On the day of my 48th birthday—not quite three months ago—I received a diagnosis of leukemia. Chronic Myelogenous Leukemia. My doctor apologized for giving me this news on that particular day, but for me it actually felt like a good omen. Dr. Haegele, my oncologist hematologist, handled it very well. Knowing that I had recently co-authored a book on a historical subject, she approached our session similarly. “In the history of leukemia,” she said, “you have picked a very good time to be sick.” It wasn’t that long ago that a diagnosis of leukemia would be a death sentence.
The diagnosis didn’t feel like the end of the world to me. I did not feel like I had been handed a death sentence. Intuitively, I knew what was coming, and had been able to wrap my brain around the concept before my husband and I had entered the doctor’s office that particular day. I do remember on our previous visit to Dr. Haegele’s office thinking to myself… “I’m at an oncology clinic…I don’t have cancer…why is everyone being so serious with me?” It was the call from the doctor’s office several days before the diagnosis that really put me in a tailspin. I answered the phone and heard “…the doctor got your tests back and she needs to see you right away.” Um…really?! You can’t tell me any more than that? That phone call was on a Monday morning…and the receptionist scheduled the follow up appointment for the next Thursday, two and one half days away. “Right away” felt like an eternity.
My husband refused to “go there”… everything will be okay, we don’t have to think about it until we see the doctor, I’m sure it’s nothing, etc. etc. Not me. I had to go down the rabbit hole. And I couldn’t tell anyone about it. I thought it would be cruel to provide the “maybes” to my mother, sister, and closest friends. As far as anyone knew, I’d gone through a bunch of testing, nothing beyond anemia had come up so far, and I wasn’t scheduled to see “the doctor”—who I’d never referred to as an oncologist—until several weeks later. Only my husband and I knew “the doctor wants to see you right away.”
I shouldn’t say no one else knew. When that phone call came, I happened to have been running errands downtown. My first call was to my husband at his office, and well, he wasn’t really equipped in the middle of a workday to deal with what I was thinking at that particular moment. Having finished the task at hand I started walking home. I felt bereft and very alone. I wanted to cry, but I was in public, surrounded by strangers. Heading south I turned left down Pine Street. This is a street I walk often, not quite daily, yet a street I have walked down countless times over the past seven or so years. Before I could start feeling too overwhelmed and sorry for myself I happened to look down as I walked across Quince Street, a small side street that runs into Pine. And there it was…a quarter embedded in the sidewalk directly in front of me.
In full distraction mode, with my head full of competing thoughts, I happened to look down at the EXACT right moment…and like a needle-in-a-hay-stack, there it was…a powerful symbol that I was NOT alone. (Someday, in this blog, I will surely tell you why that quarter, embedded in the concrete at my feet, held such significance for me. Just know that I couldn’t have received a clearer message than that.) I took my cell phone out and snapped a picture. As I captured the image I heard in my head “everything’s going to be okay”…and I immediately started to feel better. Several more blocks and the thoughts kept generating as I walked on. A block from my house, a bicyclist crossed my path. I didn’t realize at first that I actually knew the person on that bike. It was my friend Anne. We hadn’t talked in months and months. But in that moment I recognized a kindred spirit, someone who would understand what I was going through. It was not that long ago that she had received a very similar phone call…the doctor needs to see you right away. I took one look at her and started to cry. The universe had provided me with exactly what I needed, a gracious friend who was also a breast cancer survivor. We sat at my dining room table and she talked me off the cliff. It was my one and only meltdown.
So, three days later, when I heard those fateful words…you have leukemia…I was ready. There were no tears. Just a solution. And a game plan. It all came as a relief. After more than eighteen months of “not feeling quite right” I finally had an answer. I haven’t yet talked about the diagnosis journey, that story requires a separate blog post of its own…but when I say “not quite right”…imagine a day where you find yourself sitting at the kitchen table looking for the strength to make yourself breakfast…and somehow all of the sudden its 6 o’clock at night…your husband has returned home from a full day of work, gone food shopping, made dinner, and cleaned the kitchen…and you realize you’ve been sitting in the same chair all day…and you’ve accomplished not one thing other than watching television and returning a few arbitrary emails. You don’t feel depressed or unhappy…just completely exhausted and guilty. And when you finally walk up the two flights of stairs to your third floor master bedroom you can’t quite think of a word that explains how you feel. Your muscles and joints ache…is this what it feels like to be an old person? “Bone weary” you think… my body has worn out. And when the Advil kicks in and you can finally fall asleep, the hot flashes wake you up. And as you listen to the night sounds, the dogs barking, a train in the distance, your husband’s heavy breathing…your mind starts to twist around all the projects you’ve left undone. What can I push back further? Must I get dressed and leave the house tomorrow? Can I postpone? The next thing you know it’s morning…the space beside you is empty and the sun has found its way through the cracks in the window blind. The city beyond your window is already in full swing. It’s time to start another day. You are still exhausted.
Luckily I enjoy a very flexible schedule and the majority of the people in my life had no idea of my “secret life.” But it was getting more and more difficult to keep the balls spinning in the air. So if my diagnosis didn’t feel like the end of the world, what did it feel like? Certainly there was the “everyday” stuff… dealing with a new daily chemotherapy regimen, the health insurance company, weekly blood tests…and then the question of who to tell what and when. All of that was exhausting enough. But there was a new found freedom as well. I could now stop pretending. Sleeping late, taking afternoon naps, wearing my pajamas for three days straight, ignoring phone calls and emails…I didn’t have to hide it anymore. I didn’t have to feel guilty about not accomplishing anything on my “to-do” list (although that is a constant work in progress.) This big, scary diagnosis of leukemia was something more than the purely physical. Yes, I am sick. My body needs to heal. Healing takes time. But there is something more at work here. Perhaps, just perhaps, there is something beyond the end of the world…something beyond our everyday tasks in this physical world. Sometime in my life I learned that everything we experience serves a purpose. The older I get the clearer this notion becomes. If you pay close enough attention you might first hear a whisper…something’s coming it says, you might want to prepare or perhaps change course. And if you ignore the whisper it grows and grows in strength until such time that it can no longer be ignored… the whisper has become a hurricane. I have experienced a number of my own personal hurricanes…bankruptcy, infertility, the death of close friends and beloved family members…along with a number of high-wind events (that might merely be classified as more category 1 or 2 versus a full on category 5 hurricane)… a major lawsuit, being laid off from a job, marital discord, and annoying relatives, to name a few.
Looking back, perhaps any one of those events could have become “the end of the world”…but hindsight shows they were also the beginning of a new existence—a new world—I hadn’t even imagined. A world full of new and infinite possibilities. Each of these experiences carried with it great lessons and a new way of being. For that I would not change any one of them (which does not mean I would ever want to go back and relive them though!)
And so it seems the world as I knew it has changed once again. I know there is a reason…there is a gift in this experience…just as there was in every other earth –shattering event that came before. I am in the beginning stage of a new journey seeking my new normal. My path has just now started to emerge from the fog. I have not the slightest idea where it leads, but I have complete faith that it is exactly the place I need to travel.
I am not alone in this journey. I actually have quite a crowd…my husband and my mother, my sister and my nephew, and a few incredible friends top the list. But I am also acutely aware of the others that reside beyond our physical world…spirit guides and healers, and family and friends who have already crossed over. And the ancestors. Those of you who’ve read my “shaking the family tree” blog have heard some of the stories of my ancestors and how they’ve made their presence known over the past year. Even before my diagnosis, they were a great source of strength and inspiration.
Just a few months back my mother happened upon an envelope of pictures she hadn’t remembered seeing before. My paternal grandfather had evidently given them to my father at some point, when they were put in a box and forgotten. Grandpa Fred has been gone more than 25 years and my father more than six. Luckily, my grandpa had numbered each of the photos and thoughtfully typed out a corresponding list of descriptions for each photo. About photograph #4—my favorite—grandpa Fred had the following to say:
“Aunt Katie, Uncle John and Aunt Mary, taken at my Uncle Will’s place about 1926 or 1927. Uncle Will had cancer and they came out to see him shortly before he died. Uncle John had never been out of Dayton [Ohio] and while here [in desolate Western Nebraska] they took him up to my Uncle Will’s ranch about 30 miles NE of Scottsbluff and he thought he had come to the end of the world, at least, he said, if that wasn’t the end, you could surely see it from there.”