Cancer consult number 542, or something like that. This morning I had my appointment with my radiation oncologist. I like her a lot, she is very matter of fact. She was positive but not afraid to be realistic. And the plan has changed. Again.
We are still pursuing a combination of radiation and chemotherapy, but Dr. Radiation feels that Proton Therapy is the way to go. My main tumor is right in the middle of my chest, right up against my lungs and my heart. Radiation is bad for you. Radiation is really bad for your heart and lungs, and increases your risk of heart disease and other cancers later in life (and apparently I need to be real careful about falling chest first onto anything in the future, because it’s also not great for your bones.) And since I am still “young” the doctor is looking out 30 or 40 years, not just getting me a few good retirement years. Proton therapy, as I understand it, goes into your body, but doesn’t pass all the way through it and it doesn’t have as wide a spread. So the radiation is concentrated more on the tumor and less on the important stuff.
But hey, guess what? The Proton Therapy center is at another hospital! It’s also the only one in like, an 800 mile radius. It won’t be that big of a deal most days (radiation is 5 days a week,) except on the days I have chemo. Up until today the plan was that I would have chemo at the same place as radiation for logistical ease. So now chemo day will be at two different hospitals, 10 miles apart. The other downside is that Proton Therapy has a much more fixed schedule. I was hoping to get everything done as early in the morning as possible and then be able to go about my day. But apparently, the proton machine has to be adjusted depending on where in the body it is aimed at, so all the brain people go, and the thoracic people go and so on. So I will basically be at the whim of the machine. Maybe I’ll get lucky and I can still go in the morning.
And if you need a tour of any of the local hospitals, I can probably help you out at this point.
Oh, and guess what else? Insurance doesn’t usually cover Proton Therapy, like basically never. The hospital “strongly believes” in it though and is already going to bat to file an appeal with my insurance. It can take months. So the hospital has a plan where you can pay a set price up font and if insurance decides to pony up, you get your money back. The price is high. I one hundred percent know and appreciate how fortunate I am that we can afford it (I’m still grateful/angry that I had to pay for the original CT scan out of pocket.)
At this point though, I’m just ready to start (que Arcade Fire.) I feel like it’s just one appointment after another, but nothing is getting fixed, just more and more info is getting thrown my way. Mentally, I think I am ready to start doing something, even though I know “doing something” will mean I start actually feeling like I have cancer. Monday I have my radiation “fitting” and get my new tattoos and I still think I have a few pre-chemo appointments in the next couple of weeks. Dr. Radiation thinks we will probably start the first week of June.
The attached photo is from the Journal of Thoracic Oncology, not of me or by me (it’s one of the one’s Dr. Radiation showed me this morning) The left is “traditional” radiation and how it spreads in the body, the right is Proton radiation, you can see how much smaller its range is. (https://www.jto.org/article/S1556-0864(15)32828-8/fulltext)
