So Much Myeloma Everywhere!!!

Hello and Goodbye 11.9.19
Hello 11.10.19

So yesterday I attended my local Myeloma support group, that I have been attending for years… (I’ll have to ask our facilitator how long I’ve actually been going)… Wonderful group, wonderful facilitator/leader Theresa! I have benefited so much from attending this group. Have learned so much from everyone’s stories of treatment, their life with myeloma, and sharing cancer survival skills… The meetings are informative and emotional. Some meetings are Medical/professional speakers, other meetings Members sharing their Myeloma stories. Yesterday we had a large group, with quite a few new members. Newly, recently diagnosed, to one man, WHO HAS SURVIVED AND LIVED WITH MYELOMA FOR 32 YEARS! YES 32 YEARS! That’s not a typo! I still can’t get over it. His story gives all of us such hope!!!

Driving there I was teary and emotional, as I haven’t attended in months due to my husband’s rapid Alzheimer’s decline, and the challenges of both our illnesses, along with the recent CA fires surrounding that area and mine. But on top of those emotions, I was super sad and reflective because my neighbor and special myeloma buddy Gary, (who I attended with for years (along with his wife Pat, and my hubby Jim)… had recently passed away this August… So driving there alone, without any of them, really affected me. Just so much loss on so many levels personally, along with seeing the burnt hills, so close to homes and the Reagan Library, was just so sad on so many levels…

At the meeting, there were so many stories of all kinds of myeloma treatments, successes, failures, hospitalizations, medications, medications, medications, stem cell transplant stories, challenges, challenges, challenges, etc… but what impacted me the most, were the stories of horrific bone issues, compression fractures, bone breakage survival, bone surgeries, Kyphoplasty, etc… I need a lesson in Human Anatomy and Physiology to know what parts everyone was referring to!!! Brought back memories of my status this time last year, with my awful painful plasmacytoma and lesion issues, resulting in Radiation in December 2018… But in comparison, I feel so fortunate with my treatment success and limited pain issues compared to so many… more on this… as my Horse Farrier is here now, to trim the horses hooves… then more “stuff” here to attend too, then off to take weekly blood tests, then, then, then…. see there always so much going here… but in perceptive… I’m so very lucky…

In the meantime…. here’s our Anatomy lesson for the day… as so many bones were mentioned in medical terms, I know not what they are!!!

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I’m back :)) ….

There were so many stories at the meeting regarding how most people were initially diagnosed with myeloma because of severe bone pain, bone issues, bone breaks, bone surgeries, etc, it was mind bending. So many stories of kidney failure too. When I was diagnosed, my presenting symptoms were extreme horrible blood test results (clearly showing myeloma), extreme fatigue (I thought was work/life exhaustion), extreme anemia from bleeding out (which I thought was allergies and “girlie change of life”), breathing issues (which I thought was from being out of shape), and a terribly compromised immune system (which I thought was from being exposed to so many students).

But the stories! OMG :(( One lady, who has been a member for a while like me, and also a horse gal like me, was diagnosed when her neck/spine collapsed. Area C-something in the graph above. She was at her ranch, teaching riding lessons, and doing something in the barn, when cccrrraaaacccckkkk, went her neck… So many stories of extreme bone pain, bone fractures, lesions, on and on and on… So the “pity party” I came to the meeting with, quickly turned to gratefulness of my status.

Whoops, here comes Jim needing help, and our caregiver has left…
I’ll try again to update…

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Thank you loyal blog followers for your concerned messages regarding me not posting on the 9 yesterday…
Just so much going on here, and I never get the private time to write, as I used to… Not enjoying being “boss lady” in charge of “everything”….