Frugal Friday

I was going to go down to the Rec center( aka as the gym) today but decided not to being it is Black Friday and HWY65 where I turn on to is right on the way to The Galleria shopping mall and big stores like Walmart. I will go swimming tomorrow. It’ll be early enough that I should miss the shoppers although I might get some traffic heading up to the Sierras on the way home.

We don’t go out to shop on Black Friday but I did find a 25% off deal on Bombas and bought a couple of T-shirts for B and a pair of socks for me. Then Amazon had a good B F deal on a comforter and we need a new one so I got that. It was $20. I think that was 50% off.

I put away the pumpkin and fall things from the table and will decorate with a few Christmas-themed things later. I have some red candles and a few other things to put out. I won’t do a lot yet as it’s a bit early for me.

We all had a good Thanksgiving with lots of good food. I don’t know why eating dinner at 2 pm sets me off but it does and then I don’t feel like eating at all later. I did have some homemade pumpkin pie around 7:30 though.

I’ve been somewhat depressed at my kappa light chains going up 4 points. Even though Dr. Laptalo said, it’s just a small increase, don’t worry, I do worry that now things will start doubling. I mean I know intellectually that my cancer will come back and I’ll need treatment again but maybe it’s just so tiring to think about it all. Anyway, in a few days, I’ll feel better once I process it. There’s nothing I can do about it so…

I’m going to look up a pressure canning recipe for turkey broth or soup and see what it looks like. I may do that tomorrow. I think I’ll make the broth today. and then if I want to do some pressure canning it’ll be ready to do. I might put up our small Ikea Christmas tree this weekend too.

Getting ready for camping 2023

This would have been the week we were in Refugio. We canceled due to the cost of gas. ( gas is around $6.00 a gallon here but in the Santa Barbara area it’s probably higher. We both agreed that we didn’t want to add to the cc right now with the other things that are still on there. Plus, we felt we had done it last year and it was great but we didn’t really feel like we needed to go back there. Santa Barbara is always a draw for us but that’s still 30+ minutes away from Refugio so it’s not like we could just pop in. Anyway, we’re both ok with the decision.

My goal for 2023 is to go to one new place to camp and explore that area. I’d like it to be within 4-5 hours of driving.

So far for 2023, we have New Brighton booked in March and Wrights Beach in April. Both are 5 nights and that’s a nice amount of time. I think we’re going to book Napa at the end of each of these if we can get in. I’ll check that soon. My goal is to not drive more than 2-3 hours a day unless we are on an extended trip. I still have hopes that we can get to the Southwest, and then Pacific North West but with gas prices, we need to be budget-minded. I think I want to have a dedicated savings for travel and then that money will be in there for gas etc. We don’t spend a great deal generally once we’re in a location. So it’s really gas and the campground fees. We love the places we go to regularly so that’s all good. I mean Tahoe is my favorite place and where I want my ashes spread after I leave this earth.

Barclay is off to buy the concrete paint in a different color this morning down at Lowes. We decided to go with an earth tone in darker brown. Let’s hope we like it. Sort of an expensive mistake with the gallon being $50. Oh well… Then he’s going to pop into Winco for a few things. I think shopping at Winco has really helped my grocery budget. I can’t remember the last time I went into Safeway. Also, not running down to the Holiday Market for bits and bobs also is a money saver as it is definitely more expensive. I’m probably spending more at the farm but since it is produce just picked I’m ok with that. Last week I got potatoes, 2 cabbages, lettuce, spring mix, a leek and ?( I think it was some broccoli) it was $20. So pricey but ok.

I’m going to prep more apples this morning and get them ready for applesauce. I’m not sure I’ll cook them today but I’ll see how I feel when I’m done.

This time of year always is difficult for me remembering when I had the compression fracture in T 10 and didn’t know what it was or why. It was November 2003. Then later, in the fall of 2005, I was getting ready to do the SCT in February but was getting heavy duty chemo during this time. So difficult memories for me. Then Barclay’s MDS happened right about now too( early November). It’s an emotional time remembering these periods. Even when my last relapse was hitting numbers way too high, that was November of 2020 and I started chemo in January 2021. So lots of sad and difficult memories. Of course, I’m an optimist so right now things are stable. I’m doing well, Barclay is well and our kids are healthy and happy. So that’s all positive.

How I learned to live with an incurable cancer.

This past week marked my 17th year of living with Multiple Myeloma. I was diagnosed on June 15, 2005. But it’s clear that when I initially had the compression fracture of T 10 in November of 2003, Myeloma probably had been roaming around my body for a couple of years. But by the time of diagnosis, it was now a plasmacytoma on T 10. So that’s almost a year and a half from when I had the fracture. The course of treatment was 17 rounds of radiation, followed by 6 months of chemo every 3 weeks. Induction treatments now include Revlimid and Velcade which wasn’t available at my time of diagnosis. I had Doxil, Vincristine, Cytoxan, and dexamethasone. After that, it was preparation for the STC. I had the SCT in March of 2006.

I think part of the shock for me was, that I’d never really ever been sick, nor did I hardly ever use traditional medicine( since I was never really ill). Even at the time of diagnosis, my compression fracture was healing to some degree and I was not anemic, a common symptom of myeloma. In fact then and even now my CBC panel and CMP panel are all normal. But add in a light chain test and Spep test and there you go. At diagnosis, my SPEP was at 3.9. Not terribly high but high enough.

All of this was certainly foreign to me and I felt like a ‘stranger on a strange planet’. The first time I entered the chemo room, I cried. It truly was bizarre to see so many chemo Iv’s and patients ‘hooked’ up. After a time I did better and came to appreciate the hard work of the chemo nurses. Even now, last year going down to Rocklin Infusion, the nurses are just the best and it takes a special person to be a chemo nurse.

The first year was the hardest. The Stem Cell Transplant was one of the hardest things I’ve ever gone thru. Some people sail the SCT, but I was pretty miserable. I couldn’t eat( I had to get 1 insure down a day), I had constant diarrhea, and just was barely conscious. But I did get thru it and it took almost a year to recover. But I did. I was stronger and wiser.

So what have I learned?

First, take each day as it comes. We really only have this moment and how we live in that moment takes us to the next moment. I still try to gauge how I feel each day and what I need to do that day or not.

Second, I learned to be more patient. There’s a time for all things and you can’t push time. So when I was in the midst of appts, treatments, etc, there was no rushing or trying to do something before it was time to do it( if that makes sense).

Thirdly, your blood is your blood, and the same with facts. The numbers are the numbers and you can wish, scream, pray, jump up and down but it won’t change a thing. Your blood is your blood. So, of course, be positive but no imaginary person in the sky is going to help you. It might make you feel better for doing it (the praying part) but it’s not going to change your blood or take away the tumors or whatever. This is not to say be reckless, or eat junk food( only occasionally:) ) or whatever but be sensible, eat healthy things and try and do some exercise even if it’s just walking.

Four, around five years into my journey, I started becoming more minimalist. As I’ve mentioned before, I had 4 great years with no treatment and my cancer was in remission. But myeloma just doesn’t go ‘away’. There are always some rogue cells and then you relapse. Flylady jump-started my decluttering and doing a daily ‘tidy up’. I started always having a clean counter and sink. And it really does work.

Fith, it is what it is. Always.

Becoming minimal really changed, although slowly, how I felt about everything. Money, bills, life, buying things, not buying things. and so much more.

When there’s always the “what if, when??”, it’s very hard not to obsess. Early on in this journey, I got a prescription for anti-anxiety medicine. It was a life saver. I stopped obsessing over everything. So, I suppose that obsessing taught me to not worry about what was going to happen but just BE with it. Although in truth, I needed the anti-anxiety medicine just to cope. Now, I don’t and figure, it is what it is.

In some ways, living with incurable cancer, it’s always there somewhere lurking in your mind. ( and unfortunately)in your body. You just have to acknowledge it and get on with living.

Since 2005, I relapsed in 2010, 2015, and 2019. Each time I’ve been lucky the treatments have worked although I suspect each time between relapses will lessen. That’s ok. It’s not my first rodeo.

To quote Mary Oliver:

“Tell me, what is it you plan to do with your one wild and precious life?” — Mary Oliver, The Summer Day

and this one…

“Instructions for living a life.

Pay attention.

Be astonished.

Tell about it.”

― Mary Oliver, Sometimes

Simple Sunday

What a difference a day makes. Yesterday it was 93 and hot. Today it is overcast and 70. We even had a sprinkling of rain. How cool is that and we really need it.

I had a good walk this morning and almost no one was there except the one runner who happened to be walking. At first, I didn’t recognize her not running, and then on my second round I said” oh you’re not running, I didn’t recognize you”. She laughed. So all in all a nice walk.

I had a bit of a setback yesterday from doing the weights on Thursday. I guess the lactic acid build-up or exercise flu hit me pretty hard. I felt pretty lousy all day and figured out it must have been the weights even though I hardly did more than 20 minutes. So when I go next, I’ll need to hydrate and do less. I’m very careful with anything I do physically but I guess it was more than my body could handle. The last time I did weights at the gym was February of 2020 right at the beginning of all the lockdowns. So perhaps even the small reps were too much. I guess there will be an adjustment period.

Today I’ll do the bathroom zone and quick house tidy. Mostly just putting things back where they belong. Since I didn’t feel like eating much yesterday my daughter put together some ravioli and salad. I’m not sure what I’ll do tonight as I still don’t feel like food much. Maybe breakfast for dinner.

I started reading ‘Maus’ by Art Spiegelman and geez, wow, If you haven’t read go buy it, get it from the library. It is brilliant. Tragic, but brilliant. I’m not sure what the ‘banned book’ thing is about as the story is about his father in Nazi Germany and how he survived in Poland and then eventually was betrayed and was sent to Auschwitz. Maybe the White Supremacists don’t want the truth out there. ( I just looked up the banned book deal. Apparently, it Tennessee that banned because of language(damn) and nudity( I guess the naked men when they were stripped in the concentration camps). WTF, those horrors and so much more beyond our comprehension happened. The world CANNOT forget what Hitler did and was doing to eradicate and entire race of people.

I went to the farm stand Friday and picked up some early zucchini, radishes, lettuce, spinach, and some delicious peaches.

All good news with my labs. No increase and staying almost where they were right above high normal. So I made it to my goal which was to stay out of treatment for a year. Everything else will be icing on the cake. BTW, June 15 is my anniversary of my diagnosis of Multiple Myeloma. 17 years later here I am. Hopefully for a while longer.

This coming week should have much cooler temperatures except Wednesday which looks like a 90 degree day.

Friday Things

The most exciting news is my labs came back and my kappa light chains actually went down slightly INTO THE NORMAL RANGE!!! I’m pretty shocked really. I don’t know if I can remember when I started going out of range( increasing) that it ever went down. Well, I’m thrilled for another month of emotional freedom.

I was going to skip swimming tomorrow since my new suit didn’t show up but decided to just go for it. My current suit is fairly chlorinated and not in good shape but I figure no one is there to look at me and when I get out I’ll put my towel over me. Hopefully, my suit shows up next week.

Today is a home day and just pottering around. My daily chores are done and I might do a quick vacuum. I made the pizza dough for tonight, so that’s done. I have a few new books to read from the library so that’ll be fun.

I’m working on a small embroidery project from Posie in Oregon. I bought a PDF of her March pattern in which all the proceeds were going to Ukraine. I like embroidering but my hands can only do so much until they start cramping. Not much going on in the decluttering world. I’m in a good place with what we have and use. There’s always more but then that takes another level of what I want to keep and what I want to pass on. I have a great vintage turquoise blue typewriter but it’s been shuffled around for years with me thinking ” oh it’ll be a great display”. But honestly, I probably won’t do that, and plus I don’t have any room for it on a shelf. So, I’ll put that aside for the hospice thrift store.

I’m beyond thrilled at Ketanji B. Jackson getting confirmed for the Supreme Court. At least some good news.

We spent @ $400. at Costco which included $50. for lawn fertilizer, beer( $29.00), and something else that was non-food?? Oh, I think it was AAA batteries( $18.00) and gallon freezer bags($ 15). So, I’d guestimate that @$300 was for food.

It feels like it’s been a spendy week. And of course, the tree is going to be $$$$. But what can you do? If we didn’t have the money, I guess we wouldn’t do it. We’ve been there so…Plus, everything seems so much more expensive.

Simple Sunday

We had a nice walk this morning and wow, Venus was right above the crescent moon. Very beautiful. Nobody was there initially and then the Le Foret guy( he comes out of the woods, honestly), showed up and then 2 others later. But we were done by that point.

This morning I’ve made the olive sourdough bread, a chocolate cake is baking, and I have a turkey breast in the crockpot. I’m just about done with the living room zone which BTW is just today and tomorrow and then Tuesday starts the entry zone. I would like to go to the nursery and get some kind of flower, like maybe some pansies. Our violets have gone crazy this year and are all over.

A week from today we’re heading to Bodega Bay. My son and daughter will hold down the fort. Both have to work so they’re here anyway. The weather looks nice enough with some wind which isn’t unusual. There are no hookups at Bodega so it will be l or solar.

I have my labs later this week and then I’ll get my results next week. I see Dr. L in mid-March. I would be pretty darn happy if my numbers stay about the same. Speaking of which, March 1st is my 16th re-birthday. Hard to believe, I was going in today and then getting Melphalan, and then on the 1st was when I got my stem cells. It’s really the melphalan that does you in It was hands down, the worst episode of my life. I remember we had terrible storms and looking out the window from the BMT unit over to the freeway and watching the rain and wind go sideways. That part of Sutter hospital has all been redone since then and actually the whole building I first got my chemo in was torn down and is now the Children’s Hospital.

Frugal Friday

It’s been interesting not thinking about groceries on this low-budget food month challenge. This week, so far, I’ve spent 34.99. The 34.00 would have been even lower but B went to Safeway and bought 3 giant oranges for 4.97. It was an honest overlook as per pound it wasn’t too bad but they were very large so it weighed more. The same with apples. That’s ok, it was still a low-cost shop. Today I need to get some mozzarella for pizza night and I have a coupon for some free bananas. I think the biggest challenge is just mental and adjusting to I don’t need anything at the store or to build up the prepper pantry. Like I said, I’m trying to have us eat down both the freezer and pantry. Next week I plan on using some turkey for chili and then look at what else is in there. Overall, it’s been a good challenge.

We did fill up both buggie and the Santa Fe and gas is pretty steep at$4.59 to 4.79. per gallon. I try and fill Bugs up only once a month as I only drive that to Auburn and back.

Last week was an unexpected oak firewood purchase since we needed it and we saw it down at the corner where someone had a trailer full to sell. I wasn’t super happy that it wasn’t quite a cord when he dropped it off and the guy should have known. But he did drop off some extra after we complained. But even then I still don’t think it made up a full cord which is 4x4x8 and looks pretty impressive when you see it.

So far this morning, I’ve made the pizza dough, fed my sourdough starter, washed 3 shelves in the refrigerator. I’ve done some email stuff and checked LLS( Leukemia Lymphoma Society). Sadly, right now there is no funding for myeloma so my grant can’t be re-upped. I’ll keep checking every day because funding does come in on a daily basis. Still, that’s a big hit for us if I’m not getting my insurance covered. Hopefully, it’ll come in soon.

I don’t have any projects going on right now and feel a little adrift. I like to be working on something and nothing seems to be jumping out to be done. I’ll think about what can be reorganized or done differently. The kitchen always can use some organizing.

Here’s the last amaryllis bulb that’s blooming. I think this one is the prettiest so far. I’m still not crazy about them and won’t order bulbs next fall.

I plan on going into the pet bookstore this morning and dropping off some books and seeing what looks good. I still have a few PD James in my bedside table.

Simple Sunday

Another week of beautiful weather. I’m sure glad I don’t live in ‘snow country’ back east. Having grown up in NY, I remember snowy roads, ice storms, etc. But at 18, I left for Arizona and that was that.

The sourdough olive bread came out delicious.

I am having tons of fun trying these new bread recipes. I’m slicing and freezing about half of each loaf. I may need to experiment what’s the best way to freeze. Double wrap? aluminum foil? Not sure. Any bread bakers out there with suggestions? Up for today is cran-walnut sourdough!

I plan on dropping off Goodwill this morning and then hitting up Target for a wastebasket for the laundry room. I also want to pick up a faux sprig of apple blossom for the front/side door grapevine wreaths since I’m in the entryways this week. I think the week is split with the kitchen zone on Tuesday the first.

My favorite Youtuber, Minimom, in New Zealand was trying out a new cleaning system from Clean Mama. She’s very popular and has a huge following. I copied some PDFs for cleaning weekly and thought I’d try it but after writing it down, I felt it wasn’t going to work for me. Basically, she does have daily tasks and weekly ones. But for instance, once a week it’s the bathroom, once a week vacuum, etc. She also has monthly ones. I think it’s a good system if you have a large house and or family. For me, I felt it was over-complicated. here’s the link Clean Mama. Funny, you open the page and it says “cleaning doesn’t need to be complicated.” I think she has a good method, just not for my house.

Tomorrow I have my labs so I should know by the end of the week how much of a rise my Kappa light chains go. I hope it’s just small. If it follows the previous pattern it took, the rise is slow at first and then picks up and rises more quickly. I have a pretty good sense of how my body feels so that will also be an indicator. I don’t think it will be as long as last time since I’ve come out of remission so much faster( 6 months as opposed to 4 1/2 years. ) Oh well, it is what it is.

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.

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.