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

Tuesday, January 29, 2019

Life in Myelomaville- One Day at a Time, One Treatment at a Time

Hello 1.29.19

No new news to report from my status on 1.19.19
Hoping my stats are even better in February!

I am so thankful this triplet of Velcade, Cytoxan, 40mg Dex steroids is making a dent in overpowering Myeloma... well making a dent to an extent, somewhat, that is. My IGA didn't plummet to normal or anywhere near lol, but it certainly moved in the right direction! Last labs you can see on my previous post show I am still 3x the High End of Normal, but that's sure an improvement on the previous months!

I marvel everyday, every treatment, what my body has been through and able to handle for 9 years. Still this myeloma diagnosis and experience is surreal and an out of body non reality for me. Yet I do what I have to do, daily, weekly, monthly, and so on. "It Is What It Is"... I tell myself all the time. Carry on Julie, you're not in control any longer... On treatment days I get up and take 10, 4mg Dexamethasone Steroids, which = 40mgs! Then a few hours later, I show up for my Velcade shot. A few hours later I take 8 Cytoxan pills at 50mg each for a total of 800mg. Seriously, how can I be doing this? How does my body tolerate it? I would love if there was a little camera I could ingest, that would show the adventures going on inside of me. How incredible would that be! I'd love to see what is happening to me cellularly, chemically, biologically. I'd love to see how the cancer cells grow, and take over. I'd love to see how the chemos ambush and trick the cancer cells, killing them off, or disabling them. I love science, but I'm not smart enough to fully understand all this amazing stuff!

Yes, I keep believing, hoping new myeloma killing meds
continue to be developed... 
saving my life and all my myeloma warriors

10 Dex Steroids + one delish Banana protein shake in the morning.
8 Cytoxan pills + one delish Vanilla protein shake in the late afternoon
I do have nausea later in the night, but not too bad

So far Velcade has Not gifted me with awful Neuropathy!
I avoided Velcade early on, as so many myeloma peers
warned of the awful Neuropathy side effects. 
Cross fingers, it continues to work,
with minor side effects!

And here comes the needle!
Not so bad after all. 
Amazing what we all can get used to!

My life continues to be consumed in health issues for me and my hubby. Seriously unbelievable. I have been working on Acceptance, letting go of what I thought this time in my life was going to be. Neither of our situations are Curable, and sadly the reality is... we will both continue to decline. I honestly don't think about "Cures", as that just sets one up for disappointments. I think in terms of daily Quality of Life, just getting thru each day with minimal "drama", feeling good- as best we can, finding small joys daily, and always hoping my current treatment lasts a long time, and I don't become "Refractory" to my chemos too quickly. 

Fortunately there is a lot of research going on with Myeloma. There are new medications being developed all the time. During the recent American government shut down, I heard it was affecting cancer research, grants, etc. I began to really think of the potential personal impact. Wow, what if my current medications couldn't be produced. What if I suddenly didn't have access to medical care. What if I didn't have access to treatment, in the amazing way I do. What if research and clinical trials were halted. I thought about all the zillions of patients dealing with these issues now and beyond the "shut down". Well, I think about this all the time when I read about patients struggling to be treated, not having access to medical care and life saving medications. I am happy and proud to pay for my insurance, Dr visits, clinical expenses, medication copays, etc. And I know the answer to my above questions, as my stem cell transplant Dr answered those questions few years ago. Remember?

I directly asked him... "What if I decided to stop all treatments? What if I was just tired of all the side effects, my limited Quality of Life from all the chemo meds, and decided to STOP treating"... "HOW MANY YEARS WOULD I HAVE LEFT?" He leaned closer to me and Jim and said... "I'm not God, and I don't have a crystal ball, but Julie... you DON'T have YEARS, you'll have MONTHS"... 

Yes, I think about all this all the time. Myeloma medications are literally saving and prolonging my life. Continual treatment is my life, one day at time, one pill, one injection, one infusion, etc, at a time. I  never wanted anything to "control" me, yet now... so many things do, on so many levels. I'm not in control of my destiny in so many ways... So much for a "carefully planned life"...

But as I always say, I am ever so grateful for all the wonderful things and people in my life. I am one of the lucky ones for sure! It's really incredible what everyone endures on their journey called life. 

Here are some helpful and informative Myeloma links for you:

If you are a myeloma patient, I highly recommend the Myeloma Crowd Facebook support groups. They are an invaluable source of information, support, understanding, sharing and myeloma comradery.

Cheers to February and a new month of new hopes. To all of you enduring the Artic frigid wintry blast, snuggle up, and stay warm.

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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.