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.

Five on Friday

I decided to not go with Frugal Friday today as it seems this has been an expensive week. It’s not daily stuff but more like the bigger things. Both DMV’s for the Rubicon and Chevy are due and it sure seems as if they are almost double what they were last year. Then our AAA membership will be due next week and that’s gone up. There is one other bill but I can’t remember right now. Oh, wait, it’s not a bill but I added on the camping trip to SeaCLiff in the fall on the CC and that was almost $500. SeaCLiff is the campground right down the beach from New Brighton but it is right on the ocean and double what New Brighton is. It does have full hookups so that’ll be nice. Anyway, that took the credit card up I’ll pay that in a few days. So lots of bills. The regular groceries, gas, etc is all okay.

I had my doctor’s visit yesterday and all is good. I’ll see him again in 2 months. There is nothing too much to discuss, but he’s always very attentive and asks about my issues( diarrhea, sleep, etc). After that, I headed up to the new Trader Joe’s.

I went to Trader Joe’s to get some snacks like corn chips, crackers, and salad stuff. I picked some wine, half and half, juice, some frozen things, and frozen fish. Last time I bought a piece of frozen salmon and it was really good so this time I picked up some ahi tuna to try. B went to Costco because they had a patio cover on sale. It was normally $159 and it was $40 off , so a very good deal. We have to have something over the patio as the sun in the summer blasts that area and we can’t eat outside unless there’s a cover. In the past, we’ve used the shade triangles but after a while, it just looks tacky. So this is a good thing.

We’re on a high wind alert and high fire danger today. It’s warm out @ 80 but it’s the dry wind that is potentially a problem. B did anchor the new patio cover with stakes but we might need to do some sandbags as well. Everything is drying out due to the wind. We try to keep the areas around the house green as a fire block but that means watering the yard.

Today is a home day with pottering around the house and yard. I want o clip the herbs and get started with drying. In our climate, oregano, and thyme are year-round plants but parsley, cilantro, basil, and tarragon are annuals. So I want to dry a good amount of each.

Here’s one of the cool rocks we picked from the beach. Lots of fossils and two cool holes. I try to always look for rocks with holes in them, not sure why.

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.

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.