Vive la visite!

The last four days brought me a lot of joy, loyal reader. Indeed, I received an influx of visitors who are near and dear to my heart. Those folks dropped by to see how I wAs doing and if I needed anything. What kindness!

My friends Ashley, Bryan. Dave, Janinei, Stacey and Candida were with us for a fun pow wow on Wednesday. In this place, their support was like a wood stove on a cold night.

On Thursday, Friday (and later today), it was Dynamic Duo time as I was joined by my best man Andrew for some good old movies and TV shows we follow. It’s good to know his life is now back in the groove too!

Friday afternoon was dedicated to board games with my friend Natasha where she taught me The Game of Life and I won my first game. For the second game, we played a cool electronic version of the game.

On Saturday my three colleagues Keagan, Katie and Cindy came by for an hour or so, reminding me how much I miss our monthly dinners. Since Cindy comes from Québec and Keagan is bilingual, they clicked easily with my next visitors.

The most far-travelled visitors of all, my mother Lise and sister Isabelle flew in and came to see me yesterday. Lots of hugs all around and lots of catching up. To make things easier for us, my mother has decided to to come live with us at our place.

Finally’, another awesome friend was with us every day, often ferrying Erica and my family around: Candida, who also keeps an eye out for my safety.

To all of you guys, and to future visitors, thank you from the bottom of my heart for taking time of of your schedule for me. It’s a precious commodity.

The Final Chapter

Here we are, loyal reader, at the beginning of the end. As you’re probably already aware, I am now permanently resident at the Palliative Care Unit. How did I end up here, you ask?

It started last night after supper. Feeling a bit tired I lay my head down on the futon and my faithful phone woke me up at 10 PM to take my pill. After swallowing my nighttime dose, Erica and I realized that, as it did when I relapsed nearly a year ago and when I seized up last week, my brain couldn’t express itself vocally, only to generate random and even made-up words in English or French. My poor wife was scared since it probably meant that the cancer is progressing faster now. I wanted to reassure her but I could not make out the words and every attempt sounded even worse.

Desperate, she called our good friend Candida who hurried to our apartment to have a look at me. After talking with me and poking and prodding, the women decided to call an ambulance to bring me to the emergency room at the Health Science Centre where Erica and I spent a few hours.

The nurses took some blood work and a doctor examined me, but nothing showed up other than my speech, which was starting to get better gradually. We eventually discussed my options. I was entirely free to go back home if I felt safe to do so. I would have loved to, but rationally speaking our stairs were preventing me from leaving, especially if there was a fire. I could also be admitted at the HSC but there was probably nothing they could do. That therefore left option three: moving into a room at the Palliative Care Unit.

Erica and I were transferred by ambulance in the middle of the night in a room on the parking lot side of the PCU. As before, the room is homey and comfortable with a dresser, stuffy chair and flat screen TV.

One of the nurses welcomed us back and asked us a few questions about what had happened. After she heard the story, she figured we must be exhausted and she was not wrong! She brought a pillow for Erica and some blankets. Then she told Erica that can share the bed with me to be more comfortable than on the chair, ir simply for getting emotional support. What a great place to be!

We woke up at 8:30 this morning when we started talking about being here and what the future entails.

I am actually not as upset about finishing my life here. i’ve mulled that eventuality ever since my time here in April. Sometime this week someone will bring me my Xbox and Grand Theft Auto V. I’ll also either set up a Wi-Fi network or increase my iPhone data plan since there is no Wi-Fi here. And I’ll work on organizing my posthumous instructions once more since I lost most of it when the computer crashed.

I also now have time to relax and enjoy not just my video games but podcasts and audiobooks, which I’m very much looking forward to!

You know me, loyal reader. Despite this major announcement, I will make the most of this situation and so will Erica. But I will miss our cats!

Close One!

What a terrible experience, loyal reader! To thank my wonderful mother-in-law, we opted to take her out for supper at City Light. It was delicious and we called a cab for the way back. Burdened by my walker, I carefully climbed into the back seat when I felt like I was in a freefall, getting sucked in between the seats as I lost consciousness.

I woke up a few minutes later strapped to a stretcher in the back of an ambulance en route towards St. Claire’s hospital. I was very confused but managed to stay half-coherent as the nurses asked my wife and I questions about my my medical history.

Erica let the nurses, doctors and I know that I suffered a seizure, with shaking, tongue-biting and everything. Never before have I felt anything like it. They gave me a special medication to prevent them from happening again, then ordered an ambulance to transport me to the Health Science Centre ER to see a neurologist and be admitted.

A CT scan that evening turned out nothing unusual therefor other than taking the new meds there was nothing to be done. After nearly 48 hours, I was ready to be discharged and to go home.

I gotta tell you, loyal reader, that it was no cakewalk. I never felt death springing so close to me. Without warning, my brain was shutting down and I was all out of time. I had wasted, taken for granted what I had left and I felt I couldn’t get it back. I was on the way to my doom.

In and out of sleep I drifted once we got to St. Claire’s and Erica kept the nurses and doctors up to date on my medical information. Since it was a seizure, it was decided to transfer me to the Health Science Centre where I could be seen by a neurologist and given a CT scan. Thankfully the results showed no sign of bleeding in my brain. The doctors decided to keep me a few days, therefore I spent the weekend immobile on a stretcher. Every trip to the washroom was a slow, dangerous slog with a walker. At least previous hospital stays had me in good enough form to walk, sit, read, etc.

Finally, one last fright: a nurse this morning asked me if I could get Erica to come in because the doctor wanted to speak with both of us. Terror overcame me since the last time a doctor asked to see us together was to break the news that my illness was terminal. Erica was equally scared when I called her and wasted no time coming in. Not helping matters was having to wait a half hour for the doctor.

Fortunately, it turns out she simply wanted to discuss if I wanted to be at home, at the hospital or in hospice. After going through the pros and cons, I stuck to my guns and picked quality of life over suffering in hospital. I was then finally discharged and we went home at long last.

I still have mental scars from my ordeal. The memory of disappearing in the cab and waking up is just too vivid yet. I’d gotten so used to living my life one day at a time that I forgot that I’ll someday run out of days, and I might not see it coming. I’m hoping it’ll happen in my sleep, but there’s no guarantees. I may suffer as my consciousness slowly slips into oblivion.

Until then, I just owe it to myself and my loved ones to make the best of it.

Compensating Electronically

I haven’t been posting much in the last week, loyal reader. My mother and sister came to visit us from Québec for two days. It was busy but a lot of fun and I couldn’t be more grateful.

One of the most important things we did during their stay was to visit Barrett’s Funeral Home to make sure everything was ready for the inevitable. My sister will be leading my memorial ceremony, therefore I wanted to make sure she knew what to prepare for.

Last week I put together and printed the funeral program that’ll be handed out to the people attending, so now everyone will be able to follow that. The funeral counselor was mighty impressed and called me the most organized client she ever dealt with. I suppose I may be, but to be honest it’s a question of control: I have no dominion over my illness and especially its symptoms. Especially when it now comes to my mobility.

If you’ll allow me a moment of self-pity, I confess this week has been really hard on me and that’s why I haven’t really been very open either on this blog or the people around me.

I’m basically in the worst physical condition of my life. Walking around the apartment feels like going around on stilts. I can hardly feel anything below my knees. My calf muscles don’t generate enough power to push me back up when I kneel, bend, crouch or fall. The latter happens on a regular basis too, enough to worry me that I’ll eventually get sent back to the hospital with an injury.

The worst thing about it is how utterly emasculated I feel. I find myself incapable of safely and comfortably perform the simplest tasks like sweeping or cleaning the litterbox. Showering is nerve-wracking for fear of falls. And let’s face it, seeing a young man in his prime struggling along with a walker inspires a lot of pity. Hopefully I may soon get a wheelchair, which is to my mind a much more dignified option.

For a proud person like me, it’s all very debilitating. My friends and family tell me to just enjoy things like video games, napping, taking baths, listening to music. On one hand, those are all things I enjoy (except baths but they do soothe my legs) but on the other hand, I feel useless enjoying these things when my wife has to pick up the slack.

When I really need to escape, my last bastion is video games. Wether it’s playing the Masters or controlling vast armies, they engross me in environments where I can exercise control over what’s happening. My real life workvis almost entirely accomplished, so I turn my gaze towards the virtual one. It’s kind of sad, but it has indeed come to this.

A Comforting Place

My sojourn at the Palliative Care Unit of the L.A. Miller Centre opened my eyes to a place I was initially wary of, loyal reader. I’ve had many hospital stays over the last five years, for sure. I always had excellent care from my doctors and nurses but there were many aspects of dying in a hospital that simply were too sad to think about.

By contrast, the PCU forgoes the trappings of the Health Science Centre units I’ve stayed in before. Other than a box for disposing of sharps and needles, there’s no sign of medical equipment, not even those ubiquitous carts for vitals. There is a basic hospital bed but it’s covered by lovely quilts for a warm homey feel.

The furnishings provide plenty of storage space with a dresser, nightstand with extendable tray and a rolling table. A comfortable chair by the bed can be converted into a cot for overnight visitors. There’s also a wall-mounted flat-screen television with free basic cable!

The walls are adorned with pictures as you would find in a nice motel. My window had a view towards downtown St. John’s and the Basilica. Of course residents are encouraged to bring pictures and items to make their room truly theirs.

Altogether the room feels a bit institutional but in a manner more reminiscent of a dorm room than a hospital.

The PCU floor itself has a much more peaceful vibe than my what I’ve lived in at the Health Science Centre or even in Halifax. Especially at the HSC, corridors are filled with fast-moving doctors, nurses, cleaners, supply carts full of medical paraphernalia, visitors, patients, porters and more. It’s always noisy with conversations, the beeps of machines and the hum of floor buffers.

By contrast, residents of the PCU don’t need to be diagnosed, examined or much bothered. The personnel is there to make their lives comfortable. Nurses don’t come in throughout the day and night to record vitals. I never actually had much interaction with my providers unless I called on them or it was time for my pills. I can’t speak for others, but in my case this respect of my privacy and independence is the greatest care I can be given.

One of the perks of life on the PCU is the shower. It’s pretty much a room of its own and is always spotless. The shower has two heads and is molded with a bench for plenty of space and comfort. Towels, washcloths and gel is provided. And as long as it’s not occupied ai could just step in any time.

The one thing that sealed the deal for me more than anything is the food. After years of eating re-heated, bland and plastic-tasting hospital trays I couldn’t bear the thought of going through it three times a day forever. It’d be a constant battle with nausea.

As it turns out, the Palliative Care Unit’s meals are cooked on-site and distributed to residents from the floor’s own kitchen. Prior to bringing in your meal, a friendly volunteer comes to ask you what you would like out of two or three options. Hot meals, cold plates, soups and tasty desserts are worlds apart from what I hadcelsewhere. It tasted as closed to home-cooked as could be. Particularly yummy was a lunch of egg salad croissant served with fresh fruit and a hearty rice soup.

To relax with visitors or just fir a change of pace, residents can avail themselves of a kitchen area that’s lovingly decorated as well as a spacious living room with a large-screen TV. A nondenominational “sacred space” is also there to provide spiritual comfort.

As for visitors, the PCU has no innate restrictions as to the frequency and number, so long as the residents can comfortably handle them and there are no disturbances. Even pets are welcome! And as I mentioned overnight visits are an option with a cot.

The only thing I wish I had available was Wi-Fi service, but that would be easily remedied: if I ever go back I can simply set up a monthly Internet Wi-Fi.

I only so far have spent a few days out at the L.A. Miller Centre. But those days were enough to get rid of all my fears. My number one desire is still to live at home with my beloved wife and cats. But if my comfort and care needs ever exceed what can be done here, I really have no problem moving back into the PCU to die there in peace. Their dedication to peace, comfort and dignity is exactly what I would need.

At the End of Pain, Serenity.

Hello again, loyal reader! It feels good to write again after two weeks. You probably already know about most of the events surrounding but I’ll do my best to catch you up.

Following the start of my new palliative care-centred treatment, things were good. A very low dose of morphine was designed to help me deal with the nerve pain from my leg and eyes. A low daily dose of steroids also aimed to restore some energy and perhaps stabilize my system to resist leukemia and buy time. At first these proved mildly effective in that it kept the pain at least tolerable enough to power me through the necessary duties related to my friends’ wedding. It would take a lot of strength and willpower but I wasn’t about to let leukemia interfere with that sacred day.

Unfortunately the best intentions and love proved insufficient. Two days before the wedding I woke up in the most excruciating pain imaginable. Neither my minimum or emergency booster doses of drug could make a dent in it. I could only twist around on the bed in horror and despair while invisible torturers were scraping, slashing, hacking, pulling and shocking all nerve endings in my left leg and foot. If only I had the words to explain just how bad it was. My screams spoke for themselves: “NO! PLEASE NO IT HURRTS!! NOT THAT, PLEASE! I’LL DO ANYTHING! OH GOD LET ME DIE,KILL ME!!!”

Yes, loyal reader, your proud and optimistic friend was reduced to a sniveling, broken and panicked captive begging his wife and soul mate to kill him out of mercy and love.

Despite the trauma she was witnessing Erica had the presence of mind to contact both the palliative care coordinator and the emergency room at the Health Science Centre. Slowly and very carefully, teeth gritted against the pain we were able to get in a cab to the hospital. Thanks to the palliative nurse’s advanced warning to the ER, I was wheeled to a bed almost immediately where they started administering drugs by IV. Unfortunately none of the dosages or types of medication appeared effective. I couldn’t even handle the feeling of a blanket on my foot. Again I lost my will in a barrage of pain and was begging the nurses and Erica for death.

Eventually an ambulance came to transfer us to the L.A. Miller Centre’s 10-bed Palliative Care Unit. The drive felt like an eternity but we eventually made it. I was put on a bed in a private room on the third floor. Having been briefed of the situation, the nurses took care of Erica as they gave me some very strong sedatives that mercifully had me asleep within 15 or 20 minutes. From the rest of the day, I only remember waking up twice, once with a big tray of food on my table.

And so it was that I ended up spending a few days away from home at the PCU. By the time I woke up on the Saturday of my friends’ wedding, the doctors had finally found the right dosage and type of medication I needed. Instead of 10 mgs of pain killer a day, I require 240 mgs. Steroids needed to be doubled and various other drugs adjusted to protect my bowels, my mood, my stomach and my general well-being.

I’m looking forward to talking about the PCU itself and the amazing people who work there in a future post.

I spent five days at the PCU to make certain that my medication regimen is stable and what I need. I was allowed to go back home with a laundry list of pills to take every four hours. While it is wonderful to be back home, my stay gave me a lot of time to think and to connect with my loved ones. It has changed me, for the better. A lot of it has to do with my body chemistry now. I ‘m also looking forward to exploring these feelings through writing.

As I posted on April 26, Bryan and Janine’s wedding went wonderfully well. The evening before I ended up in the ER, they came to visit me to assure me that they completely understood that I couldn’t be there. What struck me on that visit was how sincere they were too. Two days before tying the knot all their thoughts and love were with me. Bryan especially told me that wherever I was physically, I was still a groomsman. And if you want to know what real true friendship is, consider that after leaving the ceremony, the whole wedding party got on the Party Bus to take pictures all over the city. Their first stop was the L.A. Miller Centre to snap some shots with Erica and I.

I wish them both the kind of love and connection I also have with my own soul mate. Erica has been by my side through all my cancer journey. But there’s nothing that could have prepared us for the emotional toll of that day when I screamed in agony for hours and begged her to end my suffering. Those things cannot be unseen or unheard. She was visibly shaken and a few times had to leave the room for a few minutes because it became too much. And yet, she was there and she stayed, talking to the medical personnel for me and being my guardian angel and guide through an almost literal hell.

The next day once the pain had disappeared, i was ashamed and wracked with guilt to have put the woman I love through that. Thankfully we talked openly about it. She was very scared but she just wanted me to no hurt anymore. Her love for me can’t be measured. No matter how incredibly emotionally demanding and torturous it was for her, she stepped up for me. Now that I am home, she is truly the head of the family. While my vision recovers (more on that in a bit), she organizes my meds, helps me walk to make sure I don’t trip, reads the things I can’t and so much more.

Another very important person with us right now is my wonderful mother in law Pauline who is staying with us for a while to help. She came in from Springdale the day after my admission and has since been a rock to her daughter and I. In all the ways she knows how she has a laugh with us, keeps the apartment tidy, takes care of our kitties. I can’t imagine how things would be without her. And right on time for Mother’s Day too. I’m very thankful that these circumstances have brought us even closer.

So there you have the gist of what’s been going on in the last two weeks. I meant to write sooner and to keep in touch with more of you via text messaging or Facebook but I have been plagued by blurry vision since the middle of last week that makes it very hard for me to read even on my iPhone. That’s why I’ve been functionally blind to the point I couldn’t even make my own coffee for a bit. It has been getting a bit better day by day recently and I do have an ophthalmologist appointment next Friday.

Thank you for your love, support and readership as always. Writing this blog helps tremendously and it lets me interact with so many of you out there. I hope you will join me again soon as we continue this journey together. I assure you that after what happened, I now feel happier and more content than ever in my life.

I’m Only a Man in a Silly Red Sheet

Wow! It’s been well over two weeks since I posted anything, loyal reader. I figure I owe you a little update on how things are going.

To be honest, my health has been in decline over the last few weeks. Graft versus Host Disease has made my eyes very sensitive to light, to the point where I must wear sunglasses at all times unless I am in a dark room. I took my wife to see the new Muppets movie last week and found out that watching movies in the theatre now feels like staring into the sun for two hours. On the upside, the disease is fighting the leukemia, keeping its progress slow and of course buying me more time.

Other than my eyes, my general body and mental health have also suffered quite a bit. My appetite is now minimal and it’s a daily battle to choose meals that do not make me queasy. Most warm, savoury meals trigger a dry heave from me so I have taken to drinking Boost or other breakfast shakes instead of lunch every other day. Thankfully there are still meals I can stomach such as salad, some seafood and some types of soups. With my sensitive teeth, hard or crunchy things are also out.

Going hand in hand with the loss of appetite is my chronic fatigue. I usually end up in bed between 9 and 10 PM and get up between 11 AM and noon, if not occasionally later. During the day, I lack the energy to get much done. Even watching shows I should be catching up on now kind of feels like a chore. I believe the time will soon come where I’ll spend almost all of my time in bed.

Worst of all is the mental and emotional toll. Up until last month, I have been breezing through this illness. But I had it easy. I had the energy to get things done. I had enough strength to set everything up ahead of my demise so my loved ones would be taken care of. I had the fortitude to help my friends and do fun things together. I could enjoy dinner dates at home and out with my wife. Food, reading, driving and going to the movies were my favourite things in life.

It’s very tough to accept that those days are gone. I always felt pride at being able to get things done, even more so when it came to do things for others. I feel it’s our duty to help each other when we can. Now I’m barely doing things for myself. A big part of my daily mental battle is dealing with losing that sense of identity. I’m not the man I was before, and I won’t ever be again.

Compounding this is the image others have of me. Ever since I learned I was dying, people always tell me I’m strong, positive, brave and an inspiration. With my current condition, those are even harder to measure up to. I’m no hero, believe me, but I can’t deny it was flattering and encouraging to be spoken of that way. Now that I’ve gotten it tougher, I feel very much like a fraud. On top of losing my own identity, it’s tough to know others also see my weakness. It makes me ashamed of appreciating their earlier praises and now failing to live up to them when the going actually gets tough.

Those are the thoughts that have been haunting me for a few weeks. Last week it became unbearable and one evening that Five for Fighting song “Superman” came into my head. You know the one that goes, “It’s not easy to be me”, implied to be sung in the first person by Superman. In it the Man of Steel laments that people can’t see his emotional weaknesses through his outer strength. I couldn’t help but break down in tears, a moment that was a long time coming.

For a while Erica held me in bed while I cried and told her all about how I’ve been feeling. It helped so much and reminded me that she’s my rock and my best friend. I tried to be strong for her but I realized I’m stronger with her, by sharing what’s in my heart.

After that night things have been better mentally if not physically. I’m coming to terms with this different life. With Erica’s help I’m finding ways to adapt to my condition. Soon the snow will melt and instead of going out far we will be able to go for little walks from time to time. If I can’t enjoy movies in a theater, then we can find some sort of digital downloads to rent. If I can’t read much, I should look into audiobooks. I could also find new hobbies more suited to my condition like music or cooking or something.

In a nutshell, I can either keep feeling sorry for myself and sink further into depression or I can roll with the punches and do the best I can with whatever I got left in the tank. I’m definitely going to try the latter. It’s not giving up, it’s accepting that once the flavour’s gone completely out of your chewing gum, you need to move on to a different piece.;

The Man in the Mesh Mask

Yesterday wasn’t only Erica and I’s 3-year wedding anniversary, loyal reader. It was also the day of my last dose of radiation. As I explained in my first post on the subject, the technicians created a mask of my face, neck and chest that was molded to my form to securely immobilize me while they were going to zap me with powerful rays for a few minutes a day, for 5 days.

Well it turns out that once the fifth dose is over, I get to keep my mask as a souvenir. Behold!

There is the solid plastic and tight mesh that was strapping me down onto that cold radiation table. On the picture below, check out the clamps attached to the frame:

In the actual radiation room, those bad boys go through slots in the table so the apparatus actually pretty tightly clamps down on my face, nose, throat and upper chest. Claustrophobes should definitely beware. For it to be properly affixed, the mask and frame actually do press down a bit on the patient’s windpipe. Not enough to choke, but you do need to stay calm and breathe carefully, as well as swallow prudently. You can easily breathe through your nose via the spacious enough mesh. That mesh does leave bumpy marks on your skin for a little while of course since it’s pulled taut on your skin.

Overall I would say for most people the experience would not be a pleasant one given the feeling of mild strangulation and being strapped down but the comic book geek in me just couldn’t stop feeling like some badass volunteering for some sort of cool super-soldier experiment!

The radiation blasts themselves were completely painless. The machine would whirr for a few minutes and occasionally cast a blue light on me, which I presume is the radiation. Curiously, that blue light also brought with it the brief smell and taste of laundry detergent-laden water.

While without the actual clamping process it won’t convey how taut the mask was on me, here are two pictures my wife took to give you an idea of what I looked like wearing it.

Sweet dreams!

Kicking the Bucket List

A lot of people lately have been asking about my bucket list, loyal reader. It’s been a common topic in pop culture over the last few years. Movies like, well, The Bucket List or shows like The Big C show us terminally ill characters going on crazy adventures to enjoy life before the end.

Right after I received my diagnosis of terminal leukemia, what I had on my bucket list became pretty much the number one topic of conversation from from my friends and family. It makes perfect sense when you think about it. They say that the first stage of dealing with grief is denial. And what better way to deny death than talking about ways to be as alive as possible? Instead of focusing on the bad news, we can have some fun. It was a perfectly normal reaction and I was not immune to it either. Like my loved ones, I was experiencing that denial stage and of course I was eager to leave the hospital I had to be confined to for a week and a half.

Making up a bucket list was a bit tricky, especially since I’m not a crazy-adventure or traveling guy. Mostly I wanted to do the things my friends and I kept talking about but putting off: do the zip lining course at Petty Harbour, having a bonfire together at Topsail Beach, trying out a poker tournament at Dooly’s. To me those things were big and awesome enough, and feasible. Things I wanted to experience at least once with those I love.

Of course, I am lucky enough to be surrounded by people with much bigger dreams and ideas than I so my loved ones and I got to experience some of the most amazing moments of our lives in the last month. Those were true bucket list dreams too and I have no intention of trying to top them.

After we returned from our bucket list getaways, things progressed. As the days passed, my emotions and those of my loved ones kept taking their course. After denial came anger and stress on my part. A lot of it. Thankfully, my family and Erica were close and they got me through it. I actually ended up opening a lot more to my parents and sister than I ever did in my life and it changed me for the better, helping me and they move together towards the acceptance stage of grief.

In addition to this new sense of acceptance came the realization of my new physical limitations. My energy is not what it used to, my legs can’t perform all the duties I used to ask them to do, such as hopping across an intersection. My hand muscles and my calves regularly cramp up without reason. So things like zip lining simply aren’t possible anymore.

In pop culture bucket list stories, often the characters get to do crazy things because they don’t start getting too weak until the third act. But in real life, at least in most cases, a terminal illness like mine is a much steadier decline. Along with the physical decline, however, I find that my whole outlook on life adapts.

At this stage of the journey, I’ve accepted that my life’s story is coming to an end in less than a year and that I am very happy and satisfied with how I enjoyed the good things in life. I realize that I am transitioning from an active life to a more passive, caretaking role. For example, right now my biggest wish is to hear the final word from the disability insurance people so I can know what our income is going to be every month. Once we have that figure nailed down, it’ll bring us the security of being able to budget and plan, rather than having to worry about paying the rent this month. In this period between the last of the work money and the first of the disability payments, the loss of financial control is more pressing and can’t really be replaced by a night out on the town.

So when people now ask me for what’s next on my bucket list, they still want me to come up with travels, expensive dinners, parties, things of that nature. I can understand their point of view. Accepting my fate and reorienting my life’s satisfaction based on paving the way for others may seem like giving up, but it is far from it. I’m simply putting more emphasis on how I want the future to be.

My new bucket list still has items for myself, don’t worry. But they are more aligned to my new reality: I intend to play a whole lot of Batman: Arkham Origins. I intend to grab a Smokes poutine with the b’ys and go see our movies. Erica and I will revisit our favourite restaurants once in a while.

Overall, bucket lists are a fun and great part of the transition between life and an incoming death. They are an important celebration of the joys of life. But the definition of those joys can and should change as life itself winds down. The dignity of a peaceful and serene last chapter in one’s book is just as valid as a great honeymoon.

Third Act

As you probably know by now, loyal reader, I come back to blogging with some bad news. I was brought to the emergency room at the Health Science Centre on the night of the 17th of September when I started losing my balance, my lucidity and eventually my ability to put words together or even remember my name.

After a week or so in hospital, tests revealed that leukemia had returned, this time in my brain and spinal cord. Unfortunately there is no cure and my days are numbered. Targeted radiation treatments may give me a bit of time and relief but it’s just a matter of time now. We don’t know how much. Months? A year? Two? I really don ‘t think it’ll be any more than that.

It’s a big realization. But to be honest, it brings a lot of peace with it. Most people have to worry about their future: retirement, health, projects, a house, work. Knowing my fate allows me to let go of a lot of those worries and focus on life in the present surrounded by friends, loved ones and my beloved Newfoundland.

I cannot believe how lucky I am to be here or to be supported by so many amazing people. My friends Andrew, Bryan, Brian, Dave, Janine, Ashley and Stacey were by my side lickety-split to talk and cheer each other up and make plans. They are such a source of strenght, especially in these times that are already so hard for some of them.

My family back in Québec did not waste any time either. My amazing sister and her beau Ugo picked up my mother and hopped on the first plane they could and were here before I was even discharged from the hospital. My father made the drive shortly after. It was a great reunion and they took such good care of Erica and I. We got the chance to show them our beloved city too and they will be back. Sharing my favourite place with my family was truly another dream come true for me.

Of course, this situation is hardest on the one I love most, my wife and soul mate Erica. The hardest thing about it is knowing I’m leaving her behind eventually, despite vowing to grow old together. But at the same time I feel like the luckiest man in the world to have had the chance to be with her, even for just a few years. Knowing what is coming I want to spend the rest of my time making her as happy and loved as she has made me. The time we have left is going to be the best of our life, sweetheart!

There is also another amazing group of people who have gone absolutely, greatly above and beyond for us since my diagnosis: my incredible colleagues at the Canada Revenue Agency. After learning the news, I e-mailed my closest teammates as well as my team leader Heather. I hated to start their days on that note but they had to know.

Very soon I started receiving messages from a lot of people from everywhere at work. My biggest worry was what to do about paperwork, insurance coverage and just making sure I and Erica have a but of security. As you know, paperwork and unfamiliar processes scare the pants out of me.

Thankfully resourceful and strong Heather and Mary, another team lead of mine went the extra mile to prepare all the papers I needed. The day after my hospital discharge, I went into work one last time.

Walking into work was emotional. Familiar faces came to see me for hugs and kind words of support. I feel so blessed to have met these guys. Never have I felt so supported.

I also had the priviledge of one last lunch with my two closest teammates and it was an absolute pleasure. So much offer of help and future get-togethers were made. Truly I am blessed.

Finally, the afternoon allowed me to sit down with Mary and Heather to straighten away my paperwork and figure out what I needed to do. Those two guardian angels had looked into everything to make the process as seamless as possible for me and I couldn’t be more grateful.

But the greatest thing came after the paperwork talk was done. My coworkers all over the site had a few surprises in store for me.

Join me tomorrow for my next post, in which I’ll let you know how colleagues, strangers and local businesses came together as an absolute miracle for Erica and I. You will not believe the love and generosity we have experienced!