Tuesday, 18 October 2011

October 18


Wow I can't believe that it has been over a moth since I've posted. Their has been many day to day reason why I didn't post but nothing huge. Most just due to lack of time.

Overall I'd have to say that my focus has been on my health, looking after my family (getting them off to the first day of school) and digging up plans for potential next steps with different medical teams.


The boys and Tanya also created a Thank You note for the Sisters in Antigonish. When I look at this you can tell it was created by young boys who have more enthusiasm for drawing than talent :-)

Quick update on my health.
  • Oct 11th received my 6th chemo treatment of FU-5 and Avastin, a bit of nausea but no other side effects
  • At my Sept 27th chemo I had a false positive for too much protein in my system so they skipped Avastin but still got the FU-5, I was a bit miffed but what could I do
  • White and red blood cell count is still low but within normal, continuing to take iron pills
  • My only real side effect is the tumor that is poking into the colon between my large and small intestine. This has put me out of commission for a few days, more on this later 
  • Based on the last catscan the good news is that my tumors have all either stopped growing or gotten smaller. This puts me in the 45% of people who have positive success with chemo at this stage, very good news. 
  • However, (their is always a catch) chemo is not a long term cure. It will help shrink tumors but not remove them. The only long term solution is surgery to cut out the growths. 
My three areas with tumors:
  1. Large Colon: this is the starting point of my cancer. It will also be the last to be treated by surgery so I need to get the other two looked after first. Due to the tumor location this will be complicated surgery but we have some great doctors who might be able to do this. First step is to look after the areas where the cancer has spread. 
  2. Liver: two of my lobes have metathesis. From what I've been told this is good, it is common for patients to have five or more lobes with tumors. Should be able to treat quickly if not for the other issues. This might be treated by radiation or surgery, still in the early phases of referrals to doctors on this. 
  3. Peritoneal Cancer: this is the real complication, I'll rely on the links for details. The treatment is either HIPEC or surgery to remove the tumors. One of my peritoneal tumors is large and puts both option at risk. So my focus has been on lowering the overall risk factors.
Next Steps with Treatment
  1. Continuing with chemo is my first option. Not going to stop chemo until I have a commitment from a surgeon. I'll need to halt chemo for four to six weeks before any surgery and might need to go on again for a few treatments between surgery. 
  2. HIPEC - as mentioned my risk factors are too high for any HIPEC surgeon in Canada. I've sent my files to Dr Shen in North Carolina and expect to hear back from him this week. He comes well referred. He has done similar cases to mine with HIPEC and liver resection at the same time. I'm putting this down as a 20% chance of happening but I need to look at all the options. 
  3. Liver Radiation - looking into this as a way of lowering my overall risk factors. If we can get rid of my liver as a complication factor my overall risk factors go down. This might put me into the category for a surgeon to proceed with HIPEC.
  4. Colon Surgery - to be honest this has been lower down on my priority. The location of the growth is complicated (don't ask me why but I trust the several people who have said this) but I know that we have world class surgeons in this area at Sunny Brook and Princess Margaret. I'll start making plans when we are closer to this phase. 
Overall. I have no idea how people work through our medical system. We have great vertical experts. They can tell you about studies that are in progress, cutting edge work and how this impacts your treatment. However, if you ask them what the next person in the treatment chain does they are lost. Thankfully I've run into a few people who understand that treatment needs to cut across the vertical experts and they help put a plan in place that covers and end to end view.

From taking with other patients I can honestly say my experience is the exception. People end up bouncing around from doctor to doctor. Often with the wrong diagnosis or treatment. Not sure what the fix is but Cancer Care Canada has some great people once you start digging and putting in time.  Having a supportive Family Doctor seems to be key as well. 

Other stuff. Cameron has started to play in a hockey league. None of the parents or kids seem to be under the delusion of playing in the NHL - the focus is on skills and having a good time. Cameron is playing defense and enjoying it. We have been watching some great defense tips on youtube - who knew the internet would be useful for something?

Cameron is also continuing with gymnastics and music lesson on flute, drum and choir. Again the focus is fun.  Not sure what he will do long term but many many years for him to figure that out. 

Gavin is also taking general music lessons and gymnastics. Based on his request he is also taking Irish Dance and Jazz lessons through the city.  He is often the only boy in the class. When he asked about this I told him that he was more than enough man to balance off a class of girls. He seemed happy with this answer for now. 

RIM sent flowers the other day. They were very nice and made the house smell nice when fall days turned cold and rainy. Some people asked why all the baskets and flowers were only from my wife's work. I was under no illusion that people from  RIM did not care. Many people from RIM reached out via notes and I had many heart felt conversations. Team lunches were also very supportive. Lets be honest, when your team is made up of some of the top engineers in the world plus 90% male, expecting them to send flowers is a stretch. I know they care and they demonstrate this in their own way.
Just wanted to say, thanks for the flowers!

Wednesday, 14 September 2011

Sept 14

Wow that was a long nap. Had a chemo treatment yesterday and got my results back from the scan. Most of the tumors are starting to shrink which is a good thing. One was getting just a bit bigger. None have spread into other parts but my lungs were a bit cloudy, most likely a cold.

As per the habit I've started, I was planning on leaving an update today and maybe giving a link to the recent radiology report. However no time to do that as I need to get ready to pick the kids up from school.

I need to remember that taking a second sleeping pill at 3am might not be a good idea. Although I do feel well rested and fully awake!

Thanks Matt for coming down for the treatment yesterday. It was nice to get caught up.

Later,
Stephen

Friday, 2 September 2011

Sept 2nd

We had a bit of drama on Wednesday before my chemo appointment. The short story is that I had a sharp pain in my lower gut on Tuesday and Wednesday. When I told the medical oncology doctors about this they were concerned that my large intestine had been ruptured by the tumour and that I would need emergency surgery to fix this.

This was one of the key concerns when I went on the chemo drug Avastin. It is an effective drug at fighting cancer due to its ability to halt the growth of new small blood vessels. Not sure why but this helps shrink tumours and delivers the other chemo drugs more effectively.

The risk is that being on Avastin extends the recovery from surgery. Basically if I had this surgery I'd stop being a cancer patient for 6 to 8 weeks until I recovered. Then I could go back on chemo but not Avastin. Not good news.

However after getting some 2nd and 3rd level opinions from radiology the doctors changed their minds; just as I was being admitted for emergency surgery. They determined it was not a ruptured wall. It was the same tumour that had changed shapes and shrunk a bit. It was now irritating another muscle that was causing my pain. No need for sugary, just need to adjust my diet. This worked well and the pain is now under control. They also competed the chemo treatment with Avastin as planned on Wednesday.

While I'm glad they were organized enough to pull all of this together in a few hours it was  very stressful for both Tanya and I. At the end of the day you just need to take a deep breath and remember they are only human and in the rush to keep me alive they can sometimes make snap decisions based on partial data. It is so important to keep your head about you even in the most stressful time and ask probing questions to help others make informed decisions.

Today I had the chemo bag removed by a Spectrum nurse (moved on from VON due to scheduling conflicts). I then went out for a good-bye lunch at a great Indian place for the end of term co-ops from RIM (Andrew you will be missed) and slept most of the afternoon. All in all it was a very good day.

TX - Stephen


Monday, 29 August 2011

Aug 29

Two more days until my fourth chemo treatment. Today and for the past few day's I've felt fine. I'm getting used to having to answer that question twice whenever I talk with someone. ... really I'm fine, maybe a bit of numb pain in my gut but outside of that I'm feeling fine.

Next week I should be going in for my next catscan and we will see if progress has been made. Until then not much I can do other than staying in shape, getting exercise and eating right.

The Wed meeting with Dr Burkes should be a long one. I've put together a few tests that I'd like run and some studies that I'd like to be part of. Not sure if I will get any push back but I feel these tests will need to be done sooner or later so why not now. I'm sure we will be able to find a way of getting the tests done that will be pain free for everyone ;-)

Not sure if you are reading this but thanks for Jane for your input and guidance. Several other people have been helpful with medical perspectives and helpful hints on what can be done and how to go about making it so.

From a much larger perspective I'd like to thank the Sisters of Saint Martha in Antigonish. The sisters "are storming the skies with prayers." I'm still in awe of the Sisters I was able to meet with. Not sure how to put into words the strength they demonstrated based on a lifetime of providing support to others. A lot of people talk about religion but it's striking when you meet people who have walked the walk of "doing unto other as ..."

I also keep with me almost all the time the rosemary beads that my cousins Joan and Judy lent me. They have a bit of a history to them that I'll keep out of the blog. To say that I have a scientific view of religion might be appropriate. However, to blindly cast aside 5,000 years of thought on the human condition and how to be a better person would be a huge mistake.

At some point in my life, many many years ago, I knew how to say the rosary. I needed to find some online Rosary Cheat Notes to help me. Since then I've said the rosary a few time. Found it to be useful in helping provide some calm and meditation on larger topics. I never would have gotten them on my own so I want to thank Joan and Judy for passing them along.

If you do have time please visit the Sisters' facebook page or the website above. The art work and stain-glass windows are straight of of 1970's catholic art work, bit of a blast from the past.

Anyways, I thought today's post would only be a few lines. I still have to post some photos from the Boyd Family reunion but that will need to wait for another day.

TX - Stephen

Thursday, 25 August 2011

Aug 25

Just a quick update


My third chemo treatment on Wed Aug 17th went well. Thanks to Cindy to coming down for the treatment. We went out for a nice lunch on a tree covered back patio a few steps from Mt Sinai. 


My side effects are still very low. Most of them have to do with bowel movements. Too much or too little. It's best managed with eating right and getting out and walking around. Just knowing this also helps manage some of the stress. The home grown tomatoes and veggies from my in-laws garden also came at the right time. For now I'll just have to dream about adding few thick slices of crispy bacon on the tomato sandwiches.


The only other side effect is the need for extra sleep. It's an odd sort of sleep. On Friday I was able to get in some exercise but right afterwards I needed to slept for a few hours. My energy level was still high from working out but my body was saying sleep. Not going to fight it but it's odd to feel energetic and to fall asleep at the same time. Once I woke up I was fine but a few hrs later it was back to bed for another nap. So far this only lasts a few days after the chemo treatment.


My next chemo treatment is on Aug 31. Followed by a catscan the week of Sept 5th. The results of the catscan take 5 days. This will be the first opportunity to see if the treatment is working or not. Not sure what to expect. Based on case history there should be some improvement but everyone's cancer is unique. There is no standard road-map that covers all cases. I've been in touch with several people on next steps based on different results  ... again you can take the boy out of project management but not .....


On Monday Aug 22th I attended my first group session at the Ellicsr center at Toronto General. This is a brand new center in the hospital basement. After passing by a boiler room, some dusty old boxes and a scowling security guard, you enter a bright and warm conference center with modern meeting rooms, leather chairs and a kitchen fit for a TV show. I half expected to see some sleep deprived developers playing foosball in a corner. I'm looking forward to attending on a regular basis. Shaniah Leduc, is leading the sessions. She is a wealth of knowledge and contacts.


Want to thank Colleen, Sandra and Karen for coming into town for lunch today. It was very nice and the food was great. Next time we will need to go for Thai. Sorry for making everyone go for a bit of a walk but the weather was so nice. Gerard and I will need to meet up another day for lunch or I'll bring the boys to Burlington for a swim. 


Thanks for the comment on the last posting from Mike and Pierre. The rant was longer than expected. I was glad to see that people got through it and still had time / energy to comment. Let me know if you are having problems with posting comments or just send them to me and I'll post them. 


Anyways, so much for the quick update. Need to get my sleep, tomorrow I'm off to the CNE on my own to see if I should take the boys or not. I'm thinking no but we will see, the kids have been on enough rides this summer. In the afternoon I'm attending Cameron's Art Exhibit after a week at AGO camp. Not sure how much ability any eight year old boy can have but I'm sure he will make this up with enthusiasm. 


Sorry if I forgot anyone over the past few days. Thanks to everyone for your support. 


Later, 
Stephen 

Thursday, 18 August 2011

Aug 18 - comment on e-health

This is a bit of a rant but please do read, especially if you are in Ontario. If you have a few moments please listen to the TED talk on the same subject e-patient Dave, thanks for passing this along Andrew.

One of the hardest things that I've seen since begin diagnosed with cancer is the incredible lack of technology being used in healthcare and the huge risk this causes for us all.

The contrast on how day to day work is done at hospitals is striking for anyone coming from a large company. The database, network and privacy challenges have all been dealt with for several years within banking, insurance, food care let alone high tech companies like RIM where I work. All of the examples that I'll note have been in the market for several years.

Anyone who says that Ontario's challenges implementing e-health have anything to do with technology or privacy delays is either ill-informed or lying to you. This is like saying that we can't extend the 407 until we learn more about pavement technology and how cars work. 

For several years we have all been able to move our money around the world at the push of a button. We can email in photos to our insurance companies who attach them to our files. We have cutting edge data bases of all Ontario students marks for the past 20 years. Health care data bases for all zoo animals around the world. We created encryption technology for BlackBerry devices that governments such as England and India cannot break.

This is not fantasy and almost all of this in-market cutting edge work was done in ONTARIO. I've worked on or worked near the teams who did much of this work . We have some of the top technology, legal and privacy experts in the world as our neighbours. The GTA is a world class banking, insurance and tech capital. So we have the resources available to do this work relatively quickly and painlessly. 

Why I am so upset is the risk with delays to proper e-health are held by the patient. You have no idea how much time and focus Tanya and I have spent ensuing that everyone has the proper data, correcting mistakes and ensuring relevant data is shared with the right teams. 

In my case this is not as bad since Tanya and I are used to doing this as part of our jobs. But how many people go into cancer treatments with this skill or have the time / energy to keep on top of everything   

Billions of dollars have been spent on e-health in Ontario and all my reports are still faxed around in the hospital. My main file is on paper with no backup. To keep my doctor up to date I need to give her a call or send copies of the hospital reports myself. Again the risk of missing or delayed information is borne my me and only me.

The cost to the rest of us is also high. Forgetting about the money spent on e-health so far that could have gone to research or care. There is an on-going cost to all of us for not having centralized data. Most of the tech projects that I've worked on needed a cost benefit analysis. The major  benefits are proving fast and more accurate data so decisions can be made based on data vs intuition. The goal is to make quicker and more accurate decisions on time sensitive issues.  It is hard to understand why companies that manage your money understand the importance of accurate data while heath care management does not.

It is easy to forget how immersed we have all become with technology. Need to think back to the 80's before ATMs were all connected, no cell phones, no google maps no facebook. This is what I feel like as a patient in our health care systems. Most information is passed along by phone, fax or dropped off in person. 

Please have a look at this Ted Talk, he does a great job of expressing some of the same frustration and discussing some of the advancements that should have been made already. e-patient Dave

Not to get too political but feel free to ask your local MPP about this when they come around looking for your vote. If they tell you the delays have anything to do with technology please remind them of the great work that has been launched by local companies.

Sorry for not making this clearer sooner. This rant is about the health care managers not the health care staff. I can't say enough about the quality of the doctors and nurses that I have been working with. They have my full trust and I'm comfortable putting my care in their hands.

What I want is for them to be given the tools they need to do their job better. I'm confident that with modern tools (not expensive and troublesome cutting edge tools, let's learn to walk before we run) that our heath care workers will be able to come up with innovative solutions to outstanding problems.

Not sure if anyone else has noticed this but feel free to comment.

To end on a positive note, the weather has been great this summer and I can't remember one smoggy day. Not sure why but someone needs to keep up the good work!

Tuesday, 16 August 2011

Aug 16

It has been a bit since my last update. In a nutshell I've been busy with my kids and working on my health. They are my two most important things at the moment. The blog has been great at helping me get my thoughts together and letting people know my current status.

With the kids back in daycare and heading back to school soon I expect to have some time outside of family and heath to provide more regular updates. If you are looking for a similar blogs with more regular updates you might want to follow Brian Koffman's Great site written from a cancer patients view. He is also a doctor out of California.

My second chemo treatment on Aug 3rd went well. The follow up care from the nurses was fine. My chemo bag was removed on Aug 5th on schedule. No side effects other than some constipation and the opposite of this.

The constipation did get me a bit concerned. When the doctors gave the OK for me to get Avastin they gave me many warnings about my existing partial blockage of my large intestine. The worst case is a full blockage and the need for emergency surgery. They also listed some potential side effects such as blood clots and stroke. If they were looking to freak me out - Mission Accomplished!

On Sunday night, Aug 7 I was feeling fine other than constipated. My last BM was early on Friday. Thinking back to the warnings I was starting to get concerned. Late into the evening I called into Mt Sinai to talk to the on call Oncology Surgeon. We discussed my symptoms and the lack of any vomiting or similar. Can't remember his name but he was great. Very calm and confident. He all but told me to go to relax and verbally patted me on the head, saying to go to bed and have a good sleep.

This might sound a bit condescending but it was exactly what I needed. Later on Monday everything shall we say worked it's self out. Since then I've been fine. More energy than before and re-started daily exercising.

On the movie front we slowed down. Too costly and no more good summer flixs to see. We did make an exception over the weekend for the original Karate Kid. We saw this at the Bell Lightbox downtown TO. If you have not been you should go. Great movie theater and no teenagers talking and texting during the show. One of the neat things for the kids was watching the movie in the Mackenzie Financial theater (Tanya's employer) and playing in the BlackBerry lounge. The only thing I can relate this to is attending the Dofasco Christmas party with my dad. (sorry for losing 97% of you)

The kids loved the movie. Both Cameron and Gavin had seen the remake and didn't really like it. We had to pull rank as Parents to get them out to the original. By the end of the movie both kids were out of their seats and glued to the screen. Cameron said that now he understand how original movies are way better. I'd have to agree.

Most of last week was spent doing chores and prepping for my next chemo treatment. We did have time to take the kids to Wonder Land and a few other smaller day trips.

Today for lunch, went out with the team from work. It was great to see the guys and one gal. It was put together last moment and some people were out of town. Sounds like changes are still going on within RIM. Re-organizing in preparation for new devices and application launches in 2012. Based on the chats today and the quality of the teams I'm confident that RIM has started to turn the ship around. Honestly, I do miss going into work. Some really cool stuff going on and great teams to work with.

Tomorrow I'm staring my 3rd round of chemo. Hope all goes well. Expect I will be sleepy till the end of this week and I need to get to bed soon.

Thanks everyone for your notes, updates and taking the time for lunch. Thanks to Mike for driving an hour each way to meet up for lunch. Also thanks to Kay, Janice and Rebecca for the nice card and notes, it's always a bit of a rush to get an actual card with handwritten comments with the Canada Post mail drop. It's not just for bills and flyers any more.

TX - Stephen

Wednesday, 3 August 2011

Aug 3

Correction, my chemo treatment was today not yesterday. Got mixed up between being on vacation and the Ontario holiday on Monday. 

Everything went well. Based on lack of symptoms they added Avastin to the bi-weekly treatments. Two more treatments until the next catscan and reassessment of my progress. 

I'm still feeling very energetic from the steroids that are part of the chemo treatment. Putting this to good use doing the laundry from our vacation. 

Thanks again for all your support. Your emails and comments are appreciated. 

Monday, 1 August 2011

Aug 1

The Boyd Reunion was great. After a week living in an RV it was great to take a long shower and shave. Flying out of Halifax tomorrow and then my second chemo treatment.

Friday, 29 July 2011

Feeling safer knowing that we have a great chemo nurse from Hamilton staying about 20 meeters away. Also have a Emergency Nurse from Hamilton staying just over a km down the road.

No medical doctors as far as i know but we do have a Phd of Policics on the same farm. So if i do get sick at least I should be able to have some long and interestin conversations.
At the family reunion today we had 125 people playing golf and 477 people registered so far.

Saturday will be strange. Going with my mom and Aunt to visite a group of Nunns who have been praying for me and my family. It should all be fine I just hope i don't start quoting Christopher HutchinsonI'm sure it will all be normal and with in Vatican II guidelines.

Worst case I make my mom and a few other people happy! If I am wrong, it is better to safe by playing all option active.

Returning home on holiday Monday, my next chemo treatment starts Tuesday at 9am. So far l'm feeling fine with no real side effects.


Monday, 25 July 2011

July 25

We all made it safe and sound to Lakevale. Will send some photos tomorrow. Thanks to my Playbook with bridge for internet access and for the photos. 

It is a cool cloudless night and you can see the milkyway in the sky, very cool.

Sunday, 24 July 2011

Update July 24

Sorry for the delay in getting an update out. This past week was very active at time and I needed to focus on resting.

Monday July 18th was a very long day. The Port was installed and I had my first chemo treatment. I'm glad both were done but on the same day is not something that I'd recommend to anyone. If you have the option I'd recommend waiting a week after the port was installed to get your first treatment. 

This is what my port looked like on Monday before chemo. It took most of the week for the bruising to go down and for the cut to start healing. I can still feel the cable running up my neck, still a bit freaked out by this.  The VON nurses were good but we all agreed that the surgery pre-nurse should have saved off more chest hair.  


Having the port installed and chemo on the same day wiped me out for the week. Spent more time sleeping than anything. So far no side effects to the chemo other than a bit of constipation followed by non-constipation. No nausea or anything like that. The challenge was staying awake for more than 4hrs at a time. So I rested a lot and work any chores into smaller chunks. 

The hot weather might have added to this but who knows. The AC was always on all the time so I'm not looking forward to the next power bill. 

Over the past week the kids and I saw a few movies with their summer camp and on our own. From the kids perspective do not bother with Zookeeper (the 5 min add for TGIF was a bit annoying) but both boys really liked Winnie the Pooh  and surprisingly Mr Poppers Penguins  . Jim Cary was good but not over the top. 

Tomorrow we are leaving for the Boyd (my mother's side) Family reunion outside of Antigonish in Lakevale, Nova Scotia. The last one ten years ago had more than 500 people attending from around the world. The facebook page is Descendents of Angus R and Cassie Boyd

We fly out tomorrow and pick up our RV in the afternoon. The boys have been watching the first 4 seasons of Ben 10 and are very excited about sleeping in an RV. I'd tried to explain this is to a few adults who are not familiar with the TV show but explaining a kids show in an adult conversation is harder than one would think. 

We are all looking forward to the week in Lakevale. The fresh air and relaxing setting will be just what we all need. We will be parking the RV behind my parents place on the hill, hopefully we can get a bit of shade. 

The only challenge will be avoiding colds or any other bugs that will be going around. My sister Colleen suggested that I go around with a surgical mask on but that might be a bit too much. I'm sure people will understand why I'll be passing on handshakes, hugs and kisses on the cheek. 

The Tuesday following Civic Holiday Monday is when we get back, but the next day I'm scheduled in for my second chemo treatment on Aug 3rd. Just chemo and no surgery so this will go better. Given my light side effects so far I'm going to ask if they can up the punch on the second treatment. Short term pain is preferred to long term issues. This will be the 2nd of four bi-weekly treatments until the next catscan is done progress is assessed.

Also I need to thank a very supportive neighbour who has arranged for my file to be reviewed by Dr Smith and the Tumor Panel at SunnyBrook. Don't expect anything to change but it's always good to get a second opinion from a well respected panel and this will at least set a base line for any future reviews. 

Want to thank everyone for their support. I've received many emails, calls and cards (they were great and promoted some great conversations with the kids). Apologies if I've not gotten back to you this week. When I've been out of bed I've needed to be focused one getting one or maybe two things done before getting back to sleep. Thanks again to Tanya's work for a second basket, not really needed but very appreciated. No idea who put this together but you seem to know me well, Tanya will need to consult with you on any future presents. 


Don't expect that I'll be able to update the blog next week. I might start doing shorter updates on Google +, let me know if you need an account. Once I get back I'll given an update on the second opinion from Dr Smith, post a few photos and let you all know how things are going. 

Thanks again for your support. 

Thursday, 14 July 2011

July 14

We got the results from the colonoscopy, catscan and blood work yesterday. 

Overall it's not great news. I have 3 tumors. The ones on my liver and large intestines are both 5 cm in size. A third is in my small intestine cavity, it is 12 cm long but narrow. Based on the results it looks like each of tumors has smaller ones with it. Several lymph nodes look larger but hard to tell if they are infected, best to assume they are. At this point they would not be able to get all of the cancer with surgery. 
                    
On a positive side the cancer has not spread to anything else. Nothing in my blood, lungs, bones ect. 

The only potential short-term complication is with a partial blockage in my large intestine. The doctors had a pow-wow today to discuss if they should do surgery first to remove the blockage or proceed with chemo. The question was if they should do the preventative surge's first and delay chemo or just start the chemo early next week as planned. 

Chemo is basically poison. Recovery from any surgery will be slower and riskier if I am on chemo. It is an either or choice. Start with the preventive surgery to avoid a potential blockage (this is not curative and will allow the other cancer to continue to grow) and wait at least six weeks to start treatment or start the chemo on Monday and hope the tumor does not grow any more or even might start to shrink with the chemo treatment. 

The recommendation from the pow-wow was to proceed with the planned chemo for next week. I'll be getting the port early on Monday and my first chemo treatment either late Monday or early Tuesday. This will be just under a month from first detection in Fredericton, faster is always better but I think this was a great turnaround time. 

To be honest the stats are not on my side. The median survival for people with my type of cancer at this stage is two to five years. That being said most people who get this are much older, have other complications and do not have the same overall good health that I have. The goal is to start chemo and see if we can shrink the tumors. If this goes week we can look at surgery as a curative treatment.

I'm also collecting my medical reports to get a second opinion. Dr Smith from Sunnybrook has agreed to review my files. (thanks to a neighbor for setting this up.) I'll try to get everything out to him early next week. I think the recommendation will be the same but you never know. At a minimum it will be good to get confirmation and another set of eyes looking at my files. 

My focus has been on improving my strength in preparation for chemo next week. My weight has stabilized but the daily workouts are improving my cardio and overall strength. I'm also started taking iron pills to bring my red cell count up to normal.

Spending more time with the boys has also been nice. Gone to see a few movies (I thought Super 8 was great!) and a day at Wonderland. With all the bad press about RIM it was nice to see most of the younger crowd had Blackberries. The difficult part was trying to avoid running over them with my wagon in tow. The younger crowd were walking, chatting to the person beside them, BBM'ing and not looking up. 

Wednesday, 13 July 2011

July 13

Sorry no update today, it has been a long day and the boys want to watch Harry Potter 5.

I'll provide an update tomorrow with more info. Overall some good news, some not so good news and a bit of a complication between chemo and some preventative surgery. The doctors are doing a bit of a huddle tomorrow and will have an update.

Tomorrow is another day and the weather should be nice.

Friday, 8 July 2011

July 8 - catching up

Sorry for the gap between posts. Had several people wondering what had happened.

The cat-scan last Thur went well. They did a full body scan which is just the torso. The process took 20min but I needed to show up early to drink some special fluid. Not sure what it was but agreed with another guy in the waiting room who said it needed some ice.

The results of all the testing will be ready today but my medical oncologist get back from vacation on July 11 and I have my first meeting with him on July 13. This is when I find out how good or bad things look and he assigns treatment. My shunt for chemo goes in on July 18 so the soonest things can start is July 19. Not sure how long it will take to get my first treatment. Trying to get this before going down east on vacation but it might be after.

Not much more on the medical front. Other than my doctor has put me on iron pills but my strength is still fine.  My gut still has a numb pain but I've been told that is to be expected.

This past week I have been avoiding anything with a keyboard as much as I can. Focusing on working out, doing stuff around the house and spending time with the kids. Outside of the pain in my gut I'm feeling great. Due to working out I've gained muscle tone and lost some more weight, according to BMI I am just over-weight.

Also spent time with the kids at Ontario Place some parks and biking around. The weather has been great.

The teams from RIM has been very supportive. Lots of notes of support and thoughts. The BBNews team took me out for lunch on Thur. It was nice to catch up. This blog has also been posted on BBNews app. If you have a blackberry you can download the app on your BB or PlayBook.

Outside of trying to keep busy, my next doctors appmt in on July 13th.  I'll let you know how things go that day or the next. Hoping that things will go well!

Wednesday, 29 June 2011

June 28 & 29

Yesterday it was nice to receive flowers from my wife's work, see below. Very unexpected but a  nice thought and they look great. I've never received flowers before but they do brighten up the main floor. Thanks!

Not sure how but Mary-lou from Dr Gryfe's office was able to get me a full catscan for this Thursday. No idea how she was able to pull this off but I'm very appreciative. 

It will take 5 days for the catscan to be analyzed and the report sent. Dr Robert Burkes who is back from vacation on Mon July 11. My appointment with his is on Wed July 13. Don't think I will be able to get in any sooner. Based on what I've read and viewed  he is one of the top guys so I'm more than OK with this time line. 

The other dependency is the portacath on July 18. Once this is done I can start treatment. Just not sure if I will get treatment before going to the family reunion on July 25. Mary-lou thinks no but she is going to try and I'll see what I can do to help as well. 

Want to say thanks to everyone for all your help and support! Some times the small stuff really helps. Received many emails of support. They are all very appreciated and I hope to get back to everyone tonight.Feel free to send notes to my work or home email. 

From the blog I've also learned that a relative traveled to Europe with Dr Burkes back in 75. Also a neighbor
has refereed me into a doctor at Sunnybrook who he knows for a second opinion. Doubt they will find anything different but you never know. 

Outside of following up with health care next steps I've been focusing on exercising and catching up on some paperwork. The exercising is going well, want to beef up before chemo starts. The paper work has been harder to get to but I'm optimistic for next week. 

Tuesday, 28 June 2011

June 27 - Mon

Had the colonoscopy on Monday at 10am ish as planned. They took some samples and the process was fine. Not it is a matter of waiting for the results.

To be honest it did hurt. During the operation I did wake up and it felt very odd and painful. They do not put you out more like a sleepy dream state. It took a good  4 hrs after the operation for the bloating to go down. The whole preparation, process and post symptoms was not pleasant.

My big lesson was how many people have been through the process. I'd say that close to 70% of the people I've talk to about this over the past few days have had at least one colonoscopy over the past few years. Many of them have bi-annual checkups. Just not the sort of thing that you discuss over lunch.

The doctor was Dr Matti Warterman not Dr Robert Burkes, not sure if I had the wrong info or this was a last moment change. Dr Warterman was great, very relaxing and confident. This was going to be one of his last procedures before moving back home to be with his family.

Thanks to Tanya for being persistent with the date for the catscan. We should hear back on Tuesday. We have dates for our next meeting with Dr Robert Burks on July 13 and July 18th for portacath to help with the chemotherapy treatments. Now that we have a base line the goal is to see if we can improve the dates.

In summary, yes the colonoscopy hurt but I've had worse hangovers. With 20/20 hindsight on the pain vs risks I think the guys who have the process every few years are on the right path.

Sunday, 26 June 2011

June 26 - Su

Not much happening. Preparing for colonoscopy on Monday by not eating, taking some meds and drinking seveal litres of water / juice.

The hardest part is stopping the normal habit of eating. Not snacking while making food for the kids or eating what they left on their plate. Not grabbing some left overs when getting more juice from the fridge.

I half expect to find myself accidentally eating a turkey leg while grabbing a side dish of potatoes out of the fridge .... good thing I don't have anything like that.

Real food again on Monday!

June 25 - Sat

Very Busy day

9am - near the end of each school year we have family photos take at Tangerine studio. We have been going to Natalie since Cameron was first born 8 years ago. They do a great job keeping the kids focused and we like going to an owner operated shop.

Forgot to mention that I pulled Gavin out of school on Wed and we both got a haircuts. On Friday I wanted to pull just Cameron out but Gavin saw us so I ended up taking both of them. Cameron is at the age when he is starting to care about his appearance, well at least his hair.

Our normal barbershop had closed early on Friday. On Wed I learned that one of the two brothers who run the place was going in for cancer surgery on Friday, I'll have to follow up with them next week.

10:30am - back at home to feed the kids

11am- back at home, I was heading off to Sobeys and Costco for shopping with Cameron. Tanya took Gavin to a birthday party

1pm - off to Burlington for my sister Colleen's birthday party. Got to see my brother and sisters plus most of their kids. It was great to see everyone was very supportive. Glad the focus of the day was my sisters birthday.

7pm - back home to start taking the medicine in preparation for the colonoscopy. I really didn't want to start taking this without very close access to a washroom.

8pm - made our final booking of RV for the Boyd family reunion at the end of July. We are picking it up in Halifax and driving it to Lakevale , just outside Antigonish Nova Scotia. Cameron and Gavin are looking forward to travelling in the "rust bucket"  for a week. If I need help with the driving I've asked my brothers son Ian to help. We will make it some how.

In some ways a very normal rushed Saturday with the kids but always had health questions in the back of my head.

June 24

Friday was my first day off since getting back. No doctors appointments or running around.

Mary Lou called from Dr Gryfe's office, my colonoscopy is scheduled for Monday June 27 at 10am, they will take a biopsy of my cancer. This will be done by Dr Ron Burkes. Dr Gryfe is out of office on Monday but I think the more people working on this the better.

The catscan is set for the week of June 27 as well but the date won't be set until Monday. Hopefully this will be on the 28th or 29th.

Based on the new blood work, the biopsy and catscan a full diagnosis will be done and treatment will progress. I'm looking forward to this and prepared for any outcome. Ignoring the reality is not going to make anything better. Not knowing and not progressing with treatment is the hardest part for me.

On Monday I also need to follow-up with the hospital in Fred for a CD of my first catscan. The first catscan was just abdominal the next set will include chest.

To be honest, it was very hard to start working on the planned tasks Friday. I stayed in bed till a noon time call from Tanya.

Realized that even though I have cancer that tasks still need to be done. Sometimes taking care of the small things is the most rewarding. Scanned in paper work for the kids summer camp, looked at options for getting e-bills vs canada post and started laundry.

I did think of pulling the kids out of school to go to Cars II but after reading the reviews I didn't think it would be worth fighting the crowds on opening day. We can always go next week. Guessing I will have more time then as well.

Later in the day some people from worked called to offer moral support. It was very nice and very appreciated. Reminded me that I need to let more people know at my work.

Friday, 24 June 2011

June 23

First meeting with Dr Robert Gryfe, Tanya came along to take notes and ask extra questions. Highly recomnd this, more of a team effort. I'm sure to the doctor this becomes routine but to us it's brand new and he does not know what we might already know.

We went in prepared with a list of questions and written history covering everthing from my diet, weight, sleep habits and health over the past 6 months, few weeks and this past week. Maybe it provided a bit too much information but at least he has it.

The first message from the doctor was that this type of cancer is very hard to detect. In the early stages it can only be detected with a colonoscopy, this is not recommended preventative care for men of my age.

The second good news is the type of chemo that he thinks I will be going on does not normally have strong side effects. The treatment is every two weeks for a few hrs. After a few cycles we will re-examine surgery options.

Next steps are for a colonoscopy scheduled for June 27 at 10am. Waiting to hear back on dates for catscan and some other tests.

More news to come but glad we are making progress on diagnosis so we can move to treatment.

June 22

My doctor has been working on getting me into Sunnybrook Hospital, this is one of the top oncology hospitals in North Americal. A lot of oncology research is done, attaracting some of the best doctors from all areas of oncology.

My file was reviewed by Dr HannaDivision Head and Head of Surgical Oncology at Sunnybrook Health Sciences Centre

His recommendation was to proceed with chemotherapy first and then review surgery options after the therapy had started.

The problem was with wait times at Sunnybrook. They have so many urgent cases referred that it might take 3 weeks to start treatment. 


My doctor Sujatha S looked around for faster options. She booked an appmt for the next day (June 23) with Dr Robert Gryfe at Princess Margaret hospital. 

How I found out that I have cancer

Saturday June 18
a.       We had ice cream cake for father’s day, I had two pieces. Soon after eating my stomach and gut were really hurting, I needed to lay down
b.      I put this down to me being lactose intolerant and not having taken enough pills.
c.       I needed to lay down and rest, was wiped out for the rest of the night
Sunday June 19
d.      I was feeling much better; the family went to Ontario Place for the day, no issues. I was pulling a wagon or pushing a stroller most of the day, and went down one tube ride
e.      When we got home my gut pain flaired up, I took a 90 min nap. Most of the time when I take a nap on the weekends it’s for 30 to 45 min so this nap was longer and deeper than I had expected
f.        I was still groggy after the nap but I put this down to being in the sun pulling a wagon for most of the day
Monday June 20th
g.       Packed for a work trip to Fredericton, was Ok but still had more gut pain than was normal
h.      During the day my gut pain got worse and worse, by the time I reached Fredericton I needed help to get up. When I went from sitting to standing it felt like someone had stabbed me in the gut.
i.         After booking in at the hotel I went to a local walk in clinic – concerned I had appendicitis
j.        They sent me for blood work that afternoon at the Fredericton hospital
k.       By 10pm the blood work was back and the doctor at the walk in clinic had booked me in for a Cat scan the next day
l.         Later that night I had a large bowel movement and since then my movements have been fine, small but no problems
Tuesday July 21
m.    I had the Cat scan close to noon, at around 1pm I was told that I have cancer in my intestines and it has spread to my liver
n.      By 3pm I was on a plane back to Toronto
o.      My family doctor, Dr. Sujatha Sundaram was alerted by the Fredericton doctor and she started working on next steps

Note: 
I was very impressed with the technology at the Fredericton hospital, years beyond what we have in Ontario, however the building did not have a big H or anything to label it as a hospital to someone new. I guess all the locals just know. 

The  flight home from Fredricton was the longest fight that I've ever taken. The plan was half full and I had no one sitting beside me. I was only able to talk with Tanya once before leaving. It was just two hrs of time to think all alone.

First Post and Goals

Several goals with this post, in order of importance they are
  • To keep readers current with my status as I move from learning that I have cancer to treatment. 
  • Next a log for myself, who did I meet with when and what tests were done
  • Lastly to keep track of my views of the process, not sure how this will work
Not sure who the readers of this will be. Expect that some family will be active readers along with some friends and family. 

My next few posts will be catching in to this point