This quote has been running through my mind since Eli had a bad pain episode a week ago starting about 3 am. He had texted me asking for water for his 3 am meds. I had been woken up by our 4 year old climbing into bed with Adam and me about 2:30 am, so when I got Eli’s text, I was already awake. When I went to refill his water bottle, I noticed he was in quite a bit of pain, in spite of the pain pump and having pushed the button.
After getting him a couple oral meds, I decided to call the on call hospice number. I explained to the nurse what was going on and she got to work getting the on call doctor paged to authorize an increase in the pain pump basal rate. Meanwhile, I sat with Eli, reading a book to him between oral doses of meds every 30 minutes, trying to manage the pain.
From the time that we were told that Eli’s cancer was no longer curable, they assured us that there were medications to make him comfortable and that he wouldn’t need to suffer. We admitted him to hospice because that’s exactly what hospice is supposed to do, keep him comfortable. However, as I sat with him hour after hour, waiting for their help, I felt powerless to stop his suffering.
This cancer fight is no longer to the death–the cancer will die with Eli, no chance for it to win. This fight is to the pain. Each thing it does to my son is another stab to my mother’s heart. It takes and takes and takes.
Swallowing food? Gone.
Laying down? Painful.
School? No more.
Growing up? Gone.
A future without cancer? Not in this life.
It turns out that the number they put into their system for the doctor on call was one digit off. It took three hours of excruciating pain to get a nurse here with the doctor’s authorization to up his pain pump dose. Not acceptable. A plan was devised to enable me to adjust the meds under telephone supervision, in the event of another situation, but now they want to take away that safety net.
Not only am I heartbroken and feeling helpless against the onslaught of this disease, but my brief ability to have greater control over Eli’s comfort is being threatened. It feels like we’re fighting cancer and the system that is supposed to bring him comfort, all at the same time.
Now, if only we didn’t have to deal with plumbing leaks in the laundry room and kitchen, too, not to mention the vehicles that need fixing. We finally got the broken thermostat replaced, but it seems that houses and cars are a source of never ending repairs.
To the pain.