Update May 26 - prep for Push for Your Tush

Hey, we are the top team for the Burlington Push for Your Tush, Thanks again for all your help!!! http://bit.ly/ZnbjVM

Just like fighting cancer, no one does this on their own.

                      

My Update

This event is a bit of a celebration. Two years ago I was diagnosed with stage 4 colon cancer. At the time I was told the average survival was two year. We are at that point and to modify Mr. Twain “the statistical projections of my death have been greatly exaggerated! ”

Overall my health is fine but still have some secondary cancer growths to be addressed. They are all about 1cm or less. On bi-weekly chemo until we can determine what they are and what to do about them. Getting world class treatment from the team at Mt Sinai, they are focused on beating Colorectal Cancer, the second biggest cancer killer in Canada.

Run Update    

Matt will be running in Vancouver with his daughter and new born son. Colleen and Maggie will be doing the 5K with Cameron, Gavin and myself in Burlington. Owen will be running the 10K. Expect he will finish before we are at the half way mark, something about Owen being tall, thin and a teenager. Plus he still has all his hair … some things might change over time?

Karen, Sandra and Jacquelyn will also be joining us in Burlington. We just need to get Gerard out for the 5K walk and that will be all my brothers and sisters. Feel free to encourage Gerard if you can.

In Toronto Mark Nagy will be running with his son Sebastian. Susan and Megan Roche will be joining in the run as well. From St Marguerite-D’Youville, the kids school. Several of the staff have generously donated and Gavin’s teacher M. O'Shaughnessy might be running at well. She is trying to encourage other teachers to participate. So far only the staff has stepped up. Not trying to start a competition between the school staff and the teachers but just saying …..

About Colon Cancer Canada

The last time I did a fundraising event like this was over 20 years ago. The internet was something called a fax machine. BTW – faxes are still used by most doctors … nothing like spending a billion plus on e-Heath (sigh…stopping before I start ranting) . The funds raised by Colon Cancer Canada will be put to good use. Overhead is very small and funds are used mainly for direct patient support, investment in Canadian research with groups that we are close to or pushing awareness for early screening.

Still looking for support for our team; would really appreciate if you could sponsor or join at Push for Your Tush

Any support for this or the  Anne Murray Charity Golf Classic Anne Murray Charity Golf Classic is very appreciated.

Sorry for the long note. For those who have followed my blog I have a tendency to for longer updates.

TX – Stephen

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 12^th, 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 5^th 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  11^th, 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. 

Jan 11 - Update

As part of the expected clean-up after my major surgery in April. On Friday Jan 11 I went in to have some growths removed from the surface of my right lung. Using the weeding a garden analogy this was expected, just not so soon.  

Every doctor said they expect this is just part of the colon cancer spread, this is a good thing. Just need some clean up from the primary now that it is gone. Very small risk of this being a new type of cancer, a very small but a real risk all the same. Better to be sure then assume. The biopsy results will be ready in a few weeks.

Sorry for not communicating this ahead of time. At first the news did put me in a bit of a funk since it scuttled my return to work plans. Also I was just getting my head around the fact that I was better … not sure I want to relive that. In some ways harder than dealing with being terminal.

The delay with return to work hit me hard as well. It was my talisman for getting better. Also for someone who makes his living planning complex launches, it was hard to deal with this setback on the day I was looking for final approval from a number of doctors. Sort of like being left at the altar.

On an odd but good note. My case is still outside the normal parameters. Several of the Fellows told me they stayed up late to go over ALL of my past CT Scans to look for any other issues. Most CT files have about 100 images. My impression is they want to find something so they can be a Star Fellow for a day. One of them went over the process of flipping between slides to see what changed. Not something that I would want to do for more than 5 min. Glad that at least two talented people have done this and found nothing new.

Below are some updates sent by Tanya before the surgery and one from me today.

Hope everyone is having a great new year!

From: Stephen Dunn
Sent: Monday, January 14, 2013 4:45 PM

Update from Stephen,

Correction: I was in TG for less than 35 hrs not 60, I blame the drugs for my poor math

On Saturday Sunday at 7pm I was released from Toronto General (TG). Not that I was shooting for a record but it was under 35 60 hrs from first cut to discharge. Overall the experience at TG was great. The medical team was world class and the nurses were great.

The only thing I miss from Buffalo was the daily foot massages “to ensure blood flow”. I guess this is a perk in the world’s most expensive medical system. I asked the nurses at TG but they wouldn’t go for it.

After surgery patience go first to Critical Care for a few hrs, they have with massive support. Then off to a Step Down Unit with four patience in a room along with two nurses, normally for a day or less. Finally to a standard room.  I spent almost all my recovery time in a Step Down unit. This was great. Got personal care and meet some great families.

Asked the surgeon’s Fellow if I should be worried about 2 vs. 3 tumors. He said no, they were all on the CT scan. It was just that no one knew what they were until they went in. The growths were small and in one location. This is good; they only had to remove a small patch of lung close to the surface. He said it will all come down to the pathology. My next visit is on Feb 5^th. Will know more then. My focus this week is on recovery.

TX - Stephen

From: Tanya Dunn
Sent: Friday, January 11, 2013 11:36 AM
Subject: Re: Update on Stephen's surgery today....

Good news! I just met with the surgeon, and the surgery went well and Stephen is now in the recovery room. Unfortunately, they found a third tumour in his right lung, but they were all removed, and he ended up with only 3 incisions, 2 covered with Steri-strips and the other one with only 2 stitches, not a big scar like last time. The 3 tumours are being sent to pathology and we should have the results in 3 weeks as to whether this is lung cancer or still spread from the original colon cancer. He had no major complications and lost only 10 ccs of blood. The surgeon said that he will spend the night in MICU and could be released as soon as Sunday if the chest tube is able to come out by then.

Thanks again to everyone for their kind thoughts and wishes. It is greatly appreciated.

Tanya

From: Tanya Dunn
Sent: Friday, January 11, 2013 11:13 AM
Subject: Re: Update on Stephen's surgery today....

Hello everyone,
Stephen went into surgery right on schedule at 9 am this morning, in good spirits.
No news as of yet, but not expecting any update until at least 11 am. We were told that he will spend tonight in the MICU (a less intense Intensive Care) and should be moved into a room on the 10th floor for tomorrow. I was told I will be able to see him briefly once he is out of recovery.
That's all I have to update as of now.
Thanks,
Tanya

Sept 11 - Update

Sorry for the delay in updating. In short, things have been going very well since the surgery.

In many ways it’s easier dealing with bad news vs. good news. With bad news you can put together a battle plan, discuss strategy with experts from various disciplines and put specific milestones in place to measure progress (positive or negative). 

In a bit more detail, my health has been great, my results are early NED (no evidence of disease), the term NED is hard to nail down and evolves over time. Both my surgeon and oncologist feel my cancer is in remission and they can find no evidence of the disease. This does not mean that all my cancer is gone but it's the best of all possible options.  

This is very rare for cancer patients in stage 4. My feeling is this is due to the great care from medical teams and Ministry staff. Having spent some time on the US side I can honestly say that we should be very happy with our medical care in Canada. Some of the comments from doctors in the US were that I was getting better medical treatment than most of their patients since the Ministry of Health was easier to deal with than any insurance company. Understand that my experience is only one out of many but it is the most important one to me.

Since getting out of surgery at the beginning of July I’ve had one CTScan performed and it did not show any cancer. My next CTScan is at the end of October, hoping all will go well but not much I can do about it. Just need to wait…. This is the hard part, no plan of attack or anything like that, I just need to stay healthy and focus on recovery. 

The only medical set back so far is a blood clot in an artery near my bellybutton. This is normal and is better to have in an artery than vein. To treat this I am on daily injections of Lovenox. I can honestly say that out of all the health care professional that I’ve had, I am the worst. Every day I start with self-injecting a prepacked siring of 150mg of the drug. Like most people I’m not very good at self injections, some days might do more harm than good. On Thur I go in my next check up on this and hope that all is going well.

The only other drug that I’m on is Imodium. This is an anti-diarrheal drug. Currently, I’m over the max daily dosage for this but trying to slowly cut down. This is normal reaction, after having a third of my large intestine and 3 feet of my small intestine were taken out. The best description that I’ve found relates to work. Think of when a department was eliminated, no matter how dysfunctional it might have been. It takes time for the remaining departments to sort out how they will function without the missing department. Over time things will get better, some days better than others ;-)

Overall my health is getting better, the normal recovery period is six months and I understand why this is. Most days are fine but after a very active weekend I spent most of Monday sleeping. My doctor also feels that I need to focus on recovery for now as well.

That being said, I’m also looking forward to returning to work at RIM at some point. From what I understand they are moving in the right direction, have addressed many internal issues and the new product looks very cool. First I’ll need to get the results from my next CTScan in late October and see what review progress again with my doctor. It is great to be thinking about going back to work again after a long period of focusing on staying alive.

Sorry again for the delay in updating my blog. When things are not going well I always update my blog. It is a way to get my thoughts in order and in most cases it results in someone reaching out to help. When things are going well or if I’m focusing on getting a plan together it is harder to updated, either not much to say or just enjoying life.

Please do feel free to reach out. Calls, emails or letters are very welcome. I will say that dropping by without calling in advance is still a risk. A few good friends have done this out of the kindness of their hearts and it has never worked out. So do call, send notes or emails. At the moment I can be flexible with my time, can travel with no problems and in relatively good health.

…. I always intend to do a short update and it always evolves into a medical lesson with project status report, oh well.

Thanks again,

Stephen

Sunday June 2nd - Update

Substituting in for Stephen on some post-surgery updates:

Stephen received his first visitors (who were not his parents or yours truly) in the hospital post-surgery today. His sister Sandra and her husband Steve came down for a visit. Sounds like from Stephen that he really enjoyed the time spent with them, and Sandra phoned afterwards to let me know that Stephen looked great post-surgery in her opinion. Apparently they got the added treat of viewing his incision (lucky them!). Stephen was able to get up and walk around the nurse's station 11 times by the time Sandra left.

Stephen also got a visit from Dr. Kane, who let him know that everything looks on track, and that they will begin to let him have some food on Day 6 or Day 7, which will get his bowels working again, a step that will require monitoring in the hospital, as we were told in advance.

The boys were both invited today to a Boxing birthday party for Gavin's good friend Thomas, so Stephen phoned them in the morning, and was able to talk to them over the speaker phone to "coach" them before the event.

Stephen's sister Karen is planning a visit on Monday, June 4th and his brother Gerard is planning a visit on Thursday, June 7th at this point.

Signing off,

Tanya

Surgery + the first few days following....

WARNING: Blogger substitute, as it's me, Tanya substituting in for Stephen give the update that currently he is unable to give. I have tried to put together most of the emails that were sent out over the course of Stephen's surgery and the first few days afterwards while at Roswell Park Cancer Institute in Buffalo N.Y., so hear it goes....

They had some delays the morning of the surgery at the hospital, and were only able to make Stephen's initial incision at 10:30 am Wednesday morning (planned for 9 am to 9:30 am).  They first reviewed the cancer in the peritoneum and it was in such a way that they could proceed. Then they went onto the liver, where they needed to have an ultrasound performed in the operating room. This was done, and it was then determined that it was okay to proceed based on location and size of the liver tumors, the ultrasound confirmed that the 2 liver tumors were as the doctor had expected them to be and no bigger, or not to close to the main hepatic artery.

I got the news from Dr. Kane's nurse, Anne, at around noon Wednesday that they had a green light to proceed, and that the liver specialist, would begin with removing the 2 liver tumors, then Dr. Kane would work on removing his entire right colon, then resecting the left colon in 2 sections, and then final application of heated chemotherapy drugs for 2 hours, and then seal Stephen back up and send him to I.C.U. Anne (the nurse) said she would give me another update in a couple of hours, but that Stephen was holding up very well in the Operating Room.
 
We found out at around 3 pm Wednesday afternoon that the liver specialist had just finished with removing the 2 tumors from Stephen's liver and he was just about to have the colon work done and then the heated chemotherapy.

By around 8 pm on Wednesday evening, Stephen was in the final 2 to 3 hours of surgery. All the visible  tumors in the peritoneum, liver, and colon are removed and he was about to  receive the application of the heated chemotherapy drugs. The nurse informed me  that Stephen held up extremely well throughout the surgery all day  so far with no issues.

Final update of the night, although it was already May 31st, so technically it was the first update of Thursday morning.

I had gotten off the phone with Stephen's doctor, Dr. Kane, just at 1:00 am. He sounded quite tired. Stephen was out of surgery as of 12:30 am and moved into I.C.U. and remained sedated with the breathing tube in, as we had been told in advance would be the likely scenario.

As Dr. Kane stated, everything went very well, and they were able to get all the visible tumors out, of the peritoneum, liver and colon as well as apply heated chemotherapy. Stephen did not require a blood transfusion during surgery, as he lost only the equivalent of "2 cans of coke" of blood (according to Dr. Kane's analogy) and all of his levels and counts remained fine, and remain okay once he was moved to I.C.U. He said that I.C.U. will be pumping Stephen full of IV fluids overnight, and keep a close monitor on him.

Dr. Kane mentioned that all of the tumors were concentrated and there appeared to be little spread of the disease in small pockets throughout his body, which is a good sign going forwarded. One of the liver tumors was a bit tricky, which took some extra time by the liver specialist' as it was located close to an artery within the liver. He also mentioned that it didn't appear that any of the tumors had started to grow again during the interim period between stopping chemotherapy and Wednesday's surgery, which is also a good sign.

I thanked Dr. Kane extensively, to which he responded, very humbly, "don't thank me yet, as this is just step 1, thank me once I return Stephen back to your family healthy". I cannot but feel that this is the first step to that outcome, and without Dr. Kane's willingness to take Stephen on as a patient, we would not even be at this first step.

Stephen was moved to a room in  I.M.C.U, on Thursday, which I found out stands for Intermediate Care Unit, a level less critical than I.C.U. which is good, but still more closely monitored than a regular hospital room. The nurse, Sue, informed me that he will remain there all day Thursday and possibly all day Friday, until Dr. Kane can see him and determine that he is ready to move to a regular hospital room.

Stephen is in and out of sleep, but can talk, and says that his throat hurts quite a bit. He can self-medicate himself with a combo of Morphine and Novocain, every 10 minutes. All his levels are good, he was just a bit low on his magnesium count this morning, so they added that to his IV. He is doing really well, from everyone's perspective.

By Thursday after dinner,  Stephen was sitting up in a reclining chair beside the bed. He was talking, and still going in and out of sleep. The nurse came over to tell us that based on all of his readings he will definitely be moved to a regular hospital room tomorrow, and that he should know that the nurse on tomorrow's day shift will actually make him get up and walk, even if just for a couple of steps, so to be prepared. The tough love begins tomorrow he was informed. He seemed in good spirits and was watching CNN Anderson Cooper 360 on the TV in his room.

 Stephen spent most of the day Friday still in and out of sleep. He did however get moved a single regular hospital room today, and walked the length of a long corridor to get himself there. He will remain in this private room, on the 7th Floor West, room 7406 until he is discharged in 2 weeks to go back home to Toronto. Hard to believe, actually. He also got permission to have 1/4 glass of ice chips every 4 hours which is great. All his levels and output is very good. I will spend the rest of this evening with him in his room, and then check on him tomorrow morning at around 7 am, and then drive back home to Toronto. I won't see him again until next weekend, unless obviously something goes wrong.

For those who plan to come to see Stephen, visiting hours are from 11 am to 8:30 pm, 7 days a week, and they recommend 2 visitors at a time, although most nurses haven't been picky about this with me. He cannot eat or drink anything, and currently has trouble to focus, so really isn't reading or watching TV very much. He is able to sit up and really enjoys you talking to him to pass the time, as he cannot really talk because his throat is so sore. They gave him special spray for his throat today to help with the pain. I spent time this afternoon reading to him all the emails he received, as well as the emails I sent, and he seemed to like that quite a bit.

Thanks again for all the kind thoughts and prayers. Greatly appreciated.

Tanya

May 29 pre-surgery

So, it’s been a seven months since my last update. In many ways not much has changed. The major decision was whether to go for surgery in North Carolina or not. Glad that I waited. During this time I’ve stayed on Chemo and it has been working well and looked into other surgery options.

Turns out the Ontario Ministry of Health works with Dr John Kane III out of Roswell Park Cancer hospital in Buffalo. Dr Kane comes very highly recommended by my doctors at Mt Sinai as well as the team from Sunnybrook. This is also covered by OHIP, which is very nice. Over the past four months I’ve been meeting with Dr Kane to discuss surgery options. Things have been going very well. My tumors have been getting smaller and Dr Kane has been getting more confident on surgery.

Doing surgery on stage four cancer patients is new. The goal is to get as much as possible out and to reset the clock. Since the tumors have spread they know that getting everything with surgery is not possible. Some cancer cells will still be in the blood stream or other organs. As Dr Kane described, the best analogy is weeding a garden. The initial surgery will take everything that he can see. After this I’ll go back on chemo to catch some stuff. If anything starts to grow they will go in again with smaller surgery to take it out. This is a new direction, just over two years, so they don’t have much in the way of stats but so far things look good.
                                                                                                                   
On May 30th (tomorrow) I go in for surgery. They will do a smaller incision first to look at my liver. If it is just  the two or max three growths on the liver they will continue; if not they will sew me back up. Dr Kane puts the chances of this at 10%. The next potential road block is the spread of cancer in my small intestine. If there are too many small growths this will also be a point where he stops the plans and sews me back up. He feels the chances of either case is small but still a real chance that they may occur.
                                       
After the liver and bowel work is completed then onto the next phase of the surgery. If all goes well I will get 120 min of HiPEC. This will give Dr Kane a bit of a break during the 12hrs surgery. Expectations for post-surgery are that I’ll be in the hospital for two weeks. Personally I’m a huge suck and not looking forward to any of this at all but the upsides are worth it.

Dr Kane has been clear that I will not be disease free after this, small chance that I would be but it would be like winning the lottery twice. He is going to address everything that he can see (bowls, liver, peritoneum). Once I’ve recovered from the operation I’ll need to go back on chemo and have regular CT scans. If they see something else they can hopefully take it out with a minor operation.

As for my health I’m doing fine, other than gaining more weight back. The boys and I are going to Taekwondo five or more times a week. Three weeks ago, we all got our Yellow belts and I can for the first time since grade school that I can touch my toes without bending my legs. Personally I’m more proud of the touching my toes than the Yellow Belt, not a small task for man of my age. Hopefully this will help with a faster recovery and lower risks during surgery.

Over the past week I’ve spent a lot of time with the boys. Went to Wonder Land a few times and took them out of school to see The Avengers and MIB III. It will be good for them to have a few weeks of school without dad pulling them out for fun. Had my last blowout on Friday. Went to the Munk Debates with Mike Stubbs who I first meet in grade nine. After we went to the Rex and a few other bars, didn’t make it home till late. After several request from the east coast, on Sunday we all went to church and I was blessed by the priest.

Tanya will be providing short updates over the next two weeks. My plan is to start more regular updates again in a few weeks. Thank you all for your support, prayers and kind wishes.

Later
Stephen