Remembering

With alot of help from our best friends Pete and Denise, We are keeping Shannon in our hearts. This weekend we put together a memorial garden in our backyard. It turned out great, Shannon would be proud.
Last fall, on our anual Halloween camping trip we planted Shannons favorite tree. We put it next to the play ground. We have lots of great memories there.
It has been a very busy year. The kids a doing well in school. I think the are doing ok with their loss. There has been alot of adjusting, but we are getting it done. I can't thank my friends and family enough.

Thanks, Ed

The quiet girl at the back of the room, Heard around the world

Shannon was an amazing person. She was the strongest person I have ever known. She never gave up, She fought this cancer to the very end. She worried more about everyone than herself. She wanted so badly to be here for the kids. I have been thinking for weeks, to come up with a nice tribute, to finish her blog. This is how I think it should be. I'm going to need some help. Shannon touched alot of people near and far, I would like everyone to send a comment about what Shannon ment to you. I'm going to start it , but I would like to hear from as many people as we can.Even if you only want to say hi and where your from.Thank you. Shannon will be missed, but never forgotten.

Rewind to the summer of '98. There she was across the yard. I didn't know it at the time, but she was to be the love of my life. Shannon and her sister moved to the house behind my best friends Pete and Denise. She started Alannah in Denise's daycare. I asked Denise to fix us up. On our very first date, I knew she was the one. I could picture myself growing old with her. It felt like I knew her for years. I know it might sound like BS to some, but it truly was love at first sight. Christmas day 1998 I proposed to her, She was the best present I ever gave to myself. I loved her with everything I had. I know she loved me. I don't regret a single moment that I spent with her. She gave me two beautifull children. I gave her the loving family she needed. She gave me love and comfort. I gave her support and strength, with a little humor thrown in. We made a great team. I will still always love her.

This is a poem written by Alannah for Shannon

In a sad and upsetting time
we were there for you.

Yet you left before our eyes
and there was nothing for us to do,
except let you go.

For you, there was no more suffering,
no more pain and the
need and use of medication.

You are now in a place where you belong,
Heaven.

Now you can live in peace.

Sure, we will miss you dearly, but we
know you are up there looking down on us.

I am proud to be a daughter of a fighter.

Alannah

Vomiting is definitely the PITTS.

I know it has been one hellatiously long time since I got a chance to put something up on this blog....far too long.
Well...I guess Ol' Interleukin 2 knocked the livin' crap outta me. I ended up doing a short time in the chemo infusion room at the cancer center after the first cycle of IL-2 so I could get hydrated by IV along with getting some anti-emetics (man, I needed those!!). Over the last couple of months I have gotten so tired of nausea it is not even funny anymore; like it ever is. After my second round of IL-2, the one where I was able to do a whoppin' 6 baaaggs, I wound up in the hospital due to very high temperatures. One time my temp got all the way up to 104.5, and another it was 103.8...Sooo, I was admitted to the hospital once again to check everything out. The doc also figured he could get all the tests done on me in a more timely manner if I was admitted and staying in the hospital. Sooo, I got another CT scan, an MRI of the head, neck and spine, and...I think that was it...Of course, that's enough, right? heheh.
Thankfully, my MRI showed that as of right now, my brain is free of melanoma! I did have a couple spots in some cervical mets (my neck) and of course, all the ones that have been mentioned here before.
The doc also stated in his honest opinion, that for me, the IL-2 didn't appear to be working....My melanoma was still growing despite the IL2.
NICE.
My doc then offered up the Dartmouth Chemo Regimen as another treatment that may knock this crap down some...Something...Anything. Beat that SHIT back!!
So, shitty as this is, on June 2nd, my beautiful son's 7th birthday, I was in the hospital getting a chemo infusion that will hopefully keep me around for a long, loooong time....

I have never spent one of my kiddo's birthdays away from them...It was hard...but something I absolutely had to do...
That whole couple of days when I was first admitted this time, I felt like my emotions were running a torrent. The doc was very nervous about how things were progressing. He thought, obviously with my melanoma being so fast growing and aggressive, there was no time to waste with this chemo treatment.
So, Bring it ON!
The Dartmouth Chemo regimen is actually a few chemos put together, and is apparently very aggressive and harsh a treatment in its own right. I was actually kept in-patient at the hospital, which kinda confused me since I thought most people had this treatment done out patient, but oh, well. The nurses there are great, the docs are great...very nice and on top of things.
It can be harsh. I believe it now.
Lord, I feel like I have been sick, loopy, nauseaus, out of it, fatiqued...you name it....Ended up back in the hospital once again to get IV fluids and along with a more serious problem: Hypercalcemia.
Apparently, since I have so many bone metastases, quite a bit of calcium was spilling into my bloodstream and was making me sick. Dr. Biggs decided to give me an infusion of Zometa early on when I was first admitted, then, of course, upping the IV fluids. But there was also another new development since the last time I was admitted and discharged from the hospital: some of my lung tumors had grown enough that they were pushing down on my airways and obstructing my breathing; this was making me short of breath/winded all the time. Since my O2 saturation (oxygen content in my blood) was a little bit too low, I was ordered up some Oxygen to go home with and was put in touch with the company who would be supplying me with it for as long as I needed it...
Now the main object is to get me healthy, or at least very close to normal (my blood counts, or at least some of them, are still a bit low), so I can get another round of the Dartmouth Chemo. At first Dr. Biggs was saying it didn't look like I was having any response to this one too...He thought it was growing despite out best efforts to stop it.
After hearing his opinion, we figured it couldn't hurt to go to Philly and get Dr. Sato's (or Dr. Mastrangelo's) opinion on everything. Dr. Sato was of the opinion that it was still too early....wait a little bit.
Well, as it turns out, at my first follow-up visit with Dr. Biggs after being admitted for the hypercalcemia, he told Ed and I that he would like to show us my X-ray. He then pointed out a few darker and clearer spots in my chest where the melanoma looked as though it has shrunken or maybe even....some of the little guys may have been obliterated? HOPE. It is a powerful thing.

Aside from all the more heinous things that have been happening around here...there have been moments of sheer joy and happiness...

Friends and family have come together for us, gone out of their way to help us in any way that they can...I am amazed. I am thankful for all the things so many of you have done and I don't even know how to repay them in my lifetime...The cards, the gifts, your time that so many of you have given us.

There just isn't enough to say except Thank You and wish so much it was more!

A happy picture for a sad time

I'm still waiting for some good news, to get us smileing like this again. It's been too long. Anyway it's been another crazy week for us. Shannon is back in the hospital. Her blood counts were very low. Her calcium level was very high. She will be getting blood and zomedia, to try and level things back up. She has been very tired, and out of it lately. I would like to thank you all for the cards and gifts. It really means alot to know that there are so many people pulling for little ole Shannon. Thanks I will try to keep you all posted

Fear.

I do have to warn ya first...This blog is the most epic length I have written :)
I know it has been a while....But I guess, cosidering the circumstances, it obviously would make a lot of sense that I would be physically and mentally obliterated, rough treatement regimen that IL-2 can be. I have heard that quite a lot by nurses and other medical staff hanging about the oncology areas of the hospital.
"Oh wow...how did you get so sick...so quickly..? What regimen are you doing?"
"Interleukin-2," I say.
"AAAAAhhhhh......" or something along those lines is usually the final response, along with that look that passes over their faces of total understanding and recognition upon just hearing that word and little number: Interleukin 2.

Well, the way thiings look for me now, interleukin might be done. Kaput. Finito.

The 5 days in-patient, while I was receiving the IL-2 seemed to be smooth sailing...Well, maybe only smooth sailing where IL-2 is concerned, but whatever...
Aside from the extreme feeling of sleepiness, moderate fatigue and some loopiness, it went pretty well, until as in the first round, my heart rate went up along with my water weight. I was gaining too quick and fluid and crackles could be heard in my lungs again...But, I actually got one more bag this round than the first round.

Anyway, like two weeks ago on my first week off after round 1, I got sicker and sicker by the day once I got home. I would be home for a couple of days than the downward spiral would begin. My appetite would drop off drastically low, vomiting constantly, energy level bottoming out to the point where just to get up requires more energy than you have and walking makes you feel like you must be made of rubber or whatever material that Gumby dude was constructed from; or possibly even that morning after one helluva party back from your partying (like that) days.

In any case. Dr. Sato, one of my oncologists at Jefferson, told me that the IL-2 would make me "feel sick like dog" and I did.

This time, the fevers spiked sky high. 104.5 high at one point. At this point in time I had no idea what hit me, only that it came out of nowhere and I was actually having hallucinations and stuff. Some of them even really wild looking where the person you are looking at or talking to seems to be leaving a trail in your vision when they move. God, too surreal. No, I will be more to the exact thought I had then: Fucking weird.
The hallucinations in and of themselves didn't scream out to me FEVER, especially since I had read in the archives along with more current posts that hallucinations are possible with IL-2, even during that first week off (or as in some cases like mine, the only week off). The other option that had run through my mind was that due to my pain all of a sudden being even more out there in the stratosphere somewhere and a quick call to the oncologist on call (who as luck would have it, turn out to be MY onc) found me with my Duragesic/Fentanyl patch being doubled to 200mcg and Dilaudid double the dose until the patch kicks in. Whoa.

Loopy definitely could be a possible outcome of this hike in pain meds too.

But.
Then I got soaked....and I do mean soaked. Temperature was high, as I said, and it stayed up there for three days. Well, not literally, but as soon as the Tylenol wore off like clockwork, my temp would be up there or somewhere close.
Anyway....after that long overdue and extremely lengthy update.
Mentally, I am a train wreck. If I have said it once, I've said it a million times, I know....But this time, it is bad...
I am having a very very hard time trying to stay "UP" as much as possible. I know, in the reality in which we all live, no mood, even a positive one, is possible to maintain 100% of the time, 24 hours a day, 7 days a week, 365 days a year....

Not possible.

I have hit an all time low lately. I feel like one of those blow up things, I don't know...I guess from the sixties and seventies, that are shaped like a huge skinny eggplant with some cartoon character, usually of some cheesy pursuasion, that you smack and knock down but it just keeps rolling back up. Except my version would be defective since some of the come back ups take longer for me....especially the last almost three months now.

It started when I coughed up some blood on Sunday night.

I guess it goes without saying the level of sheer and raw panic that ensued on my part was through the roof. I can just picture Ed in my mind trying to make me laugh by saying "Yaaa Thiiiiink?!?" with that great smile of his.

I was blasted out with one nightmare after another that night. It didn't matter what position I rolled into (not that I can just "roll" into any position right about now, but whatever...figurative. I turned my head. LOL) anything to get out of that dream from hell....only to find myself smack dab in another one that woke me up simply from the dampness of tears on my pillow, my heart feeling like it was up in my throat pounding away....Three of them, if my calculations are correct. Just those types of nightmares where the aftereffects linger with you like a dark cloud, your body and mind feeling like you actually experienced what you did in that dream....They get under your skin....They haunt you.

Too many nightmares about death. Too many nightmares about the whole process of dying.

And worse....too many nightmares about leaving my husband and kids behind. Images flash before my mind like a slideshow: all from a future I am no longer a part of. The thought I can't quite bring myself to entertain...always skirting the edges of it, albeit against my will. They sneak in when I least expect it...Blindsided while doing the most mundane everyday things....

I cannot go there. Not yet. Hopefully, and God willing, not ever.

I normally try to be as positive as I can be, but overall, I guess I am pretty average compared to most people facing my type of diagnosis. Strength...this week, I felt nothing but defeated. Strange how feeling sick....and I mean really sick, can bring you so dangerously close of digging in a little bit too deep into pit of negativity and morbid thinking that it can be more than a little difficult to claw your way out of. I felt so sick...But the thing is, when you feel like complete and utter shit, it is far, far to easy to think about death...the whole process...too conveniently easy to slip....

And I am petrified.

Now, in the hospital this go around for my week off (harhar, yeah right. lol) I can honestly say that this has to be, hands down the ultimate chart topper just simply due to my volume of panic attacks (serious ones where I literally could not breathe) and crying jags.

I was instructed to get into the onc's office first thing Tuesday morning since my temperatures were staying high. I had to have some bloodwork done and have the Doctor give me a checkup to make sure this is typical IL-2 side effects that I was experiencing and not some other infectious process like pneumonia. The appoinment was mostly to determine if I would have to make a couple of treks back and forth to the cancer center to get IV fluids again, or just be admitted to the hospital where everything could be done in a more timely manner test wise especially. This was important as my oncologist wanted to bump up the dates of my post IL-2 scans due to my steady increase in pain in a few new spots in my bones. The CT and PET scans could be scheduled all within a couple of days while I was in-patient and he would get the results quicker, the cultures and other tests could be done with more ease, and I could get the IV hydration and IV pain control meds to get my pain more back to a manageable level. It all depended on how aggressive the doc wanted to be with all of this.

Hospital admission it was. Memorial Day weekend off, then back in the hospital we go. Saw my sweeties for one day then they came home on Tuesday to find out that I was back in the hospital again. Ed explained that since they saw how sick I looked and seemed, didn't they want me to go back and get all fixed up and better? Mopey okays were the response, but the understanding was there. I missed them too :(

Since being here though, it has been scan after scan after scan in just these 2-3 days. I felt so beyond sick...like death warmed over when I got here, and I definitely feel a damned sight better than I did, that's for sure!! But mentally.....HooooBoy.

CT scan almost as soon as I got here on Tuesday afternoon and a PET scan at the virtual buttcrack of dawn on Wednesday morning. The doc already had the results when he came in to wake me up Thursday morning.

"There has been significant progression of.....

I lost it. I mean I totally started sobbing, shaking and crying...It must be hard to be an oncologist. I didn't even need to hear the end of that sentence. I knew what he said. He told me that we probably would stop the IL-2, so I asked him if it was still possible that since the scans were two weeks early, that something could still happen? He said most likely, not. My disease progressed in spite of IL-2, so it would be his opinion that I was not a responder. He did tell me that the new sites were still within organs that already have metastases in them. Just more spots now. He also told me that some of the lung tumors are pressing on one of my major bronchi/airways in my right lung, so this would explain the shortness of breath. OH, and lest we forget the lovely episode of coughing up blood...SHIT. I wish I could forget. But I do believe that one is seared upon my brain forevermore. He also said the PET showed multiple hot spots in my bones. Not sure if these are new ones, but I do remember I had several of them. Another SHIT. And of course, my liver. He said that they didn't really get into the sizes of those, only that it said "multiple."

RRRR.

So tonight, at 10:00 p.m. YEP, that was 10pm at night, I was wheeled on down to the MRI department for a detailed scan of my spine to check for nerve compression or if the tumors could be affecting any nerves; to check for any impending or existing pathological fractures to those vertebrae. I will most likely be getting more radiation treatments to a few areas. The good part with this is so far *knock wood* the first two treated areas (the sacrum and right hip) seem to be the only spots NOT hurting right about now. So maybe it kept them at bay for a bit, and hopefully it will do the same for these other bastards!!

Oh. And another MRI of my brain. I think everyone knows how completely over the edge that one can drive me. Not that this singles me out in any way. Far from it. An MRI of the brain would, I am quite sure, have a very similar effect on most people with melanoma.

Wow....This has to be some kind of record-breaking blog as far as length goes for most of my blogs...and some of them, I gotta admit, are pretty damned long.

I just felt so alone and detached all week...Scared completely out of my wits, horrified, broken hearted, turned upside down...again....Yet I didn't even have the energy to pick up the phone, get on the computer...email people...post. **I think I made a permanent butt print on that sofa cushion**

It means the world to me, all the comments and caring thoughts so many of you posted to me. Thank you all so much. Every word and all of you give me strength....not to mention how HUGELY it helps to read all of your words!

As for me...I now enter limbo land once again. But if there is anything I know for a fact it is this: I think my melanoma and how aggressive it seems to be is even frightening the docs a bit...so I know things will move fast. The onc started listing some of them yesterday morning. He told me that he would confer with my oncologist at Jefferson on what the next course of action should be.

Gotta start cramming again on all of my options.

Sorry for not posting

The last round of IL2 wiped poor Shannon out. She got 6 bags this time. Was sent home Friday, felling pretty good. That all changed Sunday. Spiked avery high 104.5 fever, nausea, and coughing. The Doctor upped her pain & nausea meds., and ordered antibiotics. She did ok, but couldn't keep much down. Went to check up today, they admitted her back into hospital. Possible infection in lungs. We will find out more tomorrow. Sorry for not posting sooner but, but this week or so has been a total blur.

Ed

Post IL-2 haze...

Just realized it has been a while since I posted an update here, so here goes :)

Let me just start out by saying that IL-2 was whoopin' my ass in a major way...and the strange thing is, it got progressively worse. I was released from the hospital on Thursday evening, and Friday and Saturday, while a blur, lol, were not too shabby...

I did pull a bonehead and eat some Tex-Mex at a really good restaurant on Friday night with my husband and sister. Man, I shoulda known better than to pull a stunt like that!! Won't pull a major gross out factor here other than to say it was NOT pretty...

Come Sunday though, things went steadily downhill. I started out not being able to keep any kind of solid food down...then it got out of hand. I mean water?!?! WTF? By Tuesay, I called the doctor to ask for any advice they may have since I was already on an arsenal of anti-emetics; pill forms that I couldn't keep down, of course.

Wednesday the nurse called me back to check in on me and I was straight up with her. I told her that I basically felt like dog crap and had zippo for energy and couldn't even hold water or ginger ale down, it was that ridiculous. She told me to get my butt in there so I could get rehydrated with some IV fluids along with an IV antiemetic. Now THAT made me feel better times 1000.
The one concern is, however, that the doctor did tell me that if they cannot get my strength built back up enough, I would have to stall round 2 by another week. Monday would be too soon....

I would never have believed how severely mentally and physically fatigued you can get from just being dehydrated, but obviously, it's true. Well, that, plus I just did one of the most aggressive treatments known to melanoma patients:IL-2. That would do it. heheh. It was beating the living shit outta me, to put it lightly.

I can obviously only hope it is doing the same pummel job on melanoma right now as I type this.

The nurses even had an explanation for the delayed reaction of my flu-like symptoms. The IV drugs take a while to completely leave your system, so it wasn't unusual at all to start feeling completely baaaad on the third day home...I did have fevers and stuff the first couple of days, but that was about it.

On a funny note...Here I sat thinking I was just dozing away the hours while I was in the hospital...I felt like I had lost some MAJOR time while I was getting the IL-2, when if fact, according to Ed and my sister, I was all sorts of whacked out. I did actually hallucinate and hear things that weren't there...TAlked to myself a few times...Cussed the computer while I was blogging or posting, thinking the blasted thing broke, when in fact it had only gone into energy saver mode, it took me that looong to make a post...Oh, and the bizarro dreams...They told me all about a few of them that I woke up from in a complete state of panic. Then they laughed when I told the nurse I always have vivid dreams..."What about the mutant wasp-hornet woman, hon...what about that one?" Ed says...

Oh, and to all who know me and my obscene soda drinking habits. WEll, now that is no more. Strangely enough, I could not even tolerate the taste of cola...well, of anything, really, but cola just hit the switch right away. So, no more soda for this chick. Believe it? This from a woman who was lucky to get through a day on less than a 12 pack case of cans of caramel cream Pepsi Jazz. lol. The strange coincidence is that I know diet sodas are very bad for you for a number of reasons...

And that was the one thing I still can't tolerate. Yuk.

Oh, and along with having my IV anti-emetic, my doc finally prescribed Marinol. So far, so good! (Thanks so much, Jane, again, for your excellent advice!)

On another note, I am getting more and more excited and anxious to finally meet my good friend Amy! I know it won't be the prettiest of cirucumstances, by far, but still, I am ecstatic and I can't WAIT to meet her. We have been emailing, and talking on the phone for almost 4 years now...It is going to be so GREAT! This MOnday is the big day, whether I get to start Round 2 or not. I am so thankful for her husband being so understanding about hopping on a plane to come all the way out from Texas to come sit with me...so wonderful and caring of him.

Mostly, for today, I am filled with happiness over the fact that it is a beautiful day outside, I feel better than I have in a whiiille (knock wood) and things are good....so good for so many reasons....

I Feel Like a Big FAT BABY. A WIMP.

Well, it would appear that this cycle of IL-2 is done. Kaput. The End.

I got a whoppin' 5 bags of the stuff...Yeah, folks....Five; and Man, if you don't think that I haven't been beating the living shit out of myself mentally for it you would be sorely mistaken.

I don't think I spent a collective 10 minutes this morning not crying and wallowing in that annoying self pitying state that makes most people wanna nail you upside the head with a 2X4.

I just can't believe it!

I was all set to kick some ASS. Show stinkin, shitty ol' mel who's the boss here, anyway!! I had HUGE hopes of this being a total knockout. Total Annihilation.
Buuuut. I have been known to let my imagination run wild....To reach for the stars. But in this case, I was sent back careening at breakneck pace, slamming back down to Earth, beautiful Planet that it is.

Five bags....I just couldn't believe my fucking eyes, ears, you name it. People on the support forum that I read, MPIP (Melanoma Patient's INformation Page) have done many more. One or two haven't....but alot of them have done quite a bit more.

In my case, my body just didn't want me to have any more.

My heart rate skyrocketed causing the team to order up a heart monitor with electrodes to be slapped on five different spots on my upper and lower chest. Because it stayed up, I had to skip my next sceduled dose. It eventually went down after that first time it hiked up. Not to my normal range, which is around 80-90, but still under 120, which is the max it can hit to still be given the IL-2 dose. As I mentioned, it went down to around 105-115, so I got the next scheduled dose for 8 hours later. After that dose, it soared up too high once again, and it just wouldn't come back down into the realistic realm of IL-2 dosing possibility.

10:00: I had to skip my 6th bag. Heart rate too high. The slightest movement caused the handheld monitor to read numbers in the 140's and 150's along with the words PATIENT ALARM PATIENT ALARM PATIENT ALARM!!

6:00: Second shot at getting that 6th bag. Heart rate was STILL too high, and I had gained far too much water weight gain for the doc to feel comfortable about giving it to me. In addition to that, they could hear fluid accumulation in the bases of my lungs. Not good.

I woke up this morning to the news that they were halting this round of IL-2. It was going to be stopped. I immediately burst into tears. Reasons and excuses were given, much like the ones I had listed above. I was told I would be staying here in the hospital until either Friday morning or maybe afternoon, so they could administer some IV Lasix to make me lose some of this water that I have taken on.

My oncologist just didn't feel safe or comfortable with going any further with the doses right now....I will be going home. No more IL-2 for this round.

I am still on for Monday May 21 for my next round; the second round in this first cycle. Hoping like hell that now that one will have to be my time of reckoning.

It's so hard, because I know I hung such high hopes on this treatment...To be told I (or to be totally and completely fair, my body) could only tolerate 5 bags was a blow. A sort of mild one, at least in respect to the blows I have been dealt over these last few weeks, but still a blow.

Also to be fair, it isn't all or nothing....and nothing means the end. I will get to come back on May 21st and try once again to kick some ASS! Come Hell or High Water, that is what I hope like Hell I get the chance to do at that time....

It is also so very hard when you build your mind, your thoughts, your hopes, your dreams up so strong. Get ready to fight in all the ways you can. Be brave. Be strong. Be courageous. NO matter how scared you are of whatever may be staring you in the face, be courageous and face it head on. Convince yourself that no matter how tough things get, to keep plugging on through it. This is necessary. Your WILL is something YOU can control.

To a very large extent, your body isn't. You can't control how your body is going to react and respond to any number of things that it has been wrought with. You can only plan and prepare so much for what may happen....but in the end, it is all unpredictable at best. You have to roll with the punches...and no matter what comes blasting out of the water and flying at your face, threatening to unhinge and undo you, you have to dig in your heels , alter your plans a bit....pick yourself up...and still....

Be more than ready to fight.

I feel....Out of it.

Yep. That about sums it up. Out of it; in a daze and possibly something resembling a drunken stupor. My mind is not quite blank, but close...


In a zone. Everything in slo mo. That, plus I am bombed outta my wits. I could probably give a narcoleptic stiff competition right about now, just dropping off to sleep in the middle of reading things, posts on MPIP, etc. My eyes are so lame and weak I have literally felt them cross toward my nose as I have tried to focus on something...or even more horrifically, someone, when they are hoping to hold my attention.

Just flat out pooped, to put it mildly.

Well. I ended up finally getting that 4th bag of IL-2 last night at 10:00pm. However, not long after that, I started getting the rigors. Got a bit chilly, then the next thing I know I was shaking uncontrollably almost as if I was having a convulsion. Annoying to say the least. AAANNND, it made all my bone mets scream out in harmony with pain. Fun, it was NOT.
But the nurse came in with some Demerol and it worked within minutes to control this absymal "fit" of the shakes.

Overnight, I was dragged outta bed in a half doped up still not quite half awake zombified state to be weighed. Since I had been having some bizarro twilight zone material type dreams, this huge assed contraption they have to weigh the patients freaked me out, no lie. "We Just want to weigh you, that's all" the nurse said, calmly.

My eyes poppped out of their sockets when I saw that I had gained 12 pounds in water weight gain already. My eyes are so puffy they are almost squeezed shut. Lord.

My O2 saturation was a little low, so I had to be put on oxygen for a few hours, which didn't make too much difference to me, even though under normal circumstances, having those two hard plastic prongs stuck up your nostrils is annoying at best, it was the buttcrack of dawn, so I figured I could go back to sleep and sleep through this less than stellar shit.
Oh...and my heart rate was near 150, so I had to skip bag 5 too...

Damn it all.

Okay. I absolutely have to lay here all zen like in a state of meditation, trying not to move around too much and trying not to get too agitated, because if I do even one little thing, this touchy little bastard that to you would look like an ordinary portable heart monitor will show numbers that jump from 115 (which is still way too high for me!!) all the way up to 148-150). UGH. I have to keep these heartrate numbers down so I can get my next IL-2 dose which is scheduled for 2:00 pm. I have far too many tumors lurking about that need their comeupance, and I plan on getting as much of this IL-2 into my system as is humanly possible for me, anyway.

Hopefully it will OBLITERATE IT!

I am holding my breath.

3 Bags of IL-2 down, but not without a hitch...

Weeeelll, I am now in the hospital receiving my IL-2 treatments. I have now received 3 bags.

First, as of yesterday morning, I had to pop in to see the oncologist for one final go over, just to make sure everything looked just right to begin treatments. Just that one last checkup.

Then it was off to be admitted to the hospital's bone marrow unit and get checked into my room. Talk about a NICE room. It is HYUGE! Only got to linger there for a little bit of time before someone came to fetch me for my PICC line installation.
Let me just tell you, that was wierd of the highest order....Well, maybe not the highest, as I am sure there are many, many stranger things in the freaky world in which we live. All the same, it was bizzarro. I stared at the x-ray display of that thin catheter going all the way from my upper arm as it looped downward toward and into the area of my heart.
Not only that, but I could see quite a few dark spots in my lungs, which I assumed are my lung mets. Lovely.

But.

I partly wondered too, if by my next round, which will be May 21st, if while they are inserting the PICC line that time, I can peek once again at those x-ray pics....and if those spots look smaller.....hmmmm. I wonder if that would mean what I would think it would mean? Wouldn't that be nice?

As a side note, when I went in to speak with the oncologist on my May 3rd appointment (last Thursday) he told me that another sign that might indicate that my tumors are responding to the IL-2 is that my pain my lessen.

I blurted out "HEY-YEAH!! A BONUS to these side effects!...finally!!
Both the doc and my husband looked at me like I had lost my mind. heheh. Actually, that happened a lot longer ago than that very moment.

As far as side effects I have experienced so far from the IL-2, mostly, I have just been tired and out of it off and on. Sometimes I am more with it; other times...I am NOT.
Oh, and of course, I have had the nausea...fabulous. AS a couple other people who have done IL-2 have mentioned, the vomitting was reminiscent of the exorcist. I know...too much info there. But it was as always can be expected from the technicolor yawn, nasty.

Now, I am sitting here feeling like a wimp...They had to hold my 4th bag because my heart rate shot up too high. I also had a temp of 103, which they think may be playing a part in why my heart rate shot up.

I did mention to them too, that I was recieving an anxiety medication on a regular basis before my hospital stay, and that now (at that time I found out the dose was being held) I didn't remember when the last time I had it was. I was moody times 1000, and my anxiety was definitely ramped up into the nosebleeds section. Had to go through this whole round and round about which doc ordered the Xanax, so I told them which docs originally ordered it, however, the onc in charge of the IL-2 actually ordered Ativan instead, at twice the dose. So I asked them if I could be given that on a regular basis since that is how the doc ordered it. That may help my heart rate go down too...to have less panic attacks, I am sure ;)

I don't know....I just go completely batshit crazy over things that are totally out of my control....I am wiggin' and completely spazzing out over whether or not my heart rate is going to drop down below 120 now...It doesn't seem to be...so I panic some more....and of course, I know this doesn't do anything to help in that department...

Good Lord.

I need to chill. Just haven't figrured out how yet.

All I do know is this: I damn well better get more than THREE stinkin' bags of this stuff, or I will be ripshit mad. GRRRR!

WE will see...sigh.

My Brain is Baked...but CLEAR.

Well, I finally got the news today, after bugging the shit out of that poor nurse at the onc's office.

The MRI of the brain is CLEAR. Thank GOD.

I mentioned this on MPIP, but I literally felt exactly how I would imagine I would feel if I hit the PowerBall jackpot when it skyrockets over 200mil.

Strange, the things that can make you burst with such intense happiness once your life has been forever altered by shitty ol' mel. I mean, this crap is all over my body...Well, not in my heart, kidneys or digestive tract, but in a TON of other spots...
But to hear that my brain was clear and showed no suspicious lesions was like my prayers had been answered. At least some of them.
Now, after all the punches I have taken from melanoma in the last couple of months, I can throw a few myself.

The nurse did tell me that they saw a spot on my skull bone that looked "highly suspicious for another bony metastasis."
But at that time, all I was thinking about and all I said to her was this:
"But my brain was totally CLEAR, right?!?!"
She said, YES.

It does suck about that skull spot, I can't lie...but hey, no skull spot is going to stall the IL-2 on Monday.
It does freak me out a bit...Okay, a LOT...since that is getting a weee bit too close to my brain...

But.

My brain was clear!!!

Now that is reason enough to party. Hell, once you have melanoma, or any cancer for that matter, any good news is reason enough. Or maybe you don't need a reason. Party, if by partying it simply means soaking up all the joy you can get out of life and having the most fun you can doing what ever you think is fun, then Party On whenever the spirit or whatever else moves you.

I do see the oncologist tomorrow, but not until 4:20pm. Now anyone who knows me knows good and damn well I would NOT have waited patiently for that MRI result. If I had to have waited much longer, it would not have been pretty. Weeeelll, it already wasn't pretty, but who cares.

Hopefully not a blessed thing will stand in my way now, the oncologist will give me the green light to go commence to giving melanoma the beginnings of a HUGE ass kicking it so rightfully deserves on Monday.

And...I am armed with some great advice from some great people that I have "met" on MPIP. I will try to barter with the nurses for Marinol (Thanks Jane, for that tip plus the tons of others you offered up!) if I feel nauseated...that one is for certain, because I have had it up to my eyeballs with nausea lately.

I have been nauseated every time I turn around these last couple of days. My appetite just isn't quite right...I lost 4 pounds in 3 days...

Maybe it is those "multiple" liver metastases. I believe I read somewhere that is one symptom that can sometimes show up, among others. Sometimes there are no symptoms, but it would seem I am not quite that lucky. Just haven't felt all that great the last couple days...Too many in my face reminders that I am in fact "sick"...no, check that, very sick...when I would so much rather believe I am NOT. I don't much like acknowledging that little (or not so little) fact.

I am just me feeling a bit off. I would so much rather make like an ostrich and stick my head deep down into the ground. Unfortunately, that option is out right about now.

Being sick though, we can all attest to the fact that that stinks no matter what the cause. I just go on, pretend I am not in most cases, and do whatever I ordinarily do...But nausea, that one is f**king hard as Hell to ignore...I don't much like feelin' like crap.

But today...Now today...I don't care what I felt like, it was a GREAT day!

On another note, I just got a really cooool book. I would recommend it to anyone. It is called There's No Place Like HOPE by Vickie Girard. I actually saw it on Miss Melanoma's page (Thanks Lori, great book!!).

It is so honest...not even halfway through it and I was already laughing, crying...you name it. It's great...

HOPE. That's right.

Too much thinking can be a bad thing....

As I sit here worrying myself into a borderline panic attack over whether or not my MRI of the brain will be clear, one thing stands out as true in more cases than not: Allowed too much idle time to think about anything bad, and your mind always wanders and fixates stubbornly on that worst case scenario.

Then, if you manage to avoid the depths of insanity that can result, it takes a whole boatload of work to climb up to a more positive frame of mind...

This fear...It comes in waves. Like the tides...

I am not completely sure about this, but I seem to remember reading that if I have brain mets, IL-2 is out until they are taken care of. However..I can't remember for what reason; only that I saw that somewhere.

My luck can't be that bad, can it?

Let me just interject here by saying obviously, I hope like hell I DONT have brain mets, cause damn, I deserve a break somewhere. Just a little selfishness there...I do realize I am no more special than any other warrior who wound up facing this battle for their very life...

But....I want a turn.
IL-2 is MY turn.

Melanoma has beaten me down this last couple of months.

There, I admitted it. Don't like it much...in fact, I downright despise how low I let it sink me, wipe me out...threaten to steal my hope-my thunder....That will to fight has always been there, an undercurrent...Just sometimes more deeply buried than other times...

But IL-2...That is MY TURN to kick some ass, and no matter how nasty it does or doesn't make me feel...My ass will hopefully NOT be the one being kicked!!

Monday, as long as that brain MRI is clear, will begin my days of reckoning.

Until then, taking it one day at a time...Learning to truly appreciate and cherish every day I am given...
And of course, try to stay sane. My kinda sane, anyway ;)

The Monkey on my back...It's [melanoma] everywhere.

Well, Hell's bells....
Today I came pretty damned near being blown away. I got back the results from my CT scan last Friday along with my PET scan from Tuesday.
There has been significant progression of this shitty intruder, interloper and spoor of the devil that is otherwise known as melanoma.

To say it is a scourge would be a gross understatement.

I have a whole boatload new skeletal metastases; a new crop of 'em in my spine/vertebrae. The PET scan showed T5, L1,L3, L4, Left Sacrum (this one, I knew about), bilateral iliac wings, left proximal femur (GREAT, it's in both my hips now!), bilateral distal femora, bilateral femoral midshafts, and left proximal tibia, left proximal humerus along with a bone met in my sternum.
Two new Sub-Q's--one in my left thigh and one, believe it or not right smack in the middle of my right buttock.
Multiple new liver nodules/mets.
Lung mets in both lungs have all increased in size: some have doubled in size--around 2 cm from just under 1cm before, one in particular is now over 4cm x 3cm; three new ones have spawned between both lungs. New hilar and mediastinal lymph node mets.

Soooo....Basically it sounds like it's pretty damned close to everywhere...
We'll see what that brain MRI that I had today has to say...Hoping my brain will still be spared from this blight.

I just can't believe it....Basically I was floored; obliterated once again.

Oh well, I know what I gotta do. Cry and rail and freak out...scream at the top of my lungs until they give out, yank at my hair, beat my head on the wall and cry until I am dried up then drop, in an exhausted heap, if that is what it takes to purge all the toxic and negative emotions from my system for a bit; get it out of my system and keep on keeping on.

Now all I can think about is no longer how petrified I am of IL-2, I am SOO much more than ready to give melanoma some hell!!

BRING IT ON!!

PET scan from Hell and other musings from the land of the lost...

Well, God DAMN. That had to be the single most irritating experience in this whole melanoma ordeal yet.
Weeelllll....Maybe NOT. But it ranked up there, that's for sure.

A PET scan on a good day can frazzle the most calm cool and collected person's nerves even just the tiniest bit, but after having this kind of scan on three other occasions, I can honestly say that this time, I was comin' pretty darn close to snappin'!
In general, my day up to that point in time, was an exercise in futility...so it was only fitting I should have a fabulous time in the PET scanner to boot.

I shoulda known when the teacher in charge of the "re-direction room" called to let me know that they had my son in the in school suspension room for passing hateful little notes with one of his friends to his big sis. Now at this age (my son will be 7 in about a month), a child's idea of mean is to do something that would be very embarrassing to the target; something that would make the target the butt of a joke. Usually it consists of something they think is "gross." You know...first graders and toilet humor. Well this went a little beyond that, and turned out to be something humiliating to both myself and my husband in addition to his sister. He and his friend literally had no clue the full meaning and ramifications of what they were doing; they only thought they were being "gross and funny."
Hmph.
Back and forth on the phone with the redirection room teacher, who also happened to have a nasty case of laryngitis and was barely audible.
Then it was off to have the time of my life on a too narrow, hard cot-like structure that passes through what looks like a hard plastic donut at a snail's pace. NO, check that....slower.

But first, I had to get to the hospital and find a decent parking spot. AS IF. I circled around all the somewhat closer parking areas, watching with dismay a half dozen or so other vehicles cruising the area like vultures to carrion any stationary vehicle in a parking spot that happened to have the brake lights lit up.
Aww, Hell.
Further down to the next lot over.
Waaahhhh. Do I sound whiny, evil and sarcastic yet?

I ended up parking a country MILE from the main entrance to the hospital. I was just lurching along in my ,sore and lame assed way when I heard a couple of other people in the first parking lot freaking out on each other over a parking space...Whoa. Nice.
Made my way through the labyrinthian hallways of the main hospital building to Station #10, PET scan department. Now, from the name, I am not sure if I would be completely off the mark in deducing that there would be a few PET scanners.
NO.
There was one.
It was backed up.
So, after my half hour (no LIE) long trek to get to the PET scan waiting area, I called my husband up spur of the moment like, and asked if he could bail outta work to get home for the kids when they get off the bus. I told him I had to huff it on foot about a mile from my parking spot, and it took me at least 20 minutes. That, plus the PET scanner was backed up. I would only have a very narrow margin of time to get home...
I only had to sit in the waiting area for a short time, believe it or not, when I was called to the preparation room to have my FDG injection and my quiet reading/nap time (*you have to sit still for an hour*)...This was not the issue. I was just reading 100 pages or so of my book when I caught sight of the time.
HOLY Mary MOTHER of GOD.
An hour and a half had gone by. There was no sign of a tech anywhere. I thought they had forgotten about me. I had horror visions of a few more hours going by then BLAM! all the lights going out in that department. THen she finally poked her head into the room like a turtle.
"What in God's green Earth is going on? I have been sitting here for over an hour..."
She just told me how backed up they were and with only one camera it really slowed things down.
I'll say.
When I finally got into the PET scanner, I was already ready to strangle someone. Let me just tell you, that is one narrow table! Not only that, but they have to bind you up tighter than a mummy in order to hold your ass completely still. Even more, this particular PET scan facility had this lovely "head pillow' as they called it. They were pushing my head into this hellish contraption more closely resembling a Chinese torture device than a pillow, that's for sure.
Then I only had to lie there. For another hour and a half.
I was bawling my eyes out like a big fat ninny baby by the time the tech finally came to release me. My head was exploding with a migraine straight outta hell, I was achy in spots I never knew existed, my stomach was chewing itself inside out from the extreme hunger of not having eaten since the night before, and I was flippin' out for a fix of caffeine.
OKay...now that was a nice example of being a "whine bag complainer" as my husband and I call it.
But that wasn't all.

I had to lurch and huff it all the way out to Timbuktu to where I had to resort to parking. The lot stretched out into the great beyond reminding me of those shots in horror movies when a person is trying to get to an exit; a way out....and the hallway or wherever they are stretches out unrealistically far ahead of them.
Then there was the beginnings of rush hour traffic to contend with. RRRR.
This was just unreal to me, considering the fact that I got there at around 12:30. It was now closer to 5:00.
HRUMPH--an almost 4 hour PET scan. What the fuck?!?!
I suddenly remembered, at one of a million red lights that I hit on the way home, not only that I had forgotten my XANAX, but also that I had taken out meat to make a cool meat loaf variation that I had thought of, and I would not have time now to mix it up and throw it in the oven and let it bake for a couple of hours.
NOt if we wanted to eat before 8:00p.m.
Oh well....We would just HAVE to go out for dinner. That is never something to complain about in my book, and I was all for it!
So we all piled in the Durango and hit the road for Jake's, which is an awesome hamburger and shake place that wins all these awards in this area for the best hamburgers and shakes.
Now that was a treat, and a fine and perfect ending for an otherwise shitty day.
Then they forgot my sweet peppers.
Good God, what next?
Really, though, you should never ever utter those words for obvious reasons....Most important of which is this: You are sure to find out.
Good God, if there was a day I coulda stood to get annihilated, intoxicated and trashed on any mixed concoction of the alcoholic variety it was this one.



But then I remembered I was on pain medications....and most sane and rational people know that pain meds and liquor are not to keen a combo...Oh well.

Tomorrow is another day.....

Something I forgot to mention....

Got off on a rambling tangent before when I was posting and totally forgot to mention something that happened this past week at radiation oncology on the day of my last radiation treatment.
It moved me to tears...
Then again, it hasn't taken much to do that lately.
In any case, it was emotionally powerful, all the same

I was bulldozing my way out of there, as is usually the case at the end of each treatment since my stomach is growling like a sonofabitch after smelling everyone's incredibly mouth watering scented lunches (my radiation appointments were ALL around noon!) and a lady who was normally one of my regular radiation techs but wasn't on that day, stopped me as I walked out with the tech I was with that day to say goodbye after hearing that it was my last day.

I was then told to "ring the bell" because that is what all radiation patients do when they are all finished up with their treatments. It's a tradition, they said.

I looked at them both as if I were a complete moron, utterly clueless about what in god's green earth they were talking about.
It was a semi-large bell, mounted on the wall right by the tech's station outside the radiation rooms. I don't mean that it was Liberty Bell huge, but it was decent sized....loud enough when rung that it could be audible within a pretty wide vicinity.

Anyway, I got to ring the living shit out of the thing.
I melted into tears...big FAT tears, but of joy this time, upon looking around as people came out and applauded. Then I was wrapped in huge hugs by both women who were two of my four regular radiation techs.

They both congratulated me and wished me only the best of luck fighting off stinkin' ol' mel (okay, that "stinkin' ol' mel part is really my words, but oh well...) and instructed me to come back once in a while and let them know how I was doing.
They both said people never come back to visit--to see them, and they hoped that I would....

Let me just interject here by saying that it never fails to amaze me, people's capacity for caring and genuine kindness in the face of an insidious disease such as melanoma. I have been shocked, awed, and floored, along with having a considerable chunk of my heart that was starting to harden up, soften up to mush...

Me...just a grown up version of that oversensitive and completely over the top emotional kid that was picked on and bullied unmercifully back when I was younger....

My faith and trust in people and their capacity for kindness had been shattered before being stricken with this shitty disease.
Aside from my husband and his family, all of whom I will never stop admiring, melanoma, blight that it is, has shown me something wonderful...

Something that before it, I had almost given up on...

Human kindness, compassion, and caring.

And what a gift that truly is.

Spring is FINALLY here! And some other stuff...

So much has been going on here that my head has literally been spinning around 360 degrees.
Of course, there has been everything that I have been facing and my family too...but also, some very dear and close friends of ours are going through a very difficult and heartbreaking time right now. We have been trying to be there for them and to help them whenever we can...Out of respect for their privacy, I will not go into any more detail here on this blog on what they have been facing...
Just explaining why I have been very scarce as far as giving many of my other friends calls, keeping up with emails, and this blog...

I think I mentioned in my previous post, all the scans and tests that have been required of me to get done in order to get the "all clear" to go ahead with IL-2.
Just had the CT scan this past Friday...Now I don't care how many of these you have to get done as a melanoma patient, or any cancer patient for that matter, it NEVER gets easier...the test itself, never mind the jack nasty contrast stuff they make you drink...but enough about that.
If I had to admit right now, which test scares me the most, clearly it has to be the MRI of the brain. The nightmares have been running rampant every night, let me just tell you...
In one of them, I was shaving my head because the WBR had made most of my hair fall out, and I was left with a scabby skull covered with bald spots and patches of thin scraggly hair...I was looking in the mirror at my scary image and shaving my head...It was then that I jerked bolt upright with a gasp only to see my clock radio, bright neon red numbers glowing in the 3:46 am darkness, and breathed a sigh of relief that it was, for now at least, only a heinous dream....

So, I am now all finished up with my radiation treatments to my right hip and left sacrum. I can actually say I don't have any pain left at all...or at least very little pain, in my left sacrum (low back/back pelvis)...However, I still feel quite a bit of pain in not only my left hip, but also my left knee.

I found out why the knee has been giving me problems, and it literally floored me....of course, not nearly as much..not even in the same stratosphere of that initial X-ray, but that was a false alarm, and that GOD it ISN"T melanoma! That goes without saying...

I got to go see the physical therapist for the first time on Thursday morning. Turns out I have quite a bit of muscle wasting, weakening and atrophy in my right thigh from favoring that leg (the one with the hip met). He could tell from the moment I walked in the joint that I had hip pain, because of how I walked...what a trip. Anyway, as I was doing all manner of leg lifts, he instructed me to put my hands one on each thigh in order to feel the difference in strength versus weakness. My right quadriceps muscle is basically mush. Not much strength left in that one whatsoever. Scary how quickly our muscles can deteriorate with a lack of use. My muscles in that leg had weakened so much that I could barely lift the leg itself much off the table.

And to think, I used to work out regularly until all of this...and I am still fairly young..at least *I* think so ;) HA!

Not only that, but my OTHER leg--the left one--is the one that I had the primary melanoma and all the sub-qs and in-transits, then ultimately a lymph node dissection with muscle cut/flap rotation and finally limb perfusion...So now THAT one is the "strong" one. How whacked is that?

Anyway, he is going to work with me and get me all set and back as close to my old self as he can. He said that he believed my knee joint/knee cap has actually been weakened due to my quadriceps muscle being so weak that it isn't holding my knee cap steadily in place...leaving it to rub and grind around above that joint, causing a lot of pain.

An another note...I have a new pain...and anyone who is a mel patient can definitely sympathize with this one, but ANY new pain whatsoever, especially at stage III or IV, is cause for a virtual panic of potentially epidemic proportions if prompt intervention isn't sought out...I now have a new fairly strong pain in one of my left ribs...It just came about a few days ago, and has been getting steadily more severe and more constant.

To say that this is flippin' me the fuck out would only cover half of it.

I am so worried that this PET on Tuesday is going to light up like a Goddamned Christmas tree. Hell.

Oh! Another cool and sweet thing my hunny did for me was to order me up a laptop/notebook computer for me to use while I am chained in my hospital prison for those few stints of a few days at a time. That is, if I am not feeling too much like dog crap at an estimated 212 degrees farenheit from the IL-2. The hospital where I will be receiving the IL-2 has available computer connection/access, so this will help me SOOO much...because aside from Ed, I most likely won't be getting too many visitors. It is so hard...Much of our family is still working every weekday, and my mom and dad have so many health issues of their own.

I know for a fact that they won't be making the trip...

And since I tend to get very VERY depressed in the hospital, this laptop is going to be a help. As I said, so long as I am not in a complete state of severe fatigue and loopiness and am at least, close to totally coherent--heheh.

I guess that is pretty much it as far as what has been going on here for now...

As always, I am moved so much by all the support, emails and comments I have gotten from so many of my fellow MPIP-ers and friends online, in addition to all the love and support from my family and friends so far....I know for a fact that I wouldn't be half as strong without it. No exaggeration.

Pity Party and Rant fest

ALright....Where the FFFFF..*ahem*, HELL is spring, Goddamn it?!?!

Okay. Got that outta my system again, for a little bit.

Now on to my regularly scheduled gripe and rant fest: As seems to be the norm lately, my emotions have run from one end of the spectrum to the other and all points in between. I have gotten mad, screaming practically stark raving hair tearing out mad; bawled my eyes out until they burned and were just about swollen shut; and very very occasionally felt that irrepressable drive to fight like hell...that has surfaced a couple of times anyway...

For the most part...I guess I have just felt completely wiped out...Obliterated. My mind, I would swear, sometimes feels completely blasted out...

As for the radiation treatments, I am now done with treatment # 12. Two more to go, then all the IL-2 testing begins...That'll be a circus I am sure...and not in the ways that make you laugh. Course, that's not to say that I won't seek out things to make lame and sometimes disturbing jokes about later on....

My schedule is going to get even more insane; not just in the time crunch way either. By the end of next week, if I am not in a padded cell with four point restraints getting regular injections of Thorazine, it will be nothing short of a miracle.

Friday (this week) I have to have a CT scan to re-assess my metastases...I am assuming it is to check and get current sizes of the existing mets, and scarily enough, to make sure there are no new ones *I HOPE THE HELL NOT*

Then on the 24th, it's on for another PET scan. At the semi-near buttcrack of dawn on the 26th I have to go back in for a Cardiolite Stress test, then on to an MRI of the brain around lunchtime. Let me just interject here by saying that this MRI of the brain is freaking me out ,by far, a whole shitload more than any of these other tests. For obvious reasons: I hope and pray with all my heart that there is not an eeeeviiiiil melanoma met sinking its claws into the flesh of my brain, but also the less obvious: baby that I am, I gotta confess...I DONT WANT The HEAD CAGE! *cue Psycho theme music*

That thing freaks me out. I'm not kidding.

Then, the 27th is pulmonary function test day. I go in to see the oncologist on May 3rd, I am supposing to go over all these test results and to have any more iL-2 related Q & A...I am sure I will come up with another book's worth of questions, too.

As it stands right now, the date for my admission to the hospital for high dose IL-2 is May 7th. To say that I am scared shitless still somehow doesn't seem to do the sheer magnitude of my raw white hot panic justice.

Don't get me wrong...I am far more than anxious to kick melanoma's nasty and evil ass...but I would be lying if I said I wasn't scared outta my wits.

It just occurred to me that I neglected to mention what my decision was about where to get the high dose IL-2 administered. After a LOT of hair tearing (surprised I don't have bald spots yet), I finally decided to go with the hospital that is close to my home. I can only imagine how this might confuse some people...they may not understand it, considering the alternative, St. LUke's Hospital, is a highly respected institution more than skilled...experts at giving IL-2....Ultimitely, it came down to personal and private family reasons that steered my decision. NOt that I haven't seriously made sure that Helen F. Graham is highly skilled...I have. It is a relatively new place, in the beginnings of making and establishing a good reputation for itself.

The doc and the whole staff that will be in charge of my care while on IL-2 have been rigorously trained by the staff at Pittsburg, which is another IL-2 certified and respected place. I will be receiving it in the bone marrow unit, but will be under the care of only the docs and nurses who have been trained thoroughly in giving the IL-2. I will be getting the care and nurse to patient ratio that is comparable to that in the ICU...

Plus, I got to chat on the phone to another young woman who has actually completed her course of high dose IL-2 there. She is a 21 year old stage IV melanoma warrior...and even after chatting to her once, I could tell she is a fighter...Anyway, she couldn't say enough good about this place...

I feel a little bit guilty about not going to St. Lukes, if only for all those amazing folks who were so caring as to offer to pop in and see me while I was there...I feel bad about that...still wish I could meet some of you :(

Anyway...that's where things are at with me right now.

On a side note: I was majorly pissed to find out that I was completely blown off for that Family Circle article. Kudos going out to those women who were actually published in that article to speaking out though! I just got so steaming mad...That chick sucked up over two hours of my time..two separate interviews..Plus, she asked me to email her some digital pics of myself and myself with my family.

A second woman even contacted me saying that she was the fact checker for the article. She read me, word for word, the article as it would appear in the mag. She told me this was how it would appear. She told me they were using my story, and that the issue was going to be out mid-April. WTF. Why did that wench have to go and lie to me like that...that just ain't right, and if I had half a mind to, I would be filling her email box with a hefty dose of hate mail. LOL.

Well...color me retarded...once again.

As for that article I sent in to that local magazine, I haven't heard back from the girl I shot the email off to yet... :( :(

Bummer. Oh well...hoping I will get a chance to speak out some day....

My melanoma history, lymphedema, IL-2 and other evils.

Just another post of rambling, babbling and general diarrhea of the mouth...or more aptly and specifically, fingers, since I am typing, not talking.
It just occurred to me that I never really posted my melanoma history anywhere on this blog; well, at least not an accurate and more detailed description of all the vast array of crap that I (and many other melanoma patients) have had to go through in the last 3 years and approximately 8 months or so. I did have a vague summary as a first post, but that was about it. So aside from the limb profusion last fall, which I did post endlessly about, everything leading up to it hasn't really been mentioned.

Since I am a veritable computer moron where some things are concerned, I am not quite up on how to link to my Patnet on MPIP...so, here goes:

*Note:Boring post alert to anyone who has heard all of this to infinity and beyond. Just figured I would get it down in case anyone was curious, even if it is a longshot. heheh*

It has been a long road since April of 2000, if I want to be completely accurate here, since that is technically when the butt ugly mole first decided to rear its head. I was preggo with my second child, my son, cute lil' man that he is ;) But being one of the worst procrastinators, I just watched the thing as it grew, mutated, changed colors like a kaleidoscope and just in general, became more threatening.

Had it biopsied in May of 2001, and was only told that it was "benign." Despite the insistence on the derm's office's part that I was supposed to follow up, in my most accurate recollection, that is not quite how *I* remember it, AT ALL. I had to insist on the biopsy in the first place, despite the derm's warning that it would leave an ugly scar, and his insistence that melanoma is rare and just never happens much with younger people (I was 29 at the time). He literally whipped out a single edged razor blade for the biopsy. I'm not kidding. At the end of the appointment, the dude gave me a pat on the hand, told me to not be embarrassed to come back if it came back benign, because, in his most infinite wisdom, he was certain it would.

Well, obviously, the nasty sucker came back. But after being told it was benign, I chose to ignore it for a couple of years...until it got bigger than it had been before. In August of 2003, I had the fugly bugger biopsied, this time, with a punch, not some razor blade.

It came back malignant melanoma, of aproximately 0.5mm in thickness (it must be noted here that I had only had a partial punch biopsy of some miniscule little black speck at the very edge of this sucker). The rest of it still sat squarely on my left lower leg/shin area...seemingly taunting me, causing me to question the true depth. I was immediately scheduled for a wide excision, standard of care when a melanoma is actually only 0.5mm in thickness. But I had an issue: I wanted to know how thick the rest of it was. A doc at this practice, who had not been there before (when I went there back in 2001), was the one to do the biopsy. He was very concerned about this mole being there before and "regrowing" in the shave biopsy scar...This led to a whole mess where he dug up the old slide, reviewed it, and later on, made a very shaky statement referring to "legal reasons" being the reason he couldn't comment on the old slide, and my ultimate consultation with a malpractice attorney.

By this time, the docs at the head of the practice had already goaded me in my very limited wisdom at that time to go ahead with the wide local excision (removal) of the melanoma. When it came back, the residual melanoma in the WLE was just over three times as thick as the initial biopsy showed.
I needed a sentinel node biopsy, since that is the standard of care for melanoma that is over 1 millimeter in thickness.
At that point, demanded copies of all my records and took my whole case up to Jefferson in Philadelphia, where some of the most skilled experts in melanoma practice. I can say nothing but good about all the care I received there from every doc through every single thing that transpired in my case since then.

In November of 2003, I had my Sentinel Node Biopsy done: a test to check the lymph nodes nearest the melanoma to see which ones that primary had drained to, and check them for any melanoma cells.
I had 5 lymph nodes "light" up. One was questionable, with atypical nevus cells in the capsular area of the node. It was ruled that this node was most likely not melanoma due to the location of the cells, but to quote one of my docs, "The docs are still scratching their heads over this one."

So I was closely monitored by the oncologist along with the surgeon who had done the SNB. Something that would ordinarily be considered unusual for a stage IB melanoma patient.

All went relatively according to plan as far as stage Ib melanoma patients go...That is, until December 2004, when I felt a sharp stabbing, stinging sensation right next to my wide excision scar. I looked at the scar to see the origin of this sensation, and noticed a little red dot. Over the next couple of months I watched what started out being a little red dot turn into a raised pink papule/nodule. In March of 2005, I finally got in to see a dermatogist at University of Penn who biopsied that spot along with two others.

The spot was recurrent melanoma, consistent with an in-transit/satellite metastasis. The report stated that cells were seen focally within a lymphatic channel.

I was now stage IIIB. Things were a blur after that for a few months.

On May 4th 2005, I had a superficial inguinal node dissection done to remove and check my lymph nodes in my left thigh/groin to check for any melanoma cells along with a skin graft to cover up the crater-like hole that had to be created to remove this recurrence.
12 lymph nodes were removed at that time, all of them FREE of melanoma!! Yee-haw!!

After close consideration and inspection of my slides at that time for the in-transit met, back in June of 2005, it was the recommendation of my oncologist at Jefferson to get the Isolated LImb Perfusion done. I ran like a psycho ninny wimp chicken like my hair was on fire from that procedure at that time...something that to this day I am kicking myself in the butt for...I do realize it does no one any favors to beat yourself up about making decisions that ultimately lead to a worse outcome, least of all yourself...but hey...

I went runnin' to UPenn for a second opinion, where instead of ILP, I was offered up the treatment regimen of Temodar and GM-CSF. I took these on a 28 day cycle: 5 days of TEmodar, two days off, then 14 days of subcutaneous injections of the GM-CSF, then one week off...Start over. I was on Temodar for 10 months; GM-CSF for 12. This was all started up in August of 2005.

In March of 2006, I had a crop of little pink papules literally pop up overnight up and down my left upper/inner thigh, along with one that was deeper in the skin and felt like a little rock or pebble without a pink bump on the surface. These suckers literally just disappeared within a few days of completing the TEmodar part of one of my cycles...I will always wonder if they were actually melanoma. A biopsy of the deeper lump was inconclusive for anything but white blood cells and some fibrotic type tissue (?).

In late July 2006 I felt a hard rocklike and immovable lump just an inch below my lymph node dissection scar. It felt identical to the deeper lump I had felt in March. A Ct scan confirmed a subcutaneous nodular density and a fine needle biopsy confirmed melanoma.
I had myself another in-transit/sub-Q. Surgery to remove this little abomination was done on September 22, 2006. In the outlying skin that was removed, it was evident that the big boy had spawned off some clones and babies of different sizes.

I no longer had any argument good enough to justify not doing the isolated limb perfusion, since this shit just loved to keep on croppin' up in my leg. I was done farting around and finally, head out of my butt, at long last, had the isolated limb perfusion along with a complete dissection of all the rest of my lymph nodes in the pelvis/lower abdomen. For the most part, I have railed, griped, and gone into more detail about all of that whole ordeal here on this blog...It was basically what got me started doing the blog thing...That, plus it just seemed like a real cool way to get my thoughts out of my head where they seemed to be doing me no good, and to be truthful, were poisoning my attitude. LOL.
Of course, as I mentioned in the beginning, I had 31 lymph nodes removed, one of them in the lower abdomen was positive for multiple foci of melanoma. This blasted old node put me up to stage IIIC.

And the rest, as they say, is history. Until now, that is. All this seemingly overwhelming at times stage IV crap. Two mets in my bones and six in my lungs. HOLY HELL.

Being down by damned near 50 lymph nodes, I have noticed that I am swelling quite a bit, as you can see from the pics below. Not all the time, but more often than ever before. These pics aren't quite as bad as it has been on a couple more occasions, but even on the worst ones, it hasn't been as bad as the heinous lymphedema issues some of my friends have had to deal with...But check out that fabulous left ankle and upper foot area. Pretty, huh? That shit can get pretty painful...so I can't imagine how painful it must be for people who have more swelling than I have had...My heart goes out to them.


Here is another shot of this beaut.
Interluekin 2 is the next line of attack for me...at least once I finish up these radiation treatments. I am now 9 treatments down; either one more or five more to go, depending on whether or not the radiation oncologist thinks I have responded as well as he hoped I would.
I am investigating the IL-2 in two different places. One of which is St. Luke's Hospital in Bethlehem, Pennsylvania, which is over 2 hours from my home. The down side to this one is that my family would most likely not be able to be a physical presence there for moral support for me at any time during my treatment. Of course, there is no denying the excellent reputation associated with this hospital. That can't be argued with...Tough choice, to say the least.
The other choice is the hospital close to my home. They have just built within the last five years, a new and high tech cancer center. They are trying to build up an excellent reputation in the area of other cancers, but are branching out more into the melanoma field. They have been certified as one of the few selected hospitals to give high dose IL-2 to stage IV metastatic melanoma patients. The onc I consulted with there who will be administering the IL-2 said they all, he and all of the nurses, have been rigorously trained to give this treatment by the IL-2 staff at Pittsburg.
They haven't had the sheer volume of patients yet that St. Luke's has had, and therefore, less hands on experience...but it is still so worth considering...And of course, my family and friends would all be able to come up and hang out so much more easily...That alone would be a HUGE thing for me...
However, with my local hospital, they are still trying to work out all the potential insurance issues. To say that by the day, I am getting more and more fried in the skull would be putting it far to mildly. My tension meter is off the charts and in the red.
But....I am toughin' it out as much as I can...and am hellbent on getting this treatment, as it seems to be the most promising as far as complete responses and durable long lasting remissions for those patients who have the complete response to the treatment. 16% of patients responded in trials: 10% partial response with at least 50% shrinkage of tumors, and 6% complete response...ALL tumors GONE...and apparently, most of them are still NED. Downside...the treatment is supposed to be hell on earth for a few days while receiving it and the first few days home...

But who can argue with a shot at NED? Especially at Stage IV...and NED with a lasting response? Shit...at this point, I am ready to grab that bull by the horns...

But...One thing stands true, still, above all else, despite the battle between the positive upbeat and go get 'em attitude versus negative and defeatist one:
To use I pic I posted before, all repetition aside, I believe it sums it up:


Ain't that the truth?
Until next time....

2 Hours and approximately 53 Minutes...

That is exactly how long in actual and realistic time as we know it that I spent today in a state of raw, white hot panic....
Just shy of 3 hours, but it felt more like 3 months...or better yet, 3 years...
Time has this strange way of distorting itself during times of crisis to the point where it is completely out of step with reality.
But as usual, I am getting ahead of myself...Well, to those of you who have happened to pop on to MPIP already, you may quite possibly have happened upon my post where I just may have jumped the gun a little too soon....
I have been having this pain in my right knee. That is, in addition to the pain in my ass (literally) or more specifically, very low left back and my right hip and upper thigh. My knee felt as though someone drilled a hole in it, shoved a time activated bomb of some variety and set it to explode at precisely 6:00 a.m. Eastern Daylight Savings Time on Monday morning....and it hasn't stopped hurting since. Or quite possibly whaled away on it with a sledgehammer until the bone was completely pulped would be a not too far off description *a little melodrama for you, folks*.
Well, it didn't just start hurting out of the blue, to be honest. It was aching a bit for a few days now, but I figured that I was most likely putting a lot of extra strain on that joint since my hip has been so out of whack lately.
On Monday morning though, as I staggered out of bed in my usual half dead state upon waking, moaning "paaaaiiin meeeedddds...neeed paaiin..meeeds...nooooowwwww" in a slow zombie intonation, stars and fireworks exploded within my skull and on my inner eyelids with each step I took that put weight on that right knee...
That woke my ass up right quick.
I hit the deck.
Zombified moans became wails.
To say this is a major bummer would be grossly understating things, but it was, since I was honestly starting to feel a bit better in the pain department, at least in my lower back.

My husband went to our local Rite Aid on Monday afternoon, and perused the vast selection of walking aids and devices. He didn't ask me first, knowing my stubborn ass would blatantly refuse his offer to go pick out a cane for me...He just did it. I have been forever thankful since, 'cause DAMN, did I need it!

Anyway, by Tuesday, upon seeing the cane, which I must admit, I had to customize with butterfly stickers *did I ever mention before how corny I can be? Hell, I had to personalize it and make it fun somehow!*...but upon seeing the cane, my lurching walk, and my scrunched up face, along with my grunts, my radiation techs ordered me to tell the radiation onc right away about my knee pain. I wasn't doing myself any favors by trying to suck it up and be tough...just being a stubborn ass, as I have known to be....quite frequently, as a matter of fact.

When the doc popped in to see me and ask what was up, I told him my knee hurt like a MOFO. *not exactly what I said, but so what*...He ordered an X-ray with a STAT wet reading to be sent immediately to him. He told me that even if the X-ray showed nothing, he may want to order an MRI just to check the marrow out and make sure it was okay.

Sooo, today I go in for my usual rad treatment, and the nurse to my rad oncologist comes in after I have gowned up to tell me that the X-ray found something...A Lytic lesion *then all I heard was something resembling the voice of the teacher in those old Peanuts cartoons*.."mwah, mwaah mwaaaaah, mwah."

I somehow managed to garble some most likely borderline indecipherable gibberish that she somehow must have understood to be a question: "So, is this another bone met?"

YES.

She was already telling me that they were gearing up to start another CT simulation and tattoo session for this new spot, along with setting up radiation treatments for my knee now.

That HOLYSHITHOLYSHITHOLYSHITFUCKER ticker tape thingy started to run constantly through my brain. A roar that drowned out all other thought and reason. How could this be? Nothing, I mean NOTHING had shown up in my right knee on that PET/CT fusion test that I just had done on March 16th. That means this stinker showed up in less than a month. That was when I came unglued even further.

Sooo, immediately after the radiation treatment was done, I was sent to the radiology department for a CT scan (without contrast since it was on such short notice) to get a clearer picture of this thing.

Don't ask me how I managed to drive myself home. Somehow, I did.

I got this news around 12:00 this afternoon. By 2:53, the nurse already had the CT results. Approximately 2 hours and 53 minutes, such a short timeframe by most standards, dragged by like a virtual eternity to me today...All hell broke loose in my brain. The tears I had cried up until today were only a slow leak compared to what I let rip today. The damn broke. For just short of three hours today, I was sure I was screwed...especially since the thing seemed to grow at record pace. My brain was such a fried, practically obliterated and totally whacked mess, I don't even remember much of anything coherent that crossed my mind now...Just that utter and complete panic.

But her call to say the CT was clear...That was the happiest I have been in a long LONG time. To say I felt like I hit the lottery would not be an exaggeration...I mean it...I truly did feel that way. I have been skipping around ever since.

Weeeell, okay, maybe not literally, since I got a semi bummed and weakened left leg and a hurtin' like a bitch most of the time right one, skipping is a physical impossibility for me right about now...but at least I was skipping in my brain.

Let me just say that I felt at the very least like a complete boneheaded idiota and moron for spazzing out times 100 and posting on the MPIP before I had the CT result to back up the X-ray...But deluded or not, I was under the total impression that an X-ray is one of the last tests that will turn up a tumor since it is the least sensitive...So if the X-ray found it, then I was convinced I was f**ked.

The nurse did tell me that my radiation onc will go over with me in more detail tomorrow what exactly the CT did show, and why it was possibe the x-ray was showing something, when in fact, the CT did not...But as far as I'm concerned, whatever it is, I don't rightly care too much...AT LEAST IT ISN'T MELANOMA!!

Sweet relief.

And a quick, hard and fast blow to my head to get me out of that totally negative mood I had been in the last couple of days. Nothing like being shown, blaring and blasting smack in my face, that things could always be worse to get my head screwed back on straight and think more positive.

A shitty way to be taught that lesson, to be scared shitless and totally out of your wits, but effective...very.

Some babbling on Easter

Just hangin' around...trying to stay sane.
This post will probably and most likely be all over the place...a little, no more like a LOT like my brain lately.
Saw one of those more than annoying mass emails that have been fowarded to like 10,067,845 people, sent to me by my sister where I had to scroll down through all sorts of html code and previous email addys to get to the actual joke, but when I did, one of the parts of it actually tickled my ass as somewhat funny:
The joke was in list format and listed things that people always wonder about. It was the last one. "The statistics on sanity are that one out of every four persons are suffering from some sort of mental illness. Think of three of your closest friends, if they are okay, then it's you."
Mine are all okay. Mwaahhahahah.

Anyway. Nuff of that crap for now.

I actually got to thinking on this Easter morning, about all the good and sometimes amazing ways cancer has affected my life. All the nasty and negative as HELL crap is a no brainer, I just feel compelled to bitch, gripe and complain about it here so it doesn't continue to contaminate my brain and cause it to self destruct more than it already has ;)

The good stuff needs to be mentioned more, and I realized that, so here goes:

I have been overwhelmed by all the love and support I have received from friends and family alike...it never stops melting my heart, and I am not just saying that because it is expected of me. It really does...and it really floors me, and brings me to tears of pure joy...I never dreamed that little ol' me could mean so much to so many people. I still have to slap myself around a little bit to get my head outta my ass, cease all of my self deprecating BS and WAKE UP! Anyone, well...maybe most people, who know my history, know how insecure as hell I really am...Anyway...I have been overwhelmed with the best kind of happiness...

Happiness that I have never known, short of meeting and marrying my husband and having my two beautiful babies. It really means that much to me. All of YOU are my angels, and give me more strength to face whatever comes next than I could ever muster up all by my lonesome.

That just needed to be mentioned :)

As far as the radiation treatments are going, so far, so good.

I actually doze off for the few minutes that I am on that table, whacked as that may sound. And so far, I have had little to no side effects from it, 5 treatments down...anywhere from 5-9 more to go, depending on how I respond pain wise and otherwise.

Pain wise...ummm, it's getting there. At the very least, I got some great advice, and will definitely take it! So far, the radiation seems to be knocking down the pain in my sacrum/low spine...but I am still hitting the meds the same for the hip pain. Man O MAN, that one is a bruiser!! so it may take a bit...

I will probably post an update on all that is going on with new developments as far as the IL-2 prospects go sometime soon.

Complete change of subject here, but I have been writing and tweaking an article I want and plan to submit to a local magazine. It is aimed at getting awareness out about melanoma and what a NASTY BEAST it truly is...Got some facts in, along with a jab at tanning beds, and of course, I gave a little bit of my own story. I have to admit, I am a little bit intimidated, since the target readers of this mag are in the twentysomething (like under 27) age range. But the thing is, these are the people, aside from teens, who need to hear this message the most. Just a little intimidated...but that won't stop me. Anydamnway, I have written and re-written it like 3 times, and finally think I came up with something halfway decent...Then again, I am a bit off center lately ;)

I may post it here....not sure yet.

I know the pic below doesn't really 'fit' with the Easter thing, I just thought it was funny. Wish I could find a way to include that pic with the article I want to email to that magazine!

Yesterday, my husband and I actually got ourselves a couple of Easter presents:
A fire bowl for our back yard, which, in our honest opinions is AWESOME, because we can have little fires right in our own back yard; have a little of the fun of camping right here at home, cause we may only be able to squeeze a couple of trips in this summer. Of course, it goes without saying, that I plan on sqeezing in as much FUN as is humanly possible in whatever time I have left (which HOPEFULLY is a LONG, LOOONG time)...but for times when it just isn't possible, we got our fire bowl as another possibility. That, my hubbie, who I always have fun with, some variety of alcohol containing concoction (once I am OFF pain meds, of course) and possibly a big ol' doobie (or not), could have definite possibilities.
Plus, we got us some NEW cell phones. The ones we have before were dinosaurs, relatively speaking as far as techological crap goes. They were over 3 years old, come ON NOW. LOL. WE even got those bluetooth headsets. Man, I am just beside myself. lol.

Anyway, that is all that has been going on with me these last couple of days. More later on the IL-2. Just don't want to get all negative right now...and that treatment, to be totally honest, scares the SHIT outta me.

But not today.

Warning: Rant Fest, wig out negative type post...read at your own risk.

These last couple of days I must confess, that I have been about the furthest thing from a ray of sunshine beaming with optimism, wit, courage and strength. It would probably not be too far a stretch to believe that there really is a little black thundercloud complete with those little rhythmic zapping lightning strikes ala The Weather Channel graphics centered and hovering about 2 inches squarely above my head following me around.
Maybe I am long overdue for another meltdown of epidemic proportions...a wailing, whining, blubbering hissy fit that would be more fitting of a toddler than for a 35 year old woman...But at times, that is about what I feel like doing...Waaaah, waaaah, WAAAAAHHHH!

Then again, maybe it is PMS.

I don't know...All I know is that I have run the complete gamut and spectrum of emotions, good and bad within the last few days. Flipping out and going ballistic over the cable modem deciding to go on the fritz (Pass the Xanax), bawling like a 3 year old over my old 13 year old cat belching out a 3 foot line of regurgitated mess on my carpet for the 4th time in one day, skipping like a loon around the house and twirling around like I did when I was 5 over the fact that the pain meds actually knocked down the pain to a respectable, bearable and dare I say it, almost normal level?

Who knows...Maybe there is the very real possibility that I am a rapid cycling bipolar patient and have just been going undiagnosed all these years.

Actually, even just bringing up the pain medications, despite the fact that they are now helping tremendously, stirs up a whole host of negative emotions for me these last couple of days. A sore subject now, to say the least. Like having a molten hot poker jabbed into and twisting around into a not quite healed wound.
Here is an example of my not completely rational behavior and reaction to something that I am just hoping can be chalked up to a misunderstanding...To my overwhelming tendency to read too much into things...To my even stronger tendency of late to be slightly paranoid...

I was having one of those days yesterday...You know the kind where if there is something that is going to crawl up under your skin, drive you completely batshit and fry the very last nerve you have left, it can and does occur...at times, without mercy. I was already minorly annoyed over the prospect of 20 degree below average temps and snow showers over Easter for Christsakes. I mean, come ON! *see post far below about my sheer detestability factor to wintery like weather*
I won't bore those of you who actually read here, and brave this blubbering and at times meandering babble that I am prone to at times by stating all the other typical yet irritating shit that plucked on my one last nerve and snapped it throughout the course of the day yesterday...

But.
Then I happened upon a post on MPIP. I don't remember who the poster was now, but in given my *hopefully* paranoid and semi-delusional behavior patterns as of late, I am hoping I was just misunderstanding things and I was NOT in fact being dealt out a JAB/insult about my drug seeking junkie type behavior (*MAJOR tongue in cheek statement here) RE: My pain doc post and his ultimate response about my having to beware of docs thinking I am one to "chew" through narcotics without regard to instruction and potentially be labeled a problem patient.
NOTE: I am in no way intending any offense to the pain doc, as I highly respect his sage advice and willingness to stick around and help out so many MPIP'ers when in need of advice/help with pain management.

But this other poster made a statement about not wanting to be misjudged about being a Pain management problem child.
WTF?
Here I sit...hoping like hell that this post is in no way related to my previous post, praying that 90% of the MPIP population does not in fact believe me to be some sort of junkie who is exhibiting the first signs of drug seeking behaviors.

Let me just clear something up for all those doubters who may be among the ranks of people who may have quite possibly questioned this offensive assumption based on less than half of the actual story.

Just for the record, wierd and whacked though it may seem, my radiation oncologist gave me the lowest dose of those meds...and actually instructed me that I would most likely have to take them "more often" and to "let me [him] know how many I actually had to take so he could use it as a guide to give me something stronger." Believe it or not...Believe what you will...Shit...even my husband did a double take when he heard the doc say that....

I have given birth to two children, one of whom took 29 looooong hours to bring into this world, had 5 surgeries, some minor, some MAJOR>...and I mean MAJOR (Isolated Limb Perfusion/deep lymph node dissection)...and in every case, I could not STAND to stay on that medication any longer than absolutely necessary...I would always taper down the dose ASAP and each and every time, I would have leftover medication. Just for the record, I would rather be experiencing a liveable amount of pain and still feel totally straight in my frame of mind, totally with it, and able to perform all my normal day to day activities as soon as I could. The last thing I could ever stand was to feel like I was in that semi-catatonic narcotic induced haze and stupor as a trade off for complete pain relief.

But hell...I know I am blowing this WAY over the top, out of proportion. I don't even know why I feel compelled to justify myself...feeling as though I have been put on the defensive by something I hopefully completely misunderstood.

I know...I have probably gone completely off my rocker, lost the majority of my marbles, gone off the deep end....Whatever the case may be...

My head ain't screwed on quite right lately.

I just can't deal with this constant need, demand and pressure put on us as cancer patients to suck it up, be tough...smile ear to ear while melanoma could be eathing my insides out (I know...horrible visual, but I have envisioned it...and worse...) Be that towering and bionic pinnacle of admiration, inspiration and strength through the pain, the extreme fear...at times, crippling fear of that which we never want to think about.

It's bullshit.

I know. We all know. Yet we are compelled to show the world only the most desirable traits of ourselves...and never, under any circumstances, even if you are bleeding out the eyeballs, be negative or weak. But I choose to live in reality.

Here is my ultimate fear. It goes without saying. Literally. That elephant in the room. That nagging voice, a whisper on the wind...the one that threatens to drive you mad...That too bright neon sign that sears an imprint within the cortex of your brain...

It is one word. One concept. A given in life. Yet something not a one of us wants to face up close and on a personal level.

Death.

Hell, even I shut that crap down quick with comparable lightning fast speed to which it popped into my overly addled mind to begin with.

And as for the "happy meds" as I call 'em? More specifically, the Xanax; Shit...I'll be the first to admit it. I needed 'em. Probably a whole shitload of time longer ago than my stubborn ass would have allowed me to break down, cave in, and concede to accepting the script from the doc.

Good Lord above, I don't even want to contemplate the completely negative impression people would have of me if I honestly admitted to seriously considering dabbling in the realm and possibilities that could be brought on with a cannabis induced haze.

God Forbid.

To those of my dear and closest friends or family who have actually managed to torture themselves by making it this far down into this, my exhibition of my seemingly demonically possessed and totally shrewlike behavior in this post...I apologize profusely and with my whole heart...

Call it a momentary...okay, maybe not so momentary, lapse of reason, and another gap within my normal state of sanity.

If, that is, you could ever call me sane in the first place ;)

2 Down.

Well, I have now finished my second set of radiation treatments to my sacrum/pelvis and my right hip. Above is a pic of me on the table getting ready and gearing up to have my melanoma fried, sizzled, seared and cooked into a well-done oblivion and hopefully out of my bones for GOOD.
The radiation machine can actually be quite intimidating once you are lying on that table. It is very large when you are standing right next to it, or lying right under it...can get pretty overwhelming...
It can turn sideways so that it wraps around the table in sort of a C shape; it can rotate from side to side and even underneath the table so that the positioning coordinates with what was programmed into the system from the basic scans they took during the initial visits to determine the precise areas that need to be irradiated. Custom number coordinates for the table position are made based on the info obtained from the CT scan simulator, and the "tattoos" that are marked on you to make sure that you are positioned the exact same way each and every time you lie down on that table.
I am totally sure I am way oversimplifying this very complicated process, but at the very least, I am in complete awe over how detailed it all is...

Hell. It better be. I would hate to find out that one of my kidneys was fried to a crisp instead of one of the tumors.

Of course, as I stated before a hundred times to quite a few people, my main concern is obviously, that this whole complicated process of lining everything up, coordinating the position of the beam to the spots verified on the scan, etc. etc, and on and on...that it sizzles and zaps the living SHIT outta that mel that has taken up residence in my bones.

Overall, the staff has been incredibly friendly and kind. The atmosphere and general feel of the place is all tooled to create a sense of peace and inner calm complete with beautiful pictures and photographs on the ceiling for you to gaze upon in the vain hope that it will soothe you and distract you from what is, in fact, actually going on:

A war being waged between you, and ironically enough, mutant cells created by and trying to take over your own body. A war that not a one of us signs up for, but needless to say no one will never raise the white flag in surrender.

So far, I have had minimal side effects, but obviously, I can't jump to too many conclusions just yet, as I have only completed two out of anywhere from 10 to 14 treatments depending on how my melanoma metastases respond. I was told, however, that I could possibly experience some minor fatigue (like the major stress I have been feeling isn't already doing that) *eyes rolling*, possibly a slight chance of nausea since the pelvis area could possibly include a small part of the bowels, and also a slight chance of that not so fabulous malady of having to bolt to the little girls' room ASAP. As far as that last one goes, I figure it will all balance out, since narcotics are notorious for creating the exact opposite of that effect. Shit, stay on any narcotic long enough and you need a blasting cap or something equally as offensive to take care of that particular problem.

But, most importantly, and seemingly unanimously among all the docs and nurses, is that there is a very good possibility that these treatments will help tremendously with pain relief. To that, I am belting out a ginormous HALLELUJAH, LORD ALLMIGHTY, THANK GOD AND THE ANGELS ABOVE.

Oh, and of course, just in case I didn't stress this point enough, it can possibly and hopefully sizzle that melanoma up. Always an incredible possibility and needles to say, prayed for intensely.

As far as my pain control situation, things are looking up a bit.

The doc prescribed me some extended release Oxycontin...YEEHAW! along with some Oxycodone pills that don't contain Acetaminophen for episodes of breakthrough pain. As of last night, as they told me to expect, my blood levels of the Oxycontin were not high enough that I wouldn't need to hit the Oxocodones every few hours; I was told it would take a couple of doses to get it there...and if not, they will be tweaking it up some more....

But, I am happy to report, that while I slept like crap last night, staggered out of bed in a bleary eyed state of complete mental retardation and cognitive impairment from such a lack of good sleep lately, the shit kicked in at around 9:00am this morning or so. I was so ecstatic and on a natural high--*honest and swear to God I was not loopy from meds*--just simply due to the fact that I felt something close to normal...There was only the slightest achiness and I could actually walk like a young woman again...Not all hunched over and waddling like a bowlegged psycho from the lack of being able to put weight on my right leg.

I am PSYCHED to say the least. And I am sure to anyone I interacted with today, there was a MAJOR difference in my general mood and outlook that could no doubt be heard in my voice...I was just happy.

Hoping no one thought I had taken a nasty fall, whacked my head forcefully on a very hard surface and suffered irreparable brain damage, due to my happiness level being in direct contrast with the unfortunate circumstances lately....I can just imagine it would seem far out there and more than weird, that despite all this more than shitty news I have been blasted with as of late, that I was in such a euphoric mood today...A true testament to how miserable pain can make you; but on the flipside, without the pain, you never truly and fully appreciate how wonderful and completely incredible it is to feel good.

Okay...Now I am sure I sound like a total and complete whackjob.

But so much now, my thoughts get filtered through the "cancer filter" as I call it. There are several spin offs of this "cancer filter" also, but all of them arise as a direct result of it. Strange how that happens. It has become such an integral part of my thinking, for good (yes, believe it or not, there can be good) and for bad.

Good would be how much it opens your eyes; wakes you up to everything; makes you feel alive. Keep in mind that this is NOT my overall and most common frame of mind lately. I have had to work at this one SOOO much this last month or so...Hell, the last six months or so, who the hell am I kidding? Most of the time I feel like a blubbering idiot who would forget her head if it wasn't attached lately, my mind almost completely blasted out and obliterated...and the sadness...it looms like a vortex, a pit below you, trying with all its power to suck you in...It is a fight to keep yourself from being drawn in there...

But so far, I have to admit, I should give myself a big pat on the back..'cause for the most part, I am managing to pull myself up and keep focused only on what is right in front of me. All that matters right now. Everything matters, and I know I don't want to waste any more time than I have to wallowing in fear, utter panic, depression and self pity.

It is all peaks and valleys.

And I do respect totally the need to purge the negative crap and toxic feelings out before they fester and rot like a splinter that could not be dug out...A very BIG splinter. So I let myself cry...I let the damn break and let it go....

And even if it is only short lived, the relief that follows in the wake of a good cleansing and body wracked by sobs type of cry fest, is so worth it. It paves the way to get down to business and face head on whatever comes next.

Aww hell, I am probably not making a whole lot of sense right about now, considering the fact that I am currently in the middle of a Xanax induced zone out, completely sleep deprived and stressed out to the max.

Just trying my damnedest, no matter how futile an attempt it can seem at times, to wrap my mind around this, adjust to it (if that is possible), find a new perspective on it all, strike some semblance of balance in my mind, and find some level ground to stand on....ground that doesn't feel like it is constantly shaking with the aftershocks that are still registering on the Richter scale after the big quake already hit.

Eleven.

Wow....What a gift I have been given in watching this beautiful and amazing little girl grow, change and evolve...beginning to show little glimpses of the young woman she will soon become....
My beautiful Alannah, I cannot believe it for one second that you have just turned 11 years old a couple of days ago....Wow...How time flies.
My sweet Alannah took me 29 long hours to bring into this world. That moment of sheer joy and pure magic when time seemed to stand still and she finally burst her way into this world with that final push...all fire, blood, intensity and pure unadulterated euphoria on my part, she was the single most gorgeous thing I had ever laid my eyes upon; whatever ice had frozen my heart before that moment at 1:07am early that mornng, melted away when my eyes came to rest upon her. She wrapped her tiny fingers around my thumb from my thumbnail to my knuckle and I was flooded by a love so powerful it swept me under, took hold of me and wouldn't let go....it hasn't stopped yet, and I know, it never will.
In my young 24 years of life at that time, I had known nothing so incredible, so humbling, pure, passionate and powerful in my whole life.

She is fire, passion, drama, brains, beauty and tempestuousity tempered by innocent sweetness and silliness...gifted with a heart of gold and empathy for people and animals alike.

There is no better gift in this life than that of our children.

In whatever other way I could have possibly mucked up my own personal life, the fact that I played a huge part in creating this amazing person overshadows so much any other way I could have possibly fallen terribly short in my life....I need only look into the eyes of a little girl who looks remarkably like myself at 11 and a sweet little man who will most likely grow up to be a carbon copy of his daddy....

Today....as much as it breaks my heart...my kids found out that I am now stage IV. My daughter burst into heartwrenching sobs and crying at hearing that I now have melanoma in my lungs and bones...

Somehow it was too difficult to be kept from them any longer...

My cries at night with bone pain for the last week or so...

The talks with our family yesterday about starting chemo and radiation soon...

Despite our best efforts to be discreet, our children are always so much wiser than we give them credit for....Somehow, they always seem to have this uncanny ability to really suspect that something is going on; something is not quite right...

They could put the FBI to shame.

It just breaks my heart into a million pieces that they have to go through any of this at all. To see one tear...for every one tear that I see make its way down one of their soft cheeks, my gut wrenches up; I can't bear to cause them even one fraction of an ounce of pain...

Alannah's tears came in a torrent then stopped for a brief second for her to ask me one question: "Are you scared?"--see what I mean? My sweetie was worried about how I felt....

So I took Alannah's face in my hands, since she was the one face to face with me at that very moment, and I told her...(*abridged version) "We will both, both you and me, be very brave sweetie...I love you...I will fight like hell...My doctors will fight like hell for me...I am never giving up, and I am NOT going anywhere...Not if I have anything to say about it!!"

All I can say is melanoma better get its scraggly ol' MOFO ass outta here, because I plan on being here for every single, blessed moment...milestone, birthday, Christmas...

This is my solemn prayer.

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.