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Medical Forum / Diseases and Disorders / Cancer / February 2008Just diagnosed, post-surgery
Hi all; Mine's kind of a twisted story, but I'm sure there are others out there who went through the same thing: A year and a half ago, I noticed my hearing in my right ear wasn't what it used to be. After procrastinating for months, 'cause I figured it was "just" impacted ear wax or "just" a cold, I went into the doctor's. After a bunch of "Hmm, that's interesting"s, they said there was a growth in my ear and they were sending me to an ENT. So off to the ENT in Pembroke (I live in NorthEastern Ontario, Canada), he tells me its Glomus Tympanicum, but he's seen it excactly once before - In med school - and he wasn't going to touch it (He said it more nicely than that - I'm paraphrasing) - So off to the ENT in Ottawa. So after some much delayed scans, X-Rays, MRI and CT, they tell me it's Glomus Jugulare - A non-malignant, non-cancerous tumour in the jugular foramen. Again, they say it's non malignant, non-cancerous; They're going to operate, just don't know when. Anyway, after a *year*, they operate and take the thing out. What was supposed to be a ten hour surgery ended up being 16 and a half hours. Getting through two weeks in the hospital was rough, to say the least; My facial nerve has a graft, 'cuz the tumour had infiltrated it thouroughly (so my right side of my face is completely dead), I couldn't swallow, because of the stretching of all the other nerves and a bunch of other things. To make a long story short(er), I learned to swallow, to the surprise of everyone in the hospital (No, Marc, you'll be going home with a G-Tube, but we have to give you a chance with the NG tube to see if you'll do it on your own, but don't count on it) and I got to go home. Have to take it easy for two months, no lifting of more than ten lbs, because of everything they did (Basically, opened my head and dug around with an ice cream scoop). So I had my follow-up with the ENT last Thursday. Expected to go in and have him say "You're doing great! I'll see you in six months". Instead, what he tells me is "Well, Mr Bissonnette, the reason it took so long for your operation is that the tumour you had was not only non-benign, it was very aggressive. We took out several lymph nodes, a bunch of bone and did a bunch of other stuff in there. Yes, it's cancer."(Again, I'm paraphrasing). Crap. Took it pretty well in the Dr's office. Had a couple of "moments" outside his office and in the car with my wife. He told me that this type of cancer is so bloody rare he couldn't personally think of another case excactly like it in Canada, from his recollection. I got my cancer package in the mail yesterday from the Ottawa hospital. Me. I got it. *I'm* not supposed to get this, someone else is. The Canadian Cancer Society is something you make up excuses for at the door, not something you suddenly look at for a life-line. (To be honest, though, while I may have never given money to Cancer.ca, the Terry Fox foundation has usually gotten a few dollars from me each year - Now there was a hero). This sucks. I have my first appointment with the cancer centre tomorrow. Me. Going to see an oncologist. I got lost in the cancer centre once taking my daughter to CHEO for her diabetes appointment. Now *I'm* going there. Sigh. Anyway; I'm not really a bitter person and I certainly don't complain a lot (My wife might tell you differently, but what she hears and what the world hears are two different things :) ) I've been a Usenet junkie for almost 20 years, now, though I don't think I ever checked alt.support.* for much, even though I have two special needs children out of three. I'll stop writing now, but I feel better for ranting :)  SignatureMarc Bissonnette Looking for a new ISP? http://www.canadianisp.com Largest ISP comparison site across Canada. > < gentle snip> > [quoted text clipped - 36 lines] > > I'll stop writing now, but I feel better for ranting :) Canadian ranters are highly valued around these parts. That's because Steph's a one-liner type of guy. Maybe he's heard of others with glomus jugulare. I've only heard of one - 3 or 4 years ago, on (these cancer) newsgroups and I think hers was benign. I"m happy to hear you've taught yourself to swallow. I could be wrong but your trip to Ottawa might be to evaluate you for radiotherapy. Which might mean that you'll need a mask fitting. I'm late for supper, so I'll close by saying "welcome, Marc" and I hope you'll rant here often. J >> < gentle snip> >> [quoted text clipped - 53 lines] > hope you'll rant here often. > J J, I bet Mard would enjoy Clifto. Where is Clifto? Fig > Where is Clifto? Other newsgroups. J they know each other from one of the 'admin' newsgroups don't know if they know they share this issue > > Where is Clifto? > > Other newsgroups. > J > they know each other from one of the 'admin' newsgroups > [quoted text clipped - 4 lines] >>Other newsgroups. >>J news.admin.net-abuse.email Signature*************************************** * This is the Spammish Inquisition * * Not Lumber Cartel Unit 75 [TINLC] * * I am not SPEWS.ORG * *************************************** >> < gentle snip> >> [quoted text clipped - 43 lines] > and I > think hers was benign. They are all benign. I treat 1 or two every couple of years. Not sure what this was, but it wasn't a g-j > I"m happy to hear you've taught yourself to swallow. > I could be wrong but your trip to Ottawa might be to evaluate you for [quoted text clipped - 4 lines] > you'll rant here often. > J > Hi all; > [quoted text clipped - 69 lines] > > I'll stop writing now, but I feel better for ranting :) Hi, Marc, It is just SO WRONG that this happened to you. And no one told you in hospital? From what you've said, it sounds like a freak thing. Many of us feel like we fell through the rabbit hole when given news like this. I hope things go well for you at the cancer center. Please keep us posted on how it goes & what they have planned for you. And, yes, you've found a good place to rant. Sometimes that helps a lot. We'll be here reading & caring about you. So post anytime! Hugs, Fig >> Hi all; >> [quoted text clipped - 74 lines] > It is just SO WRONG that this happened to you. And no one told you in > hospital? Frankly, I'm glad no one told me in the hospital; I had enough to deal with after the surgery with the NJ tube, learning to swallow (I'm phobic about choking, so the swallowing thing was a *big* deal - It felt like I was awake for ten days straight, even though I must have lost conciousness a few times in there) > From what you've said, it sounds like a freak thing. Many of > us feel like we fell through the rabbit hole when given news like this. Yeah, freak thing for sure. The doctors told me a gazillion times that this thing was benign. The ENT said the surgical team was shocked when they opened me up and it was cancerous. His words: Glomus Jugulare is *always* benign. > I hope things go well for you at the cancer center. Please keep us > posted on how it goes & what they have planned for you. And, yes, > you've found a good place to rant. Sometimes that helps a lot. > We'll be here reading & caring about you. So post anytime! I have a feeling you guys will be seeing a fair bit of me in this NG :) It *is* nice to know there are places where everyone has already been through *exactly* what you're going through :) SignatureMarc Bissonnette Looking for a new ISP? http://www.canadianisp.com Largest ISP comparison site across Canada. > Figgertoes <agent01413@my-deja.com> [..] > > It is just SO WRONG that this happened to you. And no one told you in [quoted text clipped - 13 lines] > they opened me up and it was cancerous. His words: Glomus Jugulare is > *always* benign. Steph, our oncologist, says they're benign, so maybe you misheard? Or it's something else? How did it go today, Marc ? J >> Figgertoes <agent01413@my-deja.com> [..] >> > It is just SO WRONG that this happened to you. And no one told you [quoted text clipped - 18 lines] > Or it's something else? > How did it go today, Marc ? It's definitely malignant. I've been dealing with this tumour for over a year now and a week ago, I would have agreed with your oncologist, saying they're only benign because that's what I've been told for a year. It turns out, though, they are benign 99.9% of the time. Apparantly, I've fallen into that 0.01% where it's *not* benign. In addition to the tumour spreading to lymph nodes in my neck, it invaded the facial nerve and took out a bunch of bone. Basically, they opened the right side of my head and went in there with an ice cream scoop. Went to the oncologist today, where I was *really* hoping to find more answers. His first statement was pretty much "I am going to be up front with you: We have zero knowledge of this cancer. By all definitions, Glomus Jugulare is a benign tumour, however yours, obviously, was not. I will talk to the hospitals in Toronto, Vancouver, Houston and Boston and we'll go from there". One of the surgeons was there and said he'd already taken out several lymph nodes, in addition to the tumour, in addition to a ton of bone. He also said there was a direct path to the brain no longer protected by bone, but because of it's location, it shouldn't be a problem, as long as I wear a helmet in all the things I *should* be wearing a helmet anyway (Biking, skiing, hockey, etc) So my case goes to grand rounds next week and I'm due back at the cancer center in six weeks. Because of my age (35), they're not super keen on radiation because of the side effects that *may* show up, twenty years from now. If I was 20 years older, they'd irradiate without a second thought, because I probably wouldn't live long enough to worry about side effects. That, though, will apparantly be my choice. That's one thing they repeated a few times today: Whatever they come back with in six weeks, they'll show it all to me and ask what I am prepared to do. He also said to be aware that there may *be* no specific answers for this particular cancer: If that's the case, he said we'll lay everything we *do* know out on the table and go from there. Not exactly the type of day I was hoping for, since I *really* wanted some answers today and not a specialist saying "We haven't the foggiest idea of what to do next" Other than that, the surgeon was quite pleased with the healing: Headaches are starting to hit me now, as things knit back together; There's still a lot of side effects from the nerve that was cut (facial nerve - grafted - right side of face completely dead) and a bunch of other nerves that were bruised and/or stretched. Those, at least, will come back with time. SignatureMarc Bissonnette Looking for a new ISP? http://www.canadianisp.com Largest ISP comparison site across Canada. Hi Marc, It's a common bad joke: "I'm not supposed to need cancer charities; I *give* to them." Do you have a copy yet of the pathology report on your cancer? That tells 90% percent of the story. You'll need the surgical report too, but right now the pathology report is far more important because the oncologist will base your treatment plan on it. This newsgroup can help you decode the pathology report. Hang in there. Una Well Marc, welcome to the Club, where the dues are extreme, most of the activities no fun at all, and the initiation ceremonies very disturbing, but the people are great. Welcome to the ASC, too, where the dues are zip, the activities supportive (and sometimes cathartic), the initiation ceremonies welcoming, and the people are great. You'll find plenty of support here and ready ears (eyes?) for ranting, etc., as well as a bit of the inanity and insanity common to the 'Net. I wish you well with recovery, and with treatment. --- CSM csm7532@hotmail.com got too close to a singularity. This was what came out the other side: news:92942645-5d3c-42f8-86cd- 74671eb207ba@v67g2000hse.googlegroups.com: > Well Marc, welcome to the Club, where the dues are extreme, most of > the activities no fun at all, and the initiation ceremonies very [quoted text clipped - 4 lines] > as well as a bit of the inanity and insanity common to the 'Net. I > wish you well with recovery, and with treatment. Not quite a club I ever wanted to join (no offense), but the welcome has been great :) One thing I`m more than a little tired of, though, is doctors and nurses telling me what I *should* be going through. For example, when I had the NJ tube in me (A *horrific* experience, for someone phobic about choking), I kept telling them I could taste the formula when they turned the pump on. `No, you`re not tasting formula, it`s just the temperature difference in your throat`, despite the fact I`d start choking on the stuff: It took my wife telling them to smell my breath ferheaven`s sake, you could *smell* the stuff as soon as they turned the pump on. Sure enough, the tube had worked it`s way up the throat. `No, no, this tumour isn`t cancerous`, well, we all know where that one went :) I swear, if I hear one more person tell me that Glomus Jugulare isn`t cancerous, I`ll offer to switch places with em: THEY can deal with the non- cancer in my head :) SignatureMarc Bissonnette Looking for a new ISP? http://www.canadianisp.com Largest ISP comparison site across Canada. Marc, I can relate to the benign / malignant insanity. My daughter had a rare tumor that is often described in textbooks as benign. It usually is benign, and before the mid 1990's if it was not benign there was little to be done if the first surgery did not "cure" it. So why scare the family, eh? But now the success rate with chemo is high *if* given soon enough. That requires close surveillance by someone who will look for and recognize early signs of a recurrent tumor. We had a little trouble finding someone like that. I tell you this because you too may have to deal with specialists who have certain blind spots. It sounds like you are in good hands: they are not experts in your specific kind of rare cancer, but they are ready to learn with you ... or from you. Like it or not, you are an important part of your medical team. http://en.wikipedia.org/wiki/Paraganglioma may be helpful; at least, if there is something you don't understand, you can ask about it on the article's talk page, the reference desk, or the "doctor's mess". The wikipedia article links to http://www.drtbalu.com/glomus.html, which says the usual delay in diagnosis is 6 to 15 years and has some typing systems. Those should help you interpret your surgical and pathology reports. Una > It sounds like you are in good hands: they are not experts in your > specific kind of rare cancer, but they are ready to learn with you [quoted text clipped - 8 lines] > typing systems. Those should help you interpret your surgical and > pathology reports. http://www.american-hearing.org/disorders/tumors/glomus_tumor.html http://bjr.birjournals.org/cgi/content/full/74/879/266 decision-making in metastatic paraganglioma http://www.bcm.edu/oto/grand/102691.html Therapeutic Options for Treatment of Glomus Tumors of the Temporal Bone http://www.utmb.edu/otoref/Grnds/paragang-9812/paragang-9812.html TITLE: Paragangliomas SOURCE: UTMB Dept. of Otolaryngology Grand Rounds http://www.chicagoear.com/med_info/glomus_jugulare.htm > Marc, I can relate to the benign / malignant insanity. My daughter > had a rare tumor that is often described in textbooks as benign. It [quoted text clipped - 19 lines] > typing systems. Those should help you interpret your surgical and > pathology reports. Those links were very helpful, thanks - Googling for stuff like this on your own is tiresome, to say the least, though I managed to find a decent PDF on the surgical technique before going in, which was helpful. Though I don`t have a whole lot of information on it right now, it seems to me that the feeling I get is that this cancer isn`t going to do a whole lot at this stage in life: The doctors certainly don`t seem overly worried in that there is no sense of urgency involved, which is nice, in a way: There`s still a *long* way to go in getting better from the hospital visit. If we *do* decide to go the radiation route, I would hope that my swallowing is at 100% before we start: The idea of losing it yet again is not exactly high on my list of things I`d like to do again this year :) SignatureMarc Bissonnette Looking for a new ISP? http://www.canadianisp.com Largest ISP comparison site across Canada. Marc: Have you thought of possibly consulting at a world famous clinic? Perhaps Mayo or MD Anderson? Mel >> Marc, I can relate to the benign / malignant insanity. My daughter >> had a rare tumor that is often described in textbooks as benign. It [quoted text clipped - 36 lines] > swallowing is at 100% before we start: The idea of losing it yet again is > not exactly high on my list of things I`d like to do again this year :) > Marc: > > Have you thought of possibly consulting at a world famous clinic? > > Perhaps Mayo or MD Anderson? The thought crossed my mind for about a millisecond, but I have three young children; One of whom has Angelman Syndrome (You can see/read more about him at http://www.armyofangels.org - That's his page) and the other has type I diabetes. To top it all off, while I am Canadian, which means the bulk of my health care is covered, I am also self-employed, which means absolutely zero insurance; Going outside of the country just for my needs just isn't fiscally possible :( >>> Marc, I can relate to the benign / malignant insanity. My daughter >>> had a rare tumor that is often described in textbooks as benign. It [quoted text clipped - 38 lines] >> again is not exactly high on my list of things I`d like to do again >> this year :) SignatureMarc Bissonnette Looking for a new ISP? http://www.canadianisp.com Largest ISP comparison site across Canada. >> Have you thought of possibly consulting at a world famous clinic? >> Perhaps Mayo or MD Anderson? > The thought crossed my mind for about a millisecond, but I have three > young children; One of whom has Angelman Syndrome (You can see/read more [quoted text clipped - 3 lines] > means absolutely zero insurance; Going outside of the country just for my > needs just isn't fiscally possible :( Even though you may be tied to staying in Canada, is there someone in Canada with any or more experience with your condition than your current team? Do you have to stay with your current team/hospital/province or can you go elsewhere in Canada? Have your doctors consulted by phone with experts anywhere else, & not just in Canada? bj Marc, MZB and bj are correct, you need a consultation with a specialist in postoperative treatment of this kind of tumor. Consults on very rare tumors often are international and often at no charge. In most cases you don't need to go there in person. You send all your reports, all images (these will be in the form of a digital library on a CD), and possibly also pathology slides (pieces of glass with preserved bits of your tumor on them). You would get back a phone call, an e-mail, or a letter, plus the slides. You can ask your physicians to do this but if they don't jump on it I suggest you do it yourself. Have you searched www.cancer.gov yet? That's a very important site. There are 26 hits for "paraganglioma", some of which may be important to you. See especially Adult Brain Tumors Treatment. The site also has a referral service. You can also use PubMed to identify who are the specialists, and write to them directly. Una > Marc, > [quoted text clipped - 15 lines] > has a referral service. You can also use PubMed to identify who are > the specialists, and write to them directly. Thanks, Una & BJ; The process right now is very early; I'm not angry at the cancer centre, because it's not like they've mis treated me; They said upfront that they hadn't dealt with this before: They're making the calls to Toronto, Vancouver, Houston and Boston, so I won't jump the gun before I hear back from them. Depending on their answers (or lack thereof), I might be seeking a different route of treatment, but I'm going to give them a chance first :) SignatureMarc Bissonnette Looking for a new ISP? http://www.canadianisp.com Largest ISP comparison site across Canada. Seeking a second opinion is for due diligence and self education; it has nothing to do with lack of confidence in your current team, nor anger nor disloyalty. Una > > Marc: > > [quoted text clipped - 9 lines] > means absolutely zero insurance; Going outside of the country just for my > needs just isn't fiscally possible :( No complaints from Ottawa, that I can recall and I've been here for many years. Have confidence. They're doing the right thing by consulting with Toronto, Boston and Vancouver. J > > Marc: > > [quoted text clipped - 9 lines] > means absolutely zero insurance; Going outside of the country just for my > needs just isn't fiscally possible :( If there's anything needing doing, not available in Ontario, the government will pay for it. Whether done in another Province or the US. J >> > Marc: >> > [quoted text clipped - 15 lines] > Whether done in another Province or the US. > J In addition, any treatment he needs in Ottawa will be as good as anywhere in the world, and better than most places. > "J" <nswex@nalid;non> wrote in message > > [quoted text clipped - 20 lines] > In addition, any treatment he needs in Ottawa will be as good as anywhere in > the world, and better than most places. Indeed. No doubt. J > If we *do* decide to go the radiation route, I would hope that my > swallowing is at 100% before we start: Best call them and find out if you should get a dental appointment. Might be a name and phone number in the package that they sent you, for your questions. If they have names of some dentists in Otawa, that would be helpful as well. If they say (later) that radiotherapy should be done right away, you don't want that delayed by finding an experienced dentist and potentially multiple appointments. J >> If we *do* decide to go the radiation route, I would hope that my >> swallowing is at 100% before we start: [quoted text clipped - 5 lines] > be done right away, you don't want that delayed by finding an > experienced dentist and potentially multiple appointments. A *dental* appointment ? SignatureMarc Bissonnette Looking for a new ISP? http://www.canadianisp.com Largest ISP comparison site across Canada. > >> If we *do* decide to go the radiation route, I would hope that my > >> swallowing is at 100% before we start: [quoted text clipped - 7 lines] > > A *dental* appointment ? *shrug* I don't have your scans nor your head and neck in front me to see where the tumor was and where the involved bone was removed. I warn H&N people so there's no delay. No teeth? There's some reading here and on the link there too. < http://groups.google.com/group/alt.support.cancer/msg/c53835af1ecee99d > Wait for Steph - maybe I'm barking up the wrong tree. :-) J >> >> If we *do* decide to go the radiation route, I would hope that my >> >> swallowing is at 100% before we start: [quoted text clipped - 16 lines] > < http://groups.google.com/group/alt.support.cancer/msg/c53835af1ecee99 > d > Wait for Steph - maybe I'm barking up the wrong tree. :-) Oh, no, nothing impacted the teeth. The tumour was in the jugular foramen - A lot of the mastoid and temporal bone was removed. Apparantly, there is a pathway to the brain, now, not protected by any bone, though the doc says due to it's location and shape of the skull, there isn't a whole lot of risk involved. Next appointment with the cancer center is the 14th, so hopefully, there will be more answers, then. Threw me for a loop with the dental reference, but I see where you're coming from, now :) SignatureMarc Bissonnette Looking for a new ISP? http://www.canadianisp.com Largest ISP comparison site across Canada. > >> >> If we *do* decide to go the radiation route, I would hope that my > >> >> swallowing is at 100% before we start: [quoted text clipped - 28 lines] > Threw me for a loop with the dental reference, but I see where you're > coming from, now :) I'm not sure you do, marc so I hope a radiation oncologist will be at the appointment to advise. And this might be moot anyway, if they decide no RT in the near future. J Marc wrote: >> Threw me for a loop with the dental reference, but I see where you're >> coming from, now :) >I'm not sure you do, marc so I hope a radiation oncologist will be at the >appointment to advise. Ditto. Here's a link that may be useful: http://www.nidcr.nih.gov/HealthInformation/DiseasesAndConditions/CancerTreatment AndOralHealth/ReferenceGuideOncologyPatients.htm Una > >> >> If we *do* decide to go the radiation route, I would hope that my > >> >> swallowing is at 100% before we start: [quoted text clipped - 28 lines] > Threw me for a loop with the dental reference, but I see where you're > coming from, now :) Good luck tomorrow, Marc. Let us know how it goes, please. J >> >> >> If we *do* decide to go the radiation route, I would hope that >> >> >> my swallowing is at 100% before we start: [quoted text clipped - 31 lines] > Good luck tomorrow, Marc. > Let us know how it goes, please. Thanks, J; They called last week and delayed it to the 21st, so one more week of waiting to see what the heck is going on inside of my head :( The nerve damage from the surgery seems to be getting worse and not better, but the surgeon says it's just a matter of time before it heals - Till then, I'll just keep on doing my "old man" routine :) SignatureMarc Bissonnette Looking for a new ISP? http://www.canadianisp.com Largest ISP comparison site across Canada. > >> >> >> If we *do* decide to go the radiation route, I would hope that > >> >> >> my swallowing is at 100% before we start: [quoted text clipped - 38 lines] > better, but the surgeon says it's just a matter of time before it heals - > Till then, I'll just keep on doing my "old man" routine :) Thanks Marc for the new date. Are you sleeping on the affected side? (what position is your head in, while sleeping?) J >> >> >> >> If we *do* decide to go the radiation route, I would hope >> >> >> >> that my swallowing is at 100% before we start: [quoted text clipped - 44 lines] > Are you sleeping on the affected side? (what position is your head in, > while sleeping?) I usually sleep on my back, so I don't think that's what's causing it. I drove from Ottawa the other day (~180km) and I usually drive with my right hand @12:00 - I got as far as Arnprior and I thought my shoulder was going to fall off, it got so bad. Fortunately, my wife was with me and we switched off at Timmy's. I'll see if I can get an appointment with the surgeon when I'm back in there to get some answers with regards to the 11'th nerve. It's annoying, to make a massive understatement. SignatureMarc Bissonnette Looking for a new ISP? http://www.canadianisp.com Largest ISP comparison site across Canada. > >> The nerve damage from the surgery seems to be getting worse and not > >> better, but the surgeon says it's just a matter of time before it [quoted text clipped - 7 lines] > drove from Ottawa the other day (~180km) and I usually drive with my > right hand @12:00 Soulder goes numb? You usually drive with your right hand @12:00 because ? I could never drive like that. My hands are at 10 and 2 o'clock. 12:00 is good for a (arm/shoulder) stretch but then back to 10 and 2 o'clock. I realize seat positions, body sizes, steering sizes and angles, and seat heigth enter into the most comfortable way to drive, but just wondering why your drive like that? > - I got as far as Arnprior and I thought my shoulder > was going to fall off, it got so bad. Fortunately, my wife was with me > and we switched off at Timmy's. I'll see if I can get an appointment with > the surgeon when I'm back in there to get some answers with regards to > the 11'th nerve. It's annoying, to make a massive understatement. You want to make sure something else isn't causing it? http://archotol.ama-assn.org/cgi/content/abstract/119/2/215 The 11th nerve syndrome. Accessory nerve palsy or adhesive capsulitis? If they can take the time to press in various places to recreate the numbness, might be quick way to know where the problems's coming from. Make sure you them the position you're driving in. J >> >> The nerve damage from the surgery seems to be getting worse and >> >> not better, but the surgeon says it's just a matter of time before [quoted text clipped - 11 lines] > Soulder goes numb? > You usually drive with your right hand @12:00 because ? Most comfortable. > I could never drive like that. My hands are at 10 and 2 o'clock. > 12:00 is good for a (arm/shoulder) stretch but then back to 10 and 2 [quoted text clipped - 3 lines] > seat heigth enter into the most comfortable way to drive, but just > wondering why your drive like that? Just most comfortable :) >> - I got as far as Arnprior and I thought my shoulder >> was going to fall off, it got so bad. Fortunately, my wife was with [quoted text clipped - 10 lines] > numbness, might be quick way to know where the problems's coming from. > Make sure you them the position you're driving in. The 11th nerve was stretched during surgery, so I knew ahead of time that right arm/shoulder issues may arise - It's just annoying that it seems to be getting worse than better. SignatureMarc Bissonnette Looking for a new ISP? http://www.canadianisp.com Largest ISP comparison site across Canada. > >> >> The nerve damage from the surgery seems to be getting worse and > >> >> not better, but the surgeon says it's just a matter of time before [quoted text clipped - 29 lines] > right arm/shoulder issues may arise - It's just annoying that it seems to > be getting worse than better. Hi Marc, I lied, I've realized. I do drive with the hand @ 12 but I prefer 10 and 2 for more control of an automatic. I've read up on the accessory nerves at wikipedia, so will be interested in what the surgeon says. Just a few more days until you get the biopsy results. I'd like to be a fly on that wall. :) Take care and drive safe. J >> >> >> The nerve damage from the surgery seems to be getting worse and >> >> >> not better, but the surgeon says it's just a matter of time [quoted text clipped - 40 lines] > a fly on that wall. :) > Take care and drive safe. No kidding :) It's been an interesting month in my head :) I get the news that I'm recovering from major surgery amazingly well That's good. I get the news that I have cancer. That's bad. I get the news that I'll be around to see my grandkids (I'm 35) That's good. I get the news that they've never seen this cancer in Ottawa and can't find any cases in Canada. That's bad. I get a follow-up appointment three weeks sooner than expected. That's good. I get the appointment delayed by a week. That's frustrating :) I've always been a strong believer in the fact that everything happens for a reason and the butterfly effect. The news of cancer has shown me that the small village I live in is filled with absolutely amazing people. It's also given me a lot of time to reflect on myself and my life. It's funny, though, how sometimes the smallest little thing can make a difference. It was Figgertoes (I finally googled it to see who made such a difference) who said "When you 'play the cancer card', try to be honest about it. Think about what it's like on the other side. No one said this was easy." - That made a real impact. Not just on 'playing the cancer card', but also in trying to make up for the things I cannot do now post-surgery. I'm not a perfect house-husband by a long shot, but I'm trying. I was thinking about that about 20 minutes ago when I finally put a new windshield wiper blade on the truck for my wife - I've only put that off by two months :) SignatureMarc Bissonnette Looking for a new ISP? http://www.canadianisp.com Largest ISP comparison site across Canada. > [...] > > Just a few more days until you get the biopsy results. I'd like to be [quoted text clipped - 16 lines] > I get the appointment delayed by a week. > That's frustrating :) Where oh where is Marc...with an update. > I've always been a strong believer in the fact that everything happens > for a reason and the butterfly effect. The news of cancer has shown me [quoted text clipped - 12 lines] > windshield wiper blade on the truck for my wife - I've only put that off > by two months :) Better than 2 years :) J - watching for your return. >> [...] >> > Just a few more days until you get the biopsy results. I'd like to [quoted text clipped - 18 lines] > > Where oh where is Marc...with an update. Just got in about half an hour now :) Okay, I feel a little better about things now, as I have more information, sort of. He said he called Toronto and Victoria and the consensus of his colleagues in those hospitals, as well as their research teams, I am, apparantly, the first and only Canadian with this particular cancer in this particular location, etc, etc, so on and so forth. So my initial inclination had been to decline the radiation and take the wait and see position. This was for two reasons; 1) the ENT said that he felt it was a slow-moving cancer and there was a chance it might not spread at all; 2) Radiation would affect swallowing and I have real issues with that - When I woke up from surgery, I couldn't swallow and spent three weeks with an NG tube. "Unpleasant" would be a massive understatement, but given the nerves to the throat simply weren't transmitting information, there was nothing else that could be done. New information from today: The base of the tumour was in the temporal bone: Ergo, there are still cancerous elements within the bone itself. If the cancer flares up again (I.e. if I take the wait and see attitude), it's likely path(s) are either through the rest of the skull, into the brain, or both. Since removing the skull and removing the brain aren't exeactly surgical options, preventative medicine seems like the best course. Second piece of new information (or rather, better understanding on my part)- Turns out the the possibility of swallowing issues from the radiation are because of pain involved from the swelling due to radiation hitting the throat - *not* neurological control: That is *such* a relief. I can handle pain. If I've got to take pain killers, I can do that, too - If all the swallowing issues are is that it's going to hurt like a sonofagun, that's fine - it doesn't mean I can choke on my own saliva like post-surgery :) So, though he offered to let me go home and think about it for a few days, since he had answered my questions about where the cancer was, what kind it was, what the percentages and types of side effects were, I opted on the spot to go ahead with the radiation - So it's going to be six weeks of being a self-powered flashlight head for me. I'm to go in in a couple of weeks for the skull mask fitting for the funky focused radiation machine and (you were right, J), I've got to see the dentist in oncology, as well :) My mom, an RN of 30 years, also went with me today: We got the pathology report, but I let her keep it so she could make copies to get other opinions from her colleagues at work - She's going to have it scanned and emailed to me tomorrow, so I'll be able to post more from that, then. I did read through it and saw that there were lots of bits of bone and tissue sent off to the lab and lots of "positive for malignant paraganglioma" and a few other terms that were new to me. I'll post a copy on the web somewhere and put up the URL when I do so, if some of you have the time to kindly look through it and share your experience/wisdom on it's contents. My best friend also took me out to dinner after the appointment, who himself has recently suffered a massive stroke; At the risk of sounding oddly morbid, we had more than a few laughs trying to "out gimp" each other, what with his brain damage and my cancer. What the hell, right ? If you can't find some laughter in all of this, your foot's already in the grave. Speaking of graves, the oncologist confirmed the ENT's original assessment that I'll be around to see my grandkids, so that was comforting. (Though yes, I did indeed get all the other warnings about percentages of flare ups, radiation-related cancers and complications, etc) SignatureMarc Bissonnette Looking for a new ISP? http://www.canadianisp.com Largest ISP comparison site across Canada. > Speaking of graves, the oncologist confirmed the ENT's original > assessment that I'll be around to see my grandkids, so that was > comforting. (Though yes, I did indeed get all the other warnings about > percentages of flare ups, radiation-related cancers and complications, > etc) Short reply for now. Pain may be an understatement. Projects for you: 1) See recipes post, go to web sites, print them up. The BC Cancer Agency Adobe also mentions some booklets. - call Ottawa to learn if they also have some similar ones. Ask they be mailed or have friend pick them up and send to you. 2) < http://www.bccancer.bc.ca/HPI/CancerManagementGuidelines/HeadnNeck/Dentistry/Pat ientsFollowingRadiationTherapy+.htm Print up the following: Section 5, 6, 7, 8, 11, 12, and < http://www.bccancer.bc.ca/HPI/CancerManagementGuidelines/HeadnNeck/Dentistry/How WillRadiationAffectMyTeeth.htm and the new post called "Cares for mouth, throat, nose (cancer and/or side effects of treatments) " Do not go out and buy all of that - (Items listed there) to be discussed when you go in for mask fitting. As to what they think you might need. If they don't provide or ti's too far to drive, start looking in local drug stores. See: http://www.ottawahospital.on.ca/patient/visit/clinics/dental-e.asp Also ask about < http://groups.google.com/group/alt.support.cancer/msg/c53835af1ecee99d> plastic trays that fit one's teeth that hold the Fluoride gel. Everyone I've met who has had RO to the H&N uses these trays nightly.The length of time, I belive, varies according to docs. I use mine for 10 minutes every night. H&N radiation patients are known to have more than their share of dental problems after rads ------------------------------------------------------------------------------------------------ That will keep you busy and out of trouble until I return. :) J >> Speaking of graves, the oncologist confirmed the ENT's original >> assessment that I'll be around to see my grandkids, so that was [quoted text clipped - 46 lines] > That will keep you busy and out of trouble until I return. :) > J Many thanks, J; I will indeed read up on all of the above, but after I have a nap: Spent the day in Ottawa yesterday @ oncology and then again today, but to drive a friend to the airport (We're about 180KM from Ottawa) - I see Zeds in my immediate future :) Thanks again! SignatureMarc Bissonnette Looking for a new ISP? http://www.canadianisp.com Largest ISP comparison site across Canada. > > Projects for you: > > [quoted text clipped - 10 lines] > > Thanks again! Okay Marc, Giving you time to catch up. J > Second piece of new information (or rather, better understanding on my > part)- Turns out the the possibility of swallowing issues from the [quoted text clipped - 13 lines] > radiation machine and (you were right, J), I've got to see the dentist in > oncology, as well :) Costs are not all covered http://www.ottawahospital.on.ca/patient/visit/clinics/dental-e.asp Does your insurance cover? If not, see last line of this post. Are your travel costs covered? (reimbursed?) If not, see last line of this post. Keep a log of each trip to medics; who, when, why, how; date, # of km's - add 9% for variables/then double for return= total km's, and parking receipts list by date, starting February 1st. (prescription) Antibiotics, antifungals, and some pain medications are covered by your insurance? If not, see last line of this post. Co-pays, see last line of this post. I posted a list of "cares", (some of) they may help on an as needed basis. i know of ways and means to maybe get covered. Email me at callforvotes at yahoo dot ca (fix the obvious) J > JSo, though he offered to let me go home and think about it for a few > days, since he had answered my questions about where the cancer was, what [quoted text clipped - 4 lines] > radiation machine and (you were right, J), I've got to see the dentist in > oncology, as well :) 1) How many sessions weekly? 2) When's the dental? In my mind, that should get started immediately so you're ready to start treatment after the mask fitting. 3) So (investigating) the bureaucracy /paperwork I sent you is high priority > My mom, an RN of 30 years, also went with me today: We got the pathology > report, but I let her keep it so she could make copies to get other [quoted text clipped - 6 lines] > have the time to kindly look through it and share your experience/wisdom > on it's contents. I would be interested and probably Steph as well. However, other priorities first AND please post the link to sci.med.diseases.cancer. That's because "complete strangers" have wanted to post scans or path reports here for diagnostic purposes and I don't feel this is the right place for that. (some aren't cancer patients). So all should be handled on sci.med.diseases.cancer (if the doctors there care to comment), if you don't mind. But please see to "bureaucracy" first, so you can get moving on required appointments to various doctors, dentists etc. J >> JSo, though he offered to let me go home and think about it for a few >> days, since he had answered my questions about where the cancer was, [quoted text clipped - 6 lines] > > 1) How many sessions weekly? It is my understanding that it will be once a day, Monday to Friday, for six weeks. > 2) When's the dental? In my mind, that should get started immediately The oncology nurse said that would be the first step - She told me to expect a call in the next couple of weeks. From what I understand, everything's supposed to be underway within a month. > so you're ready to start treatment after the mask fitting. > 3) So (investigating) the bureaucracy /paperwork I sent you is high > priority Absolutely; Given the cost of dental stuff, I don't envy the idea of trying to pay for it myself. >> My mom, an RN of 30 years, also went with me today: We got the >> pathology report, but I let her keep it so she could make copies to [quoted text clipped - 15 lines] > handled on sci.med.diseases.cancer (if the doctors there care to > comment), if you don't mind. Will do: Got the scan from my mother this morning - I'll transcribe it to HTML and post it tonight. > But please see to "bureaucracy" first, so you can get moving on > required appointments to various doctors, dentists etc. > J Thanks again, J! SignatureMarc Bissonnette Looking for a new ISP? http://www.canadianisp.com Largest ISP comparison site across Canada. > >> JSo, though he offered to let me go home and think about it for a few > >> days, since he had answered my questions about where the cancer was, [quoted text clipped - 24 lines] > > >> My mom, an RN of 30 years, also went with me today: You'll be in good hands, seems to me, if your mother's going to be around, as well, during treatment. Thanks for the info, Marc. I know you're very busy. This thread's been going for 6 weeks. Might be an idea to start a new one "Post Surgery Treatment " or "RT treatment? The reason is that long threads go "next" in the Google archives. We're not obligated to serve people who use only Google. However, at least one Head and Necker uses Google - Ipunty. He may (or may not) have input should questions arise. Each head and necker had individual differences, some surgery, some not, some chemo, some not. Locations vary, some lymph node dissections which I don't think you had. Just a suggestion. :-) about starting a new topic. Thanks for the information - very helpful. Take care and "see you" when you have time. J > Thanks again, J! Marc, I should have pointed you to this http://www.cancersupportivecare.com/drug.php#what I think that Jenet, possibly others said that salt and baking soda helped a lot. There's products there that, when combined, equate to what Steph recomments.(for pain) and might be the best to use to show your GP and mother. and for the bureaucracy. http://www.talkaboutsupport.com/group/alt.support.cancer/messages/144679.html "liquid mixture of nystatin, viscous xylocaine and an anti-inflammatory " (swish, gargle and/or swallow) I know from personal experience that opoids don't help very much with inflammatory pain and there's also the problem of possible constipation, obstruction and perforation of the bowel, so the more help you get from other products the better. Also under "Mucositis" - thick mucous, I only have Cold fizzy club soda, Swill it, gargle it, spit it out on the list that I post. http://www.cancersupportivecare.com/drug.php#what has similar and other suggestions, so print it up. You may not have the problem; it's plan for worse, but may not happen. :) J Marc, re your choking. Do you have chronic difficulty swallowing? That is one symptom of glomus jugulare mentioned on http://en.wikipedia.org/wiki/Paraganglioma . Una > Marc, re your choking. Do you have chronic difficulty swallowing? > That is one symptom of glomus jugulare mentioned on > http://en.wikipedia.org/wiki/Paraganglioma . Yeah, when I woke up from the surgery, I couldn`t swallow at all; Food and saliva would go halfway down my throat then just stop. They said they`d give me three weeks with the NJ tube then they`d put a G tube in - I`d be damned if I was leaving that hospital with tubes coming out of me, so I worked on those ice chips every two hours until I could finally swallow some. Spent a week with puréed foods, then got discharged, at my urging. I can mostly swallow now, though I always have liquid with me, in case something gets stuck. That`s one thing I learned about the radiation yesterday: It may affect my swallowing *again*. Sigh. SignatureMarc Bissonnette Looking for a new ISP? http://www.canadianisp.com Largest ISP comparison site across Canada. Marc, what I am getting at is that your tumor could have been present and causing symptoms (hence your choking phobia) for most of your life. A small French study (just 29 patients; PMID 17987308) found diagnosis of this tumor at a relatively young age is highly correlated with inherited genetic mutation and with multiple foci of tumor. (On the other hand, the family history and/or higher likelihood of clinical signs given multiple tumors may have contributed to an earlier diagnosis.) Have your doctors asked about family history? Offered genetic counseling? Una > Marc, what I am getting at is that your tumor could have been present > and causing symptoms (hence your choking phobia) for most of your [quoted text clipped - 9 lines] > Have your doctors asked about family history? Offered genetic > counseling? They`ve asked about family history, of which there is none - Not even a case of skin cancer in either side of the family - Doctor said that this kind of cancer showing up in me was literally a freak accident. (I have a son with Angelman Syndrome - Another completely freak accident and a daughter with type I diabetes, which is now looking like it comes from the mother`s side, since my brother in law literally was diagnosed *yesterday* with type I diabetes) No symptoms over life insofar as I know - Not sure where the phobia comes from, it`s just one of those things. Can`t think of any particularly traumatic incident in my life to cause it, either. I am an on-call firefighter, but haven`t been involved in any really heavy chemical fires or anything like that. Weird, weird stuff. SignatureMarc Bissonnette Looking for a new ISP? http://www.canadianisp.com Largest ISP comparison site across Canada. > csm7532@hotmail.com got too close to a singularity. This was what came out > the other side: news:92942645-5d3c-42f8-86cd- [quoted text clipped - 31 lines] > non- > cancer in my head :) There are very rare malignant paragangliomas which may present like a G-J The term G-J should really be reserved for the real thing, however. By the way, I really can't understand the reluctance to radiate a malignant tumour because you are young. What is the alternative? >> csm7532@hotmail.com got too close to a singularity. This was what >> came out the other side: news:92942645-5d3c-42f8-86cd- [quoted text clipped - 40 lines] > By the way, I really can't understand the reluctance to radiate a > malignant tumour because you are young. What is the alternative? Well, they`ve surgically removed the tumour and a lot of surrounding structures and tissue. So the issue now is the leftover malignant cells, which they say they can`t see, but they`re sure are still there. He said it was an issue I needed to be aware of in order to make a decision. I`m not overly comfortable in radiation, if it`s going to mean a possibility of more cancer in a decade or two. We`ll have to see what they say when they come back in six weeks :/ SignatureMarc Bissonnette Looking for a new ISP? http://www.canadianisp.com Largest ISP comparison site across Canada. >>> csm7532@hotmail.com got too close to a singularity. This was what >>> came out the other side: news:92942645-5d3c-42f8-86cd- [quoted text clipped - 48 lines] > of more cancer in a decade or two. We`ll have to see what they say when > they come back in six weeks :/ You're thinking about it wrong. The question is not the very small risk from the RT, it's whether the risk from recurrence is higher...which it undoubtedly is. A recurrence would very likely not be curable. The risk of a second cancer is less than 1% From just a quick look at abstracts of medical articles, I would say radiation after surgery is a judgement call because this kind of tumor is not very sensitive to radiation. Higher on my priority list would be an MRI with contrast to rule out additional tumors and to provide a post-op baseline for your future surveillance MRIs. Although your tumor was invasive, the good news is that this kind of tumor is *very* rarely metastatic and grows slowly. Una > From just a quick look at abstracts of medical articles, I would say > radiation after surgery is a judgement call because this kind of tumor [quoted text clipped - 4 lines] > Although your tumor was invasive, the good news is that this kind of > tumor is *very* rarely metastatic and grows slowly. Well, though he did say it was malignant, he also said it grows slowly, thus the time we seem to have in order to make decisions. I`ve asked for the surgery and pathology report, so now I just have to wait for them to come in the mail, after signing off on the privacy things. All in all, it seems that things could have been worse, which is a good thing, I guess. SignatureMarc Bissonnette Looking for a new ISP? http://www.canadianisp.com Largest ISP comparison site across Canada. The terms "benign" and "malignant" make it sound like there is a clear distinction between them, but often the situation is more complex. Malignant can mean any of three things: 1. local growth that is "aggressive" (very rapidly growing very large) 2. invasion of adjacent organs 3. metastasis Una > The terms "benign" and "malignant" make it sound like there is a clear > distinction between them, but often the situation is more complex. [quoted text clipped - 3 lines] > 2. invasion of adjacent organs > 3. metastasis Well, the fact that he used metastasis, malignant and cancer altogether, mixed with me being a patient of the cancer centre pretty much sums it up for me. Ottawa Civic isn't exactly a backwoods country hospital :) SignatureMarc Bissonnette Looking for a new ISP? http://www.canadianisp.com Largest ISP comparison site across Canada. >> The terms "benign" and "malignant" make it sound like there is a >> clear distinction between them, but often the situation is more [quoted text clipped - 11 lines] > > Ottawa Civic isn't exactly a backwoods country hospital :) Just a follow up, as I thought of something else: >> 1. local growth that is "aggressive" (very rapidly growing very >> large) This thing grew slowly until it seemed to hit a critical mass, then went nuts in a period of less than six months (I.e. minor hearing loss was the only side-effect in March to facial paralysis in September) >> 2. invasion of adjacent organs It had spread to multiple lymph nodes and ate away at the mastoid and temporal bones. Part of my brain is exposed (I.e. not covered by bone, but is covered by a lot of muscle and other tissue. In other words, wear a helmet when I should be wearing a helmet) >> 3. metastasis That's what the pathology report said, thus the trip to the cancer centre. SignatureMarc Bissonnette Looking for a new ISP? http://www.canadianisp.com Largest ISP comparison site across Canada. Una wrote: >>> 1. local growth that is "aggressive" (very rapidly growing very >>> large) >This thing grew slowly until it seemed to hit a critical mass, then went >nuts in a period of less than six months (I.e. minor hearing loss was the >only side-effect in March to facial paralysis in September) You had an explosion of symptoms, but that does not necessarily mean an explosion of growth rate. Growth rate refers to the size of the tumor, as measured by hand or by imaging. >>> 2. invasion of adjacent organs > [quoted text clipped - 6 lines] > >That's what the pathology report said, thus the trip to the cancer centre. Yes. There is your metastasis: "spread to multiple lymph nodes" Sorry. So, exactly what is the plan for radiation? How much, to what part(s) of your body? Or, maybe I should back up. What do you want from this ng? A place to vent, or answers to questions, or probing that brings up stuff you have not yet begun to think about? Una > Una wrote: >>>> 1. local growth that is "aggressive" (very rapidly growing very [quoted text clipped - 26 lines] > So, exactly what is the plan for radiation? How much, to what part(s) > of your body? We're not sure, yet, other than they would do a stereotactic treatment because of it's proximity to the brain (and additional concerns about side effects) - The initial thought was once a day for six weeks, now they're not sure because even the cancer centre isn't familiar with treatment for this. > Or, maybe I should back up. What do you want from this ng? A place > to vent, or answers to questions, or probing that brings up stuff you > have not yet begun to think about? I think you nailed all three of my primary needs :) Honestly, though, I can't see the need to vent anymore unless further stupidities arise with treatment/experience (Which wouldn't surprise me). While quite a few locals have cancer stories, they all seem to be doom and gloom ones ("My uncle had cancer and he only lived for three agonizing months", etc). I'm hoping to see some information within this NG that is a little broader- based in experiences. SignatureMarc Bissonnette Looking for a new ISP? http://www.canadianisp.com Largest ISP comparison site across Canada. > I think you nailed all three of my primary needs :) Honestly, though, I > can't see the need to vent anymore unless further stupidities arise with [quoted text clipped - 3 lines] > hoping to see some information within this NG that is a little broader- > based in experiences. My father was cured of colon cancer. Unfortunately not all my relatives were so lucky. Many of the people (from newsgroups), who are cured have moved on with their lives. Some come back to report their successes. Actually, in real life as well. I see some on other newsgroups. I think you'll feel better after the next meeting and have a plan of action under your belt. J >> I think you nailed all three of my primary needs :) Honestly, though, >> I can't see the need to vent anymore unless further stupidities arise [quoted text clipped - 14 lines] > I think you'll feel better after the next meeting and have a plan of > action under your belt. Agreed; That's why I was a little disappointed this time around, because that's what I was hoping to get right away: Information and a plan of action. On the plus side, there doesn't feel to be any sense of urgency on the docs' side, so I'm okay with waiting until the next meeting. 'Course, I live in a very small village, so now I get to deal with the "OMG, Marc's got cancer!" effect in a fishbowl. Life could be worse. (Don't get me wrong, though: The village has been great; I'm glad this happened while living here rather than Toronto or Ottawa) SignatureMarc Bissonnette Looking for a new ISP? http://www.canadianisp.com Largest ISP comparison site across Canada. >> Una wrote: >>>>> 1. local growth that is "aggressive" (very rapidly growing very [quoted text clipped - 45 lines] > months", etc). I'm hoping to see some information within this NG that > is a little broader- based in experiences. OK, my late husband was known as Socks the Whitehouse Cat here. Prognosis on diagnosis with NSCLC was 6-18 months. He actually lived more than 4 years, completed hs Master's degree, completed an MS 150 bicycle ride, taught a few college courses, did a lot of volunteer work, & helped get Colorado's non-smoking legislation passed. He took so many trips domestically & abroad that I cannot count them, we threw many parties & had a number given for him. He fully participated in life until the last couple of months & attended a Denver Broncos football game a couple of weeks before his death. I hope you do even better than that. I hope you have a good shot at full recovery. My advice: try to keep something wonderful, a treat, scheduled a month or so out. As your treatemnt progresses, you may see a pattern in how you will feel when, Socks did, & we knew exactly when to schedule trips & other things to maximize his enjoyment. We tried to keep things pretty normal, except, of course, he could not work as he had before. Family & friends are important. Spiritual connections can be important. Some things may have to slide while you are looking after your health. Oh, the doom/gloom folks - hey, this is where it's an advantage that your cancer is very rare - no one can say his brother had exactly what you have & he died. Fig >>> Una wrote: >>>>>> 1. local growth that is "aggressive" (very rapidly growing very [quoted text clipped - 69 lines] > your cancer is very rare - no one can say his brother had exactly what > you have & he died. :) Agreed with the last part :) My wife gave me some sh** today; Last night I went with a friend, who's a long-haul truck driver, to a delivery at National Grocer's: I wanted to see what a truck driver's life was like from this side and it was perfect, given it was such a short run. Well, it took about 13 hours, given all the wait times, et al, but well worth it: I had a good time, got to see something I hadn't seen before. Wife gives me poop today because my son's got a swimming lesson tomorrow (He's wheelchair bound, so swimming is a big deal for him) - I said I woulnd't go: I'm just too tired from yesterday. She figures that since I was out all night yesterday, must mean I'm ready to go for a day tomorrow. Sigh. SignatureMarc Bissonnette Looking for a new ISP? http://www.canadianisp.com Largest ISP comparison site across Canada. >>>> Una wrote: >>>>>>> 1. local growth that is "aggressive" (very rapidly growing very [quoted text clipped - 84 lines] > was out all night yesterday, must mean I'm ready to go for a day > tomorrow. Sigh. Sounds like a balancing act & your special needs kids add another dimension. Is your wife getting support? Does she have somewhere to vent? I don't know your usual routine/division of responsibility is. When cancer gets added to the mix, there's plenty of opportunity for guilt &/or resentment to build up on both sides. Your wife may have feelings/concerns she is not expressing to you. They may come out in other ways. If you haven't made one before, now may be a good time to make a planning calendar. You enter your appointments, treatments, anticipated down times & you both enter what needs to be done & who is to do it. We happened to have 3 of those white board types with only the days of the week on them. We taped them to a door & kept the months rotating, erasing as we went. Semi color coded. Socks got a form of chemo brain where he couldn't remember where to be when. This helped him remain more independent. If radiation makes you tired, you will be glad you have a simple reference. When you 'play the cancer card', try to be honest about it. Think about what it's like on the other side. No one said this was easy. Fig >> Figgertoes <agent01413@my-deja.com> got too close to a singularity. > This [quoted text clipped - 127 lines] > When you 'play the cancer card', try to be honest about it. Think > about what it's like on the other side. No one said this was easy. Yeah, I've thought about that and what you are saying is good advice; I've tried to make an effort to do things around the house that I wasn't really doing before. It's a little tough right now because I'm under surgeon's orders not to lift more than 10 lbs for two more months because of everything that they dug out inside of my head. My wife has been an absolute angel throughout all of this, though: She's taken on a lot with little to no complaint. She's got a circle of friends, though they tend to come up with the "My brother's friend had cancer and he only had three months to live" type of stories - I related to her last night the post (Dang it, I can't remember who wrote it, but it was memorable) that said "That's the positive side of having a rare cancer: No one can tell you their brother had the exact same thing and had a horrible experience" :) Your post is a good and timely reminder to stay real and think about the other people in my life - Thanks :) SignatureMarc Bissonnette Looking for a new ISP? http://www.canadianisp.com Largest ISP comparison site across Canada. On Jan 22, 10:14 am, Marc Bissonnette <dragnet\_@_/internalysis.com> wrote: > >> Figgertoes <agent01...@my-deja.com> got too close to a singularity. > > This [quoted text clipped - 145 lines] > Your post is a good and timely reminder to stay real and think about the > other people in my life - Thanks :) I thought my wife handled my cancer/chemo/etc. very well, being very supportive and only occasionally showing her frustration and fear. After I was all done with chemo, and starting to recover a bit, I found out she'd had to go cry in the bathroom at work a number of times, as the stress just became too much. Being a supporter can be harder than being a patient. I hope your wife is getting more support than the "my brother" stuff (that was Fig who pointed out the advantage of rare). Do your best to be a partner with your wife, and support her while she's supporting you, and it should go better for both. We in ASC can be a sounding board, and provide what support is possible from behind a keyboard. --- CSM > My wife gave me some sh** today; Last night I went with a friend, who's > a long-haul truck driver, to a delivery at National Grocer's: I wanted [quoted text clipped - 8 lines] > was out all night yesterday, must mean I'm ready to go for a day > tomorrow. Sigh. The adventure's over. Hope you're getting some Z's. Sun's up soon and you're needed. J >Ottawa Civic isn't exactly a backwoods country hospital :) Marc, I have not said nor meant to imply anything against your hospital. The thing about very rare cancers is that even the world expert in that cancer may have seen only a handful of cases. A common definition of "rare disease" is a disease that affects 1 in 2000 people. One website claims paraganglioma affects 1 in 100000. Of which a tiny fraction are malignant. Una >>Ottawa Civic isn't exactly a backwoods country hospital :) > [quoted text clipped - 5 lines] > claims paraganglioma affects 1 in 100000. Of which a tiny fraction are > malignant. Yeah, I know. When my son was finally diagnosed, it was only after two years of incredibly frustrating hospital visits and him being literally on the line between life and death before he finally saw a doctor who'd even heard of Angelman Syndrome. (And that's the ironic part: The only test for AS is one that is *only* for AS: In other words, in order to order a FISH test, you pretty much have to suspect AS in the first place). It's just frustrating to hear the same thing over and over again: It *shouldn't* be cancerous, etc: Well, I *know* that: It's what they've been telling me for a year. To have the doctor tell me "Whoops, we goofed, it *is* cancer" wasn't exactly what I was hoping to hear. Don't get me wrong: I'm not holding it against the Drs; After all, I've read the same things you have: Glomus Jugulare should *not* be cancerous. It *also* tends not only to be more prevalent in women, but in much older women, too: Here I am, a 35 year old guy with this stupid thing in my head. I *should* have gone into the doctor's office last week to have him tell me that I was healing nicely and he'd see me in a year - That, of course, wasn't what I was told - Ergo, here I am :) SignatureMarc Bissonnette Looking for a new ISP? http://www.canadianisp.com Largest ISP comparison site across Canada. > > The thing about very rare cancers is that even the world expert in that > > cancer may have seen only a handful of cases. A common definition of [quoted text clipped - 8 lines] > AS is one that is *only* for AS: In other words, in order to order a FISH > test, you pretty much have to suspect AS in the first place). Angelman Syndrome (AS) has confused the medical community and parents of Angelman children for hundreds of years. Initially presumed to be rare, it is now believed thousands of Angelman Syndrome cases have gone undiagnosed or misdiagnosed as cerebral palsy, autism or other childhood disorders. American web page http://www.angelman.org/angel/ J > Well Marc, welcome to the Club, where the dues are extreme, most of > th |
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