Christmas and New Year's!

What a wonderful Christmas we have had! After my early release from hospital and repair of the damage from the house flood, I have been able to enjoy Christmas at home with the family, eating good food, going for walks, playing ping pong, and singing Christmas carols around the piano.

We even pulled out the old super 8 movies from the 1960's and showed our kids what Christmas was like when we were kids, complete with pulling the cat through the snow and playing with Christmas lights, oblivious to safety.

I stopped by the office and was overwhelmed by the generous outpouring of well wishes and cards and gifts (including blood!) from colleagues, friends and patients. It was nice to see the office staff again and meet with Katie Weiler who is managing my practice in my absence and inspires my every confidence. Martin and Carlynn helped me carry the three boxes full to the car and I have been reading cards ever since. The generosity is amazing and I wish I could reply to every one but it is impossible, so I will send a massive THANK YOU to everyone via this blog. I know that the positive energy, love and prayer has sustained me through the dark parts of my illness and has contributed to my near miraculous recovery.

December 25 marked day 100 post one marrow transplant, an important milestone in getting better. I have received over 50 units of blood and platelets over this time, but need transfusions only rarely now that the donor marrow is getting stronger.

And we are even going to take the family to Whistler for a night for a change of scenery and are working on a last minute booking for December 28. Wont be able to ski this time, but the kids will hit the slopes and we will  enjoy some time in the Village.

The New Year approaches, and it is one full of hope and promise. As we all face our personal challenges, we are reminded of the value of every moment of every day and the many things we have to be grateful for.

Homeward bound for Christmas

After weeks of little change, we got our Christmas Miracle. The new medication has kicked in and I am off TPN and IV meds and am being prepped for discharge next week, with ongoing close followup. I am getting all my medications by mouth and am eating 3 modest meals per day. I had partial day passes all week and attended 2 parties by Skype, and then snuck out for a hospitable open house with the WR/SS Division of Family Practice.

                  Jeff Purkis (lymphoma survivor) Santa Steve, and Charles King, Division co-lead

Flood repairs at the house are mostly done, neighbours have put up our Christmas lights, and the kids arrive from University this week. What more could one want? Time to hug and express gratitude to all those who keep us going.

Merry Christmas and Happy Holidays to all!

Day Pass

After a full month in hospital, I had my first day pass yesterday and it was wonderful. Nice walk on Kits Beach with my sister followed by lunch at my parents place in Point Grey. I have gained 2 full kilos now and am able to walk longer distances. The new medication is helping and I although I still require TPN and IV meds, they are now given intermittently which allows for a 5 hour IV-free window. This will mean family visits over Christmas even if I am not discharged yet.

Visits to our S.Surrey home will be on hold for a while as we had a kitchen pipe give way and flood the kitchen and basement. The house is now full of insurance people with large fans and dehumidifiers and will require significant restoration. What a hassle for Caroline especially. Hopefully it will be habitable by the time the kids come home for the holidays.

Recent visit from my friend Steve from Lantzville who continues to sport the lean and hairless look which make us look like brothers.

Grateful for all the positive energy, and hope to see people in real time in the near future.

Grey Cup Weekend

I realize that 2 weeks have passed since my last update and guess not that much has happened to write about. I am still in hospital on therapy for the Graft vs Host disease, a common complication of bone marrow transplants, especially slightly mismatched ones like mine. Once it sunk in that there is no quick fix, I have settled into a routine here in my second home and buckled down for the long haul.

One of those routines is the daily jigsaw puzzle with Caroline. Who would have thought? Yet here we are puzzling away, often for a couple of hours in a day. They are habit forming and fun.

Gratefully, my steroid dose has been reduced without adverse consequences, and I have been able to move my muscles more purposefully. Regular resistance exercises mean I am more mobile and have gained almost a kilo of mass.

I am still dependent on TPN (IV nutritition) for most of my calories, but as my gut settles down and I process food better, I will be able to taper off the TPN and come home again.

It is Grey Cup Weekend, and even though I am holding a soccer ball, I plan to watch the game and eat chips. After that exciting Western final, there is a palpable excitement in the city over the game and it should be great entertainment. Go Lions, Go!

Grateful for all the warm wishes you are sending, and they continue to pull me through the darker moments that are inevitable.

Remembrance Day Weekend

It is my daughter Zoe's 18th birthday this weekend, and she is visiting from UBCO in Kelowna for the occasion. It is so nice to see and hug her. Her warmth gives me a huge boost. Of course, I had not planned to be in hospital at this time, but circumstances dictated otherwise. The good news is that the new medicine is working and I am eating more, which is the first step to getting home again.

Current entertainment includes the Jeeves and Wooster series, a hilarious and light British comedy. Just finished reading the Witch of Babylon, a historical thriller, and returning to the lighthearted Alexander McCall Smith series "Ladies Detective Agency" set in Botswana.

Other good news is that my energy has been getting better and I have been able to ride the stationary bike daily for  a light spin, and do some resistance exercises, inspired by one of Werner's affirmations "I am getting stronger every day". These kinds of affirmations and the support of many continue to sustain me.

Update

I am sitting here enjoying the wonderful fall colours through my large picture window knowing it is cooling off a lot out there. I still need some more time in hospital, but the new medications seem to be doing their job, and I am hopeful to soon start taking them by mouth so I can go home again.  After a while, one becomes more philosophic about these things and I know we can just go one day at a time.

I had a nice visit with Martin and Yvonne the other day and it was nice to catch up on what is going on in the community. It seems distant, but is so much a part of me.

I am reading books and going through the Black Adder series. It is such a twisted British humour show that    I can only take one show at a time.

Dr John Shepherd

Yvonne and Martin

The prayers and support continue to help sustain me and I am always grateful.

Tune up

What a difference a day makes. Yesterday I wasn't absorbing my medications and became ill requiring re-admission to VGH for IV support.  After 24 hours feeling much better and seem to be back on track. Had a nice break at  my parent's place including daily walk at the beach with my Dad or Mom and hope to get back there soon.

Wishes and prayers continue to boost me. My new roommate is a Missionary so he has lots of upbeat comments for me, and I have the complete collection of Black Adder to balance out the irreverent side.

Steve

"Homeward Bound"

After 39 days in hospital, it looks like I may be discharged tomorrow! Not that I will miss my 10' by15' cubicle, nor the excellent nursing and medical care. But it will be a conditional discharge. I will need to come back to Outpatients on a daily basis for blood tests, check ups, and blood products as needed. As such I will stay with my parents in Vancouver for the first week or two before moving back to Surrey.

Fortunately, my new bone marrow has taken hold and is producing new white and red cells, and new platelets, all on its own.

As always, I am extremely grateful for all the well wishes and love that have been sent to me from all of you because this creates an energetic community of caring that has been helpful on my road to recovery and can be equally helpful to others in the community.

Birthday Neutrophils

It's been a happy birthday with visits from Jason (from McGill), Zoe (from Kelowna), and Caroline. They made a cake and came by to say happy birthday. Andy also dropped by with a DVD player for my computer.

Caroline, Zoe, and Jason with a birthday cake

The best birthday present has been a continued rise in neutrophils since the 5th. Tests show that the infections are under control, and the mucositis (which made eating difficult) is starting to subside. So I'm able to eat more now, although it's still mostly soups and other liquid foods. I can expect a platter of mashed potatoes and minced turkey for Thanksgiving tomorrow.

BMT Fellow Dr. Adam Bryant

Neutrophils Arrive!

Over an entire month without wbc's, it is not surprising to develop a variety of infections which my body can finally help fight off with some help.

I was a bit delirious with Fevers, pain meds, and lack of internet.

Our children arrive Friday, low key birthday on saturday,  and maybe some mashed taters on Sunday. LOts to be grateful for.

steve

Surprise Visit by R2S Group

Today I received a surprise visit by 25 riders from Team Coastal and Ride to Survive as well as a member of the Delta Retreads Master Swim Club. It looks like it was organized by Vicki Kunzli and Kevin Murphy and involved riders, many who are cancer survivors themselves, starting out in Delta, Richmond, and Vancouver and converging on VGH on this rainy Sunday morning.They positioned themselves outside my room and waved a sign at me, but unbeknownst to them I had been moved to another room invisible to the ground, and instead "Mr Smith" was treated to a dazzling display of spandex.

So Plan B involved leaving the expensive bikes in the care of who knows and riding the elevator to the 15th floor, one away from the penthouse. They waited in the elevator foyer while Kevin roused me from my drug assisted stupour and I met with them properly, fully masked, and attached to my IV pole (Fred) and not sure if I was still dreaming.

Friday was a busy day, too, as I was teleconferenced in to our 25th UBC Medical School Reunion and had a chance to talk to about 50 of my classmates and their spouses and be entertained with slides of fully haired young medical students engaged in silly antics. Marshal Dahl and others did a superb job of organizing. And I learned that just 6 months ago one of our classmates was in the same room as I am now, recovering from an autologous stem cell transplant, and has done well!

Otherwise I am doing fine, counting off the days like a prisoner in a cage, waiting for my white blood cells to recover. I am told that my Libra sign is in Uranus which nicely describes the irritated state of my bowels, which are recovering.

Greetings of course to all my supporters. You keep me going on those dark days. And hats off to good drugs which are welcome too.

Steady as She Goes

It is now 7 days post transplant and 14 days post admission and things are going pretty much as expected. I  have experienced various side effects from the treatments but they have been anticipated and managed by my excellent care team. I pretty much sit back and do as I am told.

Engraftment, the functioning attachment of the new stem cells, is not expected to happen for another week or so. Patience is in order, and the reading is going well, currently enjoying "The Cat's Table".

Our UBC Medical School 25th reunion is on this weekend, and I hope to attend via videoconference and send my greetings. Yeah, Class of '86!

TRANSPLANT DAY

Conditioning has completed successfully (I brought my handweights but did not need them) and I am ready for my infusion today at noon. Apparently, it is very straightforward, with the cells simply infused into my existing Hickman intravenous line and then we just wait for them to find their way into my currently nearly-empty bone marrow where they will take up their new residence.

Caroline and my immediate family will attend to mark this "second birthday".  And after that it is just a waiting game. All the love and wishes and prayers you are sending are part of that infusion and that is what makes it extra special and makes me so grateful.

"Champaign" and cake to celebrate the "Birthday"

My nurse Ali sharing in the cake.

Transfusion was smooth and uneventful an now it is time to sit back and relax!

Life on the BMT Ward

Settled in to my private room on the 15th floor with a nice view from Shaughnessy to Baker, and learning the rules of the ward and getting familiar with some of the staff and patients here.  Lots of attention to detail, like tracking my large volumes of urine.

Dr Kannadit Prayongratana, fellow

I have quite a team looking after me, including the Staff Man, Fellow, nurse, OT, dietician, dentist, pastoral worker, and assorted therapists and porters. Seems like a big fuss,  but it is nice to have them on your side.

Completed the 3 days of chemotherapy fairly uneventfully. The anti-nauseants make me restless so I have to keep on moving around in my space here,  a challenge for a Type A person.

Had the first of 6 sessions of TBI or Total Body Irradiation which is just lay down and listen to music for 12 minutes, then easy over for 12 more minutes. The interesting part of getting to the TBI is a long ride through the cavernous tunnels of the VGH complex, over to the Cancer Centre.  These tunnels remind me of my days working here as an orderly in the 1980-81 where we scooted over to the nurses residence undetected, and participated in fighting the arson fire in the old radiology department.

Birds eye view of Steve in the tunnel

So, everything is on track for the transplant on Sept 15, and just putting in my time now, and continuing to gratefully receive all the positive energy and love everyone is sending my way, as it places me in a state of equanimity or unconditional love, to accept these new cells as my own.

Admission Day

Admission to VGH has arrived today. Remission has maintained and the battery of tests has gone well, so the team is going ahead with the transplant, and I am so grateful.

We have had a wonderful August including the trips to Long Beach and Kelowna, and both kids are now settled into University, and Caroline has resumed some semblance of normality with work. It will be a quiet house with  three of us gone, but Rupert the cat gets to come back inside.

I have 6 days of "conditioning" starting tomorrow, and then my transplant, by simple IV infusion, is now planned for Sept 15. I will be largely cloistered from the outside world in hospital for 4-6 weeks because of germ concerns, but family will still be able to visit at times, and even bring food, like my mom's augolemono soup, or Greek chicken soup.

The cobalt radiation machine shown here is the same generation as the one used for my grandmother almost 40 years ago, and cured her of her cancer at the time.  It reminds me of the Starship Enterprise.

I am now at the state where I am totally ready for this journey, thanks to all the time reflecting, reading, and welcoming the love and prayers and good wishes of all the wonderful people supporting me, and again I am so grateful. For me now, it is time to climb a big hill on my bicycle, maybe Cypress mountain;  relax the body, centre the breathing, and focus the mind, and simply find my rhythm and climb the hill. Eventually, you know there is a plateau, with its rewards.

Addendum: Now admitted and settled in to my private room, complete with wifi, cell phone and room service. Sister Michelle is by for a visit on her lunch hour from City Hall.  Will get into my book shortly.

Successful OneMatch Event and the Road Ahead

George Yioldasis

One Match Stem Cell Donor Awareness Event held at the Vancouver Hellenic Community Centre was a great success, with terrific music coordination from Mark Ferris and the Yaletown String Quartet

This was followed by Bouzouki Solo by George Yioldasis, and more Greek Music by Mousiki Parea, and then the Finale by Wanting Qu. Many new donors registered on the available computers, and One Match Reps answered lots of questions. Great Food, and good support from the community all round.

Mark Ferris(left) and the Yaletown String Quartet

Steve expresses appreciation for his family

My brother Andy Larigakis planned and coordinated the event, Claudia Ferris capably MC'ed and rest of family from both sides did a fabulous job of entertaining and informing the the community about this opportunity to save a life.

Mousiki Parea

Recording Artist Wanting Qu

Stem Cell Recipient and Cancer Survivor and Cyclist Rob Nagel and his mom--in-law

Gelato at White Rock Pier with Zoe & Caroline

This week is testing week, where I get poked and prodded to ensure I am fit to tolerate the procedure, and admission to VGH is Sept 8 with my transplant on Sept 14, which becomes my second birthday. I am told to expect to be in hospital for 4-6 weeks and not feel well enough to take visitors except immediate family.

It has been intimated that my donor is a young woman and I will take on her blood type and gender, so I told my daughter to hold me back if I get crazy with the shopping. She said, "Don't worry Dad, I'll just embrace it"

The Road Ahead

Remission Continues

It is now day 25 on my new medication and I am continuing to enjoy a clinical remission.  I am able to enjoy swimming in the pool and shopping at Costco. Simple things hold indescribable pleasure when they have been denied. Like my first road ride in 3 months when Todd came by:

 My medical team wanted to see a sustained remission prior to proceeding to stem cell transplant, and it looks like we have one, so things are being scheduled for admission to hospital in early September with a week of "conditioning" followed by my procedure in mid September.

I want to acknowledge the deluge of greetings, prayers, cards, books, and gifts that keep coming my way. Every single one of them is received with gratitude and love, and they have all contributed to getting me through to this remission and will carry me on to the next phase of treatment. A large basket of gourmet goods from the Peace Arch Hospital Emergency staff is one of the most recent, and was quickly consumed by family and teenage visitors.

I now see this disease as something that has temporarily occupied my body, and will soon be purged so that my family and I can carry on, much as before.

My chance at a cure for this lymphoma is only possible because of the generosity of an anonymous donor from somewhere in the world. The donor registry includes 300,000 people across Canada and 30 million worldwide. In order to raise awareness and increase the pool of available donors, particularly in the Greek community, my family has launched a donor drive through Facebook. Donation is as easy as giving a unit of blood.

And they have booked a OneMatch Cafe event at the St George's Greek Church Community Hall in Vancouver on August 24 from 5-9:30 pm. I am told the electronic traffic on the OneMatch site has increased 100-fold over the past few days.

Please see the links below:

OneMatch Poster

Facebook Event

"Clinical Remission"

After a fantastic retreat to Long Beach with friends, we have returned home with body and spirit renewed and good news. The new medication I have been on for the last 14 days has taken away virtually all my symptoms and we are cautiously using the term clinical remission. I have more energy and am able to get out and do things again like shopping and light gardening. It is my 4th line chemotherapy and was provided by special release from Ottawa at a cost of $10,000 per month, and appears to be my salvation.

The other good news is that I have been confirmed to have a match for my bone marrow transplant, and the procedure could proceed as early as a month from now. The response to the public OneMatch.ca has been phenomenal and I thank everyone who has participated so far and those who tried but were denied registry because of age (who says 50 is getting old?). The drive will continue, and although it may not now benefit me, it will benefit many others for years to come and will continue to raise awareness in the community.

                      As my doctor said to me last week, "We were all due for a break!"

Long Beach!

Well, after suffering a setback last week I have emerged stronger and healthier than I have since the onset of my illness almost 3 months ago. I am tolerating the new medication well, day 4 today, and my rash, fevers, and swelling have all but disappeared, and my blood counts have returned almost to normal. Yipee!

My friend Steve called yesterday and insisted on flying us up to his place in Tofino for a few days and the time is right. I have been dreaming of running my feet through the sand once again!

The family has been incredibly busy organizing and promoting a stem cell drive through OneMatch.ca and CBS and have over 200 donors registered already!

Check out the short video and poster:

                                     http://bit.ly/GiveTIME4steve

                                                                              Poster

Temporary Setback

A series of events banded together this week to send me to hospital, but fortunately I am now at home enjoying good food, family attention, and reading on the patio.  The effects of chemotherapy, lymphoma fever, and dehydration combined to make me sick, but transfusions and medications combined to make me feel better again. I need go back to hospital tonight but should be fit for discharge tomorrow and resumption of my new chemo drug.

Fun visit yesterday from colleagues; Alan, Martin, and I came up with an escalating series of new and wacky ways to treat patients, which led Yvonne (and Kathie) to comment that we should come up with our own version of the Big Bang Theory TV Series.

Family is organizing a stem cell and blood drive and will send out more information soon.

Tour de France

Can you imagine winding your bicycle for over 200 km through little villages and climbing to the road summits of the Alps? This is beautiful, but challenging. Imagine doing this at race pace with 200 other cyclists jostling for position, and doing it every day for 21 days. This is the Tour de France. Now imagine having testicular cancer that has spread to your brain and lungs requiring surgery and chemotherapy, and recovering to win the Tour de France 7 times in a row. This is Lance Armstrong.

Every time I complete a course of chemotherapy, I feel like I have completed a Stage of the Tour de France, and am one step closer to completing the journey to recovery. My good friend Steve came by to help me along the journey. The branches of a tree had grown into the Bell satellite dish and prevented transmission of signals including the Tour, and required decisive surgery to clear the trees. Riding friend Al brought me the definitive guide to the Tour and we were able to sit down and watch Stage 6 on TV.

Zoe and Michaela baked me a nice cake to help celebrate an end to a challenging week. Thanks again for all the cards and prayers. For those wanting to do something more you are encouraged to give blood at Canadian Blood Services, or stem cells at onematch.ca.

Garden Party!

Werner came over one day and I happened to mention I was getting some overgrowth in the back yard. "Leave it to me, Steve" he assured me. Sure enough, 2 days later on my doorstep arrived a full work party with tools. And what tools! Bob was armed with a 6 foot long gas powered trimmer that made short work of the blackberry stalks the size of small trees. Werner and Martin and Jason manned the saws and trimmers on ladders and took down encroaching branches and trees. Lynn and Caroline took care of the weeds, and Zoe did photos and refreshments. What a team!

And of course there were all the final graduation festivities including the graduation banquet and BBQ which I was so pleased to attend as my energy has been holding strong since the last round of chemo. 

Zoe was stunning in her Grad dress, and her parents beaming!

Father's Day

Yesterday was Father's Day, but it really has been Father's Week for me.  Our son returned from McGill on Thursday, and our daughter graduated from High School on Friday, followed by a family celebration at the house. I was so proud!

Saturday was Ride to Survive, and I joined to greet the courageous bike riders like Dave and Glen (and Tobin) and volunteers as they arrived in North Delta after their 400 km trek from Kelowna infusing another $300,000 into cancer research.

And Sunday I was treated to a bike ride through the forest, and dinner out in a private Tatami Room.

This was all on the heels of the last chemo on Wednesday which left me feeling draggy. So a couple of days of lazing around are in order before my chemo boost on Wed.

Time for the Buzzcut

"Where is your bike?" asked my hairdresser. She had gotten used to seeing me arrive on my bike over the years, and even let me bring it inside and lean it up against the hair care display. As expected from the chemotherapy, my hair had been falling out over the past week.  In the beginning I managed to hold it together with generous helpings of hair gel. But the day before Caroline tried to run her fingers through my hair and lifted off a large clump, so it was time to go in and get the Cut. For a moment I had a mohawk, then it was all gone. Now it just feels cool and clean.

My parents roots in Greece come from agronomists (farmers) on my father's side, and sea captains on my mother's side. I couldn't see myself wearing a large farmers hat all day, so I chose the Greek seafarer or fisherman's hat, nicely customized for comfort by Caroline.

As far as health goes, I am feeling pretty good right now, enjoying the view and responding to emails and having meals with the family. I even finished my second novel yesterday, which is a rarity for me.  The fever has been a little more persistent than expected, but all the tests for infection are negative and the plan is to hit me with more chemo next week, which should resolve the fever. I had my BMT consult yesterday and we will be starting with tests on my brother and sister for a match. Fingers crossed.

Next week is a big family week also, with our son's return from McGill after his first year there, and our
daughter's graduation from High School. Household preparations are expectedly busy, with a visit to Costco anticipated. Continued thanks for wellwishes and blog comments...( I think you have to create a google account)

Ride to Survive

I need to put in a plug in for the Ride to Survive, an epic one day 400 km bike ride from Kelowna to North Delta to raise funds for cancer research. Over a hundred riders participate each year, many of them cancer survivors themselves, and an army of volunteers help out. Their dedication has raised over $1 million over the last few years and because all the support for the ride is donated, every single dollar raised goes directly to cancer research. Just 15 years ago my type of cancer would have been considered incurable, and now thanks to progress in research and technical skills, I am being given up to an 80% chance of complete cure. So if you are looking to support a cause that will help prevent and treat cancer probably in someone you know, this is a good one. I was fortunate to be part of it on 3 previous years. Go to http://www.ride2survive.ca/, click donate, and pick a rider to sponsor, perhaps Dave C or Erin E, friends who will be riding with my name painted on their legs this year.

I am continuing to do well, today sitting on the patio looking out at the sea as I blog this. Minor setback yesterday with a fever so I was placed on antibiotics as a precaution, and am feeling fine right now.

Lots of great support including a huge food and book card from the office,  dark chocolate and Canuck cupcakes from Kerry, Oolong Green Tea from the Yu's, and an edible fruit arrangement from the Sahota family: