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.

Saturday, November 25, 2006


Since my mad dash to the ER happened on our wedding anniversary, Jim and I decided that we would make every Saturday our anniversary for the rest of my life.

We're about to go out for breakfast (or maybe lunch as we're taking our own sweet time getting ready) and then we'll find something to mooch about with for a few hours. Sometimes we go to the river or the lake, but today I think we're going to stay close to home. We'll see. It doesn't matter where we go, every moment is so utterly special for us.

Something funny, I woke up at 3:30am and couldn't get back to sleep, so took an Ambien. It lasted for two hours. I was miffed, thinking I'd get a long sleep - went six and a half hours the night before on it. I just lay in bed and laughed to myself... sleep will come when it comes, obviously. It was a gorgeous sunrise though, sat with a latte (actually just remembered I have the machine as it was put away when we moved and forgotten), looked out the kitchen window and enjoyed feeling good before meds for a while.

The mean person mentioned in my previous post publicly apologised to me today. I spoke of the meaness, so thought it was only fair to speak of the apology too. To publicly apologise takes a certain amount of courage and I graciously accept the apology in the spirit with which it was intended.

"Heather I would like to apologize for my previous post. I guess I was having a bad day and took it out on you. My words were hurtful and for that I apologize. I stuck my nose in where it didn't belong. You are a strong person and I commend you in your fight. I wish you the best of luck in your battle."

Fair enough. I have no reason to believe it's not genuine, no matter who they might be.

Bit of a short, mellow post today, I woke up with this song running through my head and can't stop singing it. One, by U2.

Is it getting better?
Or do you feel the same?
Will it make it easier on you now?
You got someone to blame

You say
One love
One life
When it's one need
In the night
One love
We get to share it
Leaves you baby if you
Don't care for it

Did I disappoint you?
Or leave a bad taste in your mouth?
You act like you never had love
And you want me to go without

Well it's
Too late
To drag the past out into the light
We're one, but we're not the same
We get to
Carry each other
Carry each other

Have you come here for forgiveness?
Have you come to raise the dead?
Have you come here to play Jesus?
To the lepers in your head

Did I ask too much?
More than a lot.
You gave me nothing,
Now it's all I got
We're one
But we're not the same
Well we
Hurt each other
Then we do it again

You say
Love is a temple
Love a higher law
Love is a temple
Love the higher law
You ask me to enter
But then you make me crawl
And I can't be holding on
To what you got
When all you got is hurt

One love
One blood
One life
You got to do what you should

One life
With each other

One life
But we're not the same
We get to
Carry each other
Carry each other


I Love You!

Friday, November 24, 2006


Okay.... This turned out to be a long one, you might want to grab a latte and a slice of pumpkin pie and take a couple of Motrin (maybe a Valium) before you start reading. Oh, and I put in some pictures to break it up a bit. Oh, and you might not want to read the end part entitled The Ugly if you're easily offended. [/disclaimer]

Yesterday was Thanksgiving (master of the obvious, me, I know).

I found myself having a bit of a moment at one point.

I mean, I was totally on the ball and soooo organised. The dinner preparations went like butter, my girls helped me, we had a lot of fun. It was a labor of love, there was no work involved.

Jim and I had to run out early in the morning for something we'd forgotten the night before when we did the big grocery shop.


Short funny story while I think of it; I had earned a free turkey with my card from the local supermarket, so went to pick it up on Wednesday evening. Awesome you say, every little helps! That's what I thought, I was going to give it to the food bank, but realised that with the storm and then my issues, Jim had missed quite a bit of work and things got a bit tight there for a while, so I'd better keep it, because there's been times this past year where I've worried about having enough food for my own family, I'll be honest, and I can't be so arrogant that I don't expect those sort of times to come again.

Anyway, the turkey... Did I mention that it was frozen? Did I also mention that I knew it would be frozen?

I said to Jim, no way we're eating that turkey tomorrow.

We were like the Pilgrims!

In true Pilgrim mode, I decided to go forth and find a fresh turkey. I'd like to take this opportunity to thank my husband for his patience and sense of humor. I have no idea how he puts up with me.

We went to another local store, Wegmans. I used to work for them, in perishables, so I knew they'd have fresh turkeys right into Thanksgiving day. They had a couple of nice, large turkeys there on the shelf. "Kewl" I say, and then look at the price of the maybe 20lb one. $53! I stood there and laughed my butt off.

Jim was all for just buying one, but I told him I'd eat frozen pizza first and have the other turkey and our Thanksgiving on Sunday before I'd spend upwards of $50 on a turkey. I mean, sheesh, I'd go out back and shoot one before I'd do that - although who wants to spend the night before Thanksgiving plucking and disembowelling? UGH.

But I had a better idea...

"We're going to Walmart." I say the dreaded words to Jim. He pales slightly, but takes it like a man and off we go.

We have quite a nice supercenter here in town, btw.

It went like this; Parked car (need handicap sticker - keep forgetting about being terminally ill), walked into store, hit meat counter, find shipload of turkeys that they'd had the sense to defrost so that doofuses like moi can eat Thanksgiving dinner, look at price: $22. For an 18lb bird.

Plus all the cashiers had a great laugh at my doofus-ish-ness and the $53 turkey at the other place. Leave 'em laughing is my motto, it's a good feeling to make someone's day by just being normal and nice.

So anyway, back to our usual scheduled program.


So yeah, we had to go back to Wallyworld the next morning for a couple bits and pieces I want (did I mention that the shopping trip the night before took place at 11pm?). Not sure why we bought the new shower curtain liner and bathmat, but oh well. It was as we were driving home that I got to thinking about how lucky I am. I guess the spirit of the day, which we all know isn't about turkey, puts you in the mode to be thankful for what you have.

I got to thinking about people who are having it so much rougher than I am. Cancer patients in the middle of their Hellish fight. Children with cancer, who face it with far more dignity, strength and courage than I could ever hope for. People who may have recently lost a loved one, who are facing this first holiday without them. I know how the day made ME feel. I can't imagine how one could do it filled with grief.

Anyone who reads this who is living with that, please know that I thought about you yesterday and I cared. And I still do.

And then I got to thinking about people who, probably by no means, or fault, of their own, are just really down on their luck. Homeless people, of course, I see no reason in this day and age in the United States of America why a family should be homeless. For me, with a brutal Buffalo winter imminently upon us, I really think there's more that could be done. And I know about personal responsibility, I'm a great believer it, I believe you make your own luck and sometimes, when things go to crap, you just have to put on your big girl panties and deal with it. But not everyone has that ability. And sometimes, I believe people get to a certain point and it's just extremely hard to bring yourself back.

I say this, because this time last year, we lost everything. It was a culmination of things. I had the baby, couldn't work because of the surgeries (I was planning on finding a new job in the spring of '05 when I was well recovered from the baby and the WLE and SNB, but then found out that they'd found positive cells in my groin nodes and had to go for the LND), my LND recovery took so long, I had it at the beginning of May and it didn't heal well. I was still having problems right through to the Fall of that year. Jim's work became inconsistent, (he was laid off three days after my mel dx, right after the baby was born), he worked every hour he could, but you get behind and it's hard to get caught up again, heavy local taxes didn't help... taxes on everything - even your taxes, etc. It was hard on Jim and, he never made me feel this way and pooh-pooh'ed me for even thinking it, I know that had I been working, even part time, we'd probably have been able to pull through.

We moved into this house about a week before Thanksgiving and then the day before Thanksgiving, Jim was laid off from his job. It was a pretty stressful time, but we made it work, with a little determination, grit and backbone. (Things get bad, sure, but there's no reason you have to just lie down and die - OR lose your dignity. Sometimes you need extra tools, like outside help, which is what we got from Jim's union. You accept it graciously and with thanks, and then, when you can, you pay it forwards to the next person who needs it.) One year later, we're still standing and, aside from cancer, our life is pretty all right at this point. There has been enough work this year, so even though we're playing ketchup from last year (or trying to), we're lucky enough to be in the position to do so.

My dream? To recover from these setbacks I've had and feel well enough to go back to work in a little jobby-job.

That's my Thanksgiving/Christmas/Easter Bunny wish this year. I've been a really good girl, Santa.

So anyway...

I got to thinking about how lucky I am.

I live in a (not at all posh) really cool, very old house. I'm warm. I have enough to eat. My kids go to excellent schools. We're safe. Healthy (well, you know... my family is, which is such a blessing). My situation seems to be improving - I'll take that one day at a time, the good days are great, if we have more bad days, I'll worry about it if/when it happens. I also get to stay home with my baby every day, which is a pleasure, he's such a little man. I'm so happy to have this time with him. I'm happy to be home when my kids get off the bus too... it makes my day to see their smiling faces. It makes my day also to see the fear beginning to leave their eyes. I know that every day they ride home on the bus not knowing if something's happened to me, whether they'll come into me laying on the floor sick. Or dead.

Out of this whole cancer fiasco, the thought that I KNOW I'm breaking my children's hearts is the hardest thing to live with.

So... my moment...

I guess what I was trying to say with all that verbiage was that I thought about other people who have problems, not necessarily cancer, but there are other things just as, even more in fact, pressing. I felt humbled. It made me really look at my own situation and made me realise just how good I have it, how lucky I am - in spite of all this horrible crap - to be where I am now, with treatment seeming to work (and yeah, I know it can all turn to crap tomorrow, even more reason to be thankful for today and seize THIS moment).

I thought about the friends I've made, my Angels, as I always do. You guys, of course. People like Jim's foreman, who didn't care that he had to miss hours to take me for treatment and helped him to make them up at other times and took up a collection at the union hall for us to help us get through that really rough time.

His wife, who didn't know me from Adam and who drove an hour from her home twice a week, before she went to work, to take me for treatment so that we could continue to try to make ends meet and told me that she'll continue to do so, no matter how long it went on for. Who also told me never to be afraid to call and ask for anything, because if it was something she couldn't do, she'd just say so. I liked that honesty, makes you feel like less of a burden if someone just says 'I'm sorry I can't' rather than do it and be thinking that they don't want to. She's also the person who, the first time my doctor told me we were seeing improvement, held my hand all the way home as I sat and had a little meltdown.

Jim's union brothers who've really been there for us this past year in so many ways.

Parents at my daughter's school who called and offered help with the kids and shopping and babysitting Jamie if I have to have scans or treatment. We just started in this school system in September, I've never even met these people. My daughter's teacher, who gave me her cell# and told me to call any time and is offering her so much support at school, I'd never have expected it.

The cancer survivor who makes hats and leaves them at the oncology clinic for patients to take for free. That really got to me the first time I noticed it. It's so sweet, such a lovely way of showing support...

Then I had a really good cry.

It sort of doesn't matter about the people who dropped off the face of the Earth when I got cancer. Family, former friends and neighbours (who you spent years taking their kid in off the bus so they could work and not pay daycare). It just doesn't matter.

My own mother doesn't want to talk to me, she told me when I was stage III, alone at home with a tiny baby, recovering from surgery, that the reason she never calls (I called her, obviously) is because she can't deal with what's happening to me, she's recently found a new love and doesn't want her happiness threatened. Hurt like Hell, that but what are you gonna do? I can't MAKE her care. I can't make her be the mother I need her to be. I don't even resent her. It's just like I don't even have a mother anymore, she's just another one of those people. I have bigger fish to fry and don't even know why I spoke of it.

Actually I do... because this blog is going to be here even after I'm gone and I want it to be HONEST.

It occurs to me that the whole people part of this could have been a post on it's own. The title "The Good, The Bad, And The UGLY" would have been a fitting one.

So anyway, after my snotty, streaming faced, really freaking UGLY crying fit (Jim had to change his shirt from the snot), I started to think a bit. I thought back to last Saturday and the people and how I felt and realised that I do feel pretty vulnerable on my first day off of treatment, and that's probably - definitely - just down to sheer physical exhaustion and that it's okay.

It passes so quickly, within minutes and then I'm singing my silly standing song and doing a load of laundry and thank goodness I'm able to actually DO my laundry now, after everything. (It's those little things, guys. I don't want to climb Mount Everest, or swim the Atlantic Ocean, I'll just fold laundry and load the dishwasher now that I can remember how to.)

And through it all, my moment and my cry, that morning happy thing I do with my coffee and toasted roll at oh-dark-thirty was still there. Sometimes I guess we all need a little meltdown... a little crying jag to relieve the pressure. Crying doesn't always have to mean unhappy. Sometimes it's just a physical release.

Thanks Giving? There was plenty of that. We had a great day!

It was the best Thanksgiving dinner I have ever made.

BTW, those Pilgrims were kinda FIERCE, huh? No matter what anyone's opinion on them you have to admit, that's bravery right there. Going to a new world with nothing. I sort of know that feeling, I came to the USA with my children and what we could carry in 8 large suitcases and started over completely. Didn't rob the indigenous population though... But then, I came over to a fully furnished house, so there was no need... (Watched the Mayflower show on THC last night in between naps. Quick btw too, I'm originally from the UK, so this is history and holiday I never really knew about before I lived here, I knew the part of why they left, of course, but nothing about once they reached the new world.)

Speaking of the UGLY... (If you got this far, you might just want to stop reading now... Heh.)

One more thing I'd like to say in this (loooooong) missive. And I thought hard about whether to say anything at all. But in the spirit of honesty, and because I'm more than a little appalled, I'm going to go for it.

This week on a certain cancer board I frequent, I have seen some posts by certain people that seemed designed to bring stage IV cancer patients down in an attempt to cause them to second-guess themselves for the furtherment of certain individual agendas.

Appalling doesn't even begin to cover it.

I'm so freaking disgusted.

The sick thing is, it's all about religion. The most appalling posts were written by people who profess themselves to be Christians. There's something wrong with that.

One thing I want to get straight and anyone who's been reading for a while will have seen my stance on this before, but for the record. I don't care about anyone else's religion. I just don't care. If you truly believe, then good for you, I'm happy for you. I really am. I just don't really care.

Even if you're the type (and trust me, I know TRUE Christians who would be appalled by you as they are VERY good people) who can't cope with life and it's trials without the comfort of hiding behind the skirt of a faceless deity, while making obscenely hurtful remarks to dying people and behaving as you wish, because God will forgive you, because you BELIEVE. I don't care. About you OR what you believe. I just don't want to hear about it. That's not hard to grasp.

I used to believe. Unfortunately that was knocked out of me with every setback I have had. Every look of fear in my children's eyes. Every tear my husband has shed.

Cancer has challenged - no, shattered every belief I have ever had.

"Exactly how DO you get through each day, knowing you are gonna die, and probably sooner, rather than later?"

Was one of the questions.

My response: With the power of modern medecine and the force of my own WILL.

Both are far more realistic than waiting for God to save me. Medecine keeps me alive (for now) and my WILL gets me through every day, every new challenge, every setback.

Someone said that God 'saved' them from melanoma (stage II). No, he didn't. And, as I've said before, I don't appreciate people thinking they're 'saved' because God loves them, while there are beautiful, amazing, worthwhile people losing their battle - why? Because they're not good enough? They don't believe hard enough?

It's utter bullshit. Please, spare me.

Anyway, my comments on the subject earned me this highly intellectual gem...

"Heather I have read your posts on all 3 boards and it seems to me that you feel that the meaner and toughter you are then it might just scare away your cancer. It's the "can't touch me" attitude. Commonly used by patients with a serious illness in order to cope. But from the outside looking in it seems very harsh and brutal and you seem to enjoy the "shock factor."

As they say everyone has their own way of coping and this is yours. But it doesn't sound any less crazy than the Bible thumping Christians. Bu I am sure everyone is thinking "oh big bad Heather, cancer will never take her down." I hope they are right."


I know.... I know... this person just looks a little bit... threatened... by me. They obviously have their bullshit little internet persona (totally anonnymous, btw) and judge other people by their own standards (if you could call them that) as to the the fact that they cannot be/are not REAL, so how can anybody be? I thought that too. It's basic human nature that the weak have the tendency to become jealous of that which they see, yet know they will never be.

I just thought I'd put it out there for posterity - and to give the people who REALLY know who I am the opportunity to laugh at it.

Don't you just adore amateur psychologists?

It's not like I don't know I'm going to die. I don't expect to be saved, what will be will be, all I want is a bit more time with my children and that's all it's about. I DO love the "I hope they are right." part. That pretty much says to me "Fuck off and die."

Sorry, sweetheart, not today. (Ooooorrrrrr, in a moment of dark honesty... You first.)

Hey, "Integrity is telling myself the truth. And honesty is telling the truth to other people." I am SO going to rot in Hell. And, in the spirit of complete and utter total honesty, I have to say that at this point, I'd sell my soul to the other guy in order to see my kids grow up. In a heartbeat. But he's nowhere to be seen either...)

And, of course, the whole thing was obviously designed to cause me to second-guess myself. To shake my courage. Shatter my strength and call it into question just a little bit. Why someone would even try to do that to a stage IV cancer patient is beyond me (and bear in mind that the remarks of mine addressed in that post weren't even directed at that person, unless it's an alter-ego). It was such a cheap shot. What sort of person must they be?

Well... I already answered that. Weak.

Yes, luvvie. My WILL is what gets me through. (Didn't G. Gordon Liddy write a book entitled WILL?)

My will isn't some sort of bullshit internet tough guy/armchair commando act. People who don't know me have no way of knowing that, even before cancer, I'd been to Hell and back many times.

I was already a survivor.

I feel too, that, due to the usual bb relationship/knowing people stuff, I've probably pissed some people off. I can't do anything about that. My obligation is to myself and if I see something appalling, not saying anything because it might offend friends of the person I said it to seems far worse than speaking my mind. Other people are allowed to spew forth their bile, yet others cannot respond for fear of ruining their good name or offending the wrong people? I don't really see that. And causing offense to anyone but the person who deserved it was/is never my goal.

The moment we begin to fear the opinions of others and hesitate to tell the truth that is in us, and from motives of policy are silent when we should speak, the divine floods of light and life no longer flow into our souls.

Soooooo.... was that a rant, or was that a rant? Too much latte has so much to answer for!

Discuss or ignore, but there it is. The Ugly. Never thought I'd see it on a cancer board... I mean, yeah arguments are a part of life, but some things should be sacred and dying people is one of them.

Anyway, back to the GOOD, because the UGLY is just too freaking BORING. I wish the ugly people peace and happiness.

(BTW, Jim made me post this blog, because I was just going to delete it.)

So, dear friends...

I hope everyone had as wonderful a Thanksgiving as we did, and look forwards to telling you all Happy Thanksgiving next year!

Tuesday, November 21, 2006

I'm Still Standing!

On Saturday evening, I felt well enough to go grocery shopping. Afterwards, Jim and I walked across the plaza to get some takeout food. Chinese for the kids and I, Subway for him. I ordered the Chinese food and sat down with a cup of tea to wait, telling Jim to go ahead and get his sub. I was tired by that time and needed to just take a minute.

As I sat there, I realised that people were watching me. I mean REALLY watching me.

I've had stage IV cancer since April. But have never looked like there was much wrong with me to be honest. Now it's a different matter. I look like a cancer patient. I was wearing my ballcap over my extremely thinned out hair, but you could tell things weren't right. My poor swollen face and black eye circles, the steroid zits, the weight loss along with the huge steroid tummy. All of it unimportant to me because I'm doing what I have to do to survive.

But see, for the past three weeks, I've been living in a different world to the one I was used to, the one everyone else is used to. I'd forgotten how it can be out there. I sat and sipped my tea and just breathed it out, but the attention was making me feel claustrophobic, isolated. I realised that it was the first time I'd been anywhere alone, without Jim, since this latest setback. I also realised that the only way to get through was to behave as if I had a little dignity, because frankly nobody else seemed that way inclined and sometimes what you take away from an experience is all your own.

As I walked to the counter to get my order, people's heads turned and followed me, then did the same as I walked out of the door. I'm not sure it was meant unkindly even, just... I dunno... stupidly maybe? People just don't always think...

And maybe I'm was just feeling a little bit vulnerable right then, maybe I should have just stared back, or taken my hat off, or something. That actually sounds more like me, but I wasn't prepared for how it was, wasn't expecting the claustrophobia. It silenced my ballsiness, damped down my fire just a little. I didn't like that. I won't say that I felt sorry for myself, just a little... weakened for that one moment. And of course I was really tired, so that didn't help. Was probably a huge part of it actually.

I felt a bit like I was no longer a real person, just for that minute in time... It was a... moment. A small moment of clarity that I didn't have before. I never realised how much I hide behind Jim on the rare occasion I'm in public now.

I'm over it, I went home and served up the Chinese food for the kids and as I did so, I was singing "I'm Still Standing", because that's the REAL truth of who I am. I know it, the people who know me know it. The rude SUV drivers in the Chinese takeout place don't need to know it. It's none of their business.

More positively, the next morning I felt really well. I held back on my meds and was able to drive myself for radiation (Jim came with, just in case). Just to be able to drive my car was so amazing. Trivial, but amazing. On the way home, we stopped at Dunkin Donuts (nobody stared) and I ordered coffee and donuts to go. By myself. I wouldn't have been able to do that three weeks ago. I could barely hold a conversation back then. That whole morning was like a gift. Seriously. It felt awesome.

Better yet, I drove myself yesterday and today too... And even better was the news from my doctor that we have "continued objective and subjective improvement in the tumor fields with no edema or other adverse side effects and vastly improved cognitive abilities". My treatment seems to be working. He looked at me, grinned and said, 'we're looking good, we'll just carry on'.

So day 17 of WBR...

Don't you know I'm still standing better than I ever did

Looking like a true survivor, feeling like a little kid

I'm still standing after all this time

Picking up the pieces of my life without you on my mind

I'm Still Standing!

Friday, November 17, 2006

Living with Sasquatch...

That would be moi!

Okay, so my hair is probably not going to last the weekend. At this point, I'm changing my sweater a few times a day because I have so much hair all over me I look like a mammoth. It's really weird. The funniest part is that my eyebrows have grown back in to their fullest and the steriods have given me a bit of a mustache.

Needless to say, I look freaking hideous. Steriod zits, radiation burns, severely thinning hair and a big old hairy moon face, complete with designer black portmanteaux beneath the eyes - not to mention the steriod weight, 'is that twins?' I have to laugh... it's so not important. Just another part of it all. I had the thought to go to the salon tomorrow and have my brows and 'tache done, I might be bald as a billiard ball by Monday, but by God, I'll do it with impeccable eyebrows!

So my ballcap is my best friend right now. I tried a scarf today and looked retarded, it scared the baby too, bless him, then it fell off and wasn't really comfy anyway. Screw it, its my head, if people have a problem with my Grace Jones look, they can just deal with it.

I had to go to Rite Aid this evening to pick up my drugs, because they screwed it all up yesterday. Jim and I were in line and he mentioned something about my cancer, the lady behind us actually stepped back like she thought she was going to catch something. Pretty much all you're going to catch from me is a dose of sarcasm, but I didn't bother to tell her that.

It's strange, because when you're dealing with cancer, it becomes your normal and you tend to forget how scared people can be of the actual word alone. I can't say I blame them. It's a terrifying thing and nobody wants to think about it, deal with it. Not even us, although we have no choice in the matter.

To me, this really is normal now. You make your own normal when dealing with setbacks in life and cancer isn't any different. It sucks, and no, there is no 'reason' it happened to you, no 'higher calling', no 'lesson', no 'gift'.

The thing about it is what YOU do with it once you have it.

It's not up to any higher power, what matters is how YOU handle it, how YOU make it count in your life. Something good from everything, you know? This blows, but if it doesn't work out for me how we hope, I really hope that I can have made something about it count... That's important. At the end of the day, in my opinion, life really just boils down to the person you are. That's all we are left with when things get grim and it's what keeps us going through the rough times.

Whoo! Short blog today because I just took a Lortab (does it show? LOL).

Hair loss? Bleh. Screw you melanoma. Still can't beat me. I have radiation on Sunday because of the short week next week. I told them "good, maybe it'll confuse mel into dying faster".

For posterity

I should have posted this yesterday, but was too busy being able to BREATHE a little for the first time in.... well, forever.

My doctor says that we have managed to reduce down my tumor fields.

The radiation seems to be working.

I believe that we must celebrate with every piece of good news and this is very good news!

I said when this all started that my family has a lot to be thankful for this Thanksgiving.

Even more so now.

Just this glimmer of hope, REAL hope when I've been holding on so tight for so long to the fact that there is always hope is beyond description for me.

I can't say thank you enough to everyone for your support. I never knew there were people like you in the world. Every day I am still blessed with Angels.


Remember that.

Tuesday, November 14, 2006

In a word, flatulence.

I'm not kidding, I have taken to speaking out of my arse. (It strikes me as funny considering they're treating my head... some sort of redirect perhaps?)

It's not a big deal, nothing a few apple/cinnamon candles placed in discreet locations around the house can't dissipate. But damn, the indignity of it, it's sort of distracting halfway through a sentence when you're actually managing to say something that doesn't make you sound like the moron you have become, you get *that* feeling. Brain power fades, butt power kicks in and that's you for a while.

It started on Saturday, probably in direct response to my last blog which basically pooh-poohed the side effects of treatment. My body probably just thought, easy huh? I'll give you easy!

BUT (take this body, cancer and all), it could be worse... I could have that concrete gut thing from chemo. So hah. Can't beat me yet, cancer. Give up, go home, be the loser you are. I have half of Yankee Candles Inc. in my house and it smells great, thanks.

You may have taken my health (although aside from cancer I'm so disgustingly healthy it's not even funny), but my dignity - and my bowels - will remain forever mine (if only in my own imagination).

You know, sometimes I get to the point where I hate some of my blogs. I read them back and think I should delete them. But then I read the comments that people leave for me and the e-mail in my inbox and realise that, yeah, this might just be doing what I'd always hoped since starting it. It was always my intention to try and help people to get through, you know?

I mean, it's not like I think I have anything terribly profound to say, there are lots of great bloggers out there, better than me by far. But my philosophy has always been to try and keep it real. Honest. I just feel that seeing someone be totally honest about their experience and how they're feeling, even if you don't agree with them, can help you find your own honesty, which can only be healthy. There's nothing more real than having cancer.

I just want to say to everyone, please don't be afraid. It totally blows, of course it does, but you can do this. You really can.

Quick rant: A bit of a contention with cancer literature and how cancer patients are treated:

Sometimes it's just too much freaking pressure.

Lemme explain where this is coming from... (and it's probably just me right now with one of my little foibles as I try to figure this crap out, flying by the seat of my pants)

I have always been a great believer in attitude. But lately whenever I read a magazine article or book about cancer and they start in telling you that you *must keep a positive attitude* to survive, I just start to feel completely exhausted.

We're pressed to be proactive, stay positive, blah blah blah. Eat grapes and drink water, that'll cure your cancer. If you want to get better badly enough you can and will. Most oncologists would never take chemo if they got cancer (easy to say when it's not eating you alive, huh?) OR prescribe it for their families.

I started reading a magazine Jim had picked up for free at the rad/onc place last week and got a bit angry to be honest. Just leave me the hell alone. Please don't tell me at this point in my life that pretending to be happy will save me. Give me a little credit here. I used to be intelligent.

Maybe.... just maybe.... at this point I want to be able to just be sick and have my doctor take care of me.

Maybe I don't have the incessant energy for positive rhetoric that I used to.

Maybe all the ex-spurts should just think about writing books about how cancer REALLY is, or (better yet) just shut the hell up and watch the damn paint dry for a bit.

It doesn't help.

We don't need to be browbeaten by some second-rate author who *might* have had cancer, and has managed to sell a few books on That's not helping. Cancer literature has become huge business. But any idiot can write a book. If it's a subject that people want to know about, it'll sell. However, how do we judge the validity of what we're reading in these books?

Has anyone ever thought this? What makes these authors right? Or do we just take what we want from the subject matter and forget the rest?

OR are they just giving people what they want? The *secret* to surviving cancer... Do we feed this media frenzy of "it's all about having the right attitude"? We all want to survive and maybe it's all just a coping mechanism. I'm good at those myself, but mine come more from black humor and - sometimes - bitter cynicism. Whatever gets you through the day, right? Is it a feel-good thing though? The message written in the cancer-media? How real is it?

Witch doctor magic? Snake oil? Cancer is a gift.

Anyway, to my mind, REAL positivity is this: Refusing to feel sorry for yourself.

I won't pretend to be happy with my condition. That's so not going to happen. But I refuse to feel sorry for myself here. Bad as it is, there are others who have it harder and who are probably handling it far better.

I won't feel sorry for myself. Stuff happens. I'm not speshul (well not in THAT way).

Going through every day of your life dealing with treatment and drugs and all of this and still being able to acknowledge that you don't feel as bad as you should and that today is a good day is far more positive than trying to maintain the 'happy' that the experts would browbeat you into believing is a positive attitude in their dumbass little books and magazines.

So, that's what I think. Feel free to disagree.

And anyway, you know the most positive thing of all? That I was able to have this little rant! It's a poke in the eye to cancer that I am able to sit here and bad-mouth it (cancer is a skanky beotch), in my opinion.

And yes, I'm going to read this later and hate it too.

And I'll still be farting.

I'll try to keep this next part short because it's a little more serious. But I came to a bit of a realisation yesterday about my condition. I think there might be a hormonal aspect to what's happening to me.

My periods have been weird ever since being diagnosed as stage IV. I put it down to the chemo and just dealt with it. But yesterday I started thinking back over the past few months and realised that there might be more to it than that.

Back when I was having my liver radiation in Rochester, that last week of treatment I developed horrendous headaches and started vomiting. I probably wrote on here that I was either having side effects that I had so far avoided, or stomach flu. But this happened/started on the first day of my period.

Of course, the next weeks passed and I didn't feel great, which I expected because I was recovering from radiation to my gut. But the next period, first day I had morning headaches and vomiting. I was convinced that by then it was stomach flu, not really taking into consideration the fact that it had again happened with my period (or maybe just ignoring it).

I never really felt better after that. That was the period of time when I slipped very fast with my general cognitive abilities, personality changes, ability to function. I mean I went fast. To the point where I didn't know myself.

Now this last time, where I was having the seizures and taken to the hospital, it was the first day of my period. I woke up that morning with horrible vomiting and headache and I think I was thinking that maybe this is how I'm going to get at my time of the month since chemo. But the day went downhill fast. At that point in my life I was completely unable to help myself and I must have seemed somewhat normal in spite of everything because nobody seemed to notice that I was no longer there.

It's only now that I'm starting to really think on this and wonder if there's some sort of connection here.

My first visit with this new radiation oncologist was very enlightening. He showed me about a patient of his who 8 years ago had a huge gliboblastoma along with copius seeding of smaller tumors in her brain. He told me that my head looked like the images he showed me of hers, but that I had three (smaller) large tumors (ugh horrible grammar) and that statistics say a 3 month survival.

Then he told me that the lady in the article was still alive 8 years later after having the same treatment he's doing for me.

What interests me in this is that he told me she's been taking Tamoxifen (Tamoxifen is an antiestrogen. Antiestrogens bind to estrogen receptor site on cancer cells thus blocking estrogen from going into the cancer cell. This interferes with cell growth and eventually leads to cell death.) since. I never realised before that it's a treatment for brain tumors. Aparently, gliboblastoma is extremely resistent to treatment, followed closely (of course) by melanoma in which Tamoxifen has been shown to work too.

So last night I did some research and found some interesting articles about the use of Tamoxifen in brain tumor patients which showed a trend of prolonged survival in many. I'd post the links, but blogger is behaving like an arse today. I'll try to do so later.

I'm not a doctor or any sort of expert, although I do know my body. But what if I'm right about this hormonal thing with me? How can I not be? It seems so obvious now. I plan on speaking with the doctor about it on Thursday when I see him. It might not mean anything, but what if it does? What if there's a way to increase my chances of survival here? Also, this doctor is so on the ball that I'm sort of expecting him to mention Tamox at some point anyway, but want to let him know my thoughts on what's happening to my body. Good to be totally on the same page in my opinion.

At the very least this line of thought puts me in a better place than I was two weeks ago. We must take advantage of every opportunity to get on top of this... monster.

This is where I am now.

Any information/similar experiences, etc, with melanoma/hormone therapy, anyone who knows anything about this who can share or point me towards more information, it will be much appreciated.

Okay, that's about the linit of my intellect, back to the flatulence.

Friday, November 10, 2006

Finally arrived!!

I got my first spammer! I think that means I've finally arrived on the blogging scene.

I sort of like spammers, they're just dumb enough to make me feel real good about myself even with my impaired mental function. "Nice blog" this one said... Oh thanks, glad you think my brain tumors are nice... It begs the question, I have brain tumors, what's your excuse?


So... Whole Brain Radiation. Let's talk about that for a bit. Not the technical stuff, because I'm not lucid enough to do that right, but about what it's like.

I know about the possible side-effects. I know that it can lead to memory loss, cognitive issues, hearing problems etc and, well, death. But let's face it, what's the alternative? Don't treat my cancer and then what? Death is a pretty permanent side-effect in any form if you ask me. I'd rather have a chance.

Funnily enough, it's do-able (WBR, not death). I know how scary it sounds, but in retrospect, once again, not a really big deal. I hate to do that to you, sort of want to describe how horrendous it all is and everything. But looking at it, yeah, it's had it's infinitely horrible moments, yet I can't say I wish I wasn't doing this because it's too hard. If you want something badly enough, nothing's too hard.

I mean, my poor little lumpy, burning, sore head is telling it's own story. But is it worse than the itchy, burning chemo foot thing? Nope. My hair is on the fence right now, I'm losing a bit, but nothing major, just being really gentle with it and trying not to scratch. I find myself unable to make a big deal out of this. All you can really do is try to get comfy, put your big girl panties on and suck it up.

I'm having probably more GI issues with this treatment than my liver treatment, and part of that might be the drugs I'm on. I'm losing weight like crazy and simply can't get enough food down me. My doctor had warned me about mouth issues too, from the rads and the meds and yesterday it felt like my mouth was starting to bake a loaf of bread, so Jim got me some Biotene toothpaste and mouthwash last night. I used it one time and the symptoms eased beautifully. Just keeping up with that during the day. Once again; do-able.

I was going to splurge on some Nioxin for my hair, but to be honest, the doctor told me it might be gone in 6-8 days, so I figured that by the time I started using the product, it'd be defunct anyway. Since Jim cut that 10 inches off my hair though, it's so much more comfy and managable and not dropping as fast, day 9 today, so we will see. It's not really important, but has to be mentioned because hair loss is so much a part of being a cancer patient that I'm not going to ignore it. We all have our own methodology of how we deal with it I'm sure. Some people bite the bullet and shave it off, others, like me, hope for the best and nurse it along, I guess.

It's cancer. You do what you have to do to get through this day.

Tomorrow can take care of itself.

Let's face it, cancer is going to screw with your quality of life more than anything you've ever dealt with before. If it's not the stress and anxiety, it's the treatments and the side-effects and trying to find a way to make it all fit so that you can still be you.

By the way, I met more Angels today. People's kindness is astounding, overwhelming... Humbling.

Wednesday, November 08, 2006

Ah, insomnia, so we meet again.

You know how I always say that I know when I'm starting to feel better because I can no longer sleep? Well, it's back!

Oh insomnia, you had to just remove that small corner of comfort from my life that lies in me snuggling in on my left side against the pillows, clean Kleenex in my bottom hand under my chin, other hand relaxed and limp, legs bent, aching back finally relaxed and secure as I veer into blessed unconsciousness for an hour or two.

Today is day 3 of no-nap time. No afternoon nap, small(ish) evening nap, then awake all night, just laying there listening to Jim breathing and trying to control my medically-induced rumbling stomach. Chicken and dumplings sound soooo good at 1 am.

I became real nap-py before we found the tumors in my brain, in fact there were times when I couldn't stay conscious. Then when Jim got me to the hospital, they pulled me back from the edge with drugs that just threw me sideways. I sort of slept at the point, but it was more than sleep. I could hardly keep my eyes open. Forget TV, forget conversation, my eyes would close and I'd be hearing you, but unable to respond.

They finally sorted my drugs out over the past week and things have started to settle down a bit. The most positive news for me is that, after needing it constantly, I now only take half a Lortab in the morning before radiation to counteract any chance of pain from the treatment. Otherwise, the pain is gone (something I wasn't sure would happen ever again).

Decadron isn't easy to deal with and I have to take something else to stop it eating my stomach apparently. These drugs make me hungry, so I'm like a little piggy, eating away and, well before, sleeping away. Dilantin was making me drunk/loopy/sleepy for a while, but seems to be settling into my body in enough of a dose to keep me awake at night now. Finishing chemo was a blessing, that extra medication was not helping me feel refreshed and energised if you know what I mean. The Decadron helped me to keep eating through this cycle though, which made my life much easier. Usually with chemo, everything tastes funny, but this time everything tasted great, I honestly couldn't eat enough and pizza with sausage, pepperoni and mushrooms (2 slices) is the only breakfast for a Sunday morning while watching Coronation Street.

Hopefully the Temodar will have worked with the radiation to shrink/kill off those microscopic brain lesions allowing us to go in and work on the larger ones with SRS.

I'm writing about this because I want to get it out there just how hard it's been to survive this episode. I think I'm probably making it seem easier than it's really been anyway, but my main point is that on Saturday October 28th (our wedding anniversary), I almost died. I'm serious, it was close and I knew it was - and now, a little over a week later, I'm blogging away with a relatively clear mind. This time last week I could hardly see the computer screen and trying to read or type was so painful I couldn't stand it.

At this point, my thought-processes and decision-making are still somewhat compromised and who knows if they'll ever be back the way they were before. It just doesn't matter, as long as I'm here and able to love and live, I'll be happy to remain in the slow lane for a bit. I'm happy at this time to just enjoy the rainbow, the sun behind the clouds.

There is always hope. I was ready to die and they pulled me back - my husband pulled me back as I was telling him in the hospital "don't let go of me, don't let me die in here". He didn't let go, he got me home and has held onto me almost constantly since, during the harder times of treatment and drugs and nightmares, the times when I'm so drugged that I can feel myself falling and am so scared that I'll just stop breathing. Jim is my constant and I don't know how he does it. I can't imagine what he must be feeling and going through inside his own mind, because all of his love, attention and focus is directed at getting me through this and keeping our bills paid and our kids healthy and whole.

There are heroes in the world, you know. He is mine.

Cancer sucks, we all know that. But in so many ways, I couldn't be more fortunate. Thanksgiving is going to have new meaning for our family this year.

Thankyou everyone for your posts and comments, I can't tell you how much it means to me to read them, this, this ... LOVE is one thing that cancer can't steal from us.

It's really pretty powerless, is cancer.

Monday, November 06, 2006

There are Angels among us.

There really are. And they come from the strangest of places in the most unlikely of forms.

They don't always consist of the people who you'd imagined would be there for you at times like this. It seems to me that they are perfect strangers, who reach out and CARE for no other reason than that they want to.

I have met many such angels recently and I feel so incredibly fortunate.

It's been a bit up and down (understatement) recently. Having deteriorated pretty fast over the past few weeks, it was discovered that I now have mets to the brain, three larger ones and too many small ones to count. My radiation guy started me very aggressively on Temodar (a chemotherapy which has a known radiation response mechanism) and whole brain radiation to attempt to shrink these mets down. Needless to say that last week was... interesting... WBR is not the most refreshing of events, but then, this isn't Club Med and I'm not here to look good (especially not with this bikini line - did I just say that out loud?).

The good news is that I have every reason to believe that this treatment will work, why wouldn't it? Why? I didn't get cancer because I'm special and it's certainly not going to kill me first because I'm special. We all get the same chance of getting the breaks here, there is no bigger plan.

There is hope. Always.

Once we have better control of the brain, the rad/onc will do targeted SRS on the larger brain mets - but that's not all, he's speaking of tackling my liver again after it's all over, then having my sub-q's removed.

He wants remission. He said to me that with illness like this, in order to get better, you have to have good strong oil and good strong water and as far as he's concerned, I have good strong oil. He'll be the water. He sees no point in not being as aggressive as possible with this treatment, he wants remission and I'll take it if I can get it. If I got another year of life, no matter what I had to endure to keep it, I'd take it.

With cancer, you learn to stop living your life in the long spells and begin to learn how to just enjoy the small stuff. The NOW. It's the hardest lesson and one that I think is the most monumentally impossible to do without the benefit of lots and lots of time, and time is what we cancer patients just can't count on.

For the longest time, as you all know, my biggest fear has been leaving my kids. It still is, but something I have learned since this latest setback is that, it's not the letting go that hurts; it's the holding on too tight.

This is probably all over the place, the meds make it hard for me to see straight. I just wanted to say thank you to all my Angels, those who e-mailed me, posted to me here and on Arfcom and MPIP, who sent me thoughts and prayers and best wishes and love and light and interesting packages in the mail, and hope, and who help keep it impossible for me to give up. I don't know how I'll ever respond with what I'm really feeling for all of you, it is so utterly overwhelming.

I hope this will be enough.

Today is another day and for the record, I'm feeling pretty all right. Maybe the radiation is killing those tumors already and my brain is becoming clearer, there's no reason to suspect that it wouldn't. Day 5 today. 9 more sessions of WBR left.

By the way, they told me that my hair is going to be toast, so yesterday I had Jim cut about 10 inches off of it just so that it would feel more comfortable (it's so itchy). Thank God we're heading into hat weather, I'm scared to think what my poor little head will look like without all that curly hair, a taller version of Mini-me perhaps, but more evil...