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

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!

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

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