Archives for posts with tag: cancer

Who, what, where, how, and why are interrogatives, nouns that signal a question.

Very soon after babies start speaking words we understand, they start asking questions, “what” and “who” questions, most commonly phrased in one baby word, “Da’at?” (That, as in “what’s that?” or “who’s that?”) They are learning nouns, the names for people, places and things.

As parents, one of the challenging stages of our children’s development happens a few years later, when we are CONSTANTLY asked, “Why?” We provide the explanation, which is followed up with another, “Why?” It can be exhausting as parents often convey to me.

However, finding out “why” is not always the function of these questions. Some children are just learning that “why” is part of having conversation. Asking “why” is a way of guiding the direction of the conversation, a powerful skill, indeed. Sometimes “why” serves the function of stalling for bed, for clean-up, or for any other distasteful parental instruction that has just been given.

When I was a psychology researcher, there were a lot of questions phrased as “why”. But were they really “why” questions? It seems to me that most scientific questions are actually answering “how” questions; they address questions related to process and sequence. In treatment research, the question is even more rudimentary, “Does it work?” Treatments manipulate many many variables and as a result, it can be difficult to explicate how they work even if they appear to do so. I mean, we have ideas and models for how we think treatments may work but it is difficult to know for sure.

“How” and “why” questions can also preface statements of distress. “How did this happen?” “Why me?” Having a plausible explanation for situations, even if they are not objectively true, can be rather comforting and reduce distress.

“Why” questions are also a concentration of philosophy and religion. “Why are we here?” “Why am I here?”

As a person drawn to complexity, you might think that I would love pondering these big questions. Sometimes I do. Sometimes, I even enjoy it. But some questions are so large and complex that trying to answer the question seems to be a great oversimplification. We have enough people boiling down big problems to utter simplicity, much to the detriment of our world. Most of the current presidential candidates come to mind.

Why are we here?
Why did I get cancer?
Why is my kid having such a challenging time with life?
Why am I here?

More and more, these questions are replaced by:
“I am here.”

Most days that is more than enough.

Karen Sutherland is a dear woman whom I’ve not yet met in person. She is a cancer survivor in active treatment, a hospice nurse, a grandmother, a mother, and a recent widow. She recently spoke of a Pay it Forward day in honor of her husband, Hugh’s life on Marie Ennis O’Connor’s blog. Friday is to be “Pay it Forward Day” with the goal of encouraging others to partake in acts of kindness.

I pledged to Karen that I would honor the Pay it Forward Day. I have been thinking about what I might do. Today, it came to me. It came to me in the best way. It can to me in the way I have been bowled over by the positive consequences of small acts of kindness that I’ve directed toward others recently.

I am dedicating this week to conveying my appreciation to people in my life. I would like to start on my blog with an appreciation of Karen. Karen writes beautifully. Her words provide such comfort. It is as if her loving heart spills into each word. Karen comments on so many blogs and provides so much. Her presence in the world is a gift. Thank you, Karen! Please know that we are here for you, as well.

Peace and stay tuned,

Elizabeth

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.

 

 

His eyes were wide and near tears. He is a pre-teen boy who I first saw when he was a 3 year-old. He said, “I can’t talk about it. If I talk about it I will have to run out the door.”

The kids, I see, however, are not typically good at keeping their thoughts to themselves. I waited for less than a second and he talked about it. He talked about it a lot. His mother was diagnosed with cancer last fall. He hates that his mother’s chemotherapy makes her so sick. He blamed her oncologist. I told him that a lot of people feel that way but explained how the drugs work and their side effects.

At one point he said, “The side effects of cancer treatment have affected my behavior and my attitude.” He also noted that his mother is less patient when she is sick from chemotherapy and observed, “I’m a person who needs people to be very patient with me.”

This wonderful boy has wonderful parents. He has a unique set of challenges and strengths. He works hard to help himself and his parents work hard to support him. Cancer does not give anyone a pass. And it doesn’t give our children, even the most vulnerable among us, a pass.

The more time I spend with cancer in my life, the more I re-encounter my friend, Nancy’s statement, “Cancer has tentacles. It affects many people.”

My 30th high school reunion is this summer. One of my classmates, Brad, wanted to do a charity event as part of the weekend. Something that would raise money for Cancer Lifeline, an organization that provides counseling services, classes, and support groups for people with cancer and their families. My friend, Nancy, a psychologist and breast cancer survivor worked there for four years. It is a terrific organization. The original idea for a fundraiser is not panning out.

I know that some of you do work in charity fundraising, PR, and the like. What are some ideas you have for a fun event with a social component that would raise about $10,000?

I am so excited to be involved in this effort. Brad is a wonderful guy who is also married to one of my very best childhood friends. He is really motivated to raise money for a worthy charity that does not necessarily have the highest profile. This amount of money could go a long way for Cancer Lifeline.

Thanks!!

I recently came across a scrapbook my husband made for me to commemorate my 40th birthday. In it friends and family, old and new shared memories of their relationship with me. I came across an entry by a friend from graduate school, Beth. She and I were both married to men named “John” who were graduate students in the Computer Science Department. It was a funny coincidence. We socialized a little as married couples and I have always thought very highly of her as a gentle, thoughtful, and intelligent person. We exchange Christmas cards each year and an email every ten years. I had forgotten what she had written in my book or even that she’d taken the time to respond to John’s request. What she said was lovely that she sees me as a kindred spirit with whom she will always have a connection. She described me as “fun, smart, and safe.”

When I was a psychology intern, I trained at a medical center in which our services were integrated with the medical services. We worked with cancer patients, burn patients, spinal cord injury patients, organ transplant patients, etc. We also had a separate outpatient psychology clinic and provided testing services to the department of psychiatry.

In my work, I don’t typically work with people who are in imminent danger. I remember the trepidation I felt prior to this internship that I would have nothing to offer individuals with serious medical illnesses, especially those with terminal disease. And I really really really didn’t want to work with children with cancer and other serious life threatening illnesses. But I did.

I discovered that I had something to offer them. Even as children, they understood the danger of talking about their illness with their parents. They understood the burden. As an outsider, I could lift it. They could talk to me without fearing that they were hurting me in some way. If I empathized with the sadness, anger, and fear, I was just a supportive adult not a parent who is supposed to be the strongest person in a child’s life. And I could listen and avoid the unintentionally non-accepting messages that adults give children when they try to talk kids out of emotions because they are unable to regulate their own. Children, even children who are dying, like to play and laugh. I could do those things. I could be fun, smart, and safe.

I keenly appreciate the fun, smart, and safe people in my life right now. And many of them come from unexpected places. I left for vacation right as Diane from dglassme posted the very excellent Deep Dark Trenches of Virtual Space. Diane writes about her own link to the Internet, especially the cancer blogging community. The post is also accompanied by a photo of sharks. I identified with the post so strongly, especially the following:

When you start to look forward to seeing your doctors more than your friends, you know something has gone dreadfully wrong considering they have some pretty ridiculous personalities, or when you care more about what a complete stranger you met on the internet has to say than a close friend or loved one. Who are these people? They are mothers, psychologist, college students, diplomats, attorneys, historians, writers, nurses, surgeons, oncologist, etc.  – people from all walks of life, from all over the world – who have cancer or are working with people who have it.

During this technicolor stage of my life, especially the part of my cancer recovery during which many people in my life consider cancer to be in my permanent past, I find myself drawn to my cyber buddies. Most of them are cancer patients but others are not. But the thread that binds them is that due to personal circumstances and/or chosen professions, they are accustomed to life changing events. They deal with challenges with intelligence, kindness, and humor.

I have developed a few unique and close friendships with individuals whom I have never met in person or even spoken to on the phone. I have no frame of reference for these particular kinds of relationships. I had never blogged prior to my cancer diagnosis. My Facebook use in the past, basically boiled down to “Look at my kid!” “Look at my kid again!” (I still do plenty of proud mama posts. And by the way, “Look at my kid!”)

Sometimes I feel ill at ease with the uniqueness of the relationships. I feel at a loss as to how to explain to others how I learn so much from “strangers”. Fortunately, my husband gets it and never seems to feel left out or disappointed that I look outside of our marriage for support. Sometimes I have trouble navigating the waters of my cyber friendships, but by and large, I still feel safe. In this community, I feel that there is always someone who can sit beside me and hold my hand during the lowest points. And there will be someone who will laugh at my jokes even if they are dark. And there will be someone who communicates an understanding of what I am going through even if his/her experience is different. And since it is a community, there is always someone who can step in for support when someone else is not available. So the network is consistent and always there.

I am thankful for the times that my technicolor emotional expressions are not only tolerated but accepted because there have been a few times that I am been taken aback by the intensity and intimacy of my outpourings. I boo-hoo-hoo’d with dysregulated empathy over one of my friend’s Facebook posts, when she was having a particularly difficult day. I was embarrassed afterwards and even thought about apologizing. But knowing that apologizing for these kind of behaviors can be a kind of unnecessary flailing dance that I do, I held back. In time, normalcy returned on its own.

I have dear friends and family who help me heal and grow stronger each day. They love me and want the very best for me just like the parents of the children with whom I worked at the hospital.

But as Diane pointed out, the people, even the dearest ones in our day to day lives, don’t constantly live with cancer or some other life changing experience. When I talk to them about my fears or my illness, I know that I may tip them off of their axes and send them spinning in other directions. I have been in their shoes before and I totally get it.

Thank you for being fun. Laughter helps me deal with the ridiculous aspects of my life, it distracts me from my worry, and it gets me breathing again.

Thank you for being smart. I feel understood and connected rather than lonely and weird.

Thank you for being safe. Thank you for sitting with me in my grief and trusting me to work through it. Thank you for forgiving the times I step on toes, don’t pay enough attention, or misplace my tact.

I hope that I provide the same things for you. Cancer is scary enough without scaring each other.

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The Empowered Doctor site has written a story about the impact of the budget sequester on cancer patients as well as on the health facilities who treat them. To read the story click here.

For those of you who live outside of the U.S. and may not be familiar with this issue, you can read about it here.

I you don’t like what’s going on, I encourage you to contact your U.S. Senators and Representatives, if you haven’t already done so.

In the mean time, I would like to express appreciation for all of the wonderful bloggers out there who are respectful in expressing their beliefs and engage respectfully is disagreements. We have to be able to work with each other. Call it a grass roots campaign for respectful interaction, flexibility, and reason.

I know, it’s not as catchy as the “Tea Party” but we could use a little less flash and a little more boring substance. Plus, I couldn’t think of a funny name. I will leave that Jon Stewart and his writing team.

 

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).

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