Sometimes life just piles up. I read that phrase on Facebook recently and it really struck a chord for me. Life has been piling up, especially these last few months.
In late May my dad was diagnosed with esophageal cancer. I’ve learned that writing that down is not quite as hard as saying it out loud. I’ve been thinking about writing a post about this and recently talked it over with my dad. He said it was my blog and that I should write what I want. I said it was his illness and I would abide by his wishes if he didn’t want me to write about it. He said it was fine to go ahead.
He had lost some weight and had been having some difficulty swallowing. He has been quite active and fit up to this point, doesn’t smoke and ate a healthy diet. He’d previously been diagnosed with prostate cancer but it seems like many men his age (76) were also living with that and he and the doctor had taken a watch and wait stance.
With this new diagnosis “watch and wait” wasn’t an option. At the time it seemed like we had to do too much waiting and things were at a standstill, but things were moving steadily forward. He needed to turn the weight loss around which meant adding rich, easy-to-swallow smoothies to his regular diet. He, my mom, and my sister met with an oncologist and got more information about his cancer. My parents attended a “Cancer Class” to learn about chemotherapy, they had an orientation at the Radiology Center in Rohnert Park and of course they shared the news with all of us.
Before treatment started he had a feeding tube and chemo port put in. The tumor was impeding his swallowing, and the radiation causes inflammation of the esophagus so the feeding tube allows the necessary nutrition, medications and hydration to be delivered. His radiation treatments were 5 days a week for 6 weeks up in Rohnert Park. My mom drove with my dad the 94-mile-round-trip for every one of those days.
The hope with the feeding tube was that it would be there only if he needed it. He did need it and sooner than we expected. He went from one day drinking smoothies to the next day being completely unable to swallow. Every bit of food, water and drugs are being given through the tube. At first my mom was doing it all with a large syringe but it was quickly apparent that they needed a pump which hooks up to the tube and propels the formula mechanically into the feeding tube. Still, it is a daunting task to stay ahead of the feedings and meds and make sure everything can be given through the tube either via the pump or a syringe.
He has just finished his third round of chemo. He goes into the chemo center and gets infused with a cocktail of drugs on Monday and after about 6 hours of that they hook him up to a small pump with another drug that he wears in a fanny pack for the next 5 days as it delivers its contents.
All of this clinical description of what is going on does not speak to any of the anxiety, fear, pain, misery, sadness, or nausea that he has and is experiencing. Nor does it address the worry, fear and sadness that we are going through. Each day and each week of treatment has had it’s own challenges and problems.
Medical appointments have to be kept, there was a clogged feeding tube, a broken food pump, and a chronic infection. And if dealing with cancer wasn’t challenging enough, there was a problem with the phone, the AC in the car went out, both the dog and the cat needed to see the vet, the dog needs walks and attention, mom needs support and meals. Life just piles up sometimes.
So, we’re coping. One brother installed grab bars after pain meds threw my dad off balance and he fell. My younger sister located a used recliner so dad has somewhere else to sit besides in bed. We talk with mom on the phone and visit as often as we can. We walk and wash the dog, we pick up meds and groceries, we ride along to appointments, we bring our love and humor and caring, cornbread and cookies and custard. We do what we can to make things easier for them.
As for the two of them – I see their courage and grace. And lots of patience. They are together nearly every moment of every day and both have to contend with the new roles this disease has given them. My dad is fully vulnerable and needs assistance, my mom has to take care of everything. My mother is living with cancer in a different way then my dad but it is every bit as life-consuming. I feel both relieved and guilty when, after visiting, I go home.
How we define good days has changed. But we look for small improvements and try to celebrate them. We’re doing the best we know how. I like to make my dad laugh (mom too) and to give them a break from each other. I sit and smooth lotion into my dads dry skin. Or just sit and be present with him. Sometimes I hold his hand. Because life just piles up and sometimes all you can do is sit and hang on.