John Wolford

The first 11 days

2007-02-16T22:47:00.000-08:00

So i've done 10 days of chemo + radiation therapy, and things are going well. I do chemo+rad from M-F, and just chemo on Sat & Sun.

The first few days were difficult - between the chemo and the radiation, there is definitely a lot of change and the body doesn't like it. But god knows it does the mind best to try to handle the changes as best as possible, and then the body seems to do its best as well. Here's a brief view of my treatment to date. For reference, Day #1 = Feb 7.

Day #1: Nothing special
Day #2: My body revolts, and does its best to get rid of whatever is causing this
Day #3-5: My body relaxes a bit and instead of revolting, it just goes into slow/recovery mode. I have a light stomache ache and no appetite, and i'm not sure how to trust my body.
Days #6-7: My body climbs out of slow mode, the stomache ache subsides, and the appetite slowly returns
Days #8-Now: I feel back to 100%. I'm supposed to take anti-nausia with the chemo and then again later on when it wears out - now i just take it with the chemo, and i don't need to take it later.

That's a lot of change in 11 days, and i suspect a lot more change is coming, in some way or the other.

This is the first time that i'm experiencing a lot of this and i recognize some things in it. I recognize my initial reaction of "not liking it", reacting to it, and i recognize (happily) as the "choice" to be more equanimous with it raises its head, and sometimes it's almost like looking at the two choices and thinking "do i go with the what i'm used to (reaction) or do i go with the new one (be equanimous)?" Can you guess which one i do my best for? And it does me very well. I like to think that the better my mind can do, the better it can help my body do the best it can.

I might say it every time i write, but i can't help it: a huge factor in this is how i am surrounded, just surrounded, by support. If i'm feeling weaker and i look up (speaking figuratively) and see someone looking down at me with such care, such metta, i am immediately inspired and redouble my efforts and it helps me then and there, in so many ways.

Very soon we're going to try to hit the climbing gym. Thru the trip to India & Burma i'm down from 189lb to 171lb, and the doctors don't want me getting any lighter - and neither do i! I'd like to think it was mostly muscle that i lost, but honestly my pants do fit a lot looser these days...i suppose that's good...heh. The doctors recently said that they don't want me getting any lighter - and it's funny, Dhalie said that ages ago (since our return from Burma) and has been feeding me voluminous amounts of the most healthy foods possible. I tease her and joke that it can be *really* hard to gain weight eating healthily and if we want me to gain weight we should just head out to the nearest fast food, but she doesn't believe me. But the truth is we look closely at what we're eating and try to make sure we're getting enough of the carbs, proteins and fats and we've been lightly praised by the nutritionists that we've consulted with regards to this. So while this doesn't "save the day" it does help our immediate health as a bare minimum and whew, we enjoy it too!

Feeling fortunate,
John

A busy week

2007-02-11T10:45:00.000-08:00

A busy week
January 15 - 17, 2007 (+ a bit more)

On Monday, January 15, we went in to see my GP and get the staples removed. It's a very straight-forward procedure but a few of those staples coming out made me wonder how close this modern world was to making staples that would dissolve on their own, like the stitches that do the same. Anyway, it was good to have them removed. Now i could take a real shower, and not have to wair the hair thingy that stops my hair from getting wet.

On Tuesday we still hadn't heard from the neurosurgeon, as to what kind of tumour i was carrying - has it changed from "low grade" (slow-growing) to "high grade" (fast-growing)? We called him and left a message with his secretary, as he was in surgery at the time. He called back a few hours later, and told us that my tumour, which used to be an "oligodendroglioma" is now an "anaplastic oligodendroglioma". This means that yes, it has changed into high grade. This was a light surprise for me but it makes sense, considering the tumour looked like it wasn't growing when we left for India in October, and when we did the MRI on Dec.30'06 it had clearly "filled back in" the 50% that was removed in the first brain surgery on Feb.28'05. Three months is a short time for it all to grow back. The neurosurgeon didn't want to go into great detail about all of this, he wanted to let the chemotherapist and radiation therapist, who we were going to meet the next day, give us more detailed information. He did, however, speculate that "you're probably looking at a few years [longevity] rather than something shorter" (paraphrased).

On Wednesday we saw both the radiation therapist and the chemotherapist. In my case, it is very obvious what the avenue of action is with this tumour.
My treatment is like this:
- Starting Feb 7 (today), i begin 6 weeks of radiation therapy and low-level chemotherapy. The radiation therapy will be a daily dose, 5 days a week (not on the weekend). The low-level chemotherapy will be daily.
- When the 6 weeks of radiation therapy is over, there will be a month of "get strong again", before going to high-level chemo.
- The high-level chemo will be for 6 months. I will take chemo daily for the first 5 days of each month, and then have 23 days off. Then repeat, with the first 5 days of chemo, 23 days off. This goes on for 6 months in total.

Ok some comments on the above treatment:
- Basically this is a one-time-only for radiation therapy, in whatever area it covers - unless later on nothing else will work and that's all we can do, etc etc, and somehow it's better to do it than not.
- Years-down-the-road effects of the radiation therapy are minimal. There's a 1% chance of optic problems and ~1% chance that my pituitary gland would get damaged, requiring me to take various medication(s) that would offset the problems.
- Possible quick and permanent effect of the radiation therapy is: 40%-50% chance that i have slight issues with word-finding, speech and memory. I already notice slight issues with word-finding and memory as a result of my first surgery, and i work with it just fine. There are shades of grey to these potential problems, in how severe they can be. The more severe, the less likely.
- Temporary side-effects of the radiation therapy include hair loss in the area being zapped, and possible red skin in the same area, general fatigue and swelling in the brain, including headache. These are all "maybes", although the hair loss is more certain.
- There are no permanent effects of the chemotherapy. Temporary side-effects can include hair loss, nausea, and fatigue. Again, some people notice a lot of all of these, and some people experience nearly none of any of them.

From the medical to the personal:
As i've said before, i can't give "all the facts" without including something of how we're doing as the story unfolds. As usual, i won't be able to say it all, or say it properly. I'll do the best i can, but honestly, there's always another way to say it...

Dhalie and i are doing very well. We've had time to settle down, settle in and relax. We feel so fortunate to have what we do, in many ways. We can both stay home and share our time & space, with each other and with friends & family. My medical work etc is at the BC Cancer Agency, which is less than 2.5km away, with all of its resources (Q&A); this again means we can both stay at home, and be close to loved ones, while we work with this. And "work with this" is more-and-more becoming "work with this - and everything else". My recovery from the surgery is much faster than it was from the same surgery ~2 years ago, to our surprise and to our pleasure. I give much credit to all of those around us, near and far, who extend their well wishes, love and metta. Having Vipassana meditation, having the Dhamma, makes all the difference for us; it gives us so much more "room to move", and so much more ability to deal with this in a healthy way - which god knows, can be a challenge sometimes! It makes all the difference, all the difference; and for that we are grateful, to S.N. Goenka, our teacher, and to all others involved.

I'm going to sign off now, or i could write a small book! We'll add to this as things move along - and we'll post some of our experiences in India and/or Burma from Oct'06-Dec'06 while we're at it!

Thank you all, your well wishes do us so well, and we much appreciate it. In this situation there are a lot of things to be thankful for, that's for sure.
With many thanks, and well wishes,
jw

Another update, to two and then to you

2007-02-11T10:44:00.000-08:00

Another update, to two and then to you
January 12, 2007

I've modified the email below, taking out some of the personal bits of the recipients, and while i'm at it, so it's a bit more readable...

From: John Wolford
Date: Jan 12, 2007 12:17 PM
Subject: Re: Just checkin' in with two dhamma bros and...

Hi guys :-)

It's great to hear from both of you, and to read both your newsletters!

I don't have a newsletter, i'll just "whip it up" right here. One draft. No proof-reading. Type-as-you-think and hope for the best! Here it is:

Timing is everything, isn't it? Dhalie & i have spent the last 3 months in India & Burma, and we came home just now, just in time for this email! We had the most amazing trip, which was 2 months in India visiting her family, doing the Buddhist ciricuit (we didn't have time for Lumbini, sadly), going to the inauguration of the Global Pagoda, the TSC, where Dhalie sat and i served - it's my first course serving Dhalie, and my first course serving Goenkaji, and i got to do them both at once, wow. Then off to Burma, where i got another opportunity to serve Dhalie at a 20-day - and believe you me, sitting/serving in Burma is like nothing else, that is such a charged country, wow. Then we served 2 childrens' courses - it's not like here with approx 10 children per course; it was 100+ kids and they were serious students, it was quite something to see. Gorgeous people there too, and we made really good connections with fellow servers. Add to that the Shwedagon pagoda; one of Webu Sayadaw's three monestaries, the one in kyaukse, that had his cave to sit in; a serious sanga dana at a serious monestary with ~120 bhikkhus, where there were monks who sat/sit under Goenkaji and where they've done children's courses before; escorted by our Dhamma brothers/sisters/servers into the Sagaing hills to another potential childrens course site and other pilgrimage places. Add to that sharing it with each other (Dhalie & i) and having this amazing land and time to use as a new & safe context to learn and grow for ourselves and for each other - and wow, you have an amazing trip!

We were waiting to hook up with a few more westerners, including my mother and her partner, both sitters, to spend another month there, and then i would go sit the 45 at Dhamma Giri; but just before Mom arrived we had to cut the trip short and come home to address new issues with this brain tumour of mine. We used Bangkok to investigate and determine that, and there were angels (devas) on high who helped us determine in very short order that i needed to get home right away. In very short order i was on the operating table, for the 2nd time, and now we are at home resting, relaxing, recovering, and enjoying. One step at a time, and the info to help with the next steps are the biopsy/pathology to tell us if the tumour has gone aggressive yet, and our meetings with our chemotherapist & radiation encologist. That should be sorted out by next week, or the week after, and in the meantime i will recover for about a month before going ahead with whatever is decided.

Being home is great, and it's interesting to compare surgery #2 with surgery #1. I'm recovering way faster this time around. My mother has turned from never having sat before into a serious, solid student, which is of huge help to her, and to us, in what could be challenging times like these. We are in different places ourselves, and i'm so grateful that i have Dhalie by my side and that she is as solid as she is. We stand right next to each other, so to speak, we are on the same page, and we both see the bright path of Dhamma going straight ahead, no matter what the thorns that may come up. It would seem that every thorn can be a blessing, if it is used as a tool - and the more critical the situation maybe, the more motivated we are to do the best we can with it, and the bigger a blessing it can potentially be.

So that's the scoop from this side of the continent! Again, good timing and great to hear from both of you!

metta metta,

After surgery, before home

2007-02-11T10:43:00.000-08:00

After surgery, before home
January 7, 2007

From: Dhalie
Date: Jan 7, 2007 11:37 PM
Subject: Update about John

Hi All,

John is continuing to improve after surgery. Today he
was up and walking and was able to walk to the
bathroom himself several times, take a shower etc.

His appetite is good, he's not on any painkillers at
all. He was reading some dhamma books today, so the
vision is good. He's not hooked up to any
equipment/monitors at all.

He is still in ICU though, simply because there are no
beds available on the wards. But it's actually quite
nice, quiet and comfortable in ICU. The only problem
is that this limits visitors. He can only have 1 or 2
visitors at a time, so for now only immediate family
is visiting. If he gets moved to the wards I will let
you know and that will be open for friends to visit.
Also, he doesn't have a phone number while in ICU.

In any case he'll be home soon, likely on Wed or Thu
this week.

Please let everyone know that we're both doing great.
We sat together today for 2 hours.

Another bit of encouraging news is that preliminary CT
scan shows that the area of enhancement (aggressive
growth) of the tumor was completely or nearly
completely removed with the surgery. We still have
more detailed tests happening but this is positive
news at this stage. About 50% of the tumor remains,
and hopefully this portion is not growing
aggressivley.

I'll check in with you tomorrow.

metta,
Dhalie

The day of surgery

2007-02-11T10:42:00.000-08:00

The day of surgery
Jan 6, 2007

-----------Email #1-------------------
From: B
Date: Jan 6, 2007 9:33 AM
Subject: John is in surgery

Dear Friends,

Dhalie called to tell me that John is now in surgery. They came in at
6:15 this morning to prep him and the surgery started at 8am. It
should be done by 3 pm. After that he will be in Neuro ICU for 2 days
and no visitors will be allowed during that time.

with metta,
b
-----------Email #1-------------------

-----------Email #2-------------------
From: B
Date: Jan 6, 2007 7:24 PM
Subject: Re: John is in surgery

Dear Friends,

Dhalie called with the good news that John's surgery went very well.
He is now in the Neuro ICU, and is already talking and able to see
clearly. She said he is doing quite well, and that he is his usual
calm, happy, and relaxed self.

with metta,
b
-----------Email #2-------------------

At home or not at home?

2007-02-11T10:37:00.000-08:00

At home or not at home?

Jan 1, 2007

We arrived into the Vancouver airport and were picked up by Dhalie's sister. We drove straight to the Emergency of Vancouver General Hospital, who were fortunately waiting for us with a bed/space. Up till then, everything had been happening so fast - from Mandalay to Yangon, with the quick, kind medical service in Yangon; then from Myanmar (Burma) to Bangkok, with the amazing, beautiful and lightning-fast service in Bangkok.

When we got to ER in Vancouver, everything ground to what seemed to us to be a crawl. We instantly felt so lucky to have a "private" room to ourselves - this actually only amounted to a small space "fenced off" with a curtain, in the midst of many more of the same, with other emergency patients coming and going for the entire 36 hours that we were there.

At first we thought that things were going to move quickly. After a good chunk of time we realized that this wasn't the case, and thinking that we were basically there to quickly see the neuro-oncologist who would say "yes, make appointments with your chemo and radiation oncologists" we almost left. We were standing up to leave and one of the nurses pointed out that the neuro-oncologist had arrived and was about to see us - so we sat back down. He came over and let us know that he had looked at the MRI from Bangkok, and we were going to have to do - and i call this "door #3" - surgery! Again! For the 2nd time! This is the same surgery as i was told two years ago would only happen once. We were surprised at that. We were told that it was important for the surgery to happen sooner rather than later, and so we should stay in ER as that was the "fast track" for the surgery - if we went home and made an appointment for the surgery we would not be able to have it done any time soon, and arguably not soon enough. So stay in ER we did. Our (Dhalie's & my) space in ER quickly turned into a very nice space for us - we could sit well there, read to ourselves or to each other, and enjoy our conversation and our space together.

After 36 hours of waiting for a space/bed in the neuro-sciences ward, we finally moved up there. But you couldn't say that there was a space waiting, it was still full up there - they informed us that i was going to be their "hallway patient"! After some "persuasion" by Dhalie they moved my bed over by a window in a room with 4 other spaces/beds. I spent a short time there before i invoked a 4hr "day pass" where i could head out in the world and come back within 4 hours. The first thing i did was go and get a haircut, even before going home. As we drove down Broadway i looked out the window and it was such an odd feeling - it sort of felt like the world was "out there" and i was "in here". None of this city that we drove through was mine for the living, i was just there temporarily, and soon i would be gone back to the hospital, which is where i had to be.

When we got back to the hospital 4 hrs later we found that i'd been moved to a real bed in the ward, which was nice. Through the next several days i got out on a few more 4hr day-passes, which would basically involve me coming home for that time. One of the times involved many Vipassana friends coming over and we had a really nice group sit and visit. There were group sits at the hospital as well, again with many people joining. That room/space/spot that i had was again a really good spot for us, felt strong to us, and i was again so grateful to have a good space to be in while everything moved forward.

MRI in Bangkok

2007-02-11T10:30:00.000-08:00

MRI in Bangkok
Dec 30, 2006

From: John Wolford
Date: Dec 30, 2006 11:28 PM
Subject: we're coming back early

Hi All,

I don't know if any of you have heard any of this, so i'm going to pretend you haven't. Dhalie & i have had an amazing time together, and as the time went on it got more and more amazing. I'm not going to get into all of that right now, i have a more pointed purpose to this letter.

During the 20-day that i was serving and Dhalie was sitting, at the Vipassana centre named Dhamma Mandala, in Mandalay, Burma, i started getting a slight headache. For 3 days after the course it continued, while Dhalie & i had some of the most amazing days of our lives. Then, 3 days after the course, as we we got to the Manadaly airport to fly back to Yangon to meet up with Anna, and receive Mom & Yvonne, my headache went into "high" mode, and a few times my vision went wonky, i threw up and then i would feel much better for a short time. We almost didn't get on the plane but in the end we did. We met Anna in Yangon and we visited a doctor (who is family of the beautiful people who ran the hotel we were staying at) - actually it was 2 doctors, husband and wife, aunt & uncle of the owners of our hotel - and they set us up in short order with an appointment with a local neurologist. All of the doctors were really nice - maybe "sweet" is the better word. The neurologoist told us that the equipment in Burma wouldn't be good enough for what we needed and advised us to go to Bangkok, where everything is really modern (and cheap, and FAST). So the next day we (Dhalie, Anna & i) flew to Bangkok, where i'm writing this from right now - that was yesterday that we arrived. Before leaving we made an appointment at a MRI place for the day after we arrived, but we decided to try it same day. We got there and yes, we got the appoinmtent straight away, and it happened, and the MRI person (i forget the name of that position just now) was kind enough to look over our previous mri pics that we brough on CD and then compare them with the ones he just took, and tell us about the changes. Changes there are: a part of the tumour has become "enhanced", which means it's turned into a higher grade, maybe we just say "high grade". So this is quite important, and it means that Dhalie & i need to come home straight away so we can sort out the next step - chemo, radiation or both - with our "home doctors". It will be one or both of those. I do believe this is the end of our trip, and what an amazing trip/time/experience this has been for us. Really, blessings, blessings, it's really something.

So i think that does it. There's TONS i haven't said here, whch i loook forward to being able to say, but Mom & Yvonne will be arriving very shrtly.

Lots of love, and please feel free to forward this on to anyone you think of. I'm sure i've forgotten to include various ppl that i would love to send this to.

See many of you soon :-)
jw

March 1, 2006: Update #13

2006-04-30T09:38:00.000-07:00

From: John Wolford Mailed-By: gmail.com
To: John Wolford
Date: Mar 1, 2006 2:02 PM
Subject: Time for another update

Hello All,

Things do change, don't they? I think there's enough change going on for me to tell you about it.

So where to start... In October i started back to work - this was 7.5 months after learning i had a 7x6x4.2cm tumour in my left temporal lobe; 7 months after my craniotomy, which removed about half of it; 6.5 months after learning i had a malignant, low-grade oligodendroglioma; 5 months after learning i am chemo-insensitive, putting me in the bell curve who's remaining life hovers over 7-10
years; 4 months after deciding that i wasn't going to do chemo or radiation therapy, i was going to be in "watchful waiting", with the doctors telling me that i would probably have to reconsider chemotherapy & radiation therapy in the next 2-3 years; 2 months after dilantin stopped suppressing my simple partials, causing me to switch to tegretol; and one month after being accepted for LTD (Long Term Disability).

Every summary seems so "narrow", like such a limited perspective. Here's another one:

So where to start... In February i found out that i sat in "the rare seat" of having a very large brain tumour. Eventually, the doctors were surprised when i didn't have a glioblastoma, which would give me 9-12 months, but instead had a low-grade oligodendroglioma, which would probably give me decades to live. Then i was found sitting in the rare seat again, being chemo-insensitive, putting me into the group of people who's average life-span is not decades, but is 7-10 years. And all the while i've been sitting in the rare seat of having only simple partial seizures with such a developed/large tumour in my brain, and hearing stories of pathologists sitting around looking at my MRI reports and saying "what? Are you sure? Only simple partials? Huh..."

The above two are again a fraction of a "full summary". They are totally eclipsed by another one which i know will be just a small fraction of itself, as soon as i start writing it down:

So where to start... The last year or so has been an amazing time for me, and for many people around me. Full of change, full of change. I feel like i was shaken awake or a light was just turned on all of a sudden, and the things that have been important to me became much clearer, much more in focus, and i became so much more motivated to try to shed the things (in myself) that hold me back from them. Time, and what i can do with it, has become so much more precious to me. And the support i have been getting - everywhere i turn someone steps forward to help me, to support me, to encourage me. I say "me"; when i can, and maybe i should, say "us". My wife, my life partner, my dhamma partner, my closest friend, stands beside me, walks beside me and gives me much more than i could begin to write down here. It blows my mind sometimes, what she is capable of. She is so beautiful, in every way, and so powerful, and i stand on the edge wondering how i deserve to be showered by everything she has to give; and then i realize - this is truly a blessing. Then there is my mother. It's quite natural for mothers to have a *really* hard time with something like this, and sure enough, here was someone who others would support, in order to give me best support. But this was only in the beginning. Very quickly, looking for some way to help herself, she took a Vipassana course, and it has really helped her to help herself, not just with this but in every way, day to day. Finding it as useful, as helpful, as healthy as she did, she took a second course after some time, and she continues to use it every day, and to share it with us. She has turned herself into a huge support for not just herself but for Dhalie & i as well, and others. It is such a joy to see her glow, to see her grow; and again i feel truly blessed, truly blessed. And there are many others, who if i wrote them all here would make this update *super* long.

There they are, a few perspectives of what's been happening. As i said, they capture a small fraction of what could be said; and that's just what could be said by me - there are many others who could give their own versions, their own perspectives.

So. How about now? Well, things are again changing. I said above how the dilantin medication stopped working and so i switched to tegretol - the dilantin worked for awhile, and then stopped working. The same has happened with the tegretol - i have started having simple partial seizures again, a few months ago i guess. And the seizures themselves have been changing - i don't smell that chemical smell as much, and instead the biggest thing is a change in my awareness. Sometimes it's i just have a more distinct awareness of my body, and sometimes it's a real "tunnel vision" of awareness, which automatically zeros in on my mind-body, to the point where i can't pay much attention to much else around me. I've been logging my seizures as light, medium or heavy; the heavy ones are rare, the light and medium are more common - but
they all happen. Sometimes they leave me a feeling of nausea, sometimes a feeling of tiredness.

So. How about now? I just recently had a MRI and the doctors have come back with the good word that there is no perceptible change in the tumour - it has not grown. Short of it just shrivelling up by itself, it's the best we could hope for. The doctors guess that i'm about 1-2 years away from reconsidering/needing chemotherapy and/or radiation therapy. A year ago me being chemo-insensitive put me in the bell curve that hovers over 7-10 years; now, a year later, that curve hovers over 6-9 years. To be totally clear, i am not an average, nobody is. But what would it mean if i fell into the bulk of the bell curve, with most people? It would mean that if i die from this tumour, i will basically die in a coma, in 6-9 years. Let's call that coma 0%
functionality. And let's call me today at 100% functionality - not that i am if you compare me with 1 or 2 years ago, but let's just say 100% relative to the progressive degeneration that leads to 0%. So if i'm at 0% when i die, what percent will i be at, 1 year before my death? 10-15%? And two years before? 20-30%? Combine that with (probably) reconsidering chemo/radaiation therapy in 1-2 years, which will almost certainly lead to less functionality either by the therapy itself, or by the reasons we will be doing it (which will be increased symptoms of the tumour itself), or both. This quickly tells me that my most functional time is now, and it may not be for too much longer, if i move my attention from the watch to the calendar.

All that being said...These predictions (number of years) can change in either direction, and the eventual truth may be different altogether. Only time will tell. The bell curve that "predicts" the lifespan of someone chemo-insensitive with a low-grade oligodendroglioma - this bell curve hovers over 7-10 years and then reaches out, gets lower (less people), and reaches out to the rare person who makes it 30 years. So there's a lot of room to play. It's that thing of "what could happen" vs "what happens to most people". Again and again, the most important thing to me, the most useful thing for me, the most healthy thing for me, is "what IS happening", what is happening right now, this moment, and how am i doing with it.

So. How about now? As i've said, there are many things that this has done for me, is doing for me, having this brain tumour. It's a huge good fortune for me, in many ways, and i've indicated a few of the ways above. Here's another way that it's good fortune for me: in the sense that it is a large warning for me that yes, you, John Wolford, are going to die. I knew this before, like we all do, but now i know it in a different way. Funny what it can take, eh? And not only that, but i know IN ADVANCE. I remember when all the doctors knew was that i had a 7x6x4.2cm tumour in my brain, and they suspected it was a glioblastoma, and that i probably had 9-12 months to live. 9-12 months. How long is this? On the one hand it seemed short but it immediately seemed SUPER long, compared with what it COULD have been - for example, crossing a road and realizing a car is going to hit me and i have less than a second left in this life - maybe i would have the same changes in perspective, but i would have less than a second of them. Now i would have 9-12 months of those moments of changed perspectives, and be motivated & supported to do the best i could with them. And eventually they told me no, you have many more moments than that, probably. The average person in your situation has 7-10 years of moments. WOW. Now doesn't THAT seem like many moments, compared with none - and at the same time, there's this sense of urgency, probably for everyone who brushes with death and realizes in a new way that yes, i have a limited number of moments left; yes, my time is coming; and so yes, i'm motivated to make best use of my remaining time, however long (or short) it is. It comes up for Dhalie & i every once in a while, in conversation - how much higher quality of life we have, how much better we can do for ourselves, how fortunate we are for that; and how much more a shorter life of higher quality is worth than a longer life of lower quality - not that we had a life of low quality, don't get me wrong, it was very fine in many ways - but relatively speaking it would seem that way.

So. How about now? With all of these changes in the seizures and my general constitution, with all the considerations of how much longer i may have and how much less-than-longer "useful time" i may have, with what i am motivated to do with my current time, i found myself wishing that i qualified for LTD. As it turns out, i more than qualify, and even my claims adjudicator is wondering what i'm doing at work. It's funny - after just a few conversations of going through this with her (my claims adjudicator) she was saying "Tell me, John - why are you even AT work??" So with all of the considerations taken into account, i am going to stop working and go on LTD again. I'm so fortunate that is an option. I can't count in how many ways i've been fortunate in the past year, so many good fortunes.

It's funny - having a brain tumour is a big deal, no doubt about that, and i don't want to sound like i think nothing of it. But honestly, every time i think about it, it pales in comparison to everything that it has been a catalyst for, for everything that has come of it. I have so much, and so many, to be grateful for. Many, many thanks to all of you, i can't properly tell you everything you have done for me, everything you do for me - where the "smallest things" are so big for me, it honestly blows my mind sometimes; to my professional support, including my doctors, health insurance and Teekay; and to Goenkaji and all others involved in me being able to use Vipassana, which helps me so much in this, and in every aspect of my life.

With all my thanks,
John

PS. I'm spending the next 1-1.5 months involved in Vipassana courses and so i won't be in town, and i won't be on email or telephone during that time. You can write me, by all means, but i can only sit down to do all of my replies after mid-April, when i'll be back at home.

PPS. Please feel free to pass this along to anyone who you think would be interested in it. I'd love to include the addresses that i'm sending to but it would just be too long and i think it would be labourious to pick through it to find out if i sent it to so-and-so. So if you like, risk duplication and fwd to whoever you have in mind;
if you'd rather not risk duplication then just suggest the person to me and if i haven't already sent it to them then i will (when i get back home in mid-April).

May 24, 2006: Update #12

2006-04-30T09:31:00.000-07:00

This is the update that came after meeting with Dr. Thiessen, the chemotherapist. There was more information that came out of that meeting, but for this update I was trying to consolidate/summarize the most important parts of it.

________________________________________
From: John Wolford [mailto:john.wolford@gmail.com]
Sent: May 24, 2005 12:08 PM
Subject: Overdue Update

Hi everyone,

It's been a long time now - it feels that way to me, anyway. In terms of things we know, this update is definitely overdue. It seems that quite often I have a lot to say but if I just wait a little bit longer I'll have more questions answered. I am slowly learning that as true as that may be, I will also have more questions posed, so…time for another update. With as much info as I have to share, I will try to put it in summary form. Again, we've managed to share many of this with you already, in person, especially the medical. God knows, there are many versions of "how we're doing" - I remember one thing one time, and another thing another time.

Disclaimer: When I sound medicinally factual, it is only "as I understand it right now". I think it's happened in every single meeting that a "fact" or condition that we thought we knew, had more factors than we had been considering; and as a new, previously unspoken factor arose differently than expected, the "fact" changed. Thus, many "facts" are specific to myself, and if you know a "contradictory fact" to be true for someone else, they may not actually contradict each other - the factors that contribute to the facts may be different, and they may lead to different facts.

Chemosensitivity, Chemotherapy:

Chemosensitivity is found by genetic examination of the extracted tumour after surgery. It takes about a month after surgery to determine if the tumour is chemosensitive. If it is, then chemotherapy (CT) will almost certainly work. If it is not chemosensitive then there is about a 20-30% chance that it will work. This begs the question: what does it mean for CT to "work", at least in my case, all factors considered? They haven't done studies to show this yet, although they strongly suspect that it doesn't extend the longevity/lifetime, it only extends the time until radiation therapy is required.

In my case, it looks like the most CT can do for me is put off radiation therapy for a few months to a maximum of 1 year. Again, in my case, CT would last for 12 months. The stats say that 50% of people undergoing this treatment go back to work during CT, and 50% don't. So. Is it worth it?

Tumours can "adapt" to chemotherapy. That means that trying CT in a low grade (mine is low grade) could affect the 1-10% of the tumour that is growing, but if/when the tumour goes into high grade, the CT could have very little effect at all. So. Is it worth it?

Deciding to do CT is the first decision. We had to wait for more than a month to meet with the chemotherapist, and while we learned about RT, we couldn't make any decisions about it until we made the decision about CT. There have been many decisions that couldn't be made before knowing if I was chemosensitive, knowing the results of the post-operative MRI, etc.We will know the recommendations of our two oncologists "sometime soon", when they get a chance to talk with each other. They will almost certainly recommend that we do neither CT nor RT, and we monitor it. In the end, it is our choice. We need some time to think about this.

One more, and arguably the most important thing about chemosensitivity: it has been correlated with longevity. Whether or not CT actually works, if I were chemosensitive, it would mean a bell curve, an "average" lifetime of "decades". I've been finding myself sitting in the "rare" seat often lately, and this is another one of those times: most people in my situation are chemosensitive, and in my case I am not. This means that again, whether CT works or not, i'm looking at a different bell curve, a different "average" longevity of 7-10 years. Naturally, I am interested in what the potential is for someone in my position, what is the longest someone in this situation has lived, and the answer to that is 25 years (that's the very rare person that lives that long, with most living for 7-10 years).

Radiation Therapy

Considering chemotherapy and radiation therapy (RT), RT is the only treatment that will extend my life. On the other hand, it has potential side-effects, that can come into effect years afterwards (around 10 years or so). There is also a "low" risk that the side-effects would be immediate. Because my tumour is in my left temporal lobe, the side-effects of RT can include memory and cognitive disorders. The chances of these side-effects happening are "low"; if they happen, the chances of them being severe are "low", and the likelihood of using resources to adapt/work around these side-effects are "high". These risks are directly proportional to the size/volume of the tumour - the bigger the tumour, the greater the number of peripheral cells can be hit. A "large" tumour is anything greater that 5cm on any axis - my tumour was 7x6x4.2cm, and you can see that it is quite large. And as you may imagine, since I've been sitting in the "rare seat" as often as I have lately, "low" and "high" don't hold the same weight for me as they used to.

Alternative Treatments:

Western medicine's alternative treatments are clinical trials, which are the finishing stages to testing new treatments before releasing them as a standard treatment. At this point in time, there are no such alternative treatments for me.

There are many other "alternative treatments" that are suggested by Chinese medicine, naturopathic medicine, and more. There are strong proponents for various treatments and some of these treatments can be, or are, valid, while others are inappropriate, or money-makers, or otherwise faulty/useless. I am very fortunate to have many people close to me who are able to filter the signal from the noise much better than i. My uncle is an impassioned naturopathic doctor with great spirit; a cousin of Dhalie's has worked as a dietician at the BC Cancer agency for the last 17 years, while her husband is a pathologist, both with open arms, and open hearts; people who have dealt with things like this and have had excellent care from professionals compassionately come forward with referrals; and more. They all have a personal interest in this, and love in their hearts.

Factors of Longevity:

The following were presented by the chemotherapist as factors of longevity with respect to this tumour:
1. Age: 33. This is in my favour
2. Type of tumour: Oligodendroglioma. This is a relatively good one to have (this is in my favour).
3. Injury to brain (caused by the tumour): None. This is good.
4. Spread to other side of the brain: No. This is in my favour.
5. Chemosensitivity: No. This is not in my favour, it puts me in that bell curve that hovers over 7-10 years.
6. Size: Large. The original dimensions of 7x6x4.2 (cm) are not in my favour.
I don't know which of these factors carry the heaviest weight, or what that would mean. In any event, while it's reasonable/important to consider longevity, it's also important to realize that, at this stage anyway, it's impossible to make a real prediction. There is just so much room to play, typically 0-25 years. An easy example of this is: if this tumour had been discovered a year ago, would I still have been told 7-10? Does that mean it would actually be 6-9 now? Or on the other hand, if this had come up a year from now, would it still be 7-10 at that time? And so would that mean that I would be at 8-10 at this time? You can see the temptation, and the uselessness, of walking too far down that road, and it's one more thing that i am grateful for, that i don't feel the need to.

Evolution of the Tumour:

Right now it is low-grade. That means that only 1-10% is actually growing. At the moment we don't know that if only 1% is growing, can it be growing at different speeds? This is on our growing list of questions. If/when this tumour changes to high-grade, it immediately reduces the "average longevity" to 2-3 years (this has to be confirmed, it is on our list of questions).

Before the operation, my tumour contained an area(s) of "enhancement". Enhancement is "potential for growth", and the higher the degree of enhancement, the more concern and the greater the need/urgency for treatment. During surgery, I was fortunate to have all areas of enhancement removed. If enhancement remained, I would be more likely to do RT immediately.

About 50% of the tumour was removed during surgery. Enhancement aside, and as I've said before, this doesn't matter, oddly enough. Once the initial measurements of the tumour are taken, none of the numbers, averages, etc. change, no matter what % of the tumour is taken out (unless it is fully removed).

There is no predicting the behaviour of my specific tumour, because "I am not an average". They suspect that if we do neither CT nor RT right now, and we monitor the tumour with an MRI every 3-to-6 months, it will be 2-3 years before we have to reconsider applying CT or RT.

I titled this section "Evolution of the Tumour", and, as is usual/frequent for me, i reflect on how we're doing with it, and all of a sudden this section pales in comparison to what just occurred to me as "evolution of the patients". By "patients" i mean everyone involved in this. Many a time that i say "i" or "me" it should really be said "we" or "us". Each person involved in this has their respective things to work with, their respective personal progress to make, and their respective part to play in another's. So many times as i've been moving through an experience i have been sometimes surprised, sometimes reassured, and always so grateful, to be able to look to my side and see Dhalie walking right next to me, to see Mom, Dad, everyone, helping and sharing.

Evolution of the Patients:

There are many ways that it can be described - try to be described - and none of them complete. To (try to) sum it up: we're doing well, walking much new ground, with new challenges, hardships, and with much gratitude. As I get more exposure to people being in this situation, and of course going through it myself, I am becoming aware that there can be "stages" to something like this. There are even common sets of stages that people in general go through, some going through this set of stages, and some going through that set of stages. I'm not an expert with this, and maybe it can be put into a more detailed/subtle, or altogether different, set of stages, but for me, and my perspective, the stages have been something like this:
Stage 1: "What? Wow. Really? Wow. Huh." This was a *really* fast stage.
Stage 2: Slip into a different, quiet "space", with some changed, and some new, awareness, perspectives, appreciations, priorities, and challenges. Maybe a few more changed/new things as well ;-) This was the case when I was telling you about how the "things on my plate" had changed, the little/frilly things dropped away, and I was left with what was important, what needed my attention, what was helpful, etc. This was a time where most of our energy and effort was necessarily, and gratefully, directed inward, and to those around us, to deal with this, to help ourselves and each other. This time has been so important, so useful, for me, for us, for everyone.
Stage 3: Coming back to "a more normal place". This is where some of those thoughts, energy and effort that we were directing inwards became available for things more external - looking at alternative treatments, social things, climbing, work, reading, etc. This is when the little/frilly things start making their way back onto my plate. For some time, and more so in the beginning of this stage (whenever that was), it felt kind of "experimental". I really should say something like "coming back to a *new* normal space", again with changed/new perspectives, awareness, etc, and to be sure, new (and old) challenges, and much gratitude. As I've said before, the most important thing for me, for us, is to spend our energy on doing the best that we can right now, in this moment, no matter how much time is remaining.

I'm sure you can imagine the "shades of grey" to all of this, moving through these stages. It's a very interesting time. About a month ago, we knew we were going to have to wait for a month before we could meet with the chemotherapist, and that meant before we could make our "first choice", which would lead to the second choice, etc. Knowing this, I thought "hm, maybe I should return to work. I've been thinking about work, it doesn't seem so far away, and it seems like a month is a long time, maybe I should return." I spoke about it with a friend and after a long conversation she said (paraphrased) "You know john, this is up to you, that's what it comes down to. From what I'm hearing, it sounds like you still need time, have things that need your attention, and you should use this time for that." I'm so grateful to her. A month later, I look back and I think wow, I, we, have really needed this time, this space, it has been so good for us. It has been a challenging time in many ways, and having the ability to do what we need to do for ourselves, when we need to do it, has been so good for us. There have been many times when I've been "in gear" and all of a sudden something comes up - maybe an emotion, a feeling, an awareness - and I've had the the time and the space where I can, to the best of my ability, step back, to be quiet, and to turn inwards, to observe, to be equanimous, to help myself. "In gear" doesn't mean anything in particular, maybe I'm just sitting here, thinking or reflecting, maybe reading or listening, maybe I'm in conversation with someone, or walking somewhere, or at a social function, etc. I don't know how this sounds as I type it, but for me, having the ability, the space, to stop what i'm doing and turn inwards with an open eye has been a very helpful, significant aid for me.

I just looked at the length of this email, and I realize that I could easily make it twice as long. There are many more things I could say. As I'm typing, I'm trying to share as much as I can, as clearly as I can, as efficiently as I can. I review it and it feels like just a slice of what i could share. There are many other ways to say all of the things above, and there are many more things that I could share.

One more thing I'll say - rather, try to say: Thank you. I have so much to be thankful for, through all of this. I can't properly describe how grateful I am. To Teekay. To each and every person who has stepped forward and spoken, or sat still for a moment, and felt. To events, to conditions/truths. Evermore to Vipassana, and my teacher. Mr. S.N. Goenka. And more. I don't know if this will make sense or if it will sound silly, but i am deeply grateful, and at the same time i am so thankful to be able to feel this gratitude.

Thank you,
jw

April 3, 2005: Update #11

2006-04-30T09:26:00.000-07:00

This is the latest update that I’ve put in writing. We have since met with our neurologist and with our neuro-oncologist who is specialized in radiation therapy. I have another update to write with what has come out of these meetings, which I will write soon.
______________________________________________
From: John Wolford
Sent: April 3, 2005 8:04 AM
Subject: Update (not a short one)

Hi All,

I think it's time for another update, I've been getting an increasingly steady stream of questions.

Let me start by elaborating on my last update, which talked briefly to the pathology/diagnosis of my tumour. Prior to the pathology, since we found the tumour with the MRI on February 15, the doctors suspected that it was a mid-to-high grade astrocytoma. Mid-to-high translates in a grade 3 or 4. Grade 4 is a "fatal" tumour, that gives a lifetime of 9-12 months, with some exceptions living to an outside of 2.5 years. Grade 3 is not as aggressive as that, but is still aggressive, and a grade 3 can turn into a grade 4; that said, grade 3 is definitely better than grade 4. Neither of those grades would be a surprise when the pathology was given.
When Dhalie and I walked into the neurosurgeon's office, I was so grateful for the space we were in with all of this. By then it was how we were dealing with it that was much more important than the outcome. When we sat down the neurosurgeon actually seemed just a *little* bit cheerful, which was quite different than his regular non-emotive self. I thought that must be a good thing. We chatted about a few relevant things, and then he said "and we've got your pathology." -"Ah yes, you've found out." -"Yes, it's an oligodendroglioma. [There was only a small pause between this and the next, but let me interject. When he said this, I recognized the name as a tumour that I'd seen when I was researching astrocytoma, but I never looked into it because nobody told me it might be that. I didn't know what it meant that it wasn't an astrocytoma.] Yes, and it's low grade." Now this, I knew what it meant. It wasn't an astrocytoma? It wasn't grade 4, not even grade 3? It was a low grade oligodendroglioma? Huh…processing, processing...Huh. So this was good news, and given the chair I was sitting in, it was very good news. So we asked more questions, talked about options, next steps, and such. I again found myself grateful, as we didn't start laughing and smiling uncontrollably etc - for me, the good space we were in while knowing the good news reflected the good space we were in when we walked in the door.

And now the details, where to start? How about timelines. Not having researched oligodendroglioma, I had no idea what the timelines were like. I've learned that it can be very hard to get these kinds of details from your doctor, it's like pulling teeth. He presses that I am not an average, and it is not a prediction. After it seemed I couldn't get any kind of a timeline from him, I finally asked him what was an age that he didn't think I would reach, what's an outside limit. He finally succumbed and conceded that I would probably not reach the age of 80. That seems so far off my roadmap that it almost doesn't mean anything to me, especially when we consider how many people without a tumour don't reach the age of 80. So I pressed harder, and finally he said that the average - and I am not an average, nobody is - is 7-10 years, and at the same time it could easily be decades. They simply can't predict, it is very case-by-case. In a way, that's true for all of us. Anyway, it increases the potential from 9-12 months to decades - I don't have to tell you, I loooooove that one.

Next steps. They're testing the part of the tumour that they extracted, to see if it's chemo-sensitive. At this point we'll find out in 1-2 weeks. If it is, we'll go to town with it, for 2-3 months. We hope it is chemo-sensitive, so we can treat/reduce the tumour further. Chemotherapy has come a long way since I watched a movie a dozen or more years ago, where you sat there wondering if chemotherapy was really worth it. There are people who get quite sick & debilitated from it, and there are people who don't feel so good the day they get it, and then feel great the next day and go into work. Believe me, I'm hoping I'm the second one, both for feeling well and for coming into work. But we'll have to see - and there are shades of grey in-between those two.

If it's not chemo-sensitive now then they'll bank/preserve the tumour and then can test it again when new chemotherapies come out. Maybe it will be chemo-sensitive to future chemotherapies. And we'll also consider radiation therapy. Now our neurosurgeon said there was a very slim chance we'd do radiation therapy. Why? Because there are consequences that can come about 10 years down the road - it can cause cognitive and memory disorders - and since I may be around for decades, it begs the question "is it worth it?" I don’t know everything yet, and I want to learn more, but right now, knowing what I know, I choose not to have radiation therapy. We'll take that step if we come to it.

And finally, it won't take even a decade to make some serious progress in medical technology, therapies, etc. Again, we shall see.

So if no chemotherapy, and no radiation therapy, then it will be "do nothing and wait, and monitor it". We'll be monitoring it no matter what, of course. In this case it will be "ok, get back to living your life now", which is of course the subsequent stage to any of the above therapies.

WHEW. There's the update. You can see why I called the last one "Quick Update", eh? Heh. And finally, a part of every update that I can't help myself giving, the "wow, how much good can come from something like this?"

I wonder if i'll stop being surprised at the number, the amount, the power, of all of the good things that are coming during this time. This is looking more and more like that bump in a long road, and it's had a huge effect, it's changed a lot of things, it's touched a lot of things, inside me and around me. I don't believe in "accidents", i think of it more like karma, and not all things that happen are "good", but all things can be used for good, used as a tool. I've said so many times, to so many people, that "i know that things like this can go differently at different times, for every person", and then right after saying that it's "i feel so fortunate that we can be where we are with this, it means so much to me." So this thing, this event, this time, is being used as a tool, used as a bump in the road. And as big as the bump is, and as hard, as miserable, as dark as it could have been, it has been that strong, that positive, that amazing. I feel so blessed to be able to keep my eyes open during this whole thing, and i feel so blessed to be surrounded by people who have done the same. I recognize again and again, and am so happy, that nobody can give something they don't have, and what we give, we also get instantly. As a recipient of all of this support, it does so much for myself, and it also makes me happy for everyone around me, who is giving so much.

Oh, yeah. "Everyone around me." I am very appreciative of everyone around me, and at the same time I am keenly aware that in some ways, it can be harder for others than it is for me. Take, for example, and this is an easy example, my mother. She can feel quite powerless, with so much at stake. This is probably the most tramautic thing in her life, to date. I know that she would trade places, if she could. For certain others around us, in our family etc, the best way that they can support me is to support her, and I haven't had to tell them that. We're very lucky to be in a network of support that supports itself. As for my mom - I told you before that we were going to a Vipassana mediation course, which we got back from last week - we had a great course, by the way. Mom has been interested in Vipassana meditation for years, and has "just not found the time" for it. She saw what it was doing for us, and she was also looking for a tool for herself, so she "found the time" this time around, and she came to sit it also. During the course, you don't talk with anyone else (students), and I was wondering how her course was going. On the last day of the course, when we can finally talk with others, I looked forward to seeing her. Approaching her, as soon as our eyes met I knew she had a good course, and that meant so much to me. As useful as Vipassana has been for me during my life, and during this time, it means so much to me that she now has it for herself. So in many ways, this course was excellent timing.

It's funny, we had two friends over the other night. They loved the good news and they wanted to come over and share it in person. At some point in the evening they asked "so what do you want to do in the next 10 years of your life?" I answered immediately - the things during this time that i've learned, that i've used, that i've not been able to take my attention away from, these are things that help me to be more present, more centred, more honest, more balanced, more happy, and ever more grateful. I've seen that these are things that i want to be present, that will be so helpful, when the end of this life comes. These are also things that help me immeasurably in the here-and-now. I want to be sure that, for my own sake and also for those around me, I continue to use what is given to me, what I've learned, what i have, and what I can develop, to do the best i can, for now and for later. They were quiet for a few moments, it looked like they were at a loss for words. Then with a smirk, and as a joke, they asked their question again, more specifically, and sarcastically - "so, do you want to go skydiving? Do you want to go to France?" and we all chuckled at that. And I answered yes, that too :-) There's lots of good climbing in France, I don't care about skydiving. Oh, speaking of which, Dhalie & I went climbing the other night, our first time on the wall since this all came down, and as good as relaxing/recovering was, getting on the wall felt *really* good :-)

I know it's not necessary, and it's also not possible to voice it properly, but i can keep trying: thank you, thank everyone, and indeed thank you Teekay, for all of your help with this. Your help has been an enabler, it has helped us deal with this in a more healthy way.

To meaningful bumps in long roads,
jw

March 11, 2005: Update #10

2006-04-30T09:24:00.000-07:00

And now the good news, in short/summary form...
______________________________________________
From: John Wolford
Sent: March 11, 2005 5:27 PM
Subject: Quick Update

Everyone,

We had our appointment with the neurosurgeon this morning to get the pathology results. Relatively speaking, the news is GOOD. It is a slow-growing, non-aggressive malignant tumour.

I've told you about the four Grades I-IV assigned to astrocytoma tumours. It was suspected by the doctors that my tumour was one of these. It turns out that it is not an astrocytoma, it is instead an oligodendroglioma (OGD), which is another type of tumour. OGD only come in two grades, low or high. I'm very happy to be able to tell you that it is a low-grade OGD.

It is still unknown whether or not I will need - maybe a better way to put it is whether I can use, chemotherapy. It will be about a month before we know if the tumour is chemo-sensitive. If it is then we can do follow-up chemotherapy to further reduce the volume of the tumour. Otherwise we will look at alternatives: radiation therapy or delaying treatment altogether.

It's important to realize that there are still no guarantees - in fact there are none for anyone, to be sure. And we still have some unanswered questions, no real roadmap, etc. Nevertheless, I am very pleased to be able to give you this update, very grateful.

I don't want to sound like I keep repeating myself but I can't stop myself - thank you all for your continued support, your well-wishes. They are invaluable for me, to be sure.

Many thanks,
John

March 11, 2005: Update #9

2006-04-30T09:23:00.000-07:00

Getting closer to the truth….

______________________________________________
From: John Wolford
Sent: March 11, 2005 9:30 AM
Subject: Going in for the update today

Hi Paddy, I just left a voicemail for you at home. We're going in to see our neurosurgeon today at 10:15AM. We'll come out there with as much information as possible, including the pathology of my tumour. At 1:30 there'll be family coming over to receive the update from us, and you're more than welcome to come over for that too. If you're not able to make it then no worries, we'll see you soon and we'll post an update today as well.

Looking forward to brunch :-)
jw

March 11, 2005: Update #8

2006-04-30T09:21:00.000-07:00

Still thinking a Grade 3 or 4
______________________________________________
From: John Wolford
Sent: March 11, 2005 8:06 AM
Subject: RE: How are you feeling

Good morning, good morning :-)

Yeah, I did get some of that good sun yesterday, wow. I went out with no jacket! Keerazy days %^)

Yeah, I agree, driving around collecting numbers is the best. We did that with a friend the other day - it's also a good way for me to get out, be able to walk around a bit, be able to sit down a bit, etc.

You know, I don't feel any headaches. I feel my head, to be sure, and it's still a bit swollen, but it doesn't ache. Happily, there's not a lot of muscular activity in the skull area, so it doesn't stay painful for as long if say the operation tore through a muscle group. I look forward to it all getting back to normal, in the meantime it's no real bother.

Gotta go get ready, so talk to you soon,
jw :-)

March 10, 2005: Update #7

2006-04-30T09:19:00.000-07:00

Still thought it was Grade 3 or 4
______________________________________________
From: John Wolford
Sent: March 10, 2005 10:38 AM
Subject: Thank you

Dear A and B,

As you know, I was diagnosed with a brain tumour on February 15th and I had surgery on February 28, to remove as much as possible. The operation went well and we have an appointment with the surgeon on Friday, where we will learn the pathology/diagnosis, to find out what kind of a tumour it is. We may have to wait for our meeting with the neuro-oncologist to find out what the roadmap for treatment will look like. That meeting will likely happen at the end of March.

There is an immense amount of support that has risen to help me with this. I never could have imagined the value, the power, of this support from friends, families, professionals - what it does, not just for me, but also for the people giving it. I am so thankful to be able to say that Teekay is an integral part of this. I have developed significant relationships with people throughout Teekay, and I feel a bond with various groups, teams and with Teekay itself. I reflect on this from time to time in "regular life" and now it comes to me again, in spades.

A, I understand that you are frequently asking about me and following my progress closely. I appreciate that you are answering my questions quickly, clearly, and caringly. I want you to know that I feel your support, and Teekay's support, wholeheartedly. I wish I could properly convey how much your support is doing for me as I work through this. It is nothing I could have expected, asked for, or even hoped for. Thank you for your time, efforts, and goodwill, they are very positive forces for me and for the people around me who are involved in this.

B, I again struggle to convey how grateful I am for your help, your goodwill, your support, during this time. Your flexibility, your responsiveness, your obvious caring and your extended arms make me really feel part of the "Teekay family", something I would never have thought possible before joining Teekay. Thank you, B, thank you.

Not only have I never been in this kind of situation before, I've never known anyone who has been. I am learning things from this that I never would have guessed. I know that different people could respond differently to this at different times, and I feel very fortunate to be where I am with it. I can see how at first glance, or from a distance, this could seem 100% dark, sad, tragic, etc - in actual fact this is not so, not even close. There are many ways that qualities of my life have risen with this, deeply and significantly.

I look forward to this being a significant bump in a long road. I can't say it's something I would have chosen, and at the same time there is much I am grateful for. I need to be patient with myself, with this, and at the same time I invite a speedy recovery. I'm pleased to say that part of my happy recovery is sitting back down at my desk.

Clearly, if I wrote down the different ways that Teekay has stepped forward - individuals, groups, and Teekay itself - this letter would easily be twice as long! I am so touched by everyone, and thankful to everyone.

If you have any questions or would like to talk about any and all of the above, I would be more than happy to do so. My "Out of Office" is turned on with my email account, but I am checking my account regularly.

Very best regards, and many thanks,
John

March 8, 2005: Update #6

2006-04-30T09:16:00.000-07:00

At this point we still thought it was a Grade 3 or 4 astrocytoma.

From: John Wolford
Sent: March 8, 2005 11:44 PM
Subject: Another update from John

Hi everyone,

Seems like a good time for another group update. I'm slightly nervous about flooding large groups with emails very often, so I'm trying to balance sufficient information/update with proper frequency. If you know anyone else who would like this then please feel free to forward it on.

What's new. Well my recovery continues quite well, my energy levels rising daily, and my relaxation levels remain very good (that's putting it mildly) at the same time. I've been for some nice walks and enjoyed the beautiful weather out there, and after a nice walk it feels really (REALLY) good to have the time and space to return home, sit/lay down and relax in spades.

Yesterday was the RO26SD (Removal Of 26 Staples Day). We went in to our GP, and we remembered to bring the staple remover. When my doctor took the staple remover out of the bag, I quickly became VERY happy that we didn't try removing them ourselves (read Dhalie trying to remove them). The part of the remover that we thought was the handle was covered by a plastic bit - Dr Ross pulled off the plastic and it turns out that what we thought was the handle was the clasp/scissor bit that grabs the staple and the part that we thought were (big) staple-remover levers were actually the handles! Whew….

Today we were able to get an appointment with the neurosurgeon to find out the pathology/diagnosis of the tumour, and that appointment is on Friday, 10:15AM. This will likely be the last time we meet with the neurosurgeon. We probably won't get a detailed roadmap for therapy/treatment, that will come from the next person/group we meet with, the neuro-oncologist(s). My personal roadmap remains the same: be very present and honest with myself in the here-and-now and pay keen attention to what's "on my plate", with the tools I have at my disposal. Speaking of which, we're going to go sit a Vipassana meditation course from March 16-27 (some of you have asked me a bit about it and I'd be more than happy to discuss it in detail with you individually and/or you can go check out www.dhamma.org). It will likely be on our return that we meet with the neuro-oncologist and get a detailed approach to therapy/treatment, maybe we'll learn the Plan A, B and C (the treatments can change based on my and/or my tumour's response to the treatment).

Oh, and the "photo album" that we received is really something else, I love it. We've actually put it into a photo album, it means I can look through it without standing up, heh. I snickered and was happy *i* wasn't in that album - at the same time, you'll be happy to know that the same guy who can easily wind up dancing half-naked in a hoola-skirt at our department outings can't bring himself to use this album as ammunition for future outings.

We want to thank you all for your support, your well-wishes. We are very touched, and heartened, by them, and I know for a fact that they are helping us tremendously.

Many thanks,
John

March 4, 2005: Update #5

2006-04-30T09:12:00.001-07:00

At this point we still thought it was a Grade 3 or 4 astrocytoma.

-----Original Message-----
From: John Wolford
Subject: We're back at home!

Hi everyone :-)

I came home yesterday (Thursday), and my fingers are on the computer again (I asked Dhalie to bring it into the hospital and then I barely touched it, heh).

I know Dhalie’s been updating you for the past few days. It’s been an interesting few days since I woke up from surgery – I don’t know *why* I thought I’d just hop out of bed and start cruising around, put on my helmet & gloves, etc. As it turns out, having brain surgery requires a fair bit of recovery time.

My energy seems to come in waves. In my energetic phase I can easily get up, walk around (like from the bedroom to the couch) and do a bit of email, talk on the phone a bit, etc. In my downtime phase it feels *really* good to lie down and close my eyes and just hang out inside my body and relax. I know that might sound like it could be boring but not now, not now, it feels really good to do that.

Diagnosis/pathology of the tumour will come next week. I’m looking forward to getting it, and at the same time it doesn’t change anything that I do for now (walk, relax, etc), as I need to wait for 3-4 weeks after surgery for the skull's recovery to complete before following up with the appropriate treatment. Staples (not stitches) will come out on Monday – did Dhalie tell you that the staple remover is...with us?? We will take it to my GP and she can remove the staples (I won’t let Dhalie do it, I forbid it).

We’ll let my energy levels dictate my visits etc. In the hospital it was really nice to see everyone when they came in – I would just get up to say hello and then tilt my bed into sit-up position, heh. Right now it feels quite important to get enough rest etc (for Dhalie too!) so we’re going to keep the visits light for the first few days – emails are great :-)

We’ll keep you posted, to be sure. When the energy levels rise I’ll let you know, and I also look forward to being able to visit people myself! It will all come in good time.

Talk to you soon :-)
jw

March 1, 2005: Update #4

2006-04-30T09:12:00.000-07:00

At this point we still thought it was a Grade 3 or 4 astrocytoma.

-----Original Message-----
From: Dhalie
Sent: March 1, 2005 11:29 PM
Subject: Re: Update - Successful Surgery

Hello Everyone,

John is continuing his speedy recovery. He was moved out of ICU this afternoon to one of the wards.

He is in the Jim Pattison Building (that's the new big tower), on Ward 6B, Room 6640. He has a phone in his room, and he'd be happy to take calls at 604-875-5400, ext 60306. Also, visiting hours are from 11am to 9pm, for anyone who would like to visit.

He's been reading Climbing magazines, playing/working on his laptop (offline of course), and he wanders down the hall on his own to refill his water cup with ice water. He's also been quizzing some of the nurses with various, very detailed and hypothetical, trivial pursuit type medical questions...causing most of them to say "I've never been asked that before, I'll have to look that up and get back to you." :)

We're expecting that they'll discharge John on Thursday morning. So just 1 more night before he's back home.

Dhalie

February 28, 2005: Update #3

2006-04-30T09:05:00.000-07:00

At this point we still thought it was a Grade 3 or 4 astrocytoma.

-----Original Message-----
From: Dhalie
Sent: February 28, 2005 11:11 PM
Subject: Update - Successful Surgery

Hi Everyone,

Just to update you all, John had his surgery today, and it went well. It was a long day! We arrived at VGH at 8:30am for admitting. Then John was in Pre-op where they put him on a saline solution and there was more waiting. After that John was moved into the Operating Room where he was put under general anaesthesia, and it was about 11am by that time.

His surgery was about 5 hours, then he was sent to the Recovery Room to wake up. After that he was sent up to Neuro-ICU, where he is still currently.

We spoke with the surgeon, who was able to remove about half of the tumor, which is now sent to Pathology. We'll be awaiting those results, which will be available in about a week.

The surgery went well and there were no complications.
John is talking, and able to open his eyes. His head is all bandaged up and it looks like he's wearing a white turban. He's already asked me to bring his laptop and a stack of DVDs in tomorrow! :) His blood pressure and heart rate are good. The nurses are impressed with John considering he just had his surgery today.

John will be moved to a regular room (and out of
Neuro-ICU) sometime tomorrow. John's family is requesting that we reserve Tue. just for family visits, with friends and family visiting on Wed. I'll email out his room number when I have it.

Come and visit on Wed if you are able to. Visiting hours are 11am to 8pm once he is out of ICU.

Talk to you all soon,
Dhalie

February 27, 2005: Update #2

2006-04-30T09:01:00.000-07:00

By now we had read our neurologist's report, and we knew he suspected, and so we did too, that it was a mid-to-high grade astrocytoma (Grade 3 or 4). A grade 4 would give me a lifeline of about 9-12 months, with rare individuals living to an outside of 2.5 years.

I wrote the email below after going into work and giving a verbal update to the IT/Computer Department (the department i'm a member of). This verbal update included the information in the Preface above, and it included “how we were doing with it”.

-----Original Message-----
From: John Wolford
Sent: February 27, 2005 11:08 AM
Subject: Thank you

Hi everyone,

Pretend this email is addressed to you. This is one of those times when the efficiency of sending a mass email cannot be turned down!

We really got a lot out of coming in on Friday. It was really nice to see everyone, it feels like a looooong time since Tuesday, Feb. 15, when we found out about this. We've done a lot of sharing, discussing, answering questions, over the past few weeks, and i can honestly say that i never get tired of it. It's good to see a furrowed brow relax as unknowns become knowns, and it's really good to see the weight come off the shoulders of someone as the understanding comes that "wow, there are a lot of good things here".

It's funny, i was wondering what it would be like, talking to the entire IT dept. I was thinking "What would it be like to do a presentation on the Vessel Release Binder to the whole department?Will this be the same or will it be different?" Maybe it's what i've got on my plate right now, and the plate is too full to have room for getting nervous about "presenting" to a large group; or maybe it's because the more heartfelt the topic, the more connection i feel with the people involved, and so the easier it is to share; or maybe it was Darin's timely jokes/jabs that kept the good energies flowing ;-) Whatever it was, i felt really good about it, and i thank you for taking the time out to join us.

I can't say it properly, but i can try: Thank you, thank you, thank you, for your words, your emails, your prayers, your well wishes, your thoughts, your support. These are always good things, and in this time and space i am coming to learn just how powerful they can be. Thanks too for the gifts on Friday, they are very personal and fun, i look forward to a rapid recovery with them!

A quick update: My surgery is scheduled for Monday morning (my admission time is 8:35AM). We'll keep you posted. I should be back at home by Thursday, plus or minus, and i'm sure that my withdrawl from email will be much stronger than my need to rest, heh. If not, Dhalie can do the typing and i'll just nod my approval ;-)

One last thing - i'm sending this from my john.wolford@gmail.com account. I will still check my TK email but i will be turning the "Out of Office" on so non-IT persons in TK realize i'm out of the office and nothing slips through the cracks. You can send emails to either my gmail or TK account, and i'll get it.

:-)
jw

February 16, 2005: Update #1

2006-04-30T08:59:00.000-07:00

This was the day after finding out i actually had a tumour. This was before we were closer to being "fully informed", it was as best we knew it at the time. We hadn’t read through our oncologist’s report on the MRI, and so we didn’t know that it was suspected to be a mid-to-high grade (grade 3 or 4) astrocytoma.

I sent copies of this email/update to friends, family and work colleagues.

From: John Wolford
Sent: February 16, 2005 12:52 AM
Subject: Medical update

Hi Dharm,

Time for an update. We don't have all of the answers yet, but we have some. Things are moving really quickly, now. We had Maecan & Dana, Mom and Yvonne over tonight, and we called Dad and put him on speaker phone, so it was a real "group session".

My MRI came back, and i have a "large" tumour in the left temporal lobe of my brain. They don't know exactly what kind it is, but it's large enough (6-7cm) that it needs to be removed immediately. I have an appointment tomorrow with the surgeon, and i expect it will be scheduled to happen within a week (the actual surgery that is, not the scheduling - the scheduling may well be done by tomorrow when i see him).

So the surgery will happen within a/the week. I'm looking at a hospital stay of 4-5 days, and then perhaps another 3 weeks recovery at home. The surgery is "common" and "very safe". Depending on the type of tumour, and they'll have all the unknowns answered when they get their hands on it, i'll have different treatment options, including combinations of chemotherapy, radiation therapy, or none.

The different scenarios that could be the case for me are 3-fold. This is put "simply", as Dhalie & i understand it from our meeting with our neurologist.
1. It's a benign tumour. This means a "good" tumour, which is there, can be safely removed and it will not grow back, and if it does it won't be a quick growth. This is the most desirable out of the three. It's also unlikely.

2. It's a "bad" tumour but not the worst kind: astrocytoma. In this case they have very good success rates for removal and treatment into "remission", which can mean it's not an issue for me for many years, 10 seems to be a common number of years for this. It is most likely this type of tumour that i have, based on a few factors, age being one of the biggest.

3. It's the "worst" tumour - i'm not sure of the name just now, i think it might be glioblastoma. It is not as likely to be this as it is to be #2 above. This one is harder to treat, is always fatal, and has a much faster timeline. It is different for different people, but it is usually fatal within 2-3 years.

The tumour will be identified before i wake up from surgery (basically immediately). The treatment after the surgery depends on what kind of tumour it is. I will likely be off work for a good month, maybe less, maybe more, depending on how my treatment is going and how i feel.

I expect you'll have a variety of questions. Please feel free to ask any & all questions, and you can ask or talk to myself, Dhalie, Mom, Dad, Maecan, Dana - basically anyone. Everyone is in the loop, and everyone will do anything they can to help with it.

Sorry for the bad news, it was a surprise to us too. Like i said, the whole thing will be a lot more complete when the tumour has been extracted and identified.

We'll keep you posted. There's a fair bit that i haven't written here, for example "how i'm doing with it", etc. I'll save that for another email/talk. We certainly feel very fortunate to have the family we do, i think everyone feels that way right now. In some interesting ways my "quality of life" has gone up as i turn to face this stuff. It's interesting.

Lots of love, bro :-)
jw

Preface

2006-04-30T08:27:00.000-07:00

Preface
My email updates start on May 16, the day after we found out that I had a large tumour of some sort in my left temporal lobe. Let me now give a description of what happened before that, from the first sign of this tumour.

Since I haven’t mentioned it in any of my updates (indeed, there are many things that I haven’t mentioned in any of my updates), I would like to do so now: all of our appointments with the doctors have been very productive, in a variety of ways. In general, I can say that my doctors (and nurses, in the hospital) have been very helpful, patient, responsive, informative and understanding.

First Episode
On December 24, 2004, I jogged a few blocks from my Teekay work building to a friend’s work building, to pick up a gift. When I entered the building, I all of a sudden smelled a really strong smell, like a medical, chemical, or cleaning-agent type of smell. I didn’t recognize the smell. I started to feel woozy, and although I have never passed out before, I suspected that I was going to pass out. I made for the elevator, and made it there. Going up in the elevator I could still smell it, and I wondered if I would make it to the top. I made it to the top, and by the time I stepped out of the elevator, the smell went away. In retrospect, I find it odd that I left the building without wondering why/how the smell had gone away, as I didn’t smell it when I took the elevator back down. Later on, my friend told me that she thought I looked a bit “out of it” when she gave me her gift.

In Korea
The day after my first episode, I flew to Korea, to help set up the computers on a new Teekay ship. My first day in the shipyard I was in the office sitting at a computer and all of a sudden I began to smell the same medical, chemical, cleaning-agent type of smell, and I was woozy. Woozy means I felt like I was part in my body, and part disconnected from it. I could talk, but only slowly. I could move, but I couldn’t do anything intricate/complicated/subtle. I managed to ask if anyone could smell something, and someone tried, and couldn’t. This and all subsequent episodes lasted 30 seconds to 1 minute, approximately.

Later on in the same day, we were onboard the ship and sitting at a computer, and again, the smell, and again, the woozy feeling. Again, nobody could smell it. I knew at that point that this smell was specific to me, not to the room I was in. I figured it must be coming from inside me, but it wasn’t until I was back in Canada, about 10 days later, that I was able to get someone to smell my breath. For the remainder of my time in Korea, I had a few more episodes, and never was there someone around to try to smell my breath.

Back In Canada
By the time I returned to Canada, we (Dhalie & i) had an appointment booked with our GP. Before and after that appointment I had the opportunity for someone else to smell my breath and no, nobody could smell anything. An important change in the episodes upon my return home: I could smell the smell, for 30 seconds to a minute, but I wouldn’t feel woozy – I would be 100% in my body, be able to talk quickly, move quickly, etc. Another change is that after just a few daytime occurrences in Canada, it moved to bedtime – I would only have an episode just before I fell asleep. The frequency was erratic – sometimes it would be every night for a few nights, sometimes every other night, and sometimes there would be several days in-between episodes.

My GP’s take on it (paraphrasing): “It could be this, this, or this. Or, there’s the off chance it could be something neurological. So let’s get the blood tests going, and let’s make an appointment with a neurologist, just in case. When we nail it down, or it goes away, we can cancel the appointment with the neurologist.”

Well, we didn’t nail it down, and it didn’t go away, and so we went to our first appointment with Dr. Woolfenden, the neurologist. Dhalie came with me, and has come to every appointment that I have had; this has been really good, because while I can give my utmost attention to the doctor, she can interject with good questions, clarify things, and take notes. By the end of this appointment I had been diagnosed with a simple partial seizure; the smell is known as an aura. At this point I was decreed unfit for driving and belaying – I might have a more sever seizure, and that could be very dangerous for myself and for others, if I were driving or belaying. (When I am belaying I am helping a partner to climb by controlling one end of a rope, the other end being tied to the partner as s/he climbs up a high wall. If s/he falls, I save her life by holding my end fast. If I had a seizure during this time s/he could die.)

We were really happy to have had such a speedy diagnosis of the simple partial seizure. It was a very good choice of our GP to have this arranged, even though she thought it an unlikely outcome.

After this first appointment, on the advice of a friend, we resolved to write down questions for the doctor before the appointment, so that we would be more organized, and wouldn’t forget to ask anything. We have done this since, and it has worked very well for us. We also asked for a copy of all reports that related to our appointments, which can be helpful to review after the appointments.

In short order I had an electrocardiogram (ECG). The ECG indicated that yes, there was some abnormal activity in my left temporal lobe. It doesn’t say anything about what the cause is, it just points to an effect. At this point Dr. Woolfenden referred me for an magnetic resonance imaging (MRI) appointment. He told us that (paraphrased) “there is a 70% chance that we won’t be able to find the cause, but we will be able to determine that the cause is nothing urgent (not a tumour). There is a 5% chance that you have high-grade astrocytoma tumour, which is one of the most serious types of tumours one can have – it is fatal, giving 9-12 months, with the rare case lasting 2.5 years. And there is a 25% chance that it is something in-between.” We were to wait for the MRI department to contact us to schedule an appointment, and the waiting list for the MRI is usually 3-4 months for someone like myself (age, types of symptoms, etc).

We walked out of there aware that there’s a bigger chance that I’d fall in the 70% than the 5%. While we weren’t super concerned about the rare 5%, it did sit in a corner of my mind, not totally out of sight. We also had a copy of Woolfenden’s report, and noted that he had asked the MRI schedulers to try to get me in within 3-4 weeks instead of 3-4 months, if possible.

We considered getting a private MRI, knowing the wait-list could be so long, and this could, even at 5%, be something very serious. We decided to wait for the MRI schedulers to call us.

A few weeks later (this is a normal timeframe), the MRI office called me for scheduling. Again, things went faster than they could have: she put me on hold for about 4 minutes, and when she came back, instead of 3-4 months it was “can you come in the day after tomorrow?” Wow. That’s really quick.

Dr. Woolfenden had told us that it would take about a week for the MRI results to come back to him, and we would meet with him about a week after that, and if there were a need to come in sooner, they would call us. So the best scenario is, they don’t call us and we see him 2 weeks after the MRI. It was quite the opposite of that. I had the MRI on Thursday, and on Monday I got a call that said “please come in tomorrow, at 6PM”. This meant that the MRI results were rushed to Woolfenden, who was staying late to see us because he was booked during the day. Not good news.

On Tuesday, February 15, I left work at the end of the day without cleaning up anything, expecting to come in the next day, like any other day. From work we went to see Dr. Woolfenden, who informed us that I had a very large tumour (6cm x 7cm x 4.2cm) in my left temporal lobe and it needed attention immediately: I would have brain surgery as soon as possible to remove as much as possible, and then subsequent treatment would be decided upon: chemotherapy and/or radiation therapy.

Wow. A very large tumour. Wow. What does this mean?