Alone

Numb today. On purpose. Stayed up way too late.

Go to the radiology office.

Last week I found out that they need me to come in for additional, more detailed imaging of my left breast. It is hard to keep myself from considering worst case scenarios. Well, the worst case scenario. I can’t even type it. Cancer.

It’s a cruel, horrible process, the waiting. You get a call that sets off a claxon of an alarm bell in your head, then they tell you next to nothing. It forces you into a state of hyper anxiety that can’t be eased until you know one way or the other, which could be a day, a week, a month, depending on your schedule and theirs. For me it is going to be eight days. A very long and distracted eight days during which I have to pretend -- even to myself – that everything is normal.

Today, all I want to do is curl up with a book and pretend the world doesn’t exist.

I had two routine procedures last week, a mammogram and an ultrasound of my kidneys and bladder. On Saturday, I picked up several neglected voicemail messages. The radiology center had called asking that I call them about one of the procedures I’d had. With my history, I couldn’t help but worry. These are the times you really hope it’s about billing.

Ever get the feeling your physical self is operating on a different level than your intellectual self? I swear my veins know when I am getting blood drawn. They like to play hide and seek on those days or roley poley. Or they just go on vacation.

I’m dragging and I can’t figure out why. My blood sugars aren’t right, and I feel like I have overcommitted on some projects. But this is different, not something that can be addressed with more sleep or caffeine. I know this because I am getting 8-9 hours every night and I have tried caffeine, which I don’t really drink unless I need it to not fall asleep at my desk. No, this is a long-lasting fuzzyheadedness that is affecting my productivity. I probably would have spent last weekend in a Game of Thrones watchathon anyway, but I shouldn’t have felt like I needed to. And on Monday, I was tired enough to trip over a free weight right in front of me, and I think I sprained my pinky toe. Even if it’s not sprained, it did bleed all over my off-white carpet.

A few weeks ago, I marveled at a panel of healthcare professionals and policy experts who seemed to never have talked to a patient before. I wanted to stand up and say, “We’re right here! TALK TO US.”

Recently, I spoke with someone who pointed out that it’s not that simple. He told me a story about a woman who had migraines – some of the worst pain a person can experience. She minimized how difficult her condition was to the point that her teenaged son, someone who lived in the same house with her, didn’t understand how her condition impacted her life. He thought they were just headaches and didn’t understand why she couldn’t just get over it.

I recently attended a conference that I really enjoyed. But one thing that struck me as a little discordant was that panelists and speakers seemed completely baffled about what patients want. The way they spoke about us reminded me of how biologists speak about a newly discovered species or astronomers talk about a newly discovered comet or asteroid. They are curious about what they will learn from it, but it is a complete unknown.

I have avoided addressing this subject for a long time because I was afraid of offending. But lately I have been watching a channel that runs the St. Jude’s commercial on every break, and all I feel is the overwhelming urge to change the channel. So I’ll just say it. No matter how bad the disease, no matter how tragic the circumstances, young patients aren’t heroes.

I went on a long car trip this weekend, four plus hours each way. I enjoyed the drive. My brain goes into driving mode on those trips – half focused on the road and half free to wander. I get a lot of thinking done that way. This weekend I was thinking about an event I was going to miss and how not upset I was about it. One of my closest friends was hosting a board game night with several other friends I’d met many times over the last decade or so. Thinking back to the last time we had all gathered, I remember thinking I was happy to be there for my friend’s event, but could have done without all the rest. But my friends obviously enjoyed their friends’ company, so why couldn’t I?

Some of you may be familiar with the difficulties I’ve been having with my very expensive, cutting-edge Class III medical device. In a nutshell, I discovered the first month that the cutting-edge tech, which was supposed to act as an intuitive pancreas, did not work for me. I called the manufacturer and they had no solution for me. I asked to talk to someone who knew more about how the algorithm worked, an engineer, but of course, there was no one like that available. All they had was the customer service reps who knew less than I did. I had to turn that part of it off.