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the road is long (el camino 2013)

When I was first diagnosed with acute myeloid leukemia just over a year ago we naively thought that, if all went well, this whole cancer thing would be done and dusted by Christmas. With chemo, radiation, and support from my sister's stem cells, we would go into battle with the leukemia cells, and by Christmas I'd be home celebrating good health and good cheer with my husband. Well, I was home by Christmas. But the war definitely wasn't over. 

Recovery from leukemia takes a bloody long time. The past year has been plagued with fatigue, nausea, reflux, hand-foot syndrome, losing all my nails, weight loss, weight gain, mood swings, depression, early onset menopause, chills where I felt like someone was pouring cold water down my chest, and hot flashes where my skin prickled like it was on fire. I've had 8 bone marrow biopsies, an endoscopy, and countless blood tests. 

I have discovered that I am not a patient patient. I want to be better yesterday. I want to be back to pre-cancer Lulu IMMEDIATELY. I want to be "normal" again NOW. I don't want to be told nine months after the transplant that my immune function is still low and I can't go back to my old life, work around children, ride the subway on a daily basis, or travel. I don't want to go to counseling and be so exhausted that I can't do anything else for a few days. Nope nope nope. I want full-of-energy, unstoppable, singing and dancing, running, yoga-ing, fit Lulu back please. And did I mention, I. Want. It. Now???

My lack of energy means I can't work full-time. Even if I had the energy, my immune function means it's not safe for me to commute to work every day anyway. I've lost my singing voice - a whole octave was vanquished by the chemo and radiation. I can't run - even a light jog to the end of the block leaves me puffing and exhausted. It is frustrating, and makes me depressed and angry. 

With all this in mind, I am incredibly lucky. Three rounds of chemo, full body radiation, and a stem cell transplant later, I am cancer free. I AM on the road to recovery. My energy is slowly coming back. I've started seeing shows again. I have been told by an excellent voice teacher that my singing voice will (eventually) return. I've signed up for a post-cancer program that will (hopefully) get me back up and running. 

I'm going to share some of my recovery process here. The road is long, but with your support and a little bit of luck, I'll be 100% back to Me before we know it. And it will feel like all my Christmases have come at once.  
5 Comments
Bob Steiner - 11 years ago
Luisa- it was such a treat to meet you yesterday. Best wishes for a year of recovery of all of your former energy and passions.
Bailey Stenson - 11 years ago
Keep on Keeping on Luisa! Patience is learned one breath at a time!
Thanks for your courage, perseverance, beauty, sensitivity, and ability to use your anger for your own good! Much love!
Talya - 11 years ago
Luisa. My goodness. There are no words to do justice to what you have experienced. I am thinking of you as you enter this next phase. You go lady! xxx
Angie Ussher - 11 years ago
It is so great to read you are cancer free. You have overcome the worst and even though it may take awhile, I know you will et back to your old self. You're definitely an inspiration.
Luisa - 11 years ago
Thank you for your lovely and encouraging comments my wonderful friends! xxx