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Thursday, December 7, 2017

Just The Facts and Stats


Hello December, month of monumental anniversaries...
But for now, I'll keep it short and sweet and share my recent lab results

After a lousy, crazy November, with being sick more than well, I am happy to greet December 2017. Strangely, after battling the vicious viral URI that attacked me, my recent December 3 labs gifted me with relatively good results. So strange, after being so sick, missing my monthly November Darzalex infusion, taking a few days off of Pomalyst, and not taking Dex every week, my labs came back with good news. I will note though, that prior to doing the Dec 3 labs, I had been back on Pomalyst and Dex for a week. I'm super proud of my minimal compromised immune system for rallying, and pummeling the viral bug and myeloma at the same time!

IgA down from last month!

Yep, IgA down a bit!

Not bad, right :))

Whoohoo, no Monoclonal Protein detected!

Yep, "Abnormal", but no M Protein spike

So what have I learned from all of this...
1- I have to absorb the full impact of being a cancer patient, 24/7, every day of the year
2- I should not minimize any of my symptoms, and "accept" the seriousness of my situation
3- I need to take my treatment regimen seriously, and not "cheat" on taking Dex steroids weekly
4- I need to fully accept I am not "normal" anymore, and I never will be again
5- As good as I am with saying "no" to events and people, I need to adhere to my "rules" to stay healthy
6- I need to stop being so "strong" and accept I am battling incurable cancer, forever
7- I need to fully accept that my life prior to myeloma is gone, and accept I have an "aggressive" form of myeloma, that needs to be constantly treated aggressively

Even as I write all that, it's still impossible for me to fully connect with my status. I tell people my story, hear their amazement and concern, but feel as if I am describing someone else's life story. Even as I near my 8 year myeloma diagnosis anniversary, I still feel so detached from all of this. I write my story, tell my story, describe my treatments and side effects, yet it all still feels so "out of body". Intellectually, I know my situation. Psychologically, I just don't "feel" it. As lousy as I feel so much of the time, it's the few "good days" that affirm my disbelief of my cancer status. So weird. 

Yep, I'm pretty worn out battling, fighting, ingesting, injecting, trying to heal, trying to feel well, trying to "get back to normal", an elusive, non existent normal. I'm so tried of challenges. I just want simplicity in my life. Less is More. But myeloma insists on more and more and more...

So just as I'm beginning to feel better the other day, my lower GI surprised me again with after dinner diarrhea. Ok body, fine, clean out the plumbing, but lets not make it an all night event. Maybe it was my after steroids crash? Who knows, I can't keep up with all my symptoms and side effects. But after a while, it gets ridiculous, so I take a swig of Imodium, which works like a charm for me. When I know the coast is clear, I shower and look forward to bed and sleep. But no, no peaceful end of the night for me, as when I went to blow dry my hair, my hairdryer sparked, sputtered, sparked more, and flamed, almost catching my hair on fire. Really?! C'mon life, can I have a break please!

And then the next day, gale force winds hit CA, and our poor state is burning up. I am just overwhelmed with all the devastation affecting people, animals, and the landscape. In comparison, my issues are small. I have a home, insurance, and all my loved ones (human and animal) are safe. So I shut my trap, count my blessings and good fortune, and focus on how lucky I am, as my heart breaks for those who's lives are suddenly, inexplicably destroyed. 

8 years ago December, I was very sick, and had no clue. No clue how close I was to not being here... December 14, 2009 was my first "Hematology/Oncology" appointment... 8 years later, I am still here myeloma! 

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


  1. Hey friend, thanks for the update. I can only imagine how difficult and how life as you know it now gets old. Even in the midst of your honest sharing, there is positivity and light. I'm sorry you have to suffer through all of this. I glad your recent lab numbers looked better. Love you lots. Gay

    1. Awww Gay! Thank you so much for checking in, and continuing to follow my "drama". Whew! What a crazy last month+ I have had! I will message you for your updates, and to plan a visit in Jan 2018. Much love and hugs 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.