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

Monday, August 7, 2017

Welcome to FatigueVille, but It's all Still Good!

Hello 8.7.17

Being a deep thinker has its advantages and disadvantages. I’m always thinking. Thinking Thinking Thinking. Analyzing Analyzing Analyzing. When I woke up the other morning, I was struck by how “relatively ok” I felt, albeit exhausted, always fatigued, achy, with some neuropathy, but ok. I was truly surprised I felt so ok, as feeling Not ok is my regular, “new normal”, and feeling well or ok, is “abnormal” and surprising. Then it hit me… I really am doing ok on this current triplet cocktail treatment. It’s still working it’s magic and dominating the myeloma cells. I smiled and thought, “I’m alive! Seven and a half years after diagnosis, I’m still alive, and my current treatment is still working! Still working, still surprised... is my new normal.

Many of you may say, “well of course you’re still alive Julie”… but seriously… it is a miracle, considering the aggressiveness of my 7, (almost 8) year myeloma battle and my history of burning through treatments after about a year (or less). My current triplet treatment of Darzalex, Pomalyst, and Dex steroids have been suppressing the power of the myeloma cells for about 5 months now. I marvel at my (still) low IgA numbers and almost non-existent M Protein. I marvel at the power and chemistry of the myeloma meds keeping me alive. I constantly think about the “intelligence” of these medications, altering the chemical properties of me cellularly, fighting this ferocious battle within me. Cells killing cells. Powerful medications giving power to my internal self, in a bio-chemical-physiological way I still cannot comprehend. 


 Although I am currently doing ok (or so I still think, as my monthly status labs will be later this week), I never let my guard down. I live month to month, blood test to blood test, always prepared for the roller coaster shifting in the “wrong” direction. Another “new normal”, rather an “altered normal” way of thinking. Taking nothing for granted, always wondering what’s around the corner. The When, not If, will my status change? It’s kind of like living, while always holding your breath. Living on a precipice, wondering when you'll almost fall of the edge... again.

Do you recall my post from a while ago, where I asked my SCT oncologist a “be honest with me” timeline question? This was at an appointment where my labs told the tale of me not responding well to my previous treatment, and we were discussing my next treatment options. Without sugar-coating my question, I bluntly asked: “So Dr S, what if I decided to take a medication break, or I just decided I couldn’t take all the side effects any more, and stopped treatment… How many “Years” would I have?”, I directly asked. With a pause, and thoughtful caring voice, he looked directly at me and said: “it would be months, not years. Many months, but not many years”…. 

Saaayyy Whaaaat, I processed. He must have heard me wrong. So I restated the question, emphasizing the word “Years”. “How many Years would I have left, without any chemo treatments?” He leaned over very intently, and replied, “Julie, I’m not “God”, and I don’t have a crystal ball, but if you chose to stop all treatments, it wouldn’t be “years”, it would be “months”… "it's the medications keeping you alive"... My myeloma numbers were pretty high at that time, so I understood and absorbed the gravity of what he was saying… 

Yes, I’m a thinker, a what if-er, and a pragmatist. I want the truth, the whole truth, and in my face. I want to assess my options, knowing if I even have options. I’m constantly trying to wrap my head around this situation I’m in, that still feels surreal, and still seems like it can’t be. That I’m really talking about someone else and telling someone else’s story.
Forward march, my march. One day at a time, one week at a time, one month at a time, one blood test at a time, one infusion at a time, one pill at a time. This is my life. For however long my life is, according to myeloma.

Live happy, live well, and make a difference somewhere, somehow, with someone or something as often as you can



  1. I love you Julie, praying for you!! xoxo

    1. Jenna!!! So good to hear from you! If you check back here, email me your update! Or I will email you!!! Thank you so much for all your love and support, and I hope all is well and successful with you, my amazing student!!! xoxo


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.