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!
I have been wanting to write a post about the gift of life that ALLO donors give to their recipients. Many do not even know the person they are giving their stem cells to. It is a truly selfless act of both courage and bravery.
In our case, Barclay’s donor was his younger brother. RPN. Now there is some history here, so I will give a few details. Not a lot of details but some, as it’s complicated.
We have had little or no contact with either of his brothers for almost 20 years. This was mutual. The gist is there was an inheritance involved that was very substantial and the two brothers were included and Barclay was not. They stood by the monetary decision and did not offer to make it more equitable. A lot of angry words were said and that’s that.
RPN, gave his brother the gift of life, a chance to have some good years ahead and that is priceless. So I can forgive the past simply because of this single act of sacrifice. What RPN did was courageous and he did not hesitate. This act was, I think, transformative for me and Barclay on many levels even the cellular one!!!!
The past is the past and I can forgive and move on.
Life is a strange journey and healing the past is always a good thing.
We want to live for Now and what has happened is just part of our history that makes us who we are.
On a bigger platform, to all the people that have been ALLO donors, you are truly heroes and thank you!
It has been a lovely couple of days just doing ‘normal’ stuff around the house and getting back to some daily routines.
I’m back going to the gym and my muscles can feel it. Especially doing weights. I’m also trying to keep my steps or walking over 6,000 a day. My legs can feel that too. But it is necessary.
I’m also back to menu planning and cooking. The other day I did a lovely roast chicken and also a crock pot pulled pork. So leftovers are in the fridge ready to be used.
Thursday I went to Costco and spent a lot but much of it was bulk coffee( 2 2 1/2 lbs bags), toilet paper, paper towels, lots of non-food items.
My big splurge was buying the Dyson animal on sale. I had decided a while back that my old vacuum, a mighty mite, was going to need to be replaced, but what? This vacuum is handheld and cordless and hangs on the wall. That’s a big plus, as our closet is small enough and the vacuum sits on the floor. I’ve used it 3 times and love it. But since I bought it from Costco if in a few months I don’t love it, I will return it.
I’ve been reading a great deal which started down at the Kiwanis house. I’m loving the MCBeaton books and interestingly enough they are not cheap, even on Amazon. The two I found were from the clinics waiting rooms where there are some bookshelves of books for patients. I’ve taken a few and have a nice stack to return. Oh yeah, the Kiwanis house had multiple shelves of paperbacks and I found some good ones there too. I might stop in and bring some there too.
Next week is already filled with doctor appts. Tuesday, my daughter will take B down for his labs and clinic. Wednesday I see my doctor and I didn’t want to have to drive two days in a row.yAll in all, life feels like it’s almost back to ‘normal’:) Probably, that won’t be really true for a long time but at least it is better than B getting transfusions and platelets every few days.
First things first, TODAY is my 14th year since diagnosis. I was standing in our driveway and Barclay took the phone call from the awful doctor. Doesn’t matter, here I am!!!! So onward. Next week I get my labs in the middle of all this and we’ll see what my numbers do. Up or down??? I’ll deal with it one way or another.
It’s the weekend and B has no labs till Monday so we can relax. I’m heading over to Ikea as they charged me for 2 paring knives but I only bought one. I’m not sure how that will work but I’ll try. Plus I bought this darling fold out bed for our daughter to sleep on here but then discovered that the couch does fold down to a bed. Okay, Barclay figured it out I just kinda looked at it and didn’t connect the dots. Oh, well. So I will return that(insert sad face as it’s really cute). But I don’t need it now and then at home I’d have to store it so, decision made.
It’s all going really well and so far and now it’s just waiting till we can go home. Although next week is labs one day, clinic the next and then repeat so going home isn’t too feasible.
Tomorrow both kids are coming down so we can have Fathers day here. They are doing a great job keeping things going at home. Which, surprisingly, is a lot of work mostly due to having pets, chickens and large garden areas.
We are off for a small walk and BTW Sacramento is having a serious cool down so we are VERY comfortable…. Todays high is only going to be 84 so really nice.
Well, the brothers stem cells are here and transplant will take place this morning.
It was scheduled for 2am last night but there was a delay for some reason.
But he is ready to go!! The melphalan really hasn’t kicked in yet but should by this weekend. Also, the nurse said a fever is common when engraftment takes hold so we can expect that too.
They changed his room to a more isolated area with double entryways. But it really is a lovely room. It’s large with a table and 2 chairs, a lounge chair, and a lovely view. The windows are clean as opposed to the other room where the window was visibly dirty on the outside.
He still has his hair probably till next week when it will need to be shaved. But all in all, doing well.
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.
Here we go….
Hair today, not too much longer:(