Archives for posts with tag: Breast Cancer

Repost: At the bottom of the pig pile

April 10, 2015 //

It is National Siblings Day so I am reposting this one from November 2012 about my younger brother and me.

I have mentioned perhaps one or six hundred times that I have five brothers. One of my older brothers’ favorite “games” was pig pile. This involved announcing a victim and then having five siblings tackle and pile atop this person. For example the exclamation, “Pig pile on Liz!” was followed by my being tackled and piled on by five brothers, the oldest of whom was nearly 10 years my senior.

Pig piles seemed to be exclaimed on a very frequent basis and as the only girl of six children and the second to youngest it seemed that I was more often than not, the vortex to which the pile was attracted. A Bermuda Triangle of porcine piling, if you will. As the “baby” of the family, my brother James also spent a fair amount of time face planted on the living room floor beneath four sets of sprawling limbs shod in Converse low tops of various sizes.

Although our older brothers would admit to the pig piling, they would disagree with the metaphorical implications. They believed James and me to be spoiled. We avoided the horrors of ruler wielding nuns, whereas they all attended St. Anthony’s School, for example. Our family also had a little more money when I was growing up, not a lot more but just enough to fuel the “you’re spoiled” flames. I maintain that whatever advantages we may have had were more than offset by their mean older brother shenanigans.

James and I are only 18 months apart in age. Our next oldest sibling, John is 3 ½ years older than me and 3 ½ years younger than our next oldest brother, Mike. John was kind of caught between the “big boys” and the “little kids” of the family.

James and I spent a lot of time together. We played together a lot. We mostly got along very well though we could sometimes fight verbally and physically at which time my mom would yell, “I don’t care who started it. I’m finishing it. Go to your respective rooms!”

We played a combination of traditional boy and girl activities. We played with cars, trucks, and climbed trees. We designed obstacle courses in the yard and spent hours upon hours in the woods surrounding our house and neighborhood. We did not, however, play with Barbies or baby dolls. Remember, this was the late 60’s and early 70’s. My mom made us each two sets of Raggedy Ann and Andy dolls as well as a bunch of stuffed elephants. Due to her combination of genius and industry, we were able to play dramatic reenactments of family life with more socially acceptable dolls.

James was not really interested in formal music training, but he has an incredible ear and natural musical ability. He is also extremely funny. By the time I got to high school, I was pretty serious in my classical flute playing. He had a plastic slide whistle and would frequently copy whatever piece I was practicing in my room, complete with vibrato and when era appropriate, Baroque runs. When it wasn’t infuriating, it was hilarious.

These days my brother plays more music than me; he taught himself drums and plays with his 17 year-old son’s band. The only music we make together is the occasional game of Rock Band. The thread that carries over the years is that fact that my brother can always, I mean always, make me laugh.

He reminded me of this last Friday. James attended the requiem mass at St. James. I was kind of surprised to see him there since it was a pretty long drive for him and I think he hates to drive even more than I do. We got there an hour early to get a seat. During the time before the mass started, he was cracking me up and my laugh was echoing throughout the cathedral. When we were kids, due to different church rules, we were not allowed to talk before or obviously during mass. So with this as a back drop, his jokes have always been extra hilarious. I’d laugh, he’d say, “Now if any other family is coming tonight, they will be able to find us.” Then I laughed harder than before. Then he started singing family gossip in his version of Gregorian chant. I lost it again. Now here’s the thing about my brother. His antics are not particularly loud. He is actually a fairly introverted person whereas I am loud and gregarious. I believe he very much likes to set me up and watch the loud fireworks of my laughter, knowing that he is the one who lit the fuse.

James and I were successful for decades after our childhood in avoiding the bottom of the pig pile. Then I found out I had breast cancer and it wasn’t my older brothers that piled on top of me, it was the world in which I thought I had lived, that dissolved and crashed down on me. During the acute stage of my breast cancer treatment, there were many ongoing assessments and constant revisions of my treatment plan. When I was recuperating from surgery and bored, meaning prime time for worries to creep in, I called him, “James, I am bored. Tell me something funny.” And he did. And when I was anxious about waiting for the results of oncotype testing, which would determine whether my oncologist would recommend chemotherapy or not, I called my brother, “James, I have 20 minutes until I need to leave for my appointment. Can you tell me funny things and distract me?” And he did.

James does not show affection in traditional ways. I remember once, about ten years ago, his closing a telephone conversation by saying, “It was nice talking to you, Liz.” That was a major outpouring of verbal affection. But I know my brother loves me, thinks about me, and keeps the warmest wishes for my health. And he shows his love to me most consistently by making me laugh about today, laugh about cancer, and laugh about the things we did and experienced as kids.

For these things I will be ever grateful. James, you joined me at the bottom of the cancer pig pile. I can’t thank you enough for doing that. If you didn’t realize it before, please realize it now that you have helped me tremendously. Thank you for making me laugh at some of my lowest and scariest times. I love you a lot and I know you return that even when it may come in the guise of slide whistled Mozart.

James must have been about 1 1/2 years old to my three years. It looks like we were having much fun in a rare Seattle-area snow.

Tags Breast Cancer, coping with breast cancer, Family, Humor, siblings, sisters and brothers.

Categories brothers, Family, Feelings

Lost and Found

April 5, 2015 //

My husband and I moved around a lot during the first several years of our marriage. We were married in 1990 and it was not until 2001 that we bought our first home in Seattle, which is the home in which we still live. This is one of the most expensive cities in the U.S. and we don’t live an ostentatious life style. Consequently, our house is not fancy or stylish. But we love our 1950’s house and have worked to inject it with our own personal style, which is colorful and eclectic.

When we moved into the house, there were flower beds in the back. I spent the first year in the house weeding and seeing what kind of plants there were. There was a grassy front yard, bordered by two huge juniper shrubs. Juniper shrubs were commonly part of the landscaping for homes built in the 1950’s and 1960’s. I imagine that they were cute back then. They get rather prickly and enormous over time. Also, they are really ugly, so ugly that the house had what my brother, a realtor, called, “No curb appeal.” After we’d been in the house for about three years, John removed the shrubs and built a rock wall. The shrubs were weighed at the city dump for the composting program; a half ton of shrub. 1000 pounds of juniper, people!

I planted a rock garden. A year or two later, John removed the front lawn. I covered it in layers of newspaper and cardboard followed by four inches of beautiful black compost that I had delivered to my house, which I carried around the yard by the wheelbarrow full. I didn’t plant anything in the yard for a year to make sure that all of the grass and weed seeds under the paper barrier would not get exposed to light. The following years, I started a long project of putting in flowers, summer vegetables, shrubs, garden art, soaker hoses hooked to an automatic watering timer, and slate walkways.

After the front yard was “done”, I started work on the planting strip, the piece of grass between the sidewalk and the street. This land is owned by the city but the home owner is responsible for upkeep. The city encourages people to make the strip into a garden. We had already planted two trees there, which were given to us by the city as part of their Street Trees program. I got out my garden edger and started the long process of removing sod from the strip. I did it in pieces, removing a small square and filling it with compost and new soil. I planted beans there the first summer. After a year, it was all removed and planted. Right now, it is full of blooming tulips, which I have planted in wet fall weather, my garden gloves filling with cold muddy water.

Until my cancer diagnosis, I spent a great deal of time in my yard, weeding, pruning, and planting. Then I stopped working in my yard, for the most part. I had repeated surgeries that made it hard for my to use my arms and abdomen. I started exercising regularly, which meant less time for gardening and also another way to fulfill my need to spend time outdoors. I had trouble with fatigue. I had friends that came to help. Later, I decided to get rid of the little strip of grass on the left side of the house to open up more planting area. I got about half done with that project and lost steam. It is still unfinished, a year and a half later.

But after years of working out there several times a week during the summer and frequently during the rest of the year, I found out what happens when a yard doesn’t get such regular attention. It’s not pretty. It gets weedy and full of brown stuff. Some plants get out of control and propagate wildly. The rose bushes did not get pruned. One of them got as large as a Volkswagen. It was really overwhelming. I often found myself thinking, “My yard used to be so beautiful. It was so much easier to maintain. Now it is a mess.”

Last spring, I actually hired a landscape service to weed, prune, and mulch the front yard, which is where most of the flowers are. I couldn’t afford for them to work on my back yard, too. I figured that after they did the heavy work, I would be inspired to get back into the yard because it would not be so overwhelming. The landscapers did a great job and I didn’t end up doing anything out there.

This year, I found my yard overgrown once again and myself, once again, thinking, “My yard used to be so pretty. People used to take photos of the flowers in my yard. Sometimes cars would slow down to look at my yard.” I called the landscapers out again. It was not quite as big of a job this year and it made an enormous difference. And this year, unlike last year, I did gather some momentum. I weeded my raised vegetable containers, my husband turned over the soil, and I added compost, fertilizer, and new soil. I transplanted flowers to other containers because they were getting in the way of the vegetables. I replaced broken soaker hoses for the front yard as well as for the vegetable containers. I removed three years of old bean stalks and tomato plants from my two story metal growing cages.

Today, I went back to the yard. I planted lettuce and bok choi seeds in my vegetable containers. They are fast growing and should be finished by the time for planting summer vegetables, beans and tomatoes. I cleared the hair allium that had started out as about eight bulbs and spread into several hundred plants. Waaaaay too much allium. Clearing that out took a couple of hours, working around tree roots and plants I wanted to save. The number of little allium bulbs under the soil was unbelievable. (Hair allium is cool looking and it used to be a moderately expensive plant. My guess is that they are now being giving away at Home Depot check stands. They are worse than bluebells for “naturalizing”, a.k.a. taking over like a hostile alien race from another planet.) After I dug that out, I had to use a couple of bags of soil to replace what I’d removed. When I finished, my yard looked so nice, nicer than it has looked in years.

I came across a random photo of my front yard from my pre-cancer days. It shocked me. My yard looked terrible! Now the fact that I’d taken a photo tells me that it was probably a “before” photo taken for spring clean up. The yard always looks bad for part of the year. My surprise at the photo got me wondering how much I had exaggerated the state of my garden in comparison to the years prior to cancer. “My yard was so beautiful before cancer.”
In truth, it was better maintained in the past and that does make an aesthetic difference. But I think nostalgia and loss has nudged my memory to increase the contrast, closer to, “Before cancer everything was wonderful.”

Truly, there are a lot of losses than come with cancer, and they are losses to grieve and honor. But sometimes I think I may be too quick to interpret “before and after” in a negative way, when I am feeling discouraged, worried, or overwhelmed. I think this is natural for people to do, to think about significant aspects of life from the past with fewer shades of gray. I learned last year with my 30th high school reunion that perhaps my recollection of high school being terrible in certain respects, was not accurate. I suspect that friends who look back at high school with very strong positive feelings and memories, may be forgetting some of the bad aspects. And then of course, there is the whole lamentation of culture and young people, “Kids today…” “Society is going to Hell in a hand basket.” It can be easy to idealize the distant past. It is not clouded with immediacy of the present or the unknown of the future.

I don’t really know how much better or worse my yard is. After all, living things grow and die, regardless of whether we work the soil or not. Things change all around us.

What I do know for sure is that today I dug in the dirt and I had a marvelous time.

My roses in 2012. They will start blooming again soon.

Tags Breast Cancer, Gardening, grief, loss, mindfulness, post-cancer functioning, pre-cancer functioning

Categories Breast cancer, Feelings, Flora and Fauna, Mindfulness

The Good Plates

March 30, 2015 //

My husband and I host Thanksgiving every year and although not at Martha Stewart’s standard, I like to make the dinner tables pretty. Sometimes, John sets the table with our day to day plates and I say, “No, use the good plates.” The “good” plates consists of the full set of Franciscan dinnerware that my mother-in-law generously gave to me years ago. They match. There’s a gravy boat. There are enough for our extended family crew of 16-24 people, depending on the year. Matching, rarely used plates for fancy occasions.

Today I had a mammogram. I scheduled it many months ago. I remember telling my oncologist’s scheduler that I needed a diagnostic mammogram. She called over to the breast imaging center and told me that I didn’t need a diagnostic mammogram. I was due for a screening mammogram. I said, politely with a tinge of anxiety, “But I’ve had breast cancer.” She talked to the imaging center again and verified that a screening mammogram was what my oncologist had ordered.

I walked into the imaging center. It is in a building that adjoins my cancer institute, where I typically have my appointments. The cancer institute also does mammography. This time, I was sent to the building that is part of the same medical center but not part of the cancer center. Even though I’ve been there before, I was disoriented, even in the parking garage. I don’t have the best sense of direction on a good day but when I am nervous AND underground, it is much worse. The parking garage was packed and although I thought I was following the signs, I knew that I was anxious and distracted when I saw the sign, “Alligator” to show me that it was floor A, for the third time. I was driving in circles. I snapped out of it and worked my way down to “Camel” where I got a parking spot, wrote directions to finding my car after my appointment was finished, and went on my way.

As I walked into the waiting room, I had a sense of unreality bordering on derealization, a dissociative state experienced by individuals with PTSD. The waiting room felt unfamiliar but I knew I’d been there. Then I say myself there, in my mind’s eye. This is where I had the diagnostic mammogram, the ultrasound, and the core biopsy that would establish my breast cancer diagnosis and refer me to the cancer center, nearly three years ago. “Hello, trauma cue!” Once I recognized the cue for what it was, I could at least stop wondering and start coping.

The funny thing about this is that one reason I felt uncomfortable and scared was because I had been “demoted” to a screening mammogram and to add insult to injury, had to leave the safe and familiar nest of the cancer center, to do so. Mammography involves compression of the breast tissue between plates. I’ve had all kinds of mammography, screening, diagnostic, and PEM the latter being the fanciest and as it was in Phase II trials back in 2012, was not covered by insurance costing $2000 out of pocket. PEM took three hours following a 24 hour no-sugar diet and radioactive dye injection. Oh, and did I mention that each picture takes 7 minutes, all 7 of which the plates are compressed? Oh yeah, I just remembered that the PEM tech is seated right across from your eyeballs. But I digress.

I found myself in the waiting room thinking, “I want the good plates. I want the diagnostic mammogram.” Yes, I know, the difference between mammogram machines is not the plates. But do you blame me for thinking about the plates? (Ladies who do mammograms understand.) When I checked in, the receptionist asked, “Who do you want us to send the report to?” I provided her with the names of my physicians. Then I anxiously asked, “But I am getting a verbal report from the diagnostic radiologist during my visit today, right?” She verified that I was. Deep breaths, Elizabeth.

I changed into a gown and waited for the mammography technician. She soon greeted me and led me to the exam room. She was a very small woman, under 5 feet. As she was positioning the plates, I noted that she was about the exact right height for the job. She would not have to bend over at all to get a view of breast level for most women. I thought to myself, “Why do I notice things like this?”

She was skilled and efficient. I was lead back to the waiting room near the changing room. I waited. I was distracted for awhile talking to other women, waiting for their results. I answered some email. A woman called my name, a different woman than the mammography technician. I didn’t like this. She led me into an ultrasound room and asked me to partially disrobe, lie down, and wait for the diagnostic radiologist, Dr. Bang. She said, “He will give you the results and discharge you.”

“Uh-oh, there’s something suspicious on the mammogram.” Dr. Bang soon came into the room and introduced himself. He was a young Asian American physician with a nice smile and a professional demeanor. One of the first things he said was, “I see a 2mm mass in your left breast. It is probably a non-malignant cyst.”

My thought, “Yay, he’s being straight with me. He told me what was going on as soon as he could without being cold and abrupt. Hmm, but he also told me that he thought it was likely just a cyst. I hope he’s not one of those physicians who is afraid to tell the bad news. I hope this does not affect his judgment.”

He was very thorough, I must say. I looked at the images from the mammography. Besides thoughts to myself like, “recurrence”, I busied myself by noting how much less dense my breast tissue looked in the images than they had in 2012. As many of you know, having particularly dense breasts makes most of the imaging techniques difficult to interpret because water (the source of density) shows up as white, which is also the color that tumors look on the images. Density is reduced with age, as breasts take on more fatty tissue. I could see this change in myself, likely accelerated by my cancer treatment induced menopause through Lupron and over two years of taking Tamoxifen, which I will likely continue to take for nearly a decade.

I am a geek and a healthcare provider. I am very happy for this when I am getting a stressful medical examination. I can distract myself with wonder and fascination. I also joke with healthcare providers. This lot were pleasant but business like. Joking would not be a comfortable option. So I continued to practice paced breathing to keep myself calmer and to geek out on medical technology and to reflect on the the marvel that is the human body, post-mastectomy and all.

Dr. Bang was having trouble finding the 2mm mass on the ultrasound. I asked him if it was located in the part of my breast tissue that is still very dense. He said that it wasn’t and was in fact very close to the surface. Then I thought, “Oh, if the cancer is near the surface of my breast, maybe I can get a small lumpectomy. That won’t be so bad.”

I was also thinking about what the next step would be. Biopsy? Then I remembered that I had gotten a screening mammogram and that the next step is usually a diagnostic mammogram. However, in this case, I was given an ultrasound. Hmm. A memory flooded back to me. Cancer treatment is like giving birth. They tell you what is going to happen like they are invariable steps. But it’s not. There are rules of thumb that I can understand but the course of assessment and treatment can change. I’m not complaining. If I were cookie dough, the medical team could use cookie cutters to do their job.

Another part of my brain was planning who and how to inform people that I would need follow up assessment. Before, I was pretty sure that I didn’t have cancer. After all, only 20% of biopsies are malignant. Mammography has a notoriously high false positive rate. That is one reason that it is so widely criticized. Actually, the prime reason is that we keep getting the message in our culture that it is far more accurate than it really is.

After what seemed to be 500 years, Dr. Bang told me that the cyst had been present on my last mammogram but it seemed to have grown since then. “I don’t think it’s cancer.” He told me that he wanted to “watch it” and that meant having another mammogram in six months. In the past, I would have been hesitant to ask my “worry questions” but I asked away. “Will this be a diagnostic mammogram?” (“Yes”.). “Will it be a 3D mammogram?” (“Yes”.)

There is no cure for breast cancer. I have had a status of “No Evidence of Disease” since my mastectomy on 8/8/12, which was proceeded by two failed lumpectomies performed by a marvelous and kind surgeon. Three of my four invasive tumors could only be revealed after surgery. None of the imaging technologies, MRI, ultrasound, and three types of mammography that were used, found them.

I was diagnosed nearly three years ago. I have thought about cancer every single day since I was informed of the diagnosis. That is over 1000 days. I don’t want “the good plates”. I wanted the black and white plates. I want the plates of definite “I don’t have cancer” answers.

Cancer has provided me with a daily lesson that bad things, really bad things can happen. And I have learned to live a happy and satisfying life in the last three years despite all that my family has been through, a significant amount that has nothing to do with my cancer. Something that a pathologist looks for in examining an excised tumor and the surrounding tissue is for “clear margins”. A clear margin is the amount of healthy tissue that surrounds the tumor. Larger margins are better than small ones and if they are too small, as was the case with my first two surgeries, more surgery is recommended.

The “clear margin” is not magical or 100% accurate but it is meaningful. It is more than a good sign. There is always the possibility of disaster or hurt at the center of our hearts. I try very hard to live in the present and at present my margins are clear.

Tags Breast Cancer, fear of cancer recurrence, mammography, mindfulness, Scanxiety, trauma cues

Categories Breast cancer, coping with humor, Family, Feelings, Marriage, Mindfulness

Not what I’d hoped for

March 28, 2015 //

When I practice mindfulness, I encounter a paradox of experiencing a greater connectedness with thoughts, feelings, and sensations but also having some kind of buffer. I don’t really know how to describe it exactly. It’s not exactly a distance but it kind of is. No doubt there are individuals far more practiced in mindfulness who have written about this much more precisely and eloquently. I know that the word, “equanimity” is often used to describe this state, a mental composure that wards against imbalance of the mind.

Yesterday morning I was walking and noticing. I do most of my mindfulness practices while I walk. I also do a great deal of contemplation about my life. I was thinking about how much more fun I am having with my family these days and the level of harmony we’ve been experiencing. The sun was out and I could feel it on my skin. The flowers and trees in the neighborhood were beautiful. I felt a great deal of joy. In these times of mindfulness I find that I encounter unexpected thoughts and feelings. The balance that I feel makes this possible, I think.

Yesterday, I felt hopeful, a feeling that is familiar to me. But yesterday it was followed other thoughts and feelings. Hope involves taking mental chances. Hope leaves the door open for good outcomes after a long time of fearing the worst and experiencing very hard times.

Hope can be frightening.

Tags Breast Cancer, fear, hope, mindfulness, stress

Categories Breast cancer, Family, Mindfulness, Parenting

Staying aloft

March 25, 2015 //

During one of my recent mind adventures, my memory took me back to the old 1960’s television show, The Flying Nun. It starred Sally Field as Sister Bertrille and took place at a convent on Puerto Rico. Due to her small size, the frequent winds, and her cornette (a particular style of nun hat), she could fly, hence the title of the show. After my mind took me to this show, my fingers took me to Wikipedia.

Sister Bertrille could be relied upon to solve any problem that came her way by her ability to catch a passing breeze and fly.

That sentence gave me a good chuckle and I thought, “How could the show’s writers sustain this premise?”

Plot 1: The convent eagerly awaits a visit from the Bishop. After an albatross makes off with the his miter, Sister Bertrille hitches a ride on a gust and saves the day by retrieving it.

Plot 2: Fire breaks out in the convent campanile. After accidentally breaking the tallest ladder in town, Sister Bertrille uses her flying power to reach the fire and put out the blaze.

Plot 3: A little girl’s kitten is stuck in a tree! The fire ladder is still broken. Sister Bertrille flies to the top and saves the day!

Plot 4: Run away kite!

See, not sustainable. Nonetheless, the series lasted two seasons. How did they do it? Also, how did her cornette stay on?

A fictional life needs substance to sustain itself. It can’t be utterly ridiculous.

A real life needs so much more.

Once upon a time, my blog was often humorous. Once upon a time, my blog was mostly about cancer. My blog has changed and my needs have evolved. My husband asked me yesterday, “Do you still think about cancer every day?” I told him, “yes” and I have thought about it every day since May 25th 2012. I mean this literally. Every day.

But thinking about cancer and being actively treated for cancer are different. I think back to what I needed to do during my active treatment and I can’t believe it. The extra work I had to cram into my schedule in order to take time off for surgeries, the number of surgeries, the telling people or not telling people about my health. The changing landscape of my body. The changing energy levels. The changing brain. The major unknowns about even the near future. One of the ways I dealt with the stress and fear with laughing at the ridiculousness of it. That is a coping strategy that is useful to me, it sustains me.

I think about sustainability and capacity a great deal. I want to be a healthy person. It is too easy for an active person such as myself to work too hard and to get my life out of balance.

But sometimes we just have to work really hard. Cancer treatment is one of those times. One of the hardest thing about this time as well as during other unpredictable and serious stressors in my life is that I don’t know how long I will have to work super hard in crisis mode. In the past, I used to tell myself that I would slow down once the stressor passed, for example, once I finished my Ph.D., once I got my career settled, once my daughter was older, once we bought a house, etc.

Those stressors never stop. Life is hard and complicated. Fortunately, I appear to be in good physical health and my mental health is strong. I have a safe place to live, a loving family, lots of friends, and a wonderful job. But it is easy to get caught up in moving too fast, worrying too much, and creating needless suffering for myself even in a life that in most respects is an embarrassment of riches.

As I’ve mentioned recently, right now I am focusing on having more fun with my husband. We do something, just the two of us, at least a couple of times a week. We went on a trip. We went to grown up prom. I have also started having more fun with my daughter. I think that the fact that I am more relaxed has had some positive impact on her among other things. Just last weekend she told me, ‘Mom, have you noticed that I am out of my “I hate my mom” teen phase?’ I have learned to accept these lavish gifts with understatement. “Hmm, I guess yes, I’ve noticed. Why do you think that is?” She replied, “I don’t know. I guess I just got older.”

I take these beautiful moments for what they are, moments. And they seem to be threading together into increased maturity. But her growth is not linear; it has peaks and valleys and plateaus. All of our lives are like this, even the most stable of us because there are so many aspects of life that are out of our control.

My family life is still full of unknowns. My husband and I still deal with major stressors and challenges both within our immediate family and in our extended family. We are part of what is called “the sandwich generation“. Sometimes I feel like we are the PB&J left on the bottom of a backpack for a week that ended up getting run over by the school bus.

Nonetheless, we are making time for fun. We have trips or fun visits planned for every month from May and September. My passport is being renewed as we speak. We will see two coasts, mountains, and two states. We’ll travel by planes, trains, and automobiles. We’ll be surrounded by friends, by cities, and by nature. And yes, friends, there will be photos, lots of them.

I am discovering that I need to make time for peace and enjoyment. One of the least sustainable premises in real life is waiting for life to get easier.

Tags Breast Cancer, Family, fun, life balance, Marriage, mindfulness, stress, The Flying Nun, travel

Categories Breast cancer, coping with humor, Family, Feelings, Flora and Fauna, Marriage, Mindfulness

Repost: The Guardian

March 9, 2015 //

Lisa Bonchek Adams died over the weekend, at age 45. This is a repost of the letter I wrote to the Guardian, following the publication of an online article about whether it is appropriate or ethical for people with stage IV cancer to use social media to communicate about their illness. Lisa was called out as an example in this article.

I was not a personal friend of Lisa’s but I am very thankful to her for her advocacy. I am very sad about her death and I hope for healthy healing for her friends and family. It will likely be a very long process of grief, especially for her three young children. My hope is that her advocacy and the meaning that it added to her life, will also provide a positive touchstone for them.

My letter, dated 1/12/14, follows.

Dear Editor,

I am writing in response to Emma Keller’s article, which was published by you on 1/8/2014. The author used Lisa Bonchek Adams, who uses social media to communicate about her life with stage IV breast cancer, as an example of a possible unethical use of social media. I am angry about the journalist’s position as well as how the article stimulated a number of negative comments toward someone who needs no more negativity in her life. I have many objections to this piece and I will delineate a few of them here.

First, I believe in freedom of speech. I also believe in personal and professional responsibility. With all of the corruption and violence in the world, why target a mother of three with stage IV breast cancer, just for using social media to communicate about her experience with a horrible disease? This tact makes no sense at all to me.

I object to the characterization of Ms. Adams’ communication as “TMI”. Journalists cover natural disasters all of the time. They cover earthquakes, famine, hurricanes, and more. The photos and the written stories describe the devastation that people suffer. They describe the resilience and the heroism. Although not everyone is comfortable with the sadness of these stories, the stories are sympathetic and not considered TMI. Cancer is a kind of natural disaster. It is a disease that ravages and impacts countless numbers of people. Is it TMI because Ms. Adams is reporting on herself instead of being interviewed and photographed by “proper” journalists? If a hurricane survivor decided to get support and communicate about his/her experiences in dealing with a natural disaster, would we call this TMI? Would we as fellow human beings make so many negative comments about this person? I think not.

As a psychologist, I understand that distancing ourselves from an illness that can strike anyone, especially a young mother of three children, is a way we deal with the realities we don’t want to consider. They are too close. We can’t think about potential personal disaster every second of every day and function as healthy people. But it is also true that we can’t constantly deny the possibility of disaster and be healthy people. We have to incorporate potential malady into our lives. Understanding and accepting that bad things happen to good people is a building block of compassion. Without it, we let our own fear lead to unfairly assigning negative qualities to people, who are ill through no fault of their own, and doing their very best to manage under truly difficult circumstances.

As a breast cancer survivor, I understand how cancer has changed my life and my relationship with the outside world. I don’t know why I got breast cancer. I am a responsible person, a loving wife and mother, and a professional dedicated to improving the lives of children. I don’t know that I will have a recurrence. I am doing my best to live a healthy life but there is no guarantee that cancer, some other disease, violence, or an accident will end my life. I could say that it’s not fair that I got breast cancer and have had to endure its treatment, which even in this day and age, is brutal. Breast cancer, like a hurricane, is not fair. It is a natural disaster. People afflicted deserve compassion. We live with cancer and its threats in one way or another, every day.

I am also an active blogger about my own breast cancer experience. In doing so, I have enriched my life immeasurably in having made connections with wonderful people such as Ms. Adams. Having cancer is very isolating. It creates a juxtaposition of grief with a deep appreciation of the gift of life, which many people don’t understand. And there are aspects of breast cancer that make it particularly isolating. The breast cancer social media community is a very powerful network of women and men. I have drawn strength through the true friendships that I have made as well as the support of an amazing group of people, who live all over the world.

We will all die. Most of us do not know precisely when or how this will occur. People with stage IV cancer know that they are likely relatively near the end of their lives and that further they are likely to die from cancer. So many people with terminal disease spend their last years in isolation, even if when they are still able to work and carry out many daily responsibilities. Many of them don’t even “look sick” until much later in their disease progression. But their lives can be lonely and arduous. Social media can serve as a way for people to connect with others who understand. I have friends with stage IV breast cancer. I don’t know how much longer they will live or how much longer I will live. But I know that I will stay with them even through the cybersphere until our dying days. I so appreciate learning how to be a better friend to someone who is losing abilities while respecting their humanity and resilience. It is scary to know that I will likely lose more friends than I would have as a function of being part of the breast cancer community. But it is worse to think of us not having each other; there is real joy, love, and shared grief over the Internet. I consider it an honor to be trusted as a friend and to be relied upon to be there during the darkest times.

There are a lot of problems with our electronic age. Many products aimed at children, in particular, are harmful. There is nothing “virtual” about the breast cancer community. It is very real. Lisa Bonchek Adams is a real woman with real connections. This community is one of the very best and real things about our virtual age.

Thank you for your kind attention to my concerns.

Sincerely,

Elizabeth P. MacKenzie, Ph.D.

Tags Breast Cancer, compassion, fear of cancer, fear of death, Lisa B. Adams, social media, The Guardian

Categories Breast cancer

Temple of Doom

March 1, 2015 //

Back when I was a researcher, I used to travel to conferences to make presentations. One of them was the meeting for the National Association for the Education of Young Children (NAEYC), which was held in Anaheim, CA. Yes, the largest conference devoted to the education of young children was held at Disney Land. The conference attendees were offered a special rate to go to the park. It was less than half the price and since it was for admission, after hours, there were no long lines for the rides.

Since this was a professional conference, I was attending with other people from the not-for-profit for which I worked. One of the people from work did not like me. She was the director of one of the other departments in the organization but since my position involved work in her department, she was one of my direct supervisors. And when I mean that she didn’t like me, I mean that she pretty much actively disliked me. She also did not like my work. As you could imagine, it was awkward hanging out with a group of people, one of whom had a lot of power over my job not to mention constantly emitting, “I don’t like you” vibes.

As I have mentioned previously, I do not like to go on scary amusement park rides. The group I was with wanted to go on the “Indiana Jones and the Temple of Doom” ride. Ordinarily, I would have just said, “No way!” But my boss was there and I knew how much she believed in employee togetherness. I asked an employee how scary the ride was and she told me that it wasn’t. So I agreed to go on the ride.

The ride began and within about five seconds I realized that it was way too scary for me. I closed my eyes and started doing deep breathing. Soon, I felt calm. I was aware of the way the air felt on my skin as the ride accelerated in speed. I noticed smells of liquid vapors and of machine part lubricants. I could also hear the gasps and yells of the people who were experiencing the ride. I noticed sounds of surprise, fear, and exhileration. These are all strong emotions. I felt no strong emotions but I noticed and observed.

As a child and adolescent psychologist, I often work with children and families when they are in distress, experiencing strong emotions, mostly painful ones. It would not be helpful for me to join in with the distress. “Oh no! That’s terrible! What are you going to do?” I need to be present and engaged but not swept away. I need to avoid adding drama. I am there to carefully observe, interpret, and to provide assistance.

It is a complex process. Clinicians who do not demonstrate enough empathy and emotional connection are described as cold. Clinicians who demonstrate too much emotion are described as having poor boundaries. And the definition of what is too little or too much varies person to person. To be the right amount of present, calm, and connected is incredibly therapeutic to someone who is in distress. To be too little or too much is not only counter-therapeutic, it is also not healthy for the clinician.

I started formally practicing mindfulness nearly three years ago as a way of dealing with my breast cancer diagnosis as well as to live a healthier life. It occurs to me that many years before this time, I was already practicing it in session, with my patients. This helps me be effective and also minimizes the amount of stress I take home with me. It has been trickier to apply mindfulness to the rest of my life. But I have been doing it and I plan to continue. It has greatly enriched my life and helped me cope with the scary hurts and heartache much better. I still experience all emotions, at all levels. I experience pain. I am having more and more moments of acceptance and less and less suffering.

I have noticed some shifts in my personal relationships. Some of the shifts have been uncomfortable. I initially found myself getting annoyed at how upset people got at what I considered to be minor annoyances or future catastrophic outcomes of low probability. And it’s not all complaints or expressed fears. It’s the ones tinged with helplessness or hopelessness that really get to me. Anger turned to worry and worry turned to sadness, over time. I realize that some people in my life are on a much different ride. We are no longer experiencing the same ride. Although this is helpful as a therapist, it is harder with relationships that are more intimate and more expecting of reciprocity.

At this moment, I feel a bit sad about it. But I also know that my feelings have changed about this and will likely continue to change. I do know that I have selected the right ride for me and will try to live the healthiest way I can since that is best for me and my family.

Tags Breast Cancer, mindfulness, relationships, therapeutic boundaries

Categories Breast cancer, Mindfulness

The tease of ease

February 6, 2015 //

I am grateful for my blessings, really, I am. And I have a multitude of blessings. I work hard to be a happy and balanced person. Most of the time my daily life makes sense to me. Most of the time my responsibilities feel bearable. Sometimes, like today, I feel worn out. I feel like I am living a life that requires 150% of me. People, each of us only has one whole self, which is 100%. 110% only exists on those stupid business motivational posters.

One of the things that I tried to change about my life after my cancer diagnosis is expecting myself to work near 100% capacity every day. I need to rest like every one else. I need balance and rejuvenating experiences.

I have been working myself hard since November. Really really hard. My family life has been hard and my work life has been hard. My health, thank goodness, has been good.

When I was younger, working more than is healthy, held certain seductive powers. I felt accomplished, strong, and self-sacrificing, the last of which giving a moral edge or some kind of “get out of jail free card”.

It’s so easy to work too hard. It’s hard to rest, to have ease. I hate that. I hate that having ease takes so much damn work. Easy shouldn’t be hard but it is.

Last year, I had two periods, each a few days long, when I felt transported into a fun, easy world outside of my work and family responsibilities. Both times, I spent time with friends and mostly without my family. It was fantastic. It was easy. Then I got back to my normal life, which although rich with blessings and meaning, landed on me like a ton of bricks.

The work on moving my psychology office occurred over two major holidays, some tough parenting issues, and financial stress. It took a lot of time and money in amounts far exceeding what I wanted. Although I am very happy with the outcome, I am worn out. I need a break. Yesterday, I was working on some summer plans. They became complicated quickly. At this time and place in my life, it hit me hard and I was sad. I was disappointed. I was sad and disappointed not with myself or anyone else, but with the lack of ease in my life. I was teary when my husband came home. I explained in a few sentences. He totally understood; after all, we share a life together.

It’s not easy to be easy. I guess I will keeping working hard on that.

Tags Breast Cancer, Mental Health, Overwork, work/life balance

Categories Breast cancer, Family, Mindfulness, Parenting

Lonely brain

January 13, 2015 //

As a person with “no evidence of disease”, I am grateful. I am also grateful that I continue to heal physically, emotionally, spiritually, and yes, cognitively. I have written of the attention, concentration, working memory, and organizational difficulties I’ve had since being diagnosed with cancer. (Some people call this “chemo brain” though I didn’t have I.V. chemo.) These difficulties have slowly but surely improved over time. A huge boost came after I completed a cognitive behavioral sleep program and then later, when I took gaba pentin for a few months to reduce my nighttime hot flashes. I have also had improvements through working to reduce my anxiety and grief through my mindfulness practice and personal psychotherapy. Last but not least, writing this blog is one of the most therapeutic endeavors I have ever undertaken. It, of course, has side effects like any therapy in that my posts sometimes worry my mother.

Although a good deal of my energy has returned, I still don’t work full time. I find that it is too hard to maintain my emotional and physical health when I do this so although I sometimes schedule a full time or slightly overtime week, my average is about 80%. Prior to my diagnosis and shortly afterwards (I had to cram my schedule in order to take off time for surgeries), my schedule varied from week to week but I worked up to 150% of what is considered full time.

Despite my reduced hours, I am quite busy. Although most of my day is meaningful and productive, a good portion of my day is being busy for the sake of being busy, doing trivial things that do not fill me up. And some of the trivial things would not be trivial if I stuck with them for more than a couple of minutes. But I spent some part of my day alighting from one activity to another in rapid succession.

I do this less than earlier in my cancer treatment. The main reason back then was fatigue, boredom, and the need for fun. Since I was having trouble with sustained attention, I flitted around lot. Although I have never written as much or as frequently in my life, I stopped reading books. There had been no time in my life since about age 10 or 11 when I was not reading on a daily basis, with some breaks for a few weeks during adulthood, when my stress was at its peak.

I’ve been doing a lot of thinking about accepting the things in my life about which I feel feel, grief, and anger. I know that a common fear for people impacted by cancer is fear of abandonment. My husband worries about losing me. My daughter, although she denies it, worries about it too, I think. She acts very much like other teen girls with whom I’ve worked, who have a mother with a serious disease. I worry about losing my family, through decreased participation in family life if I were to get ill again and through my own transition to death, which may not come any time soon, but will come some day.

I had a epiphany last week. Although I was aware of my own abandonment fears, I realized that I was continuing to give myself busy work to avoid feeling lonely. I have been filling up spaces in my heart and mind with filler. I have too often disengaged from my husband because I associate him with our fear of my cancer as well as the stress we have in parenting.

Since that epiphany, I have made some changes. Trivia is okay but not as a main course. And trivia is much better when enjoyed with a loved one. I also realized that a lot of my life is serious and difficult. I have a serious job as a child/adolescent psychologist. I have personal psychotherapy, our family class on mindfulness and emotion regulation, and couples therapy with my husband. Between my job and my appointments, I spend the majority of my waking hours in a mental health facility. Last Friday in couples therapy, which we have been attending weekly I said, “I want less therapy and more fun. John, I want to spend more time with you having fun.” Our psychologist thought this was a great idea. John agreed, reluctantly, because this scared him. But we’ve been spending more time together. Yesterday, I received a note from a childhood friend. Her husband “out of the blue” told her that he is divorcing her, on the day before their 27th wedding anniversary. This has also reinforced my resolve to continue to work on my relationship with my husband. Too often people live separate, lonely lives, full of activities, suffering in silence.

I am not by nature, a lonely person. Cancer has a way of whittling away at security, even for those of us with “no evidence of disease”. Breast cancer also has a way of striking women at the prime of life in terms of professional and family responsibility. Many of us have full careers, children who are not yet independent, and elderly parents who may need support. It is easy when juggling these balls, to feel fragmented and flittery, to feel engaged with everything but intimately connected with no one, not even with ourselves.

Balance right now means more fun and more depth.

Tags abandonment fears, acceptance, balance, Breast Cancer, intimacy, mindfulness, psychotherapy

Categories Breast cancer, Family, Marriage, Mindfulness, Parenting

The Verge

January 7, 2015 //

We are always on the verge of something. Sometimes, we are on the verge of great things. Other times, the verge of collapse. Still other times, the verge of sameness. There is always a future, just up ahead, which cannot be known until it gets here. In the mean time, we make our best predictions.

I have been working hard to move my business to another location. Yesterday, a large package arrived containing two small chairs. My new office is smaller than my current one and I’m needing to downsize some of my furniture. The package arrived just as I was leaving the house for work. I decided to carry the package down my front steps, which are concrete.

The box was not heavy but it was large and it blocked my view of my feet, which were at the time, shod in high heels. I missed the step and felt myself falling forward toward our front walk, which is also concrete. In that split second, I knew that I was on the verge of being hurt but I did not yet know how badly.

Fortunately, I was able to stand up right away afterwards. I looked down at the 3 by 6 inch scrape starting on my right knee and could see that I was on the verge of bleeding. So I walked into the house, cleaned myself up, and three Band-aid’s later, stopped the leaking.

Today, I am sore. I twisted my left ankle, which was painful during the night, but I was able to go on my walk today. It hurt a little but I could also tell that walking was stretching my muscles a bit in a good way. Phew! My big scrape may elicit comments from my patients tomorrow (yes, I know it is winter but it is not yet cold enough to wear pantyhose or tights with my dresses) but I appear to have suffered no lasting damage.

Most of the time our lives on the verge are this way. Most of the time, we avert crises. Most of the time, really horrible things don’t happen to most people, at least in this part of the world. And yes, I know that lots of bad things, too many bad things, happen in the U.S., but remember, these bad things are considered news. There’s a reason for that. They don’t happen most of the time.

When really bad and scary things happen, it hurts our foundation of security. It puts us on watch. It puts us feeling on the verge of calamity a lot more often than is realistic. And the thing about anxiety is that it is reinforced when we fret and the bad thing doesn’t happen. Phew, that fretting was so effective at averting crisis! Anxiety is also increased when we fret and the bad thing DOES happen. See, I told you a bad thing was going to happen.

It is no wonder that anxiety problems are so common. And it is no wonder that they are so tenacious for those of us who have had trauma in our lives. Lately, I have been feeling not in the front of my mind but in the back of it, on the verge of something bad happening. I have worries for my family and for my friends.

There are some bad things I can head off at the pass. There are others I cannot. There are others, like cancer, that sneak in like a thief, stealing more and more every day without my knowing. I do my best to choose to live my life, all of my life. I choose to believe that I can be on the verge of many things, many of them joyful and loving.

And if I were on the verge of something awful, wouldn’t it be a waste not to enjoy this short time of calm security?

Tags anxiety, Breast Cancer, trauma

Categories Breast cancer