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

Tuesday, November 10, 2020

Challenges Challenges, Radiation Radiation, Chemo Chemo, Pain, Limitations... Hate you Myeloma!


Hello Friends, 

So much going on, and I will try to make this short LOL, as my details are so detailed, and you're probably tired of hearing of all my pain and suffering commentary...

My whole life is Myeloma, chemo lab treatments, radiation treatments, side effects, side effects, side effects, home pain treatments, me treating my symptoms 24 7, not feeling well all day long, most all days feeling "sick" all the time, trying not injure myself more than I already am, forcing myself to eat and drink, living in the bathroom with lovely diarrhea many times during the day, then "tortured" when looking out my windows, feeling so sad the life Jim and I created, I am missing out on, that I should Not be missing out on... And the FATIGUE, omg, the FATIGUE... takes my breath away...

We all know the quotes and memes about us not being our cancer diagnosis, cancer not being us, not letting it be our identity, not letting cancer take over our lives, etc. Yes, for many, this all may be true and possible, but it's not for me and most myeloma patients. In my beginning, no one really understood the INCURRABLE, TERMINAL diagnosis status of myeloma, even though I explained it all the time, and wrote about it all the time. I was also "judged" on how I "looked so good", and how I continued to try and work a few hours a week, and on my good days, tried to engage in life. Early on myeloma was eating me up from the inside out, and we really didn't know the extent of it, even though I did have scans, xrays, skeletal scans, etc., and I did have "weird physical, body feelings" I tried to suppress and ignore. I did Not have continual pain, only intermitant, so I didn't have the "typical" myeloma red flags. I was very careful with what I did, took few physical chances, always very clean and sanitary waaaaaay before Corona Covid, so I didn't have a lot of dramatic Dr appts, etc... Myeloma was very silently eating me up, and I just didn't know it...

But over the years, pain began to dominate my non-steroid days. Any little cough, sneeze, bend, fall, lifting, awkward position of leaning over, etc, tweeked something terribly. At first I just got mad at myeself for doing too much, and for still trying to live my pre-myeloma life. Then I realized, accepted how my body was weakening, and sabotaging me more each day. I never could, and still can't, really differentiate or tell the difference between muscle, nerve, bone pain. But it was Zometa (2018) and Elotuzumab (2020) that for whatever reason, super stimulated the horrific pain, crazy side effects and severe bone damage, tumors, masses, etc. (I've mentioned this so many times, so I won't go on and here about it again). But the extent of RAPID tumor and mass growth, sudden fractures, etc, has really brought the reality of this cruel disease to the forefront of my life. Myeloma is me, and I am Myeloma. I can't pretend I am ok, and live a pretend, "normal" life... I can't be the positivity memes that I am Not Cancer, and Cancer is Not me... we are One, and I cannot deny it. Ouch, just did a little cough, and I probably cracked another rib! Oh well, more Radiation tomorrow and the rest of the week.

But I just don't understand how myeloma can bring me down so fast now. I was so treatment responsive, and rather "healthy" with successful treatments, even as recent as earlier this year. Being the deep thinker I am, I'm always incredulous of my situation. How could this once super strong gal, be so incredibly sick now. How could my biochemistry sabotage me as it did, does! Since I didn't have a lot of  the typical alarming bone breaks and bone pain, and I still had a "functional" life a few days a week, how could I be so sick on the inside! I was so fortunate over the years, that the treatments I did eventually WORKED, to bring my numbers down, at least for many months, often for over a year, if I was "lucky". My Drs treated me with the most up to date immunotherapies, and chemo regimens, etc. I had access to any med, any treatment regimens out there. Sure I had yucky side effects 4 to 5 days of the week, but I had a few good days each week too. Now, sadly, little helps. Hardly a good day ever. I hurt all the time. Chemo, immunotherapy is not working. I have too many tumors, lesions, masses, etc, that "there's too much to radiate now", my kind Radiology Oncologist says. Myeloma is angry and more powerful., which of course makes sense, 11 years later (prob even more years, with smoldering MM 2009 prior!) So hard to wrap my head around all this, but pain and fatigue is the ultimate reminder 24 7... 

Sorry for the rant, now to the facts...

Take daily 40mg Dex steroids for a total of 160mg per week now. Feels good in the beginning, then the yucky crash comes on. Didn't have the yucky during initial treatment Jan 2010 - June 2010.

Began Radiation for my R side clavicle, collarbone fractures, R side rib fractures, and for the R side Lung mass today for the entire week. 

Continued the 40mg Dex steroids (4 days on, 4 days off) also. Hoping pummeling myeloma with 160mg roids per week, for several weeks will help, like it did back in 2010. My Dr is concerned doing this amount, but seriously, in my current status Why Not!

Pain is less than the EXTREME, debilitating pain I had in June, July, Aug, Sept, etc. but always there. I cannot believe everything I continued to do and accomplish back then, while suffering so much. The "universe" let me be there for Jim...

Pain is slowly lessening with steroids and radiation, but I am so much smarter now about how I take pain meds, Flexeril muscle relaxant, steroids, etc. I am also much smarter about not trying to "force" myself to do household, ranch chores when I really shouldn't be bending, lifting, twisting, moving, etc... My amazing adult kids and friends come daily to help with things, and I am learning to just let things go, well, to an extent, but really not that much. Jim and I were always such "do-ers"... so hard to not "do"...

Hurts when I breathe
Hurts when I move
Hurts when I turn
Hurts when I use most every part of my dysfunctional body
Hurts just being me, and who I used to be
So wish I could do ranch chores like I did before
Sadly all the past "fun" animal interactions, are just challenging chores now
Hurts when I adjust sitting, trying to relax, trying to sleep
I feel the crazy L side clavicle, collarbone tumor "clunking" always, even though it was radiated for a week. Pokes into my neck, so crazy
My front and back neck hurts, could that be from radiation or more bone damage
Hurts when I spend time (lots of time) on the toilet with diarrhea several times a day
So much sitting I never did before
Food is a challenge, not much tastes good anymore, and I always have GI issues, hello Imodium
Sick of hydrating, always thirsty
So tired of water
Gag reflex more prominent now
Have to remember to take little baby sips
Body is trying to shut down, but I won't let it
Steroids help me so much, in so many ways
Yes, the crash is awful, but the hours I get relief before the crash is worth it

My CBC lab results are not good
Liver function a little higher each time
WBC always low
RBC always low now
RDW always high now
Platelets low
ANC low

Radiation- all this week for my R side collarbone, ribs, lung mass
Kyprolis IV immunotherapy chemo- Mon and Tues 
Continue High dose steroids- 40mg, 4 days on, 4 days off, for a total of 1600 weekly
Covid test prior to Biopsy
Biopsy- R side Liver-Kidney mass Friday Nov 20
Bone Marrow Biopsy- to stage Myeloma, and see if another cancer has joined the party...

Yes, myeloma, you have stolen my life. I am you, and you are me. Many can deny this, but I cannot. My whole life and daily activities are centered around dealing with myeloma, trying not to hurt more, or suffer more, or have GI emergencies. Ugh, the GI emergencies, so scary, yet so funny. Most everything I do, is "forced". Yes I always find joy in all that surrounds me. I do have so much that is wonderful surrounding me. I am very fortunate to have all the loving people and animals who want and need me still alive. Yes I am still incredibly grateful for all that I can still experience in light of all the pain, treatments and side effects. Every night, when I take the little doggies out, I look to the Universe, and ask, cry "WHY, why me"? 

I am "owned" by you Myeloma, and I cannot deny it... and I will never understand or know the "why"... until....


  1. My heart breaks for you, Julie. I am hoping that the doctors come up with something to help you, at least, live with less pain. I hope you are not alone too much and that you accept as much help from others as they are willing to give. You are such a bright light, Julie, please keep shining!

    1. Hi Ellen, thank you for your kind comments of support and always checking in. Hope you and your family are doing well with all the craziness in the world now! I'm doing the super high dose steroids 40mg daily for 4days on, so yes that helps me a lot. Pumps me up, then drops me down bad lol, but sure helps with the pain and mobility and energy on good days :)) Will writing about this soon. Thank you for appreciating my posts xoxo

  2. HI Julie, sorry to hear about the stage of your MM! I too was dx'd with MM in December 2009. I dropped comments here a couple of times over the past decade but you seemed to be in REALLY DEEP DENIAL at those times. I see that with this post, in particular, you've begun to accept the reality of your to the "why" of it all...who the fuck knows? I certainly don't! If you would like to chat privately somewhere, e.g., email or at then I would be happy to oblige....just let me know at, Hang in there the best you can!

    1. Hi, your comment gave me a good laugh of honesty and reality! Thank you for much for letting me know you've read my blog thru out the years and see where my head has been, and is going. Quite the ride, this crazy MM is. And wow, we are both 2009!! I will email you for your details, as 11 years for us is quite remarkable, no matter the journey and strugges right! Love the comment in CAPS and your honest who the FKKKK knows :))) I vasilate between denial, oh wow, acceptance, oh fkkk, why, how, and oh boy, this cancer is real. As a counselor all my life, it really wasn't actual DENIAL, it was just being INCREDULOUS that cancer could happen to me, and especially on good days, and months with good treatment, and low MM numbers, and reading other's journeys, I could get away with the "I'll be ok" mindset... anyway I will email you and thank you so much for commenting, checking in, and your raw comment that sure gave me a good laugh :))

  3. Julie, I've followed your journey since the beginning of my own treatment for myeloma in early 2018. I found your blog while Googling our mutual enemy.

    I'm moved and inspired by your bravery and persistent diligence to share your journey with the rest of us.

    I know it's rough right for you right now but keep up the good fight and we'll beat the crap out of "m" together in 2021!

    1. Hi Byron, and Happy almost 2021! Thank you so much for finding my blog and leaving a comment :)) And Thank you for your kind words of support and encouragement. 11 years is a long time to fight this nasty cancer, but better "here" than "there" right?! Would love to hear your journey and story too, if you'd like to share here, or if you have treatment suggestions you would like to leave on my most recent post 12.30,2020, would love your input.
      Or you can email me at
      I wish you the very best with your treatment, and hope you "beat the crap out of "M", as you say :))
      Thank you for your comment Byron! :))


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.