The Plan!
Let's have a moment of vain introspection here. What is my best feature? Is it my eyes? My lips? My hair? (Not at the moment.) How about my breasts? It's certainly not my stomach. (It's nice that I have such a healthy, over-inflated ego that I can actually list a number of possibilities to answer that question.)
It's actually my brain, I think. My brain is that glorious organ that lets me read, enjoy conversation and engage in (occasionally) witty repartee. It lets me write this ridiculous nonsense. It lets me have an ongoing dialogue with my conscience, whose name is Parenthesis (I've worked out that that's who I'm talking to every time I open a bracket). And, if you want to get really fernickity, it keeps me alive.
So, the plan is up! I saw the neurosurgeon on Wednesday, the radiation oncologist on Thursday and the stereotactical radiosurgeon on Friday (today). Now that is a cool title, and I'm going to use the words stereotactical radiosurgery A LOT. You have been warned.
The neurosurgeon says that we can do surgery if we need to, but to keep it as a last rather than a first resort. He said that I'm probably a candidate for stereotactical radiosurgery though. (Don't worry, I will explain what it means eventually. I just like to say the words lots.)
The radonc (radiation oncologist - in this case, the shorter version is cooler. Go figure.) said that while we can radiate the tumour exactly, we are better off also radiating the whole brain as well, to prevent growth of any new tumours.
The stereotactical radiosurgeon (actually, I think she's just a radonc who happens to work in stereotactical radiosurgery. I don't think they are really called stereotactical radiosurgeons. Although they should be.) said that if it's just an isolated tumour, then stereotactical radiosurgery is a good option for me.
So what is stereotactical radiosurgery? Read the link, this blog is only really for the interesting stuff. Basically, it's a one-day procedure. They will bolt a frame into my head (yes, that's the really yuck bit) and then take a bazillion scans, then map out the exact location of the tumour, target it, then shoot radiation precisely at it from all angles using advance computer somethingorother. And then take the frame off my head again. I will be completely fine again the next day. One day brain surgery. What's not to love?
A week or so later I will then start whole brain radiation, which to be honest is the one that scares me more. It will be a low dose of radiation to the whole brain over three weeks to prevent the recurrence of any more tumours. It will have the usual radiation side effects - fatigue, hair loss (after I've spent the past month growing it too - typical), redness, maybe some nausea. These will all go away after a month or two. There is also a risk of some long-term (and permanent) effects - about a 25% risk. This might mean that I would lose my ability to concentrate for large periods of time and also some short-term memory loss. Good thing I have my name tattooed on already, really. And I'm sure someone will remind me who Amy is.
Jess: This cereal is fantastic! What is it?
Mama: Apricot Fruity-Bix.
Jess: It's amazing! I'm going to remember this one!
(Next day.)
Jess: This cereal is fantastic! What is it?
Mama: (Sigh.) Apricot Fruity-Bix.
Jess: It's amazing! I'm going to remember this one!
Yes, I'm very nervous about the possibility of the permanent side effects. The certainty of the problems I would have if I didn't treat the tumour worry me more though.
I am feeling really positive about this. I think this will be good. Well, not good as in enjoyable, but good as in effective. I just have a good feeling about it, and I really like my new team (I'm now out at the Wesley for all of this).
I am going in for surgery on the 14th June. It was supposed to be the 7th, but I am going up to the Sunshine Coast for the long weekend with a big contingent of people and we are going to 'recreate Caloundra' (a trip from several years ago) and have an amazing weekend. We have rented a penthouse apartment with eight-person spa and rooftop terrace. There may or may not be some alcohol consumed. There will definitely be conversation, witty repartee and some great company. It will be good. So I put the desire to have fun over the desire to have tumour removed and delayed the surgery for a week. How much damage can one little lump do in a week? This is my post-chemo holiday and celebration. I'm going to have fun, dammit.
Anyway, I am feeeeeeeeling good. Loving my window time.
So that's the update, and that is the Plan, folks!
Thank you for the review on the Secret, Amanda!
Take care of yourselves...
God bless.
Much love,
Jess xoox
It's actually my brain, I think. My brain is that glorious organ that lets me read, enjoy conversation and engage in (occasionally) witty repartee. It lets me write this ridiculous nonsense. It lets me have an ongoing dialogue with my conscience, whose name is Parenthesis (I've worked out that that's who I'm talking to every time I open a bracket). And, if you want to get really fernickity, it keeps me alive.
So, the plan is up! I saw the neurosurgeon on Wednesday, the radiation oncologist on Thursday and the stereotactical radiosurgeon on Friday (today). Now that is a cool title, and I'm going to use the words stereotactical radiosurgery A LOT. You have been warned.
The neurosurgeon says that we can do surgery if we need to, but to keep it as a last rather than a first resort. He said that I'm probably a candidate for stereotactical radiosurgery though. (Don't worry, I will explain what it means eventually. I just like to say the words lots.)
The radonc (radiation oncologist - in this case, the shorter version is cooler. Go figure.) said that while we can radiate the tumour exactly, we are better off also radiating the whole brain as well, to prevent growth of any new tumours.
The stereotactical radiosurgeon (actually, I think she's just a radonc who happens to work in stereotactical radiosurgery. I don't think they are really called stereotactical radiosurgeons. Although they should be.) said that if it's just an isolated tumour, then stereotactical radiosurgery is a good option for me.
So what is stereotactical radiosurgery? Read the link, this blog is only really for the interesting stuff. Basically, it's a one-day procedure. They will bolt a frame into my head (yes, that's the really yuck bit) and then take a bazillion scans, then map out the exact location of the tumour, target it, then shoot radiation precisely at it from all angles using advance computer somethingorother. And then take the frame off my head again. I will be completely fine again the next day. One day brain surgery. What's not to love?
A week or so later I will then start whole brain radiation, which to be honest is the one that scares me more. It will be a low dose of radiation to the whole brain over three weeks to prevent the recurrence of any more tumours. It will have the usual radiation side effects - fatigue, hair loss (after I've spent the past month growing it too - typical), redness, maybe some nausea. These will all go away after a month or two. There is also a risk of some long-term (and permanent) effects - about a 25% risk. This might mean that I would lose my ability to concentrate for large periods of time and also some short-term memory loss. Good thing I have my name tattooed on already, really. And I'm sure someone will remind me who Amy is.
Jess: This cereal is fantastic! What is it?
Mama: Apricot Fruity-Bix.
Jess: It's amazing! I'm going to remember this one!
(Next day.)
Jess: This cereal is fantastic! What is it?
Mama: (Sigh.) Apricot Fruity-Bix.
Jess: It's amazing! I'm going to remember this one!
Yes, I'm very nervous about the possibility of the permanent side effects. The certainty of the problems I would have if I didn't treat the tumour worry me more though.
I am feeling really positive about this. I think this will be good. Well, not good as in enjoyable, but good as in effective. I just have a good feeling about it, and I really like my new team (I'm now out at the Wesley for all of this).
I am going in for surgery on the 14th June. It was supposed to be the 7th, but I am going up to the Sunshine Coast for the long weekend with a big contingent of people and we are going to 'recreate Caloundra' (a trip from several years ago) and have an amazing weekend. We have rented a penthouse apartment with eight-person spa and rooftop terrace. There may or may not be some alcohol consumed. There will definitely be conversation, witty repartee and some great company. It will be good. So I put the desire to have fun over the desire to have tumour removed and delayed the surgery for a week. How much damage can one little lump do in a week? This is my post-chemo holiday and celebration. I'm going to have fun, dammit.
Anyway, I am feeeeeeeeling good. Loving my window time.
So that's the update, and that is the Plan, folks!
Thank you for the review on the Secret, Amanda!
Take care of yourselves...
God bless.
Much love,
Jess xoox
posted by Jessie at 4:44 pm
5 Comments:
At first I thought you said stereotypical radiosurgery.
Not knowing you well enough to compare your brain to all the feaures you mentioned, but I would have to agree with your assessment of it as your best, or at least, it's up there in the top three.
I thought June 14 rung a bell. You'll remember your comment from the same day last year, yes, it's Marshall Ledbetter Day! Now if I can only figure out how to get 666 Dunkin Donuts delivered to you at the hospital....
Hi Jess!
Have just been catching up on all your news, as I havent been able to find the internet in the last couple of weeks. Definitely sounds like you deserve to let your hair down so-to-speak! Sunshine coast sounds great, guessing you will have a lot of fun!
Hope you are enjoying your window time. Heres hoping it becomes a permanent fixture for you very soon.
Thinking of you all the time Jess. Thoughts are with you all the way girl!
Cheers
Mark
Hey chickadee!
I figured by your lack of response to my sms "R u in Mackay yet?" meant either your phone was sulking again, or I should catch up on your blog. Glad now that I followed through with the second option - Mackay will still be here waiting for your return - hopefully in the not too distant future.
Salsa was delayed a few weeks - only just beginning tonight (Monday), shame we couldn't sign you up!
Lots of love to you as always,
Debbie and Troy xoxox
P.S. Still working on lining you up with '30yo bald-headed Pete' when you get back up here!
Hello Jess
I hope you have a beautiful long weekend in the Sunshine Coast. Make sure you take lots of pictures and have fun!!! You deserve it.
Take care and god bless...
Min Tze
Hi Jessie Joygirl - you would have to be one of the most amazing young women - no, actually people - it has ever been my privilege to connect with.
I hadn't read your blog for quite a while, so was bowled over by your latest news when you thought you were in the clear for some excellent window-time. If attitude has anything to do with how things work out, you will definitely be top of the class, my girlie.
Have an absolute blast on your weekend away - a wise choice, in my opinion. The Annandale mob will all be thinking of you next Thursday and including you in Caro's wonderful meditation.
Caro and I ran a retreat a couple of weeks ago and John and Jolieske both asked after you and sent their love. Hopefully we'll see you and Julie at the next one at the end of August.
Lots and lots and lots of love and hugs.
Jane xxx
PS did you get my book? Someone else's went missing in the post, so I'd just like to be sure you got yours.
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