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!
Thursday, January 27, 2011
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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