(See all posts related to Electra's ongoing treatment)
It's been nearly two months. That's weird to me. Like so many big events in life, the time since Electra died (I'm trying to make myself say this instead of "passed on" or some other euphemism) has maintained that weird dichotomy of seeming like it was just yesterday, and yet that it was ages ago. I don't know whether it's shock that does this, or we just don't really grasp the passing of time as much as we think we do. But in terms of progress, it's been a rather eventful two months. I've attended two memorials on two continents, emptied a flat, visited friends and family (mine and Electra's), had a visit paid to me by my brother, moped around the house for a few weeks and returned to work. It's been an intense period, but I'm increasingly aware that this period is drawing to a close. Normalcy is beginning to dawn anew, and though a rocky path lies between that sense of regularity and myself, it's a good destination to have.
You see, any sense of normalcy I once had (and let's be honest, I had a tenuous grasp at best on the concept at even the best of time) has been rather shattered. I made a point throughout Electra's treatment to spend time in London with friends to avoid becoming completely mired in sickness and despair. So I've not been totally disconnected. But for nearly a year and a half, my life has been split firmly between two cities to an even greater extent than when we were in a committed but long-distance relationship. Moving between two locations makes it hard to truly settle or feel at home. Moreover, the sword of Damocles was ever-present: even when things were going comparatively well, the spectre of sickness and death loomed large. So "normal" was quietly packed away in the closet. It's now time to dust off that box and try it on for size once more.
This comes in many forms. Work is a big feature. Although I'm glad to have taken off the full four weeks that I did, I'm very much ready for a return to routine. The first few days and even weeks of my time off were filled with things that needed to be done-organising the memorial, emptying Electra's flat, and so forth. The last week of my time off was spent with my brother and was a fantastic time. But in-between those two was the thoughtful time. The time to collect thoughts and come to grips. That was vital, and again I'm glad to have had it. But near the end, it started to settle firmly into mopey territory. Suddenly the days were spent lying in bed or drifting around my empty house. And that's not good.
I know myself pretty well, and one of my failings is a periodic tendency for what I lovingly call "low mood" periods, but are realistically slightly depressive episodes. These used to be nearly crippling when I was younger and have mostly faded from memory. However, every few months, one will rear its head and I will get "blue", often for no reason. And this makes me susceptible to getting even more down in response to events like those of recent months. And I know that moping around does me no good as I will spiral further into depression. Instead, I need to get out; see people; do some work; sleep and eat to a schedule. So I'm very much glad to be back to work and to my social circles.
On the other hand, I know this is an ongoing process, and that I should–and do–expect periodic resurgences of emotion and depression, and need to brace for those. This will take me awhile to process. I've already seen some effects of this. A few too many drinks and I can expound and rant and get overly emotional to close friends who deserve better. Quiet periods or certain songs, shows or thoughts can trigger memories and emotions. But that's all part of the process, and I'm dealing with it OK. And I'm trying to get some good from the experience.
If there is to be a silver lining from the hell of the last year and a half, I feel it is this: life is short. I know how much of a cliché it is to come to this realisation after a tragic loss, but there's a good reason why it's a cliché: it damned true. In his amazing and moving Stanford commencement speech in 2005, Steve Jobs touches on this issue, stating that knowing you are going to die frees you to do what you want, and it is this message I am trying to embrace. You see, I rarely just do what I want. I think. I ponder. I over-analyse and weigh up options. I get second, third and fourth opinions and ponder more. I rarely make a truly awful decision, but I miss out on many great opportunities because my indecision drags me into the quagmire of inaction. And I want to change this.
Deliberation has a vital place. Decisions should be made carefully, and risk mitigated. But to become so risk-averse as to not take chances deprives you of some of the best occurrences of your life. And it fills you with regrets. Mark Twain once said "Twenty years from now you will be more disappointed by the things that you didn't do than by the ones you did do. So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover." And he was right. When I think back to my regrets, I rarely think of that which I tried and failed at. I think of the times I didn't even step up to the plate, and just let the pitch go by. Those are the things that eat at me.
So I'm resolving to do better, and have done so to some degree already. The results haven't been perfect, and neither will they be in the future. I have faith, however, in my closest friends. Even when I make a misstep and go too far or make a poor decision, I trust in those around me to help support and love me and with their strength I will persevere. My friends are precious to me and their love and care has buoyed me through the most turbulent seas I've traversed; I know they will continue to do so, just as they will tell me when I'm dangerous waters above my head, when my carpe diem attitude takes me perhaps too far.
But I will try. Because the trying is the important thing. I'm young, in one of the greatest cities in the world and have good people around me. Now is the time to try. I know I will fail sometimes. I know I will do things that seem stupid in retrospect or make things difficult or uncomfortable. But I will try them. I have too. I'm sick of wondering "what if?". Even when the outcome isn't what I hope for, the attempt and the asking is what's important, sometimes more so than the outcome itself.
Electra had a bubbly, cheerful enthusiasm which was infectious. I lament how much of our time was spent with me tied to a Ph.D. I wasn't fond of and how much of our time was limited by geographical or financial constraints. I don't want to make that mistake again. I want to make new mistakes. Fun mistakes. I want to go out on a limb more, to strive for the freshest fruit on the furthest boughs. This is how I will force myself to return to normalcy: I will push for a better normalcy. This is how I will treasure Electra's memory: I will forego fear and will live my life fuller than before.
Regrets are about lamenting a past that cannot be changed. That's not helpful; what is helpful is to mourn, to remember but above all else, to learn. We learn from what we've done and we grow from pain and tragedy. And as long as we are in the land of the living, we have a duty to enjoy that. To live, to laugh and to love. 2012 is off to a pretty shitty start. But I will be doing myself, and Electra's memory, a disservice to dwell and hate and mope. Like Canute, I can command the tides of history to recede as much as I want, but it will never happen. Instead, I will embrace life and do my best to honour and cherish the memories I have and to push forward to the next, better, memories. Or–if things go crazy enough–at least I'll get some cool stories out of it.
Friday, May 11, 2012
Monday, April 16, 2012
Electra & AML: My Phantom
(See all posts related to Electra's ongoing treatment)
There is a fairly well-known phenomenon in people who have suffered the loss of a limb, be it through accident or amputation: phantom limb syndrome. In essence, this is the sensation that a missing limb (or sometimes even an organ) is still present. The person suffering such a condition feels as if their arm (or whatever) is still present and moving around, long after this is provably untrue. I don't know a ton about this, but my general understanding is that it is a form of muscle memory and a result of the complexity of muscle movement. When we move our arms around, we are involving dozens of muscles and not just in the arm-the shoulder, back, chest and flank muscles all play a role. When the arm is no longer there, these muscles "remember" the movements they've been conditioned to make and the impulse to do so remains.
I am starting to feel that I am experiencing "Phantom Electra Syndrome". In a very real way, I lost a key part of myself a month ago (the one-month anniversary is the 16th, which it will be by the time I hit "publish" on this entry). Losing a loved one involves a quick and obvious loss, as in the loss of the limb itself to an amputee. But the lingering effects go beyond this most acute removal. Because Electra was intricately involved in innumerable aspects of my life, not just the times and places where I interacted with her directly. And the muscle memory, the default reactions I got used to over three and a half years, remain.
Let me give one example: this past week, I returned to work on Thursday and Friday. On Friday, I needed to mail a letter, which precipitates a walk across the bridge to the post office near my office. In the past year, while Electra was ill, I would take this time to call her. I wasn't actively working and chatting didn't slow me down, so I could ring her up for a few minutes–often the longest conversation she could muster–without feeling like I was neglecting my work to do so. So, on Friday, when I strolled over the bridge over the A3, I instinctively reached for my phone as if to call her up and ask her how her day was going. Similarly, the night before, I almost tried to call her from the pub quiz, while it was being marked, to discuss the questions that had been asked that night. That was our routine-when the quiz finished and was being checked over, I'd fill her in on as many questions as I could remember, especially those that stumped us. That was our routine, since she wasn't in London but loved a good pub quiz.
Complaining about my morning commute. Sending her funny pictures I find on the internet. Telling her about a cool-looking film coming out soon. Discussing travel plans and meal ideas. All of these things became so habitual and frequent for Electra and I that they are all but hard-wired into my brain. Habit formation is a fascinating topic, but one of the key takeaways is this: the more we perform the same action, the less our brains actively work to perform that task: it just becomes rote repetition, and straying outside that is difficult. We form new pathways-of-least-resistance in our brains that ensure that performing these tasks is effectively automatic.
A friend of mine told me that returning to a routine would be the hardest part of all this, for exactly this reason. I don't think she's right in that it's the hardest I've experienced, but it's not easy. Right now, my daily routine involves lots and lots of small but frequent Electra pathways. My unthinking habitual response in many situations involves her in some way, and even though I know she is gone, I continue to reach for my phone, or think about forwarding a funny link to her, or even just reflect on how much she would like or hate a particular thing. She is my phantom limb.
There is a fairly well-known phenomenon in people who have suffered the loss of a limb, be it through accident or amputation: phantom limb syndrome. In essence, this is the sensation that a missing limb (or sometimes even an organ) is still present. The person suffering such a condition feels as if their arm (or whatever) is still present and moving around, long after this is provably untrue. I don't know a ton about this, but my general understanding is that it is a form of muscle memory and a result of the complexity of muscle movement. When we move our arms around, we are involving dozens of muscles and not just in the arm-the shoulder, back, chest and flank muscles all play a role. When the arm is no longer there, these muscles "remember" the movements they've been conditioned to make and the impulse to do so remains.
I am starting to feel that I am experiencing "Phantom Electra Syndrome". In a very real way, I lost a key part of myself a month ago (the one-month anniversary is the 16th, which it will be by the time I hit "publish" on this entry). Losing a loved one involves a quick and obvious loss, as in the loss of the limb itself to an amputee. But the lingering effects go beyond this most acute removal. Because Electra was intricately involved in innumerable aspects of my life, not just the times and places where I interacted with her directly. And the muscle memory, the default reactions I got used to over three and a half years, remain.
Let me give one example: this past week, I returned to work on Thursday and Friday. On Friday, I needed to mail a letter, which precipitates a walk across the bridge to the post office near my office. In the past year, while Electra was ill, I would take this time to call her. I wasn't actively working and chatting didn't slow me down, so I could ring her up for a few minutes–often the longest conversation she could muster–without feeling like I was neglecting my work to do so. So, on Friday, when I strolled over the bridge over the A3, I instinctively reached for my phone as if to call her up and ask her how her day was going. Similarly, the night before, I almost tried to call her from the pub quiz, while it was being marked, to discuss the questions that had been asked that night. That was our routine-when the quiz finished and was being checked over, I'd fill her in on as many questions as I could remember, especially those that stumped us. That was our routine, since she wasn't in London but loved a good pub quiz.
Complaining about my morning commute. Sending her funny pictures I find on the internet. Telling her about a cool-looking film coming out soon. Discussing travel plans and meal ideas. All of these things became so habitual and frequent for Electra and I that they are all but hard-wired into my brain. Habit formation is a fascinating topic, but one of the key takeaways is this: the more we perform the same action, the less our brains actively work to perform that task: it just becomes rote repetition, and straying outside that is difficult. We form new pathways-of-least-resistance in our brains that ensure that performing these tasks is effectively automatic.
A friend of mine told me that returning to a routine would be the hardest part of all this, for exactly this reason. I don't think she's right in that it's the hardest I've experienced, but it's not easy. Right now, my daily routine involves lots and lots of small but frequent Electra pathways. My unthinking habitual response in many situations involves her in some way, and even though I know she is gone, I continue to reach for my phone, or think about forwarding a funny link to her, or even just reflect on how much she would like or hate a particular thing. She is my phantom limb.
Thursday, April 05, 2012
Electra & AML: The Memorial and Eulogy
(See all posts related to Electra's ongoing treatment)
It's been nearly three weeks since Electra died, and I apologise for not writing more in that time. Dying, it turns out, comes with a lot of paperwork. Utility companies, banks and the council have to be notified, along with countless others. Funerals arrangements made and memorial services planned, belongings sorted through, and so much more. More than that, there is a general sense of listlessness that comes when the inevitable actually occurs. It's hard to get motivated to do much. And when I do, it's more about trying to get out and see friends and spend time; I have observed in myself that the busier and more social I keep myself, the better off I am in many, many ways. So the blogging has fallen by the wayside, and for that I'm sorry. Moreover, in this post, I will be relatively brief, save for the text of my eulogy, which I will include in full below. I want to discuss what we did for the memorial, and talk a little about what it meant to me.
Electra was cremated on Thursday, March 22, six days after her death. The cremation was something we hadn't initially planned to attend; we thought it was something the funeral parlour sorted out and we would simply collected the ashes. However, though this was certainly possible, a half-hour slot in the chapel was allotted, whether we used it or not, so Paul, Anastasia and I decided to do a small observance, despite the fact that we were not doing a traditional full funeral service, but instead a memorial to be held two days hence. The service was just we three plus two of Electra's closest friends, Emela and Kara. It was quiet and simple and intimate. Paul had selected a few pieces of music to the event, and had chosen a few poems about grieving and loss which had spoken to him, and he read these out loud. I said a few words about Electa and what she meant to me and why I thought she was special, and recited "The Egg" by Andy Weir, a piece that I found very profound, though I'm not sure why; it just resonated with me. It was a time of quiet reflection, and when we were finished, the curtains were closed and we left the chapel, serene and reflective. We had a lunch which was boisterous and in which we were able to reminisce and share a little more, though obviously our spirits were dimmed.
I think the cremation service, though not something we'd initially planned, was perfect. The memorial we had planned was to be a more lively affair, so the cremation was a chance to be a little more sad, a little more intimate, and a little more somber. And while it was very important to me that the memorial service be as positive as possible, I'm glad we took the time to be a bit more somber.
The memorial, on Saturday (March 24th), was also exactly as I'd hoped, though in a very different way. We held it in the Birmingham Museum and Art Gallery, in a beautiful, bright room called the Waterhall Room. We posted up dozens of pictures of Electra, arranged for tea, coffee and biscuits, and had a table at the front for music playing and speaking. We allowed for half an hour to an hour of milling around and chatting, then began the service to the tune of "I'd Rather Be With You" by Joshua Radin, a favourite artist of Electra and I, who we'd seen in concert twice; that particular song was "our song". I thanked everyone for coming, asked for donations in Electra's name to the hospital ward that treated her and then Paul came up to read a few poems again, one of which he'd read at the cremation, the other a childhood favourite of Electra's. After, I asked Emela and Kara to speak, and played a pre-recorded video from her other closest friend, Sara, who is on sabbatical in Australia and thus couldn't attend. Each of her friends said beautiful, moving and heartfelt things with almost no overlap; a testament to how deep and amazing a character Electra really was. The thoughts and recollections of those three were truly beautiful and captured the woman I knew so well, while revealing some aspects with which I was less familiar.
The second piece of music selected for the event was "Wildflowers" by Dolly Parton, Linda Ronstadt and Emmylou Harris, another favourite of Electra's. This was a song with which I wasn't particularly familiar, and Electra and I hadn't listened to it together. Ever since, though, I cannot stop listening to it. It's a very beautiful piece and reminds me of her, even though I'd never heard her play it. When the song concluded, I gave the eulogy I'd prepared (and read to Electra weeks before her death-one of the rare benefits of knowing the end is coming). The text is below, as I want to keep it separate. Finally, we played the third piece of music, "I'll Fly Away" by Alison Krauss and Gillian Welch; this was especially poignant as it was the piece Paul had selected to play while the curtains closed during the cremation ceremony. As a result, I've listened to it quite a bit since the memorial, but with a much more melancholy association. When this song finished, we toasted Electra with some nice single-malt scotches (her favourite spirit) and concluded the formal part of the service. This allowed some time for people to mill around some more, chat and share stories, and to focus on the wonderful woman Electra was, rather than the loss that was now so evident.
After the ceremony wrapped up, we went to a nearby bar for a few drinks, a lovely Thai restaurant for dinner, then more drinks and dancing at a club in town. The numbers declined with each step. At the ceremony, I would guess about 60-70 people were present; drinks and dinner was more like 20 and by the club we were but six. I was thrilled with how many people were able to attend, and from such disparate background: colleagues of Electra's and teachers at her favourite schools; friends of hers from her childhood and the recent past; friends of mine, some of whom hadn't even met her but wanted to show support. It was a great group, and I am immensely thankful to all who turned out for some or all of the day. It meant the world to me to see the love we had all around us.
I won't bore you with the details of drinks, dinner and dancing; suffice to say it was an exuberant and fun afternoon, evening and into night. What I will say though, is that I don't think the day could have gone any better. It was beautiful and sunny; support came from all corners and in numbers beyond my expectations; the speeches were evocative and charming and truly captured Electra's unique essence; and though very obviously tinged with sadness and loss, the attitude was one of celebration for the times we had and the woman who'd enriched our lives. Rending of clothes and hair was avoided, as was desolation and despair. It was a wonderful, warming, charming experience, and one I am sure Electra would have loved to have been a part of. Nothing can truly salve the loss of someone like Electra, but knowing she was so deeply loved, admired and respected, and saying goodbye in such a perfect way brought a smile to my weary self.
---------------
The Eulogy I wrote, and read, is as follows:
It's been nearly three weeks since Electra died, and I apologise for not writing more in that time. Dying, it turns out, comes with a lot of paperwork. Utility companies, banks and the council have to be notified, along with countless others. Funerals arrangements made and memorial services planned, belongings sorted through, and so much more. More than that, there is a general sense of listlessness that comes when the inevitable actually occurs. It's hard to get motivated to do much. And when I do, it's more about trying to get out and see friends and spend time; I have observed in myself that the busier and more social I keep myself, the better off I am in many, many ways. So the blogging has fallen by the wayside, and for that I'm sorry. Moreover, in this post, I will be relatively brief, save for the text of my eulogy, which I will include in full below. I want to discuss what we did for the memorial, and talk a little about what it meant to me.
Electra was cremated on Thursday, March 22, six days after her death. The cremation was something we hadn't initially planned to attend; we thought it was something the funeral parlour sorted out and we would simply collected the ashes. However, though this was certainly possible, a half-hour slot in the chapel was allotted, whether we used it or not, so Paul, Anastasia and I decided to do a small observance, despite the fact that we were not doing a traditional full funeral service, but instead a memorial to be held two days hence. The service was just we three plus two of Electra's closest friends, Emela and Kara. It was quiet and simple and intimate. Paul had selected a few pieces of music to the event, and had chosen a few poems about grieving and loss which had spoken to him, and he read these out loud. I said a few words about Electa and what she meant to me and why I thought she was special, and recited "The Egg" by Andy Weir, a piece that I found very profound, though I'm not sure why; it just resonated with me. It was a time of quiet reflection, and when we were finished, the curtains were closed and we left the chapel, serene and reflective. We had a lunch which was boisterous and in which we were able to reminisce and share a little more, though obviously our spirits were dimmed.
I think the cremation service, though not something we'd initially planned, was perfect. The memorial we had planned was to be a more lively affair, so the cremation was a chance to be a little more sad, a little more intimate, and a little more somber. And while it was very important to me that the memorial service be as positive as possible, I'm glad we took the time to be a bit more somber.
The memorial, on Saturday (March 24th), was also exactly as I'd hoped, though in a very different way. We held it in the Birmingham Museum and Art Gallery, in a beautiful, bright room called the Waterhall Room. We posted up dozens of pictures of Electra, arranged for tea, coffee and biscuits, and had a table at the front for music playing and speaking. We allowed for half an hour to an hour of milling around and chatting, then began the service to the tune of "I'd Rather Be With You" by Joshua Radin, a favourite artist of Electra and I, who we'd seen in concert twice; that particular song was "our song". I thanked everyone for coming, asked for donations in Electra's name to the hospital ward that treated her and then Paul came up to read a few poems again, one of which he'd read at the cremation, the other a childhood favourite of Electra's. After, I asked Emela and Kara to speak, and played a pre-recorded video from her other closest friend, Sara, who is on sabbatical in Australia and thus couldn't attend. Each of her friends said beautiful, moving and heartfelt things with almost no overlap; a testament to how deep and amazing a character Electra really was. The thoughts and recollections of those three were truly beautiful and captured the woman I knew so well, while revealing some aspects with which I was less familiar.
The second piece of music selected for the event was "Wildflowers" by Dolly Parton, Linda Ronstadt and Emmylou Harris, another favourite of Electra's. This was a song with which I wasn't particularly familiar, and Electra and I hadn't listened to it together. Ever since, though, I cannot stop listening to it. It's a very beautiful piece and reminds me of her, even though I'd never heard her play it. When the song concluded, I gave the eulogy I'd prepared (and read to Electra weeks before her death-one of the rare benefits of knowing the end is coming). The text is below, as I want to keep it separate. Finally, we played the third piece of music, "I'll Fly Away" by Alison Krauss and Gillian Welch; this was especially poignant as it was the piece Paul had selected to play while the curtains closed during the cremation ceremony. As a result, I've listened to it quite a bit since the memorial, but with a much more melancholy association. When this song finished, we toasted Electra with some nice single-malt scotches (her favourite spirit) and concluded the formal part of the service. This allowed some time for people to mill around some more, chat and share stories, and to focus on the wonderful woman Electra was, rather than the loss that was now so evident.
After the ceremony wrapped up, we went to a nearby bar for a few drinks, a lovely Thai restaurant for dinner, then more drinks and dancing at a club in town. The numbers declined with each step. At the ceremony, I would guess about 60-70 people were present; drinks and dinner was more like 20 and by the club we were but six. I was thrilled with how many people were able to attend, and from such disparate background: colleagues of Electra's and teachers at her favourite schools; friends of hers from her childhood and the recent past; friends of mine, some of whom hadn't even met her but wanted to show support. It was a great group, and I am immensely thankful to all who turned out for some or all of the day. It meant the world to me to see the love we had all around us.
I won't bore you with the details of drinks, dinner and dancing; suffice to say it was an exuberant and fun afternoon, evening and into night. What I will say though, is that I don't think the day could have gone any better. It was beautiful and sunny; support came from all corners and in numbers beyond my expectations; the speeches were evocative and charming and truly captured Electra's unique essence; and though very obviously tinged with sadness and loss, the attitude was one of celebration for the times we had and the woman who'd enriched our lives. Rending of clothes and hair was avoided, as was desolation and despair. It was a wonderful, warming, charming experience, and one I am sure Electra would have loved to have been a part of. Nothing can truly salve the loss of someone like Electra, but knowing she was so deeply loved, admired and respected, and saying goodbye in such a perfect way brought a smile to my weary self.
---------------
The Eulogy I wrote, and read, is as follows:
As most of you probably know, my name is Dan and I've been Electra's enamorado (she insisted I use that word instead of boyfriend) for the past three and a half years. We met at the University of Manchester mature and postgraduate students' society (she was mature, I was a postgrad) when she overheard me speaking Canadian. In a sea of Brits, that caught her attention-never before or since has being loud-mouthed gained me so much. I loved Electra very deeply and though our relationship had the ups and downs that any couple has, she was the most important part of my life for a long time, and I will miss her profoundly.
When confronted with the death of a loved one, especially one taken from the world so early and so unjustly, emotions can be unpredictable; you never know how you'll feel. For me, it was anger. I was angry at the unfair twists of life, and at myself for not being able to do anything. I wanted to believe in God just to be angry at Him. I wanted to be angry at medical science for being unable to fix her (and for the pain and discomfort of the treatment). There are few things in life as terrifying as realising your are completely powerless, and I wanted to lash out and strike down anything and everything. But I couldn't do that. Because it's not helpful and it's not useful-I don't believe in God and I don't believe in fate, so I've never held any illusion that life should or would adhere to any standard of fairness, as fervently as I might wish it would. But more than that, my anger wouldn't make her feel better and it wouldn't make me feel better. So instead, I chose hope; I chose optimism. And I chose that because of her; because it's what she'd want.
I used to think that it was a tragedy when two people would get together and one or both would change who they were. I saw it as a betrayal of oneself, ceding to the whims and demands of the other. It's easy to view changes to one's nature as giving up the real you. It's only when you meet someone so special that you can't help but change that you realise the reality: it's not a sacrifice. You don't change because you want to satisfy that other person, you change because their very nature makes you want to. You become a better person without even realising it, because their goodness is infectious and aspirational and the changes makes you both a better "us". And that's who Electra was to me. I tried to be a better person because it made *us* better, not because it made *me* better.
When Electra would set her mind to something, she made it hers. Changes and altered plans could stress and scare her and make her freak out for awhile, but then I would see her mentally set herself to the task and nothing could stop her. Like a switch being flipped, she would retrench and all trepidation would vanish under the wheels of her determination. And that determination and love is part of what gave me the strength to keep hope alive and to try and keep strong throughout the trying and tiring ordeals of the past ___ months. By trying to be as strong as she was, I was able to focus on what we had instead of what we lost. One of the most disheartening aspects of a sickness like this is that it progressively dashes every hope, one at a time-you hope the first rounds of chemo work. When that fails, you hope the radiation and bone marrow transplant works. Then you hope the new type of chemo works, then that you will at least get the chance to travel one more time before the end. Finally, you hope that the final days will be easy and comfortable. But the sickness takes even that away. It is desperately easy to surrender to hopelessness in this situation, but Electra never did. As she once said to me, "whatever else happens, we got one more day together today and one more night tonight. And that's something."
Electra loved easily and openly, and she did so with her whole heart (even more so after a few glasses of wine-one of my friends described her as the best drunk in the world because she would bubble and hug and exude warmth and love to friends and strangers alike). She was passionate and optimistic, pushing hard to see the best possible outcome of every situation and every person. It's hard to know how to sum up an entire life, but the best measure I know is to gauge based on the people who choose to surround and join in that life, and to give freely of their love. Electra attracted the best kind of people and the outpouring of love and admiration for her speaks volumes about the strength of her character and the greatness of her nature.
Of course, there will always be regrets. I regret the times we argued or the times our plans went awry and every time I treated her in any way worse than I should have. But more than that, I regret the unrealised dreams, the plans we had but never executed. That we never managed to live together. That we never got to adopt our puppies (Gaius and Caprica) or our kittens (Shockley and Bardeen). That we never made it to Rome, Rwanda, Brazil, Japan, Jordan, Australia or any of the other places we longed to visit (basically any country not currently involved in an active civil war). We never got to eat together at a Michelin-starred restaurant and she never got to take me to the family cottage in New York State. So I do have regrets.
But I choose to look at the positive. For more than three years, I got to experience something that seven billion people on this planet never have: life with Electra Elizabeth Risacher. I got to hug and cuddle her, to laugh with her and hold her while she cried. I got to spend time with her on four continents and in the three biggest cities in the UK (also Cardiff). I made us countless blueberry pancakes, learned to love sushi and tolerate oysters and received a solid grounding in the finer points of steak, wine and-of course-champagne. I managed to attract and keep a girl who was not only beautiful and passionate, loving and patient, but who could quote Star Trek and Battlestar Galactica with the best of them.
So, as much as my heart aches for her loss, as empty and cold as the world feels for her absence, I am blessed and fortunate because for more than three years my life was illuminated by the glow of Electra's love and that warming light makes everything better. To wrap up, I'd like to tell you a little something most people didn't know about Electra: she would talk in her sleep. Normally just gibberish and mumbles, she would sometimes pop out some full sentences; these were sometimes downright terrifying (ladies, if you want to see how high your boyfriend's heart rate can jump, wait until he's just drifting off to sleep then mumble in your sleep that you think you might be pregnant even though you have no reason to think so when you're awake). But my all-time favourite was when we were in Tunisia. As she drifted off to sleep, Electra told me that we needed to make sure we remembered to stop by the grocery store the next day to buy fireflies to light our way home. My love, wherever you are, I know you have that light and I know you'll get home safely. I love you always and your glow will always be with me.
Friday, March 16, 2012
Electra & AML: Farewell My Sweetness
(See all posts related to Electra's ongoing treatment)
I'm afraid that I have to announce this, but Electra Elizabeth Risacher passed on this morning. At approximately 5:04AM GMT, after a short time in coma, she drew her last breath. She was surrounded by her mother, father and myself and died with us holding her hands and stroking her hair. She finished her life as she wanted to: in her own bed, at home, surrounded by love and family, largely pain-free and calm. Her last truly coherent thoughts were to express her love for her family. She will be missed beyond all measure and the world is truly a darker place today for her absence, but we are glad that her passing was without excess trauma or pain and that she didn't linger long in her coma. Funeral details will follow; for now, we thank you all for your love and compassion in these difficult times.
I'm not going to go into a great amount of detail on this at the moment. My mind isn't in the right place, and I need to gather my thoughts before I can write anything of substance. But more will follow soon. I just wanted to make this announcement.
I'm afraid that I have to announce this, but Electra Elizabeth Risacher passed on this morning. At approximately 5:04AM GMT, after a short time in coma, she drew her last breath. She was surrounded by her mother, father and myself and died with us holding her hands and stroking her hair. She finished her life as she wanted to: in her own bed, at home, surrounded by love and family, largely pain-free and calm. Her last truly coherent thoughts were to express her love for her family. She will be missed beyond all measure and the world is truly a darker place today for her absence, but we are glad that her passing was without excess trauma or pain and that she didn't linger long in her coma. Funeral details will follow; for now, we thank you all for your love and compassion in these difficult times.
I'm not going to go into a great amount of detail on this at the moment. My mind isn't in the right place, and I need to gather my thoughts before I can write anything of substance. But more will follow soon. I just wanted to make this announcement.
Electra Elizabeth Risacher
October 20, 1979 - March 16, 2012
October 20, 1979 - March 16, 2012
Farewell my wonderful, beautiful sweetness. You are loved and you are missed.
Thursday, March 15, 2012
Electra & AML: The Asymptote
(See all posts related to Electra's ongoing treatment)
There is a concept in math that-though seemingly obvious-actually took millennia to invent: the concept of zero. The reason is that the difference between one and zero is unlike the difference between any other two numbers. The concept of a vacuum is so disconcerting to our minds that it actually inspired a debate amongst Greek philosophers as to whether such a concept even had merit. So, zero is kind of a big deal. The difference between something and nothing is monumental.
One of the many ways in which this comes into play is the idea of an asymptote. Without getting too math-nerdy, an asymptote is a curve which forever approaches a number (often, but not necessarily zero), but never touches it. For example, think of starting with a pile of money and cutting it in half every day. On day one, you have $100. Then $50, $25, $12.50, $6.25, etc. With each step, you get closer and closer to zero, but you will never really get there. An asymptote is a mathematical concept for a progression that always seems to be very very close to something, but never actually arrives.
Why am I talking about this? Because our asymptote is approaching zero. But ours will hit zero, unlike the math's. And I've only just realised, I was treating this illness like a true asymptote. I knew our ordeal would be long and that a decline was inevitable. I knew that we would approach death, getting closer and closer with each passing day, and near the end coming so close that the difference was barely observable. But in a very real way, I'm only just now realising that Electra is going to hit zero, and she's going to hit it soon. And I've not really realised what that means until now. Because I thought I was ready for what was to come; but really, I was only ready for the asymptote.
You see, we knew from the outset that this was going to be a long haul struggle, and it has been. Even when the outcome was certain, the hope finally dissipated, the prognosis was a slow slide into oblivion. So, you get used to the slide, you adjust to the asymptote. Things get worse, but you expect them to, and you realign your expectations accordingly. We got a wheelchair when Electra found walking tiring. We changed her meds as she reacted better or worse to her regimen. We added in meal replacements, adjusted furniture and got medical aids to accomodate her declining state. We've been carers of a sick person for over a year now and that simply became the norm. And when it got worse, that was simply another adjustment. As she got more and more tired, our norm shifted, but stayed in the same ballpark.
Now it's different. Electra is almost completely gone at this point. I don't know exactly what constitutes a coma as opposed to an ongoing and deep sleep, so I don't know if she's technically in a coma or not, but she might as well be if she isn't. She hasn't been awake in any meaningful way in the past day. She stirred at times, even spoke periodically as recently as this morning (asking for water and taking her medications). But today was the end of any responsiveness. As I write this, Electra is beside me. Her breathing is ragged and shallow, her eyes open a slit and unfocused. She is fully immobile, her limbs and extremities flaccid and motionless. She hasn't responded to being spoken to in hours. She is breathing and has a pulse, but everything that made her who she is, everything that defines the woman I fell in love with, is gone.
It turns out, the difference between something and nothing is bigger than I was ready for.
Objectively, I know that you can never be truly ready for something like this. You can prepare. You can make plans and discuss outcomes and intents. You can say "death" out loud to force yourself to accept that this is the reality. You can talk about what to do before and what to do after. You can-and I did-feel like you're ready. You're not. You can't be. Because you're only truly preparing for a further slide closer to zero and not for the drop to nothing.
We haven't yet hit zero, but it feels like we have. Electra is gone in every sense but the most fundamental biological functioning and she's not coming back. There is no hope of a last-minute turn-around, no chance that this is just another step along the decline. This is the beginning of the truest end, the end that awaits all of us. And it turns out I'm not ready for that.
I want another day, another week, another month or another year. I want to bounce up on the bed and blow a raspberry on her tummy until she convulses in laughter. I want to plan our next vacation. I want to adopt the puppies we longed for and even named (Gaius and Caprica, FYI). I want to see her giggle and clap her hands in glee like a child when she's excited about something. I want to rant to her about the latest Apple vs Microsoft development. I want to complain about the train fare and show her the new lights I affixed to my bike. I want to collect the keys to the first house we share. I want to take her for the first ride in the first car I'll buy. I want to cook her another batch of pancakes. I want our life together to truly begin. But that will never happen.
Let me use another, arguably even nerdier analogy. One of the fundamental concepts in quantum theory is the idea of the superposition. The idea says that for very small objects, we can never truly tell where they are at the same time as we can tell their momentum. The location of (for example) an electron orbiting a nucleus is defined by a 3D probability functions called a wavefunction. There is a certain chance it is in any given location, but nothing guaranteed. One of the weirder sides to this is that at any given time, the electron actually exists in all locations simultaneously. Only when its location is measured in some way does the wavefunction "collapse" and the actual location is set. The most famous thought experiment that stems from this is Shrödinger's Cat. I'll leave the details of the thought experiment to the reader, but the upshot is this: at one point, the cat is simultaneously dead and alive; only when the box is opened does the wavefunction collapse and the cat's nature become measurable.
Electra's wavefunction is collapsing. Even when her diagnosis was confirmed, I guess I instinctively felt there was a tiny sliver of hope. Technically, there is a chance, infinitesimal though it is, that an electron bound to a carbon atom in your thumb is actually located on the surface of the moon. It's unlikely but the possibility exists. Similarly, although I knew Electra's fate, a part of me clung to that most minute of hopes. That some twist would yet emerge. That as long as she was awake and conscious that it could still turn around. A zero-day cure could be found, or a dramatic reversal of fortune caused by a resurgent immune system. But moreover, just the vague, undirected hope that this wasn't it. That we'd have more time. And now, before my eyes, I can see that wavefunction collapse. There is nothing left but waiting for her breath to stop and her heart to be still. The essence of who she is has gone.
Many of the people who have written me to express support and condolences, (and I thank you all for doing so), have stated how they cannot even beging to understand how I feel. The reality is this: I can't either. I am empty and lonely and hopeless in a way I've never experienced. I feel broken and desolate. But beyond that, I just don't know. I don't think I can put a label on it beyond feeling wrong. The notion of a world without Electra in it is inconceivable, like waking up one day to find out that one plus one equals three. And yet here we are; for the first time, that world truly is upon us. I don't know how to react to a world so familiar, yet so completely alien. I'm not ready for this. I thought the asymptote would stretch on forever.
There is a concept in math that-though seemingly obvious-actually took millennia to invent: the concept of zero. The reason is that the difference between one and zero is unlike the difference between any other two numbers. The concept of a vacuum is so disconcerting to our minds that it actually inspired a debate amongst Greek philosophers as to whether such a concept even had merit. So, zero is kind of a big deal. The difference between something and nothing is monumental.
One of the many ways in which this comes into play is the idea of an asymptote. Without getting too math-nerdy, an asymptote is a curve which forever approaches a number (often, but not necessarily zero), but never touches it. For example, think of starting with a pile of money and cutting it in half every day. On day one, you have $100. Then $50, $25, $12.50, $6.25, etc. With each step, you get closer and closer to zero, but you will never really get there. An asymptote is a mathematical concept for a progression that always seems to be very very close to something, but never actually arrives.
Why am I talking about this? Because our asymptote is approaching zero. But ours will hit zero, unlike the math's. And I've only just realised, I was treating this illness like a true asymptote. I knew our ordeal would be long and that a decline was inevitable. I knew that we would approach death, getting closer and closer with each passing day, and near the end coming so close that the difference was barely observable. But in a very real way, I'm only just now realising that Electra is going to hit zero, and she's going to hit it soon. And I've not really realised what that means until now. Because I thought I was ready for what was to come; but really, I was only ready for the asymptote.
You see, we knew from the outset that this was going to be a long haul struggle, and it has been. Even when the outcome was certain, the hope finally dissipated, the prognosis was a slow slide into oblivion. So, you get used to the slide, you adjust to the asymptote. Things get worse, but you expect them to, and you realign your expectations accordingly. We got a wheelchair when Electra found walking tiring. We changed her meds as she reacted better or worse to her regimen. We added in meal replacements, adjusted furniture and got medical aids to accomodate her declining state. We've been carers of a sick person for over a year now and that simply became the norm. And when it got worse, that was simply another adjustment. As she got more and more tired, our norm shifted, but stayed in the same ballpark.
Now it's different. Electra is almost completely gone at this point. I don't know exactly what constitutes a coma as opposed to an ongoing and deep sleep, so I don't know if she's technically in a coma or not, but she might as well be if she isn't. She hasn't been awake in any meaningful way in the past day. She stirred at times, even spoke periodically as recently as this morning (asking for water and taking her medications). But today was the end of any responsiveness. As I write this, Electra is beside me. Her breathing is ragged and shallow, her eyes open a slit and unfocused. She is fully immobile, her limbs and extremities flaccid and motionless. She hasn't responded to being spoken to in hours. She is breathing and has a pulse, but everything that made her who she is, everything that defines the woman I fell in love with, is gone.
It turns out, the difference between something and nothing is bigger than I was ready for.
Objectively, I know that you can never be truly ready for something like this. You can prepare. You can make plans and discuss outcomes and intents. You can say "death" out loud to force yourself to accept that this is the reality. You can talk about what to do before and what to do after. You can-and I did-feel like you're ready. You're not. You can't be. Because you're only truly preparing for a further slide closer to zero and not for the drop to nothing.
We haven't yet hit zero, but it feels like we have. Electra is gone in every sense but the most fundamental biological functioning and she's not coming back. There is no hope of a last-minute turn-around, no chance that this is just another step along the decline. This is the beginning of the truest end, the end that awaits all of us. And it turns out I'm not ready for that.
I want another day, another week, another month or another year. I want to bounce up on the bed and blow a raspberry on her tummy until she convulses in laughter. I want to plan our next vacation. I want to adopt the puppies we longed for and even named (Gaius and Caprica, FYI). I want to see her giggle and clap her hands in glee like a child when she's excited about something. I want to rant to her about the latest Apple vs Microsoft development. I want to complain about the train fare and show her the new lights I affixed to my bike. I want to collect the keys to the first house we share. I want to take her for the first ride in the first car I'll buy. I want to cook her another batch of pancakes. I want our life together to truly begin. But that will never happen.
Let me use another, arguably even nerdier analogy. One of the fundamental concepts in quantum theory is the idea of the superposition. The idea says that for very small objects, we can never truly tell where they are at the same time as we can tell their momentum. The location of (for example) an electron orbiting a nucleus is defined by a 3D probability functions called a wavefunction. There is a certain chance it is in any given location, but nothing guaranteed. One of the weirder sides to this is that at any given time, the electron actually exists in all locations simultaneously. Only when its location is measured in some way does the wavefunction "collapse" and the actual location is set. The most famous thought experiment that stems from this is Shrödinger's Cat. I'll leave the details of the thought experiment to the reader, but the upshot is this: at one point, the cat is simultaneously dead and alive; only when the box is opened does the wavefunction collapse and the cat's nature become measurable.
Electra's wavefunction is collapsing. Even when her diagnosis was confirmed, I guess I instinctively felt there was a tiny sliver of hope. Technically, there is a chance, infinitesimal though it is, that an electron bound to a carbon atom in your thumb is actually located on the surface of the moon. It's unlikely but the possibility exists. Similarly, although I knew Electra's fate, a part of me clung to that most minute of hopes. That some twist would yet emerge. That as long as she was awake and conscious that it could still turn around. A zero-day cure could be found, or a dramatic reversal of fortune caused by a resurgent immune system. But moreover, just the vague, undirected hope that this wasn't it. That we'd have more time. And now, before my eyes, I can see that wavefunction collapse. There is nothing left but waiting for her breath to stop and her heart to be still. The essence of who she is has gone.
Many of the people who have written me to express support and condolences, (and I thank you all for doing so), have stated how they cannot even beging to understand how I feel. The reality is this: I can't either. I am empty and lonely and hopeless in a way I've never experienced. I feel broken and desolate. But beyond that, I just don't know. I don't think I can put a label on it beyond feeling wrong. The notion of a world without Electra in it is inconceivable, like waking up one day to find out that one plus one equals three. And yet here we are; for the first time, that world truly is upon us. I don't know how to react to a world so familiar, yet so completely alien. I'm not ready for this. I thought the asymptote would stretch on forever.
Electra & AML: The Decline
(See all posts related to Electra's ongoing treatment)
It's amazing how much of a difference two days can make. I left Birmingham on Sunday afternoon and came back Tuesday late at night. Things have been getting worse for some time in a slow slide towards the end, a trend I expected to continue. What I did not expect, or at least didn't fully appreciate, was how rapidly and dramatically the decline truly would be. We'd been warned that when the end started to approach and things were going form bad to worse, that a quick slide was to be expected. When things started to go really bad, they would do so quickly. So I should've known. But I guess I still felt that two days would show a fairly steady trend; I expected no real improvement, but neither did I expect a visible decline.
When I left, Electra was in pretty bad shape. She would sleep most of the days, and be pretty groggy while awake. Her energy levels, so heavily depleted already had dropped to minimal levels, meaning that the smallest of movements or exertions would drain her completely. Indeed, on a few occasions, the 10 metres between the bathroom and bedroom so thoroughly deprived her of vitality that she would collapse to the floor and need to rest there for 15 minutes before completing the journey. So she was very weary, very drained.
When I returned on Tuesday, the situation was markedly worse, as improbable as I felt that to be when I'd left. The short trip to the bathroom had become too strenuous in every occasion; she simply could not make it in one go even once. She was continuing to sleep more and more, and the night I arrived, she vomited three times, a frequency not seen for months. Furthermore, her sleep was more disturbed than I'd witnessed before; crying out, mumbling, twitching and trouble breathing dominated. She'd acquired a rattly, hollow sound to her breathing at times. The situation was as dire as I've witnessed, as bad as it was at the peak of treatment, but with no hope of a recovery this time.
Today was every bit as bad. Electra has not truly been awake all day. She had a few minutes of lucidity in the morning when the nurses visited (their visits are now daily rather than weekly). But other than that, she has slept fitfully, talking and crying out in nonsensical gibberish, sometimes trying to sit up or open her eyes, but much more often floating in a haze of medication, a failing body and eternal fatigue. Some of this may be due to the extra anti-anxiety pill she took this morning (to facilitate a procedure by the nurses). But more likely, it is yet another sign of her accelerating and inexorable decline. The end really is coming, and I think it's coming soon.
For my side of things, this has been a bit of a breaking point. Throughout these ordeals, I have continued to work, largely remotely (from Birmingham), though with frequent visits to my office. Lately, as Electra's condition has worsened, this has become harder and harder. My stress has gone up and my focus down. I lash out when I shouldn't and fail to stay on task when I should. As it is clear we are in the waning days of Electra's life, I have elected to take medical leave for the stress, and will likely continue to do so, through medical leave and vacation time-until the end of Electra's life and for some time after. I will spend my time here in Birmingham with her.
I should note again that my employer, Ericsson, truly has been exemplary throughout this 15-month trudge. From letting me work remotely, to allowing me to take annual leave with no notice, and always making sure that supporting me is their goal, they have made this whole thing much easier than it could have been. I discussed taking medical leave with my team lead on Monday, and he continued to reinforce the point that they would support whatever course of action I felt was best. At the time, I thought it would be to continue working for some time. This has turned out to be untenable and I don't want to claim to be working when I am in fact so far at the end of my tether that I am ultimately producing nothing; for this reason, I think stress-related medical leave is the right choice. It's great to have an employer who's got my back enough to support that choice.
Aside from the scariness and unpleasantness of Electra's current state, this sharp drop in quality of life further emphasises that rapidity with which the end is approaching. For the first time, I've managed to get a rough time estimate out of one of her medical care team. One of the hospice workers, visiting today, confirmed that my estimate of a week or two left is probably about right. A week or two. It's hard to see that written like that, and hard to imagine that in the next fortnight my world will become so much smaller.
It's amazing how much of a difference two days can make. I left Birmingham on Sunday afternoon and came back Tuesday late at night. Things have been getting worse for some time in a slow slide towards the end, a trend I expected to continue. What I did not expect, or at least didn't fully appreciate, was how rapidly and dramatically the decline truly would be. We'd been warned that when the end started to approach and things were going form bad to worse, that a quick slide was to be expected. When things started to go really bad, they would do so quickly. So I should've known. But I guess I still felt that two days would show a fairly steady trend; I expected no real improvement, but neither did I expect a visible decline.
When I left, Electra was in pretty bad shape. She would sleep most of the days, and be pretty groggy while awake. Her energy levels, so heavily depleted already had dropped to minimal levels, meaning that the smallest of movements or exertions would drain her completely. Indeed, on a few occasions, the 10 metres between the bathroom and bedroom so thoroughly deprived her of vitality that she would collapse to the floor and need to rest there for 15 minutes before completing the journey. So she was very weary, very drained.
When I returned on Tuesday, the situation was markedly worse, as improbable as I felt that to be when I'd left. The short trip to the bathroom had become too strenuous in every occasion; she simply could not make it in one go even once. She was continuing to sleep more and more, and the night I arrived, she vomited three times, a frequency not seen for months. Furthermore, her sleep was more disturbed than I'd witnessed before; crying out, mumbling, twitching and trouble breathing dominated. She'd acquired a rattly, hollow sound to her breathing at times. The situation was as dire as I've witnessed, as bad as it was at the peak of treatment, but with no hope of a recovery this time.
Today was every bit as bad. Electra has not truly been awake all day. She had a few minutes of lucidity in the morning when the nurses visited (their visits are now daily rather than weekly). But other than that, she has slept fitfully, talking and crying out in nonsensical gibberish, sometimes trying to sit up or open her eyes, but much more often floating in a haze of medication, a failing body and eternal fatigue. Some of this may be due to the extra anti-anxiety pill she took this morning (to facilitate a procedure by the nurses). But more likely, it is yet another sign of her accelerating and inexorable decline. The end really is coming, and I think it's coming soon.
For my side of things, this has been a bit of a breaking point. Throughout these ordeals, I have continued to work, largely remotely (from Birmingham), though with frequent visits to my office. Lately, as Electra's condition has worsened, this has become harder and harder. My stress has gone up and my focus down. I lash out when I shouldn't and fail to stay on task when I should. As it is clear we are in the waning days of Electra's life, I have elected to take medical leave for the stress, and will likely continue to do so, through medical leave and vacation time-until the end of Electra's life and for some time after. I will spend my time here in Birmingham with her.
I should note again that my employer, Ericsson, truly has been exemplary throughout this 15-month trudge. From letting me work remotely, to allowing me to take annual leave with no notice, and always making sure that supporting me is their goal, they have made this whole thing much easier than it could have been. I discussed taking medical leave with my team lead on Monday, and he continued to reinforce the point that they would support whatever course of action I felt was best. At the time, I thought it would be to continue working for some time. This has turned out to be untenable and I don't want to claim to be working when I am in fact so far at the end of my tether that I am ultimately producing nothing; for this reason, I think stress-related medical leave is the right choice. It's great to have an employer who's got my back enough to support that choice.
Aside from the scariness and unpleasantness of Electra's current state, this sharp drop in quality of life further emphasises that rapidity with which the end is approaching. For the first time, I've managed to get a rough time estimate out of one of her medical care team. One of the hospice workers, visiting today, confirmed that my estimate of a week or two left is probably about right. A week or two. It's hard to see that written like that, and hard to imagine that in the next fortnight my world will become so much smaller.
Thursday, March 08, 2012
Electra & AML: The End Slowly Approaches
I think we are in the final days. This is weird to think, a scary and horrible realisation, and in many ways made worse by the fact that I've thought so before. When you know the end is coming, when fates have been sealed and results determined, there is a tendency to interpret signs as significant and portentous, whether they are or not. In this instance, though, it's hard to see any other conclusion beyond the idea that we are in the final days of this journey.
Even though the timeframe of Electra's decine couldn't be accurately forecast, the overall pattern was better understood. From when she was released from the hospital, we were to expect a gradual but consistent slide into greater and greater fatigue and lethargy. Eventually, sleep would overtake waking hours completely and Electra-though still alive-would be wandering in the purgatory of a coma, forever travelling outside the borders of the land of the living, but not yet crossed over to death. After a few days, possibly a week, the true end would arrive. We were also told to expect an acceleration of this slide in the waning days of consciousness; when things took a turn for the worse, it was likely they would get worse quite quickly.
Over the past few weeks, there has been more of a roller coaster ride than I would have expected given the prognosis described above. There have been good days, and lengthy periods of time when Electra's state has markedly and noticeably improved. Specifically, about a week ago, she visited the hospital and insisted on an audit of the medications she was prescribed. These medications numbered a dozen or so, many taken several times a day. The upshot was that Electra was constantly taking pills-approximately 30-40 tablets per day, which-given that taking fluids made her queasy and required a break-meant she would finish her morning meds just in time to start taking the lunch-time ones. Coupled with the side effects of this many meds, her medical regime alone caused her nausea and fatigue and brought her quality of life down. So a simplification of the medication regime to four key meds was a serious boon.
Adding to this was the prescription of a meal-replacement shake. Electra had been surviving for weeks on a daily diet of a half-cup of skimmed milk and, if she was really hungry, a few small slices of apple. This is not a combination conducive to high energy levels. But the prescription of Complan, a meal replacement shake, meant she perked up and even managed to eat some real food as her appetitive was ever-so-slightly piqued.
The final piece to her re-energising puzzle was the visit of her brother Philip, probably the final person on her "must see" list. I think Philip (her bone marrow donor) has taken this harder than almost anyone else, and he and Electra are very close; the absence was causing them both strife. But Philip's second child was born a scant few weeks ago and he was almost immediately hit with severe tonsillitis, so a visit had to be postponed. But being able to spend a week together and say goodbye properly, really brought some colour back to Electra's life.
So for some time, Electra's condition, which had been characterised by constant fatigue and sickness, seemed to perk up a little bit. The last few days, however, feel to me like the start (or resumption perhaps) of the downward trend we all knew was coming.
Electra has slept quite a lot since being discharged from the hospital. Cancer is draining, the medications can exacerbate this and the result is the classic picture of someone unable to truly rouse themselves. Naps have been a constant feature for weeks. But over the past week, Electra's sleeping has become the dominant feature of her day. She would previously stir by 10AM or so; the past days have seen a 1PM wakeup and a 5PM one. Even the smallest tasks take effort almost beyond her reach. She has very little left.
Part of this is by choice. Electra has made the choice to forego future blood transfusions. She will continue to receive platelets (at the hospice rather than the hospital) to attempt to stem the tide of the haemorraging. But the blood transfusions, which provide red blood cells (the key factor in one's energy level) will no longer be administered, at her request. This was an informed choice; the benefits of the blood would decrease over time, giving less of a boost with each transfusion, without realising a corresponding drop in the time, hassle or stress associated with the process-each unit of blood takes at least two hours of hospital/hospice time on top of the waiting, admin, paperwork and so forth. It is a trying procedure and the effect it provided was declining. So she has elected to stop future blood transfusions. This will of course hasten the inevitable.
I have long been an advocate of choosing when and how to die. I think that modern medical science is one of our greatest and most admirable triumphs. But the focus has always been on extending life, giving more time at all costs. We strive for-and often achieve-quantity time while forgetting about quality time. Electra has chosen the latter. She would rather we have a small amount of good time rather than a lengthy, trying and painful ordeal. I support her choice and I think she's doing exactly the right thing. I ache to see her in agony, discomfort or so utterly devoid of energy and enthusiasm. She's said her goodbyes and seen those she loves. She's ready and when the inevitable comes, she will have lived a great life and lived on her terms and by her choices.
I just wish we could've pulled off the miraculous and garnered both quality and quantity. I don't want her to suffer as she has been, but seeing her death approaching is almost immeasurably draining. The selfish part of me just wants to carve out another week or two. I'm not ready to start missing her yet.
Sunday, February 26, 2012
Electra & AML: The Shells of Dreams
(See all posts related to Electra's ongoing treatment)
In one of my favourite movies of all time, the protagonist states that "Fear can keep you prisoner; hope can set you free". Throughout this ordeal, this basic precept is one to which I've tried desperately to adhere. We knew from the outset that this battle would be a protracted one, and without hope, it would be difficult to persevere. Cancer outcomes seem particularly affected by the patient's willingness to fight and their overall spirit, and the support structure surrounding the patient; to give up would be death and defeat and hope was the life raft to which we all clung. Even in the darkest days, we would cling to our hopes and dreams in an attempt to keep strong. But one of the worst aspects of this disease is the way it has, one by one, knocked down each dream we had.
First, it was the hope that the chemo would work on its own. Leukaemia was obviously serious, but we were assured time and again that the research had been excellent and the odds were much better than they'd been even five years ago. So we hoped chemo would kick this pernicious disease to the curb. That dream was dashed when Electra's genetic anomalies persisted. So, the total body irradiation and bone marrow transplant were scheduled, and our hopes were pinned on those. These were the nuclear option, and our dream was of complete remission and as speedy a recovery as possible. And for over six months, that's exactly what we had.
Then, the recurrence. Our dreams dashed again, we refocused, this time on the slim hope that the new chemo regime would cure her. Failing that, we wanted a period of calm, a window of health and well-being so that, if nothing else, we could at least travel one more time. See Rome or Bali, visit Montreal or New York State. We dreamed of a few good months together and the hope of a true cure. The cancer took that from us when the leukaemia came back almost immediately and Electra was officially terminal.
So the dream moves yet again. With the end now determined, we focused on the time leading up to it. Having been so miserable in the hospital, we wanted an easy couple of months for Electra. Peace, calm, a lack of pain and a comfortable transition at home. That's all we wanted. An easy an enjoyable end of days. But those hopes have been dashed.
Electra is largely pain-free, and that is a blessing. Although she experienced some pain early on as a result of a swollen vein in her leg, the pain management regimen they've got her on has that generally under control. But comfort and a general sense of well-being have proven much more elusive. Her nausea has come back in force, this time in response to any strong smells or tastes, or any sudden movements. Her energy levels have dropped dramatically, and she sleeps the majority of the day, either in short naps or full-blown sleeps. When awake, she has little energy and though the wheelchair we've gotten to get her around town helps immensely, she's often too drained to do much.
More frighteningly, she's started to haemorrhage. Though the full extent isn't really known, her lack of platelets has meant that she bleeds and bruises easily. This started with bleeding gums and nosebleeds that wouldn't stop. It has since expanded to a bleed behind her left eye rendering that eye mostly blind. It also leaves small red dots on her skin and darker patches in random locations. Whereas the plan was for her to receive a platelet transfusion of one unit each week, she has had to go into the hospital three times in the past week, and has received two units each time. The dream of an at-home convalescence has become a reality of three or more hospital trips per week, sometimes lasting more than six hours.
I said in my last post that some of these symptoms-though not huge on their own-are harbingers of what to come. I'm more convinced of that than ever. Though we've never been able to predict how much time is left, I'm less confident now than I've ever been before. Electra has had time to recover from the busy week I discussed in my last post and yet remains weak and tired. She is bleeding and nauseous and often uncomfortable. Our final hope, the dream we so desperately grasped for seems as futile as all the rest. All we wanted in the end was a little more time and to see Electra comfortable and at ease. It seems cancer could not even grant us that. Fuck cancer.
In one of my favourite movies of all time, the protagonist states that "Fear can keep you prisoner; hope can set you free". Throughout this ordeal, this basic precept is one to which I've tried desperately to adhere. We knew from the outset that this battle would be a protracted one, and without hope, it would be difficult to persevere. Cancer outcomes seem particularly affected by the patient's willingness to fight and their overall spirit, and the support structure surrounding the patient; to give up would be death and defeat and hope was the life raft to which we all clung. Even in the darkest days, we would cling to our hopes and dreams in an attempt to keep strong. But one of the worst aspects of this disease is the way it has, one by one, knocked down each dream we had.
First, it was the hope that the chemo would work on its own. Leukaemia was obviously serious, but we were assured time and again that the research had been excellent and the odds were much better than they'd been even five years ago. So we hoped chemo would kick this pernicious disease to the curb. That dream was dashed when Electra's genetic anomalies persisted. So, the total body irradiation and bone marrow transplant were scheduled, and our hopes were pinned on those. These were the nuclear option, and our dream was of complete remission and as speedy a recovery as possible. And for over six months, that's exactly what we had.
Then, the recurrence. Our dreams dashed again, we refocused, this time on the slim hope that the new chemo regime would cure her. Failing that, we wanted a period of calm, a window of health and well-being so that, if nothing else, we could at least travel one more time. See Rome or Bali, visit Montreal or New York State. We dreamed of a few good months together and the hope of a true cure. The cancer took that from us when the leukaemia came back almost immediately and Electra was officially terminal.
So the dream moves yet again. With the end now determined, we focused on the time leading up to it. Having been so miserable in the hospital, we wanted an easy couple of months for Electra. Peace, calm, a lack of pain and a comfortable transition at home. That's all we wanted. An easy an enjoyable end of days. But those hopes have been dashed.
Electra is largely pain-free, and that is a blessing. Although she experienced some pain early on as a result of a swollen vein in her leg, the pain management regimen they've got her on has that generally under control. But comfort and a general sense of well-being have proven much more elusive. Her nausea has come back in force, this time in response to any strong smells or tastes, or any sudden movements. Her energy levels have dropped dramatically, and she sleeps the majority of the day, either in short naps or full-blown sleeps. When awake, she has little energy and though the wheelchair we've gotten to get her around town helps immensely, she's often too drained to do much.
More frighteningly, she's started to haemorrhage. Though the full extent isn't really known, her lack of platelets has meant that she bleeds and bruises easily. This started with bleeding gums and nosebleeds that wouldn't stop. It has since expanded to a bleed behind her left eye rendering that eye mostly blind. It also leaves small red dots on her skin and darker patches in random locations. Whereas the plan was for her to receive a platelet transfusion of one unit each week, she has had to go into the hospital three times in the past week, and has received two units each time. The dream of an at-home convalescence has become a reality of three or more hospital trips per week, sometimes lasting more than six hours.
I said in my last post that some of these symptoms-though not huge on their own-are harbingers of what to come. I'm more convinced of that than ever. Though we've never been able to predict how much time is left, I'm less confident now than I've ever been before. Electra has had time to recover from the busy week I discussed in my last post and yet remains weak and tired. She is bleeding and nauseous and often uncomfortable. Our final hope, the dream we so desperately grasped for seems as futile as all the rest. All we wanted in the end was a little more time and to see Electra comfortable and at ease. It seems cancer could not even grant us that. Fuck cancer.
Sunday, February 19, 2012
Electra & AML: Ups and Downs
(See all posts related to Electra's ongoing treatment)
Apologies for the gap in posting. As you can no doubt imagine, the news of the recurrence and the prognosis was a bit of shock, even though we knew Electra's odds weren't great going into this round of chemo. Although I think we're handling it well overall, I know that I've found it very hard to concentrate on much of anything of any substance and blogging falls into that domain and has thus been neglected. Allow me to bring everyone up to date.
We are now more than three weeks post-diagnosis. It's been a tumultuous and emotional ride. Hearing you are going to die (or that a loved one is) is one of those things you're never really prepared for and to which the reaction is anything but predictable. From Electra's initial re-diagnosis in December, we knew the odds against success were pretty grim (5-10%). But it is something for which one really cannot prepare oneself, as much as we tried. When there is even a glimmer of hope, that hope is a raft in an icy storm and a light on the horizon and you hold onto it with everything you've got. So while we were realistic about the odds, we also clung to the dream that she would beat them. Beyond that, we'd hoped for more time. The chance to travel a bit, the chance to enjoy a little more life. It's clear now that this won't happen and that was more shocking than anything else.
In the intervening time, we have kept busy. Aside from the hospital, hospice and GP visits to ensure that Electra's care is handled as well as possible and that she's kept comfortable and pain-free, there has been a steady stream of well-wishers and visitors. When the diagnosis was given, Electra decided to host a small gathering to celebrate her life and say farewell to a few close friends and family. It was small and intimate, but an excellent idea. By framing it as a celebration of life, Electra was able to ensure that the mood was as upbeat as possible, that people could say goodbye without feeling overwhelmed and that what will be the final farewell for many brought with it some positive thoughts and memories.
In addition to this party, Electra's cousin and aunt have been visiting for ten days or so, and my parents for the last week. This was ultimately a bit of a mixed bag. While the visits were low-key and often involved a lot of sitting and chatting, it dramatically increased the number of people who were present on a daily basis, and this brought a degree of stress into Electra's days that should possibly have been avoided. She was a trooper for all of it though, so even when the stress was high, she persevered. We got her a wheelchair, which has allowed her to get out of the house sometimes, as she would often have the energy to be out but not to walk there and back. Through dinners out and days in, she always did her best to engage with all of us. This was tough at times, however, especially so later in this past week.
Which brings me to the question at the fore of everyone's mind: how is she doing. Unfortunately, the answer is "not great at the moment". Electra got a platelet transfusion on Monday and three units of blood on Tuesday, and the effect was immense. Her colour got better, bumps and bruises and cuts healed and her energy and spirits jumped dramatically. Though she would still tire readily, she really didn't look terribly sick. As the week progressed, however, that got steadily worse in pretty much every metric. When I left on Sunday, she had been asleep most of the day, had little to no energy when awake, was pale and sallow, was getting spots and bruises as a result of her dwindling platelet count, and was bleeding from her gums (again because of the platelets). In short, she seemed as sick as she really is.
This is scary to me and really drives home the reality of the situation in a way that a logical and cogent understanding cannot. Even for someone as bound to scientific fact as myself, this felt more surreal than real at times and seeing Electra moderately hale and hearty made it easy to put aside the reality of the situation. But this weekend changed that. Although the spots on her skin are minor, they herald the somber reality of what to come. Though seemingly innocuous on their own, they are the harbingers of her inevitable future.
I don't know whether Electra's deteriorated condition is a result of an intense week of friends, family, food and chat, or whether this is the first major step on the inevitable path to the end. She will receive platelets on Monday and will have her blood tested, possibly (likely in my view) triggering a transfusion of blood to boost her haemoglobin count, and thus her energy. And this will be very telling, I think. With a couple good days of rest and a transfusion of blood and platelets, hopefully she will pick up and show us that the past week was one of over-exertion. But I'm worried that the end of days is approaching; I worry that the energy loss and other symptoms are all that is left to expect and that the efficacy of these measures will ever dwindle going forward.
I worry I am losing my love. And I've never been more powerless.
Apologies for the gap in posting. As you can no doubt imagine, the news of the recurrence and the prognosis was a bit of shock, even though we knew Electra's odds weren't great going into this round of chemo. Although I think we're handling it well overall, I know that I've found it very hard to concentrate on much of anything of any substance and blogging falls into that domain and has thus been neglected. Allow me to bring everyone up to date.
We are now more than three weeks post-diagnosis. It's been a tumultuous and emotional ride. Hearing you are going to die (or that a loved one is) is one of those things you're never really prepared for and to which the reaction is anything but predictable. From Electra's initial re-diagnosis in December, we knew the odds against success were pretty grim (5-10%). But it is something for which one really cannot prepare oneself, as much as we tried. When there is even a glimmer of hope, that hope is a raft in an icy storm and a light on the horizon and you hold onto it with everything you've got. So while we were realistic about the odds, we also clung to the dream that she would beat them. Beyond that, we'd hoped for more time. The chance to travel a bit, the chance to enjoy a little more life. It's clear now that this won't happen and that was more shocking than anything else.
In the intervening time, we have kept busy. Aside from the hospital, hospice and GP visits to ensure that Electra's care is handled as well as possible and that she's kept comfortable and pain-free, there has been a steady stream of well-wishers and visitors. When the diagnosis was given, Electra decided to host a small gathering to celebrate her life and say farewell to a few close friends and family. It was small and intimate, but an excellent idea. By framing it as a celebration of life, Electra was able to ensure that the mood was as upbeat as possible, that people could say goodbye without feeling overwhelmed and that what will be the final farewell for many brought with it some positive thoughts and memories.
In addition to this party, Electra's cousin and aunt have been visiting for ten days or so, and my parents for the last week. This was ultimately a bit of a mixed bag. While the visits were low-key and often involved a lot of sitting and chatting, it dramatically increased the number of people who were present on a daily basis, and this brought a degree of stress into Electra's days that should possibly have been avoided. She was a trooper for all of it though, so even when the stress was high, she persevered. We got her a wheelchair, which has allowed her to get out of the house sometimes, as she would often have the energy to be out but not to walk there and back. Through dinners out and days in, she always did her best to engage with all of us. This was tough at times, however, especially so later in this past week.
Which brings me to the question at the fore of everyone's mind: how is she doing. Unfortunately, the answer is "not great at the moment". Electra got a platelet transfusion on Monday and three units of blood on Tuesday, and the effect was immense. Her colour got better, bumps and bruises and cuts healed and her energy and spirits jumped dramatically. Though she would still tire readily, she really didn't look terribly sick. As the week progressed, however, that got steadily worse in pretty much every metric. When I left on Sunday, she had been asleep most of the day, had little to no energy when awake, was pale and sallow, was getting spots and bruises as a result of her dwindling platelet count, and was bleeding from her gums (again because of the platelets). In short, she seemed as sick as she really is.
This is scary to me and really drives home the reality of the situation in a way that a logical and cogent understanding cannot. Even for someone as bound to scientific fact as myself, this felt more surreal than real at times and seeing Electra moderately hale and hearty made it easy to put aside the reality of the situation. But this weekend changed that. Although the spots on her skin are minor, they herald the somber reality of what to come. Though seemingly innocuous on their own, they are the harbingers of her inevitable future.
I don't know whether Electra's deteriorated condition is a result of an intense week of friends, family, food and chat, or whether this is the first major step on the inevitable path to the end. She will receive platelets on Monday and will have her blood tested, possibly (likely in my view) triggering a transfusion of blood to boost her haemoglobin count, and thus her energy. And this will be very telling, I think. With a couple good days of rest and a transfusion of blood and platelets, hopefully she will pick up and show us that the past week was one of over-exertion. But I'm worried that the end of days is approaching; I worry that the energy loss and other symptoms are all that is left to expect and that the efficacy of these measures will ever dwindle going forward.
I worry I am losing my love. And I've never been more powerless.
Thursday, February 02, 2012
Electra & AML: The News We Dreaded
(See all posts related to Electra's ongoing treatment)
I am afraid I must be the bearer of bad news in this post. Although the risks and potential outcomes of this disease have always been scary, and the recent prognosis has been especially dire, we always held out hope that we could beat the odds. Sadly, this is no longer the case.
Electra had a bone marrow biopsy this past Monday. This was to check on progress and while this would have occurred anyway in the course of treatment, it was especially important in this instance because Electra wasn't seeing the recovery speed that would be hoped for. At three weeks post-chemo, one would hope to see her immune system coming back in force, an end to the daily nausea and fatigue and her blood levels returning to normal. While the growth hormone (GCSF) had boosted her levels, they had fallen again. So the biopsy was ordered and was performed on Monday.
In a bone marrow biopsy, there are two types of samples: the aspirate and the trephine samples. The aspirate is the liquid goop inside the pelvic bone; the trephine is an actual cross-section of bone. Getting enough aspirate for a definitive sample is often difficult for patients who recently undertook chemotherapy, which is why the trephine is taken as well; however, the trephine sample takes a week to analyse, compared to a day or so for the aspirate. In Electra's case, they were able to get enough aspirate and a long section extracted from the bone which was smeared on a slide for further analysis. Between this smear and the aspirate, a definitive diagnosis was reached in a day, so we knew by Tuesday afternoon.
The diagnosis wasn't good. The sample was full of leukaemia cells; the cancer was very much still present. The FLAG chemo and DLI, for all its intensity, had failed to eradicate the disease. Although we haven't gotten the cytogenetics back, this indicates that the bone marrow tissue is Electra's, and that it would ultimately dominate the cellular growth. The chemo hadn't worked.
Those who have been reading my blog over the past weeks and months know what this truly means. This was our last chance. This was the only remaining option; our hail mary pass to try and beat this thing for once and for all. So now, there's nothing left to try. All the options are exhausted, all the hope dissolved. All that is left to Electra now is palliative care. This is the medical term for "waiting to die". We don't know how long this will be: it could be a few weeks or a few months, but the outcome is no longer uncertain.
At least, though, Electra has been able to leave the hospital. Although she is still neutrapenic and thus at risk of infection, there is no longer really much to be gained by maintaining a hospital residence. She has little enough time left that anything they could do would make only a small difference and would guarantee she didn't enjoy the time. Instead, we will try to live as much as we can for however long we have left. We will eat, live, love and try to enjoy everything we can until the inevitable end arrives (not only Electra and I, but her parents as well, both of whom are here in Birmingham). The other small victory is that the end will arrive largely pain-free and in relative comfort and what pain there is can be treated with pain killers. Electra will simply become more and more sleepy until one day she will painlessly slip into a coma. From there, we will have only a couple of days to say our last goodbyes and make our last peace.
I have to be honest: I don't know what to write here. I've been asked countless times over the course of this ordeal how I felt, and this hasn't exactly abated with the realisation that Electra, the girl I love so deeply, the most important part of my life for over three years, is going to die. And if I am at all honest in response, I have to admit that I don't know how I feel. How can I? I mean, I can spin it out for people, talk about how unfair it all is, how gutted and shocked I am, etc. But the reality? There is so much bouncing around in my head right now that I can't really nail down my feelings, and if I could, I don't know that I could put it into words.
To start with, this isn't really unexpected, but neither was it predicted. Leukaemia isn't as unbeatable as it was a few years ago, but neither is it a walk in the park; moreover, we've known since December that her odds this time around were highly unfavourable. So we've had time to prepare, both practically and emotionally. But whenever there is any hope, any chance that a cure might be attained, you hold onto that hope, at least to some extent. You have to, because to give up is suicide. But now that ever-faint glimmer has finally flickered to gloom. So I do feel defeated.
But of course, there's more than that. Some of it obvious. I regret where I didn't treat Electra as well as I should have. I regret the time we spent apart and that we never managed to live together. I regret that we never travelled to the places we dreamed of, that we never got to adopt our puppies (Gaius and Caprica) nor our kittens (Shockley and Bardeen). I regret that I never saw her parents' summer home that provided so many great memories for Electra and that she never got to introduce me to her favourite Montreal haunts and restaurants.
And I guess that's what strikes me the most of this. The empty spot in my future, the blind patch in my dreams. I lament what we never did, more than what we did wrong, for it is missed and unfulfilled potential.
But beyond that, I don't know how to feel. It may be that I'm avoiding my emotions or that I lack the facilities to really grasp them. It may be that this is just too big to take in all at once. I bury myself in the facts and numbers, in the prognostications and planning. And I've realised that this is my way of avoidance. Paradoxically, by focusing on the reality of the situation and accepting what is to come, it may be that I'm avoiding actually internalising it. All I know is that a huge part of my life is about to go missing and I can't honestly say how I will feel when that happens. And that's a little scary.
Saturday, January 28, 2012
Electra & AML: A Bad Week
(See all posts related to Electra's ongoing treatment)
NOTE: This blog post was written over the course of several days in which I've been both lazy and unfocused, so some things have changed slightly over the course of that time. I'll try to be coherent but make no guarantees.
I will endeavour to post more in (and more regularly) in the coming weeks, but I'm finding it hard to concentrate on much these days. Focus, often elusive for me seems to have left me entirely. I have several more thoughts that build off this post, though, so I will try.
I've spent most of last week and the start of this one in Birmingham, and while I'm glad to have been there to lend some comfort, it was not an easy week. To be blunt, things are not going very well. Electra had a few good days while I was there but many more very bad ones.
At this stage of treatment (and for the near future), the biggest risk to Electra is an infection. Though there are other things to worry about (recurrence of the cancer and GVHD), infection is the primary concern right now. With her immune system depleted by the chemo, her body lacks the ability to fight off disease, so even a simple cough or cold can be deadly. This is why she is in a solo/isolation room and why certain precautions are observed, specifically relating to food, visitors, etc. However, the possibility of infection can never be entirely eliminated, and that reality was one that has reared its ugly head.
Starting about ten days ago, Electra started spiking a fever. The normal temperature for a human being is 36.6˚C. The hospital considers it to be a fever worth worrying about at 38˚. Electra peaked at slightly over 40˚. She then had a fever every day until yesterday. On top of this, she was in constant discomfort, generally in and out of sleep (but mostly asleep, albeit fitfully), was nauseous and vomiting, weak and tired and not infrequently in pain. In short, she was unwell in almost every way possible.
There are several implications of this, none of them good. At this stage in recovery, an infection is the most dangerous thing (as I said above). So there is a very real risk that something small and benign (to an average, healthy person) can be hugely damaging or even fatal. But more than this, it indicates that her immune system isn't rebounding; this is backed up by her continuing low white cell count. To try and ameliorate the situation, she was put back on GCSF, the growth hormone which can spur the development of more white cells. This, however, will only work if there are a few already beginning to develop (i.e. her bone marrow is at least beginning to return). In the absence of any early white cells, the GCSF will do exactly nothing at all.
The good news is that this appears to be working. Over the last few days, her white count has started to slowly tick upwards and her overall sense of healthiness has very slightly improved. She is still miles from healthy, but at least she is apparently edging in the right direction, albeit hesitantly. On Monday, she will go in for another bone marrow biopsy, which will determine whether there's been any regrowth, and if so whether it is her DNA or her brother's and whether it is free of leukaemia. Unfortunately, the odds of purely healthy regrowth is slim, but we will hope for the best and I will post about that another day. One fight at a time.
The most poignant part of this for all me was that watching this unfold, sitting by her bed for hours at a time while she slept or struggled to rouse herself and keep even the smallest amount of food and water down, is the sense of reality it drives home. I'm a numbers guy; I know what the odds are here (not good) and I know what the probable outcome is. I understand what we do to try and improve those numbers. But numbers are dispassionate and clinical. This isn't. This is real.
Electra has obviously been visible in dire straights before, and I've written about that. But this is different. Because the outcome is so daunting now, the pain of seeing her in such a state is compounded by the terror that this is the first step on a dark and empty path. Put simply, this is the first time it seemed like she really might die. It's the first time that I've been this scared.
On Electra's side, this has also made it the worst hospital stay thus far, from an emotional viewpoint. By dint of her earlier remission, there was a real sense that she was somewhat in the clear (as much so as is ever possible with cancer). There were very real concerns of course-how to reintegrate with work, how to get her strength back, how to find meaning in a normal life after months of focusing only on recovery. But these were all overshadowed by having wrested her life back from the pincers of cancer. To then be trust back into the thick of it, and to undergo such horrible health is a soul-destroying and emotionally crippling slap in the face. More than this, however, is the intent of pursuing this tougher treatment. When Electra elected to go through the tougher FLAG chemo, it was with the intent of trying to achieve a cure, and failing that, be in passable-enough health to be able to travel and relax while recuperating. Now it felt like that was being taken away and she might be destined to finish her days in discomfort and pain, confined to a hospital bed in Birmingham, 6000km from "home". I don't imagine I need to explain that this is the type of thing that can break someone, and while Electra has remained stronger than I would have, it has taken its toll.
Still, with her white cell count slowly ticking upwards, it is possible that we may have the faintest of glimmers at the end of this obsidian tunnel. We're not popping the champagne corks just yet, but it's fair to say that the appropriate fingers have been crossed. Now for the biopsy and its eventual results…
Tuesday, January 17, 2012
Electra & AML: The Hard Truth
(See all posts related to Electra's ongoing treatment)
I'm currently up in Birmingham again, having spent the last ten days or so down in London (facilitated by the arrival of Electra's mother, who has been able to keep her company in my absence). I'm going up in a rather anxious state, as yesterday and today have been somewhat tumultuous days in Electra's progress. Hit by an infection, Electra spent most of the day with a fever of 39 degrees and up, periodic low blood pressure and erratic pulse rates. Basically all the signs of a nasty infection; the exact type of thing you fear in an immune-depleted patient recovering from chemotherapy. The hard truth of the current situation is that, even when things seem good and stable, danger and fear are constant companions. And I think that I have perhaps skirted the hardest realities of the situation for too long.
WARNING: In this post, I am going to try and give the unvarnished truth. While things are by no means hopeless, some of the things I will discuss are pretty grim. This may be hard to read; it's certainly been hard to experience.
The biggest and harshest reality is the overall prognosis. I've said in past posts that leukaemia has been one of the big research wins in medical science over the past decades, and this is certainly true; the mortality rate is nowhere near as high as it used to be. However, Electra's case is now one of fairly early relapse. That changes things quite a bit. The relapse itself indicates that the cancer is quite tenacious and pernicious; while it was all but destroyed, it has come roaring back, obviously indicating a very tough instance of the cancer. This is further seen in her biopsy results, which showed a drop in the amount of donor DNA in her bone marrow: from a peak of 98% donor DNA, she dropped to about 58% by the middle of December when she was diagnosed. Her own bone marrow cells are fighting back and multiplying quickly, but multiplying the cancerous cells. In addition, the trisomy-8 genetic anomaly that was previously wiped out has returned, and has come with two new genetic anomalies involving transposed genes. The details of what this implies are beyond me, but the takeaway is this: her disease has mutated. If these conditions had existed initially, she would have been in a higher risk group. So the cancer is mutating into an even tougher form than it was initially.
The prognosis, therefore, is much, much less certain. The consultant with whom we spoke pegged it at a 5-10% chance of a cure, as I've discussed previously. What I'd not realised at the time (or perhaps blocked out) was that this is the last chance. If the cancer comes back again, there is nothing that can be done-no more chemo, no more transplants, nothing. 5-10% is her overall odds, and the time frames, though much less certain, aren't great either (12-24 months if we're being optimistic, which is tough to do given the recurrence happened after 6.5 months of remission last time). So, miracles can happen and 5-10% isn't nothing, but it's not exactly encouraging. Further, I've noticed that there's been a marked change in the way the doctors discuss longer outcomes. The focus is, in medical parlance, "extending life". We are trying to stay hopeful, but the deck is much more heavily stacked against Electra this time around.
On top of this, this stint in the hospital has proven much tougher for Electra, both emotionally and physically. Emotionally, I think it's made harder by the feeling that she was done with this. She was in remission, she was out of the hospital save for routine blood work as a day patient, etc. To be pulled back in is heart-rending, and not improved by the grim prognosis. So spirits have waned rather dramatically, escape attempts pondered, tears shed and depression has made a few appearances. Physically, the single biggest recurring phenomenon here has been one of utter discomfort. Electra simply cannot find any position-lying or sitting-that is comfortable. This obviously impedes sleep, makes it even more depressing, and just generally makes the experience more horrible that it would otherwise be. On top of this, she has struggled with a day of unexplained lower-back agony, sudden and severe nausea and vomiting, a loss of appetite and more. Plus, a nearly constant fever often lasting for days.
Today was especially bad. As I said earlier, Electra seems to have acquired a rather nasty infection and spent most of the day spiking a temperature in the low 40s. With antibiotics and paracetamol, they were able to bring it down to 39˚, and even as low as 38.2˚, but never out of the range they worry about. She's been put on the critical care nursing list, so has greater supervision and checks, but this is obviously yet another worrying development. And, of course, fevers of that range are often accompanied by delirium (not the good kind), fatigue, more nausea/vomiting and further discomfort. Between infections and the side effects of the chemo, she is being battered from every direction with massive intensity.
I don't want this post to scare people too much. Some of what Electra has been going through is expected, and some of it doesn't even indicate a particular problem per se. But the topic of mortality, especially of someone I love so deeply, is a difficult subject for me to broach, yet one I need to force myself to do, as it is a likely outcome based on what they know. And because it is hard for me to discuss, or even to think about, I fear I often soften or skirt around such issues, both internally and in this forum. And anyone reading this deserves the truth of the situation, no matter how scary it is.
We are not giving up hope, nor are we foregoing planning and dreaming for the future. It is important we do neither of these things. But it is equally important that we also accept, understand and prepare for the reality of the situation. And right now, that reality is full of ominous portent and very reasonable fear.
UPDATE: I wrote-but didn't post this-yesterday. I've just got back from the hospital now and although Electra is still struggling with periodic fevers and nausea, when I left her, her temperature seemed good, blood pressure was OK and her colour had come back (she was very pale and almost jaundiced looking when I arrived). We still don't know what infection she's got, but it's either healing, or least in a temporary respite.
Thursday, January 05, 2012
Electra & AML: Last Chemo Ever, For Better or Worse
(See all posts related to Electra's ongoing treatment)
So today was a rather significant milestone in this particular journey (well technically yesterday since I seem pathologically unable to get to bed at a decent hour ever). Today was Electra's last day of anti-AML chemotherapy. Ever.
The FLAG protocol that Electra is (was) on is a five-day course, and today was the fifth day. She is, of course, still in the hospital undergoing treatment, but that's more focused on the growth hormone to boost her red cell count, as well as the various prophylactic measures (antibiotics and anti-virals). The active application of chemotherapy is done. Further, this will be her last cycle in treatment of this disease. She will never have to undergo chemo again, barring (heaven forbid) the emergence of a different cancer later in life. Other than that, no more chemo. Buh-bye, thanks for the cancer-killing, no thanks for the immune system killing, the nausea, the hair loss and energy deprivation and the complete immunosuppression.
Of course, such a milestone as this is both relieving in one way, and foreboding in another. Allow me to explain. As this course of chemo comes to an end, the future forks into two distinct paths: curative or not. If she beats the odds and this course of treatment cures her, obviously she will no longer need the chemo. However, the ominous portend is that should this treatment fail, and the cancer relapse again, there are no real options. The chemo would never be successful again, no other realistic chemo options exist and her body would be hard-pressed to stand the strain. So the milestone is one we celebrate and observe, but with some trepidation.
The past year has been one of pain and suffering, fear and isolation, but love and hope as well; to preserve the latter, we are aiming for and hoping for a cure. But a frequent theme has been chemotherapy, and it is an amazing realisation to come to: she will not have to go through this again. Chemotherapy is very effective in many cancers, including blood and bone cancers. But it's a treatment so harsh and hard to deal with that it can often feel worse than the disease itself. So seeing it out the door is a cause for celebration, and is a victory in its own right.
I've said before (or meant to and forgot, possibly) that when dealing with a long trudge of a disease and treatment like this, that every victory, no matter how minor, matters. And this victory, though by no means the end of the struggle, is a key one. We needed the chemo, and it has kept her alive this long, but we never liked it. Chemotherapy is like cutting off your nose to spite your face; you poison yourself to get well.
So today, I saw, goodbye chemo. Don't let the door hit you on the ass on the way out. I appreciate everything you've done but hope I never see you again. And I'm reassured to know that, come what may, Electra certainly won't have to.
So today was a rather significant milestone in this particular journey (well technically yesterday since I seem pathologically unable to get to bed at a decent hour ever). Today was Electra's last day of anti-AML chemotherapy. Ever.
The FLAG protocol that Electra is (was) on is a five-day course, and today was the fifth day. She is, of course, still in the hospital undergoing treatment, but that's more focused on the growth hormone to boost her red cell count, as well as the various prophylactic measures (antibiotics and anti-virals). The active application of chemotherapy is done. Further, this will be her last cycle in treatment of this disease. She will never have to undergo chemo again, barring (heaven forbid) the emergence of a different cancer later in life. Other than that, no more chemo. Buh-bye, thanks for the cancer-killing, no thanks for the immune system killing, the nausea, the hair loss and energy deprivation and the complete immunosuppression.
Of course, such a milestone as this is both relieving in one way, and foreboding in another. Allow me to explain. As this course of chemo comes to an end, the future forks into two distinct paths: curative or not. If she beats the odds and this course of treatment cures her, obviously she will no longer need the chemo. However, the ominous portend is that should this treatment fail, and the cancer relapse again, there are no real options. The chemo would never be successful again, no other realistic chemo options exist and her body would be hard-pressed to stand the strain. So the milestone is one we celebrate and observe, but with some trepidation.
The past year has been one of pain and suffering, fear and isolation, but love and hope as well; to preserve the latter, we are aiming for and hoping for a cure. But a frequent theme has been chemotherapy, and it is an amazing realisation to come to: she will not have to go through this again. Chemotherapy is very effective in many cancers, including blood and bone cancers. But it's a treatment so harsh and hard to deal with that it can often feel worse than the disease itself. So seeing it out the door is a cause for celebration, and is a victory in its own right.
I've said before (or meant to and forgot, possibly) that when dealing with a long trudge of a disease and treatment like this, that every victory, no matter how minor, matters. And this victory, though by no means the end of the struggle, is a key one. We needed the chemo, and it has kept her alive this long, but we never liked it. Chemotherapy is like cutting off your nose to spite your face; you poison yourself to get well.
So today, I saw, goodbye chemo. Don't let the door hit you on the ass on the way out. I appreciate everything you've done but hope I never see you again. And I'm reassured to know that, come what may, Electra certainly won't have to.
Monday, January 02, 2012
Electra & AML: Our New Years Eve Tradition
(See all posts related to Electra's ongoing treatment)
So, remember my last post? Where I discussed why it was so important to us to celebrate New Years Eve in style and the plans we had to do so? Well, turns out that was optimistic thinking and our continuing streak of bad luck had other plans in mind. For the second year in a row, Electra started chemotherapy on New Years Eve. Evidently this is now our traditional celebration.
Basically, we'd been given the conditional all-clear to celebrate NYE as we'd planned, as Electra's counts were high enough. The condition, however, was the she come in for one final blood test on Wednesday, December 28th and that this test would be the final decision-maker as to whether she was healthy enough to stay out of the hospital until the new year. And sadly, she was not; specifically, her white cell count had dropped further, which put her at an increased risk of infection. If she were to contract an infection, the course of chemo she'd selected would be impossible: since the chemo would decimate her immune system, any contracted infection would potentially be fatal, and would definitely be a horrible experience. So they would be unable to start the chemo if she were to pick up so much as a nasty cold, and the risk of doing so was too high. So New Years Eve as planned was off, and it was into the hospital the next day.
Of course, that didn't happen either. The hospital was short on beds, so her admission date got bumped back to the 30th (despite the fact that I'd treated us to a nice "last night out" dinner on the 28th, harrumph). On the 30th, she was admitted back into the haematology ward, and the treatment began. First step was the insert a new Hickman (aka central) line, as hers had been removed when she'd been in remission. Then came the application of GCSF, a growth hormone which in patients such as herself spurs the production of more white cells, better enabling the body to handle the coming onslaught of the chemotherapy. This had the added benefit of taking her out of a neutrapenic state, meaning she felt healthier (for awhile) and the precautions for visiting are lessened.
On the 31st, the chemotherapy began. The course she's now on is called FLAG and has two chemotherapy drug: fludarabine and cytarabine. The latter is given over four hours, the longest single-drug duration she's had to deal with.
The upshot of all this, of course, was another New Years Eve in the hospital. As you can imagine, we were gutted to hear the news, as we'd really been looking forward to a nice, fun, relaxing cottage weekend with close friends, games, drink and sleep. Instead it was sterile environments, crappy hospital food, pain and intense medication.
Still, these sorts of things are, to a certain degree, what you make of them. So we did our best. I brought in a bottle of sparkling wine and a black forest cake and we rang in the new year (two hours early due to fatigue) with bubbly, cake, music and even a little in-room dancing. It might not be what we'd planned, but it was the best we were able to make of it.
And here's to 2012 being a better year, with a proper end-of-year celebration!
So, remember my last post? Where I discussed why it was so important to us to celebrate New Years Eve in style and the plans we had to do so? Well, turns out that was optimistic thinking and our continuing streak of bad luck had other plans in mind. For the second year in a row, Electra started chemotherapy on New Years Eve. Evidently this is now our traditional celebration.
Basically, we'd been given the conditional all-clear to celebrate NYE as we'd planned, as Electra's counts were high enough. The condition, however, was the she come in for one final blood test on Wednesday, December 28th and that this test would be the final decision-maker as to whether she was healthy enough to stay out of the hospital until the new year. And sadly, she was not; specifically, her white cell count had dropped further, which put her at an increased risk of infection. If she were to contract an infection, the course of chemo she'd selected would be impossible: since the chemo would decimate her immune system, any contracted infection would potentially be fatal, and would definitely be a horrible experience. So they would be unable to start the chemo if she were to pick up so much as a nasty cold, and the risk of doing so was too high. So New Years Eve as planned was off, and it was into the hospital the next day.
Of course, that didn't happen either. The hospital was short on beds, so her admission date got bumped back to the 30th (despite the fact that I'd treated us to a nice "last night out" dinner on the 28th, harrumph). On the 30th, she was admitted back into the haematology ward, and the treatment began. First step was the insert a new Hickman (aka central) line, as hers had been removed when she'd been in remission. Then came the application of GCSF, a growth hormone which in patients such as herself spurs the production of more white cells, better enabling the body to handle the coming onslaught of the chemotherapy. This had the added benefit of taking her out of a neutrapenic state, meaning she felt healthier (for awhile) and the precautions for visiting are lessened.
On the 31st, the chemotherapy began. The course she's now on is called FLAG and has two chemotherapy drug: fludarabine and cytarabine. The latter is given over four hours, the longest single-drug duration she's had to deal with.
The upshot of all this, of course, was another New Years Eve in the hospital. As you can imagine, we were gutted to hear the news, as we'd really been looking forward to a nice, fun, relaxing cottage weekend with close friends, games, drink and sleep. Instead it was sterile environments, crappy hospital food, pain and intense medication.
Still, these sorts of things are, to a certain degree, what you make of them. So we did our best. I brought in a bottle of sparkling wine and a black forest cake and we rang in the new year (two hours early due to fatigue) with bubbly, cake, music and even a little in-room dancing. It might not be what we'd planned, but it was the best we were able to make of it.
And here's to 2012 being a better year, with a proper end-of-year celebration!
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