Tuesday, August 29, 2006

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

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!

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.

Monday, August 28, 2006

Let me see your war face!!

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.

Sunday, August 27, 2006

Melanoma is a big old poopy head.

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.


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

Monday, August 21, 2006

Is it possible...?

...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!

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.

Sunday, August 20, 2006

Ignore my last two posts...

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


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...


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

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.

Friday, August 18, 2006

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

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.

Thursday, August 17, 2006

How can I put this delicately...?

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.

Tuesday, August 15, 2006

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

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.

Monday, August 14, 2006

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

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?

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.

Sunday, August 13, 2006

Melanoma; the gift that keeps on giving.

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.


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!

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.

Friday, August 11, 2006

Fear Paralyses

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.


Thursday, August 10, 2006

Some cheese with your whine, madam?

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

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.

Wednesday, August 09, 2006

Stupid people piss me off

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.


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!!!

Tuesday, August 08, 2006

What Would Clint Eastwood Do?

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.

Monday, August 07, 2006

Bread is the new beer

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!!

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

My daughters at the beach.

Sunday, August 06, 2006

Chemo Whores of the world unite!

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?"