Category Archives: Myeloma

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.

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:)

Simple Sunday

Posted in California, cooking, Flylady, Halloween, instant pot recipes, Myeloma, simplicity, swimming, Walking by

HAPPY HALLOWEEN!!!

A nice homemaking day.

I have an Instant pot of Potato leek soup cooking, and I made a pork roast in my Staub. I added potatoes and carrots and onions from the farm. I don’t usually do this with pork and usually just do pulled pork but I wanted to use the Staub so I looked for recipes online. It looks good. I guess the test will be later on how tasty is it.

Then I did my morning reset around the house. The Flylady zone this week is the entryways and my office. I don’t need to do much in either area, but I’ll wash the windows and tidy up some.

I went into Micheals to get some worsted yarn to make socks with my new little sock loom. I bought 2 different types of wool and can’t quite tell which is the right one to use. I plan on using the thinner wool first. This is a little wood contraption( loom) that you knit on. My hands can’t do the repetitive knitting action or they cramp up so this is what this loom is for. I guess we’ll see how it goes.

It’s all clouded over now whereas this morning we could see stars and Orion’s belt clearly. Rain is forecast for tomorrow.

This week I have my mammogram and my appointment with Dr. L on Wednesday in Sacramento. I plan on swimming Tuesday and Saturday if I can. The new Trader Joe’s just opened in Rocklin so I want to stop and check it out. I’m excited that it’s that much closer to us and the exit is where Target and Walmart are. ( well, Walmart is on the opposite side of the freeway). Everyone has wanted TJ’s to come into Auburn but I think the demographics weren’t there.

We’ve been having nice evening fires on the patio. The weather has been perfect for sitting out for just a bit after sunset.

The week ahead

Posted in Blood test, California, cancer, Myeloma, swimming by

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.

Frugal Friday and other things…

Posted in budgeting, budgets, California, Myeloma, swimming by

It’s been an okay frugal week. All the first of the month bills are out and done. The rest like PGE,water, ATT come a little later in the month.

We had the house insurance due and if you live in California you know that in our area most insurers have cancelled policies so you have to do what’s called the California Fair plan. This is in addition to the rider with AAA. This year it went over the $2,000 mark but for some people it’s WAY higher like in the 10,000 and up range. I’m not sure but I think it’s related to the size of your house and maybe the fire risk in your area. Anyway, that’s a big expense.

After swimming I went to Winco which is across the street and did a small shop. It has been very convenient to do this and except for Walmart, you cannot get groceries etc cheaper. Winco is employee owned which I think is great and they do not take cc, only debit.

I had my dental cleaning and all was okay. sitting in that chair for an hour though really takes a toll on my back. I wonder about people even older and what they do to accommodate them. Anyway, I don’t need to do anything right now and go back in about 5 months.

I filled out the online form to donate Vannie( the dodge Caravan) to Capradio so she’ll be gone probably with in a week. Actually Vannie runs fine and I think would keep going but there are electrical issues and the blinkers don’t work so safety is the main reason we’re donating. Plus, we bought the truck to do the things Vannie did ,so there’s that. Plus, I just don’t want something sitting in the yard if we’re not using it. My son still had ideas about camping in it, which he did many times, including taking it all the way up to the greater Seattle area to visit a friend. But now the time has come. I’ll miss you VanGo.

This morning I’m helping B load up the truck and go to the local drop off, which conveniently is right at the end of our road about 3 miles. This must be our 6th trip this year with stuff!!! I threw in quite a bit. I tend to be more ruthless than B, who thinks,sometimes, maybe something can be reused. Which in itself is fine unless it really is just junk:)

I finally saw my labs and they were all in the normal range still but my Kappa was close to the high normal, so I’m guessing next month it’ll go over. I guess after that it’ll be month to month watching if the increases start getting bigger which is what eventually happened last time. I can’t say I’m not disappointed that I only had from June to November in remission but I’ll take what I get. It’s a strange place to be knowing once again, I’ll be back in some kind of treatment. sigh:(

End of September

Posted in Blood test, camping, cancer, cooking, decluttering, Myeloma, swimming, Walking by

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

Posted in Blood test, cancer, cooking, Multiple myeloma, Myeloma, seasonal things, swimming by

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.

Friday things…

Posted in budgeting, budgets, California, Myeloma, prepper pantry, Uncategorized by

I’ve added some things to the prepper pantry that I got at Walmart the other day. I think most of what I think we can use/ need thru the winter months is in there now. I also bought 8 Mountain High freeze dried meals as emergency meals if ever needed due to fire or other disaster. I still need a few things from Costco that I forgot the other day like maple syrup, tomato paste, and ? So I may pop in there or have B pop in some time after he gets back from Salt Point.

Today B is going to the bank to get the copy of our bank statement for LLS. You , of course, need to provide proof of payment. I’d like to get it done by Sunday so it’ll come in before the end of the month. It usually takes 2 weeks minimum. I am grateful to all the people who donate to LLS as they give us these grants for reimbursements for insurance, prescriptions, and lots more. When I was on Revlimid( an extremely expensive Tier 5 drug) they covered my OP expense. Thankfully, I’m not on Revlimid anymore and Velcade was covered by Medicare as it is in clinic infusion.

I just finished the pickled jalapenos and am about to start charring the Hatch chilies. I’m planning on just freezing those and not do the whole relleno thing. They do freeze well.

I sold a few Waldorf books to the young mom who bought most of my Waldorf toys. Nice young woman and I gave her all my wool roving and needles so she can make some felted animals from the book I sent to her. I have some wood toddler toys as well but her kids are older so I’ll donate them to Cancer Thrift.

Budget wise, Costco took us right to the $550 mark for the month. So I’ll end up probably close to $650 I think. Except for the small Costco trip, I don’t need too much except maybe some veggies. I might go out to our local CSA farm and get some. They are more expensive but totally worth it as it is all grown right out there in the fields that used to be Simpsons Ranch. The Simpsons homesteaded this property in Meadow Vista sometime in the early 1900’s. The Maidu Indians lived on this land seasonally and there are many grinding rocks in the fields where they would crush the acorns to make a flour for winter. Mr Simpson wrote a book called”OOTI” about the Maidu. What is wonderful is that instead of selling and making a shitload of money the land went to the Placer Land Trust and the people farming it are ‘renting’ it as a farm.

Our skies continue to be filled with high smoke clouds. It’s not down low but it is our there and the sun is a ball of orange.

I plan on using the Ooni tonight for pizza though as the temperature looks to be @ 93. So not too bad.

Velcade, Round 6, shot #3.

Posted in cancer, cooking, decluttering, instant pot recipes, minimalism, Multiple myeloma, Myeloma by

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.

Posted in cancer, Multiple myeloma, Myeloma by

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.