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

Tuesday, October 20, 2020

Low Labs, New Blood, New Challenges, Radiation, Myeloma Just Loves Me


Hello Friends and loyal readers. 

I certainly do not have a "boring" life. Myeloma just keeps on, keeping on, relentlessly. Is this really my life? I still can't digest and accept what goes on with me on a daily basis, even though I am 11 years into this crazy ride. 

My heart is so sad, my mind is processing 24 7, Jim's loss to all of us. But he is at rest and at peace now. Going through his medical decline with him became a window to my future in many ways. Experiencing his Alzheimer's decline, his mind and body decline, his journey from an extremely independent, extraordinarily competent man in all ways, to being trapped in a body that betrayed him, was on several levels, a telescope into my future. We will not leave the earth in the "same way", but experiences and lessons learned daily from his journey, solidified so many things for me, regarding how Myeloma can, will and Will Not take me down. Simply put, if you still have your "mind", no matter how "sick" your body becomes, you still have "choices". Choices eventually were completely stolen from Jim, and I became his "mind". Yet even close to his passing, there were still expressions of preferences, but not with the ability to control the outcome. I am so glad we were here as a family for him, helping to guide his way, and lovingly "read" his needs, and fully be there for him on every level. No doubt, it's very very hard, and very very challenging for all caregivers involved. But frustrations aside, it's a huge, incredible responsibility to "fully" care, mentally and physically, for another adult who cannot care for themself. It's really a huge responsibility, especially when done with love and care. Myeloma, you won't take me out this way... you hear me Myeloma... oh no you won't...

Jim with his beloved ranch chore assistants,
Doing what they loved most, side by side, everyday...

Now that we are half way through October, I continually reflect back on how much was going on with me personally, all the while caring for Jim (with of course wonderful help from our adult kids and professional caregivers). Fortunately in 2019, the combination of Velcade, Cytoxan, Dex steroids allowed me to function relatively well, so I could be there for Jim, the animals, our life etc. But when things changed in late May, June, July, August 2020, due to my horrendous reaction to Elotuzumab, I just can't believe everything I pushed myself to do, even though I was so so "sick" and in pain beyond pain. Honestly, when I couldn't get rid of the fever, had a difficult time catching my breath, and my collarbone, shoulder, neck, head pain was so awful, and my CBC labs continued to decline, while the myeloma labs continued to climb, I really thought I would "go" before Jim. Fortunately weekly high dose Dex steroids, and my formula of Tylenol, Flexeril, low dose steroids and an inhaler, "saved my life". If I listed all the things I continued to do most days, you just wouldn't believe it. I can't, looking back... Elotuzumab, for whatever reason, you totally sabotaged my body, myeloma loved you, and grew tumors, awakened lesions and fractures, and created or awakened "masses" that were dormant, or not as big. I just can't get over what happened to me during that time... 

So here's what's going on now:

I began Kyprolis last week, as we determined Velcade had run it's course and could no longer beat up myeloma, beating me up. But wait, not only did I begin Kyprolis, my Dr determined I needed a blood transfusion, as my Red CBCs were "dangerously low". so 2 bags needed! What??!! I didn't even need blood during my stem cell transplant in 2010, just one bag of Platelets. Well, this news "scared" me, that I was so "bad", but also because the unknown source and "cleanliness" of the donated blood was very worrisome to me. Don't get me wrong, I deeply appreciate the Donors, but I still fear any new treatment going into my body. But I pushed my fears aside, and trusted the screening process and my medical "advisors", and allowed someone's healthy blood in to assist my sick blood. My Dr and Nurse did tell me about an alternative injection,  Epotin (Procrit, Epogen)  , but when I read the side effects, and "possible risk of tumor progression" in blood cancers... I came to my senses and accepted the donor blood. Well only one bag, because of course complicating this double infusion day, was our "last visit" with Jim at the mortuary, for the final ID and loving good-byes... (but that's another story)... and I just didn't have time for 2 bags that day. Fortunately, I did ok on the 2 day Kyprolis infusion, and other than a large bruise, hematoma where the blood transfusion was, no side effects, thank goodness, to either. 

Hello donor blood-
Thank you donors for saving our lives!

Wow, medical science always amazes me,
and what a body can tolerate, is mind boggling!

In my veins, and making me stronger temporarily. 

Blood, then Kyprolis
amazing what the body can handle!

So all that was last week Mon and Tues. Did labs on Sunday, and sadly my Red CBCs weren't all that different. Yes I should have done the 2 bags, but with the timing of Jim's last viewing, I just didn't have time for the 2nd bag, plus I wanted to see how I did before accepting 2 bags of donor blood. 

Also showing from my Sunday labs, my White CBCs (WBC) were so low at 1.4, that I received an early morning call yesterday from my chemo pharmacist, that they were CANCELING my Kyprolis infusions for Monday and Tuesday, and he and my Dr want me to do 3 days of Zarxio (Neupogen) again, to bring up my WBC. Here we go again. body sabotage again. Most likely the myeloma eating me up, and enjoying my new blood, and maybe the Revlimid yanking down my WBC. I remember it did that years ago, when I was on Revlimid for years. Hello again to an even more compromised immune system. Hello bubble life forever. Thank goodness I have a beautiful little ranch to quarantine in, as I've done forever... Corona/Covid, you got nothin on me. Used to this crazy life of cooties out to get me. 

Hello Zarxio injections to bring up my super low WBC
Self injection to my belly-jelly, no problem. 
Expert here now lol

And so it goes for me, on and on and on go the challenges. Thank you Dex steroids for giving me a lift once a week. And thank goodness the awful, horrible pain I experienced in the summer, has lessened to the point, that I have actually gone days or so without any Tylenol or muscle relaxants! Whoohoo, I think the remnants of Elotuzumab is finally getting out of my system. 

And finally... Radiation begins this Saturday for 2 weeks. Hopefully this detailed zapping of both clavicles, specifically the Left side collarbone tumor now bumping into my throat will shrink, as well as shrinking, killing the lung "mass", as well as welding back together the Right side clavicle, collarbone fracture, as well as the Right side rib fracture(s), and other assorted areas I can't wrap my head around! Seriously, can you believe all this. Oh, and lest I forget, a full body Pet Scan later on Saturday too. Have to remember to fast for the glucose contrast injection. I think I'll just go horseback riding and forget all of this. How's that sound ;)) Ooopps, can't forget to do labs on Wednesday to see how the Zarxio has (hopefully) increased my WBC enough, so I can resume Kyprolis on Thursday and Friday. 

So that's just a tiny portion of my life. The medical side that is. If I gave you a run down of all the tasks and events I have to keep up... it would make your head spin, like mine always is. Can't forget to order hay for the horses, feed the almost hibernating tortoise, then worms and clean water for the inside turtle, feed all the doggies, and kitty care, birdie care, clean the house, laundry, don't forget to eat and take my chemo and related pills, and it's tax bill time too, and process everything related to Jim, make sure to keep supplies ordered for our household, hydrate, eat, swiffer, vacuum, water the plants not on sprinklers, have the horse vet over for our senior horses with issues, paperwork, paperwork, paperwork, etc etc etc... calls and more calls, texts, emails, business stuff, etc etc, and that's just a tiny representation... Normal stuff for a "normal" person, but with all my tumor and fracture limitations, plus constant fatigue from chemo and myeloma, each task is a challenge right now. And to think how much Jim did when he was well and I was working. We were an amazing team...

We all have a complicated story, challenges and life demands. We all have our mountains to climb, and I never forget all the beauty and good things to be grateful for daily... One foot in front of the other, I always tell myself. As long as everyone has food, water, love, and health care, it will be ok. And yes, I do have wonderful help from my adult kids, and others. But ultimately, it all circles back to me, to be in charge of it all, while I can. 

Thank you for checking in, caring as you do, and following my story... tell me yours too!

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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.