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!