In October 2008 I had my first mammogram. The next day, I received a call. "There is an asymmetry on your pictures. We need to call you back for another mammogram. This is very common and does not mean that there is necessarily anything wrong . . ."
I was 46. My dear mother was 47 when she was diagnosed with breast cancer and died at 50 when I was 18. This makes me high risk. Even higher because my mother was so young.
The reassuring patter that the radiology technician spouted ad nauseam, three times in the course of this one initial call, was irritating after the first reiteration. Lets get on with it! I need facts ASAP! I thought to myself. I hate thrillers. (And, in order not to keep you in suspense: I will tell you now that my second pictures were beautifully clear. I am fine.)
The call came late on a Friday afternoon. They set me up for their earliest call-back appointment, the next Thursday. When I got off the phone, Walter, my husband, convinced me that it was worth pushing for an earlier slot to avoid a hellish week of worry. I called the hospital. No go. Walter, my knight in shining armor, then went to bat for me and called our family physician; he told Walter that the extra couple of days would not affect my health, even if the news was bad. Walter explained that, at this point, it was my mental health that concerned him. An hour later, our doctor called back and let us know that I had an appointment for Monday at noon. (Many thanks, Dr. Jensen!)
For a weekend we waited, and my mind did a brief dance with death.
I did not give myself great odds. My mother lived two years from diagnosis to death, and she fought the fight: radical mastectomy, chemo, radiation, the works. The process was all too clear to me. So how was I going to deal with this?
Okay, two years; I would make the most of them.
Did I want to change anything I was doing? No. In fact, in the past year I had come to feel that I finally found my calling: to be a partner, a mother, a homeschooling parent, and a pig farmer. What a combination! Who’d have thought it. It is a life that fits me well. My soul is content. I would only finetune the balance of things a bit. Maybe be more regular about getting to contra dances. Be sure to keep up doing music with the kids. I have learned to focus not on teaching them to play music, but on passing on the coolest songs I know; learning to play an instrument has been a happy side effect. I would definitely be attending Friends meeting more regularly. I love my meeting, but I often put life happenings in front of attending. This particular "life happening" would certainly make spiritual
On the one hand, if I were only to live 50 years, like my mother, I couldn’t complain. I often refer to myself as the lucky lady. I have a partner who loves me intensely, has a nuclear furnace for a body (to balance my icicle skin), and has spent 20 years holding my hand as he broke through my plethora of rigid boxes.
Before marrying Walter, I thought I was an open-minded, accepting sort of soul. Ha! But then I joined ranks with a renaissance man, who is also a rather eccentric genius with a quirky sense of humor and a passion for self-sufficiency, efficiency, and beauty. Watch out! I had to learn to bite my tongue when I was tempted to say "impossible," "we can’t," "we shouldn’t," or simply, "Walter!" (in my best "How could you?" tone). Walter makes the impossible happen.
My children are three of the best human beings I’ve ever met. My close friends are few, but their kindness, love, and wisdom could fill a black hole. And I live on one of the beautiful spots on Earth. There are more spectacular places, but this land can certainly hold its own. I stop several times a day in the midst of outdoor tasks just to take it in. I can’t complain.
On the other hand, the thought of not being there for my family was intensely painful. How would I handle this dying thing? My mother spoke of the treatment process being worse than the disease. How could I be there for my family when I wasn’t there? How could I assure they would be loved?
I thought of my mother’s illness and death. I had an idyllic childhood with loving parents. But years after my mother died, I realized that the lack of discussion about what was happening during her illness was not how I would want to handle the situation. When my parents told me that Mom had cancer, the next words out of their mouths were, "Don’t talk to anyone about this." My mother was in the midst of writing a grant for the geriatric psychiatry program that she directed. The fear was that the grant might be denied if it were known that she had cancer. My folks also explained that their European culture was one of "don’t talk about bad news." Maybe that’s how their extended families survived the Holocaust. I don’t know. But there it was. I was not to tell friends, teachers, anyone. And I didn’t, for those last two years of high school.
There were some conversations with my mother. We talked a lot about euthanasia in general. She once asked me how I would feel if she got to the point where she wanted to end her life. And just before I left for college, she told me she had switched to only palliative care. She said she regretted she would not see me graduate from college, or get to meet my kids. That was the only reference made to her death. We had this conversation while walking together to her work. She certainly did not seem to be at death’s door, so this was my only indication of how advanced the cancer had become.
I wanted to encourage my kids to talk and ask questions. Walter and I always talk about everything, so that was never a question in my mind. I wanted to tell Will, Ben, and Hope what I was thinking and feeling, so they would know it was okay for them to do the same, and okay to tell whomever they felt inclined to talk with.
And whom would I talk to? Should I tell the world or keep it close to my chest? On the one hand, I hate secrecy. I believe that all the cluttered emotional closets that people keep shut tight are bad news. If people are open about their experiences and feelings it makes the world better. People empathize, gain understanding, and learn from one another. Name the evil and it loses some of its power, but keep it hidden and it festers, grows, gains strength, and becomes an overwhelming darkness. People don’t know how to deal with illness, death, and dying because it is all so hush-hush in this culture. But if I tell the world, that affects Walter and the kids, too. Then they have to deal with people broaching the subject and being strange. And maybe they don’t want to deal with that. For that matter, maybe I don’t either.
Speaking of the world knowing, there was going to be hair loss. No wig for me, thank you. I know what to put on my Christmas list, I thought: head scarves. (It turns out that Walter was thinking we could make a nice hat for me. Cool.)
When thinking of gifts for my loved ones, I remember the things I have that are connected to my mother and are special to me. I have some ceramic pieces that she made including a bust of me that she did when I was in high school, a lion mug she gave me on her last Christmas, a checkbook cover she made in needlepoint, and a photo of her.
I don’t have a photo of the two of us together, but her photo does have a special story. It was sent to us by one of her patients after she died. This patient had apparently adored my mother enough to ask her one day, after an appointment, if she would pose for a photograph, and sheepishly she agreed. I love the thought that as she mugged for this photo she was feeling tickled, honored, and a little awkward at the show of admiration from someone under her care.
Before chemo starts, I would be sure to get nice photos of me with each member of my family, and nearby friends. To have each of my loved ones receive a nice photo of them and me after my death seems a bit egocentric, but I hope it’s not. For my kids, I would leave boxes of gifts to be opened through the years. (They could actually be opened anytime, whenever they would be most helpful.) For their 18th birthday, I would give Life Lessons by Elisabeth Kubler-Ross and David Kessler; when expecting their first born, How to Talk So Your Kids Will Listen and Listen So Kids Will Talk by Adele Faber and Elaine Mazlish, and What to Expect When You Are Expecting by Heidi Murkoff and Sharon Mazel. After their little one is born, Soul’s Code by James Hillman. I thought about God Is a Verb by David A. Cooper, but I live with a gaggle of atheists, so maybe they would just find that one in my library.
My mind wanders with thoughts and remembrances on Mom’s birthday and the date of her death. It would seem that establishing a positive activity on such anniversaries might be a good thing. Otherwise, it is hard for a person to know how to deal with the day. For my birthdays, I would ask my children to buy themselves a new comic book or have an ice cream—two of my favorite things. I don’t know if this is egocentric or helpful. I would hope this might be a comforting tradition, and I like the idea.
I want my kids to know my answer to that eternal question, "What is life all about, anyway?"—love. Not to be loved, because you can’t control what comes to you, but to be loving. It is not always clear how to do that. This is where Friends meeting comes in for me. I came to Quakers as an adult and want to let my kids find their own way spiritually. I can’t know what will work for them. Being Quaker is my thing, not my family’s. At meeting for worship I find guidance on how to deal with life’s challenges in a loving way. I would like to write down for them the experiences from meeting that most resonated with me—that spoke to my condition.
I always regret that I don’t know more stories about my mother: about her childhood, growing up, school, relationships, everything. My then fiveyear- old daughter, Hope, has this wonderful habit of asking for stories. "Tell me a story about me," she says, or about Ben or Will when they were little, or about my brother and me when we were children. Hope picks the topic, and away we go. I often have to rack my brain for new events, and she always asks for more. Maybe my family already knows my stories, even a bit too well.
So, what do I want to tell Will, Ben, and Hope? What to say in my special letter to each? This, I’m sure, is something that would evolve. But some initial thoughts: There is no right or wrong way to grieve, or to feel. A wise friend once told me, Don’t be afraid of the tears. And that single sentence carried me through grieving for my miscarriage. I would add, Don’t be afraid of the laughter. (At the reception after my mother’s funeral, people were asking if there was anything they could bring. Well, we had plenty of food, but would the toilet paper hold out? Great giggles. And along with talking and eating, people enjoyed themselves as they polished the piano and cleaned up the small piano room, recently under construction.)
Or you may feel nothing. That’s okay, too. Don’t worry about it.
As it turns out, I did not really go through the bulk of grieving for the loss of my mother until six years after her death, when I got myself into counseling to deal with job-related stress, and out it came. And I am not done, but time does mellow the intensity. Be kind and forgiving to yourself and others.
And what to do for Walter? I felt like Hawkeye of M*A*S*H, in the episode where he is working at the front line. During a lull in the arrival of wounded soldiers, thundering artillery triggers an inspiration for him to write his will. He proceeds to describe what he wants to leave for each of his friends and loved ones. But he is stuck on BJ, his best friend, and just can’t think of anything special enough. I had the same quandary when thinking of Walter. Well, I know one thing I would need to do for sure: find him a new wife. In the midst of the depression he’ll be suffering, I can’t count on him doing it for himself. I want him to have a partner. It’s a good thing I’ve never been the jealous type. Now, where am I going to find him a wife? Contra dances are a good place to look—that’s where we met. Maybe someone who reads his blog. Now that would be an interesting post! It needs to be someone who is willing to live outside the box, and work hard, who would want to be with partner and kids 24/7. And have an interest in homeschooling. Music and crafts would help. Someone who would want to be a pig farmer. (Gotta be honest, folks, this includes dealing with dead animals, and that part ain’t pretty.) Love the countryside (city mice need not apply). Do construction. Contra dancers are a plus— this could be tough to find.
Fortunately, I don’t have cancer. I came home from the doctor and insisted on a big hug from each child, did a little jig in the kitchen as my rather amused kids looked on, and then snagged another hug from each.
Ben said, "I didn’t know you had a spot that was being re-checked." This brings up another significant point. We had told our son Will about the recheck, but not Ben or Hope. This was not because Will is older. Will has always wanted to be told about happenings. When I had a miscarriage, before Hope was born, a nurse gently admonished me for having told my 11- and 6-year-olds of my pregnancy before the end of the higher-risk first term. So I went home and asked Will, "Next time, do you want me to wait before telling you of my pregnancy until the greater danger has past?" "No!" was his emphatic response, "Did you see me react badly when you told me of the miscarriage?" (No.) "I hate not knowing what is going on!"
So we always let Will know. Ben, on the other hand, is like his mother and will sometimes be absorbed with worry. We avoid having Ben waste his worry, if possible and try to tell him what he needs to know when he needs to know it. Each of them is different, and their souls ask for different methods of handling. There is no one right way.
Feeling so blessed in my life, I can’t complain that it is not longer. But I would deeply regret not knowing my kids’ kids. And the thought that really ripped my heart to tears was not being able to assure that each of my family was loved, always. That’s all I wanted to do and I couldn’t do that dead. Or at least I don’t know if I can do that from whatever is—or isn’t—beyond. That was the sharpest point of my pain. I wanted to live for the sole purpose of surrounding them with love.
I feel sort of silly. I mean, here I am filling pages with one weekend of thoughts. What about all the people who had bad news from their re-tests? The ones who go on to deal with the reality of what was only going on in my head. I can’t fathom their experience. Bless them.
An earlier edition of this article with photographs appeared on the Jeffries family’s Sugar Mountain Farm blog at http://SugarMtnFarm.com/blog, ©2009 Holly B. Jeffries. Photos ©2009 Walter V. Jeffries.