Archives for posts with tag: Breast Cancer

Protected: Where do I put this?

September 25, 2013 //

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Tags Breast Cancer, coping with breast cancer, fear of recurrence

Categories Feelings, Mindfulness, Parenting

Protected: Reminders

September 22, 2013 //

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Tags Breast Cancer, coping with breast cancer, mindfulness, thinking about breast cancer

Categories Feelings, Mindfulness

Trade Offs

September 19, 2013 //

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.

Tags Breast Cancer, breast cancer and cognitive decline, concentration, coping with breast cancer, executive functions, life satisfaction, stress, writing

Categories Feelings, Mindfulness

Protected: Too Much, Too Little, Just Right

September 17, 2013 //

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Tags blogging, Breast Cancer, coping with breast cancer

Categories Feelings, Mindfulness

Never underestimate your opponent

September 13, 2013 //

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.

Tags Billie Jean King, Bobby Riggs, Breast Cancer, coping with breast cancer, positive self-talk, social support for cancer patients

Categories Feelings

All undressed and no where to go

September 10, 2013 //

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.

Tags Breast Cancer, coping with breast cancer, insurance, MRI

Categories Facts, Feelings

Protected: The Zoo

September 9, 2013 //

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Tags Breast Cancer, Coping with cancer, grief, Nature

Categories Feelings, Flora and Fauna, Mindfulness

Restless

September 9, 2013 //

I probably didn’t sleep quite as well as I remember but boy, did it seem like I used to be an A+ sleeper before my cancer diagnosis. And then as I managed the shock of my diagnosis and subsequent surgeries, I’ve had to adapt to the side effects of medications that have put me into menopause until fall 2014, at least. Hot flashes and night sweats interfere with sleep as many of you know firsthand.

One of my female relatives has told me that my time of having quality sleep is over because I am menopausal. But I know what sleep does for me emotionally, physically, and cognitively. So I went on a multi-pronged attack against my insomnia, combining sleep hygiene (a real thing), meditation, behavioral techniques, nutritional supplements (magnesium and melatonin) and acupuncture. For awhile there I got almost back to normal except that I have chronic difficulty with early morning awakening though I am usually able to get back to sleep.

My insomnia over the past 17 months has come in waves. It ebbs and flows. It has troughs and crests. Peaks and valleys. Oh I am stuck in a circle of trite metaphors. And why is this? What is the reason for my perseverative triteness?

I am soooo tired!!! That’s why!!! I remember being in bed last night and feeling that wired feeling I used to get when I drank coffee too late in the day. An exhausted body and a brain that is all buzzy and addled. I remember being awake A LOT but I must have slept because time, somehow passed.

I have an MRI on Thursday. It is my first follow-up MRI since May of 2012 when I was originally diagnosed. I have been trying not to worry about it and mostly, I have succeeded. Well, I succeeded until last night. Now I am thinking about the ramifications of the information that will be gleaned from that scan.

There are four outcomes in any diagnostic procedure: (1) true positive (evidence of disease and it is actually there), (2) true negative (no evidence of disease and there is actually no disease), (3) false positive (false evidence of disease), or (4) false negative (there is disease and the test missed it.)

Unfortunately, we only know if the test is positive or negative and not whether it is true or false. The biggest problem in the assessment of my breast cancer has been that of false negatives. A routine screening mammogram picked up 1 of the 4 invasive tumors I had in my right breast. A diagnostic mammogram, ultrasound, MRI, and core biopsy confirmed that there was an invasive tumor. However, the MRI missed the 6 cm of DCIS and although mammography and ultrasound are not particularly sensitive to DCIS, MRI is. And putting aside the issue of whether DCIS is really cancer or not or whether it should be treated, I would have liked to have known that it was there using assessment measures less invasive than three surgeries.

I know that a lot of people complain about limitations in mammography in screening for and diagnosing breast cancer. And it would be easy to take my experience and just say, “Well yeah, mammography sucks!” My situation, however, is a bit different. The biggest complaint about mammography is that although it has high sensitivity (it has a high hit rate of detecting an invasive cancer if it is there), it has low specificity (it has a high false positive rate.) By definition, tests with high sensitivity have a low rate of false negatives. But I had many diagnostic mammograms and they missed a significant amount of cancer that “should” have been picked up. I also had multiple ultrasounds, an MRI, and even a PEM scan, for which there is mounting evidence that it is the best technique for women such as myself, who have more difficult tissue to read using the other methods because 1) I had dense breast tissue (premenopausal women have a higher proportion of water in their tissue, which shows up as white on scans, the same color as cancer) and 2) I had relatively slow growing tumors. More aggressive tumors are easier to spot because they produce calcifications, which in turn, are easier to spot on scans.

The good news about my induced menopause as well as the natural menopause that is on its way, is that the tissue density issue will improve, as fatty tissue increases. So diagnostic scanning techniques should improve for me as I age. In the mean time, I have to rely on the research I read prior to deciding whether I would have a unilateral or bilateral mastectomy. You see if I have breast cancer again it is much more likely to be in my left breast than in my right because the right breast was removed and replaced. (A risk of metastatic cancer is also a possibility and I am trying really hard not to borrow worry on that right now.) I looked at research on contralateral occult cancer (cancer undetected by scans in the opposing breast of an individual with unilateral breast cancer) in women who opted for bilateral mastectomy despite the fact that cancer was detected in only one breast. There were a number of risk factors for contralateral cancer, none of which I had. I looked at the probabilities of having cancer in my left breast both at the time of my initial diagnosis as well as cumulatively in the years to come.

Although my “right” decision may be different than the “right” decision for others, I decided that the risk of keeping my left breast was tolerable for me. I also knew that my systemic treatments, Lupron and tamoxifen, might address any occult cancer that might be present. And I also took into account that 25% of invasive breast cancer tumors don’t develop into dangerous disease. For example, some invasive cancers lose blood supply and just stop growing. (This is the issue of “overdiagnosis” that has been all over the Internet of late. I knew about it at the time of my diagnosis because I have a close friend who is a cancer researcher at Rutgers. She sent me a research article.)

I am praying for a “no evidence of disease” result on Thursday. But I also know that what I am hoping for is an ambiguous result. In the quest for black and white, a true positive result followed up by a positive core biopsy would be a clearer result. With the question, “is there cancer or not”, it’s a pretty clear answer. Obviously, there’s lots of gray still but relatively speaking, it is the clearest finding. And it is not the one for which I am praying.

I know I will cope with this. Something I have learned about myself is that I have become very good at coping with a sea of gray. In the meantime, I expect to get very familiar with the sounds, thoughts, and scenes, which are experienced only in the middle of the night and in the wee hours of the morning.

Tags Breast Cancer, contralateral breast cancer, fears of recurrence, mammography, measurement sensitivity, measurement specificity, MRI, occult breast cancer

Categories Feelings

The skin I’m in

September 7, 2013 //

My husband and I were walking the other day. He got hot and took off his shirt. John is a relatively fit man but like a lot of middle-aged men, he has a collection of adipose tissue (fat and other stuff) collected in the “beer belly zone”.

John’s father had his first heart attack in his late thirties and the one that he had at age 49 killed him. John is 48 years old and although he lives a very different lifestyle than did his father, I still worry. He has high cholesterol, which is controlled with a statin drug. But his trigylcerides are high again and his blood pressure, although still in the acceptable range, has been steadily climbing.

So the belly bothers me. It’s not as big as it was a year or two ago but it’s still there. Talking to a spouse about health concerns especially when it could also be interpreted as a criticism of physical attractiveness, is tricky. But it is really important that both John and I be as healthy as possible, especially now that we are painfully aware that physical health is not a guarantee.

I said, “John, I’m thinking that you need to do something about the fat you have around your mid-section.”

He said, nonplussed and gesturing like Vanna White over his physique, “My stomach? Look at me! I’m almost 50! I look damn good! But I am a man and we all think we look great.”

I don’t think all men think they look great. But John is one of the least physically self-conscious people that I know. He is perfectly comfortable with his body and honestly, he is quite a good looking man. And because he is not self-conscious, he won’t mind me saying that in college, he was perhaps one of the least stylish men I’d ever met. John wore incredibly thick glasses and the arms were attached with paperclips. He cut his own hair when I met him with kitchen shears, just enough to keep it out of his eyes. John’s shirts often had holes in them. But he was kind, funny, bright, studious, and comfortable in his own skin. These qualities were extremely attractive.

I admire John’s ease with himself. He is a 48 year-old man who has felt comfortable in his own skin for 48 years. I was 5 years-old when I first thought there was something wrong with my body. We were looking through recent vacation photos and there was one of me wearing a navy blue one piece bathing suit. At least two of my five brothers immediately started teasing me for being “fat”. I’ve been pretty open in my blog about my history of weight problems but I don’t think I was actually overweight until I was 12 or 13 years old, after which I lost over 20 pounds, grew, and maintained a healthy weight until I was 24 years old, at which time my up and down weight battle began. In any event, I wasn’t the slightest bit overweight as a 5 year-old!

I have struggled with body image for most of my life. And I’m not blaming my brothers but they were a layer in the onion of negative messages I received. There is a lot of pressure on girls to be unrealistically thin in our country. To be unhealthy is to be beautiful. I’ve always known this to be wrong. I was a reasonable and intelligent girl who grew up to be a reasonable and intelligent woman.

As I’ve written in the past, there was a tape that played in my head when I was overweight. As soon as I woke each morning, I felt the extra weight on my side and noticed how much closer the outline of my body was to the edge of the bed. I thought, “I’m fat.” Every morning of every day, on and off, for YEARS. And when I went out into a public place with crowds, I would compare myself to the people around me, “fatter than her”, “fatter than him”, etc. It was like a horrible, horrible tic. I knew how unhealthy it was. At times in my adult life when I’ve been at healthy weight, the tape has positive information but it is focused on weight and comparing myself to others. I knew that although a more comfortable state, it was still the trap of depending on my weight for a significant segment of my self-image. And I also knew that no matter whether I’ve been at healthy weight or not, I’ve avoided lots and lots and lots of opportunities to swim in my life because I felt uncomfortable wearing a swim suit. And people, I was an athletic girl. I even won the 8th grade award for physical education.

A few days after my breast cancer diagnosis, I gave myself a hard look. I had started back on Weight Watchers a few weeks earlier and people were asking why I would continue given that I had just learned that I had cancer. But I had already started to lose weight and from experience I know that there is a certain groove that is hard to find but once found, goals get achieved. I was pretty sure I was in that groove. Additionally, I thought it was a concrete thing I could do to improve my health at a time when I was feeling pretty out of control of my life. I decided to press on and wrote about this decision as well as my keen sense of embarrassment that a grown woman who was a generally happy person would have an evil tape playing in her head every day. I remember thinking for the first time that perhaps I needed to give myself a break for not being a perfectly self-accepting person and maybe the tape was something I just needed to accept about myself.

That bit of acknowledgement and acceptance was an important step in dealing with that negative tape. I focused on making good decisions in my cancer treatment and living a healthy lifestyle. I kept on Weight Watchers, I started mindfulness practice, and started exercising every day. I exercise by walking between 3 and 4 miles each day. I go out to walk with extremely few exceptions, every day, rain or shine. I walk in the winter when it’s dark (darn you, northern latitudes), cold, wet, and windy. I don’t really like to get cold or wet so I was kind of worried that I wouldn’t be able to keep up my walking during all seasons of the year.

I was able to keep it up and I discovered something about walking in the cold, the rain, and in the wind. I could do it and if I wore good gear, it could actually be relatively comfortable. It felt powerful to be vulnerable in the elements and to still have a good time. There’s ALWAYS some interesting life out there, the birds, the trees, the flowers. Bracing wind can bite but it can also be invigorating and as I’ve learned, it can also be the best medicine for an intense hot flash!

Admitting the existence of my negative body image tape was hard and embarrassing. But it was a confession that lifted something for me because it was no longer something that was too horrible to mention. Similarly, I admitted to a friend over a month ago that I was terrified of wearing a swim suit in public. It was a painful admission and I actually felt somewhat embarrassed and regretful afterwards about having made that disclosure. But I think just speaking it aloud wiggled something loose for me.

Meanwhile, the weather was getting hot and I didn’t want to bake on my walks. So I bought a jogging bra and shorts for my summer walking. I also thought it would be a good way to work on the body image project. Although I could deal with the shorts, having my midriff exposed was a little, EXPOSED. So I wore a t-shirt over it and got pretty hot on my walks. Then remember when I went hiking in the mountains? It was supposed to be cold that day so I was wearing a long-sleeved sports dress (there really are such things) over a sports bra and capri jogging tights. In the sun, high altitude, and my cancer-treatment induced prone to hotness, I soon got overheated. I debated for awhile but then thought, “Who would know me up here?” So the dress came off, my midriff was exposed, and guess what? Nobody died. Now I admit that it was a bit awkward given that everybody else appeared to have a normal thermostat and none of them looked over heated. In fact, some people were wearing stocking caps! So I was much more skimpily dressed than the rest of the people I encountered on the mountain trails. But again, NOBODY DIED, GAGGED, OR PASSED OUT.

Midriff in the mountains. Yes, my belly button is no longer round due to TRAM surgery. I kind of like the new shape.

Then it just got too hot on my daily walks and I found myself stripped down to a jogging bra and shorts about a third of the way through my neighborhood walks. Just prior to my recent vacation, I realized that I was parading around the neighborhood in front of God and everybody, wearing something equivalent to one of the spicier Land’s End two piece swim suits for middle aged ladies. (And even the young girls frequently wear board shorts instead of bikini bottoms these days.) I realized that my problem was not with how much skin was covered. It was the negative associations I’d had with wearing a swimsuit or even the idea of wearing one, in the past. And by the way, in the course of my walks around my neighborhood, NOBODY DIED, GAGGED, OR PASSED OUT.

I decided that during my vacation, I would wear a swimsuit at least once. I wore a swimsuit twice with no adverse effects. In fact the 20-ish year old kid who rented me a kayak told me that I should jump off the bridge at the other side of the lake. Apparently, I was was looking confident enough in my attire to jump off of a bridge! Woo hoo! Spring break! Middle-aged lady gone wild wears swim suit while exhibiting good posture and providing no apologies. (I did actual consider the bridge jump briefly, remembered my fear of heights as well as my research training, and concluded that this would be manipulating too many anxiety variables at once.)

Last Sunday was another chance for me to work on this swim suit issue because we went to the water park with crowds of people. God was going to be there, too. But the roller coasters had turned out to be much easier than I expected, I was proud of myself, and pumped to expand the bubble of my comfort zone. I did it! I was in public, in a swim suit for hours. We actually bumped into one of John’s co-workers from Disney. Neither he nor anyone else at the park, DIED, GAGGED, OR PASSED OUT. It ended up being a lot easier than the Gordian knot I had envisioned in my head.

There were a lot of people at that park of various shapes and sizes not to mention taste level when it comes to swim attire. I found that the longer I was there, the less comparing I did. About midway through my time there, I looked around and the words that came to my mind in looking at the people around me were, “We are all God’s children.”

My life is really good right now. I am happier than I was before. I have a great deal of peace and joy in my life. And even with the waves of grief I have, there is calm and hope, too. The skin I’m in has a lot of scars, but they are fading.

I looked into the mirror this morning. The woman I saw looked healthy, happy, and like she had a few good stories to tell. Health is beautiful. Life is beautiful.