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.