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Friday, December 14, 2018

9 Years Ago Today- Hema What? Oncol What?

Hello 12.14.18

Wow, crazy... 9 years ago Today I had my First Hematology Oncology appointment. I hadn't heard the word "Myeloma" yet, but judging by the serious looks and conversations on 12.14.09 ... something was up...

And so begins the anniversaries of my 9th year surviving Myeloma. I continue to defy the myeloma odds, surviving 9 years. Yippee!!! I'm alive to "celebrate" this 9 year anniversary of my very first Hematology Oncology appointment! Yes, December 14, 2009 is a date I will never forget.

The medical adventures I have "participated" in between 12.14.2009 and 12.14.2018 are just mind boggling. If I was to, and I really need to, add up alllllllllllllllllllllllllllllllllllllllllll the 9 years of myeloma treatments my lil ol body has endured and survived, I should be shriveled up like a chemically cooked, radiated raisin. How can I still be here with this deadly biological war waging inside of me? Myeloma's been working hard for over 9 years to eat me up alive, and actually quite literally successful at it, as we discovered this year! I am so thankful for all the man made chemicals and radioactive beams available to pummel this monster. Truly amazing what the body can tolerate.

How's this for symbolism?
12.14.2009 I was meeting my original Oncologist Dr Lee (RIP) for the very first time. Today, 12.14.2018 I was at my 5th Radiation appointment. I just love symbolism and the irony.



I really don't remember a lot of the conversation on 12.14.2009. I was actually not feeling great, as I was so "drained" from bleeding out so much the past year, but I wasn't worried or concerned about anything Big or Serious. I was one of those that Never thought a serious medical condition could happen to me! I really believed I was in the "wrong department", thinking I was only there because my blood levels were askew, and some Iron pills, better hydration and perhaps a Steak would take care of whatever issues my Doctors were seeing behind the scenes. Omg, was I naive!!!

From 12.14.2009 forward, I was taking blood tests weekly, maybe even more often, receiving worried calls from my GP and this new Doctor in this mysterious, not really for me, Department of Oncology! The next appointment... 12.18.2009 ... 18th, yes, 18th... more symbolism this year!!! And I will tell you what that was for on my 12.18.18 post! Can you guess??? 

Yes, December 14th is a date that changed my world forever. December 14, 2009 began a journey I never agreed to participate in, and I've been bouncing along the wild medical rapids ever since. As I write this, I still have difficulty accepting and wrapping my head around what I've experienced in the last 9 years since my initial "why am I in this Department" appointment. 

Here I am, on my 50th birthday, November 2009 
just a few weeks prior to that first Oncology appointment

Here I am today, 12.14.2018
at the end of my 5th Radiation appointment

Had a different "office" today as I was supposed to be there yesterday, but with the GI issues on Wed and Thurs, (and continuing tonight...) NO Way would I get on the freeway yesterday! I called and rescheduled for today. And from what I was told, the GI side effects could last for a week or 2. Hello cleansing and Imodium again... 

Nope, I didn't Ring the Bell, as my treatments for Myeloma are ongoing, never ending on so many levels, and from what the Radiology Oncologist has let me know... "I'll Be Baaaaack"... as I have such extensive bone involvement... bone damage, thank you Myeloma, that there are many more areas to zap. I'll post her email summary on my next post, along with the results of my Labs I symbolically took today :)) 

Yep, I'm so very grateful to still be here 9 years later, but still so mystified how this all happened, "why me", and how the heck Myeloma found me.

12.14.2009 you are a date permanently tattooed in my being. You are the beginning of so many unwanted symbolic dates in my life. Symbolic dates that are so unlike my "other life" happy symbolic dates. 

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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.