Those of you who have read my blog know that my first cousin, Laura, was diagnosed with HER2+ breast cancer in 2012—and that just a year and a half later, she felt a lump in her neck, which led to the devastating news that she had metastatic recurrence to her lungs, liver, and multiple lymph nodes. She immediately began treatment again, this time for metastatic breast cancer (MBC).
Fortunately, she responded incredibly well to her combined targeted HER2 treatment with Herceptin and a newly approved HER2 targeted agent, Perjeta, and was found to have no evidence of disease (“NED”) since October 2014. But as she explained in her blog, in the spring of 2015: “I started feeling a tiny bit off when doing flip turns at the pool. That’s all. And my eyes felt bleary from what I assumed was my two day per week job in front of a computer where, with my reading glasses on, I had to be very close to the screen. In my former life, I would have chalked it up to [being] tired or hungry. In my occupation as cancer patient, I knew to request a brain MRI.” And it was then that she learned her cancer had metastasized to her brain, with 18 lesions that were too poorly differentiated for localized gamma knife. She therefore underwent whole brain radiation and, later, following the development of more brain lesions, gamma knife procedures. In March of this year, Laura wrote the following about her most recent scans: “’My body has no visible cancer right now. Yea! My brain has five tiny lesions that aren’t a big enough deal right now to treat. Yea…..? This is a ‘great report’ from both of my brilliant docs. Grace is my interior screaming, ‘What Kind of Fuckery is This?*’ while trying to be content with walking around with five cancerous lesions, however small and asymptomatic.” (*As Laura explained, “It’s what Amy Winehouse sang so gorgeously in ‘Me and Mr. Jones.’ ‘WHAT KIND OF FUCKERY IS THIS?’ I love curses I’ve never heard before, especially when they fit a situation so well.”)
Also in March, Laura’s husband, Jon, wrote a deeply moving post on his Facebook page that brought me to tears. In the days that followed, my thoughts kept returning to his words, and it struck me that far too many people have never heard such thoughts from the loved ones of women or men living with MBC. I therefore contacted Jon to ask whether he would be willing for me to share his post on my blog, explaining that I had two reasons for my request. First, there was no doubt that his words would deeply resonate with so many. And second—and so importantly—his post could go far in educating others who have far too many misconceptions about MBC. Jon graciously gave me his permission, and so, without further ado, I’m honored to share the following with you today.
“My Thoughts on Cancer”
“Every now and then, I try to write something about what it’s like with my wife having metastatic breast cancer (MBC). Laura has been living with metastatic cancer for just over 33 months, which happens to be the median life expectancy for someone with MBC. This statistic could be a little skewed, since there are a couple of new [targeted] drugs (Herceptin and Perjeta) that have become available over the past two to four years that should increase life expectancy for those with HER2 positive breast cancer. She is [also] on chemotherapy and will continue on chemo of one type or another for the rest of her life.
“Right now, Laura has five brain mets (tumors) she is just walking around with. They are very small, so her radiation oncologist just wants to wait before doing a procedure. But this is me telling facts and not feelings.
“Ever looming is death. Metastatic cancer is the cancer that kills. So death is the first thing that is always lurking. Every three months, she has scans, and we see if there is cancer in the body or in the brain. Her cancer likes to invade her brain.
“But beside the big thing (death) is the human trait of planning ahead. Thinking of the future. Our future is lived in three month scan cycles. But at the same time, I think about what is happening in ten years when I’m in my early 60s.
“My birthday is next week. I will turn 53. My Dad died when he was 52. I have been afraid of 52 for a long time. Laura made it past 52, and it looks like I will, too. But it brings up lots of emotions–especially the long-lasting void left for my wife and kids, who never met my real Dad.
“What is it like living with metastatic cancer (from a caregiver/observer view)? Day to day can be good, generally is good. Dog walks and amazing dinners. Laura is cooking more than ever before in our marriage, and the food is amazing. But there is a knot in my stomach, a catch in my throat, when someone talks of retirement or the future. I wonder if I should be paying attention when people talk about swiping left or right on Tinder or Teaser (?) or whatever the dating app of choice is. Will I be looking for someone to retire with in 15 years, or will Laura be there by my side? Like everything in life, I just don’t know, but my mind wanders to the uncertain future late at night or early in the morning.
“I also feel guilty about wondering about my future when Laura is doing well while having cancer in her brain. There are interesting and potentially life-saving drugs out there in trials that could make all the difference in the near future.
“Am I a bad person for making jokes that she can’t remember something? She does not have nearly the cognitive abilities that she had five years ago. Brain radiation will do that, as well as years of chemotherapy. Her eyesight changes every few months, and she needs new glasses lenses, but I taunt her for not being able to see … I know, I suck and should be better, but I can’t help making jokes about what is hard.
“We are thinking and dreaming of building out on our Knappa land above Big Creek. It is great to think about moving out there when I retire, but what does that really mean–am I with Lu or alone?
“If you have read this far, please do not worry about me. I am the same ebullient, happy-go-lucky fellow you know. At times, I think too much, just like my lovely wife.”
Thank you, Laura and Jon, for allowing me to share this post. I recalled that in an interview for the blog “Voices of Metastatic Breast Cancer,” when Laura was asked to share her favorite poem or song, she responded by saying that The Beatles ‘Ob-la-di, Ob-la-da’ really resonated with her in this phase of her life, as did Lucille Clifton’s poem, ‘Blessing the Boats.’” I’m therefore sharing the below as a way of expressing my gratitude to you both.
blessing the boats
BY LUCILLE CLIFTON
(at St. Mary’s)
may the tide
that is entering even now
the lip of our understanding
carry you out
beyond the face of fear
may you kiss
the wind then turn from it
certain that it will
love your back may you
open your eyes to water
water waving forever
and may you in your innocence
sail through this to that
Lucille Clifton, “blessing the boats” from Blessing the Boats: New and Selected Poems 1988-2000. Copyright © 2000 by Lucille Clifton. Reprinted by permission of BOA Editions, Ltd., http://www.boaeditions.org.
Source: Blessing the Boats: New and Selected Poems 1988-2000 (BOA Editions Ltd., 2000)