May 13, 2013
How a colon cancer caregiver learned to live in the moment
BY LeAnne Gibbs
Aside from the birth of our daughter, our life has been a flood of awful since my husband Francis was diagnosed with colon cancer.
Yet, under all this runs a strong current of beautiful moments, lessons and experiences.
On April 11, we met with an admissions specialist for hospice care. This was a big step because it felt like giving up.
This was an equally difficult and simple decision to make.
The hospice team has been tremendous at managing Francis' pain, and wonderful about addressing our whole family's needs. Their staff is easy to work with and incredibly comforting to Francis and to me.
At the same time, we realize that Francis isn't going to get any better now. We're trying to live the best life we can under the circumstances.
Hospice: A solution without regrets
Prior to Francis' admission to hospice, we had reached the limits of his primary care physician's expertise in pain management. This isn't a criticism; it's just a fact.
We also knew that the only option we had for emergency care was the emergency room at a local hospital. We both feared a trip there with every fiber of our beings.
Enrolling in hospice was the solution for both of these concerns, and we haven't regretted it since.
Easing Francis' pain
Our priority was getting Francis's pain addressed. I felt like Francis was slipping away because of his ever-present, intense and, at moments, agonizing pain.
I felt I was losing him because his only relief and escape was found in bed and in sleep. We spent much of our days in different rooms of the same house. When we were in the same room, he was usually asleep, which meant I was essentially alone.
The experienced hospice medical team nearly doubled the strength of Francis's pain patch (Fentanyl, if you're wondering).
They also doubled the dosage of a liquid morphine he'd been taking by mouth for any breakthrough pain - pain that breaks through the constant relief provided by the Fentanyl patch. We're now using a morphine delivered by syringe into his PICC line for this type of pain.
Within a day or two of these initial changes, Francis was awake more often and able to move about the house and even help with housework. It's amazing how mundane everyday tasks like washing dishes and doing laundry are the first things that he does when he feels like being up. I suppose it makes him feel productive and, more importantly, normal.
"Afraid that the normal moment was fleeting"
I was ecstatic to have Francis back, but I also was struggling.
I had already gotten a glimpse of what I believe is the worst part of watching Francis go through his cancer's progression. I had witnessed a pain so intense that it made the strongest man I know break down in tears. I had heard him begging me to make the pain stop. I had seen his clinched teeth, balled fists and writhing body.
Every moment that he seemed to be more normal was a moment I was struggling to enjoy because I was afraid that the normal moment was fleeting. I feared that I'd soon be whisked back to that horrible place of his agony.
Thanks to the ugliness of the experience with uncontrolled pain, I've learned a beautiful lesson - one I hope to never take for granted.
Seeing the special in anything
For the first time, I really understand what it means to live in the moment. It means that when Francis has a good moment, I can't let my fear rob me of the immediate moment of joy. Living in the moment has nothing to do with skydiving, whitewater rafting or rock climbing - all the activities I once thought allowed people to live in the moment.
Living in the moment isn't about seeking anything special. It's about seeing the special in anything.
It's about keeping my mind open to seeing the beauty in the yuck.
I'm not perfect at doing this and I'm really not even that good at it, but I finally get it. Now that I get it, I can do my best to enjoy the here-and-now for what it is, and keep my fear of what may be lurking in the next moment from stealing the joy of this one.
LeAnne and Francis Gibbs live with their two young children in Tallahassee, Florida. They share their journey with Francis' aggressive form of stage IV colon cancer on their blog, Our "Semi" Colon Life.
One of best lessons that we've gotten in the face of Francis' colon cancer diagnosis has been about living in the moment.