As 2019 comes to a close

It has been a year of highs and lows.

Lots of things were awful with B’s diagnosis and then being transfusion dependent. Lots of chemo visits weekly. But in spite of that, there have some great things. His brother was a 10/10 match for the BMT and that was amazing.

Being at UCD med center in the BMT unit for a month was hard, very hard, but it all went way better than expected. Staying at the Kiwanis in our friends RV was also great and made the whole experience of having to be there almost 3 weeks delightful. Being able to be just minutes from the clinic made it all worth it.

Recovery and gaining strength and energy back has been slow but sure. B is doing amazing and he is almost 7 months post-transplant.

There has been no major graft vs host although he must remain vigilant as that can happen even down the road.  Now he is tapering off immunosuppressants and that means less prescriptions. He will still need his vaccinations sometime next year.

So the year really was a mixed bag of emotions but overall I feel very positive about it. We did fine financially with the extra GoFund Me and the SDI. This week will be his last SDI and I am totally grateful to have had NOT to worry about money. After my transplant in 2006 and that following year, we were in serious,serious debt and it was awful. There were no GoFundME things or networks to receive financial help. I did have 2 friends that were very generous and that was a blessing.

At the end of this year, I feel grateful for my health and my children’s health. Both of my children have excellent jobs that they earned this year.

B will also officially retire as going back to full time just isn’t going to work for him. I will miss the paychecks and being able to travel with him, but honestly, he is 69 and with everything that has happened, life is just too short to go back to a job even if it’s only for another year. Who knows what will happen and he has this chance to retire. Social Security will be tough but hey, so what! We have struggled before and made it and if we can only do so much then so be it. Actually, I’m just grateful we have the little we will have coming in as it will cover our basics.

WE didn’t do any traveling and that was okay. We are planning something once a month for  2020. Next month we are planning an overnight to Chico where B has a free room at one of the nicer hotels downtown. We are planning to have dinner at a place I’ve wanted to go forever called the Red Tavern. I can’t remember where I read about it over 5 years ago, but it’s supposed to one of the best restaurants around.

House wise, we didn’t do anything major except outside and tree removal.  We did replace two windows and they look great. Next year we will replace a few more windows in the bathroom and kitchen and my daughter’s room as well. Next year, we hope to work on the kitchen and do a minor remodel( mostly the sink and counter as it is 25 years old this summer and the sink connections are pretty rusty.

So life keeps on keeping on and it really is a wonderful life.

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.

 

Saturday stuff

It has been quite the week!! We had the transplant the morning of the 23rd and it is( for those who have been thru an SCT) fairly uneventful. Even anti-climatic except it is the beginning of a new life which is pretty monumental. But it is just a drip for however many hours. Mine was very short ( an auto) B’s was almost 4 hours!!

Well, we are now on day +2 and he’s been in for 9 days. So soon he will go down to WBC of 0 and then it’s a waiting game. At this point is when you start to feel awful, no appetite, diarrhea, and absolutely NO energy. Because his is an allo, the risk of infection and graft vs host is much more present.

Today I’m going down with my son and then tomorrow I’ll take my brother if B is up for it. He said he was starting to not feel great so visitors are usually the last thing you want.

On a different note, I’m working on taking a few things out of the bedroom and closet. I have some empty bins I need to put in the laundry room and  I wanted to move a plant to a different spot. I’d like to take out the suitcase I have a plant on but I’m not sure where I’d put it. It has mementos for both of my children like wood toys and other things.

I’ll just have to look at it more closely. I thought I’d like to mount the wood crate on the wall and then that would eliminate the need for the suitcase which the wood crate is on top of.  That has a plant and a salt lamp on it.

It’s cloudy again today and cool. Tomorrow it’s suppose to rain:( again.

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.