What is a Cancer Coach and Why Do You Need One?

I found this wonderful explanation of a Breast Cancer Coach that I reprinted from the Dallas News, dated Monday, February 18, 2008:

“The advice made my head spin: Have the lump removed. No, let them take the whole breast. Chemo? Radiation? Everyone seemed to have an opinion.

‘I just shut everyone down around me,’ said Bernie Brann, a newly diagnosed cancer patient from upstate New York.  ‘You’re just so overwhelmed with information.’

Bad advice, or just too much of it, can compound the trauma and damage done by the disease itself, cancer patients often find. Friends and relatives are important for support, but when these untrained people act as cancer coaches, they can sway people to make poor decisions about their care. This includes survivors, whose opinions are highly valued by patients suddenly facing the scary diagnosis. They may know a lot about cancer, but can do harm if they project their own experiences onto someone else, who may have a different form of the disease that needs different treatment. Survivors also may be out of touch with changes in the field, where genetic discoveries are rapidly reshaping notions of who needs chemotherapy and what kind.

What’s the solution?  Many advocacy groups and hospitals are using ‘professional’ coaches – trained … workers who can objectively help new patients navigate the maze of information and options.”

Recovering from cancer, as I have done two times, is so much more than the treatment. It is about your emotional, physical and psychological states of mind. You feel overwhelmed and out of balance.  You want to get back to “normal” and feel that you never will.  Some of the questions you ask yourself are: Why Me; Why Now; How do I tell my children; What if I lose my job; Where do I get financial assistance and the questions are endless.

You know that my partner, Theresa, and I started Pink Ribbon Associates (http://www.pinkribbongift.com/).  After we had the site launched I decided to go back to school to get my Certification as a Professional Coach. I went to IPEC (Institute for Professional Excellence in Coaching) and received the following Certifications:  Certified Professional Coach, Certified Empowerment Coach and Energy Leadership Index-Master Practitioner. And, although I coach many individuals and families, my niche is as a cancer coach because I feel it is such a necessity to have someone travel the cancer journey with the cancer patient/survivor.  My coaching website is:  www.helpyouhealcoaching.com.

STAY TUNED:  Our next Blog will be about Neuropathy after Chemotherapy.

Wow, where to begin.  We had a whole different format for this month until we heard of the passing of Elizabeth Edwards.  Edwards died of cancer Tuesday at her North Carolina home surrounded by her three children, siblings, friends and her estranged husband, John. She was 61.

Elizabeth Edwards and her family had informed the public that she had weeks, if not days, left when they announced on Monday that doctors had told her that further treatment would do no good. Ever the public figure, Edwards thanked supporters on her Facebook page.

“The days of our lives, for all of us, are numbered,” she wrote. “We know that. And yes, there are certainly times when we aren’t able to muster as much strength and patience as we would like. It’s called being human. But I have found that in the simple act of living with hope, and in the daily effort to have a positive impact in the world, the days I do have are made all the more meaningful and precious. And for that I am grateful.”

“She wanted to leave behind a message … that living a life that was filled with hope and really believing in resilience gave meaning to her life,” Jennifer Palmieri, a family friend and national press secretary for John Edwards’ 2004 presidential campaign, said Wednesday on CBS’ “The Early Show.” “She thought that was the challenge of life, to make the most of the days that you had. And she felt very good about that.”

Her final days were in the company of her surviving children and their father.  As we enter this winter season, with Hanukkah and Christmas, among other celebrated holidays, our thoughts are of family and friends.  Theresa and I were very fortunate to have met Elizabeth Edwards a short time ago and she impressed us so much with her strength and values for enduring this disease and keeping her daily life rich with her family and friends.  We should all use her as our personal guide on learning how to enjoy life while dealing with the struggles we are met with.

As many of you know. I had a lisfranc fracture, was operated on 10/5, was in a cast for 6 weeks and am now in a boot for another 6 weeks (until 1/5/11).  While I was recuperating, I re-read her book, Saving Graces and. I must admit, I did feel somewhat of a wimp.  Let’s face it, having a fractured foot cannot in any way compare to having breast cancer (which I already had and survived),  as well as losing a son at the age of 16 and having a husband cheat on you…  It is amazing how quickly we can put things into perspective when we realize that there are people going through so much worse and handling it so much better.  Here is an except from Saving Graces that is something we all should think about when going through our difficult journeys:

– An excerpt from her book “Resilience,” talking about wanting to live to see son Jack graduate from high school and daughter Cate give birth to a grandchild.

“I have been sustained throughout my life by three saving graces – my family, my friends, and a faith in the power of resilience and hope.”

“These graces have carried me through difficult times and they have brought more joy to the good times than I ever could have imagined. The days of our lives, for all of us, are numbered. We know that.”

And, we cannot forget what tragically happened 30 years ago.  “Today we celebrate the 30^th anniversary of John Lennon’s death, who was shot to death by Mark David Chapman outside his New York apartment in December 8^th, 1980.  That day we lost one of the biggest rock stars and artists in history.  A man that influenced millions and continue to do so, Lennon will always be remembered”.   Believe it or not, I also had the pleasure of meeting him back in 1968 at Twickingham Studios where the Beatles were recording Hey Jude and Revolution for the Smothers Brothers TV Show.

As the holidays approach, I am reaching out to all of you to “Work like you don’t need the money.  Love like you’ve never been hurt.  Dance like nobody’s watching.  Sing like nobody’s listening.  LIVE LIKE THIS IS THE LAST DAY OF YOUR LIFE.”.

May your lives be filled with the spirit of the holidays and prayers for the families who have lost their loved ones.

MERRY CHRISTMAS, HAPPY HANUKKAH, HAPPY KWANZAA & A VERY HAPPY AND HEALTHY NEW YEAR!

Susan & Theresa

I think we left off with me going in for foot surgery on October 5 to take care of my lisfranc fracture, which was supposed to be the drive-through kind, in for surgery at 7:00 a.m. and home be 2:00 p.m.  That’s not exactly the way it happened.  I had bronchitis for the two previous weeks and informed the anesthesiologist of this, however, he decided to go ahead anyway.  Needless to say, I was shocked . . .  During the surgery, I apparently aspirated, and when I woke up I was coughing up blood and my oxygen levels were very low.  They kept me at the surgical center until 3:00 p.m. when they called an ambulance and had me transferred to an inner city (Philadelphia) hospital emergency room, where my husband and I sat (actually he sat and I laid) for the next  8 hours waiting for a room to become available.   I had every test available to woman (and probably man and animal) and what did I find out?  That I now had pneumonia!  The whole hospital experience was an utter nightmare and by Friday I was done being there and checked myself out and now I’ve been happily at home for one week and one day.  I spend my days working out of my recliner chair, using my ‘turning caddy’ to go to the restroom and back and I AM HAPPY because I am home.

One more issue to deal with before we start talking about Breast Cancer Month and what that means to those of us . . .

I would love feedback on what I am about to discuss.  My husband and I pay approximately $1400 a month for health insurance, not including dental.   I called our insurance company about getting a hospital bed and was told that it would cost me 50% after my $5000 deductible was met, so I asked what this past fiasco was costing me OOP?  Really? Ready?  $200-Surgical Center; $100 ER; $400/day Hospital Room (or hospital of horror); and those were the only figures that had so far.  What are we going to do about these outrageous medical costs?  Honestly, for the first time in a very long time I can say that we cannot pay.

It is now October 20 and I had my first appointment with the surgeon since the surgery.  The dressing/cast was removed, as well as the staples and I now have a PINK cast which I will have to wear for the next 4 weeks.

Tomorrow I am going to hop (maybe not) into my wheelchair and head to the Atlantic City Sheraton for a breast cancer event where I will be exhibiting and talking to women about breast cancer.  Feel free to read about the event where Hoda Kotb will be the keynote speaker.

Seventh Annual Breast Health Signature Event

	Hoda Kotb is co-anchor of the fourth hour of TODAY and “Dateline NBC” correspondent. She is also a breast cancer survivor.

Join the Spirit of Women (SOW) for the seventh annual breast cancer event. The dinner lecture will feature co-host and breast cancer survivor Hoda Kotb who will give the keynote address and sign copies of her book. The event, which will include free health screenings, retail vendors, door prizes and giveaways, is part of AtlantiCare’s observance of National Breast Cancer Awareness Month.

Doors open at 4:00 pm for browsing and shopping.

The ticket price will increase to $55 beginning Aug 31, 2010. Register early to receive a $5.00 discount.

Registration

Register securely online or call 1-888-569-1000.

I will happily blog about the event on Friday.  Til then . . .

Since it’s breast cancer month and I have all this time on my hands, I have been adding new items to the website on a daily basis.  Check it out:  http://www.pinkribbongift.com/.

As I am flying 30,000 miles above Colorado, on my way to Las Vegas, I can’t help but wonder what I was thinking as I was being wheeled onto the plane. You see, I took a very bad fall in June and seriously hurt my right foot. I was misdiagnosed-not once, but twice. Now three months later, I finally went to a sports orthopedic and was told that I have what’s known as a lisfranc fracture. I am in a boot from my toes to my knee and was told that I should have surgery immediately and I decided to go to Vegas as planned and have the surgery October 5.

I’ve now been in Vegas for 6 days and am going home this afternoon. I am so happy I made this trip! I got to see so many friends, went to a couple of shows, played in a mahjongg tournament and I even rented a scooter for the very first time in my life-that was an absolute riot-and, guess what? Not only did I do this against my doctor’s advice, I SURVIVED!

So what does this have to do with surviving? Live your life one day at a time and do what you want to do when you want to do it.

And. since this is Breast Cancer Month, I am going to share two stories from friends of mine, who are both not only breast cancer survivors, but amazing women!  The first one is Beth Gainer’s story and information on her Blog:

“A recent TV commercial features two musicians playing instruments and
singing “Happy Birthday to You.” Afterward, a message appears on the
screen that many people who have had cancer are still celebrating
their birthdays.

I’m one of them.

Except I have had 365 birthdays per year since I was diagnosed with
breast cancer in 2001.

My perspective has changed since I had cancer and went through
chemotherapy, radiation, and, a few years later, a preventive double
mastectomy with reconstruction. Before cancer, I took life for granted
and didn’t appreciate even the smallest, precious moments.

Since cancer, I view each day as a gift, as another birthday. I now
have an uncanny ability to slow down time and appreciate life. This is
what it means for me to be a survivor and thriver: not merely to exist
day to day, but to see each day as something to be savored because,
truth be told, no one knows when his or her last day on Earth will be.

Oddly enough, I view my having had cancer as a gift, for it has taught
me many life lessons. I have learned to make friends with quality
people and not waste my precious time with those who drain my energy.
I marvel at my daughter and know that my time with her is a precious
gift, not to be taken for granted. I don’t allow obstacles to
interfere with my dreams. I not only stop to smell the roses, but I
savor the scents of each season in a way I never did before. I look up
at the sky, even when it’s raining, and know that life is good. And
when I have bad days like everyone else, I view them as good days in
disguise.

This is what it means for me to be a breast cancer survivor: not just
to survive, but to thrive by relishing life’s wonders.

Those two musicians singing “Happy Birthday to You” in the commercial
lift my spirits. Because as a breast cancer survivor, I know that
today, like every day, it’s my birthday.”

Beth L. Gainer is a professional writer and has published numerous academic and magazine articles, as well as an essay on her breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing.  Her blog-column, “Calling the Shots,” offers advice on how to coach oneself through the medical system and to be a self-advocate when facing doctors and other medical personnel. Her blog is at www.bethlgainer.blogspot.com. Voices of Breast cancer can be purchased at http://www.amazon.com

This next post/video is by my friend, Gina Maisano, who wrote a book entitled Intimacy After Breast Cancer.  She and I became friends while on a discussion board on www.breastcancer.org while going through our treatment.  Gina has done so much to educate not just the breast cancer community, but the general public.  Gina was on Good Morning America today and talks about the issues of intimacy after breast cancer:

abcnews.go.com/Health/video/intimacy-breast-cancer-11796103

I hope you enjoy this Blog as much as I enjoyed having my friends guest blog for all of us.  Have a wonderful week!

As some of you already know, I was diagnosed in November 2005 with Stage 1, Grade 2,  HER2 + 3 (not so good), no lymph node involvement, clear margins and everything seemed A-OK — NOT!!!  Because my FISH test came back questionable, I had to have what is know as OncotypeDx - http://www.breastcancer.org/symptoms/testing/types/oncotype_dx.jsp.  This test determines your percentage of risk for spread and re-occurrence from the date of diagnosis through ten years and I was in the highest percentile (again, not so good).   The outcome of that test determined my treatment, which were: Four dense dose chemotherapy of Cyclophosphamide and Adriamycin, better known as A/C; 12 straight weeks of Taxol (allowed to skip the week of my daughter’s wedding; 6 weeks, 5 days a week, of radiation and last, but certainly not least, one year of Herceptin.  I started my treatment on January 6, 2006 and my daughter got married June 17, 2006.  How many of you watch the Housewives of New York?  If so, do you remember when Romonna and Mario renewed their wedding vows?  Romonna walked into the Pierre Hotel with her wedding planner, Roberta, and if we hadn’t used her as our wedding planner . . .  Oh, and I was in the hospital 1 month before the wedding with celluitis.  Here we were planning a wedding for 225 guests – the wedding ceremony took place on the beach at sundown in Cape May, NJ; the cocktail hour was on the front lawn of the hotel; and we had a sit down dinner.  Picture me with my beautiful gown, my very hot wig, my big toe wrapped in gauze and not feeling very well . . .  It was, however, a beautiful wedding and I wouldn’t have missed it for the world.  Ok, enough about me!

How many of you finished your very last day of treatment and felt as though you had been dropped off the side of a cliff?  No more doctors, oncologists, oncology nurses, nutritionists, social workers, etc.  Let’s face it, you have just lost your “cancer support system”.  You go home and all of a sudden, you say “now what?”, “what am I supposed to do?” “what do I do tomorrow, or for the rest of my life?”  It is a pretty scary feelng.  Everyone around me was celebrating the fact that I was finished with my treatment and all I wanted to do is cry, cry, cry.  I have a wonderful family, as well as friends, and it’s just didn’t make me feel any better.  How many of you have or have had those same thoughts or feelings?  I know I’m not alone.

Let’s talk about surviving breast cancer.  I was very fortunate that my hospital held breast cancer support groups, as well as a luncheon every other week for women (and men) who were newly diagnosed, going through treatment, as well as surviving.  It was run by a social worker and every luncheon had a different topic, such as how to keep a journal.  It was not only emotionally stimulating – it was supportive being with other men and women who knew exactly how I felt.

Lately, I have had many women from different parts of the country tell me that there are no support groups in their area, so I did some research and found this site which I liked a lot - http://www.bcsupport.org/.  I also suggested to these women that they consider starting their own support group by putting an ad in the local newspaper, contacting local oncology groups, hospitals and radiology offices.  Let them know that you are a breast cancer survivor and you want to start a support group since there are none in your area.  Trust me — everyone knows someone who is going through or has been through the breast cancer journey.  There is a need for women to be assertive and if the local community isn’t doing something for cancer survivors, then we have to do it ourselves!  “Support” and “Survival” are the key words here.

I would like to hear from you, my readers, about your experiences dealing with surviving breast cancer.  If you would like to e-mail me  privately, my address is susan@pinkribbongift.com.

For someone going through chemotherapy, who suffers from nausea and discomfort, the lavender scent helps with nausea.  The warmth from lavender soothes the body and spirit and can be seen as a form of complementary medicine, as shown in an article on Scott Hamilton’s, cancer survivor, website, ChemoCare.com.

Having something cuddly, microwaveable, with a lavender scent could be just what the doctor ordered.   Whenever you need a little pampering cuddle up to Lee Roy, the Lavender Pig, He is so soft, you can microwave it for  a minute for a warm, fragrant hug. A removable insert is filled with fragrant lavender to soothe, and flaxseed to hold the heat. A great gift for the young and old.

Lavender as well as other comforting scents come in all types of animals, such as “LU LU the lavender poodle, “LOVEY” the lavender lamb, “LAVENDER LOU” teddy bear in lilac, “FREDDY”the eucalyptus frog, and “COCO the chocolate teddy bear”.  For more information on aromatherapy, visit our website at www.pinkribbongift.com.

When people are newly diagnosed and/or going through treatment, they feel scared and alone – as though she is the only one going through this.  Giving a gift that makes someone remember that they are cared about, supported and loved and can make her journey a little more tolerable.

Consider a “Get Well Bear” – its lips move and it says seven (7) different Get Well Messages.

As mentioned in a featured article about Pink Ribbon Associates, in the online publication Networking Events New York, gifts are given to show appreciation and express love to those in need.  Pink Ribbon Associates, in 2008, saw an opportunity and a reason to create a destination for those in search for the perfect gift.

A couple of weeks ago I went with some friends to see the play, RESPECT, in Philadelphia. As I opened the cover page of the playbill, there was a message “FROM A MEMBER OF THE CAST…to the women in the audience, and the men who love them”, written by one of the cast members, CHERYL WILLIAMS, which read:
“Bud, our director, asked me to share this, so here goes.
I am a breast cancer survivor. Stage 2 and almost four years clean.
Okay…so here I am. With you…at this moment in time. Just saying to you (like you don’t already know)…life is precious…live each and every moment, and be proud of all you have achieved. Relish every experience…every opportunity that comes your way. Hey, it’s not all perfect…no one promised us fairness, goodness, understanding, a babysitter, a great president, good health, great teeth. I’m working two jobs, losing my hearing (otherwise known as getting older), trying to stay healthy and strong, dealing with my beloved students, my husband, my new home, my puppy Jenny, deaths of loved ones, family troubles…life. Just like everyone else. But I will survive, because being a survivor means putting one foot in front of the other each and every day.
And so, with you, at this moment in time, I say…keep on walking. Don’t forget our history, our past, and the wonderful women who paid the price and paved the way for us. This show pays homage to all courageous women…and that means YOU, living life moment to moment, doing the best you can, sharing your magnificence with family, friends and strangers. I celebrate you and thank you for being a part of our journey here.”
This really touched me and I wanted to share it with you.
Although I feel strongly about not sharing the “bad stuff”, sometimes it helps in ways we’re not sure why. Perhaps someone has a suggestion or read an article or knows someone who went through the same experience and got some help. I am having a scary side effect from the chemotherapy: I have nuropathy which started in my left foot. It is numbing and painful at the same time and i have tried tried traditional and homeopathic treatments–to no avail. It is now literally crawling up my leg to my knee. I am on pain medications (which I dislike, but which allows me to function), as well as some other drugs. I am curious as to whether any of you have gone through this and gotten good results?
There is a wonderful website with a lot of information who has done so much for breast cancer patients, survivors and their caretakers.  The site is LBBC.Org