There’s no doubt our lives are really ugly right now. This life isn’t what we intended to live. The last year, apart from Riley’s birth, has been a flood of awful.
Ironically, under all this yuck runs a strong current of truly beautiful moments, experiences, and lessons. One of these beautiful lessons has been about living in the moment.
On April 11, we met with an admissions specialist for Big Bend Hospice. This was a big step for us because it felt like giving up. I assure you that this was an equally difficult and simple decision to make.
Big Bend Hospice has been tremendous at managing Francis’s pain, and wonderful about addressing the needs of the whole family. Their staff is easy to work with and incredibly comforting to Francis and to me. At the same time, we also realize that Francis isn’t getting any better now. We are trying to be intentional about living the best life we can under these circumstances.
Prior to Francis’s (our family’s) admission to hospice, we had reached the limits of Francis’s primary care physician’s expertise in pain management. This isn’t a criticism, it’s just a fact. His primary care doctor was amazing at tracking down the right information and unique delivery methods since a traditional medication delivery method is unworkable with the drainage opening in Francis’s stomach. Most pill form medications and many liquid forms require an extended period of time in your system to work appropriately, and with Francis what goes in immediately comes out.
We also knew that the only option we had for emergency care was the emergency room at Tallahassee Memorial Hospital. We both feared a trip to TMH with every fiber of our beings.
The solution to both of these concerns was enrolling in hospice, and we haven’t regretted it since.
Our priority was getting Francis’s pain addressed. I felt like Francis was slipping away because of the 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. For much of the day we were separated from each other in different rooms of the same house, and when we were in the same room he was so often asleep that I was essentially alone.
Thanks to the experienced hospice medical team, Francis’s pain patch (Fentanyl if you’re wondering) was nearly doubled in strength. He had also been taking a liquid morphine by mouth that was doubled in dosage 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 and able to move about the house and even help with housework. As an aside, it’s amazing how the mundane everyday tasks like washing dishes and doing laundry are the first things that he does when he feels like being up. I suppose that’s because it makes him feel productive and, more importantly, normal.
I was ecstatic to have him back, but I was also struggling.
You see, I had gotten a glimpse of what I believe is the worst part of watching Francis go through the progression of his cancer. I had witnessed a pain so intense to him 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 I never take for granted.
For the first time, I truly 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 white-knuckled activities I once mistakenly 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 that fear of what may be lurking in the next moment from stealing the joy of this one.