Friday, September 22, 2006

I've met the funniest people recently...

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

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

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

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

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

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

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

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

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

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

And it won't.

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


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

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


Tuesday, September 19, 2006

All I've got to say

I've never been so tired.

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

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

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

How can this disease happen to people?

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

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

I'll write more tomorrow.

Tuesday, September 12, 2006

In the home stretch!

I only have 3 more radiation treatments to go!

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


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

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

So... what to do next?

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

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

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

Monday, September 11, 2006

Never forgive. Never forget

Friday, September 08, 2006

TFI Friday!

What a week!

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

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

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

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

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

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


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

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

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

My fellow man was a different story. Heh.

Thursday, September 07, 2006

Okay... I'm done ranting.

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

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

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

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

I wonder what's next...?

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

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

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

Somebody call the Whaaaambulance.

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

You can't fix stupid.

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

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

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

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

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

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

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

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

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

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

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

Petty? Probably.

Oh well.

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

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

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

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

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

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

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

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

Just kidding.

Maybe today I'll get a nap.

Wednesday, September 06, 2006

Insert funny yet clever title here.

I'm tired folks.

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

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

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

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

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

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

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

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


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

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

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

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

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

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

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

I hope so.

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

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

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

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

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


Monday, September 04, 2006

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

I'm knackered.

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

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

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

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

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

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

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

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

I'm still working on that part.

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

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

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

Sunday, September 03, 2006

Tough times don't last. Tough people do.

I just like that saying.

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

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

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

And now we have the MOALT to deal with.

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

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

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

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

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

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

We went back to school shopping yesterday.


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

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


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

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

It feels good.

Saturday, September 02, 2006

I could get hit by a bus too.

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

Copyright Susan Frisius

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

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

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

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

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

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

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

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

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

Great! Now I caused my own cancer.

"You should simplify your life."

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Both of you will feel better when you take action.

Friday, September 01, 2006

Beware! Not for the easily offended!

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

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

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

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

It's fine.

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

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

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

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

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

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

I'm sorry about that.

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


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

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

It's utter bullshit.

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

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

Can you tell it pisses me off? (LOL)

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

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

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

To survive, of course.

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

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

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

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

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

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

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

The moment we begin to fear the opinions of others and hesitate to tell the truth that is in us, and from motives of policy are silent when we should speak, the divine floods of light and life no longer flow into our souls.