i've been doing a lot better lately. The last 3 visits to clinic have not had to have any transfusions or meds and stomach is feeling a bit stronger. Doctors are FINALLY letting me return to CT today - looking forward to getting home. Will have to come back here 1 or 2x a week for a while to have blood counts, etc. checked. Have spent my days at the Ronald McDonald house watching the Yankees catch up to the Red sox - would like to mention we are only 71/2 games behind . . . playing the Mets this weekend so we should continue to catch up!
Thank you out to everyone for all the support for the 70 days that i have been here in Boston.
P.S. : Thank you to: Jayme, can't thank you enough for all sports memorabilia that you gave me - its beyond anything i could have asked for. Thank you to Lisa, for delivering gifts and coming to visit me.
Friday, June 15, 2007
Thursday, June 7, 2007
Day +55
Have had a couple days off from the hospital and just hung out in our apartment at Ronald McDonald house. Starting to feel more like a human being again. Got out on the porch a few times. Today i am at the Jimmy Fund Clinic at Dana Farber again and looks like its gonna be another long day - need to get blood trans and IV meds. Just saw my buddy Jacob from Dr. Joes office - waved at him thru the window - glad to see him looking so good and speaking about looking good . . . how bout them Yankees !! - 10 1/2 games and closing . . .
Monday, June 4, 2007
Day +51, +52
Finally got out of the hospital late Sunday afternoon. Still not feeling too good - still nauseous and weak but change of scenery might help. Today i am at the Jimmy Fund Clinic at Dana Farber and looks like its gonna be an all day thing - need to get platelets and IV meds. I get my own room with tv, and found a wireless connection to computer. And how about A-Rod last night!! . .
Saturday, June 2, 2007
Day +50
Didn't quite make it out the door of the hospital today. They need to check some of my levels tomorrow morning so i have to stay one more day Docs say that tomorrow i should be getting out . . . i hope they mean it this time! . . .
Friday, June 1, 2007
Day+49
This is officially my last night at the Childrens Hospital. Want to thank everyone for all the cards, gifts, blog comments, prayers, and support for the last 57 days here at the hospital. I will be moving on to Ronald McDonald house tomorrow for a couple of weeks and will try to keep blogging when i can (no internet there). Nurses are all very upset that i am leaving but i guess they will have to get over it. They are sending me out of here with a ton of meds so i will be spending most of my time just trying to get them all down. As i speak it is 9-3 Yankees - things are starting to change for the better in all directions . . . the comeback begins . . .
Thursday, May 31, 2007
Day +48
Today was good. Had pt and docs are happy with how i am doing and, unless anything else comes up, they are aiming for a saturday release. The nurses are already starting to cry . . but they will have to get over it. Did find out my tutor will keep seeing me until i go back to CT - i think i can deal with that.
Wednesday, May 30, 2007
Day +47
Another good day. Got up earlier today and had a nice long 2 hr session with tutor. Also had pt and then pretty much relaxed the rest of day. Rumor has it i could possibly be getting out this weekend . . . of course, can't leave Boston area for a couple more weeks - will have to go to the clinic at least 3x a week until they say i can go back to CT.
Its about time - my Yankees finally gained a game against the Red Sox . . . maybe things will start to turn around for them - i still have faith . . .
Its about time - my Yankees finally gained a game against the Red Sox . . . maybe things will start to turn around for them - i still have faith . . .
Tuesday, May 29, 2007
Day +46
Overall, a good day today. Docs removed 2 meds from my list which maybe means getting closer to getting out . . . ?? . . . but, of course they won't say. Finally was up to pt today - thank god i can start resculpting again. Started eating a little bit more too. Goddamn Yankees failed me again . . .
Monday, May 28, 2007
Day +45
Today was kinda a repeat of yesterday. i did manage to eat 1/2 of P&J and some mac&cheese . . . real gourmet. Got out in the garden again. Eric - is your golf course private or public??. . . and who will be driving the carts . . . (hopefully the blonde and not you)
Sunday, May 27, 2007
Day +44
Today was a better day. Actually tried to eat something for the 1st time in i don't know how many days. They started my new meds for GVHD and i guess they must be helping. Went out to the garden again today because i was finally feeling up to it again - no one else was out there so nothing much to look at. goddamn yankees . . . .
Saturday, May 26, 2007
Day +43
Another crappy day - still don't feel good. Results of biopsy: mild GVHD of gastro tract, started me back on steroids today. . . hope to feel better in a few days. Guess i will still be here when Clemens comes to town . . .
Friday, May 25, 2007
Day +42
Felt like crap again today. Had scope and biopsy procedure in afternoon (didn't help my nausea). Doctor found out i was a Yankee fan and threatened to put a tattoo of Big Papi on my ass while i was knocked out . . . would not have been happy about that. When i got out of OR i checked just to make sure he didn't. Will find out results of biopsy tomorrow . . .
Thursday, May 24, 2007
Day +41
Totally exhausted from sleep test. Not only did they put the same electrodes all over my body but this time they added a special breathing mask and then told me to go to sleep - not happening. Spent all day sleeping to try to catch up. Tomorrow they scope and biopsy my GI tract - not looking forward to that but they will put me out so i won't know whats happening.
Wednesday, May 23, 2007
Day +40
Went out to the garden again today. Still not feeling too good. Have to go prepare for my sleep test tonight . . . zzzzzzzzz
Tuesday, May 22, 2007
Day +39
Day started out ok. Took a walk in the hall and then went out in the garden and took in the sights this morning. Things started to go down hill again in afternoon when i got really nauseous again. New team of gastro docs came to see me - they might have to scope and do biopsy of my stomach and small intestine later this week to try to find out what is causing problems. Can't believe im still here after all this time - was hoping to get out this week but doesn't look that way now . . .
Monday, May 21, 2007
Day +38
Had a lovely tutoring session this morning. Got nauseous again this afternoon - Doctors trying to figure out what is causing it. They also want to send me for another sleep study wednesday night but i don't want to go - just want to feel better and get out of here. Yankees beat the Red Sox tonight - that always makes me feel better . . .
P.S. thank you to: the Goughs for the gift package!
P.S. thank you to: the Goughs for the gift package!
Sunday, May 20, 2007
Day +37
Another quiet day. Still don't feel too good. Felt better after the Yankee game against the Mets tonight . . . "Lets Go Yankees" . . .
Saturday, May 19, 2007
Day +36
Relaxing day today. Weekends are always quiet - no pt - no tutor. Still in iso - not much i can do - so just hung out in bed all day. Might get off restriction tomorrow and be able leave the room. . . maybe . . .
Friday, May 18, 2007
Day +35
Sleep test last night was ridiculous. They wheeled me and my bed to another floor. They stuck electrodes all over my entire body and then told me to go to sleep. . yeah! Woke me up at 6 am and sent me back to my own room. i was exhausted from all the traveling. Was feeling nauseous again, took the pot pill and basically slept all day.
P.S. : yes Eric, i know who won %&!@!#!!!!
P.S. : yes Eric, i know who won %&!@!#!!!!
Thursday, May 17, 2007
Day +34
Felt kinda sick today - threw up for the first time in a few days. Resting up for my sleep test tonight zzzzzzz
Wednesday, May 16, 2007
Day +33
Another slow day today. i did however have my private tutoring sessions - she had another lovely skirt on today so i let her come back in the afternoon for a 2nd session. After tutor was supposed to have pt but she never showed up and boy, was everyone pissed. My nurse called and yelled at pt coordinator - they promised to be here tomorrow but we will see. Don't want to fall behind in my body sculpting - need to keep up with Corey and JC. Tried to get on line to play Halo 3 Beta but system wasn't ready yet - another disappointment. Tomorrow night am scheduled for a sleep study evaluation so they can check on my oxygen problems when i am sleeping. At least i get to leave isolation for 1 night and go to another room on another floor. Thats about as exciting as it gets around here. Gotta sign off now to watch Lost.
Tuesday, May 15, 2007
Day +32
Today is 40th day ive been here - done as much time as Paris Hilton will have to do - probably more. No word of a release date yet. Had pt today but have to say i truly enjoy my education up here more. pt actually made me move today. i gave it my best effort - need to sculpt my dessimated body (Lisa you have a lot of work ahead of you). Overall it was not a bad day. . .
P.S. Eric thanks for fixing the door
P.S. Eric thanks for fixing the door
Monday, May 14, 2007
Day +31
Busy day. Had visitors - aunt Deb and uncle Ern (thanks for coming to see me and making me laugh). They took my parents to lunch at the same time my tutor arrived (very good timing) - first time with tutor in my isolated room - discovered education is a wonderful thing . . . got lasix again tonight and it is working overtime.
P.S. thanks to: Ernie - for the rock . . . and to Mrs. B for B.B. package
P.S. thanks to: Ernie - for the rock . . . and to Mrs. B for B.B. package
Sunday, May 13, 2007
Day +30
Today was slow day, took it easy in my room - spent most of day in bed. They never let me sleep at night so have to catch up during day. They disconnected me from my med pump today for 1 hour but had no where to go - so went back to bed. No tutor on sundays - i was a little disappointed - ready and willing today in my isolated room. Ate something today(even though it was only 4 Cool Ranch Doritos) as a gift to my mom for mothers day. Wishing all you moms out there a happy mothers day.
Saturday, May 12, 2007
Day +29
This morning i woke up with hard core itchy rash on my back. Come to find out it is zoster (shingles) - common for transplant patients im told. It doesn't hurt, just itches like crazy, contagious to those who haven't had chicken pox, and doctor said this will set me back at least a week if not longer. Because of this, i had to transport to another room. its an isolation room so no one can see or talk to me unless they go through an airlock, glassed in entrance first- so im pretty lonely. No more trips out into the hall or into the garden - basically cannot leave my room until it clears up - whenever that is! On the upside this gives me more isolated time with my tutor. Other than that, it was a great day . . .
P.S. im ready to party Michael!
P.S. im ready to party Michael!
Friday, May 11, 2007
Day +28
Another sleepless night. Nurses woke me up every 30 mins for vitals. Lasix again this morning - peed every 20 mins - exciting but exhausting adventure - kidneys seem to be working today. Managed a shower and 2 tutoring sessions (she was wearing a very short skirt today) . Got some new meds that look like yellow paint and tastes like it too. Made me feel really crappy and couldn't handle pt after that (sorry Kathy H.) . Kev, sorry haven't played xBox in a while - it has been a long, long time ive been stuck in this hospital and haven't felt up to it yet. Glad to hear you joined the golf team and yes we will play this summer so keep practicing. Eric, i did notice you are "a little chubby and have only a partially developed brain" - both are pretty obvious . . .
P.S. thank u to: Michael White for your special gift - i know how much it meant to you and means a lot that you gave it to me. Your letter gave me a real boost - really can't thank you enough . .
P.S.S. thank u to all: "ELBBC" (Browns, Bottinis, Ossos/Imbriacos, Rotchfords) for the very large "Official Boredom Buster Gift box" - already hung up hoop on door and practicing my shot!! . .
P.S. thank u to: Michael White for your special gift - i know how much it meant to you and means a lot that you gave it to me. Your letter gave me a real boost - really can't thank you enough . .
P.S.S. thank u to all: "ELBBC" (Browns, Bottinis, Ossos/Imbriacos, Rotchfords) for the very large "Official Boredom Buster Gift box" - already hung up hoop on door and practicing my shot!! . .
Thursday, May 10, 2007
Day +27
Little to no sleep last night - woken all night for blood pressure, temperature, blood trans and lasix (again). Got ready for pt today - they never showed up - really pissed me off. Went back out to the garden as well today - it was beautiful outside. Took a walk out there even though sadly a very short walk. Counts are still coming in slowly - if i keep staying strong i could possibly be leaving by end of next week??? Kidneys and oxygen are still an issue. Dave - what's the latest on the coach for next year?
Wednesday, May 9, 2007
Day +26
Worked with the tutor for the first time this morning - let me tell you, she is an extremely young gorgeous blond, however it still involved school work so it still sucked. Went out to the garden in afternoon and the tutor found me out there again for even more tutoring (i think she really wants me) Had pt today and actually worked out - some serious ankle flexes and went for another walk down the hallway - way too much for one day!
P.S. thank u to: the Thomsons - love the Yankee t-shirt - front says "There never was a Curse . . . " back says "The Red Sox just sucked for 86 years. Reverse That!" - it will piss off many die hard red sox fans here!
P.S. thank u to: the Thomsons - love the Yankee t-shirt - front says "There never was a Curse . . . " back says "The Red Sox just sucked for 86 years. Reverse That!" - it will piss off many die hard red sox fans here!
Tuesday, May 8, 2007
Day +25
Counts continue to improve - slowly. Wheeled around the garden again today, the sights were very nice - and im not talking about the flowers. When we got back upstairs near my room i took a walk down the hall again - not quite ready for Dancing with the Stars yet. pt showed up too late, i was already done - told them to come back tomorrow.
Monday, May 7, 2007
Day +24
Met my tutor today - and that was enough, will open books another day. Ms. Mantoni/Ms. Kelly can i get a credit for the blog??? Walked all the way down the hall and back today. Blasted all the Red Sox fans along the way about The Rocket. (Mr. Mountain - say hello to my lil friend ROGER!) Thinking about walking again tonight.
P.S. Eric - pt is a good thing, not laying around and pestering the nurses like you would do.
P.S. Eric - pt is a good thing, not laying around and pestering the nurses like you would do.
Sunday, May 6, 2007
Day +23
Better day again today - ROGER CLEMENS!!! - How about that uncle Ern??! Very active day - kidneys seem to be somewhat slowly working again - actually got temp unhooked from med pumps and wheeled off the floor and outside into the garden for 5 mins. Took another road trip down to x-ray in the afternoon. Very tired tonight from all the traveling. . .
Saturday, May 5, 2007
Day +22
Today was a little bit better - kidneys still a problem but lasix worked somewhat, oxygen levels higher - overall . . . better day . . .
Friday, May 4, 2007
Day +21
First of all, made it through the night with dad . . oxygen problems all night so we didn't get much sleep. Still having problems with blood pressure, fluids and capillaries too so had to take a trip to x-ray and later had to get ultra sound of kidneys and meet with more doctors. They are trying to blast my kidneys into action with something called lasix - hasn't started working yet, could be another long night. Good news - actually had ANC count over 500 again - 3 days in a row - so have officially engrafted - would be great if other problems would resolve and if i didn't still feel like sh$& - they didn't even make me do pt today . . .
P.S. thank u to: GiGi - thanks for the gifts . . . when I get back to Dr. Joe's be prepared for a extreme game of candyland!
P.S. thank u to: GiGi - thanks for the gifts . . . when I get back to Dr. Joe's be prepared for a extreme game of candyland!
Thursday, May 3, 2007
Day +20
No drama so far today - might be some tonight . . . they gave me some laxatives today and dad is staying with me for the first time overnight so will see how that goes. Eric - i might really need that yankee toilet paper tonight! Counts went up again today, doctors were happy again and are taking one of my meds away. Went all out in pt today, walked all the way to the door and back, really stepping up my game. But hey . . . i still feel like sh$&!
P.S. thank u to : Sandy Sandberg for gift box with yankee stuff and book - very nice!
P.S. thank u to : Sandy Sandberg for gift box with yankee stuff and book - very nice!
Wednesday, May 2, 2007
Day +19
Started the day with some drama - puddle of blood on my bed due to the fact one of my lines pulled off and instead of stuff going in, blood was coming out (not sure for how long - but was impressive) Still having some oxygen and capillary leak issues. ANC blood count is up again today - might be on my way to engrafting but not official until it stays above 500 for at least 3 days in a row . . . doctors were happy with progress - i might be too if i didn't still feel like sh$& . . .
Tuesday, May 1, 2007
Day +18
Started my day early this morning by one of the doctors putting what looked like a space helmet over my head for 20 mins (to measure if im getting enough nutrients in my tpn - yeah i don't understand it either) Having some oxygen issues today . . . must be that 5 minutes of pt i dominated in today. Rest of the day spent sleeping - counts still slowly coming up . . . still feel like sh@& . . .
Monday, April 30, 2007
Day +17
Still feel the same today- had to get platelets and blood - white blood counts continue to slowly (i repeat, slowly) move up a little. Was offered pt and tutoring today - passed on both, thank you . . .
P.S. thank u to: aunt kathleen for gift package and aunt marsha for yankee pants (Eric - the yankee toilet paper would have been nice . . .could have used it today)
P.S. thank u to: aunt kathleen for gift package and aunt marsha for yankee pants (Eric - the yankee toilet paper would have been nice . . .could have used it today)
Sunday, April 29, 2007
Day +16
Still feel like sh@& - white blood counts went up a little today again - zzz most of the day - yankees lost . . .
Saturday, April 28, 2007
Friday, April 27, 2007
Day +14
Well, think i am in contention for another achievement award on 6 West . . . yesterday I had a serious bloody nose for 2.5 hours - was very impressive and really got the attention of my nurses and doctors. After they pumped me up with many units of platelets it finally stopped (then started again for little bit). They also did a ultrasound on my neck yesterday to make sure there were no clots because it became all swollen. All part of the healing process they keep telling me. . . today my white blood counts went up just a little (the right direction at least) and i felt better than yesterday. Got all pills down, did my shower and pt - a few exercises in bed and half a walk around the bed - continuing to sculpt the body. Now that i just saw the score for the sox-yankee game im ready to hit the morphine button and go to sleep again.
P.S.- thank u to: the Anthonys for the Yankee blanket and chocolates to bribe the nurses and to Amy and everyone at Dr. Joe's office (and Aylwards) for the creative gift box with lots of Yankee stuff, Chuck Norris tshirt (and especially for the nice message that Dr. Joe wrote on the card . . .)
P.S.S. - Eric - you should be experienced at treating burns . . .
P.S.- thank u to: the Anthonys for the Yankee blanket and chocolates to bribe the nurses and to Amy and everyone at Dr. Joe's office (and Aylwards) for the creative gift box with lots of Yankee stuff, Chuck Norris tshirt (and especially for the nice message that Dr. Joe wrote on the card . . .)
P.S.S. - Eric - you should be experienced at treating burns . . .
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