Waiting

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.

It’s hard to hide that kind of worry. It’s hard to slap a happy face on and go to work every day. Even if I wanted to, who can I tell? There is nothing to say yet. What sense does it make to gift those you love with that alarm bell when it is more than likely nothing?

And it is more than likely nothing. My frantic, comforting internet research tells me that with all the false positives and other things they could be seeing, especially in my denser-than-normal tissue, there is only a 10% chance that whatever they saw is cancer.

And it means nothing. Whatever research I do to make myself feel better can’t change whatever that follow-up test is going to say. What is, is already.

I tell myself I have no symptoms. I tell myself that it doesn’t run in my family, and that the one person in my family who got tested for the BRCA gene was negative.

I’m so tired and frustrated. It’s like a prizefight with my body that just won’t end. I’m only 42 and this might be my fourth round already. First meningitis, then uncontrolled diabetes, then kidney disease. My body and I keep fighting over my right to live. I have sent each condition packing time and time again, but when will it be over? I can handle the old stuff; I don’t know if I have the capacity to deal with something new.

But wait, maybe all that experience is what’s preparing me for this latest round. Is the survival rate of breast cancer worse than diabetes? Or meningitis? No. Really no on the second one. Cancer is scary, but if the worst is true, this is a fight I could win. I hope. I’ve beaten odds like that before. I could again if I have to.

But I don’t know if I do.

Guess I’ll just have to wait.

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Bracing for the Worst

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.

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Beyond Nuisance

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.

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Minimized

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.

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What Patients Want

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.

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A Pedestal is No Place for Children

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.

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The Magazine People Conundrum

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?

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It's Only FAERS

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.

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174 Units: The Story of a Pharmacy F-Up

Once upon a time, there was a woman whose large employer violated reasonable accommodation laws, which had a severely negative impact on her health. So, she left the large employer for a much smaller one. It wasn’t perfect, but it was much better. Then, after just a year, another large company came along and ate the smaller company. The woman was not encouraged by her first interactions with the large company, and she dreaded the change of health insurance – the second time in two years.

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