Merry Christmas

It is hard to imagine it's Christmas tomorrow. December has been so full already for many reasons - of course losing Grandma (please see my post below) was very hard but a chance to reflect with family. Then I was also given a bit of a ride on my familiar roller coaster with lower than normal bloodcounts showing up a few weeks back, and repeated tests last week dropped further. Yesterday the counts were about the same, so at least they weren't lower. After a discussion with Dr. B, it seems the likely cause may be the medication I am taking to try to reduce my scleroderma, which can cause low hemoglobin. To be sure, the docs will have me do weekly bloodwork for a while and then we'll reevaluate the cost-benefit of taking the medication.

So uncertainty continues to play it's part in life! It's another reminder to take in the day as much as you can and focus on the good stuff. Like decorating trees...I helped decorated 4 this year: Tasha and Talyn's, Colleen, Allan, Grady and Joelle's, the Calgary Emergency Women's Shelter's, and Mom and Dad's. All of them very different and all contributing to the Christmas spirit.

I also was able to get to a few Christmas lunches, dinners and parties - everything from a simple lunch with a friend to my PwC Holiday Party to a "Drink the Christmas Tree Dry" party that included a tree decorated with tiny bottles that you picked off and drank (I did not help decorate or undecorate that one!) - and again all different and all contributing to the Christmas spirit.

We kind of already celebrated Christmas last weekend...Saturday Dad made Gnocchi for 3 of his siblings and their spouses - Marty and Karen, Mary Ellen and Bob, and (from Scotland) Louise and Dave. Sunday morning we had Christmas Morning Wifesafer, Citrus Pull-Aparts and cinnamon "donuts" as the boys call them, and we opened our gifts before they left Monday for Saskatchewan to spend Christmas with Dana's family. The boys' playing with their new Ironman robots was pure entertainment. Wednesday night I had dinner with Tasha, Talyn and Tasha's brother Chad and we exchanged gifts as well, before they left for Regina yesterday.

So Christmas itself will be pretty quiet. Which is another rare gift that we don't often see any more! It's really a season anyway, although it often ends up as one day to cram every possible person you love into, along with every special meal you ever dreamed of...so I will be happy to nap, play cards, watch movies and just enjoy the calm. And oh yeah, pack for my other favourite place...Maui. We leave New Year's Eve and Colleen, Allan, Grady and Joelle will also be there....so Mele Keliki Maka!

I wish you all a Merry Christmas season as well, and hope it continues into 2011. I am so thankful to be healthy and happy and loved - I wish for you the same. Cheers!

Tricia

An incredible woman

A few days after my last post, on December 6, my aunt Colleen phoned my mom to tell her Grandma had passed away. She was in her room and her new care home - and Colleen had visited less than hour before. Mom had just returned from visiting her the day before, and it was only weeks since I was in Vancouver to see her, along with Bob and Mom. I know she finally decided she was ready.

And while I feel so good about the peace she now has after such a long time with so little ability to live to the level she had all her life, it is hard to imagine the world without Amanda Gunn.

I had always heard stories about her earlier life, as a sister to several siblings in a large French family, growing up in Lebret, Saskatchewan. She loved and was loved by all her family and everyone knew her strength, beauty and compassion right from her childhood through to her adult life. Mom, Bob and Colleen's love and admiration for Grandma, along with the pictures of her and Grandpa were all evidence that she was an amazing mother and wife.

For me, she was a friend and a protector. She had come many times to stay with us when I was growing up and I was always happy when she did. Grandma always talked to me like I was grown up, like I was her friend, but loved me and protected me like I was her grandchild. When I was doing treatment for leukemia, grandma came to Calgary and stayed with me when I was out of the hospital. She had an ability to help without hovering! We could talk about anything and did. Her positive attitude and strength was always an inspiration to me.

My grandma was the youngest elderly person I knew - she walked a few miles a day right until her stroke, she drove a Mustang into her 70s, and we celebrated her 75th birthday in Las Vegas, with grandma awake into the late hours. After her 80th birthday party, weeks before her stroke, she was on an Alaskan cruise. I always said her social life was better than mine (and that was when I was in my 20's!). She travelled many places on her own over many years - from MacDonald's for coffee in the morning to Europe to Hawaii to the Maritimes - everywhere she went she met and impacted people who kept in touch with her for years.

She was a classy woman. A fighter. Strong. Compassionate. Loving. Funny. Beautiful.

She helped shape who I am. I loved her so much and will miss her.

Stop. Look around

I really can't believe it's December 1st. I realized I better post before I have to do a Christmas one!

Time continues to evaporate and October and November are a blur...work in October included a number of activities including the United Way drive in our office, which concludes with a "slave auction" - my auctioneer extraordinaire brother once again amazed my coworkers and made them laugh as he auctioned and got the bidding up on various items, including my paintings for a child's room, with the grand total exceeding $56,000 at the end of 1.5 hours. It's always fun to have him there, and introduce him as a mortgage broker, auctioneer and a guy who donated bone marrow not once but twice!

Speaking of my bone marrow donors, we finally managed to have a Skype visit with my family and Oliver's family in Germany. After a few technical glitches on my side, we were able to see Oliver, Judith, Noah, Jona, Claudia and her 2 sons! On our end, the boys had fun with the webcam (and I could see Noah giggling) and everyone on our end got to meet everyone on their end. Dad got meet them all finally and say a few words of thanks to Oli, and my brother and Oli got to share a beer as my 2 heroes. Of course mom and I were happy to be reunited with them all, such wonderful friends. The power of technology....I look forward to more virtual visits.

Tasha's Rethink Romp came and went with a big successful bang, raising funds for Rethink Breast Cancer, and getting a dozen or so of my coworkers out for the fantastic night. The theme was Superheroes, and while not everyone dressed in theme, my Gotham Girl costume worked well, although I think I will retire it! I wore it the week before the romp to Shannon's awesome Halloween party, so it got double value.

Certainly a highlight in October was becoming the godmother of Mireya Marjorie Lukiwski on October 31 in Regina - I had an excellent weekend with her and she is definitely one of my favourite girls in the world. I am so looking forward to watching her grow up - we even got another visit in November when Amy, Ellen and Mireya were in Calgary while Amy attended a conference. Mireya is very special and I am a proud Godmom.

My planned trip to Vancouver mid-November started a bit early as news came that Grandma Gunn was not well and in hospital. I flew out a couple days earlier than planned, and after a bit of a roller coaster week, she rallied again and the following week was discharged. It was great to spend time with her, even though she can't say anything and at times was in some distress. I love her very much and often worry about the lack of quality of life she has after being such a wonderful person. But it is clear she still wants to be here, and I know personally that at a point, a person can make the final choice when they want to go. So I guess I'll take her cue and just enjoy the time she is here.

While in Vancouver I also got to visit a bit with Colleen, Allan, Grady and Joelle and saw my good friend Shelley who recently moved to Vancouver. It was great to spend time with Shelley as we don't often end up in the same city lately...but old friends don't change, so we enjoyed a few good dinners, hanging in her fantastic place, and catching up like no time had passed. And while we shared a lot of time at the hospital, it is always fun to hang out with Colleen and her family...I am really looking forward to hanging out in Maui come December 31 as they are going to be there when we are. I can almost smell the ocean now....(and last week when it was -40 I was dreaming of the beach).

My little boys have all been keeping me entertained lately. Jack and Davis got over to my house a couple of time in November, and showed me how to really play the Wii. They loved snuggling on my bed, munching popcorn and watching Spiderman. Talyn and I hung out a bit in October (he likes my Wii too) and I just gave him some signature tickles this weekend. Alex, Doug and Michelle's little guy, saved up room for "breakfast with Tricia" when we met a couple weeks ago at Cora's for waffles. They are all growing so fast.

A couple weeks ago would have been Ryan's birthday and we went for dinner at a restaurant that we went to last year with him. Tonight I will join Tasha, Talyn and some of Ryan's friends and family at a Candlelight service that the funeral home holds. It's good to share some fond memories of him as it's still hard to imagine he's gone.

Healthwise things continue to be superb and my skin issues even seem to be improving. I avoided the neck surgery with diligent work and think I will be able to leave the bandages behind heading into 2011. The experimental drug I went on a couple months ago to help the scleroderma seems to be improving things a bit, so that's positive too. Other than that, the only thing that stops me from taking over the world is my fatigue. 4 days of work and a full life otherwise is sometimes a bit of a challenge, but given my track record I know it's incredible I can do all of that! I celebrated 13 year since transplant #1 this past weekend....

As Ferris Buller said once, "Life moves pretty fast. If you don't stop and look around once and a while, you could miss it."

Stop. Look around. Cheers...Tricia

Lights and Thanks

The past few weeks have been very potent - the Light the Night events went incredibly well with even the weather cooperating. Saskatoon was an amazing chance to catch up with family and friends who I see not as often as I'd like, and that alone was a gift. The event itself was excellent, with over 300 walkers and over $85,000 raised in the first year it was ever held - quite remarkable. Our team raised over $3,500! And the pasta party at Vic and Don's after was really a bonus...feasting on delicious spaghetti and meatsauce while hanging out with family and friends. It was also fun for me to have my family and friends hear me tell the "drive by version" of my story, and more importantly recognize them for the important role they play in keeping me alive.

Calgary warmed up just in time for the walk a week later and again we had a great showing at the 6th annual event – over a 1,000 walkers raising over $500,000. The PwC Tricia’s Trotters raised over $11,000 and PwC sponsored at $5,000 so between all the Trotters we came close to $20,000 for research and patient services. Quite remarkable. Again there were a large number of `out of towners` making trips from Regina, Edmonton and Vancouver. Jack, Davis and Talyn were front and centre for the warm up. There was also a fantastic group of coworkers from PwC - a continued demonstration of support I receive from work. As small tokens of appreciation, mom, Mary Ellen (thanks!) and I made chocolate chip cookies as "thank yous" for all the Trotters – when Joelle, Colleen, Mom and I were bagging the goodies with tags and ribbons, I remarked how the last two weeks had seemed like a wedding! Without a groom! We continued the pasta theme after the Calgary walk with a few of us heading to the Old Spaghetti Factory for some well-earned dinner.

The youngest Trotter was 4-month old Mireya, the daughter of Amy and Ryland, and soon to be my goddaughter! Later this month I will travel to Regina to be a part of her baptism, so my meeting with her during the Light the Night festivities was very special – she is a beautiful little girl and I think she will be quite a character as her personality continues to emerge. I was so pleased to share May 21st as our birthday and I will be honoured to be her godmother as well!

The Light the Night weeks were definitely a chance to reflect on life and especially on the past 13 years. I spoke at 5 different events during the last few weeks, and in each case several unique moments and connections, paint splatters, were received and given. I realized repeatedly how crazy my health story is and how more crazy it is that I feel so well despite the story. I met nursing students, patients, survivors and people impacted by blood cancers. One event included meeting Anne Robillard whose 7-year old son Noel who desperately needs a bone marrow transplant. http://www.caringbridge.org/visit/noelyoung

I have posted a link to OneMatch http://www.onematch.ca/, with Canadian Blood Services. Registering as a possible donor of bone marrow is the easiest it has ever been – you go online and you are sent a kit to swab your cheek and send it back in for processing. From that they are able to test if you are a partial match for someone (1 in 20,000 chance) and should you ever come up as a match, they will call you and you are still able to agree or decline. The donation process is a lot less invasive these days as well, with donors receiving a growth shot (similar to an immunization) 4 days prior to collection. The collection is actually of stem cells through the blood, so you are hooked up to a machine that spins the blood and separates the stem cells over a period of a few hours – almost like a really long blood donation. You go home that day, and do not really lose anything as the stem cells they collect are essentially extras due to the growth factor. When Oliver donated, he sent me a picture of him donating – with a smile on his face and sitting in jeans! And the second time Brandon donated he managed to work from his blackberry almost the whole time! Consider registering to help someone like Noel just like Oliver did for me...

The celebrating just continued into October. First up was brunch for my big brother's birthday Oct 4 with the boys, Dana, Mom and Dad and I. Then Mom and I headed to NYC to attend the Sloan Kettering Cancer Center's Transplant Celebration for survivors. Although Dr. Young, my main NYC doctor, was out of town that night, right through the door we ran into Dr. Perales who was the doctor who saw me when I relapsed in 2006. Not long after, I was so lucky to meet the head of the clinical trial that I am a part of, Dr. Farid Boulad. He came over with a big smile, gave me a hug, and said '"you don't know how proud I am of you". It was fantastic to be a part of the continued celebration of survivorship – hundreds of people who looked healthy, were eating, laughing and visiting – and no one could distinguish the survivors from the supporters.

We managed to get in a few additional days of Manhattan fun - meeting up with old friends, shopping, seeing a play, eating well, walking along the river and in Central park and generally taking in some NYC energy. I never lose my love for the streets of that city. (Neither does mom)

It is all fitting that as I finish this post, having arrived back to Calgary this evening, in a few minutes it is Thanksgiving. The past few weeks have been an extended festival of celebrating life, living and the people that help us do it every day. I am so blessed, so fortunate and so thankful for each moment, each person, each paint splatter I continue to experience.

Thank you. Danke. Grazie. Merci. Tak. Gracias.

Pop the Cork

August seemed to evaporate after the European excursion. In my new "non-med" world, I managed to get in a few golf games, some visiting with friends and family, a wedding, a European party, and some rest. Even work went at a manageable pace. I am feeling better than I have in many months, and I am very grateful to be spending more time living than trying to live.

I spoke at another "kick off " for Light the Night in August and now LTN is really accelerating - my Saskatoon team is way bigger than I ever would have imagined, with friends and family even coming in from Regina for the event. PwC sponsored the Calgary team and now it is also ballooning - and people are flying in from all over! I continue to be amazed and overwhelmed by the support and energy from so many people, so many years down the road of this journey. I am very fortunate.

On the health front, my skin is giving me the most annoyance currently. My neck wound is still not closed, and at the last visit to my plastic surgeon the next option was discussed - surgery to remove the current graft, with a new graft of both skin and tissue from my inner arm...6 hours of surgery and a week in hospital. Not a great option in my mind! So for the next few weeks, I am making a last attempt of using a ginormous amount of topical antibiotic to force the skin to heal. And a few prayers! I also saw my dermatologist about the scleroderma and it looks like my options there are very limited as well. I could try a different light therapy 3 times a week for 6 months that "might" help the skin thickening. A lot of energy for only a possible chance of a result. Mmmm. Still thinking on that one.

As much as the skin is annoying it is just that - minor and manageable. The real highlight of this month came while I was on a fantastic weekend in Vegas with some girls from work. The doctors wanted to repeat the bone marrow biopsy they did just before Europe, based on some "interesting" things that the pathologist had seen. I had the biopsy on a Tuesday and flew to Vegas two days later. Friday I was by the pool with the girls when my cell phone rang "Unknown Number" - Dr. Brown was calling me and I have to admit I was a little nervous. He wanted to let me know the results were back and that I should "pop the cork" as the results were clear. At that very moment the waitress arrived with our mojitos! It was a fantastic feeling.

So I'll deal with the skin. And in the mean time, pop the cork people. And light the night. Cheers.

The Paint of Europe

Well it was a trip of a lifetime. My (and mom's) first trip to either the UK or Europe. In many ways it was 3 trips in one. I can't really describe how full the European experience was, but I will at least provide you with some of the highlights...

Part 1: A long overdue "Danke" in Bavaria

The journey started out in Germany, and this leg was really the driver for the whole trip - to meet a man named Oliver Bosch, who was my donor for transplant #2 in 2003 (Brandon was the hero for #1 and #3 of course), and thank him in person. Mom and I arrived in Munich July 15th and had a couple of days to shake the jet lag and get acquainted with new language, white sausages and of course beer. A very hot double-decker tour of Munich allowed us to see the City in a short time and we loved it.

A couple days later we were on the train to Donauwoerth, about and hour and a half north of Munich - Oliver was going to pick us up and drive about 20 minutes to his home in Oettingen of Bayern. When the train slowed, we passed by the people waiting and noticed a dark-haired guy with a little blond boy beside him - the boy was holding a large sunflower, and we guessed that was Oliver and his son Noah. We were correct and we stepped out to be greeted by smiling Oliver and (then) shy Noah. The emotion of the moment made me forget the German phrase I had tried to memorize on the trainride: es ist nett, sie zu kennan (it is nice to meet you).

Oli drove us to Oettingen, and we managed quite well trying to communicate - I had my "Speedy German" booklet, but mostly it was Oli's English (better than he thinks it is) that allowed us to talk. The countryside was beautiful and we arrived shortly to his home, where his wife Judith came out front holding their 10-month old son Jonah. There was a sign on their door welcoming me, decorated with Canadian flags and red and white balloons, and Judith's tears and hug was beyond my expectations. That moment and the whole weekend really was beyond my expectations, and I knew immediately it had been the right choice to make the trip.

The rest of the weekend was really a blur of conversation, laughter, tears and eating. Judith (who is so dear) made multiple meals of delicious Bavarian fare and multiple desserts - including this cake, another welcome to me! Claudia, a close friend of Judith and Oli's, arrived a few hours after we did and generously acted as a translator for us the rest of the weekend (as she had done over the past 7 years!). She runs a business "All about English" and was tremendous in making the link for us so seamlessly. We were able to talk constantly late into the night and by the next day, I felt as though I had additional friends and family that I had known for years.

I learned a bit more about Oli and how he came to donate bone marrow. There was a boy in the area who had leukemia, and a call went out the community to register. Oli of course did that, and later was informed he was a match for someone else. Later on, the boy passed away. Oli wrote his parents a letter to let them know while their son had not survived, because of their son, another life had been saved. He's just such a good guy.

On Sunday they took us to nearby Nordlingen, a Bavarian town surrounded by a stone wall built centuries ago to protect it from being attacked. Oliver did his brewery training for 4 years in Nordlingen before working at the brewery in Oettingen (yes, we drank a few beer while I was there!). It was a lovely day walking the streets of this quaint Bavarian town, stopping for coffee and later dinner, chatting like old friends. We promised to keep in touch through Skype, and planned for Brandon and Oliver to share a beer over the internet, as my 2 heroes.

When we left Oliver, Judith, Claudia, Noah and Jonah, it felt quite surreal to look back on what had transpired in the past couple days. It was such a potent weekend, and quite surreal to realize how important it was to have come and made this connection. I was finally able to communicate to Oliver and his family what he really did that day back in July 2003 - to show him the person he had saved, the life he had given, not only to me, but to my family and friends. And of course to thank him. Danke. Danke. Danke.

Part 2: The whirlwind taste of Italy and France

Flying out of Munich the next day, the tour started in Rome, and after a "welcome" dinner for the group the first night, we embarked on a action-packed day covering The Vatican, Sistine Chapel, St. Peter's Basilica, the Forum, the Coliseum, the Pantheon, Spanish Steps, the "3 coins" Trevi Fountain and a pile of other amazing sights. It was incredible to hear the stories that came with these places - I suddenly realized that had I been able to see and hear the stories the people related to these places, I wouldn't have thought history - just dates and facts to memorize - was such a boring subject. Mom also commented that we really haven't come very far in the world of construction - being in the Pantheon, over 2000 years old, having survived multiple floods and earthquakes, made you think less of the towers of our "baby" country Canada!

Leaving Rome the next day we stopped at Assisi on our way to Venice and were treated to some amazing views from the church at the top of the hills. Olive trees and sunflower fields led us through the mountains and after a necessary change in our bus, we arrived in Venice that night. Venice was another amazing discovery to me - while I understood the canals and "floating city" idea, it was entirely different to see it and realize it was created by the Venetians to avoid being attacked by the Barbarians. Thousands of trees pounded into the lagoon to form the base of the city...all the canals were incredible and the tiny streets and pathways. After seeing a glassblowing demonstration, the Bridge of Sighs and Doge Palace, we took a boat to a nearby island Burano where all the buildings were pastel coloured, and we enjoyed some quaint shops and an excellent lunch.

On our way to Florence the following day we stopped briefly in Ferrara, where we had the best coffee (cafe) and explored a local Italian market. That night we took a short ride up the Tuscan countryside to a lovely property where we enjoyed a wonderful and delicious Tuscan dinner under the trees. I definitely felt drawn to Florence and wondered what a return trip for a month to learn Italian might be like? The following day we were mesmerized by Michelangelo's David...again, I had seen pictures but never understood what the sculpture really was about. After Florence we headed toward the Mediterranean, with a stop in Pisa for a look at the leaning tower. The coast made a beautiful drive through Genoa, a stop at a perfume factory in Eze, through Monaco and eventually to Nice. Our hotel room in Nice overlooked palm trees and the Mediterranean and really it was beautiful and calm. Mom and I had a lovely meal on a patio that night and chatted and laughed with an Australian couple who gave us excellent advice on menu choices!

Speaking of Australian couples, we had a very nice one on in our tour group, as well as a number of very friendly people from the U.S. and Canada. Alongside the various monuments, churches and museums, the people on the tour made the trip interesting as well - lots of new faces and stories added to the potency of the trip. We have already been in touch with some of our "Globus friends" since we arrived home.

The second night in Nice we drove into Monaco and after visiting the church where Princess Grace is buried and having an incredible dinner, we spent a little time in Monte Carlo. The cars that pulled up to the casino were a sight in themselves, and we sipped an (expensive) drink in the Hotel de Paris next to the casino, taking in the loveliness. On our ride back into Nice, I couldn't take my eyes off the full moon reflecting on the Mediterranean. I loved Nice.

A high-speed train took us very comfortably through France to Paris, the last stop of the tour. That night we took in a boat cruise up and back the Seine, as well as a tour around the core area, allowing us a view of many of the major sight of the city. The evening ended with a perfect viewpoint of the Eiffel Tower, sparkles and all, which prompted me to delete the 30-some pictures of the tower I took earlier on the river and replace them with the best one! The following day, after a visit to the 2nd level of the tower, mom and I walked the streets of Paris, stopping at the Musee Dorsay to take in the largest impressionist and post-impressionist display existing. We had coffee and crepes at a cafe outside the Louvre and a wonderful dinner outside near our hotel. Paris was calmer and cleaner than I had expected, and I can see that it would require a return visit to really explore what it has to offer. Ah, Paris.

And while all of the above sounds and was fantastic, you might gather that it was a bit "full" and slightly exhausting. The heat was incredible and I sweated more in those 10 days than in the past 3 years! With the limitations of 1 suitcase on the trip, mom and I were beginning to run out of options for clothes - had mom not found a laundromat in Florence (an entire story in itself) to "refresh" our packed wardrobe, we never would have made it through France! So when we flew into a much cooler Scotland the next afternoon, we were ready to shift gears (and wear pants).

Part 3: St. Andrews - Family and Friends

It was so great to be welcomed at the Edinburgh airport by Dave and Louise - after all the wonderful new things and people we had been seeing, familiar faces were also welcome. And as we drove across the countryside in Scotland we chatted away about our trip and visited freely before enjoying a home-cooked meal that night! The following morning we slept in (what a treat) and slowly took in the morning with coffee on their patio overlooking a beautiful garden. Their house is right off of the East Sands and it was so easy to be there. Over the next few days, we enjoyed celebrating Louise's birthday, their 40th anniversary (with a lovely lunch at the St. Andrews golf club) and life in general. It was a true visit - we learned more about each other and for me, it was a chance to spend time with some of my biggest supporters over the past 13 years. We had lots of fun with their neighbours at a barbeque, and with their friends Norm and Linda who were also visiting. I finally met their friend Margaret who I had received so many nice cards from over the years. Mom, Louise and I climbed the 154 stone steps up the old St. Andrews tower and I even got to have lunch with Claire Labelle, an old friend from high school and university, who travelled from Edinburgh with her husband Stuart and adorable daughter Amelie. We explored the wonder of St. Andrews and towns close by, and knew we had to come back, with Dad.

That was further confirmed when I had the honour of playing the Old Course at St. Andrews the day before we left for Calgary. With the Royal & Ancient looming behind me, using the clubs my uncle had so generously provided, I made my golfing debut for 2010 on the world's most historic golf course....and I can tell you my drive was not great. But the weather was beautiful (remarkably no rain!) and the course was something, and I was golfing in excellent company, so my attraction to the crazy insane bunkers (they really are like walls) and thick rough couldn't take away from the experience. My last hole was actually decent and my drive popped over the Swilcan bridge so that I could cross it with my head held high! Having a drink in the "members only" club wasn't bad either (okay I'll stop the bragging now).

Quite a day. Quite a week. Quite a trip. An enormous amount of paint left on my canvas from the European experience.

Salut!

I am sitting in the Paris airport trying a blog post on my blackberry...words cannot describe the past two weeks...or at least from my blackberry! All I can say is that the trip started with a most amazing visit with my new friends/family in Bavaria...Oliver, Judith, Noah, Jonah and Claudia. More later on that! The trip since then has also been wonderful...heading to Scotland now and back to Calgary next Wednesday. Cheers to all...Tricia

Cleared for takeoff

Well I never would have believed it but I am travelling to Europe tomorrow. Last Wednesday my hemaglobin was back up to 129 (120 - 140 is normal for women) - probably higher than most of you! Dr. B and Dr. A said we better "make hay while the sun shines" and go ahead with Europe! I will have another bone marrow biopsy a couple weeks after I return, but in the meantime Mom and I will make our European debut and visit Germany (and meet Oliver Bosch who donated his marrow for transplant #2), do a tour from Rome through Italy to France ending in Paris, and then spend 5-6 days in Scotland (and visit my aunt and uncle Louise and Dave) before returning to Calgary in early August.

One day you think your life is shattered and the next you're going to see the Sistine Chapel and the Eiffel Tower. 44 pills per day to none (which means a glass of fine Italian wine is in order). Life is like Calgary's weather...just wait a few minutes and it will change.

Cheers (and thanks for all your prayers)

In a matter of days

The month started with the boys turning 4 - they had a party with their friends and then we had dinner with them later that day...hard to imagine they are now so grown up now. They play the Wii on their own, think for themselves, and show off their muscles when it seems appropriate! I certainly continue to love every moment I get with them.

A couple days later I was sitting on my sofa with the TV on and felt a slight tightness in my chest. 10 minutes later it was a pain and an hour later mom was racing me to the hospital and I almost threw up from the severe pain in my chest that was even worse as I tried to breathe. 3 hours later I was seen in emergency -many tests later it was determined I had pericarditis...which is inflammation of the pericardial sac around the heart. A couple of days later they determined I had a virus that may have triggered the pericarditis and I was out of hospital with antibiotics, anti-inflammatory medication, much less pain, and a lot of fatigue.

The next week I started by having dinner with Tasha on her birthday (and watching Twilight). I was back at work and even made an overnight trip to Saskatoon to speak at the Light the Night Corporate kick off breakfast - an event to help increase corporate involvement with the September event. Met a lot of very interesting and good people. It's always amazing to see how many of these people there are in the world...:) When I got back to Calgary I went to work and then to a charity function. My ankles were quite swollen by the end of the night, and in the morning they were no better. By 4 PM my calves were incredibly swollen and my feet were almost deformed looking. It hurt to walk. So, I called in and the doctors put me on a medication to reduce fluid, but were also cautious as I have had a blood clot in the past. My plan to fly to Winnipeg the next morning to hang with my friend Val and see Tom Petty in concert was out the window. While the swelling improved by the end of the weekend, they had me go in for a echo test to check my heart. All seemed okay and again the week went forward until Wednesday, when I as at the clinic for regular follow up. It seemed my kidney functions were now abnormal. But the worse news was that my hemaglobin was below normal for the 2nd week in a row. Consistently in my first diagnosis and both relapses, low hemaglobin was how the disease presented. It's "MY" number. I would have to wait for bloodwork the following Monday to see if it was continuing to fall. And all you can do in the meantime is live.

Friday night Tasha continued exposing me to her new found passion for the Twilight series and her and I watched New Moon. Saturday I saw How to Train Your Dragon with Jack, Davis and "Nana and Papa". Sunday Tasha and I had tickets (good ones) to Lilith Fair. In the morning I started feeling a familiar pain in my chest when I breathed in - this continued through the day and while eventually it calmed down after I took anti-inflammatory meds, Lilith was a no go. Concerts just didn't seem to be working for me.

I had bloodwork the following morning before work and later that evening Dr. Brown called - the hemaglobin was even lower. The familiar taste of relapse filled my mouth, the world "swirled" and everything changed. The fear of not seeing the little boys grow up became vivid and confusion as to why I must again repeat this path when I try to give back engulfed me. A bone marrow biopsy was the best next step - earliest was Wednesday morning. Unlike when I had relapsed in 2002 and 2006, the knowledge that I had already used up the "Wild Card" third transplant and maxed out the induction chemo options made me very tired. I slept most of Tuesday.

Tuesday afternoon I felt some chills and while Tasha was over for a visit, I checked my temp to find it was high-grade fever 39.1. Called the clinic and was in emergency an hour later. Dr. Al-Hashmi, a newer addition to the Calgary bone marrow team saw me and blood cultures, xrays, and a few other tests later I was in Unit 57 again, getting antibiotics and fluids. Dr. A did the bone marrow biopsy the next morning and I slept several hours afterward. In the afternoon, Dr. Brown and Dr. A came in to see me as they had just been with the pathologists reviewing my marrow - there was no evidence of leukemia. What? No evidence of leukemia. I could hardly process the good news as the past days seemed to be a series of dreams and it was difficult to det ermine what was real.

So as Dr. B says, the factory is functioning just fine but either not enough red cells are being produced, or something is happening to the red cells once they are produced, as my hemaglobin Wednesday had plummeted further to 80 from Monday's 97. I received 2 pints of blood (special thanks to all those who donate blood) that day which brought my hemaglobin up to 102 and by evening I was feeling pretty well. Thursday the docs let me go home on a pass (always revoked should a fever arise) and stay out overnight. Marvelous. Quite marvelous.

I made it to today Friday without a fever and went back to the Unit to find my clothes and things had been moved to 57B - this was a sign that I was too healthy to use up a bed on 57. Excellent. The nurse came by for vitals and the lab came for bloodwork while I finished this post. Dr. A just came by now to check how I was feeling (which is actually better than I have in weeks) and that none of the blood tests they would run for anemia was giving them further clues to what was causing it. They will likely want to do another BM biopsy in a month or two just to keep checking the factory. My albumin was also low suggesting I needed to eat a bit better (and rest more) but that unless I had a fever I could go home again until Monday, pending the results of the bloodwork today. I'd come in for bloodwork Monday and then likely get discharged to be seen in clinic Wednesday. Sounds good to me.

While I finished typing the paragraph above, the nurse just came in - hemaglobin 115. What? Woah. What can happen in a matter of days..the bloodwork and emotional freefall and jumps. Although I have to see what the blood says Monday, there's still a chance I will get to Europe in 2 weeks afterall.

Oh yeah I forgot to mention - In May I planned a trip to Europe to meet Oliver Bosch, the donor of my bone marrow for transplant #2, and thank him in person. A tour through Italy, France and back through Scotland. Haven't been to Europe. With all the drama this past few weeks, Mom booked to join me. She's never been to Europe either. Clearly this week's events made Europe seem impossible. Of course, you never know what can happen in a matter of days. So enjoy your weekend, at home, in the mountains wherever. It's quite incredible whatever you are doing. And eat well ;)

Stop, Drop and Smile

Many of you have asked about how to get a copy of Ryan's book - Stop, Drop and Smile. Now the books are ready and you can follow this link http://www.stopdropandsmile.com/ to get one. Ryan's hope was that as we went about our daily challenges , we would stop and take a moment to think about "a guy named Ryan" and that would give us the perspective we needed to get through whatever we were dealing with and maybe even with a smile.

25% of the net proceeds will be donated to Rosedale Hospice, who provided amazing care for Ryan, Tasha and Talyn during Ryan's last few months.

Blowing out the candles and Lighting up the Night

While the past weeks have continued to be a little too busy, the past week has been filled with lots of birthday celebrations - from cake with my Survivor girls to several voice messages, gorgeouse flowers, calls with people singing on the other end, even Facebook friends wishes, ending in a wonderful dinner with my family (including Tasha and Talyn) on Friday. It was one of my most favourite birthdays ever, despite a very crazy day at work. I received many gifts, the most unique and precious of all - a morning call from my cousin (little sister) Amy, to say Happy Birthday and tell me that now I have a little girl named Mireya to share my birthday with me - she had just been born a few hours before the call!


I plan to just try to keep celebrating all the way through Grandma Gunn's birthday tomorrow, Jack & Davis' birthdays June 4th, to my 3rd transplant 2 year birthday June 9th to Amy's birthday June 13th and Tasha's birthday June 14th. And anyone else's in between! And by then, I'll be off prednisone and probably celebrate that too...


Speaking of celebrations (which often include balloons) - I mentioned in my last post I am the Honoured Hero for the 2010 Light the Night walk for Leukemia & Lymphoma Society. For those of you who have been part of "Tricia's Trotters" in the past, you know that the 5 KM walk is held at dusk and everyone walking gets a balloon that lights up. White balloons for survivors, red for supporters and gold for those walking in memory of cancer warriors. Kind of a cool picture, these lit balloons bobbing up and down along the river (or in the trees in Vancouver!) as the sun sets. A chance to celebrate life. And all funds raised go to research and patient services for blood-related cancers.


I will be at both the Calgary (September 25th) and Saskatoon (September 18th) walks as the Honoured Hero, and would love to walk with you if you are able to make it. You can register on the team by clicking here http://my.e2rm.com/TeamPage.aspx?Lang=en-CA&TSID=273541 and if you can't make it but want to make a donation you can view my fundraising page at
http://my.e2rm.com/personalPage.aspx?SID=2611188

So celebrate the extra day of the weekend tomorrow and I hope to see you in September! Cheers

The Perfect Storm

In some ways the past weeks have been like a perfect storm - Ryan's final weeks, his passing, celebration of life and the world post-Ryan, coupled with my busiest weeks of the year at work, all laid on top of a growing number of medications to treat GVHD and corresponding side effects and medications to treat those side effects.

And like a storm, or a hurricane, there is nothing you can about it when you're in it but live through it and know that eventually it will pass.

I really didn't know how to comment on the past 6 weeks – anything I write will still understate the actual. I was almost too overwhelmed to write about it, and it has taken me days to finally get it done. Certainly the many indirect or direct “wondering how you are” messages people have sent as helped me finally hit “Publish Blog” ... and so thank you...while I still feel strange giving my health update in the shadow of Ryan’s struggle recently, I will start with my health first for you!

GVHD of the skin was actually progressing more than I realized- the skin "spots" I had first identified actually were thickening and hardening under the skin and reducing my range of motion. So the doctors continued to hit it hard. In mid-March, it seemed every day I was heading to Safeway pharmacy for a new medication. As I mentioned last post, there are really only 3 drugs I am on that are focused on countering the GVHD - prednisone, cyclosporine and PUVA. However, the side effects of each of these need to managed with other drugs, and of course a few more side effects from the secondary line of drugs! The # of pills adds up quickly (currently between 40-44/day) and then I have to go to the phototherapy lab 3 times a week as well as for blood work once or twice a week as the toxicity of the cyclosporine can wreak havoc with your organs so they monitor the level regularly.

People often asked “how are you feeling”? Honestly, it depended on the day, the amount of water I’d drank, how much consecutive sleep I was able to get the night before, and sometimes the timing of when I took the medications...on the outside only my face looks a bit swollen (“moon face” if you want to google it) from the prednisone and I have tremors in my hands. One of the drugs (we’ve yet to figure out which one) is making my arm and leg muscles seize up – to the point of getting up 24 times a night to release the muscle – so I’m on another medication for that. On the inside, it’s impossible to separate side effects of the drugs from the loss and grief I feel about Ryan’s passing and heartache for Tasha and Tayln. Prednisone patients often have difficulty coping and the “extra energy” I felt in 2003 didn’t seem to happen this time – maybe it was offset by the muscle medication, maybe it was offset by sadness. Sometimes I feel okay and happy, sometimes I burst into tears (and am thankful I have an office door) and sometimes I feel like what it must feel to be a little high (with all the drugs I’ve taken over the years I never bothered to try any recreational form so I can’t really confirm this!)

In any case, the "cocktail" seems to be working - I still have areas that it looks and feels like I have extra tendons and my range of motion when lifting my arms for example is reduced, but since the treatment started, no further thickening seems to have happened and there is some recovery of the areas affected. They’ve even started to taper the prednisone dose down (woo hoo!) – not a steroid they like you on high doses for long – while keeping the PUVA and cyclosporine going (no estimated date of concluding those). So as long as it’s working I am happy to manage the unpredictability every day brings for a while.

And I almost forgot...I had the biopsy on my neck graft (separate skin issue) the first week of April – and results a week later indicated no leukemic or other malignant cells or significant infection, so I continue to be on an anti-biotic (what’s a few more pills for the pile!) and the skin is continuing to improve (whew!)

Since last March 2009 when I started back to work a few hours each day, I had gradually been increasing my hours according to a mutually-agreeable plan that includes managing a handful of not-for-profit audit clients, as well as a few internal roles. The hours reached 4 days/week at the beginning of March. As it happens, March, April and May are the months that most of my clients’ engagements run. So work was at its busiest point when the GVHD surfaced and Ryan and Tasha faced Ryan’s last days. It is a challenge to keep all the “balls in the air”, but I continue to work with some amazing people at PwC - staff on my engagements stepping up, and I am very fortunate to have incredible support from the partners.

And while it sounds like all I’ve been doing is popping pills, bloodwork and working, there have been lots of wonderful moments mixed in to the madness, often all in the same day, and I certainly cannot complain. It’s impossible to describe but perhaps just a few words and highlights do it- words: Potent. Exhausting. Beautiful. Devastating. Unpredictable. Highlights:

3/26 Visiting my audit team at Heritage Park in the morning, after lunch - telling my story and observations on nursing at a hematology conference then stopping to visit Ryan at the pad to talk about “the butter” I had felt while in ICU. 4/4 4 AM Ryan Westerman, pilot, father, husband, eternal optimist and Bertuzzi (#44) fan passes through "the butter" into peace after an incredible fight. 5 PM Celebrating Easter Sunday with my mom, dad, my brother, Dana, Davis and Jack, laughing as the boys figure out how to play Wii bowling, golf and boxing "on their own" - high fives and "Jackie it's your turn!" 4/8 Crying and laughing hysterically in the same minute, watching videos Ryan had made in January for his close family and friends, as we gathered after an incredible Celebration of Life 4/14 Agreeing to be the 2010 Light the Night Honoured Hero for Leukemia & Lymphoma Society - Prairie Region (stay tuned!). 4/16 Hanging on the patio drinking cranberry & soda with coworkers at the PwC “end of busy season party” 4/17 Surprising a friend for her birthday, three of us donning wigs to look like her. 4/18 Soaking with Tasha and friends in an outdoor hot tub in a beautiful home in Kananaskis 4/24 Listening to The Eagles with Mom and Colleen one-night-only at MGM Grand in Vegas from incredible seats arranged last minute as a surprise by my resourceful brother (of course the rest of the Vegas weekend stays in Vegas) 4/30 AM Speaking to cancer survivors at Tom Baker Cancer Centre about my story and "the balance" of spending your energy on fighting to live and just living. PM Davis cheering me on as I played (while my forearms cramped!) against Papa in the horse roller ball carnival game on Wii saying "Faster! I love you Tricia!" 5/1 Drawing the "STAR WARS" logo in chalk on the sidewalk in preparation for Talyn's 5th birthday party 5/6 Looking at a picture of Jack in his airplane seat, smiling so wide it didn’t look like him, sent by his dad as he, Dana and the boys were waiting to take off to Disneyland 5/9 Having coffee, touring show homes, laughing and having lunch with my incredible mother, thinking how lucky I am to have her as a friend all my life.

...because that's what this life is - crazy wonderful and terrible moments all woven together side by side that up close seem to have no reason or logic – but in the end when you step back, the pattern or picture makes sense. But by then you are finished creating the masterpiece and are only able to look at it. So I guess while you are living the moments, beautiful one minute and devastating the next, you simply have to trust the bigger plan and live through the storm.

For Ryan

Not sure where to begin. Ryan's last weeks, his passing and celebration now seem such a blur of incredibly terrible and wonderful moments. Just 4 weeks later, things seem a little blander now. I know he's still around - I still feel his energy in various places and moments and even yesterday at Talyn's 5th "Star Wars" birthday party, visiting with some of his close friends, we felt his smile on us. But I would have preferred one of his big hugs.

As most of you have made the trip over to Tasha and Ryan's blogs (links to the left) over the past while, you will know all about Ryan's passing April 4, 2010. You may even have come to feel like you knew him despite not having a live introduction. And quite possibly you will have been inspired by Ryan and his family, taking on immense challenge with smiles and gratitude. He might have left a little of his energy with you. That was certainly his hope - to leave the human world having simply but positively affected others. He no doubt succeeded.

His celebration of life on May 8th was a reflection of who he was. A guy who approached life with a smile, said what he meant and acted as he said. Colour was everywhere...Starbucks coffee served, laughter, smiles, stories shared of good memories from his close friends and family. Even a pink converse watermark behind the service program and Radiohead playing as you walked out. And of course, the remarks made by Talyn. I had just spoken and was to stay close in case Talyn couldn't speak after all. But he marched up to the front, pulled out the step stool, adjusted the microphone downward with a swift motion and began to talk - a little about the tumour and how his dad told funny jokes. Not a beat missed. Honest and funny, just like his dad. Ryan no doubt was grinning the whole time.

It's difficult to absorb everything that has occurred in the past few months but impossible to communicate. As many of you have heard me say, I feel like our lives are like canvases that receive splatters and drops of paint when we experience, engage and absorb life fully. I am thankful to Ryan for providing me with a whole new layer of texture, colour and shape. I am happy that he is at peace after such a long battle, but we all dearly miss and will continue to miss his spectacular paint. Love ya bro.

A week

Just a quick update on an interesting week. Friday my dermatologist shared pathology results to confirm the skin changes are Graft-versus-host-disease. She called Dr. Brown, my transplant doctor, and he immediately started me on a high dose of prednisone that afternoon. Monday I started PUVA, or light therapy, which means taking medication an hour before standing in a tube that shoots UVA light for a few minutes. I'll do that three times a week and see if that helps stop the rejection.

Today I went to the hospital to see Dr. Brown and he has added cyclosporine to the attack on the GVHD. Cyclosporine is what I took post transplant #1 and 2, and when I had GVHD in the past - it suppresses the immune system as does prednisone. They will also need to monitor for other signs of GVHD (liver, eyes, etc) as well as the host of side effects the prednisone and cyclosporine will provide. I am all too familiar about those - and any of you who knew me in the Fall of 2003 will perhaps recall the "pred-n-zone" I was in for a while. The dose I am on now is less than 2003 but still quite significant, so uncertainty is the key word right now. They will also need to monitor cyclosporine levels in my blood for toxicity, as well as glucose levels from the prednisone and magnesium and calcium levels as prednisone will cause bone loss. And a bunch of other levels and things...

I also saw Dr. Campbell this morning, the plastic surgeon who did the skin graft on my neck in 2006 - he extended my antibiotics another week and will do a biopsy a week from Tuesday to see what is going on there and if it has any connection to the GVHD.

It's all a bit of a blur right now but the summary is really - a lot more medication with a variety of side effects to hopefully counter the rejection disease before it progresses further (the skin spots have increased, thickened and are hardening - they could be debilitating if they continue) - and more treatments and bloodwork appointments.

The good news is that currently the skin is not painful and that they are being aggressive to counter the GVHD. And with Ryan's situation close at hand, I am thankful that it is GVHD and not a relapse.

It is rather amazing what can happen in a week! Good night...

Random life bits from February

Last Friday I was working at one of my clients, the Calgary Zoo, and the controller arranged a quick "behind the scenes" for my audit team and the finance group. This meant over lunch we got to go with the Zookeeper in a trench that runs between the giraffes and the hippos and help him feed the giraffes. I fed around 15 carrots to the mother and father of Sophie, the newest baby giraffe - Sophie just hung back and stood pretty with a "I know I am adorable" look to her. Mom and dad chowed down, slurping carrots with their long tongues and leaning over me looking for a few more. While I was facing the giraffes, the Zookeeper said "just turn around slow" and I did to find one of the hippos had come out of the water and now had his head over the railing where I stood, just a few inches away. He looked at me and opened his gigantic mouth as to say "yeah, so what about those giraffes - check THIS out" - his tongue and teeth and lips were so big and close that my picture couldn't even fit it in. Can't remember what I ate for lunch.

I had a low-grade fever for a few days mid-month and eventually got better without a visit to the clinic. Nice. The rest of the month I spent quite tired...March looks to be better on the fatigue-front.

On a rare night out with Tasha, we took in a most amazing musical experience at Jack Singer listening for an hour and a half, no intermission, no warm up - to The Fray. I downloaded their album when I got home, and wondered if the drummer was single?

Jack and Davis were over at Mom and Dad's for dinner last week and I played "tickle monster" with them as requested - where they bounce on Mom and Dad's bed and I kneel in the middle, stretching my arms out like an octopus trying to tickle them while they squeal. They know my game as soon as I arrive. I hadn't seen them for a while and Jack said "I really missed you". I guess tickling is my forte - Talyn requests "Auntie Tricia tickles" most nights that I see him. The twins prefer the heartier version of my craft. It's wonderful to have something that little boys love you for.

Since December I have been noticing dark spots on my skin - they almost look like bruises, and they have been increasing in numbers, spreading up and across my torso since then and getting darker. My doctor has seen it (bloodwork is all good) and I am seeing a specialist later this week to test whether it is a form of rejection or not - post transplant #1 I had skin Graft-versus-host-disease of the skin and had to do a light therapy treatment so that it didn't thicken. But this is far more extensive - I really look like a leopard from the thigh up to my neck. And then there's my neck which still has an open wound from last summer when I fell and my skin graft was aggravated. Seeing my plastic surgeon next week too and may need another graft. My bandages cost $5/day, and I am really tired of my neck needing to be covered all the time, not to mention how seized up my upper back and neck muscles are while they try to accommodate the wound. Skin is just skin, and I know as long as it's not necrotising faciatus I should be happy, but I am sick of looking at my skin right now.

I have been helping do some creative work to assist in finishing a book that Ryan has created that talks about the happiness you can find even while facing cancer and death. He has taught me so much. Assisting with it breaks my heart and fills it with a unique energy all at the same time.

February I worked a little too much (fixing that don't worry) but liked that a client reported that they loved working with me...nice to know I still know what I am doing at work after a 3 year break. Last night I left the office, worked out with a friend, had a steam and went to Costco, spent too much, bought too much, did another workout to haul all the stuff up from my parkade, watched PVRd Grey's Anatomy and went to bed early. There were so many nights in summer 2006 that such a month and a night seemed totally impossible and an unfair dream. Guess you need to keep dreaming.

Leukemia & Lymphoma Society asked me to be the honoured hero for the 2010 Light the Night Walk in September.

Last summer a friend of my dad's gave me an orchid plant for good energy. I loved the plant - Dr. Aung has orchids all over his clinic in Edmonton. The flowers just seem perfect and simple. In the Fall, the flowers all eventually fell off - I googled to find out that once that happens you are to cut the stems down, so I did. Just 2 little sticks. Months passed. Every week I watered with the little orchid food. Nothing. Sticks. While I was in Maui for 2 weeks in January, I didn't have anyone look after my place. No water for the orchid (sticks), no orchid food. When I came back, I sat down on my sofa and looked over and saw a one inch sprout coming out of one of the sticks! In the absence of water and food, the orchid had not only survived, but it grew. And since then I have watched the sprout grow longer and pop little buds and the buds get larger. And yesterday the biggest bud opened into a beautiful flower....not totally perfect - it has one petal that is like Nemo's fin, but beautiful. Amazing what can not only survive in the face of challenge but grow into something beautiful.

Wonderful Whales, Weddings and Westermans

It is hard to blog when I feel that words cannot really describe the incredible moments I have experienced in recent weeks. But avoiding it doesn't help. From heartbreaking to amazing, the past month and a bit has been very full and I have learned so much more about life and how potent it can be.

As many of you know and can read on Ryan and Tasha's blogs (see side panel for links), the Westermans have been riding a fast and furious roller coaster since the news that Ryan's tumour had broken free of the experimental treatment's reigns just before Christmas. And after being admitted to hospital on New Year's Eve with stroke-like symptoms, Ryan found out a few days later that his tumour had moved to his brain stem, and the doctors recommended taking a hospice bed immediately. It was a surreal concept for a guy so alive. And after a day or so, Ryan took action. Ryan prepared videos for his family to ensure everything he wanted to say is said in case he lost his speech. He wanted to have his "celebration of life" with him in attendance, and so we had a party later that week - people flew in and everyone shared stories of their friend Ryan.

Having been in the room when Ryan's doctor recommended taking a hospice bed, I felt a huge dilemma in leaving for Hawaii a few days later, both because of the uncertainty for Ryan as well as for the support Tasha would need. In one way, Ryan's situation should remind me that things like going to Hawaii were important especially given my own health situation. Ryan and I were diagnosed a few months apart in 1997 and have relapsed several times after a variety of treatment options including experimental ones. On the other hand it seemed ludicrous to leave. Both Tasha and Ryan told me to go, and Ryan said he would be pissed off if I didn't go (said with a large Ryan grin on his face). Ryan's celebration was the night before we were to leave, and he looked so full of life roaming around the room that I truly believed he would be there when I returned.

So I went to Maui with mom and dad - to an incredible oceanfront condo (Dad had found it last minute for half price!) that couldn't be any better. We just walked down to the beach every day (Mom and I with our coffee cups) and boogey boarded (Dad non-stop), snorkeled with turtles or just relaxed on the sand. Or sat on the patio and watch the whales (at least 10 sightings each day) flap and jump and blow spray from their spouts. Or watched at least two weddings take place on the beach in front of us (even started ranking them!). On the few times we left our oceanfront paradise, we had pupus and mojitos at Tommy Bahamas. It was a wonderful holiday and once again I was filled with the Maui energy I have come to love. And aside from a grueling trip home (flights delayed and rerouted and delayed again!) the three of us agree the trip was absolutely the most relaxing we have had.

Dad brought his laptop and webcam, so I was able to keep track of Tasha and Ryan while in Maui, getting the updates that Ryan continued to play the "exception" role he has perfected...very little change from when I left. I was able to show them a few waves on the webcam, report my daily turtle and whale sightings for Talyn and enjoy my holiday even more fully.

And when I returned, I went over to see Ryan and Tasha and found that while Ryan's right side was a bit weaker, not a lot had changed. We had dinner and then Talyn wanted to play Uno with his mom, dad, Baba and I. And after Ryan and I were the last-place finishers in the card game, he pulled out the Connect 4 game to challenge me. I forgot how great that game is - such a simple objective of lining up 4 coloured chips in a row, but so difficult. After much thought and time, I won the first game. The next game I backed myself into a corner without even seeing it and Ryan kicked my butt. And all my worry about having gone to Maui evaporated. This guy was just fine. Who has a tumour wrapped around his brain stem and still beats me at Connect 4? Mr. Ryan Westerman that's who.

The next night a few of us surprised Ryan at dinner at the restaurant Teatro - it was an extraordinary evening - we all shared our favourite memory or story about Ryan and he in turn shared his favourite of each of us. Such pure and honest energy exchanged. Honest tears and pure laughter.

As Ryan describes his new "pad", it is a remarkable place that to me feels like a mountain retreat house than anything. Given his continued ability to push the boundary of the doctors' predictions, it is a great place of flexibility and options that supports what he and his family need. I am very grateful for that and on my tour of the place was even thinking of how to contribute to the hospice in the future. The value it is providing to Ryan, Tasha and Talyn certainly rivals even the progress of research.

As I have told him, Ryan is "writing the textbook" on how to live when you're told you're going to die soon. He has struck a perfect balance of respecting the possibility of leaving this world with respecting the possibility of a further miracle. He has also mastered the balance of "fighting to live" with "living". He has faced the fear of the moment of death. These are all things he and I and Tasha have discussed over the years, in the various contexts of each of our cancer fights. But he is walking the talk and I am inspired, proud and amazed at the way he is able to execute so remarkably the very theories that I aspire to. Cancer or not, all of us should do the videos. Now. We should celebrate life. Now. The risk of doing that is what?

My words cannot possibly report the depth of life I have been fortunate to experience recently. And so I'll conclude. It's just been so many shades of wonderful.