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You have . . . what?

By April 6, 2013February 26th, 2020No Comments

The day I was diagnosed will be forever etched in my mind. Sitting in the hospital outpatient clinic, a week after surgery, waiting to hear my fate.

By: Alyssa Burkus Rolf

The day I was diagnosed will be forever etched in my mind. Sitting in the hospital outpatient clinic, a week after surgery, waiting to hear my fate.

It all began with a small lump in my neck. No bigger than a pea, painless, lingering for more than a year. My family doc wasn’t concerned, said it was “nothing”. Six months later, at the end of a massage, the therapist said “Could this be a lymphoma?” In my head, I remember thinking “What is that? Something bad?” Another three months passed, and during an annual checkup with a new family doctor, I happened to mention this lump that wouldn’t go away. A closer look found some additional lumps under my arm, which led to tests. Blood work and chest x-rays, but both were normal. I really thought I was fine. My lumps were a worry to my doctor, but not to me. I was referred to a surgeon for a biopsy “just to be sure”. I told my family not to worry – I had started reading about lymphoma and had none of the other symptoms. We were asked to return a week after the surgery for the results.

There’s a look people have on their faces when they deliver bad news. Their features soften but their jaw is clenched, eyes radiating sympathy and concern, knowing the pain they are about to impart. My surgeon was textbook in his delivery, compassionate and kind, yet clearly limited in the information and support he was able to provide.

I didn’t lose my composure in that room – it took a while before I understood the true impact of the news. I asked what kind of lymphoma I had (no details yet), and asked about next steps, which I learned was a referral to a local hematologist.

Learning about a disease you have never heard of before is a huge challenge for lymphoma patients. Later I would learn that more than 50% of people diagnosed with lymphoma have never heard of it before their diagnosis, or aren’t aware that it is a form of cancer. Even though it isn’t rare and is in the top 5 types of cancers that people get, there is a lot of confusion and misleading information. We kept looking for evidence of a good outcome, proof that we could be assured of a similar fate. Conversations with my husband about famous people who had survived lymphoma were sometimes like this:

Me: You know, there was a character on TV who had Hodgkin’s.
Him: Is that the same thing?
Me: I think so. She was cured in 3 episodes.
Him: Wow, that’s great!
Me: Not in real life. On the show.
Him: Oh.

Managing the situation moved into communications mode – how in the world do you tell your loved ones that you have cancer? We decided to create a list of people who needed to hear from us directly about the news, and not via the grapevine. I still remember where I sat as I made those calls one by one, what I said, how I felt. After a while, we asked friends to call others on our behalf because the conversations became overwhelming. For a while, I wasn’t sure who knew and who didn’t. If I saw someone I hadn’t seen in a while and they asked how I was, in my mind I was thinking “What do you mean? In general? Or cancer-wise?” Many thought we were calling to tell them we were expecting a baby, which broke my heart every time.

How do you begin to explain a disease that few have heard of before? Many people have heard of Hodgkin’s, so when I told people that I had non-Hodgkin’s, they often thought that meant it wasn’t cancer. Most did not know what to say, how to support me, or provide any reassurances about outcome. They were as lost as we were. I carried the double weight of communicating the news and educating about the disease.

I am forever grateful to those who took it upon themselves to learn more about lymphoma, who didn’t need to hear everything from me, and who sent me information they found. My mother-in-law made an appointment with her own family doc to understand this disease that had joined her family. Others felt badly when their mouths got ahead of their brains and they mentioned a person, famous or not, who had died of lymphoma. These slips were usually followed by “oh, but I’m sure you’ll be fine.”

Ever noticed that as soon as you consider buying a type of car, you end up seeing it everywhere? The word lymphoma kept appearing out of the blue – in newspapers, on TV, in magazines. We still joke about the fact that if a medical drama has a “mysterious” disease that no one can diagnose, chances are it’s going to be lymphoma.

One of the decisions every cancer patient has to make is how far to share the news. Only immediate family? Close friends and neighbours? What about at work? What if I am a public figure? What if I change my mind later?

You can’t “untell”, but I believe that for most people, the weight of the secret is too tough to bear. It may be difficult to weave the role of cancer patient into your identity but using up energy to keep a secret can be overwhelming. I still struggle with this. Not everyone at work knows my “situation”, even after ten years of treatments and recovery. Blurting out the words “I have cancer” feels like a play for sympathy. (“Oh, sorry about your cold, did I mention I have CANCER?”) But the flipside is that because it is a chronic and ongoing battle for me, it is a huge part of my thought pattern and becomes part of conversations. Many decisions – job, kids, vacations – hinge on whether an upcoming treatment, whether planned or unexpected, would have an impact.

The reality is that all of us have secrets, dramas, stressors in our lives that we share with very few people outside of our circle, but often impact our lives in significant ways, sometimes without us realizing. Being able to bring our true selves to every aspect of our life would be so refreshing, so freeing. This freedom is the life I am trying to live – genuine, grounded in all things that matter, and being mindful of the things that keep me healthy. But cancer isn’t going to be the only thing people know about me. As Laura, a 20-something lymphoma survivor told the crowd at a fundraising event on Friday night, “Cancer is a chapter in my life, but it isn’t going to be the whole story.” Amen to that!

Here’s to us,
Alyssa