Day – 2 and counting…

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Well, he is still smiling and the hair is still there. He did get the Melphalan yesterday so it’s only a matter of time now that he’ll start to feel awful.

He gets another dose today as well.

But he is eating well for now which is great.

I’m still working on the insurance stuff with him going on Cobra and waiting for a callback.

They did send him an email but he can’t seem to find it right now.  But I’ll follow up tomorrow if I don’t get a callback today.

I’m heading down this morning after I do a few things.  It’s just me this morning and then tomorrow Sachi will go down. Tomorrow is D -1 so almost there.

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.

 

Day -4 and counting

Today went well.

My son, Zephyr, and I went down @ 10 am, and it was nice. No traffic backed up.

Today was his graduation day from Sacramento State but he wasn’t planning on going.

he spent the entire time setting up a Spotify account for his Dad and Hulu. So entertainment wise he’ll have lots to do. He also ordered a wifi speaker from Best Buy and we will pick it up on the way home.

He was in good spirits since chemo doesn’t really kick in for about a week.

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We’re heading down around 10 am again and will stay for a while. Tomorrow I’ll go alone as we need to call @ the Health care changes since open enrollment starts tomorrow and we’re not sure how that will work. Someone is supposed to call us but I’m not holding my breath and I’ll check back with them.

A change in the weather.

Over the next two weeks, it looks like rain and cool temperatures. I get so used to it being like 75 or high ’70’s that I forget its still only May.

Still, we usually have all the coolers in the windows by now.  B only put the living room one in and then our son or daughter will have to do the rest when B is in the hospital. But it looks like it’s going to stay cool all the way to Memorial Day. Our yard does look it’s best this time of year with all the roses, and perennials blooming.

A couple of projects are done. One was to paint the french doors( that we got free many years ago) Behr’s Ultra White. The hardest part was taping all the squares. Still, after 2 coats it looks fresh and clean. I must have painted one set before as the second coat on that set looks better than the other doors. But after 2 coats I was done.

Next year I can do a fresh up. Then B fixed one of the sunroom windows that actually is on a hinge to open for circulation. But it had some water damage and didn’t open so he took it off and rehung it.  Cool!!

We also touched up the bathroom paint and it looks good enough I can hold off painting the whole thing till next year.  In the past, I’ve tried to paint each room or a few rooms on rotation.  But not this year.  One thing though, going to a whole house inside color ( Benjamin Moores Simple white has been great.

Today B has a CT scan of his sinuses that they forgot to do in the last CT scan.( ah really?? forgot??? Then we have a load to take to the food bank.

And we’re on count down to Friday:(

Friday things

So we are ready to go. B signed the consent forms yesterday and admission is next Friday. That’s only one week away. After listening for 45 minutes of every terrible thing that could go wrong we signed.

He will go in at 9am admissions, have a main line put in or a pic line. At this point, it looks like a pic line since his platelets still have not gone over 50. They hover in the ’20s and then drop into the low teens and that is too low for surgery for the mainline catheter.

Then Friday is D -5 for chemo, down to Day 0 which is transplant.  The chemo is supposed to be well tolerated but since I had melphalan  I’m not too sure I agree with that. There are two other chemos involved as well.

So, it begins. Probably the recovery will be the worst part with fatigue and the constant threat of graft vs host disease.

We stopped in the co-op for a quick shop and it was slightly more expensive than I’m used to I may have to use it to buy the things that are better priced such as bulk items. We did have a lovely lunch though and got to relax before heading over to UCD med center.

We got in another co-pay bill for $1680 that’s for all his transfusions. I’ll call this morning to make arrangements for payments. We paid off one and so with this one we’ll have two. All together that will use @ $4500 of the GFM but I’m stretching it out. Actually, I think it’s more like $5000 but still, over time it’s doable. ( As long as too much more doesn’t show up.) But we still have the transplant co-pay which is still unknown but we know it’s about $6000.

Well, I’m just not going to worry about it now.

Today, I’m off to get my labs for my Thyroid as I’m overdue. Then to pick up my new glasses that hopefully have been corrected. From there I may hit the gym and I need to go to the bank.  Yesterday was super long and so I usually drag the next day.

I’m hoping to not go anywhere tomorrow or Sunday and I’m willing to give up my Sunday workout just to stay home. I’ll be driving to Sacramento almost every day starting next week.

UNADJUSTEDNONRAW_thumb_374.jpg This our Cecil Brunner rose all out for Mothers day!!

 

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!!