I Miss My Life Before Illness- Too Honest Contemplations…


Hello March…

Thank you to all of you that messaged me about February not having 2.29.19 and “cheating” us out of my “on the 9’s” post :)) I debated posting on the 28th or the 1st, but I really didn’t have any new myeloma news or inspiring stories to share, and I wound up sick with a lousy sore throat, head, chest cold, that I am still battling, and I just haven’t felt very good… or inspired :(( 
Yes, I’m too aware that my updates now have a similar melancholy theme, and I wrestle with this blog becoming a whiny, “poor me syndrome” rant. But it is what it is, and my life on so many levels really is “a poor me syndrome” story now. My life has become almost completely centered around illness. Centered around the daily tasks to just “get by”, to attempt to feel somewhat ok, and to manage medical side effect nonsense that goes on in my life, as a patient and caregiver. Take this pill, do these chores, micromanage this and that, take this medication, visit the bathroom, do theses chores, clean here, clean there, try to eat something interesting, contain emotions, take this pill, do these chores, process life, visit the bathroom, clean this, clean that, take more medication, control emotions, etc etc etc. Caring for me, and being a caregiver for my Alzheimer husband is honestly taking a huge tole on this once, positive, optimistic, happy go lucky, playful, passionate about life, gal. 
In all of this, I work hard to not fall down the negativity rabbit hole. I am always self counseling, always reminding myself of the wonderful things still in my, our life. Reminding myself of all the good things, and blessings abound in our life. Reminding myself of all the wonderful life experiences, events, careers, family, animals, health care, etc, we had, have, that so many do not. But dang it, when illness steals your life, and your entire life is centered around trying to feel and be ok, with the never ending physical and emotional demands of that… it’s hard not to be sad, weepy, why me, how come, with terminal illnesses, that honestly Will Not Get Better. Our individual situations may stabilize here and there, but Unlike so many other illnesses, where one can look forward to being well eventually, Myeloma and Alzheimer’s are just not in that category. Myeloma is insidious, ferocious, incurable, and must be treated continually, forever and ever. Non Stop Chemo to keep myeloma suppressed, and me alive. Alzheimer’s just gets worse every day.  Every Day. Stealing one’s mind, body, life. There’s no going back on either one of them. There’s no getting better, just trying to have better days.
I am not bitter or resentful of others. Jealous and envious, yes, of their freedom. I am happy for everyone’s good health, or recovery from their illnesses. I cheer on those that can truly enjoy the life they’ve worked hard for. But I am so sad for our predicament. So sad for our stolen lives. So sad for what could have been. We’re 2 people that worked very hard in life, to have a good life. 
I wrote these random thoughts to myself in a text message, late one night:
Illness has stolen my life, my spirit, my freedom, my spontaneity 

There was so much I wanted to do and accomplish 
So much I had looked forward to at this point in my life
So many friendships I wanted to nurture and grow 
So many events I wanted to participate in 
After working hard all my life, I just wanted to play my second half of life
I wanted to continue to learn, give, create, inspire and be inspired
But illness steals your spirit, your energy, your motivation, your ability to do much at all 
Illness has stolen my ability to accomplish, do, engage, go, be me
Illness is like a stealth snake, creeping in, attacking, retreating, attacking again, retreating again, curling up in a corner, waiting, always ready to attack 

I’m not depressed, I’m sad
I’m also angry. I never was an angry person. I have anger now. 
I’m depleted, exhausted, physically and mentally
I wake every morning, having planned during my sleepless hours, all the things I want to accomplish 
But illness has stolen my energy, my ability to accomplish all my ideas
Illness has almost stolen my spark
I know who I used to be, I know what I am capable of, and that frustrates me even more

What really is my purpose now
Am I just living to die, just existing, just getting by each day, to get to the next… For what?
I remind myself about all those that depend on me, love me, need me
I live for everyone else, caring for everyone else, resenting my body for how it has betrayed me, and how yucky it feels most all of the time

Illness surrounds me 24 7, and has stolen my life
Stolen my dreams, my ability to accomplish my goals
I had so many
So many dreams, things I wanted want to do, accomplish
My life was cut short, completely changed at 50, 9 years ago

Yes so many people reinvent themselves after illness, tragedy, disaster, etc
But I didn’t want to reinvent myself
I worked hard all my life to create who I was, and by diagnosis time, I liked who I was, I liked the path I was on, I liked where I was headed, and what my future held for me 
I had so many “mid life” dreams and goals, so much I wanted to accomplish between 50-100

But illness won’t “allow” me to be me anymore
Illness stole me
Illness changed me
Illness deflated and depleted me
I didn’t want to change, I didn’t need to change
I’ve done so much positive growth awareness all my life
I just wanted to become more of who I was
Continue to give to others
Engage in life
Participate in life’s joys and beauty
I miss being spontaneous

So many are confronted with life crises and want to change
So many have wounds to heal, new goals to achieve
I didn’t want to change, I just wanted to become more of who I was
I wanted to complete me, do more of what I was already doing
Continue to help others complete themselves
Help other help themselves
Save creatures
Now I can barely help and save myself 

My life was stolen from me 
My lurking stealth snake, sneaks in for the bite, takes the bite, injuring me, but not killing me, but injuring me more each day
I’m still alive, my body is still alive 
My mind is too alive
My body and soul slowly dying

I sound so ungrateful for all that I have
I am not
I am mourning who I was
Who I could have been
What I could have accomplished
Who I could have become, the 2nd half of my life
I mourn my stolen energy 
My enthusiasm 
My spark
My get up and go
My ability to inspire and be inspired
I mourn stolen options and opportunities 

I miss intellectual connections with friends, students, colleagues. My life was all about connecting with others, analyzing deeply with others, sharing insights, becoming more of who we are. But Myeloma and Alzheimer’s has stolen my life, my energy, my spirit, my daily functionality. 

I can only try to stay one step, one pill, one infusion, one treatment ahead of cancer eating me up alive. Similarly, Jim’s disease is stealing his life every day, as he’s really just “existing”… it’s so tragic. We are both living to die, our bodies and our diagnoses own us, and I don’t pretend otherwise. When, not if, this current treatment fails me… then what… I’ll find another one, then another one, then….

Yes, within it all we have moments of sunshine, moments of laughter and love with family and friends. Moments that remind us of the joys of life. But sometimes, the reminder of what was, and what could be, is too painful. There’s a vacancy about my life now. So many abandoned rabbit holes, just waiting for me to slip and fall into..

I had a beautiful life, and for that I am forever grateful
I have a beautiful life, but it tortures me with what could have been.
I still have love, loved ones, comfort and occasional humor in my life, and for that I am forever grateful. But I silence myself, my dreams, my plans…

Loyal readers-
I debated whether to post my inner most feelings like this. 
Is my honesty and candor too much?
Perhaps I should limit my posts now to just my myeloma status and lab results? 
Thank you to those that have read this far, and continue to read and follow along with my life challenges… 
I hope your life is “working” better for you, than mine is for me… and I hope you are feeling well, and those you love are are well too.