Back on the chemo

I started my 7th round of chemo on Tuesday. We added in the drug Bevaciszumab (Avastin) for this round. I'll probably get it for the next 5 rounds as well. As I've mentioned before on the blog, this drug works by stopping the growth of new blood vessels. Since tumors are constantly growing new blood vessels this drug effectively stops the tumors from growing. There has been tremendous success with this drug so far but it's only available (ie covered by Health Care) for colon cancer patients, so I consider myself very lucky. Only a few months ago it was not covered for use on any cancers and if you wanted it you had to pay thousands per dose to get it. There are some patients at the Tom Baker centre that have other cancers (not colon) that pay for the drug out of their own pocket. One guy with a brain tumor was given six months to live, elected to pay for the Avastin out of his own pocket and is still alive today, 3 years later. I hope I have the same type of success.

I'm feeling pretty crappy now but I know it will only last a few more days. I slept most of the day today so that's good. We have friends the Louis Family from Lumby (Vernon) here visiting now. I think we will take them out to Mallzac tomorrow to see the big Bass Pro Shop and get out of the house. Good times.

Congratulations to Dave and Katy on their engagement! Can't wait for the wedding. Will it be on a boat?

Passing on

The world lost a great woman this week. My granny (Janet - my mum's mum in New Zealand) passed away peacefully on December 29th. She died during her evening snooze with her husband Hugh at her side holding her hand. She was 92.

Jan's eyesight had diminished over that past decade making it hard to for her to sew or knit (her favourite pass-times of late). Over the past year things got steadily worse: She suffered a series of mini strokes that took away her ability to speak which drastically decreased her quality of life. It was her time to go and I'm glad it was peaceful.

Our thoughts are with Hugh and their kids Andrew, Jeremy, Tim and Nicky as they prepare for the funeral on January 6th.

The obituary from the NZ Herald:

Janet Henderson (nee Steele) . On December 29, 2009, at Rangiora, aged 92 years, dearly beloved wife of Hugh, loved mother of Tim, Jeremy, Nicky, and Andrew, loved motherinlaw of Carol, Amanda, Bruce, and Julia, loved and missed by her ten grandchildren and six greatgrandchildren. Messages to the family may be addressed to c/- Holmwood, 114 King Street, Rangiora. A Celebration of Jan's Life will be held at our Westpark Chapel, 467 Wairakei Road, Christchurch, on Wednesday, January 6, at 2.00pm;

Thank you just doesn't seem to be enough

This will be my second Christmas as a cancer survivor. The year has been filled with ups and downs but I have to say that overall it's been a great year. Having the chance to spend an entire year at home with my family has been a treat. Watching the kids grow up on a daily basis is an experience that not many fathers get to have these days. Although I was sick or recovering from surgery for part of the year, I have to say that my memories are mostly positive.

Over the past year I have gleaned a load of positive energy from my family but I have definitely enjoyed more than my fair share of support from friends, acquaintances and even people I've never met. Friends sent food, arranged for a maid service and even sent $ to help out with extraneous medical costs and bills. People from all over Canada and the world have sent emails, commented on the blog, sent $, gift cards and encouraging notes. Family has been generous with their time and money. Other cancer survivors have heard about my struggle and have cheered me along. In short, this battle with cancer has given me the opportunity to realize how much people care about my life, my family and my battle.

So what can I say to all those who have been there for me over the past 16 months? Somehow "thanks" just doesn't seem to cut it, but it is indeed a heartfelt "thanks". I have one other thing to say: If you're over 50, have a family history of colon cancer or are experiencing symptoms, ask your doctor about being screened for colon cancer. As I've said before, it could save your life.

Our deepest thanks to all,

Dan, Penny, Carly and Andrew

Poker and Victoria

I just got schooled by my mother-in-law at texas hold'em. She's a crafty one.

We're headed to Victoria tomorrow evening. Can't wait for all the packing/cleaning to be done. It could be a long night...

Happy holidays

I don't have much to report today but I figured a short post couldn't hurt. I'm feeling much better now that I'm through the worst days of my 6th treatment. 6 down and 6 more to go starting December 29th. I opted to take an extra week off between sessions so that I can feel good for our trip to Victoria for Christmas. This week will be spent doing the rest of our Christmas shopping, packing, and just generally enjoying the good days. The weather is supposed to get better so some much needed playtime outside will be in order as well. Oh yeah, and a drain service/replacement will happen Thrursday, just for fun. That's all for now...

Friday

Feeling the worst of my bad-taste-in-the-mouth side effects today. Been sleeping a lot too which is one way to get past the bad times. By tomorrow night I'll hopefully be through the worst of this round which means I'm half way through my six months of chemo. I've been neglecting my emails of late so please don't be offended if I haven't replied to you. I'll get there, I promise.

What’s the difference between a car and a golf ball? Tiger can drive a ball 400 yards.

No surgery, more chemo - updated

Updated: At my chemo appointment yesterday Dr Lupickuck (chemo doc) stopped by to see how things were going. We had a good discussion about the options and I'm pretty happy about the way things are going. Carrying on with a full 6 month course of chemo will hopefully wipe out any existing microscopic disease floating around my body looking for a place to happen. Knowing now that the lung nodules are unlikely to spread it means that surgery can happen months or years down the road once (or if) they grow to a size that Dr. Gelfand can feel with his hand. In my discussion with Dr. Lupichuck we also decided to add the chemo drug Bevacizumab which acts to slow the growth of new blood vessels. Since in most metastatic cancers blood vessels grow quickly, using this drug can slow (but not stop, alas) the growth of existing tumors. I think its a good move. It doesn't have any minor side effects, only major ones like the possibility of a pulmonary embolism or deep vein thrombosis. Good times. It feels good knowing that if I'm hurting, the cancer must be hurting even worse. It also feels good to be doing something about it. Sitting around in denial or just waiting things out is not fun. You can't sit in bed with your eyes closed if the house is on fire and just hope it goes away, you gotta save what you can and run.

It turns out Dr Gelfand isn't confident in the ability of interventional radiology to accurately place coils in my lung at the site of the tumors. That means 3 more months of chemo then monitoring my CEA levels (a tumor marker in my blood) and CT scans every 3 months knowing the tumors in my lung will probably grow back. Its not ideal to say the least. Lupichuck had a bit of good news though. She said that the cancer is highly unlikely to spread from the tumors in my lung. Any new spots that show up will likely be due to spread of microscopic disease from the primary tumor.

I can't say I'm looking forward to doing more chemo tomorrow. It sucks. Big time.

Good news

I just got back from my meeting with Dr. Gelfand. It went as well as possible. He said there was no evidence of new tumors on the CT scan from Monday (yahoo!) and that the existing spots in my lung had shrunk. In fact he said they may be too small to feel during surgery. It's a bit of a conundrum. If you do chemo you shrink the tumors to the point they are so small that surgery may not be possible but a cure is not usually possible without removing all the visible tumors. So here we sit. In the end we decided to go for the surgery but it depends on interventional radiology being able to place a needle in the tumors before surgery (that doesn't sound fun). So Dr Gelfand will talk to the interventional radiology team and make sure they can do it, then he will book my surgery for sometime in January. He also said that with Alberta making cuts left right and centre to health care because of running 1.3 billion dollar deficit, the scheduling of surgery may be delayed a bit. He was still confident that a January date was feasible. Another thing he said was that he didn't really want me to do any more chemo for fear that we may shrink the tumors further making them even harder for him to feel and remove. I can't say I'm sad about that. So we left the meeting feeling pretty good. We will wait for his phone call on Monday to tell us a) if the interventional radiologists think this thing is possible and b) if I have to do chemo on Tuesday. Obviously I'm hoping for a) hell ya and b) no chemo. Tutt out.

Grey Cup Sunday

I just watched the Allouettes win the Grey Cup with a last second field goal. Saskatchewan was definitely the better team on the day but the better team doesn't always win. It reminded me of the 1994 Grey Cup that I went to in Vancouver where BC was playing Baltimore. The game was tied with no time left and Vancouver had possession. Lou Passaglia, the kicker for BC, managed to knock in a 55 yard field goal to win the game. It is probably the best and most exciting live sports play I've ever seen.

This past round of chemo went well. It seemed to be better than any of the other rounds so far. I was actually able to function somewhat normally most of the time, although there was the usual amount of nausea, fatigue and terrible mouth taste. I'm not sure what the difference was. Maybe the Juice Plus? Tomorrow will see me up at the crack of dawn to go for my CT scan. Some people get nervous about this sort of thing but it doesn't bother me really. It's so out of my control that I just have to acknowledge that I'm along for the ride. The interesting meeting will come Wednesday when I meet with my thoracic guy (Gelfand) to discuss the results. Can't wait for that. Only one more round of chemo before Christmas! Yahoo!

Wednesday Action

I got my latest treatment yesterday without incident. My blood counts were the best ever (perhaps thanks to the juiceplus I've been taking? - more info on juice plus coming soon) and I was feeling great yesterday before we went in to the hospital.

Yesterday morning we went to see Santa at the mall. Carly was ecstatic to see him. Andrew was a little less enthusiastic. He cried for the first minute or two but he became much more manageable after he realized he might get a candy cane out of the deal.

On the cancer front, I have a CT scan booked for Monday the 30th and an appointment with my thoracic surgeon on Wednesday the 2nd (I just made that appointment yesterday - getting an appointment that fast is unheard of; I'm not sure how I got so lucky). The CT scan is to make sure there has been no more spread in my lungs. If things look good I think I'll be having surgery in the new year to remove the spots in my lungs. As I said before, due to the small size of the spots (they range form 2-7mm), he may have to do a procedure in the interim to mark their exact position in my lungs using CT guidance. I'm sure I'll find out all about that when I see my thoracic guy in a week.

This past weekend Penny took the kids to Radium hot springs with our friend Vicky. They had a great time swimming and watching movies and just generally enjoying a change of scenery. Their trip coincided perfectly with the arrival of three of my friends from University (Dave, Dave and Kris) who came out to spend a weekend with me. We had a fantastic time. There were a few trips to the bar, a night out to see Dane Cook (a comedian), some poker and a mysterious charge on my credit card from the "FM cafe". I'm not sure what that's all about. It was a super weekend and my thanks goes out to those guys for spending their hard earned cash to come and see a friend.

Thanks to Janelle Miller for sending me a copy of her recording of Smile. It's very uplifting.

Congratulations to Geoff and Pam on the birth of their son Jude.

Our thoughts continue to be with my Uncle Tim and his family.

There's a little profanity in the following Dane Cook clip but it's funny.

Round 5

Just leaving for the Tom Baker to start my fifth round of FolFox. I am not looking forward to this week but its gotta be done. We all had a great weekend. I will update you on that when I have more time.

A night out

Penny and I got out to see Matt Good on Wednesday. He's one of my favourite artists and he has a great blog. His blog mostly focuses on American foreign policy with occasional person entries and stuff about his music. It's very well written and updated nearly daily (unlike this blog!). Bailey came to babysit while we were out and did an amazing job with the kids. It was a good night out together and I hope to do it again soon.

In other news it was my brother Matt's birthday on Sunday. He turned a whopping 31. It seems like just yesterday we were playing together in the back yard. How time flies. Also, my grandparents in New Zealand (Granny and Papa) just had their 70th wedding anniversary. Congratulations to them!

Penny and the kids are spending the weekend in Radium hot springs with our friend Vicky. The timing of them leaving works out well as I have three friends coming out to visit for the weekend from BC. Dave and Dave and Kris and I all went to UVic together. We are heading to Dane Cook on Saturday night (a comedian - he's playing the dome) but besides that I'm not sure what we'll get up to. No good I imagine.

Happy Friday everyone.

Fighting Back

Hello everyone. I'm feeling much better today. Yesterday was the TSN turning point. I got up feeling good and managed to get a few chores done around the house. Penny can always tell when I'm feeling better because I start to help with the dishes, kids baths, reading stories etc. Today I'm going to tackle a small project here (we're putting a door on our master bath - who builds a bathroom without a door?). I've got Penny's brother James coming to help. He's a pro so hopefully he can teach me how its done.

For now our thoughts now are with my uncle Tim and his family in Victoria. He's recovering from brain surgery and is getting going on some serious physical therapy. Keep at 'er Tim.

Also, thanks to those of you who have left comments or sent emails. We are moved daily by the support and kind words. Thank you all.

My Hero

Well, we all have our bad days. It's been particularly blue in our house the last few days. Not sure why exactly, just is. Dan has always been one of the most strong minded people I've ever known. Nothing ever really got to him. I can get so agitated and steaming mad at so many things, and it's like water off a ducks back for him. I think that's why this is so hard for him. Chemo has so many side effects, and every day we learn about more. I don't know how to coach someone off the bottom that would just never be there if it weren't for cancer. I've been on the bottom in my life, and I have developed many tools to pull myself up again. My 'tools' don't work for someone like Dan. Days like today I long to be normal. I wish for this all to go away.

Okay, we're good, lesson learned... can we have our life back?

Most days Dan and I just plug away at what we need to do to save his life. Surgeries, Chemo, Dr visits, phone calls, drugs, all of it. We just do it. But every now and then, it's like we both stop and see the massive hill we're climbing that seems to grow with every turn. It just gets you down sometimes. These are the hard times. It's not often that we're both struck at the same time. Usually one can pull the other.

I know that at the top of this hill will be the most amazing view, well worth the climb. I'm just tired of climbing today.

It's funny what a metaphor nature can be. In searching the Internet for a picture to add to this post, I was lifted. Many beautiful sunrises captured out there.

Wishing away the days

Today I feel like hammered shite. I find on these days of feeling like crap I wish the time away. I wish for normal, I wish for comfortable, I wish for fun. I can't wait for next week when I know I will be feeling somewhat better. I wish away the hours of nausea and fatigue and the feeling of acid ass swamp water metal giraffe feces in my mouth. It's all understandable, the need to wish it all away, but I sure feel guilty. This cancer could kill me sooner rather than later and I spend my time wishing away the few days I could have left. How crappy is that? I try to make the best of these days (walking, reading, watching Bourne movies) but it never lasts. The feelings of wanting to get high and wake up next week feeling good, return over and over again. I wouldn't wish this on my worst enemy. Fuck Cancer.

The power of the wind

The power of the wind, originally uploaded by DPC Tutt.

We woke up this morning to a funny sight out out kitchen window. This trampoline had blown out of someone's backyard and across the baseball field only to become entangled in the backstop. At first I thought it was a prank but then I realized it must have been the fierce chinook winds that blew through last night. It's quite a funny sight.

Things are good here. I'm feeling back to normal after my latest round and looking forward to a busy birthday weekend for Carly. My parents are coming for the party and it's looking to be a good time (we have a few surprises up our sleeve).

Happy 60th Uncle David!

Around Alone

Looking for something interesting to follow that doesn't deal with celebrity adoption, H1N1, the ability of our Prime Minister to play the piano or David Letterman's infidelities? Try this: Jessica Watson is a 16 year old Australian girl trying to become the youngest person ever to sail around the world non-stop unassisted. She left Queensland October 18th in an attempt to fulfill her dream. You can follow her through her blog or her website. Check it out.

Getting my chemo - Round 3

Getting my chemo - Round 3, originally uploaded by DPC Tutt.

Things are going well so far this round. I have managed to go without taking any of the anti-nausea steroid besides what I took at the hospital before my chemo hook up. I made it out of the house today on two occasions; one to see Carly's dance class (parents were invited to watch today) and two, to watch the kids play hockey with the neighbors outside. It feels really good to be able to get out and walk around. I still feel pretty crappy though. The taste, the fatigue, the nausea, the numb hands and feet and the inability to drink cold liquids are all still there. Penny has been waiting on me and is quite the soldier, looking after the kids 24/7, cooking, shopping and chauffeuring are all in a days work for her. She makes a killer coffee too!

That's all for now I guess. Just wanted to let you all know I'm hanging in.

Abstract Face Painting

Charlie had Carly over to play this afternoon while Andrew was asleep. I guess they went downstairs and got into the face paints. When they came upstairs Leah was quite surprised. I think it was very artistic of them, especially since none of the paint ended up on the walls. Pictures by Leah/Kent.

Lemons

This is hilarious. Andrew's first experiment with lemons. Carly is in this video too but she actually loves lemons and her reaction is somewhat embelished. Enjoy.

This week's update

UPDATE: After reading this post through today I realized I didn't accurately portray the entire story of Penny's new glasses. In actual fact they were much cheaper than the figure I originally mentioned below. As for their selection, I was the one that actually picked them out and made Penny get them (she was quite uncomfortable with the price). I assured her that it's important to get your first glasses from a store where you can return them if they don't work out or if there are adjustments to be made to the frames or lenses. Subsequent pairs of glasses for Penny will come from clearlycontacts.ca I'm sure.

Sorry for the delay in getting the updates out there. I haven't been feeling like sitting in front of the computer much lately.

This round of chemo went marginally better than the first one. I took WAY less of the steroid anti-nausea drug Zofran and it improved my mood, mental health, rash and didn't make me feel any more nauseous than when I was taking it. I still felt like crap in a cup but having a clear mind helped me get through the physical annoyances that chemo causes. My next round will start Tuesday as long as I make the hurdles on my neutrophils, platelets and hemoglobin on Monday. I can't say I'm looking forward to it but after this next round I will be 1/4 of the way through this treatment program.

One of the weirdest symptoms of this chemo is the numbness that you get in your hands, mouth and throat when you either hold something cold, breathe cold air or ingest something icy. The hand thing is just annoying but the throat thing is quite scary. I forgot a few times to only drink warm fluids and on a couple of occasions have given myself a good scare. If feels like you're choking and you can't breathe. It passes quickly but for a few seconds it feels like the beginning of the end. Holding cold objects is interesting too. Retrieving a full gallon of milk from the fridge downstairs can be a challenging task. Carly must think I'm crazy wearing gloves to carry cold things around.

In other news, Andrew staged a coup this week. He hasn't been fond of his high chair for some time now but on Monday he wouldn't get in it at all and refused to wear a bib. From that time hence he has been sitting at the table in a big person chair just like the rest of us. There have been a few messes, I won't lie, but most of the time he does a pretty good job of getting the food from his plate into his mouth without making too big a mess. The lack of physical restraints does result in a little bit of eating while walking but he's learned quickly that the food gets taken away if he leaves the table.

The other thing Andrew has learned to do lately is to relocate movable objects (like chairs, stools, empty boxes) to strategic locations throughout the house, where with Navy-Seal-like speed and cunning he uses said object to obtains contraband. This contraband is often electronic in nature. His favourite things are phones, PDAs and ipods but if he finds knives, scissors, pens (especially markers) or liquids of any kind he will settle for those. It has limited our list of Andrew proof hiding spots on the main floor to the liquor cabinet above the fridge. Most of the time we even have to keep our phones and ipods on the fridge. It's most annoying to walk into the kitchen after the briefest of absences to find Andrew standing upright on the counter riffling through a cupboard full of decidedly unsafe implements. He hasn't found the switches for the fireplace or garborator yet but its only a matter of time.

Carly and Penny went to the optometrist today. It was Carly's first checkup. Things went well for her and she caused quite a bit of laughter in the office. Whenever she couldn't read a letter on the wall she said "something". As in "What are the letters in the first line Carly?" her reply would be "A, E, uh something, F". She did it the entire way through the exam. It was pretty funny. Penny got glasses for the first time in her life. Her prescription isn't that bad but hopefully she will be able to take some of the strain off her eyes. I wonder what she'll think of me the first time she sees me with her new glasses? Hmmm. I'll let you know. The glasses that fit her best cost ~$600. Having had glasses myself since grade 8 I was stunned at the price, especially having just ordered new glasses myself online for only $95 including lenses and shipping. After we got home we had a little buyers remorse and called to see if we could cancel the order but they had already started to work on the lenses. So we're stuck with them now but if you or anyone you know needs glasses or contacts be sure to check out ClearlyContacts.ca. They sell glasses online from $38 (including lenses!) and contacts at about half the price you would pay at an optometrist.

I promise to try and update more frequently. Have a great weekend all.

Never Underestimate the Power of a Detemined Wife

In University our friends used to joke that when there was a tough discussion to have or a disagreement with a prof or anyone, it would be nice to have a "Pocket Penny" to pull out and take over the tough conversation for you. Penny was always passionate and relentless when she believed in something. It's one of her many great attributes. So when I told her that I was booked in for chemo on Thursday instead of Tuesday she got on the horn with the Tom Baker day care chemo people and started politely inquiring about why I had been bumped to Thursday. In the course of her discussions she got offered times on Wednesday but held her ground and said that today was really the only time it would work. As a result we got a call half an hour ago from my chemo nurse saying that they would be ready for me at 3:15 today. As we've learned time and time again in this process it pays to be the polite squeaky wheel.

So Sandi is here to look after the kids and Penny and I are off to the hospital in the snow to watch a movie and get juiced up with round two of chemo. Good times...

Turkey Time!

I'm pretty excited about this weekend's turkey feasts. We managed to score two turkey dinners this weekend, one with Nancy and Art next door and one with Penny's family. It's going to be AWESOME!

I met with my oncologist Dr Lupichuck yesterday to discuss the goings on of my first round of chemo. It went pretty well all things considered but I had a few concerns. I got a nasty rash on my neck, chest and shoulders, was a bit depressed and had heard that sometimes this type of chemo can cause seizures! It turns out that all three problems are likely caused by the anti-nausea steroid I take for the first three days of chemo. It helps with the nausea but along with that one benefit, there are several unwanted side-effects. Her suggestion was to cut down on the steroid by half for the next round and see if things improve. I hope she's right and that helps out with some of my problems but hopefully not at the expense of vomiting my guts out.

Because of the long weekend there was trouble booking all the chemo patients in for Tuesday treatment. As a result I likely won't begin my next round of chemo until next Thursday. It's really too bad since I am feeling good and ready to get on with it. I asked her to book all my future chemo appointments right away so that this doesn't happen again. So as a result I am booked for all my treatments up until Christmas, including doctor visits and one chest-abdomen-pelvis CT scan on November 30th. It feels good to have that all sorted out but I still need to book an appointment with Dr Gelfand (thoracic guy) and figure out if I need to have a head CT and another PET scan before surgery as well. Hopefully the doctors can talk amongst themselves and figure it out.

I need to rest up for the feast tonight. Happy turkey time all!

Bet you didn't know this:

I forgot to mention one thing we learned in Vegas about colon cancer. After we saw the bodies exhibit at the Luxor, they had a gift shop where you could buy little souvenir accouterments, t-shirts and books. One of the things they were offering for sale was a textbook on different diseases. It was a one stop shop for all you ever wanted to know about things you never want to get. One of the diseases covered in the book was colon cancer. After reading a little through the one page summary I discovered an interesting fact: Colon cancer tends to occur at one end or the other of the colon, generally not in the middle. It occurs either at the start of the ascending colon or at the end of the descending colon (rectum). The place where cancer occurs in the colon is roughly correlatable to sex. Women tend to get colon cancer at the beginning of the colon while men tend to get it at the end. Who would have know?

Out from the fog

I'm finally out from the fog of my first round of chemo. The whole body experience that is chemo a hard thing to describe. So I won't. I'll just say that it sucks. Besides all of the physical side effects, there is an overwhelming depression that sets in for a few days after getting dosed up. I think it comes from not having the desire to do anything except lay in bed. For me that's the hardest thing to deal with. At least I have a week or so of feeling good before I have to repeat the whole thing again. And again.

I would like to take this opportunity to thank Astrid for her generosity in setting up a Norwex fundraiser for my family. It was a tremendous success and a really fun night. The proceeds will be used as needed for future medical related expenses. Thanks to all of you who came out and participated. If you didn't get in on the initial party and would like some Norwex stuff, feel free to contact Astrid (NorwexAstrid@telus.net).

An Observers Point of View

There seems to be a lot of hits on the blog lately. I'm sure everyone is wondering how Dan has been doing with the chemo. I thought I could share a few words. Dan's much better at this than me and should this blog ever become a book deal we'll be sure to leave my posts out of it.

Dan's been doing remarkably well. This session so far has been a lot better than I remember last September. While at the Tom Baker day care unit Dan and I watched "Wedding Crashers". Hard not to laugh at that movie. The whole process took about 3.5 hours. Dan leaves with his famous baby bottle of 5fu which slowly runs in over 46 hours. For nausea Dan takes 2 different drugs, and one is a steroid. I swear it was this drug which had him vacuuming off the atrium and cleaning light bulbs on Wednesday. He'd also been for a walk and this was all before noon! The drugs seems to be doing their job, Dan's only had a few moments of nausea and usually in the morning before he has a chance to take his meds.

Thursday morning we headed back to the Day Care Unit for a disconnect. The protocol there is for the first time you watch the nurse do the disconnect. The following time you go back and perform the disconnect in front of the nurse. By the third time you can stay at home and disconnect yourself (saves a trip to the hospital). I managed to convince the nurse not make me watch this week but rather perform the disconnect myself. She was great about it.

Dan's been tired and has the terrible taste in his mouth (imagine a handful of pennies in your mouth at all times) but he manages well, taking naps and eating frequently just for a taste change. He even took in the Hockey game last night. Sorry to say his favorite Canucks got some heat from the Flames!! Kevin and Dan each sporting a Canucks jersey. Of course they were heckled. GO Flames GO!!! (Hey it's not my blog but it's my post).

The treatment may be peaking today. Shortly after waking up and having Reiki he fell asleep on the couch. He's been there all afternoon despite the kids running through the room several times and lunch occurring right under his nose. I'm shocked he wasn't startled awake several times, but he's obviously in a deep sleep. Reiki is always good for that.

The outlook for the weekend looks much like everyone elses I bet. Hibernating from the white stuff that's suppose to fly and maybe some good naps and movies.

All systems go for chemo.

I met with Dr Buie (colon dude) and Dr Lupichuck (chemo chick) yesterday. We discussed options surrounding the drain with Buie and ended up deciding to leave the drain in for this course of chemo. If I got infected, which could happen while I'm immunosuppressed on chemo, they would just have to put it back in again which is one of the most painful things I've ever had done. So I suggested we just leave it in.

Dr Lupichuck was a little apprehensive about starting chemo on me with the drain in. She was worried about the increased possibility of infection. We ended up agreeing to have weekly blood tests to closely monitor my WBC count and lymphocytes, factors which, if deviated significantly from normal could provide an early indication of infection. After the plans were made I got the go ahead to start my folfox chemo today.

Penny and I went in and spent about three hours in the Tom Baker cancer today getting me hooked up to my chemo. I got the drip for 2.5 hours and then got to take a bottle home for 2 days. I have to go back to get disconnected on Thursday but eventually Penny will be able to do that for me. So far things are going well. I'm sensitive to cold and hot on my hands and in my throat, I have a terrible taste in my mouth and am tired already. The cycle I'm on will last two weeks and I have 6 cycles to do now before more imaging is done. My project in the coming weeks will be to line up doctor appointments and scan dates for after this three month period. My goal is to lose as little time as possible between the end of this 3 month period of chemo and whatever comes next (either chemo or surgery?).

What I Learned on my First Trip to Vegas

1) There is a lot more to do in Vegas than just gambling.

2) At any given store or bar, a bottle of water and a bottle of beer generally cost about the same. Sometimes the beer is less expensive than water.

3) You can drink just about anywhere in Vegas. This is particularly handy when your wife takes you (read 'drags you') shopping.

4) Drinking and shopping stops being fun when there are so many bags to carry you can't hold your beer.

5) Never underestimate the impact the words 'outlet mall' can have on your wife's usually sane disposition.

6) A Coach bag is a purse. Not a bag for carrying hockey equipment to practice.

7) Everything in Vegas is bigger than in 'real life' from hotels to drinks to shows to restaurant bills. They are currently building a new hotel in Vegas called the City Centre Hotel. It will have about 3600 hotel rooms in multiple high rise style buildings situated on a 60+ acre property in heart of the strip. That's huge.

8) If you go to Vegas bring comfy footwear. Things there appear closer than they actually are.

9) Anything goes in Vegas. At any given time of day you will see people dressed in bathing suits and ball gowns and everything in between.

PET results

We're just finishing packing for Vegas and getting ready to head to the hospital for my glue treatment this afternoon but I wanted to make a quick post about the PET scan results and meeting my thoracic surgeon.

The PET results showed three (possibly four) lesions in my lung. It also showed that there was no cancer anywhere else (good news!). Dr Gelfand (sounds a bit like a character form Lord of the Rings doesn't it?), my thoracic guy spent an hour with us yesterday reviewing the scans and talking about options. Although he wasn't able to cast a 'destroyouscancerous' spell, he did say that I am a candidate for surgery and he should be able to remove the lesions (surgically, not magically) without taking very much lung along with them. The lesions range in size from 2mm to 7mm. The surgery would involve making an incision under my right arm and part way across my back, spreading the ribs and removing the lesions by feel (no scopes or remote surgery or whatever its called - he wants to get his hands right in there so he can feel the evil stuff). He said it was my choice as to what order we do things (chemo first or surgery first) but after he conferred with Dr Lupichuck he said it might be more beneficial to do the chemo first. Penny and I both felt very good about the meeting and the options that are on the table.

So, I have more glue today, see Lupichuck Monday, maybe start chemo Tuesday and see Buie Wednesday. I may be able to delay my chemo until Wednesday after I have talked with Dr Buie and had his input on the drain situation. Until then its off to Vegas for a few nights of fun in the (hot) sun.

We're off to...

Vegas baby! Penny and I have never been so we thought a trip might be in order before I start my chemo again next week. We're headed to Lost Wages for 3 days and 3 nights at Caesar's Palace. We're planning to take in a show or two, spend some time at the pool, do a little gambling and (according to Penny) a lot of shopping. In fact she's online now printing coupons and mall maps and things like that to make her assault on the Vegas retail world as efficient as possible. Honestly I'm a little scared of the shopping bit but I think the trip will be great.

Family trip to the hospital

Today I had my 6th Glue treatment at the foothills. The last one didn't work at all so I'm hoping that one of these last two attempts will work. Carly and Andrew and Penny all came today to see what actually happens when I go. We got to show the kids the bed and equipment that they use for the procedure as well as meeting some of the nurses that work there. They were very interested in all the goings on. Carly was very good and stood still and asked some questions but Andrew just wanted to run around and push all the buttons. After a few minutes Penny snapped a picture and got the kids out of there so we could actually get started on the procedure. Before I went to the radiology department I stopped off in medical day care to get the one of the chemo nurse to access my port-a-cath (that's the implanted central line I have in my chest to administer drugs/chemo). It's a handy thing to have as it helps the nurses get drugs into me without starting a line which can be difficult after 12 hours without eating or drinking. Unfortunately not all the nurses are qualified to use it so I have to stop off at medical day care to have them do it since they're qualified.

I still haven't heard anything about the PET scan I had last Thursday but I do have an appointment to see the thoracic surgeon, Dr Gelfand tomorrow. Hopefully he will have access to the scan and results and will be able to go over all of it with me. I'm looking forward to meeting another doctor. I hope he's as good as all the others I've met in during this journey. I seem to have been blessed in that department and it would be a shame to mess up my run of good luck.

I got a chance to read the paper this morning and came across a couple of articles of interest. The first one (in today's Calgary Herald page A11) was a study done at the Institute of Human Genetics at Newcastle University in Britain. The findings suggested that taking a daily low dose aspirin may cut the risk of cancer in patients that are genetically predisposed to getting certain types of cancer. Here is an excerpt:

"'We believe that Aspirin may have an effect on the survival of aberrant (faulty) stem cells in the colon' Dr John Burn said, presenting his findings at the ECCO-ESMO European cancer congress in Berlin. Burn and colleagues tested 1071 people with Lynch Syndrome - an inherited condition that predisposes a person to a range of cancers, particularly of the colon - by giving some of them Aspirin and some a placebo. Followup tests after ten years showed that although there was no difference in cancer rates after 29 months, a significant difference was detected after four years, with fewer people in the Aspirin group developing cancer. 'To date there have been only six colon cancers in the Aspirin group as opposed to 16 in the group that took the placebo' Burn said"

It's a little late for me to be trying low dose aspirin now that I have cancer but it may be something to consider if you have either been diagnosed with Lynch syndrome or have a family history of cancer, particularly colon cancer. Taking a daily low dose aspirin can also reduce the risk of heart attack and stroke, two of the other major killers in Canada. It seems like its a good thing to do but talk to your doctor first.

The other article can be found in its entirety online here. It suggests that treating tumors with heat in addition to chemotherapy can mean that patients remain in remission longer and live longer than patients that are treated with just chemotherapy on its own.

"Targeted heat therapy has already shown promise in recurrent breast and locally advanced cervical cancer in combination with radiation, and studies combining it with chemotherapy in other localized tumours such as those in the pancreas and rectum are ongoing. Heat therapy for cancer involves a technique known as regional hyperthermia, which uses focused electromagnetic energy to warm the tissue in and around the tumour to between 40 and 43 degrees Celsius (104 to 109.4 degrees Fahrenheit). The heat not only kills cancer cells, but also seems to make chemotherapy work better by making cancer cells more sensitive. It also improves blood flow, allowing chemotherapy to be more effective."

It seems like this heat therapy treatment may be something that could help me although now that my only remaining tumors are in my lungs (fingers crossed!) I'm not sure if this type of heat treatment could be used (they didn't mention lung application in the article). I have a feeling that with the concrete findings of this study we will see more widespread use of heat treatment for tumor in the soft tissue. Hopefully this technology will find its way to Calgary sooner rather than later!

On clean ipods and another attempted glueing

Penny was intermittently doing laundry the other night while we were sitting on the couch watching tv. After she put some laundry into the dryer we heard a clunk clunk clunk like someone had thrown a set of pliers in there as well. When she went to see what it was, she laughed first then said "Dan, it looks like you may have got your wish". She walked back into the room holding my ipod complete with headphones still attached. You see, for a few weeks before that I had been complaining that my ipod (an 8GB nano) was full and could it please break soon (its 3 1/2 years old) so I could get a new one. Apparently after going for a walk the day before, I left my ipod in my pocket and forgot to remove it. So at first glance it appeared that my wish had come true. However because we are a household that doesn't give up easily (you hear that cancer?) Penny wouldn't take no for an answer. She got on the computer and googled "washed my ipod" which turned up a startling number of results (apparently I'm not the first one to pull that maneuver). One of the suggestions said don't press any buttons and immediately place the laundered ipod in question in a sealed container covered with rice. As skeptical as we were we gave it a shot. A couple of days later we dubiously opened the container to find a seemingly dead ipod. But after a short session of button pushing the screen lit up displaying the 'plug me into your computer" symbol. After plugging it in, I reformatted and charged it and since then it's worked really well. There are a few minor issues (the backlight doesn't always work and the buttons require more force than usual to work) but for the most part it's just like new. Bottom line? Don't wash your ipod. But if you do, make yourself some ipod sushi and you might just find yourself lucky (or is that unlucky?) like me.

I had my fifth glue treatment today. I'm on a first name basis with most of the doctors and nurses there so things go pretty smoothly now. They know what needs to be done and the quantity of drugs to administer. I just show up and hang out and get probed. Of course the glue didn't completely work again this time but they had more trouble forcing it through the fistula which could mean it's closing up. They are going to try again on Tuesday and then again on Thursday with the hope that having the treatments closer together might help. We'll see how that goes.

In other news, today was my last day of the chemo pills. I feel pretty good all things considered. My main side effects are fatigue, hot hands and feet (it feels like the palms of my hands and soles of my feet are sunburned) and a constant mild nausea. Overall its been quite manageable. Obviously I'm not looking forward to starting the serious chemo in 10 days.

That's all for now...

PET scan

Today was the day for my PET scan. I've never had one before so it was all a new experience for me. Basically the PET scan is used to create a 3 dimensional image of the body highlighting areas based on their glucose uptake. An analog of glucose (Fludeoxyglucose - a radioactive positron emitting glucose molecule) is injected into the body about an hour before the scan. Sited in the body which use glucose take up the sneaky little radioactive glucose molecules so that when the scan is done, areas of high glucose uptake are highlighted. Because cancer cells use glucose at a higher rate normal cells in the body, they show up well on a PET scan.

When you go for a scan you have to go an hour early. They test your blood glucose levels and then send you to a lead encased room (no wonder why my blackberry wouldn't work!) where you get injected with a small amount of the fludeoxyglucose. Then you have to sit still for an hour while the glucose makes its way into the body. You're not allowed to move at all and reading and listening to music are even banned. I fell asleep (what else was there to do) and when they came to get me for my scan I was truly relaxed. The scan consists of an initial CT scan to calibrate the machine and to get a 3D picture on which to drop the positron emission data, followed by a half hour slow scan to get that positron emission data. It is completely painless and I nearly fell asleep again during the scan.

When I came out from my scan they were preparing the next patient. He was a little boy about Carly's age without a single hair on his head. He was excited about being weighed and measured but the parents (mum was pregnant!) looked a little nervous. The nurses had to start an IV which no 4 or 5 year old likes I'm sure. The nurses had to hold him down while they did it and the whole time he was screaming "Help me mommy! Help me daddy!". It was heartbreaking to watch. Eventually they got the fludeoxyglucose into him and then they sedated him (what 4 year old do you know would sit perfectly still for an hour then lie perfectly still for half and hour for the scan?). I left after that but I felt so bad for the boy and his parents. It made me thankful that it wasn't my child going through that. As hard as this journey has been, it would be infinitely harder to watch your own young one go through the same process.

I expect to have the results from my scan early next week if things go well. Of course I will post the results here when I get them.

PET scan: Tomorrow is the day!

I got some good news on Monday. I got a call first thing in the morning from Rose the PET scan booking clerk. She told me that they had a cancellation for this Thursday and that if I wanted the spot it was mine for the taking. I was originally scheduled to have another glue treatment that morning so I had to make a call to the angio booking office and see if they could move it to Friday instead. By some miracle of the medical booking gods, they had a spot at 8am Friday morning. So, I will have my PET scan tomorrow and my glue treatment on Friday.

I'm not entirely sure but I think a friend of Penny's brother Rod had a little something to do with getting my scan moved up. He's an interventional radiologist who works in the Foothills hospital department where I have my glue treatments. I saw him last week when I was in and he introduced himself and said he would "talk to the booking clerks about moving my scan up". I'm not sure what he did if anything but my thanks go out to him none-the-less.

PET scan - Alberta Health Care Comes Through

Today I spent a good deal of time harassing Timely Medical in Vancouver for a Pet Scan date and location. I was originally hoping to have one this week and since it's Wednesday I thought they might want to let me know what was going on before the week is done. While I was waiting for them to return my call I got a call from the PET scan booking office at the Foothills hospital here in Calgary saying they had a date for me. October 1st was their initial offering but I pleaded for an earlier date and got one: September 24th at 12:15, two weeks from tomorrow. While it would be nice to have one sooner, having one in two weeks shouldn't really affect the timing of my care given that that week I'll be starting my FolFox chemo. I don't yet have a date with the thoracic surgeon so as long as I see him after the 24th he will be able to look over my scan and decide on the timing and type of surgical option that will fit for my care. Pretty good news all things considered.

So far the chemo I'm on is not so bad. My worst side effects are fatigue and a weird taste in my mouth. Not nearly as bad as when I had the 5Fu but its no fun. I have a constant craving for sweet things like fruit and fruit juice and gummy bears. Tomorrow is day 6 which means I have about 8 more days to go and then I get a week off. I'm looking forward to that!

I have my next glue treatment tomorrow. Things feel pretty good down there right now so I'm hoping that they can do a sineogram tomorrow and tell me the fistula is all healed up. It would be nice to put this drain thing to bed once and for all.

Carly had her first dance class today. She had fun but was disappointed they didn't do ballet on their first day. Maybe a few basics first honey before you tackle Swan Lake?

Who thinks this up?

200 or so people with a little too much time on their hands...

4 out of 4 doctors agree...

This morning I got an email from a friend who has a thoracic surgeon for a brother. She was kind enough to refer him to my blog and ask him his opinion on my course of treatment (chemo first then surgery as opposed to surgery first then chemo). He concurred with my other 3 doctors that really the key at this point is to attempt to control the microscopic disease. Without having that in control there is little point in going forward with surgery. Here's what he had to say in his own words:

"Wow, this guy should write novels. I managed to get what I could from the blog, which seems to skip over some details. As I see it, he has stage 4 colon cancer, and has had chemo followed by surgery. He then has an abcess and resulting fistula, but underwent removal of 2 liver mets. It seems he is just now starting his post-op chemo, and now he has at least 3 lung mets.The issue here is cancer behaviour. His tumour has clearly demonstrated an aggressive ability to spread. What we see is the tip of the old iceberg. His hope for control and potential cure rests with control of the microscopic disease, not what is visible. I think surgery now is ill-advised. Go for the chemo. If it allows further tumour growth, then clearly surgery is and would have been futile. If no further tumours appear, then consider removal of the lung lesions, assuming that complete re-staging shows nothing else.Believe it or not, cancer is no longer considered a surgical disease. Chemo used to be adjuvant treatment after surgery. Now surgery is adjuvant treatment to chemo, since microscopic disease is the real action.Best of luck to him. He sounds like a hell of a fighter, and attitude is hugely helpful in my opinion."

It seems that slowly we're accumulating a consensus among the doctors and that fact in itself is tremendously comforting. With each piece of information the path becomes a little more clear. I still plan to pursue getting a PET scan ASAP (still no word on that today!) as I see that being a helpful diagnostic tool going forward.

Happy Tuesday all.

Six Years

Sunday was our 6th anniversary. We celebrated by going out for supper at The Mackay Place in Millarville, followed by a stop at DQ for a couple of blizzards (I recommend the oreo cookie jar blizzard with oreo cookie, cookie dough, and fudge. yum yum.). Penny's mom looked after the kids and put them down for the night while we were out. It was an enjoyable and relaxing night.

3 out of 3 doctors agree. It's chemo time for me.

The past few days have been a little stressful around here. It feels like my treatment has come to a crossroad where a decision has to be made about which direction to go. With the discovery of some suspicious nodules in my right lung it's clear that my battle against this terrible disease is far from over. The decision we're facing now is do we do surgery or chemotherapy first? Our first thought, as with the tumor in my colon and the tumors in my liver was to get them out ASAP. My medical oncologist, Dr Lupichuck, is of the opinion that we need to address the possibility of further spread now and start chemotherapy. She says that chemotherapy will act on the existing tumors in the lung while at the same time working to kill off any microscopic disease elsewhere in the body. The risk of doing surgery now is that I could go through all the pain and suffering of another surgery just to have more tumors sprout up in my good lung. I can see her point but I sure don't like the idea of walking around with tumors in my lung for the next 3-4 months.

Dr Lupichuck talked with a thoracic surgeon, Dr Gelfand, and gave him the coles notes of my medical status and asked him what his approach would be for someone in my situation. Dr Gelfand said he thought he could remove the existing tumors in my lung with what he called a series of wedge resections. He thought there wasn't a need to remove the entire lung at this point. One of his main concerns was that while I was waiting for surgery and recovering from surgery the microscopic cancer cells that are floating around in my blood and/or lymph system could form more tumors. His suggestion was similar to that of Dr Lupichuck in that he suggested that I undergo an intensive 3 month period of chemotherapy (FolFox + Avastin) and have a PET scan to make sure that there are no other tumor sites, especially in the left lung.

As part of her multidisciplinary approach to finding the best possible course of treatment, Dr Lupichuck also spoke to my colorectal surgeon, Don Buie about what he thought was best and what the plan would be to deal with the drain that I've had for 4 months that has thus far prevented me from starting my chemotherapy. Don actually called me the following day to tell me what he had discussed with Dr Lupichuck, what the plan was with the drain, and most importantly what the best possible course of action would be for me. His advice was the same as the other two doctors. He suggested doing chemotherapy first would be the best approach at this point. He said that the drain won't be a real reason to slow anything down. He said I could have surgery and/or do chemotherapy with the drain in place. The risk of infection would be higher but that could be adequately controlled with antibiotics. The bigger risk of starting chemo now is the same as it's always been: chemotherapy affects the body's ability to repair itself so my fistula may take longer to heal on chemo or it may not heal at all. He said there are surgical options for dealing with the fistula and abscess later but not to give up on the glue just yet. As with the other doctors I talked with about the glue, he said that it sometimes takes many attempts to get it to work.

So after talking to three doctors the consensus was: do chemotherapy first and look at surgery later on down the line once a) chemo has had a chance to kick the microscopic disease in the butt and b) I've had a PET scan to make sure I'm clear for surgery. In a welcome departure from normal, I was able to pick up and start my chemotherapy drug the same day I decided I would do it. The plan at this point is to do a 3 week cycle of capecitabine (the pill form of 5Fu) a mild form of chemo, while we give my fistula and abscess a chance to heal with the glue. After that 3 week cycle, weather the fistula is healed or not, I will start a more intensive 3 month regimen of Folfox (fulonic acid, 5Fu, oxaliplatin) and Avastin. During that time I will have a PET scan (hopefully next week) and get in for a consultation with doctor Gelfand, the thoracic surgeon. My hope is that directly after I finish the FolFox+Avastin chemo I will be scheduled for surgery where he can get all the nasty bits out.

As part of our research and as an attempt to cut down on the amount of time we spend waiting around, Penny and I have been looking into getting some treatment privately either in Canada or the US. While this option is expensive it is well worth it IF you can locate a reliable surgeon/hospital and IF it will save you a bunch of wait time. There are also private imaging clinics that offer PET scans, MRIs and CT scans if you can't afford to wait for those either. Since the wait time for a PET scan is long, 6+ weeks here in Calgary, I'm looking at getting one next week in either Mississauga or Bellingham. Because my thoracic surgeon needs one of those in order to accurately image the nodules in my lungs, this will likely speed up the timing of my first meeting with him and could stand me in good stead for my surgery later on. I'm arranging this through a company in Vancouver called Timely Medical which specializes in matching up Canadians that are tired of waiting for treatment, with doctors/hospitals either in Canada or the US that can provide treatment. They are an interesting company and have been very helpful so far.

At this point I'm on day 1 of my first round of chemo. I'm not looking forward to the next few months but it's just something that needs to be done. I hope it all goes smoothly...

3rd time lucky?

On Thursday I had my 3rd glue treatment to try and seal off the fistula that connects the abscess to my colon. The first two treatments didn't work and the doctors say that it often takes 5 or 6 treatments before it works. They also say that it sometimes doesn't work at all. The whole point of this glue treatment is to prevent the need for more colon surgery which would remove the abscess but also likely result in me having to live with a bag permanently. Honestly at this point I couldn't care less if i have a bad permanently. I would be happy to live to 80 crapping in a bag the whole time. So, I'm booked in for two more glue treatments over the next few weeks. Hopefully one of them works so I can move on to the next phase of my treatment.

Today's fortune cookie

Today's fortune cookie, originally uploaded by DPC Tutt.

I think one needs equal doses of time and truth when dealing with cancer.

a year spent

a year spent, originally uploaded by DPC Tutt.

Its been a year since my diagnosis. What a year its been. Get yourself a colonoscopy so you don't have to go through the same thing.

Dave and Dave in Comox

This past weekend two of my friends from university bought me a trip out to visit them in Comox BC. Needless to say it was a great time. We went out for a couple of nice suppers, cooked some killer ribs on the BBQ and spent a couple of days cruising about on a boat. A fair amount of alcohol was consumed (I'm not on any meds right now so I could actually partake!) which resulted in an obscene amount of singstar being played. None of us can sing so we were all equally terrible which made it quite fun. On our second night we got asked to tone it down a bit by one of Dave's neighbors. He asked what we were doing and when Dave replied that we were playing a karaoke game he said "That's why it sounds so bad!"

It was also great to catch up with Ashley (soon-to-be wife of Dave #1) and her 9 year old son Levi (a fellow cancer survivor). Levi and I compared war stories and scars. It was also great to see Katie (future wife of Dave #2) who just moved up to Comox from Nanaimo to live with Dave #2. I hope we all get to hang out again soon, perhaps here in Calgary?

Thanks again for a great weekend Dave+Dave

I hate cancer

Now its threatening to kill me and its really pissing me off. Why can't it just piss off already?

I met with my medical oncologist yesterday and found out all about what the results of my latest CT scan mean. It was a long, depressing meeting but at least there is some semblance of a plan now.

So far I've has about 12 CT scans over the past year but only 3 of those have been of my chest. I hand one when I was originally diagnosed in September 08, one before my colon surgery in January 09 and one a couple of weeks ago in August. When I was in the hospital last week or whenever it was, I had a CT scan that showed 2 "suspicious lesions" in my right lung. Well it turns out that there are actually 3 lesions in my right lung and one of them was actually there in the CT scan I had in January 09. The radiologist that looked at my scan in January didn't see or didn't make a note of the lesion that was in my lung at that point. But the radiologist that looked at my most recent scan saw the three lesions and looked back at my January scan and made a note that one of them was actually there in January and had grown in size from then to now. So to summarize there are 3 small (~5mm in size) lesions in my right lung.

One of my first questions about these lesions was are they actually cancerous? The lesions are too small to biopsy and without a biopsy we won't know for sure. However it is highly likely that they are metastases and going forward we will treat them as such.

I know from previous discussions with lots of my doctors that the only real possibility for a cure is the removal via surgery of all macroscopic cancer. Without surgery a cure is not possible, so obviously I was curious to know if I was a surgical candidate. My doctor said that she would talk to a thoracic surgeon, show him my file and try to get a quick first pass opinion as to if I could be a candidate. I heard back from her today that the thoracic surgeon thought I would probably be a surgical candidate. He thought he could probably do 3 wedge resections and remove the tumors without having to remove my entire right lung. Obviously that is great news and Penny and I were tremendously happy to hear that a cure is still not totally out of the question.

As with all of my cancer treatment to date, it's not just a simple case of make an appointment and cut out the nasty bits. There is still the drain in my butt to consider and the likeliness that there is still microscopic cancer floating around in me. My oncologist was keen to get on with chemotherapy in order to make sure that no more tumors form. BUT I can't go on chemo until my drain heals up since chemo affects the body's ability to heal. Also, before the thoracic surgeon will give me a definate yes on my surgical candidacy, I will need to have a PET scan. These are scanners are rare (there are only 3 or 4 in all of Alberta) and hence difficult to get an appointment on.

The ideal scenario according to my oncologist would be something like this: Thursday, get more glue in my drain and pull the drain, then wait for it to heal (maybe a week or two?), then have a PET scan, then start a 3 month cycle of intensive chemo, then have another PET scan and see the Thoracic surgeon, then have surgery. My problem with that scenario is that there are lots of moving parts and lots of potential wait times and one thing I've learned the hard way over the last year is that time is crucial. So Penny and I presented a different potential scenario that may work better, although it will be quite costly: Thursday get more glue and potentially get the drain removed, organize a PET scan immediately in Toronto or Bellingham, a week or two following the scan have my lung surgery somewhere in the US (then my drain and my lung can heal at the same time - don't forget I had my liver surgery with the drain in my butt), about 1 month following surgery when my lung and drain have healed, start chemo for 6 months. We've already looked at the US as a means of speeding things up and have leads on PET scans and hospitals. It takes about a week or 10 days to get either surgery or a PET scan using options in the US. The risk with the option that Penny and I presented is that the microscopic cancer doesn't get treated and more tumors form before I'm done healing from the surgery. I guess there are risks either way.

So, there is lots to digest and lots to think about. I suppose a lot depends on how things go with my drain on Thursday. If it goes well then I could be starting chemo soon but if not then maybe I will need to consider the US options.

More Glue

I got more glue put in my drain this morning. The doctor that did it says they sometimes have to try 5 or 6 times before it actually works. Hopefully it doesn't take that long for me. The procedure this morning was quick and somewhat painless. The glue they put in last week didn't work for some reason and got flushed out. The doctor suggested this time that we don't flush it between now and my next glue appointment next week.

In other news, I'm headed to Comox for the weekend to visit some friends. It should be a good trip and a welcome change of scenery. It's especially nice given that its only a one hour flight direct from Calgary.

Gotta go put the kids in the wee pool outside. It's a hot one here today!

Finally, summer!

The forecast for this week looks great in Calgary. We've got some friends staying with us right now from Kenya. He works for the UN doing security work. This morning he was on his cell phone, helping to coordinate the movement of 13,000 refugees across Kenya by bus. I don't think that there's a more different job out there.

I just got back from my family doctor where I was following up on the blood tests I got in the hospital last week. It turns out that all of the subsequent blood cultures turned out negative. That means that the one positive test I got in the hospital was either contaminated or it was a fleeting infection that my immune system took care of before I got more blood taken two days later. I feel great and I'm up for having a great week in the sun.

One Step Forward, Two Steps Back

It's been a busy week. We were planning on heading out camping on Tuesday with our neighbors for three nights but I woke up Tuesday morning at 1:15 with a wicked headache, chills and a fever ranging from 38.5-41.0 degrees. I stayed home for a few hours but eventually hauled myself into the ER. The nurse who saw me first drew a whole bunch of blood before the doctor even saw me and sent it off. She gave me some tylenol and ibuprofen which lowered my fever and almost completely got rid of my headache so that by the time I saw the doctor I had virtually no symptoms and felt like a tool. But he was thorough and would not let me leave without having a try at finding out what had caused my fever and headache. My white blood count came back normal so a bacterial infection was unlikely (we both thought that my drain and abscess may have become infected again and caused my symptoms). So in a last ditch effort, he sent me off for a CT scan to see if the abscess looked bigger or had changed shape since my last scan. Since I was scheduled to have a scan next week anyways this was actually going to save me time so I was totally in favour.

An hour or so after my scan, he came back into my room with a long face. He said that the good news was that the abscess seemed to be smaller than my previous scan and that it was unlikely that it was the cause of my fever and headache. He also had two rather distressing pieces of information to share that he had gleaned from the radiologist that looked over my CT scan. The first thing they were worried about was a possible blood clot in my leg. He said I would need to go for an ultrasound immediately to confirm and then go on some high powered blood thinners and clot busters. The second, infinitely more distressing piece of news, was that the radiologist saw two spots in my right lung that were "suspicious for metastatic disease". Curiously enough this was similar to the wording I got on my first CT scan almost a year ago when they thought they saw some spots in my liver that were potentially cancerous. Needless to say I was pissed, scared and frustrated by that news.

So after that bombshell I got shipped down to the ultrasound department for a scan of my leg. The tech was good and fast and said that she couldn't see any signs of a clot in my leg. She also said that they frequently get false readings for clots on the CT scan. It has something to do with the contrast dye they inject into your blood while they are doing the scan. For this reason, ultrasound is a much better tool for seeing clots than a CT.

Once I got back to the ER the doctor came back to talk and said that since I was feeling better and since I didn't have a blood clot I could go home. He said I should follow up with my oncologist ASAP to find out what the plan was for dealing with the probable lung mets. So home I went.

With our camping trip delayed because of my impromptu trip to the ER, Penny and the kids were waiting for me at home. So we packed up the rest of our supplies and planned to get a good nights sleep Tuesday night and then head out to McLean creek first thing in the morning. BUT that afternoon I got a call from my colorectal surgeons office saying that I was booked in to have glue inserted into my drain Thursday morning. It was seeming like our camping trip was not going to happen, but we talked and agreed that we would all go out for the day Wednesday and Penny and the kids would stay overnight while I would drive home and spend the night so I could be at the hospital first thing Thursday morning. So we got a good sleep and first thing Wednesday we went out, set up the trailer and spent the day. After the kids were in bed, the marshmallows were slain, and the fire was dieing down I drove back home. Before bed I checked the messages (good thing I did) and there was a message there from the ER doctor on call saying that my blood culture results were back and there was something worrisome and could I please call or come in ASAP. Being somewhat accustomed to receiving dire medical news of late, I gave the ER a call while I brushed my teeth. The doctor said that one of my blood cultures had grown strep bacteria and I needed to come in to repeat the test and/or be treated. I said I had to come in first thing in the morning anyways and could I make a day of it and see him after my morning appointment? He said that would be fine. I also needed to get my chemo port flushed so it truly would be another fun filled day of procedures and tests at the Foothills.

Thursday morning I went in (thanks for the ride Sandi) to start my day of fun. The glue-in-the-drain thing went well and the doctors were cautiously optimistic they may have solved the problem. During this procedure they just filled the fistula (sp?) - the passage between my rectum and the abscess - with glue. If it has made a water tight seal then next week they will fill the entire abscess with glue and pull out the drain. I am scheduled to have that done Thursday next week.

After the glue thing was finished I went to the chemo day care unit to have my port flushed. It worked fine (at least something did) and then I was off to the the ER. Once I got there I got right in and got a bed and they proceeded to draw more blood and do more tests. The funny thing is it takes about 48 hours to do a blood culture so after all the tests they didn't know any more than when I went in. They had to make a decision. Do they treat me for strep based on the first test alone or do they wait 2 days to get the results back from these blood tests to find out if I actually have it? That required a call to the infectious disease people who didn't call back for 3 hours. In the end they decided to put me on antibiotics as a precautionary measure. I will follow up with my family Dr next week to see if the most recent tests came up positive as well. Either way it doesn't really matter. I'm on the antibiotics anyway.

I finally managed to leave the hospital at about 4. I stopped at home, DIDN'T check the messages and headed out to meet up with everyone at the campground. We had a great time and the weather was awesome. It got a little cool at night (maybe down to 8 degrees?) but that was fine, we had a nice furnace to keep us warm. Nancy and Art also cooked up a HUGE breakfast this morning and coupled with a little Bailey's and coffee there no chance of being cold.

So you see it has been a busy week for us. Next week will be lots of fun too. We have friends coming to stay with us all the way from Nairobi, Kenya! We can't wait to see them and hear all about their adventures in Africa.

That's all for now.