Sunday, September 30, 2012

one month in Toronto

We have been in Toronto for a month now. This seems absolutely insane to me. Time seems to simultaneously disappear in the chaos of crisis, but also seems to slow in the every day moments of simply being in this world. This is the well-known illusion of time.

James was in the hospital for the first couple of weeks in Toronto. Those weeks were defined by the infinite boredom of hospitals (and loneliness of the long nights apart from each other). The uncertainties of those weeks has remained, but the sense of urgency has transformed into an acceptance. The following weeks gave way to the process letting go of our grief, re-framing our thoughts and feelings, and determining a level of stability, in all sense of the word (and world), and despite the continuous unknown.

My blogging doesn't seem to change. I write the same words in different combinations. I repeat the same script (both in writing and out loud). The translation is the same: James and I are still waiting. Our lives are one hold. We are forced to move from one moment to the next (without taking a single second for granted). Yet, I am always aware of the surrounding world. It continues to move at an unfathomable pace.  How do I make sense of all this? The background of our lives is a constant a blur of packed streetcars, hurried conversations, and never-ending meetings and appointments. The streets are still crowded and polluted with noise long after James and I close our eyes. We are always slowing down and holding our breath. We want that illusion of time; the one that will last well beyond the statistics and realities of our situation. We need that illusion of time.

We meet with the transplant team tomorrow. It will be a long day. We are hoping for answers. We are hoping to hear something different. We are also preparing for otherwise. We may need to remain static (even in this never-ending motion). I suppose it might be another form of balance. We are good at balance. We balance each other.

Saturday, September 29, 2012

seven dwarves

7 dwarves of cystic fibrosis:


7 dwarves of lung transplant:


love for st. michael's

St. Michael's Cystic Fibrosis Clinic in Toronto has an incredible history of life-saving and life-enhancing research and advanced treatment in the field of Cystic Fibrosis over the last 20 years.

When James arrived in Toronto in November 2009, St. Michael's resolved James' life-threatening gastrointestinal problems that were preventing him from qualifying for transplant. James become stable and was able to gain enough weight to become a candidate for transplant. St. Michael's helped save James' life.

We will always be grateful for the love and care at the CF Clinic. They are an incredible team of dedicated professionals and specialists.

Here is a video that documents and celebrates the last two decades:
(Do you recognize that good looking couple at 2:10?)

Friday, September 28, 2012

surprise from home!

James' good friend arrived on Wednesday in the middle of the night from British Columbia to surprise him. James was (and is) absolutely thrilled to have a friend from home. Our spirits are lifted. We definitely needed a good distraction.

We will head to Toronto Islands in the afternoon. I will update again tonight, or tomorrow morning.

We are sending out love, love, and more love.

Update: We had a great day (and that would be an understatement). It is lovely to take a break from hospitals and focus solely on having fun. We were filled with laughter and energy. We will sleep well tonight, but it is the good kind of exhaustion.

Here are some wonderful photographs from the day by our friend, Kendell, yogi and photographer (

James and I are very grateful to have an increasing collection of photographs together, but I should admit that I have always been hesitant about being the subject of a photograph, and I prefer to hide behind the camera. That being said, I love to be able to document our time together into a permanent collection of shared moments. We also have another friend back in Victoria with an incredible talent for photography. She generously made herself available last minute to take a beautiful series of photographs before James and I had to move back to Toronto. We love all these photographs. We love our friends.

Wednesday, September 26, 2012

esophageal PH study results

This is a difficult post to write. I'm feeling very emotional. James and I received some disappointing test results. We are both feeling a lot of anger and frustration, but I can't afford the energy to hold onto negative emotions. This will be another process of acceptance and letting go.

In Victoria, James had an esophageal PH study to determine the level of acid in his esophagus. This was a miserable experience for James. He was required to wear an electric sensor and have a tube down his nose for a twenty-four hour period of monitoring. Microaspirations are a known cause of bronchiolitis obliterans. This is a form of gastroesophageal acid reflux from the stomach into the lungs that causes inflammation and tissue damage. It is very common in individuals with Cystic Fibrosis. It is preventable and treatable through a combination of laproscopic surgery and medication to reduce acid levels in the digestive system. 

The study was recommended following James' drastic reduction in lung function with no known cause. We have since learned that the study is standard for many pre-transplant patients with Cystic Fibrosis at some transplant centres. This is a proactive strategy to detect and treat microaspirations prior to transplant to prevent post-transplant bronchiolitis obliterans.

James was required to stop taking his gastrointestinal medications in the days prior to the esophageal PH study. At that time, James was in the hospital recovering from sinus surgery for a nasal obstruction and nasal polyps. (This is also very common for individuals with Cystic Fibrosis). His lung function started to decrease in the days following his surgery. We both suspected that this was correlated with the discontinuation of his gastrointestinal medications, but it was also possible that it was a delayed response form the anesthesia.

We waited several weeks for the results. We inquired almost daily during James' inpatient hospitalization. We finally decided to get in touch with James' transplant co-ordinator form British Columbia. She informed us that the results had been faxed to Toronto several weeks ago. James' results were abnormal. James has high level of acid in his esophagus. 

We are waiting for more details. We need more information. We hope that the damage is not permanent. We cannot increase James' medications that reduce acid, because of a dangerous interaction with his prophylactic antibiotics. We will inquire about a repeat test without the discontinuation of James' gastrointestinal medications. We will also inquire about the laproscopic surgery to prevent further microaspirations, but James' may not be a candidate for anesthesia, because of the dangers associated with a decrease in lung function.

That is all for now. The only other news is that James will no longer be attending the transplant gym. He will have to wait for a further decline in lung function or for his official listing on the transplant waiting list. We knew this was possible. The gym has limited space. The priority is for individuals on the transplant list or immediately post-transplant. We will continue to do physiotherapy independent of the transplant gym.

Monday, September 24, 2012

no longer homeless!

James and I have good news to share. We signed a lease for October 15th. It is a 6-month lease (and month-to-month afterwards). We officially have a home in Toronto. It is directly across from the hospital. It has a single bedroom, a lot of closet space, and a bright view of downtown Toronto. We will also have access to an exercise room for James' physiotherapy and of course, for my sanity, to some extent.

We are meeting more (and more) wonderful people at the transplant gym. There is a very positive energy of hope and optimism in the room. We continue to enjoy sharing stories amongst individuals pre-transplant and post-transplant. The level of support and encouragement is incredible. There are no words to describe the courage in that room. I will often feel a wave of sadness watching someone struggle for breath, but there is always laughter in the background to bring me back into the present.

James pushes himself very hard at the gym, and tends to collapse into exhaustion back at home. He is sleeping more and more these days. I wake often during the night to check on him. His breathing has become very shallow and almost silent at night. It scares me and I will reach out to feel his skin for warmth. It is a significant contrast to the last year of gasping for air and loud snoring from a complete sinus obstruction. 

James and I want to share our gratitude. It is important to keep our focus on positive.

We are grateful for each other. We are grateful for each and every day together. We are grateful for friends, family, and community. We are grateful for hope and optimism. We are grateful for access to health care, and a team of genuinely caring experts and specialists. We are grateful for deep sleep, and of course, good food. We are grateful for feline friends and late night cuddles (both from each other and Ophelia). We are grateful for gratitude itself. It is an excellent reminder to appreciate the present moment.
These photos are from our temporary home. We are looking forward to moving into a more permanent living situation. It will be lovely to have more than a mattress on the floor, but of course, all you need is love, love, love.

Sunday, September 23, 2012

end of weekend update

James and I seem to be settling in to Toronto, and re-establishing a relative sense of normalcy, or in the least, adjusting to the reality of our situation. There will continue to be a lot of uncertainties in the coming weeks, but James and I refuse to live as though our lives are on hold. We are starting to plan for a foreseeable future in Toronto (with some degree of enthusiasm for everything that the city has to offer a couple of dreamers).

It has been a difficult transition. There is a process of letting go, or rather, a re-framing of our dreams for the future. We need to allow ourselves to envision a different future (without holding onto grief). We have not lost our dreams. This is simply another path to them. We still have the shared happiness and joy that defines our relationship. We find hope and optimism in each other. I have said it before, and I truly believe that James and I grow together in strength through the adversities of life. We are not strangers to the pain. It only serves as a reminder of the importance of gratitude. We take full advantage of our time together from one moment to the next. We look to each other and smile. There are still reasons to celebrate.

This weekend, James and I enjoyed some relaxation and fully met our cuddle quota for both canine and feline friends with four dogs and three cats at my father's house:
We also went to Word on the Street. This book and magazine festival was also the location of our third date together. We visited The Grid booth and started a discussion about Dating Diaries and a possible re-print of Jon and Amy, a well-received story about our first date (with pseudonyms). We hope that in consideration of the positive reception, James and I might be able to raise some awareness about the importance of organ donation (and low donor registry rates in Toronto at only 13%). Of course, there is also hope that publicity could also help in our personal campaign to finance our re-location to Toronto for transplant. We spoke with a writer at the booth. Our story was immediately recognized, and a nearby couple even requested a photo of us. We were encouraged to re-contact Dating Diaries about these inquiries.

We continued to walk around with silly paper crowns, browsed through books, magazines and comics, and enjoyed an ever so inspiring talk and interview with David Suzuki and Jeff Rubin:
James has an appointment with the Toronto General Hospital transplant clinic in about a week. We hope to gain a better sense of his prognosis, and the course of treatment available, including assessment and evaluation for a second double lung transplant. James' lung function appears to be stable (with some normal variation in both directions), but I am weary of the weight loss (and a history of gastrointestinal problems that have been associated with James' weight status). I am learning to become an active and assertive advocate, but I also have a tendency towards feeling overwhelmed and helpless. It is a fine balance.

That is all for now. We are sending out love, love, and more love. 

Friday, September 21, 2012

a day in kensington

We enjoyed a day in the market with a focus on the joys of being alive. We don't need to find reasons to sing and dance each and every day. We know that importance of laughter and fun. Here are a collection of photographs from the day (with a requisite photo of a furry friend, because James' days are never complete without befriending a squirrel or two):

love. love. love.

Wednesday, September 19, 2012

transplant gym

It is strange to be back at the transplant gym. We hear a lot of stories. We share our stories. There is a lot of community-building and a transplant "family" is formed. There are even a few people from James' pre-transplant days. Most of them are recent transplants. (James was at the transplant gym for 3 months post-transplant, and it has been 16 months since his first double-lung transplant. These individuals would have been on the waiting list for longer than a year).
James at the Gym in June 2011 (1 month post-transplant)
There are very few young adults in the gym. The vast majority of elderly seniors awaiting lung transplant. (The stories of COPD and emphysema are painful to hear. Many of these individuals are only a few years younger that my Bubie would have been, but I do not believe she would have been a candidate for lung transplant. She also had advanced lung cancer that resulted in the removal of a third of her lungs a few years prior to her death).

Today, James and I met another young man with Cystic Fibrosis (from across the room). We were not able to talk with him, because the risk of cross-contamination and shared infection is high among individuals with CF. We are required to remain on separate sides of the room. The transplant gym makes all efforts to create separate schedules for individuals with CF. 

It was clear that this young man is pre-transplant. His cough was reminiscent of James' pre-transplant days. There were hours and hours spent coughing up phlegm and sputum in the morning (and throughout the rest of the day). James had to exercise with a garbage beside him. We do not miss these days. It was hard for both of us to hear, but at the same time, I have a hard time remembering James' constant cough. This is the definition of being blinded by love. The same can be said for James' malnourishment. He was 90lbs (and all bones). Now, I cannot look at photographs from our first year together without feeling nauseous. He was dying (and close to death in those last few months). I don't think I really let myself feel or know the extent of his illness. We just focused on a single day at a time. We are doing that again, but I cannot lie to myself. I cannot deny the gravity of our circumstances. We have been here before, and it is all too familiar.

Tuesday, September 18, 2012

rosh hashanah

Last night, James and I celebrated Rosh Hashanah (Jewish New Year) with my family. It was a small crowd around the table. The absence of loved ones lost in the last year was strongly felt by all of us. We shared stories and watched videos, but there is still a lot of pain and grief. I held James close, and I asked for a lot of photos to be taken. I have always hidden behind the camera, but these days, I want to document every moment I have together with Jame in shared love and happiness.

He is looking good for someone in lung failure.

We also went to the transplant gym in the morning. James worked really hard, and then, fell asleep in complete exhaustion for most of the afternoon. I'm so proud of him. That never seems to change. He is working at about the same level as he was pre-transplant, but with a significant difference: He is not on oxygen. We looked around the room. There were a lot of people in dire need for lungs. We shared similar thoughts: James is not sick enough for transplant (despite his decline in lung function to 25%). This should come with some reassurance, but it is devastating to imagine that James may have to deteriorate a lot further before being considered a candidate for another double-lung transplant. 

We are feeling very lost. It is not safe to return to Victoria, but James is not ready for transplant. His body is compensating for the decline. We are playing a waiting game. We have no certainties for the coming days, weeks, or months. We can no longer conceptualize a form of stability for James' health. (Can stability exist at 25% lung function?). We really have no choice. We have to take it one day at a time.

Monday, September 17, 2012

Sunday, September 16, 2012

imagining a future

First, I feel to need to mention that sleep is incredible. It seems to that sleep, in addition to exercise (as I wrote about in a previous post), is also essential to obtaining any sense of normalcy in my life, that is, in terms of my ability to cope and function on a day to day basis. It is wonderful to finally be able to sleep again. James has been discharged from the hospital, and I suppose that all I needed was the comfort and security of knowing James is safe (and sound asleep) beside me.

I have been working really hard to re-frame my thinking, and I suppose, to some extent, to challenge the intensity of this grief, or in the least, to make more sense of it. I mean, I understand that that some degree of anticipatory grief is within reasonable expectation. James and I are navigating through a very scary time in our lives. We cannot avoid end-of-life discussions and decision-making. It is impossible to completely negate these fears (without knowingly lying to ourselves). Rather, James and I make all attempts to speak with a language of hope and optimism. I try to dissuade my feelings of grief with a focus on gratitude for each and every day I still get to hold James in my arms. James is still alive. I also allow myself time to grieve, because I believe in honoring a need to truly feel the true extent of my emotions. That being said, I need to be cautious about my tendency to become overwhelmed with emotions, and the depression that seeks to engage with any or all opportunities of vulnerability and fragility. 

I think that I am also grieving for a fundamental change in our relationship. This involves the ability to imagine a future together (as the title of this post alludes to). This is hard to explain, and I'm not certain whether I will be able to accurately articulate or express it, but I will make an attempt. I also believe that it is not something that is lost. It is a change that James and I can control. We just need to find a way to re-claim it within our current realities. We need to allow ourselves time and permission to grieve for the future from our dreams, but at the same time, there is need to create a different dream for ourselves. We may still be processing all this rapid change, but James and I should not limit the ways in which we imagine a future together.

Let me explain further. When I met James, I really had no ability to imagine a future for myself. I truly could not conceive of a future without the throes of depression. I didn't know that this level of love and happiness was possible. On the other hand, James was oxygen-dependent and struggling to gain enough weight to qualify for a double-lung transplant. James depended on the dreams of a future for survival, but it was difficult to remain positive with recurrent hospitalizations (and not to mention, the loneliness of being a in a foreign city). We both struggled to find hope. James and I did something incredible for one another: We imagined a future of our dreams together. We created dreams based on a hope for a shared future. We gave each other reasons to live. (I think it is important to make a distinction here. We gave each other reasons to live. This is different than being each others reason to live). We gave each other reasons to keep fighting. Thus, I truly feel as though imagining a future together is a fundamental aspect of our relationship.

This photo was the first of us taken together, a few months after James and I met, and already imagining the possibilities:

Here we are again in our first photo together post-transplant with endless possibilities for our hopes and dreams to become realities:

Our wedding was a testament to the possibility of these dreams. It truly was a celebration of life. The future of our dreams never felt more possible. It was only two short months ago, but James and I have spent few days since outside of hospitals. We went immediately from entering the next phase in our lives (and the beginning of our lives together) to a devastating crisis of potential death. I do not believe that we were naive, but there was certainly an illusion of health, or in the least, a sense of stability. James had an incredible year post-transplant with few to no complications. We were not prepared for his rapid deterioration.  

We both agree: We feel simultaneously very old and very young. We have had a lifetime of experiences in our two years together. 

That is also another important part of all this to place in context. In many ways, I think James and I were still recovering from the trauma of his first transplant (and the following year of long-distance relationship). I had emerged from the severity of my depression in our first year together (and the ECT that left permanent blanks in my memory), but the recent death of my Bubie left me feeling fragile (and vulnerable to another episode of depression). There was a lot of transition and change (to say the least). We were still putting the pieces of our lives back together. 

Now, James and I must create new dreams for ourselves, for each other, and most importantly, together. Some of these dreams may be the same as those from the past. We can find a balance between living one day at a time (and from one moment to the next), and creating a world for our future together. We don't need to let go of them all. It is the hope for something different that makes imagining a future together possible. We need that hope to the same extent that James and I need to focus on gratitude for every shared moment.

Thursday, September 13, 2012


Exercise is amazing. Did I mention that I love exercise? Thirty minutes of weights in the gym, and I am significantly more stable (mentally, that is). I start to feel human again, or rather, I feel something that I would assume to be in the human-like range. What does it mean to feel human? Perhaps, I simply mean that I feel more alive, or in the least, more able to function. Perhaps, I might need to experience a certain amount of sleep on a regular basis before I can be expect to be able to engage in a philosophical discussion with any degree of insight or intellect.

It is early evening, and I have returned home to make dinner (and of course, I went to the gym. Did I mention that I love exercise?). James is back at the hospital in a benadryl-induced sleep. He is eager to complete his last treatment and be given his discharge papers. The muscle jerks and spasms that were reminiscent of James’ past dystonic reactions to various anti-emetics have started earlier in the treatment process, after the administration of benadryl, but before the thymoglobulin. We are starting to suspect that it may be an allergic-type reaction to the benadryl, or even a psychosomatic response in anticipation of the anti-lymphocyte globulin. Regardless, James’ best defense is to close his eyes, and hope for an extended period of uninterrupted sleep to get through the process. He is insanely tough (and very tolerant of the constant checking of vitals, and the disruptive environment that invariably is the hospital).

James’ lung function appears to be stable at 25%. This is good news to the extent that it does not represent further decline. It could be weeks before the potential effects of this treatment are known. In the past, James and I have been cautiously optimistic (within reason). This is different. We know the efficacy of this treatment is rare. Our understanding is that individuals with acute cellular rejection tend to have a positive response. That being said, James does not present as acute cellular rejection. His rapid decline is more suggestive of bronchiolitis obliterans. This was the diagnosis given a few weeks ago. It is a diagnosis of exclusion for deterioration with no known cause. We are willing to make all efforts to recover lung function, but it is not clear whether this is possible. The damage may already be permanent. This is impossible to know at this stage.

James is struggling for breath with any or all exertion, including slight inclines, fast pace walking, climbing stairs, and even light stretching. Nevertheless, James’ oxygen saturation remains within the normal range. This is a good sign. He does not require oxygen support. On the other hand, it seems as though James’ heart is compensating for his low lung function. In the past, James had to work exceptionally hard to increase his heart rate to an aerobic range. This is no longer the case. James’ heart pounds from a couple of stairs or even several minutes of stretching. This is followed by throbbing headaches, extreme shakiness and fatigue, and a sense of weakness and complete breathlessness.

James is learning to take it slow (or at least, slow down), but he does not want to lose the benefit and hard work of the last 16 months since his transplant (and longer). He has been able to build incredible strength and endurance. We enjoyed hiking, swimming, and bicycling. We were lifting weights several times a week.

Here he is in the Gulf Islands Driftwood in February 2012:

and another from only a few months ago:

We have been asking the hospital for guidance over the last couple weeks of James’ admission. We made several requests to be seen by the transplant physiotherapist. We continued to inquire on a daily basis to each different doctor and nurse. We were finally able to meet with the physiotherapist this afternoon. She was wonderful and completely sympathetic to our situation. She understood the importance of maintaining James’ exercise regime (both for his physical health and as an appetite stimulant) and went to the transplant gym to advocate for us.

The transplant gym is reserved for patients actively awaiting transplant or up to three months post-transplant. The schedule can be difficult to arrange, because of the need to separate individuals with Cystic Fibrosis with burkholderia cepacia (and other dangerous and infectious bacteria). We have been given permission to return to the transplant gym (even though James is not on the transplant list). We are so grateful for the help of the physiotherapist in advocating for us, and for the kindness of the transplant gym in accommodating our needs.

James and I seem to grow stronger together in crisis (rather than apart). James tells me, “I love you more and more each day.” I do not hesitate to share the sentiment. The feeling is mutual. We do have our moments of tension, but James and I are able to attribute these to high dose steroids (on his part) and lack of sleep (on my part). We are forgiving of each other’s imperfections, and continue to hold each other closer at night. We are all too aware of the fragility of life. We cannot afford to take a single moment for granted. We have to focus on the love between us, and the joy and happiness that we bring to each other’s lives.

James here, posting from the hospital.

Another hard night of thymo treatment has passed in the hospital. I had chills and needed to be triple blanketed, and was up most of the night with nurses going back and forth bothering me or my roommate.  They probably checked my temperature and blood pressure 20 times as I drifted in and out of a fog.

I got myself up early with a splitting headache and wasted the next few hours watching silly youtubes.  I made tea in a styrofoam cup in the ward kitchen (aka the 'nourishment room') and took my mountain of pills.  Adena came by early, as always, and we've been hanging out and snuggling ever since.  We saw my lung doctor who says I only have one treatment left of 25mg (half a dose) so perhaps I will be able to go home tomorrow!

It'll be two weeks since we arrived in Toronto, and I've spent almost every day in the hospital.  Adena has been managing almost everything for us and I really hope to pick up some slack while I recover!  I have been failing in my husbandly duties and want to make it up to her with lots of good food and fun times.

Soon we will have some pseudo-furniture and kitchen utensils and I will be able to cook for us.  We'll be able to settle in to our bare apartment and get internet and start enjoying our lives again!

long nights

James had an overnight pass last night. It was a well-needed reprieve from the hospital (and the hospital is among the worse places to be with a non-functioning immune system). We have no structure or routine (or space of our own), but there is something to be said for the freedom to move at your own pace.

Tonight, I had to leave him in the hospital again. It is the hardest in the evening. I feel his absence the strongest. We will both have long nights. James will be awoken each hour to have his vital signs taken. His IV medications will be complete in the middle of the night. He will wake to the beeping of a machine, search for the call bell in the dark, and wait for a nurse to disconnect him. There will be continuous movement in the hallways and bright lights at all hours. James will listen to his body. He will be able to fall back asleep with ease after each disturbance.

I will have the company of Ophelia by my feet, but I will still feel the loneliness of a dark and empty apartment. She will remain close with each and every change of position and will not stray with my diminishing hopes of sleep. Insomnia has a tendency to feed into cycles of further insomnia. I will get into bed with the fear that I will be awake to hear the evening traffic slow to silence, and still be wide eyed with the rise of the sun. The bright lights will eventually seep in through the curtains, and I will welcome the streetcars and sirens as a signal to the end of this nighttime torment. I will start another day with forever darkening circles under my eyes. I know that I will eventually fall asleep. How long can I go without rest? Perhaps, I will sleep tonight. Regards, I will try (and Ophelia is already warming the bed).

Wednesday, September 12, 2012

comfort in discomfort

I wish there was more to write about. My dearest, Jamie, is lying beside me and closing his eyes in hope that sleep will bring relief from dystonia and malaise of thymoglobulin treatment. He had a treatment break yesterday to allow his low white cell counts to recover to some extent, and is finally nearing the end of his treatments. There is a fine balance with immunosuppressants between the benefits of preventing James' body from detecting his donor lungs as foreign, and the risks of developing serious infections. 

As always, James pushes through with strength and determination. He seems to accept a certain level of discomfort as a reality of living with disease. Although James rarely complains, he often expects and craves video games and McDonalds in exchange for his courage. This is a conditioned response from childhood. These were the rewards for needles and pills, invasive procedures, and long days in the hospital. These days, I am able to offer comfort with my presence, but I will admit, James was thrilled that I brought him McDonalds as a "treat" after nearly two weeks in the hospital. I also bought him a discounted t-shirt that is reminiscent of his favourite arcade game. (The behaviourist in me enjoys this testimony to behaviour modification and the power of positive associations). It was the best of both worlds, and in reality, based on a need, rather than a desire or impulse. James' weight has become a concern again (his wedding band is falling from his finger), and his few packed t-shirts in Toronto are all worn from lying in hospital beds and going to the gym.

There is some good news, but I am finding it hard to feel excitement or pride. I have been accepted into a prestigious graduate school program for January 2013. I will have to defer my admission, because of James' declining health status. That disappointment seems to negate the positive feelings. I wish I had more resilience against a seemingly negative cognitive bias. I wish it was easier to give myself permission to feel good. 

That is all for now. I may write more again tonight upon returning home. (I am having a really hard time with font size. It is really inconsistent. I will make an attempt to figure it out at some point in the not so distant future).

Tuesday, September 11, 2012

gratitude and finding strength

[As with the previous entry, I wrote this in the evening, but I was unable to post, because I only have internet access at the hospital].

It seems as though I may be establishing a routine that actually involves writing on a regular basis. (It also seems to be that lack of internet access could be a great source of motivation to write). I love to write, and I wrote in journals throughout my adolescence, but I would eventually become too critical or judgmental of my writing abilities to continue for any length of time. (Perfectionism was a great barrier to many of my pursuits). My online blogs have almost always been private to protect the personal nature of my ramblings, but I am starting to understand the strength and support that can build within online communities.

James and I launched a fundraising website a few days ago. We are so deeply touched and overwhelmed by the incredible generosity of friends, family, and anonymous donors. It is impossible to even begin to articulate our gratitude. It is reminiscent of writing James’ donor letter to the family of his organ donor. There were not enough words. There are not enough words.

I was weary of asking for help with the knowledge that so many of us are already struggling with student debt, month-to-month daily living expenses, and so forth. We are so grateful for access to universal health care in Canada. We know that our struggles pale in comparison to a large percentage of the population. We want to be able to give back. We will find a way to give back.

We are also very grateful for support and encouragement during these extended hospital stays that easily lend themselves to disappointment and frustration. James and I feel very displaced in our own lives. We lack a certain sense of control over our lives. There are a lot of uncertainties. We move through our days from one moment to the next with the knowledge that we cannot take our time together for granted. There are days that it is harder to laugh (and easier to cry), but James and I always find comfort and security in each other. We both agree: We would do this over and over (and over) again as long as we had each other to hold. The strength of our relationship continues to build irrespective of the challenges that we face. This is a love that extends well beyond the depths of fear and sadness. We have been through this before. We can do it again.

As for a health status update, James was sleeping when I left the hospital tonight. He was comfortable and calm, but I was reluctant to leave. He had a dystonic reaction to his fourth dose of the anti-lymphocyte globulin (thymoglobulin), but it resolved with a short break from the treatment, followed by a dilution and slowed delivery rate. I left him with food for the evening, and stumbled down the hallway in my own state of exhaustion. It is hard to let go of his hand and return to this empty apartment. I eat dinner in silence, turn on my computer to write, and crawl into bed with the hopes of even a few hours of sleep. Ophelia doesn’t leave my side.

Here we are in the morning (with dark circles to compliment our eyes), cuddling up, and waiting for the doctor:

Monday, September 10, 2012

one day to the next

[this was written last night, after arriving home from the hospital, forcing myself to eat dinner, and making an earnest attempt at relaxation].

o, this exhaustion is unbelievable. It is the type of fatigue that is not resolved through sleep, but hopefully, slowly over time, through a conscious effort at self-care, I will be able to move through my days with the ability to complete sentences and step without stumbling.

tomorrow, I will focus on housing. we have made phone call after phone call after phone call. no vacancies and expenses beyond imaginable for individuals with disabilities (and that is not to mention those barriers to employment and income). we found an apartment close to the hospital that is beyond our budget, but reasonable for the downtown core, and will offer a short-term lease. we have been advised to wait on signing a lease, because all potential funding would be dependent on James' listing as a pre-transplant patient, but at the same time, we will not find anything in the downtown cores within our range that is not listed on the bed bug registry as a cockroach hotel. James will need to be officially listed for transplant to receive any financial supports. we are still in a period of complete uncertainties, but this may not be a decision that can we can linger on. we do not want to put it on hold for too long, and end up without any housing upon James' hospital discharge.

although James has not started the assessment process for transplant, we have been told repeatedly that he seems to be a good candidate. the fear is that James may actually not be sick enough to meet the requirements. this is absolutely impossible to comprehend with a lung function of 25%, significant difficulties breathing on exertion, and an almost daily decline in weight. unfortunately, or rather, fortunately, his body is not showing distress in other areas. James has worked incredibly hard in the last 15 months (and longer) to build a strong and healthy body that is now compensating for the rapid decrease in lung function. this may become a barrier to being listed, at least, for now. I'm afraid that we will have to wait for him to deteriorate further.

for now, James is on his third miserable thymoglobulin treatment with improvements in tolerance and more appropriate medications available to treat the side effects of destroying James' delicate immune system. (we requested these in advance of the first treatment, but of course, the order was never made, and James was made to shake and shiver in the middle of the night while waiting for a doctor on-call to order basic pain medication and anti-emetics).

there has been no change in James' lung function for the last week. this is positive in that it is not a decline, and could indicate a level of stability, but at the same time, it doesn't speak to the possible hope of increase from the anti-lymphocyte globulin. but, James has incredible strength, and continues to be willing to make any and all efforts towards possible recovery of lung function. he has the enduring hope of an eternal optimist. to say that his strength is admirable would be a complete understatement.

with shorter days, light is fading earlier, and it is time to focus on rest and restoration. I am going to take pleasure in reading for pleasure. this is not something I was able to do in the last seven years as an undergraduate. good night, and more updates to follow.

Sunday, September 9, 2012


love. love. love.

another return to blogging

I often return to blogging after months or years of absence with a comment of observation that I only tend to resort to writing as a method of coping when I am struggling - and I am struggling, but not with depression. This is not a depression. This is a profound and overwhelming grief, or rather, anticipatory grief, at the rapid deterioration of my husband's health (and the difficulty of finding hope in a desperate attempt to focus on living). I deeply resonate with Dr. Kay Redfield Jamison's distinction and description of the differences between the experiences of grief and depression in "Nothing Was The Same." I am at a loss of words for this incredible pain, but I know that it is different than the lure of depression.

I also have a need to document these moments. I need to know that this was real. I have a deep fear that I will look back at these few short years, and I will not have memories. I am afraid that these years will be lost in a lifetime. I am afraid that I will lose James (and with him, all the love and joy and happiness that defined our relationship and that I have known). 

My former blogs have been mostly private, but I have decided to import blogs relating to James' journey with Cystic Fibrosis and Transplant (and our journey together in the last few years). We have also launched a fundraising website. The brief details of James' decline and status are written in the "Updates" section. (We have also linked to a facebook page in hopes of taking advantage of the social media network). 

That's all for now. I will make an attempt to write more in the coming days. Here are some photos from the magical night that was our wedding (because we are still glowing from that evening, and it is important to draw on those moments of happiness and joy for strength and hope from within the darkness):