A Week of Updates- Happy New Year

I guess in being off from work for a week, I somehow managed to take a week off from blogging...
ooops

Sunday, December 28: Chris was feeling better. His dad and brothers Tommy, Danny, and Brian came. Chris hadnt seen Brian in over 10 years- Brian was only 6 yrs old or so back then... Brian was only a baby when Chris's mom left her family. This was the first time I met Brian...
Chris has been pretty sleepy and quiet.. but he was really excited to see his dad and brothers again. they brought a clifton newspaper, more pictures, cheesecake, etc... They really cheered him up even though he might look a little non-responsive... His dad was funny, asking how the bone marrow tasted... and other funny things that made Chris crack a smile...
I went home to have dinner with some relatives and whatnot..
My depression moment of the day was watching my Cowboys lose to the Eagles -- of all teams.. the Eagles... AND because Tampa Bay lost, the Eagles got the wild card spot... ugh... sadness in the land of Jennifer...
Later on Sunday, Jeanie came to visit Chris and me... we chatted with Chris.. watched Chris rest... and eventually we left.. she drove me home so that I could leave my car at the hospital..

Monday my dad drove me back to the hospital.. I got a bunch of cleaning done at home during the week... Being that I havent been home much in 2 months, the laundry doesnt get put away.. luckily my mom washes out clothes but i have to sanitize the house before Chris gets home.. which is in the near future depending on the diareaha and walking status...
I wish cleaning services (maids) were cheaper because with Chris's immune system being suppressed, i am supposed to shampoo all carpets and rugs before he gets home and keep the bathroom and bedroom super clean and cloroxed... When we took the bone marrow class a couple months ago, i left the room very overwhelmed because of all the things they tell us to do and clean.. my parents' house is clean.. but with 5 adults in the house and all of us working, the thought of vacuuming everyday, bleeching the inside of the fridge every week, etc etc...and all that is just a lot... they suggest changing the sheets on the bed multiple times a week.. not letting Rex sleep in his bed... they even suggested de-clawing Rex but we are not doing that... (Chris didnt do it when he was a kitten and its a pretty cruel thing to do to him now that he isnt a baby especially) so we have to get his nails clipped atleast every 4 weeks... chris is discouraged from eating in restaurants for a few months atleast and therefore will be eating at home everyday.. which is fine but if mom isnt making something chris feels like eating, i will have to start cooking again too...i love to cook and i do.. but its just another adjustment post-transplant...

ok, back to the week...
basically over the last week (Monday through Friday) Chris has been doing good overall
He is breathing on his own and everyday the pulse oxygen number went up a bit. By this weekend, it was up to 99%.. which is great... I keep telling him to use his incentive spirometer because he should still exercise his lungs.. lately, he has actually been listening to me and using it..
they have added opium and anti-diareaha meds to his orders... all week he was having about 2 bowel movements a day. By Thursday, it seemed that it started to get a lil consistancy.. but by this weekend, he started going 3 times a day. i think today he actually had 4 (but the last one was very small) As of last evening he stopped eating. The doctor changed him over to NPO today (nothing by mouth) because they feel that maybe he should rest his stomach so that the meds can work without the stomach also trying to deal with food... so hopefully that works
in his words, he is "tired of crapping"
He is on 100mg of steroids a day to control the graft vs host. And, the steroids make his sugar go up, so we have the insulin for coverage too...
Physical Therapy came on Monday Tuesday and Wednesday. They didnt feel he was ready for walking yet, but did lots of exercises in bed and then in the chair..
Of course on Thursday physical therapy was off for the holiday but the good news was that we got Dr Strair back. He is on for the month of January.
We were lucky to have Dr Biren S (cant spell the last name) for December but Dr Strair has known him since Day 1 and just love him more than anyone else...
Ok, lets back up a bit...
Dr Park, the eye doctor had been checking on Chris here and there.. told him to see him when he gets discharged for a follow-up-- kept telling Chris that the blood clot in his eye is the same and wont get better until his treatment for the leukemia (the transplant) really finishes doing its thing...
Well, Chris wasnt that comfortable with all of that, so the normal eye doctor for the unit had been on vacation and came back this week.. Dr Anderson who practices in North Brunswick.. she looked like she came straight from the gym.. but we liked her a lot... Chris loved her actually
She explained things a lot better to Chris... basically when the counts are all messed up (low) during chemo and bone marrow transplant etc... bleeding can happen anywhere...just like there was a tiny bit of bleeding in his head a couple months ago (when they did a scan cus of his siezures) anyways... there was some bleeding in his eyes and it takes a while for it to disolve... in the eye, there is a gel and the clot is sitting in it.. unfortunately right in his line of vision...
Doctor said that he should stay inclined or upright because gravity will help the clot fall below his line of vision... otherwise she said regardless it will take 4-6 weeks to disolve.. and thats its pretty common in patients like him.. so we will be seeing her for a follow up..
I think she might even he in Dr Partridge's office complex (the plastic surgeon who did his finger tumor and leg biopsy).. Oh Dr Anderson also mentioned that she and Strair go way back.. apparently Strair's daughter had a crush on her son back in kindergarten or something.. hehehe.. she mentioned Dr Strair's wife is also a doctor. I knew Dr Strair had a daughter but i never was sure if he was married... atleast she understands why he isnt home a lot since she is also a doctor.. but yea... thats that...

Also, on New Years Eve (Wednesday) I went to see Chris and brought wine glasses. He promised me that he would be awake for the ball drop
Side Note: Chris has been very sleepy ... mostly understandable for anyone who goes thru chemo and transplant.. I read that most transplant patients dont get there energy levels back to normal for 6-12 months after the transplant . or more...
Plus the diareaha and lack of moving around and drugs.. he is naturally going to be sleepy
However, they are allowing him morphine for the pain in his knees...
His knees have been hurting him for a week now... Dr Strair examined him well and I wasnt there for that, but Chris told me Dr Strair feels that its not graft vs host or anything.. I naturally get nervous because of where his leukemia was originally.. but there arent bumps or anything.. AND he has pre-existing knee issues.. had surgery on one knee years ago.. he has those kind of joints that bother him with the change of whether... so I guess between the lack of movement and the pre-existing thing, they are bothering him.. but it stinks cus otherwise he wouldnt need pain meds... luckily its not dilaudid anymore... but the morphine makes him even more sleepy.. and that doesnt allow for him to move around.. its a tough balance...
I hear other patients (from hearing nurses talk and whatnot) getting pain meds (for various things i guess) but i know Chris is also pretty anxious.. possibly a little depressed...

I cannot imagine how he feels.. he has been in the hospital for a very long time... since October 20-ish, he has been here except for about 10 days in between). I cannot imagine being in a room (not hooked to IVs) for 1 day.. so 60 days+ plus has to suck... i dont blame him.. but he has been such a fighter and i notice he is having trouble staying awake or himself lately...
He says he wants to go home.. and I keep telling him that he cant until he is walking (which is true) but they say when his diareaha is better and he is ready to be discharged, they will send him to rehab if he isnt walking well enough... he says he wont go.. oh boy! So, I am hoping that he gets more motivated

As of today (Sunday) he knows Physical Therapy will be back for the whole full week and he says tomorrow is D DAY.. he swears he is going to work on this now.. so I am hoping... I dont want to even think about him coming home and not being able to get up the stairs again.. ahh

So, its 10:20pm and Chris hasnt gone to the bathroom (#2) in 7 hours... I am hoping and praying (as I am sure, so is he) that its gonna slow down now...
They also were telling him to drink prior to today so he doesnt get dehydrated but now that are telling him nothing by mouth except with drugs and maybe ice chips.. so thats another battle when he is better.. to make sure he drinks enough.. I read that dehydration is common for these patients and could be bad, obviously... so hopefully his stubbornness goes away when he is feeling better

Anyways, back to THursday, Dr Strair came in to do rounds in the morning.. we hadnt seem him in a while (since the day Chris was going to ICU and was acting really silly)... So Dr Strair walks in and says "So I hear you are on the up-swing" Wow, isnt that nice to hear from him.... Even though he doesnt do rounds every day like the other docs on duty, doesnt mean he doesnt hear about Chris every day. Strair is very active in his care and medicine decisions.. so he has heard about all of his progress, and issues and whatnot...
Anyways, Dr Strair turned around to look at me when he asked me if I had any questions and i noticed him looking at my shirt... When he was done answering my question, he asked me if I went to Loyola University Chicago (I was wearing that shirt) and I said Yes. He replied that his wife did her undergraduate there - and he asked if I was from there. He went on to say that i got a tough good Jesuit education. What a small world.. There are alumni all over the world but not a ton in NJ... Being that I am a loyal Loyola alum and a lover of Jesuit education, I am excited.. lol.. anyways.. enough about that...

Lets see.. my parents came to hang out with us for a few hours on New Years Eve... Chris had some rice pudding.. was eating a bit during the week.. and keeping it down.. but was battling some nausia... i guess he wont be eating again for a lil while but thats ok if it helps settle the GVHD in the belly

I slept at the hospital on New Years Eve and I also slept here on Friday night --
Dr Strair was off for the weekend and Dr Gharebo (totally spelling that wrong) - He had her in August. She is nice... and covered this weekend

Back to Strair tomorrow

I also learned more about the young 20 year old guy on the floor. He got discharged today. His mom ran into me in the lounge and she told me that he was next door at the Childrens Hospital prior to coming here (which i knew) She seemed to know that Chris and I were married (well, close- lol) but she sees me everyday.. so its a no brainer i guess... She said that he was in the hospital for about a year... 8 months of chemo treatments I guess.. I mentioned Chris was in ICU for a while and then dealing with GVHD now. she told me he had that too.. and that his diareaha was still hanging around, or it was soft i should say... but its nice to see people are dealing with the same as Chris (nice,as in normal, nice not as in pleasant)..
But the stunning part was that she told me he was home only about 2 months.. he relapsed and came back... they were able to do the transplant (I didnt find out why it was not done before.. maybe it was gonna be avoided if chemo worked.. or donor wasnt found.. dont know) but she said he was in ICU 6 or 7 times (I guess over at childrens hospital) and she said that because he was now 20 that he was able to have transplant here.. otherwise as a pediatric, you have to go to phily because they dont do pediatric transplants here... so that was a relief for them.. they live in freehold.. anyways, he had MENINGITIS at one point and almost died... can you imagine? thats quite an ICU complication.. thats why i hated when they sent Chris down there.. luckily all he ever caught was VRE... anyways.. i am sure i will be running into them across the street for follow-ups

We had Liz as a nurse a few days this week.. Valsa once... Tatiana yesterday and today.. Liz is my buddy cus she doesnt want to give him morphine.. she was the nurse who sat with him for a bit on the day he pulled out his triple lumen port. She saw him at his worst...
Valsa loves Chris so much "that she will do anything for him" lol.. love that.. but Chris doesnt know when he asked for his 6 mg of morphine she only gave him 4.... but he didnt know and it worked.... Tatiana is from Russia.. she is so sweet and takes good care of him...
I would LOVE to know why Chris hasnt had Nancy though... she was here a few times during the week and didnt get Chris... Luckily, Chris hasnt gotten the nurse he doesnt like... and hopefully will be home soon... But I almost feel like Chris isnt getting Nancy cus i asked for her... i dont know ... luckily except for not getting her, he has lucked out...
At night, Chris had Sophie and Nina this week... love them both...
Caroll asked about Chris today.. loved the Christmas card... she had a Danish Christmas (they put real candles on their real Christmas tree) its their tradition.. whole family comes.. do it every year.. firefighters' nightmare.. but she is nice..
Tanya has been off for a week! but i think she comes back tomorrow... even though Chris doesnt get her at all lately, i have someone to chat with when its a quiet night and I am here... I feel like a crazy woman... Chris is right outside the nurses station and i can see the board where they put nurse assignments so I watch as they assign and cheer (quietly) for certain nurses.. i know.. its sick.. but chris sleeps a lot.. i have nothing else to do!!
All the nurses have their tactics... Nina just comes over and inclines him and tells him to take his pills... it works.. he likes her too.. but other nurses just leave the pills and he wont take him unless you catch him when he is awake...
Sophie is a sweetie and like a mom.. so her motherly ways work with Chris too... just when you think he is sleeping he is listening and tells me about stuff...

Tomorrow Tatiana is not working so I wonder who he will have..lol... I probably wont get here by 7am tomorrow so i wont get to watch the board in the morning.. haha

Yesterday, Saturday, Jeanie and Liv came over to exchange Christmas gifts.. That was fun. hadnt seen Liv in a while... she melts my heart and wanted me to find Rex (cus he was hiding a lot when they were over)

For all of you who have called Chris in the last 2 weeks.. please do not feel offended that he hasnt picked up or called back.. he doesnt call me either...
I was shocked when I got a call a couple days ago when i was home.. and my cell died over night last night (which happens once every 6 months to me!) So, of course he called me at 5am and 7am and my phone was off.. awww... but its ok.. i reached him finally around noon before i went back to the hospital.. it took many calls for him to answer...

I know a lot of you have noticed his mailbox is full.. so tomorrow i am going to attempt to get him awake enough to dial in and listen to messages...

Some of you contacted me via cell, text, email, etc to ask whats been going on... so i know it was time to update the blog too... Ronnie, Aunt Ro, Gina, Ann Marie, etc etc i owe a lot of people calls and emails..

for those of you who read... Christine Rabbath brought me a great novel for Christmas and i stopped reading my Jane Green novel to start it.. i am addicted and halfway through in just 2 days... Its called LOST AND FOUND by Carolyn Parkhurst.. i totally recommend and thank christine for that one!

Sad the Eagles won today.. boo... Sad I go back to work tomorrow... but its ok.. once Chris is home i will have 7 or so 2008 vacation days to use in January that my boss was kind enough to let me carry over so I can take care of Chris and take him to appointments and stuff...

Chris's blood counts all look good.. where they are supposed to be... His blood pressure has been good.. sometimes low but ok.. low from morphine and lack of activity...
Chris perked up a little while ago when the new Dancing Show on NBC started... he heard it was coming up after the football game and actually knew of it and wanted to watch... so he stayed awake for over an hour.. he is sleeping now. Sophie gave him morphine but said he hadnt gotten it since 3pm... he is allowed to have it every 2 hours.. ugh.. so its good that he went 7 hours...

Chris told me the other day when I suggested he call his brother Lew back "I dont like the phone.. thats your job right now..." so i gave up.. i had been asking him to try to call me during the day atleast once when he is awake just to tell me he is ok... but thats the response i got...
So, Lew... I will call you soon.. or you can call me... but apparently he doesnt want to talk on the phone.. i know he mentioned that his arm hurts from holding it.. plus he cant see too clearly cus of his eye blood clot so its hard for him to see the right numbers and contacts to dial... i dont blame him... but hopefully when he gets more active with physical therapy this week, i hope he gets more motivated and happy

He also told me this week that he doesnt feel like himself... i can imagine why he feels that way.. but it seems to be bothering him.. i try to cheer him up and it works sometimes but i think he has fallen into a slump.. he is so ready to go home and done being in here... misses his bed and Rex and home and normalcy... i know it doesnt seem like he enjoys company now because he is so sleepy but i know when he feels better its going to help him recover... so i am hoping he gets moving soon

I am leaving the hospital soon.. he is sleeping anyways.. and i need to rest for work tomorrow.. plus i want to read a bit before bed...
I want to try to get here in the morning before work.. but regardless i will spend my lunch break here tomorrow.. i have to find time during the week to organize his mail and bills and also clean my bedroom floor and clean various parts of the house.. i feel like i just did it.. but it was last week and i need to be semi ready for his homecoming so that its not a total cleaning frenzy when they do discharge him

Oh, earlier this week, we got a package from Aunt Ro's coworkers.. they sent us Orieles tee shirts, Ravens hats, MLB and Army throws and Redskins and Ravens towels and a nice card... how sweet.. a care package... So, I am sorta rooting for the Ravens now..lol.. happy they beat the dolphins... i dont like the Steelers ... as for NFC, i am gonna root for the Giants.. i know.. i am cowboys fan.. but i like the giants.. so i will suck it up for a 2nd year... cardinals i suppose would be my backup nfc team.. i cant watch the superbowl and not have a team to root for... so we will see...

i think thats all i have to say right now...
this blog was supposed to be for me and Chris to write the events and stories.. but since I didnt start it til October .. Chris hasnt had any energy to write and likes that i am doing it.. but i am hoping he writes when he is better, about his recovery... nonetheless.. i cannot believe how much blogging has accumulated already... I suppose this will be a nice diary for us to look back at .. maybe i really should start writing a novel like i always said i wanted to... stay tuned for that one..

love ya all... xoxox
Jenn