Posts Tagged ‘awkwardness’
I had my (almost) 3 year follow up appointment this past week.
The good news: NED.
The bad news: The life of an oncology patient is still often beneath my dignity.
I arrived to the clinic early. Since I am a patient in a teaching and research hospital, this often means I get to help the new residents practice their clinical skills. I am an educator, so I believe in the value of this kind of training.
It’s just sometimes hard to take when I have lost a night’s sleep worrying about impending lab results.
So the newbie doctor went through his clumsy interview. I confess I was not a patient patient as he (re-)explained many aspects of my treatment and the side effects I am experiencing.
I thought, Oh really? The shooting pain down my arm might be nerve damage and lymphedema?
Yeah. I know. I’ve been going to physical therapy twice a week.
He proposed Cymbalta for the nerve pain. I brusquely told him that I am a Side Effect Queen.
Drugs are seldom worth the trade off for me.
I could tell he wanted me to like him and put him at ease, but I didn’t really feel it was my job. He has to get used to us oncology folk.
Then my real doctor came in and did her thing. I was relieved. She too wanted to talk me into the Cymbalta for my nerve pain.
Did the Cymbalta people take you out to a nice dinner at the last ASCO meeting? I joked.
No, they don’t make enough money off of me.
She knows how to roll with me. This is why I love her. She continued, joining in on the snark.
This is a low dose. It’s like licking a f***ing pill. If you don’t like it stop. But it won’t hurt you to try and it could help.
I turned to Junior Doctor and said, Watch and learn from the master.
I agreed to try the Cymbalta.
As my doc continued her thing, I noticed that the young one had started fiddling on his iPhone.
I felt my heart rate go up. A half dozen call-outs flashed through my mind.
Really? That camera is pointed right at me dude. Are you live tweeting your clinics? What’s the hashtag?
I can tweet it too and let my followers weigh in. Oh are you Instagramming? I’m pretty sure that violates HIPAA.
When he left the room for the exam portion of the appointment, I said to my doc,
Dude was on his iPhone. Not cool. You need to say something about it.
I will, she assured me.
After the appointment, I blew off some steam by posting about the incident to my social media peeps.
They came up with some snappy comebacks too:
Dr. Douche, does the AppStore have anything to help me find a better oncologist?
Hi. Is it Doctor X? Hi Dr. X. I’ll just take that from you: It’s distracting. You can pick it up from me at the end of my consultation.
So sorry. Is my medical appointment interrupting your texting?
This cap fest was gratifying in a sophomoric kind of way.
But I realized what I really wanted to do was get him to realize that this meeting was not about him.
To give him a good dose of empathy.
Listen, Doctor. I am sure you are a smart guy and have done well in school and studied hard to get to where you are.
Can you imagine that I did that too? I built my life, was moving forward, taking care of myself, my career, my family and then BAM! CANCER.
You are new to My Cancer but I am old hat now. I have been doing this for 3 years. Three effing years. Every time I come to one of these appointments, it feels like a lot of bull. All the pain, all the fear, all the bad times come back to the surface for me as I sit in this office, waiting for my latest news.
Treat me with humility: you don’t know the extent of my experience. Offer me information with the understanding that I may have heard this before: this has been my life. Don’t expect me to reassure you: that is not my job. I have a lot on my plate. You need to get your affirmation elsewhere
Oh, and also?
Put away that damned phone.
I realize that NED gives me the luxury to bitch about these details. I am grateful.
I hope that my griping helps those of you who are in treatment or are dealing with long term disease.
I emailed my doctor to make sure she followed up on the phone. She did. Doctor Junior is sorry and won’t do it again.
I kicked the Cymbalta after one dose. It made me unspeakably nauseous. The Side Effect Queen continues her reign.
Tags: advocacy, awkwardness, changes, coping, doctor-patient interaction, education, identity loss, mental health, self-advocacy, social media, support, what not to say
Posted in Survivorship, Treatment | 15 Comments »
I haven’t read Susan Gubar’s new memoir about her terminal ovarian cancer yet. The famous literary critic explained that she was motivated, in part, by a problem that Virginia Woolf’s generation of women writers had failed to solve: telling the truth about the experiences of a woman’s body.
I resonate with this motivation. As I explained in an early blog post, I have always found the silences around our bodies to be a strange form of culturally mandated dissociation. We all have bodies. They all have feelings and experiences, but we are somehow raised that it is impolite to discuss them.
The loneliest moments I have ever experienced have been in unanticipated, unrecognizable corporeal suffering. Somehow, putting words to these sensations and having others recognize them makes me feel less alone by acknowledging an important and essential aspect of our common humanity.
So here I am, having another intensely bodily experience. After two years and seven months since my diagnosis, my cancer treatment is coming to an end. My Medical Body is becoming a Private Body again.
Let me rewind a bit for you and explain. Early on, it became clear that Medical Bodies are not granted the normal respect granted to healthy bodies.
During my first diagnosis meeting with a team of doctors and residents, I heard the information about my disease: staging, tumor type, treatment plan. Needless to say, I was in shock.
Then the team wanted to “palpate my tumor.” I was to remove my hospital gown, stripped from the waist up, and sit on the exam table while, one by one, the doctors basically felt me up. I caught eyes with my husband, as we were both struck by the new bizarro world we had entered. This activity would have seemed inappropriate and lacking dignity just days ago. Now I was expected to endure this as a procedure, allowing the doctors to individually assess the location and size of the cancer.
This was only the first of many insults to my body. They are too numerous to list, but I will name a few to give you a flavor.
• The prolonged pain after my port placement that my surgeon responded to as “no big deal.” (I later fired her.)
• The way some nurses abruptly flip on lights in the wee hours during a hospital stay so that they can “take your vitals.”
• The way your bald head causes some cold-hearted people to shun you because you represent disease and mortality.
• The way some chemo nurses will “push” your infusion at the end of their shift so they can go home, even though it hurts.
• The way strangers simply appear without introduction when you are half naked on the radiation table.
As my reconstruction has progressed, the procedures have gotten more intimate.
Really. It is not possible to be any more flat-chested than this.
First, I went from my truly flat-chested body to one with some roundness. Then, I switched out hard tissue expanders for softer implants.
Now, the most intimate surgery of all is on deck:
It is so so private to talk about nipples. I can barely stand it.
But the awkwardness also marks a welcome return.
My Medical Body is becoming a Private Body again. And I am so thankful for that.
Tags: appearance, awkwardness, body issues, changes, doctor-patient interaction, reconstruction, straight talk, survivorship
Posted in Survivorship, Treatment | 24 Comments »
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 | 9 Comments »
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 »
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 »