Name: Ann D.
Age: 65
Occupation: Musician (violist with Hartford Symphony)/Executive Director of CONCORA/writer (Senior Editor at Polyphonic.org)
Date of diagnosis: 10/23/09
Type of diagnosis: infiltrating & in-situ carcinoma in the left breast
Date of last treatment: Mastectomy was 11/27/09; final silicone implant was 4/30/10. I’m still taking Tamoxifen and seeing my oncologist. I have another 4 ½ years to go with this drug.
What events led up to your diagnosis, or, how did you discover what you were suffering from was cancer?
A mammogram. (I had scheduled a mammogram in 08 and had to cancel, and just never got around to rescheduling, so I missed a year. Not a good idea!)
What were your main concerns after being diagnosed?
I’m a professional violist, and I was very concerned about whether I’d be able to play. (Turns out I was unable to play for 8 months, as the expander was exactly where my viola’s shoulder pad rests on my chest.)
Also, my father died of cancer at 57, so there was concern about the family history.
How did your family react to the news?
With grave concern but lots of support. My husband was a rock. My mother and younger sister insisted on coming to New Haven to be here when I had the surgery.
How did you cope emotionally?
The lack of information I received by everyone was astonishing. When I went to the plastic surgeon’s office to sign the consent form, I assumed I’d be given some information about post-operative procedures, what to expect, etc. NOTHING. I was stunned, and burst into tears. The receptionist was very sweet and told me that she’d had a double mastectomy and I’d be fine, but that didn’t really help.
What is the underlying message or takeaway you learned from your experience with cancer?
Patients need information. Lots of it. Given in a user-friendly fashion. What to expect, how long, etc.
How important was your relationship with your nurse/caregiver?
Not very. I didn’t have a specific caregiver, and I have a very strained relationship with my oncologist. I experience occasional incapacitating side-effects from Tamoxifen (severe GI distress) and she refuses to accept that it’s caused by the Tamoxifen. So I self-medicate – I simply stop taking it for a while when the symptoms get bad.
The first emotion when finished with active treatment?
I never had to go through chemo or radiation, so N/A.
How has cancer affected your outlook on life?
My cancer was never life-threatening, and the treatment was very direct, so it hasn’t affected me in the way it would others. I don’t consider myself a “survivor.”
When I was 33, my boyfriend died of testicular cancer, which had a 95% cure rate back then (1984). I thought about all the horrid treatments Daniel had to go through, for naught. My treatment for cancer was nothing, compared to what he went through 30+ years ago.
What was your first reaction when you were told that you had cancer?
When I had the ultra-sound that confirmed the tumor, the technician, a woman of about my age, looked at me and nodded, indicating that it was probably cancer. She then said, “You know, in this day, cancer isn’t a death sentence; it’s really just a major inconvenience.” I loved that statement. In a few minutes, when the doctor who’d been looking at my pictures came in, I had to reassure him that I was OK. I guess he was used to people falling apart. When I’d come in for the ultra-sound, I’d looked at the mammogram X-ray, and it was pretty obvious that there was a tumor. In fact, it was so large they had no choice but to do a mastectomy. (Again, don’t miss a year in having a mammogram!!)
How did you find the strength to go through the treatments?
Not relevant, though I hate Tamoxifen. It’s hard to keep taking it.
What did friends or family members do or say that meant the most to you?
I need to tell my story – this is the most important part of all that I’ll write. I received no helpful information from either my oncology surgeon or my plastic surgeon that I could take home. They are both lovely people, totally competent surgeons, and I’m terribly fond of them both. BUT.
I described above how I went to sign the consent form at the plastic surgeon’s office and fell apart when there was no packet of information for me. I drove home and turned on the radio. Faith Middleton on the local NPR station was interviewing Marisa Acocella Marchetto about her graphic book, “Cancer Vixen.” It was a driveway moment – I couldn’t believe my luck in hearing this. Marisa had breast cancer in NYC with no insurance, and before they could do a DNA analysis of the breast tumor (this is what saved me from chemo and radiation). She created a book of cartoons about her treatments – about how she decided which designer shoes to wear to various chemo treatments. I LOVE THIS BOOK! (I have given this book to many friends, male and female, who have been diagnosed, and all have loved it.)
That same afternoon, feeling a bit better, I went to my porch and found a large box from my childhood friend from Boston, who was an oncology nurse at Brigham Women’s at the time.
Inside was everything that Brigham Women’s gives to their breast cancer patients about to undergo surgery. The 3 most important were:
- A book they published with all the information I craved. Lots of simple diagrams. An explanation about those drains that look like hand-grenades, and what to do with them.
- Cancer 101. An invaluable organizer for cancer patients that helps you keep track of everything as your mind is reeling. I have given this to many, many people. Whenever I hear that someone has cancer, I order them a Cancer 101 set.
- A Jacquie. This is a jacket, designed by a cancer patient, that has many pockets (for holding those hand-grenade drains) and everything closes with Velcro. I lived in this thing for 2 weeks. I left the hospital wearing it, went to a diner to have lunch with my mother and sister, and just didn’t take it off until I got rid of the drains. A simple garment, designed by someone who’s been there and saw a need. It was a life-saver for my sanity and dignity, while recovering.
I was APPALLED that none of my three doctors (2 surgeons and oncologist) knew anything about Cancer 101 nor the Jaquie. My friend in Boston knew just what I needed and her hospital was able to provide it. Her “care package” was amazing – everything I needed to be calm about the upcoming surgery and procedures was all explained, I had tools to prepare me, and a wonderful friend to talk to about it.
In terms of how cancer has changed my life, I am totally open to friends who have cancer, to talk about it. As I said, I always order a Cancer 101 kit for them, and send a copy of “Cancer Vixen.”
When one of my colleagues in the symphony was diagnosed with the same cancer that I had, I took her out for a 3 hour lunch, where I explained exactly what would happen – all the stuff that I would never have known if my friend in Boston hadn’t come forth. My colleague was greatly relieved. I decided to find her a Jacquie – Saint Raphael’s hospital in New Haven did know about Jacquie’s, and when I explained why I was there, they just gave me one. I was overwhelmed. (I had mine cleaned and gave it to my plastic surgeon, asking him to pass it on.)
I hope this helps. The information bit is what I consider critical. Information makes people strong. Knowing what to expect makes a procedure non-scary.
