tag:blogger.com,1999:blog-18215017716871134702024-03-26T02:03:54.919-07:00Bess, I am a Blogger NowRandom Thoughts and Other StuffAnonymoushttp://www.blogger.com/profile/17485321275748504745noreply@blogger.comBlogger256125tag:blogger.com,1999:blog-1821501771687113470.post-26624220057783456552014-05-15T23:06:00.002-07:002014-05-16T22:43:38.666-07:00This is the Sound Of One Voice - The Final Verse<br />
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<span style="font-family: Trebuchet MS, sans-serif;"><br /><i> Those of you who have been reading this blog for the past several months will know that the wonderful and talented woman who composed it - my sister, Michelle - was in the end stage of renal failure after living most of her life with a dual eating disorder. You will also know that Michelle eventually stopped posting for a few different reasons - primarily because she no longer possessed the energy to write. But she had one post, composed five months ago, which she had reserved as her last, and which she asked me to publish for her when her journey finally ended.<br /><br /> Michelle - my beautiful, intelligent, funny, generous, loving "little" sister - died yesterday. Her passing was peaceful. She simply took a last breath, and then did not take another. Her last few days were calm, happy. She told Kirk, her beloved partner, that she was "happy every day" and that she had "so much to be grateful for" - the view outside her window, the loving people she had around her, her two "wee white pups" (Samuel and Daisy), the beautiful messages from family, friends and colleagues who sent so much love to her... She repeated those same sentiments to our mom and to me; she felt loved and cared for, and all was good in her world.</i></span><br />
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<span style="font-family: Trebuchet MS, sans-serif;"><i>We are grateful that her final days were so free of the pain she carried with her through most of her life. She was an extraordinary person, with many, many gifts that, most of the time, she could not see in herself. But we saw them, and we are richer for having had her in our lives.<br /><br /> So - this is the sound of one voice - my sister, Michelle - sharing her last words with the world. I miss you so very much already, my wee one. I'll love you forever, my darling girl. xo</i><br /> <br /><br /><br /><span style="color: blue;"><br /><br /> I don't know when or if this will be read - but I know someone else's hand will post this - hit the button that says "publish" and let it go. It will mean that this part of the journey - my journey - has come to an end. The powerful Indigenous writer Thomas King wrote "the truth about stories is that's all we are". This blog - my stories, my presence here - mattered to me in a way that is hard to express. I wanted more than anything to tell the truth - an experiment with no particular agenda or deeper meaning. And yet what I discovered was that it was possible to share the parts of yourself you have hidden from the world - even from yourself - and that transformative things could happen. People began to open up to me in a way I never dreamed possible. Far from letting me go - they just held on tighter. <br /><br />I learned you could walk away from everything that defined you and discover something deeper - when whatever trapping of the working world is gone. That the downward journey - letting go of many of the things one surrounds oneself with to fill the empty spaces - brought its own freedom. That the moments that matter are the connection of people's stories and souls and other broken pieces that I have stumbled across - bringing their own healing power. It was worth the pain.<br /><br />To my Mom and Dad - my sister Karen (David...my sweet Liam...my angel Andrew) how can I possibly express to you what you mean to me - how much I will miss wrapping my arms around you? Know I will always be with you. Always with love. To my baby brother Murray - my precious angel - I love you our forever wee boy. To Aaron, Shannon, Aanji and Binaawke - for every joyful moment and the gift of you - my gratitude and endless love. For the privilege of being called "Nana" - which filled me with delight. To Miranda, Nathan and the new little soul joining your family - my thanks for the love - the light - the happiness you brought me. And to the baby I may never hold - you have shone brightly in my heart. May your life be a gift of abundance and joy. To those related to me in the family way, friends, colleagues and acquaintances who lightened my path and enriched me with your presence - may you be surrounded always with peace and love. And finally to Kirk. Tirkie. There are no words to describe what I might have missed had fate not brought us here. The gifts of your family, your kindness, your incredible heart. More than anything I wish you a full life - free of pain - surrounded by everyone who loves you (and they are legion) and in the beautiful words of Christine McVie..."For you, there'll be no more crying...for you, the sun will be shining...".<br /><br />In the end, this has been the sound of one voice - one voice that may echo in your mind telling you I love you...I love you...I love you...</span></span>Anonymoushttp://www.blogger.com/profile/17485321275748504745noreply@blogger.com6tag:blogger.com,1999:blog-1821501771687113470.post-31145907284067306122014-04-16T22:53:00.000-07:002014-04-16T22:55:32.616-07:00The Valiant Battle of Gloria TaylorLast night - and with some trepidation, I watched a documentary profiling Gloria Taylor - the brave BC woman with A.L.S. who took her battle for the right for a dignified death assisted by a physician to the courts. Sadly she passed away before the case ultimately made it to the Supreme Court - in a hospital, not in her home as she had hoped. It was painful to watch - not only for the indignities she suffered, but for the interviews with her family members who painfully watched her waste away and so eloquently shared many of their last moments with her. Being forced to ask for help to get off the toilet in a hotel bathroom when a friend was unable to assist her- gradually unable to receive the relief from a pain clinic as her muscle mass wasted away. It felt all too close to home and yet I couldn't look away. She lived a year longer than the doctors had predicted and it just reminded me of how excruciating it is to me not to know how much longer this will go on. More transitions happen to me - the itchiness that is a byproduct of the renal disease has returned in the last week with a vengeance. I sleep more and more each day - sometimes up to seven hours in total through the morning and afternoon. I feel weaker and yet I fight every day to do the simplest things without help - showering, making a cup of tea. Eventually I know I won't be able to keep this up without more constant baby-sitting from my family members - but knowing when to ask for that help is so hard for me to figure out and my seemingly insatiable desire to get through this myself becomes more and more unrealistic. And as confident and prepared I have felt about all of the preparations necessary for the end for so long now, not knowing what to expect next seems the most bitter pill to swallow. And I find fear setting in, in a way it hasn't before about the ultimate transition that I know is coming. I wish I had the belief that so many people cling to about what happens when that moment comes - but I simply don't have a clue about what to expect - I seem to lack the capacity to take comfort in what many people envision about the end of life - that is just not where I am and I don't see that changing. And yet a part of me prays for a painless end - going quietly in my sleep with a minimum of fuss or helplessness - anything to spare my loved ones more pain than they have already experienced. I should be grateful for these days and yet I feel nothing but resentment now - and knowing that the court's effort continue to drag on, it just seems so patently unfair that we can't make decisions without the aid of professional help - that the options that exist are risky and for the most part, unrealistic. I desperately hope that the courts will do the right thing and recognize the suffering that is going on daily for thousands of Canadians who are the subject of valiant efforts by the health care system to keep them going, regardless of how miserable their quality of life. Serenity just doesn't seem like too much to ask for, does it?Anonymoushttp://www.blogger.com/profile/17485321275748504745noreply@blogger.com5tag:blogger.com,1999:blog-1821501771687113470.post-14725928250123493702014-04-11T16:59:00.000-07:002014-04-11T16:59:42.153-07:00Adventures in the Outside WorldYesterday was one of the first days I have left the house in about a month. The occasion was that my sister took me to get my hair cut. Actually leaving the house is an ordeal now that seems impossible to imagine considering my life before. What I can't get used to is the weakness that goes along with this - being helped in and out of my sister's car - feeling like an invalid. But the worst moment - when we finally made it into the salon was when I tried to get out of the chair to get to the sink and stumbled, narrowly missing knocking everything off my stylist's station and correcting myself just before I fell to the floor. It may sound like a minor incident, but it felt entirely humiliating at the time. It is the part of this that I find hardest to accept - the notion of simple things I took for granted slowly becoming harder to accomplish - and feeling like my memory and my thoughts are becoming so jumbled that I can't express what I want or need to say at any given time. This was not the only humiliating moment of my day but I will spare you the details. Suffice it to say this is all part of the territory - and no matter how resilient I have been - these are moments that go along with this ride that one has no other option but to accept - no matter how much I want to block them out. My family is sympathetic - feel bad on my behalf - but no amount of their efforts to soothe me can take it away entirely. So today the sun is shining and I am staying put - trying my best to put it behind me - one day at a time and all that - no place to be except where I am.Anonymoushttp://www.blogger.com/profile/17485321275748504745noreply@blogger.com2tag:blogger.com,1999:blog-1821501771687113470.post-43557648341394960962014-04-09T12:31:00.000-07:002014-04-09T12:31:57.177-07:00What is Not So Easy to Block OutA month ago yesterday was one of the darkest days I have experienced since this whole odyssey began. But what I only recently learned about that day - things over which I have no recollection have recently come to light - unsettling things that made me realize how serious this has become. It was a day that I was a total mess - so unsettled that I spent over 12 hours wandering through the house - unable to sit, lie down- or find any place that was comfortable until my sister eventually had to hold on to me as I grew weaker while I wandered - endless circles around our living room. Eventually it involved a nurse coming to the house and even a visit around 6pm that night from my family doctor. What I didn't know or recall is that one point she pulled my sister aside and suggested she contact my family in case there was anything they wanted to say to me before I was eventually sedated. What I didn't remember is that everyone in my family came that night...my Mom and Dad drove in from Duncan, my nephews and my sister and brother-in-law David...that I actually spoke to them - again, moments I don't remember - before I was finally settled for the night. It is hard for me to think of these events and how so seemingly close to the end things seemed at the time - and yet still I am here - somehow going through these experiences and unfortunately taking my family with me. Perhaps it is why now I find myself on some levels pushing them away to some degree - discouraging visits - managing phone calls but perhaps in some ways thinking that while I thought initially I wanted desperately not to be alone near the end - maybe I am in a different space now. Things turned again since that time - I haven't had a significant repeat of that day since - but it sticks with me, haunting me in a way that these things could have happened and yet I blocked them out so completely from my mind. It is all so unpredictable where I will be at any given moment and why the whole notion of focusing on the here and now seems the only way to live through this. Again, I simply don't know how long I can or will continue to live this way and so each day I wait - wait for something which seems impossible to envision.Anonymoushttp://www.blogger.com/profile/17485321275748504745noreply@blogger.com2tag:blogger.com,1999:blog-1821501771687113470.post-79989607388210031252014-04-07T12:08:00.000-07:002014-04-07T20:31:56.347-07:00The Here and NowSomeone very wise reminded me yesterday of the importance of focusing on the here and now - not ever a strong suit of mine. My tendency and I suppose my "go-to" place has been projecting into the future to scenarios over which I have no control - or picking at things from my past that can never be taken away. I suppose in many ways it is because for some weeks now I have been feeling that there isn't a lot about where I am that I am anxious to embrace or even accept. I am simply not there right now - but I also know that there really is no alternative but to find some kind of acceptance for where I am - because fighting it has been clearly less than effective. I'm not exactly feeling enlightened about how I might accomplish that - I do try to focus on the things I am so grateful for - the ways in which so many suffer in ways I cannot even imagine. So for now all I can do is to try...a tall order....but one that I am trying hard to accept. (For the record - the words of wisdom came from the lovely Lisa Tees - a true kindred spirit and one who brings me great comfort!)Anonymoushttp://www.blogger.com/profile/17485321275748504745noreply@blogger.com1tag:blogger.com,1999:blog-1821501771687113470.post-6924146192005791952014-04-05T15:14:00.000-07:002014-04-05T15:48:07.415-07:00PurgatoryAs I mentioned before, I grew up in the Catholic faith because like most kids you do what your parents do...without question or really understanding what the church really stands for. But other than the take-aways of fear and incredible guilt - I did learn about the concept of purgatory - that alleged limbo between heaven and hell - and if I had to really describe in a word where I am right now - purgatory seems as appropriate as anything. I am living a quarter of the life I lived before - primarily housebound and with very little that I feel capable of changing. Even my doctor remains perplexed by my body failing - then bouncing back to this state where my organs somehow hang on - and nothing terrifies me more than going on like this indefinitely. There is something almost akin to the boy crying wolf - where the word of my impending death is deeply felt by many who care for me - and so it is almost like embarrassment that things change so slowly. But as hard as this is to say, nothing gives me less comfort than when people interject their own religious beliefs in their effort to be consoling - when I believe these are deeply personal and the assumption that I share these beliefs could not be further from the truth. I do have my own belief system - which is entirely personal and that I have come to after many years - and while I respect people's faith - regardless of what that may be - I don't believe it is anyone' s right to assume it is welcome or comforting to me from where I sit now to impose those beliefs on me no matter how well- meaning they try to be. Again, I feel guilty for raising this - but I would urge people to think long and hard before sharing with me or any other palliative patient their own thoughts on the "after-life". I am not looking for conversion at this stage of my journey - and beliefs are not fact - just concepts that some people seem to find comforting - which is fine and admirable -but never assume that I or anyone else necessarily shares that point of view.Anonymoushttp://www.blogger.com/profile/17485321275748504745noreply@blogger.com2tag:blogger.com,1999:blog-1821501771687113470.post-69466967230454383362014-04-04T16:11:00.000-07:002014-04-04T16:11:44.090-07:00How are you?This is an unavoidable question for someone in a circumstance like mine - but in all honesty, not one that I feel enthusiastic about responding to. Things change - but not necessarily in a good way and I don't even know how to answer some days. It seems petty to not respect that people are doing this out of love or genuine concern - but as I have explained as I am more and more distant from people who were once a constant presence in my life - it feels weird to express what I am feeling at any given moment. I feel more and more like a guinea pig for changing regimes that start out promising sometimes - then leave me back where I started or worse. I guess I am tired - frustrated by my lack of independence that was always such a huge part of my life. The word "dependence" is the worst possible word that I can think about right now - as much as I push and push not to ask for help and feel so guilty when I have no alternative but to do so. I in no way expect people to stop asking - but just saying that sometimes it is harder than others to say where I really am - what I really need or want - when I can't even figure it out myself.Anonymoushttp://www.blogger.com/profile/17485321275748504745noreply@blogger.com1tag:blogger.com,1999:blog-1821501771687113470.post-79356096074120396412014-04-03T15:31:00.000-07:002014-04-03T15:31:37.284-07:00DreamsDespite the fact that I live with the reality of death - and no matter how much I have done to prepare for what my wishes are when the moment comes - as these days drag on I don't exactly spend every waking moment thinking things are going to just suddenly stop. For one thing, and after all the years of punishment - my heart still keeps going as my nurses have reiterated many times. But at night lately, something in my subconscious is obviously fixated on the prospect of leaving this mortal coil. I wouldn't exactly call them dreams - more like nightmares that seem to go on and on lately...so much so that I often dread when night-time is approaching. They follow pretty similar themes. For example - I hear people in our house, family and friends from far and near, having conversations together and I find myself trying to get to them - or calling out to them, but no one can hear me and I am unable to be part of what is going on. I guess in the night I can visualize what it will be like not to be here - not to be part of the life I once knew. I have had so many predictions of how long this could go on - and none of them have come to fruition. As I continue to be told I am one of less than a handful of patients who have this particular blend of issues - so everything is a guess and speculation - no matter how much parts of my body are shutting down and my energy fades more and more each day - I continue to worry about how this will go from here. I am sure anyone in my position would understand these questions - how the waiting can be excruciating in ways I can't convey - not just for me but for the people who love me. So after many weeks of being away from work, we have decided it is better that Kirk go back to work for now as there is nothing more that we can do but wait - and the reality is his presence here - or that of my family will not prevent whatever is to come. More than that, it is long overdue that he have some respite from this space and what I have left to offer at this point. It is the right thing to do and his co-workers have been miraculously understanding and generous for the time he has already taken. So things will change again...something that has been constant in this process and we are ready as we can be for things to go back to what they were - for however long this lasts. I still have the support of my family and care providers - so it is not exactly like I am completely alone. So while I am grateful for everything he has given - it is time for him to rejoin his own life - do the job he loves and be surrounded by the people and things that make him happy.Anonymoushttp://www.blogger.com/profile/17485321275748504745noreply@blogger.com1tag:blogger.com,1999:blog-1821501771687113470.post-35218032256500548272014-04-02T15:34:00.000-07:002014-04-02T16:29:29.001-07:00Second ThoughtsThey say it is a woman's prerogative to change her mind and so here I am. Nothing has really changed since my previous post in terms of the way I am doing and feeling - and I can't do this with any confidence that it will make any more sense than my previous posts.<br />
One ground rule I want to make clear is that in light of what led me to stop this in the first place - and as much as they are a significant part of my life now - I no longer feel safe talking about or advocating for my care team. I express my gratitude as effusively as I can when they are with me and that will have to be enough. I will however point out that the manager of the community home nursing program sent me a personal note some weeks ago - thanking me for my support for their efforts and the continued dedication and hard work of their staff.<br />
This blog has only ever been my voice...my thoughts - I never purported to speak on anyone else's behalf or to try to convince you that my way of seeing things or handling this to date has been appropriate or right for anyone else. But as my life and contact with the outside world gets smaller and smaller - losing this - my only outlet left - has been like losing a limb. Since I was a little girl, the only way I really knew how to get my feelings out was to write it down - and frankly as long as this keeps dragging on- I frankly need this for no one's else's sake but my own.<br />
Someone once wise once told me that people who have been fighters all their life find the end stages more difficult to accept, while those that have lived a more passive life find it easier to let go. I suppose the people who know me well know which category I fall into...thus perhaps it is not that surprising that I find it as difficult as I have to give in even though everything in my being is ready for this to stop.<br />
Also, I have spent a lot of time on the web site of the Right to Die Society of Canada - which makes it clear that it is the connections you have in this country have more to do with who really has the option to pursue their choice - and so it is clear in a covert way it is happening - and probably far more frequently than we realize. While it has links to a lot of information I have been told that without the help of a qualified professional, things can and have gone horribly wrong - and the prospect of doing something that would actually prolong this is more than I can bear. So for now I will write write when my energy permits me to do so...for me...not for anyone else -because frankly it feels like all I have.<br />
<br />Anonymoushttp://www.blogger.com/profile/17485321275748504745noreply@blogger.com0tag:blogger.com,1999:blog-1821501771687113470.post-47558780017753837212014-03-26T07:30:00.000-07:002014-03-26T09:21:28.940-07:00Things Left UnsaidI 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.<br />
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.<br />
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.<br />
Third, my quality of life has become narrower and narrower as many of the things I used to do....my 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.<br />
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.Anonymoushttp://www.blogger.com/profile/17485321275748504745noreply@blogger.com1tag:blogger.com,1999:blog-1821501771687113470.post-67334249213666646322014-03-21T06:54:00.000-07:002014-03-21T07:07:18.737-07:00When it is Truly Time to Say It is OverI 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...Anonymoushttp://www.blogger.com/profile/17485321275748504745noreply@blogger.com21tag:blogger.com,1999:blog-1821501771687113470.post-59037340976779255152014-03-18T07:24:00.000-07:002014-03-26T20:02:16.140-07:00Love Beyond All MeasureI 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.Anonymoushttp://www.blogger.com/profile/17485321275748504745noreply@blogger.com1tag:blogger.com,1999:blog-1821501771687113470.post-76199790669469587042014-03-17T15:34:00.000-07:002014-03-17T15:40:01.545-07:00Need to Know BasisAnother 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.<br />
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.<br />
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.Anonymoushttp://www.blogger.com/profile/17485321275748504745noreply@blogger.com0tag:blogger.com,1999:blog-1821501771687113470.post-7081362678410159552014-03-16T19:54:00.000-07:002014-03-16T19:54:21.267-07:00When The Sun Just Won't ShineI 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.Anonymoushttp://www.blogger.com/profile/17485321275748504745noreply@blogger.com2tag:blogger.com,1999:blog-1821501771687113470.post-61434000508351481892014-03-15T09:18:00.001-07:002014-03-15T23:13:52.646-07:00Advanced Care Plans and Reading the Fine PrintPostcript 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.)Anonymoushttp://www.blogger.com/profile/17485321275748504745noreply@blogger.com0tag:blogger.com,1999:blog-1821501771687113470.post-65271929338203025172014-03-14T22:45:00.002-07:002014-03-14T22:51:13.464-07:00When Intervention is Welcome in my Palliative JourneyWarning again of some more graphical medical content, so feel free to take a pass.<br />
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.Anonymoushttp://www.blogger.com/profile/17485321275748504745noreply@blogger.com0tag:blogger.com,1999:blog-1821501771687113470.post-31211332158663148902014-03-13T22:33:00.000-07:002014-03-13T22:33:15.323-07:00The Greatest GiftsFeels 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 changes...as 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.Anonymoushttp://www.blogger.com/profile/17485321275748504745noreply@blogger.com4tag:blogger.com,1999:blog-1821501771687113470.post-80459787326378038462014-03-12T23:08:00.003-07:002014-03-12T23:08:59.207-07:00When You Feel Like More Than A PatientYou 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.<br />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.Anonymoushttp://www.blogger.com/profile/17485321275748504745noreply@blogger.com0tag:blogger.com,1999:blog-1821501771687113470.post-66927476371373771022014-03-11T19:30:00.000-07:002014-03-11T19:32:24.037-07:00Lessons in HumilityPlease 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 rescue....to 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, Carol...Jill...so 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.<br />
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.Anonymoushttp://www.blogger.com/profile/17485321275748504745noreply@blogger.com2tag:blogger.com,1999:blog-1821501771687113470.post-20336451942675465772014-03-08T12:52:00.000-08:002014-03-08T22:23:19.939-08:00The 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 evolves...my 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 aloneAnonymoushttp://www.blogger.com/profile/17485321275748504745noreply@blogger.com1tag:blogger.com,1999:blog-1821501771687113470.post-58976336108888861092014-03-06T18:26:00.002-08:002014-03-06T18:26:56.042-08:00To Sleep, Perchance to DreamThere 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.Anonymoushttp://www.blogger.com/profile/17485321275748504745noreply@blogger.com4tag:blogger.com,1999:blog-1821501771687113470.post-80413891025104376012014-03-01T16:45:00.002-08:002014-03-01T16:45:33.215-08:00Mrs. In-BetweenIt 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 to...here, 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.Anonymoushttp://www.blogger.com/profile/17485321275748504745noreply@blogger.com1tag:blogger.com,1999:blog-1821501771687113470.post-82900979394860381202014-02-23T19:49:00.001-08:002014-02-23T19:49:42.370-08:00AppreciationSo I felt compelled to pop in to express my sincere appreciation for the latest pair of healing hands that have tended to me when I was falling. Last night the lovely Kate, part of the team of unsung heroes who provide home care-based nursing to palliative and other patients through Island Health - came calling when reaching out for help became necessary. I can't say enough about the feeling of reassurance when she came to call, checking all of my vital signs and talking me through - gently and with great compassion - recommending a new course of treatment to my family doctor to help ease the congestion that has taken root in my chest. It is hard for any of us to reveal our weakness, our dependence when our bodies get the better of us - and feeling the freedom to reach out without risk of judgement, knowing the person who shows up at the door - brings with them a wealth of experience and depth of caring, inspires a sense of confidence and peace that is hard to put into words. I have tried, over and over, to explain how valuable this service is - a service I barely knew existed before I found myself falling with only a phone number to call. Day or night - weekday or weekend - they are there - these angels - sweeping in, taking charge and leaving you feeling like you have been touched by greatness that is not fully recognized in the behemoth that is our health care system. I say this knowing health authorities will be in the throes of finalizing budgets - making difficult decisions about what can be sustained. I can only say that it would be foolish and cruel indeed to abandon this life-sustaining service and confine patients like me to ER waiting rooms when additional support is necessary. So this is for Kate and Joan and Stephanie and every other nurse who has tended to me in my hour of need. I send my love, my thanks and my sincere appreciation for what you so modestly and quietly give.Anonymoushttp://www.blogger.com/profile/17485321275748504745noreply@blogger.com0tag:blogger.com,1999:blog-1821501771687113470.post-49448820004626833252014-02-22T09:53:00.001-08:002014-02-22T09:53:30.113-08:00Time to Step Away...If you can't say anything nice, don't say anything at all - an adage passed on by my mom that I wished I had adhered to more closely throughout the course of my life. I think of this after another day where agitation got the best of me - an afternoon spent pacing aimlessly with no place to find comfort - desperate - talking to the home care nurse and my family doctor - ingesting anything I could to make it stop and finally giving myself a shot before passing out around 4pm and waking up in a daze at 630 this morning. There are more of these bad days now - a new plan - new medication which is on its way - but wondering - always searching - for the meaning behind this - for the sign I just can't make out from my current vantage point. It all seems too repetitive now - like a story that should have come to an end with the work of a strong editor. So it is time for a break - for some time to absorb that change has come - to thank those who have responded publicly and privately to this story and to do what is necessary now to prepare for what is to come.Anonymoushttp://www.blogger.com/profile/17485321275748504745noreply@blogger.com0tag:blogger.com,1999:blog-1821501771687113470.post-87686409794175105192014-02-19T19:28:00.001-08:002014-02-19T20:59:45.641-08:00MilestonesWe're only human....skin and bones, tissues and organs - all of the inner workings that like a clock we don't question...just an inherent faith that everything inside is doing the job it was meant to do in this complex, amazing system. When parts fail it always comes as a shock - no matter what has led up to it. I think of this as I face two major milestones in the coming month. A birthday I still am not entirely confident I will see and the anniversary of the date when I got the fateful phone call that my kidneys were failing and I had to head to the hospital without passing go. It is hard to sum up what this year has been for me....a birthday last year spent in sheer oblivion...a few weeks more of abject denial - then that single phone call that changed everything. But I can only believe life was meant to unfold this way - that what I have gained and experienced - the love that I have been showered with - the communion of friends old and new - the many lessons I continue to learn as I ride this storm. The deep appreciation for the loving hands of the many care providers, my beloved family doctor, Leah Norgrove, my unfailing cadre of home care and palliative care nurses (particularly Joan) who have buoyed me up through the rougher patches and my family for whom there are simply no adequate words. All of this meant to be...all of it a necessary exploration...and through it all, the sale of our house, the purchase of a new property, major downsizing, a move followed by all of the little touches...and here we are - unclear about what comes next, what to expect - needing nothing that money can buy...wanting everything and nothing...wanting to be held, babied, not looking back and wishing for what I had - just appreciating that there was a past that held something so much more than pain - filled with the faces of people who enriched me, challenged me, tolerated me, loved me...and the soft whisper of voices encouraging me to go forward, stick to my guns, do the right thing when I could. Through it all, the ever present hum of the roller coaster...so familiar, arms in the air less tentatively than before...still riding.Anonymoushttp://www.blogger.com/profile/17485321275748504745noreply@blogger.com0