When I asked my oncologist how I could get on the good side of the recurrence statistics, here is what she told me:
“You will hear a lot of theories. But there are two things that we do know influence recurrence. You need to do aerobic exercise a half an hour a day and keep to your lowest healthy body weight.”
I have been a compliant patient all along. Being a compliant survivor is a little more challenging. Although they often seemed to stretch on forever, my treatments were time-limited. I could figure out ways to keep going back for the chemo that made me feel so sick or the radiation that turned my skin raw, in part because I knew it would end.
I have generally kept fit in my adult life, but like most working moms, there have been times of greater attention to self-care and times where that gets fairly neglected.
With my doctor’s words, I felt I could no longer weave in and out of an exercise regimen. It had to become like brushing and flossing, something that feels wrong to skip.
I know myself. I needed to structure this exercise task, give myself an exciting goal, cut the Rest-Of-My-Life time frame into a more conceivable chunk.
So I signed up for the New York City Half Marathon. I raised money for an organization I respect, the I’m Too Young for This Cancer Foundation. It felt like a deliberate push back to the disease that has robbed me of so much.
I got my training program lined up and wrote it in my calendar. It was non-negotiable. I had to figure out how to do my runs, whether there was rain, sleet, or a feverish child to tend to.
I got my Twitter pals involved. On days where I needed motivation (which was fairly often), I would dedicate my runs to specific friends who had shown me support or to groups of people I was thinking of. I dedicated long runs to the Newly Diagnosed, to Those Whose Suffering Cannot Be Touched by love or medicine.
These are some of my awesome cheerleaders on Twitter.
The dedications would elicit cheers from my tweeps. That helped me stay more focused and determined. I even got training tips from fellow runners.
I loved training because my increasing fitness was so concrete. Since I had my last procedure at the end of December, in early January, I was unable to complete a mile without stopping to walk. As I trained, I could run 1 mile. Then 2. Then 5. I even got some speed back. I noticed my sleep and concentration improving in other parts of my life. Running felt like a direct route to my recovery.
Yesterday was a lovely, chilly day in New York City. My childhood friend and I lined up at the starting corral and chatted for the better part of 13.1 miles. We went through Central Park, Times Square, and down along the Hudson River. New York City has been a backdrop for certain phases of my treatment. I came here for my second opinion when I was newly diagnosed. I came with my family to visit friends after my chemo was complete. And now here I was, with my re-emerging health, running through this iconic landscape. I felt strong the whole way and sprinted across the finish line.
Thank you so much to all of you who supported me and helped me reach this milestone. I really feel like I am gaining an important part of my life back.
Tags: advocacy, attitude, coping, courage, exercise, gratitude, recovery, social media, survivorship
Posted in Survivorship, Wellness | 38 Comments »
A few years ago, I was teaching a graduate seminar on classroom discourse. We read papers about different features of talk in schools that researchers have found to influence teaching and learning.
One of my students, an accomplished teacher, said to me, “What about listening? Does anybody write about listening?”
I paused and thought. I came up with a couple of things for her to read, but there was no identifiable literature on listening.
From her experience as a teacher, she knew that listening well was a fundamental part of what she did: knowing enough about how children make sense of an idea to interpret their initial, faltering attempts to wrap their head around it; finding a sparkling thought in the middle of what looked to an untrained eye like a dull lump of coal.
It’s hard to study listening. We can’t see it directly. It shows up indirectly in our interactions.
I have thought a lot about this empirical dilemma since that conversation with my student. Because listening is so subjective, in some ways, a first-person account is a reasonable approach to its study.
Inadvertently, today filled me with thoughts about listening. I will tell the story of my day of being heard and ignored at a time when the emotional stakes were high. My observations are inserted in my story in italics.
My husband and I switched our patient/caregiver roles. He had two surgeries for what I have come to think of as collateral damage to his body from my Year from Hell.
During that time, as he kept up his job, took care of our three young children and carried me through my cancer treatment, he eventually succumbed to four or five (we lost count) bouts of strep throat. The chronic tonsillitis required a tonsillectomy (surgery #1). For awhile, he found a physical outlet in a Thai boxing. It was great until a sparring partner, a yellow belt who knew just enough to be dangerous, broke his nose, leaving him with a severely deviated septum — ergo, surgery #2, a septorhinoplasty.
Surgeon #1 came in late for my husband’s consult. He discussed what he would be doing, what we could expect during the healing. It was all fine and good, a standard procedure that would only take a half an hour. He told me he would come to the waiting area and check in with me when he was finished with his part and Surgeon #2 was taking over.
“Great,” I said. “So I’ll wait to go out to lunch until I hear from you?”
“Okay,” he said.
I even repeated back our plan. He nodded and confirmed it.
Listening is a two-way process. I checked in with him to make sure I was heard.
There is a little status board in the surgical waiting room to give updates on the patients’ progress. My husband’s name appeared about 20 minutes later, letting me know that his surgery was under way.
Thirty minutes passed.
There was no change on the status board.
Surgeon #1 didn’t emerge.
I am generally a sensible person, so I did not let this panic me. Even though I am more vulnerable to imagining the worst given all that has happened in the past few years, I let reason continue to govern me.
Forty five minutes passed. My heart started pounding. There was no staff person in the waiting room.
Soon, sixty minutes passed. It became too much. I went through the swinging double doors to the nurses station.
I kept my cool as I approached. “Is everything alright? What’s going on?”
A nurse answered, sounding confused. “Yes, the first surgery went fine.”
“Where’s Surgeon 1? He was supposed to come out and see me.”
“He left. He had clinic.”
“But he told me he would come and check in with me. I’ve spent the past half hour waiting for an update from him. I told him I would go to lunch after he updated me.”
“I’m sorry. He must have forgotten.”
When somebody acts as if they have listened and then they don’t follow through,
it can be experienced as a disappointment.
If the stakes are high enough, it is a betrayal.
So the surgery continued. All was well so far. The next big hurdle would be the post-op, since my husband is one of the lucky 2% of people who gets severe nausea from anesthesia. We spent a good deal of time talking to the anesthesiologist about nausea control — something I sadly know more about than I had ever hoped to.
When someone answers your questions thoughtfully and thoroughly, it makes you feel listened to.
Surgeon #2 spoke with me after he finished his part of the procedure. Everything had gone well, faster than expected. My husband had stayed “strong and steady.” All that was good.
“How is his nausea?” I asked.
“We can’t tell yet. He’s just waking up.”
I waited for another hour before they would let me see him. I got all the discharge instructions.
“Hang on,” I had to tell the eager discharge nurse, who knew this information inside out and seemed impatient to get out and go home. “I need to take notes. I just finished cancer treatment and still have some short term memory issues.”
I could tell it was not her usual routine to communicate at my pace. She was kind and accommodating, but kept slipping back into her rat-a-tat-tat style.
When you are the main speaker, you need to listen to ensure that you are being heard.
You need to adjust your language, pace, and volume if you are getting cues to the contrary.
When they wheeled my husband into the waiting area, I could see that this was too hurried. He was pale and clammy. I can read his face like a book, and I knew he was suffering.
“I can’t take him in the car like this,” I said. “He is not well. I realize this is an outpatient procedure, but I don’t care what the protocol is. He can’t leave yet.”
Listening may involve more than the ears. It involves our eyes and our instincts.
The nurses brought him back to the recovery area. They brought him Fenurgan and let him rest to get it in his system. We had two failed attempts to leave before he finally made it all the way out the door.
During that hour, I said something somewhat apologetic to the nurse.
“Look, honey. That’s the job of friends and family. We are just meeting him for the first time. You know him. Everybody’s different, and we can’t always tell right off what he needs. You were right to speak up.”
Sometimes, people do not want to listen. We must insist on being heard.
And it sure is easier to speak up when somebody understands that.
Tags: changes, coping, doctor-patient interaction, essay, self-advocacy, straight talk, support, survivorship
Posted in Survivorship | 7 Comments »