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

Monday, July 20, 2020

My Stolen Life...


Hello Friends,

My physical PAIN suffering is off the charts. This bone, muscle, nerve, tumor, lesion, mass, myeloma cancer pain is doing me in. I can't even convey the level of pain, and how I hurt, and how simple everyday, ordinary tasks hurt so much to even attempt to do. I ache so much. I cry too often now. I cry from physical pain. I cry because I am so very very sad about what has happened to me that I have no control over. Myeloma is in control. Myeloma is eating me up like Termites to Wood. I've never been a "crier" as I never let things build up inside. Nothing wrong with crying. Clears the soul in many ways, but not this time. Even crying hurts. Hurts physically. Serves no purpose for me. Sobbing last night, I stop, and say, "just Shut Up Julie, just Shut the F up Julie, no one hears you, no one can help you, just Shut Up Julie, crying servers no purpose and just tenses your body even more, just shut up Julie"... I grimace, I deep breathe as I try to get into bed... I hurt so much... I stop crying and eventually fall asleep for a few hours...

It hurts to brush my teeth, to lift my arms, to move my head, to bend my arms, hands, neck, etc. It hurts me everywhere my upper body moves. It hurts on both sides of my collar bone and shoulders and arms, up my neck and in to my head. Everything I want, need to do is stolen from me. I want to do chores, clean my house, do laundry, shower, change my clothes, do animal chores, lift food to my mouth, open medication containers, water the plants, fly spray the horses, clean the corral, do inside animal chores, do anything I used to do so easily. Reaching to wash my hands aches so much. I feel the nerves, muscles, tightening, tearing, hurting so much with this simple, so needed task. I do it anyway. My eyes tear in pain. My heart skips a beat in physical pain and mental recognition of my situation. I just want to do simple things in my life. I can't drive right now. I am dependent on others. I hate that. My wonderful adult kids have been driving me to Dr appts and lab tests. I hate being dependent. I hate needing, asking for help. I was always the Helper, not the Needer.

Little controlled me before Myeloma... now myeloma controls every aspect of my life, my being, my days, my nights. I cry from pain. I cry from feeling so out of control. I cry from feeling desperate for relief. I cry because I just hurt so much. I cry because I force myself to do things. It hurts to do anything I used to do so easily, so presumptuously. I cry because I am so limited with pain. Typing this painful. Everything I attempt to do creates excruciating pain. My life is stolen. The ability to do simple tasks has been taken away from me. I don't understand what happened to me. I don't understand my suffering. I don't understand why I am being so tortured. Yes, why me? Why life? Why, I cry out.... I "ugly cry sob". This is not how I imagined this time of my life.... I cry out how I "hate my life"... I correct myself... I don't hate my life, I hate what my life has done to me, what my body has done to me, what myeloma has done to me, what cancer has done to me... why? why me? I am so sad...

I'm not imagining this. Bone pain is Excruciating!

Think about all the things you do. Little, big. routine, required, fun. Things we all take for granted, and assume we can always do. Think about how each and every one of those is now a huge painful challenge for me. Simple things, huge pain. Huge ridiculous, painful challenges. My stolen life...

I must take a break here. Typing and using the mouse hurts so much. But I have a story and pictures to share with you of my first Radiation consult from last Thursday July 16... here's a hint...

Yep, that's me in there!
I'll be back in a few hours, promise, as this story has a super funny twist :)) 

!!!! Updated below :))

And I just got notification of lousy IGA upward moving stats :((
720 points up in just 10 days without chemo...

Grrrrr!@#$%%+*** !!!!


So this last Thursday, my son drove me downtown for my Radiation planning consult appt. With all this stikn pain, I can't drive myself anywhere, as I don't have the ability to move fast, turn, react, etc. Not doing LA freeways in my condition. 

I wasn't sure what they were going to "do" with me, thought this was just a verbal "planning" appt. Turns out, I needed another CT scan for the awful Clavicle, collarbone, shoulder pain. Makes sense, just didn't know it would be done. When the Rad Tech explained what the Plan was, I was... oooohhh nooo, I can't possibly lie down flat on the CT table for a scan. The pain would launch me to never never land, and I probably couldn't get down or up from the narrow table. Well obvi Julie, if you can't do the scan, they can't move forward, so I convinced myself to absorb more torture and agreed. 

I remembered I had a little pill container with Tylenol in it, in my purse. So I CHEWED 2 "generic 325" Tylenols. Scott's laughing that I just chewed them, but that's what I do regularly now, and have for a long time, as 1- it takes affect faster, and 2- I just don't swallow pills well anymore, as I have to swallow so many, and I sometimes just can't swallow them without my standby protein shake drinks (like Ensure) ... After I chewed the 2 little white pills, something made me look back in the bottle and check what they were. OMG there was one left, and it DIDN'T say 325!!! It said 512... Google that friends...

From Google: "People ask...
OMG, what the F did I just do. I'm laughing, scared and laughing. Scott's incredulous of what I have done, and says, Wow Mom, you'll be feeling pain free in no time"... ahahahaaa
I asked the Tech and Nurse for water, and explained to them and the Dr what I just done, and they laughed too, and weren't worried, even though I explained I'd never taken these before, and that they must have been my husband's RX from a while ago, for Spinal Stenosis and his venous ulcers from his blood clot destroyed leg... 

OMG, I turn myself into a science project all the time. Just couldn't believe what I had done, and really the only worry I had, was if I had a GI reaction... can you imagine becoming GI sick, while restrained on the CT table. OMG, Julie... the drama never lessens. 

So I went with the Rad Techs to the CT room, not feeling anything different at all, got onto the narrow, sliding table with their help, and waited for a reaction. And I waited. And I waited. And I waited. LOL nothing. Nothing from Norco a week or so ago. Now Nothing from what I found out was Percocet. Nothing. No high, no low, no extra relief. Probably the only relief I got was from the little bit of Tylenol mixed with the Oxy. So I made it through the scan, and also through the forming and fitting of the personalized head protector, mesh head stabilizer mask with no drama, no issues, with no notable fun druggie relief feelings. Nothing, no extra pain relief at all. How crazy is that. Nothing lol. Nothing. 

All this confirmed again, my magic formula for nerve, muscle, bone pain is DEXAMETHASONE STEROIDS, with plain and simple Acetaminophen Tylenol and Flexeril muscle relaxant. And those really don't do much either. Just takes the "edge" off. Would have to take double dose of Flexeril to probably really feel relief. But I won't do that to my body....

Guess this cowgirl has a pretty high pain tolerance and pretty high resistance to drugs lol.  

So I go back this coming Friday for the final mapping and maybe my first Radiation treatment. Bring it on, can't wait. Let's git er done! Zap these outta control myeloma cells causing me so much pain and grief! 

The things I'm able to do.
Thank you Dex steroids and Tylenol

Pretty cool how they make the mask.
Wasn't expecting that at all. 
It's a soft plastic mold, that is mold-able, pliable in the beginning, to shape.
As the Techs put it on me, they told me it would warm, steamy and damp.
And gooie. 
Felt kinda like making a dental mold and having a facial at the same time.
I'm ready for Halloween now!
And I get to keep this party favor when all my radiation treatments are over. 

I still can't believe this story is my story

And we have a new rescue doggie
She's the black one. 
She's from Arkansas.
Only one missing in this picture is our
brown Lab

The craziness never stops here, but it sure keeps me going!

Yes, every day is an adventure here. Horrible and Wonderful at once. How was I able to post this today? DEX STEROIDS from this morning, thank you very much my fave friend. My arm is killing me still, my neck is cramped, the clavicle tumor bumps against things when I move, and my muscles and nerves burn and pull and hurt, but less than last night, or yesterday, etc. 

Dr consult tomorrow and I will insist on being back on some sort of chemo. I feel very uncomfortable letting the myeloma grow outta control while waiting for the Radiation to be completed. Chemo is systemic and kills the myeloma throughout the whole body. Radiation is targeted to the specific areas of my current pain, tumors, mass, lesions, holes, etc. 

Earlier the Pain management Pharmacist called and we talked about my pain med options. She was incredibly helpful and encouraging. When the Dex steroids wear off, I will try the Norco again. Or not, not sure. We'll see. I'll let you know. 

Thank you for reading and caring and following my crazy almost 11 year myeloma story. Hope you are doing better than me, and doing ok in these crazy Virus times. 


  1. Hi, I have been reading your post and so sorry for the pain you are suffering you are a very strong woman and I hope this passes for you. My husband was diagnosed last August and he has been in pain for the entire year. We have not done the radiation I sure hope this works for you and I will be reading. You are correct this disease is horrible I really hope you WIN!

    1. Hello new friend, thank you for commenting and letting me know you are reading and following my story :)) I am sorry for your husband's diagnosis and the pain he is experiencing. I did not have pain for many many years, so please make sure his Drs do all kinds of scans to pinpoint where his pain is, and what is causing it. Myeloma is so complex and affects so many areas of our bodies.
      If you'd like, please tell me his story of symptoms and diagnosis and treatments he's on. I've been on most all myeloma meds, and had have had pretty good results over the last 10+ years. We can beat this monster. Stay strong and give your husband my best wishes for feeling ok, and getting better. Thank you for checking in and your kind, supportive comments, Julie :))

    2. Thank you Julie for your kindness and trying to help. This disease is unbelievable in what it does to the human body. I sure hope the radiation works for your pain you really have a great outlook and strength and I hope this continues for you.

      My husbands diagnosis is unreal to me still to this day. One Friday my husband came home complaining of back pain we went to emergency on Sunday and they did a CT scan said he had mild compression in his lower back sent him home with motrin and a week off work. I have had neck problems so I knew we needed a MRI so our mission began to get an MRI. Fast forward to August 15 2019 my husband using a walker now at age 57 to get MRI results we were told it was Multiple Myeloma the doctor gave him percocet and sent him home to wait for the oncologist to call. Never hearing about this type of cancer I briefly looked it up but was too busy that day dealing with his pain and work obligations we watched TV and went to bed. The next morning I could wake him but he didn't stay awake this I assumed was his reaction to percocet around 2:00pm I called my son to try and get him to get my husband out of bed at this time my husband knew who I was and was speaking. Sometime about 4:00pm he did not recognize me or my son I called 911. My husband was acting like a standup comedian and I had no clue his kidney function was only 9% he of course was admitted and became non responsive for 5 days would not wake up his kidneys came down to 3% function within 24 hours they began plasmapheresis and dialysis he woke up about 3:00am 5 days later and it was a MIRACLE he does not remember anything. We stayed for 2 weeks and he was released and started chemo they did not know anything about this type of cancer and they told us they were consulting City of Hope I eventually transferred his care to City of Hope they continued with the regimen of CyBorD reduced strength due to renal failure this plateau within 6 months. He began RVD with lenalidomide again reduced strength this lasted 2 months is numbers kept going higher, he is now on Daratumumab Pomalyst and Dex steroid all reduced strength. My husband has had pain since July 2019 sometimes at a level of 9 or 10 on pain meds (methadone and dilaudid. He has IgG Lambda his numbers have always been off the charts but has come down in the last few months enough that they have offered Stem Cell my husband has not decided as of yet not sure if the outcome is worth the risk due to renal failure his kidney function has not come back.

      I ran across your blog looking for someone similar to my husbands but never found one. I read your blog as you write with positivity and this helps. Thank you again for listening to my story any input is greatly appreciated.

    3. ps by the way my name is Pattie

    4. Oh wow Pattie, that is quite a story, and so scary for you and your family. Your husband and I have been thru similar treatments, but he has blown thru these faster than me, as I am creeping up on my 11 year anniversary and he was Dx in 2019! My heart goes out to you both. wow! Yes, myeloma is so scary and shocking when we are first Dx!
      I am IGA Lambda and did my SCT at City of Hope July 2010. I am happy to answer any questions you have about treatments, SCT, etc. You can email me at
      I also have a male myeloma buddy who had serious Kidney issues like your husband, and he is in So Cal also. Here's his blog-


    6. I feel bad complaining about my awful pain, as it sounds like your hubby has been even more pain challenged than me! Are his current pain meds working for him? Gosh, everyone's story is so crazy and scary! Can't imagine the scare his situation brought all of you! How is he feeling now? Hang in there Pattie, and thank you so much for sharing his/your story, and let me know if you want me to contact Matt, or I will let him know you may leave a comment on his blog.

  2. Hi Julie, I am sad to read about your worsening pain. I wish there was something I could do to help. You're strong and resilient and will get through this. Our lives certainly aren't what we expected. It's maddening and heartbreaking. I'm sending you hugs and healing energy. Matt

    1. Hi Matt, thank you so much for always reading and following my crazy story, and being so supportive and caring. I did so ok for so long, but I am sure being pummeled now. I'm so happy your treatments have been so successful and sustained for as long as they have been. It's amazing when we find an effective chemo combo and it continues to overpower myeloma. I was too smug for too long, and now I'm being "paid back" lol. We're warrior buddies forever Matt xoxo Julie


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.