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

Monday, March 27, 2017

D is for... too much toDay


And just when we think we can predict...
Ha Ha laughs life...

Got up early, took some Dex steroids, as that's what I have done to begin pre-meding for Tuesday's Darza infusions. I haven't had any relief all week from the ouchy fever-feeling nerve pain. I just feel awful. My thinking: Dex to the rescue! No I haven't been actually "sick", thank goodness! My body just feels sick, like when one has a fever. Ouchy skin. And the fatigue. Ugh the fatigue. I just feel sick all the time now, but I am not sick. Not flu sick. Not stomach flu sick. Not sinus-cold sick. Just tired, fatigued, ouchy fever sick, WITHOUT the fever. Yippee Dex steroids to the rescue.

Got up, took 4 little pills with a Vanilla Ensure, and water, and was going to go back to sleep for an hour. I knew I didn't have much time this morning, as I was due downtown at 11:00 for my SCT Dr appointment.  I just wanted the roids to kick in, and make my achyness disappear. And then it happened. My stomach started rumbling like it hasn't rumbled in a long long time. Hmmm, what's this feeling I mused. Pomalyst, are you becoming my Revlimid? Are we going to have GI adventures again? Will I be prevented from going places due to crazy unpredictable diarrhea? Deja Vu 2013, 2014, 2015? No, all is well, false alarm. I still have a bit of time to "relax" before getting up and leaving.

Oh, yea... surprise, surprise: Hello GI issues again. Hello diarrhea that prevents me from leaving the house, getting on the freeway and getting to my Dr appointment. Ha Ha, laughs life: "You'll never be able to predict much of anything ever again", laughs life at me, while I'm in the bathroom, wondering what the heck. Later, I call my Dr's office and let them know my situation. I'm offered a phone consult appointment, which I was very happy to accept. I really do have the best care!

Dr S and I discussed my labs, new treatments, new meds, new ouchy side effects, etc. We discussed "quality of life" issues. We discussed my options. We discussed Velcade vs Pomalyst with Darzalex, Dex. Who knows which is causing what. Perhaps, with all the side effects, Dr S suggests: "try stretching out Dex AFTER the Darza infusions"... "Maybe not take it day before infusions, but utilize the 40mg dose over more days, since the Dex seems to really help alleviate these new"... awful, painful, debilitating side effects... we discuss back and forth. Done Deal! I'll talk to my chemo lab pharmacists tomorrow and my local Dr.
Dex took it's sweet time kicking in, and still really hasn't given me the "kick" I'm used to, but the awful pain has now subsided. I think Dex will be the Darza side effect minimizer. I was slow to do much of anything today, due to incredible fatigue. I had to "force" myself off the couch and outside to move a bit, and I finally ate a baked potato and then left late for the lab for my blood tests. Everything is an effort lately. Not the Julie I know... This has got to change... I'm not an inside couch lounger.
When I have these lab results I will post them (look for an update April 1). But thankfully, it does look like Darza is effective at wrapping it's self cellularly into and onto myeloma, slamming myeloma's power! I have committed to "suffering", if Darza is my new Elixir. I'll figure out a way to "med up", "drug up", meditate, "ignore it", etc, and make this work. Myeloma, you have ruined my life, but I am forever grateful for this life I have...

Not long after my Dr phone consult, I found out another one of my myeloma friends passed away today. So shocking. I had met Lisa and her husband late last year at the chemo lab. She was somewhat newly diagnosed. June or July 2016, I think. I told them my story and my successes. I gave them hope and tips. She had many complications, had been in and out of the hospital, had to do dialysis, but they were very optimistic and looking forward to getting to and beyond the SCT process. She had many success milestones. She made it to City of Hope for her SCT. Today was 11 days after her SCT infusion. I don't know what happened. But I do know my heart is broken for her family. For her husband and young adult children. So incredibly sad. I just don't understand. I will never understand "Why Bad Things Happen to Good People"... Why Myeloma, Why?

D is for Darzalex side effect surprises
D is for Dex steroids to the rescue
D is for Done Deal, I'll Do it
D is for Deja Vu Diarrhea
D is for Dang, really, here we go again
D is for Dr appointment missed
D is for Dizzy and Ditzy
D is for Dex steroids Bipolar life 
D is for Done with all this insanity
D is for the tragic Death of a myeloma friend toDay

Look for my new lab tests update on April 1. No April's fools joke coming :))

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

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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 capsules)
Pill form Dexamethasone Steroids (40 mg!) paired with Omeprazole
Mepron (looks like yellow finger paint) Anti-fungal, Anti-viral, etc for my very compromised immune system
B-12- to build those cells!
.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.