but I’m sure we will handle whatever comes up.

All total he was gone 37 days. 26 in the hospital and 11 at the Kiwanis.  Overall, I think that’s a great record. I’ve read about transplants for people that can go 60-90 days in. So we are very lucky.

We walked this morning a little over a mile and later we will walk around the driveway a few times.

Quick update

Today the RV gets moved to the Kiwanis House Rv area. I’m excited in a way as it will reduce driving and simplify things for now.

On absolutely incredible news, Barclay is engrafting and his numbers are going up rapidly.  He still feels lousy and of course, the real fatigue is about to hit him but at least the numbers are doing what they are supposed to.

The doctor indicated he may be released as soon as this weekend which is way ahead of what I thought so that too is incredible. Then it will be clinic visits daily then it will taper off and I’m guessing his doctor will release him to come home. It’s still a long road but there is light at the end of the tunnel.

I’m trying to get everything packed up this morning including some food so I don’t need to go out later in Sacto to get something. Tomorrow I was planning to go to the Trader Joes nearby and get a few things.IMG_0636

The hat is too cover up his now bald head. His hair starting coming out right on schedule (day 10) and so it was shaved by one of the incredible nurses.

 

Simple Sunday

Today is another trip to the hospital but before I go down I will try and do my Flylady zone.

It’s the bedroom so that is generally not too involved. I did call a house cleaning service to check on a ‘deep’ clean and I’d like an estimate. If it’s reasonable I’ll schedule that for the first week of June.  Since sometime after that we will be down there at the RV spot( I hope).

There’s been a hiccup with that as the owner has had a medical issue come up. I sure hope it can be resolved but it is what it is. And his health comes first. We still have the ACS hotel as back up. We can’t book that though till we know the exact date, so it’s also hurry up and wait.

On another note, my labs came back and I’m not going to lie. It upset me. They went up 4 points out of normal range. 18.4 to 22.4. So 19. 6 is high normal. And the ration went up to 1.69 out of normal range. (1.68 is high normal). so there it is. I’m guessing I’m coming out of remission.  I’m not going to worry too much yet as it’s still a long way to treatment.  It could be 3-4 months maybe longer but clearly, myeloma cells are activating.  It’s fine really. I knew it would happen and I’ve had 3 great years. Still, with everything going on it’ll be another trial. I actually see my oncologist this coming week( yes, I know in the middle of everything else) so I can ask him. He doesn’t get too concerned as the increases have been slow.

Anyway, life goes on, one way or another.

 

Decisions…..

So yesterday was insanely busy.

We had to be out the door at 7:15am to get to the local oncologists’ appt. That went well. Then B had to go get his labs.

Then we decided to go get bagels at our local organic bakery because we were going to head to Sacramento to check out the Kiwanis house and we wanted to AVOID the 8 am traffic. So we relaxed and enjoyed our coffee and bagels.

We had no stops with traffic and got down to UCD med center in 45 minutes. First, we went and toured the Kiwanis housing and as expected the rooms are quite small and the shared kitchen just didn’t do anything for us. BUT, we toured the RV parking and LOVED it.  So there is a possibility of using a friends RV or if we moved quickly buy a used small one that we were planning on doing in the fall anyway.

We asked the social worker to put in the request so at least we have that in place. There’s no guarantee but hopefully, that would be a possibility.

Then while we were there the social worker called and said there may be a problem with B’s brother’s blood something that has an antibody in it so B needed to get a blood test for that ASAP. Fortunately, we were right there so we did that.

Next, we checked out the Marriot and that was crazy expensive even though very nice. There were two nights that the cost increased to $279 a night.  We ruled that out quickly.

Then we headed to the Cannabis place and B got some chocolates since smoking is not allowed with the transplant.

After that, we went to the Sacramento Co-op and joined as I plan to shop there while we’re down there and then even later go once a month. It is a beautiful store and I found a few items like cranberry beans I’ve wanted. ( they’re like pinto beans). Plus they have an olive bar!!

Finally, we headed up Hwy 50 to check out the Extended stay hotel and surprisingly we both thought it was okay even if it was the furthest away. ( 10 minutes or so without stop and go traffic). Not ideal but doable so we’re going to get the referral to the Cancer Society and put that in as a backup plan.

By this time it was close to one and we were pretty wiped out. I came home and took a nap.

We’re hoping there isn’t a problem with the antibody as that would mean back to square one with the National Donor Bank. We should know in a day or two and we see the transplant doctor next week so…

I’m heading out to the koffee klatch to see everyone for the last time probably till the end of summer so that’ll be nice. I think everyone is planning on being there.

Dinner is salad and chicken kabobs( marinated in yogurt). Maybe some grilled tofu too.

 

 

 

A busy week.

Barclay finished his last chemo yesterday and had to have a blood transfusion so it was a long day for him. This was round 5.

We saw the social worker and the Nurse Practioner on Tuesday. The traffic was insane and it took us almost twice as long as it normally would since we hit the 8 am traffic. I won’t be doing that again any time soon.

So the social worker thing was just a repeat of the last one and the NP was informative. The most exciting news was his blasts have gone to 1% from 9 and that is GREAT news.

We are now in the final month before he goes in. The brother is set up with the national bone marrow registry and has the dates set for  Neupogen shots and then the harvest on the apheresis machine. So Barclay will go in 5 days before for chemo and get a Hickman catheter put in.  So we are ready to go!!!

We still are trying to figure out the details on lodging and the best so far is the Kiwanis house which is on the UCD campus. There are individual rooms and bathrooms but the kitchen is shared. Not really my style but it’s a walk away and is only $50 a night. the other option is an Extended stay but it’s about 10 miles away.  So we’ll just have to see. I’m checking Airbnb but they are more like a $100 a night or higher. So I might check out a few and message the owners about a 2-3 week stay.

My oncology appt today was canceled as the doctor was not going to be in. So that was good because I didn’t really feel like driving back down to Sacramento. So I’ll see him in May although  I left him a message that the appt maybe when B is going in so I’d just have to see.

I went to town to get my new glasses but they didn’t fit right so they need to be sent to the lab to have the bridge redone.

Oh well, the prescription is the same so my glasses are fine for now.

Dinner is something my daughter is making so I don’t have to cook!!