An Update of Sorts

miles of solitude, originally uploaded by Seattle Miles.

I talked with Dr Buie on the phone last night. He said the pressing issue right now is to take care (surgically) of the piece of the small intestine that is connected to the abscess. He said the surgery would involve cutting out a small piece of small bowel and joining the ends together. It sounds easy but I'm not so sure. I'm really not looking forward to another surgery.

He also said that an option at that time would be to remove the colon and the piece of the large bowel that is connected to the abscess and give me a permanent colostomy. He said that surgery is less pressing than the small bowel part and it's really up to me. He said that a colostomy was the best chance of taking care of the abscess once and for all but it was by no means a sure thing. He said that even with a colostomy I could still end up with an abscess and a drain. At this point I would just like all of this to be over with. I don't care if I end up with a colostomy but I don't want it to be for nothing. If the abscess is gone then that's one thing but what's the point of going to a permanent colostomy if it doesn't solve the abscess problem? I'm trying to schedule a meeting with Buie in his clinic on Monday to discuss all the details so we know EXACTLY what the options are.

I wish it was just all over with...

Just to be Clear

I just wanted to explain a little more about my abscess and its various connections and complications. It's obvious to me what's going on but I thought I would take this opportunity to recap for all of you that are a little confused as to what this all means.

The original abscess was located between my colon and tail bone. We thought it was an isolated infection that originated from the original colorectal surgery I had 16 months ago. But after a bunch of tests and 6 months of elapsed time, we discovered that the abscess was connected to my colon via a small sinuous tract (this was not good). This meant that bacteria from my colon could get into the abscess preventing healing and causing ongoing infections. With a drain in the abscess, bacteria was constantly being carried out of the abscess thus no large infection could form. But with no drain in place (I had my drain removed at the end of February), there was no way to keep the bacteria moving out of the abscess so of course it became infected again. In order to rid the abscess of infection again another drain was placed. I'm not sure how but after the new drain was placed it became obvious that a new connection to my small bowel had been established (this is definitely not good). While the small bowel does not contain the abundant natural bacterial flora that the large intestine does, it's still not a good thing to have a hole in your small intestine. So now, here I am with an infected abscess that is connected to both my colon and small bowel. It's not a life threatening thing but the likelihood of this abscess healing itself with all that bad bacteria in there is very slim. The most likely solution will be surgery but I will wait to see what Dr Buie suggests early this week when I talk to him. I hope this helps you understand what's going on with the drain, abscess and all the related connections.

The Test Confirms It

This picture is off the web but it shows the same kind of image the doctors saw this morning when they did the sineogram.

The test doesn't lie. It was obvious from the sineogram I had this morning that my drain is in fact in communication with my small bowel. I had a good view of the monitors from my somewhat exposed position on the table and it was obvious even to me that the dye was not confined to the abscess, but was free to spread into my small intestine. The lack of dye in the area of my rectum indicated that the old fistula may have closed. It could also mean that the dye just followed the path of least resistance and went into the small bowel when in fact the sinuous fistula connected to my rectum is still open. Who knows? Now I have to wait for a call from Dr. Buie to discuss the results and come up with a plan. I hope he calls today but I'm not holding my breath. I expect to hear from him early next week. Until then it's business as usual.

Perforated?

Penny and I went to see Dr. Buie yesterday in his clinic. It was an appointment we had scheduled months ago to talk about the latest and greatest events in my treatment. We talked about the drain being back in and how much I hate it. Then he looked at what was coming out of the drain (I've had lots of flow and weird food-like sediment lately) and said "Wow, that looks like poo". That led him to think that when they replaced the drain, they may have perforated my small bowel. Good times. He said it's not as bad as it sounds but I don't really believe him. Tomorrow they are doing a test to see where exactly the drain is positioned. That should tell them if my small bowel is perforated or not and if the abscess is growing, shrinking or staying the same. I can't wait for them to fool around in my butt again (did you catch the sarcasm there?).

The end result of all of this has not changed. Regardless of what the test shows, I will likely need surgery to fix things up down there. The surgery will likely end up being a permanent colostomy which should mean no more drain, no more infections, and no more doctors trying to shove things up my arse. I will have a permanent bag but I couldn't care less at this point. I've had a bag for more than a year and things are going fine. I'm used to it and would rather have a bag for the rest of my life than deal with drains and infections for the next few years. There is no word on when the surgery will be but I will likely talk with Buie next week about timing and to solidify a plan. As for the mets in my lung, we will have to wait for a while for them to grow so they can be removed. Hopefully that surgery can be done soon too but I'm not holding my breath.

And finally a joke for you:

An Aussie walks into a bar with a pet crocodile by his side. He puts the crocodile up on the bar. He turns to the astonished patrons. 'I'll make you a deal. I'll open this crocodile's mouth and place my manhood inside. Then the croc will close his mouth for one minute. 'Then he'll open his mouth and I'll remove my unit unscathed. In return for witnessing this spectacle, each of you will promise to buy me a drink.' The crowd murmured their approval. The man stood up on the bar, dropped his trousers, and placed his Credentials and related parts in the crocodile's open mouth. The croc closed his mouth as the crowd gasped. After a minute, the man grabbed a beer bottle and smacked the crocodile really, really hard on the top of its head The croc opened his mouth and the man removed his genitals unscathed as promised. The crowd cheered, and the first of his free drinks were delivered. The man stood up again and made another offer. 'I'll pay anyone $100 who's willing to give it a try.' A hush fell over the crowd. After a while, a hand went up in the back of the bar. A blonde woman timidly spoke up........... 'I'll try it - Just don't hit me so hard with the beer bottle!'

The Delicate Balance

I don't think this post is done but I thought I had better post what I have before I get frustrated and delete it.

One of the hardest things about being diagnosed with cancer is the internal mental battle that one goes through when you hear the words "you have cancer". Am I going to die? Is there a treatment plan? How long until I get back to my old life? The questions are numerous and often, not easily answerable. When I was diagnosed I was glad that it happened to me and not someone else in my family. I felt that I had the mental fortitude to deal with something like this. Of course I felt a little cheated at possibly having my life cut short and I was disappointed that my family had to suffer alongside me but overall I felt like I had the strength to do this.

Of course the main mental battle stems from the need for a balance between optimism and realism. This juxtaposition is sometimes difficult to feel your way through at the best of times, let alone when you have cancer. How do you carry on believing you're strong and you're going to survive when you know full well that the statistics say you have a better chance of dieing than living? I guess the real equalizer is hope. Hope seems to be the emotion that is most at peace with both optimism and realism. It can carry you through the depths of the most dreadful possible reality and is the cornerstone of optimism. For me, hope is what gets me through the days, good and bad and it allows me to keep building positive memories for my family while battling this awful disease. It's a delicate balance but it works.


Now it's been more than a year and a half since my diagnosis and I thought I should do a little reflecting after dealing with all 'stuff', mental and physical, that has transpired over that past year. To be honest, I still feel the same way. I still feel confident and glad that this has happened to me and not someone else. I'm tired of the hospital and tired of being tired, but I still feel like I have the mental strength to make it through this battle and out the other side without having to get tossed in the loony bin along the way. While some of that strength is internal, I have to give credit to the support I've had from friends and family. It's been truly an amazing experience to feel everyone rallying around me. I feel like although I'm the one with the cancer, everyone around me feels all the ups and downs as much as I do. So thanks again for all your support, comments, conversations and just plain good attitudes.

I'm beginning to hate the hospital

Just when you think it's supposed to get better it gets worse. Last week I suffered for about 7 days with a fever, chills, night sweats, headache and lower back pain, all the signs of an infection. I was self medicating with Tylenol, ibuprofen and an antibiotic called Ciprofloxacin. We were hoping that the antibiotic would kill the infection and life would go back to 'normal'. But with a beaten down immune system and no energy left after 7 days of hoping things would turn around, we decided to get some professional help. So on Sunday afternoon we headed to the Foothills ER. With chemo, cancer and an infection you don't have to wait long to get a bed. I think we waited about half an hour. Once I got in I got worked up by the ER staff and the general surgery folks.

The funny part was they put me in the psych room. They called it a multi-purpose room and said they put me in there because it's isolated from the other patients (low immune system). It was a depressing place to be. There was no furniture other than the bed. The guards in the adjacent room had to come in when I first got there to disengage the electronic lock on the bathroom door. They also had to unlock a panel behind the bed that houses all the suction, oxygen and other medical supplies. There was no art on the pastel walls and all the ceiling fixtures (fire sprinklers, air vents etc.) had a special low profile design, I assume to prevent their use as a gallows. All in all it was a depressing place to spend a couple of hours.

Once I had seen all the doctors and told them my long and colorful medical history, I got a bed on Unit 72 upstairs. I got a semi-private room (score!) with a quiet, polite and quite interesting guy (score ,score score!). It turns out that unit 72 is the orthopaedic unit. That means it was mostly filled with oldies that had hip replacements or others that had been in car crashes or had suffered other significant bone trauma. My roommate broke his knee kite boarding in Mexico. He must be a hard man because he refused to be treated in Mexico. He got them to provide some powerful pain killers and he got on a plane and came back to Calgary to be treated. That must have been the worst plane ride in his life.

So there were some interesting things about being a surgical oncology patient on an orthopaedic unit. Firstly, since everyone there had broken legs, I was the only patient on the whole unit who could walk. So, I had the run of the place. The kitchen was well stocked, the courtesy phone was never busy and there were no IV pole entanglements with other pedestrian patients. It was kind of nice. Every time I walked by the nurses station they all did a double take. What's that guy doing up and about? Another interesting thing about being on unit 72 is that they had no idea how to take care of me. Actually that might be exaggerating a bit. I think the truth was they were so used dealing with broken legs, they had to really think hard about what to do with me when they came in the room. They kept asking me if I had numbness or tingling in my toes, a typical question for someone with a broken leg but not so critical for someone with a broken arse. So imagine their surprise when I told them that yes, I do have numbness and tingling in my toes. I let them get really confused for a second as they realized a) the stupidity of the question for someone with my issues and b) why the hell are his toes numb if he just had a drain put back in his butt. Then I would step in with the crucial information that actually, the numbness is in my hands too and it's caused by the 6 months of chemo I just finished last week. Don't get me wrong, the nurses were great, it was just an eye opening experience for me into the world of Canadian health care.

So, by the time I got up to Unit 72 it was Sunday night. I spent most of the night hooked up to an IV getting some antibiotics. The plan was that in the morning I would see Dr McLean (he's a colorectal specialist and a partner in Dr Buie's practice) and we would discuss what to do. By this time I had had a CT scan which showed slight growth in the size of my abscess, indicating that it was the likely source of infection. The decision that had to be reached with Dr. McLean in the morning was do we a) put in another drain, b) try to open up the abscess surgically to the rectum so it drains into there, or c) do nothing and wait until Buie gets back from Hawaii in a week. So with all this on my mind I tried to get some sleep.

Unfortunately sleep did not come easily. In unit 72 they have these new beds that are pneumatic. These particular beds are designed to cut down on bedsores by providing perfectly even support for a person in the bed. It accomplishes this by adjusting air pressure in a number of different chambers in the mattress. This air pressure change happens by way of a small, supposedly quiet air compressor built into the bed. This all sounds good in theory but the truth is, for any normal person trying to get a good nights sleep these beds suck. I think they limit bedsores not by their pneumatic balancing act, but by the fact that they are so uncomfortable to lie in, no one lies in one position for too long. After all, if you're tossing and turning and not sleeping, how could you possibly get a bedsore? I ended up unplugging my bed from the wall after a few hours on the first night. I couldn't deal with the fact that this bed thought it knew better than me what 'comfortable' was.

One of the other 'benefits' of these beds is that they have adjustable pressure. The thought there is that if you like a hard bed you can have it hard and if you like a soft bed you can have it soft. In reality there is no sliding scale on the bed, you have to chose between 'soft' or 'hard'. The first night I used the soft setting. It was like sleeping in a pot of oatmeal. My butt sank right through the mattress and came to rest on the metal frame beneath causing my back to flex in a decidedly unnatural manner. The heels of my feet sank in too and the bed had a cocoon-like grasp on my legs and torso. Not only was it uncomfortable, it was hard to escape. It grabbed you and wouldn't let go. Luckily it was unplugged so couldn't eat me for good. The 'hard' setting was equally as uncomfortable. I tried it out on my third day there. Turning the bed to the 'hard' setting, it turns out, was a signal for the bed to self inflate to near bursting. It was like lying on a sausage. If you got too close to the edge the angle of the bed was such that you would role right out. There was no softness at all to the mattress, only a hard-as-rock feel that was not in any way conducive to providing a comfortable sleeping surface. Needless to say, despite the quietude on the unit, I didn't get much sleep. I could have slept better on a love seat.

So when I talked to Dr. McLean on Monday morning he was in a foul mood (to be fair he did have a broken ankle and had to make his way around the hospital on crutches). His suggestion was that we put another drain in, get all the nasty stuff out and then start a course of antibiotics to take care of anything that was left. When Penny questioned the need for a drain he barked back "It's your decision, do whatever you want". I know he's a good doctor and he's treated me before but it was hard to see him shut Penny, my personal nurse and savior, down like that. In the end I got the drain put in. It hurt at the time but there is no pain now (read no pain YET). My fever and all the other symptoms are gone except for the lower back pain which may or may not be related. So far I can treat that with ibuprofen so its manageable. I'm glad to be home now, I don't like spending time in the hospital, nobody does, but I seem to be less and less patient with it as time goes by.

When I got discharged yesterday I was waiting outside for Penny to pick me up and I got a tap on the shoulder.

"Are you Dan Tutt?". I turned around and standing there was a lady I had never met before. "Yes" I said cautiously, "I'm Dan Tutt".

"We read your blog all the time, I just knew it was you" she said.

She then introduced herself as Jan the wife of a fellow geologist at Encana. I had heard that her husband Daryl was battling a similar cancer to mine but we had never crossed paths at work and hadn't talked at all since we had been diagnosed. It turns out they were at the hospital for some treatment and she had decided to go for coffee just as I was leaving. It was a fortuitous coincidence and a tremendous relief to meet someone who was going through the same things I am. Penny got to meet Jan too and there was so much relief in their words to each other having each found someone who understood what it was like to be the wife of a colon cancer survivor. I'm glad you took the risk on introducing yourself Jan. You made our day.