The first Keytruda infusion went okay with one exception. The IV nurse, Nancy, got a little nervous. After installing the IV, she quickly pulled it out, bandaged me, and then ran out of the room saying, “I’ll get someone who can do this better.”

Enter Brittany who mumbles, “She missed the vein.” Brittany doesn’t miss the vein and when she says “big pinch,” I feel nothing. I like Brittany. I ask if I can request her.

“Of course!”

Three weeks later, I request Brittany and who shows up, Nancy. 

“No, no, no, no, no, not you!” I sputter. “Don’t you remember? You had a hard time putting the IV in me and it was agreed I could request Brittany.”

I can tell Nancy doesn’t even remember me. “Brittany’s busy. She’s doing the schedule.”

“I’ll wait,” I say. Of course, I’m taking up a chair and they don’t like that. Nancy leaves again, and Brittany appears.

“I’m sorry, Brittany,” I say, “I know you’re very busy, but I appreciate you’re helping me.”

“I am busy!” she replies unhappily, and yet she places the IV painlessly. This time in my hand. Hand? Last time it went into my arm. Hmmm.

For the duration of the IV, my arm from hand to elbow feels like a frozen fish. This didn’t happen last time. I ask Nancy to check it. She touches it, says nothing, and then scurries out of the room. I figure all must be okay. The next thing I know, my face swells and the muscles in my back and across my chest Charley Horse. It’s painful. I call for help.

“Where’s the doctor?” I say.

“She says you should go to the hospital.”

“Why?” I ask. 

“You might be in cardiac arrest. Do you want us to call an ambulance or do you want to drive there?”

“I want you to stop the infusion and flush it out with saline.” I can’t believe I have to give obvious instructions to the three nurses now surrounding me. They do what I ask and in minutes I’m okay. No cardiac arrest. 

“The doctor will call you tomorrow,” I’m told.

The next day, there’s no call. So I call, and get a nurse. “What’s the problem?” 

“It should be in the notes.”

The nurse reads the notes and yes, my adverse reaction is recorded accurately. I add that my muscles still hurt, and I need to talk to the doctor to see what the plan is going forward.

Nancy calls and by the tone of her voice, I can tell she’s pissed. “Doctor says take two Tylenol.” 

“Tylenol? I need to talk to the doctor before I get another infusion.”

“Doctor is busy with patients today.”

“Tell the doctor that I can’t continue unless she calls me, today.”

Ten minutes later, the doctor calls.

“Ramona. You cannot raise your voice to my staff it upsets them. All of my IV nurses are very well trained and you upset them. If you don’t like the practice, you can go elsewhere.” I’m flabbergasted at being scolded as doctor rambles on.

I sense she’s not going to stop until I apologize, but I don’t know for what so I just start repeating I’m sorry. She shuts up. And then I ask, would you like to hear my side of the story?

I tell her what happened, remind her that I am the patient, and she tells me I now need a port because my veins are no good and a port would make things easier for her staff. 

“But I only have one more infusion before I get scanned to see if the Keytruda is even working. Isn’t it a bit early for a port? Doctor falls silent and then says, “I have patients waiting. I have to go.”

“Wait! I think I had an allergic reaction. What are we going to do about that?”

“Another infusion of the same thing.” 

I’m forced to seek a second opinion. “Yes, you had an allergic reaction. There are other immunotherapies we can use.” It’s that simple. But is it? Now I’m between two doctors. I don’t want to burn bridges. I like the facility I’m at. I want to keep all doors open. Is that madness? You tell me.

RAMONA JAN is the Founder and Director of Yarnslingers, a storytelling group that tells tales both fantastic and true. She is also the roving historian for Callicoon, NY and is often seen giving tours around town. You can email her at callicoonwalkingtours@gmail.com.