I hate to bring up the past, but here’s a story. Three weeks ago, before I knew my brother was not a match, before I underwent the ATG treatment, I met with the bone marrow  transplant team. Standard procedure. Thought being, if my brother is a match we have all the semantics out of the way and can proceed quickly to transplant, if he’s not, well, he’ s not and will move on.

Enter my case manager, Sam(not the real name, I’m not here to embarrass anybody). For the remainder of this post, Sam’s words will be italicized.

Things started off well.

So, you have been diagnosed with leukemia? (rhetorical question)

“I haven’t,” I said, “aplastic anemia.”

Of course. (stated as if I had just attempted to inform her the world was round)

When will you undergo a bone marrow biopsy? Your marrow needs to be analyzed.

That procedure had already happened, I explain, had happened the week prior, and was followed by a bone marrow analysis—that’s how we reached my diagnosis, aplastic anemia, that’s why I’m sitting here.

Crossed it off the list. Guess we won’t need to schedule that then.

Are you currently employed? Yup. Do you have health insurance? Yup. And your carrier is? Empire.

Sam proceeds to verify my address, asks if I live alone.

We’re rolling now.

Have you been seen at the clinic? Yup, they sent me to you.

Now, when did you start to feel tired? “Two or three months ago.” Was there bruising? “Yup.” Have you been tested for PNH? “Yup, negative.”(please just read my chart its all there, I know it is the receptionist told me when I asked if there was any additional paperwork to fill out and she said “No, we have your information on file, it’s all here from the clinic”)

Are you on any medications? “I am.”

I give her the names.

Now, just to clarify you were admitted to the hospital?

My father is starting to look around for the hidden television cameras.

Everyone in the waiting room–my case manager conducted my interval history in a half-full waiting room—senses our growing agitation.

How old are you Matthew?(in a very sweet tone, I think she senses it too)

“I’m 23 years old.”

Oh, so young, bless you(sweeter tone, followed by sympathetic frown and head bow).

We all know my age is in my chart lady.

Do you have a sibling?

This woman can’t be serious. I play along.

“Yes, I have an older brother.”

He’s going to need to be tested to see if he’s a match?

We are here because my brother’s sample has been collected, with optimistic hope that when the results came back in a few days he would be a match—all this had happened already.

Sam follows with a long synopsis of why my brother is the best option. We heard this already, save me. She starts talking genetics, and HLA typing, I’m ignoring her, she carries on anyway. She jots notes, continues to ramble on about things we have already discussed.. transplant is the only cure.. things that are in that chart. We’re pushing 20 minutes now, 20 minutes without new info, without revelation, without progress. Did I mention we are still in the waiting room?

Meanwhile my father is a shade of red I’ve never seen, there is a vein that is starting to protrude from the right side of his head, just in front of the temple. This is interesting.

Quick side note, William P. Sheehan, if you don’t know is my father. He is tall. He is mild-mannered and with no known history of  public displays of emotion.No prior incidence of yelling, shouting, crying or screaming. My mother can testify on his behalf. Bill Sheehan does not like to yell. Not at a game, not on a train, not in a plane, Sam. Never.

He speaks. ” I don’t understand isn’t this all in the chart?”(with obvious annoyance—I’m intrigued, this is a first)

Sam rolls her eyes–just a bit, just enough—and looks back down at her pad. She mutters something about vital information.

Bad move. William Patrick Sheehan loses it. Bananas. he saying words—yelling words—about the same damn thing over and over. He’s going through gritted teeth now. We’re in the waiting, people are scared. I’m scared. It’s all too much, the particular’s are hazy, kind of like when they ask the survivor of train crash what was running through your mind and they say it was just a blur–that’s me. He’s saying this is ridiculous, over and over grunting at this lady, demanding to know if she took  even a minute to look at my case before I walked in that door, before she wasted our damn time. Oh Lord, his arms are flailing.

I black out, not really but pretty much. The rest of the day was a wash, no one involved will be the same.

Ten days later I’m in the car with my parents, on the way home from most recent hospital stay where I underwent the first phase of immunosuppressive treatment, after learning my brother was not a match. I look down at my phone, a new voice mail. I check my message, my first since being released from the the hospital. When you spend a week in a hospital you take pleasure in the little things.

Hi Matt, this is Sam, the transplant case manager, just wanted to verify that you and a parent will be joining us for the July 27th Transplant Seminar beginning at 8am. Please call me back at….

Delete. I smirk.

“Hey Dad, that was the transplant case manager she just wanted to verify if we will be attending the “Preparing for Transplant” Seminar on the 27th.“


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