I was beginning to think that suffering was the status quo for me, and that I was getting used to it.

I was wrong. (more…)

I spent most of today at Princess Margaret Hospital with my mom. I had several appointments in preparation for radiation: I met with Dr. O’Sullivan, got fitted for a frame to immobilize my head (more…)

I don’t know about this blogging business… I feel like I’m just rambling on far too much to no one. (more…)

I was able to attend Erin’s wedding shower yesterday in Hamilton, thanks to my cuz Ruth. Great day even though it started way too early and I slipped down the stairs before 9 a.m. Great until I got home, that is.. until one of my worst headaches yet kicked in. I wonder how I can find the line between overdoing it and not becoming depressed due to isolation… it is so difficult for me to sit on my hands and wait this illness out with positivity. It’s one or the other.

Appointment with Dr. Gentili tomorrow (neurosurgeon). It will be the first time talking to him since being discharged from the hospital. .. I wonder if I should get him flowers, since he technically saved my life…

‘Prayers are generally answered in ways one does not expect. God’s lights in our dark nights are as numerous as the stars, if we look for them.’ 

I had a great rant yesterday but didn’t take the time to write it down so let’s see if I can remember what it was all about.. (more…)

Luck o’ the Irish to ya today! I am celebrating St. Patrick’s day in my own way that I am calling “Death to green”. I went to my doc today and got some heavy duty antibiotics which will hopefully address the pain in my left sinuses and eye, and get some healing in progress prior to getting radiation. I also have a new pet, Mr. Humidifier. He makes funny noises; not very fun to play with, though.

New link at left side of page:  Research trial & radiation info

Browse over to the right side of the screen and click on CALENDAR if you would like to keep tabs on my medical appointments. I have a plethora of medical specialists now. Maybe I can convince them to diagnose any further medical problems that will arise later so that I can enjoy a future without medical concerns. Ha.

Back to reality, I received yet another phonecall from my friendly radiation planning team. Apparently I will be part of a research trial for ultra-high radiation beams - hahah gotcha! The word “trial” kind of scares me when it comes anywhere near the same sentence as “your treatment”.  However, there is indeed a research trial, but it’s about how the mould of my palate will be taken. The old method apparently involves straps of some sort to tighten the mould-taking apparatus, where the new method under testing involves a vaccuum seal and is supposedly more precise. Neither of these options sound as comfortable as a Fairmont hotel, but at least I am told there will be no difference in my treatment. And, assuming that the trial is based on sound scientific logic and was funded because it actually made sense, I am choosing not to worry that there might be some vaccuum emergency whereby the clinicians accidentally remove all of my upper teeth with the finished mould resulting in a) a frame that doesn’t fit tightly and radiation beams go berserk in my brain during therapy, or b) they have to make a new mould using the old method to fit my newly excavated palate with no teeth.

The consent is being mailed to me, and I look forward to additional information contained therein by which to pacify my curiosity. Oh Stacey, you say, do you really think such a thing could happen? Of course not, I reply. But there is dark humour to be had, and I’ve read a lot of Calvin and Hobbes (the comic strip, not the theological debates) and besides, I’m told I tend to overcatastrophize. This one’s for you. Srsly. ::)

4:15 p.m. - RIP Frankie - Euthanized today due to sudden onset of vestibular disease after not eating as usual since Thursday. He was ‘our’ recycled kitty chosen at the Toronto Humane society about a year ago. Whatever his previous existence had been, it was a good year of incessant purring, scratching on the palm tree and sitting on the nearest leg or head he could find (monorail cat) and eating as much of the ‘good’ stuff ($$ wet food) as his high metabolism could hold just to keep a few pounds on. He was a good kitty and will be sorely missed.

By the looks of it, I may single-handedly keep the Kleenex corporation in good business during this time of recession.

I never realized the holding capacity of sinuses. I am in awe of my inner workings (that’s biblical, for you buffs, although the Psalmist probably wasn’t referring to his boogers). I mentioned to my friend Del that I could probably furnish a small set for an alien sci-fi movie, and he told me to keep it just in case it might come in handy. I was already thinking of saving it for next Christmas, as it’s quite festive what with the green and red theme.  Then he told me a really bad joke that isn’t worth repeating.

Thank goodness for my mom, who happened to be in town today on errands. The sweet lady brought by a shipment of tissues, Advil and Vitamin C among other items. I intend to top my system up with Vitamin C as much as possible prior to radiation. Did you know that they advise you not to take anti-oxidants during radiation? (That would include Vitamin C, E, etc.) This will be today’s mystery. Aren’t you excited? A mystery! I do not yet know the answer, because the pamphlet given to me by the radiation RN case manager said that they would tell me more on my next appointment. I look forward to enlightening you all out of your suspense after I find out why. Anyone wanna place a bet on it having something to do with interference and free radicals? hmmmmmmmmmm………..

Fwiw, I still don’t feel good, albeit the longer I actually get to sleep the better I feel. (Sleep has been difficult due to pain, and especially recently, an inability to breathe through my nose.) I believe today may mark a small upward trend, hence the ability to think and type at the same time. However, the analgesics still aren’t making any significant difference. I just really feel the need to be sarcastic today, what with all this pent upness going on. Yes, I live in a pent house. Bsmt level. Far too much sunlight in here for my strained eyes. So, so sorry work ppl if you’re reading this and find that my candor does not suit your expectations of me. You see, this blog is personal and has no bearing on my work presentation so don’t mind my cathartic approach. I’m sure if and when I see you in person I will have pulled myself together sufficiently to maintain some form of professionalism. I thus release myself from whatever bonds or criticism I may have assumed that you have over my silly online persona and demeanor. Welcome to the real me, as already experienced and perhaps even encouraged by hundreds of others served. ::)   I dare you to start calling me Zhar.

So back to my complaining.. arghhhhhh. This is my new emoticon ::)   (double vision, get it?) Look for it on specially marked packets coming your way.

My birthday was on Tuesday. I have never received so many musical birthday cards in my life.. hahah noteably the card from my coolest cuz Julie that made me laugh then cry when I realized what song it was, and the silly monkey screech card from my classy mother. Actually, I’ve never received so many cards in general at one time in my life!  Entire church congregations are remembering me.. thanks Bethesda and Canton!! I feel like an apostle in prison.. hehheh ohk I know it doesn’t compare, but it does feel like I’m living in hiding with a burden to bear that has spiritual connotations… in a cave hiding from the sun that will sear my retinas. Maybe it’s closer to a vampire experience -  hmm..  a vampire who crochets and knits to pass time. And receives volumes of postcards from Australia with kangaroos on them. You should see how ridiculous my fridge looks. Ohk I guess I’m the furthest thing from apostledom. Let’s just call it ridiculous, staple it together and call it bad weather (gotta love Jack Johnson).

My mom reminded me to be patient and not be so gung-ho to heal faster than my body will allow. I like the word gung-ho. I don’t think she actually used that word, but it’s a good one. It’s a kind of word that you have to swing your arm to while saying it. There aren’t many words like that, you have to admit. So stuff takes time. What a waste of time. I’d like to file for a refund on my past year of existence so I don’t get old so fast. Then it wouldn’t be so hard to take time to smell the roses.

Roses, I wish. Lilacs even better. But, I get to smell cardboard. Rotten cardboard. That’s the odour that has been lingering in my nose for weeks since surgery. I’m going to ask the ENT if I can substitute a couple of my daily x5 minimum nasal rinses/sprays with a blast of Airwick room freshener instead. That oughtta improve the air in there.

And now it is time for my much anticipated nasal rinsing time. Ughhhh

Wow I feel awful today. My sinuses were healing gradually a little at a time until last weekend, since which time they are gradually getting worse again. My phone call to the nurse practitioner from about 2 weeks ago was finally returned this week and I have an appointment to follow up with the healing of my sinuses with an ENT (Ear, Nose & Throat) specialist.. but that appointment is not until March 31. Advil isn’t helping me today. I think it might be time to go see my GP and get something stronger, at least so I can sleep at night. I was hoping by now I’d have less of a hermit’s existence. Oh well.

I still haven’t received my ROE so I can finish my application for EI. Oh how I hate money.

March 12, 2009 - MRI originally scheduled for March 26 was moved up, and I went to TGH at 8 PM for that. MRI technology is improving at TGH. They now use a different machine, with headphones instead of earplugs, and best of all,  the needle used to inject contrast agent (gadolinium) was a teeny tiny “butterfly” needle that didn’t hurt much, much to the relief of my circulatory system which currently resembles a sieve.

I am trying to find a theme for wordpress that will allow me to post my Google calendar, so when that happens you will be able to see all my fun trips downtown. I am relieved that I didn’t have a chance to move away from Toronto since being done school, as that would have made traveling all the worse!

Thank you for all the comments. I’m surprised at the interest in my hair style.. haha. I was actually thinking of just shaving my head.

Hey hi..

This is the site intended for creative avenues and ventures that I’ve been putting off developing for over a year. I will be using it as a temporary home for personal updates that friends and family can check any time. I will be updating it as things progress. Hopefully, this way I will be able to keep everyone in the loop, at your preferred level of individual interest.

Alors! First off, I will bring the story up to the present, then follow up with today’s update.

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Email - Jan. 12, 2009

Hi!
If you are reading this email, it means you are a wonderful person who is special to Stacey (known to some as Zhar). Give yourself a hug from me, then read on…

I decided to send this email as a means of letting you know what is going on with me, since I have completely lost track of who knows what so far in my recent experiences that are keeping me from being in touch with you more often.

If you are faint of knee or heart, please sit, as I want to ensure you are in good health
Anyway, if you don’t know already, I’ve had double vision for quite some time now, since May 2008 in fact. Along with that, headaches and a bunch of other factors that have limited the quality of my life, up to and including my employment. I’ve been working ‘modified duties’ since May, which means that I am doing as much work as I can from home, while putting in as many hours as possible such that I still have income. When I’m not doing work stuff, I’m generally still hiding out at home since the dizziness, headaches and double vision are more tolerable if i stay inside and don’t go anywhere.
Since July, I’ve been referred from optometrist to opthalmologist to neuro-opthalmologist to neurosurgeon. I’ve had at least 4 MRI’s and 2 CT scans. They found a small mass in my brain near the optic nerve that controls movement of my right eye, and for some reason I had to wait a very long time before finally getting an appointment with the neurosurgeon. He was the best I was told, but he didn’t call back after having me go for his own MRIs and CT scan in November. So, finally in January I was referred to another neurosurgeon and got an appointment within days.
That day was today.
From here, this will be new info to everyone reading this. The neurosurgeon told me that there are a few types of masses that can occur in the area where mine is, and until they know exactly which one it is, they won’t really know which treatment option will be best. So, I will be having a tissue sample taken in an endoscopic procedure in about 4-6 weeks from now. (Endoscopic means they stick a scope thing up my nose; it’s less invasive than chopping my brain open, but I will be in the hospital for a couple days.
If you are a research hound and like to Google things, the likely potential diagnoses may include chondrosarcoma, or meningioma, or chordoma. None of these seem particularly pleasing to be host to, however I’m hoping it’s not chordoma, which is more aggressive. Thankfully, it appears to be a slow-growing (benign) type, but there is a further complication that the place it’s in is very small, and even a small amount of growth can affect me.

So there you have it. (If you don’t quite have it, all you need to know is that I have a brain tumour, and i’m getting surgery done soon so they can see what kind.)

In any case, I’ve still got to sort out my feelings since it’s been a long haul so far and today’s appointment has hit home the potentially serious nature of this.
I really appreciate the encouragement I’ve received from friends and family. I need you guys.

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Email -  Mon., Feb 16, 2009

Hi all,

Short and sweet email here - It has been a tumultuous past few weeks for me..

My surgery date is February 17 at 11:00 a.m. through 3:00 or 4:00 PM EST(for transsphenoidal biopsy of skull lesion - tissue sample to be taken in order to establish diagnosis for further treatment, aka up my nose with a rubber hose).
Please remember me in prayer as you are able.

An email update will be sent out by David either the evening same day or next day depending on info available. Thanks for your support through this weird and emotionally-charged time for me, it really means a lot to me.
There are no guarantees in life, but at this point I am banking on being around to discuss that further with you in times to come.
Thank you for being part of my life, as I have been somewhat hesitant/reluctant to reach out, but as I have done so, I have received positive feedback for doing so.

Please feel free to share this or other info, as I may have forgotten to add some to the recipient list.
Hopefully life will soon stop getting on my optic nerve

Love,

Stacey

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Email - Feb. 17, 2009

Just a quick update - Stacey is out of surgery and preliminary report
is good. The Dr was able to remove some of the mass which should help
resolve the symptoms. There is likely some radiation therapy required
later to reduce the mass further. From what i’m told, the tumor is not
malignant, but requires further analysis for complete diagnosis. I’ll
be heading up to see Stacey around 5:30 when she is schedule to be out
of intensive care/recovery.

DJM:>

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Email - Feb. 19, 2009

Hello Everyone,

Another update - Stacey should be heading home today after a few less

than optimal nights recovering from surgery. She met with her surgeon

and got some positive feedback about the progress, and path to

recovery. She will likely be spending the next few days resting, but

will be online to follow up with all the wonderful support she’s been

given by her friends and family. I have relayed all the messages

people have sent for her. Again, thanks for keeping her in your

thoughts.

DJM:>

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Update -  MARCH 4/09:

No information back yet from biopsy but surgeon told me it was either chordoma or chondrosarcoma. I will be attending preliminary radiation appointment at Princess Margaret Hospital on March 10. It is unknown yet as to how long I will be off work.

I’ve been in lots of pain since the surgery.. headaches everyday since May and worse since the surgery as my sinuses heal slowly. I still have double vision too when I look to the right, and my eyes just ache when I have to look at busy movement (i.e. everything except a quiet indoor room). At least I have something to hope for, and that is that the symptoms may be reduced over time now that the pressure is off my optic nerve.

Thanks for your concern and encouragement! It really does mean a lot to me.

x-Stacey

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Information from my appointment at Princess Margaret Hospital - March 10, 2009

Diagnosis: Chondrosarcoma of petrous bone at skull base. (Low grade bone cancer in my brain.) Non life-threatening if treated; managed by treatment including external stereotactic radiation. Size at widest diameter ~1.6 cm (the oncologist told me that the biggest chondrosarcoma he has seen is 5x that size, although he didn’t indicate where that large tumour might have been located.)

Next steps: MRI (March 26), Radiation every day for 7 weeks starting in April through May 22, then get on with life.

Side effects to be expected: Headaches, nausea, skin irritation, hair loss, nausea, soreness in top of throat.

Details: I spent 9:00 a.m. - 12:45 p.m. in the sarcoma unit talking to Dr. N. Patil (fellow) and Dr. O’Sullivan (on behalf of all doctors in clinic, including Dr. Catton and Dr. Chung). Dr. O’Sullivan told me that chondrosarcoma can occur in any bone, but the petrous bone is a classic place for chondrosarcoma to arise, although it is not known why the petrous bone seems to be a focus of this form of cancer.

Chondrosarcoma is relatively uncommon; approximately 6-10 patients are seen at PMH annually for similar diagnoses. The difficulty in dealing with chondrosarcoma of the petrous bone is the critical anatomy of the surrounding structures (including carotid artery, optic nerve and pituitary stalk).

The good news is that chondrosarcoma does not spread to other organs (although some cases have been seen where the tumour progresses to growth beyond the petrous bone, onto the back of the brain and into the spinal column, causing worse problems).

The less good news is when there are nerve problems (e.g. diplopia - double vision) caused by disruption of the cranial nerve, if the space-occupation is not eliminated (e.g. thru surgical removal), then double vision will not be resolved by radation. Radiation is not likely to improve vision, rather, it just stops the tumour from further growth, and whatever residual tumour that remains will “just sit there”.

However, intensity-modulated radiation is certainly indicated in treatment for me. I will attend a planning session on March 26 including frame fitting and patient education (I get to watch a radiation video). Frame fitting will include a cast mold of my upper jaw and teeth and a bite block which will serve the purpose of immobilizing me during treatment, as well as guide positioning of the radiation machine. Then I will go through a CT scan simulation where the technicians figure out the other stuff and explain other stuff to me (I will let you know how it goes). That afternoon I will get a post-operative MRI done, and my radiation sessions are scheduled to start about a week later, putting us into the first week of April. They estimate that I will receive about 7.5 weeks of radiation, which includes “a full dose, slowly”. They told me already that my last day of radiation will be May 22. I haven’t done the math so I don’t know if that adds up.

Strangely, the Patient Flow Coordinator (PFC) asked me if I was planning to cut my hair. The first thing I thought was: “Well, yeah, if it starts to fall out!” He told me that I should not change my hair style after the planning session occurs, because this can make a difference in how tightly the frame fits. So now I gotta go get my hair cut, just because I’m thinking about it!

Oh yeah, and happy birthday to me! I had to get an emissions test, buy a new gas cap, renew my license sticker, pay outstanding fines of $66, AND an extra $60 for that new bunk GTA tax for Toronto car owners. I intend to have several unbirthdays after this is all over, if only to make up for wasted time and foul moods this past year has crapped on me.

Cheers!