It has been a very long time since I have written a new post on my blog. Nancy Stordahl who blogs at Nancy’s Point presented a summer blogging challenge. Never one to back down from a challenge and needing to get back into my blog, I decided to go for it! Thank you, Nancy, for this challenge to answer 10 random cancer-related questions. So here goes:
1. Share anything you want about your cancer diagnosis (or your loved one’s). Share your age, cancer type, stage, when you were diagnosed, family history (if any), your reaction, how you learned the news, or whatever you’re comfortable with sharing.
I was diagnosed when I was 58 years old, October of 2004, with Invasive Ductal Carcinoma, Stage IIB, Her2+, Lymph nodes negative. My mother was diagnosed with breast cancer when she was 58 years old in 1978 and passed away at 66 years old from a pulmonary embolism secondary to Metastatic Breast Cancer. She was my best friend and I lost her when I was 38 years old. She had a lumpectomy followed by radiation that turned her breast and arm into brown parchment paper. I do not believe there was any margin checking or lymph node biopsies, but so much of that time was a blur that I can’t honestly remember many details.
As for me, I discovered my own mass. I had been for my yearly Gyn appointment in July where nothing was detected, but by October, I had a 3 centimeter mass. I was sent for a mammography (it had been almost a year since my last mammography.) Immediately, following the mammography, I was rushed into utra-sound where the sonographer immediately went to get the radiologist. She informed me that what they were seeing was “worrisome.” Not the words you want to hear! Everything moved very fast from that point. Next step, needle biopsy with my surgeon.
I was called at work (medical social worker in a medical center working on the oncology unit at the time of diagnosis) by my surgeon’s nurse practitioner. I can remember the sound, tone of her voice, and every word she said. She was very compassionate, professional, and provided me with very limited information. “Your needle biopsy shows abnormal cells.” The surgeon would like to see you NOW. When I attempted to get her to provide me with more detailed information regarding “abnormal cells,” she would not discuss any further. Since I had to leave work and drive 45 minutes to reach my surgeon’s office, I was able to do so with some degree of denial. I mean abnormal cells might mean pre-cancerous cells. Right? Denial can be a wonderful short term coping mechanism.
What is the most outrageous thing someone has said to you about your (or your loved one’s) cancer?
Well meaning friends and family members (who emotionally can’t think in any other terms), telling me and others that “I beat it.” We all know that we did no such thing! Science helped our bodies go into remission, and if we’re lucky (strange word to use, perhaps, but our dear friends dealing with metastatic disease know what we mean), we will remain with no evidence of disease (NED). We are all aware that our cancer can return at any time. Then what? We didn’t beat it, we failed in some way? Didn’t exercise enough, didn’t eat healthy enough, didn’t think positively enough?…The list goes on and on.
3. What is your biggest cancer pet peeve? I know it is hard to choose, as there are many to pick from, right? But what irks you the most?
Where do I start? Objectification, minimization of breast cancer…reducing BC to “saving the tatas,” or any other type of sexist paraphernalia that attempts to make a profit from a potentially deadly disease. Well meaning women who take off their bras in support (ironic?) of us. Really? I just don’t get the connection or the meaning! Their lack of mammary support does not make me feel supported at all. I have no sensation at all in my right “breast,” except for discomfort. Watching other women’s natural breasts being freed (and thank God they have them) does not provide emotional support for me or financial support for finding a cure.
One more: celebrities who make BC look like “a walk in the park,” minimizing for the public the pain, trauma, and severity of a deadly disease.
4. What is something you want others to know specifically about breast cancer?
All women should “know” their own breasts and check at least once a month. This includes a mirror check. Obviously, not all breast cancer presents as a mass that is palpable, and can present (as in the case of Inflammatory Breast Cancer) as a red, swollen, itchy breast that is tender to the touch. Invasive Lobular Carcinoma may cause a thickening of the breast. Any change in the appearance of the breast should be addressed. Breast cancer is not “one size fits all;” there are many different types and treatment is case specific.
Women with breast reconstruction using implants should have an MRI every two or three years following the initial reconstruction to check the integrity of the implant or implants. Although most plastic surgeons suggest replacement after 10 years, a rupture can occur at any time. There are two types of rupture: intracapsular (still within the implant capsule, but will eventually transcend the capsule) and extracapsular (the saline fluid or silicone gel has migrated through the capsule into the breast tissue and into lymphatics and the rest of the body).
5. If applicable, do you worry about recurrence rarely, from time to time or a lot? What is your biggest worry today, right now, this minute?
It has been 13 years since my diagnosis. Time does help reduce the constant worry, but any new strange ache or pain anywhere in my body can still trigger anxiety. The threat of recurrence feels like a “stalker lurking in the shadows.” You never feel completely “safe” again.
Right now my worry is I’m one of those women who did not have an MRI to check on the integrity of my implants for 10 years and I now have an intracapsular rupture. An intracapsular rupture can take 4,5,6 years to transcend the outer capsule, but since I have no particular symptoms (it was detected in a recent MRI), I have no way of knowing how long my implant has been ruptured. I have scheduled an appointment with a plastic surgeon (my original plastic surgeon no longer practices due to an automobile accident) and I am considering not replacing my implants.
6. Do you feel cancer has made you a better person? Yes, I know this is a loaded question. If you do, specifically in what way?
NO, I do not feel like cancer made me a better person. I think I was a good person prior to my cancer diagnosis. It did cause me to re-prioritize my life a bit. I retired from my profession three years earlier than I would have considered without breast cancer. Although my prognosis was fairly good, I wanted the freedom to spend more time with my children and grandchildren. Not all my family live in the same state, and visiting while I was working necessitated vacation scheduling. I was blessed that I had the financial option to retire early, but I made this decision from fear of a fore-shortened life span, not because I wanted to leave my profession.
7. What is your favorite cancer book? (No I’m not fishing for mention of mine!)
To tell the truth I haven’t read a lot of cancer books, although I am an avid reader. During my treatment period (surgery, chemo, radiation, reconstruction) I used all my energy and concentration on getting through each day and continuing to work, except for a couple of days following each chemo treatment. In addition, I was going for monthly massages, acupuncture, doing visualization, meditating, seated gentle yoga, and prayer. After treatment, and before I started blogging and reading blogs, I read Five Lessons I Didn’t Learn From Breast Cancer (And One Big One I Did) by Shelley Lewis. I have always used humor to help myself cope and this book is irreverent and actually funny in places despite the subject matter. One line from the book is “If you honestly think breast cancer is a gift, you can’t come to my birthday party.” I recommended books on meditation and living in the moment in my blog: Going to Pieces Without Falling Apart and Going on Being both by Mark Epstein and Be Here Now by Ram Dass.
8. Besides your family, where do you turn for emotional support?
I was blessed with tremendous support from my employer, co-workers, and dear friends all during the treatment period. Over the years, my friends have always been “there” for me. I have also received much satisfaction from blogging and my public face book page. My fellow breast cancer “sisters” allow me the opportunity to provide information and support. And although I didnt realize when I began both my blog and my public FB page, I have received tremendous support in return.
9. How many cancer blogs do you read and why do you read them?
I read many of the blogs and public face book pages. The blogs I read on a regular basis are Nancy’s Point and The Cancer Curmudgeon. I read them for up-to-date information on research (and varying topics) both for myself and that I can then share with others. I like the feeling of connection with like-minded people. I enjoy the spunk of The Cancer Curmudgeon and seeing how she processes her anger through her writing.
10. Do you call yourself an advocate? If so, what drives you?
I chose social work as a profession to be an advocate for the disenfranchised. Over the years, I worked with home-bound elderly providing mental health evaluations and counseling, domestic violence victims (both in a shelter and in an office setting), provided counseling on adjustment to illness and providing resources as the social work supervisor in a home health care agency, and devoted most of my career to hospital social work. I don’t know how “to be” without advocating. When I realized following treatment for breast cancer that I was experiencing subsyndromal symptoms (not meeting full criteria for a diagnostic category) for Post Traumatic Stress Disorder and was experiencing a strong grief reaction, although I did not have a terminal prognosis, I felt a strong responsibility to reach out to others. The internet seemed the most wide-reaching format to educate others regarding what to expect and, especially, when symptoms are severe enough to require professional intervention. Because social worker is who I am, not just what I did, I know no other way.