doctor

“You have cancer” (a Thanksgiving-ish story)

A few people I’ve talked to recently who have (or had) cancer told me they can clearly remember the moment when their doctor told them that they had cancer.

In my case I do remember the conversation with the doctor, but that was more of a formality. When I picked up the phone to talk to her, I already had a pad of paper and a pencil in hand, and I was ready to write down the details she was going to tell me. Because in my case I was pretty certain that I had cancer when I saw the ultrasound results a few days earlier.

A possible result could be catastrophic

I was talking to a doctor yesterday about Pericarditis and he said that one possible result could be catastrophic. I was well aware of that possibility, but I thought it was an unusual word for a doctor to use.

That being said, it does sound more powerful than you could die. A lot of people say, “You could die doing <fill in the blank>,” so maybe that phrase has lost some power, where “catastrophic” isn’t used that often to talk about one’s health.

Fifty Shades of Mast Cell Activation Disease (MCAD/MCAS)

Notes from September 24, 2016:

Doctor: I’d like to collect a bone marrow sample ...

*Al runs out of the hospital in a hospital gown, screaming like a little girl*


(later, after they caught me)

Doctor: The next time you break out in a rash, hives, or blisters, I want you to have those biopsied.

Me: Is there going to be any part of our relationship that doesn’t involve a lot of pain on my part?

Doc: Yes, pee in this cup, and we’ll look at it under a fluorescent light to see if you have the same disease that King George III had.

Me: The crazy one?

Doc: Yes.

Me: Cool.

Getting Thyrogen is hard (if not impossible)

As I’ve learned over the last several months, getting Thyrogen for thyroid cancer treatment can be extremely hard, if not impossible or incredibly expensive. These nine pages of notes to my doctor, my insurance company (Blue Cross/Blue Shield), specialty pharmacies like AllianceRx (Walgreens), Accredo, CVS specialty pharmacy, and the Thyrogen manufacturer, over a period of five weeks demonstrates how hard it is to get Thyrogen when you need it.

After going through all of this, my best suggestion is that if you’re having a hard time getting Thyrogen for your thyroid cancer treatment, call the people at thyrogen.com (ThyrogenOne). Because a lot of patients have a hard time getting Thyrogen, they seem to understand the process better than anyone, including my doctor’s office and my insurance company.

The cancer shirt

You can tell sometimes when doctors have something they don’t want to tell you. One of my doctors is an older “manly man” kind of guy, and while we’ve had some interesting conversations, they’ve never been about clothes. But the last time I saw him he walked in and said, “That’s an interesting shirt. What does it say on it? Where did you get it?” The conversation felt weird, and then I realized he was stalling. Finally he said, “Well, the biopsy shows that you have cancer.”

So now, ever time I put that shirt on, like today, I think of that conversation.

Doctor: I’ve only seen that once before in my life

A funny thing about mast cell disease is when a 60+ year old doctor who is considered one of the best in his profession says to you, “I’ve only seen that once before in my life.” With MCAS, you get used to statements like that.

(This happened in 2016, but I was reminded of it again today.)

Doctor struggling to give me a little bad news

Yesterday one of my doctors was struggling to give me a little bit of bad news, fumbling a little over his words and giving me a very lengthy explanation. After a little while I told him listen, I’ve been unconscious seven times, I’ve had three fake heart attacks (allergic angina), and I was once told that I had a 10% chance of dying during an operation. What you’re telling me right now, it’s okay, it’s not that big of a deal. He calmed down a little after that.

I think they made a movie about this

After my surgery last week I went to see the doctor on Wednesday, and to my surprise he handed me a piece of paper that says that the biopsy on the body stuff he removed shows that I have cancer. But then he quickly added that he thinks it’s a mistake. He did two surgeries that day, me and another person, and he said that he knew going in that the other person had cancer, but the lab test results show that I have cancer and the other person did not test positive. So he hopes the results got reversed somehow.

To get to the truthiness of the matter they took a DNA sample from me and they’re going to compare that to the cancerous material that’s still in the lab. (I didn’t think to ask how long they keep that stuff laying around.) He said it could take ten days before they know the result. I think they’ve made movies about this, but I don’t think I’ll be racking up any huge credit card bills or anything like that. ;)