Hurry up and Wait

Dr. Hugh Tildesley

On Monday April 20, Deborah, Jim Russell and I met with Dr. Dan Renouf, who is to be my oncologist. I was thankful to see him on short notice and he very professionally went through the various treatment options open.

In essence there were 3, (he did not mention this one), a) do nothing, avoid chemotherapy side effects and hopefully maintain an acceptable quality of life for as long as possible. b) “ chemo lite”, fairly weak agents with few side effects but not very effective and c) “ chemo hi test”, a treatment first published in 2011 in the New England Journal of Medicine, called Folfirinox. I read the manuscript and was initially turned off about the side effects and the impact of my quality of life. He did his best to assure me that they have learned to modify doses to minimize the side effects. The treatment does require a continuous indwelling IV line and with that the risks of sepsis, thrombosis and embolism.

We next discussed the POG study, essentially using tumour tissue, extracting it’s DNA in the hopes of finding which pathways were being affected in the hopes of a tailor made targeted treatment. This requires a second liver biopsy.

I waited a further 10 days before getting the date of the biopsy. This was after considerable back and forth, I was not expecting inefficiencies and the experience served to undermine my trust. I cannot start chemotherapy until the biopsy is completed. This wait has to be contrasted to the immediate booking I received at St. Pauls.

Next week will be important. On Wednesday I will have a repeat CT scan, this to be compared to my original study performed at St Pauls on April 10. It will hopefully give some idea on tumour growth rate. The same day will be the repeat liver biopsy to get tissue for DNA testing, those results will take 4-6 weeks.

I have also elected to have private DNA testing for a considerable cost which will give me results within 7 days. All of this designed to provide focused therapy aimed at the biology of my tumour. From all that I have read it seems as much science as art form.

Take yourself back to that great Ron Howard movie Apollo 13. The astronauts have fired up the controls (never before done in flight), Lovell had to use a slide rule to check the trajectory time and place to fire the re-entry rockets. He used a sextant to accurately estimate their location and to time the start of their burn. In fact it was a little more ingenious as there was debris around the craft making it difficult reliably interpret light sources as actual stars. What was used was the earth’s terminator line, a distinct line that delineates night and day. Simultaneously he controlled the “yaw” of the spacecraft, Swigert controlled the “pitch” and Haise timed the burn. Too long a burn and their angle into the atmosphere is too steep, they go to a fiery death, too short a burn and they “ bounce” of the atmosphere, with no hope of return. Ultimately the craft returns to earth, landing a mere 4 miles from the intended target.

The path of Apollo 13

I too am in uncharted territories, and planning on a safe landing.

The Bandon Boys are in the middle of their tournament. I am enjoying their reports and share some scenes. Included in this year’s group are returning players Paul Batchelor, Senator Mike Kirby (the Senator), Dr. Jim Russell, Ted Williams (Slugger). Rich Hodgson is the Senator’s partner, a great guy with whom we played in Belgium as part of the seniors’ tour at the King Leopold in 2013, and Paul’s replacement for the Pope, maritimer , Steve Ward.

(Keeners can read about Canada’s victory in 2013 at http://tildesleyeurope2013.blogspot.ca/)

The walk up the 3rd fairway at Old Mac, an intimidating drive must clear the hill right of the tree.

Slugger and the Senator seem to have had a falling out

The Senator a wily competitor

The first game is a warm-up at Old Macdonald, my favourite of the 4 courses, but not liked by most because of the constant wind. There were obviously side bets and they were playing on 13. The smiling face of the Senator cleverly disguises a demonic competitive edge. After their drives on the hole his partner Rick and Jim’s partner Slugger were nicely in play, as was the Senator, Jim had scuffed his into the gorse and was fortunate to find his ball. As they marched from the tee the Senator piped up to his partner, “not to worry, I got Jim. “ (Meaning in his mind Jim had no chance!), gamesmanship to the end.

The golf aside, the dinners are always entertaining, last year I am sure the Senator won many of the debates despite being swarmed by the Butler, Tildesley Conservative tag team.

The kids are home, Catherine has decided to stay the summer, and Hamish has 2 months left until he graduates. Although his heart wants to be home he has acceded to my wish that he complete his studies. We will visit, either in Vancouver or LA on a regular basis.

I continue to feel well, just walked 80 mins, 4.5 miles and weight is holding. Repeat blood tests yesterday were improved, however they are a very blunt tool to measure disease activity.