Living with Melanoma

A Leap Of Faith

2007-01-19T08:55:00.000-05:00

It's yours, take it. Leap like a lunatic over the chasm below. Your true self awaits you, NOW you will know.

I had a follow up-follow up appointment with my radiation oncologist on Tuesday morning to get the results of my CT scan from the week before, because he wanted to adjust my steroids if there was no bleeding in the brain.

His nurse was even friendlier than usual towards me when I got there, which, having been here in this place of scanxiety before, made me wonder if they had bad news for me.

The doctor came in seeming very excited and chipper and asked how I was feeling. I told him about the rib pain I'm having - probably from coughing (cold came back), and all the vomiting from before didn't help I'm sure. He decided to send me for a bone scan just to make sure there's nothing nasty lurking.

Then he wheeled his stool over next to Jim and said, "I have the scan results from last week", he opened my file to the page and started showing Jim the results. I was a bit numb, because that's how mel gets you, you condition yourself to expect the worst. What the doctor was saying wasn't really sinking in with me even though I could hear the words.

Here it is:

As of November 1st 2006, I was told that I had three lesions in my brain, a 3.3cm, a 2.9cm and a 1.8cm, as well as vastly disseminate seeding of tiny lesions throughout my brain too small to measure.

That's when they gave me the three month prognosis.

As of the scan I had last week, the 3.3cm lesion has shrunk to 1.6cm, the 2.9cm one to 1.2cm and the 1.8cm one has shrunk down to being so small they can't measure it. Most of the seeding of tiny lesions throughout my brain is no longer visible.

So those 22 days of WBR and further 8 days of reduced field therapy really paid off, even though it was hard at the time. While you're taking these treatments, it's a real leap of faith, if you like. Because you feel like hell and have no idea if it's even going to work, but you do it anyway.

A leap of faith. Like when I was a child standing at the edge of the swimming pool, with my dad in the water telling me to jump in and that he'd catch me. So I jumped, as high and hard as I could, because I was a daddy's girl. And in that moment, that few seconds of freefall before my body hit the water, I experienced that same feeling of placing myself totally in someone else's hands, not really knowing if they'd be able to stop me falling, from going under.

Just hoping.

Right at the start of this whole brain episode, I decided to put myself completely in this doctor's hands and not second-guess him, which is quite alien to my nature. But upon that first meeting with him, when I was so sick and my survival was so questionable, he was the one who gave me that hope.

Yes, he gave me a horrible prognosis. But then he started to tell me about what he thought he could do if we were aggressive enough. He told me about success stories he's had with patients in the past, he told me that he thought I had what it took to pull through this. Good strong oil and good strong water (that still makes me smile). He gave me that hope.

And I jumped. Like that skinny little redheaded girl by the pool, I jumped. And the fall was endless, and I had no idea if anyone would be there to catch me, but I held on tight anyway. I kept the faith, held onto the hope, even though the odds looked so hopeless just a couple of short months ago. The fall was infinite.

And then suddenly, this week, it was like hitting the water and feeling my dad's arms closing around me and hearing him laughing and saying, "Good girl!" And then lifting me onto his shoulders which always felt like the safest place in the world to me.

The Doctor must be used to giving this sort of news, he included me in the conversation, but addressed himself to Jim, I think he could see my numbness and I think it was probably a completely normal reaction on my part. As he was talking, he'd keep looking at me and all I could say was, "Okay... okay..." I simply didn't know what to do with the news, which is better than we could have hoped to hear so early after the therapy.

But there's more. Not content with just watching and waiting now, Dr Aggressive (as he shall now be known) is going to be performing Gamma Knife radiosurgery on the remaining two shrunken lesions (and he says, anything else he feels might need it), because melanoma is so resistent to radiation that he doesn't want to take any chances.

Me? I'm with him all the way. Jump off a cliff? Sure... be right there.

So I didn't really know what to do with myself after the appointment on Tuesday morning. I heard the news and understood it, but couldn't quite get my head around it. I don't think it really set in until that evening. I sat and looked at Jim (you should see him, this is the first time he hasn't looked exhausted and terrified since the end of October) and just smiled. Yeah. It's real. I can relax just a bit, loosen my grip, just a tad and bask in this moment of happiness for a while.

I'll be looking at my scan results next week and I know I'm not out of the woods yet, but the fact remains that had we not been able to control the brain, I'd be much, much deeper in the woods than I am right now.

Next week can take care of itself.

It's funny what family becomes when you have cancer. My dad died when I was a teenager and since my diagnosis, I think about him every day, all the time. I was pretty angry, I think, about how he died and that I never got a chance to see him one last time, to say goodbye. Now I sort of feel as though he's watching over me like a guardian angel or something. I know this is a little whimsical, but sometimes, when things are bad and it's 3am and I'm awake, but trying not to think, it's like I can feel his arms go around me, smell the scent of the soap he used, hear him chuckle as he ruffles my hair. It's just my imagination, I know, but it's so comforting. I like to think he's close by anyway.

It's my life and my cancer, I'm allowed to be a bit off the wall if I want. :)

On the other end of the spectrum, I haven't spoken to my mother since early December. I could be dead and she wouldn't know. I've given up on calling her. It was always me doing the calling, telling the updates and to be honest, the conversations were disappointing. She gives me nothing and I am past the point where I have anything for her. Speaking to her just leaves me feeling alone and resentful, I no longer wish to deal with that.

I've tried. Especially since the brain issues. Mainly because I didn't want her to see her only daughter die and regret not having had a better relationship. However it seems that she doesn't want a better relationship, so I have to let her go. She'll manage to lie to herself and convince herself that she was there for me and that I was the problem. It's how she operates. The only thing I ever learned from my mother was how NOT to be.

It hurts me so much though, that my children don't have the support of their grandmother as they travel this road with me. That part hurts more than the fact that she couldn't give a rat's arse about me.

I had a funny (not ha-ha either) conversation with my aunt a few weeks ago. She called up out of nowhere - I haven't spoken to her since I've had cancer. She wants to come and visit, but she has to wait and see when my mother can come. I told her why wait? She said that she doesn't want to interfere. Interfere in what? I told her that at the beginning of November I'd been given a three month prognosis, so she might not want to wait too long and there was no way my mother wanted to come and see me anyway.

Her response to the three month thing? "So when will that be?" Like she wanted the exact date.

I've never really known how to use the word nonplussed before that moment.

It's a good thing I have a sense of humor!

But anyway, things have been said about me back home, between these people who are supposed to love me. I tried to broach the subject a couple of times and my aunt just told me that she 'didn't want to get involved in all that'. Get involved in all what? The fact is, my mother has serious issues and has never forgiven me for taking my kids and moving to the USA.

Frankly, I'm done with the lot of them. They bring absolutely nothing to my life. I don't want them to invite themselves to my home for a mini-vacation (let's face it, they really only want to see my kids, my aunt whined on at length about how her life hasn't been the same since we left).

There's no love for me there. Sometimes you've just got to move on. And really, these people have too many issues of their own for me to really think they'd have any sort of positive effect on my kids. Best to just walk away. Once you have cancer, other losses become easier to deal with... this is what I must do.

Not sure where all that came from, I think it's just something else I wanted to write down for posterity. Now it's 'on paper' and out of my head. I have better things to worry about than those people, maybe this is me finally letting go for good, seeing it in writing makes it feel more real.

Enough. ENOUGH of the negative BS my family always brings with them.

This week... today and tomorrow on our 'anniversary'... we have so much to celebrate!!

I'm feeling pretty lucky right now, I have to tell you.

Once again, to all of you who write and otherwise support me, thank you. We're still standing, in fact this week, we're standing better than ever.

So I'm joining the ranks of the mall walkers...

2007-01-12T08:20:00.000-05:00

...Actually I'm not. I think I exist only to irritate them as they stride past me as I limp along on my lymphedema(ic?) leg pushing the stroller, waaay too close to my body space for my liking, well practically barging me out of the way, if you like.

I mean, yes, exercise is great, which is why Jamie and I plan to head off to the mall a couple of times a week for a slow crawl around, I need it for my bones as the 'roids lay waste to them (plus I could use trying to get rid of some of this extra 'roid weight). But why do you have to be mean about it? You should see it. These people take it very, very seriously. C'mon people, it's the crappy little local mall, you're taking a walk, not training for the London Marathon!

Still it gives me some amusement, so I shouldn't complain. It's an aggressive sport people! NOT for the fainthearted.

So we started our 'walks' on Monday. I honestly thought it would start making me feel better. I should have known better.

We got home around 11am and I fed Jamie, took my meds and fed myself. Then I spent the rest of the day vomiting.

I have to be honest here, I've been feeling sick for about a month, I guess. I touched on it in my last entry, but it had at that time got to the point where I couldn't take any more. I'd have "good" days and the 'roids caused me to push myself further than I should have. But the swelling just continued to increase and lasted for so long that I thought it was just a permanent side-effect of the drugs.

After my CT scan, the swelling was even worse and I got diarreah that went on for days. I sort of expect that after all the contrast and the enema, so just lived with it. But by Monday, I was so sick that I wasn't able to keep my meds down and that's getting dangerous.

I began to have seizure activity along with the vomiting, just like before when my brain lesions were found. I was so scared. Jim came home from work, took one look at me and called one of the doctors who told him to get me to the ER asap. So off we went.

They did a brain CT, hydrated me, gave me IV Zofran and Decadron (the 'roid) and did bloodwork. I have some sort of gastric infection, which is what was making me swell, causing the diarreah, etc. My Dilantin (the med that controls seizures) levels were very low, hence the siezure activity. So they had me take a double dose that night to be on the safe side.

I had the headache from Hell the next morning, probably from cutting down on the 'roids so drastically because I was too sick to take them. I also had my check up with the doctor scheduled, so Jim took the day off from work and we went to that. He was pretty concerned that the ER hadn't done the CT with contrast, so sent me for another one with contrast (yay) as he was concerned about bleeding in my brain. His nurse said he'd call if there was anything to worry about and I haven't heard, so no news is good news.

Speaking of scans, this is what they did to me last week.

The pictures don't really show the damage as it really is, it looks much worse, but just an idea.

Ho-hum.

So... There we have the latest episode in the saga which shall now be called As The Stomach Churns... Don't touch that dial!

Nothing much else happening aside from vomit, seizures and plenty of naps. I don't think the mall walking will be taking place for a while (probably just as well, I don't think I'm up to contact sports, heh).

Once again I want to thank you all for your comments and e-mails, I don't know how I ever got to 'meet' such amazing people, but there you are! And you put me to shame with your writing skills! Thank you so much for your support and for taking the time to put your feelings into words. It means so much to me...

I'll work on a better entry when I'm feeling a bit better, thanks for sticking with me, guys!

"Is This It?"

2007-01-05T08:39:00.000-05:00

Ever get to that point?

By Wednesday afternoon, having been sick with a cold, swollen beyond what I could tolerate, having pains in my stomach and my head, feeling totally miserable because the meds I'm on make me so uncomfortable, feeling so tired that I was taking naps I couldn't wake up from, laying frozen in place for minutes after waking, unable to move, I reached a bit of a breaking point.

I took a long hard look at everything and thought "Is this it?".

You know... you get so sick and you know you're not going to survive it and you just focus on buying that time, but you never really allow yourself to think about how you'll know when that time is almost up.

Is this it?

That gave me a very bad moment, almost to the point of feeling sorry for myself, which you know I won't do. I dismissed self-pity as being a pointless waste of energy within about thirty seconds of thinking 'is this it?'. I realised, with my one last shred of common sense, which was hanging on by it's fingernails, that I needed to keep my wits about me lest I lose them forever.

I'm not kidding when I say that the mere question had the potential of bringing on complete and utter panic. I decided to sit and have a good cry, it seemed like the appropriate reaction.

I was just so tired, tired like chemo tired, more so. And I know I've just had all that radiation to my brain and the cold and the holidays and that I should just expect to feel crappy as hell sometimes, but I think that when you get to that point of tired/ill, reason goes out of the window just a bit and you can't focus on anything but feeling like something the dog doesn't even want to roll in.

Anyway, my crying therapy was interrupted by Jim coming home from work. Bless him. And of course I was in no fit state to pretend that I was really fine and just having a little crying meltdown moment to relieve stress. I told him everything. Poor guy. He doesn't need to be hearing my dark stuff... it's selfish of me to even go there with him. He doesn't mind when I do, but still... it's not just about me, the whole point is to support each other and that's got to be real, he doesn't need my dramatics. (However, I think I might just need time to be a bit dramatic inside my own head if I feel so inclined sometimes. At least it gives me something to laugh at myself about later)

So that was that.

I sat mindlessly at the PC for an hour after the crying stopped, reading the irreverent humor at one of my sites, feeling pretty numb and like I was just...fading away.

Suddenly, it was like the sun coming out. Out of nowhere I felt BETTER. Like, could get out of the chair without feeling like a 90 year old woman better. Like go into the kitchen and load the diswasher better.

How did that happen? I was feeling so rough that I was thinking maybe my time was coming to a rapid end and then suddenly out of nowhere, I'm back to being me again.

I swear on my life it's something to do with PMS. Seriously, my cycle has recently affected my condition severely. The day I went to the ER with seizures after being woken in the morning with the headaches and vomiting, was the first day of my period.

I know I'm due soon, and the meds are probably stopping it from messing with my brain tumors like it used to, but looking back, what I've been feeling this past week or so is very similar to how I've been feeling every month since at least September.

The bottom line is that later that evening, I was out at the store doing a huge grocery shop, which I came home and put away while I made meatball subs for Jim and I. (He came with me, I was too medicated to drive at that point. Heh.)

I'm not sure what happened, I'm just glad to be feeling better. Back to me again. Went for a walk out back while Jamie slept yesterday and everything.

You know, the REAL bottom line of Wednesday evening was something much, MUCH better than anything that happened to me though...

While I was putting the groceries away, my son David (11th grade) came into the kitchen and announced that he's been invited to join the National Honor Society.

I am so proud of and impressed by him.

When I think of the past two years, my cancer diagnosis and everything else we've been through, moving, him having to change schools in the middle of high school, my physical setbacks, which were so, so hard on everyone, and there he was plugging away, managing to keep his grades up in spite of it all. I can't help but think there, THERE is the real inspiration in this family.

I think it makes him a hero.

I went for my CT scans at the local hospital yesterday evening. It wasn't a terribly good experience, I'm afraid, from admissions, to radiology reception, to the stupid nurse who screwed up putting in my IV line - I told her it wasn't in right, I've had enough of those buggers to know how it's supposed to feel.

So I sat and drank the cocktail, a Margarita it isn't, but so what? It's another 'do-able' ;). And then they took me through. Did the enema, yay! Laid back and went through the first part of the scan (chest abdomen and pelvis). The tech comes in to inject the dye.... *please pardon my French or close your eyes at this point*

OH MY EFFING GOOD GOD YOU BASTARDS!!!!!!

The line wasn't in right (as I said) and the dye went through it into my skin.

Now, in the past two years I've delievered a ten pound baby, been through two surgeries, five cycles of chemo, 13 days of liver radiation and 30 days (I think? damn... dementure already?) of WBR and SRS.

I'm no chicken.

I have to tell you that stuff really freaking hurt! I yelled out as it happened and she stopped the injection and ran to get the doctor. I was laying there in agony, I'm not kidding, crying my eyes out. I was at the point of just taking the thing out of my arm and leaving when the doctor came in. He had to put an IV in my other arm, where I don't have a decent vein, so I'm bruised and cut to hell today.

I suggest that having a CT scan isn't supposed to feel like minor surgery. I was in the scanning room for over an hour. They usually only take 20 minutes at the most.

Today I have this large raised lump on my bicep it's about 5 inches high and maybe 3/4 of an inch deep, starts just above my elbow. It's the dye and it's been like that since last night. I feel like someone hit me in the arm with a metal pipe or something, it's pretty uncomfortable.

Guess where Heather won't be going for her scans anymore...

Vote with your feet.

BTW, I'm in that 'not expecting the results to be good' mode, I usually chase up my doctors trying to get my results quickly, this time I don't really even want to know!

Maybe I am a bit of a chicken...

I hope everyone had a great New Year's Eve. We had a quiet but nice one here, ate and drank, watched a DVD... it was cool.

Today, while I'm still feeling okay, I'm going to take down the Christmas decorations. Why are they so much more fun to put up than take down? It's raining so no walk today, when Jamie naps, I'll get the boxes out and make short work of the job. A new broom sweeps clean, it's a new year and there's something almost symbolic about the spring cleaning that comes along with me putting away the decorations for another year.

I wanted to say that, after reading all of your comments and e-mails to my last entry (in fact, this goes for all of my entries), I'm feeling a little bit overwhelmed. I always say to people who e-mail about this blog that you guys are nicer to me than I deserve. I find your messages to be so beautifully written and full of emotion and caring that I often cry as I read them. But that's a good thing. I just wanted to say thank you to everyone who supports me, it means a lot. You help me far more than I could ever hope to help others through my postings.

Thanks for being here. Let's try to make the journey a long one (we'll take the scenic route)!

The bonfire of my vanity.

2006-12-31T05:38:00.000-05:00

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!

Time to play The Game!!!

2006-12-23T06:02:00.000-05:00

Mua-ha-ha-ha-ha-HA!!

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.

Bastards.

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.

Meanings...

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!

That's MRS Doofus to you!

2006-12-15T07:08:00.000-05:00

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 AR15.com 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!

What do I care 'bout that winter storm?

2006-12-10T14:34:00.000-05:00

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.

Life in the slow lane.

2006-12-05T11:52:00.000-05:00

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.

Dammit.

But maybe that's not realistic.

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

2006-11-30T11:08:00.000-05:00

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.

One.

2006-11-25T11:04:00.000-05:00

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
Tonight
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
One

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
Sisters
Brothers

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

One

I Love You!

Strong.

2006-11-24T06:22:00.000-05:00

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."

Okay...

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!

I'm Still Standing!

2006-11-21T11:00:00.000-05:00

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!

Living with Sasquatch...

2006-11-17T17:33:00.000-05:00

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

2006-11-17T05:12:00.000-05:00

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.

ALWAYS HOPE

Remember that.

In a word, flatulence.

2006-11-14T08:03:00.000-05:00

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 Amazon.com. 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.

Finally arrived!!

2006-11-10T15:34:00.000-05:00

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?

Oyyyyyyyyy......

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.

Ah, insomnia, so we meet again.

2006-11-08T09:22:00.000-05:00

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.

There are Angels among us.

2006-11-06T08:24:00.000-05:00

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...

Okay, so nobody ever said this wasn't going to suck.

2006-10-11T14:12:00.000-05:00

I feel like, if I don't start writing something, I'll never be able to write again. As the days go by, I just feel more and more... numb. I have scans soon, so it's the usual scanxiety, along with not feeling well. I know... call the whaaaambulance. But I don't ... feel well, that is.

Last week I had what seemed like a stomach flu. But it's hanging on. And on. And on... And having melanoma, when we don't feel well, we get a little... antsy.

Trying to keep a grip here and failing miserably to the point where I'm not making the phone calls I need to make to get my scans set up. Part of me just doesn't want to know.

I think what happened to Kim, how quickly she passed has scared me more than I'll ever admit. You can get a bit tired of being brave, you know...? Sometimes... I can't believe I'm about to say this... sometimes you just want it to be over. You want to not have to worry any more. You want the fear and uncertainty to just... stop.

Apparently I'm not in a good place right now.

Heh.

I'll drag myself out of it tomorrow and make those calls, I promise. I know enough to let myself have a bad day if I feel like it lately. Pretending to feel all right can sometimes add to your general crappiness, in my experience.

Okay... whiny rant over.

In other news, we're being forecast with snow tomorrow (to be honest, that's probably not helping). So I'm here trying to get the place winterised waaay too early.

On a positive note though, we finally bought another car, a minivan, and plan on going on a short-ish road trip this weekend to see the fall colors while they're still with us. Something to look forward to indeed.

We're pretty intrepid, the weather doesn't really bother us much. One of my all-time favorite trips was driving down to Pa in a snowstorm to go to a Christmas store. The drive through the Allegheny mountains in the snow was heavenly. We plan on doing it again this year... there's no time to be wasted, carpe diem, or was that hakuna matata...?

Anyway in the spirit of such, this fall and winter are going to be about us going and doing things that I want to go and do. Sounds fantastic to me. I guess I'm pretty lucky.

Okay, back to whining for a sec, because I've thought of something else to whine about. My lack of patience lately. I mean with my kids, I seem to be taking a lot of very deep breaths. I mean, God knows I love them, more than anything, but sometimes it just feels like there isn't enough of me to go around recently. Not to mention I have a headache that just won't go away.

I don't know if I'm still recovering from radiation, or if I'm really sick (I mean REALLY as opposed to just terminally. Ha.), or if I'm depressed, or what. But I'm feeling just a little bit worn out.

Anyway, I'm on it, if it doesn't pass soon, I'll go to the doctor and get some happy pills. Hell, they'll have the added effect of helping me blend in with all the housewives in this area... why not?

By the way and speaking of such, I'm writing this with my 9 y/o daughter right next to me chatting on the phone and making squeaking whirly sounds. That has a lot to do with the fact that this blog is crap.

Coming soon, back by popular demand... My sense of humor!!!

It was one of those weeks, huh?

2006-10-10T14:14:00.000-05:00

Too much bad news over the past week, just too damn much.

It seems like we lost a lot of melanoma warriors, more than usual. That's hard to deal with because you know that one day it will be you. Even harder to deal with is when it happens suddenly to somebody you know and really like, somebody who seemed to be doing quite well... it's almost too much to deal with sometimes.

Godspeed, Kim. Rest In Peace.

Not so scary...

2006-10-03T07:17:00.000-05:00

Some pictures of me being radiated - well about to be radiated. What they did was allow Jim to take some pics before they got me positioned properly. In reality I was much closer to the gantry while having treatment. If I looked up into the window above me, I could see the collimator and the shape/size of my tumor. It was pretty interesting.

After the last treatment!!

It wasn't so scary. And if it worked (which I have to assume that it did), it was well worth it!

I guess you just never know

2006-10-02T06:52:00.000-05:00

A lady went missing very close to here on Friday. She sent her kids to school and went for a run. The first time people realised she was gone was when she didn't pick up her 2 year old from pre-school. Now there are four children without a mother... I can't tell you how sad this has made me.

The thing is, she didn't know when she put the kids on the bus and took the baby to pre-school that she wouldn't ever see them again. She was just out there living her life and some asshole took it away from her.

It's a shock, because it's the sort of community where people don't always feel like they need to lock their doors at night, etc... I guess nowhere is safe nowadays.

We used to live very close to the bike path she was running on, it always gave me the heebie-jeebies because it's so isolated. I've often wanted to take the baby for a walk along there, but wouldn't do it without a pistol, in the end, I just never did.

As far as I know right now, they haven't found her yet.

What this did to/for me was this; it made me realise just how finite life is anyway.

As you (my two readers) know, my greatest fear is that of leaving my children. Cancer forces me to live with that fear every single day. But I have this TIME. That lady never got this. She was just taken.

Me? I have time to make everything right for my kids. To put things in place that will - hopefully - lessen their devastation when I do leave.

TIME.

I have the time to let everyone know how much I love them every second of every day. It's really not to be dismissed.

On TV, I once heard someone say that if they were going to die, they'd rather die from cancer than suddenly because it would mean that they had TIME to put things right. (I think it was CSI) I remember watching that and thinking that it must have been written by someone who had lost someone to cancer. I could relate, but was still terrified of leaving my kids.

The terror is lessening now.

I have a long way to go yet, with melanoma, but this is something that's never far from my thoughts - nor should it be. Because if I forget about it, I'm not using my TIME to the fullest capacity. Am I?

The trick here, I think, is to be aware of this and use my TIME for everything positive that I can. Then, if I don't die too soon, we'll have had nothing but lovely positive moments with more to come. But if I do die, my family will know - really KNOW - how much I loved them.

Treatment-wise, I'm sort of stuck right now. I haven't started IL-2 yet, I wanted to recover from the radiation first. Now I'm thinking that I'll get my usual scans very soon and see what's going on in there. If there's anything new, or if I'm stable, etc.

If everything is more or less stable, what I want to do is this; I want to resect the spleen (if there's anything left in there) and the three subcutaneous tumors (I think at least two of them are dead anyway, they seem to be shrinking away and the one that isn't dead isn't growing). Then, wait for the three-month scan of my liver to see what the radiation did. If we have stability or shrinkage, then I'm going to push for SRS of the remaining three small liver mets.

If there's anything new, then I'll do IL-2.

I'm also going to get a brain scan to rule out brain mets. Because that changes everything.

One thing I DO notice since the liver radiation is that the breathless feeling I would get (which we assumed was the tumor compressing the inferior vena cava), has gone.

So... hope and pray for nothing new and that I can find my way through this by doing it MY WAY. If not, then I take that next step. The thing about melanoma is that it's all a crap shoot anyway. If I do chemo, there's a fair chance that something would still come up, so it makes sense to me not to rush into anything at this point until I see what the rads did to my liver.

I've met the funniest people recently...

2006-09-22T07:59:00.000-05:00

I don't know what it is, but you often meet the strangest people in cancer centers. I've noticed it more recently lately because I've been going there so much. In fact, it was Jim who pointed it out to me first... we were sitting outside in the car one day and he mentioned it. I told him that maybe because they have cancer, they feel like they don't care anymore about what people think. But it wasn't that. I looked around and saw what he meant. Some people are just funny.

I guess it's just like anywhere else. People are people, you know...? I'm not being mean, just sharing that thought. Maybe I'm one of them. Heh.

To me it's like this; I have melanoma. It's easily one of the most aggressive cancers out there (yes, it is). I have this freaking 11cm tumor in my liver - not to mention the smaller ones that we haven't treated yet - not to mention anything new that I know nothing of yet. What a thought. I'm pretty freaking sick, people. There, I admitted it.

Do I walk around acting like I'm sick? No... of course I don't. I WANT to be well. I'm not well, but I want nothing more than to feel like the old me again.

What I've noticed about some people is that they ACT sick... I don't mean to sound horrible, but they do. And some people who are REALLY sick, you'd never know. I've met people who think that they're the only ones with cancer. I've met people who smile nicely even though they know they're dying. I've met People who are having radiation for stage I breast cancer who think they're sicker than I am because I just smile nicely, am able to find humor in most things and still have my hair (at this point anyway).

You know... when I did that four months of chemo, it wasn't exactly a picnic. I felt like Hell for the week that I was on and it took most of the second week before I felt "normal" again. Normal being nothing like normal really is. I puked at times, had nausea, a horrible smell that I couldn't get rid of, my feet burned and I couldn't sleep. Did I complain? Not really. I just did it. That's four months of chemo, folks. It sucked, but I made it work. I still (sort of) cleaned my house, I still drove my kids to school, I did everything I could possibly do to make sure that I was still me.

Because for me, still feeling like myself was what got me through. It was the same with the radiation. I did it by being ME. I never went to an appointment looking like crap, even though sometimes I wanted to, especially at the end. But that's my survival face. Put on the mascara and lipgloss, do your hair, and GO FOR IT.

Put your face on and kick melanoma's arse out of the park.

To me, the psychological defeat of 'giving in' is unacceptable.

I'm not saying that it has to be that way for anyone else, it's just MY way. It's my way of letting mel know that I have cancer, cancer doesn't have me.

And it won't.

I mean, yeah, it might just kill me, things aren't looking fabulous for me at this point. But it will never HAVE me.

Never.

I've spent a lot of time recently just laying around, sleeping and thinking. I think I'm finally gaining some perspective on my situation. I have to tell you, forget the treatment and everything else, it's that perspective which is the hardest part to deal with.

But you need it. It's not like I've stopped fighting, or ever will as long as I have breath in my body. But I am finding peace.

Finally.

All I've got to say is....wow.

2006-09-19T06:57:00.000-05:00

I've never been so tired.

I finished radiation on Thursday, was pretty sick Wednesday and Thursday too, Friday I made it through the day somehow and then Saturday I slept all day. All day. Sunday, Jim took me out for breakfast and we went for a drive, stopped at Niagara Falls, which was relaxing and very lovely.

Now, I'm just tired, but better every day. You know when I start to feel better the insomnia comes back, right. Heh. That's how I know...

So now we have three months until we know if this worked. I really hope it did, 11cm is pretty freaking big. I remember looking up into the collimator and seeing the size and shape of the thing. WTF?

How can this disease happen to people?

My good news is that I have no burns or discoloration from the radiation. And, after that couple of days last week, no sickness or anything. I DO have some pain in the area, which they said might happen, as the liver can swell after radiation. I'm just keeping my eye on that.

I don't have a lot else to say right now... too tired, I guess and I think I need a break from melanoma. There's only so much you can take and then you need to try and forget about it for a while.

I'll write more tomorrow.

In the home stretch!

2006-09-12T10:29:00.000-05:00

I only have 3 more radiation treatments to go!

I'm quite pleased because it's getting a bit tiring now - understatement, I come out of there exhausted, it really hits me right after. I'm glad I don't have it done in the mornings, I'd be (even more) useless all day. Anyway, they're really pleased with how well I'm tolerating it, and a little surprised. The doctor told me yesterday that he has a good feeling about me because my attitude is contagious!

Yeah!!

I may not be little miss sweetness and light, but my determination to kick ass is appreciated by some.

I started writing a long rant-like blog that was bound to upset people (again) today, but just saved it, because the deep stuff is making my head hurt. Sometimes you just want to wallow in the shallow water and leave the deeper shark-infested waters alone, you know?

So... what to do next?

I'm supposed to get set up for IL-2. I think I'll take a little break before I start that though, if my scans don't show anything new and nasty. I'm pretty tapped out.

My radiation oncologist wants to follow up in 3 months with scans. I'm due to be scanned in about a month. He told me that even if that one shows the liver mets to have grown, not to panic as the liver can sometimes react that way and it's not the final word on whteher the rads worked. His word is the final word. I'm not sure if I'll wait that long to start treatment, I guess I'll check with the medical oncologist and see how long they want you to wait after radiation.

I've never felt tired like this, it's freaky. But if it's the worst side-effect I get from radiation, then good.

Never forgive. Never forget

2006-09-11T08:56:00.000-05:00

TFI Friday!

2006-09-08T07:21:00.000-05:00

What a week!

I am so looking forward to the weekend to recharge a little. Jim and I have accepted the sad fact that my car is dead and that we're going to have to buy another one. Notice I didn't say new. In spite of being pretty broke at the moment, we got an unexpected tax return check last week, which we've decided to put to use and change my vehicularly challenged status. I have my eye on a nice little minivan. No, I'm not a soccer mom, I just have a whole bunch of kids. Besides, a minivan is good for transporting rifles to the range in too...

I didn't fare so badly after treatment yesterday and still don't really have any of the side effects they told me I'd get. I was saying to Jim on the way home about the oncology social worker we'd spoken to before treatment started, who'd told me that having the abdomen radiated was going to be so much more awful than being on Temodar and that there was no way I'd be able to handle driving myself to the appointments. I'm here to tell you that in no way is radiation worse than chemo. No freaking way. I hope I see her again.

The school thing is looking promising. The kids love their new schools. They came from a school district that has an excellent reputation (as does this district) and is quite small, with small class sizes, etc... This district is bigger, I think it has the advantage of having more resources. David was able to get all the courses he wanted (aside from AP Psychology, which they don't offer), as opposed to his last school where at least one of them was full. He's considering doing the prep for AP Psych on his own and taking the exam independently.

I had a bit of a fight with Jim last night. He's tired and stressed too... I hate fighting with him, I love him so much and he's so good to me. Just sometimes he gets this stubborn head on which infuriates me and I push back, which never ends well. Two strong personalities in one house is bound to cause some sparks sometimes.

It's not all peace, love and transcendental serendipity when you have cancer. You don't suddenly become this holy, serene, saint-like creature just because you have this. You're still human and still capable of feeling everything that humans feel. You're not obligated to "rise above" the things that irritate you. You can scream back if you want.

It's like this: Cancer gives you a different perspective. You find that there are things that used to matter, that now don't matter. People in your life who used to irritate you, who now cannot. And of course, the are the thoroughly toxic people who you ruthlessly cut out of your life because dealing with them isn't worth the headache, or the energy it takes to not let them get to you.

BUT...

There are going to be things that still irritate you. Things you want to have a little rant about. And that's fine. Dealing with cancer is probably one of the most stressful things that can happen to a person and everyone has to find their own way of dealing with it. For some, serenity works well, for others it doesn't. Apparently, I'm not good at serene.

One thing cancer makes you realise is how strong you really are. It's quite surprising, the resilience of the human spirit. Our ability to adapt and fight back on an ever-changing battlefield.

I said in an earlier post that I want to do this with grace and dignity and set an example for my children. I think I'm achieving that in spite of my recent anger. Most of my screaming was in my head. Outside of this blog, I was strong and incredibly sweet to my loved ones, I loved them as hard as I could every second of every day.

My fellow man was a different story. Heh.

Okay... I'm done ranting.

2006-09-07T10:06:00.000-05:00

I'm aware that I've been on a bit of a rant rampage lately. Sorry about that. I needed to get it off my chest.

It's surprising really, because I'm usually not one to get too hot and bothered about things. Jim was shocked at my reaction to the rude girl yesterday. I'm more the "It doesn't matter" type.

So I admit that this week, my buttons have been pushed - badly - and that I was too exhausted to shrug it off as I normally would. None of it is really 'life or death', but the thing is, I deal with a life or death situation every day and it gets old. And sometimes I just want to scream.

I know this is a process and that I have to work through all of the different phases, I just really want this one to be over now. At first being angry felt good, now it's just draining. I think I'm coming to the end of it.

I wonder what's next...?

It's a journey all right, an insane rollercoaster ride that circles the outer rings of Hell. Stop the merry go round! I want to get off!

I'm laughing at myself as I write this. Sleep deprivation is a terrible thing. It's making me loopy!!

I think the thing about the anger is, that it felt good while it was on MY terms, but recently having people piss me off, I'm not choosing anger, it's being forced on me, if that makes any sense. It's no fun anymore.

Somebody call the Whaaaambulance.

Oh crap. I hope I don't get whiny again. Angry was soooo much better than whiny.

You can't fix stupid.

2006-09-07T07:14:00.000-05:00

Attention!! Your Bullshit Quota Has Been Exceeded!! Further Exposure To Bullshit Will Cause This Device To Reach Critical Mass Resulting In Explosion And Death To The Stupid!!

This started flashing across my Bullshit Meter (conveniently located in my skull near the Lie Detector, just above the PMS Switch), like one of those public service announcements that run across the TV screen, last night. It's still flashing now. I think I'm supposed to upgrade or something. Better yet, I think I'll declare myself a no bullshit zone.

I'm still wondering what it is about me that people think giving me crap is going to end well for them. I'm not joking when I say that my tolerance for bullshit is at an all-time low, verging on non-existant.

My latest experience took place yesterday evening, on the way home from treatment, at the thruway rest stop where we habitually get something to eat on the way home.

I came out of radiaton oncology feeling like something you'd scrape off your shoe. I was trying to hold it together and managed quite well until we got to the rest stop. I headed for the ladies room to have a quick meltdown, which consisted of me sitting on the toilet shaking and crying. It only lasted a few minutes.

Anyway, I came out and went over to the McDonalds counter where Jim was trying to order some food. Someone had interfered while he was placing his order and screwed it up, he politely mentioned it and the girl started arguing with him about it. She was unbelievably rude. He's pretty assertive in a calm "I'm in control" sort of way, so he repeated himself, unable to believe that she was actually arguing with him. She wouldn't shut up, she got really nasty. I said to Jim, "Why is she arguing with you?" and she responded to me, "It's my opinion and I'm entitled to voice it." I didn't like her tone, but before I could respond in kind, Jim told her, "And I have the right to choose where I want to eat. Just cancel my order and give me my money back."

The manager came over and gave him his money back and we went and got pizza instead.

Now, it might seem trivial to you, but bear in mind that I've had to deal with a lot of crap recently and I'm pretty much tapped out in the tolerance department. Sad as it may seem, I really enjoy stopping there on the way home to eat. We sit far away from everyone and there's a nice view out the window, it's just about the only time all day that I get to just chill out. I need that time. But now I'm annoyed at the dumb girl. Feeling like she took it away from me by acting like a little bitch, see?

The problem with behaving like a bitch is that; a) someone is going to come along and be an even bigger bitch, or b) you're going to inadvertantly do it to the wrong person, the one who's having a really bad day.

Unfortunately for her, yesterday I fell under both categories. I make no excuses for myself, it's been a rough week.

I finished my food and we sat for a while talking, then as we were leaving, I went up to the counter and asked for the shift manager. I told him right in front of her I wanted her name because I was going to call corporate and make a formal complaint. He was most apologetic and gave me the information I wanted. Now, I don't actually know if I'm going to call, but I DO know that I ruined her night, just like she ruined my breathing time before I had to go home and be mommy again.

Petty? Probably.

Oh well.

Because, as a former customer service drone, let me tell you this... when you work in customer service your opinion DOESN'T MATTER and you're NOT entitled to voice it. The customer is always right, regardless of whether they're the biggest asshole to ever walk the face of the earth. The only thing you, as a customer service employee, have the right to do is shut the fuck up and smile nicely. You can talk about the asshole behind his back after he's gone.

I think my bullshit meter has been tripped so often lately because I've had to deal with more people than usual. For quite a while now, I've really only had to deal with medical professionals. I'd really forgotten quite how stupid some people can be.

But enough of that crap. Let's talk about insomnia.

It's a crap shoot right now. Sleep is like an eagerly invited guest who doesn't always show up. Oh, dear friend, I miss you.

I have been up since 2:11am. That's when Jim got up to go to the bathroom and woke me up. I lay there for the rest of the night with my mind racing. Of course, thinking about cancer and everything. Every time I tried to relax and medititate myself into oblivion, the thoughts crept back in. They, like melanoma, are insidious.

Fortunately for me, I am now entering the numb stage of sleep deprivation.

I think I'm going to have to bite the bullet and get something to help me sleep. I'm just scared of feeling foggy during the day, it makes being a mommy so much harder - of course, sleep deprivation doesn't do much to help either.

If anyone has any good remedies for insomnia, please let me know. I'm hesitant to resort to prescription drugs for this, scared that I'll become addicted. Maybe the answer lies in less than legal measures - I didn't say that out loud did I?

Just kidding.

Maybe today I'll get a nap.

Insert funny yet clever title here.

2006-09-06T05:01:00.000-05:00

I'm tired folks.

The holiday weekend for me consisted of shopping to get the kids ready for school. It was pretty exhausting on top of having radiation. What a rat race...

The thing is, I was ambiguous about sending them to school this year. I was thinking that, if this was my last year, I'd want them home to have that time with them. I have so much to teach them that has nothing to do with school and homeschooling is very forgiving of illness. But there was always this feeling in the back of my mind that they might need to have their own lives away from me and cancer, so I allowed myself to be talked into the decision to register them this year.

I'm not sure yet if I regret it or not...

Anyway, today's the day. Clothes are bought and washed, hair is done, backpacks are packed and I'm ready to collapse in a heap after they leave. I am SO going to be taking a nap today.

Radiation is going okay. It's making me a bit tired. I saw the doctor last night and the pain I'm having in the treatment area isn't usual, but they think it's possibly inflammation. All in all they're pleased with how well I'm tolerating treatment. Today is day 7, so I guess I get x-rayed today too. Oh well, every little helps. They're keeping a pretty close eye on me and my favorite doctor was back from vacation yesterday, which made me happy. He's so cool and I feel completely safe and confident with him. That's important.

Jim and I still had shopping to do, so we dragged ourselves round the mall when we got back from Rochester.

I am beyond tired. I'm in that freaky little twighlight world you usually experience when you haven't slept for a few days. I'm mentally exhausted too, due to spending 5 hours on the phone yesterday trying to sort out David's school bus. It's not the actual transportation that had me so stressed, it was the sheer abject stupidity of the people I was dealing with. They WOULD NOT help me. They were so totally stupid. They'd ask for all my details, we'd talk for a few minutes and they'd ask for the details again. Like that.

I felt like the guy in the movie Falling Down. Sometimes it feels like some people exist only to irritate the hell out of you and fuck with you. They are so freaking dumb that they can't possibly serve any other purpose.

Idiots.

Nothing got resolved yesterday, but my son is getting on that bus if i have to step out in the road and force it to stop at my house.

My radiation oncologists are strongly urging me to call my medical oncologist and get set up for IL-2. I'm not sure how I'm going to do this with a baby at home and three kids in school. I don't have anyone to watch the baby while I'm in hospital or help with the kids. It's amazing how, when you get cancer, people say "if you need anything at all, let me know" then disappear off the face of the earth.

I guess I'll have to keep the kids out of school while I'm gone - another reason I wanted to homeschool this year. But I was pressured into putting them in school, because I'm the only one who sees the big picture around here. My poor kids.

Stress does horrible things to me. I know it sounds trivial to say that yesterday stressed me out to this point, but it's such a lot of work for me to get to and stay in the place I'm in right now, where I can cope with all of this, that outside influences stress me out and it has a knock-on effect for days after.

So... an hour or so after I started writing this and David is gone, the bus couldn't NOT stop for a strapping 6'2" highschool junior. He looked so handsome too... he's almost a man and seeing the kind of man he's going to be makes me so proud.

With everything that's happening to us, all of this CRAP, I know it's only going to serve to make him a stronger, more compassionate person. But I wish it wasn't happening. I wish my kids weren't facing this with me, but whatever happens to me, this period of their lives WILL shape them differently and probably for the better in a lot of ways. I have this feeling that I can help influence this; if they see me being strong, it sets an example of how I want them to live their lives. You don't have to have cancer to LIVE STRONG. I so want to be here to see them into adulthood.

Can wanting possibly be enough? If you want hard enough and are willing to do anything to make it happen?

I hope so.

Isobel got on the bus while ago too, she looked so brave standing out on the driveway alone waiting for the bus. She's so used to going to school with her big sister and now she's not only going to a new school, she's doing it alone.

Jessica just left, she's so nervous. Today is her first day of middle school. She'll be fine. She's one of those kids who gets on beautifully at school, loves academic work, makes friends easily and is totally her own person. Her teachers always adore her and she has this knack of becoming friends with the boys who are into sports, which is pretty cool. Maybe she'll go out for track again this year, last year her event was long jump and she did pretty well.

And mommy? Mommy can finally relax... It's just me and Jamie at home now and he's easy.

I just re-read this and it's sort of rambling, there's probably a point in there somewhere. In fact, I think I have it. Watching my kids going off to new schools where everything is unfamiliar and, from a child's perspective, a little scary reminds me that sometimes you have to do what you have to do no matter how scary it seems, or how badly you just want to pull the covers over your head and ignore it all.

I took inspiration from my children today... If they can go off into an unfamiliar world with a smile and a wave, despite everything that's going on with their mother, then I can certainly face the 'what next?'.

Right?

There ain't enough coffee in the world...

2006-09-04T09:01:00.000-05:00

I'm knackered.

I fell asleep at 9 last night and woke up at 7.30 this morning. And now a couple of hours later and I'm knackered. It must be the radiation.

I was having some pain last night too, in the area of my liver, I'm thinking it was my good cells that may have got a dose of rads mending themselves or something. I really hope we didn't just piss mel off...

Something I forgot to mention before is that when I saw the doctor last week, she told me that, looking at the CT they did for my treatment preperation, the MOALT hadn't changed or grown in the month or so since my scans. I was surprised because it had grown almost 2cm in the three months previously... Maybe that last huge round of Temodar had some effect, or maybe my immune system kicked in somewhat from my diet changes. I know it doesn't really mean anything when you're talking about an 11cm tumor - or maybe it means a lot given how fast growing and aggressive it is. It did feel like a very tiny victory.

I just wanted to say to Lee, regarding the comment you left, what you're doing sounds cool and I'd love to be part of it, thanks. You can email me by clicking on the about me link to the right.

And to Carver, I read the article The Challenge Of The Positive Attitude you linked to on your blog and found myself nodding in agreement as I read.

I like to call it the tyranny of positive thinking. It seems to me that the pressure we place on ourselves to be positive sometimes feels like it can be more damaging than helpful. Repressing our emotions can't be a good thing. I so relate to everything you said to me in your comment.

Like I'm fond of saying; unfortunately, I didn't suddenly become Mother Theresa when I got cancer.

There was no striking moment of clarity, no bright light and choirs of Angels singing in the background. No joy at the 'gift' I had been given, or the 'lesson' I was to learn from it. Just this soul-wrenching, heart-stopping, heartbreaking, endless moment of utter terror, followed by tears, anger and finally a girding of the loins, a gritting of teeth and the realisation that this is the burden I have been handed so I'd better find a way to deal with it.

I'm still working on that part.

This quote from the article pretty much sums it up for me...

"Is There a Difference Between Optimism (Positive Attitude) and Hope?

Jerome Groopman, M.D., author of The Anatomy of Hope, elaborates on the above idea by explaining that a positive attitude or optimism is the thought that “Everything is going to turn out for the best.” But life isn’t like that. Sometimes bad things happen to wonderful people. Hope, in contrast, does not make that assumption, but rather, in a clear-eyed manner, assesses all the problems, challenges, or obstacles, and through information and education seeks and finds a possible realistic path to a better future. This future is often unknown and unknowable but is constantly re-assessed based upon new information. A person with true hope will experience a wide range of emotions including fear, anger and sadness and through it all will try to move forward through all the difficulties."

Tough times don't last. Tough people do.

2006-09-03T07:38:00.000-05:00

I just like that saying.

It doesn't mean that if you're tough, cancer won't kill you though. Because there's nothing you can do about that. It's more like, even with things you can't change, how you react to events is the key.

Back when I was diagnosed with cancer, I reacted badly, especially when I realised that I was stage III. Looking back, do I think I'd have advanced had I reacted differently? Probably. But would I be in the situation I find myself in now if I'd have done my homework, changed doctors and insisted on scans back then? I don't know...

I can't beat myself up about it. I was let down badly by my doctor. Yes, we should take a certain amount of responsibility for our own care. But I don't think I was really the one who dropped the ball here.

And now we have the MOALT to deal with.

It struck me yesterday that I'm actually quite lucky. I read of the passing of another melanoma patient and it was shockingly fast. Within a couple of months of advancing to stage IV.

I think I was stage IV all along, given the size of this tumor. And the mets seem to (so far) all be confined to the same area. I by no means feel that melanoma is out of control in me. And for that I am thankful. I've read accounts of people in whom it has advanced and advanced ruthlessly in spite of treatment. I'm not saying that it won't happen to me eventually or even soon, but I don't feel like it will at this point.

I haven't been responding to death notices lately. I just can't handle it. I'm too scared of it myself right now and don't want to think about it. I hope people understand and don't just think I'm callous and uncaring. Every loss hits me hard, especially those who leave behind young children, I have to distance myself from that right now for my own survival. I need to keep my defences up and stay pissed off. If I allow the sadness to creep in, it's very hard for me to shake off.

Selfish, I know. But I'm the only me I have. I'm the only mommy my kids have and I can't function with fear and sadness ruling my head. I have to shut it out.

I can't shut out my emotions when I write. Writers train themselves to tap into their emotions and experiences, it's not something I can switch off, unfortunately...

Not that I've been writing much lately... Just my blog and a few smartass remarks on Arfcom. Truth be known I'm a bit scared of what might come out if I really tap into that emotional bottomless pit right now. I tried to write a letter to my aunt the other day. I printed it out and it read like a nightmare. I threw it away and tried again without digging too deep. I ended up sounding glib and shallow, so I tore that one up too. I think I'll settle for a card.

We went back to school shopping yesterday.

O.M.G.

Office Depot is usually really easy. Usually. Yesterday I was terrorised by a family from India (I think). Everywhere I was they wanted to be - and there were about 16 of them. They brought the whole family, including granny, to go shopping for school supplies. All talking at the top of their voices in whatever language it was they were speaking. They'd stop to look at pens and the whole family would range along the aisle making it impossible for anyone else to see anything.

On of the kids a young teenage boy, sort of accosted me as I was wheeling my cart along. He grabbed my cart and slammed into a display. I looked at him in shock, then realised that the mother had seen it. She looked at me, but didn't say anything to either me or him, it was a sort of "what's your problem?" look. No sorry, kiss my arse, nothing.

Lovely.

I couldn't even give the woman the verbal smackdown because she didn't appear to speak English. Sheesh...

Yep. I'm still pissed off. About everything.

It feels good.

I could get hit by a bus too.

2006-09-02T16:06:00.000-05:00

I ran across this article and it make me laugh, but at the same time, I could so relate to what the author is saying. I thought I'd share it here for anyone who hasn't seen it before - it might elicit a wry grin at the very least. I don't have breast cancer and that's not what this blog is about, but I know that most of us living with cancer have heard at least one or two of these comments at some point on our journey...

I COULD GET HIT BY A BUS TOO
Copyright Susan Frisius

"You never know when you're going to die, after all, I could get hit by a bus."

Since I've never known anyone who has been hit by a bus, I don't understand why friends and acquaintances often say this when I first tell them I have breast cancer. Do they think the possibility of their being hit by a bus equals the possibility of my dying from cancer? Besides, I could get hit by a bus too.

"You're lucky you have a treatable disease."

Don't get me wrong. I'm thankful I wasn't told, "There's nothing we can do," but losing pieces of my body, having a radiation machine set off a nuclear war in my breast and getting my veins filled with toxic chemicals doesn't exactly make me feel lucky.

"You'll be fine because you have a great attitude."

If attitude really matters, why did I get cancer in the first place? Or does attitude only matter after you get cancer? Right now my attitude about cancer is lousy. So what does that mean?

"Don't worry, if your time's not up, it's not up."

If that's true, why did I bother with the surgery? Should I cancel the rest of my treatments? Do doctors perform surgery and give chemo and radiation for no good reason? After all, "if my time's up," treatments won't help.

"I've read that anger and stress lead to cancer."

Great! Now I caused my own cancer.

"You should simplify your life."

It's pretty simple now, all I seem to do is go to medical appointments.

"I've read that people can keep cancer from coming back by changing their diet. Maybe you should try to improve yours since it didn't keep you from getting cancer. That's why I watch everything I eat."

The person who tells me this knows I only eat natural foods, cook everything from scratch, don't eat junk foods and rarely eat meat.

"You eat white pasta," she says when she sees my puzzled look.

Of course, she eats white pasta too, but calls the flour "semolina." Does she really think if I had eaten pasta with "semolina" on the label I wouldn't now have cancer?

One person says, "If you really want to live, you will. Just never give up. When people give up, they die."

If I were hit and killed by a bus would she think I died because I gave up?

Another person tells me to visualize the cancer shrinking. She says, "If you really work at it, you can eliminate it."

Most conversations end with "call if you need anything."

I don't have the energy to call anyone - I can hardly feed myself and get to my medical appointments.

Why do intelligent and sensitive people who care about me say such things? Can they really believe I'm responsible both for my cancer and the outcome of my treatments?

I think these people want to believe cancers are caused by a person's poor emotional state or diet. This lets them think they won't get cancer because they think they eat properly and handle their lives and emotions well. Unfortunately, it also makes them feel uncomfortable around me because they're afraid they'll find out their attitudes and diets are no better than mine. So I hear, "How can you be so cheerful?" and "All that yogurt can't be good for you," and "Put your daughters in foster care, they're too stressful for you."

I have no doubt that everyone I talked to about my cancer was concerned about me and wanted to help me keep a positive outlook. I'm sure they were sincere when they said, "I'd like to have you over for dinner sometime, but I know everything makes you sick," or "It's good to see you out grocery shopping, I was worried because I hadn't seen you for a while."

I'm sure friends would have been happy to help if I had called them and asked for assistance. Most likely they thought they were being considerate when they didn't visit or call "so I could rest." I think they just didn't know what to do or say.

So what would help me while I'm being treated for cancer?

Drop in or call. The only way you'll know what I need is if you keep in touch. Remember, if I'm out in the community, I'm well enough to be out. It's when you don't see me that I need your support.

Don't wait for me or my immediate family to ask you for help. It takes too much energy and I don't like admitting I can no longer cope with everyday living. When you want to help, don't ask what I need, just do it. Bring me a meal (white pasta is fine), wash my floors while I sleep, take my children to a movie, get the oil changed in my car, pick up a few vegetables for me at a farm stand, change a burned out light bulb, take my empty yogurt container off the coffee table and throw it out.

Don't minimize the illness that scrambles my life by telling me about simple causes and self cures. Everything I've held important has been touched by it - my ability to raise my children, my work, my independence, my social life.

Don't let your fear of hearing about cancer keep you away. While cancer has become a big part of my life, it's not my whole existence and I am able to converse on other subjects.

Remember my immediate family. My cancer affects them emotionally as much as it does me. My kids and parents need their friends' support now more than they ever did.

If I let you know your company is too much for me at the time, come back. If I don't answer the phone, call again. I need to know I can count on you because I'm temporarily unable to count on myself.

If you're feeling helpless because someone you know has cancer, don't. Take them a meal and eat it with them. Talk to them as you wash their dishes. Play a game with their kids so they can hear laughter. Pet their cat until it purrs. Bring over a book and read it to them.

Both of you will feel better when you take action.

Beware! Not for the easily offended!

2006-09-01T11:13:00.000-05:00

I don't know where to start today, my mind is whirling. I figured that if I just start writing, something will come. That's how I write creatively, so maybe it'll work for blogging too.

It's been hectic, I got the kids registered for school, so all I have to do now is buy clothes and supplies, that's easy.

Today is day 5 of radiation treatment. I guess I'm lucky in a way because the type of treatment I'm having isn't the 30 rounds type. With me, it's closely targeted and they're giving it the maximum dose they can each time up to the prescribed dose, which will take only 14 treatments. They think that this aggressive approach will work well with melanoma because of the way it grows.

I just wanted to talk about the treatment a bit, in case anyone reads this who might not have considered radiation as a treatment or who has considered it, but is nervous or scared of it.

It's fine.

I'm having the 11cm MOALT radiated and so far, I'm just a bit more tired at night and also, when I get into bed at night, my stomach hurts a bit, like I've been hit. No nausea or anything.

I asked them yesterday if there was anything coming out of the machine as I was feeling too well. They laughed at me, but said that some people just don't get bad side effects. I might still get them, but will take feeling good while I can.

In other news, there's a big bru-ha-ha about the new gene therapy at NIH. It's worth looking into, not everyone responds, but someone's got to be one of the ones who do, so why not me. Assuming I can get in that is.

I'm still planning IL-2 as my next step, assuming also, that I don't have any brain mets lurking. Scary thought.

I think I may have a new subcutaneous lesion, but I'm not sure, I'm just watching that spot to see if anything materialises. It's funny, at one time I'd have panicked about it, but now only stress about the actual life-threatening tumors. I'm not even stressed about my other three small liver tumors because I know that failing all else, I can zap them with Novalis. Just the MOALT... that's my Goliath right now...

I'm aware that I might have pissed some people off with my comments regarding God and faith in a previous post...

I'm sorry about that.

But you have to realise that this is happening to ME and I'm allowed to feel however I want to feel about it. Anyone who thinks I'm a bad person for questioning my faith I will say one thing; when you have an 11cm tumor in your liver that's going to kill you imminently unless you can somehow - by some miracle - stop it, you can get back to me on that one. Deal?

Cool.

On the subject of religion... Am I the only one who gets sick of hearing about God's will and how some are spared because of it? How can someone say something like that? That God thinks of one person as more worthy somehow than another and saves them while letting another die?

Comments like that are like a slap in the face for people who have lost someone they love to cancer, to children who have lost their mommy or daddy.

It's utter bullshit.

There is no big plan involved here. Some people get cancer, some survive, some don't. The ones who don't are no less of a loss, no less worthy of life than the ones who do.

The next person I see saying crap like that I'm going to metaphorically bitch slap them mercilessly. (Well.... maybe not, maybe just mentally. With mental being the operative word. Hah!)

Can you tell it pisses me off? (LOL)

And again, I'm sorry. Because I know that I'm inadvertantly going to offend some people by saying that and it's really not my intention. But you know what? Get over it, because I am offended by the suggestion that some are more worthy of being 'saved' than others. It evens out.

If this IS all part of God's plan, I've gotta tell you, I don't think much of His planning skillz. I think I'll follow my own plan, thanks.

What's my plan? I hear you ask...

To survive, of course.

I apologise for seeming a little strident today, I've just read more of that type of comment than usual today and felt like venting.

It's my blog and I can vent if I want to, vent if I want to, VENT IF I WANT TO!!!!

What? Oh... sorry... I realise I can't sing, you can remove your ear plugs now... *embarrassed*

So to celebrate the first week of radiation under our belts, Jim and I are going to stay in Rochester and have dinner this evening. It'll be nice to just sit and relax...

It's amazing how, when you have cancer, even the little things are special. Yesterday I came out of the cancer center - Jim had stayed out in the car, he takes a combat nap while I'm in there - and he wasn't there. So I sat on the bench outside and waited for him. The sun was shining and it was cool and breezy. I just enjoyed the fresh air and simply BEING. I have lots of moments like that...

Jim came back, he'd gone to look for a vending machine to get a soda, the machine ate his money and then he got lost trying to get out of the place. A nice lady helped him and once outside, he told her, "I have no business going in there and will never do it again". I could see her laughing from right across the parking lot.

Now that I have vented my spleen (while I still have one!) I'll leave you with this thought:

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.

The only job where you start at the top is digging a hole.

2006-08-29T19:26:00.000-05:00

Treatment #2 down and feeling good.

I saw one of the doctors, a really lovely lady who had all the time in the world for me. They're rooting for me. It feels good.

Another thing that felt good was when the nurse called me in to be weighed, etc... she looked at me, sort of did a double-take and told me sympathetically, "you're too young and pretty to be here"... Also I've lost 5lbs.

The STs were nice, I was early again today but explained that Fridays seem like they're going to be cutting things fine. They were all right with that, they see me making an effort. Maybe I should stop calling them stupid now.... Nah, give it time.

I come out of there ravenous and Jim and I stop at a service area on the way home to grab some food. Tonight I inhaled a quarter pounder with cheese and fries, a coke and two cookies. It's like my body is craving high calorie food right now.

After we'd eaten and got back on the road, I saw a rainbow. We followed it most of the way home... it felt like a sign.

I love the smell of radiation in the morning... it smells like... VICTORY!

2006-08-29T09:31:00.000-05:00

Well actually it doesn't smell at all. You can't see radiation either. But I felt it last night.

I got to my appointment early, the STs were thrilled - actually the strident one wasn't there, it was a very nice lady and a guy who didn't give a rat's arse that I had a late appointment.

They got me positioned and did their thing. It was so interesting. I got to look up into the collomitor as I was brought back under it and saw the shape of my tumor - damn it's big! They zapped it and then the collimator changed shape slightly and the machine moved slightly to the right and zapped me again, then the leaves changed and it moved again, this happened a few times as they radiated the tumor from about five or six different angles.

I got this funny taste in my mouth after about the third zap, but there was no pain or anything. Just this sort of rippling feeling where the beam hit, very subtle, so subtle that it might have been my imagination.

I felt a bit sick and shaky as I walked back to the car... nothing major. As we headed home, on the drive I started to get this acid reflux type of sensation. We stopped at a thruway service area and got something to eat and I was fine. I did have a sudden sharp pain in the area of the tumor as we got closer to home, I think (hope!) we hurt it.

Aside from those extremely minor events, I felt fine. I guess they have to warn you to expect the worst and maybe I won't be as lucky next time, but it's a relief all the same.

It's also a relief to be finally doing something. I have no reason to think this won't work - in fact, the chances of it working are much higher than the chances of chemo working. Sounds good to me.

Melanoma don't surf!

I lay there while being zapped picturing mel shrivelling up and dying, thinking DIE! DIE! I'm making a point of visualising this every time I have a moment to think. I sit and take a few deep breaths and picture it in my mind.

You hear a lot about the mind-body connection when you have cancer. I always used to think that the body fed back off of positive thoughts, until I got the crap kicked out of me with the realisation of how big and fast growing this tumor is anyway...

All I know is, if you don't remain focused on killing it and believe that your treatment will work, you're shooting yourself in the foot before you even start. Why sabotage yourself? What if there IS something to all that? I'd rather try and have it fail than not try and have it fail, if you know what I mean. Because then if it fails, I know that I gave it my best shot.

Anyway, they x-ray me with the treatment machine every 7 days to see if the mass has shrunk so that they can reduce the radiation field to fit it, so I think this might be a treatment that we'll be able to see progress on as we go.

And there WILL be progress.

Let me see your war face!!

2006-08-28T09:57:00.000-05:00

Okay so my tolerance for BS is non-existent today. It's one of those days when you know you should just stay off the Internet and let the idiot whiny beotches have it. Most of the time I manage to ignore, or shrug off certain things, but occasionally I feel like addressing them. And I don't think that's a good idea, as it rarely ends well. Thank God for Arfcom, a haven of politically incorrect sanity (LOL) in a sea of PC BS.

And anyway, life's too short. I mean really. No... REALLY.

So I'm sort of nervous about today. They told me that most of the side effects I will experience will be cumulative, except for the gastric issues. Due to the fact that they're radiating my liver, which is so close to my GI tract, they told me to be prepared to feel sick as a dog (I think that's the technical term).

Fair enough. It's not like chemo makes you feel like a million bucks.

Something that helps me keep things in perspective is knowing that there are children going through the same thing, and worse. If you've ever seen how children weather cancer treatment, you'll know what a truly humbling thing their bravery is to see.

Especially for a 38 year old cry-baby who's scared of a little bit of radiation.

Actually it's not the radiation I'm scared of, I'm looking forward to starting this treatment and sending mel to a firey death. I'm just nervous about the unknown. Once I know how bad the side-effects will be, I'll just deal with it. It's the unknown that will get you every time.

No matter how bad it is, I'd do it a thousand times over to kill this cancer.

Melanoma is a big old poopy head.

2006-08-27T10:12:00.000-05:00

The only courage that matters is the kind that gets you from one moment to the next.

It's been quite a week. Brain farts abounded. To start with, I accidentally deleted a post, which as anyone who uses this format knows isn't easy to do by accident.

I put the baby down for a nap the other day, went downstairs to do some laundry and then started panicking because I didn't know where he was.

I missed the practice run for my radiation treatments on Wednesday. The card I had said the 28th, but then, the 8 could have been a 3... I just blamed them and don't feel bad about it, I'll expand on that further in a minute.

I sat and wrote a long update on Friday morning, then Firefox quit and I lost it all.

That sort of week.

Do you get that I've been freaking out? Does it show?

Freaking out for obvious reasons; the MOALT (mother of all liver tumors), the treatment - I'm scared of the side effects, scared that it won't work and just stressed out in general.

There's also the small matter of my car failing inspection and waiting to be fixed, but Jim having no time to fix it because he's going to be driving me to Rochester every night for the next few weeks.

I haven't registered the kids for school yet. Haven't been able to go anywhere. In the scheme of things, it's not the most pressing matter - that would be staying alive - I can always homeschool for a year.

I try not to sweat the small stuff, but the thing is, the small stuff combines to make a big thing and I DO sweat the big things.

So anyway, I ended up going for the practice run thing on Friday. They asked me if I could get there for 5:30, I told them I'd try, but would definitely be there for 5:45, which was my scheduled time.

Bear in mind that it's 60+ miles away through rush hour traffic on the I-90 on a Friday afternoon. We arrived at 5:40, which I thought was pretty good as we'd left as soon as Jim got home at 4:20...

I walked into the place and the tech pounced on me:

Her: Did you request the 5:45 appointment? Do you work? (but very strident)

Me: Yes (well, Jim does), and I have to come from Buffalo.

Her: Well are you going to be able to make it on time?

Me: Well I'm here now aren't I? And five minutes early... (this is accompanied by 'the look', believe it or not I can be a bit intimidating when I want to)

Her: (backing down a bit) We were expecting you earlier.

Me: (trying not to lose my patience) I did say that I'd try for 5:30, but that I'd definitely make 5:45.

Her: Well as it's the last appointment of the day, we don't have a very big window.

Me: Why do you need a window? Are you planning on jumping?

Her: *Blank look*

#2 Tech: You have to be on time, we don't have a big window at this time of day.

Me: *rolling my eyes* You mean like I was 5 minutes early today? Don't worry about it, I'll be here.

What I think is this: Last week was their first week of working until 6pm. And I don't think they want to. When we were trying to schedule the appointments, there was some reluctance to give me the last slot of the day. They called in the social worker and everything - it's okay, she left not knowing whether she'd been snake bitten, shot, powder burned or f- oh never mind...- They then tried to tell me that they'd already given it to someone else. Then Jim insisted and they supposedly called the lady who agreed to take an ealier appointment. But I think they just didn't want to do it.

Tough shit.

This is what we're doing and they need to get over it. I think I made myself clear on Friday. The stupid thing is, even with all their idiotic shrieking, I was out of there by 5:50.

*Insert pic of me pulling retarded face here*

They really do need to get over it. I was wondering, do they not realise that they're dealing with people who are in a very bad situation? Do they not realise that a little bit of compassion goes a long way?

Bottom line; this is what we're doing and if I AM late a couple of times, they're just going to have to get over it. A few minutes out of their lives to save mine seems like a fair trade, it's a no-brainer as far as I'm concerned.

So anyway, that was that.

In other news, my pre-pregnancy jeans finally fit. I don't think I'm losing weight because of the malignancy, I think it's my diet change and it's been slow. I've cut out sugar completely, because melanoma likes glucose. I'm sort of following a similar diet to the one I was on when I had gestational diabetes, but have also cut out a large portion of the fat. I'm eating loads of veggies, not so much fruit and making sure I keep my protein intake up.

I didn't feel well last week - I know... the whaaambulance is on it's way - I think it was probably stress. The dumb thing is, as soon as I put those jeans on, I felt like a million bucks. It was such a psychological boost.

The thing with the stupid techs did me good too, because it made me angry. Anger is good. I feed off of anger. It is a great motivator for me. If something seems insurmountable, I'll make it work out of sheer bloddy mindedness, if you tell me it can't be done, I'll do it just to spite you. Passivity always leads to depression for me. So I'm angry. Angry at the stupid techs (or STs as they will now be abbreviated to), angry at melanoma and just pissed off in general, but in a positive way.

And yes, I am probably insane... aren't we all?

I was thinking about courage the other day. And here's the thing: I don't think that courage lies in pretending to have a positive attitude so that people think you're terribly brave. I think courage lies in being deathly afraid and doing it anyway.

A friend of mine, a former British Army Special Forces solider once told me when I asked the question about fear, courage and bravery; "Don't think that I never got scared. Of course I did. But you have to stay focused, you learn to control it, to channel the adrenaline it creates into aggression. So it helps you fight. Fear doesn't have to be a hindrance as long as you don't let it paralyse you. Rather than letting it control you, you control IT and use it to your advantage."

I still maintain that he and his kind are among the bravest people on the planet. But he has too much humility to admit that...

So this is what I think; It's all right for me to be as scared as I am. I think I'd be stupid not to be. As long as I stay focused on the task at hand, it doesn't matter how many processes I go through, as long as that focus never wavers, as long as I keep the end result in sight.

To give myself credit here, I think it took a certain amount of balls to stand up to my doctor, an alleged melanoma ex-spurt, and tell him that I wasn't going to do the treatment he'd decided on. I've looked outside the box and, for better or for worse, I'm doing it my way. And I'm not looking back, there are no 'what ifs'. This is what we're doing, on the offchance that it doesn't work, I have Plan B. That's as good as it gets, folks.

So...

Monday, 5:45, Rochester, Radiation Oncology Dept. Be there or be square.

Is it possible...?

2006-08-21T11:08:00.000-05:00

...To hang on through sheer bloody-mindedness?

Someone e-mailed me this quote today, it made me laugh:

A positive attitude may not solve all your problems, but it will annoy enough people to make it worth the effort.

I think I was that annoying person until the recent bombshell. I want to get back to that place, if only to be annoying again. I think finding out that you have an 11cm tumor in your liver is grounds for a brief nervous breakdown, so I'll allow myself that. But it is SO time to move on from that and concentrate on getting past this (albeit gargantuan) hump in the road.

Was I giving up before? Is that what losing hope is? Is acceptance giving up, or is it acknowledging the worst and then finding a way to deal with it?

Forget introspection, it's too emotionally tiring. I'm sick of being scared too, it feels too passive. I'm going back to blatent mockery. Look out melanoma, you're about to be either ignored, or laughed into extinction.

The above will be the last thing melanoma will see as I kill it with fire.

Enough of the navel-gazing and introspection already!

2006-08-21T09:17:00.000-05:00

It's a beautiful day!

The sky is blue, it's cool and clear, the best sort of day.

I've been focusing on the negative for a while and I'm tired of it. I start treatment next Monday and this might be the last time I feel well for a while, so I think I'm going to make the most of it.

Things to be grateful for:

My children are happy and healthy.

My husband loves me.

I have a roof over my head and a full stomach.

In spite of the Mother Of All Liver Tumors growing inside me (or MOALT), I still feel relatively well and have good energy levels.

I have a treatment planned that WILL work - or at least stabilise me (I have to believe that).

I live in a nice semi-rural area, with lots of trees and fields and excellent schools for my children.

School starts back soon and I am grateful that I have made the decision not to homeschool this year like I had planned, because I feel like they need to be in school with their own lives and be away from me and cancer for a while.

I am grateful for every second of life and don't want to waste any of it.

One week until treatment... It can't come soon enough for me.

Ignore my last two posts...

2006-08-20T11:51:00.000-05:00

I'm sick of myself and feel like I'm going round in circles.

Word.

But I also feel like I might be getting somewhere... Remember how I said it's a process? I guess that sometimes you have to go around a few times in order to see all of the scenery.

I'm aware that I probably seem to contradict myself at times. But you have to understand, cancer is a seething mass of contradictory emotions. It really isn't black and white - well except for the "it sucks" part. I think we can all agree on that.

The funny thing is, I don't always realise how I'm feeling until I write about it. I often read back what I've just written and think, holy cow, where did THAT come from??

I can promise you this though; it's utterly real.

Thanks for keeping me company while I try to find my way...

Acceptance?

2006-08-20T09:40:00.000-05:00

We must learn to let go of the life that we had planned in order to accept the life that is waiting for us.

I think that's where I'm headed.

I was thinking about the five stages of grief this morning. Because when you're given a cancer diagnosis, there is a very similar process going on within you. You are quite simply grieving for yourself, for the person you're never going to be again. I think it's only once you gain acceptance that you finally realise the person you have become because of the disease.

Denial (this isn't happening to me!)

Anger (why is this happening to me?)

Bargaining (I promise I'll be a better person if... please God)

Depression (I don't care anymore - or in my case, melanoma can kiss my ass)

Acceptance (I'm ready for whatever comes)

Denial for me would have been the time between my WEB/SNB and finding out that there was lymph node involvement after all, that period of time between making the jump from stage II to stage III.

Anger came straight after my diagnosis and kept putting in an appearance at different stages, almost punctuating my emotions.

Bargaining... heh... Stage III was filled with passive depression and bargaining with God to just let me be one of the lucky ones.

Depression has been a constant companion on this journey. As we know, cancer patients are three times more likely to experience depression than anyone else. My depression was interspersed with periods of almost euphoric optimism.

Acceptance... I'm at the point now where I am beginning to understand that no matter how much I rail at the injustice, the horror of me having cancer, it's not going to make any difference. I think I might finally be reaching acceptance, which is not to be confused with resignation. I will never be resigned to this. EVER. I will fight until my last breath. But I think acceptance will bring with it much-needed peace.

I think that in order to focus on the fight I need to let go of everything else, because the fear and the worry feels like it's going to kill me.

They say "Let go and let God".

I'm not quite there yet, as God and I aren't communicating too well right now, but I DO realise that the best I can do is to prepare for the worst and then, secure in the knowledge that I have done so, just let go and get on with the business of fighting back.

Just tell me how, as a mother, you can ever let go of worrying about your children.

That's the hardest part of all this.

Looking Forward

2006-08-20T08:51:00.000-05:00

We're heading into my favorite time of year - Fall!

I love everything about it; the shorter days, the crisp mornings, the smell of woodsmoke, the colors in the trees...

Even though I'll be having treatments, I intend to enjoy the season to the fullest. It could very well be my last one.

As we head into Hallowe'en, then Thanksgiving, then Christmas, I want to savor every moment, no matter how tired or ill I might feel from the treatments.

This is IT for me. The Last Chance Saloon.

People say things like "life isn't a dress rehersal" and such... but in a way it is. You almost always get a second chance. But from where I'm sitting, there might not be too many more chances to make it count, so I'd better start doing so right now.

This liver tumor is very fast growing, in the last few days alone, I'm starting to have pain from it. I'm so very scared. What if it doesn't respond to the radiation? I know that I'm planning to do IL-2 at some point after the radiation, but what if this thing gets so big in the meantime that it kills me?

I'm scared that death is closer than I think.

I'm sorry to be so depressing, but at this point in my life, all I have left is honesty and I'm laying myself open here. I think it would be wrong of me to pretend to be positive and happy when I'm not. Who would that benefit?

Hopefully this treatment will work and in a few weeks I'll be posting again about hope and someone reading this will find out that, even though the bad times feel like they're going to crush us, it passes.

Having said all that, I don't want anyone to look at me and think that my lack of cheerfulness and positivity stems from weakness. It doesn't. It stems from realism. It stems from knowing the truth of my situation. I'm down to the nitty gritty and fighting tooth and nail, false positive be damned.

And cancer be damned.

I think I have just come to the realisation that I can't do any more than what I'm doing and now we just have to pray that something works.

In the meantime, I plan on enjoying my children and enjoying Fall. I won't let cancer take that away from me.

I can't get my head around the whole God thing lately.

2006-08-18T06:46:00.000-05:00

Cancer challenges every belief you ever had.

It shakes your faith to the very core. Your faith in a higher power, your faith in your own body, your faith in friends and family, your faith in the medical profession at times too.

When I was first diagnosed, I was angry at God. I ranted and raved at him and demanded to know Why? Why had he smited me with this horrible disease? What had I done to deserve it?

I slowly came to the realisation that God didn't give me cancer. I started to think that maybe he'd guided my life so that when this happened, I'd be in the very best place to deal with it and get the very best treatment.

That faith stayed with me until my stage IV diagnosis, when I realised that it's utter bull. I had a doctor who'd taken a too casual approach to my situation, who'd brushed it aside, telling me that I was going to be fine and to go and live my life and they'd continue to screen me with their excellent follow-up. What a joke that turned out to be.

Stage IV opened my eyes about a lot of things.

So do I still believe?

I don't know.

I want to say yes, but as things stand now, just about the only things I have any faith in are my own backbone and the love of my husband and children. Everything else has been turned completely upside down and inside out. Those are my only constants.

I sometimes write on here about things I see other people say on one of my boards. That I do so is no reflection on them, it's more a case of what they said triggering my own thoughts and compelling me to write them down here.

Yesterday I read, the words, "We have a strong faith and he's not afraid to die..." It gave me pause for thought.

Let me preface my following statement by saying that I'm very happy for anyone who has that sort of faith, it must be so comforting.

But I just can't do it anymore.

See, I AM afraid to die.

Not only am I deathly (hmm possibly a bad choice of word) afraid of the end stage of my illness and what it's going to be like, but I'm terrified of the utter devastation that I will leave behind. Four devastated children and one devastated husband. I'm sorry, but to do that to them is beyond cruel. How can there be a God? How can this happen?

I think deep down I still believe, my faith has just been shaken more than at any time in my life.

I can't even say that it's something I'm struggling with. Cancer is struggle enough. I'm fighting to stay alive and it feels like I'm on my own. I want there to be a God. I still pray and I try to reach out to him, but I think he went on vacation, because he's not returning my calls.

Maybe I should try the other guy...

At the end of the day though, it probably just doesn't matter. You come into this world alone and naked and that's the way you're going to leave. If there's a Heaven, then I think I lived my life well enough within God's guidelines that I'll make it in. If there isn't and everything just ends when I take my last breath, then I won't know any different, will I?

I just hope that God doesn't desert my children and leave them stranded like he did me.

I was thinking the other day about the power of prayer, something which I have no trouble still believing in. Is it really about God, or is it due to the power of the human mind?

I don't know the answer to that, but I DO know that I feel the love and concern of all those praying for me and, maybe because that makes me feel less alone in all this, it really helps.

How can I put this delicately...?

2006-08-17T07:37:00.000-05:00

Chemotherapy has messed up my ... feminine functions...

I was under the impression that it would make me infertile and stop my periods. On the contrary, it made them closer together, heavier and about 100 times more unpleasant. Not going to go into the gritty details, suffice to say, Aunt Flo literally makes me sick.

Oh, and there ain't enough Midol in the world.

I remember the time Jim and I were in the grocery store, it was during the darkest days of chemo and I was looking at the herb teas for something to settle my stomach. He points one out "Oh look, there's one for PMS - NOT that you need it sweetheart!" he told me, giving me a big hug.

I had to laugh.

But seriously, this is just another thing that chemotherapy made more challenging. I'm glad that it seems to be a long way away in my distant future now. I hated it.

A couple of brain farts while I gather my wits...

2006-08-15T16:48:00.000-05:00

Today went well, but I'm feeling completely mentally and emotionally exhausted, I didn't realise before quite how worried I was about how long it was taking to get treatment set up.

Anyway, a couple of incidents from yesterday that I forgot to add to give you a laugh at our expense:

We got to park right out front of the cancer center, we sat there for a while because we were early, finishing our coffee and talking crap (as we do). I realised that people were parking and going inside, returning a few minutes later with a slip that they put on their dashboard, then going back inside.

"I think we have to get a parking permit." I tell Jim.

"I'll go in and get it." and off he goes.

He came back laughing his butt off.

Radiation oncology shares a reception area with an eye clinic for some odd reason. He went in and up to the desk, telling the receptionist that we had an appointment with Dr Xxxx.

"This is the eye clinic," she tells him, pointing to a large sign on the desk, "You need the next desk along."

He started laughing, "Maybe I need an appointment with the eye clinc." he tells her.

She was still laughing when we went back in.

We were sitting in the examination room waiting for my nurse to come in and talk to us about the treatment (after the doctor had done his thing). We kept hearing this mechanical, whirring noise... SHOOOM...

"I think that's the radiation machine." I say to Jim.

"Really? It must be right below us, or in the next room."

"It's LOUD!" I'm nervous.

"Ask the nurse." Mr Helpful suggests.

She came in and asked me if I had any questions, so I asked her about the noise and if it was the machine. Bless her heart, she tried really hard not to laugh at me.

"No, it's the elevator."

I cracked up and so did she. It took a minute to get over that. I think they're used to stupid/nervous people...

You see some sights sitting in waiting rooms.

This one woman plonked herself down next to me today and noisily opened her newspaper. She proceeded to comment loudly to her companion on everything she read.

"Man arrested for scalding kittens." she yells.

"I don't want to hear that." I say to Jim, because I was a bit stressed and just didn't want to hear depressing news.

The woman repeats it... louder. She must have heard me.

"I'm not listening. Lalalala!" says me.

She continues reading the article out loud.

"Man arrested for killing patient in waiting room." Jim says in a normal, the whole world can hear him voice.

I crack up. People around us were smiling.

Loud, obnoxious woman shuts up.

Grant me the serenity to accept the things I cannot change, the courage to change the things I cannot accept, and the wisdom to hide the bodies of those people I had to kill today because they pissed me off.

I wasn't trying to be mean, and I can't help it if Jim's irreverent brand of humor appeals to my warped little alter ego.

But someone please tell me why, when you go somewhere and find a seat far from everyone else, someone will always come and sit right on top of you. There could be a hundred other seats and they will sit almost in your lap.

Take off and nuke it from orbit - it's the only way to be sure.

2006-08-14T19:29:00.000-05:00

That's the plan.

Tomorrow I go for imaging that will enable my radiation oncologist to plan a course of treatment for me. Due to the size of my large liver tumor, I'm not a candidate for Novalis as I had hoped, so we're doing Three Dimensional Conformal Radiation Therapy instead. It isn't quite as accurate as Novalis, which means that surrounding tissue stands to be radiated, so be prepared for lots of gastric issues posts in the near future, heh. The fact that we don't have pinpoint accuracy means that the prescribed dose of radiation will have to be given in increments over a two or three week period, five days a week.

Hopefully it will address the issue of the monster inside me.

My three other liver tumors can be treated with Novalis, but the radiation oncologist recommended a systemic treatment of Interleukin-2 (IL-2) before taking any further action, which I agree with. With any luck IL-2 will boost my immune system to fight off any further metastisis and we all like the idea of lightening my tumor burden beforehand a LOT. (Me most of all!)

The best part of today is that all of the healthcare professionals I came into contact with agree that melanoma can be managed and treated like a chronic illness if you can get on top of it and stay there. Of course, we all know how easy THAT is (bad attempt at humor)... Still, it was encouraging. What was more encouraging was that the doctor looked me in the eye and was completely straight with me. See, I know how bad it is, I don't need people pretending it isn't.

Some validation here please, people.

I couldn't end this post without saying a big thanks to my Arfcom 'family' for the encouragement, support and outright kindness they show me. It's very humbling and completely heartwarming knowing that there are so many fantastic people pulling for you. I don't even have words to express my gratitude and appreciation (but thought they'd appreciate the nuke it from orbit part).

What does a girl have to do to feel like a cancer patient around here?

2006-08-14T18:16:00.000-05:00

So Jim and I were driving along the NYS thruway today, there were a LOT of trailer trucks, which we passed because he was speeding. He used to drive trailer trucks and still uses a CB radio when he's driving long trips on his own, he says it's like an old-fashioned form of Internet in that you can listen to poeple's conversations just like you can lurk and read posts on a message board.

But do you KNOW what truck drivers are saying to each other??

They're talking about us.

He said they're probably radio-ing ahead and telling the trucks we were coming up on to look down at my boobs. He puts on this stupid pseudo-redneck accent and starts in; "I'd like to be the shoulder harness in that green pickup truck." and "Check out the seat cushion in that green truck." and even, "The redhead in the green truck just lifted her top for me!"

I was mortified and grabbed his jacket, covering myself and my merciless husband tells me, "Now they'll just think you're naked under it. Don't cover up, don't deny them that, baby."

He can be such an ass. But I had to laugh, mainly because he found himself so funny.

But it was more than that. Because we were on the way to meet with a radiation oncologist and the fact that we could laugh at all felt so freaking good.

Have I mentioned yet how much I love that man?

It's a stupid story - of the 'you really had to be there' sort, but I wanted to share that because my blog seems to have been a bit devoid of humor lately, which isn't a reflection on our life at all. We make each other laugh all the time, even in the most awful of situations.

The way I see it, if you can go through all this utter crap and still keep a sense of humor, you're not doing so bad.

Melanoma; the gift that keeps on giving.

2006-08-13T20:17:00.000-05:00

Someone once wrote that having cancer was like being given a gift. It was a chance for them to put things right in their relationships, a wake up call of sorts.

I'm not sure if I completely agree with that, because no matter how you want to look at it, cancer wasn't any sort of gift or wake up call for me. It was the worst thing in the world that could ever possibly happen.

For me it's like this:

Cancer is going to take me away from the people who need me the most.

BUT...

Having late stage cancer has given me a chance to leave things right for my family. I wouldn't have that if I was in a car wreck tomorrow. It has allowed me to shrug off the petty and unimportant and focus on what matters. It has given me the freedom to step out from beneath people's expectations of me and be the person I really want to be. To behave how I really want to behave, feel how I want to feel, live how I want to live. It has given me the impetus to cut toxic people out of my life ruthlessly and with finality. I now face each new situation with the thought, "If this was my last day, if this is the last thing I were to do, how do I want to be remembered by the people who are important to me?"

I already know the answer to that.

When I was diagnosed with stage IV cancer, I thought hard about it and came to this realisation; If I don't survive this, I want to have lived my last time on this earth with dignity and grace and strength. I want my children to look back on my illness and passing and remember that I was brave and giving and infinitely loving right up until the final moment.

You see, in order to be able to fight, I think you have to acknowledge the possible ending. I'm beginning to work on letters for my family, I want them to cover every possible event that I might not be here for. My daughters' first date, their graduation, their wedding, their first baby... My baby's first little league game, his first boyscout meeting, seeing the little boy he's going to become, who I only get small glimpses of now, then the man. I live with the knowledge that I probably won't be here for any of that. So I'm writing my letters, which is hard to do.

But it's not giving up, far from it. Knowing that I have everything in order, that my children will still have my touch, my guidance from beyond the grave, that Jim will still have my partnership and advice, enables me to let go of that worry a little bit, it looses the grip of the paralysing terror enough that I can breathe just a little. It's like anything in life, in order to survive, you have to take care of business.

False hope rings hollow.

I believe that true positivity lies in realistically knowing how bad it is and how bad it can be, but doing it anyway. It lies in having the backbone to give cancer the finger, even when you're on the ropes and bleeding. It lies in looking fear square in the face and not being the first to drop your gaze.

And it lies in having the courage to still BELIEVE in spite of it all!

This is a learn as you go experience for me and I learned a few things about myself this past couple of days. One thing that never ceases to amaze me about the human spirit is how resilient it is. Just when you think you're not going to be able to bounce back, somehow you dig down deep into your soul and you find the strength to get back on your feet and back in the fight.

You have to know... you're amazing.

Don't get me wrong here, it's not that I'm expecting to die, quite the opposite in fact, I'm expecting to live!

Stay strong!

Scars are sexy!

2006-08-13T10:31:00.000-05:00

Or so they say.

In some cases, a scar can be a battle wound, the sign of a warrior. That's sort of how I view my scars... not that I think of myself as any sort of warrior, not like I view the soldiers who protect our freedom. Mine is a different sort of war, an intensely personal one and not for the greater good, I make no sacrifices other than sacrificing my comfort in order to gain more time with my family. But my scars are gained in battle nonetheless.

Wanna see? (I'm linking to them so that people aren't forced to look at them, I don't want to make anyone queasy here.)

Wide Excision Biopsy

Wide Excision Biopsy Part Deux

Lymph Node Dissection (a bit revealing, but not sexy)

Lymph Node Dissection Part deux

The pictures are quite personal, but I want to show what cancer can do to your body. Someone posted on MPIP recently about an education program they want to do where they show teenagers the effect that skin cancer can have on one's looks. That fake'n'bake might look pretty, but the consecquences certainly don't. If you must tan, be sensible about it. Melanoma is on the rise and it's a killer.

Lecture over.

Speaking about the fake'n'bake... I have a confession, sort of.

Our local Subway is next door but one to a tanning salon. One evening, at the height of chemo when I was feeling like something the dog didn't even want to roll in, Jim and I went there to grab some subs for the family.

I was sitting waiting for him to get the food when a young woman came in. She had on shorts and had a spectacular tan, she looked amazing. I sat, feeling pale, ugly and half dead (I also had a chest infection for about two months during chemos one and two), looking at her legs. I noticed a small black mark on her leg and it struck me that it looked exactly like the mole I had that became a melanoma.

I wanted to say something, but at that point, started coughing up plegm and trying to suppress the dry heaving that always happened whenever I coughed. Jim got the subs and helped me back to the car. I mentioned the woman's leg to him and he asked me if I wanted to go back and say something to her. I said no, because I just felt so sick, dry heaving saliva and plegm into a wad of Kleenex (nice visual, huh?).

I've regretted it ever since.

Oh, I know about free will, we're all perfectly free to damage our own health if we want to. Smokers know about lung cancer and emphysema, drinkers know about cirrhosis, etc (God knows I've never been a paragon of virtue myself)... but do tanners realise the dangers of skin cancer? Should I have just said something regardless of how I was feeling? Even if there was a good chance that she'd tell me to eff off and mind my own business? I think so... I think I did the wrong thing.

No need to judge me on that, I've already judged myself pretty harshly.

This poses the question though; how far do you go in trying to save people from themselves? How much is it appropriate to say to a complete stranger about the risk they're posing to their own health? Would I approach a person lighting a cigarette and tell them that they're possibly giving them self cancer? Would I approach someone opening a bottle of beer and tell them that alcohol is now classed as a carcinogen?

Where is the line and should we cross it?

Seeing my scars for the first time freaked me out. The first time I saw the wide excision biopsy scar I started to cry, it looked so horrible and my leg had a large chunk missing out of it that you can't see from the angle the picture was taken. I was better prepared for the lymph node dissection one and had to care for the wound, so it was easier to deal with.

The resulting (although mild) lymphedema in my thigh means that I no longer wear shorts or short skirts. A small price to pay for cutting the cancer out of me. Even though the lymph node dissection didn't halt or slow the progression of the disease, I feel that in the circumstances if I hadn't had it done I'd be blaming myself a lot more now than I already do.

Sadly I believe that the cancer had already spread and my oncologist dropped the ball by not doing a baseline scan before the LND surgery to be sure (and maybe I dropped the ball because I didn't know to ask for one). He dropped the ball in quite a few ways, however, I strongly believe that had I stayed with him, he would have killed me. I hope to God it's now not too late to save me.

If this doesn't work for me, it won't be through a lack of trying.

Live STRONG! It's the only way. I lost my grip for a couple of days there and it's not a good thing, it just makes it all so much harder. You have to realise that even though you can't control the cancer, you CAN control your attitude towards it. You have a choice; curl up and die, or fight like you've never fought before.

Me? I'd walk over hot coals - or worse - to keep my children from being motherless.

So... the self-pity party is OV-ER. Time to pull myself up by the bootstraps and carry on.

Fear Paralyses

2006-08-11T19:29:00.000-05:00

And that's what cancer wants. If you're paralysed with fear, you cannot fight back. You become a victim. The way I look at it, I may be a cancer patient, but I am not any sort of victim.

So yesterday was a bad day. I got through with the help of some pretty amazing people. There's nothing to be gained from dwelling on it... Like an old friend always says to me when things get crappy "sometimes you just have to accept that it's shit and move on".

To those who encouraged and supported me on here, on MPIP and in e-mail, I say a heartfelt thank you. I'm still having a lot of pain in my arms and neck, so can't type for very long, hopefully I'll be able to respond to the rest of my e-mail tomorrow.

I took the Lortab last night, it still hurt, I just didn't care. Then I threw up half the day today... narcotics and I don't make a good mixture.

Probably just as well...

I lost count of how many times I said "I" in this post.... it's all about me, I guess and I'm getting pretty tired of it.

Tomorrow I'll try to have something profound and insightful to say.

Maybe.

Some cheese with your whine, madam?

2006-08-10T14:05:00.000-05:00

The icing on today's cake is that I've hurt myself. It's my neck and shoulders and the pain goes right down my arms. I couldn't sleep last night it was so bad, I even considered taking the dreaded Lortab left over from surgery. Jim tried to take me to the ER, but I resisted, scared that they would do a neck CT and find a tumor.

There, it's finally out in the open. I'm a big old scaredy cat.

Perhaps I scrubbed the bathtub too hard yesterday, that's it then, no more cleaning for me!!

I don't mean to whine, really I don't. It's just a bit of a bad day, that's all. It's not all plain sailing. Sometimes cancer just sucks.

Ignorance is bliss

2006-08-10T12:24:00.000-05:00

There is so much truth to that.

A few hours ago, I was still in blissful ignorance about the severity of my condition. Until we picked up the new copy of my scan CD to replace the one the new cancer center lost. Jim opened it and read the report. It's not good. My largest liver tumor is in the left lobe and measures (according to them) 11.2 cm and is pressing significantly on the inferior vena cava, there are two others at about 1 cm or so.

Needless to say I'm in shock. I had no idea that things were so bad.

I feel like I've completely been kept in the dark about this. Of course I asked questions, but never really got a straight answer, which is partially what lead to the current path that I am walking.

At this point, my hope and positivity have left the building. They may be back. This may just be the shock talking.

We spoke with the radiation oncologist a little while ago and he thinks that the large liver met is too big for SRS, but that there may be other options, we meet with him on Monday so that he can review my scans and discuss options with us. I also set the wheels in motion with Roswell Park for a third opinion and to discuss IL-2 with them.

Perhaps an oncology radiologist will be able to shed better light on things for us.

There has to be a way to get this thing out of me, it's very big, but I don't have multiple organ involvement (that I know of), this is my only life-threatening tumor at this point. I need to explore further. NIH and NCI are my next stop... surely by being aggressive and thinking outside the box I can buy myself some time...?

As of now the questions in my mind read like this:

Why wasn't I told exactly how big my tumors are?

How was I allowed to get to this point? (one for my attorney to ask, perhaps)

Can we radiate to shrink the tumor then resect?

Can we radiate to shrink the tumor then do SRS?

Can we de-bulk the tumor then do IL-2?

Can we de-bulk the tumor and do a chemo bath?

Or how about arterial perfusion?

There HAS to be something we can do. Time to hit the phone and find someone who will think outside the box with me.

Huh, looks like hope and positivity had just stepped out for a minute rather than left for good.

Hope... a truly human affliction.

Stupid people piss me off

2006-08-09T15:14:00.000-05:00

That is all.

Okay, so actually it's not. The new oncologist's office has mislaid my disk with my scans on that they were supposed to be sending to radiation oncology on Friday. I was supposed to hear back by yesterday (Tuesday) as to whether or not I could have SRS (stereotactic radiosurgery) on my liver mets. So when I didn't hear, I called today. I wish I had called yesterday or Monday like I usually would have, but I mistakenly assumed that the people I was dealing with knew what they were doing. Big mistake and one I won't be making again. So Now I'll get a call from the radiation onc tomorrow as to whether he'll see me if I bring my disk with me, rather than viewing the disk first in order to save wasting both of our time if it turns out it can't be done.

GAAAAAAHHHHH!!!!!

The good thing that came out of this is that I was so pissed and frustrated that I scrubbed my bathroom from floor to ceiling.

Mmmmmm! Lime fresh!!!

What Would Clint Eastwood Do?

2006-08-08T14:03:00.000-05:00

I'm pretty sure that everyone who's ever been touched by cancer can relate to the sleepless nights. Last night was one of them. It's like you can hold everything together until the wee hours of the morning, and then the boogeyman comes out to play. You spend the rest of the night laying almost rigid with fear, finally falling back to sleep as it begins to get light outside.

One observation of a habitual insomniac is that there's some really weird crap on TV at that time of night. The infomercials are best. But it gets a bit sad when you find yourself singing along to that 70's greatest soul collection CD and you know every word and which song is on next.

You seriously consider buying it.

So last night I was laying there just staring at JIm, watching him sleep. It must have freaked him out because he woke up and looked straight at me, I asked him "can you sleep?" and bless him, he said no he couldn't. He stayed awake, cuddling me until I fell back to sleep. Sometimes you just need a cuddle to keep the monsters at bay.

Waited all day for a phone call from the radiation oncologist as to whether or not she thinks I'll be a candidate for having these liver mets zapped with stereotactic radiosurgery. I guess I'll call tomorrow and follow up on that, there's no time to dick around on this.

This game's already gone into overtime. Not to feel sorry for myself, but potentially time is not something I have a lot of, so it makes sense to be proactive and make every minute count.

Gotta be keepin' it real. Yo.

Bread is the new beer

2006-08-07T11:46:00.000-05:00

Seriously. This blinding realisation came to me yesterday as I was stuffing my face with the better half of a baguette slathered with butter. See, I used to really enjoy a cold beer or three, or a nice glass of red wine of an evening. But since my liver grew tumors, that's all stopped. First because I just didn't feel well (yeah, I know, call the whaaaaaambulance), and then because alcohol and chemo don't go too well. But finally, I have come to the realisation that beer and I have to part company forever because a couple of weeks ago, when I was celebrating my "stable" status and end of chemo (the first end of chemo that is, this now is the REAL end of chemo - confused? you will be), I had a glass of wine. The next day I felt like crap. I guess tumors in your liver make booze harder for your body to handle... seems like a no-brainer, you say? Well yah, but remember that my brain is all fogged up from the good drugs and there you have it.

This post was brought to you by your friendly neighborhood, garden-variety whiny beotch.

Holy Guaca-mole!!

2006-08-07T08:12:00.001-05:00

What Cancer Cannot Do

Cancer is so limited...

It cannot cripple Love

It cannot shatter Hope

It cannot corrode Faith

It cannot destroy Peace

It cannot kill friendship

It cannot suppress Memories

It cannot silence COURAGE

It cannot invade the Soul

It cannot steal Eternal Life

It cannot conquer the Spirit

That was in the back of the binder my new oncologist gave me to bring to all my appointments. I've seen it before, but that night, when we got home from Rochester and I read through all the information they had provided, turning the page and seeing those words made me cry - in a totally good way. They want that to be the last thing you see when your head is reeling with information and you're agonising over decisions, or waiting to hear if you're a candidate for treatments you want.

It occurs to me that cancer can actually do some of those things - if you let it. During this journey there have been times when it has beaten down my faith, robbed me of peace, shattered my hopes, invaded my soul and conquered my spirit. But that was all temporary and something to be overcome. As you go along this road, you realise that in order to survive, you can't let it do any of these things. This whole thing is a process - this is as real as it gets, people!

My summer loves

2006-08-07T08:12:00.000-05:00

My daughters at the beach.

Chemo Whores of the world unite!

2006-08-06T13:26:00.000-05:00

The image above, entitled "Chemotherapy", really struck a nerve with me. The first night I had chemo, I sat with the pill in my hand, my big glass of water at the ready, feeling as though I was holding a loaded gun to my head. It took a lot to force myself to put the pill in my mouth and swallow it.

What didn't help were the warnings that accompanied the medication; "TEMODAR Capsules should not be opened or chewed. If capsules are accidentally opened or damaged, rigorous precautions should be taken with the capsule contents to avoid inhalation or contact with the skin or mucous membranes." I wondered what the Hell was in them to carry such a warning and I was about to put this substance inside my BODY??

Research (or an hour or so on Google) taught me that Temodar metabolises to a completely different substance inside the body. Yet another instance for me where knowledge gave me comfort, which happens more often than not.

So I took the chemo, after dutifully taking my Zofran an hour before and went to bed. I woke up in the morning and lay very still, as if moving would bring on dreadful side effects. After a while I realised that I was fine.

So much for that drama.

As I wrote in my first post, I was ill though, after the first chemo. I don't want to harp on about the negative, but I don't want to make it seem easier than it was. A lot of my illness was tumor-related, which went away after a while as the spleen nodule started responding to the drug. I was also getting severe bruising at that time, which also eased after about the second cycle of Temodar.

I've just finished my fourth and last cycle of Temodar, because it isn't working for me, although it HAS kept me somewhat stable. This time the worst side effect for me was burning, itchy feet and let's not forget the delights of chemo-induced constipation. Can you say concrete guts? It takes nothing short of a stick of dynamite shoved up your jacksy to move that baby.

Something funny about chemo though (yes, it is possible to find humor in even that), is the brain fog. It robs you of your ability to think, to make decisions, to remember what you were saying mid-conversation, to think of a word you want to use... worse of all, it robs you - temporarily - of your personality. Seriously, they might as well have sat me in the corner and left me to drool - they may have even done it and I just don't remember. That was a joke. Sort of.

Still... it was a good excuse for the occasional brain fart... I have no idea what my excuse is going to be now that I've finished chemo...

Reminds me of a T-shirt I once saw (can't remember where - OBviously); "I'm on chemo, what's YOUR excuse?"

You can write what you want in your blog, because nobody ever reads it anyway

2006-08-06T12:46:00.000-05:00

People keep telling me that I'm being incrediby strong and that I'm an inspiration. I feel like a bit of a fraud, because I'm really not that strong, all I'm doing is taking things a day at a time and trying to keep a positive outlook.

I posted something on Arfcom earlier today that gave me pause and I realised that it belonged in my blog that nobody ever reads.

It occurred to me the other day that a few years ago, if you'd told me that I'd have stage IV cancer and be treating it matter-of-factly and with calm practicality, I'd have laughed at you, there's no way I could have forseen myself being able to handle it. But when it happens, it just becomes your reality and you have no choice but to deal with it and it's amazing because it actually starts feeling normal to you. Sometimes I forget and start talking about it to my husband and when I look at him he's almost in tears and then I realise that it's easy for me to say certain things, because I'm in the fight, it's not so easy for other people to hear them. I need to work on that.

My erstwhile mother called me the other day out of the blue... she can't handle it at all. She said she can't imagine what it must feel like. I told her it's like the boogeyman, that monster you're so terrified of that lives in your closet suddenly jumping out of the closet and grabbing you. And then, like in a nightmare, you can't run away, your feet won't move and the only thing you can do is turn and face it and fight like Hell. I told her that in my case, I have the boogeyman by the nuts and am looking him in the eye and telling him "you're going down!".

Stage II to stage IV, or leaping tall buildings in a single bound

2006-08-06T10:16:00.000-05:00

Okay, so January 2005 - April 2006 in a nutshell, or a synopsis of the boring timeline/details:

The early days of having melanoma were very confusing. Dealing with all the emotions that come along with a cancer diagnosis on top of having a baby was extremely difficult. Two weeks after my diagnosis, my surgeon performed a wide excision biopsy and sentinel node biopsy. Two weeks later, the results were in, the sentinel nodes were clear, I was at stage II.

I was so relieved. I felt like I'd dodged a bullet. The feeling lasted a few months until, at the end of April, my oncologist called and told me that after further testing, one node had micrometastisis. He asked me if I wanted to go back into the study which had led to the discovery of the miniscule cancer cell in my lymph node. Half of the people in the study would have surgery to remove the remaining nodes in the area (in my case, the groin) and half would have observation.

I agreed and was randomised for surgery. On May 6th 2005 I had 32 nodes removed from my groin. The recovery was hard, I seemed to heal really slowly and developed lymphedema in my right thigh. The nodes came back clear and my doctor told me that I had about a 70% chance of no recurrence.

After all this, I was thrown into a turmoil. I was so terrified and became obsessed with the thought that I might die. I struggled with depression. I tried to research melanoma, but every time I tried, I became even more scared. The more I learned, the more awful it seemed.

I felt as though I had no control over what was happening to me. Other cancers have adjuvant treatments for stage III patients, melanoma doesn't really have anything effective. I asked my oncologist about interferon and he told me that the benefits were so small that he didn't consider it worth putting me through such a brutal regimen. I felt powerless, in limbo, like all I could do was wait and see if I was going to recurr. It's like living with a ticking time bomb inside you only you can't see the countdown.

As it turned out, I didn't have long to wait. In March of 2006 I got what I thought was a stomach flu. Only I never got better from it. I started to experience sharp pains in my left side and around my back and just didnt feel well. Towards the end of April, the pains had got to the point where I couldn't stand it. I couldn't eat, was nauseous and didn't know what to do with myself.

Jim took me to the ER where they did a CT scan. The news wasn't good. Melanoma had metastisised to my liver and they saw a spot on my brain that they weren't sure what it was. A brain MRI determined that it was from a previous head trauma, thank God.

But I was now stage IV. That news was absolutely terrifying. Like nothing else I have ever experienced.

I waited a week to see my oncologist, who confirmed that I had several large tumors in my liver, too many to resect, and one smaller nodule in my spleen. At that point too, I had developed three small subcutaneous tumors that looked like little blue bb's under the skin.

My doctor decided to start me on Temodar, a relatively new chemotherapy drug, which is somewhat less toxic than other chemotherapies and could be taken at home in capsule form.

I just wanted to say that through all of this what helped me most was learning about my condition. If you're reading this and have recently been diagnosed with melanoma or have a loved one diagnosed with melanoma, or any other cancer, you need to do your research. Learn as much about it as you can. Knowledge is power. When you first start out doing web searches on it, you're going to feel overwhelmed and terrified, but, as you continue, you'll start to see a glimmer of something, hope maybe... I don't know. But I DO know that you start to realise that cancer doesn't have to automatically be a death sentence - even stage IV cancer.

Yes, a lot of people die from it. But a lot more survive. The statistics suck. I mean really, they blow hairy donkey balls... but what you have to remember is that many of them are outdated, based on past studies. They're not necessarily applicable for now, with recent advances in treatment and clinical trials available. Survival is going to increase and cancer is going to become a managable disease and one day, they will have that cure.

I just wanted to add too, that another thing which has helped me more than I can say in dealing with my stage IV diagnosis is this website Melanoma Patients Information Page there's an awful lot of information to be found there and the message board is full of very kind, extremely knowledgable people. It's been a great source of comfort, support and encouragement to me, as well as an awesome resource for information. Caregivers are welcome and often have a lot of knowledge and unique perspective to share.

I'll end this missive with the words of Gilda Radner, who sadly did not survive her battle with cancer:

"It's always something"

Stay strong!

Birth, death and everything in between...

2006-07-21T11:01:00.000-05:00

The story thus far, or where it all began.

December 21st 2004 and I had just given birth to the most beautiful, amazing 10 lb baby boy. Jamie. As they took him away to be checked, my midwife noticed a lump on my leg and asked me if I wanted her to remove it and send it to the lab. I agreed and it was done. I thought nothing more of it. I held my baby and was so unspeakably, blissfully happy - happier than I'd ever been in my life. My husband Jim was right there with me as we brought Jamie into the world, then set about getting to know our brand new son.

I was in the hospital for two days after and came home on December 23rd, just in time to have a wonderful Christmas with our three older children and our new baby. No sooner had I got home, though, than the phone rang. It was my OB's office asking me to come in. I thought she just wanted to check me over prior to the holiday or something and Jim and I wrapped the baby up snugly and drove over there.

We walked into the office, expecting everyone to oooh and aaaah over Jamie, after having been going there for my whole pregnancy. Nobody said a word. We thought it was strange, but were so wrapped up in each other and our happiness that we didn't pay it too much attention.

That was the last moment I was ever going to feel happy again.

I went into the examination room and my doctor came in. She wasted no time getting to the point. "The lump you had removed was cancer, either melanoma, or...." I can't remember the other thing she said because I was struggling not to pass out at that point. "Either way, it's not good." she finished.

I sat there and felt myself crumple. I started to cry. I looked at my baby and realised that there was a good chance I wasn't going to see him grow up.

"What about my kids?" I managed to sob, my first thought one of horror at the idea of leaving them. "Am I going to die?" was my second thought.

My doctor reassured me that they had caught it early and there was a good chance that I would be all right after treatment. She told me that she was arranging for me to see the best person in the area for what I had and told me to call after the holiday. Then she left.

Jim and I just sat and looked at each other in horror. I couldn't stop crying. He hugged me so tight and we sat there for quite a while until I decided that I wanted to get out of there. I barely made it into the car before breaking down again and we both cried for a long time. "I can't go home, I can't face my kids yet." I told him. So we decided to go and do some last minute shopping. Me just home from the hospital with my newborn baby and all.

We went to Toys R Us, where we bought some more baby supplies and Christmas toys for the kids, both of us by this time just completely numb. Two days before Christmas and we'd had the rug pulled out from under us in a spectactular way. Finally, we went home and I hugged my kids and nursed my baby and then just sat on the couch in shock, horrified and still unable to process the news I'd just been given.

Christmas Eve was a blur. Jim went off with David, our older son (now 16) to finish the Christmas shopping and I stayed home and focused on the baby and making the holiday special for my girls. At that point I didn't know if it would be my last Christmas with them and wanted them to have some incredible memories.

Christmas Day 2004 dawned and the kids had a wonderful day. Jamie had a smart new suit on...

I tried not to obsess about what was to come.......

The road less travelled.

2006-07-16T11:55:00.000-05:00

This is my first attempt at producing a page in which I want to write about my experiences in living with advanced Melanoma.

Right now I'm on a road that is being travelled by a few brave warriors, whose footsteps I tread in now. Some are gone, but many are still with us, still fighting. I think that the human spirit is something that is often underestimated. The human will to survive is phenomenal.

When you get cancer, they want to cut, poison and burn you, trying to 'cure' you. It's a testament to that human survival instinct that we let them do it. And we do it with stoicsim and determination... When I started doing chemo, it amazed me how much backbone it actually took to get through, not only the immediate side effects, but the weeks after when I felt like Hell. When I coud hardly care for my children because I felt so ill... After the first cycle, it got so bad that I started to think "Is this what it's going to be like from now on? Is this how my life is going to be until I die?"

Well it wasn't. I got better - just in time to start cycle #2. After #2, I had one good week before cycle #3... and then lo and behold, after #3, I just felt 'normal' (whatever that is anymore).

I have so much to say. I want this blog to reflect my thoughts and feelings as I travel this road and hopefully, someone out there will be touched by it and know that they're not alone. We are on this road and there are others right here beside us, walking in these same footsteps of those who went before.

So this post is just a 'hello'... In the next post, I'll start from the beginning and relive the journey. I've gotta tell you, that's going to be hard. But I think it will be worth it.

Until then, live strong.