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Thursday, February 25, 2010

Chemo Round 10

Since my last post a lot has happened. With the drain out I can actually move about without any pain but the abscess is still there and could be a constant source of potential infection as I fight my way through these last 3 rounds of chemo.

So I got my drain out on Friday, had a good day Saturday but woke up in the wee hours of Sunday morning with a fever, sweats, chills and a headache - all the hallmark signs of an infection. So I hopped a plane home on Sunday afternoon from Victoria and headed straight to the Foothills emergency department for some good times. I got in pretty fast and was moved up to a bed in Unit 91 very quickly. I went for a CT scan at midnight (to see if the abscess had grown) then went back to my room where I went on some high powered IV antibiotics. I was sharing a room with a depressive paranoid schizophrenic chain smoker and a funny little Greek man who spoke English well (at a reasonable volume) and Greek very well (at a ridiculously loud volume). The CT scan showed no cancer in my liver and the spots in my lung have shrunk to the point that they can't be seen on a CT scan anymore (good news! The chemo is working!). It also showed that abscess in my pelvis was still there but had not grown. As such there was no way (and no reason) to try and put a drain back in.

One other explanation of my symptoms is withdrawal. At the time my drain was removed I had been taking a fair amount of high powered painkillers (oxcodone) and I stopped cold turkey when the drain got pulled out. I had no more pain so I figured I didn't need the drugs but I had forgotten that when you stop oxycodone you need to stop it over a few days or a week not all of a sudden. So perhaps I had an infection and perhaps I was suffering from withdrawal but either way I made it back tot he hospital Tuesday to get juiced up with my 10th round of chemo. I'm finding that I feel pretty good other than the fatigue, nausea, terrible taste in my mouth, sensitivity to cold and the neuropathy. The neuropathy is new. I'm starting to loose the feeling in my toes which is a common side effect of the oxaliplatnin. So now I'm sitting at home (and even out on the deck!) waiting for the good days to come. Only 2 more rounds after this one...
The picture is from our trip to NZ in 2000. We were kayaking Milford Sound in the rain.

Saturday, February 20, 2010

Drain Out!


I finally got that pain in the ass drain pulled out! I called up Dr. Buie and told him I couldn't walk or sit or sleep or do anything and he agreed that pulling it out was the best option. So, I went to the walk in clinic here to have it done. The Dr. on call there had never pulled one out before so she phoned Buie, told him what was up and he gave her instructions on how to pull it. So now I'm a drain-free, pain-fee Dan yahoo! Chemo will likely go ahead as planned on Tuesday but that depends on my blood counts. I head home tomorrow to see Penny and the kids. Its amazing how much I miss them after such a short time. From the reports I've heard they've had a good time at the hot springs at Fairmont (see racquetball picture above!). I can't wait to see them.


Good luck with your chemo on Wednesday Ken.

Tuesday, February 16, 2010

Tough Week


This past week or so has been hell around our house. A day after I went back on chemo Carly, Andrew, Penny and I all got sick with some kind of short lived stomach bug. We spent about 3 days just trying to get through. There was upchuck everywhere. All the beds got ralphed in until we were out of sheets. On one night Carly and I slept on the floor together and Andrew and Penny slept together in Carly's bed. I say slept but of course I don't mean the wistful, restful kind. It was more of a fitful semi-quietude punctuated by a chorus of frequent dry heaves. Needless to say, everyone in the house being sick at the same time really sucks.

Penny and Carly seemed to recover much faster than Andrew and I, and were somewhat able to take care of us is our sorry state. Of course at the same time, I was dealing with all the side effects of chemo and ended up becoming quite dehydrated. In hind sight I probably should have headed to the hospital for some hydration but I ended up just staying home and trying to stick it out. So of course I got very weak, lost a bunch of weight, and at times felt light headed and delirious. My ongoing drain pain also seemed to get worse during that time. I couldn't move without feeling pain and my only comfortable position was lying on my right side. The pain meds I was taking didn't help much unless I took lots and then I just got high and fell asleep. Now getting high and falling asleep may not sound that bad but, like everything, it starts to wear on you after a while - plus it got in the way of watching the Olympics. On one occasion I took a bunch of pain meds and fell asleep on the couch downstairs while the kids played. When I woke up, Andrew had retrieved the pump soap from the bathroom and had emptied the bottle, on himself, on his clothes, on the couch and on the floor. He actually woke me up pointing to the empty bottle and asking for more. At least the soap smells better than barf.

Right now Penny and the kids are in Fairmont Hot Springs for the week enjoying some skiing and swimming. Since I can't ski, swim or even walk I hopped on a plane and came to Victoria for the week to spend some time relaxing/recovering with my parents. Hopefully things will improve while I'm here and I can go home refreshed and ready for round 10 of my chemo which should be a go for one week from today.


Well, that's all for now. Back to my Olympic viewing position on the couch.

Tuesday, February 9, 2010

Round 9 and Expensive Drugs


I got juiced up this afternoon with chemo for my 9th round. It went well but it could have been better. Andrew was up all night last night barfing his brains out. Every half hour or so he would wake up and toss his cookies. Finally after we ran out of sheets for his crib we brought him into our bed. This was marginally better than having to get up and walk to his room every half hour as it did result in our getting some sleep. He continued barfing all day and couldn't hold anything down. All he wanted was water or milk or coke or beer to drink but whatever we gave him came right back up. Poor guy. So Penny and I were not in the best shape for chemo. We were very tired but managed to stay awake playing crib and chatting with nurses and a couple of other young people there that were recieveing treatment. There was another guy there from EnCana just starting out on his battle and a young mother doing her first round of chemo for her Hodgkins lymphoma. It's heartbreaking to see new people being diagnosed and starting treatment. Make no mistake - cancer is a horrible disease.

At my doctor appointment this week we discussed using a drug called neulasta. This particular drug is used to boost the white blood cell count of people on chemotherapy. It acts by stimulating blood cell production in the long bones and has proven to be very effective. My blood counts haven't been recovering as well lately as they did early on so we opted to give the neulasta a try. The only catch is it's VERY expensive ($2600.00 PER INJECTION! - one injection per round of chemo). In order to pay for it you either need deep pockets, or a good great prescription drug program. Luckily the program I have through work is very comprehensive and pays for the entire cost of the drug! Of course I consider myself very lucky to have been working for a great company like EnCana when I was diagnosed. Also, I get my prescriptions filled at Safeway, where you get air miles on prescriptions. In fact right now they have a incentive program on that rewards you for each prescription you fill. It gives you 7x the normal number of airmiles. So when I went to pick up my $2600.00 prescription, I also got 903 airmiles which happens to be enough for one return ticket to Victoria in the off season. With three more rounds to go and possibly three more injections of neulasta, I could have enough air miles to take the whole family to Victoria! Imagine that. Apparently it does pay to have cancer!

On the butt drain front things are back to the painful and uncomfortable. I seem to have irritated it again when I flushed it out this afternoon. I'm now back to the pain, difficulty walking and difficulty sitting. Of course that has lead to the use of oxycodone, a pretty effective painkiller. I guess I'll just soldier on through these last 4 chemo treatmets and worry about a solution for the drain when I'm all done.

Friday, February 5, 2010

This Post Brought to You By: Always...

Warning: Frank discussion of a broken ego below. Consider yourself warned.

Now that I'm home and somewhat recovered from my lack of sleep in the hospital (I had a four hour nap today AND yesterday!) I can discuss some of the funny stuff that happened when I was in the hospital. Well actually I hope it will be funny for you. I can laugh at it now but it was not so funny at the time.

The procedure I had on Tuesday was written up on the consent form as "explore pelvic abscess". It sounds harmless enough when it's written that way but the truth of the matter is its much more - what's the word? - raw than the pedestrian title would seem to indicate. I didn't ask too many questions about what the procedure entailed but suffice it to say I was glad to be asleep for it. As I understand it they went "exploring" up my gluteal cleft with a variety of high tech instrumentation that would make any video game junkie jealous. They were looking for the entrance to the fistula (fancy doctor word for passageway) that connects my infected abscess to my rectum with the intent to widen the opening connecting the two. They did not find what they were looking for but they did spend 30 minutes "up there" doing something. My doctor said they had a good look around (did he confuse my rectum with a show home?) but couldn't find what they were looking for.

Following the procedure I was sent back to my room to recover. Given the fact that all they did was have a look around, I sure had a lot of recovering to do. Apparently in the process of exploring uranus like Captain James T. Kirk, they used a significant amount of jelly-like lubricant (thank god). Now, this particular lubricant is apparently hard to retain for even the most conditioned of sphincter muscles. Given that I haven't used mine in a year I didn't stand a chance. I've been leaking lubricant like a bad oil change ever since. To make things worse, I've had to wear a pad. Not just any pad. A freaking pillow with wings. The nurses all had a hilarious time laughing at me trying to get it in the right spot. I had a hard time getting the wings to wrap around (I've seen the commercials) and still have the pad in the right place. Apparently those things are not designed for leaky ani (I just made that word up - it's the plural form of anus). I seem to have it all sussed out now at the expense of my ego. My transformation to a woman is nearly complete.

Good times...

Wednesday, February 3, 2010

More About Yesterday's Surgery

I'm home now (Wednesday night) and feeling ok which is good given all I had done to me over the past 36 hours. As Penny mentioned in her post below, the surgery was unsuccessful. The doctors couldn't find the connecting hole between the abscess and the rectum and came to the realization that even if they did, the rectum and abscess are too far apart to open up the connecting tract and make them one. If they did such a procedure, there would be a high likelihood of severely reduced colon function when they reverse my ileostomy. So the next best option (to keep me on track with my chemo) is to try the glue again. We tried 8 attempts at glue before last fall and they all failed. They tried a ninth one today which I hope will work but given a) the fact that the first 8 didn't work and b) I'm on bevicizumab - a type of chemotherapy notorious for making healing difficult, those hope aren't high.

We met with Dr. Buie this evening and he apologized profusely for forgetting to come and see us yesterday. We were so mad a him yesterday but he diffused us (even Penny!) right away with some kind and honest words. Given that surgery didn't work and glue likely won't work, the options for me are limited. Following chemo we will pull the drain (yes I'm stuck with it for another 2 months!) and see if I heal by myself. If that doesn't work then we may have to discuss removing the whole mess (abscess and rectum) and having a colostomy. Colostomies are generally easier to live with than ileostomies but obviously we would like to exhaust every possibility before it comes to that.

The next step for me is getting back in touch with my chemo doctor (Dr. Lupichuck) and seeing when I can get going with my remaining 4 rounds of chemo. It could be as early as next Tuesday if all goes well between now and then. I really just want to get this chemo done and move on with the rest of the plan.

To you Mr. Drain I say Bah Humbug!

Update on Surgery

Well I know you've all been wondering how things went yesterday. Would you believe Dan and I have been too! What a day. I can't express how angry (there I'll say it, ANGRY!!) I am with what happend yesterday. Dan is fine, and in the same condition he was when he went to the hospital yesterday, in pain with a drain. Yup, still has a drain. Dan was under for all of 20 minutes. The Dr's did 'something' and he awoke to a nurse telling him he was staying over night. Dan and I waited all day (11pm) to find out nothing. No plan. No known reason for staying in the hospital, not knowing why he still had a drain. Dr Buie was operating until 8:30pm last night. Long day for him no doubt. However he snuck out of the hospital before coming to see Dan. The resident making the rounds this morning finally filled Dan in.

Apparently the hole was so small (WE KNOW!) it was hard to find. Dr. Buie thought another glue treatment was in order. So Dan's at the hospital again today, waiting to get another glue treatment. We are so confused. Most of you will recall the MANY attempted glue treatments in August and Septmember. Weekly trips with weekly failures. The problem is the area is so damaged from radiation that it just doesn't want to heal. Add to that the chemo drugs Dan has been on which greatly reduce your ability to heal and he should have even less luck this time. I think the most frustrating part of this is not having talked to a Doctor about the course of treatment. Being almost forced into this. It's almost as though Dr. Buie has forgotten that we've tried this, we tried hard to get the glue to work. Trying to fix this little bitty tiny hole has cost us a whole YEAR!

So the update is there basically wasn't any surgery yesterday, there was an exam. Dan as always is in good spirits, though he was ready to yank out his IV last night and check himself out at 11pm. We are hopeful that Dr. Buie is coming to see Dan today, and that he will be home tonight.

This was NOT the plan.

Monday, February 1, 2010

Vancouver 2010 and its 6 billion dollar bill

The upcoming Olympics in Vancouver have been the talk of that town for years. Now with less than 2 weeks to go until the opening ceremonies the excitement is reaching a fever pitch. It seems that in the past decade or so the Olympics have become more than a medium to champion amateur sport, they have become a competition between host towns/countries to out-do each other, not on the podium but in showcasing their attributes for the good of business and the economy. That, most certainly, is not what the spirit of the Olympic games is all about.
The cost of the games in Vancouver/Whistler will be somewhere in the 6 billion dollar range, all of which will come out of the pockets of tax-paying British Columbians. Supporters of the games argue that that is simply the price we must pay for the honor or hosting the games and that Vancouver must put its best foot forward as it is showcased on the world stage. Critics argue that the amount of money being spent on the games is nauseatingly large and could be put to much better use than building ski jumps and a speed skating oval.
I find myself perched on the fence between these two points of view. As someone who was born and raised in Vancouver I take pride in the fact that Vancouver will be front and centre on the world stage for 2 weeks in February. Vancouver has proved itself a deserving host of the games and is arguably ground zero for winter sport in Canada. The Vancouver-Whistler corridor is one of the most beautiful drives on the planet and is bursting with options for Winter (and Summer) recreation. The games will undoubtedly attract adventure tourists from around the globe for years to come bringing with them their almighty dollars.
On the other hand, 6 billion loonies is a lot of dough for 2 weeks of playing in the snow. The security budget alone for the games is near the one billion dollar mark. Estimates on the economic benefit of the games to Vancouver, Whistler and BC as a whole vary widely. Some reports peg the economic benefits at 5 billion + but more recent, conservative (and more realistic?) estimates place that number closer to 1 billion. Either way it's short of the 6 billion the games will cost to put on. That money could be used for lots of things of more benefit to British Columbians than building a bobsled track. Matthew good composed a list of potential spending alternatives for the 6 billion dollars. Here they are:

Health Care: The cost of the Olympics could have funded the construction of 6 state of the art hospitals to replace St. Paul’s.

Seismic Upgrades For Schools At Risk: The cost of the Olympics could have funded the entire budget of the seismic-upgrading program four times over for schools in British Columbia. As it stands now, only 32 out of hundreds of elementary and secondary schools have been upgraded as of last year.
Education: The cost of the Olympics could cover the four-year tuition fees of 345,383 UBC arts students – or 314,004 UBC science students – or 287,853 UBC engineering students – or 100,963 UBC medical students.
The cost of the Olympics could pay the salaries of UBC’s 587 full professors for 73 years.
The cost of the Olympics could cover the cost of educating every elementary and secondary student in the Province for roughly a year and a half.
Government: The cost of the Olympics could fund the Premier’s office for 500 years.
The cost of the Olympics could have paid the entire public service payroll of British Columbia for 2 years.
The cost of the Olympics could have allowed the Provincial government to waive property tax for 6 years and sales tax for over a year.

The cost of the Olympics could have funded all of the social welfare programs on the Lower East side – including food banks and social housing – that receive Federal, Provincial, and Municipal funding for more than 16 years.

The cost of the Olympics could have built roughly 20,000 units of social housing.

The cost of the Olympics could have afforded the city the ability to hire 3,000 new police officers and pay them, with full benefits, for 20 years.

Security: On average, every family in British Columbia will be paying $300 towards security costs during the games. Spread out over the country’s entire population of 34 million, every Canadian would be paying $26 dollars.

During the games, the military presence in Vancouver will be the largest since the Second World War.

The total cost of security is more than VANOC’s initial assessment of what the Olympics as a whole would cost.

$79 million dollars of the security budget is being used to house military and police personnel on three cruise ships.

Security costs include $29 million dollars for new computers and $6 million dollars for new radios.

BC Ferries will receive $15 million dollars for security upgrades even though no events are taking place on any of the coast islands to which they sail.

The Canada Border Services Agency is receiving $15 million dollars in supplemental funding.

So what do I make of it all? I don't know. I'm looking forward to being able to watch the games all day, every day while I'm recovering from surgery and doing the last few rounds of my chemotherapy. The Olympics holds a place in sport that cannot be duplicated in its excitement or world involvement and comes around only once every two years. Having the games in my hometown only adds to the excitement. I look forward to seeing my childhood winter playground showcased on the world stage and our Canadian athletes giving their best. But in the back of my mind during those 2 weeks I know there will be a dark place where the guilt will reside and I will keep asking myself the same question: Was this really the best possible use of 6 billion dollars of taxpayers money?

Surgery Tomorrow

It's a good thing my surgery is tomorrow. My butt hurts almost all the time and I just took the last of my painkillers. My surgery is at 8:25 which means I need to go through admitting at 6:25. That's a full 3 hours before I got up today. It will be a bit of a shock but you gotta do what you gotta do. Luckily my dad is coming out to help manage things on the home front over the next few days. Penny or I will update tomorrow night after I get home. Bring on the rectal repair!