Archives for category: Feelings

I have concerns about Angelina Jolie’s lifestyle and I still respect her healthcare decision.

I acknowledge the possibility that she made her announcement because she loves attention and I still respect her healthcare decision.

I have researched the problem of over-treatment of breast cancer and I still respect her healthcare decision.

I know that hospitals have money-making as well as helping people goals and I still respect her healthcare decision.

I disagree with the priorities and politics of the Komen Foundation and I still respect her healthcare decision.

I believe that the obsession with Angelina Jolie’s youth and beauty is detrimental to girls and I still respect her healthcare decision.

I am angry with Myriad Labs for patenting genes and I still respect her healthcare decision.

I could go on and on but I will end with this. I have been planning to write a post describing my decision to have a right-side rather than a bilateral mastectomy. I know the title of the post and I already have my research references lined up.

Why haven’t I written it?

I haven’t written it because I don’t want to invite feedback that is not respectful of my personal healthcare decision. And even more importantly, I do not want to unintentionally give any of the breast cancer people out there the message that I am questioning your personal healthcare decisions because mine were different than yours.

We are all people and all individuals. We can make different decisions and still respect each other. It doesn’t matter whether we are in the “pink crowd” or not.  Breast cancer prevention and treatment options are still gray. I made my treatment choices. Time will tell whether I made the right decisions but to me, they seemed the best decisions I could make based on the information that was available at the time. We are individuals, we have brains, and we have the right to make decisions that we believe are best for us.

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I have such wonderful friends and family, some of whom came to our house yesterday for a weeding party.

What is a weeding party, you ask? Basically, it was a way for me to ask for help with my yard. Repeated surgeries on my right side had resulted in a year’s worth of neglect of my yard by me. My dear neighbor, Deana has helped a lot, especially with deadheading. But there were two big projects in the front garden that were getting me down: (1) The encroachment of grass on the west side of the yard and (2) the overtaking of an entire section of garden by a very pesky and intrusive wire weed. It was so cute in it’s little pot when I bought it as a ground cover several years ago. Little did I know that it was like a mini form of kudzu, the vine that has been choking off entire trees (and a barn in this photo) in the southeastern U.S.

With our little work crew, we were able to get the job done in about 1 1/2 hours. Then we had food and hung out on the new deck, that John has nearly finished except for staining the wood. The lilacs are in bloom and the scent was wonderful. It was a glorious day.

I had a hard time asking people for this help. But I kept reminding myself that people have kept asking what they could do to help and how much less helpless I feel when there’s something concrete I can do for a loved one in a time of need. It was a beautiful day, a celebration of love and kindness. Plus, the apple pie I made turned out extra pretty. (I heard it tasted good, too but I am not eating wheat these days and didn’t want to do a test drive with a gluten-free crust recipe on company.)

First things first. Is this pie a beauty, or what? The lovely caramelized top was an accident. I had so many apples to use up that I cooked the filling on the stove top before I filled the pie so that it would reduce in volume a little. It's a good thing I did this as my pie dough was not well behaved enough to roll into a full top and bottom crust. The pre-cooking kept the apples from drying out in the oven. Okay, enough about pies; let's move onto the garden.

First things first. Is this pie a beauty, or what? The lovely caramelized top was an accident. I had so many apples to use up that I cooked the filling on the stove top before I filled the pie so that it would reduce in volume a little. It’s a good thing I did this as my pie dough was not well behaved enough to roll into a full top and bottom crust. The pre-cooking kept the apples from drying out in the oven. Okay, enough about pies; let’s move onto the garden.

This is just after I took the first chunk out of the wire weed invasion.

This is just after I took the first chunk out of the wire weed invasion.

1 1/2 hours later and the wire weed is gone! Yay! Most of this work was done by my cousin, Catherine and my husband, John.

1 1/2 hours later and the wire weed is gone! Yay! Most of this work was done by my cousin, Catherine and my husband, John.

We dug up a lot of compost in 1 1/2 hours! Tomorrow it will get picked up by waste management and become part of Seattle's awesome composting program!

We dug up a lot of compost in 1 1/2 hours! Tomorrow it will get picked up by waste management and become part of Seattle’s awesome composting program!

Thanks, Mom, Dad, John, Catherine, Deana, Jennie, and Preben for making my yard feel manageable again. I'm eager to go out again next weekend!

Thanks, Mom, Dad, John, Catherine, Deana, Jennie, and Preben for making my yard feel manageable again.

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I’ve read a lot about “chemo brain” in breast cancer blogs. A lot of breast cancer patients observe a decline in their attention and memory during and after chemotherapy. They complain to their physicians and many of them feel invalidated by the responses they receive. This is in part, because the evidence of chemo brain is sparse. (Before you throw your shoe at your computer, bear with me.)

I have a Ph.D. in psychology and in addition to my seven years of graduate school during which I conducted research, I worked as a researcher for 10 years after I graduated. One of the things that researchers are trained to do is to test hypotheses and sets of hypotheses. In clinical research, there is also the testing of treatments in the context of clinical trials. We are trained to interpret hypotheses in terms of whether they are empirically supported or not. If they are supported in multiple studies, we accept them as “truths” (there are no absolute truths), especially if findings are replicated by another lab. If they are not supported, we conclude that (1) the hypothesis was incorrect or (2) the hypothesis was tested incorrectly.

However, there is a third reason why a hypothesis has inadequate research support and that is when the hypothesis has not been adequately tested. Now as far as I can see, this is the case for the chemobrain hypothesis. So does the fact that it does not have adequate experimental support mean that it doesn’t exist? No, it means that it could exist but we don’t know because we haven’t thoroughly looked at the question. A downside of our careful and methodical ways is that we take our sweet time assessing potential “truths.” This is also a source of frustration for most of the rest of the world. Further, sometimes as researchers or as clinicians who do evidence-based practice, we lump all of the hypotheses that have not yet been deemed empirically-supported into the same group. For example, when asked, “does treatment x work”, they might answer “no” even for a treatment that has never been tested. The correct answer in this case is “We don’t know.” As a clinician who is supposed to have the answers, it is hard to say this to people. But it’s part of our job. To the great credit of my oncologists, they are both extremely knowledgeable but honest about the limitations of their respective fields. My breast surgeon actually discussed the concern about over treating breast cancer because they do not yet know how to distinguish between tumors that will spread verses those that will not. (In breast cancer, an estimated 25% of tumors never spread. If you want this article, let me know. I have the .pdf and it was given to me by a childhood friend who is a professor at Rutgers and does cancer research on polarity in cancer cells.)

Then there is the confusion provided by some (not all) of the folks in the media who go around spreading rumors and making generalizations based on one small result from a single study. Or who totally misrepresent the findings of a research study. Unfortunately, most of us do not have university library privileges that allow us to check out the primary source material on which the story is based. Also, even if we could, we might not have the necessary background knowledge to interpret the study. As an example, there was a news story that made it rounds in the blogisphere recently. The investigators used used neuropsych measures and found that breast cancer patients who underwent chemo showed declines in executive functions such as memory. The comparison group were “healthy controls.” So a group of women who have been subjected to a variable onslaught of chemo, surgery, radiation, endocrine therapy, not to mention the stress of having a serious illness were compared to women with no known medical problems. The story was presented as evidence of chemo brain. This is not specific evidence of chemo brain because chemotherapy was one of many variables that could explained the findings. Does this make the study useless? No, I think it shows that the cancer assessment and treatment experience is associated with a decline in cognitive functioning. It is a little bite out of a much larger question. Further, the use of neuropsych measures was really smart. They can be more sensitive to subtle real world changes than other measures plus they are safer and probably less expensive (I’m guessing that they did not do a full neuropsych battery, which is kind of expensive) than using an MRI.

Boy, I wish I could remember where I saw that article but I can’t remember where I saw it. That’s because my attention and memory have been impaired since I was diagnosed with breast cancer nearly a year ago! As a psychologist, I validated this for myself as the stress alone of having cancer is enough to impair executive functions. And also as a psychologist, I don’t dismiss the real impact that stress can have on a brain. In simple words, psychological stuff is real. People might say, “It’s all in your head.” Guess what? Your head is part of your body. Also, your brain is in there and it’s kind of an important organ.

Stress impacts cortisol regulation. Cortisol is a hormone that is triggered by stress and it’s purpose is to help us function better during those “fight or flight” times of our life. A problem with this is that too much stress or chronic stress can break down this regulatory system and lead to a break down in attention and memory. Speaking of hormones, there is another hormone that is thought to be important in memory functioning and that hormone is estrogen. Most, but not all breast cancer is estrogen responsive. How many of us have our cancer treated with hormone blockers? So at least some of that fog could be due to reduced estrogen. I am not an endocrinologist and concede that I am oversimplifying the role of these hormones to make my point and also because I don’t understand endocrinology terribly well. But my larger point is that there is evidence that (1) cortisol and estrogen functioning impact attention and memory and (2) cortisol and estrogen functioning is impacted by having and being treated for cancer. And theses are just examples. There are a lot of potential mediated relationships (indirect effects) as well. Interrupted sleep impairs attention and memory, too. How many of you haven’t had difficulty sleeping due to the stress of cancer or due to increased hot flashes, for those of you who receive endocrine therapy?

But what about chemotherapy? All of my chemical warfare has been in the form of anesthesia, pain meds, tamoxifen, and Lupron. I did not receive I.V. chemotherapy. My heart is with all of you who are enduring or have endured this. It’s not unreasonable to hypothesize that chemotherapy drugs might have a direct negative effect on memory and attention. The blood brain barrier does not exactly work like Fort Knox in keeping chemo drugs from entering it. There is some permeability. So at least some of those nasty chemicals might get in and do damage. (I’m not a neuro-pharmacologist or neurobiologist but I believe that my general point is true.) And perhaps some of that damage might be to parts of the brain that impact attention and memory. And I do see some research in my Google Scholar searching that supports these hypotheses. But one job of a researcher is to interpret findings from a single study into the larger context of multiple studies. They also use the level of rigor of the particular journal in which the article is published in their interpretations. I can do this in my own field but this is after many years and having read thousands of research studies.

One question that is buzzing around my head like a gadfly is “Why isn’t this question rigorously tested?” If any or all of the chemotherapy drugs cause cognitive decline, shouldn’t we investigate it so that patients can be informed of the potential treatment side effects? Isn’t it important to know whether the potential effects vary in duration, frequency, or intensity as a function of the drugs chosen for treatment? And in the mean time, let’s hear it for better integration of psychology into cancer research and treatment. I think we can all agree that cancer is stressful. We also know that it increases risk of anxiety and depression. Stress, anxiety, and depression can all negatively impact attention and memory. We have tools for addressing these issues and some of them like mindfulness meditation are incredibly cheap and safe. Finally, we are trained in measurement as well as in research design and clinical trials.

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Okay, I exaggerate slightly. I am still having the occasional hot flash since starting acupuncture. However, I had a Lupron shot last week and usually the hot flashes get much worse right after the shot. This did not happen this time. Further, I am feeling cooler at other times of the day. Even before my breast cancer diagnosis, I was in peri-menopause. I often felt on the warm side. I feel a bit more like I used to before this hormone dropping part of my life.

I am cautiously optimistic. If the trend continues, I may never know for sure if it was a result of the acupuncture or some other reason/s. But that’s okay because a benefit of life as a tainted test tube is that I get to enjoy a positive outcome whether I understand the how’s or why’s behind it or not.

I’m back to work after 7 weeks off. Unlike returning to work after my last major surgery, I am better rested and in turn, more enthusiastic about my return. It’s like the first day of school!

Here’s my terribly lit self-portrait.

Darn, not only are the lighting problems obscuring my head on a particularly good hair day, but I cut off my feet. I wanted to show off my black Prada pumps that I picked up at a second hand store for $15!

Darn, not only are the lighting problems obscuring my head on a particularly good hair day, but I cut off my feet. I wanted to show off my black Prada pumps that I picked up at a second hand store for $15!

Okay, my $15 Prada pumps pulled a Gloria Swanson in Sunset Boulevard type diva move. They insisted on being added to this post. Okay, crazy shoes. I hope I captured your "good side" in the photo.

Okay, my $15 Prada pumps pulled a Gloria Swanson in Sunset Boulevard type diva move. They insisted on being added to this post. Okay, crazy shoes. I hope I captured your “good side” in the photo.

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blog-award

A very heartfelt thank you to Diane of Dglassme’s Blog  for nominating me for a Very Inspiring Blog Award. It must have been that belly button scar photo I posted the other day that put me over the top! Seriously, I have followed Diane’s blog for quite some months now. She is brave, no nonsense woman with an interesting and honest perspective on her breast cancer treatment. Diane also writes joyously about what her relationships with her gorgeous Golden Retrievers add to her life.

I am writing about someone who inspires me and that is my friend, Shirley Enebrad and her son, Cory. I met Shirley through her husband Steve Geller, a fellow psychologist and friend, with whom I share an office. He is the one who is moving to Hawaii in about a month and has inspired a frenzy of furniture shopping to replace the stuff he is taking.

I’ve never met her son, Cory. He died about 20 years ago at age 9 of pediatric leukemia. Steve knew him (Cory was a child from Shirley’s first marriage) because he was working as a grief counselor conducting kids’ groups. Cory was in his group. This is also how Shirley and Steve met each other. Cory was an extraordinary boy with an extraordinary mom. Shirley wrote a quite moving book about her life with her son called, Over the Rainbow Bridge. It is an amazing and inspiring story. Cory’s life transformed the lives of those around him. I know that sounds dramatic, but it is true.

Here’s a quote from Elisabeth Kubler-Ross, M.D., the pioneering psychiatrist who wrote, On Death and Dying:

Cory was my favorite patient ever, and he taught me more than I could ever teach him. His lessons about the afterlife were profound, and his drawings of what he saw “over the Rainbow Bridge” helped thousands of people get in touch with their long-buried emotions.

I can only imagine the shattering trauma of losing a child. I know that Shirley’s heart still aches for her son, who if he had lived, would be near 30 now and perhaps have children of his own. Shirley became a tireless worker on behalf of children with cancer. Prior to her moving to Hawaii, she was the person who put together every one of the educational baskets that families of newly diagnosed cancer patients receive at Children’s Hospital in Seattle. That hospital serves a six state area. Shirley has organized fundraisers, written grief materials for children, and provided grief counseling to others. That’s just the tip of the ice berg of her service to families and children. On top of it all, Shirley and Steve have served as foster parents to a number of children over the years in addition to raising two children of their own, who are now both adults. In addition to being incredibly generous and skilled with very challenging children (with trauma histories of their own) for Shirley to take on foster children, who typically end up leaving your family, is incredibly courageous for one who has lost a child in the past.

Shirley has just published a new book, Six Word Lessons on Coping with Grief: 100 Lessons to Help You and Your Loved Ones Deal with Loss. It is downloaded onto my Kindle and I’m looking forward to reading it. She did not ask me to publicize her books on my blog. I love celebrating my friends’ accomplishments and sharing resources with people who might appreciate them.

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Lindbergh High School Reunion '82, '83, '84, '85

Join us this summer for our reunion in Renton, WA!

George Lakoff

George Lakoff has retired as Distinguished Professor of Cognitive Science and Linguistics at the University of California at Berkeley. His newest book "The Neural Mind" is now available.

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