No news this carnaval

The doctor called yesterday to inform that my platelets are still low but my red blood cells, white blood cells and neutrophils are all way up and almost within the normal range. So this is one bit of encouraging news. I've waited all evening for another call with more information, but none has come.


I feel as if I've been told the executioner is on vacation and may not come back but no one is sure. The uncertainty is very tough, but compared to "the disease is back" and "pack your hospital bag for more rounds of chemotherapy"; this is definitely better. The only thing to do is stay positive!


Meanwhile, at my urging, Toine is in Breda celebrating Carnaval with daughter Lot and family (Yasmin is very proud to be parading with Opa) his sister Hanneke and family. It is good for him to enjoy a few hours without thinking about bone marrow or platelets until tomorrow. This is of course NOT Carnaval of Latin rhythm, haughty "pompies" and high swaying hips. It is beer-splashed Nordic banging, clanging and umpaahh umpaahh.

Maybe false alarm, maybe false hope

Monday 20 February

This morning Lara and I had an appointment with the hematologist, expecting to hear what we were looking at in terms of treatment protocols, time lines and outcomes. We were in for a surprise.

Since the doctor told us on Thursday that the leukemia had returned (la maladie est revenue), lab specialists and technicians as well as hematologists had poured over the bone marrow results several times again and had reneged on their original findings. The doctor, slightly embarrassed it seemed to us, apologized for sending us on an emotional tailspin over the weekend while now stating that perhaps we are looking at a false alarm.

What is the matter, we asked? First of all, the bone marrow sample showed that production of new blood cells is poor overall. Why, they don't know yet, but the blood samples were further evidence of it, all major values coming down too low. Secondly, they had seen irregular cells that had not reached full maurity yet and that did not look like typical AML cancer cells at this stage, nor like a different kind of leukemia. They were somehow blocked in their growth. Again, they didn't know why. (Perhaps the two nasty flu's Lara is just getting over?) Thirdly they had seen chromosomal aberrations , but in a very small number of cells. Fourthly, the flow cytometric testing (Google it if you really want to know) was not dispositive either way.

All in all, upon reflection, evidence of a relapse was too thin to now launch a fully-fledged chemical assault. They preferred showing the samples to other specialists  at an independent lab and get their reading on them. As the most likely outcome they would wait for one or two weeks more, to see which way the cells were developing. She warned that news in two weeks might again be bad. She had no idea which way it was likely to go, not even a hunch.

In case the irregular cells turned out to be non-leukemic, we asked, what other disease would they be pointing to? They had no idea.

So it seems we are being granted a one or two-week reprieve. We are not putting our hopes up too high, but the present situation - even if resembling a roller-coaster ride - beats going to the hospital tomorrow and being hooked up to four different kinds of poison.

After having given another blood sample, Lara took me by the arm and we floated out of Saint Luke. Tonight we expect to hear further news.

Relapse

Sunday 19 February

“Relapse”. It grabs the throat. Bad news, yes, oh yes.  I’d hoped to have “Leukemia” relegated to the past; where it remains safely distant yet discernable to enhance the present and the future. The disease is back and it sucks. But remember, it remains treatable! It is a nasty disease and the options are not limitless; but it is a relapse, not a sentence without appeal.

I go into this with the accumulated fears of 2011; details wrapped in nightmares that are only sometimes identifiable. Sometimes I think intelligence and awareness are a curse; ignorance, denial or mental incapacity maybe blessings. This time, I go with conscious knowledge of what I need to face.  Can I prepare myself psychologically and psychically?

Mornings cause the most anxiety. I’m constitutionally against all unnecessary medications and mood-altering chemicals; but half a Xanax in the morning mitigates the panic. Exercise during the day helps to tire me, so I sleep.

I shiver at the start of every weekend: No regular staff; nurses are not always available. Insistence on a doctor when something truly feels wrong meets with resistance at best, scorn or absolute refusal after repeated pleas for attention. And when the intern-on-guard finally arrives, facile explanation, if any, is  proffered for what one’s own body and accumulated experience warns is not normal and portents a real problem. Rule number one on survival: no emergencies on weekends or the middle of the night.

My general  list of lessons learned include: keep  the control I can keep and push-for in an institution designed to control you, infantilize or diminish you in order to keep their order, schedule and sense of power. Speak up and ask all the questions that the staff may not want to deal with. Maintain the boundaries with staff, other patients or patients’ families who may consciously or unconsciously gnaw away at your privacy, dignity or last reserves of autonomy. Definitely keep the staff on my good side by using all the courtesy and respect that is correct; but remember it is my life, including my inner life, my health. Practice daily meditations that heal and keep mental equilibrium. Watch or listen-to anything funny and startle staff  with a black sense of humor. It displaces fear.

Find the small things that can make my reduced, cubbyhole existence easier to bear. Listen to books, TV, read the Herald Tribune - word jumbles included - use earphones when the doctors talk to the other patient so that it doesn’t upset me; devour individual portions of Haagen Dazs that they won’t take away, microwave ethnic (and therefore safe) dinners; keep as much view of the window as possible to experience the weather and season.

Contact with family and friends is THE lifeline. Without them, I certainly would not have made it. They give me the hope, strength, courage, humour, energy and will to make it.  And Toine most of all. My love, comrade in arms-since our very first war zone, mischievous companion. And sometimes he needs freedom and to escape from all of this.

Picture

This picture was taken in December, just after her first hair cut in one year, at Rob's Market in Brussels, where we had put together Xmas baskets for the hematology and intensive care units of Saint Luke's hospital. We both wanted to thank the staff for all they had done for Lara, returning her to life.

Bad News

Thursday 16 February

This morning Lara and I went to the hospital for a checkup with Lara’s treating hematologist. A blood test was taken soon after we arrived. The results were not encouraging, she said straight out. All major values were way too low, a trend that had started a month earlier, blood platelets first. None the less, a bone marrow puncture on 16 January had shown no irregular cells, leaving her in 100% remission. So that was still good news, but the dropping values remained à suivre. Two weeks later, platelets had dropped further, to 88, while the desirable lower range is 150; reason why a new puncture was scheduled for today. This morning’s blood test results made a puncture all the more imperative. The doctor wanted to see what was going on and especially if the familiar pattern of dropping blood values pointed at a relapse of the leukemia, as it is known to often do.

Was there a more benign explanation for what she saw, we wanted to know? About three months ago, we reminded, Lara caught a tenacious flu from a careless physical therapist, who was practically coughing in her face; it took her a month to get over it, only to make room for two successive colds, the last one contracted from a different physical therapist. (Lara now stopped going to any of them.) She was still coughing from it as the doctor examined her this morning.

The doctor conceded that the values might have been repressed by a series of viral infections Lara has been battling since end November. She sounded hardly convinced, though, of that line of reasoning, clearly stating she had her own soupçons. Still we clung to it as the worst possible explanation was hard to absorb at that point.

It all boils down to the question if the bone marrow shows any bad cells, said the doctor as she was about to do the puncture. That is where we left it before exiting the hospital. Tonight, said the doctor, I will call you with an answer to that question as soon as the microscopic cell test results come back from the lab. We will take it from there, she intimated. Even so, the three of us discussed about the possibility of resuming chemotherapy.

Then, at around seven o’clock in the evening, the call came. The disease had come back. It had evolved differently, the doctor said, but it was still AML. Therapy was to start early next week.

And so the cycle runs.

Prologue

If you are reading these words, you will likely have read about Lara Gabriel’s health problems in a previous blog covering the period between end January 2011 and end October. (The URL is laragabriel.blogspot.com) Friends and family were hopeful they could treat the old blog as an account of something ugly that was part of a definitive past, never to be revisited; or, at best, as a lesson in courage and love, to be emulated in case of need.

It was not to be.

Tough times lie ahead for Lara, and for everybody she holds dear. Just reading the blog faithfully will send waves of strength to her. Light a candle, say a prayer, incant, invoke or meditate. Remember also to participate in a new mantra we are rolling out as off right now. Remember to use it during those lost moments that occur in anybody’s day, standing in line, waiting for the light to turn: healthy, healthy, healthy (with the emphasis on the second syllable).