Saturday, 9 March 2013

Update March 9

Not sure how to start I’ll just do a core dump of the past 8 weeks:
1.       Recovery from January operation went well
2.       CT results caused a lot of anxiety, summary of comments from the same scans
a.       Radiologist: Iliac lymph nodes are growing and assumed to be cancer from the primary plus many small dark spots in lungs but not sure if this is left over from Lung surgery
b.      Oncologist: cancer is aggressively growing in lungs plus growth in lymph nodes
c.       Lung Surgeon: spots in lungs are small clots and staples left over from surgery, no evidence of cancer in lungs
d.      Others – almost everyone else said listen to the Lung Surgeon
e.      Next CT scan in 12 weeks, will know more then
3.       Restarted chemo to address growing Iliac lymph nodes
a.       Staying on first line treatment, Folfiri and Avastin, had good results last time
b.      Started on Feb 12th, going ever two weeks
c.       Will have third treatment on March 12th 
d.      Have standard side effects but overall tolerating this better than average
e.      Next steps depend on response to chemo
4.       Developed a hernia on my right chest, just below rib cage
a.       Surgeon at Shouldice, said to just lose weight and exercise, surgery too risky
b.      Connective tissue pulled away, not uncommon after surgery, chemo and exercise
5.       Meet with Dietitian at Mt Sinai, great session, working on digestion and gas issues
6.       Looking at getting a pool installed this summer, whole family is looking forward to this
7.       Looking to return to work
a.       Paper work is in progress, moving slowly through the system
b.      Will be starting slow and working around chemo treatments
c.       Expect many things have changed at BlackBerry since June 2011

So that catches us up with the facts. The major stress has been the alternative ways of interpreting my last CT scan. We had known about the potential for Iliac lymph nodes for some time. The good news is they are close to where the primary was and it has taken them a long time to grow. The bad news is this might indicate cancer growth somewhere else, no evidence of that yet.

On Feb 5th at 10 am met with my Oncologist. He was reading the spots of an aggressive growth across both lungs. A few LONG hrs later I meet with my Lung Surgeon; he looked at the same scans and reports and said it was “A-typical” of the results of recent surgery. The spots were small blood clots, staple marks and similar. He said my lungs were fine and to not worry about it.
On one hand I trust my Oncologist; he is normally on the very cautious side, grounded in science and has many years of experience. However my cancer has never grown like this. It has always been slower growth and tends to grow in clumps not like sown seeds. Supporting this Lung Surgeon had just been working on my lungs and he knows what to expect a week after lung surgery.

So, this is where I’m glad that I’ve built an extensive network of health professionals. To be honest I was in a bit of a daze for the next few days and can’t remember the details of conversation. The main message I got was to proceed with treatment but also a strong trend to agree with the lung surgeon. In either case the treatment is the same.

On Feb  11th, meet with a surgeon at the Shouldice Hospital, they specialize in just hernia treatment. Can’t say enough good things about them. Based on doing some research, they are one of the top clinics for hernias in the world. Sort of clinic you expect to see in the USA.  My hernia is large but at only a 2% risk of needing surgery. Just need to avoid getting hit in the stomach. So much for Taekwondo, won’t be getting past my yellow belt for now.

Recommendation was to lose weight and exercise. I am 5lb from my final goal and trying to do exercises daily at home. Started wearing a support as well but as I lose weight and strengthen the muscles any pain is going to be manageable. Need to avoid any large meals in one sitting as well. Oh well, not like I have never had a large meal in the past. Overall probably a good practice to get into.

In terms of tolerating chemo, so far so good. My last cycle I had 19 treatments. At the start I was fine, almost no side effects at all. By the end I was ready to stop, was just staying sick and not recovering between treatments. Now I am feeling the side effects of chemo but they are mostly gone in 3 or 4 days. After my last session on a Tuesday I was out for a burger and beer with friends on Thursday, it took me a bit to eat the whole thing but I was talking a lot as well.

As for digestion, I do not recommend gong on chemo after having 1/3 of your large intestine and 3 feet of your small intestine removed. My system is more sensitive now and going on chemo just …. Saying it is thrown off balance does not do it justice. More like chemo takes my digestive system down a back alley, roughs it up a bit, throws it to the ground then gives it a few kicks with steel toed boots. Or, that is what it feels like for the first few days.

Starting to volunteer at the Colorectal Cancer Association of Canada (CCAC). Starting slow but looking to talk as a patient advocate down the road.  Also working with some colon cancer awareness groups and had a video of an interview and will be talking at an internal product launch for a pharmacy company later in March. My goal is to help promote awareness of symptoms and treatment. With early detection people have a high potential for a cure, the challenge is getting people in for early detection.

Returning to work is a huge goal. Both mentally and physically it will be good to have a normal routine and something else to work on. The approval process has been slow but I can honestly say that everyone that I’ve talked to at BlackBerry and SunLife has had my best interest in mind. It is hard to feel like a number when people start telling you about their personal experiences with loved ones and cancer.

OK that is my short update for now. Please do stay in touch. 

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