Archives for posts with tag: coping with breast cancer

As you know, I frequently write about my husband and our marriage in this blog. John reads all of my posts and I am very grateful to him for supporting the level of personal information I share about our lives. He’s never expressed hurt or anger with anything with anything I’ve written. He did disagree with something I wrote about myself, namely when I referred to myself as a “drama queen”. John told me that I was an “anti-drama queen” and that this is actually somewhat annoying to him at times. Although I was happy to hear that my husband views me as having good emotion management skills, I was kind of shocked.  I was so shocked that I actually asked him to tell me what he thought a “drama queen” was just to make sure we talking about the same thing. And we were talking about the same thing except when I gave him the example of losing my cool when I come home to a sink full of dishes that he was supposed to do days earlier, he said this was “nagging” rather than being a “drama queen”. Okay, I can work with that. So I’m not exactly Spock. I’m a Spock who also nags on occasion.

When I was first diagnosed with breast cancer, I read a number of memoirs of other women who have had it. The most helpful of them was one that was written by a woman and her husband, both of whom are professional authors. It was clear that they had a loving marriage. It was also clear that cancer had thrown their lives upside down. Their stories were told in tandem with each set of chapters written about the same time period but from their different perspectives.

Yesterday I remembered that book. I asked John if he would write a guest post for my blog. We discussed a few ideas and he indicated that he was interested and that he wanted to think about what to write. I think he will do it and I’m pretty excited about it. My husband and I met in a writing class at the University of Washington. We both love to write. When I first met him, I thought he was an English major and was surprised that he was getting a computer science degree. Both he and I took a number of creative writing classes in college, though not the same ones. John’s mother is a published poet who founded a writing conference in eastern Washington state that ran for several years. John still writes poetry and occasionally gives readings at local coffee shops. A few years ago, he and his friend, Rex had a booth at Artopia, one of the Seattle neighborhood arts festival. I thought the idea of a poetry booth was a little crazy given the venue and especially since they were planning to write lines of their poetry ON PEOPLE.  They had tons of multi-colored markers. Rex had also made stencils of lines from some of his poems and was using paint to apply those. Their booth was actually pretty popular. I had totally forgotten about how this fit nicely into the tattoo scene, which is very big in Seattle. And then at one point, the line for face-painting really long and a number of moms successfully convinced them to draw butterflies, flowers, and dolphins on kids’ cheeks. And yes, I had my husband write on me. John wrote a line from a love poem he’d written for me on my upper arm. It was a fun day.

I am hoping that he will write something soon and I don’t have to Spock nag him too much. 😉

Stay tuned.

P.S. For those of you keeping score at home, his work situation has improved somewhat and more importantly, he is taking off both Thanksgiving and Christmas weeks!

I love to cook. And sometimes I even entertain large groups of people. Hmm, what large group of people might I know? Oh yes, my extended family!

My parents got married on 11/25/1954. That was also Thanksgiving day. They had Thanksgiving dinner for all of their guests. There were a lot of guests.

2004 was my parents’ 50th wedding anniversary. It landed on Thanksgiving that year. They had one request, “We don’t want to host or cook on our 50th anniversary.” So I told them that I would take over that responsibility for not only 2004 but for the years following. And I did just what I promised for seven years.

In 2012 I was diagnosed with breast cancer. And in November of 2012, I took my parents up on their offer to host Thanksgiving again JUST FOR THAT YEAR. It was a wonderful celebration and I so appreciated their generosity.

It is now 2013. I am really excited about taking Thanksgiving back! I have so much for which to be thankful. And as an extra added bonus, Thanksgiving is late this year, which means that it is not so close to my birthday, as it normally is.

I have started reviewing recipes. I have started thinking about baking fruit pies. I am not much of a dessert baker except for two things. I make excellent fruit pies as well as a mighty fine chocolate cookie. My mom is more of a sweets maker. I am into savory. I make turkey with cognac gravy. Mashed potatoes with caramelized shallots. I make Brussels sprouts that make cabbage haters weep with joy. (Okay, SLIGHT exaggeration. My sprouts are darned good.) My stuffing is so good and this will be the first year that I will have to skip it because of the whole wheat allergy thing.

My mom has emailed me, not once but twice, suggesting that she take over Thanksgiving for this year. My mom is not a control freak. She is sincerely trying to be helpful. The first time she asked, I thought she had read my post about financial stresses related to breast cancer treatment. She had not read it and I just told her that I appreciated the offer but that I was really looking forward to putting on Thanksgiving this year.

Then Mom actually did read the post and asked again, if it would make more sense for her to host Thanksgiving. I again, gave a gracious, “no thank you.”

I really want to host Thanksgiving. Mom, if you start worrying again, look at the title of this post! xoxoxo.

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Today, my brain feels pretty functional and I feel calm despite the fact that I still have a number of unknowns in my life including the results of my MRI from last Friday. I spent a good 2-3 weeks up until last Friday on a roller coaster of anxiety. I can’t remember if it was Wednesday or Thursday of last week but on one of those days I was a mess for a few hours. I was so worried about my MRI and the prospect of going through cancer treatment all over again. I have had plenty of sadness and fear. This was different than in times past. As I have written, I have felt storms of emotion at different times during the past 1 1/2 years. But at my core there was a sense of peace and calm.

How was my core different this time? In addition to the stress around the MRI being scheduled, then cancelled, then rescheduled (I hate that kind of stuff), about a week or two into that whole mess, my energy dipped precipitously. I was really really fatigued. Like everyone else, I have a low energy day every once in awhile. But I had several in a row. And the fatigue felt different to me, it was the kind that can pull me down into very sad places. This scared me. Anxiety followed by prolonged fatigue is how my depression has started in the past. And I have had periods of time, especially in the winter when I experience this fatigue and although I can never be certain, it feels like the start of a depressive episode that never happens because I am able to fight it off with my medication and cognitive therapy techniques.

I have not had clinical depression in over 10 years but it has been a strong concern of mine that I would have a recurrence due to the stress of being a cancer patient. So I was really scared last week and although I talked to a few people about the fears I had about cancer recurrence, I told no one, not even my husband, about my fear of being depressed again. I felt isolated, lonely and guilty about being a very needy person. I was still able to work and behave with a semblance of normalcy when it was very important that I did so.

By Thursday night, I started feeling significantly less stressed. I had gotten the core of peace and serenity back even though I was still distressed. But I wasn’t entirely back to whatever “normal” is these days. My emotional states change so much more frequently and intensely than they used to and I understand why they do. I can live with the “normal crazy” of cancer treatment. I am still myself but in technicolor. When I am depressed I am not myself. There are some people who have persistent depression, which tends to be a steady, low level misery.

In contrast, when I’ve gotten depressed, it has been acute and more severe. I fell into a very scary, powerless, and hopeless chasm, into a world where I could act like myself for some periods of time but it was acting. And I didn’t feel like myself at all. The first time it happened, I kept thinking that if I just kept problem solving, it would go away. So I let my untreated depression go on for some time. The second time it happened, I recognized it within a week or two and thought, “Oh no, we’re not doing this again” and got myself back to see a psychologist and my internist within a week and my symptoms started subsiding very quickly, within a couple of weeks.

Now that I’m writing this, I am realizing that I handled that last episode pretty well. And I am also still seeing a psychologist every month, not to mention all of the healthy things I do that are good for both physical and mental health. Depression, you are not welcome, but if you come anyway, I can deal with you, too.

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Several years ago, I read John Robison’s autobiography, Look Me in the Eye: My Life with Asperger’s. Asperger’s is an autism spectrum disorder and without going into great detail, one of the main difficulties for individuals with this pattern of brain development is to make positive social connections with others. People with Asperger’s also typically have narrow interests, which can contribute to unusually well developed specific abilities. It is an excellent book and I love his story of transformation. John Robison is a successful businessman. Although he never graduated from high school, in the 70’s, he worked for the heavy metal band, KISS, designing their fire breathing and rocket launching guitars. He also worked designing electronic toys for Milton Bradley.

Robison was not diagnosed with Asperger’s until 16 years ago at age 40. As he got older, he gradually improved his abilities to form meaningful social connections, to make eye contact, to demonstrate empathy and perspective taking, and to have a more integrated flow of emotional, behavioral, and cognitive functioning. He remarried and found lasting love. But there were trade-offs to his transformation. Robison could no longer understand the technical designs he had previously made. Robison’s brain was able to function less narrowly which meant that he could no longer focus such a large proportion of his mental energy on his complex pyrotechnic designs. If memory serves, I believe he was happy with the trade off.

As I have written in the past, I have experienced changes in my cognition since my cancer diagnosis. Although overall, things have improved, I still have concentration difficulties and difficulties integrating information and making simple conclusions. It doesn’t happen all of the time but every so often I find myself thinking, “D’uh!” The most persistent difficulties have been with my writing mechanics. It’s not like I never made errors before because I did. But I make so many more spelling, grammatical, syntax, and punctuation errors than I used to. Sometimes I think of a word and write down something else entirely. That is a new problem. I don’t remember doing that before. It is a language processing problem and I don’t like it at all.

My writing errors have caused me variable amounts of frustration and embarrassment. However, it has not gotten in the way of my posting in my blog, anyway. The objective part of me figures that I am not a professional writer and should not hold myself to that standard. Additionally, I think I have interesting things to write and a number of people seem to like to read my blog. Finally, carefully combing through my writing for errors frankly requires more brain energy than I can spare right now. My job requires intent concentration and I just don’t have much left by the time I write my posts. Any that’s leftover really needs to go to having conversations with my family, which was something that was hard for awhile from a concentration perspective. I still have trouble following the train of thought for my husband and daughter at times. Neither of them consistently use topic sentences in their oral language. My husband often leaves the point of what he is saying until the end of a several minute explanation. In my current mind space, especially after a work day, I feel that my brain may explode. I need clues to organize what he is saying. Is it good news or bad news? Is he telling me about the status of a work project (so hard for me to follow as I am not an engineer) because he just wants to share about what he is doing or because he is going to tell me that he has to work late tonight? I feel frustrated with my brain for not being there for him as much as I’d like to be. I also sometimes get frustrated with his communication style.

I saw the book, Look Me in the Eye on my coffee table yesterday. I’d taken it off of the bookshelf to give it to one of John’s coworkers, who used to design pyrotechnics for Billy Idol. I figured he’d get a kick out of reading it. But he either forgot to bring it with him or didn’t want it because it was still on the coffee table after he left our house. When I looked at the book I remembered John Robison’s trade off and saw a parallel in my own life.

I may never get back my consistent attention to detail or all of those thinking skills on which I used to be able to rely. But I have much less anxiety and a lot more meaning in my life. I have a more interesting life. I have a lot more fun. I’d say that this trade has worked in my favor.

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Last night I watched an episode of the Colbert Report with my family, which included an interview of Billie Jean King, the now retired American tennis champion who won 39 Grand Slam titles over the course of her tennis career. During the interview, she recounted her 1973 match against Bobby Riggs, a then 55 year-old retired tennis player. King was 29 years old at the time and would not retire for another 10 years. The match was incredibly hyped in the media and dubbed the Battle of the Sexes. Billie Jean King won handily and at the end of the match, Riggs jumped over the net to shake her hand and said, “I underestimated you.” King told Colbert that her first thought was, ‘I need to tell my dad about this. He always told me, “Never underestimate your opponent”.’

I have been working on an opponent, my own anxiety over the summer. And I was feeling on top of the world, having successfully faced a number of fears in addition to almost living a normal life. My sudden anxiety with my MRI caught me by surprise and sent me into a roil of negative emotions for a couple of days. I had not been thinking about the opponent, cancer, as much as I had been previously. I mean, yes, not a single day has gone by since 5/25/12 when I haven’t thought about breast cancer. And I recently met a Hodgkin’s Lymphoma survivor who told me that he stopped thinking about cancer every day after about 10 years. But the layer of terror, which subsided to consistent emotional anxiety, had given away to occasional thoughts, many of them as neutral as a thought can be that contains the word, “cancer.”

As you know, I wrote about my tailspin in a couple of posts, first Restless, followed by the Zoo. As usual, I got a great deal of support in the comments section. Karen Sutherland, a fellow breast cancer survivor, wrote a long comment that extended the thoughts and feelings I expressed in my post, bringing them full circle. Karen wrote about how the scans remind us of how life can “suddenly change on a dime” just when we are feeling back to “normal”. And then she went on to say the following (Note: Mom, there are f-bombs here but they are not gratuitous as we are talking about cancer):

I think that if we can dig deep into what all within ourselves we’ve been able to have changed for the better, and drag it up alongside ourselves and hold onto it – tight – and tell ourselves that no matter what, it’s all still there, a part of us to help gird ourselves in darker hours, it may be a way to say to that fucking cancer – hey, you sneaky bastard, you may have gotten a hold on my life and tried to get me into your strangle hold, but look at me now. I am wiser, I’ve been there and done that, I know what’s more important than you, and I am stronger than I ever knew I could be. and I am determined, even if a little shaky at first blush. and I WILL NOT lose any part of it to YOU. nope, not gonna happen. I am not as vulnerable as I was to the pain and fear you inflicted – and I got people, a whole posse surrounding me, loving and encouraging me 24/7. and guess what – that love, empathy, compassion, understanding, deep caring, and concern from all my family and friends – that’s what makes me who I am. so get over yourself, cancer – it’s not you who will define me, nor make me laugh, feel intense gratitude, and super-human strength just when I need it most.

Karen reminded me of the strength of my support system and the strength of my identity. Cancer is a formidable opponent. It is big and hidden and deadly and terrifying. I think none of us underestimate it and for many people, it still connotes an automatic death sentence, despite advances in assessment and treatment as well as the fact that cancer is a group of many different diseases. Sometimes it is hard to turn away from the opponent, especially when we’re going along having a normal-ish life and find ourselves blindsided with reminders of what could have been and what could still be. And we might even respond to that sneak attack by being more anxious and vigilant to the point that the fear of cancer takes on an entity of its own.

I have a list of self-statements that I keep on file in my brain that have helped me cope with obstacles in my life, statements like, “Almost every problem has a solution”, “Don’t borrow worry”, and “patience, persistence, peace.” I am adding another statement to my list:

Never underestimate your team.

I got a call a few minutes ago from the diagnostic imaging lab where I am scheduled to have an MRI on Thursday. Actually, where I WAS scheduled to have an MRI on Thursday. My insurance has denied the scan. My medical oncologist is appealing the denial, which will likely take some weeks to resolve. (Paying out of pocket would be $2000. Yuck.) I guess my Facebook tirade about insurance was prescient.

I am also not supposed to have an MRI within six months of having a surgery. So this means that I need to cancel my follow up appointment with my plastic surgeon to discuss next steps, if any, in my reconstruction. He told me that there’s no hurry and so it’s not a big deal except that I would have liked to put the Big Book of Surgeries away for awhile.

“Hurry up and wait” has been a large part of my breast cancer and treatment experience. And I’ve been spared this for awhile. The timing, given my overwhelming swirl of emotions is not good. I did not worry like this about my follow up mammogram last February. Then again, MRI’s in and of themselves are nerve-wracking. I’d much opt to get my breasts panini’d even in a PEM scan where each photo takes 7 minutes. (Yes, the squishy plates are in place for that long each time but gratefully not as tightly as we would all pass out. The whole thing takes about three hours. And you can’t eat any kind of sugar for 24 hours, which eliminates most foods. Okay, I change my mind. I would rather have an MRI.)

Thank you all for your kind support and encouragement. I am saving them for later.

In the meantime, I’m breathing and setting out for another walk.

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 (


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