Archives for category: Facts

This post is from 7/31/12, the day of my first visit to see Dr. Welk. It was surreal. I have re-posted this previously. It is a favorite of mine. Personally, it took me awhile to feel comfortable in a plastic surgery office. I have such strong associations between plastic surgery and poor body image. But I now feel at home there and Breann and Judy who work reception are always so friendly to me when I come in. They are now requesting that I visit them from time to time as it is clear that I have very few remaining appointments with Dr. Welk. (Knock on wood.)

This afternoon I met with Drew Welk, M.D. a plastic surgeon at the Polyclinic. We had a good meeting and it was interesting to shift from a physician who focuses on disease treatment to one who focuses on aesthetics. I found out that my incision is not in the best place to which I replied, “Yeah, my cancer insists on being all kinds of inconvenient.” To his credit, he laughed at my ribbing. I did learn that I have very favorable “breast geometry” with only a little post-partum loss of muscle tone. Yay, my breasts got complimented! They’ve been a little starved for positive comments lately, especially the right one, which is currently looks like a more than a  little like a dented tin can these days.

Dr. Welk is talking to Dr. Beatty tomorrow to share his input regarding the best way to make incisions for the mastectomy so that he has something reasonable to work with later after the fat has been removed from my skin, the latter of which I get to keep. He took pictures in the clinic photography booth, which was set up like the DMV, except for the fact that I was partially disrobed and he had his choice of three different expensive looking cameras. (Or maybe the other cameras belonged to other surgeons. That makes more sense.) He took the last picture after he’d drawn a little incision map with a Sharpie.

It wasn’t as bad as I thought it would be and I liked him. Plus it was a surgery day for him so between his energetic demeanor and the fact that he was wearing scrubs, he looked like a surgeon action figure. (Not to be confused with 1973’s surgeon Barbie and yes, she was real; click the link. Also, not to be confused with an action figure for the character, Surgeon from Hellraiser 2. Mom don’t go to that link: That surgeon doll is heinous.)

Okay, so Michelangelo is probably not the best sculptor to reference in this post. He was criticized for the way he sculpted breasts, basically that it looked like he’d thrown a couple of softballs on top of a suspiciously manly shaped torso. A better sculptor might be the 20th century artist, Lachaise. That man knew how to sculpt realistic breasts on refreshingly substantial looking women. Hmm. “The Lachaise of La Twins”? I’ll stick with Michelangelo for the alliteration. My cousin, Beth favors Bernini breasts herself. Bernini’s sculptures are absolutely breath taking but the first thing that comes to my mind is “the Rape of Persephone”–not the image I want in my head when thinking about my breast reconstruction. Beth conceded that Bernini tended to show women on the run.  But I present exhibits A, B, and C for your consideration:

One of Lachaise’s fabulous, “Standing Woman” I think this is a clear winner. Unlike “Dawn”, Lachaise’s sculptures of women actual look like a woman modeled for them. Also, Lachaise’s women look like they could fend off a Greek god or random creep in the bushes, unlike Bernini’s stunningly beautiful but nearly defenseless damsels.

Bernini’s Apollo and Daphne. This is Beth’s submission. In this case, Daphne is so desperate to get out of Apollo’s stalkeresque clutches that she turns herself into a tree!

Michelangelo. This is a sculpture I’ve seen in person. It’s from the Tomb of the Medici’s in Florence. This figure is supposed to be “Dawn” Looks like a man named “Don” with softball boobs, am I right?

After a couple of recent inquiries about my physical health, I realized that I have not provided an update for some time. So I will take out a bit of time from my concentration on my emotional and cognitive health (a post about my challenges with attention, organization, and memory is forthcoming) and focus on my medical status.

Medications

I started taking Lupron injections last summer. I now get one every three months and will continue to do so for a total of two years. Lupron “shut down” my ovaries by disrupting the signal between my pituitary gland and my ovaries. So my ovaries think my days of monthly cycles are over and done with. I am currently infertile and functionally in menopause. However, Lupron induced menopause is reversible. Once I stop taking Lupron, I may start my cycles again and go back to being peri-menopausal.

In October, I started taking tamoxifen, another hormone blocker. I will take that for a long time. At the time of my diagnosis, the usual treatment protocol was to take it for 5 years. Subsequent research suggests that 10 years might be better. I’m not going to worry about it because we’ll have more information by the time that decision needs to be made.

Other than those stupid hot flashes, occasional foot cramps, and having to work out harder to maintain a healthy weight, I have been very lucky and tolerated these medications very well. Knock on wood.

Scans

I have an annual diagnostic mammogram and an annual MRI, staggered by six months. I had a “clear” mammogram last January. I will have my next MRI in September, six months after my TRAM surgery. (Recent surgery makes it harder to read the images for MRI.) Both diagnostic mammography and MRI missed three of my four invasive tumors as well as a 6cm area of DCIS. A disadvantage of being “young” (under 50) in the breast cancer world is that our breast tissue tends to be denser because there is  higher water content. The water shows up as white on imaging as does cancer. So it’s hard to know. I have also read measurement research on the sensitivity and specificity of breast imaging techniques. Imaging should get considerably more sensitive as I age. However, the specificity of mammography in particular is not great. As you know, there is a high rate of false positives. But that was not my problem. My problem was of false negatives.

Surgeries and recuperation:

As many of you know, I had seven surgeries between 6/27/12 and 3/11/13. I know I mention this a lot. I also know that it is not a race as in she who gets the most surgeries wins! Let’s just say that one of the reasons I keep mentioning it is because I am still trying to believe it. And I kept my sanity that whole time. And I know that many of you out there have been through similar and even rougher treatment protocols. Let’s pause a second to reflect on our resilience. It’s really rather incredible.

Back to me, sorry, I told you that I was going to write a post about my ever-changing cognitive functioning. I had an appointment with Dr. Welk, my plastic surgeon last Friday. Even though I was feeling good and nothing appeared to be amiss with my healing, I was kind of nervous about the appointment as I had not seen him since April. I am happy to report that nothing appears to be amiss.

I am still slightly swollen from my TRAM surgery, which was 4 1/2 months ago. A significant portion of my sensation has returned to my abdominal area. There are no areas that are totally “dead” to heat, pressure, etc. I intermittently feel those little electrical shock sensations associated with nerve regeneration, especially right after my acupuncture appointments. And then after several hours of on and off shocks, I notice that I have more feeling. I just now read a plastic surgery abstract from a very small study of women post TRAM surgery. A good number of them had at least some sensation return. (Yes, it would be better to read the entire article but the journal was charging $30 for the privilege.) I had not expected any sensation to return and so had not mentioned this issue to Dr. Wang. I will talk to her about it next week when I see her. Perhaps there could be some welcome improvement in the “being able to feel stuff” department.

An unexpected positive is the fact that my abdominal strength is much better than I expected it to be. I had a pedicle TRAM procedure which means that one of my rectus abdominus muscles was sacrificed to create a blood source for the transplanted tissue. Microsurgical procedures can be used to prevent this but I was not enamored with the higher rate of complications and failed surgeries. There is a little bit of controversy regarding the pluses and minuses of these procedures but I am happy with the choice I made.

I am seeing Dr. Welk again in October after my follow-up MRI. I may have another set of plastic surgeries, which Dr. Welk said could be done in one office visit. (Dr. Welk’s time estimates are like dog years so this means two office visits.) The purpose of the procedures would be to improve symmetry between lefty and righty. But at this point, I don’t have to do a thing and Dr. Welk was very clear that this was a perfectly reasonable option. He provided a range of possibilities including doing breast enhancements on each side, which would involve getting a set of implants. For me, this is a big “no, thank you”. He was fine with that.

Healthcare visit schedule:

Currently, I see my breast surgeon every six months, my medical oncologist every three months, my naturopathic oncologist every 4 months, my Chinese medicine physician every two weeks for acupuncture, and my psychologist every two weeks. And I continue to get a full body massage every three weeks, something I have done for nearly 13 years now for stress and chronic pain management. (I had chronic neck pain for twelve years during my 20’s and early 30’s. It went away after two months of massage.) I typically have 1-3 healthcare visits a week, about half of which are across town or in another city. I am very lucky to have such wonderful care. The logistics, however, contribute to a frequently interrupted life and work flow especially on top of parenting duties.

So that’s the state of the union as of today. I will keep you posted and thanks to all for your continued support and concern.

In my last post, Orange Alert, I wrote about another chapter in my complicated relationship with orange. Chapter one involved my unsuccessful attempt color my own gray roots before my mastectomy, since I had to cancel my salon appointment due to my surgery. Some how I thought that having cute hair would buffer the negative impact of losing a breast. Perhaps I was right but since my hair turned out a decidedly not cute Oompa Loompa orange, I will never know.

The second chapter involved two surgeries, the first last September (Wonky Wonka Boob) and the second (Orange River Grafting) in October. As I wrote a couple of days ago, As the orange in question was betadine, which was used as an antiseptic to prepare my skin for surgery.

I was mostly jesting about my fear of orange prior to last weekend when my husband swabbed out ground floor deck with a very orange stain. It was a trauma cue for me and hit me out of the blue.

As a psychologist I know that one of the best ways to keep a trauma cue powerful is to avoid it. (Now, sometimes there are little baby steps and skill building that need to be accomplished before facing a trauma cue head on, but this was not the case for this particular situation.) The deck continues to be orange and I look at it every day. This has helped quite a bit.

I was also thinking about betadine and yes, those orange stains on my skin happened in the course of breast cancer. And breast cancer is bad and scary. And yes, they happened during a period of time during which I was feeling particularly low.

Then I realized that one of the advantages of using an antiseptic that stained my skin is that the OR nurse knew that she had swabbed all of the areas she needed because she could see exactly what she had done.

So the orange in the betadine helped protect me from infection. My orange roots gave me a huge laugh and buffered me from some of the fear of having a breast removed. I loved writing that Willy Wonka post.

So orange, you can stay.

This is the phoenix in my garden. The artist made it out of an old pink flamingo. This is a good kind of orange, the orange of transformation.

This is the phoenix in my garden. The artist made it out of an old pink flamingo. This is a good kind of orange, the orange of rebirth and transformation.

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I’ve written a couple of posts lately about how much things cost ranging from Botox to Lupron to high school year books. My last post was short, a bit flip, and on the humorous side. Shortly after I wrote it, I read this amazing post on Not Down or Out. I complimented Cheryl on her post and much to my surprise, she said it had been partially prompted by my “what things cost”-themed posts!

I’m not saying that I’m never deep because I know that’s not true. But I threw off those posts about costs and didn’t really think about them that deeply. So I started thinking about costs a bit more, relating them to my own cancer experience as well as of those about which I’ve read.

Breast cancer treatment costs a lot. We lose things we would have preferred to keep such as money, time, a sense of safety, taking our health for granted, relationships, a brain that works properly, and last but not least, body parts. We gain things we’d rather not have like nausea, fatigue, weight, neuropathy, hot flashes, aches and pains, and grief. Everybody’s experience is a bit different and for each individual, the experience can change over time.

Putting aside the fact in our lives as tainted test tubes, we don’t know for sure whether each ache or pain or other side effect is really due to cancer treatment. (Okay, I know some of them are pretty obvious, but generally speaking, we don’t always know.) But we do know our current day to day experience and what we like and don’t like about it. And a good number of things that we know about are costs of having cancer and having been treated for cancer.

What we don’t know are the costs of the roads we have not taken. Those of us who had surgery for DCIS will never know if left untreated, whether it would have become invasive or not. And those of use with early stage invasive cancer, don’t know what our outcomes would be if we’d foregone all or a portion of treatment. Finally, those of us with metastatic disease will never know if we chose the right balance between strategies to extend life verses those that preserve quality of life.

Instead, we must make decisions based on our understanding of research on assessment and treatment of our particular diseases, our other risk and protective factors, our personalities, what is important to each of us, and what is not important to each of us. And we must try to make well-reasoned decisions, accounting for all of these factors, while under incredible life stress. Not to mention the fact that we all have people who love us and depend on us. There are costs to family members and friends. As my friend Nancy says, “This disease has tentacles.”

And how many assessment and treatment decisions have each of us made in our experience with cancer? Tons, right? This means there are many paths not traveled. To really understand the costs of our decisions, we would need to be able to live many lives, each based on a different set of decisions.

We’ll never really know because each of us have just one life to live. I often write about my own decisions, “I made the best decisions I could based on the information I had at the time.” It may sound kind of nerdy but it frees me from a good deal of “what if” kind of thinking. I try not to dwell on the costs of the roads I didn’t take. I will never know what they are and to do so would have me walking in circles instead of pursuing the path I chose.

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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.

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.

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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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