Sunday, January 31, 2010

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.

Wednesday, January 20, 2010

Update --

It's been some time since I've made an entry, but the good news is there's not much new. We continue to heal slowly, watch our progress, and pray for the best.

We met with the radiation oncologist just before Christmas to go over the results of the first follow-up PET scan. This doctor echoed the first in saying the results were good, but this doctor was considerably more conservative. She was guardedly optimistic.....not ready to get excited, but content to be positive. It was actually an emotional let down from what we had experienced with the lead doctor of the team.

The reality is, radiation was the major player in my treatment, and I think the radiation doctor was feeling more pressure for the end results. She said it's good, but she's not ready to say anymore. I have a CT scan the end of March. Until then, we wait. Meanwhile, Christmas was a joyful celebration in lots of wonderful ways.

My neck and throat are still sore and occasionally I lose my voice. Not good in my line of work. The doctor said the throat is still red, healing fine, with still a ways to go.

I've maintained weight, which means I'm still down about 25 pounds. I began working with a personal trainer in late November. It was the same one Faith has worked with for nearly two years. She knows her stuff. No one told us to to this, or even to start exercising, but it's been the right move. I had very little strength, but she assures me I'm getting stronger. Why the exercise? I know a lot of cancer patients have to endure more than one round of treatments. Should I need to go through this again, I need all the strength I can muster. Fear is a tremendous motivator.

I start each day with a 700 calorie shake and try to eat often enough to compensate for not eating much at any given time. Food is okay.....not bad....but not really good. It's certainly not what I remember.

I developed some numbness, tingling, and muscle shocks that we think are side effects of chemo. It began with my fingers losing circulation and going numb, like the numbness you get from being out in the cold.

Next, I began to experience electric-like shocks in my thighs during my workouts. It feels like the electrical shock treatment doctors use to stimulate muscles. I've had these shock episodes last up to 90 minutes.

And lately, my legs tingle from just below my knees to my feet. They don't go numb, they just tingle like your foot's asleep.

And lastly, I've definitely had some hearing loss....maybe more than just some. I made an appointment with an audiologist, but was told by the radiation doctor to wait. She said it's still too early to know if it's permanent hearing loss. In the meantime, I just say "huh" a lot, cup my ear, or nod when I don't have clue what you have just said.

Now, having said all that, I'm doing great! I'm active, I'm at work, I do anything and everything I want, I feel good, I'm trim, and I'm building strength. I'm excited by the progress and only need an occasional reminder that slow progress is to be expected. Faith is very good at providing that timely little reminder.

I shared all this other stuff only so others might understand, and that those going through anything similar might know what they could encounter. It in no way reflects my overall wellness. I'm ecstatic to be where I am!

I still need to share the aloneness part of this journey, but that's for another day.

Thank you, all of you, for your love, prayers, and support.