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Henry: April 20, 2003 – July 6, 2020

Posted on September 7, 2020 by islandviewsblog

Henry Genton-Nadler

April 20, 2003 – July 6, 2020

 

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Moving to Word Press

Moved to Word Press

 

Hi everyone. It's a while since my last post. I have moved my blog to Word Press and posted a new entry.

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Light The Night 2019

 Honoured Heroes

Every year the Leukemia Lymphoma Society a fabulous organization which supports blood cancer  patients and families, produces a fundraising event which consists of a lantern lit walk aptly entitled "Light the Night."  They usually have a survivor representing the event called the  Honoured Hero who is the inspiration for each local walk. This year they chose me! It was hard for me to wrap my head around this as I really do not feel like a hero by any stretch of my imagination.

However having lived for over eleven years with this disease and doing incredibly well, I feel like it is my partner Monique, our wonder dog Henry, friends, family, the Leukemia Lymphoma Society, BC Cancer, all my wonderful doctors and medical team, who are the real heroes! So to them I say thank you! I wouldn't be here today it it wasn't  for all of you! Also I am humbled by those who did not survive this disease or who are still struggling much more than I ever did. I salute you and walk in your honour. You are the bravest of us all!

Here's the entry on the LLS page promoting this year's walk in Victoria:

Peter's Story

I walk as a Survivor!

Victoria (BC/YUKON)

Submitted by: Peter

April 2019

" In 2008 after a routine blood panel Peter was diagnosed with CLL. He was told this was an incurable form of Leukemia and that it was likely to be aggressive and would not respond well to chemo. He was given about ten years to survive. Today more than eleven years Peter is doing better than ever, thanks largely to the great care from BC Cancer, support from the LLS and recent developments in novel treatments including iBrutinib. Peter lives in beautiful Victoria with his partner of 19 years and 16-year-old Whippet. Peter has worked in the legal profession with an emphasis on dispute resolution. Peter also has a background in acting, comedy, and film-making. Now mostly retired, he is active in the community with fundraising and Holocaust education. He is hoping to be more involved in theatre and story-telling.

Living with cancer is truly a journey and although it sounds contrary to popular belief, Peter considers himself lucky and enriched by having gone through this experience. Having met so many courageous patients, survivors and wonderful experts Peter wanted to express his gratitude by contributing. Peter is a First Connection volunteer on Vancouver Island, and has been fundraising for the LSS through the Light the Night Campaign by raising thousands of dollars.

Connecting with, patients, caregivers, professionals truly inspires Peter who hopes that one day there will be a cure for all blood cancers."

If any of you would like to sponsor me please see this message:

Dearest Friends and Family

I have decided to join the fight to end blood cancers by registering for the Victoria Community Walk 2019 Light The Night Walk.

I want to help find a cure for blood cancers and I want to give hope to all those families faced with a recent diagnosis.

Did you know that an estimated 138,000 people are affected by blood cancers in Canada?
That someone is diagnosed every 23 minutes?

I want to do my part to help change these statistics.

By participating in the Light The Night Walk, I will be raising funds to help The Leukemia & Lymphoma Society of Canada provide vital support services and information to patients at every stage of their cancer journey. The money will also go to the most promising blood cancer research taking place at cancer centres across Canada.

They say that when someone is diagnosed with a blood cancer, the whole community is affected. This is how I am showing support to those touched by this terrible disease in my community.

Join me in my quest to raise funds to end blood cancers by making a donation.

Your support is greatly appreciated.

Thank you!

Peter


Donate today at: https://secure.e2rm.com/registrant/FundraisingPage.aspx?registrationID=4434470&langPref=en-CA

If you would like to find out more about why you should donate, and where your valuable dollars will go, please visit the LLSC website.

If you would like to join me and participate in Victoria Community Walk 2019, visit www.lightthenight.ca to register.

Henry

Have you ever heard people say they like dogs more than people?

I get it.   I think dogs are people.  Let me explain….

 

Henry,  12 weeks old

The happiest day of our lives was about fifteen years ago when we brought our Henry, the amazing Whippet home to live with us. He's been a very special part of our lives. His qualities include not only loyal, loving and fun but intuitive, comforting, healing and soothing.  I am not sure if it's the breed or his unique genes or both but Henry has incredible empathy. He has always known when someone was ill, down or just needed comforting and love. No matter what he always gave fully of himself to help others.  That's unconditional love.

He was with several friends and family in their final days. He visited my cousin Irving who was dying from lymphoma, Monique's brother Joe,  my old business partner Greg and friend Ed who died from cancer.  He visited my father while he lay dying  on on his hospital bed. In fact one of my father's last words was:  "Henry!" as the lovable Whippet jumped on his bed and lay with him while my father gently stroked him, providing him with invaluable love and comfort.

 My father adored Henry, whom he often said was a human and not a dog.                           And Henry loved my father.

Henry visited my mother regularly while she was in care. He always made her feel better.

Monique's mom also really loved Henry.

Monique's brother  Joe, normally a cat person also loved Henry who was with him during his last days.

Henry was very involved in the community. He went on political rallies and met many politicians and dignitaries.

Henry listening to Stephane Dion's lecture. I think he got more out of then we did.

Campaigning in 2015 with Murray Rankin MP and Mike Harcourt former Premier of BC.

Murray Rankin conferring with Henry

 Henry listening carefully to Tom Mulcair

Henry is a healing soul. He's helped Monique through migraines, illness and often comforts her. He knows exactly what to do. He curls up with her in bed and then puts his head on her neck.

 

Henry was also a big support for me during my illness and treatment. Although he wasn't allowed into the room when I had chemo, (why not, he was family, right?) he was always there at home to comfort and nap with me. It's as if he knew what I needed. He's always been very intuitive. I can't imagine going through it all without him.

Henry had been slowing down this past year.  He became more lethargic and arthritic. We thought this was normal. After all he was 15 now! However at the end of May he was at an all time low. One day he was unstable on his feet, falling down, looked dizzy and even peed himself. At the animal hospital he was diagnosed with cannabis poisoning which was to be confirmed by blood work. After a three hour wait we decided to do the blood tests the next day. When Henry saw his vet Dr. Hyzka the next day he was still very wobbly and she doubted the cannabis diagnosis and ordered blood work. Unfortunately the blood tests revealed that his liver was either damaged or not functioning properly.

Then the most incredible sequence of events began. I reached out through social media  to my childhood friend Dr. Ernie Rogers who is now a great forensic veterinarian and C.S.I.  He  reviewed  Henry's blood work, symptoms and asked peculiar questions like: how his breath smelled, and has he had a big fall recently?  Ernie then urged us to obtain an ultra sound urgently! He was worried about his spleen. His spleen I asked? Isn't his liver the culprit? But Ernie insisted. "Get that Ultra sound! Do it now!"  So we had one done the next day.  It revealed a huge squid-like mass attached to his spleen that was wrapped around his liver. Our vet thought it looked like cancer. In a common sense way she explained "well he's 15, he has had a good life, surgery would be risky, so maybe it's his time?"  We were crushed. But Ernie messaged me, "don't give up. You have options."  Furthermore he insisted "get Xrays of his lungs. Do it now!" So we did it the next day. His lungs were clear. We thought surgery was an option.

We then got a referral to a first rate animal surgeon.  The next morning Dr. Christian Bolliger called us. He reviewed everything. He said that although Henry's lungs and liver appeared clean, he did not like the look of the liver image which revealed nodules, and in his experience these type of tumours are almost always cancerous with metastasis (cancer spreading) to the liver. At best Henry's chance of surviving surgery and being cured was 50/50. He said  that he could get a team together and do the surgery at 2:00 PM that same day. No pressure! So we met him at 2:00 PM.


We had a three hour grueling consultation with Dr. Bolliger during which he explained that he was very pessimistic about Henry's liver. The liver markers in his blood work were through the roof. The ultra sound revealed suspicious looking nodules. To him that meant:  cancer was likely.   Furthermore Henry was really sick. He was only going to survive a few more days.  It seemed that we had three options: we could euthanize Henry right then, take him home and have a few more days with him or have the surgery.  We asked if Dr. Bolliger opened him up, could he tell by examining his liver if it was diseased. He was quite confident that he could.  Meanwhile I got another timely instant message from Ernie. "Just take his spleen out! Do it now!"  So after going back and forth we made one of the toughest decisions of our lives, we opted to go ahead with the surgery, but we instructed Dr. Bolliger to not let Henry wake up if his liver looked diseased or if a cancer had spread.

We were with Henry for part of his anesthesia. We didn't want Henry's last feelings to be fear or last interaction with humans to be with strangers. It was a very sad and heartbreaking time.

 Saying goodbye to Henry, and wishing him luck before his surgery.

Two hours later Henry was in surgery.  After an agonizing hour and a half, one of Dr. Bolliger's team came out with a big smile.  Henry was fine! His liver looked good.  Dr. Bolliger took out the mass, his spleen and finished the surgery. Now the rest was up to Henry; to wake up and make it through the next few days.  A little later Dr. Bolliger came out and showed us a picture of the mass. It was  huge. He did not think it was a cancer but he biopsied the liver and sent the spleen and the "tumour" to a pathologist.   He told us to go home and he would call us.   It was hard to sleep that night. Early the next morning Dr. Bolliger called us and said Henry was awake and asked us to visit him and try and feed him. Apparently Henry didn't like the hospital food. Who does?  So we brought him some treats and his favourite thing, a croissant.  Sounds like pampering, doesn't it?  But, after all, he was so brave!

 

We saw him the day after surgery and took him out for a stroll. He was weak and wobbly but alive! He nibbled on a bit of the food and croissant but looked really unhappy. Henry came home two days after surgery and was very happy to be here!

He improved daily. His energy and appetite returned. He was actually better than he had been in many months. A few days after coming home, his surgeon called to say that the pathology reports revealed that there was not any indication of liver disease. In fact the tumour was benign and likely not even a tumour. He said "I can't explain it." He informed us  that Henry would have a normal life expectancy, as if this never happened!

You know, it doesn't always come to be, but what can you say about great things happening to wonderful people (I know….. you're thinking Henry is just a dog… I’m not so sure )   Whether or not you believe in something divine,  or you are spiritual. How do you explain this?  Karma? Luck? Coincidence?

Personally…. I think it was nothing short of miraculous.   Henry is an inspiration. He has given so much to so many people during his life, and now as reward he was given a little more time on this planet. 

That is an incredible gift. 

Epilogue

Some time after his surgery we ran into a woman a few times on our walks with Henry. She was immediately taken with him. She asked for his birth date because she is a numerologist.  When we last saw here she told us that she thought about Henry and believed that he was a healer, and a luminary.  She said, he must have a profound effect on people. She did not have any background or know anything of his history!  How's that for another "coincidence?"  I think she totally got Henry.  Don't you?

And as for the incredible Dr. Ernie, Henry's guardian angel,  who guided us from over 3,500 miles away without ever meeting Henry?  When I thanked him profusely…. Ernie said, “ Ah it was just a lucky guess on my part.”     I don't know about you, but I’m not so sure that I agree with Ernie.

The Cycles of Life

The Camas is a unique plant that was a food staple of the indigenous people of Canada and parts of the USA. It's often seen on Vancouver island in Spring.  In fact it's very unique to this region in Canada. This year it was exceptionally prolific and beautiful. It has an interesting cycle. The plant is grown from a bulb or tuber that the first nations people used to  eat. It  takes about five years for a Camas to flower.

Everything has its cycles.  About 30 years ago I contracted a  mysterious and  debilitating disease. I couldn't work for many months. I couldn't sleep.  Walking, reading, exposure to light and sounds were all difficult. Almost everyone thought it was all in my head. Most of my work colleagues were not supportive. Doctors were useless and just prescribed anti-depressants. The disease was then called Chronic Fatigue Syndrome (CFS) because there was no other way to diagnose it.  It was the worst experience of my life. Yes worse than cancer. Because it was not a recognized illness that  no one took seriously.  Yet it was much more devastating than cancer. It took years to be able to be more active and return to activities or regular work. However life was never the same. I could never ever work full time. I could not engage in sustained vigorous exercise. If I overexerted myself I would "crash" for  a few days. Yet I was considered the poster child of recovery from this illness as I tried my best to do as much as possible. I rarely talked about it.  If I did,  Doctors would stop taking notes. Possible employers or clients would disappear. It was a disease of silence. It's also a disease of terror. When I was immersed in bouts of debilitating fatigue, I thought I was and even wished I was dying. The suffering was enormous.  I lived in constant fear that it would come back. Every time I got tired or normally "fatigued" I would panic.  But I learned to hide my situation. Then I just ignored it for many many years, until my current onset of leukemia. As the CLL progressed it brought back bouts of fatigue. It was hard to distinguish which came first.

My latest blood work indicates that all my markers (WBC and ALC) are almost normal. The disease is being pushed back. Not cured but on the run, for now. However one of the biggest side effects from the treatment (iBrutinib) is.... fatigue. Yes my old "friend" is back. I am mentioning all this now because last week by chance I saw a movie called "Unrest."  It's a documentary film  made by
Jennifer Brea  a young, smart and talented Harvard student who came down with ME/CFS (as it is now known) and decided to document and expose it. As a result  a whole movement has evolved. ME/CFS is the most underfunded yet most debilitating disease on the planet. Millions are stricken and as a result have lost  careers, families, friendships, and  essentially the lives that they had.  This film was sponsored by the MEFM Society of BC and MEVA. Their web sites have a great definition of ME. 

So what does this all mean?  I often wondered if CFS/ME led to, caused or predisposed me to CLL.  There isn't much data on it.  And what about iBrutinib? Is the cure worse than the disease? I don't think so. There is some research however that shows the drug is still effective at lower dosages with less side effects. I think this is what I need to discuss with my doctors. That's if I can convince them that my fatigue is real and not "psychological."  It's worth a try. It's well known that iBrutinib is not a cure and does not work indefinitely. The disease will come back. That's its cycle. So why suffer now?

Camas field at Playfair Park.

It's Spring!

Spring has come to the West coast and with it: new blossoms, plants and warmer weather.
It's been a tough winter for most people, although here on the island it was mostly mild and not very wet. It's always my favourite time of year as it is symbolic of the hope of renewal.

On Thursday March 27th  I saw my treating specialist Dr. Yee who had been away since July. Although I had been seeing other doctors regularly it is  Dr. Yee who has been seeing me for almost 8 years now, is most knowledgeable and whom I have total trust in.  On the positive side he said that I am doing really well. My response to iBrutinib is great. My lymphocytes and white blood cell counts are almost normal and my platelets are in triple digit territory which is great. One of the things I really respect about Dr. Yee is that he does not sugar coat anything.  So unfortunately, he confirmed  my suspicion:  iBrutinb will likely stop being effective at some point. This means that the disease will mutate to become resistant to the drug and continue to progress. The history of this drug is only about 10 years or less and there is a subsection of people who have "fallen off" it.  CLL is a very difficult disease to treat because it is relatively slow growing and has time to evolve and resist most known treatments. Just as a reminder here is a great definition of CLL.

It's important to put this into context. There was a recent study which concluded that there was  a tremendous response rate (89%) with patients on iBrutinib for over 5 years.  But, as I have learned, given my genetic testing (FISH) results which puts me into a higher risk subset, and that my CLL was resistant to traditional chemo (FR),  it's good to be prepared for the day when iBrutinib stops working.  So what's next?  Currently there is only one other drug option avaialble to me in BC.  It's called Venetoclax. Basically it inhibits the cancer cells from ingesting a protein and thereby inducing cell-death. Similar to iBrutinib but a different and more aggressive mechanism. Here's more information. It's only available in BC on "compassionate grounds." This means if all other treatments fail. It usually only works for about 2 years.

My ultimate options are not for the feint of heart. The first one is a stem cell transplant. I  was  accepted as a candidate for this years ago, but age is a factor. As I get older the procedure becomes too dangerous. There is really only a 4 - 5 year window. The risks are very great. A 30-40% chance of mortality just from the procedure. In other words a third to almost half die in the process. And if I survive there is about a 60% chance of HGD (host graft disease) or of GHD (graft host disease.)  In plain language either my body rejects the cells or the new cells kill me, one organ at a time. Here's a really simple explanation. I would be a candidate for an ALLO (another person's ) stem cells. It's a very tough choice because if I survive I might be worse off than before or if it's successful it could potentially be close to a cure.

The final and most experimental option could be CAR-T therapy. You may have read about this latest innovation in medicine. It's part science and part voodoo. The theory is that my killer T cells (which currently are not working properly) are removed from my body. Then they are exposed to a virus and trained to be more active. Once they learn they are multiplied in a lab and then reintroduced into my body to kill the cancerous cells. Here is a great comic book-like explanation of the process. There has not been great success for CLL and in fact quite a few have died from the treatment. Plus the cost is prohibitive: about $ 500,000.00 US. Currently it is only being done in the USA however the Vancouver Hospital Bone Marrow Transplant Unit will be starting a program very soon. Dr. Brian Koffman who started the CLL Society and who is also a patient, had FCR (chemo), a stem cell transplant, and iBrutinib for 6 years all of which failed, is now undergoing a pioneering trial of CAR-T in Seattle. He has been a long time support leader and blogger. Currently he is blogging about this treatment and you can follow his incredible journey here. Let's hope he does well. One day I may have to follow in his footsteps!

Hopefully iBrutinib will keep on working for me and I won't have to make any of these decisions for a while.

So there's a lot to think about and a lot to celebrate at the same time.  So it's important to remember that I am feeling really great!  My health has improved to a level I have not seen in many years. But, as usual it's a real mixed bag. Glad to be doing well. But at the same time fully aware that it's borrowed time. Over all, happy to be alive and feel the warmth of the Spring air.

Remember to stop and smell the blossoms!

It looks  like their might be more challenges ahead. I know it's been a bumpy ride hasn't it?    But it's sure not dull!   Until the next time, thanks for ridding along and for all your support. Don't forget to get updates by filling in your email address at the bottom of the page.