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

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

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.

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.

June 15th, 2005.

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

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

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

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

It is what it is.

Spring time busy.

There’s lots going on in the gardens and the yard. Flowers are blooming and all three lilac trees are in full bloom. This has been a really good year for flowering trees. Out Cherry trees maintained their blossoms for weeks which was unusual. Now the lilacs are in full swing and very full. The white roses are just starting to bud and a few have flowers. The Cecil Brunner looks to be ready to explode with pink blossoms.

Today I plan on applying the redwood stain to the new fencing. I’m going to use a small roller so I think it will go quickly but I’m not sure how much/far the gallon will go. It certainly wasn’t cheap at $58 a gallon. The garden shed is nearing completion and I have bought the same house paint to paint that. I’m still not thrilled with the way it’s positioned but done is done. We still need to get some roofing to finish the shingles. We had some left over when we had the roof re -done so we just need to get 2-3 more bundles.

The weather is stellar right now with this afternoon being @ 80 degrees. I plan on BBQ some chicken and tofu.

I need to write up my monthly menu and check the freezer. I know I’ve used up quite a bit and when we were in New Brighton my daughter also used up lots of frozen things so that’s good and I can write a list of what needs to be replaced.

After my doctor visit yesterday, which went fine, I stopped at Trader Joe’s in Roseville. I bought some bread things,bagels,pita bread, sandwich bread, some veggies, some frozen things too. TJ’s is great for snacks like sesame sticks so I got a nice variety.

The doctor visit was fine. He said to lower my Dex( from 16 to 12 mg) so it’s maybe not so intense. That’ll be nice. He also said we’ll just wait and see about Round 6. I think if the Dex is more tolerable he’ll go for round 6. I guess we’ll see. All my numbers were still great and my ratio even went down to 1.3 since Lambda went up slightly. So I’m pleased and plus I feel pretty good overall. I do feel pretty lucky that the cancer is being wiped out by Velcade. Unfortunately, there are always rogue cells left behind and that’s why relapse is inevitable. But that’s not now and I refuse to think about something in the future I have no control over.

Five on Friday

Finally, it’s 2021. I’m not sure how great the year will be but I’m hopeful. I start Velcade mid month, as expected. I asked about getting my shots in Rocklin which is about 25 minutes away, and he said sure that would work. Mercy ( or Dignity Health),has a satellite facility there and it will make it easier. Unfortunately, I’ve fractured another rib so it’s smart that I’m starting now. Fractures, in case you don’t know about Myeloma, are one of the damaging aspects of this cancer. I’ve had multiple rib fractures, so I know what it feels like. Unfortunate, to have it happen right now and also quite painful. It limits how much stuff I can do around the house. With rib fractures there’s not much you can do. If it’s a vertebrate or another bone they can some intervention. Oh well, I’m just glad it’s not a vertebrate.

We had a fun New Years eve with sub sandwiches from our Holiday Market. We watched the newish Starsky and Hutch and it was fun. We didn’t crack the champagne but will today.

Budget wise, I came under $800 on groceries including holiday food and alcohol. This is the lowest I’ve had since the pandemic started and I was stockpiling every month. Into January I’ll try and keep it between $700-800. That includes food, non food, and alcohol.(mostly wine and some beer). I’m planning a Costco trip mid month so we’ll see how much that adds if I add in prepper stuff. I’m not planning to but will stockpile a few things like coffee, Rosarita veg. beans, TP, and a few other things. The rest is just stuff we need like cheese, fish, bread etc.

I’m starting another round of decluttering. Mostly this is paper stuff. I’m going thru all our old receipts, medical things and throwing away anything that isn’t needed. Also, little stuff in drawers, like old pens, screws etc. It probably won’t add up to a lot but I’m motivated to do another sweep. I also started a bag for the food bank with food I know we’re not going to really eat. ( I see you canned chicken:) ). There’s nothing big I’m decluttering like furniture since everything we have has already gone thru multiple layers of decluttering. Still, I always like to look at things from a fresh perspective.

I’ve made up my monthly meal plan.

I’m renaming Wednesdays, Pasta Wednesday since that will be my Velcade/Dex day. It’ll make it easier for the others to cook if they know what the plan is. 🙂 I also dashed out to Target to get one of their simple calendars. I loved the one from last year but they didn’t have quite that style. It’s funny how such a simple thing like a minimalist calendar is so hard to find. I checked all over and the nicest were like $20 and up. Even on etsy they were expensive. So Target had just what I wanted for $5.00. It was pretty empty just like I hoped.

Simple Sunday

We were supposed to have a PGE blackout tomorrow but it seems that the last message I got said it may not happen. We are supposed to have 70 degree weather and some wind. JFC, this is December 6, where is the rain?? I guess we would be ready. We do have what we need and our heat is mostly wood and propane so it would be ok. I just hope we get some kind of rain soon.

This week is the kitchen zone for Flylady followers. It is my biggest zone and takes the longest. Still, clearing your counters and keeping your sink clean will go a long way.

I have a Tartine bread dough started and will do that tomorrow. I used up most of the pieces I had frozen so I’m ready to do a fresh batch.

We been having fun opening the Bon Maman advent jams. They are the cutest little jars which of course I am saving for?? Well, I’ll think of something. Seeds? spices?

I’m planning on making a curry for dinner in my new Staub. I ‘ll make some rice to go with it and also a tofu curry.

Tomorrow I have my labs and I am bracing for the worst. I think if it is under 600mg/L I’ll be happy. Well, not happy but ok. If the same pattern emerges though it will probably over 600. Guessing almost 400mg/L now, so adding 50% ( that’s what it’s done,) will take it to 600 or so. maybe I’ll be lucky though but who knows.???

Well, off to do the first fold on the Tartine bread.

Thursday stuff

Yesterday was my doctor appointment and it went well. I’ll have my 8 week labs around the first week of December, then see him right after Christmas, then start Velcade/Dex in January. He did mention that there is a pill form of Velcade but since that would be a tier 5 drug, I just don’t want to deal with that. So the shot isn’t bad and neither is the drive. ( We got there in 50 minutes yesterday with NO traffic. So it’ll be 3 weeks on one week off. I’ll be ready!!!

I am having lots of anxiety about the election next week, along with the rest of the country.( well, intelligent people who can see Trump for what he is). It’s just a lingering underlying stress as to what’s going to happen. It’s not keeping me awake at night but still, I read the news compulsively for clues. Well, I guess we’ll know soon enough.

We shopped at Trader Joe’s in Roseville after the doctor appt( which was why B came with me). It was pretty packed with people but everyone HAS to wear a mask so it was ok. I loaded up on lots of things. Some prepper stuff like canola spray and tamari, and some just regular food. We were home by 12 noon so not bad at all.

As I mentioned, we adjusted our walk time till 6 so as to try and avoid jerk walker. He’s still there though and just as abrupt but at least walking the other way has made a huge difference. 6 am is nice because by 6:30 it’s predawn and the sky is lightening up. Sunday is daylight savings so I figure we will just walk when we feel ready and see what time that ends up being. I’m guessing the jerk will go by the darkness not the time. One example of him still being a jerk. So the confrontation was about his not using a flashlight, right? So he has been using one. Then this morning I saw him have it on and then as he approached us he turned it off. Uhh…passive aggressive anyone????

Tonight my son is going to make us an Oktoberfest dinner of Bratwurst something( not sure yet exactly what he’s doing) but at least I don’t have to cook.

I have a loaf of rye sourdough baking and it didn’t puff as much as I’d like but it still tastes great.

We are still getting lots of eggs and I’ve been keeping up on using them. I put it out on Nextdoor neighbor but no one answered. I’m guessing with the pandemic when everyone was buying chicks, and now they are all laying eggs. It’s okay, in a few months they will slow down once it gets cold.

I have loved lighting my beeswax candles for dinner time. I have lots of pumpkins on the table and around. We’ve been having a fire every morning too. It’s been about 45 degrees out, so chilly.

Friday Stuff

There are fires everywhere here in California. There is smoke everywhere and it’s best not to be outside too much. We did walk this morning but only a mile as you could see the smoke haze as it got light.  Vacaville is around an hour and a half or less away so that’s where most of the smoke is coming from. There’s also the fire near Reno and the smoke is filling the Tahoe Basin. This was the week we were supposed to be in Tahoe so perhaps it’s all for the best. So many people were getting evacuated that I -80 was shut down in Vacaville and Fairfield. Pretty scary stuff.

I feel somewhat optimistic after the DNC that perhaps the winds of change is toward decency again. But after the last election, it’s hard not to feel like something awful could happen. I honestly do not think our democracy would survive another 4 years of Trump. Extreme? maybe or maybe not.  We’re planning on taking our absentee ballot down to Auburn and drop at the office of the registrar. Easy to do and we’ll know its there.

I needed to do a fill-in shop before I do Costco at the end of the month so I decided to do Walmart pick up.  It was actually great. I forgot how easy it is to do and I love I can add on since I forgot a bunch of things and then everyone wanted to add a snack or fruit or something. I ended up just over $100. So that’s great. If I bought the same stuff at Bel Air it would easily be $200. One new thing I’m doing that I got from the Tightwad Gazette is to keep track of price points. It’s quite interesting to see the price differences. I’m sure if I was a couponer I could do better. But so far Costco still has most store prices beat.  For example, a half-gallon of organic milk runs about $4.79 in the stores. At Costco 2 gallons is just over $10.00. That is a huge difference.  There are lots of other examples too but what is at issue is you need either a second refrigerator or a freezer or have 10 kids which will drink all that milk. We just freeze the milk till we’re ready to use it.  Anyway, it’s been a fun exercise it frugality.

My right side ribs are pulled again and I’m having limited mobility with it but since I’ve had chronic rib fractures due to Myeloma, I just figure It’ll pass. Of course, the concern with myeloma is it does affect the bones so fractures are a common result of this cancer.  I see my doctor next week so we’ll see what he says.

I’m still making some freezer salsa and waiting on the next batch of Roma tomatoes to ripen. Probably by Sunday I’ll be able to make some more tomato sauce.  We definitely will have plenty to get thru the winter. I’ve been drying basil too since we have a nice crop this year.

We’re in between projects and since it’s been too hot outside to work on fences or anything for that matter. In the house, I still want to get painting done but we need to go get that paint at the Benjamin Moore store and that’s down by Trader Joes in Roseville. So maybe next week. Also there are a few pine boards in my office that need replacing so I’d like that to get done.  We are also planning on redoing our outside laundry since the floor is in bad shape. It’d be nice to have laundry somewhere in the house but there isn’t any space for a washer and dryer unless we built an addsition which we don’t have money for. Well, I’m grateful for what we do have.