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.

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.

 

Simple Sunday

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.

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

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.

 

Friday Stuff

Our air quality is much better today. But Sacramento and even San Francisco are in hazardous air quality. Also, so many people still missing and I’m afraid they probably lost their lives in the fire. Very Sad. We are updating our emergency plans and have a bin with instructions ready to go. Honestly, you just don’t know if it could happen to you so better to be prepared.

My labs came back an myKappa light chains did go up 2 points 😦 to 16.1 and my Lambda down to 12.0 and the ratio went up to 1.34. All still in the normal range so I’m not going to sweat it but still there’s a tiny part of me that wants it stay lower.  But it’s ok. It’s still well below normal (kappa is 19.1 and Lambda is 26.1) so it’s all good.

Today was a gym day so I can get back to my regular schedule after being sick those 4 days. I like to go Sunday,Tuesday, Thursday.  So I will go Sunday and that puts me back on track.

I went to Safeway and got most of the rest of Thanksgiving stuff. I just need cottage cheese for the nut loaf and sour cream and probably some salad stuff next week.

Monday is my big day in court for my name change. I’m not worried about it. It’s only step one of the process to get the certified birth certificate from NY. I’ll start that paper work Thanksgiving weekend.

Tonight is a homemade pizza. I’m doing one with sausage and peppers and one with mushrooms and olives.

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I just love this pinecone image.

OMG….

Such good news!!!!

My kappa light chains went down almost 2 points.

Lambda light chains stayed just about the same.

The ratio went down to 1.18.  The ratio is a very important piece of the whole equation.

So all in all, I am beyond thrilled. This is now month 25 after stopping Velcade.

It is so amazing and I am so grateful and happy.

Time to celebrate!!!