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.