Another Funky and wierd day.

Though it isn't really relevant, I thought I would post a picture of my two kitty cats. These guys have soaked up their fair share of tears along with bringing me (and everyone else in my family too) a whole LOT of laughs and happiness...
Buzz (the one on the right) has been my cat since I was 22 years old. He is now 12 years old...gettin' up there for a cat; an old man...but still so cool. People always tell me he acts more like a dog than a cat, he is so friendly. You can't tell much from the picture, but he used to be a whopper of a cat when he was in his prime: a 20 pounder, which is considered pretty ginormous in terms of size for cats. Sick, I know...but at one point when I was in my complete trainwreck state of mentality over this melanoma, I actually made the morbid statement that I wondered if I would outlive this old boy. What was I thinking?
Jada is the one on the right. She is a total nutbag. She is now 5 and she tears around the house like she is stoked up on catnip (also referred to as kitty marijuana by myself and Ed) most of the time. But she is a Bengal, and that kind of goes with the territory. Jada and a laser pointer can be the source of quite a few laughs.

Anydamnway...On to my whacked out day. Over all, much of it I could safely consider surreal.
This morning I was walking my kiddos over to the bus stop as I would any other morning, and my neighbor strolled over to where I was standing. She looked very upset, and I soon found out why. She told me that she was now part of what she referred to as mine and Mr. Jim's (another neighbor of ours) "club"....
I didn't have to ask what she meant, but I still stood there in disbelief and and shock and said, "No...God..."
She is only a couple of months younger than I am and she has two little guys, ages 4 and 2, and she just found out she has breast cancer....

Unreal. That makes three of us with some type of cancer or another in just our immediate vicinity of houses...

Is it me, or does it seem like cancer is becoming more and more common everywhere you turn? Maybe it just does when it hits more close to home...Maybe things really do travel in threes...
Who knows...But shocking all the same.

Had another appointment up in Philly today with the research nurse I will be working with for the vaccine trial. This appointment was a spur of the moment thing, since my need to have a third appendage attached (the JP drain) is kind of throwing a wrench into the works with my vaccine schedule.
Because the only time the procedure for the drain could be scheduled was next week, my anergy panel (skin testing) appointments had to be bumped up to today and Friday...(I am feeling quite boneheaded lately, so maybe I already mentioned this before) *Gone Pshyco...BAcK lAteR*

Anyway, aside from those blasted little skin bubbles made from those skin injections stingin' like a *insert expletive here*, (aww, hell, who am I fooling...I have been known to use my fair share of obscene language)...Things went pretty much as I expected them to: SNAFU--situation normal: All F**ked UP.
It turns out that the nurse is going to have to contact AVAX technologies to see if they are going to be sticklers about my having a drain in place while on the vaccine injections. Apparently, and this makes sense to me, they need my immune system to be in PERFECT shape for this study. If I have a JP drain, then there is the risk of infection, and therefore, a threat to my immune system.
As she told it, if they are sticklers, they may pull me off the trial. At this point my eyes are rolling up into my skull so far that I am not sure they will come back down into normal position again.
But... if they are more lenient, they may let the oncologist and nurse I am working with just bump everything back another week.

The other thing that she informed me they are hoping for is that the drain will only have to stay in for a week. At this, I was trying to hold back a laugh.
Let me just interject here by saying I can't imagine that having a drain in for only a week will do too much to get rid of this grapefruit-sized seroma/lymphocele bugger that I've got. Even if it does drain what's there...Will that be the last of it?

Soooo. On the one hand, I may quite realistically and possibly loose this opportunity to have this promising treatment that could bump my odds up from 26-27% five year survival to 45% (the vaccine)...
Or....All these different departments have to all cooperate, communicate, rigidly choreograph each and every next step, get rid of this lymph fluid (basketball in my gut) which is a threat to my participation in and of itself as I understand it, and everything has to come together just right and fall perfectly into place at all the most opportune times...
Should I play those odds?

I am still hoping against hope that it will all work out...

Am I living in an alternate reality here? Quite possibly....But one thing I know for sure: I have a whole buttload of phone calls to make tomorrow.

A Funky Day

Well...Yesterday I had my first appointment with the oncologist who is heading up the M-Vax vaccine trial, along with the research nurse who is assisting him with it all.
First I will say it is going to be a hectic couple of months! Through February there are going to be quite a few treks to Philly!
Tomorrow I will have to go in for the anergy panel. The nurse explained to me that this is some skin testing for a few different things (tetanus, tuberculosis, etc). Two days later (Friday) I have to return to see if there is a reaction there.
A couple of weeks after that, I go in to have some of the vaccine that was made from my own tumor cells injected into my forearm. This will be another test to check if there is a reaction to three different injections in that spot: One with the DNP modified melanoma cells, one with unmodified but de-activated mel cells, and the other with only a sugar solution. Then two days after that, I go in to check for a reaction to any of those injections.
Around December 27th will be another visit, I believe, with the nurse.
January 2 will be the date set to have the IV infusion of Cytoxan, which is the chemo agent used in between vaccine injections. The doc said I could very possibly experience some nausea and vomiting and feel a little sick for a couple of days, but overall, none of the more serious side effects that would be experienced at a higher dose.
After that, I see the oncologist once more, and after that, one vaccine injection every week for six weeks. They get a little further apart after that up until the six month mark. Then, if there were enough cells to make one more booster shot of vaccine, I will receive that then.
At the same time, I will be getting a CT scan at the three month mark, then six months later.

But first....I found out I gotta have another JP drain "installed" to drain a sizeable lymphocele/seroma that has refused to budge since my deep inguinal node dissection. Guess after having a "bumper crop" of lymph nodes removed, as my surgeon put it, that fluid has had a hard time finding a new route to follow. This will all be going down next week. The 5th for pre-admission stuff, then the 7th to have the drain put in. Yeehaw. Not.

However, to be honest, this thing is pretty good sized, if I do say so myself...and I would not be exaggerating to say that at times, it has felt like I am 4 or 5 months pregnant all over again. Sooo, while a having a JP can be no picnic in and of itself, I am just looking foward to taking care of this bugger and hopefully getting rid of it!

While I was there, the doc also had to get a thorough history of my melanoma case with dates, surgeries, etc. along with a past medical history of any other diseases or conditions.

Let me just interject here by saying that this always cracks me up when we get around to the past medical history. Whenever I answer more and more questions with a "No." I get that bug eyed look of shock by both docs and nurses alike. Diabetes?-No...Lung disease?-No...Hypertension?-No...and on and on...and on. Previous surgeries aside from those I had performed for melanoma?--Nope.

Not even an appendectomy or tonsillectomy as a kid?

No. I haven't even had my wisdom teeth pulled....But then again, I am 35 years old. How many health issues does the average mid thirty something have?

Aside from the occasional migraine, I am healthy as a horse. Or should I say "used to be." Although I don't look it and for the most part anyway, don't feel it, and though I definitely don't want to acknowledge it, I guess having cancer that can and has spread to some extent (still regionally) puts you in the SICK category.

At least by some standards anyway.

As I said before...I prefer not to acknowledge that.

For the most part, I feel great...and that is what counts. I am very aware that things can always be worse, so I am going to take advantage of this time while I can. Hoping like HELL that worse is a bridge I will never have to cross.

With all the formalities out of the way, we had to move on to bigger but not necessarily better things. Turns out that I had to have a full/complete physical while I was there...

And I mean COMPLETE.

That doc had to do things I had never even begun to anticipate.

Disclaimer: Do NOT proceed if you are more sensible or easily offended in any way.

First it was just the run of the mill vital signs and listening to my lungs along with checking my lymph node basins. Then he moved on to checking my eyes with a lighted scope. This part was funny because the doc instructed me that under no circumstances was I to look directly at the light. He then told me to look at my husband who was sitting in the chair across the room.

Ever have to stare, unblinking, at someone and try not to dissolve into laughter? Well...we were cracking each other up, which I am sure was not doing anything to help the doc any. Of course, it did not help that Ed was making faces at me ;P

The doc also, predictably enough, had to examine the virtual galaxy of moles to be found on just about every skin surface covering my body, then asked if any of my moles were changing. This, after being to countless dermatologist visits, is pretty run of the mill in the life of a melanoma patient.

The semi-naked chicken dance without the dancing...

Somewhat humiliating in its own right, yet something most of us have been forced to adjust to and accept as part of life now.

I mention that I have moles everywhere upon the doc's scrutiny of a mole on the inner part of the sole of my right foot. To which my husband pipes up brightly, "Even on her rump!" Snickering.

Ahhh. Lovely.

To be fair, we share a similar sense of humor and most times, keep each other in stitches.

Shortly thereafter, the doc instructs me to roll onto my side because he has to check my "backside" as he put it. I have no clue. I am thinking about that mole on my left @$$ cheek and how hard it will be for him to see it if I am lying on my left side.

Was I DEAD WRONG.

I hear the word hemoccult, digital and rectal called out to the nurse and with a very sharp intake of breath, a gasp that I am sure people heard two rooms down, and eyes literally popping out of their sockets, I stiffened up like rigor mortis set in prematurely.

Let the FUN begin.

Doc turns to my husband who is trying to choke back a laugh and says, "You don't have to remain in the room for this part of the examination."

Ed says: "I'll just turn away, but I ain't missin' this for the world." Choking back another laugh.

I fall back onto the exam table with a thud along with a hefty dose of dread and joke, "Yeah, YEAH...Laugh it up!"

As I said in a previous post: Sometimes it ain't pretty, but this definitely stretches the boundaries of that statement. Of course, when we were released to go home, both Ed and I were cracking jokes and laughing about the whole ordeal. Damn...they were thorough...

MAN....I guess the protocol is pretty strict for clinical trials...Heheh. I assume they just want to be sure in every way humanly possible that you are CLEAR.

Just another small price to pay for keeping on top of the fight.

But it goes without saying that the next time I hear the words "digital" or "rectal" in the same sentence again it may take a slew of blow darts, possibly a tranquilizer gun, a whole team of medical personell or even a lockdown on that cancer treatment unit to keep me from running for the hills.

WooHooo. Yeeeeeah.......NOT.

Bummed and Frustrated...

I have never been the best at relating to people...
Actually, socially inept is a far more accurate and fitting description.
When I was younger, I was the loner...That is, until high school when I befriended a gang of party girls with wild and rebellious streaks, but that is beside the point.

I just have a damned hard time feeling comfortable around people who only see others in terms of black and white. Good and Evil. Right...and unforgivably wrong.

All this upheaval between so many people on MPIP over religion has gotten me thinking too much about too many things that I shouldn't be worrying so much about lately.
I had been away for a wedding and didn't see every fact in glaring black type on that screen; the way it all transpired. I came in a day late and a dollar short, as is so often the case in my life. I didn't see or read the hurt and anger that one particular post caused for so many good people...This post was made by the daughter of someone whom I had admired greatly before all of this...Now, to read the recaps of the whole ugly event, needless to say...it upset me too.
To imply that a whole bunch of cancer patients, stage IV cancer patients or any other for that matter, would just rot in the fiery pits of hell if they didn't believe in Jesus Christ as their savior is just tactless, hurtful and just plain wrong.

Before and up until that point, I can actually understand why some of the Christian posters who are regulars there were getting a little upset. The thought of censorship, or more specifically, OVER-censorship, can have that effect on people who have come to believe in freedom of speech...freedom of religion, irregardless of what is at risk of being censored or policed. But there is a line that is crossed and a point of no return reached when insults and hate are spewed forth at people like so much vomit.

In any case, I must confess...I do believe with all my heart and soul in God, and Jesus. This is my choice. My free will. Do I care so much as to be insulted or offended by others' belief systems? In a word, NO. What other people choose to believe is their own personal choice. Their own business.
Even I get put out by people who come across like Holy Rollers and Bible Thumpers, spewing forth religious dogma with threats that any living soul who does not share their particular set of beliefs will spend eternal damnation rotting away in Hellfire.

Hell, I hide from the Jahovah's Witnesses who come knocking on my door from time to time.

But do I think less of them as human beings? No.
Do I feel the need to sling a hefty dose of hate in their direction? No.
Do I feel a strong level of hatred toward the until that point, fairly loved poster, along with her daughter, who offended and hurt so many on MPIP? No.
I couldn't possibly.

Because no one....Not a single blessed one of us is without a fault. No one is all bad or all good. Was I upset and at the very least, mildly angry once I finally had more of the facts and found out what went down on MPIP? Yes. I can be furious with something a person has done, but still find it within myself to not feel hate toward the person....To still find other ways in which I still feel respect for them, despite their faults.

As for the silent majority whom so many are getting just as angry with...Let them be silent. Maybe they are just like me...Not as skilled in the art of debate, and found severely lacking when forced into a situation of verbal conflict.

I am a lover of peace and harmony. Terrible at conflict. Always looking for the good, in people and in things.

Call me a Pollyanna if you will, but you couldn't be farther from the truth. Just ask my mother. If given half the opportunity she will offer up any number of examples of how blemished and flawed...even negative I can be.

Bottom line...
I just can't understand, nor do I want to, how quick people can be to jump on the hate parade. To be so all or nothing in their feelings and opinions of other people as if the "offending" person isn't more than two dimensional. As one poster put it so well but not in the exact words, Christians especially, should practice forgiveness, tolerance and acceptance of all people. Hell, all people should. Those things are the keys to true kindness.
These are the things I was brought up to believe by my parents. It is how I was raised.

I am not a "born again" Christian. I was baptised Catholic and raised Episcopalian, but to be honest, haven't been to church since my son's Christening back in 2001. Heheh.

Then again, someone could say I will burn in Hell for not going to church every Sunday. Where does it end, and who the heck are we to decide?

Anyway, there is my rant for the day for whatever its worth (which ain't a whole hell of a lot ;)

We danced....

And danced....and danced.
The wedding was absolutely beautiful.
My husband's cousin, who is a couple years younger than I am, just got married this past Friday. She and her new husband make a wonderful couple. Two great people coming together to share the rest of their lives through whatever life has in store for them...She was stunning, the wedding was beautiful and amazing...and we were there to celebrate with her and the rest of our family...and for that, I am so unbelievably happy and thankful.
We laughed...we cried...and if I haven't mentioned it enough, made sure we got our asses out there on that dancefloor....numerous times..HAH!
In a word, it was incredible.
I did have a few people show concern and worry over how much I was or was not propping my foot up, and I love them so much for it...and of course, a few times I was a good girl, so I did...
But that night...it was all about fun...fully being in the moment. Living.
I was telling a couple of our loved ones that I did not care if I paid for this tomorrow...it was so worth it!!
And to be totally honest, I did pay for it...but only a little...and as I expected it to be, I still thought it was so much more than worth it.
Take THAT melanoma!!

Admiration and Inspiration

I am dedicating this entry to all the courageous melanoma patients on MPIP that are waging personal battles of their own...
I would be remiss if I didn't mention here, that while I can get very bogged down in my own worries (in fact, hate myself when I do!), there are too many of my fellow melanoma warriors that are facing far tougher battles....Whenever I need a reality check, or even a smack upside the head, I think of each one of them...
All of them brave, whether they believe it to be or not, positive, strong....Amazing.

Sheila: fighting so hard, yet always smiling; she and her husband so postive.
Heather: no matter what punches melanoma throws at her, she always seems to come up swinging; tough as nails and funny as hell!
Sarah: I have read her blog too, and have found out that she too, has an indomitable spirit in the face of all she has come up against.
Charlie: I have read all of his posts religiously since my own days at MPIP began, and have grown to admire him...He is an incredible man.
These are all stage IV melanoma patients...and they are just a few of many, many more...Bill and Charlotte, Randy, Rusty and Yen, Carole....I am in awe of each one of them and their caregivers.
And to all my fellow melanoma patients and good friends who are NED (no evidence of disease): Amy, Sue, Carver, Carole, Lisa, FAith, Kathie, Debbie, Bridget...I wish each of you only more of the same...NED for a loooong, long time. May melanoma NEVER darken your doorsteps again!
Each on of them fighting so hard, now or in the past, is an angel and so much more than an inspiration.
MPIP and all the people there have made a HUGE impact on me.

Melanoma has a face.

It is the loving husband or wife, young mother or father, young adult just starting out in life, and heartbreakingly, sometimes even a teenager or a child...

Victims we are not.

Melanoma cannot break our spirits; whether or not it takes from us our bodies, it will never win this war.

Well, Shitfire and save matches...

I am giving myself a little more free license to bitch, gripe, whine and complain for the moment. As far as I am concerned, it is better just to get that stuff out of your system...Crucial, in fact, to my ability to clear my head a bit and move on; make the best out of this new news I have been given.
Well...my surgeon called yesterday with the results on all the lymph nodes that were removed from my deeper pelvic area and abdomen. I about passed the hell out when he told me there were 31 lymph nodes removed. Yes. 31. That doesn't count the 18 or so that I already had yanked out of my upper thigh/groin area back in May of 2005. So now I figure I am down damned near 50 lymph nodes.
YIKES.
Then he lowered another bombshell on me by telling me that one had melanoma in it. He did go on to say that on the bright side, out of 31 lymph nodes, only one had melanoma in it...That's all good, buuuut....
All I keep thinking is, Good LORD...it is now outta my leg. Holy Hell...I am now stage IIIC; the nodal involvement now puts me there...Not that the odds were all that stunning for stage IIIb (30-50% five year survival according to the 2002 AJCC staging chart), but the stats for stage IIIC about made my head rotate around 360 degrees ala Linda Blair in the Exorcist....27% odds of still being here five years from now; 18% of making it for 10.
Okay. Now I have seen it. I will choose to rail at the wind for a bit...then ignore it with every ounce of strength that I have.

Not that it wasn't before, but it is even more of a big deal now that I got this vaccine trial to participate in.
Scanxiety will have a whole new meaning...
Or, I am hoping against hope, my emotions will level out, I will reframe my thinking...AGAIN...and come to see this for what it is: Just another setback. As in all that has preceeded this, I will pick myself up and face this head on.

'Nuff whining from me for now :)

Just had a few rambling thoughts for today...

In awe of my capacity to gripe, whine and complain to whatever degree in my last post...but I guess we all got to get that out some kind of way-heheh.
Today, I am looking at all the brighter things that have come up in the last couple of weeks.
Found out that I will be able to participate in the M-Vax trial at Jefferson...Turns out that I had enough tumor cells from that last batch of sub-Q's/in-intransits (the big boy and its babies) to make a vaccine from. Now, to me, this is AWESOME, since it will hopefully help wipe out melanoma in the rest of my body, not just my leg as in the ILP. From my understanding, the cells will be irradiated and tagged with DNP (hapten?) so my body will hopefully recognize them as foreign. This will hopefully be a big step toward getting my immune system to recognize any UNmodified melanoma cells that may be lurking anywhere else in my body. I believe at some point there will also be an IV chemo infusion of Cytoxan in between vaccine injections, then sometime later, BCG. In any case, I am PSYCHED, because between the ILP and now this, hopefully we can blast melanoma from every angle and in any place it may be....

Got to thinking today about all the opportunities I had while I was in the hospital to talk about melanoma. Quite a few people asked about it while I was there: a couple of my younger nurses who were floored by my age and the fact that I have already had a few surgeries for it, one middle aged male nurse who had all sorts of questions since he had had a mole that he was sure was melanoma, but it was diagnosed benign, and one ultrasound tech.

The young girl who was the ultrasound tech asked me all sorts of questions about whether or not I baked on the beach and in tanning beds in my teens (yep) and twenties (unfortunately, another yep). She admitted to me that she used them herself in the past, but as she is seeing more and more young people with melanoma, she has been more and more discouraged to keep it up...Hah. Gotta get the word out whenever we can, even if only one person at a time.
Made sure I wore my "Melanoma Sucks" t-shirt while I was in the hospital too; once I got my IVs pulled, out it came and on it went. Got quite a few laughs, the most memorable being from my surgeon. He loved it and asked where I got it so he could get himself one :)

I am also so surprised by how well everything has gone with my recovery and how I have felt better and better each day (knock wood). From everything I had read along with everything I had found on the web, I got the incredibly strong impression that ILP was one mother of a procedure with very bad side effects. Of course, it is....just so surprised and ecstatic that so far, it seems, I am doing much better than I ever anticipated or imagined. The whole thing just got to be overblown in my mind...some giant, hulking, oppressive thing...The complete deeper abdominal node dissection has so far caused me more pain...and that is getting better every day...Now just to hope for all clear lymph nodes!!

Ed and I were even moderately crushed at the thought of not being able to go to his cousin's wedding this November. We were thinking that I would be too weak, sore, swollen, etc. to go to a wedding two weeks post-op. Now we are working things out to get our butts up to Philly to this wedding this coming weekend. Dancing my little (or not so little anymore) ass off like I used to may not be in the cards, but I definitely plan on getting up and dancing with my husband if it is the last thing I do!

In my case so far, all the thoughts and prayers sent up by so many of my dear friends and family must have worked...and for that, I thank you, from the bottom of my heart...All of you will never know how much all of it has meant to me, as there are just no words good enough...

Home at last... Warning: Loooong doesn't begin to describe.

Whew...Man, what an experience! Finally, I am home and things will return to something resembling normal (if there really IS such a thing around here...lol). It was so much more than incredible finally getting to wrap my arms around my kiddos and squeeze 'em tight, and hug my husband with a real hug (not from a hospital bed) and not let go for a looong time...

Anyway, figured I would post a bit here about my hectic but sometimes the opposite, frustrating yet sometimes amazing, anger yet other times, inspiration inducing last few days....But a BIG warning to those couple of people who may actually attempt to read any of this babble and few lame attempts at humor, this may get a BIT long winded!

Well...Had to get my ass up at the buttcrack of dawn, or maybe 3:30 am is too early even to be considered the "buttcrack"...(the birds weren't even singin' yet) in order to be at the hospital for a 5:00 am check in time to the pre-op waiting area...Ugh...Soooo NOT a morning person here. More like something scraped off the sidewalk or the bottom of your shoe if expected to function before 6:30 am, but anyway....Lets get it over with!

Got to the waiting area and of course, I was instructed to remove everything but what I was born with and to put on one of them lovely backless (and buttless) numbers that they only give you to wear in hospitals.

Didn't have to wait too long before someone came to wheel me on into the prep area for surgery where I would get to speak with the anesthesiologist, a couple of residents and finally, my surgeon before the surgery. Laid there on the stretcher for a bit while things were just starting up for the day...Snuck a peek at my chart and saw their blurb in my history about how I have had "multiple recurrences of melanoma in my left leg despite repeated surgeries" while I waited for another half an hour...

All things considered, everything moved pretty quickly and smoothly until several attempts to start my IV were made and failed, resulting in 3 blown veins...Finally an IV was started and I was wheeled on in. YIKES...Here we go to no place I had ever dreamed or wanted to visit: The operating room (for the 5th time in my semi-short life).
They gave me some injection into the IV line that was supposed to relax me...somehow I DON'T think so...I was wired. All the staff in the OR upon seeing my wide awake appearance, introduced themselves :).

Onto the table while too many sticky pads for the monitoring equipment were applied to too many areas to count. In comes the anesthesiologist and the surgeon, and I know this is IT. Countdown to BLACKOUT for a few hours.
The last thing I see is my own reflection in the overhanging high-powered light on an arm right above me. My last thought before the mask was applied to my face and the memory stops, no matter how horrible it sounds, was this: Man, this is F**ked up!
But of course, I know that sadly, there are many worse cases...too many. Just wasn't thinking too much about that then.

The procedure took over 8 hours....about passed right back out when I found THAT one out about two whole days later when I was more coherent. Of course, not being a constant state of semi-consciousness, there were periods of something not quite resembling lucidity...Heheh.
Definitely an experience, but ahhh, well, it usually is.

Here are a couple of rambling thoughts I had while I was in a drug induced haze and mostly chained to the hospital bed but finally able to stay conscious for more than five minutes at a time on the third day....


I am bummed...I don't know why or whether or not it seems strange...but I just am...Maybe just the simple fact of being in the hospital does it to me; because it has, in the past...every time...

I was riding semi high this morning most likely because it was the first time I woke up in days and felt something resembling human...And let me tell you, I was far less than stellar or light those first couple of days...
Possesed by demons is more fitting of those early moments. Those first couple of days...MAN....Did I ever feel like dog crap at an estimated 212 degrees. Coming up and out of that days long tunnel of post anesthesia misery seemed to take 100 times that...When I wasn't in a near catatonic yet supposedly awake morphine induced stupor, I was having morphine induced hallucinations and hearing things that weren't there...Oh, and one big MOTHER of all migraines which lasted for 3 DAYS. Three days of hurling my guts up while seeing stars explode across my inner eyelids. Cheery, I was not. It was far from pretty.
This morning (it was MOnday) thank the good Lord above, I felt much, much better...Plus, Ed, being the incredible man he is, was right by my side. But once he made his exit, hearing the hustle and bustle of other visitors bailing out for the night, and an almost utter quiet descending upon the hospital hallways, I felt extremely isolated...and ALONE....

Outside the sirens scream and wail, traffic rolls by and the world keeps spinning at its continous and unrelenting pace, and I sit here in a state of suspended animation...My leg, all seemingly 200lbs. of it, throbs its own continuous pulse...
Now, I re-enter the world of (hopefully) NED status, but with it, comes LIMBO-land. I know I will take limbo-land any day over melanoma-ville, but hey...it still ain't easy...

Down the hall, all is silent until I hear a dam break...a woman's faltering voice, followed by her succumbing to a sob and cry....
Maybe it is the place....


Whoever said melanoma cannot take away our dignity oughta be shot in the head...or at least broadsided upside the back of it with a 2X4 Tom & Jerry style. Okay, maybe I am being a little (or a LOT) too harsh there, since truly and in all reality, we only loose our dignity if we give it away.
Of course, I wasn't thinking that when the 10th nurse, nurse extern, or intern or whatever poked their little skull into my curtain posing as a privacy barrier to ask if I wanted a bed bath/sponge bath, etc, etc. I don't think how dirty I may or may not have been 3 hours post-op was too high on my priority list right about then...Nor do I think it would have had any influence whatsoever at that point on my comfort level. Hah.
But still they persisted just the same.
"Mizz Carlino, I am here to give you your sponge bath." Whaaaat?!?! Helloooo? I could barely roll the hell over at that point....I was still in the post anesthesia care unit.

As it turned out, I had to spend the night there until a bed opened up on the intermediate surgical ICU.

Melanoma can also teach you humility in no small way, along with making further random stabs at your dignity at any given time....

I rise up at a snail's pace the first time I am allowed to leave the bed on the third post-op day, all twisted and bound up, hunched up like a 90 year old replaced my 30 something year old body, hobble over to the lovely facility which in my currently diminished state, I am only allowed to use: THE BEDSIDE COMMODE.

Can you say Fabulous?

Oh, and someone must help you hobble over to this aforementioned COMMODE, thus further sapping more dignity away. Then, being the lucky soul that I am, proceeds to walk out the door without closing it....A few docs walk by, a clump of students, along with some nurses for good measure, and not a one of 'em can resist that all too powerful urge and pull to rubberneck their heads in the direction of the very frightful, semi-young, yet haggard-looking woman on the COMMODE. UGH.

Oh, and it must not be forgotten having to use the call bell in advance to get the assistance in the first place...When the person on the receiving end calls out "Yeah...can I help you?" over your speaker, you know you are in trouble. You know now, at this point in time, you will have to find a way to express over your speaker (instead of the only marginally more dignified method of face to face) that you need to use the throne, hopper, or just to rattle their cages (Why the heck not?), "I gotta go poop."

Then there are the countless others who come in asking if you have passed gas yet. Heheh. They're coming to take me away, hahahahah!
Okaaay. I must stop for now before the whinese police put me in lockdown. (I was on a Starbucks high and knew I needed to unwind when I wrote this, not that there is any excuse.)

On to bigger but not necessarily better things....Dilaudid...Not sure if I spelled it right, but DAMN!!...Don't think I need to worry about it anyway, as I won't be putting too many requests in any time soon for that particular pain medication.

The couple of times the nurse brought in the syringe during the daytime while I was wide awake, was sweet relief.
Knocked my pain down from a 7 or 8 to a 3 or 4 on a scale of 1-10. Awesome.
Didn't give me nausea. Even better.
The last dose even gave me a little buzz. COoool. Now we're talkin. (Bad, I know...harhar.) That should have been the first clue...
Went to go to sleep and HOLY HELL, what kind of ACID in wonderland trip am I on?!?!?
I was visited upon by the worst kind of nightmares I have ever experienced. I would jerk myself awake, soaked in sweat, terrified, look around, feel like I was really bugged out of my head for 10 more minutes, then tell myself "Holy SHIT...that was bad...roll over so you don't slip back into that dream from hell again!"

I even freaked out the night nurse...She set the alarm on my bed in case I got up during the night in a disoriented state and fell...

But inevitably, my eyelids, feeling as though each one was weighted down by its own 10lb weight, would slip closed once again. Back to psychedelia, acid trip from hell, like it or not. I definitely think, in this case...NOT!
Even morphine didn't bring on this vast array of total wig out potential type nightmares.
It's a toss up, I guess.
Live with a little more pain and a lot fewer psychotic nightmares by avoiding narcotic or opiate type pain medications, or....

Take the Dilaudid paved road to insanity-ville for a few hours. Awww, hell...Maybe I am assuming too much and it really wasn't the Dilaudid that night (Monday).
It could have been that gray, unappetizing piece of turkey bathed in its same-colored gelatinous gravy posing for dinner that night that did the trick.

Either way, I will avoid Dilaudid at all costs.....and maybe that turkey too...Just to be safe.


Ahh, well...now that this whole experience is behind me and my period of recovery and recollection is upon me, I realize that there were times I could have been on MUCH better behavior. I was at my utmost worst yet...(Profuse apolgies must be doled out to the staff who had to deal with me those first very hairy hours!)...

But as with everything else, it was a bump, albeit a big one, in the road that will now be a part of the landscape behind me. I came back to myself relatively easy with a renewed will to fight...and fight I will.
Plus, I got me some Percocets, and I'm not afraid to use 'em.

It will be my unrelenting MISSION in life to walk down the rest of that hopefully long road with Ed, raising and loving our kids together...and loving each other in the face of all that is pretty...or sometimes, as in this particular case, not.

Yikes.

Trying hard to think of something serene...something that will soothe and pacify that one nerve that I have left...
Actually, I do believe I smell something burning and see smoke filling this room as I type this...

Tomorrow I am going in...Tomorrow is the day of my ILP procedure, and if I do say so, I am petrified.
My stomach is knotting up BIG TIME, to say the least...
Of course, I do count myself lucky, as things can always be worse on a number of levels. I will try to think of all the ways that I am lucky and blessed. I know for sure, that this will bring me a ton of comfort.
So far, knock on wood, my scans are clear...as far as I know, I am still stage III.
I have all my family and good friends pulling for me and praying...
I have great docs willing to get aggressive and fight hard to wipe this beast out...and this procedure, I know for a fact, costs an obscene amount of money...just thinking about that makes my head ache. My insurance is going to cover it, as it is deemed 'medically necessary'...Whoa. That alone is just mind boggling to me. Putting a cost or a value on human life like that...But we all know that we don't need docs and definitely not insurance companies to tell us we are "worth saving." Hah!!
This procedure has great odds of wiping out this hateful disease, at least in my leg, anyway!
I can go into this being fairly certain that it will kick some melanoma ass. I will make myself be strong, and when I come home, even if I feel like dog crap yet in a haze of narcotics, I will remind myself of all I am fighting and fighting for.

Heheh. Just disturbing enough.

Now that's pretty gross...If the picture here isn't endorsement enough for why we shouldn't be all consumed in the quest for the perfect tan, I don't know what should be. Well, maybe Magda in the movie There's Something About Mary...she's gotta come in at a close second.
A picture is worth a thousand words and all that, and this one is just about the worst I have seen. Seen plenty of people after years of avid sunbathing only to wind up looking like an old saddle bag when they grow old.
In a perfect world, just telling people about the risk of melanoma and how deadly it can be should be enough of a reason to keep people from their constant treks to tanning beds and their refusal to slop on a ton of sunscreen before hitting the beach....but alas, it does not seem to be for many people.
Sadly, vanity is what appeals to so many...
I was one of many melanoma patients who was a part of all that hype...The need to be bronze and not go back to school practically glowing in the dark with my chicken white skin. It is primarily this that got me into this fix that I find myself in right now...
Well, to be technical, not completely. It got me melanoma. It didn't put me at stage IIIb. That, I do believe was due to my being misdiagnosed back in 2001, but I digress.
Anyway, came across this picture and thought it perfectly conveyed the argument against that all too important and irrepressable need so many people have to be tan.

Whoa...I really need to get cooking that grub that I should be preparing for my period of down time.

Decompression

Lord.
With all the seemingly insane moments these last couple of months, I have fluctuated wildly between near hysteria to a state of total blank out. Guess my brain is trying to shut down after being too overstimulated lately.
I can feel myself slipping into a complete and utter stupor at times; sometimes roaming through the house like a zombie, completely zoned out.
Once I kiss the kiddos and put 'em on the bus, the zombie induced state of mind creeps in....Assuming I need this cycle of unwinding or my mind would suffer some level of irreparable damage.
Just so damned lazy lately...
So much stimulation that when I have had a chance to unwind, I am like a balloon someone lets go of without tying the knot to hold the air in; flying around the room until all the air is let out, then lying there all limp and shriveled up.
Okay...a bit of a minor exaggeration there, but close. Yep. That fairly to moderately resembles me during quiet periods lately.
You would think I would be utilizing my time once the kids are in school wisely...but noooo.
Into the zone I go.
Just sapped; literally wiped OUT.
Actually wrote "clean me now" in the dust on my bedroom dresser while a dust bunny the size of a tumble weed rolled by and came to a rest by my feet. I finally snapped out of my daze long enough to realize that I really need to get my head outta my @$$!

Okay, I am prone to exaggerate quite often.
Although my routine has slackened off to an all time low, my housecleaning attempts have been feeble at best, and I really need to get on the ball and start stockpiling some form of prepared grub for my family to cook with ease while I am out of commission (which I am hoping will be only for a very BRIEF time). I am pretty certain that there won't be any casserole brigade in my neck of the woods, so I got two days.

Just completely lacking the motivation right at the moment. Running on fumes. I can feel my eyes glazing over and the self induced lethargy creeping into my bones; held on to way too much tension for too long there...Sustaining a sizeable level of fear can make you pretty bombed out at times.

As with most rought spots we hit, I know that this too will pass, I just hope it is sooner rather than later; before the dust bunnies overtake our home, rise up in revolt, and the natives grow restless wondering what manner of whack job has replaced their wife and mother.