For the next thirteen hours we will be home alone again, as most couples are on an off-night. No social obligations in sight. No particular plans either. Just easy going.
Just before Fatima, de garde-malades, left, Lara had an argument with her metabolism - and lost it. Strange, for she had not eaten since breakfast, and that was seven hours before. As usual she had gotten into a coughing fit (who knows what triggered it) and the coughing in turn led to reflux. Nothing in her stomach now and her appetite totally gone. So food intake will be commensurate for the day. She doesn't seem particularly bothered and is fast asleep again.
My appetite is gone too after the Dutch team lost a socker match against the Danes in their opening match for the European Football Championship. What a pair we are.
I sit on the veranda; a chilly breeze moves the trees under a blue sky. The blackbird is singing from its favorite chimney. Suddenly I realize I am sitting there by myself. That will be the rule before long. I'd better get used to it.
Under the tones of Haydn's Drum Roll Symphony, around 10:00PM, I prepare the couch next to Lara's bed in the living room for my night watch posting. More than 45 nights now I have slept there, sometimes so soundly that Lara was unable to wake me up by the force of her voice. Using the electric chimes we have installed, she buzzed me out of my sleep. It is important that she call me over at any moment during the night, for I don't want to see her fall down again like the very first night she slept out here. Not to put too fine a point on it: she might hurt herself, and that can be dangerous; once she starts bleeding, she won't stop.
zaterdag 9 juni 2012
Orbit
Saturday 9 June afternoon
"Come sit with me", she said, once I was back from grocery shopping. I'll do better than that, I said, and lie down right beside you. Oh, she liked that.
There is a serene atmosphere hanging in the room. The drone and gurgle of the oxygen machine now banished to the kitchen, the music from the stereo (Mozart, clarinet concerto at Lara's request) can be peacefully enjoyed at a very soft volume. Positively soothing. Your friend is clad in a black flowy cotton skirt, a silk aqua top, a black cotton sleeved vest and a scarf in matching colors, which she described as 'funky' when she told me to go find it. Her breathing is quiet but shallow, and thankfully the coughing fits are fewer and shorter. Lips slightly apart, her hands cool.
You can tell she is losing strength. You take her fingers and there is hardly any tension in the muscles. As if she is reserving whatever she's got left on vital functions such as heartbeat and respiration. The occasional visitor (hardly any are planned at this stage) still gets to have an intelligent conversation out of her; she does continue to make sense, always interested to hear the latest family news and what not else. Invariably, though, at a certain point she lets people know she can't go on anymore. A long nap follows the inevitable goodbye.
Our doctor was in early this morning (10:30AM), and delighted to see us sitting at the table, then joining us for coffee. We talked. The GP told Lara that her luggage was labeled, checked in and safely on board, while her boarding pass was in her hand. All she needed to do was join the cue, find her seat, relax and enjoy departure. Nobody was holding her back. "Good to hear that being said out loud", was Lara's response.
Destination unknown. Lara doesn't believe in afterlife, and that, to her, is the scary part of dying: not knowing where you will end up. Our doctor does believe as a good catholic. She refers to people having come back from a near-death experience, the closest proof to witness testimony. Such people recount wonderous experiences and invariably they didn't want to come back down to earth any more. Sounds like a recommended environment, she suggests.
Lara's sleep tends to be deeper and deeper. Every time she's woken up, she comes from farther away, a pattern that is likely to grow more intense over the coming days. Until she spins off into orbit, irretrievably.
"Come sit with me", she said, once I was back from grocery shopping. I'll do better than that, I said, and lie down right beside you. Oh, she liked that.
There is a serene atmosphere hanging in the room. The drone and gurgle of the oxygen machine now banished to the kitchen, the music from the stereo (Mozart, clarinet concerto at Lara's request) can be peacefully enjoyed at a very soft volume. Positively soothing. Your friend is clad in a black flowy cotton skirt, a silk aqua top, a black cotton sleeved vest and a scarf in matching colors, which she described as 'funky' when she told me to go find it. Her breathing is quiet but shallow, and thankfully the coughing fits are fewer and shorter. Lips slightly apart, her hands cool.
You can tell she is losing strength. You take her fingers and there is hardly any tension in the muscles. As if she is reserving whatever she's got left on vital functions such as heartbeat and respiration. The occasional visitor (hardly any are planned at this stage) still gets to have an intelligent conversation out of her; she does continue to make sense, always interested to hear the latest family news and what not else. Invariably, though, at a certain point she lets people know she can't go on anymore. A long nap follows the inevitable goodbye.
Our doctor was in early this morning (10:30AM), and delighted to see us sitting at the table, then joining us for coffee. We talked. The GP told Lara that her luggage was labeled, checked in and safely on board, while her boarding pass was in her hand. All she needed to do was join the cue, find her seat, relax and enjoy departure. Nobody was holding her back. "Good to hear that being said out loud", was Lara's response.
Destination unknown. Lara doesn't believe in afterlife, and that, to her, is the scary part of dying: not knowing where you will end up. Our doctor does believe as a good catholic. She refers to people having come back from a near-death experience, the closest proof to witness testimony. Such people recount wonderous experiences and invariably they didn't want to come back down to earth any more. Sounds like a recommended environment, she suggests.
Lara's sleep tends to be deeper and deeper. Every time she's woken up, she comes from farther away, a pattern that is likely to grow more intense over the coming days. Until she spins off into orbit, irretrievably.
Dancing Queen
10 December 2007
Ambassadors stationed in Stockholm are duty-bound to attend the annual Nobel Prize ceremony in Stockholm's Concert Hall. Everyone who matters in Sweden is invited, the men in tails or uniforms, the ladies in long gowns, bedecked with decorations and jewels galore. A solemn and impressive occasion. If you happen to be an Ambassador with a fellow-citizen for a prize winner that particular year, you're in luck, for you are then invited with your spouse to attend the gala banquet afterwards, in Stockholm's City Hall. About 1400 guests share the pleasure. If you are less lucky, you get to pick up your coat downstairs at the end of the ceremony, try and reach your car in freezing weather and go home without as much as a glass of juice. Glitter paired with frugality.
All dressed up and nowhere to go. Not long before the Nobel ceremony in 2007, I was called to my next duty station (IAEA in Vienna), and Lara and I decided to invite all the "Nobel losers" over for a dance and drinks in the ballroom of the residence. It was going to double as our farewell party. In our three and a half years it was also the only private gala party in town. We have it on video for posterity.
Here we are photographed opening the dance floor, as the band played "What A Wonderfull World", our wedding song. People remember we were beaming with happiness.
Ambassadors stationed in Stockholm are duty-bound to attend the annual Nobel Prize ceremony in Stockholm's Concert Hall. Everyone who matters in Sweden is invited, the men in tails or uniforms, the ladies in long gowns, bedecked with decorations and jewels galore. A solemn and impressive occasion. If you happen to be an Ambassador with a fellow-citizen for a prize winner that particular year, you're in luck, for you are then invited with your spouse to attend the gala banquet afterwards, in Stockholm's City Hall. About 1400 guests share the pleasure. If you are less lucky, you get to pick up your coat downstairs at the end of the ceremony, try and reach your car in freezing weather and go home without as much as a glass of juice. Glitter paired with frugality.
All dressed up and nowhere to go. Not long before the Nobel ceremony in 2007, I was called to my next duty station (IAEA in Vienna), and Lara and I decided to invite all the "Nobel losers" over for a dance and drinks in the ballroom of the residence. It was going to double as our farewell party. In our three and a half years it was also the only private gala party in town. We have it on video for posterity.
Here we are photographed opening the dance floor, as the band played "What A Wonderfull World", our wedding song. People remember we were beaming with happiness.
vrijdag 8 juni 2012
Alone
Evening
Mozart symphonies (Prague Chamber) waft over to where Lara's reclines. The atmosphere is serene. The noisy oxygenator machine has been moved to the kitchen and we don't hear it any longer over here.
Her stomach has settled to the point where she doesn't feel nauseous any more. Her eyes are closed, but I know she is still awake. I ask her if I can get her anything. No. A kiss perhaps? Oh, yeah, she croons.
The house is finally empty of caretakers. No matter how much we appreciate them during the day, we also like a stretch of privacy during the evening.
Lara is relaxed being there just the two of us. For me, it is a bit of a liability. When something would go terribly wrong between now and tomorrrow 9:00AM, I would be on my own dealing with it. As a hypochondriac I am slightly anxious as to what might go wrong; which is actually quite a lot. I rehearse how I might combine a number of things: taking care of Lara's needs, alerting the infirmiere de garde or the doctor, buzzing them in when they'd finally arrive, while following their instructions in the meanwhile.
Then again, this feels so peaceful. Even if non-verbal, the atmosphere is precious. 'Nuf said.
Mozart symphonies (Prague Chamber) waft over to where Lara's reclines. The atmosphere is serene. The noisy oxygenator machine has been moved to the kitchen and we don't hear it any longer over here.
Her stomach has settled to the point where she doesn't feel nauseous any more. Her eyes are closed, but I know she is still awake. I ask her if I can get her anything. No. A kiss perhaps? Oh, yeah, she croons.
The house is finally empty of caretakers. No matter how much we appreciate them during the day, we also like a stretch of privacy during the evening.
Lara is relaxed being there just the two of us. For me, it is a bit of a liability. When something would go terribly wrong between now and tomorrrow 9:00AM, I would be on my own dealing with it. As a hypochondriac I am slightly anxious as to what might go wrong; which is actually quite a lot. I rehearse how I might combine a number of things: taking care of Lara's needs, alerting the infirmiere de garde or the doctor, buzzing them in when they'd finally arrive, while following their instructions in the meanwhile.
Then again, this feels so peaceful. Even if non-verbal, the atmosphere is precious. 'Nuf said.
Top of the Mountain
Friday 8 June noon
"How's the coffee?".
I ask her the question sitting across from her at the breakfast table. She is wearing her daytime attire. "Like only you can make it!", she says smugly, taking the last sip of her Lavazza. Then her head slumps back into the palms of her hands, her elbows on the table's edge; she no longer has the energy to keep herself properly sitting up straight, as she knows she should.
Her HB level (hemoglobin) has probably sunk below 5.0 by now. The effect of it is the same as mountain climbers experience on the top of Mount Everest, says Doctor Isabelle Willemot, our GP. Her pulse is around 100. (She picks something up from her little table and it shoots up to 114.). We have upped the oxygen supply to 7 liters a minute. Her saturation admirably sits at 98% still. Her pressure stable at 9 over 5. The lower the HB level dips, the more Lara will feel prone to sleep, devoid of energy. Once the pressure would go down from there, organs could begin to shut down.
Lara tells her doctor she is feeling spent; she has nothing more to give. That's allright, says Isabelle, don't hold back. If you want to go, just go. I told her the same. That was clearly reassuring, like a constraint had been lifted. She said as much. Now it was down to her. She could decide to let go or not, without anyone pulling her back. Master of her fate, captain of her soul.
There is no room anymore for optimism. Certainly, everyone is free to hope for a miracle; fair enough. After all, she pulled through last year when every doctor said she should have been gone already. This time around, what people seem to miss, is that the miracle has already happened but we failed to perceive it as such: Lara should have been dead six weeks ago. But she clung to life and stayed with us for all that time, receiving scores of visitors, writing and dictating messages, taking video and phone calls. She got her stuff in order, wrote a poem to appear on her death announcement, signed a last will and testament, divided her jewellery and accessories, gave specific instructions about 'afterwards', and said her goodbyes. We spent a lot of quality time together. What more can you wish for when struck by a deadly disease, spun out of control? Most patients by far never receive such leeway.
Janis, Lara's friend, quotes a man named Bill, who wrote an open letter shortly before he died,
"How's the coffee?".
I ask her the question sitting across from her at the breakfast table. She is wearing her daytime attire. "Like only you can make it!", she says smugly, taking the last sip of her Lavazza. Then her head slumps back into the palms of her hands, her elbows on the table's edge; she no longer has the energy to keep herself properly sitting up straight, as she knows she should.
Her HB level (hemoglobin) has probably sunk below 5.0 by now. The effect of it is the same as mountain climbers experience on the top of Mount Everest, says Doctor Isabelle Willemot, our GP. Her pulse is around 100. (She picks something up from her little table and it shoots up to 114.). We have upped the oxygen supply to 7 liters a minute. Her saturation admirably sits at 98% still. Her pressure stable at 9 over 5. The lower the HB level dips, the more Lara will feel prone to sleep, devoid of energy. Once the pressure would go down from there, organs could begin to shut down.
Lara tells her doctor she is feeling spent; she has nothing more to give. That's allright, says Isabelle, don't hold back. If you want to go, just go. I told her the same. That was clearly reassuring, like a constraint had been lifted. She said as much. Now it was down to her. She could decide to let go or not, without anyone pulling her back. Master of her fate, captain of her soul.
There is no room anymore for optimism. Certainly, everyone is free to hope for a miracle; fair enough. After all, she pulled through last year when every doctor said she should have been gone already. This time around, what people seem to miss, is that the miracle has already happened but we failed to perceive it as such: Lara should have been dead six weeks ago. But she clung to life and stayed with us for all that time, receiving scores of visitors, writing and dictating messages, taking video and phone calls. She got her stuff in order, wrote a poem to appear on her death announcement, signed a last will and testament, divided her jewellery and accessories, gave specific instructions about 'afterwards', and said her goodbyes. We spent a lot of quality time together. What more can you wish for when struck by a deadly disease, spun out of control? Most patients by far never receive such leeway.
Janis, Lara's friend, quotes a man named Bill, who wrote an open letter shortly before he died,
“…as my physical health reached a point where optimism about my health would have had to become self-denial, I realized the need to accept my own impending death. I also realized that self compassion meant feeling in my heart that even physical death was not a sign of weakness and failure. This seems to be the ultimate act of self acceptance.”
Lara has reached the top of the mountain - and what a climb it has been! Time to catch her breath and look out over creation.
donderdag 7 juni 2012
Glass
Afternoon
Is the glass half full or half empty? A perennial question. It depends on one's point of view, of course. For Lara as well. She came home on 24 April with an aplasiastic anemia over four cell lines, plus a pneumonia. The medical prognosis came down to a likely demise in a matter of days. That was 45 days ago! Since then her blood values are worse than before, but she still sits down at the table for every meal and she still gets out of the bed for the chaise (by herself in the middle of the night, not wanting to wake me up).
In short: 50 days ago she should have been doing a lot better, given her clinical condition, while today, she should be doing a lot worse than she does.
Her saturation is still normal but her pulse is on the high side at 110 bts/min. Her pressure is still 9 over 5.
Our homeopathic doctor is changing course and prescribing a different medication instead of the staphysagria. We are switching as of this evening to carbo vegetabilis (200K), 4 times a day.
Lara talked over the phone to several people from overseas: This morning her friend Rama called from New York, together with her son Yuva. Her nieces Brittney and Kelsey (on a conference call from Los Angeles) produced the most animated conversation, half of it with me, as Lara had to cop out. Her sister Holly (convalescing herself) also phoned in from Santa Rosa, California. One phone call unfortunately takes away energy for the next one, so she had to pass a few times as well. Now she is totally 'wasted', especially after coughing fits and reflux. The Litican and Novalgine keep her stomach and temperature in check.
With all the phone calls, we still manage to cut out quality time for the two of us, don't worry. More and more, it will become an act for two persons only - and that is how we want to have it.
Is the glass half full or half empty? A perennial question. It depends on one's point of view, of course. For Lara as well. She came home on 24 April with an aplasiastic anemia over four cell lines, plus a pneumonia. The medical prognosis came down to a likely demise in a matter of days. That was 45 days ago! Since then her blood values are worse than before, but she still sits down at the table for every meal and she still gets out of the bed for the chaise (by herself in the middle of the night, not wanting to wake me up).
In short: 50 days ago she should have been doing a lot better, given her clinical condition, while today, she should be doing a lot worse than she does.
Her saturation is still normal but her pulse is on the high side at 110 bts/min. Her pressure is still 9 over 5.
Our homeopathic doctor is changing course and prescribing a different medication instead of the staphysagria. We are switching as of this evening to carbo vegetabilis (200K), 4 times a day.
Lara talked over the phone to several people from overseas: This morning her friend Rama called from New York, together with her son Yuva. Her nieces Brittney and Kelsey (on a conference call from Los Angeles) produced the most animated conversation, half of it with me, as Lara had to cop out. Her sister Holly (convalescing herself) also phoned in from Santa Rosa, California. One phone call unfortunately takes away energy for the next one, so she had to pass a few times as well. Now she is totally 'wasted', especially after coughing fits and reflux. The Litican and Novalgine keep her stomach and temperature in check.
With all the phone calls, we still manage to cut out quality time for the two of us, don't worry. More and more, it will become an act for two persons only - and that is how we want to have it.
Waning
Thursday 7 June midday
Lara is clearly fading, her strength diminishing. She lies in bed mostly asleep. While awake, she wants to exercise her clarity of mind. That, too, will come under strain soon enough.
How so?
Terribly hard to say. This morning we had professor Schroyens over for a half hour visit, a man with an impeccable record as a hematologist and oncologist, and with impeachable bedside manners. From having read her file and from his own observation, he estimates that the end will come within a few days to a few weeks. He cannot be more precise. Loss of consciousness or awareness will come sooner. Life, he said, will be snuffed out gradually; she will go softly, like a flickering candle.
We discussed about transfusions. Friends and relatives are tormented most about this aspect of her demise. Why is she giving up? Lara is a fighter. Make her do battle!
Schroyens made clear that receiving transfusions is not going to prolong her life! She has cancer; it will run its course. Transfusions will improve the quality of life; give her comfort. Many people seem to believe that fresh blood will make her live longer. It will not. What transfusions take out of her are twelve hour days arond a trip to the hospital, plus one full day of recuperation, each time, once a week. Lara found that to be a waste. Not worth the investment. Schroyens agreed that the best way to proceed was the way Lara had chosen. He predicted her death to be serene and explained to her in detail what to expect, and what not to be afraid of.
He underlined that her blood values are very poor. An HB level of 5.0 is already very tenuous. The downward curve will soon start to have an effect on her awareness. How long it will take afterwards for her to pass on, depends on how her organs take the poor blood quality, notably the heart and lungs. She will not suffocate, he assured her. He didn't see any reason to change any element in her treatment.
Your hearing will go last, he said. He recommended we keep music on the whole time, rather than the wearing drone and gurgle of the oxygen machine.
Was she afraid to die, he wanted to know? Yes, a little, Lara replied with understatement. Death is not my favorite condition; but neither is the condition I am in now, Lara told him in Dutch. I am more afraid of dying than of death. I have never been dead before; I am ambivalent. Of course, you are, Schroyens said.
Lara made the point that she doesn't believe in God or a life hereafter. Would that make it easier for her to die, or more difficult? The doctor answered that as part of his profession he had seen many many people die. Most of them, by far, went easy. Two did not, he recalls, and they were the two strongest believers among all of his patients. Without prejudice.
We had just sat down for breakfast when he came. After he left, we finished our cappuccinos and Lara took a few bites of her soya yoghurt cum apple. Forget chewing, Schroyens had said, it is too tiring. Only fluids. Do soups or milkshakes. We will.
Lucidity is precious to Lara, up until her last breath almost. She is innately afraid of turning into a blithering idiot. Last night the codeine in her cough syrop (a morphine derivative) got to her, though. Even though her morphine level intravenously has been lowered to 10 mg/day, the cough suppressant gets to her quite directly. Lying next to her, I had to gently explain where she was and how she had gotten there. "I am not making sense, she said, and I hate it!"
Lara is clearly fading, her strength diminishing. She lies in bed mostly asleep. While awake, she wants to exercise her clarity of mind. That, too, will come under strain soon enough.
How so?
Terribly hard to say. This morning we had professor Schroyens over for a half hour visit, a man with an impeccable record as a hematologist and oncologist, and with impeachable bedside manners. From having read her file and from his own observation, he estimates that the end will come within a few days to a few weeks. He cannot be more precise. Loss of consciousness or awareness will come sooner. Life, he said, will be snuffed out gradually; she will go softly, like a flickering candle.
We discussed about transfusions. Friends and relatives are tormented most about this aspect of her demise. Why is she giving up? Lara is a fighter. Make her do battle!
Schroyens made clear that receiving transfusions is not going to prolong her life! She has cancer; it will run its course. Transfusions will improve the quality of life; give her comfort. Many people seem to believe that fresh blood will make her live longer. It will not. What transfusions take out of her are twelve hour days arond a trip to the hospital, plus one full day of recuperation, each time, once a week. Lara found that to be a waste. Not worth the investment. Schroyens agreed that the best way to proceed was the way Lara had chosen. He predicted her death to be serene and explained to her in detail what to expect, and what not to be afraid of.
He underlined that her blood values are very poor. An HB level of 5.0 is already very tenuous. The downward curve will soon start to have an effect on her awareness. How long it will take afterwards for her to pass on, depends on how her organs take the poor blood quality, notably the heart and lungs. She will not suffocate, he assured her. He didn't see any reason to change any element in her treatment.
Your hearing will go last, he said. He recommended we keep music on the whole time, rather than the wearing drone and gurgle of the oxygen machine.
Was she afraid to die, he wanted to know? Yes, a little, Lara replied with understatement. Death is not my favorite condition; but neither is the condition I am in now, Lara told him in Dutch. I am more afraid of dying than of death. I have never been dead before; I am ambivalent. Of course, you are, Schroyens said.
Lara made the point that she doesn't believe in God or a life hereafter. Would that make it easier for her to die, or more difficult? The doctor answered that as part of his profession he had seen many many people die. Most of them, by far, went easy. Two did not, he recalls, and they were the two strongest believers among all of his patients. Without prejudice.
We had just sat down for breakfast when he came. After he left, we finished our cappuccinos and Lara took a few bites of her soya yoghurt cum apple. Forget chewing, Schroyens had said, it is too tiring. Only fluids. Do soups or milkshakes. We will.
Lucidity is precious to Lara, up until her last breath almost. She is innately afraid of turning into a blithering idiot. Last night the codeine in her cough syrop (a morphine derivative) got to her, though. Even though her morphine level intravenously has been lowered to 10 mg/day, the cough suppressant gets to her quite directly. Lying next to her, I had to gently explain where she was and how she had gotten there. "I am not making sense, she said, and I hate it!"
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