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

Saturday, August 18, 2018

To Share or Not Share... Your Myeloma Story

Hello 8.18.18
Lots of 8's today, this 8.18.18 in my 8th year with Myeloma.

Recently, I was chatting with other Myeloma pals about our reasons, risks, benefits and the "need" to, or not, share our Myeloma story.

Since I spent my adult life as a college Counselor- analyzing and delving deep into life-- sharing comes natural to me on all levels. But I am highly aware that I am in the minority, not the majority, when it comes to sharing and bearing deep thoughts, feelings, anxieties, stories, events, challenges, etc. Personally, I cannot imagine keeping one's cancer story inside. It's just so HUGE and life changing. As much as we don't want the title of "Cancer Patient", it is us. We can suppress, repress and deny, but once diagnosed, cancer is us, and a huge part of our life. It invades our being. Our body has betrayed us, and we cannot magically undo what has happened cellularly. Especially with an Incurable cancer such as Myeloma, which is a Forever cancer. I've had to accept Myeloma will affect my life Forever, and I have choosen to share my journey, and all the experiences and emotions that go along with it. It helps me, and I hope it helps those that I share with.

No doubt Cancer changes us deeply. The day, the minute of our diagnosis, we are changed... forever and ever. Deeply, profoundly, irrevocably. We are never the same again, no matter what we try to convince ourselves of. A cancer diagnosis changes our life, our view of life forever. It changes every facet of our lives and those in our lives are also forever affected. How we, the cancer "recipient" deals with the diagnosis, treatment and future journey, can determine how everyone in our circle processes it, handles it.

When I was diagnosed, mid morning, early afternoon December 30, 2009, I was in shock, like most everyone would be. I was incredulous, in disbelief, and in denial. I just knew my labs were mixed up with someone else's, or the lab results were in error. It just wasn't possible, that I could have cancer, and INCURABLE cancer at that! I processed it as if I was hearing a diagnosis on a vehicle or other mechanical thing that just needed to be repaired. Take more labs, go get these pills, plan for this, plan for that, come back for this and that. I went into procedure mode. I kept saying cancer cancer cancer cancer cancer over and over and over and over to myself. I tried to have it sink in. It didn't. As I walked the corridors of Kaiser, from Oncology Hematology to the lab, to the cafeteria, I remember suddenly feeling like an entirely different person. I was suddenly not "me" anymore. For one brief moment, I looked into a poster of a forest and cried, this new reality slamming me, that my life, as I knew it, would never ever be the same again, and I wouldn't be able to be or do, what I once did, no matter what I tried to pretend or convince myself of. I had 70% Myeloma cancer coursing through my body, and the fight was on. For my life.

I don't think the depth of the situation hit Jim at that time. He was overwhelmed with the medical information, but heard Cancer, and that was it. He was devastated for me. He went in to "doing mode", keeping busy all the time mode.

Driving home, I think I thought about how to tell our kids, family members, friends, colleagues. I was trying to process what I had been told. I was in shock, but acutely aware of my sudden "new normal". I think foremost on my mind was "how to share" this crazy, awful, unbelievable news. I was suddenly a changed person, not by choice, and needed to share this weirdness. I suddenly felt so different. I felt like a space alien in my own body. I needed to share what had happened to me. Not everyone does. I did, and I do.

To this day, I share. I share my story with everyone, everywhere, anytime. Myeloma is my story. Myeloma has taken over my life. Myeloma changed my life entirely. Changed my lifestyle, my career, my body, my routine, how I  think, eat, sleep, suffer, and occasionally play. Myeloma invaded and changed everything about me and my life, internally and externally. I live with Myeloma every second of the day and night. I cannot avoid Myeloma's symptoms and ravages on my body and life. I am reminded I have incurable cancer every day, most every moment. I am in continuous medical treatment, have continual, on going side effects, have bones that have holes in them from head to feet. I'm always having to avoid cootie contamination, and the possibility of breaking bones. I feel so fragile and vulnerable now. I am an entirely different person than I was prior to diagnosis. If it wasn't for being diagnosed with Myeloma, my life would be radically, incredibly different right now. I can't even imagine what my life would be now... One thing I do know, I would not be writing this blog. You would not know me, and I, you...

From the beginning, I felt I "had" to share my story. I had to tell my family, my friends, my colleagues. How could I not. Nothing about my life was the same since 12/30/2009. How could I "hide" the fact that I was now taking powerful medications 24/7 that caused, causes me crazy physiological and psychological havoc! How could I not tell those around me. I was no longer silly, carefree, "healthy", productive, active Julie. I was now a sickie. Very sick. Everything was different. I had to give an explanation for all the things I "couldn't do" any more. It would be weird if I didn't, with all the things that changed. Forward march I went with explanations, descriptions, and being incredulous that I was talking about me, describing my "new life, my new normal". "What the heck is Myeloma?", everyone asked. "Why is it not curable?", they couldn't understand. "Why do you have to always be in treatment, won't you be in remission or cured, after all the medications?" "How come they can't cure it? like all the other cancers." "Why can't you take this or that and be done with it. How can you look so good and be so sick?" "Wow, you still have hair"... LOL 8 years later... here I am, same status, same questions, different meds, still battling myeloma, same story, different day.

But this is my life, and what works for my life. My choices are not for everyone. I can't pretend I'm not battling a serious enemy every second, of every day.

I feel as if I "need" to tell my story. Partly because I have so many things I cannot do any more, or because I have to be super cautious about so much now. All my compromised immune system precautions could appear quite "odd" to the outsider who knows nothing about me, so I briefly explain my status. I dislike being "high maintenance", but I have to protect myself. My life is different, I am so different, my "needs" are so different. I feel I must explain. And then there's the "external judgement". Because I am not the type to "let myself go", externally, I don't look sick.. But when I am "sick", wow I do look SICK, especially when I have a fever, like all of last July! I am forever explaining how I can "look good" on the outside, but be so sick cellulary, on the inside. Same story for most myeloma patients. There are times I just want to shave my head, so the visual of "CANCER PATIENT" screams out at people when they see me. I am exhausted explaining this aspect of myeloma, almost justifying my status... Some don't understand "why I am still alive", while others don't get "why I am still in treatment"...

I've shared my story with anyone that wants to know. I share for me, for them, for you. I share personally and I've shared my story in professional situations. I've been interviewed about my story quite a few times. I share my story to inform, educate, and to lend empathy, understanding to others. I share my story in the Chemo Lab, when asked. So many patients are incredulous that Myeloma is truly incurable, and that I have been treating for over 8 years. When I tell my story to fellow cancer patients, non-myeloma cancer patients, it hits me what I have been through and for how long. It is incredible to have an incurable cancer, and have been through what I have been through, and continue to go through. Sometimes I'm just so used to being a cancer patient, that I "forget" how crazy and challenging my life is to outsiders. Other times I am acutely aware how so many others are so much "worse off" than I am, and their myeloma is much more visible. But I share me, my life, my story, my struggles and successes, and I want to know yours too.

Sharing my story at Amgen

My eyes look like slits, as it was early in the morning

This quote should have read: 
"I feel more alive than ever"...
lol lol :))

Amgen 2017

Kaiser Cancer Day 2016

And on and on and on...
How lucky am I that others want to hear my crazy story!

Sharing our stories helps others understand what we are going through, and as a result, we enrich their lives, while clarifying ours. For me, being diagnosed with myeloma cancer, so completely changed my life, that I can't separate me and my diagnosis. Some people can, and are adamant that they are "not their diagnosis". I think that's awesome for them, and perhaps they can live their life, and engage in their daily activities without cancer or treatments continually reminding them of their diagnosis and status. For me,... myeloma affects everything I do, and everything I am, because myeloma stole my life as I once knew it... and nothing will ever be the "same" for me again...

The Chemo Lab is my 2nd home
for life, forever,
because myeloma stole my life.
That Is My Reality

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


  1. Very well done. What great insight. Jan

    1. Thank you sweet cowgirl! Crazy how myeloma never stops giving us things to think about. If only our concerns were where to ride, which saddle to pick, and whether to jump the creek, or ride thru it :))) xoxoxo

  2. I LOVE your need to tell your story......
    people who are cancer patients believe there is hope because of you. They know if they battle, there will be successes. Their numbers will change too! People like me are inspired to place one foot in front of the other each day knowing that we can also be successful based upon your stories. You are still a true counselor, but you are now reaching way more people than you ever imagined. I know you have asked... why me? I believe your stories answer your why me question. You have been chosen for the task of telling your story!!!!!! Your calling is to tell us all. Thank you for sharing. We are all grateful. See you soon my fabulous friend! Susan

  3. Thank you Susan for your continual unwavering love and support! Rootbeer Floats asap! I hear they cure cancer and spine issues :))

  4. As you say, we have a lot of similarities. Myeloma has changed our lives hugely. We forget how much as do others around us. Thanks for sharing your story!

    1. Hi Matt, yes... this Myeloma life threw us both such a curve, as of course, with everyone, but we were "forced" into early retirement with everything that came with myeloma and treatments and side effects :((
      I'm headed to your blog now to catch up on your life.
      Thanks so much for checking in Matt :))


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.