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.
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. ;)
Because of the MCAS I usually see a series of specialists and only see my primary care physician (PCP) once every year or two, but I had to go her office a couple of days ago. One of the benefits of going there is that she has this terrific view of the Rocky Mountains.
Doctor: You have more bacteria DNA in your body than your own DNA.
Me: My body??? (spoken in high-pitched voice)
Doctor: Yes. No. I mean not just you, everyone.
Me: Oh, good. I thought you were trying to tell me something.
If you have Mast Cell Activation Disease (MCAD, also known as Mast Cell Activation Syndrome, MCAS) and need to have a surgery, here is the advice I received from the doctor/specialist who is treating me for MCAD/MCAS: “For patients such as yourself, I suggest continuing on antihistamines and taking prednisone (40 mg) the day before, the morning of, and soon after a procedure. Generally, the anesthesiologists and surgeons are fine with this.”
Dr. Jill Carnahan of Louisville, Colorado, has a good article on mast cell activation syndrome (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?
Me: The crazy one?
It seems like there still aren’t many women in computer programming, but twelve out of my last eighteen doctors have been women, so that’s cool.
In retrospect it’s humbling to see that doctors spent about half a million dollars over the last 5-7 years to figure out my illness. If more doctors knew about mast cell disease the total cost could have probably been 1/10th of that.
This makes me look forward to the day when doctors have better software, and are willing to use it. (Every time I watch an episode of House I think, “Use a computer!”)
Doctor: Do you know why your triglycerides are high?
Me: The election?
Me: David Bowie’s death?
Me: *sigh* The cookies?