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!!

 

 

Friday stuff

So yesterday was another test for B. This was the cardio stress test. Today it’s an EKG and x rays. So all that’s left is the CT scan in May and he’ll be ready to go to transplant.

Yesterday I drove and my daughter came along and we went to Whole Foods and then Barnes and Noble. Barnes and Noble is such a waste. It is so expensive. I was checking out cookbooks etc and they are full retail price as opposed to Amazon where it’s usually half that.  It was nice to look at the books but I want interested in buying.

Then since B hadn’t eaten we went out for brunch and it was really nice to do. I’m definitely a Scrooge when it comes to eating out but this time I was okay with the bill and the food was good. Not great but good.

So then today I’m going to forge forward to Social Security and be prepared to wait.  I figure 2-3 hours all said and done. After that, I may go to the gym but it kinda depends on how I feel.

My food budget is pretty much used up for April so I need to use all of what I have in the refrigerator and freezer. Tonight I ‘ll make a homemade pizza.  If anything, I’ll need salad stuff but right now I’m set for the next week.

 

Our weather looks really nice this next week with temperatures in the 70’s which I am so ready for. All our grasses are growing like crazy so the mower will be going none stop. A lot of this is seasonal grass, not lawns. We only have 2 small areas of lawn we keep green.

Some things have been planted but it’s too early for tomatoes, etc.  I think my daughter(the gardener) did plant lettuce and radishes so we’ll see how they do.

Next week looks open except me trying to get this crown done. I’m not looking forward to that but since it seems dental with Medicare is non-existent I better do it now. Still, that’s another copay but whatcha going to do?

 

 

Simple Sunday or is it??

Well, it is going to be a lovely sunny day so I’m going to enjoy that. Our yard is looking so pretty with daffodilsUNADJUSTEDNONRAW_thumb_367.jpg, and the lawns turning bright green. Here’s the flowering cherry which is the prettiest bloom I’ve seen in a few years. Last year these trees were hit with a late frost and all the blooms died.

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In the far background you can see some of the hoarders stuff across the fence! More daffodils.

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Today is a gym day and B has platelets. I’m going to drop him off and then go over to the gym.

Sunday is sheet day so I’m doing those and since it’s so nice out, I thought I’d do our comforter as well.

There’s not a lot on the agenda for today so I guess that does make it a simple day.

I’m reading a new release in ‘home organizing’ called’The Home Edit’. 91xVeNilguL._AC_UL436_.jpg It’s nicely presented with lovely pictures. So far I’ve gleaned a few ideas about organizing stuff. Nice book, if you’re needing some help putting things together. I’m going to pull everything out of the refrigerator today and give it a good clean.

This week we are in the Entryway, dining room(which we don’t really have) and porches. I’m planning to wash windows sometime this week as well.

Update:

 

We went to town. I went to the gym and then was going to pick B up but he had a reaction(second time) to the platelets. So he had to stay and then they sent him to the ER.

He’s home now and all seems ok.

Dinner is roast chicken.