Category: breast cancer

What Does a Cancer Diagnosis Feel Like?

Post author By sarambarton
Post date June 20, 2014

I have a very special post to share with cancer patients and their loved ones. The raw emotions and roller coaster ride of a newly diagnosed cancer patient is rarely demonstrated as well as it is here.

I opened an email from a hospice friend not long ago, someone I hadn’t corresponded with in a while, and got the shock of my life. But it was nothing compared to what she was going through.

Long after I read her letter, her words stayed with me. I couldn’t shake them. My first thought was to contact her and tell her how much she is in my thoughts, my prayers. But my second? I wanted to give her a chance to share her story, not only to give her a voice as a cancer patient, but also because I believe other people out there will benefit from her experience.

Before you read on, let me tell you that I have already heard further from her. Melody Webster’s sense of humor and determination to rise above are still strong. I asked her if she would consider checking back in, during treatment and after. She is very interested in doing that, so expect to hear from her again on my blog. And now, here is what she wrote:

I Have to Get This Off My Chest — Letter from Melody Webster

I found it necessary to write this so that years from now I could recall how I felt when I was faced with hearing I could have a very serious illness. I have worked in Hospice for some time now and meet many families that are faced with the reality of having a life threatening disease. Always thinking I knew how they were feeling and what they were going through couldnʼt have been any further from the truth. I am lucky, I only had to prepare to hear the worst, these families are living the reality of knowing their final outcome.

My heart goes out to all of them……..

We see our bodies every day. We notice every new line and wrinkle on our faces as we brush our teeth and put our makeup on. We see more and more grey hair as some of us try to hide them with color. We see the little new dimple of fat that may appears on our thighs. We touch the little pouch of stomach that may have appeared on our tummies. Some of us pull the falling face up towards our ears and think wow I could looks 10 years younger by having a little tuck behind my ears. We brush our teeth with whitening hoping to have the great smile we did when we went to the prom. We wear push up bras or athletic bras hoping to get a little perkiness in our girls.

Have you looked at your boobies lately? Do they look the same as they always did? My boobies started to look different over a year or so ago. Both my nipples were smashed in when I took my supportive bras off at the end of the day. I encouraged them to come out by pulling and twisting them. My thought was they were just a little tired of the effort to look young and smug. I thought that like everything else on my body they were loosing their elasticity and just wanted to take a break. No more having to put my arms in front of my chest when picking up a pizza in the frozen food section. Those little nipples kept themselves warm and snug by taking shelter in the comfort of my now bouncy, drooping boobs. I succumbed to the fact that my body wasn’t what it used to be and some things cannot be changed without a huge bankroll given to a plastic surgeon. I decided then that I loved my husband; he loved me no matter what I look like as long as I always applied a little lipstick before we went to the store together.

I paid attention to my yearly blood work that always came back good, not perfect but “great for a woman of my age”. I kept up with my yearly mammograms. Asked the tech if she had seen many women with a shy nipple and she assured me she has seen many. Believed it was again just a normal sign of AGING. I forgot to mention that my nipples were like tortoises. One always finally came out of its shell the other one remained hiding inside refusing to come out even when coaxed by manipulations Iʼm not going to mention.. The refusal of this stubborn nipple caused me a lot of anguish. I thought I had more control over my body parts, maybe not my bladder but other parts.

I spent many hours on the Internet searching for shy nipple syndrome. Everything that came up was very frightening….REALLY! Everything from Inflammatory Breast Disease, all sorts of other breast cancers, the list went on and on. Nipples that had never shown their smiley faces were ok but ones that started hiding later in life were a REAL warning sign that something isn’t right. I became obsessed with this nipple. I asked practically everyone I didn’t know if they had one. I was too embarrassed to ask people I know about my shy nipple for fear they would think I’m crazy.

Finally it got to the point that after every search on the internet I would clear my browsing history…. didnʼt want anyone to know that I was obsessed by this, especially since everyone was telling me that this was perfectly normal.

One day I told myself there is more to life than worrying about a shy nipple…..take action and resolve it now! Get the answers to all the questions so you can return to a normal life. I even considered having this nipple decorated with some sort of nipple ring to keep it out in the open.

I finally decided to take the bull by the horns or in this case take the nipple by the very small tip showing and demand someone explore fully why this baby wouldn’t stay out. I made an appointment with my primary care doctor. She looked at all my past mammograms and confirmed that they were all negative. Upon her doing a breast exam she notice that the breast with the shy nipple felt really dense and it was hard for her to determine if there were any significant lumps or abnormalities. She said since I had been worrying about this nipple thing it may be appropriate to have an MRI. Great I’m making progress even at the embarrassment of shy nipple. MRI scheduled….in a couple of days I would have some answers. Yeah!

Got a call from my doctor a few days after the MRI telling me they saw a couple of masses in my shy nipple breast along with an enlarged lymph node. Recommendation was to have a biopsy. Wow — reality hitting me.

Was I right all along that something very serious was going on and that my shy nipple was trying to catch the attention of everyone and no one way listening to the cry of help from this little precious piece of skin? Concerned about what this all meant I asked my doctor what the heck does this suggest. Her response was expect to hear the “C” word. Yikes is this really what I wanted to find out? Maybe I should go hide with my shy nipple. She went on to tell me that it was probably stage 3 cancer and that surgery, radiation and chemo were to be expected. “NO! ARE YOU KIDDING ME?” I thought. I asked her what about my shy nipple?

She said the nipple wasn’t involved as shown by the MRI.

She would set up the appointment with a breast surgeon so that it would save time. It would be right after the biopsies. I was really worried that maybe I had waited too long. Was I beyond early stage curable cancer? Had it spread to other areas? Was I so keyed into my vanity? Had I pulled the face skin back to my ears too many times to look ten years younger when I should have paid more attention to my shy nipple waving her arms as if saying throw me a life jacket I need help and I need it now! So many thoughts and not enough hours in the day to filter all the information.

I lost a couple of lbs over the past month or two in hopes of wearing a new bathing suite to the pool with my grandchildren this summer. OMG maybe I need those lbs. now because of all the surgery and treatment I’m going to have. My head is swirling. Iʼm too young for this. I need to take an Ativan to make it through the day and wine and Ativan to sleep only a few hours at night.

How will I make it over the next few days before the biopsy? My head is swimming with negativism. Everyone says to be positive for a good outcome. Positive…. Iʼm ready to pay the funeral director now in fear that I will spend our entire retirement fund at the casino to blot all this out. God please help me make it to the biopsy without having a heart attract or stroke………..

As many women before me have done I made it to the biopsy with fear in my heart and a sick feeling in my stomach. Its funny what fear can do to the body. All “systems go” if you know what I mean. When I woke up on the morning of the biopsy I felt pretty good. The couple glasses of wine and the melatonin before bed brought the rest I yearned for before my big day. I was fine till I walked through the door of the building that would inflict long needles in my breast. I squirmed just plucking one little hair I had noticed growing from my nipple in the past. Now several needles would be inserted deep and they told me I could even watch the whole procedure on the screen. Wow are you kidding me. I still remember the scene from Psycho in the shower. I never thought I would want to look at sharp objects going into a body again especially mine.

Well as it turns out there was very little discomfort from the needle that deadens the feeling in the breast but I thought since menopause I havenʼt had much feeling in that area anyway. Everyone at the cancer center was great. They must pay them a lot of money to create such a calm and peaceful setting. It was like a dream where you didnʼt want to wake up because everything and everybody was treating you so kind and so nurturing. I realized how selfish I was to think that I was the only one ever experiencing this. Itʼs not all about me I thought I am one of millions of women who have gone through this.

P.S. Infused some humor because that is how I handle life stresses.

Going home I felt numb not just in my boob but my whole body was in a state of shock. Things like this only happen to others. Then my mind starts thinking about all the families Iʼve met through hospice and I have just about given up hope for cure before the results even came back. At this point Iʼm just tired of ME. I think I went through all the stages of grief in the period of 2 weeks. I had to wait from Thursday till the next Tuesday to find out the results. Was it a piece of cake….not really it was several pieces of cake and a keg. My darling husband must have sent out an SOS to our relatives because my daughter-in-law and oldest granddaughter drove from Calif. to Sahuarita to spend Easter with us. Leaving the 3 other grandchildren and husband home alone on Easter. Wow did I feel the guilt. I was on my best behavior keeping all of my feelings to myself. Only by then there were hardly any feelings left.

I feel the guilt. I was on my best behavior keeping all of my feelings to myself. Only by then there were hardly any feelings left.

Then came the day of reckoning … like the jury had reached a decision and I was awaiting my sentence. I was totally amazed at how hearing that I did have a cancerous mass but it was slow growing and I would receive hormone treatment to shrink it before hopefully only a lumpectomy could raise my spirits.

All the prayers that friends said for me had been answered. I was afraid that God no longer listened to my prayers since I have used all of mine up at the casino praying for a royal flush.

Smack me in the face — I have had to come face to face with my mortality and it was a scary thing to do. I send my most deepest respect and admiration to those who have had to go through what I have experienced and did a much more honorable job of doing it than I did.

God bless all you women who have fought the cancer battle. I canʼt say Iʼve walked in your shoes — maybe just in your flip flops.

Love to all for your support.

That’s it for Melody’s letter. She’s begun treatment and is on her way as a cancer survivor. I’m looking forward to hearing about her progress, and when she shares her thoughts on the road to recovery, I will post them here. And again, Melody, thank you for having the courage and gumption to speak up, to speak out, and to share your experience. We’re grateful.

breast cancer cancer research pancreatic cancer social media

No Such Thing as a Good Kind of Cancer

Post author By sarambarton
Post date February 7, 2014

Recently, there was great controversy stirred up by a UK pancreatic cancer charity, which launched a promotional campaign in which people spoke of wishing they had a different kind of cancer, because their outcome would be better. I was dismayed. Not only is this a misguided effort, it’s downright dangerous. It leaves viewers with the idea that there is some “good cancer” out there, and that if one gets it, “no problem”.

Such an unfortunate campaign sadly misinforms the public about the real face of cancer. In all my years, I’ve never known anyone to get a “good kind of cancer”. Cancer is cancer — a generic name for thousands of different kinds of biological reactions in the body that often attack organs and blood, creating tumors, autoimmune issues, and other maddening, life-changing, life-challenging issues.

In all my decades of life, I’ve seen so many things happen. People who had good prognoses died and people who had bad prognoses lived. You can’t always predict how cancer will affect the body, and the idea that having a “good cancer” means you will survive is just wrong.

Don’t believe me? Answer this question. Which vehicle would you prefer to be struck down in the street by at ninety miles an hour:

A. a 7-ton double-decker bus
B. a 2-ton Mercedes Benz
C. a half-ton Fiat 500

Did you say the tiny, “cute” little Fiat? Did you perceive that because of its public aura, its marketing campaign, its ability to navigate through tight spots that you would be safer being struck by one? At ninety miles an hour, does it really matter what type of vehicle strikes you? I think not. Impact on the body is a critical factor in a traffic accident. The same is true of cancer’s impact on the body. How much cancer is there? That’s what helps to determine outcome. If doctors have to treat a body riddled with cancer, the chances of survival are about equal to being hit by any type of motor vehicle at ninety miles an hour.

Here’s another question:

If you fell overboard without a life jacket, where would you have the best chance of surviving:

A. In the middle of the Atlantic Ocean
B. In the middle of Lake Superior
C. In the middle of the Amazon River

Three different bodies of water. Three different types of challenges and risks. You might think that the ocean is the most dangerous. After all, if there are sharks and other predators in the water, and the waves are rough, your survivability rate will be sharply curtailed. We know that the Amazon has piranhas, those nasty little fish that work themselves into a feeding frenzy, not to mention black caimans, those alligator relatives, and any number of other critters, so that’s probably not a great option. If you said Lake Superior, did you consider things like the shipping traffic? Or the ongoing risk of hypothermia? Or the dangerous rip currents?

Whether you’re about to be struck by a vehicle going ninety miles an hour or you’re dropped into the middle of a huge body of treacherous water, the end result is the same. It probably won’t end well.

The same is true for any advanced cancer. In this past two weeks, I have read the posts by friends who lamented the passing of this person and that person. They were all individuals with different kinds of cancer and they died.

I have also read wonderful things by people who survived their battles. Everywhere I go, in public, online, people share their stories with me. Never have I found that one kind of cancer is better than another when it comes to survivability. What matters is the stage, the treatment options, and the cancer patient’s ability to sustain the effort. There are so many variables, so many ways things can go, no one is ever promised complete cure or extended life, except perhaps in Stage One, where it’s easy to be optimistic.

Understanding the broad spectrum of diseases with the generic title of “cancer” is more complicated than most people appreciate. While the pancreatic cancer organization in the UK erred by their promotional campaign’s suggestion that there are better kinds of cancers to have, I’ve seen people make the opposite mistake. I once had a conversation with a cancer caregiver who actually thought her husband’s taking a pill once every couple of months was the same experience as my mother’s being at the cancer center five days a week for months of treatment. It wasn’t the difference between prostate cancer and lung cancer that was the problem. My mother was dying of the disease. She had no treatment options, other than to keep her comfortable. To have her cancer dismissed as the equivalent of an active man with managed prostate cancer fully engaged in life was hurtful. Four years after my mother’s death, the same man is still going strong, still enjoying life. Do I begrudge him that time? Absolutely not. I’m glad he made it. I wish everyone did.

But I also wish his cancer caregiver understood the difference between a well-managed cancer and one that is out of control — not through a failure by patient, caregiver or doctor, but because cancer is what it is. When it overtakes the body, options are fewer and the toll is much greater. We need to support cancer families in crisis with real action. We need to be there for them through thick and thin. These are the cancer patients who have the greatest hardships. These are the cancer caregivers who need a hand in providing care.

I wish everyone survived their bouts with cancer. That’s really the bottom line. Many more do now than did forty years ago. Some people manage their cancers for a while, thanks to new treatments and better diagnoses. But there are still some people whose cancers are so aggressive, it’s impossible for oncologists to do much other than try this or that. Cancer is still a mystery to figure out.

While it’s tempting to attack with an “Occupy Cancer!” attitude, as if we can sit in and force cancer researchers to cure this type of cancer or that type, the fact is the developments in disease treatment are often made in unusual ways. Just recently, there was an announcement that doctors think a new acid bath for cancer cells might be an amazing weapon in the fight against cancer. Acid bath? It sounds so much better than a cancer drug that knocks patients on their fannies and sometimes even coldcocks them. In reality, it’s not always the cancer that kills the patient. It’s the rigors of the treatments, with the dangerous side effects. Many chemotherapy patients find their organs permanently damaged by the very treatments that keep them alive.

Getting hit by a Fiat going five miles an hour is probably a survivable event — the impact on the body helps to determine the extent of the injuries. Getting hit by one going ninety miles an hour is probably not. Perspective is important when assessing cancer survivability, and the better able we are to see what is in front of us means we will act in good faith and to the best of our ability when meeting the cancer challenge.

Let’s stop assuming that the happy face social media slaps on cancer is the real story. Let’s stop thinking of the disease in terms of “good cancer” and “bad cancer”. Let’s stop thinking that some people are “lucky to have the good kind of cancer” and others are “unlucky”. We need to join together in supporting every cancer patient, every cancer family, without the rancor or bitterness. Cancer is cancer. It doesn’t care who you are or what you do or how much money you have in the bank. It doesn’t care if you’re a worthwhile person or the vilest of the vile. Cancer can’t be dreamed up or wished away. It’s a challenge that can only be met with a positive attitude, a realistic perspective, and a gritty determination to learn as much as we can to insure quality of life, not just quantity. Cancer is what it is, but life with cancer is what you make it. Choose wisely.

For more help as a cancer caregiver, visit The Practical Caregiver Guides

breast cancer cancer treatment Marie Curie Cancer Center Light Up a Life pain management palliative care the elderly UK

How Could She Die of Cancer Without Anyone Knowing?

Post author By sarambarton
Post date December 10, 2013

I lost someone precious. She was more than a relative. She was more than a friend. She was close to my heart. We shared laughter and tears as our lives traversed the years, she on that side of the Atlantic, and me on this side. And she died without anyone knowing she had cancer.

You would have loved her if you had the pleasure of meeting her. She had a great sense of humor and a wonderful laugh. She was a compassionate person and had a long career as a nurse. I can still remember when I showed up on her doorstep all those years ago — a young college graduate, with tennis racquet and duffle bag in hand. She greeted me with open arms at her front door, introducing me to joys of afternoon tea. Tea bag? Never. Coffee bag? Of course.

I went off to the local tennis courts to practice my serve or wandered around her village when she went to work. She wore her uniform to the hospital, looking very smart, right down to her starched cap and nurse shoes. She loved her job.

She had the quintessential cottage garden, a charming spot on a hot summer’s day. For her, gardening was a labor of love. Double petunias and begonias, she recently told me, were what should go in flower boxes. I couldn’t find double petunias for my garden, but I did think of her every time I looked at my abundant Wave petunias. I managed to plant some white begonias. They, too, thrived this summer, keeping alive our connection.

She was there to help me stay the course when my mother was in the final throws of cancer. She sent me little packages she knew would appeal to the caregiver in me. Those tiny gestures of comfort were like hugs across the ocean: a daffodil pin from the Marie Curie Cancer Center, a star pin from the Light Up a Life hospice organization, cheery offerings to let me know I was not alone. My favorite gift of all was a tiny package wrapped in turquoise paper and a red ribbon. It came with this beautiful sentiment:

“This is a very special gift
That you can never see
The reason it’s so special is
It’s just for you from me.

Whenever you are lonely
Or even feeling blue
You only have to hold this gift
And know I think of you

You never can unwrap it
Please leave the ribbon tied
Just hold this closely to your heart
It’s filled with Love inside”

Even as I recovered my bearings and moved from caregiver back to career, she was there for me every step of the way, encouraging me to keep at it. That defined her as a person. She was a lovely human being.

For the last year and a half or so, she had been sharing her health woes with me, telling me that she was fatigued, she just didn’t feel right. Her pain was getting worse in the last six months. It was clear from her notes that she was dismayed. She went back and forth for doctor appointments. Was it her heart? Was it something else? No one seemed to know. Maybe it was just old age. Except her symptoms never seemed to fit that diagnosis either. The pain just got worse and worse, and as it did, so did her misery. She did not deserve it, not after all the years she spent caring for others.

Sadly, it was only after she died that her cancer was diagnosed. All those months — nay, the last few years, were spent in needless suffering, even as the cancer invaded her body and spread, moving from organ to organ. No wonder she felt so terrible.

Whenever doctors wave away a patient’s complaints, whenever we caregivers accept the status quo for our loved ones, we truly miss the boat. Palliative care is about helping loved ones live as well and as comfortably as possible, but doctors need to know what they are treating. She should have never fallen through the National Health Service cracks like that, especially not with her experience as a nurse, and especially not with all her support of cancer and hospice organizations. She deserved much, much better than that. Someone should have listened, should have tested, should have made the effort. This was not just some little old lady with a touch of arthritis. This was a woman with undiagnosed cancer. It’s a travesty.

I know that there is one thing she would want me to urge you to do, something I wish I could have done for her. If your loved one has symptoms, but no diagnosis, ask this simple question: Could it be cancer?

Cancer is a sneaky disease. It can hide in organs. It can mimic other diseases. If your loved one doesn’t feel right and that sense grows over time, demand to know — Could it be cancer?

Many times, the symptoms don’t show up until it’s too late for cure, but that doesn’t mean it’s too late for comfort. Every person deserves comfort care and pain management. It never occurred to me that cancer was her problem. I thought it was her heart. I expected her to tell me she needed a stent or new medication. Anything but cancer. But I know now I should have asked. Could it be cancer?

For that reason, and because you care, make sure to ask when your loved one doesn’t get better. Could it be cancer?

And if it is, don’t stop there. Ask what can be done, not just to cure, but to comfort. Tuck this reminder away in your mental caregiver file. Don’t stand on the sidelines and hope for the best. Don’t wait for a doctor to suddenly become telepathic. If your loved one is not feeling better, act. How I wish I could have done more. Please remember her, remember her story, and do for your loved one what I could not. Press for answers. Could it be cancer?

breast cancer breast reconstruction Diane Mapes University of Washington Medicine Plastic and Reconstructive Surgery Clinic

Diane Mapes and Her Amazing Reconstruction Journey After Cancer

Post author By sarambarton
Post date July 30, 2013

Black, brown, yellow, orange, red, violet, blue, green….If you ever were a kid and colored with Crayola crayons, you’re probably familiar with the Crayola eight-pack of standard colors. Those are the ones teachers hand out in school — the basic drawing choice for chunky little hands that are still learning that there are lines in which we are supposed to color, and the penalty for drawing outside those lines is…well, is it a penalty to grab life, shake it by the horns, and live by pure, unadulterated passion? Diane Mapes is like a box of 64 vivid crayons (sharpener included), with expressive names that conjure up instant images in your mind….Electric Lime, Hot Magenta, Jazzberry Jam, Outrageous Orange, Purple Pizzazz, Razzle Dazzle Rose, Screamin’ Green….

As an experienced journalist, dating humorist ( Single Shot Seattle ), and lover of living life out loud, Diane is not your typical wallflower, content to sit on the sidelines and watch the party. She jumps in with both feet and lands where she lands. She rolls with the punches, and trust me when I say that, as a boxer, she can give as good as she gets. Feisty, funny, fiery…this is not a woman who will ever go gentle into that good night. You’ll see her kicking and screaming the whole way. I was lucky enough to meet her earlier this year, and believe me when I say she’s a memorable personality.

That’s why, when Diane got sucker-punched by breast cancer back in 2011, she came out slugging. Her determination to dominate the disease is no fluke. It’s what makes Diane who she is. And that’s why I want to share her blog with you.

So many women are grateful to survive breast cancer, and for many, just being alive is enough. For those of us who love them, we learn to appreciate every day as a gift, because we know that tomorrow may never come, that sometimes you can be so overwhelmed by lemons that you are drowning in lemonade.

Diane Mapes is someone who is glad she’s still with us, but that doesn’t stop her from wanting more. And by more, I mean she wants her “girls” back. For that reason, she is paving the way for all the breast cancer survivors who have ever thought, “If they can put a man on the moon, why can’t they give the ‘girls’ their due?”

I understand that climb-out-of-the-box mentality. Discontent with the status quo, the passionate writer demands more, hungers for more…needs more. And because she does and she’s willing to make the effort to grab it, many women are likely to benefit from her refusal to raise the white flag as a breast cancer survivor.

There’s a new reconstruction process for breast cancer survivors that is currently being done at the University of Washington Medicine Plastic and Reconstructive Surgery Clinic, and Diane Mapes is a patient there. I can’t begin to describe the process and do it justice. To be honest, it sounds more like a wack-a-doodle gizmo thing you see on a 3 AM infomercial, right next to Suzanne Somers’ Thigh Master. Or that contraption my mother claimed expanded her chest with every repetition (“We must, we must, we must build up the bust….”) The important thing to note is that this is actually a process that is legitimately being pursued by a reputable medical establishment, and if it is successful, women will have an option that doesn’t involve removing other body parts to reconstruct new breasts. Fewer scars, fewer complications, and a far more “user-friendly” way to make women feel more like their old selves.

Some people might think it’s over the top. After all, lots of women choose more traditional routes in reconstruction. Or they decide that they should just leave well enough alone. But for every breast cancer survivor who has ever looked at the scars, remembered what she’s lost, and is willing to admit that she still misses her “girls”, Diane’s in the ring, duking it out because she really believes that this whole complicated process is worth it.

Visit Diane’s blog. Follow her progress and find out whether it’s worth all the hard work:

Double Whammied

I’m rooting for her. I’m in her corner, cheering her on. I want this to be a huge success. Not just because Diane is a hoot, which she is, but because there are so many women whose lives have drastically changed after breast cancer. I believe in quality of life. I believe that a woman has to feel good to look good. Our real beauty is actually on the inside, and when we express ourselves, that joie de vivre, that passion, pours out of us in bubbly, effervescent ways that inspire and invigorate others. But if we face the constant, painful reminder that cancer has taken…and taken…and taken from us, it’s hard to feel good inside. Good reconstructive plastic surgery is a valuable tool for the wounded psyche, to restore more than just superficial beauty. It allows us to feel less segregated, less isolated, less marginalized by disease. This isn’t just a boob job. This is the rebuilding of a woman who wants to take back what cancer stole from her — the image of herself as a woman. You go, girl!

Alicia Staley Angelina Jolie breast cancer breast reconstruction Cancer Treatment Centers of America Dr. Deanna J. Attai Jody Schoger

Dr. Deanna Attai Explains Preventive Breast Reconstruction

Post author By sarambarton
Post date May 21, 2013

If you didn’t read the New York Times article today on Angelina Jolie’s decision to have a preemptive double mastectomy because she has a history of cancer in her family and high risk of developing the disease, please do:

No Easy Choices on Breast Reconstruction

Written by Roni Caryn Rabin, it’s chockful of good information, thoughtful consideration of the issues involved in making the decision, and lots of wisdom offered by Dr. Deanna Attai.

I’ve never met Dr. Attai, but I was lucky enough to meet some of her friends a few months ago at the Cancer Treatment Centers of America Bloggers’ Summit out in Arizona. Alicia Staley and Jody Schoger are two-thirds of the brains behind the Monday night BCSM online chat. Dr. Attai is the other third.

For women facing breast cancer, BCSM (Breast Cancer Social Media) is a support group like no other. Imagine having other women who have been there and done that show you how to wear the tee shirt. You can follow the Twitter conversation, moderated by Alicia, Jody, and Dr. Deanna, at #BCSM Chat Monday nights at 9 PM.

You can also click on the group’s website link, www.bcsmcommunity.org.

Why am I telling you this? I don’t want you to just stop at the end of the New York Times article. If you’re facing this important decision, I want you to make the best, the smartest, the most informed decision you can about your future. Most of all, I want you to have resources and support, and that’s what the BCSM community offers. Don’t go it alone. Don’t just assume you have to do this or you have to do that. Every woman is different. Every cancer is different. It’s never one-size-fits-all.

One of the best pieces of advice Jody gave my readers in her interview with me was this:

“The first thing is how essential it is to learn about cancer, what the recommended course of treatment is and the range of side effects that might be anticipated. There are many different forms of breast cancer. Most don’t realize how complicated breast cancer is and that treatment may involve only surgery, or surgery plus chemotherapy, radiation and/or hormone therapy in various combinations. It’s a lot to take in at one time. But you don’t want to look back either, and realize that you could have made a better decision about treatment. You have time to think, learn, and talk with other survivors. There’s only a small subset of breast cancers immediate action is necessary.”

“Jody Schoger Wants to Make a Difference….” Interview

Dr. Attai has guided so many women through the maze that is breast cancer. You can find her on YouTube, offering helpful information on video:
http://www.youtube.com/user/dattaimd?feature=watch

You can also find her website: http://www.drattai.com/

Facebook? She’s there, too, as Dr.DeannaAttai. At Twitter, she tweets as @DrAttai.

If you’re dealing with breast cancer and its related issues, be good to yourself. Join with others who have sailed those waters. Share your experiences, the lessons you learned, the wisdom you gained. For every time you felt that dark shadow cross your heart and felt that panic, know you are not alone. There are others who know that pain. By coming together with social media, Dr. Deanna, Jody, and Alicia created a wonderful resource center to fill a deep void in cancer treatment. Breast cancer is such an intimate and life-transforming disease, and it takes a lot to get through it. Improve your chances by gathering up what you need from women who understand how to pack that suitcase.

breast cancer Debbie Woodbury Pathways Women's Cancer Teaching Project The Cancer Hope Network Where We Go Now

Debbie Woodbury Speaks to Breast Cancer Caregivers

Post author By sarambarton
Post date April 23, 2013

About Debbie Woodbury:

Maya Angelou said, “There is no greater agony than bearing an untold story inside you.” The healing power of sharing her story as a cancer survivor compelled Debbie Woodbury to found WhereWeGoNow, an interactive community for cancer survivors creating inspired healing, wellness and live out loud joy. Debbie is also a blogger at The Huffington Post, an inspirational speaker, a support volunteer with The Cancer Hope Network, a member of the Carol G. Simon Cancer Center Oncology Community Advisory Board, a patient educator with the Pathways Women’s Cancer Teaching Project, a wife and mother, and a former very stressed out lawyer.

You can also find Debbie on Twitter and Facebook.

A note from Sara Barton, The Practical Caregiver:

One of the things I love most about what I do and what reinvigorates me time and again, is the chance to speak honestly and openly with people who have wisdom to share. I asked Debbie Woodbury, an experienced patient educator, if she would be interested in answering questions for my cancer blog. I wanted to tap into that fountain of expertise and help cancer caregivers understand the real issues involved with breast cancer. It’s too easy to think that caregiving is about changing bandages and driving a loved one to appointments. Healing is as much about the heart and mind as it is about the physical body. I think she speaks to that in a voice that is authentic and wise.

Sara:

Debbie, you’ve had the chance to interact with a number of women who have been diagnosed, and you’ve seen what they go through and how it affects their lives. What should family caregivers understand about the common difficulties faced by breast cancer survivors during treatment and even after treatment is over?

Debbie:

When you get a cancer diagnosis it usually comes as a shock. Many of us have never been sick before and are suddenly thrown into an unfathomable world of medical terminology and procedures. You are under constant threat, have no way to predict what will happen next, and are overwhelmed by all it takes just to survive each day. In a flash, you confront your mortality. It’s like being shipped off to war.

Up to this point, the patient and caregiver are usually united in their terror. I can’t imagine how hard it was for my husband to wait outside during my mastectomy and TRAM flap reconstructive surgery. Patients and caregivers often part ways, however, once they’re out of the fox hole of treatment. That’s usually the point where caregivers want to move on because they think “the worst is over.” This is a real source of disconnect between survivors and caregivers and survivors often feel guilty (and angry) about it.

Sara:

I think you’re right, that it’s a source of disconnect between survivors and caregivers. If anything, coming out of the fox hole is the time when the deep emotional impact of the whole experience is most likely to hit our loved ones, because the immediate physical crisis is receding. It’s really time to assess the overall situation and what it all means for the “new normal”. We tend to slap that “happy face” on everything and pretend life is hunky-dory, when it’s really not. I think cancer survivors can sometimes feel pressure to “soldier on”, when what they most need is to feel what they feel and process it. How else can you live with it? Families need to not stand in the way of all that.

I think sometimes, as caregivers, we’re so afraid of what our loved ones feel, we don’t want to really know, because we don’t have a Band-Aid big enough to cover that psychic wound. We have to get past our own sense of helplessness in order to do right by our loved ones. And we can’t naively hope that by focusing on the positive, we can somehow help our loved ones avoid the potential recurrence.

Breast cancer survivors seem to need more support than any one person can provide — why is it so important for survivors to share their wisdom, insight, and experience with each other?

Debbie:

I think the shock of a diagnosis, the burden of treatment, and the post-treatment disconnect between survivors and caregivers are common experiences of most, if not all, cancers. A breast cancer diagnosis heaps on an additional loss – the amputation of a very visible, “feminine” body part. Even with reconstruction, your body is permanently altered. This loss rocks many women to their core and it’s impossible not to be reminded of it every time you take off your clothes. It’s a lonely place to be, especially when family and friends want us to be over it.

We love our caregivers and watching them struggle with our disease is tremendously painful. That pain (and the guilt it can cause) can shut us down, lest we cause more pain. That’s why it’s virtually impossible to heal body image, sexuality, fear, and all the other emotional issues which arise without a support network of other survivors who “get it.” Sharing our stories validates our feelings and breaks through the loneliness of life beyond treatment. I call it the power of “Me too.”

Sara:

“The loneliness of life beyond treatment….” What a powerful phrase. But you’ve hit on an important point. I’m sure there are caregivers out there who feel that it’s just a matter of throwing more love at cancer survivors, as if that will make the pain fade away. The physical and emotional trauma of fighting the disease changes a person. I once heard a cancer survivor say she felt like she had been betrayed by her body when she was diagnosed with breast cancer. It seems like a matter of learning how to trust all over again, to believe that life can be okay, even with breast cancer. That’s not really something your family can do for you. It really does have to come from other survivors, helping you learn how to reemerge from your cancer cocoon.

How much do caregivers need to know about the specific details of what breast cancer survivors go through in order to better support the women they love and what are some positive ways to acquire that information?

Debbie:

The more caregivers know and understand the easier they make it for their loved ones. Of course, no one expects a caregiver to “get it” completely. That’s just not possible (just like it’s not possible for survivors to completely understand the caregiver experience.)

The best advice I can give a caregiver is to not assume cancer is “over” and to listen to and engage your survivor. I remember an especially poignant comment on WhereWeGoNow written by a husband of a breast cancer survivor. His wife asked him to read my post, Running on Empty – Coping with Cancer Stress. The post was important to her because reading it made her feel less alone. It also sparked a conversation between them and made him realize that “As a spouse, it is easy to focus on the physical aspects of dealing with this disease. After talking more with her and reading this post it is readily apparent that there is an on-going mental battle that will continue to wage with both good and bad days.”

Sara:

That really illustrates why it’s so important that caregivers learn as much as we can to help our loved ones. When we see life through their eyes, we can recognize opportunities to step up to the plate and give what our loved ones really need in terms of support. In what ways can caregivers prepare themselves to recognize important sign posts and milestones?

Debbie:

Just like the survivor, a caregiver should create his or her own support system. Find medical professionals, including therapists, who readily share information and offer support. Join caregiver support groups. Read blog posts written by cancer survivors, who are amazingly open and honest about their experiences. We heal physically and emotionally from a cancer diagnosis and treatment. The more information you collect, the better able you are to recognize the sign posts and milestones of that healing and give support. What is most important is for everyone, survivor and caregiver alike, to appreciate that what the survivor is going through emotionally is a normal part of healing.

Sara:

So true. And healing is very much a multi-layered process that takes place over time. It can feel like one step forward, two steps back, especially as survivors process their emotional experiences with the disease. I think sometimes cancer caregivers misunderstand what their loved ones are going through when they express anger or sadness at their losses. What are some positive things that caregivers can do to help breast cancer survivors feel less lonely and less isolated?

Debbie:

A few months after my mastectomy and reconstructive surgery my husband and I were invited to dinner with friends. I told him I didn’t want to go because I was tired of telling people I was fine when I wasn’t. Being a pretty straight-forward guy, he suggested I tell them the truth. The idea actually shocked me, because I was desperately trying to hold it all in, but it also made sense.

We went out to dinner, the inevitable question was asked, and I answered honestly. The reaction I got – empathy, concern and support – shocked me. Not because I didn’t expect it from good friends I knew to be wonderful people, but because I had been isolated for so long and didn’t feel safe sharing my feelings.

That discussion was a turning point for me. More than anything, I needed to know it was okay to be where I was and that I deserved support. As wives and mothers we are usually the emotional caregivers. A lot of us just aren’t comfortable asking for it for ourselves. A caregiver who makes us feel safe to express our feelings opens the door to communication and helps end our isolation.

The other thing caregivers can do is encourage their loved ones to create strong support networks. This is vitally important for two reasons. First, no survivor can effectively heal without the validation of others who understand and emphasize. Second, no caregiver should take on the task of being the sole source of support for a survivor. It’s an impossible job and bound to burden the relationship.

The bottom line is this: We are women and most women like to talk with other women about our lives. Now that cancer is a part of our lives, we need the sisterhood even more. As we share, cry, and even laugh, our load is lightened and that is the precious gift of support we give to each other.

Sara:

Your words have a powerful resonance, Debbie. I’m sure there are breast cancer survivors out there who needed to hear your message today. And I’m just as sure there are cancer caregivers who will take these words and find new ways, meaningful ways, to support the women they love. A good caregiver never stops trying to find what will bring true comfort to a loved one. As you said, we really need to let others into the caregiver circle. We should never feel left out of the process when our loved ones need to get support from other breast cancer survivors. It’s a matter of opening our eyes and our hearts to what is needed, regardless of who brings it to the table. That sisterhood of survivors provides some powerful medicine to women going through the healing process, and the more we encourage and support our loved ones honestly and effectively, the better life will be for everyone. Thank you so much for sharing this with us.

#BCSM advanced breast cancer Alicia Staley breast cancer cancer research Dr. Deanna J. Attai Jody Schoger Women with Cancer blog

Jody Schoger Wants to Make a Difference in the Lives of Women with Cancer through Social Media

Post author By sarambarton
Post date April 4, 2013

In my continuing effort to provide resources and support to cancer families, I would like to introduce you to Jody Schoeger. Her blog, Women with Cancer, has some wonderful insight into how cancer affects women and their lives. It’s not just about living with cancer. It’s about living life out loud with cancer.

What would you find if you met Jody in person? I was recently lucky enough to have that pleasure. We actually first talked on a little putting green in Arizona. My first impression of her was of a real Texas dynamo in a tiny package. Fit, funny, and even feisty when it comes to cancer, Jody’s warm personality comes shining through every step of the way. Her ready laugh and her obvious delight when making a decent putt put her in the category of social powerhouse. But it’s her work with cancer survivors that best defines her.

When I approached her about doing an interview for my cancer blog, I had enough good sense to ask her to be straight with me. I wanted to provide the information that she felt was most important for cancer families. The great thing about Jody is that if you throw her the ball, she’s more than capable of making a winning shot. I thought I would focus on ways to help men understand the issues in having a wife or girlfriend with cancer. Jody wisely pointed out that not every woman has a man to hold her hand every step of the way:

“There are a few things to consider. Not all women with breast cancer are married or in a committed relationship; so the questions need to better reflect the audience. There’s a large percentage of single parents and and/or divorced single women who also are navigating cancer.”

That answer is one of the reasons I felt comfortable posing questions to Jody. She speaks from the heart and the head. She’s always looking for new ways to reach out to women with cancer.

If you were to go to Jody’s blog, you’d find she covers related topics ranging from a very poignant letter from a breast cancer patient grappling with the effects of her treatment on her marriage to the latest news on the National Comprehensive Cancer Network Survivorship Guidelines to the effects of chemo brain on the mind and ways to improve cognition. She also has a great list of other cancer blogs that will increase your ability to find information and inspiration about cancer. Resources are so critical when you’re feeling overwhelmed about cancer.

Jody’s professional background is impressive. If anyone is capable of creating an online cancer community to support, empower, and motivate women with cancer, it’s she. With more than 25 years of experience in public relations and communications in health care, science and education, she brings a lot to the table. Diagnosed with a locally advanced breast cancer in l998, she pushed herself to survive and thrive, and now she offers women sage advice and information. I could list all of her impressive credentials, but the truth is that what she says stands on its own.

One thing I do want to mention, however, is that Jody is one of the founders of #BCSM, breast cancer social media. The virtual meetings take place on Twitter every Monday evening at 8 pm CDT.

bcsmcommunity.org.

(Alicia Staley and Dr. Deanna J. Attai are the other two brains behind this social media chat fest. I also met Alicia, a three-time cancer survivor, and I’m hoping to interview her at a later date.)

Sara: If you were to address the caretaker of a newly diagnosed woman, what are the most important things would you want him or her to know about breast cancer and its treatment?

Jody: From the point of diagnosis, both the caretaker and patient are in new territory and changing roles. There’s no doubt that cancer stresses a relationship. So first, process the shock and your own feelings as honestly as you can. Then it’s important to determine your strengths as a caretaker. Think about how you can best support the woman you love. Be honest with yourself and with her. As she has a treatment plan, and medical appointments begin to fill your calendar, think about your own plan to take care of yourself. Breast cancer treatment can go on for up to a year or longer. Your own efforts to maintain “islands of free time,” for exercise, a round of golf or other enjoyable activities are incredibly important. Many of us go into Super Hero mode when a loved one is diagnosed. That’s all right for a short period of time but not workable for the long term.

Sara: As someone who was a caregiver for a lung cancer patient, I can attest to that as being great advice. I think we really do have to face our own feelings as honestly as possible and to process them, so they make sense. A number of caregivers charge forward into the role without really understanding how complex it really is. If you don’t know what you can give, you can’t really find other members of the caregiver team to fill in the blanks. And you’re also right on the mark about Super Hero mode. This is a marathon, not a sprint, and we have to be prepared to go the distance.

What steps would you advise newly-diagnosed women to take to help them prepare for what lies ahead?

Jody: The first thing is how essential it is to learn about cancer, what the recommended course of treatment is and the range of side effects that might be anticipated. There are many different forms of breast cancer. Most don’t realize how complicated breast cancer is and that treatment may involve only surgery, or surgery plus chemotherapy, radiation and/or hormone therapy in various combinations. It’s a lot to take in at one time. But you don’t want to look back either, and realize that you could have made a better decision about treatment. You have time to think, learn, and talk with other survivors. There’s only a small subset of breast cancers immediate action is necessary.

The next thing to do is organize for illness, as I call it. I immediately got a large binder to hold information and medical reports. Then a friend created an email list to keep coworkers informed. Others find starting a blog is helpful. The key is that you reorder your priorities so that taking care of your cancer is at the top of the list.

Sara: One thing I learned from speaking to breast cancer patients is that treatment really is complicated when compared with other types of cancer. It all depends on what type of breast cancer a woman has. Some are more aggressive than others. And this is a disease that often is affected by hormones. It’s also a very intimate kind of cancer, which can change our perceptions of ourselves as women and sexual beings. Your point about rushing into treatment without understanding the big picture is well-made. If women aren’t at immediate risk, it makes sense to delve into all the information and weigh it before choosing the right course of action.

I’ve heard a lot of women say that “men just aren’t there” for them during cancer treatment, or fall short in terms of offering the right kind of support. Are there ways for women to close the gap on what husbands and boyfriends can’t do for them? Would a “cancer mentor” or “cancer buddy” make a difference?

Jody: This question is problematic in a sense. It’s not realistic to expect any partner to meet all of our needs even when we are well. Women learn from and lean on their friends all the time. This is the same in cancer. Finding other survivors is key. They can make good suggestions and provide reassurance that your family can’t. There’s nothing like walking along with someone who has literally worn the same shoes. Today with interactive platforms like Facebook and Twitter it’s easy to connect with other breast cancer survivors.

Sara: That’s true. With all of the complex realities of cancer, it really does help to speak to other women who have “been there, done that, and got the cancer tee shirt”. I’ve had other cancer survivors tell me that their families just “didn’t get it” when it came to the right support. Being able to reach out to experienced cancer survivors is very helpful. I’ve found that very few people who have gone through treatment are unwilling to share insights and offer solid advice. It really can demystify the process.

Women are so often the caregivers in the family, yet during cancer treatment they need their own nurturing. Are there strategies to help them get their own needs met and lose the guilt over what they can’t do for other people?

Jody: This is often the hardest for a woman if there are still children at home. At the same time, I’ve seen many families navigate this successfully. The shared characteristics were a sense of teamwork and excellent communication. So there aren’t any strategies per se, but a shared realization that getting through treatment is something that is tough and can be managed. It’s important for everyone involved to maintain a sense of daily life and order. And the funny thing about cancer treatment is that you aren’t sick all the time. There are good days and bad days. Once you learn how to best care for the low points following a chemo treatment many things fall in place. It’s also important to distinguish doing from being. You certainly can still love and be with your loved ones, that doesn’t change. But if a woman’s sense of self is tied up in everything she “does” for others then family will need to reorder its expectations. All of this is about facing change.

Sara: Maintaining a sense of daily life and order is all about imposing structure in the face of the chaos of cancer. Sometimes people surrender to the impact of the disease and that begins to drive the day. By taking charge of home life and making it as normal as possible, families are able to remind themselves of what is still “normal”, so cancer isn’t in charge.

I also like your point that you can learn to navigate through the low points of chemo. It helps to recognize the patterns of side effects and when they will pop up, so that you can make the most of the days when you are likely to feel good.

You make a valid argument that the whole family may have to “reorder” its expectations of a woman with cancer. We women sometimes take on the “doer” role and find it hard to surrender that because we get so caught up in “the rules” about who and what we should be. That can be a trap for many women, but it also sounds like families can get past that by letting go of those expectations and working to help a woman get through cancer treatment. What’s the most important thing cancer taught you about life and love?

Jody: Cancer reorders your priorities. There’s no doubt about this. Nothing gets your attention faster than a potentially life-threatening condition. What I’ve seen is that the majority of women discover how strong they truly are. Early on, a lovely woman passed this on to me, “If you didn’t know how much you were loved before, just hang on. You’re about to find out.”

Those words have never left me. What a gift.

Sara: Truer words were never spoken, Jody. When cancer strikes a family member, it’s a chance to realize what matters most in life. We can let go of the petty nonsense and focus on using what we have to make a difference in this world. It’s hard to squander our lives when we know how precious time is, love is. Thank you so much for allowing me the opportunity to pose these questions. I hope women take heart from your words of wisdom and seek the support they need.

Jody Schoger’s Women with Cancer Blog
BCSM — Breast Cancer and Social Media Twitter Community Site

advanced breast cancer breast cancer cancer caregiver caregiver education caregiver psychology family caregiver ovarian cancer

Can We Improve How Men Provide Care to Cancer Patients?

Post author By sarambarton
Post date March 28, 2013

I’m a big believer in men. They can do some amazing things. Lord knows they’ve achieved some wondrous feats in life. But when it comes to being cancer caregivers, let’s just say the jury is still out on that, especially when it comes to women and “intimate cancers”, like breast, ovarian, cervical, and even colon. Nothing breaks my heart more than to hear a group of breast cancer survivors talk about the rejection they experienced from the men in their lives. It makes me want to go out and rattle some cages, asking, “What the $#@&* is wrong with you? How could you do that to her? Don’t you know how fantastic she is?”

Why is this? I have my own theory. We are, by nature, sexual creatures. We imagine, we fantasize, we dream of those perfect moments on some sun-drenched beach in the middle of nowhere, where wrinkles and cellulite don’t exist and “close encounters of the flesh kind” lead to wild and crazy passion, legs up in the sand. Real life very often doesn’t look like that. Emotions can get messy, especially when cancer’s involved and there’s great uncertainty in prognosis and diagnosis.

As a family caregiver, I’ve seen both sides of the story and I’ve reached a conclusion. Men are capable of doing more to really support the women they love and women need to appreciate that men provide that care differently. What does it take? Education on both sides. Best time to do it? At the beginning, in the early days of treatment.

Men need to know what the women they love are facing. How do they get that information? Let’s be honest. Most guys aren’t going to go to support groups to sit around and listen to emotionally-charged conversations about cancer. By nature, men tend to be proactive when it comes to problems. They’re constantly on the prowl for fixes. Cancer? Not always turned off at the flick of a switch. You can’t do X and be sure you’ll get Y as the result. You can knock your head against that tumor till the cows come home and you won’t put a dent in it. While most men are action-oriented, cancer support for women is often far more emotion-oriented. It can feel like oil and water mixing. Someone’s bound to slip on that slick and get hurt.

Men often process information and situations very differently than women do. Maybe that’s our biggest mistake as women, that we assume if men really love us they’ll do things our way, to please us. As someone who used to work with male psychiatric patients, I can assure you that it’s a hurdle not really worth the effort. The human brain is what it is. It’s wired as it’s wired. You can’t suddenly change the system. If the connectors and receptors in the brain don’t work that way, no amount of wishing will change that. Men are what they are, just as women are what they are. Your relationship up until cancer hits is pretty much what you might expect through treatment. Some men are talkers, but most aren’t. If the man who loves you does for you, you can probably go on expecting that. But if the man you love tends towards narcissitic behavior, if you have to fight your way to the mirror every morning, cancer’s not going to improve that, and your body image is probably going to take a hit over it.

We can and should take advantage of the way men tend to think to improve how they care for the women they love. I know a lot of men who are “hunters”. They may not sit around talking about their wives and girlfriends going through cancer treatment, but they will and do go on the Internet in search of information and answers. They will and do read personal accounts that provide a lot of technical information and concrete advice on what to do and how to get through it. Men need proactive tips and encouragement for helping their wives and girlfriends through cancer.

In other words, maybe it’s time we “train” men to be cancer caregivers according to their learning styles. Perhaps by taking an overwhelmingly emotional approach, we’ve failed to tap into the strengths that men can and will bring as cancer caregivers. Men are, by nature, usually good at “survivor” mode. They are body-observant. They eat, sleep, and hunt for what they need to live. Cancer is a very emotional disease and very often our introduction to it is chaotic and confusing.

What if we could reach out to men in the early stages of providing care and help them to find concrete ways to do it, ways in which they can make a positive difference for the women they love? I’ve had more than one man tell me over the years that women should never pay as much attention to a man’s words as his actions. Men will often say what women want to hear in order to get what they want. In cancer care, that’s not always a smart move. Women can feel tremendously betrayed when the words are hollow and empty.

In my conversations with men over the years, I’ve drawn a conclusion that may come as a shock to any woman who has felt her man didn’t care. Men care profoundly, deeply, sometimes even madly about the women they love and even the women in their families. But cancer makes men feel utterly powerless, and men don’t normally do “powerless” well.

I’ve seen that frustration up close with a man whose sister had a double mastectomy. His anger, his rage at what she went through in battling the disease was close to the surface. I could observe how raw this wound was for him. Why? Because he was so used to being a protector, the big brother who always looked after his baby sister. There was little he felt he could do for her as she faced this nasty foe. This caring, compassionate, strong man didn’t have the tools he needed and it infuriated him. It wasn’t that he didn’t care, it was that he cared so much, it was overwhelming. What happens when men have a much more intimate relationship with the women they love? What happens when husbands and boyfriends face that same powerful wall of emotions? Very often, as a matter of self-preservation, they turn off their emotions and just move on automatic pilot. That can come across as cold and unfeeling when the truth is they care too much to let it out.

I’ve heard women express their disappointment in how husbands, boyfriends, and even male relatives deal with their cancer. I definitely get it. Every woman wants to believe that no matter what happens to her, the men she loves will stand by her through the battle. So, how can we make that happen better?

Maybe we need to dispense with the myth that men and women aren’t equal as family caregivers. Just as male nurses and female nurses are equally capable of providing quality care in the medical setting, and male and female physicians must handle the same physical patient issues with equal competency, there’s no reason men can’t be wonderful caregivers. I still think that the style of care tends to be different, with some basic shared traits. Just as we used to assume that all women make great mothers, cooks, and homemakers, we have learned that’s not the case. Women aren’t born to be good with kids. It takes experience and education. Many of the women in my generation grew up taking care of siblings, neighborhood kids, and even worked jobs as teenagers that put us in the position of having to cope with runny noses, wayward children, and unexpected disasters (Lord knows I’ve pulled my share of kids off of roofs and stopped some of the world’s dumbest stunts just before that final idiotic ride off the ramp). We tend to forget that we learned how to care for the people around us. By the same token, I’ve known some women who were absolute disasters as caregivers. They were so anxious about their own needs, they weren’t capable of nurturing another person. A good caregiver is strong, with a thick skin, a hard head, and able to weather the storm, but you get that way by training, not by chance.

What does it take to be a family caregiver? Education, not estrogen. An understanding and an appreciation of what men and women can and can’t do. We should utilize men in the caregiver situation according to what we can teach them to do better. And we should recognize that, while they have strengths that can and will support women with cancer, they are not going to suddenly sprout wings and turn into cancer angels.

One of the things I always try to emphasize as a caregiver educator is that every patient needs to bring a team to the caregiver table. Every member of the caregiver team is going to be different from the other people involved, and folks will bring what skills they have to the table. The trick is to use the raw ingredients to make a complete meal, and that often means gaining new skills as you go. It’s important to recognize that every patient is different because of diagnosis, prognosis, energy level, independence level, emotional quotient, and a myriad of other factors. But if we begin to understand how to teach men to be better caregivers, not by trying to turn them into the female equivalent, but by using them in ways that make sense according to their capabilities, we should be able to produce some amazing male caregivers. It’s all about bringing out the best in the men who will care for these women with cancer.

Bottom line? We have some amazing wives, mothers, sisters, cousins, neighbors, and friends who have the capacity to survive cancer, and we should all strive to make the quality of their survival the best it can be. There are a lot of good, decent men out there who feel completely lost in the cancer fight. We can and should give them directions on what they can do better to support the women they love, through educating them in ways they can utilize to connect physically, mentally, and most importantly, emotionally. There will always be men and women who live life superficially, who can’t get past the scars, but for those people who hold promise as cancer caregivers, let’s empower them.

advanced breast cancer breast cancer cancer caregiver cancer treatment Cancer Treatment Centers of America CTCA CTCA Blogger Summit Goodyear AZ service dogs Western Regional Medical Center

Cancer Treatment Centers of America Honors Service Dog Pee Dee

Post author By sarambarton
Post date March 23, 2013

I admit it. I’m a people watcher. I like to get the feel of a place by observing the comings and goings of people. At the moment, I’m at the Cancer Treatment Centers of America Bloggers’ Summit at the Western Regional Medical Center in Goodyear, Arizona. During a break in the many presentations involving cancer technologies, I stepped out into the lobby, sat down, and just watched the passing parade. I wasn’t expecting pooches in service “uniforms”.

I had already found the two fish tanks flanking a big fireplace on my first visit. Fish gotta swim and they do here. The bright colors attract the eye and draw you in. I always like to see signs of life in a hospital, and that was a positive impression of the Western Regional Medical Center in my book.

But yesterday, on my second day here, I saw something I never thought I would see — a retirement party for a dog. Pee Dee, the chocolate lab, was hanging up his hat as a service dog at the hospital.

All the other dogs were there for the party, some frisky and tail-wagging, others gently awaiting your approach. It was a nice bunch of pups, and it was clear from the reactions of the people passing by that these dogs were well-loved, by patients, by family members, by staff.

I watched all the hands come out to greet the dogs. Some people stopped and bent down to say hi. Others gave an affectionate pat or a little scratch behind the ear in passing. The ladies who accompanied the service dogs were cheerful and kind, too. It gave the lobby of the hospital a friendly feel. This is no cold, sterile medical environment. And all that was before the party started.

It was held outside, in the courtyard, a space filled with barbecue grills and benches, just off the sports area, where a putting green awaits. (The current LPGA champs have nothing to fear — it took about 50 shots to make my only hole-in-one of the day….) There was cake, a small ceremony, and lots of chuckles and cheers for Pee Dee.

Why do I write about a retirement party for a service dog? That’s what you get at the Cancer Treatment Centers of America facility here in the Arizona desert. People who stop for ten minutes to thank a pup who has cheered patients through the cancer treatment process. It’s about connecting to life, to the little things we can and should celebrate together. Warm hands, warm hearts help cancer patients get through the challenges of cancer treatment, but they also get the staff through, too.

That’s why I like to just sit sometimes and observe, especially when I’m in a new place. I don’t want people to tell me what it’s like to be there. I want to see it for myself. I want to watch what patients and family members do, to see their reactions to a place. Are they comfortable or miserable? You can see cancer patients in the garden, sitting at tables in the shade, enjoying the day, or wheeled out in their wheelchairs by loved ones. This doesn’t feel like a hospital, even though I know it is. It’s a place where patients can take a break and get outside on a pleasant day — Arizona has a lot of those at this time of the year. It’s a place where even a dog like Pee Dee gets his due.

advanced breast cancer breast cancer cancer caregiver Cancer Caregiver Roles: What You Need to Know caregiver education Dr. John Garnand

Real Men Don’t Run — Dr. John Garnand’s Role as a Cancer Caregiver, Part Two

Post author By sarambarton
Post date March 4, 2013

Part One — “Real Men Don’t Run”

This is a continuation of the February 28, 2013 interview I did with Dr. John Garnand, PhD, who cared for his wife, Susan, over nearly a decade as she faced breast cancer. If you missed Part One, I encourage you to check it out. Dr. Garnand brings a new prospective to caregiving that not only will open your eyes, but your heart.

Sara:

You really drill home the point for cancer caregivers that it’s critical to maintain records, not just to track a loved one’s health, but also to handle the financial issues. When you discuss the economics of cancer management, you point out there can be errors in billing, differences in insurance coverage in terms of out-of-pocket expenses, and even talk about how the loss of a salary during treatment can have a profound effect on the household. How did it help you as Susan’s caregiver to track so much information?

John:

First of all this is probably the most basic criticism that people make against our Healthcare System. Its accounting is impossible to understand and interpret. Errors occur. Everything is coded, and errors slip in.(See pp.56-57). We were billed over a year later for a procedure (birthing) that was not possible for someone who had a hysterectomy.

Sara:

Yikes! It shows that vigilance is important when handling all the medical expenses. This is especially important for families handling diseases over the long haul, because every dollar counts. I think there’s a tendency for stressed caregivers to just assume all bills are legitimate.

John:

The tracking of information can be tedious, but occasions come up where it is the only way to forestall a real problem.

Sara:

But you’re not just advocating that caregivers track the financial issues associated with medical bills. You make a good point that caregivers have a very crucial job in helping their loved ones during treatment.

John:

Tracking of information is especially critical when the patient is left alone while her caregiver has to leave the home to go to work. It then becomes the patient’s responsibility to take the right meds, at the right times. We went to a family reunion in Illinois. It was a long drive. I had to wake her up to take her Tykerb (5 pills, hour before breakfast), and recorded the dosage consumed. She went back to sleep. She woke up mid morning, and rushed over “to take her meds.” She had forgotten we had already done so. These are chemotherapy medications, and an overdose could create toxic shock, or a fatal reaction. Luckily, I showed her the record.

My wife was consuming 16 different medications a day, at different specified times during the day. If we had not kept physical records I feel very certain we would have had to face a disaster from overdose.

Sara:

I found that to be true also, John. I had a system to make sure the right medications were given to my mother at the right time and in the right combination.

When a patient is taking multiple medications, it gets confusing for patient and caregiver if it’s not tracked. We tend to think we’re being overzealous when we start to record details of caring for our loved ones, but it’s really all about patient safety. Hospitals and health care facilities tend to be meticulous with their medication disbursement, to avoid medication errors.

Studies on home care have suggested that one in three patients is vulnerable and the risks increase with the number of medications used. For cancer patients who have “chemo brain” due to the neurological effects of the powerful drugs or who are under mental or emotional duress during treatment, having a caregiver manage the medications is a great support. It’s one less thing to worry about, especially if it’s difficult for the patient to concentrate on details.

John:

Another aspect of record keeping is every time you go to a physician’s office for any reason; you are expected to fill out the patient’s medical history and medications.

Sara:

Having a copy of the current medications is absolutely imperative, especially if patients are seeing many different doctors. It’s important to make sure that everyone is on the same page. I also used to do this for my mother, and I found that adding the over-the-counter medications was important, too, since some of them interfered with the prescribed drugs.

John:

If you can record these ONCE ahead of time, you can run copies and include them with the required paperwork—saving time and frustration. This is the logic behind Exhibits 1a and 1b.

Sara:

A lot of men find it a daunting task to be caregivers for the women they love during cancer treatment. I think a lot of them feel powerless to have a positive outcome. Cancer is such a tough opponent. You clearly took on the role as Susan’s champion and tackled some pretty important issues as a spouse. I appreciated what you said when you talked about the importance of finding new ways to express intimacy and that cancer can “get in your face”. You sound like a man with a plan. If you were to coach a team of men who were thrust into the role of caregivers to the women they love, what would your pre-game speech sound like and how would you convince them they can get the job done?

John:

Wow, Sara! How on earth am I to answer this question? (A good thing.) You have correctly picked up on the underlying motivation I had when I wrote these parts of the book.

Women tend to have experienced some aspects of nurturing and caregiving in their experiences of managing the family and children. But men are programmed to the world of work, of competition, of fighting or sports. They are repulsed to change a dirty diaper. This has a cross-cultural aspect as well….as I have found out with my work on a Spanish translation of this Caregiver book. I really had the motivation to write this section to almost shame the blockheaded husband into a nurturing role.

I had the crazy idea I could make some headway by example, better than by argument.

Sara:

It’s understandable that men might be resistant to the idea of being caregivers for the women they love, but I think you’ve put yourself out there as a great role model. If you think about it, there’s really nothing “girlie” about the role of cancer caregiver. It takes strength and courage. So, John, how would you rally the troops?

John:

The pre-game speech would probably be like this—-This is not just her struggle, her fight. She needs her partner now. This requires a team effort, a team commitment. You are now involved in living out your vow to her—-“in sickness and in health” Now is where you live out “…it’s all about her.” Now is your time as well.

Sara:

It really is all about commitment, isn’t it? And teamwork. I think men need to know that this is a very noble, decent thing to do. It’s getting into the action, instead of hanging around on the sidelines. What else would you tell them?

John:

Now is your call—now is your challenge to live this out. This is the finest hour of your marriage. Now is where you man-up.

Sara:

And what would you say to the women in their lives who need care, who might be reluctant to trust men with the intimate issues of cancer and the tough side effects?

John:

I think the answer to this question is bound up in the quality of the marriage relationship. If the guy has always been controlling and estranged from intimacy, the patient may have a hard time with issues of intimacy, or side effects.

Our relationship was very different. I found out quickly that the more independent and free I could make her, and support her decisions, the deeper her love became, the deeper her response—because it was freely given. The “freer” the “deeper.”

Most relationships don’t go this far. In her words, we made a “….mystical, musical, magical life.” A life where we looked upon everything as an adventure, not just a journey together. Laughter, day and night. I guess, I hope that if we can model this kind of living, it would create joy in our world and spread to the community.

Sara:

Susan comes alive through the pages of your book, in the ways you describe her, and in the ways you describe your efforts to make her life as comfortable and meaningful as possible. She clearly inspired you to be a better man.

John:

When she died, a huge part of me died with her. I tell people, I would have instantly traded places with her if I could. I would have accompanied her to show her the way, but I could not find the Lilly pads on which to step.

I have been thinking about the Caregiver book. It was cathartic to write this book. I hoped we could help other cancer couples became ” …more loving and more proficient” in their care of each other (p.3). Truth is, I had to write this book. There was no noble or generous motivation. I had to alert people to the financial devastation that was staring them in the face, and I had to tell them her story, at least in vignettes. Maybe the next book should be autobiographical “Susan’s Story”.

Sara:

I’m looking forward to reading that. Obviously the two of you shared a lifetime of learning about each other, and cancer didn’t stop you from continuing to grow as a couple.

I think the problem for a lot of cancer caregivers is there is such a learning curve as they move through the process. Not everyone will immediately understand all the issues involved in helping a loved one get through it. Couples will face the disease together with the strengths and weaknesses they share, some more successfully than others.

John:

I guess I don’t have a real answer for you. It depends….on a case-by-case basis. I have the hope that somehow, by the grace of God, the messages in this work will be useful to those who read it. That, in the final analysis, is all I can ask. My prayer for couples experiencing cancer, and traveling the cancer journey together, is for their peace.

Sara:

I think a lot of couples going through this journey will be heartened by your approach, John. It’s not only inspiring, but also very comforting for loved ones to know that there are steps cancer caregivers can take to provide comfort in many ways, whether it’s making sure that the roof stays over your head, that you’ve taken the right medications in the right dosage, or that there’s still some joy to experience in life. Cancer patients will appreciate your efforts to educate and inform spouses.

I also think that caregivers who are stumped on “What now?” will find some positive focus and be able to begin to develop a strategy, not just for the short-term, but also for the long haul, the “Where now?”.

You and Susan experienced the ups and downs over the better part of a decade, through the good times and the not-so-good times that cancer management brings. I think your ability to write this book is a testament to that dedication and commitment to each other. I hope you continue to share with cancer families.

Notes on John and his philosophy, provided to me for this interview:

John believes we become what we learn. He believes that no one is fully prepared when the comes to becoming a caregiver to a loved one who has been diagnosed with a major disease. He feels that Caregiving is “on-the-job-learning” which lead him to writing his book, Cancer Caregiver Roles: What You Need to Know. The book is his effort to pull together all the information that he has had to learn over nine years of attending to his cancer patient loved one. It is his hope that this compilation will make it easier for other Cancer Caregivers faced with similar circumstances. John’s loved one taught him everything in life that is important to learn. And he now believe that the acquisition of wisdom is just being open to learning, and that anything good that we have learned will never be completely lost. In its existential context learning defines our lifetime.

Dr. John Garnand’s Cancer Caregiver Roles blog

About the author:

John Garnand has spent a lifetime as a teacher. Most recently, John retired from the Leeds School of Business of the University of Colorado at Boulder. For twenty-one years, he was an award winning instructor in the general areas of business strategy, management operations, ethics, and public policy. While at the University, he established the Multicultural Business Students Association, to help disadvantaged students compete and excel. Before this, Dr. Garnand held the position of Vice President for Administration at Regis University in Denver, CO. He was also a graduate faculty member in the Regis University Masters of Business Administration (MBA) program.

You can find John’s book at these retailers:

Amazon Softcover $8.99 E-Book $3.99

Barnes & Noble Softcover $8.99 E-Book $3.47

Kobo Books E-Book $3.49

Google Books E-Book $3.03

Balboa Press Bookstore Softcover $8.99 E-Book $3.99