Looking back at 2021

For us, 2021 was a really great year in spite of Covid. For lots of people, it was horrible but we managed to accomplish some very BIG Goals. # 1 was buying Rubi( the RV), which was exactly what we wanted), then Chevy, after realizing the Santa Fe was just not going to cut it with towing, and then going on camping trips especially the new addition of Refugio State Beach.

I started chemo in January, 3 weeks on 1 week off until June. My numbers went back into the normal range almost immediately after just the first treatment but you still need to do the full course of 6 rounds. I’ve had a great 6 months but my numbers are now slightly out of high normal so it’s a matter of how quickly they will increase. I’m waiting now for this week’s labs, so we’ll see. My guess is I’ll be back on Velcade in June. Amazingly, last time ( 2016) I had 4 1/2 years of remission. Not this time and it’s questionable how long Velcade will work before it’s on to the next treatment option. Well, that’s not today so…

I m swimming in March and I continue to love it. I wish I could get more than the 2-3 times a week in but it’s just too far and too much gas to do more than that. But it is incredible.

We did quite a few projects around the house and yard including the privacy fence along the driveway. We replaced the sunroom windows that were water damaged and will do the other 2 this summer. We redid the whole laundry room. It still needs some siding up around the window and I’ll bug my son to finish that when the weather is nicer. Let’s see, what else… I painted the bathroom, and ??? I’m sure there are more things…

Today is New Year’s Eve. We’re going to have the fondue we didn’t use for Christmas and I think to watch the new Witcher series. We had a lovely walk this morning and still no dog walker. That’s very odd, so we think either he got covid or moved?? We never knew his name so can’t check it out. But really it is wonderful to not have him stomping by or trying to run us off the path. Still, he is a dark walker( early morning) so there’s that connection. Not many people do that.

I plan to go to Target tomorrow as I need my calendars for 2022. I like their very simple inexpensive ones. Not sure they’ll have any left but I’ll try there first. I do plan a no-spend January but that’s just extra stuff that I don’t need( like candles). My January budget is set including the increase of our Part D Medicare plans.

I lost count of how many books I read , maybe 75? 100? I read a lot so I don’t think it really matters how many. Sometimes I read 3 books a week. It all depends on the type of book. Maybe I’ll keep count next year except I have tried that and then give up because it starts to be too many.

Living with Multiple Myeloma

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.

The week ahead

Today will be bitter sweet as our beloved vannie is going to Cap Radio car donations. It still runs just fine and has never broken down . But, we did not want to deal with selling it even though I think it would have sold quickly. The only thing wrong is the blinkers not working right. But we must be realistic and let it go. Now that we have Chevy, that can do all the Home Depot stuff plus the dump runs etc. I’ll be sad but I think it’ll be good to not just have it parked in the yard.

We do plan a trip to costco on Wednesday so we can hit the sales before we leave next week. They have some soup on special and some other things I can’t remember now what I wanted to get. It’s best to hit the Costco sales as that is the best way to really save money.

I’m planning on swimming Tuesday and Thursday so that’ll be get up and go. I’m in the water by 7:15 am. Probably, a little crazy but that’s the way I roll. ( or swim, I guess).

Then I have my labs on Friday. I’m sure I won’t know about any results till the following week when I see my doctor. I am bracing for my kappa light chains to go over the high normal mark. My ratio had actually gone down which is good. That’s because the lambda went up too. My lambda is always and has always been in the normal range it’s the kappa that increases. So with the ratio decreasing that’s quite good even if I go out of normal range with the kappa light chains. Still it’s a waiting game. Maybe I should title this blog a lesson in Multiple Myeloma and what to expect when you have an incurable but treatable blood cancer. No, that’s too long of a story.

End of September

It’s been a good month and ending even better that we had RAIN! It was only for a few hours the other night but everything was washed off and watered. Summer has ended I think. This morning is the first woodstove fire ( we call a twinkly) because it’s just a few small logs to take that morning chill off. The kitties aren’t too sure what is going on in that”box”. I’m sure before too long they will all be underneath it to take advantage of the warmth.

I’ve had to call the bank twice about the camping refund and there is no record of it despite rec.gov saying they did the refund. So it has to be disputed. I’m not worried about it. It’ll get resolved one way or another.

I went swimming yesterday and it was still darkish when I left. Hmm… I’ll have to see if I want to still keep going that early. The pool is fine once you’re in but it definitely is cooler outside. I walked this morning and it was cool but nice.

I made black beans yesterday and have lots to freeze for soups or a black bean chili. I’m trying to build up some easy freezer meals for the next couple of months. We had one of the enchilada meals I’d froze and it was really good although most of the sauce had been absorbed so next time I’m thinking of adding more right before I cook it.

I’m waiting for my labs to come in. I’m thinking today or tomorrow. I’ll call down to Mercy tomorrow if they don’t call me. Usually my doctor is very good about getting my results to me. I am prepared that my numbers have increased but hoping it’s not anything like a big increase then I’ll freak out. ( well ,freak then accept it).

I’ve been doing a few small projects around the house. Mainly some reorganizing of pantry stuff and stuff in the closet. I did the Goodwill run the other day with the small dresser and other misc. I already have another small pile in the car but I’ll wait till there’s more to go do it.

well, that’s a wrap for me.

Friday things

There were lots of things this week.

I swam on Tuesday and it was good. Somewhat busy when I got there and then it lightened up. I’ll go again tomorrow. I haven’t been able to get the 3rd swim in yet but that’s ok. It is an effort to go twice a week as it is and it’s also gas money. I try and fill up at costco which is right on the way to the pool.

Then Tuesday Barclay had his video appt about his MRI. The PC doctor will refer him to a specialist because it is neurological. The nerve is being affected by the degeneration of the L 5 ( I think it was L5). Hopefully it won’t progress and some sort of physical therapy or cortisone shots will help. Who knows?? Surgery would be the very last option. I guess with spinal stenosis, it can progress where surgery is necessary.

Then Wednesday I saw Dr Laptalo. It was an ok visit. He was on call so he was 40 minutes late and seemed distracted. That’s okay, overall. My Kappa light chains are still in normal range and so is the ratio. So for now, all good. I do think my remission will be short lived and I’ll be back in treatment by Jan/ Feb. It really depends on how quickly they start rising. Last time it was slow to start and then was very rapid, doubling every month. Anyway, I’ll do labs in September and see him again in October.

After that I decided to go in to Trader Joes which is right off the freeway at Douglas so quite easy. I got lots of things like 3 boxes of tea, 4 different cheeses, milk, juice, some frozen stuff, wine, and chocolate. Oh and 2 little petite orchids.

Then yesterday B took the Santa Fe in to the dealer for the recall fix and had the oil changed. Poor thing had to wait over 3 hours. After that he went to Roseville Honda and looked at a truck and it seems it’s a winner.It’s a 2014 Chevy Silverado. Very clean and drove great he said. So actually today, we are both going to look at it and decide. It’s been quite a process figuring out what we need and want to do. We know for now, we want to keep the Santa Fe as our driving vehicle. The truck is really for towing and Home Depot/ Lowes kinds of things. Anyway, if we are committed to travel in the Rubi then this what we need to do. We also decided to donate the van to the public radio station here( well Sacramento). We all agree trying to sell for $1000 bucks isn’t worth it especially since the windows don’t go down except the drivers side and the blinkers only work sometimes. The engine is still quite powerful but overall, we’ll just see if we can donate it. Maybe they don’t even want it???

Yesterday while he did that I made jalapeno pepper jelly. It looks really good so I may open one later and try with a dab of cream cheese.

This was the last jar and it didn’t quite fill up so we’ll start with this. You can’t see the green too well but it’s a nice color of green.

Happy Summer Solstice and Simple Sunday

The heat has been brutal. Today we’re still topping out over 100 degrees. By tomorrow it should at back to the 90’s. The garden is suffering and most of our veggies are not too happy. I’m not sure what we’ll even get. The tomatoes are sad looking. The gopher has gotten most of the pepper plants and I don’t even see a zucchini plant out there. I’m not sure how to plan the garden if we’re going to have such heat, water shortages, and gophers. 😦

Happy Father’s day to Barclay!! The best Dad ever!! So much fun over the years!

Today I will continue with looking at cookbooks. I already have another 4 ready to go. Then the Flylady zone is the bedroom. I’ve moved a few things out of the closet and there is more shelf space in there now.

I still want to rearrange where I put the red Fiestaware. Right now it’s in the teak bookcase on a shelf. I’d like to get it underneath in the cabinet. One empty shelf idea or at least some white space on a shelf.

The kitties are getting bigger and more rambunctious. We have another appt for mamakat but last time she ran out of the cage so I’m not sure what we going to do.

I have my doctor’s appt Wednesday and my labs should be there. I do want to talk to him about a few things like would it be worth getting a Velcade shot once a month? and my sleep pattern is terrible. I have interrupted sleep every night. If I take Ativan then I can get about 4 1/2 hours straight. Then what about my watering eyes? I’m assuming that it will get better. And of course, the neuropathy. It never gets so bad but it still does get worse as the weeks go on. And lastly, what about my IBS and having a rough day usually the day after Velcade on the last round of the month. Oh well, he’ll probably just say that’s chemo. 😦

I’ve ordered the brackets for the kitchen shelving and then we are planning to put up 2×10 shelves. These bracketts are the same I’ve used on the other wall and are quite nice, hand forged and all. I’d still like the ikea pantry but since it’s been a year and a half since they were available ,I’ll just move forward.

Velcade, Round 6, shot #3.

Done!! 6 months of Velcade. 3 weeks on one week off.

I get labs Friday and then see Dr. L next week. Where it goes, who knows.

Tonight I have leftover vegetarian chili and IP polenta.

Tomorrow is Dex Thursday and I don’t walk. I’ll tidy the house and continue to do this next layer of decluttering. This round is sponsored by Ann Patchett whose New Yorker article really hit home. I’m getting rid of all my Fiesta Ware except the red. I like the red and we use it at Christmas and Valentines day. I plan on giving it all to Cancer Thrift Store not Goodwill. I just feel better giving it to them as the money stays local. Anyway, it’s a lot. The other thing is all my kids Waldorf toys( ok, not all of them:), but quite a bit. If they don’t sell on our local facebook they will go too. We have the Live oak Waldorf school here in Applegate( about 3 miles away). So far no one is interested. It’s interesting to go to another level when I’ve decluttered so much and so much was valuable. navajo rugs, vintage fans, dishes, books etc, antique silver( yes, silver).

But this is what I want:

I want our small home to be a true reflection of minimalism and where we are at this point in our life. Even though what I’m getting rid of was only on 3 different shelves,that’s 3 too many. I’m not interested in making a buck off Fiesta Ware. So what?? It’s nice but that’s it.

What about you??? Are you deciding who you are in your life right now?? And what you have reflects that.!!!

June 15th, 2005.

Possibly the worst day of my life. Standing in the driveway @ 2pm and the awful doctor called that the biopsy showed multiple myeloma and he’d refer me to an oncologist.

I was referred quickly and by 4th of July week I was slated for radiation. 17 rounds of radiation. You went 5 days a week, so it was a little over 3 weeks.

What can I say except, it was what it was and it is what it is.

So 16 years later, I’m finishing up 6 months of Velcade tomorrow.

It is what it is.

Velcade, Round 6, shot #2.

Today I drive to Rocklin to get my shot. Then straight home to do some chores, dinner prep, and then take Dex after lunch. Last week the 16mg Dex wasn’t too awful. Still I do need to modify what I do since DEx is sneaky and I certainly wouldn’t drive.

Yesterday Costco was great. It was straight in and we were done in 30 minutes. It wasn’t busy at all. Not sure if that’s because everyone had shopped on Sunday or it’s close to the middle of the month. Anyway, it was great for us. We got some great looking fruit and most of the basics we needed. They didn’t have the organic Lundberg brown rice so maybe they’re not carrying that anymore. I don’t think we’ll need to go back till the end of July. We did buy 2 bags of coffee so that should get us thru till then.

Budget wise, the 3 annual bills are paid, AAA membership, Costco membership and propane tank rental. All are once a year bills. Our next set of annual bills will be fall and that’s expensive as it’s the house insurance( which is going up every year due to fire concerns, car insurance( bi annual) and property taxes(bi annual). I’m moving a small amount of money over to a savings when I can to put toward these. I doubt I can get to the final amount but something will help. Right now with having put lots of RV misc on the credit card, that’s number one priority. I should be able to finish that next week.

Our weather is lovely and very cool. Next week looks like we’re back in 100 degree weather so not fun. It’s nice not to use the coolers all the time and we’re not having to water so much.

Update on the kitties:

My daughter was able to get the last one from the barn. Mama kat was not happy and has been up here at the house trying to ‘call’ her out. She’ll get over it. My son was able to get a voucher from the ASPCA to spay mama but we have to wait to get it. She may get pregnant in the meanwhile but I guess that’s the chance we’re taking. I’m hoping we get it done in time or? or, those kitties would just go straight to the shelter. ( no – kill one).

Friday things…

We are back home from our ‘maiden voyage’ and it did have some snafus.

So here we are leaving the driveway. Up ahead on the left is one of our big ponderosas and B didn’t take the turn wide enough so he hit the corner of the awning and snapped off the cover. Fortunately, it didn’t damage anything except the plastic cover which can be taped or replace. The awning worked fine in camp. The drive up to Tahoe was perfect. Not a lot of traffic and we went 55-60 most of the time and the Santa Fe did great. Controlling the steering is something to pay attention to probably because of the weight on the hitch. I don’t know if having a truck resolves that or what but we can’t really entertain the idea of a truck at this point. We have anti sway bars but it’s still something to pay attention to. B did a great job driving though.

So we got up there early and asked if we could check in and Yes, we could. So, here is our spot.

We’ve stayed in this spot before and like it as it is across from the bathrooms.

The campground had way more people than when we were there 2 years ago. I’m guessing pandemic fatigue and everyone wants to be out doing something. Of course, there has to be the one group of campers that are noisy, loud, obnoxious with too many kids running around. Sorry, but I do think one needs to be respectful of Other campers!!! They were certainly not and they moved picnic tables that are NOT meant to be moved together, and were hacking at tree stumps for firewood. Geez, I’m glad they were far enough away that I couldn’t see all there crap. I would not want to be there this weekend with them blaring music.:(

The first night we did a Lodge dinner of stuffed peppers.

I love Lodge cooking and forgot how fun it is to just put the food in and sit back and relax.

The second night we used the Hibachi and I cooked some chicken for me and a Dr. Praeger burger for B. We had potato salad as our side. Quite yummy.

So the second snafu was concerning the battery charge. We were under the impression that the battery and the solar charging would last easily 2-5 days. Well, we were running the frridge all day and by 7pm the battery charge was low and we turned off the fridge. No lights or water pump either. So the next morning we hooked the Santa Fe back up and charged the battery. Then we ran the fridge 2 hours in the morning and 2 in the afternoon. Then we used the water pump as necessary. That seemed to do the trick and the battery held the charge overnight. It was frustrating to have it happen and like I said, we were told the battery was fine for days. Nope. So we are going to have to buy a second battery and they are not cheap. But it should make a difference.

We hooked up Thursday and left by mid morning and had a lovely ride home. I 80 was not too busy so we did fine. Trailering is quite different with this as opposed to the tent trailer and I’m leaving it open till next year whether it is for us at all. I think the difference would be getting a used truck early next year and then seeing how the trailering feels. The SF can do it and it was fine but I think the uptake is a bigger vehicle with a V-8 will make the difference.

Here’s the bed. Comfy and great windows to look out of. That front window is tinted and you can’t see in at all.

Here’s the totally cool kitchen. We can’t use the microwave unless we’re hooked up to a 30 amp( I guess, not too sure of that).

On our way out we stopped at the Donner Party Memorial.

She was a survivor, I think.

So, today(Friday) I went for my first shot of Velcade in this final round. How long it will keep in remission is anyone’s guess but I hope for a while at least.

WEll, I’m off to take DEX and probably rest.