No News is Good News

I continue with regular meetings k(every two months) with my doctors and continue to be told we are doing good. I just finished with the lead physician on our team and he's pleased, but tells me to be vigilant in monitoring my body and let him know immediately of any changes. I assured him I was intently intune with my physical being. Even things that are meaningless (like aches and pains) get extra attention. Not a pimple, blemish, cold sore, etc. goes unnoticed.

It's been 18 months since we concluded treatment. They won't say it's gone or if it's in remission or if we're good to go. No, that would be too much. My radiation oncologist did say she has never lost anyone who has made it this far. I concluded that was her indirect way of telling me we were good, even though they won't sign off till we are five years out. I told her I had no intention of scfrewing up her track record!

Looking back, it seems like all this was in a different life. Faith and I were talking about it the other night and agreed that it all seems so long, long ago. For me, much of it is a fog. I have always had a difficlut time remembering the details of bad things. Sometimes that's a good thing and sometimes it causes problems. In this case, I have Faith to provide all the details just in case something I've forgotten is important.

We continue to give thanks for our blessings and are always amazed at the concern expressed, still today, about our health. Life is good as we dance in a lot less rain.

Things are good!

It's been some time since I've added to this journal. One reason is that there has not been much to add. But the big reason is there are really no issues.......and that is good.

It's been just over a year since I completed my treatment. Some days it seems like yesterday, but most days it seems like another lifetime. It was a year ago that I was trying to recover, sitting for days in a chair in the bedroom. I just celebrated my birthday yesterday and it was truly wonderful to be another year older. To mark the day, I went to the gym and ran two miles. Couldn't do that six months ago.

I had chest x-rays and a thyroid test to mark the year since treatment ended. Both turned out good. The spot in my chest was there before and the thyroid is not showing any damage from the radiation. So now my visits with the doctors are every two months instead of every six weeks. It's only two weeks difference, but it sure sounds good.

My instructions now are to do a physical exam of my neck.....every day.....for any changes, lumps, or bumps. Liken it to what women are supposed to do every month to get an early detection of breast cancer. The direction to do it 'daily' was surprising. I read that to mean even though things are good, I'm apparently not out of the woods. It's certainly not a problem. I have been very in tune with my body the past 18 months.

I continue to gain strength and I'm in the gym on a regular basis. Many of the things I experienced, things like tingles, numbness, and joint aches, have gradually gone away. I think they were all side effects of the treatment and it simply took a long time to recover, a lot longer that I ever imagined.

I eat whatever I want and most foods taste more or less like they should. I still can't trust my sense of taste. When something tastes bad I have to ask Faith if it really is. I'm maintaining my weight and may have actually gained two or three pounds. My mouth remains dry so I'm never to far from water. I notice it mostly at night and usually need a swallow every couple of hours. I must not completely wake up, because it doesn't seem to result in a lack of rest. My throat is still slightly raw but not really sore. I think it is from the scar tissue. I have one saliva gland that's wacko. It's in my bottom lip and it routinely swells up, then I inadvertenly bite it, then it swells some more. It usually goes down in a day or so just to return the following week. The doctor says if it stays wacko he'll remove it. I'm not there yet.

So, you see.....things are good! Next week is the annual Cowboys Against Cancer banquet. I'm going to share a top ten list. It's "you know you're a cancer survivor when" kind of thing. Maybe I'll post it here later. My next visit with the doctor is the week after Christmas............so I'm good to go for the holidays.

Bands be gone!

Yesterday I had another CT Scan in Salt Lake City. It was the three month follow up from the scan we had last March.

I did the scan in the morning and met with the doctor in the afternoon. I was ushered into a room where I was first checked out by a young doctor doing her residency. She said Dr. Ying was reviewing my scan and would be in briefly.

As five minutes turned into fifteen, my mind raced through numerous scenarios. Obviously, the scan was not good and it was taking her a long time to work through all the stuff. Then I thought, no, she probably got held up with another patient and she's just running behind. But, no, I've never waited this long before. But if it were not good, surely she would be here by now. Something else must be causing the delay. No, the doctor in residency said she was looking at my scan.....so what's taking so long.

As fifteen minutes turned into thirty, my naturally nervous energy was about to redline. That's when the door opened and she said the scan was good.

Now most people would be relieved and maybe even cheer. But I have learned that the word good is subjective and requires further explanation. I said, " What do you mean by good?" My 'good' was the lump from the previous scan was gone and there were no new reasons for alarm.
She said, "The lump is still there, but it hasn't changed." Then she added, to my relief, "The fact that it hasn't changed in three months means it's not cancer. If it were cancer, it would have grown. We all have lumps!"

She went on to say she was not concerned about it and that we could wait six months for the next scan and next visit (actually, next November). She preceded to examine my neck and throat and concluded by saying I look good.....I look healthy.

Now that's 'good'............because I feel good and my body tells me I'm healthy.

My annual check up is in August. Yes, it will have been a year since I finished by treatment. They'll do a thyroid test and chest xrays along with a look see by the other doctor.

So, in my humble opinion, those still wearing the blue rubber wristbands can replace them with something more stylish. Thank you for your months of visual support. I may not have always mentioned it, but I always saw your wristband, and it was always uplifiting to me. It was a silent showing of support, support that overwhelmed me and was not completely understandable, but most appreciated. It was support that strengthened me and kept me focused. And thanks to everyone who has kept me in their prayers and often expressed concern. You have been the best medicine.

I'm taking my band off today. I'm sure I will feel a little strange without it, but I'm sure I can get use to it. Faith and I will plan a band burying celebration......a ceremonial good riddance. We'll keep you posted.

NO NEWS IS GOOD NEWS

Well, a lot has happened since my last entry, and I've been remiss for not providing an update. I am going to give a detailed report, so if you're pressed for time, scroll to the bottom for the, well, the bottom line.

The tumor board at the Huntsman Center was supposed to meet on Friday, April 2nd, to review my CT scan and make a recommendation concerning the small lump revealed. That was Good Friday and I was disappointed, but not surprised, to learn they did not meet. They meet once a week. I mentally prepared for another week of wonder.

The tumor board did meet on the following Friday, but I didn't get their input until Monday. The group decision was to do a biopsy......find out what is there. The decision made for a mixed emotion day......for both of us....all day. I wasn't excited about another biopsy....that's where we started nearly a year ago. It seemed like a huge step backward. Conversely, I did want to know, and sooner than later. We were out of town and the first mutually agreeable date for the procedure was the following Monday, April 19th. Another week of wonder, but this time it was wondering if this test was going to work. The biopsy last year was inconclusive and we had a large, visible lump to work with. This time the lump was small and not visible. I was concerned about not getting a sample from the right spot and getting a false negative.

We went to the University of Utah Hospital midday Monday. We were led into a high tech room, nothing like the doctor's office where a similar procedure had been done nearly a year earlier. Last year seems like a different life.....it was. That was B. C. ----before cancer.

I laid on a slightly inclined, hard table/bed. A technician used an ultra-sound to look at (in) my neck. She asked if I could feel the lump. No. "Is it small?" Yes. Then I asked my burning question. "How do you know you're getting tissue from this small lump?" She explained the ultra-sound would show the needle and they would watch the monitor to guide the needle tip into the lump. She then explained that they would take a sample, run across the hall and ask the pathologist if they had enough cells, and then do it again if necessary. I asked if that happened often. To my delight, she said it usually takes three sticks and some times as many as seven! While I pondered my plight, she explained how she was going to bring the lump up on the screen and then the doctor would come in to preform the procedure.

She couldn't find it. I said I thought it was higher on my neck. Nothing. Do I dare think it?

The doctor came in from where he'd been studying my CT scan. He looked, but couldn't find it. He went back to the CT scan to make sure he was looking in the right place. I think I held my breath. I know both Faith and I were thinking, hoping, do we dare hope, the same thing. But neither of us, alone now in the room, uttered a word.

He looked again. I must have breathed. Finally he said, "I can't stick what I can't see".



It had been three weeks since the scan. The doctor explained that lymph nodes swell up normally as our bodies first line of defense.....to a lot of bad things. It could be a dog or cat scratch, an allergy, an infection of some sort, etc. Whatever was there then, was gone now.

You don't realize how much this stuff weighs on you until it's lifted. Alone again in the room, Faith and I hugged, cried, said a prayer of thanks to the Lord, and shared our unbelieving emotions of the past fifteen minutes.

It was an incredibly short trip home to Green River. I'm sure I had a smile on my face the entire way because I know I had a heart full of joy.

It's been nine days..........and I haven't been shaken awake and told this was all just a dream. So now I'm sharing it with you. Are we done? No. We see the lead doctor on the team in three weeks and we have another scan five weeks after that. Meanwhile, life is good, life is great, and we continue to heal. I'm starting to think it's time to burn the blue bands. Do I dare think it?

Update --

Just a short post to bring you up to date. I am feeling fine and doing better. My saliva is better and things taste better, just not right. I have no real complaints. My throat is still a little raw and I'm sure the dry air doesn't help.

I had a CT Scan on Monday and met with the radiation oncologist, Dr. Ying, on Tuesday. The report was good, for the most part. She examined my neck, inside and out, and said it looked good. The raw throat is to be expected....it takes a long time to heal. The tingling in my legs is a not-so-common side effect of the neck radiation, but should be temporary. The scan showed nothing in my lungs, which is a common place for neck cancers to go. There was one node on the left side of my neck that was slightly enlarged. That's the part I really didn't want to hear. Everything else looked good.

The Scan cannot tell us why the node is enlarged, only that it is. We have three choices the way I understand it. We can wait and watch
, we can do a biopsy, or we can remove it. Dr. Ying is taking all the information to what they call the "Tumor Board" on Friday and then she is supposed to have a recommendation for me. My guess is that they will say 'wait and watch'.
I think I'm okay with that. The node is so small, I'm not confident a biopsy attempt would reach the right spot. Besides, a year ago when I first had a biopsy to find out what the original lump was, it came back inconclusive. And before surgery, I think a Pet Scan is in order to see if this lump is 'hot'. That's the term they use when they find an area of rapidly growing cells, indicative of cancer. The Pet Scan that I had three months ago did not show a hot spot with this node.

I did experience some allergy symptoms last week in Las Vegas and that could be what's causing the node enlargement. I hope that's not wishful thinking.

Regardless, I meet with the surgical oncologist is six weeks (a routine visit) and will have another CT Scan the end of June.

Next: Docs recommendation

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.

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.