Through it all...Life is Beautiful.

Despite whatever bad news comes down the pike...And damn, sometimes it can be mind bogglingly bad...
I never lose sight of the fact that in this life, I have been so blessed. I have been given such amazing gifts in this life that are far more than you would dare to expect out of something as seemingly standard and at times ordinary as life.

Not that you ever truly don't appreciate all you have been blessed with in this life, but cancer opens your eyes...I mean really opens your eyes....to everything around you; things that sadly, so many people who haven't been touched by it take for granted.

I wish like hell I never had to imagine the scenario of leaving this amazing life behind, because, simply put, it makes me feel as though someone punched a whole in my chest and ripped out my heart....laid me bare....

Sometimes, however, on those long dark nights, when the house is quiet, in the middle of a random bout of insomnia, my mind can't help but wander to that terrifying possibility in spite of all my best efforts to prevent it....

One thing remains clear no matter how terrifying....The fact is never lost on me that despite whatever bad I have been dealt, it has always been tempered with the amazing; the unforgettable, the beautiful. Nothing like the bad or devastating to truly make you fully appreciate the incredible; moments, people, things, that bring you sheer, pure joy....

An amazing husband for whom I feel a love I cannot measure, and two beautiful kids for whom my love is also limitless....

So many friends who have shown me kindness that has virtually brought me to tears...but only the best kind of tears. They are all my angels, no exaggeration...

Much as I can't stand to say this, but if I were to take my exit sooner rather than later, I feel that no matter how brief, my life and my heart have been completely filled up.

But here's the thing....I am greedy as hell for more....

More days, more months...more YEARS. I don't want it to end....EVER. But as we all know, in this life we are each owed a death...I just hope mine is a long, loooong, LONG time away....

Yesterday, it was confirmed that in addition to having lung metastases, I also have melanoma metastases in two spots in my bones. It goes without saying that right about now, I am petrified...Maybe even petrified is too mild a word...

Yet I feel that by admitting I am petrified it makes me weak. My rational side tells me that to believe myself weak for feeling something so human in the face of something where I have every right to have moments of weakness, moments of sheer panic....moments of utter sadness and heartbreak....would be being far to hard on myself.

But hell, most of the time, I can manage a fair share of optimism, either on my own, or now, with the help of some "happy" meds...hehe. Yep, I caved in and took the Rx for some Xanax.

It goes without saying that I am holding on to this life in a white knuckled deathgrip. This hike up to stage IV has laid me bare; forcing me to experience the rawest of emotions...

And yet, while being bumped up to stage IV melanoma, which if you believe everything you read, is incurable and in most cases fatal, there is one thing that is impossible to stomp out....HOPE.

It is NOT a death sentence. I refuse to believe it. I have to believe I will win this battle.

Melanoma, no matter what kind of shit it slings my way, will not break my will...It will never, ever diminish my will to LIVE, to laugh, to love...
This melanoma, bitch of a beast that it is, can rob us of so much, rob those we love of so much...but it cannot take or break my spirit. It cannot steal my hope, which even in its most diminished amounts, always remains...A fine thread weaving its way through everything we experience, even the worst....

As for an update:

Today I had a consult with the radiation oncologist here locally at Christiana Hospital in the fairly new Helen F. Graham Cancer Center. This is a HUGE load off our backs for me to be able to go to these treatments close to home. The doc was very nice, and from what I have seen in just that one visit, is also very compassionate. I go back in tomorrow to have a simulated CT scan in order to mark the spots that have to be irradiated: my sacrum (very low spine/back pelvis) and my right femur/hip. A "tattoo" will be applied to mark these spots...

Now this, I found at least mildy hysterical, considering that I already have two butterfly tattoos very close to the regions they will have to mark.

Then, I gotta get ready for the flesh BBQ (bad joke, I know, but I got an at times semi-sick sense of humor). The first treatment should be early next week--either Monday or Tuesday. I will have anywhere from 10-14 treatments to these areas.This should hopefully help considerably with the pain I have started to feel at a constant level now....And this pain...Holy Mary Mother of God!!! Even percocet couldn't touch it...Crying in my sleep last night, since it seems to be worse at night, it at the very least served to only get me even more steamed--rightously pissed at stinkin' ol' melanoma...

I will turn that anger around and use it in my fight.

Once all the radiation treatments are done it will be showtime once again only with the IL-2. I know this is one helluva rough treatment from all I have begun to learn....But I will just keep chanting this mantra in my head: Go obliterate this nasty melanoma!! Melanoma, you are NOT welcome here!

You (melanoma) are in deep shit now...'Cause I am SO ready to kick some ass!

Bend but never break.

It always amazes me, and never stops inspiring me, the human spirit's ability to adapt and adjust to even the most seemingly insurmountable odds.

As I sit here, I hope like hell I can pick myself up off the floor, breathe in, breathe out, summon up strength that I never new I had, and face head on, into the storm.

But this will to fight--that is always an undercurrent. I don't think it ever stops in anyone that has ever had to face a cancer diagnosis whether it is for themselves or someone they love.
Giving up is not an option.

Sometimes, in this life, things can blindside you...blast you out of the water, knock you to the ground...threaten to undo you.
I have felt the ground shift beneath my feet...
All of that on some crystal clear blue day that before it hit you, you thought was just like any other that came before it...

Strange too, how you can remember with utter clarity, almost as if the moment has been crystallized in time, the exact day of the week, date and time of day that you get bad news...something that seems so devastating to you at that time, that you fear you won't ever recover and get back on your feet.

I got that call from the doctor that told me I now had melanoma on a Friday. August 15th, 2003.
My life would never be the same. But who's life is after something like that?
I can still remember all the songs on the radio...the weather...what I was wearing.

There have been several other days like that too...
March 23, 2005. The day I found out I had advanced to and was now stage III melanoma with my first in-transit recurrence. Today, marks two years to the day...
Only now, I am stage IV.
March 8, 2007 and March 19, 2007. They are racking up, but I hope like hell that no matter what lies ahead, good or bad, there are a LOT more dates...years from now...

Stage IV is a stage III melanoma patient's worst nightmare, to be totally blunt. Any melanoma patient's worst nightmare, to be completely honest. It is this surreal and unimaginable place we dare not imagine....
As a stage III (or any other stage) patient, you look on in awe and admiration at the courage shown despite what you can only imagine terrifying circumstances, displayed by all those patients facing stage IV melanoma. You cannot imagine yourself being half as strong.

I know that now that I am sitting there...I don't feel like I am. Right now, I feel like a quivering puddle on the floor. But slowly, that shock is fading, and taking its place is the undeniable realization that I have to pick up the pieces, change my perspective once again, and face this head on.

There is only one undeniable fact, through whatever tears I have cried, and all those that will be shed, through whatever anger I have felt: I will do whatever I can....anything within my power to stop this beast of a cancer.

Whatever it takes.

IL2 sounds like one helluva rough treatment, but despite all of that, the outcome when it is positive, can't be denied. If I do have bone metastasis and I have to have radiation before the IL-2, I have two words:
BRING IT!

Never Give Up.

I am dedicating this one to you, Ed. You are my soul mate. My dream come true. Everything I ever wanted. I can't ever say it enough...I know I should say it more.

Thank you so much for all that you do, for being the person and the man that you are, for being here for me always, for always loving me unshakeably despite how nutz we both know that I can be at times...

But most of all, for giving me you...which to me, is the world. I couldn't even dream of giving all that up without one HELL of a fight.

You have saved me in all the ways a person can be saved.

I will fight like hell...and I will never give in.

A temporary lapse of sanity....

Well...Got the MRI out of the way. As much as I love spending time in the tube, that was the easiest part. Waiting to hear the results is always infinitely harder than the test itself. Hmmmm...well maybe the oral contrast cocktail for the CT scans is almost as hard to stomach as waiting for a result, but not quite.
I laugh every time an appointment has to be made for an MRI and the receptionist/scheduler asks if you are claustrophobic and will be needing anything to help you get through the test. I am always tempted to tell them that I am not sure...that if they see me thrashing around as if something lit my ass on fire and screaming to be beamed up to the mother ship that they should send someone in with a tranquilizer.
AS IF any living soul could possibly enjoy feeling like they are closed up in a narrow pipe for a couple of hours while some terrible muzak (*in some cases) gets piped into your ears in the hopes of distracting you from the vast array of bizarro noises that emanate from the MRI machine. As for being claustrophobic, technically speaking, I am not. But it isn't too far a stretch to visualize and imagine yourself having a psychotic episode while being trapped in that tube.
But seriously...while not my first choice for how to spend a beautiful spring afternoon, going completely batshit while in that narrow tunnel-like structure isn't something that has actually happened to me. It is the length of the test that is the killer. I get bored out of my gourd. Today, I got to listen to a top 40 station, which was a pleasant surprise. That has only happened one other time. Both times, no lie, one of the same songs came on the radio while I was in the tube. "I Ain't no Hollerback Girl" by Gwen Stefani. One time I came close to belting it out loud: I AIN'T NOOO HolllerrBACK Girrrrrl... One time I did. They probably considered sedating my ass then.
Anyway...for now that is all through. Now the wait begins. Again.

Waiting is such an integral part of having melanoma. So much so, that while insanity inducing, it wouldn't be complete without it.

In general, lately, I have felt like a woman gone mad. Psycho mad, that is. The bursting into tears goes without saying, but it is interrupted by complete zone outs, black outs and even at times, bursting out laughing inappropriately at sometimes inane and ridiculous things.

My husband and I have had a hell of a few days, but I guess that is a no brainer. Aside from the obvious that has taxed, stressed and upset us, we have had to drop this bombshell on countless family members and friends...

My sister's was by far the funniest response. Strange when I think of it now, that she didn't seem the least bit upset...instead, she made a joke: "Now you have a good excuse to find your nearest hash dealer...to help you get through what sounds like one hell of a treatment coming up..."

Hey maaaaan. Don't think that possibility hasn't crossed my mind sis. Especially in the last couple of days.

Another whacked thing that happened recently, that Ed and I are still laughing about was a learning impaired receptionist at the imaging place that we encountered when I had my PET/CT scan done. She was not there upon my arrival when I signed in, but she made her presence and her objections known loud and clear when I was getting ready to leave.

We didn't have anyone lined up to watch the kids that afternoon, so we had them with us. I was gathering my things up, and this receptionist says to me, "Did they tell you about this test...Ya know, what you should be concerned about....?"

I said "Yeah, drink lots of water to flush the tracer stuff out quicker?" complete with dumbfounded stare at the fact that she chose when I was leaving to quiz me.

"Noooo, NO..." She puckered her lips in a tight disapproving frown. "You shouldn't be round those children.That stuff you just got is radioactive"

Ed and I just looked at each other in a complete state of stupor and disbelief.

I told her that I had had two PETS before and no one ever told me before that I couldn't be around children. She said "WEeeelll...You shouldn't be within a hundred feet of them kids."

WTF? Well color me retarded.

I was completely unaware that a PET scan would make me radioactive; that I would be gassing off some type of noxious fumes that could endanger my children. I do believe that this information would have been critical info that should have been divulged to me by my doctor and nurse, and at the very least, by the tech who scheduled the test...IF indeed it were rooted in fact.

She just sat on her little perch clicking her fingernails on the countertop with that puckered up scowl that gave her the look of just having sucked on a lemon that screamed "what do you plan to do about it?!?"

HELL-OOoo.

There was an ever so pleasant ice storm/mini-blizzard starting to pick up outside and I was an hour from home. What the hell were we supposed to do, have me camp out on a rock hard chair in their waiting room?

So she says: "I guess I gotta let you go home all in one car, cause what else you gonna do now?"

I don't know....maybe go home, lock myself in a dark room and see if I glow bright neon yellow green?

PU-LLEEEZE.

First of all, I know she was full of shit--even my doc and his nurse laughed when we told them at the visit on MOnday, and second of all my bullshit meter is all maxed out right about now. So we hit the road and put this event into our arsenal of Shit to Crack Up Over Later.

Whew. I apologize for that long winded rant there...Just couldn't resist the urge to get that one out.

Now...I wait. And try to hold on to that last shred of something that used to resemble my sanity.

Sucker Punched.

Within my mind is running a constant ticker tape with one sole word repeated over, and over...and over:
FUCK.
But first things first.
I did not get quite the news that I had been hoping for yesterday at the doctor's appointment. I feel horrible for not updating as soon as I knew, for all my dear friends that were so very worried...
It was all I could do to hold things together the rest of the day. Came totally unglued a couple of times to be totally honest, but it was so very hard. I had to try and keep up the illusion that things are all okay at the very least for my kiddos, but for my dear Ed too...I have to be strong. I have no other alternative now.

The PET scan showed 4 lung mets. Three in the right lung, one in the left. All of them hot and "highly concerning for metastatic disease."
Needless to say that this was a HUGE BLOW.
But there was more...
"A large metastatic lesion within the left sacrum" along with another "metastatic lesion within the proximal trochanteric region of the right femur." Gawd...my lower spine/pelvis and my right upper thigh bone...
I just don't know what to say. I don't know what to think. I don't know what to feel other than terrified of whatever lies ahead. But the thing is, I have to make myself get over this fear quick...I have to toughen up. Brainwash myself that I am going to kick some ass. I have to...I don't see it any other way.
SHIT.
But first, I have another test; an MRI this Thursday to verify these spots in my bones. I keep telling myself the same things over and over. PETS are notorious for false positives. This nagging pain the very lowest part of my spine that I have felt for the last month could very realistically be due to a muscle injury or anything else for that matter...Inflammation? I know that lights up a PET at times too...
Just got to hold my breath a little longer where these new spots are concerned. At least until I find out what this MRI says.

Overall, the oncologists main recommendation is for IL-2. He believes that with my being young, generally healthy and strong, I am physically able to withstand the treatment. He did warn me that it will be very tough, saying in his accented English that I will "be sick like dog" for a few weeks. He said while systemic chemo and the IL-2 have about the same complete response percentages, the IL-2 apparently has the longest durable response.
I have to decide soon. Even though my lung tumors are small, still, there is no time to waste.

But first, this MRI.

If this MRI confirms bone metastases, then I will have to have radiation treatments to those areas before I start the IL-2.

Wow. I am so at a loss...I am reeling, my head is spinning, my guts just dropped to the floor, my heart is in my throat....there is that constant lump that stays lodged there, no matter how hard I try to dislodge it...That lump that always means that a sob wracking crying jag is imminent.....
But somehow, despite all of this, I have to find the strength within me to fight this thing, no matter how daunting it seems right now.

And fight like hell, I will. Fight like I never have faught before.

Hurry up and wait. But don't worry....yeah right.

Okay. Let the fun begin.
Gotta run up to Philly tomorrow afternoon for a PET scan. But I guess I am getting ahead of myself...at least as far as my last update goes.

Heard from the oncologist on Tuesday afternoon. That was after I had a not quite full scale meltdown with the nurse. I gave her a call to ask if the doc had gotten a chance to review my CT films on the disk, to which she replied that she was pretty sure he had. I said I hated to be a pest, but I couldn't help myself. She assured me that I wasn't. She said she wasn't sure if he was planning on waiting until my visit on MOnday to go over everything or if he was planning on giving me a call. I felt that fragile framework that was enabling me to keep myself from sssnnnnaaaapping starting to crumble. I told her that since they didn't say "all clear" to me last Friday, among other things, that my mind has been allowed to wander too much...Wandering minds, at least in my case, can't help but go at the very least, to the edges of the worst case scenario. Hel-LOoo?!?!

I said "there is no way I can stay sane if I have to wait until Monday. I know there are some more involved details he wants to wait to go over with me, and that, I can completely understand....But is there any way you can give me even a small clue about what his opinion is? Even just a simple or abridged version?"
She laughed at me, but in a nice and sympathizing way.

I am laughing, because she already thinks Ed and I are whacked. She laughs at us. Ed likes to tease her a bit, or even tease me a bit during different parts of the appointments, which both of us laugh at, and she even finds funny. Another time, both Ed and I were laughing and joking about how the grid type alignment of the bumps from my vaccine injections resemble that game seen on numerous kids' menus at many restaurants. You know the game where you each take turns drawing a line and the one that closes the box gets to put their initial there. Staking the claim and getting a point. I said that was cool...If they were ever bored and we didn't have paper, they could just use my upper arm. The nurse was just shaking her head at us with that half smile on her face, "you guys are nuts"....Oh, and another time we (or more specifically, me) were blowing up those gloves and making different animals out of them. They were for the kids....really....

Anyway. There is whacked in a mild semi goofy way....then there is WHACKED like I get when I start worrying....
Sooo, finally and at long last, she told me in the most understanding way that she would either have the doc call me back or call me back herself.
It was the doc that I heard from.
Basically, he agreed with the CT scan. He said there were 2 spots/lesions/nodules that were 1 centimeter or slightly larger that in his opinion, after reviewing my November scans, were definitely NEW. He said there were some other smaller ones in that 5 millimeter range that were new also. When they are small, there is also the slight possibility that they could be caused by an infection, etc. He seemed most concerned with the ones 1cm or just over. He said that given my history and that all of these are new, we had to proceed as if they are melanoma.
He gave me an overview of all the options we will discuss on MOnday:
1. Interleukin 2. This one is only given up in Bethlehem, Pa.
2. Bio-Chemo there at Jeff.
3. A clinical trial, either at NCI in Bethesda, Md. or at UPENN.

He said we would discuss these things in more detail then, because we (myself and Ed) have a lot to consider, being a young family with small children.
But first, I gotta get a PET scan to confirm these spots. If that lights up the same spots as HOT then I will have confirmed stage IV melanoma with lung mets.
Let me just interject here by saying I HOPE THE HELL IT DOESN'T.
But I guess, obviously, that goes without saying..heheh.

It is possible at that size though, that they may not light up yet. For that (if nothing lights up), he said I would be watched very closely and re-scanned at a short interval like a month or so.
Oh no. Watch and Wait. LImbo HELL.

Buut...there is a good flip side to that...if any of this is good. That is, my denial mode could hang on for a little longer. I won't truly have to deal with it yet. Bad, I know. But I will take my sanity wherever I can get it now.
But, to be honest, far as I see it, good would be if these suckers disappear by that next scan. That is, of course, if nothing lights up on that PET tomorrow.
We will know by Monday if something lit up or not....He will definitely have results by then...

As far as this PET goes....
PETS are always such a gas. This oughta be funny. My appointment is at 3:00 tomorrow afternoon. I can have nothing to eat after 8:00 am or so. At first, my nurse told me nothing but water that whole day. She had to get a joke in at my expense after that. She said I would love this next part: NO SOda for 12 hours (*even she knows what an addict I am*). Maybe a very light breakfast at the butt crack of dawn...I LOOOOVED hearing that. NOT.

But when the tech from the imaging place called to go over my instructions with me, she told me I could have that light breakfast as long as it was before 8:00. She also said I could have coffee, tea, juice or even soda before then too! AWESOME. My soda-holic ass was mighty pleased to hear that.
I asked if Carbs were still restricted the whole day before that too (* I remembered this from previous PETs) and she said no. Through trial and error they had come to the conclusion that this didn't really make that big a difference in the results. Let me just tell you that I was jumping up and down as if that prize patrol guy had just dropped by to tell me that I won the Publisher's Clearing House Sweepstakes.
That carb restricted thing....I wasn't too fond of that. Okay. That is too mild. I absolutely HATED it. Even worse was the going without soda or coffee first thing in the morning scenario.
I am not very pleasant in the morning if I do say so myself. Not nasty...just basically zombified out for a while. If I don't get that jolt of caffeine, it is not a pretty sight. So, that was excellent news.
I will take it where I can get it right now ;)
As far as te results from the PET go, I will try to go against all those negative, neurotic and nagging voices that keep telling me what I hope like hell it isn't...and think positive.
More later....on as the mole turns. Lame, I know...but I haven't been quite right in the head for a few days or so, so there should be a leniency clause.

This and that

Hangin' in there trying to stay sane. If that is ever really possible in my case--heheh. Still haven't heard back from the doc, but they supposedly just received the disk with the images on it today....soooo...
I know they have a melanoma meeting at Jeff every Tuesday morning too, so he may be waiting to get some other viewpoints from some of the other docs there, too.
Aside from that, I am just trying like hell to keep my mind off the more morbid thoughts. Far as I'm concerned, I don't even want to THINK about being "promoted" or for a more accurate word usage, demoted, to stage IV, but then again...Who the hell does?
Thinking ALOT lately about how little people really know about melanoma.
So many people think that is is "just" skin cancer, when that doesn't even begin to scratch the surface. That is just a technicality. The luck, or lack thereof, of anatomical location. It ends up being lumped together with other skin cancers, when in fact, it can metastasize internally and ultimately kill a person. Most people that haven't been affected by it either themselves or by someone they care about, have no clue....

I keep hearing these commercials on the radio for Hollywood Tans that just infuriate me to no end...

Apparently, their latest gimmick to get people to come back in droves, over and over again, is to have this sweepstakes where the more you come in, the more chances you get to enter to win this sweet little Porsche convertible.
Lovely.
And here I sit, thinkin' that they oughta slap a Surgeon General's warning on every one of those coffin like contraptions. Much like a pack of cigs. Ironic the direct comparison that can be made between a tanning bed and a coffin.
Okay, to be fair, most people will not go on to develop melanoma, but still....
And to be even more fair, besides my fair complexion riddled with freckles and moles almost more numerous than the stars in the milky way being a huge risk factor, I did spend many days as a teen out baking in the sun either on my deck or on the beach with no sunblock, but I digress.

This time spent crispering up in the sun went on despite my mother's lecturing complete with wagging index finger pointed in my direction. She read an article in a magazine when I was 15 back in 1987 or so, about this "really scary skin cancer that starts in a mole" and shoved it in my face instructing me to read it. I just blew it off, after noticing that most of the people it discussed were over 50. Hmmm.

Never in a million years, did I even begin to imagine.

Come to think of it, when I was little, she would yank me back while my sister ran off with the other kids at barbecues at the lake, saying "Not you...You need sunblock on that fair skin of yours..."

I still remember the brand. Sundown. I think, if I remember correctly, that is was spf 15, which was HUGE back then in the late 70's.

One time, when I was six or so, I remember sitting in front of the TV watching Sesame Street, peeling my sunburnt skin off in sheets. Gross, I know....

Makes me cringe just thinking about it all now.

Anyway, I guess I have just been thinking more and more about finding a way to get the word out more about this cancer. Trying to come up with ways to raise awareness.

Also, seriously considering gathering up a couple of my friends to join up with me and do the Relay for Life this year. Pretty sure it is in June at one of the High Schools nearby. That would be great.

Just have this huge urge to do something proactive.

As for that nasty ol' CT scan....Hopefully, very soon, I will have only good news to post.

Still Waiting....

Whoa. This latest development takes limbo to a whole 'nother level.
But I am getting ahead of myself.
I must admit now, for the record, that I pulled a complete and total bonehead and read my own CT scan report. Now I am wishing like HELL that I didn't even look at the thing...
But I must confess...I can't help myself. I am neurotic and nosy to a fault. I had to run up to the imaging place to pick up the CD copy of the films, and of course, along with it, was a copy of the report. That envelope was calling out to me. Screaming out to me to be opened up so I could survey what the paper inside said. Hell. I couldn't help myself. It was like a magnet. I am a glutton for punishment, that's for sure. The worst part was that I still had to do the grocery shopping. The imaging place was my first stop. I can only begin to imagine what a scary sight I must have been, walking through the store picking out canned goods and assorted breakfast items looking like I was in a state of shock induced catatonia.
The news was not quite what I had hoped for...
I read through all that babble giving the technical info on how the scan was conducted and all that preliminary standard crap that is always on my CT and then I got to the phrase that stated:

"When compared to the prior study, there has however been a significant change. The study now shows multiple new pulmonary nodules compatible with metastatic disease."

What the fuck?!?!
Sorry for my use of the dreaded F-bomb there, but that is just a mild sampling of what kind of obscenities kept flying out of my mouth over the course of the day yesterday. And today too, to be completely honest....But yesterday anyone who didn't know me would have assumed I was a victim of Tourrette's instead of melanoma (no offense intended there to anyone with Tourrette's).

I have been walking around in a blur for the last 30 hours or so, and when I haven't...I have gone almost catatonic. With the exception of those couple of crying jags; and I mean the nasty kind complete with eyes so puffy they are almost swelled shut, snot running rampant and my head so plugged up from crying that I thought it would explode.

To read this report, it would appear that I have lung mets. Definitely NOT the news I was hoping to hear. FIVE (yes, 5) new nodules -not counting those benign non changing ones that have been on my CT scans for almost a year now, are on my right lung, and another nodule on my left lung.

I am hoping like hell I am jumping off the cliff to soon here. I spoke with my doc's nurse this morning, and she told me that the doc wants me to FED-EX the CD up to him ASAP. He wants to see the images himself, because to use her words, he just doesn't believe it.
I thought to myself, but couldn't tell her because I assumed they would get P-O'ed if they knew I couldn't resist the temptation to read the report, "I couldn't f**king believe it myself!"

Anyway, he will apparently get his paws on this CD on Monday, will review the images himself, and the nurse told me, that my appointment that was originally scheduled for the 28th would have to be moved up.

Buuuut.

He wants to go thoroughly over the images before he sees me, so I gotta wait to hear what he thinks for sure until Monday the 19th. Then she said we may have some big decisions to make.

Holy HELL. I am not the most patient person in the world. Far from it. Not good at waiting at all. Hope my sanity stays intact.
I'm not exaggerating there either. I burst into tears just imagining for a split second how I was going to tell my kids that this shit is back again, and now it could be stage IV. Well, they don't really understand about the staging system, but they would understand what it means if it has come back. And while I would love to keep them from that kind of upset, it is awfully difficult to hide the evidence when the doctors appointments were getting ramped up once again.
Then of course, there are all the other morbid thoughts that can creep in and get a stranglehold over your emotions when a bombshell is just dropped on you out of nowhere...Before you really get a chance to check yourself.
All those what ifs...

Then I made myself stop the emotional tirade. Told myself that I have to remain strong and calm for Ed. For the kids. For myself too, of course....Because if he wants to see the images himself, maybe....just maybe, it is because he thinks there is the remotest possibility that these nodules could be something else?

Too good to be true?
I don't know....But I am hoping like hell....
More later....

Waiting to exhale....

Figured it was probably time for an update since a couple of things have happened in the last few days.
Went in today for my CT scan and saw the token two other people trying to choke down that delectable contrast cocktail. Yum. Where's mine? Hell, that nasty stuff was on its way out to me soon enough. Slammed it like I always do....Best NOT to savor and linger too much over that less than palatable concoction. Down the hatch it went. Sit for an hour and get some reading done, now the angst ridden wait begins.

That is, if it ever truly stops in the first place. With scantime it just gets amplified to the nth power is all.

I will tell myself now, for my sanity: There is no good reason for me to believe that scan will show anything. It WILL be clear. It has now been just two weeks shy of two years that I have been dealing with in-transit melanoma recurrences. Two years since I have been a stage III melanoma patient. Not recurrence free, but two years that I haven't progressed to stage IV yet. Two years of clean CT scans....well, that isn't alltogether true. My sub-Q this past summer was found on CT, so....

NO organ mets. Not yet, and I hope like hell, not ever. We will see in that seemingly interminable amount of time it takes this local imaging place to send the results to my docs.

As far as my vaccine trial has been going....

I had a bit of a letdown on Friday. Not by any means a blow, or even anything that could be considered a setback; just a return to square one.

Wednesday I had to go back up to Philly to have the DTH placement. This whole DTH deal is where they inject you in a couple places on the same arm as the vaccine was given, but on the inner forearm. One injection is just some basic type of solution, and in my case, I only received one other injection above it: My own modified melanoma cells. The ones that have been tagged with that hapten/DNP stuff to make them look more foreign. They were hoping for a reaction. A sign that over the course of this vaccine trial, my body had mounted an immune response to those stinkin' ol' melanoma cells.

Friday I had to go back in because the result had to be read after 48 hours of the injections.

I had no reaction. Nada. Zilch. Zippo.

Damn.

Turns out all those nasty, festering boil-like sores on my arm where each injection had been given were simply from the BCG that was given at the same time. That was the expected reaction; and every patient...even those in the "control group" was at least going to get that.

Ahh, well... That's the way the cookie crumbles. That's life. Hell....I had a recurrence within two months of stopping Temodar; not even two weeks after stopping the GM-CSF. There really is no magic bullet with this shit. You just play your odds and hope for the best, cause it is all a shot in the dark, at best.

My mind ran around in circles for about an hour or two. In short, I coulda spazzed out....but I didn't go that far. I figured oh, well...I am going to pick myself up from this semi-letdown and tell myself this: Melanoma is NOT going to get me. Heheh. I can tell myself that, anyway no matter how hollow it sounds at any given time...It will be my mantra. I have to, to stay sane. In reality, we all know that ultimately, that is not truly something we have any control over. I have to let go of this need to be in control. Of this illusion that in the grand scheme of things, we have any shred of control. In the end, we just do what we can. Whatever we can do. Whatever lies within our power, however limited. We keep on fighting and take every opportunity out there to kick melanoma ass.

Now I just have to stay sane until those CT results come in. Ha ha. Easier said than done, I know....but I will try like hell not to borrow trouble and instead of thinking the worst...Hope for the best. All CLEAR. Then....it will be party time.

More Heartbreak on MPIP :(

I was so upset and floored to visit MPIP (Melanoma Patient's Information Page) these last couple days....
The first very, very sad news was to hear that Joyce, who posted there as "Kawrider" had passed.
Today, I popped on the computer for the first time in a couple of days and was heartbroken all the more to read that Heather is gone. Two completely amazing, strong and inspirational women and just all around beautiful people are no longer here on this Earth to light it up....
So very, very sad....
While I didn't know either one of them personally, or even through email on phone conversations, they both have made a huge impact on me, as I am sure countless other melanoma warriors.
I HATE this friggin' disease. It has robbed this earth of too many; stolen lives, and people dear to their loved ones.
Tragic. There is no better word.
Yet in the wake of these losses, it cannot be denied the countless numbers of people near and far that are and have been touched and forever changed by these incredible people that fought this disease. To say they "Lost" the battle would not begin to give them justice. They are now free.

Joyce and Heather, you will never be forgotten.