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.

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.


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!

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*


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)!