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!
We had another big earthquake in California last night. We didn’t feel it here but some people in Sacramento did. 7.1 is a big quake. Scientists are saying there could be another within the week or at the least aftershocks. We have an emergency kit in place and directions. Usually, up here it’s fires but who knows?
Mother Earth is not happy!!
Out weather continues to be quite lovely with yesterday being a little warm at 94 degrees.
I’ve been going out to the pool and floating and it’s been nice. My daughter has done a great job keeping the pool crystal clear as B can’t do it yet. Maybe by the end of summer, he’ll be able to take over.
Today, I’m going to the gym and then straight home. Not sure what I’ll do later. I started doing some knitting again and it’s a good meditative thing to do.
Next week we have 3 appts for B including the MRI for his leg.
The doctor is reducing one of his anti-rejection drugs so that’s like 6 fewer pills a day and a few others. He will be of the one anti-rejection drug completely next week. That’s a good thing!!
I need to meal plan for the week and I’d like to use a bunch of things from the freezer and do a clean out. I made homemade pizza last night and it was perfecto!! I did use my instant pot yesterday for hardboiled eggs. It is an easy way to make them for sure.
I’m in the kitchen zone next week, so I’ll start that Sunday as it is my biggest zone.
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.
We need to be out by 6:30 so we can get his labs by 8:00 am in Sacramento and then clinic is at 8:30am with the NP. I think we will be out quicker this time.
Speaking of labs my numbers came back with another increase:( So Kappa is at 25. Lambda went down to 11.3 but with that, the ratio went to 2.25. It’s still not alarming numbers and only slightly over high normal but it is a trend for sure. High normal for the ratio is 1.65 so .6 over. I’m sure my doctor is not worried at this point and I see him next week so we can talk.
Anyway, this is a good lesson for me to not obsess and just know treatment will resume at some point. I’m actually proud of myself for not being too nuts about it. I guess that’s a good thing?
After clinic, I’m going to the gourmet store called Corti brothers. When we first moved to California in 1975, we would shop at the other Corti bros location. I had just started graduate school at Sac State and we practically lived in Sacramento. We were living in Foresthill(the same area we’re in today but not the same direction) and I was driving down 2-3 times a week. Back then there was little traffic on I-80 at night and during the morning. Now any time of day I -80 is crazy. Anyway back to Corti Bros. So when I was at Kiwanis house and shopping over at Save Mart, I looked over and saw the sign for Corti Bros. I wasn’t planning to go in till the person who owns the RV said ‘Hey, you should go into Corti Bros. ” So I did and first, the deli is amazing and I discovered they have the French ham I have always wanted to try. Of course, I thought I’d have to go to France but no, here it was. It was amazing. Since I do love cooking and food, it’s a fun store to look around in. Today, I’m getting some olives from their amazing olive bar and some special burger blend for 4th of July.
All in all, it should be a good day!
It finally feels like things are getting back to some semblance of normal.
It has been busy to some degree and yesterday was a very long clinic visit with the doctor. There are a few things needing attention. His blood pressure is still low and seems to drop when he stands. The doctor thinks this is the Flomax, but since he needs that to get the peeing going the dose cant be lowered yet. So he needs to be extra careful getting up. Then he has a ‘drop foot’ happening in his right foot where it’s kinda lagging. This just started a few days ago. The doctor ordered an MRI asap, but that still is 2 weeks out. It may be a nerve or it may be a rare side effect of the anti-rejection drug, so it needs to be figured out. Well, no one said this would be easy. But overall, it’s all going better than expected.
Today, though, I’m going to do Flylady zone which is the living room. Always an easy zone for me but I may do it a bit deeper especially after the deep cleaning we got from the cleaning lady. Yesterday, I moved all my cookbooks into the LR bookcase as I want o see them together and what doesn’t fit I’ll get rid of. I’m also going to wash the couch covers. I’m guesstimating that I do this about 4 times a year. Since we just had the summer solstice that’s a good time.
I’m also going into the closet pantry and do some tidying up in there. It doesn’t need a lot but some stuff does need to be re-organized.
I’m not going into the gym or town at all today. But tomorrow I will go to Costco as coffee is needed and some other basic things. I’ll go early so as to be home just after my daughter leaves for her job. Someone is supposed to be with B 24/7 but an hour won’t be too bad.
I’m also putting a piece of pork in the slow cooker for pulled pork. I have some corn and I may do a small potato salad. Not sure if I have enough potatoes though.
We just had a nice one-mile walk. Don’t want to do too much yet. The park has been really busy even at 6am. I grumble about it:(
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.
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.
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.