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.