29 February 2000 COUNTDOWN -- Day 2 :)
Woke up feeling much better than the night before….. Thank God. Went to get the radiation and hurried back to the hotel. I felt stronger though… so I made some calls and got some stuff done that needed some attention.
Sent the lawyer all the paperwork and stuff like that so we can attack MVP….. debastards…. They are having a hearing on the eighth to review……”I gottcha review right heeeeeeere”….… hehe
28 February 2000 COUNTDOWN -- Day 3 :x
Sorry to be so short....... but my day is short.... sleep... wake-up, take pills, get back in bed. That’s really sort of a blessing ‘cause I get to dream about being home.... and before I know it it’s another day closer to really seeing those little rascals.
The days that follow that Platinum are really the ‘dog days’.... ‘just gotta hang in there.
27 February 2000 :x
Last night was hell.... but it’s over.
Tomorrow will start the last of the three remaining treatments....Thank God.
26 February 2000 :x
wOwOOzzzZy all day long............ *blech*
Today was a simple waste of pills.... I only woke to swallow them and try and eat... I expected that this weekend may be the rough one ‘cause of the Platinum.... I really don’t care ‘ cause I’m gonna get home soon.
25 February 2000 COUNTDOWN -- Day 4 :)
FOUR TREATMENT DAYS: Woke up and had breakfast with Ian and Ricky .... that was really nice..... had a five minute ride to treatment..... is that cool or what?
Ricky left to go back to Atlanta after we went off to the hospital.
Later.... back at the hotel... Ian had a lot more energy than I did and I sorta zonked out.... can’t be too much fun these days, but their only for the short term.
Very frustrating that I can’t load the site every day ‘cause the DoubleTree has such a lame hook up.... but that’s life.
24 February 2000 COUNTDOWN -- DAY 5 :/
FIVE TREATMENT DAYS: My brother Ricky took me to the hospital today and I slept through the whole procedure - just zonked out..... zzzzzzzzzz.
When we got back to the house I couldn’t nap like I usually do ‘cause we had to finish getting the house ready to leave.... we wanted it to be picture perfect. When we were satisfied that it was we left to make the long drive back toward the hospital...’cause that’s where the DoubleTree is that we are staying at..... right around the corner from the hospital.... that will make things really easy.... Florida drivers are really certifiable!
Mom, Aunt Toni-Ann and Aunt Pam are staying at another hotel ‘cause the suite we have is really too small for a group that size ...... we’d be tripping over each other. Ricky stayed with us... he’s leaving in the morning to head back to Georgia!
23 February 2000 :)
Had a real sleepy day at the hospital.... slept through the whole thing.... I think. The Platinum stuff can really knock you for a loop sometimes.
When I got back to the house I got a welcome burst of energy so Ian and I cooked dinner again.
My brother Phil saved the day.... literally...... he had saved a copy of the web site and had most of the days that were lost due to the nasty cyber-gremlins.... *Hooray*..... He was able to email them to me.....pretty cool....huh?
I got a letter via snail mail today from my friend Scrumb in Canada that was absolutely wonderful...... he even sent a pebble in the envelope...... I collect rocks! There was a surprise note inside from Ira too! :)
Well good reader this will be the last evening in the house.... Tomorrow we are going to a DoubleTree that is next to the Hospital. I don’t know if there will be any interruption with the site updates....*sigh*... we’ll have to wait and see. Hang with me.... OK? :)
22 February 2000 :)
I felt really good today. Took the chemo and felt good enough to drive Ian and I back to the house. We stopped and washed the car and later we even cooked dinner together.
I talked to my boys and they need me home..... I need me home.
Speaking of heading back, Mom was going to fly home Thursday, since we are leaving the house and going to a hotel. But her loser brother ‘Nemo’ couldn’t do her the favor of picking her up from the airport, so she had to change her plans to leave tomorrow instead (he can live in her house and mooch off her, but God forbid he should go out of his way to help her).... ugh.... now I need a bath..... Well it all works out for the best, Ian and I decided to keep her here a ‘till the treatment’s finished, (which should be next Wednesday). As hard as it can be to live with your Mom, (I know that sounds bad, but ..... it just ....is) anyway, when I thought about her leaving I started to cry and couldn’t stop - I just wanted her to stay. So I asked her to and she said of course she would. I’m not sure what came over me, but I couldn’t help myself ..... could be an intuitive thing...... could be an internal need.... could be the prozac.
Almost lost my entire site .... Then Ira charged in on his white cyber-horse and saved the day..... God bless that guy!
DUE TO CYBER-GREMLINS FEBRUARY 21st HAS BEEN ERASED ---- THIS WILL BE FIXED HOPEFULLY SOON.
20 February 2000 :)
I walked around the block with Ian once today.... still not bad.
We also bought some face masks, (which I wore in true... "Luke I am your Father” form....... hehe..... and went antique shopping.... I got some really odd looks, but who cares. [Sidebar if you have to wear these: People are apt to move right out of your way if you just make a real wet sounding gurglie cough]
Aunt Toni-Ann will be coming back today and that's always a good thing. I'm looking forward to Monday 'cause I'll get to start the rest of the treatments and be done of the Platinum stuff.
19 February 2000 :)
Well, I walked around the block with Ian twice today.... not bad.
I slept allot. Phil and Jean came over again and it was good to see he and Mom talking, perhaps this could be the start of building a better relationship for the two of them, that would be a good thing.
Taking some special vitamins that are supposed to be really kick ass stuff. I'm getting excited about going home sooner than later.
18 February 2000 :)
Today is the 18th of the month, (Ian and I celebrate every 18th as our anniversary). He had a most heartwarming card that he woke me up with....hmmmm..... what a fantastic guy!
I got to see my older brother and his wife today, he sat outside (he has a cold) and I sat inside...... that was cool, we got to see each other and talk anyway.
Ricky came all the way from Atlanta, just to stay with me for a while...... I'm having a fine day....... saw two brothers and I ate two little bowls of pasta...... wonder if that means something...hrm.
17 February 2000 :/
Finally got the site to recognize me enough to let me post the updates that I’ve been keeping...... damn machine.
I got all the way to the hospital only to be told that my blood levels are still too low and that they are shooting for Monday....... so here I am at the house ..... waiting for.... I don’t know what. Ian is out at the mall, ‘cause he needs to be.... or go mad. Hey I wonder if the prozack is kicking in yet?
16 February 2000 :)
I was supposed to go to the hospital today but I just said ‘Fuck-it’ and stayed in bed....... slept hours and drank a lot of water and soda. Tried to eat food.... but can’t seem to do that so well, just yet. Best thing is that Dr. Jack Ruckdeschell and I spoke and the operation will defiantly be done in Albany by a Dr. Darroch Moores, and Jack will speak with him personally to arrange it.
My Aunt Toni-Ann and Aunt Pam left today to go see Disney.... so it was just me and Mom and Ian.
Finally got the letter from my lovely insurance company, MVP, to tell me that they are declining to pay for any treatments at the appeals level... now we go to the next level. They try to drive you crazy so that you’ll fail and die, they really are bastards. I wonder if the good Doctors who review and make these decisions, after forgetting to be human, at least remember to snuggle their children once they get home.... and remind them what ‘God damn good people they really are.’
Ya know, the more I think about it the more I feel really bad for those guys, they must think life is free, or somthin’... wait until they have to pay for their lack of kindness. Well, I guess we all came here to learn....... huh?
15 February 2000 :/
My older brother, whom I haven’t seen in years..... all families has their stories that are tragic ...... flew all the way here to see me. That was so caring...... unfortunately He has a cold and my blood levels will not allow the visit...... aint that a bitch?
Today I slept like I was a baby.... the more I think of heading north for the operation the happier I get.
The owners of the house have been so generous but they need to use it on the 25th of February so we’ve made plans to check into a hotel for the remainder of our stay.
14 February 2000 :(
Today was Valentine’s Day.... today I felt like I got hit by a truck (*eyouch*). My blood counts are low enough that they decided to stop my treatments for a couple of days and get them better. I did spend a few hours in the hospital getting sugar water in me ‘cause I was dehydrated. They sent me home, told me to stay away from people (they made it very clear to stay away from any public place and any germs) and eat and drink as much as I could.
I told them about the sores in my mouth and how they hurt. They wrote a prescription for this stuff called ‘Magic Mouthwash’ .... and that is just what it is. Gwate stuff makths yur whole mouth numb.... eyhh.
13 February 2000 :/
Well I’m forcing myself to eat....... I never thought I’d ever have cause to utter that statement... I really am forcing myself to eat..... hrm.... things are tasting way strange, all fishy and metallic... or would that be a submarine.... anyway I’m doing the best that I can. Walked a mile today. Walked.... crawled... let’s not split hairs OK
Tomorrow I get to get the Platinum stuff again for the week... the heavy duty stuff.
Got mouth sores from out of nowhere today.....my aren’t they a real treat....... they don’t really hurt ‘till you try somethin funny... like drinking something. Transforms grape juice into battery acid!
12 February 2000 :(
Today was little rough... I’d see a show where someone was eating McDonalds and I really thought I could do fries..... Ian ran out to get them I tried to eat two and couldn’t. Then I saw a soup commercial and knew I could do that..... Mom made it and nope... couldn’t do it...... it’s been like that all day...... just shit.
Ian was so good, but after a while he needed to go out to the mall...... can’t blame the guy, he is being so terrific and for what?
For what it’s worth I’ve noticed that the days are better than the nights.... on every level. I just have to get through this.
11 February 2000 :(
So sleepy today.... getting wicked chills too.... then mad hot.... geeeze.
I have eight treatment days left....... then a short ‘rest’ then an operation. Ran into nurse Valerie and she told me that the operation I was getting was the ‘Daddy of ‘em all’... (how comforting)... she then proceeded to go the graphic details that gave support to her opening statement. I’m gonna talk to Dr. Rucdeschel about the possibility of getting the operation done at Albany Medical - like he had first suggested.
I tried to call home and couldn’t get through even on the cell phone... damn aggravating..........
10 February 2000 :/
Today was a sleepy day.... and I kept getting chills... then I’d be sooo hot - it was nutty, but I slept through most of it so hey...... :)
My buddy Robbie fell off his truck and either sprained his wrist , or broke it...... they don’t really know... that sucks and I sure hope he feels better soon. I’m prayin’ for ya Robbie.
They told me today at the hospital that I should plan on sticking around for the four weeks of “no treatment” that comes up after the chemo..... seems they need two weeks of ‘no treatment’... (‘cause the stuff is still in your system) before they can do any tests that will let them know where I stand) That really stinks ‘cause I was planning on heading home and just being with my boys. The other thing the Doctors are worried about is me catching a cold or flu from up in New York and delaying the whole plan which they say is timed just so.
Don’t worry fellas where there’s a will there’s a way.
I’ve been getting so much e-mail and prayers, and I want to let you know that I am truly touched and grateful.... thank you with all my heart.
9 February 2000 :/
Woke -up went to the hospital for radiation .... came back.... went to bed.
It is getting really hard to swallow stuff.... even liquids so they gave me special stuff to drink that numbs my throat - then I can drink stuff ok. The Doctor said that this is what they expected and that it should stay like this for about a month or so...... yikes.... talk about hard to swallow!!
Now here’s something important, for those going through any serious illness like this: Smile and be nice...... See.... when you’re going through all this crap, you may have a tendency to be cranky or unsociable ..... OK, I think we can all agree that behavior could be ‘normal’... but you have to be very watchful of that.... remember that this is a ‘cancer-party’ and you are the host! You see, the people that love you and only want what’s best for you can only live with that ‘Diva’ side of your personality for just so long before they begin to gather in small numbers by the laundry room and plot how to poison your Jello.
8 February 2000 :)
I got an amazing gift today...... Ian’s cousin, Ross, who is wonderful and so talented, took my site and transformed it into hard copy.... like in a magazine format that is just..... way cool..... the most amazing thing I’ve seen.... It’s hard to explain - it is absolutely amazing. The hours of work and design alone that he had to have spent.... well... everyone here was just like... blown away - including me. Ross is a wonderful cousin and another angel.
I spoke with a second lawyer today who is interested in taking the case against MVP.
Had another weird dream,.... twice..... all about a beautiful rosewood Chinese door that doubled as a chair, and separated the swimming pool area from the kitchen in a trailer. I remember thinking how very clever it was and studying how it was constructed.
HEY, it’s gotta be the drugs... I take 1 MG of Ativan every six hours and 1 MG of Kytril every twelve hours - this is just for the nausea. When My Aunt Toni-Ann was on Ativan they didn’t tell her not to drive, but she figured it out on her own when she was passed by half a bus.... heh ....that will do it (a bus sliced in half). Today It hurt more to swallow so I didn’t eat as much as I should have... I'm also getting a bit of a fever.... not bad, though.... just one of the party favors of the cancer-game. Tougher It's gets - the tougher I get - .... 'cause my mind is made up!
7 February 2000 :)
I’ve always been told that timing is everything..... it’s true you know. After the treatment today I knew what was coming.... the ride home and the four hour nap.... Ian going stir crazy and me feeling like I was 116 years old. So instead I said fuck-it and I went to the nearest mall and ordered a double expresso and sssSuddenly I was Spiderman again.... I was swinging from one side of the mall to the other.... havin a ball. Found some neat stuff..... had some fun with Ian and just felt like the me I know..... yeah!
When I got back to the house, they were installing the new dishwasher that we bought since the one that was here stopped working - Bernadette will love it - it’s the top of the line and you don’t hear a thing! (and it works....... now we’re talkin’)
Ahhhh ....timing. A letter arrived today from a friend and colleague that I work with and have the greatest respect for in New York..... it was one of the most beautiful and touching letters that I have ever received. It so much more than just picked up my spirits.... it put fuel in my tank.... if-ya-know-what-I-mean. ...thank you Garrett .... really thank you :)
6 February 2000 :)
More Homesick today then I have been yet...each day seems to be getting harder. But I am OK, I’m not nauseous or in pain - just miss playin’ with my boys and my dog. The great comfort, other than my Ian, is my tiger. It’s a little stuffed thing to the untrained eye, but it's been with me since I was eight. His name is Tiger.... he used to have a red tongue,.... he used to have two eyes too , but that was a long time ago. Most of his fur has been loved off, but when I'm going to bed he's waiting for me and he prowls around and protects me, just like he always did.... everybody should have a Tiger.
Ian is really going stir crazy and for the first time I am physically hard pressed to keep up... goddamn medicine.... making me drowsy. I just know that as soon as I am all better from this - He and I are going on a real vacation - anywhere but Florida.
I’ve looked everywhere.. the car, the house, the yard, the pockets of my suitcase, but can’t find my libido. Sure hope I didn’t lose it for good - It’s the only one I had and it’s not insured...... another possible gift the medicine brings.
5 February 2000 :)
Had some wild dreams last night about kitchen floors with alligator trenches built right in and nicely tiled...... filled with fresh clean water. I am in a dress...... hrm.... and holding an umbrella. Could be time to check dosages.
What a great day - Rich came over with his children to visit - nice kids. Soon after they left Aunt Pam and Uncle Bill came over too. We all had supper together and that was really nice.
Sleepy day today too.... just not as bad as yesterday. Ian needs to be doing something just ‘he and I’ or I’m afraid he’ll go insane. He’s such a good pal, but this cabin fever is a bitch.
Just got off the phone with Trever and Shawn Their voices are like music and I am plenty homesick now... I’ll be home soon boys.... soon. Funny thing is .... they have no idea how much I adore them... they may think they know... but I love them more.
4 February 2000 :)
I had the pump removed today and that felt good...... sorta like free again. Ian wants to go out tonight to go see SCREAM 3, but I can’t go out in to crowds so he’ll have to go by himself. [If anyone want’s to know who the killer is in Scream 3 e-mail me and I’ll e-mail you back]
I walked around the block three times today and that was good....... slept the rest of the time really...... dreaming.
My Aunt Pam is gonna visit tomorrow........ can't wait.
Another day closer to my boys.....yeah
3 February 2000 :/
Today was also a bit strange.... just sort of off center. I went to the hospital and met with the psychologist to talk about anger and anger management - and the nutritionist to learn new ways to keep calories up and the food itself down....heh
Ian and I went to the mall and bought a dishwasher, the one here stopped working and the repairman said that it was too old to be repaired so we got a really nice one as a present to Barbara and Bernadette.
Slept a lot........I mean - a lot.
2 February 2000 :x
Today was a bit strange... they are adjusting the nausea medicines. I guess until they get it where they want it..... it’s a bumpy ride. I lost ten pounds since last week and they want me to gain as much back as possible.
I slept a lot today and so far I have not walked around the block.
Sourabh and Jill sent me a wonderful book, ‘The Alchemist’ and when I feel better I’m gonna read it... or try to.
Just writing or even thinking... is a strain.... ya know how you can hold one of those big pretty pink sea shells up to your ear and hear the ocean rolling and breaking in your head......... so pretty....... I can do that too... only without the shell.
1 February 2000 :x
Went to the hospital today and actually vomited in the chemo treatment center ...... *Blech* .... that was a first. They gave me a new pump and so far so good - just feeling really sleepy and queasy.
[Sidebar] It’s important to remember, even when you are sick, that you are a part of a team... Cause even if you feel like getting angry at the world, you would be well advised not to... and to be very careful that you don’t say or do stuff that hurts other’s feelings without good cause. Nobody likes a whiner - no matter what anyone says.... Hello common sense!!!
Ian has decided to stay with me and wait for his Mom to return from Spokane. In a way I am glad ‘cause then he can be here by my side, that’s really selfish but it is how I feel. His Mom didn’t want him to schlep out there. When it’s all done, she will come see him here perhaps.
I slept most of the day away.... *sigh* ..... Today was just a smudge on my calendar. But the nice part is that I still get one day closer to going home, and I can hardly wait.