The genesis of the radio journal about my year fighting breast cancer was a conversation with my husband Ed, just after my diagnosis in late fall of 2005.
This picture was taken one week before Dina was diagnosed with breast cancer.
I had just started doing freelance arts reporting for Capital Public Radio, but my diagnosis was clearly going to stop any new, non-cancer related endeavors for the immediate future.
One of the most valuable things during the days after my diagnosis was when friends or friends of friends who had already had breast cancer shared their experiences with me.
Also, with breast cancer being at nearly epidemic proportions, there is a plethora of useful and helpful factual information out there but much of it is presented in a way that is removed from the difficult emotional experience of the disease.
So, weaving all of these factors together, Ed and I talked about how maybe this was my opportunity to make a difference … to make lemons into lemonade by somehow being a kind of breast cancer big sister for women I would never meet who would come after me.
Part 1: Diagnosis And Support
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Part 2: Surgeries And Surprises
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Part 3: Coping And Chemo
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Part 4: Radiation, Relief, Resolutions
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Having a rare night out during treatment to celebrate Dina's 40th birthday.
BLOG POSTS
Being Brave
While fighting cancer people often comment on how brave and courageous you are.
While I am a firm believer in taking all the compliments you can get when you look and feel like @#*%, this particular compliment never rang true for me. Real courage is when you are intimidated by something and voluntarily choose to do it anyway. What I felt was simply determination.
I did not feel that there was any choice but to treat my cancer aggressively. So, there was really no bravery involved at all. Not that I was always Miss Perky. Moments of doubt, depression and anxiety are a normal part of the emotional roller coaster that accompanies any serious disease but the overall colors of the experience are determined in large part by choice.
Cancer treatment is not fun but it sure beats the worst case scenario alternative if you choose no treatment at all.
Cancer and Kids
More and more women find themselves with a cancer diagnosis and children, maybe even little ones.
According to the National Cancer Institute's 2003 data, breast cancer rates in women between ages thirty and thirty-nine is 1 in 233 and 1 in 69 in women between ages forty and forty-nine.
This was truly one of the most daunting parts of the experience for me and my husband. How can I be the toughest fighter possible against the cancer while keeping my children's life as normal and happy as possible?
Just after my diagnosis we began to look into how to tell our children, then ages two and six. There are many resources out there for dealing with these issues - books (both for parents and picture books for children), on-line information, social workers and counselors at cancer centers and other treatment facilities, etc. We used these as well as simply trying to find the best presentation to match our kids' personalities.
We realized after some thought that what worked for us was that we had to be honest and about what was going on at a level that was age appropriate.
We began with a basic explanation of the fact that I had a disease called breast cancer which involved some of the good cells in my body going a little nuts, growing too rapidly and making a "lump". We then emphasized the following points:
1. It is not contagious.
2. Mommy will get better.
3. It is not their fault.
Our son, Noah, while only six at the time, loves science, so we knew that a certain amount of scientific explanation would be interesting to him. He is also pretty emotional so we also wanted the scientific information to be comforting, and talked about it that way.
Our daughter Maya was only two at the time. My husband's initial inclination was to tell only Noah about what was going on. For me, this felt wrong. My cancer was going to effect Maya just as much as the rest of the family. I also thought that by excluding her from the conversation we would make it seem even bigger and scarier to both children. We agreed to tell them both together, with a combination of factual and emotional information, some of which we knew would too complicated for a two year old to understand. But, it was our first acknowledgement of the situation as a family and it set the tone for the life of our family for the next year.
For us, it was important to use the word cancer instead of euphemisms like "sickness". We knew that we could not protect them from this word so decided to remove some of its power and therefore terror by casually using it just as an accurate description; nothing to be feared.
We also told the children's teachers so that they could be watchful for any questions or unusual behaviors.
We prepared the children for my impending baldness by talking a lot about it, cutting my long hair in stages to minimize the dramatic impact, and promising to let them decorate my head with (washable!) markers.
Finally, deep in my heart I promised myself that I was going to beat this thing and be OK, all the time hoping that this conviction would be implicitly passed along to the kids. (We knew early on that my cancer was most likely beatable so I in no way want to suggest that, for those for whom cancer is not survivable, that they somehow didn't fight hard enough.)
It is easy to forget in the midst of one's own anxiety, the anxiety and responsibility that can be felt by young children.
My daughter, now 3 ½, still plays "chemotherapy" with her dolls.
Statistics Are Only Numbers
When I was first meeting the doctors that would determine the course of my days over the following year, several threw out the statistic that I had an 80% to 85% chance of surviving 5 years.
While this information was given, I believe, in the spirit of encouragement, I found it terrifying and unacceptable.
Each time a doctor told me this statistic, I would burst into tears, saying that I had a two year old! I wasn’t willing to talk about 5 years. I needed to be talking about 20 years. While 80 to 85 percent sounds pretty high, so does the 15 to 20 percent that do not survive the five years. At some point I had to decide that this statistic was just that, a number and that it didn’t have to have any bearing on me or my attitude.
Ed's Emails
"After my breast cancer diagnosis I realized that we had to tell friends and family."
I was simply not up to phoning people all over the country and having to tell the tale over and over again. Nor did I want my children to hear me talk about my cancer repeatedly. I decided an email was the best way to communicate and my husband Ed offered to write the initial message. His periodic updates spanned the course of my treatment.
The emails served as a communication vehicle with those we care about, a source of strength for me as people replied, and (perhaps most importantly) a therapeutic vehicle for my husband to express my condition along with his thoughts and frustrations throughout the year. Ed's first and last emails are included here.
Your First Diagnosis...
…might not be your last. It may not be clear from the radio piece, but what in part made my experience so emotionally difficult was that my diagnosis got substantially and unexpectedly worse mid-stream.
When I was first diagnosed I thought that I had, if you will, the best case scenario within the bad realm of having breast cancer. I was told I had the most common kind of breast cancer (invasive ductal carcinoma) and a smallish tumor at that. During my first surgery, a lumpectomy, my condition was revealed to be a combination of two types of breast cancer, (both ductal and lobular carcinomas), and my tumor was, in fact, quite large. This dramatically changed what I was up against, not only medically but also emotionally.
My understanding now is that this is a not uncommon occurrence. Yet, when you read the books, this scenario is rarely discussed or appropriately stressed, in my opinion. The impression you get from the materials is that you get your cancer along with a neat little note about its grade and stage and everything proceeds tidily according to plan. While this would be nice (especially for a planner like me!) it is, simply, not always the case.
Why Would Anyone Want To Do This?
Like most cancer patients, when I was diagnosed, I was in a state of shock. I asked myself “why me?” and “how did this happen?” and I was dismayed by the knowledge that I would never actually answer these questions.
For Ed and me, the subsequent question then became, "how do we get through the next year?" With two small children, no family nearby, and a lot of treatment ahead, we had to begin to confront some tough questions about our own competencies, both practical and emotional. Looking back now, it was one of the scariest parts of the whole ordeal; the not knowing - neither outcome nor process.
To begin, we first had to evaluate what we did know. What we knew is that attitude would play a big part in how the year went. To that end, we knew that I do much better, at everything, when I have a plan and that I thrive when I have a project. Finally, we knew that, probably partly due to my acting background and partly due just to my personality, I am a fairly open person, possibly to a fault. So, we knew, in general terms that the more opportunities I had to connect with people throughout the treatment ordeal, the better I'd be.
My idea was to do a radio journal about my experience. After coming up with the idea I immediately pitched it to producer Paul Conley at KXJZ because I thought that if I waited I might well chicken out. Paul ran the story idea by Joe Barr, the station's news director, and they got back to me quickly with their positive response. I was, frankly, surprised by their enthusiasm. And then freaked out that I had really committed to doing this thing.
What made this project possible was Paul and Joe's absolute support as well as the creative freedom they gave me to approach the project as I chose. They met with me in Joe's office, sat with me while I cried, lent me the necessary recording equipment, and then stepped back.
Paul and I talked only very infrequently during the year of my treatment. Yet it was the knowledge that Paul is both a terrific editor and a truly nice guy that allowed me to be completely emotionally honest as I recorded my thoughts and experiences. I knew that, both as a person and as a professional, he would not be judgmental and that he would respect my wishes when it came to the creation of the final piece.
Though I didn't know it while sitting in Joe's office a year ago, it became clear to me soon after what my assignment for myself had to be: when I was most afraid, it was time to turn on the tape recorder - the first scary weeks after diagnosis, in the waiting room just before double mastectomy surgery, sitting in the infusion room chair about to receive my first dose of chemotherapy. And then, in between, just chatting, sharing my thoughts and feelings as well as those of family, friends and doctors.
ONE YEAR LATER
Addendum: One Year Later
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Listener reactions to Dina's Diary
I was in the kitchen today making my very first-ever batch of matzo ball soup for my best friend when I decided to turn on the radio for company and heard Dina's story. I had to pause often to wipe tears with a handy paper towel. With every word I recalled the chapters in my friends life since she was diagnosed with breast cancer in the fall of '06. She has been in treatment since October of that year and has been in constant treatment until just a few weeks ago. I relived every corner of my friend's care through Dina. The disbelief in diagnosis, the belief it would only be a lumpectomy, the seeming brutality of two separate biopsies. We researched and planned and quizzed but it was a blessing not to know much of what was ahead. Chemo, a double mastectomy, a radical reconstruction decided upon because of the inevitable radiation. Then a drug trial that finally kicked her butt. The decisions to be made seemed endless and painful, but the hand-holding was constant. My friend is also blessed with love and support. Through all of this, she's felt lucky and in the best possible hands at UCSF. We're hoping she can share a long life with her pride and joy, two beautiful daughters. As her nurse has said, the "healing clock" doesn't really start ticking until all treatments are over. So tonight we'll share another meal before her now 7pm bedtime rolls around. I'm going back to tend to those mysterious matzo balls. I hope she'll be proud of me. All the best Dina. Continue to live your life as if taking in every luscious taste of that hard candy.
Naomi - 1-26-08
I have been listening to NPR for about three years and your story was easily the most moving and memorable of them all. As a father and husband, I thank you for telling it. I think everyone would benefit from listening to it. While only Dina knows the pain she suffered, I could almost put myself in her shoes for that brief hour moment. And that I think is the most important thing, letting people know the story from the other side. Thanks Dina.
Matt S - 1-24-08
I thought that story was beautifully told. I hope the best for you.
Steve - 1-23-08
So raw and real! There are so many elements of your story that have affected me. One; my grandmother was recently diagnosed with breast cancer and because of her age the drs.' opted for a double mastectomy. While concerned with her initial diagnosis of 'cancer' (which is now in remission), i don't feel that i, or anyone else in our family has empathized or comforted her in a way that we should have. i think the general consensus was, at her age just losing your breasts... not a big deal. i thank you for your story and will be checking in on her tomorrow. losing your breasts, or any part of your body, is clearly a traumatic experience. secondly, the support of your friends and family, mostly your husband, have inspired me to give very thoughtful and careful consideration to whom i share my life with. its not a subject to be taken lightly. congratulations to you for your struggle and survival, and many thanks for letting us listen and learn.
Whitney - 1-23-08
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