Simple Sunday

Well, it’s a new week starting and I’m glad. Last week really was never-ending with stuff to do and I felt stressed all week.

We did get B signed up for Medicare Part D. We actually won’t use it for his Noxafil( Tier 5 drug) because it will be $4900. So we will keep the Cobra for now so that his prescriptions are covered that way. Hopefully, that will work. He won’t be on Noxafil forever, just maybe 3-4 more months.  So he is on Medicare and all signed up for Plan F and Part D.

This week I see my eye doctor for my quarterly check on my macular pucker. I’ll need my eye dilated which I hate. But it has to be done. I can’t see a lot out of my right eye but my left eye makes up for it.  Although when I went to renew my license and get the Real ID, I had to take the eye test and didn’t realize they test your eyes individually.  I panicked a little as I know that eye is around 20/60. but I squeaked by. Next time I’m not so sure. I could have surgery but it’s not guaranteed. But I still may go that route yet.

Other than that it will be a slow week and I need it.

I plan on going to the gym 3 times and keep walking in the mornings.

The fall chores are getting done and B has been busy doing stuff that needs attention. Painting, fixing some concrete steps, tidying the yard, putting away BBQs and all the fall things that need doing.

This week I plan on doing some painting outside on the window trim. That was the 2 windows he put in last month.

In not so good news, my Kappa light chains jumped 13points up. And my kappa/ lambda ratio really jumped to 3.68 mg/L. That’s because when my Kappa goes up my Lambda stays low so the ratio goes up.  Well, Fuck it, not much I can do and I do feel ok. I see Dr. L  at the very end of the month so once again, I’ll bring up when to start. I hope it can wait till 2020. I figure 2 more months and if it goes up 2 more times and hasn’t , hit 100 I can hold off on treatment. I don’t mind going back into treatment when necessary, it’s the dexamethasone that is so difficult. I pretty much lose 2 days a week. Oh well, F#*k it all. I’ve been doing this since 2005 so I guess I should be used to it. Although you kinda know you’ve been a cancer patient for so long, your family members forget to ask how your labs are.

This week is the kitchen zone so I will start that today.

Our fall weather is really spectacular. Leaves are turning and the mornings are chilly but by afternoon it’s just perfect. We had a fire outside last night because I wanted to.

Birthday trip

We did it!!

This is our birthdays’ gift… B’s is September 22( the same as Bilbo’s and Frodo’s, ( so lucky) and mine is next week on the 30th…..  we are getting ‘older” ( ha, ha, no really we are now old!!

I had reserved 2 nights at Tahoe at Nevada Beach( our favorite). I wasn’t 100% sure that this was a good idea with Barclay just 4 months post-transplant but it turned out brilliant.

The weather was cool at night but the days were picture perfect fall in Tahoe. Plus the campground was almost all ‘old’er people and not a ton of kids running around or riding bikes. The beach was almost empty as was the beach parking lot.

In a word, it was my idea of perfect.

This was also a big deal as B hasn’t really driven any length since really his diagnosis so also a big accomplishment. Next week we see the transplant doctor and he should be able to tell us more about the BMB results which looked great. No MDS, no leukemia, the part we didn’t get yet was the donor cells amount. So hopefully that’s all good too. UNADJUSTEDNONRAW_thumb_398.jpg

We certainly hope it’s all good.

Today, Barclay has his labs in Auburn instead of UCD med center Sacramento. Then we plan to do a call to AARP to sign him up for supplemental plan F. I’m hoping to get Part D signed up at the same time.  So we may be on the phone for a while.  There is still some billing issues we’re dealing with when the Cobra wasn’t activated. I’ve called twice but it still seems to show we owe that money. I’ll wait to deal with that as I can really only handle one thing at a time.

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This is our sweet tent trailer that we really love and our anniversary present you can see there is the Honda generator. Wow, so quiet and definitely worth it.

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The handsome transplant patient 4 months post-transplant and almost a year since the horrible diagnosis. A new life.  A huge shout out of a” thank you” to his brother, Rodman, for the gift of life. A true gift.

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Here’s the happy camper with morning coffee!!

 

 

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.