New Treatment Plan and Remodeled Dreams

Hello 1.17.17

We all have dreams. Dreams and Goals. Dreams, Plans, Aspirations. Those dreams you’ve always dreamed about. Big or small. Earth-shattering or minuscule. Tucked away in that quiet sweet-spot of our minds and spirits.

No matter your “status” in life, everyone has “dreams”. All those “things and ideas” that inspire us, we wish for, plan for, and work so very hard for, during our lives. For some, those dreams came true sooner than later. For some, those dreams, barely realized ever. For others, dreams are reinvented, redefined, revamped, transformed and modified. Our dreams evolve due to life’s complex speed bumps in our lives, whether major or minor, but always interrupting our lives.

As I process my ongoing, never ending cancer status, always mulling over the Why, How Come, What’s Next, the complexity of “choices” within really having “no choice”, I never forget my life’s goals and dreams. My dreams are not “big”. They are not impressive. They don’t involve huge worldly accomplishments or huge worldly travel experiences. They are small dreams, actually almost “childlike”. Perhaps because psychologically I “grew up fast”, and had to process life deeply early on, unrelated to cancer. I was often referred to as an “old soul”. My goals, different from my dreams, were to always be kind, insightful, sensitive, caring, deeply interested in others, their lives, their goals and dreams…, hence I became a Counselor. I wanted to make a difference in the world in a small way, with humans and animals. And I did. And I feel good about all the “goals” I’ve accomplished.

But then there are my dreams. My “future”, which I never thought would be stolen from me mid-life, has been stolen . I never thought I would lose my independence, my health and my ability to really choose the direction of my life. I was always spontaneous, but always a careful planner. Work hard and be directed while “young”, reap rewards of fun times later. But now, due to how MY body has reacted to MYeloma, how MY body has reacted to treatments, and how MY body has limited Me, most of my dreams have been ambushed, derailed, cancelled and are not possible any more. Literally not physically possible any more. I’m not angry, I’m not whining, I’m not depressed, I am sharing my actual reality. I just cannot do what I had planned to do in the 2nd half of my life. It’s a fact. I’ve reconciled it. I haven’t truly accepted it, but I know (for physical safety reasons) I cannot engage in most of the dreams I had dreamed of.

So with encouragement from our kids, we’re reformatting, readjusting, rethinking, remodeling, revising, adapting dreams. I’m accommodating, but not accepting cancer. I’m adjusting and amending the journey. Creating new options that include what I cannot change about what myeloma has done to me and my life.

One of those dreams of mine is a Red Barn. Yes, a simple Red Barn. There’s just something warm and inviting about a Red Barn. A Red Barn stocked with bales of aromatic alfalfa and grass hay. That scent. So real, so honest, enveloping your being with a sense everything will be ok. You just breathe in peacefulness. If you love nature, animals, horses, wildlife and the sweet scents of the outdoors, you know what I mean. There’s just something about the “ambiance” of a Red Barn. That rustic, vintage aura of a slower, real life. If you are not a farm, or ranch person, then perhaps you know this feeling when you visit a beautiful botanical garden, a country winery, a colorfully landscaped museum… it nourishes your being, your soul. You take deep refreshing breaths, and feel alive and real. Life makes sense.

Knowing the myeloma road I’m on, knowing my reality, knowing 7 years with myeloma is no small feat, not knowing what’s next or how much time I may have left… we’re remodeling our original, 39 year old white barn. It’s a make over, not a new barn. Replacing the white panels for red panels. Redoing the roof. Red Barn walls, inside and out, white trim. Big barn doors, inviting you in. It’s just a simple barn. Horses have never lived in our barn, nor will they ever. Barn stalls are “horse prisons” to me (unless of course, they have open access to a large outdoor corral!). My daily view will be a Red Barn. A simple Red Barn that invites you to sit and bask in the sun. Walk through it, and breathe in the sweet aroma of baled hay. Walk through it and hear horses nickering, birds chirping, dogs barking, flies buzzing. Walk in, and feel real. Real life.

Not done, a way to go, but sure a fun process!
Our son is our “idea man” and “construction coordinator”.
So awesome to have his insight, creativity and love.
And so, I’ve been all too consumed in thinking about my new, upcoming treatment plans. I posted my options in my Friday the 13th post, and I really do appreciate all your spot on feedback, reality checks and thoughtful comments! I’ve also posed my questions in online MM groups, and really appreciate all the honest and encouraging feedback there too. So what have I decided? One more round of Pomalyst at full strength 4mg, adding Velcade, continuing with Dex steroids. I have another Dr appointment this Thursday, and first Velcade shot/infusion thereafter. Yes I’m scared, yes I’m worried, yes I hate new and different side effects, but reality is myeloma currently is “winning”, and I have to brave up, and take this treatment process more seriously. Everyone is encouraging me to start the Darzalex, stop worrying so much about the infusion reactions, and stop playing around with my “aggressive” type of myeloma. Ok, ok… I’m working on it. I will, start next month.

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