Sunday, July 13, 2008
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.
Thursday, August 09, 2007
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,
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.
Sunday, June 24, 2007
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.
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.
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!
Monday, June 11, 2007
Friday, June 01, 2007
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.
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....
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."
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.
Tuesday, May 29, 2007
Thursday, May 17, 2007
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....
Thursday, May 10, 2007
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.
Wednesday, May 09, 2007
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.
Tuesday, May 08, 2007
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.
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...
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.
Wednesday, May 02, 2007
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...
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.
Tuesday, May 01, 2007
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 ;)
Thursday, April 26, 2007
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!!
Wednesday, April 25, 2007
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."
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.
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.
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.
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.....
Sunday, April 22, 2007
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.
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.
Tuesday, April 17, 2007
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....