I didn’t expect my cancer diagnosis to require this much strategic planning.
It’s not just how to squeeze chemotherapy and 100 oncology appointments between shuttling kids to school, loads of laundry, oh and working 35 hours a week.
That’s actually the relatively easy part to figure out.
It’s making the official “plan of care” and making sure I’ve heard every option that pulls in the strategy.
If you have early stage cancer, this probably isn’t the same. Stages one and two (and maybe even three?), there’s typically a protocol.
As in: If you do this specific treatment then chances are, you’ll be clear after a specific amount of time.
For stage four… not so much.
First, we do first line treatment. Which, apparently, step one is seeing “does first line treatment even work when the cancer is this advanced”.
If it does, great.
If it works particularly well, like it did in my case. Then it really becomes anything goes.
Cancer research is severely underfunded, and the majority of research dollars seem to be put towards prevention, and the earlier stages.
I understand, you can have a big impact if people don’t ever even get the cancer.
It’s much easier to cure something when the variables are fewer.
And, the trial timelines are often longer than stage 4 patients are given to live.
It’s a tricky situation.
But it also sucks having your doctor look you in the eye and say “we don’t know, there’s no data for this situation” because no one is studying what’s happening to you.
So then, it’s second opinions, and third opinions and second opinions on your second opinions.
It’s becoming an at-home researcher, looking up which hospitals offer which types of treatments and learning lots of medical terms that you never thought you’d need to know.
It’s reading active studies they’re doing on your cancer and other cancers to try and understand enough about the disease to make decisions that genuinely should require a PHD.
It’s your oncologists asking questions like “what do you think?” and “what ideas do you have” because plan of care has become a conversation, a strategic planning session where you are an active participant, and not just the one receiving the roadmap to success that’s been followed by thousands of patients before you.
All this is okay. I’m figuring it out. I have world class oncologists and surgeons weighing in on ideas and concepts that can continue to save my life.
I am so grateful for each one of them, who have taken the time to draw pictures and charts, to talk to me in ways that I can understand, about a disease they’ve spent decades studying, while I’m doing my best to get up to speed in a 30 minute appointment.
Stopping at just one doctor and one doctor’s opinion, isn’t enough when you’re stage 4. You have to get as many opinions as possible so you can weigh them against each other. There are treatments available at one hospital, that another hospital system isn’t doing, so they aren’t mentioning.
There are surgeons who can do complex surgeries that others can’t do, so the others don’t mention it as something that might work for you.
You read up on doctors, and study treatments and have conversations as if you’re an expert.
And you find the best plan of care for you.
It’s strategic, it’s difficult, and it’s all done while getting regular chemo, and having brain fog and your body and mind is not at all what it once was, but you have hope that it will be again.
Welcome to having stage 4 cancer.
Bring your A-Game.