Fundraiser Nov 5 for Chris and Sonia

To those of you who don't know yet, I'm sorry this is the way you
find out, but I was diagnosed with brain cancer in August. I'll
be healthy again soon enough, but in the meantime the financial
burdens have been rather higher than one might expect.

Our great friend Marie Clarke is going to the huge effort of
throwing a fund-raiser (details below). She's asked me to
forward this to any and all. I know of many people I should
be sending this to, but don't have the contact information for.
If you know who I'm talking about, please feel free to forward
this to them.

It's hard to ask for help, but I guess this is us, asking.

Thank you, and love,
-Chris, Sonia, Evan, Elena

---------- Forwarded message ----------
From:
Date: Thu, Oct 7, 2010 at 4:00 PM
Subject: Fundraising event on November 5, 2010
To: Marie Clarke


Calling all family and friends!

I have a special request for you to attend or contribute in any
way you can to a very special cause. My two closest friends -
Sonia and Chris Thiessen are in need of our help.

Background

Sonia and Chris are very happily married parents of two
children - Evan, who is 2 and a half and Elena, who was
just born on Wednesday October 6!

Both Chris and Sonia are not working right now due to
Chris' medical condition and Sonia's maternity leave.

The Situation

In August 2010, Chris was diagnosed with an operable
brain tumour. Within days, Chris underwent surgery to
remove his entire right temporal lobe. The tumour was
a 'glioblastoma' which is the most aggressive type of
cancer.

Chris was told there are no guarantees that the entire
tumour was removed and re-growth would be both likely and
rapid.

The tumour has in fact returned and needs immediate
attention.

Chris is working closely with various medical professionals
both in Canada and the United States to seek alternative / trial
treatments that may help his situation as chemotherapy and
radiation may not be an option. The bottom line is that Chris
wants to live. He is trying anything and everything he can to
beat this thing, but with the various drug treatments
comes extensive costs (thousands per month) which
governent and private health insurance do not entirely cover.
Sonia and Chris are forced to pay for these costs through the
equity in their mortgage.

Where We Need Your Help
On November 5, 2010 at 7:30 p.m. - there will be a fund raising
event held at the Waterloo Rec Centre's "Hauser Haus". All proceeds
will go to Sonia and Chris to support them with their medical expenses.
The evening will include:

Dance / live band (The John McKinley Band)

Silent auction

Raffle

Snacks

Cash bar

Any donations of prizes for the silent auction and raffle would
be greatly appreciated.

For tickets or to make a donation, please contact
marie1.clarke@rogers.com or doclarke@rogers.com.

Tickets are $25 per person.

Sincerely,

Marie Clarke

Update from Chris

I'm posting a quick update on behalf of Chris because a lot of people have asked how he's doing and he hasn't had the time to post any updates here.

Thankfully his Great Brain is working as well it did before having a big chunk of it removed, and since his surgery he has spent 100's of hours researching all possible treatments. He's now employing a cocktail of drugs, supplements, vitamins, etc.

Here's a summary:

- had an MRI in Buffalo a couple of weeks ago which showed no new tumor growth; planning another MRI in a couple of weeks
- working with Dr. Khan at private clinic Medicor in Toronto; prescribed an off-label drug called DCA (see )
- doctors at the Juravinky clink in Hamilton have prescribed radiation and chemo (temozolomide); he's declined the radiation.

Drugs, supplements, etc.:

- DCA
- possibly temozolomide (chemotherapy)
- looking at cloroquine (antimalarial drug shown to be effective along with chemo)

- green tea
- essential fatty acids EPA, DHA, GLA, CLA
- melatonin
- betathiamine
- isofalvones of soy extract
- large amounts of vitamin D
- psk mushroom extract
- maitake d-fraction mushroom extract
- CoQ10
- maybe resveratrol
- maybe circumin
- low-carb diet

All things considered, Chris is doing very well. He's maintained a positive attitude throughout this ordeal -- admirable and inspiring to say the least.

Mon, Tue, Wed, half of Thu

Hi everybody,

I wrote my previous status update this past Monday. It was about 24
hours after the surgery that removed my brain tumor and my right
temporal lobe, and I was marvelling that I didn't seem to have any
neurological deficits. I was lucky.

I followed the update with a walk around the floor, testing my legs,
catching some rays. The doctors and nurses cautioned me not to overdo
it, but I was feeling good. I was sent for a CT scan to check my
noggin. It showed nothing of the tumor remaining, but with all the
mess of the surgery in there, that wasn't expected. The neurosurgeon
that relayed the CT results also relayed the news that the tumor had
likely been cancerous.

Next step was to get out of there. To let me out I needed to be
oriented, to walk, and to pee. I passed with flying colors (yellow,
that is :). So we were good to go. I needed another MRI, and luckily
a slot opened just before we were going to leave, so we didn't have to
come back in the following day. So home we went.

The drive home wasn't long, but it was odd. The world looked strange,
somehow. Probably had something to do with one eye being crooked. :)

Also, the unexpected: I felt unsafe. I didn't realize until I was
gone how much I would miss the fussing nurses, their clear drug
schedules, their constant temperature and blood pressure checks, and
their constant questions about who and where I was. At home Sonia wss
learning a drug schedule that pharmacists and memory seemed to
conflict on. No-one checked my vitals. The pieces did come together,
but it wasn't till the next day that the unsafe feeling passed. Who'd
a thunk?

I slept that night, but Tuesday and Wednesday were hard.

We received a call from Dr. Reddy about the MRI results. Dr
Reddy had spearheaded the surgery (my head, that is, hahaha), and is
also known as Dr. Serious. The MRI just showed what was expected:
normal surgery aftermath. I also asked him what type of tumor he
thought it was. He felt certain it was a glioblastoma.

Glioblastoma has poor statistics; 50% live 1 year, 10% live 5. I
spent a lot of time, both through the nights and during the days,
working on acceptance. I used mindfulness meditation almost
constantly, trying to let the worries and the thoughts flow and to be
OK with the uncertainty. It was very intense, but I managed to gain
some of my footing again, to find rays of sunshine in the midst of the
chaos. I'm afraid in the meantime my dark mood made things only
harder for Sonia. I'm sure it was hard for my parents to see as well.
Things that I'm sorry for.

Wednesday evening Doug and Marie came to visit, and brought some extra
cheer and good humor. That helped lighten our mood considerably.

Thursday morning I was feeling like I'd started to come out the other
side. Ray and Laura visited, on their way back from Vegas, bearing
stories and more good cheer. Thanks again, guys.

I was ready to actually enjoy a breakfast with my dad, so out we went
to 50's Diner. Good times.

Sonia came by and picked me up, and off we went to MedShare, where I
worked and will work again, to file for short term disability. We
wound up staying for more than an hour, talking to Barry and Lynne,
both about their deep knowledge of the health care system, and things
just fun and unrelated. More good times. Taking a handshake and
thank you tour around the office, out we went.

After, Sonia and I went off to visit Bob Nickel, a good friend. He'd
worried about the faints I was having and my low energy level weeks
before I worried much. He'd also lost his wife to cancer some 10
years ago. Who better to talk to than someone who's been through
this, so we sat with him in his house, and he shared his experience.
It was sobering at times, but also uplifting. He'd been through a
lot, but come out the other side still the kind of man I can admire:
happy, caring, with great friends and lots of family, and a life of
many rich experiences.

That afternoon my parents left for the airport. We were sad to see
them go, but more than grateful that they'd come. They made our lives
so much easier for the time they were here, both during and
post-hospital, tending to Evan, cooking, helping out around the house,
and handing out hugs like they had an unlimited supply. Thanks, Mom &
Dad! (})

So off Sonia drove with them. I was feeling a lot better than I had.
I'd worked my way to acceptance, regrasped my hold of the moment and
finding happiness in good times now. But, while Sonia was driving my
parents, I did a bunch of research into the mechanisms of cancer, and
treatments that were available, and I found something that made the
acceptance a lot easier: a plan.

Coming up next: the plan, and a return to great days.

And thanks again for all the support, whether in person, in email, or
on the phone. Much appreciated. And sorry for the emails I haven't
yet answered; I did receive and treasure each one.

Love,
-Chris

Up and about

(originally posted on August 16, 2010)

I can type!

/** Takes a word made of lower-case letters, returns a cononical form for isomorphic comparison */
String canon(String word) {
int[] src2dest = new int[255];
int next_dest = 'a';
StringBuilder canon = new StringBuilder();
for(int i=0; i char src = word.charAt(i);
int dest = src2dest[src];
if(dest == 0) {
dest = next_dest++;
src2dest[src] = dest;
}
canon.append(dest);
}
return canon.toString();
}

I can code! :)

So last we 'talked' I was about to be wheeled down to surgery. As Sonia wrote, she managed to reach me in record time and wish me luck in person in the prep room. She's the best wife ever. (})

In the prep and the OR I met some more nurses, and I had a few minutes looking around at all the equipment in the room before they put me under. My doctor was, as always, serious. :) I don't remember going under at all. Next thing I knew I was looking at the faces of my lovely wife, my brother, and my parents in the recovery room. I quickly imagined the steps for tying my shoes, counted to five, and sang a little ditty in my head, wiggled my fingers and toes. (Can't be too sure about these things after noggin reduction surgery :). Not long after I was transferred back up to the 7th floor, west wing, room 4, the 'step down' room, with a 24-hour nurse in an office, and 3 beds filled with other post-ops. Sonia and parents come back and say hi again, having eaten, and head back home for a sleep, having been asked to let me rest. I slept a lot. A heck of a lot. 10am to 7am basically. Felt rather nice, actually. I was in this odd place just between awakeness and sleep for many of those hours, dream a bit, awake a bit, a bit more lucid dream, a bit more lucid awake.

Every few hours, as has been the routine, a nurse takes my temperature, blood pressure, asks me what my name is ("Abraham Lincoln" :) Just kidding, "Chris Thiessen") to squeeze her hands, push with my knews and toes, Where am I? (The lovely west wing of the Hamilton General Hospital on the 7th floor, in room 4) What day is it (August 16th yet? Nope, it's only 11:30pm). 2010 still? Yep.

Surprisingly, there's very little pain associated with my skull having been chopped open. Chewing's makes for a bit of soreness, but other than that I feel pretty good. The one side of my head is remarkably round right now. I mean, like basketball round. It's freaky. Apparently it will be even more swollen until 2 days after the surgery (hard to believe), and then rapidly recede. Sounds like after you exercise hard after a long lazy time, and then are sorest 2 days later. The eye on that side is crooked, so when I pry it open everything looks tilted. :)

The doctor came in this morning (still serious :) and told me that the surgery had gone well, that they couldn't be sure they'd got everything but that they'd just taken the whole right temporal lobe out (apparently better than die, for those in the know) and used a high-power microscope, and successfully tried to spare my vision. I have a CT and MRI 'scheduled' for today, meaning they could happen just about any time. After that, assuming "I'm good", I might be able to go home. I can walk straight and pee, apparently the key factors, so I figure I'll be good to go.

Time to skip to the next paragraph if you're easily grossed out. Catheters are funny. You sometimes feel like you have to pee but you never really do. Then when they get taken out you pee bubbles at the end.

The nurses around here are great. They all have good humors. Allie is like Annie from the movie, tight red curls and all, except 50 years old. Jackie is a dark-haired biker chick who cares. Keisha's an R&B singer who nurses. And Kathy's just grandmother through and through.

Nurse just came in and said I wouldn't have to wait for a MRI to get out of here, I could come back for it as an 'out-patient'. And the CT scan should happen this morning. Sweet.

There's a really sweet husband and wife kitty-corner across from me in the room. She had a tumor out as well, but is not feeling as well as I, apparently, and he was talking sweet nothings to her for a long time, telling her how much he loved her, how brave she was, how she'll be fine, and how the nurses' best days are when they see someone walking down the street healthy. Quite touching, actually.

Just called Sonia. She's coming to see me! :)

Well, moving all with my day. I'll talk all you great people later!

Love,
-Chris

Out of the breach

(originally posted by Sonia, August 15, 2010)

Hi Folks,

Chris wanted me to keep you posted after surgery, so here goes.

He was called into the OR at around 8am this morning, I was lucky enough to get 10 minutes with him before they started getting him set for the operation.

The surgery took over 3 hours. I was told by Dr. Reddy that the operation went well but that the next step was to send the tumour specifiment to the pathologist and get an analysis.

We were able to sneak in to the recovery room to get first glances at Chris, although he was groggy and fading in and out of sleep he seemed to be fine, still cracking jokes when he could.

I just called the step down room where patients are left for 24/7 monitoring and I was told that his vital signs are all in very good shape and he is getting sleep. Sleep is something that is apparently hugely needed after brain surgery as it heals the brain.

Tomorrow, Chris is scheduled for another MRI and more CAT scans to see how much of the tumour is potentially left behind.

This is all the news I have for today, we will keep you posted about this unexpected journey as we ride it together.

Best Regards,
-Sonia

Into the breach...

(originally sent on August 15, 2010)

Apparently the OR opens early around here, and I'm being called down. Time for my noggin reduction surgery.

Wish me luck,
-Chris

Day 3 in Hamilton General

The day started well before I even got to sleep the night before. Barry Billings, boss and friend at MedShare, sent me a hilarious email. Apparently the barbecue team I'm part of for this coming Friday's annual barbecue competition begged unfairness for me not being available, and the contest was cancelled. Anyone who knows me well knows I don't cook much, so it all sounds a little fishy to me. :) But apparently they started a WTF club in my honor ("We're Thiessen Fans" Hahahaha, yeah right ;) and are still going to gather for good times, so it's all good. :)

This morning I got my MRI! Good times. Like a party in a tube, bom-bom-bom-bom, chugga-chugga-chugga.

Shortly thereafter my doctor, head of the department of neurology here, gave me the results, and a metaphorical slap upside the head (I'll get to that). The tumor is much more easily seen on the MRI. Apparently it's about 5 cm long; not sure whether that means it's grown from 3cm, or just that they didn't get a good look at it earlier. It looks lumpy like cooked cauliflower. Apparently it also looks more on the malignant side than the benign. Good news is it also looks like the primary, and they haven't seen any metastasis. I'm going to get a copy and send out some pics of that thing. :) Anyway, I started pestering the doctor with good-natured questioning and chatter, trying to figure next steps out. It was clear that it had to come out, and the right temporal lobe is already nearly taken over by the thing, so apparently I wasn't using that part of the brain very much, because I don't seem to have any 'deficits'. Taking up space and not pulling it's weight. Good riddance! The surgery to take it out will likely happen tomorrow morning. About 3 hours long. A day in hospital, then home. An MRI and CT scan in the following week. 7-10 days after surgery the pathology of the removed material will be complete and I'll meet with a crack team of oncologists (cancer doctors) and neurosurgeons at the cancer-specialty hospital up the hill from here to decide the next steps, possibly including chemotherapy and radiation therapy. He says I should expect to be at least a month away from work, though it could be played by ear, and I think he's crazy. :)

Back to the metaphorical slap upside the head. Apparently I wasn't nearly serious enough. "Keep a good attitude," he says, "but this is crazy! You should be taking this more seriously!" All because I was interestedly but not worriedly questioning him, and had a smile on my face. I must say he almost got through to me, but then I decided being happy was more fun. :)

Especially since Sonia, Evan, my parents, and my brother showed up right about then. :) Twas nice indeed to see them all, especially the little guy. Sonia brought his tricycle along, so Evan happily squeak-creaked down the shiney-floored halls, scooting around the floor. Good times. Read him his favorite book, Popcorn, and hung out with the lot.

Went for a CT scan for surgical planning. Evan rode on my lap on the wheelchair.

Sometime later, Sonia, my Mom, and Evan left for home (Evan needed his nap). Ray,Laura,Olivia,and Joe (thanks for the bracelet, Olivia) showed up for some more visiting and hugs on the way back home from Great Wolf Lodge. Always good to see them.

Took a nap; was feeling unaccountably tired, so I took nap.

Dad and Jonathan came back. Went to the caf for some beverages.

Sonia came back. Dad and Bro left. Sonia and I broke out of the Hospital, found a Swiss Chalet, and had a real meal and some good conversation. Yum. And I got finally got patched through to my sister He'l'ene on the phone. (}) (that's a hug)

I looked a little strange. Have little circle stickers on my face (for positioning against the CT scan I had in the afternoon). and tubes and bandages on/in my arms. Got some funny looks, but I didn't wind up having to 'splain. :)

My great friend Mitch crashed our little party. I had to go running out the door to flag him down, because he didn't find us at first and was starting to leave thinking he'd come to the wrong place. But he brought extra good spirits, and a good-smelling little gift basket he and his wife Kate put together. Thanks, you both! You rock.

Then it was back to the hospital, some showering/brushing/etc. prior to bed, and laying on the bed writing email. And listening to...

My great friend Don Peters in Vancouver has a tradition of inviting friends over for waffle-making every Saturday morning. For my amusement, and now yours, he put together a podcast of today's waffle adventures, a mixture of laughs, sage advice, stories, and yes, waffle mix. :) Oh yes, and certainty that I won't be dead soon.

www.saturdaywaffles.com

It's about 20 minutes long. You can download it at: http://dl.dropbox.com/u/4486801/Peters%20Podcast%20-%20EP%201%20--%3E%20Chris%20Thiessen.m4a

I think Sonia and I will have to go attend Saturday Waffles someday soon!

Chris Thiessen's 3 biggest tips for hospital stayers:
1. bring a cozy blanket. It's always freezing in the hospital.
2. bring ear plugs. The walls echo, there's always something going on. Sleep is good.
3. bring a laptop and a smart phone that supports tethering (e.g. iPhone). Otherwise you'll be stuck with TV and/or the promise but non-delivery of Wifi.

Tomorrow's going to be interesting, at the very least. Surgery when I stop getting bumped. A chunk of my brain taken out. Closer to going back to the home that I love, and the work that I love.

This is all an interesting trip. I'm taking it minute-minute, hour-by-hour. Enjoying the many good moments along the way. No need to dwell in anxieties about imagined futures and possibilities, if all that can do is ruin the now. While staying engaged with everything that I can actually usefully DO, now, of course.

Again, I'm so grateful all that all of you have done to make me feel loved and thought of. You are the best parts of my life.

Love,
-Chris

Status update

Day 2 at Hamilton General Hospital almost done.

So last night I slept reasonably well. A combination of painkillers and anti-inflammatories seemed to have put the headache on hold.

I came to the hospital yesterday with the expectation of a speedy MRI, which turned into this morning, which turned into sometime today, which turned into hopefully tonight and maybe tomorrow. Hurry up and wait can wear on you. At the end of today I know little more than yesterday. For those interested, I was put on some new drugs today:
- Decadron, a chemotherapy drug used to reduce inflammation and edema due to spinal and brain tumors.
- Dilantin, an anti-seizure medicine, to reduce or prevent the hypothetical seizure-like episodes that can result from brain tumors.
From our good friend Andrea, I learned that temporal lobectomies are a relatively common option, which replaces trying to scrape out individual tumor cells with a more radical removal of surrounding tissue. Sometimes side effects, but the brain can surprise with its ability to learn around damage. I'm right-handed and perhaps more left-brained than right, which maybe reduces what impact a removal of my right temporal lobe (where the growth is seen) I could expect. I imagine the benefit is that you can have greater certainty you've removed all of the offending cells, and thus less need for chemo/radiation, and less chance of relapse. I'm leaning slightly in this direction, though I haven't discussed with the neurosurgeons as of yet (they haven't been around much today).

I had a number of visitors today, all of which I was very happy to receive. Ray and Laura and kids Joe and Olivia, and Doug and Marie Clarke, all friends good enough to be family, came dispensing stories, hugs, smiles, cards, and some books. Thanks guys. A lot.

Later my parents arrived from Manitoba via plane and drove over, followed by my good friend Mark from Fergus, and my brother Jonathan, also from Manitoba. Good times indeed. Much more talk, a few more books, some Wendy's contraband. :)

And of course Sonia spent most of the day here.

At the end of the day, I must say I'm feeling a little down. The parade of visitors is gone. Sonia's at home with Evan, and calling in I can talk to them and hear Evan's fun but not take part. Sonia's bringing him in tomorrow; I've been missing the guy. The waiting without finding out anything extra, and being away from home are getting to me. Need to spend some time re-centering myself. Time for some navel-gazing.

I'm off the food and on the IV fluids again at midnight, to maintain readiness for a possible, though seemingly unlikely, surgery tomorrow.

In spare moments I've been doing some online shopping. :) I first ordered one of the new, slimmer, cheaper Kindles, to keep me in reading material. :) Then I ordered a genetic test from 23andme.com, which will send me a tube into which I will spit and then send back. 4-6 weeks later, based on a check for man SNPs (single nucleotide polymorphisms) which correlate with conditions and metabolic characteristics, etc, I can visit their website for the details. Something I've wanted for a while, but now my own health is more of a focus, so... Should be interesting

On a side note, this is Friday the 13th in the summer. Apparently a significant day for motor-bikers, as on each of these days a large number of people on Harleys and crotch rockets gather in Port Dover on the north coast of Lake Erie. What with bikes and alcohol, it sounds like the neurology department here at Hamilton General Hospital has come to expect a sizable influx of biker dudes with head injuries. :( Sad something fun like that can result in such suffering.

Anybody can think of good jokes about tumors, I could use em. :)

Also, anybody have any experience with using MRI facilities in Buffalo, etc.?

Love,
-Chris
--

Non-fun news

I've been having persistent headaches for the last 2.5-3 weeks that were getting worse not better. They started with me quitting caffeine so I thought they'd just go away by themselves but they didn't. They were really starting to affect my sleep and general enjoyment of life Sunday I had some vomiting. So on Monday I went to see our family doctor. He was concerned and so requisitioned a CT scan. It took a couple of days, but I got it on Wednesday. This morning my doctor called me with the results. The radiologist was seeing a ~3cm 'nodular growth' in my right temporal lobe above my right ear. He was having a real hard time finding a neurologist/neurosurgeon that was not on vacation and willing to see me. Sonia left her work early and came to pick me up from mine around 1pm. We went to one of our favorite restaurants, the Old Marina, which looks out over a local lake. Had really tasty meatloaf and twice-baked potatoe. While sitting there in the sun, Dr. Kennel called. He'd found a neurosurgeon at Hamilton General Hospital. We just needed to pick up a CD of the CT scan results from the Grand River Hospital where I had it (hello? email? :-O) and bring it with us. So we picked up Evan from daycare, brought him to Sonia's Mom for the night, did the CD pickup and hared our way out to Hamilton.

Once here I got a room, and we talked to Dr. Alfonz, the nice young neurology resident, his senior, and the department head Dr. Reddy. All seemed capable and helpful.

The opinion and info that came out wasn't exactly positive. The growth needs to come out 'or it will take my life'. It's not clear whether it's malignant or benign, but from the pictures so far looks a bit more on the malignant side. I'm staying in-hospital overnight. Tomorrow I should get an MRI. It will help make the decision of whether to do a biopsy or a 'maximum resection' (take out as much of it as possible). Doing nothing already seems off the table. It's unclear when I'll be able to go into surgery, because of some money-saving OR closures. It may be this weekend, or even as early as tomorrow. If not, then probably Monday/Tuesday.

If they manage to remove it well, it still sounds like there's a high likelihood of chemotherapy and/or radiation therapy to follow.

Oh, and they've taken my driver's license away, because about 5 weeks ago I fainted and they think it might have been a related seizure, that by law requires that they request my license be suspended. This sucks, but given my job is only 3 minutes' drive away, neither is it the worst thing ever. I may even get to how long it takes to walk there or drive bike. :)

If there's anything you can do to help Sonia (or Evan), I'd ask that you do it. I'd love any visitors I can get. I may be reachable on my cell at 519-212-6530. Sonia at 226-220-5724

I don't know where this will lead. Just trying to stay in the now, take it hour by hour. Right now Sonia's driving around aimlessly trying to find me some take-out before I loose my eating privileges in anticipation of possible surgery.

If you have any questions feel free to ask them.

Love,
-Chris