Season's greetings!

Christmas 2014

Another year comes to a close.  How quickly time flies, ever faster it seems!

We have had a wonderful year, all in all.  We started out the year in New Zealand.  There, we had lots of fun working and relaxing on Nigel’s sister’s orchard and travelling to the Eastern Cape as well as the Abel Tasman National Park together.

In February, Nigel travelled with Thelma to Indonesia, where they enjoyed Bali and Lombok, such different cultures in neighbouring islands!  Then they spent two weeks in the Philippines, mostly in the Visayas, where the highlight for Nigel was diving in very warm waters with a whale shark!

We enjoyed the longest and most perfect summer we have ever seen on the West Coast.  Day after day we awoke to perfect blue skies and pleasant temperatures.  In June, Thelma visited us here and was able to catch Geoff run a half marathon in Vancouver.  He has taken up the sport and is becoming a contender!  How did he get to be 38?!  Taryn is enjoying her job as a school secretary and has become a confident, creative potter.

In October, we travelled east to Ontario and Quebec, visiting Nigel’s brother in Capreol and viewing the gorgeous Eastern fall colours for the first time.  We also went to Philadelphia to confer again with the world expert on ocular melanoma.  Nigel’s health news is unbelievably good really and you can catch up on the details by checking out his blog.  On  December 5 he flies to meet Thelma in Hawaii and then on to New Zealand where Louise will join them on the last day of the year.

We consider ourselves very lucky to arrive with joy and hope at the end of another year.  We wish friends and family a lovely holiday season and best wishes for a healthy and happy 2015.  

Peace and love to all,

Nigel & Louise

Well

Well, well, well. That is how I am.

Very late last night, I reached home. On Monday, I met Dr. Sato, the foremost authority on ocular melanoma, at Thomas Jefferson University in Philadelphia. I met him for the first time a year ago in person but he has been helping me regularly with advice for two years now.

He assured me that I seem to have ended up in the best possible situation for a person with this dreadful disease. I have twice undergone immunotherapy with ipilimumab and have had radiation to several aggressive tumours. Together, these treatments have got me to a sweet spot where my immune system seems to be able to keep the cancer in check. For several months now, there has been very little change. Dr. Sato has growing confidence that this will be an extended period of wellness and I need to get on with my life. Very few people get to this extraordinary moment. There is no way of knowing how long this balance can be sustained. Scanning will continue at regular intervals.

And so, here I am in an unexpected and novel place. I do not need further treatment at the moment. My body is strong and my mind is catching up! It will be an enormous but exciting challenge to live each day as if it is the last, but with lots of confidence that tomorrow will come!

Thank you to all who have walked this path with me.  It has never been lonely. Peace and love, Nigel

Peace

This has been a painful week if you live in Canada. The nation's peace has been disturbed in a high profile way by the death of two soldiers, one off duty, the other, gun not loaded, guarding our War Memorial on Parliament Hill in Ottawa. What evil leads to this destruction of human life? What, or whose, cause is served? What good can possibly come of it?

It is not possible to think that the religion of Islam, a religion of peace, can be responsible. In both cases, it appears as if distressed young men, living failed lives at so many levels, sought in one desperate final act to attract some, any, attention and depart in a blaze of some sort.

Yesterday, quite by coincidence, we were driving along Highway 401, from the historic city of Kingston to the airport in Toronto. We became aware, as time progressed, that all of the overpasses were slowly filling with a mass of humanity, dressed often in red, quietly holding the Canadian flag. By the time we got close to Toronto, the crowds were thick, but quiet, reflective and dignified. Thousands had gone out of their way, stood for hours, determined to find a way to be part of a large and beautiful statement that might sound like this: we know that a horrible thing has happened in our midst. We seek only to return to peace. We are united in saying we don't hate anyone,we will help anyone, and we want to live in peace. This horror will pass sooner if we stick together. It cannot define who we are. Let's just stand together a while here as we wait for the funeral cortège to pass. Things will get better. We are strong and resilient. Peace will be reestablished.

Solo

It's fall marathon time! As the temperatures dwindle and the leaves colour up, with training program duly completed, the body and mind turn to completing the distance - 26 miles and 385 yards.

With all of my running friends, we usually group up to go to attractive destinations close by or, occasionally, far away. Race Day brings huge excitement - family,  friends and many enthusiastic strangers all along the course to cheer us on, bands, water and aid stations, posters, crazy costumes, never a dull moment as we push our bodies to achieve the finishing time we have set our heart on. Since October 2003, my first marathon, here in Victoria, I have enjoyed running in the cooler fall temperatures (between 9 and 13 degrees) in close to perfect conditions, very little rain, hopefully little or no wind, a beautiful, scenic, gently undulating course.

This year, everything was in place for the usual running celebration. However, my son is working hard at enjoying running and becoming a serious runner. I really want to see him in his half marathon on Sunday. I can't participate in the marathon and support him at the same time!

Last Saturday, I found a way to solve the problem.  On a gray, drizzly day I set out on my own to run the distance. I wondered what it would be like to run without any support. How important are the distractions, the fun, the hoopla, the excitement of race day?  What is it like to stop at all the red lights and patiently wait for them to change to green?! Is it discouraging to run mile after a mile with no one else involved? 

The answer is in. If you love the distance, the challenge, the ritual, running all on your own is a perfect experience - very different from what we are used to. It was a perfect solo marathon for the fall of 2014!

Happy thanksgiving to all! Peace and love. Nigel

Hooray!

This is a wonderful day! I picked up the report on my abdominal MRI and learned that my cancer has not changed from June to October. This is the first time since the beginning of the journey that there are no signs of progression. The wayward growth is still for now. My body and the disease have agreed on a temporary truce. Things do not seem to be getting worse. I am very thankful for this bright window.

However, the work continues. I advocate every day for help. I travel to Philadelphia later this month to consult with Dr. Takami Sato again. Once I know what he recommends I do next, I will start to organize to move in that direction.

A trip out east also gives me the opportunity for a visit with my youngest brother and his family in Ontario and also to enjoy the extraordinary colour that marks the end of summer. We will have time, and leave sufficient flexibility in our travel plans, to move to where the colour is brightest!

But before we go, we celebrate Thanksgiving on October 13, thirty nine years to the day from my landing in Vancouver! I have always loved the weekend when I remember my good luck in arriving in such a beautiful part of the world in 1975! The food is fabulous and the company special! My son will be in town to run an incredible half marathon and I will be there to see him fly to the finish line!     Peace and love to all!

End of summer

The most perfect summer ever continues. Each day dawns clear and warm. There is rain in the forecast for the end of the week so we shall see if summer can make a final comeback after that!

I have done the medical rounds once again in preparation for diagnostics of spine and liver later this month. I have done everything in my power to access nivolumab as soon as the Extended Access Program rolls out at Lion's Gate Hospital in North Vancouver. Dr. Sasha was able to confirm last week that he will be the first to start and I hope I will be at the front of his line!

October will be a month of reckoning for me. It will become clear how well my body is doing at keeping my implacable enemy at bay and I will have the genome study available in the hope that therapeutic targets can be identified.

I am going through a period of feeling really well physically, being able to exercise and enjoying life. I mean that in a deep, not a trite, way. What a privilege it is for me to have become human and to fall in love with the world in all its complexity. If only we could become more familiar every day with the mystery that envelops us. It is so easy and commonplace to be unaware. So often, we see older people completely wrapped up in their diminishing enjoyment of life. We have to see through the mirage and savour the magic of what it means to be alive. Old age is a recently acquired privilege for humans. It's our opportunity to examine more deeply and see more clearly.

Peace and love to all.  Nigel

Second try

As we headed out of town on Tuesday to celebrate Louise's 65th birthday at a lovely resort north of Nanaimo, I got a call asking me to report to Vancouver General Hospital at 7.30 the following morning! Louise is very good about accepting these fluctuations in fortune so we drove straight to the ferry instead of a resort. I showed up on schedule for the biopsy and was a little nervous as this time the approach to tumours was to be through my back muscles! I need not have worried. I am accustomed by now to intravenous lines, injection of dyes, controlled breathing in the CT scanner, sedation, etc. The surgeon had extraordinary skills and was done his work in a jiffy. I had to rest for a while to make sure there was no excessive bleeding and then Louise drove us all the way home again! My orders are to rest for two days but that will be difficult as I feel terrific and the weather is perfect. Hopefully, we have harvested many active cancer cells this time and the Personalized Oncogenetics study can go ahead. I should hear soon if the sample was successful.  Peace and love to all as this endless summer unfolds, Nigel

Setback

Last night, I learned that my recent tumour biopsy did not provide enough cancer cells for the genetic testing to be carried out. Most of the harvested cells were dead. There is good news hidden in there too!  So, I have indicated that I would like to move on to a second biopsy at the earliest opportunity. As soon as arrangements are in place, I will post again. In the meantime, I am keeping well and active. The biopsy did trigger a period of pain for two weeks but that is over now and I am back to normal.  Our summer continues perfect every day.  Peace and love, Nigel

Summer Progress

 

Isn't summer grand? Every morning dawns bright and warm. The world is awash with growth and colour! The bounty of the earth is evident everywhere!

Yesterday I signed the consent form for a full genetic profile of my DNA, both from blood and from a tumour. I will soon know what has gone wrong in the delicate workings of the body and also whether there are any treatments currently available to target that weakness. I did not think I could get to this stage on home turf. I am lucky that funding has recently become available for this effort at the Genome Sciences Centre in Vancouver.  Within the next two weeks, I will have a biopsy of tumour tissue and a blood draw done on the same day. There will then be a 6 to 8 week wait for results.

On the treatment front, there has been no change since my last blog. It's not so easy to access treatment of any sort. The struggle continues of course and I never lose hope. I am still trying to get radiation and also a new immunotherapy called PD1.

The good news is that I feel really well and am thoroughly enjoying a perfect summer here in Victoria! May it be the same for all of my friends and family!  Peace and love, Nigel