More Progress

Dr. Hugh Tildesley

A number of positive notes. The swelling in my legs continues to dissipate and I have abandoned the long support stockings. They kept falling down and I took the hint to stop wearing them when one of our wealthy Dunbar neighbours tried to give me a handout when observing the sorry state of my leggings.

I am back walking 2.5 miles with no discomfort. I recently returned to wearing shorts and I am reminded by a Mickey McDowell comment when he last saw me in shorts; “ Is that you Hughie? Why are you riding that Ostrich!”. Mickey is of course a golfing colleague and played hockey on the National Team for Father Bauer. His stories are legendary and best left in the locker room.

My second round of poisons went well, there is just the boredom of sitting for 4 hours while being infused. Day 5 seems to be the fatigue day, so sleep is the priority but very few other side effects. I have decided to continue for 4 cycles before having a repeat CT hoping to get a better estimate of response. This should be done near the end of July. I still do not have data on the genetic tests that were done, these are potentially important pending my reaction to the chemo. 

I am motivating myself by visualizing improvements, future activities and of course going to Happy Gilmore’s “Happy Place”.

Happy Gilmore

Elon Musk

Steve Jobs

 I am reading recreationally with my spare time, having just finished Walter Isaacsons review of computer evolution; call the Innovators, and most recently a biography on Elon Musk. It is intriguing how many focused visionaries have been successful in changing our world. The Jobs, Gates and Musk’s of the world demonstrated superb intellect coupled with unwavering focus. Not to mention their abilities to recognize superb engineers. The Musk accomplishments are staggering; made in America rocket engines, the Tesla and solar energy.

Bill Gates

My children were brought up tree huggers. I have a suburban parked outside which has served me well for 18 years. I have argued that since I have not replaced it the carbon footprint for the vehicle is actually shrinking. It is difficult to debate belief with logic.

After reading the Musk book I further investigated the attributes of the Tesla. Let’s see, “ car of the year”, 2 years in a row, 2014 and 2015. The ability to send software updates via the net prevents the car from being obsolete. The weight of the car rests with its center of gravity, thus maneuverability is optimized. Catherine and I test drove it last week, there are no switches or knobs, it’s a computer on wheels.It is of course totally electric.

I have mentioned that my bucket list has been modified, distilling what I want to do, down to what I can do.

I take delivery of the car in mid-August

 

 

The kids now see me differently.

Hamish is in town for another 10 days, it has been a joy having him home. Catherine is training for a 10 K run and I am helping out as best I can with advice, it is so hard to get runners to rest! Her training is going well and she is very disciplined. Donovan makes regular stops home for visits and meals and his career continues to flourish.

Hamish and Cat getting fit

Wednesday dinners at the club are a fixture. Men’s night is always entertaining with great company and a selection of excellent vintages. My meals have to be smaller, and small glasses of wine are quite complimentary. I have revised my chemo schedule and expect to be back playing on Wednesdays. Again, another activity to look forward to.

The Importance of Fathers’ Day and Anniversaries

Dr. Hugh Tildesley

This past week I have felt better, the legs are behaving, I worked 3 ½ days at the office, and spirits remain strong. I am again cautiously trying to increase my walking without paying the price of recurring swelling. Today I managed 2.25 miles non-stop. 

Leg length support stocking in disaray

The swelling has dissipated so much that my support hose falls down. The feeling is similar to your socks migrating to your toes when wearing Billy boots.

I think I’m pregnant ;I have specific craves as to what I want to eat and drink, and these change almost on a daily basis. My liquid intake has graduated from tonic water, soda water and has settled to an “ Arnold Palmer”. This is a combination of lemon aid and ice tea. Deborah was horrified at the sugar content of the commercially available concoction and found the ingredients to eliminate this issue and we have a homemade formula. It is indiscernible from the commercial product (naturally 10% of the cost). By mid morning I am usually convinced as to what we should have for dinner, we buy fresh ingredients and it has worked out perfectly. I always thought we would shop and eat in such a manner, just that we would be living abroad while doing so. Like a pregnant lady I pick at my food and often feel full before I should. I do not have a due date.

Linked with eating is my weight. Now that the fluid from my right leg has mobilized my weight decreased 3 pounds, this is huge motivation to stay on the eating program. We are looking into various stimulants in this regard.

Every week there are positives:

Hamish returned home for a 3-week stay on Thursday. I am on a need to know basis regarding his career development but remain confident that he is well positioned for the next stage. Fortunately his visa status is secure for the next year and this means less hassles as he travels to and fro LA. The US has so many immigration rules and policies. In Hamish’s case, since he has completed a degree (Masters in Fine Arts (screenwriting)), he is given a work visa for 1 year to work in a job related to his training. After 1 year he submits letters of support for an extended work visa, the clock started on graduation day.

The Photo she is holding from our wedding

Anniversary Photo

Deborah and I celebrated our thirty -third wedding anniversary on June 19. Very low key, dinner out at our local specialty restaurant, La Buca, followed by some port on our newly completed patio.

The last 6 weeks our back yard has been a construction zone. As many of you know I thrive on continuity and the disruption affected me. The project had been planned since November and was executed beautifully. Deborah spent hours consulting with Diane Bridges (wife of Greg, a longstanding TWA member), and the crew was attentive to all details of the plan. The result is spectacular. The foliage calming and with our flawless weather a great place to hang out. These photos do it some justice.

 The putting green did not make it through the first set of drawings. This could change with Deborah's next trip out of town





Father’s Day will be a different celebration. I have enough stuff and so the kids were asked to bring a wrapped gift to themselves, chosen by them, given to them. My message to them was that the best gift for me was to give.

Hamish will do a roast beef on the spit, he has a newly invented marinade, I will do my Yorkshire pudding, and the ladies will prepare the veggies. I am much more comfortable eating at home as if forever reason my appetite strays it is no big deal.

I met with Dr. Renaud’s replacement on Friday; my blood work is in order to proceed with round 2 of chemo on Monday. My list of questions were dealt with efficiently and we had a very good rapport. I continue to try to streamline my visits, and again lobbied for phone or Internet follow-up.

Interestingly blood work is designed to pick up dangerously low levels of white cells, so when is the best time to test for this? The fact is that serum ½ lives of these drugs have incredibly large variations, so unless you estimate an individual patient’s excretion and physiologic effect it is all a guess, thus being too demanding on the timing of blood testing without this data is a bit of a stretch. Like many things in medicine we tend to do what has worked in the past.

Progress, Promise and Pumps

Dr. Hugh Tildesley

The biggest frustration over the last 2 weeks has been the post-thrombotic swelling of my left leg. The combination of rest, elevation and a leg length compressive stocking has returned my limb to its usual shape. I was missing it.

Functionality is returning, walked a mile last night with little discomfort or swelling.

On Monday I met with my oncologist and on Tuesday started on Chemo. My nurse was very professional with explanations of the various compounds with no holds barred description of side effects. These explanations always ended with either call the help line or go to the ER!

As I entered the chemo room, brightly lit with the never-ending sunlight we have enjoyed for the last month, my eyes went to the IV pole with multiple pumps and bags. I was reminded of the numerous Herman images, which had propensity for medical scenes.

We are doing everything we can for him

The hook up to my porto-cath went well, thankfully no leaks with infusion over 2 hours of oxaliplatin, followed by irinotecan over 90 minutes.

I was then attached to a continuous infusion of fluorouracil to be taken over the next 46 hours.

Portable infuser, filled

Infuser emptied

This infusion device is quite clever, powered by and elastic membrane (very condom like), with flow in part determined by body temperature as the flow meter is tapped close to the porto-cath entry. On the left my infuser filled, on the right a cartoon of an empty device.As the photos show it is quite bulky and I have been supplied with a man purse to tote this thing around.Over 46 hours the balloon contracts pushing the solution via tubing into the porto-cath. The process is completed when the balloon is totally deflated. Deborah and I will need to take a course to detach the thing; I will naturally include this time for CME credits.

For the next 3 days I was supplied with various prescriptions, which worked well to control any symptoms of nausea. My energy level lapsed at the end of the week, however the nightly broadcasts of the hockey playoffs, NBA playoffs and women’s soccer easily justified my lounging around.

Edible delights of celebration at Hamish's Apartment

There are highs in every week. Hamish graduated from UCLA with his Masters in Fine Arts in screen writing. A tremendous accomplishment and he now enters a highly competitive business with the training to succeed.

A second high was learning that my GAP student, Nelson Chow was accepted into medical school at the University of Western Ontario. This program was set up in 1997 so that various clinical projects could be completed and in the meantime students could get exposure medical research. The goal of the program was to get these young, bright energetic people on their desired career path. Most wanted medical school but some followed their dreams of occupational health, PhD programs, nursing and health care policy. Along the way they have all published, attended meetings, learned the in’s and out’s of ethics committees and dealt with rejections and re-writes on their projects.

With Nelson’s success we are still batting a 1000.!

Deborah continues to support me at every possible level. I cannot imagine this process without her. On average I think I am pretty well organized, but her classical nurses training does not let me miss a pill!

Sorry gang no rant this week. Is that a good sign, maybe not?

On the way back from the agency this week we witnessed 2 MVA’s on 2 consecutive days. No one was hurt but the adrenal rush eased my fatigue for a few hours!

I think rants are good for me.

Next week is an off week, no poisons, we shall see how the energy level is. I have office and golf time booked, and look forward to getting back on the course with the usual collection of bandits.

Ups, Downs and In

Dr. Hugh Tildesley

Much of the week was spent with my right leg elevated as I wrestled with one limb being twice the size of the other. The problem of my post thrombotic syndrome has persisted. Fortunately it is not painful but the swelling limited my non-stop walking to 1 ½ blocks. I played golf with a cart on Monday (June 1), mainly because the course was set up exactly the same as it had been for the final round of the PC Financial Open. The course was spectacular, the pins in places we had never seen before and the company as usual irreverent. Predictably swelling in the leg was triggered, thus my usual Wednesday game was compromised.

Brother in law Ted returned to Toronto on Monday, my brother Dave was in town for this past week. Catching up, showing support and staying connected. He is a stock analyst by training and had an impressive knowledge of my disease and an understanding of the many unproven therapies available.

On Tuesday Deborah and I went to an introduction on chemotherapy at the Cancer Agency. The material was well presented and organized, in essence discussing all the side effects of the commonly used drugs. As a doc, no big deal, I know most of this stuff. As a layman I can only guess it scared the hell out of most people.

Since we were already at the agency I thought I would kill 2 birds with 1 stone: A.) Get my blood work done, B) get printouts of recent tests, which had not been sent to me.

A). Blood work is a fairly simple thing, you have a requisition, some tests are ticked off, you go to a lab, get the blood drawn and the results are generated and sent to the recipients marked on the requisition.

I presented by piece of paper to the technician who frowned and said,” I am sorry, it is marked “outside lab “on the requisition, we can not do the test. I replied that, “ It is a perfectly bonafide document, please process it, I am here and I have no intention of going to another lab”. He countered with some bureaucratic blather to which I responded, leaning over the counter,” Please accommodate my request; please remember I am the customer here! “ Without looking up he asked me to take a seat. The blood was drawn, the technician having a much more mature sense of customer service than her colleague.

B). I next stopped at the clinical reception desk asking to speak to my oncologist’s secretary. I asked if she could photocopy 4 pages of reports that I was missing. Her response was: “ I don’t do that.” My reply was an incredulous, “What?” She repeated the mantra. I was told I had to go to the fourth floor, sign some forms and wait. I could only reflect on what my office does,( copy the documents and hand them to the patient!), and how this process needlessly created an impediment and frustration. In BC the law is that patients own their own records, in this case, I was made to feel they were doing me some kind of favour for me to get my property. Outrageous.

The lady on the 4^th floor was pleasant, asked me to fill out a 1-page form and printed the 4 pages I needed. I will again ask Dr. Renouf (as I have done in the past), for my tests to be copied to me.

And so endeth this week’s rant

Friday was catheter insertion day. I am to go on 4 different drugs for treatment and this will require easy and repeatable access to my venous system. The technology has improved greatly over the years, and I thought I would share with you some of the details to remove some of the mystery of the procedure.

Diagram of a Poto Cath

After the usual delays I was taken into the procedure room and was reassured to see a familiar face. Betty, one of the attending nurses, had been an official at many swim meets in Richmond when Donovan was competing and I was coaching. It was nice to be distracted, talking about old times and the many characters we knew. The operation is minor but of course full sterile technique is used. Dr. Dan Liu, entered the room with a smile, explained the procedure, and assured me he would be doing it himself. Within 20 minutes it was all over. A small incision allowed access for the catheter to be inserted into the major vein draining into the heart (superior venocava), and a “port”, to be tunneled under the skin a few inches away. The port allows easy and repeat access to a major vein, minimizing trauma and chances of infection.

All that shows is a little bump under the skin

Past Presidents: 2014

Last night was the Past President’s dinner. I had the distinct privilege of being the president of Point Grey Golf Club last year, and I was honored to receive a photo from the 2014 dinner and my president’s pin. The dinner is a semi formal affair although we all wear our president’s jacket; club tie and many wore the “ Point Grey socks”, which was my gift to last year’s participants.

Dave Tunnicliffe, this year’s president was the host and according to tradition gave a brief state of the union address. He then offered to take questions.

Roger Moores is one of the funniest men I know. Whenever I think I have the latest joke he has heard it! It seems he never forgets a pun, a gift that fills me with envy.

I will never forget a Sunday morning after our usual round. He had finished his breakfast, looked around, took a big sigh and stated, “ I guess I’ll go home and find out what is wrong with me today!” and promptly left to gales of laughter.

Tunnicliffe had brought up the topic of the new golf range (still in planning stages); he had explained in some detail that improvements to the range had scored highest on the recent member survey.

Moores’ hand immediately went up. “ Only one question, where is the range?” He is renowned for never practicing; it took a while for the group to get the joke.

Brad Pinnell is the general manager/CEO of the club. I worked very closely with him last year and learned how hard working, professional, and passionate he is about our club. He is not really a type A personality, but like me a “ malignant type B”, that’s code for a disguised type A.

As we were all finishing our deserts he cruised by Tunnicliffe and whispered, “ Say goodnight Dave”. President Tunnicliffe dutiful rose to end the evening. 

To me it was a "Laugh In "moment.

Dan Rowan and Dick Martin

  

The shows always ended with:

Dan Rowan: Say goodnight Dick

Dick Martin: Goodnight Dick

A Week of Adaptation

Dr. Hugh Tildesley

The day following the Masters dinner my right leg started to swell above the knee. This had happened before and had abated with some prolonged elevation. This was very worrisome as I thought that this part of the DVT (deep venous clot) was over. Unfortunately this was not to be. The swelling persisted.

This had unfortunate ramifications. A trip to Victoria with the original TWA group had to be cancelled. A huge disappointment as everyone had made schedule changes and the Pope, Gorgeous and Aydin had been very coordinated in planning. Hope reigns eternal that this bothersome condition will allow a rebook.

Rubber Gloves to help position the stocking

Dually Compressed

What is exactly going on with the leg anyway? Simply put, blood is trying to get back to my major vein, bypassing the clots, which formed a few months ago. Those clots are resorbing, but in the process, the valves in the veins have been damaged so blood is pooling. My treatment is elevation, and knee length support stockings. These things are fitted, and actually I need help from Deborah to put the damn things on. In fact she needs to put rubber gloves on to get a proper grip. Those of you who know Deborah are aware there are no shortages of such equipment, given her penchant for cleanliness.

It was 10:30 pm, 1:30 am in Toronto. My brother in law Ted, from Toronto was on the line. “ Hughie, I am coming out, landing Thursday or Friday, no return plane ticket. “   

It was all settled, I looked forward to his visit and knew our shared passion for the playoffs and golf would be well fed. As mentioned my leg precluded playing upon his arrival but slugger was able to guide him around Point Grey as a replacement host. The course was idyllic as the PF Financial Open was to start in a few days.

My days have been filled with uplifting messages, by phone, email and cards. The sentiments are heartfelt, and very much appreciated. I cannot reply to many of them and hope that my profound thanks here will suffice.

Hamish flies back every 2 weeks or so. He has been great both with his emotional and cooking support. When diagnosed I put on fast track things I wanted to deal with. One of them was the damned barbeque!

We finished a substantial renovation 6 years ago; part of it was getting gas out to the deck for a new barbeque. I must say this renovation went spectacularly, it was within 10% of budget and in retrospect very few things would we have changed. We researched the replacement-cooking unit, and followed the best advice. This thing turned out to be a dud! The lighting mechanism broke within months, and in spite of a great cover, each month generated more rust than a battleship. Lighting the damn thing risked a slipped disk, as only a member of the Cirque du Soleil could position the lighter properly. Any laziness in this regard would lead to an uncontrolled defoliating facial, eyebrow replacements not included!

You guessed it; we bought a replacement barbeque, spit and all. Hamish has become the expert cooking on the spit. He loves doing it, we love his creations.

Catherine has committed to staying home. She chose to stay the summer to support Deborah and me. This has not been without some hardship on her part. She had to cancel her trip to Africa and quite reasonably used my medical condition as the reason for her cancellation. 

Don’t mess with Catherine! She spent a total of 6.5 hours on the phone with the fraudsters from Expedia! (Keeping track of hours is the first class given in law school). Only after mentioning there would be a legal action taken did the stalling stop.A full reimbursement followed. She will be a great advocate for her clients. The lesson:

DO NOT USE EXPEDIA!

Donovan makes a point of hooking up for dinner a few times per week. Conversation often reflects on wonderful shared moments in the past. With Ted in town, these memories go back 30 years. The advantages of being blind is that a whole bunch of cerebral cortex in the occipital lobes is suddenly available. His storage capacity for events and dates past is prodigious. No one argues when he pronounces when an historical event occurred.

This is a true Hazard! Chateau Whistler Course

We spent 4 days in Whistler last week, Ted and I driving up together in the sports car, top down, Beach Boys playing. My leg improved enough for 3 rounds in spectacular scenery.I pulled my tee shot on 3, Ted refused to go look for the ball!

The family came up (save Hamish who is finishing his studies at UCLA). Drew and Alice Thompson lent us their beautiful home and we enjoyed great weather, 
 mediocre golf and wonderful family meals. 

Donovan has never seen a mike he doesn't like

HT and DT at Whistler FM

In 2007 Donovan and I became partners in a radio station in Whistler. After my heart attack in 1009 we sold our share. Rob Wilson became the owner operator and his tenaciousness has put an excellent product on air. He and Donovan can talk the business for hours together.

Ted in his glory at The Open

Ted and I returned to watch the final round of the PC Financial open at Point Grey, sitting on the deck as VIPs with the Butlers and many Point Grey friends. The 4-way playoff was a fitting end to a wonderful afternoon.

It is clear that sometimes my rambling does not provide answers to common questions so here are some Q and A’s:

When are you starting treatment?

This Friday I will have an indwelling catheter put into a major vein to allow access for therapy. The poisons start early next week.

What will your therapy be?

Initially it will be a combination called folfirinox; this will be continued until we get the DNA testing from the tumour studies. My best chance is to have genetic guided therapy based on the markers within the tumour.

How will decide whether the therapy is working

Two ways. First if there is objective evidence of improvement based on CT imaging. Second is a subjective call, mine. Simply put are the side effects affecting my quality of life in an inacceptable fashion.

How is the Bucket list doing?

The bucket list is made up of dreams. On it were things like an Alaskan cruise, going through the Panama Canal, a safari, etc, etc.

This has been modified to a list of “Wants”. What do I really want to do? Going on a cruise for 7 days, with 1000 people I do not know. Not exactly a "want."

Thus the dreams are being converted to “wants”, and ultimately modified to “what can do. “

It’s been about 2 months since the diagnosis, a lot has changed, but I remain in good spirits and at peace.

Thanks to all for your support!