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.
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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
