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.
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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
