Monthly Archives: November 2021

Living with Multiple Myeloma

Posted in Blood test, cancer, Multiple myeloma, Myeloma, Uncategorized by

It was right around Thanksgiving in 2003 when I hurt my back(so I thought). I’d been lifting many (40) boxes of Life magazines from an estate sale. A few days later I was doing some exercises and felt a weird pop in my back. The next day when I got out of bed I just collapsed. Extremely painful. I managed for a week and then went to see my PCP, but he was out for Christmas so I saw the NP. She basically misdiagnosed me with a strained back. Never ordered x-rays which would have told the story. So I presevered and lived with the pain for a year. Ultimately it did improve but since cancer was the culprit( not that I knew though), a plasmacytoma tumor was developing where the fracture had been( not that I knew it was even a fracture at this point). Eventually, I asked for a referral to a sports doctor to see if a Kyphoplasty surgery would help. This was now 18 months from the original fracture. He ordered the MRI and the rest is history so to speak.

I’m almost 17 years out from that March of 2005. I feel enormously grateful to have lived with this so long and managed. Lots of people don’t get that chance.

My labs are back and show a 1 point increase putting me out of normal range but by very little. 19.7 mg/l , high normal is 19.4 mg/l kappa light chains. So hopefully my increases stay small and we can be ready with a plan once they start jumping exponentially. I get my next labs at the end of December so, we’ll see. i had an increase in the Alpha Globulin as well. Not much but that might mean there is more protein entering the blood stream.

Cancer has taught me to take things in stride and never for granted. Also, each day has its own rhythm and to go with that flow. When you’re getting treatments, there’s no trying to make it go faster or slower, it is what it is and treatments will go according to the schedule. I’m certainly a more patient person because of my cancer treatments. Life is full of uncertainties and all we can do is do the best we can with the time that is given to us.

There’s always some anxiety with labs etc when dealing with cancer but I think knowledge is powerful and helps keep most anxiety at bay. Since I know what’s out there, I handle it better. At some point Velcade will stop working and I’ll be on to the next treatment which would be Darzalex. It is an IV to start and is given over 8 hours to start so that if you’re going to have heart issues they know. I believe after that initial one, it’s a shot like Velcade but I may be wrong. I think most people tolerate Daralex well. Well, that’s all speculation at this point.

Simple Sunday

Posted in books, cooking, home stuff, reading, seasonal things, Walking by

HAPPY HANUKKAH!!

Tonight is the first night of Hanukkah. I plan on making some latkes and a piece of salmon and salad. Nothing too fancy.

We are not Jewish but atheists, but I do love traditions and lighting the candles to me represents bringing some light into the world. I didn’t do presents as such, just a few chocolate things from Trader Joe’s and I’ll give the kids some money one night. Not much as they both work good jobs.

We are having lovely November weather. We had a fire outside yesterday afternoon and it was perfect for sitting outside. Our walks have been nice too. We still see AH but I think the train has left on that and we just don’t care anymore. Once in a while he’ll be a little passive-aggressive and walk straight at me with his dog but then he moves over at the last minute. And if he sees us coming with our flashlights he’ll turn his off. Weird but ?? Oh well, we’re just doing what we’ve done for the last 10 years. When I started walking daily part of the path was still dirt and there were very few people who walked. Now it can be very busy especially by 10 am.

Today is a nice pottering day. I’ve made some pumpkin spice scones. Swish and swiped the bathroom, scrubbed a cast iron, and got out some more Christmas things. I put the lights on the Ikea tree and that’s all I plan on doing. We were lucky to get a Christmas tree permit so we’ll go get a live tree for the sunroom next week. We certainly don’t need it but for $10. it’s a cheap date for B and me.

I’ve been working my way thru PD Jame’s books and she is such a good writer. I am enjoying them.

Well, back to pottering around. I’d like to finish embroidering one napkin too.

Some photos from the trip and other misc stuff.

Posted in Blood test, California, camping, Myeloma, travel, Walking by

I got my P23 booster yesterday( pneumonia) and it was all good. No reaction, but I didn’t expect one as I’ve had the P13 before. So another medical thing ticked off. I still need to get a dtap but will do that soon. Always stuff. I also had my labs done by the phlebotomist from hell. Well, she was new and didn’t get the vein right. I’ve had thousands of draws at this point in my life and I know when they get and when they don’t. Anyway, I should know if I’m moving out of range on my Kappa Light chains by next Friday.

Here’s our Thanksgiving table using the dishes my dear friend Sara gave me years ago. The wine is from Monterrey County. It was quite delicious.

Here’s the husband looking happy with his nut loaf!!

My super handsome son!!!

This is the Diestel turkey he brined and cooked!!!

This is the Paso Robles RV place.

My beautiful daughter ,Sachi.

Backing in to the spot. But he redid it so it was straight in.

All cozy inside. Having full hook ups does make a huge difference.

This is on the trail at Refugio. We walked this everyday about 2miles.It’d probably help if I combed my hair:)

Frugal Friday, I suppose.

Posted in budgets, California, camping, swimming, travel by

We are back from our Rv adventures. Paso Robles turned out great. At first, I thought, well, it’s all big Rv’s and maybe we won’t stay the second day, but we really needed the day to just decompress. We had a great spot on the end with only an RV on our left. So that was a big factor. We really like space around us so that spot made a big difference. We will go back next year if everything works out. Refugio SB was only a 2-hour drive. So that was good. The only crazy thing was going into the grocery store( Albertson’s). It was a madhouse and really stressed us out. But we got what we needed. I especially wanted some local wine from Paso Robles and they did have a whole aisle of just Paso Robles wine so that was cool.

The next day we hooked up and left for the drive home. We were concerned that it would be too long but we came under 5 hours. Without trailering it probably would have been just under 4. We stopped 3 times to stretch. I-5 is great for rest stops. All major interstates should have them. We had snacks and peanut butter sandwiches. Well, I sat on mine so I just nibbled at it.

Getting home was fine and we navigated past the tree that needs to be taken down for us to have easier access in and out. Going in is much easier than going out. Next year we’ll figure that out.

Budget-wise, traveling is expensive. Not the SB or even the RV resort, but GAS was pretty outrageous. We never eat out so that saves money. But for next year I will add to my extra savings for gas.

All I have left of with annual bills is our property tax and I’ll pay that next week. Then we get a good size break from annual bills till March/April.

Thanksgiving was low-key. I actually used the Diestal Turkey I bought last year on sale. My son brined it and cooked it. I did the sides.

No Black Friday sales for us. Tomorrow I plan on swimming and maybe putting up the small Ikea tree I bought. We’re not doing any ornaments, just some small lights. Hanukkah is Sunday evening so I plan to put out a few little decorations. One is a blue glass ornament my son actually did in, I think, 6th grade at a local glass blowers studio.

Hello from beautiful Refugio State Beach in Santa Barbara county.

Posted in Blood test, California, camping, swimming, travel, Walking by

This is the view from the best camp spot ever. Boy, did we ever luck out with this spot. It is amazing. Right on the beach edge with only those views in front of us. I kind of wished we booked for as long as it allows but 6 nights will be fine.

We had a good drive down and Chevy and the Rubi did great. We stayed in Salinas KOA and it was fine for one night. We didn’t even unhook. The spots were awfully close but we managed. From there the ride was also great and we landed here @ 1:15 and were able to get our spot. Everyone walking by says” Best place in the campground ” and boy are they right. When I made the reservation I had no idea that this spot was so great. So we’re hoping to make this an annual trip in November. The weather has been great too.

We went into Santa Barbara and the first stop was Renaud’s for their famous almond croissants. Truly amazing. We love their breakfasts but we had already had our breakfast in camp so we had the croissants and then bought some for the next day. State Street is now a promenade and no cars so we walked as far as we wanted and it was beautiful. Almost NO tourists at all. Santa Barbara really is so beautiful. Next, we went to Stearn’s wharf and Moby Dicks which was our go to place for happy hour. I had a bowl of clam chowder and B had fries. It was only fair and I think we both realized that being in the camp spot and having a glass of wine was better. But it’s only fair to say when we used to do Moby’s, we were in the Holiday Inn right off State Street , so different circumstances. –

We’ve walked the beach every day and it’s lovely. Today is a stay-in camp day and tomorrow we leave for Paso Robles. It’s more of an RV resort so we’re not sure how we will like it but it’s there for now. From there we were going to go to New Brighton and had reservations but it’s a bit of a detour( about 2 hours) and then we realized we’d be driving the day before Thanksgiving, so we cancelled that and will drive home on Monday. I suspect it will be busier than when we drove down but that’s the way it is.

We’re learning quite a bit more having stayed in this spot for 6 days. The solar panel is working great and the battery has stayed charged. We’re running the Honda generator about 2 hours in the afternoon to charge my mac and our phones. Overall, it is perfect for us and we really feel grateful for this chance in our lives.

Back to reality next week, I have my labs so that’ll be interesting to see if I go out of normal range. Plus, apparently CVS 2 years ago gave me the wrong pneumonia shot. I had had the 13 and was supposed to get the 23 but they gave me the 13 again, so now I need to go get the 23. What a PITA. And I’ve been having some hearing issues with my left ear that started about a month ago after swimming. The doctor checked and said there was any inflammation or water but behind the eardrum was some fluid so he recommended Flonaise. It hasn’t done much but I’ll let him know and he was going to send a referral to an audiologist. Ahhh, the joys of getting older. I am excited about getting back to swimming though. I miss the water.

Friday things…

Posted in books, California, camping, Uncategorized by

We’re getting ready to leave tomorrow. The first stop will be in Salinas/Monterey KOA since that’s the halfway point. I think that site will have hookups so we will try and figure that out since we haven’t had that yet. Then the next day down to Refugio State Beach. Refugio does not have hookups as far as I can tell. We’re planning to go into Santa Barbara Tuesday as that’s the farmers market.

Today I packing up the dry food and tomorrow will do the refrigerator stuff. Barclay had the oil changed in Chevy and so we’re good to go there. He’s going to pull the RV out this afternoon and then just back slightly into the other driveway( our driveway splits) so we can pull straight out tomorrow. Part of the reason is our newish neighbor’s daughter’s boyfriend parks in the road( usually on Friday night) and that would block us from being able to do a wide turn so this way it’ll be done.

I had a good swim this week and will miss the pool while we’re gone. Hopefully, it won’t feel like I’m starting over after 10 days. Well, it is what it is.

I’ve finished up my house chores except for vacuuming and this morning PGE is coming out to check on the tree by the barn that is a leaner. It’s a huge Ponderosa so maybe they’ll take it. Then right after that, I’m going to the pet bookstore to load up on some books to bring with me.

I’ll post some pictures when we’re there if I can get some Wifi service.

Simple Sunday

Posted in decluttering, Flylady, minimalism, simplicity, Uncategorized by

Well, the clocks went back an hour so it’s now only 7am and we’ve walked and I’ve done some banking and now I’m eating a bagel.

I’m planning on starting the kitchen zone in a few minutes and getting that done. Then I plan to get a bag ready for the food bank and drop it off in one of the Food for Families bins.

Yesterday, I shopped at the new Trader Joe’s and it’s a lovely store. The layout is different so I had to kind of zig-zag to get stuff but it was fine. I picked up some Thanksgiving things like cornbread stuffing and some premade turkey gravy. Since we will be arriving home the day before Thanksgiving I need things to be as easy as possible. Of course, my son and daughter will be here to keep things running smoothly like letting the chickens out in the morning and in in the evening. They’re both working all the time we’re gone so they can keep up on the chores. It’s a big help really.

I’ve been reorganizing a few drawers of things like tools and will finish that up today too. B is taking a load to Goodwill so a few more misc things out the door.

The week ahead isn’t too busy. I have an annual visit with my PCP which is annoying to me since I see Dr. L every 8 weeks but I guess it’s their policy. Still a PITA. One is Sutter and my oncology is Dignity so I guess they don’t really communicate.

Since we’re having a no-gift/minimalist Christmas it has been very interesting to go into Target and look at all the stuff and realize, I don’t need to buy anything!!! ( well, a candle but that’s all the time). I’m determined to see how this plays out and if I like it or not. We have never had a Christmas with no gifts so this will be a new experience. Besides, we all get what we need/want anyway all year long. I will send my sister something( usually Harry and David’s pears) and my brother I just give cash to. Since we have no other relatives to exchange with I guess it does make it easy.

Planning our RV trip to Refugio state beach

Posted in California, camping, travel, Uncategorized by

We are still planning to go on our trip to Refugio in 2 weeks. We have it planned where we will drive to Salinas/Monterey KOA the first night and that’s about 4 hours. I absolutely do not want to drive more than 4 hours while trailering the RV. I know it may happen once in a while but we are definitely trying to keep it within that time frame.

Refugio State Beach is just about the only campground near Santa Barbara. At least above SB. I’m not sure what I below it going south. It’s about 30 minutes from SB so not just a few minutes down the road. It’s a small campground that is as all the campgrounds are these days booked way in advance. I hope we like it.

Then from there we will leave and come back up to Paso Robles area and spend a night and then go over to New Brighton for 2 nights and then home. New Brighton is about 4 hours trailering.( going 55-60mph)… All this is contingent on the weather as California state beaches closed New Brighton when the big atmospheric storm came in. We still haven’t got our refund and I’m going to have to do the same thing that I did in September with Nevada Beach when that got cancelled and the refund was sent but not received by my bank. Pain in the Ass.

I’ve started to line up next year and hope we can get some reservations.

Here’s what I have so far listed not reservedyet:

Wright’s Beach

New Brighton

Nevada Beach

up the Oregon coast then over to Portland and then down I -5 to get home.

?? something new maybe down by San Diego ??