Louise 2012



2012

Although Lara's overall condition improved over the second half of 2011 and into the spring of the new year, she continued her pattern of taking regular naps during the day to regain energy. The smaller of the two couches we have in the living room became her preferred station in the house. Here she is, sporting her Audrey Hepburn look.

Last calls

I can imagine that many friends of Lara's around the world are reticent when it comes to deciding to give her a call. It is of course up to them if they feel the need for one and wish to act on it. Some friends prefer email, post cards or short messages. I read them to her religiously. Phone calls are more direct, and many cannot handle the emotional strain. We understand that. We feel the same strain, Lara first and foremost.

Lara does not have many days left. Tomorrow it will be fifty days ago since she was told to go home and fade away. The fifty days, in hindsight, have been a wonderful opportunity to say goodbye and thank you to life, family and friends. But time presses on. If there are among you who want to talk to Lara over the phone, just do it at the next available moment. Don't risk being overtaken by events. Please observe the hours between 11:00AM and 7:00PM CET. She will be glad to take your call, even if briefly. The numbers are in the heading of the blog.

Family

Wednesday 6 June

If yesterday was a pretty hefty day, today augurs rather well as off this morning. Hearty breakfast and more active conversation as we partake of it. "Shall we go for a walk downtown?", I suggested. Lara caught on immediately. Perhaps a visit to the family, she proposed, ignoring the rainy weather in Brussels. "The family", down on Chaussee de Waterloo, is her personal reference to the likes of Ferragamo, Chanel, Versace, Vuitton and Gucci, who have all opened shop around there. And, she continued, maybe a second cappuccino, and some light lunch involving a crunchy salad. I am game!, I said. And we continued our virtual tour.

There was another reason, besides indulging in phantasy, to imagine herself out of bed and out of the house. Something is wrong with her inflatable mattress; it doesn't alternate anymore, as it is supposed to in order to prevent bed sores. Already red markings are noticeable on Lara's back, as the nurses have reported for two days now. It is uncomfortable. I lowered the air pressure, making the bed much softer, while waiting for the company to pass buy and fix their material. As she is in bed most of the day and night, and on her back, a comfortable mattress is key to her well-being. As it happened, the company came by around 3:00PM and exchanged the air pump. It now works fine.

The nurses took another blood sample this morning and the lab courier came by the house to pick it up. Around 3:00PM I received the results back through Doctor Willemot, our GP. Red blood cells down to 1860 (was 2360 on Saturday), hemoglobin down to 5.3 (was 7.0), WBC 2250 (up from 1600), neutrophils 23%, lymphocytes 40%, platelets 0.02. The most worrisome is the hemoglobin level. As soon as it dips below 4.0, Lara is unlikely to wake up anymore. At least that is my understanding. It has descended from 8.2 one week ago. I take into account that her last transfusion was two weeks ago. Still, if the dip is projected as a linear one, it is hard to see Lara live beyond the weekend, all things remaining equal. Then again, I am not the doctor.

Willemot completed her own visit around 11:30AM and was not unhappy with Lara's overall condition, quite apart from the quality of her blood. Blood pressure 9 over 5. Main problem is still the coughing (la toux), and how to keep it in check and how to avoid reflux.

Tomorrow morning Professor Wilfried Schroyens, hematologist, chef de clinique at the University Hospital of Antwerp, will pass by and examine Lara. He will have himself briefed in advance by his colleagues at Saint Luc. He is the brother of our homeopath, Frederik Schroyens. A last minute effort.

Mozart

I remember it well, 1991.

It was the year Mozart died, 200 years before, on 5 December. That night I went to a meeting of my brethren in Geneva. One of them, a renowned physician, gave a masterful presentation on what he died of, Mozart, a fellow-mason. Towards the end, the doctor asked himself the question of how, today, a patient with the same symptoms would have been treated in a modern hospital. He held up a small box of pills; antibiotics to be taken over a period of two weeks, for the sum total of 12 Swiss francs and 50 centimes. Had they been available in 1791, Mozart would have lived to compose many more operas, concertos and symphonies.

Lara need not die of what she is suffering from. It won't even take 200 years before they find a more reliable cure for AML than pumping randomized poisons into your body while telling you not to go fall off the deep end. I will live to see that day, mark my word. And I will be very very angry at the evolution of medical history. And very very sad for having lost a beautiful wife through bad timing.

Matzos

Late afternoon

Lara has conked out. In fact, she has been sleeping much of the day since she woke up around 8:30AM. That is a pattern we are told will unfold more and more in the days ahead, with increasing intensity.

Besides a few sips and bites for breakfast, she has not eaten anything, and the little she ate she returned. Anemic and in aplasia, with no food, there is small wonder she is as feeble as she shows herself. Saturation is at 99 (almost too good), her temp is below 37.0C and her blood pressure at no more than 9 over 4. At noon her morphine was scaled back to 10 mg a day, from 12.5.

We will try and make her eat something like pumpkin soup with cilantro, a bit creamy for her taste normally, but, hey, she won't exactly gain weight over it now. Maybe some crackers (matzos), and later this evening some rice pudding. At least she drinks regularly.

This afternoon, Lara performed a complicated transaction on line, and even though I coached her a little (she types very slowly), she was literally in the driver's seat. She was shivering with adrenaline by the time it was successfully over, walked from her desk without oxygen and slumped back on the bed. Twenty minutes later her brother Gordon invited her for a Skype conversation, and the two talked for about ten minutes, setting a date for the next one (a hopeful sign somehow). Then promptly fell into a deep sleep.

Several people are cueing up to call her from abroad: California, New York, Spain, France. I have to master it carefully, so everybody gets a small piece of her. Not that she doesn't care to speak to her friends, she just doesn't muster the oomph.

Tears

Lara and I are prone to crying in the face of something sad, joyful or overwhelming. I will spare you examples, but especially in the movie theater there is a lot of sniffling going on between the two of us.

Now both faced with a fully fledged drama, we somehow manage our crying differently. Surprisingly perhaps, Lara does very little of it. I, on the other hand, a lot. Little things may trigger it, rarely anything that happens in the moment. More so when I am reminiscing, digging into old batches of photos, or when somebody sends me a personal memento or heartfelt note over the internet.

I don't hide it anymore. Lara's caught me crying, as she looked up at me from across the room as I sit behind my laptop, covering my face or whiping my eyes. I am not in the least bit self-conscious or ashamed. Social dictates tell me of course to show fortitude at all times, for the good of the patient. But why should we be hiding sorrow from eachother? We are soulmates in every other way. If it were glee or contentment, we would share it readily and hop up and down together. Why is grief so underrated and why should sorrow be suppressed? I am about to lose my partner and I should just keep on swallowing hard? Please.

When Lara catches me in tears, she motions me over and puts my cheek on her chest, stroking my hair. It relieves the anguish of the moment. It doesn't heal the lingering sadness.

Haydn

Tuesday 5 June morning

Did you want to hear some soft music? I ask her as she is sitting across the table for breakfast, her head resting in both hands, elbows on the table. Her complexion is pale, her eyes tired and half closed. I made her a latte this morning and she drank about half of it, with pleasure, along with two bites of yoghurt with apple. "I am trying to keep everything in balance right now."

True, as soon as she woke up this morning she started coughing, sounding encombree for the first time, congested. Queaziness followed, although there was nothing in her stomach yet. I am feeling weaker again, she said, so let's do this morning whatever we still have to do. We will, I said. The nurses (the regular one plus a trainee) had come and gone, and slipped her into a black skirt and a purple top. The garde-malades arrived half-way through the routine.

Put me on some Haydn, she said, staring into her breakfast bowl. Not a surprise. As long as I have known her, she has had this predilection for the Austrian composer. So I put on symphonies 101 and 102 by Harnoncourt. I know she likes them and soon the music floats tenderly across the room to her bed. I need to lie down for a moment now, she says. Within a few minutes she drifts into a snooze, recovering from this morning's exercise.

Barely are we into the second movement, when a different nurse arrives - one who is responsible for the morphine and tranquilizer pumps (also accompanied by a trainee). So between 8:30 and 10:30AM already five people have been to her bedside. Plus her dumb husband. That company alone is enough to be a strain on her. I walk over to the bed and give her a kiss. Music all right like this? Just fine, she says.

At the nurses' suggestion I carry a humidifier into the room and put it up close to the bed. perhaps the dryness of the air, and the fact that she breathes through her mouth a lot, keeps provoking the cough. I know these are rearguard skirmishes, but I fight every last one of them. Some of them I lose: Lara wants to forget about transfusions at home.