Monthly Archives: November 2013

The House of Mirrors Will Shatter – A Caregiver’s Story

In honor of national caregivers month we’ll be featuring posts about caregiving and caregiver stories. Today we welcome guest blogger, Bob Marcotte from You Mean, Besides the Cancer? who shares his perspective on being a caregiver for his wife, a cancer fighter.


Bob is “ribboning” to show support for cancer fighters. Join him and share your #ribboning pictures on Facebook.

BOB’S STORY

In the beginning, when the word “cancer” was still echoing in my ears for the first time, I recall feeling lost, almost abandoned. We were being barraged with new, unsettling information by the minute, and while our trusted family doctor answered my myriad of questions in perfect honesty, she eroded my strength every time she said, “I don’t know.”

Life during the cancer diagnosis stage was anything but clear, but once the diagnosis was confirmed, it seemed as if the world turned into a house of mirrors. Not only would no one commit to a definitive answer to any question we asked, now we were told we were asking the wrong people. Wait, weren’t you the same people who just diagnosed the cancer? How can you stop knowing and suddenly go mute?

Not Now!

The last loving act from our family doctor was to send us to a cancer center we never knew existed, to a doctor we’d never met, to discuss things we knew nothing about, but feared.

This is the beginning of every cancer journey; a day vividly remembered by patients and caregivers alike as the day that life, and everything it once meant, changed forever.

I was the caregiver that day; my wife was the recipient of the diagnosis.  That was four years ago, and if my present-self could go back in time and somehow tell my past-self about the meaningless suffering, the endless fatigue, the heroism, and yes, the joy we have experienced, my past-self would be dumbfounded.

I believe no words can fully express the cancer experience, even to myself.

But there are some thoughts that might make the early steps in your journey easier:

1 – No doctor will give you a definitive answer at the beginning stages of treatment. They see test results and have a sense of probabilities based upon their training and experience, but keep in mind that they bet your trust in them on each answer.  They will not speculate unless you ask them to, and if you do ask, tell them you won’t “hold them to it.”

2 – If you are the caregiver, be brutally honest with the doctors. The situation they find themselves in often intimidates cancer patients, and they stop communicating.  Tell the doctor what you saw, how you think your patient was feeling (and yes, your loved one is your patient, too). Some patients might get upset with this. Take the beating and move on. What you say in an appointment might be the most honest words the doctor gets to hear.

3 – EVERYONE is a part of the care team, from receptionists to pharmacy techs to surgeons. Treat them all with great respect. Show them that you value their help, and you will get the best they have to offer. Ironically, they don’t always remember my name, but they always remember my wife’s!

4 – If at all possible, build a network of support.

5 – Regarding #4, once the news of the diagnosis spreads through your family and friends, prepare to be hit by a wave of love and concern that is overwhelming. After it crests, step back and realize that these people want to do something to help, and often what they do doesn’t. Prepare to forgive. Yes, I know you already have so much on your plate that finding the energy to forgive seems like overkill, but hanging on to anger takes more. Your network will eventually boil itself down to a reliable core of helpers that will not add drama to your lives. That is your true network.

6 – Cancer treatment is not an example of democracy in action. Listen to everyone’s opinion, but the final decisions belong to you and your loved one. This WILL offend someone at some point, most likely a family member. See #5 about forgiveness, even though there is a chance it will not be reciprocal.

7 – Find Joy. I know those words seem to mock you right now, but I mean it.  Whether your time together is long or short, don’t waste it on mourning until it’s time to mourn. The hardest thing about this already difficult job is keeping optimism. Without it, the weight is heavier and the suffering deeper. FIGHT to stay optimistic if you have to, but stay optimistic. It makes a difference.

Over time, the house of mirrors you once felt abandoned in will shatter, and on the other side you will see the people and the path you need. I promise you that there is love and support waiting, but even after four years of caregiving I cannot promise you’ll find the answers to all your questions.

Hold tight to hope and each other. I won’t lie to you, the days ahead of you are some of the most difficult, and meaningful, that you will ever live.

 

ABOUT THE BOOK

If everyone’s life is a book, and every day a page, then there are some days that deserve to be dog-eared. Your high school graduation, your wedding day, the birth of your children, and the day that your doctor discusses cancer with you for the first time.

If you are a caregiver, or about to be one, this book can hopefully shortcut the learning curve that sliced me to shreds.

This book is the story of my wife’s cancer and our journey through the medical system that eventually led us to one of the most cutting edge, lifesaving surgeries on earth. You can purchase it here for $1.99.

 

ABOUT THE AUTHOR

My name is Bob Marcotte and I am a musician, photographer, author and caregiver. Unlike my other job titles, the caregiver job title came without training and with little notice. Now, it’s the job title I am most proud of.

I live in California with my wife, Carole, who is still recovering from her massive surgeries. We are guarded and kept company by our two dogs and a cat, all rescued animals. After the Stanford medical miracle, perhaps Carole can be considered ‘rescued’, too.

You can contact Bob at bob@besidesthecancer.org .

 

Stories from a Breast Cancer Caregiver

Today we welcome guest blogger, Steve who has been a caregiver for his wife, a breast cancer survivor of four years. In honor of national caregivers month we’ll be featuring a few posts about caregiving and caregiver stories.

Steve is “ribboning” to show support for cancer fighters. Join him and share your #ribboning pictures on Facebook.

My wife, Tricia, asked if I would write about my caregiving experience. We were at our favorite watering, hole spending some quality time together, when she asked me. I teared up! Crap, as I’m writing this now I have to wipe my eyes. I asked myself, “Why is her request causing this emotional reaction”? I’m a Director at an electronics company and deal with issues and problems every hour, I’m tough! Yet her simple request impacted me deeply even though it has been 4 years since we started our journey.

So, out of the blue she pops this question, what is a caregiver? I couldn’t articulate anything but tears. I didn’t know. I wasn’t focused on being a Caregiver. I focused on my wife and what she needed. It was that simple. Decisions were easy, even though the journey wasn’t. My head was empty, void, nada (typical for most males), but I still agreed to write something.

I’m not a feelings kind of guy, and I’m definitely not versed in expressing them, let alone writing about them. Half of the time I can’t figure out what I feel and have to ask Tricia. Yet, here I am hunting and pecking on this keyboard as I enter my world of feelings as a caregiver.

I remember back to the moment when the word carcinoma was first mentioned in our house. When that word was first uttered to label what Tricia had on Aug 19, 2009 I was scared, more like petrified, at the thought of losing my partner, my lifemate, the other half of me, the one I have my history with and so many dreams yet to fulfill. Using the word cancer hit me hard and everything in my world was instantly reset, all our plans went on hold. I knew nothing about cancer. Out of the blue this thing capsized me in less than a pico second! Talk about a transformation. I should have been aware of the possibility as 1 in 8 women are touched by cancer. Just think about it. Start having your friends count off 1 through 8 and then ask who it will be. Ignorance was bliss!

I recall the frustration with all the hours sitting in waiting rooms and then not hearing the news you wanted to hear from the doctors. I can’t express the feelings any better than my journal entry back then: “Then we waited, and waited, and WAITED some more. I’m not very patient you know! It was about 1.5 hrs into her surgery when Dr. McDreamy (my daughter, Brittany, came up with that because of his hair) came out to speak to all of us. You know Tricia, she always has a crowd around her wherever she goes. There was standing room only! Our hopes were high knowing she was out of surgery early. Good news right? Not! Dr. McDreamy shared how he was able to identify the Sentinel Lymph nodes (I won’t refer to them as Lump nodes anymore!) and one was cancerous. Hearing that I instantly went numb! There were tears as we listened to how he was going to take longer and needed to go back in and remove all 15 of her nodes. He mentioned she was going to need chemo and answered our questions. Well, we knew this was a possibility.

An hour later we were summoned again and listened to more sucky news. While taking out the Lymph nodes, he had the breast tissue examined. The tissue did not have clear margins. As such, he extracted more of her and had it tested. The second extraction did not have clear margins either. Seems Tricia has to be different! She has another form of breast cancer (sorry, I went blank at that point and can’t remember which one it was). Her cancer is throughout her breast, so he stopped the cutting, buttoned her up, and started to bring her back (wake up girl!).” I felt such anger and helplessness. I’m a Mr. Fix-It but couldn’t engineer these outcomes.

Each day I would wear a happy face, independent of what was going on within me. I displayed a strong, positive, calm and hopeful outlook. Inside I was capsized and drowning. Friends and family would ask, “How’s Tricia? We’re praying for her”. She was the one touched by cancer, but I was too. There were times I felt alone amongst all our friends.

I would try to escape sometimes, typically late at night by myself. I would climb into myself to let the anger and worries out. Let’s be honest – pity parties. But my wife couldn’t escape. Cancer was always there, now part of her DNA. I would frequently journal during those pity sessions, so my messages were raw and emotional, very opposite of my wife’s thankful and inspiring messages. Remember, I’m not a feelings kind of guy! Again, my journal entry on Tricia’s blog articulates this best, “So it is 1 AM as I’m pounding on this keyboard and messing up the character and flow of my wife’s cancer blog. I am scared, for tomorrow morning she, “the better part of me”, heads into surgery. As a husband, this disease cripples you. You quickly learn there is NOTHING you can do except to be there, care for her, and listen.“

I encountered plenty of anxiety and insecurity and would describe it as a war, battles to be prepared for and fought. Journaling comments like, “It has been mostly quiet on the Mid-Western front. Last week it felt like we could hear the explosions off in the distance. But they were not upon us, yet!” Things were hectic and we were running around starting to prepare for what is coming at us. Later I wrote, “That night, when Tricia got home, I sensed something was wrong as soon as she came through the door. My first thought was, “What did I screw up”? Then I remembered I have been earning lots of Atta-boys so I just asked her what was wrong. Her eyes filled with tears and she melted. She used the word Anxious a lot. The sounds of those cannons are getting louder at the McEuens.”

Frustration, oh yes frustration and confusion. I spent a lot of energy doing what I thought was needed. Prepare new tasty meals (at least I thought so), but see her push them away. Something about “smelling right”, “metal taste”, or heaven forbid, “no taste”! I cleaned the house like she would want to have it cleaned. I washed and bathed her. Listened to friends express their concerns for her and share their prayers. I would research and study cancer and try to educate others. I sat there, watched nurses connect poison into her power port and wondering if the incredible hulk was going to emerge. I would prepare a long list of questions for her doctors but not ask what I wanted to ask because I didn’t want to go near the forbidden room, it might crush me. I had to stay focused and listen because my mate would ask me later what was said. There was worrying over hospital bills and how we were going to manage. I would journal, “This ride has been an emotional roller coaster for me, from shock and fear to anger, to anxiety. Self inflicted I hate to say! I watch Tricia and I am learning how she handles it, one day at a time. She lives in the present moment and she faces whatever decision needs facing next. As such, she gets up each morning and says it’s a beautiful morning. I feel half the time I am on this damn roller coaster screaming as I zoom skyward or scared to death as I slam downward. All the while, Tricia is on the stable ground below me saying “come here my Honey”. I’m confused; who is really the caregiver here? To get off the roller coaster I told Tricia I would slow down, sit back and deal with things as they come. I would not get out there too far. That lasted about 30 minutes! I couldn’t sit back and not learn and try to understand what my soul mate is dealing with.”

There were plenty of lessons learned and surprises. One person who taught me a lot about the healing process was Cleon. Cleon was an elderly gentleman who would sit in the heat of the day in this little white parking hut in front of the Cancer Center’s parking garage. There were countless hospital parking garages but only the Cancer Center had a little white hut. It reminded me of a mini information booth. Strange place for an information booth. Countless times I would proceed toward the garage, in a hurry, and intended to zip past him and just park the car. I didn’t need directions, I knew what I was doing, but Tricia would never allow that. She would insist we pause at the little white booth and say “hi” to Cleon. Cleon would always have a warm smile and we would exchange a brief, “It is so good to see you today”. Then I would zoom off to find a parking spot. One day as I was trying to distract Tricia and sneak by Cleon, she put it to me this way, “They get it here. The hospital understand what patients are going though. Cleon’s purpose is to welcome and greet us. Not to share information but to share his smile and connect, in person, as a human. A warm hello before we enter into this place.” I never again missed the chance to stop and say Hi to Cleon. He was every bit part of her healing process, up there with the Taxotere, Carboplatin, Herceptin, and other drugs.

There were so many different seasons we experienced with our journey. One time, while Tricia’s body was still recovering from all the damage it had incurred and she was struggling with her new image, the ongoing memory loss (chemo brain) and fluid retention, she shared there was a dark cloud hanging over her and when things didn’t go according to plan, the cloud would rain and she was struggling to dance. Now Tricia lives by her mantra: “Life isn’t about how to survive the storm, but how to dance in the rain.” I learned of my importance during the season changes. Awareness was the first thing I had to come to grips with. She basically had to club me senseless before I picked up on the cues! As I laid there in a mushy pulp, I realized things were changing. I learned to talk to her, share feelings, and talk about what was next.

The darkest of my feelings was the depression. It was an arctic cold that would rush through me when I allowed my thoughts to wonder near the forbidden room. Tricia was my best friend. All my life I have been fiercely independent, focused on getting ahead in life and making her and our children happy. The fear of not having her terrified me. It still does. Once you have been touched by “C” it is always there. She is the other side of me, and usually the better half. I was fighting for my life too! She was the only one who could sense something was abnormal within me, but really couldn’t help because she was fighting her own battles.

If it isn’t obvious yet, my wife and I are very opposite. She is the extrovert, I’m the introvert; she lives in the present and I’m way out there somewhere. She instantly sees the good in everyone and I have to get to know them. She is open and inviting, I’m reserved. She is in touch with her feelings and I avoid them. She has compassion and cares for others and I’m “well let’s not get too carried away here”. There are plenty more examples, believe me! Tricia’s life skills have given her an immense capacity to care for others. She is our family’s caregiver. When the tables were turned and I got the privilege to be her caregiver, I learned humility and compassion. I witnessed the outpouring from others and I saw how my wife was overwhelmed by it. It is not like her to be the center of attention, but cancer kind of forces that on you. Her journey remains focused on Kicking Butt. My role allowed me to experience what my wife is all about, a caring, feeling person. I was blessed with experiencing what is was to be the other side of me!

I heard Marcia Donziger, Founder of MyLifeLine.org mention that “cancer cures writers block.” That is so true! I had plenty to share and found relief and renewal through my journaling. So often our dialog about “C” is focused on the clinical side, but the human element is just as important. I used journaling to escape, share my fears, connect with others, inspire and be inspired, and to express my love for Tricia. I wrote once, “It is good to get your feelings out and, although I have never journaled before, I feel I’m now addicted to doing this. It actually lets me think through what I feel while I write. From a guy’s perspective “That’s a Good Thing”! Normally, when Tricia asks me what I feel, I look at her with that ‘Deer in the headlight look’ and think to myself, “it’s empty up there, how should I know?” Now I can actually talk to her about my feelings. Life is ironic isn’t it? “

I can proclaim that everything is good at the McEuens! “C” has changed our lives, in some ways I think for the better. It has been 4 years, we are in a very happy place. We live our lives to the fullest and we aren’t hearing any cannons in the distance.

I will end this with a journal entry my wife wrote that sums up the emotion within me.

“And now, to the one I am most thankful for, my Honey. Honey, I am so thankful that 23 years ago you called me up, as nervous as you were, and asked me out on a blind date. I am even more thankful that 7 months after that blind date, I became your wife, complete with 2, 3, and 4 year olds! As we added 2 more (and a few other blessings!) we became the most amazing, wonderful, crazy, loud, loving family that I could ever have imagined. Through all the ups and downs, the challenges, the triumphs, the good news and the bad, you have been my solid rock, my true hero, my soul mate, my life mate. Thank you for holding my hand (and probably my head here soon), rubbing my back, soothing my brow, supporting me, filling my heart with love, giving me the courage to face this battle head on, for researching to make sure not only you but all of us understand what I am facing, for asking questions when I go into my numb mode, for writing in the journal, for supporting our family even from El Paso or Denver or Michigan, for being the #1 person on my KICK BUTT team. I draw strength and courage and love from you each and every day and you seem to have an endless supply to give me. I absolutely adore you, cherish you, love you and I am so very, very, very thankful that God blessed me as your wife. I will love you always.

Your Lifemate”

A Cancer Caregiver’s Story

Rob is “ribboning” to show support for cancer fighters. Join him and share your #ribboning pictures on Facebook.

Today we welcome guest blogger, Rob Harris who has been a caregiver for his wife, a two-time cancer survivor, since 1990. In honor of national caregivers month we’ll be featuring a few posts about caregiving and caregiver stories.

When you think of the term “family caregiver,” what comes to mind?

Honestly, before becoming a caregiver myself, I would not have been able to answer that question. I knew my aunt cared for my grandmother until she succumbed to cancer. I also have a cousin who did the same for her father and uncle. I now know that it altered their lives dramatically, but at the time I had no idea. They never complained.

Since becoming a caregiver, I’ve come to understand what I didn’t know before. Caregivers are amazingly generous, kind, devoted, and, for the most part–silent.  Before I became a caregiver, I didn’t have any idea of the level of dedication and selflessness that exists within this population of individuals.

Until recently, caregivers and their thoughts, anxieties, obstacles and frustrations were not commonly discussed and the resources for them can still be limited. Walk into a Barnes & Noble bookstore. Ask where you can find books about caregiving. There are few, if any, on the shelves. Those that exist need to be ordered by the employee and shipped to the store. When I made that very inquiry not long ago, the clerk shared only four titles with me, and one of those was, We’re In This Together: A Caregiver’s Story, which happens to be the book I wrote.

I became a caregiver when I heard three words…”You have cancer.” They were not said to me, but they may as well have been. The two most prominent emotions radiating through my mind and body were mind-numbing FEAR and CONFUSION. The reason for the fear was obvious. The love of my life had just learned she had a life-threatening illness. My confusion came from not having any idea how to be an in-home caregiver. I had no knowledge, no experience, and nowhere to turn to learn how to provide caregiving help to my spouse. While the medical staff was focused on my spouse, as they should have been, in order to explain the medical journey she was about to undertake, I was left alone and ignored, with no idea what was to come next for me. Had I asked, I was sure at the time I would have been looked at with disdain. I hated that feeling and never wanted anyone to experience the same level of emotional paralysis I encountered, which is what drove me to write a book.

Surprisingly, the book was extremely easy to write. As I filled each page, the words flowed, as did the number of caregiver tips I’d developed from my personal experiences, 70 in all. We’re In This Together: A Caregiver’s Story became an Amazon.com number one bestseller in the Physician and Patient Caregiver category, and has been distributed throughout the world.

There are 65 million of us in the U.S. alone, with that number rising exponentially every day with the aging of America. So many are in need of assistance as they care for loved ones suffering from cancer, dementia, Alzheimer’s, Muscular Dystrophy, Post Traumatic Stress Disorder (PTSD), or any other illness or injury.

My life changed completely because I am a caregiver. It’s been the greatest experience in the world. My outlook on life has evolved in such an incredibly positive way, but no family caregiver should go through the caregiver journey alone, as I did. My mission is to be the person others can turn to when in need.

During our second cancer journey, my wife lost her life. Her heart stopped beating. I was there to witness it, as well as what happened next – she returned to me, and the rest of the world. She wasn’t ready to say goodbye. When my wife returned from the Intensive Care Unit, she turned to me and said, “We need to live every stinkin’ day as if it’s our last. I agreed, and an acronym was born. To this day, we ask each other, “What was your ESD (Every Stinkin’ Day) moment today?” Translation: “What made today special for you?” We do this every night before we go to bed.

With that, I thank you for allowing me to share my story on MyLifeLine.org. You have provided me with another ESD moment!  For that, I am grateful beyond words.

  • My website: www.RobCares.com offers resources, blogs, videos, CD’s with vital caregiver information provided throughout.
  • I provide a Caregiver Tip of the Day on my Facebook Fan Page along with several pieces of advice each day.
  • With over 10,000 followers, my Rob Cares Twitter Page is a meeting place for caregivers, patients, family, friends and members of the medical community to correspond with me and each other directly. I provide several tips each day on Twitter.

What’s Next? A Cancer Survivor’s Story

Today we welcome guest blogger, Rev. Fay Octavia Elliot, three-time breast cancer thriver from Boulder, CO. In honor of national caregivers month we’ll be featuring a few posts about caregiving and caregiver stories.

Nancy and Fay out for a walk.

Nancy (my primary caregiver during my cancer) and I went to University of Colorado’s Cancer Day program on Saturday. It was an extensive program with breakout sessions for specific cancers like breast cancer (my diagnosis is metastatic breast cancer), colon cancer and lung cancer. Then they had general sessions with topics that included nutrition, fertility and survivorship. The handouts for the general sessions are available at this link.

The presentation Coping as a Cancer Survivor was given by Marianne Pearson an oncological social worker in Fort Collins. She offered that “An individual is considered a cancer survivor from the time of diagnosis, through the balance of his or her life. Family members, friends, and caregivers are also impacted.” As she talked about the emotional issues one faces including: worry, feeling stress, depression, anxiety, anger, grief, sadness and being alone, I realized that now that I am in recovery so to speak, I have experienced them all at times. Less than nine months ago, I had a 3-6 month terminal prognosis, and now I am back among the living. Instead of planning my funeral I am trying to figure out how to plan my life.

When Nancy and I talked about the program afterwards, she felt they left out a big piece when they didn’t address her standpoint as a caregiver, going from being totally depended upon to having nothing to do for the person with cancer. Her life had been completely turned upside down by devoting her full time to caring for me and now suddenly, I don’t need her any more. She said it was very disorienting. A friend I talked with this morning said some caregivers would find it relieving, but obviously there is a continuum between the two poles. It is clear that both of us have to figure out where we go from here. Am I actually well enough to do any meaningful work? How long, how much? Who will want to risk hiring me if they know I still have what is considered a non-curable and terminal illness? How much am I still worrying about when it will come back or in what form? Does that worry ever go away no matter how long we are “survivors?” For Nancy, how does she move on? Will she find some kind of volunteer work to fill her time, make new friends, or find new outlets for her creativity like she has in her art classes?

In some sense for us both, it is a brave new world with completely different parameters than we faced before. It will be interesting to see where we go from here.

Read more about Fay’s journey on her MyLifeLine.org Site.  In the image below, Fay joins us in Ribboning (posing in the shape of a ribbon) to show her support of all people affected by cancer. You can too! Just strike the ribboning pose, snap a picture, make a donation, and post the picture to social media with the hashtag #ribboning.

Ribboning – It’s Tebowing With a Purpose

MyLifeLine.org Cancer Foundation, would like to start a nationwide show of support for cancer patients by having people “ribbon”.  It’s like Tebowing with a purpose.  We’re asking people who support cancer patients to do one or both of the following.

  1. Donate $1 to MyLifeLine.org Cancer Foundation by going here.
  2. You’ve given, now “Ribbon” and post it to your Facebook, Twitter or Instagram account with the hashtag #ribboning to celebrate and spread the word. Ribboning is standing in the shape of a ribbon with your feet wide and your arms circled over your head.

Please get ribboning! Our goal is to get pictures of at least 100 people ribboning with representation from all 50 states. Colorado and Florida are in, make sure your state shows support for people affected by cancer.

 

As always, if you’re a cancer patient or caregiver looking for your own place to write blog or journal, you can sign up for a free site at MyLifeLine.org.