Well it's the end of week 4 and I have done 21 treatments with 14 to go. It was a tough week early on with break through pain etc but on Tuesday Carlye came with me to PMH and we got my medications straightened out. I am now on morphine every 4 hours and things are under control as much as is possible. I have a bit extra that I am willing to sell to help defray parking costs.

It takes about 10+ hours to get the 5 feeds through the tube each day. On days when I have treatments that literally leaves 20-30 minutes twice a day for a 'break'. Given the beautiful weather and the fact my garden, which is mainly perennials, is jumping out of the ground I have been out there every break and any other spare minutes I can find. Evening feed coincides with hockey and or baseball games. How about those Jays!

My youngest grandchild arrived for a visit yesterday, young Timmy from Canmore. Being a very thoughtful child he brought his mother Erika. They are in town until Tuesday.

Been every bit as hard as I expected but the support team at PMH is fantastic and always trying to help me get what I need at the individual level. What works for 1 person doesn't always for another. This week on Wednesday, for example, they kept me after 5 PM because they wanted to check out why my white blood cell count was lower than expected. Did blood work and then put me in with the emergency team to have a feeding while my blood results were being done. The stories that came into that room in an hour made me glad I had my problem and not theirs! I so empathize with all these normal people going through such an abnormal experience with courage, grace and dignity.

Thank you, one more time for all the catch ups, notes, emails, posts, etc. Each one is energizing.

With much warmth,

Peter

Well a long update as much has happened this week. Monday and Tuesday were 'normal' and I felt pretty good. Wednesday I was scheduled for an X-ray to check the tube as it was working very slowly. I'll spare you the OR details. The tube had a loop in it so they pulled it out, which was a bit uncomfortable, but the 'installation' of the new, slightly larger tube was... very uncomfortable. It all happened in a matter of minutes with no anesthetic, freezing, etc. I was out of commission for the rest of the day.

Thursday brought improvement and a big change in protocol. Carlye, my daughter who is an MD, Sandra, my wife, and I had a 5 PM conference call with Dr Sui my chemotherapy oncologist. It was a follow up to our meeting last week with the radiation doctor in which we asked very pointed questions about the chemo and what we gained, and lost, because of it. Dr Sui was amazing. No defensiveness, no agenda, she just listened, answered the questions. In the end she said that I lost very little, if anything by dropping the chemo from the program. Furthermore she made it very clear this would not really effect the outcome. She and John, the radiation oncologist have suggested a slightly different radiation protocol. I will now get radiation treatments twice every Thursday. I still get a total of 35 treatments (15 are done) so my treatment will now finish on May the 11th. This is very good news as the chemo kicked the crap out of me.

Generally things are getting harder each day. Mouth and throat sores make eating a chore and I see why anorexia is such a fear. You just don't want to eat. I weigh 153 at the moment, down from 170. I have started using the cans of Nurtren with the feeding tube. I now have a pump to regulate the speed of the feed through the tube. That is very helpful. Thank goodness for my Blue jays and the Stanley Cup playoffs as each feeding, for 375 calories, takes 2 hours. Our basic focus is on treatments and trying to get 2100 calories into me each day.

Well that's a bit long but now you are up to date. Spring has been amazing in Toronto. Spring flowers are up, the leaves are bursting out... hope is in the air everywhere.

The very best to you all. It's so nice to have you all on board.

With Warmth,

Peter

Hello All,

Well week 2 is done and some welcomed recovery over the weekend. Nausea persisted until about Wednesday which led to much too much weight loss...15 pounds. Managed to level things out since then. Got the feeding tube installed Thursday. Ended up with Dr Ho who invented the procedure years ago and did a very neat job. The nurse in the radiation nurse's station told me I was the 1st she had go through it not needing any pain medication. Had nothing to do with me, the man did a very neat job. Only one draw back. At 5:30 when we tested it with a syringe of water it appeared to be blocked. The surgery folks were long gone and no one wanted to pound on the syringe to see what would happen so we took the cautious approach and waited until 9 am Friday morning to solve the mystery. After radiation at 9 the nurses loaded up a syringe and bingo... it worked fine... so who knows?

Lips were a mess from Thursday on but have cleared up a bit on the weekend. Have used the feeding tube twice to get extra calories in my system. Have very little appetite for anything so eating is a chore and that will only get worse. Glad to have the tube as it takes some of the pressure off. Start week 3 tomorrow with a late radiation at 5:30. Have 4 ticket to the first place Blue Jay home opener tomorrow night but have decided not to attend. Will wait for World Series games. Sandra had knee surgery on Friday, is doing very well, but we need to lay low.

Couldn't have gotten through the week without all the volunteers. Drivers, meal providers, company keepers, errand runners, etc. On Friday what with Sandra going north for surgery and me heading south with the feeding tube issues we needed all the help we so wonderfully received. So many kindness by so many people. Thank you.. all of you.

With warmth to all,

Peter

You should feel very fortunate that I do the updates on the weekend. Had I done it yesterday or any day since Tuesday's chemo the 'Whine' factor would have been much higher! Nausea, even when the medication prevents 'upheavals' is very very unpleasant. The meds also introduce some other 'fog' between me and the world...more than normal that is.

The 'lump' on the side of my neck has shrunken considerably which led to much inner speculation on my part as to the need for such radical, long term treatment. Psychologically I am trying, of course, to find an escape hatch out of this ordeal. A Thursday meeting with John, radiologist/oncologist makes it clear that we stay the course.

There have been many adjustments to my radiation mask in an attempt to get me into the exact position needed for treatment. In the end it all comes down to shims, wedges, and the odd piece of padding stuck here or there. Robin, our hockey trainer, would have been ideally suited to help them out in that regard.

Exciting week ahead. Daily radiation with a big 'feeding tube' meeting on Tuesday and the installation of said tube on Thursday. It goes in through the stomach wall and into the small intestine. Not stitched in but rather taped on the outside. Sandra is pushing for a larger tube so we can actually put nutrition into me as opposed to their version of 'ensure'. That many be a bit of a battle. We'll see.

Hope you all have a wonderful Easter weekend. Have the 20 month old twins coming over Sunday to liven things up. Will update you all next weekend. Once again...thanks for all the support!