Friday things

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!

Early morning

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!

 

Things are going great!!

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.

Simple Sunday

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.

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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.

 

 

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.

 

 

 

Some good news

We got a letter yesterday saying the transplant has been approved by insurance and it’s a go. Also, the nurse coordinator got a hold of the donor brother and it looks like it may all be done in NYC… so very good news.  It looks like at this point his pre-testing will happen soon and then collection on the 15 of May. That means Barclay will be going in right around then. So good news and let’s get this rolling. Not that it’s like a vacation and fun but just something you want to be over.

Also, his last labs show his WBC at 4.3 NORMAL!!!!! how great is that. Not sure it’ll stay there but let’s hope.

So yesterday was really long sitting in the dentist chair for the crown and the filling.  But it’s done. Then I still need the scan for my Invisalign retainer.  The dentist also said the filling on the crown was deep and could eventually need a root canal. ANd I’m thinking to myself, ” I’ll never do that again” that was one of the worst dental things I’ve had and then it still ended up in surgery to be pulled.  I’ll just wait and see.

Today is beautiful out. I’m going to the gym and then tackle the chest freezer. Down at the bottom, I found some salmon from last summer so I’d better use that up. Also some corn I’d frozen. So I’d better get out there and see what else is there.

Today is koffee klatch day but I’m skipping and just coming home to do the above mentioned and some outside chores.

I just finished reading Flylady’s new book, The  C.H.A.O.S cure.   It was okay and had some new stuff but mostly a rehash of her stuff. Still, I enjoyed it.

Dinner is something from the freezer.

 

Simple Sunday

Well, it is now that I’ m back from my monthly Costco haul.

I put everything away and put stuff in the freezer. We should be good to go for the rest to the month.

Then I moved into the kitchen zone and got that done except for the floor which I asked my daughter to do.

So, I ‘ve got the rest of the day to be outside or read or whatever.

Tomorrow B has his bone marrow biopsy with the new transplant doctor.  He’ll need to take a sedative so he’ll be drowsy probably.  Then Tuesday he has another test and then Thursday. My daughter will alternate with me since she’s still off from work. That helps a great deal.

Tonight we’re having artichokes( I bought at Costco) and some fish/tofu. Nothing too fancy.

It’s really lovely out almost 70 degrees.

Don’t forget to comment in my previous blog if you’re interested in the ‘Lightly” book.