Just soooooooo Beat Up :(( … UPDATED 7.11.20!


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. I use the side bar and vertical head lift position to get in and out. 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 crazy train wreck… Ridiculous and unreal!

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”!!


June, July 2020
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
6/30/2020: MRI C

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
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
GENERAL: She appears
well in no acute distress. Speech is fluent and
coherent. Cognition is
old female with progressive myeloma with left clavicular pain and neck pain.
Recent imaging showing clivus, cervical vertebrae and left clavicular
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.


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”!!!