I am clean. This is my first camping trip. I am newly ironed. This is a strange and nearly impossible feeling to capture. Even as I sit here in the hospital eating horribly overcooked carrots and shamefully dried out salmon, I am incredibly clean and new. The newness is more than the fact that my colon is actually, physically cleaner than it was the day I was born; more than the fact it isn’t contaminated by this atrocious hospital food. I eat and create no shit. Literally. Everything is brighter. The thick clouds rolling in over English Bay in the dusk of early evening are bright clean water. I am clean, fresh and new from the core of my being. I am, in a very real way, reborn. But my stomach is so full I think I might puke.
Dr. Carl Brown and his entourage of students came by this morning to tell me how well the surgery went. He says he is very happy with the results and is sure he got everything he went in there after. He also found some considerable clumps of dead cancer terminated by the radiation. A very good thing to see. He said I gave him a pretty hard time, being a big man with a narrow pelvis. I promised I would try to be wider next time. He said that is an impossible promise to keep. I am admonished.
The events of last two days would easily fill a book but I’m not quite up to that task this evening. So I will try to hit the high and low points for you. On the high end they are keeping me sufficiently high. The press of a little black button adds a healthy dose of morphine to the saline drip. They had planned to fix me up with an epidural to numb everything between my sternum and pelvis, but, being the wimp (or whimp) I am, I passed out on them and they had to postpone that idea and revive me with some nice iv drugs and oxygen. Then I threatened to puke on them and they pretty much decided to abandon the whole epidure-idea.
Despite my lack of cooperation they wheeled me into the operating room and proceeded with the most important part of plan. It was approximately 0 Kelvin in the room. I thought they were either preparing me for storage or there was some esoteric medical purpose to conducting surgery in subarctic conditions. Turns out those in the know, the doctor, had concluded that the thermostat in that room is a placebo. I needn’t have worried about freezing my bits off because within a few moments it was 6 hours later and I was being very reluctantly awakened by a nurse in Recovery. She was persistent. I was reluctant. She won the day.
Once I had regained a general awareness of self, I patted my tummy to locate the stoma bump. It was on the left. I had shat my last shit. The left side is the colostomy. The worst case scenario. Definitely a low point.
What happened in the lost hours I can only relay by hearsay but I’m pretty sure the information is reliable as I have the scars and the bag on my belly to back up the unlikely story. Dr. Brown, with Dr. Gill as backup, went at the job by the most direct route. Splitting me open from the bellybutton down, they reached in there and took about a foot of large intestine along with all of the cancer both live and irradiated. I found out later that it occurred to the good doctor Brown while he was in there that I am likely to have liver surgery sooner than later. So he had the good sense to put the ileostomy where the colostomy belongs so that it is out of the way for the liver doctor. We have, my friends, no less than 100% success. He apologised for the scare it gave me. I forgave him, as those points beat the hell out of even the morphine high.
So I need a new low to hit on. Other than the food, all I’ve got is the roommate situation. Turns out all the semi-private rooms were full so it was into a ward room after all. Under the impression that I was sporting a brand new colostomy bag, I really didn’t give a shit about the room I was in. I learned to care when they brought in the guy who would spend last night and all of today directly across from me. He was in some serious pain and the nurses had instructions to administer morphine at a particular dose every 4 hours. The trouble came from his apparent tolerance to the drug and the fact that the effects didn’t last anywhere near 4 hours.
He was a moaner. Now that may sound to you like a petty complaint and I really should be more understanding. Especially with my own recent familiarity with exactly the sort of pain he was in. But, if he hadn’t been very recently drugged, this guy moaned with every single outward breath. No exaggeration, I would barely doze off in the sweet silence of his brief morphine high and he would start up again. I firmly believe his litany was completely voluntary and meant to chastise the nurses for what he perceived as irrational servitude to authority. Last night may very well be the longest night I have ever had the displeasure to experience. I was exhausted by morning. Almost as exhausted as you must be from reading those last few sentences. Then he moaned all day until his doctor came and changed the nurses’ instructions. He abated into morphine oblivion not ten minutes before my nurse came in and told me I was moving to a semi-private. Where my new roomie sat in stone faced silence while his mother fussed over whether any of my visitors were carrying a germ. A welcome change.
Which brings me to a BIG thank you to all the Trustys and the two stepdaughters who were here to keep my spirits up and, more important, help Wendy through a stressful couple of days. We are blessed. As a bonus, stoneface and germaphobe mom have gone home having declined the plan suggested for him by Dr. Brown (Go Figure!) and I have the room all to myself tonight.
So it all boils down to being pretty sure I’m cancer free below the bellybutton and I’ll sleep in a private penthouse room with a view of the city lights. Pretty tough day huh?
They paved Paradise and put up a parking lot…
I’ve been thinking about shit a lot lately. That’s not meant to say I am thinking about a lot of shit, although that is true as well. I do have a lot of things on my mind but what I mean to say is that there is a lot to be considered about the simple act of moving the bowels. I’ve never taken the time, until now, to really consider this.
There are few things in life as satisfying as a really good dump. Its even one of the three morning esses; Shit, Shave and Shower. The morning after a night of excess you can always tell when the hangover is gone by that first good crap. It defines an entire phase of Sigmund Freud’s theory of human development. It even measures how much we care about each other and our facebook posts; whether we give a shit or not.
Dr. Brown says I stand a 50/50 chance of never giving a shit again. If I wake up with the bump on the left instead of the right, it will mean for the rest of my life I will never know the simple pleasure of a satisfying dump. I find it a bit sad that my very last one might be a bout of extreme diarrhea caused by industrial strength laxatives in preparation for surgery.
I just can’t imagine that there will be any feeling of healthy emptiness from disposing of a colostomy bag. No “Ahhh, that felt great, now I can get on with my day”.
On the other hand, there will be no more rushing to find a bathroom in those urgent moments. I’ll never have to deal with bowel incontinence. No adult diapers for me!
So, what conclusion have I reached about this shitty subject? Alimentary my dear Watson; I give a crap about giving a crap. No Shit Sherlock!
It was a busy day yesterday at the pre-admission clinic in St. Paul’s. As you can see, their empty saint nooks are much smaller. I don’t know how they expect a person to recreate an acceptable Saint George in such a small space.
As I expected, the day started with a thorough review of my history and a double-checking (for the fourth time) my consents. They take great care to be sure I am not some religious zealot who refuses blood transfusion. Slip the juice to me Bruce!
The anesthesiologist recommended an epidural to be left in for a few days after the surgery to numb everything from the bottom of my ribs to the top of my pelvis. I didn’t know they could be that precise. It seems they have discovered that the more comfortable a patient is, the faster they heal from surgery. I have been instructed not to be a tough guy; like there was any danger of that happening. Opiates are my friends.
The travelling blood test nurses came to visit and took away eight vials. I’ve never seen them drain so much blood out of me. Luckily I had enough left to stay conscious for the rest of the visit.
The stoma nurse came and measured me for cutting a new one. She painted two virtual holes on my abdomen, with a high tech Sharpie, where Dr. Brown will choose to place either a colostomy or an ileostomy, depending on the success of the surgery. If he can reattach the colon after resecting about a foot of it, I will wake up with a bump on my right abdomen; a temporary ileostomy created with a loop of small intestine. If not, I will awaken with the bump on the left; a permanent colostomy.
They never provided popcorn with the movies they showed us. So if you ever have the pleasure, be sure and bring your own. The films, along with copious stacks of flyers, provide repeated instruction on the pre and post operative expectations, preparations and exercises. It gets a little monotonous. The stoma care video was helpful. It was the first time I saw a real stoma and how to manage the bags. Its not as repulsive as I thought it would be. Close, but not quite. My biggest fear is that I will wake up with the bump on the left.
The next adventure was a trip to the 4th floor to visit a very grumpy EKG nurse who confirmed that I have a heart and it beats sufficiently to circulate the little bit of blood I have left. Very reassuring.
Finally, a brief tour of the medical imaging department to get xrays of my lungs, and we were free to flee. We fled.
I’m having some difficulty thinking philosophically about what has become a little too real. I can’t remember ever being this apprehensive. Imagine the surgeon’s surprise when he cuts me open and releases all these butterflies.
We are preparing to leave for St. Paul’s Hospital for an afternoon of blood tests, procedure discussions and, I’m sure, listening to the myriad ways they might kill me next Friday. Maybe its my law background motivating extra caution but they sure seem to be going beyond the norm to be sure they have informed consent. I’m just glad the chances are minimal of any of the deadly complications they warn me about occuring. If the odds were proportionate to the amount of time they talk about it, I would be dead already.
Wish me luck today. I wish they would tell me how to study for these tests.
Despite my occasional chemo brain bitchiness, my brave and determined wife has been there for me every day of this arduous trip. She shows no sign of fatigue or despair though the burden must be terrible to bear. Hey! I’m a poet! And she is my muse.
Happy Birthday Wendy Gould. I could never get through this without you by my side.
I love you.
January 20th for the pre-surgery appointment. I’m to bring all drugs, vitamins, herbals and over the counter medicines I am taking so they can see if there are any contraindications that might kill me. I am reassured by the thoroughness.
They wanted to know if I was ok with being on the ward or do I want a private room at 200 bucks a night! I gotta admit it scares me spitless to share a room with a bunch of sick people with their germs, microbes and other sick breathy stuff for five days after my torso has been carved in two. I have visions of flesh eating viruses attacking my abdomin. No choice though. One thing we have learned most thoroughly is that, despite socialized medicine, cancer is very expensive. Imagine your income suddenly slashed by half and then add a whole bunch of drugs and incidental expenses. As it is, we will be frighteningly deep in debt by the time I am cured or dead. So regular ward it is. At least I’ll have people to talk to.
Speaking of socialized medicine, I have heard many stories about how terrible our health system is. Poor treatment, long waiting lists, rude and obnoxious staff; the stories seem endless. Well I am here to tell you, those bear no resemblance at all to my experience. Maybe cancer is different (I imagine it does get a lot more funding) but my treatment has been swift, efficient and courteously delivered by everyone involved. I am impressed. I can’t imagine how we would cope if we lived in the good old USA.
Next time you talk to a doctor, nurse or hospital worker, thank them for me. I admire all of them for the work they do.
Okay everybody, this is your Save-The-Date message. Don’t plan anything for January 29th that requires the use of your fingers. I’ll be asking you to keep them firmly crossed. Thats right! I have a surgery date.
Dr. Brown’s office called this morning with the news. They have been looking for a second pair of hands to assist and they found another surgeon who will operate on a Friday. The nurse who called actually asked me if I would be available that day. I laughed. She said I would be surprised how many people say, “that isn’t a good day for me”. I think that’s astonishing. What could be so important that a person doesn’t have time that day to have the country’s best surgeon save his life?
I am told I can expect another call later today or tomorrow for a pre-surgery appointment with the OR nurse, stoma care training and anesthesia information. They’ll also be doing blood tests and x-rays to make sure I’m healthy enough to operate on. It seems strange. I need to be well enough to undergo the procedure but sick enough to need the surgery. Thank goodness I have my health.
Sounds like the pre-surgery will be a busy day. She said plan to be there for 3 or 4 hours. “Gee, I dunno”, I said, “I am supposed to have lunch with my sister that day.” She laughed. We’re even.
I was back in the hospital yesterday, all by myself, to have my Power Port flushed. If it isnt used for a month they need to run some saline through it to make certain it doesn’t get plugged or heal over. It took the nurse ages to get around to doing it and then the whole process took about 30 seconds. I get a lot better attention when my Wendy is there.
I may have forgotten to tell you about my follow up appointment with the radiation oncologist. He asked me a few questions about bowel movements, pain and surgery plans. “Near normal, none and coming soon”, I answered. He pronounced the radiation treatment a success, told me to call him if I need help and reassured me that we’ve created the best situation achievable for the surgery.
I told him about the MRI results and the surgeon’s concerns about size and location. With MRI results from the middle of December he said there was a good two or three additional weeks of cooking after that scan. So the reality will be better than what the surgeon saw in those images.
I’m hearing a lot more positives from these doctors lately. Sounds like they think I have a real shot at coming out of this alive. Since that is, after all, the goal we are aiming for, I’m going to believe they know what they’re talking about.
I had four part prescription for all sorts of special drugs to get my bowels ready for slicing and dicing. I had to take it to a special “compounding” pharmacy. Got that done yesterday too. So I am all set to receive the phone call setting the date.
One of the four items is apparently unavailable. Its a Carbo Load compound consisting of Maltodextrine and sugar. I called the doctor’s office to ask if there was an alternative and she said to drink lots of fruit juices; I just need to consume lots of natural sugars. It seems they don’t want me to starve to death on the operating table. There isn’t much risk of that anyway. I gained about 15 pounds over the holidays.
If I knew the date of the surgery I would be counting the days with a mix of eager anticipation and nervous dread. I’ve never had major surgery before. Maybe I should go in for an appendectomy or something just for the practice. There are so many new things happening to me that its difficult to process it all. The surgery itself, general anesthetic, and most daunting of all, a whole week of hospital food. Maybe that’s why they want me to carb load before I go in.
I think I’ll have a snack.
Sometime in its history, St. Paul’s Hospital removed all of the catholic saints from the hallway alcoves. Wendy thought we should put one back. Unfortunately the result was more mortific that beatific. At the very least, my Saint George impersonation ought to have been holding a sword, or maybe just a scalpel considering the dragon I seek to slay.
The visit with Dr. Carl Brown was a bit sobering but relatively positive. He had reviewed the MRI results and was concerned about the location and shape of the main tumor he is after. I seems somewhat larger than expected but he says it has probably shrunk some since the MRI because the radiation treatments would still be working for a couple weeks after the scan. It’s shape looks like it extends backwards towards, but hopefully not into, the bone.
He remains confident that he can get it all out in one operation. We’ve got one shot at this. He can’t employ any of his fancy new laparoscopic procedures because it is just too big. So we go old-school on this sucker and open me up like a book to get at it. He thinks he’ll only need to take about a foot of colon and some surrounding tissue, so I figure that leaves about four feet to do the job that the colon does. Surely I was designed with an extra foot or two of large intestine. And four fifths has got to be better than three fifths, right? Right.
His biggest concern is that the tumor is dangerously close to the exit point and saving bowel function might not be possible. He estimates a 50/50 chance that I will spend the rest of my life wearing a bag on my abdomen. What it all comes down to is that if he can’t save the one I have, he is going to literally cut me a new one. I sure hope my luck holds for that coin flip.
There is really no difficult decision here. He was clear about that. The choices are, live with whatever results the surgery brings or wait for the cancer to kill me. I choose the option that includes living; It’s better for my health.
His staff are still trying to fit me in later this month or sometime in February. In the meantime, I wait and try to stay relatively healthy.
On the positive side, I know, because I’ve been sitting on it, that there has been a lot of change in there since the MRI. So hopefully it will all be better than he expects.
I did find out that I can get copies of all of the various scans and tests. Dr. Brown even recommended that I keep copies with me so any doctor I see can access them. I’ll ask for those when I go in for the follow-up appointment with the radiation oncologist this afternoon. If I can make any sense of the images, I will post before and after pics.
So, we all know mine. What is YOUR goal for the New Year?