Hadn't Seen That Before!

Never a good thing when your doctor tells you that.

This morning he'd just finished telling me that how disappointed he was that the radiation didn't work. That sadly the Cancer hospital had no other options to offer me; their research hadn't come up with anything that looked like it was viable for reducing my bone pain. I was being discharged as a patient there and would be sent back to the Toronto Western team for the "balance of my care".

Palliative speak. I've more or less become used to it, but today it hit especially hard. Although I know full well that the radiation didn't work, there was a part of me that was hoping that news would come today that that a different plan of attack might well offer me some relief.

We reviewed the bone scan results one last time. From here on in, it really doesn't matter where the tumours are and where they spread to - the plan of methodically irradiating them one by one for pain relief has been shot to hell. I'm not entirely sure if I care to have any more bone scans. I know where the tumours are, it's an all too familiar intense burn that feels like hot pokers have replaced my bones. And it's getting harder to bear every day, and I'll recognize the feeling when it appears elsewhere.

As we were wrapping up I was reminded that I was to show him the radiation burns. And that's when the look of astonishment crossed his face. "Sandy, I've not seen that before. It's got to be from the radiation given the location, but that shouldn't have happened". I guess nobody else has the fun of having baby giraffe legs.

The ride home with the Cancer Society volunteer driver and other patients was excruciating. I can say I'm pretty sure that I've never felt lonelier or more alone than I have today. I needed someone to hold me and tell me that it's all going to be okay. Even though we'd both know it isn't. Someone to hold my hand, wipe away my tears as I allow myself to cry out the pain, frustration and fear.

I'm not afraid of dying, I'm afraid of much more of this ahead of me. Knowing that this only gets worse.

From time to time it happens that someone will ask me about what symptoms led to my diagnosis. Once in a while, the person will have themselves convinced that they too must have Erdheim-Chester because they have leg pain and/or cardiac issues (and this happened again this week). Or I'm told that that's exactly what their Aunt Sally had, but she's all better now. Sometimes they ask for my doctor's name so they can speak with them to get confirmation that they too have ECD.

I try to be polite and suggest that if they're feeling pain or discomfort they most certainly should have it checked out. But I'm frustrated when others seem to be hoping that they've found the answer in an ECD diagnosis.

On the inside, I feel like screaming that suggesting that they have a very rare illness such as ECD is the very last thing they might want to think about. Pray, hope, wish (whatever works for them) that if it is something serious - that's it's something far more common. An illness that comes with a successful treatment protocol (or a protocol period), drug funding, answers, survival rates that are at least a touch more predictable.

I'm not being selfish wanting to have ECD all to myself, or dismissing the pain of others. It's me praying that others don't have to go through something like this where you just don't know what's going to hit next.

Trust me on this. You don't want to be the patient who's been told "We haven't seen that before". It's not a good place to be.

Just so you all know I've not completely lost my sense of humour today, I'll share an addendum to last night's post about the SAP setting on the TV. In trying to distract myself from the pain last night I was checking out what other buttons on my TV remote did. Lo and behold, there was one that took the picture from being all stretched out and distorted to being normal proportions again! The "format" button saved the day, I had on this one too been blaming the antenna. The setting had been on Zoom, when 4:3 makes people normally proportioned again...

You have permission to laugh at me on this one too, but for those friends who worked with me for many years in the tech arena (where I was either programming myself, or leading a team of techies) you're allowed to call me, laugh as hard as you like without saying a word and then hang up. I'll be laughing too.