Today is truly a monumental day, at least for me. Ten years ago today, I was diagnosed with non-Hodgkin’s lymphoma at the young age of 31.
By: Alyssa Burkus Rolf
Today is truly a monumental day, at least for me. Ten years ago today, I was diagnosed with non-Hodgkin’s lymphoma at the young age of 31. I still remember the shock and disbelief of hearing the words “you have cancer”. I was young, practically a newlywed. I was fit, worked out regularly, had a great life. This was not possible. It took another four months before they could agree on which type of lymphoma I had, and I was told I could expect to live eight to ten years with this disease. I think my doctor was pleased to give me so much time, but it was a death sentence to me. While there is never a precise science to life expectancy estimates with any cancer or chronic disease, in my mind this was a fixed window of time. In ten years, I would be gone. But despite these odds, I was determined to live like a healthy person to the best of my ability.
The first few years of my illness involved the recasting of my identity to that of cancer patient. In an instant, my life was defined in slices of “before” and “after”. Life before seems innocent, light, carefree, and yet I know I had many of the ups and downs facing the average teenager and young adult. Issues that seemed so critical before (“do I look fat in this?”) seemed absurd when thoughts now were things like “can you tell I’m bald under this hat?” or “do you think we’ll ever have children?” or “what if they’re wrong and I have less time than they think?”
I realized too that it would be very easy to slip into the role of needy cancer patient, to play the “c” card to get my own way. While I wanted to be open with others about my experience as a cancer patient, and all of the challenges I was facing, I didn’t want to become one dimensional. I wanted to talk about my life with lymphoma, but also have other normal sides to me. I was conscious of the fact that my form of lymphoma was chronic and incurable, but didn’t want people to get weary of the ongoing drama in my life. Living that fine line isn’t easy, and I know I don’t always get it right.
For years, I thought I was coping incredibly well – being Type A, I was determined not to let this disease get the best of me – and then one night out of the blue, I had a dream where I was told that there had been a mistake, and I didn’t have cancer. I can still feel the sensation of being freed by an incredible weight, one I hadn’t even realized I was carrying because I was “coping” so well, and I knew this illness was a burden weighing heavily on my soul.
Now that I have been living with lymphoma for a quarter of my life, the life before my illness seems far away and it’s hard to believe there was a time when I didn’t have cancer. I remember describing to someone early on in my illness that cancer’s presence in my life was so constant and our conversations about it so frequent, it almost became another person in our marriage. There were three of us now. Like a lingering guest who doesn’t know they are ruining the party and won’t leave the house.
For months now, I have been thinking of this 10th anniversary day with dread, worried that I was somehow nearing the end, going beyond my “best before” date like a carton of milk. It felt like I was going to be out of time, and the walls would suddenly start closing in. I am the person who flips to the end of a book sometimes to make sure the main character is still breathing at the end, and it has been tough not knowing how my own story will unfold.
What I have realized, finally, is today is the day I am being set free. No limits, no fixed timeframes, no expiry date. I am free to set my own timelines, for new adventures, delights and uncertainties ahead. I am still amazed that I have been able to turn my thoughts around so completely, but now that I can look ahead with new feelings of hope, it has reminded me that you really can look at the same glass of water as half empty or full. You can’t pretend to believe it, and it’s not enough if it is only others who believe it for you. Sometimes it starts with a hint of a thought that slowly expands into something deeply felt. Once you truly believe it, you have to fold it into your heart and hold on tight.
Today is a celebration, a day that feels like I’ve won the lottery. If I can beat the odds, one day at a time, just think of the possibilities. Instead of being out of time, no one can tell me what amount of time is left. And little by little, I get to inch my way back to feeling a little bit more like a healthy person. I know the likelihood of a recurrence is high, so I still have to treat this time as precious, but I am no longer living with a ticking clock, and my soul feels . . . lighter. The reality is that this time we call life is precious for all of us, and perhaps my experience will help others be mindful of this in their own lives.
I am going to take some time over the next few weeks and months to write about my years as a lymphoma patient, as a way to share some of my experiences, challenges and lessons I’ve learned. I would love it if you would read along with me and send me your thoughts along the way. For lymphoma patients and their support network, I hope my stories will help during a time that feels so dark, as I know I found strength and comfort in hearing the stories of others who were living well despite their diagnosis. For those of you who are lucky enough to live outside of this crazy cancer world, I hope some of what I write about will help you remember to find joy in dark moments, and let the little things go. We all need to “live the life”, one filled with hopes and dreams and love, whether healthy or not.
Are you living the life? Tell us your story. Have you been recently diagnosed with lymphoma, or celebrating your own amazing milestones? Do you support a loved one or friend on this journey? Or does “living the life” have a different meaning to you? Share your thoughts, and weave your story into our journey.
Here’s to us,
Alyssa
