Midweek musings

I had a good doctor visit. As I mentioned, my numbers are going up (kappa light chains) but as he said it is slowly going up and I’m a long way to where I started out 3 1/2 years ago at 1010 mg/L kappa light chains. So I’m ok and not panicking. It went up 6 points to 31.7 so an increase. Lambda is in the normal range and looking back at my numbers, Lambda was always in the normal range. The ratio also increased to 2.66 from 2.33 so increase there too. When I went back to when I started Velcade my ratio at it’s highest was 68.25 mg/L so that says something about where I started.

All in all, I’m ok with it for now. It’s always weird to think cancer cells are in your body but one must be positive and philosophical at the same time.

We’re in for cooler temperatures which will be most welcome.

My daughter is drying some cherry tomatoes since we have so many and I really don’t want them to waste. Sundried tomatoes in the winter are nice additions to pasta.

Our last appt is Friday till next week. Driving to Sacramento has been awful with the traffic. Driving home has been a lot easier. I’m guessing with school starting and work there are more people on the freeway.

After next week, we are on a 2-week clinic schedule and that will be very nice.

 

What’s next?

This is a busy week with appt’s almost every day.

Today I have an appt at DMV, yes, the dreaded DMV, to get my license renewed and try and get the real ID. The real ID requires a certified birth certificate and lots of other proof pf residency things. One reason I persisted in the NYC birth certificate debacle is I knew that this was coming. So we’ll see how it goes and I’ll report back.

Tomorrow is clinic and labs and my daughter has volunteered to drive.

Wednesday I see my oncologist so I didn’t want to have to drive 2 days in a row. I’m going to go over my old lab results when my light chains were over 1,000 mg/L. I just want to hear his assessment of when to be more concerned. I’m guessing he’ll say the same thing, that when my numbers are much higher.

Then Thursday is open.

Friday is back down to the urologist for an endoscopy to see if there is any blockage or how does the prostate look? It is an office procedure so no sedation.

We also need to get the oil changed in the car and will do that Thursday. B said he’d go. So that would be his first time out driving the Santa Fe in a while. He’s definitely able to do that now and isn’t shakey. So progress!

The zone this week is the living room and I finished that yesterday. Since our front room is small and there’s not a lot of clutter I was able to finish it in about 15 minutes. I washed windows, dusted, checked my plants and washed the mirrors. That’s about it. I do look regularly what to declutter but right now I’m content with what’s in the bookcase and also the Heywood hutch. In the Heywood is my pinecone ware so that stays. I do love looking at it and using it too!

Simple Sunday

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?

Keeping on…

Things are sailing along. Almost.

B had clinic and labs and all looks good although there has been a steady decline in his numbers. But that is not unusual. He will need an infusion next week of IVIg which is to boost his immune system. That does mean another trip to Sacramento but that’s okay. It might take up to 4 hours so I’ll find something to do or bring a book.

We went to a terrific coffee shop that my son recommended called Philz. Oh my, it was delicious. Like the best coffee ever.  I guess it’s a San Francisco thing but there’s this one in Midtown.

Today is a gym day and then I need a few groceries like Almond milk and cream.

I’m new to Medicare and it’s already a PITA. I got a notice that my doctor visit was not covered, but it was.(????) I called and got 2 different stories from AARP and Medicare. Frustrating, to say the least, and I’m too irritated to do anything else today.

Tomorrow is a new day.

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Simple Sunday

Today is another trip to the hospital but before I go down I will try and do my Flylady zone.

It’s the bedroom so that is generally not too involved. I did call a house cleaning service to check on a ‘deep’ clean and I’d like an estimate. If it’s reasonable I’ll schedule that for the first week of June.  Since sometime after that we will be down there at the RV spot( I hope).

There’s been a hiccup with that as the owner has had a medical issue come up. I sure hope it can be resolved but it is what it is. And his health comes first. We still have the ACS hotel as back up. We can’t book that though till we know the exact date, so it’s also hurry up and wait.

On another note, my labs came back and I’m not going to lie. It upset me. They went up 4 points out of normal range. 18.4 to 22.4. So 19. 6 is high normal. And the ration went up to 1.69 out of normal range. (1.68 is high normal). so there it is. I’m guessing I’m coming out of remission.  I’m not going to worry too much yet as it’s still a long way to treatment.  It could be 3-4 months maybe longer but clearly, myeloma cells are activating.  It’s fine really. I knew it would happen and I’ve had 3 great years. Still, with everything going on it’ll be another trial. I actually see my oncologist this coming week( yes, I know in the middle of everything else) so I can ask him. He doesn’t get too concerned as the increases have been slow.

Anyway, life goes on, one way or another.

 

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.

 

 

 

A busy week.

Barclay finished his last chemo yesterday and had to have a blood transfusion so it was a long day for him. This was round 5.

We saw the social worker and the Nurse Practioner on Tuesday. The traffic was insane and it took us almost twice as long as it normally would since we hit the 8 am traffic. I won’t be doing that again any time soon.

So the social worker thing was just a repeat of the last one and the NP was informative. The most exciting news was his blasts have gone to 1% from 9 and that is GREAT news.

We are now in the final month before he goes in. The brother is set up with the national bone marrow registry and has the dates set for  Neupogen shots and then the harvest on the apheresis machine. So Barclay will go in 5 days before for chemo and get a Hickman catheter put in.  So we are ready to go!!!

We still are trying to figure out the details on lodging and the best so far is the Kiwanis house which is on the UCD campus. There are individual rooms and bathrooms but the kitchen is shared. Not really my style but it’s a walk away and is only $50 a night. the other option is an Extended stay but it’s about 10 miles away.  So we’ll just have to see. I’m checking Airbnb but they are more like a $100 a night or higher. So I might check out a few and message the owners about a 2-3 week stay.

My oncology appt today was canceled as the doctor was not going to be in. So that was good because I didn’t really feel like driving back down to Sacramento. So I’ll see him in May although  I left him a message that the appt maybe when B is going in so I’d just have to see.

I went to town to get my new glasses but they didn’t fit right so they need to be sent to the lab to have the bridge redone.

Oh well, the prescription is the same so my glasses are fine for now.

Dinner is something my daughter is making so I don’t have to cook!!