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!