I hope for all mothers out there, the best day it can be!!
Being a mom has been the best thing that has happened to me in my life. I had my children later than many (33, and 42) but each one was a gift and I loved almost every minute. (I’m sure there have been a few minutes that I wanted to scream!)
But overall, it has been wonderful and I have two really wonderful children that are smart, kind, and really talented!!
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.
This our Cecil Brunner rose all out for Mothers day!!
I received my Medicare card which now reflects Part A and Part B.
I had gone into the SS office ( because you have to go in, in order to show them the official letter from HR that shows you have been covered by your spouse’s employer) and then you don’t have the penalty.
So then I called AARP and signed up for their Part F because I want the most coverage and Plan F is the most comprehensive. I also signed up for the Walgreens RX for my prescriptions. Since I have been on what they call Tier 5 drugs in the past I want sure what to do. But after talking with the person we decided to go with this one as the 3 prescriptions I have are low cost. If I ever need to go back on Revlimid let’s say, I would just have to accept the initial cost and then it would go to catastrophic since it’s so expensive. I doubt that would be the way my doctor goes as we have discussed when I relapse, I’ll go back on Velcade which is given at the infusion center and therefore covered by Part B of Medicare.
I’m still a little nervous about it all and haven’t gotten the paperwork yet from AARP but I should soon.
Next, I need to sign up for the AARP Delta dental so I can continue with the dentist practice I’ve had for almost 40 years. I cannot understand why Medicare does not include a dental part. It seems so odd to me that under my husband’s group plan everything (almost) was covered.
Anyway, I feel good I finally figured it out and now I’m officially ‘old”…..
Well, it has been a good week overall.
We are very fortunate that someone is going to lend us an RV so we can park at the Kiwanis house after B is released from the hospital. We are very grateful as it is a beautiful RV. So at least that part of everything is set up. Plus it keeps us out of a hotel and that is great.
We will need to buy a few things as we don’t want to impact the owner’s stuff too much. We’re thinking our own sheets and some outside lawn chairs.
B’s CT scan was all good except for some more bladder stuff but he went and had a urine test and that was all good so who knows what that is. So all the tests are good.
We meet the transplant doctor this week to finalize everything. I think I’ll go to the coop first and then we can meet the doctor.
Our weather has been beautiful and continues to be so.
May is really one of the loveliest months here in Northern California.
We’re out early again today for B to get platelets. I went to the gym and now I’m at Flour Garden writing this and drinking a coffee. When we get home I’m planning on starting the kitchen zone and do a few things maybe not all the kitchen zone. It’s also sheet day.
I finished reading the Madame chic books( the first 2) and I enjoyed them. I don’t think they’re for everyone and some people probably wouldn’t like them at all. I liked the inside look at Paris and the culture. I’ve been trying to find them at the used bookstore for about 5 years with no luck so I finally bought them off amazon.
Next Sunday is Mother’s day which I always get breakfast made. But we’re also going to celebrate our son’s graduation from CSU Sacramento and our daughters birthday since B will be in the hospital for both. We’re giving Z money and S will get a new Kindle that she wanted.
Dinner is street tacos since it’s Cinco de Mayo!! Plus some guacamole.
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.