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.

youtube video

Please share (and ask your friends to share): James' Quest for Lungs (on Youtube)

love love love

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.

exercise

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).

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).

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:
 

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.

love

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):

acute rejection

It is early, but I'm awake to stare at this blinding screen, because I didn't sleep well. In other words, I could no longer stare at the ceiling (and prevent my mind was wandering). so, I made a cup of coffee, poured a simple breakfast of cereal and goat's milk, and decided to type a few lines before heading to work. 

(sidebar: I really should write about work more often. I am working with some very interesting children. It can be very challenging, but I am learning a lot from these experiences).

It seems that it is only during difficult times that I find myself with a need to write. My pile of adolescent journals should speak to that (and dark poetry written on scrap paper strewn throughout). 

The truth is that James and I are in pre-marital bliss. We are both glowing with joy at thoughts of sharing our lives together. We talk about the future with optimism and hope. We will be grandparents together. We will hike the West Coast Trail. We try to believe that survival is all about attitude. We tell ourselves that James will be the exception. 

The problem? We are not immune (pun-intended) to the realities of Cystic Fibrosis and post-transplant complications. James has had an exceptional year with (relatively) minor difficulties, and the most incredible gains in all areas of his life. We live our lives with gratitude for each and every day, but that doesn't change our resolve: James will not be a statistic. 

We weren't prepared to hear those words on the answering machine: James has rejection. It is acute rejection. It is only level one. (What does that mean?). It often is not treated, because it resolves on its own.

We don't know a lot more. The rejection showed up at his 1 year post-transplant bronchoscopy. We were not informed. It wasn't a concern. Then, James' spirometer readings started to decline steadily. It started with a 5% drop at his recent pulmonary function test (PFT). This progressed to several mornings with a 10% decrease in lung function. Yesterday, James had a 30% decrease. He went to get batteries in hopes that it was a malfunction of the machine. It wasn't. 

We called the transplant team and waited. I was scared, but I was (and am) trying not to panic. Acute rejection is treatable. It was caught early. Toronto is the best place to be. I am telling myself this over and over again. The doctors do not seem to be concerned. That must be a good sign.

The message systems allows for communication with the transplant team. We leave messages. We receive messages. We don't get to talk. We have to trust the team.

The wait for the phone to ring was reminiscent of James' 9 months with that pre-transplant pager. I remember the anxiety. I remember the uncertainty. Would the call come in time? It didn't matter the length of the wait. It always feels too long. It always feels urgent. The difference? We were waiting for good news. James would be getting his lungs. Now? We are waiting for information and a plan.

We are still waiting. The doctor was unavailable yesterday. James needs to go for more tests, but it is not safe for him to be at the hospital. Fridays are clinic days for individuals with burkholderia cepacia. It is a scary bug. It is highly communicable. It can have devastating (and often life-threatening) consequences. 

We might need to wait for Monday. We are good at waiting. James waited 10 months to qualify for transplant. We waited 9 months together with a pager on his belt. We were done waiting post-transplant. James was ready to live. We were ready to live together.

We know that we can get through anything together. Our first year together was a testament to that fact. We will do our best to enjoy the weekend, and stay distracted. We are so grateful to be able to participate in CF Canada's Great Strides on Sunday. We both met our fundraising goals. It will be great to give back to the community.

That is all for now. I have to go to work, find distraction, and focus on the positive.