Saturday Update

Well....
I got to the hospital today ... I only went for an hour because I had Sean's 1st Birthday party from 12 to 4...
Last night, Chris had mentioned he wanted me to bring his laptop.. SO I did

Anyways, my parents were picking me up from the hospital on the way to the party...

I walk into Chris's room and he has a new nurse Lois...
She looked familiar... turns out she works across the street at the cancer institute... i think she came into the bone marrow class we went to in October.. she said yes...
Turns out she was a wonderful nurse to have because she worked here in the past and works per diem now once in a while... she knows so much so i actually got answers ...

Here is the point of the day.. when I walked in at 10:15.... chris had oxygen on his nose.. :( he had a fever 102.3 awwwww
The did blood cultures and took a chest x-ray. She had already cleaned him up 3 times.. but small amounts...
He was waiting for them to come get him and take him to xray his belly.. Just to check for progress or to make sure.. no emergency.. but want to make sure since he has the fever...
She had just given him ativan and morphine... he was out of it... talking silly... once in a while he made sense but it was so garbled
I was texting jeanie and he was telling me not to worry about it.. lol he didnt even realize it was not his phone... and then i told him to get better cus i missed him at home (i was crying a little and didnt want him to think i was too worried about his fever) and he said "we are gonna be fine..."
Then i cant remember exactly what i said about getting better but he replied "oh i know its gonna be a girl".. i asked what? and he said "our baby" awww it broke my heart.. but i wonder what he was thinking about.. our future? babies? and the poor guy is so miserable and sick... too bad its gonna cost $25000+ for fertility to use his stored "boys" and attempt getting pregnant...

Anyways.. i went to the party.. and i am so worried about him...

Funny thing is... a few days ago chris said something like "i wish they would just find something wrong.. but nothing that bad.. that maybe will make it easier to fix what is wrong... fix the diarrhea"
He is on so many immunosuppresents making it easy to catch bacteria.. but drugs that could maybe be causing some diarrhea... he definitely has Graft Vs Host BUT it could be slightly better (seemed to be getting better last weekend) and now its back to same old frequency.. could it be the pentastatin? i am not a doc but this is all so overwhelming..
anyways...
I went back after Sean's party... and his xray was over... temp was down to 100.3 or so
He had thrown up a couple times... he hadnt thrown up in a month... so it must be from whatever is going on in his body

Tonight, Sophie is back.. wooohooo
He spiked back to 102.6.. they gave him more tylennol and then some other med to bring down temp... Blood pressure is good.. the ativan is still not totally worn off... but he was telling me i needed to be his angel when he was shaking and really hot.. i gave him ice chips and he is sleeping nicely now.. i think

The blood cultures came back positive.. so he definitely has an infection.. they havent isolated which one yet though..
Xray wasnt completely read but if it was something bad it woulda been known by now...

Tomorrow is superbowl.. i hope he is more talkative tomorrow and i hope he has a better day..
I keep praying. .I feel so bad for him
Jolenta from the 5th floor stopped down this evening and we chatted... she told me how much she admired me for being around all the time..
She said she has seen countless people file for divorce after their wife was diagnosed... or cheat in their final days of hospice. .i was shocked.. thats why you get married for the right reasons.. how can anyone do that? thats awful... ugh...

anyways... so i will leave soon for home...so he can rest.. and hopefully tomorrow have a better day...
Prayers tonight.. as always

Hopefully the antibiotics that they started today will kick in and things wont be too tough tomorrow

Sophie told me tonight that the steroids he gets mask a fever often.. soooo he could have had something brewing for a few days and never spiked...
MAYBE.. my little prayer.. is that that is why he has not continued getting better after his diareaha seemed better last weekend... i am praying....
so...

love you all
enjoy the superbowl tomorrow
say a little prayer for my Chris...
xoxoxo Jenn

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

Weekend Update, Including Chris not wanting me to leave & Cruises Around the Hospital

Saturday morning... I woke up at home and went ot breakfast with my parents. They dropped me off at the hospital around 10:30am...
I got there and Chris was up... Dr. Strair had already been in -- Chris told me that Dr Strair told him they were changing some meds around for his tremors... I knew this the day before but I wasnt sure if there was anything brand new... and Chris was not sure either...
Valsa was his nurse and I told her I wanted to talk to Strair if he walked around again...
3 minutes later, Strair was in the room...
He gave me an update... Chris is back on Neurotin- should help with tremors. They took him off Cyclosporine, which I knew... replaced by an anti-rejection pill. Cool. They also added another pill to replace the blood pressure med that they had him on
Strair basically said they would see how the Remicade is working and add another graft vs host med before the end of the week if it doesnt work
He had to get to his rounds.. but I asked him if I could wheel him (in a wheelchair) around the halls and whatnot to get him out of the room. (I had asked head nurse Nicole this yesterday)
And he thought it was a great idea. Strair also mentioned that morphine was on the orders when he needs it.. but nothing else... sounds like Strair wants him to stay as un-medicated as possible... Ativan is on order for anxiety, which can also help with sleep

So, Valsa un-hooked Chris from the I-Vs and I took him out of the room. The nurses were like "take him down to the lobby for a while" Soooo me and Chris got on the elevator and sat by the fireplace in the 1st floor lobby... I wheeled him all the way down to the Childrens Hospital.. then down to the atrium.... we stopped on 5north to see his old friends up there... we saw Jolenta...
Then we had to get to the 4th floor for chris to take a bathroom break... but when he was done, he wanted to go back out for more cruising... yay! So, we rode around all around the halls and then we came back... he was tired. Oh, at one point, Chris's pumps were beeping. So we called the bell. The receptionist hear them and acknowledged them when we called. I saw no nurses at the desk. I was pretty sure a lot of them were eating in the lounge.. which is fine.. but someone is covering... patients still get care during nurse breaks... I literally pushed hold 8 times... Each push gets you 3 minutes. Chris called again ... we waited... finally the nurse comes in and starts saying "I cant give you morphine.. i already gave it to you.. blah blah blah" So I interupted and said "thats not why we called... his machine has been beeping" She looked sorry.. but why wasnt the correct info relayed? I feel bad cus when I am not there, that machine beeps and beeps and beeps.. even chris was vocalizing being annoyed...
So, I had my dad come pick me up around 3pm and chris napped. When I got back a few hours later (7pm or so) Chris was excited for another ride!
The tech (someone I never saw before) was cleaning him up and then told us his nurse said maybe we should do it tomorrow instead. Chris was bummed. He was looking forward to the riding ever since I left. Sophie came in - she was not his nurse :( I told her he was bummed. Nina was his nurse but when she came in she said he could go as long as he was back by 10pm... that gave us 2 hours.. woohoo... We love Nina too... Chris does very well with her... She has a way of getting him to take his drugs easily and listens to her... She is a sweetie...
So we went for another ride. We went back up to 5north and were lucky to see Mary and Ade... his 2 favorite night nurses on the 5th floor. We finally got back to the 4th floor and Chris was able to get to sleep much easier....
Ade came up to visit later but chris was asleep...
Even though the diarrhea had eased up during the day, he had a rough night :( I slept there and he was up often. Luckily, he was able to sleep for a few hours before the diarreaha acted up...
Again, at 8am Ade came to visit, but Chris was getting cleaned up
We even saw Vanessa and Dustin, 5north techs Saturday night and Chris was happy to see them

Now it was Sunday morning. It was Christine Rabbath's birthday. I told Chris the day before and Sunday morning, that I had plans with Christine, our moms, and Dana, to do lunch. And, Christine was going to help me organize all Chris's bills, paperwork, etc...
So, Sunday morning, Chris finally recovered a bit from his rough night. Strair came in to see us. He asked who from psychiatry had been in to see him already. Chris said no one. Strair said someone would be coming Monday. He agreed Chris needs to feel better mentally...
He said that the graft vs host is only in the GI tract. So thats their concern. (I was thinking, atleast its not in multiple places at this point)
He said that if it wasnt better by Monday, they would add the new drug...
He was excited to hear Chris was getting out in the hallls (he saw us up on the 5th floor yesterday) He said "see you out in the halls later then"
Oh...
Dana gave Chris a shirt. I brought it to him Saturday. It says "Colorado.. Hows your Aspen?"
Get it? Hows your ass been? funny?
Chris loved the shirt
So I showed it to Dr Strair on Sunday morning. He got a kick out of it too
He said it would be great for him to wear once he is out of the hospital
We showed the nurses the night before. they got a kick out of it too

So, Sunday Strair was done with him and Chris wanted to go for a ride before I left. I had to leave by 1030am to get home and showered. Then be back in the evening

So, Chris calls for help. While we were waiting, we decided to try it alone.. you know.. the long wait.... I only had an hour or so. Chris put his arms around me and he stood up and I helped him into the wheelchair. Rose came in and she disconnected him -- we went a ride... back to childrens hospital.. back to 5north,... back to 4th... around the hall in circles...
Then i brought him back to his room... I told the nurses he was ready to get out of the wheelchair...
Chris looks sad. I asked what was wrong. He said he was not ready to go back to his room
my heart was BREAKING.... I wanted to cry... A few days ago he was kicking me out.. now he was loving the rides so much.... so Paula came in to help with wheelchair... but I mentioned to her that he was sad and she offered to take him for a ride.. i thought he was going to leap for joy.. he was like "lets go" so that made me feel better as I was leaving
This is exactly what I fear. I leave every weekend to do my things at home.. and he is usually like ok, whatever... but when he is like this, i feel so bad....
its not like the nurses have time to just be wheeling him around...
It is motivating him to keep up with physical therapy.. when we walk around, he says "walking next" or when we pass by the doors to outside he says "they will be my doors soon" Poor guy.. cant even imagine what he feels like.... but i am happy i can take him downstairs...
Anyways, I feel terrible that he doesnt want me to leave. It would have been a great time to have a visitor who coulda wheeled him around. A few weeks ago, visitors would watch him sleep or get very little conversation time... now he can be more interactive...

I had a great lunch with the Rabbath women and babies. Then Christine was a tremendous help with the paperwork. Ben & Sean are so cute. Ben loved his presents (we finally did Christmas presents) and then I went back to the hospital
I called rose on my way -- he was unhooked when I got back
So, we did a 2 hour ride again Sunday night.
I brought him Dunkin Donuts tea (he cant have coffee right now) and we had a date with tea as we rode around... the nurses were excited to see him in the halls... Carroll hadnt seen him in a couple days.. and Jen..
Oh, the night before, Sophie gave him chocolate, orange jelly, Polish candy.. shhh... didnt seem to do any damage.. but its clearly not a clear fluid... he was loving it...
So anyways, last night, Sunday night, after our long walk and stuff, he was tired... so we got him in bed and Nina was his nurse again... we had a good night... he fell asleep.. I slept over...
He only needed to go 2 times overnight...
This morning, we woke up and Karen is his nurse.
She wanted him to get up into the chair so early... intentions are good. but i know he wasnt ready... he wanted to get in the wheelchair and ride but not til the doctors did rounds so he could be done with that.. but she talked him into getting up into wheelchair.. then we waited and Chris was getting frustrated cus he wanted to be disconnected and go... Karen didnt realize that... Dr Strair had today off (i guess for holiday) so Dr Gahribo was seeing him.. but Strair was in the halls all day.. weird.. that man never gets a break... God Bless him

So, Gharibo sees him and is happy to see him in a wheelchair.. she says they will monitor bowel movements one more day before deciding.. also the psychiatrist is not coming (holiday...) bullshit... chris really wants to see him...
so tuesday supposedly.. i have been hearing "word" of this for a week... i think tomorrow it will really happen though

So Karen unhooks him and we are off... I am feeling very tense... he really needs to get out of the room.. he enjoys it.. its good for him mentally.. and i run into an obstacle after a breeze.. after an ostacle...annoying.. i think i come off as snotty but i dont care.... i dont know what to do

So, we get back from our walk. We saw Sharon. Chris initially was going to go into the recliner but was wiped from the walk.. so he wanted bed... Karen and Jen come in to help move him... and were talking about him going to chair... he isnt saying anything.. so I had to ask him if he wanted to say anything... he was JUST arguing with me and insisting he was too tired to sit up any more.. so I feel like the bad guy or the bitch for making him talk.. but i could tell he was uncomfortable... If i felt he was being lazy or silly i would keep my mouth shut

So, he rests briefly and agrees to eat some lunch
I go to warm up his tea and broth... and the toast he is now allowed to have... and they tell me physical therapy is here for him... its noon.. he JUST laid down after being up and about.. i am fuming internally... She comes in the room as I am giving chris his lunch and nurse says maybe do therapy first.. i want to scream... he needs to eat... first time all day... and he needs to get a break.. and what happened to PT being around 1:30 everyday? how can he plan? He is supposed to do his own getting around when they arent there... ya know?
So, PT notices lunch and she says she will be back in 15 minutes...
whew... So I told Chris he needs to speak up.. I feel like I look like the blocker or the bitch for opening my mouth and he told me he would and stuff... he also told me to go rattle some chains...lol.. he was annoyed about the inconsistancies
So... I saw the outcomes manager nurse Elena and spoke with her.. and PT...
Chris did physical therapy and I watched... She asked me to follow him with the wheelchair as they held him up with chris holding the walker... I was confused.. there was NO room behind him for the wheelchair.. and why??? arent they supposed to make sure he doesnt fall? ugh
So, i am looking at the foot rests on the wheelchair and i am thinking.. if he starts falling.. the wheelchair isnt going to catch him.. his butt will never make it to the seat... but i shut up
He takes a few steps slowly.. i am proud.. but it sucks how hard it is for him
Therapist told me he was able to walk a bunch more steps than that last week but its ok, meds and stuff cause weakness to fluctuate during the progress
So... he gets weak and is falling... i had to fight to get chair behind him.. "told u so"
Anyways... before falling into chair,, he was getting dizzy... she told him his body is not used to being in that position... so she asked if he could do leg exercises and he did... the dizziness slowly went away
She didnt stay too long.. asked him to sit in wheelchair for a while.. mentioned sitting there for an hour and having lunch in the chair.. ummm he just ate duh...
anyways.. i sat hext to him until he was ready for bed...
He finally dozed off and the rehab doctor came.. DO WE HAVE TO WAKE HIM UP? are you that important? i mean, he isnt going to rehab that soon...
so he is alarmed at being woken up...
Then Occupational Therapy came and he was just beat...
He had more diarrhea... so i guess we will see how the night goes and they will make a decision about new drug tomorrow
ugh... I feel so bad for him
Chris started to freak out a little bit and i calmed him down...
Isabel is back tonight.. love her
He is sleeping now..
I am gonna get going.. I have been here for 27 hours... time for home.. time for dinner and Rex and shower....
I pray her has a good night... maybe we will get a miracle and his diarrhea will stop tonight and tomorrow will be better.. new president new health? I hope...

Tonight he said "come here and make me not freak out" so i did.. gave him the pep talk... i begged him to sit up whenever he can and take deep breaths.. reminded him how high risk he is for stuff and pray he continues to be motivated... ugh... i told him to occupy himself more during day so that he sleeps easier at night..
but i just want the Graft Vs Host to settle down

He said something funny to me earlier...
He was saying how perfect i am.. something about having me in his life now and whatever.. anyways.. i wish i could quote it.. but he said something about perfect cheesiness... and said it was like something perfect and then adding cheese and melting it and it being so yummy and good..lol.. he said it was a food metaphor.. very cute.. but funny...
Oh, and Olivia is a child prodigy.. she plays the piano like a champ... girl is going to juliard one day... jeanie sent me a video of her playing piano yesterday and chris and i were both super impressed

Well, tomorrow is inauguration. i hope i can see it somewhere at work... not sure if i will get out to see chris at lunch.. so i am gonna try to see him in the morning before work...
I will pray extra hard tonight... there are a lot of people who need it... Jeanie's friends & everyone...

love you all
jenn

Friday... quick update

I went to work this morning.. Chris never called me back last night or during the night... so I assumed he got to sleep...
I called the nurse station in the morning to see how his night was and who his nurse was during the day today
Nicole, the Wed/Fri head nurse, who I love, spoke to me...
She said they would be sending in a psychiatrist soon to talk to him... he is clearly depressed and they want to see if they can manage it...
They are also sending in neurologists for the tremors...
Rose is his nurse today & I also talked to her... the morning was quiet. He only had 1 or 2 bowel movements but he also had them overnight
Nicole told me that they got him to sleep last night .. whatever drug they gave him worked
I am now learning that the did NOT put him on a new GVHD drug yesterday, even thats what i was told yesterday when I asked... what they gave him yesterday was a replacement for the cyclosporine... I keep getting told they are thinking of doing this.. they might do that.. blah blah blah.. and then when they add a drug, I ask for clarification and I cant even get the correct info

Rose told me someone else wanted to talk to me and she put Sharon on the phone... She had checked on Chris and he was sleeping.. she told me that she had seen all the doctors in there yesterday and Anne.. which I was aware of... but I dont understand why the nurse cant give me a reason why he is on a drug if its pretty simple...
I asked Sharon if she had heard about whether he was 100% the donor or not, and she said she heard Nancy saying that yesterday. It sounds like Dr Sedov was near her because he told her that that was not back yet. no final on the bone marrow biopsy yet. Sharon relayed that to me.. so now we are still waiting for that

The new drug is the drug he would have been sent home on (Cyclosporine is IV at the hospital.. they are sent home on an immunosuppressant... so thats not a huge deal... ) they made the change now because the cyclosporine might have been causing his recent tremors...

They also stopped the cymbalta a couple days ago because that also might have been causing tremors..
I got here after work by 530pm..... and found out that even though Nancy mentioned a new psychotic drug yesterday, he is indeed not on anything yet... they want to see how all the changes in meds work before adding yet another drug.... I understand.. it seems the tremors were putting him over the edge the last 2 days.. so if they can control those, he might not need any anti-depressant..
They added Neurotin (which he has taken before)--- should help the tremors since they are a neurological thing... and they changed his blood pressure med... he was only on it to slow down the heart rate since it was high during pre-transplant chemo.... but they changed it to a new one which could help with tremors...

He got a 3rd dose of remicade today (that weekly one that is for graft vd host.. to try to stop the diarrhea from the graft vs host in his GI tract)... So it looked like what Anne said Wednesday is what they are doing... waiting to see how this 3rd dose works before adding another graft vs host med...
Its frustrating because the nurses mentioned drug "such and such" and i cant keep track of them all.. so when they mentioned "oh i hear they might give him this" or "oh they are going to add another graft vs host drug sooner" and then i ask if it happens, i cant remember the name of the drug that was thrown at me.. and it sounds like there is also another anti-diarrhea med that is out there too.. so i am not sure why they are waiting.. but i guess thats good if they arent urgently adding more drugs...

Chris was in good spirits when I got here after work. He told em Dr Strair gave him a reality check and told him basically that he could stop treatment, give him dilaudid to make him zonked and sleep.. and let him die.... OR we could continue with the treatment to figure out the graft vs host and work on getting him better. Chris seems to have things back in perspective and chose to try that living route. Good...
I asked Rose if he had a lot of bowel movements and she said yes. She said it was watery and a lot... She wasnt his nurse for 2+ weeks so I have no idea what that means in comparison to the last few days... I didnt get very far with asking her for that info.. So Nicole looked up the day for me and said she saw 2 bowel movements at 11 and 12. Rose might not have charted the others after that, if there were more... but i think he had one around 730am when the shift was changing... its very frustrating because i dont know if they are remembering to chart them all even though the supposedly are.. and i cant get a clear answer on the amounts and better vs. worse because some nurses dont take care of him as often as others so i cannot gage.. ugh frustrating.. Liz & Nancy are back on Monday )off for the weekend

He was up for an hour talking to me and then started to dose. Which is good... Sleeping without suffering from discomfort is good
He also had a good day with physical thereapy.. they said they were impressed with his progress and he (with help) took some steps to the chair.. and they worked him out...
Yay!

I also suggested to Nicole that it might help his depression to get him out of the room even if he isnt walking.. maybe in a wheelchair around the halls.. she thought it was a good idea...
She said maybe Strair would let him go down to the lobby and sit by the fireplace for a while
So, I ran it by Chris and he seems happy about the idea.. maybe getting out of the confines of the 4 walls will help him a lot...
Too bad no one else thought of this.. they all do know he is going stir crazy from being in the room for over 2 months... Maybe I should be a shrink or therapist... sometimes i just dont understand why they dont take action quicker since they are much more experienced with people who are stuck in the hospital like him... I dont have time to think of solutions when I am busy working and running around and worrying about his health... ugh

anyways... he is sleeping now.. i am not sure how long i will stay.. i am relaxing with a book and my laptop.. and he is "ok" and sleeping... but i want to get here early tomorrow to try to see Dr Strair...

thats about it... his vitals are all good.. blood pressure good.. temp is 97.4... pulse ox is good.. he is sleeping soundly... very nice...

talk to you all later
xoxox jenn

3 day update. Chris tells me to go home so we can both sleep.. but called me at 1130pm very sad :(

OK...

So I went to the hospital Monday during my lunch. Chris tells me that the doc is talking about rehab before he goes home... physical therapy people came and evaluated him...

They feel he needs to be a lot stronger before he is home.. they want to make sure he is walking around before he goes home so he isnt in bed all day..

Makes sense

However, I am confused because he is supposed to be in such a sterile environment.. how can they just put him in rehab?

Well, anyways, I decide I will ask all those questions later...

After work, Chris was up and feeling good... We hung out until late at night and things were looking good.. he told me he wanted to help me go through all the mail and bills that have piled up and that we would go thru them after work tuesday... So i mentioned maybe sleeping there tuesday night... he was down with that..

But listen to this... Physical therapy never came Monday at all... now i am mad... how can you say he needs it so bad. needs rehab.. and skip him on monday.. bullshit

Karen, his nurse from Sun/Mon says she will mention to Mary Kate...

So, now i need to sleep there tuesday night .....I also wanted to be able to catch the doc in the next morning and ask more about whats going on and timeline and all that...

So, Tuesday comes.. I called Chris in the morning and he was feeling good... he had a good night... no bowel movements monday night.. so it was only 2 in 24 hours...

I told him i was running late and would see him at lunch and then sleep there like we discussed...

He sounded great...

I got there at lunch and Mary Kate sees me and tells me that she talked to Elena, the case manager nurse, and that they are working on making sure physical therapy is never skipped again.. whew.. finally

Chris is cool.. says that the therapist came to see him and would be back at 130.. i was gonna leave to go back to work by 115...

he is in a good mood... I went back to work

After work, i ran home to shower and grab clothes for overnight and for wednesday work.

I get to the hospital.. my brother had visited and told me chris was having bad tremors :(
He is obviously not wanting to go thru bills or much of anything...
He falls asleep and I read and eventually went to bed
Overnight, he had a few bowel movements ;( ugh
He is not happy in the morning because he didnt sleep well and because he has the tremors

Wednesday before leaving for work, I saw John the social worker and Elena... John told us he would work on seeing if they could help expedite Chris's long term disability application... he desperately needs that... and Elena worked out physical therapy consistancy
I went to work

After work Wednesday, I went to see him
Karen the nurse tells me he has 4 bowel movements and some blood in them :(
This means there is bleeding somewhere in his GI tract... but they tested for clotting factor and he is ok
There is talk of a new Graft Vs Host drug
They stopped the cyclosporine and the cymbalta (both could be causing tremors)
Chris was feeling sleepy so I went home by 930pm...

Thursday morning I wake up (today) and there was snow on the ground and it is still snowing
I called Chris and he answered. I was driving to work and it was taking me forever. I said i was just gonna go to work since the roads were bad...
Nancy is his nurse ;)
I talked to Nancy during the day and he only had a lil blood today and they would be starting a new graft vs host drug... and a new psychotic drug :( ugh.. but he is obviously depressed right now.... he wants to feel better.. he wants to go home
He did do physical therapy.. so thats good

I went to see him after work today and my parents were also on their way to visit
He told me when I got there (in a groggy voice) "you should just go home and sleep.. Dr Strair gave me a reprieve" i was confused so I went to talk to Nancy..
She told me he just wanted a break.. wants to sleep... ugh
So, Strair said ok.. let him have benedryl and ativan... so he chatted with my parent for maybe 10 minutes and told us to go home... i was sad cus i dont get to see him all day.. but its ok... i just wish i could be there to hug him whenever he wakes.. so its very hard.. i need sleep too.. but he's been down lately and he asks for hugs often.. i know he wants them... awwww
Ativan is making him a bit loopy but as long as he sleeps

Nancy told me that they will reevaluate.. but he needs an immunosuppresant... so cyclosporine either needs to go back on or be replaced
I think he had 3 bowel movements for nancy all day
Nancy also said someone told her today that he is 100% the donor, but she cannot remember who... so now i need to ask to make sure that is correct

Anywyas, Chris asks for a hug.. my parents leave.. i leave...
I just want the diarreha to stop... and of cours,e the blood in there too ;(
poor chris...

So, its 11:30pm tonight and Chris calls my cell phone... he is telling me to call Dr Strair... he is practically begging me.. saying he needs to be able to sleep.. he is laying in poop (had an accident) and i hear his machines beeping.. I asked if he called the bell and he said yes...
I am so scared.. i feel so bad for him.. he is telling me he needs help
I ask him to hang in there.. tell him i love him... tell him we are almost there.. remind him i am proud of him and that he told me to go home... i dont feel guilty but i feel so naturally bad that i am not there..
he tells me he is trying .. he still wants me to call Strair...
I called the nurses from the other phone and Tracy tells me that the fellow, Dr Lee was in there 15 minutes ago and that they are getting a new drug from pharmacy to help him sleep...
she is going in now.. and she tells me they just had an emergency on the floor...
I really wish they would have 5 nurses at night instead of 4... it would help so much

I go back to Chris and he is telling me he cannot move... i am trying to ask him what part of his body and he isnt answering me.. he is just talking in general.. ativan makes you sleepy and out of it... so he is awake but not totally
I had him on the phone for 12 minutes and then i was saying (as I heard him telling tracey he was on the phone with me) "Jenn let me call you back"
Its been 45 minutes since we hung up so I am hoping he is sleeping and that is why he hasnt called...
poor guy...
I pray this diarrhea stops so he can feel better...
Graft vs Host is so scary
the new med says its also used to prevent rejection with kidney transplants
I want him to be better and go to rehab and focus on getting his strength back.. I feel so bad for Chris... getting rid of this diarhea will make him feel more normal and more like he is gonna get out soon....
Hearing from him tonight broke my heart... He seems to be with me.. he is telling me he is hanging in there.. but acknowledging that its very hard for him right now... he is still fighting but its so hard

please say a prayer for him...

Jeanie & Brian's friends lost their little boy (6 yrs old) today... he died suddenly and they need our prayers too... its a reminder that we dont have total control over our own lives and they wont get over this ever...
Since so many of you pray for us, for Chris, I ask you to remember his family today....

Love you all
Jenn

Results & Weekend Update

Yes.. I know... I said I would update with results on Friday... However... we did not get final final results so they were still preliminary... plus Friday night, the internet at Robert Wood Johnson was not letting me connect.... so when I got home Friday night it was midnight and I was too tired to post... and here we are-- its Sunday evening and I am finally updating

I got calls & texts & emails from lots of you checking on the results... thanks everyone for your check-ins ;)

Ok, So... where i left off... I went home Thursday night and was up half the night anxious about the bone marrow biopsy results...
I raced to the hospital Friday morning and Chris is semi-awake... he tells me "status quo" (his favorite phrase) -- that there are no results yet... I think he insinuated that he saw doctors... but I walked outside and see Dr Sadov (fave fellow) & Liz the nurse and they do not think Dr Strair has been there yet.. hmmmmm
So.. I went back in to see Chris and he confirms he hasnt even seen the doc yet... so I wait...
Shortly after, I see Dr Strair strolling around in the hallway.. looking happy, as he usually does...
not too long later, Dr Strair walks in with Liz. Dr Strair tells me and Chris that the bone marrow looks good... YAYYYY! He said its still preliminary but that there is no evidence of leukemia and that they are still waiting for the final... Should have by 4pm. He says that his bones must be strong because the sample from the biopsy has still not disolved (I do not know if that is a total joke or not... not sure if stronger bones would really take longer to dissolve)
Anyways, he seems happy... and he tells us he will be back doing rounds in 10 minutes...
My anxiety has drastically gone down and I can go to work feeling a little better...

There are so many steps in this process.. and there are still lots more scans & more bone marrow biopsies to make sure the donor marrow continues to take over & all that... and make sure those few areas where he had leukemia are all gone (bumps seem to be gone that were once on his legs & belly.. but i think there was still a spot on the spine on the last petscan before transplant-- remember that was an original spot when he was diagnosed...) but.... every step in the right direction is a good thing....

Anyways, Liz came back in the room on Friday morning to tell me that she had asked Dr Strair to come talk to me before I went to work. She told him something like "please go talk to her so the poor girl can go to work and not have stomach aches & anxiety" LOL Love Liz.. she is awesome... It worked cus Dr Strair came in... I am sure he would have come in with a simple request that i had to go to work.. but when Dr Strair looks happy, I am happy...
Anyways, they gave him that 2nd dose of remicade on that day as well... hoping the diarreaha starts to get better...

The funny thing is that while I was stressing for 2 days waiting for results.. Chris appeared to not even be thinking about the biopsy results. Strair gave us good news and Chris barely perked up... Back in mid November when Chris found out the bone marrow was clear after that last chemo, he WAS worried about the results.. but this time, he told me he wasnt really thinking about it... I guess its like being a mom when your baby doesnt know to worry about his or her temperature or well being... I did all the worrying.. so its ok.. his job is to recovery and I can do the worrying... Of course, unlike a baby, Chris is aware of whats going on.. he is just too tired and focused on sleep and GVHD right now to be thinking about everything...

As I was getting ready to leave for work, the nursing director came to see me... I had mentioned to Anne, the nurse practitioner, the other day that there was one night nurse who i feel Chris isnt fond of... since he was pretty emotional earlier in the week and still... so she told me to talk to Molly the director.. I didnt want to make a big deal, so I told Nicole, the head nurse on Wednesdays and Fridays... She was totally understanding about it and said she would take care of it.. she agreed that she wasnt warm and fuzzy and that chris needs warm and fuzzy right now.. she loves Chris.. she said "anything for you" to me... Thats how a head nurse should be.. thats how Kachi is on 5 North... Anyways, that was wednesday, and on Friday morning, anne asked if i talked to molly.. i was happy that she was remembering my concern, but i didnt want to make a big deal.. but because anne remembered, i walked down to see if molly was in.. She wasnt but Nancy saw me down there so she said she could page her.. i said it was ok, but she paged her. Anyways, she came to see me.. and i said bye to chris and talked to her in the lounger. she was also super understanding and said she would do that for us during the week but that it would be hard to guarentee over the weekend.. but nicole would assign someone for friday night and most likely get same nurse all weekend... mission accomplished... Molly was really sweet and understanding... too bad i didnt meet her back when he got admitted cus i coulda probably resolved a lot back then.. but its ok

So.. I go to work... and I told Chris I would try to get back by 4pm (leave work an hour early) to see if there are final results and he seems happy about that...
Work was busy as hell.. I got sooo much done... Worked on a bunch of job fair flyers and postings.. sorted thru a ton of college resumes, boxed up a bunch of old files... I got more done on a day when I left early than i usually would... but i know my upcoming week will be busy..

Anyways... I went back to the hospital at 4pm and Dr Sadov came in and told us that there was still no final final (cus they have to match all the other stuff to the donor) but that all the tests on the biopsy were clear.. no leukemia.. YAY! Chris is happy now..
When I got to the hospital, Chris was actually awake and looking at me when I walked in.. I got a "hello" which is new... for weeks he has been so quiet, for different reasons..
From Dec 21st or so until Christmas (ICU time) he was out with dilaudid and breathing problems.. Then he was recovering and unhappy about the GVHD and diarrhea and then the depression hit...
Now, because he is feeling a little better, diarreaha getting a little better everyday, good news, and probably the cymbolta is helping, he is now talking to me way more than he has been and asking for hugs... It is so nice to see this positive change in him... And I do not think you can totally understand how this feels unless your boyfriend/husband/significant other stops being themself for so many weeks... its heartaching to watch and then when they are getting back to themself, its such a relief...
Chris tells me he didnt see Sharon today (Friday). I assumed he was asleep when she came by.... Later on, I got an email from Sharon and she said that was the case...
poor chris... he sleeps thru so much... maybe he needs a wake up call 10 minutes before visitors.... hopefully he is more awake this coming week and will be more aware of visitors...

One of his biggest complaints is restlessness... He is so tired of the bed and whatnot, and now that his strength is getting better little by little, he is moving around in the bed "trying to find comfortable positions" So, for a few hours, he sits up, sometimes with my help, re-positions, flips over, tubes get occluded, machines beep, nurse helps boost him, its a lovely cycle...
Its terrible that he cannot get comfy.. but as the loved one, I am excited that that is his complaint now... he has some pain in the knees but its not screaming.. he gets morphine a few times a day to help, but mostly, it ultimately helps knock him out for the night when the Xanex and other anti-nausia drugs are not enough or wear off...
His eye is still annoying him but he admits it has gotten a little bit better

Friday afternoon, since Chris is up and more talkative, I suggest that he attempt to make a phone call. A few people have left him messages and he hasnt used the phone in weeks (other than to call me twice)
He agrees and calls his dad. They talked for a while... and then he is tired from holding the phone
His plan was to call Lew next but he says "later" cus he is tired...

I stay until late at night.. midnight or so...
I am happy because I see that his diarrhea is slowing down..
they are talking about possibly starting him on clear fluids..
Chris is telling me that he is actually starting to feel hungry.. a good sign I think

Snow is in the forecast for Saturday. Its already flurrying on Friday night... I feel the snow in the air
Saturday morning, Rex has an appointment to get his nails trimmed. They are too long and when Chris comes home, I have to keep them super short, diligently, for a few months...
They actually strongly recommend de-clawing but we are not doing that..
Sorry.. i think i might have mentioned this in a previous post
anyways, my brothe wakes up to help me get Rex in his bag (carrying case) because Rex hates it... and I am too scared to grab him by the scruff. So, my dad drives and mom comes too... Rex meows the entire way to the vet... The vet is in Princeton. Chris loves it there.. the Carnagie Cat Clinic, downstairs from the Princeton Animal Hospital.. and my parents wanted to go to the Dutch Market in Princeton anyways...

We get back home and Rex tries to cling onto the carpet on the side of the stairs (he likes climbing rather than walking up the stairs) and he cannot get a good grip (oops, sorry Rex)

The snow has started and my mom takes a ride with me to the hospital.. Chris is up and talking and mom stays for a few hours until dad picks her up...
Valsa is his nurse... she loves Chris... she told me that they were doing a blood culture .. i couldnt understand her explanation... so i asked Dr Gherebo.. she said he was sweating in the morning (he has been here and there for weeks) and had 99.8 so they were just being proactive. ok it makes sense.. although his counts are all good, he IS immunosuppresed from the anti-rejection drugs and from having a new immune system and graft vs host.. he is still comprimised and more easily can get an infection... Valsa gave Chris his morphine when he asked for it but was pretty awake for me and mom... She tells chris how well he is doing and teases him with the thought that he could be home by Friday..
Personally, i think not. i think 8-10 days not 6... but its ok.. i talk to chris about it later and he is content with being here until he is ready to go home.. i think he has given this all some thought and is more on the same page now with what is going on

Chris is all about the hugs and re-adusting in the bed... my back might get really out of whack from all this moving him around, but i am ecstatic that he is feeling more like himself...

Mom leaves... Me and Chris have a great day... he is happy and motivated to walk..
Sophie takes over as the night nurse Friday night through Sunday night, after 3 nights with Jen
We love Sophie... love love love her... she is so good to Chris and she also gets him to respond well... he smirks once in a while even when he is sleepy and doesnt want to sit up for drugs...

Oh, Friday night, I was supposed to meet up with Christine Rapach and her boyfriend and friends for his birthday... i was gonna get there late after Chris went to sleep but Chris was awake so late that i got delayed and eventually did not go to the bar.. I thought about it afterwards and realized i do need a night with some drinks but i was driving.. that was a bad idea... but also on Friday night, Sophie told me that when the nurse shift change happened, at 730pm, an old patient's wife and daughter came to visit. she had written a book about her husband's battle with cancer.. and brought 2 copies of the book
She showed it to me and said to look at it if i wanted to...
I, being a glutton for punishment, did look at it.. and read it... yea.. the whole thing...
She told me that the husband died, but not to tell Chris...
Well, I started reading it and saw that their anniversary was the same date as mine and Chris's (except they met in 1989) They were 18. That freaked me out. But i kept reading and it seemed that this guy was diagnosed with Lymes Disease and went to an arthritis doc for 9 months or so, getting pain killers for joint and belly pains... he had many many nights of pain and fevers... I question why they didnt get scans done sooner or why severe fevers and pain wasnt questioned more.. but anyways... when they finally admitted him and did tests, he was stage 4 and cancer was in his lungs, kidneys and liver.. the diagnosis was Lymphoblasic Lymphoma.. and its a form of Non Hodgkins.. an aggressive one...
anyways, he had a ton of chemo, lung function was poor, he was ok for a bit and relapsed quick.. and then had a transplant... (i am not sure how he was a candidate since his lungs seemed weak already) but he did.. when he relapsed, it moved to his bone marrow and also spinal fluid and brain.. he got chemo into a port in his brain. Radiation before the transplant... sounds like he was in tough shape to begin with.. once i saw the diagnosis was different than chris', i was able to read more ... if it were too close of a disease, i would have stopped reading..
anyways, i was able to relate to all the things the wife talked about regarding the great nurses and the unit and the heartache.. but then i balled my eyes out towards the end... so sad... why do i torture myself?
Sophie felt bad.. she even warned me and questioned if i should read it. but its ok.. i need to cry sometimes.. I am glad Chris didnt wake up while i was crying

anyways, at that point it was later than i realized and i missed the bar outing...

Anyways, sorry for jumping around. I have been wanting to write a book for a few years... maybe a novel based on parts of my life but tweaked a bit.. and also about my crazy divorce and ex husband.. could make for a funny book.. and now, with all this with chris, i think about wanting to write a book to help loved ones of cancer patients deal with everything and maybe also a book about all we went thru this past year.. and when I read this woman's book it made me realize how many people must want to go the same.. but the publisher didnt edit or fix her book cus it woulda cost a lot of money.. so now i have a plan, a mission... i can really work towards this goal.. help others.. and maybe try out my writing ... see what happens..
i wanted to fix her spelling mistakes for her... sucks that they didnt fix it for her.. woulda been so easy

ok.. so Saturday night, i was going to sleep here because of the snow.. but the roads werent too bad, so I went home to sleep.. for a few reasons...
i forgot to eat dinner.. was starving and cant order food here anymore.. i am too broke... i am getting overwhelmed thinking about chris's lapse in disability money for a couple more months and his monthly bills.. i have no right ordering food when i can pack food from home...
Additionally, i went home because i have to take advantage of the weekend and get some cleaning and sterilizing done.. mom was willing to help me...
if i sleep here, i get up and by the time i get home its after 12 and then all i think about it getting back to the hospital... so i dont get much done home

So, i went home and slept. Oh, Chris was once again able to place a phone call... it was supposed to be Lew's turn but it was Haleigh's birthday.. so he called Ronnie and Haleigh was still awake.. she is 5! And she was happpy to hear from him... they talked and chris was tired... but atleast he is getting in a phone call once a day...

Sunday comes and I cleaned.. i was on my hands and knees scrubing the bathroom floor .. Rex watched it all.. he laid in the bathtub mat that i folded outside the bathroom door and poked his head out to watch me... then I helped my mom bleech the fridge and throw out all older jars and whatnot...
I got a bunch of stuff done in the bedroom... de-cluttering so there is less to dust... but again, Chris and i share a bedroom and we have a lot of stuff... its gonna be fun keeping that room dust-free and santitized...
I went back to the hospital and Dad Waxmonsky and brother tommy were there.. nice surprise..
I knew i missed tommy's call but i was gonna call back when i got here...
Chris was having a good day... nurse (Karen is back!) told me he was up and sitting in the chair for 4 hours... yay! and they put him on clear fluids.. so he already had broth and kept it down... he only had 2 bowel movements since midnight... or so... very nice...
But, now that he had visitors, he was wiped from exerting himself... we talked while he napped and then when it was time for meds, the nurse said i could try giving them to him.. Chris said no when i asked
5 minutes later, his dad told him he was sleeping for 2 hours and why doesnt he get up to take the meds and talk to him.. so guess what? He did.. he sat up in bed and talked for 2 hours... it was nice...
They brought him donuts, that he cannot eat yet, but i can.. wonderful.. and they brought him a framed picture with the Footprints prayer... Sophie hung it up in his room tonight...
and they brought magazines and a calendar.. Chris seems excited about looking at them

So, they left and Chris napped again. but then the restlessness happened.. we hugged and he adjusted and now its 1130pm and he is sleeping.. i will leave soon but he hasnt had a bowel movement since i got here... soooo i think he has only had 5 in 50 hours or so.. i dont know... all i know is that they are telling me that frequency and volume are going down.. so i am trusting them

Oh, the Giants lost to the Eagles today.... I hate hate hate the Eagles.. it should have been Dallas but the damn cowboys messed up royally in their last game and the Eagles snuck into the playoffs and they beat 2 better teams. what the hell? The Cowboys need some fixing so i wont talk about that.. but Manning.. what happened? grrr... so i am pulling for the Ravens and the Cardinals... I think Arizona can beat the Eagles.. they probably want it more than the Giants.. but anyways...

Tomorrow is Monday... Physial Therapy will come back and Chris will be on his way!

Sophie is off until Saturday night :( I hope Nina is back. Isabel has been here for a few nights so I assume she is off tomorrow too... I think Nina and Kathy and Tanya are due back soon.. so i will cross my fingers... Tracy is moving to says, so i dont think he will get her at night anymore... Karen is back for days tomorrow....
I am not looking forward to work tomorrow.. but next Monday is a holiday so I am gonna be starting a 3 day weekend on Friday...
And, then I have some days to take off once Chris is discharged

OK... Signing off.... xoxoxo Jenn

Waiting for Bone Marrow Biopsy Results & Quick Update

Yesterday, I came back to the hospital after the Rutgers Job Fair at 315pm...

Karen was with him one on one cus she is training and Jen was technically helping.. but Karen was assigned to just Chris :)
He did his physical therapy and only had 2 Bowel Movements during the day...
They also did the bone marrow biopsy
They will have preliminary results Thursday or Friday...
They are checking to see if there is any sign of leukemia in the bone marrow.. or any infection
Nerve wracking.. waiting

At night, Jen was back and Chris would wake up and be so uncomfortable... he cannot get in a good position in that damn bed...
Thats his biggest complaint...
I left at 11pm or so... I felt so gross cus i slept at the hospital Tues night and hadnt gone home all day Wednesday until 11pm...

Today, Thursday, I went to work and came to see Chris over lunch. Nothing too new. Chris feels blah.. He doesnt even want to listen to music like he usually did.
He isnt acting depressed but i cant imagine how he wants it totally quiet... awwww
He did physical therapy again... he feels like he is getting stronger everyday.. but still cant take more than a couple steps and needs help to do that.. so hopefully by Sat/Sun, he will be better with that... i cant wait to be able to walk the halls with him

Anyways, i was told he went most of the night last night without a bowel movement *until 6am or so)... and today he had 3... so its not getting worse

At lunch, chris slept for most of it.. but Anne told me they still had no results.. were hoping to by end of day but maybe not til tomorrow

Well, I got here after work and found out there were no results...
Liz said she asked Strair but he said he was calling them again... and he had left.. so I assume he didnt get results cus he woulda come in to tell chris if he did...

So, I will be coming back here in the morning to see if they have anything before I go to work...

He had Liz during the day and she takes such good care of him... Jen is here again tonight and the consistancy is nice... she said he did good...

Now the damn waiting for these results..

Well, he is sleeping now.. so I am gonna get my stuff together and go home...

Lots of prayers tonight for good results tomorrow...
Tomorrow he also gets a 2nd dose of Remicade for the GVHD.. hopefully it starts making the diarrhea slow down...
Oh, and that kid who was next to Chris since this whole transplant.. the one who went home a few days ago... he is back :( diarrhea still... makes me scared but also realize that if chris were walking, maybe he woulda been sent home and had to come back.. that kid really pushed to get discharged....

ok, i will update tomorrow with results
love ya Jenn

Meltdown, More Diarrhea... Steroid-Resistant Graft Vs Host...Ugh

So... I had left Sunday night at like midnight... Chris was seeming to be sleeping and ok...

Monday I went to work and went to visit over my lunch break... Anne, the Nurse Practictioner who is only assigned to transplant patients, tells me he had a meltdown shortly after I left last night... I do not think it was related to me leaving... he was just tired of not being able to move.. tired of being super uncomfortable in the bed.. and wants to go home.. apparently he was telling Sophie he was going to sign himself out... Sounds like he was borderline nasty.. not sure exactly what that means... And he loves Sophie... So I know that its not Chris... well.. its not the normal Chris.. Anne also mentions that they are going to put him on an anti-depressant to help him and that Dr Strair saw him in the morning and wants to talk to me and him about where we are in this process... Anne also mentioned that they talked to him about rehab for his physical therapy as an in-between when he leaves here... and she noted that Chris seems against it... so we talk a bit and then I went into Chris's room

Nancy is his nurse! woohoo.... she said he had been pretty good for her.. she is training a new nurse, Karen... Anyways, Chris is out of it and Nancy tells me that Dr Strair put him back on Dilaudid!!! Because Chris said the morphine wasnt working for his knees....
ooooh boy... Nancy is also not happy about this...

I went back outside and talked to Anne... she wasnt aware that the dilaudid made him hallucinate and all that.. She said she thought it was the Ativan.... It kills me that there arent some major bullet points on the front of his chart... a ton of nurses know about his dilaudid reactions.. the fact that he talks nonsense and gets knocked out way to much and just does really bad things not even realizing it when he has dilaudid.. Liz the nurse was near her and I was like "hey, ask her.. she has seen is first hand...." anyways... I explained to her that I really felt like he was asking for pain meds when he wanted to sleep.. .not so much for the knee pain he says he is having...

Anne switched it back over to morphine... I mentioned Sharon and Anne said she had been there earlier but Chris was sleeping. Anne asked me if I could come at 730am to see Dr Strair the next morning... she went on to say "well you tell us a good time.." I thought, hmmm.. yea,,, I know Dr Strair has clinic appointments all day across the street... let me suggest noon or 6pm...lol... So of course, I agreed to being here at 730am... Getting up at 545am is fun when I am already not getting a lot of sleep.. what the hell right? lol.. sorry venting...

I talked to Chris while I was there for lunch... he talked a bit... Nancy pointed out that she felt the anti depressant was a great idea... She said he needs it.. seems he lost some of his fight.. I agree... this is not the same old chris these days... Cant blame him.. you trying being stuck in a room for a couple months, stuck in bed for that matter... and going to the bathroom in a bedpan... you'd lose your mind probably... anyways, he explained to me that he is depressed cus he is stuck in there and cannot get comfortable and that he wants to go home... so i sympathized and he was actually his old self when i had to go back to work... told me to "get out of here so you dont get in trouble at work" and gave me a kiss

Anyways, I grabbed Bengay for his knees at home after work and went to see him for the rest of the night. My brother also came for a couple hours after work.. bought him a new Spuds dog... or snoopy... a stuffed dog.. ;) He is still kinda down. Sharon had come to see him and talked a bit but he was groggy

Tuesday morning comes. I get to the hospital just in the knick of time... damn 27 in Highland Park was slow as shit... and then the hospital deck was full... what??? i drove around behind slow ass cars and finally got a spot... then i get upstairs to his room and he was just telling the nurses to call me cus i might be late or forgot.. ugh.. i was 5 minutes late... and i gave myself more time than i needed... and my own fiance is doubting my ability to get there :(

Dr Strair comes in and basically tells us that his graft vs host is steroid resistant... It hasnt slowed down... Now, Aunt Ro had mentioned to me that Strair said on December 22nd, that it would be considered that in 3 days if the diarreaha didnt resolve... but now its 10 days later or so... and because it seemed to be a little better or at-bay when the lungs were getting better, i assumed things were slowly getting better... i guess not... and its affecting his skin (another common GVHD area) his face is sometimes reddish.. neck is a little discolored.. :( i wondered why some patients walking the hall had that coloring.. now i understand..
Strair basically said that this is "difficult". He told Chris that they will be giving another dose of Remicade (spelling?) on Friday. he got it once this past Friday.. a pretty harsh drug... and its only once a week. Anne did mention Monday that it often times takes 2-3 doses... Strair told Chris that they all empathize and that no one knows exactly what they are bargaining for... and that some people lose their will to live.... Chris said he has not.. he said he wants to fight..
Strair told him he has to get moving to get his strength back.. He said that this GVHD is rough and that it has him bed-bound and that he has to try to get out... and that it might help

(sidenote: this frustrates me to no end because he was in a chair on Thursday.. took a few steps... or was that Wednesday? all i know is Physical therapy didnt come on the holiday thursday.. i think they came friday and just did leg exercises... and they didnt come this weekend... i am sorry, but someone should be able to somewhat force him to move around.... his stubborness is from the drugs and his illness.. not because he doesnt want to get better.. and I tried.. i asked about PT on the weekend cus they were here on saturday for other patients.. but i got nowhere)

So, Strair went on to say that this is as difficult as before the transplant.. I assume he means to treat... and to deal with... I am not sure what the chances are that his GVHD wont get better or what else could happen (get worse) and I really dont want to know details of that right now cus this is hard to handle...
Strair mentioned that if it doesnt get better in the next 24-48 hours that they will add another drug to try to resolve it.. but that every med in this situation has its own side effects :(
He said these drugs can be like chemo (making you tired and want to sleep, etc)

Chris was not expecting this.. BUT i think what Strair said helped.... he seemed a lil more motivated to fight and when i had to go to work, he was sweet and i left...

I went home after work cus there was a chance of bad icey whether and i didnt want to face icey roads at 10pm or later when it would be time to go home. And i Have to be at rutgers wednesday (today) so i slept at hospital

Anyways, last night, Tuesday, Jen was his nurse... they were short staffed (down by 1 nurse, which is a pretty big deal in this unit)
Chris's diarreaha was a lil worse this night... and he was getting really frustrated because when he would wake up and realize he had an accident, he would call and it would take them a while... maybe not forever for most people, but he doesnt want to lay in his "stuff" and because i was there, i could see thru the window that there were nurses sitting there... its hard to be here and see that but its also annoying to think how it would be if i werent there...
plus everytime they cleaned him or helped him reposition, they often forgot to give him his call bell so i would get woken up by him talking to himself and i would get up to get his call bell.. i dont care... but what if i wasnt there?
One time, i woke up cus he thru a bottle of water at the door... he didnt have his call bell... How did the nurses not hear it? then he called when i gave him the bell and he said his machines were beeping (when he really needed to be cleaned) i guess he was a lil out of it... but i watched the nurse come to the door to hear that there was no beeping and she walked away
CAN YOU PLEASE COME IN AND CHECK ON HIM???? THEY KNOW HE IS OUT OF IT....
So i get up, again, and tell them... and they looked sympathetically at me.... so they came back in and helped him
Oh, and everytime they came in, they turned the bright lights on... there are dimmer lights..
Chris kept complaining about it to me... i dont know if i can request they not do that? but what if the nurse has bad eyes? i dont know

anyways, its not wednesday.. i have to go to rutgers for the job fair.. and Chris is with Jen and Karen the trainee today (she is an experienced nurse, just not on this floor)

I am praying Chris's diarrhea gets better...

Oh, duh... yesterday he got a good workout,,, and got in the chair... and he was in great spirits last night.. wanted hugs.. talkin.. so it was nice.. he said he saw sharon and it helped...

Now, its wednesday, like i said.. karen and jen are with him today and its good cus karen is a trainee so she is extra hands...

Talk to you all later
prayers please
xoxo jenn

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