One thing in that realm that bothers me a lot is the way things were handled by the medical team involved with my dad's case - and that branches off into lots of other questions linked to the health care system in general. I know there are not going to be answers to these questions, but I feel like I have to get them off my chest anyway. So I'm going to start with the unresolved issues that relate to the oncologist...
As I've stated, I really liked the oncologist on Dad's case at first; like a lot of other people, I sometimes look for "signs" along the way to reassure myself that I am on the right track when I have to make a tough decision. I thought we were doing the right thing by choosing that doctor to head up Dad's case, in part because I thought maybe it was a "sign" that he had gone to medical school where I live but he had done his undergrad work at the college that was my daughter's first pick. (How freaking ridiculous is that? That's like putting your life in someone's hands because they have the same favorite color as you!) I got a "good vibe" from the guy the first time I met him; I felt like he was down-to-earth, unlike the asshole neurosurgeon who had been assigned to Dad's case, and I felt like he understood not just that we viewed my dad's case as a unique one but also why we did - and I thought that meant that he would see it in the same way we did (translation: I thought he would do whatever it took to help my dad, just as I was ready to do).
At our first appointment with the oncologist, I asked him directly if he would bring up the subject of hospice with us when it was time. Like pretty much everyone who walks through the door of an oncologist's office for the first time, I had only limited knowledge about cancer in general, and obviously I didn't know much about brain cancer or the treatment for that specifically. It's terrifying to be in a position to have to put such blind faith in someone you don't know at all, but you have to trust someone - and so that's what we did.
I will never forget the scene in the awful little room off to the side of the hospital waiting room where, hours after Dad's surgery had been completed, the neurosurgeon imparted the most devastating news possible to my family and me about Dad's diagnosis and his prognosis. As soon as he finished talking, I bombarded him with questions that I thought would influence what he had just said; as things were spinning completely out of control, I was desperate for control of something. When I got to the end of my list of questions, I pledged out loud that we would fight the cancer tooth and nail, because that's what I wanted and that's what I thought dad did too.
Fast-forward a dozen years later, and it was my dad who was critically ill, and it was us who were being asked if heroic measures should be taken. We all thought back to the story that had been told many times about Dad's proclamation on my niece's behalf when she was so sick, and we knew that Dad wanted to fight. Never for a minute in the days after he was diagnosed did I consider that he might want to forego treatment, even knowing that the treatment would not be easy.
And so at our first appointment with the oncologist, after he vowed that he would give us his honest assessment of when he thought we should move towards comfort care instead of moving along a restorative path, we discussed an aggressive course of action to treat GBM. When we left there that day, I felt good about what we had talked about; I felt like we had a good set of facts and a plan of attack.
This is just how new I was to that world, though: when the doctor explained what the "standard of treatment" was for Dad's type of cancer, what I really heard was "standard treatment, " and I got hung up on the word "standard." In my mind, that meant "average," and, as the doctor talked and talked, I just kept thinking, "HELL NO, we don't want the 'standard' treatment - we want the EXCEPTIONAL one!"
It wasn't until a few weeks later when we were at the Brain Tumor Clinic at Duke that I realized that the term was actually "standard of treatment" and that it referred to the treatment that was generally accepted and used for a specific diagnosis.
Since then, I've become familiar with stories about people who have been diagnosed with GBM and who have fared well going the route of the standard of treatment, which typically has very few side effects. I've heard stories about other people with the same diagnosis who have chosen different types of treatments, too. But I didn't know any of that back then.
The only choices we were given that day in the oncologist's office were the standard of treatment (an oral chemo called Temodar + radiation) or the cutting-edge version (Temodar + radiation AND Avastin, which works by cutting off the blood supply to the tumor site) that was going on as part of a clinical trial. That was it. As I've learned since then, there are other treatment options available for GBM, and I think those alternatives at least deserved a conversation. Unlike some other cancers that are diagnosed much more often, only modest advancements in the treatment of GBM have been made over the last 30 years, and so far a successful "cocktail" of chemo or other treatment regiments that positively affect survival rates have not been identified. As a result, there isn't a cookie-cutter approach to treating the disease, which means there are possible variances in treatment strategies.
Maybe the oncologist thought we had time to try alternate treatments if necessary in the future, if the first protocol wasn't successful or if it was and then a relapse occurred (which almost always is the case with GBM). Maybe he felt that things like vaccines and other immuno-therapeutic treatments wouldn't be as effective for Dad for some reason. I am just left to wonder why other possible treatment options weren't discussed at all, one of many questions for which I know there is no answer.