One Hundred Percent

One hundred percent. That's an A+, a completion, one whole.

It's also a percentage I've been striving for in my own life. I'm preparing for what I hope will be the final leg of the marathon I've been running with breast cancer for more than a year. After a bilateral mastectomy with reconstruction and an implant exchange, I'm scheduled for a nipple reconstruction and scar revision surgery next month.

I've gone back and forth during the past year on whether I wanted this last operation. Surgery is hard on the body, and this one will have me laid up during the holidays. But I finally put the green light on it because I'm shooting for 100 percent. I want to feel like 100 percent of me again.

Pain Management

This past year has been filled not only with physical pain, but psychological pain, as well. A mastectomy is disfiguring and I was troubled by the way I looked immediately after the surgery. Going from DD cups to nothing was difficult to say the least.

There has been an upside. Some of my clothes fit better with my D cup implants. My breasts no longer sag. I don't have to wear a bra if I don't want to. The downside is my chest no longer has any feeling to it. It is a strange sensation. I have slowly, but surely, come to accept what I look like now. The scars are fading quickly. My breasts are the same pretty shape they were when I was younger.

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Milestones Along the Way

I have hit a few milestones recently that have helped me along to my 100 percent goal:

• I bought a "real" bra for the first time in more than a year. I had been wearing sports bras and the compression bras I had to wear after surgery. I had to screw up some courage to go into the lingerie store and ask an associate to measure me. 
• I put on a swimsuit. This was a bigger deal than I thought it was going to be. At my local YMCA, I have spent the past three months participating in their LiveStrong program for cancer survivors. Our group decided to try an aqua aerobics class in the pool. I wasn't even sure my swimsuits would fit me. When I tried them on, I really liked the way the look. I gained a few more percentage points after this one. The experience also reiterates the need to push my personal boundaries.

None of the healing I have achieved this past year could have happened without wonderful doctors. For those of you who may be making decisions about treatment for breast cancer, it is important to remember that you don't need reconstruction if you don't want it. Insurance companies are legally bound to cover reconstruction if they cover a mastectomy. For people like me, reconstruction is an important part of the healing process. For other people, further surgery is unacceptable. The decision is yours, but a consultation with a plastic surgeon will go a long way in helping you decide.

If you choose reconstruction, choose your plastic surgeon with care. I've heard far too many stories from fellow survivors who have had to sit through crass and demeaning exams (Gentlemen, clean up your act!). My plastic surgeon is the doctor I have seen the most this past year. I am fortunate to have met him. He is kind, funny, knowledgeable, and has always given me the truth about my treatment. He has been compassionate and supportive when pain and doubt have invaded. Although the office visits could be difficult, I never dreaded going. His office staff has been equally kind and supportive.

When I first met him - when my head was still reeling from my diagnosis - he told me it generally takes 18 months to start feeling "normal" again. I'm right on track.

I'm at 98 percent and I'm aiming for that A+.

Survival Mode

It strikes in the middle of the night.

I awaken with a start. As my mind drifts inward in my darkened bedroom, I start to wonder if a rogue cancer cell may have escaped from my breasts. Will it multiply?  Will I have to do all this again? Will it kill me this time? I think about those funky little aches and pains. Are they really just "funky" and "little?"

I have since learned this thinking is perfectly normal. 

I have shifted gears in my cancer experience - from treatment to survival. I recently met with a nurse practitioner with Hartford Hospital's cancer survivorship program. I would encourage anyone in recovery to participate in this kind of program if you have access to one.

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My breast surgeon referred me to her as part of the follow-up to my breast cancer diagnosis, bilateral mastectomy, and reconstruction surgery. It has been more than a year since my diagnosis and nearly a year since the surgery that removed both my breasts.

Re-Hearing My Diagnosis

In our meeting, we took it from the top.

She reviewed my original lab reports with me. It was interesting to hear them again from the other side of  my treatment. In August 2014, I didn't know as much about breast cancer as I do now. The emotional devastation also clouds perception. I knew my cancer was in its early stages and my tumors were very small. What I didn't hear back then was how aggressive my form of cancer was. I dodged a bullet.


Another issue we tackled was anxiety. I characterized my fears of recurrence as mild. I have them, but they don't interfere with my daily enjoyment of life. She made sure I had information on where to turn if I feel overwhelmed. Time, she said, heals these feelings.

Also as a result of our meeting, she gave me a written summary of all my treatment. It was forwarded to my breast surgeon, my primary care physician, my oncologist, and my plastic surgeon. If I should need to tell a new doctor or other healthcare professional about my illness, it's all right there.

Moving forward

We also talked about ongoing follow up care and resources that are available to me to maintain ongoing good health. I had several takeaways:

• Nutrition - I took a one-night class on nutrition after cancer, given by a dietitian and health coach in the hospital's Integrative Medicine Program. I have been on a healthy-eating quest for some time, but this class clarified a number of things. The goal of post-cancer nutrition is to create an inner terrain that is as inhospitable to cancer as possible. To do that, eat G-BOMBS - greens, beans, onions, mushrooms, berries, and seeds and nuts. Plant-based diets can help prevent recurrence. I also shop with a list of the produce that is best purchased from organic farms.
• Exercise - This message keeps coming at me. Exercise is one of the best and most effective ways to prevent cancer in the future. I have been a faithful home exerciser for many years, but I felt like I needed extra help as I continue my recovery from the surgery. I was referred to the LiveStrong program at the Farmington Valley YMCA, an exercise program that is tailored to cancer survivors. Twice a week, I attend a class that includes 30 minutes on cardio equipment, followed by 30 minutes in a small group with a trainer that focuses on building strength, flexibility, and balance. The final 30 minutes are for stretching and relaxation. I can't say enough good things about this program. It provides cancer survivors with a free family membership to the Y for three months. It is wonderful to be with a group of like-minded people. There are certain things I don't have to explain to them. An added blessing - my first evening at the program I discovered one of my trainers is a former colleague whom I haven't seen in several years. It was wonderful to see her!
• Chemicals - I had never given much thought to the products I put on and around my body. I have now checked most of the cosmetics I use with the Environmental Working Group website. Parabens, sulfates, and phthalates have been associated with breast cancer, and I will avoid products with them. Many of my favorites are made without those potentially dangerous chemicals (Sadly, my favorite cleanser isn't one of them. It contains parabens. But the manufacturer is in on the conversation, and they are trying to formulate the product with a healthier preservative.) 

"A cancer survivor is defined as anyone with a history of cancer, spanning from the time of diagnosis and for the remainder of life, whether that is days or decades." - National Coalition for Cancer Survivorship

With the survivorship program, I feel I have regained an important sense of control over what is happening to me. I feel like I am taking good care of myself. I've even started to feel pretty again.

So when those middle-of-the-night moments recur, I can banish them by listing the ways I am safeguarding my health.

The Death of a News Crew

Like everyone else, I  reacted with horror at the deaths of Alison Parker and Adam Ward, the journalists who were gunned down on live TV in Roanoke, VA. It is another senseless episode of gun violence that will have us questioning (again) the role of guns in our society.

But Alison and Adam's murder struck a much deeper chord with me. I, too, have been part of a news team that had to cover the murder of one of their own.

Fast Friends

In 1987, I was a reporter with the Journal Inquirer, then the third largest newspaper in Connecticut. A new reporter had just joined the staff. Her name was Kara Laczynski. Like Alison, she was 24 and at the beginning of a promising news career. Kara was bright, beautiful, and talented. We quickly became friends and then neighbors when she rented an apartment in the building next door to mine in Hartford, CT.

That October, she had planned a weekend away in Philadelphia, where she was meeting up with friends from her alma mater, the University of Pennsylvania. She had been looking forward to the trip for a while. My last glimpse of her was in the newsroom, when she turned to wave goodbye to me and promised to tell me of her weekend's adventures.

A Tragic Day

That Monday morning, she wasn't at her desk and hadn't called in sick, very uncharacteristic of this dedicated, hard-working professional. After being unable to reach her, her editor - knowing we were neighbors - asked me to check on her. My fear was that she was ill and needed help.

When I got to her building, I saw her car parked in the lot. I called her phone, rang her bell. No answer. I then called the property manager and relayed my concerns. She sent over a member of the maintenance crew to unlock the door.

He and I had the horror of discovering Kara's naked, lifeless body sprawled on the floor of her living room. Her hands were bound, and a belt around her neck strangled the life out of this beautiful woman. Strangers gained access to her apartment. Her death was likely the result of a sexual assault gone wrong.

The next days, months, and years passed by with a blur. An investigation resulted in arrests in Kara's murder, but the case became bogged down in a racial, cultural, and political morass. Some say Kara's murder marked a tipping point for Hartford, damaging its reputation and sending it into a tailspin. Mistrials were declared, and no one was ever convicted of murdering my friend. The justice system let her down, and it let me down.

Aftermath

It is difficult to gather news when you are part of the story. "I feel like this happened to my little sister," one reporter covering the case remarked. Another - a seasoned crime and court reporter - struggled with his emotions when the crime scene and autopsy photographs were entered into evidence. I interviewed Kara's father for a piece, still one of the hardest things I've ever had to do.

My thoughts and prayers are with the WDBJ7 team. These next days and weeks will be dark ones. They are coping with the sudden, tragic, and very public loss of people they cared about. There are still stories to be written and broadcast about Alison and Adam. It is difficult to properly mourn when the cameras are on you. The apparent suicide of the suspected shooter will spare them a lengthy investigation and trial. But this won't be easy. They will never get over it.

The effects of a murder are long and far-reaching. Alison and Adam's coworkers will likely have sleepless nights and other emotional repercussions. They may spend years looking over their shoulders every time they are out in the street. They may relive those terrible last moments of their colleagues' lives,

made worse by the fact that the incident was on live television. The news business is a transient one, and those working for the station will likely move on to other jobs. But they will all have this one important and horrible day in common for the rest of their lives.

Finding Peace

I hope they will be like me - able to make peace with tragedy. At first I agonized over what Kara had to go through as she died. Her memory brought pain. I had trouble listening to the music of U2, her favorite band. I had a lot of what-ifs in my head.

But after nearly 30 years, her memory brings a smile to my face. I remember her beautiful broad smile, curly black hair, and sparkling brown eyes. I remember her intelligence and humor and the way she valued learning. I remember that she loved journalism because she wanted to stand up for the underdogs in life. What I remember now is the vibrancy of her life.

But even after so many years, I still have difficulty talking about this period in my life.

 To all those who are grieving this day,. I wish you peace.



 

A Year Has Passed

It's been one year since I was diagnosed with breast cancer. The past year has been a thrill ride with many peaks and valleys. Although it was difficult, I'm not sorry I have gone through this experience.

I spent most of July 2014 in a whirlwind of tests. First came my routine mammogram; then a second-look mammogram; then an ultrasound, and biopsy. Finally the phone call from my doctor came. "Are you somewhere you can talk?" she asked me. That's never good.

Breast cancer is a difficult disease. It strikes us on a part of our bodies that is uniquely feminine. It is fueled by the hormones that make us women and mothers. As one friend put it, "It messes with your head." So I had much to reflect upon as this one-year anniversary approached.

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Fear

I was afraid of a lot of things - dying, pain, sickness, being unable to be present in the lives of my friends and family. I faced down a lot of them and have come out the other side. After you've had cancer, it hard not to be fearful and mistrustful of your body. There are days when I worry about every little ache and pain. But I now know how resilient my body and mind are.

Friends

Where would I be without them? On my last day of work before my leave of absence, my colleagues (all of them women) gave me a surprise lunch. During lunch they gave me several gifts - a beautiful shawl, a soft pink bear, and an assortment of teas. The shawl was like having their arms around me. The bear caught a few teardrops, and the tea sustained me when eating was difficult. Because of their kindness, I was able to embark on my journey with a light heart.

"Breast cancer strikes us on a part of our bodies that is uniquely feminine. It is fueled by the hormones that make us women and mothers."

Then there are my church friends. Our family is part of an Episcopalian community. The prayers for me were palpable. The day before my surgery I attended our Sunday service. They gave me a laying-on of hands to bless me 24 hours before my surgery began. The morning of my surgery, I awoke early and checked Facebook. There Amy, one of my church friends, and her young daughter posted a picture of them wearing pink sweatshirts in my honor. Throughout the day, church members posted to my husband and me that prayers were ascending. During my recovery, home visits were made, communion offered, and meals delivered.

Another friend, who is an executive for a major hospital, stepped in when I had to change doctors and facilities. I was unable to see ahead. She solved all my problems before the end of that difficult day.

Family

You can read about my husband's support by clicking here. We are fortunate to have a close relationship. The rest of the family rallied behind me. My two young nieces posted a picture on Facebook in pink t-shirts

to let me know they were thinking of me. My mother, mother-in-law, sister-in-law, aunt, and cousin went to work stocking my refrigerator and freezer with meals for the next month. My house was kept clean. All I needed to worry about was getting better.

Ultimately, I have had to arrive at a peaceful place. I can't live in fear, but I have to live in reality. One day I will die. I don't know when. I don't know if cancer will take me. Today, I am alive and healthy. I wish you all good health!

You can read more about my experience with breast cancer by clicking on the topics in the sidebar.

How to Reconnect With Your Body After Breast Surgery

We've all had these moments. You look at a photograph of yourself at a family wedding and are shocked by how much weight you've gained. You've lost weight, but still are surprised when you look in the mirror and see your thinner self. Then there were the almost-daily changes during pregnancy that had you wondering what was going on in there.

These are times when we have not truly connected our bodies and our minds. Breast surgery can bring about that same kind of disconnect.

I had a double mastectomy last fall to treat breast cancer. I've undergone months of reconstruction and still face one more surgery. I have been struggling with my body image ever since.

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Those days following my surgery were difficult ones. My breasts were a part of my body that I've always been happy with. My first reaction upon seeing my chest for the first time was "This isn't me." Then I cried. A lot. I am fortunate to have a supportive husband, who hugged me and reassured me. "This is what healthy looks like." It is hard to fight the feeling that your body has betrayed you. 

In addition to emotional difficulties, I faced physical ones, too. My posture was thrown off. I couldn't reach my hands over my head (brushing my hair was an ordeal). I tried to get as much activity in each day as my battered body would allow. Lifting anything (including cats and coffee cups) was hard.

Once the healing process was begun, I began to find ways to make friends with my new body. The following are some of the things that have worked for me. I'm not a medical professional and you need to speak to your doctor during your recovery. I also have not been compensated by the makers of any of the goods and services I write about here. They are simply things I've found helpful.

Reconnect With Your Body Through Exercise

One of the best things I did for myself post-surgery was ask for physical therapy. I was sent to a therapist who specialized in mastectomy recovery, and she proved a valuable resource. She gave me information about things like lymphedema. She reassured me that I was recovering normally. She was a shoulder to cry on. She also helped me get back the use of both arms, improve my posture, and build up my strength. She stressed the importance of ongoing exercise, particularly the emotional benefits of movement.

I've been a dedicated home workout fan for many years (remember Jane Fonda's Workout?) I have a space set up in our basement where I can exercise. But following my surgery, there were many videos in my library that no longer worked for me.

I had to take a look at workouts that I could do and that felt good. I (literally) dusted off my old step and got out my old video from 1992. Stepping worked for me because I still had a strong lower body. I could modify the movements of my upper body according to what I could do each day. It's still one of the sweatiest, heart-pounding workouts out there if you load up the risers.

Some of my favorite videos, both new and old

I was also able to do a little mat pilates work and discovered Zumba for the first time. I had very strict weight lifting limitations from my doctor following both surgeries. I can't stress this enough - it's important that all your doctors know what kind of exercise you are doing. 

Reconnect With Your Body Through Nutrition

I start the day with a healthy smoothie

This has been an ongoing journey for me. I suffered some health complications even before I was diagnosed with breast cancer. Those led me to becoming a vegetarian. Research has shown there may be some benefits to following a plant-based diet for cancer patients. But the biggest difference for me is how I feel. Since giving up meat, I have more energy and my skin and hair look healthier. This diet may not work for everyone, but it's helped me. (Once again, your doctor's advice here is crucial).

I start nearly every day with a green smoothie. It includes leafy greens and some kind of fruit, fat, and protein. This morning's drink was kale, pineapple, banana, flax meal, and coconut oil. It fueled my workout and kept me going until lunch. I feel like this starts my day right. For other meals, I have rice, beans, lentils, and quinoa, along with lots of vegetables.If you choose this kind of diet, there are many resources on line to help you. Perhaps the most important bit if nutrition advice I can give is "Listen to your body." Pay attention to how you feel when you eat certain foods. Develop a way of eating that will keep you healthy.

Some fruits and vegetables from the local fruit stand. Buy local and in-season!

Reconnect With Your Body by Showing Emotion

I get it. We all want to be the brave "pink warrior," able to cope with life and our illness. We don't want our friends and family - especially our children - to worry. But breast cancer is big, serious, scary stuff. Keeping all our emotions inside can be detrimental to our overall health and recovery. 

I felt very guilty when, during a particularly difficult day before my surgery, I began crying and couldn't stop. My son saw me like that. I worried about the effect it would have on him (he's 16). A friend reassured me. "He saw you being real," she said. He also saw that the sad and angry moment passed quickly, perhaps a good life lesson. 

I relied on friends who have recovered from breast cancer. My mom, a survivor herself, lives with us and helped reassure me during some dark times. And there is, of course, my husband. I've written about his loving support here.

Showing your emotions can be the first step in asking for help. There were things I simply couldn't do without help. I needed to really understand that. It was temporary, as I continued to build back my emotional and physical strength.

I still don't feel like I'm all the way back. My reconstructed breasts don't quite feel like "mine" yet. My plastic surgeon reassured me this is normal. He's found that patients take about 18 months to feel some kind of normal again.

Cancer was a reminder that I need to continue to be vigilant with my health. I wish you all good health!

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Coming Out of the Comfort Zone

I'm one of those people who likes to know what's expected of me and exactly what will happen in a given situation. While this personality quirk means that I'm always prepared and ready, it also means that it's difficult for me to drag myself out of my comfort zone.I have been faced with many out-of-the-box situations in the past year during my treatment for breast cancer.

I was reminded of the value of trying new and different things in life during a recent dinner date and concert with my husband.

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A Birthday Gift

For my birthday this year, my husband got us two tickets to see Todd Rundgren. Those of you who are a certain age will remember the lanky, long-haired mega-talent from '70s hits like "Hello, It's Me," "I Saw the Light," and "It Wouldn't Have Made Any Difference." 

Rundgren's seminal double-album, "Something/Anything?" was a hit just as I was beginning to appreciate and listen to popular music.The album's big single "Hello, It's Me" is a near-perfect love song.  

In addition to his solo career, Rundgren fronted several bands (The Nazz and Utopia) and was a highly sought-after producer and engineer. He was known for his meticulousness in the studio and his ability to experiment with different sounds. He was one of the first artists to recognize that video could enhance his message. His Utopia Studios was renowned as an early innovator of music videos, and videos produced there found their way into the early rotations of MTV.

Rundgren's fingerprints are on a lot of music that chugged its way through my college and young adult years. Among the artists he produced are Patti Smith, Hall and Oates, XTC, the New York Dolls, Grand Funk Railroad, the Tubes, and Meatloaf (he was the driving force behind "Bat Out of Hell."). 

Pre-concert selfie outside of Infinity Hall

A multi-instrumentalist, Rundgren plays most of the music on his albums, which often feature eccentric, but surprisingly meaningful sounds. His work paved the way for such artists as Prince and Beck.

His new album, "Global" is no different. This time, Rundgren experiments with electronica. I've often found this kind of music cold, but underneath the complex electronic sounds are the soulful Philly-style harmonies he's known for and the warmth of the themes of community and protecting the earth. I had not heard any of his new music before the night of the concert.

A Concert to Remember

My husband and I headed out to Infinity Hall, a small venue in northwestern Connecticut best known for its concerts on PBS. We had dinner in the bistro and took our seats about 15 minutes before the start of the show. 

The stage before the show started.

There was a single seat next to me in our row. It was soon filled. "Hi! I'm Jeff. Longtime Todd fan!" he said, extending his hand. He then regaled me with stories of other Rundgren concerts he'd attended, including one at the Bitter End in New York City that was recorded for the iconic "Back to the Bars" album in the late '70s.

Jeff said staffers at the hall had told him that the roadies had been setting up the stage since early morning. I told him I had seen an electrical generator parked out back. Clearly, something was going to need a lot of juice.

"This concert's going to be a little different," Jeff told me.

A Lasting Message

We soon found out what all the fuss was about. 

The lights dimmed and a guitar-toting Rundgren burst onto the stage to the tune of "Evrybody," which is reminiscent of "Bang the Drum All Day" from the '80s . The tall, black monoliths on the stage came alive with video, as two Afro-wigged singer-dancers backed up Rundgren. 

Rundgren was dressed simply in jeans, sleeveless t-shirt, and sneakers. His signature long hair is still there. Like all of us, he's gotten older. He's now 67 years old. But the sheer energy he exuded was nothing short of inspirational. 

There was little banter with the audience. The music spoke for itself. "Blind" and "This Island Earth" warn of climate change. He celebrated women (including Rosa Parks and Malala Yousafzai) in "Earth Mother." He sang about the joys of finding a grounding love in "Terra Firma." The ballad "Soothe" sounded like an older, wiser sequel to "Hello, It's Me."

He ran through most of the new album, sprinkling in music from Utopia and his older hits. By the time he did the song, "Rise" I didn't want the concert to end. As the music thudded, lights flashed, and the choreographed videos played, I felt bathed in a creative force.

When the encore  finished and the lights came up, my new friend Jeff was as ecstatic as I was. "Did you hear what he did with the classics?" he asked me. I was in awe that Rundgren could surprise a longtime Todd fan like Jeff with his concert innovations. It left me with several important messages about my own life.

• Keep it fresh. I'm sure there have been a few disappointed concert-goers who expected An Evening With Todd Rundgren and older tunes. But I was amazed at the freshness of the sound.  
• Keep an open mind. I didn't know what I was expecting from this concert. After the surprise of the opening number, I just went along with this thrilling ride.
• Age makes no difference. The guy is 67 and up there still rockin' it out.His music - both new and classic - is very relevant.

This concert reminded me that I've been blessed with the ability to hit the curve balls life has thrown at me. I need to keep things fresh in my own life. And I can still be on my feet, clapping my hands, and dancing to the music like it's 1976.

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Here's the song "Rise," off Todd Rundgren's "Global" CD.

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The 3 Things I Learned From Blogging About Breast Cancer

Happy first birthday to The Middle of the Journey - and what a journey it's been.

I started this blog a year ago as a creative outlet. I had been looking for a way to write more, but hesitated about starting a blog. What did I know about setting up a website? It turns out, it's pretty easy to get started. So off I went with my new blog.

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My first posts last July were about parenting and other observations. I didn't worry about finding topics to write about. Inspiration is usually around the next corner. Then, I received a diagnosis of breast cancer. In the last year, I've undergone a double mastectomy and reconstruction and I'm on a course of Tamoxifen for the next five years.

The diagnosis abruptly changed my blog's mission. In those first few days after my doctor's phone call I scoured the internet for information. I came across the blogs of women who have gone before me. They bravely shared their pain, sorrow, and, yes, joys with their readers. I found them a tremendous comfort and from then on, I hoped my blog could "pay it forward" to others who find themselves in the same situation.

Here are three things blogging has done for me in the past year.

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I learned to stay positive

Although I'm known for my sense of humor, I am by nature a bit melancholy. I can quickly assess the downside of any situation I'm in. But I didn't think anyone would want to read sad blog posts on an ongoing basis, and I certainly did not want to paint myself as a victim. In order to fulfill my new blog mission, I had to find the positives. I shared some painful moments, but my ultimate message to readers is "You will get through this." The blog helped me cultivate a positive attitude.

I learned there is power in sharing our stories

Breast cancer treatments are as individual as we are. No two are the same. But I learned from seeing how others got through their treatments and continued on with their lives. Those blogs also helped me in making decisions. By seeing how other women chose their course of treatment, I was better able to choose my own. 

I learned that blogging is a very social activity

At first blush, it would seem that blogging is a solitary activity. In some ways, it is. But writing my blog has put me in touch with a rich and varied community of other bloggers. Unfortunately, in a group centered on breast cancer, sometimes people die. I have mourned for those I never met in real life. I have also admired the courage and stamina of those who are battling the disease. I have also "met" bloggers from all over the world who write about a plethora of subjects - art, photography, parenting, education, religion, running. There are people out there who are willing to mentor new bloggers like me. They are all fascinating people. The blog brought me to them.

I'm still smiling!

If you are considering starting a blog of your own, I highly recommend it. You will find it more rewarding that you thought, and it will probably be more work than you thought. I started this blog with a feeling of trepidation - would it be good enough? Would anyone read it? Today my feeling is triumph!

If you'd like to read more posts about my experience with breast cancer, click on the topics in the sidebar. My journey started with a post titled Schrodinger's Cat. 

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