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Sunday, January 28, 2018

Married to Myeloma... How I Survive

Hello 1.28.18

Can you believe it's the end of January 2018 already! We all remember our parents saying "how time flies" the older we get. No truer words were spoken. Minutes blend to hours, hours to days, days to weeks, weeks to months, months to years... and here I am 8 years later, still so fascinated that I am here. I apologize if you are rolling your eyes over my continual reflections of my survival, but the longer I "last", the more surprised and awed I am that "I am". How can I not be surprised.

I am fascinated with myeloma and what it has done to me and all the other warriors I know, meet, and read about. I am stunned the infinite mutations myeloma makes. How differently it affects all of us. There are so many survivors, with double digit longevity now. Social media has connected us, and I am so intrigued by everyone's different story of diagnosis, treatment, medication combinations, lifestyles, stamina, and the physiological impact of myeloma, as it morphs in such a cruel variety of ways for so many. All my life I have been an analyzer and information seeker. This has only heightened and expanded since my Dec 2009 myeloma diagnosis.

So what's up with me this January 28, 2018, beyond contemplating my cancer status 24 7...
I am finally well.
Well from the horrendous head colds and flu that attacked me in Nov, Dec, early Jan. I am so grateful to be here, and in the "relatively good" health, I am. As I get further away from those awful weeks of fever, muscular aches and pains as a result of coughing so continually and deeply, when I thought I would never have a "normal body" back again, I am focused on what 2018 will bring.

If you are a myeloma patient, or someone that deals with a chronic, incurable medical situation in your life, then you know, life is not predictable, and never will be again. We never know what the day or night will bring. We never know what painful tweak might happen at any moment, due to the nature of myeloma in the blood plasma, in the bone marrow. We never know, day to day, treatment to treatment, how myeloma will morph and evolve, changing our life in an instant. Yes, I think about this all the time. I truly live "one day at a time" now, as I am a realist by nature. I know I am not in control of "where" this journey is taking me. I am only in control of how I react to what comes my way. And unfortunately, it consumes my thoughts. But how can it not...

Life is rarely what "we want it to be", or turns out to be what we "expect", as our life is not entirely in our control. But our decisions and reactions to what happens, are. Our body's biology and chemistry, and our diagnosis "owns" us physiologically. Now I know many of you will object to me saying that and living this way, but honestly, how can a chronic incurable illness not "own" us on so many levels? We cannot "return" our diagnosis to the store, like a pair of shoes that don't fit. We cannot pretend it's something it's not. We cannot wish or will it away. Our body has betrayed us, evolved, changed, become damaged, biologically transformed. We are this illness, and this illness is us on so many levels, because of how it affects us physiologically and psychologically. Again, I know many of you will object to this perspective. But for me, because I was so "free", so "healthy" before myeloma, and was able to do, "more or less", whatever I chose to do in my pre-myeloma life, I am more fixated and aware of this, than perhaps someone who battled "issues" prior to their diagnosis.

For me, every day is focused on "how to feel ok" and maintain the "ok" physiologically. When I wake up I assess my status. If I'm somewhat ok, then my goal is to maintain feeling ok, hopefully "good", for the day. I'm always thinking about how to stay well. How to not get hurt or feel additional pain. How to not exacerbate my circumstances. How not to sabotage what "good" health I have. How to not create or stimulate "bone involvement". How to power my body, "feed my machine", in an attempt to strengthen my fighter cells. I wake up with "chore goals", and hope my limited energy, (thanks to fatigue-stealing myeloma, and myeloma's medication side effects), will "allow" me to accomplish something. Anything. Never gave any of this a thought, pre-myeloma!

I am exhausted and frustrated living this way. So tired of living tired, being tired, being fatigued 24 7. So tired living consumed in trying to avoid so many things, in order to stay alive. So tired of being immune compromised, "living in a bubble", just to survive. I miss the freedom I had pre-myeloma. I miss the spontaneity I had in my life. I miss how carefree I was, how busy I was, how fun and productive my life was. I miss not having to focus on my body's mechanics, and internal workings. I miss not having to worry about the physiological "what if" all the time. I miss the "assumption" my body was a healthy working machine, and would be my partner, not my enemy.

So why do I live like this? Some may think I am "paranoid", overly cautious, too controlled by my illness. Why am I not riding my horses, going walking, hiking, skiing, traveling, playing, meeting up with friends, etc, doing all the physical activities I did prior to myeloma? Why have "I limited my life" as I have?
Well " I " haven't.
Myeloma has limited me, stolen my life, and I must accept it and move forward daily, in the limited way I can. My life is centered around not getting sick, not getting hurt, and trying to enjoy as much of each day, in whatever small way I can. My goal is to feel ok. Simple as that. Just feel ok, and if I'm lucky, feel "good". That is the life of an Immune Compromised Cancer Patient with Myeloma.

I know of so many myeloma patients that "throw caution to the wind" (as my dear mother would say), and just live life, as if myeloma was just a speed bump. They do whatever they want, regardless of the "consequences". Perhaps to them, the fun and pleasure they get, doing the events they do, overrides the potential repercussions... which may include illness, injury, hospitalization, etc. Sorry everyone, for me, it's not worth the chance. So no judgement on others, just my preference for me. The last place I want to go, is the hospital. Especially right now, with this crazy raging flu epidemic!

My son went to Hawaii beginning of January. He really wanted us to join them. We really wanted to go. But no way would I take the chance of cootie contamination at the airport, on the airplane or in the hotel. Especially at this time of year! And the irony. Scott wound up sick with a fever while there! He said there were so many coughing, hacking people on the plane. This week my daughter is off on a cruise. I would love nothing more than to do that. Sounds so relaxing. But No Way! Cruises are floating Petri Dishes of cooties, especially for the immune compromised! We all know of the news stories of ships coming in to port, sick with NoroVirus! Yes, Myeloma has stolen my carefree, take risks lifestyle, but I would rather be cautious, then more sick than I am.

So how do I fill my time? One of things I realized in trying to still work after diagnosis (Dec 2009 - June 2017), was the adaptations I had to make regarding eating, with the potential consequences of food and lower GI side effects from ongoing chemo. Now that I am "retired" (still cannot "relate" too that term), I am able to focus on feeding "my machine" in a healthy way, without worry of side effects, since I am home so much. My goal is to try to get something from each food group in my trap, daily. Such a chore for me, as I am not a "Foodie", and I am very careful about maintaining my weight, and not letting lovely Dexamethasone steroids make me "moon-faced" and pudgy. I'm like a wild horse, I "graze" throughout the day, hoping to arm my "killer cells" with the fighter ammunition, I was probably depleted of previously. I wasn't able to do this while working as a college Counselor, seeing students, in an office, never knowing what food might affect me, and how... I often wonder what "damage" I did to myself, trying too hard to "recover" too soon from my July 2010 Stem Cell Transplant. I was too "desperate" to be "normal", too anxious to claim my professional life back, so I denied the seriousness of myeloma, and went back to work too soon, and for too long...
Back in the day, much prior to my myeloma diagnosis, I had a lot of food allergies, so I was very careful what I ate. Probably too careful, and robbed my body of vital nutrients. I don't think I ate enough Protein back in the day either. When I was diagnosed, I was extremely anemic. Extremely! Funny thing, after my Stem Cell Transplant in July 2010, and subsequent recovery, I realized all my food allergies had disappeared! I could now eat WHATEVER I wanted and suffered no negative side effects as before, such as hives, crazy wheezing, potential anaphylatic reactions, GI disturbances, etc. So funny to me know. I am so much more "healthy" in some ways, but ironically, so "deadly unhealthy" in other ways.

So each day I keep a mental note of what I have done to hydrate, and I attempt to get something from most food groups. I hate living like this, since again, I am not a Foodie, and have moved away from being "momma chef", as my kids have grown up and moved on to their own home. I don't eat meat daily, but do protein in nuts, cheese, cottage cheese, fresh eggs from our own hens. I should do more fish, but I've never been a fan of the taste, and there is so much warning about "farm raised" fish being bad. Our son Scott made steaks for us last weekend, and it was amazing! But again I don't do meat regularly. I still feel bad for all the "factory farmed" animals. Many will object, but I get a lot of my fruits and veggies via juice. Not fresh juicing, but 100% juice, canned, bottled, pasteurized juices such as V8, OJ, combo OJ Pineapple Banana, Cranberry, etc. With all the e coli, salmonella scares regularly, us "immune compromised" patients can't risk the potentially contaminated fresh produce out there, and potential consequences. At least I personally won't take that risk.

I used to eat a lot of fresh salads, fresh fruits and veggies. Scares me now to do that. But I do take the risk occasionally, and hope for the best. Most of what I eat is cooked or steamed. See, with my type of IgA myeloma, and the myeloma medications I am on, my WBC is RARELY above the "Neutropenic" status. I'm lucky to live in the middle 2's. Thus my "paranoia" of food poisoning and cooties overall. So yes, my whole life now is caution, caution, fear, fear. I JUST DON'T WANT TO BE SICK, AND I JUST DON'T WANT TO FEEL BAD! I want to feel well. My daily goal is to feel well.

But the crazy thing lately, even when I was so sick from the headcolds and flu, so many of my blood test results were in the "normal range". All my "organ" labs normal. Most of my CBCs, other than my WBC, were in the normal range. So I must be doing something right :))

I'm very fortunate that several months throughout the year, we have plentiful beautiful lemons, tangerines, tangelos from our trees, and fresh eggs from our sweet hens. At least I know our fresh bounty doesn't have e coli, salmonella cooties! I like to juice the tangerines for fresh tangerine juice! Have you ever tried that. Yummy!! And I make fresh lemon and honey tea, (with the grated rind), daily. I often laugh it would be so easy to be like my horses. Just fresh hay and water sustains those big powerful bodies!

So yes, my life is very different now, but I am so very lucky to have the "quality of life" I do. I count my blessings daily, and take few chances to complicate my status. I just want to feel well, and don't want more "drama"! My next labs are Feb 6, and next Darzalex is Feb 12. So we'll see what all this silliness in my life brings. Thanks for caring about my story and reading my musings. Hoping your life is full of happiness, health, and whatever completes your life.

Thankfully well enough to resume horse chores.
Being outside with my critters makes me happy :))

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, 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.