Welcome to our 'Hopeful Spot'

Dear Family and Friends,

We look forward to sharing Ian's medical progress and our family's journey with all of you.

This is where we will do our best to keep you up to date on Ian's medical condition. This is how the story started:

In August, 2007, Ian developed what started out like an itchy fly bite on his right shoulder. Within two weeks it was about 8 mm in diameter, raised, red and extremely itchy. It was excised, and found to be a "stage IIB malignant melanoma". This was followed by a wide excision down to muscle, skin grafting, and what is called a sentinel node dissection. Radioactive material is injected in the original site, and all lymph nodes that accumulate the material are removed, presumably the lymph nodes that drain the original tumour.

As this tumour had aggressive features, the risk of recurrence was estimated at 30%. A search of the literature revealed several prominent names, including Dr. Lawrence Flaherty of Wayne State in Detroit. I emailed Larry, who emailed me within an hour, and called me later that day, talking for an hour. He recommended that I consider a year of high dose interferon alpha. This appeared to reduce the recurrence rate by 25-30% - ie in my case maybe to 20% from 30%. I took the drug IV at home, in Joan's hospital, and by self injection for 11 months.

I began in March to have upper abdominal pain. When the maximal treatment for a peptic ulcer had no impact, an ultrasound, followed by a CT scan revealed that I had multiple area of tumour in my liver (about 10 or so, 1-2 cm in size), an 8 cm mass of lymph nodes just outside my liver (porta hepatis), and a 2 cm right axillary lymph node. Undoubtedly the cancer had spread from the get go.

After a whirlwind of emails to experts (Larry Flaherty, Teresa Petrella, and Jeff Weber of Detroit, Toronto and Tampa respectively, as well as Paul Chapman of Memorial), an opportunity suddenly arose unexpectedly. Jeff Weber had an opening develop in a then closed study of a drug that for him looked quite exciting. Like most of the treatments of melanoma being investigated, it is an immune modulator, that helps the immune system attack the tumour. I had to be in Tampa in 36 hours to be screened. This drug is given IV over 90 minutes every three weeks. Responses are delayed. Imaging to assess response is not done for 12 weeks. Some dramatic responses have occurred much later. The main adverse effects are fatigue, diarrhea, cramps, and a rash.
I was screened on June 5th, and hope to start the drug on June 9th.

Your interest in our journey is a comfort to us. Please sign on as a follower, so we know you are there. Add a comment as you wish. If you would like, email Ian at dr_i_reid@hotmail.com.

We also want and need to hear your news. It will be affirming for us to know that we continue to be an important part of your lives.

In addition to access to the best medical resources, we are most fortunate to be blessed with all of the ingredients in the recipe for a positive outcome. We are surrounded by love... and so grateful for our closely knit family, our many precious friends, our caring community and our nurturing church family. We share a deep and abiding faith that God is walking this difficult path with us.

Please take comfort in knowing that for us, this is a journey of hope. While we are well aware of the seriousness of our situation, we wish to focus on our blessings and strengths, celebrating each day to the fullest.

Remember, continuing to include us among those who share in your joys and sorrows... sending us your messages of encouragement, faith, hope and love... and keeping us in your thoughts and prayers are the most important things you can do to support us.

Blessings to all of you,

The Reid Family


Thursday, October 1, 2009

On the Road Again

Well, I am off again from home, this time with some welcome detours before Tampa. Here's what's happening:

Overall I am feeling fairly well, although physical stamina is still slow to build. The medication I take for pain leaves me a little dizzy and weak at times. However, I am eating normal food, I am home, doing things I want to do, enjoying friends and family. Much to be thankful for.

I tested stamina during the Jazz and Blues Festival. It was terrific. Not only was Patrick home, celebrating the launch of his great new CD 'No Destination'. After the concert Friday there was a wonderful influx of at least 15 musicians to the house, consuming a keg of microbrewery beer, and jamming in the basement around Doug Riley's Hammond B3 until 5:00am. With 5 sax players of the calibre of Mike Murley and Kelly Jefferson, B3 players like Vanessa Rodriguez, guitar players like Ian Toms and Jim Head, two drummers, two bassists, and many others. Needless to say, I didn't miss any of this. The same thing happened the next night with Ted Quinlan and his group. It was a thrill. I only wish that Doug Riley and Chris Driscoll could have been there. When Martin on the B3, Ian on guitar and Rich Knox on the drums beat out Bob Dylan's 'Don't think twice, it's alright', it hit my heart. This was the best track on the DVD make from the memorial concert for Chris Driscoll in January 2005. Powerful stuff.

I am in Toronto first to be at the launch of Pat's CD at Hugh's Room, Sunday October 4th. In the meantime I will visit the Fall Home Show. I have decided that if I beat this melanoma, I will reward myself with a kitchen makeover. I love working in the kitchen. It appeals to my need for
immediate gratification - in this case - a gustatory reward.

I will be in Tampa October 8 and 9th. It is unlikely that anything will change. I will likely have repeated imaging to be sure the cancer is stable, or hopefully slowly continuing to disappear. If it progresses, I won't get more of the ipilumamab, as the side effect of colitis was so severe. However, there is a new similar antibody for biological therapy called PLX 4032, with exciting early results. It may even be available in Toronto.

Clearly this is going to be a journey, that I cannot accelerate, or predict. Mentally I am pretty well recovered, but my body won't permit a return to much I would like to do. I would be a marsh mellow on the squash court, and tire after 30 minutes on my new bike. I nap - something I never did. I am on a mitt full of medication, whereas I would have none three years ago.

But, when you are where you are, and don't have choices, one must learn what I have not learned much in the past, patience. Those that know me well, know that I typically found the straight line between where things are, and where I felt they should be. The impatience in some cases led to an earlier arrival at the destination, but sometimes it was at a cost of going over, around or through others who refused to be convinced of the wisdom of my self acknowledged wisdom and judgement. Now, when the journey, with its detours, unexpected roadblocks, and unpredictability is imposed on me, I must approach it with a new paradigm, that teaches patience, listening, awareness of others and their feelings, humility (believe it or not), and comfort with uncertainty. I want to continue to improve, possibly returning to urology in the new year, but can only hope for this. Other than good self care, I am not in control - I gave it up months ago.

Life is so terribly unpredictable. A dear friend, generally healthy, landed in the hospital three days ago with a heart attack. Joan's friend and former med-school roommate, died of pancreatic cancer yesterday, after a diagnosis less than two weeks ago. It is a reminder of an axiom I truly take to heart:

"We are not human beings on a temporary spiritual journey.
We are spiritual beings, on a temporary human journey."

Blessings to all.

Ian





Posted by Ian at 11:28 AM

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