Thursday, November 30, 2006

When you get to the end of your rope, tie a knot and hang on.

Okay, so I was thinking... This blog is published on a couple of other websites and some people who read it are probably wondering "what in tarnation has all of this twaddle got to do with melanoma?". Well, the name of this blog is Living With Melanoma, and we all know that there's far more to living with cancer than the medical stuff. There's the human aspect, which is just as - if not more so in some ways - important.

But to throw in a bit of medical stuff, I just did my last session of WBR this morning. Melanoma is very resistant to radiation, so I was given the maximum dose of radiation for WBR. I did 22 treatments. The next step is reduced field SRS to two smaller areas for seven days. I'm not sure what happened about number three, because nobody is telling me anything, it's all very low-key and I'm a bit of a mess about it all right now.

I sort of feel like I see a light at the end of the tunnel. I'm just hoping it's not a speeding freight train bearing down on me, you know?

WBR was getting pretty tiring. It's been a challenge getting myself to and from the appointments, I'll be honest with you, especially towards the end of the week, but it's still do-able.

And I'm still so totally happy to be able to get myself around, I thought that part of my life was over. I even held off on my drugs a while yesterday and took the baby out, we just mooched around a couple of stores, but it was such a pleasure. I don't care what I look like, I felt normal.

So, seven more days.

And then I get the rest of my body scanned for the doctors in Rochester and anyone else who's interested. I have no clue at this point what's going to happen. In an ideal world, the MOALT will be at least stable and nothing new will have shown up and I can have the smaller liver mets treated with Novalis in Rochester. Then thinking of a spleen resection and getting the subcutaneous tumors out too.

I'm also willing to listen to what this new radiation guys has to say - assuming that I'm still pretty much stable, he had mentioned that he wanted to take a look at my liver too. Thinking on it though, I sort of prefer Novalis for the one session only deal and no more having to go every day for what seems like forever to get treatment.

But we all know that we don't live in an ideal world - especially not with melanoma, so I'm mentally preparing myself for the worst. And of course, if the worst is what it is, then I'm pretty much screwed as far as IL-2 is concerned because of my brain, as I believe we have to wait and see if there's a response to the radiation before they'll allow me to do IL-2..

So the thoughts go round and round and round.... Blah. I'm sick of it. I want a vacation from all of this cancer stuff. I feel like a broken record.

I read a book a while ago called 50 Essential Things To Do: When the Doctor Says It's Cancer. In it, the author says something that really made me think: Stop "Awful-ising".

That's what I need to do. Right now. Stop Awful-ising.

Maybe it's tiredness from treatment, which gets more pronounced as you go along, I knew that from before. But this needs to stop. If my scans are bad, I'll deal with it once I know. Time is short, why waste it awful-ising when I have no clue that it's going to be bad? So... prepared for the worst and trying not to think about it I am. If the brain thing doesn't work, then at least I had this time, which has been amazing. BUT... I'm still more into that why wouldn't it work? mode....

Confession (and background to where a lot of what I'm saying today is coming from): I had a bit of a meltdown on the radiation table yesterday as they were taking films of my head. I was laying on the table and they kept coming in and measuring me and whispering 'that's not right' and leaving and taking more films. I was there for ages, like 30-40 minutes.

I just started crying like a baby because I thought something was really wrong. They were so kind to me when they realised how upset I was. But I still had another good cry when I got to my car... and, thinking on it, it's probably all part of that darn process I'm always talking about. Sometimes you just have to let go.

Fortunately, I had great support from the awesome folks at MPIP, which got me through. Support is everything. No man (or woman) is an island.

We've been having amazing warm weather here recently, which is about to end tomorrow with snowy snow. Yay! Of course, the neighbours have their Christmas lights up well beforehand, whereas we'll be out there doing it with frozen toes and fingers as usual. Sort of makes coming in for hot chocolate (or Irish coffee for Jim) even more special though!

I'm sort of dreading the driving in the snow, though, the 290 isn't any fun on the best of days!

The picture above was taken at Niagara Falls, on Goat Island. The trees were completely coated with ice, it was so pretty, Winter Wonderland doesn't even begin to describe it. I like the winter. I LOVE being more or less guaranteed a white Christmas every year. The lights just look so much prettier with the snow.

Today I woke up with Wild Horses by U2 going through my head, actually this part...

Who's gonna ride your wild horses?
Who's gonna drown in your blue sea?
Who's gonna taste your salt water kisses?
Who's gonna take the place of me?

So that's been echoing in my head since about 3am.

Sort of better than the letter I was mentally composing to my mother at 1:30am.... Haha.

And to finish, a favorite quote:

One hundred percent of the shots you don't take don't go in.


Anonymous Anonymous said...

Congrats on finishing the WBR. That was a lot of treatments and you did it!! Your strength shines through all the time!!

Your comments today reminded me of a saying I have hanging up (and that I have referred to often to stop the awfulizing in my head!).....

"Coping with real situations is much easier than trying to handle imaginary ones."

Wishing you the best always and a December filled with lots of happy times,
11/30 6pm

5:53 PM  
Blogger Carver said...

Dear Heather,

It never fails to amaze me how strong you are and I absolutely love the quote you titled this entry with. I am glad you are able to meltdown occasionaly because you wouldn't be human if you didn't. You have been through so much and you have done it and continue to do it with so much courage and humanity. I am so glad you have a good team of docs and that they are also compassionate. My thoughts are with you. Love, Carver

6:08 PM  
Anonymous Shelley said...

One of the main things I get from reading your blog is that if I ever get to where you are now, I know that I will think of you and not be so scared. Your way of sharing takes that away.

Your meltdown I think, was so normal.

Your honesty in sharing the good the bad and the ugly of this disease, then taking all of it and making it seem less awful somehow..... It's pretty unique, Heather.

Congratulations on finishing the WBR, you did it with such courage, it is truly inspirational.

In admiration,


9:32 AM  
Anonymous Anonymous said...

"Stop awfulizing."

I like that. It's a bit like "refusing to feel sorry for yourself", as you said in a previous post. I like your attitude a lot.

Congratulations on getting through WBR, and driving yourself to therapy no less. That's courage right there.

Great blog! From start to finish absolutely worth the read. Put it in a manuscript and it would be published, of that I'm certain.

Thank you for sharing your journey, it's an amazing one and you're doing it with honesty, courage and grace. Your husband and children are very lucky to have the gift of you in their lives.

THAT is a legacy which will live on forever.


9:57 AM  
Anonymous Anonymous said...

WBR is over, time to celebrate just a bit? That must feel good. And to know you only have a few more days of SRS must feel pretty good too. Not to be premature, but you made it. I'm hoping that this treatment pacified those brain mets into complete submission and that the WBR will prevent anything new from cropping up like it's supposed to.

I hope you get to give yourself a break over the Holidays before you go in for your scans and have to deal with whatever you have to deal with, which I am hoping is NOTHING new. And I hope that the therapy you had on your liver has shrunk the MOALT down enough for surgery at least, better still that it it will be dead and disappearing fast.

As to your meltdown I have no idea how you never had one before that point. Strong lady, you're an inspiration and a pleasure to read.


9:08 AM  
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