Throughout this whole ordeal, my parents have given me a great deal of logistical support. They've handled the financial side of it, and the scheduling. My job has been to tolerate the treatments and try to get better. For that, I will always be grateful.
But let me tell you something about my mother. She complains that the people around her - her friends, her family, her co-workers - don't understand what something is like unless they are going through it themselves. She told me long stories of how she has to endure people asking stupid questions or making stupid offers. One of her favorite things to say was, "they all offer to help in any way they can but once I tell them how they can help that's not what they want to do." If she was in the same room as me, she was usually going on about the latest offense or hardship at the hands of oblivious well-wishers.
It didn't seem to occur to her that I might have other things on my mind. Perhaps even my own problems. She didn't have the slightest idea what it was like having brain cancer (though to be fair, I haven't the slightest idea what it's like to have a son with brain cancer). After about a week of recovery she was used to the idea and I was doing well, so she started acting like I was just fine. Occasionally I'd catch a brief glimpse of her usual self, of dismissing my concerns and troubles until she remembered, oh yeah, maybe my concerns and troubles are really freaking legitimate right now. By week three, I was basically a teenager again, in her eyes: expected to care for myself - which I could - but devoid of any of the wisdom or experience that allows me to make informed decisions. I started to remember why I'd moved out.
Starting at the time I was diagnosed, my father tried to give me some degree of agency, in that he at least asked for my go-ahead on all important (and unimportant) decisions relating to my own care. That was a valuable thing; cancer has a way of making one feel helpless and out of control. The thing is, neither he nor my mother really respected my decisions unless they were "correct." If I made the wrong call, they would ask the question again. And again, and again, until I made the "right" decision. Sometimes over silly things (while in the hospital I told my mother thrice that no, I would not like a blanket, only to catch her trying to sneak one on me while she thought I was asleep). Sometimes over more serious things, like if I wanted to go back on steroids or not (I did not, which was apparently incorrect). They would ask until I got angry. Then they would ask why I was so "grumpy."
Grumpy, as if my emotions were the result of some irrational mood, like I was a baby who had missed his nap, and that I would clearly see the wisdom in their decisions if they asked later when I was feeling better.
To those of you providing care for a cancer patient, I would suggest this: if there is a decision to be made, ask the patient. If the patient gives you an answer, respect it. If you piss off the patient by not respecting it, do not dismiss their legitimate anger. Otherwise, you have not given them agency. Rather you have taken it away and belittled them for ever thinking they had it in the first place.
As far as actual treatments went, there was not much to do during those first weeks of recovery. If I had any new or sudden symptoms we had to report them but otherwise, we were waiting. We were told the pathology - a dissection of the tumor and analysis of its cells - would take about two weeks. Until that was complete, we wouldn't know what I had other than a "glioma." Based on the MRI of my tumor, the oncologists we'd seen all believed it was a Grade 2 though they saw signs that it might be becoming a Grade 3 (not to be confused with "Stage 2" and "Stage 3"). Grade 2 is known as "low grade." Grades 3 and 4, "high grade." In a low grade brain cancer, life expectancy is measured in years. In a high grade, months. A cancer is graded by the fastest growing cells, so there is no such thing as a cancer that is "mostly Grade 2."
We were told that mine was "mostly Grade 2." A little after two weeks, after they'd delayed the diagnosis by a few days to make absolutely sure it was correct, my father spoke to Dr. Administrator, who said there was no reason to believe I wouldn't live "a long life." My mother wanted it in writing, as if that would somehow make a difference, or be defensible if it turned out she was wrong. A few days later, Dr. Administrator told my mother that my cancer was "mostly Grade 2." That means, "Grade 3." I don't know how the actual conversation went and would like to think Dr. Administrator meant, "what we have analyzed so far is Grade 2 and we've analyzed most of the tumor." I have no idea.
They completed the pathology the next day and faxed us the results. My father said it didn't contain any useful information or even a diagnosis, but it absolutely did. It was simply worded as a medical document rather than a, "Dear Patient" letter. It left me confused, as it determined I had two kinds of cancer (oligodendrocytoma and astrocytoma), but both were marked "level 2." I didn't know exactly what that meant but assumed it couldn't have meant Grade 2, as we'd been told it wasn't entirely Grade 2.
Except it was. The day after that we went to the city to speak with the oncologist and he explained the results to us. My cancer was primarily an astrocytoma but did contain some oligodendrocytoma cells, hence the term, "oligo-astrocytoma," and that they had found nothing but Grade 2 cells. Wonderful news (the oncologist looked at my mother a bit funny when she showed relief), but I concluded that Dr. Administrator really shouldn't have said anything. I think my mother is partially to blame for pushing her, though, and it's entirely possible she misinterpreted what was actually said.
When the two-week deadline came and went, my mother was livid. She wondered how they could do this, why they were dragging their feet, and insisted my father call every day to demand the results. Even after I explained to her that they were being very careful, making absolutely sure they didn't miss anything, it still wasn't good enough. She would have preferred the wrong answer, so long as she didn't have to wait any longer.
As Dr. Administrator had said, it wasn't for our convenience. It was brain surgery.
I tried not to think about the fact that they'd left some cancer cells in my brain. Those, they couldn't analyze. Some of them were some of the youngest, newest cells in the mass. Some of them could have been - could still be - Grade 3.
I had a number of treatment options available. The first was to do nothing. My oncologist - let's call him Dr. Cancer - recommended against that one and I agreed with his assessment, but it was very reassuring to know that it would not have been medically irresponsible merely to keep an eye on things. What Dr. Cancer recommended was, due to the location and transaxial nature of the cancer as well as my young age, we treat it like GBM4. That's a Grade 4 cancer, and possibly the most serious. Life expectancy is measured in weeks, so they throw everything they've got at it. That meant radiation therapy and chemotherapy.
Chemo tends not to be all that effective against astrocytoma, which lacks 1p/19q deletion, and I assume that makes a brain cancer more susceptible to the treatment. Therefore he recommended a low dose of chemo, 165mg daily, taken orally. Not to treat the cancer directly, he said, but because there was some evidence that even a small amount could boost the effectiveness of the radiation treatment. He stressed that there was not enough data on the method to make it an accepted treatment, and rather it was closer to a clinical trial, but he felt confident that it would yield positive results with only a small risk. One of the potential side-effects of chemotherapy is leukemia, though he reassured me that it was extremely rare and only associated with higher doses over much longer periods. I told him I would definitely go for the radiation but would need some time to think about the chemotherapy. It's a very scary word, after all. The next day we phoned him and let him know that I would take his full recommendation, both the radiation and the chemotherapy.
We would start on August 8th.