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
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