Saturday, March 14, 2015

Medical & California - pour les francais, quelques nouvelles photos de l'hiver

I've never been a procrastinator, but I am a bit of a perfectionist which results in my spending many hours to write one of these texts, more to add photos, and more yet to translate. The result is that the latest two Brazil-related texts I had finalized while already being back in the US. In fact, I returned to Cambridge on January 30th (I think) at the very end of the second major snow storm to hit New England this year. I was so elated by the immaculate blanket of white when I exited the T at Harvard Square that I walked home dressed only in a sweatshirt and windbreaker, but with my soul still radiating the 100F I'd left in Rio only 20 hours earlier.

My return had been prompted by an appointment with the allergy doctor at Beth Israel, to try to find an alternative so that I could have a complete set of exams, including with contrast dye, which I had grown seemingly allergic to after the scans of last June. I met with her four days later and three days after that, I flew back to Portola Valley above Palo Alto to join Amit and friends for his official 50th birthday celebrations.

Edward, Sushil, et Amit

La Baie de Monterrey en arriere plan (Fabien, tu reconnais?)

Between unbelievable meals and cupfulls of the Blood of Christ, we enjoyed a number of outstanding mountain bike rides with friends from as far as Delhi (Sushil had also come just for the occasion). I found my legs eager to pump more than they had last year, and so Amit generously lent me one of his Santa Cruz bikes, a Tesla among mountain bikes. We rode trails in Marin County, Santa Cruz, and of course the more local ones, including Alpine Rd which ends with a wicked road climb to return to Amit's house. I thoroughly enjoyed the sweat and the aerobic workout, but the friendship gatherings that happened two out of every three evenings were even richer. I also enjoyed a delightful evening at Klaus and Adda's who always find a way to organize a dinner with friends in spite of the physical challenges of their age. Joachim had just arrived from Badenweiler, Hanna was enjoying her 1/3 of the year in Palo Alto (the other two thirds being spent in Paris and Jerusalem), Mark rode over from SFO, and another couple of Parisians who were staying for a few days all sat around the table, as if we were still living the times of "c'est une maison bleue...", a famous French song depicting a house open to all friends and travelers in 1968 San Francisco. The house on Southampton St isn't blue in color, but it sure remains bright blue in spirit!

The warmth and generosity in both houses and dinners were equally abundant, but the staggering difference in the lifestyle between our generations' tech gurus versus the hard-working managers of our parents' generation is the greatest example of the growing gap in wealth that Thomas Piketty, Joseph Stiglitz, and numerous others are pointing to as utterly unsustainable. On trails and in shops throughout the Bay Area, $8,000 mountain bikes are the standard and on the road Tesla s are the most common cars with a $100,000 tag. Sure, there's the cool stuff, like Google's self driving cars being tested in ordinary traffic, or the latest sport Tesla, which we test drove, that comes pre-equipped with everything to make it self-driving as soon as this is legal, with nothing more than a software upgrade. But comparing that to building roads, laying railroad tracks, running electrical and phone cables, or building the Hoover Dam somehow reminds me of Buz Aldrin's comment at MIT "you promised me Mars, instead you gave me Facebook". What's the real value of all this tech, even in medicine of which I have been one of the largest beneficiaries? Even realizing that my two visits to Amit's, all our bike rides, my amazing trip to Europe last summer, and my January in Rio have all been possible thanks to the miracles of modern medicine, I am deeply skeptical about the long term consequences. 

The essence of Life will remain a mystery forever; it is its very nature. Medical progress comes at the risk of overcrowding the planet. It seems to me we must slow down what we call "progress", and redefine it. Automation was brought in to enhance workers' safety and to increase productivity, giving humans more time to do other things, like maybe enjoy Life. But we have become slaves to all technology, whether automation or the internet, and in fact the time we have available to ourselves has undeniably shrunk. Philosophical ponderings aside, I deeply appreciated the two weeks spent in Portola Valley, and returned only to prepare for my next set of exams.

But when I arrived on the heels of the fourth snowstorm in three weeks, I found my voicemail and email swamped with distress calls from numerous desperate homeowners whose homes were suffering from the tremendous ice dams. I have thus committed to helping a few select clients out to repair their homes and to try to install preventive measures against future winters, since this pattern is, as I recall, precisely what the first meeting of the IPCC in Trieste had foreseen: overall warmer winters, with more extreme temperature swings, and more intense storms. 

my truck at Claudio's

If I regretted not having done my annual pilgrimage hiking up Mt Washington in the first full moon of the year, I nonetheless managed to capture an appreciable photo of the third full moon of 2015 over Boston On Ice, from the center of the frozen Charles River (photo below). I had also been fortunate to have window seats and a clear view on three of my four flights between BOS and SFO and you can look forward to a future photo essay, similar to the one on my leg down to Brazil.

MEDICAL MAYHEM RETURNS: If technology gave me the wings of steel (and fabric - parapente!) to travel, and in medicine saved me from cancer, or at least postponed my departure from this physical existence, it certainly has not helped the administrative end of things at Beth Israel Deaconness. On Thursday 5 March, I received a long briefing by phone from my Oncologists' Intern ML Peters. She reminded me to take the Prednisone and antihistamine doses exactly as prescribed at specific intervals during the thirteen hour period prior to the MRIs, which were scheduled for Monday 9 at 7:20AM. She carefully went over all the specifics of the procedure as we had defined it with the allergist. What a surprise to receive Friday night at 8PM, even as I was lying down on the frozen Charles to take my photos of the full moon, a call from the radiology department informing me that they hadn't received the insurance referral papers... ML and even Rebecca offered to help when I alerted them on Saturday, but all offices were closed, both at the insurance, and the administration at Beth Israel. So despite months of anticipation and weeks of careful preparation, I had no choice but to postpone.

Tuesday afternoon, I was officially cleared for the CT scan on Wednesday at noon. All went well except that I appear to have subsequently reacted strongly to the double dose of Benadryl, and wound up collapsed on the couch and virtually annihilated for 36 hours. In the interim, I received a call from the hospital clearing me for the MRIs which had been rescheduled to Friday at 9PM. I managed to recover from the nausea in time for our first movie night of 2015 which was as wonderful a movie (La Cage Aux Folles, 1978) as was the company that gathered, but I collapsed again at 11PM.

Friday, I left at a brisk pace at 7:30 in frigid but crispy blue New England winter air. Gene, who was walking Annie, walked with me all the way to the Kennedy Bridge, and then I pressed on and arrived early for my biofeedback appointment at the Pain Clinic in Brookline Village. I felt elated by the clear day (even though I'd left once again very much underdressed for the temperature) and my session was by far the best I'd achieved so far. I felt zen and relaxed and spent half an hour bouldering on the granite wall across from the Longwood T stop and enjoyed the bright morning lights' projections of objects on a brick wall. I walked back to Harvard Square for my EMDR pain treatment, and then back to BI in the best of all possible worlds for the MRIs.

elegant tree


Red flags often come up unnoticed, but although I noticed a sequence of them, I was overcommitted to having a full batch of scans done, since I hadn't completed a scan with a contrast agent since June. Lori, the nurse who ran down the preliminary questionnaire, stated she hadn't seen any indication of the specific protocol that we had so carefully put together with the allergist and ML. I had to show her that ML had given me her pager number in case this were to happen, before she went back to "look in other areas".

Finally in agreement as to the procedure to be followed, she hurt me so much inserting the first IV that she had to remove it; her second attempt gave the same result, and on the third one, evermore desperate at getting through with those scans, I literally sweat the pain out as she fidgeted with the catheter in my veins. But at the moment for her to inject saline, she let out a jet of blood that splattered all over her and the floor. Clearly in a semi panic, she took off her bloodstained glove and reached bare handed into the pack of sterile gauze which she applied on my arm asking me to please hold them in place. So much for the boxes of hundreds of sterile gloves everywhere; when the shit hits the fan, whether you're at BIDMC in Boston or in some god forsaken place in the boondocks of Burma (no specific discrimination intended), the procedure followed by nurses clearly differs little, if at all.

At that moment, I remembered that in exactly that same room I had suffered exactly the same sequence of events many months earlier, with a young male nurse. He had hurt me like no other nurse had ever hurt me when inserting the IV, and he had let my blood escape, and also grabbed sterile pads without a glove. In a truly weird, though not unsurprising, twist of fate, as I was holding the pads on my arm, that very same man came into the room, Mike! By now, the tradeoff between the pain in my arm, the memory of what seems to me as medical mistreatment, and my anxiety at a possible new allergic reaction were all beginning to seriously weigh against my desire to get these scans done.

Most fortunately, the radiologist came to check up on things. Liz was zen, smiling, caring, simply a nice, friendly, and understanding person. She clarified in every detail the protocol precisely as we had defined it, and she added another preliminary offer: she would inject me as I sat in the chair with a test dose of the contrast agent. I agreed and I was very calmed to announce that I felt absolutely fine. So we moved to the MRI scanner.

ALLERGY TO CONTRAST DYE: After perhaps twenty minutes in the tube, I began to feel a slight tingling in my deep throat, similar but infinitely weaker than what I'd felt in the three last allergic reactions. I thought about it and convinced myself that this was just psychosomatic apprehension. But after another few minutes, my mouth began feeling a bit swollen or numb. When she checked up on me, I asked Liz if she could extract me for a minute or two, just to be sure. She did, and after a minute back in the open air of the room, I felt better and went right back into the tube.

As I followed the automated instructions to "inhale, exhale, hooooold your breath.....breath normally", I felt my diaphragm increasingly irritated by the sensor cage that was laying on it and I feared a spasm. I asked to be extracted again and Liz shifted the pillow under my head but said the cage was a necessary part of the imaging. So I went back in. Another ten or so minutes later, as my shoulders were also beginning to strain, she announced she would shortly be injecting another small dose of dye. All this went by without a hitch. Another five or ten minutes later, she asked if she could inject the entire dose, and I agreed. The magnets were spinning and clunking wildly in extreme noise, so I dont think I heard her say precisely when she injected the total dose. But suddenly, just as the previous three times, my throat started to itch crazily, so much that I could not breath. Just as I called to be extracted, before even pressing the emergency ball, the automated voice told me to hold my breath, and somehow, I froze for a few seconds. For whatever reason, this was just enough to release my throat and despite its being very sore, I remained without moving until all the scans were completed. 

When I was finally extracted fully from the tube, my throat felt as if I'd swallowed a ball of fire and my tongue was completely white, but I was absolutely fine elsewhere. Mike then remembered me and added "next time, try to schedule it on an early weekday rather than late on a Friday night". Indeed, it was the day he had attended (brutalized?) me that I had had the first allergic reaction, and it had also been a Friday night. That first time, I had completely panicked, attempted to pull myself out of the tube, and stood up completely against their safety protocol. When Mike had tried to physically force me back onto the bed, I had sent him flying, which had resulted in calling Security, who fortunately turned out to be a couple of Haitian guards, and proper explanations in French rather than in the language of conflict had resolved the behavioral part of the problem; still, I had been held under medical monitoring for over an hour, even though all my basic indicators were absolutely normal. None of the radiology staff, nor the allergist have ever seen the kind of reaction I have had to the MRI dye. Furthermore, allegedly very few people have any issue with this dye, whereas reactions are very common to the dye used in the CT scans, to which I have thus far demonstrated no least sensitivity. Such are the unknowns in dealing with humans, possibly the most complex "thing" in existence. Does that justify more research to find alternatives for my future scans? An endless pondering... but I am comforted by your friendship and affection. See you soon! Oh, results expected on April Fool's day!

Celebrate Each Breath...


malgre les apparences dues au temps que je mets a traduire les textes et inserer les photos, je suis rentre a Cambridge a peine aux premiers rayons de soleil qui avaient chasse la deuxieme tempete de neige vers le 30 janvier. Parti de Rio mardi soir par 38, la neige etait tellement belle et le froid ennivrant que je suis rentre a pied depuis le metro de Harvard (une petite demi heure) vetu d'un pull leger et d'un coupe vent pas moins leger. C'etait superbe! Deux jours plus tard, rendez vous chez l'allergologue avec qui on a etabli un nouveau protocol pour essayer de me faire tolerer l'agent de contraste pour les prochains scans qui etaient prevus lundi dernier.

Entretemps, suite a une invitation irresistible et toujours aussi genereuse d'Amit, je suis reparti a Portola Valley/Palo Alto en Californie pendant deux semaines. Non seulement nous nous sommes gave de sorties en VTT pendant lesquelles j'ai encore repris un peu de forces, mais Amit celebrant la fin de son annee sabatique en hommage a ses 50 ans, nous avons deguste des mets et des vins pendant toute la semaine de son anniversaire tout a fait exceptionnels. Autres curiosites, nous avons essaye la nouvelle voiture electrique sportive de Tesla qui concurre en depart arrete avec une Ferrari. Non seulement la technologie mecanique est veritablement impressionante, mais en plus, il suffira de modifier le logiciel pour qu'elle devienne entierement auto-conduite - sans la moindre intervention du "conducteur" des que cela sera legal. Car ca vient a grande vitesse a Silicon Valley! On a suivi une des voitures auto-pilotees dont Google en a plusieurs en circulation, avec des ingenieeurs a bord qui font les moindres corrections. Il faut dire que c'est un vrai monde de fous richissimes qui vit la-bas:
la remuneration moyenne d'un habitant de la region doit depasser le million de dollars annuels, et on voit partout des velos a $10 000 et des voitures a $100 000! Comme le decrit si bien Thomas Piketty dans son Le Capital au XXIeme Siecle, le fosse entre riches et pauvres est een train de s'agrandir. Et les riches claquent leurs dollars de maniere hallucinante, qu'il s'agisse de gadgets electroniques ou de nourriture souvent gaspillee, on se rend bien compte d'a quel point la consommation fait avancer l'Amerique! Mais si on en a, autant en profiter.

Plus terre a terre, j'eus aussi le plaisir d'un diner chez Klaus et Adda avec Joachim qui venait d'arriver d'Allemgane, Marc (fils de Klaus de mon age et qui continue une vie passionee organisant des tours a velo de San Francisco), Hannah (qui continue a se ballader entre Palo Alto, Paris, et Jerusalem), et deux autres amis de passage. Ce fut un de ces diners entre amis qui se refont a l'improviste des qu'un ami passe, que Klaus et Adda, malgre les difficultes physiologiques qui leurs viennet avec l'age, continuent d'organiser en simplicite et profonde amitie. Ici, nous ne sommes pas chez ces multi millionaires cinquantenaires. Leur maison est l'une des tres rares a rester occupee par des durs travailleurs des annees 60. De fait, tout le monde a table ressemble bien plus a des soixante-huitards et gauchisants a peine modernises; pourtant, cette maison et le simple train de vie qui a telle epoque semblait bien privilegie,  semble desormais humble en comparaison a la nouvelle richesse decuplee cent fois a Silicon Valley depuis les annees 90. Folie d'un monde insoutenable...heureusement que perdure l'amitie au dela des evolutions socio-economiques.

Puis ce fut le deuxieme retour a Cambridge, qui avait entre temps ecope de deux autres tempetes de neige et de temperatures glaciales, descendant a -25. Le resultat a ete des effondrements de toits et surtout des fuites, dues a l'accumulation de glace le long des bordures qui remontent sous les ancelles de goudron puis degoulinent a l'interieur des murs, innondant les plafonds. J'ai accepte d'intervenir chez trois bons clients et amis afin de les depanner des que le temps s'ameliorerat. De ce fait, je pense ne rentrer en europe qu'en mai ou juin. Ma maison heureusement n'a pas souffert et je m'en flatte un peu; vive la bonne construction!

rideau de glace typique de cet hiver

Adorant malgre tout l'hiver bostonnien, je me suis aventure de nuit sur la glace au milieu de la Charles River, encore completement congelee, pour pendre une photo de la pleine lune voici dix jours. Lorsque je me relevai tremblant de froid apres un quart d'heure (pas si facile de faire une photo acceptable sans trepied), ma chaleur avait fondu suffisamment de glace pour que mon pantalon en soit trempe - qui re-gelat rigide instantanement avec le vent glacial. 

Boston on Ice, March 2015

Jeudi voici dix jours, la medecin assistante de mon oncologue m'a donc appele pour me rememorer le protocol de preparation en vue des scans de lundi matin a 07h20. Super! Sauf que vendredi soir a 20h, coup de fil du service de radiologie qui m'annonce froidement que les papiers de reference pour l'assurance n'ont pas ete soumis par le bureau de mon oncologue... et donc qu'en cas de refus par l'assurance a posteriori, c'est moi qui devrais avaler la facture (une dizaine de milliers de dollars, rien que ca). Panique une fois de plus, bien sur l'assurance n'a pas de permanence pendant les fins de semaine, et meme ma chere Rebecca ainsi que son assistante medicale ML (Mary Linton) ont tout de suite offert d'aider, mais sans plus de ressources que moi face a la bureaucratie... Mardi en fin d'apres midi, ML me confirme que je peux faire le CT scan comme prevu le mercredi, avec une forte preparation d'antihistamines pour limiter une eventuelle reaction allergique a l'iode, agent de contraste connu pour declencher de telles reactions. Je me sens un peu groggy mais je passe les examens sans reaction au contraste. J'arrive a peine a conduire pour rentrer a 13h, et m'effondre sur le canape ou je reste completement abassourdi et avec des hausses de nausees pendant des heures. Finalement a 19h, je m'efforce de marcher 45 minutes jusque chez Juan ou un diner est prevu entre amis. Je m'arrete plusieurs fois mais finis par y arriver. Mais vers 23h30 je me sens tellement mal que je decide de rentrer. Je mets presqu'une heure et arrive chevrotant. Il faisait -7 ce qu n'est en verite pas tres froid. Effondre dans mon plumard, je passe la nuit a trembler comme un fou. Du coup je reste sans bouger jeudi. En debut d'apres midi, Lauren (assistante admin de REbecca) me confirme que les IRM ont ete finalement autorises par l'assurance et qu'elle a trouve une place pour le lendemain, vendredi a 20h. Afin d'eviter une reaction allergique, je dois donc aller a la pharmacie chercher du Prednisone et encore de l'antihistamine. Un peu d'air glace me congele le visage mais le ciel bleu bostonien est incroyablement beau, surtout sur le lac encore gele. Puis, j'avais retenu La Cage Aux Folles pour la premiere soiree cinema de l'annee. Une dizaine de voisins et amis sont venu et j'ai reussi a ne pas m'effondrer avant 23h00.

Parti hier matin a 7h par un soleil d'azur , tout gaillard optimiste en sweatshirt (ne m'etant pas rendu compte qu'il ne faisait que -2 et etant trop a la bourre pour remonter prendre un manteau) pour me rendre a la clinique de la douleur, mon voisin Gene qui sortait son chien, m'a accompagne a bonne allure pendant la premiere demi heure de marche. Ma session de Biofeedback (mesures de rhythmes respiratoires et circulatoires qui sont censees reduire la douleur et peut etre les spasmes a long terme) se deroula superbement bien, tant qu'en sortant, je profitai du soleil qui rechauffait le mur le long du metro exterieur pour faire une petite demi heure de traverses de varappe (bon, mon niveau est moins que debutant, mais avec un peu d'enthousiasme...). Je rebroussai trois quart du chemin jusqu'a Harvard pour voir mon autre therpaeute de la douleur (technique de desensibilization des yeux = hypnose en gros), puis revint a nouveau avec un poil d'apprehension pour les IRM. Je dus me soumettre a la douleur de trois perfusions, les deux premieres etant tellement douloureuses qu ne parvins pas a les tenir; a bout de recours, je reussi a surmonter la douleur de la troisieme et du moi meme laver le sang que l'infirmiere avait laisse gicler. Pas un beau presage, mais un moindre mal...On m'injectat un premier quart de dose du nouvel agent de contraste, et je ne ressentis rien de particulier. Cinq minutes plus tard, on m'enfourna dans le tube de l'IRM. Je respirai le plus tranquilement possible, sans pour autant eviter une grande apprehension au cas ou je serais a nouveau asphyxie lors de l'injection de la dose complete. Au fur et a mesure des 45 minutes d'examens sans contraste, je sentis ma gorge se gonfler un peu; j'avais aussi la langue pateuse. Je le commentai a la radiologue qui tres gentiment m'extrait du tube par mesure de precaution. Sans me preocupper outre mesure, nous reprimes les examens. Puis, elle m'annoncat qu'elle administrait a nouveau un quart de dose de l'agent de contraste, et cela se passat sans changement perceptible. Elle administrat donc la dose complete tandis que les aimants commencaient a tourner en faisant leur tintamarre infernal. Et la, je sentis ma gorge se gonfler. Mais au moment meme ou je demandais qu'elle m'extraie, la machine m'ordonna de retenir mon souffle, ce que je fis sans reflechir. Deux secondes plus tard, toujours tenant mon souffle, je sentis ma gorge se liberer, et l'on parvint donc a completer toute la serie d'images - un vrai bonheur! Cependant, le produit m'avait bel et bien brule la gorge (un symptome jamais vu par aucun des trois radiologues venus surveiller) et j'avais la langue blanche comme neige. J'avais vecu un moment d'angoisse incroyablement dense. Ni le couteau qu'on m'avait mis sous la gorge mon premier hiver a Cambridge, ni les ados aux bazzokas qui m'avaient arrete au Cambodge, ni la vace qui avait saute devant moi sur une mine, pas plus que les assauts au pistolet ou a la mitraillette dans divers autobus au Bresil ne m'avaient cause une angoisse si prenante; et pourtant, j'etais hyper surveille! Combien il est dur de controler son subconscient. Je sortis dans la nuit glaciale et marchai encore 5 miles (1h15) jusqu'a ce que Roberto vienne me recuperer pour diner et passer une nuit blanche a decompresser. Resultats complets esperes le jour du Poisson (d'avril).

Programme a moyen terme: une ballade d'une dizaine de jours par la fin d'hiver en nouvelle angleterre en fin de semaine prochaine, puis bosser avril et mai, et retour en EU mai ou juin jusqu'a la mi septembre. Une semaine en tout cas au Chateau Mounette si l'acchueilest disponible, 2 ou 3 semaines a Trelechamp, quinze jours de voile voire trois avec Ambrogio en Ligurie, et en tout cas debut aout en allemagne pour la fete a Weinheim avec Ricardo et Claudia (pas vue depuis 20 ans), ballade a Heidelberg avec Matthias et Renata, velo avec Joachim, puis deuxieme quinzaine tentative semaine de parapente et marche avec vols bivouacs en compagnie de Bicudo, Thomas, Dede, Jean Marc (ah, vous ne saviez pas?) et peut etre d'autres amis. Entretemps, visites a Trieste, en Espagne, dans le Cantal, cote Atlantique, Bretagne, ...qui sait, peut etre meme Paris et Bruxelles ou le UK...


Suivra un relat de ces deux voyages aeriens au travers des US, car j'ai eu la chance de hublots, comme represente ci-dessous.

Lassen Peak et a l'extreme nord dee la Californie (horizon d'image, a 200kms) le Mt Shasta avec ses 4300m
vus depuis la frontierre avec le Nevada
Shasta que mon pere Francois a tant aime qu'il avait ainsi baptise son bateau