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

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

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 

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!

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

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. 

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.