It has been a LONG week.
We made it down to UCD fine even with traffic and the endoscopy went fine too. No problems with the prostate. He just has an enlarged bladder and does need to catheterize at least once a day. I guess if that’s the worse, it’s not so bad.
Yesterday though was a nightmare day.
- first we got a letter stating AAA was canceling our house insurance because of fire dangers in California. Great. Now we will have to find a new insurer and it’s bound to be A LOT more expensive.
- Then we get a letter actually 2 letters from the Cobra people for B’s insurance. We owe $710 per month. I thought we’d already had paid the first two months. I called and NOPE that was not to them. Great, more money out the window.
- I called the dedicated hotline for employees and said we’d paid the $1200. So just this afternoon she called back and said NOPE, that was for June and July when the company transitioned to the new insurance. I looked at the paystub and she was right. Nothing was taken out. Great:(
- Then on a positive note and money. B got his LLS grant approved for MDS and they will reimburse him the first amount of the cobra just covering him. so we should get that and it’ll help. We will submit the amount for the second month next week.
- Then I’m at the Sutter Medical site getting ready to pay the installment and I see another whole set of charges. WTF!!!!! So I call Sutter and she says oh they said (UHC) he wasn’t covered for those dates. By this time I was seeing fire and smoke was coming out of my ears. I then called UHC and the VERY nice rep says let me check. She checks and says clearly there was some wrong coding as he was covered. Give me a F#@king Break.
- Let see, I think that’s everything. But there could be more I’m blocking out.
Well, I’m exhausted from it all. Too much paperwork, money stuff, and confusion. I think I see the wine bottle waiting for me.
A nice Sunday morning with cooler temperatures.
Getting ready to do the bedroom zone.
Plus its sheet day.
Yesterday I did a Walmart grocery pick up. I don’t shop Walmart but was interested in the pickup and I had a $10 off code. I bought quite a few organic items and them some pantry stuff I wanted. I was surprised at how easy it was and I didn’t have to go into the store. I’m not sure I would do it a lot but I have to say the prices were quite a bit less than Safeway. Organic Valley milk was almost $2.00 less than Safeway. So were the Morningstar items. So those are big savings. I also went to our little organic farm down the road and got $20 worth of veggies. The corn was excellent.
I’ll have to see how I feel about it over the next week.
I was able to book a night at Nevada Beach for B’s birthday. We may or may not take the tent trailer. Our old van can be used to sleep in so that’s an easier option. We found a nice 2017 Hummingbird RV by Jayco for a terrific price but it’s about 2 hours away. We were pretty gung ho about it but then backed off. I think since we really don’t have other camping plans this year we should save our money till next spring. It was a great price though. If we could see one locally it might make a difference.
It’s a gym day too and that’s it. Don’t need any groceries for a change.
The coming week is busy with 3 days of appts for B. We’ll get thru. After this week we should be on schedule for every 2 weeks. But there’s also my doctor appt and his BMB early September so that will add some extra driving days. My daughter isn’t working yet so she’ll help with some appts which will be appreciated.
My labs should be in tomorrow. I’m guessing they went up and really there isn’t any more downward trends. So the question will when do we start Velcade again. Since my doctor is very conservative I may have to say I want to start when my Kappa light chains go to 100. It’s hard to know if I’m asymptomatic. But if it’s going the way it is it still may be a while. I went from 19.7 to 22.? to 25.? to ??? So 3 points a time. That’s every 6 weeks. The ratio at 2.33 so that’s above the high normal of 1.65
If I could hold off till next year, B will be in good shape and hopefully not need any interventions.
Who knows? Right?
Not sure I have 5 things as nothing much is going on.
Let’s see…. My daughter is taking B down to the UCD med center pharmacy since we forgot his pills on Tuesday. Kinda a bummer since that’s all we needed. Then they are going to Costco to pick up a few things. B is actually going in but staying away from people but that’s a first. Then they are going over to Celestino’s to get a pizza for dinner. Yummm.
I going to the gym just to do weights.
Oh, I didn’t update the rib Xrays. So as I mentioned, I had really intense rib pain about 2 weeks ago. I was quite concerned as it felt like in the ‘old’ days of my Myeloma rib fractures. Fortunately, my doctor is very responsive and ordered x rays. So it showed no acute fractures but ‘chronic bilateral fractures’. In other words the ‘old ones’. SO my guess is I pulled muscle around the old fractures and that was the intense pain. Also, good news is that it seems to be almost gone. But I’m still being careful at the gym and only doing very light weights.
We’ve been walking every morning and it’s definitely darker each day. Or the sun is coming up later:)
Barclay and Sachi finished repairing the dishwasher so that’s very exciting!!!! We now have a working dishwasher again and the part was just under $200. So better than buying a new one.
Both of them, together, finished the cement step outside the front door. As I mentioned, we had hoped to put a deck out there to match the front door level but that would have cost quite a bit, so B came up with the idea of expanding the cement step and leveling the unevenness of the pavers that were there. ( kinda hard to explain but it was not good for ‘older ‘(us) people to step out onto uneven pavers.)
Next, I ordered the 2 windows to replace the ones in the front entryway. They had whatever it’s called when the dual panes get cloudy in between and there is nothing you can do. So it’s been on our list for a while. Now it’ll take a month to get done but they are at least ordered.
That’s it for now.
Yesterday we went to clinic and everything looks good for Barclay. Nothing new or unusual. One of his anti-rejection drugs has been hard to regulate and its number was up again, but the doctor said to keep on the same dose. Actually, his energy level is noticeably increased and his overall demeanor is more present!!! He is now at almost day 80post transplant.
From there we went to Corti Bros. and I got some French prosciutto and some steak that ‘Mike’ the butcher recommended for kabobs. So that was really fun.
Then we hit up Trader Joes for some more groceries. This is the TJ’s near UCD med center in the beautiful Tahoe Park area. It’s a really nice store. So taking away the 2 bottles of French wine I bought I came in at $90. So my grocery budget of $125 for the week is about $20 over. Not too bad.
Here’s the birthday boy!!! He didn’t get his height from his father that’s for sure!!!
Unfortunately, we walked out of clinic and totally forgot to get the prescriptions. So, my daughter or I will need to drive down since he doesn’t have enough to get to next Tuesday. Bummer, but I do need toilet paper at Costco so I/she can do that too.
Today is my sweet boys birthday. 25 years ago he came into this world. What an absolute joy he was.!!! He’s a fine young man. Very talented and handsome too!!! So I’m doing BBQ chicken and those steak kabobs. For the veggie, I’ll make tofu kabobs with veggies.
I’m planning on going to the gym this morning and then the bank.
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!
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!
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.