I’m starting on my slate of medical appointments that I made a few weeks ago as I try to make up for years of neglect. Medicaid is wonderful. I don’t need to worry about any out of pocket expenses. For me that’s huge, it goes beyond financials to my anxiety issues. It’s one less thing to worry about. I enjoy taking care of my health. Doctor visits are intellectually stimulating. Filling out insurance forms is paralyzing. I wish everyone could experience health care like this.
Yesterday’s appointment was with a genetic counselor. If I write about this enough I’ll learn to spell counselor correctly. I always want to make the s a c. My gastroenterologist, I have no problem spelling that, suggested it because of the plethora of polyps that she discovered when she gave me a colonoscopy. This hinted at Lynch’s syndrome a genetic condition.
The Montefiore genetic counseling division is not on the campus a ten-minute walk from me but at the Hutch Campus on the other side of the Bronx. It takes me an hour and two buses to get there. To make things more fun the feels-like temperature was 20° when I left. That actually is fun for me. I got to get out my thermal socks and Nepalese hat. Google Maps worked as advertised and got me there right on time.
I had a suite number but just to make sure I looked at the building directory. The suite was on the third floor and genetics on the first. I decided to trust the information given me. The door to the suite says, “Obstetrics and Gynecology.” This was not encouraging. I went to reception and asked. I was in the right place. Most people that get genetics counseling are prospective and expecting mothers so that’s where they put it. I’m not sure what goes on at the first floor.
Then came what is for me the worst part, filling out the forms. I was asked a question that I have never been asked before though I expect half of My Gentle Readers have; “Date of last menstruation.” I wrote “Never.” I’m 61 and have not hit menarche yet. Why is menopause part of conversational English but menarche a technical term? I suspect that even some of My Highly Educated Gentle Readers didn’t know the term. I was amused by the question; probably more than you were amused by hearing about it.
Until I went in to see Katie, the genetic counselor I didn’t know why they didn’t just take my blood at the doctor’s office. It’s because they want to make sure people have a proper understanding of the procedure before they give consent. That’s nice as I got to ask questions like “why did I have to come here?” I discovered that you can get a degree in genetic counseling and that it started way back in the 70s. I had no idea. I figured I’d be talking to a doctor, maybe a nurse. But no, all Katie does in genetic counseling. I’m much more informed about genetics than the average lay person, but there is much that I didn’t know about how genetic testing is used. They are going to test around 30 genes for abnormalities. What these genes do is produced proteins that act as error corrections during gene replication when cells divide. This is very meta, they are checking for errors in genes that minimize errors in genes. It’s errors in the replication process that cause cells to become cancerous.
To help them decided if I should get the testing they asked for my family history. I wish I could have done a better job. There were some relatives that I was not sure what kind of cancer they had and I would not be shocked if I missed some cancers. As we were talking Katie wrote out a family tree and marked the cancers.
Then she went into how the tests would be used. Mainly it would be to find which tests needed to be given more often. For instance if I had a condition that predisposes to colon cancer I’d have more frequent colonoscopes. There are some conditions that might lead to me having breast exams. While breast cancers are rare in men if you carry one the BRCA defects it increases the incidence to 10%.
After talking to Katie for close to an hour I spoke to Dr. Goldwasser. One of the first thing she asked me was if I was Ashkenazi Jewish on both sides. I said yes and added, I bet you are too. It wasn’t just the name, she looked and spoke like a landsman. More than anything it was the smile as she asked me. She was asking one of her own. Ashkenazi Jews are a treasure trove of genetic disorders. All the millions of us are descended from about 350 people. There are large founder effects. We’ve been inbreeding for centuries.
Both Katie and Dr. Goldwasser volunteered that they love math. These were my people. I enjoyed spending time with them. The whole experience as stimulating.
Then came the big question, should I have the tests? I thought the process would be fun but that’s not a good enough reason to have expensive tests that I won’t be paying for. I said before that everyone should have no out of pocket medical expenses but part of making that practical is that people have to take responsibility and not get a procedure just because it might have a marginal benefit and is free. I asked what the benefits would be and was told that it would mainly be for my family. If I test positive then they should be tested too. That was enough for me. I opted in.
Then I was given the option of signing up for a research study to find easier ways of doing the testing. I would not receive any results about myself. Helping medical science is a second non-selfish benefit so of course I said yes. The only thing that meant for me was taking two extra vials of blood. There is no good reason for anyone to say no to that.
The only thing after that was going to the blood room where they drew what they needed. It took less than five minutes. I discovered I lost weight! There’s another benefit of my going for the counseling.
I told you the other day that Jane is in town. After the testing she picked me up and drove me to her house on City Island so I could help her with some things. The hospital is far from me but close to City Island. Then I acted as her geek-in-law. She needed an old computer backed up. The computer’s parts had been disconnected. The hardest part was finding a way to get the plugs to a power strip. I managed. I hooked up the monitor and mouse and was able to get the backup started on the portable hard drive she had. It came with the backup software. She bought it just for that purpose. She is not taking the computer with her. She moved to Oregon. I changed a lightbulb. That is not as simple as it sounds as she has 15-foot ceilings. I had to use the long folding ladder she has. Even then I had to climb higher than I usually feel comfortable doing. I did not have the reflexive feel I usually get. I wonder if that’s because of my meds. Last time I had to climb up there I was not a happy camper. This time it was nothing. The hard part was unfolding, folding, and moving the ladder, not climbing it. This was a first for me. I wonder if there any other gut level fears that will no longer affect me. There is a huge difference between overcoming a fear and not feeling the fear. This was not being brave. This took no effort. I wish the same thing would happen with my more complex anxieties.
I helped with a few other things then Jane drove me home. That helped. It’s a 20-minute drive but can take as long as two hours by bus.
Tonight I’m off to John Platt’s On Your Radar. My next medical appointment is Thursday morning at 7 AM. I’m having an MRI. Luckily that’s within walking distance. Not lucky, I wouldn’t have scheduled it then if it weren’t.
I’m very happy I’m taking care of my medical needs. So are my friends, Jane made a point of telling me. Allison made a point of telling me. People care, that feels good.
Wise Madness 