Sunday 6 May
Once Lara was washed and prepared for a power day, we had a late breakfast together, over the dining table, and conducted a conversation as normally we would. About the French and Greek elections, for example. Caroline de Gruyter brought over a polenta/almond/lemon cake and set it out with powdered sugar. The two ladies are engaged in a lively chat as I write this.
Doctor Schroyens, the homeopathist, called in to hear about the situation, having read my emails over the past several days. We are staying with the present dose of medication until Wednesday. Then, on the basis of the blood sample results, he will adjust the therapy.
At around 3:00PM my sister Hanneke and her husband came over with my mam and my daughter. I was glad I had the cake to serve with tea, which they all loved. We sat around the bed and talked at an easy pace. Lara had put her favorite ring on plus some black onyx earrings, just to get an edge (which she would need; see below). At the last minute, when our visitors were already in the elevator up, she wanted her pink turban, but I couldn't find it anywhere.
We all looked at the hematoma connecting the abrasions above Lara's right brow and on her cheekbone, and wondered why none of the doctors had checked her for a concussion. She must have hit her head pretty hard (on the ground? against the dining table or her bed?) with the little control over her neck muscles that she had. Tell tale signs like sensitivity to light were not picked up on. Anyway, symptoms begin to recede now. She checked her face in a handmirror for the first time in weeks, including the bruises. "Jeez", she said under her breath.
The vistors from Breda left at 4:00PM as promised and by that time Lara had really had it. She has been napping since then, interrupted by one last visitor for the day. Apart from the nurse who will come by later.
After a few phone calls the oxygen company came by to deliver two new masks as promised. I was out shopping at the corner supermarket. The technicien adjusting the mask - a friendly clot without much training in social graces, by his own admission - talked to Lara and referred to me as "your son"! That hurt. Then, trying to get his foot out of his mouth again, the poor bloke made it worse by saying "But you look a lot older than him." Ay, that hurt even more. Please leave; like rightaway.
The masks are sturdier, especially the airbag part, and therefore take quite a bit of time to assume an accomodating form. We upped the pressure to 9 liters a minute again just to get her started. Then we will gradually diminish down to 6 liters/minute. It all boils down to trust and confidence. Still she feels a little lightheaded.
I made some warm soup and then we will split come Thai chicken with red curry. Which pretty much takes care of the evening.
zondag 6 mei 2012
zaterdag 5 mei 2012
Liberation Day
Saturday 5 May
Lara spent a quiet night throughout, breathing nice and easy. The day was filled almost back to back with a few visitors, plus the nurse and the doctor, leaving her precious few hours to nap and rekindle her energy. I recharged by going to the gym.
We discussed with the doctor about medication and oxygen. The result is that effective immediately, oxygen is taken down from 9 to 6 liters a minute on a trial basis, and that as from Monday her morphine will be gradually lowered from 20 mg (truly a base dose to begin with) to probably around 12.5 mg, and so will the Tranxen be. Also, we cancelled the scheduled trip to the hospital on Monday and rescheduled for Wednesday.
Something else.
Lara's oxygen high output concentrator comes, as I have described, with a face mask. The mask's main feature is a plastic bag that hangs down from the front where the oxygen filters in from the machine, making it taut. The oxygen Lara breathes comes from that little bag through a valve that opens when she inhales, and closes when she exhales allowing the carbon dioxide to escape through two little valves in the sides of the mask. All these little elements should of course operate flawlessly.
For those of you who haven't stopped reading by now: this is where things went wrong around 6:30PM this evening. It turned out that in the mask she was wearing, the little bag had sprung a leak. In the replacement mask, a sturdier model, the valve at the top of the bag was missing. Two masks out of service. Luckily we had a third one, which did work. Still we called the company (24/7 service), since we didn't want to go on without a back-up mask. Lara is sensitive when it comes to lack of oxygen (and so everybody else should be). The company technician brought a spare one (a model without a bag, but okay). Two more will be delivered tomorrow afternoon.
While a friend of hours was visiting, Mary Pitsy, I felt a headache and later a chill coming up. I don't care to contract anything right now, so I took acyclovir and dafalgan. The cotton stuffing in my head doesn't hark well.
Lara spent a quiet night throughout, breathing nice and easy. The day was filled almost back to back with a few visitors, plus the nurse and the doctor, leaving her precious few hours to nap and rekindle her energy. I recharged by going to the gym.
We discussed with the doctor about medication and oxygen. The result is that effective immediately, oxygen is taken down from 9 to 6 liters a minute on a trial basis, and that as from Monday her morphine will be gradually lowered from 20 mg (truly a base dose to begin with) to probably around 12.5 mg, and so will the Tranxen be. Also, we cancelled the scheduled trip to the hospital on Monday and rescheduled for Wednesday.
Something else.
Lara's oxygen high output concentrator comes, as I have described, with a face mask. The mask's main feature is a plastic bag that hangs down from the front where the oxygen filters in from the machine, making it taut. The oxygen Lara breathes comes from that little bag through a valve that opens when she inhales, and closes when she exhales allowing the carbon dioxide to escape through two little valves in the sides of the mask. All these little elements should of course operate flawlessly.
For those of you who haven't stopped reading by now: this is where things went wrong around 6:30PM this evening. It turned out that in the mask she was wearing, the little bag had sprung a leak. In the replacement mask, a sturdier model, the valve at the top of the bag was missing. Two masks out of service. Luckily we had a third one, which did work. Still we called the company (24/7 service), since we didn't want to go on without a back-up mask. Lara is sensitive when it comes to lack of oxygen (and so everybody else should be). The company technician brought a spare one (a model without a bag, but okay). Two more will be delivered tomorrow afternoon.
While a friend of hours was visiting, Mary Pitsy, I felt a headache and later a chill coming up. I don't care to contract anything right now, so I took acyclovir and dafalgan. The cotton stuffing in my head doesn't hark well.
vrijdag 4 mei 2012
But Not Carried Away
Friday 4 May around midday
I remember cautioning last year against undue optimism. People are inclined - out of the goodness of their hearts - to extrapolate an upward trend or a finer moment in a patient's history and conclude that things have started to change for the better. The reverse is not necessarily true either: if patients have a bad day for once, it doesn't mean they are inexorably headed for the end. Patients have ups and downs, and both provide a feeble base for making firm predictions.
Of course, everybody rejoices after reading my previous post, but let's not get carried away. The odds are still pretty stiff. Lara has low levels of platelets, decent but sinking levels of red blood cells and almost no leukocytes (WBC). Her defense immune system is essentially absent. She needs regular blood transfusions to keep her going, since the leukemic cells in het bone marrow drown out the production of home made bloodcells. Antiobiotics and supportive medication keep her at a bearable level. So do 20 mg of morphine and a tranquilizer (Tranxen). She has lost considerable weight and will lose more.
The question is rather if her present condition is a winnable one. Friends compare the present situation to the one when she was in the ICU last year. They might be wrong. There is a salient and dramatic difference. Last year, even at the worst moments when she was about to die of pneumonia, Lara was in full remission and would essentially remain so until January this year. Today Lara is contending with rampant leukemia which is not going to lessen spontaneously and against which there is no medication. None. The last time doctors took a look, her bone marrow cells were 80% bad!
It pains me to have to dampen people's enthusiasm. Believe me, I would wish it to be different, too.
I remember cautioning last year against undue optimism. People are inclined - out of the goodness of their hearts - to extrapolate an upward trend or a finer moment in a patient's history and conclude that things have started to change for the better. The reverse is not necessarily true either: if patients have a bad day for once, it doesn't mean they are inexorably headed for the end. Patients have ups and downs, and both provide a feeble base for making firm predictions.
Of course, everybody rejoices after reading my previous post, but let's not get carried away. The odds are still pretty stiff. Lara has low levels of platelets, decent but sinking levels of red blood cells and almost no leukocytes (WBC). Her defense immune system is essentially absent. She needs regular blood transfusions to keep her going, since the leukemic cells in het bone marrow drown out the production of home made bloodcells. Antiobiotics and supportive medication keep her at a bearable level. So do 20 mg of morphine and a tranquilizer (Tranxen). She has lost considerable weight and will lose more.
The question is rather if her present condition is a winnable one. Friends compare the present situation to the one when she was in the ICU last year. They might be wrong. There is a salient and dramatic difference. Last year, even at the worst moments when she was about to die of pneumonia, Lara was in full remission and would essentially remain so until January this year. Today Lara is contending with rampant leukemia which is not going to lessen spontaneously and against which there is no medication. None. The last time doctors took a look, her bone marrow cells were 80% bad!
It pains me to have to dampen people's enthusiasm. Believe me, I would wish it to be different, too.
Going for a Walk
Friday 4 May morning
As soon as Ilona (our household help) arrived this morning, Lara motioned her over and gave extensive instructions on where to to start with what and by what time - as she would normally do. Then we had breakfast together, which included fresh fruit, muesli, soya yoghurt, red berry juice, plus a cup of my revered cappuccino. Meanwhile we discussed the order of the day. She asked me to call a friend in Frankfurt and make plans for her to come and visit, now that she felt better. All the while she breathed without a mask for at least one half hour. And to top it off, she wanted to go for a brief walk around the room, without oxygen supply.
As I write this, she suddenly appears in the kitchen with her Baxter, the soignante in tow, and comments that the place is a mess, and that I should clean it up. "There is stuff everywhere!"
I can still hear her commenting from the hallway, as she proceeded to visit her own familiar bathroom. Amazing.
As soon as Ilona (our household help) arrived this morning, Lara motioned her over and gave extensive instructions on where to to start with what and by what time - as she would normally do. Then we had breakfast together, which included fresh fruit, muesli, soya yoghurt, red berry juice, plus a cup of my revered cappuccino. Meanwhile we discussed the order of the day. She asked me to call a friend in Frankfurt and make plans for her to come and visit, now that she felt better. All the while she breathed without a mask for at least one half hour. And to top it off, she wanted to go for a brief walk around the room, without oxygen supply.
As I write this, she suddenly appears in the kitchen with her Baxter, the soignante in tow, and comments that the place is a mess, and that I should clean it up. "There is stuff everywhere!"
I can still hear her commenting from the hallway, as she proceeded to visit her own familiar bathroom. Amazing.
donderdag 3 mei 2012
Chicken Broth
Thursday 3 May
As from this morning, we had the impression that, unbeknownst to us, the dosage of morphine had been halved, from 20 mg per day to 10 mg per day. Lara was lucid as ever and interacted like we hadn't seen her do in days. She was able to articulate views about sensitive and morally charged issues with her treating physician, the head nurse and my old friend Gert-Jan, the doctor (who had stayed over night). Later she would similarly engage other passing friends in conversation, such as Helene de Merode, Caroline de Gruyter and Sylvie Girard (who, too, had stayed over night). Lara ate apple and orange, plus a full bowl of Andreina's lentils and pasta dish.
It turned out that she is still on 20 mg of morphine per day, but that perhaps a lower dosage may be contemplated as from tomorrow. Strange how the human mind works.
After so many caring women had lived in our kitchen for several days, the refrigerator had turned into a virtual biotope, where - I swear - I saw things whisk away as I opened the door. Andreina took a good hour last night to save the edibles from among the way-past-expiration substances, and threw away the dubitables, while leaving some freshly cooked meal items of her own. Where would we be without her.
We are looking forward to Sylvie's chicken broth tonight.
As from this morning, we had the impression that, unbeknownst to us, the dosage of morphine had been halved, from 20 mg per day to 10 mg per day. Lara was lucid as ever and interacted like we hadn't seen her do in days. She was able to articulate views about sensitive and morally charged issues with her treating physician, the head nurse and my old friend Gert-Jan, the doctor (who had stayed over night). Later she would similarly engage other passing friends in conversation, such as Helene de Merode, Caroline de Gruyter and Sylvie Girard (who, too, had stayed over night). Lara ate apple and orange, plus a full bowl of Andreina's lentils and pasta dish.
It turned out that she is still on 20 mg of morphine per day, but that perhaps a lower dosage may be contemplated as from tomorrow. Strange how the human mind works.
After so many caring women had lived in our kitchen for several days, the refrigerator had turned into a virtual biotope, where - I swear - I saw things whisk away as I opened the door. Andreina took a good hour last night to save the edibles from among the way-past-expiration substances, and threw away the dubitables, while leaving some freshly cooked meal items of her own. Where would we be without her.
We are looking forward to Sylvie's chicken broth tonight.
woensdag 2 mei 2012
Gracias a la vida
Wednesday 2 May
An early rise. At 7:00AM the nurse rang the door bell, ready to get Lara prepared for yet another visit to the hospital. Transfusion day. The two of us took time to eat breakfast and enjoy our Lavazza Top Class cappuccinos.
The ambulance came by at 9 :10AM and at 9:45AM we were at the hematology day care clinic of Saint Luke's. With nauseating dexterity the ambulance driver (his name was Gabriel), negotiated the morning's peak hour traffic, using all his horns and sirens. Lara asked me if I could make him tone it down a bit. I passed on the message but the young man stuck to his guns. "Without them, it would take us an hour to get to the hospital, he said, so I really need the horns. The other day, he explained, "I tried Brahm's No. 2 Piano Concerto, but without any effect!" At least one person showing a sense of humor.
At 10:00AM a blood sample was taken, and then the waiting game began. For over three hours, we had to wait until finally one measily batch of platelets had arrived, which took barely 20 minutes to disappear into her bloodstream. We were home by about 4:00PM, Lara completely exhausted.
Gert-Jan, my old friend, had taken two days leave to come and stay with us, engaging Lara in converstaion about her condition, disucssing diagnosis and prognosis with equal clarity and transprarence. Not an optimistic story line, but at least a realistic one. It is good for me to have someone to keep me company.
As I write, Lara is reclining in the living room. Andreina will pass by to cook one of Lara's favorite Italian dishes. Hopefully she will have mustered some appetite by then, for she skipped lunch altogether. I ate hers, in fact.
As she was resting peacefully, I put on a record by Joanie Baez, one of Lara's favorite singers (the two knew eachother). "Gracias a la vida" was the first number. "Thank you to Life". We have often sung it together, at the top of our voices.
It is at moments like these, that tears are right up against the back of my eyes.
Sylvie Girard is due to arrive at the apartment, and old friend from the Honduran refugee camps. I told Lara yesterday she would be coming, but I bet that meanwhile it slipped her mind. Another surprise encounter lies in store for my sweet one.
An early rise. At 7:00AM the nurse rang the door bell, ready to get Lara prepared for yet another visit to the hospital. Transfusion day. The two of us took time to eat breakfast and enjoy our Lavazza Top Class cappuccinos.
The ambulance came by at 9 :10AM and at 9:45AM we were at the hematology day care clinic of Saint Luke's. With nauseating dexterity the ambulance driver (his name was Gabriel), negotiated the morning's peak hour traffic, using all his horns and sirens. Lara asked me if I could make him tone it down a bit. I passed on the message but the young man stuck to his guns. "Without them, it would take us an hour to get to the hospital, he said, so I really need the horns. The other day, he explained, "I tried Brahm's No. 2 Piano Concerto, but without any effect!" At least one person showing a sense of humor.
At 10:00AM a blood sample was taken, and then the waiting game began. For over three hours, we had to wait until finally one measily batch of platelets had arrived, which took barely 20 minutes to disappear into her bloodstream. We were home by about 4:00PM, Lara completely exhausted.
Gert-Jan, my old friend, had taken two days leave to come and stay with us, engaging Lara in converstaion about her condition, disucssing diagnosis and prognosis with equal clarity and transprarence. Not an optimistic story line, but at least a realistic one. It is good for me to have someone to keep me company.
As I write, Lara is reclining in the living room. Andreina will pass by to cook one of Lara's favorite Italian dishes. Hopefully she will have mustered some appetite by then, for she skipped lunch altogether. I ate hers, in fact.
As she was resting peacefully, I put on a record by Joanie Baez, one of Lara's favorite singers (the two knew eachother). "Gracias a la vida" was the first number. "Thank you to Life". We have often sung it together, at the top of our voices.
It is at moments like these, that tears are right up against the back of my eyes.
Sylvie Girard is due to arrive at the apartment, and old friend from the Honduran refugee camps. I told Lara yesterday she would be coming, but I bet that meanwhile it slipped her mind. Another surprise encounter lies in store for my sweet one.
dinsdag 1 mei 2012
Labor Day
"I thought I was hallucinating". Lara was telling Helene de Merode how two of her dearest friends, John and Marie, had come waltzing in the room unexpectedly, the day before. The freshness of the memory brought tears back to her eyes. "I just couldn't believe that my little John was actually standing at my side, grinning from ear to ear. I thought the morpihine was kicking in." But Helene was already aware of the episode; she had read the blog and joined Lara in the delight of reliving the moment.
Lara and I had just had breakfast together when Helene stopped by (she lives a ten minute walk away). We both ate muesli, soya yoghurt, tangerine, apple and a fine cappu. Not a bad meal for a sick person. Helene brought her three pictures of her own birthday luncheon in Neffe, in the beginning of March.
As I write this, I am sitting on Lara's bed along her right side, her head against my left shoulder, her right hand loosely wrapped around my left arm. She is asleep, breathing deep and steady. The scene is so familiar and her closeness feels so natural, that I cannot imagine this will soon come to an end. There has to be a sequel; it simply cannot end like this. Similarly, the photos we were just given: Lara looked alive and smiling with conviction, her head tilted back, good posture. That was barely two months ago. No sense of something finite. And the photo taken on 18 March, on my mother's birthday. Lara and I flank Ma, sitting on a couch in my sister's flat, full of smiles.
And still, just before breakfast she confided: " I have the feeling I am slipping away; that my strength is failing me." As if to make the point, she couldn't manage to do our little world riddle we solve every morning of the week. The morphine catches up on her, even though the dose is still the same. Why don't you call the doctor, she suggested, for I may be passing on soon. I desisted. Let me measure your stats, for that is the irst thing a doctor will ask about, Saturation 98, pulse of 71, pressure 91 over 58 (Lara's average), regular breathing, no pain or discomfort. I told Lara that no doctor would jump in a car and race towards your bedside especiallly now, on a national holiday (1 May).
She shrugged,
Lara and I had just had breakfast together when Helene stopped by (she lives a ten minute walk away). We both ate muesli, soya yoghurt, tangerine, apple and a fine cappu. Not a bad meal for a sick person. Helene brought her three pictures of her own birthday luncheon in Neffe, in the beginning of March.
As I write this, I am sitting on Lara's bed along her right side, her head against my left shoulder, her right hand loosely wrapped around my left arm. She is asleep, breathing deep and steady. The scene is so familiar and her closeness feels so natural, that I cannot imagine this will soon come to an end. There has to be a sequel; it simply cannot end like this. Similarly, the photos we were just given: Lara looked alive and smiling with conviction, her head tilted back, good posture. That was barely two months ago. No sense of something finite. And the photo taken on 18 March, on my mother's birthday. Lara and I flank Ma, sitting on a couch in my sister's flat, full of smiles.
And still, just before breakfast she confided: " I have the feeling I am slipping away; that my strength is failing me." As if to make the point, she couldn't manage to do our little world riddle we solve every morning of the week. The morphine catches up on her, even though the dose is still the same. Why don't you call the doctor, she suggested, for I may be passing on soon. I desisted. Let me measure your stats, for that is the irst thing a doctor will ask about, Saturation 98, pulse of 71, pressure 91 over 58 (Lara's average), regular breathing, no pain or discomfort. I told Lara that no doctor would jump in a car and race towards your bedside especiallly now, on a national holiday (1 May).
She shrugged,
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