Just like the end of the week is filled with elation and excitement for the time to be had with the family, the flip side is the weight of departure after the weekend. I know this all sounds a little melodramatic, but when kids miss you they let you know! Monday mornings are a little heart wrenching for me right now. Long sweet goodbyes from Kai and Pippin make me feel special and very loved. This will be a good week in that Wednesday is already hump-day for all the treatments. I will be exactly half way and instead of climbing the mountain, I will be on the descent.
I have been working extra hard at trying to avoid all the dreaded germs out there right now. The combination of being in peak flu season and my slightly lowered immune system has meant that I have had to be quite vigilant about hand washing and cautious about where I put my hands in public spaces. Yesterday I felt like I was coming down with something and so resorted to some "Oil of Oregano" -- it seemed to nip it in the bud nicely. One of the concerns is that when I wear the mask for treatments, my mouth is biting down on a fitted piece and so the only breathing I can do is my nose. If I get congested, it will make the treatments very difficult. I really want to get through the next five weeks with no interruptions. Well that is about as exciting as my process is this morning. I have a ferry to catch and need to be on my way. Until later...
Last night I was about to go to sleep when Yogesh sent me a You-Tube clip that was the perfect recipe for the end of my week. Lets just say the piece made for some infectious laughter. Thanks for that Yogesh -- up until yesterday it has been raining here solidly and I was beginning to forget what the sun looked like. So it was great I went to bed with a smile AND surprise: I got to wake up to a stunning crisp blue sky day with lots of sun. What a gift! Of course Friday is also good in that I get a break from the treatments and head home to my loving family on the Island.
Sometimes when I am at the Cancer Agency getting treatment I look around thinking how it all looks so modern and sophisticated but then I wonder: how would I look back at this same picture 50 years from now? It seems to me that even the 80's and 90's are beginning to have a dated quality about them. We tend to do things in the present believing that it is so cutting edge and that we are lucky to have all these modern amenities at our disposal. Then again' if one looks a little closer (much like the ape in the space suit), maybe we are still in our infancy with many of these scientific inventions. Maybe the premises that this science is built upon is false. The white coats worn by medical staff in the hospital are intended to give an aura of expertise and clinical precision. I often feel, however, a little like people are fumbling around me, still working things out. It is as if I am the lab rat on which they get to try out these fancy mind zapping machines. This whole thing is a brave adventure on my behalf. In order for the radiation to do its work properly and create genetic damage to the tumor, it also inevitable is traveling through lots of healthy tissue. The radiation specialist told me the other day that in order to ensure that they get all of the tumor, they need to cast a slightly wider net and inevitably some of the healthy surrounding tissue will be subjected to the treatments. I will be curious to see if there are some unintended side effects in years to come... It is interesting how something that is basically so damaging to human anatomy is also a tool for getting rid of unwanted things in the body. What a mind fuck! I have been feeling relatively good this week. Fatigue is the main constant I am experiencing. After about one and a half hours of being out and about I tend to be fried and need some horizontal time. So that is what I have been doing... lots and lots of rest... Almost too much! Love and hugs to all of you.
Continuing with my conversation from the other day -- there is some pretty compelling evidence out there about cell phone use and dangers to our health.
This last summer, Dr. Ronald B. Herberman, director of the University of Pittsburgh Cancer Institute, issued an unprecedented warning to his faculty and staff suggesting that they limit cell phone use because of the possible risk of cancer. Herberman’s memo was sent to about 3,000 faculty and staff saying that children in particular should use cell phones only for emergencies because their brains are still developing. He also suggested that adults should keep the phone away from the head and use the speakerphone or a wireless headset. He even warned against using cell phones in public places like a bus because it exposes others to the phone’s electromagnetic fields.
Health Effects of Electromagnetic Radiation The following is an interview by freelance reporter Michael Fosburg with Dr. George Carlo, Chairman of the Science and Public Policy Institute, a non-profit public health group based in Washington, D.C. Dr. Carlo is recognized as one of the world’s top experts on the health effects of electromagnetic radiation. He is the co-author, with Martin Schram, of Cell Phones: Invisible Hazards in the Wireless Age and was the chief scientist of the world’s largest research effort into wireless safety.
MF: Dr. Carlo, what is the Science and Public Policy Institute, and what role does it play regarding the dangers of cell phones?
GC: We opened the institute in the early 1990s as a forum to address public health issues where there was a clash between science and politics. Over the years, we have studied controversial problems ranging from silicone breast implants, to hazardous waste sites and, more recently, mobile phone health risks. In 2002, we established the Safe Wireless Initiative project, initially to continue research into mobile phone dangers and, more specifically, to monitor health problems among cell phone users.
MF: Is the Safe Wireless Initiative program still in operation?
GC: Yes. In fact, we now have more than 6,000 members and we’re growing every week. Our main focus is to provide information to consumers about the cell phone safety problem and helpful solutions to that problem. Our health concerns registry is the only post-market surveillance program in the world tracking health problems among cell phone users.
MF: Shouldn’t the government or the cell phone industry be doing that tracking?
GC: Yes, they should. But while the mobile phone industry and government regulatory agencies continue to maintain that there is no evidence of increased disease among cell phone users, neither are monitoring these consumers for disease. No one is looking for problems or even counting, so how would they ever know if problems exist? Based on the $28 million research program I oversaw in the 1990’s-research funded by the industry and overseen by a formal government interagency working group-we recommended that surveillance of phone users be put in place as far back as 1998. But absolutely no consumer protection steps have been taken. I find that inexcusable.
MF: How can the government be so silent with so much publicity about cell phone dangers over the years?
GC: The cell phone industry has effectively changed the focus from public safety to politics, and they have used political pressure to keep the lid on the issue. The watch dogs in government are not barking, and that has left the consumer unprotected. The Food and Drug Administration has inexplicably walked away from putting any regulatory control on cell phone companies. The Environment Protection Agency had its radiofrequency radiation budget cut to the point where they are no longer involved in the issue. Because of the flow of dollars associated with wireless communications, the Federal Communications Commission has openly become a financial partner with the industry in deploying the technology. In effect, mobile phone health risks are not regulated in the U.S. Consumers are unknowingly on their own in terms of protection. The Safe Wireless Initiative provides consumers with a safety avenue.
MF: Here is a simple question that I have always wanted to ask. How do cell phones actually work?
GC: The cell phone is really a radio that sends information signals on waves to a base station sometimes several miles away. To cover the distance, the signal is pushed by a burst of power which is the source of the radiation we are most concerned with. The farther the base station, the more power needed to carry the signal; the more power, the more radiation generated-and the greater the danger. Thus, the power bars on your phone give you an indication of how much radiation you are being exposed to during a call-the fewer number of bars, the greater amount of radiation.
MF: With that being the case, can I protect myself by making calls shorter to reduce the radiation?
GC: Not necessarily. The length of your call, or even the number of calls you make for that matter, are not as important in terms of the radiation as where you are when you make the call relative to the base station. For example, there is no way to know whether ten one-minute calls are better or worse than one ten-minute call in terms of health risk. That makes it difficult because there are no easy behavior changes that solve the problem.
MF: What does the radiation from a cell phone do to us?
GC: First, we are concerned about dangers from two different types of radiation associated with cell phones: the near-field radiation plume and a more subtle far-field contribution. The near-field plume penetrates your body about six inches from the center of the phone’s antenna. If it’s against your head, it penetrates your brain. If it’s on your waist, it penetrates the important blood-forming flat bones of your hips. This plume is like a “bull in a china closet” and it overtakes all of your body’s natural defenses against this type of exposure. We know now that this near-field plume leads to tissue dysfunction such as leakage in the protective blood brain barrier and genetic damage, including interference with DNA repair. These biological effects lead to conditions ranging from brain tumors to learning difficulties in children.
MF: What about other type of radiation that you mentioned, the far-field?
GC: This field produces subtle effects for most people, but the effects are insidious and accumulate over time. Background levels of electromagnetic radiation have increased dramatically over the past decade, and cell phones are now a major contributor to that background load. The mechanism leading to the danger is interference with the human biofield-the sum total of the energies generated as part of our metabolism. Our biofield is a major determinant of overall health and wellness. The increasing level of environmental electromagnetic radiation competes with our own energies and produces a general compromise of our physiologic processes. Over time, this deterioration can lead to a host of symptoms ranging from hyperactivity and attention deficit behavior to lowered immune response. Some people are extremely sensitive to this type of radiation, and electrosensitivity prevalence is now on the rise around the world. This is a problem that will continue to worsen over time.
MF: So, overall, where do we stand today with all of this?
GC: After two decades of science, we know that serious health risks are associated with radiation emitted by mobile phones and other wireless devices. We are particularly concerned about brain cancer, other tumors of the brain, eye cancer, genetic damage, brain ailments, as well as behavioral and learning problems. Children have become the main focus of our Safe Wireless Initiative because they being using mobile telephones very early in life, and they are showing unprecedented infatuation with the devices resulting in excessive usage. All this while their growing tissues and organs are more susceptible to the type of damage that we have seen in the research. Consider that published epidemiological studies of adult cell phone users indicate that usage in the neighborhood of 500 minutes per month over about ten years leads to a doubling in brain cancer risk. A study we conducted last year in Buffalo, New York, showed average teenage usage in the neighborhood of 2,600 minutes per month-more than five times greater than the adults in the studies showing increased cancer risk. What will happen to these young people after a life-time of use? No one knows exactly, but the predictions based on today’s data are dire.
MF: If this is such a big problem, how come everyone isn’t talking about it?
GC: The big problem is that the telecommunications industry has not only failed to heed intervention recommendations that would make the products safer, but has purposefully, and effectively, sought to shape public perceptions about dangers by controlling both the media and the output of the worldwide scientific research agenda. In some cases, the mobile telephone industry has circulated false information to the news media about research findings. Furthermore, the industry has actively sought partners such as the Disney Corporation to facilitate sales to children, openly identifying the 8 to 12 year-old age group as a “target market,” called the “tweeners”. Thus, the “need” for the cell phone is established very early in life, and it becomes almost an addiction. This is scarily similar to addictive nicotine added to cigarettes. This type of open disregard for the safety of consumers, especially young people, is grotesque.
MF: But shouldn’t the government be protecting consumers from this danger?
GC: Yes, they should. but while some governments around the world have taken steps to protect citizens and consumers, the actions have been slow and minimal because of the resistance movement mounted by the industry. In the United States, nothing has been done for protection whatsoever. If you follow the money, the reasons become clear. In both the United States and Europe, billions of dollars are being collected by governments who sell the telecommunications spectrum to the private sector. Revenues collected from spectrum auctions in the late 1990s and continuing tax revenues from consumer usage have put governments in a compromised position: they have a vested economic interest in the continued financial success the wireless industry. Strong regulatory control to protect consumers is arguably counter to government political and financial interests.
MF: So, what works?
GC: The most effective primary preventive are the hands-free headsets that effectively move the near-field radiation plume away from the body, thus significantly reducing exposure. I personally use an air-tube headset-fully wired headsets an act as an antenna, attracting ambient far-field radiation toward the head. The air tube lowers that risk. Phones equipped with speakerphones accomplish the same primary protection, as long as the phone is kept more than six to eight inches away from the body when being used. There is a noise field technology, developed jointly by scientists in the U.S. military and the private sector, that may soon be available to consumers that effectively eliminates first stage biological effects triggered by both near-field and far-field radiation. There are also secondary preventives that compensate for biofield interference from general sources of electromagnetic radiation. These are available as after-market accessories that can be attached to the phones themselves. Finally, consumers should remember that any steps they take to improve their health will help them fight the effects of those exposures.
I have just been having a conversation with my dear friend Cam about how good work can be for us humans. It can often have the role in our lives of giving us lots of strokes. That certainly is the case for me with my work. Working in a high school is an intensely social experience. Everyday there are 1200 students in the building and a significant amount of adults in supporting roles. Then there are the parents with whom I also have a large amount of daily contact. All said and done, the role I play at work becomes a significant part of my identity and really gives me a strong sense of belonging. In addition to the security the "role" provides to me, I also get lots of regular strokes from kids, teachers and parents -- all very good for my ego! Of course in the immediate sense that "safe" little bit of structure has been taken away from me and I have been left feeling like I am a leaf floating in the wind. Truth be told, we humans are all always floating out there in the ether but we get very sophisticated at holding onto various constructs to add meaning to our lives. It really isn't until it is taken away that one realizes how much of ones identity is tied to "what one does". Being out of the loop like I am now (and was to some degree with 8 months of traveling) brings up lots of existential questions. I just don't feel as solid as I normally do in terms of knowing who I am. Gosh, maybe, just maybe . . . life is all just one big random experience -- with the only real meaning being the meaning we choose to attach to it. Actually I think these wobbly moments are good for me. It prepares me for some inevitable times that lie in all our collective futures. Said simply, loss will come to us all in time because we are all mortal. Hiding from those truths, might just make the experience harder when it comes. I do not mean to be a downer -- I just have lots of time on my hands to contemplate my navel right now.. The rain keeps pouring here on the West Coast. The mountains have lovely sprinkles of white on their slopes. Until tomorrow...
Here we go again. After a weekend of blissful recharging with the kids, Skye and Bay at home it is Monday and I am back again in Vancouver. Treatment time was at 4pm this afternoon so I was able to amble a little at home in the morning, taking the kids to school and hanging out with Bay while packing. It was good to maximize my weekend time before getting geared up for more radiation treatments.
On one of my blogs last week I spoke a little about all the advice that my condition has tended to elicit from some people when they found out about it. While on the ferry today, I was thinking about other types of conversations that have flowed out of this health situation I am in. One conversation that has been quick to develop over the last many months is the question of what may have caused my tumor. This is an especially compelling conversation given that I am quite young and that I have always lived a relatively healthy life style. Of course, we will never likely know but I do of course have my own crank opinions. Popular causal suggestions from people have included things like ingestation of aspartame ( a known neurotoxin), the use of cell/cordless phones, radiation towers, stress and the connection between our emotions and our health, ect, ect... Realistically it is probably multi-causal given that we live in a world of increasing complexity with huge arrays of pollutants coming from every arena of our environment. I must admit, after following a lot of media stories about health concerns with cordless phones, I have considered that it may have been a significant contributing factor. It is definitely the case that we have used one for a long time and I have always favoured my left ear (the affected side) when using the phone. After following some very compelling reports about why cordless phones are a bad idea, we have eliminated them from our lives and gone back to the old corded phone varieties. Supposedly cell phones and wireless contraptions carry similar health concerns -- so the question is where does one stop with the elimination of these pollutants? We will see.... There is so much convenience associated with so many of these tools we use. That said, maybe we will look back on a lot of this technology we use in years to come like we look back now on tobacco. Time will tell. It is getting late and I must get my rejuvenating sleep... Until tomorrow. Good night!
I had another long and very deep sleep last night. Bay put it beautifully when I spoke with her on the phone this morning: she said that sleep is my "body's repair kit". Of course this is the case! Everyday the radiation gets in there and causes some intentional havoc and then my body responds to the situation during my sleeping hours. This probably explains why I have been averaging 11 to 12 hours sleeps this last week. I feel quite light today, in anticipation of heading back to my lovely home on the island. In fact I am feeling very good this morning. Almost normal... It will be good to go home this evening to be with the family and to see Bay who arrived on Monday from the Kootenays (after I had already left). There have been some tough evenings saying good night to the kids on the phone (or skype) where they have been quite sad. I think the good thing about going home will be that they will realize I am just fine and that everything will return to normal in a few weeks from now. There are a lot of unknowns for them right now because of all the heavy terminology that has been thrown around. Words like tumor and cancer (as in clinic) are very loaded and can install unnecessary fears for them. I look the same, act the same and it is still me -- all of that will be good for them to see. My wonderful friends, Cam and Cristina have been absolute gold for me here in Vancouver. It is good to have lots of history with friends in a situation like this. We have known each other for almost 18 years and I feel likes I can really relax around them. If I come home and need to rest, then so be it -- I do not have to explain myself to them. They have been incredibly nurturing and kind to me. I am lucky to have such good people in my life. Until next week...
It probably comes as no surprise to many of you who know me well that I am a wee bit of a control freak. That said, I am a firm believer that self-awareness is 90% of the battle and I have made significant efforts to not permanently damage my children or my dear wife with my attempts to control the environment in which we live. After all, if you know something about yourself then you can affect some change... Right? So why am I telling you this? Well... this whole treatment experience has been one big exercise in learning to further "let go". I feel like I have been plucked out of my regular life in Victoria and here I am twiddling my thumbs in Vancouver away from my sweet family. The truth is -- I hate being away from my children. Yet I know That this will be good practice for me because they will eventually leave the nest anyway and I will have to be a person beyond the realm of just being a parent. The other advantage of being away is that I can just focus on myself and I can indulge my need to sleep and rest without the day to day responsibilities of being in my own home.
So I will continue to just let go and let this experience happen to me. No amount of resistance will change the fact that this is what I have to do right now. I chose the picture above because it kind of represents that idea of "having stuff done on me" -- specifically my head. It is a strange experience going to that radiation ward everyday and getting into that fantastical high tech gear and then letting them zap me with those mysterious magical rays. There is a lot of faith required on my behalf in the expertise of others, especially knowing that those rays are as much damaging as they can potentially be helpful. Clearly I must let go control -- that's me we are talking about, the ultimate control freak! As I write this blog I realize that it is a tad self-absorbed. Somehow though, by externalizing my thoughts and feelings into text, it helps me make sense of the whole thing and I think it must be good for me at some level. It also gives me a creative outlet which is a good thing for a person with a lot of time on his hands. I woke up today feeling quite beaten up. It is almost like I went on a serious pub crawl last night and this morning I need to drink as much water as possible to flush out all the toxins from my system. The funny thing is that at other times in the day I can feel completely normal, like it is just another day. Until tomorrow...
I have been at the receiving end of lots of advice lately. Some advice has been well received, whereas, I must admit at times I have wanted to be spared the well intentioned tidbits of how to deal with my current fate. Its funny how these things come back to haunt one: Skye has told me for years that listening is all that is required -- advice can be a tad patronizing! As a counselor to hormone crazed teens I should know this without my lovely wife having to be in the position of saying: "I told you so...". Well lets just say -- you were right all along, dear! I hope that feels good to hear those words.
So continuing on with the conversation about self-care, which has been a major topic directed towards me from all those well meaning people in my life -- I have been excellent at taking care of myself thus far. My dear friend Cam who I admire so much for his daily self-discipline in the realm of self-care, has taken me under his wing and enlisted me in his yoga boot camp. As Skye said last night I will soon be a "Yoga Divo" (masculine for Yoga diva). It has been good to take on the daily Yoga routine with him -- it is very good to work on stretching out all my limbs and to be more conscious of my breathing. My mother would be proud! I have also heeded the advice of many and made sure that I rest lots throughout the day. Two things have helped this practice so far. For one, we have had torrential rain for some days now -- known locally as the Pineapple express (because the weather systems passing through have their origins in the Hawaiian tropics). The desire to hibernate is strong in this kind of weather. The other contributing factor is the radiation itself -- it is making me very tired already. I thought it might take longer to unleash its action on me but I have been quite wiped out. So, let it be know I am resting up plenty!
Two down and twenty three to go! I can see that there is going to be a real rhythm to this experience as the days roll by. It might be a little like giving blood on a daily basis... Go in, see all the familiar faces, take your position, get your daily dose of radiation and on to the next one... The truth is it is all a little surreal for me. Especially the setting. I keep wanting to pinch myself. Is this my life? Today in the waiting room I was next to someone with what was clearly some very advanced lung cancer. He was wheezing constantly and there was a lot of laboured breathing. The poor man looked like he had been through some really tough times. Once again it was time for me to take stock and realize how tough things can be for some people.
There is a definite feeling associated with the radiation treatment. I went in feeling somewhat recovered after a good nights rest and then after today's session I experienced the same basic bodily sensation. It is hard to explain. It is this very zingy feeling -- a little like I had an electrical shock earlier in the day and like I am very speedy and a little altered. Like I said it is hard to pin point but definitely a distinct sensation. A little like biting down on tin foil. Maybe someone out there knows how that feels... I am including some art I found on line by someone called Keith Peters. I will make an effort from here on in to provide the name of the artist so they get credit for their work. His work evokes a very definite feeling. It looks like it is all generated on a computer. Very interesting work, if I might say so myself. Until tomorrow...
Well the first day has come and gone. I think getting past the anticipation was a very good thing. The whole family has gone through a little bit of a build up to this whole "treatment" thing and now that it is underway the whole thing can be normalized. There was definite sadness on all sides with parting (filled with a healthy dose of vulnerability) but it will certainly be a growing experience. We will all be stronger for it by the end. It is these little experiences in life that makes one take stock of how lucky one is. I have so much wealth in my life and I am not taking it for granted right now. So the first day was a little busy ... packing, dropping kids off at school (with a little added emotion), a rain drenched ferry ride and then making it to the appointment. Mo was a star and came with me for some moral support. It was lovely to have his calming presence with me. A little like having Peter Sellers from "Being There" at my side. What a wonderful man! The appointment involved some very skilled medical practitioners, picking up on all the cues that I was new to this whole thing, showing me the ropes and showing lots of compassion. There was a lengthy period of adjusting equipment and making sure that the radiation target zone would be accurate. Then we finally got on with it... In a matter of 15 to 20 minutes I had the radiation treatments. I was pinned down to a high tech looking bed with this Darth Vader mask that kept me very immobilized. It was definitely very claustrophobic but I simply did some good visualizations -- some how Slocan Lake always seems like a good place to visit in those stressful moments. The radiation is much like having X-rays... That said I did feel a little weird for the rest of the evening. I never really worked out if it was the emotion behind the whole experience or the radiation itself. I came home to the warmth of Cam and Cristina's home and pretty much crashed like a log. Sleep was the best thing for me to cope with day one. Speak soon
I am about to start on a new journey that I would never have seen coming a few years ago. Before November 2008, I had never heard of an Acoustic Neuroma, but now it's part of my everyday life. With family and friends far and wide, I thought it would be good to give some information of how it all began. For the period leading up to the diagnosis, I was having a series of strange hearing and brain sensations. Often it would start from out of nowhere with a sudden, intense ringing in my left ear, along with some very noticeable instant hearing loss. The episodes would leave me feeling disoriented and almost like my head was under water. Conversations were hard, and I would feel a little panic because I was confused about what was going on. Initially, I figured I had just listened to much too much loud music and it had finally caught up to me. The thing that finally made me realize that the problem was quite severe was when I rubbed my fingers next to my left ear, I could not hear a thing. Clearly I had some hearing loss and the concern was that it might be getting worse. Like all reluctant males (with medical procedures) I did eventually have it checked. My doctor, who was a star, did not brush it off and recommended that I should go see an audiologist and an ENT (Ear, Nose & Throat) specialist as soon as possible. It turned out that the hearing in my left ear was poor enough for the audiologist to recommend that I might need a hearing aid. The ENT specialist decided that it would be prudent for me to have an MRI "to rule out some things" (at that point unspecified) -- and said it was most likely just a virus that had caused the hearing loss. He said I had little to be concerned about. So I did have the MRI -- a very claustrophobic experience, and then I almost forgot about the whole thing, except for the occasional strange hearing episodes that kept happening. Fast-forward a few months (it took awhile to get my next specialist appointment) and this time I was in for a rude awakening. The specialist sat me down and told me that I was the rare exception in these types of cases and that the MRI had exposed a mass (acoustic neuroma) that was causing the problem. The word he used was "tumor" and I remember that I had quite the adrenaline response to the news. My heart pounded and the room got smaller .... The thing that added some real complications to the whole affair was that I was on the verge of an eight month traveling stint with my family, which was something that had been planned of over five years. How was this news going to affect our plans? The ENT specialist told me that typically I would have four options for dealing with the Acoustic Neuroma. They were as follows: (1) I could do nothing, and simply see how it progresses. This did not seem like a great option since I was clearly exhibiting some symptoms related to the tumor and did not want to experience additional hearing loss -- which apparently was permanent. This also was not an option because I did not want it to continue to grow (no matter how slowly). In time it would become more and more dangerous to my overall health. (2) I could have it surgically removed, but this would involve a lengthy 7 to 10 hour surgery that was very invasive and would inevitably lead to full loss of hearing on my left side. It would also likely lead to a weakening of my facial nerve causing a paralysis to one side of my face. Not good for my ego! (3) I could endure a one-day blast of radiation. Such a high dosage of radiation in one sitting has some definite side effects. Full hearing loss on my left side was a given with this option as well as facial paralysis. (4) The fourth option was to have "fractionated stereotactic radiotherapy". Basically, it's a much lower dose of radiation spread out over 25 treatments. The "target" is generated from using 3-D images from a CT scan, which allows for a more precise beam, this in turn results in minimal damage to the surrounding area. The treatment would be every weekday (not including holidays) for about 15 to 30 minutes. It would require that I sit for a "mask" fitting, which is used to make sure that my head is in the same position for each treatment. The problem with this treatment was that the machine for doing the procedure is very specialized and expensive. There was only one of them in the Province of British Columbia -- and that was in Vancouver. I would have to be in Vancouver for the five week treatment away from my loving family. I could, however, go home on weekends.
At that time, I needed information and by all accounts it seemed like the soonest I would be able to get appointments with specialists that might have ideas for intervention was months away. We were due to leave within the month to SE Asia. Without going into too much detail, a few friends came through for me and helped me get a crucial appointment with a brain surgeon the very next day. After some examination of the MRI, the brain surgeon was quick to say that given the location of my tumor (by my brain stem) and given the size (already close to 2 cm), he felt like he would prefer not to operate. I had to get an appointment with a Radiation Oncologist (a cancer-radiation specialist) but it also had some serious wait list time lines. Once again the stars aligned for me; it was a few days before Christmas, so when I called the Cancer clinic in Vancouver they said normally I would have to wait for a few months but there was an opening on Christmas Eve. Apparently people like to go do last minute shopping on Christmas Eve and don't like to come for appointments ... Lucky me! After a long bus and ferry ride at a very emotional time for the family (the day before Xmas -- the kids were super excited, and all of the adults were anxious!) I saw Dr. McKenzie at the Cancer clinic. My dear friend Cam came with me because both Skye and I could not leave the kids right before Christmas -- we did not want the kids to know yet about all this looming chaos. Dr. McKenzie basically explained to me that the tumor mass compresses the hearing nerve, which in turn causes the ringing, the strange head sensations and then the hearing loss. He said that if one was to get a brain tumor, it was one of the better ones to get because it tends to be slow growing. Best of all it is not malignant. All that said -- at my young age, it needs to be taken care of before it grows larger and causes other bigger problems. Dr. McKenzie felt that I should press on with the travel plans, given that it was a once in a life time opportunity. He felt that the time was not too great and that on my return, he would schedule me for the "fractionated stereotactic radiotherapy" -- the best choice for me in his opinion. I went away and educated myself to the best of my ability and came away with the same basic conclusion. It was the least invasive and left me with the best chance of saving what was left of my hearing. According to the doctor, the main issues that might arise for me in the treatment phase, would be significant fatigue, some dizziness and a little weakening of my facial nerves. It tends be different for every person undergoing this treatment.
The following was involved in getting ready for this procedure
A few weeks back I went over to Vancouver for the preparatory process. This included some blood work, the making of a mask, a CT scan, which included being injected with a special dye, and a tour of the machinery. It was an intense day in that I was at the Cancer Clinic for 5 hours, and it was the first time I really felt like a patient. Added to the increased reality of the situation, I was surrounded by some very sick people undergoing some very intense treatments for cancer. It was somewhat emotionally draining.
The making of the mask consisted of having strips of hot plastic applied to my face until it cooled, and then the making of a mouth piece that one bites down onto to avoid any movement during the radiation treatments.
I was then given a trial run of the daily procedure:
I would have the mask lowered onto my face --a little like Darth Vader!
The mask would be clamped down on all sides -- for the machine to work properly, I would have to be in exactly the same position for each treatment. The mouth piece helps for this part.
Finally, one lies down while the machine repositions itself for each "dose" of radiation.
Well, there you have all the gruesome details of my journey so far. My plan is to blog about it as I go so that people I care about are in the loop, and also so that I can benefit from the catharsis of writing about this unusual experience.
We have all just lived through that amazing experience called Halloween over here in North America. It definitely is a huge highlight for the kids and I am sure that comes as no surprise. Pippin and Kai have been been getting progressively more giddy as the day has come closer. The build up of excitement involves many details.... First the fun of planning out our costumes, followed by intricate decorations to make the house as scary as possible and then off course the day itself with "trick or treating" for the candy. It all amounts to a dream holiday for kids and adults alike. Then of course there is a good old fashioned fallout at the end with the inevitable sugar crash and the realization for the kids that the day has come and gone for yet another year. All said we had a blast this year and here are the pictures to prove it... Hope these pics find you all well!
We have a Cycad in our living room that has at different times thrived and at others it has looked like it might be on its last legs. Recently it put out all this new growth and I was struck by how beautiful it is. Each new shoot is so delicate and keeps changing everyday.
I decided to take some pictures and share this little treasure in our home. This rare prehistoric plant came to us via a previous room mate who had a thing for odd and exotic plant species. He and his partner moved out of the country and felt like they were unable to take the plant with them. I am unsure of its origin but know that they tend to be protected and are not allowed to be sold in many countries. I am happy to see it is finally thriving...
Just like the end of the week is filled with elation and excitement for the time to be had with the family, the flip side is the weight of departure after the weekend. I know this all sounds a little melodramatic, but when kids miss you they let you know!
