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

R.I.P. dear sister.

My sister, Heidi, died Thursday after a very brief and sudden flare-up of her lung disease. She started to have serious trouble breathing Christmas night and by the next morning was in ICU on oxygen. She wasn’t expected to survive. She seemed to rally some and was scheduled to come home to be on hospice but died immediately after the transport home. Her family is quite devastated especially Richard her husband of 53 years. Heidi was funny and loved her kids and grandkids.

We had some fun times when she came out to visit us which started the year of my SCT and she came out to help Barclay with things since I was not up and about. After that time she like to come out as it was a way to ‘get away’ from things and do something different.

She was very concerned when Barclay was diagnosed with MDS and was in contact with us frequently. She developed the Interstitial disease lung disease about 4 years ago and was on oxygen. She really became house bound for the most part.

This whole past year I knew something was wrong as she didn’t answer emails or texts too often. She seemed very forgetful. I’m not sure that this was related but it seems so.

It’s all a bit of a shock when things happen without warning. If it wasn’t for Covid and Omicron surges, I’d fly back now but as it is I will try and go back in the summer.

I sent some flowers but that seems kind of lame but didn’t know what else to do.

In the same vein, Philip, our brother was killed in Viet Nam on January 7th 1968. So memories of January 6th and 7th will be sad ones.

None of us get out of dying and it’s always a reminder of how precious life is and to try and live each day to the fullest in whatever way that you can, and with whatever circumstances you have.

Five on Friday

  • We’re still waiting to hear on the RV. I’m guessing the one that came in was the bunk bed one as I saw it on their website. That’s ok. The longer the money is in our savings the better, I guess. It’s a big leap for us to use savings but as I said( mostly to myself), if not now , When?? So that’s it. Especially after fellow blogger Teresa just up and died suddenly, who know how much time any of us have. I wouldn’t risk using more money than I feel we can handle though. We only have SS as income and some retirement savings but relative to most retirees, it’s probably very miniscule. But regardless, we’ll manage somehow or another.
  • The 8 mg of Dex was pretty easy to take. It’s still Dex so there is that. Next week I plan on doing the 12mg again.
  • We fired up the Ooni because it said do a 30 minute burn at full temperature. So that’s done and I have dough ready. I plan on doing 3 pizzas :marguerite, pepperoni, and a broccoli bacon/ veggie bacon.

I wrote on the chalkboard, 30 pizzas at $10 will pay for the Ooni. It’s probably less than 30 since most of the wood fired 12 inch pizzas like at Mod pizza and 965 Blast are more like 12.99 and up. But I figured I’d just do it at $10 and times that by 30.

  • Our weather is supposed to cool slightly which is nice. This season has already been too hot and dry. I am really worried about fire this year. We have a good defensible space but even so a big fire could just blast through.

A very sad passing.

I ,along with the many many others, are reeling from the passing of Teresa Kasner. She passed away quite suddenly and frankly, it’s a shock. I’m sure her husband Dayle is numb with grief. Her wonderful children and grandchildren too. I’m sure her little beloved Cairn terrier , Mocha, is lost without her.

She was an excellent blogger with posts that were always interesting. I was inspired by many of them. I bought lavender soaps from the farm across her road when she said how terrific they were. Aslo, I loved those little violet bottles from England so I went on Ebay and bought one too. She really was talented for bringing in her home life, Dayles cooking and lots more to all of us.

Life is precious.

We will miss you Teresa.

Our sweet Ollie…

The time finally came and Ollie was put to ‘sleep’ yesterday. Not sure why we say’put to sleep’. Really he’s dead now but his little body just couldn’t go on.

Ollie was almost 17 and part Maine coon. At one point he weighed over 20 pounds and was a big boy. He was also my daughter’s surrogate child so the loss is keen.

About 5 years ago he started getting a lump on his neck. She paid over $5,000 in diagnostics ( yes that is correct). And everyone agreed it was too dangerous to operate on and it was only a matter of time. Well, he fooled everyone and made it that long.

Almost 2 years ago in the summer, he had an episode where he couldn’t swallow. He was a goner …almost. We called the mobile Vet and she came out. But right before that, I whacked him on the back for 2-3 minutes and he spit up a huge gob of spit. When the Vet got there he was doing much better and we left it at that.

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Ollie loved everyone and was the sweetest cat. He was a rescue and now his rescue buddy Finwe( Winnie) is alone and he too is 17 so, I guess, he’s next.

Sad days.

RIP Bonnie Doone

Yesterday did not go as planned.  I was getting stuff ready to go to the gym and Home Depot and I noticed some red spots on the concrete patio. I thought it was BBQ sauce as I had just taken in the utensils from the night before, and thought it was a drip.

I called my daughter out and said: “Is this blood”? She said yes and we went to find Bonnie. Now Bonnie is a 14-year-old McNab border collie that she rescued 3 years ago almost exactly. She has been a good dog although she has been an expensive dog with anti-seizure medicine monthly a urinary medicine too. Both have been my daughter’s expenses.

So back to the moment. She looked at her and saw she had blood near her back end and a hole that looked like it was a cyst.  It didn’t look good. So we decided to head to town and think about what to do. We discussed going down to Loomis Basin Vet which has emergency services but decided they would go for testing etc( they are into the money), then the other option was to wait to today, or the third option, call the mobile vet we’ve called before.

We knew Bonnie wasn’t going to improve and it looked like she was in pain and standing funny.  The vet said it was cancer tumors pressing on her chest cavity.

She went peacefully with Sachi petting her head. It’s always a sad day when your friend goes to the rainbow bridge. Over our lifetime, we’ve had many pets and deaths.  It doesn’t get easier but there is more understanding.

Now we are concerned for Rocky, her littermate who is the black and white border collie. He’s been looking for her and seems lost. He’s also deaf so he always took his cues from Bonnie.  So that will be tough. I have a feeling he will go too in the next 6 months. He is after all the same age.

So the day ended up not simple at all and sad.UNADJUSTEDNONRAW_thumb_386.jpg

Simplifying even more…

While we were camping we went thru the tent trailer an got rid of all the weird kitchen stuff I had in there. A whole box worth. I mean really, am I going to use a vegetable peeler while camping?? Plus, we took out a box of dishes as we really only use the same 2 over and over. We probably eliminated 3 boxes of stuff including some clothes that were for “just in case’.  That was really great to do. It’s all dropped off at the Goodwill and I didn’t even go back thru to see whether I wanted it in the house.

I started making some homemade bread again. I used the Zojirushi to make the dough and then bake in my bread pan. My daughter got me a fancy new bread knife for my birthday so I had to make bread. It was amazing to cut the bread. It sliced thru like soft butter.  It always surprises me how having a good tool for cooking or like a sharp knife makes cooking so much better. I don’t use a lot of fancy tools but what I have does make the job of cooking so much better.

Recently, I got rid of our rice maker and started using my Le Creuset.  Organic long grain white rice takes only 18 minutes and then let sit for 15 minutes.  It’s actually quicker than the rice maker. So one less bulky thing in the kitchen.

Yesterday i cleaned out more pantry stuff. I have a good size bag to give to the food bank.

I had my labs Monday but no results yet so I’m guessing he’s out of town. That’s the only time when my esults get delayed. I’ll wait till Thursday then I’ll call his nurse.

Today I’m washing the white couch covers as this week is the living room zone.  I also need to do the outside window as I do these quarterly.

The garden is done and I am done with canning tomatoes. There are still some apples but they can wait. Last night we had butternut squash soup with our very own butternut squash. I also made a spaghetti squash and had that with butter and sage.

An old friend from my ‘metaphysical’years got a hold of me last week. It was nice to reconnect. Her sister had just died and I think it caused her to do some thinking about times gone by. We plan on getting together in a few weeks. She lives in Reno so not too far away. I will drive up for lunch!!

 

 

Take Time…

Take time to be quiet,

Take time to walk in nature.

Take time to be with your loved ones,

Take time to be kind….

My neighbor died the other day. She was very brave thru out her 5 years with stage 4 Ovarian cancer.  In January her blood transfusions weren’t working any longer so she knew it was time.  She did have hospice come in and I’m sure they were a big help to her husband. Leslye was only 67. She had been an avid horsewoman, a health food nut, hiker, and probably a lot more things than I know. In fact, we weren’t really close but we had known them(her and her husband) since the 70’s and when we moved here 23 years ago they became our neighbors.  It’s been somewhat depressing even though I am philosophical about it, none the less the reality of her going is still raw.

It’s raining today and it feels right. Kinda gloomy and dark. Matches how I feel.  I know she did so many things in these last 5 years. They went to Hawaii twice, traveled and much more. She also did the ‘death decluttering’ getting rid of her kyacks, horse, Johnny, bikes, clothes and made amends with her 2 children.  She really died in a dignified way and conscious right to the end.

Well, I will let myself feel sad and then it’ll be another day.

Being Grateful…….

Having survived now for 13 years with Mulitple Myeloma, I know how lucky I am.  I am grateful every day for my life with my wonderful husband and children.  My son was almost 11 when I was diagnosed and my daughter almost 20. So the many years I’ve had are remarkable. Graduations from High School and college.

Some people using the bullet journal method write down what they are grateful for each day. Some do it a little OCed.  I don’t need to write it down to be reminded that the sun comes up or it’s raining and I’m fortunate enough to see it and experience.

Especially since I am enjoying this remission period. My next labs are coming up in the first part of April. Who knows what they will bring but I can only hope they are still good. Although, I don’t “hope hope” like in praying or anything.  Because your blood will be what it is no matter what you hope for. It is what it is.  That was a hard lesson for me when I was first diagnosed.  It took many years to realize basically nothing I ‘hoped’ for essentially made a difference but still one needs to hope. I think it’s a human element.

My neighbor that I’ve mentioned before in my ‘Death decluttering’ blog, is with hospice now. She only has a small amount of time left. I talked with her the other day. One thing that struck me was she said,” this wasn’t how she envisioned her retirement”. She’s only 2 years older than me and was diagnosed with stage 4 ovarian cancer 5 years ago.  She made it longer than a lot of cancer patients.

I’m one of the lucky ones and believe me, I am extraordinarily grateful. Not in any religious sense, just grateful to have lived to see another day.

 

BE GRATEFUL

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the journey towards minimalism

Life is certainly a journey with its up and downs and in-betweens.

For me, I guess, it really did start with ‘death decluttering’ ….ha ha ha.  Before I was diagnosed in the early 2000’s I became obsessed with collecting things from the 30’s,40;s 50’s and 60’s. I had a lot of fun going to estate sales and looking for buttons, Melmac, old fans, dishes etc. I had some really nice stuff. And my absolute love is mid-century furniture and still is actually. image

So in 2005 when I went thru the gut-wrenching process of getting diagnosed( I would not recommend a biopsy of a plasmacytoma in the back with a neurosurgeon using a hammer), I had a very tiny house with lots of stuff.  With a prognosis of 3-5 years survival, I think at some point, I just wanted it gone but it wasn’t right away.

It probably wasn’t until @ 2010 when I relapsed that the idea sprung into my head, that I didn’t want my kids or husband to deal with this stuff. So….it slowly was tossed, given away or donated.  Thus, the ‘death decluttering’.  Don’t wait till it’s too late to purge, and simplify.   Really, really, DO IT NOW.

 

I still have more than I’d like. In October my challenge was 1000 things gone. I got to 700 and then I just didn’t find any more or at least motivated too.  So, it is a journey of discovery.

I guess there is a balance with it too.  I kinda need a couch at this point.  There was a time sitting on the floor was fine but now I’d probably need a crane to get up so that’s out.  Also, I’ve always loved all things Japanese, so I wanted a low table on the floor but again, crane anyone?

Where am I with it all?  I want only what I use and need and fits our house.  We have given away thousands of things and it feels so good.

I am enjoying adding house plants which are adding oxygen and greenery. A win-win….

 

Dinner is leftover wild rice chicken soup and twice baked potatoes with a salad.