Patient #1: Exploring options for Plan B
OK, so Plan A didn't have the super, dramatic, life-saving cure we all hoped it would. Disappointing? Of course. End of the world? Definitely not. So after a long weekend of thinking, where does that leave me?
Patient #1: Exploring options for Plan B
OK, so Plan A didn’t have the super, dramatic, life-saving cure we all hoped it would. Disappointing? Of course. End of the world? Definitely not. So after a long weekend of thinking, where does that leave me?
First, it leaves us thinking about Plan B. The most likely path we will go down now is another clinical trial that involves the PD-1 Antibody. Once we confirm, and I understand a little better what I am getting into, I will give more details on both the trial and PD-1. The suggested trial divides up subjects into two-thirds getting PD-1 antibodies, and one-third getting traditional chemotherapy.
This isn’t my first choice for treatment, but then again, my first choice didn’t work so well. I continue to have reservations about chemotherapy. The more I read and understand, the worse it sounds as anyone’s treatment, much less my next best option. We summarily dismissed the chemotherapy route after the first oncologist gave it to us in September. The thinking then – and now – is there is something better. The more I know, the stronger I feel that chemotherapy is NOT the way to go for anyone who wants a sustainable response. More to come on Plan B and chemo in future posts as we decide our course of action.
There are some positive things about Plan A flopping (as a reminder, we don’t know it failed yet; I still believe there will be some sort of partial response when we get the scans re-done at the end of March). I received more suggestions and helpful emails than I know what to do with. I spent most of Sunday afternoon wading through notes, emails, links, etc… that have been sent to me, trying to make sense out of different options and what to focus on next. Thank you to everyone who is trying to help out.
One very well-intentioned email from a friend that came through with an attached experimental therapy paper, but it was something in the text of the email that caught my eye: “At some point, it's probably better to let TJ enjoy his remaining time with his family.” Reading that was startling, even though I completely understand the author’s sentiment. One day, I may need to make the tough call of continuing rigorous treatments vs. maximizing time with Jen, Josie, and Tommy. We are certainly not there (or even close) yet, but the thought had already entered my head, even before the email. Seeing that phrase as part of a treatment option made the thoughts I had more tangible and real.
So what does one do when faced with the first wave of realistically considering your own mortality? In reality, this probably isn’t my first go-around thinking through this; the last six months have offered plenty of chances to contemplate the future. Even the first melanoma occurrence in 2000 gave me enough of a scare to kick-start some deep thinking. I could respond the way 25-year-old T.J. did, but wouldn’t recommend that to anyone – excessive late nights and living for the moment, consequences be damned, wasn’t exactly the way to appreciate being a cancer survivor or make life healthier.
I could feel sorry for myself, or get mad that God decided this was my fate. I mean, I’m no angel, but “what did I do to deserve this” would be a plausible response. However, that would be as unhelpful as my 2000 reaction had been selfish. Similarly, getting mad and lashing out at anyone or anything is also an understandable, and an equally unhealthy reaction. All of these would give temporary relief from the stress of dealing with a complicated and difficult situation, but what is to gain other than a very short-term reprieve from reality? It would be like scratching poison ivy.
Al Davis once said, “A great leader doesn’t treat problems as special. He treats them as normal.” I try to emulate that and handle major things as if they were just another item on a checklist, and deal with the emotions and implications as best I can beforehand or afterward. It probably sounds a little callous, but if any of you have ever made a decision in the heat of the moment, you know your decision-making abilities are altered. There is a reason people “sleep on it”; most of us just aren’t good at handling stressful situations and then making sound, well-thought-out choices.
So I continue to research the different medical possibilities, and look into other possibilities to the trial suggested. Nutritional, herbal, and alternative treatments are all very much on the table; my gut feeling is that a mixture of Western medicine and non-traditional treatments will be what ultimately gets me to the finish line. Meanwhile, Jen and the kids and I still do the normal things we would if cancer were not omnipresent in our lives – like getting ready for Josie’s big third birthday party this weekend. Even if I dealt with more morbid thoughts than the average father the week of their child’s birthday, very little changes. The party will be fun, we will have a good time as a family, and Josie will celebrate like any other little kid. All the while, Daddy will be deciding how to best position myself to be around for her 13th, 23rd, and 33rd birthday parties.