Maui

Tutt family, wet., originally uploaded by DPC Tutt.

Wow. Maui was great. I sure wish we could have spent about 4 more months there.

I think Maui is the hot equivalent to Whistler. Lots of fancy hotels, restaurants and shops. Surf bums and CEOs and everyone in between seems to like it there for good reason. There is no shortage of fun things to do for people of all ages. Our trip was definitely focused on water, either the pool or a beach. We made it into the ocean on everyday but one (the rain day) and had a blast. We stuck mostly to the beaches that were protected with little or no surf. On our first or second day we went to Big Beach where the wind was blowing and the waves were big (at least they seemed big, maybe 3 feet?). In those conditions it was hard to swim safely while holding a child. I drank a fair amount of salt water that day trying to swim with Andrew. We didn't do any of the driving trips on Maui like the road to Hana or the Haleakala volcano. The kids just wouldn't have appreciated it. I guess we'll just have to go back and do those another time.

Our condo (Papakea on the north end of Kaanapali beach) was good and was near a number of good beaches and restaurants. The only complaint we had was that during the day, construction noise from a unit two floors above made relaxing while the kids napped difficult. Carly loved going to the pool. She liked to play with the other kids and got pretty good at floating around by herself with a pool noodle. Andrew loved being in any type of water and would flap his arms and kick his legs laughing the whole time.

Penny and I both enjoyed the time together as a family. It was great to be away from "life" for a while and have a few days where you're most challenging issue was which beach to go to or which place to go for supper. Neither of us got much time to really enjoy the fruits of Maui (surfing, snorkeling, dining without children) so a future trip may be in the cards 'sans enfants'.

Travelling with the kids went much better than I expected. Carly didn't nap on the way there but was very well behaved. She watched tv, played some games, read some books and took lots of walks up and down the isle. I think she really enjoyed using the "tiny little bathroom at the back". Andrew was a dream to travel with. For the most part it was like having an extra piece of carry-on baggage. He spent half the trip on the way there and the ENTIRE flight on the way back sleeping under the seat in front of Penny. He was really a trooper. Out return flight was delayed a bit by snow (in Vancouver not Maui!) but other than that our travels went without incident. Also, I didn't have any medical issues on the trip. It was a great trip. You can count on us going back at the earliest opportunity!

Strength in Numbers

For the past 5 weeks I have been participating in a group therapy session for G.I. cancer patients. The session focused on managing the stress that comes with a cancer diagnosis and the ensuing treatment. It was facilitated a couple of great counsellors from the department of psychosocial resources at the Tom Baker Cancer centre. Our group consisted of 7 individuals who met once a week (this past week was our last session). Each session focused on a specific topic (anger management, meditation, coping strategies etc.) with ample time for discussion and sharing individual stories.

The group functioned really well both for the structured and unstructured discussions. I was the youngest participant and the only one who hadn't yet undergone surgery and extensive treatment. This meant that I picked up lots of tips and tricks form the other more seasoned participants. I even met a woman who had the same surgeon as me (Dr Buie). She had a very positive surgery experience and had nothing but good things to say about him. That gave me a lot of confidence given what is in store for me in the new year.

One of the most interesting parts of the group discussion was to see how different people react in the same situation. It made me realize that what I THINK my reaction is to a certain situation can be different than what my REAL reaction is to a certain situation. I guess what I'm trying to say is, I see myself as a pretty laid back guy but in reality that is not always the case (I get stressed like anyone else). One of the key skills we learned to deal with this stress, is to break the stressful situation down into the controllable and uncontrollable aspects. This allows you to focus your efforts and concern on the things that you have a say in and prevents or minimises the limitless worry one can feel when considering the uncontrollable aspects.

I hope nobody else ever has to get a cancer diagnosis but if it does come to pass for you, don't hesitate to talk with a person or group of people who are in the same situation. There is definitely strength in numbers.

Maui - TOMORROW!

The Maui forecast looks pretty good! We are pretty much packed and ready to go. It will be interesting travelling with 2 kids but the fun we'll have at the destination will be worth the trip I'm sure. A big thanks to all of those who have lent us baby gear, travelling gear and snorkeling gear. A really big thanks also goes out to Tracy & Bailey & Cody who will be looking after things on the home front while we're sunning ourselves.

Our thoughts are with Shawndra right now. Hopefully things sort themselves out and you're back home with your family soon.

Concert time!

Green frog and a purple cat, originally uploaded by DPC Tutt.

This past weekend we had our fall concert for Carly and Andrew's music with your baby classes. One of the benefits of being home now is that I can take Carly to her music classes on Thursdays (Penny goes with Andrew to his on Tuesdays). I think I took Carly to all but one of the classes this fall. It was great fun for both of us and was somewhat therapeutic for me. I found myself looking forward to it every week. Even when I wasn't feeling great I made myself go and always had a good time.

At the concert, Andrew and Carly both participated in the "Brown Bear" song (Carly wasn't in the class but helped out with the performance - see picture above) and Carly also performed with her class. Carly's Thursday class did 2 songs: "Autumn leaves" and "Sway/jump". The funny part is, both songs required singing and dancing on stage with scarves in front of a few hundred people. Now that sounds like tons of fun if you're three but for the dad's in the class (parents participate in the concert too) it was cause for minor concern. In the end only one dad chickened out (not me!) and the concert went on in style. It was great fun. Thanks Patti!

Video for the weekend: Last Lecture

This youtube clip is long but worth watching. It's a clip of a professor (Randy Paush) that was diagnosed with terminal liver cancer. This is his last lecture. It's moving and heartwarming and well worth watching. Thanks Brett for pointing this out. Have a great weekend.

Maui here we come!

Penny and I have never been to Maui and have always wanted to go. So when my surgeon said "now is the time" we took him seriously and went that afternoon to book a trip. We go on the 6th of December and come back on the 18th for a total of twelve hot, sunny, fun Maui days. This coming week will be crazy packing and organizing but it will be worth it. Hopefully Dr Buie can schedule my CT scan, MRI, blood work and meet and greet with my liver surgeon either before or after we go. Fingers crossed!

Trouble

Trouble, originally uploaded by DPC Tutt.

Andrew started crawling this week. This could be trouble...

No surgery date yet...

Today I met with my colorectal surgeon Dr. Buie to discuss the details of my upcoming surgery. We didn't book a date for the surgery yet but I did get lots of useful information about what's going to happen. I should also say it is a great relief that Penny and I both really like Dr Buie. He's polite, calm, knowledgeable and most importantly he made us feel like he had all the time in the world to discuss surgery plans with us and answer all of our questions. I hope I run into more doctors like him on this adventure.

Today's discussion focused on the details of the surgery. Pre-surgery I will need to have an MRI and a CT to see what damage, if any, the radiation and chemo did to the tumor. I will also have to have a consultation with Dr. Sutherland (my liver surgeon) to discuss the options and timing of my liver surgery. Depending on what Dr Sutherland decides, I might have liver surgery at the same time as my colorectal surgery, or it may be after. He may also decide to do some exploratory or partial surgery on the liver. Once all the tests are done and my consultation with Dr Sutherland is complete I will meet with Dr Buie again to arrange a date for surgery. He did say that surgery will be some time in January.

Dr Buie also discussed a number of other interesting pieces of surgical information:

• I will not need an NG tube before surgery and probably not after either.
• Recovery from surgery will take about a week in the hospital (at the Foothills in unit 102 or 71) and then a month at home.
• I will likely need a temporary ileostomy that would be reversed ~3 months after the initial surgery.
• There is a chance I will need a permanent colostomy.
• He also said if you want to travel, now is the time. He said if we booked a trip he would try and work the tests and Dr appointments around it. Maui anyone?

I'm feeling much better this week with most of my bodily systems functioning normally again. I have a few outstanding complaints but they are minor compared to the discomfort I was in 3 weeks ago. I will update some more as the tests and appointments get checked off the list.

If you haven't seen the latest BOND show you should go and see it. It's a lot of fun.

At high risk? Get screened

I wanted to bring everyone's attention to the November 17th issue of McLeans which had a number of interesting articles about digestive health including a discussion on colonoscopies by the Canadian digestive health foundation which is well worth a read. It underlines a number of important points with regard to colon cancer and the importance of colonoscopies that I have discussed here before but I figured it might be worth talking about again.

The most important point that the article makes is that "people at high risk should be more afraid of not having a colonoscopy than of having one". People at high risk include everyone over 50 and anyone over 40 with a family history of CRC. One rough statistic provided by the CDHF suggests that only about 20% of eligible high risk candidates take advantage of the screening. That is particularly worrisome given the fact that in its early stages when it is most curable, CRC has no real symptoms. Regular screening using a colonoscopy can catch CRC at an early stage when it is 90+% curable.

So why doesn't everyone who can get screened? I think the answer to that question is two-fold. Firstly, no-one like to discuss those parts of their body with anyone, even their doctor. And secondly, it is human nature to do everything in our power to prevent a stranger from cramming 5 feet of fiber optic cable in our "out" door. My rebuttal to both points is simple: Get over yourself. If you are in the high risk category its much more scary not to talk about it and not get screened.

Although getting a colonoscopy is right up there with a root canal on the "Least fun thing to do ever" list, it's actually not that bad. In fact I would rather have a colonoscopy than a root canal. The worst part of the entire operation is the "clean out". This is where you don't eat for a day or so before the test and must consume 4 litres of fruity tasting salty water that acts as a flush to clean the pipes. Once you're in the procedure room the doctor explains what he's going to do and the nurses get you lined up lying on your left side. At that point they give you a short acting amnesia-inducing drug. This practice is called conscious sedation. It is a low risk way to minimize your discomfort during the procedure by making you more relaxed and causing you to not remember what has happened. It's pretty fun. The next thing you know you're lying in the recovery room. They say I was awake the whole time but I don't remember a thing.

My challenge to all of you for next week is this: We all know people in a high risk category. It could be your mother, brother, friend, daughter or spouse. Talk to them about the screening process and encourage them to discuss it with their doctor. A simple discussion could save a life.

Stick a fork in me...

...I'm done!

Today was my final day of radiation. I'm pretty excited to start feeling normal again soon. It may take as long as 2 weeks to get there but at least this marks the end of the damage-causing portion of the treatment. Now I just need my body to repair itself. To celebrate the end of the treatment, Penny and Carly have gone to the movie store to pick out a movie for tonight. I'm sure we'll end up with My Little Ponies or something similar but that's fine.

Got Imodium?

Got Imodium?, originally uploaded by DPC Tutt.

I'm almost done my radiation/chemo double bill. Tomorrow I go in to have my empty chemo bottle disconnected and Tuesday I will have my last radiation treatment. Yahoo! It feels like its been so long living tethered to a bottle and charting my every bowel movement.

My radiation tech Shannon made me this t-shirt. She and all the radiation people have been helpful and encouraging during these past few very challenging weeks. They always have good advice and something new to try if you're unhappy with how things are going. Imodium and Advil turned out to be the two key ingredients for management of the radiation side-effects but I tried a bazillion other things too.

Right now I'm looking forward to the upcoming month or so with no planned treatments. Upcoming non-hospital related events include the James Blunt concert this week and a trip to Victoria in December. Dave and Dave are planning a visit from the island in 2 weeks and my brother Matt is also threatening to come for a visit. It's shaping up to be a very busy month off!

The rest of treatment plan (following this round of chemo and radiation) is up in the air until I meet with my colorectal surgeon a week from tomorrow. At that time I expect to get a surgery date (sometime in mid January?) as well as a rough plan for future treatment/surgery. I will also likely find out I have to go for more tests (CT scans and ultrasound) before my surgery. I hope we also get to discuss the details/plans for the surgery including recovery time, pre-surgery prep (NG tube?, fasting?), pain management and the dreaded stoma (temporary or permanent?). Some of these questions he won't have answers to until closer to the surgery or even after the surgery but I have my list ready!

Thanks again to all of you who have sent food, helped out with the kids, or contributed to the parking at the hospital and the house cleaning during the past few weeks. It has all been very much appreciated and needed.

Look out Bob Dylan

Look out Bob Dylan, originally uploaded by DPC Tutt.

This is hilarious. Neither Penny or I can play the guitar but I have one lying around that I got from my mum. We got it out the other night as a distraction and it was a big hit. Carly loved it. She made up some songs and sung some old classics (think "ABC" and "Old MacDonald"). I was lucky enough to get this clip on the camera.

Carly's Third Birthday

It was Carly's third birthday on the weekend. Penny planned and executed an awesome party with none of my help (see "bad week" post below). She had some awesome help from her mum (food prep, balloons and cleaning), Gill and James (craft planning) and Jim (toy repairs, beer shopping). An honourable mention goes out to James and Rod who moved our deceased fridge out of the basement while they were here.

Carly had a great time, although she seemed overwhelmed by all the people and gifts. Thanks to all for coming and for the generous gifts.
Princess Carly wearing her Crown

The kid committee scrutinizing Carly's latest gift

The chaos of gift opening

It's been a rough week

This week has been the hardest yet. I've been battling with chemo and radiation induced diarrhea and constipation using a colon that has been battered and can't cope with either. I won't go into gory details but I will say that it has been the worst week of my life as far as trips to the bathroom are concerned. In other news, I got an awesome mouthwash prescription from my doctor that seems to have taken care of the mouth sores. But, I have a new symptom this week: Pain in my hands and feet. Its not terrible, it just gets bad when I stand for too long or hold something heavy in my hands. Apparently this is one of the many fun side effects of this particular chemo.

One of the secret weapons of this cancer battle has been a weekly reiki treatment (thanks Vicky!). Its not a medically proven healing technique but it sure makes me feel better and is one of the highlights of my week.

Also this week I attended my first group session for people with G.I. cancer. I was the youngest in the class by half (remember 9/10 colorectal cancer cases occur in people over 50). There were 5 of us at the session (2 no-shows) and it was a great time. We are all in various stages of treatment so it was a good opportunity to trade stories/notes on treatments, surgeries, side effects and remedies. I am looking forward to my next session on Thursday.

Here are some interesting statistics from the week:

• radiation treatments done: 19
• radiation treatments left: 6
• final radiation treatment date: November 18
• prescriptions filled this week: 3
• doctors seen this week: 2
• pounds lost to date: ~15
• pounds lost this week: ~4
• favourite piece of cancer fighting gear: sitz bath (if you really want to know click here)

Q: What do Barak Obama, mouth sores and diarrhea have in common?

A: I'm following all 3 very closely tonight.

At about 8:45 November 4 it looks like CNN is about ready to call Obama the winner. I don't know what that means to us here in Canada but I know I'm happy that it's the end of what feels like the longest campaign EVER.

My side effects from treatment have become markedly worse over the past few days. I have a couple of nagging sores in my mouth that won't go away and the diarrhea has been terrible. The 2 weeks of treatment that I have left will go by slowly I'm sure but now I'm taking it one day at a time.

Penny has been a real trooper over the past few days. For her I'm sure its like having 3 kids at home to look after. I hope she doesn't get too worn out over these next 2 weeks.

Lots of thanks to all of you that have sent food, emails, called or helped out in other ways over the past few months. Its been very much appreciated!

Best T-shirt EVER

Foxtrot Uniform Charlie Kilo CANCER, originally uploaded by DPC Tutt.

Penny ordered this T-shirt for her and an "ichemo" one for me (check out the flickr site for that one). See the 'got cancer?' store link in the sidebar for other great cancer t-shirt ideas. An honourable mention should go to the one that says: "colorectal cancer is a real pain in the ass".

Halloween at the Hospital

Penny the witch, Carly the witch, Andrew the pumpkin and Dr. Chan, originally uploaded by DPC Tutt.

For Halloween we all got dressed up and went to the hospital for my treatment. It was a lot of fun. All the different units had candy out and some people dressed up. Penny and Carly dressed up like witches, Andrew was a pumpkin and I dressed up like my radiation oncologist, Dr. Chan. All the nurses and technicians had a good laugh at the costumes. Dr Chan liked mine although he said I didn't put enough gray in my hair (He has almost white hair and says thats how his kids spot him in a crowd).

Carly got help with my treatment. She got to press the buttons to get my bed into the right position and supervised the treatment from outside the room on closed circuit tv.

On Halloween night Carly and Andrew and I went to about 8 or 10 houses in our neighborhood and then Penny took them to Sandi and Jim's, Uncle Rod's and Tracy's. Overall it was a lot of fun and Carly enjoyed the candy, especially when she got to eat it.

We also got a look at what happens when Carly is on a huge sugar high. Its like someone turned up the volume and ripped off the knob. Luckily it only lasts about 20 minutes or half an hour and then she returns to normal. As a result we've had to strictly limit the amount of candy she can have and the time of day she can have it (not after supper - the best time appears to be about 3 minutes before grandma come to pick her up!).

Hope everyone had a happy halloween!

Carly at (almost) three

In this one she speaks a little more clearly. It doesn't quite have the emphasis on "Uncle Matt" that the previous one does...

About a year ago:

This video was taken about a year ago. My favourite part is when she says "uncle Matt". I'll try and post one of her talking now and you can see the advance in the language. I thought this was hilarious.

Halloween tomorrow/Half way!

Tomorrow is the most exciting non-holiday of them all for kids. Sure turkey is nice at Thanksgiving and Christmas and Labour day is fun in the sun but there is nothing like a massive sugar high while dressed up like Harry Potter to bring meaning to kids lives. This year Carly is going as a witch or a ladybug and Andrew is going as a pumpkin or a bear. Tomorrow when we go to the hospital for trick-or-treatment and a doctors appointment I will dress up like my radiation oncologist (think doctor with white hair and a penchant for nuking tumors). They will have candy and costumes and good times all around. I think we will make a morning of it and stay for lunch too (mmmmm hospital food). I'm feeling more tired as the days pass and am making more trips to the little boys room but hopefully those things won't affect our plans for tomorrow.

Also, today marked my half-way point for this 5 week round of chemo and radiation. Only 12 more radiation treatments to go. Ya-hoo!

Happy trick-or-treating!

An update of sorts/sad news

We just learned this weekend that a friend of the family has been diagnosed with cancer. To that person I would like to say that our thoughts are with you in this difficult time. I found that, following my diagnosis the more doctors I spoke with and the more reading I did, the more at ease I felt. It will never be like it was, but you will develop a new 'normal'. Keep fighting the good fight!

On a happier note, its Halloween this week and everyone seems to be excited. It will be a week of dressing up for Carly the witch as she has to wear her costume to school, music, the hospital on Friday for my radiation treatment (everyone dresses up and lots of the units in the TBCC hand out candy!) and of course she'll go out on Friday night in our neighborhood to rake in the loot. Andrew will be a pumpkin this year and, although he's too young to eat the candy, he will be collecting it for mum and dad to "inspect". I think our neighborhood will be a great place to go trick-or-treating. There are lots of kids and the houses are close together so even the rookie trick-or-treater should be able to rake in a fair amount of candy with minimal work.

Side effects of the chemo and radiation are getting steadily worse but are still totally manageable. I was in at the TBCC today for a double whammy of chemo and radiation. Both departments were running ahead of schedule so I got treated quickly. I didn't even get a chance to work on the puzzles! I should explain that in the chemo waiting room and outside all the radiation treatment areas there are jig-saw puzzles set up in various stages of completion. The idea being that while you're waiting, if you don't feel like reading you can put your brain to work on a puzzle. It turns out that you can also judge the efficiency of the chemo and radiation teams by the turnover in puzzle completion. For example, I often have to wait in chemo (as does almost everyone) so when I sit in the waiting room there is a new puzzle there everyday (because there is always someone waiting that finishes it). But in radiation the same puzzle has been sitting there in almost the same state of half completion for 2 weeks. That goes to show you that my radiation team (Bridget, Shannon, Emanuel, and Kate) are almost always on time.

That's all for now. I'm off to take my parents to catch their "Mr Westjet".

Week 2 complete

I had my ninth radiation therapy treatment today which brings week 2 (of 5) to a close. I'm feeling pretty good although some of the expected side effects have shown up this week. I feel a little more tired at all hours of the day and I have been spending a little more time than I like in the bathroom. As a result, I'm on a special low-fibre diet now. I have to eat only white bread and keep the fruits and vegetables to a minimum. So far its actually quite hard to do.

My Mum and Dad are here now for a short visit from Victoria. They are a great help with cooking, cleaning and the kids which gives Penny and I some much needed relaxation time together sans enfants. Right now they are at the zoo with Carly. I'm sure she's showing them all her favourite things (monkeys, elephants and giraffes) and acting like she owns the place.

Have a great weekend y'all.

Sitting in a chair in the sky

Lately I find myself thinking about how good we have it. Not just me as a singular person or my family in particular, but today's society in general. Friends, family, money, cars, phones, computers, work, health care, pets, life, love we have it all. And now that we have it all we spend our time wishing it was better. Smaller phones, faster computers, more powerful cars. I think it's time we all sit back and thank our lucky stars for all the little things we have that make life good. Nobody makes this point more clearly (or with more humor) than Louis CK did on Conan earlier this week.

Coming this week...

As I start week 2 of this round of chemo and radiation there is a lot going on. This week I have 5 radiation treatments, 2 doctor appointments, 1 chemo treatment, and 1 blood test. Needless to say I will be seeing A LOT of the Foothills Hospital this week. After my blood test today (I had to wait for more than an hour to get my blood taken - mental note - next time make an appointment) my white blood cell count was high enough to continue my chemo treatment, so tomorrow I go in to switch to a full bottle of 5FU.

My side effects are pretty limited so far. I have a terrible taste in my mouth that makes eating a bit of a challenge. Its actually a bit like I'm pregnant. I crave really sweet foods like desserts and hard candy and really salty foods like chips and bacon (mmmm bacon). I crave a turkey-bacon sub from subway almost daily. I've also found that I'm losing my hair. Not much but enough that I notice it in the sink and in the shower and on the pillow. So far my weight is about the same. I may have lost a pound or two but not much.

In my meeting with my medical oncologist today I found out that my last day for both radiation and chemo will be November 18th for sure. That means that I could be ready for surgery as early as December 18th. Also on my 'to-do' list this week is to talk with my colorectal surgeon about booking a surgery date. Likely it won't quite be as easy as one phone call but the sooner the process begins the sooner I can get this tumor out of my arse.

First week of chemotherapy and radiation comes to an end.

Today I had my fourth session of radiation which brings to a close my first week of combined radiation and chemotherapy. I’m told the side effects will get worse as treatment goes on but so far it’s going well. My main side effect from the chemotherapy is a terrible metallic taste in my mouth. It’s like I have a mouth full of pennies. I’m constantly popping lifesavers and hard fruity candy to try and dilute the taste but they never seem to last long enough. The particular type of chemo I’m on (5FU) tends not to have any terrible side effects (bad nausea and hair loss are not expected) but the method that it is administered ensures that any side effects I do have will remain for the entire 5-6 week period of treatment. Years ago 5FU was administered in weekly doses. You would go into the hospital for a half day and get the drug in a drip. This tended to intensify and concentrate the side effects in the first few days after they were administered. This meant you would feel terrible for 2-3 days then ok for 3-4 days and then the cycle would repeat itself. With new technology (port-a-cath and a heat driven Baxter infusion device) the drugs can be administered continuously over the week(s) of treatment, decreasing the cyclicity of the side effects and making for a more stable and predictable quality of life.

So far my radiation treatment is a non-event. I go in, lie on the table for 5 minutes, get zapped and go home. The main side effect of radiation is fatigue but so far I haven’t had any issues with that. There is also a chance of getting some diarrhea given the treatment location but so far so good in that department too. In order to make sure that they administer the radiation to the same spot each day I had to get tattoos so the radiation techs had landmarks to line me up in the same position each day. I was looking forward to maybe getting a skull on one hip and a snake with a lion on the other but the tattoo process was more prison style with a needle, a little blue ink and a single pin prick on each side. All I ended up with is a single dot on each side. Boring.

Colorectal Cancer: What you NEED to know:

I have learned more than I wanted to know about colorectal cancer in the past 6 weeks and wanted to pass on some of what I’ve learned to you in the hope of preventing someone else going through what I’m going through.

• One out of every fourteen males and one out of every sixteen females will be diagnosed with colorectal cancer in their lifetime. That means if 100 of you read this, 6 or 7 of you will develop colorectal cancer at some point in your lifetime.


• For the average person, age is the main risk factor for colorectal cancer, with more than 90 per cent of cases occurring in those over 50.


• Colorectal cancer kills more people in Canada every year than every other type of cancer except lung cancer.


• Almost all cases of colorectal cancer can be cured if detected early by regular screening. If you’re over 50 OR over 40 with a family history of colorectal cancer OR if you are experiencing any of the symptoms listed below, ask your doctor about getting screened. Catching it early can mean the difference between a 10 minute cure and a 10 month (or longer) cure. Colorectal cancer has virtually no symptoms in its early stages, when the disease is most treatable, which is why regular screening is important.

Colorectal cancer symptoms:

• Change in bowel habits - diarrhea or constipation or both, that lasts more than a few days.


• Blood in the stool. (Red new blood from lower down in the colon. Black stools can signify old blood from higher up in the colon)


• Narrower than normal stools consistently.


• Feeling that the bowel does not empty completely.


• Rectal bleeding.


• Persistent abdominal bloating, feelings of fullness, and cramps.


• Unexplained weight loss.


• Constant tiredness and unexplained anemia.

WHY BLOG?

Why blog? There are a few main reasons:
1) To keep friends and family informed of how treatment is going.
2) To spread information about colorectal cancer
3) It's something constructive to do.

Radiation and Chemotherapy: Together at last

This is the radiation accelerometer. It takes about 5 minutes daily to give me the required dose.
This is my port-a-cath. It is basically a central line used to deliver drugs that are too toxic to be administered through the veins in my hands or arms. It hooks up to a small bottle on my waist that holds the chemotherapy drugs. The white cigarette shaped thing taped to my chest is the body heat driven pump that delivers the chemo at 1.5ml/hour.I started a six week stint of combined chemotherapy and radiation on Tuesday. The chemotherapy I'm on now is Fluoracil (also know as 5FU). It gets delivered by a Baxter pump (the white cigarette shaped thing in the picture) which runs off my body heat. It delivers an even dose of 1.5ml/hour for 7 days straight so I have to go once a week to change the bottle. It's not fun having chemo but this setup gives me so much flexibility. I can live my life pretty much as usual. The radiation will be given in 25 daily (Monday-Friday) doses at the Tom Baker centre (Yes, I have to go to the hospital EVERY day!). It is painless and quick to get and the main side effects are fatigue and a sunburn-like reaction in the treatment area (good times!). All of the chemo nurses and radiation techs have been very helpful in providing information and data about the various drugs and treatments. It makes my frequent trips to the hospital (almost!) enjoyable.

I thought it was hemorrhoids...

I was sure wrong about that.

I want to post a bit about my history of symptoms, my initial trip to the hospital and the treatment plan going forward.

So we were out for supper Friday September 5th (the night before our fifth wedding anniversary!) at Scott and Kim's. I was feeling fine the whole night but after we got home and before we went to bed I had several BMs that were purely blood and lots of it. Because its hard to judge the volume I didn't think anything of the first one, but by the time I had had three in the space of three hours I was getting worried. I told Penny and she suggested I phone the health link to get their opinion and suggestions for a course of action (it being Friday night, I wanted to avoid the ER if at all possible as wait times are particularly bad then). The health link nurse asked me a bunch of questions but it all came down to how much blood did think I passed? Less than half a cup, or more than half a cup? I had no idea but figured it could be more than half a cup. So, off to the hospital I went. I got to the triage desk at exactly midnight and checked in. They told me it was busy and it would be "a few hours" before I would be seen. So I settled in with my book and blackberry with all the other Friday night invalids. I finally got to see a doctor at about 5 am but was stuck in a room with 6 or 7 other people. We were all seated in chairs with one bed that we shared when the doctors came for exams. At this point I began to measure the volume of blood I was passing. While I was in the ER I passed about 1.3 LITRES (!) of blood. We guessed that my total blood loss for the night could have been 2 litres or more!

Once I saw the doctor he deduced that I didn't have any obvious hemorrhoids and I should probably have a sigmoidoscopy to investigate further. So on Saturday afternoon I was moved up in to the internal medicine ward and was sent for the sigmoidoscopy. A sigmoidoscopy differs from a colonoscopy in that it only investigates the lower portion of the large bowel and does not involve a full 'cleanse', whereas a colonoscopy investigates the entire large bowel and requires a full GI cleans. The doctor who performed the test was my age and seemed to enjoy his work (!?). But alas there was too much blood for him to see anything clearly so he suggested I come back tomorrow (Sunday) for a full colonoscopy. So away I went back to my ward for my second night in the hospital. Once I got back to my room I was met by a Nurse who told me I was "NPO" which is some Latin acronym for "don't eat or drink anything until after you've had 5 feet of fiber optic camera cable crammed up your arse". So, my last meal was Friday night. It was now Saturday afternoon and I hadn't had anything to eat or drink all day. My colonoscopy was scheduled for Sunday afternoon so I was looking at about 48 hours plus of not eating or drinking a single thing. Oh that doesn't include the FOUR LITRES of peach flavoured salty water I had to drink to clean out my system. Good times. I managed to drink my entire 4 litres in the required 4 hours and retired to my bed in an attempt to sleep.

Sunday morning I hung out not eating or drinking and thinking that this trip to the hospital was a lot more invasive and time consuming than what I was expecting. Little did I know it would get worse. Before my colonoscopy Sunday afternoon I met with the doctor (another young guy) in the hallway to discuss the procedure. He was in a great mood (I'd like to see what kind of mood those guys are in when the roles are reversed!) and proceeded to explain that in a guy my age they were not really looking for or expecting to find anything nasty (like cancer). He said the most likely cause of the bleed was from undiagnosed Crohns disease, ulcerative colitis, or perhaps just a burst blood vessel that wouldn't stop bleeding. So we headed into the room to do the test. I was chatting about my kids with the nurse and asking about her family (she had 2 grand kids almost the same age as Carly and Andrew). We joked around and then she loaded me up with happy juice and sat back to enjoy the show. As soon as they got under way, the mood in the room changed. I was drugged and couldn't hear what they were saying but I could tell something was wrong. As soon as I was out in the hall after the test, the doctor came out to talk about what he found. He apologized profusely for leading me down the wrong path and explained that they found something that looked like cancer but they wouldn't know for sure what it was until the biopsy came back in 2 days. He was very professional and apologetic so I was still in high spirits until the nurse I had been talking with came out to say goodbye. I could tell she was shaken by my diagnosis and by the time we parted ways we both had tears running down our cheeks.

That was when I knew I had something really bad.

The wait for the biopsy results seemed to take forever but in the mean time there was no shortage of tests to do, doctors and nurses to talk to and halls to walk with my noisy IV pole. On Monday I went for an abdominal CT, a chest CT, and a chest X-ray. On the abdominal CT they could see what they thought was a tumor in the colon, as well as 2 spots in the liver that were likely metastases (cancer that had spread to the liver from the colon). The other tests confirmed no sign of cancer in the lungs, lymph nodes, prostate or anywhere else. I figured that was good.

On Monday afternoon as I was still waiting on biopsy results, I had an alarming experience. A young female oriental doctor with a poor command of English came to my bed. With the flurry of activity in my room (I was sharing with 4 other people) and the language barrier, I missed part of the introductions. She proceeded to tell me that my biopsy results were back. She said they were not conclusive but it looked like I had an adenocarcinoma in my esophagus and I would have to have another esophageal biopsy done to confirm the first pathology report. I was initially scared shitless. So this is how you find out you have cancer? A doctor just walks in and pukes out your diagnosis in broken English? No way! Then I told her that I had never had a biopsy taken from my esophagus and she looked confused. Then she looked at her chart, said that she must have the wrong patient, and vowed to look into my plight. Then she turned around and gave the same speech to the guy across the room whose biopsy results they were. Funny thing is he was 70 and I'm 31. All she would have to do is look at the age in the chart and she would have known she was talking to the wrong person.

In the end she came back and told me that my biopsy results were in fact not yet in and that she was very sorry for the miscommunication. She was very polite about the whole thing BUT when you're giving a diagnosis like that maybe double check that you're giving it to the right person.

On Monday evening Penny was there when the doctors came by to give me the results of my biopsy. It was an emotional experience to hear the words "unfortunately it IS cancer". But they were very professional and helpful in explaining the likely course of treatment and the team of doctors that would provide it. We convinced the nurses to let Penny stay with me in the hospital all that night. Unfortunately, as the most stable and youngest patient in the ward I had been moved to what used to be the patient lounge. There were only 2 patients in the room but it was right outside the nurses break room so all night there were people going in and out. Needless to say Penny and I didn't sleep a wink that night.

The remainder of the week in hospital (Tuesday to the following Monday) was spent learning about cancer, undergoing more tests (Rectal Ultrasound is NOT a Pink Floyd album), having a port-a-cath installed in my chest and meeting with doctors. From my admission on Saturday morning to my discharge on Monday I had 7 different teams of doctors: An ER doctor, an internal medicine doctor, a gastro-intestinal doctor, a colorectal surgeon, a hepatobilliary (liver) surgeon, a medical oncologist (chemo doctor), and a radiation oncologist. I say teams of doctors because that's exactly what they are. Each attending doctor has fellows, senior residents, junior residents, and students that work underneath them. So when you meet with, say the internal medicine doctor, you could be meeting with the attending physician or you could be meeting with a student. It makes communication difficult. It made me wonder how anything ever got done. Oh and if you think you can page a doctor and they'll call you back you're wrong. The pager is purely a device that beeps in order to signal the end of a clinical visit.

So, after 10 days in the hospital, a crash course in Medical school here's what else I learned:

• I have stage 4, grade 2 colon cancer (Adenocarcinoma)
• Stage 4 means it has spread from it's place of origin
• Grade 2 means it is moderately differentiated (1 is slow, 3 is fast)
• The main colon tumor is 8cm from the back door
• Both the colon tumor and the spots in the liver are totally operable (good news!)
• I will have to undergo more than half a year of chemotherapy, a cycle of radiation, and at least 2 major surgeries in the quest for a cure
• This all could have been prevented by early screening (they usually don't even think about screening for colon cancer until age 40 with family history, which I have).

Tutt Ladies

Penny and Carly in black and white, originally uploaded by DPC Tutt.

Just a test to see how posting from Flickr works. I'm not sure how to edit fonts and such be we'll see if it works...

Test post for my new blog

I have created a blog for spreading the word about my fight with colorectal cancer. So far its been a roller coaster. I start my second round of chemo tomorrow. Good times. I will post some more when I have some time and my setup is complete.