Cowgirl Up!!! ... Does Horse Poop Cause Cancer??

Friday, July 10, 2020

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"!!


RECENT IMAGING Report June, July 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.  

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 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.


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"!!! 


  1. oh Julie, I'm so sorry.It's not too much to ask for a pain free and calm life. I'm confident you'll get there. hang in there. I'm sending you hugs and positive, healing energy. Chat soon.

    1. Thank you Matt. I'm being challenged beyond challenged. Hoping you are doing well and "in charge" of your myeloma. I'm doing steroids more often, and that helps a bit. Dex is the only thing that takes the edge off xoxo

  2. Always thinking of you, your challenges and "kick its ass" attitude! You inspire me to avoid complaining, living life abundantly and choosing to be happy. xoxo

    1. Aww Laurie, so very good to hear from you! Thank you for following my story and letting me know you're reading! Thank you for letting me know my writing inspires you. That inspires me to keep writing. Thank you Laurie xoxo

  3. My husband and I are loyal followers Julie so thank you so much for being a loyal writer! I read your posts to my husband to remind him that he is not alone in his Myeloma battle. He too would like to try Revlimid again. Very tolerable drug. Stay strong Julie!! Please know that you are not alone. Love and Prayers to you and your family oxox

    1. Thank you so much Bonnie for letting me know my posts matter and you read them to your husband. Hope it's not too raw or intense. And thank you for reminding me I'm not "alone" in this insane myeloma battle. I "know" it, but so good to hear it from another myeloma family. Thank you for caring as you do. How is your husband doing, and what meds is he on now? xoxo

  4. So sorry to hear. And sobering for what is a possible/probable future for many of us myeloma patients.

    1. Hi Conda, thank you for reading and caring. I used to say your words to myself, when I would read other myeloma patient blogs, posts. I could not imagine feeling, experiencing what I would read, and now I am that read! Hoping your myeloma is under control better. Share your story with me, if you'd like. Thank you for reading and commenting! xoxo

  5. AnonymousJuly 18, 2020

    Julie, this is just awful!!!!! I'm so sorry to hear how much pain you're in. I love you and pray you will get relief. Love, Gay

    1. Hi Gay, thank you so much for checking in and reading. Thank you for your love and prayers. Can you believe what has happened to me! Did we know each other before my diagnosis? If only we could meet up and have some fun and laughs together... soon, we will friend. Thank you for your friendship over all these years Gay xoxo

  6. Julie, Read all your blog posts , your myeloma life sounds so much like mine, I have been fighting this insidious disease since 2015 so exhausting and painful . Drugs seem to be worse than disease , bad side effects that I don't handle to well. I too have a house full of animals that I cannot even care for anymore My fabulous son clean up after them but bothers me cause not fair to him. Hate that my kids have to see me in pain with no energy to even get up off a couch. Your story is an inspiration to me and I hope and pray for any relief you may get. You deserve it. God Bless you and yours. Continue the fight Myeloma will not win this battle.

    1. Thank you for following my blog and commenting. Yes, the drugs, meds, side effects are often worse than the myeloma itself. But we have to push forward and try to kill this monster off. Good to hear you are a 5 year survivor. Which meds have you done so far? And yes, sad we cannot care for our critters as we once did. Amazing how when life works it work, and when we are ill, everything becomes such a chore. Glad you have your son to help. I'm sure your kids feel terrible seeing you ravaged by stupid MM. But we'll fight forward, right, for our kids and animals :)) Thank you for commenting and sharing your story!


My Story... How my MM was diagnosed

October/November/December 2009...

Most of my life I was VERY presumptuous about being healthy, taking my (mostly) GOOD health for granted...
I was committed to annual check-ups for all of us, and so late October 2009, my daughter and I went for our annual and very routine physicals.

Surprise, surprise... my routine blood tests revealed extreme Anemia, significant White and Red Cell issues, low Platelets, and a variety of other CBC red flags! I was (stupidly) not worried when my GP doc left repeated phone messages to contact him, and when we did speak, I (stupidly) requested postponement of his referral appointment to the Hematology Dept until the end of the Fall academic term.

Arriving for my first appointment Dec 14, 2009, I was confronted with the check-in sign that read: "Hematology/Oncology"... What? Nooooo! not me... I must be in the WRONG place! And so my diagnosis journey began with vials and vials of blood drawn "stat", urgent Dr consultations, a surprise and painful Bone Marrow Biopsy, a full body Skeletal Scan, more blood tests stat, and then on 12.30.2009... THE revealing meeting... the "huh-what" moment ... the confirmation diagnosis that I, Julie, have CANCER!!!

Happy New Year to me, I just learned a new vocabulary word:
Multiple Myeloma!!! MM, Multiple Mye-what-loma!!!

January - June 2010

My medical metamorphosis began.
I read, and read, and read and researched and researched MM. I trusted my expert Oncology/Hematology team's plan and began my "New Normal" as a cancer patient.
My treatment plan was developed to include powerful Dexemthesone steroids paired with Revlimid chemotherapy, with the plan to be hospitalized for an Autologous Stem Cell Transplant July 2010.

I began living "one day at a time" like never before.
Jim was a wreck. Alissa and Scott were stunned; family and friends shocked.

Me... Cowgirl Up! I got back in the saddle and knew I was in for the ride of my life!
I did well on my initial pill-form Revlimid Chemo, "roid-rage" Dex Steroids and other supportive meds. I am forever deeply grateful and appreciative for all the love and support from everyone in my personal and professional life! I thank all of you for working along with me, and allowing me to continue to lead a semi "normal" life!
YOU have helped save my life!

My treatment trail ride forks to City of Hope hospital as I will saddle up beginning June 9, 2010 for a new rodeo called an Autologous Stem Cell Transplant!
Ye-Ha, let the adventure begin!

Chemical Warfare...

January 2010 - May 2010:
My initial chemo regimen:

Pill form Chemo= Revlimid (10mg, 15mg capsules)
Pill form Dexamethasone Steroids (40 mg, 4 days on, 4 days off!
Omeprazole for steroid acid reflux
Mepron (looks like yellow finger paint) Anti-fungal, Anti-viral, etc for my very compromised immune system
.81 Aspirin to prevent DVT, Revlimid complications
Allopurinol- keeping the kidneys healthy
Acyclovir- anti-Shingles, anti-viral

June 2010:
High dose IV Cytoxan chemo
Neupogen to build up stem cells for Apheresis, stem cell harvest, which was very successful, as City of Hope was able to collect 9.5 million of my own stem cells

July 2010 Hospitalization:
Two days of high dose Melphalan chemo
Then July 5, 2010 = my Autologous Stem Cell transplant infusion!

And you can read my whole story from that point forward in this blog!

What is multiple myeloma?

What is multiple myeloma?

Cancer starts when cells in the body begin to grow out of control. Cells in nearly any part of the body can become cancer, and can spread to other areas of the body. To learn more about how cancers start and spread, see What Is Cancer?

Multiple myeloma is a cancer formed by malignant plasma cells. Normal plasma cells are found in the bone marrow and are an important part of the immune system.

The immune system is made up of several types of cells that work together to fight infections and other diseases. Lymphocytes (lymph cells) are the main cell type of the immune system. The major types of lymphocytes are T cells and B cells.

When B cells respond to an infection, they mature and change into plasma cells. Plasma cells make the antibodies (also called immunoglobulins) that help the body attack and kill germs. Lymphocytes are in many areas of the body, such as lymph nodes, the bone marrow, the intestines, and the bloodstream. Plasma cells, however, are mainly found in the bone marrow. Bone marrow is the soft tissue inside some hollow bones. In addition to plasma cells, normal bone marrow has cells that make the different normal blood cells.

When plasma cells become cancerous and grow out of control, they can produce a tumor called a plasmacytoma. These tumors generally develop in a bone, but they are also rarely found in other tissues. If someone has only a single plasma cell tumor, the disease is called an isolated (or solitary) plasmacytoma. If someone has more than one plasmacytoma, they have multiple myeloma.

Multiple myeloma is characterized by several features, including:

Low blood counts

In multiple myeloma, the overgrowth of plasma cells in the bone marrow can crowd out normal blood-forming cells, leading to low blood counts. This can cause anemia – a shortage of red blood cells. People with anemia become pale, weak, and fatigued. Multiple myeloma can also cause the level of platelets in the blood to become low (called thrombocytopenia). This can lead to increased bleeding and bruising. Another condition that can develop is leukopenia – a shortage of normal white blood cells. This can lead to problems fighting infections.

Bone and calcium problems

Myeloma cells also interfere with cells that help keep the bones strong. Bones are constantly being remade to keep them strong. Two major kinds of bone cells normally work together to keep bones healthy and strong. The cells that lay down new bone are called osteoblasts. The cells that break down old bone are called osteoclasts. Myeloma cells make a substance that tells the osteoclasts to speed up dissolving the bone. Since the osteoblasts do not get a signal to put down new bone, old bone is broken down without new bone to replace it. This makes the bones weak and they break easily. Fractured bones are a major problem in people with myeloma. This increase in bone break-down can also raise calcium levels in the blood. (Problems caused by high calcium levels are discussed in the section “How is multiple myeloma diagnosed?”)


Abnormal plasma cells do not protect the body from infections. As mentioned before, normal plasma cells produce antibodies that attack germs. For example, if you developed pneumonia, normal plasma cells would produce antibodies aimed at the specific bacteria that were causing the illness. These antibodies help the body attack and kill the bacteria. In multiple myeloma, the myeloma cells crowd out the normal plasma cells, so that antibodies to fight the infection can’t be made. The antibody made by the myeloma cells does not help fight infections. That’s because the myeloma cells are just many copies of the same plasma cell – all making copies of the same exact (or monoclonal) antibody.

Kidney problems

The antibody made by myeloma cells can harm the kidneys. This can lead to kidney damage and even kidney failure.