Summer Blogging Challenge 2019

It’s once again time for Nancy Stordahl’s, at Nancy’s Point Summer Blogging Challenge. To add to the fun, this year it’s also a Blog Hop. Nancy has provided us with a fourteen question format. So here goes!

1) Who are you? If applicable, share anything you want about your cancer(type, stage, when diagnosed, whatever.) Share shomething about yourself such as where you live, the name of your blog and it’s mission, a challenge you have faced or are facing now, or whatever you want.

My name is Karen. I live upstate New York for 9 months of the year and Delray Beach, Florida for three months. I am a retired medical and clincial social worker. I am married, have two children and six grandchildren.
I am currently fifteen years post diagnosis of Stage IIB, Her2+, lymph node negative, Invasive Ductal Carcinoma of the right breast. I underwent a partial mastectomy, chemo, and radiation, and had Latissmus Dorsi Flap reconstructive surgery in 2006.
Because of my professional background (and the symptoms that I myself was experiencing) I started to blog in 2013 to inform other surviviors (I know, I’m not that fond of the term either, but hard to come up with a different term), regarding the connection between a life threatening illness and Post Traumatic Stress Disorder and the grieving process. The name of my blog is Coping With Breast Cancer: Knowledge and Empowerment

2) Have you ever participated in a blog hop before?

No, I have not had the pleasure of participating in a blog hop. I’m looking forward to it!

3) What’s your favorite sort of blog post to write and/or read–personal story, informational, how to, controversial, political, opinion, rant or other?

I like to read personal informational blogs. Occasionaly, I enjoy reading a good rant blog!

4) Describe yourself in 3 words. Yes, just three!

Stubborn, compassionate, spiritual.

5) Name three of your favorite books from your youth (whatever age that means to you) that had an impact on you.

Wow! I am an avid reader, so this is hard. When I was very young, I loved Nancy Drew mysteries. In my late adolescence, I enjoyed Wuthering Heights by Emily Bronte, and Penmarric by Susan Howatch. 

6) What are you reading right now, or what’s on your to-read list for when you have time?

I just started a novel, Ireland, by John Delaney. I researched my geneology on Ancestor.com and found my Irish ancestry to be fascinating. I am also equal parts English, Scottish, Welsh, and German. I also have my Summer “beach reading” favorites of this year: Montauk by Nicole Harrison, Then She Was Gone by Lisa Jewell, Before and After and Blueprints by Barbara Delinsky, and Summer of 69′ by Elin Hilderbrand. I enjoyed them all.

7) What’s your favorite desert of all time?

My mother’s German Chocolate Cake which I have not had since she died (from BC) in 1984, and which I have never been able to repliciate.

8) Tell us about a special pet you have, had, or would like to have. (Never wanted a pet, that’s okay too.)

My most beloved pet was a female Chihauhau, name Nipper. She lived for 17 years and was three pounds of unconditional love and caring.

9) What’s something people don’t know about you and might be surprised to learn?

I’m an introvert at heart. I prefer small familiar gatherings, rather than large impersonal gatherings. When I traveled for conferences that enhanced my work, I hated being thrown into a “sea” of unknown people. The benefits from these conferences far outweighed my discomfort, so I persevered.

10) Do you believe healthcare is a privilege or a right?

A RIGHT!!!

11) What’s your favorite thing about blogging and/or reading blogs?

Sharing information and gaining information among fellow survivors (there’s that word again!).  There is a special understanding, but also many different personalities and opinions that blend to make a cohesive group.  Having breast cancer, living with breast cancer, or fearing a recurrence of breast cancer can be a lonely experience without a sense of kinship with others.

12)  What’s something you really suck at?

Small talk, mingling among strangers…see #9 above:)

13)  What’s something you’re pretty good at?

Serious talk, counseling and supporting friends, entertaining.

14)  How do you escape from cancer (or life in general) worries?

This is a complicated question.  In the beginning, nothing really provided a total escape.  Time helps to be sure, but we all know recurrence is possible at any point in time.  But, being with family, being out in nature, reading, and prayer all help me to escape from worry.  And, ironically, reading and writing blogs regarding the cancer experience actually is a type of escape by sharing cancer worries.

“Re”-reconstruction

Last year my oncologist suggested an MRI to check the integrity of my implants due to the length of time since placement; they were eleven years old. My original reconstruction had been done in 2006. I hadn’t kept up with my plastic surgeon because she had been in a car accident, which unfortunately, rendered her unable to perform surgery. She had retired, and I just didn’t give a thought to checking on my implants until my oncologist brought it up.  I had no symptoms: change in breast shape, hardness or breast pain which all can be associated with a rupture.
I had an MRI in August and was informed that I had an intracapsular rupture on the right side. Intracapsular means that it is still contained within the outer “capsule” of the implant, not yet migrating into the body. The problem was that since I hadn’t followed up with an MRI every three years (didn’t even know that this is recommended), we had no idea how long the rupture had been there.  If silicone gel from the ruptured implant migrates outside the capsule, it is defined as an extracapsular rupture.  Extracapsular silicone deposits can lead to inflammation resulting in hardness, painful nodules, lymph node enlargement and skin breakdown.
Now was decision making time in two ways. I had to decide on a new plastic surgeon (with the help of my oncologist), and I was conflicted regarding replacing or having the plastic surgeon do what he could to give me something acceptable looking (I have my own nipples) with the skin and small amount of breast tissue remaining. Most of the tissue in my breast is from my back, as I had a Latissimus Dorsi Flap reconstruction using back tissue, muscle, and skin. I wasn’t even sure if it was possible to save anything and form very small “natural” mounds for breasts. If I had the implants replaced, I wasn’t sure I wanted to look ahead to possible surgery every 10 years or so, or less, if another rupture or ruptures occurred.
My newly referred plastic surgeon has a fantastic reputation, which is always good, but also meant that I wasn’t going to get a fast appointment. I contacted him at the end of August and was given an appointment the beginning of October. In the interim, I was concerned about my intracapsular rupture becoming an extracapsular rupture which would allow silicone to migrate into my body.
When the appointment time arrived, I discussed my conflicted thoughts. He explained that he could attempt to “form” breasts without using implants, but the surgery would be much more extensive than just replacing the existing implants. Since I didn’t want more extensive surgery (I had enough of that in 2004 and in 2006), I opted for replacement. The implants that I had placed in 2006 were textured silicone.  Textured implants are not used anymore, due to rare cases of non-Hodgkin’s lymphoma being reported in women with textured silicone implants. It is a small enough percentage that replacements are not made for this reason alone. But, when replacement is necessary, they are now using smooth implants.
My plastic surgeon had a cancellation, so I was scheduled for the end of October. It was out-patient surgery done in the hospital. I was scheduled for a 1:00 surgery, but hospital “time” and real time don’t seem to be the same. I didn’t go into surgery until 5:00 P.M, but I was on my way home by 8:00 P.M. The surgery was done under general anesthesia and two small incisions were made in each breast to remove and replace the implants. I was warned that I may have needed the dreaded drains, but it turned out to be unnecessary. It was a two to three week recuperation, not being able to lift anything heavy or exercise (except for walking). The discomfort was minimal. I was given pain pills, but only took four of them, in total, the night and first day after. I have to see the plastic surgeon once a year AND have an MRI in three years.
So, “a word to the wise,” follow up with your plastic surgeon and have an MRI whether or not you have any symptoms. Better safe than sorry.

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.

 

 

 

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…

View original post 362 more words