Actually, the correct term to use is NED (No Evidence of Disease) – cancer survivors tend to steer away from that other C-word. But imagine my surprise, after spending almost two hours with Ricardo yesterday morning, with him very patiently explaining everything about my case, to find out that I’ve been NED since the biopsy reports came back last October, which was then reconfirmed by the third operation. This is the short version of el caso az …
- primary stage IV colon tumour and surrounding lymph nodes removed
- two secondary tumours found in liver
- two months of chemo
- liver resection aborted after discovery of peritoneal lesions
- all biopsy results negative
- PET scan shows liver metastasis eliminated after chemo
- third operation to “clean up” liver and peritoneum
- peritoneal lesions turn out to be benign scar tissue
- all biopsy results negative
- “wait & watch” – testing every 3 months
- high probability of recurrence
It ain’t perfect, especially that last bit,
but at least for now I feel like I have my life back …
So, no more chemo. At least not until I get the results of my next CT scan, which will be on January 29th. If something shows up on the scan then I’ll be back on the surgery/chemo rollercoaster. If not, I think I will probably take Ricardo’s advice to “wait and watch”, unless some further evidence presents itself in the next two weeks. And I guess that’s the way my life is going to be from now on, always hoping that the next round of tests (every 3 months for the next two years, then every 6 months) won’t show any signs of recurrence.
If the biopsy results had come back positive during the last operation then chemo would have been recommended. And so, the reason for not doing more chemo is simply because there is no evidence of disease. And, according to Ricardo, there is no scientific evidence that backs up doing “just in case” chemo to help prevent recurrence when someone has been NED for as long as I have been.
Meanwhile, there is a very high chance of recurrence in the next two years. So much so that Ricardo says I should expect that it will happen again, but I should also know that when it happens it will be treatable, especially because of my “extraordinary” response to chemotherapy. And so it’s “wait and watch” and get on with my life.
I still don’t know how to feel about this. On the one hand I am very relieved not to have to go through any more chemo right now – I can’t tell you how much I was dreading it. And I am really looking forward to living a normalish life again, not as someone constantly recovering from operations or being sick on chemo. But knowing that it’s probably not over yet leaves me feeling somewhat subdued, though I don’t want the fear of it happening again to overshadow the healthy days I have ahead. As much as I can I want to just focus on the present and live each “three month installment” to the fullest.
So now I am especially glad that I started back to yoga classes, and next week I even have a couple of English classes lined up. It’s going to take awhile to sort out the work thing since Nog now has some of my students and others I’ve contacted may or may not be coming back in February. I’ll also be working on the ideas that Lizzie sent me about turning the tapas blog and my natural clothing store into money making ventures. I actually quite fancy the idea of having more than one iron in the fire in terms of work. And I need to get some money coming in so I can get myself over to Greece this June …
What a ride it’s been, eh guys? I honestly don’t know how I would have got through all of this without you, so thank you all once again for your constant support. And although it’s not over yet at least it should be less of a rollercoaster, with only possibly scary bits every three months or so. Fingers crossed for the 29th!
Fingers, toes and everything else crossed. Meanwhile, get to work and save up for Greece.
Yay! NED :)) Woooohoooooooooo! Go Az and your extraordinary chemo response – your body’s immune system rocks! 🙂
So happy for you and I think the ‘enjoying life now’ is the best possible plan, even without the possibility of a recurrence. We could ALL do with a little more carping of the diem I suspect.
Whew. I’ll bet it’s nice to get off the rollercoaster for a while.
Dang, girl, that is such great news! And to not have that dreaded chemo looming up…. We’ll just have to keep sending that white light along your way so that the quarterly tests will always be negative.
Fabulous news! I’m so thrilled. That is really amazing.
That would be really great to turn the tapas blog into a paying venture.
Wandering Coyote said:
Woo-hoo, Az! I can’t tell you how happy I am for you!
Extremely good news. I’m so glad to hear it, and I am proud and happy to actually know in person someone who has gone through this sort of disease and come out the other side (mostly) whole. I know too many people who become hopeless and terrified if they hear “cancer”; they immediatley assume they are going to die. Now I can reassure them and say, “Not always. I know someone who fought and won.”
Bravo! And keep up the good work.
What a great immune system! I hereby resolve to be more grateful and attentive to mine.
“What a great immune system!”
The thing is, other than a bit of extra broccoli and green tea in my diet, I really haven’t done much in the way of “healthy lifestyle” stuff. But suddenly I feel inspired to make a lot more changes and get as fit as I can. And that’s something that having more chemo would have prevented. I’ve never felt so sick in my life as when I was on that stuff.
My friend Becky, who has had breast cancer twice and who says cancer runs in her family, told me about one of her sisters who was convinced that she was going to die when she found out she had cancer … and she did. Becky is convinced that her attitude played a big part in this outcome. So, while I’ve often been terrified, I just could never imagine myself dead (that sounds weird, but you know what I mean?) and I don’t know if that form of “denial” has helped or if it’s just all down to “azar”. Whatever works, that’s what I say.
But I don’t really feel like this is some sort of personal victory, just that I’ve been very fortunate (for now) and I want to focus on the things I feel are good for me.
I think I still feel a little unsure about not doing more chemo, just because I had this idea that it would “take care of” any random cancer cells that might be floating around in my system. But apparently everyone has random cancer cells and Ricardo said it just isn’t logical to give chemo to someone who is presently healthy.
I’m still doing some research on this, but I’ve known Ricardo for years – and he’s been the head of nuclear medicine for many years – and he not only gave me advice based on his experience but also based on what he would do if he were in my situation. He also told me which oncologist he would see if he had cancer and he is going to set me up with this person so that I never have to go back to that other group (yay!).
Anyhow, speaking of healthy living, must get up now and get to yoga class. Brrrrr …
amazing recovery. perhaps you’d better go light some incense down at the cathedral 🙂
It is good news, even coming with a “but” attached. For the moment, healthy living looks like the way to go, and three-monthly testing should be able to pick up any nasties before they get very far.
As you say, time to get your life back.
ian in hamburg said:
Great news, az!
This is wonderful news 😀
Big Bad Johnny P said:
That really is fantastic!
I know this is easy to say, but knowing that it may/probably/might come back shouldn’t be too damning. Which one of can be certain that there isn’t something inside us right now which just hasn’t shown symptoms yet?
Try not to be afraid of it and just keep doing all the positive things you are thinking and talking about doing.
At leasdt each three month period will then be filled with good quality time and experiences. You already come across as a strong person (never mind how you actually are) 😉 and being tested makes us stronger!
Dan | thesamovar said:
az, that’s the most fantastic news!
Fab, fab news. I’m sure your attitude has helped keep those nasty cells at bay.
And the best thing of all might be getting the name of a decent oncologist so’s you never need to go through the needless kind of pain you went through last year.
Now get to that yoga class!
Linda aka Beatrice said:
I’m grinning from ear to ear 🙂
The power of PMA (positive mental attitude) is not to be sneezed at! (How are those stiches healing btw?)
I agree with Becky. Attitude has a great deal to do with the outcome of a prognosis. Our minds have a funny way of lining up our health with our our “picture” of how we are in the world. You couldn’t see yourself as dead. While that is not the complete story, it is an important facet of the plot.
My personal mantra is “Cancer is not my path.” However, I don’t just chant that. I get regular screenings, I try to do the proper things to support my immune system in terms of exercise, I stay away from food additives, drink moderately, etc. But I do maintain the attitude too.
You have the best attitude I have seen in a very long time. Who was it that said “Damn the torpedoes! Full speed ahead!” That can’t be a bad attitude to deal with crisis diseases.
Whatever the reason, I am so pleased and happy for you.
archiearchive FCD said:
Whew! That is really good news. I shall have a green tea in celebration. 🙂
That news ROCKS, az! I’m so pleased for you!
I’ll be sending good vibes on the 29th, even so!
There is some confusion returning about this decision, after reading about other people’s post-op treatment on the Colon Club forum.
So far I have only come across one woman who not only became NED after only 6 rounds of chemo (I had 3) but she didn’t even do the follow-up surgery like I did. And she’s been NED since 1995.
Everyone else has had post-op chemo after surgery, even those whose biopsies came back negative, like mine.
My main worry is that just “waiting and watching” almost feels like inviting a recurrence to happen. I really want to believe what Ricardo said about there being no difference in the chance of recurrence whether I do chemo now or not, but the truth is that I still have doubts.
Maybe I should just do the oral chemo for awhile?
Ah well, I still have two weeks to make a final decision since I was told that in any case they want to do the CT scan with me “clean” and not full of chemo drugs.
Going to ride The Bike now…
Very good news az! Ignore the last line. The worst thing you can do is worry about it.
Hooray! Brilliant news, az, and the best start to the new year anyone could’ve hoped for!
That was written on the Colon Club forum yesterday, by someone I admire very much who has received some very bad news lately. And who is also fond of saying “hey, I’m not dead yet!”.
It’s taking me awhile to shift gears here and stop thinking of myself as a “sick person”. I mean okay, I’m still not fully recovered from the operation – heck, I was barely recovered from the second op when they did the third one. But yesterday I went to yoga class feeling much more like myself, much less vulnerable and tentative, and what a difference that made.
In fact, it’s making a difference all over the place. Today I’m doing some major reorganising of casa az that will allow me to work on my new projects better. It means turning the livingroom into a studio/workroom/classroom, but what the heck. I’ll show you how it looks tomorrow.
Okely Dokely, Ned! 🙂
Time to get all that video organised!! 😉
Timothy (TRiG) said:
Ah, a dose of good news for the day!
I say this is excellent. Now we focus prayers and hopes on no re-occurrence. You take care and enjoy!
Toy Box said:
Yay, good news! A nice way to start the year 🙂
A huge C*O*N*G*R*A*T*L*A*T*I*O*N*S Azahar!
I hope you have a whole new lease on life, and a lot of good things come your way real soon.
Can’t think of much else to say but
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