Call it a headline-induced flashback.

This week’s announcement of a $512 million expansion by Maine Medical Center is big news in the hospital industry.

In fact, as reported by Staff Writer Joe Lawlor in Thursday’s Portland Press Herald, the project is one of the largest hospital expansions in the country – aimed not so much at adding more beds as at improving the “patient experience” by greatly expanding the number of private rooms for sick people who could use some time to themselves.

To which I say bravo. Not too long ago, I was one of those people.

It was June of 2015. For the third time in five months, I was an inpatient at Maine Med for treatment of Stage 4 melanoma.

Things were not going well.

Multiple surgeries and radiation procedures, along with three rounds of immunotherapy infusions, had failed to stop the cancer.

Now here I was, stuck in a semi-private room in Maine Med’s Richards Tower, hoping for the best but preparing for the worst while the nurses and technicians came and went with their needles, their pills and their much-needed words of encouragement.

The night before, they’d wheeled in my roommate just hours after he’d undergone major surgery that would forever change his life – and not for the better.

He was a great guy. We introduced ourselves and chatted that morning, comparing notes as patients do in such moments of uncertainty tinged with pain and fear.

Just after lunch, his family and friends began arriving. Wonderful people. All wanting to see him. All crowded into his side of the room to the point where the curtain separating us was pressed right up to the side of my bed.

“Good for him,” I thought amid the din of the half-dozen, maybe more, well-wishers. “That guy needs all the support he can get.”

Then my doctor appeared.

The look on his face, the way he sat on the other side of my bed, told me this would be no routine chat. Bad, I knew deep down, was about to become worse.

I remember hearing “your last CT scan” and “new spots on the liver” and “too numerous to count.”

I remember something about “we’re not giving up yet” and “there’s still the nivo.” He meant nivolumab, the one remaining immunotherapy drug in our quiver. My last hope.

But this much I remember with crystal clarity:

“Be honest with me,” I told him. “If the nivo doesn’t work …”

“Four months?” he said. “Maybe the end of the year?”

He could not have been more compassionate. He repeated his pep talk, patted me on the leg and told me to get some rest.

And then, with more patients to see, more tightropes to walk, he was gone.

I lay there, eyes closed, while the noise a few feet away grew louder … and louder … and louder …

I wanted to scream. I wanted to throw something. I wanted to push the red button and demand that the nurse break up the party and order everyone out.

But I couldn’t do that. This was my problem, not theirs.

Nor could I drown out my thoughts with music on my headphones or cover my ears with a couple of pillows.

So I got up and fled.

Wheeling my IV pole as it drip-dripped fluid into my right arm, I turned right at the doorway and made a beeline for the TV lounge a short distance down the bustling hallway.

The TV blared an afternoon game show. Two women on the couch bickered over whether to change the channel. Nearby, a man and his kids sat around a table gleefully working on a crossword puzzle.

I spotted an empty seat in the corner near the window. I sat down, stared out over Portland and, without warning, began to cry.

Furiously wiping away the tears, praying that no one could see me, I autodialed my wife on my cellphone.

Voicemail. She was at work in a meeting.

I turned back toward the lounge to see my surgeon walk by. He smiled and waved. I flashed what I hoped passed for a smile and waved back.

I called my daughter, a social worker. Thank God she answered.

I told her in a hushed voice what had happened, and she listened long and hard. Then, as she sensed the strain in my voice subsiding, she gently talked me back to my room.

My wife, alerted by my message, arrived minutes later. We held each other tight and wept, even as my roommate’s last visitors quietly tiptoed past the foot of my bed.

I looked at the clock. My son and his wife were due to arrive in 15 minutes.

“I have some difficult news I need to share with them,” I told the nurse, who already knew. “Is there someplace we can go?”

“Yes … well, sort of,” she said.

It was no bigger than a large closet, a “private space” that on this day was so full of extra chairs and other stored items that you could barely step inside, let alone sit down.

My son and daughter-in-law arrived. I told them we needed to talk. I saw the worried looks on their faces as we frantically pulled the extra furniture out of the tiny room until there was enough space to sit.

Then we talked … and hugged … and cried … and talked some more. It felt claustrophobic – four people huddled in this cramped little cubicle weighing the “what is” against the frightening array of “what ifs.”

Turns out my “what if” hasn’t been so scary after all. The nivolumab has worked, my cancer is in partial remission, and my days as an inpatient at Maine Med, God willing, are behind me.

At the same time, I feel nothing short of blessed to have received the level of care I did. In far too many parts of the world, it’s not a matter of how private your hospital bed is, it’s whether you have access to a hospital bed at all.

Still, to those who would look to this week’s news and grumble that private hospital rooms are a luxury, or that they’re trying to turn Maine Med into some sort of five-star hotel, I would say this:

Never in my life have I needed privacy more than I did that day.

And I suspect I’m not alone.

 

Copy the Story Link