It's been five weeks yesterday since I had my last chemo session, which always includes meeting with the oncologist in the morning before the treatment. During our discussion, we went through the checklist of my symptoms following the previous treatment and there were practically none except the increased loss of feeling in my fingers and especially my feet which have become even painful at times. She acknowledged that this is an unfortunate and common side effect of the treatment and assured me that I would recover from this although insinuating that it could take months.
We returned to Heuchin where we rejoined Alec and Virginie, Madelaine, Richard and Élodie for several weeks of family fun. For me, the best way to recover from the last treatment was to be distracted by the kids and The Most Beautiful Baby Girl. Most mornings when I would get up and go to the kitchen I would find Richard making his first cup of coffee and Élodie in her baby-bouncer. When I greeted her I would be rewarded with a big smile and after a couple of weeks even some cooing. I could just get lost in her smiling eyes and everything else in the world ceased to exist. Now I understand why Buddhist literature often mention children's smiles or laughter as a means of bringing one into the moment.
But how quickly I can forget all my lessons of patience accumulated over the past months. Almost as soon as began to actually integrate the fact that I was in remission, I was confronted with my old friends, Vanity and Impatience. "OK, fine, I'm over the cancer. When do I get to have hair? And don't forget about the eyebrows and eyelashes either!"
Last week, Mr. T and I went on vacation for the first time since my recovery. Although we didn't have as much sunshine and lavender in Provence as we would have liked, it was great to be taking a real vacation. I realized that "going away on vacation" is not the same thing as "not working". So I could really feel that life was slowly beginning to return to normal. I'm still reminded that I'm not yet out of the woods every time I look in the mirror or when I try and take those first painful steps in the morning on my wooden-blocks-for-feet.
I am so anxious to not only turn the page but to close the book entirely that I find that I have been avoiding all things related to being sick, such as writing in my blog. It's taken me five weeks to sit down and write again because I have been deliberately avoiding it. It struck me yesterday how selfish that was because I am also avoiding all those folks who have stood by me throughout this incredible experience. It's as if I don't want anyone to ask me how I'm doing since it reminds me of having been sick for so many months. Actually, I should be a bit more grateful to be able to say that I'm doing really well all things considered.
In reality, I am hugely grateful that I have had this heavy feeling of "what if or what next" lifted from me. It's tempting to use the out-of-the-can expression of "a sense of impending doom", but I don't remember every really feeling like that. I knew that women died from what I had; I knew that the statistics were not favorable to say the least; I was occasionally awash with fear of dying, but I just kept plugging along doing the next best thing. I hung onto the words of Mr. T (who normally puts the bar so high that's it's hardly worth undertaking whatever the endeavor may be): "You don't have to win the gold, you just have to be on the podium". And so here I am.
So now I'm in the post-cancer phase which includes check-ups every three months to begin with and which will probably taper off to every six months eventually. I also have my immunization treatment which will start in September and last for several weeks. However, there are no side effects to be worried about so I just have to show up and take the shots at regular intervals.
I'm beginning to think about going back to work which was something I couldn't even consider a month ago. It's hard to imagine getting back into the swing of things but I guess that all things come in time.
So before closing out this blog, I would like to thank my friends and family for all of the support, from near or from far, that I have received. When I realize how much folks were "rooting" for me, I wonder how I ever could have felt lonely before.
Now I know that after the fog comes the sun, and "it's gonna be a bright, bright sunshiny day!"
Wednesday, August 3, 2011
Wednesday, June 8, 2011
Bonnes Nouvelles!
After dragging around for what seems like weeks, I was relieved last week by a procedure, the thought of which had caused me a certain amount of anxiety: a pleural puncture, to draw off some residual liquid that had accumulated in the bottom of my right lung as a result of the surgery. Although I dreaded the worst, I only felt the needle she used for the local anesthetic and then nothing thereafter. When I left the hospital, I felt as if I had been given wings!
This procedure was nestled in between the MRI the day before and the PET scan two days afterwards. Being a cancer patient sometimes seems like a full-time job. I spoke with the doctor before the PET scan and emphasized to him that I had a meeting with my oncologist on Tuesday the 7th, which was yesterday. He marked the file as urgent to make sure that she would have the results.
Yesterday, Mr. T and I met with Dr. D, both of us relaxed with no particular agenda in mind. She had the results and explained that the PET scan showed no areas with hyper-metabolic activity and therefore considered that I was in complete remission. Since it was what I had been expecting all along it took a minute before the reality of what she was telling me sunk in. I looked at Mr. T to see if I could read on his face the same sort of relief that I was feeling, and sure enough, I detected a hint of a smile; I even got a hug when we were out of her office!
She was ready to stop the chemo after the treatment that I was there for yesterday, but I detected that she was in some way hesitant and perhaps trying to do me a favor by explaining that we could always do chemo again if required. When I questioned her decision, she admitted that the protocol calls for two "consolidation cures" at this point in the diagnosis, so I signed up for another session (June 28th) preferring to be safe than sorry. I'm anxious to finish the LAST chemo so I can look forward to having my hair, eyebrows and eyelashes start growing again. It strikes me as funny that in some ways I tend to take for granted the really good news of being in remission and am concentrating on the more vain aspects. I guess I just want to look as normal as I feel.
So we left the oncologist's office and for the first time did not have to meet with the secretary to line up at least ten more appointments. We headed straight for the day hospital, picking up our lunch along the way. We got on the elevator, already crowded by the tea and coffee volunteers from "Les Amis de Bordet", and were joined by an older woman who had obviously just received some bad news. If she were making an effort to control her distress she was not being totally successful as she was on the edge of tears and was muttering softly to herself. I could only try to comfort her a bit by putting my hand on her back and patting her from time to time. Her fear and pain was palpable in the elevator, but perhaps the most difficult aspect for her fellow passengers was her solitude. When we arrived at her floor, a young gentlemen (probably at least second generation Belgian but of obvious Arab descent) offered to accompagne her to her destination and left the elevator with her. It was an incredibly touching moment and one that will unfortunately never be announced on the evening news.
I was really tired last night and slept through my various attempts at home entertainment, but woke up feeling just fine this morning. I'm concentrating on wrapping up some paperwork and making last-minute preparations for Alec and Virginie's upcoming wedding (June 18th) and the arrival of Madelaine, Richard and Élodie (June 16th).
There are SO many good things to look forward to!
Monday, May 30, 2011
Close Call
Two weeks ago today, I last met with my oncologist. The good news is that one of the cancer markers in my blood is now normalized and she is carefully watching the second as it slowly decreases also. The downside is that I'm still anemic and my white blood cell count is also low, which makes me rather lethargic lately. I just don't seem to have much energy to undertake even simple tasks such as sewing or knitting. She has me taking iron supplements in order to prepare me for some EPO (pro bicyclists' drug of preference) to boost my red cells. Looking forward to that!
That same afternoon I had my latest chemo treatment. Amazingly enough, I had really very few side effects this time besides a few days of feeling very tired and slow. No pain, no nausea.
The scary bit happened three weeks ago today, which was the beginning of Week 3 of the previous treatment. I was feeling really slow and had just curled up on the couch with Mr. T that evening for our regular "Home Entertainment" session. What was unusual is that I never tuned into the film and what really should have tipped us off that something was wrong is that I didn't eat any supper when Mr. T ate. When the film was over, I went up to bed and decided to take my temperature -- 38 ºC (100,4 ºF) -- and then I called the hospital and they told to come into the emergency room immediately. I Skyped Mr. T since I thought he might be on his computer downstairs and when I got no response, [apparently I called to him and had a conversation in the stairwell telling him about the fever and what the hospital had said. He then came upstairs, told me to get dressed and pack a bag, which I did, and then he drove me to the emergency room where they checked me in and started doing some tests. Blood sample, urine sample, and then lots of waiting before they found me a room and admitted me to the hospital.] All of the events in brackets is everything that happened to me for which I have NO memory whatsoever! I was in some sort of second state where I was apparently responding to what folks were saying to me but nothing was being transferred from short-term to long-term memory.
The next morning when I woke up in my hospital room I saw my bag and wondered who had packed it. When I looked inside, everything that I needed was there and was logical -- toilet items, bedroom slippers, nightgown, etc. Strange indeed.
The diagnosis was that I had some sort of infection, my white blood cell count was only 450, well below the minimum of 1000, I was anemic, dehydrated and my blood pressure was very low. They put me on a drip which included a broad-spectrum antibiotic until they managed to find out exactly where the infection was and which bacteria was responsible. They never did isolate the culprit but I responded to the treatment and gradually got better over the next few days. They sent me home after three days with a prescription to continue with the antibiotic in question.
I was never in pain, but just incredibly weak and not really firing with all pistons. My spirits were really down around my ankles since this had never happened before and I was quite shook up by my pathetic physical state and my inability to do anything about it except get myself to the hospital which I had managed to do with the help of Mr. T. What would I have done without him? I'd rather not even think about that. Anyway, my saucerful of pills that I take every morning now includes an anti-depressor, for which I am very grateful. I've been feeling much better about things in general and the outlook that I have about the cancer and my treatment seems a lot less "heavy" than before.
This week I have an MRI and a PET scan scheduled, and next Tuesday will be my next meeting with the oncologist followed by a chemo treatment in the afternoon. She will judge based on all of the input whether to continue with more chemo treatments after that or not. (Two more dates have been penciled in, just in case.)
I'll keep you posted as the saga unfolds.
That same afternoon I had my latest chemo treatment. Amazingly enough, I had really very few side effects this time besides a few days of feeling very tired and slow. No pain, no nausea.
The scary bit happened three weeks ago today, which was the beginning of Week 3 of the previous treatment. I was feeling really slow and had just curled up on the couch with Mr. T that evening for our regular "Home Entertainment" session. What was unusual is that I never tuned into the film and what really should have tipped us off that something was wrong is that I didn't eat any supper when Mr. T ate. When the film was over, I went up to bed and decided to take my temperature -- 38 ºC (100,4 ºF) -- and then I called the hospital and they told to come into the emergency room immediately. I Skyped Mr. T since I thought he might be on his computer downstairs and when I got no response, [apparently I called to him and had a conversation in the stairwell telling him about the fever and what the hospital had said. He then came upstairs, told me to get dressed and pack a bag, which I did, and then he drove me to the emergency room where they checked me in and started doing some tests. Blood sample, urine sample, and then lots of waiting before they found me a room and admitted me to the hospital.] All of the events in brackets is everything that happened to me for which I have NO memory whatsoever! I was in some sort of second state where I was apparently responding to what folks were saying to me but nothing was being transferred from short-term to long-term memory.
The next morning when I woke up in my hospital room I saw my bag and wondered who had packed it. When I looked inside, everything that I needed was there and was logical -- toilet items, bedroom slippers, nightgown, etc. Strange indeed.
The diagnosis was that I had some sort of infection, my white blood cell count was only 450, well below the minimum of 1000, I was anemic, dehydrated and my blood pressure was very low. They put me on a drip which included a broad-spectrum antibiotic until they managed to find out exactly where the infection was and which bacteria was responsible. They never did isolate the culprit but I responded to the treatment and gradually got better over the next few days. They sent me home after three days with a prescription to continue with the antibiotic in question.
I was never in pain, but just incredibly weak and not really firing with all pistons. My spirits were really down around my ankles since this had never happened before and I was quite shook up by my pathetic physical state and my inability to do anything about it except get myself to the hospital which I had managed to do with the help of Mr. T. What would I have done without him? I'd rather not even think about that. Anyway, my saucerful of pills that I take every morning now includes an anti-depressor, for which I am very grateful. I've been feeling much better about things in general and the outlook that I have about the cancer and my treatment seems a lot less "heavy" than before.
This week I have an MRI and a PET scan scheduled, and next Tuesday will be my next meeting with the oncologist followed by a chemo treatment in the afternoon. She will judge based on all of the input whether to continue with more chemo treatments after that or not. (Two more dates have been penciled in, just in case.)
I'll keep you posted as the saga unfolds.
Friday, April 15, 2011
There and Back Again
Checking back into the hospital for my chemo session that fateful Monday morning (almost 2 weeks ago) was one of the toughest hurdles that I've encountered so far. Still so weak from the operation, I had to accept that treatment which I knew was going to make me feel like Hammered Dog Shit (refer to previously defined scale, if needed) . And yet, that was what was on my plate.
The next few days were pretty rough -- I felt incredibly tired and as if I had the flu. Unlike previous episodes, my appetite was only at half-mast and I was digging into my fat reserves, having lost 3 kilos (6 lbs.) since I had checked into the hospital. I can only remember just dragging myself from the bed to the couch and back again, with short interludes sitting at the table. I remember telling Mr. T that I felt as if I were vibrating with weakness. Once again I was in the position of just " riding it out", only able to concentrate on my breathing and repeating to myself "Breathing in, I feel alive. Breathing out, I smile at life." Yes, despite feeling so low I could still tap into that "glad to be alive" feeling.
Fortunately the effects of this chemo seemed to subside more quickly than the previous sessions perhaps because of the long reprieve that I had been given before the surgery. I was soon able to take advantage of the most incredible weather that we were having -- sunny, warm days usually characteristic of late May, but making a guest appearance in early April. I could sit outside in my rocking lounge chair and watch Virginie potter about the garden on my behalf. She had started a whole raft of seedlings in the greenhouse while I was in the hospital and these had just burst forth with the warm weather.
I let myself be quickly tempted away from my bland, fiber-free diet whose purpose was to allow my freshly operated colon to gently start back to work. How could I resist fresh mesclun salad with arugula ("roquette') generously seasoned with Virginie's *real* vinaigrette after having eaten dry crackers for a week? A digression on vinaigrette: It is my personal conviction that only True Frogs can make *real* vinaigrette -- that heavy consistency, with the perfect balance between oil and vinegar, and the magical touch of mustard. As a Naturalized Frog, I can attest that simple citizenship alone neither improves your accent nor confers upon you the ability to make vinaigrette.
As my good friend, Jeni, (former nurse and source of invaluable tips on the art of recovery) had warned me, "Bowels are like cats, they can seriously pout if disturbed in their habits." I was now faced with dealing with miffed bowels and a recalcitrant A-Hole who was acting like a groundhog that had seen its shadow and had elected for six more weeks of hibernation. After a particularly exhausting day, I was comforted by Alec who lovingly placed his hand on my shoulder, gazed deep into my eyes and said, "Don't forget, Mom, this poo shall pass."
At the end of every day, I managed to sit up and watch a movie with Mr. T and Virginie, which provided distraction and pushed me closer to a normal bedtime hour. Each time that I managed to sleep all through the night, I was rewarded the next day with a distinct improvement in how I felt. Each day was definitely better than the day before. Yet, I managed to maintain my passive role of watching and letting others do. I realized that I am not the Master of My Universe and that even if I were not in the heat of the action the whole theatre piece of daily life would smoothly unfold with other actors stepping in to fill my role. Alec and Virginie were manning the household tasks of laundry, shopping, cooking and gardening; Mr. T was attending to all administrative tasks, runs to the pharmacy, and, of course, the home entertainment department. I could just sit back, provided I could locate that elusive comfortable position, and concentrate on getting well.
The week was interspersed with several Skype sessions, produced and directed by Madelaine and Richard, starring Mlle Élodie, the World's Most Beautiful Baby Girl. It was hard to say what provided the most balm to my heart: seeing the glow of pure joy on Madelaine & Richard's faces or watching that gorgeous little angel with her eyes wide open already trying to figure out what the hell is going on. Not being there for her birth was a hard pill to swallow, but now I have so much to look forward to: taking her in my arms, sticking my nose in her neck and drinking in that new baby smell, and "getting all of her sugar" (an expression from my Southern background inevitably heard when being smothered with kisses from some mildly perspiring, wrinkly old relative "I'm just gonna get all of yo sugah." ).
Yesterday, Mr. T and I took Alec and Virginie to the train station. They are off on their own adventure right now, with plans to join up with Breck (Alec & Madelaine's dad) for a hiking trip in Corsica. I always have a tiny pinch in my heart whenever I have to say good-bye to Alec, but this time I was reassured knowing that they would be back soon. They've organized a big family celebration at our place in France in June; more details on this to follow.
Mr. T loaded up the car by himself, and I managed to catch our big black cat, Moïse, who had suspected that a trip to the country house was in the air all day long. The two hour trip to Heuchin left us both exhausted, but well worth the effort. I'm so happy to be here and check on my garden and the chickens. The fruit trees are bursting forth, both beehives made it through the winter, and the tulips, the least modest of all flowers, are showing off as they do every year. For the first time in my life, I'm able to sit and simply enjoy my garden, without hopping up to snatch at a weed or dashing off to re-pot a plant that has sprung up in the " wrong" place. Just sit and take it all in. "Be" and not "do".
Your mission, should you decide to accept it: just sit for thirty minutes in your garden or nearby park. Drink in the details, open up all of your senses, and stay away from your mental " to do" list.
Back in the days, Mr. Natural wisely told us that "Shit happens", but what I've learned since is that any unpleasant situation bears some little gem of wisdom if I'm willing to stay open.
The next few days were pretty rough -- I felt incredibly tired and as if I had the flu. Unlike previous episodes, my appetite was only at half-mast and I was digging into my fat reserves, having lost 3 kilos (6 lbs.) since I had checked into the hospital. I can only remember just dragging myself from the bed to the couch and back again, with short interludes sitting at the table. I remember telling Mr. T that I felt as if I were vibrating with weakness. Once again I was in the position of just " riding it out", only able to concentrate on my breathing and repeating to myself "Breathing in, I feel alive. Breathing out, I smile at life." Yes, despite feeling so low I could still tap into that "glad to be alive" feeling.
Fortunately the effects of this chemo seemed to subside more quickly than the previous sessions perhaps because of the long reprieve that I had been given before the surgery. I was soon able to take advantage of the most incredible weather that we were having -- sunny, warm days usually characteristic of late May, but making a guest appearance in early April. I could sit outside in my rocking lounge chair and watch Virginie potter about the garden on my behalf. She had started a whole raft of seedlings in the greenhouse while I was in the hospital and these had just burst forth with the warm weather.
I let myself be quickly tempted away from my bland, fiber-free diet whose purpose was to allow my freshly operated colon to gently start back to work. How could I resist fresh mesclun salad with arugula ("roquette') generously seasoned with Virginie's *real* vinaigrette after having eaten dry crackers for a week? A digression on vinaigrette: It is my personal conviction that only True Frogs can make *real* vinaigrette -- that heavy consistency, with the perfect balance between oil and vinegar, and the magical touch of mustard. As a Naturalized Frog, I can attest that simple citizenship alone neither improves your accent nor confers upon you the ability to make vinaigrette.
As my good friend, Jeni, (former nurse and source of invaluable tips on the art of recovery) had warned me, "Bowels are like cats, they can seriously pout if disturbed in their habits." I was now faced with dealing with miffed bowels and a recalcitrant A-Hole who was acting like a groundhog that had seen its shadow and had elected for six more weeks of hibernation. After a particularly exhausting day, I was comforted by Alec who lovingly placed his hand on my shoulder, gazed deep into my eyes and said, "Don't forget, Mom, this poo shall pass."
At the end of every day, I managed to sit up and watch a movie with Mr. T and Virginie, which provided distraction and pushed me closer to a normal bedtime hour. Each time that I managed to sleep all through the night, I was rewarded the next day with a distinct improvement in how I felt. Each day was definitely better than the day before. Yet, I managed to maintain my passive role of watching and letting others do. I realized that I am not the Master of My Universe and that even if I were not in the heat of the action the whole theatre piece of daily life would smoothly unfold with other actors stepping in to fill my role. Alec and Virginie were manning the household tasks of laundry, shopping, cooking and gardening; Mr. T was attending to all administrative tasks, runs to the pharmacy, and, of course, the home entertainment department. I could just sit back, provided I could locate that elusive comfortable position, and concentrate on getting well.
The week was interspersed with several Skype sessions, produced and directed by Madelaine and Richard, starring Mlle Élodie, the World's Most Beautiful Baby Girl. It was hard to say what provided the most balm to my heart: seeing the glow of pure joy on Madelaine & Richard's faces or watching that gorgeous little angel with her eyes wide open already trying to figure out what the hell is going on. Not being there for her birth was a hard pill to swallow, but now I have so much to look forward to: taking her in my arms, sticking my nose in her neck and drinking in that new baby smell, and "getting all of her sugar" (an expression from my Southern background inevitably heard when being smothered with kisses from some mildly perspiring, wrinkly old relative "I'm just gonna get all of yo sugah." ).
Yesterday, Mr. T and I took Alec and Virginie to the train station. They are off on their own adventure right now, with plans to join up with Breck (Alec & Madelaine's dad) for a hiking trip in Corsica. I always have a tiny pinch in my heart whenever I have to say good-bye to Alec, but this time I was reassured knowing that they would be back soon. They've organized a big family celebration at our place in France in June; more details on this to follow.
Mr. T loaded up the car by himself, and I managed to catch our big black cat, Moïse, who had suspected that a trip to the country house was in the air all day long. The two hour trip to Heuchin left us both exhausted, but well worth the effort. I'm so happy to be here and check on my garden and the chickens. The fruit trees are bursting forth, both beehives made it through the winter, and the tulips, the least modest of all flowers, are showing off as they do every year. For the first time in my life, I'm able to sit and simply enjoy my garden, without hopping up to snatch at a weed or dashing off to re-pot a plant that has sprung up in the " wrong" place. Just sit and take it all in. "Be" and not "do".
Your mission, should you decide to accept it: just sit for thirty minutes in your garden or nearby park. Drink in the details, open up all of your senses, and stay away from your mental " to do" list.
Back in the days, Mr. Natural wisely told us that "Shit happens", but what I've learned since is that any unpleasant situation bears some little gem of wisdom if I'm willing to stay open.
Monday, April 4, 2011
I'm Back! and Almost Ready to Party
Several days before I checked into the hospital, I spent time trying to tie up all of my loose ends -- paperwork, watering my plants, organizing my suitcase, etc. All of this done with an underlying sense of anxiety and apprehension -- need to get this done before since I don't know how I'm going to feel afterwards.
I even went so far as to sign a paper stating that I didn't want unnecessary medical assistance in case of irreversible problems, along the lines of "I'd rather be unplugged than an eggplant, thanks", and I even indicated that Mr. T should have the right to decide. He promised that if I were in a coma he would come to visit everyday and talk to me all day long about such enthralling topics as: geopolitics in general; the history of Belgium from its inception up to today's linguistic/community problems, with digression on its former colonial period; the history of socialism from the October revolution to its impact on the current economic situation and proposals for future improvements; the history of Citroën's "Traction Avant", enumerating all of the various models and emphasizing its role in the modernisation of the European automobile industry; an unexpurgated version of the Jewish diaspora up to and including the current Israeli/Palestinian conflict; background on the establishment of various norms and standards, including but not limited to European license plates, the American highway system (both local and interstate), international bank account number formats, the Belgian MIG (not airplanes but the electricity grid interface between suppliers and distributors); comparison of former and current audiovisual standards and their level of adoption (European vs. American) with special focus on terrestrial TV; ... We decided that this would provide me with an excellent incentive to emerge from my coma, probably with the firm intention of trying to kill him with the first available blunt object that I could get my hands on.
Sunday morning, the day that I was to check into the hospital, I awoke with an almost eerie feeling of calm and reassurance. The waiting was over, the day had come. That afternoon and the next day were dedicated to the pre-surgery Big Spring Cleaning (inside and out); drinking three litres of epsom salts was a real challenge!
Buoyed by the wisdom of Pema Chödrön (Comfortable with Uncertainty):
Early Tuesday morning, the hustle and bustle began, and before I knew it I was whisked away to the operating room where I participated in my peridural before they put me completely under. Coming to the surface many hours later, I tried to evaluate exactly what condition I was in, but it was just impossible, something akin to having been backed over by a garbage truck. All of this evaluation took place very gradually. Ah, there's something in my nose. Oh, I've got a drip in my wrist and arm. Hmm, what's this thing in my neck? About all that I really remember is that at some point I pried my eyes open enough to realize that Mr. T and Alec had come to check on me. What an incredible relief washed over me when Alec immediately announced that the old, burnt out toaster at home had been replaced with a brand spanking new one! Meanwhile, Mr. T was crawling around under the bed trying to reorganize my various tubes and wires, photographing the entire set-up. This gave me an idea for a future project: writing a handbook on "How To Survive and Even Be Happy Living with an Engineer."
The next few days in intensive care could best be described as -- intense. The anesthetist came and held my hand and told me that I was going to have about three pretty rough days but that each day would get better. I accepted what he said and from that point on, I just clambered into the psychological dinghy that would just let me ride it out. I realized that I was pretty comfortable simply lying flat on my back totally relaxed and so that's what I did, drifting in and out thinking "Oh, I was asleep for a while this time", checking the clock to see that only seven minutes had gone by. "Oh well, at least that's seven minutes in the right direction."
One of the major activities in the ICU is the morning toilet, when the nurse comes to bath me, put lotion on my back, check the dressings, and change the bed. The first day was wonderful. The second day, she called the physical therapist to help put me into the chair while she changed the bed. These folks must be NUTS! Don't they realize how weak I am after that incredible operation? And the next day instead of staying in the chair for only thirty minutes, they left me there for forty-five. I'm convinced that physical therapists are a particular sub-category of sadists, yet another idea for future research.
My progress was best revealed to me by my faithful visitors who were better able to see the day to day changes. By Friday, Alec commented that I had finally managed to open two eyes at the same time and I didn't have that sort of desperate "Your life or a cup of coffee!" expression on my face. Sure enough, by the next day they had bundled me up to take me back to my regular room. I thought that they were crazy, but had no choice but to haul myself onto my regular bed to be trundled back to my room.
At that point, my main preoccupation was to have a real drink of water, which meant that the gastric tube HAD to go. Apparently, the only pre-requisite for that was: to fart. So every morning when the surgeon made her rounds, she asked how it was going and whether or not I had passed gas. Never before had I been so attentive to my stomach rumblings. When the much-awaited event arrived, at 4 o'clock in the morning, the idea actually crossed my mind to give her a call on her portable phone. I managed to hold myself back until her visit the next morning. When she gave the OK to remove that instrument of torture I made a great leap forward being able to move about more freely and above all to drink again!
After a few days on the ward, I was just exhausted with all of the comings and goings of the staff coupled with the fact that I was not really have a good night's sleep. While the nurse-in-training and her supervisor were removing one of my abdominal drains and mobilizing the other one, the physical therapist -- among others -- came by three times. That's when it became just Too Much and I really had my own emotional Fukushima -- central nervous reactor meltdown resulting in radioactive vibrations being spewed into the atmosphere -- bawling my eyes out and emphasizing that I just couldn't take it anymore.
Once the bandaging was finished, they brought me my lunch and Mr. T arrived sitting down to eat his sandwich with me. Knock, knock -- the physical therapist reappears! BOOM! "Ce n'est pas possible! It's Grand Central Station around here! I never have three minutes before someone knocks on the damned door. Merde, je n'en peux plus -- je rentre à la maison si ça continue!" To which he replied, "Would you like me to put a note on your door, requesting that you not be disturbed?" "Oh, yes, please do!" I managed to sleep the rest of the afternoon with only an occasional nurse tiptoeing in almost apologetically.
The next day the surgeon, came by to explain that they wanted to keep me over the weekend and give me my first chemo on Monday. "Why would you want to keep me here? Is there some medical reason?", I ask. " No, simply so that you can rest.", she replies, to which I reach for my mobile phone and read out the notes that I had made only that morning.
I raised my eyes and looked at her, and she told me that she would see what she could do about getting me out for the weekend. The result was that they decided to give me three units of blood since I was so anemic, to leave in one of my drains, to keep my room for me in case I needed to come by for some unexpected reason, and then to send me home for the weekend. My next chemo was planned for the following Monday morning and I was to simply show back up in my room at 8:00.
I informed Alec and Virginie that the Great Escape was on for the following day and that they were in charge of loading the ropes and hooks into their backpacks, since I was determined to go "over the wall" in case the medical staff had changed its mind. But all went uneventfully well and after my transfusion I was allowed to simply walk out with a plastic sac full of medication and hearty "See you on Monday, Mme Morgan! Bon weekend!".
Being at home was such a treat! Moïse and Aïchat were glad to see me and let me know in their respective ways -- kitty-therapy. The garden was literally bursting forth and I was able to admire all of the fine work that Philou had done (whitewashing the walls and putting up the mural tiles that we had brought back from Istanbul last year) and all of the seedlings that Virginie had started either in the house or in the greenhouse. At my request, Viriginie had made chicken noodle soup, with tiny bits of carrots and celery, for supper. I had been pushing "food" around my plate for the last few days at the hospital, but when I set down in front of that bowl of soup, my appetite instantly rushed back. There's a huge difference between keeping someone alive with food and nourishing them: the essential ingredient of the latter being love.
Perhaps the best part of this adventure came when I saw the faces of the two surgeons when they came to visit me in the ICU -- they were both apparently *very* satisfied with the results after working in tandem for ten hours. Dr. Veys assured me that they had meticulously eradicated every site within the abdominal cavity. Apparently there had been a true " Grey's Anatomy" moment when she hesitated about whether or not to attempt removal of the ganglion on the back of the vena cava, the largest blood vessel in the body. But her colleague, Dr. Liberale, always up for a challenge (and probably an extra shot of adrenaline), said " We can get that; I can get that.", and he did. So although I'm not cancer free (thus the chemo session today), I am rid of the bulk of the problem.
I came away from the hospital with two powerful realizations. The first is that I am truly loved in this world by my family and friends; I never stopped being amazed by the support that just kept coming in to buoy me up and carry me through this. The second is that I have a deep conviction that I'm really going to beat this thing. Not just a puny " total remission for now but it will crop up again one day" but something more along the lines of "Mme Morgan, we can't explain this, but there is just no more trace of any cancer any where in your body".
Am I just telling myself porky-pies or is there really something to this feeling?
Only time will tell, and in the meantime, I'll keep you posted.
P.S. The new toaster is great!
I even went so far as to sign a paper stating that I didn't want unnecessary medical assistance in case of irreversible problems, along the lines of "I'd rather be unplugged than an eggplant, thanks", and I even indicated that Mr. T should have the right to decide. He promised that if I were in a coma he would come to visit everyday and talk to me all day long about such enthralling topics as: geopolitics in general; the history of Belgium from its inception up to today's linguistic/community problems, with digression on its former colonial period; the history of socialism from the October revolution to its impact on the current economic situation and proposals for future improvements; the history of Citroën's "Traction Avant", enumerating all of the various models and emphasizing its role in the modernisation of the European automobile industry; an unexpurgated version of the Jewish diaspora up to and including the current Israeli/Palestinian conflict; background on the establishment of various norms and standards, including but not limited to European license plates, the American highway system (both local and interstate), international bank account number formats, the Belgian MIG (not airplanes but the electricity grid interface between suppliers and distributors); comparison of former and current audiovisual standards and their level of adoption (European vs. American) with special focus on terrestrial TV; ... We decided that this would provide me with an excellent incentive to emerge from my coma, probably with the firm intention of trying to kill him with the first available blunt object that I could get my hands on.
Sunday morning, the day that I was to check into the hospital, I awoke with an almost eerie feeling of calm and reassurance. The waiting was over, the day had come. That afternoon and the next day were dedicated to the pre-surgery Big Spring Cleaning (inside and out); drinking three litres of epsom salts was a real challenge!
Buoyed by the wisdom of Pema Chödrön (Comfortable with Uncertainty):
We realize that connecting with our experience by meeting it feels better than resisting it by moving away. As we practice moving into the present moment this way, we become more familiar with groundlessness. A fresh state of being that is available to us on an ongoing basis. This moving away from comfort and security, this stepping out into what is unknown, uncharted, and shaky -- that's called liberation.and Alec's parting words: "Remember, Mom, don't go towards the Light -- let them know that you haven't finished knitting my socks yet.", I slept well.
Early Tuesday morning, the hustle and bustle began, and before I knew it I was whisked away to the operating room where I participated in my peridural before they put me completely under. Coming to the surface many hours later, I tried to evaluate exactly what condition I was in, but it was just impossible, something akin to having been backed over by a garbage truck. All of this evaluation took place very gradually. Ah, there's something in my nose. Oh, I've got a drip in my wrist and arm. Hmm, what's this thing in my neck? About all that I really remember is that at some point I pried my eyes open enough to realize that Mr. T and Alec had come to check on me. What an incredible relief washed over me when Alec immediately announced that the old, burnt out toaster at home had been replaced with a brand spanking new one! Meanwhile, Mr. T was crawling around under the bed trying to reorganize my various tubes and wires, photographing the entire set-up. This gave me an idea for a future project: writing a handbook on "How To Survive and Even Be Happy Living with an Engineer."
The next few days in intensive care could best be described as -- intense. The anesthetist came and held my hand and told me that I was going to have about three pretty rough days but that each day would get better. I accepted what he said and from that point on, I just clambered into the psychological dinghy that would just let me ride it out. I realized that I was pretty comfortable simply lying flat on my back totally relaxed and so that's what I did, drifting in and out thinking "Oh, I was asleep for a while this time", checking the clock to see that only seven minutes had gone by. "Oh well, at least that's seven minutes in the right direction."
One of the major activities in the ICU is the morning toilet, when the nurse comes to bath me, put lotion on my back, check the dressings, and change the bed. The first day was wonderful. The second day, she called the physical therapist to help put me into the chair while she changed the bed. These folks must be NUTS! Don't they realize how weak I am after that incredible operation? And the next day instead of staying in the chair for only thirty minutes, they left me there for forty-five. I'm convinced that physical therapists are a particular sub-category of sadists, yet another idea for future research.
My progress was best revealed to me by my faithful visitors who were better able to see the day to day changes. By Friday, Alec commented that I had finally managed to open two eyes at the same time and I didn't have that sort of desperate "Your life or a cup of coffee!" expression on my face. Sure enough, by the next day they had bundled me up to take me back to my regular room. I thought that they were crazy, but had no choice but to haul myself onto my regular bed to be trundled back to my room.
At that point, my main preoccupation was to have a real drink of water, which meant that the gastric tube HAD to go. Apparently, the only pre-requisite for that was: to fart. So every morning when the surgeon made her rounds, she asked how it was going and whether or not I had passed gas. Never before had I been so attentive to my stomach rumblings. When the much-awaited event arrived, at 4 o'clock in the morning, the idea actually crossed my mind to give her a call on her portable phone. I managed to hold myself back until her visit the next morning. When she gave the OK to remove that instrument of torture I made a great leap forward being able to move about more freely and above all to drink again!
After a few days on the ward, I was just exhausted with all of the comings and goings of the staff coupled with the fact that I was not really have a good night's sleep. While the nurse-in-training and her supervisor were removing one of my abdominal drains and mobilizing the other one, the physical therapist -- among others -- came by three times. That's when it became just Too Much and I really had my own emotional Fukushima -- central nervous reactor meltdown resulting in radioactive vibrations being spewed into the atmosphere -- bawling my eyes out and emphasizing that I just couldn't take it anymore.
Once the bandaging was finished, they brought me my lunch and Mr. T arrived sitting down to eat his sandwich with me. Knock, knock -- the physical therapist reappears! BOOM! "Ce n'est pas possible! It's Grand Central Station around here! I never have three minutes before someone knocks on the damned door. Merde, je n'en peux plus -- je rentre à la maison si ça continue!" To which he replied, "Would you like me to put a note on your door, requesting that you not be disturbed?" "Oh, yes, please do!" I managed to sleep the rest of the afternoon with only an occasional nurse tiptoeing in almost apologetically.
The next day the surgeon, came by to explain that they wanted to keep me over the weekend and give me my first chemo on Monday. "Why would you want to keep me here? Is there some medical reason?", I ask. " No, simply so that you can rest.", she replies, to which I reach for my mobile phone and read out the notes that I had made only that morning.
- 5:35 night nurse empties drain pouches
- 6:58 cleaning lady empties trash can
- 7:03 nurse delivers clean sheets
- 7:13 assistant nurse delivers morning pills
- 7:13 nurse arrives to announce that I'm about to have blood drawn
- 7:15 assistant nurse comes back with another pill she had forgotten, 2 more nurses change the bed while the 3rd nurse draws the blood and a fourth delivers my breakfast tray -- I count 5 people in the room besides myself
- 7:27 assistant nurse come to check my vital signs -- temperature, blood pressure, oxygen level and insulin levels in the blood
- 7:29 assistant nurse drops off towels and washcloth
- 7:33 I bathe myself and put on a clean gown
- 7:47 cleaning lady returns to clean the room
- 8:12 surgeon's visit
- 8:54 psychologist's visit
- 9:18 special "well-being" nurse come to set up an appt. for pedicure (!)
- 9:25 someone picks up the breakfast tray
- 9:46 nurse arrives to change my dressings
- 11:10 someone drops off the lunch tray
I raised my eyes and looked at her, and she told me that she would see what she could do about getting me out for the weekend. The result was that they decided to give me three units of blood since I was so anemic, to leave in one of my drains, to keep my room for me in case I needed to come by for some unexpected reason, and then to send me home for the weekend. My next chemo was planned for the following Monday morning and I was to simply show back up in my room at 8:00.
I informed Alec and Virginie that the Great Escape was on for the following day and that they were in charge of loading the ropes and hooks into their backpacks, since I was determined to go "over the wall" in case the medical staff had changed its mind. But all went uneventfully well and after my transfusion I was allowed to simply walk out with a plastic sac full of medication and hearty "See you on Monday, Mme Morgan! Bon weekend!".
Being at home was such a treat! Moïse and Aïchat were glad to see me and let me know in their respective ways -- kitty-therapy. The garden was literally bursting forth and I was able to admire all of the fine work that Philou had done (whitewashing the walls and putting up the mural tiles that we had brought back from Istanbul last year) and all of the seedlings that Virginie had started either in the house or in the greenhouse. At my request, Viriginie had made chicken noodle soup, with tiny bits of carrots and celery, for supper. I had been pushing "food" around my plate for the last few days at the hospital, but when I set down in front of that bowl of soup, my appetite instantly rushed back. There's a huge difference between keeping someone alive with food and nourishing them: the essential ingredient of the latter being love.
Perhaps the best part of this adventure came when I saw the faces of the two surgeons when they came to visit me in the ICU -- they were both apparently *very* satisfied with the results after working in tandem for ten hours. Dr. Veys assured me that they had meticulously eradicated every site within the abdominal cavity. Apparently there had been a true " Grey's Anatomy" moment when she hesitated about whether or not to attempt removal of the ganglion on the back of the vena cava, the largest blood vessel in the body. But her colleague, Dr. Liberale, always up for a challenge (and probably an extra shot of adrenaline), said " We can get that; I can get that.", and he did. So although I'm not cancer free (thus the chemo session today), I am rid of the bulk of the problem.
I came away from the hospital with two powerful realizations. The first is that I am truly loved in this world by my family and friends; I never stopped being amazed by the support that just kept coming in to buoy me up and carry me through this. The second is that I have a deep conviction that I'm really going to beat this thing. Not just a puny " total remission for now but it will crop up again one day" but something more along the lines of "Mme Morgan, we can't explain this, but there is just no more trace of any cancer any where in your body".
Am I just telling myself porky-pies or is there really something to this feeling?
Only time will tell, and in the meantime, I'll keep you posted.
P.S. The new toaster is great!
Saturday, March 19, 2011
Get Ready, Get Set, ...
So many good things have been happening lately that it's hard to keep up.
Only one week ago we returned from a quick trip to Tunisia, planned to take advantage of the extra week reprieve that I was given between the last chemo and the upcoming surgery. We flew to Djerba, only 3 hours from Brussels, where we indulged in a fine hotel with spa. I was able to go swimming everyday in the heated, indoor pool, which was an incredible treat for me -- I love to swim! We rented a car to explore several Berber villages about 150 km. inland from Djerba. It reminded me of pictures from my Sunday School books, vast expanses with tiny green wheat fields terraced along the mountainside, an olive oil press just inside a troglodyte dwelling driven by a blindfolded camel, dark-skinned men draped in even darker burnouses.
The best part of the trip, besides the incredible food and the occasional massage, was the fact that I realized that given enough time after the chemo, I began to feel like my old self again. I had enough strength to swim, bike, walk and climb, feeling a bit stronger everyday.
The Monday after our return I spent the entire day at the hospital for pre-op exams, PET scan, chest X-ray, blood tests, etc. Tedious, uneventful and boring.
I was so exhausted by the end of the day, but this was all forgotten as soon as I got a call from Breck who informed me that Madelaine had just had a baby girl, weighing 7 lbs and 10 oz. Immediately following his call, I received several emails laden with pictures from Rebekah, Madelaine's auntie. What joy to see how healthy and plump she is, and to see how Madelaine and Richard both were simply radiating with happiness. The next few days they spent in the hospital with her getting to know her and trying out names. Apparently she likes Élodie, et voilà!
The next day, Mr T and I met with the oncologist who gave us the good news from the PET scan: the activity of the cancer cells continues to diminish as a result of the chemo, and therefore removing the bulk of the tumors in the abdomen would be a real benefit for the long term. At last, we received the official confirmation that the surgery will go ahead next Tuesday. This was confirmed the next day when we met with the surgeon who filled in the details of what the surgeons would be doing. I was so relieved to know that Dr. D2, my immunologist, would be receiving the cancer cell samples that he needs to build a vaccine for me.
All of my life I've seen "the doctor" as the ultimate authority concerning my health and usually just went along with what was prescribed. Now I find myself in a situation where I'm coordinating the interaction of various specialists, each of whom have their particular perspective and area of expertise. They may be willing to acknowledge the benefits of the other approaches but won't cross the line of their own competence. When speaking of the immunotherapy, the oncologist only gave the approving nod of the head when I said "You can't win the lottery if you don't buy a ticket." Once again, I'm reminded that it's my disease and that I have to discover and organize the best treatment options possible.
Tuesday evening Alec and Virginie arrived, fresh off their last WWOOFing stint in the south of France, to give us moral support and a helping hand around here during and after the surgery. Leaving Mr. T behind to tend to professional commitments, the three of us headed to Heuchin for a few days. Although the weather was still a bit chilly, I bundled up and took a tour of the garden where spring has definitely sprung -- narcissus, forsythia, and primulas in full bloom, fruit trees and bushes laden with promising buds, mother hen initiating her one little chick in the chicken scratch dance, a few bees making occasional, cautious sorties, birds in full concert.
Virginie headed for the vegetable patch to harvest some fat, resilient leeks to include in her "potée" of mixed greens and bacon. For desert, she treated us to flan made with home-grown eggs and raw milk that Alec had fetched from the neighboring farm earlier.
The next day we set up a factory-line to get my new beehives in shape for the upcoming season. I decided to paint only one of the two new hives that I had bought in February, so as not to wear myself out completely. The big task was to wire up the new frames and attach the wax sheets to the wires. Alec put together a clever device for heating up the wires using a transformer plugged into a push button control (default position alway off for security). We just needed to touch the two live wires to the frame wires and after 5 seconds the wax would melt just enough to surround the wire. When cooled, the wax was solidly fixed to the support wires. This technique worked so well and was so efficient that not only did we kit out the frames for the new hive, but we redid the frames for the uppers that I had done last year. I hope to use these uppers this summer for my first honey harvest. Last year, I did all of the frame preparation by myself so I was just amazed at how much work the three of us were able to get done working together.
We headed back to Brussels yesterday in time to rest up and then go to the movies with Mr. T. We all wanted to see "True Grit" which was a fantastic "get away from it all" experience as well as an excellent lesson in determination. Mr. T took us to the local brasserie where we ran across Nicole who then joined us.
In the background I feel like I'm running a long checklist and I can feel the clock running. What do I really need to get done before I go into the hospital? The anxiety of "will they operate or not" has now been replaced by the anxiety of "they ARE going to operate". It's a strange situation in that I'm so relieved that the surgery is really going to happen and yet I'm apprehensive about the process, the pain, and how long it will take for me to get better. It's so hard not knowing exactly how it's going to be afterwards.
I had such a touching moment when I locked the front door to my house in Heuchin because for the first time ever I couldn't know when I would be able to come back again. How long will it take before I can stand to ride at least 2 hours in a car, not to mention a trans-Atlantic flight? Sounds like science fiction for now. Let's be more realistic. Will I be able to walk down a flight of stairs by myself? What about just getting into the shower? For now, I just have to get on and ride the ride, and let go of the outcome.
Letting go seems to be one of my lessons in this experience. Very tall order for a control freak.
Only one week ago we returned from a quick trip to Tunisia, planned to take advantage of the extra week reprieve that I was given between the last chemo and the upcoming surgery. We flew to Djerba, only 3 hours from Brussels, where we indulged in a fine hotel with spa. I was able to go swimming everyday in the heated, indoor pool, which was an incredible treat for me -- I love to swim! We rented a car to explore several Berber villages about 150 km. inland from Djerba. It reminded me of pictures from my Sunday School books, vast expanses with tiny green wheat fields terraced along the mountainside, an olive oil press just inside a troglodyte dwelling driven by a blindfolded camel, dark-skinned men draped in even darker burnouses.
The best part of the trip, besides the incredible food and the occasional massage, was the fact that I realized that given enough time after the chemo, I began to feel like my old self again. I had enough strength to swim, bike, walk and climb, feeling a bit stronger everyday.
The Monday after our return I spent the entire day at the hospital for pre-op exams, PET scan, chest X-ray, blood tests, etc. Tedious, uneventful and boring.
I was so exhausted by the end of the day, but this was all forgotten as soon as I got a call from Breck who informed me that Madelaine had just had a baby girl, weighing 7 lbs and 10 oz. Immediately following his call, I received several emails laden with pictures from Rebekah, Madelaine's auntie. What joy to see how healthy and plump she is, and to see how Madelaine and Richard both were simply radiating with happiness. The next few days they spent in the hospital with her getting to know her and trying out names. Apparently she likes Élodie, et voilà!
The next day, Mr T and I met with the oncologist who gave us the good news from the PET scan: the activity of the cancer cells continues to diminish as a result of the chemo, and therefore removing the bulk of the tumors in the abdomen would be a real benefit for the long term. At last, we received the official confirmation that the surgery will go ahead next Tuesday. This was confirmed the next day when we met with the surgeon who filled in the details of what the surgeons would be doing. I was so relieved to know that Dr. D2, my immunologist, would be receiving the cancer cell samples that he needs to build a vaccine for me.
All of my life I've seen "the doctor" as the ultimate authority concerning my health and usually just went along with what was prescribed. Now I find myself in a situation where I'm coordinating the interaction of various specialists, each of whom have their particular perspective and area of expertise. They may be willing to acknowledge the benefits of the other approaches but won't cross the line of their own competence. When speaking of the immunotherapy, the oncologist only gave the approving nod of the head when I said "You can't win the lottery if you don't buy a ticket." Once again, I'm reminded that it's my disease and that I have to discover and organize the best treatment options possible.
Tuesday evening Alec and Virginie arrived, fresh off their last WWOOFing stint in the south of France, to give us moral support and a helping hand around here during and after the surgery. Leaving Mr. T behind to tend to professional commitments, the three of us headed to Heuchin for a few days. Although the weather was still a bit chilly, I bundled up and took a tour of the garden where spring has definitely sprung -- narcissus, forsythia, and primulas in full bloom, fruit trees and bushes laden with promising buds, mother hen initiating her one little chick in the chicken scratch dance, a few bees making occasional, cautious sorties, birds in full concert.
Virginie headed for the vegetable patch to harvest some fat, resilient leeks to include in her "potée" of mixed greens and bacon. For desert, she treated us to flan made with home-grown eggs and raw milk that Alec had fetched from the neighboring farm earlier.
The next day we set up a factory-line to get my new beehives in shape for the upcoming season. I decided to paint only one of the two new hives that I had bought in February, so as not to wear myself out completely. The big task was to wire up the new frames and attach the wax sheets to the wires. Alec put together a clever device for heating up the wires using a transformer plugged into a push button control (default position alway off for security). We just needed to touch the two live wires to the frame wires and after 5 seconds the wax would melt just enough to surround the wire. When cooled, the wax was solidly fixed to the support wires. This technique worked so well and was so efficient that not only did we kit out the frames for the new hive, but we redid the frames for the uppers that I had done last year. I hope to use these uppers this summer for my first honey harvest. Last year, I did all of the frame preparation by myself so I was just amazed at how much work the three of us were able to get done working together.
We headed back to Brussels yesterday in time to rest up and then go to the movies with Mr. T. We all wanted to see "True Grit" which was a fantastic "get away from it all" experience as well as an excellent lesson in determination. Mr. T took us to the local brasserie where we ran across Nicole who then joined us.
In the background I feel like I'm running a long checklist and I can feel the clock running. What do I really need to get done before I go into the hospital? The anxiety of "will they operate or not" has now been replaced by the anxiety of "they ARE going to operate". It's a strange situation in that I'm so relieved that the surgery is really going to happen and yet I'm apprehensive about the process, the pain, and how long it will take for me to get better. It's so hard not knowing exactly how it's going to be afterwards.
I had such a touching moment when I locked the front door to my house in Heuchin because for the first time ever I couldn't know when I would be able to come back again. How long will it take before I can stand to ride at least 2 hours in a car, not to mention a trans-Atlantic flight? Sounds like science fiction for now. Let's be more realistic. Will I be able to walk down a flight of stairs by myself? What about just getting into the shower? For now, I just have to get on and ride the ride, and let go of the outcome.
Letting go seems to be one of my lessons in this experience. Very tall order for a control freak.
Thursday, February 24, 2011
Standing on the Outside
It's been a week today since my last chemo session and this morning is the first morning that I've awakened feeling that today could be a "normal" day. The chemo is apparently effective at attacking the cancer cells, but the side-effects (nagging pain, numbing fatigue, relentlessly pounding heart) are incredibly efficient at wearing away any sort of psychological façade that I have managed to create. The façade that says '' you can beat this", "you have to be strong and above all, positive", "you're doing all the right things". All notions of being who I'd like to be - kind, patient, polite, understanding -- suffer from the abrasion of the pain and tiredness. I'm left feelling incredibly vulnerable, fragile, lonely and scared.
Although I see that life goes on for those around me -- preparing for a birthday party, a retirement cocktail or a new baby on its way, dealing with a relative who is ill, worrying about problems at work, grieving over the loss of the family pet -- I find it difficult to stay connected. I feel as if I'm standing on the bank and watching the river of life flow by for others, but somehow I'm only an observer. I'm in my own world and I have to struggle to remember to ask those friends who call about what's going on for them, struggle to remember that it's not all just about me, struggle to stay in the stream of life.
I have to constantly remind myself that those around me don't know and can't really know what's it's like for me. They are living the "friend/husband/daughter/son of a cancer victim" role. For this particular play, I'm the only one who has the starring role. I must remind myself that everyone around me is doing the best they can. The reactions of friends and family are incredibly varied -- those that have come out of the blue to be supportive, giving an occasional call, inviting us over for supper, and those that avoid calling at all (for fear of "bothering" me, or just fear alone). For those that can't be there for me, I must realize that this is part of their story and I don't have the right to judge them. For those that do step up to be there for me,for those that I can call and be honest about what's going on for me even on a bad day, I'm incredibly grateful. I feel buoyed by their love and support.
Mr. T and I made a special appointment with the surgeon this week to get some clarification on why she may be hesitating about whether to operate or not. I told her that I wanted her to be honest and she proceeded to explain that heavy surgery (we're talking 10 hours on the operating table, 4 days post-op in intensive care, and 10 days total of hospitalization) is not always recommended for ovarian cancer that has metastasized outside of the abdominal cavity. In other words, I would suffer from the negative effects of the surgery and the result would be that I would still have cancer. Having accepted that, I let her know that it was important for me to get rid of the bulk of the tumors - I want that stuff OUT! - and that I was counting on the "mopping up" phase to take care of the remaining sites all of which are very small (< 1 cm.).
The mopping up would include more chemo, as well as other approaches, including a customized vaccine developped from my cancer cells removed during the surgery. The immunologist that we consulted has done this for several of his patients based on protocols used currently in the States for colorectal and lung cancers. He essentially extracts the signature proteins of the cancer cells and presents them to my immune system. I think of them as "Wanted, Dead or Alive" posters that the lymphocytes will carry around, allowing them to home in on what's left of the cancer and erradicate it.
By the time we walked out of her office, we both were reassured that she does indeed plan to go through with the surgery, and that providing the cancer cells for the vaccine was absolutely not a problem for her. This made me feel back on track, that we had an aggressive plan of action, and that I could improve my chances of survival.
At the same time, I'm faced with the stark reality that despite all of my determination to beat this, all of my efforts to explore possibitilies of treatment, all of my "staying on top of it" psychologically by dealing with my feelings and not stuffing them, all of this just might not be enough. We all know that we all have to go sometime, but I have never been personally faced with the possibility that "sometime" for me might not be thirty or forty years down the road. No wonder that the fear of the "D" word wells up in me from time to time, like a wave of nausea.
Fortunately, one of my most power tools in my get-well box is Charlotte-therapy. Spending time with her and seeing life from her 5 and 1/2 year old point of view, ties me tightly down to the here and now, to living in the moment. There are still tons of things that we can do together despite the fact that I'm too tired to run races -- reading her favorite Schtroumphs (Smurf)s stories, watching "big DVDs" (video cassettes), playing pretend games with the stuffed animals. Yesterday we made peanut butter cookies together, and since she wants to do it all herself and is very reasonable about following instructions, she mixed the batter with the electric mixer with just a little supervision from me. Of course, I had to negotiate to make sure that there was some batter left to actually put in the oven, but we came to an agreement.
During the going to bed routine last night, she and I were piled up in the bed with our herbal tea, having just finished "Schtroumphs-Les-Bains". She reached over and pulled my bonnet down over my eyes and giggled, and then very seriously suggested "Mamie Lee, while waiting for your hair to grow back, you could wear a wig". I told her that I would give it a try.
Tuesday, February 15, 2011
Bee-ware!
What a real treat last week! I spent three days attending a conference on bee pathologies, covering everything from varroa (a mite) to viruses, bacteria, fungi, and even other insects. Fascinating stuff! From nine to five every day I was back in class, taking notes and asking questions – it reminded me so much of my college days in biology, especially in parasitology class. The lecturer was J-P Faucon, Director of the Laboratoire des Pathologies des Abeilles, one of the leading research centers in Europe in this domain. The conference was held at the Lycée Agroenvironmentale near Arras, France so I stayed at our place in Heuchin and drove back and forth every day.
One of the most enjoyable aspects of the conference was meeting other bee nuts. The average participant was in their 50’s, male, and either amateur or semi-professional. The typical opening conversation was along the lines of “Where are you from? How many hives do you have?” The most experienced beekeepers were so open about sharing their know-how with beginners like me. One of the highlights of the day was eating together in the school cafeteria, a culinary experience in France compared to what I remember from my high school days.
I had signed up for the conference in January with no idea at the time of where I would be in my treatment cycle. However, I figured that if I registered, I could always cancel, whereas if I didn’t register I couldn’t attend. Planning ahead for events that are NOT related to my cancer is so important for me since it seems to extend my horizon. The bee conference is an excellent example because it reminded me that I’ll have other things to do “on the other side” of the treatment, such as taking care of my two hives.
For the moment when I look at my diary, it seems heavily cluttered with doctors’ appointments; exams of all sorts (blood tests, PET scans, MRIs, etc.)and Round 4 of the chemotherapy coming up this Friday. On one hand, it is such a relief to know that the treatment is working, but it’s impossible to look forward to the fact that I’ll be feeling like Puppy Poop in a few days.
Yesterday Mr. T and I spent almost two hours consulting with an immunologist to whom we had been referred by Dr. Forton. He gave us a presentation on the importance of the immune system in cancer patients, as determined by longevity, and the deleterious effects of such factors as the chemotherapy itself, as well as nutritional deficiencies (in particular zinc, selenium, iron, and Vitamins A, B6, B12, C, D, E and folic acid). He went on to describe the action of various medications whose “side effects” act as immune system boosters. All claims that he offered were backed up with documentation of clinical trials.
He then prescribed an extensive blood analysis to determine my base levels for the above-mentioned minerals and vitamins among other things. I felt an immense satisfaction since this was the first time in my life that a doctor seemed to be pre-occupied by nutrition and its effects on disease, or more accurately on combating disease by enforcing the immune system. We headed home with my prescription for the various medications, and the vitamin and mineral supplements he had mentioned. I was walking on air when we left because I felt like I had just added a new card to my deck of solutions.
On the way home, we stopped at a traffic light right across from the local Apple store. He looked at me and said “Do you want a Mac? After all, it’s Valentine’s Day.” A fine example of what he does best -- Techno-love – and an offer I couldn’t refuse. He had obviously already done his homework on the subject, so we were in and out in about 25 minutes with my new Mac on order and a sack full of gadgets.
Now I'm walking on MacAir!
Friday, February 4, 2011
To Hell and Back on a Sofa
I had my third chemo session, last Wednesday (Jan. 26), and was being particularly attentive to my reaction on a day-by-
day basis afterwards. We had reservations for a ski holiday, the departure scheduled four days after the next chemo (Feb. 15), so Mr. T and I devised a plan wherein I would judge how I was doing after this treatment in order to determine if we would maintain the reservation or cancel it. Our plans were to repeat our experience of last year, when we took Charlotte skiing on an off-holiday week. Since she is not yet in grade school she can occasionally skip school. This year's reservations also corresponded with Émilie's school ski trip, 'classe de neige', so that both girls would have chance to ski. It was out of the question for me to get on skis, but at least Mr. T could sign up for a class and we could "get away from it all".
So Day 4 rolls around and it's not looking so good. Judging based on my personal scale -- Just Fine, Fair to Middlin', So-So, Like Shit, Like Hammered Dog Shit -- I was feeling Like Shit. But I kept trying to rationalize and force the outcome: "You just have to sit on a train. It's only 5 hours. We could take a taxi instead of a bus when we get there. etc." How I feel is determined to a large extent by the strength that I have in my legs. When I stand up I can determine if I have a strong support or if I'm wobbly or even worse, trembling. Day 5 comes and I save up by strength all day since we have a cinema date with a friend in the evening. I manage that, but am exhausted by the time I get home. Comparing a ten-minute drive to the cinema to the five hour+ train ride in the same condition, I slowly started to face reality, but was still hoping for a miraculous improvement the next morning.
Day 6 sees me feeling like Hammered Dog Shit as soon as I wake up, so I take a paracetamol and after breakfast I immediately head for the living room sofa. The persistent, nagging pain centered in my lower abdomen has not been touched and shows no sign of slacking. I call Dr. Forton, who prepares a prescription for a pain blocker, and Mr. T., coffee cup in hand, abandons his plans for a calm morning at work and dons his cross-town courrier uniform to fetch the prescription and then go to the pharmacy. Meanwhile, all I can do is wait.
I realize that according to what Dr. D had told me, the pain is really a good sign. It's related to the necrosis of the tumeurs, and that the smaller in volume the tumeurs become, the more readily the chemo molecules can penetrate into them and attack them even more. I entertain images from the Wizard of Oz of the Wicked Witch of the West, agonizingly crying "I'm melting, I'm melting!" after Dorothy (played by Dr. Delvaleriola) douses her with a bucket of Taxol/carboplatin. Fine, but what about evacuating that smouldering lump of black goo that remains behind, the obvious source of my pain? I'm praying for some kind of out-of-body experience, for some Cosmic Gendarme to come along and say "Would you please step out of the vehicle, ma'aam?" "Yes, Officer, I'd love to but there are no handles on the door!". Just relax and breathe, relax and breathe.
Mr. T returns with the goods and I let the first tablet melt under my tongue. The notice assures me that the effects will occur in 30 minutes and will last for 6 hours. I mechanically eat my lunch and then drag myself up to bed where the rest of the day, evening and night are all melded into one long haze of sleeping, relaxing, breathing, waiting for this, too, to pass but wondering if it isn't going to take me along with it on the way.
The next morning, the cards on the table. If this could happen again the next time, the thought of even leaving the house is beyond me. The ski vacation is quickly cancelled, but the bitterness of the decision lingers on as an aftertaste for days. I'm relieved to have finally decided but incredibly disappointed that I have to abandon our trip with Charlotte. I am forced to admit that I'm not in control of how my body reacts and consequently life, for the moment, is not as per usual and can't be planned weeks in advance. At the same time, I realize that no one else can decide what's best for me, that I'm the only one living in this body, and my first concern above all else is to take care of myself.
One of the amazing features of the human body is that we have no memory for pain. We can remember that we were or have been in pain, but we can't recall the exact sensation. So once the major discomfort was dealt with, then all of a sudden the minor ones lined up to start whining for attention. "What about us?" moans Tingling Hands and Feet?" "No, I'm next!", pleads Pounding Heart!" "Poor us", laments Tired Legs. Pfff. No wonder people say that when you've got your health you've got everything.
Fortunately, when I woke up this morning, I felt Just Fine.
day basis afterwards. We had reservations for a ski holiday, the departure scheduled four days after the next chemo (Feb. 15), so Mr. T and I devised a plan wherein I would judge how I was doing after this treatment in order to determine if we would maintain the reservation or cancel it. Our plans were to repeat our experience of last year, when we took Charlotte skiing on an off-holiday week. Since she is not yet in grade school she can occasionally skip school. This year's reservations also corresponded with Émilie's school ski trip, 'classe de neige', so that both girls would have chance to ski. It was out of the question for me to get on skis, but at least Mr. T could sign up for a class and we could "get away from it all".
So Day 4 rolls around and it's not looking so good. Judging based on my personal scale -- Just Fine, Fair to Middlin', So-So, Like Shit, Like Hammered Dog Shit -- I was feeling Like Shit. But I kept trying to rationalize and force the outcome: "You just have to sit on a train. It's only 5 hours. We could take a taxi instead of a bus when we get there. etc." How I feel is determined to a large extent by the strength that I have in my legs. When I stand up I can determine if I have a strong support or if I'm wobbly or even worse, trembling. Day 5 comes and I save up by strength all day since we have a cinema date with a friend in the evening. I manage that, but am exhausted by the time I get home. Comparing a ten-minute drive to the cinema to the five hour+ train ride in the same condition, I slowly started to face reality, but was still hoping for a miraculous improvement the next morning.
Day 6 sees me feeling like Hammered Dog Shit as soon as I wake up, so I take a paracetamol and after breakfast I immediately head for the living room sofa. The persistent, nagging pain centered in my lower abdomen has not been touched and shows no sign of slacking. I call Dr. Forton, who prepares a prescription for a pain blocker, and Mr. T., coffee cup in hand, abandons his plans for a calm morning at work and dons his cross-town courrier uniform to fetch the prescription and then go to the pharmacy. Meanwhile, all I can do is wait.
I realize that according to what Dr. D had told me, the pain is really a good sign. It's related to the necrosis of the tumeurs, and that the smaller in volume the tumeurs become, the more readily the chemo molecules can penetrate into them and attack them even more. I entertain images from the Wizard of Oz of the Wicked Witch of the West, agonizingly crying "I'm melting, I'm melting!" after Dorothy (played by Dr. Delvaleriola) douses her with a bucket of Taxol/carboplatin. Fine, but what about evacuating that smouldering lump of black goo that remains behind, the obvious source of my pain? I'm praying for some kind of out-of-body experience, for some Cosmic Gendarme to come along and say "Would you please step out of the vehicle, ma'aam?" "Yes, Officer, I'd love to but there are no handles on the door!". Just relax and breathe, relax and breathe.
Mr. T returns with the goods and I let the first tablet melt under my tongue. The notice assures me that the effects will occur in 30 minutes and will last for 6 hours. I mechanically eat my lunch and then drag myself up to bed where the rest of the day, evening and night are all melded into one long haze of sleeping, relaxing, breathing, waiting for this, too, to pass but wondering if it isn't going to take me along with it on the way.
The next morning, the cards on the table. If this could happen again the next time, the thought of even leaving the house is beyond me. The ski vacation is quickly cancelled, but the bitterness of the decision lingers on as an aftertaste for days. I'm relieved to have finally decided but incredibly disappointed that I have to abandon our trip with Charlotte. I am forced to admit that I'm not in control of how my body reacts and consequently life, for the moment, is not as per usual and can't be planned weeks in advance. At the same time, I realize that no one else can decide what's best for me, that I'm the only one living in this body, and my first concern above all else is to take care of myself.
One of the amazing features of the human body is that we have no memory for pain. We can remember that we were or have been in pain, but we can't recall the exact sensation. So once the major discomfort was dealt with, then all of a sudden the minor ones lined up to start whining for attention. "What about us?" moans Tingling Hands and Feet?" "No, I'm next!", pleads Pounding Heart!" "Poor us", laments Tired Legs. Pfff. No wonder people say that when you've got your health you've got everything.
Fortunately, when I woke up this morning, I felt Just Fine.
Thursday, January 27, 2011
Talking to an Angel
Telling folks that I have cancer has turned out to be a difficult experience for me. Just as when I first realized what was going on -- I automatically jumped to the "Oh my God, I'm going to die!" conclusion -- often a similar reaction comes to folks when I share this with them. Sometimes it brings up memories of some loved one of theirs who have died of cancer, and my news can take them to those dark places. So although I have had a few months to assimilate what's going on for me, to put things into perspective, this is not the case of the person who is hearing this for the first time.
Breaking the news to our grand-daughters, Émilie (10) and Charlotte (5), has been quite different, since they don't have any experience with cancer. When I was first hospitalized for the biopsy, I told them both that I was going into the hospital for an operation. Emilie is VERY squeamish about any sort of medical intervention -- it took both her parents and the opthamologist to hold her down to put drops in her eyes a couple of years agos during a routine eye exam -- so I just gave her the minimum amount of information and then asked her to draw me a picture that I could take to the hospital with me, which she willingly did.
Charlotte, who has had lots of health problems with allergies, asthma, pneumonias, is rather intrigued by the whole area of medical interventions, as if she has assimilated that this actually helps you when you have something wrong. She often plays with the doctor and veterinarian kit with her stuffed animals when she comes to visit. I had previously explained to her upon my return from the hospital that I had been operated on and that the doctors had discovered that I had lumps in my stomach that they wanted to examine. I showed her the small scars on my abdomen when we were putting on our pyjamas so that she could see how insignificant they were. (She had also been bouncing around on the couch next to me and it was painful when I got bumped, so I thought that if I showed her, she might be more careful in the future, which has proved to be true.)
As previously posted, as part of the evolution of the treatment, I've now lost most of my hair. In fact, I have a sort of thin layer of peach fuzz, but for all practical purposes and appearance, I'm now bald. This is not something that would escape Charlotte's attention for long, so the last time that she spent the night with us, I decided to explain what was going on.
Mamie Lee: Do you remember when I went to the hospital for the lumps in my stomach? Well, the doctors found out what kind of lumps they are and are giving me a really strong medicine to make them disappear. But the medecine is SO strong that it even made my hair fall out!
Charlotte: Je veux voir. (I want to see.)
ML: Are you sure?
Charlotte: Oui, je veux voir.
So I take off my "indoor" bonnet and she immediately slapped her hands over her eyes. It was a hell of a hard moment for me, since I didn't know what was going to happen next. I put my bonnet back on and told her it was OK to look.
Charlotte, although taken aback, gave in to her natural curiosity. She comes closer and asks, "Est-ce que c'est doux?" (Is it soft?)
ML: If you stroke it in the right direction, it is.
She tries but doesn't like the way it feels. I then explain to her that it will all grow back when I'm finished with my treatment. She asks if I will have curly hair again and I told her that probably it would be just like before but that she would have to be patient since it will take a long time to grow back.
Charlotte: Donc, c'est pour ça que tu portes un bonnet tout le temps? (So, that's why you wear a bonnet all the time?)
ML: Yes, and since it seems to scare you when I take it off, I promise to always keep it on when you're around, OK? I just wanted to explain to you because I didn't want you to take off my bonnet while we were playing to make a joke and then see my head without any warning.
Charlotte: D'accord. (OK)
ML: I just hope that you still love me and that you're not too scared.
Charlotte: Je t'aime toujours mais je n'aime pas tes cheveux comme ça. (I still love you but I don't like your hair like that.) This literally brought tears to my eyes since I was very reassured and she seemed completely capable of sorting things out.
Later on in the evening, she raised the pants leg of my lounging pyjamas to look at my legs and asked if I was bald everywhere. I told her no that I still had hair but just not lots of it. She proved this to herself by pulling the hair on my arms!
The next day, when Papet was getting ready to drive her home he told her that he had actually saved my hair when he cut it so that we could compare the before and after hair. That really intrigued her and she said "Je veux voir.". Since they were on the way out the door, he told her maybe it would be better next time, to which she replied, "Non, maintenant.". So up they went to his bathroom where he had saved the hair clippings in a little pail (this was news to me!). She plunged her hand in and seemed to be comforted by the fact that it was familiar and "doux".
Upon arriving at home, she told the whole story to her mom, with Papet prompting with the right questions. Émilie who was having her lunch at the end of the table never said a word but was taking it all in.
So now when Charlotte sees me, after my initial greeting kisses, she then inspects me by peeking under the edge of the bonnet and then quickly lowering it again, then next pulling the hairs on my arm. All of this is very reassuring to me, since I know that she knows what's going on and that she's comfortable enough with it to interact with me.
As for the medical update, I had a meeting this week with both the oncologist and the surgeon. The results from last week's PET scan are very good -- the metabolic activity of all sites has diminished. The cancer markers in the blood are down, and the size of the big lump has been greatly reduced and has become softer. Surgery is tentatively planned for the 22nd of March, the final GO depending on results on interim exams.
I had my 3rd chemo yesterday and woke up this morning as if nothing had happened. I'm keeping my fingers crossed that this will keep up.
Emotionally, I hit a low point this week just before going to see the oncologist. I felt really tired of "keeping up a good front" and let it be known that now that I was not afraid of immediately croaking, I was becoming impatient with the accumulation of the pesky side effects of the treatment: disturbed sleep, tingling in the hands, restless legs at night, sore muscles under my "permanently installed"central line, hot flashes, heart palpitations,etc. etc. She prescribed something to help me sleep and suggested that I also take magnesium supplements for the hands and legs. She also reminded me that Bordet has an excellent team of psychologists who are there to help patients deal with how the cancer affects their lives and relationships. I immediately called them and had my first appointment with a psychologist who came to my room while I was having my chemotherapy yesterday. I was so relieved to have a neutral person with whom I could really let go and tell what's going on for me. We've already made an appointment to follow up on this.
One more tool in my tool box!
Breaking the news to our grand-daughters, Émilie (10) and Charlotte (5), has been quite different, since they don't have any experience with cancer. When I was first hospitalized for the biopsy, I told them both that I was going into the hospital for an operation. Emilie is VERY squeamish about any sort of medical intervention -- it took both her parents and the opthamologist to hold her down to put drops in her eyes a couple of years agos during a routine eye exam -- so I just gave her the minimum amount of information and then asked her to draw me a picture that I could take to the hospital with me, which she willingly did.
Charlotte, who has had lots of health problems with allergies, asthma, pneumonias, is rather intrigued by the whole area of medical interventions, as if she has assimilated that this actually helps you when you have something wrong. She often plays with the doctor and veterinarian kit with her stuffed animals when she comes to visit. I had previously explained to her upon my return from the hospital that I had been operated on and that the doctors had discovered that I had lumps in my stomach that they wanted to examine. I showed her the small scars on my abdomen when we were putting on our pyjamas so that she could see how insignificant they were. (She had also been bouncing around on the couch next to me and it was painful when I got bumped, so I thought that if I showed her, she might be more careful in the future, which has proved to be true.)
As previously posted, as part of the evolution of the treatment, I've now lost most of my hair. In fact, I have a sort of thin layer of peach fuzz, but for all practical purposes and appearance, I'm now bald. This is not something that would escape Charlotte's attention for long, so the last time that she spent the night with us, I decided to explain what was going on.
Mamie Lee: Do you remember when I went to the hospital for the lumps in my stomach? Well, the doctors found out what kind of lumps they are and are giving me a really strong medicine to make them disappear. But the medecine is SO strong that it even made my hair fall out!
Charlotte: Je veux voir. (I want to see.)
ML: Are you sure?
Charlotte: Oui, je veux voir.
So I take off my "indoor" bonnet and she immediately slapped her hands over her eyes. It was a hell of a hard moment for me, since I didn't know what was going to happen next. I put my bonnet back on and told her it was OK to look.
Charlotte, although taken aback, gave in to her natural curiosity. She comes closer and asks, "Est-ce que c'est doux?" (Is it soft?)
ML: If you stroke it in the right direction, it is.
She tries but doesn't like the way it feels. I then explain to her that it will all grow back when I'm finished with my treatment. She asks if I will have curly hair again and I told her that probably it would be just like before but that she would have to be patient since it will take a long time to grow back.
Charlotte: Donc, c'est pour ça que tu portes un bonnet tout le temps? (So, that's why you wear a bonnet all the time?)
ML: Yes, and since it seems to scare you when I take it off, I promise to always keep it on when you're around, OK? I just wanted to explain to you because I didn't want you to take off my bonnet while we were playing to make a joke and then see my head without any warning.
Charlotte: D'accord. (OK)
ML: I just hope that you still love me and that you're not too scared.
Charlotte: Je t'aime toujours mais je n'aime pas tes cheveux comme ça. (I still love you but I don't like your hair like that.) This literally brought tears to my eyes since I was very reassured and she seemed completely capable of sorting things out.
Later on in the evening, she raised the pants leg of my lounging pyjamas to look at my legs and asked if I was bald everywhere. I told her no that I still had hair but just not lots of it. She proved this to herself by pulling the hair on my arms!
The next day, when Papet was getting ready to drive her home he told her that he had actually saved my hair when he cut it so that we could compare the before and after hair. That really intrigued her and she said "Je veux voir.". Since they were on the way out the door, he told her maybe it would be better next time, to which she replied, "Non, maintenant.". So up they went to his bathroom where he had saved the hair clippings in a little pail (this was news to me!). She plunged her hand in and seemed to be comforted by the fact that it was familiar and "doux".
Upon arriving at home, she told the whole story to her mom, with Papet prompting with the right questions. Émilie who was having her lunch at the end of the table never said a word but was taking it all in.
So now when Charlotte sees me, after my initial greeting kisses, she then inspects me by peeking under the edge of the bonnet and then quickly lowering it again, then next pulling the hairs on my arm. All of this is very reassuring to me, since I know that she knows what's going on and that she's comfortable enough with it to interact with me.
As for the medical update, I had a meeting this week with both the oncologist and the surgeon. The results from last week's PET scan are very good -- the metabolic activity of all sites has diminished. The cancer markers in the blood are down, and the size of the big lump has been greatly reduced and has become softer. Surgery is tentatively planned for the 22nd of March, the final GO depending on results on interim exams.
I had my 3rd chemo yesterday and woke up this morning as if nothing had happened. I'm keeping my fingers crossed that this will keep up.
Emotionally, I hit a low point this week just before going to see the oncologist. I felt really tired of "keeping up a good front" and let it be known that now that I was not afraid of immediately croaking, I was becoming impatient with the accumulation of the pesky side effects of the treatment: disturbed sleep, tingling in the hands, restless legs at night, sore muscles under my "permanently installed"central line, hot flashes, heart palpitations,etc. etc. She prescribed something to help me sleep and suggested that I also take magnesium supplements for the hands and legs. She also reminded me that Bordet has an excellent team of psychologists who are there to help patients deal with how the cancer affects their lives and relationships. I immediately called them and had my first appointment with a psychologist who came to my room while I was having my chemotherapy yesterday. I was so relieved to have a neutral person with whom I could really let go and tell what's going on for me. We've already made an appointment to follow up on this.
One more tool in my tool box!
Friday, January 14, 2011
Beware of Quacks, Charlatans, Snake-Oil Salesmen and other Crackpots!
It took me a full week after my last treatment to exit the Tunnel of Tiredness. Since Wednesday I've enjoyed being back on my feet and having such wild adventures as walking to the grocery store, baking a cheesecake, or filling the bird feeders.
Last night, Mr. T and I watched a very interesting documentary entitled "La Médecine qui Tue!" (Medicine that Kills!) which relates an alarming spread in a sect-like quackery, and its variants, which preys on sick people, primarily cancer patients. The "German New Medicine", as espoused by a former doctor Ryke Hamer (whose license to practice was revoked in 1986 for malpractice), or "Total Biology" promoted by one of his students, Claude Sabbah, are rapidly spreading across Europe, Canada and the US. The basic tenet of their "theory" is that cancer is not a disease but a manifestation of some psychological conflict that the person has not yet resolved. Living off of conference circuits and consultations, these quacks and their followers actually convince susceptible cancer patients to abandon their standard treatments of chemotherapy/radiotherapy ("It's all a plot of the pharmaceutical industry, greedy doctors, blah blah blah") condemning them to atrocious suffering and ultimately death. The documentary was supported by heartbreaking witnesses of family members who not only tried in vain to convince their loved ones to continue their treatment but who were often accused by them of being the cause of their disease! Perhaps the most insidious aspect of their approach is to put the blame on their victim for their own condition: "If you aren't healed, it's your own fault for not having resolved your conflict. And that will be €100, please."
A friend of mine, who has conquered two separate bouts of cancer, told me, when I shared the news with her of my condition, that folks would offer all kinds of advice. She was right. I have received a lot of information from various sources. Folks are usually quite taken aback when they hear what's happening and basically they want to help in whatever way possible. So when I hear some bit of advice or receive a link, I check it out and determine if there is something valid for me. It's like any bit of advice, I take what I like and I leave the rest.
My educational background centers around the natural sciences, with my first degree being in biology. Therefore, for me, the scientific method is the main criteria against which I base my evaluation of what I'm willing to include in my personal toolbox. However, I'm willing to include some "tools" which may not be backed with extensive research but which I give the benefit of the doubt. For example, I don't need research results to know that it's better for me to drink camomille or verveine tea rather than a strong expresso before going to bed!
What works for me is having access to the best, cutting-edge cancer treatment available today and building a relationship with my oncologist based on shared information, open communication, and trust. I supplement this with my own personal regime which incorporates advice received from others that I have validated and decided to take on board. This includes paying particular attention to how I eat favoring The List (see previous post on Eating to Defeat Cancer), practically eliminating alcohol from my diet, reducing coffee and increasing green tea intake, introducing kombucha ("There are scientific studies that support the health benefits of Kombucha that show it to be antimicrobial,[1][2] to have hepatoprotectivequalities,[3] and to be antioxidative[4][5] among other benefits.."), taking daily vitamin and herbal (milk thistle,Silybum marianum, and black radish, Raphanus niger) supplements, etc. I get regular exercise, when I'm not too tired, because I need to keep up my overall muscle and cardio-vascular tone and I include meditation in my daily routine, since this really helps me put things into perspective and feeds my "inner self" (as Mr T fondly teases me).
My regular doctor here in Belgium floored me the other day when he suggested that I read an article from Stephen Jay Gould, a remarkable evolutionary biologist and one of my personal mentors. How did Dr. Forton even hear about Stephen Jay Gould and what was he going on about? Stephen Jay Gould was diagnosed with abdominal mesothelioma and he wrote an article about cancer and statistics which I highly recommend. http://www.cancerguide.org/median_not_msg.html
I also checked out the statistics on my cancer and was initially set back, but fortunately I have come to put my personal situation into perspective, and this article was particulary helpful. It's probably not the case of those poor souls who feel defeated by the statistics and fall victim to those predatory quacks.
As Mr. T reminds me, I don't have to win the race, I just have to be on the podium.
Last night, Mr. T and I watched a very interesting documentary entitled "La Médecine qui Tue!" (Medicine that Kills!) which relates an alarming spread in a sect-like quackery, and its variants, which preys on sick people, primarily cancer patients. The "German New Medicine", as espoused by a former doctor Ryke Hamer (whose license to practice was revoked in 1986 for malpractice), or "Total Biology" promoted by one of his students, Claude Sabbah, are rapidly spreading across Europe, Canada and the US. The basic tenet of their "theory" is that cancer is not a disease but a manifestation of some psychological conflict that the person has not yet resolved. Living off of conference circuits and consultations, these quacks and their followers actually convince susceptible cancer patients to abandon their standard treatments of chemotherapy/radiotherapy ("It's all a plot of the pharmaceutical industry, greedy doctors, blah blah blah") condemning them to atrocious suffering and ultimately death. The documentary was supported by heartbreaking witnesses of family members who not only tried in vain to convince their loved ones to continue their treatment but who were often accused by them of being the cause of their disease! Perhaps the most insidious aspect of their approach is to put the blame on their victim for their own condition: "If you aren't healed, it's your own fault for not having resolved your conflict. And that will be €100, please."
A friend of mine, who has conquered two separate bouts of cancer, told me, when I shared the news with her of my condition, that folks would offer all kinds of advice. She was right. I have received a lot of information from various sources. Folks are usually quite taken aback when they hear what's happening and basically they want to help in whatever way possible. So when I hear some bit of advice or receive a link, I check it out and determine if there is something valid for me. It's like any bit of advice, I take what I like and I leave the rest.
My educational background centers around the natural sciences, with my first degree being in biology. Therefore, for me, the scientific method is the main criteria against which I base my evaluation of what I'm willing to include in my personal toolbox. However, I'm willing to include some "tools" which may not be backed with extensive research but which I give the benefit of the doubt. For example, I don't need research results to know that it's better for me to drink camomille or verveine tea rather than a strong expresso before going to bed!
What works for me is having access to the best, cutting-edge cancer treatment available today and building a relationship with my oncologist based on shared information, open communication, and trust. I supplement this with my own personal regime which incorporates advice received from others that I have validated and decided to take on board. This includes paying particular attention to how I eat favoring The List (see previous post on Eating to Defeat Cancer), practically eliminating alcohol from my diet, reducing coffee and increasing green tea intake, introducing kombucha ("There are scientific studies that support the health benefits of Kombucha that show it to be antimicrobial,[1][2] to have hepatoprotectivequalities,[3] and to be antioxidative[4][5] among other benefits.."), taking daily vitamin and herbal (milk thistle,Silybum marianum, and black radish, Raphanus niger) supplements, etc. I get regular exercise, when I'm not too tired, because I need to keep up my overall muscle and cardio-vascular tone and I include meditation in my daily routine, since this really helps me put things into perspective and feeds my "inner self" (as Mr T fondly teases me).
My regular doctor here in Belgium floored me the other day when he suggested that I read an article from Stephen Jay Gould, a remarkable evolutionary biologist and one of my personal mentors. How did Dr. Forton even hear about Stephen Jay Gould and what was he going on about? Stephen Jay Gould was diagnosed with abdominal mesothelioma and he wrote an article about cancer and statistics which I highly recommend. http://www.cancerguide.org/median_not_msg.html
I also checked out the statistics on my cancer and was initially set back, but fortunately I have come to put my personal situation into perspective, and this article was particulary helpful. It's probably not the case of those poor souls who feel defeated by the statistics and fall victim to those predatory quacks.
As Mr. T reminds me, I don't have to win the race, I just have to be on the podium.
Saturday, January 8, 2011
Walking the fine line
This past Tuesday featured my appointment with the oncologist followed by my second chemotherapy treatment. The good news from her is that the cancer markers in the blood are dropping and that The Lump is decreasing in size. She mentioned that she might decide to proceed with all six chemo sessions before doing the surgery, but this will depend on the results of upcoming tests, especially the PET scan scheduled for the 18th which will be the first real evidence of how effectively the chemo is performing.
The second treatment allowed me to start building my own comparison of how I react: still no nausea or vomiting, no significant loss of appetite, but I do have to deal with twinges of pain in the abdomen and a loss of energy for about two to three days. The word for the week is "flagada", a French slang word meaning "that which has lost all vigor", which is what it feels like for me.
This presents me with a real challenge, since in general I'm a very busy little bee, always flitting about from one activity to the next. I now have to admit that I'm sick, pay attention to what I need (am I hungry? do I need a nap? a bit of exercise?), and learn to accept things as they come. I'm beginning to understand why we refer to sick people as "patients", because this process requires a lot of patience which I'm learning to cultivate. It's a real exercise, walking that fine line, to keep checking in on my own attitude, accepting that I am sick, and yet not fall into a mire of self-pity. I just keep reminding myself that this, too, shall pass.
The shock of losing my hair has evolved into exploring my new bald condition. I treated myself to some new make-up this week since my eyes seem enormous, and some dangly earrings to go along with my new exotic, turban look. When I go out in public, I do have the feeling that people are looking over my shoulder to see where I've parked my camel, but maybe that's only my imagination. I've been working on a list of the advantages of being bald such as: erradicates the concept of "bad hair" day, economizes on shampoo and hairdresser's fees, allows me to get my head wet everytime I take a shower, doesn't waste electricity using my (newly-repaired!) hairdryer, etc. Audience participation accepted on this, so post your comments below if you have some inspiration.
Yesterday, Mr. T and I went for a walk in the afternoon and it was a real treat. For the first time in weeks, the temperature was above freezing and the smell of the damp grass in the fields was as sweet as flowers. We cut across the fields and then into the woods beyond where we spooked up a few roe deer and a large hare who all bounded off into the brush. How easy it was to walk along that trail at this time of year, free of brambles and undergrowth, with just a cushion of soft, brown leaves underfoot.
Looking out the window this morning, I can see the rain drifting down in sheets and hear the wind rustling through the trees. The chickens look pitiful with their saggy feathers but don't seem unduly perturbed by the wet bravely going about their quest for goodies in the grass. I'm just happy to be snug and warm inside my little nesty home with a full day ready to unfold before me.
Taking it easy is becoming a full-time job!
The second treatment allowed me to start building my own comparison of how I react: still no nausea or vomiting, no significant loss of appetite, but I do have to deal with twinges of pain in the abdomen and a loss of energy for about two to three days. The word for the week is "flagada", a French slang word meaning "that which has lost all vigor", which is what it feels like for me.
This presents me with a real challenge, since in general I'm a very busy little bee, always flitting about from one activity to the next. I now have to admit that I'm sick, pay attention to what I need (am I hungry? do I need a nap? a bit of exercise?), and learn to accept things as they come. I'm beginning to understand why we refer to sick people as "patients", because this process requires a lot of patience which I'm learning to cultivate. It's a real exercise, walking that fine line, to keep checking in on my own attitude, accepting that I am sick, and yet not fall into a mire of self-pity. I just keep reminding myself that this, too, shall pass.
The shock of losing my hair has evolved into exploring my new bald condition. I treated myself to some new make-up this week since my eyes seem enormous, and some dangly earrings to go along with my new exotic, turban look. When I go out in public, I do have the feeling that people are looking over my shoulder to see where I've parked my camel, but maybe that's only my imagination. I've been working on a list of the advantages of being bald such as: erradicates the concept of "bad hair" day, economizes on shampoo and hairdresser's fees, allows me to get my head wet everytime I take a shower, doesn't waste electricity using my (newly-repaired!) hairdryer, etc. Audience participation accepted on this, so post your comments below if you have some inspiration.
Yesterday, Mr. T and I went for a walk in the afternoon and it was a real treat. For the first time in weeks, the temperature was above freezing and the smell of the damp grass in the fields was as sweet as flowers. We cut across the fields and then into the woods beyond where we spooked up a few roe deer and a large hare who all bounded off into the brush. How easy it was to walk along that trail at this time of year, free of brambles and undergrowth, with just a cushion of soft, brown leaves underfoot.
Looking out the window this morning, I can see the rain drifting down in sheets and hear the wind rustling through the trees. The chickens look pitiful with their saggy feathers but don't seem unduly perturbed by the wet bravely going about their quest for goodies in the grass. I'm just happy to be snug and warm inside my little nesty home with a full day ready to unfold before me.
Taking it easy is becoming a full-time job!
Saturday, January 1, 2011
My New HairDon't -- Ça Décoiffe!
New Year's Day! It smacks of fresh starts, well-intentioned resolutions, new beginnings, all a welcome change of perspective after yesterday, perhaps the hardest day that I've had since learning of my cancer.
At the end of my Christmas visit to Nantes, I noticed that my scalp was really tender, and even though I had been warned that I would lose my hair and I had even made an appointment with my hairdresser to have it shaved off on the anticipated date, I still managed to tell myself that perhaps my winter hat was the cause of this discomfort. Returning to Brussels, I tugged on my hair just to test, and nothing happened, so I cancelled the appointment for the Grace Jones cut. I continued to notice that my scalp was not just tender but down right painful and that gave no signs of letting up. It was even hard to find a comfortable way to put my head on the pillow to sleep.
Yesterday morning while taking my shower, I started to shampoo my hair. In disbelief, I pulled my wet hands away only to see them covered in my hair. For me, forewarned was not enough to be forearmed. I don't think that any amount of reading, sharing or discussing could have prepared me psychologically to having my own hair falling out in clumps. I panicked and started to cry. Fear welled up and washed over me. Fear of what? Being bald? No, fear of dying. Totally irrational, but there it was.
It was just intolerable to run a brush through my hair and have what seemed like a head of hair in the brush. Impossible to get in to my hairdresser on New Year's Eve, so I asked Mr. T to put me out of my misery by cutting it all off. What a bittersweet scene in the bathroom: he set up my office chair and tactfully turned it away from the mirror, covered my shoulders with a towel and set to with his moustache scissors. Snip, snip, snip! Snif, snif, snif! I cried as he cut, leaving me with about 1/2 inch of hair all over my head. Mr. T, well-known in the family circle for his somewhat twisted sense of humour, assured me that I would make a big hit in a gay bar. If he keeps this sort of reassurance up, I may have to consider my options.
We headed for Heuchin (our place in France) for the weekend. We were invited to have a quiet dinner at with our neighbors, Eric and Nathalie. But Nathalie had other bigger things in mind and had invited Eric's sister and her husband, and another couple and their kids, all fine folks that we had met before. Despite my apprehensions, I stayed through most of the meal, but my heart was just not in it and I left at a diplomatic moment, hearing the unmistakable "call of the bed". I only wanted to go to sleep, so Eric gallantly escorted me next door.
So today is another day and I don't feel quite so freaked out. Mr. T reminded me that the hair loss is a really good sign because it means that the chemo is doing what it is supposed to be doing. If it is taking out my hair cells, then it is doing the same thing to the cancer cells.
One of the tasks for this weekend, besides writing Christmas cards and cleaning out the chicken coop, will be to finish off the task that we started yesterday by shaving my head.
Fortunately, Mr T finally got around to repairing my hairdryer this morning. Better late than never, n'est-ce pas? ;-)
At the end of my Christmas visit to Nantes, I noticed that my scalp was really tender, and even though I had been warned that I would lose my hair and I had even made an appointment with my hairdresser to have it shaved off on the anticipated date, I still managed to tell myself that perhaps my winter hat was the cause of this discomfort. Returning to Brussels, I tugged on my hair just to test, and nothing happened, so I cancelled the appointment for the Grace Jones cut. I continued to notice that my scalp was not just tender but down right painful and that gave no signs of letting up. It was even hard to find a comfortable way to put my head on the pillow to sleep.
Yesterday morning while taking my shower, I started to shampoo my hair. In disbelief, I pulled my wet hands away only to see them covered in my hair. For me, forewarned was not enough to be forearmed. I don't think that any amount of reading, sharing or discussing could have prepared me psychologically to having my own hair falling out in clumps. I panicked and started to cry. Fear welled up and washed over me. Fear of what? Being bald? No, fear of dying. Totally irrational, but there it was.
It was just intolerable to run a brush through my hair and have what seemed like a head of hair in the brush. Impossible to get in to my hairdresser on New Year's Eve, so I asked Mr. T to put me out of my misery by cutting it all off. What a bittersweet scene in the bathroom: he set up my office chair and tactfully turned it away from the mirror, covered my shoulders with a towel and set to with his moustache scissors. Snip, snip, snip! Snif, snif, snif! I cried as he cut, leaving me with about 1/2 inch of hair all over my head. Mr. T, well-known in the family circle for his somewhat twisted sense of humour, assured me that I would make a big hit in a gay bar. If he keeps this sort of reassurance up, I may have to consider my options.
We headed for Heuchin (our place in France) for the weekend. We were invited to have a quiet dinner at with our neighbors, Eric and Nathalie. But Nathalie had other bigger things in mind and had invited Eric's sister and her husband, and another couple and their kids, all fine folks that we had met before. Despite my apprehensions, I stayed through most of the meal, but my heart was just not in it and I left at a diplomatic moment, hearing the unmistakable "call of the bed". I only wanted to go to sleep, so Eric gallantly escorted me next door.
So today is another day and I don't feel quite so freaked out. Mr. T reminded me that the hair loss is a really good sign because it means that the chemo is doing what it is supposed to be doing. If it is taking out my hair cells, then it is doing the same thing to the cancer cells.
One of the tasks for this weekend, besides writing Christmas cards and cleaning out the chicken coop, will be to finish off the task that we started yesterday by shaving my head.
Fortunately, Mr T finally got around to repairing my hairdryer this morning. Better late than never, n'est-ce pas? ;-)
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