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Living with Melanoma



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



Last Build Date: Tue, 05 Dec 2017 09:56:58 +0000

 



A Leap Of Faith

Fri, 19 Jan 2007 13:55:00 +0000

It's yours, take it. Leap like a lunatic over the chasm below. Your true self awaits you, NOW you will know.I had a follow up-follow up appointment with my radiation oncologist on Tuesday morning to get the results of my CT scan from the week before, because he wanted to adjust my steroids if there was no bleeding in the brain.His nurse was even friendlier than usual towards me when I got there, which, having been here in this place of scanxiety before, made me wonder if they had bad news for me.The doctor came in seeming very excited and chipper and asked how I was feeling. I told him about the rib pain I'm having - probably from coughing (cold came back), and all the vomiting from before didn't help I'm sure. He decided to send me for a bone scan just to make sure there's nothing nasty lurking.Then he wheeled his stool over next to Jim and said, "I have the scan results from last week", he opened my file to the page and started showing Jim the results. I was a bit numb, because that's how mel gets you, you condition yourself to expect the worst. What the doctor was saying wasn't really sinking in with me even though I could hear the words.Here it is:As of November 1st 2006, I was told that I had three lesions in my brain, a 3.3cm, a 2.9cm and a 1.8cm, as well as vastly disseminate seeding of tiny lesions throughout my brain too small to measure.That's when they gave me the three month prognosis.As of the scan I had last week, the 3.3cm lesion has shrunk to 1.6cm, the 2.9cm one to 1.2cm and the 1.8cm one has shrunk down to being so small they can't measure it. Most of the seeding of tiny lesions throughout my brain is no longer visible.So those 22 days of WBR and further 8 days of reduced field therapy really paid off, even though it was hard at the time. While you're taking these treatments, it's a real leap of faith, if you like. Because you feel like hell and have no idea if it's even going to work, but you do it anyway.A leap of faith. Like when I was a child standing at the edge of the swimming pool, with my dad in the water telling me to jump in and that he'd catch me. So I jumped, as high and hard as I could, because I was a daddy's girl. And in that moment, that few seconds of freefall before my body hit the water, I experienced that same feeling of placing myself totally in someone else's hands, not really knowing if they'd be able to stop me falling, from going under.Just hoping.Right at the start of this whole brain episode, I decided to put myself completely in this doctor's hands and not second-guess him, which is quite alien to my nature. But upon that first meeting with him, when I was so sick and my survival was so questionable, he was the one who gave me that hope.Yes, he gave me a horrible prognosis. But then he started to tell me about what he thought he could do if we were aggressive enough. He told me about success stories he's had with patients in the past, he told me that he thought I had what it took to pull through this. Good strong oil and good strong water (that still makes me smile). He gave me that hope.And I jumped. Like that skinny little redheaded girl by the pool, I jumped. And the fall was endless, and I had no idea if anyone would be there to catch me, but I held on tight anyway. I kept the faith, held onto the hope, even though the odds looked so hopeless just a couple of short months ago. The fall was infinite.And then suddenly, this week, it was like hitting the water and feeling my dad's arms closing around me and hearing him laughing and saying, "Good girl!" And then lifting me onto his shoulders which always felt like the safest place in the world to me.The Doctor must be used to giving this sort of news, he included me in the conversation, but addressed himself to Jim, I think he could see my numbness and I think it was probably a completely normal reaction on my part. As he was talking, he'd keep looking at me and all I could say was, "Okay... okay..." I simply didn't know what to do with the news, which is better than we could have hoped to hear so early after the therapy.But [...]



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

Fri, 12 Jan 2007 13:20:00 +0000

...Actually I'm not. I think I exist only to irritate them as they stride past me as I limp along on my lymphedema(ic?) leg pushing the stroller, waaay too close to my body space for my liking, well practically barging me out of the way, if you like.I mean, yes, exercise is great, which is why Jamie and I plan to head off to the mall a couple of times a week for a slow crawl around, I need it for my bones as the 'roids lay waste to them (plus I could use trying to get rid of some of this extra 'roid weight). But why do you have to be mean about it? You should see it. These people take it very, very seriously. C'mon people, it's the crappy little local mall, you're taking a walk, not training for the London Marathon!Still it gives me some amusement, so I shouldn't complain. It's an aggressive sport people! NOT for the fainthearted.So we started our 'walks' on Monday. I honestly thought it would start making me feel better. I should have known better.We got home around 11am and I fed Jamie, took my meds and fed myself. Then I spent the rest of the day vomiting.I have to be honest here, I've been feeling sick for about a month, I guess. I touched on it in my last entry, but it had at that time got to the point where I couldn't take any more. I'd have "good" days and the 'roids caused me to push myself further than I should have. But the swelling just continued to increase and lasted for so long that I thought it was just a permanent side-effect of the drugs.After my CT scan, the swelling was even worse and I got diarreah that went on for days. I sort of expect that after all the contrast and the enema, so just lived with it. But by Monday, I was so sick that I wasn't able to keep my meds down and that's getting dangerous.I began to have seizure activity along with the vomiting, just like before when my brain lesions were found. I was so scared. Jim came home from work, took one look at me and called one of the doctors who told him to get me to the ER asap. So off we went.They did a brain CT, hydrated me, gave me IV Zofran and Decadron (the 'roid) and did bloodwork. I have some sort of gastric infection, which is what was making me swell, causing the diarreah, etc. My Dilantin (the med that controls seizures) levels were very low, hence the siezure activity. So they had me take a double dose that night to be on the safe side.I had the headache from Hell the next morning, probably from cutting down on the 'roids so drastically because I was too sick to take them. I also had my check up with the doctor scheduled, so Jim took the day off from work and we went to that. He was pretty concerned that the ER hadn't done the CT with contrast, so sent me for another one with contrast (yay) as he was concerned about bleeding in my brain. His nurse said he'd call if there was anything to worry about and I haven't heard, so no news is good news.Speaking of scans, this is what they did to me last week.The pictures don't really show the damage as it really is, it looks much worse, but just an idea.Ho-hum.So... There we have the latest episode in the saga which shall now be called As The Stomach Churns... Don't touch that dial!Nothing much else happening aside from vomit, seizures and plenty of naps. I don't think the mall walking will be taking place for a while (probably just as well, I don't think I'm up to contact sports, heh).Once again I want to thank you all for your comments and e-mails, I don't know how I ever got to 'meet' such amazing people, but there you are! And you put me to shame with your writing skills! Thank you so much for your support and for taking the time to put your feelings into words. It means so much to me...I'll work on a better entry when I'm feeling a bit better, thanks for sticking with me, guys![...]



"Is This It?"

Fri, 05 Jan 2007 13:39:00 +0000

Ever get to that point?By Wednesday afternoon, having been sick with a cold, swollen beyond what I could tolerate, having pains in my stomach and my head, feeling totally miserable because the meds I'm on make me so uncomfortable, feeling so tired that I was taking naps I couldn't wake up from, laying frozen in place for minutes after waking, unable to move, I reached a bit of a breaking point.I took a long hard look at everything and thought "Is this it?".You know... you get so sick and you know you're not going to survive it and you just focus on buying that time, but you never really allow yourself to think about how you'll know when that time is almost up.Is this it?That gave me a very bad moment, almost to the point of feeling sorry for myself, which you know I won't do. I dismissed self-pity as being a pointless waste of energy within about thirty seconds of thinking 'is this it?'. I realised, with my one last shred of common sense, which was hanging on by it's fingernails, that I needed to keep my wits about me lest I lose them forever.I'm not kidding when I say that the mere question had the potential of bringing on complete and utter panic. I decided to sit and have a good cry, it seemed like the appropriate reaction.I was just so tired, tired like chemo tired, more so. And I know I've just had all that radiation to my brain and the cold and the holidays and that I should just expect to feel crappy as hell sometimes, but I think that when you get to that point of tired/ill, reason goes out of the window just a bit and you can't focus on anything but feeling like something the dog doesn't even want to roll in.Anyway, my crying therapy was interrupted by Jim coming home from work. Bless him. And of course I was in no fit state to pretend that I was really fine and just having a little crying meltdown moment to relieve stress. I told him everything. Poor guy. He doesn't need to be hearing my dark stuff... it's selfish of me to even go there with him. He doesn't mind when I do, but still... it's not just about me, the whole point is to support each other and that's got to be real, he doesn't need my dramatics. (However, I think I might just need time to be a bit dramatic inside my own head if I feel so inclined sometimes. At least it gives me something to laugh at myself about later)So that was that.I sat mindlessly at the PC for an hour after the crying stopped, reading the irreverent humor at one of my sites, feeling pretty numb and like I was just...fading away.Suddenly, it was like the sun coming out. Out of nowhere I felt BETTER. Like, could get out of the chair without feeling like a 90 year old woman better. Like go into the kitchen and load the diswasher better.How did that happen? I was feeling so rough that I was thinking maybe my time was coming to a rapid end and then suddenly out of nowhere, I'm back to being me again.I swear on my life it's something to do with PMS. Seriously, my cycle has recently affected my condition severely. The day I went to the ER with seizures after being woken in the morning with the headaches and vomiting, was the first day of my period.I know I'm due soon, and the meds are probably stopping it from messing with my brain tumors like it used to, but looking back, what I've been feeling this past week or so is very similar to how I've been feeling every month since at least September.The bottom line is that later that evening, I was out at the store doing a huge grocery shop, which I came home and put away while I made meatball subs for Jim and I. (He came with me, I was too medicated to drive at that point. Heh.)I'm not sure what happened, I'm just glad to be feeling better. Back to me again. Went for a walk out back while Jamie slept yesterday and everything.You know, the REAL bottom line of Wednesday evening was something much, MUCH better than anything that happened to me though...While I was putting the groceries away, my son David (11th grade) came into the kitchen and announced that he's been invited to join the Nat[...]



The bonfire of my vanity.

Sun, 31 Dec 2006 10:38:00 +0000

I've been sick.From something other than cancer that is... to be honest, it felt good being feverish and blowing my nose and coughing and knowing that I didn't have to worry about any of it being melanoma related.Of course, being a mommy, I found myself out at WalMart the other day anyway with my daughter Isobel, who needed winter boots, she'd seen some she liked there and they had her size and I know enough to get them when I see them, because her size seems to just go very quickly and then you can't find anything.I was feeling crappy and got ready real quick. It wasn't until we were in the store and I was looking at fat sweaters (nothing fits anymore because of the steroid weight gain) that I caught sight of myself in a mirror and realised what I looked like. I looked like I got dressed in the dark. I was wearing black slip on sneaker/mules (feet have been swollen), navy blue socks poking out from under faded black yoga pants, a red sweater that was too big while I was pregnant and is now tight-ish and an olive green ballcap.I'm sorry, but when you're the worst looking person in Walmart, you know you're in trouble.I was a bit mortified to be honest. Especially given my hair loss and the fact that I used to be very pretty and am just this swollen, fat moon-faced freak right now.I decided then and there that I was NOT going to buy any fat sweaters, I was going to hold out for the time when I get off of these damn drugs and lose this weight and start feeling like me again and wear my own clothes. Buying those sweaters felt like giving in.So Izzy and I went to Tim Hortons after for a drink and a muffin. I guess I keep forgetting what I look like because inside I'm still the same no bullshit person I always was. They were pretty busy and I had two clerks waiting on me, trying to rush me, so I told them "I know you're in a hurry, but I won't be rushed", in my usual nice but don't mess with me tone. They sort of looked at me and I could tell they were thinking you frigging freak, look at you.Whatever. I'm tired now and you are becoming tiresome, I thought, shut up and give me my freaking coffee and donuts, I smiled as I walked away.We sat down to eat and it was one of those Chinese take out experiences all over again. I handled it better this time though, my vanity has truly been burned to the ground and good thing too. It was slowing me down, worrying about what people think was pointless. And most people seem to get it, most people are nice. As I struggled through the Christmas shopping, I met so many kind people. People who stopped me in stores to talk to Jamie (because he's too cute!) and wish me a merry Christmas and didn't look at me like I was a freak. I think that day was just one of those 'everyone's totally miserable after Christmas and determined to behave like ignorant asses' days.My hard thing has been losing my hair. Out of everything (and I know this sounds soooo stupid and vain) it's been the most difficult thing personally for me to deal with. I always thought I'd be able to just handle it, I'd just buzz cut it if I ever faced losing it. I was wrong. I got the clippers out one day and just couldn't do it. You know what it feels like? (not to sound dramatic) It feels like victimisation. Getting cancer can happen to anyone, I don't feel victimised by that and I really do want to fight back hard no matter about how I look, or my hair, or how tired I get, or how crappy I feel, or anything.But losing my hair made me feel like a victim. Try as I might and no matter how strong I've been or will have to be, I just can't shake that feeling. I guess it's better than being depressed because I have cancer and being unable to handle that part though, because I can at least look myself in the eye and say "it's only hair idiot, get over it", I'm not sure you can say that about stage IV cancer.Freud would probably have something to say about that! Heh!So that night I was feeling pretty bad about myself and everything. I really let myself get do[...]



Time to play The Game!!!

Sat, 23 Dec 2006 11:02:00 +0000

Mua-ha-ha-ha-ha-HA!!It's all about the game and how you play it.All about control and if you can take it.All about your debt and if you can pay it.It's all about pain and who's gonna make it.I was mooching about the other night and ended up catching the end of the WWE Monday Night Raw. It was utter crap, of course, but Triple H was on and it reminded me of watching Wrestlemania 21 a couple of years back. The only good thing about the show was that Motorhead performed The Game (Triple H's [then] theme song) live. It was worth sitting through the whole show for that.Anyway... back in my right mind... (yeah, right)I'm sleeping again. I can't get enough sleep. It's confusing. I sort of wish my body would make up it's mind... errr... my mind... errr..... well, you know what I mean.I'd sort of like something in between 'roid rage and catatonia, thanks. Any sort of level ground would feel so wonderful right about now. But maybe this is just how it's going to be. Maybe playing on an uneven playing field is part of my life that I'm going to have to stay used to and expecting things to level out anf give me a break is unrealistic and...weakening.The older subcutaneous tumor on my butt has got bigger, it looks a bit like a boil, but I'm not even fooling myself that it's not mel. The one I found the other day is elusive, it peeks out through the layers of dimples (thanks decadron!) ocasionally. I have now found another on the back of my left thigh... these things aren't shy about coming forward either. You feel a lump then *BAM* (bit of Emeril there), all of a sudden there's a freaking great tumor sitting there.This is going to sound strange, but to be honest, I don't really worry too much about sub-q's. I figure that as long as they're coming out in my skin, they're not in another organ. They can be resected, cherry picked, I don't consider them life threatenting. In the time between April and October, aside from the MOALT which didn't want to stop, the only progression I had was a few sub-q's and they seemed to arrest themselves with Temodar. The original ones are the same as they always were. It's only with the brain metastasis and the steroids that these new ones have shown up for the party.That's not to say that sub-q's aren't something to worry about, of course they are. And when you find a new one, it's pretty terrifying, because it means that yes, mel is still lurking and it gives you this sense that it's totally random, which it is. And it can move so horribly fast. But in my situation, after the initial "OMG" moment, when I remember what I really AM facing, they just seem a bit...I dunno... redundant. Does that make any sense? They're not going to kill me, that job has yet to be decided on between the brain and the liver.Bastards.I'll get scans next week and get back in The Game, I guess.I'm taking my kids out today so that they can buy gifts for Jim and feeling so lucky that I can do so. I was laying in bed thinking about my first week or two of treatment back in Oct/Nov. I was just in bed and going for radiation, taking chemo and thinking that this was it for me. This was going to be the rest of my life. And I was happy with that, because I was glad to be alive. But now I get to do everything a regular mommy does again and I don't ever want to let that go.I also plan on taking some of that wonder drug, I mentioned in an earlier posting to spike peoples coffee with... Should be fun!I think I can do it, I'll use the kids as a diversion.Anyway, having said all of the above, if someone were to offer to take the kids shopping today, I'd be much obliged. Just kidding, the stores are going to be busy, but all the aggressive, frantic people out there have got nothing on a woman with (hopefully rapidly shrinking) brain tumors and 'roid rage. Plus I won't have Jamie, so that'll free me up a bit.I found this poem and thought I'd add it here.Meanings...Standing for what you believe inregardless of the odds against youand the[...]



That's MRS Doofus to you!

Fri, 15 Dec 2006 12:08:00 +0000

So, remember the time in the Chinese take-out place when I was feeling like people were staring at me because I'm a moon-faced hairless freak?Jim and I went out on Saturday to take care of some stuff and have our anniversary breakfast/lunch. I noticed that people were staring at him and giving him odd looks (more so than usual). He noticed it too and we wondered why... then I looked at him and realised that he was wearing a black AR15.com ballcap, complete with an embroidered image of a rifle on the front. They probably thought he was a mass murderer or something, rather than a supporter of the Bill of Rights.Because that's how people get, I guess. Either that or they were thinking of asking him what his screen name is...ANYway... that night in the CTOP (Chinese Take Out Place), I'd borrowed his Arfcom hat... I think that's what generated the attention. Maybe. Or maybe it was being a zitty, moonfaced hairless freak sporting a ballcap with *gasp* a firearm on it that did it.Anyway, in the spirit of honesty, I wanted to post that. Doofus? Moi?? Mai, oui.So Tuesday was my last day of treatment. I'm pretty glad that's over, it was do-able, but the logistics were challenging. I'm doing okay, pretty tired, a bit headachey, nothing major at this point and certainly able to function normally. Keeping my eye on these headaches because I don't want to land up in the ER again. Half a Lortab seems to put the pain away nicely...I have done no Christmas shopping. None. It's going to be an interesting weekend... The most I've done is put up some lights, no tree yet either. I need to get my butt in gear. Jim's had the flu/headcold thing all week, so there was no way I was asking him to bring me in the truck to get the tree. Poor guy's working in a cold building feeling like crap all day, he deserves to come home and rest.This is a funny Christmas for me... On the one hand, I want to make is so special, and on the other hand, I have practically zero interest in the accompanying rat race that people put themselves through. If I didn't have kids, I don't think I'd bother too much this year... a little bah humbug I know, but it's been a heck of a year. I'd rather go on a cruise and be waited on hand and foot. Nowhere warm, maybe one of those Alaska cruises.You ever feel like just being a bit selfish?I know I can't, not ever, but sometimes I'd just love something good, and for it to be about me, rather than it being about everyone else. Because apparently (new realisation as I'm writing), I'm still feeling guilty about having cancer and breaking everyone's hearts and I think I'm trying to overcompensate for it. As if anything could ever compensate for facing the thought of losing your mother or your spouse...I so sound like I need a break, huh? It's all good. I'm not special, we all need a break, all of us melanoma warriors and caregivers.I do know how important these memories are going to be to my children though, so I'm determined to do the rat race if I have to. If this is the last one I get with them, they deserve to have it be special, they deserve the memories. If it isn't my last Christmas (and who knows? I'm not special, like I said, there's no reason why I can't keep on keepin' on here), maybe we'll go away next year and get waited on hand and foot!Call me a whaaaambulance if you must, but I feel the need to be pampered.The holidays kind of snuck up on me this year... actually since I've been living in the USA, this has been happening a lot. I think Thanksgiving throws me off a little. When I lived in the UK, I'd have all my shopping done by the end of November...Doesn't look like a white Christmas here this year either. Buffalo is having unseasonably warm weather, which is great for the heating bills, but sad for the Christmas lights. Oh well... no icy roads to traverse to get to Toyr'R'Us, no slippery parking lots to stagger through... maybe that's why my Christmas spirit isn't in full flow... no[...]



What do I care 'bout that winter storm?

Sun, 10 Dec 2006 19:34:00 +0000

I've got my love to keep me warm!Probably the last time I was truly, joyfully happy was December 23rd 2004. Sitting in my hospital bed, burping my newborn baby, watching some dumb morning TV show, where Barry Manilow was singing that song. I was SO happy. I felt like nothing could ever hurt me again. Nothing could take away the perfection of that moment.That evening I was told that I had cancer.Since then, there has been happiness, but it has always been tempered with the thought of cancer. True, unadulterated JOY is gone forever.I mean, I'm happy now... living life one day at a time, taking every moment as it comes and trying to make it special. I'm not unhappy... but my life is different now. I see everything in a completely different way. Some of it hurts like Hell and some of it is in a better way, if that makes sense. It's like cancer gives you a different outlook on life, situations, relationships... pretty much everything.There's a lot to be said for making every second count even if you don't have cancer.If you've been reading this blog for a while, you might remember where I was speaking of cancer being a bit like grief. You go through the same sort of stages as you navigate your way through the situation.I think where I am now is acceptance. When I was in the hospital, I pretty much accepted that I probably wasn't going to survive this latest setback. I let go completely. I think that did me good, because as I began radiation therapy and started to feel better, I just allowed that for myself.It was a hard place to get to, but it's so much easier once you're there. I'm not saying that I accept this is going to kill me right now, or anything. And I'm certainly not giving up the fight. Just that I accept that this is how it is, there's not much I can do other than what I'm doing and I can't waste my time fighting demons I can't see. That's what cancer feels like sometimes, a demon hovering in your peripheral vision, just visible enough so that you can never really forget, or not for long anyway.That's where having enormous balls comes into play. You have to look the bugger straight in the eye and tell him, "Screw You!". You might have my body (for now) but you can't EVER have ME. I don't know about you, but I'd rather have eyes on the asshole than keep him in the periphery where his only purpose is to screw with my life, my happiness, insidiously, sneakily.I've always been a bring it on kind of a girl.Cancer knows that I know it'll kill me eventually, I look it in the eye everyday and acknowledge that, then I tell it, "But not today..."Not today.[...]



Life in the slow lane.

Tue, 05 Dec 2006 16:52:00 +0000

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

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

Anyway, I nailed it. No worries.

So how is SRS?

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

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

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

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

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

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

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

Dammit.

But maybe that's not realistic.



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

Thu, 30 Nov 2006 16:08:00 +0000

Okay, so I was thinking... This blog is published on a couple of other websites and some people who read it are probably wondering "what in tarnation has all of this twaddle got to do with melanoma?". Well, the name of this blog is Living With Melanoma, and we all know that there's far more to living with cancer than the medical stuff. There's the human aspect, which is just as - if not more so in some ways - important.But to throw in a bit of medical stuff, I just did my last session of WBR this morning. Melanoma is very resistant to radiation, so I was given the maximum dose of radiation for WBR. I did 22 treatments. The next step is reduced field SRS to two smaller areas for seven days. I'm not sure what happened about number three, because nobody is telling me anything, it's all very low-key and I'm a bit of a mess about it all right now. I sort of feel like I see a light at the end of the tunnel. I'm just hoping it's not a speeding freight train bearing down on me, you know?WBR was getting pretty tiring. It's been a challenge getting myself to and from the appointments, I'll be honest with you, especially towards the end of the week, but it's still do-able. And I'm still so totally happy to be able to get myself around, I thought that part of my life was over. I even held off on my drugs a while yesterday and took the baby out, we just mooched around a couple of stores, but it was such a pleasure. I don't care what I look like, I felt normal.So, seven more days.And then I get the rest of my body scanned for the doctors in Rochester and anyone else who's interested. I have no clue at this point what's going to happen. In an ideal world, the MOALT will be at least stable and nothing new will have shown up and I can have the smaller liver mets treated with Novalis in Rochester. Then thinking of a spleen resection and getting the subcutaneous tumors out too. I'm also willing to listen to what this new radiation guys has to say - assuming that I'm still pretty much stable, he had mentioned that he wanted to take a look at my liver too. Thinking on it though, I sort of prefer Novalis for the one session only deal and no more having to go every day for what seems like forever to get treatment.But we all know that we don't live in an ideal world - especially not with melanoma, so I'm mentally preparing myself for the worst. And of course, if the worst is what it is, then I'm pretty much screwed as far as IL-2 is concerned because of my brain, as I believe we have to wait and see if there's a response to the radiation before they'll allow me to do IL-2..So the thoughts go round and round and round.... Blah. I'm sick of it. I want a vacation from all of this cancer stuff. I feel like a broken record.I read a book a while ago called 50 Essential Things To Do: When the Doctor Says It's Cancer. In it, the author says something that really made me think: Stop "Awful-ising".That's what I need to do. Right now. Stop Awful-ising. Maybe it's tiredness from treatment, which gets more pronounced as you go along, I knew that from before. But this needs to stop. If my scans are bad, I'll deal with it once I know. Time is short, why waste it awful-ising when I have no clue that it's going to be bad? So... prepared for the worst and trying not to think about it I am. If the brain thing doesn't work, then at least I had this time, which has been amazing. BUT... I'm still more into that why wouldn't it work? mode....Confession (and background to where a lot of what I'm saying today is coming from): I had a bit of a meltdown on the radiation table yesterday as they were taking films of my head. I was laying on the table and they kept coming in and measuring me and whispering 'that's not right' and leaving and taking more films. I was there for ages, like 30-40 minutes. I just started crying like a baby because I thought somethi[...]



One.

Sat, 25 Nov 2006 16:04:00 +0000

Since my mad dash to the ER happened on our wedding anniversary, Jim and I decided that we would make every Saturday our anniversary for the rest of my life.We're about to go out for breakfast (or maybe lunch as we're taking our own sweet time getting ready) and then we'll find something to mooch about with for a few hours. Sometimes we go to the river or the lake, but today I think we're going to stay close to home. We'll see. It doesn't matter where we go, every moment is so utterly special for us.Something funny, I woke up at 3:30am and couldn't get back to sleep, so took an Ambien. It lasted for two hours. I was miffed, thinking I'd get a long sleep - went six and a half hours the night before on it. I just lay in bed and laughed to myself... sleep will come when it comes, obviously. It was a gorgeous sunrise though, sat with a latte (actually just remembered I have the machine as it was put away when we moved and forgotten), looked out the kitchen window and enjoyed feeling good before meds for a while.The mean person mentioned in my previous post publicly apologised to me today. I spoke of the meaness, so thought it was only fair to speak of the apology too. To publicly apologise takes a certain amount of courage and I graciously accept the apology in the spirit with which it was intended."Heather I would like to apologize for my previous post. I guess I was having a bad day and took it out on you. My words were hurtful and for that I apologize. I stuck my nose in where it didn't belong. You are a strong person and I commend you in your fight. I wish you the best of luck in your battle."Fair enough. I have no reason to believe it's not genuine, no matter who they might be.Bit of a short, mellow post today, I woke up with this song running through my head and can't stop singing it. One, by U2.Is it getting better?Or do you feel the same?Will it make it easier on you now?You got someone to blameYou sayOne loveOne lifeWhen it's one needIn the nightOne loveWe get to share itLeaves you baby if youDon't care for itDid I disappoint you?Or leave a bad taste in your mouth?You act like you never had loveAnd you want me to go withoutWell it'sToo lateTonightTo drag the past out into the lightWe're one, but we're not the sameWe get toCarry each otherCarry each otherOneHave you come here for forgiveness?Have you come to raise the dead?Have you come here to play Jesus?To the lepers in your headDid I ask too much?More than a lot.You gave me nothing,Now it's all I gotWe're oneBut we're not the sameWell weHurt each otherThen we do it againYou sayLove is a templeLove a higher lawLove is a templeLove the higher lawYou ask me to enterBut then you make me crawlAnd I can't be holding onTo what you gotWhen all you got is hurtOne loveOne bloodOne lifeYou got to do what you shouldOne lifeWith each otherSistersBrothersOne lifeBut we're not the sameWe get toCarry each otherCarry each otherOne I Love You![...]



Strong.

Fri, 24 Nov 2006 11:22:00 +0000

Okay.... This turned out to be a long one, you might want to grab a latte and a slice of pumpkin pie and take a couple of Motrin (maybe a Valium) before you start reading. Oh, and I put in some pictures to break it up a bit. Oh, and you might not want to read the end part entitled The Ugly if you're easily offended. [/disclaimer]Yesterday was Thanksgiving (master of the obvious, me, I know).I found myself having a bit of a moment at one point.I mean, I was totally on the ball and soooo organised. The dinner preparations went like butter, my girls helped me, we had a lot of fun. It was a labor of love, there was no work involved.Jim and I had to run out early in the morning for something we'd forgotten the night before when we did the big grocery shop.*****Short funny story while I think of it; I had earned a free turkey with my card from the local supermarket, so went to pick it up on Wednesday evening. Awesome you say, every little helps! That's what I thought, I was going to give it to the food bank, but realised that with the storm and then my issues, Jim had missed quite a bit of work and things got a bit tight there for a while, so I'd better keep it, because there's been times this past year where I've worried about having enough food for my own family, I'll be honest, and I can't be so arrogant that I don't expect those sort of times to come again.Anyway, the turkey... Did I mention that it was frozen? Did I also mention that I knew it would be frozen?I said to Jim, no way we're eating that turkey tomorrow.We were like the Pilgrims!In true Pilgrim mode, I decided to go forth and find a fresh turkey. I'd like to take this opportunity to thank my husband for his patience and sense of humor. I have no idea how he puts up with me.We went to another local store, Wegmans. I used to work for them, in perishables, so I knew they'd have fresh turkeys right into Thanksgiving day. They had a couple of nice, large turkeys there on the shelf. "Kewl" I say, and then look at the price of the maybe 20lb one. $53! I stood there and laughed my butt off.Jim was all for just buying one, but I told him I'd eat frozen pizza first and have the other turkey and our Thanksgiving on Sunday before I'd spend upwards of $50 on a turkey. I mean, sheesh, I'd go out back and shoot one before I'd do that - although who wants to spend the night before Thanksgiving plucking and disembowelling? UGH.But I had a better idea..."We're going to Walmart." I say the dreaded words to Jim. He pales slightly, but takes it like a man and off we go.We have quite a nice supercenter here in town, btw.It went like this; Parked car (need handicap sticker - keep forgetting about being terminally ill), walked into store, hit meat counter, find shipload of turkeys that they'd had the sense to defrost so that doofuses like moi can eat Thanksgiving dinner, look at price: $22. For an 18lb bird.Plus all the cashiers had a great laugh at my doofus-ish-ness and the $53 turkey at the other place. Leave 'em laughing is my motto, it's a good feeling to make someone's day by just being normal and nice.So anyway, back to our usual scheduled program.*****So yeah, we had to go back to Wallyworld the next morning for a couple bits and pieces I want (did I mention that the shopping trip the night before took place at 11pm?). Not sure why we bought the new shower curtain liner and bathmat, but oh well. It was as we were driving home that I got to thinking about how lucky I am. I guess the spirit of the day, which we all know isn't about turkey, puts you in the mode to be thankful for what you have.I got to thinking about people who are having it so much rougher than I am. Cancer patients in the middle of their Hellish fight. Children with cancer, who face it with far more dignity, strength and courage than I could [...]



I'm Still Standing!

Tue, 21 Nov 2006 16:00:00 +0000

On Saturday evening, I felt well enough to go grocery shopping. Afterwards, Jim and I walked across the plaza to get some takeout food. Chinese for the kids and I, Subway for him. I ordered the Chinese food and sat down with a cup of tea to wait, telling Jim to go ahead and get his sub. I was tired by that time and needed to just take a minute.As I sat there, I realised that people were watching me. I mean REALLY watching me.I've had stage IV cancer since April. But have never looked like there was much wrong with me to be honest. Now it's a different matter. I look like a cancer patient. I was wearing my ballcap over my extremely thinned out hair, but you could tell things weren't right. My poor swollen face and black eye circles, the steroid zits, the weight loss along with the huge steroid tummy. All of it unimportant to me because I'm doing what I have to do to survive.But see, for the past three weeks, I've been living in a different world to the one I was used to, the one everyone else is used to. I'd forgotten how it can be out there. I sat and sipped my tea and just breathed it out, but the attention was making me feel claustrophobic, isolated. I realised that it was the first time I'd been anywhere alone, without Jim, since this latest setback. I also realised that the only way to get through was to behave as if I had a little dignity, because frankly nobody else seemed that way inclined and sometimes what you take away from an experience is all your own.As I walked to the counter to get my order, people's heads turned and followed me, then did the same as I walked out of the door. I'm not sure it was meant unkindly even, just... I dunno... stupidly maybe? People just don't always think...And maybe I'm was just feeling a little bit vulnerable right then, maybe I should have just stared back, or taken my hat off, or something. That actually sounds more like me, but I wasn't prepared for how it was, wasn't expecting the claustrophobia. It silenced my ballsiness, damped down my fire just a little. I didn't like that. I won't say that I felt sorry for myself, just a little... weakened for that one moment. And of course I was really tired, so that didn't help. Was probably a huge part of it actually.I felt a bit like I was no longer a real person, just for that minute in time... It was a... moment. A small moment of clarity that I didn't have before. I never realised how much I hide behind Jim on the rare occasion I'm in public now.I'm over it, I went home and served up the Chinese food for the kids and as I did so, I was singing "I'm Still Standing", because that's the REAL truth of who I am. I know it, the people who know me know it. The rude SUV drivers in the Chinese takeout place don't need to know it. It's none of their business.More positively, the next morning I felt really well. I held back on my meds and was able to drive myself for radiation (Jim came with, just in case). Just to be able to drive my car was so amazing. Trivial, but amazing. On the way home, we stopped at Dunkin Donuts (nobody stared) and I ordered coffee and donuts to go. By myself. I wouldn't have been able to do that three weeks ago. I could barely hold a conversation back then. That whole morning was like a gift. Seriously. It felt awesome.Better yet, I drove myself yesterday and today too... And even better was the news from my doctor that we have "continued objective and subjective improvement in the tumor fields with no edema or other adverse side effects and vastly improved cognitive abilities". My treatment seems to be working. He looked at me, grinned and said, 'we're looking good, we'll just carry on'.So day 17 of WBR...Don't you know I'm still standing better than I ever didLooking like a true survivor, feeling like a little kidI'm s[...]



Living with Sasquatch...

Fri, 17 Nov 2006 22:33:00 +0000

That would be moi!

Okay, so my hair is probably not going to last the weekend. At this point, I'm changing my sweater a few times a day because I have so much hair all over me I look like a mammoth. It's really weird. The funniest part is that my eyebrows have grown back in to their fullest and the steriods have given me a bit of a mustache.

Needless to say, I look freaking hideous. Steriod zits, radiation burns, severely thinning hair and a big old hairy moon face, complete with designer black portmanteaux beneath the eyes - not to mention the steriod weight, 'is that twins?' I have to laugh... it's so not important. Just another part of it all. I had the thought to go to the salon tomorrow and have my brows and 'tache done, I might be bald as a billiard ball by Monday, but by God, I'll do it with impeccable eyebrows!

So my ballcap is my best friend right now. I tried a scarf today and looked retarded, it scared the baby too, bless him, then it fell off and wasn't really comfy anyway. Screw it, its my head, if people have a problem with my Grace Jones look, they can just deal with it.

I had to go to Rite Aid this evening to pick up my drugs, because they screwed it all up yesterday. Jim and I were in line and he mentioned something about my cancer, the lady behind us actually stepped back like she thought she was going to catch something. Pretty much all you're going to catch from me is a dose of sarcasm, but I didn't bother to tell her that.

It's strange, because when you're dealing with cancer, it becomes your normal and you tend to forget how scared people can be of the actual word alone. I can't say I blame them. It's a terrifying thing and nobody wants to think about it, deal with it. Not even us, although we have no choice in the matter.

To me, this really is normal now. You make your own normal when dealing with setbacks in life and cancer isn't any different. It sucks, and no, there is no 'reason' it happened to you, no 'higher calling', no 'lesson', no 'gift'.

The thing about it is what YOU do with it once you have it.

It's not up to any higher power, what matters is how YOU handle it, how YOU make it count in your life. Something good from everything, you know? This blows, but if it doesn't work out for me how we hope, I really hope that I can have made something about it count... That's important. At the end of the day, in my opinion, life really just boils down to the person you are. That's all we are left with when things get grim and it's what keeps us going through the rough times.

Whoo! Short blog today because I just took a Lortab (does it show? LOL).

Hair loss? Bleh. Screw you melanoma. Still can't beat me. I have radiation on Sunday because of the short week next week. I told them "good, maybe it'll confuse mel into dying faster".

(image)



For posterity

Fri, 17 Nov 2006 10:12:00 +0000

I should have posted this yesterday, but was too busy being able to BREATHE a little for the first time in.... well, forever.

My doctor says that we have managed to reduce down my tumor fields.

The radiation seems to be working.

I believe that we must celebrate with every piece of good news and this is very good news!

I said when this all started that my family has a lot to be thankful for this Thanksgiving.

Even more so now.

Just this glimmer of hope, REAL hope when I've been holding on so tight for so long to the fact that there is always hope is beyond description for me.

I can't say thank you enough to everyone for your support. I never knew there were people like you in the world. Every day I am still blessed with Angels.


ALWAYS HOPE


Remember that.



In a word, flatulence.

Tue, 14 Nov 2006 13:03:00 +0000

I'm not kidding, I have taken to speaking out of my arse. (It strikes me as funny considering they're treating my head... some sort of redirect perhaps?)It's not a big deal, nothing a few apple/cinnamon candles placed in discreet locations around the house can't dissipate. But damn, the indignity of it, it's sort of distracting halfway through a sentence when you're actually managing to say something that doesn't make you sound like the moron you have become, you get *that* feeling. Brain power fades, butt power kicks in and that's you for a while.It started on Saturday, probably in direct response to my last blog which basically pooh-poohed the side effects of treatment. My body probably just thought, easy huh? I'll give you easy! BUT (take this body, cancer and all), it could be worse... I could have that concrete gut thing from chemo. So hah. Can't beat me yet, cancer. Give up, go home, be the loser you are. I have half of Yankee Candles Inc. in my house and it smells great, thanks.You may have taken my health (although aside from cancer I'm so disgustingly healthy it's not even funny), but my dignity - and my bowels - will remain forever mine (if only in my own imagination).You know, sometimes I get to the point where I hate some of my blogs. I read them back and think I should delete them. But then I read the comments that people leave for me and the e-mail in my inbox and realise that, yeah, this might just be doing what I'd always hoped since starting it. It was always my intention to try and help people to get through, you know?I mean, it's not like I think I have anything terribly profound to say, there are lots of great bloggers out there, better than me by far. But my philosophy has always been to try and keep it real. Honest. I just feel that seeing someone be totally honest about their experience and how they're feeling, even if you don't agree with them, can help you find your own honesty, which can only be healthy. There's nothing more real than having cancer.I just want to say to everyone, please don't be afraid. It totally blows, of course it does, but you can do this. You really can.Quick rant: A bit of a contention with cancer literature and how cancer patients are treated:Sometimes it's just too much freaking pressure.Lemme explain where this is coming from... (and it's probably just me right now with one of my little foibles as I try to figure this crap out, flying by the seat of my pants)I have always been a great believer in attitude. But lately whenever I read a magazine article or book about cancer and they start in telling you that you *must keep a positive attitude* to survive, I just start to feel completely exhausted. We're pressed to be proactive, stay positive, blah blah blah. Eat grapes and drink water, that'll cure your cancer. If you want to get better badly enough you can and will. Most oncologists would never take chemo if they got cancer (easy to say when it's not eating you alive, huh?) OR prescribe it for their families.I started reading a magazine Jim had picked up for free at the rad/onc place last week and got a bit angry to be honest. Just leave me the hell alone. Please don't tell me at this point in my life that pretending to be happy will save me. Give me a little credit here. I used to be intelligent.Maybe.... just maybe.... at this point I want to be able to just be sick and have my doctor take care of me.Maybe I don't have the incessant energy for positive rhetoric that I used to.Maybe all the ex-spurts should just think about writing books about how cancer REALLY is, or (better yet) just shut the hell up and watch the damn paint dry for a bit.It doesn't help.We don't need to be browbeaten by some[...]



Finally arrived!!

Fri, 10 Nov 2006 20:34:00 +0000

I got my first spammer! I think that means I've finally arrived on the blogging scene.I sort of like spammers, they're just dumb enough to make me feel real good about myself even with my impaired mental function. "Nice blog" this one said... Oh thanks, glad you think my brain tumors are nice... It begs the question, I have brain tumors, what's your excuse?Oyyyyyyyyy......So... Whole Brain Radiation. Let's talk about that for a bit. Not the technical stuff, because I'm not lucid enough to do that right, but about what it's like.I know about the possible side-effects. I know that it can lead to memory loss, cognitive issues, hearing problems etc and, well, death. But let's face it, what's the alternative? Don't treat my cancer and then what? Death is a pretty permanent side-effect in any form if you ask me. I'd rather have a chance.Funnily enough, it's do-able (WBR, not death). I know how scary it sounds, but in retrospect, once again, not a really big deal. I hate to do that to you, sort of want to describe how horrendous it all is and everything. But looking at it, yeah, it's had it's infinitely horrible moments, yet I can't say I wish I wasn't doing this because it's too hard. If you want something badly enough, nothing's too hard.I mean, my poor little lumpy, burning, sore head is telling it's own story. But is it worse than the itchy, burning chemo foot thing? Nope. My hair is on the fence right now, I'm losing a bit, but nothing major, just being really gentle with it and trying not to scratch. I find myself unable to make a big deal out of this. All you can really do is try to get comfy, put your big girl panties on and suck it up. I'm having probably more GI issues with this treatment than my liver treatment, and part of that might be the drugs I'm on. I'm losing weight like crazy and simply can't get enough food down me. My doctor had warned me about mouth issues too, from the rads and the meds and yesterday it felt like my mouth was starting to bake a loaf of bread, so Jim got me some Biotene toothpaste and mouthwash last night. I used it one time and the symptoms eased beautifully. Just keeping up with that during the day. Once again; do-able.I was going to splurge on some Nioxin for my hair, but to be honest, the doctor told me it might be gone in 6-8 days, so I figured that by the time I started using the product, it'd be defunct anyway. Since Jim cut that 10 inches off my hair though, it's so much more comfy and managable and not dropping as fast, day 9 today, so we will see. It's not really important, but has to be mentioned because hair loss is so much a part of being a cancer patient that I'm not going to ignore it. We all have our own methodology of how we deal with it I'm sure. Some people bite the bullet and shave it off, others, like me, hope for the best and nurse it along, I guess.It's cancer. You do what you have to do to get through this day.Tomorrow can take care of itself.Let's face it, cancer is going to screw with your quality of life more than anything you've ever dealt with before. If it's not the stress and anxiety, it's the treatments and the side-effects and trying to find a way to make it all fit so that you can still be you.By the way, I met more Angels today. People's kindness is astounding, overwhelming... Humbling.[...]



Ah, insomnia, so we meet again.

Wed, 08 Nov 2006 14:22:00 +0000

You know how I always say that I know when I'm starting to feel better because I can no longer sleep? Well, it's back!Oh insomnia, you had to just remove that small corner of comfort from my life that lies in me snuggling in on my left side against the pillows, clean Kleenex in my bottom hand under my chin, other hand relaxed and limp, legs bent, aching back finally relaxed and secure as I veer into blessed unconsciousness for an hour or two.Today is day 3 of no-nap time. No afternoon nap, small(ish) evening nap, then awake all night, just laying there listening to Jim breathing and trying to control my medically-induced rumbling stomach. Chicken and dumplings sound soooo good at 1 am.I became real nap-py before we found the tumors in my brain, in fact there were times when I couldn't stay conscious. Then when Jim got me to the hospital, they pulled me back from the edge with drugs that just threw me sideways. I sort of slept at the point, but it was more than sleep. I could hardly keep my eyes open. Forget TV, forget conversation, my eyes would close and I'd be hearing you, but unable to respond.They finally sorted my drugs out over the past week and things have started to settle down a bit. The most positive news for me is that, after needing it constantly, I now only take half a Lortab in the morning before radiation to counteract any chance of pain from the treatment. Otherwise, the pain is gone (something I wasn't sure would happen ever again).Decadron isn't easy to deal with and I have to take something else to stop it eating my stomach apparently. These drugs make me hungry, so I'm like a little piggy, eating away and, well before, sleeping away. Dilantin was making me drunk/loopy/sleepy for a while, but seems to be settling into my body in enough of a dose to keep me awake at night now. Finishing chemo was a blessing, that extra medication was not helping me feel refreshed and energised if you know what I mean. The Decadron helped me to keep eating through this cycle though, which made my life much easier. Usually with chemo, everything tastes funny, but this time everything tasted great, I honestly couldn't eat enough and pizza with sausage, pepperoni and mushrooms (2 slices) is the only breakfast for a Sunday morning while watching Coronation Street.Hopefully the Temodar will have worked with the radiation to shrink/kill off those microscopic brain lesions allowing us to go in and work on the larger ones with SRS.I'm writing about this because I want to get it out there just how hard it's been to survive this episode. I think I'm probably making it seem easier than it's really been anyway, but my main point is that on Saturday October 28th (our wedding anniversary), I almost died. I'm serious, it was close and I knew it was - and now, a little over a week later, I'm blogging away with a relatively clear mind. This time last week I could hardly see the computer screen and trying to read or type was so painful I couldn't stand it.At this point, my thought-processes and decision-making are still somewhat compromised and who knows if they'll ever be back the way they were before. It just doesn't matter, as long as I'm here and able to love and live, I'll be happy to remain in the slow lane for a bit. I'm happy at this time to just enjoy the rainbow, the sun behind the clouds.There is always hope. I was ready to die and they pulled me back - my husband pulled me back as I was telling him in the hospital "don't let go of me, don't let me die in here". He didn't let go, he got me home and has held onto me almost constantly since, during the harder times of treatment and drugs and nightmare[...]



There are Angels among us.

Mon, 06 Nov 2006 13:24:00 +0000

There really are. And they come from the strangest of places in the most unlikely of forms.They don't always consist of the people who you'd imagined would be there for you at times like this. It seems to me that they are perfect strangers, who reach out and CARE for no other reason than that they want to. I have met many such angels recently and I feel so incredibly fortunate.It's been a bit up and down (understatement) recently. Having deteriorated pretty fast over the past few weeks, it was discovered that I now have mets to the brain, three larger ones and too many small ones to count. My radiation guy started me very aggressively on Temodar (a chemotherapy which has a known radiation response mechanism) and whole brain radiation to attempt to shrink these mets down. Needless to say that last week was... interesting... WBR is not the most refreshing of events, but then, this isn't Club Med and I'm not here to look good (especially not with this bikini line - did I just say that out loud?).The good news is that I have every reason to believe that this treatment will work, why wouldn't it? Why? I didn't get cancer because I'm special and it's certainly not going to kill me first because I'm special. We all get the same chance of getting the breaks here, there is no bigger plan.There is hope. Always.Once we have better control of the brain, the rad/onc will do targeted SRS on the larger brain mets - but that's not all, he's speaking of tackling my liver again after it's all over, then having my sub-q's removed. He wants remission. He said to me that with illness like this, in order to get better, you have to have good strong oil and good strong water and as far as he's concerned, I have good strong oil. He'll be the water. He sees no point in not being as aggressive as possible with this treatment, he wants remission and I'll take it if I can get it. If I got another year of life, no matter what I had to endure to keep it, I'd take it.With cancer, you learn to stop living your life in the long spells and begin to learn how to just enjoy the small stuff. The NOW. It's the hardest lesson and one that I think is the most monumentally impossible to do without the benefit of lots and lots of time, and time is what we cancer patients just can't count on.For the longest time, as you all know, my biggest fear has been leaving my kids. It still is, but something I have learned since this latest setback is that, it's not the letting go that hurts; it's the holding on too tight.This is probably all over the place, the meds make it hard for me to see straight. I just wanted to say thank you to all my Angels, those who e-mailed me, posted to me here and on Arfcom and MPIP, who sent me thoughts and prayers and best wishes and love and light and interesting packages in the mail, and hope, and who help keep it impossible for me to give up. I don't know how I'll ever respond with what I'm really feeling for all of you, it is so utterly overwhelming.I hope this will be enough.Today is another day and for the record, I'm feeling pretty all right. Maybe the radiation is killing those tumors already and my brain is becoming clearer, there's no reason to suspect that it wouldn't. Day 5 today. 9 more sessions of WBR left.By the way, they told me that my hair is going to be toast, so yesterday I had Jim cut about 10 inches off of it just so that it would feel more comfortable (it's so itchy). Thank God we're heading into hat weather, I'm scared to think what my poor little head will look like without all that curly hair, a taller version of Mini-me perhaps, but more evil...[...]



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

Wed, 11 Oct 2006 19:12:00 +0000

I feel like, if I don't start writing something, I'll never be able to write again. As the days go by, I just feel more and more... numb. I have scans soon, so it's the usual scanxiety, along with not feeling well. I know... call the whaaaambulance. But I don't ... feel well, that is.Last week I had what seemed like a stomach flu. But it's hanging on. And on. And on... And having melanoma, when we don't feel well, we get a little... antsy.Trying to keep a grip here and failing miserably to the point where I'm not making the phone calls I need to make to get my scans set up. Part of me just doesn't want to know.I think what happened to Kim, how quickly she passed has scared me more than I'll ever admit. You can get a bit tired of being brave, you know...? Sometimes... I can't believe I'm about to say this... sometimes you just want it to be over. You want to not have to worry any more. You want the fear and uncertainty to just... stop.Apparently I'm not in a good place right now.Heh.I'll drag myself out of it tomorrow and make those calls, I promise. I know enough to let myself have a bad day if I feel like it lately. Pretending to feel all right can sometimes add to your general crappiness, in my experience.Okay... whiny rant over.In other news, we're being forecast with snow tomorrow (to be honest, that's probably not helping). So I'm here trying to get the place winterised waaay too early.On a positive note though, we finally bought another car, a minivan, and plan on going on a short-ish road trip this weekend to see the fall colors while they're still with us. Something to look forward to indeed.We're pretty intrepid, the weather doesn't really bother us much. One of my all-time favorite trips was driving down to Pa in a snowstorm to go to a Christmas store. The drive through the Allegheny mountains in the snow was heavenly. We plan on doing it again this year... there's no time to be wasted, carpe diem, or was that hakuna matata...?Anyway in the spirit of such, this fall and winter are going to be about us going and doing things that I want to go and do. Sounds fantastic to me. I guess I'm pretty lucky.Okay, back to whining for a sec, because I've thought of something else to whine about. My lack of patience lately. I mean with my kids, I seem to be taking a lot of very deep breaths. I mean, God knows I love them, more than anything, but sometimes it just feels like there isn't enough of me to go around recently. Not to mention I have a headache that just won't go away.I don't know if I'm still recovering from radiation, or if I'm really sick (I mean REALLY as opposed to just terminally. Ha.), or if I'm depressed, or what. But I'm feeling just a little bit worn out.Anyway, I'm on it, if it doesn't pass soon, I'll go to the doctor and get some happy pills. Hell, they'll have the added effect of helping me blend in with all the housewives in this area... why not?By the way and speaking of such, I'm writing this with my 9 y/o daughter right next to me chatting on the phone and making squeaking whirly sounds. That has a lot to do with the fact that this blog is crap.Coming soon, back by popular demand... My sense of humor!!![...]



It was one of those weeks, huh?

Tue, 10 Oct 2006 19:14:00 +0000

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

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

Godspeed, Kim. Rest In Peace.

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Not so scary...

Tue, 03 Oct 2006 12:17:00 +0000

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

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After the last treatment!!

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



I guess you just never know

Mon, 02 Oct 2006 11:52:00 +0000

A lady went missing very close to here on Friday. She sent her kids to school and went for a run. The first time people realised she was gone was when she didn't pick up her 2 year old from pre-school. Now there are four children without a mother... I can't tell you how sad this has made me.The thing is, she didn't know when she put the kids on the bus and took the baby to pre-school that she wouldn't ever see them again. She was just out there living her life and some asshole took it away from her.It's a shock, because it's the sort of community where people don't always feel like they need to lock their doors at night, etc... I guess nowhere is safe nowadays.We used to live very close to the bike path she was running on, it always gave me the heebie-jeebies because it's so isolated. I've often wanted to take the baby for a walk along there, but wouldn't do it without a pistol, in the end, I just never did.As far as I know right now, they haven't found her yet.What this did to/for me was this; it made me realise just how finite life is anyway.As you (my two readers) know, my greatest fear is that of leaving my children. Cancer forces me to live with that fear every single day. But I have this TIME. That lady never got this. She was just taken.Me? I have time to make everything right for my kids. To put things in place that will - hopefully - lessen their devastation when I do leave.TIME.I have the time to let everyone know how much I love them every second of every day. It's really not to be dismissed.On TV, I once heard someone say that if they were going to die, they'd rather die from cancer than suddenly because it would mean that they had TIME to put things right. (I think it was CSI) I remember watching that and thinking that it must have been written by someone who had lost someone to cancer. I could relate, but was still terrified of leaving my kids.The terror is lessening now.I have a long way to go yet, with melanoma, but this is something that's never far from my thoughts - nor should it be. Because if I forget about it, I'm not using my TIME to the fullest capacity. Am I?The trick here, I think, is to be aware of this and use my TIME for everything positive that I can. Then, if I don't die too soon, we'll have had nothing but lovely positive moments with more to come. But if I do die, my family will know - really KNOW - how much I loved them.Treatment-wise, I'm sort of stuck right now. I haven't started IL-2 yet, I wanted to recover from the radiation first. Now I'm thinking that I'll get my usual scans very soon and see what's going on in there. If there's anything new, or if I'm stable, etc. If everything is more or less stable, what I want to do is this; I want to resect the spleen (if there's anything left in there) and the three subcutaneous tumors (I think at least two of them are dead anyway, they seem to be shrinking away and the one that isn't dead isn't growing). Then, wait for the three-month scan of my liver to see what the radiation did. If we have stability or shrinkage, then I'm going to push for SRS of the remaining three small liver mets.If there's anything new, then I'll do IL-2.I'm also going to get a brain scan to rule out brain mets. Because that changes everything.One thing I DO notice since the liver radiation is that the breathless feeling I would get (which we assumed was the tumor compressing the inferior vena cava), has gone.So... hope and pray for nothing new and that I can find my way through this by doing it MY WAY.[...]



I've met the funniest people recently...

Fri, 22 Sep 2006 12:59:00 +0000

I don't know what it is, but you often meet the strangest people in cancer centers. I've noticed it more recently lately because I've been going there so much. In fact, it was Jim who pointed it out to me first... we were sitting outside in the car one day and he mentioned it. I told him that maybe because they have cancer, they feel like they don't care anymore about what people think. But it wasn't that. I looked around and saw what he meant. Some people are just funny.I guess it's just like anywhere else. People are people, you know...? I'm not being mean, just sharing that thought. Maybe I'm one of them. Heh.To me it's like this; I have melanoma. It's easily one of the most aggressive cancers out there (yes, it is). I have this freaking 11cm tumor in my liver - not to mention the smaller ones that we haven't treated yet - not to mention anything new that I know nothing of yet. What a thought. I'm pretty freaking sick, people. There, I admitted it.Do I walk around acting like I'm sick? No... of course I don't. I WANT to be well. I'm not well, but I want nothing more than to feel like the old me again.What I've noticed about some people is that they ACT sick... I don't mean to sound horrible, but they do. And some people who are REALLY sick, you'd never know. I've met people who think that they're the only ones with cancer. I've met people who smile nicely even though they know they're dying. I've met People who are having radiation for stage I breast cancer who think they're sicker than I am because I just smile nicely, am able to find humor in most things and still have my hair (at this point anyway).You know... when I did that four months of chemo, it wasn't exactly a picnic. I felt like Hell for the week that I was on and it took most of the second week before I felt "normal" again. Normal being nothing like normal really is. I puked at times, had nausea, a horrible smell that I couldn't get rid of, my feet burned and I couldn't sleep. Did I complain? Not really. I just did it. That's four months of chemo, folks. It sucked, but I made it work. I still (sort of) cleaned my house, I still drove my kids to school, I did everything I could possibly do to make sure that I was still me.Because for me, still feeling like myself was what got me through. It was the same with the radiation. I did it by being ME. I never went to an appointment looking like crap, even though sometimes I wanted to, especially at the end. But that's my survival face. Put on the mascara and lipgloss, do your hair, and GO FOR IT.Put your face on and kick melanoma's arse out of the park.To me, the psychological defeat of 'giving in' is unacceptable.I'm not saying that it has to be that way for anyone else, it's just MY way. It's my way of letting mel know that I have cancer, cancer doesn't have me.And it won't.I mean, yeah, it might just kill me, things aren't looking fabulous for me at this point. But it will never HAVE me. Never.I've spent a lot of time recently just laying around, sleeping and thinking. I think I'm finally gaining some perspective on my situation. I have to tell you, forget the treatment and everything else, it's that perspective which is the hardest part to deal with.But you need it. It's not like I've stopped fighting, or ever will as long as I have breath in my body. But I am finding peace.Finally.[...]



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

Tue, 19 Sep 2006 11:57:00 +0000

I've never been so tired.

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

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

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

How can this disease happen to people?

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

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

I'll write more tomorrow.



In the home stretch!

Tue, 12 Sep 2006 15:29:00 +0000

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I only have 3 more radiation treatments to go!

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

Yeah!!

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

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

So... what to do next?

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

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

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