Going it Alone --

I've been meaning to address "aloneness" for months and every time I got close, some more timely topic would squeeze it out. Finally, here goes.

There's two sides to this topic. First, let me acknowledge that I have never been so un-alone in all my life. My family has been with me every step like I've never experienced before. Friends of a social relationship became foundational support. Community members, unnumbered, held me up in their thoughts and prayers. Never a day did I fight this battle alone. I was never alone physically or emotionally.

What I mean by "aloneness" is the decision challenges, of which there are many. Critical decisions have to be made from day one. And the early decisions have huge impacts down the road.

When we first met with the surgical oncologist (the lead physician of our medical team), he told us that there would be a cadre of people involved with my cancer treatment, but he also said I would be the head of the team......that I would call the shots. (It should be noted in looking back, several critical decisions had already been made that set the course of this journey.) My non-verbal reaction to "You will call the shots" was sure! I know the hospital routine. They tell you what to do, when to do it, and how often to do it. They talk about patients' rights, but often it feels like your rights are checked at the door.

So I was told, I heard, I was unconvinced, and I was wrong. Unlike any medical issue I have been associated with, when it comes to cancer you make the decisions. Maybe it's because of the complexity.....a myriad of cancers and even more variations of treatment....maybe it's the lack of overwhelming success....maybe it's because nobody knows enough to tell you....your guess is better than mine. Regardless, the bottom line is the cancer patient calls the shots!

Surgery or no surgery? In my case, that one was easy, so easy it didn't seem like a decision....it was that obvious. Feeding tube or no feeding tube? That was entirely our call! We were given all kinds of information, but not so much as a recommendation one way or the other. Faith and I (mostly Faith) made the decision, not so much a medical decision, but a decision based on our oft used decision-making model. We weighed the upside potential against the downside risks. Right up to the day before it was put in, I wasn't sure. That day I called a tonsil cancer patient I had never met to seek her advice. The decision was affirmed and we later knew it was the right decision. Without the tube, I would surely have been hospitalized.

The decision to remove the tube was entirely ours. In fact, we made the decision, made the appointment, and had no doctor approval......or were we asked for one. In earlier discussions it had been made clear it was up to us.

I had lots of medicines prescribed to combat sickness from chemo. It as up to me to decide which to take and when to take them.

Decisions on food, eating, exercise, and overall physical health were made by us. How to care for burned skin, dry mouth, and sore throat were left to us....mostly by trial and error.

The doctor was correct....I made the decisions. Consequently, it is so important to read as much as you can, discern what is accurate, and act accordingly. No one suggested I seek a physical trainer. I would recommend that to anyone. No one told me when to go back to work. I would suggest later than you think.

There an more examples, but the message is the same. In the cancer world, you call more shots than expected. Arm yourself with all the information available. It's a lonesome road, even though there may be lots of support. But only you can make the call. The buck stops with the patient.

Knowing now what I didn't know then leads me to wonder what I NEED to know NOW that I don't. I do know that my future well-being depends on the decisions I make today. And I know that I'm expected to make the call.

I hope this helps others. It was hard for me to comprehend and harder to explain. So despite the tremendous support I've received, there's a solo, lonesome path through the landmines of cancer treatment.