Myeloma Blogs

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Please help by clicking on “Add your myeloma blog” to make sure yours is added.

If you don’t have a blog and you want one, write to me by clicking on the “Contact” link.

By the way, please make it easy for people to comment on your blog by not requiring a login or account creation.  You may end up with some comment spam, but the rewards in real comments will offset the inconvenience of dealing with the spam.

There is a new plugin pulling in the blog feeds. We no longer have post content being displayed. You’ll just see links for the most recent posts. The older posts will still be kept, since some blogs no longer exist.

Thanks,
Beth

Latest Posts

Dancing in the rain

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“Learning that life isn’t about waiting for the storm to pass, it’s about dancing in the rain.”

That sentence is the byline of my blog. I have to admit that it’s been a lie in the most literal respect, as I have never liked the rain and wouldn’t normally choose to walk in it, let alone dance. However, life is strange and sometimes brings you experiences you didn’t know you might need or want…

Before I elaborate, as an annual update… I passed my eight year stem cell transplant anniversary in May and remain in remission and in mostly good health. By the way, my lovely humble donor (see my previous post) is now pregnant and awaiting the birth of another life in late July. I’m secretly hoping it might coincide with my own birthday, because I like patterns and connections.

Anyway, due to my permanently compromised immune system, I have been keeping myself at home since early March, before the official pandemic lockdown in England. Despite living next to a beautiful nature reserve – the reason I bought a house here – it has been difficult to take regular walks there, because the paths are narrow and many people weren’t even attempting to maintain two metres distance from me. There were also a lot more people around than usual. This often meant I had to get off the path into the bushes and sometimes stay there for several minutes, while a stream of pedestrians and cyclists passed by, not seeming to give much attention to the need for distance; often not even acknowledging me waiting for them to pass.

It made the whole experience highly anxious, when the act of walking was supposed to be for both my physical and mental well-being. I began to feel that I couldn’t safely go out. At one point, I considered getting flashing lights or a sign to let people know that I am at higher risk than most. I haven’t entirely abandoned this idea; in fact it’s an art work in progress. 

After one very sunny Sunday, when the whole world seemed to be out in the nature reserve, involving a string of encounters with thoughtless, rude people, even being told I was a stupid woman and should walk somewhere else; and culminating in being practically run off the path by a large group of men on bikes being obnoxious and shouting that it was all a hoax when challenged, I stopped walking there if there was any chance of large numbers of people. In effect, this meant not going at the weekend, or even during the week if the weather was warm and sunny.

Instead, even now, when I’m generally feeling less anxious about briefly passing people, but more people are paying even less attention to keeping distance, my preference has turned to walking when it’s grey, cloudy, cool or cold and yes, even when it’s raining. I wear my headphones and listen to a shuffled mix of music, so on any one walk, I might hear songs that make me slow down and contemplate existence; sometimes cry; fierce punky beats that get me stomping along; mixed in with upbeat, happy tunes. I tend to go with the flow and let myself be moved emotionally and physically by whatever comes on. So finally, yes, I have been dancing in the rain… and really appreciating the freedom to do so.

The metaphor of my byline has come into being in a more profound way too, where the rain is not only a passing storm, but a cloak of safety and comfort in these anxious times, rather than grim, depressing dampness, as I would have perceived it in the past. I haven’t even minded getting a bit wet.

By the way, the video above was filmed by me on one of my walks.

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Makin’ it Monday

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I just passed 1252 posts on my blog.

Of course, I’ve had my blog since 2012 when the great decluttering era started and my journey with minimalism. Right now, it seems minimalism is taking a back seat because my houseplants are taking over. Seriously, I think I need to give some away. Plus with Covid-19 the pantry has exploded into the prepper pantry.  It’s all good though, everything changes. I’m certainly not filling up white space with stuff.

My Flylady routine hasn’t changed all that much since 2012 but some. When I first started with FL, I did all her recommendations. Then as they got done, I wrote out my list of things for each zone and that’s what I use today. Some people find FL too involved or restrictive, but I think the form is valuable if you own it for your own circumstances. If you are drowning in clutter and not getting the house in order, start with the kitchen sink as she recommends.  Keeping the kitchen sink clean and clutter-free of dishes really sets the tone for the whole house as odd as that sounds.

Our very hot weather continues and so does the constant watering the yard. We are getting some cherry tomatoes and cucumbers and zucchini which is nice. As a matter of fact, I’m planning on making a zucchini bread this morning.

Last night I made the individual quiches and they were good. I used the  Breville toaster oven and it kept the kitchen cooler than using the oven. I think they could have been cooked a little less.

Today is my basic Monday chores which are dusting, vacuuming, mop kitchen floor, and a general tidy up.

We had the logger guy come and pick up the huge logs on Saturday. What a relief they are gone. He charged $150 which was completely worth it to get them out of the back area. Barclay could have never cut them up.

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Simple Sunday

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BOYCOTT GOYA FOOD PRODUCTS!

( just a reminder)….

We stocked up the prepper pantry this week with

  • 25 lbs of black beans. they’re not organic but grown in Washington state so I felt ok about it.
  • canned goods
  • coffee( 2 bags of Starbucks French Roast on sale at Costco)
  • Bob’s steel cut oats
  • TP
  • paper towels ( Costco’s giant package gets us through most of the year) We try not to use a lot of paper towels but sometimes you just have to.
  • Dove soap( 16 bars)
  • ramen soup( my favorite breakfast)
  • lots of single item things from Winco like Asian seasoning stuff, and olives
  • four more boxes of pasta
  • Another 10 bag of Calrose rice

The barn pantry looks really good and as soon as I get the Ikea pantry the other stainless steel shelves will go out there too.

Not much on the schedule this week, so that’s nice. With the weather being so hot, I don’t like having to go out much.

I went to Goodwill yesterday and Whoaaaaa… I got there at 9:45am. Dropoffs start at 10am. there were probably 25 cars already in line. By the time it started, I had probably 30 cars behind me. I guess it’s the season.

My order from Ikea ( from 2 months ago) showed up. So it’s another bamboo plant stand. And another small cabinet. I have this cabinet in our entryway and my plan was to put this one next to it. But then since we put the small TV in my office area, I decided I will put it under the TV and put ALL the DVDs in it. If they don’t fit some will have to go. So a little more organization.

I’ve been taking some pictures of the different rooms again and looking at the spaces. In my office area, the brown rug ( once I took the picture) looked really awful with the grey Ikea couch. So that was pulled out and I’ll have to see if I want a grey rug to replace or just leave the wood floor. Some of the pine boards need replacing so another project.

This week on the menu will be

  • individual Lodge quiches, a mushroom /cheese, spinach/ cheese)
  • Yakisoba with crispy tofu
  • burrito bowls with pintos, avocado, tomato salsa, cheese and tortillas
  • maybe something with beef like in a Japanese recipe from Just One Cookbook
  • spinach crepes with a bechamel sauce( maybe) depends how ambitious I feel!

BTW, I am loving the Zojirushi rice maker I got. It is fantastic ( thanks Laura from The Occasional Nomads who always has great suggestions and has lovely Japanese things in her home on Kaua’i.

My head is spinning with the political crap going on. With Trump getting Stone off the hook and out of his scheduled sentence, I just want to throw up. The corruption is so blatant it’s mind-boggling. Then he and Devos ( who is also evil incarnate) just wants the kids to go to school 5 days a week. Ok, you send YOUR kid or you go and spend a week in a classroom with 30 kids and tell me it’s safe. Yeah, right.

In other boring news, the Flylady zone is the bathroom. Not exciting but hey it still needs to get done.

 

And so it begins…

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Over a year since I relapsed and we’re now on route to my transplant.

Today I started on my G-CSF injections. These are used to stimulate my stem cells and I have to take three, every evening for 4 days. I actually don’t mind the injections as I’m lucky enough not to have a fear of needles. I’m not sure about the rest. Like with childbirth, I have parked my previous experiences 10 years ago, well in my internal being. Somewhere not to be revisited unless I read back on my blog (hmmm, why did I decide that was a good idea?!?!)

So, there is a chance of some side effects…bone pain and flu like symptoms the most common….the rest too scary (and hopefully too unlikely to even bother mentioning!!). So I took the first ones tonight and then followed them with a couple of G&T’s….didn’t read whether alcohol was recommended with them …. oops!

So, off to bed now and hoping for a decent nights sleep. I haven’t been sleeping well recently. Lots of dreams. Possibly anxiety related although I don’t feel particularly anxious. Might succumb to another sleeping tablet to help though. Why fight it.

Damn, what a pain!

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So the whole post didn’t publish so here’s a recap. Really pisses me off because now I have to rewrite it all.

To start,  I was saying, BOYCOTT GOYA FOODS.

Their CEO, owner, a Latino man and this is a Latino based business, had a publicity stunt with Trump and basically kissed his ass. Praising him as such a great person. This is the same person who has devalued, denigrated, locked up Hispanic children in cages, called them rapists and murderers. But he’s now some saint. BOYCOTT GOYA!

The tree pictures.

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All I can say, after having just said it all is $3600 later it’s done.

Recaps:

B’s IVIG went fine.

 

Shopping at Costco, Winco, Trader Joe’s went fine. Expensive but fine.

It’s hot here in Northern California.

That’s it for now.

Summer Daze

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Sunflower

Cancer requires one to slow down and simplify their life. Predictability in ongoing routines helps me to manage an otherwise unpredictable disease. Finding peace in a time of uncertainty is the goal. 

Once a month, I receive a dose of immunoglobulins. It’s a support treatment. It doesn’t kill cancer cells. Instead, it boosts my immune system, which is depleted of defenders by my blood cancer, multiple myeloma. The immunoglobulins help to protect me against bacterial and viral infections. Things like the common cold; things like Covid-19.

Due to my “sucky” immune system, I also practice preventive measures to minimize unduly exposing myself to random bugs. I was social distancing before it became a meme. I learned from nurses at the time of my stem cell transplant in 2008 that an emphasis on personal hygiene would prolong my life. It’s simple, common sense behavior. For 12 years, I’ve avoided salad bars, chosen not to fly, and washed my hands … a lot.

Bachelor Buttons, Cosmos, and Japanese Poppy

My health is decent, managed by a series of treatments that have not changed in some time. The plan is busy but not arduous: I take oral drugs at home and have two monthly visits to the infusatorium. One is for a dose of the aforementioned IGG cells. I receive a cancer killer drug at the other visit. After that, I get a few weeks break before doing it all over again.

In order to combat the disease, my oncologist designed a coherent plan. It’s based on science. If necessary, we adapt when the cancer develops wrinkles that need smoothing. 

These days, much of the rest of my life is similar to everyone else’s. That’s assuming they are following the prevention methodologies of social distancing, personal hygiene, and mask wearing. With the coronavirus we all have immune systems jeopardized by an infectious disease. 

Finding peace in my wildflowers.

Unfortunately, many people refuse to adhere to practical preventive measures. Why is it that there is blatant disregard for common sense? It starts with leadership. Our president refuses to model safe behavior.

In fact, he stumbles to be relevant in multiple crises. Obviously, he missed his chance to lead. Mayors and governors act decisively. They govern. The president, however, fails to articulate a clear message. He muddies the water with “gut” assessments of biology. And, his repeated contention that fewer tests will lead to fewer cases, murders logic. 

The misinformation, in conjunction with a lack of direction, lead to an increase in the infection rate. More deaths follow. The economy flounders as millions of Americans cannot work. All this for want of a national plan to control the pandemic. 

It’s hard to find peace under this cloud of uncertainty. Things must change. Leadership must be found. Be sure to vote this November. Your life may depend on it.

Just soooooooo Beat Up :(( … UPDATED 7.11.20!

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7.10.20

Hello Friends,

So much to share…
Pain is off the chart
MRI results: Holes, Tumors, Mass, Lesions
Skull, spine, neck, collarbone
Crazy painful swollen awful tumor bump protruding on L side collarbone clavicle driving me nuts- wanna see a picture of it?

Radiation coming next week forward
Myeloma is eating my bones, like Termites to wood
Finally gave in and tried Norco; not even making a dent in the pain lol!

Took Labs Thurs July 9
May have results to share
I think it will be GOODBYE Elotuzumab Emplicity, as I think you are the Pain Culprit, and not really doing me any good anyway
Decisions to make re next line of treatment
How about going backwards to good old Revlimid, Velcade, Dexamethasone… skipped that firstline option back in the day
Hate switching to new meds
Hate the unknown side effects out to get me 
Just hate you Myeloma for stealing my life
I’m so beat up, so discouraged in so many ways, scared in ways I haven’t been before
But looking forward to Radiation to put this Humpty Dumpty back together again
I just want to live
Live a calm, peaceful, pain free life
I don’t mind being on chemo for life, so used to it now
Just want freedom of movement and to feel good a few days a week
Is that too much to ask Universe!
I’ll be back with the details, Dr reports, and a bit of reminiscing about my 10 year Stem Cell Transplant anniversary on July 5th! Wow, 10 years ago where I was, what I was doing, and what my body was doing to me… guess as bad as things are now, I sure wouldn’t want to be where I was then, as the Melphalan chemo was totally crashing my system, and wow, was I sickie. Have linked my July blogs below…
Too be continued….
…..

7.11.20 **** UPDATE !!!!!

So my Left side Clavicle, Collar Bone area continues to do me in. I feel so disabled, but still trying to be me, and do something, anything around here. I feel better if I can move around, as sitting or reclining or trying to sleep is even more painful. I’m beginning to wonder if this DRAMA began with the immobilized position I was in for so long for the MRI scans back on June 30. Seems as if it’s a knotted bundle of muscles and nerves wrapped around a tumor, pulling and tweaking EVERYTHING :((( Here’s a lovely picture of it my daughter took the other day. I’ve been trying to carefully stretch, bend, creak, tweak, crack, move on my L side, but this is just so dang painful, and limiting. Amazing how our anatomy and physiology is such an incredible interconnected machine. Which is wonderful when it’s healthy, but so awful when not.
Hilariously, I did try a Norco 5mg/325 on Thursday night, and it literally did NOTHING for me! Didn’t even take the edge of the pain, or give me any woozy, relaxing relief. So who needs that stuff, if I just have to take a larger dose. Plain Tylenol, Advil, muscle relaxer Flexeril AND my BEST FRIEND EVER Dexamethasone Steroids, seem to be the best treatment for me. I just need Anti-inflammatories!!! I don’t have an “addictive personality”, so I was never worried about taking the Norco. All I want is to be pain free, without meds. I don’t “need” anything to boost me up when I feel ok!!! Feeling ok for real, is the BEST feeling Ever!!!

And did I mention, the disabling pain is so awful, I’ve been using my hubby’s remote hospital bed to sleep in, as I can’t get in and out of a normal bed with the intensity of my pain. He hasn’t used it in months, after his weird seizures earlier in the year. He does better sitting up in a chair. We’re a train wreck…

So the main concerns my Drs have is the bone damage in my neck, skull base, skull bones, R side head, etc. Thankfully, my lovely mass is NOT a brain tumor, but a mass, tumor, holes, lesions, etc, in the skull and bones. Areas I have read and reread as I never fully learned detailed Anatomy and Physiology. Just took sooooooooo much for granted, as we all do, when we are Well!!
Here’s a summary report of about 20 pages of MRI, CT, Xray reports. Main areas of concern are the: clivus, foramen magnum, chordoma, You can Google those, as there’s so much info there, my head is spinning. OOpps, shouldn’t use that term, as that’s what will happen when myeloma cracks all those body parts and my head starts spinning on it’s own. I’ve become a “bobble head”!!

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RECENT IMAGING Report
June, July 2020
6/30/2020:
MRI BRAIN: There
is abnormal bone marrow signal within the clivus which enhances heterogeneously
postcontrast. There is also abnormal enhancement within the
right side of the skull base at the foramen magnum.
There is no
intracranial mass or intracranial extension from an enhancing right skull base
tumor involving the clivus.                              
In a patient with
known multiple myeloma, metastatic disease is most  likely etiology…
 Other skull base lesions including a chordoma are not excluded. 
6/30/2020: MRI NECK:
Normal soft tissue
neck MRI pre and postcontrast.
                    
There is bone marrow
replacement within the clivus most consistent with metastatic disease in a patient
with known multiple
myeloma.          
6/30/2020: MRI C
SPINE:

There is age expected cervical spondylosis that causes mild C4-C5 and mild
C5-6  central spinal stenosis. There is abnormal bone marrow signal
replacing the clivus. There is patchy enhancement in the cervical vertebral
bodies consistent with the patient’s known metastatic disease.  



7/5/2020: XR LEFT
CLAVICLE:
The bones are
demineralized. There are 2 well-defined lytic lesions of the clavicle lesion of
the mid clavicular shaft, unchanged from the prior CT scan. There are no
fractures or dislocations. There is mild degenerative change of the AC joint.      
PHYSICAL EXAMINATION:
GENERAL: She appears
well in no acute distress. Speech is fluent and
coherent. Cognition is
normal.
ASSESSMENT: 60 year
old female with progressive myeloma with left clavicular pain and neck pain.
Recent imaging showing clivus, cervical vertebrae and left clavicular
involvement.
RECOMMENDATION: A
lengthy discussion took place with the patient. Offered palliative radiation
therapy to the clivus/c-spine region and the left clavicle areas. The
indications for radiation therapy in this setting were discussed in detail.
Also discussed were the potential risks and side effects of treatment.
Specifically emphasized was the risk of radiation damage to the normal tissue
structures in the treatment field including the skin, underlying bone, throat,
brain and lung. Logistics discussed. She agrees to treatment. She was advised
to call should she have any further questions or concerns.
Department of
Radiation Oncology
* L clavicle pain, tenderness, feels getting
more painful and swollen, protruding large. Has headaches on right lower
head/neck area. Neck pain – clicks and stiff. Dr prescribed Norco today since Tylenol
does not help much.

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Am I really writing about my Life? How can this be? I think back over the 10.7 years of treatment and realize how “lucky” I was in the beginning with not having to deal with Bone Involvement with this stikn Myeloma. I was so Naive and Optimistic, and just didn’t think this awful cancer would attack ME as it has. But ha ha on me, it did, always was getting worse, and now I cannot ignore or laugh off it’s impact on my life. 
I’m still waiting for my IGA results from Thursday. I really don’t have an intuition as to how Bad or Good my status is. I’m just so worried about what treatment to do, as I hate side effects, and there are some I just won’t tolerate. Not sure come Monday, if I will be doing Elotuzumab/Empliciti, or try Velcade again, with the Revlimid and Dex steroids. Can you even comprehend how medications are the “only” thing keeping me alive. And without an effective treatment… yikes… won’t go there now… 
Here’s a look back on my 10 year July 2010 Stem Cell Transplant:
So Crazy how I’ve been writing my Myeloma Life story for this long. And that’s only the July posts! I’m glad I have been loyal to writing, as it’s so helpful to look back on my status, treatments, feelings, life stories, and this will be the “book of life” everyone tells me to write. 
Ok, my Farrier is here to trim the horse hoofs, it’s a million degrees of heat out, and gotta go get all doggies corralled. I will post my IGA when it comes in, and next post will be all about the Radiation plan and hoping to get this pain under control and the muscles and nerves calmed down, so I can live my life! 
Thank you for reading and caring as you do! Stay well, healthy and pain free, as truly “Health is Everything”!!!