donderdag 31 mei 2012

Lugano 2008


2008

Just South of the Alps, at a mere 270 meters altitude, sits one of the finest lakes of Southern Switzerland and Northern Italy: lake Lugano. In the summer of 2008, when living in Vienna, we took a ten-day tour in the region stretching from Liechtenstein to Milan to Lago di Garda. At one point we ended up in Campione d'Italia, on the other side of the lake from Lugano. It is a small Italian enclave in Switzerland, and a well-known tax haven, where the lingua Franca is Italian and Russian. I remember a wonderful little hotel with a gorgeous view over the water. Water is Lara's alltime favorite element.

This picture was taken at the breakfast table.




Leopold

Thursday 31 May

A sound night's sleep followed by a day with less energy and prolonged naps. It is now 3:30PM and Lara has been sleeping several hours all in all since she first woke up. Doctor Willemot came by and found her vital signs in order. The results of the blood test were all pointing in the right direction, except for the platelets. (No news there.)

Her blood pressure is down to 85 over 50, which is not totally unusual for Lara, but admittedly low. Her vertigo, standing next to her bed, was the first and, so far, only occurrence of its kind. To be followed up. The usual nausea, and of course the dry coughs were in attendance, but mitigated by various medication. No saignements, no pain, breathing still OK (supported by 6 liters of oxygen a minute).

Virtually half of her black little stubbles have now disappeared and where they have, soft blond hairs have begun to grow back out. Fuzz. 

At around 4:00PM she had about half a bowl of soya yoghurt with half a banana. Only to lose it again twenty minutes later. Eating, nausea and keeping her food down are determinants of her overall condition as they control nutritional uptake. With her low blood quality, and the absence of transfusions, she needs nourishment somehow.

I went for a walk in muggy weather and ended up in a narrow side chapel of the medieval Abbaye de la Cambre, across from our apartment. I meditated for half an hour in total quietude and it restored some piece of mind.

By 6:00PM I will attend a ceremony where our friend Jacqueline Moens de Fernig will be made a Knight in the Order of Leopold, the decoration being pinned on her by my old friend Mark Eyskens, former Prime Minister of Belgium and Minister of State.

A Wonderful Woman to Love

It is not always evident how to do it well, let alone how to do it best. Guiding someone you love along a path meandering between convalescence and demise, let alone preparing both of us for the latter. This is especially true between two soul mates, as the expectations are higher. 

You want to make the most of the remaining days by interacting, verbally or otherwise, as much as you can. But a patient has other preoccupations besides talking to you or even holding hands. Trying to keep your food down, for example. Nursing a coughing fit. Or taking a nap because are just too tired. Other people lay claim to the patient as well: the nurses come in twice a day, the doctor several times a week, the nurse coordinator twice a week, the hospices are hovering about from 9 to 8. In addition there are meals and prolonged naps. Waking hours have to be shared by occasional visitors, skype conversations and phone and nature calls. I am not begrudging anybody for wanting to have quality time with my wife. After all, they may be next-of-kin, dear friends or benevolent neighbors. They all have an understandable claim. Lara loves to see them, in measured doses. Then there are business matters to discuss, transactions to be performed, loose ends tied up. And we talk over the breakfast table, about topical issues. But alltogether there are precious few waking moments where, say, a husband and a wife, can cut out intimate time alone. (That is one of the reasons why we did away with the night nurses, since 24/7 became too oppressing.)

But how do you use the opportunities for quality time to mutual and maximum benefit?

Not so easy, if intuition is pretty much your only guide. I have no formal training.

I, for one, relive memories with relish. It helps me cope with the thick atmosphere hanging in the house, even though reminiscing rips my soul. By happenstance I started browsing among the hundreds of pictures in my PC, and became increasingly emotional. I was reminded that Lara is a lush and wonderful woman to love. I would jump up time and again and show Lara some exciting photo transporting us back to sunny places over several years. After a few times of this, Lara couldn't take it anymore. She is too much preoccupied with the hic et nunc and the immediate future, to be revisiting times past.  So that was not the right approach. 

Once, after a flurry of messages had come in from all parts of the world, including some unexpected ones, I made the point to Lara that she had amassed so many people who look up to her, or hold her dear, or both, that the accomplishment alone was enough to fill a life. She didn't want to hear of it, adding she would rather not exercise her obituary every day. So that was not the right approach either.

Quiet presence works. Holding hands works. Any form of tenderness. It is just verbal intercourse that is harder, connoting as it does a choice of material for conversation. You soon find out, that we have said to each other pretty much everything there is to say over twenty years of marriage. Every relevant fiber of human relations has been worked and exercised. 

So in the end you just go with the flow. I take my cue from Lara and pop in myself with anything that comes to mind. And I let the chips fall where they may.

What else can you do?

woensdag 30 mei 2012

Summertime

Wednesday 30 May

A quiet day on the whole, with a tad more energy and but few upheavals, following a sound night's sleep.

After checking with our homeopathic doctor, we upped the dilution on Lara's medication. It has been over a week now since her last transfusion. Last night a blood sample was taken. Her red blood cells are at 2.8, neutrophils stand at 0.27, her hemoglobin at 8.2. her WBC at 1.75 (all in the right direction and moving), but her platelets (the first to start sliding mid-January) stand at a measily 1. As soon as the latter start moving up, hope resurges.

We ate a combination of foods prepared by two Italian cooks we know (Andreina and Elisabetta). Lara managed to make quite a dent in them, as she had done for breakfast as well. For dinner she had bouillon with Chinese shrimp dumplings and ate them with gusto.

Brussels 21 degrees centigrade. Summer at last.

dinsdag 29 mei 2012

Epidauros 2007


2007

Its name similar to the city in the Peleponnese, Epidauros was founded in the 6th century BC. The Greeks could hardly have picked a better place: a lovely bay and a protected port with wonderful greens. Today called Cavtat, it sits on the Adriatic in Croatia. While we were on a long beach vacation there, our granddaughter Yasmin was born in Holland.

That night we went for dinner in the stout city of Dubrovnik, twenty minutes North. I offer a picture of Lara and me over aperitifs and amuse-bouches, celebrating.






Zen

Evening

Lara has been home for longer than a month (was it 24 April?). Truth be said: she is in better shape now than when se was first brought in. At the time, she looked awfully sick to the point where I caused precipitated travels by a number of people from faraway places (sometimes upsetting their travel plans). What else is there to do? I am the whistle blower and I don't know what I am talking about. A hazardous position. Then again, highly trained doctors didn't know how to be more precise in their predictions either. "Whatever needs to happen, do it now!" was their best advice.

Lara has been stable for a long period of time, despite good and bad days. What we all have to understand and accept is that Lara's health is extremely fickle. What looks like stable one minute, may rapidly take a turn for the worse, the next. (Just now her fever shot up, sending everybody into code orange.) Her immune defense system is totally down and her blood platelets are almost absent. This makes her super-susceptible to haemorraghes and pathogens of all kinds. Both may be lethal. The antibiotics, as I keep repeating, can only do so much without white blood cells, especially neutrophils, of which she has precious few. Should she develop another infection (pneumonia, intestinal), it could become very nasty very quickly. If the infection would turn into sceptic shock, the consequences might well be fatal. (She survived septicimia twice last year, but she started with a much better constitution at the time.)

Humans may well have a congenital tendency of extrapolating an upward curve they find in somebody gravely ill, They tend to think that stable is for ever until it turns to better. Deep-down we are optimists because that habitus corresponds to our survival. Survival is the most basic of human instincts; and with instincts you don't negotiate. Still we have to force ourselves from time to time to inject a bit of realism into our thinking. It corresponds to reason, residing in a much newer part of the brain. As we do that, it may tell us we should not take the status quo for granted.

If, on the other hand, we wish to do both, i.e. being a believer and a realist, then we should perhaps reinforce the mantra I hope many of you still exercise: healthy, healthy, healthy! Say the extra prayer, do your zen, light that candle. Hope for a miracle. You may still be proven right.

Downer

Afternoon

So then Willemot comes back with contradictory information she's been given. Home transfusions are theoretically feasible. In practice, there are problems. The main problem is who administers the blood products. The whole operation from the first bag to the last, takes up over five hours: one pochette of platelets, two pochettes of red blood cells. It has to be carried out by a nurse with enough experience, and in the presence of a doctor who can intervene in case of complications (shock, usually during the first fifteen minutes of each pochette). This means in effect that both would have to stay for the entire five hours. Six hours coming and going.

The key question thus becomes if we can find a nurse with the required profile and a doctor who at least once a week - probably during the evening hours - would be prepared to offer his or her services. My doctor would be prepared to do it but not too readily. She has a family. At any rate, she wouldn't do it without a capable nurse. Our own string of nurses (from an organization called Aremis) are proscribed from doing it.

I will look into possibilities. But the assignment is admittedly a tough one.

Button

Tuesday 29 May

"There's a button missing!"

I had found her a black dress this morning. The cotton garment opens with buttons all along the front and is therefore ideally suited for accomodating the central line near her right collar bone. It is also sleeveless, which keeps her cool in the heavy weather and hot temperatures gracing Brussels at the moment. Also, I found her a yellow belt to match her little yellow chnels.

After her usual toilettage, she sits up in bed against her giant pillow. But just before she closes her eyes to take a little nap, she looks down and sees that one of the little black buttons on her dress is missing. And sure enough, I am dispatched to collect the button jar and sewing kit, leaving it to the hospice to find a matching one and sew it on.

It is these samples of lucid behavior and self-awareness that tell me we have some ways to go with this lady.

Let there be no misunderstanding: Lara has not gone on a hunger strike. (She still eats and drinks, while trying really hard to keep her food down, and she is still taking nutrition supplements.) Nor is she renouncing medical treatment in general. (She is still getting her daily supply of antibiotics, for example). She has merely decided not to travel to the hospital for weekly blood transfusions anymore. (It takes too much out of her.) She would accept transfusions at home if they were possible, but we are told that they aren't. At the hematology day-clinic they find the whole process of a transfusion (platelets and red blood cells) too complicated (compatability testing, deblocking, rincing) and the risk of shock too high to let it happen outside of their control. Our doctor, Isabelle Willemot, checked with them this morning, and that was the answer.

Willemot took it up further with the chef de clinique and insisted. Turns out it is possible after all. I will be duly advised how to put the operation together logistically. Did Lara want to be transfused at home?

Yes.

maandag 28 mei 2012

Weak and Strong

Monday 28 May

Cough and nausea are the two manifestions of Lara's condition that require the most attention throughout the day, and sometimes the evening or night included. Coughing may bring on reflux and enhance queaziness. She has to carefully triangulate between those two and her  meals. Medication has to be taken in step. Motilium Instant and Gaviscan ( a kind of Maalox) beforehand, Carbobel (carbon absorbens and Methenamin) afterwards, and Litican intravenously twice a day. Coughing syrops come in two varieties and are taken according to the time of day: baume pulmonaire not more than three times a day (makes her lightly drowsy) and a lighter syrop (Thymo Septine) that soothes the throat.

After every meal (if she decides to eat at all), she struggles to keep her food down, knowing that losing it doesn't help her overall condition. Coughing rips through her chest and her whole body convulses; it wears her out. Once she slides into sleep, it stops.

Her appetite is declining overall, and when she makes an effort to eat, she often has stomach troubles, losing her food. "I wish I could still look forward to breakfast", she says, but she doesn't any longer, except the company. That said, she found this morning's cappuccino superlative - "like in the old days".

Her weight is getting less and less, and so is her energy level. Weakness is progressing. Everything wears her out, even a telephone call, or reading the Paris Match. She has to regain some oomph by taking a nap and by spacing and shortening the few visits she will commit to. Her weekly visits to the hospital for transfusions are not matched by a surge of energy. On the contrary, the day-long trips wear her out instead, and even the next days too. "What are we trying to achieve here?", she asks herself. She would rather spend those two days in the company of people dear to her, saying her good-byes and enjoying life to the extent there is still something left to enjoy.

Renouncing any further hospital visits was not a decision that came lightly. We discussed it between the two of us, and with doctor Willemot. Almost all friends and relatives agreed with the decision. We all understand its graveness. Lara's overall blood levels will decline, including hemaglobin, and as a consequence transport of oxygen will be impaired, resulting in even less energy. Weariness will rise, sleeping hours be prolonged. Extrapolate that and you find a precipitated demise. If that end result is inevitable anyway, why not make the most of the time you have left? We will discuss particulars with the doctor tomorrow.

What is lifting her spirits up can be a variety of things. I browsed through some old photos on my PC and dished some splendid ones out for her to see: vacations together, family gatherings, events, personalities. Some of them I sent around to to friends and relatives, and that again brought about a small avalanche of photoes from other people's archives. Some went fifteen years back and we really had to think hard together.

Surprise visits and tokens of friendship is another medium. Yesterday, for example, Darka Topali came by, having taken the train up especially from Luxembourg. She is a former colleague of Lara's from her days at the Center for Human Rights in Geneva. Lara didn't feel up to seeing her face to face. Darka left wishes and presents behind from her and two other collegues, who still feel very attached to Lara. Again, it shows she has more friends than she dared to believe. A strong asset.

Around tea-time today, my son Bouke and his wife, Merel, arrived from Breda with our granddaughter Madelief. Lara just loves her role as 'oma' and regrets she cannot fully play it out on her two granddaughters. We all observed the one year-old walk about the room and grab a hold of all the interesting things in a new environment.





zondag 27 mei 2012

Residence 2006

2006

While posted in Stockholm, for much of the time Lara lived in New York where she was a Political Director at UN Headquarters. We kept up a Skype relationship daily, but not infrequently she would hop over and stay the weekend. Like here, in the summer of 2006, during a party for friends.




Fuzz

Pentecost, late afternoon

After her chemotherapies last year, Lara's hair began to grow back over the rest of the summer and appeared at first in the form of soft stubbles, reminiscent of stuffed toy animals. Through October Lara would hide her hair under a cache-misere. By X-mass time she had turned into a Audrey Hepburn (see "Picture").

Stuffed animals, in French, are called peluches. The Dutch word pluis is related etymologically, but refers to anything soft and fuzzy, I suppose. Anyway, despite incipient indigation over lack of reverence, I started to call her 'Pluis' - or 'fuzz' - and the nickname stuck until it became a batch of honor to her. By September she habitually asked me to validate it, several times a day. ("Am I your Pluisje?") This afternoon I promised I would never use the term in relation to anybody else. Ever.

I know this may all sound corny, but I am not writing these words for cheap effect. They matter to Lara. In dire circumstances, small things, especially those with a sentimental attachment, help you stay connected to the here and now, to living reality. They allow you to anchor firmly instead of drifting away over uncharted waters. Habits, pet names, a breakfast routine, down to mundane things such as a favorite dress or dish, become a life insurance; you cling to it. They become fixed markers on a terminal course. As long as I have that, I am safe!

Risotto

Sunday 27 May, Pentecost

Last night marked the closing hours of the visit by Eli and Nick. They returned to New York this morning, through Barcelona. We hung out together from about five, giving Lara enough space for naps in between, while Elisabetta cooked us a risotto in the style of Northern Italy. Wonderful, with a Moroccan rose wine. Lara had some of it as well, sharing the table with the other three of us, but ultimately couldn't keep it down.

We talked and talked, remininiscing some of the time. At around ten in the evening we said our goodbyes. Like all the goodbyes we exchange these days, there is a finite air to it. We would like to believe there will be a sequel, but thoughts about what the odds would be, are instantly quashed under a thick reality check. Tears well up.

This morning Francoise Krill called up, one of Lara's good friends from her Geneva days. Francoise has sent a string of post cards to Lara, replete with encouraging words and sweet wishes. Coming from someone who's lost her own mother to leukemia, Lara can relate to them along a straight line. Both women cry on the phone as they say their farewells. At 7:00PM her brother Gordon talks to his sister through Skype. The two spend precious sibling time together, their two spouses only joining the fray at the tail end of the link time.

It is, of course, hard to bear for Lara in such a moment itself, saying 'adieu' to yet another friend or next of kin. It must feel to her like she's on a departing train and the platform is full of people wishing her well, and a safe arrival. Through the open window she tries to shake as many hands and blow as many kisses as she can. Then it hits her: the crowd is larger then she ever would have imagined during much of her life. She would never have had trust enough in herself to come to that assessment. When she feels how much accumulated love there is rising up from among the well-wishers, it grabs her by the throat every time she takes a look at them. Every time her eyes sweep the crowd, makes her feel rich and fortunate. It comforts her by enhancing a sense of not having lived her life in vain; of having meant something to so many people. Of having accomplished good deeds, enough to leave this earth with her chin up, her eyes on infinity, even though much too soon.

"Go to Vieste and have a good time!" Lara is quite adamant and repeats it. Nick and Eli have had an apartment in the Italian town for over five years now and we spent two summer vacations together, at least overlapping with them for a week. They will be there from 18 July to the beginning of August. I have my mind set on joining them for at least a while, staying in a hotel close to the beach where we normally hang out.

This is the first of any planning I have done for 'afterwards'. Lara, at this point, is having her own thoughts about what will be happening to her after she passes, but I had pretty much repressed any thought of what will happen to me once she will be gone. Thinking about it struck me as accepting the irreversible, as something disloyal bordering on betrayal. It felt like relinquishing something dear that I was not ready to renounce.

Planning for Vieste is breaking away from that, with Lara's full endorsement. In a way I find it uplifting not concentrating on the time between today and  her demise, but instead concentrating on what lies beyond; the time I will be a widower looking at the rest of my life without Lara. In Vieste I will stumble on many footsteps we left behind together in happier days and I will take pleasure in retracing them. It will be good to reminisce and eat through my grief there. At the same time there will be enough distraction to lift me up and out of it, and put me on a path towards a different future than I have ever wished for.

zaterdag 26 mei 2012

Willemot

Saturday 26 May, noon

How blessed are we to have such a great GP for a doctor. Isabelle Willemot comes up at 11:00AM, having parked her bicycle outside. She finds Lara's lungs better but her overall energy level lower. Reading is no longer an option; playing scrabble even less.

It is striking how easy we find it to talk with her about where Lara finds herself on her way to the end of her life.

Lara doesn't wish to die; it is not the end or destiny she has chosen for herself, at least not now. She never wanted to die at an age younger than her father was when he himself died 'much too young'. She has always had in mind to die at a ripe old age, a lady who has lived enough and is ready to depart. She wanted to come to that age together with me, envisaging a life full of adventure - with me.

"I can't believe I am discussing my own death", she says, adding that it feels like we are talking about somebody else's. "This is all so scary". It is the fact that you see yourself retracting from what you have been, she notes. It is worse than a nightmare, for from a nightmare you always wake up sooner or later. With death there is no second chance. You die, you really die.

I wish I would be more zen, more at peace. "I have no belief system in place". She wishes she were more sure in her conviction that she is making the right decision, and that it will be OK whatever she decides (like people recovering from a near-death experience; people who didn't want to come back). And when the end is near, it must be dignified and effortless. Yet, fading away is just as scary as an abrupt passing. She procrastinates, doesn't want to be rash or firm for the moment, feeling rightly she doesn't need to be. She feels constrained by the push and pull surrounding a choice of destiny. "I don't have to make a choice if I don't want to", she says, and wonders if, in the end, it makes any difference at all.

There are several switch moments on her final parcours that will help her make a decision. One is eating. The less she takes in, the more feeble she gets, the more sleepy she will become, and ultimately she won't have energy to wake up. She has no appetite, nor does she feel the urge to generate one artificially. Then there is Tuesday. She is scheduled to go to the hospital for transfusions. But will she actually go? Or will she want to go one last time?

We can talk about it together only for so long, a little bit at the time. This is too enormous to want to settle the matter in one fell swoop. Her brow draws into a sob and she wipes tears from her face. Pressure builds up behind my own eyes. Willemot is flushed as well.

Pasticcio

Saturday 26 May morning

"My dreams are not too bad, on the whole!" The quality of her sleep off-sets the downsides of waking up out of it. A first cough rips through her sides and hurts the muscles in her rib cage. At every subsequent cough she holds on to her left side with both hands. A Motilium Instant and a swig of Gavistan have to settle her stomach, but she soon refluxes anyway. The overall energy-level was allright by her own account, due to a long night's sleep.  We sit and talk to guide her through the opening hours of the day. Look at my skin, she says, it is dry everywhere. It is, but applying cream feels sticky and uncomfortable, especially with the warm weather expected over the Pentecost weekend. Igor is visiting in a big way.

It is nine fifteen and Souad comes in, followed by the nurse. They take her through the morning routine quick and efficient and with full regard of what Lara can take at this point. Half an hour later they sit her across from me at the table, wearing a sleek black dress (banana fiber) and a faint but familiar smile under a sad frown. I look in her eyes and no words are necessary to express the conflicting feelings that beset her. "I understand", I say to her. And I really do. That is often all a woman needs to hear. (Men want to hear 'they are right'.) Yoghurt and fruit await her along with a fresh cappuccino. Half way through the bowl, she asks that it be covered over and saved until later.

We have to find a way to get some more protein into her. Without it, the body will wither away much more quickly. Then again, if the end destination remains the same, why forcefeed a patient and gain a week on a lifetime, if that?

Last night Nick and I went out on a boys' night while Elisabetta stayed with her friend and cooked her pasta and eggplant. The boys went to see the  new film by Sasha Baron Cohen, "The Dictator"; one of those movies where the trailer is better than the full feature. What balanced the evening out for us was dinner at "Il Pasticcio", the best Italian restaurant in Brussels, run by Maurizio. He gave us a table in the courtyard, where we enjoyed the most amazing and copious meal, bien arrose and laced with profound conversation. We didn't get home until 11:30PM where Lara woke up immediately and wanted to know all the details.


vrijdag 25 mei 2012

Slippage

Friday 25 May

Round'about six last night, the weather had turned a little balmy and it felt like a rain storm was in the air. Our apartment has this large veranda, or covered terrace, in the back, where the atmosphere is quiet and green. Lara had walked, without oxygen, from the living room to her recliner on the veranda and was hooked up to the oxygen machine in the back. Eli and Nick joined us there for tapas and wine, and a spirited time was had by all.

Soon enough a blinding rain storm burst loose, refreshing the air. I fixed us all some dinner. Lara migrated back to her bed, where Elisabetta kept her company. Girl talk and just some quiet presence.

The next morning it became clear what price she had paid. It doesn't come as a surprise. Since about a week she has been loosing strength. the nurse has noticed it as well. Slippage. "I am so tired, Toine!" She looked it, too. Completely exhausted. She asked to be spoon-fed her breakfast, and told me to go slowly after the first bite. Shall I make you your cappu first, I asked? A faint nod, her face somehow in a sad expression.  As soon as the daily toilettage is over, she will probably sleep throughout the morning.

I will drive to Antwerp and pick up her new homeopathic medicines. Need to be there by noon. I hope nothing dramatic happens while I am on the road.

donderdag 24 mei 2012

Paris

Thursday 24 May

A routine day for the first half, including full breakfast (seated), and a visit by doctor Willemot. We discuss with her about prospects for the coming week. A big crystal ball. Nobody can tell with any certainty hows long this is going to go on for. Lara feels she's fading by the day physically, but still she seems to be drawing on hidden reserves deep inside of her. We have seen the same phenomenon last year when she showed us a medical miracle. Is a second one excluded? Many friends choose to believe in one.

Soft weather. I slip out to have lunch with Eli and Nick at Le Pain Quotidien, sitting in the shaded part of the court yard. Tartines et salades. Meanwhile Lara's friend Nina visits with her, having come up by train from Paris.

The only painful spot on Lara's body is her left side. Due to her coughing fits, the intercostal muscles are lightly ripped in her lower rib cage, and they hurt pretty badly every time she coughs. Three different kinds of cough syrops have to keep it in check. Arnicagel is the only remedy against the muscle pain. We remember it well from a similar ailment, on both sides, last year.

Since a few days her homeopathic medicine, Staphysagria, has been upped for a second time, to the level of XMK (10,000). The next steps would be LMK and CMK. Dr Schroyens will direct accordingly. Also I feed her concentrated drops of vitamin-D. The drops are so thick, that when you put them in water they move like heavy cream. But what she really needs is protein; she takes in too little of it. When I remind her, she shrugs, as if to say "for what?".

Lara sleeps and rests after Nina has left. Eli and Nick will drop by around six, and prepare a little dinner. They promise they won't stay long, for their friend is likely to conk out early tonight.

I flip through the dozens of pictures on my iPhone, taken in the second half of last year. The two of us out on a walk in the park, on vacation in Normandy. Days full of promise they were, of careless optimism, plucking the day. We had done battle, and won! Lara, over the course of the months, regained her vitality and her beauty. She looked attractive, even lush, and her confidence rose again. Now, five months later, she really doesn't want to be seen by anybody anymore, and has become self-conscious. Look at me, she said. I truly feel for her. Poor kid.

woensdag 23 mei 2012

New York

Wednesday 23 May

Elisabetta and Nick arrived safely (be it two hours late) in Brussels, and worked their way over to our flat around 6:30PM. A jolly good time was had by all. A little after nine, Lara began to fall apart and could barely keep her eyes open. Arrangements were made for tomorrow's visit. A good night's sleep will probably do all of us good.

dinsdag 22 mei 2012

Chanels

Tuesday 22 May

At two minutes before ten o'clock, Lara was declining in her hospital bed, connected to fluids and oxygen. Turned out that the one central line available for her transfusions was blocked up and needed to be debouche with a shot of Heparin. A doctor has to sign off on the use of it and that slows us down. It will be a while before the blood sample is analysed allowing for an order of the sppropriate blood products, since compatability has to be secured. That will set us back a bit. It is going to be a long day.

The blood values are not bad, given that in her case the difference between good and bad is relative. Haemoglobin stands at 8.0 (up from 7.6), but should be at 12.0 plus. With the two bags she is about to receive, it will rise by two points to 10.0. The WBC stand at 1.48, up from 1.15 last week. The neutrophils are up from 0.21 to 0.36, which is good. The platelets went down from 2 to 1 per MicroL. Not a radiant report card, but it could have been a lot worse.

Lara did not have a sound night's sleep and she woke up tired. I got up spontaneously at 4:30AM and caught her in the middle of a confused nightmare. How did you know to come find me, she wanted to know, I thought I had lost you. I always catch my lady when in distress, I reassured her. I should not have doubted you, she replied.

As I look at her now, across the room, her face is pale and drawn. Still she has oomph enough to have me read her the headlines from the Herald Trib and comment on them. What a girl. As far as her appearance is concerned, she has left little to chance: white designer stretch pants, a white long-sleeved cotton top with glitters, pink turban and glossy yellow Chanel flats (known at home as 'my little chnels'). We are both rejoicing in the prospect of having Elisabetta and Nick flying in from New York tomorrow.

At 4:30PM the last drops of red blood cells have dripped into her veins, and the obligatory rinse a little later. Then we wait for the ambulance. At 6:00 we are home again, where I rehydrate the patient. She lies back and falls asleep rightaway.

maandag 21 mei 2012

Pizazz

Monday 21 May

Another day without much pizazz. She's wearing a cotton yellow dress - one of my favorites- and shiny yellow flatheeled shoes - in as much as she will be doing a tour de table. Besides her cappuccino she managed less than half her bowl of fruits and yoghurt, saving the rest for lunch. Most of the afternoon she sleeps. It is not hard to picture, at this point, what she will look like once she has expired: straight on her back, her arms alongside her body, feet paired, her head slightly raised. Her features are taut, eyes deep.

Just contemplating her makes me extremely sad. Her breast is slowly rising each time she breathes. Sometimes her rhythm is so slow, I zoom in anxiously to make sure there is a next one. My great fear is that I will somehow miss out on the moment when.

We had a long and reassuring conversation with our general practitioner this morning about how a terminal patient might still call the shots. Back and forth we expressed what it is we need and want from our side, so that there be no misunderstanding. Lara emphasized self-determination, choice and serenity; and above all no asphyxiation. The doctor, for her part, explained what the rules are she feels bound by, and the limits of her actions. For this is the point we are at. Lara and I discussed about it a deux, after the doctor left. A teary talk. Lara is mostly worried about me and how I will be able to cope. She is less worried about her own passing, and how all of her last hours will ultimately transpire. That's my Lara: more concerned about others than about herself.

We tried a little scrabble. I unfolded our travel kit and we started what is most definitely going to be our last game ever together. Full faculties against a moribund; I should be able to win this one. Into the second move she needed to take a break and close her eyes waiting for the night nurse to drop by. The tremor in her right leg rattles the gameboard.

Tomorrow an early rise. At seven the nurse arrives for the morning ritual to have us ready to go on the ambulance around 9:30AM. Looking forward to a whole day at the hospital. The very thought is exhausting to both of us. Metal fatigue is setting in...

zondag 20 mei 2012

Captain

Sunday 20 May

Although admittedly low on energy, Lara made six rounds touring the dining room table after her morning toilettage. She is, my friends, more and more emaciated, and needs rather prolonged naps in between activities. Now two days shy of a full month back at home, her question (and mine) is how long her sick-bed is going to go on for. We are looking at mental exhaustion on her part, and a dwindling supply of hope. Resignation is beginning to set in and preparation for an untimely end. How will it come, she wonders, and will it be destiny making the call, or doctors - or Lara herself? And where does that leave her, as master of her fate and captain of her soul? The concomitant loss of control is deeply worrying to her, to put it mildly. We discuss about it a lot.

We decided we want to talk further about this with our GP tomorrow.

The poem she wants to see used on her own death annoucement is nearing completion, but in a way she is reluctant to pursue it to the end, as it would eliminate one more impediment to just putting her head down for ever. It feels to her as if, with the poem finished, there would be nothing left for her but dying. Partly, also, the poem is bringing her awfully close to where she rather would not be. It is like the Isfahan poem in a different variation. Heavy on her heart, but determined nevertheless. Sounds like anybody we know and love?


Limp

Saturday 19 May late evening

Lara feels week and limp this afternoon and evening and a small fever is trying to get ahead of Novalgine and Dafalgan. The whole afternoon she rests on top of the sheets, fully clad, her eyes closed, very deep asleep at times. She doesn't look good, my friends. Lara herself blames it on the bad night's sleep she's had, but there is more afoot then that, I'm afraid.

I secured an aerosol breathing apparatus, but I am reticent putting it together and connecting ot to her face. She can't take it right now. Also, I want to prop her up and get ready for a skype conversation with teenage friend Tia Higano, out of Seattle, at 7:00PM. No appetite.

She did have a long talk with Tia, a director at the Hutchinson's Center for Cancer Research ("the Hutch") in Seattle. The two had last met when they were about 14 years of age. One and a half hour was scarcely enough to fill the huge gap. Lara had to muster every last bit of energy and threw in the towel a little after nine. "I hope you don't mind", she said to her friend. The two will talk again.

zaterdag 19 mei 2012

Catacombs

Saturday 19 May

Last night, after having eggplant-parmesan for dinner, we watched "The Bourne Identity" in the TV-room, a film we hadn't seen since its release, ten years ago. Lara held up very well. In the middle of the night, though, she went through an extended fit of coughing (I guess for half an hour) and it didn't sound too good. Cough syrop provided some relief. She was more at ease towards the morning, but after waking up, it started to come back. We thought it best for the doctor to have a look at the rumble in her chest, and she will pass by around noon. Meanwhile the nurse and the hospice are busy washing and dressing Lara: black slacks, red top with long sleeves, Ferragamo's on standby. Looking forward to her cappuccino, muesli, yoghurt and fruit.

Complications like this (if that is what we are looking at) are to be expected with patients who have no defense immune system in place to speak of. As a broad-spectrum antibiotic (Gram-negatives), there is only so much the Meronem can do to suppress infections. It needs leukocytes, and in particular neutrophils. Lara was not sporting many of them when last counted (0.21 per microL).

We had a logistical hiccup. The local pharmacy called me yesterday saying they could not guarantee a new supply of Meronem until Monday noon, sorry. We had ordered the supply last Monday so normally there should have been no problem securing it on time. That left us without any antibiotics for Sunday and Monday morning, six vials of 1 mg each. Impossible to find a pharmacy open that would have them in stock; it is a rather exceptional item.

So what should I do, I asked rhe pharmacist? Go to the pharmacy of Saint Luc between 11:00 adn 12:00AM; they will give it to you. Never been there. At the minus three level, in the catacombs of the building, there is a miniscule counter. So I arrive and they ask for a prescription, which I don't have. My own pharmacist  has it. So what to do? The hospital pharmacist stood her ground and suggested one unworkable solution after another; it was clearly not her problem. Oh, and she would close shop in half an hour! But my wife needs them without fail. Tell me about it, she answers.

I ignored all of her unfeasible itineraries and took the elevator from minus three to plus five, the hematology ward. There I run into one of Lara's treating physicians. He is more than happy to write me an ordonnance on the spot. Five minutes later I walk out of the hospital, vials in hand.

Doctor Willemot meanwhile detected a rumble she hadn't heard before and asked if it was getting better or worse. Better. Exercise your breathing with an aerosol, she recommended. So that will be my nexy assignment: finding a pharmacien de garde who has an aerosol for lung patients in stock!

Never an idle moment in this house.

vrijdag 18 mei 2012

Rapids

Friday 18 May

My daugther came over with her husband, Kai, and our grand-daughter Yasmin (soon 5). Yasmin found the whole set-up in our livingroom just awesome: Grandma hooked up to all these tubes and getting to sleep in the living room! That called for a string of artifacts like templet-colored drawings of various animals, such as an elephant, a giraffe, a baby tiger and a rabbit, in psychedelic incarnations.

Kai helped me fix a favorite shot I took of Lara in December last, at Rob's Gourmet Market. we had justed bought two giant (and identical) X-mass baskets (we put them together ourselves); one for the hematology section and one for the ICU. As we sat down to have a nice cappuccino upstairs in the restaurant. Lara looked radiant, satisfied and Christmassy. The day before she had gotten a twenty euro haircut (the first in a year and there wasn't that much to cut yet, actually) at Jacques Dessanges, enhancing the Audry Hepburn look she had unwillingly begun to sport in the months prior. I was totally smitten again with the way she looked. I just had to take that photo.

By the end of the afternoon I had sent it around to a legion of relatives, friends and acquaintances in a format that was ready to print and frame.

Fact is that, today, she looks like a mere shadow of what the photo portrays her as. At the time, we felt - perhaps naively - that after an annus horribilis we would deservedly enter an era of relative calm; we would just go with the flow, without having to do much rowing. We didn't hear the rapids churning around the bend, until we were right in the middle of them.

Keep that photo in your mind's eye when you think back of Lara. It represents a good median image between when she was in the prime of her life and where she is right now. Apart from that: this is the way she would like people to remember her.

Right now she is developing a cough that I don't trust. It may amount to a new infection, or it may just be the vestiges of the old one she is getting rid of. I don't know. And that is the point. I am not a doctor or even a nurse with a long clinical experience (never mind formal training), so I allow my layman's judgment to inform my level of concern or anxiety in relation to any aspect of Lara's health. I connect the dots without looking at the numbers. What else can I do? In addition, even if, per chance, I would stumble on the right diagnosis, I still couldn't do anything beyond that. Which really sucks.

Time to conjure up some dinner for my sweet love, who is reclining in her bed.

donderdag 17 mei 2012

Asuncion

Thursday 17 May

Yesterday was a "down day" in Lara's vocabulary. She didn't feel all that great, spiritually mostly, despite visits by Helene and Andreina. Physical discomfort led to loss of appetite. She knows she has to eat, for she's already skin over bones. Scales are taboo. We don't know what she weighs. It would be too depressing, she says. I wonder, she adds, why I keep putting my hope in all these dietary supplements and homeopathic stuff. I have cancer, for Pete's sake!

After a good night (I check on her during the night, sleeping next to her bed, on the couch) the morning came with bruleur and ballonnement. Good for a swig of Gaviscon and a tablet of Duspatalin. Breakfast has to wait, but her cappuccino goes down in a jif. Wonderful, she says, with a gratified sigh.

Fatima, the garde-malade, comes in at 9:00AM and Benjamin, the nurse at 10:00. She sends me out to get proper clothes for the day, the kind of mission I perform contre-coeur, for I usually end up bringing her the wrong stuff, followed by repeated refoulement. To my surprise I get it right the first time. During her bain de bouche I notice she is shivering (or is it a tremor?). I don't know why, says Lara, I have no fever.

Her appetite is now down for the third day running. Even the eggplant-parmesan dish Andreina made for her - one of her all-time favorites - fails to rouse her interest. Heart-burn and gas don't do much to reverse the trend. Do you think my organs are beginning to shut down, she asks? How should I know, I say airily. The throught terrifies me. I leave a message on Dr Schroyens's answering machine (he is gone for the long weekend, but will play back his messages and respond as necessary).

Mysteries. The only thing you can do is wait and see.

Sit with me, she says, patting the mattress beside her. That I know how to do.

woensdag 16 mei 2012

Busy Body

Wednesday 16 May

A lot of people were milling about in the apartment this morning, at one point all of them at the same time: Ilona, our domestic help, Souad, the garde-malade, Aude, the nurse, Isabelle, the general practitioner, Maggy, the lady from Interface home care, two big electricians in the kitchen fixing something - and yours truly. That is all a bit overpowering for Lara, who - after eating lunch - had to go take a nap. And did.

She is generally doing OK in appearance, but with a diminished infrastructure. We will have to see where this goes. The doctors, too, take her evolution one day at the time.

dinsdag 15 mei 2012

Stamina

Tuesday 15 May

Time and again I marvel at the resilience of your friend.

Take today on our trip to the hospital and back. At ten to seven in the morning, the nurse rings the doorbell. She comes for her morning routine, washing Lara, upping her meds as necessary, helping Lara to put her clothes on, and leaves after 45 minutes. By that time I have gotten up, showered and shaved and prepared breakfast. We sit down and take our time.

At nine fifteen, the ambulanciers arrive to lift Lara from her bed into a chair, unhook her from the oxygen concentrator, hook her up to an oxygen cylinder, take her fluids from the Baxter and get her in an elevator down. On the groundfloor they hoist her up out of the chair and put her onto a strectcher, then wheel her outside to a waiting ambulance, strap her in for the ride and with nauseating speed wind our way through morning traffic, sirens ablaze.

Half an hour later they lift her off the stretcher and put her in the waiting hospital bed. Then immediately the nurse comes in an takes a blood sample. Followed by transfusions, a conversation with the doctor (not very uplifting), until it is five thirty and the last drop of red blood cells have disappeared inside of her. Meanwhile, I have eaten her lunch for she is not appetized.

Then the ambulanciers come, lift her manually off the bed onto the stretcher, through rush-hour traffic (making both of us puky), onto the chair and back onto her bed by six thirty.

By then she is truly exhausted, but she has taken all the onslaught with an equanimity I find truly impressive. I would have gotten either very angry or very despondent. Her absorption capacity is seemingly limitless. Still she will need all of tomorrow to recupe.

They strip away everything that is a core value, she says. Intimacy, privacy, independence. So you eke out something basic that still matters to you. Like taking care of your bodily functions on your own. That is your last resort. The absolute no touch area. For as long as you can hold out.

Next appointment scheduled for Tuesday next week - if she makes it. The thought of having to do this three times a week is disheartening to her. It takes effectively six days out of her life, diminishing her quality of life (such as it is) commensurately. And for what, she exclaims? True enough. Once a week is my max, she says.

Transfusion

Tuesday 15 May

Some quick results from the blood sample taken this morning, as per our discussion with the haematologist.

Bad news are the blood platelets. They have come down from end April (19) to 9, then 4 and now 2 platelets per MicroL. They should be at 150! This makes Lara all the more vulnerable to haemorrhages of any part of her body including the brain, down to a simple nose bleed. She received a batch of platelets but they die inside the body within two days, so not much solace they give.

The WBC (remember, white blood cells) stand at 1.15 per MicroL whereas they should be at 4.00. A a sharply upward push (and much less a veritable surge) in the WBC would be a bad sign for leukemia patients, because it indicates an evolution of bad cells (blasts). What I hadn 't realized is that the number given for WBC includes the blasts and does not therefore refer exclusively to healthy cells! The doctor was happy to see that the WBC count had not moved up but remained stable. Blasts remain at 10 percent like where they were on 26 April. So at least they haven't shot up.

There were to pieces of good news, corresponding to two other indicators. The first is the neutrophils which now stand at 0.24/MicroL, shy of the minimum effective level of 0.5, but nevertheless providing a decent protection against infection. The second is hemoglobin which is now at 7.8, two full points up compared to last week. Along with it, the red blood cell count had risen from 2.04 to 2.64.

Stockholm

People may be blind-sided by emotions very easily. Emotions, to a dying person, remain manageable up to a point. You allow them into your life either because you cannot contain them, or because giving into them provides a measure of solace. A good cry relieves. As a patient (or next of kin) you can mostly see where emotions are coming from, which makes it easier to ward them off if they are not opportune or welcome; or helpful. But sometimes they come from an unexpected angle and bore right into you before you realize, while at the same time bringing forth a host of other emotions by association.

It happened to Lara this morning. We had made good time in the ambulance to the hospital: half an hour from bed to bed. As early as 10:00 AM, a blood sample was taken, auguring well, we hoped, for the rest of the day. As soon as the nurse left, I broke out a green envelop addressed to us both. It had come in the mail that very morning. Elisabeth and Mats Hellstrom had sent us a wonderful book of poems as a soothing gift. The poems were by Tomas Transtromer, who won the Nobel Prize a few months ago. Robert Hass edited translations into English (as it happens, Lara knows Hass personally and has worked with him in California).

Lara was touched by the gift. But what hit her even more - and unexpectedly - was the postcard Elisabeth had inserted in the book, offering a splendiferous aerial view of Stockholm, Gamla Stan. At that very moment she realised she would never see Stockholm again, the city she had never thought she would fall in love with, but did - head over heels, in fact. And not only Stockholm. A host of other places she would never have a chance to visit any more. Vienna for example, and Paris, and Lake Tahoe. And places that were still on her list; like Antarctica.

All of a sudden it occurred to her that it was over; that she could only hope to see those places vicariously, through my eyes, when I would choose to visit them. The sadness of the idea, in all it's complexity, hit her in the same split second she saw the photo of Stockholm harbour. And she broke into tears. I had to promise to spread my wings to faraway places and let her come for the ride.

And now I sit in an uneasy chair at the foot end of an anonymous hospital bed, looking at Lara reclining into a short nap. Her pink turban is on slightly askew, her patent leather Ferragamos neatly tucked against the foot board, her appearance brightened by a purple top and a matching multi-colored scarf. Her frailty tells me that she is right. It is over for her. No more Stockholm; no more anywhere. Her closing days confined to a living room in Brussels.

Home.

maandag 14 mei 2012

Sub-terminal

Monday 14 May

Your friend slept soundly for a whole night. Still, she doesn't feel great. Nausea and weakness battle with her desire to discuss the morning's headlines, which include election results in Germany and the "egregious mistake" of 2 billion USD that JP Morgan made. "Oops", Lara commented. Cappuccino takes the edge off, but she doesn't feel great.

When I found her asleep at 7:00AM - and I force myself to own up to it - my impression was one of a sub-terminal patient. Which is what she is. Her face colorless, her skin taut, her lips thin and drawn inward, baring her teeth. Still her breathing was even and deep, fed by 6 liters of oxygen from the machine (concentration at 92%).

"I am dying", she admitted over breakfast, but I am not gone just yet. I want more quality time, she insisted. She will have it. Admittedly, I hover about a lot, but I am not one to suffer other people's sickness bravely. You whisk in and out, says Lara. Which is true. I escape into taking care of her. Then again, we do talk to each other, but find that there is not an awful lot left to say after a long life together and a long illness. We have to draw up a list of items, maybe. You don't want to discover you forgot to ask her about something important.

I have to finish my poem first, said Lara.

Amen to that.

As from today we will skip having a nightly garde-malade, so it will be just Lara and I in the house with a list of emergency numbers to call in case of sinistres as the French
say - in case something goes awry. The ladies will keep coming from 9:00AM to 8:00PM.


Tomorrow will be a busy day. Early rise at 7:00AM to receive the nurse, then breakfast and a 9:30 pick-up by the ambulance. Probably not back from the hospital before 6:30 or 7:00PM.

Around 6:00 today Connie called and wanted to know how I was and then Lara. I passed her through to Lara and Ed joined. They were sorry they couldn't travel all the way over to Brussels to visit her one last time. They both have serious physical impediments.

Ed, as a parting shot, at the end of the phone call said something intriguing: "We will see you in time." An evocative greeting when you think about it.

Bad Day

Sunday 13 May

Yesterday was a day full of energy. Today the opposite. So she took it easy. We expected friends to come over by 5:00PM and Lara took pains of doing her face up and wearking her, yes, patent leather Ferragamos witgh a black dress.

Around 6:15PM she developed a shivering fever, which within half an hour shot up to 38.4, then to 38.7C. We called up the duty nurse (a familiar face), who was there within ten minutes. She in turn called our GP, Willemot, even though she was not.on call for the weekend. Together they decided to administer Novalgine to bring the fever down and Litican against nausea.

Gradually the fever went down and she started to feel better, still unsure of what caused it all. Around 9:00PM she was even ready to partake of the homecooked Italian meal prepared by friends on the spot. 

Conversation picked up again and everybody left around 10:00PM. As I look over to her, she is soundly in sleep.

zaterdag 12 mei 2012

Salmon

Saturday 12 May

During the time I was at the gym, around midday, Lara felt energetic enough to take a little promenade circling the dining room table four times, Baxter and all, no oxygen. She wasn't even winded by the time she was stretched out again. After lunch, cooked by Souad, one of the gardes-malades, she did another four rounds.

Lara hates the idea she has no clue what goes on in the world, so I set her up with her laptop in her, eh, lap. She is watching CNN International as I write this.

I will go out and buy a cordless baby-phone so Lara can wake-up the lady who stays overnight directly. Last night Lara got up three times but was unable to get my attention, deep asleep. Consequently, I was not waking up the night-lady as I normally would. The baby-phone will shorten the line of communication.

"Salmon Fishing in the Yemen" was announced as a 'feel-good' movie, and it was: good writing, good direction, a bit trite sometimes but palatable, not least of all by the acting of Kristin Scott Thomas ("The English Patient"), Emily Blunt and Ewan McGregor. Not normally a film I would be eager to see, but it was just what the doctor ordered and at the right moment: I was softly simmering and stewing at home and needed to break out for a few hours.

I was sitting in the theater, phone in hand, waiting for any vibrations, but none came. Lara was quietly plodding away at her poetry, sitting up in bed at home. I was back again a little after nine. In order to compensate for my absence I made her miso soup with dumplings while I told her all about the movies. We tried to guess how many movies we had actually seen together over the past twenty years. Probably a little under one a week on average, adding up to close to some seven hundred films, we figured.

vrijdag 11 mei 2012

GI Jane

Friday 11 May

She sits across from me at the dining table, literally two steps away from her pillow. Her skull is a patchwork of deep black stubbles. The scabs on her wounds (remember, she fell to the ground a week ago and hurt herself badly) have disappeared and restored an impression of equilibrium to her face.

Her regard is that of a tired person. It happens, she reassures me. I'll be okay. Her 'don't worry' response is so automated, however, that I don't put any trust in it. She is the master mother-hen who is innately protective of all other creatures under her wings, including me. I am not fooled. She needs to perk up before this evening is out.

We are eating one of her famous soups (barley-mushroom with fresh tomato couli) that she made before she turned into the hospital end March. The thought occurred to us, while spooning away at the hot thick broth, that I might soon be eating something she had prepared before passing away. Now, how weird would that be?

On the spot, we decide to watch a movie on TV in our den, which entails a short migration from the living room. I will pick out a nice one. By the time I get back to her bedside, she is irretrievably asleep.

So was Igor. Lara has had a tremor in her right foot since a few days, which - typically Lara - she would refer to as Igor. "Down Igor!" We have no idea where the tremor comes from, but it was a familiar feature in her MS days. Under the circumstances she is not really worried about it. Anyway, Igor was down, this evening.

Distress

Euthanasia - or at least active euthanasia - is still a complicated affair in many European countries. So is assisted suicide. Either it carries heavy penalties for those responsible (not including the dead person), or there are a string of conditions that have to be rigorously met in order to avoid legal problems. In some countries (Switzerland), citizens and residents can join an association (Exit, Dignitas) ready to provide services to the terminally ill. There are fine lines here. But forget alarmist stories about buss loads of terminally ill being trucked in from Germany and beyond, of people who won't live to see the next dawn as soon as they have crossed the border.

Passive euthanasia is a different matter. Doctors at Lara's bedside referred to it as 'the distress protocol'. They up the level of morphine and other drugs until the patient loses consciousness, drifts into sleep and never wakes up. It is available to the terminally ill in a crisis situation (my wording). Clearly, Lara is in too good a shape to come even close to the protocol. Point is, however, her condition can change dramatically very quickly. This may be due to an acute infection (remember no immune defense system in place, just antibiotics) or she may start to bleed internally (remember, low platelets). In a way she now represents an alkaline battery. She will keep on going at a certain performance level, which then sharply drops off.

Patients may, of course, provoke their own crisis situation. They can refuse to be taken to the hospital for blood transfusions. Antibiotics may be declined. More dramatically, a patient can abstain from food or drink. Spiritually, patients may simply give up and refuse to fight off impossible odds.  

Lara may look terminal, but she hasn't decided to die. She is just getting ready for when the moment is upon her. Taking her time. Ideally, she would like to die at a moment of her own choosing, with a few selected people standing around her bed, a glass of champagne in their hands, toasting her, soft lighting, a little music, one last wave - and onwards. She knows it is probably not going to play out that way.

My tears are accumulating behind my eyes, I can feel them. They are just waiting to be released. This, dear friends, is not easy - not for the patient, but not for the next of kin either. Losing a spouse is one thing; losing a soul mate quite another.

donderdag 10 mei 2012

Vieste

Thursday 10 May

"What I would give to be in Vieste with you right now, and have a meal with Antonietta."  We agreed strongly.

Vieste is a wondrous little town, a fisherman's village since long, flooded with Italian tourists in the season, sitting on the very tip of the peninsula that sticks out into the Adriatic Sea from the back of Italy's boot. We have spent two summer vacations there with Elisabetta and Nick, our friends from New York, the last time in 2010. I have saved pictures of Lara, bronzed and lush in stark summer dresses. We had many meals there in a string of different restaurants, our favorite being La Tavernetta, with tons of exotic fresh sea fruit prepared with uncanny flavors.

Lara was musing. Perhaps, she said, instead of going in for the second series of chemotherapy, we should have just said "Forget it" and taken a plane to Vieste one last time. It didn't happen, of course. These are afterthoughts, but they are, oh, so pleasant to immerse oneself in. We reminisce about other places we have been together, memorable trips, seminal events we have witnessed first-hand. It is a form of escapism, I reckon, but benign in its effect.

There are regrets, too. We never made it to Antarctica, even though we wandered into a travel agency to check out the offers, less than two months ago. We would have loved to walk up and down Fifth Avenue one more time, with the Sex in the City Girls (the rest of them all live on Manhattan).

I never took you to Mexico City, she lamented. Indeed, we never got around to doing so in all of twenty years (although she went by herself once). There lie footsteps of hers that I have never retraced, whereas she has pretty much traced all of mine. Never postpone, we now know. Grab the moment. Pluck the day.

I promised that in our next lives I would start looking for her earlier and that I would find her sooner. We would somehow find time to cram more music, ballet and theater in our evenings, even though we have done our fair share even in this life. And we promised to be less combative within our marriage and to save a good fight for something that would be really really worth it. Most of them in this life we can't even remember the reasons for. Instead to be mutually supportive at all times.

In other words, we are in closure mode, but we are not giving up. We just wish to be done when the end is inevitable.

I though that my trip to the funeral parlor the other day (See "Parlor") was pretty heavy. What Lara is doing now is even heavier. Before I went ahead, I told her this was going to be tough and she swallowed a sob in acknowledgement. I gave her a design with a text of her own death announcement. As I write this, she is reworking it to her own preference. Just imagine doing that! (My own dad did it, by the way.) We talked about it over dinner just now. How resilient this woman.

She will never stop to impress me.

Even when she is no longer there.


woensdag 9 mei 2012

Elevator

Wednesday 9 May, evening

A long and grinding day. It took a while after our arrival at the hospital before a blood sample was taken and sent to the lab. And another hour went by before the results were carried in by a doctor. Not surprisingly, all her major blood values were dramatically off the mark.

Some figures. Red blood cells at 2.04 (should be at 4.00 minimum). Haemoglobin at 5.8 (should be at 12.0). WBC at 0.84 (should be at 4.00 minimum). Neutrophils at 0.29 (should be at 1.60 or at least at 0.5). Her platelets should be at 150, but instead stood at 4, an historic low!

On 26 April the lab did a microscopic count of the bad cells, and they stood at 10 percent. The next time she comes in (next Tuesday), they will do one again to see where we are headed. But, dear friends, the prospects are bleak.

Lara is taking her dietary supplements prescribed by Dr Tcachor and her homeopatic medication prescribed by Dr Schroyens (as off now at a strong dose). But in addition to those a small miracle is needed, really.

The nurse cleaned up Lara's central line as well she could but the perfusion was slow, taking up to one hour and forty-five minutes per blag of blood. Plus a bag of platelets. Actually, replacement of her central line is long overdue, but doctors don't risk it because of her low platelets count; she may bleed too much.

Long hours. I spelled out the news paper, bought an history magazine and read more about Syria than I ever intended to know.

Finally, at around 6:15PM, the ambulanciers came by to pick us up again. The driver wrestled through rush hour traffic, exascerbated by a driving rain storm. We made it home, holding up a pile of traffic in from of our apartment building. To make matters worse, the one operable elevator was blocked at the 9th floor by Federal Express, and the ambulance people (one of them the same gorgeous woman), had to carry Lara up over the staircase in a medico chair. She was slumped on her bed at 7:45PM. Zonked. I will have to wake her for a little supper, for eaten she has hardly all day.

Shoes

Wednesday 9 May

"I have got the wrong shoes on!"

Now, let us get the scene right. It is 9:45AM and Lara is in a hospital bed at Saint Luke's, located in a small examination room in the hematology day clinic. I am sitting next to her in an uncomfortable chair that is going to be my dwelling place for the next nine hours! Before leaving the house, Lara has done her eye lashes and her beauty mark, clipped on a pair of pearl earrings (did we buy them in Hawaii?) and put on her pink turban. We have just braved the morning traffic together riding in an ambulance with full acoustics. She is hooked up to 4 liters of oxygen fed to her from a nozzle in the wall and we are waiting for a nurse, a paramedic or a doctor. She is wearing a new black dress (made of bamboo fiber), which we bought together at "Les Ateliers de la Maille" at the bottom of Louise, and a turquoise twin top, which somehow matches her headgear. Her central line infuses a mixture of morphine and tranquilizer.

Then she looks down at her feet and to her horror discovers she is wearing the wrong Ferragamo's! Now, a few days before she had asked me to dish out her Ferragamo's from her shoe closet. What you have to appreciate, dear readers, is that I was quite proud to grasp that 'Ferragamo' referred to shoes and not to the movie industry or an expensive restaurant in New York's meat district. As instructed,  I zoomed in on flats with a gold clasp and found them immediately, feeling quite good about myself. I didn't remember - as she would we remind me later after having been found out - that she owns two pairs of F.'s, one in black patent leather, the other in navy blue. So, this morning, to her utter dismay, she found out she was clad - imagine - in a black dress and, yes, navy blue shoes! Horreur!

So I quickly offered to take them off and put them out of sight. She readily agreed, before anyone else came into the room, worrying that the ambulanciers hadn't noticed, one of them being a beautiful woman.


dinsdag 8 mei 2012

Flypaper

Tuesday 8 May

"Can you please change the channel?"

Last night we had Lara walk over to our den and hooked her up to the smaller oxygen machine, the Baxter at her side. As we sat down on the couch together, the TV was showing Grey's Anatomy; but a hospital series was the last thing Lara cared to watch at this point.

We had some supper and picked a movie, a comedy: two gangs robbing the same bank at the same time (Flypaper, with Patrick Dempsey and Ashley Judd, one of my favorite faces); quite funny actually. Between being tired and the morphine, Lara repeatedly asked me if I was getting it all. She wasn't, but enjoyed the moments she caught it.

Breakfast and lunch at the table today and a visit by Liza Kroger in between the two. She is a friend of other friends, whom Lara got to meet in New York in 2005. She had come in Frankfurt by car and stayed overnight at the Warwick, next door. Lara was happy to exchange stories and news.

At 11:00AM, to our surprise two impressive ambulanciers showed at our front door, ready to take Lara to Saint Luc. It turns out someone had gotten the date wrong, since as far as we were aware, Lara was due on Wednesday 9 May. I checked whether an arrival time of 11:30AM was still OK for the hematology clinic, and sure enough, it was not. Ultimo 10:00AM. By that time it was after 4:00PM and offices and call centres were rapidly closing. Still we managed after frustrating phone calls to arrange for an ambulance at 9:30AM tormorrow morning.  This may not seem much of a story, and it isn't. But what it does perhaps give you a taste of, is the string of minutiae that saps your energy during any given day.

Similarly, Lara was determined to wear a particular outfit during her trip to the hospital, and wouldn't budge. For 45 minutes I had to shuttle back and forth between her bedside and various wardrobes to find what she wanted. It is the kind of thing, dear female readers, that drives men nuts, for they don't see the point. I am just one of them.

Then the kine came by around 2:30PM, having set up an appointment through me. He wanted to work on Lara's lungs. The first (and last) time he was here, she had allowed him, under duress, to hook her up to a breathing machine, but even then stipulated she didn't want to do this any more. So when the man showed up at her bedside unannounced to her, she simply refused to cooperate and didn't even take her mask off. The kine shrugged and left; he understood.

The hospice pointed to the fact that we didn't have a clean set of single sheets ready in case of a mindnight accident, so I had to do a wash and the hospice will do the ironing. Life is not complicated necessarily, but it certainly can be, especially now that I offered to fix a meal. Which reminds me a need to do some shopping.

Tons of medciation and materials were brought in this morning, to sustain the frail little figure in the hospital bed; frail but somehow wily, too. remarkable how time and again she finds extra pockets of energy and bounces back. I admire this broad. I chose well. She can still make me melt a little with her smile.

I have hardly looked at the headlines this morning.

maandag 7 mei 2012

Wardrobe

Monday 7 May

Any level of normalcy may best be measured in small increments over short time spans until, finally, they measure up to a trend, and then, over the long haul, to a future.

This morning Lara and I had our breakfast at the table where I dished out the headlines from the Herald Tribune (she can not handle a newspaper this size very well). It was all about Hollande and Sarkozy, and about the impossible election results in Greece. Lara lamented the fact she hadn't seen any TV news in weeks, and we plan to get her hooked up to the other oxygen machine, the one in our den which we have had since she first came home from the hospital, in July of last year.

By then the nurse had come around to do her toilettage and Saoud, our hospice for today, was going about her business. Lara decided she wanted a particular kind of cotton vest to keep her arms warm and sent me off on a mission impossible to go through her closets. Predictably, I failed miserably, so she decided to go on a foray and do her own thing. With Saoud and her Baxter in tow, she shuffled through the apartment all the way over to the other side, where her sweaters are located. She found what she wanted and brought some order in the various stacks, which had gotten a bit unwieldy under the hands of passing members of the household (which would include me).

Doctor Willemot came by, back from a monastery in the Morvan and a weekend in Orval (which is my favorite monastic retreat, too). She was astounded to see how well Lara was doing, even after having spoken to her substitute over last week, Doctor Frings. At her instruction the coordinator for home care lowered the dosage for Tranxen and morphine from 20 to 15 mg per day. We will see how that works out. Her saturation stands at 99 with 6-7 liters per minute. Her pulse is a bit high by her own standard, at 98/minute, and her tension is about her own average: 9 over 5.

Her mask doesn't fit very well and I promised to go all the way to Saint Luc and pick up a new one. I hate the ride, which will take me easily an hour and half, but it is for the poor kiddo's comfort, shall we say. We broke in the afternoon with carrot soup, sitting at the table. Before she sat down, she put on her pink turban (which we found again) and clipped on a pair of pearl earrings. Girl's gotta do whatta girl's gotta do.

This may not seem much of a morning to healthy people caught up in a hectic schedule, but really, this is progress. The only question is progress to what? Where will this all lead to? Is she going to keep on vegetating this way for many more months? Will she catch something? Is she going to wilfully force a crisis by resisting parts of her treatment? Visitors are confused. They see a person who is skin over bone, yet challenges in conversation at every turn. Doctors call her sub-terminal, but somehow she clings to life. As a result, people who had come to say their final goodbyes (like my family yesterday), don't know, at the end of the visit, whether to say "adieu" or "au revoir".

Let us see how Wednesday's blood sample comes out, when she goes in for another transfusion. That should tell us something about which way we are headed. What levels will be in evidence for white and red blood cells, and platelets. How many neutrophils will she carry? Will they do a microscopy and look for bad cells? Those are hard indicators.

We will take it one step at the time.

Until we see a trend.

And perhaps a future.

zondag 6 mei 2012

Cake

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.

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.

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.