Wednesday, 26 March 2014

Things Left Unsaid

I want to preface this post by saying this is not an attempt to reignite my blog in any way - but I feel like I left some things unsaid and some rather large question marks about why I came to the decision to end it as I did the other day.
First, it began with one of my regular visits from the Palliative Response Team late last week, where I was informed that some of the comments I had made over the course of the past few months had made some nurses feel for their safety. While it was only ever my intention to draw attention to the amazing work they do and in particular the unfailing support they had provided to both myself and my family - I am also aware that many of the scenarios they face, particularly in the night time hours are dangerous and precarious to say the least - be it unwilling patients or family dynamics that are unpredictable and often make them feel at risk. While the overwhelming majority of nurses who have followed these pages have been effusive and warm in their support of the advocacy I have attempted on their behalf - this news shook me in a way I can not describe and to those nurses who had concerns I am eternally sorry.
Second, and since January- my symptoms have worsened to such a degree that my capacity to maintain the energy to lucidly keep up with this communication and even respond to some of my dearest friends has been compromised in such a way that I felt it difficult to carry on the way I had. My ups and downs have become more alarming - so much so that when my family doctor saw me two weeks ago she honestly believed I would not last to see her return.
Third, my quality of life has become narrower and narrower as many of the things I used to avid love of reading for example - I simply can not do anymore as I lack the basic concentration to keep up - my appetite and the capacity to ingest anything but an increasingly narrower list of foods has worsened - I barely leave the house anymore if at all...and overall I am no closer to knowing how long I will have to endure this than I was before.
As I have told my family and my doctor in all honesty - if there was a pill I could take to end this - I would...but legally in this country this is not an option for me. In short, I am tired and ready in all ways for this to come to an end - something that right now is not in my control. So as much as I appreciate your overwhelming comments, please know the days of communication will not be what they were in any way. And my only hope is that you wish me Godspeed that this does not continue indefinitely - but that I am allowed to go quickly and peacefully to the degree possible.

Friday, 21 March 2014

When it is Truly Time to Say It is Over

I realize I have hinted at this several times, but for reasons I really don't want to explain, this will be my final blog post. In many ways having this outlet has saved me through this past year - giving me a way to express what this path has been like - to express honestly how I came to this place - to make amends as best I could and to express my gratitude to everyone who has reached out to me through all of the ups and downs. Fortunately, months ago I actually wrote a final blog that my sister will post for me at the appropriate time. If I have been graphic at times - perhaps a little too revealing - it is only because when you have lived so many years living in denial - coming clean about my journey has been so very healing to me in ways I can't fully express. I beg you please not to to push privately or publicly how I came to this decision - as it is simply time to end this. My thanks again for the gift of your love and support and your indulgence in following along with me. With love...

Tuesday, 18 March 2014

Love Beyond All Measure

I truly don't believe you can fully appreciate what the people you love are capable of - the resilience of their spirit and capacity for love until you find yourself tested the way my family and loved ones have been challenged over the past year. I have watched them grow and  change in ways I couldn't have fully appreciated until facing my diagnosis and the subsequent deterioration of my body, my growing dependence over time as I have grown increasingly frail. I marvel at their love for me - their unending patience and generosity. As I face the growing knowledge that my reserves to fight are all but exhausted - the honest assessment yesterday from the lovely palliative doctor who has cared for me in the absence of my own family and palliative doctor - that there is a strong chance I may not have what it takes to heal from the infections that have developed from what are normally routine changes in medication delivery methods - in fact only the second patient in his career who has reacted the way I have. Thus my family and I face another new round of emotions - another shift in my medication regime - and a growing realization that the time ahead may not be as nebulousness or open ended as we have clung to in recent months. We are still absorbing this information and processing as best we can. And yet I woke up this morning with a sense of peace - secure that I am surrounded by all of the love and support I need to take on what is to come. My lovely nurse Beth from the Palliative Response team who made the trek to our house at around 11 pm last night and visits earlier in the day by two other precious members of the team only reinforce their primary mission - which is to bring me comfort in any way that manifests itself in the coming days. So I must repeat that even through the days of pain and waning spirits - in so many respects this year has been the best time in my life - a time of growth, self-awareness and love that I cannot fully put into words. In short, I am ready as I can be and I am not facing any of this alone - and for that I am truly and utterly blessed.

Monday, 17 March 2014

Need to Know Basis

Another day and the worst part of it is mercifully over after a wonderful visit from the Palliatve Care Response Team to address the daily aftermath from the surgical procedures Friday. Mercifully my mom was by my side squeezing my hand during the hardest part when the tears were flowing. I learned today there are only four cities in BC and Alberta that offer this kind of home based 24-7 service for palliative patients -  relying largely on fundraising to keep it going. To think this God-send could fail to be maintained for patients like me terrifies me - as the frailer I get the prospect of having to leave the house or be lodged in a hospital bed at huge expense seems simply illogical and wrong. I am entirely dependent on the care and counselling they bring compassionately each day during these rougher times and the consistency of the experience and wisdom they bring - not to mention the risk of being exposed to further infection, were this option not be available where I live.
Part of today's discussion centered on the reality of where I now sit, nurse Jill telling me honestly she sees a frailer version of me than her previous visits. The context was the fact that I gave up the monthly lab work - which in the hospice world is considered largely unnecessary as the chances of it legitimately inducing any shift in the treatment plan are slim to none - the focus being on finding the right blend of medication to keep me as comfortable as possible as my body goes through its natural shutting down.
But several months after the latest lab work was done and noted, there is still a big part of me that craves those numbers - wants to know where they stand now even if it changes nothing. I realize beyond curiousity - it is about affirming what I feel physically and mentally to be true - and finding it reflected in that long list of numbers. But in other ways I acknowledge it is a fool's errand - that it won't answer the question that continues to hang over my head over just how close I am to the end and could cause more anxiety than comfort. That it is more about the life force battling with what is occurring naturally - and knowing in choosing to address these infections, for example, was a deliberate intervention/interruption in what would have inevitably expedited the move toward death. So this dichotomy was and is important to acknowdge where no other map exists of where this will go from here. I continue to learn and challenge my thinking as this journey goes along and develop an ever deeper love and appreciation for the love and kindness of my family who shower me with the richness of their presence.

Sunday, 16 March 2014

When The Sun Just Won't Shine

I apologize right off the bat for what I am about to share. It's just that sometimes knowing what I have written as this journey gets rockier, has had the effect of upsetting people who love me - an unavoidable consequence I suppose but difficult for me to contemplate nonetheless. It has the effect of being tempted to censor myself a bit but I feel to be true to the process - I just have to come clean that today has been tough...very tough. In fact it has been a day of some tears and feeling well and truly sorry for myself.  I think I truly underestimated the pain and general after-effects of having my infected port sites surgically drained. The process to tend to them each day is very painful and I generally feel very unwell and wasted since the procedure happened on Friday afternoon. I have tried so hard to focus on the good - to separate the feelings of my declining body with my emotional state and need to express gratitude as time marches forward. But sometimes I just can't do it...can't help but feel the pain on all levels and get it out because it is just necessary. I want so dearly not to be described as brave...because I am just a human being living through an experience over which I have no control - and what has transpired has been the result of my own choices and lack of strength. So I suppose I just felt like sharing that I can't say with confidence tomorrow will be a better day...I dearly hope it will be but it might not be and that is just something one has to accept on this path. No day brings certainty...a routine that feels anything like normal and rising to the occasion is a hope-but not a given.

Saturday, 15 March 2014

Advanced Care Plans and Reading the Fine Print

Postcript to my previous post...So relatively early on in my journey and together with my lovely family doctor Leah Norgrove we put together an advanced care plan. I remember at the time her warning me to be careful about how prescriptive I might be tempted to be in what is a legally binding document - about what I did and did not want to prolong life at the end. I realized with a vengeance yesterday how prophetic that was. Something as simple as a wound going septic or a urine infection (easily treated) could actually end my life sooner rather than later. While I was clear about a DNR order - we discussed at the time that something easy to take care of if it was in the system's power to do so and would help provide comfort - which this whole approach has been predicated on - should not be ruled out entirely and that we would deal with these issues as they arose. So yesterday was one of those watershed moments and I didn't hesitate to say yes let's deal with it - sooner rather than later. Would seem wrong after all of this to let something so trivial in the scheme of things lead to my demise. Not that I am bargaining for more time - and am as prepared as I could possibly be for what will come naturally - but nor am I ready to completely relent to the smaller things that may ease the pain along the road. (And a huge thanks to the ever amazing Palliative Response Team and in particular nurse Sandra for responding so quickly today to begin the painful task of tending to my wounds - efficiently and so kindly...the first of daily visits to address this latest hurdle.)

Friday, 14 March 2014

When Intervention is Welcome in my Palliative Journey

Warning again of some more graphical medical content, so feel free to take a pass.
I have come to believe there is something uniquely precious about the men and women who gravitate toward the field of palliative medicine. Case in point was a home visit I received this morning from the amazing Dr. Ryan from the Victoria Hospice program who I had never met before - and a kindly palliative resident who tagged along to observe our session before he moves on to Calgary shortly for a permanent position. Dr Ryan spent almost an hour thoroughly and gently understanding my medical history and admitting his unfamiliarity with eating disorder patients - something that is all too familiar among the health care professionals I have encountered over the years. I say that not in a judgemental way - but even talking about the cohort of patients - men and women like me who are not teenagers but who have dealt with these illnesses for decades was instructive to both the physician and the resident. So in addition to a thorough and illuminating conversation about where I am and the bumps along the road - I felt entirely comfortable to share with these virtual strangers some of the most intimate details of this journey and the particular bumps in the road that I have experienced since January. But the most significant interchange was their assessment of two large and painful abscess areas on my chest where plastic butterfly ports used to administer medication had failed and had to be removed - were growing larger and failing to drain after almost a week. The prospect of the infection going septic was of sufficient concern that after we said our good-byes, the doctor immediately made contact with a general surgeon who agreed to meet me despite the madness spring break brings with it as staff enjoy time with their families. I was off to the hospital emergency room where a kindly general surgeon was able to thoroughly drain them and pack them with an antiseptic material before bandaging them up. Overall, and despite the hordes of walking wounded in the waiting room - I was in and out in a record two hours. Now I will be relying on the daily support of the palliative nurses to deal with the follow-up wound care for a number of days. I came home nauseous and in pain as the freezing dissipated...but a nap helped immensely and I am ready for a new little chapter. I underestimated how the prospect of them turning septic in my blood stream could actually shorten my life span - which despite my insistence on limited interventions - is something I couldn't justify in this time. So another adventure in health care land and my profound thanks to the remarkable physicians who took the time to treat a palliative patient with dignity, respect and a minimum of fuss. Again these physical trials come with the natural decline of my kidneys and are to be expected. But every part of this is accompanied by the support and love from my family - my sister who dropped everything to held my hand through the whole ER visit - my parents who dropped in to give their love and hugs and Kirk fussing around fixing tea, doing laundry and all of the household chores that happen without me right now. So again and despite the physical, I am grateful for this day...for the love and light and caring I have been fortunate enough to receive.

Thursday, 13 March 2014

The Greatest Gifts

Feels like a time to focus on where I am - watching this failing body and assessing what I have learned. As I said to Kirk tonight that over these rocky times, as vanity and humility fall away...lies a deeper strength and resilience than I would have ever imagined. Something as close to self- acceptance as I have ever felt - and like the Grinch - a heart that grows bigger and bigger - and in turns invites more love back than I have ever hoped or dreamed I could experience so fully. This year of ups and downs, precious connections and shared moments with a community of people - old friends and new - that I would never have imagined. And it is the depth and sincerity of these interactions that overwhelm me - help me withstand the painful moments and give me the power to adapt as my body new thresholds of need come and go. And then there is amazing transformation with my family - learning new ways to communicate and watching them literally drop everything to be there for me - to jump in without the need to ask and get me what I need when I am incapable of reaching out on my own. Seeing the dynamic of love and support grow ever deeper with Kirk as if his own confidence level has risen by leaps and bounds as he adapts to our new reality - stepping up in ways I likely made it very difficult to do in the past with my controlling nature. This journey has changed all of us - in so many powerful ways - breaking old patterns and finding new levels of acceptance and love. So experiencing all of this - the support of my care providers - could not have been a greater gift...and truly has brought me to a place where the fear and trepidation about where this is taking me dissipates more each day. I feel ready in a way I haven't felt to date - entirely attributable to the exchanges of love and care that I experience every day from so many lovely people who have crossed my path. Nothing is the same and I truly wouldn't have it any other way.

Wednesday, 12 March 2014

When You Feel Like More Than A Patient

You will indulge me for spending an inordinate amount of time heaping praise on the health care system - and more importantly the precious souls that I have been exposed to since this journey began almost one year ago. It is our nature not to speak out about the good which is why I spent the bulk of my career in health care defending the system when things went awry between patients, family members, advocacy groups and care providers. So much rooted in internal dynamics in families that tainted the provision of care...each situation so linked to moments when people did not felt heard. I have always had intense compassion for those patients - but I have learned a lot about the perspective of those providing care in recent months - more directly than I ever had the opportunity in the past.
So it is a testament to the bond that has been forged between me and my merry team of care providers that some special moments happened today. First, a call from beautiful Fiona from my family doctors office to check in on how I was doing and to let us know she'd heard from my doctor who is out of commission for a few weeks. My sweet, amazing Dr. Leah Norgrove had me on her mind - as she is constantly on mine. This unexpectedly lovely exchange - yet another reminder that despite my failing body I am so deeply connected and indebted to the special souls who have been there for me in these last tumultuous weeks. Then came a surprise visit from my regular home care nurse Joan Doerkson who just wanted to check in, even though I am temporarily under the care of the broader Palliative Response Team. Seeing her lovely face ...sitting in the sunshine with her hand on my back - brought its own sense of healing. Then around the same time the joyful nurse Carol and counsellor Arnie from the PRT team came to follow up on some unfinished business from yesterday - both a pleasure to be around. One can not help but to be bowled over by these special people who have come into our lives and our home - by something deeper than their amazing skills and experience but by the love they bring each and every day to the hundreds of patients who depend on them and the relief of knowing they can pick up the phone and the kindly cavalry will be at the door - armed like Mary Poppins with a bag of treats and delights - to bring you back to a new definition of comfort. I am blessed and in awe at what I continue to receive - even as my body continues its steady and necessary decline. I am simply and gratefully drowning in love.

Tuesday, 11 March 2014

Lessons in Humility

Please note this contains more graphic personal details and I would encourage you not to read on if not comfortable. There is nothing dignified about this part. Due to repeated unsuccessful efforts to reintroduce ports imbedded in my skin to help deliver my medication we moved on to plan "b" which is an external pump connected by tubing in my leg that steadily deposits a new medication that makes me even more sleepy than before. It weighs about a pound and is awkward to carry around...but necessary at this moment. The down side is just how groggy it makes me feel - how slow my reactions have become. Case in point - early the other morning when I had to go to the bathroom and by the time this message was received in my brain it was almost too late. Hence, like a three year old, there was an accident - something that is on the list of what to expect in the final stages - but beyond humiliating. Again my sister was right there to come to the gently do what she needed to do to soothe my tears, fix the bedding and me. These are not stories one wants to share and yet it is part of this territory that is unavoidable at this point. There have been more and more visits from the unique swat team know as the Palliative Response Team who respond to more short term crises. They are all equally amazing, many beautiful nurses and counsellors who offer myself and my family treatment and the most compassionate care in equal measure. I have no more words to describe the power of how they heal me with their presence.
On the down side, due to the many unsuccessful efforts to find tissue on my limbs strong enough to withstand butterfly ports through which to administer some of the other medications I have developed a number of abscesses that are failing to heal. Antibiotics have become unavoidable now and the prospect of a move to a hospice bed where the meds can be delivered intravenously drawing closer. I am ready in many ways...the stairs in our multi-level townhome becoming more burdensome and the toll on my family who are caring for me night and day - clearly not sustainable. So not the best of times but how grateful can one be for the angels who surround me - who would do anything at any time to spare me distress. There is no degree of thanks that seems adequate and whatever burdens I face - I know they pale in comparison to so many - that I am rich with the love and care that surrounds me - and that is really all one needs to know.

Saturday, 8 March 2014

The Moments of Lucidity...

This fog-land I live in now is not conducive to lucid thought. My state of constant sedation means more sleep than times when I am awake - starting out groggy and discombobulated without a clear sense of time, place or sensation. I stumble around trying to find my bearings - sometimes enough to go to the bathroom before crawling back to bed. Other times I do get up - try to find a normal routine.When I write, thoughts are not so clear - mixed up, watching my family hover around me waiting for the elusive four hours when the injections start again. Which leads me to social media where I have been ever-present and where I increasingly lack the energy to engage to the degree I normally would. I know my community will understand this as best they can - that the objective - at all costs - is to avoid the debilitating anxiety attacks that have overtaken me in recent days. So there is an upside to what has frequently felt less pleasant. But was has been most jarring was a follow-up  call from my amazing family/palliative doctor Leah Norgrove following a home visit the other night. Due to some previous commitments she will not be available in the next couple of weeks. She talked to my sister...but the gist was an apology for not being here for me and almost what sounded like goodbye - along with some heartfelt comments about the closeness we have forged over all of these years and the very real prospect in her mind that I may not be here when she returns. This is not something one can take lightly...that one can compartmentalize or diminish. I suppose I am still in the process of absorbing it really. I have been here before but this does feel different...somehow less nebulousness than what has been speculated in the past. So this journey family around me to keep my meds on track day and night. They can't do enough for me...catching me when I am wobbly...lifting me off of furniture when I need help....humbling and yes even a bit much sometimes for someone so fiercely independent - but all of this is necessary now and I am beyond grateful..beyond words that I am not dealing with this alone

Thursday, 6 March 2014

To Sleep, Perchance to Dream

There is a time in a journey when relenting is the only logical option. This may help explain why through to the early hours of the evening to late at night , my amazing home nurse Joan, my family doctor Leah, and a member of the palliative care response team - lovely Bernice - worked through my latest crisis - a 13 hour anxiety/panic attack that began at three in the morning and no amount of medication would make go away. It is clear that the sicker I get, the faster what seems to be a workable medication regime begins to fail leading to more of these scary days. So the latest decisions are more drastic - aggressive - with the goal being to prevent those bad physical and emotional symptoms from creeping back in. So we have moved into full-on sedation - every four hours - day and night - two drugs injected collectively by shifts of my family members, who are sacrificing sleep and their own lives to be there for me. I have had to accept that threshold of what any drug can do can change on a dime - and that waiting for the next option to appear can take time. So now, my musings around sedation have been exceeded - I am groggy, slurring my words...falling from time to time when I get careless with my movements - but adjusting...still feel grateful that yesterday is but a bad dream and I can face tomorrow without fear - shrouded in the knowledge that I have a dream team around me to make this way forward easier.

Saturday, 1 March 2014

Mrs. In-Between

It is a home day today - the kind of day when leaving the house is unimaginable. Woke up feeling fragile - getting coffee had to involve sitting down with my head in my hands several times to try and propel myself forward - willing myself not to fall down. Some days just go like this - on the whole better than the bad, awful days of anxiety and panic when nothings seems to calm me. But the feeling of being half present takes some getting used, but not here - awake but not entirely present - struggling to find words sometimes - to identify what I want. Feels like going through a long tunnel where the anticipation to break free into the light grows stronger the longer the ride goes on - where any kind of stimulation - light, noise, physical proximity feels suffocating and overwhelming. Doing as well as I can under the circumstances - as well as anyone would when your days are numbered but no one can reveal what those numbers are - how close or far away. Levels of engagement and activity narrowing the longer this goes on - naturally culling where the ever more limited energy is directed. I wonder on these days where is the elusive silver lining - the promise that things will shift again making a day like today seem like a memory I might think of nostalgically at some future time as the "good times". It is all about perspective - the lens you choose to look through - the photographic filters to make the lines less sharp - changing the current view to something more palatable. Sepia tones to dull things - to better reflect this place I am in.