21 Nov My Swedish Relatives
I hadn’t been feeling well for some time. I was exhausted, sleep did not recharge my batteries and work had become almost impossible. Then, in June, I was diagnosed with Waldenström macroglobulinemia, a rare type of blood cancer, named after the Swedish scientist Jan Gösta Waldenström.
Waldenström is a malignant, slow-growing non-Hodgkin lymphoma. The good news: there are highly efficient therapies available that lead to remission and even though the disease as such is not curable, patients are able to lead a normal life and grow old. It will always remain a part of my life.
While the diagnosis came as a surprise, my husband Lutz and I were relieved that we were now able to put a name and treatment to what was happening. After weeks of specialized blood work, MRI and bone marrow biopsy, the mystery was solved.
I have been participating in seminars on living in the moment with Ariel & Shya Kane and the Transformational community for about 15 years, and Lutz started attending as well when we met in October 2017. We both feel the benefit of strengthening the muscle of being present and dealing with what is in front of us, instead of getting lost in future worries or drama. After the diagnosis was made, we rearranged our plans and I began chemotherapy in early July. The schedule consists of four to six cycles of two days each with four weeks off in between. We love my hematologist and his team: highly professional, caring, hands-on and fun at the same time. I feel I am in good hands.
Chemotherapy is no walk in the park, but the type of chemo I am having is quite tolerable and I have no hair loss. Every cycle feels different. In general, I’m “knocked out” for 8-10 days, followed by two “normal” weeks before the next round begins. As I’m writing this, cycle four will start next week.
When looking at past months, key elements of my (and our) well-being have been communication, listening, and humor.
When it comes to talking about cancer, people bring their own concerns and fears to the table. While I keep a low profile at work, we communicate very openly with family, friends, and acquaintances. When speaking to people about my condition we always make sure we communicate the “happy ending” first, i.e. “I’m getting treatment and will be fine.” This way we don’t send people (and ourselves) into drama.
Listening is equally important. People respond to the news with their own experiences and concerns. The more I listen to them, the more they feel at ease. I had some of the most inspiring and intimate conversations with people sharing about their loss of a loved one or their own treatment, be it friends or co-patients at the treatment center. Sometimes it takes courage to listen because the topic is confronting for me, too. In those moments, I take a deep breath and honestly feel my own discomfort. As I do this, I feel as if I’m truly meeting myself as well as the person who is in front of me.
Lutz supports me in every possible way, from creating a beautiful shady spot on our deck to sit and relax, to preparing yummy food options when my nausea strikes. But most of all, he makes me laugh. Some days, when I feel terrible and share with him what’s going on in my mind or my body, he listens. That alone feels really good. Usually, he then comes up with something totally unexpected that makes us both laugh (and distracts me). Humor helps. And again, listening to him is very important: sometimes he can tell I need a break long before I do.
I consider Waldenström to be my “Swedish relatives.” You can’t choose your relatives. I didn’t even know I had them; they showed up unexpectedly. They will continue to be part of my life, even though we expect them to “move out” after this extended visit and drop in only occasionally in the future.
And while this condition and these “relatives” came as a surprise, they have also brought rich moments and unexpectedly intimate encounters I’m very grateful for.