Walmart: Good vs. Evil

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

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

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

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...

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

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

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

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

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

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...

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

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

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!

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

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

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

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!

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?!?

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

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...?

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

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

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

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

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

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

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

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

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

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

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!!

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!

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

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

Prevention--an ounce is worth a pound of cure

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

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

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.