Back in Time and the TWA April 6 , 2009

Dr. Hugh Tildesley

It was a crisply hit 7 iron, 148 yards from the pin , on the par 3 17^th at Point Grey. The drew ever so slightly from right to left, landed short and to the right of the pin, 2 tantalizing hops and rolled with purpose until disappearing into the hole.

The roar was Augusta like.

This started the TWA (Tildesley Wine Account). Eight of us had agreed that anyone in the group who scored an ace would automatically trigger a $200.00 donation towards wine at men’s night. It so happened this was the inaugural men’s night of 2009.

That’s when the politics started. The Pope, a banker by profession and in charge of a large loan portfolio smelled too much risk. He could not trust that there would be any price controls with Aydin in the group, and there were obvious volume issues with the rest.

As luck would have it a few days later Aydin, Butler and I were part of a group attending the 2009 Masters. We witnessed at close hand the winning stroke by Cabrera, to end his playoff with Kenny Perry. We also stayed to hear his thank you speech in Spanish, translated to the audience, quite an emotional time for him and we were glad to be part of it.

That night we stayed at Reynold’s Plantation, Butler and I celebrated with an Argentinian Malbec. This led to using the TWA funds to celebrate the country of origin of each major winner.

Some of you may know that each Master’s week starts with the Champions dinner, with last year’s champion responsible for the menu. Tiger after his first win served cheeseburgers! Mike Weir more sophisticated: Elk, wild boar, Arctic char, Canadian beer. This was the solution to the “Papal Problem”. We have held such dinners since 2009 with a black tie celebration each November with couples attending. The Point Grey staff has been amazing in preparing dishes with recipes from all over the world.

" Gorgeous Seslija in Texas Formal"

The Papal Head even too large for a Texas hat

This past week (May 21), we celebrated young Jordan Spieth, the 2015 Masters winner. He is a Texan thus we started with Texas pretzels and beer on the deck, beef brisket, slow cooked for 16 hours, Texan potatoes, chili and vegetables. Rhubarb pie a la mode and Kentucky bourbon to close. The dishes had to be accompanied by American wines, Cannonball Chardonnay and Timberland cabernet-sauvignon. The evening ended as the sun set with all gathered around the fire pit.

Sun Setting over the fire pit

Donald S. Cherry

I reflect on such moments. We often hear of Don Cherry, still stuck in the 70’s as if he still coaches the Bruins. He frequently mentions Stan Jonathan, that fearless fireplug who defended his mates, never questioning his role nor showing fear or hesitation. Cherry often says “ it’s like ‘tis. When yeah gots a guy like Jonatan, everybody plays bigger!"

Stan Jonathan

I play bigger with these guys at my back.

The Busiest Week of my Year

Dr. Hugh Tildesley

This past week I looked forward to with some trepidation. It is by far my busiest week of the year. This year even more so as I met with Dan Renouf, my oncologist to discuss future strategy on Monday to start the week.

On Wednesday the week prior, I had had a repeat CT scan to compare with the images from a month prior, and later the same day a repeat biopsy of my liver for fresh tissue for genomic testing in the hopes of getting targeted therapy.

The CT scan was on time, the staff incredibly friendly and efficient. After the scan, respecting the fact I am an MD, they escorted me to see Dr. Chan who had my images from the previous study.I introduced myself and he was a little taken back that I was both an MD and the “patient”. He was very deliberate going over the comparative images.

In every disease there something I call the footprint. Is it deep, i.e. well established and likely to cause early and significant mischief, or light, less aggressive and likely to follow a longer and indolent course. In my disease with already significant metastatic deposits, there was a chance it could explode, making control difficult and unlikely. His interpretation left me room for optimism. There was no change in the original pancreatic lesion, the large liver met had grown slightly, the other satellite lesions little or no growth. I was not exploding.

The next test was a repeat liver biopsy. Under ultrasound guidance, repeated passes are made into the liver lesions to acquire tissue. Dr. Martin was very thorough in his explanation, even though I am a Doc and had had the procedure 4 weeks prior he described what he was going to do, his complication rate and how long he would be observing prior to my release. He was superb, slight discomfort with freezing but little else. He made 8 passes and with each one commented on how satisfied he was with the sample. It was a relief to have Deborah and Hamish on hand for support and company.

I see humour everywhere. The porter was a cheerful, whistling chap. He had a lot of miles on him. He took me back to my university days, when there was always a patron sitting alone in the corner of the tavern nursing a Molson’s 24. (Quebec remember). These guys generally sat alone but if you started up a conversation they would engage and stay engaged.

This guy took great pride in his driving skills. His turning technique made me feel that I was in astronaut training!

Astronaut training

The next porter had a different demeanor; same spin and sprint but a talker/philosopher clearly just visiting the planet.

I was lying on the gurney awaiting an ultrasound to determine if I could go home. He starting quizzing Hamish.

The conversation went like this:

Porter: What is the most precious time?

Hamish: Right now

Porter: No, the past is depression, the future is anxiety, so what is the most precious time?

Hamish: I don’t know

Porter: The most precious time is that spent with Hamish

The porter starts to walk towards the elevator

Hamish: I think there is a chemical leak in there

Porter: Maybe so, but it still takes us up and down. It’s a miracle

Hamish: It’s an elevator

A few days later I had further blood testing and the genetic tests I had done previously were back. Dr. Renouf reviewed all of this information. Both Deborah and Jim Russell were at the meeting, and at the conclusion I felt fully informed and ready to make a decision. I mused for 24 hours and have decided we will start chemo “ heavy” in early June. I have continued to feel well with my only concern being weight loss of about 5 pounds. I did not believe the scale, as if anything my belt was getting tighter!

First Round at Bandon

I have faced these situations in life before. Most notably when Butler and I had finished our opening tournament round. We both had played poorly and were dead last! Those who know us are aware that we live for competition. We looked towards one another to find out the next day’s strategy, and simultaneously said: “fire the caddy!” We thrived under the new guy, we nicknamed Psychologist Phil as he appropriately nurtured our emotions not our flawed swings. The last day of the 4 day tournament we were the medalists and finished just out of the money.

Your Fired

The new scale reads my previous weight; the old scale has been dealt with appropriately.

The rest of the week went fine. Wednesday was my usual golf game followed the annual Greek Gold plate dinner. Each year I remember my late friend and colleague and buy a couple of tables. There is a reverse draw for a luxury car, and 2 years ago we won $5K, which funded a trip to Pebble Beach. This year we were out with still 100 tickets on the board, still a great night.

Vlahos Lecturer: Dr. Dan Drucker

The next day we entertained Dr. Dan Drucker at Point Grey. A world-class scientist with a passion for golf. We partnered and relieved Russell and Butler of some blue bills. A small world as Jim Russell was an attending when Dan was a resident; both have had stellar scientific careers.

Dr. Bill Vlahos

That evening was the Bill Vlahos lecture presented by Dan, followed by dinner. Bill’s three sons and Father in law George Chronopoulos were the usual guests of honor. Bill would have been extremely proud of his boys!

The week finished of with our Diabetes Directors Seminar. Another successful meeting that has been going for 27 years.

My office hours will be adjusted as I will travel prior to starting chemo with side effects which are hard to predict.

The Most Frequently asked Questions

How are you feeling?

Surprisingly well. My appetite is in tact and I am maintaining my weight. I am able to walk the golf course and the dog, both distances of 5 miles. My energy level in the office is fine.

What will happen to your practice?

There are 3 main things that I do professionally. First, there is the consulting practice in endocrinology. This represents 30 years of work. I have a very capable colleague, Dr. Monika Pawlowska, who will be taking over on July 1 st. I have reserved one day a week to keep my options open. I had intended to retire in 2017, so the dates have been moved up.

Another part of what I do is the Western Canadian Insulin Pump Center. This operates under ERS Endocrine Research Society. This will continue to function, and Dr. Adam White has agreed to take over my duties as secretary.

Another activity is clinical research and this will continue. Dr. White and Dr. Pawlowska will be taking over this operation.

All of these developments have been finalized over the last week, and I am greatly relieved that there will be an orderly transition.

How long have you got?

I really do not know, most estimates are in months not years. I will be choosing a therapy that maximizes quality of life not longevity.

Why don’t you phone me back?

Nothing personal, I have been really busy keeping up with reading about my options, tests, appointments etc.

Also, the kids have rallied and quality time has been spent as a family. I cannot tell you how comforting this has been for me.

Are you on EI?

No, just my pension, tag day to be announced.

Do the animals know?

Rhea

Avril

The cats wouldn’t listen. Ginn is imprinted on Deborah and is showing me affection as much as she is able.

 

Ginn: The Russian Judge gave her 9.5 for foot position

What are the kids up to?

Catherine, Donovan and Hamish

Donovan is nicely settled into his new apartment and his insurance career is thriving.

Hamish has about a month to go to complete his Screenwriting masters at UCLA, he is doing very well. He will commute north for long weekend visits every couple of weeks.

Catherine had been selected to participate in a legal internship in Namibia, but withdrew from the program in favour of spending the summer in Vancouver.She is a great help at many levels.

What makes you laugh?

The Phone

Well, just yesterday I was at the cancer agency, waiting for the elevator. You guessed it; I glanced over towards “ the phone”. There was a lady staring at the thing the way a cat stares down a canary. She never moved, 45 seconds later, the elevator came, she was motionless. I was not sure whether to call the ER.

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.

The Last Week of April

Dr. Hugh Tildesley

Just finished a smooth 18 holes, 41/41 for 82. Butler and I smoked the Pope (Brian McGuire) and Russell. (Dr. Jim) We had a net 65 they were even par at 72. Plus Butler birdied the 18 th for the automatic extra $5.00.

Me and the Pope, note his winning grin

These matches are not without theatre. On 14 Russell and I were the same distance from the hole, I volunteered “ good for good”, meaning we both conceded our puts. Before the Pope could interject the deal was done, unfortunately it was not totally equitable as my put was for par, his for bogey. The Pope was duly irritated. Before he  earned his papal nick name he was known as “bitchy competitive”, shortened of course to BC. Fortunately the concession made no difference, we relented to his continuous sighing and gave him a 6 footer to tie!

So very therapeutic. irrelevant in the greater scheme of things.

A huge issue for me to walk 5 miles irrespective of the score. I treasure the time I spend with these guys, I think they know it.

A typical Bandon View

Butler and I were scheduled to leave on April 27^th to Bandon Dunes. It is the annual Amateurgolf.com 2 man best ball. It would have been my eighth year and a highlight of my golf schedule.

The Club House at Bandon

Bandon Dunes is one of my favorite destinations in the world. The brainchild of Mike Kaiser, it has legitimately grown to be recognized as the premiere golf destination in North America. It is a pure example of " build it and they will come". The 4 golf courses are unique, provide stunning vistas and of course are challenging by design and the ever-changing weather conditions. A good read on the building of Bandon is a very informative book, " Dream Golf”, by Stephen Goodwin.

I am off this week and feel less pressured in attending to many of the tasks that lie ahead.

Over the weekend we told our children of the diagnosis. Donovan was over for brunch and in fact did not seem very surprised, there were hints I was not my self and he picked up on every one of them. He volunteered that on our return from Paris at the end of February he found that I was sounding “ older”, very astute.

Hamish had had a suspicion; his good friend Jeremy Chan is a few months away from graduating from Vanderbilt Medical School. He immediately was concerned about he blood clot story but did not tell Hamish directly his suspicions.

Catherine was relaxing after completing her exams. A horrible time to hear this sort of news, but there is no optimal time. Although I had said nothing the boys pitched in, Hamish within an hour had arranged to fly from LA to Edmonton and drive to Vancouver with Catherine. What a relief . I did not want her driving alone. Donovan has as well offered but 2 drivers made the most sense.

This weekend all will be home. The support is immeasurable, thankfully I am feeling well and this past week maintained my weight.

The Second Week

Dr. Hugh Tildesley

An ominous date, April 13 was my liver biopsy. Again Dr. Patrick Vos was in charge and the procedure proceeded with minimal discomfort and the closest suspected metastatic lesion was biopsied. I was comforted to have Deborah and my friend and colleague Dr. Jim Russell to wait the 90 minutes with me to be sure there were no complications. Now all that was left to do was to hurry up and wait.

Two days later Heather Leitch asked to see me as her last patient, the reason was obvious and in essence a formality. She confirmed what we all suspected, the liver biopsy consistent with undifferentiated adenocarcinoma, consistent with a pancreatic primary. In essence, I had a severe disease, not operable, and with treatment options that could prolong life for an undetermined amount of time. She had made an urgent appointment for me to see Dr. Melosky at the cancer agency for the next day. This was to get me into the “system” as soon as possible.

The Phone

The following morning I made my way to the agency, Deborah was to meet me there later after an errand. I checked in at the front desk, they had my name and I was directed across the lobby to the phone. “ What phone I asked incredulously?” The phone over there as the clerk waved her hand. All I could see was another reception area and the usual office stuff, and yes there was a phone there. “ You mean that black phone which is part of that work area?”  She confirmed my description.

Don Adams as Maxwell Smart

I sauntered over to “the phone”, and stood nonchalantly awaiting it to ring. I imagined I was Maxwell Smart, trying to get into see the Chief from that hilarious show “Get Smart”. The phone rang and it was all I could do to not say…” Is that you chief”?

In fact it was a lady from the record department really only interested in my name and birthday. Forms were dutifully filled out Barb Melosky was very kind, she listened to my initial reluctance to follow conventional therapy and my desire to pursue genetically targeted therapy. Within minutes she had arranged an appointment for the following Monday, some blood tests and a repeat CT scan in early May to assess the aggressiveness of the tumour. My dilemma is that apart from weight loss I felt good. My legs were improving each day on the new anticoagulant, my energy level normal. I really did not want to interrupt this without compelling reasons.

The Start Of a Different Journey

A different Journey

April 24, 2015

Dr. Hugh Tildesley

For the faithful followers, you know these blogs are usually about travel. Written in part to inform friends as to our activities and also to serve as a historical document to aid failing memories as to what did we really do. This blog will have a different theme.

 

The last few weeks have been a whirlwind of tests, disturbing results and the realization that challenges have arisen, which will be stressful on all those around me. I have been diagnosed with metastatic pancreatic cancer. That is a cancer in the tail of the pancreas that has spread to the liver. Due to it’s stage, therapeutic options are limited, cure unlikely. I will share with you this journey, and as usual it is all about me. Merely writing about my predicament serves as a catharsis, but I want to share with friends as to how I am doing. Thus if someone asks and I do not feel like providing a long-winded, technical explanation, I will be able to merely say..... “ read my blog”.

Haystack Mountain Cannon Beach OR

My goal is to remain informative, up beat and when ever possible see the funny side.

The First week:

We returned from a marvelous road trip to LA on Good Friday (April 3, 2015. We had traveled down the Oregon and California coasts, cut across to the Napa valley and made our way to Torrance.In fact we visited the vineyard in which we were married.

Freemark Abbey, the sight of our marriage

Deborah and me, the site of our marriage in the background

Deborah has a sister Judy and brother Dan living there and we stayed a few nights with Judy and Connie before moving to our Manhattan Beach apartment. The two weeks was one big family reunion, and a chance to share with our son Hamish, his UCLA experience and meet many of his friends. He is in last year of screen writing and in our in depth talks I was so impressed with his knowledge and how undaunted he is to competing in a very tough industry. In addition Catherine, our daughter in first year law , flew down for a long weekend, a wonderful gathering !

Hamish, me, Deborah and Catherine

Our drive home was more direct than the meandering trip down, unfortunately the intermittent swelling and discomfort in my legs, which had started a few weeks earlier, was not getting better.

By Easter Monday I was very concerned that I was not improving and ordered some blood tests including a screening test for blood clots. This came back markedly positive. It shouldn’t have as I was on blood thinners. Developing clots on blood thinners is a bad omen and is cancer until proven otherwise. 

My colleague Adam White organized the definitive Doppler studies and I contacted Heather Leitch, a St. Pauls hematologist, to get advise re anticoagulation. She advised switching to Dalteparin, an injectable, low molecular weight heparin. I picked up the prescription and $1200.00 later took home a batch of prefilled syringes.

Let me rant here. The picture of the syringe looks benign enough but the needle is large, dull and too long for a sub cutaneous (SQ) injection. Compare the dimensions with a simple insulin syringe. This device is like something out of a diabetes museum describing injection techniques from the 1920’s! 

The needle on the right is 25% longer and twice as wide. Not shown is the dullness factor, the needle on the left is a simple insulin syringe ( from this century), this photo says it all. Shame on the manufacturer!

The next day lower limb ultrasound documented extensive clotting in both legs. Next was a CT of the chest, abdomen and pelvis, I was fitted in on a Friday afternoon and being a physician was able to sit with the radiologist, Pattrick Vos and see the scan “ hot off the press”. It documented a small tumour on the tail of the pancreas and multiple spots on the liver. The diagnosis was all but sealed, primary pancreatic cancer with significant spread to the liver.

I felt for Pattrick, we are colleagues, but not friends. He usually describes images that culmonate in a typed report. It is then up to the ordering physician to give the news to the patient. It was just the two of us, digesting bad news. To his credit he immediately got Dr. Leitch on the phone and we had a brief chat. He then organized the liver biopsy for the first thing the following Monday, this was done in minutes. I was very thankful for his genuine concern and professionalism.

My worst fears were now documented.