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LIVING WITH MELANOMA

Someone asked me, after my diagnosis with Melanoma, "What is your prognosis?" I
told them, "It's still the same as yours, I'm going to die one day too." But not
today!!


FRIDAY, JANUARY 19, 2007


A LEAP OF FAITH


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.


posted by Heather at 8:55 AM 61 comments


FRIDAY, JANUARY 12, 2007


SO I'M JOINING THE RANKS OF THE MALL WALKERS...


...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!


posted by Heather at 8:20 AM 13 comments


FRIDAY, JANUARY 05, 2007


"IS THIS IT?"




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)!




posted by Heather at 8:39 AM 15 comments


SUNDAY, DECEMBER 31, 2006


THE BONFIRE OF MY VANITY.



I've been sick.

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

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

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

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



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

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

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

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

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

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



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

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

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

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

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

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

God, I sound pathetic!


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

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

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

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

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

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



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

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



So, how was everyone's Christmas?

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

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

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

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

My Love,

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

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

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

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

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

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

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

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

Happy New Year, everyone!

Wishing us all, Health, Happiness and Hope!


posted by Heather at 5:38 AM 14 comments


SATURDAY, DECEMBER 23, 2006


TIME TO PLAY THE GAME!!!


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!


posted by Heather at 6:02 AM 9 comments


FRIDAY, DECEMBER 15, 2006


THAT'S MRS DOOFUS TO YOU!


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

Jim and I went out on Saturday to take care of some stuff and have our
anniversary breakfast/lunch. I noticed that people were staring at him and
giving him odd looks (more so than usual). He noticed it too and we wondered
why... then I looked at him and realised that he was wearing a black 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!


posted by Heather at 7:08 AM 10 comments


SUNDAY, DECEMBER 10, 2006


WHAT DO I CARE 'BOUT THAT WINTER STORM?


I've got my love to keep me warm!



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

That evening I was told that I had cancer.

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

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

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



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

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

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

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



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

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

Not today.


posted by Heather at 2:34 PM 10 comments


TUESDAY, DECEMBER 05, 2006


LIFE IN THE SLOW LANE.


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

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

Anyway, I nailed it. No worries.

So how is SRS?

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

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

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

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

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

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

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

Dammit.

But maybe that's not realistic.


posted by Heather at 11:52 AM 7 comments


THURSDAY, NOVEMBER 30, 2006


WHEN YOU GET TO THE END OF YOUR ROPE, TIE A KNOT AND HANG ON.




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

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

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

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

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

So, seven more days.

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

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

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

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

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

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

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

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

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

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



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

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

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

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

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

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

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

And to finish, a favorite quote:

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


posted by Heather at 11:08 AM 6 comments


SATURDAY, NOVEMBER 25, 2006


ONE.


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!


posted by Heather at 11:04 AM 12 comments


ABOUT ME

Name: Heather Location: Buffalo, New York, United States

I'm a loving mother of four wonderful children aged from 23 months to 16 years.
I am living with stage IV Melanoma, fighting to squeeze every last ounce of time
out of life as I can.

View my complete profile


LINKS

 * Old School
 * AR15.com
 * Melanoma Patients Information Page
 * Chemocare.com
 * Memorial Sloan Kettering: About Herbs, Botanicals and Other Products
 * LiveStrong.org
 * National Cancer Institute
 * American Cancer Society
 * Operation Sunshield
 * More Links Coming Soon


PREVIOUS POSTS

 * A Leap Of Faith
 * So I'm joining the ranks of the mall walkers...
 * "Is This It?"
 * The bonfire of my vanity.
 * Time to play The Game!!!
 * That's MRS Doofus to you!
 * What do I care 'bout that winter storm?
 * Life in the slow lane.
 * When you get to the end of your rope, tie a knot a...
 * One.


ARCHIVES

 * July 2006
 * August 2006
 * September 2006
 * October 2006
 * November 2006
 * December 2006
 * January 2007



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