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
Friday, February 16, 2007
Sunday, February 11, 2007
A busy week
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
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
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...
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,
jw
After surgery, before home
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
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
The day of surgery
Jan 6, 2007
-----------Email #1-------------------
From: B
Date: Jan 6, 2007 9:33 AM
Subject: John is in surgery
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
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-------------------
Jan 6, 2007
-----------Email #1-------------------
From: B
Date: Jan 6, 2007 9:33 AM
Subject: John is in surgery
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
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?
At home or not at home?
Jan 1, 2007
We arrived into the
When we got to ER in
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
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
MRI in
Dec 30, 2006
From:
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
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
Sunday, April 30, 2006
March 1, 2006: Update #13
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).
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
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
________________________________________
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
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
______________________________________________
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
Subscribe to:
Posts (Atom)