When Cathy McClain Kaplan was diagnosed with breast cancer in 2002, she saw an opportunity to educate and inspire others about her journey. During her year of treatments and recovery, she wrote weekly e mail updates to a community of family, friends and other breast cancer survivors (whom she calls her Bosom Buddies). Her e-mails are now collected in her upcoming book Cancer Dance, a diary of one woman’s fears, discoveries, resilience and humor. The following is an excerpt.
From: Cathy Kaplan
Subject:Update #1 (10 days after diagnosis)
Date:6/22/02 12:51:27 PM PST
This is the first of my status reports from what I call Cathy’s Cancer Trip. Please don’t be offended by the humor-I am actually quite okay with this and it seems to be bothering others more than me.
I’m either lying on the beach in Encinitas or pottery shopping in Tecate, Mexico, as you read this. What? How can she do that? Isn’t she supposed to be miser able? Why hasn’t she had surgery yet? Is she crazy? Those of you who have known me a while know the answer to that last question. Yes! Crazy, but not stupid. have seen several doctors and had several tests already. am now waiting for my appointment with the surgeon have chosen. That will be Wednesday June 26th. Meanwhile, my fiancé Charlie and I had this vacation planned already, so why not go and enjoy my last chance to shake loose for many months.
Dr. Susan Love’s Breast Book, 3rd Edition is an excel lent resource for breast cancer information. It is my main textbook as I research surgical and treatment methods. If you have boobs, get this book. She covers every aspect of breast care, not just cancer. According to Dr. Love, at this stage I have already had this cancer for more than five years. Taking the time to get the treatment I believe in with a surgeon that I trust is more important than rushing to the operating table.
Breast cancer runs in both sides of my family, so I have been watching my fibrocystic breasts for many years. (I guess some men have been watching them too.) In 1984 I had a surgical biopsy on a lump that was blocking my milk ducts as I tried to breast-feed. Tests showed it was simply a benign cyst. One year later, my mother was diagnosed with the exact same cancer I have. She had a modified radical mastectomy, chemotherapy and hormone therapy. She is healthy to this day and is by my side as I go through this.
I have been watching this recent lump fairly closely for the past year. My last three mammograms were only six months apart. The problem with fibrocystic breasts is they don’t mammogram clearly. Everything looks suspicious, even healthy tissue. I have my new gynecologist to thank for insisting that an ultrasound be done. She isn’t familiar with my lumps, and when I went for my annual exam she didn’t like the way the lump felt. I was used to it, so I wasn’t worried. The ultrasound was suspicious. The lump did not have a uniform shape like a cyst. May 15th was my ultrasound, June 10th was my needle core biopsy, and June 12th I received my diagnosis. I have invasive ductal breast cancer (the most popular type). Fortunately, it is a slow growing form of cancer. Prior to my biopsy, the tumor was 1.2 cm. Now, after eight needle core samples have been removed, I don’t know what size it is. We won’t know whether or not I have stage I or stage II cancer until after the lymph node(s) under my arm are evaluated during my surgery. (Stage I means the tumor is smaller than 2 cm and has not spread; stage II is a tumor larger than 2 cm or one that has spread outside the original tumor). I had a bone scan on June 21st, and my bones appear to be clear of any cancer.
Since the removal of multiple lymph nodes can lead to lymphedema, a swelling of the arm, I want to avoid losing too many of them. As a sign language interpreter, 1 don’t know if I could still interpret if I developed this condition that limits arm movement. However, we won’t know if the cancer has spread to my lymphatic system unless the nodes are evaluated. For this reason, L have agreed to participate, if I qualify, in a new clinical trial at my cancer center in Sacramento. The sentinel node biopsy procedure offers the chance to evaluate a single lymph node first and possibly avoid removing any scan on June 21st, and my bones appear to be clear of any cancer.
Since the removal of multiple lymph nodes can lead to lymphedema, a swelling of the arm, I want to avoid losing too many of them. As a sign language interpreter, 1 don’t know if I could still interpret if I developed this condition that limits arm movement. However, we won’t know if the cancer has spread to my lymphatic system unless the nodes are evaluated. For this reason, L have agreed to participate, if I qualify, in a new clinical trial at my cancer center in Sacramento. The sentinel node biopsy procedure offers the chance to evaluate a single lymph node first and possibly avoid removing any others. In this surgery, a dye is injected into the tumor and the doctor watches to see which lymph node the tumor drains to. This node is the sentinel node, the node that can be watched to monitor the spread of cancer. The probability that cancer has spread to this node before any others is very high. When the sentinel node is dissected and tested for cancer, if none is there, then no more lymph nodes are removed. If cancer is found in the sentinel node, then all my lymph nodes will be removed and many of them examined (major bummer).
Since the size of my tumor is so small, I have opted for a lumpectomy and radiation therapy instead of a mastectomy. I don’t like the idea of radiation therapy, but I am quite fond of my nipple and would like to keep it. Some say the younger you are, the more aggressive the cancer is. For this reason, chemotherapy is recommended. All I know is there is a 30 percent chance the chemotherapy will prevent the cancer from becoming active in other parts of my body in case it has already spread. Since the life expectancy for someone with metastasized breast cancer is less than five years, I don’t want to take any chances. Knowing the history of cancer in my family, I would rather lose my hair than take any chances of losing my life. At this time, I am choosing to do chemotherapy.
Many questions are still unanswered and I will know more after my appointment with the surgeon on June 26th. By then I should know if I qualify to participate in the clinical study. I will know my surgery date. As I learn more, I will let you know.
I have already received so many wonderful cards and messages from my friends and family. I feel totally supported (and maybe a little smothered) but considering the C-word is involved, it feels good to do an inventory of all the lives I get to share in. Life is good, and I plan to enjoy every last minute of it.
Thank you for being there for me. I will send another update after my appointment with the surgeon.
Love, hugs and smooches to all of you.
From: Cathy Kaplan
Subject:Update #2 (2 weeks since diagnosis)
Date:6/28/02 03:16:27 PM PST
It has been so wonderful to hear from so many of you. I have people from all religions praying for me. That should mean I am covered in every corner of heaven.
After my peaceful R&R in Encinitas, California (not Ensenada, Mexico, as some of you thought, but far more beautiful) I hit the road running. I had an appointment with my oncologist Wednesday morning and discussed chemotherapy options. We won’t make decisions until after the tumor and lymph node are evaluated, but the popular course of action these days seems to be AC (Adriamycin and Cytoxan) with a possible follow up of Taxol. (There is a quiz at the end of this e-mail, so pay attention.) My mother received CMF treatments (Cytoxan, methotrexate and 5-fluorouracil) in 1984 and did not lose her hair, and I was hoping to follow the same course of action and save my hair. Alas, that was 16 years ago and much has been learned since then. Today AC has a bad rap. The oncologist says it is now given in lower doses than before, so it shouldn’t be a problem. One way to avoid problems with my veins’ reacting to the chemical is to have a port and catheter inserted into my chest so I won’t be poked dozens of times in the arm with needles for blood tests and chemo treatments. I will probably choose this method, as my arms are precious to my career (and hugging my nieces).
Wednesday afternoon I met my surgeon at my cancer center. I call him Papa Smurf. (Remember the cartoon?) He was wearing Smurf-colored scrubs and stood well above six feet tall (anything over 5 foot 9 inches is tall to me). What a sweetheart, and better yet, extremely experienced in the sentinel node biopsy procedure. I will be receiving this procedure for my surgery; however, I will not be participating in the clinical trial. The trial involves selecting some patients at random to have the sentinel node biopsy, with others having the sentinel node evaluated along with other nodes. I want to make sure I keep the chance to have only a single node removed, so I am not going to participate in the trial. I apologize to future breast cancer patients for my selfish decision.
As excited as I was to learn that I will be getting the surgery I chose from the surgeon I selected, my balloon soon burst when I heard the surgery date: July 16th. My heart sank. For the first time since I heard of my diagnosis, I could feel depression setting in as the day wore on. That would be 36 days after my biopsy. My tumor is so close to my lymph nodes already, and the biopsy did a lot of destruction: I was worried that would be too long to wait, worried the cancer would certainly spread. The next day I was e-chatting with a sister-survivor who informed me of some statistics regarding the timing of surgery. She told me that having surgery within 28 days of biopsy appears to be the timing for greatest success. Encouraged by her info, I sent a fax to my cancer center explaining my concerns and mentioning the 28-day window. Papa Smurf came through for me. The next day I received a call from his office saying my surgery had been moved up to July 8th, exactly 28 days post-biopsy. It will be at 6:00 pm-evidently Smurfs work overtime. I know, it is only eight days’ difference, but those were going to be the longest eight days of my life. (The moral of this story is to take charge of your medical treatment, and don’t be afraid to ask for what you believe in.)
I head up to Charlie’s home on Sunday, July 7th, as he lives closer to my surgeon in Sacramento. I have outpatient surgery on Monday, July 8th, and then recover for one week. If my lymph node shows signs of cancer, 1 will go back into surgery a few days later to have the rest of my lymph nodes removed. (This is the prayer part.) I will begin chemo treatments soon after.
If you would like to shower me with gifts, you can send them to Charlie’s house. Otherwise, e-mail messages are absolutely cherished.
Now for the quiz and survey…
1) What type of chemotherapy treatment did Cathy’s oncologist recommend? a. CMF b. AC or c. AC/DC? 2) Who is Cathy’s favorite surgeon? a. Papa Murphy b. Papa Smurf or c. Papa Pill?
Cathy is wigging out. What color hair would you like to see her in? Brown, dark brown, black, blonde, gray, red, platinum or wavy gravy?
More e-mail updates after surgery.
Cathy Kaplan is a performing artist, sign language interpreter writer, dancer and photographer. For the past 16 years she has worked as the disabilities services program manager at Lawrence Livermore National Laboratory and was appointed by former Governor Pete Wilson to the California Governor’s Committee on Employment of People with Disabilities.