The Reid Family's Hopeful Spot

Each Christmas is a celebration

2011-12-14T03:45:00.002-04:00

This Christmas marks two and a half years since my diagnosis of metastatic melanoma. At the time, there was a less than 10% chance of survival. By great good fortune, I had access to Ipilimumab, which is now released, and drug of choice for this disease. Remarkably only two doses led to what is now a remission. My recent CTs show only inactive scar tissue 5% of the size of an original mass, and a normal liver.

On the other hand, I was reminded of just how fragile things can be. I had a tender reddened lump develop near the original site. Fortunately it resolved completely with antibiotics. However, for a few days, I was worried.

I am also reminded of how nothing stays the same. I lost my father in law this year. In June, my precious nurse Cathy will be retiring after working with me for 20 years. I am closer to retirement myself than I realize.

At this Special Season, where we are reminded of how unconditional love entered human existence as an example for us all, let us all be thankful, and treasure our most important gift, the gift of love.

May the Joy, Peace, Hope and Love of Christmas be with you all.

Ian

Two years since almost a death sentence - so much for which to be grateful

2011-07-26T09:53:00.002-03:00

Two years ago, I was in Tampa Florida, facing widespread liver metastases from an aggressive melanoma that had spread from my right shoulder, in spite of a year of interferon injections. I was placed on an experimental immunotherapy called ipilumumab, a new drug that had not been approved for use, and only available as part of a clinical trial.

After two doses, I faced a life threatening complication of a pan-colitis, an autoimmune side effect that left me unable to eat for two months, losing 35 pounds, and leaving me quite weak. I was not eligible for the 7 further planned doses of the medication.

Miraculously, within months, all the liver disease disappeared. A 10 cm mass outside my liver was shrinking steadily. Every three months the mass shrunk by 20-30%, until it was only 2.3 cm in diameter, or over 90% smaller.

As of the CT in July, the mass ceased to shrink. The question was then - was this scar tissue, or active cancer that was no longer responding? A PET-CT scan was done in Halifax over a week ago. This detects and quantifies any evidence of metabolic activity in the mass, or elsewhere in the body. Fortunately, there was no evidence of any metabolic activity in the mass, suggesting it was inactive scar tissue. Furthermore, there were no other areas of abnormal activity, helping to rule out other previously unsuspected spread.

In short, at this time, I appear to be without any active cancer. Considering that two years ago, the best results with a highly toxic therapy was a 10% remission rate, this is nothing short of miraculous.

I continue to require regular CT imaging, next in four months, and then at reduced frequency for life. Melanoma has a strange pattern of recurrence, much like some breast cancers, so being disease free for even five years is not a guarantee. However, none of us are born with a guarantee.

I feel well, though I don't have the inexhaustible energy I have exploited over many years. I continue to work out two to three days a week, with the discipline of my trainer Steve Mallett. His mantra, that it is up to us to be brutally consistent, is very appropriate.

I am surrounded by a loving family, good friends, and a profound sense that we are not alone in this world. I am very grateful for what appears to be more time. I am fully aware that this is not earned or deserved, as I have far to many patients that deserve this and are not so fortunate. I am constantly reminded that life is a journey, time is precious, and our relationships are our greatest currency.

Blessings,

Ian

One more CT/MRI, three more months to be grateful

2011-04-21T15:42:00.002-03:00

In early April I underwent a full body CT scan and an MRI of my head. Fortunately there is a brain, my chest is clear, and the mass outside my liver has shrunk a further 30% to be about 5 cc in volume. This is a dramatic drop since I started treatment when my liver had many lesions, and the mass was about 200 cc in volume. I continue to feel well, and am working at about 85% of full capacity.

I have much to be grateful for. My son Pat continues his musical career in New York, with returns to the Banff Centre of the Arts regularly. Steve has made it to medical school at McGill and is teaching the MCAT course this summer. Dave is finishing third year on keyboard at McGill and is off to the Banff Centre on scholarship this May. Joan is well. My parents are here, happy and healthy.

I do continue to have to deal with a hospital administration that demands that I do 11 of 28 days on call. This is too much even if I were healthy. Hopefully this will be resolved soon.

Ipilumumab is now available. Now melanoma patients have a better option. Wonderful.

Easter approaches, when we are reminded that we are not alone, we do not die and disappear, and that we are loved.

Best wishes,

Ian

A New Year

2011-01-15T11:17:00.002-04:00

Christmas is behind us, and 2011 beckons. I am blessed by continuing to feel healthier and stronger. My CT scan, now done every three months, shows further shrinkage of the mass outside of my liver to less than 10% of its original size 17 months ago. It is nothing short of miraculous that after only two doses of a planned 9 doses have resulted in such a change.

My oncologists have supported my beginning to return to the emergency call schedule. I still work four days a week, and rest on Wednesdays. Unfortunately some of my colleagues at the hospital do not support my current limitations and are exerting enormous pressure to return to my previous workload. This has been a source of considerable stress and pain.

On a positive note, my family are all well. My oldest Pat, is in New York City studying and composing. He has a premiere of his suite for jazz trio and string quartet being performed in Toronto next week, after being recorded for an album. Steve is working towards medical school in the fall, and working at Dalhousie Med School. Dave is completing his third year on keyboard at McGill, played the Montreal Jazz Festival last summer, and may go to the Banff Centre with his ensemble East-West this spring.

The most important priority is to keep getting well. The cancer journey is not over, not until the mass is gone, and then for 10 years after that. Melanoma can recur in bizarre places and times. I continue to try to balance diet, exercise, rest, mental health and spritual health dimensions which I am convinced have played a role in my response to treatment. Regardless of pressures from the hospital and colleagues, I cannot forget this most important priority. I have had to discover that most colleagues are not friends, just co-workers. We are a commodity, and quickly forgotten and replaced. It is good to know this, to avoid deep disillusionment and disappointment.

My next CT will be in three months. It will be another milestone. Hopefully I will be even healthier, and still have a career in PEI.

October Thanksgiving

2010-10-06T20:34:00.002-03:00

It has been three months since the last blog entry, and three months since the last CT scan. I continue to feel well. I was pleased and relieved to find today that the mass outside my liver has shrunk further to be only about 2.2 cm. My immunity with the boost of ipi continues to do its miracles.

Joan and I celebrate our 30th wedding anniversary this year. We are about to embark on a 30 day
trip to China, then Cambodia and Vietnam, together with our good friends Gary and Lynda Rayner,
and 26 other Maritimers.

It will be wonderful. The sights to see are too numerable to mention. The past three years have been so challenging, to get away for a month is wonderful.

I continue to encounter others suffering from melanoma. It appears that ipilumumab may be the drug of choice in this disease once it is fully approved and released. Unfortunately, the only access currently is for those for whom standard chemotherapy has failed. Some have to have two courses of therapy unlikely to help just to qualify. For me, I cannot access the drug at all due to toxicity last year. I might be able to once the drug is approved.

This is the Season of Thanksgiving. I have so much for which to be grateful. I don't know why I am in the fortunate 10-20%. It is just as well we don't get what we deserve sometimes.

Best wishes to all who have followed my journey, and thanks.

Ian

The Hopeful Journey continues

2010-07-07T14:05:00.003-03:00

Today, July 7th, is almost exactly the one year anniversary of my first trip to Tampa, and my first dose of ipilumumab. It is my 6th CT scan, and the fifth to show further improvement. The remaining mass outside my liver is now about 13 ml in volume, compared to over 700 ml a year ago. This is a further 30% reduction from the 18 ml size on the April CT scan.

With this continued trajectory of improvement, I am less anxious about these CT's, but cannot escape the stakes that each one represents.

I feel very well, and am more physically fit than in years. My family are well. Pat is off in September to New York for a year of study, performing and composing, thanks to the Canada Council. Steve is working for Island Hospice, developing a youth bereavement program. He did very well on his MCAT and will likely have choices of med schools for next year. David is in Montreal, having been selected with his quintet to play at the Montreal Jazz Festival, on Canada Day. They performed out in front of Place des Arts for an hour, in front of over 1,000 people. Joan continues to be well, although some dental issues have made things miserable.

We hosted the Canadian Urological Association, with some 850 people here last week. With the music of Rawlins' Cross, and the food of Chef Michael Smith, it was one of the best CUA's ever. I was co-chair of local arrangements. It was not an onerous task, and for the most part, a pleasure.

Great day. The sun is beautiful. The strawberries are in. There is so much for which to be thankful.

Thanks again for the support of so many of you. No one can thrive, or even survive in isolation. I am always feeling the comfort and care of so many.

Blessings,

Ian

The Waiting Game - next CT in early July

2010-06-16T21:48:00.002-03:00

This has now become the longest time between CT imaging since the journey with metastatic melanoma started just over a year ago. It is almost 11 months since the second and last of my ipi treatments, and over 9 months since my month in hospital with fulminant colitis. Most of the time now I don't even think about the next CT. However, when I do, the questions about what if things are worse arise. They are quickly doused, partly as I hope they are irrelevant, and partly because I don't know the answer. It's not denial, just -what's the point of worry? I'll deal with it if and when I must.

I feel well, and after six months of thrice weekly workouts, am more fit than in the past 20 years. Most of my family are well, my parents, dear wife Joan, and three sons. My father in law unfortunately is suffering from an advancing dementia. As a good friend said recently, with dementia, you lose someone twice, and the first time is the most difficult.

I still limit my practice to four days a week, and am not on call to the emergency department. This will all change once I am considered disease free, but not before. My own immunity is all that is fighting the remaining disease. I can't get more ipi. With the support and direction of my doctors, I maintain these boundaries. Unfortunately, by some colleagues involved in hospital administration I am under considerable scrutiny over these limits, and intense pressure to do more, or if not more, as a consequence, much less. Frankly, it is unwelcome and unnecessary added stress.

Since returning to practice in January, I have been deeply touched and saddened by at least six stories of patients in my community with melanoma that have not been so fortunate. One teen that had a spot on her scalp that failed to go away after many months, several doctor's appointments, only to find she had metastatic disease. this was over 30 years ago, before any effective treatment. She would have been my age. This kind of story fills me with sadness, and a deeper sense of gratitude for my experience so far.

Also, a friend my age with metastatic pancreatic cancer is responding well so far to his chemotherapy. You are in my thoughts and prayers BC.

Hopefully in early July, all will look better, and if very fortunate maybe clear of disease.

Shalom,

Ian

CT scan #6 - the encouraging trend continues

2010-04-08T15:56:00.002-03:00

You know, after four successive CT scans with improvement, one might think it would be routine now. It wasn't. I didn't sleep well last night. Today, the CT scan shows that my liver, once studded with over a dozen areas of metastatic spread of my melanoma, is now completely normal. The mass outside of the liver is 19% smaller, now the size of a large grape, from the size of an orange originally.

I am so very grateful. It is remarkable that two doses of this drug that activates my T-cell immunity, could have this effect. I am doing my best to support my health, as the book 'Anticancer - A New Way of Life' suggests. This includes dietary changes like more vegetables, less animal protein, little red meat. I also continue to exercise vigorously for 2 hours three times a week minimum, and get 8 hours rest nightly. I hope that making most things 'small stuff' minimizes the stress factor. I engage my spiritual life with church, choir, lots of reading, and valuing and nurturing important relationships. These are all things I should have been doing better for years.

The journey continues. Mind you, so is life, a journey, not a destination.

Best wishes,

Ian

We made it to the mountain top.

2010-03-10T19:07:00.003-04:00

Dave Steve Pat Ian

There was a time from the diagnosis of metastatic melanoma last May, until late into the fall, when the picture you see was a distant hope. The photograph is of Ian our three sons at the top of Mount Revelstoke, British Columbia, at the beginning of five days of wonderful skiing. The boys, all excellent skiers and credentialed instructors, took their father on some terrain (steep pitches, glades, bumps and bowls of powder snow) that were exhilarating, and challenging. I ended up on my butt more times that week than in the previous decade, but mostly into a pile of powder snow with only my pride injured.

I worked out three days a week for 2 hours since January to regain strength and stamina in order to keep up. With the exception of one Thursday afternoon break, I was successful.

I have a new perspective on the issues of health maintenance. Keeping fit, eating well, balancing the demands better, adequate sleep, making time for close relationships and spiritual nourishment, are all fundamental. Health is so much more than the absence of disease. I hope the lessons learned will serve me and anyone over which I have influence in the future. Life is not a dress rehearsal. We only walk this way once.

Back to work about 65%. It feels great. The next CT scan is in three weeks, another milestone. This disease can never slip too far away from one's mind.

Thanks to all who walk this journey with me. Look after yourselves. Don't wait until life teaches you the lessons the hard way. Try to live without regrets. I think I am a more patient, tolerant, peaceful and thoughtful person now, at least I hope so. There was work to do on these fronts.

Best wishes,

Ian

More to be grateful for - good news again on CT

2010-01-27T18:34:00.002-04:00

Today was my fifth CT scan since the diagnosis. This was the longest period between imaging since treatment started in June (and finished then in July!). The routine was very familiar. However, the anxiety however well sequestered, was very real. Fortunately, once again, there was very encouraging news. The lesions in the liver are all but gone. There are two, which could easily have been ignored if not for the previous films to which to compare. The lump of lymph nodes outside the liver have shrunk about 40% from their appearance two months ago. Everything else in the abdomen and chest are normal.

It is nothing short of remarkable, if not miraculous that the immune system, turned on by a drug produced by rodent ovary cells, six months after the last dose, continues to be effective. This new area of bioengineering, cancer genetics and immunology is exciting. I hope that this medication ipililumamab will be available generally to melanoma patients soon.

Three weeks of thrice weekly workouts under a personal trainer, some squash (quality questionable), some Yoga, and I am feeling substantially better. I am not close to my traditional energy, but there is steady improvement. I have a goal to be able to ski and keep up with the boys in Revelstoke in a month.

Blessings to all.

Ian

A New Year - Hope, Opportunity, Challenge, Worry, Peace

2010-01-10T16:31:00.003-04:00

Christmas 2009 is past. The decorations are down. The three 'boys' (now 20,24 and 26) are gone back to Montreal or Toronto. The accompanying hordes of friends are gone back, and the house is quiet. Attention is now turned to the 'turning of the page'. I returned to work part time this week. People have been very kind and gracious. Lots of welcome hugs and best wishes, and even thoughtful, polite applause at a Surgery/Anesthesia meeting. I didn't seem to forget anything critical, and surgery went just fine. However, fatigue was noticeable by week's end. The gentle pace recommended by the many concerned women in my life was wise (Joan, Mom, Cathy, Carla, Sue, Carolyn, Mirielle and others).

A reality check did occur this week. It was the fifth anniversary of the tragic death of Chris Driscoll, January 9th, 2005. We shared company with the Driscolls last evening, laughed, shared stories, and a few tears. Don't we know how so much can change drastically so fast.

A second reality check occurred the same day, when I had a long chat with a man I have known for over 20 years, of my age, just diagnosed as I was with liver metastases, this time likely from pancreatic cancer. A father, great fellow, contributor to our community, who is facing a very uncertain future. When I faced this, many fortunate events followed. I enjoyed very successful experimental treatment, and the future looks much brighter. I pray he will be as fortunate.

My son Steve, aiming now for medical school in 2011, is exploring what he has learned from his father's recent experience and his mother's long experience in palliative care. With the mentorship of Dr. Ray LeBlanc of Dalhousie, under the Governor General's Order of Canada Mentorship program, he will pursue further understanding of the bio-psychosocial-spiritual dimensions of health. We have all learned that health is much more than the absence of disease. He hopes to learn this personally, to network with others at medical school with similar views, and to possibly contribute to a broadened enlightened viewpoint within his class and later, his practice and profession.

We have all found a recent book called ' Anti-Cancer, a new way of living', written by David Servan-Schreiberan MD PhD, an excellent well researched resource on this topic. This author himself had a brain tumour. After treatment, facing a high chance of recurrence, he asked his oncologist "What can I do to help my chances of survival?". The answer he received was essentially " Look after yourself, and what will be, will be." He was not satisfied with the answer, and used his considerable skills and resources to research what turned into his personal answers, and this book. It is ideal for those of us brought up in the era of 'evidence based medicine' as the Holy Grail.

For me, I try to balance making the most of today, looking forward to the coming week, trying to get stronger and more active. Meanwhile I must accept without being preoccupied, the reality that it could all change dramatically with the next CT scan, scheduled for Wednesday January 27th. As I said early on in this journey, I try only to worry about the things I can control, which is less than I thought a year ago.

I try now to consciously be aware of the many things for which to be grateful. This mainly focuses on my closest relationships, and the well being of those I care about. Most other things are clearly 'small stuff'. I realize that 'nothing stays the same' and that we live with constant change, even if we are not aware of it. As someone once said "No one gets out of this life alive. There are no U-Hauls behind hearses." What matters is what we do, what we value, what we worship, and how much we love, while we are temporarily here.

Thank you to the so many of you following this blog, who have been so kind, thoughtful and compassionate to me and my family in 2009. Thank you for your interest in my welfare, and your prayers and thoughts. I am not alone. I hope that any of you facing challenges, pain and difficulty in this coming year are similarly blessed. One word of advice -- you can only know the wellspring of care and support out there if you share your pain and vulnerability with others. We spend far to much time pretending we are self sufficient and don't need each other. We are all scared children at heart, under the veneer adulthood layers on. Four hugs a day - minimum. Doctor's prescription.

Ian

Blessings to your family from ours this Christmas

2009-12-21T21:07:00.003-04:00

Dear friends. This Christmas will be like none other. In May, I had a 15% chance of survival, and an 85% chance that this would be my last Christmas. Now that I am so much improved, fear no longer hangs over this season. It is replaced by a new sense of gratitude, and a desire to live in the moment. Time has new meaning. Most things are "small stuff". My family will all be together as of today. We have traveled a difficult journey together, each in his or her own way. The journey is far from over, but no longer permeates every day. We have not been alone.

Today I chatted with Cathy and Carla about my return to work January 4th. We are all looking forward to it. It means some return to normality, to structure and routine. It is only two weeks away. It will be good.

I work regularly with Steve Mallet, a personal trainer at the Spa, as I work to regain the strength and stamina I usually enjoy. It is a good pain. I have a long way to go yet.

As we all gather with family and friends this Christmas, let us remember what is truly important. Let us be kind, thoughtful and merciful to each other. Nothing stays the same. Let us enjoy and relish the moments of joy and fellowship, as at some time their memory will be a great comfort. Carpe Diem (seize the moment).

May the true love, peace and joy of the season surround all of you that have joined me on this journey. Thank you. May 2010 be a good year for all.

Ian

Turning a page

2009-12-01T23:17:00.002-04:00

I have just returned from my fifth trip to Tampa, Florida, this time for 12 hours. I flew from Toronto arriving at 11:30 pm, had bloodwork at 7:00 am, saw Dr. Weber at 8:00am, and was flying back to Toronto at 11:30 am.

My CT scan has showed further improvement in all areas of the disease in and near the liver. Dr. Weber and I am convinced due to some persistence of side effects, that the hyper-immune response due to the drug ipilumumab continues, although not as intensely as in August when I was in hospital. There are plenty of examples of continuing effects for months.

I am off all medication for pain, and for colitis. I am pain free.

I am now much closer to normal, likely 85-90%. It is time to turn the page and plot a strategy to return to a more normal life. This cancer journey will likely continue for some time. It is time to move on. I need to, I want to, and I am going to.

I will return to practice in January. It will be at a less frenetic pace than in the past, and at a sustainable and healthy level. I also have some work to do in 'reconditioning' as I am rather 'deconditioned'. I am certainly not ready to play squash well, run the floor refereeing basketball, or skiing. I am determined to do all of these this winter.

I will need a CT again in two months, at the end of January. If I am fortunate, further treatment may not be necessary. Even if so, there are options, even including further ipi if it is released by the FDA and Health Canada.

Thank you all for your love and support during the past six months. Look after your health, it is your most valuable asset. Do not ever take it for granted. Look after your closest relationships, as nothing is more important at crunch time.

See you soon.

Ian

Another encouraging milestone.

2009-10-31T09:42:00.002-03:00

It has now been just over 5 months since the diagnosis of stage IV melanoma. My fourth CT scan this past week has shown further signs of regression, a further 40% shrinkage compared with the CT of 6 weeks ago, with a total reduction of 93% since May. This is so encouraging, with the continued effect of the two doses of ipililumamab in June and July.

There are some annoying continuing adverse effects with fatigue, sweats, slight dizziness, weakness and reduced stamina. However, these are tolerable, and a small price to pay for continued reduction in my tumour burden. As these are signs of continued drug effect, these symptoms are in a way, comforting.

I return to Tampa at the end of November, possibly for the last time.

I have been blessed with the opportunity to be treated with what will likely become the drug of choice for melanoma. I have gone from a prognosis of 10% survival, to something so much more hopeful. I have been surrounded by a circle of care, love and support who's dimensions are enormous. I have a stack of cards almost a foot high. I have so much to be grateful for.

Blessings,

Ian

Home again

2009-10-16T14:15:00.002-03:00

We arrived home from Tampa, visit #4. The planned 36hr stay morphed into a longer stay. I developed a 12 hour period of atrial fibrillation, a rapid irregular heart beat, that came and went mysteriously without explanation. A thorough workup including a very high tech echocardiogram showed nothing abnormal. A medication was added, and I have been fine since. However, it delayed our return by 4 days. Rebooking flights over the Thanksgiving weekend was impossible. Joan toiled for hours dealing with two airlines and a hotel as I was undergoing the testing. Fortunately, with a little arm twisting, Continental and Air Canada did come through without outrageous penalties and high return fares, and the Sheraton Gateway Hotel at Pearson was cooperative.

My oncologist is very encouraged by results so far. I had a dramatic response already, earlier than most, and he expects this to continue. I have to have CT scans in a week and 5 weeks from now, then every 3 months for a while. If all is stable or improving, I will not have to return to Florida after November's visit.

Generally I feel well, although the GI issue is not fully settled, and I have more hot flashes than most menopausal women or my prostate cancer patients on hormone suppression. I have great sympathy for these people, and those with colitis. However, these symptoms reflect some continued effect of the ipilumamab, and hopefully continued effect on the melanoma. Medications are being weaned. I have a ways to go to regain physical strength and stamina. My weight is now healthy again. I am starting to recognize myself.

We have had little rest over the past month or so. The PEI Jazz and Blues Festival was wonderful, with four days of great music. I was quite involved in the end. Two of the evenings after the mainstage events finished, the unofficial celebrations and jam sessions started in my basement. Surrounding Doug Riley's tuned up Hammond B3, we had many of the great musicians from the festival drinking Gahan House microbrewery beer and playing music until 0400 or so for two successive magical evenings.

We also attended Patrick's album launch in Toronto, at a wonderful venue called Hugh's Room. Three great groups launched CD's under Steve Bellamy's new Addo label that night. The place was packed. Pat's group sold almost 100 CD's that night. We then went to Tampa, and saw the premiere of Pat's friend Aszure Barton's stunning new choreographic creation called BUSK. Try searching her name on YouTube and get a taste. Being there at the time of the premiere was a totally unexpected wonderful coincidence. The production was part of Michael Barishnokov's arts festival in Sarasota. Fortuitously, Pat managed a cheap flight from Toronto, caught the last performance of BUSK, and was able with Aszure to spend a beach afternoon and dinner evening with us at St.Petersburg.

Just to show how pooped we were on return, we managed to leave our two laptops on the bottom of our luggage cart at the airport in Charlottetown. We retrieved them thankfully the next day. Only in PEI I suspect.

We are proud of Pat and his remarkable progress as a composer and performer. We are also proud of Steve, who was selected through the Governor General's office, with 24 other Canadian young people, to be individually mentored by previous recipients of the Order of Canada. He travels to Ottawa in a couple of weeks for a few days to meet the Governor General, the other successful candidates and their mentors.

(Dave - if you are reading this, we are of course very proud of you too pal!)

It seems we are on a rapid run towards Christmas. We travel to Edmonton in 3 weeks to visit Joan's family. Her Dad has struggled with deteriorating health, so we want to see them and have a good visit. We then go to Toronto, where we will see Aszure Barton's new original ballet commissioned and performed by the National Ballet of Canada, I will take a detour to Tampa again for 36 hours, Pat and I treat ourselves to a Raptors-Phoenix Suns game, and we return to Charlottetown. Oh yes, Christmas is just over 3 weeks later.

Hopefully there will be continued encouraging news, resolving side effects, improving overall health, and some eventual consideration to returning to practice. No definite plans or expectations at this point - we have learned not to do so. A day at a time, and celebrate what is.

Things could be so much worse. We are grateful.

Best wishes to all.

Ian

On the Road Again

2009-10-01T11:28:00.002-03:00

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

The Journey Continues

2009-09-18T10:41:00.002-03:00

Well, things are encouraging. I am eating well, and my weight has reached the ideal level. I had fifteen pounds I didn't need. My colitis is virtually settled, I am almost off prednisone, and hopefully will not look back. My main job is to regain stamina and strength. It is remarkable how weak I feel. I will not broadcast this, but either son could likely take me in a wrestle right now. It will likely take several months of structured exercise to return to normal.

My followup CT was done yesterday. The disease in and near my liver is stable, virtually unchanged from 24 days ago. This is good, as I haven't had treatment for two months due to the colitis. It would have been nice to see further shrinkage, but this was a lot to ask for after such a short time.

Off to Tampa to see Dr. Weber October 9th. Undoubtedly he will recommend regular CT's and no more ipilimumab. This drug if given again might have severe and unpredictable adverse effects like a recurrence of the colitis.

This will be a long journey. I will just have to live with the uncertainty, as as long as there is anything on the CT, it might or might not be active cancer. Often the cancer is replaced by scar
tissue after a major regression on therapy. Unfortunately, when the CT is not normal, there will be questions.

Anyway, lots to look forward to: the Jazz and Blues Festival next week, Patrick's album launch here and then Toronto October 4th, the ballet in late November, and a Phoenix Suns vs Raptors game after that.

As always, thank you for your interest in following my journey, and the visible and invisible support I feel from all of you.

Blessings

Ian

Feeling stronger, and normal is in sight!

2009-09-13T05:21:00.002-03:00

After 6 weeks of colitis, 31days in hospital, 4 weeks on total parenteral nutrition (TPN), 2 weeks on home TPN, nothing orally for 3 weeks, 30 lbs weight loss with muscle wasting, the corner has been turned.

I am off all IV feeding, freely mobile, and finally after over a month, eating normal food again with little restriction. It is like getting out of jail. Strength improves daily. Walking daily. Hopefully, I will be able to get the bicycle out soon.

Future: CT scan Sept 21 to confirm continued progress
continued effort to reduce and eliminate all pain medication
Tampa Florida October 9th
?? further maintenance ipilimumab??

Don't forget the Jazz and Blues Festival Sept. 24-27th. Field Trip opens in the big tent @ 7:30 pm. Fabulous new CD to be released. Wonderful music. Don't miss it.

Thank you for the continued blanket of support that you all provide. I continue to be amazed at how wide and deep this circle of care and concern has grown. I am humbled, and very grateful.

Ian

?Dawn of a new day - or end of a bad month.

2009-09-09T18:52:00.002-03:00

Today, I am closer to normal than in 6 weeks. My weight is now up to ideal (though not the cuddly fellow of June). I am gaining weight well, indicating that the colitis is resolving, finally. It has been a month without food. It was starting to get on my nerves, I must admit. If I manage on the liquid stuff for a few days, I can introduce real people food, one example every two days.

The next hurdle is the CT on the 21st. I have every reason to be optimistic, after the last one's dramatic improvement.

As you can imagine, there is a spring to the step today. No IV line leash at this moment. Whoopee!

Don't forget - Jazz and Blues Festival Sept. 24-27, with Field Trip on Friday Sept. 25th 7:30pm. See you there!

Ian

SLOWLY BUT SURELY MOVING FORWARD

2009-09-02T20:01:00.002-03:00

Home for 5 days. To be here after a month is wonderful, even if tied to an infusion pump 20 of 24 hours. With the tremendous help of everyone from Unit 1 staff, the pharmacy, my physicians, the Palliative Care Unit (don't worry, I'm not dying), I have set up home total parenteral nutrition TPN. Unlike other provinces, we have not developed a formal program in PEI, this is rather ad hoc. However, it released me from hospital, hallalujah!

Between MD,Pharmacist Joan, and I we have got this working swimmingly. The little pump I carry is about 12 lbs, plus about 5 lbs of bags of fluid, so I move about fairly easily. The pump requires being plugged in most of the time if I am not moving about.

Most encouraging, is that I have been able to add some oral liquid supplements, about 750 cc/day, that gives me 1500 extra calories, andI have gained 4 lbs. We are moving in the right direction. The gut is settling slowly, but surely.

Lots ahead. CT scan again in 3 weeks. Based on the results of others, this should be affirming, not as big a worry as 2 wks ago when we first looked at the treatment results. Off to Tampa for Oct. 9th.

Strictly told to 'nail my foot to the floor' here for a while, by all concerned. I guess I have been rather sick they tell me. However, I am now sleek, streamlined, and can hide in my old shadow.

But - now to restart living again. Jazz and Blues Festival Sept. 24-27th. Great lineup. Friday night opens with a super young quintet at 7:30pm. It of course happens to be Field Trip, my son Pat's group now out of Toronto. They launch their 3rd CD called 'No Destination'. Original wonderful tunes, mastered by Steve Bellamy, they hit this one out of the park. Come and hear it!

We return to Toronto for the launch there Oct. 4th. We also get to Toronto Nov 24th for the premiere of Azure Barton's choreograped original work with the National Ballet. Azure is Pats friend, and a lovely girl, a hot ticket in New York now.

Thank you to all who follow this journey with me, and have been such a support.

Blessings, Ian.

HOME AT LAST, WITH HOPE

2009-08-30T14:06:00.002-03:00

I was released from hospital yesterday, after 31 days with severe colitis from my treatment. During this time I had three 'false starts' where I almost made it home and relapsed. Clearly this colitis will be very slow to resolve. To get there means total bowel rest - ie. nothing to eat or drink except sips, and a tiny amount of supplement. I am on home TPN (total parenteral nutrition).

We got home yesterday. It was wonderful. I now carry a pump system around everywhere that feeds me constantly. I am not hungry, but miss the tastes and smells of food. I lost 30 lbs in the past month, so have a way to go. Even exercise other walking is forbidden until my weight improves significantly. I teased Steve, my 6'3" son today, I am almost his size now, like when I started university. Unfortunately, as well as losing fat, I have lost muscle, which I miss. I am rather a weakling at this time. It is likely I will be a month on this pump system at least. I can be free of it for 4-5 hours at a time, and get the rest of my nutrition in 19-20hrs.

The good news of course is the cancer is responding dramatically. It is beyond dreams. A follow up CT scan will be done in a month to chart progress. I certainly won't be travelling back to Tampa until I can eat a square meal.

Now I just have to think of what that first truly square meal will be? Seafood of some description I am sure.

Life is good.

Ian

PS: for friends of Patrick, be sure to get to the PEI Jazz and Blues Festival, especially Friday September 25 at 7:30pm. His quintet Field Trip open the evening. He launches a new CD that is nothing short of fantastic. Also - look up Aszure Barton on You Tube, and see the incredible choreographer he has befriended (+++)

I

There are no words to describe this spectacular news

2009-08-27T08:48:00.002-03:00

The power of modern medicine, superb care, a wonderful new drug, the energy of so many enveloping me in a blanket of love and prayers, all has come together.

Wednesday, August 26th, 1100am, I underwent a CT scan, the first since I was diagnosed with stage IV metastatic melanoma. I had an 8 cm mass beneath my liver, and a dozen or more spots in the liver in June.

The new CT shows absolutely spectacular improvement, with an 87.5% reduction in the volume of the mass, disappearance of many of the spots in the liver, and similar shrinkage of the rest.

This is a picture in time. The drug continues to activate my own immune system, which has taken me so far in 9 weeks.

I still have unresolved colitis, now being treated with complete bowel rest. I am allowed sips of fluid, and my treat - some Werther's candy. I am on IV feeding through a wonderful little tube that goes from my upper arm inside to above my heart, where the high calorie food can be delivered. I hope to arrange for this to be given at home. With two MD's, one a pharmacist, it should be straight forward. Joan gave my IV interferon in our own 'home oncology clinic' two years ago, so this should be a piece of cake (I wish it were a piece of cake, or a lobster, or ....).

As you can imagine, this turn of events has exceeded any dreams I allowed myself about the CT findings. I have a disease that by statistics, had an 80% mortality. These numbers are no longer relevant. The relief I felt is beyond description. I had prepared myself for any of the three outcomes, at least I thought I had. I had no idea of the dimensions of the worry, fear and anxiety that I carried unknowingly awaiting these results. It all got freed from the little corner where I had stuffed it, building high pressures I suppressed well.

? The future? I will be returning to Tampa sometime in the fall. As long as there is encouraging progress on regular CT's, I will not likely have any further treatment. My own Tcell immunity continues to work. If the CT's become less reassuring, there are several good alternatives to consider - but that it well into the future.

Today, I celebrate. I work out in physio on their exercise machines. I look forward to my 4 hr 'get out of jail' break away from the hospital, off TPN, to be with Joan.

To the so many of you that have helped us, food, visits, cards, calls, emails (dr_i_reid@hotmail.com), prayers, gifts and other gestures of love and kindness, thank you, thank you, thank you.

I know that the spirit, the positive energy that has come from all of you has lifted me, carried me, consoled me and strengthened me during this time. Call it the spirit of our God, our creator, the Holy Spirit, the energy of our souls, whatever you understand it to be, it has been with me.

Thank you.

Ian

The fight goes on

2009-08-23T20:37:00.002-03:00

Well, after almost four weeks of colitis, with three false starts towards discharge, the next step is needed. I will be on total bowel rest for a week. This means only sips of water, nothing else, with what is called TPN (total parenteral nutrition). This means meat, potatoes and lobster in a liquid. This should allow my colon to finally heal. To have a day not punctuated by meals is very odd. The natural rhythm is gone. However, I am sick of being sick, so whatever it takes.

I am up and mobile, walking the halls when visitors are gone, doing exercises and stretches in the room. My weight is back to my wedding weight, around 216lbs. I am regaining energy, and steadily starting to feel like myself. I had a therapy visit from Razor our Welsh Cardigan Corgi today. It is such a lift to see him. He was very good, and charmed the nurses.

Pat is here from Toronto for a few more days. Steve is home and doing courses at UPEI to prepare for a med school application. Dave is back in Montreal today. Pat will be back in a month for about 10 days, while his band Field Trip launches their terrific new CD called No Destination. It is truly great. They are the opening act on Friday Sept 25 at the PEI Jazz and Blues Festival.

Joan is holding the fort at home. Pandemonium at times. Two off to Montreal, painting the house, gardening, preparing for Hurricane Bill, looking after me, - a heavy agenda.

I will not likely get the drug I started with again due to the colitis. However, it remains active in my system for months or more. There are other options available if need be. I have a CT scan in a week to reassess things, after the colitis settles. There are three possible outcomes: it looks better, it looks the same, or it looks worse. In any case, it does not tell the entire story of this drug and its effects, which can be delayed for months. It is just a photograph in time. Of course improvement is what we all want, but it will be what it will be.

You may not recognize the new more aerodynamic me. Trim tummy, tight butt - jeepers I might be hot! (Kidding).

All for now. Thanks to all of you for your continued support. I do appreciate the emails, they come to my Blackberry, I read them when I can, and they break the monotony. (dr_i_reid@hotmail.com).

Ian

Out of the hole

2009-08-17T19:40:00.002-03:00

I have been in hospital with a severe colitis since Wednesday August 5th, when I came in unable to eat or drink. The colitis was due to the cancer therapy, and had arisin over the previous two weeks while in Tampa. Only with the help of high dose IV steroids and a miraculous drug called Remicaid, did the ship get turned around. I have lost 25 lbs, and been left shockingly weak. However the colitis is resolving, I am gaining weight, and inching forward, painfully slowly. Two or three walks of 30 - 40 minutes a day are all I can muster at this point.

I have not been receiving visitors due to the profound fatigue. However I know that many of you have been supporting us in so many ways, to many to mention. You know who you are, and thank you!!

Not sure when I 'll get home to stay, soon I hope, but not before I should. I gave up control of this ship a long time ago.

Ian

Ah Shit

2009-08-07T18:11:00.003-03:00

Forgive the vernacular. However, the past three weeks have been nothing short of miserable. I have developed a severe colitis due to side effects of the drug. I am currently in hospital at the QEH, improving on hydration and rest. The bowel trouble has been extreme, with frequent episodes of dehydration, high temperature, loss of appetite and energy. My third dose of the drug was cancelled due to these symptoms. When we arrived home from Tampa, I was admitted the next morning. I couldn't eat or drink, had a fever, and felt awful. After several litres of IV fluids I began to improve. By the next morning I was able to eat and drink. I then had to be on just fluids until this morning when I had a sigmoidoscopy. It showed what we knew - a severe colitis.

I will stay in hospital for a few days to rest, and restore my energy. I was shocked when I was weighed. I lost 25 lbs in the past three weeks. I haven't been this weight since I was married.

I will not likely get the next dose scheduled for a week from today (Aug. 14th.), unless the bowel settles down virtually completely. More likely is that I will be placed on a month of steroids, and not get further ipi, at least for some time.

On a positive note, the severe colitis, and severe rash show a major impact of the drug on my immune system. Hopefully if the drug is beating the hell out of my skin and colon, it is also doing the same thing to the tumours. I get imaged at the end of the month, and we will see what has been accomplished. That will be a scary day.

Steve has come home, and will be doing courses at UPEI this fall and winter. It is great to have him near, as he has spent little time at home in two years. Pat will be home for 10 days on the 18th. David returns to McGill on the 23rd.

A week after the second dose I felt well, other than a little fatigue. The past three weeks have certainly convinced me of the power of this drug. It is not to be taken lightly. The difference from typical chemotherapy is that the adverse effects can show up any time, and often after several doses, or even months after induction.

I have to say that I have been scared. To lose this weight, feel so unwell, with symptoms worsening on the standard treatment, was frightening. However, I am substantially better, and am a bit more optimistic.

Many people have shown their kindness and concern in so many ways. We are fortunate to be surrounded by so many caring people. Thank you to you all - you know who you are.

You can now understand why the delay from the last posting - this is the first time I have felt well enough to get on the computer.

Best wishes,

Ian

Storm cloud - hopefully with a silver lining

2009-07-28T12:15:00.002-03:00

Well after landing in hospital for two days, recovering for two days, we arrived Sunday the 26th in Tampa. I went to the Moffitt Cancer Centre at 0700 for blood work, and saw Jeff Weber MD at 0800. He took careful note of the adverse effects I had experienced; the extensive maculo-papular rash over 50% of my body, the recent septic like presentation, and most importantly - the diarrhea with BMs at least 6X per day. In his usual matter of fact style, he said: "You are really past the limit of safety for me to treat you today Ian. You would be at a high risk of a possibly life threatening colitis. You have had an extensive immune reaction to this drug. We should cancel this treatment and go ahead with #4 on August 14th." In fact, he said he wouldn't treat me even if I put a gun to his head. I told him that we don't have many guns in Canada - and he laughed.

I came back to the hotel, and proceeded over the day to poop myself silly. As disappointed as I was not to hit this disease again, I knew that his decision was the right one. He also told me not to be too disappointed, that I was having a powerful response, and that this was an encouraging sign.

Well, Joan and I will have a week to rest, beach walk, tour around a bit, and reconnect. It is all good.

Shalom.

Ian

A Major Pothole!

2009-07-24T12:00:00.002-03:00

This week threw a major twist in the plans. The diarrhea got worse, requiring three different medications and advice from Tampa. Wednesday I awoke with chills and rigors. My temperature rose to 39.5 degrees C (104 F ) . I was instructed to go to the hospital. I underwent an extensive septic workup. When I got there my BP was 120/55. Within two hours it dropped to 93/50. I received extensive fluids, antibiotics and within two hours my pressure was almost normal. My fever did come down with high dose ibuprophen and acetominophen. There was brief talk of an ICU admission. Fortunately things stabilized, and they accepted my request to be on the surgical unit with staff most familiar with me.

The care I received was second to none, seasoned with expertise, great attention to detail, and love. My oncologist, Ashley Davidson was here for a locum, and cared for me. He was terrific. He received advice from Dr. Weber several times, and was reassured that this kind of reaction can occur with ipilimumab, and that an infection would be unlikely. However, until the cultures of blood, urine and stool came back, I would be treated for a widespread infection.

Fortunately, within 48 hours, I felt much better. The fever resolved. The diarrhea is settling, and I am released to go home. I must however be in Tampa by Monday (three days) in order to continue in the trial. Joan has spent hours cancelling then rebooking accomodation and flight arrangements, as well as attending to me. God bless her.

I certainly now am totally convinced that ipi is a powerful drug. I just hope that it is changing the cancer as it gives me plenty of side effects.

Now, if Joan could only get here with some pants, I could exit the hospital with some dignity.

Blessings,

Ian

Tampa bound

2009-07-19T21:11:00.002-03:00

Just a few days left at home before Thursday when we fly to Tampa yet again. This time it is for 10 days, coming home on the 2nd of August. There are a series of specialized blood tests that are a mandatory part of the study that will keep us there that long. Then two more 36 hour round trips on the 6/7 and the 13/14th, then I AM DONE. At least until the imaging two weeks later to see if the treatment has made an impact. Needless to say, that will be a watershed moment.

People have been so kind. Good friends dropped in for a picnic today, and brought everything including the dishes! Another friend dropped by with a casserole, another with a plate of sweets. I got at least a dozen hugs at church today. One was from a friend who has her own cancer surgery this week. I am promised a personal concert from 'Rising Tide' soon. I insisted that Susan also plan to play on my organ (B3 you clowns) . Whether it is with comments on the blog, emails, or gestures like the above, the circle of support is large. It is at times like these that kindness of others means so much.

Steve is home for a while. What a gift to me. We flew a stunt kite together today, a present from him and David. What a rush! I have had a few cracks at Doug Riley's Hammond B3, and am so excited to learn more. It is a remarkable instrument. I am glad that all the friends and neighbours in the area like music, as turned up full, it will entertain a 5 block radius.

I am in a good state of mind and body. Pain is minimal. I am rather fatigued, down to 50% likely.
I have a 'happy rash'. This rash over much of me is a reaction to the ipilimumab. It has been shown that the results of the treatment are twice as good if a reaction like this occurs. I even have some diarrhea - a second adverse effect (too much information??). At least I know something is happening.

Thank you all for your love and support. I have cancer, but cancer does not have me.

Ian

Life is the same, but it's not

2009-07-11T17:30:00.003-03:00

I knew there would be moments, moments when everything on the outside looks the same but it doesn't feel the same. Moments when thoughts are unclear, can't be put into words, and therefore are not easy to share with anyone. Thoughts that hurt somewhere, everywhere but I can't put a finger on the spot. Fatigue but sleep doesn't come easily, and doesn't fix it. This will pass. I am not depressed - I know this all too well. It is like living live in suspended animation - I feel well, but I am not. Everything looks wonderful - but its not. It is very strange. Everyone close is suffering in their own way, want to help, but can't always.

This is some journey.

I'm going for a walk on the beach - Island psychotherapy.

Ian

Home Sweet Home - for two weeks at least

2009-07-08T15:13:00.002-03:00

It is only after being away, rushing around large cities, that one realizes just how fortunate we are in PEI. There is a peacefulness that surrounds me when I get home. I am certain that my blood pressure and heart rate drop when I am finally home.

The time in Toronto was wonderful. Patrick's Field Trip gig at the Rex was incredible. The place was packed right through from 11:00 pm until 2:00 am. I caught a second wind thanks to the energy the band created. Pat had composed much of the music, and I was hearing it for the first time. I was so proud of him. The music was fantastic. Take note, they will be here at the Jazz and Blues Festival in September - check the out.

We went to the Sound of Music Friday the 3rd. Elicia Mackenzie, who played Maria, was absolutely incredible. My favorite movie of all time is the Sound of Music. I didn't think that anyone could match Julie Andrews, but she did. If you have any chance to see it - do it. It was truly fabulous.

Pat's gig was the Saturday night. I can't believe I stayed up and was full of energy at 3:00 am. Sunday afternoon, we saw the Jersey Boys. It met the expectations from all the hype. It was such a great tight production. The energy was in the stratosphere. I forgot just how much great music Frankie Valli sang.

Home Sunday night - rather exhausted. It has taken a few days to recover. Pat came home for a week. Unexpectedly, he brought a friend, Aszure Barton, a lovely bright and talented lady he met in Banff. Try Googling her - she is a very hot ticket in New York as a choreographer. Also, she grew up four blocks from Joanie, and went to the same school!

We also met Scott, a young bassist from McGill, who lives with his two physician parents and two brothers in New Hampshire. He is therefore right at home here. He will be here for the summer playing with Dave on Victoria Row.

We also had a great arrival Tuesday - hold your breath - we obtained the Hammond B3 organ that belonged to the late great Doug Riley, Dr. Music. It is incredible, with a wonderful sound that when cranked up entertains the ten blocks around us. I am hoping to learn some basics to play it. You may know that these are not manufactured anywhere, anymore. They are a remarkable piece of engineering, with many wires, tubes and cables throughout. Modern manufacturers have tried to duplicate the sound, without success at least in Doug Riley's mind.

How am I? Well, no pain. Energy still a little low at 70% (which my sister and others consider normal for others). In the quiet times I look at my abdomen wishing I could just look inside for a minute, check that things are improving. On the other hand, the actual imaging scheduled for day 78, or around August 27th, will be a day like no other. If I am improving, I go on a maintenance program of infusions every 12 weeks long term (at least I might get to Florida in the winter). If I am not improving, or the cancer is progressing, I go on another study of PLX 4032. Who's in control now? Certainly not me.

You know, we spend so much time and energy trying to get our lives 'in control'. When something like this happens, I realize that a sense of control is just an illusion, or even a delusion.
It is however a relief in some ways not to have to struggle to be in control, to be in charge. I cannot recall the last time I was angry. I just have a sense of peace. I just do the best I can, hope for the best, but I am not in control. You know, I don't even think God is in control, not in the sense of being the 'Director' of this drama. If he/she is, then God gave me the cancer, willed that Chris Driscoll would die hitting a tree skiing, or innumerable other terrible things. If that were the case, we would all hate our Creator. I don't pray for a cure, as this outcome would not be the result of a decision by God, anymore than my getting the cancer was. Instead, I just thank God and the many others around me that provide support, walk with me, and occasionally cry with me. If you cannot steer the boat, you can just relax and enjoy the scenery as best you can.

Enough of the heavy stuff.

Thanks to all of you for the incredible support. God give strength and comfort to Thane and Kathie McNally who are on a similar journey. As Scar, the evil lion brother in the Lion King said,
'Life's not fair'.

Blessings,

Ian

Two down, two to go

2009-07-03T10:26:00.002-03:00

Well, I have had the fastest trip to Florida of any Canadian - less than 24 hours in Tampa. The second treatment was quite uneventful. Interesting , I had several conversations with people interested in the Canadian health care system. Many were terribly misinformed. Many did not realize how poorly their system cares for their citizens, and how expensive it is. Just FYI - if I had no courtesy discounts, no provincial health coverage or third party coverage, the cost of my therapy would be $321,000 US! Imagine. Don't worry, the main costs to me are travel and accomodation.

Now in Toronto for a little fun. The Sound of Music tonight, Patrick's group Field Trip at the Rex on Saturday night, Jersey Boys Sunday afternoon, visits with Lawrie and Jen Rotenberg today, my sister Sue tomorrow. Life goes on.

I am feeling well, a little fatigue, about a 7/10 on the energy scale, but NO PAIN. Thanks Mirelle! Fentanyl patches are great.

Just read The Shack. It is a story of a man who recounts his encounter with God during what was a near death experience. A bestseller. If you would like Christianity simplified to its fundamentals, stripped of the many man added debris that complicates and contaminates it, this is a good read. Not for everybody.

Thanks to all for your emails and comments. Great to pick up my Blackberry and hear from you.
Prayers for Kathie McNally and Thayne - cancer does not play fair.

Love to all.

Ian

Tampa #2

2009-06-30T10:45:00.002-03:00

Tomorrow I fly to Tampa, alone, for treatment #2. I am in a good state of mind. The melancholia from the weekend has gone. Energy is a little down, with some dizziness due to the high dose gabapentin and higher doses of fentanyl. But - no pain, a blessing.

Support from all directions keeps coming. Too many acts of kindness to mention - but all appreciated.

Things to look forward to - the Sound of Music on Friday in Toronto, followed Saturday by my son Patrick's gig at the Rex, and a Sunday matinee of the Jersey Boys, then home.

Two old classmates got in touch. A dear old roommate also did, and is coming in August for a visit. Rhubarb pie arrived at the door this morning. I haven't had to make dinner in 5 days.

I am going to meet with the Deputy Minister of Health and the Health Minister this month. I cannot be accused of having a hidden agenda or self interest when I present some thoughts after 22 years in PEI medicine. I live in naive hope that some things might change, sometime.

Love to all, and thanks for your support. It means a great deal.

Ian

Energy - a little low

2009-06-27T19:54:00.000-03:00

Well, I guess it had to happen - the energy level is down, mild melancholia I guess. It would be rather unrealistic if not unhealthy for this not to occur. Today I didn't have much initiative. I actually found myself a bit emotional glancing at the obituaries in the paper. Two people younger than I am are mentioned. Three paragraphs or less. Not much. I wonder if I would get three paragraphs..... Oh stop this Ian!

Candice, a previous neighbour arrived from Texas, and came over for a visit. One of the most courageous women I know. A lifetime of juvenile rheumatoid arthritis. In pain almost every day. So much destruction of her joints that opening a bottle of water, starting the car or getting in a bathtub, are almost impossible. Yet positive almost all the time. She will tell you that she has moments or days like I did today. As I used to say to Joan or the boys when down a bit - "It won't always feel like this." or as Joan's dad said - Joanie - tomorrow's another day.

Another friend arrived with wonderful homemade soup, enough for several meals out of the freezer. She stayed for a nice visit. Then a young man, a minister, and now an army chaplain called for a great chat. I knew him as a high school student, as a candidate for the ministry, as his chosen support during discernment for the ministry, and now, as an outstanding chaplain to our military.

No - it will not always feel like this. Today's small acts of kindness from friends help assure that this is so.

Ian

Lessons from a friend

2009-06-24T16:39:00.000-03:00

Today I a friend took me out for lunch. He has a great sense of humour. He is a craftsman, doing wonderful things with wood. He works full time at his profession, just because he loves it. He has a joy in living. He has seen much in his many seasons of life.

Years ago, he was in hospital for most of a year. He almost died, and at one point gave up. With the help of another he regained his spirit, fought on and survived. Later, he lost much of the use of one arm, and suffered severe relentless pain. Now, with some creativity he does almost everything he wants to do, and with joy, a laugh and a smile.

Life is a journey, not a destination isn't it. My friend has overcome many adversities, stared at death, fought on, and lives now a life devoid of anger, or anxiety. He even finds time to take someone he only knows a little, out for lunch. We now know each other much better, and I am the better for it.

Thanks! You know who you are.

Ian

Home - for a little while

2009-06-23T10:14:00.000-03:00

I arrived home from Montreal Thursday evening, met by David and the two dogs. This was a different arrival home, as so much has changed. I didn't have to put the pager back on, no hospital or office messages to triage, no saddle to climb into the next morning.

When we got home, we discovered that all our window boxes had been planted (thanks Nora and grandson). We found a beautiful angel in the garden (thanks Gary and Natalie). Our dogs had been cared for in Eastern Dawn Kennels (thanks Steph and Wayne). Food had arrived (thanks Lynda, Mom, Sharleen, Mary, and others).

I was so pleased to find some three dozen or more cards from friends, family, colleagues and patients waiting for me, as well as 18 telephone messages and a number of emails. I cannot thank each person individually, but you know who you are - thank you so much. Your expressions of love, caring and concern remind me that I truly am not alone.

I was in church, in the choir loft on Sunday. It was like being with my extended family. I got more hugs Sunday than I can count. Many were comforted to see I look well.

I have had a bit of a challenge in getting the upper abdominal pain to settle completely. I visited with Dr. Mireille Lecour on Friday. She made several suggestions that Joan and I implemented. Joan was reassured that her thoughts and Mireille's were similar - though Joan is happy not to play the role of a doctor in this situation. I am on a Fentanyl patch as well as gabapentin. This seems to keep the pain at no more than a 1 or 2/10. However, when the dose went up on Sunday, I had the paradoxical hyperstimulation - like 6 cups of coffee, and couldn't sleep. Heavy doses of a sedative helped, but kept me feeling drunk much of the next morning.

Sunday was Father's Day. My 81 year young dad was here, as well as my mom, Joan, David and our minister Bill MacLeod. It was a great evening. Joan and Dave gave me cards that were powerful, brought a few tears, and are keepers. Steve and Pat called from Montreal too, as did my two sisters Sue, and Carolyn.

I leave next Wednesday, July 1st for Tampa. Treatment July 2nd, back to Toronto that night, The Sound of Music Friday July 3rd, and Jazz at the Rex Saturday the 4th. Patrick and his quintet Field Trip are on stage that night. I am pumped to see them. They will be presenting music from their new album to be released in the fall. Almost all are Pat's compositions. I have heard some of the tracks - it is great music.

I am in or in touch with the office as there are a number of loose ends to clear up. Shutting down a busy practice is a challenge, to make sure that all people's needs are tended to. Mike Mulligan has been helpful in picking up the urgent cases.My staff Cathy and Carla are wonderful.

A friend sent info on ipilimumab - the drug I am on, showing dramatic effects in early studies in prostate cancer. 'Bring it on'.

Once again, thank you for all your expressions of love, care and concern, and for the many thoughtful gestures of kindness we have received. This is a long journey. We will know about the possible benefits by mid August when the first imaging is done. There are several other roads that might have to be travelled. I am living with cancer, not dying of cancer.

Blessings,

Ian

Home again, for the first time

2009-06-18T06:44:00.000-03:00

Today I return home, after the first chapter of what may be a long story. I have met my new oncology team, had my first treatment with a promising experimental drug and spent a few precious days with my two oldest sons in Montreal.

I continue to have some problems with upper abdominal pain, usually a 1 or 2/10, but occasionally a 3 or 4, and rarely a 6 or 7. Two years ago I was on no prescription medication, now I am on seven. Fortunately I have had no adverse effects from the ipilimumab, although I would welcome some - as the best results are with those with at least some 'immune adverse reactions' like diarrhea or a rash.

The time with Pat and Steve in Montreal was precious. They make me so proud to be their father. It is so hard to say goodbye this time with so much uncertainty. My fears of the future bubble to the surface most often when I think of my sons.

I have been comforted so much by the many expressions of compassion, care and concern from so many people. I check my Blackbery often, and have received countless emails from friends, nurses, patients, relatives - some I barely know. It is amazing after 23 years of practicing medicine how may people have shared time with me on this life journey in some way. It is humbling to see that for some these experiences have meant a great deal.

Interestingly, and a cause for pause and contemplation, the response from colleagues has been very limited. This is not a criticism, more a reflection that makes me pause myself. How many times in my career have I shied away from expressions of support or compassion for a colleague who is no longer working due to illness. I can count on the fingers of both hands colleagues that faced or succumbed to serious illnesses, or struggled with mental illness or addictions, marriage breakups and other challenges. I need fewer fingers to count those of these to whom I reached out in a meaningful way. We as physicians are a strange breed. At times we do not have tolerance for 'weakness' or limitations in our own. We show professional compassion for our patients, but not our colleagues. We live in the illusion that collegiality means true friendship. We may see human weakness in our ill colleagues that raises the reality of our own humanity and frailty we prefer not to acknowledge. However, when we are in the Johnny shirt on an examination table, afraid and no longer in control, we rejoin our patients in the human journey. This I know with certainty.

I look forward to being at home. My youngest, David, has managed alone for two weeks, after only a couple of days to comprehend the massive changes in his and his family's life. He has been surrounded by much care and kindness however, and was certainly not starving or lonely.
I look forward to watching him perform on Vic Row each supper hour when I can, and sharing some meaningful time together. Hopefully my 81 year old dad and I will get out on the ATV's like we have many times. Joan and I will be buying bikes to replace ours stolen in the past. I have a huge list of books to read. (Try 'A Thousand Splendid Suns', 'The Audacity of Hope'or 'For Christ's Sake' ).

I am back to Tampa in two weeks, five and eight weeks. Only after that will the CT, MRI, and other tests be done to see what has been accomplished. Even then only hints may be revealed.

I will be in Spring Park Church on Sunday. The wave of love and care from my fellow church members has been a blanket of comfort. I know I am not alone.

Thank you to all of you who in your own way, your emails, your blog reading and comments, your prayers, your care for David, and other ways too numerable to mention, have shown your love and care. It means a great deal.

Ian

A few days in Montreal

2009-06-15T19:04:00.000-03:00

It has been great to see Pat, Steve and Alexis, and to 'hang' for a while. We are rather tired at this time. So much has happened it leaves us trying to catch up and understand - not just intellectually.
This is such uncharted territory. I have been on the opposite side of the desk with patients facing possibly lethal disease so many times. Now I know just how unreal this is, and how slowly one can take it in.

Facing one's own mortality, at a time so much earlier than ever expected, is almost an impossible exercise. Knowing intellectually that some things could be 'the last time' is just beyond comprehension. At the same time, I am quite determined that I will beat this damn thing. If so, I will be transformed by the experience, which many never face. I look forward, days or weeks at a time, never longer.

Simply being with those I love, doing simple things we do every day, is so important. I am living, and certainly not dying. I will face what I must, when I must. The future will be when it will be. All I know for sure now is that I will be in Tampa on July 1st for treatment July 2nd, followed by a treat - watching Patrick play with the stars at the Rex on Saturday the 4th of July. Get this, he and Field Trip follow the Murley Braid quintet. Have a look at myspace.com/fieldtriptrio to check them out.

Thanks for all the emails and comments - they lighten the day.

Ian

Partway home

2009-06-13T01:24:00.000-03:00

We arrived today in Montreal, leaving Orlando with its 95 F heat. We were tired, but delighted to be closer to home. We will be able to have a visit with Steve, and Patrick who arrives here from Alberta, tomorrow.

Other than some mild abdominal pain most of the time, which I can usually ignore, I feel fine. Without the pain, I would think that nothing is wrong, and I should just book an office and an OR list for next week. However, I know this is not to be. I will be back in Tampa in two weeks for treatment #2, and every three weeks thereafter for a while. I will have imaging done after treatment #4 to assess things. With this treatment, responses may be delayed for weeks or more. It is hard to have the future so uncertain.

We are just enjoying living each day, one at a time. It will be great to be with the boys for a visit, and then home again.

I sincerely appreciate the emails and postings from so many friends, and patients. They mean a great deal.

Ian

Wednesday June 10th

2009-06-10T21:47:00.000-03:00

Today was an R & R day. We didn't set any alarms, and started about 1000. The boys would not be impressed, as we are at Disney. We spent the day at Disney Hollywood Studios, formerly Disney MGM Studios. It was rather hot, with a good crowd, so pooped out around 6:00 pm. We took a nap with good intentions to resume activity, but it looks like watching the NBA finals will be as active as we get.

Still a bit sore at times, but not all the time, and not always noticeable. Definitely not noticeable watching the new auto stunt show that we saw. Unbelievable. As usual, the closing at Epcot last night was also incredible.

We are off to Montreal on Friday. We tried to get home before next Thursday, but our beloved Air Canada wanted over $650 one way each to get there, so we will be staying a few days. It will be great to have some time with Steve and Pat. Pat returns next week from Alberta, after playing for Prince Harry at the Banff Center, and seeing his grandparents in Edmonton.

For those that know, we always have Eeyore with us, a cuddly soft pillow sized fellow that joined Joan when she was in hospital, sleeps with us, and has borne many a trouble or a tear. Well, we found a lady Eeyore - whom we call Lucille, and a little fringe benefit - or as Eeyore calls her - Luc-ee', so we now have a donkey family in the bed. Just as we have an extended family, now Eeyore does too.

Blessings,

Ian

Some changes overnight - ?comforting pain?

2009-06-10T07:31:00.000-03:00

Overnight, I developed a major increase in the pain in my lower chest and upper abdomen. I had to get up and take a major dose of the combination of ibuprophen, gabapentin, and percocet that my resident pain expert - Joanie, had recommended. Within half an hour the pain went from a 6/10 to a 1/10. Now, five hours later it remains mild.

This is the first increase in pain in some time. A reasonable and positive interpretation of this, happening 18 hours after the first treatment is:

1) there was some activity in the tumour area - possibly due to early treatment effect

2) the pain is now in my control - in that I can manage it if it gets troublesome - a big comfort let
me assure you.

Now - off to the Magic Kingdom.

Ian

First treatment - not bad

2009-06-09T23:48:00.000-03:00

One down. I had my first IV ipilimumab today, at the Clinical Research Unit of the Moffitt Cancer Center. I needed blood work at 7:15 this morning, met with the nurse practitioner, the study nurse, then got the medication over 90 minutes. So far so good. I am a bit tired, some loose bowels, but overall did fine.

We left Tampa, and drove to Orlando. We got a deal at the Disney Dolphin Hotel, settled in, had a bite and walked around Epcot. It was a beautiful evening. The spectacular light and fireworks show
Illuminations of the Earth was a nice end to the day.

I am back in Tampa in three weeks and in six weeks to do it again.

We will be travelling to Montreal on Friday, and will stay until Pat returns from the west on the Tuesday to see him. We will be home in PEI on Thursday.

Thanks to all who have left blog or email messages - they are really appreciated.

Ian

Something in the wind

2009-06-08T04:31:00.000-03:00

It is 0300. Something has changed. I am almost pain free for the first time. I have an energy that I have not felt for some time. I saw the most beautiful rainbow last night en route back from Clearwater beach - huge, bright and spectactular. I had a great chat with Stephen in Montreal and Dave in Charlottetown last night - it felt good just to be a dad, as we talked about them, not just about me for a while.

I received emails from many people yesterday, photos, jokes, and some touching comments that shared our humanity. I met a man in church who lost two of his closest friends in two days last week, and a man who has already outlived his cancer prognosis by a year. Our humanity is revealed only when we need each other. We need each other only when we realize we cannot be in control, and we taste some vulnerability and some humility. That is when we build a community that needs faith at its core. That is humanity at its best.

It reminds me of the story of a man who complained about not having any shoes to wear, until he met a child that had no feet.

I hope to fly to Montreal maybe Thursday, and leave there Sunday, in order to see Steve and Alexis.

I can fly from Toronto to Tampa for my early July treatment, return in a day, and still catch the Sound of Music on the 2nd, and Patrick's performance at the Rex on the 4th.

Looks like the Lakers in 5.

I am not my disease. I feel ready for this process. Onward and upward.

Ian

Sunday June 7th

2009-06-07T15:28:00.001-03:00

For all that are not up to date with the medical details, please refer to the updated introduction.

I went to the United Church of Christ today. The service was just like being at home. The music, the message, the communion and a baptism were all comforting. This is an affirming church that is committed to progressive social action.

We are off for a walk on Clear Water Beach this afternoon, followed by the NBA finals tonight. Blood work tomorrow am. Hopefully home by week's end.

Ian

Message to Friends -

2009-06-06T16:22:00.000-03:00

Hi folks. If you would, register as a friend so I can know who checks the blog from time to time - it helps to know the width and depth of the circle.

Ian

Our 28th Anniversary

2009-06-06T16:15:00.000-03:00

Joan and I celebrate our 28th anniversary today. We will be at a lovely restaurant called Mise en Place here in Tampa, recommended by Jeff (Dr. Weber my oncologist).

Good things of today: they found a week of time here in our hotel at $129 per day, in spite of the hotel being sold out. King bed, and a big hot breakfast (my mom weaned us on a good breakfast).
People at this hotel could not be nicer - they bend over backwards for Moffitt Cancer Center clients.
We rented a car - no car for our request, so upgraded to an Eddie Bauer SUV with all the toys, for the special sale rate. Now we can explore in the next two days we have free, and for a few days after the treatment Tuesday. Not likely to be too sick next week.

Bad things: the pain in my upper abdomen is occasionally 'a pain', and does remind me this is not a holiday, and is very real.

Onwards and upwards.

Ian

I meet the team at Moffitt Cancer Center

2009-06-05T21:05:00.000-03:00

Today I entered the world of cutting edge medical research, at the Moffitt Cancer Center (US spelling of centre). I met Marianne, the international patient liason, Ivanesse in the business office, Jorge the intake officer, Sue the research nurse, Marie the clinical research unit nurse, and of course, Jeff Weber (MD, PhD, FACS Director of the Melanoma Research Program). Each could not have been warmer or friendlier. I was not alone for the four hours it took to go from civilian to the last patient into the phase III trial of ipililumumab.

This drug is actually an antibody derived from - get this - a hamster ovarian cell line. It is a human immunoglobulin that causes a reduction in the production of a cellular chemical called cytokine. This can make the T cell (white cell) attack on the tumour more effective. Dr. Weber - or as I call him, Jeff, has treated more than half the recipients in the world who have received it. He has had some remarkable results in what were virtually hopeless situations that had failed other therapies.

This drug is given every three weeks, intravenously, over 90 minutes. Blood work is necessary an hour before and after the treatment. It can only be done in Tampa. Side effects include fatigue, rash, some bowel issues, and some rare problems. Jeff thought I could consider some work in between treatments. He was astonished that I worked 4 days a week on the high dose interferon.

On the last treatment I need to be here for a week for a series of tests. Results are not usually seen for up to 12 weeks from the start. Some dramatic results have been delayed for many months beyond this. In fact, the whole definition of response had to be changed by the World Health Organization as a result of trials of this drug, as cures developed a year later, even after showing initial progression. This is a great contrast to chemotherapy definitions of cure.

I will not have any imaging to assess response for three months. This can and will be done in PEI.

Assuming my repeat blood work Monday is OK, I will have the first treatment Tuesday.

Plans for return to PEI are not clear yet, depending on how this goes. In the meantime, Joan and I will celebrate our 28th wedding anniversary tomorrow, on the beach.

Ian

2009-06-04T18:43:00.000-03:00

June 4th, arrived in Tampa at around 1:00 pm. Weather here is warm, 32 degrees C, and humid.

I spent the flight reading articles on ipilimumab, this immune modulator that Dr. Weber is evaluating. It is a trip into the little immunology I know. This is a human immunoglobulin - an antibody, that attaches to T cells, a kind of white cell, and blocks the production of a cell product called cytokine. This drug has mild to moderate side effects, all manageable with steroids. Those with these iMR's or immune mediated reactions also have the best results. The results of this drug often do not reveal themselves for 12 or more weeks, and sometimes things look worse before they lo0k better.

Some of the studies showed examples of CR - or complete responses, in patients with horrific disease, much greater than mine.

The details of my course of treatment will become clear tomorrow. At this point it appears that I will make four trips to Tampa about three weeks apart. Too bad it is the summer, not the 'Spring' that we are supposed to have in PEI.

Love to all.

Ian
We start at the clinic tomorrow 0800. I meet Jeff Weber at 0900.

Wild Day - full of anticipation and some hope

2009-06-03T23:01:00.000-03:00

I started the day on the internet, receiving an email from Dr. Jeff Weber in Tampa Florida. He is the principal investigator in a 1000 patient trial of a promising drug. The study was closed, but one patient withdrew, and there was one slot open. He offered it to me, if I could be in Florida by Friday morning. I consulted two other of my contacts in Toronto, and in Detroit, who both agreed I should go for it. This study has yet to report early results, because there are not many 'events' yet. That means few have progressed or died, so many are doing well. It is outpatient treatment, requiring a number of return trips to Florida (tough eh) but no hospitalizations. The drug is paid for.

I packaged up all my medical data, imaging studies, lab reports; Joan and I packed in hurry, found $59 tickets from Toronto to Tampa, and got the last seats on a Westjet flight to Toronto.

Jeff is a great fellow, very knowledgable in melanoma, with a good sense of humour. I asked him in jest, how many pairs of underwear I should bring. He said, it depends how often you change them. I replied, in Canada - once a week.

I expect to be back in PEI within a week. The details of the plan for the next few months will be made clear soon enough.

If this treatment works well - fabulous. If not, there are several other options that are available including interleukin 2, interleukin 21, and aggressive treatment in Bethseda Maryland with liver infusion and surgery.

This will be a long journey.

We had lobster for three nights in a row - so we have a good PEI taste to remember.

Good night all.

Ian

Medical update to Tuesday June 2nd

2009-06-02T21:59:00.000-03:00

I spent the day on the phone and the internet. It is amazing just how rapidly one can communicate with experts, and get information. I have been in direct contact with the melanoma experts at Memorial Sloan Kettering (NY), NCI (Bethseda Md), Princess Margaret, Moffitt Cancer Centre in Tampa, and Wayne State in Detroit. It does not appear that any appropriate therapy is available in Canada. The most likely sites are in New York, or Bethseda Maryland. I will almost certainly be in a trial of new potential advances. I can always fall back on the traditional treatment options, also not available in Canada.

I expect to discussing things with Dr. Flaherty tomorrow, and hope to have the plan in place by week's end.

I feel well. Joan's advice to add gabapentin to treat the pain was a great one - it worked.

We are surrounded by kindness. I haven't made a meal in four days, and supper is planned for the next three. I have recieved over 80 emails in response to my group email. Too many to answer individually, but all read several times, and all appreciated.

I am not alone.

Ian

I will update things when the plans are more complete.