Last year, early in the morning of April 27, 2017, I drove through an unexpected ice and snow storm to get John to the oncology appointment that had been scheduled earlier in the week. The two hour drive took nearly four because of the road conditions. John moaned from pain often during the trip, but never complained. Four days earlier, on Monday, I had taken him to the same facility to get treated at the Urgent Care Center. For at least the tenth time, he told a physician about the pain in his knee. For the first time in months, the physician looked at us and said, “If you say that you are having pain in your knee, then I’m going to look at your knee.” We both cried.

We had begged, sobbed, pleaded and tried to reason with many medical providers before this date, and the diagnosis that John had been determined (without any tests of his knee) was cervical stenosis of the neck – causing pain in his knee. He had a surgical consult scheduled for May 19th but the amount of pain that he was in sent me all over the state to get help for him. We went to the Urgent Care Center hoping to get an earlier consult appointment, schedule surgery, and get on with our lives with no pain. Instead, the doctor came into the exam room, showed us the x-ray of John’s knee and another x-ray of the same knee taken four months earlier and told us that he had cancer. Multiple Myeloma. We stared at him in shock. He gave John a prescription for pain meds and sent us home.

The next day, the same Urgent Care physician called us to tell us that the lab results had come in and that John DID NOT have multiple myeloma after all. I fell to my knees and cried tears of joy. The doctor said nothing. I knew that this wasn’t good, but to hear that he didn’t have multiple myeloma, in that moment, was something to celebrate. I denied that it could be a different cancer. This was only one of many mis-diagnoses that John would be given.

Three days later, with no more than 2 minutes of continous sleep at any given time due to his pain, John got back into the car and we headed back to the clinic to have our first appointment with the oncologist. I thought it was odd to meet with an oncologist when we had been told that he didn’t have multiple myeloma, and while in my heart I knew that it probably WAS cancer… I still hoped that the oncologist would tell us that the results were negative. I got John into the wheelchair. Just a week ago,  he had walked with a cane, and now he could no longer walk more than a few steps at a time. We wheeled up to the third floor and were shown to our examining room. I had packed clothes for three days, medications, and all of the supplies that I needed because I was determined to fight and make sure that John was admitted into the hospital to do something about the pain, even if they did not have a diagnosis.

As I sat next to him in the exam room, we were silent. There was nothing to say. I got out my tablet and began writing. He asked me what I was doing and I told him that I was writing….. something that I often did when I felt stressed or upset.

He never read the poem that I wrote while I sat next to him that day, our shoulders touching as we sat side by side waiting for our future to be told.

Waiting Room

The door clicks closed and it is quiet.

We sit on small chairs pushed tightly against each other.

We can hear each other breathing while we wait.

Humming ventilation masks the sounds in the hallway

But we strain our ears

To understand the giggling voices and hushed whispers.

Feet pass by in the hallway as we sit quietly and wait.

There is no need for words.

Our words cannot soothe

the eerie quiet that fills the room.

No clock to tick away the passage of time.

No need to know how long you have waited.

Finally we hear it.

We feel the presence on the other side of the door

We hear the papers shuffling for a moment

A quick knock on the door and she comes in

She knows our world will change forever

We do not

One last moment

before we face the monster she is now telling us about

We shall conquer it

Together

April 27, 2017

Shortly afterwards, John was given some pain meds to take the edge off of his pain and increase his number of uninterrupted minutes of sleep to 20 instead of 2. And our nightmare began. One year ago today.

If you, or someone you care about is dealing with grief, here are some tips for coping with grief from people who are dealing with it themselves!