Update…

Kayak For a Cure went well (September 18, 2010); I raised well over my goal of $1500, coming in at 2nd place on my team for most funds raised at $1945.00. We spent the day paddling around the Toronto coast line, and I even got a glimpse of myself on The National with Peter Mansbridge. If you want to see the bit, it’s less than 3 minutes to watch the segment:

Link for Canadian viewers: http://www.cbc.ca/video/#/News/TV_Shows/The_National/Canada/ID=1598645895

I am at 1:32 dropping my boat (I’m the only person who slugged the sea yak by myself!) and at 1:43 paddling away and sticking out my tongue at the camera before I paddled off :)~

If that link doesn’t work, I caught most of it and it is posted here: http://www.youtube.com/watch?v=VwKeHykDlO4 (1:19 and 1:30)

I had some fun with the fund raising part: I posed a challenge to my friend Ebby; he had sponsored me already so I dared him to get some of his friends to sponsor me, and if he did, I would make him a “beardaclava” similar …to the hilarious items you see floating around on the web. Not only did Ebby put more money himself into the pot for the Canadian Cancer Society, he also got several friends to sponsor me as well, helping me to exceed my fund raising goal.

Ebby will be shoveling his driveway in STYLE this winter. (The beard is detachable so the hat can be worn alone when his wife’s patience has also worn.)

See the pic of the finished product: http://images4.ravelrycache.com/uploads/Zhar/47087414/PC080109_medium2.JPG

I am still working on other thank you tokens for my other sponsors, including various hats, dishcloth sets, and a tea cozy by request of my cousin.

As for my health, I had an MRI on September 29 and I believe there was no change in the residual tumour. I have a doctor’s appointment on Dec. 14th so I will find out for sure.

I have been lucky enough to be receiving long term disability benefits from my place of employment, and I have been off work for about a year and a half at this point. I returned to work on Nov. 25 on a trial basis, working 2 half days per week. This will likely increase into 2011, as my employer will only be so patient. I am still having challenges like less-than-normal energy levels, and some dizziness and headaches when I become tired, and a feeling of visual “overwhelmedness” when the visual environment is busy (e.g. driving, or a lot of movement, busy crowds, and scanning shelves when shopping). My memory is improving, and it is becoming easier to speak without verbally stumbling, but I’m not back to ‘normal’ yet. I have good days and bad days. However, overall I have improved significantly as compared to a year ago, and I am still getting better.

It’s just taking a long time. I have been forced to adapt a slower pace of life and for me, that remains a difficult task.

The past few months have marked steady and incremental progress in my well being. My next MRI is scheduled for the end of September, so I’ll be holding my breath around then. Other than that I am doing better than previously. I am getting out more and more and it’s a huge relief to be able to be able to enjoy the nice weather for a change. Although I am not back to my usual adventuresome self, I have enjoyed a couple short excursions by sea kayak, and I’ve been spending time gardening this year. I have a small garden in my backyard in Toronto, and a slightly larger ‘group-effort’ garden at the farm. I’ve already collected a few zucchinis, and I have some peppers, cucumbers, pumpkins, squash and an eggplant in the works.

I have not yet returned to work due to almost daily headaches, some dizziness, and relatively low tolerance for activity and cognition. However, I would like it to be known that there is a huge difference between the level of pain I experience now as compared to a year ago at this time. I am getting better.

I am fortunate to have a great group of friends and family. Thank you so much for checking in on me and reminding me that you’re thinking of me. It means a great deal.

 ___________________________________________

KAYAK FOR A CURE

If you haven’t heard me talking about it already, this is my pet project for the summer. Kayak for a Cure!

Yes, it’s true. I’m getting back in my boat.
 When I missed the Reel Paddling film festival in February, I called the sponsor (The Complete Paddler -local retailer/outfitter) to donate the $15 ticket amount because I knew that the proceeds were going to charity. Kelly at the Complete Paddler asked me if I wanted to know what charities I was donating to, and of course I said yes. They were Project C.A.N.O.E. and Kayak for a Cure.

…… “Kayak for a Cure? Really? Right on! That sounds like it’s just for me. Tell me more!” was my reaction. And the timing couldn’t have been better. I’ve been on the mend a little at a time and I’m actually feeling well enough to do something that matters. It seems like it’s been a long time, but I am blessed beyond belief that a measly 2 years is all I had to sacrifice to get to where I am now. I have high hopes for a near full recovery into the future.

As I am able to get out more now than previously, I am happy to report that I have been in a kayak 3 times this year already. I will be training for the Kayak for a Cure event and ready to make a big splash in Mississauga on September 18.
If you would like to pledge a few dollars toward my fundraising effort, that would be incredible, because a little at a time adds up over time, just like my recovery experience. And it’s because of funds raised for research and technology advances that I was even able to have surgery. I owe my life to one particular neurosurgeon, and a whole bunch of people who helped cancer treatment advance to where it was in time for me.

You can check out my personalized page with my story and event info here:

http://convio.cancer.ca/goto/zhar

Main Kayak for a Cure page:
http://www.kayakforacure.org

Team Mississauga page:
http://kayakforacure.org/2010-events/mississauga/

 I am doing bits and pieces of organizing the event, too. If you know of any business sponsors that might want to do something good for the community, we are still looking for schwag (prizes and gift) donations to help raise money to cover the cost of the event. Send them my way

Special thanks to those who have already sponsored me:

 Family
Dan & Deb
Sharon & John
Genevieve and Vanessa

Friends
Paul L
Susan S
Jamie W
Peter S

“One day at a time - this is enough. Do not look back and grieve over the past, for it is gone: and do not be troubled about the future, for it has not yet come. Live in the present, and make it so beautiful that it will be worth remembering.” - Ida Scott Taylor

As my oncologist worded it, my MRI from September looks ‘exactly the same’ as my post-surgery MRI from March. This means it hasn’t grown. But of course, the residual tumour is still present, and is expected to remain there always. So, no bad news to report. I will get another MRI in 6 months.

Since my last update I have been passing the time by allowing myself to just do what I can do. It has certainly been a challenge to pace myself since I generally don’t know what my limits are until I’ve surpassed them, followed by a day or three to recover. However, things have been ever so slowly getting better, and although I still do not have back even half of my regular energy/speed of functioning, I do find my spirits lifting. I’ve had a very quiet summer, not getting out much, and if you know me you will understand how much it grates on me to once again wave goodbye to another season of good outdoor weather.

Today I attended a follow up appointment for a balance test (ENG caloric) that was done to address the ‘dizzy’ experiences I have been having. So now to add another diagnostic term to my list: I have a moderate peripheral vestibular disorder - most likely a result of radiation to the head (the entry routes of the stereotactic radiation beam were in 5 circles around my head, and were not the same on the left and right side, so I am guessing that my left peripheral balance organ in my ear was in the unfortunate line of fire) . As such, my left ear does not function the same as my right ear anymore, and this is permanent damage done. But my doctor assures me that my brain will slowly adapt because I’m young. Feeling pretty old, actually.

I have to say that Dr. Vescan is an excellent doctor. He allowed me to take a little video of today’s sinus reconnaissance mission. I am posting it to my website and you should be able to access it at http://www.zhardesigns.com/outthere/inthere/ where you can see right into my sphenoid sinus to the soft tissue healing area that has covered over my petrous bone where the tumour originated (just millimetres away from my pons on the other side). Don’t mind my nose hairs! I really should have combed them first for a nicer presentation.

Additionally, I will be getting an MRI done in mid-September with follow up at the end of the month to see if my little pet chondrosarcoma beasty is growing again despite the full whammy of radiation permissible. (Whammy is a highly technical medical term meaning “a lot, and with aggression”.)

So there you have it. Feel free to contact me directly if you wish. I actually do answer my phone sometimes these days.

Take care, God bless, and don’t forget to live while you are alive!!

Well, well. Had me a little trip to the ER on Wednesday after blacking out twice in 10 minutes while talking to my landlord. Had been sick in bed for more than a week prior to that, with dizzies, nausea and fun things like that. It seems I may have a little bit of hypocapnia going on (not due to any easily explainable action I’m doing), as well as reduced lymphocytes, according to the blood test lab report. Otherwise, everything else pretty much seems to be fine. They even ran an ECG 12 lead (heart rhythm) to test for seizure activity. Seems I’m all clear and probably just feeling miserable due to a viral bug, as per the opinion of the ER doc, as well as my oncologist the day before. Just goes to show I’m in no shape for normal life activities.. still. This is taking much longer than I had hoped for, alas. I am resigned at this point, my frustration akin to the bubbling of mucous in my throat that is daily rinsed out. I visualize my frustrations being choked out along with the saline solution every day. It helps makes the gagging more meaningful. Ok not really, but that sounded satisfyingly melancholy, didn’t it?

June 15 came and went, uneventfully. It was the day I set for myself as a benchmark in recovery, the day by which time I should at least start to feel better. I guess by that date I was doing somewhat better.. but not by any measurable means. Some of my hair started to fall out around that day.. and really, the recovery process is much slower than I could have ever guessed, even with the understanding that it is slow. Retrospectively, of course, things had gotten a little better by the end of June, but it was still a colossal effort to do any task requiring physical exertion. I forced myself to spend a little time outside almost every day, and after several weeks, I had my tiny garden planted. I can’t believe it took as long as it did. I can’t believe how limited I still am in everyday everything. Part of why I haven’t bothered to update the blog is because I am so incredulous as how things aren’t moving along nicely. I think this might be yet another summer written off, and it’s very disheartening. I’ve been much worse this week, too. I feel like I have actually regressed by about 2 months of recovery time. I likely just have a small bug or cold, but it’s left me extra dizzy and nauseous since Monday. Not ideal. I really just want to get on with life, but even that is going to have to wait longer than I could have anticipated.

….oh Joel, I love you. Sea poop :)~

It has been awhile since I updated this so I’m mustering the effort today despite my preference to remain in hiding. I think I would have survived the ice age fairly well, cautious cave-dweller I seem to be. And since the AC problem got sorted out in my cave, the temperature is now hovering at sufficiently high mercury.

Yeah.. maybe don’t ask about that one right now. I’m going to be defending my dissertation on validification of Murphy’s Law in a short time; I have gathered a lot of data and the results are significant (at P>0.05). heh

What to say without needlessly revisiting anguish? It’s been rough - the past few weeks have not marked much noticeable gradual improvement other than a wee speck more energy. To compensate for that, I think my expectations accidently slipped upward.. and a bunch of other things happened that put me right at the end of my already fragile grip on the end of my rope. The quote “Life is a series of trials…” comes to mind, and I don’t even know how it ends, but so far it sounds about right. If you know me at all, you can probably fathom the frustration I feel when even relatively minor physical tasks are too much, like carrying 4 car tires to my car to finally get my winter tires taken off.  (Ok so maybe carrying car tires isn’t for the faint, but again, if you know me, when have I ever been faint? I’m talking about physical tasks as compared to the total average energy expenditure in a day - it ruined me!)((As a side note, it makes me happier to add this little silly tidbit in - when I was about 9 years old, I successfully took up the challenge to try to pick up my dad. Dude got air for at least a nano-second. I’ll tell you the secret of leverage at another time.))(((As a third side note, I like brackets. They encourage tangents.)))

Ok back to my story. Oh yeah. The Icky Update (for those of you who want to know- if you’ve heard enough of my venting, please skip this section, however I ask that you understand that I really truly appreciate those of you who have offered me your shoulder for unlimited use at no charge - I have a pile of thank you’s that have yet to be distributed). Yeah. June 15 is the date I chose awhile back on which to focus my expectations of feeling better. It’s not June 15 yet. Nausea ensues. Excellent phlegmatic production results yielded every day, including the instinctual gagging bit. Oh, good times, let me tell you. Seriously, you want a picture? haha Heidi, my dear cousin whom I respect so totally for the sage she has become in life, all the while remaining one of God’s most beautiful gifts to this planet….. I sent her a picture of a typical booger I get the pleasure of seeing everyday.. but she was cruisin’ for a bruisin’ because she sent me a link to a hokey musical group singing a rousing rendition of the song “Bald Is Beautiful”. Oh, good fun. I wasn’t really offended, Heidi. Hope you got your stomach back So if anyone else feels left out, just let me know.

And yeah, I actually found a bald spot recently. I’m not stressing out about it. Just waiting for more to show up. I’ll get back to you on that.  It’s not June 15 yet.

I’ve also been pretty ill in the past week; I got some sort of cold virus in addition to my already happynasty sinus situation. Prior to that week, my emotional tolerance peaked at an all time low. I hope I’m through the worst of it, but I am a changed person by this experience.

Yesterday I attended the funeral for the 33 year-old sister of a close school friend.   I was touched by a poem read and I want to share it with you:

I asked God to take away my habit.

God said, No. It is not for me to take away, but for you to give up.

I asked God to make my handicapped child whole.

God said, No. His spirit is whole, his body is only temporary.

I asked God to grant me patience.

God said, No. Patience is a by-product of tribulations; it isn’t granted, it is earned.

I asked God to give me happiness.

God said, No. I give you blessings, happiness is up to you.

I asked God to spare me pain.

God said, No. Suffering draws you apart from worldly cares and brings you closer to me.

I asked God to make my spirit grow.

God said, No. You must grow on your own, but I will prune you to make you fruitful.

I asked for all things that I might enjoy life.

God said, No. I will give you life so that you may enjoy all things.

I asked God to help me LOVE others as much as He loves me.

God said…………..Ahhh, finally! You are starting to get the idea. 

- Claudia Minden Welsz

We have progress.

May 22 was last day of radiation treatment. Feels like the PMH staff are my friends/colleagues now. ha!

Went to neuropsych appointment yesterday, and had a battery of tests done. Will find out later if I have drain bamage. Today was ENT appointment; got my sinuses shop-vac’d and doc got a good peek into the sphenoid sinus- apparently it looks good in there, but healing still takes its sweet time…. my voice may be changed permanently due to the more uh.. spacious interior made by renovation…? I hope it clears up a bit, or I will forever sound stuffed up and I will be forced to become a blues/jazz singer.

Tomorrow will be my first day that I do not have a medical appointment since before April. This may call for some sort of celebration…. of the quiet, slow-moving variety. Sigh. I am still crossing my fingers and hoping that by June 15, I will be feeling oodles better. And since oodles is such a great word, I almost feel better already.

So, now i’m home, got my morning coffee at 2:25 p.m., and I was just gauging how i feel to figger out what i should do next. The result, I actually do feel a speck better than average lately.. i’m hoping this is because there are more days distance from me and rad and i hope that keeps on being the trend!!! But still not to overdo it just yet.. might do a bit of household stuff/cleaning, might take a nap (altho i usually never actually get there when i say i’m gonna).

So yeah.. little bit little bit i’m still not okay enough to go jump and play on the monkey bars (Ebby) but FEAR NOT I will get there, and hopefully in good coincidence with the good weather that IS on its way

Today was the 3rd last rad treatment. They replaced the tubing on the mouthpiece so it wasn’t as awful as it was last week with the poor suction and drying of my mouth. I also had my last weekly review with Dr. BOS today. He told me that I should still expect my hair to fall out in chunks; I thought I had gotten lucky because I hadn’t lost any that I’ve noticed so far.

I will be getting an MRI in about 6 weeks and a follow up appointment then. I will also be continuing to see the ENT specialist, as the sinus healing bit is the most aggravating next to the effects of radiation. Dr. BOS’s description included advanced medical terminology such as “there’s a lot of crud in there still being produced that has to work it’s way out”. I will also be going to see the neuro-psychologist next week.

I don’t have much else to say today, someone was just bugging me to update this. I’m tired and it’s Advil o’clock.

I wrote an entry for this blog this morning but unfork the net went down and I wasn’t able to save it. It was full of all the good things that have happened to me recently, and all the warm happy feelings I’ve been having, and how much I’ve learned and grown through my experiences.

bwa hah ha ha ha! ok not quite.

I think it was actually about the thing I’m learning that I wasn’t prepped for through research or medical expert advice. They did tell me that the side effects of radiation would show up after about 2 weeks into treatment. What they didn’t tell me (or I didn’t pay attention to) was that the side effects are cumulative, and continue to get worse until about 2 weeks after treatment stops. I’ve been quite nauseous for the past few days now, worse than before. So much for counting down the days; I think I’ll just zone out every chance I get and chant mantras for a month.

This week has rather left me in awe at the sheer continuity of one thing after another firing at me. I’m sure I will weather it; if you know me you know I’m not made of straw - but it’s still chapping my ass (if those of you of more gracious readership will pardon my candor).  My tolerance is low at the onset of the day, but I’m experiencing Murphy’s law to what seems a full extent. I wish it would get to the point of numbness, but somehow and evilly, it’s not. I wish I could stop feeling & caring after a certain point of pain & disbelief, but nay - onward ticks the clock and the marches the calendar with a fresh new round of wtfIdon’tneedthis for every day .. today it was my car. Again. This time the clutch broke on the highway ramp enroute to radiation. (As I write this, I am immediately impassioned to lobby for OHIP to cover limosine service for all out-patients requiring frequent treatment. I then have thoughts of people who must exist that may struggle much harder than I do to get to their appointments due to their circumstances.) So with my usual acknowledgement that ‘It could have been worse’, I tell you that it ruined my day. My day that would have been glorious otherwise, happily going to my happy radiation appointment and happily going home and happily pushing myself to get my happy daily living requirements met so I can happily go back to bed to sleep off the happy headache. Glorious! Stupid clutch. Stupid everything. June 15. That’s the day I’ve picked to focus on. So happy thoughts to gloss over today - The CAA truck showed up in decent time and no one got hurt in the awkward busy place I had to pull over; I didn’t miss my rad appt; Peter’s garage rocked as much as ever and patched up my poor old car & it turned out to be quite a nice catch-up visit despite my incessant twitching due to short-circuiting neural patterns that really must weird everyone out.. Yes I jest.

Maybe.

Who needs to do their taxes or plant soil-starved seedlings in the garden anyway? The world and its order will have to wait yet another day for a spark of energy.

It seems like I’m not keeping up as much with the updates. Seems like I’ve been a lot more tired/grumpy lately. And if you know me at all, I tend to hermit at times like this. Unfork, these times are stretching far beyond any temporary mood inconvenience I’ve ever had to endure in the past. So hiding out in my cave to weather the storm can only work for a little while before it propogates its own destructive patterns. (more…)

Afternoon appointments are so much more palatable - (more…)

Time for some positive news, I guess… don’t want the reader polls to swoop. hehe (more…)

Oops, looks like I haven’t updated the blog in a bit. Here’s the update:

• Today: I went to a radiation appointment. I’m really tired. (more…)

Did nothing all weekend. Tired. Headache when I move around a lot. GT on the sofa.

so… very.. tired .. today. (more…)

Nothing like a brisk walk in an April downpour… Since I park in the neighbourhood I used to live (more…)

Thank goodness I don’t have to worry about the physics of the universe ceasing to work.

Now that I’ve put things in perspective, (more…)

“Jesus simplified a world that was lost in fear. He died upholding this message: Love first.”

(more…)

So that smell I mentioned yesterday? Ozone.

Apparently every 2-3 patients will experience (more…)