Tuesday, December 26, 2006

Christmas and cutthroat UNO.


All in all, I would have to say everything went great yesterday. Everyone seemed to have a great time, especially the kids. By midmorning, it looked like Christmas had thrown up all over our living room. Alannah got herself a new keyboard, an iPod, enough lip glosses for an army of pre-teen girls, and the arbitrary token couple of peg-legged dolls known as Bratz. Ryan ended up with an arsenal of new stuff to torment the cats with: a radio controlled Ram truck that is only a fraction smaller than our Durango, a nerf dart gun and a roboreptile that apparently "stalks" prey...Oooo boy...the cats are gonna LOVE that one, I'm sure...

We all had a great time watching the kids play with their new stuff, and had a nice dinner together, sufficiently stuffing ourselves until we burst on lasagna and all manner of cookies, candies, egg nog....

Then it was on to our new gift that had been marked "to all of us": Uno Attack. Let me just tell you that this game is a laugh riot. At least in our house with our family.

A regular game of Uno can bring along with it no short supply of laughs, despite all the scheming, plotting and sabotage that is deliberately brought down on those least suspecting victims. But this new game takes it to new heights. In addition the people playing on either side of you plotting your demise, a contraption now barfs out random amounts of cards with the tap of a button. In the classic game, if you came up short the card you needed, you only had to live with taking one card from the draw pile. With this new style, you may get lucky. You could hit that button and maybe no card will come out. Or maybe not. In most cases, you tap that button and anywhere from 2 to 9 (or more!) cards can shoot out at you.

Where before, the most eeeevil card in the game was that wild draw 4 card, with this one there are a couple to be on your guard for: the wild "all hit" card that when played, means everyone at the table has to take their turn tapping that button; the hit X2 card, the wild hit until the dispenser spews forth some cards card, and the dreaded TRADE HANDS card. This card has got to be the single most hateful card in the deck. And it comes in every color.
When played, the person who was lucky enough to hold it can switch hands with any person at the table. You could be sitting peacefully, minding your own business yet trying your damndest to conceal your excitement (and your two or three cards) when outta nowhere you are being told to swap hands with someone across the table who has 30. It gets pretty ugly. Only in a lighthearted way for most of us though. Of course, I gotta admit, there were a couple of hairy and borderline questionable moments for a couple people a couple of times.

Seriously, we all had fun, and before we knew it, everyone had gone back home and we were left to pick up the wreckage of toys, boxes, wrapping paper and little orange darts from the floor...and walls...and a couple pictures hanging there. We were wiped OUT. But only in the best way you can be after a nice day. We dropped like a ton of bricks, ready to relax....

That is, until Ryan started firing off foam nerf darts at one of our cats in the kitchen. His michievous little laugh gave him away. When asked why he was shooting at the cat, he replied with a "but the gun just shot it out that way." Four times?

Yeah right.

Saturday, December 23, 2006

Just some thoughts....

As the holidays are getting closer, I have been thinking more and more that I need to check myself at the door and re-adjust my thinking on so many levels about so much....

I have so very much to be thankful for, and at the risk of sounding cheesy and cliche, I have this moment...Right Now.

Yesterday, I got to loose the drain! I literally felt the urge to start skipping and doing cartwheels out of that interventional radiology floor. If you have ever had one of these buggers, you know exactly what I mean when I say I felt a HUGE relief once it was gone. I was in a great mood, and I got to thinking about how I have to focus so much more on the positive than I have been lately....
So much of these last couple of months I have spent worrying about the what ifs and worst case scenarios that I ran myself down. I was WIPED OUT and realized that THIS has got to STOP....and sooner rather than later.
That, plus I got this LiveSTRONG survivorship notebook in the mail the other day, and all the survivors' stories inspired me to get off my ass and start looking at the brighter side...I got there before, and I know I can do it again.
Right now, I have my kids, my husband and my friends who all mean the world to me and I have this day. Today, and the hope that there will be a long string of tomorrows after that.

I got way too bogged down worrying about what might happen down the road, when all of that was and is completely out of my control. I can't spend time worrying about whether or not I will advance and what my odds are, because in the end it is all about luck (or lack thereof) and most of all, it is beyond my control.

To get out of this slump, I know I have to let this go....

Right now, I am still stage III, and while I will never stop recognizing how dire that is in its own right, in and of themselves, the sub-Q, in-transit and nodal recurrences I have had are not life threatening. Organ metastases are.

And while my odds have gone up of that particular scenario someday happening, it is still a HUGE random crapshot that is not in any way certain to go down.

So for today, and hopefully as long after that as I can, I refuse to dwell on those worst case scenarios....

Ok. Enough of that. It is the holiday season, and there are so many reasons to be thankful for all that I have. On Christmas day, for the first time in years, everyone can come over to our house for the day. Other years, this would send my stress level through the roof. My mom and dad, my sis, my mother and father in law...all in our house at the same time...But not this year. This year, I think it is great! They haven't all been able to get together and just hang out together in years.

Also, stating the obvious here, but as my kids' level of excitedness escalates with each day, it is hard to not soak that up. It rubs off...there is no way around that. They are lit up from the inside out. There is nothing better.

Found this picture above of a pug in a santa suit and got to thinking about the funny and cute, but at times very naughty little pug we had adopted for a short time, Goofy. We had him for a month at the end of the summer, and at first, he was a dream dog. He was 16 months, already housebroken. He was a clown, funny and friendly as hell. Then he started to act OUT. And that is putting it mildly. We had to give him back....We were heartbroken...especially the kids, who quickly fell in love with him. We agreed to get another one. I know the kids would love to see a pug on Christmas morning, but with all these melanoma setbacks, surgeries and treatments (coming up) it wasn't possible to get a puppy before spring sometime. Just wouldn't work to have a puppy tearin' up the house among other even worse things with all the treks to Philly I will have to make for the vaccine trial either.

I even caught myself thinking at one point about putting off the puppy in the spring too, for fear that things will never be "normal" around here. But hell, when are things ever normal? I refuse to let myself worry about things that may never come to pass and just DO. Live now.

I came across this picture of Goofy. My kids want a pug puppy, baaaaaad (imagine this said in only the way a child can manage to say it). I would love one myself. And aside from the obvious, that strong pull to make my kids happy; to see them light up, it will be another thing on that long list of things that I will call Affirmations of Life.

Monday, December 18, 2006

Gone Crazy.....back later.

After thrashing around in bed trying to go to sleep for two hours...watching the minutes tick off repeatedly on my alarm clock, I staggered out of bed, bleary eyed and in a semi-frustrated rage over my brain's refusal to unwind once it is time to crash for the day.

Instead of the thoughts tapering off, allowing me to relax and get drowzy, they come at a rate of a thousand per minute revving me up into a state of total agitation. My mind runs in circles...

This melanoma shit is doing a number on my sanity, and I realize that if I don't come to grips with it soon, or at least get a good night's sleep, I may very possibly have a psychotic episode.

Well....Maybe that is going a little bit too far....

But my moods have been fluctuating wildly; swinging in an arc from the denial state of burying my head in the sand like an ostrich to the completely neurotic...like Chicken Little.

These are the kind of head games that melanoma can play....making you feel like a rapid cycling bipolar patient in need of some good head meds at times.

Feeling a little dizzy, or having tendencies too loose my sense of balance? While remote, it isn't too far a stretch to entertain the idea that melanoma may have seeded itself somewhere in my brain...Doesn't matter that I have been a klutz of epidemic proportions since I popped out of the womb. New lumps, bumps or even something as bland as a large zit...I FrEaK out until they disappear. Any new ache or pain....Yep. You get the idea.

Especially the new lumps and bumps. I ride that storm of raw white hot panic until the day those buggers fade into oblivion.

Equally strange is how your doctor could deliver the news that the culprit of the problem could be something considered moderately undesirable to most, yet we breathe a sigh of relief:
"It appears as though you have a bleeding ulcer. You need to cut out the stress and stop worrying so much."
You: "Oh Thank GOD it isn't melanoma!"

*note: I do not have a bleeding ulcer; just giving an example here.

In any case, last night at two o'clock in the morning I was fixated on these relatively harmless looking little bumps on my abdomen that are most likely blocked pores or some equally harmless thing and NOT subcutaneous melanoma metastasis....

Does my rational mind ever take over when I am trying in vain to calm down and get sleepy...NOOOoooo. Not at 2:00. Not at 3:00 either. Hrumph. It sets off a ripple effect and the next thing I know, I am worrying another pont to death....The fact that the odds are stacked almost three-quarters against me that I won't live to see my daughter get her driver's license at 16, or my son leave elementary school at 11.

I try like hell to shove the thought aside by telling myself that there was a LESS than 2% chance that I would get this shit in the first place, so you would think it wouldn't be that far of a stretch to land in that 26% of stage IIICs who live for five years...

But Noooooo.

My mind keeps working these negative thoughts over and over, worrying them to death until they are festering in my brain like a splinter that has embedded itself too deep and can't be dug out.

Then, whacked as it seems, I guilt trip myself because there are people who are facing much steeper odds and have a LOT more to worry about, and they don't come unglued half as often as I have been since this latest recurrence....Chasing shadows and wind; worrying about things that have not come to pass, and may not ever (hopefully!).

My mind runs that gamut from fear and panic over my own situation, to frustration and anger over how little awareness there is about melanoma.

Facts floored me when I was first diagnosed and still do now...

Melanoma is the #1 cancer killer of women age 25-29; #2 after breast cancer for women age 30-35.

There have been no advances in research or effective treatments (at least proven ones) in at least 30 years.

In the more advanced stages, there is NO CURE.

If you need proof, ask any melanoma patient beyond stage I if they can EVER get life insurance or any melanoma patient if they can ever donate blood or be an organ donor.

This shit can come out of nowhere on some nondescript bright blue Saturday morning 8 months, 3 years, or even 10 years down the road and blindside you.

What freaks me out and rips me out of sleep at night soaked in sweat and trying to catch my breath from some hellatious nightmare is that if I recur this time, it could very realistically and probably be at stage IV.

Damn. I have got to stop this tirade before it gets any more out of control. Man...I have a way of sending myself into a neurotic tailspin.

I will think of a couple more of my heroes from MPIP who are both stage IIIC and holding for a few years now: Bridget and DebbieH (may they both stay there, NED, forever:)

I very possibly could too....

While I am psyched about this vaccine, I am also realistic. Not a single element of this is in my control. It is all no more and no less than a crap shoot. I have to relinquish this need to be in control in order to gain any semblance of peace of mind. This...is so out of mine or anyone's control.

Positive thinking, herbs, supplements, guided imagery, conventional chemotherapy, eating all the right foods....Not a one is strictly proven or guarranteed.

We are all just scrambling to up our odds bit by bit. Doing everything that is within our power to hang on and fight.

I know I will do anything I can...

I have doctors willing to go the extra mile for me and a life worth fighting tooth and nail for. I married the best friend I have ever made and gave birth to two beautiful kids. I intend on putting up one hell of a fight in whatever way I can.

But that doesn't mean that there isn't a part of me that isn't petrified.

I do know this: I won't give up and I don't PLAN on checkin' out anytime soon.

And as for eating right? I say bring on the pizza, hoagies, bacon double cheeseburgers and a fat 'ol slice of cheesecake.

Hey. You only live once.

Wednesday, December 13, 2006

Awwww....What the h*ll?

It appears as though I have been hit by some spam here in my comments section...
To that, all I can say is WTF?!?! Is there any single area on the computer (or otherwise for that matter) safe any more from spammers, money swindelers, scams, telemarketers and on and on...and on...?
And whatever on God's green earth happened to that DO NOT CALL LIST that our government offered us to sign up for that would keep all these money grubbing and panhandling telemarketers at bay? There is now all manner of crap, baloney and bulls**t coming up as "out of AREA" or unavailable on my caller ID. Hrumph.
For a while I even remember MPIP being bogged down with spam posts for Viagara among other things. Good LORD. This was a little while back, and now, precautions have been taken to ward the spammers off. A short code of letters embedded within a bunch of dots that apparently can only be deciphered by the human eye (not a computer) has to be entered at the end of each post. Sometimes *I* in my still somewhat youthful state cannot make out some of these letters. Oy. But it worked. At least so far....
But on someones personal blog? Spare me. Sadly, though I can't be completely sure, I can say with some level of certainty that I am most likely not the only one who has been hit.

Okay...nuff griping about that for now. I am just a bit surly and irritable today for some reason. Could possibly have something to do with being in the throws of PMS; wolfed down half a can of Pringles yesterday and the day before, it was the remainder of a bag of those new Spicy Sweet Chili Doritos found only at WalMart...at least for now, I hope--Those things are AWESOME!! Doritos oughta be a food group in and of themselves! Ha!

On my way to Philly again today to get my DTH injection. I have to go back on Friday to see if I have a reaction. Just this one last hurdle to clear before I know for sure if I can participate in this vaccine trial...Crossing all my fingers!
Anyway, in my PMS induced state of ravenousness (is that an actual word?) I am currently viewing these very frequent trips to Philly as a treat...Across the street from the hospital is a Primo's Hoagies. Home of the best hoagie I have ever eaten. My husband will agree, along with several of that hospital staff whenever we have mentioned eathing there for lunch. I know subs and hoagies are like 1500 calories, and I will probably be starving myself with only yogurt and soup for days (vain as hell, I know), but my mouth is watering just thinking about it....

Tuesday, December 12, 2006

Ahh...Christmastime.

I just can't believe that the holidays are already here again....Humbug.

Nah. Seriously. I really do love the Holiday season for more reasons than I don't...I can just never get too excited over the prospect of winter, snow (UGH) and freezing my lilly white ass off...Which, let me tell you, does NOT take much with me. Temps slighly below 45 degrees can usually do it to a fair extent.

I know I should be doing cartwheels on our front lawn and counting my blessings, buuut...
Things have just been a blur lately. Winter has come waaaay too fast....

One thing I know I can get psyched up about this year is the fact that most of our Christmas shopping is DONE!
My mother and father in law kept the kiddos for a weekend so both Ed and I could sneak out and get all the kids' presents bought and wrapped...
While we were at it, we went ahead and put the tree up. And this was all on the first weekend of December...Unreal around here, and that is putting it mildly.
There have been some years where we didn't get around to putting the tree up until during the week right before Christmas Day, and have still been running around getting the presents to put under it the night before...
To say that this puts everyone on edge would be the understatement of the century. Crabby, grouchy, surly and bitchy would come pretty close to summing it up though.
Not this year....I was breathing a HUGE sigh of relief because we could just sit back and relax. The time of gritting our teeth, taking as HUGE a breath as humanly possibly and braving the psychotic spectactle that poses as any retail location here in tax free Delaware is now behind us. Thank GOD. I know that is far from having the right spirit for the time of year....but there is just no way to prepare.

Speaking of Christmas shopping, or even just getting out and about with any destination in mind this time of year...I can't be the only one who has noticed that quite a few people actually get mean-ER and rude-ER the closer that Christmas approaches. What's up with that? I guess an almost unmanageable amount of stress does funny things to some people. Stress and what maxes it out being relative to each person, of course.

Easy for me to say now, since I no longer have to hit our community Target, nevermind the MALL.

Then again, I may have spoken too soon...I have kind of been procrastinating with making out all my Christmas cards. At this point, I am hoping to get them to everyone before the New Year. Apologizing in advance, profusely. My head has not been screwed on quite right lately...It may have even detached at some point while I was sleeping and Ed may have had to re-attach it, but didn't put it back on properly. Who knows. Just can't seem to get that thick cloud of fog that is enveloping me to clear yet....

Holy MOLY. Gotta get those cards sent out. Oh well...guess we can't have it all, and a person can never totally escape their general nature or tendencies.

Yep. Last minute people around here.

Monday, December 11, 2006

Want some cheese with that whine?


It's been a while since I posted something here; just felt pretty brain dead lately, I guess.
Or maybe I just needed another period to cocoon or decompress, not sure which.
I started this blog simply as a way to vent about anything and everything melanoma related or otherwise that completely stressed me out....
Lately, it seems like all I have been doing is griping, whining, moaning and complaining...so much that I can't stand my own thoughts the majority of the time...At least since September, anyway.

I wonder at times where I went. I can't even remember now what I was like before melanoma blasted itself into my life...that blissful ignorance is gone. That innocence is lost....
It has been replaced with a new reality. A new normal.

In a minute, I am going to force myself think of all the good ways that melanoma has changed my life, but first, I ought to give a small update on what has been going on with me for those couple of you who are wondering and can actually stand to read my rambling ;)

Last Thursday I had a drain installed into my left lower gut to drain a honkin' seroma/lymphocele that had formed where my pelvic and abdominal lymph nodes were removed. Despite a couple of scares getting started, it all went off without a hitch; at least once the nurses at the interventional radiology place realized the horrified expression on my face was related to the fact that the tube was NOT supposed to be placed in my lower back. Over 1 liter of fluid was drained from that area...Yep...more than a liter. Good LORD, no wonder my back was starting to hurt and I felt like I was almost 4 months pregnant. Now I just have to stick it out until the drain is pulled and hope like hell that that lymphocele doesn't come right back...

Okay. On to all the good things that have come about in my life whether directly or indirectly because of melanoma:
(Some of these are pretty standard and cliche, but don't knock 'em because they couldn't be more right and true)

I have had the honor to meet, whether through MPIP, email or when extra lucky--in person--some incredible and amazing people that I wouldn't otherwise have met if it weren't for this nasty diagnosis.

I have found out more people care about me (I mean really care) than I ever would have imagined. Kind of sad, actually, that it takes something negative like a cancer diagnosis looming over a family like a black storm cloud in order to let true feelings out. I love my mom and dad to pieces, but sad to say, I grew up in a house where physical affection like hugs and stuff just weren't doled out very often...And saying I love you...well that was something that was just 'implied.' Before I became a stage III melanoma patient, I think the last time my mom said "I love you" even when ending a phone call was on September 11, 2001, and I'm not kidding...before that I think I was 5. I know, I know...cry me a river, right? *slapping myself now*...Now, she says it a LOT more often...and that is an amazing gift.

Melanoma and the very real possibility it has of terminating my life prematurely has woken me up to LIFE and all the things within it that I had always taken for granted before...The most important of which are all the people who mean so much to me.

I have learned to fully appreciate each day, week, month, and especially year, I am given for the gift that it truly is. This part may be a little overkill, melodrama, etc. for having stage III since I know all too well that it could always be worse, and there are people dealing with so much more; a far larger threat....But still, I force myself to think of the worse scenarios in order to remind myself to appreciate more where I am right now. When all else fails, I can always slap myself around a bit when I get too neurotic and morbid.

Anyway, those are a few of the things I could come up with. For the most part, most of us dealing with melanoma know that it brings along with it more than its fair share of crap. Today, I needed to think of something positive.

Even if only to remind myself.