News of Clem

Pam's New Blog

2010-08-31T07:49:00.001-04:00

Pam's going to take off on her own with a blog, so you won't have to keep up with who's writing in what color.

Steady as she goes

2010-01-27T19:28:00.002-05:00

It's been a long while since I posted, but that's because there's been no news to report. No news is GOOD news! But today the news was even better. Last week I got my first 3-month CEA test. I had it done in Mexico, so it took a week to get the results in. Pam was on pins and needles for the whole week, and was very worked up as we went in to the doctor's office to get the result. When we got there, the nurse didn't give us the result, but instead referred us in to see the doctor. Uh oh. The last time that happened the news wasn't good at all! He said "I have some good news and some bad news. Which do you want first?"

Pam was in agony. She dreaded the bad news with all her heart. This is the doctor, remember, who first diagnosed me. He delivered that worst of all possible news in just the same manner. I jumped in and said "Give us the good news, doc." The good news was that the CEA test result was 2.43! (Remember that less than 5 is normal for former cancer patients, and less than three is normal for everyone else.) Woo hoo! After that, what possible news could be bad? "The bill!" Pam didn't think his joke was very funny, but the good news was too good to let it get her down.

It's definitely a relief. If my radiologist's dire warning had come to pass, and my head tumor was just the first of many recurrences that would come faster and faster, then a high test result would pretty much spell the end of the line for me. On the other hand, a low number--and this is a really, really low number--means that it's completely gone and I'm back to normal.

I don't think I'll quit "looking over my shoulder" for a while yet, but this news definitely puts my focus on the future and sets the expectation that it will be a long one.

So now it's time to get that dentist's visit over with. Though a root canal is certainly no fun, I guess I'll need that tooth for a while yet so it's worth the investment in pain.

Doing the happy dance,

Clem

Walmart: Good vs. Evil

2009-12-11T11:46:00.008-05:00

Someone pointed out a few days ago that I had stopped signing my posts on "Clem's Blog". It never occurred to me that there would be any question about who wrote what and I thought it might make it more interesting initially to guess who was posting. But again, not everyone thinks like I do so from this point on my posts will be in green text.

Sometimes we give things a bad rap just because it is popular to do so. Case in point Walmart. First off Walmart in the South seems to be different than Walmart in the West. Maybe I am wrong about this but my observations are that in the south EVERY Interstate exit has a Walmart and a Cracker Barrel. Consequently many Southerners who have witnessed the death of all the locally owned businesses in their community due to Walmarts domination of the market place have a bad taste in their mouth over this phenomena. I am one of those Southerners.

At any rate I still find myself looking for something that I know I can find immediately at Walmart and I take the easy way out and shop there myself. Two days ago I was in just such a situation. I wanted a small "I am living in a camper" sized crock pot. I have been eating from a crock pot since I was a kid and thoroughly enjoy coming home in the evening to a dinner that is ready to be scooped onto the plate . I knew that Walmart would have one and within 3 minutes of entering the store I was holding a crock pot perfect for the production of a two person dinner.

The place was packed of course and I found myself wandering around not so much looking at the "stuff" there but at the people. I remembered the days when I headed in a beeline to Walmart after picking up the kids from school, having no groceries at home for tonight or for lunches tomorrow, kids yelling out for school items that they had to have, and needing a new pair of panty hose to wear to work in the morning. What a blessed place Walmart was back then.

Passing by the school supply isle brought back lots of memories and for a few moments I felt shame for all the Walmart bashing I have done since my children have grown up. I watched young army men load their cart with CASES of ramen noodles, Mexican families putting Christmas presents in lay away, and elderly people riding around in motorized carts purchasing what looked like just enough food to keep them alive for the next week.

One of the things I love about travel is observing the culture of the area and I am here to tell you that Walmart definitely has a culture of its own. Walmart customers are dominated by a certain portion of the American socio-economic scale. They are busy people hustling to make ends meet and attempting to get the most efficient use of their time and money. In this respect I certainly feel like Walmart plays and important role in providing for the community.

So why am I writing about Walmart? Well I had one of those moments when I was there buying my crock pot. You know the moment. When you look around at something that just happened and no one else seems to think it is remarkable but you and you have this strange sense that you are in the twilight zone or maybe you passed out and are dreaming? This is what happened.

I am watching the army guys loading up their ramen noodles wondering how long it will take them to consumer the huge quantity in their buggy when a lady on the loud speaker says, "Attention Walmart shoppers will the person who owns the blue VW beetle please go to your car it is rolling through the parking lot". Her voice wasn't alarming just matter of fact and I immediately began looking around for someone to start dashing through the doors. I even walked up to the exit so I could witness the show. I was laughing out loud but when I looked around me I could not find one, not one person who seemed to have heard this or think that it was strange.

Feeling like maybe people were too preoccupied to hear the announcement I actually commented to a few people about the car rolling through the parking lot and they looked at me like maybe I was there with the people on the short bus. I think it was the second announcement about five minutes later that sealed it for me. Again the same lady with essentially the same message, " Will the owner of the blue VW beetle go to your car it is still rolling through the parking lot". Again nothing. No reaction. No comments. No laughing. Then It hit me.

Living with the fear of your car rolling through the parking lot was a valid concern for many of the people there. I actually began to wonder how many had had that experience. Probably a greater percentage that we could ever realize. Humbling isn't it. I suddenly realized that I have forgotten about the struggles that I had raising a large family and that my life has not always been as charmed as it is right now.

I left Walmart that night with a different attitude. I realize that the people who write bad things about Walmart are people who have the money to afford to go somewhere else to shop. Yes their stuff is cheap, yes they bully their suppliers and put people out of business, yes they are not always good to their employees, BUT many people NEED them especially right now. There are alot of people out there right now thrilled to have dented cans of green beans for half off and the thought of buying "organically grown produce" at three times the price seems insane and is just not an option.

So what did I take home from there other than the crock pot? A personal resolution to walk a mile in someones Walmart shoes before forming arrogant opinions. Hopefully it will help me be a more "real" person.

No more Drama

2009-12-04T11:33:00.004-05:00

Today I am glad that we put together this blog. You forget so many things during times of stress . I have been reading through some of the old posts this morning and I have found it quite cathartic. For some reason I am one of those people who does not like to cry or meltdown publically so over the course of my lifetime I have gotten very good at bottling things up. We all know what that does to you. So one of my goals on this trip is to begin taking better care of myself physically and to attempt to release myself from the stress bonds of the past year. Unfortunately that means reliving it and taking another look at what happened.

Fear is an interesting emotion. It is a necessary emotion for survival but if you let it have it's way with you it can dominate your life. I read alot about fear at a very early age and began developing ways to keep it from immobilizing me. Why did I do that? Because I was afraid of alot of things both real and imagined. It is the imagined fear that will get you. I call it the "what ifs". As you can imagine I really had to fight the "what ifs" during Clem's recovery. Not always having the time or the energy to sort out the real from the imagined I simply refused to let any fear in. Another reason for this was Clem. We are connected on a very deep level and I knew if he sensed fear in me it would trouble him and suck out much needed healing energy.

So what do I have now? A confusion about how to react to daily life again. A life without all the bombs and shrapnel falling around me all the time. I find that I am very non-reactive to most of the drama associated with life here in the United States and the important things to me have been reduced to just a handful of things. Where does that put me? Well I am happy. The fewer things I possess and the simpler my life becomes the richer I feel.

I want to sell our house in Chattanooga and all of our "stuff", sell the house in Alabama, and my car and live in our Bambi Airstream. Yeah I know that sounds crazy to you but you would be surprised at how freeing that it is. It takes me five minutes to clean house, there is no yard work, if the weather turns bad you just move on down the road, and the world is your home. I can't imagine that it gets better than that.

However, I have been advised to give the past year time to settle and make sure this is the right thing. Honestly, I don't really believe in the concept of the right thing. I have always believed that this life is my gift and I get to run it however I want. So shouldn't that mean that the right thing is my personal decision? What a mouthful. At any rate that is what we are doing in honor of some people that I love and care for very much.

After reading through the blog again today surprisingly I still feel no fear. I am not afraid of Clem's cancer returning, I am not afraid of him dying, and I am not afraid of my own death. What am I afraid of? Not living. Not living every minute of every day. It seems so remarkably clear to me that so many people around me are caught up in the daily grind of working so fiercely in order to pay for houses and cars and stuff that far exceed their basic needs that they are missing out on their opportunity to just live. To enjoy their children growing up, to take the time to form meaningful friendships, to bond with their spouse, to explore and be amazed by the world, and to talk to old people or people who are not like you. I believe that this is where life takes place not the mall. But then again this is my life view and how I am experiencing my life. As I said before everyone gets to create their own .

What else have I taken from this blog today? An extreme sense of love and appreciation for all the people who were there for us EVERY DAY! Maybe not in physical presence but most definitely in heart. It was very empowering to know that I could call sooo many people and they would be there for us in just a heartbeat. In a day and age when so many people are discouraged by the turn that the world has taken it is renewing to know that "real people" are still alive and thriving and that you too can join in the club.

For those of you who have followed our blog I wish you a day of peace and reflection. In this busy time of the year when society has forced us all into consuming rages don't forget to take the time to look at the other people around you and attempt to understand their life. Don't rush, don't worry. Look for something "real" out there today. Give you kid a hug and your time not money, tell you boss you can't work late, go for a walk and look at the sky and the beautiful scenery, spend some time alone relaxing. Just remember that life is a beautiful gift...don't waste it on the drama.

I love you all.

Pam

Pictures and not words

2009-12-02T13:11:00.003-05:00

I put together a few of our favorite images for you to enjoy. Nothing fancy. The music is simply for your enjoyment. It is the August Rush Symphony. I used this just because I enjoyed the movie and this bit of music. If you haven't watched the movie...you should. Also I had to compress the images so they might be a bit fuzzy but you'll get the idea. Enjoy.

Trailer Life

2009-12-01T20:10:00.009-05:00

Our new Bambi Airstream rocks!! Of course it helps that we also have a brand new Ford Truck to haul it across country. The tow system on the truck makes all the difference and the Bambi seems easier to pull than our Casita. It is awesome to see Clem constantly admiring his truck. I don't think there has been a single feature that he has complained about. Unfortunately our cousin Jerry just bought a Jeep with an auto start feature and we have been coveting that while staying here in cold cold Reno and getting out at 7:00 a.m. every morning. Are we getting old or what?

Currently our little Airstream is parked about 2 miles away from Clem's office. It is a quiet little place with a row of efficiency apartments running along one side of the park. It seems that most of these people are living here. There are none of the glitzy amenities available to attract tourists to visit just a nice clean laundry with 20 year old washers and dryers that do the trick but take all day. There is a school bus stop at the end of the road and in the morning I watch all the kids leaving their travel trailers to walk out to the bus stop to catch their ride for school. Frequently my mind races while wondering what it must be like growing up in a place like this.

Our trip so far has been great! Clem and I both seem to be regrouping and finding a place of peace again. We always have lots of time to talk on the road and we have had a huge break through in our communication level so that we spend more time enjoying each other and less time sorting through the confusion/misunderstandings. We have laughed alot!! Both at each other and at ourselves. Enjoying life seems to be coming very easy now.

Clem's health has improved dramatically in the last two weeks. His strength is coming back rapidly and most importantly his newly re plumbed GI tract seems to working efficient. More efficiently than we ever thought would happen again!! This has been a wonderful surprise to Clem and his confidence level has soared. He is also becoming accustom to being bald. I think he is more handsome that ever because as you know chicks dig scars!!

Our travels have taken us through Amarillo, Texas to visit with our son Logan and his family. We had an awesome time with them. Our Granddaughter Lorelai is truly a live wire. She is a confident intelligent self sufficient little girl and we wish we had had more time with her. Logan and Lindsay seem to be doing well after losing everything they owned in a fire this summer. He has a new job which he seems to be enjoying and we are very proud of them for the life they have made for themselves and the great parents that they have become. Remember how hard it was at this time of your life? Sometimes I think we forget our own past when looking looking at our children's lives.

Tired of being cold Clem and I spontaneously decided to visit Sedona, Arizona and check out the beautiful red rocks. All I can say is photographs and description could never do this place justice. We took the truck on its first four wheel drive excursion then hiked up a tall peak to watch the sun go down. Clem seemed totally renewed by this experience. He is truly a mountain man and the higher he goes in this world the happier he is!! It was a magical evening.

When we started our trip we got word that Clem's cousins Jerry and Caroline were going to be nearby at Lake Havasu, Arizona. They are such fun people that we decided to detour there for a few days and check out the area. The place was amazing, the weather was great, and the company just a fun as we expected. We did some canyoneering and hiking through the desert while also sleeping in a little extra in the morning and resting our bones from the long days of driving across country. Caroline's mother Dorothy was also there. She is 93 years old and still kicking up her heels. Her body is moving a little slow these days but she can still keep Jerry put in his place. Dorothy should be an inspiration to us all. She is a happy satisfied soul who seems to take each day at a time and enjoys whatever comes along.

Okay I seem doomed. I wrote about the rest of the trip and it seems to have been lost in the great internet black hole. I will write again later or tomorrow. Don't you just hate it when this happens?

Family First. Then...

2009-11-13T22:31:00.002-05:00

It's a blog entry from the road! We might just transform this thing from a boring cancer blog into a much more exciting travel diary. But first, let's take care of some long-lost family.

We got off earlier than expected, late at night on Tuesday, November 10th. Our start was something less than "auspicious", though, as it began in the pouring rain with a hole ripped in the roof of our brand-new (to us) Airstream Bambi. We got in a bit of a hurry and didn't communicate well what was going on, resulting in a minor crash into the gutter over the carport. Aarrgghh! Even so, with our new perspective on what's important in life it was the work of only a few minutes to mash a little Mighty Putty into the hole and seal it for good. Or at least until we can get a proper repair done.

Though it was late, it was still good to pull into my (Clem's) parents' house in Alabama. We visited for a little while, then went to bed, eager for an early start in the morning. We enjoyed another of mom's wonderful breakfasts and hung out for the entire day. I got a bonus--some time with my daughter, Kara. She's so much fun to hang out with that we lost track of the time and I was just a little late for dinner. Kara and I are often surprised that we "get" each other's humor and seem to view the world through such similar lenses. Few people do, it seems. Wyatt and Lisa brought my adorable neice Sophie over, while Janette and Buddy brought my other adorable neice and nephew, Savannah and Cameron. We didn't do anything special, but it was great to just hang out with each other.

I'm posting this from Elk City, Oklahoma, USA. It's just a tiny place about halfway between Oklahoma City and Amarillo, Texas. (Pronounced "nothing" and "nowhere", respectively.) :) We are at home in a little KOA park that has provided us with a great place to bunk in, and also some sweet WiFi.

Tomorrow we'll see my son Logan, his wife Lindsay, and their baby (my granddaughter) Lorelei. We always have fun with them, so we're looking forward to this weekend.

After that, we'll continue westward and see where our journey takes us. Dusting off our wings and living to fly!

Clem

Into the Blue

2009-11-08T09:57:00.004-05:00

Sometimes I am so glad that we have this blog so I can really know what goes on inside of Clem's head. Yes I was there when we got the CEA results and we did rejoice and I did the happy dance but all those emotions that Clem described on this blog were not visible even to me. He should play poker. There were misty eyes but of course they were quickly wiped away and if I had not continued to throw confetti and twirl around in the parking lot no one would have known that anything significant had just happened.

I remember the day in Mexico that the Doctor told me that Clem had cancer and I was waiting around for him to wake up so I could tell him. The entire world shifted for me at that very moment and I stood in the sunny hallway slowly breathing in and out, drawing as much energy as possible from the beautiful sunshine and the power of our love in order to prepare myself for the moment when his illness became reality for him. My mind rushed but not with fear or anxiety like you would think but with memories of special moments that we had shared under the water, on top of mountains, deep inside caves, and in the remote wilderness. I was satisfied in the knowledge that if Clem was to die the one thing that he would not have to feel was that he had wasted his life by leaving a long list of undone adventures. Embracing this thought actually made the task easier for me.

Telling Clem he was seriously ill was much like being with him when he found out he was well. There were no obvious emotional or physical signals just the quiet relaxed look that we all have seen stretched across Clem's face for years. I hugged and kissed Clem in celebration as we kept going back to the report to make sure that we had read it correctly and then he took my hand and we walked out the door for the parking lot. As we walked out into the beautiful day the world for me shifted once more.

It may sound strange that this shift was harder than the first but it was. Before, there was a battle to begin, a strategy to develop, and an army to assemble. The choices in life were being made for us and our jobs were clear. Now with the battle won the choices have fallen back into our laps and the gift that we hold in our hands is very precious. We now see the gift in the fragile form that it has always had but we could not see until it was shattered and had to be put back together. How do you protect such a thing but still enjoy it to the fullest?

So that is where we are. Attempting to regroup and form a life of meaning. We have started this journey by loading up our camper and planning a trek across the country. Clem has pulled out ALL of his gear. Those of you who know him understand what that means. At first I was frustrated at this because of the mountain of stuff that invaded the house but then I realized that he needs to go back to all the memories that these things bring so he can decide where he wants to go now. There seems to be only a few things that he wants to do. See his son and visit with his granddaughter, attain his recertification for his industrial rope work, and rock climb. So this is our plan.

I do not want to romanticize what has happened to Clem and I over the past year but there is a beauty that develops between people who face intimate and life challenging moments together. After sitting in the hospital for more than a year I have been able to indentify those who have developed such bonds by the contentment and comfort they have with each other. I also have a clearer picture of the reasons why man and woman choose to spend their lives and their deaths with each other. This realization has been overwhelming beautiful to experience.

And now??? Where do you go from here? We don't know. It doesn't really matter. All that matters now is living. Real living. Not television, not shopping, not politics, and definitely not housework!!! All I want now is to relax, to shed all the ideas of what once was important, and to open myself up into a being capable of perpetual learning. A maleable creature that develops their ideas based on what they personally see and feel and know to be true. I want to walk down that road holding hands with my beautiful husband who has taught me so much about life and living already no matter where it leads.

So off we go into the wild blue day by day and minute by minute.

Pam

CEA Results

2009-11-06T09:41:00.002-05:00

It was a beautiful morning here in Chattanooga, perfect weather for the final session of radiation therapy. With the weekend before us, and a long visit with the oncologist scheduled for Monday, we couldn't wait to take a peek at the results of the blood work from earlier in the week. The CT scans will have to have some professional evaluation (even the oncologist doesn't look at them, only at another doctor's remarks about them) so we didn't ask to see those.

There's no feeling quite like asking for the results of a test like this. My future literally hangs in the balance, here. Having "failed" it one time already I was especially nervous. I pasted on a smile anyway and waltzed into the oncologist's office to ask the receptionist for the results of the CEA test. She said "No problem!" and brought up the appropriate screen on her computer. Then, with a little bit of a frown, she said "I'll be right back" and stepped into the rear office.

My smile turned into what must have been a sick-looking grimace as I felt ready to throw up on the floor there at the desk. Dammit! We went through this before: asking for the result, then getting the shuffle as they located someone appropriate to bring the bad news. If I thought I could move without being sick and falling down I would have run out the door right then. Pam was trying not to show it if she had similar thoughts--she's a trooper even when the going gets tough.

The receptionist came back with a sheet of paper, saying "The printer in the back works better for me." With her same beautiful, inscrutable smile, she passed along a sheet with only a couple of lines on it.

Desperately trying to make sense of the numbers there, we read that the results of my test are 3.4.

I experience that moment that lottery winners must feel, when the ground seems to fall out from under their feet. My goal is any number less than five. Three point four is WAY less than five--ohmygod that's the right answer! Pam and I are both holding back tears (unsuccessfully, in my case) and doing the happy dance in lieu of backflips down the aisle. The receptionist comments "We need a little happy dancing around here." I can't really do more than shuffle to the door. It's too big for one moment. Maybe on Monday we'll bring in a marching band with elephants on parade to do better justice to the moment.

Walking on clouds, we feel the lovely sunshine all the brighter, the crisp autumn air all the fresher, every-every-everything all the sweeter for this beautiful reprieve. From here on out, every day is a special gift. We resolve not to waste a single one.

Clem

Nearing the End

2009-10-31T11:51:00.002-04:00

So it's been a whole month since my last post. Nothing much has happened until this week, and now suddenly there's a whole lot going on.

First, I had a very nice 'all clear' report from my colon surgeon. He felt around in there (seemingly about elbow deep) and said that I was healing normally and looking good. What's more, he said that there was no reason for me to see him any more unless I had a specific problem. One doc down, four more to go.

My oncologist agreed with me that there wasn't much use in my having a portacath in place any more, so I'll be having that taken out next Tuesday. It's not a big thing, but it bothers me every time I use a seatbelt or wear a full body harness, so I'd just as soon have it gone. By an interesting quirk the surgeon scheduled to remove it is my liver surgeon--he's the best. I will ask him if he also does this "light work" as part of his duty, or whether he took on this task just to see my insides again. He is very proud of his work with me (as well he should be!) and lights up like a bulb whenever he sees me. Such a response makes me feel good, but it's also a little scary. I imagine him saying to me "Wow! I can't believe you actually lived!" So that will be the end of my involvement with chemotherapy and liver surgeons. Two down, three to go.

Last week I visited the brain surgeon's office, but all I saw there was his Physician's Assistant. She was worried that the radiation could cause swelling of the brain underneath the new plate. In order to check this, I'll have a CT scan next week. While we're at it, we'll go ahead and do the chest, abdomen, and pelvis in addition to the brain. I'm not sure what symptoms might go with any such swelling, but I'm not feeling anything. Perhaps the odd seizure here and there...? I don't anticipate seeing the brain guys again, though I should get a call saying whether the scan looks good or bad. Three down, two to go.

Next Wednesday I will see my radiation oncologist. At that time I will have only two more sessions of radiation left. There don't seem to be any ill effects that he didn't predict and that he wasn't worried about, so I'm expecting just a "rubber stamp" visit with him and then to be let go. If so, that will be four down and only one doc left.

The oncologist is my principal cancer doctor. He was the first one I saw concerning treatment, and so it's fitting that he'll be the last one. I will see him the week after next, after the CT scans have all had time to develop. My plan is to get a CEA test order (due four weeks after the end of radiation) that I can take with me to Nevada. Did I mention that we're taking the Bambi out to Reno for the annual company training event with Ropeworks/Skala? It's during the first two weeks of December. Anyway, I sure hope that the CEA test yields a really low number. Remember, we're going for something less than 5 (and I started out with well over 8,000.) That will really tell the tale about whether or not this disease is really in remission. I'll be thinking all kinds of positive thoughts, hopes, and prayers for that outcome, but also living life in the meantime with this first real road trip in more than a year. If it goes well, we might just head to Alaska and not come back at all. Five docs and a whole 'nother lifetime gone and over with.

But for the ugly bald patch on the back of my head I look and feel just about normal. I'm getting stronger every day. Though my stamina and strength aren't up to what they should be, I'm better off than most 50-year-old men I know. Climbing 2 or 3 times a week is helping a lot, both with my body and my spirit. It's the best form of physical therapy for me.

I'll post something next week when we get the preliminary reports from the CT scans, and then again the following week once we talk with the final doctor. After that you'll have to tune in to a road trip blog to catch news of this ramblin' man.

Clem

An interesting meeting, yet life goes on

2009-09-29T21:10:00.002-04:00

So, last Friday I met with the radiation oncologist to have a planning meeting for the radiation therapy. We had a few questions going in, and more of them (as always) coming out.

The pathologist's report didn't discuss margins on the craniotomy. Usually, they like to get a two-inch margin around the outside of the tumor. This tumor, it turned out, wasn't just a little marble-shaped ball but was rather a kind of "spat" shape. They really didn't get any margin at all out of it, even though they took out a pretty big piece of my skull. (Maybe 4cm x 6cm?) The radiation doc went off to do some planning based on that, and his coming talk with the brain surgeon, and will have a better idea of what to do when I see him next on next Monday.

The upshot of it all is this: radiation is a better idea than ever due to the small margins and my relatively high CEA count. (CEA should be 5 or lower, not 20.) The risks are low, the side effects are minimal, and it is effective at eliminating cancer cell growth in a targeted area. I'm not thrilled at 5 weeks of going there and getting nuked every day, but it will only take 15 minutes of each day and I've done it before.

Here's the really good news, though. I asked the doc if I could take a couple of days off for the AMGA testing, which will be in West Virginia, and he said it would be fine. His words were "Sounds like living, to me!"

Me, too, doc.

Clem

Hamster in the Microwave

2009-09-22T08:00:00.002-04:00

Back to the grindstone. So yesterday was enlightening and informative. We met with the radiation oncologist and discussed where he thought I was, what was happening, and what to do about it.

This particular doc has always been...skeptical...about my chances here. He has tried to be as up front and realistic as he can. I (Clem) appreciate that more than Pam does--she was about to jump down his throat! The good news is this: because there appears to be only a single site of new cancer growth, the odds are still with us that this is just an anomaly and that aggressive treatment will fix it. By "fix", they mean that there will be NED (no evidence of disease) and I can look forward to some long time period before having to worry very much about recurrence.

It seems that there is a pretty reasonable chance that a stray cancer cell got washed into the scalp around the scar by the bleeding that is normal for surgery. The purpose of radiation is to kill any of those things by stopping cells with rapid growth habits around the scar. Cancer cells have that kind of growth, but so do hair follicles. He said it's likely that I won't have my usual head of wavy Fabio hair growing back there, or much hair at all for that matter. I'm trying to decide if I'll do a Yul Brynner or go for the more modern Vin Diesel look. Yeah, any of those guys could easily be confused with me if the lighting was right. *eye roll* I told him that I had a little time, and would trade time for gentleness on my hair. (We're only talking a week extra, here.)

Speaking of time, here's the timeline so far: I'll meet with him this Friday for the radiation planning session. That's where I get tattoos and Sharpie drawings on my head. Next Wednesday we'll start the treatment, and it will run every weekday for about five weeks. Twenty or twenty-five sessions.

Each session will be short and painless--easier than last time. I'll lay face-down on the table and they'll crank up the X-Ray generator and zap the whole scar and a little bit of margin around it. Total time from start to finish: 15 minutes or so. There shouldn't be any problem with side effects on my brain, as neural tissue is very resistant to radiation. (It doesn't grow.) He said the skin will likely get reddish, and maybe kind of pimply for a while, but that will all recover quickly. Hair will probably fall out around the scar, and might re-grow, but probably not.

With that, I should be done with it and on the road.

That's my story, and I'm sticking to it!

Clem

20.3 and falling...

2009-09-14T19:17:00.003-04:00

Today was nothing but good news! All the prayers, well-wishes, positive energy and good thoughts have paid off. Nearly finished with this chapter, and I am SO eager to get on with the next one. Our dear friend John the Bear from Seattle was here today, on a break from visiting his family. He got to share the news and we were happy to have him to celebrate with in person. He's been a rock and an inspiration for me, with tales far beyond this little story to tell.

The best news: no more chemo. That's over with, done, gone, behind me, and past. Woo hoo! I was thinking of a big "final chemo" party, but this trumps that by a good margin. The oncologist agreed with my wishful thinking of that knot on my head being the last refuge of the last cancer cell on the run from the chemo. Now that last refuge is gone and there's a titanium shield there--chew on that, cancer cell!

The next best news, my CEA marker was something like 20.3 and dropping like a rock. That's down from 80 the last time we checked it. Next time, we fully expect to see something in the 5 range.

It's not all quite over, though. It looks like they'll have me back at the radiation center for a littler insurance on that skull spot. With a few mild zaps they can "sterilize" the area and ensure that no more of those nasty single cells get away. Because it's external to the body (mostly) there shouldn't be too many ugly side effects. We'll meet with the radiation oncologist on Monday and see what he says.

Tomorrow (Tuesday) I'll see the brain surgeon to have the zipper of staples pulled out of my head. With that, his work will be done. I wonder what he'll have to say about that squeaky plate?

More news as it happens, but we're looking for this trip to be downhill from here. I have a life to live and I'm tired of putting up with these shackles of illness. No more pacing the cage...

Clem

Bolts and staples

2009-09-09T09:12:00.006-04:00

Nothing of substance to report, but here's one interesting thing: in all my experience with long surgical scars, they've always used some glue to hold the incision closed. No bandages, not much scar to show for it.

Imagine my surprise when I remove my turban, and then the layer of 2x2s underneath it to reveal a long, jagged line of big metal staples! All I need now is a bolt or two at my neck to complete the Frankenstein image.

Even better, I think, is the more modern Zombie image. I've taken to shambling around, growling, and suddenly raw human flesh is looking pretty tasty! Grrrrllll...

Feeling a little silly, a little hopped up on one too many goof balls again, and a little tired all at the same time this morning.

So now it's evening, and I'm filling in a couple of blanks. This neurosurgery has been the wildest experience of them all. Even though this was for a bump on my head that was easily visible and felt with the fingers, the surgeon is used to "going in blind" and having all kinds of cues around to show where he should cut. To help with this, they take a special navigational MRI, complete with little green "landing lights" that show up on the scan, providing solid points of reference so the surgeon always stays exactly where he thinks he is with respect to the tumor. Those things looked downright creepy!

So, of course, I have to put them here for you to feel creepy about, too. What do you think of that? Kara (my daughter) got it immediately, and asked if they would light up if I thought really hard. Stephanie (another daughter) said they were bullshit detectors. That seemed true enough, as they never did light up when I was speaking.

One of the techs there in the prep room wanted some for his own head, to use for Halloween. This could get pretty ugly before it was over, if we kept going down this road!

Tonight, I'm to the point where I'm just about off the Oxycontin "goof balls" and getting by with acetaminophen. They tell me that people abuse these drugs all the time, but it's just not my thing somehow. Like gambling, I just don't get it at all.

Next time I see a doc will be the oncologist on the 14th, then the brain surgeon on the 15th to have the staples pulled. We'll see what kind of answers and progress we can have to report by then, if nothing interesting happens before.

Cheers,

Clem

Home

2009-09-07T09:12:00.004-04:00

Clem and I left the hospital yesterday around 1:oo. We were in our bed and sleeping soundly by 2:00. After a 2 hour nap we got up for food and to wash the hospital from out body and clothes. An hour later Clem wanted to play scrabble so he could concentrate on something other than the hole healing in his head and the pain that it was producing. It sucks being beat by a man who was just released from a neurological intensive care unit and is high on pain killers but it is something that I have grown accustom to and it gives him such great pleasure to thrash me.

We called it an early night and slept long and hard waking at intervals attempting to make his head comfortable and telling each other our crazy dreams. At one point Clem mumbles to me that he his is going to go back to sleep and think happy thoughts and hopefully that will produce some happy dreams. I can't even begin to imagine what scenes are playing themselves out in his brain. For some reason I thought of all the animals that live under big heavy rocks and what it must feel like for someone to come along one day and lift it up, look, and then drop it back down. How do all the animals continue on with life wondering if that will happen again and then I visualize Clem's brain experiencing those same questions as the surgeon closes up the hole in his head. Exhaustion can sometimes be like a really weird acid trip!!

Anyway, we are up and about this morning. Clem is still weak and struggling with both nausea and pain. I think the pain pills are producing the nausea but they are NECESSARY at this point in time so we are taking it easy with loud noise, bright lights, and sudden moves. We have such an amazing house for resting and this morning we just laid in the bed watching the green leaves gently flutter on the trees outside our window attempting to let the negative images of being in the hospital once again fly off in the breeze.

WD-40, please!

2009-09-07T08:53:00.003-04:00

Home at last! It just feels better sleeping in my own bed, even if I'm up every few hours re-upping my drugs. (Is that a real word these days?)

The strangest thing happened in the night. I heard a strange squeaking sound, so I rolled over to see if it would go away. It got louder. As near as I can tell, the plate in my head is squeaking! It makes a tiny squeak sound when my heart beats. Pam put her ear on my skull and said she could hear it, too. Maybe it just needs a little WD-40 on it. Or it could be that the skull will grow back around the titanium mesh, and thus stop squeaking that way. It only happens in a few sleeping positions, so I guess it won't be a bother to me.

Aside from that, I'm on the "normal" recovery track. I hurt quite a bit when the drugs wear off, and I sleep quite a bit when the drugs kick in. The other times I feel almost lucid and human--sings of better times to come. I expect this recovery to take a fairly short time (compared, say, to that hellish colon resection) and to have few side effects.

I'll let you know what else is happening as it happens.

Cheers,

Clem

Still in ICU

2009-09-05T21:46:00.002-04:00

Clem didn't make it out of ICU today only because the Doctor will not be making rounds until 1 a.m. We decided that he would get more rest where he was and not to sweat it. Our experience being out in a standard room is that the staff is in every few hours waking you up and fusing over you. Not the case in ICU because there is no question about your condition since all your systems are being monitored by computer. It is quiet there and they keep the lights low which makes it easy to drift off to sleep aided by the pain medication. He is having a bit of pain but he did have a chunk cut out of his skull. I left him at 9:30 drifting off to sleep after fusing over his bed and rubbing baby powder on his back.

In The Chair

2009-09-05T15:27:00.003-04:00

I had a visit with Clem at 10:00 a.m. He was sitting in a chair and had already taken a trip to get a ct scan of his head. His nausea seems in check and his pain is being held off with percocet. He was having trouble staying awake for our visit. He seems in good spirits but is ready to be out of the intensive care into a room where we can be together. He likes for me to watch him sleep.

I have slept on and off today just out of exhaustion. Right now I am in the cafeteria because it is quiet here. There are four televisions in the waiting room and the Tennessee football game is on. Visiting hours are at 4:00 so I am just hanging out until it is time. Alex and Stephanie came to visit earlier and brought me some fantastic chicken tortilla soup so I am all warm and satisified inside. I have a great book on tape but I have been nodding off everytime I crank it up. I think I will just walk around and gather up some hospital germs while waiting for visiting time. Clem and I have been texting back and forth and it makes me really miss him.

No More Tumor

2009-09-05T09:42:00.005-04:00

Sorry I haven't posted until now. The laptop was in the car last night and I had very sketchy service on my iphone. Clem went through the procedure without any complications and last night at 9pm he was alert and eating jello and ice cream. The plan is to heal for the next few weeks and then there will be some radiation on the site. There may also be more chemo based on the outcome of the biopsy.

If there are no complications such as bleeding or infection, Clem will go into a room today, stay for a day there and then home. I am already weary of this place. Erlanger is much, much bigger than Memorial and we have already spent most of the week working our way through its many mazes. Clem is on the fourth floor and I am on the first and there is something disconcerting about not being closer to him. There are also so many people here that you wonder if they could actually seek you out if you are needed.

We have a great Doctor who is also a great communicator which has filled us full of positive feelings about the procedure being a long term success. That really means alot when you have been through so much and are taken by surprise like we were. Clem is still wrapping his head around this new complication and still asks lots of questions about what this means. I am trying to keep him focused on the here and now and deal with tomorrow when it gets here. Sometimes that is a real challenge for both of us. In that vein our goal for today is getting into a room and getting out of the bed for the first walk without fainting or puking. If we get that over with today that will be enough.

Thank you for thinking of us.

Pam

BusyBusyBusy!

2009-09-01T19:02:00.002-04:00

We went from being very boring for a couple of months, to being really busy and overwhelmed, all in the space of a couple of weeks. Here's the news:

This morning we went to visit the neurosurgeon. There's little "neural" for him to do here, but these are the guys who are good at going through people's skulls, so they're the ones you want to work there. He agrees that it shouldn't be too hard to take this little bump off. I was hoping for him to only have to deal with the outer layer of skull bone, but it doesn't seem to work that way. He'll have to remove a whole section of skull, maybe 2cm x 3cm in area. He called this surgery a craniotomy. For a brain surgeon, this is just the beginning of his usual routine, which is to work on the actual brain itself. In my case, it should be the end as well, as this kind of tumor almost always respects the dura (the brain's covering) and stays only in the skull bone.

In the morning (Wednesday morning) I'll head over to the hospital for pre-surgical stuff (blood test, etc.) Then on Friday morning I'll get up early, have an MRI done of the site, and get marked as to where they want to cut. The surgeon was just used to doing it this way, even though he can see the bump with his eyes. Much of the time his target is invisible underneat the skull, and they use a little wand to precisely locate the incision in 3-D space.

Friday afternoon at 12:30 is "tee-time". I can't imagine that the procedure will take very long. It won't seem long to me! He said I'll be under an general anesthetic, though for some brain surgery they do it with just a little local numbing. He will take out the little oval of bone, and then lay in a titanium mesh "plate" to protect the brain. I explained that I do a lot of work at height, caving, climbing, and such and inquired about the strength of the patch. There is an optional bit of stuff he can add that will make the patch even stronger. (Bondo brand body repair filler!) It's similar to dental cement. He said there's a slightly increased risk of infection with such an addition, and that with my lower-than-usual white blood cell count we might not want to take that extra risk. He's thinking about it now.

After one night, or perhaps two, in Erlanger's own special neural Intensive Care Unit I should be back in action and good to go.

My oncologist has me scheduled to begin chemo treatment again (hopefully just the last two doses that he "owes" me) in mid-September. We still don't know what else to expect. Among the options are these:

change chemo blend and start a new regimen to target whatever caused this skull bump
call this a "one-off" and just finish the last two doses of the old regimen
take a dose or two of radiation to ensure that the brain bump is gone and doesn't come back
or just skip the radiation because they were able to get all the stuff and a little margin around it and now there's nothing left to irradiate

And maybe more things to consider. I'm pretty eager to talk with the oncologist again and find out all these details.

That's about it, then. I don't expect to have any significant news from tomorrow's tests, but if I do you'll be the first to know. (Outside of my FaceBook friends.)

Cheers,

Clem

Ass cancer of the head?!?

2009-08-28T22:29:00.003-04:00

This should go in the "News of the Weird" column of the paper. The PET scan came back totally negative for everywhere in my body except the bump on my head. Therefore, the cancer must have taken up residence there. It's not impossible for a traumatic event to trigger such things, it seems. Does this mean that my colo-rectal cancer is now cranial-colo-rectal cancer? What does that say about me?

Let's not go there, then, whaddya say?

The CEA test came back. Indeed, it wasn't 50 at all this time. It was 80. It seems their machine is working just fine.

If it had to come back, this seems to be the best possible place for it to happen. It's in a place that looks like it should be easily operable (though we'll know more after talking with the neurosurgeon on Monday.) It's outside the brain, and encased in a bony knot on the back of my head. It's not big at all, maybe the size of a marble. My hair stylist didn't comment on it when she buzzed my hair the other day. Hmmm, after all this time of keeping my hair, even through the chemo, this may be when I get to shave it off after all. Maybe I'll look like Vin Diesel!

The big question is: how close to "done" am I? If this knot comes off clean, and my CEAs go back down toward zero where they belong, what is the next step? Will any little bump turn cancerous or is this a one-off event? No answers yet. There are many possible next steps, though. There is a mutation called KRAS (kay-wrass) that is resistant to the ordinary chemotherapy regimen. They are testing for that mutation now. (Since I was originally VERY responsive to the therapy, does that mean I might still have it? No idea.) If the KRAS test comes back positive, then there are other treatments available, including the one-time injection that we went to New York to investigate at the outset of my treatment last year. There is a virus that's in the final stages of testing that infects only cancer cells--it seems that I'm a good candidate for that trial, too.

What I'm looking for is to have this bump gone and then be done with the whole mess. It's been a full year now, and we're all tired of this thing. At some point, I'm going to get fed up and just move along with my life and get back to being too busy to be sick. There's a doctor who does a lot of cancer work who says there is a genuine benefit to such an attitude; that it can make the difference between someone who lives far beyond expectations and the other person who dies "on schedule" when told he has x months to live. Not me, man.

This weekend we're planning on taking that camping trip that we missed, relaxing in the warm southern humidity of late summer. We're pretty tightly focused on keeping a good attitude, supporting each other, and making further progress toward that light at the end of this long tunnel.

Cheers,

Clem

Through the minefield, one step at a time

2009-08-24T21:36:00.003-04:00

Spoke with the doc today. The verdict was--no surprise--need more tests. The CT scans all came back with no visible signs of cancer in my pelvis, abdomen, or chest. One step through the mine field, and so far, so good. That's good news! Still, it doesn't explain the rise in CEA numbers.

He seriously doubted that their CEA machine had made a mistake, but it was "down" the day that they ran mine so I leaned on him to run another test. We'll have the results of that test tomorrow. Wouldn't it be nice to hear that their machine had "burped" and the number was really 5.0, or 0.50, rather than 50? A long shot, but worth checking.

On Thursday, we'll do a PET scan. Cancer cells love the antimatter-enhanced flourine dye, so it goes there and stays there while they do the imaging, yielding a good photo of even small cancerous areas. With luck, it will show nothing in my abdomen as well. I'm really tired of them hacking chunks out of my guts.

A few months ago I bumped my head, which raised a little "goose bump." It's still there, and is still hurting a little bit. The doc was quite interested in it, so he had me do a CT scan of it today, and it will be included in the PET scan. Maybe I have a brain tumor! Nah, this would be just an abnormal growth in the skull bone, and (I hope) outside the brain entirely. I was blaming its slow healing on the odd blood chemistry that the chemo is causing. Pam did not appreciate my "self-diagnosis" and was quick to tell anyone who would listen all the gory details of my phrenology. We'll see what that's all about soon.

In the meantime, we're trying not to worry too much. Mostly we're just tired of this whole mess. We'd rather be blogging about traveling the continent! A serious week of retail therapy has helped our moods considerably, as you might imagine. At left is our new home: Ford F-150 truck and Airstream Bambi trailer. Y'all come and visit any time, if you can catch up!

I'll post some more later on this week when we know the results of the PET scan, or earlier if we get significant news.

Cheers,

Clem

Two steps forward, one step...?

2009-08-21T08:19:00.002-04:00

It's hard to believe it has been almost a month since I posted here. That's because nothing was happening. I've been doing the final, preventive few rounds of chemo, which were diluted down a bit to allow my blood to recover better in the off weeks. That meant relatively few side effects, and thus not much to read about.

On Monday of this week I went in for another round, and gave blood for another CEA test. This is the test for tumor markers, which can indicate cancer activity. It takes them a while to get the results of the test, but this time it took 3 days, as their machine was broken. Wednesday, when I went in to get "de-pumped" (have my chemo pump removed) they finally had the results.

As you may recall, I started off with more than 8,000, after treatment it dropped to the 200's, and after this last surgery was down to 12. Our goal is a number less than 5. As I was waiting for the de-pumping, Pam asked the nurse for the results. She had it, but didn't share with her. Then my phone rang, and it was my oncologist (who wasn't in the office that day.) It was his job to break the news: CEA marker was at 50.

It's not clear at all what that means--maybe nothing. To shed a little light on it, he ordered a CT scan, which I took yesterday. That blueberry taste they put in the barium contrast solution is one that I will never forget, and always associate with some nasty process. We'll have the images on Monday, when I go back in for lab testing and (hopefully) to see the doc.

I've been making grim jokes, but Pam doesn't seem to think they are very funny. We've been here before, and we can deal with being here again. Somehow.

In the meantime, we plan on taking a short trip this weekend to break in our little Bambi trailer and take our minds away from our routine for a while. Watch for something more early next week, as I find out the news myself.

Cheers,

Clem

SSDD

2009-07-28T12:59:00.002-04:00

Same Stuff, Different Day. The gov called again and said I should take another week off. My blood cell count for white cells and platelets are just the same as last week--poor. I'm right on the line between being too low to continue and maybe just going on ahead with it. The doc made that old joke about the treatment being successful--no cancer here!--but the patient died. Ha...ha...

We've had company in to visit both this past weekend and the week prior, so the time off has been really welcome. "Mo", our buddy from Pam's first time at Burning Man, was a pleasure to have around. One never really knows how people will transplant from that crazy environment to this crazy one, but we both felt really good about her coming and sorry to see her go.

Hardly had the dust cleared than my colleague from Ropeworks/Skala and a Burner as well, Mike, came by to hang out. He and I spent the weekend doing "man things", and we had a ball. Got in a little caving, a little target shooting, and we even spent a little time drilling a hole in the ceiling of the "man pad" so as to hang a rope and fine tune his new Mitchell rope climbing rig. The testesterone was so thick in there that Pam couldn't come in for fear of growing a beard! That's what having a special man-cave is all about, isn't it?

So I'm enjoying this week of feeling better than I have in a long time, even though it will cost me time on the "back end" of the treatment regimen as the promised four more doses come due.

Cheers,

Clem

Call from the governor

2009-07-20T17:07:00.002-04:00

Today was supposed to be a "chemo day", but that didn't quite go as planned. It turns out that the blood issues from last time are still issues today, so we're going to let it ride for another week and see if I can build up some white cells and platelets. This will shift my end date back by a week, and now I'll have to adjust my summer calendar to shift things by a week, so if you're counting on me for a particular date try to remember that. (If you can remember it, you're doing better than I am.)

Gotta make this one short, our friend Mo from Burning Man has arrived. Time to entertain!

Clem

Deja Poo

2009-07-13T13:10:00.003-04:00

Clem, here. There's not a whole lot to report, but I'll go ahead and write a few lines about what's going on anyway.

My medical life these days consists of "week on, week off" chemo treatments and re-training my colon to do right. During my "chemo week" I'm pretty tired, so I sleep most all day Monday through Wednesday. On Thursday I feel a bit better. Enough so that I want to do things, but not enough that I'm actually able to. I find myself sitting down a lot and resting, wondering where all that energy I used to have got away to. By Friday I'm back to a functional level, but I still get tired easily. On the weekend life is pretty good, and during the "non-chemo week" I try to push it a bit and get really active. Today is the first day of "non-chemo" week, which is why I have the energy to write a bit. Over the last weekend we were pretty busy, with a short canoe day-trip on Georgia's Conasauga River in Murray county. Then a friend and I competed in a match, where I did respectably well. He also did well, but more importantly we both had a good time. Next weekend (my peak before the next treatment) we're planning an overnight canoe trip with my daughter Kara on Alabama's Sipsey River. She got a new (to her) canoe for her birthday and is eager as a beaver to try it out on a river.

Meanwhile, I'm learning how to control my new and improved colon. The surgeon said that I might have to go again and again in "clusters", and sure enough--he was right. The other night I went to the bathroom just before sleep. Then again an hour later. And again, as soon as I'd washed my hands. And again just as I made it back to bed. And so on, through the night. I got to where I wouldn't even turn on the light or wake up. Maybe it's not medically correct, but in my mind this happens because the new section of bowel is used to "passing it on" instead of holding it for a convenient time. He said it would get better and better over a period of months. I suppose it is getting better, and I'd sure rather be dealing with making progress this way instead of managing an ostomy.

Today's lab visit was an easy one: just a quick finger stick. The report, however, was disappointing. Platelets (for blood clotting) were low (65, where the normal minimum is 150) , and white blood cells (for fighting infections) were really low (2.1, where the normal minimum is 4.5.) As they reduced the dosage of chemo last week I was expecting higher numbers. I'm trying to avoid getting an infection or cutting myself, but I don't know what else to do to boost these numbers.

That's my life, and will continue to be for the next couple of months. Next week I'll begin chemo session #4, with three more left in the countdown. (I count backwards because it makes the numbers seem smaller and the end goal appear closer.) After that it should be a one-way trip back to normal health and strength. That will certainly feel good! It gets very old working my way back to a good feeling only to be kicked down again. Still, if that's what it takes to get better, then that's what I'll do, and I'll be glad of the opportunity.

Onward and Upward

2009-06-24T14:36:00.005-04:00

The smile truly has an awesome positive power. Clem's face has finally remembered how to smile again and all the energy around us has changed. I noticed yesterday that not only was he smiling he was actually laughing from time to time and not just at me. It seems that his digestive system is beginning to act relatively normal and the pain and urgency that he has been experiencing has subsided. I think he was afraid to mention it at first but now he is celebrating in the almost normal experiences taking place inside his gut.

As I have mentioned before the Doctors tell you little bits along the way. First they say, "We think we can cure you by cutting you up, nuking you, and injecting toxic chemicals into you." Then they say, "We think we cured you but things may not really work right again and you may elect to have an ostomy because it will just be easier." I heard the Doc say this and Clem heard the Doc say this but we never discussed it or accepted it as a possibility. Yet last week I suspect that Clem was a little bummed because he wasn't working right and he didn't know if he ever would again. He has already lived with the ostomy thing and really didn't want to go back there but there does come a time.

His step now has a little spring in it and his energy is tinged with hope again. It seems that his confidence that a normal life is still possible for him has returned. I too have been able to rip all the nasty negative spider webs away from my subconscious and join in on the trek onward and upward. His smiles have always made my heart sing.

Thanks to everyone who gave us a punch in the arm last week when we were struggling. Just wanted you to know how much it meant and that we are better and back on track again.

Polyester Moo moo's and diapers

2009-06-20T20:25:00.006-04:00

I don't like to post when I'm not feeling well or down because I learned a long time ago that nobody wants to hear about YOUR "stuff". I can't tell you how many times people have asked me about Clem or myself only to listen long enough to segue into their own saga which of course is much worse. During the course of Clem's illness this blog is the place where I have verbalized my feelings the most and I think it could be because you guys only comment with words of encouragement and hope. We both need that so much right now.

We have spent most of the week in silence. Negative thoughts have been running around in our heads and our dreams. Night time has not been our friend. I have been restless in my sleeping and Clem has had all sorts of foreign signals coming from his newly reorganized body which have caused him to visit the bathroom over and over until the early morning hours. I am unsure how we got here but we have both been in a bad head space. I feel horrible because I haven't been able to be there for Clem this week. Oh I have cooked for him and done the laundry and made sure he was not in an emergency situation but I haven't had the energy to give much more. He has felt terrible one minute and fine the next and basically this is just another bad patch that he is going to have to wade through...again. His face has been full of pain and frustration and I can tell that he is sick and tired of being sick and tired. I don't blame him.

We are now alone in our house. Jessica, Nic, and Adley have moved out into their own place near Alex and it was great to see them so excited to jump out on their own. I think they stayed longer than they had planned just to support us but as Adley grew larger the house grew smaller and it was time for them to seek larger accommodations. We will miss them and the experience of helping them start their own lives will be a memory that we will always hold dear. There is a peaceful silence around the house that I have missed and I am hoping that the slower pace will give us a chance to recharge ourselves. We have both been cleaning and reorganizing as energy has permitted but our hearts just don't seem to be into much.

Wednesday we went to return some unused ostomy supplies just to get out of the house. The trip was very quiet and because I was driving, Clem examined the bill boards, businesses, and people that we passed with a critical eye. "We are circling the drain" he said while staring out the window. "We as in you and I or we as in humanity?" I asked. "You and I. You are on the verge of wearing polyester moo moo's full time and I am on the verge of wearing diapers." He looked at me and grinned then said "Isn't that some shit!" That comment was the "funny highlight" of the week for us. I for one have decided that if I am going to be destined to life of brightly colored moo moo's then I am going to have an awesome pair of cowboy boots from Mexico to match and a beautiful straw hat. I have no idea how he will accessorize his diaper.

Anyway, that gives you a little idea of where we are right now. I actually had a few moments of weeping this week that helped my attitude a bit but I am still topped out with the build up of stress from the last year and my body is screaming at me to let it go. Clem's body is screaming at him too. His calm resolve has turned to frustration and anger at times and he so deserves to have those emotions. Unfortunately they suck away what little energy he has right now and all those mantras about the bright light at the end of the tunnel and tomorrow is another day are just pissing us off right now. We deserve to be negative and just like everything else we do we do it whole hearted so this week has been bleak and dark and a huge struggle just to hang in there.

With that said, Clem is improving. We go back to the Doctor Tuesday to start chemo again. Two more months of that and his therapy will come to an end. I thought I had a handle on all of this until this week. I'm a realist. I know that life is not fair. I know that sometimes life really sucks. And this week I learned that sometimes it is okay to just be pissed off about that. It doesn't change anything but its okay.

SIDE NOTE: The correct spelling for this traditional hawaiian, flowing and colorful woman's dress is actually mu'u mu'u (correctly pronounced moo-oo moo-oo) .

A Dirty Wound

2009-06-15T13:24:00.002-04:00

Home at last! Clem here, with an update on how I am and where I'll be going next.

The "take down" surgery went quite well, and I guess you've been following along with all that it took in the hospital to get my digestive tract working again. Let's catch up with what I've learned today:

An ileostomy repair leaves what they call a "dirty wound." I suppose that's obvious, with fecal matter right there in the hole and all. *yuck* In order to deal with that, the way they close the wound is very unusual. They stitch the holes in the intestine and drop it back down inside. Then they stitch the holes in the fascia, but they leave the wound in the skin wide open! Yes, at this moment there is a 3" hole in my side, through which I can see scary-looking guts and stuff. Ok, it's not really all that scary, but it's definitely a change from the neat, glued-together scars that were there to greet me upon waking up in the past. The wound will stay open like that until it heals up and closes on its own. I can shower with it just like it is--let the water run right over it. Wild, eh? There's never a boring moment around here.

It keeps getting better: since my large intestine has been unemployed for the last few weeks, and handled roughly before that, I can look forward to a little touch of colitis. (Sing Elton John's song, "...the girl with colitis goes by..." In other words, difficult-to-control, very watery stools for the next few weeks. If I come to visit, don't seat me on the good furniture.

Just kidding! I hope... The doctor asked me this morning if I'd had any "accidents", with a look that suggested he already knew the answer and that it would be an embarrassed "yes." But no! So far, so good, I've been able to keep things where they belong, and I'm really happy about it. He said that I would have a smaller than usual section of the intestine to collect stool, but that it would get better with time. The part that's doing that job now used to be a long way up the line, so it's not as elastic as the original equipment had become. "Increased frequency" is a relative term, though, and even if I'm in the bathroom 10 times a day that's still half what I was dealing with when there was a huge tumor stopping up the plumbing.

Well, that's more than you ever wanted to know about me, isn't it? Me, too! I have learned so much about anatomy and what is possible that I am amazed every day. Now that I've walked a bit in the shoes of the folks who have an ostomy I am humbled and encouraged by their dignity and perseverance. As for the other people I see in the hospital, they are a constant reminder of how lucky I am and how easy I have it. Frankly, I wouldn't trade with a one of them. The inspiration that I get from them keeps me going every day.

Finally, I'd like to say more good things about the staff at Memorial Hospital. I've been a guest in their facility for three extended stays now, and a host of shorter visits, and the people there have been fantastic. Every one of them, from the janitor up, has been polite, concerned, respectful and they have gone out of their way to maintain my dignity and humor. I'm going to do something nice for them when this is all over.

Cheers,

Clem

Back on the Juice

2009-06-14T10:56:00.003-04:00

Long night in the hospital. Clem woke me up at 2:30 to help him get to the bathroom and the rest of the night he spent in agony going back and forth attempting to interpret the signals coming from his gut. Things are slowly moving through but he has developed a common issue that the Doctor referred to as an ileus. Basically it means that his intestines are in shock from the trauma and are sluggish. Today he is back on liquids only and is playing the waiting game again.

Fortunately I am not playing the role of the Nazi today. He has this cute little nurse that has cracked the whip on him and given him the schedule. Walk, nap, and drink. When I woke up this morning or should I say mid morning Clem was sitting in a chair and had already walked down the hall by himself and the nurse assistant was making his bed. I think this is the first time anyone has made his bed in the hospital besides me. I could get used to that.

I am hoping that this is the last time that he has to suffer like this. These last two surgeries have been a lot tougher than we both anticipated. Hopefully by tomorrow this phase will have passed and the Doctor will come in and release him. His dressing still has to be changed which should be interesting. There are no stitches just packing in the wound. The Doctor plans to take all that out and then put a small dressing on the site which will heal by itself.

He is quietly napping now after hitting the morphine pump to send him off to la la land. He is so funny when he wakes from the morphine stupor. In the recovery room he told me that he had had brillant thoughts while under the influence of the drugs but when he woke he couldn't seem to remember them. In other words, morphine makes you think you are brilliant. Now that I think about it Clem thinks he is brilliant all the time. hmmmmmm Just one of the reasons why I love him.

So far...so good

2009-06-13T08:46:00.002-04:00

Clem here. It's early morning on the south wing, and our east-facing window is filled to bursting with all the sunshine in the world. It wakes me up every time, though Pam seems to find it the most soothing soporific ever.

The operation seemed to go well, though we'll only know that over the course of the time I'm here, the next day or so. Last night my gut had not started working yet. It's a feeling that I remember well from the last visit. Any food (a mouse-bite of cracker) or drink (several sips of Sprite) that I ate went down well, but then just sat there in my belly. After an hour or two of that, it got bored and came back up to see what was going on out in the barf pan. Vomiting is something that I'm getting good at, so it's "better out than in" as Shrek says.

This morning things appear to be going a little smoother. Over the last two hours I've eaten a whole graham cracker (3x4cm in size) and a small cup full of water. Breakfast just arrived! Add to that some chicken broth, jello, Italian ice, and a bit of apple juice.

Pam has her own illnesses going on as well. I offered to trade places with her, and she almost took me up on it! Nothing dire, just a little back pain (from the chiro-quack-ter's adjustments) and a minor infection. Give her a little of that healing energy, too.

That's about it around here. Once again, we're in a lovely room and the staff is fantastic. I've not been in many hospitals, nor for very long, but this one is the best that I've seen. I will write them a really glowing letter when I get out of here.

Thanks for listening,

Clem

Clem is no longer packing

2009-06-12T22:10:00.002-04:00

Here we are again. Different room but same stuff different day. It was a long day too. The surgery started at 12:30, finished around 3:30, and we got into a room at 8:00. It was a busy day on the surgery floor. The Doctor reported a successful mission and Clem no longer has an extra orifice protruding from his side. I for one am thrilled. I am pretty sick of people looking at us every time that thing "went off". Clem would always look at me like I was the one that had just farted and I couldn't help but look guilty.

It finally feels like we are on the home stretch at last. This is the last surgery with the exception of the port-a-cath removal which the Doctor said he would do in the office. Chemo will be over right around his birthday on September 9th.

Clem is nauseated and throwing up again tonight but not nearly as bad as before. Tomorrow we will get up and start walking the halls again attempting to revive his intestines from the shock. We are hoping to be back at home by Sunday.

The take down

2009-06-11T13:31:00.002-04:00

The Doctor has decided to repair Clem's ileostomy tomorrow at 12:30. Good news!! All looks good. A potential hospital stay of 2 to 5 days. He is ready to have this part behind him. More details to follow from the Hospital.

Tim The Tool Man has nothing on me!!

2009-06-04T23:29:00.006-04:00

I thought I would give a brief report on Clem since he has not posted since the dreaded "drain incident". Chemo started on Monday and was uneventful in that he has not experienced any serious side effects. The process goes like this: Monday morning we show up and he gets hooked up to an IV that delivers an anti nausea medication. Next he spends a few hours in a comfy recliner cuddled up with a fleece blanket having a platinum based chemical slowly infused into his blood stream. Other than the fact that his color changes almost immediately and he becomes very quiet and sleepy, no one would know that inside his body bagillions of cells are getting nuked. After that is complete the nursed hooks him up to a pump that he will wear until sometime on Wednesday which delivers a chemical called 5FU which will be slowly and methodically pumped in on top of the of the oxalyplatin. The combination of these drugs makes for a very lethal cocktail for his type of cancer.

Clem doesn't drive during chemo week, he doesn't stay awake a lot during chemo week, and he doesn't really talk very much during chemo week. I think it is a very tough head space for him. He is forgetful and somewhat spaced out. This symptom seemed to increase in severity as the weeks went by during his last round of chemo. His worst symptom seems to be fatigue. By the weekend I can see signs of renewed energy and on his off weeks he comes back to life a bit. I'm not really sure what to expect this time because his first series of chemo took place before having 75% of his liver removed, a foot and a half of his colon removed, and before he had his bone marrow nuked with radiation. It is quite amazing that the man can get off the sofa at all. But he does and he attempts to move around and drink lots of fluids and tonight he ate quite a large meal with success. He seems to be adjusting to the ileostomy and now realizes that he will still be capable of getting out and about with it.

I miss him right now. He spends a lot of time in his own head when he goes through chemo. He is so tired that he doesn't really want to have much conversation. Of course if I would have long detailed banter about rope rigging that might get him going but...that's just not going to happen. I am counting on YOU for that and YOU know who YOU are. So thanks for keeping my husband's brain busy. This week has been a quiet week on the home front. He has moved from the sofa to the man pad and maybe to the front porch a bit. Our good friend Doug Strait came to visit on Tuesday and he spent some time with Clem in the back yard doing shooting drills and adding a little auditory interest to the serene atmosphere here in Hooterville. That is the most he has done this week. Thank you Doug.

Me...well I have been a bit manic. I had a small meltdown and almost cried. Stupid stuff. We went camping this weekend at SERA which is a Caving event that we like to attend. Clem was feeling well and he wanted to see friends before starting his last round of therapy. Our really good friends Mike and Nancy Harrison encouraged us to go. It was so awesome to camp with them. They are like family. Clem seemed to have a great time and for a while there it was eerily like our old life. On Saturday night we visited with lots of different people and just enjoyed being outside in beautiful weather.

On Sunday morning we met up with our friends Benjy and Dawn von Cramon and shared a few laughs before heading to Doug's house to check out his garden full of raspberries. No one wanted to go inside so we had a picnic outside of Fricks cave while enjoying the cool rush of air coming out of the entrance. Nancy Neal, Doug and I jumped in the creek to cool off. I closed my eyes and poured the cold water over my head and for just a few minutes I felt like a kid again. I think that is what did it...the meltdown thing. I actually let go and laughed and allowed myself to feel again and laugh again and want things again. I suddenly wanted to go to Mexico to see my friends there, I wanted to dress up nice and do my hair and wear sexy shoes and have too much wine to drink. I wanted life to be frivolous for just a few minutes. I haven't wanted for myself in quite sometime now. It just has not been an option.

All of the sudden my controlled world had busted out of its box. I am not really good with that box thing on a good day much less under pressure. It was like spending the winter snowed in, getting on a plane, and a few hours later arriving on a beautiful beach. Staying on the beach for two hours and then being forced to get back on the plane and go back to the snowed in cabin. It would have been easier just to never leave the cabin. It took me a while to get back to the day by day and minute by minute thing.

So what did I do? Use power tools! Loud noisy crunch your bones up and blow your skin off power tools. It works every time. Tonight I am exhausted but better. I don't have the energy to want anything but rest and sleep. Today I chipped all the downed limbs in the yard, turned the compost pile, planted 19 new perennials, pressure-washed the siding on the house and deck, and smashed the crap out of my thumb. Good day!!! Clem tolerated the noise because he could sense I had some stuff to "burn off" but he will most likely bitch if I do this tomorrow. I think I will run my raku kiln. The power of 1000 degrees of swirling vortex flame. That should do the trick.

Wingardium Leviosa!

2009-05-28T15:10:00.002-04:00

This entry's title comes from the Harry Potter series of books. It's the spell used to make things lift up and hover in the air. On Tuesday I learned that there are other spells that are equally effective at that "magic" trick.

When they do a big operation on you, they install a drain to keep your insides from filling up with fluids. I had one with my liver, so I wasn't surprised to see one when I woke up from my colon surgery. It's a little rubber bulb with a long rubber hose on it, maybe 3/8" or 9mm in diameter, that sticks inside you through a hole. From time to time through the day it fills up with liquid (some blood at first, then just liquid stuff) and has to be emptied. It's kind of annoying, but no big deal while you're in the hospital.

By this week, however, it wasn't draining much any more and I was definitely ready to have the nasty thing out and gone. A quick phone call later and the nurse was waiting for me at the hospital. Last time, when they pulled it out, I had no idea what to expect. It turned out to be nothing too bad at all. Kind of strange, as there seemed to be about three feet of hose in there, but it didn't exactly hurt or anything as they yanked and tugged.

So I was sitting there on the table, calm and with a good understanding about the whole procedure, happy to demonstrate my unflappable cool to the nurse as she pulled the first foot or so out. I must have missed her incantation (wingardium leviosa!) but I sure felt myself lift up off the table! Pam said I screamed something unprintable and hovered about one foot in the air, with a death grip on the nurse's hand and hose. YEOW! The hose had snagged on something in there and it HURT LIKE HELL. After all that I've been through, pain hasn't really been a problem for me until that second. I was breathing like I'd run a marathon, sweating heavily, and not at all eager to continue. The nurse, bless her heart, was as calm as could be, patiently watching her hand being crushed and me levitating there.

Pam suggested that I lie back, but the nurse and I realized that I wouldn't be lying back for long once she jerked that hose again. For the second pull, I braced (mentally taking a big slug of whiskey and putting a big leather strap between my teeth like they do in the Western movies) and gave the nod.

What came out was not merely a plain hose, but about another foot or so of hose with a huge plastic thing on the end of it! Pam said it looked like a brush. I thought it was like a little flat strip with a long hole in it for fluid collection. My insides told me it was one of the longline fishing tackles they use for catching sharks in the ocean, bristling with hooks and maybe a shark or two thrashing there as well.

Once it was out it was done, so I floated back down to the table and sat there breathing for a while. The nurse disposed of the hated thing with quick efficiency and smiled as she restored circulation to her hand. It took me an hour or so to come back from the adrenaline dump. Pam sped the process considerably by taking me by the Sonic for a little ice cream on the way home.

I've been laughing at myself ever since, to think that I was screaming like a little girl at the least of the medical procedures I've endured over the past year. It just goes to show, you can't relax for a minute around here. Mad-Eye Moody said it best: "Constant vigilance!"

Men say the nicest things

2009-05-26T23:44:00.003-04:00

I am sensing a lack of communication. Thanks for the nice comments...ummmm I think.

Prevention--an ounce is worth a pound of cure

2009-05-25T19:33:00.003-04:00

Clem here. (With selected Pam edits)

Today we had a long talk with my oncologist, the primary doctor who's responsible for everything cancer-related. He's the one who resolved to cure me back when the rest of the team of doctors doubted whether I would even be treatable. The big news of the day: I'm cured!

In the foot-and-a-half of colon that they removed they found a few microscopic cancer cells, and in 3 of the 27 lymph nodes that came with it they found a few more microscopic foci. (There's a word-of-the-day for you!) We should have new CEA marker news in the morning, but we expect it to be normal--below 5. (Personally, I'm shooting for less than three.) Clear margins were achieved everywhere. The surgery was an unqualified success--another huge hurdle cleared for me.

The oncologist goes with the numbers, doing what has statistically been shown to be the most efficacious plan of treatment for similar cases to mine. The numbers call for 12 doses of chemotherapy to maximize the effectiveness of the treatment. So far, I've had 5 of them. Since today's cancer counts were non-zero, perhaps there is still an odd cell or two wandering around looking for a nice, juicy liver to set up shop in again. Further, since it's been proven that these cells are responsive to the treatments we've done so far, it makes sense to continue the chemo for the full term--another 7 sessions.

On the one hand, I'm sure not looking forward to a summer of chemo. On the other, it really didn't bother me all that much, and we have an opportunity to "kick it while it's down" and really put any stray cancer cells out of their misery. So, starting on Monday, I'll be back to my "week on/week off" chemo regimen. I'll do it through June, July, and August. In the midst of that somewhere I'll have the ileostomy reversed (or possibly just wait until the end and have the portacath taken out at the same time.)

With that, all the big stumbling blocks are out of the way and I'm set to walk away from this thing "free and clear." Though it has taken a year, and not been fun by any means, there have been many good things to come from this experience. My bond with my fantastic wife is more solid than I could have ever imagined one could be. There were times, before, when I ~~thought that I felt~~ was out of mind mind and felt ready to walk away from her. There were other times when I chose to trust her, even when I ~~knew~~ somehow got deluded into the crazy notion that she was doing something ~~hurtful to me or wrong or mean.~~ that only an idiot could have interpreted as--barely possibly--slightly insulting or some kind of silly, misunderstood thing like that. She has repaid that trust a thousand times over and humbled me in the process. Love is not easy, but it is worth every challenge when it's with the right person. She's the one.

Thanks for listening. You have all helped me to make it through these trials, and I appreciate your caring more than I can convey with these few words. We'll keep the news fresh as it happens over the next few months, through these last few small steps.

Clem

The sounds and smells of home

2009-05-22T09:45:00.002-04:00

I woke this morning to the sounds of my grandson babbling and the birds singing. I had a brief thought that I would sneek out of bed and let Clem rest more when I realized I was the only one in the bed. Clem had been up twice. Once to nibble some breakfast and another time after crawling back into bed with me and sleeping more. I don't remember any of it. Like many women I need sleep more sleep than Clem requires. I think it is because he can dive down into the restful part of right from the start. I don't reach that point until about 3 a.m.

I can tell that Clem's attitude has changed dramatically today. The hard part is over and now the lazy days of recovery begin. We both had begun to feel like our brains were drying up the last few days in the hospital. It is good to be home!

Home is where my heart is and my bed and my garden and my stuff and my own toliet and I can walk around naked if I want to

2009-05-21T22:06:00.004-04:00

We made it home! Clem walked down the hall, rode the elevator carrying his backpack, and walked out of the hospital!! He is tired tonight but feeling like a real person again. No more tubes, iv's, or injections in the middle of the night. he has bruise all over his tiny little fanny from the heparin injections, a big hole in his arm from the PICC line, an even bigger hole in his belly where his ostomy is located, and last but not least the infamous grenade drain came home with him. We were hoping that the Doctor would take this out. He even teased us with the thought but it is still draining "stuff" from his abdomen so I guess it is for the best.

He is thrilled to have clothes on. He started to score some of those sexy hospital gowns just for lounging around the house but sometimes a good thing can be beat to death. I think we'll just save those for special occasions.

We are lying here in the bed smelling the fresh air of the country and watching the lightning bugs spark outside our bedroom window. It looks like a jungle here everything has grown so tall since we have been gone. Tomorrow I get to pull weeds!! Yeah!!!! Dirt! Clem will probably just piddle. Resting when he needs to and motivating around the yard and the house. I think he is up for visitors if you want to stop by. We'll be here but I can't guarantee that he will be awake.

I want to thank everyone who has been following Clem's progress and let you know how much it means to both of us. Your comments encourage us and help us to know that we are not alone. Today we got a comment from Ann who is also going through the same type of treatment. I am sure that Clem would love to meet you and talk or correspond by email. Contact me (Pam) at akins.pamela@yahoo.com and I will hook you two guys up. I am assuming that you live in or around Huntsville and we are frequently there. I hope that something on the blog has been beneficial to you even if it is just to read about someone who is going through the same thing.

Sleeping in our own bed tonight!!!!

2009-05-21T09:01:00.005-04:00

The Doctor came in this morning and gave us our release!!!! We have to wait until after dinner so we are sure that he is not going to digress but that is not going to happen. Dr. Stanley warned Clem about becoming dehydrated at home and all the dangers that go along with it. He is also still at risk for blood clots so walking frequently is a must. He has been receiving daily heparin shots here in the hospital that will end with our stay. The good news is Clem's platelet count is 133,000 today which is the highest it has been in months. The bad news is that puts him at higher risk for clotting.

His electrolytes are also a concern because of the way his plumbing is connected so the Doctor wants him to drink at least three Gatorade drinks a day. OMG of all the things he is having to deal with now this pisses him off the most. He does not like gatorade or powerade or vitamin water or anything else but his favorite which is weak tea. There are lots of good things about type A people but change is not one of their better skill levels. Once he finds something that works for him Clem will continue with the course of action for years and years and years until something new and definitely better PROVES itself to him. I can already see that the Nazi is going to have to deal with this issue.

Walking and hydration is our new plan but for today a little more rest and a lot of packing. I hope to have all of our things in the car by the time we are released today so our exit is swift and easy. I may even run by the house and pick up something nice for Clem to wear out of the hospital. I want him to feel proud of himself today as he leaves.

Show me the way to go home

2009-05-20T22:08:00.005-04:00

I've been having a recurring dream all my life. This week I have had it over and over. It goes something like this: I am in college again and it is finals day. I am unprepared for the test and trying to get to the classroom to cram a little before hand. Suddenly I forget how to get to the classroom and I search and search lost in areas that I recognize but never being able to find my way.

We have had such crazy sleep patterns this week that it feels like I have had this dream three or more times in a night. I decided to look for an interpretation of the dream online. I discovered that dreams of this nature are common and may be recurrant throughout someones lifetime. It is universally agreed upon that these dreams are indicative of feelings of vulnerability and feeling out of place. Well, there you have it! It is time to go home!@!

Clem is ready and so am I. I am hoping that the Doctor will dismiss us in the morning and that we will not have to stay another day in order to complete his nutrition therapy. A specialized team has to remove his PICC line and it took more than 24 hours to get it inserted.

The room changed atmosphere over the course of the day. As Clem improved more and more the room seemed more and more claustrophobic. We miss our house and especially our own bed. We stepped outside a few times today just to get some fresh air and I think it just made us a little more homesick. It was easy to be here when he needed therapy but now he is ready and we are getting anxious to leave.

Hopefully my next post will detail our plans of going home tomorrow.

Around the Corner

2009-05-20T14:14:00.003-04:00

2:15 Looks like we turned a corner. The Doctor put Clem back on solid food today and he has had two meals with excellent results. I think the Doctor will consider sending us home tomorrow if all goes well today. He is walking well, getting up and down on his own, and today we took an actual shower. He is using no pain medication and would be sleeping well at night if we could keep everyone out of the room.

We have been asleep for the last few hours trying to catch up from last night. We were up at 4:00 and then every hour on the hour until around 9:00. Jessica and Adley stopped by with some supplies and a visit then around noon we just crashed after the shower.

It appears to be a beautiful day here today and we anxious to be outside again. Right now I am fantasizing about sitting on our front porch in the hammock. Maybe tomorrow.

Update

2009-05-19T22:16:00.002-04:00

10:15 The tpn has been started and he is tolerating it well. Had a nice visit with Mike and Nancy Harrison who came just when Clem was feeling better. It was great to have laughter in the room again.

The nutrition runs 24 hours and is switched out every night at 9 p.m. I think by tomorrow he should be back to his old self.

A little bit of progress

2009-05-19T19:57:00.004-04:00

8:00 p.m. Looks like a new man sitting in the chair munching tentatively on some pita chips. He woke from a four hour nap, finished four bags of IV fluids today, and his stomach feels like it might be emptying. I think the Doctor was right. Clem was overdosed on imodium.

After this type of surgery the Doctor attempts to regulate the balance of in and out. The use of Imodium is pretty standard in that treatment. Obviously Clem needs a less aggressive dosage. The tpn treatment is still going to happen for a day or two because as my posts have shown a little progress can turn around fast either way. We both have a good feeling that we are on the right track now though and are again hopeful that we might make it home in a few more days.

Waiting for the feast to begin

2009-05-19T17:17:00.003-04:00

5:15 p.m. Clem has crashed. It has been another long day without nurishment. He has had a huge volume of fluids from his IV but only sips by mouth. He is so weak right now. The PICC line was easily and quickly inserted around 2:00 p.m. and I was pretty frustrated with their response until I learned that the nutrition therapy will not begin until tonight at 9 p.m. I'm not sure why this is the case but all the tpn starts at the same time each night with each patient. ???

After that news we just hunkered down and attempted to rest until that time came. He has not vomited today but he has been suffering with the full belly discomfort. He said earlier that he thought that some thing might actually be making it down the pipes now but he was unsure as this is a first for his body to experience.

He looks so thin in his face right now and it breaks my heart to see him go through this even though if you ask him he describes it as not being so bad. I think this is the toughest thing he has gone through so far even the liver surgery.

He is off all meds. No pain drugs, no nausea drugs, no imodium, nothing. He does however have tubes running rampant out of and into his body. I know it has just been a week but he looks like he is starving right now. I can tell such a difference in his body from a week ago even his beautiful muscular legs have atrophied.

On a different note I know how fast this man can turn things around and before I know it he'll be hanging off of something tall and I will be trying to catch up.

Plan B

2009-05-19T11:38:00.009-04:00

11:30 a.m. Long night long morning. Clem woke very early looking haggard and uncomfortable. Not so much pain anymore just hurting from being in the bed and incapable of getting a satisfying position and just too damn tired to walk down the hall right now. We had the x-rays this morning which did not reveal anything alarming or significant so the Doctor is going to wait and see what happens over the next few days. He suspects that the combination of the high doses of Imodium and the tylenol #3 may have stopped his small intestines from functioning. So all of that is being held, his IV fluids have been pumped up to 500ml per hour, and he is going on the tpn nutition program to keep him from starving over the next 2 or 3 day waiting period. The Doctor is confident that this will resolve itself without more surgery.

In the meantime Clem and I are patiently waiting in our room for the PICC line team. They are a specially trained group of nurses who do this daily and apparently they are very busy because the order has been in place for what seems like a long time. I have yet to be a bitch to anyone yet mostly because it really hasn't been necessary. Everyone responds here so positively but we are both exhausted and Clem literally looks emaciated today and he needs nutrition!! So my patience are beginning to wear thin. Fortunately Clem is catching up on the sleep that he missed out on last night. He asked me to crawl into bed with him for the first time this morning so that he could sleep better and we both crashed for a few hours in what was a blissful rest for me. I am only up now because I wanted to let all his family know what was happening and that progress is slowly being made. He is taking in a few clear liquids by mouth now but he is very guarded about the quantities.

It looks like a beautiful day outside. Hopefully by the end of the day Clem will be feeling much better and we will be out walking again. I scoped out a new place for us to walk last night. A covered bridge that leads from the hospital to the adjacent medical building is like being outside but has the benefit of hand rails and a smooth surface so we can roll our new best friend the IV pump and pole. I suggested this morning that we put a hat on top of the pole and and drape a hospital gown around the pump for a more human look. Yes, I am bored. If I ha a needle and thread up here I would have these curtains down and entirely new costume made for the thing.

I'll update again after the PICC line team comes and goes.

Another step back

2009-05-18T19:33:00.004-04:00

7:30 p.m. It looked pretty good there for a while and then Clem started violently vomiting again! Not just a small amount but an entire days worth of fluid intake. 2250ml to be exact. We both decided it was time to call the Doctor and discuss the possibility of an occlusion and he agreed that all was not well.

The new plan. In the morning Clem gets a PICC line and will be started on TPN therapy which I believe stands for total patient nutrition. He basically has not held anything down since last Tuesday. His IV fluids will be running in this line as well. He has been switched back to clear liquid fluids and tomorrow he will be getting x-rays of his abdomen to see if anything noticable reveals itself.

What are the possibilities? A kink or some type of occlusion in his small intestine or his intestines are just slow in coming back to life. Most of these complications work themselves out within a few days but it is possible that the surgeon will have to go back in and straighten something out. For now we wait.

As long as Clem does not take anything in by mouth he does not experience nausea or much pain. He is hungry but nothing else. After throwing up this afternoon he felt much better and now we are just hanging out waiting for the plan to begin to unfold tomorrow. The Doctor came back by this afternoon to check on him while he was taking a break from one of his surgeries. This is exactly the type of response that we have received from everyone here at the Hospital. We are so lucky that we chose Memorial Hospital for our treatment center. It helps to stay calm in the face of possible complications when you know that everyone including your Doctor is paying close attention to you.

Grits do the trick

2009-05-18T08:50:00.004-04:00

What a gorgeous day!! The sky is clear and we have an amazing view of the city from our room. Clem does in fact look renewed and last night was a restful night with very few issues with pain or nausea. We were up and around at 4 a.m. strolling in the halls and letting things settle then we were back to bed without any pain meds. Looks like the tylenol 3 is going to do the trick!

The Doctor was in this morning and was encouraged by his turn around. We'll go home tomorrow if he can eat with success today. Right now he is munching on a blueberry muffin and some down home hospital grits. He is really starving so as soon as the rest of him cooperates eating will be no problem.

Today we also change out all his dressings ourselves for the first time. I don't see that being a problem with exception of any pain that it might cause. I hate hurting him. I will update more later just wanted to let all the family know that things are going better. He wants to walk down the hall now so off we go.

A well deserved rest

2009-05-17T22:37:00.002-04:00

10:30 p.m. Another long day. Clem was very sick this morning but the new plan seems to be working. He is still taking very little in but it is not coming back up any more. He has been very lethargic today and we have spent most of the day in silence. The phenergan this morning kicked his butt and put him in a strange place. I think he is detoxing from all the pain medicine.

Tonight we are going to start using tylenol with codeine for the pain. We learned last time to try the meds out at the hospital before going home. This gives you an idea of its effectiveness ahead of time. His pain level has actually improved. Most of his discomfort is coming from processing his food and trapped gas. We have discovered that walking helps his food to find its way into the correct pipe. So we have spent lots of time in the hall.

I am really hoping that by the morning Clem will be renewed both physically and mentally. I had to coax him out of the bed this evening at 9:00 to give him his daily bath. This says alot about where his head space was today. I realized today that Clem and I both expected him to make recovery records. His liver surgery went so well that we left the hospital in six days. I think we both expected the same thing here. We were told that his stay could be anywhere from 6 to 12 days and we planned to be going home today or tomorrow. So we are regrouping and trying to relax and let as many days go by as necessary. His body has been through a great deal surgery, chemo, radiation and now another major surgery. I think a few more days is well deserved.

The Long Day is Over

2009-05-17T15:36:00.005-04:00

I've been working on this photo journal for a few days now in the quiet times when Clem was sleeping. I've never done one of these before so there are imperfections that I hope to someday work out. Maybe I will even read the help menu. Anyway, I have entitled this The Long Day is Over because of our recent experiences and I have included music of the same title by Nora Jones. Hope you enjoy.

We seem to have turned a corner now. He is resting well with the aid of "Sargeant Valium" (Clem's name for the drug) after eating most of a bowl of potato soup and some peach cobbler. The biggest indicator that things have turned is his desire for food. He has actually said wow! that tastes good!

Hopefully tomorrow will bring the exit of the drain and a possible discharge from the Hospital if he continues to improve. He is getting up and down great, walking fine, and is handling the care of his ileostomy. His fluid balance is his last obstacle and I have a feeling that we are on our way to resolving this too.

Blow up owls do not keep the creatures away

2009-05-17T11:49:00.009-04:00

I can't believe it is noon already. This morning has been a whirlwind. I woke to find Clem literally dazed and confused talking nonsense to the nurse about his dreams and struggling to keep both eyes going in the same direction. The breakfast tray had already come and gotten cold and she was urging him to eat. I had not heard any of this. I am a night person and I laid awake last night for hours after Clem crashed so I was sleeping really deep this morning.

Jumping from my little cot I felt guilty that he had been in this state alone. It didn't take long for me to realize that he was pretty much bonkers. I took a deep breath and tried to slow myself down and slowly fluffed him and washed his face until he agreed to attempting the cream of wheat. About two hours later he had consumed almost all of it along with intermittent sips of tea. The Doctor came and went, the nurses came and went, the lab people came and went, and eventually the cream of wheat came and went.

Clem seems to be going through a big adjustment phase inside. His ileostomy put out 2400cc of fluid yesterday despite the Imodium that was prescribed to slow this down. Today the medication will be doubled. He vomited at least that much and took in nothing. His IV fluids saved him yesterday and today the Doctor has increased those again. The plan is to take him off the dilaudid, keep a back up iv morphine if needed, and use valium and zophran. Zophran is an awesome anti nausea drug and he has used it throughout his chemo and any other time that he has experienced nausea. It is very effective and does not have all the nasty side effects of phenergan.

The Doctor thinks that Clem is reacting to the complex cocktail of drugs and that what he really needs is something to stop the muscle spasms that he is having in his gut. Everytime he has a spasm it causes terrible pain in his incision area, every time he has this pain he starts having nausea, he stops eating and drinking with the nausea and this causes dehydration which perpetuates the nausea etc.... So he is going off the drugs and onto valium. He will at least be a happier camper. This morning in the middle of his phenergan stupor he warned me that he was pissed off about everything. The phenergan was making him have crazy thoughts and the air around him was irritating him. It is probably fortunate that he was exhausted because he may have ripped the curtains down otherwise. I just tried not to stimulate him any more than necessary and encouraged him to sleep until all the symptoms passed.

Unfortunately barfing up all his breakfast has calmed him down alot. He seems to be resting comfortably right now and I am hoping for a turn around soon. I actually had a moment yesterday where I wanted to sit in the corner and cry but fortunately the craziness of the day didn't allow this option and soon it passed and I was back to the regime therapy. I hope that Clem will trust me after this episode. Everything that I have coaxed into his body in the last 24 hours has come back up on him. Wearing the Nazi hat has really sucked.

Despite everything that has been going on Clem has been walking the halls constantly and sitting up in his chair. He really wants to be better. Yesterday we went back out to the little balcony over the garden and watched the rain. Clem spotted a huge hawk sitting on a railing right beside a fake blow up owl that had been duct tapped there to deter creatures. (Note to self...that doesn't work!!!) We were amazed at the beautiful creature and spent a good ten minutes just watching it hoping that it would fly. Turning to come inside I could see that this had renewed him and given him the extra energy he needed to do a few more laps down the long claustrophobic corridors.

The bright spot has been a little hard to search out over the last few days and fortunately we sense when the other one needs a positive thought and one of us jokes or plants a new thought for focus. This morning I told the nurse about Clem's trip to the North Pole. She asked him lots of questions about it and of course marveled at his adventurous spirit. For just a few minutes you could see him reliving a bit of that time and it took him away from the black hole he has found himself in lately. "I love you sweetheart thank you for taking care of me" is all that it takes for me. Fortunately he tells me this everyday and it fuels me to keep the Nazi hat firmly on my head.

YUK!

2009-05-16T19:21:00.003-04:00

7:30 p.m. After a long hard day we have a new plan for tonight and tomorrow. The Doctor put Clem back on his IV fluids and after a bag and a half he finally has color again and is beginning to pee. Dehydration sucks. I think he may be having trouble with his pain medication (dilaudid) because all this started when they changed him to this late yesterday. So we are going to try to keep him on the nausea medication throughout the night and use some alternatives to the dilaudid. There are bound to be a few hard days and I am really glad that this one is almost behind us.

The Tennessee Two Step

2009-05-16T09:22:00.003-04:00

9:30 a.m. Looks like we are at the point where we are taking the two steps backward at the moment. After a energetic start Clem has become nauseated again and has been throwing up quite violently. He is drugged now and after an hour of struggling he is back in the bed asleep. Our plan is to let him sleep as long as he can and then get up an try again. So far today his output has been way more than his input. The Doctor visited and gave him some drugs to slow down his ostomy output but his vomiting is very concerning. His IV's have been slowed way down so I would not be surprised if some of his nausea is from dehydration. We are just going to keep trying different ways of keeping fluids in him until something works. If we reach a critical point the staff can always crank the IV fluid back up and give him some help. Maybe they cut it back too severely yesterday.

Clem is very compliant. He sticks with the plan even though there are speed bumps along the way and this is definitely one of those speed bumps. Even after violently puking he got up, bathed, changed his gown and sat in the chair. All of those things are still critical. He is an awesome patient because he truly wants to be better and willing to do whatever it takes.

I know I blog about details that some of you may not want to read. I do this in the event that other colon cancer patients or caregivers are interested in our story and are looking for useful information. I have read several accounts on the web and found that I wanted more details so I could know what to expect and how to prepare. I hope I don't gross you out too much.

As you can tell from my post, this morning would not be a good time to visit. Like I have said before things can change drastically within a moment and I am hoping that after he wakes up that we will be doing the one step forward thing again. I'll keep the blog updated often in case you want to visit this weekend. We will definitely be staying until Monday maybe a little longer depending on the whole input/output thing. Say a little prayer for the man this morning he is having a tough day so far.

Up at the crack of dawn

2009-05-16T05:56:00.005-04:00

5 a.m. awake for the early morning maintenance of the tubes and emptying of the drains. I found bananas last night in the cafeteria and Clem has been slowly munching one and attempting to get down fluids. I have never seen him this cautious with his eating. I continue to offer him all sorts of soft things like yogurt and ice cream and soup but nothing seems appealing to him yet. I am hoping that this may change today.

The staff continues to change his pain meds in preparation for going home. He does seem to be hitting the pump less but really pays the price when he does not keep the pain in check. Everything is a constant evaluation of too much or too little. Balance is our goal.

We have been up this morning already walking the halls. Early is better here because in about an hour the atmosphere begins to take on the appearance of a small city coming to life. Dodging carts and rushing staff makes the morning walk more hectic than restorative. We found an open door to an outside balcony and were able to step outside and check out the view of the city still asleep. It felt good to breathe the morning air.

Clem has moments of boredom throughout the day and he checks his emails often. It would be great if you could contact him by email. Phone conversations take a little more out of him. He can pick the best time to return emails and texts in between all of the many activities that go on here.

Today is Saturday and I am horrified at the thought of going home with Clem just yet. I am not sure that I can help him manage his pain and nausea and fluids. The Doctor warned us yesterday that 20% of patients are rehospitalized for dehydration after undergoing this procedure. I can see why. It appears that his body is having to learn an entirely new way of operating and Clem continues to be amazed at the new and/or false sensations that he is feeling.

We both had a good nights sleep. The staff seemed to leave us alone and just peek in at us without flipping on the light or making a bunch of noise. Clem has turned on an old Western so he must be wide awake. I think I'm going to crawl back in the back and go to my happy place for a while before all the fresh coffee filled day shift comes steam rolling in.

Comfort Food

2009-05-15T19:24:00.003-04:00

Today was a sunshine day! We are fortunate to have a very good room this time both in size and the fact that we have an entire wall of windows. This morning we woke with a new attitude because sleep was plentiful and pain was subdued. Clem actually woke me at 4 a.m. to help with a few things and then to talk. He also was hungry and asked for some chicken noodle soup all positive signs in my book. My conversation didn't last too long because I crashed in mid sentence but around 5 a.m. the daily grind began around here and I slept in little 30 minute spurts until around 9 a.m. Clem on the other hand returned text messages and surfed on the computer in the wee morning hours.

Breakfast, walking, and bathing took up the next few hours and then we were met by the ostomy nurse who conducted about an hour training with us on how to care for and replace all the "gear" that he will be wearing for the next six weeks. Clem sat in the chair for about an hour during the training and afterwards I actually got to bathe and sneak downstairs for some brunch. When I returned I found both the Doctor and a few family members lined up to see Clem and wish him well. The Doctor again was very positive and mentioned sending us home sometime this weekend. We also got a surprise visit today from our liver surgeon, Dr. Charles Portera, who is our hero!!

Clem's Mom and sister came for a few hours today from Huntsville and we had a wonderful visit with them. His family has been very supportive and loving and it has meant so much to both of us. This evening we both crashed for a few hours of sleep which was so restorative for me. Clem on the other hand does not feel so well right now and I think he may have over done it a bit. Food is not his friend just yet and he has been having more nausea and just a bit of vomiting. I think the balance of food/fluids and output is going to be the real challenge for a while. The Doctor is weening him off his IV fluids so he can begin training his body to consume large amount of fluids.

It is very frustrating to watch the hospital food come. He consumed more of the liquid diet than any of the solid food they have brought him mostly because it looks so disgusting. I think that we should force hospitals to ban serving their patients turnip greens unless they actually ask for them. When you were home from school sick did your Mother ever bring you turnip greens as a comfort food? No of course not she made chicken soup or potato soup, milk shakes, yogurt, or maybe tomato soup and grilled cheese...never turnip greens. Greens are categorized in my book as a preventive food not a recovery food. You eat them when you are healthy to stay that way because that is the only time you can get them down. Sorry ranting again!!

This evening as I sit here writing I am remembering being in this place before. The place that is slow and steady one step forward and sometimes one step back. I am concerned for the first time about Clem loosing weight because he is having such difficulty with eating. I am trying to center myself and remember that it is still really early in the game and that this can turn around fast. We have been very focused on Clem maintaining his weight. He has actually gained about five pounds over the past few weeks while off treatment and in anticipation of this phase of adjustment. We read when he was initially diagnosed that 40% of cancer patients die from malnutrition and we decided early on to do everything we could not to add any numbers to this statistic.

It is 8 p.m. and the lack of noise in the hall indicates that the shift change has taken place and the floor is settling down for the night. I can see the lights of the city beginning to spark from our windows and I am wishing that they were open so I could smell the scent of fresh rainfall in the air. This place is very foreign to me. Clem and I live with the elements. Our windows are open at every opportunity and our heat and air conditioning are last ditch efforts for comfort instead of the norm. I am unaccustom to a man made environment and when it is still and quiet here I become aware of my lost connection with nature.

It is these rare quiet times that I am able to regroup and remind myself of the very few things that we need to do in order to survive this. My experience so far tells me not to think too far ahead that it will make you crazy and cause you to loose focus and become afraid. So I am now watching him rest peacefully and reviewing all the events of the day sorting out the information that is important for his recovery.

Being helpless is a deep black hole for me. I attempt to avoid this feeling by having a plan and implementing it daily. Sometimes I drive Clem crazy doing this but he does recognize that it helps me to maintain my sanity. Right now my plan involves patience. I possess very little of this quality naturally so I have to work at finding activities that allow me to at least appear patient. I am not his primary caregiver here. He has a staff of 15 professionals at his disposal at any given time and even though I jump in to help most of the time I am just a cheerleader. I think that is why I blog so much at the hospital because I am trapped in a small room and my brain can be very busy while blogging.

I think it is time for me to go and forage for food. Clem appears to be resting well and my tummy is reminding me that brunch at 11 a.m. was the last time that I addressed this issue. Maybe if I am lucky they will be serving left over turnip greens in the cafeteria. YUM!

Good news at the end of a tough day

2009-05-14T22:01:00.003-04:00

10:30 p.m. and we just finished our fourth walk of the day. It always amazes me how fast things can spin on a dime after surgery. Clem is getting out of the bed on his own, his catheter will come out tomorrow, his GI function seems to be working, and the nausea and pain is now in check. I am anticipating a good nights rest and more improvement tomorrow.

The Recovery Nazi

2009-05-14T09:45:00.008-04:00

It is 9:45 a.m. and Clem is finally calm for the first time in about 12 hours. The charge nurse came and supervised his care this morning which proved to be our salvation. His ostomy bag began leaking again this morning around 3 a.m. but we opted to do the best we could to prevent major catastrophe and call upon experts in the morning. That proved to be a good strategy because not only did we get much more experienced people but we got special gear to accommodate his particular problem. Susan was very nice last night but competence and congeniality are two totally different assets. I think right now we'll stick with the competence.

The nurses this morning really knew their stuff and basically made sound suggestions to the Doctor to alleviate his problems. His surgical dressing and his ostomy bag are now pristine and the drug combination is doing the job. I have closed the blinds and fluffed his pillow and he is totally out. I felt myself take a full deep breath just minutes ago and realized that I have been essentially holding my breath all night long. It is hard to witness suffering.

Today we will sleep and hopefully at some point attempt to get back on our schedule of walking and eating. He can eat anything he wants and is hungry but the pain and the vomiting have stolen his apetite. It is very important for him to take in lots of fluid because his ileostomy execretes much of the liquid that is normally absorbed by the body. Here in the hospital he has IV therapy to compensate for this but at home he will have to do lots of fluid.

We have learned that the hospital stay is a training ground for what must happen at home. It is important to begin forming your recovery regime right from the beginning. The steps are small at first but the important thing is to burn and imprint a daily schedule in your mind. Your body does not always want to cooperate but as you slowly receive positive feedback from the activities it becomes easier and more willing. My job comes at the beginning. I am the Recovery Nazi.

The Recovery Nazi makes you get out of bed, makes you walk further down the hall than you want, offers you drinks every 15 minutes, repeatedly reviews the bad effects associated with getting a blood clot, evaluates the staff to see who are the smart ones, fields calls and tells friends and family not to come visit so you can rest, holds the vomit pan, and repeats over and over to breath slowly in through your nose and out your mouth. Initially I thought Clem was going to punch me a few times but now that he has gone through one major surgery he too understands the importance of the regime.

Most of the time being a Recovery Nazi is just like being a Mom but occasionally it reaches a whole new level a place where I have never been. Last night was certainly one of those times. I wanted so bad to curl up in the bed with him and comfort him but touching him was just out of the question. I just held his hand and punched the morphine pump everytime I felt him grimace. He would nod off for minutes at a time and then wake to tell me how much he loved me and that I should get some rest. Even though I am exhausted and ache everywhere this morning I feel that it was a small price to pay for such meaningful moments.

The longer I live the more that life reveals little surprises. You would think that a diagnosis of cancer would offer only a life of fear and anxiety but instead I have found the true beauty in marriage that we all thought we would instantly receive when we picked out our china patterns and said "I do" as young adults. It is a wonderful gift and it has infused my thoughts with an entirely different outlook. As I held Clem's hand last night I remembered our vows and found comfort in the words..."in sickness and in health".

Life is an unpredictable friend and it has not been that long since I was in the hospital bed and Clem was carrying my catheter bag down the hall. No one prepares you or could even convey to you the intimacy and love associated with those moments. Young people believe that love is the happy ending stories that you see in chick flicks but the truly beautiful side of love sometimes wears a disguise of ugliness.

Last night I was with Clem as he fought through one of the worst nights of his life. Experiences of this nature creates a cement in a relationship that is not easily broken. I do not feel sad. I do not feel cheated by God or life or by cancer. I only feel lucky that in the temporary scheme of things I have been able to recognize and embrace at least some of the meaningful moments when they have passed my way. Do not feel sorry for us we have more than anyone could imagine and our cache of treasures grows larger day after day, night after night, minute by minute. This morning as I lay down to rest my wishes will be for all of you to be as satisfied as I am right now.

The Calvary

2009-05-14T00:49:00.004-04:00

It didn't take much to get the Calvary to come. Our nurse Susan took care of everything. After the third call concerning his surgery dressing and his pain level she mounted the charge herself by calling all the pertinent Doctors for new orders. The epidural was disconnected and a marvelous morphine pump was initiated. Clem was having so much pain that he had begun vomiting so she also shot him full of phenergan. Susan gave Clem about an hour on the pump to get his pain down and then had to change all of his surgical dressings and his ostomy bag because it had leaked everywhere.

It was an awful event. Clem was writhing in pain as all the tape was removed from his tender incision but he held my hand and we hit the morphine pump every eight minutes together. It took her about 45 minutes to complete the procedure and afterwards he was exhausted. He never had this sort of pain with his liver surgery. I suspect today was a series of events that built on each other and started with his epidural becoming ineffective for some reason. When the pain started so did the nausea and when the nausea took over and the vomiting began it intensified the pain until it was out of control.

Right now it is 1 a.m. and we are waiting for the nurse to change his IV bag so the alarm will stop and we may be able to actually sleep some. I am so keyed up right now that I may not be able to rest. I can't believe that the morphine has not put Clem to sleep but he does seem more relaxed now. He has been plagued with the hiccups today and you can imagine how that feels. They have been waking him up in his sleep.

Tonight I will say a prayer of thanks for Susan who geniunely cared about Clem's well being and went the extra mile to make him better. I will also mention the trash man who waited patiently for Clem and I to pass him in the hall and offered Clem a wish of speedy recovery and a heads up on the basketball game tonight on the tele and last but not least for all of you who allow me to vent my frustrations and fears in the early morning hours.

NED

2009-05-13T21:58:00.005-04:00

Sorry about my previous rant. It is a coping mechanism that Clem and I refer to as "sick humor". Whenever things get really tough we have a tendancy to cope by making humorous and often sick jokes/stories. Clem has had a tough pain day and along with all the walking down the hall he has had his share of nausea too. It is really hard to watch on the sidelines when all you can do is be encouraging and rearrange his sheets.

Tonight has been especially hard. His GI tract seems to be working again however his epidural is not really cutting the pain. The nurses can't give him oral meds along with the epidural so he is having to just tough it out until the anesthesia dudes show up in the morning. Everyone here has been really helpful and responsive but if he can't find sleep soon I am going to call in the calvary. I can't stand seeing him suffer like this.

The Doctor was very positive this morning about the outcome of the surgery. It appears that Clem is in a state referred to in the medical field as NED which is an acronym for no evidence of disease. During surgery the Doctor searched extensively for other signs of disease and discovered nothing. He does believe however that the pathologists will find cancer in his lymph nodes. It is not a major factor in determining his cure rate it is his liver that will eventually determine his long range survival rate.

Right now NED is good enough for us. Pain free would be a welcome state too. Some days are minute by minute and today has been one of those days.

Praise the Lord and pass the ammunition

2009-05-13T17:52:00.007-04:00

It is a good thing that yesterday was chill because today was not!! I was right about the nurses not fussing over Clem so much this time. Instead they walked in the door early this morning and told him that getting out of the bed, sitting in the chair, and then subsequently walking down the hall four times today was on the schedule. He had had a good nights sleep and probably had some of yesterday's drugs in him when he pleasantly consented to these tasks.

So around 8:30 this morning we disconnected or rearranged all his tubes and got him to the side of the bed and into the chair. He only made it about five minutes but was willing to give the walking a try about thirty minutes later. He was quite proud of himself and even taunted the other patients in the hall attempting the same exercise. His colon surgery has a high risk of blood clotting so he is receiving daily shots of blood thinner, is wearing circulation stimulating devices on his calves, and is being forced to walk down the hall in order to prevent this complication. So far we have made two of the four walks without fainting or puking but the last little stroll brought on some pretty serious nausea.

Not many things make you feel as bad as being on the very verge of vomiting (VVV) except being visited by a hard core southern Baptist Preacher while fighting off VVV. That is what happened today. It was really quite surreal. We had met him a few times but weren't really sure why he came by to visit except for the possibility that we resembled some sinners he once met. Anyway, he introduced himself and inquired about Clem's condition and of course as everyone has done lately described in detail his and his mother's experience with their colon cancer surgery. She is dead...of course.

I think he could tell by our lack of response to his story that it was time to change the subject so he immediately began to review all the horrible events that had taken place in the last 24 hours in the Chattanooga area. First there was the close encounter with the small child and the child molester in the RV at the Ace Hardware. Second there was the elaborate story of the woman who was almost abducted by the man who had let the air out of her tire in order to trick her into letting him in her car. His briefcase which was later found in her trunk had contained knives, duct tape, and rope which by the way sounds a lot like my purse or the bag in the back of Clem's truck. No one knew about this story and it would not be on the news because the owners of the mall were keeping it hush hush so as not to disrupt shopping. He was passing the story along so that we could all be aware of the horrible crime happening just outside our doors.

Then just when I though he might be getting the YOU ARE ANNOYING THE CRAP OUT OF US SIGNAL from both Clem and myself he goes into his third story which of course was attached to his stay in the hospital with colon cancer. According to Brother Bob there was a patient across the hall from him who refused to get out of bed. After three days the Doctor threatened to fire the male nurse who could not get him to cooperate. The nurse proceeded to be more aggressive with his attempts and the patients replied that he could give 38 reasons for not getting out of the bed. With this statement he reached under his pillow and pulled out his 38 revolver and threatened the nurse. Of course the nurse did not call the Doctor but instead sought the advice of Brother Bob. He quickly suggested that the nurse drug the patient heavily so the two of them could retrieve the gun from his possession. Which is what they did! AMEN HALLELUJAH!!

With that Brother Bob said his exit prayer and left to go spread the good word to others in need of apocalyptic information. Clem and I just sat and looked at each other for a moment after the the door finally swung shut. I was feeling sorry for other patients he might be off to visit who might be in need of a cheerful thought during their recovery. Clem just turned, looked at me solemnly, shook his head, and said PRAISE THE LORD AND PASS THE AMMUNITION!!

You couldn't make this stuff up!

A good plumber knows how to improvise

2009-05-12T20:18:00.003-04:00

I must be getting better at this because today was a pretty chill day. Of course I am not the one who got their insides replumbed. As a matter of fact I sat around reading a book and chatting with my family while Clem underwent a three and a half hour surgery to remove the tumor in his colon. The Surgeon was very positive about both his performance during the operation and his long term outcome. He has a temporary ileostomy to give the section of his colon that was resected a rest during the healing process and in six weeks the Doctor will perform a minor operation to drop it back inside. Surrounding lymph nodes were also removed and sent for biopsy to provide more information concerning the course of his disease.

Right now it is 8:30 p.m. and he is resting quietly in his room on the surgical floor. We have a much improved room from the last time and I am hoping for a good nights sleep for both of us. His operation today was not as invasive as his last so I think the nurses will fuss over him less during the night. Tomorrow will be a big day because he needs to sit up asap and eventually beginning walking. Getting up and moving around prevents blood clots which is a complication that we would like to avoid. The first time out of the bed is really hard though.

There is not much more to say except thank you to all who have called today. I will keep the blog updated while we are here or until Clem feels well enough to make his own posts. I'll let everyone know when he feels like having visitors or calls. Also, if you ever need a good plumber we know where you can find one. We love you.

Twelve!

2009-05-06T22:05:00.002-04:00

Quickie update: Blood tests yesterday (results today) showed my CEA count to be 12!

CEA is a chemical cancer marker in the blood. When they first measured it, my count was well above 8,000. After the first round of chemo, it went down by half. After surgery, it was down to 200 or so. After radiation, it was at about 41.

Normal is less than 3 for a non-smoker. Not three hundred, but only 3.

That's what we're shooting for after next week's colon resection.

Fingers crossed,

Clem

The things that make us happy

2009-04-30T22:16:00.007-04:00

This is a series of photos I took of Clem and our Grandson on the front porch early one morning. Adley loves Clem. Having this little fella around has been a big blessing to us during this tough time. We are lucky to have Jessica and Nic with us during this time of their life. They are great parents and it is wonderful to watch this part of life again.

Clem on rope

2009-04-30T21:56:00.017-04:00

The man is back on rope. I can't tell you what a great day this was for him. Rock climbing has been one of Clem's loves since the 70's. To make this day even more special he took our son Alex who has never been climbing. He has been in college for the last four years and graduates this weekend. We have enjoyed his company this week on several different adventures.

This is Clem at the top of his first climb since his liver surgery. Great day!!

Our son Alex. 6' 5" tall makes for some long stretches. He made short work of this climb.

This was the view from the top of Sunset Rock on Lookout Mountain. The Tennessee River is seen running through Chattanooga.

Alex again.

Another view of the area.

Canoe trip

2009-04-28T21:51:00.008-04:00

The beautiful Georgia countryside on the way to the river.

Some of the challenges of the day.

This made it fun. I fell into the water and gave Clem a big laugh.

The happy man photo. Tomorrow we go rock climbing.

Images of our days

2009-04-27T23:05:00.013-04:00

These are just a few images of our last few weeks. The weather has been beautiful and Clem's energy has continued to improve so we have be attempting to do more and more each day. He mentioned our canoe trip and the baby birds in our canoe in an earlier post. Here is an image of them. Looks like there are five of them.

Here we are after our morel mushroom hunting experience with our friend Doug Strait. Awesome day. We learned so much about finding them and their habitat from Doug and the wild flowers in this area were awesome too. We are still feasting on the mushrooms attempting to make them last as long as possible. If you ever get a chance to try some do it!

Clem inspecting our mushroom stash on the back of the pick up.

This is one of many walks we have taken lately just to build up Clem's stamina again and to take in some sunshine. We are lucky to have so many great parks that are close. Today we rode six miles on our bikes. It is the first time that Clem has been able to be on his bike since his radiation treatments.

This is a hike we took up the mountain behind our house. It was quite a challenge because we had to scale a bunch of large fallen trees. We did make it to the top and here is Clem in one of his favorite places with Stephanie's dog Zoe.

We are also doing our share of resting still. Even though there are fewer afternoon and evening naps taking place around here sometimes it is hard to resist a little cat nap in a beautiful park in the warm sunshine.

One Real Day

2009-04-23T22:40:00.002-04:00

Canoeing! What a beautiful way to spend a day. We went with our friends Doug and Dawn on an easy float trip down Lookout Creek in Trenton, Georgia. It's early in the season so there were a few trees down in the river. That made for some interesting bushwhacking but it was all part of the fun. The weather was perfect: sunshine and just a couple of clouds, warm enough to wear only shorts. My vitamin D count was a little low anyway. ;)

Seriously, though, this has been the first time in six months that I've been able to just get out and do a simple thing that I love, outdoors, and unencumbered with illness or treatment. It wasn't worthy of a spot on NatGeo TV maybe, but it was a helluva day for me. Pam seemed really glad to be outside and in the warm sunshine too (especially so after falling in and getting totally dunked in the chilly water!)

There's a little extra drama to the story. A wren had built her nest in the canoe, as it was hanging upside-down under the front porch. We hated to disturb her nest, especially since there were several baby chicks in it. We took down the canoe and transplanted the nest to a box that we hung in place of the canoe. Mama wren seems to have adapted to the new quarters just fine, and her babies all open up and yell "cheep cheep" whenever she comes home.

It's springtime, and there are signs of life everywhere,

Clem

Short and sweet

2009-04-21T19:04:00.003-04:00

It's almost come full circle, now. Yesterday I visited the first specialist doctor that I saw here in the US, the guy who did my colonoscopy and confirmed the Mexican doctor's diagnosis of Stage IV cancer. The estimates he gave me of what he could do were really kind of theoretical; he didn't have very high hopes that I would make it back to him for his projected role in my cure. His job is to remove the intestinal tumor that started it all, and then to stick the plumbing back together again.

So there we were, face-to-face again and this time with the very real and very immediate prospect of surgery. I said that everyone's done their part so far and now, it was his turn. There was something of a challenge in my tone, as if I were daring him to exceed his own expectations as the other surgeon had done. He picked up the gauntlet and put me down for May 12th. Though he reserved his options for whether I'd need any temporary (or permanent) ostomy, he offered hope that it would be a "one and done" operation. In order to get the big picture, though, he will have to make a pretty large incision. He'll go in from the front with a cut from just above my belly button to right at my pubic bone. This will give him the room to work and make the best decisions. Sounds good to me.

In the meantime, my job is to get as well as I can so as to be in good shape to withstand the procedure. Today's lab results were encouraging but not perfect. Out of 16 variables, 5 of them were outside the normal range. White cells were low, platelets were less than half of normal (though up from radiation days) and the other stuff seems like small change.

Ok, so this wasn't exactly very short nor sweet, but it's the news.

Thanks for listening,

Clem

Twirl

2009-04-11T10:05:00.018-04:00

It has been a week since Clem's last treatment and he made the declaration today that he is feeling better. There are other subtle clues which indicate progress. His smart ass mouth and his incessant punning are just two. It is good to have him back.

We have a few weeks off before any more treatment. Our current plan is to visit the colon surgeon on April 20th in order to begin surgery planning. After the procedure he will be going back on the chemo for approximately 4 months. We were kind of bummed by that news because we were expecting less. Everything will hinge on the lymph nodes which are located around the tumor. If they are negative then the treatment will be less intensive.

We will also have a battery of tests post operatively which will determine the success rate of the chemo and radiation he has already received. There is a blood marker (CEA) which determines the presence of cancer in your body. Our oncologist has monitored this marker through treatment. In October it was 12,000, after chemo it was 5000, after surgery it was less than 200, after the radiation it was 58. This is a very good sign that he has responded very well to the treatments.

Today we are in Huntsville with his family celebrating Easter and the impending arrival of our new neice. The weather has been beautiful and we just consumed an amazing meal. Clem is lying here beside me taking his daily nap and I am enjoying the warmth of his body and the sound of his rhythmic breathing. Husbands like babies are exceptionally cute while they sleep.

Clem seems to have a renewed energy lately. I think the chemo pump was a constant reminder of his situation and being rid of it allows him greater movement in his sleep. I know I am glad that it is gone! I am also happy to have a break from the hospital. It has been hard to keep negative feelings at bay while watching so many people who are sick. Clem is oblivious to these people. His mission is clear and it does not involve them. He does not have to have compassion or be moved by others he is simply in survival mode just like them.

I on the otherhand experience a common caretaker emotion. Guilt. I know it isn't logical but I compare. it with the feelings that survivors of large disasters experience. I feel guilty that it is him and not me. I feel guilty that I can't give more of myself to him or to the others I am watching. Some days I have to wear my earphones to the hospital just so people won't tell me more of their sad stories. I feel guilty because I am trying to survive myself and I am not sick.

Being around people who are facing grave illness and death is a very introspective place to be. Everyone knows that death is inevitable but most of us live our lives as if this only happens to others. I guess it is easier that way. Lately I feel as though I am seeing my life through a different perspective and the journey doesn't seem as long as it use to. My children are now having children, my parents are moving toward 80, and now my strong, healthy, invincible, husband is struggling for his life. It all seems so surreal and disorienting.

For those of you who know me would never say that I have wasted my life. I have certainly taken chances, jumped off my share of cliffs, and have more than once taken big bites out of the juicy watermelon of life. Even now the memories of the juice running down my cheeks onto my clean white shirt inspire me to stand up and twirl. Lately though I can't seem to remember that girls face and occasionally I become afraid that she will never come back out to play with me again. Then just when I seem to be overwhelmed with feelings about the uncertainty of our future Clem puns or makes up an insulting story about me to share with his family and I feel the fiesty girl inside cut her eyes, clinch her fists, and grin. Like I said, it is good to have him back!

False Start

2009-04-06T16:28:00.015-04:00

Sometimes a picture is worth a thousand words. Just in case you don't recognize this face I'll interpret. It means, "I'm going to rip this damn bell out of the wall if you don't leave me alone!" And yes he is still strong enough to do just that. Obviously the bell ringing scenario didn't play out quite the way I had planned. Clem did not sleep well the night before and I woke up in a "manic" condition. The combination of those two set the stage for a rather strange last day at the Cancer Center.

I think the bell ringing thing must be for the caregivers benefit because it appeared to me that the sick people did not want to hear the bell and Clem certainly did not seem that interested in ringing it. Of course I did
ask him to ring it multiple times in order to get a good shot for the website. BAD MOVE!

As if that wasn't enough the chemo nurses celebrated the last day on the pump with a beautiful tiara. That went over well!! They must have missed the memo about manly men. You can tattoo them, punch them in the arm or face, you can even offer them a branding, but don't make them wear a tiara! My new mission is to get some sort of reward for the nurses to give real men. I'm thinking duct tape, WD40, flashlights, pocket knives, or maybe even Home Depot rewards card. Of course Clem humored them because they really have been great but inside he wanted to punch someone in the face. Unfortunately I think it was me.

As I mentioned in the last post I was hoping for a new beginning here but as we all know sometimes there are false starts in life and this proved to be one. We went home that day and Clem piled into the bed for a three maybe four hour nap. He apparently woke refreshed because he planned a trip to Rome with his friend Ron to assist a business with a difficult rigging job on top of a Industrial Building. Apparently the wind had blown a huge chimney over and the men needed someone with expertise in the field to keep them from getting squashed.

The next morning he got up at 4:30 a.m. drove to Rome and put in an 18 hour day with his buds on top of a collapsing building. Now that is a man reward!! It did his brain a lot of good to get out from under my protective wing and scratch and spit and pee off of a roof top again. Me...well it made me a little crazy. I should be use to this by now. I've had three children leave the nest but this is a little different.

One really nice part of the day was a surprise visit from our friend Ann. She is a caving, climbing, outdoor friend who works at the Hospital. She recently married a man with three children so she now has a family of four which has kept her out of our circle recently. She still looks fabulous and happy even though she said her days as single mother were a cake walk compared to her current life.

And this woman...we have no idea who she is. She just wanted to get in on the fun. Clem always seem to attract beautiful women where ever he goes even the Cancer Center!

Ringing the Bell

2009-04-02T17:17:00.004-04:00

Clem finishes his combination chemo/radiation treatment regime tomorrow!!! It has been a long slow road but as an accomplished mountaineer he understands the importance of slow and steady perseverance as well as consistent rest steps. Looks like that training has paid off. His Doctor told him Tuesday that he wished all of his patience were like him. I'm not sure if he was referring to his results or his lack of complaints. Clem does not complain about anything. Women always talk about what poor patients their husbands make but I can honestly say that my husband is amazing. I have only seen him loose control once throughout this entire process and I am convinced that drugs induced his reaction.

Speaking of drugs, Clem has taken maybe 4 or 5 pills for nausea, three days of post op pain meds, and a few handfuls of ibuprofen during his entire course of treatment. This man is not a sissy. One thing I have learned from him is don't believe you will get every side effect that the Doctor says you will. Deal with what is happening now and do not contemplate what could happen. The mind has a great deal of power over your body.

Clem and I have virtually lived at the Hospital over the past eight months. Every day we are there we see people who are facing similar struggles. More than once we have been brought to tears over the suffering of some and more than once we have cried over the ringing of the bell. It is a custom to ring the big bell in the waiting room on your way out of the Hospital after your last radiation treatment. Many of these people can hardly gather the strength to reach it and other almost rip it off the wall. Tomorrow it is his turn.

This symbolizes so much for so many. It is another step completed on a journey toward wellness. Beating cancer is not for the weak. The treatment is tough and long but we feel we are soooooo fortunate to be in a position for cure. We will have the month of April off so we are planning an easy river trip with our friend Doug Strait and possibly a few local camping trips in the Casita. Yesterday we took our first hike since his diagnosis making our annual trip to "The Pocket" to see the amazing wildflower display. There seems to be just a small glimmer of light at the end of the tunnel now and we are cautiously peeking out into the world again.

For us the ringing of the bell represents a beginning not an end. The beginning of life again. Even though we are facing two more surgeries and another seven week course of chemo we know that he can stand up to the challenge and the worst is behind. So tomorrow ring a bell for Clem and for all those who are climbing a mountain too!

Pam

The Cancer Poetry Project

2009-03-25T14:41:00.002-04:00

This is from a book called The Cancer Poetry Project, edited by Karin B. Miller. I don't have the book yet, but we saw this in a magazine down at the radiation lab. It made me want to jump up and shout when I read it.

"The Cancer Patient Talks Back" (excerpt)
by Molly Redmond

No.
I don't want to hear about your uncle
and how he lived three years
after being diagnosed.
And I don't want to hear
how many times your cousin threw up when she had
chemo.
Nor how your neighbor's baby
had twelve toes
maybe from radiation.

...the only person I want to hear about
is your Grandma Ruth,
who was diagnosed at fifty
and died at ninety,
skydiving.

Otherwise,
hold your tongue.

The ending

2009-03-19T14:03:00.001-04:00

Oh Yeah...the aboriginal man survives!!

Breathing in and breathing out

2009-03-18T21:36:00.005-04:00

Watch the movie Australia. Afterwards research Australia's lost generation and read about the relocation of the aboriginals and the mixed breed children. The research will give more depth and meaning to the story.

I mention the movie because of a particular scene that touched me. An aboriginal man has been locked in a jail for days maybe weeks. The Japanese (WWII) begin bombing the city of Darwin where he is being held. The air strike is wiping out the city and the guards receive an order to release all the prisoners from their cells. There is chaos everywhere. All the white prisoners bolt from their cells into the night running for their lives and being caught up in the carnage. The old aboriginal man simple walks out of his cell and begins to look around. He watches the bombs exploding around him, the fires, the planes circling overhead, the mass destruction taking place in split second time. He never looks alarmed or afraid he just observes. At first you think he might just be ignorant of such things but then you realize that there is a very deep wisdom in his behavior.

I thought about this movie scene for days. How he quietly walked through the city never seeking shelter or help. Something about it seemed familiar to me and later in the week I spoke to Clem about it. We have been locked in a cell for seven months now. Bombs have been falling all around us. Every day we see illness, dying, and people struggling for their lives. Like the Aboriginal man we too have developed a calm observant acceptance of our situation.

It is much like a beautiful patina that develops on a piece of metal that has spent years being assaulted by the elements. The last seven months have changed us and what we have now is even more beautiful that what we had before. Because of our shared adversity we seem to be living in our own alternative reality. Personally I do not feel a part of the world as I knew it before. So many things seem petty and unimportant. I have spent the last few cold dark months of winter attempting to free myself of fear, anger, and sadness in order to reach a place where I could get up every day and be a person of strength and hope for my husband to lean on. I have not always succeeded but I have tried.

I have rejected/pushed people from my life in order to create an environment where Clem and I could be in a quiet, calm, and healing place. I have thought about the people that mean so much to me everyday but I could not find words to communicate to them what was happening. Consequently I have not read email, not answered texts, or phone calls for weeks maybe months now. I would like to say that I am sorry for this but I can't. I had to have the solitude.

This post is my attempt at letting my friends and family know that I am and that we are okay. We are actually better than okay. Clem's health is a day by day thing still but our heads and our hearts are rock solid. All of your words of encouragement and love have fueled us on and have meant much to us. He is grunting through some tough territory right now and all my attention is on him so I may not post again for a while. Just know that we love you all and know that you love us too. In our alternative reality that means everything.

Pam

False Summits

2009-03-15T23:52:00.003-04:00

Sorry guys, I thought Pam had posted something here recently. It's been a very strange week.

Tonight's topic is from a mountaineering metaphor, something known as a "false summit." When climbing a mountain, it's common to see only the shoulder of the mountain and think that it's the summit (the actual summit is hidden from view behind the shoulder.) It's hard for the climber once the actual peak comes to view to learn that the journey will be just a little bit longer. Even so, steady perseverance overcomes such mental setbacks and wins the prize.

Medically speaking the liver surgery was my biggest hurdle. If that hadn't had the somewhat unexpected outcome of complete success none of the other stuff would have mattered. Now that is over and working great, but there is still a lot of hill left to climb. I'm in week three of the radiation treatment, and feeling the side effects now. They include diarrhea, burned or tender skin, fatigue, and falling blood platelet counts. Three more weeks of radiation to go and then it should be behind me. It's no fun, but not all that bad so far.

Last Monday I met with the surgeon who will do my colon resection. He wants to wait for a period of a few weeks for me to recover a bit after radiation before doing his thing, which ought to happen about the first part of May. Though we'd hoped for a relatively easy procedure, it turns out that this one might be more than just a walk in the park. He won't know until he's in there and actually hands-on, but he spoke of things like having to reconstruct a pouch out of intestine to simulate a colon, the possibility of nerve damage affecting sexual function, having a temporary (but hopefully not permanent) colostomy bag, and several weeks of recovery before things get back to normal. I suppose that is "relatively" easy compared to the dire things that are associated with a massive liver resection.

But wait! There's more! After all of that, the oncologist wants to give me seven more weeks of intense chemo "just to be sure". That's the heavy dose kind, like I had before, with the effects such as cold sensitivity, long-lasting numbness in hands and feet, horrible-tasting mouth, and a grey, death-like pallor. Lovely.

With all of that, the goal here is a once-and-for-all cure, and that is what keeps me going. They said that this would be long and hard. Even with this latest extension in the treatment, I'd much rather do it once and do it now than to have this come back at some later time. That's the attitude I have when I tell them to "bring it on" and let's beat this thing and put it down for good.

Thank you all for your attention and support. It means the world to me.

New Tats!

2009-02-25T19:44:00.002-05:00

Three days into the next step now, and I have some idea of what it will entail. The perpetual chemo pump is annoying but not a big deal. The daily radiation treatments haven't had any side effects yet, but that's not expected for a couple more weeks.

The funniest aspect of this round has been my new tattoos! They put some marks on my behind with an ink pen, and then added three small "dot" tattoos as a permanent alignment device. I'm bragging about it, calling it my "tramp stamp" tattoo. In reality they are no more than freckle-sized. Is that funny or what?

Mostly, I feel a little bit tired. Perhaps it's just an excuse to take a long nap every afternoon, but that's what feels good to me.

That's about it for now.

Driving on,

Clem

Monkey Butt Blues

2009-02-19T11:23:00.003-05:00

We have a plan! The latest doctor, a radiation oncologist, met with me this week and developed a treatment plan for the next round. We will continue the aggressive treatment plan that has worked so well so far, and turn up the "heat" with some radiation, too. The good news is that the side effects are supposed to be less than the ones I've already had. If that's as bad as it gets, then I can handle it. They said the worst part of the radiation was that I might get some skin irritation. Looks like I'll be singing the "Monkey Butt Blues."

Pam, however, may "bust a gut" laughing at me. They painted target markings on my butt to aid in the aiming of the radiation beam. She is having visions of what they might say down at the nude gay beach. Fortunately, our local one is closed for the winter. ;)

For the next five weeks, starting on the 23rd, I'll be taking a low-level but continuous dose of the 5FU chemotherapy via a pump, combined with a 15-minute session with the radiologist every weekday. The goal is to shrink the colon tumor enough that the surgery on it will be easy and successful, and to eliminate worries about any spreading cancer to the lymph nodes near the colon.

Some time shortly after that, around the beginning of April, I'll do the last surgery. With luck, it won't be half as hard to recover from as the liver surgery. It involves a small, hand-sized incision vertically below my belly button. With that, I'll be cancer-free and working toward normal life. We'll wrap up with some more chemo treatment just to make absolutely sure that it's "gone gone" and be done with the whole thing some time in June.

Woo hoo!

I'm keeping my fingers crossed and my positive energy up here on the final phases, looking forward to being cured.

Cheers,

Clem

CEA Markers

2009-02-10T12:06:00.003-05:00

The doctor just called. If it was worth him calling me, it's worth me writing to you.

They did some lab work yesterday while I was there (of course) and the news was good. There's a chemical in the blood that indicates cancer is growing, it's called the CEA marker. Normal range is less than 5. Two months ago mine was around 3,000! Yesterday it was at 197. Yippee! Orders of magnitude improvement are what we're all about around here.

With that, we're going out to find something nice for lunch to celebrate.

Younger every day

2009-02-09T13:15:00.002-05:00

Funny how recovery works. After surgery I shuffled around the house like I was 110 years old. Now, I'm a spry 85 or so, and getting younger every day. That's such a good feeling.

Today's doctor visit went very well indeed. He was thrilled with the outcome of the liver surgery, and confirmed that that was the biggest hurdle. If it hadn't gone so well, we'd have only been buying time ("...a year or so...") Since it did, we're well on the way to a cure and making good progress. Woo hoo!

Next steps: A week from today I'll get back on a chemo regimen, and we'll also start radiation therapy. This time the chemo and radiation will work together, every single weekday, and we'll do it up until it's time for the next surgery. The goal is to shrink the tumor on my intestine to maximize the chances for an easy and successful surgery. We want to restore completely normal bowel function, a goal which seems possible to achieve. Surgery will be in about 4 or 5 weeks. Upon recovery we'll continue with some chemo and radiation, just to be as certain as we can that nothing has a chance to come back again, and then this thing will be over and behind me.

The news keeps getting better. He said that this chemo session will be low-dose, with far fewer side effects than the last one. Radiation will be targeted at my colon, so there shouldn't be too many side effects from that, either. Mainly just tiredness, which I am well used to by now. I will have to lug a chemo pump around all week, but I'm pretty well accustomed to that, too. It's not nearly as bad as it sounds like it would be.

Things will be pretty busy now through June or maybe into July, but we are (we hope!) on the "downhill stretch."

Thank you all for your caring and sharing.

Clem

More, more, more

2009-02-03T11:49:00.002-05:00

More blog posts, eh? I wish there was something interesting or significant to post, but it's all incremental. With that caveat, here goes.

The last couple of weeks have been a time of slow recovery from major surgery. I spend a lot of time on the small stuff: eating, finding a comfortable position of rest, and letting time pass. The doc asked me to track my body's outputs, so I keep a log of every BM and cc of fluid. The drain they put in my side is slowing and the fluid is almost clear, so it is now more of an annoyance to me than anything. Its job is to show that my bile ducts aren't leaking nasty stuff into my gut. That was one of the risks of this procedure, but all that seems to be working well for me.

A typical day starts with me being driven from the bed by hunger. I steal into the kitchen for a banana and a glass of milk. Then I check my email and decide if it is worth it to dive into the computer or back into bed for warmth and snuggling. Pam gets up about lunch time, so we eat and then launch into the day's activities: walking around and resting. With an errand or two thrown into the mix, that pretty much takes us through the evening. About midnight I've had enough and it's off to bed. The last few nights have been hard for me for some reason. Just like the baby, I get wrapped up in how my side hurts and "spiral down" into a hurting place. Pam has been a real gem at those times, talking me through breathing exercises and into a restful state. Once there I can make it through the night.

A few days ago I decided to come off the pain meds. It is much better, but all the dull aches blossomed into sharp pains that take a different attitude to deal with. Even so, I'd rather know the actual state of my body than a veiled, drug-assisted view. Most of the time, anyway.

This has been an interesting weather week, typical for this time of year here. Sunday we were all laying on the grass in the yard, soaking up sunshine. It was warm enough that my brother was comfortable in only a t-shirt, though I snuggled underneath my "blanky." Monday we had snow all day, falling in big, wet flakes only to melt on the ground. Today it's well below freezing, but clear and crisp outside. It would be perfect at the T-Wall today, if I were in climbing shape. Soon! Of course, every day is a good caving day, if I were in shape for that. Soon.

That's about all the news that's fit to print. It's time for some lunch, a little shopping, and a visit to the dive shop to check in with those guys.

See you all out there soon, no matter how long it takes!

Clem

Letting time pass

2009-01-29T21:36:00.003-05:00

I'm back! Enough so to catch up with the blog for today's update. Today was a painful one, but it all felt like "healing" pain and I made a lot of progress otherwise. All my bowel functions are working again, though it took some painful tries to get all the muscles used to the effort again. As a result, I spent this morning pretty deep inside my inner box, the place I go to get through difficult times. Kind of like the kid in the movie "Martian Boy", who just peeked out through a hole in a box.

Every day is better than the last one. Every part of my body and spirit are showing recovery. All I need now is for time to pass, for healing to continue, and to keep taking steps on the road.

The next scheduled event is a visit with the surgeon on next Thursday. I'm hoping he will take this drain out and pronounce me done with this part. Some time soon I will meet with the oncologist to determine when to get back on chemo, and then with the colon surgeon to work out some idea of when to do the next one. It should go easier than this one, but I'm sure it will not be a picnic. After that a little radiation, some final chemo just to be sure, and that's all they have planned.

In the meantime, days go by, one healing day at a time.

Clem

Long Day's Night

2009-01-28T12:19:00.003-05:00

Rest finally came to us at 5:00 am this morning. Clem just couldn't get settled and the pain was just too overwhelming for sleep. I totally understand how people become addicted to pain meds. My husband is totally anti medication and he turned into Jack Nicholas from the Shining last night when I refused to give him his meds early.

I realize that I haven't described his incision. It starts underneath his diaphragm level with his left nipple and extends across his chest and under his right arm. It is truly a beautiful thing! The skin surface has been super glued together so it looks neat and tidy and has never had a dressing covering it. Underneath his arm he has the famous "grenade" drain which is as much of a complication indicator as a drain. We are looking for anything green or dark brown to exit and this is an early warning sign that something is wrong with his bile ducts. Leaky bile ducts are bad! This is a major complication that can result in very bad infection so it is very important that it is there. Basically there is a tube that is snaked around inside his tender surgery site and exits under his arm. As you can guess this is a major source of pain right now.

I finally convinced Clem to try ice on the exit site last night as a final effort to pass enough time for more meds. Amazingly after some coaching on breathing, relaxing and how to break the pain cycle he fell asleep for an hour and a half. At 5:00 we ate a small snack, loaded him up with pain killers, placed a new ice pack, and astonishingly woke up at 11:00. Six hours of uninterrupted sleep!!!!! He looks like a new man right now sitting on the sofa returning emails and has had no pain medication this morning. Jess is feeding him non-stop and there appears to be no sign of the dreaded nausea today.

What a fantastic morning. Rain on the roof, moderate temperature, and every window in my house reveals a view of nature instead of a roof top or parking lot. I think I am going to sit in the hot tub in the rain and attempt to ease the ache in my hips from sleeping in the floor for a few days. Our daughter and grandson have an infectious happiness that is a welcome replacement to the Hospital vampires coming in steadily for more blood. It is good to be home with the hardest part behind us.

Moving on down the road

2009-01-27T21:01:00.004-05:00

The Doctor came in early took one look at Clem and asked if he was ready to go home. We had been discussing whether we thought it was smart to attempt to go home tomorrow so we suddenly found ourselves dropping back to punt. Looking around the cramped room and with the memories of lasts night constantly interrupted sleep fresh on our brains it only took seconds for Clem to say yes. So with a few written prescriptions and a list of brief instructions on what to have concerns about we decided to casually pack and move on down the road at a slow and lazy pace.

Somehow that plan never seemed to develop. I put Clem to bed and slowly started packing up. That was my first mistake. It was frustrating for him to watch me pack so inefficiently that he finally got out of bed and starting fussing over things himself. Next thing I know he's in the bathroom having a little session with the porcelain God and his pain level kicked up a few notches. This started a trend. Pain, nausea, stomach ache, bathroom, pain pills, nausea meds, and of course every time he nodded off for a little rest someone else came in to measure his urine output or mop his room with cherry flavored disinfectant.

We finally made a plan for me to slowly load our things into the truck, take a long rest, eat lunch, and then head home. Of course that did not happen because the battery was dead in our truck. I discovered this the night before but choose to deal with it later. So my parents came and we fought the little old ladies in the parking lot for a space beside the truck to jump it off. Did I mention that our water heater busted at the house this week too? Anyway, with that behind us I drove the truck home, unloaded our things, put dinner in the crock pot, and made my way back to the hospital to pick up Clem from his rest.

Lunch came and so did more nausea and more trips to the bathroom and a final attempt at a nap. Finally we had so many people come in we just said screw it let's bust out of this joint and we made a mad dash for the door. We were exhausted by the time we made it here but so excited at the possibility of uninterrupted rest that we immediately started preparing our little recovery nest.

Clem still cannot lie flat so I had to somehow incline the head of our bed. Clem needed a bath and wanted to wear clothes that covered his butt and gave a little more security to his "man parts" and I had an overwhelming urge to wash all the clothes, pillows, and blankets that had accumulated nasty illness germs in the hospital. After two hours we both found ourselves grumpy and exhausted. Fortunately Jessica made us a lovely dinner and Clem ate heartily and headed for the bed. He has been asleep now for two hours. I don't expect him to be back up unless he has some pain and I am hoping that the morning with find him refreshed and relaxed.

I too am excited for a good nights sleep and can't wait to crawl into the bed next to him. My dreams have been vivid and unsettling probably because of the lack of deep sleep and the disturbing noise going on all through the night. Clem has jokingly referred to my attitude as being "flinty" lately but I know that hard times are ahead and there can be little room for weepy girl emotions if I am going to help him through this. I think my dreams are also reflecting all the hysteria that I am keeping below the surface right now. Making him blow the tube, making him get in bed, making him get out of bed, and making him eat are all distasteful things to have to do to someone who you love so much and is in so much pain. Fortunately I have had this role three other times so I know that this is the right thing to do for him.

So many times I have wished that I was the one who was sick. I don't think this is so uncommon. It seems that it would be easier being the sick one but after watching Clem this week I am not so sure any more. He is walking a very tough road. I have always known that Clem was made of tough stuff but after this week I can honestly say that my husband is truly a mountain of a man.

Can't keep a good man down

2009-01-27T08:42:00.003-05:00

Doctor came in today and we are going home! I don't know what to say except this seems like a miracle to me. I'm a little concerned that I can keep him adequately comfortable but the idea of getting away from the hospital before he catches a nasty bug sounds like a good plan.

Thank you for all of your prayers. Everytime I read another email from you guys I realize what a wonderful man that I am married to and how lucky we are to have each other and such a great base of amazing friends and family.

A quiet night at the campground

2009-01-26T08:42:00.004-05:00

I don't know what happened but the the Boyscouts must have gone home yesterday. We both slept uninterrupted until the 5 a.m. vital signs and weigh in. Yep, they wake you up at 5 a.m. and ask you to get out of bed and be weighed! This morning Clem discovered that 8 pounds of fluid had slowly seeped out of his body through a drain he affectionately refers to as his "grenade". I guess I don't have to tell you that the distention in his belly is subsiding.

He is in a good mood and has a smile on his face this morning. The Doc is talking about releasing him on Wednesday if he continues to walk and learn to manage his pain. He got out of bed by himself this morning while I was passed out in fetal position on my therma rest in the floor. I can tell that he is significantly better because he is reading all the instsructions on all the equipment and all the labels on all the food and playing with all the knobs and dials and poking his fingers in to all the nooks and crannies and wanting to take a bath and bitching about his leg wraps and rearranging everything on his bedside table.

He ate a banana this morning! He told me that he was happy to take his food intake slowly so I watched him consume it in three bites instead of two. The Doctor told him he could eat anything he wanted and if he wanted something outside of the hospital he could have that too. He told the Doctor that someone had already brought him a great Gun Magazine. I don't think that the he attempted to eat that magazine but he has been doing and saying some strange things on the morphine.

He has his phone 423-304-3102 in the pouch in front of his fashionable gown. It will be great if you call. While talking ask him if he has blown into his tube today? Yesterday he did not blow and the protocol calls for ten times every hour. I took the chicken way out this morning and told his nurse to chastise him. This keeps pneumonia at bay and of course it is tough to do and Clem thinks he is breathing just fine. I thought he was going to stuff the tube up my nose this morning when I suggested it...again! Someone has to do it!

He is working on the fourth and final post surgery task which involves sitting in the bathroom for long periods of time. I think they filled him full of gas when they did the laproscopy and it has yet to find a way out of the maze. He is suffering with that now so until I make a post otherwise I am asking you to wait just a bit longer to visit. It is hard to "concentrate" with visitors sitting on the other side of the door.

UPDATE: We got the bath but things have gone a bit sour since. Nothing serious just nausea, a little vomiting, and stomach ache. It appears the gas from the laproscopy is rolling around inside his tender guts and causing him frustration and pain. Got him back into the bed exhausted and he is trying to nap a while. I am sure we will pass this hurdle too. Good news is pain is much better. If we can get the plumbing kick started again I think we can do the rest at home!!!

I'm napping too now. Love to you all.

Doing Hard Time

2009-01-25T18:50:00.003-05:00

The epidural came out today around 2:00. By 4:30 Clem was in pretty serious pain despite the percocets which seemed like a wimpy substitute to me. After holding out for a little too long he finally complained and now he has a morphine pump at his disposal for a few days. It made a huge difference!!

We finally got the pain down enough to walk down the hall plus three extra rooms. The goal is to do more everyday even if it seems small. This has probably been his toughest day so far and I am hopeful that he will have a good nights sleep with the supplement of a few oral pain meds just before lights out.

Give him just a few more days and I think he will be able to tolerate visitors. His abdomen is still quite distended and the Doctor said that in a few days he would learn how to move without triggering the pain so intensely. I am pleased the Doc started the day with a Don't Be Discouraged talk because it was obvious that Clem was not expecting what hit him this afternoon. He continually repeats his Uncle Tom's advice and attempts to just let time pass. Today though was some hard time.

Dazed and Confused

2009-01-25T10:46:00.003-05:00

Thank God I brought ear plugs!! Clem has that trusty and always effective morphine pump to put him down into the deep bowels of sleep but I laid in the recliner last night until 1:00 listening to the lady next door talk to Miss Lucile. She walked out in front of our door in order to be courteous to her sleeping relative and somehow instead of engaging her with my famous "flying bitch slap" I got sucked into a late night conversation between two elder southern black ladies. When I finally realized that I had no control of where my ears were taking me I fished out my trusty ear plugs and suddenly my world got very small and still.

I also realized last night that an extended stay at a hospital is much like a long term camping trip at a state park. The only thing that seems to be missing is the gaudy rv lights and the coolers full of beer. I wonder if we aren't in the primitive camp ground and some where in the maze of rooms here is the uppity hook up sites with the complimentary club house. At any rate I am happy to have my camping skills to draw upon while our stay here. I am contemplating setting up our two man tent complete with therma rests and our light weight bags. I haven't measured this unbearably uncomfortable recliner but I am pretty sure that their footprints are similar.

We slept last night in 45 minute increments. There is still a lot of checking, emptying, and measuring going on constantly. We had to discuss what we think actually happened last night vs. what we may have dreamed. When the Doctor came in at 8:00 Clem made some stupid comment about loving to hear the sound of his voice and the Doc just roared. I'm not sure he remembers that and I will probably just let that one go. At any rate he received a glowing report with cautions about becoming discouraged about his lack of energy. Afterwards more tubes were removed, he gave himself a bath, changed his fashionable gown, and is bunked down for the day. I am contemplating barracading the door or pasting a quarantine sign with a photo of a pustule coated face in order to keep the weaker ones out!

So...the news is that Clem is very exhausted but medically performing miraculously. Today he is too tired to read. On a scale of one to ten that is a ten. Today will probably not be a great day to visit because he could really use some sleep. It would be great if you could post a comment or send an email because he loves to hear from you. Love you all.

Have you ambulated today?

2009-01-24T20:39:00.005-05:00

Well it seems that they couldn't justify keeping Clem in the ICU any more and today around 4:30p.m. they wheeled him and his belongings out into a room. Actually it is more like a very big closet but considering that we have lived for months at a time in our little Casita this feels quite spaceous.

There seems to be three very tough hurdles in the recovery trek from surgery. 1. ) getting out of bed and sitting up for the first time, 2) peeing on your own after the catheter is removed, and 3) the first walk down the hall. I have already described the dreaded first sitting. The peeing thing came fairly easy because the massive influx of iv fluids had to come out somewhere and the constant treat of recatherization was serious motivation. However, he really didn't think walking down the hall today was in his best interest even though the only sign in his room stated, HAVE YOU AMBULATED TODAY?

I thought the sign should actually say...YOU BETTER GET YOUR BUTT OUT OF THAT BED AND WALK DOWN THE HALL FOR THE FIRST TIME WHILE YOU STILL HAVE THAT EPIDURAL IN YOUR BACK KEEPING MOST OF THE PAIN AT BAY! but it didn't. His cute little nurse however did come in and read the Doctor's instructions to walk down the hall this afternoon and of course Clem is going to follow all instructions especially if he has to report his success back to a cute little nurse. I am happy to report at this time which is Saturday 9:00 p.m. est, approximately 72 hours after major liver surgery, Clem has successfully received and been presented with his post surgery certification.

On a more informative note. Clem is in room 504. He loves having company and would love to hear or see you. It would be nice if you could call in advance for a few days to see if he is up to your visit and to make sure he has not been overwhelmed with guests. Even though he is improving miraculously he does need lots of rest and for those of you who have been in the hospital before you know that it does not always come easy here.

Thank you again for all the texts, emails, and calls. They mean so much to him. We love you all.

Clem finally gets his football letter sweater

2009-01-24T19:41:00.009-05:00

His Mom said Clem did not play organized sports in High School because they didn't realize he could not see until he was almost twelve. Of course by that time all the future Olympic athletes had been in training for eleven years and it was just too tough to catch up. So Clem decided to take a different route (surprise) and he joined the RIFLE TEAM. Duh!! Who wouldn't want to legitimately own and shoot weapons as a young boy in Alabama where everyone gets their first 22 rifle on their tenth birthday? Anyway it was always a joke around our house because he has this crazy letter sweater emblazoned with a Rifle Team crest. (I know this sounds alot like a slow dull trip down memory lane but there is a crescendo.)

After surgery the Doctor informed us that he had removed a massive tumor. Following a brief review of the arduous medical procedure he completed his report with a review of Clem's excellent prognosis. While Faffy and I attempted to absorb this unbelievable report the Doctor very quickly asked us if we had any questions and we of course said NO. What more was there to know...Clem was going to be okay. However, we have since learned that everyone wants to know all the ghorry details of other people's misfortunes and Clem was called upon this morning to find out just what "massive" means in relationship to livers, tumors, and surgeons.

Five of us set to make a list of questions for Clem to ask the Doctor this morning because he kept forgetting all of his questions in his drug induced state. We weren't sure that we could make a meaningful description out of the anticipated gram weight so we prepared a check list that would compare his tumor size to certain size sports balls. Of course everyone has heard of someone who has had either a grapefuit or a baseball size tumor so we thought it would make transferring the information more ammenable to the general population. Stephanie informed us that the liver weighs 3
pounds so our list started at golf ball and ended at football just because we got carried away.

And the winner was.....FOOTBALL!!!! Not just an ordinary football which weighs 14 to 15 ounces but a 7 pound football! Can you believe that? Did he look like a man who had a 7 pound foreign object stuffed into a space where it could not possibily fit? At any rate after we all rolled our tongues back in our mouths and chatted up what a great medical story this was going to make we decided that it was time to present him with the much sought after and much deserved famous football team crest for his High School Letter Sweater.

Clem, Clem he's our man if he can't do it nobody can!!

(Do I have too much time on my hands or what?)

24 hours later

2009-01-23T13:52:00.004-05:00

That man is amazing. He sat up in a chair for an hour today, got a bath, washed his hair, had his first meal, and is finishing the fourth book of the "Twilight" series. Of course he stil has the morphine pump at his disposal and an epidural in his back which I am sure has aided his speedy recovery. The surgeon is incredibly pleased with his outcome and his recovery. The Doctor plans to move him into a room in the next two days if he continues on his current track.

I will keep everyone posted when this happens and when he lets me know that he feels like having a few visitors. I would appreciate a call if you plan to stop by just so I make sure that you actually get a visit in between all the many procedures. Thanks again for all the many emails, notes, and calls. We love you and can't wait to be out and about again.

OOB (Out of bed) Middle of the night 1/23

2009-01-23T12:19:00.007-05:00

I couldn't remember her name but I could never forget her hair. I had met her briefly when I visited the ICU earlier in the evening and she assured me that Clem was doing well even though he was sweating bullets and rambling on about swimming in a pool inside a volcano in the Phillipines once. She was shaking me repeatedly while I was passed out in fetal position in the green pleather recliner in the waiting room. Sleep had come on hard and fast even though the lights would not turn off and the television next door was playing the 24 hour "Sponge Bob Square Pants" channel and now my brain couldn't seem to rise to attention. At first I thought I was dreaming but her persistence in rousing me finally reached a synapses that was capable of sparking and I found myself weaving down the hall to the ICU in a dreamlike state.

Clem was getting out of the bed for the first time and he wanted me to come and sit with him. Having had major surgery myself I understood the significance of this first upright movement. Many people pass out or vomit during this time and of course I wouldn't want to miss that. He was already in the chair when I came in and he motioned for me to wiggle up onto the bed facing his chair. I thought you might get a kick out of seeing this he said just as if he were trying out a new type of rope technique that I might be interested in. Little boys never seem to get over having their mommies come and watch them do something amazing do they?

I think he may have been there 7 to 10 minutes when all his monitors and the color of his skin indicated that his body was about to panic. He and the nurse almost simultaneously decided that it was time for the monumental event to come to an end and he stood and tried to get back into the bed amongst the tangled tubing. For some reason when he lifted his right foot in order to drag a tube underneath his vomit reflex was triggered and he cringed and murmured "nausea".

The nurse darted out the door which seemed a bit unusual as Clem turned pale and started desperately to mentally keep any spasm from happened around his recently assaulted diaphragm. Fortunately his mental signals queled the painful event and he leaned back in a tangled heap closing his eyes and attempting to slow his breathing. Wow! I had never seen this man battle like this even on the toughest climb or the smallest hole in the ground. As the nurse ran back in the door with the supersized vomit basin Clem looked up at me with a look that acknowledged what we both already knew...he had made it past the first crux.

The first viewing

2009-01-23T10:36:00.004-05:00

I have never seen soooo many tubes coming out of one person! The NG tube and the multiple iv and arterial lines were expected but nothing quite prepared me for the poisonous pigmy dart sticking out of his neck like a high tech Frankenstein accessory. Bugged eyed and struggling to make both his eyes travel in the same direction Clem reassured us that he was doing just fine except for the scratchiness in his throat that he couldn't seem to tolerate. GET THAT MAN A SUCRETS!!

While I shoveled ice chips into his mouth he began to review all the different types of appliances that were working with or upon different parts of his body. Suprisingly he was most impressed with the vibrating leg wraps that intermittenly stimulated the circulation in his lower legs. Me...I thought the pain pump was a pretty handy tool to have around. In any case I was glad that he had "gear" to examine in order to distract him from the effects of the massive invasion that had just been made into his body.

Unsure if he would actually remember, I began to tell him all the good news. Little by little it seemed to sink in that the results that we have been wishing for actually had come to pass. It felt really great to be the bearer of good news for once.

Cheated Death Again

2009-01-22T17:15:00.003-05:00

After a five hour intense and intricate operation our surgeon successfully removed a very large tumor which had encapsulated Clem's entire right lobe. The results were even better than the Doctor thought possible because he removed the lobe with clear margins and no other visible sign of cancer.

This is the best possible news that we could hope for because this makes his possibilities of cure rise to 70% over 20%. Our oncologists has assured us that a successful liver resection would set the stage for a cure. Today is truly a big step forward in his recovery.

He will be in the Medical Intensive Care Unit on the fourth floor of Memorial Hospital while being monitored for complications. Afterwards we are expecting a stay for a week or more. Visiting hours are very sparse while in Intensive Care and we are expecting him to feel pretty crummy for the next week. I will post when he gets out in a room and feels like having visitors.

Thank you all so much for your prayers, love, and words of encouragement. We love you. My phone number is 423-838-2810.

Pam

Once again, one more time

2009-01-13T16:15:00.004-05:00

Ok, this is the final date, the last time, the "fer sure, fer real" date: Thursday, January 22nd at 8am.

The doc called to say he would be out of town after January 30th. "Sounds good to me", says I, but Pam was having none of it. She called them right back and gave the poor assistant all but a "flying bitch slap" and insisted on an earlier date so the doc would be here and handy throughout my hospital stay. (She'll be there just like in the movies, saying "If he dies, you go next..." and menacing the hospital staff with a pistol.) Just kidding!

Anyway, next week is the big week for me.

Watch for news on Thursday,

Clem

"D" Day Redux

2009-01-12T14:33:00.002-05:00

The visit with the surgeon went very well! Maybe I had a virus, or maybe it was just a come-and-go case of "tumor fever", but all of the tests and cultures came out negative. We're back on schedule with the plan of a laproscopic peek inside, then (assuming a clear view) a major liver resection.

The new date is January 27th (Tuesday) at 7am. I get to be there before 6am for admission and pre-op things.

After that, I can expect to be in the Intensive Care Unit (ICU) for a few days, and then in a hospital bed for another several days, maybe two weeks total. There is the possibility of an early release for good behavior, if things go exceptionally well.

In the meantime, I am laying about the house, engorging on ice cream in an effort to gain weight. Just call me "the fatted calf" and I'll answer. It's been good having a little more time to get a few last things checked off the never-ending list, but I'm really ready to get on with it and continue progress.

Back to waiting...

Last-Minute Delay

2009-01-06T12:14:00.002-05:00

Ok, time to "fess up." It's not all just beer and skittles around here all the time. Over the last two weeks I've been feeling worse and worse, though (being off the chemo) I had hoped to feel better and better. Yes, that did piss me off a touch.

The plan was to do the liver surgery tomorrow (Wednesday, the 7th), but now that plan's been changed. I went in on Monday to inform the surgeon that I'd had a low-grade fever for the previous 5 nights or so. He sent me over to the oncologist, who prescribed a battery of tests that kept me at the hospital most of yesterday and half of today. (Blood, urine, more blood, ultrasound, x-ray, and physical exams.) All the preliminary tests came out clean, but the infection test evidently takes 5 days to get the final result. The upshot is, surgery tomorrow is cancelled, I'll meet with the surgeon on Monday, January 11th to reschedule, and we'll go from there.

The oncologist thinks that what I'm feeling is "tumor fever", which is the body's natural response to handling a dying foreign mass like my tumors. Nothing really wrong, it just makes me feel achy and weak and really tired all the time. Lovely.

Even so, if this is as bad as it gets, then I'll consider myself super-lucky and take it with a grin. It's a forced grin some evenings, but a grin nonetheless.

Now to re-schedule the rest of my life...

Clem

How's the serenity?

2009-01-01T21:00:00.002-05:00

This chapter's title comes from a funny, quirky Australian movie called "The Castle." Our resident Aussie Rosemary turned us on to it and it's a wonderful movie, if you're into Australian humour. It's a bit like British humour, but drier and funny. Anyway, the lead character finds his serenity at his country house, called Bonny Doon.

Over the last couple of months, and going in to the turbulent next few weeks, my serenity has been remarkably well. I have been speculating on it a bit, so here's what I have thought:

As a mountain climber, caver, or rope access technician I have to suspend the very reasonable fears that working and moving in scary, exposed places entails. It's not that the fear isn't there, it's that I've done what I can to mitigate the dangers and accepted the rest. I've been doing that sort of thing for more than 30 years now, in the outdoors. Perhaps those same skills are coming to play in my current situation, too. I have researched the options, mitigated the hazards as best I can, and now it's time to "knuckle down, buckle down, do it do it do it." (Thank you, Roger Miller.)

Pam has not been so fortunate. She gets worried more than I do, expresses it more than I do, and spends more energy searching for her serenity. That said, she has been a huge reserve of strength and support for me. I hope that I can give her back the same energy and help her through this as she helps me.

It's a bit surreal being on "this side" of such well-wishes. I've never been in hospital before for anything other than a checkup. People don't know how to handle it, or what to say, but everyone I've spoken with has had nothing but positive, helpful things to tell me. Such energy helps me with my attidude; helps me keep those dark fears at bay. Thank you all for every card, email, prayer, comment, phone call and text message, and for those big hugs in person. It all helps, believe me.

Whoops, I'm getting overly sentimental again! Time to go and run some power tools in the "man pad", that is always cheery. Serenity! Vroom...vroom...

Schedules and dates and such

2008-12-16T12:57:00.002-05:00

Yesterday we had a very good meeting with the oncologist. We nailed down some dates and some better projections for the future, both of which I was really glad to have. In a nutshell:

This week's chemo treatment is the last I'll have for a while, so as to build up strength for the first surgery. I'm off the Avastin now for good. My next chemo treatment won't be until January 26th, so I can expect to feel really good through the Xmas and New Year holidays. That's nice!
Liver resection surgery is scheduled for January 7th. Though this is no small thing, the liver is a fast-growing organ that we hope will re-grow itself to much of its function in only a several weeks. The oncologist says I will have "normal" liver function with only perhaps 15% of it, and it should re-grow to perhaps 60 or 70% of its original size, so I should be good-to-go there in the future.
About as soon as I am strong enough to take it, we'll do the colon surgery. I don't know when that will be, maybe in March or somewhere around there.
Beginning January 26th, I will go back on chemotherapy and start radiation treatments as well. That's to make "really really sure" that the cancer won't spread any farther from the initial site, and to ensure that the lymph nodes around there are all cleaned out and not harboring additional malignant cells.
The chemo and radiation treatments will go on for quite a while after that. We were a little surprised to hear it will be through the month of June or so, but in the big picture that's not so long. I've been doing this for almost 3 months now, so I have come almost 1/3 of the way down the road. So far, so good.

Last week I was really busy. It was the end of my "non-chemo" week and I felt pretty good, though with more side effects than from the previous cycle. I attended the Christmas party that the Chattanooga Grotto of the NSS put on. I was president of that group for a few years, a few years ago, and am still friends with most of them. It was good to catch up with the local cavers.

Also, I got to help my friend Benjy with a filming project that he is working on. I did a little bit of rigging inside Mystery Falls Cave, right over a nearly 90m (300') pit. He is making a documentary film about the Jews who hid in Priest Cave in the Ukraine during WWII, and will use some of this footage to represent conditions there. It was a bit tiring for me, but it was great to be inside a real cave again, doing some actual rigging. Even so, I felt like a puppy who has his nose to the window but who can't come out to play as I watch the other rigger re-bolting and negotiating a dicey traverse around the pit.

Finally, on Sunday, step-son Nic wanted to check out his new rock climbing shoes at the local crag, so I said I would be his "belay slave." It turned into a big family outing as Pam came along with Nic's wife Jessica and their 4-month-old baby Adley. We hiked to Sunset Rock and rigged an easy, fun climb of about 20m (60') up the sandstone caprock. Nic nailed his climb with ease. Jessica did great as well, but elected to stop about halfway up. Mustering up all the courage I could find, I took a crack at the wall, and stumbled upward even though I was wearing gloves and hiking boots. It made the climb more challenging, but that was good for me.

All the activity left me really tired and slightly feverish at the end of each day. I am still deciding if that was just my body's healthy reaction to the exercise as it worked to purge these diseased cells or if that means that I worked too hard and I was hurting myself. I'll probably have it all mapped out by about next June or so...

In the meantime, other than turning grey at first and now mellowing to a kind of green color, I'm doing well with this round of chemo. Things even taste kind of good to me. Mostly, I am looking forward to a good "quality of life" experience over the holidays with friends and family. All y'all.

Cheers,

Clem

Silver Linings

2008-12-08T22:50:00.002-05:00

Today's topic is "Silver Linings", the good things that have come about over the past few months. It turns out that there are more than a few of them.

Spending time at home. I live in a lovely log house, deep enough in the woods that only in the winter can I see the lights of my neighbors, and then only barely. It has been wonderful to watch the season change. I got back here just in time for the leaves to turn. Each morning, the huge picture windows in the bedroom would light up with a new brilliant color, reflected from the rising sun. Moving into the new "man-pad" has been a pleasure, too. It's still too full of junk and disorder, but every day it gets closer to being my perfect little sanctuary (or lair...)

Family time has been a pleasure, too. Usually I'm on the road, either for work or just to be rolling along, so I just "catch as catch can" any quality time with friends and family. With a new grandbaby in the house (4 months old now) there is something new to see every day. He always has a smile for me, and wants to come and be held. Pam has been glad of the studio time and the "together time" we've had, even though some of it is for the wrong reason. This has brought us closer together, which we have needed lately. My parents dropped by this past weekend, bearing gifts! How sweet of them. They brought me a huge, snuggly-warm cotton bathrobe (perfect for dashing to and from the hot tub) and hauled off some chairs and boxes of stuff we had for them. A great deal all the way around.

Working has been good, too. Not exactly the kind of high-adventure that I signed up for, but not bad all the same. I attended a 3-day professional course on Confined Space work and wrote a short presentation for the guys at Ropeworks. They enjoyed it and found it helpful, and it fulfills a requirement for annual training. Next semester I will teach a course for a good friend over at the Southern Adventist University. They have an outdoor leadership program that is really taking off, and I keep in close touch with the people there. The program director there said "Now that you are captive in town for a while, would you like to teach?" He cheers me in my travels (and generally beats them with his own) but he knows an opportunity when he sees one. It works for me.

My friends have rallied and gotten behind me in ways that I would never have dreamed before. I've always appreciated them and treasured their presence in my life, but now it is at a whole new level. If you're reading this, then you are either one of those friends or family, and your renewed closeness with me is the shiniest silver lining of all.

I'd better close this now, before I get too maudlin and start weeping or something. Cheers!

The Surgical Oncologist says...

2008-12-04T12:00:00.002-05:00

Breaking news: they'll be breaking into my liver in January. So far, even with the new pictures, there's no reason not to do a big liver resection, and it looks like the date is January 5th or 6th. The surgeon was cautiously enthusiastic. This is a pretty big operation, and there is a significant risk associated with it, including infection, liver shutdown, and death. His plan is to peek in there with a 'scope, verify that there is no additional cancer in the area, then to make the big cut and take out 50-60% of my liver, almost the entire right lobe. There is still a possibility that he won't be able to complete the operation, but all we can tell so far indicates that we're ok.

With that, things will be pretty stable until then. I will continue my chemo treatments, but without the Avastin drug (it can cause bleeding, which I don't want after surgery.) I'll be off a week, then on a week, for the foreseeable future.

Thanks for checking in, and for appreciating the new blog format.