Posts Tagged ‘awkwardness’
04.04.2011
My chemobrain seems to be improving in most areas of my life. I can concentrate better. I recall details more accurately. I even keep some ideas in my short-term memory. Each time this happens, I notice. It’s a fist-pumping triumph.
However, I continue to struggle recalling faces. I led a seminar a few months back. A student who I have known for over a year attended. She had been out on maternity leave, so there had been some break in our contact. My brain could not put her name and face together.
It felt painfully obvious to me. When I teach, I tend to use people’s names to facilitate conversation. I had to look at her and say “you” a lot, internally distressed at not pulling up her name in my brain.
Afterwards, I checked with another student, “Was that Liz?” I was assured that it was, and I went up to Liz and explained my embarrassment at blanking on her name.
If you knew me better, you would know how completely uncharacteristic this is. At my 20th high school reunion, the organizer forgot to get name tags. I offered my Facial Recognition Services to my distressed classmates. I stood in the corner with a number of people, discreetly helping them link high school names with middle aged faces. I had nearly perfect recall of the name-face link for people I hadn’t seen in years.
So this new handicap is a big change for me. I am trying to figure it out. One strategy I’ve developed is to make a deliberate study of new faces, talking aloud their distinctive qualities and then saying the names that goes with them.
Without that, my recognition is a bit of a crapshoot.
The worst experience I’ve had so far with prosopagnosia happened a few weeks ago at the Guggenheim.
After a lovely afternoon of modern art, I went to pick up my coat and bag. There was a long line at the bag check, and I was preoccupied with the subway map. I absentmindedly handed my tag to one of the men working behind the counter, and after a minute or two, looked up again.
“Did you hand me your tag?” he asked.
“Uh, yeah. I think so.”
“Are you sure it was me?”
“I’m pretty sure,” I answered, the dreaded doubt seeping in.
As we muddled around in this confusion, the actual man I handed the tag to came forth with my bag. I looked from the first man to the second. They were both tall African American men with shaved bald heads, but their faces were quite distinct. The first had a brush mustache, and the second had thick round glasses.
“Oops,” I said, realizing my mistake. “That’s just terrible.”
The first man looked pained and answered me pointedly. “Yeah, you’re right. That is terrible.”
He took the tag of the next person in line, and I rushed off with my bag.
I felt awful knowing that our agreement about my mistake being terrible came out of different understandings of my confusion.
I was ashamed that I couldn’t see the mustache versus glasses. He assumed I was a racist.
I wished I could tell him about blanking when Liz returned from maternity leave. Or chemobrain. Or any number of embarrassing things that would ease his judgment of me.
But the moment was gone.
Tags: appearance, awkwardness, chemobrain, daily life, healthy people, survivorship
Posted in Survivorship | 8 Comments »
08.17.2010
The landscape of my friendships has shifted during this past year. Don’t get me wrong. I feel unbelievably fortunate. On the whole, my friends have come through for me in every way imaginable. Some of my friendships have deepened, as people have come to know me differently, have reached out to me in new ways. At the same time, as is inevitable in a crisis, there have been a few surprises in the other direction as well.
I love all the cards my friends have sent me. I look at them when I feel sad.
Yesterday, the New York Times published an essay about how others respond to you when you are in crisis. We know quite a bit about how people respond to their own crises. Ideas like resilience, resourcefulness, support and social networks get tossed around when we hear about what helps people make it through. It turns out, however, that we know very little about how people respond when those near them are in distress.
I have thought a lot about this because my circumstances have put me in an extended state of neediness. Between losing my step-brother and my own diagnosis, I have become a person who undeniably relies on others. I also look at others whose crises have hit close to home, like my friend’s recent death. Many of the tears I shed at his memorial service came out of the horror of realizing how close my family and I were to sharing his family’s fate.
The first thing I noticed when I shared my news was that friends who, as children or young adults, had lost a parent to cancer took the longest to respond. They all did eventually, always apologizing for the delay. Perhaps it’s my social scientist self, but I was so struck by the consistency of this phenomenon, it was easy to forgive. There was something much greater than flakiness at play. The emotional depths of the notes I eventually received confirmed that these friends were not being nonchalant. In fact, compared to so many people, they knew too well how serious my situation was.
One of these friends has continued to struggle in connecting to me through my treatment. At first, I was disappointed. This same friend stood out for the opposite reason during my brother’s time with cancer. She was literally there for me from the beginning to the end, holding my hand, accepting my grief.
I was with her during the hellish week of his diagnosis. He had been hospitalized for unclear reasons, and each day brought new test results signaling increasingly dire news. I kept ending up on the short end of all the bargains I was making with the Universe. Please just let it be a tropical disease. No? Then please let it be a treatable cancer.
After a few days of falling through this hellmouth, I awoke out of a dream sobbing. My friend was there, ready to delay her morning plans, to listen to my fears and offer her support. Later that week, she literally picked me up off the floor and got me to eat when the gravity of his disease became an inescapable truth, and I felt the world collapsing around me. As his treatment went on, I knew I could call her any time of day or night. In the end, she traveled a long distance to be there for me, to hold my hand, watch my children, do whatever was needed, so I could cry at his memorial service.
In between his death and my diagnosis, she confided in me that her mother’s death from cancer suggested she could carry the BRCA gene, a marker that would put her at higher risk for ovarian and breast cancer. She had decided not to have testing, because a positive result would open a course of medical decision making she did not want to endure. Even though her risk for breast cancer would increase dramatically from 12% to 60%, it would still be a less than certain outcome.
This wonderful friend, in a certain way, has kept her distance from me during my treatment. It’s not that she has ignored me or tried to sweep me under the carpet. Not at all. She sent me a really cute hat during chemo. She bought one of my t-shirts. She has supported me in many, many ways. But something has shifted. A subtle distance settled between us.
I thought of how consistent the silence was from all friends who had lost a parent to cancer. I recalled our conversation about her own cancer fears. I recognize how many similarities we have in our lives. I put the pieces together for myself and figured out that my situation spooks her deeply.
A couple of months back, she called to apologize.
“I’ve been meaning to tell you something. I don’t know how to say this.” Her voice filled with emotion. “I’m sorry. It’s just so hard for me…”
“I know,” I said as gently as I could. “I get it. You don’t have to explain.”
And it’s true. I do get it. As much as the landscape of my life has shifted, I know she will be my friend on the other side of all of this.
Maybe there are certain parts of our journey that even our dearest friends can’t tolerate. The fear, of course, is that maybe our crisis will become too deep for any of our loved ones to endure with us.
Sometimes, other people’s suffering just cuts a little too close to our own worst fears. I think it’s human. And I think, sometimes, it’s forgivable.
Tags: awkwardness, changes, coping, daily life, essay, grief, healthy people, identity loss, mental health, parenting, support
Posted in Treatment, Wellness | 2 Comments »
07.01.2010
Maybe it’s because I had breast cancer. Maybe it’s because my brother, at age 35, had prostate cancer and was treated with Lupron, a drug that shut down all of his male hormones.
I thought it was obvious that cancer patients have to contend with a serious crimp in their sex lives, during and after treatment. But if it’s a subject that is even taboo in France, you know we still have a long way to go toward talking about sex and cancer.
This is a post about sex and treatment. Not about relationships, not about intimacy. I hope that it helps others out there find some resources to help them with this vital issue.
When I was first in chemo, I tried to find information on the subject. It was hard to come by. I started talking to other patients and survivors whom I met through social networks. I culled the few articles I could find and went into a few chatrooms on the topic. I spoke with my oncologist. This post summarizes what I have learned as I sought information on this important and under-discussed topic.
Cancer threatens our identities in many ways. Treatment often alters our physical appearance. We are confronted with our mortality. For many people, sexuality equals vitality. To be robbed of our hair and our body parts is hard enough. But to be granted early menopause or be rendered impotent hurts in a different way.
From my conversations and reading, patients’ libidos are affected differently –– and for different durations –– depending on the kind of cancer they have and how it is treated.
Some cancer treatments shut down sexual organs and functioning for the long term. Women with cervical cancer, for instance, might have several inches of their cervix removed as a part of treatment. Sometimes, radiation in the cervix can leave adhesions that close the vaginal walls, making intercourse painful or impossible. Men with prostate cancer risk permanent erectile dysfunction in the wake of a prostatectomy. These are serious side effects and require special physical therapy or medications. Cure magazine wrote the best article I have found on the subject, although talking to patients, I find that there is still a lot that is left out.
Other cancers effect secondary sexual organs, such as breasts or testicles, leaving patients with altered body images and transformed (or deleted) erogenous zones. The basic sex act is still possible, but patients’ desires may need to be adapted to their altered pleasure zones. While there are sometimes cosmetic fixes for these lost or changed organs, they are often imperfect, leaving people with little tono sensation.
For example, women with breast cancer are sometimes faced with a choice about having single or double mastectomies. Deciding whether to remove a second, unaffected breast forces women to balance cosmetic, medical, and sexual considerations. The latter is often not discussed with women making this choice. Interestingly, I have not met any men with testicular cancer who have considered prophylactic removal of their second testicle. Maybe I have just talked to the wrong men.
Having body parts removed or altered leads to body image concerns for both men and women. The sex therapist advice I have gathered focuses on getting comfortable with new bodies in the bedroom and refocusing sexual expectations. Some patients seem to recover sexual functioning better than others.
The third group of cancer patients do not necessarily have their sexual organs (or secondary sexual organs) directly affected by treatment. Nonetheless, the physical and emotional toll of surgeries, tumors, radiation fatigue, and chemotherapy can dampen libidos, even if only temporarily.
Interestingly, some people find that they have a surge in their libidos either immediately after diagnosis or once their mojo comes back. Facing mortality can do that to a person.
What have been the most helpful resources you have found on the topic of sex and cancer? Did your doctor discuss this with you during your treatment?
Tags: appearance, awkwardness, body issues, boobs, changes, coping, daily life, decisions, grief, identity loss, mental health, sexuality, side-effects
Posted in Treatment, Wellness | 15 Comments »
06.20.2010
Today is my wedding anniversary. It’s also Fathers Day. I am reminded of how incredibly fortunate I am to have landed my husband all those years ago.
I love this picture. It captures so much about the kind of daddy he is.
Cancer treatment has tested our relationship in a way that new jobs, cross-country moves, and newborns can’t touch. In all of those other stresses, we were a team. We know each other’s strengths and weaknesses. We communicate well. Although we don’t always see eye to eye, we share a set of basic values in how we live our lives. We know how to have fun and cut loose. We know that we can depend on the other one to come through, time and time again.
During this treatment, I have had to renege on many aspects of this partnership. Over the past 7 months, I have not always been able to step up when I can see he has given all he can and needs a break. I have not been able to help weigh options to find the wisest parental intervention. I have not been a good sounding board for things going on at work or in his relationships. I have not been able to say, “Honey, you’ve had a long day. I’ll get this one.” My husband has had to pick up most of the slack.
I have often talked about the crazy roller coaster ride that treatment has put me on, but my husband has had quite a trip himself. Since I had a longer stretch than expected between surgery and radiation, I started to get back some of my old vim and verve. I made a birthday party, complete with homemade cake, for my 10 year old. I handled Laundry Day from start to finish, from washing to folding and putting away. I cooked dinners. I cleaned out layers of detritus from my pack rat 7 year old’s room.
In this reprieve, my husband collapsed with two back-to-back bouts of strep throat coupled with profound exhaustion. Although I felt satisfaction in pulling more of my weight and letting him take care of himself, I lacked the generous grace I usually aim for, given that I was running at about 75% of my usual energy.
Last week was a real test for us. The radiation fatigue kicked in after 4 weeks of treatment. Our car’s gas tank got punctured, requiring a two-hour tow truck wait in 100˚ heat, hours of phone hassles with insurance people and mechanics. During a brief storm, a tall tree in the woods behind our house called it quits and let go of the soil, crashing into our back fence. And my husband got punched in the face. He was in a Thai boxing class. A yellow belt sparring partner knew just enough to be dangerous and popped him in the nose.
Right now, I can’t pull my weight. My efforts to step up and help him let go fall short. Between my limits and his depletion, the gap between his needs and my contribution is like nothing we have have ever experienced before.
All I can hope is that, over time, my energy will come back and we’ll find some kind of equilibrium again. In the meantime, we still can sing the Beatles in harmony and spontaneously break into a romantic dance in the middle of Laundry Day.
I guess we’ll muddle through somehow.
Tags: awkwardness, caregivers, changes, coping, daily life, essay, gratitude, healthy people, hope, identity loss, parenting
Posted in Treatment, Wellness | 6 Comments »
06.11.2010
My favorite tech Chris still has not had his baby. Which, selfishly, makes me happy, because I enjoy my banter with him. There is an art to having conversation that fits in and flows with the work of stepping in and out of the room to adjust the radiation machine and change the filters.
There are always two techs in the room. I know about five by now, and I usually get Chris and one of the other four. I know their names and have topics to chat with them about as well.
Today, a third person was in the room. She was clearly not a tech. Although she had a hospital badge, she was wearing a suit and heels, not scrubs and sneakers. I glanced over at her as Chris helped set my arm up in the brace. This involves me slipping out of the awkward hospital gown and putting my arm over my head.
Chris noticed my look and said, “Oh, that’s the physicist.”
“Hello, Physicist,” I said. “What’s your name and what are you doing here?”
She told me her name and that she was here to observe treatment set ups. As the techs worked to align me, rolling me this way and scooting me that way, I felt that burning sense of indignity that has been festering since my initial diagnostic appointments.
“Physicist, I am lying half naked on a table with no breasts. If you are going to be in the room and I don’t know you, please tell me your name when you come in and why you are here.”
She apologized, and I apologized back for being cranky.
The rest of the treatment, Chris and my bits of conversation amounted to me telling him how awful it was to be treated like a piece of meat. “I may be a cancer patient,” I said, “but I’m still a human being and this is my private body.”
“I think we just become kind of numb to it,” he said in one snippet.
“I appreciate that you are outspoken,” he said in another.
No wonder he’s my favorite tech.
Tags: awkwardness, body issues, coping, daily life, doctor-patient interaction, healthy people, identity loss, self-advocacy, talking, what to say
Posted in Treatment | 6 Comments »
