Thursday, July 27, 2006

The Day My Mouth Bit Back

And on the third day, his tongue did swell and crack and his mouth and throat did fill with sores. Ok - so by Wednesday, my tongue went from "no big deal" to "Biblical" - as in plagued and full of soreness and overall ickiness. You know, what gets me the most though? You think if I'm not eating, I'd lose like a couple of pounds or something. Nada. Nothing - I don't even know how that's possible. So there you have it, you can't lose weight by not eating.

Hopefully the worst is done and it will start feeling better
over the next couple of days. If not, everyone should prepare themselves for a tsunami of quiet moaning. Sorry Ang.



Tuesday, July 25, 2006

Here we are again with another one of my patented medical updates. Many thanks to all my well-wishers. You know, it's hearing from all the fans out there that makes this whole thing worth doing. Thanks, no really, please, hold your applause to the end, thanks. Firstly, as to why it took so long for my hand to recover? Well, the nerve specialist said 4-5 months ago that it would take 4-6 months for recovery. Nerve sheathing regenerates at about a millimetre a day - let's do the math - it's been 5 months - that's 150 days or 150 mm, so the injury was about 6-8 inches (150-200mm) from my wrist near my elbow. Plus, I've discovered I am a slow healer. No Mats Sudin here. If they say 6-8 wks, then I'll log in at 8-9 wks without doubt.

Luckily, the VVM treatment hasn't been bad at all. The day of the treatment I felt pretty lousy, but all of that was the after effects of the anaesthetic combined with a bad headache I had before going to the hospital, which turned into a migraine during the day. After a good night's sleep, the headache,vertigo and nausea subsided and I feel okay.

My tongue hurts a little more today and there are some sores starting in the mouth (a side effect of the bleomycin) but over all it's not as bad as it could have been. Which does leave me to wonder whether or not the treatment will have any effect at all. Hopefully it will bear out favourably over the next couple of months.

They only did one of two procedures we had discussed. The second treatment would have been for a lump behind my left ear where they would have injected a much more aggressive solution. Had they done that, I would have, in a word, felt like shit. The more aggressive alcohol solution causes a lot of swelling and I'm sure I would have had a softball sized lump on the side of my head (no exaggeration) and it would have affected my whole left side of my head. I'm sure they decided not to do it for two reasons;

- mixing the two procedures is pretty unscientific, and probably provides poor clinical data (how would you know what was working when and where and would there be unseen side effects of combining the two drugs - the other being the Bleomycin).

- they seemed to be running about 15 minutes behind schedule, plus they had accidentally confused staff due to a change in summer schedules and they had someone scheduled to go right after me.

Surprisingly, the procedure takes almost two hours. They inject the bleomycin, then sit back and watch where it goes via x-ray monitors. Based on what they see, how much they inject etc., determines what they do next. So what they do precisely on the day of the treatment is decided by how it goes on the table.

One thing I couldn't understand is why the hospital is so damned cold. It was near morgue like temperatures in the operating room. Perhaps if they lose a patient, they don't have to worry about immediate spoiling. Luckily for me, no such precaution was required.

I don't really know what to expect in the next six weeks, when I'm slated to meet the doctor, but I assume there will be some slight swelling, mouth sores, then continued decreased swelling until I can have another procedure done. As the bleo-treatment is so less aggressive, they've found that about 5 sessions are needed to see big or full results. If this works, it's not bad at all. I could easily live with a day of grogginess every few months if it leads to success.

In this matter, patience is not only a virtual but a necessity.

Thanks for the well wishes and no need to fret, I'm doing fine.



Saturday, July 22, 2006

Medical Update

After 5 months of relative inactivity my left hand has decided to get off it's ass and actually do something. And in good time too. I just saw the nerve specialist who said the MRI looked normal and no surgery was necessary (just a follow up in 2 months) - so while not fully functional - it's at least started to function and extend itself. After 5 months of owning a clutched mitt of a hand, like a stuffed monkey paw memento from a Brady Bunch episode (minus the fun occult curse) it feels good to sit and practice opening and closing my fingers. Weeeeee look-at-it go! Summer fun never ends when you have two functioning hands!

Now for the really serious news. On Wednesday I was told that Monday, July 24th I finally go for one of several planned 'sessions' in which my tongue will be injected with Bleomycin and other lumps of knotted blood vessels may or may not be injected with an alcohol solution. These various drugs are injected "at the site of the malformation" with the aim of shriveling them into insignificance. The hopeful result being no more lumps in my tongue, jaw, ear, neck etc. etc.

The Bleomycin is a recently approved treatment which is less aggressive (causes less swelling) than other solutions and is thought to be the best approach to treating Venous Vascular Malformations (VVM) in the mouth, tongue, lips or other sensitive areas. This new treatment is practiced in two places in the world. Toronto and Johannesburg. It may take up to 5 sessions, with several months in-between each, to make a significant difference but it really is the only option as other solutions cause too much swelling to be practical in the mouth or tongue. So hopefully the toughest part of this session will be getting to the hospital at 6:30 in the AM. It's a out-patient sort of thing, so I'll be home in time for tea and scones. I'll probably be completely out of it on Monday but hopefully by Tuesday or Wednesday, I'll just have a slightly sore tongue and be in a mildly sour mood. Unlike the last treatment I had with alcohol, where I was sore and weeping (i.e. bleeding) for 2 weeks, I shouldn't really notice Bleomycin working. Because there is less swelling, it will take more injections over a longer period to achieve the desired results. If I'm really lucky, one injection will have sweeping results and have a great impact. If I'm really unlucky, there will be no change. I expect the result to fall somewhere in-between. As with anything organic, it will take time and patience to see what the real results will be.

So there you have it. You are now just as up-to-date on my health as I am. You lucky devils! So many people are completely ignorant of my health it is really very sad. I only hope my recent UN designation as a Superficially Unhealthy Citizen (or SUC as we like to call ourselves) will help all those other people with minor skin aliments, bothersome allergies and stiff necks from sleeping awkwardly on the couch to know that you are not alone. We will prevail and the future is ours to enjoy.

Yours, regardless,


Saturday, July 15, 2006

high tide, still water
Originally uploaded by somirasao.

I know a place where no cars go, and it makes for a lovely vacation spot. It's just a short boat ride from Portland, Maine. Due to a some malfunction of the mind or spirit, we neglected to photograph the place much (note my use of someone else's photo of Portland). All the better then to preserve the trip with these words, which hopefully will last longer and serve as a more concrete monument than the temporal printing of ink on light sensitive paper or illuminated screens ever could.

I would like to tell you when and how long we were there, but time has a way of becoming misplaced and forgotten in the binder vines on the Island. I would like to describe the house we stayed in, but you wouldn't believe me anyway. I could describe the weather, but "weather" happens everywhere, and if you haven't seen the sun, moon or clouds at this point in your life, then perhaps it is too late for you. Besides, writers should avoid describing the weather. Shame. I like describing the weather. I think instead, what I should do, dear Reader, is just lend insight into the Island State of Mind (that's ISM for those not paying attention).

Threats of swimming, eating, or games are ever present and share equal billing as time wasting activities. Of course, on the Island, time wasted, is time well spent. On hot days, when you might stop believing that humans are different from other animals, your thoughts wash ashore with driftwood, broken bits of buoys and water borne viruses. Thoughts of things done badly or that may be done badly at some future date, places to go or to be, or where you once were or where you've always been.

In-the-air intrusions of over head flights from Portland and telephone rings are the only brief reminders that this is a real place in a real time in a real bay off a real shoreline. Morning conversations between fog horns aren't so different from pool bound children calling "Marco", responding, "Polo".

Everything E.B. White said about Maine is true, even the stuff that was complete crap. What struck me were the remembered flashes of another island in Bonavista Bay, where as a ten-year-old I climbed sun-whitened docks and slippery, grassy trails. These two places are so similar in temperament, yet so different in tailoring. There is much to remember. I'll have to type faster to safe guard the memory of half played croquet matches and mallets sunning themselves in the grass, the bone vibrating cold of shoreline swims, the warmth of the outdoor shower, the full kitchen, the crowded table, the lazy insects captured by a six-year-old's fingers, the deer-coloured hound bounding past pathways, the flutter and shimmer of the birch leaves under a seven-eighths full moon, endless dishwashing, the Romanesque flood of food, the small talk, big talk, lost talk, that sunny, brine-breeze, crisp clapboard, open verandahs, slapped screen doors, bug spray perfumes, wet shoes, sandy socks, misplaced books, unfinished magazines, wet ferns, darkened concrete caves, itchy ankles, cold beer and corked wine.


Saturday, July 01, 2006

Revue neon
Originally uploaded by rowdyman.

Tonight was the last screening at the Revue Cinema. Their last two shows were The Wizard of Oz and Lawerence of Arabia (they sold out having offered the tickets at $1 a piece). A community group has formed and hopefully the community at large will realize the importance of having a thriving local cinema as part of the diversity of the street. As I'm writing this I notice that the Revue's website is down. Hopefully it is only a temporary hiatus. There was a gathering of about 50 or so people outside the cinema tonight trying to rally support for their plan to operate the theatre as a not-for-profit business (sort of like me at the moment - sheesh).

I can't say I went to the Revue very often - maybe only 4 or 5 times, but it certainly warmed my heart knowing it was there. Hopefully they can make a go of running it. I have to admit, the way some people talk about opening a coffee shop or a restaurant, I always day dreamed about running a theatre. Well, I bought a "Save the Revue" t-shirt and I've signed on as a volunteer so we'll see just how far this goes.


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