"I want to ask you a question," I said to Tracey. "If it had been you who was in my position, how would you have reacted when the oncologist suggested going back on the full dose of Avastin?'
I asked this because I had seen concern in Tracey's face when he put it to me.
On the way to the hospital I had said, "there's no way I'll ever be going back on a full dose of Avastin. It would destroy my kidneys within weeks."
It's not the first time I've said it and it was something that we've always been certain about. But that was based on the premise that kidney damage was the overriding concern.
"I can't answer that," she said. "Not in a meaningful way."
"Because I'm not you. I see daily what's happening to you, but I'm not on the inside. You have to be on the inside."
She was right. Unless you're exactly the one who thinks the thoughts, wakes with the conscious realisation that you're still alive, feels which limbs move and which don't want to and the cramps when you move, feels the tremors in great waves down the arm and right side, feels pulsations in the left arm, feels the surprise twinges and dull pains in internal organs, feels the seizures and the headaches when they come, feels what it's like to stand unbalanced and what it's like to come crashing down to the floor and lie helpless with broken bones, feels what it's like to surrender bit by bit almost every freedom you had, feel the emotional pain of putting someone you love through a terrible form of hell with no idea how and when it might end – it's impossible to say what decision you would have taken. And those are just for starters.
Certainly it had to be my decision. Yet when it came to it and we discussed the pros and cons with the oncologist, I accepted it immediately. I knew it was right.
So, you might think – it's a no-brainer [I hate that word but it describes it]. Of course you would choose it.
Not so fast. It's not that simple.
It's been interesting – and instructive – for me to see reactions when I said I was going back on the full dosage. They're the right reactions, but I'm not sure if they're for the right reasons. That was my fault.
It was misleading, now I see, when I said the oncologist felt that there was a good chance the kidneys had stabilised. He didn't mean that the condition of the kidneys had improved, or had reached any sort of plateau. We have had only two proteinuria tests done following the cutting to half of the Avastin dosage. A sample of two is far from adequate to talk about stability under these circumstances. What it means is that it hadn't got any worse so far with the half-dose. It's hardly a ringing endorsement.
His point was this. Given that the count didn't change for the second consecutive test, when weighed against the obvious physical decline in other ways, the immediate risk to the kidneys was less than the immediate risk from tumour growth. In other words, although it is still a dangerously high reading, we are tackling the greater of the two evils. That is, the spread of the tumour is the greater risk, against the very serious risk to the kidney.
We now have to think constantly in terms of the greatest risk and trying to counter that. And that could change overnight.
Increasing the Avastin dose to full strength may be a very short-term strategy, given the recent kidney pains and the knowledge that anything could happen. We hope for the best immediate outcome but we really have no way to know what will happen.
We are acutely aware that swelling in the brain indicates an active tumour. Potentially tumour growth and swelling are both revealing themselves in the marked physical deterioration in the last few weeks while on half doses. Some things cannot be reversed by mind over matter. The half doses so far may well have let the tiger out of its cage and may not be checked by a full dose.
We're also very conscious that the increase in Avastin next time around may again increase the protein output of the kidneys. I think it's almost certain. We know that organs other than the kidneys are also being affected the longer I am on it, and we have some evidence of this. So having the full dose of Avastin is actually a huge risk, but so too is not having it.
It is almost a "damned if we do and damned if we don't" scenario. So we don't feel inclined to celebrate whichever strategy seems the best one to take this particular week.
I don't know if you've ever played Blackjack, or what we called in friendly games 'Pontoon' or 'Twenty-one'. A friend of mine, now undergoing chemotherapy, got it right in this mini-exchange:
Me: It's exchanging one set of life threatening dangers for the other. It was a little in favour of the kidneys when the Avastin was reduced to half. Now it's marginally in favour of putting the risk back to the kidneys and tackling the tumour. Does that make sense? The experiment may show after the event that it would have been better to leave things as they are. But I tend favour action.
FRIEND: Yes that makes sense. Sit on 18 or draw another card, perhaps?
ME: Exactly. Drawing the card and hoping for a 3. Or even a 2. We've done a bit of counting of the cards flipped....
"So," I said to Tracey, "leaving every consideration aside that we've talked about, what do you think you might have done?"
"I think I would have chosen the Avastin increase. It could change tomorrow but today, the tumour is the greater risk. For you, you could have said, 'Let's give it one more try on the half-dose, test that, and make a decision based on three tests at that strength.' But that would mean it would be nearly six weeks away from resuming full-strength Avastin if all was going OK, and I believe we'd have no chance of restraining the tumour with any possibility of the quality of life you've got now, declining as it is."
She didn't say it because she thought it was what I wanted to hear. It's not like that with us. She knew, as I do, that we had no real choice but to flip the card.
You are both so very brave. To say that I salute you both almost sounds like an insult, but I do.ReplyDelete
Thanks, Roger. I appreciate the sentiment – but as I've said many times before, when people have life threatening diseases, all they can do is go for what they believe is the best possible alternative. Rather like being at the front in a war, the alternative to going over the top is getting shot for cowardice.Delete
Yeah, flip that card. I reckon I would have too.ReplyDelete
Of course we are also flipping the bird at Brian :)
That's the strategy, Dee!Delete
Talk about a rock and a hard place. Your life has narrowed down to a juggling of diminishing options.ReplyDelete
Tracey's right of course. Nobody but you can understand your physical and mental condition, and only you can keep making day-to-day decisions in the absence of any relevant medical guidelines. To rely on your intuition and personal feelings is probably as good as it is going to get.
It's a bummer, mate, but it looks as though you are just going to have to keep flying by the seat of your pants. (Pun not intended).
For many people,Denis,this has been a long and incredible journey of yours,and we all hope it is going continue for as long as you and Tracey continue to enjoy some quality of life.
Very best wishes.
It was always going to be that, Bob. [Options juggling.] Whatever guidelines are there, in the end it comes down to a personal decision when they really are options. As long as I can make it for myself I'll be happy not to lay it on anyone else. The trick may be knowing or accepting when I'm not clear enough in judgment to make rational decisions.Delete
We'll see what the days to come bring. We've learnt not to take much for granted. Thanks for your enduring support. The one thing we are able to take for granted is the unstinting loyalty of family and friends.
So when will the full avastin dose happen? Did you have a half dose last week -sorry, I have lost track a little since I was away.ReplyDelete
It's all...hard, this pointy end of Brian. One blessing, if we can call it that under the circumstances, is the blog. As far as I'm concerned, anyway.
Julie M XXX
Monday, 4 Feb. That's Monday week. Yes, I has a half-dose last week. Strong seizure one day after, plenty of red spots on arms but they seem to be settling. It'll be interesting to see how many come out after full Avastin dose. More importantly, to see how I feel.Delete
I think I need to give blog-entry a rest – the main pages I mean. I suspect people are getting dw-blog overload, but it's become a compulsion for me. Narcissism therapy?
How long are you there in Melbourne? I should be emailing. Email block is a strange thing. I think I understand why I'm suffering it.
At this point, the best situation is one in which you are the most comfortable -- the one that enables you to keep on writing, to have meaningful relationships with friends and family, to get decent sleep so you are as bright as possible, and to be pain free without mind-destroying pain killers.ReplyDelete
The mind, while it cannot restore your brain, still has considerable power to make positive choices within a very narrow and diminishing range of options. You can also make very negative choices, which I know you will not do, but it does demonstrate that you still have some control over your situation, although not as we all would wish.
What a journey you are on, Denis. One taken by everyone but without the profound depths, twists, and opportunities for observation, recording, communication, and creative discovery that you have experienced.
You say you are torturing loved ones, but in the end, having known you will have been a great gift to everyone involved, especially those closest to you. It might not feel like it at times, but lives are much richer for having shared this with you.
Well put and thanks, Joan. You are quite right about positive options. Being negative is a descending spiral, which is why, after building up and up as days go by without seizures and I have one that leaves the bits all broken, there's nothing for it but to try to pick up the pieces and start again with the glue. [Dangerous mix of metaphors brewing here. Oops – there goes another one.]Delete
I was reading an article earlier this evening by a psychologist who was saying that we sometimes forget the unconscious, or subconscious part of the mind that works together with the conscious to create the operating mindset. I don't think that is unfamiliar to any of us who've been steeped in eastern philosophies, but sometimes it needs to be spelt out in the west in a different way for the western mind. I've not finished the article yet but that's what I get from it so far.
We're all on our own journeys, but if the blog creates a record of it as I perceive it, and as it's been affected by the actions and insights of others, it's all to the good if someone gets something from it. It may be that the further I go the more confused and irrational it gets, but that's the track I'm on.
I know in my heart that I'm not doing the torturing, but even when I'm conscious that it's what's happening to me that creates this pain for others, it is still hard to take. The most upsetting thing of all.
Thank you, Denis. I was hoping I hadn't been telling you how to suck eggs, as they say. When my mother died suddenly and unexpectedly of a heart attack, we were all in a state of shock. No one would have wished that on anyone. After she was buried, I had a dream that the coffin was dumped in our backyard. My subconscious was telling me it wasn't over yet for me, and indeed, I spent the next several months dealing with my bereft alcholic father and my own grief, despair, and loss of independence, as I moved in with him for a time and came dangerously close to that fate that awaits many single women with ageing parents.ReplyDelete
It wasn't fun, but after the crisis and two years of subsequent recurring illnesses on my part passed, I emerged from the cocoon a grown up human being, not the inexperienced, self-absorbed 30 year old adolescent I had been.
Shortly before my mother's death, a superb Tarot reader told me that I was soon to go through a very difficult time. I groaned and rolled my eyes. She replied that she'd recently read for a woman who'd never had anything bad happen to her. The woman was as a result a shallow person.
This is the gift I refer to. Your experience is creating pain for others. It can't be helped. But such pain is not useless, unnecessary, or wasted.
I'd be intersted in that article on the role of the subconscious. I'm also beginning to understand Pandora's box. In the end, what is left when everything else has fled is hope. Keep pushing the cougar uphill, back into its cage.
I have a glimmer about the choice you have made between your brain and your kidneys.
I do not want to sound trite but the distress that comes from your situation illustrates the old adage that pain and love are inextricably entwined. The love of others, the love of life, the love of independence, the love of sharing etc cause more pain in the possibility of their loss because of their strength and beauty. It is faintly mirrored for us in following your journey, for the delights and admiration in reading your wonderful blogs and in admiring your attitude to the difficulties that face you make us all more conscious of the pain and the dilemmas that confront you. Good luck and we love to read if you feel like writing. Anne PReplyDelete
How wonderful if we lived in a world where there was no old age, sickness, and death (not necessarily in that order). A paradise, a Garden of Eden. But alas, we do not and have to make the best of what comes our way.Delete
Anne, trite is something you definitely are not. If you love something or someone, pain is definitely in the cards for you. We forget this and when the day comes when the pain arrives, we are shocked, surprised that it could happen to us.
I remember a scene from a movie I saw some years ago. An older woman has recently lost her husband. She's of course distraught and seeks the comfort of another woman, a "wise" woman of her culture. The "wise" woman says, "Why are you surprised? Did you think this day would not come?"
Not much comfort, but I guess the message is the one all the great traditions try to teach us.
A friend of mine bought me a Shambala Sun calendar for Christmas. January 2013 says "If we can let go for just a moment, relax, and fall into the center of now, we can encounter directly the freedom that we've all been seeking." This might be totally out of context here, but for some reason, reading that this morning as I sat down to my computer made me think of you, Denis. It's so Dao, isn't it.
Thanks, Anne. I appreciate your kind words. Buddhist philosophy says that the pain part of most things, love included, comes from clinging to them as if we can't accept that they change, and they do, as we do, from moment to moment. We are trying to wrap up our parcels of water. The moment we stop trying to do that we get a little more sensible and more prepared to face how things are, and make our decisions accordingly. You will have seen that in your lifetime of experience, which is more than mine.Delete
And that takes us out of Joan's Garden of Eden and makes us face 'the day which is to come', with just the right amount of acceptance, we hope, because history shows pretty clearly that no-one avoids it. If we've had the good things of life, we can hardly complain. Of course I would like to be able to continue even at the level of [dis]comfort I am at now, because I want to see Tracey's face every morning, and my family's and friends' faces when it's the right time – but it's no good for anyone to think it won't change.
There's a great deal of comfort in accepting that. I don't want anyone to try clinging to what's not there, as if we can stop it changing. Just what is here now is enough when you've had a decent run.
So it's about what's on the Shambala calendar and yes, the Dao.
(I love what you have said here, Anne - and reminded me of this old soldier...)Delete
On Joy and Sorrow by Kahlil Gibran
"Your joy is your sorrow unmasked.
And the selfsame well from which your laughter rises was oftentimes filled with your tears.
And how else can it be?
The deeper that sorrow carves into your being, the more joy you can contain.
Is not the cup that holds your wine the very cup that was burned in the potter's oven?
And is not the lute that soothes your spirit, the very wood that was hollowed with knives?
When you are joyous, look deep into your heart and you shall find it is only that which has given you sorrow that is giving you joy.
When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.
Some of you say, "Joy is greater than sorrow," and others say, "Nay, sorrow is the greater."
But I say unto you, they are inseparable.
Together they come, and when one sits, alone with you at your board, remember that the other is asleep upon your bed.
Verily you are suspended like scales between your sorrow and your joy.
Only when you are empty are you at standstill and balanced.
When the treasure-keeper lifts you to weigh his gold and his silver, needs must your joy or your sorrow rise or fall."
Wonderfully intriguing, Ros. I have to take it in, but if it had been composed by Laozi the unity split into yin and yang would have come out the same. I suspect the essential message of the Abrahamic texts is not so different.Delete
There is a broader umbrella across all religious/philosophical thought. This poem reflects it perfectly. I've written about it many times on this blog.
Thank you for including it here.
Choices are more difficult with a brain tumour than with other forms of cancer, I think. With many cancers you might reach the stage as others have done where you just don't want any more treatment and choose to bow out as gracefully as possible. With a brain tumour, however (see Denis, I didn't put "however" at the beginning of the sentence!)the ramifications of reducing or stopping treatment must be more serious. Not just in terms of suffering but in terms of remaining you. Kidneys, presumably, can be dialysed (is that a word?)or in some way managed to prevent complete renal collapse. So that's why I think if I was in your position I would have taken the full dose of Avastin. It really is a case of going for broke for you right now and at least you still have the option of exercising some sort of control - unenviable though having to make such decisions seems to the rest of us! Your life has narrowed down to such sad and difficult choices and it's just bloody impossible for any of us to really understand what this is like for you - and for Tracey. All we can do is continue to read your posts and hope for the least unpleasant outcomes from each decision.ReplyDelete