Monday 30 April early evening
Lara is going through a real setback, having had a busy day. She wanted to eat together with me and I had everything prepared. But when it came down to supper, she barely mastered a bite or two. Hiccups followed, the third bout in one day. She didn't want the oxygen mask back on and signalled she was fine like this. Earlier she had still asked me if there were any cupcakes left. There were actually, but right now she doesn't seem in a rush.
This morning she felt she was getting weaker. Small wonder. Hardly any WBC left, sinking level of platelets and red blood cells on loan. No operational defense immune system in place. How long can she keep this up? I am not a doctor; what do I know? All I know is my sweet doesn't look healthy and acts irrationally. Why isn't the bloody night nurse here yet?
I remember the day my daughter was born, my first child. It was a Sunday afternoon in the summer of 1974. We were four people in the room: the gynocologist, the nurse, the pregnant mother and the stupid father. After the last push, from one moment to the next, we were all of a sudden five people in the room. A blaring baby had just added herself to the crowd. And the world didn't stop turning. I dread the scenario in reverse, one where a company of five would all of a sudden be reduced to one of four. I shudder.
The night nurse came around 8:30PM and went about her business with all due diligence. A classic example of an experienced and confidence-inspiring professional. She puts my mind at ease, too.
maandag 30 april 2012
Tears of Joy
Monday 30 April, Queen's Day
She wanted to eat breakfast with me, as in better days. And so she did. I collected the newspaper from the mailbox downstairs, as I normally would, we both had a cappuccino and she ate a whole bowl of soya fruity yoghurt wth muesli and a peeled tangerine.
A 'normal' morning, I discovered, is quite populated. The nurse comes in around 8:00AM to do the toilettage and check on everything else, assisted by a soignante, the care ladies who are here around the clock. Then the home care coordinator came by to, well, coordinate. Before she even left, the new doctor, Marie Frings, who replaces our GP, Isabelle Willemot, this week, came by and familiarized herself with Lara's situation. Shortly after lunch the physical therapist stopped by to connect her to a breathing exercise machine.
But the whopper of the day came shortly after noon. I had them wait in the kitchen until everybody else had left, and then announced them to Lara from the doorstep as two special friends on a surprise visit.
And in walk John and Marie Zderic.
They have known Lara practically from the day she was born and are now both in their late eighties, living in San Francisco. Lara always refers to them as my "pseudo parents". On a trip to London and Paris, they made a quick detour by TGV to Brussels, a trip of about one hour and a half. The last time we had laid eyes on them was the day after Xmass 2010, about three weeks before Lara truend into the hospital.
Lara's mouth fell open and her eyes went wide. She put both of her hands in front of her face and starting weeping tears of joy that just wouldn't stop. The emotions were mutual. Lara just couldn't believe that the two of them just whisked in and wihisked out again. They stayed for about an hour, engaging Lara in willing conversation. Then they proceeded to the Grand Place of Brussels, a world heritage sight to behold, before taking the train back to Paris around five. What a show. I was so happy to see Lara so happy.
After everybody had left, including her friend Liliana, who flies back to Madrid, all of her energy was pretty much gone. People see her while she is putting her best foot forward and conclude that she is not doing half as badly as I had made them believe before arriving. What they don't fully realize is how much effort it takes for Lara to keep up the level of alacrity and wit to which she feels her audience is entitled, coming from as far as they have come. Someone discussing French politics in an informed manner can't be anywhere close to death, or so the occasional visitors surmises. How wrong they might be to thinl that.
Until they would see her afterwards when her poor body slumps back into the big pillow and she just conks out from sheer exhaustion. But worth every single joule.
She wanted to eat breakfast with me, as in better days. And so she did. I collected the newspaper from the mailbox downstairs, as I normally would, we both had a cappuccino and she ate a whole bowl of soya fruity yoghurt wth muesli and a peeled tangerine.
A 'normal' morning, I discovered, is quite populated. The nurse comes in around 8:00AM to do the toilettage and check on everything else, assisted by a soignante, the care ladies who are here around the clock. Then the home care coordinator came by to, well, coordinate. Before she even left, the new doctor, Marie Frings, who replaces our GP, Isabelle Willemot, this week, came by and familiarized herself with Lara's situation. Shortly after lunch the physical therapist stopped by to connect her to a breathing exercise machine.
But the whopper of the day came shortly after noon. I had them wait in the kitchen until everybody else had left, and then announced them to Lara from the doorstep as two special friends on a surprise visit.
And in walk John and Marie Zderic.
They have known Lara practically from the day she was born and are now both in their late eighties, living in San Francisco. Lara always refers to them as my "pseudo parents". On a trip to London and Paris, they made a quick detour by TGV to Brussels, a trip of about one hour and a half. The last time we had laid eyes on them was the day after Xmass 2010, about three weeks before Lara truend into the hospital.
Lara's mouth fell open and her eyes went wide. She put both of her hands in front of her face and starting weeping tears of joy that just wouldn't stop. The emotions were mutual. Lara just couldn't believe that the two of them just whisked in and wihisked out again. They stayed for about an hour, engaging Lara in willing conversation. Then they proceeded to the Grand Place of Brussels, a world heritage sight to behold, before taking the train back to Paris around five. What a show. I was so happy to see Lara so happy.
After everybody had left, including her friend Liliana, who flies back to Madrid, all of her energy was pretty much gone. People see her while she is putting her best foot forward and conclude that she is not doing half as badly as I had made them believe before arriving. What they don't fully realize is how much effort it takes for Lara to keep up the level of alacrity and wit to which she feels her audience is entitled, coming from as far as they have come. Someone discussing French politics in an informed manner can't be anywhere close to death, or so the occasional visitors surmises. How wrong they might be to thinl that.
Until they would see her afterwards when her poor body slumps back into the big pillow and she just conks out from sheer exhaustion. But worth every single joule.
zondag 29 april 2012
Vital stats and visits
Sunday 29 April afternoon
On the face of it she is not doing badly, even if outward appearances deceive. Her pulse was 84, her pressure 9 over 4 (not abnormal for Lara) and her saturation 98%. No fever. She is still on 8 or 9 liters of oxygen per minute.
Yesterday she was having problems breathing. This was due to inadvertent behavior (someone planted a heavy heel on her oxygen tube, while someone else closed the door and squeezed the line shut). Structurally however, as we learned from a technician we had summoned to inspect the set-up, there was something wrong. The oxygen concentrator takes oxygen from the air in the house, filters it, concentrates it and pumps it to the face-mask of the patient. Oxygen from a bottle is 100% pure. But oxygen from a concentrator is maybe 91%. So 9 liters per minute is not the same; it depends where it comes from.
The other problem is that we had placed the machine in the hallway to spare Lara the constant drone. As a result there is a 12 meter long clear plastic tube connecting the machine to the mask, with an attendant loss of oxygen at every curl. By the time it reaches Lara, oxygen starting a 9 liters a minute has dwindled to 5 or 6 liters by the time it gets to her.
So then we rolled the machine from the hallway into the living room and put it next to the bed, and connected a six meter long tube. Also we gave her a new mask. And then she was happy.
This morning Lara received a call from Tia Higano, an old old friend of hers she hadn't spoken with since they were both around 14 years old. Tia has been a valuable intermediary between doctors at Saint Luke's in Brussels and the Hutchinson Cancer Center in Seattle where Tia is a Director.
The girls in the house had connived to send me out to the gym this morning and so I did, dutifully. Meanwhile my son Bouke had arrived for a surprise visit. He showed some videos on his cell phone of his daughter, Madelief, walking about the house tentatively. Lara thoroughly enjoyed it.
Janis left for California this morning and gave us an early call before turning in her local cell phone. Elisabetta and Liliana are flying home tomorrow morning Monday. They are making sure there will be enough food in the house for both of us.
On the face of it she is not doing badly, even if outward appearances deceive. Her pulse was 84, her pressure 9 over 4 (not abnormal for Lara) and her saturation 98%. No fever. She is still on 8 or 9 liters of oxygen per minute.
Yesterday she was having problems breathing. This was due to inadvertent behavior (someone planted a heavy heel on her oxygen tube, while someone else closed the door and squeezed the line shut). Structurally however, as we learned from a technician we had summoned to inspect the set-up, there was something wrong. The oxygen concentrator takes oxygen from the air in the house, filters it, concentrates it and pumps it to the face-mask of the patient. Oxygen from a bottle is 100% pure. But oxygen from a concentrator is maybe 91%. So 9 liters per minute is not the same; it depends where it comes from.
The other problem is that we had placed the machine in the hallway to spare Lara the constant drone. As a result there is a 12 meter long clear plastic tube connecting the machine to the mask, with an attendant loss of oxygen at every curl. By the time it reaches Lara, oxygen starting a 9 liters a minute has dwindled to 5 or 6 liters by the time it gets to her.
So then we rolled the machine from the hallway into the living room and put it next to the bed, and connected a six meter long tube. Also we gave her a new mask. And then she was happy.
This morning Lara received a call from Tia Higano, an old old friend of hers she hadn't spoken with since they were both around 14 years old. Tia has been a valuable intermediary between doctors at Saint Luke's in Brussels and the Hutchinson Cancer Center in Seattle where Tia is a Director.
The girls in the house had connived to send me out to the gym this morning and so I did, dutifully. Meanwhile my son Bouke had arrived for a surprise visit. He showed some videos on his cell phone of his daughter, Madelief, walking about the house tentatively. Lara thoroughly enjoyed it.
Janis left for California this morning and gave us an early call before turning in her local cell phone. Elisabetta and Liliana are flying home tomorrow morning Monday. They are making sure there will be enough food in the house for both of us.
Rear Guard
Sunday 29 April afternoon
Lara and I slept well together in the same room, different cods, and I managed to wake up twice at the precise moment she needed my help. We brought it off without a hitch, with assistance from the garde-malades.
Lara hasn't given up, make no mistake. She is still fighting as we would expect her too. "Give me anything that will make me better", she said this morning, whether it be food or medication. She insisted on a list of everything they are giving her with an explanation of what effect it was supposed to have on her.
Point is that the rest of us have kind of fallen into her trap. Take the distribution of her clothes, bags and jewelry. What other interpretation is there than that Lara was expecting an imminent demise? In actual fact, what probably drove her is that the distribution game was another manifestaion of her will to control things. (Have we ever known her any different?) She wanted to make sure that the process went off the way she wanted, down to the last detail. Also, she wanted to take the burden away from me of having to divvy up the spoils of her life afterwards, in a moment where sadness and grief would take a maximum toll on the one she loves most of all.
Similarly, the long parade of visitors filing by her bedside - in the hospital and even more so here at home - had the character of definitive goodbyes, of one last adieu. You extrapolate them and you find demise. The friends sitting by her side and stroking her hands, assumed the poise of a death wake, unwittingly preparing her for a place where she was not yet ready to depart to. She enjoyed the ministrations, as balm to her soul, but not at all the direction they were taking her. I am not dead yet, she reminded us.
For it doesn't mean that Lara is resigned to die - even if she might. She will do anything to stay alive and be together with her loved ones for as long as possible. True, she looks diminished in the big hospital bed. A shadow of what she once was. My eyes go over the photos of hers that adorn our walls, reminding me of more prosperous and happier times, and I just want to cry. A vivacious, blossoming, vibrant woman, while now, by contrast, her eyes lie deep in their sockets and her face is marked by abrasions from the other night. Her shoulders are nowhere near the athletic frame of the fine swimmer she was.The giant oxygen mask with the white plastic bellow hanging down from it, obscures most of her face and muffles her voice, weak as it has become already. Then again she still musters the twinkle in her eyes from time to time, or dishes out a sample of her morbid wit.
Yet, she may bounce back; we have seen it before. She certainly aspires to. We are giving her homeopathic products and pills that may enhance the formation of healthy cells. Even if they remind us of rearguard skirmishes, we are proud to fight at her side.
Lara and I slept well together in the same room, different cods, and I managed to wake up twice at the precise moment she needed my help. We brought it off without a hitch, with assistance from the garde-malades.
Lara hasn't given up, make no mistake. She is still fighting as we would expect her too. "Give me anything that will make me better", she said this morning, whether it be food or medication. She insisted on a list of everything they are giving her with an explanation of what effect it was supposed to have on her.
Point is that the rest of us have kind of fallen into her trap. Take the distribution of her clothes, bags and jewelry. What other interpretation is there than that Lara was expecting an imminent demise? In actual fact, what probably drove her is that the distribution game was another manifestaion of her will to control things. (Have we ever known her any different?) She wanted to make sure that the process went off the way she wanted, down to the last detail. Also, she wanted to take the burden away from me of having to divvy up the spoils of her life afterwards, in a moment where sadness and grief would take a maximum toll on the one she loves most of all.
Similarly, the long parade of visitors filing by her bedside - in the hospital and even more so here at home - had the character of definitive goodbyes, of one last adieu. You extrapolate them and you find demise. The friends sitting by her side and stroking her hands, assumed the poise of a death wake, unwittingly preparing her for a place where she was not yet ready to depart to. She enjoyed the ministrations, as balm to her soul, but not at all the direction they were taking her. I am not dead yet, she reminded us.
For it doesn't mean that Lara is resigned to die - even if she might. She will do anything to stay alive and be together with her loved ones for as long as possible. True, she looks diminished in the big hospital bed. A shadow of what she once was. My eyes go over the photos of hers that adorn our walls, reminding me of more prosperous and happier times, and I just want to cry. A vivacious, blossoming, vibrant woman, while now, by contrast, her eyes lie deep in their sockets and her face is marked by abrasions from the other night. Her shoulders are nowhere near the athletic frame of the fine swimmer she was.The giant oxygen mask with the white plastic bellow hanging down from it, obscures most of her face and muffles her voice, weak as it has become already. Then again she still musters the twinkle in her eyes from time to time, or dishes out a sample of her morbid wit.
Yet, she may bounce back; we have seen it before. She certainly aspires to. We are giving her homeopathic products and pills that may enhance the formation of healthy cells. Even if they remind us of rearguard skirmishes, we are proud to fight at her side.
zaterdag 28 april 2012
Parlor
Saturday 28 April late afternoon
Amidst problems regarding her oxygen supply - the most sensitive issue to Lara - I had to absent myself and visit a funeral parlor this afternoon, across the street from us. Funerailles Michel. The best in Brussels, says Helene de Merode.
James Joyce once wrote that "Mr Duffy lived a short distance from his body." I couldn't relate to Duffy any better than I did right now. My mind was in a strange way. There were good practical reasons for me to take this step, I know. You don't want to be caught by surprise at the worst possible moment when people around you, including doctors and civil authorities start asking questions. When somebody dies, there are consequences and you need to deal with them in accordance with the deceased's wishes. And the law. If you wish to disperse her ashes in a public place, like a lake in Switzerland, be discrete, the undertaker advised.
Still, sneaking out of the house was somehow tantamount to resignation. As if I were giving up hope that Lara's disease would ever turn around again. Woe betides him who extinguishes the light of hope - a masonic mantra I couldn't get out of my head. It felt a bit like betrayal, as if I were telling my loved-one that our life together would soon be over.
To be truthful: it will be. And I need to respect Lara's wishes as to how she wishes to end this earthly existence. The simplest of coffins, no ornaments, no ceremonies, no flowers no eulogies; hard on herself in death as she was in life. After four days I will receive her ashes in a metal urn, five or six kilograms of them. I have to make Lara sign an authorization today that her body is to be incinerated and that her ashes are to be turned over to me. Can I really bring myself to ask her that? Will she even be capable to sign? Does it get more awful than this?
Lara and I had a long talk afterwards, reminiscing some. At a certain moment I was able to steer the conversation to funeral arrangements, and do so in a fluent manner. She wants to be clad in a dress. She signed the document without blinking. "Let's get it over with", she said. The lady will never stop to amaze me; perhaps even into the next life.
Amidst problems regarding her oxygen supply - the most sensitive issue to Lara - I had to absent myself and visit a funeral parlor this afternoon, across the street from us. Funerailles Michel. The best in Brussels, says Helene de Merode.
James Joyce once wrote that "Mr Duffy lived a short distance from his body." I couldn't relate to Duffy any better than I did right now. My mind was in a strange way. There were good practical reasons for me to take this step, I know. You don't want to be caught by surprise at the worst possible moment when people around you, including doctors and civil authorities start asking questions. When somebody dies, there are consequences and you need to deal with them in accordance with the deceased's wishes. And the law. If you wish to disperse her ashes in a public place, like a lake in Switzerland, be discrete, the undertaker advised.
Still, sneaking out of the house was somehow tantamount to resignation. As if I were giving up hope that Lara's disease would ever turn around again. Woe betides him who extinguishes the light of hope - a masonic mantra I couldn't get out of my head. It felt a bit like betrayal, as if I were telling my loved-one that our life together would soon be over.
To be truthful: it will be. And I need to respect Lara's wishes as to how she wishes to end this earthly existence. The simplest of coffins, no ornaments, no ceremonies, no flowers no eulogies; hard on herself in death as she was in life. After four days I will receive her ashes in a metal urn, five or six kilograms of them. I have to make Lara sign an authorization today that her body is to be incinerated and that her ashes are to be turned over to me. Can I really bring myself to ask her that? Will she even be capable to sign? Does it get more awful than this?
Lara and I had a long talk afterwards, reminiscing some. At a certain moment I was able to steer the conversation to funeral arrangements, and do so in a fluent manner. She wants to be clad in a dress. She signed the document without blinking. "Let's get it over with", she said. The lady will never stop to amaze me; perhaps even into the next life.
Lost
Saturday 28 April
At age seven I lived with my family of five in a modest flat, with a room to myself. My bed sat diagionally across from the door, and at night I could find my way to the bathroom without even opening my eyes. One time, I stayed over a couple of nights at my grandparents house and tried, on automatic pilot, to follow the same route out of my room, walking in a direction diagonally across from my bed. Of course the lay-out was not the same as that of my own bedroom. I panicked and started crying, and my grandparents, having woken up, found me facing a dead corner without a door, in total confusion.
Something similar must have happened to Lara in the middle of the night. I was sleeping next to her on the couch, deeply. She must have slipped out of bed looking for the chaise percee in a place where she would expect it to be in her hospital room. In doing so, she must have gotten herself entangled in the oxygen line and the feederlines coming down from the Baxter. As I woke up, I found her totally disoriented; her right eyebrow and cheek abrased. She was obstinate in pursuing a course of action that made no sense, and chastizing me and the guarde-malades for not understanding what she was trying to achieve. We put everything back in order, cleaned her up, calmed her down and put her back to bed.
The nightnurse upped the dose of Tranxen and that put her to sleep in about ten minutes. We made her comfortable, talked to her softly, dressed her abrasions, even though we had no idea how exactly they had gotten there.
All she needed to do is call out my name and I would have helped her. But, independent minded as she is, she preferred to do things on her own.
So this morning she woke up exhausted, and, because of the Tranxen, not totally with it. Her eyes look befuddled. The nurses are busying with her as we speak. Right now (around 6:00PM) she looks exhausted and weak.
At age seven I lived with my family of five in a modest flat, with a room to myself. My bed sat diagionally across from the door, and at night I could find my way to the bathroom without even opening my eyes. One time, I stayed over a couple of nights at my grandparents house and tried, on automatic pilot, to follow the same route out of my room, walking in a direction diagonally across from my bed. Of course the lay-out was not the same as that of my own bedroom. I panicked and started crying, and my grandparents, having woken up, found me facing a dead corner without a door, in total confusion.
Something similar must have happened to Lara in the middle of the night. I was sleeping next to her on the couch, deeply. She must have slipped out of bed looking for the chaise percee in a place where she would expect it to be in her hospital room. In doing so, she must have gotten herself entangled in the oxygen line and the feederlines coming down from the Baxter. As I woke up, I found her totally disoriented; her right eyebrow and cheek abrased. She was obstinate in pursuing a course of action that made no sense, and chastizing me and the guarde-malades for not understanding what she was trying to achieve. We put everything back in order, cleaned her up, calmed her down and put her back to bed.
The nightnurse upped the dose of Tranxen and that put her to sleep in about ten minutes. We made her comfortable, talked to her softly, dressed her abrasions, even though we had no idea how exactly they had gotten there.
All she needed to do is call out my name and I would have helped her. But, independent minded as she is, she preferred to do things on her own.
So this morning she woke up exhausted, and, because of the Tranxen, not totally with it. Her eyes look befuddled. The nurses are busying with her as we speak. Right now (around 6:00PM) she looks exhausted and weak.
vrijdag 27 april 2012
Home Made Cooking
Friday 27 April
Two sturdy ambulance drivers picked Lara up at around 10:00AM, and manoeuvered her down with all the dexterity these people call their own. Riding the car with full sirenes ablaze was a first for me, I think. Within no time Lara was in a small chamber at the day clinic (hopital du jour) of Saint Luke's, hematology department. At 10:00AM she was hooked up to a batch of platelets; but then things started to slow down.
She was to receive two batches of red blood cells, but they came through at a snail's pace. Lara didn't absorb them very swiftly. In addition,without telling us, the nurses had cut off her access to morphine and tranquilizer to enhance access for the fresh red blood cells. So during the course of the day, Lara's breathing began to be more and more labored. She didn't want to tell me at first, then did anyway, and I got worried in turn. So I asked the nurse - at Lara's prompting - and indeed she explained. We insisted it was not a matter of trust, but of com-mu-ni-ca-tion. The nurse acknowledged and apologized.
This was another example of a jacobinian system of governance. They have the best of intentions but it is about you without you. We know what we are doing, don't ask too many questions, it will just hold us up.
We waited endlessly for an ambulance, and went back to the house at break-neck speed, weaving through Friday evening peak hour traffick.
Now she is back in her bed, eating a meal Andreina cooked for her last night. She gobbled it up. Elisabetta is cooking for the rest of us.
Two sturdy ambulance drivers picked Lara up at around 10:00AM, and manoeuvered her down with all the dexterity these people call their own. Riding the car with full sirenes ablaze was a first for me, I think. Within no time Lara was in a small chamber at the day clinic (hopital du jour) of Saint Luke's, hematology department. At 10:00AM she was hooked up to a batch of platelets; but then things started to slow down.
She was to receive two batches of red blood cells, but they came through at a snail's pace. Lara didn't absorb them very swiftly. In addition,without telling us, the nurses had cut off her access to morphine and tranquilizer to enhance access for the fresh red blood cells. So during the course of the day, Lara's breathing began to be more and more labored. She didn't want to tell me at first, then did anyway, and I got worried in turn. So I asked the nurse - at Lara's prompting - and indeed she explained. We insisted it was not a matter of trust, but of com-mu-ni-ca-tion. The nurse acknowledged and apologized.
This was another example of a jacobinian system of governance. They have the best of intentions but it is about you without you. We know what we are doing, don't ask too many questions, it will just hold us up.
We waited endlessly for an ambulance, and went back to the house at break-neck speed, weaving through Friday evening peak hour traffick.
Now she is back in her bed, eating a meal Andreina cooked for her last night. She gobbled it up. Elisabetta is cooking for the rest of us.
Haywire
Thursday 26 April towards midnight
I had to escape tonight. I hadn't been out the door all day and fresh air was needed. Also, I was the only male among at least six women and felt totally outwitted, and at least outnumbered. So I opted for a Soderberg movie wih Michael Douglas, Michael Fassbinder and Antonio Banderas: "Haywire". Not great but entertaining. Janis offered to keep me company and we had a good talk over lovely wokked food.
As I got home by 9:30PM, they had just started cooking Lara dinner. I was much distressed. This day was dragging on much too long. Not good for Lara, never mind how much she may have loved the company.
I just can't tear myself away from her at night. The very thought that I will not be near her for all the hours of sleep is hard for me to accept. When she was in the hospital, our separation was inevitable. Under the same roof it becomes almost unbearable. As her condition will deteriorate - and it will - being apart becomes hazardous. For I want to be there when she leaves me. The idea that she would escape, with me asleep in our own bed, would not only wound me; it would haunt me forever.
So I stroked her stubbly pate one last time and kiss her lightly on the forehead. Good night my sweet. Tomorrow is going to be a very busy day for you. Get some rest.
I will have to bring some structure to Lara's days. There are altogether to many well-meaning friends around, plus the garde-malades, plus the nurses, plus me. This is too taxing for Lara.
I had to escape tonight. I hadn't been out the door all day and fresh air was needed. Also, I was the only male among at least six women and felt totally outwitted, and at least outnumbered. So I opted for a Soderberg movie wih Michael Douglas, Michael Fassbinder and Antonio Banderas: "Haywire". Not great but entertaining. Janis offered to keep me company and we had a good talk over lovely wokked food.
As I got home by 9:30PM, they had just started cooking Lara dinner. I was much distressed. This day was dragging on much too long. Not good for Lara, never mind how much she may have loved the company.
I just can't tear myself away from her at night. The very thought that I will not be near her for all the hours of sleep is hard for me to accept. When she was in the hospital, our separation was inevitable. Under the same roof it becomes almost unbearable. As her condition will deteriorate - and it will - being apart becomes hazardous. For I want to be there when she leaves me. The idea that she would escape, with me asleep in our own bed, would not only wound me; it would haunt me forever.
So I stroked her stubbly pate one last time and kiss her lightly on the forehead. Good night my sweet. Tomorrow is going to be a very busy day for you. Get some rest.
I will have to bring some structure to Lara's days. There are altogether to many well-meaning friends around, plus the garde-malades, plus the nurses, plus me. This is too taxing for Lara.
donderdag 26 april 2012
Video
Thursday 26 April
Yesterday, I forgot to tell you, after Dr Schroyens had left, there was a lull in the day and no visitors were around. I spend some time alone with Lara and thought this was a good moment to roll out the big gun.
I had been made aware that the "kids" had put a video together with individual and collective messages from nieces, nephews, siblings, in-laws, and assorted parents. People had made contributions from as far away as New Zealand. Brittney put them all together. A wonderful collage of familial support from overseas. Lara was crying through most of the 17 minute show.
Me too, actually. What a family.
Lara was touched by learning how many family members had actually felt inspired by her and how much of a trail blazer she had been, especially to women in the family.
Yesterday, I forgot to tell you, after Dr Schroyens had left, there was a lull in the day and no visitors were around. I spend some time alone with Lara and thought this was a good moment to roll out the big gun.
I had been made aware that the "kids" had put a video together with individual and collective messages from nieces, nephews, siblings, in-laws, and assorted parents. People had made contributions from as far away as New Zealand. Brittney put them all together. A wonderful collage of familial support from overseas. Lara was crying through most of the 17 minute show.
Me too, actually. What a family.
Lara was touched by learning how many family members had actually felt inspired by her and how much of a trail blazer she had been, especially to women in the family.
Asphyxiation
Thursday 26 April afternoon
"I don't fear death; I am afraid of dying." Ideally, she would wish to go a a moment of her choosing, surrounded by dear ones, in style, through a procedure that would be quick and instant. Such a demise would be hard to bring about legally in Belgium, given the circumstances. Whatius clear as a minimum condition, though, is that she wishes under no circumstances to die as a result of asphyxiation. It is not only a recurrent theme in conversations with us, with doctors and nurses, but it is a current source of anxiety. A five miligram morphine pump takes the edge of the anxiety, but it still resurges from time to time.
Right now she she is reclining in het pillow, sitting up, quietly breathing with Janis and Elisabetta stroking her hands on either side, and engaging her in soft exchanges.
"I don't fear death; I am afraid of dying." Ideally, she would wish to go a a moment of her choosing, surrounded by dear ones, in style, through a procedure that would be quick and instant. Such a demise would be hard to bring about legally in Belgium, given the circumstances. Whatius clear as a minimum condition, though, is that she wishes under no circumstances to die as a result of asphyxiation. It is not only a recurrent theme in conversations with us, with doctors and nurses, but it is a current source of anxiety. A five miligram morphine pump takes the edge of the anxiety, but it still resurges from time to time.
Right now she she is reclining in het pillow, sitting up, quietly breathing with Janis and Elisabetta stroking her hands on either side, and engaging her in soft exchanges.
Mini-clinic
Thursday 26 April noon
Lara has passed her night serenely and caught up on some well-needed sleep. This morning her compelxion was fresher and more authentic than I had it seen in months. Rosy cheeks, a good color overall, normal temperature.
Various nurses and guardes-malades came buy to do their thing or take over from one another. Pharmacy Sintejan, up avenue Louise, came by to deliver giga-quantities of medication and other supplies, to be followed by a similar delivery this afternoon. We are turning the living and dining room area into a veritable clinic. Dr Willemot, our GP, who stopped by around 11:00AM, was duly impressed.
Janis is back in circulation after some flight-related intestinal problems and is now tending to her friend. Her Italien friend Andreina called to ask abou what dish she should bring her for lunch. Helene de Merode and Jacqueline Moens (herself barely risen from a hospital stay and heavy surgery) came in for a brief surprise visit. Other visitors are due to come in this afternoon; various phonecalls came from people farther away, or those who cannot travel.
Lara has passed her night serenely and caught up on some well-needed sleep. This morning her compelxion was fresher and more authentic than I had it seen in months. Rosy cheeks, a good color overall, normal temperature.
Various nurses and guardes-malades came buy to do their thing or take over from one another. Pharmacy Sintejan, up avenue Louise, came by to deliver giga-quantities of medication and other supplies, to be followed by a similar delivery this afternoon. We are turning the living and dining room area into a veritable clinic. Dr Willemot, our GP, who stopped by around 11:00AM, was duly impressed.
Janis is back in circulation after some flight-related intestinal problems and is now tending to her friend. Her Italien friend Andreina called to ask abou what dish she should bring her for lunch. Helene de Merode and Jacqueline Moens (herself barely risen from a hospital stay and heavy surgery) came in for a brief surprise visit. Other visitors are due to come in this afternoon; various phonecalls came from people farther away, or those who cannot travel.
woensdag 25 april 2012
Guitar
Wednesday 25 April dinner time
It has been a serene day for Lara. Most of the morning, quiet in itself, was taken up by the modest presence of Dr Schroyens, who had coming riding in from Ghent, about fifty kilometers West of here. Schroyens is the leading expert in homeopathy in Belgium and, through the help of Jewish friends, had consented to rearrange his busy schedule and make the trip to Brussels. The conversation he had with Lara was extraordinary compared to what any conventional doctor would have been talking about. "What makes you angry?", for example. The meeting (with me as an assistant), lasted two hours.
This evening, he called to inform that, in accordance with homeopathic medicine, he was going to prescribe one single drug only, in this case to be taken one time only: Staphysagria. The little pills were delivered around 8:45PM by special courier from Antwerp. Lara is to take the medicine in a spoonsize dose, one time only. In addition we will (at ourt own initiative) keep feeding her Glutiathone, brought by Elisabetta from New York. Friday night Schroyens will evaluate the effect of the medication on Lara and take it from there.
Today marked the end of the distribution process whereby Lara assigned all of her jewelry, shoes, clothes and bags to various friends and relatives. She had taken the preaution of first drawing up a list of people she wanted to give something to, so as not to run out of items before she got to the bottom of the list.
We had a wonderful dinner, prepared by Elisabetta and Liliana. Four people seated at the table facing Lara, who sat up in bed. But it left her absolutely exhausted. While the dinner was under way in the kitchen, Jeffrey serenaded his sister with a song he had written for her, and had borrowed Lara's guitar for acccompinament. It was very mellow and touching. I had given Lara the guitar for her birthday once, while in Stockholm, but she had never found the occasion to get serious on it again.
Various bouquets of flowers were brought in, one from Prince Constantine of Orange, with whom Lara had worked. She felt flattered.
Jeffrey will be leaving tomorrow, Thursday, but will stop by the say a final farewell to his old sister. These must be difficult moments .I push the thoughts away as much as I can and try not to figure when my own time wold come for me to say goodbye to her; to know that whatver you say or do would be the very last time. Quite apart from what you wish to say, it is the very thought that repetition or correction is not in the offing. I shudder to think.
It has been a serene day for Lara. Most of the morning, quiet in itself, was taken up by the modest presence of Dr Schroyens, who had coming riding in from Ghent, about fifty kilometers West of here. Schroyens is the leading expert in homeopathy in Belgium and, through the help of Jewish friends, had consented to rearrange his busy schedule and make the trip to Brussels. The conversation he had with Lara was extraordinary compared to what any conventional doctor would have been talking about. "What makes you angry?", for example. The meeting (with me as an assistant), lasted two hours.
This evening, he called to inform that, in accordance with homeopathic medicine, he was going to prescribe one single drug only, in this case to be taken one time only: Staphysagria. The little pills were delivered around 8:45PM by special courier from Antwerp. Lara is to take the medicine in a spoonsize dose, one time only. In addition we will (at ourt own initiative) keep feeding her Glutiathone, brought by Elisabetta from New York. Friday night Schroyens will evaluate the effect of the medication on Lara and take it from there.
Today marked the end of the distribution process whereby Lara assigned all of her jewelry, shoes, clothes and bags to various friends and relatives. She had taken the preaution of first drawing up a list of people she wanted to give something to, so as not to run out of items before she got to the bottom of the list.
We had a wonderful dinner, prepared by Elisabetta and Liliana. Four people seated at the table facing Lara, who sat up in bed. But it left her absolutely exhausted. While the dinner was under way in the kitchen, Jeffrey serenaded his sister with a song he had written for her, and had borrowed Lara's guitar for acccompinament. It was very mellow and touching. I had given Lara the guitar for her birthday once, while in Stockholm, but she had never found the occasion to get serious on it again.
Various bouquets of flowers were brought in, one from Prince Constantine of Orange, with whom Lara had worked. She felt flattered.
Jeffrey will be leaving tomorrow, Thursday, but will stop by the say a final farewell to his old sister. These must be difficult moments .I push the thoughts away as much as I can and try not to figure when my own time wold come for me to say goodbye to her; to know that whatver you say or do would be the very last time. Quite apart from what you wish to say, it is the very thought that repetition or correction is not in the offing. I shudder to think.
Rentree
Tuesday 24 April late evening
By the time Lara was delivered back home, at around 11:00AM, a lot of preparatory work had taken place. A nurse was i place plus two home care workers, the new bedlinens were back from the laundry, medications were in place and several more oxygen bottles had been delivered, plus a wonderful bouquet of roses from an association called "The Red Rose" in The Hague, of which I am a member.
Lara was put rightawy from the chair in which she was brought up from te ambulance, into her new hospital bed and all the familiar contraptions were put into place around her. She was clearly exhausted but delighted at the same time.
By now seven cannisters of liquid oxygen were pile up behind Lara's bed, each containing enough gas to keep Lara afloat fro about seven hours. The logistics of continual supplementation of cannisters were staggering. So the compqany itself suggested we swith to a oxygen concentrator (such as the one we already have in the house as from last year, but with a higher debit). The machine, the size of a large carry-on, sucks oxygen out ambiant air, filters it and pumps it back through the nozzle, continuously, without replenishment. The only thing to do is fill up the humidifier every few days or so.
Gradually, the most care takers went their separate ways, while friends and siblings started to file in: Jeff, Elisbaetta, Janis and Liliana. The were all very huggy and close to Lara, and she was probably heartened by the outpoor of so much love and affection.
At Lara's initiative, the party started turning into a spoils distribution, covering jewelry, clothong, shoes and handbags. Books were kept as to who got what. The process is not over yet, but Lara was too exhausted to continue.
Toninght, at Lara's insistence I will push the couch up against her bed, crank the bed to the lowest position and sleep side by side, like we ought to for thirty years more...
By the time Lara was delivered back home, at around 11:00AM, a lot of preparatory work had taken place. A nurse was i place plus two home care workers, the new bedlinens were back from the laundry, medications were in place and several more oxygen bottles had been delivered, plus a wonderful bouquet of roses from an association called "The Red Rose" in The Hague, of which I am a member.
Lara was put rightawy from the chair in which she was brought up from te ambulance, into her new hospital bed and all the familiar contraptions were put into place around her. She was clearly exhausted but delighted at the same time.
By now seven cannisters of liquid oxygen were pile up behind Lara's bed, each containing enough gas to keep Lara afloat fro about seven hours. The logistics of continual supplementation of cannisters were staggering. So the compqany itself suggested we swith to a oxygen concentrator (such as the one we already have in the house as from last year, but with a higher debit). The machine, the size of a large carry-on, sucks oxygen out ambiant air, filters it and pumps it back through the nozzle, continuously, without replenishment. The only thing to do is fill up the humidifier every few days or so.
Gradually, the most care takers went their separate ways, while friends and siblings started to file in: Jeff, Elisbaetta, Janis and Liliana. The were all very huggy and close to Lara, and she was probably heartened by the outpoor of so much love and affection.
At Lara's initiative, the party started turning into a spoils distribution, covering jewelry, clothong, shoes and handbags. Books were kept as to who got what. The process is not over yet, but Lara was too exhausted to continue.
Toninght, at Lara's insistence I will push the couch up against her bed, crank the bed to the lowest position and sleep side by side, like we ought to for thirty years more...
dinsdag 24 april 2012
Cordon Sanitaire
Monday 23 April late evening
It was a hectic day and I am really exhausted. This morning, a company brought in an automated hospital bed, plus other accessories to accomodate home car for an incapacitated patient. This evening, a different company brought in four large cylinders, each filled with 4200 liters of liquid oxygen; four more are to follow tomorrow. This afternoon and in several telephone calls, I had to make sure all other arrangements were firmly in place and well-coordinated: transportation by ambulance, particulars about medical and personal care. I had to go out and buy single sheets that would fit the extraneaous bed (two sets) and have them washed and ironed by a laundromat.
Meanwhile Louise Doswald-beck, a close friend of Lara's from her ICRC-days, arrived at the hosue at 9:00AM straight from Gneva, while a few hours later, Janis Dolnick arrived at the house, from California. We all went to the hospital around 2:30PM. We found Jeff there, who had just wound up a good long stay with his sister.
What we found out was that while Jeff was in there, the hematology ward had decided to surround Lara with a cordon sanitaire or a security perimeter, for the lab had found a resistant bacteria in her (much the same way as last year during her third chemo). She was being isolated to protect the rest of the hospital from her. Since Jeff, unaware of what went on literally behind his back, was not wearing protective gear, he was not allowed to stay on the floor and could he please make himself scarce. The rest of us (Louise, Janis and I) all had to don coat, gloves and masques before we went in.
Louise and Janis had separate talks with Lara, and for Lara this was the first time in eight years that she consciously laid eyes on Janis. Meaningful encounters were had by all. I didn't actually get any alone-time with my wife, but I am betting on her home-coming.
I was running late for a cardiology appointment, scheduled for 6:00PM, but the good news is that I received a clean bill of health. "I like the sound of that", said Lara when I phoned her about the results (at her insistence).
She herself had changed oxygen gear. regular patients who receive oxygen receive to little nozzles up their nostrils (they call it the lunettes, or the spectacles). Instead, she now wears a plastic mask or cap with a plastic bag hang underneath which allows her to inhale hydrogenated air through her mouth and nose, as she breathes. The bad thing is she is terrified of masks; the good thing is she has beterr oxygen uptake in her bloodstream.
But the running theme in all her anxiety is suffocation for lack of oxygen. She wanted to make sure (and asked me to call our GP about it), that a morphine pump does not cause asphyxiation. the answer was reassuring: no, on the contrary, it will allow you to breathe better. That word was all she needed.
It was a hectic day and I am really exhausted. This morning, a company brought in an automated hospital bed, plus other accessories to accomodate home car for an incapacitated patient. This evening, a different company brought in four large cylinders, each filled with 4200 liters of liquid oxygen; four more are to follow tomorrow. This afternoon and in several telephone calls, I had to make sure all other arrangements were firmly in place and well-coordinated: transportation by ambulance, particulars about medical and personal care. I had to go out and buy single sheets that would fit the extraneaous bed (two sets) and have them washed and ironed by a laundromat.
Meanwhile Louise Doswald-beck, a close friend of Lara's from her ICRC-days, arrived at the hosue at 9:00AM straight from Gneva, while a few hours later, Janis Dolnick arrived at the house, from California. We all went to the hospital around 2:30PM. We found Jeff there, who had just wound up a good long stay with his sister.
What we found out was that while Jeff was in there, the hematology ward had decided to surround Lara with a cordon sanitaire or a security perimeter, for the lab had found a resistant bacteria in her (much the same way as last year during her third chemo). She was being isolated to protect the rest of the hospital from her. Since Jeff, unaware of what went on literally behind his back, was not wearing protective gear, he was not allowed to stay on the floor and could he please make himself scarce. The rest of us (Louise, Janis and I) all had to don coat, gloves and masques before we went in.
Louise and Janis had separate talks with Lara, and for Lara this was the first time in eight years that she consciously laid eyes on Janis. Meaningful encounters were had by all. I didn't actually get any alone-time with my wife, but I am betting on her home-coming.
I was running late for a cardiology appointment, scheduled for 6:00PM, but the good news is that I received a clean bill of health. "I like the sound of that", said Lara when I phoned her about the results (at her insistence).
She herself had changed oxygen gear. regular patients who receive oxygen receive to little nozzles up their nostrils (they call it the lunettes, or the spectacles). Instead, she now wears a plastic mask or cap with a plastic bag hang underneath which allows her to inhale hydrogenated air through her mouth and nose, as she breathes. The bad thing is she is terrified of masks; the good thing is she has beterr oxygen uptake in her bloodstream.
But the running theme in all her anxiety is suffocation for lack of oxygen. She wanted to make sure (and asked me to call our GP about it), that a morphine pump does not cause asphyxiation. the answer was reassuring: no, on the contrary, it will allow you to breathe better. That word was all she needed.
zondag 22 april 2012
Spoils
Sunday 22 April evening
After a nice long visit by Liliana - where both of the ladies dozed off from time to time - Lara and I took time to be together for a few hours. Conversation is difficult, for she has to reach for every breath. But we communicate and I second-guess her quite a bit. One of the things we talk about is how to pass on the spoils of her life: handbags and jewelry and the like. We made a short list of what to whom, but stopped after a few items. It was exhausting, but she will ponder the question and revert. Meanwhile we stay close. Even when friends are around, Lara taps the bed, motioning for me to come and sit beside her. It comforts her.
Lara is now on Tranxene, 5 mg of morphine, plus Meronem (antibiotic) and Novalgine against the fever. She is off Ambizole and Xanax. From time to time she goes into a panic about lack of oxygen and the frightful prospect of death by asphyxiation, her ultimate nightmare. We hold hands a lot, it reassures her.
Patricia and her husband John Telford come visit, plus Fedde Groot from Amsterdam, all old comrades from the refugee camps in Honduras in the late eighties. The Telford kids are there as well. They all go in separately and have a one on one, and say their farewells. My sister Hanneke and her husband did the same. So did Tanya and Gordon, who are flying back to the West Coast tomorrow.
It's rough on both sides. All know that this is really it. If they choose the wording "Adieu" to say farewell, then that is what it really may amount to. It grinds me down and for Lara it must be very taxing. But apart from a few anxiety attacks, when she cannot get enough air, she is serene, alert, witty and amzes her guest by remembering facts and names from 25 years ago.
I play traffic cop among the rows of visitors. Tomorrow will be no different. Jeffrey arrived tonight (with a working cell phone), Janis Dolnick will be there tomorrow (flying in from San Francisco as we speak) and Louise Doswald-beck who will have breakfast with me at the house having arrived from Geneva. Also, in the course of the day, the bandagiste will make the hardware delivery preparing fro Lara's return at the house.
After a nice long visit by Liliana - where both of the ladies dozed off from time to time - Lara and I took time to be together for a few hours. Conversation is difficult, for she has to reach for every breath. But we communicate and I second-guess her quite a bit. One of the things we talk about is how to pass on the spoils of her life: handbags and jewelry and the like. We made a short list of what to whom, but stopped after a few items. It was exhausting, but she will ponder the question and revert. Meanwhile we stay close. Even when friends are around, Lara taps the bed, motioning for me to come and sit beside her. It comforts her.
Lara is now on Tranxene, 5 mg of morphine, plus Meronem (antibiotic) and Novalgine against the fever. She is off Ambizole and Xanax. From time to time she goes into a panic about lack of oxygen and the frightful prospect of death by asphyxiation, her ultimate nightmare. We hold hands a lot, it reassures her.
Patricia and her husband John Telford come visit, plus Fedde Groot from Amsterdam, all old comrades from the refugee camps in Honduras in the late eighties. The Telford kids are there as well. They all go in separately and have a one on one, and say their farewells. My sister Hanneke and her husband did the same. So did Tanya and Gordon, who are flying back to the West Coast tomorrow.
It's rough on both sides. All know that this is really it. If they choose the wording "Adieu" to say farewell, then that is what it really may amount to. It grinds me down and for Lara it must be very taxing. But apart from a few anxiety attacks, when she cannot get enough air, she is serene, alert, witty and amzes her guest by remembering facts and names from 25 years ago.
I play traffic cop among the rows of visitors. Tomorrow will be no different. Jeffrey arrived tonight (with a working cell phone), Janis Dolnick will be there tomorrow (flying in from San Francisco as we speak) and Louise Doswald-beck who will have breakfast with me at the house having arrived from Geneva. Also, in the course of the day, the bandagiste will make the hardware delivery preparing fro Lara's return at the house.
Breakfast
Sunday 22 April morning
Lara is getting gradually worse, but still very much OK mentally. Lucid but with her breathing constricted. Talking is a laborious activity to her, worse than yesterday. It is hard to understand her over the phone. She is headed where she doesn't want to be. Lara would not appreciate if I said this, but when I think back to the time we both saw her mom at Xmass 2010, in the nursing home, I see the resemblance beween mother and daughter facicng dire circumstances..
She told me she had slept "a little" and was having some breakfast as we spoke. She wanted to go over today's visitors programme with me so she would know what to look forward to. We got it all figured out, making sure we would have sufficient quality time together. This is not going to last very long from the looks of her. But then, you never know.
Lara is getting gradually worse, but still very much OK mentally. Lucid but with her breathing constricted. Talking is a laborious activity to her, worse than yesterday. It is hard to understand her over the phone. She is headed where she doesn't want to be. Lara would not appreciate if I said this, but when I think back to the time we both saw her mom at Xmass 2010, in the nursing home, I see the resemblance beween mother and daughter facicng dire circumstances..
She told me she had slept "a little" and was having some breakfast as we spoke. She wanted to go over today's visitors programme with me so she would know what to look forward to. We got it all figured out, making sure we would have sufficient quality time together. This is not going to last very long from the looks of her. But then, you never know.
Out of Breath
Saturday 21 April midnight
Today was an intense day for Lara. A host of friends and relatives passed by her hospital bed with all the attendant emotions that such visits carry, given the circumstances. First there was Liliana, who had flown in from Madrid. Followed by her friend Andreina and her husband, and then my kids. Bouke and Merel went in one by one. Their one-year old daughter Madelief (Daisy) looked in through the window in the inner door of Lara's room, and her grandmother waved enthusiastically with both arms, as soon as she spotted the little girl.
Then there were my daughter Lot and her husband, Kai, with our grand-daughter Yasmin - who likewise peeked in through the window (much more curious, at four and a half). Yasmin had found the perfect solution to Lara's breathing problem: Oma should use my cough potion, that will cure her.
The children all took turns saying their goodbyes, and Lara (to the extent I was privy to their conversations) had a kind and wise word to say to each of them. To Merel she confided: I would have wished to be a grand-mother until I was old and decrepit, baking cookies and cooking Mexican food. To one of the other children she said she had looked so much forward to taking up swimming again by this summer, the great passion in her life. Was that too much to ask? There were tears on both sides.
Then I had some quality time with Lara for about an hour and a half, until her brother Gordon arrived. I left them alone for about forty-five minutes and then rejoined them. I had fixed Lara some food we brought in from outside, for she only had some cornflakes and milk that morning. She actually ate an entire portion of it, plus a cup of Haagen-Dazs icecream.
At around eight, we said our goodbyes and left to get some dinner ourselves, meanwhile joined by Tanya (at Bleu sur Toi). As we were leaving the restaurant, Lara called. She had trouble breathing, and she couldn't locate the panic button to summon the nurse. I called the nurse, who explained after looking into Lara straighaway.
Lara's breathing is steadily deteriorating because of the ongoing lung infection. We had noticed this ourselves over the last few days. This afternoon she was getting 10 liters of oxygen per minute, while her saturation was down to 90. (That is about the maxium each way.) She coughs more and more. (Pain she doesn't have.) This decline is going to continue but nobody knows how fast or for how long. It depends. Normally, as part of palliative care, Lara would receive a morphine pump. That would help her relax and improve her breathing as a result. But Lara refuses morphine for the time being as it clouds the mind. As time passes, she will find that morphine is inevitable. The only alternative would be intubation, which doesn't make sense for someone who is terminal and doesn't want to be put under. Intubation would entail sedation, and then she would end up where she doesn't want to go in the first place.
I offered to come over immediately, and Gordon and Tanya said they would join. The nurse had asked Lara, and Lara declined. There was no need. The nurse has my mobile number and promised to alert me should anything dramatic happen.
I don't want my Lara to die on her own, without her sweetie, and certainly I don't want her to die by lack of breath, her great fear.
Today was an intense day for Lara. A host of friends and relatives passed by her hospital bed with all the attendant emotions that such visits carry, given the circumstances. First there was Liliana, who had flown in from Madrid. Followed by her friend Andreina and her husband, and then my kids. Bouke and Merel went in one by one. Their one-year old daughter Madelief (Daisy) looked in through the window in the inner door of Lara's room, and her grandmother waved enthusiastically with both arms, as soon as she spotted the little girl.
Then there were my daughter Lot and her husband, Kai, with our grand-daughter Yasmin - who likewise peeked in through the window (much more curious, at four and a half). Yasmin had found the perfect solution to Lara's breathing problem: Oma should use my cough potion, that will cure her.
The children all took turns saying their goodbyes, and Lara (to the extent I was privy to their conversations) had a kind and wise word to say to each of them. To Merel she confided: I would have wished to be a grand-mother until I was old and decrepit, baking cookies and cooking Mexican food. To one of the other children she said she had looked so much forward to taking up swimming again by this summer, the great passion in her life. Was that too much to ask? There were tears on both sides.
Then I had some quality time with Lara for about an hour and a half, until her brother Gordon arrived. I left them alone for about forty-five minutes and then rejoined them. I had fixed Lara some food we brought in from outside, for she only had some cornflakes and milk that morning. She actually ate an entire portion of it, plus a cup of Haagen-Dazs icecream.
At around eight, we said our goodbyes and left to get some dinner ourselves, meanwhile joined by Tanya (at Bleu sur Toi). As we were leaving the restaurant, Lara called. She had trouble breathing, and she couldn't locate the panic button to summon the nurse. I called the nurse, who explained after looking into Lara straighaway.
Lara's breathing is steadily deteriorating because of the ongoing lung infection. We had noticed this ourselves over the last few days. This afternoon she was getting 10 liters of oxygen per minute, while her saturation was down to 90. (That is about the maxium each way.) She coughs more and more. (Pain she doesn't have.) This decline is going to continue but nobody knows how fast or for how long. It depends. Normally, as part of palliative care, Lara would receive a morphine pump. That would help her relax and improve her breathing as a result. But Lara refuses morphine for the time being as it clouds the mind. As time passes, she will find that morphine is inevitable. The only alternative would be intubation, which doesn't make sense for someone who is terminal and doesn't want to be put under. Intubation would entail sedation, and then she would end up where she doesn't want to go in the first place.
I offered to come over immediately, and Gordon and Tanya said they would join. The nurse had asked Lara, and Lara declined. There was no need. The nurse has my mobile number and promised to alert me should anything dramatic happen.
I don't want my Lara to die on her own, without her sweetie, and certainly I don't want her to die by lack of breath, her great fear.
vrijdag 20 april 2012
To Lose
Friday 20 April late evening
"I am not going to lose Toine. Toine is going to lose me." A few days ago, she had already told me, in French, that I was going to lose her. Tu vas me perdre. Now she added the second half of the equation: she was not going to lose me. But before that happens she insists on returning home. She refuses to die in the hospital, even though she now has a room to herself.
This morning I called around to make arrangements for Lara's home coming. Our own GP, Isabelle Willemot, will take care of Lara and visit her once every day. Three nurses will take turns checking in on Lara during the day. A volunteer will be in the house 24/7 to help manage the household. A bandagiste will deliver equipment on Monday, such as an automated hospital bed, and various other items. We expect Lara to arrive on Tuesday.
Problem is that three times a week she needs transfusion of blood products and those can only take place in the hospital, so transportation by ambulance back 'n forth is required. Lara knows it but is willing to pay that price.
This was a rough day for her. I picked up Gordon and Tanya at the Sheraton and drove them to the hospital. Gordon went up first. later we were there the three of us. Already then she announced she felt herself getting weaker, her eyes were hollow, and she had to take a breath between every two syllables. Still her mind remained clear, she didn't miss a beat and she even managed to crack a joke. We let her sleep for an hour and a half and then went back for a little time extra.
At around 6:45PM Patricia Telford arrived, having travelled up by train from the South of France. Her children were there as well: Robert flew in from Ireland and Tania from England. They stayed until 8:30PM. I called Lara at 9:00PM and she wanted to know how we had liked the Vietnamese restaurant, La Tour d'Argent. She had always wanted to go there, but we had never gotten around to it. You want to go there together, I asked? Let's not get overboard , she said.
By that time Lara was totally waisted. Tomorrow more visitors have announed themselves. People will be flying in from Spain (Liliana), California (Janis and Jeff), New York (Elisabetta, Greta) and Geneva (Louise) and more are expected. I shall have to marshall the schedule rigorously to protect Lara. Also, she and I need lots of quality time together.
"I am not going to lose Toine. Toine is going to lose me." A few days ago, she had already told me, in French, that I was going to lose her. Tu vas me perdre. Now she added the second half of the equation: she was not going to lose me. But before that happens she insists on returning home. She refuses to die in the hospital, even though she now has a room to herself.
This morning I called around to make arrangements for Lara's home coming. Our own GP, Isabelle Willemot, will take care of Lara and visit her once every day. Three nurses will take turns checking in on Lara during the day. A volunteer will be in the house 24/7 to help manage the household. A bandagiste will deliver equipment on Monday, such as an automated hospital bed, and various other items. We expect Lara to arrive on Tuesday.
Problem is that three times a week she needs transfusion of blood products and those can only take place in the hospital, so transportation by ambulance back 'n forth is required. Lara knows it but is willing to pay that price.
This was a rough day for her. I picked up Gordon and Tanya at the Sheraton and drove them to the hospital. Gordon went up first. later we were there the three of us. Already then she announced she felt herself getting weaker, her eyes were hollow, and she had to take a breath between every two syllables. Still her mind remained clear, she didn't miss a beat and she even managed to crack a joke. We let her sleep for an hour and a half and then went back for a little time extra.
At around 6:45PM Patricia Telford arrived, having travelled up by train from the South of France. Her children were there as well: Robert flew in from Ireland and Tania from England. They stayed until 8:30PM. I called Lara at 9:00PM and she wanted to know how we had liked the Vietnamese restaurant, La Tour d'Argent. She had always wanted to go there, but we had never gotten around to it. You want to go there together, I asked? Let's not get overboard , she said.
By that time Lara was totally waisted. Tomorrow more visitors have announed themselves. People will be flying in from Spain (Liliana), California (Janis and Jeff), New York (Elisabetta, Greta) and Geneva (Louise) and more are expected. I shall have to marshall the schedule rigorously to protect Lara. Also, she and I need lots of quality time together.
donderdag 19 april 2012
Testament
Thursday 19 April late evening
No medical particulars to report except that Lara is getting physically weaker. She slips into sleep in the middle of writing an SMS (at least she does write one) or of a conversation. Fever peaks were less severe due too extra medication. Her neutrophils start coming back up (at 33) but of course so do the bad cells.
I am negotiating home care for Lara, and this construct may be in place by Tuesday next week. More about that later.
Gordon, Lara's brother (older by two years) and his wife Tanya flew in from California and visited Lara to her delight. Other family members and lots of friends are planning trips to come in and see her - one last time perhaps, I add.
Lara signed her last will and testament in her hospital bed, feeling relieved after she had done so.
No medical particulars to report except that Lara is getting physically weaker. She slips into sleep in the middle of writing an SMS (at least she does write one) or of a conversation. Fever peaks were less severe due too extra medication. Her neutrophils start coming back up (at 33) but of course so do the bad cells.
I am negotiating home care for Lara, and this construct may be in place by Tuesday next week. More about that later.
Gordon, Lara's brother (older by two years) and his wife Tanya flew in from California and visited Lara to her delight. Other family members and lots of friends are planning trips to come in and see her - one last time perhaps, I add.
Lara signed her last will and testament in her hospital bed, feeling relieved after she had done so.
Rainbow
Thursday 19 April noon
Lara has told me the story many times.
When her father, Howard, was dying, his wife, Connie, tried to get the children out of the house and create some quiet space for their father and stepfather to pass away peacefully at home. Connie stayed behind and so did Jeffrey, Lara's younger brother. The rest of the kids, some more reluctantly than others, went for a ride along the coast in the area. They made it to the San Francisco Zoo.
At a certain moment, on the way back, they saw a beautiful double rainbow and stopped to admire it. Exceptionally it sat over the ocean. Lara knew right then - and perhaps the others as well - that Howard had died. He had indeed, as they found out once back at the house. Later it turned out that their sister Christine, vacationing in Hawaii, had seen a rainbow at exactly the same time. Ever since, each time we saw a rainbow, Lara would exclaim: "Hi, Howard!", with true affection in her voice.
Twice over the past several days, looking out of her hospital window, against the afternoon sky, we saw a magnificent rainbow. Significantly, they were double ones! So, again, immediately our thoughts went to Lara's father (I never knew him myself, one of Lara's regrets in life). It is odd to say, but I had the distinct feeling that her dad was beckoning her to come over. As if he was telling his daughter: I am waiting for you on the other side, don't worry.
Lara has told me the story many times.
When her father, Howard, was dying, his wife, Connie, tried to get the children out of the house and create some quiet space for their father and stepfather to pass away peacefully at home. Connie stayed behind and so did Jeffrey, Lara's younger brother. The rest of the kids, some more reluctantly than others, went for a ride along the coast in the area. They made it to the San Francisco Zoo.
At a certain moment, on the way back, they saw a beautiful double rainbow and stopped to admire it. Exceptionally it sat over the ocean. Lara knew right then - and perhaps the others as well - that Howard had died. He had indeed, as they found out once back at the house. Later it turned out that their sister Christine, vacationing in Hawaii, had seen a rainbow at exactly the same time. Ever since, each time we saw a rainbow, Lara would exclaim: "Hi, Howard!", with true affection in her voice.
Twice over the past several days, looking out of her hospital window, against the afternoon sky, we saw a magnificent rainbow. Significantly, they were double ones! So, again, immediately our thoughts went to Lara's father (I never knew him myself, one of Lara's regrets in life). It is odd to say, but I had the distinct feeling that her dad was beckoning her to come over. As if he was telling his daughter: I am waiting for you on the other side, don't worry.
woensdag 18 april 2012
The Next Day
Apologies to all those who had to learn the difficult news through the present blog. Last night, after recovering from the shock ourselves, Lara and I called a number of relatives and friends by phone to inform them about the status. We couldn't muster the courage to deal with the emotional burden of telling and retelling essentially the same story and accommodate grief on a one-to-one basis. I wrote the Doomsday post last night, but upon the advice of friends I held back and didn't post it until late this morning. But it had to get out at some point lest people would start to call around among themselves and not hear it from us directly.
Wednesday April 18 late afternoon
The response today was overwhelming. I was there with Lara for six hours today. Dozens of phone calls, mails and messages coming in. Taxing as well, for they amounted to farewells. I have so much admiration for Lara's stamina and wisdom. She has a kind word for every caller, biting back her tears at times, but gratified that at least there was contact.
Lara is serene and calm. 'With it' enough to discuss about this and the other thing. Including solving the Jumbles in the IHT. Then, around four, she slipped away as usual into sleep and fever, shivering slightly. Many phone calls and messages coming in during the course of the afternoon and travel plans solidifying. We are awaiting contact with the social team of the hospital to set up home care for Lara, hopefully before the weekend. As I write, around 6:00PM, she is waiting for the intravenous Dafalgan to kick in and take her temp down from 38.9C to about 37C.
Around 7:00PM I schnuggled up against her on the hospital bed, allowing her head to fall against my shoulder and we just talked, softly, about where she was going and where that would leave me.
I had to tear myself away around 8:30PM. Emotionally, by that time, I was slightly out of whack. As I was paying my parking ticket I was also talking to my sister over the phone; she is vacationing in Egypt. In the process, I lost my exit ticket, as I found out standing in front of the boom with two cars behind me. Never done that before. Then I had to negotiate a 25 euro fine for losing my ticket on the thin claim that I had been a steady customer for over a year. They reneged.
Then on the way back, I heard an unfamiliar beep in my car, one I couldn't find the source of. So I see this light blinking on the fuel gauge indicator. No gas left. Fortunately, about one kilometer up the street there is a gas station where I end up running on my fumes. Had I passed the station first, I wouldn't have made it home.
I have got to focus more.
Wednesday April 18 late afternoon
The response today was overwhelming. I was there with Lara for six hours today. Dozens of phone calls, mails and messages coming in. Taxing as well, for they amounted to farewells. I have so much admiration for Lara's stamina and wisdom. She has a kind word for every caller, biting back her tears at times, but gratified that at least there was contact.
Lara is serene and calm. 'With it' enough to discuss about this and the other thing. Including solving the Jumbles in the IHT. Then, around four, she slipped away as usual into sleep and fever, shivering slightly. Many phone calls and messages coming in during the course of the afternoon and travel plans solidifying. We are awaiting contact with the social team of the hospital to set up home care for Lara, hopefully before the weekend. As I write, around 6:00PM, she is waiting for the intravenous Dafalgan to kick in and take her temp down from 38.9C to about 37C.
Around 7:00PM I schnuggled up against her on the hospital bed, allowing her head to fall against my shoulder and we just talked, softly, about where she was going and where that would leave me.
I had to tear myself away around 8:30PM. Emotionally, by that time, I was slightly out of whack. As I was paying my parking ticket I was also talking to my sister over the phone; she is vacationing in Egypt. In the process, I lost my exit ticket, as I found out standing in front of the boom with two cars behind me. Never done that before. Then I had to negotiate a 25 euro fine for losing my ticket on the thin claim that I had been a steady customer for over a year. They reneged.
Then on the way back, I heard an unfamiliar beep in my car, one I couldn't find the source of. So I see this light blinking on the fuel gauge indicator. No gas left. Fortunately, about one kilometer up the street there is a gas station where I end up running on my fumes. Had I passed the station first, I wouldn't have made it home.
I have got to focus more.
dinsdag 17 april 2012
Doomsday
Tuesday 17 April late evening
I ran into Lara's physician in the corridor around 5:00PM and she announced she was about to "entrer en chambre", meaning please, keep yourself available. As usual she kept a straight face. It was the way she said it that gave me the shivers, especially when she added they had the results of the bone marrow puncture. A chill ran down my spine. Something was telling me that her news was not going to be good news. If the results were good, she could have spared a smile. There was none.
I didn't share this with Lara when I went back into her room. At the time she was running a temp of 39.3C and reclining with her eyes closed. She had taken off her turban to keep her head cooler; comfort over appearance. Lara had been dreading the moment that was upon her and had been saying for several days now that the results of the puncture better be good. I can deal with the rest, she said, meaning the infections. Best not to spoil her peace in these last minutes. My heart was racing. There was a feeling of doom in the air. A tenseness.
The longer it took for the doctor to make her entry, the more worried I became. Again, if the news were good, she wouldn't procrastinate. When finally, at around 6:00PM, she came in, assistant in tow, the first thing she did was ask Lara's roommate and her daughter to please wait outside. Then I was sure and I had this sinking feeling. Lara was bracing herself. Clad in my favorite cross-striped nighty, no turban, the sheets flipped back, tubing streaming from her face and neck, she looked totally vulnerable.
The doctor came right to the point. I don't have good news, she said. The bone marrow shows over seventy percent bad cells, to the point where healthy white cells are no longer detectable. So you have no tools to fight the current infections with. The antibiotics need the WBC to deal with the infections effectively. As long as you have infections, you are not ready to undergo another chemotherapy. Without a chemotherapy the bad cells will stay and multiply preventing the bone marrow from producing healthy cells, of all types.
"So that's the end then?", said Lara in a resolute tone. She got it rightaway. The doctor took a breath and admitted it would be "tres, tres difficile". Very difficult. Lara turned to me and said: "You are going to lose me; that's it!" Tu vas me perdre!
The conversation went back and forth over the sequel to this, in terms of logistics, palliative care, and of course time frame. "How long have I got? Give it to me straight!", Lara wanted to know. The doctor prevaricated and said it would be difficult to say. The new antobiotics would have to be given a chance. Lara waved it away, realizing full well these were rearguard skirmishes at best. So how long, she insisted? The doctor answered that if any arrangements had to be put in place, or next-of-kin summoned to her bedside, it had to happen now!
"But I don't want to die here. I want to go home." Lara was quite decided on that, too. That will be possible, was the answer, but arrangements need to be made. After all, providing care to a terminal patient is a disicipline all its own. You need qualified staff.
After the doctors left, we looked at each other incredulously. The enormity of what had just happened was just too much to absorb in one fell swoop. We talked, and made several phone calls, to Lara's brothers, friend of hers, their children even. "Yasmin and Madelief will never know me as their grandmother", she said with regret. It was a searing comment. Not having been a mam herself, being a grandma is her pride and joy.
maandag 16 april 2012
Infection
Monday 16 April evening
The foyer d'infection that scans had shown in her right lung since Wednesday last week, has actually grown despite the antibiotics. Lara's treating physician rushes in and breaks the news to us. She is one of those doctors with a poker face; impossible to tell whether she is pessimistic, hopeful or convinced of either. They cannot tell, she says, if it is viral, bacterial or fungal.The only way to find out what they are looking at would be to extract fluid from the lung, but they hesitate to perform an invasive procedure at this point. She is too weak.
After consulting an infectiologist (if that is the term), they have decided to change the antibiotic regime. The want to switch to Biclar (clarithromycin), member of the true stalwarts among antibiotics. I don't know if the Ceftazidime and Targocid will discontinued as a consequence, either both or one of them. Forgot to ask. In addition they will administer AmBisole, a very strong antifungal, also around since many years. In order to better tolerate it, she receives first preparatory medication (anti-allogen).
As I write this, bedside, at around 7:00PM, the Dafalgan has lowered her temp to a decent 37.3C, but she is still limp and listless at first glance. Nonetheless, her mind is all over the place and she engages me in conversation. Even participates in solving the Jumbles in the newspaper. (And getting it bang on.) Wants to know what I had for dinner Friday night and what I talked about with my companion at the Opera. And why don't I find out if there is a good action movie playing; that would take my mind of things, she says.
"The most important thing is that the bone marrow comes out OK. The rest we can fight. I will pull through this!" Let us root for that, folks. Tomorrow afternoon, we should know more.
The foyer d'infection that scans had shown in her right lung since Wednesday last week, has actually grown despite the antibiotics. Lara's treating physician rushes in and breaks the news to us. She is one of those doctors with a poker face; impossible to tell whether she is pessimistic, hopeful or convinced of either. They cannot tell, she says, if it is viral, bacterial or fungal.The only way to find out what they are looking at would be to extract fluid from the lung, but they hesitate to perform an invasive procedure at this point. She is too weak.
After consulting an infectiologist (if that is the term), they have decided to change the antibiotic regime. The want to switch to Biclar (clarithromycin), member of the true stalwarts among antibiotics. I don't know if the Ceftazidime and Targocid will discontinued as a consequence, either both or one of them. Forgot to ask. In addition they will administer AmBisole, a very strong antifungal, also around since many years. In order to better tolerate it, she receives first preparatory medication (anti-allogen).
As I write this, bedside, at around 7:00PM, the Dafalgan has lowered her temp to a decent 37.3C, but she is still limp and listless at first glance. Nonetheless, her mind is all over the place and she engages me in conversation. Even participates in solving the Jumbles in the newspaper. (And getting it bang on.) Wants to know what I had for dinner Friday night and what I talked about with my companion at the Opera. And why don't I find out if there is a good action movie playing; that would take my mind of things, she says.
"The most important thing is that the bone marrow comes out OK. The rest we can fight. I will pull through this!" Let us root for that, folks. Tomorrow afternoon, we should know more.
Puncture
Monday 16 April
This morning's blood sample did not reveal elevated levels of WBC, depite early microscopic sightings late last week. We are one Day 20 today, and the statistical average is 21 for the beginnng of the surge.
Writing this I am remineded of what we were looking at when Lara was in intensive care, last year. We were strung along by successive projections offred by different doctors that went wfrom 21 to 28 days and beyond. The waiting game. This time it doesn't seem any different. The bone marrow will just have to follow its course.
Speaking of which: they are doing a puncture this afternoon. The key question doctors are now seeking to answer is not where the WBC are, but if they spot any bad cells! They want the marrow to be crisp and clean, like last year's. If, in addition, they see any signs of resurging leukocytes, that will count as a bonus of the puncture, not as the main purview. Do the mantra, folks: healthy, healthy, healthy! (With the emphasis on the second syllable.)
Lara didn't feel too well receiving insulin to counteract the glucose in her nutrition package and told the doctors she doesn't want any part of either. So now they are stopping both. Which means she will have to make credible dents in her three meals of the day, thus convincing the doctors she imbibes and ingests sufficient nutrients.
Other than that, she sounded more with it than the days before.
Stay tuned.
This morning's blood sample did not reveal elevated levels of WBC, depite early microscopic sightings late last week. We are one Day 20 today, and the statistical average is 21 for the beginnng of the surge.
Writing this I am remineded of what we were looking at when Lara was in intensive care, last year. We were strung along by successive projections offred by different doctors that went wfrom 21 to 28 days and beyond. The waiting game. This time it doesn't seem any different. The bone marrow will just have to follow its course.
Speaking of which: they are doing a puncture this afternoon. The key question doctors are now seeking to answer is not where the WBC are, but if they spot any bad cells! They want the marrow to be crisp and clean, like last year's. If, in addition, they see any signs of resurging leukocytes, that will count as a bonus of the puncture, not as the main purview. Do the mantra, folks: healthy, healthy, healthy! (With the emphasis on the second syllable.)
Lara didn't feel too well receiving insulin to counteract the glucose in her nutrition package and told the doctors she doesn't want any part of either. So now they are stopping both. Which means she will have to make credible dents in her three meals of the day, thus convincing the doctors she imbibes and ingests sufficient nutrients.
Other than that, she sounded more with it than the days before.
Stay tuned.
zondag 15 april 2012
Russia
I deduct from reading the stats on the readership of this blog that we have Lara affecionados all over the world and, surprisingly, in Russia. Just out of curiiosity: could the reader or readers from Russia please identify themselves? Thanks.
Fever
Sunday 15 April evening
We realize that fever is essentially a good response by the body against infections. (I seem to remember the five basic traits of an infection: tumor, rubor, dolor, calor and functi laesis. Correct me if I am wrong.)
So we are for fever! It's just that it can be so damned uncomfortable. Especially if it comes spiraling up - going from 37C to over 39C in under half an hour - only to be forced down again by paracetamol. But Lara is willing to bite the bullet and forego Dafalgan. Usually early in the night, around 1:30AM, the medication she received around 6:00PM the previous day will have worn off. She waited to take more and 'loose' it's benign effects while being asleep the rest of the night. She dealt with the fever the rest of the way, sleeping intermittently, until about 8:00 AM before taking more. That lasted her well into the afternoon, until around 4:00PM, which is when I arrived. Her temperature had just started to go up again and she was flushed and shivering, her eyes droopy. A sick fly, with a pink turban.
She is still hyperglycemic (219) and just received another insulin shot. As I sit here and write by the foot end of her bed, I see her head has fallen to her right and she is soundly asleep. So I will wake her up in a few minutes to let her enjoy the time she is without fever.
Her saturation (remember, oxygen uptake in the blood) was on the low side today (94) as opposed to yesterday, and so they continue the oxygen supply up her nostrils. It dries out her mucus membranes, so I arranged for a small humidifier.The oxygen and the fever make her go through bottles and bottles of water each day. Sometimes she mixes in some red berry juice (rich in anti-oxidants) as a bonus. Here appetite is at a low point. She wanted to have no part of her supper (pizza, mozzarella, broccoli plus a cauliflower-egg salad), so I tried it myself but likewise desisted. I will have to leave no later than right now, for otherwise I won't make it to the corner supermarket before closing time.
Will revert.
We realize that fever is essentially a good response by the body against infections. (I seem to remember the five basic traits of an infection: tumor, rubor, dolor, calor and functi laesis. Correct me if I am wrong.)
So we are for fever! It's just that it can be so damned uncomfortable. Especially if it comes spiraling up - going from 37C to over 39C in under half an hour - only to be forced down again by paracetamol. But Lara is willing to bite the bullet and forego Dafalgan. Usually early in the night, around 1:30AM, the medication she received around 6:00PM the previous day will have worn off. She waited to take more and 'loose' it's benign effects while being asleep the rest of the night. She dealt with the fever the rest of the way, sleeping intermittently, until about 8:00 AM before taking more. That lasted her well into the afternoon, until around 4:00PM, which is when I arrived. Her temperature had just started to go up again and she was flushed and shivering, her eyes droopy. A sick fly, with a pink turban.
She is still hyperglycemic (219) and just received another insulin shot. As I sit here and write by the foot end of her bed, I see her head has fallen to her right and she is soundly asleep. So I will wake her up in a few minutes to let her enjoy the time she is without fever.
Her saturation (remember, oxygen uptake in the blood) was on the low side today (94) as opposed to yesterday, and so they continue the oxygen supply up her nostrils. It dries out her mucus membranes, so I arranged for a small humidifier.The oxygen and the fever make her go through bottles and bottles of water each day. Sometimes she mixes in some red berry juice (rich in anti-oxidants) as a bonus. Here appetite is at a low point. She wanted to have no part of her supper (pizza, mozzarella, broccoli plus a cauliflower-egg salad), so I tried it myself but likewise desisted. I will have to leave no later than right now, for otherwise I won't make it to the corner supermarket before closing time.
Will revert.
zaterdag 14 april 2012
Iceberg
Saturday 14 April evening
Today one hundred years ago the Titanic hit the famous iceberg. Lara wouldn't have minded hewing a chip off the cool colossus and putting it on her forehead, sizzling. She was burning up with fever - this morning and again late afternoon. For the sixth day in succession, her temperature spiralled twice in one day, to over 39C, and it wipes her out. Cold packs bring short relief and paracetamol more long lasting but intermittent. She slept for an hour and a half, not noticing that a nurse changed her drip bags, and while I read the news paper and ate a salad. Out cold.
Bouke and Merel were supposed to come and visit her, but after speaking to Lara this morning, she and I agreed that would not be a great idea. So Bouke spoke to Lara about 8:00PM, after she had perked up a bit.
Turns out she is a little hyperglycemic. Yesterday she clocked at 145 mg/dl, and this afternoon at no less than 224 - the standard is 126. The reason is she is being fed a pack of nutrients intravenously and the body doesn't know anymore how to deal with the sugar and spills it over. A shot of insulin balances out the equation. No problem. This may last for a couple of days.
This morning I went on my hosiery mission and came back with a charming front button night shirt,black with small while dots, which I washed and ironed before taking it in. Felt quite proud of myself.
Today one hundred years ago the Titanic hit the famous iceberg. Lara wouldn't have minded hewing a chip off the cool colossus and putting it on her forehead, sizzling. She was burning up with fever - this morning and again late afternoon. For the sixth day in succession, her temperature spiralled twice in one day, to over 39C, and it wipes her out. Cold packs bring short relief and paracetamol more long lasting but intermittent. She slept for an hour and a half, not noticing that a nurse changed her drip bags, and while I read the news paper and ate a salad. Out cold.
Bouke and Merel were supposed to come and visit her, but after speaking to Lara this morning, she and I agreed that would not be a great idea. So Bouke spoke to Lara about 8:00PM, after she had perked up a bit.
Turns out she is a little hyperglycemic. Yesterday she clocked at 145 mg/dl, and this afternoon at no less than 224 - the standard is 126. The reason is she is being fed a pack of nutrients intravenously and the body doesn't know anymore how to deal with the sugar and spills it over. A shot of insulin balances out the equation. No problem. This may last for a couple of days.
This morning I went on my hosiery mission and came back with a charming front button night shirt,black with small while dots, which I washed and ironed before taking it in. Felt quite proud of myself.
vrijdag 13 april 2012
Hosiery
Friday 13 April evening
Friday the thirteenth, a bad omen ever sincea French King named Philip opened the hunt for the Knights Templar in the year 1307 - Friday, October 13th.
For Lara it wasn't one of Lara's better days for sure. She had a rough night with fever shooting up well over 39C. The night nurses forced it down with Dafalgan and cold packs. Towards midday it came back up again, and when I arrived at 2:45PM her temp stood at 39.4C. That, my friends, is a hefty temperature for an adult. Lara lay shivering under the sheets, an unusal blush on her cheeks. She was just burning up, despite drinking lots of water. The will give her no more than 3 grams of Dafalgan per day so they will have to make it last.
Lot, my daughter, surprised her with a visit. Lot had come several times to support her dad, last year, but had trouble relocating Yasmin, our granddaughter, who is not,allowed anywhere near susceptible adults.This time she had come over specially, by herself. Lara did her utmost over three hours to be her usual self, engaging her in conversation, wise-cracking, but you could see that it took a lot out of her.
The day ended (it is now 6:30PM) with two pieces of good news. One, there was talk of exchanging her central line (voie central) to avoid bacterial risks, but after re-checking their data as between the hematologist and the bacteriologist, they decided against it. Not worth the hassle. Two, they did a microscopic scan of this morning's blood sample and the first signs of a return of the leukocytes were duly observed, although it is too early to tell. Monday we will know more.
Gert-Jan, my friend the doctor, agreed with the choice of antibiotics and antifungals, even though it didn't correspond 100% with his own preferences. He wasn't particularly worried about a CPR of 19.1, which he would have been at a level of 40. An important and anodyne piece of news.
Tomorrow I will get myself over to Honkemoller on the rue Neuve, a specialty store for hosiery and seek out some night gowns and shirts for Lara. Who would have thought I would ever venture into a shop like that - by myself? I bet the vendeuses will nudge eachother pointing at me saying: there goes another one!
Off to a brasserie for dinner.
Friday the thirteenth, a bad omen ever sincea French King named Philip opened the hunt for the Knights Templar in the year 1307 - Friday, October 13th.
For Lara it wasn't one of Lara's better days for sure. She had a rough night with fever shooting up well over 39C. The night nurses forced it down with Dafalgan and cold packs. Towards midday it came back up again, and when I arrived at 2:45PM her temp stood at 39.4C. That, my friends, is a hefty temperature for an adult. Lara lay shivering under the sheets, an unusal blush on her cheeks. She was just burning up, despite drinking lots of water. The will give her no more than 3 grams of Dafalgan per day so they will have to make it last.
Lot, my daughter, surprised her with a visit. Lot had come several times to support her dad, last year, but had trouble relocating Yasmin, our granddaughter, who is not,allowed anywhere near susceptible adults.This time she had come over specially, by herself. Lara did her utmost over three hours to be her usual self, engaging her in conversation, wise-cracking, but you could see that it took a lot out of her.
The day ended (it is now 6:30PM) with two pieces of good news. One, there was talk of exchanging her central line (voie central) to avoid bacterial risks, but after re-checking their data as between the hematologist and the bacteriologist, they decided against it. Not worth the hassle. Two, they did a microscopic scan of this morning's blood sample and the first signs of a return of the leukocytes were duly observed, although it is too early to tell. Monday we will know more.
Gert-Jan, my friend the doctor, agreed with the choice of antibiotics and antifungals, even though it didn't correspond 100% with his own preferences. He wasn't particularly worried about a CPR of 19.1, which he would have been at a level of 40. An important and anodyne piece of news.
Tomorrow I will get myself over to Honkemoller on the rue Neuve, a specialty store for hosiery and seek out some night gowns and shirts for Lara. Who would have thought I would ever venture into a shop like that - by myself? I bet the vendeuses will nudge eachother pointing at me saying: there goes another one!
Off to a brasserie for dinner.
donderdag 12 april 2012
Cocci
Thursday 12 April evening
The opera was great and I had a nice time with Nicola Filippi. Great music; solid and splendiferous performance.
In the afternoon I had spent about two hours and a half with Lara, taking her for a brief walk in the corridor. She is doing OK. Pink turband in place.
I talked to the senior hematologist and she told me more specifically what they had found inside Lara. Last week the lab had found an Enterobacter, the same pathogen that had given her troubles in May of last year, as I reported a few days ago. More disturbing is that on 10 April, the lab also found a staphylococcus (but not the same as last year, or so I understood her to say), and today they had also seen a streptococcus. However, she was confident that with Ceftazidim and Targocid as antibiotics plus Cancidas as an anti-fungal, they had covered all the flanks.
I am not going to talk to Lara about the cocci, for she will freak when hearing about the staphs which almost killed her last year and maimed her lungs permanently.
We are now on Day 16 and waiting for the WBC to return. The doctor reminded me that last year, after the second chemo cure, they came back up on Day 18 and after the third on Day 15 with the same chemical compound (Cytosar). She said that it was reasonable to expect some action over the next few days. Inflammation may go up as a result. She also pointed out that Lara was still breathing on her own, while she had spotted her taking a walk in the corridor that afternoon. So we have a little margin, she said.
I briefly spoke to Lara after the opera. She was trying to sleep. The Dafalgan had brought her fever down and she hoped it would last her a good portion of the night.
I truly admire the woman.
The opera was great and I had a nice time with Nicola Filippi. Great music; solid and splendiferous performance.
In the afternoon I had spent about two hours and a half with Lara, taking her for a brief walk in the corridor. She is doing OK. Pink turband in place.
I talked to the senior hematologist and she told me more specifically what they had found inside Lara. Last week the lab had found an Enterobacter, the same pathogen that had given her troubles in May of last year, as I reported a few days ago. More disturbing is that on 10 April, the lab also found a staphylococcus (but not the same as last year, or so I understood her to say), and today they had also seen a streptococcus. However, she was confident that with Ceftazidim and Targocid as antibiotics plus Cancidas as an anti-fungal, they had covered all the flanks.
I am not going to talk to Lara about the cocci, for she will freak when hearing about the staphs which almost killed her last year and maimed her lungs permanently.
We are now on Day 16 and waiting for the WBC to return. The doctor reminded me that last year, after the second chemo cure, they came back up on Day 18 and after the third on Day 15 with the same chemical compound (Cytosar). She said that it was reasonable to expect some action over the next few days. Inflammation may go up as a result. She also pointed out that Lara was still breathing on her own, while she had spotted her taking a walk in the corridor that afternoon. So we have a little margin, she said.
I briefly spoke to Lara after the opera. She was trying to sleep. The Dafalgan had brought her fever down and she hoped it would last her a good portion of the night.
I truly admire the woman.
Turandot
Thursday 12 April morning
Her inflammation marker (CRP) remains high (20.9, even higher than yesterday), which means her body is using inflammation and fever to fight intruders, helped by two antibiotics and Cancidas (against fungal infections). Doctors still have no idea what they saw on the scan of her lungs but they are reticent using invasive procedures at this point. The medication should cover whatever it is she has.
The bone marrow puncture (to see if there are any remnants of the disease present, i.e. bad cells) will be done on Monday. Meanwhile we are hopeful for the return of the WBC (remember, white blood cells, or leukocytes?). We should see upward movement in the WBC count over the next several days, normally. Their return will probably lead to elevated inflammation which calls for collateral medication, but we will cross that bridge when we come to it.
This morning nurses shaved off all Lara's hair, so I will have to bring in the cache-misere this afternoon.
We were supposed to go see an opera tonight (Turandot), and we regret not being able to go together. I invited the Ambassador of San Marino to accompany me, and that is what is going to happen.
Her inflammation marker (CRP) remains high (20.9, even higher than yesterday), which means her body is using inflammation and fever to fight intruders, helped by two antibiotics and Cancidas (against fungal infections). Doctors still have no idea what they saw on the scan of her lungs but they are reticent using invasive procedures at this point. The medication should cover whatever it is she has.
The bone marrow puncture (to see if there are any remnants of the disease present, i.e. bad cells) will be done on Monday. Meanwhile we are hopeful for the return of the WBC (remember, white blood cells, or leukocytes?). We should see upward movement in the WBC count over the next several days, normally. Their return will probably lead to elevated inflammation which calls for collateral medication, but we will cross that bridge when we come to it.
This morning nurses shaved off all Lara's hair, so I will have to bring in the cache-misere this afternoon.
We were supposed to go see an opera tonight (Turandot), and we regret not being able to go together. I invited the Ambassador of San Marino to accompany me, and that is what is going to happen.
woensdag 11 april 2012
Jumbles
Wednesday 11 April evening
Weird patterns of temperature. It rises, then goes down again, making her shiver at one time, then reaching for icepacks another.
She is not the looker anymore we like to remember her as. Her skin is gaunt, wrinkled, her eyes droopy, her hair is starting to come out in clumps now every time she runs her fingers through it. Poor kid. Appearance isn't everything perhaps, but we know it is related to self-esteem and morale. And morale is related to stamina and perseverance. And perseverance is half the mileage that comes with recovery.
Lara, almost subliminally but repeatedly, asked for my kids to come and see her. I hesitate to try and fathom why she asked for them at this precise moment. Some questions are best not pushed to the brink. Anyway, I made some quiet phone calls. Lot is coming Friday; Bouke and Merel Saturday. That will perk her up.
Leslie, her sister, is scheduled to come in from California by the end of the month; John and Marie Zderic, good frineds of the family, around that time also (she doesn't know about it), from San Francisco. Lara will be delighted to see them.
Two days ago I was still taking walks of half an hour; now I can barely make it to the bathroom. She says it with an air of cold analysis and doesn't make it sound as a complaint. But the downward trend is visible to all. She is weaker than she was. Small wonder with the kind of blood stats she has. Lara realizes she has to move, or she will start loosing muscle mass and control sooner than she can win them back. So she really tries to walk, exercise in bed with her elastic bands.
I don't like it that doctors again have to focus on her lungs, now the weakest part of her body. The thought that an infection would be brewing there, or a fungus of some sort, is positively frightening. Her saturation (still around 100 a few days ago) is now down to 95, slowly coming up from as low as 85. Her blood pressure was 100 over 40 this afternoon. She has no appetite, she coughs and vomits. Not an uplifting experience, but that is what it is.
Her mind is fine. She roundly beat me at the Jumbles in the International Herald Tribune, and we went on to discuss the intentions of North Korea.
Since this afternoon Lara has a new room mate, just when she was beginning to relish the quiet atmosphere of a place to herself.
Weird patterns of temperature. It rises, then goes down again, making her shiver at one time, then reaching for icepacks another.
She is not the looker anymore we like to remember her as. Her skin is gaunt, wrinkled, her eyes droopy, her hair is starting to come out in clumps now every time she runs her fingers through it. Poor kid. Appearance isn't everything perhaps, but we know it is related to self-esteem and morale. And morale is related to stamina and perseverance. And perseverance is half the mileage that comes with recovery.
Lara, almost subliminally but repeatedly, asked for my kids to come and see her. I hesitate to try and fathom why she asked for them at this precise moment. Some questions are best not pushed to the brink. Anyway, I made some quiet phone calls. Lot is coming Friday; Bouke and Merel Saturday. That will perk her up.
Leslie, her sister, is scheduled to come in from California by the end of the month; John and Marie Zderic, good frineds of the family, around that time also (she doesn't know about it), from San Francisco. Lara will be delighted to see them.
Two days ago I was still taking walks of half an hour; now I can barely make it to the bathroom. She says it with an air of cold analysis and doesn't make it sound as a complaint. But the downward trend is visible to all. She is weaker than she was. Small wonder with the kind of blood stats she has. Lara realizes she has to move, or she will start loosing muscle mass and control sooner than she can win them back. So she really tries to walk, exercise in bed with her elastic bands.
I don't like it that doctors again have to focus on her lungs, now the weakest part of her body. The thought that an infection would be brewing there, or a fungus of some sort, is positively frightening. Her saturation (still around 100 a few days ago) is now down to 95, slowly coming up from as low as 85. Her blood pressure was 100 over 40 this afternoon. She has no appetite, she coughs and vomits. Not an uplifting experience, but that is what it is.
Her mind is fine. She roundly beat me at the Jumbles in the International Herald Tribune, and we went on to discuss the intentions of North Korea.
Since this afternoon Lara has a new room mate, just when she was beginning to relish the quiet atmosphere of a place to herself.
Lungs
Wednesday 11 April afternoon
The results of the scan are inconclusive for the time being. Doctors see something in her lungs but cannot decide if they are looking at the source of a bacterial infection or at mushrooms. They are contemplating giving her an antifungal as a precaution. She stays of Ceftazidim and Targocid. Her CRP (inflammation marker) was up to 18.
Lara is on Day 15 of her chemotherapy (J15 in French). How time flies, no? Tomorrow they will do a bone marrow puncture to judge how things are coming along down there.
She felt sorry I had to opt out of the Chapitre des Tulipes, but I told her to pay it no mind. We will go together next year, I said. If I have a next year, she sobbed. Stop it, was my answer, of course we will have one.
The results of the scan are inconclusive for the time being. Doctors see something in her lungs but cannot decide if they are looking at the source of a bacterial infection or at mushrooms. They are contemplating giving her an antifungal as a precaution. She stays of Ceftazidim and Targocid. Her CRP (inflammation marker) was up to 18.
Lara is on Day 15 of her chemotherapy (J15 in French). How time flies, no? Tomorrow they will do a bone marrow puncture to judge how things are coming along down there.
She felt sorry I had to opt out of the Chapitre des Tulipes, but I told her to pay it no mind. We will go together next year, I said. If I have a next year, she sobbed. Stop it, was my answer, of course we will have one.
Chivalrous
Wednesday 11 April morning
Again Lara had a rough night. Her fever went up to no less than 40.5C, very high indeed. They gave her Dafalgan through the central line and later more, orally. She was perspiring heavily, soaking her sheets, and went through one bottle of water after another. In the course of the morning, her temp was donw at just over 37C, which felt like quite a relief to her.
Around eleven she was taken downstairs to have a scan made of her lungs, to check if anything untowards is growing there.
In light of her condition, I have cancelled my trip to Burgundy to assist at the festivities in Clos de Vougeot of the Chevaliers du tastevin. Lara needs me.
Again Lara had a rough night. Her fever went up to no less than 40.5C, very high indeed. They gave her Dafalgan through the central line and later more, orally. She was perspiring heavily, soaking her sheets, and went through one bottle of water after another. In the course of the morning, her temp was donw at just over 37C, which felt like quite a relief to her.
Around eleven she was taken downstairs to have a scan made of her lungs, to check if anything untowards is growing there.
In light of her condition, I have cancelled my trip to Burgundy to assist at the festivities in Clos de Vougeot of the Chevaliers du tastevin. Lara needs me.
dinsdag 10 april 2012
Chicken Curry
Tuesday 10 April
Lara had a rough night, with fever peaking at 39C around five in the morning. She called me, slightly panicky. At around seven o'clock, when she called me again, the fever was down to just over 37C (which is still elevated by Lara's personal standard). Her CRP was down to around 12 (should be < 1)
She feels weak being both aplastic and anemic (low on red and no white blood cells). The nurse had to help her wash; couldn't hack it herself. Her eyes are droopy like those of a little kid with a big flu and she covered herself with a double blanket. When I left around 7:30PM, her fever was up again to 38C and she was shivering.
One of her antibiotics (Glindamycin) has been withdrawn and substituted by Targocid (you can Google it if you want). She keeps the Ceftazidim. If she keeps her fever tomorrow, they will do a lung scan to check if there are any mushrooms growing in her lungs. No movement in the leukocyte department.
Her appetite being non existent, I helped myself to chicken curry and rice. Quite tasty actually. In between we solved the Jumble in the Herald Tribune. She won.
Her treating physician is back from vacation and Lara discussed with her this afternoon the prospects of her treatment (Cytosar plus or minus Vosaroxin). We are discussing with a leukemia specialist in Seattle what the pros and cons of the present protocol is and what and where we might find as alternatives. The doctor will contact Alan Burnett in Oxford (whom we had asked for advice several times last year, too) and solicit his views. Prospects are rather tight in Lara's case. Her morale is being tested.
Lara had a rough night, with fever peaking at 39C around five in the morning. She called me, slightly panicky. At around seven o'clock, when she called me again, the fever was down to just over 37C (which is still elevated by Lara's personal standard). Her CRP was down to around 12 (should be < 1)
She feels weak being both aplastic and anemic (low on red and no white blood cells). The nurse had to help her wash; couldn't hack it herself. Her eyes are droopy like those of a little kid with a big flu and she covered herself with a double blanket. When I left around 7:30PM, her fever was up again to 38C and she was shivering.
One of her antibiotics (Glindamycin) has been withdrawn and substituted by Targocid (you can Google it if you want). She keeps the Ceftazidim. If she keeps her fever tomorrow, they will do a lung scan to check if there are any mushrooms growing in her lungs. No movement in the leukocyte department.
Her appetite being non existent, I helped myself to chicken curry and rice. Quite tasty actually. In between we solved the Jumble in the Herald Tribune. She won.
Her treating physician is back from vacation and Lara discussed with her this afternoon the prospects of her treatment (Cytosar plus or minus Vosaroxin). We are discussing with a leukemia specialist in Seattle what the pros and cons of the present protocol is and what and where we might find as alternatives. The doctor will contact Alan Burnett in Oxford (whom we had asked for advice several times last year, too) and solicit his views. Prospects are rather tight in Lara's case. Her morale is being tested.
Big Chicken
Easter Monday 9 April
I forgot to write a post yesterday, probably because I was having such a good time. Fact is that my daughter, Lot, had correctly judged that I badly needed some distraction. So she invited me to join her family (her husband Kai and our granddaughter Yasmin) for a visit to a safaripark. Gladly accepted.
The park is near the city of Tilburg, east of Breda, the family's hometown in the South of Holland. For me it was a stiff ride of an hour and a half, but I met them on the parking lot at noon sharp, as agreed. The weather didn't exactly favor our visit, and when a steady drizzle had set in we hurried it up a bit. Animals don't show themselves much in such conditions. Still, we saw four out of the big five: lions, rhinos, elephants and buffalo. And plenty of apes and monkeys. Plus an ostrich, dubbed a "Big Chicken" by Yasmin.
It was fun.
A little after five I was back visiting Lara at the hospital, where I ran into Andreina Steeghs. Lara was doing OK, but barely so. Her CRP (infammation marker) had come down from around 24 on Easter Sunday, to 16, so in the good direction. Her appetite was not great.
I forgot to write a post yesterday, probably because I was having such a good time. Fact is that my daughter, Lot, had correctly judged that I badly needed some distraction. So she invited me to join her family (her husband Kai and our granddaughter Yasmin) for a visit to a safaripark. Gladly accepted.
The park is near the city of Tilburg, east of Breda, the family's hometown in the South of Holland. For me it was a stiff ride of an hour and a half, but I met them on the parking lot at noon sharp, as agreed. The weather didn't exactly favor our visit, and when a steady drizzle had set in we hurried it up a bit. Animals don't show themselves much in such conditions. Still, we saw four out of the big five: lions, rhinos, elephants and buffalo. And plenty of apes and monkeys. Plus an ostrich, dubbed a "Big Chicken" by Yasmin.
It was fun.
A little after five I was back visiting Lara at the hospital, where I ran into Andreina Steeghs. Lara was doing OK, but barely so. Her CRP (infammation marker) had come down from around 24 on Easter Sunday, to 16, so in the good direction. Her appetite was not great.
zondag 8 april 2012
Up and Down
Easter Sunday 8 April
A bit of an up and down day, with mild fever and shivering being suppressed by paracetamol (Dafalgan). During the second of my two visits today I crumbled an effervescent tablet in a glass of warm water and she drank it with relish. Is it that good, I wanted to know? It tastes fine, she said, particularly the lemon flavor, but you realize that when you start to enjoy Dafalgan, you are really scraping the bottom of the barrel. True enough.
News from the lab is that the bacteria giving her trouble is an indigenous one and the very same that caused her a urinary tract infection last year May. Nothing that cannot be dealt with by antibiotics. They changed medication accordingly, but I have no specifics just yet.
Lara also receives medication to suppress nausea. She is also showing reddishness in her skin (particularly on her back) due to the chemo but the concomitant itch is mild and easily alleviated by Calendula emulsion. Her appetite has suffered. Having enjoyed a copious Easter meal at the house of friends of ours, I couldn't really help her make a dent in her supper pasta. (Later, when watching Dr House on TV, she managed to eat a fair bit of it anyway.)
We are now on Day 12 of the chemotherapy. Major blood stats cannot be expected to be back up before another 12 days have gone by. If by then she is strong enough and free of nasty complications, she will be granted homeleave before the second chemotherapy begins.
A bit of an up and down day, with mild fever and shivering being suppressed by paracetamol (Dafalgan). During the second of my two visits today I crumbled an effervescent tablet in a glass of warm water and she drank it with relish. Is it that good, I wanted to know? It tastes fine, she said, particularly the lemon flavor, but you realize that when you start to enjoy Dafalgan, you are really scraping the bottom of the barrel. True enough.
News from the lab is that the bacteria giving her trouble is an indigenous one and the very same that caused her a urinary tract infection last year May. Nothing that cannot be dealt with by antibiotics. They changed medication accordingly, but I have no specifics just yet.
Lara also receives medication to suppress nausea. She is also showing reddishness in her skin (particularly on her back) due to the chemo but the concomitant itch is mild and easily alleviated by Calendula emulsion. Her appetite has suffered. Having enjoyed a copious Easter meal at the house of friends of ours, I couldn't really help her make a dent in her supper pasta. (Later, when watching Dr House on TV, she managed to eat a fair bit of it anyway.)
We are now on Day 12 of the chemotherapy. Major blood stats cannot be expected to be back up before another 12 days have gone by. If by then she is strong enough and free of nasty complications, she will be granted homeleave before the second chemotherapy begins.
zaterdag 7 april 2012
Easter Eggs
Easter Saturday 7 April evening
Lara was doing slightly better today. As I arrived at around 1:30PM, her fever was down to 37.1C, so not unsettling. According to the sample taken early morning, her red blood cells were a bit low (2.56), and her hemoglobine as well (8.1). Her platelets stood at an all-time low of 20 (should be at 150). Nurses gave her bags of both. More importantly, as one nurse pointed out, the lab had called in to say that they had found nothing dramatic sofar, nothing that indicated staphilococci, for example, or septicimia. So that was welcome news.
Her eyes were swimming yesterday, but steady today. She was wearing one of the T-shirts I had bought her the day before at Zeeman, with a text reading "Feel Good, Make It Better". (For a three euro shirt, that seemed like a good buy.) Today, I brought her a cellophane bag with Easter eggs out of dark chocolate, wrapped individually in colored foil, with as many varieties of filling inside. She hasn't tried them yet but will tomorrow to properly celebrate Easter Sunday. Compliments of Wittamer on the Grand Sablon. (I had taken the tram down early that morning to stock up on their chocolate eggs.)
Phone calls came in from Buenos Aires (Isabel Gordillo, an old friend of Lara's and one of the witnesses at our civil wedding) and Pamplona (Liliana Schilling).
I called her at around 6:30PM and she said she was feeling devoid of any oomph, and shivering of fever, even though her temp was a round 37C only. She sounded out of breath. I promised I would check in with her every hour.
Lara was doing slightly better today. As I arrived at around 1:30PM, her fever was down to 37.1C, so not unsettling. According to the sample taken early morning, her red blood cells were a bit low (2.56), and her hemoglobine as well (8.1). Her platelets stood at an all-time low of 20 (should be at 150). Nurses gave her bags of both. More importantly, as one nurse pointed out, the lab had called in to say that they had found nothing dramatic sofar, nothing that indicated staphilococci, for example, or septicimia. So that was welcome news.
Her eyes were swimming yesterday, but steady today. She was wearing one of the T-shirts I had bought her the day before at Zeeman, with a text reading "Feel Good, Make It Better". (For a three euro shirt, that seemed like a good buy.) Today, I brought her a cellophane bag with Easter eggs out of dark chocolate, wrapped individually in colored foil, with as many varieties of filling inside. She hasn't tried them yet but will tomorrow to properly celebrate Easter Sunday. Compliments of Wittamer on the Grand Sablon. (I had taken the tram down early that morning to stock up on their chocolate eggs.)
Phone calls came in from Buenos Aires (Isabel Gordillo, an old friend of Lara's and one of the witnesses at our civil wedding) and Pamplona (Liliana Schilling).
I called her at around 6:30PM and she said she was feeling devoid of any oomph, and shivering of fever, even though her temp was a round 37C only. She sounded out of breath. I promised I would check in with her every hour.
vrijdag 6 april 2012
Feeding her Man
Good Friday 6 April evening
Lara's temp went down to 35.4C in the course of the afternoon, then shot back up to 38.4. Her cheeks are rosy with fever and she is shivering. The deputy head of the department stopped by and predicted Lara will need about three days to get rid of the temperature. Lab results will start coming in tomorrow and so we will know more acurately what is besieging her.
Other than that, a bearable itch and some nausea complete the picture.
She has no appetite, so I ate her chicken pasta and asparagus. Not bad, and a man's got to eat after all. Lara's former room mate knew for a fact that the hospital is spending 4 euros per patient per day on food.
We went our separate ways at around 7:45PM, i.e. she stayed to be lonely in her bed, and I in our apartment. It hurts us both. This really sucks.
Lara's temp went down to 35.4C in the course of the afternoon, then shot back up to 38.4. Her cheeks are rosy with fever and she is shivering. The deputy head of the department stopped by and predicted Lara will need about three days to get rid of the temperature. Lab results will start coming in tomorrow and so we will know more acurately what is besieging her.
Other than that, a bearable itch and some nausea complete the picture.
She has no appetite, so I ate her chicken pasta and asparagus. Not bad, and a man's got to eat after all. Lara's former room mate knew for a fact that the hospital is spending 4 euros per patient per day on food.
We went our separate ways at around 7:45PM, i.e. she stayed to be lonely in her bed, and I in our apartment. It hurts us both. This really sucks.
Stats
For those of you who are interested in the status of her blood at the moment, I relay the latest lab tests of 07:22AM this morning, Friday.
Red blood cells stand at 2.96/MicroL, wheras the range is 4.00-6.00. Her hemoglobin is at 27% (should be between 38 and 54%).
Her white blood cells (WBC) are at 0.07/MicroL as a result of the chemotherapy, indicating she is in full aplasia. A normal healthy person would have WBC levels in between 4.00 and 10.00/MicroL. Neutrophils are flat-out at 0.00 and so are her monocytes (an important indicator).
Blood platelets stand at 36/MicroL (should be between 150 and 350).
Lara is now in Day 10 of the chemotherapy and normally her WBC should start to come back up on Day 21. It will take several days before major blood values reach minimum levels. So for the next two weeks Lara will be exposed to risk of infection. Last year she was in a similar danger zone three times, as part of as many chemotherapies. The first episode of aplasia was longer than 30 days on account of an extra chemical agent she received (Clofarabine) and because of dangerous complications. The second episode was on schedule, while the third was super fast.
Antibiotics are crucial to fight infections, but they need to cooperate with WBC to form a winning team. So there are none for the moment. Red blood cells and platelets can be administered (and in fact have been) from a blood bank. WBC, however, have to be produced by the patient's own bone marrow. Last year, as some may remember, a particular kind of WBC, called granulocytes, were extracted from a series of specially selected donors to help prop up Lara's immune defense. The result was mixed. No such procedures are foreseen at the present time. The production of granulocytes can be chemically stimulated by injections of Neupogen, but it is simply too early for that.
Red blood cells stand at 2.96/MicroL, wheras the range is 4.00-6.00. Her hemoglobin is at 27% (should be between 38 and 54%).
Her white blood cells (WBC) are at 0.07/MicroL as a result of the chemotherapy, indicating she is in full aplasia. A normal healthy person would have WBC levels in between 4.00 and 10.00/MicroL. Neutrophils are flat-out at 0.00 and so are her monocytes (an important indicator).
Blood platelets stand at 36/MicroL (should be between 150 and 350).
Lara is now in Day 10 of the chemotherapy and normally her WBC should start to come back up on Day 21. It will take several days before major blood values reach minimum levels. So for the next two weeks Lara will be exposed to risk of infection. Last year she was in a similar danger zone three times, as part of as many chemotherapies. The first episode of aplasia was longer than 30 days on account of an extra chemical agent she received (Clofarabine) and because of dangerous complications. The second episode was on schedule, while the third was super fast.
Antibiotics are crucial to fight infections, but they need to cooperate with WBC to form a winning team. So there are none for the moment. Red blood cells and platelets can be administered (and in fact have been) from a blood bank. WBC, however, have to be produced by the patient's own bone marrow. Last year, as some may remember, a particular kind of WBC, called granulocytes, were extracted from a series of specially selected donors to help prop up Lara's immune defense. The result was mixed. No such procedures are foreseen at the present time. The production of granulocytes can be chemically stimulated by injections of Neupogen, but it is simply too early for that.
Complications
Good Friday 6 April, midday
I was on the phone with Lara at about 8:30AM and she sounded pretty weak. Things hadn't exactly gotten better since we spoke shortly after midnight. So what happened?
Round about the time that our friend Caroline de Gruyter dropped by for an evening visit, last night, Thursday, Lara developed a temperature and she started shivering with fever. One has to understand that Lara normally temps at around 36C or lower and that 37C, for her, is already elevated. However, like last year, the nurses here are so fixated on the 37 level that they won't even call a doctor. They are programmed to do so only when a patient clocks at 38C! So Lara had to get sicker first before action was taken. Go figure.
This morning around 7:00AM her temp had risen to 39.4! That is a steep temp for an adult, and a fortiori for Lara. A few hours before she had been put on two different antibiotics to fight a stomach/intestinal infection: Ceftazidime, Clindamycin, plus of course glucose and natrium chloride. Right now, she is too weak to get up from her bed and has to be helped with all basic functions. She looks like a high-end dish rag. No appetite for breakfast. Couldn't keep it down this morning. Her CRP was slightly up at 7:30AM (1.4) compared to yesterday's 0.04. The antibiotics and the Dafalgan have made her feel a little better, but she prefers to just rest. She also felt pressure on her chest, but signalled it is better now. Samples of everything have been sent to the lab.
Round about midday the doctors (unfamiliar faces to me, weekend staff) came by. They were reassuring, saying that nine out of ten patients in chemotherapy contract some kind of infection like this in this stage of the treatment, i.e. the onset of aplasia. Her temp was down to 37.0C.
Just so you know: Ceftazidime is a broad-spectrum antibiotic for both Gram-positive and Gram-negative bacteria. Together with Clindamycin (effective against anaerobic infections; look it up) they seem to cover pretty much everything that could be wrong in Lara's intestines. Culturing out samples will take two days, and test results will possibly lead to to more specific antibiotics once doctors know what animal they are dealing with.
I was on the phone with Lara at about 8:30AM and she sounded pretty weak. Things hadn't exactly gotten better since we spoke shortly after midnight. So what happened?
Round about the time that our friend Caroline de Gruyter dropped by for an evening visit, last night, Thursday, Lara developed a temperature and she started shivering with fever. One has to understand that Lara normally temps at around 36C or lower and that 37C, for her, is already elevated. However, like last year, the nurses here are so fixated on the 37 level that they won't even call a doctor. They are programmed to do so only when a patient clocks at 38C! So Lara had to get sicker first before action was taken. Go figure.
This morning around 7:00AM her temp had risen to 39.4! That is a steep temp for an adult, and a fortiori for Lara. A few hours before she had been put on two different antibiotics to fight a stomach/intestinal infection: Ceftazidime, Clindamycin, plus of course glucose and natrium chloride. Right now, she is too weak to get up from her bed and has to be helped with all basic functions. She looks like a high-end dish rag. No appetite for breakfast. Couldn't keep it down this morning. Her CRP was slightly up at 7:30AM (1.4) compared to yesterday's 0.04. The antibiotics and the Dafalgan have made her feel a little better, but she prefers to just rest. She also felt pressure on her chest, but signalled it is better now. Samples of everything have been sent to the lab.
Round about midday the doctors (unfamiliar faces to me, weekend staff) came by. They were reassuring, saying that nine out of ten patients in chemotherapy contract some kind of infection like this in this stage of the treatment, i.e. the onset of aplasia. Her temp was down to 37.0C.
Just so you know: Ceftazidime is a broad-spectrum antibiotic for both Gram-positive and Gram-negative bacteria. Together with Clindamycin (effective against anaerobic infections; look it up) they seem to cover pretty much everything that could be wrong in Lara's intestines. Culturing out samples will take two days, and test results will possibly lead to to more specific antibiotics once doctors know what animal they are dealing with.
donderdag 5 april 2012
Neutrophiliac
Thursday 5 April
It seems that iPad does not support Blogspot very smoothly. Lara wrote a rather upbeat post, this afternoon, but somehow things got screwed up and her writing is believed to be lost in cyberspace. She was saying that sofar things went relatively smoothly and that her blood stats were now all set to climb out of the aplasia.
What she didn't know is that matters would take a turn for the worse, later that same day. She kept the news from me all evening while I was in Antwerp, and only told me over the phone at around 00:30AM in my hotel. No need to upset you and spoil your evening she commented.
It seems that iPad does not support Blogspot very smoothly. Lara wrote a rather upbeat post, this afternoon, but somehow things got screwed up and her writing is believed to be lost in cyberspace. She was saying that sofar things went relatively smoothly and that her blood stats were now all set to climb out of the aplasia.
What she didn't know is that matters would take a turn for the worse, later that same day. She kept the news from me all evening while I was in Antwerp, and only told me over the phone at around 00:30AM in my hotel. No need to upset you and spoil your evening she commented.
woensdag 4 april 2012
Scared
Wednesday 4 April
Lara is doing fine for the moment, no particular drawbacks apparent, apart from a mild hitch. If we keep it like that, she'll be doing fine. However, we are not loosing sight of the fact that leukemia patients in a fully blown chemo lead a fickle existence, healthwise. Things can deteriorate in a matter of hours. We've been there, after all. Last year, things took a sudden turn for the worse, nine days after the start of the chemo. We are now on day eight...
But this is not our focus for the time being. We are both a little scared, but try not to give into it too much. Instead, we live on the assumption everything will be OK and that is what we keep telling eachother.
Her new room mate is an elderly lady, there since this afternoon, unannounced, no introductions made.
Lara is doing fine for the moment, no particular drawbacks apparent, apart from a mild hitch. If we keep it like that, she'll be doing fine. However, we are not loosing sight of the fact that leukemia patients in a fully blown chemo lead a fickle existence, healthwise. Things can deteriorate in a matter of hours. We've been there, after all. Last year, things took a sudden turn for the worse, nine days after the start of the chemo. We are now on day eight...
But this is not our focus for the time being. We are both a little scared, but try not to give into it too much. Instead, we live on the assumption everything will be OK and that is what we keep telling eachother.
Her new room mate is an elderly lady, there since this afternoon, unannounced, no introductions made.
dinsdag 3 april 2012
Aplasia
Tuesday 3 April
Lara is sinking deeper and deeper into aplasia, while supported by extra red blood cells and platelets. She also receives glucose and other fluids. Apart from a light itch, she is not troubled by too much discomfort. Her room mate has checked out of the hospital, so at least for one night Lara has the room to herself.
Keep your fingers ccrossed.
Lara is sinking deeper and deeper into aplasia, while supported by extra red blood cells and platelets. She also receives glucose and other fluids. Apart from a light itch, she is not troubled by too much discomfort. Her room mate has checked out of the hospital, so at least for one night Lara has the room to herself.
Keep your fingers ccrossed.
maandag 2 april 2012
No News
Monday 2 April
No special developments to report today. Yesterday, the chemo therapy came to an end. Today or tomorrow she will enter aplasie. Lara is nervous about it and at times even scared, emotions dulled by a steady supply of Xanax (low doses). What unnerved her is that today she learned through a nurse that the two principal treating physicians had left on a two-week vacation. Without a single word to their patients. Not very cooth. Consequently, Lara receives bedside visits by doctors unknown to her. Not confidence inspiring at a time when confidence is key.
Unbeknowst to me, Lara confided in Andreina, this afternoon. "I am going to die", Lara had told her emphatically. The statement was one of fact. She apparently had this premonition. She made Andreina swear to secrecy vis-a-vis me. "Don't tell Toine!" Always protective towards me, it wasn't the first time she had kept bad news from me and shared it with her best friends.
No special developments to report today. Yesterday, the chemo therapy came to an end. Today or tomorrow she will enter aplasie. Lara is nervous about it and at times even scared, emotions dulled by a steady supply of Xanax (low doses). What unnerved her is that today she learned through a nurse that the two principal treating physicians had left on a two-week vacation. Without a single word to their patients. Not very cooth. Consequently, Lara receives bedside visits by doctors unknown to her. Not confidence inspiring at a time when confidence is key.
Unbeknowst to me, Lara confided in Andreina, this afternoon. "I am going to die", Lara had told her emphatically. The statement was one of fact. She apparently had this premonition. She made Andreina swear to secrecy vis-a-vis me. "Don't tell Toine!" Always protective towards me, it wasn't the first time she had kept bad news from me and shared it with her best friends.
zondag 1 april 2012
Chemo
Sunday 1 April
This is my fourth day of chemo. Yesterday went a little less well with one of the two medications that has been given to me on day 1 and 4. Due to the reaction, I think it is not a placebo, though we can't be completely sure. Otherwise OK. Tomorrow begins the period of aplasia, i.e. no white blood cells to protect me from infection. Infection is my great fear.
Leukemia is not like many other cancers. It is not a question of metastases, stage 1,2,3 or 4. You don't catch it early. One gets the disease and then it has to be treated. A relapse is obviously not a good thing, but it is not a sign that the cancer has 'spread'. It needs to be treated all over again with the hope that it can be knocked out without knocking me off. And then that it NEVER comes back. A bone marrow transplant may give me some added protection; how much we don't know. For now, the question remains hypothetical with three chemos to get through. After that, we'll see. A transplant is not a 'sure cure' and getting through the chemo's is my main task for now. If all goes well, I get a break and go home between cures. The treatment is tough, unsure and yet I must depend on it.
I look out my window and see spring arrive. There's a flowering fruit tree just outside and I remember back to Easter a year ago when Hanneke made me my first baby spoon of real food: blended asparagus and a sliver of a dark chocolate egg. Today I eat real food: St. Luke's two-star delicacies and I can complain with a voice. Aaahh progress.
We both had to miss out on Madelief's first birthday party at Bouke and Merel's house. Toine wanted to spend the afternoon with me, and frankly, I was glad he did. I am starting to freak out a little bit when looking at the weeks ahead, and I needed my man to keep me in my comfort zone. We sang happy birthday over the phone - well, sort of.
Thank you all for your calls and messages which keep me going.
This is my fourth day of chemo. Yesterday went a little less well with one of the two medications that has been given to me on day 1 and 4. Due to the reaction, I think it is not a placebo, though we can't be completely sure. Otherwise OK. Tomorrow begins the period of aplasia, i.e. no white blood cells to protect me from infection. Infection is my great fear.
Leukemia is not like many other cancers. It is not a question of metastases, stage 1,2,3 or 4. You don't catch it early. One gets the disease and then it has to be treated. A relapse is obviously not a good thing, but it is not a sign that the cancer has 'spread'. It needs to be treated all over again with the hope that it can be knocked out without knocking me off. And then that it NEVER comes back. A bone marrow transplant may give me some added protection; how much we don't know. For now, the question remains hypothetical with three chemos to get through. After that, we'll see. A transplant is not a 'sure cure' and getting through the chemo's is my main task for now. If all goes well, I get a break and go home between cures. The treatment is tough, unsure and yet I must depend on it.
I look out my window and see spring arrive. There's a flowering fruit tree just outside and I remember back to Easter a year ago when Hanneke made me my first baby spoon of real food: blended asparagus and a sliver of a dark chocolate egg. Today I eat real food: St. Luke's two-star delicacies and I can complain with a voice. Aaahh progress.
We both had to miss out on Madelief's first birthday party at Bouke and Merel's house. Toine wanted to spend the afternoon with me, and frankly, I was glad he did. I am starting to freak out a little bit when looking at the weeks ahead, and I needed my man to keep me in my comfort zone. We sang happy birthday over the phone - well, sort of.
Thank you all for your calls and messages which keep me going.
CAMs
Nobody wants to get sick. But once you do, you want to be in the right place: people are happier to be ill in a first rate hospital with state-of-the-art care. You may enter, as Lara did, in a dire condition, doing battle with a disease that will kill you if left untreated correctly. A lot of people (doctors, paramedics, nurses, support staff), over many months last year, spent a lot of resources on getting her in full remission and with her lungs on the mend; she has a lot to be grateful for. Still, being an acute leukemia patient, one wonders if treatment needs to be limited to chemotherapy, irradiation and bone marrow transplants. And why does collateral damage of the treatment - in Lara’s case respiratory problems - need to be relegated and confined to physical therapy? For those are the only things Lara’s treating hematologists refer to. Their attitude follows the dictates of established practice. True, they are plugged directly into the vanguard of scientific innovation. But is that all there is to it? Outside these conventional methods lies a whole field called ‘complementary and alternative medicine’. Known as ‘CAM’, doctors at the hospital never even mention it. Why? We had to find out for ourselves.
Without a doubt, CAM is a huge field rife with unsubstantiated claims and do-gooders, as well as charlatans and quacks. Quackery, to be sure, is not merely a medieval phenomenon or about snake-skin oil from the Wild West. Look at the Internet and be amazed what is on offer to the gullible and desperate. (A Dr Ringold promises his mineral pills will help men with erectile dysfunction.) So it is easy to see why mainstream doctors are prone to dismiss the whole terrain. As does my best friend, a physician, who writes off the entire remit of homeopathy until he has seen convincing scientific evidence that shows replicable benefits. What they seem to overlook is that over 180,000 doctors in the European Union have been trained or educated in one or more CAM modalities. In ten EU Member States, government administered regulation of CAM is in place; in Belgium since 1999.
Without a doubt, CAM is a huge field rife with unsubstantiated claims and do-gooders, as well as charlatans and quacks. Quackery, to be sure, is not merely a medieval phenomenon or about snake-skin oil from the Wild West. Look at the Internet and be amazed what is on offer to the gullible and desperate. (A Dr Ringold promises his mineral pills will help men with erectile dysfunction.) So it is easy to see why mainstream doctors are prone to dismiss the whole terrain. As does my best friend, a physician, who writes off the entire remit of homeopathy until he has seen convincing scientific evidence that shows replicable benefits. What they seem to overlook is that over 180,000 doctors in the European Union have been trained or educated in one or more CAM modalities. In ten EU Member States, government administered regulation of CAM is in place; in Belgium since 1999.
Take acupuncture. As recent as a few decades ago, the practice was associated with the lesser parts of town and dubious second floor studios with a Chinese restaurant on the ground floor and a ditto laundry in the basement. No longer so. Acupuncture, in a country like Belgium, has been stiffly government regulated for the last thirteen years. It is recognized as a distinct therapeutic system in twelve EU Member States. Lara’s acupuncturist took an MD here at Louvain University and specialized in traditional Asian medicine during a five year sojourn in China and Japan. At her reception desk, before you have even told the doctor what you came to see her about, you put a finger in a machine and it measures your aura, displaying it in a multicolor print, front and sideways. The treatments mark visible differences in successive displays. (It is a Korotkov GDV camera; GDV stand for Gas Discharge Visualization). Lara feels better every time she goes there. Her breathing improves and even her blood stats did, too. Still, Lara mentioned the treatments to her hematologist once, and seeing her reaction, decided to keep ensuing treatments to herself.
Take nutrition. It is estimated that half of cancers are caused by what we eat. Nutrition is not only about not eating certain things, but also about the positive effect on health of eating the right things. Lara found a doctor here in Brussels who has specialized in that part of her profession. She was trained in Israel and has uncovered astounding deficiencies in Lara’s chemical make-up (if I may call it that). Again, nobody in Saint Luke referred to her or any of her colleagues, as if conventional doctors are blind-sided.
While you are in a hospital, you can forget about CAM doctors coming to your hospital room. They simply don’t venture inside the building. Recommended by a dear friend, we tried to summon a homoeopathist to Lara’s bedside during her third chemotherapy. He reneged.
After release from a clinic, it doesn’t get any easier. Finding complementary medical treatment in the aftermath of a hospital stay is no simple matter. Where do you go? Which doctor do you turn to? Whom can you trust? Which raises the question, why is it left up to patients - some more resourceful than others - to seek alternative or complementary help? Imagine if conventional and alternative practitioners could accept to bond like opposite poles. How powerful a union that would make! Think of the benefits it would bring to the patients. Instead, the two seem to repel each other like the same poles of different magnets.
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