Some days the enormity of it all weighs heavier than others. This week has been a dead-man’s carry kind of week. It’s heavy and it’s not moving and there’s nothing to ease the burden of carrying it except getting to the point where I can’put it down. It’s going to be a long while before I can do that, unfortunately.
There are true benefits to finding cancer using early diagnostics like regular mammograms or colonoscopies. Tumors don’t get to 5 cm when you find them early. They don’t usually spread to lymph nodes or start invading other body tissues when you find them during a routine annual check. When a tumor gets to be 5 cm, everything about treating it gets really urgent.
Last fall’s MRI picked up small nodules in my lung. They ordered a CT to look at it more closely. There were conferences with the pulmonary people to see what they thought. In the end, both the oncologist and the surgeon decided to keep an eye on it because it was highly likely that node was reading high because I’d already had bronchitis for a month when I had the scans done. The new CT didn’t show a lot of change. The surgeon wasn’t concerned – everything else that had known cancer shrunk with the chemo. They still thought that was an infectious node. Okay, I can go along with that.
So when the radiation oncologist comes back and says she’s concerned about a lymph node in my armpit that seemed to grow instead of shrink, and the one under my right pectoral muscle that no one’s talked about since November, and she’s still worried about the nodes in my lung, I realize that I’d let my guard down for a bit.
If I want to stay true to what I said about doing this once and not dying in the next 5 years, I have to stay on top of all of my treatments and test results myself. I have to make sure that I am asking about the odd test results. Do you trust the pathology lab to have done the measurements correctly on the right piece of tissue? Do you think it grew? What does that mean? What are we doing to do about it? Yes, we. What about the Level 3 node? What are the risks in taking it out? What are the risks of leaving it in? Why didn’t we have this conversation before the surgery? Why weren’t you telling me the whole story? Where do we go from here?
It’s hard to trust people that aren’t forthright. It’s hard to trust professionals that hide behind jargon. What makes this really hard is that my treatment is completely dictated to me under the guise of “Standard of Care” and I have next to zero input in what steps are being taken or what is being done. I don’t like this. Maybe the people in my mother’s generation think this is okay and the way to go. I don’t. Am I smarter than my doctors? Not likely. This IS my life, though. I should get a say in how these decisions are made because their outcomes affect what’s left of my life. I don’t want permanent neuropathy or chemo brain or lymphedema.
I just got a letter in the mail from the insurance company telling me that my radiation therapy is approved. What. The. Hell? Why on Earth would it not be? Why did no one tell me they needed to do this and to expect to hear from my insurer? And why the hell are we doing treatment before the approval’s been given?
This whole organization needs to do and be better. It’s getting harder to keep up with all of this.