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 ;)