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