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

Monday, August 10, 2020

Seriously Myeloma, What Other Suprizes Do You Have Planned for Me!


Hi Friends and loyal readers-

I almost wasn't going to post today, as my suffering has been OFF THE CHART for weeks, months. You know when your Nurse or Dr asks you your level of pain from 1-10 scale... well I tell them mine is near 1000!!! No joke. The suffering I have done since I tried Emplicity Elotuzumab, is insane!!! Well not to bash that chemo in any way, as I'm sure it's been a lifesaver for many, but just as I had an insane reaction to Zometa in 2018, whatever Emplicity does chemically, biologically, Wowzzaaa ooowwwzzzaaa, it sure did me in!!!!

So to recap...

Sadly, Cytoxan (400mg of pills weekly) with Velcade shots with Dex steroids (40mg weekly) stopped being effective for me in May 2020. So that's when my Dr wanted to try Elotuzumab Emplicity with Revlimid and Dex. I was not thrilled with changing, but agreed as my IGA was creeping into the mid 2000's. 

Within a few weeks I noticed muscle, nerve aches and pains, but wrote it off to the new med changes in general, thought it would disappear as my body got used to it, and just suffered thru it. I remember shortly after beginning Elotuz, my Left thumb joint area suddenly swelling big, and becoming very very painful. Thought maybe I did something to it with all the ranch chores. Thought it was odd as the pain began to move and migrate up my Left arm, then into my L shoulder area, then into my collarbone, growing a HUGE tumor on my L clavicle and chest area instantly!!!!! When the size and pain was so crazy intense, never subsiding, that's when I told my Dr about it, commencing all the xray, MRI scans, as I've written about in previous posts. 

Well... the rest is history, with all the unrelenting pain, pain medication adventures, etc. Then a week of Radiation, last week of July. Then recently... surprising low grade 24 7 fevers, with more intense pain on my Right side, then more xray scans, and finally today, first Velcade shot of going backwards (my choice, my request) in this new treatment regimen.

So since my last post, I developed a low grade fever. non stop, 24 7 for days and days and days and days, etc. Vacillated from 99 - 100.4  Can't tell you how absolutely AWFUL it's been. Fevers on top of excruciating pain... "Just Kill Me Now" I would sometimes say... but then quickly take my words back, as I'm not quite ready to let Myeloma win. But there were many desperate days and nights, I just didn't think I could take it anymore, and I still can't. Only reason I can post and type right now, is thanks to 40mg, (ten pills) of Dexamethasone Steriods this morning!!! Haven't had a Tylenol since this morning. Just typing hurts. I just can't get over how bone tumors and myeloma lesion pain, along with fevers, is just the most awful thing to live with...

So my new chemo regimen is the ole myeloma first line of treatment of Revlimid, Velcade, Dex. I skipped this regimen in 2010 as good ole Dex steroids and Revlimid alone brought my IGA down in a flash, prior to my SCT, and then I did lowest dose Rev maintenance for 18 months, and then resumed Revlimid again when out of Remission in 2013.

So we'll see how this goes, but honestly, even if my numbers stay the same, or even escalate a bit, or roller coaster, I'm NOT SWITCHING CHEMOS AGAIN ANYTIME SOON. THIS PAIN HAS DONE ME IN!!!

Oh, you probably want to know about the fevers? Yes they came on fast, but low after Radiation, rose from 99ish to 100ish daily. Yes good ole Tylenol brought it down, but I know that's just a band-aid on some sort of bigger issue. What the fever is, I don't know. Never went to Urgent Care about it,... you know why??? Because I didn't want chemo cancelled. If I don't do chemo, I die. Very simple concept for me. Yes I know I should have been checked. Yes I know it could be an underlying issue (infection?) that could be as serious as not doing chemo. Yes I know not treating is not always the smartest thing, but I watch and wait very very carefully, and if it had continued to rise to 101 let's say, I would have consulted. But again why? I won't go to a hospital because, #1 I don't want to die there, #2 my family wouldn't be allowed to visit me, #3 and what really can they do for me there, that can't be done at home??? 

I ask Jim's home health care nurses about the difference between Pallative and Hospice care. I could be eligible for both. Don't want to go there yet. But honestly friends these last few months have really really tested me. I haven't been able to be me, or function at all. Everything, and I mean everything became a super painful choice. Even with medication. Everything was just torture. I got so I couldn't change my T shirts, couldn't shower as I couldn't lift or turn my arms. Sleeping was was never refreshing. The pain woke me up, I couldn't sleep in any other position but semi upright, with many pillows propping me up. Not fun. If I turned by mistake, yikes the searing pain startled me awake, not to mention, fearing fracturing my clavicle collarbone or ribs more. 

I didn't go outside, as nothing was fun anymore, as everything caused me pain. Yes, I tried Norco, Percocet, different muscle relaxers, steroids, different strengths of Tylenol.  And now I have more clarity as to why i have all this PAIN!!.... I found out from my xray scan yesterday... I HAVE MORE FRKN FRACTURES IN MY RIGHT SIDE CLAVICLE COLLARBONE SHOULDER!, in addition to the LEFT SIDE I JUST HAD RADIATED, ALONG WITH MYELOMA LESIONS EVERYWHERE THEY XRAY. YEP, ALL THIS PAIN IS REAL, and that's why I've been in so much PAIN. Get this description of my fracture type! Unreal!

What would cause a Comminuted Fracture? ...A Comminuted fracture is characterized by the breaking of a bone into several small pieces and is the result of high velocity injuries, such as car accidents, falls from a height, or high-energy injuries with tissue loss caused by fragments from explosive devices on the battlefields.

Fractures of several types, Comminuted fracture, lesions, holes, masses, demineralized bones, clivus eaten up, etc etc. It's no wonder I haven't had more pain over the years with myeloma eating me up like termites to wood!!! Just Google some of the specific wording in the reports. Blew me away!

"A comminuted fracture is a break or splinter of the bone into more than two fragments. Since considerable force and energy is required to fragment bone, fractures of this degree occur after high-impact trauma such as in vehicular accidents."


Paravertebral extension usually occurs with aggressive, malignant lesions, but it may also be encountered in benign lesions in the presence of a pathologic fracture. Certain expansile lesions tend to occur in a specific region of the vertebral column. This may be an important clue to the diagnosis. 


Hello Lytic Lesions, you've been Radiated already!!! 

Ok Friends, I'll just leave it here... my myeloma journey just keeps getting more interesting and challenging daily... just can't make this stuff up. You Myeloma can just stop now, and give me my life back. I don't ask for much. Just pain free, with the ability to just move around slowly, and do what I want when I want, without feeling like a zombie all the time, because I hurt so much, and feel feverish and sick all the time. Oh how I took my early years with Myeloma too smugly.. how Myeloma was raging in the background, but the chemos I was on suppressed everything better than it does now.  Well it was eating me up, but for some reason, the pain from all the lesions just wasn't as intense until Zometa in 2018 and now Elotuzumab, May, June 2019... but I will fight until I can't...


May your summer be full of fresh air, warm summer nights, with the moon and stars shinning brightly on you, surrounded by those you love and care about.


  1. So sorry! I had peumonia fevers for weeks and I couldn't handle just that alone--- nor the conitinous coughing! But there was no pain.( I am 5yrs IGG high risk)

    1. Ugh Conda, that must have been awful. Hopefully that's behind you, and you're better now. Congrats on your 5 years! How did they define you as "high risk"? I remember my Dr telling me that at Dx too. Hope you are doing ok now xoxo

  2. This is Jewell. I haven't commented in a while but have been reading your blog. I am so sorry to hear about all your pain. My heart hurts for you. I am going on 5 years now and I really hope that I am not seeing my future. I am trying not to take for granted my life now. I am on Dara and dex. It is keeping my kappa light chains down. I sincerely hope that your pain gets better and that the fevers go away.

    1. Thank you Jewell for checking in and commenting. Congrats on your 5 years! Funny how I would read blogs and say the same thing, of "hoping I am not seeing my future". I used to think I didn't have bone issues. Ha Ha! I used to to be so smug about things, as I treated well in the beginning. But going on 11 years now, myeloma is really trying to win, but I'm feeling better now, and ready to fight more :)) Glad Darza is working well for you, I had a good run with it too xoxo

  3. Julie, even though I may not comment often, please know that I look every day to see if you have a new post. And my heart breaks for all that you are going through. I cannot imagine the pain. It is a reminder that, for some, myeloma is particularly cruel. Always thinking of you...

    1. Thank you Sheri, for following and commenting and caring as you do. I can't believe all I am going thru either, and agree, it has become very "cruel". I was so smug before, when I treated well, with few side effects. But one day at a time for me, and we'll see what Sept brings. Thank you for caring as you do! xoxo

  4. Dear Julie, I am so sorry you are enduring such pain. When you talk about the difference between palliative and hospice care and not wanting to "go there yet", it might be good to discuss palliative care with your medical team. Palliative care doesn't mean you are at the end; it simply focuses on relieving and preventing the suffering of patients and improving quality of life at any point in the course of a patient's disease. You can still undergo active treatment, but palliative caare specialists are skilled in managing pain since it can be complicated. I do hope you find some relief. Please know that I am thinking of you. Hugs, Aurelie

    1. Hi Aurelie, yes I did ask about Palliative Care, and for Kaiser, only patients who can no longer leave their homes, are eligible. Maybe I heard wrong, but thankfully I have turned the corner, and the fevers are "gone" and the pain is lessening. I did find what works for me to lessen the pain, and I've learned to self treat and not wait for Dr help... July and Aug was just a mess. Hoping Sept will be kinder. Hope you are doing well, and thank you for reading and checking in xoxo

  5. Hi Julie,
    Boy, things sound really rough for you right now. I at least hope you are getting help around the ranch. I hope as well, that things have improved in the last week. I don't tolerate pain well, so not sure what I'd be doing. My numbers are going up ( kappa) so treatment (again) is in the near future but now yet. Sending hugs your way. hang in there.

    1. Thanks for checking in Christina. Sorry your numbers are going up, but thankfully slowly. Yes pain is debilitating, along with all the other side effects, but hopefully Sept will be better as I think I have finally turned the corner. I read your blog too, and marvel at you do! xoxo

  6. Hi Julie,
    Lots going on right now, huh? Hope things improve soon and that you have the support you need to push on. You have lots of love in your life; reason enough to keep going. Sending warm cyberhugs and best wishes for you to feel better soon, Bernadette

    1. Thank you Bernadette for reading and checking in. Yes as awful as things are for both me and my husband, we are very blessed and lucky to have our adult kids so loyal and helpful and well as all the other others that care for us. We were so independent before, it's really hard to accept where we are now, but one day at a time, is all I can do :)) Hope you are well, and doing ok xoxo

  7. Julie,I am so sorry for you and Jim!I will continue to pray for you both.I sure hope the pain will let up soon!
    You are such an inspiration to everybody including me.
    Thank you

    1. Thank you Ron for continuing to follow my blog and for your positive comments. Just one day at a time is all I can do, as my life has become so unpredictable and so unbelievable. Just don't understand how both me and Jim were sentenced with such awful diseases. Stay well and have fun with your family.


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.