Tuesday Jan 20th thru Fri Jan 30th

Tuesday morning I went to see Chris before work. He was sleepy and Liz was his nurse! yay! I mentioned that he should stay awake and watch the inauguration. I had little hope that he would...
I went to work... and watched 30 minutes of the inauguration from someone's office.
Then I went to see Chris. He was super happy and awake
He said it was a positive day! Turns out Liz spend a lot of the day in Chris's room and they watched inauguration coverage. Chris was pumped up and happy
Padma was his nurse at night. Hadnt had her in a while... Chris was happy...
I found out that they started pentastatin today. Its for 3 days.. So, he got it Tues, Wed, and Thurs evening. I ran into Dr Sedov when I got to the hospital and he filled me in. Its an immunosuppresent. Might bring his blood counts down. It is further suppressing his immune system to try to control the Graft Vs Host Disease (GVHD) - they dont want to wait any longer to try a new drug. His diarrhea wasnt slowing down. It can take 4-7 days for it to start working.
I cannot remember whether I gave him a ride in the wheelchair today.. I do not think I did .. but its been almost a week since i blogged...
I know Chris called his brother Lew tonight. Lew was getting married the next day, and he had tried to call Lew over the weekend, or a few days prior, and Lew told me he wasnt home... so Chris wanted to call Lew before he got married. They talked for a little while and that was that...
We chatted and watched some of the inaugural ball coverage. Chris was in a good mood.. and was falling asleep naturally from his day...
Oh, the psychiatrists were in during the day... They suggested Ativan (hahaha.. like he never had that before) and ambien for sleep... so they were gonna give that too him at night if he needs it...Padma is his nurse tonight... she takes good care of Chris and he likes her too...
He got sleepy and I went home to finish watching Obama and Michelle dancing

Wednesday Jan 21st... Chris had another good day...
I am blogging a week later so I cannot really remember too many details...
I cannot remember if his nurse was Valsa... bu I am pretty sure it is...
I am pretty certain that I came to visit during lunch.
My parents came to visit and were so happy to see Chris in such a good mood. He looks much better than he had been. AND he is talking and conversing so much more... He hadnt really had enough energy to talk too much for a couple weeks....
We might have taken another ride in the wheelchair.. I know we took a ride once during the week...
I know I stopped for Dunkin Donuts tea for Chris and I either tonight or maybe the next night... and I got a box of munchkins for the nurses.. I am addicted to Dunkin Donuts tea... yummo... anyways, chris can have it too -- I gave him a munchkin.. i felt so bad but he wanted it so bad and its only a lil munchkin.. he didnt seem any worse afterwards...
Jen (Chris's new sister in law) texted me to let me know that they were officially married. She also posted pics on her myspace. Jenn & Lew got married at the court house near the air force base that he is stationed at in Florida. It was small and casual. Jen's parents and some of their friends were in attendance. There are plans to have a party or reception down the road... hopefully by then Chris will be cleared to travel. He is not going to be able to fly for quite a while (year+) because of germs and whatnot. but once he can be away from home for a week, we can drive for our trips and vacations
We watched American Idol and I eventually went home to sleep

Thursday Jan 22nd. I told Chris that I would not be able to come during the work day today. We had an open house for interviews during the day ... I was not able to break away to come see him.
Chris actually talked to me on the phone today. I called him and he called me back. He told me he hadnt really gone to the bathroom very much. He sounded good... It was nice to be able to talk to him while I was at work. Its been a long time since he has been in the mood for phone calls...Chris told me that he had some new nurse who he never met before... Work was super busy with all our interviews.. but when it was all over, I went straight to the hospital to hang out with Chris...
I saw Tracy. I love her. She was on nights until a week or so ago...
She was one of the nurses who took care of Chris back when Chris was sent to Bone Marrow Unit in June. Nancy, Tracy, Vivian, Padma, Sophie and Liz were the nurses who were assigned to Chris back then. Tracy struck me as a sweetheart from Day 1. Anyhoo, I got to the hospital Thursday and she said hi.. we chatted a bit. She told me that Rose was his nurse. I was confused since Chris told me he never met his nurse before today.
Tracy is so cute. Seems so compassionate... very friendly... strikes me as someone who would be a great mom.. but i was pretty sure she had no kids...she seems kinda bummed about that
I talked to her a few nights prior and found out she is 35, single :( I would have sworn she is no older than me (29)... Apparently the unit clerk is constantly looking to hook her up.. I want to also... she deserves a nice cute boyfriend... so I am keeping my eyes open... if you know a successful cute single guy (I assume in central NJ; I assume in his 30s) keep her in mind... these nurses are like our family and I wish them all nothing but happiness...
Thank goodness I saw Tracy or i woulda been so confused.. She told me Karolina was his nurse in the morning... Rose didnt come in til 3pm or so. So Chris was NOT losing his mind!
Padma came on for the night... I went home after hanging with him all night.

Friday Jan 23rd, I worked all day and Rose was his nurse. When I got there after work, I was prepared to hang out and then go home to sleep... wake up early on Saturday to spend the whole day with Chris because I had our friend Eileen's birthday party to go to on Saturday night... My mom and I were to go to Eileen's surprise party saturday 7pm... which would mean I would have to leave the hospital on Saturday by 520pm to get home and get ready.. that was gonna leave chris alone for quite a long time ...and my dad was going to go keep Chris company at the hospital... My dad and mom had plans to go out on Friday night...
So, I was hanging at the hospital Friday night and my mom calls me after 8pm telling me that she got a call and that the party had been changed to Friday night and my mom was late. I guess they thought they told my mom... but i obviously couldnt get home and ready in time to make it to a party that had already started... So, my mom had to rush to get ready and go without me.. I dont know what my dad wound up doing... but i felt bad for my mom... I think I made her feel bad cus i mentioned that i didnt get to see the birthday card... and then I stayed even later at the hospital, because I no longer had to rush in the morning... but I was really bummed for 3 reasons.
1- I was really looking forward to a girls night out. My mom and I got a really nice gift for Eileen and I was excited to see her open it... I could use a night out.. and my mom's friend made a personalized card for Eileen that i hadnt even gotten to see (my mom talks about her cards all the time)...
2- Not only do I not get out often, but a close friend of mine, Shannon, also was having a surprise party the same night (Saturday) and I said no to the party because of Eileen's. I was bummed that I couldnt go to Shannon's and now it turns out, I could have. I have no luck. It was too late .. I was a bad girl and didnt remember to RSVP to Shannon's on time... by the time I RSVPd to her friend, i woulda felt like an idiot calling on the day-of saying i could come afterall.. anyone who knows me really well knows that i hate feeling like i am imposing or whatever.. and it would be totally out of my character to go to a party after saying i wasnt coming... plus i was invited with guest and would have liked to bring someone with me cus i dont really know anyone besides Shannon.. anyways..
3- I was making really fabulous appetizers for the party. And I bought brie and ordered special sourdough bread and my mom roasted a chicken (to make chicken salad) etc etc.. and now i had nothing to make these appys for... I was just bummed overall. i dont really eat brie cheese normally...

Now, back to the whole thing about me not getting out.. its no one's fault. My priority is Chris... I work all day.. so I WANT to see Chris after work... and he is alone all day.. pretty depressed about being stuck within the 4 walls of the room and that he is still there after 2 months... Since no one visits during the day, I want to keep him company whenever I can....
So, by the time I leave the hospital, its too late for my friends to hang out (usually)... My friends either have babies, go to sleep too early (even my brother is either in bed, or hanging with his girlfriend by the time I get home) And i dont get invited to that many parties (that i could plan for) so even though I am totally fine with not getting out much, i could really use a night out for a few drinks...
I always have intentions of pouring a glass of wine when i get home from the hospital (between 10pm and midnight usually during the week.. depending on chris's sleepiness) but then i fall asleep.. or decide to eat first if i am hungry and then dont want wine

Anyways, Friday night I hung out with chris and I cannot remember if we watched a movie or not.. but i went home around midnight and my mom had just gotten home from the party
Oh, Nicole (the really nice, very caring Wednesday/Friday head nurse) saw me on Friday. I had asked to talk to her or Mary Kate before they left for the day (I got there by 530 and they leave 8pm or later usually) also saw the doctor and he told me that the pentastatin takes 4-7 days to show that its working.. and its now day 4
So, we have to wait.. more waiting... he also told me that they put him back on morphine (they have him on the fentinol patch and had him on IV fentinol for breaththru pain). Chris had told the docs that that was not working so they put him back on morphine for breahthru
Anyways, Nicole comes to talk to me.. I asked her about 2 things
1- Most nurses will not give morphine close to chris's arm (close to the pic line)- Chris asks for it close to him.. and its because he likes to "feel" it... lately, he says he doesnt feel it. I know chris does have pain.. but i also am pretty certain that he also likes it because it helps him sleep or "feel good" and i know he feels like crap often.. but one or 2 nurses will give it to him close.. and one says "i will do anything for him" Well, thats great. I know chris likes her.. but it could drop his blood pressure.. and if its so bad for it to be done like that.. and thats the way its being explained to me, then i have a right to be disturbed that a couple will do it.. mostly because i dont need him getting an addiction any easier.. i dont think its fair to give him mixed stories on it.. and to give him a high when other nurses wont.. hopefully i am making sense to you...
Nicole explains that it is supposed to be given up higher and slowly.. but that if its given closer very slowly (over 2 minutes) and with saline, it is OK... well i am not totally happy but atleast it made me feel a little better. I really could have complained about the nurse cus i have other issues but i dont want to cause any more chaos...
2- The doctors put chris on a regular diet but only so that he can order toast and crackers. Well Chris isnt able to dial the phone really well on his own because of his eye... and only some nurses are proactive about his eating... or noticing what he can really eat. He should only be having broth and jello and juice and tea.. clear liquids, besides the toast and crackers... Well, during the day Friday, he didnt order lunch, so the default meal came and chris cheated and tried the macaroni and cheese! poor guy wanted it so bad.. and had belly cramps, but he has been having belly cramps for a day or 2 anyways.... but i asked nicole if they could put a note on his chart about his diet and having the nurse help him order... so she was cool about that.. she always helps..
Lastly, she said "oh, I gave you Sophie tonight.. i know you like her" She is awesome... We do love Sophie... And that meant we would have Sophie Fri, Sat, and Sunday.. woohoo! Anyone that night would have been fine because Tanya, Isabel, Sophie, and Kathy were on... but we are happy nonetheless ;)

Anyways, I went home late at night and then got to sleep a bit at home...

Saturday I woke up and took my time getting my day started... I called him and he told me he thought he was pooping...
I went to the hospital and Vivian was his nurse.. She told me he hadnt gone since this morning... I went in to the room and he told me it had been a false alarm.. was having gas.. thats good.. better to have gas than unstoppable diarrhea right?
Sorry to those of you who dont want to read about poop.. but this blog is based on Chris's leukemia, transplant, progress, complicatons, how it effects us, etc... and unfortunately right now, the poop is the only thing keeping him here... and if I am counting the hours between his poops and everyone else here is, its kinda the determining monumental occurances ... sorry
Chris and I had plans to go for a ride in the wheelchair later on around dinner time and watch a movie... Chris was having a good day. He had one small poop in the morning and none since.. just gas. I got a little excited thinking things are getting better...
Vivian also told us that if he orders white bread, that she can toast it in the nurse lounge.. wow! very nice... Chris hate the dining service toast cus its soggy and cold by the time he gets it... this is exciting news....
My parents came to visit between 230 and 530 or so... chris was in good spirits again... its a nice visit...
Then Vivian comes in and asks Chris if he knew they ordered a catscan of his bowels... NOPE we did not know... what a bummer.. Chris hadnt pooped in 14 hours PLUS overnight he only went once or twice... and now he had to drink the lovely bottle (or 2 bottles) or barium for the catscan.. that makes you poop normally.. ugh.. there goes the dry spell and seeing if he is getting better... and there goes the wheelchair ride...
Before things got crazy, he placed a phone call to brother Lew for his birthday.. the newlywed turned 22 today! No answer.. he musta been out partying...
He drank bottle one between 6 and 7pm and bottle 2 between 7 and 8pm
We put a movie on... Lady and the Tramp... and watched it... he pooped at 7pm after the drink.. and then again after 8... they took him to catscan at like 10pm
I waited til he got back and Sophie and I asked if he wanted toast.. he didnt... it was late.. I left .. it was probably close to midnight.. or later
He is in good hands with Sophie

Sunday... I woke up and went to Target on my way to the hospital.. I ran out of cashews and was craving them badly.. They are a staple in my poor diet these days... and I also bought 2 movies for me and chris... on DVD.. Enchanted and Open Season. Simple movies are good for us these days...
I have to take Jeanie's portable DVD player that she was going to throw out... we only have a VCR in the hospital room.. and chris can see better if the movie is more up-close...
I bought Superbowl napkins and plates and cups... I will bring them on Sunday for our hospital superbowl party... chris wont be able to see it as well as he would like but we will make the best of it...
I see Dr Strair at the hospital.. Vivian told me he wanted to see me and update me... he said he also didnt know about catscan so we would have to let all that barium get out of his system on sunday and re-look at his poop on monday and see if its getting better... he also said there was no final on the catscan, but that it looked fine... just inflammation (obviously, no surprise, because of all the diarrhea for a month+) I love seeing Strair.. he is perfect... he is direct, but compassionate, super intelligent, dedicated and without false hope, has a way of making me stay hopeful... he is the greatest doctor i will ever know...

Then, we got a surprise visit from Chris's dad, brother Tommy and Danny...
Chris was in the recliner... Vivian and Tracy got him to sit in it while I was still home... Chris seemed a little out of it, but was so excited to have a visit.
They brought more magazines for him to look at... he has to look at them slowly because of his eye, but something to pass the time and look at it...
His dad brought him a new bible, with bigger letters... which is great...
And, 2 M&M action figures.. so cute.. and a model car (Dodge Stealth i think)
They keep chris entertained.. its very good.... its nice to see them so often.. I know it makes chris happy... they stayed a few hours and were planning on making their routine trip to the Old Country Buffet in Edison.. they stop there often after visiting Chris..

Sophie comes on for the night. She makes him toast... he enjoys it immensely.. Sophie even toasted some italian babka sort of bread for him... she is so sweet... but he didnt like it.. so i got to eat it.. yummmmy! Shortly after, his tummy is aching so bad... the pepto, bentyl, gas x, opium, all dont help.. so eventually he gets morphine...
I go home to go to sleep... I wont see Sophie til the weekend

Monday comes and I go to work...
I visit Chris at lunch. Nazmin is his nurse. she told me he didnt want to eat.. but he did do physical therapy and occupational therapy
Chris is seeming depressed again... he doesnt have the tv on.. makes me so sad... he says "TV sucks" I dont know what to do for him because i know he cant see as well as he would like to so he cant enjoy tv or books...
I have to find something for him .. i dont know what...
They are having a baby shower for maryKate the head nurse.. she is prego.. due soon...
At lunch, I asked chris what the docs said and he said "same.." I asked if they talked about the poops.. he said she asked him about it and he told them it was the same.. I freaked.. i dont know why he doesnt tell them he has more gas.. and make sure she knows about catscan... ugh...
anyways, i go back to work and i decided to call Anne Tyno, the nurse practitioner.. She said she talked to Strair in the morning and she knew about it.. they would wait for the barium to get out and see how the poops are... she also noticed that chris was real sleepy in the morning and had different things to say when the doctor and her came back together later... it was good to talk to her...
Chaplain Sharon stopped in when I was there for lunch. She told us she would see Chris on tuesday but had a conference on wed and thursday...
I went back to work and came back afterwards
Jen was his nurse at night. I stayed until late .. we watched Fantasia.. and then it was bedtime

Tuesday January 27th.. I went to work... I know he had Nazmin again.. I called her during the day... my parents and I were going to be there after work. Nazmin said he was doing ok.. I planned to sleep over because snow was in the forecase for Tuesday night into Wednesday. and that way, if they snow was bad, i would be stuck there and not at home.. plus i would be closer to work..
But anyways, I got to the hospital around 530/6... when i walked in, Dr Sedov was doing a bone marrow biopsy... i was shocked.. i watched the end.. i saw him take out bone and they smeared some on glass slides...
He told me that Chris was just given morphine and ativan.. he was pretty out of it...
Dr Sedov explained they just wanted to check... his counts are low and they think its from all the immunosuppresants.. but want to make sure.. that scares the crap out of me.. I told him that his poop seemed a bit mushier the last 2 days.. he basically said it was still happening and although it wasnt getting worse.. it needs to stop... so they are going to watch for another day or 2 and then maybe add another drug...
My parents arrived and we talked while chris slept.. he woke up here and there but was out of it...
My parents left and i hung out.. he woke up.. we talked.. and i eventually went to bed.. he didnt even remember them doing the biopsy,, I tried to watch american idol, but the channel 5 blacked out 5 minutes into the show.. i was so mad...

Wedneday morning, i woke up and decided to work from the hospital,... although i couldnt get into work email.. vpn wasnt working from here... so annoying. so i did paperwork i had with me.. and then checked email from home wednesday night...
Rose was his nurse.. it was good to be there all day cus i got to see the doctors...
I knew we could possibly get preliminary bone marrow results today... if not, then tomorrow
his hip was bothering him.. it made me so nervous because bone marrow is made in the hip.. they thought it could be from the bone marrow biopsy.. but it was his other hip.. ahhhhh and more anxiety
he did physical therapy in the bed... hip hurt too much to get up... Rose was changing him in bed and was pressing on his hip.. he was in such pain... she was kinda rough with him after knowing it hurt the rest of the day.. ugh
Wedneday evening, Isabel was on! yay! I stayed til late at night... we watched Toy Story.. it was nice...
Oh .during the day, John the social worker came to see us... 2 weeks ago he talked to us and said he would look into help with long term disability. Chris thought he applied when he applied for state short term in the summer... Now, he came to tell us we should call a number.. and blah blah blah...
I did... I have a phone interview with social security for chris on the 13th of february... ugh.. so long.. but considering how long chris (we) waited to get this resolved... its ok... i could kick myself for not getting this started sooner.. but time flies..and when chris was supposed to work on it months ago, he would wind up back in hospital... and then i was busy and stressed and preoccupied and before you know it.. its so late.. and he is so broke...
We also had to pay his verizon bill today.. he was 2 months late.. i never paid his bills before.. he was usually well enough between treatments to take care of these things... i am getting worried cus he wont get income for another 3 months at this point and he doesnt have enough for all this bills.. especially when we have pharmacy bills ... i can help with those... but not all the rest
I got them to drop his cell phone plan down... he has a damn smart phone.. too much $$ now... plus he can barely use it.. i have to buy him a simple regular cell...
he signed me and my car up for some damn auto insurance in case something breaks.. and now i need to figure out if i can break the contract.. i dont think he realized he wouldnt have enough to pay for it.. and i wasnt aware of him signing up for it until after... craziness... how time flies and things get out of hand
John, the social worker, also told us that the Lymphoma and Leukemia Association(i think thats what its called) can help give ideas for fundraisers or planning a little.. I think i really need to look into this... it will be a lot of work but i think he deserves it and could really use the money....
So, maybe this weekend I will do some research...
Anyways, Isabel takes care of him.. and I go home
I catch up on the Bachelor.. i love that show
Oh, did I mention, American Idol blacked out AGAIn tonight? ugh
So, my mom calls me and tells me she thinks my dad is getting laid off on Thurs morning... my dad works for Anheuser Busch which is now Anheuser Busch InBev (blah)... he knew there was a possibility.. and it sounds like its happeneing tomorrrow morning.. boss asked him to come in at 6am.. he was supposed to be off on thursday to take care of a court thing for an accident from 4 years ago... ugh... when it rains it pours

Thursday, Jan 29th, I go to work.. Chris has Liz.. I went to see him at lunch... I was soooo nervous about the biopsy... so nervous... but they told me the doc thinks his hip is his muscle.. i felt it and yes, it was very tender... i offered bengay and he said ok.. and guess what?? It made him feel better.. yay! its not his bone
it was probably so easy for him to pull the muscle since he isnt walking and has to turn so much in bed for the nurses...
Chris seemed ok otherwise...
I was told the doc would be in around 3pm to give some results..
Luckily, I ran into Dr Sedov on my way out.. he told me the preliminaries looked clear... woohoo.. what a relief ...
I went back to work... and felt a little better
After work, my dad was there to see chris.. he brought pastina.. chris wanted to try some pasta.. plain... my dad was indeed laid off today... its bittersweet.. the company isnt going to be the same now that they have merged with InBev...poooey... but after 21 years.. it was very fast.. hopefully him and the guys from all these years will get together for a dinner or something... poor dad.. now my brother's friends will have to buy their own beer.. lol
My brother and his girlfriend heather came by.. chris wanted to meet her...
We all watched American Idol together
Chris was sleepy cus he was gettign red blood... but it was nice regardless
then i stayed til 11 or so... and said goodnight
Sophie was there.. apparently she was scheduled and didnt know.. bummer cus i thought she would be there friday and saturday and now i dont know who he wil get friday night

Oh, Thursday night, chris let me give him a pedicure... he needed it bad... dry gross feet... but he hates having them exposed cus he gets cold.. but i gave him a manicure during the week so now he is all good
His mustache is grown in.. starting to get hair back on head.. awwww
Liz got him to eat broth and the pastina and iced tea... so proud...

Ok... Friday i went to work.. didnt hear from him all day..
I got there after work and Liz said he had one poop all shift (12 hours) then he went again around 8pm.. but its now 1130pm and doing good
Isabel is on again.. she switched with Sophie cus sophie doesnt want to be home with her hubby for superbowl..lol.. so maybe we will get her tomorrow and sunday
i was gonna sleep here tonight cus i have Seans birthday party from 12-4 tomorrow.. but i just realized my registration expires tomorrow and i normally pay it online but i am not sure if i know where the paper is..otherwise i have to get to the DMV in the morning ugh
They also gave remicade again today.. it didnt work last month.. but they are trying it again
chris is ok.. we chatted tonight... he ate a little bit for Liz today and he had a Boost.. moving up in the world

Well. thats my novel for today...
I wish i didnt get so backed up.. but it seems ok for a day or 2 if nothing major happens.. then add in a few exhausting days and then bigger news and falling asleep at the laptop, and whammo.. its been over a week...

love ya all
Jenn