Category Archives: Multiple myeloma

Thankful Thursday, Frugal Friday and Saturday sum-up.

Posted in budgeting, budgets, California, camping, cooking, LLS, Multiple myeloma, Myeloma, pets, travel by

THANKFUL THURSDAY

  1. I am thankful we had a safe drive home from Capitola and traffic was not too bad at all. We made it home in 4 hours with a stop for gas and something to eat.

2. I am grateful that B does the driving and set up and take down of Rubi.

3. I am thankful the weather was beautiful and we had some lovely days in our camp spot. With the influx of kids, bikes, and loud people, we left a day early and I’m grateful we have the sense to do that and not just say” Oh, we paid for the night, we should stay”. We do not enjoy it when kids are throwing balls in front of the trailer, riding bikes, etc, while their parents are loud with partying.

4. I am very grateful to my daughter for taking care of the house and yard. With the chickens and cats, it can be a lot.

5. I am so incredibly grateful that LLS opened funding for Myeloma and I got my application in. It’s pending, waiting for my doctor to fax his form.

FRUGAL FRIDAY

We spent very little this past week while camping. We didn’t eat out except for Gayles and that was just coffee and a danish. We ate the rest of our meals in camp. We went to the grocery store for a few things and that was it.

If you figure a week almost in Capitola, and we had just the cost of gas and some food, it’s a low budget getaway.

Overall, the budget has been good this month. But some things have caused some alarm. I’ll describe that in Saturday Sum up.

All the monthly bills are done. I’m working on keeping a zero balance in the bank account and it’s right where I want it for now.

It’s a huge savings for me to have my LLS grant since it covers all my insurance costs. I’ll be able to have a look back of 90 days so for reimbursement.

SATURDAY SUM UP

Well, that was the frugal stuff.

The night before we left my son notice some water(moisture) on part of the kitchen foundation. Of course, I freaked out and had B use the giant flashlight to look under there. There was a slow drip from the kitchen water pipe that will need to be fixed. Now part of the problem is our house foundation is not that great and as you go from the back to the kitchen area it gets very small to access. When we had this work done the person had to use a very long something to put those pipes in place. So now we’re facing a difficult challenge of getting a plumber to go under there. B is going to suit up and go in to try and clear some old pilings of dirt. But he isn’t a plumber that can weld the copper pipes. We put a call in to someone while we were in camp and we will try and set up an appt for next week to have him check it out. I tremble to think of this added expense.

The good news is the truck will go in next week to fix the AC and it’s covered by the extended warranty we bought. That expires in August so right in the nick of time.

Today, I’m going to pick up a Walmart order that has some camping stuff( toilet paper, and small propane bottles for the Weber). Plus I need to dust as the pine yellow pollen is coating everything in the house.

While we were gone a red fox chased and almost caught Ciri the cat. It was caught on Arlo and it’s scary to watch. It actually jumped the gate and chased her into the laundry rooms. We’re guessing it has a litter of kits nearby and that’s why it was so aggressive.


Wednesday stuff

Posted in Blood test, bread, cooking, decluttering, Multiple myeloma, Myeloma, Uncategorized by

The pool was busy again even though there was a sign about Spring Break. I still had a nice swim. It will be a challenge to go over to the outdoor pool but I’ll just have to wait and see how that goes in June.

I’ve been going through some decluttering again and have posted my tortilla press and some houseplants on our Pay it Forward group. I used the tortilla press maybe half a dozen times but it’s not really my thing. The houseplants are not thriving where I had them( the sunroom) and I’m not into just having plants stuck around anywhere. So I thought I offer the 3 to someone who can make use of them.

I’m feeling the urge to go to a new level of decluttering things that aren’t absolutely necessary. It’s, to me, just levels and layers of decluttering and simplifying. What was important even a few years ago, just isn’t anymore. I want the simplicity of useful items and that aren’t just single purpose appliances. I haven’t put on the bread maker yet but it is on my to do list. Also, I really want to pare down to the ‘poetry’ and only have what is essential. That may include getting rid of any duplicates or things that are just lying around. I don’t have a lot of that but there is always something.

A fresh loaf of sourdough.

Some honey in a new honey Ball jar. So cute!!

Here’s the flowering cherry tree. You can’t really see where the top broke off but it’s in the middle area.

Well, tomorrow is my doctor appt. Not much to really talk about except once again when we might start treatment. As I’ve said my limit is when my kappa light chains get to 100. Right now they are at 46.1 mg/L so that was another 6 point jump. Normal high is 19.4, so it is increasing. 😦 I’m not sure what his assessment is but I’m not waiting till they are over 600 like last time. As long as the increases are small it’s ok, if they start doubling then it’s time. It does suck but what can you do?

Snow, Snow, and more snow! And a Re-birthday.

Posted in Bone marrow transplant, California, cancer, cooking, Multiple myeloma, Myeloma, Uncategorized by

Well, as they say,” the best laid plans of mice and men”. Totally snowed out yesterday. I -80 closed the next exit above us. It still is closed this morning. I went in for my labs and the computers were all down and not working. There were 8 people waiting for them to come online. I just said I’d reschedule. So at that point, it was just cloudy and I headed down to the gym. By the time I left, it was raining and VERY windy. Even the Santa Fe , which is a heavy car, was getting buffeted around. By the time I was home, it was snowing and then really snowing. My daughter opted to work from home. Today she’s going in to the college and it looks mostly like rain.

So, no swimming for me again. This is getting kind of old. But there’s not much I can do except NOT be out there with all the ‘stupid people’ trying to get either to the snow or somewhere. CHP was on facebook saying ‘do not try the back roads as they are just as bad as the freeway’, which is closed. So, I’ll go down to the market and get some lettuce and salad stuff since we don’t have any. I plan to make some soup for dinner.

I’m reviewing what I want to do food pantry wise this summer. I know I don’t need any more jams or marmalades. I might do some strawberry if the berries look good. We’ve been using the salsas so I will do that again. the chicken broth has been great to have pressure canned but I could freeze that too. I would like to do more flash frozen corn and maybe some other veggies too. I’m planning on starting a pantry book for just this kind of thing. I must have tossed the one I was working on thinking it was a different book. I think that was the book I started during the pandemic for price points like at Costco etc. That’s okay, most of it I can recall.

My 17th re-birthday!

My wonderful family.

So, 17 years ago, I was admitted into the Sutter General Hospital, BMT unit. This day is called -1, because you are given the high dose Melphalan. Then it’s the next day is day 0 when the actual Stem Cells are given. It’s actually very anti-climatic as it is a bag hung up and then just on the IV drip and it’s over. Then it’s just a waiting game. It gets very rough around day 4 and then continues until your WBC, RBC all your counts start to increase. Mine started around day 12. I was released day 18 but had to be readmitted the next day because of spiking a fever. But after that, it was just a slow process. Honestly, it took a year to really recover. But I am grateful everyday for science, medical professionals, and my family’s support.

Now I’m facing another relapse, but I’ve gotten more time than lots of other myeloma buddies I have known.

So another part of the journey begins.

Understanding Myeloma

Posted in Blood test, Bone marrow transplant, Multiple myeloma, Myeloma, Uncategorized by

I thought I would put in a description of myeloma to help people understand what it is how it affects the body. Just FYI.

an, also called multiple myeloma, is a cancer of the plasma cells. Plasma cells are white blood cells that make antibodies that protect us from infection. In myeloma, the cells grow too much, crowding out normal cells in the bone marrow that make red blood cells, platelets, and other white blood cells.

Multiple myeloma is considered treatable, but generally incurable.[3] Remissions may be brought about with steroids, chemotherapy, targeted therapy, and stem cell transplant.[3] Bisphosphonatesand radiation therapy are sometimes used to reduce pain from bone lesions.[3][6]

I’ve relapsed now 5 times, this being the 5th. Last time the Velcade worked practically instantly but disease progression does come into play and the cancer cells get smarter and more resistant. This will be my 3rd time on Velcade so it is questionable how effective it will be. One thing for sure is I am not waiting till my Kappa light chains go to 600+. That’s what happened last time. This time I will say Kappa over 100mg/L let’s start treatment.

Thankful Thursday: I am thankful to still feel good enough to swim and go to the gym. Right now probably the one symptom I have may be decreased energy and I do start to lose more hair for some reason. Other than that, I’m asymptomatic.

Frugal Friday

Posted in Blood test, California, cooking, ikea, Multiple myeloma, Myeloma, Uncategorized by

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

Posted in budgeting, California, camping, cancer, husband, Multiple myeloma, Myeloma, Uncategorized by

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.

Posted in cancer, Death, Flylady, Multiple myeloma, Myeloma, Uncategorized by

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

Posted in Blood test, books, California, cancer, Multiple myeloma, Myeloma, Walking by

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

Posted in Blood test, books, budgets, California, decluttering, Multiple myeloma, Myeloma, Political things, swimming, Uncategorized by

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

Posted in Blood test, Bone marrow transplant, bread, budgets, California, camping, cancer, Flylady, Multiple myeloma, Myeloma, travel, Uncategorized, Walking by

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.