Black Suede Boots (One year ago today I found out I have metastatic breast cancer)

October 1st, 2013 § 36 comments

IMG_3319This is the last photo I took before I found out I have metastatic breast cancer.

This photo was taken in the final days of September when I went to visit my surgical oncologist for my annual checkup.

I’m wearing a hospital gown with those boots. The contrast of the gown and boots made me laugh.

I snapped the photo.

The actual diagnosis came one year ago today.

It came on the first day of Breast Cancer Awareness Month (a month which has always driven me batty).

It came more than five years after I finished treatment for stage II breast cancer (no, five years without a recurrence does not mean you’re cured, let’s just bust that myth right now. Hormone receptor positive breast cancer in particular can return after 5, 10, 15 years or more).

……

I went to my surgical oncologist annually so she could check on how I was doing after she surgically removed both breasts in January of 2007. After the active post-surgery period, the visits consisted mainly of a physical exam and a talk about how I was doing and what post-chemo treatments I was on.

At this particular visit I complained of some rib pain in a place where I’d broken two ribs in a fall a few years prior. Nothing else was bothering me that day. While I was changing into my street clothes she phoned downstairs to my medical oncologist who said he would put orders in to repeat my bloodwork a month early. It was a test he did every six months at that point.

None of us were worried.

Flash forward a few days to Monday, October 1, 2012.

One of my medical oncologists (I have two, one is a general hematologist/oncologist and one is a breast oncologist) walks into the room with a concerned look on his face and says hello and goes straight to the computer. He starts punching things in to log into the system.

I ask him, “How are you?” “Not so good,” he says. I am sure he’s talking about himself, his family, his favorite sports team perhaps.

“Your markers are elevated,” he says. And only then does he turn to make eye contact with me. I know now, looking back on it, it was too hard from him to tell me. He really didn’t want to deliver that news that day.

When he tells me, he knows I know what that means. We’ve been a team for more than five years by then. He knows I know. It doesn’t need to be explained.

He looks at me while I crumble. And swear. A lot. He comes over to comfort me. I am alone in that room with him. No one expected this to be anything but routine. I didn’t bring anyone with me for the appointment, I almost never had company with me at any of my appointments over the years. That’s how I liked it most of the time. I still do, actually.

But today’s visit rapidly becomes the farthest thing from routine.

……

I wasn’t expecting it. I confess that. The pain I’d complained about a few times during those five years? That pain had never turned out to be anything.

And oh… by the way, that rib pain that I complained about? It actually was nothing. It was just sore ribs from the old fractures.

I was sent across the street to the hospital immediately for a chest x-ray. This looked clear. My PET scan the next day showed no cancer where I’d complained of soreness. But there was cancer elsewhere: in multiple bones and lymph nodes. It really was what we feared. We were lost, falling, reeling, grieving.

Within three days I was having a surgical biopsy through my neck to gather malignant tissue and lymph nodes. Within two weeks of the news I had the true sign that would have taken me to a doctor anyway: bone pain in my collarbone area from a fractured first rib caused by cancer breaking through the marrow into the bone.

I’d have found out within a few weeks that I had metastatic cancer anyway when the pain in my shoulder got severe… which is why some doctors don’t even use tumor marker tests. The marker tests don’t reflect cancer activity for everyone. Physical symptoms are usually quite reliable. And let me also point out that a lot of muscular pain can be hard to distinguish from bone pain depending on location. I’ve had both. And it’s not easy to tell them apart in my opinion.

I went and met with my other oncologist a few days after that.
I started chemo within ten days of hearing my diagnosis.
Things moved fast.
Life changed forever.

……

The weather is changing now. It’s warm this week so I don’t think I’ll be reaching for those boots.
But when the cool air comes again in a week or two or more I am not sure how I will feel when I reach for them.
Right now they just make me feel sick.

Six years later: it’s not a miracle, it’s chemotherapy

December 20th, 2012 § 44 comments

Today marks the six year anniversary of the day I was first told I had breast cancer. When the radiologist told me the news, she also said she didn’t know exactly what it was or how bad it was.

This is why you do not schedule mammograms or biopsies right before a holiday. Especially Christmas. You’ll be going on vacation… and if you aren’t going on vacation, the doctors, nurses, and pathologists will.

I was told on December 20, 2006 that I almost certainly had cancer based on the mammogram and ultrasound images. I’d need a biopsy to confirm it. But they couldn’t do the biopsy until after the new year. It’s hard to hear, “We think you have cancer. Now go on your vacation and when you come back we’ll figure it all out.” Weeks later I was told I had extensive DCIS and would need to have my left breast removed. I opted to have a double mastectomy. A few weeks later a second look at the slides revealed I had some breast cancer in one of the lymph nodes that had been removed (I am now a big advocate for a second opinion on pathology). I was reclassified as having stage II breast cancer. I had chemotherapy; later, a salpingo-oophorectomy.

Almost six years later, I have now found out that I have stage IV (metastatic) breast cancer (details here).

Yesterday I went to an appointment with my local oncologist. I go to see him every two weeks right now to review bloodwork and to discuss dosing for the next round of chemotherapy which starts tonight.

The concept of “good news” has been completely redefined since my new diagnosis. There is no cure, so I can’t hope for that. There is never going to be a day I am not aware of running out of time. Now “good news” gets defined as stable disease. If you’re lucky, and the chemo is working, good news can even mean reduced disease. Now I hope for that.

I look at my oncologist’s face when he walks in the room. I scan it for signs of what kind of news day this will be. The day he told me about my metastasis I read his face. When he walked in that day I asked him how he was and he said, “Not good.” I assumed it was something about him, his family. I immediately starting worrying about the bad news he was going to tell me about someone else. But it was my bad news. It was my nightmare.

I never used the word cured. I never said it. And I don’t like when others do with my kind of cancer. I always prefer the technical terms NED (no evidence of disease) which means it may be there, but we can’t detect it with the tests we have done. I don’t even like the term “cancer-free” for my particular cancer… again, there might be cancer there, but just not enough to be detected or can’t be with the tools used.

Five years had come and came and gone. Even nurses in other specialties would say at my checkups, “Oh! Five years! That means you’re cured!” and when I’d explain to them that it actually didn’t mean that at all with my kind of breast cancer they would look at me quizzically.

“SEE?! I told you!” I want to go back to say to all of them. I was vigilant for a reason. It “shouldn’t” have happened based on the statistics, the predictions. But it did. And now the only life I’ve got is spent dealing with it.

……………..

I watched my oncologist’s face yesterday. We’ve had some bloodwork results in the last two months that have been a good first step but he hasn’t been willing to budge much on declaring that this chemo is working. One or two data points are not enough for either of us to feel confident, actually. But yesterday we got our fifth data point.

I still have metastatic cancer. That isn’t going to change.

But I have some news I can finally share: my bloodwork is showing “indisputably” (in the words of my doctor) that my cancer is shrinking. The chemo is working. The pills I’ve been swallowing, seven or eight a day for seven straight days at a time, in alternate weeks, are doing what we’d hoped. The cancer is still there. But it’s smaller. But it’s responding. It’s been consistently trending down since I started on Xeloda. Now, with more than a few data points, we can finally characterize the effect and I can share it publicly.

……………………….

So what does that mean? I know that’s the question most will ask. It simply means this is the chemo I stay on for now. It means that I just keep doing what I am doing. I’m not “cured” or “feeling better” or “cancer-free.”

It means that modern science and pharmaceuticals are giving me some time. For today, the cancer is responding, shrinking. And in the land of stage IV cancer, that’s unmitigated good news. Make no mistake, it’s no Christmas miracle. It’s not happening for any other reason than the fact that I am aggressively taking as strong a dose of this drug as I can tolerate, and it’s doing its thing.

Six years ago I went on Christmas vacation and feared for my life. I was scared and confused and miserable. Now, six years later I’m in a much worse place vis-a-vis cancer but my mindset is different.

I’m coming to terms with accepting the life I have — the one I thought I’d have is gone. I have created a new one. The best one I can.

For today, I celebrate the good news. I will go to my children’s school holiday parties. I will smile. I will make memories. I will not focus on side effects. I will find beauty in something small.

I will savor the things I can do today.

49 years and counting

December 25th, 2010 § 7 comments

My parents, on their honeymoon, in 1961:


On October 24, 2008 the Bonchek College House at Franklin and Marshall College was dedicated. The building is a dormitory and part of the new residential system at my alma mater. On that night I stood and spoke about my parents; I wanted to show the personal side of these two wonderful people.

It was easy to write about my parents. They are both unique and talented individuals, and it is with great pride that I introduce them here to you. On Christmas Day, forty-nine years ago my parents were married. Staying married for forty-nine years is an amazing accomplishment; however, it is only one of the many ways my parents have been role models for me.

I struggled with how to honor my parents and their anniversary. Of course, the best way I know how is in writing. I re-read the speech I gave at the dedication and decided to share it here in honor of their special day. Mom, Dad… I never forget how lucky I am. I never forget what you have given me both in sacrifice and by example. It really is an honor to be your daughter.

Here is the text of the speech I gave, as it was written:

On Halloween night 17 years ago, my life changed. On that night, my best friend Alex Welch and I attended a costume party at Chi Phi Fraternity, right down the street. On that evening, she introduced me to a Senior on the swim team, Clarke Adams. Coincidentally, he had lived in South Ben1 during his time here, and we hit it off instantly.

Six years later, we were married here on campus in Nevin Chapel. It really does feel like things have come full circle to be here with my parents and my family to see our family name here on this building.

F&M obviously holds a special place in my heart for the people I met here. Franklin & Marshall also nurtured my mind as well. My education here, particularly the dedicated instructors in the Sociology department… Carol Auster, Joel Eigen, Katherine McClelland, and Howard Kaye, along with many others, really pushed me not just to learn, but to think. And if you know how to think, you can learn anything.

One person here really touched my mind and heart and though he’s miles away I would like to mention him. Professor Joel Eigen, my friend for 20 years, is away on sabbatical in Australia. As a high school senior here in Lancaster, I took one’s of Joel’s sociology classes. I then went on to Cornell University where I realized that the experience I had in Joel’s classroom really was true education, and I didn’t want to waste my remaining college years without that.

I transferred here for my last 2 years and worked with Joel as research assistant. He was a professor, a mentor, and a friend– all of which are still true today. I was in touch by email with him early this morning and told him how much he exemplifies the nurturing of the mind and person that happens here.

This coexistence of the head and heart applies not only this fine institution, but also to that of my own personal faculty– my parents.

My father, as those of you who know him can imagine, focused first and foremost on training my mind. At every opportunity, my father has been– and is– a teacher, an instructor, an educator.

When I asked my daughter Paige what she thinks of first when she thinks of Grandpa she said, “How long his answers are when you ask him a question.” That is certainly my father.

What her comment shows is that my father prizes knowledge– rational knowledge in particular. He takes the role of parent as a teaching one. He did this when I was 3, and he still does it now that I’m 39.

Now as a grandfather to 5 grandsons and 1 granddaughter, he still uses every opportunity to inform others. He is brilliant on a wide range of topics. He is, quite simply, the smartest person I know. He is also a clear and thoughtful writer and editor.

But what you may not see evidence of as easily is my father’s tenderness, his kindness, his softness. The experiences of the past two years have brought me evidence time and again how supportive, how giving, how dedicated my parents are, and given me countless opportunities to see the gentle side of my father.

I spoke at the outset about how my life changed when I met Clarke here all those years ago. Almost two years ago my life changed again when I was diagnosed with breast cancer. When I found out I needed chemotherapy as part of my treatment, my parents came to Connecticut for each round. They took care of not only the day-to-day parts of child care, but also the love and nurturing of my children that I could not do in the way I was used to.

On the morning of my second round of chemo, my hair began to come out in clumps. I had been waiting for it to happen, and I was ready. With the same electric clippers I used to cut my two sons’ heads, I went into the garage and started shaving it off. But I could not reach the back properly. I came in the kitchen and asked him to help. With quiet and serious strength, my father finished the job for me.

In my darkest moments, my most painful and distressful ones, it was often my father’s comfort which was the most touching. And when I think of the last 2 years, I am lifted in large part by the love and tender care my father has given to me.

He came to every doctor’s appointment. He changed my bandages after my surgery. And in a true display of love and confidence, he trusted me to make all of the medical decisions myself, and never told me what to do.

Dad demands the best from those around him. He inspires others to want to do their best in his presence. But for those like me who know him well, we know that his serious exterior hides a sensitive and loving father and grandfather. I feel fortunate to have him “on my team” and for the loving relationship we have today now that I am grown. No matter how old I get, though, I will always be his little girl.


My mother’s public and private selves, on the other hand, have always been more congruous than my father’s. My mother is a softie through and through. It’s easy to see why he chose her to be his life partner. In addition to her selfless nature, she is  smart, insightful, funny, supportive, and most of all, patient. My mother and I have a wonderful bond, a great connection. To this day when we say goodbye to each other at the end of a visit, we can’t look each other in the eye because we will both start to cry. Even now you will notice I am carefully avoiding her gaze.

We try to be strong for each other, but we don’t always do a good job. Our biggest problem is that we try to protect one another from harm, from trouble, from stress. My mother has often been overshadowed by my father’s strong presence. But those who have had the gift of her professional advice as a psychologist over the years know that she is a talented therapist and a caring listener. Quite simply, to know my mother is to love her.


My parents have taught me great lessons. About moral standards, about confidence, about sharing the rewards of hard work. These are lessons my husband Clarke and I share with our three children. I never could have dreamed that on that night 17 years ago I would be here today, with my family celebrating this building and the people who made it possible.

Speaking about one’s parents is not hard– my brother Mark and I have been talking about my parents behind their backs for our whole lives.

On the other hand, speaking about one’s parents in their presence is a different story altogether. Rarely are we given the opportunity to compliment them in a public forum while they are still alive. I am thankful to have that opportunity today.

A good education provides a strong foundation for a person’s head and heart. A liberal arts education here at F&M nurtured my whole being, and allowed me to emerge with a stronger sense of self, of who I was in the bigger picture.

Similarly, my parents nurtured both my mind and my soul to instill the importance of education, of giving back to one’s community, and an appreciation for the role that social interaction can have on transforming the individual. The Bonchek College House is a perfect legacy for our family.

In closing, I would like to let you know that the Bonchek College House really is a dream come true for my family. After all of these years, we finally have a group of people consistently spelling our last name correctly…

I love you both.

………………

So, congratulations, Mom and Dad, you made it to 49 years. Here’s to many more.

xoxo

  1. the name of Bonchek College House prior to its renovation []

Just a word

December 20th, 2010 § 22 comments

Four is just a word. So is three. But once again today I will change one word on the welcome page of my website.

“It has been three years since hearing the words ‘You have cancer,'” the first sentence says.

And now, today, it becomes four.

I think about days like the one four years ago — days that start innocently, normally, benignly. In the hours leading up to the mammogram I wasn’t worried about anything.

I think about the sentence that changed my life.

I think of where I’ve been, where I am, where I am going.

I think of those I’ve met along the way: new friends, doctors, nurses, strangers.

I think of those who have died from cancer and other causes since I was diagnosed.

I think of the progress we’ve made and the distance we have yet to go.

I think of what today might bring, and tomorrow.

And then, in a sudden reversal, I stop myself from thinking too much.

“It’s time to go live my life,” I tell myself. Thinking is good, but only so much.

“It’s time to go live my life,” I tell myself…

Right after I change that one word.



To read about the chronology of my diagnosis, go here.

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