I can’t help but think back to when I received my diagnosis, and was told what my prognosis would have been had my doctor not been so astute in looking specifically for amyloidosis. Researchers are working tirelessly to increase awareness of amyloidosis in the medical community, so that doctors will request the special tests necessary to detect it sooner. While I felt fortunate that my disease was caught early enough for proper treatment, I couldn’t help but wonder at the time if I would see my 10th wedding anniversary, or Jason’s 5th birthday. Even though I was a good candidate for a stem cell transplant, the doctors didn’t mince words in describing how intense and aggressive that treatment would be, and the risks involved. I wanted to see Jason start kindergarten, learn to read, take off his training wheels. I left my doctor’s office unable to fathom my little boy, who hadn’t even turned four yet, growing up without me.
Four years, two bone marrow transplants and two hip replacements later, I couldn’t be more grateful to have seen Jason turn 4, then 5, 6, 7, and now, 8 years old. Rather than worry about a relapse, I keep my eyes on the prize by staying focused on Jason going to middle school, having his Bar Mitzvah, and learning to drive (you didn’t think I wanted to leave *that* to Steve, did you?!). It’s easy for anyone, let alone a parent, to get stuck in a “why me?!” type of mentality. I credit much of my healing to concentrating on what *is* working, rather than what *isn’t*, and focusing on a future of health and vitality. I visualize going somewhere fabulous with Steve for our 15th wedding anniversary (or instead of a trip, jewelry would work just fine, Dear), doing something big for Jason’s “double digit” 10th birthday, or finally achieving my dream of going to Canyon Ranch for my 50th birthday (or perhaps we can push it to 45, Honey??).
Every birthday that comes and goes, whether mine or someone else’s, fills me with a sense of happiness and gratitude. You won’t find ME complaining about getting older, in fact just the opposite! In 2007, as I drove away from my doctor’s office, if you had told me that there would be a “gift” in this whole experience, I would have thought you were crazy. But now, looking back, I can honestly say that things do happen for a reason, and many good things have come from what was originally a frightening situation.
Gift #1: I appreciate my body
And I don’t mean just how I look on the outside, but the health and proper function of the inside. From a very young age, I remember having poor body image and not feeling confident in how I looked. Years of ballet with very slender girls, taught by a former principal dancer of the Boston Ballet didn’t help, and I remember trying various diets and exercises in an effort to look like the models on the cover of Seventeen magazine. Even throughout college I was self-conscious about my figure, and endured years of negative self-criticism. When I entered graduate school and began walking all over Boston and teaching group exercise classes, I finally lost quite a bit of weight and achieved an envious size 4. But I didn’t feel any less insecure; in fact I continued to pressure myself into “looking” a certain way, especially once I began working as a personal trainer. I continued to obsess about how I looked, like most women, before my wedding, and during and after my pregnancy.
One thing this entire experience has taught me is to appreciate the *inside* of my body and how lucky I am that is healthy and working properly once again. While I admit I eat well and exercise in an effort to stay at my “happy” weight and size, it is no longer the end-all, be-all of my existence. I’m proud to be 42—with the insides of a three year-old!
Gift #2: I am more “present”
I used to get so hung up on the house looking perfect, things going according to plan, or finishing the dishes/laundry/errands before I could relax and enjoy my family. One thing I learned from this experience is when faced with your own mortality you don’t care about the dishes being clean. Prior to my illness, I had a hard time going to bed until everything was “done”. I’m ashamed to say I would find my mind wandering as I was playing with Jason or reading him a goodnight story (“As soon as this is over, I have so much to do...”). While I wasn’t proud of this distraction, I told myself it was just part of being a busy parent. After my diagnosis, I instantly became much more present and mindful of the moment, whether with Jason, Steve, or my friends. I didn’t want those special moments to end, and I certainly didn’t want to waste them by mentally running down my to-do list. In fact, I found that the more present I was, the more I enjoyed it. How wonderful to actually *relish* a bedtime story, a trip to the pool, a movie with popcorn under a blanket?
Gift #3: Little things don’t upset me
After buzzing my hair off…TWICE…I’m so happy to have it back, you’ll never hear me complain about having a bad hair day. When I need to cancel plans to stay home and take care of Jason when he’s sick, I’m glad I’m around to do it. When I turned 40…then 41…then 42…I didn’t complain about getting older. I celebrated! When there’s 3 feet of snow on the ground, I won’t lie—I don’t love it. But things could be so much worse. Rather than focus on what’s not working, I try and shift my attention to what *is* working. Jason and I call it “changing the channel”. Steve just did the laundry and accidentally washed and dried a brand new top that required a cold, gentle cycle and NO tumble drying. Needless to say, the floral appliques were curled up and falling off. Was I happy about this? Of course not, but as soon as I started feeling upset, I thought to myself, “Change the channel!” It’s only a tank top (thank goodness I bought it at TJMaxx). Rather than waste energy on the negative, I do my best to look at the positive.
Gift #4: I’m able to help others
In an effort to increase awareness about amyloidosis in both the general public and medical communities, I’ve shared my story with our local paper, and been featured on an episode of Mystery Diagnosis. One local woman, frustrated after numerous tests failed to explain months of bizarre health symptoms, actually took the article to her doctor and demanded to be tested for amyloidosis. She tested positively, and was treated successfully at Boston Medical Center. She underwent her first stem cell transplant at the same time I was going through my second, and she and her husband have since become good friends. I also receive phone calls and emails from people all over the world who have seen the Mystery Diagnosis program, and communicate regularly with other newly-diagnosed patients via email support groups. Most recently, I became friendly with another lovely woman who is currently being treated at BMC. I am grateful that my experience has made it possible for me to offer support and guidance to others going through the same scary time.
Gift #5: I don’t take things for granted
My diagnosis came completely out of the blue—I was a young, healthy person, an avid exerciser, a nutritious eater. I don’t smoke, do drugs, or drink too much. I don’t even bake in the sun, so to be told that without prompt and proper treatment my prognosis was 12-15 months was quite a shock. If anything, this experience has given me a greater appreciation for my life and how I live it. Instead of a New Year’s Resolution, I dubbed 2011 “The Year of Awesome”! I want my coffee to be awesome. If we go out to eat, I want the food to be awesome. If I’m hanging out with friends, I want that quality time to be awesome. We never go to bed angry, and I make family time a priority. Things can turn on a dime at any moment, so I’m mindful of how I spend my time and energy.
A few years ago you couldn’t have convinced me that anything positive would come out of this experience. I could never have imagined that it would lead me to write a book to help other families, but if I had to go through all of that to get to this point, I can honestly say I am more deeply fulfilled and happier now having faced that challenge and emerged a stronger person both mentally and spiritually.
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