Sunday, December 31, 2006

The bonfire of my vanity.

I've been sick.

From something other than cancer that is... to be honest, it felt good being feverish and blowing my nose and coughing and knowing that I didn't have to worry about any of it being melanoma related.

Of course, being a mommy, I found myself out at WalMart the other day anyway with my daughter Isobel, who needed winter boots, she'd seen some she liked there and they had her size and I know enough to get them when I see them, because her size seems to just go very quickly and then you can't find anything.

I was feeling crappy and got ready real quick. It wasn't until we were in the store and I was looking at fat sweaters (nothing fits anymore because of the steroid weight gain) that I caught sight of myself in a mirror and realised what I looked like. I looked like I got dressed in the dark. I was wearing black slip on sneaker/mules (feet have been swollen), navy blue socks poking out from under faded black yoga pants, a red sweater that was too big while I was pregnant and is now tight-ish and an olive green ballcap.

I'm sorry, but when you're the worst looking person in Walmart, you know you're in trouble.

I was a bit mortified to be honest. Especially given my hair loss and the fact that I used to be very pretty and am just this swollen, fat moon-faced freak right now.

I decided then and there that I was NOT going to buy any fat sweaters, I was going to hold out for the time when I get off of these damn drugs and lose this weight and start feeling like me again and wear my own clothes. Buying those sweaters felt like giving in.

So Izzy and I went to Tim Hortons after for a drink and a muffin. I guess I keep forgetting what I look like because inside I'm still the same no bullshit person I always was. They were pretty busy and I had two clerks waiting on me, trying to rush me, so I told them "I know you're in a hurry, but I won't be rushed", in my usual nice but don't mess with me tone. They sort of looked at me and I could tell they were thinking you frigging freak, look at you.

Whatever. I'm tired now and you are becoming tiresome, I thought, shut up and give me my freaking coffee and donuts, I smiled as I walked away.

We sat down to eat and it was one of those Chinese take out experiences all over again. I handled it better this time though, my vanity has truly been burned to the ground and good thing too. It was slowing me down, worrying about what people think was pointless.

And most people seem to get it, most people are nice. As I struggled through the Christmas shopping, I met so many kind people. People who stopped me in stores to talk to Jamie (because he's too cute!) and wish me a merry Christmas and didn't look at me like I was a freak. I think that day was just one of those 'everyone's totally miserable after Christmas and determined to behave like ignorant asses' days.

My hard thing has been losing my hair. Out of everything (and I know this sounds soooo stupid and vain) it's been the most difficult thing personally for me to deal with. I always thought I'd be able to just handle it, I'd just buzz cut it if I ever faced losing it. I was wrong. I got the clippers out one day and just couldn't do it. You know what it feels like? (not to sound dramatic) It feels like victimisation.

Getting cancer can happen to anyone, I don't feel victimised by that and I really do want to fight back hard no matter about how I look, or my hair, or how tired I get, or how crappy I feel, or anything.

But losing my hair made me feel like a victim. Try as I might and no matter how strong I've been or will have to be, I just can't shake that feeling. I guess it's better than being depressed because I have cancer and being unable to handle that part though, because I can at least look myself in the eye and say "it's only hair idiot, get over it", I'm not sure you can say that about stage IV cancer.

Freud would probably have something to say about that! Heh!

So that night I was feeling pretty bad about myself and everything. I really let myself get down - almost to feeling sorry for myself, which is unacceptable and weak and I won't have any part of it. Yes, you can feel bad about things, it's allowed, but self pity is just too... negative. I have this feeling that going there, it would be extremely difficult to come back from in one piece, you know?

I spoke to Jim about how I was feeling, which of course, broke his heart, which is hard for me because sometimes I need to say the dark stuff out loud, but can't abide hurting anyone by saying it. So I hugged him and just got over it. His and the children's happiness is so much more important than my pissy rant-y had a bad day because of how I look crap.

God, I sound pathetic!

But you know me... I'm putting it all out there dark stuff and all. No pretending, just the reality, which sometimes sucks because that's what reality does and it doesn't just do it for me because I'm not special. We all have our crap to deal with and it's all relative to our lives at that point, there is no "my crap is worse than yours so shut up" issue here...

A positive note from that evening though... I was rubbing my head, massaging the scalp in between the ten hairs per square inch I now have on my head and I felt STUBBLE!! I called Jim in and he felt it too and saw it! Little blonde hairs sticking up like when you haven't shaved your legs for a couple of weeks or something.

I was elated and I guess I'm pretty lucky when you think about women who have chemo for months and months and their hair won't come back until it's over. As soon as rads were finished mine obviously started growing in. As soon as it's long enough and not so thin looking I'm going to bite the bullet and cut it real short.

A small, petty thing, but it made such a difference. We went out for breakfast and a drive yesterday for our 'anniversary' and somehow people's looks just didn't matter. Although there was one woman parked in a gas station who STARED at me for about five minutes with her mouth open because I was sitting in the truck without my hat. I just sat and looked at her until she realised, then smiled at her. She didn't smile back, just pulled away looking embarrassed. I felt a bit sorry for her.

Anyway, my waist length red hair was my vanity, it's not coming back, let's face it. It took years to grow that long and was a bit of a pain in the arse the take care of to be honest. Maybe I'll come back as a blonde if these little stubbly hairs are any indication... a redhead in a blonde body... sounds interesting!

One thing I wish I'd done before while I was still pretty was when Jim told me I was beautiful, instead of saying "no I'm not", I wish I'd have just said "thank you sweetie". He still tells me the same thing all the time and he means it, he sees beauty in my strength, in ME (and thinking on it, he always has, I was just dumb). I guess - no, I'm POSITIVE - that's even better than having a pretty face.

I'd like you all at this point to join me by the bonfire and dance around it as my vanity burns away to ashes. Then we can grill hot dogs on the cinders and celebrate the fact that, even though this totally sucks, I'm still standing and standing beside me are people who are true Angels!

I think I just let go of a lot more than my hair in writing this.

So, how was everyone's Christmas?

We had a great time. Made lots of memories, took lots of video and pictures, it was pretty special and the kids got everything they wanted and more, which we haven't been able to do for a couple of years recently. They never complain, they're so great, but last Christmas was very much bare bones and this past year has just been crap for them. It was nice to just spoil them this year and watch them smile and be happy and forget about me being sick and everything.

What I wanted to do this year was give everyone something I thought they would be able to treasure forever, even when I'm gone. It was a difficult thing to do, very emotional, but I wanted something special, wrapped in boxes that they could keep the item in forever, accompanied by cards saying how much I love them. More than once I stood in the middle of a store and cried my heart out trying to choose cards for them.

Jim's was the hardest. I kept having to leave where I was at because I couldn't stop crying. It took days and finally I just bit that bullet and went for it. I stood in Hallmark sobbing like a baby reading the cards. Goodness knows what people thought. Probably that my marriage was in trouble or something...

This is what it said, I don't think he'll mind me sharing.

My Love,

There are times when I wish that we could lengthen the days and shut out all the busy, hurried moments of our lives so we could have more time together.

But you know, maybe counting the minutes we spend together is not the most important thing.

What is more important is that we have a love that's strong... A love that goes beyond the limits of time.

And I just want to tell you, especially at Christmas, how much I Love You and how much I love the way you share your time and your life with me.

See, for us, it really is all about time...

I gave my daughters gold heart shaped lockets with the words 'I Love You' engraved on the front and I gave David a silver ring. Little Jamie I chose books for; Guess How Much I Love You and I Love You Little One. I wrote notes inside them both for him to read when he's older. I hope they help him realise just how much I really DO love him. I intend to read them to him every day too, so they are completely familiar to him.

I gave those gifts out before we opened any other presents, the moment was pretty emotional for everyone, but then as I'd planned, it was soon lost in the pleasure of giving and recieving their own gifts.

All in all we had an amazing day. If that's it for me, if I never see another Christmas, this one was perfect!

Happy New Year, everyone!

Wishing us all, Health, Happiness and Hope!

Saturday, December 23, 2006

Time to play The Game!!!


It's all about the game and how you play it.
All about control and if you can take it.
All about your debt and if you can pay it.
It's all about pain and who's gonna make it.

I was mooching about the other night and ended up catching the end of the WWE Monday Night Raw. It was utter crap, of course, but Triple H was on and it reminded me of watching Wrestlemania 21 a couple of years back. The only good thing about the show was that Motorhead performed The Game (Triple H's [then] theme song) live. It was worth sitting through the whole show for that.

Anyway... back in my right mind... (yeah, right)

I'm sleeping again. I can't get enough sleep. It's confusing. I sort of wish my body would make up it's mind... errr... my mind... errr..... well, you know what I mean.

I'd sort of like something in between 'roid rage and catatonia, thanks. Any sort of level ground would feel so wonderful right about now. But maybe this is just how it's going to be. Maybe playing on an uneven playing field is part of my life that I'm going to have to stay used to and expecting things to level out anf give me a break is unrealistic and...weakening.

The older subcutaneous tumor on my butt has got bigger, it looks a bit like a boil, but I'm not even fooling myself that it's not mel. The one I found the other day is elusive, it peeks out through the layers of dimples (thanks decadron!) ocasionally. I have now found another on the back of my left thigh... these things aren't shy about coming forward either. You feel a lump then *BAM* (bit of Emeril there), all of a sudden there's a freaking great tumor sitting there.

This is going to sound strange, but to be honest, I don't really worry too much about sub-q's. I figure that as long as they're coming out in my skin, they're not in another organ. They can be resected, cherry picked, I don't consider them life threatenting. In the time between April and October, aside from the MOALT which didn't want to stop, the only progression I had was a few sub-q's and they seemed to arrest themselves with Temodar. The original ones are the same as they always were. It's only with the brain metastasis and the steroids that these new ones have shown up for the party.

That's not to say that sub-q's aren't something to worry about, of course they are. And when you find a new one, it's pretty terrifying, because it means that yes, mel is still lurking and it gives you this sense that it's totally random, which it is. And it can move so horribly fast. But in my situation, after the initial "OMG" moment, when I remember what I really AM facing, they just seem a bit...I dunno... redundant. Does that make any sense? They're not going to kill me, that job has yet to be decided on between the brain and the liver.


I'll get scans next week and get back in The Game, I guess.

I'm taking my kids out today so that they can buy gifts for Jim and feeling so lucky that I can do so. I was laying in bed thinking about my first week or two of treatment back in Oct/Nov. I was just in bed and going for radiation, taking chemo and thinking that this was it for me. This was going to be the rest of my life. And I was happy with that, because I was glad to be alive. But now I get to do everything a regular mommy does again and I don't ever want to let that go.

I also plan on taking some of that wonder drug, I mentioned in an earlier posting to spike peoples coffee with... Should be fun!

I think I can do it, I'll use the kids as a diversion.

Anyway, having said all of the above, if someone were to offer to take the kids shopping today, I'd be much obliged. Just kidding, the stores are going to be busy, but all the aggressive, frantic people out there have got nothing on a woman with (hopefully rapidly shrinking) brain tumors and 'roid rage. Plus I won't have Jamie, so that'll free me up a bit.

I found this poem and thought I'd add it here.


Standing for what you believe in
regardless of the odds against you
and the pressure that tears at your resistance
means courage

Keeping a smile on your face
when inside you feel like dying
for the sake of supporting others
means strength

Doing more than is expected
to make anothers life more bearable
without uttering a single complaint
means compassion

Helping a friend in need
no matter the time or effort
to the best of your ability
means loyalty

Giving more than you have
and expecting nothing
but nothing in return
means selflessness

Holding your head high
and being the best you know you can be
when life seems to fall apart at your feet
facing each difficulty with confidence
that time will bring you better tomorrows
and never giving up
means confidence

By Anon

There is always hope! Gotta keep on fighting, both physically and emotionally, as Sir Winston Churchill said; If you're going through Hell, keep going!

One thing I wanted to say was thank you to everyone who's been responding to this blog and to those who e-mail me about it... I guess I just never knew there were people like you out there. You guys have no idea the tears I shed at the things you say, it's like having this loving family who I never even met.

Thanks for being here.

Okay, off out to the shops - wish me (or them) luck!

Friday, December 15, 2006

That's MRS Doofus to you!

So, remember the time in the Chinese take-out place when I was feeling like people were staring at me because I'm a moon-faced hairless freak?

Jim and I went out on Saturday to take care of some stuff and have our anniversary breakfast/lunch. I noticed that people were staring at him and giving him odd looks (more so than usual). He noticed it too and we wondered why... then I looked at him and realised that he was wearing a black ballcap, complete with an embroidered image of a rifle on the front. They probably thought he was a mass murderer or something, rather than a supporter of the Bill of Rights.

Because that's how people get, I guess. Either that or they were thinking of asking him what his screen name is...

ANYway... that night in the CTOP (Chinese Take Out Place), I'd borrowed his Arfcom hat... I think that's what generated the attention. Maybe. Or maybe it was being a zitty, moonfaced hairless freak sporting a ballcap with *gasp* a firearm on it that did it.

Anyway, in the spirit of honesty, I wanted to post that. Doofus? Moi?? Mai, oui.

So Tuesday was my last day of treatment. I'm pretty glad that's over, it was do-able, but the logistics were challenging. I'm doing okay, pretty tired, a bit headachey, nothing major at this point and certainly able to function normally. Keeping my eye on these headaches because I don't want to land up in the ER again. Half a Lortab seems to put the pain away nicely...

I have done no Christmas shopping. None. It's going to be an interesting weekend... The most I've done is put up some lights, no tree yet either. I need to get my butt in gear. Jim's had the flu/headcold thing all week, so there was no way I was asking him to bring me in the truck to get the tree. Poor guy's working in a cold building feeling like crap all day, he deserves to come home and rest.

This is a funny Christmas for me... On the one hand, I want to make is so special, and on the other hand, I have practically zero interest in the accompanying rat race that people put themselves through. If I didn't have kids, I don't think I'd bother too much this year... a little bah humbug I know, but it's been a heck of a year. I'd rather go on a cruise and be waited on hand and foot. Nowhere warm, maybe one of those Alaska cruises.

You ever feel like just being a bit selfish?

I know I can't, not ever, but sometimes I'd just love something good, and for it to be about me, rather than it being about everyone else. Because apparently (new realisation as I'm writing), I'm still feeling guilty about having cancer and breaking everyone's hearts and I think I'm trying to overcompensate for it. As if anything could ever compensate for facing the thought of losing your mother or your spouse...

I so sound like I need a break, huh? It's all good. I'm not special, we all need a break, all of us melanoma warriors and caregivers.

I do know how important these memories are going to be to my children though, so I'm determined to do the rat race if I have to. If this is the last one I get with them, they deserve to have it be special, they deserve the memories. If it isn't my last Christmas (and who knows? I'm not special, like I said, there's no reason why I can't keep on keepin' on here), maybe we'll go away next year and get waited on hand and foot!

Call me a whaaaambulance if you must, but I feel the need to be pampered.

The holidays kind of snuck up on me this year... actually since I've been living in the USA, this has been happening a lot. I think Thanksgiving throws me off a little. When I lived in the UK, I'd have all my shopping done by the end of November...

Doesn't look like a white Christmas here this year either. Buffalo is having unseasonably warm weather, which is great for the heating bills, but sad for the Christmas lights. Oh well... no icy roads to traverse to get to Toyr'R'Us, no slippery parking lots to stagger through... maybe that's why my Christmas spirit isn't in full flow... no snowy-snow!

I found a new subcutaneous tumor on my butt this morning, same cheek as the other one, same side as my LND. I was laying in bed and went to pull my nightie down and brushed it with the back of my fingers. It came up fast, it's at about 1cm, I think... Scares the crap out of me as to what else has grown inside me that I don't know about yet, but am still reluctant to go through any more tests/procedures right at this point. It'll all still be there the week after next.

So there's me for today... Take the funny and laugh at it and ignore my whining. I know that I'm trying to.

Just... answer me one thing if you can, before you go...

Through all of this, I've been so focused on my family, and wanting to survive for them, and everything they're going through and I'm so determined to stay strong, because that's the message I want to send to my children, a gift that I know I can give them which will last forever. But... last night, at 2:30am, as I was waiting for the Ambien to kick in (for my 2 hours sleep, heh), I suddenly thought, what about me? This is my life... What about me? I mean, I know... I KNOW it's not about me. I know that.

But is it selfish of me to feel that for a moment, sometimes, even in the privacy of my own mind?

Ah, screw it. I'm not doing this. It's just those damn demons trying to get in the side door using my insomnia as a crutch. Best get my guns back up.

Thanks for listening anyway.

Please come now I think Im falling
Im holding on to all I think is safe
It seems I found the road to nowhere
And Im trying to escape
I yelled back when I heard thunder
But Im down to one last breath
And with it let me say,
Let me say...

Hold me now
I'm six feet from the edge and I'm thinking
Maybe six feet
Ain't so far down...

I'd far prefer to put the demons down there though!

Sunday, December 10, 2006

What do I care 'bout that winter storm?

I've got my love to keep me warm!

Probably the last time I was truly, joyfully happy was December 23rd 2004. Sitting in my hospital bed, burping my newborn baby, watching some dumb morning TV show, where Barry Manilow was singing that song. I was SO happy. I felt like nothing could ever hurt me again. Nothing could take away the perfection of that moment.

That evening I was told that I had cancer.

Since then, there has been happiness, but it has always been tempered with the thought of cancer. True, unadulterated JOY is gone forever.

I mean, I'm happy now... living life one day at a time, taking every moment as it comes and trying to make it special. I'm not unhappy... but my life is different now. I see everything in a completely different way. Some of it hurts like Hell and some of it is in a better way, if that makes sense. It's like cancer gives you a different outlook on life, situations, relationships... pretty much everything.

There's a lot to be said for making every second count even if you don't have cancer.

If you've been reading this blog for a while, you might remember where I was speaking of cancer being a bit like grief. You go through the same sort of stages as you navigate your way through the situation.

I think where I am now is acceptance. When I was in the hospital, I pretty much accepted that I probably wasn't going to survive this latest setback. I let go completely. I think that did me good, because as I began radiation therapy and started to feel better, I just allowed that for myself.

It was a hard place to get to, but it's so much easier once you're there. I'm not saying that I accept this is going to kill me right now, or anything. And I'm certainly not giving up the fight. Just that I accept that this is how it is, there's not much I can do other than what I'm doing and I can't waste my time fighting demons I can't see. That's what cancer feels like sometimes, a demon hovering in your peripheral vision, just visible enough so that you can never really forget, or not for long anyway.

That's where having enormous balls comes into play. You have to look the bugger straight in the eye and tell him, "Screw You!". You might have my body (for now) but you can't EVER have ME. I don't know about you, but I'd rather have eyes on the asshole than keep him in the periphery where his only purpose is to screw with my life, my happiness, insidiously, sneakily.

I've always been a bring it on kind of a girl.

Cancer knows that I know it'll kill me eventually, I look it in the eye everyday and acknowledge that, then I tell it, "But not today..."

Not today.

Tuesday, December 05, 2006

Life in the slow lane.

You should have seen me driving to radiation this morning. It was 17 degrees(f) outside, with just a few inches of snow on the ground. Nothing for Buffalo, really. And the plows had been out all night, so the roads were pretty much clear, for the most part. But me... to call it a white knuckle drive would be an understatement.

I don't know why I was so nervous, probably something to do with how people drive on the thruway here. I take the 990 to the 290 (that's what we call the roads here in Buffalo, just by their numbers, apparently people joke about us for it). It's not as bad as the 33, but it can get a bit hairy at times. Add in that it's pitch black at 630am when I leave, bad weather and brain tumors and you see my point.

Anyway, I nailed it. No worries.

So how is SRS?

In some ways it's more tiring, but that could be the cumulative effects of having so much radiation already. I get a bit of a headache in the treatment areas, but not bad enough for meds. My right hand was a bit shaky recently, but that's stopped now, which I'm hoping is a sign of good things happening.

I'm seriously thinking about giving myself a break after this treatment is done. I have to have scans...well... now (I cannot put myself through full scans with contrast at this point, I just can't face that). And then what? Good news? Bad news? More treatment? I sort of feel like taking a couple of weeks off and just enjoying what might be my last Christmas with my husband and children. If the scans are bad news then I'll deal with it in January when life just sucks anyway. Or maybe there will be good news... but you sort of can't allow yourself to expect it. Prepare for the worst and anything better will be easier to deal with.

I dunno, we'll see. I just really want a break. I'm torn. Dramatic, huh?

Anyway, it's one of those bright, sunny days and the snow is so pretty. I discovered something new too... when Jamie goes down for his afternoon nap, I always used to take a nap too. But what I discovered that makes me feel so much better in so many ways is to take the portable baby monitor and go for a walk out back in the woods.

I've been having problems with my legs, which the doctor feels is a result of the steroids, and the exercise really helps, my balance is much better now and the shakiness is less than it was. It got so that I couldn't carry Jamie up the stairs... Out of all this, I think the steroids are having the worst effect on me of all. I'm pretty worried about how they're affecting my immune function. The subcutaneous tumor on my butt has grown quite a bit. Scares me to think what else might be growing, I'm not ashamed to admit that.

ACK! What if? What if? What if? I am so bored of having cancer. I sound like a bloody broken record!

I'll see. I'll speak to the doctor this week and get his input, but I really want a break.


But maybe that's not realistic.