I started this site on the 14th of December 1999 when I first heard the ‘changing words’, I had cancer.... in the beginning I was devastated... then I learned it’s a WAR and I’d become a soldier. I worked hard and kicked it and in the summer of 2002 the stupid thing came back... So, I kicked it again.... ‘cause like I said... I’m a soldier.... these are my ramblings......
You’re welcome to follow my adventures with the most current entry... below...
Or.. Start from the very beginning (day one) by clicking here: December 1999
There’s also an Archive... Funny thing... It was all happening right then... and if you ask me it totally dragged it’s ass - and now it’s all past history... amazing: The Archives.
FIRST AND FOREMOST:
And to Ira for being so patient in helping me make this site become a real thing and putting up with my complete lack of cybersmarts.
Thursday the 18th of September 2003 :(
(This entry is written by Ian)
Today Gino, my Gino lost his battle.
He was surrounded by his loved ones: his three sons Kristopher, Shawn and Trever; his Mother, my Mother, Aunt Pam, Aunt Toni-Ann, his cousin Kristen "Kissy," Kristopher's fiance Melanie and me. We were all holding him and talking with him. He spoke almost up until the end telling us that he saw his father, our dog Scruffy and his cat Isis from when he was a teenager. Around 9:00 PM our shining light on this earth went out.
Being modest, there were many things that Gino may not have told you about himself. As you may have gathered from reading this site, Gino was truly larger than life. He was gorgeous with dark brown eyes, full black hair, full lips, six foot two, and a killer smile! He was a wonderful artist, a brilliant architect of interior design, a wise financial planner but most of all he loved to hang out, laugh and play. As a Gemini he could be all those things but also a little boy who wanted to hang with his best buddies: Kristopher, Shawn, Trever and Ian.
He was also very humble because in his mind he was not gorgeous and didn't realize how breathtaking he truly was.
He was so very proud of his three sons. All so handsome. All with traits that we loved in Gino so through them we will see him every day.
One thing about Gino and I suppose Italians in general, is that everything that he wanted to say was said. I remember the first time I saw him argue with a family member. I honestly thought they would never speak again being an uptight Brit but five minutes later things were forgotten and fine. A very healthy way of living. In the 2 weeks and 2 days that Gino knew that his days were numbered he made sure that we would all know we said everything we wanted to say. For those of you who didn't have a chance, you can talk to him now because he is right beside all of us. Urging us to be a better person. To do well on the test or the interview or whatever.
The sky is still crying here and so are we. We are selfish. We want him here but for whatever reason that is not the plan but I do know that he is waiting for us on the other side, waiting to start this game called life all over again because we talked about that. We promised each other that we would be together again.
Saturday the 13th of September 2003 :/
Today Ian and I were visited by Diana Milkowski and Carina Davis, two dear friends who had arranged to pay a call on us a while back. Pat came over too and soon the house was a buzz with family and friends and a line was drawn.
Mariann and Robbie stopped by later too to say good-bye… they’re heading out on a cruise in the morning. Linda is heading home tomorrow too… I’ll miss her as well
Friday the 12th of September 2003 :/
Friday was an upsetting day … sort of…. The Dr. in Mexico never called and when we called her we were told she never does…. To just fax your information along with a letter to her and wait…. Hmmm…. Not so good at that.
Later on, around eight o’clock Steve Jacobs, my primary doctor, came over and Mariann, Ian and I had a long talk about the medications and their side effects… and just to make sure everything was in order. Steve was great and he prescribes liquid Morphine to help get me off the patches which itch…. He also gave me a sleeper.
Mom and Linda drove all over trying to fill the scripts, with only partial luck, but how sweet of them to do all that running.
I, meanwhile seem to get nauseous just by standing up… ugh… so now I’m using Compazine to fix that…. What’s next you ask?
Thursday the 11th of September 2003 :/
A day of mixed feelings. I awoke in enough pain that I had to put a fourth patch on…. But once the pain was controlled I felt much better.
A dear woman whom I’ve come to know and respect fell today. Her name was Mary, but I called her Mimi… the fall caused enough internal bleeding that she passed away this evening. I know all those who love her are going to miss her… I’ll be one of them.
Stephanie sent me some information that her friend, Dr. Barbara Harper, had used when she was faced with terminal and inoperable brain tumors. The technique is rather involved but the doctor who developed it has had tremendous success. She only takes terminal patients in her clinics in San Diego and Mexico. We called her office and will speak with her tomorrow… in the meantime we faxed her the information she needs and followed it up with a FedEx. Her name is Dr. Hulda Clark and the way I look at it I have nothing to lose.
Wednesday the 10th of September 2003 :)
Linda had stayed overnight so that she could help schlep me to Kingston in the morning so I could get the secondary insurance done… and I did…. Yay… I came back and crawled into bed.
Little Mary stopped over for a cup of tea… that was nice. It turned out to be a very quiet day… I rested big time.
Ian is healing nicely and I’m glad of that
Tuesday the 9th of September 2003 :)
The morning was a complete mess… It started off by me hearing the boys pottering around getting ready for school, making a bunch of noise… I got up and reminded them that we were trying to sleep. Twenty minutes later I heard Trever, whose bedroom is directly above ours, doing what sounded like construction… turns out he was rummaging through his doors looking for something, I told him about the noise factor. Fifteen minutes later I heard, “Hey, I broke your nose once.. you try for seconds?” I was up and very wide-awake. I couldn’t believe they were behaving like this and after some heated exchanged I took the car from Shawn and decided that I would drive them to school myself… and I did.
It felt good to be doing normal stuff, but I would pay for it the rest of the day. And what a busy day it turned out to be. Aunt Pam, Aunt Toni-Ann, Kissy and Nuah, Linda, Mom and Aunt Rusty all came by to show their love and support, but it was too much and I ended up in a puddle.
Mariann and Robbie came by later too for a planned meeting to talk about the boy’s present and their future. We do the major stuff as a group. The meeting was a good one and when it was done the boys were included in the remainder of it.
Monday the 8th of September 2003 :)
I had a rough night, but a really good one as far as coming to terms with stuff. I’m going to share the toughest thought just in case there’s someone out there who is going through the same stuff… and who might benefit from my experience. The hardest thing I found was the thought that Ian would eventually fall in love with someone else… and every time he touched me I was happy for the touch, but also sad, ‘cause I knew that someone else would come to know and love his touch….. it made me incredibly sad. My mind would extrapolate the to the fact that someone else would also come to know the intimate side of the man I adore… the part that was reserved for he and I alone… and I would collapse inside like a deck of cards… ugh…. the irony was that there was a big part of me that was praying for his happiness whatever that meant, and whatever it took….. you can see my dilemma. Well, the answer that brought me great peace was found last night… I realised the time Ian and I share is ours… locked in time and sealed forever… no one can diminish or erase that fact and no one can change the fact that this time was ours… and ours alone. It may sound simple, but it took me a really long time to get there emotionally and it made all the difference… I’m grounded again, and much happier.
Later in the evening I called John Carroll, the healer and had an hour-long session with him…. I’m really feeling charged to fight back and kick some ass…. It’s about time!
All the stuff was copied and sent off to Sloan Kettering to see if there might be an experimental trial I could benefit from…. My fingers are crossed.
Sunday the 7th of September 2003 :\
Ian and I had our coffee sitting out in the sun…. we talked about how things would change and what some of the changes would mean. It’s all so very hard…. Thinking of a future that is bright but doesn’t include the both of us…. relocations… child guidance…. future romances… it all floods the mind and stings at first… a weird space. There’s a possibility that I’m doing this all wrong… okay, but hey - I’ve never done this before… to the best of my memory. I just want Ian to be happy, that’s the bottom line.
Aunt Pam, Aunt Toni-Ann, Kissy and Nuah came by it was good to see them… Our friend Tom Hoffay stopped over, which was cool and Stephanie and Linda came over too…. they treated us to a wonderful sushi dinner… ymmm…. It’s always great to hang with them. Later Aunt Toni-Ann came back to stay the night.
Saturday the 6th of September 2003 :/
I was really bummed today fro several reasons… My dear brother Rick had to head back to Georgia… I’m really missing him already… and I seem to be getting worse rather than better. I can see the strides that Ian is making and I can also see where I’m getting weaker… really sucks.
I needed some prescriptions that normally would have cost me about twenty dollars… but since the insurance got all messed up the bill is like two hundred and twenty something… oh well, at least I can get the stuff… Monday I’ll work on fixing the Medi-Gap insurance thing. Aunt Toni-Ann went and picked up the prescription for me… and my cousin Stephanie came all the was from New Jersey to see me and her sister Linda flew up from Key West to come too… they are so precious.
Friday the 5th of September 2003 :/
Today was a rough one… Ricky’s leaving to go home tomorrow and I dread his leaving…. He put a screen door on the kitchen, which was really super cool of him. He has to get home though and finish the moving into their new home. He’s been a Godsend.
Kris and Mel came over and they had the sweetest news…. They wanted to switch their wedding date from June of next year to December of this one…. So I could be there. I thought that was just the sweetest thing….
Since the cancer has metastasized into the bones I don’t see why they can’t just remove them…. But, does the world really need another politician?
Thursday the 4th of September 2003 :/
Please say a prayer for Richard S. … he’s at the stage of transitioning from this world to the next and your prayers will help him now.
Ian, my Ian, is healing nicely… thank God. I can’t wait for him to be all better.
I spoke with Jack Ruckdeschel who confirmed everything and, at my asking, told me that untreated I was looking at six to nine months… maybe more if I had a treatment that was successful. We discussed all the various options… he’s so good. There are many different things that I will be looking into. I really have no problem to try alternative stuff at this point, provided it resonates with me… and won’t compromise the quality of the life I have.
Mom and Aunt Rusty came over with some great yummy… Mariann did too… Aunt Pam stopped in and so did Phil and Jean. Funny thing was that at some point it all felt too real… to ‘event like’ and although it was cool to have everyone around it also became overwhelming ‘cause it felt like a birthday party… and that would make me think… no… it’s no one’s birthday… and suddenly it all became too real again… strange huh?
Wednesday the 3rd of September 2003 :\
Today was the first day of school for the guys…. We didn’t have the traditional breakfast ‘cause they didn’t really feel in the mood…. Okay. Mariann had stayed overnight and so did Ricky… just wonderful… so in the morning it was very cool to see them both straggle into the kitchen in search of coffee. At first Trever didn’t wanna go, but after a short while he got into it and I was very proud of him for going.
I talked to Ian later on and he was waiting on the doctor to discharge him. We made some small talk and then I made it clear that he was coming home tonight or I was coming there… either way… period.
Later on Robbie came over and so did Phil some special mushroom powder, which I was instructed to mix with water and drink… I did. I’ve decided that I’m gonna fight every inch of the way. Later I’ll organize a strategy and pull in some helpers and delegate some tasks…. But first I had to get Ian home and bring him up to speed.
Kissy and Aunt Toni-Ann stopped over with some amazing meal that Kissy had made with rice and turkey…. Delish…. I had just returned from the tanning salon having got a spray-on-tan so when Ian finally got home it didn’t look like he was ‘too late’… hehe… It worked great and I have colour. When he and Pat arrived everything was ‘normal-looking’ and we got Ian situated in bed. There really was no, ‘good-time’ to tell him of the mountain that was now in our path… so I closed the door and told him as gently as I could. Poor Ian… having just had abdominal surgery, laughing and crying were both equally painful and it made the whole thing that much harder.
The emotions come on you in waves… and there’ll be more to come as time goes by…. Sometimes a splash… sometimes a tsunami. Ian’s Mom will be staying with us to help in the recovery.
Please say prayers for Ian and I and the boys too… this is a really hard time….. for the whole family. And while you’re praying please say some for Richard S…. he’s in the hospital and he needs your help desperately.
Tuesday the 2nd of September 2003 :(
Today was a day I’ll find hard to forget. Ian was in the hospital and as he was running a little fever they decided to keep him. Mariann came over to help me if I need it… and it’s a good thing she did. I called to get the results of the PET Scan and the CAT Scan. I was told that they had to be given to me by the doctor, but you know how persistent I can be…. I was able to get a copy faxed to me…. Mariann translated it to me…. Unfortunately it doesn’t look very good at all. Apparently cancer has metastasized to the bone, which explains the pain I’ve been in. First thing in the morning I’ll call Jack Ruckdeschel and get the full scope of what I’m looking at…. I can’t breath a word to Ian while he’s in the hospital…. He has no idea…. I’ll tell him when he’s home and safe in my arms.
The boys were devastated and it’s a reality they don’t want to face… I can understand it… I’m going through the same sad patches as I contemplate my own mortality… and the worst part will be that I’ll have to go without Ian, my Ian… my buddy. But I’ll do what I have to do with as much dignity as I can muster.
Kristopher, Melanie, Aunt Pam, Aunt Toni-Ann, Kissy, Nuah, and Mom came to see me….. so surreal…. Phil and Jean came too…. even Ricky is flying up from Georgia and will be here soon…. But my Ian is in a hospital bed getting better… planning plans that he doesn’t know won’t include me. This is really hard….. telling him tomorrow will be even harder.
There’s a slight possibility that Mariann misread the reports…. But I doubt it… she’s a Nurse for over twenty years now, and beside the way my month has been going… heh…. I think not… even today Shawn went to the store to get groceries and when he pulled into the driveway the clutch just fell to the floor with a bang and won’t come up…. Nah…. I have a feeling she read them right… I have a sneaking suspicion that God has this dartboard with my picture on it….. hmmmm.
Monday the 1st of September 2003 :/
I have to start by thanking everyone for the emails and ecards for Ian. There is no possible way for me to respond to all of them personally, but I was so touched and humbled by the outpouring… thank you all.
Shawn had been taking care of me for most of the time while Ian was gone, but it became overwhelming for him… too sad. I called my cousin Kissy who came over and as if by magic I started to feel better. It’s hard not to feel good when I’m with her though. Later on she took me to Vassar to see my Buddy. It was so exhausting for me to get ready that I would have to stop and rest between steps. It’s crap to be this out of shape… but it’s been over a month now of dealing with this crap. No sooner did we get there than Kissy spotted a wheelchair and sat me in it. When we got near his room I hopped out… well, maybe not ‘hopped’… and walked as upright as I could into see him.
He looked so wonderful… a sight for sore eyes… I kissed his whole face and sat by him and heard all about his adventure in the operating room. He was in some pain and the nurse offered him some Morphine… lucky duck. After a while she returned and injected his line with the drug and before he fuzzed out I said good bye and kissed him again…. We had been there only about thirty or forty minutes, but it was about all I had to give. Ian’s Mom was wonderful and stayed overnight with him yesterday and will again today. I wish I could have been there for that guy the way he’s been there for me. I left him smiling as best I could and couldn’t wait to get to the wheelchair and get home. But thanks to my cousin Kissy I did it…. I love that girl.
Sunday the 31st of August 2003 :(
Another night of moans and groans… so lousy. I called the doctor who okayed a third patch in addition to medication if needed. I asked about possibly going to the hospital and was told they wouldn’t wanna go that route for pain. Very calmy I told him that calling what I was experiencing as ‘pain’ would be like referring to Isodora Duncan as a ‘dancer’… and I informed him I’ve been living like this for the month of August.
My poor Ian… while I was going through this he was having his own abdominal pain. It was getting worse and worse… he though he was constipated. I had him lie flat on the bed with his knees bent and asked him to touch where the pain came from he touched near his appendix… hmmm…. I remembered the test the doctor gave me when I was in fifth grade, (and had mine removed), I gently placed three fingers over the area and slowly pressed down… he winced after a short while, at which point I quickly removed my hand… he howled… I asked him which hurt more, the gentle press downward or the swift removal… he said the latter. That in conjunction with what I could feel was a temperature told me to get him to the ER… and Kristopher and Melanie, who where in town came and whisked him to Vassar. I’m going to wait to see what they say and if he needs to have an appendectomy I’ll head over to be by his side…. What the fuck is next?
Please keep Ian in your prayers, he was pretty upset and didn’t wanna leave me and well…. It’s all just too much.
They ended up operating and removing his appendix…. He’s okay, I spoke with him and he’s on morphine and in no pain… and his Mom is with him… I’m really sad I couldn’t be with him… my best buddy has his first operation and I’m stuck here. No matter how long I live I’ll never wish I could relive this month… ever.
Saturday the 30th of August 2003 :/
Last night was horrible and I found the only was to get relief was to take the oral meds too. I called the doctor and asked if two patches would kill me… the answer was no… so the second went on. The pain subsided for a couple of hours and soon I was back to the pills.
Ian was having some tummy aches, but in spite of it took such amazing care of me. This pain is just unrelenting and I so don’t understand the need for it.
Later on Mom and Aunt Pam, Aunt Toni-Ann and Little Nuah came to see me. The patch had stopped hitting the spot and by now I was taking the Percocet too. Mom stayed a while, but it was too hard to see me in such pain so after several hours she headed home.
Friday the 29th of August 2003 :\
Ian took me to Kingston to get the PET Scan… just as we had planned. Meanwhile Jack also wanted me to get a CAT Scan of the chest…. So at the last minute I was able to get them to do both…. very cool. The problem was trying to get me to lie still for forty minutes. With these damn joint, and now muscle, aches it was simply impossible. They re-calibrated the procedure to accommodate me but it required me to lie still for twenty-one minutes and fifty seconds… it was absolutely hell. I didn’t think I could make it but somehow, I did.
While I was getting the Scans Ian’s Mom was a love… she went to Poughkeepsie and got the prescription for the pain patches.
When I returned home they were there waiting for me… I put one on real fast… it started to work kinda fast too…. yay…
Thursday the 28th of August 2003 :(
Today was not the easiest… I spent most of it trying to resolve man-made fires. The MVP insurance, which was under Cobra, ends at the end of August. That would leave me only with Medicare, which is mandated if you are disabled. Okay, I knew this was coming, so a month and a half ago I was in touch with my MVP rep, Jason, to segue me into another plan with MVP when the time came…. He had taken all the information and wanted me to touch base at the end of August… Guess what? When I called I learned that MVP doesn’t provide secondary coverage and my guy Jason had misinformed more than a few folks and had been fired….. ouch…. So here I was between a rock and a hard place trying to figure out what came next. It took countless phone calls and I was finally able to locate a company the acts as a broker and matches up Medicare participants and the companies that will pick up the slack… phew… what a relief. Meanwhile I needed a PET Scan and wanted to get it set up for tomorrow, while the MVP was in place… believe me it’s easier to get an autograph from Christ…. But after an all day phone odyssey… it’s all set up for 11:30.
The Rheumatologist I was currently working with impressed me with his friendliness, but not his detective skills, so I had to let him go… I have an appointment with someone else.
Mom and Aunt Rusty returned from having a great time in Albany. I’ll try and get to see her tomorrow.
Wednesday the 27th of August 2003 :/
Still feeling punky. Aunt Toni-Ann and I were going to take our new friend, Richard to see John Carroll, the healer in Hurley, New York. I wasn’t up to the trip…. Dammit… so Aunt Toni-Ann took him and his wife Angela by herself… she is truly amazing.
Hours later I heard from Richard and his voice sounded so much more enthusiastic than before… Angela spoke with me too to let me know how great the experience was and how special Aunt Toni-Ann was… heh… I knew that all along.
Kris lent me a full body thing you can lay down on or sit on that massages you and has heat and all sorts of settings… wow… I think I’m in love with this thing… ahhhh.
Tuesday the 26th of August 2003 :\
Aunt Rusty and Mom came up for a short visit and it was really cool to see them and get to visit, even if it was briefly. In the morning they are heading to Albany for some fun with their cousin Nini.
It’s too weird how fast time goes…. Yesterday marked the nineteenth year since my Dad died of cancer… I remembered it in all the days leading up to the 25th but not on the day itself… sorta odd.
I spoke with the Rheumatologist and he has no clue on what it is. I told him I should see another doctor so I could get to the bottom of it and he said he had no problem with me seeing another doctor… I said I thought that was fair as I didn’t mind him seeing other patients… heh… I gotta get to the bottom of this.
Monday the 25th of August 2003 :)
Ian had to go to New York for some meetings…. He’s working on another fashion show and the season is drawing near.
I’m so proud of him and Shawn… ‘cause we would have been lounging in Hyannis right now except for me… and they just don’t even care. Boy am I lucky or what!
Aunt Toni-Ann came over today and she and I went to pay a call on Richard S. He’s a soldier in the war on cancer and a tough one I might add. We went over to see him to see where his strength was low so we could forfeit it with him. It’s so great to be able to give to others, one day it will be Richard’s turn too. Please keep him in your prayers… he needs them now, for both healing and strength. His wife Angela, is a caring and supportive woman who could also use your prayers. And hey, since you’re in a praying mode anyway, please say some Anne L., she’s in NYU Hospital and could use them too.
I was able to manage better with the pain, but I still can’t seem to understand the triggers… if any. I spoke with Jack Ruckdeschel and he doesn’t think it has anything to do with the chemo from last year… so it’s back to the drawing board.
Sunday the 24th of August 2003 :)
Mom came over to spend some time today… that was really nice. She brought over more great stuff… a roasted chicken… ymmmm. We just hung out and it was good… good to spend some time together.
Saturday the 23rd of August 2003 :)
A lot better today… the medicine seems to be working… Yay! Aunt Pam and Aunt Toni-Ann came over and they brought some of delicious treats that Mom had made and sent over… artichokes, stuffed with shrimp; Pork-chops stuffed with dressing made with ginger; avocados, stuffed with salmon and shrimp; meatballs, spare ribs and stuffed shells…. A whole bunch of great food all designed to help me gain more weight. Aunt Pam made fresh peaches chopped up with sugar and cream. What a bounty!
Aunt Pam and Aunt Toni stayed a long while and we watched Chicago… what a great movie. It was fun to have them visit… I’m lucky to have such wonderful family.
Friday the 22nd of August 2003 :(
Today was a bitch. There’s really no other way to say it. I usually take one Percocet every four hours and one Hydrocodone every four hours too. I space them two hours apart so that it works out that every two hours I’m taking something…. Well, I had the misfortune of sleeping through the alarm I had set for four o’clock so when the next alarm happened it was eight in the morning… and I was a one six foot two body cramp… and not happy. It took me the rest of the day to finally get ahead of the pain and the majority of the time was spent in the whine cellar.
I’ve asked the boys to please clean up after them selves… use a dish… put it in the dishwasher… not hard. When I crawled into the kitchen I found there were dishes in the sink… again… so I smashed each and every god damned one and put the pieces into the garbage… Trever, was standing there and I think he got the idea… I am so not fun when I’m in pain.
Please say prayers for a new soldier in the war on cancer… her name is Jean Yost and she’s having a mastectomy on September 4th and needs to get some of these great prayers going for her now, thank you for sending her them. By the way, I was also given an up-date on Mr. ‘H’ by his daughter… he’s okay, and wants to thank everyone for the prayers you sent. They sure are magical.
Thursday the 21st of August 2003 :)
Ian and I went to get Mom’s car and schlep it to Frankie at Salt Point Auto to get an estimate on the repairs… Frankie was a real gentleman and took care of her in a big way… He was really a pal.
After taking the short trip to Salt Point, I realised the trip to Cape Cod had to be delayed… there’s no way I would be able to do it… so the ocean must wait for now.
Wednesday the 20th of August 2003 :)
I’m starting to see a little change in the level of pain I’m having… yay…. And I hope it keeps getting better.
Mom popped over for a brief surprise visit… it was really sweet of her to stop over. Later Aunt Toni-Ann came by and stayed for a long while. We talked and laughed and it was nice to spend the time with her.
My Joints still hurt, but at the level of an eight than a ten, (ten being that pain which makes you cry out uncontrollably).
Tuesday the 19th of August 2003 :)
Drove to Albany with Ian and met with Darroch. He took one look at the protrusion and recognized it as a suture that is more pronounced due to the fact that I’ve lost too much weight. He told me I have to gain weight and recommended I go on Megase, a drug that promotes an appetite… (If I wanted he could put me under local and remove it now… but there was no real danger). I called Steve Jacob and he agreed to order it right away. Meantime, Ian has agreed to be a persistent ‘food coach’ in order to ensure my success. I even asked my Mom if push came to shove if I could live with her for the week and she could be an alternative if Ian can’t and she agreed, so we’ll see. I want to gain about seventeen pounds.
As soon as we returned home Ian went out and got Slim Fast… they come in all different flavors and they taste much better than Ensure too.
Monday the 18th of August 2003 :)
Ian and I have know each other for nine years and four months…. how neat.
Well, today I was taken off Vioxx … blech… and placed on Celebrex and the neatest little pill in the whole wide world… Percocet…. Oh boy, is that a pretty little pill. Until they can get rid of the problem… Percocet and me are pals!
It was such a great pleasure to be free of the torture… the blood tests all came back a second time negative… we’re just waiting on the Parvo results. Jack Ruckdeschel returns to his office tomorrow so I’ll be speaking to him too.
In the morning Ian and I are heading to Albany so Darroch can check out what appears to be a loose staple that’s trying to come out of the abdominal incision…. A staple…. hmmm… Maybe we don’t need the Operating Room… maybe ‘staple removing’ is ‘a lay on his desk and don’t answer the phone’ sorta thing… hmmmm… guess we’ll find out in the morning… I mean, part of me cares, but the rest of me is on Percocet.
Sunday the 17th of August 2003 :\
Today I got out of bed to go the bathroom only. I didn’t wanna push it and in the morning I have to get the doctor to change pills… or doctors… this is ridiculous. We have reservations in Hyannis, but if this persists there is no way I’m leaving the house.
Saturday the 16th of August 2003 :(
HAPPY BIRTHDAY Olivia and Mary Grace !! Best part is Ricky’s home in Atlanta to be there with them.
Today was the worst so far... pain wise… and I did everything I could to stay out of it’s way… very unsuccessfully.
Poor Mom, a pine tree was stuck by lightning and landed on her porch roof… it didn’t smash it but it messed up her television reception and now she has to get the tree off the house… brother.
Friday the 15th of August 2003 :\
I didn’t get much relief as yet from the Vioxx so I called to make sure it wasn’t an ‘instant’ drug that simply wasn’t working. Alan wants to give it four days so by Monday we should have a clue. Meanwhile I could do nothing but the circuit… pills… whirlpool… more pills… and I forget every four to six ours as needed… heh… more like every hour or two.
Kris stayed over too… he had a class reunion to attend and stayed… that was nice.
Thursday the 14th of August 2003 :\
The day started with a trip to meet a Doctor named Alan Fischman, a Rheumatologist, who was going to help me by figuring out where all this damn pain is coming from and how to get rid of it…. it sure does make me cranky… I drove myself to see him and didn’t take any medication at first so he could see the whole picture… it didn't pan out. I was stopped at a traffic light I positioned my leg to shift getting ready… just not fast enough… as the light turned green and was going into first when this mean and nasty looking woman in her late sixties laid on the horn… with real gusto… like she had a hot date or something. I figured she could use more God given compassion so I directed her attention toward the heavens with the kind assistance of one of my fingers and I think she received the message ‘cause I refused to move and inch until she bowed her head in what I assumed was prayer.
I went on my way occasionally howling in pain until I finally pulled over and took some pain… I had to. There was too much hurting. To make matters fuzzier, I couldn’t remember the building number, but as I pulled into the parking lot… guess who pulled in too… yup… My lady of the light. Hmmm…how funny that we should be going to the same place… she recognized me too… I was willing to ignore her until she gave me that ‘sour lemon’ look… that’s when I yelled out, “Great, now I know which car to key.”… She didn’t move…. I went into the building only to find I was in the wrong one… so I left… as I got into my car she got out of hers… hrmn.
The meeting with Alan was a good one… although nothing was determined… more blood tests… scheduling a bone test…. Trying Vioxx… does this hurt… I dunno.
Then around four O’clock the lights went off… turns out it’s the whole area. Trever came over and apologized and we talked a very little… it didn’t make too much of a difference… I’m getting hardened somehow… anyway, we hooked up the generator and turned on the A/C and the fridge and the TV… the generator’s pretty loud, but I’m grateful to have it. Later our neighbor came over and we stored his stuff in the fridge too.
Aunt Pam came by with some Porterhouse steaks, but she didn’t stay ‘cause of the gasoline smell… we were in the process of straightening all that up but she had to leave…. Mariann came over and we had a long heart to heart talk about all sorts of things… she shared her faith with me… and truthfully for the first time since this whole adventure started I don’t recall really feeling without it until very recently… it’s a lousy place to be… but I couldn’t stop myself from wondering why so much… not just the illness, but the ‘side-effects’ of the illnesses… the ripples that branch out from the center… then to see the light at the end of the tunnel only to find it on the front of yet another train…. Well, it just made me wonder if it’s not some callous cosmic game of cat and mouse… Mariann stayed talking with me trying to help me get my understanding back…. I can’t thank her enough for that gift. She really helped to make a difference.
Wednesday the 13th of August 2003 :)
It was a hot and sticky day by any standard and I was in a great deal of pain, but also very determined… and did I mention heavily medicated? Anyway I was hell bent to make the appointment in New York and see if I could rally the support of Skadden, Arps, Slate, Meagher & Flom, I rented a wheelchair so that I wouldn’t have to walk as much. Ian was a buddy and a half and ran me all over the place… and into things, but that’s another story. When I got to their offices on the 37th floor of the Condé Nast building it was cool and very chic. When I was in my early twenties I would often visit Alexander Liberman, a dear artist and friend who had worked for Condé Nast for years… but in a different address… on Madison Avenue. The Attorney, Meredith Fried Saphier and some others in her team were in a conference room and I joined them and for the next hour and a half they heard my ideas and my vision for ‘A Stitch In Time’ and when we were through she agreed to represent the Foundation and to set it up correctly. There was a great deal of work that had to be done over as the last attorney had written them improperly… so everything really did work out for the best. This is an amazing Law Firm and I wish I had come to them first… c’est la vie!
The train ride back was just a dreamy float on a sea of Hydrocodone…. All I could think about was the events of the meeting and the enthusiasm I encountered… Onward… Onward!
Tuesday the 12th of August 2003 :/
Ian had a productive day in New York… I spent the day resting in preparation for tomorrow’s trip to the city.
Today I had a real ‘dark night of the soul’, as my Mom would say… I was really upset at the entire situation and the pain and, well, everything… UGH…. I was just a bear. If God were around he would have been well advised to wear Kevlar… I was in a very rare mood.
I asked Trever to stay away from the house for a while… on Sunday I had asked him to mow the lawn, as I had originally asked him last Monday, and he was too busy… he didn’t decline, he really just refused and when I asked him to please do it so I wouldn’t have to he invited me to if I felt inclined… so I did… and he stood with two friends and watched. I made my feelings known to him then about staying over, but today I was able to make them sink in…. I was in no mood for any crap from him either.
I was watching something and I just got a wild craving for lobster… I dunno where it came from or why, but it was intense… next thing I know Ian is standing there with a live one in a bag… he’s just…. Ian!
Monday the 11th of August 2003 :)
HAPPY BIRTHDAY Frankie Leigh!!
Thursday I see a Rheumatologist… hmmm… We have to get to the bottom of this mystery. Ian is going to the city alone in the morning as I have to be sure to get there Wednesday… I rented a wheelchair just to be on the safe side too.
Sunday the 10th of August 2003 :)
Our friend Eleanor Lambert turns 100 years old today… WowZer… HAPPY 100th BIRTHDAY… amazing woman… and in the right light she doesn’t look a day over 99 and two months!!
Ian and I stayed home… close to both whirlpool and pills… but the good news is I’m not in pain. I guess I could have just plain overdone stuff yet again. Oh well, I plan on going to New York Wednesday if I have to rent a wheel chair, but maybe I won’t need to.
Saturday the 9th of August 2003 :\
Breakfast was a bowl of pain killers with some sugar and milk… not really… we didn’t have any sugar… I woke to such pain that I couldn’t stand it… I got some shorts on and made my way to the spa where I crawled into the hot tub. It was amazing. The pain disappeared like tarnish did in a bowl of Tarnex. It was so amazingly profound to be pain free that I started to cry… For the next three or four hours I went from tub to chase to tub to chase… Ian thought we should head home, I thought so too… as long as we could fit the hot tub in the Pathfinder. The pool boy suggested aspirin so I asked Ian to get some, what the hell I was on everything else and still the only relief came in a tub…. What did I really have to lose? Funny thing was… they worked… so as soon as I could bear it we left and headed home.
We stopped along the way to find more relief if possible… One pharmacist had some devises that would generate a chemical heat that you wore around your waist and some for your knees… they were okay, but I was looking for something in a forty-long…. heh!
Friday the 8th of August 2003 :\
We got up early and found it was raining.. .no problem. Ian and I decided to walk around and see the apartments on the list I had detailed. The first group was a two bedroom duplex with a terrace that was twenty by twenty-seven feet wide… amazing. Doorman building, elevators, pets okay, fire and sound proof, all the amenities, and access to gym, parking and supermarket without ever going outside, (very handy the woman said when it gets to be thirty below zero!… and all the utilities were included… for $2,100 Canadian a month… unreal. I heard all about the carpet and painting being done to suit us… Ian heard thirty below zero. After thanking her for the tour and exchanging info… Ian and I went out to get a bite. We really pretended that we lived there and embellished the details of our careers and after a while we realized that as great a city as Montréal is…. It’s too isolating, we know no one, family is too far away… and there was still that crack about thirty below zero. It’s definite…. We’re moving to New York… Je me souviens Québec.
The walk we took was a minimum of three miles and I found myself in pain… and it was getting stronger…. Ugh…. I t got to the point where I was tempted to just go home… hmmm… as I recall the last time I was here I was under the weather too…. Maybe it’s a damn good thing I don’t move here after all… I’d be dead in a month.
By the evening I had been reduced to a pill popping pile of aches that made ugly noises whenever I breathed. It was, a very, very long night.
Thursday the 7th of August 2003 :)
We started off on out adventure a little delayed due to some business that needed attending, but soon we we’re at Tom’s door and the holiday became official. The ride to Montréal was shorter than I remembered… we left at noon and the ride was so beautiful… we stopped along the way several times and got there at five thirty… not too shabby. The hotel was the beautiful Marriott Château Champlain … a really great spot.
We were joined by a friend of Tom’s, a fellow by the name of Peter who had gone to school in Montréal and knew the city inside and out. As Ian and I were also apartment shopping and Peter also resided in New York, he was able to ‘translate’ the sections in terms were more familiar with… very cool. I spent some tome planning the next days activities foe apartment hunting and afterward we all went out to some clubs.
Wednesday the 6th of August 2003 :\
Shawn just told me that Keriann’s Dad isn’t doing very well and needs a lot of prayers. He went to have a second lung operated and was told there was just too much. I want him to explore other options, but so far I don’t think there’s any interest on his part. Please say prayers for Richard S. and for his family. Please also add Lynelle P. to your prayers… she’s a new soldier in the war and if she’s anything like her granddaughter, she’ll kick it’s ass!
Kris popped over and that was a great treat. Later, I went to visit Aunt Toni-Ann and Kissy… got to see little Nuah too… so adorable. I visited for a while and then went to see Mom. She’s not very happy at the prospect of us moving to New York or Montréal either. But it’s very important for me to find what I’m after and wherever it is – it’s not here… hrmn.
Ian and I leave with Tom Hoffay for Canada in the morning and I don’t plan on updating the site until we return Sunday. I have some things I wanna scope out and besides, it gives us a chance to review the options.
Tuesday the 5th of August 2003 :)
It is so marvelous to walk without pain and write without feeling the mechanism of the bones… Funny I should get into my forty’s before realizing there really is better living through chemistry… hrmn.
Ian had a productive time in New York and the interviews went well, and while he waits to hear the upshot, there’ll be others. Meanwhile I developed a private system… I look at everything and ask myself, “do I really wanna schlep this to New York… or Montréal?” If the answer isn’t a fast “you bet” - it’s tagged or relocated to the garage… just trying to organize…. The boys didn’t understand why they had tags on their clothes, especially since they weren’t there when they put them on this morning… cough… yeah.
Monday the 4th of August 2003 :(
I didn’t go to New York… I couldn’t … my damn hip almost did fall off! I woke up at midnight in pain… took a half a pill… woke up at two-thirty, in more pain… took another half…. Woke up again at five o’clock howling – at this point I took a whole one. I just couldn’t handle the pain… it was too much… every turn was painful, staying in one position brought relief for half a moment then started to hurt too, which would cause me to move, which was painful… and so on… ugh… at eight o’clock I just said frig it and got up… dealt with the electric pain of it and came to the conclusion there was no way I could board a train… or leave the house, or board a train if it came through my house for that matter…. I called the attorney and explained the situation and very thankfully the appointment was rescheduled to next Wednesday… yay!!… I knew I’d be all better by then, (or dead by my own hand)…hehe… so either way next Wednesday was fine.
I called the doctors office and explained the situation. A decision was made to get me stronger pain meds and start me on ten-day run of Prednisone… If it was indeed a virus, as it was sounding more and more, (the damn blood tests aren’t done yet) then this should work, and work fast, a great side effect was increased appetite… very cool. The meds were ordered, Ian went to get them, I took them and within four hours I was feeling a difference. Now as I type it doesn’t hurt my fingers…. my shoulder blades are feeling fine and my appetite is picking up speed… Thank God…. ‘cause I was a man on the edge.
Tom Hoffay came over to share a dinner with us and talk about the trip to Montréal this week. This morning it crossed my mind that if the situation didn’t get better I’d be forced to cancel, but it looks like we’re on the right track.
Sunday the 3rd of August 2003 :)
*YEOUCH*… I plan on calling Steve in the morning to see if they know what the hell this is, but brother… I hurt. All I know is I had better be better by the morning – ‘cause I’m going to keep the appointment with Skadden, Arps, Slate, Meagher & Flom…. I don’t care if my hip falls right off!
Saturday the 2nd of August 2003 :/
Aunt Pam moved some of her stuff into her new place… very cozy and I can see that she’ll be happy there. Ian, Shawn and I went to lend a hand. Aunt Toni-Ann was there and we got a good chunk done.
Later on I just stayed home instead of going out with Ian ‘cause this joint pain stuff seems to be getting worse.
Friday the 1st of August 2003 :)
Wow… the time is starting to fly. The pain in my joints seems to be spreading so Steve Jacobs ordered an antibiotic… hope it’s better soon…. This is yucky.