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

Thursday, August 2, 2018

Hellooooo August, Good Bye Awful July!


Hello August!
Looking forward to never ever seeing another July like this past one. Cannot believe all the drama I experienced, and I am so glad to have it behind me!

Had my Darzalex infusion on Monday, July 30. Took 40mg Dex steroids prior to, so I always feel ok on infusion days. I "enjoy" the up up up, relief relief relief from the steroids, then the sleepy calm of the Benadryl during the Darza infusion. I never did much medication, not to mention, never doing drugs or alcohol prior to my myeloma diagnosis, so here I am mid life, experiencing these crazy rides from the cancer meds. Of course the medication CRASH days later are no fun, but as long as I don't break any more bones, or have extreme fever and pain beyond pain like I did from the Zometa infusion, I can suffer along with all this insanity. (Yes... the future... I know... more is always coming... Myeloma will continue to mutate and challenge me forever, until, until... but I don't focus on that... One day, One drama, at a time for now..., I just want to feel somewhat ok, if I can, if myeloma let's me... I live in the moment now, I live today...

So just a quick update prior to my usual On The 8's update, as I had such awful news my last few posts. The "good" news is my IGA "only" went up 100 points this month, the Zarxio brought my WBCs up into the super "normal" range, my rib is better, pain and fever from the stikn Zometa is gone, and my Dr and I agreed to going back to Darzalex every other week, to see if that will bring my rising IGA back down.

WOW! look how 3 injections of Zarxio raised my 
WBCs from 2.0 to 8.2!!
WOW, look how Zarxio raised my ANC! 
From .71 last labs, to 5.93 in just 3 injections!

And now on this again.
Was on it in 2010 at the beginning of all my treatments,
due to how immune compromised I always am,
and the high dose steroids.
Looks like yellow preschool finger paint!
"BRAND NAME(s): Mepron. 
"USES: This medication is used to prevent or treat 
Pneumocystis jiroveci pneumonia 
(previously known as Pneumocystis carinii pneumonia or PCP)." 
"It is an antiparasitic that prevents the growth 
of the germ responsible for this infection."

The longer myeloma and I have this crazy relationship, the more I know I just don't want to suffer, and feel awful. I'm just not as "brave" as I used to be. I prefer not to jump from one type of treatment to another (if possible), and I definitely don't like the risk of UNKNOWN NEW SIDE EFFECTS FROM NEW TREATMENTS (altho I know this is ultimately unavoidable).

Everyone is suggesting I get into clinical trials, do another SCT, or go for the CAR T, or change this, change that, get 2nd, 3rd opinions, etc etc etc. 8 years is a long time (at least for me) to be on continuous treatment, so if I can lessen my side effect suffering, I'm all about that. Plus my stats right now just aren't anything to "panic" about. My IGA is "only" 3x the high end of normal, I don't have a M Protein spike, and equally important, my organ status is good! The elusive "remission" is not my goal. Feeling ok, and having myeloma "controlled" is my goal. And of course... QUALITY OF LIFE! Everyone approaches this crazy ride differently, so for me... less is more.

My Drs have never let my roller coaster status get out of control. We treat continually, and when the numbers jump quickly, or seem to not be responding to the current treatment, we switch. My Drs hit my myeloma intense at Dx 2009/2010, then after coming out of SCT "remission" mid/late 2013, then late 2015, then late 2016, early 2017. I'm super happy that Darzalex, Pomalyst, Dex has been working for me since March 2017!!! I'm actually kinda spoiled by it, hence not want to switch, and hoping going back to every other week, will bring me back to where I was this time last year! Yep, as awful as all this is, thankfully my body responds well to treatments... when it doesn't... I'll cross that swaying bridge when I come to it. But in the meantime...

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


  1. Just discovered your blog and writings today... THANK YOU dear one... for your beautiful smile and truthful, honest, and "looking for the good"... I love the dogs and the donkeys in your photos... I love both though I have to drive a little ways to visit donkeys in an old farmer's field to get my donkey 'fix" in person. I was diagnosed last year, 2017. I am a writer, photographer, dog lover... and I googled "I want to do so many things but the pain and fatigue from MM, fractured bones is too great..." something like that... and as I paged forward past page one, two, three of google's items to my search question... I found you. Oh, lucky day! (THANK YOU for your blog... I will be visited often I'm sure. How much I can read depends on how long my back will let me sit... *sigh*). Kiss your dogs for me... and thank you for your beautiful spirit. - a fellow traveler on this crooked road, Suzi

    1. Hi Suzi! What a sweet story that is! I'm so happy you found me :)) And I so appreciate you writing and letting me you did and how you did! Sorry you too have joined the MM club, please let me know what treatments you've had and how you are. I didn't have bone pain or bone issues for years and years until just recently. Not sure if saw my post about my Pet CT Scan? Whew, that's a doozy!!
      So glad you like my horses and doggies. I've had animals all my life, but some days, it's more than I want to deal with. Take care of your back and bones, and again Suzi, thank you so much for reading my posts, and for appreciating my blog! :))

  2. Amazing Julie, This Is Roger from the days of NSA/NS your love for horses,dogs and just plan others is unspeakable. Like u rescuing me from the trash can of life and was there when needed most needed reaching out for direction, this was no correcdence just meant to be. U helped me profoundly change my life with your uplifting words and loving heavenly spirit and 2nd chance to blossom from the inside out.I overcame not only my stuttering,selfishness,pride and became liberated from living a lie and let go of the poisonous belives That were not real. My message is I will see U on the other side and profoundly say I will always love You as a friend and my God sent earth Angel as one of many to give light and direction. Julie feel my special spirit and let it uplifting feel be felt and burn with great healings and being touched by a Angel. I feel grateful We meeting on the trails of this life we’re still living. love Roger ��

    1. Roger Roger! So great to hear from you!! And thank you so very much for your wonderful comment of our journey many many years ago! I am so happy you found, or follow my blog and you commented. I am so glad to hear all our conversations back then had an impact and you were able to all your options beyond the negativity you were experiencing at that time! I sent you and email to your Write to me and let me know how you and your family are. Can you believe our kids are 30 something now! And HI to Laurie too! Thank you so much for your kind comment Roger. Means a lot to me!! :))


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.