Archives for posts with tag: breast cancer and identity

My official title is “Dr. MacKenzie”. This is because I have a doctoral degree, a Ph.D. in psychology. In formal settings, I introduce myself this way. I also introduce myself this way to groups of children, for example, when I used to supervise my daughter’s classroom so that the teacher could have a break for lunch. I didn’t see a reason to introduce myself otherwise and further, I think it is a good example to girls to know that women can get advanced degrees.

My first job after getting my Ph.D. was a post-doctoral fellowship. When my husband was doing our taxes, I felt very diminished when I saw that he had listed my profession as “student”. And then I got really mad at him when he tried to justify it by saying, “What’s the difference?” I am not an unforgiving woman but I will tell you that I get hurt quickly at these times when the response is something other than, “Oops, I’m sorry. I will fix that right away.”

A long time ago, the term “doctor” became the name of a profession rather than reflective of whether one had a doctoral degree or not. The term “doctor” became synonymous with the perfectly excellent and specific name, “physician”. I don’t know when this started but my dissertation chair claimed that the doctorate, the Ph.D., goes back to the Middle Ages and that M.D.’s stole it.

Words matter but I am finding increasingly in my own professional life that it doesn’t matter so much to me. I am older now and established in my profession. I have a good reputation. I no longer live in the very sexist world of academia. In the clinical world, working with children and adolescents, being female is more desirable, generally. Lots of my patients’ parents call me by my first name. It’s not a big deal to me on a personal level. But it is a significant deal when it comes to my profession. People understand that physicians complete many years of training and education. A lot of people think that I have a master’s degree, which is a fine accomplishment, but on average involves five less years of training and education.

Similarly, words matter in the world of breast cancer. Most of us who have it are women and if we are paying attention, we have learned that sexist words matter, too. There are words and phrases in the breast cancer community that have resulted in people feeling diminished such as “survivor” or the war analogy. These words matter because they define us and impact the way others view us.

I don’t want to diminish anybody so I am careful with the words I use. But on a personal level, I don’t mind the terms “survivor” or the war analogy, even if I don’t use the latter in reference to myself.  I understand why they bother people and I empathize with that. And I am a firm believer in each of us having the right to self-define.

But there’s the tricky bit, if we don’t at least a little shared language and identity, having cancer can be even more lonely. And if we have too much shared language that doesn’t resound with us at an individual level, it is that lonely feeling we have even when we are surrounded by people. And when other people who don’t even have breast cancer tell us what our identity is, that’s just hurtful and maddening!

I know I have written about this time and time again but it is no wonder that the balance between connection and distinction is a major task for adolescent identity development.

Whatever we chose to call ourselves, I am so happy to be part of this community and wish all of you the very best of health.

I met with a delightful teen boy recently for a reassessment of his ADHD.He was in nearly perpetual motion, fidgeting, tapping his fingers on the arm rest, tapping his toes, and switching from one seat to another every 5-10 minutes or so. Although friendly and polite otherwise, he also interrupted frequently and I could tell that if I laughed too much at his jokes, I might lose him in a fit of giggles, non sequiturs, and additional jokes. It was hard because he was really funny!  Although delightful, the behaviors I described are signs of hyperactivity and impulsivity. He also had a long history of difficulties with inattention.

His symptoms were first noted when he was in kindergarten and he was subsequently diagnosed with ADHD in grade 3. There are three subtypes of ADHD: Combined presentation (significant inattention and hyperactivity/impulsivity), predominantly inattentive presentation (significant inattention but not significant hyperactivity/impulsivity) and predominantly hyperactive/impulsive presentation (the reverse pattern of predominantly inattentive).

There was no report available of his ADHD diagnosis. I saw him practically rolling around my office so I said with a slight wink in my voice, “I see that you were probably diagnosed with combined type ADHD?” His mother, a physician, replied with some surprise but non-defensively, “No, purely inattentive type.”

I said, “I see that your 11 year-old son also has ADHD. What is he like?” Not surprising to me, younger brother is a major fireball. And as the frame of reference, older brother is comparatively sedate. Also, older brother does not have a history of behavior problems. In many people’s mind, ADHD is synonymous with behavior problems like arguing, fighting, and having anger control problems. The truth is that a large proportion of children with ADHD do have behavior problems but what’s little known is that behavior problems are not part of the diagnostic criteria for ADHD.

ADHD is really complicated. It’s presentation varies widely from person to person as well as across development. People with ADHD display a different pattern of neuroanatomy as well as neorophysiology. When I am explaining ADHD to a science-minded teen, this is the time when I geek out and start drawing diagrams of presynaptic and postsynaptic neurons as well as relative differences in dopamine re-uptake in people with ADHD verses those without ADHD. I will spare you this part of the presentation. If ADHD, based on our current understanding, could be boiled down to one problem, it would be difficulty attending and persisting on tasks that are not interesting and/or fun.

ADHD also does not define a person. They have other strengths, weaknesses, skills, aptitudes, and personality attributes. Treatment response also varies from person to person. So, people with ADHD are not one person. They are all individuals. So why do I often hear people argue that someone definitely has or doesn’t have ADHD based on a limited frame of reference. And I’m not just talking about people with a vested interest in the diagnosis. I include casual observers, some extremely sophisticated, but who treat diagnosis and treatment like common knowledge. These folks also love to give advice and unsolicited opinions to the parents of my patients, to my patients, or to me if we’ve just met and I’ve answered the question about what I do for a living.

Does this sound familiar to any of you out there? It’s kind of like how everyone is becoming an expert on breast cancer. How they might tell you what kind of treatment you should get because they know someone who had breast cancer and it is assumed that all breast cancer treatment is equal. There may also be people who assume that they can predict another person’s breast cancer prognosis. There are assumptions about how people with cancer should look, act, or feel.

I know there are a lot of breast cancer patients who feel blamed for their disease. It’s not that I have not felt empathy for people with that view, it’s just that it didn’t resound for me because of my frame of reference. In my professional life, I work with children who are often blamed for their disease, even children who are in preschool. As a cancer patient, I had a much different experience. No one told me, “You need to stop having cancer right this minute!”

So the sense of being blamed did not fit into my immediate frame of reference after being diagnosed with breast cancer. But I am learning from all of you, from our shared and unique experiences. I am very thankful to be part of a community that “get’s it”. A community where it is okay for me to reveal faults and fears without being seen as wrong in some way. I appreciate your adopting a very wide frame of reference, one that accommodates personal choice, individuality, and the fact that breast cancers impact us but do not define us.

I was in line at my bank last weekend, waiting to make a deposit. There was a customer talking to one of the tellers:

Teller (politely): I’m sorry ma’am, we now require picture ID to make cash deposits. May I see your driver’s license.

Customer (annoyed): I never had to do that before. I don’t want to do this every time. Can’t you just use visual recognition?

T: I’m sorry, ma’am but I don’t know you.

C: But you gave me two piggy banks last week!

T: I’m so sorry. I’m new and I have not learned everyone’s face yet.

C: How long have you worked here?

T: I started at this branch in December, ma’am.

C: By my recollection, you’ve worked here five months! Did you work here intermittently?

T: Yes, ma’am.

The customer left having taken 10 seconds to produce photo ID and far longer in first arguing with the teller and then using up time to prove her wrong that she was “new” to the branch.

As a cancer patient, I am asked to produce my insurance card all of the time, so frequently that I keep it in a very accessible pocket on the outside of my purse, right behind my driver’s license. I was tempted to show this lady my purse and say, “Look, instead of digging your ID out of the main compartment of your overnight bag-sized purse, you could have this handy dandy purse that makes it so easy to prove your identity!”

I said nothing. It would not have done any good. I suspect that having the inconvenience of digging her ID out of her bag every time she made a cash deposit was not the issue. She wanted to be recognized. She wanted to be seen, to be important, and to matter. We all want to be recognized from time to time.

Having cancer can be a challenge to one’s identity. It can impact us in different ways from person to person and change over time. Treatment can be so physically, emotionally, and spiritually altering that it can be hard to recognize oneself.

A lot of us dislike the pink ribbon culture because we don’t recognize ourselves in it. That is the biggest disconnect for me because the corporate presence has made it about making money, not about breast cancer.

Other associations are murkier. For example, many people do not like the war metaphor in fighting cancer. For others, it rings very true. I don’t have strong feelings about it as long as the metaphor is used as a coping strategy that makes sense to the person at the time and is not used as an explanation for why some people die from cancer and some don’t. Coping strategies should not be used to blame people for dying. Coping strategies are ways to make the best of a bad situation.

A lot of people do not see themselves represented in the breast cancer research, especially as reported by the media. A lot of people feel like research findings are blaming people for having gotten cancer. I have a hard time with that. I don’t feel blamed by research but then again, I was a researcher for many years. My particular case of breast cancer fits some research on risk factors. For example, I have a history of obesity and did not breast feed until after I was age 30. I understand the evidence against women under 50 getting mammograms and even agree with it. However, I was 46 and invasive cancer was uncovered by a routine mammogram. I did monthly self exams and annual clinical exams with my physician. Even after I knew I had cancer and the location of the tumor, I could not feel it. I know that there’s a concern about over treatment of breast cancer but as it turned out, I had four invasive tumors. Given that the growth of cancer is progressive, I would have preferred to learn about my cancer earlier rather than later.

I suspect that just as we do during different identity transformations in our lives, as breast cancer patients, we try on different concepts and struggle against outside definition from others until we feel weave a new spider web that makes sense, one in which we are connected with others but recognizable as the unique individuals we are.

 

 

When I picked up my purse today, I discovered that I’d left a zipper open and a number of cards fell out onto the floor. One of them was my medical device identification card.

Going to the airport with a tissue expander? Don't leave this at home.

Going to the airport with a tissue expander? Don’t leave this at home.

I received this card on 9/26/12. That was the day of my tissue expander placement surgery, nearly two months after my mastectomy. Tissue expanders are usually used to stretch the pectoral muscles and skin prior to implant surgery. In my case, it was basically used as a place holder and a skin stretcher during the six months prior to my TRAM reconstruction.

I remember thinking that this card was kind of funny. The tissue expander looks like a poached egg. The “yolk” is a magnet. Tissue expanders are gradually filled with saline over a several month period. (This is one of the reasons that breast reconstruction can take such a long time, by the way.) There is a port in the expander, which it can be filled using a syringe. A “stud finder” type device is used to locate the magnet, which marks the way to the port, and tells the surgeon where to place the syringe full of saline. It’s really kind of an elegant design. A couple of magnets, a plastic bag, and syringes of saline. The magnet is metal, which poses some problems at the airport. Hence, the card. On the back, it is signed and dated by my surgeon.

The expander served it’s purpose but it was weird. A friend of a friend called it a “breast like object.” I called it an, “undercover piroshky”. It was an odd shape and since mine was right under my skin, I could feel the outline of the metal and the firmness of the plastic. When I pressed on the skin over it, it was like pressing on the seal of a Tupperware lid. It set two inches higher than my left breast, and was flat on top, creating a shelf. I often joked that if I were a party girl, I could have balanced three shot glasses on that savory pastry shaped implant.

My expander was removed on March 11th, over four months ago. There’s transplanted abdominal tissue where that plastic expander used to be. So why is this card still in my purse? You might observe that you yourself, have all kinds of cards in your purse or wallet that are no longer of use. And if you don’t clean out your wallet or purse, cards accrue because everything has a card these days. However, my obsolete medical device card fell out of my purse today AND I PLACED IT BACK IN MY PURSE KNOWING FULL WELL THAT I NO LONGER NEED IT.

I’m not sure why I still have it except that the expander was part of my experience with breast cancer. The experience is still very much a part of me. For the past several weeks, I have been working on my grief and loss regarding breast cancer. And when one grieves one loss, other losses often bubble to the forefront. It is unpleasant work I am doing. There’s a reason there are no books out there like, Ten Awesome and Fun Ways to Grieve. But it is really important to do this work in order to heal.

I think I will always have souvenirs of cancer, the scars, the permanent lack of sensation in my right breast, and the memories. I have this blog.

I don’t need a breast cancer membership card.

I know who I am, where I have been, and where I belong.

 

Art, Science, Heart ❥

journals of a mature student nurse

Heart Sisters

For women living with heart disease

George Lakoff

George Lakoff has retired as Distinguished Professor of Cognitive Science and Linguistics at the University of California at Berkeley. He is now Director of the Center for the Neural Mind & Society (cnms.berkeley.edu).

KomenWatch

Keeping our eyes and ears open.....

Life in a Wheelchair

You never think it could happen to you!

4 Times and Counting

Confessions Of A 4 Time Breast Cancer Survivor

Nancy's Point

A blog about breast cancer, loss & survivorship

After Twenty Years Cancer Research Blog

Exploring progress in cancer research from the patient perspective.

My Eyes Are Up Here

My life is not just about my chest, despite rumblings to the contrary.

Woman in the Hat

Cancer to Wellness in 1,038,769 Easy Steps!

SeasonedSistah2

Today is Better Than Yesterday

Telling Knots

About 30% of people diagnosed with breast cancer at any stage will develop distal metastasis. I am one.

The Pink Underbelly

A day in the life of a sassy Texas girl dealing with breast cancer and its messy aftermath

The Asymmetry of Matter

Qui vivra verra.

Fab 4th and 5th Grade

Teaching readers, writers, and thinkers

Journeying Beyond Breast Cancer

making sense of the breast cancer experience together

Telling Knots

About 30% of people diagnosed with breast cancer at any stage will develop distal metastasis. I am one.

Entering a World of Pink

a male breast cancer blog

Luminous Blue

a mother's and daughter's journey with transformation, cancer, death and LOVE

Fierce is the New Pink

Run to the Bear!

The Sarcastic Boob

Determined to Manage Breast Cancer with the Same Level of Sarcasm with which I Manage Everything Else

FEC-THis

Life after a tango with death & its best friend cancer