57 E-mail: lessons, anniversaries, and memories

June 1, 2007 (almost 15 months after my diagnosis)

Listening
I have been rereading the book Kitchen Table Wisdom by Rachel Naomi Remen, M.D. and I find it is as effective a guide for helping me understand the emotions of cancer treatment and survival as Dr. Susan Love’s Breast Book helped me understand the science of breast cancer. Page 64 of Kitchen Table Wisdom contains the following quote.

Cancer had changed his life. He now lived so far beyond the usual, the normal, the ordinary in life, that he often felt alone. Many people did not want to hear about how it was with him, or couldn’t understand things that had never happened to them. Some were so upset by the pain of it all that he felt the need to protect them from it through his silence.

When my friend Brian Goldberg died suddenly the summer before my junior year of college, I coped in part by telling anyone who would listen what a kind and wonderful person he was. My roommate in the spring semester was so moved by my stories that she expressed regret she would never get to meet him. My boyfriend, who had been Brian’s best friend in high school, unkindly shut me down when I talked about Brian to him. He had no patience for my pain. He had too much pain of his own and preferred to bury rather than express it.

My husband, my soul mate, was a rock for me during the days of my cancer treatments. I could tell him in excruciating detail about the trauma and humiliation of what I was currently enduring and he would let me talk until I was done. Then I’d cry, he would hold me, and I would feel much better. Allowing my tearful confessions helped me heal and enabled me to face the next day with renewed courage. Once in a while he would share his own fears and I would feel honored. I didn’t always cry alone.

I think one thing you can do that is very important when someone you care about is coping with tragedy or a serious illness is to listen until they are finished talking about the part they feel ready to share. If they can bear the pain of the experience, and they trust you enough to share those memories, then you should bear the pain of hearing it described. Don’t shut them down with platitudes about how things will be better in the end. Acknowledge what they’re going through right now. Agree that it’s awful and unfair. If you’ve been through the same thing then it is okay to say, “I understand how you feel.” If you haven’t been through the same thing, then it is better to stick with, “I cannot imagine how difficult this must be for you, but know that I’m here for you and I’ll do whatever I can to help.”

Listening to people talk without brushing away their pain is challenging to do, but that action expresses your love and concern more eloquently than any words of comfort.

I learned eventually that not everyone cared to listen to my Brian stories, and I eventually stopped telling them. I applied that lesson of caution when talking about my cancer experiences, trying to balance my need to heal by way of sharing with not wanting to bore my audiences. I scanned people’s faces for the telltale glazed eyes and I quickly wrapped up whatever I was saying if I thought their attention wandered at all. I think I did a good job last year of distinguishing people who asked, “How are you doing?” out of the illusion of politeness from the people who asked it because they really wanted to know.

I suppose that is why support groups and social groups like the Pink Ribbon Cowgirls play an important role. The common thread of battling the same disease makes it interesting to hear one another’s war stories. I experienced this recently at a girls night out gathering of Cowgirls. We sat around a dinner table and shared stories from our treatment days. I told about events I had previously recorded in my writings. I thought that my complications like the blood clots in my arm and my hospital-worthy infections during chemo were standard treatment adventures. I found myself the temporary center of attention of other women who had been through their own unique treatment hell, and yet they were riveted to my stories. I’ve been in the group a year and thought I was old news, but these were new people and I realized none of us knew much about the specifics the others had endured. It healed something in me to have them as interested in my stories as I am in theirs.

While I’ve made it through my first year of survivorship and most people just want to hear how I’m now healthy and doing fine, it is nice to confess to certain people that now and then everything is not fine. Now and then something reminds me that just a scant year ago I was in the middle of something dramatic, painful, difficult, and grossly unfair. I’ll spend a day feeling spooked and then I’m okay again. I think it’s okay to be afraid of recurrence and metastasis as long as I don’t live in deep constant fear.

The various anniversaries I’ve reached this year surprise me each time with the memories they bring up.

Memorial Day
Case in point, my 14-month-old son was sick over Memorial Day weekend this year. We dosed him with Motrin and comforted him in the middle of the night and I reflected how grateful I was to be at home with a sick child and not at South Austin Hospital. A year ago on Memorial Day weekend I spent a night in the hospital because I had caught an infection and with my chemotherapy-depressed immune system my 102 degree fever had become dangerous. I couldn’t stop throwing up and my fever was creeping higher.

I will never forgive the nonchalant attitude of the hospital staff who took their sweet time preparing my room while I waited in the hall, slouched in a wheelchair because I was too weak and nauseous to sit upright. They joked with each other at the nurses’ station and ignored us while my husband worried that I was going to die. The vomit in the tray I held as I sat in that wheelchair was green and smelled nasty. Where does green stuff come from a body that lost the movie popcorn and soda hours ago and hasn’t held anything down since? My oncologist was my champion that day as he came in person to the hospital to check on me. A lazy worker said the room was ready except they were out of clean sheets for the bed. She wanted to wait for Housekeeping to bring fresh sheets before anyone made my bed, but my doctor pressured her to go one floor down and get the sheets herself. Meanwhile I held my tray of nasty green stuff wanting nothing more than to lay down anywhere. The floor would do. It was the beginning of a long night of nobody listening to me or properly caring for me. I was helpless to stand up for myself the way I usually do and once my doctor and husband left I felt vulnerable and frustrated as well as sick.

I remember that experience and inwardly shudder. It’s ancient history now, but it was a traumatic event at the time and it left scars on both me and my husband. He lay awake all night that night grieving the possibility of losing me. We considered later that my being in that hospital on that night was probably a risk to my health. Fortunately for me at the time I didn’t think things were that serious. I was awake much of the night because joint pain and a room set at 80 degrees made it tough to sleep. The fluids from the IV helped to restore what fluid and nutrients I had lost and maybe there were antibiotics involved. Nobody seemed to know anything to give me a straight answer, but by morning I was well enough to go home and I refuse to return there ever again.

Guy’s Birthday
For another memory of last year’s trauma, Guy’s birthday on March 29th last year was Kelric’s original due date. As exciting as it was to have Kelric born on March 13th which is my favorite great aunt’s birthday, we were sad that he had to be delivered early for my sake. Guy had looked forward to sharing a birthday with his son during the whole pregnancy and the last minute change of plans was a loss he spoke of several times to me.

We celebrated his birthday last year with a dinner out. My mom watched Kelric and I ate an entrée with feta cheese. Feta is on the list of foods to avoid for people in treatment because the natural bacteria it contains can challenge a compromised immune system. Guy’s birthday last year was the night before my first chemotherapy infusion so my feta cheese felt like the last meal of the condemned. This year we ate out with Kelric and I was so proud of myself because I realized his screaming “Me! Me!” meant he wanted one of the balloons we passed on the way in. Kelric got a balloon and was happy. I bought Guy a chocolate silk pie and we went home exhausted by our son but happy about the pie.

My Birthday
My birthday on May 9th last year fell two days before another round of chemo. I had lost my hair by then, knew that chemo made me miserably nauseous, and grew more anxious about the next treatment as it got closer. This year I had lunch with my staff and dinner with friends. This year was wonderful. I expressed gratitude to my friends that I had made it to age thirty-six. I grew melancholy when I wondered if I will live to see my son turn ten. Ten! Let’s not stretch for 20 or 30 or 40 yet. One decade at a time here…

That shouldn’t be a fear for any parent whether she will live that long or not, but I’m only one year out from a diagnosis of a disease that kills around 40,000 people in America each year. I still have the first critical five years after diagnosis to get through before I can relax a little. One down; four to go… If I don’t have a recurrence in five years it doesn’t mean I’m cured, but statistically it will mean I’m a lot less likely to battle breast cancer again.

My friends and husband quickly reminded me that treatment and early detection are so good these days that breast cancer is one of the more survivable diseases out there. That made me feel better. The day after my birthday I was no longer melancholy at all. I was back to my busy life and cancer fears were once again pushed to the dark corners where they belong.

Talking to people who listen and who remind you of the good things keeps the mind working towards the direction of healing and away from the depression of stagnation. I suppose that statement applies in broader ways than cancer treatment-based trauma. It seems I’m learning new lessons all the time. Sometimes I listen well enough to remember them.

Angela

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