One year and six days ago I received an unexpected diagnosis. I stood at the edge of the cliff and looked straight down into the abyss. It was terrifying. And then it wasn’t.
It was a little over a year previous to that diagnosis that I had stood with my feet on a narrow platform leaning out over thin air to grab the fly bar, ready to take my metaphorical leap-of-faith on the flying trapeze. My stomach was somewhere in my throat while I gulped in huge breaths of air, as the instructor waited patiently for me to give the okay to proceed. It was terrifying. Until it wasn’t.
Two hours later and multiple trips up that endless ladder—my body pumped full of adrenaline—I was exhausted. My legs were jelly, my hands bloody, and my arms could no longer stretch over my head. But oh what joy, the feeling of riding the air through a back somersault that ended in the safety of the net below. My forty-seven year old body wasn’t exactly in prime condition for such activity; it took months to recover from those few hours. But I wouldn’t trade that experience for anything. Flying through the air was liberating. It changed me.
When you’ve felt like crap for months and months and your quality of life seems to be slipping away, a diagnosis—even a life-threatening one—can come as a relief. Finally some answers! Finally I will feel better! I was put on a magical little pill. Taken daily, I was told it would flip the genetic switch back off, the one that was sending incorrect information to my bone marrow, telling it to produce too many white blood cells. And indeed it has done just that. The Philadelphia gene has been chased away and the leukemia is under control. As long as I remain on this daily chemo-therapy pill, I will not die of leukemia. (Which means I will potentially take this pill until such time as I die of something else.) The oncologists are overjoyed by this progress. And of course so am I.
But there’s just one problem. I still feel crappy… I suffer from debilitating fatigue along with occasional extreme bone and joint paint. It also appears that if someone sneezes near me I end up in bed for several weeks with a cold virus. I have learned that when an oncologist asks how you are feeling, they really do not want you to tell them these things. I have been told in no uncertain terms that how I presently feel has nothing to do with leukemia or the protocol of side effects of the medication. It was my extreme fatigue that sent up the red flag to begin with, the thing that led to the ultimate diagnosis, but in their eyes it is otherwise unrelated. So why am I still feeling this way? Every health practitioner suggests that someone else might be of more help.
And if you are reading this and suddenly have the urge to give me health care advice, please don’t. I am on my second highly-recommended oncologist; I also have a primary care physician, a holistic physician, an acupuncturist, a massage therapist, and a spiritual guide. Along the way I have also been sent to a rheumatologist, and have had more medical tests then I ever thought imaginable. I cannot be more proactive in my search to find support for my mind, body, and spirit. Really.
So where does that leave me? That’s the question I have pondered the most of late. What I think I am left with is resignation. In the winter I hibernated in between appointments with doctors and healing practitioners. I told myself I was doing everything “right” and that my energy would return with the spring. Despite a bit of a cough and cold virus, in late May and early June I allowed myself to schedule social activities. One day toward the end of June I felt so lousy I got back in bed and stayed there. For two weeks. Pretending to feel okay and going back to my old social calendar was evidently not the best idea. It appears I am a changed person and that over-scheduled life I once led no longer works.
Each day, each week, I learn my limits. I am learning to just “be” in the place where I am. That means drawing healthy boundaries and allowing myself to retreat whenever necessary. It means not being available to friends, family, or acquaintances (which is a really hard one for me.) And deciding for myself what I can and cannot accomplish in any one day or week or month. And being okay with what I don’t accomplish (another difficult one). There are no more calendars in my head with imaginary dates marked “THIS is the day I will feel better.” Some days the only thing I accomplish is taking a long afternoon nap.
During a recent meditation session with my (earthly) spiritual guide, it was suggested to me that I should stop focusing on what I can’t do, but enjoy what I can do. It was a light bulb moment that was reinforced just this week when I listened to an interview with a lady from Pittman, NJ on the occasion of her 107th birthday. When asked what her secret to a long-life was she joyfully replied… “I do what I can do, and I don’t do what I can’t…” Perhaps it really is just as easy as that. The concept was liberating.
This notion was on my mind when I received a summons in the mail to report for jury duty. The old me would have dutifully filled out my questionnaire to report for duty as I have done many times through the years. This time I read through the questions and stopped at “are you capable of serving on a jury?” Am I? If I got picked for a trial, would I be able to report each day for the duration? Oh such conflict. I want to be a good citizen of my city after all! Finally I decided the answer to that question is no. No, I am not capable of serving on a jury right now. I asked my oncologist for medical verification to be returned with my court summons. “So you want to play the leukemia card?” she said. Yep. I certainly do.
What a journey girl!! Blessings toward you as you move through each day. My brother just got diagnosed with Luekemia last week. I can not imagine all that goes with it such an illness. I send you light and love as you find peace to be present, love what comes, do what you can and know that life is fleeting, simple pleasures fill us up and love and laughter is the best medicine. I will keep you in my prayers!
Thanks so much Lyn. I appreciate the sentiments. So sorry to hear about your brother. Please send him my regards…and tell him what my oncolgist said initially…in the history of leukemia, he picked a good time to be sick as they have advanced the treatments dramatically in the last few years. We now LIVE with it, not die from it! I never had great faith in pharmaceuticals…but in this case they are life saving!
Hi Mickey, I didn’t know about your diagnosis. Saw your post on FB and then linked to your blog. Thank you for sharing. Your journey sounds very difficult. My thoughts are with you.
thanks for the kind words Joan!
Sending you love. And if there’s anything you “can” do that you’ve been wanting to do, that is more interesting for fun with a friend to come along, let me know and we’ll do it.
thanks Andrea…of course flying to Sacramento is one of those things I want to do!
I was just checking a few of your posts and had a quick question about your blog. I was hoping you could email me back when you get the chance -emilywalsh688 (at) gmail.com- Thanks : )