Who Can Resist a Challenge?

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.

 

 

 

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The Divine Space Within

“It is in moments of illness that we are compelled to recognize that we live not alone but chained to a creature of a different kingdom, whole worlds apart, who has no knowledge of us and by whom it is impossible to make ourselves understood: our body.”                                       Marcel Proust

“An illness is like a journey into a far country; it sifts all one’s experience and removes it to a point so remote that it appears like a vision.”  Sholem Asch

When I came across these two quotes, I was struck with the truth in both.  After my partial mastectomy (which left me with some skin, nipple, and upper tissue…for which I am thankful), I looked in the mirror and saw not only a mutilated breast, but drains snaking down to my waist filled with bloody fluid. I saw an alien creature with whom I had difficulty identifying. And little did I know that this was only the beginning.  By the time chemo had taken over my body with fatigue that I didn’t know existed, and hair that came out in clumps in my hand, I had the first revelation that I truly was not my body.  I was not the same person physically inside or outside, but I was the same inner self.  The “me” that is “me,” was “chained to a creature of a different kingdom.”  It seemed surreal: my body was “on a journey into a far country.”  To quote a blogger colleague of mine, I was definitely in Cancerland.

The inner “me” began to have compassion for the Cancerland me.  I gave my hair “permission” to fall out and told it I would be okay.  I turned inward as much as possible in prayer, guided imagery, and meditation.   I used my healing bowl on my chest so that I could feel the vibrations of the beautiful tones ringing throughout my body.  I had monthly massages to keep blood circulating in my extremities (with the permission of my doctor) to attempt to mitigate the side effect of neuropathy, particularly from the Taxol.  I had acupuncture after each chemo treatment and a Reiki treatment three or four times during the course of treatment.  The important thing to me was to stay in touch with the “inner me” so I wasn’t “lost” when it was time to return from this “distant kingdom,” this “journey to a far country.”

It has been eleven years since my diagnosis on October 26th, 2004.  I have some mild side effects, both mentally and physically.  Through much research and in connection with many survivors, I understand that once you visit Cancerland, you never totally return; that would not be possible.  The physical and mental trauma is too great.  Good self-care is an absolute necessity for the journey and ever-after.  Be an active participant with your treatment team for your physical and emotional well-being, and be an active participant with the “inner you” to protect and respect that Divine space.  Amen and Namaste

10 Ways To Add The Healing Power Of Water To Your Garden

For me, nothing says Peace like water. The smaller ideas are more my speed and I intend to add one of the shallow water features to my garden under my hummingbird feeder. Also like adding natural products into water features. These things are “doable” for all of us without busting the budget.

Breast Cancer Authority

Water For Healing GardenDawn Bradford Lange:  Co-founder of Breast Cancer Yoga.

Healing gardens express our own individuality. We can show a bit of our personality with ornamentation and embellishments. We create a balance by adding water elements as a symbol of life and enhance the sacredness of a healing garden. Water can be metaphorical of peace, tranquility and calm. Water opens up the contemplative nature of the soul and helps to elicit memories and a sense of belonging. We have provided 10 ideas to add water to your breast cancer healing garden.

1. Water can be incorporated with a fountain as a symbol of the life force (chi, prana). Make your own patio fountain tutorial.Therapeutic Water Fountain For Breast Cancer Healing2. A slow moving stream or creek is symbolic of the river of life and our personal life path. Learn how to make your own backyard stream tutorial.Water Stream For Breast Cancer Garden3. A waterfall is symbolic of a…

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Managing the Negative /Critical Voices Inside Your Head

Reiki Hello to everyone.  It has been a while since I posted in my blog.  In January I started a face book page “Coping With the Trauma of Breast Cancer.”  I wanted to extend my reach to as many women as possible, and face book seems to have the amazing power to “travel” the world.  My blog is connected to my face book page to enable all blog postings to post to face book.  But, to see the face book page you need to be on face book and type in “Coping With Breast Cancer Trauma.”  The page provides inspiration and information on a daily basis and stresses Positivity, Gratitude, Meditation and/or quiet time to be able to relieve stress, worry, and negativity in all forms.  It is a wonderful format for “women in connection.”

Today’s blog post focuses on the NEGATIVE/critical voices inside our heads.  To some degree everyone has them.  As cancer survivors we tend to have these negative thoughts whirling around in our heads.  The slightest ailment, and our minds take us  back to the cancer diagnosis and our thoughts start to tell us that the cancer has recurred.  Worry begins to consume our day and then the angry and depressing feelings and thoughts begin to dominate.  We need to remain vigilant in overcoming these thoughts through gratitude for all we have been given, daily affirmations and inspirations, journaling, connection with other survivors, meditation, time alone in nature that allows us to absorb the wonderful healing energy that Mother Nature provides, and prayer and faith that constantly renews the hope in our hearts.

I recently read an interesting article regarding critical/negative voices in our heads.  I wanted to share it with you because it offers interesting insight and advice in how to think more positively (even regarding the negative voices themselves.)  SO, it is possible, that on rare occasions even negative thoughts can have positive outcomes. Following the article, I will apply what Mr. Bregman has explained to our situation.

Managing the Critical Voices Inside Your Head

By Peter Bregman

At 8:20 am, my twelve-year-old daughter, Isabelle, was rushing to meet her ski group. She was 20 minutes late and stressed – she takes her skiing very seriously and was training for a race in a couple of days.

Near the competition center, she ran into one of her coaches, Joey. He looked at her, then his watch. “If this were a race day,” he told her, with a disapproving scowl, “I would tell you to turn around and go home.”

His words stung and she burst into tears. A few moments later, she was greeted by another one of her coaches, Vicky, who saw how stressed she was.

“Honey, don’t worry,” she said. “This isn’t a race. It’s okay that you’re running a little late. You’ll just catch up with your group on top of the mountain.”

Two vastly different coaches, two vastly different responses. Who’s right? I bet you have an opinion.

But that’s not the point.

My advice to Isabelle? You will have Joeys in your life and you will have Vickys. They will show up as teachers, bosses, colleagues, and friends.

So, I said to her, it’s a good idea to get used to the different responses without getting thrown off balance. You can’t control how people respond to you, but you can control how you take them in and how you respond to them.

But let’s go one step deeper. The truth is, we all have a Joey and a Vicky inside, and they can both be useful. Joey might seem unkind, but his high expectations and low tolerance for failure can be helpful in driving us to be our best. On the other hand, sometimes we need empathetic support. To some, Vicky may appear soft. But her comfort and reassurance can be useful, especially during times of stress.

Here’s the key: Be strategic and intentional about who you listen to – and when – even if the voices are inside your head. In fact, especially if the voices are inside your head. Those can be the sneakiest. It’s pretty easy to call Joey a jerk and ignore him; it’s much harder to dismiss the voice in your head because, well, it’s you.

Try this tactic: when you hear the voices, give them names and personalities. Imagine a Joey on one side, a Vicky on the other.

1. Notice the voices in your head as voices. A lot of the time, most of us simply believe what we hear – either from other people or from ourselves. If your inner voice calls you lazy, it’s hard not to think you’re lazy. It helps if you imagine it’s Joey calling you lazy instead.

2. Resist the urge to judge whether the voices in your head are right. It’s impossible to know and it doesn’t matter anyway. Are you lazy? The truth is that you probably are, in some ways. And, in other ways, you’re not. But that’s not the right question.

3. Instead, think about the outcome you want and ask this question: Is what this voice is saying — and how it’s saying it — useful right now? This is the same question you should be asking if you’re confronted by an actual Joey or Vicky. Is this voice helpful to me in this particular moment? If you think it’ll motivate you, listen to it. If it will demoralize you, don’t.

This is an important skill: the ability to ignore critical voices when they’re destructive, without discounting them entirely. They might be useful another time.

The goal is flexibility. Cultivate a varied group of critics and coaches, both internal and external. Be aware of who is speaking and when you should listen.

Comfort with multiple voices is particularly important if you are a manager. You need to be able to be Joey or Vicky, depending on the situation. Sometimes, people need to feel your high expectations and disapproval. Other times, they need your gentleness and empathy. Don’t default to one or the other. Pause to assess what’s needed and then make a choice.

“It’s hard,” Isabelle told me after we spoke about the different voices and messages they brought with them, “How do I stop from thinking Joey is just a jerk? Or that I’m lame for being late?”

“He might be a jerk and you may be lame,” I said, “but not because he said so. Here’s the question: Will you be more likely to be on time tomorrow because of what he said?”

“Yes,” she conceded. “But it felt terrible.”

“And, when you feel terrible, can you hear Vicky’s voice too?”

“Yes,” she said, beginning to smile.

“Then it’s a good thing you have two coaches,” I told her.

Because sometimes, both voices are the perfect combination.

Originally posted at Harvard Business Review.

Okay, so lets imagine that Joey (or any other name, if you wish to name the negative thoughts) is the negative voice/thought “telling” you that you can’t make it through this surgery or this treatment, that the pain in your back is the cancer recurring, you can’t make long term plans for the future, etc.  You get the point.  Now let’s imagine that Vicki (or whomever) is “telling you all is well, that you’ll “sail” through the surgery or surgeries with absolutely no problems, treatment will be a piece of cake, you never need to worry again, there is no possibility that you’ll ever have cancer again.  One set of thoughts, all negative, the other, all positive.  Just as in the article, we  have both voices inside. “The key is to be strategic and intentional about who you listen to.”  The negative thoughts might be useful at times.  Maybe because of the negative thought we will do more self-examinations, make sure our testing is scheduled on time, or just take better care of ourselves in general.  But we also need the empathetic and hopeful support of the positive voices/thoughts.

So, try this tactic: When you hear the voices, pay attention to both, but only for any benefit that you might recognize.  Notice the voice in your head, acknowledge it, don’t judge it right away, “is it useful right now?  If it is negative, but there is a way that it can help to motivate you, i.e. get on the phone and schedule your next follow-up appointment, listen to it, act on it, breathe, and let it go.  If it is positive, but your gut tells you that you are in denial regarding some symptom, listen carefully and act in whatever way is necessary.  If it is positive and comforting, give thanks and move on with your day.  Try not to get stuck in the negative if it serves no useful purpose.  It will only drag you down and drain you of your much needed life-giving positive energy.  Blessings and Namaste<3