Remember the Beachcombers? The show Canadians of a certain age have all heard of and never watched. Well that’s where I am, on the Sunshine Coast of British Columbia. Just up the road from Gibsons, in Roberts Creek. I’m watching huge cruise ships heading up to Alaska, and tiny tug boats pulling massive log flotillas back towards Vancouver. I have a thing for salt water. I’m reintroducing caffeine into my diet because a recent American study says that not only is coffee NOT bad for you, but it might actually be good. And as you know that’s all I need to hear in order to invite heart palpitations into my morning regimen. I try not to give more than a moment’s thought to the ridiculous idea that cutting caffeine out of my diet 17 years ago might have contributed to the lymphoma.
I’m on a little holiday after a speaking engagement for the British Columbia Cancer Agency – lymphoma forum. I participated fully - even though listening to docs get excited about new drugs and changes in outcomes from shitty, to moderately shitty, to not so bad, to pretty good (maybe) is scary. Graphs and charts are not my thing. I sat stiff-backed, braced for icky news that, as with most statistically based research, has kind of nothing to do with me.
I found out that Dr. Hodgkin discovered lymphoma in 1832. All lymphoma is named after him, even the stuff he didn’t find. It’s either Hodgkin, or non-Hodgkin. Good branding Doc. Poor Dorothy Reed who came along a few years later and isolated the cell that’s the primary characteristic of Hodgkin’s Lymphoma only got a cell named after her. And she had to share the credit. The Reed-Sternberg cell. Who the hell is Sternberg? And how many of you have heard of that cell anyway?
I’m a bit excited about a new drug, an immunomodulatory drug, called Lenalidomide. The problem is it’s a form of Thalidomide. The Federal government is not happy with the negative associations. Of course if they’d dealt quickly, fairly and responsibly with Thalidomide victims that would all be behind us.
A scientist on the panel spent some time talking about the causes of lymphoma. He mentioned agriculture. Does that mean there’s a higher instance of the disease among farmers? I will NOT be planting vegetables this summer. Hopefully a few pots of basil, rosemary and parsley are not high risk.
Someone asked a question about transformation which I figured out too late to bolt from the room, is when indolent lymphoma changes into aggressive lymphoma. Ouch. I know stats well enough to know that 1 or 2% is not insignificant.
I felt humbled and honoured to be in a room filled with my people. In the morning I met Clayton and his dad Bill. Bill made me think of my parents, and how no matter how old your kid is, a cancer diagnosis brings an unimaginable pain. Clayton’s in his 30’s with two young daughters. He told me his Hodgkin lymphoma story - not yet a year old. Unlike me, he had some scary symptoms. His own advocacy probably saved him from drowning in the liquid that had filled his lungs. He remembers every date, of every appointment, leading up to diagnosis then on to treatment. He apologized for talking my ear off. I was glad to listen. We need to tell our stories, particularly to those who can relate. I so understand that need. Clayton looks great. The treatment worked well. We will remember each other.
The event was wonderful – the speakers, the volunteers, the lunch, but mostly my fellow lymphoma travellers. When Susan, who picked me up at the airport, told me she’s now nine years out and no longer thinks about her lymphoma, I felt a rush of relief that nine years was possible, that freedom from the shackles of constant worry, was likely in my future. In the morning as we were driving to the event she said they'd start the day by recognizing an older fellow John who had contributed much time, money and care working with other lymphoma patients. “Don’t worry,” Susan told me. “He didn’t die of his lymphoma, it was a skin cancer.” She wanted me to be prepared.
I still cringe and worry but the forum didn’t freak me out as much as I thought it would. My cancer skin grows thicker all the time.
And oh ya, I self-published a memoir - Lost and Found in Lymphomaland. People bought it. I signed copies. I felt a tiny bit like a rock star.