(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.
Showing posts with label Electra. Show all posts
Showing posts with label Electra. Show all posts
Monday, April 16, 2012
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.
Thursday, March 15, 2012
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.
Saturday, May 14, 2011
Electra & AML: Spring update-residence
(See all posts related to Electra's ongoing treatment)
As Kevin Smith would say, I'm not going to bury the lead here: Electra was kicked out of her house for having cancer. I'll just pause a second and let that sink in.
There is some more to the story of course, though not as much as one might hope to have it make any kind of sense. For the last year and a half or so, Electra has been living in Stourport, in the west Midlands. She was in a three-person house, renting a single room. Since her AML came to light, her parents have been renting one of the other rooms. This was a convenient arrangement, as it allowed her family to stay close to her; at any given point, there would usually be someone (Electra's mother, father or brother, generally) in their room, and I would be in Electra's (as would she when she was out of the hospital).
Then, in early April, Electra's landlord Keith sent her an email saying that he would "have to give notice" on Electra's room. He claimed to be very sorry, but his mortgage terms were changing, and he needed to rent the entire house out (i.e. all three rooms) starting in May in order to make payments. He further asserted that he was having trouble renting the third room (the master bedroom) because of Electra's "condition"; people would hear about the situation, and then back out.
Now, I understand that the house is a business, and Keith needs to protect his investment. That's fair enough. I can also understand why a potential tenant might be a little uneasy about moving into a house with one tenant who's rarely there, whose boyfriend is around half the time (and working from home all day during that time) and whose parents were sporadically there. But, there are a couple problems with this. First, Electra never told Keith she was OK with his divulging of her very personal medical info. Secondly, considered objectively, there were two rooms that were rented and for the majority of the time, two people there; sometimes myself and her mother, sometimes Electra and her father, etc. But both rooms were paid for fully and both were occupied.
In any event, what's strange is that Keith's claim that he'd ben unable to rent the third room out rather falls apart when it's revealed that the other tenant was informed that someone would move into that selfsame room on May 1st. The tenant was informed of this BEFORE Electra was asked to vacate. So it seems it wasn't that hard after all!
Finally, while I understand that such a decision has to be looked at from a business standpoint, asking someone to move out during the brief window between rounds of chemotherapy is-at best-cold or-at worst-downright heartless. Had Keith come to explain the situation and seek a resolution towards it, no harm would've been done. Instead, he simply stated that he'd have to give notice, but was really sorry. I'm not sure why he was so keen to empty the house by the end of April (the other housemate was also asked to vacate, though that had been planned for sometime and it was merely the date that was set as such). It really seems suspicious to me that he was pushing everyone out all at once.
I feel it necessary to point out, as well, that Electra paid her rent every month, promptly. She kept the house clean, didn't smoke (the only housemate who actually adhered to that rule!) and was basically an ideal tenant in every way. So there's no history of problems to justify such a drastic action. I should also point out that it's definitely illegal to kick someone out for having cancer, and certainly to do so without sufficient notice (though no move-out date was dictated, and end-of-the-month timeframe was certainly alluded to). I haven't decided exactly how i'm planning to respond yet, but I have a range of ideas from "ignore it" to "polite but diffident" to "ruinous". I'll update once we decide.
The upshot of this is that Electra has now moved to Birmingham. She's looked at a place fairly close to the city centre and had planned to buy it anyway, for a number of reasons. But now, instead of having a place in Stourport where she could stay until move-in date (her flat is still under construction), she was forced to move in the midst of her treatment. Luckily, her parents were able to rent a flat in the same development as her new place, but asking someone to do this during the most stressful time of their life is just wrong.
So, yeah. We're in Birmingham now. It's better in many ways-a more interesting city, close to the city centre, more accessible to the hospital, easier for me to come visit, easier for her family to fly into, etc. Birmingham is-in basically every way-a better choice. I just wish that it had been a choice, rather than being foisted upon us by someone else without the decency and compassion to allow a basic amount of leeway for extenuating circumstances.
As Kevin Smith would say, I'm not going to bury the lead here: Electra was kicked out of her house for having cancer. I'll just pause a second and let that sink in.
There is some more to the story of course, though not as much as one might hope to have it make any kind of sense. For the last year and a half or so, Electra has been living in Stourport, in the west Midlands. She was in a three-person house, renting a single room. Since her AML came to light, her parents have been renting one of the other rooms. This was a convenient arrangement, as it allowed her family to stay close to her; at any given point, there would usually be someone (Electra's mother, father or brother, generally) in their room, and I would be in Electra's (as would she when she was out of the hospital).
Then, in early April, Electra's landlord Keith sent her an email saying that he would "have to give notice" on Electra's room. He claimed to be very sorry, but his mortgage terms were changing, and he needed to rent the entire house out (i.e. all three rooms) starting in May in order to make payments. He further asserted that he was having trouble renting the third room (the master bedroom) because of Electra's "condition"; people would hear about the situation, and then back out.
Now, I understand that the house is a business, and Keith needs to protect his investment. That's fair enough. I can also understand why a potential tenant might be a little uneasy about moving into a house with one tenant who's rarely there, whose boyfriend is around half the time (and working from home all day during that time) and whose parents were sporadically there. But, there are a couple problems with this. First, Electra never told Keith she was OK with his divulging of her very personal medical info. Secondly, considered objectively, there were two rooms that were rented and for the majority of the time, two people there; sometimes myself and her mother, sometimes Electra and her father, etc. But both rooms were paid for fully and both were occupied.
In any event, what's strange is that Keith's claim that he'd ben unable to rent the third room out rather falls apart when it's revealed that the other tenant was informed that someone would move into that selfsame room on May 1st. The tenant was informed of this BEFORE Electra was asked to vacate. So it seems it wasn't that hard after all!
Finally, while I understand that such a decision has to be looked at from a business standpoint, asking someone to move out during the brief window between rounds of chemotherapy is-at best-cold or-at worst-downright heartless. Had Keith come to explain the situation and seek a resolution towards it, no harm would've been done. Instead, he simply stated that he'd have to give notice, but was really sorry. I'm not sure why he was so keen to empty the house by the end of April (the other housemate was also asked to vacate, though that had been planned for sometime and it was merely the date that was set as such). It really seems suspicious to me that he was pushing everyone out all at once.
I feel it necessary to point out, as well, that Electra paid her rent every month, promptly. She kept the house clean, didn't smoke (the only housemate who actually adhered to that rule!) and was basically an ideal tenant in every way. So there's no history of problems to justify such a drastic action. I should also point out that it's definitely illegal to kick someone out for having cancer, and certainly to do so without sufficient notice (though no move-out date was dictated, and end-of-the-month timeframe was certainly alluded to). I haven't decided exactly how i'm planning to respond yet, but I have a range of ideas from "ignore it" to "polite but diffident" to "ruinous". I'll update once we decide.
The upshot of this is that Electra has now moved to Birmingham. She's looked at a place fairly close to the city centre and had planned to buy it anyway, for a number of reasons. But now, instead of having a place in Stourport where she could stay until move-in date (her flat is still under construction), she was forced to move in the midst of her treatment. Luckily, her parents were able to rent a flat in the same development as her new place, but asking someone to do this during the most stressful time of their life is just wrong.
So, yeah. We're in Birmingham now. It's better in many ways-a more interesting city, close to the city centre, more accessible to the hospital, easier for me to come visit, easier for her family to fly into, etc. Birmingham is-in basically every way-a better choice. I just wish that it had been a choice, rather than being foisted upon us by someone else without the decency and compassion to allow a basic amount of leeway for extenuating circumstances.
Sunday, March 20, 2011
Electra & AML: The Big D
(See all posts related to Electra's ongoing treatment)
So, there's a certain topic I have thus far avoided delving into: death. You'll have to excuse me if this post is a little less structured than some of the others, but that is a reflection of my thoughts, which are themselves a little unclear.
The fact of the matter is that this affliction is very serious. I know that's obvious, but I try to focus on the positives as much as possible: the advances in treatment, the high rate of success, the progress that Electra has made so far. But left untreated, AML has a mortality rate of 100%, often within months. The treatments have come a long way (a colleague of mine told me of her aunt who was treated several decades ago at a time when all they could do was a full blood transfusion every week or so). But they are not perfect, and as we've seen with recent revelations, things do not always go as smoothly as one would hope.
At the end of the day, the odds are good in this case, but nothing is guaranteed. Electra and I had "the death talk" the last time I was up, and she has been pushing me to make sure that I truly accept the possibility; that I genuinely take to heart that the worst possible outcome is possible, no matter how unlikely. She asked me whether I truly accepted that, and to be honest… I just don't know.
In a philosophical sense of the word, of course, we're all dying. Death really is the only thing we can be sure of in life, trite though that might be. And I engage in activities on a regular basis that dramatically increase my chances of dying (I'm thinking specifically of cycling in London, though I have no doubt there are others). So to be in denial about mortality seems foolish. But there's acknowledging that in a logical, academic way, and then there's really taking it to heart. And I don't know if I've done the latter.
I know I don't like to think about it, and definitely don't like to talk about it. Writing this blog post is a way of forcing myself to discuss the topic, and perhaps that's what it'll take to make me really internalise the concept. I guess I'm somewhat in a form of intentional denial; like the proverbial ostrich, perhaps if I refuse to acknowledge the possibility, that chance will disappear. Or perhaps it's simpler than that: I know what's possible, and know how easy it can be to get hung up on that idea and the accompanying fear, and am trying to avoid that. Because I am scared; whether I truly accept it or not, I do know the possible outcomes and there are some I don't want to consider. It may not be the healthiest way of dealing with it, though.
I'm generally a pretty good guy to have around in a crisis. When things go very wrong, I keep my cool, I assess the situation and I tackle things rationally and calmly. I freak out and get stressed by small to medium issues, but when the shit really hits the fan, I tend to become very focused. The upshot of this is that I tend to tackle logistics: what needs to be done, by when, what is the best way to achieve it, etc. My concern, I suppose, is that this coping mechanism may allow me to gloss over the bigger issues, the greater fears and perpetuate my denial, intentional or otherwise. And I'm clever enough to know that's not the healthiest approach in the long run. So I will try to accept it, whatever that means.
I am confident that Electra will pull through this ordeal with flying colours. Two years from now, I expect we will be stronger, healthier and happier than before, and will deal with the long-term ramifications of her treatment as they come (regular checkups, possible long-term medication requirements, etc.) I really do feel this is the case. But the shadow of that grim spectre does loom, quietly and forebodingly in the corner of my awareness, and it's time for me to accept his presence. I am confident that we will stave off his advances, but I should not (nay, cannot) ignore his existence.
So, there's a certain topic I have thus far avoided delving into: death. You'll have to excuse me if this post is a little less structured than some of the others, but that is a reflection of my thoughts, which are themselves a little unclear.
The fact of the matter is that this affliction is very serious. I know that's obvious, but I try to focus on the positives as much as possible: the advances in treatment, the high rate of success, the progress that Electra has made so far. But left untreated, AML has a mortality rate of 100%, often within months. The treatments have come a long way (a colleague of mine told me of her aunt who was treated several decades ago at a time when all they could do was a full blood transfusion every week or so). But they are not perfect, and as we've seen with recent revelations, things do not always go as smoothly as one would hope.
At the end of the day, the odds are good in this case, but nothing is guaranteed. Electra and I had "the death talk" the last time I was up, and she has been pushing me to make sure that I truly accept the possibility; that I genuinely take to heart that the worst possible outcome is possible, no matter how unlikely. She asked me whether I truly accepted that, and to be honest… I just don't know.
In a philosophical sense of the word, of course, we're all dying. Death really is the only thing we can be sure of in life, trite though that might be. And I engage in activities on a regular basis that dramatically increase my chances of dying (I'm thinking specifically of cycling in London, though I have no doubt there are others). So to be in denial about mortality seems foolish. But there's acknowledging that in a logical, academic way, and then there's really taking it to heart. And I don't know if I've done the latter.
I know I don't like to think about it, and definitely don't like to talk about it. Writing this blog post is a way of forcing myself to discuss the topic, and perhaps that's what it'll take to make me really internalise the concept. I guess I'm somewhat in a form of intentional denial; like the proverbial ostrich, perhaps if I refuse to acknowledge the possibility, that chance will disappear. Or perhaps it's simpler than that: I know what's possible, and know how easy it can be to get hung up on that idea and the accompanying fear, and am trying to avoid that. Because I am scared; whether I truly accept it or not, I do know the possible outcomes and there are some I don't want to consider. It may not be the healthiest way of dealing with it, though.
I'm generally a pretty good guy to have around in a crisis. When things go very wrong, I keep my cool, I assess the situation and I tackle things rationally and calmly. I freak out and get stressed by small to medium issues, but when the shit really hits the fan, I tend to become very focused. The upshot of this is that I tend to tackle logistics: what needs to be done, by when, what is the best way to achieve it, etc. My concern, I suppose, is that this coping mechanism may allow me to gloss over the bigger issues, the greater fears and perpetuate my denial, intentional or otherwise. And I'm clever enough to know that's not the healthiest approach in the long run. So I will try to accept it, whatever that means.
I am confident that Electra will pull through this ordeal with flying colours. Two years from now, I expect we will be stronger, healthier and happier than before, and will deal with the long-term ramifications of her treatment as they come (regular checkups, possible long-term medication requirements, etc.) I really do feel this is the case. But the shadow of that grim spectre does loom, quietly and forebodingly in the corner of my awareness, and it's time for me to accept his presence. I am confident that we will stave off his advances, but I should not (nay, cannot) ignore his existence.
Sunday, February 27, 2011
Electra & AML: Healthy Person's Guilt
(See all posts related to Electra's ongoing treatment)
You'll have to pardon a bit of self-indulgence at this point, as this is a bit of a philosophical wander. If you wish to skip this borderline narcissistic self-analysis, please feel free to jump to the update, below.
There is a concept in trauma psychology called survivor's guilt. In short (largely because I don't 100% know what I'm talking about and have no psych qualifications whatsoever), survivor's guilt is guilt experienced by those who survive (counter-intuitive, I know!). In the event of a major tragedy, let's say a plane crash, those who survive are often wracked with guilt, doubly so if loved ones perished in the tragedy. Typical thoughts are along the lines of "Why did they die and I survived?". Even though that person had no control over their fate, nor the fate of others, they feel guilty at the thought that their loved ones did nothing wrong, and often nothing different, yet perished in the incident.
Sometimes, I think the same thing applies in a case like this one. Electra is a very healthy person. She eats better than I do, exercises more than I do, avoids alcohol more fastidiously than I do and just generally maintains a better lifestyle in many ways than I. In other areas, we're on par: we don't smoke, do drugs, work with hazardous chemicals, etc. So by any measure, she should be healthier than I. Yet I sit in her hospital room alert, fairly well-rested and healthy, while she struggles with fatigue, nausea and other ailments, all down to her cancer, or the treatment thereof. For no rhyme or reason, she is sick and I am not.
I know life isn't fair, and I certainly don't expect that it should be so. I don't believe in fate, or god. I don't think there is a grand plan for the universe, and so the concept of a cosmic balance is anathema to my view of life. Yet as much as I may know this to be the case, I can find it hard to believe, to really internalise. And so I do feel guilty sometimes, and I suspect many others who love her feel likewise. The main way in which this guilt manifests itself is the feeling that I'm not doing enough. I call this "healthy person's guilt".
Now, before I go further, let me be crystal clear: this is absolutely not a fishing-for-compliments attempt. I know logically that I am helping and am not looking for reassurances of that fact. Further, for reasons I'm not entirely clear on, I don't take compliments terribly well, so I sincerely am not looking for any kind of ego boost from this, so please do not construe it as such.
Instead, the point I'm trying to make is that this feeling is endemic to these types of situations. Part of it is my own tendency to set lofty goals and then follow-through poorly. When Electra's condition came to light, I had visions of doing reams of research into the condition, the treatment, case studies and support groups, and intended to work towards becoming an AML expert, insofar as is possible for someone untrained in human biology and medical science. Instead, I've done none of this. I still provide care and support, the research side has gone nowhere.
Secondly, it can be tough for me when I'm down south. Now, I hesitate to write this, because I will be reading it to Electra shortly and I don't want her to think for a minute that she's imposing on me in any way or that I'm resentful of the time I spend here. I'm not at all, but Electra isn't exactly immune to needless feelings of guilt. Instead, my point is that while I know (again, in the logical part of my brain) that I need to spend time away for my own well-being and mental health, it can be hard to internalise and I do sometimes feel guilty when I am absent. This visit was preceded by a two-and-a-half-week block in the south, due to work commitments and a doctor's appointment of my own which I couldn't easily reschedule. But 18 days is too long and I won't be away for such an extended period again. I have also been late in arriving the past two days, and have forgotten to bring certain items (books etc.) with me, something else for which I feel guilty.
In the end, this is something I need to work through, and I am. It is hard for me to be away, but it's also re-energising. And I do know that I'm helping, even if that is just to be here, cut her hair, hold her hand and sneak her some chips. A patient's mental well-being is vital to recovery and I know that I am aiding in this way, to some degree. So the important thing to scope out is where I am right and can/should be doing more (i.e. arriving on time for my visits) and where I'm being irrational and self-immolating. In the latter instance, I need to let my logical brain rule more and make peace with the fact that while I cannot wave a magic wand and cure Electra, that I am doing that which is in my power to do in order to help. I just wish I felt like I was doing enough.
UPDATE
So, a general update on progress. Electra is now well and truly in the neutrapenic phase of her second cycle. She finished the chemo a week ago (Saturday the 19th to be specific), and her neutrophils dropped to zero mid-week. She was allowed a brief respite out of the hospital from Monday through Thursday, and has been back in since Thursday morning.
This cycle has been a bit of a mixed bag. The treatment itself was more traumatic (in cycle one, she felt relatively few ill-effects during the first week of the actual application of the chemo, this time around she was weak and nauseous frequently). However, the neutrapenic recovery period has been more varied. In the first cycle, she was walloped pretty hard. I wasn't present but was in frequent touch and I know how tough it truly was for her. Fatigue was constant, nausea frequent and infections common. This time around has been much better. Her energy levels are often OK and her appetite has been pretty good overall. She's been able to be more alert and enthusiastic, both in person and on the phone. However, there are still some serious down points. She is frequented by bouts of discomfort and a general unwell feeling. Eating can often be draining, and she's still not sleeping perfectly. Though she's avoided major infections, she's spiked fevers from time-to-time and has been sweaty or clammy on occasion. But overall, it does give confidence that she can react well to the treatment. Whereas the last neutrapenic phase was an all-out thrashing, this one has played out more like an even-handed battle.
She should be coming out of the neautrapenic phase in a week or so and will hopefully get the following week out of the hospital. I'll be returning to London on Tuesday with the intent of coming up as soon as she's out so we can spend some time together in an environment that's more hospitable (and less hospital heh heh heh).
And I really will try to post more, I promise.
You'll have to pardon a bit of self-indulgence at this point, as this is a bit of a philosophical wander. If you wish to skip this borderline narcissistic self-analysis, please feel free to jump to the update, below.
There is a concept in trauma psychology called survivor's guilt. In short (largely because I don't 100% know what I'm talking about and have no psych qualifications whatsoever), survivor's guilt is guilt experienced by those who survive (counter-intuitive, I know!). In the event of a major tragedy, let's say a plane crash, those who survive are often wracked with guilt, doubly so if loved ones perished in the tragedy. Typical thoughts are along the lines of "Why did they die and I survived?". Even though that person had no control over their fate, nor the fate of others, they feel guilty at the thought that their loved ones did nothing wrong, and often nothing different, yet perished in the incident.
Sometimes, I think the same thing applies in a case like this one. Electra is a very healthy person. She eats better than I do, exercises more than I do, avoids alcohol more fastidiously than I do and just generally maintains a better lifestyle in many ways than I. In other areas, we're on par: we don't smoke, do drugs, work with hazardous chemicals, etc. So by any measure, she should be healthier than I. Yet I sit in her hospital room alert, fairly well-rested and healthy, while she struggles with fatigue, nausea and other ailments, all down to her cancer, or the treatment thereof. For no rhyme or reason, she is sick and I am not.
I know life isn't fair, and I certainly don't expect that it should be so. I don't believe in fate, or god. I don't think there is a grand plan for the universe, and so the concept of a cosmic balance is anathema to my view of life. Yet as much as I may know this to be the case, I can find it hard to believe, to really internalise. And so I do feel guilty sometimes, and I suspect many others who love her feel likewise. The main way in which this guilt manifests itself is the feeling that I'm not doing enough. I call this "healthy person's guilt".
Now, before I go further, let me be crystal clear: this is absolutely not a fishing-for-compliments attempt. I know logically that I am helping and am not looking for reassurances of that fact. Further, for reasons I'm not entirely clear on, I don't take compliments terribly well, so I sincerely am not looking for any kind of ego boost from this, so please do not construe it as such.
Instead, the point I'm trying to make is that this feeling is endemic to these types of situations. Part of it is my own tendency to set lofty goals and then follow-through poorly. When Electra's condition came to light, I had visions of doing reams of research into the condition, the treatment, case studies and support groups, and intended to work towards becoming an AML expert, insofar as is possible for someone untrained in human biology and medical science. Instead, I've done none of this. I still provide care and support, the research side has gone nowhere.
Secondly, it can be tough for me when I'm down south. Now, I hesitate to write this, because I will be reading it to Electra shortly and I don't want her to think for a minute that she's imposing on me in any way or that I'm resentful of the time I spend here. I'm not at all, but Electra isn't exactly immune to needless feelings of guilt. Instead, my point is that while I know (again, in the logical part of my brain) that I need to spend time away for my own well-being and mental health, it can be hard to internalise and I do sometimes feel guilty when I am absent. This visit was preceded by a two-and-a-half-week block in the south, due to work commitments and a doctor's appointment of my own which I couldn't easily reschedule. But 18 days is too long and I won't be away for such an extended period again. I have also been late in arriving the past two days, and have forgotten to bring certain items (books etc.) with me, something else for which I feel guilty.
In the end, this is something I need to work through, and I am. It is hard for me to be away, but it's also re-energising. And I do know that I'm helping, even if that is just to be here, cut her hair, hold her hand and sneak her some chips. A patient's mental well-being is vital to recovery and I know that I am aiding in this way, to some degree. So the important thing to scope out is where I am right and can/should be doing more (i.e. arriving on time for my visits) and where I'm being irrational and self-immolating. In the latter instance, I need to let my logical brain rule more and make peace with the fact that while I cannot wave a magic wand and cure Electra, that I am doing that which is in my power to do in order to help. I just wish I felt like I was doing enough.
UPDATE
So, a general update on progress. Electra is now well and truly in the neutrapenic phase of her second cycle. She finished the chemo a week ago (Saturday the 19th to be specific), and her neutrophils dropped to zero mid-week. She was allowed a brief respite out of the hospital from Monday through Thursday, and has been back in since Thursday morning.
This cycle has been a bit of a mixed bag. The treatment itself was more traumatic (in cycle one, she felt relatively few ill-effects during the first week of the actual application of the chemo, this time around she was weak and nauseous frequently). However, the neutrapenic recovery period has been more varied. In the first cycle, she was walloped pretty hard. I wasn't present but was in frequent touch and I know how tough it truly was for her. Fatigue was constant, nausea frequent and infections common. This time around has been much better. Her energy levels are often OK and her appetite has been pretty good overall. She's been able to be more alert and enthusiastic, both in person and on the phone. However, there are still some serious down points. She is frequented by bouts of discomfort and a general unwell feeling. Eating can often be draining, and she's still not sleeping perfectly. Though she's avoided major infections, she's spiked fevers from time-to-time and has been sweaty or clammy on occasion. But overall, it does give confidence that she can react well to the treatment. Whereas the last neutrapenic phase was an all-out thrashing, this one has played out more like an even-handed battle.
She should be coming out of the neautrapenic phase in a week or so and will hopefully get the following week out of the hospital. I'll be returning to London on Tuesday with the intent of coming up as soon as she's out so we can spend some time together in an environment that's more hospitable (and less hospital heh heh heh).
And I really will try to post more, I promise.
Sunday, February 13, 2011
Electra & AML: Once More Into The Breach Dear Friends
(See all posts related to Electra's ongoing treatment)
So, I haven't really kept up my plan of "post more often, if shorter posts". So let me start with a bit of an update:
Electra is currently back in hospital for round two of treatment. It was a little bit of a rocky road getting in there. The original plan was to have her get her bone marrow treatment on Tuesday the 1st and go back in for round two on Thursday (the 3rd). However, as I mentioned previously, she pushed it back to Thursday. Ultimately, the choice between painful procedure versus less painful procedure and additional weekend of freedom with myself was an easy choice. So in the end, she was scheduled to go back in on Monday (the 7th).
However, best laid plans being as they are, even this was ultimately altered. The ward she's in had no available beds, so she was asked to try again on Tuesday. Evidently, even though the first cycle must be administered with the utmost urgency, once wiped out the malformed "blast" cells take some time to come back, so the push to recommence is lessened. So she came back on Tuesday, when a bed freed up. However, still things were not as required. In the intervening time, Electra managed to pick up a nasty infection (probably another iteration of her recurring throat infection). Since chemo decimates one's immune system, they are loathe to start it while the patient is already ill. So, intravenous and oral antibiotics were the course of choice. The idea was to tackle the infection first and foremost, then commence chemo.
And yesterday (Saturday the 12th) was the kickoff. The infection had raged a bit, and Electra had been kept in the hospital the entire time for the sake of monitoring and administration of the antiobiotics. But by Friday, things were calming down and she was pushing to get chemo started on Saturday (as weird as it is to request the injection of poison into your veins, an early start does of course correspond to an early cessation). And she was successful! So she is currently (as I write this) completing her second day of round two.
This time around, though, it's been harder. We knew it would be, of course, so were somewhat prepared. But because her system was already at less than 100% when the treatment started, all the effects have been worse than the first time around. Cycle one didn't start to get bad until at least half-way through; cycle two started to get bad about a half-hour into the treatment. The symptoms were as before: nausea, fatigue, chills, etc. But this time they seemed much worse. Fortunately, Electra is getting better at asking for help in these instances (though it still takes some prodding from yours truly), and the anti-nausea meds have done a reasonable job.
On my end, the push back on the start date of chemo affected my plans. I'd intended to go up today, but Electra and I decided that it was best to have me present for the week after the actual chemo application (which is generally the hardest week and the one where she really needs support). So I've bumped it back until Wednesday the 23rd (due to a doctor's appointment of my own and a work commitment, I can't leave until that Wednesday). This will be the longest stretch we've had apart since this whole shebang started, and it will be very tough for both of us I think. I miss Electra quite a lot and though I know it's dumb, can't help but feel that I'm not doing my duty and really should be up there. Electra for her part, misses the comfort and support that I can provide, though she's been very clear that it's good for me to spend time in the South and not be a martyr in this. Plus, this longer period of time allows me to get some things done that I've been putting off too long. When I'm only home for a week at a time, I tend to triage much more than during longer breaks: I only deal with the most pressing "to do" items, so the myriad of little things I want to work on tend to slip. This longer break will give me a chance to correct that. But that doesn't mean it's not hard.
So, the treatment continues. This cycle promises to be harder than the first, a daunting prospect no doubt. But as usual, I am cautiously optimistic. Electra's progress during the first cycle was incredibly promising, and although there were bumps in the road in terms of infections and side-effects, these are to be expected and the key signs (response to the chemo and bounce-back time of her immune system) all point to a course of treatment bound for success. Doesn't mean I'm not keeping my fingers crossed while knocking on wood and rubbing a rabbit's foot wrapped around a four-leaf clover, but hope is present.
So, I haven't really kept up my plan of "post more often, if shorter posts". So let me start with a bit of an update:
Electra is currently back in hospital for round two of treatment. It was a little bit of a rocky road getting in there. The original plan was to have her get her bone marrow treatment on Tuesday the 1st and go back in for round two on Thursday (the 3rd). However, as I mentioned previously, she pushed it back to Thursday. Ultimately, the choice between painful procedure versus less painful procedure and additional weekend of freedom with myself was an easy choice. So in the end, she was scheduled to go back in on Monday (the 7th).
However, best laid plans being as they are, even this was ultimately altered. The ward she's in had no available beds, so she was asked to try again on Tuesday. Evidently, even though the first cycle must be administered with the utmost urgency, once wiped out the malformed "blast" cells take some time to come back, so the push to recommence is lessened. So she came back on Tuesday, when a bed freed up. However, still things were not as required. In the intervening time, Electra managed to pick up a nasty infection (probably another iteration of her recurring throat infection). Since chemo decimates one's immune system, they are loathe to start it while the patient is already ill. So, intravenous and oral antibiotics were the course of choice. The idea was to tackle the infection first and foremost, then commence chemo.
And yesterday (Saturday the 12th) was the kickoff. The infection had raged a bit, and Electra had been kept in the hospital the entire time for the sake of monitoring and administration of the antiobiotics. But by Friday, things were calming down and she was pushing to get chemo started on Saturday (as weird as it is to request the injection of poison into your veins, an early start does of course correspond to an early cessation). And she was successful! So she is currently (as I write this) completing her second day of round two.
This time around, though, it's been harder. We knew it would be, of course, so were somewhat prepared. But because her system was already at less than 100% when the treatment started, all the effects have been worse than the first time around. Cycle one didn't start to get bad until at least half-way through; cycle two started to get bad about a half-hour into the treatment. The symptoms were as before: nausea, fatigue, chills, etc. But this time they seemed much worse. Fortunately, Electra is getting better at asking for help in these instances (though it still takes some prodding from yours truly), and the anti-nausea meds have done a reasonable job.
On my end, the push back on the start date of chemo affected my plans. I'd intended to go up today, but Electra and I decided that it was best to have me present for the week after the actual chemo application (which is generally the hardest week and the one where she really needs support). So I've bumped it back until Wednesday the 23rd (due to a doctor's appointment of my own and a work commitment, I can't leave until that Wednesday). This will be the longest stretch we've had apart since this whole shebang started, and it will be very tough for both of us I think. I miss Electra quite a lot and though I know it's dumb, can't help but feel that I'm not doing my duty and really should be up there. Electra for her part, misses the comfort and support that I can provide, though she's been very clear that it's good for me to spend time in the South and not be a martyr in this. Plus, this longer period of time allows me to get some things done that I've been putting off too long. When I'm only home for a week at a time, I tend to triage much more than during longer breaks: I only deal with the most pressing "to do" items, so the myriad of little things I want to work on tend to slip. This longer break will give me a chance to correct that. But that doesn't mean it's not hard.
So, the treatment continues. This cycle promises to be harder than the first, a daunting prospect no doubt. But as usual, I am cautiously optimistic. Electra's progress during the first cycle was incredibly promising, and although there were bumps in the road in terms of infections and side-effects, these are to be expected and the key signs (response to the chemo and bounce-back time of her immune system) all point to a course of treatment bound for success. Doesn't mean I'm not keeping my fingers crossed while knocking on wood and rubbing a rabbit's foot wrapped around a four-leaf clover, but hope is present.
Sunday, January 23, 2011
Electra & AML: The road to recovery
So, a little update and some general housekeeping/response to a few bits of criticism.
First, the update, and the update is predominantly good news. In short, today was a day that brought some very welcome positive news. As I described in my first posting on the subject, in each cycle of chemotherapy, one's immune system is decimated along with the the cancerous cell (in this case in Electra's bone marrow). The hope, of course, is that the immune system starts to rebound more quickly than the cancer, and the body heals itself and also wipes out the cancer. Electra will go through four of these cycles.
Well, today marked a milestone in that Electra's platelet count has stabilised. The platelets, which are responsible for blood clotting, fixing bruises and so forth in the body, are one of the three types of blood cells which Electra was low on (the others being white and red blood cells). She's been receiving platelet transfusions during her treatment to keep these levels up-transfusions to which she's had several significant adverse reactions. However, over the past two days, her platelet levels have remained essentially stable (dropping from 47 on Friday, to 45 yesterday and 44 today). This is a clear and unambiguous sign that her body has started to recover, as normally they would've dropped to the mid-20s in this time period. So, her body has clearly begun to manufacture its own platelets, a very important step indicative of a recovering system.
The next key marker is to see her neutrophils recover. Neutrophils are the most abundant type of white blood cell and the body's primary defense mechanism against disease and infection-basically the Royal Marines of the body. It is the lack of these cells that puts her at the most risk of infection while at the hospital, requiring greater isolation, careful attention to diet and related precautions. If these start to rebound in significant numbers (likely to happen within the next week or so), so should be able to get out of the hospital for awhile and do some recovery at home. This will be an obvious boon for her spirits. Of course, it's also the harbinger of the second cycle of chemo; it's important to attack the cancer before it has a chance to regroup, so it's done while the body is at its healthiest and the cancer only starting to rebound. So the double-edged sword is that when you feel at your best, you get hit with round two of chemo. But that's for another week; for now, she has a home visit to look forward to.
On a potentially more pragmatic note, Electra's mother (who'd been visiting for two weeks) and brother (who'd been visiting for the last week or so) both left today, and she was sad to see them go, as were they at having to leave. Sadly, the is is the reality of Electra's situation; her geographic separation from her family makes visits hard and though the time is precious, real life insists they must eventually come to an end. I am here for her now and can hopefully pick up some of that slack, but when you're sick, I'm not sure that anyone or anything can replace your parents and siblings.
So, now onto some constructive criticism I've received about these posts. Electra feels that I've been sugarcoating the news for all of you, trying to soften blows and edit reality. And I suppose that's true to an extent; I don't relish the thought of being the bringer of doom and/or gloom, so perhaps I do try to put a positive spin on things; alternately maybe I'm just a glass-half-full type of guy (I'm not; I personally feel that in that allegory the glass is merely twice as large as is required). So, let me be blunt: things are looking up, but they were very hard for a time. Electra lost most of her appetite, she was nauseous and in pain for much of the day, her hair has started to fall out and she repeatedly spiked a fever. The doctors assured us that everything she experienced was to be expected and that we needn't fret, but it's hard not to. Every single day was a struggle for her for more than a week, specifically the week after chemo ended. Her body had been hit by ten days of intense and horrific treatment and responded by essentially shutting down. Fatigue was constant, dizziness frequent and she ached and felt like she'd been run over by a train.
This was hard for me to hear, and I know it was hard for her mother to witness. I don't know whether to feel relieved to have missed it, or guilty to have done so, but I expect to be here for much of the week after her 2nd cycle of chemo, which we're told will be even worse, so perhaps that will be my penitence for missing the first one. All I know is that while I am confident things will turn out well, and the doctors felt she was reacting as well as can be expected, that the end-of-tunnel light was tough to spot at times. It should be noted in my defense that I wasn't wholly coddling you all; Electra was in fact coddling me and not filling me in on all these details. Further, I don't want to alarm you, so perhaps I was softening a little-this aspect of the treatment is expected, she is very well monitored by very competent people. Were there anything to be alarmed about, we would be informed. But I don't want to seem like I'm sugar-coating: she will emerge victorious, but only after four very intense battles. This is Iwo Jima in 1945: an all-out battle with great cost and sacrifice but one I know we can win.
Monday, January 17, 2011
Electra & AML: To Be Or Not To Be (A Raging Hypochondriac)
(See all posts related to Electra's ongoing treatment)
I have a well-established policy when it comes to health issues: ignore them long enough and they'll generally go away on their own. By and large, this has served me well: I'm almost always fairly healthy and bumps in the road tend to just be that. That's (a small) part of why this experience with Electra has been particularly scary.
We saw symptoms of leukaemia in Electra for months. But the terrifying and frustrating thing is that-as simple as it is to look back now and connect the dots-there was nothing to really cause any alarm. She'd been pretty fatigued and low energy for months. OK, well it's autumn in England, which will depress anyone (I've been lead to believe the sun does in fact still exist, but I'm not buying that story!). And beyond that, her work is intense. That, combined with a fairly repetitive daily routine and a feeling of inertia in terms of living arrangements and such made it easy to explain away as just a case of the "blahs", perhaps with a vitamin or mineral deficiency thrown in for good measure.
She'd had a sore throat, very painful and accompanied by a dry cough, that kept coming back. Well, OK, she works with kids; I'm by no means a germophobe, but the only reason that kids weren't the root cause of the plague was because we had the good sense to keep them locked away from the general public back then. You just kind of expect to get sick if you work with kids, especially in your first year or two. So the handful of other sicknesses she seemed to pick up (congestion, flulike symptoms, nausea etc) were easily chalked up to the same thing, with a run of bad luck assumed as the primary cause. She also bruised easily and once or twice had odd red dots appear on her skin, but the former could simply be a case of "just because" and the latter perhaps some slight allergic reaction.
And that's what's really scary. You can look back and attribute every aspect of what I've just described to the AML. Lowered white blood cell counts result in an immune system susceptible to everything. Low platelets lead to easy bruising and the red dots. And low red blood cell counts sap your energy. In retrospect it's obvious; at the time, of course not. The irony is that we'd wondered why she was seeming to have such a run of bad health luck and even postulated something serious, but never believed it to be the case.
Under these circumstances, it's thus hard to maintain myhyperchondriac mega-chondriac reckless anti-hypochondriac tendencies. I'm not now running to the doctor for every sniffle, but in the back of my mind is a little more fear than once resided there. This is of course compounded by the realities of the modern age: as useful a tool as WebMD's symptom checker can be, self-diagnosis is never a good idea, even if I were a real doctor, much less as a borderline-competent Ph.D. engineer. Pretty much any symptom plugged into a symptom checker can be a symptom of some type of cancer (or AIDS, or Ebola or Kuru or god knows what).
I will, of course, return to a wanton disregard for my own health, but I suspect I may have a lasting worry about others beyond what I've got now. I've always excelled at giving others advice that I myself refuse to follow and "go to the doctor" has always been high up that list anyway. I just hope I can refrain from call an ambulance every time Electra sneezes from now on.
This is compounded by her central line (aka Hickman line), which was put in on Thursday. The backstory is that she initially had a PICC line put in until she could have the Hickman installed, which is only done on Thursdays. Both lines have the same purpose: a permanent in/out catheter to allow for injection of chemotherapy and other IV medications, and taking blood for sampling. In long-term patients this is done to avoid having to stick them with needles five times a day for six months. The PICC line goes into the crook of the elbow, up past the shoulder and stops above the atria of the heart; it is shorter-term than the Hickman, which is inserted into the right breast area and goes directly into the jugular. In any event, on Tuesday, the nurses and doctors became concerned that the PICC line might have gotten infected, so it had to be removed and a temporary line was put into her hand, which hurt like hell. On Thursday, that came out and the Hickman went in. While this will be much better in the long run, it is a minor surgery and has resulted in bruising (which of course takes longer to heal with no platelets). So she's quite sore and tender much of the time, which further decreases sleep.
So physically, things aren't great. Fatigue, discomfort, pain and chills (from the fever) don't make for a happy camper. But I think what's worse is the frustration. At more than two weeks in the hospital now, Electra is starting to feel the profound sense of impotence that comes with an extended illness (I swear, I'm not making a dick joke here, I do mean impotence in the more traditional sense i.e. powerlessness). As a patient, you have no real control over... anything. You eat when they bring you food, you are confined to your room, you lack the energy to do much of anything you'd do in your normal life. You have people who love you that are watching out for you and taking care of the minutae of life-paying car tax, working out details with the landlord, etc. But it's easy to feel helpless and patronised under these circumstances. It's the way it has to be, but that doesn't mean it's appealing. And I think Electra is starting to feel that way much more, which is frustrating.
I want to be clear: it's not a horrible, grey, dire situation. She's responding to the treatment about as well as you could expect and in a week or so should start to get her immune system back, which will help with the sleeping and the energy and all the rest, and should bring some relief. But the past week has been the most challenging so far.
I have a well-established policy when it comes to health issues: ignore them long enough and they'll generally go away on their own. By and large, this has served me well: I'm almost always fairly healthy and bumps in the road tend to just be that. That's (a small) part of why this experience with Electra has been particularly scary.
We saw symptoms of leukaemia in Electra for months. But the terrifying and frustrating thing is that-as simple as it is to look back now and connect the dots-there was nothing to really cause any alarm. She'd been pretty fatigued and low energy for months. OK, well it's autumn in England, which will depress anyone (I've been lead to believe the sun does in fact still exist, but I'm not buying that story!). And beyond that, her work is intense. That, combined with a fairly repetitive daily routine and a feeling of inertia in terms of living arrangements and such made it easy to explain away as just a case of the "blahs", perhaps with a vitamin or mineral deficiency thrown in for good measure.
She'd had a sore throat, very painful and accompanied by a dry cough, that kept coming back. Well, OK, she works with kids; I'm by no means a germophobe, but the only reason that kids weren't the root cause of the plague was because we had the good sense to keep them locked away from the general public back then. You just kind of expect to get sick if you work with kids, especially in your first year or two. So the handful of other sicknesses she seemed to pick up (congestion, flulike symptoms, nausea etc) were easily chalked up to the same thing, with a run of bad luck assumed as the primary cause. She also bruised easily and once or twice had odd red dots appear on her skin, but the former could simply be a case of "just because" and the latter perhaps some slight allergic reaction.
And that's what's really scary. You can look back and attribute every aspect of what I've just described to the AML. Lowered white blood cell counts result in an immune system susceptible to everything. Low platelets lead to easy bruising and the red dots. And low red blood cell counts sap your energy. In retrospect it's obvious; at the time, of course not. The irony is that we'd wondered why she was seeming to have such a run of bad health luck and even postulated something serious, but never believed it to be the case.
Under these circumstances, it's thus hard to maintain my
I will, of course, return to a wanton disregard for my own health, but I suspect I may have a lasting worry about others beyond what I've got now. I've always excelled at giving others advice that I myself refuse to follow and "go to the doctor" has always been high up that list anyway. I just hope I can refrain from call an ambulance every time Electra sneezes from now on.
STATUS UPDATE:
So, just to provide a long-overdue and much-needed update: the last week has been really really difficult for Electra. Where she was doing well with a few rough spots, she is now almost constantly tired and uncomfortable. She continues to spike fevers from time to time (rarely about 38.5C or so, but still a cause for concern), so she's on 4 or 5 antibiotics as well as an anti-fungal for good measure. These have to be administered at specific times which means she's often up until 12:30AM and then awoken once more at 6:00AM for the next round. So a good night's sleep is as yet elusive.This is compounded by her central line (aka Hickman line), which was put in on Thursday. The backstory is that she initially had a PICC line put in until she could have the Hickman installed, which is only done on Thursdays. Both lines have the same purpose: a permanent in/out catheter to allow for injection of chemotherapy and other IV medications, and taking blood for sampling. In long-term patients this is done to avoid having to stick them with needles five times a day for six months. The PICC line goes into the crook of the elbow, up past the shoulder and stops above the atria of the heart; it is shorter-term than the Hickman, which is inserted into the right breast area and goes directly into the jugular. In any event, on Tuesday, the nurses and doctors became concerned that the PICC line might have gotten infected, so it had to be removed and a temporary line was put into her hand, which hurt like hell. On Thursday, that came out and the Hickman went in. While this will be much better in the long run, it is a minor surgery and has resulted in bruising (which of course takes longer to heal with no platelets). So she's quite sore and tender much of the time, which further decreases sleep.
So physically, things aren't great. Fatigue, discomfort, pain and chills (from the fever) don't make for a happy camper. But I think what's worse is the frustration. At more than two weeks in the hospital now, Electra is starting to feel the profound sense of impotence that comes with an extended illness (I swear, I'm not making a dick joke here, I do mean impotence in the more traditional sense i.e. powerlessness). As a patient, you have no real control over... anything. You eat when they bring you food, you are confined to your room, you lack the energy to do much of anything you'd do in your normal life. You have people who love you that are watching out for you and taking care of the minutae of life-paying car tax, working out details with the landlord, etc. But it's easy to feel helpless and patronised under these circumstances. It's the way it has to be, but that doesn't mean it's appealing. And I think Electra is starting to feel that way much more, which is frustrating.
I want to be clear: it's not a horrible, grey, dire situation. She's responding to the treatment about as well as you could expect and in a week or so should start to get her immune system back, which will help with the sleeping and the energy and all the rest, and should bring some relief. But the past week has been the most challenging so far.
Thursday, January 06, 2011
Electra & AML: The fear factor
(See all posts related to Electra's ongoing treatment)
So, one of the biggest things with cancer of any kind is the fear. And I've been thinking about this a lot since we got the diagnosis. Am I scared? Should I be scared? What about Electra? Should she be? And in the end, I don't know. As weird as it sounds, I can't tell if I'm scared or not.
On the one hand, I'm a numbers guy, bound by logic and science. And the numbers, so far as I can gather, are promising. Electra has a lot in her favour: she's young and generally healthy. She's got good support (including yours truly) and the hospital seems really on top of their game. Her parents have sought some outside advice from a friend-of-a-cousin who happens to be a bone marrow specialist at the Mayo clinic who says the treatment she's on is good and generally pretty effective. So overall, I am confident that she'll get through this.
But there are times when it can be hard to see. Electra seems to react quite poorly to one of the chemotherapy drugs, called atopside. This is administered once per day for the first five days of her treatment, and every time she's gotten it (she's just completed day six now), she gets dizzy and nauseous, sometimes even weak and cold (like yesterday). When this happens, it can be scary. Because it's one thing to know that the numbers are on your side, it's quite another to see the one you love shaking from the cold in a very warm room as the walls spin around her.
It's like any other semi-irrational fear. For example, there are a great many people living in Canada or the UK who are afraid of snakes. Now, there are no poisonous snakes in either country, but that fear is imprinted on our brains and it can take hold, logic be damned. But the thing to do is accept that your body feels the fear but you control your reactions. I saw a World War Two show on TV once where a soldier who'd fought in D-Day said that courage isn't not being afraid, it's being afraid but doing what you have to do anyway.
So am I scared? Maybe a little. But the doctors aren't and that gives me hope. The trends back up my confidence-AML is beatable and she has a lot working for her. So when the bad times hit and she seems frail and weakened… well, that's just when it's time to steel my nerves and remember the reality: things are OK. There will be good days and bad, high energy and low. This is part of the process and she will get through it. We will get through it. Scared or not, we will push once more into that breech dear friends.
So, one of the biggest things with cancer of any kind is the fear. And I've been thinking about this a lot since we got the diagnosis. Am I scared? Should I be scared? What about Electra? Should she be? And in the end, I don't know. As weird as it sounds, I can't tell if I'm scared or not.
On the one hand, I'm a numbers guy, bound by logic and science. And the numbers, so far as I can gather, are promising. Electra has a lot in her favour: she's young and generally healthy. She's got good support (including yours truly) and the hospital seems really on top of their game. Her parents have sought some outside advice from a friend-of-a-cousin who happens to be a bone marrow specialist at the Mayo clinic who says the treatment she's on is good and generally pretty effective. So overall, I am confident that she'll get through this.
But there are times when it can be hard to see. Electra seems to react quite poorly to one of the chemotherapy drugs, called atopside. This is administered once per day for the first five days of her treatment, and every time she's gotten it (she's just completed day six now), she gets dizzy and nauseous, sometimes even weak and cold (like yesterday). When this happens, it can be scary. Because it's one thing to know that the numbers are on your side, it's quite another to see the one you love shaking from the cold in a very warm room as the walls spin around her.
It's like any other semi-irrational fear. For example, there are a great many people living in Canada or the UK who are afraid of snakes. Now, there are no poisonous snakes in either country, but that fear is imprinted on our brains and it can take hold, logic be damned. But the thing to do is accept that your body feels the fear but you control your reactions. I saw a World War Two show on TV once where a soldier who'd fought in D-Day said that courage isn't not being afraid, it's being afraid but doing what you have to do anyway.
So am I scared? Maybe a little. But the doctors aren't and that gives me hope. The trends back up my confidence-AML is beatable and she has a lot working for her. So when the bad times hit and she seems frail and weakened… well, that's just when it's time to steel my nerves and remember the reality: things are OK. There will be good days and bad, high energy and low. This is part of the process and she will get through it. We will get through it. Scared or not, we will push once more into that breech dear friends.
Electra & AML: Diagnosis and the start of treatment
(See all posts related to Electra's ongoing treatment)
So, since most people likely to be reading this know me in the real world, most of you probably know my girlfriend Electra as well. We've been together for about two and a quarter years thus far and though we've had our fair share of bumps and issues, things are good. However, the end of last year saw a significant piece of bad news come our way. On December 31, 2010, Electra was diagnosed with Acute Myeloid Leukaemia (AML), a rare and aggressive-though generally treatable-form of bone marrow cancer. She is currently undergoing chemotherapy treatment at an oncology and haematology ward near where she lives.
This posting is the first in what will undoubtedly become a series of posts as treatment progress. I'm doing this for a few reasons. One is to document the process as it happens. I have faith that we will emerge happy and healthy at the other end of treatment (I'll explain why in a minute), and I'd like to have a record of the ups and downs as this obviously represents a significant and life-changing event for her, and to a lesser extent myself. Secondly, I'd like to be able to keep everyone who loves and cares for Electra informed of her status and progress. I will be in touch with many of you over emails, phone calls, facebook and the like, but this is an easy way to broadcast to everyone who wants to stay informed, without inundating everyone with countless emails and calls. Finally, I feel there are things I need to get down. call it self-indulgence, catharsis or venting, I just feel I have things I need to get off my chest.
This entry will be a little haphazard, but I'll try to keep things organised as best as possible. You'll have to excuse me if I ramble a bit, my thoughts are somewhat discombobulated at the moment.
Timeline: diagnosis and treatment
Once the process of diagnosis started, things moved quickly. Very quickly. But in reality, this has probably been building for quite some time. Electra has, for several months, felt a general sense of ill-health. Sometimes, this was a non-specific sentiment of "I just feel off", but there were some specifics. She had a throat infection which was wiped out by antibiotics, but kept coming back. She'd have long periods of low energy and lethargy. She bruised easily and they took quite some time to heal. Symptoms like this are frustrating, because the picture is so clear in hindsight, but impossible to pin down at the time. We just assumed she was having a run of bad luck and catching every bud that went around; the fact that she worked with children (a demographic not know for its strict adherence to WHO/CDC biohazard regulations) merely served to reinforce the idea that she was merely unfortunate enough to catch every little germ that floated by. We figured she'd get past each infection and slowly build up an immunity to working with kids (something I might point out never has to be done when one works with computers!)
But it all came to a head this December. We'd travelled to Vietnam and Malaysia at the end of November, returning early in December. Right before the trip, Electra had come down with a sore throat, which her doctor believed to be tonsillitis. It had lingered but eventually she seemed to get past it on her own. But while in Vietnam, it came back with a vengeance. We were able to take advantage of a glaring public policy oversight in Vietnam which allows for the purchase of antibiotics without a prescription. While a terrible idea from a public health standpoint, it was convenient for us, and the antibiotics wiped out the tonsillitis again. However, on returning to the UK, the sore throat came back a third time. This time her doc took some blood to check for Mono (aka Glandular Fever). And that's when it started to get real.
The initial scan showed some odd results and a diminished blood cell count. Enough so to warrant another test; this latter test was performed on Dec. 24th-blood taken in the morning and tests done by the afternoon. This speed worried us as such expedited service can often indicate a high level of concern. Unfortunately, Electra had left her phone in the car, not understanding that mobile phones are actually mobile and should be all but surgically implanted into oneself at all times. Her GP told her there were some anomalous results and to schedule an appointment for Wednesday the 29th, the first day the practice would be open after Christmas. We went in first thing on the 29th and were informed that there were some strange results including "blast cells", malformed blood cells that can indicate leukaemia, though they can also be indicative of many other less-scary conditions. But this was our first indication that something serious might be amiss.
The GP referred us to a haematologist (blood specialist) for the morning of the 30th. He told us that for someone of Electra's age, leukaemia was the most likely concern, and scheduled a bone marrow biopsy for that afternoon. A strange and unpleasant procedure, this was completed as scheduled and we went home to worry. Results were to be ready by the next morning (New Years Eve). At 10AM on the 31st, our fears were confirmed. Electra was diagnosed with Acute Myeloid Leukaemia (AML), an aggressive form of bone marrow cancer. She was to start treatment that night, an equally aggressive schedule of chemotherapy.
Say what you will about the NHS. But in two days we went from an unusual blood test to a diagnosis and commencement of treatment. When there's something big, the system works. But it doesn't give one much time to contemplate.
What is AML?
Acute Myeloid Leukaemia is one of four major types of leukaemia (which can be any combination of acute or chronic and myeloid or lymphoblastic). It is relatively rare, especially in people under the age of 60 or so, but isn't entirely unheard-of. It is fast-acting and without treatment "universally fatal" (in the words of the consulting haematologist/oncologist).
Instead of the creation of normal blood cells (red and white blood cells and platelets), bone marrow in an AML patient produces malformed cells called blast cells. These are harmful to the body because they can reside in the bone marrow and inhibit cell production, as well as circulating through the body. Mostly though, the damage comes because normal cells are not produced in sufficient quantities.
The positive side is that AML is-from what I understand-fairly treatable. My father, a GP in Canada described leukaemia as one of the "big wins" in the cancer research community. 10-15 years ago success stories were few, but now, with the right chemotherapy, barring any complications, remission is often achieved and
What is chemotherapy? What specific therapy is Electra undergoing?
Chemotherapy is basically like poisoning yourself to save your life. It looks harmless, just like any other bag of clear fluid, but in essence, chemotherapy is some of the most advanced poisons we've ever devised. I should be clear that what I'm going to describe is based on my understanding from the haematologist; I am by no means an expert in the field.
In essence, chemotherapy destroys the cancer cells throughout the body but with major collateral damage: it also wipes out the body's immune system. Neither is 100% wiped out by the treatment, there are always some residual cells. The hope is that the immune system bounces back faster, and can go to work on the remaining cancerous cells.
With each successive course of chemotherapy, more cancer cells are destroyed, but there will always be some remaining cancer in the body. The goal of the therapy is to decimate the cancer population enough that the body can naturally eliminate all the remaining malformed cells through its natural processes. In fact, we all have malformed cells in our body; but for those of us without cancer, there are few enough that our body's defences eliminate them.
To use an analogy, a normally-functioning body is like a society: there are a few bad seeds, but a well-trained police force can ferret them out and keep their influence from spreading too far. On the other hand, in a cancer sufferer, it's more like Detroit, or Moss Side (in Manchester): the malcontents have taken over and the only remaining solution is to nuke the entire area from space and hope that the good seeds repopulate more quickly and establish order.
Electra's treatment involves four cycles of high-dose chemotherapy. Each is 10 days long, and involves three standard drugs and one highly-targeted experimental drug as part of a clinical trial. After the administration of the chemotherapy she has a 4-6 week recovery period. The start of this period (and the latter half or so of the chemotherapy application) is the dangerous time. This is what's known as the nutrapenic phase, during which her immune system will be largely suppressed. She is therefore susceptible to all sorts of nasties including bacteria, viruses and fungi. Therefore, antibiotics, antivirals and antifungals agents (plus antihistamines and god knows what else) will be applied as needed, her vitals monitored very closely and her food and surroundings carefully controlled. As her immune system starts to rebuild, some of these precautions may be relaxed, and she may even be allowed to leave the hospital for a few days (fingers crossed!).
How's she doing?
Overall, pretty well. Chemotherapy is obviously very taxing on the body and we are as yet in early days, so things can change. Electra is a stronger than she's normally able to admit to herself and I know she'll fight this, but it's not going to be an easy struggle. At the moment, she's very tired, not only from the medication, but also from adjusting to life in a hospital-it's hard to get a good night's sleep with an IV in your arm and a whirring machine 30 centimetres from your head. Not to mention the pokes, prods and checks from the nurses. But she's adjusting.
Otherwise, there are some time when things seem more dire. She'll get cold, nauseous, dizzy or all of the above. These times are scary, but the nurses and doctors are well-prepared for this and their confidence is reassuring. The arsenal of medications at their disposal have so far been successful in getting her back to feeling alright and I think they will continue to do so.
The biggest challenge is to overcome her natural sense of "I don't want to cause any trouble". This means that I have to browbeat her into reporting everything to the nurses-every bout of nausea, chill and shiver, every pain or dizzy spell. It means that she has to be open with visitors when she gets tired. Although visiting is great and cheers her immensely, it can also be quite tiring and there may well be a point where she needs to rest but is too polite to say so. Fortunately, her adaptability shines through here and she's become good and doing both of these things. It's hard to get someone so giving to think of themselves, but she's learning.
How am I doing?
Also pretty well. My work has been excellent; I've spoken with my line manager about this and he's been amazingly supported, something for which I'm very indebted to him. I'm currently working remotely from Electra's house and visiting her in the evenings; when her mother comes next week I'll return to the office and devise a strategy for this. I know that I have to balance my caring for Electra and supporting her with my work and my life. Six months is a long time and I cannot spend every single day there. Fortunately, with her parents, her friends and her colleagues, she will be well tended.
I characterise my outlook as cautiously optimistic. I'm not naïve enough to think that we're out of the woods (hell, we're just on the inbound edge at this point). Infection is a real risk and complications do arise. But Electra is young, healthy (you know, aside from the whole cancer thing) and has a good support system. We also seem to have caught this early. So with all that being as it is and the progress being made on the research front, I am very confident she will beat this and I will help her in any way I can.
What I need to do, though, is the same thing I've asked of her: to take some care of myself. So far, I'm not sleeping a lot. And it's really starting to catch up with me. I cannot give her the care she deserves under those circumstances, so I need to stay on the right track (and maybe not write blog posts until 1:30AM for that matter). I also put myself at risk of infection which would mean I couldn't see her at all, which helps nobody.
But again, I'm optimistic. I'm ultimately a creature of pattern and adaptation and I simply need to find the right balance. Also get back into the gym and get rid of this Christmas spare tire, but that's neither here nor there.
What's the plan?
So what do we expect going forward? What's the plan, what's the hope, what's the fear? Well, as I say, I am confident that we can beat this, but make no mistake: it will be a slog. This is our Stalingrad: a slow battle of attrition, won by inches and at great cost. It will be hard for Electra and hard for her friends, family and other loved ones. But we will break the back of this cancer and come out all the better for it.
This blog will be a good forum for tracking progress; I intend to update it as often as I can as more information arises. Use the keyword "Electra+AML" to locate all related posts, or subscribe to the RSS feed. These posts should also be imported automatically into facebook.
But I will also be trying to live a somewhat normal life much of the time: back at work in Guildford and at play in London. I may be leaning on some or all of you for my own support and will also likely try to organise some visits and support for Electra. In the meantime, if you wish to send something, please email/call/text/facebook message me and I'll give you the appropriate address. Cards, balloons, chocolates, etc. are all good; flowers are not due to infection risks. There is of course no obligation whatsoever. She has phone signal in her room and will shortly have internet access we think, so love and thoughts are always appreciated. But please remember the fatigue: calls are more draining than texts, for example. Visits are welcome, but there will be good and bad times depending on her energy, fatigue and immunosuppression levels. Please feel free to contact me at any time and I'll advise.
Thanks to everyone who's read this far; this is a long crappy road but the destination is worth it and I know you will all help us get there.
So, since most people likely to be reading this know me in the real world, most of you probably know my girlfriend Electra as well. We've been together for about two and a quarter years thus far and though we've had our fair share of bumps and issues, things are good. However, the end of last year saw a significant piece of bad news come our way. On December 31, 2010, Electra was diagnosed with Acute Myeloid Leukaemia (AML), a rare and aggressive-though generally treatable-form of bone marrow cancer. She is currently undergoing chemotherapy treatment at an oncology and haematology ward near where she lives.
This posting is the first in what will undoubtedly become a series of posts as treatment progress. I'm doing this for a few reasons. One is to document the process as it happens. I have faith that we will emerge happy and healthy at the other end of treatment (I'll explain why in a minute), and I'd like to have a record of the ups and downs as this obviously represents a significant and life-changing event for her, and to a lesser extent myself. Secondly, I'd like to be able to keep everyone who loves and cares for Electra informed of her status and progress. I will be in touch with many of you over emails, phone calls, facebook and the like, but this is an easy way to broadcast to everyone who wants to stay informed, without inundating everyone with countless emails and calls. Finally, I feel there are things I need to get down. call it self-indulgence, catharsis or venting, I just feel I have things I need to get off my chest.
This entry will be a little haphazard, but I'll try to keep things organised as best as possible. You'll have to excuse me if I ramble a bit, my thoughts are somewhat discombobulated at the moment.
Timeline: diagnosis and treatment
Once the process of diagnosis started, things moved quickly. Very quickly. But in reality, this has probably been building for quite some time. Electra has, for several months, felt a general sense of ill-health. Sometimes, this was a non-specific sentiment of "I just feel off", but there were some specifics. She had a throat infection which was wiped out by antibiotics, but kept coming back. She'd have long periods of low energy and lethargy. She bruised easily and they took quite some time to heal. Symptoms like this are frustrating, because the picture is so clear in hindsight, but impossible to pin down at the time. We just assumed she was having a run of bad luck and catching every bud that went around; the fact that she worked with children (a demographic not know for its strict adherence to WHO/CDC biohazard regulations) merely served to reinforce the idea that she was merely unfortunate enough to catch every little germ that floated by. We figured she'd get past each infection and slowly build up an immunity to working with kids (something I might point out never has to be done when one works with computers!)
But it all came to a head this December. We'd travelled to Vietnam and Malaysia at the end of November, returning early in December. Right before the trip, Electra had come down with a sore throat, which her doctor believed to be tonsillitis. It had lingered but eventually she seemed to get past it on her own. But while in Vietnam, it came back with a vengeance. We were able to take advantage of a glaring public policy oversight in Vietnam which allows for the purchase of antibiotics without a prescription. While a terrible idea from a public health standpoint, it was convenient for us, and the antibiotics wiped out the tonsillitis again. However, on returning to the UK, the sore throat came back a third time. This time her doc took some blood to check for Mono (aka Glandular Fever). And that's when it started to get real.
The initial scan showed some odd results and a diminished blood cell count. Enough so to warrant another test; this latter test was performed on Dec. 24th-blood taken in the morning and tests done by the afternoon. This speed worried us as such expedited service can often indicate a high level of concern. Unfortunately, Electra had left her phone in the car, not understanding that mobile phones are actually mobile and should be all but surgically implanted into oneself at all times. Her GP told her there were some anomalous results and to schedule an appointment for Wednesday the 29th, the first day the practice would be open after Christmas. We went in first thing on the 29th and were informed that there were some strange results including "blast cells", malformed blood cells that can indicate leukaemia, though they can also be indicative of many other less-scary conditions. But this was our first indication that something serious might be amiss.
The GP referred us to a haematologist (blood specialist) for the morning of the 30th. He told us that for someone of Electra's age, leukaemia was the most likely concern, and scheduled a bone marrow biopsy for that afternoon. A strange and unpleasant procedure, this was completed as scheduled and we went home to worry. Results were to be ready by the next morning (New Years Eve). At 10AM on the 31st, our fears were confirmed. Electra was diagnosed with Acute Myeloid Leukaemia (AML), an aggressive form of bone marrow cancer. She was to start treatment that night, an equally aggressive schedule of chemotherapy.
Say what you will about the NHS. But in two days we went from an unusual blood test to a diagnosis and commencement of treatment. When there's something big, the system works. But it doesn't give one much time to contemplate.
What is AML?
Acute Myeloid Leukaemia is one of four major types of leukaemia (which can be any combination of acute or chronic and myeloid or lymphoblastic). It is relatively rare, especially in people under the age of 60 or so, but isn't entirely unheard-of. It is fast-acting and without treatment "universally fatal" (in the words of the consulting haematologist/oncologist).
Instead of the creation of normal blood cells (red and white blood cells and platelets), bone marrow in an AML patient produces malformed cells called blast cells. These are harmful to the body because they can reside in the bone marrow and inhibit cell production, as well as circulating through the body. Mostly though, the damage comes because normal cells are not produced in sufficient quantities.
The positive side is that AML is-from what I understand-fairly treatable. My father, a GP in Canada described leukaemia as one of the "big wins" in the cancer research community. 10-15 years ago success stories were few, but now, with the right chemotherapy, barring any complications, remission is often achieved and
What is chemotherapy? What specific therapy is Electra undergoing?
Chemotherapy is basically like poisoning yourself to save your life. It looks harmless, just like any other bag of clear fluid, but in essence, chemotherapy is some of the most advanced poisons we've ever devised. I should be clear that what I'm going to describe is based on my understanding from the haematologist; I am by no means an expert in the field.
In essence, chemotherapy destroys the cancer cells throughout the body but with major collateral damage: it also wipes out the body's immune system. Neither is 100% wiped out by the treatment, there are always some residual cells. The hope is that the immune system bounces back faster, and can go to work on the remaining cancerous cells.
With each successive course of chemotherapy, more cancer cells are destroyed, but there will always be some remaining cancer in the body. The goal of the therapy is to decimate the cancer population enough that the body can naturally eliminate all the remaining malformed cells through its natural processes. In fact, we all have malformed cells in our body; but for those of us without cancer, there are few enough that our body's defences eliminate them.
To use an analogy, a normally-functioning body is like a society: there are a few bad seeds, but a well-trained police force can ferret them out and keep their influence from spreading too far. On the other hand, in a cancer sufferer, it's more like Detroit, or Moss Side (in Manchester): the malcontents have taken over and the only remaining solution is to nuke the entire area from space and hope that the good seeds repopulate more quickly and establish order.
Electra's treatment involves four cycles of high-dose chemotherapy. Each is 10 days long, and involves three standard drugs and one highly-targeted experimental drug as part of a clinical trial. After the administration of the chemotherapy she has a 4-6 week recovery period. The start of this period (and the latter half or so of the chemotherapy application) is the dangerous time. This is what's known as the nutrapenic phase, during which her immune system will be largely suppressed. She is therefore susceptible to all sorts of nasties including bacteria, viruses and fungi. Therefore, antibiotics, antivirals and antifungals agents (plus antihistamines and god knows what else) will be applied as needed, her vitals monitored very closely and her food and surroundings carefully controlled. As her immune system starts to rebuild, some of these precautions may be relaxed, and she may even be allowed to leave the hospital for a few days (fingers crossed!).
How's she doing?
Overall, pretty well. Chemotherapy is obviously very taxing on the body and we are as yet in early days, so things can change. Electra is a stronger than she's normally able to admit to herself and I know she'll fight this, but it's not going to be an easy struggle. At the moment, she's very tired, not only from the medication, but also from adjusting to life in a hospital-it's hard to get a good night's sleep with an IV in your arm and a whirring machine 30 centimetres from your head. Not to mention the pokes, prods and checks from the nurses. But she's adjusting.
Otherwise, there are some time when things seem more dire. She'll get cold, nauseous, dizzy or all of the above. These times are scary, but the nurses and doctors are well-prepared for this and their confidence is reassuring. The arsenal of medications at their disposal have so far been successful in getting her back to feeling alright and I think they will continue to do so.
The biggest challenge is to overcome her natural sense of "I don't want to cause any trouble". This means that I have to browbeat her into reporting everything to the nurses-every bout of nausea, chill and shiver, every pain or dizzy spell. It means that she has to be open with visitors when she gets tired. Although visiting is great and cheers her immensely, it can also be quite tiring and there may well be a point where she needs to rest but is too polite to say so. Fortunately, her adaptability shines through here and she's become good and doing both of these things. It's hard to get someone so giving to think of themselves, but she's learning.
How am I doing?
Also pretty well. My work has been excellent; I've spoken with my line manager about this and he's been amazingly supported, something for which I'm very indebted to him. I'm currently working remotely from Electra's house and visiting her in the evenings; when her mother comes next week I'll return to the office and devise a strategy for this. I know that I have to balance my caring for Electra and supporting her with my work and my life. Six months is a long time and I cannot spend every single day there. Fortunately, with her parents, her friends and her colleagues, she will be well tended.
I characterise my outlook as cautiously optimistic. I'm not naïve enough to think that we're out of the woods (hell, we're just on the inbound edge at this point). Infection is a real risk and complications do arise. But Electra is young, healthy (you know, aside from the whole cancer thing) and has a good support system. We also seem to have caught this early. So with all that being as it is and the progress being made on the research front, I am very confident she will beat this and I will help her in any way I can.
What I need to do, though, is the same thing I've asked of her: to take some care of myself. So far, I'm not sleeping a lot. And it's really starting to catch up with me. I cannot give her the care she deserves under those circumstances, so I need to stay on the right track (and maybe not write blog posts until 1:30AM for that matter). I also put myself at risk of infection which would mean I couldn't see her at all, which helps nobody.
But again, I'm optimistic. I'm ultimately a creature of pattern and adaptation and I simply need to find the right balance. Also get back into the gym and get rid of this Christmas spare tire, but that's neither here nor there.
What's the plan?
So what do we expect going forward? What's the plan, what's the hope, what's the fear? Well, as I say, I am confident that we can beat this, but make no mistake: it will be a slog. This is our Stalingrad: a slow battle of attrition, won by inches and at great cost. It will be hard for Electra and hard for her friends, family and other loved ones. But we will break the back of this cancer and come out all the better for it.
This blog will be a good forum for tracking progress; I intend to update it as often as I can as more information arises. Use the keyword "Electra+AML" to locate all related posts, or subscribe to the RSS feed. These posts should also be imported automatically into facebook.
But I will also be trying to live a somewhat normal life much of the time: back at work in Guildford and at play in London. I may be leaning on some or all of you for my own support and will also likely try to organise some visits and support for Electra. In the meantime, if you wish to send something, please email/call/text/facebook message me and I'll give you the appropriate address. Cards, balloons, chocolates, etc. are all good; flowers are not due to infection risks. There is of course no obligation whatsoever. She has phone signal in her room and will shortly have internet access we think, so love and thoughts are always appreciated. But please remember the fatigue: calls are more draining than texts, for example. Visits are welcome, but there will be good and bad times depending on her energy, fatigue and immunosuppression levels. Please feel free to contact me at any time and I'll advise.
Thanks to everyone who's read this far; this is a long crappy road but the destination is worth it and I know you will all help us get there.
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