Because of You Myeloma, This Is Me Now

12.28.18

Wow! Today 12.28.18 marks the last of my on the 8’s posts (but NOT my last post for the year :))

For those that have been loyal followers for years, you know that I have symbolically posted on the days representing my number of years of survival, hence this year on the 8’s, my 8th year of surviving, and living with Myeloma. Yes, my 8th year is rolling over to 9. Hard to wrap my head around this “accomplishment”. 8 going to 9. For me, and all myeloma survivors, each year is such a milestone of so many things “achieved”, survived. In just 4 days, we and all of the world, will be rolling over to 2019! Happy almost New Year to all of you!

Yes, I celebrate my good fortune daily. I celebrate that I am still here, 9 years after my deadly Multiple Myeloma diagnosis 12.30.2009. But deep inside, to tell you the sincerest truth… I am not always “celebrating”. I have such an intense variety of emotions and feelings regarding my “not so new, unwanted, new normal”… but I hesitate how much I should share. I “know” many of you, but as with any public blog tossed out to the universe, I really don’t “know” who all my readers are. Many of you have let me know that you appreciate my thoughts, my honesty, my silly humor, my candor, but how deep, how honest should I be on a public blog… that the entire world can read… is what I question all the time…. Well here goes my end of the 8’s raw, unleashed, unfiltered thoughts… My Life of Opposites:

Beneath all my happiness, I really am quite sad.
Within all my gratefulness, I’m also pissed off.
I am constantly questioning if I am living, or merely existing?
Within all my amazement of my incredible survival, I am exhausted from fighting.
Steroid days have me “high on life”.
Crash days have me questioning “everything”.
Within all my survival “achievements”, my life as I knew it, was stolen.
I love all my animals, and they give me joy and laughs, but their care is now overwhelming.
I love my horses, but they are a constant reminder of what I CANNOT do.
Am I living, or just existing?
Am I prolonging life, or extending death?
Am I extending life, or prolonging death?
I love and appreciate beautiful sunny days, but the earth’s natural beauty is a constant reminder of all the things I am MISSING out on, and can no longer do.
There’s so much I want to do, but I am immobilized by side effects and fatigue.
I love seeing everyone enjoying life, but I’m envious of their health and freedom.
I have a love, hate relationship with food. Without it, I wouldn’t survive.
With it, I am “tortured” by the unknown, surprise, often debilitating GI events.
I’m so very grateful for 9 years of survival, but so beat up from 9 years of fighting.
I am in awe that I am still here, and so are many other people who just don’t “get” the myeloma struggle.
I am grateful for everyday I wake up, but every day is challenge.
I don’t want challenges. I don’t want to grow stronger. Challenges don’t make me stronger, they beat me up.
I am so tried trying to help others understand the precariousness of my situation.
I am so tried explaining, “defending” “why I look so good”, but have a deadly, immune compromising, incurable cancer.
I am perceived as “so strong”. I really am not. And don’t want to be.
I want to crumble, be taken care of, and have everyone understand how sick I really am.
But yet that’s really not me…
I’m strong by nature, my body weak from myeloma.
I live in the moment, what little “living” I do.
I don’t want to plan for the future any more.
Who knows what my future is, and how scary that will be.
I am no longer proactive, but reactive.
I want to laugh
I want to be silly
I want to play
I want to run, ride, hike, play, lounge in the sun.
I want to be carefree.
I want to do what I want to do, without the fear of “breaking”.
Myeloma has eaten my bones
My bones have holes and lesions and tumors
I am fragile physically
I am fragile mentally
I want to feel good
I don’t want to focus on my health and illness, but I can’t avoid it.
I am “forced’ to focus on my body all the time, and I don’t want to. My body is not my friend.
I don’t want to think of what medications to take and when, and what it will do to me.
I don’t want to have to worry about side effects 24 7, 365 days a year, but I don’t have a choice, if I want to continue surviving.
But I am grateful for all the medications keeping me alive.
I am grateful for all the brilliant medical scientists that have discovered all these treatments that are keeping me alive.
I am grateful for all my doctors, nurses, medical staff working with patients like me, to keep us alive.
I am grateful for all those that love and care about me.
I am so fortunate for so much in my life- family, friends, awesome medical care, wonderful insurance
I am grateful to be able to write as I do, and post my thoughts and feelings.
But I am sorry these are the thoughts and feelings I must write about.
I allow myself to ask “Why Me”?
Why Incurable Myeloma?
Why diagnosed so “young”, back then?
Why my type of Myeloma, that demands continual treatment, non stop.
Yes, that’s right… Continual Chemo, daily, weekly, monthly, forever… if I want to live.
Yet, I know how “good” I have it, in comparison to so so many.
I am sad, angry, frustrated, confused, resentful… what happened to me and husband..
I can’t believe how both our lives were stolen from us, and how our bodies betrayed us.
Yes I understand “the big picture” of things… but how can I not “compare” and not be frustrated with what happened to us individually and as a couple…
I am happy, yet so sad…

Forgive me if I sound ungrateful, selfish, self absorbed, and narrow minded.
Betrayal, unwanted challenges, pain, disappointments, a terminal illness does that to one’s psyche. Or at least to mine.
I used to be so optimistic.
I still am.
I used to be so strong.
I still am.
I used to be so forward thinking.
I still am.
I used to be a lot of things I no longer am.
That’s ok. No it’s not ok.
I am so many opposites now.
But I am here, and I will continue to fight to be here for a long time…

So as I was writing this last on the 8’s post, the blog views counter went from 208,800 to 208,808, to 208,818, to just now… 208,888! How crazy is that. Crazy 8’s! I started posting much earlier today, then things got busy, and now late this evening I am finally posting my thoughts. Unfiltered, unedited. My life never was so self-focused. My life was all about being there for other’s journeys. My joy was in “saving the world, one student at a time”, one animal at a time, being there for my family. Being all about me, is not me…

Good Bye year 8! 
See you on
12.30.18
Just hours now til
9 is official!