Friday, August 23, 2013

living in the moment

I don't write very often any more. I suspect that trend with continue. I often start a post without a central theme or idea, but rather, a simple desire to write and record. I am left with random sentences, disconnected thoughts, and miserable attempts to articulate a range of emotions at various ends of the emotional spectrum. In truth, I suppose that there is a lot less to write about, and that, in itself, is very positive. 

We are settling back into some form of normalcy. It is our pleasure to adopt a monotonous rhythm to define our daily lives. We don't need the thrill of living on the edge of survival to motivate ourselves to feel alive. We accept an ebb and flow that allows for change and circumstance beyond predictions. We embrace the uncertainties of the future (and reserve our expectations for the immediate future). 

That is, James and I live in the present. I love being able to live in the moment, and from one moment to the next. That was not always the case. We were forced to live from one moment to the next. It was a means of survival during those long pre-transplant months. Now? It is a conscious choice, or rather, a shift in perspective. It is among the most important lessons of our experience. It is a form of freedom to be able to accept that which is beyond our control. 

We still have fears and anxieties, but James and I do not allow them to define our lives. We reserve our energies. We take advantage of the present. We appreciate these moments with incredible depth, because, well, James and I live with the foreboding knowledge and awareness that this could have been different. We could have had a very different outcome.

How can I explain this level of gratitude? Our lives will never be the same. We experience everything in relation to the alternative. Survival was never a guarantee. 

James might be nauseous, but James has to be alive to be nauseous. 

James might be short of breath, but James has to be alive to be short of breath. 

We accept it all over the alternative. We are forever grateful for another chance at life. We want all these possible and precious moments. There will never be enough of them.

Tuesday, August 13, 2013


I packed four boxes this afternoon to ship our belongings back home to British Columbia. There will definitely be another three to four boxes to pack. We have managed to accumulate a lot in this last year. We had twenty-four hours to pack and get on a flight to Toronto. We arrived with a single suitcase, large backpack, and a miserable feline (with few thoughts for household necessities, or winter preparations). Our comforts from home were shipped in the following months, along with a lot of thoughtful gifts of support and encouragement from family and friends in different parts of the world. We managed to create a reasonable home environment in Toronto, but James was rarely outside the confines of Toronto General Hospital, (spare a few weeks here or there).

I am proud to report that I am leaving with a single box of books. That has been a serious act of self-control. Of course, I was rarely able to focus enough to read during those long months, and I am starting to embrace the convenience of e-books. On the other hand, I cannot make the same claim for my accumulation of knitting projects. We are thoroughly prepared for a rare winter storm on the West Coast. The rest of these boxes are complete with miscellaneous art supplies, board and card games, and gifts from the last year of holidays and celebrations. 

A large majority of household items and furniture will return to the street. Toronto has been very generous with curbside furniture in reasonable condition. Spread the world in the transplant community: James and I have a lot of household basics to spare and share. We bought everything from garbage cans, to a broom and mop, baking utensils, and a cutlery drawer organizer. We discovered the need for a can opener after a long day at the hospital. A corkscew was also a necessity for survival. We would love to find these items a home rather than send them to a landfill.

This is the first major step in preparation (and acknowledgement) of our move. I feel the excitement starting to build, but I also feel very disconnected and almost mechanical in preparation for our move. We are still in shock. There is a lot of disbelief. We are only beginning to surface from the painful experiences of this last year in Toronto. We want to be able to completely embrace James' health, but I am waiting for the fear to subside. 

We move with cautious optimism for the future. James has only been well for a relatively short period of time in comparison to the last year of living on the edge of survival. We are confident that James will continue to heal, but it is exceptionally hard to let go of the past. I suppose that James and I also need to pack away these memories. They should only serve as precious reminders of the precarious nature of our lives. This is an essential perspective to continue to live with gratitude for each and every moment together.

I cannot end this post without a word to James' health. There have been few changes. James' immune status is a lot better in regards to the dangers of low white cell counts. We are also seeing improvements in James' blood glucose levels with on-going Diabetes Education at the CF Clinic. He is a lot more stable with the addition of a second type of insulin. His physiotherapy regime includes regular increases to frequency, duration, and intensity of exercise. His lung status remains the same with a slight increase in capacity for exhalation. 

The largest concern is James' nutritional status and weight loss. He continues to face daily episodes of nausea and vomiting, and has to force every bite due to a complete lack of appetite. This should not come at a surprise. James has long-standing gastrointestinal issues. He also has to re-learn the use of his digestive system after nearly seven months on Total Parenteral Nutrition (a nutrition delivery system directly into his veins). He has been doing well the last few days with high calories smoothies and milkshakes. It seems to be a lot easier to manage liquids.

Finally, a word from James: 

Hi everybody, 
Thank you so much for all your support. I can't wait to be back in Victoria and to see all my friends again.
Love, love, love!

Tuesday, August 6, 2013

home in the distant future?

I confess. I still have not taken photographs, but the intention is still there. We are busy. We are busy living. We are simply loving all our time and enjoying the sweet moments together in our shared space. A few hours at the hospital here or there do not ruin the day. We read together in the park and peruse bookstores, go for evening walks (with the incentive of ice cream on a summer night), cuddle up with movies (and our latest discovery of pure deliciousness: popcorn drizzled with chocolate), attend to our very demanding feline, and are re-discovering a love for cooking and meals together. (It shouldn't be a surprise that I am the one gaining all the weight that falls from James without a constant stream of calories). 

What else is there to share? The Transplant Team is pleased with James' progress (and there is no reason to argue). James remains a celebrity at the hospital. We love being able to share in his health with his dedicated team(s). We meet ICU nurses in the elevators, perfusionists by Starbucks, and doctors in the hallways. Everyone glows with happiness for a real success. There are always a lot of hugs and smiles, and even some wet eyes. We have come a long way from our seven months in hospital. It is a relief to be able to leave the hospital with James by my side. 

Other news? James continues to excel in the Treadmill Room. He has doubled his time on the treadmill and stationary bicycle, and increased all of his weights. We continue to navigate through an insane schedule of tests and appointments. James and I are still holding out for hope that his lung function will improve with time, but that is not to suggest disappointment or discouragement. We are on the right track and moving in the right direction. The same can be said about all aspects of his health.

Did I mention the best news of all? We have been given permission to head back home to British Columbia after James' 3-month post-transplant assessments. That's right. James can complete his mandatory physiotherapy back in Victoria. We are going home in about a month. Can you imagine? It is completely surreal. I don't think I can even begin to process the last year in Toronto. It is still a shock. I am still in shock (with some ICU-induced PTSD for the sake of being pathological). When will it feel real? Will it take an airplane ticket (and a miserable feline under my seat)? What about sleeping in our own bed? How with Dorothy, Xanadu, and Bombay react? (I am certain it will be with feline indifference). We are thrilled, to say the least. 

Thank you for coming along for the ride. Love, love, love.