Wednesday, 31 July 2002 :)
I realised maybe the children are different for a reason. Mayby they’re more receptive.... more sane ‘cause I didn’t sheltered them from the insanity like I did the last time I went through chemo.... Instead of being treated in Florida and sounding ‘UP’ all the time on the phone, (so they wouldn’t worry) this time they’re there.... able to see the struggle.... be a part of the help and healing.... I think there’s a difference..... well, it’s either that or the Marinol....hehe.
Tuesday, 30 July 2002 :)
Mariann stopped over today and stayed for a visit... we talked about all sorts of things... it was nice. Mom came over to visit too. She made us Artichokes and Lobster and other culinary goodies..... ymmmmm
It’s an up and down day.... hoping to get better
Monday, 29 July 2002 :/
First of all I must apologize for not keeping the entries as current in as timely a fashion as I has wanted... I get sidetracked rather easily thankx to the chemo.
Sunday, 28 July 2002 :)
Calling all Angels..... Please hold Timmy Scott and Cathy Nolan in your prayers this week.... they both need some miracles... now.
Today was better than yesterday.... ‘Course I can’t remember yesterday so well... does that count?... Hmmm... started giving myself Neupogin shots today.... I’ll use Joint-Ritis on before bed so I don’t wake up in pain.
Saturday, 27 July 2002 :)
I didn’t update the site on time and now I’m finding id hard to really remember what yesterday we all about.... Ahhhh ‘Chemo-Brain’.... welcome back. I remember I got see Ian’s Mom at some point... she returned from Scotland.... and it was great to see her.
Friday, 26 July 2002 :)
T.G.I.F. My tongue may be shagadellic, but who cares.... small price to pay baby.
Thursday, 25 July 2002 :(
I think I set the land record for food high jumping out of ones mouth.... I have no idea what I won... I just hope it’s not food... heh
Wednesday, 24 July 2002 :)
Ah... hump day soon I’ll be able it walk and move without the constant awareness of my port-a-pack.... Ian is going out to meet people and I just stay home..... like the creature waiting for the master... hmmmm..
The boys are being so great.... so helpful, smiling... either that or I’m overmedicated again.... damnit.
Tuesday, 23 July 2002 :)
This day was a blur.... the chemo is really kicking my ass this time and I go from one nauseous stopper to the next.... there are moments if clarity and during those moments I hold onto the fact that this is only temporary.
Monday, 22 July 2002 :)
Went to the ‘Chemo Bar’ to get the infusion of Cysplatin.... the place was packed... among the crowd was a little lady named Mrs. Smith. She started talking to me and as it turned out it was her birthday... she was eighty six years old today... we talked for an hour, until she was done and five hours later mine was done too and we headed home... just in time for the home care nurse to hook of the 5-FU... yay... I was feeling fine just tired.
Sunday, 21 July 2002 :)
What a wonderful morning... The Poughkeepsie Journal did a feature article on Ian which appeared on the front of the ‘Life’ section and was cool enough... just too short. It was nice to read it over coffee though... I’m always proud of the guy.
The boys decided to stay at Mariann and Robbies, so Ian and I enjoyed a quiet evening... just the two of us. Tomorrow, if all goes well I’ll be getting more chemo.
Calling all Angles.... Please say prayers for our friend Cathy Nolan.... She was just diagnosed with cancer... seems they found tumors in her brain and in her lungs... Your prayers will really help... thank you for sending them.
Saturday, 20 July 2002 :)
Mom Flew off this morning... she was homesick before she left... I know how that feels... yuk... she was better once she got started on her adventure.
Later on Ian and I went to hang with Tom. He introduced us to a friendly architect by the name of Scott. We met him and his wife, Therese, and their two Great Danes.... very cool. We got talking but I started to get tired so we said goodnight and plan to get together again.
Friday, 19 July 2002 :)
I went to see Mom today... She will fly to North Carolina tomorrow (she’s a guest speaker at the Tenth Annual Spiritual Frontiers Fellowship Southeastern Conference held at Guilford College in Greensboro).... kinda cool... Please say a prayer for her ‘cause she was in some pain when I saw her.
So wiped... a friend stopped over unexpectedly with his nephew and I was to tired to be social.... *sigh*.... crazy days.
Thursday, 18 July 2002 :)
I spent some of the day with Michele... that was fun. She ended up taking me to lunch at a nice sushi bar and we had a chance to catch up. After I left her I went to get my blood work done and the good news is my White Blood Cell count is much better. They don’t think I need the Neupogin just yet... Monday I should be fine for chemo.... YAY!... I came home and collapsed... *phew*.
Ian and I celebrated our eight year, three month anniversary by having a quite supper at home.
Our friend Sonya Bertolozzi, a talented make-up artist, was featured in the New Paltz Times today... the article was great and really told a lot about her work... very cool.
Wednesday, 17 July 2002 :)
I had the strangest craving for pan seared tuna today... I have no idea why. I even dreamt about it last night. So today I bought some and made it... came out great... weird huh?
In the morning I’ll get my bloods drawn and see how the numbers look. If they don’t look right we’ll use Neupogin to bring them back. I also plan on getting more work done for the Foundation with Michele... and some other stuff too. The Tylenol PM proved to be too strong... I was groggy at nine in the morning so I’ll try taking half.
Please say a prayer for Shirley... she really needs them right now, she’s going through a rough time medically.
Tuesday, 16 July 2002 :)
I was really tired today and I rested a lot.
Something interesting happened today... Kris called me to tell me there was a segment on NBC about Esophageal Cancer and maybe it could be helpful... HA.... It was all about facts and figures - given by Sloane Kettering Hospital in New York. True to form it was all fact and figure, and none of it encouraging... “It’s estimated that there will be 13,000 cases and that 12,600 would die”... how wonderful - same positive crap they tried to feed me in 1999. I didn’t buy it then and I’m sure not buying it now... heh... (If that’s not a compelling argument NOT to go to Sloane - I don’t know what is!) Christ they need a new schtick... something less ‘gloom and doom’. My brother Phil said something really profound.... “Don’t relate to the light bulb - relate to the light.”.... It’s so true boys and girls... don’t focus on the troubled body - focus on living.... and your attitude is absolutely key!
My Mom came over to stay overnight, but she couldn’t stay ‘cause she was in too much discomfort... Please say prayers for her ‘cause her back and hip is really bothering her.
Monday, 15 July 2002 :\
My white count was too low for chemo.... gotta wait and see if it rebounds on it’s own or if I need some shots. I was really tired today but I visited my brother Phil anyway.
The rest of the day was a smudge... too tired. The boys went to stay over at their Mom’s and Trever went to stay their for a two week vacation... I’m just not clear as to who’s.
Sunday, 14 July 2002 :\
Last night was miserable... I tossed and turned and was up for most of it.... tonight I’ll take a sleep aid. The realization of it all can gang up on me sometimes... surprising really - I’da thought that this would be easier... and it is in some ways.... only harder ‘cause it’s ‘now’. Mostly calm with pockets of panic.... sometimes I’m like one huge raw nerve.
Aunt Alice called to tell us about a special sale on Ensure (half price) at Wallgreens so I went over and bought enough to see me through the whole adventure. Afterward I paid a visit on Aunt Toni-Ann and Kissy in their new home... it’s gonna be adorable when it’s finished. Nauh was there so I got to see him too. We spent some time talking about design ideas... it was fun.
I came home to Trever being a little curmudgeon, (Trever has been behaving so much better until today) and after a very short while decided I needed to get away (sans cell phone) so I drove to Kingston... stayed an hour and came home
Saturday, 13 July 2002 :)
I noticed my hair brush had a bit too much hair in it... yup.... my hair is already starting to shed... it’s really silly, but it’s the part I hate the most.... *drats*.... This may be the last weekend where I look presentable... oh well.
Tara Shannon came up from the city and joined Tom Hoffay, Ian and me to go to the Out-Sight picnic.... it was delightful and fun. Kimberly and Gail really worked hard to make sure that everyone had a nice time. My Mom was there too and gave Tara a short psychic reading. We stayed a couple of hours then came back to the house. After dinner Tara headed back to New York.
Friday, 12 July 2002 :)
Everything is all set for Monday’s adventure... I get to have chemo. At first they wanted to admit me into the hospital for the week, but I promised that I will do everything right so they will take me in on Monday and give me the really hard stuff while under supervision and then send me home and have a health care person meet me at my home to set up the pump. The whole merry-go-round starts up again
Tomorrow Tom will come over and Tara will come up from New York and we can all go to the Out-Sight Magazine picnic.... that should be some good old fashioned fun.
The Poughkeepsie Journal sent over a photographer to shoot Ian... he’s being featured in another article soon... I’ll keep you posted.
Please say prayers for Robin’s Mom... she’s been diagnosed with lung cancer.
Thursday, 11 July 2002 :)
Tara Shannon came up and stayed most of the day with us... Marco is flying in from The Netherlands soon and it’ll be cool to see him. We had a fun time together, she’s such a love... I’m so glad she’s a member of our Foundation’s board. Corey stopped over too and we had a chance to catch-up. Real friends are really prized.... Ian and I are so lucky.
Had a long talk with Our Hero today... we talked and talked and he may just stay here after all... time will tell.... I kinda hope he does, but will be strong if he doesn’t.
Wednesday, 10 July 2002 :)
Trever didn’t find a bike yet.... I think he want’s to get a handle on things. I don’t wanna see him leave either.... just .... I dunno. Ian swears it’ll be a month at most.
Ian and I went to meet the new local oncologist: Glenn Agoliati, M.D. - we were both very impressed with him and with his office! He told me what I perceived as a problem with my mouth was actually and indication that the perfect dosage of F5U was found... he gave me some great tips.
I went off to meet Steve Jacobs, D.O., my primary who is amazing and was the guy who first sent me to get the endoscopy that originally diagnosed the cancer. By the way a ‘D.O.’ does everything an ‘M.D.’ does and more.
The boys went to stay at Mari’s tonight... so Ian and I went off to rent a movie. “What should we rent?” Ian asked... “Something with cancer and chemo and fun stuff like that” I said sarcastically.... then we went in and looked in the comedy section.... Ian saw a comedy named, And God Said HA staring Julia Sweeney, the comic who played ‘Pat’ on Saturday Night Live. Turns out the whole thing is a brilliantly staged and performed monologue about how she bought a home in Hollywood and was just ready to snuggle into it when.... are you ready... her brother is diagnosed with stage four cancer.... she talks about his chemo and radiation treatments... and other fun stuff - the whole enchilada... and then he dies, but not before see has been diagnosed with cancer too..... *sigh*.... It was so well done... we laughed, we cried, but what was the funniest thing is the irony of getting precisely the movie I described... see - I told ya God listens.
Please say a prayer for Ed Phillips... his knees are playing hell with him.
Tuesday, 9 July 2002 :(
I’m getting stronger and stronger... feeling better and better.
Trever was more disrespectful and I decided it was time to throw the gauntlet... I called Mariann and asked her to consider having Trever live with her and Robbie for a while. She talked with Robbie and called me back to say they would. I told Trever who said he couldn’t ‘cause they lived to far away from town - I said he could bike it - he said he didn’t have a bike anymore - I said I’d buy one..... every obstacle he laid in the path I removed... it was really very painful because I knew on some level he was stalling; but I need him to change the attitude... or the address and I need it NOW. Mariann and Robbie came over to the house for a Family Meeting and all the details were discussed.... it will probably happen tomorrow or Thursday. I adore Trever but I just don’t know how to make him see his responsibilities. Very sad but very necessary.
Monday, 8 July 2002 :)
Ian and I were guests of Tom Hoffay and accompanied him to the Paramount Theater to attend a ‘Town-Hall Meeting’ with the guest speaker none other than the senator from New York - Hillary Rodham Clinton. I was very impressed with what she had to say and with her charm. Tom told us there wouldn’t be a chance to have ‘face-time’ but I didn’t care, beside that’s more a ‘Monica-thing’ right?
Aunt Rusty stopped over today. She was on her way to see Mom and Aunt Pam. We caught up on the lawn while she told me for the past three days she’s been having to hold ice on her dogs hemorrhoids... *cough*... that’s true love. Personally, I woulda duck taped an ice cube to his ass... or better still get some KY and a Popsicle from the Good Humor guy.... hmmm.... save the sticks and build him a really cool food dish..... and I bet it would stop him from running after those trucks too... hehe.
Sunday, 7 July 2002 :)
A relatively good day.... John and Philippe and Genaro and Andy picked us up and took us to brunch... relaxing and fun.... then they left to head back to New York.
Trever and Shawn lost the portable phone and instead of being helpful Trever decided to be a real mouthy little bastard.... he was so disrespectful and rude I ended up wishing him upon himself..... sometimes I just don’t get why he’s still living here.... *sigh*..... I really thought he would have grown more and use this time to ‘re-do’ the mistakes of the last time, guess not..... c’mon eighteen!
Saturday, 6 July 2002 :/
Today may have been a hallucination.
It started okay enough... The boys went with my Mom to Aunt Joanns house..... Genaro, Andy and John came by with John’s boyfriend Philippe to introduce him to Ian and me. Philippe is a nice guy and I enjoyed meeting him. After an hour or so they decided to go tubing down the Esopus River and meet up with us for dinner between six and seven.
We made plans to have our other friends Tom Hoffay and Corey Williams over later to join the gang for dinner.
At six we set up for cocktails and little nibbley things with Tom and Corey and awaited the guys. At seven thirty they called and said they’d shower and come over, at eight thirty they hadn’t come and I was getting too over tired anyway so at nine Ian and Tom with Corey left without me to go to dinner. I laid down. As I did There was a knock at the door - the gang. I told them what was happening and they left to join Ian & Co.... I laid down.... as I did the twins came home and there was a group of family and friends in the front yard. I said hello and that’s when Carry’s car just stopped working. A 2000 VW Jetta with 6000 miles on it and the transmission was frozen in neutral. She was from Brooklyn and had brought Aunt Anne up for the day. Carry was not a happy camper..... we tried everything to get the car to move..... Everything except the thing that worked.... nope .... that one we successfully avoided the whole night! Finally by ten thirty she agreed the car needed to be towed to a shop and after much ado one was selected and summoned.
By the time the tow gets here one of Aunt Anne’s friends has already taken me through my home and told me what I needed to know for proper Feng Shui.... Aunt Anne is the only one getting any sleep, she’s passed out in the living room.... Carry hasn’t worked through all the stages yet and was still in denial, Tom is pulling up with Ian with a story of their own, and Mom’s smoking a pack wondering what the hold up was. It was insane.... with crazy vignettes happening and a comedy everywhere you turned...
We finally pulled a grieving Carry off the tow bar and they left. Ian went out with the gang to go clubbing as planned. The boys went out to meet friends and suddenly as violently as the windstorm happened.... there was the sound of crickets and the eerie calm.... hmmmm.... Did I lay down? Whatayou nuts? Not this time - I might STILL be up... heh.
Friday, 5 July 2002 :)
Kris and Mel.... John, Andy and Genaro.... Mom
Today was a day of visits, starting with my Mom coming all the way to see me and share hugs.... now I’m all better.... it’s a ‘Mom-Thing’. Then later on Kris and Mel came to see me from Stamford which was really cool too. Then three of the four guys came up from New York.... I enjoyed their visit too.
Later The guys, John, Andy and Genaro, invited us out for a sushi dinner... and thankfully I was up to it, (those hugs from Mom really paid off). Funny part was when Ian and I were getting ready to walk to the restaurant a year old Doberman came outta no where and started to dance around the group and then, after careful observation, selected Ian as his new best friend, and urinated on his ankle and sneaker.... muahahahahaha.... Ian had to tip home to shower and stuff we said he should sue - take it to The Pee-ple’s Court.... It’s gross, but we couldn’t help but howl.
Thursday, The Fourth of July 2002 :)
Another scorcher... Nancy, a friend who’s an oncology nurse gave me a great lead as far as a local fellow... I’ll look into it as soon as I can talk... right now it hurts to - the kids love that.... heh.
Wednesday, 3 July 2002 :)
Boy was it a hot day today... I still have no idea how people lived without air-conditioning.... I’m ashamed to say I was in a sour mood for some of the day, not acceptable at all. It’s so uncool to take your grumpy stuff out on others.
John Filimon and some other friends are gonna be coming up to share the weekend with us... that’ll be great fun. Tom called and has made the arraignments for Ian and I to accompany him to hear Senator Hillary Rodham-Clinton to speak Monday (sans Thorazine).... hmmm... that’ll be exciting!
Tuesday, 2 July 2002 :)
Okay, my back isn’t 100%... but it sure is better than yesterday.... YAY! I was able to get some leads on other oncologists and tomorrow I should be able to get things started. As for the rest of the day... I had to just chill out!
Aunt Rusty is at Mom’s and she’ll be around for the weekend too.
Monday, 1 July 2002 :\
Brother... today I got up and did something, I dunno what, to my back... but there you have it... I spent the majority of the day with cold and hot packs.
I was supposed to go see the local oncologist, but I couldn’t do it ‘cause of the back pain and promised to do my best to come in tomorrow... I told him all about the mouth stuff and asked him to please call in a script for ‘Magic Mouth-Wash’. Hours later it still had not been called in... and I was in pain. I called the office and was told that he didn’t want to order it without seeing me first. I called Moffitt immediately and had them call it in... First thing in the morning I’ll be shopping for another local oncologist... unreal!