The New Stem Cells Have Been Transplanted...& Jenn Vents

Well, I didnt sleep much last night... too much on my mind... i woke up at 4 and 5 and 6am...
then... i woke up at 7am!!! Ooops... And I was planning on being at the hospital by 8

I showered and then i logged in to work computer from home and did some work and got to the hospital by 10

When i was on my way to the hospital I called chris and he said he didnt know what time the transplant would be but that it would be in the late morning...

I got to the hospital and I see Sharon on my way in - She tells me that the transplant will be at 11. Chris was sleeping but she would be back. I walk back down the hall towards Chris's room and I see that Nancy is not his nurse :( Luckily, it was Valsa, who Chris and I like... but I was worried Chris would be upset... Now, I know I have been very stressed and anxious and worried and all that.. and sometimes I am not sure if its that or if I have a legitimate concern. Its hard to tell sometimes because when something bothers me at the hospital, it gets me very upset and I cannot tell if I am overreacting because of being stressed already OR if its really something that should bother me...
Anyways....
Nancy tells me that his transplant will be at 11... and asks if i knew.. i only knew because sharon just told me... Maybe Chris knew and didnt remember.. but all he told me on the phone was that they estimated late morning..

So, now I am confused because the biggest reason I was given for not being able to request a certain nurse was that there are so many pregnant nurses on the floor and they cannot do chemo. Chris is not getting chemo... so if there are too many prego nurses on today, he would get a prego nurse if they need Nancy right? yea.. WRONG... i dont see any prego nurses... besides the head nurse Mary Kate... and I dont mean to sound like a complaining bitch but we dont ever ask for favors... I love most of the nurses, so not having Nancy isnt the most awful thing... She is great.. she checks on him regardless... but....
and I feel bad writing this.. because i know Chris offered this blog to 2 of our favorite nurses.. but i dont know who else now reads this blog and i dont want to offend anyone or talk badly about anyone.. but it is what it is..
This site is to share Chris's journey for everyone to read and to share our experience... so I am gonna just be honest.. although its been bothering me all day as to what i would say on here
I guess I am just wondering why, if I am asking for a certain nurse, and its going to be hard to give her to Chris, why wouldnt you ask me more questions? Dont you want to know what about the other nurses isnt satisfactory? but maybe its my fault for not throwing anyone under the bus... Maybe I would have to go to the head nurse and complain about every little thing that goes wrong in order to not have certain nurses...

There is one day nurse that I know Chris is not comfortable with... she is not proactive... i feel like she doesnt understand me sometimes... i have caught her not giving the correct info to the night nurse or slacking on stuff... and it bothers me... on top of it, chris gets annoyed with her too... so thank goodness she wasnt his nurse today... Most of the nurses are wonderful.. it feels comfortable walking into the bone marrow unit because we have known them for so long now.. but as amazing as i say they are, it bothers me when things go wrong...

So.. when I got into Chris's room today, he was in the recliner.. which is great.. and he is still nausious... Not 10 minutes into me being in there, Chris is asking me for a bin.. he is going to throw up... Well I look around and see no bin near him... there are bins near the door with gauzes and meds and syringes in them.. so I grab the garbage can and bring it to him...
I dont know if I am overreacting or not, but now I am pissed... why on earth would you help Chris move to the chair, knowing he has vomited 3-4 times in 3 days and been nausious and not put a basin near him??? I cannot help but think "what if i wasnt there?" I know damn well that if he had to press the call button for a basin, he woulda thrown up all over himself..... On Tuesday, I was on my way there, and I was on the phone with him, and he had called the nurses 2 times asking for a urinal... It blows my mind that he uses them, they get emptied, and then they arent always put back near him... and he isnt allowed to get up alone!!! I talked to him for 10 minutes... 3 times he called.. I hung up with him.. i got there and Will the CCT told me that Anne found him getting up himself to get the urinal.... and was telling him not to... Welllll... what is he supposed to do? wet himself? no 28 year old wants to pee in his pants.. he isnt 80... and he wasnt the moron who took all the urinals away from him.. i just dont get it... Patient not allowed to get out of bed alone.. uses urinal … LEAVE THE URINAL BY THE BED WHEN YOU EMPTY THEM

So, as you can imagine, on top of being stressed because although I am sleeping at home and am pretty well rested, I am emotionally tired and scared and worried because of what my fiance is going through.. Then i walk in to see Nancy isnt his nurse, Mary Kate isnt his nurse, he woulda thrown up on himself if i wasnt there, and my Xanex has obviously not kicked in...

I step out of the room and see Nancy so I told her he was vomiting... and when she came in, she brought the new anti-nausia that they gave him yesterday evening...
Now, last night, it seemed to work, he nibbled on dinner and didnt throw up last night
However, no one gave it to him all night... why? i dont know… Nancy told me it wasn’t ordered like it was supposed to be.. so it wasn’t the nurse’s fault
So, poor Nancy, she took care of Chris in the post-vomit moments... and i think i had a bit of an attitude when she went to get the basin, i commented on no one putting it near him.. but come on... ugh

Anyways, Sharon came back over... she wanted to be there for transplant.. well, we wanted her there too :) and Dr Zho and Anne and Dr Biren.. cant remember his last name all came to see him... they noticed his slurred speech and i told them he has been very sleepy, out of it, slurred, mumbling, etc.. and they feel its the drugs... suggested giving less ativan... i dont know what to do.. they ask him things and he looks like he isnt listening or doesnt want to answer... i give them my 2 sense.. but i am sure they know why he is delayed with responding... or understand
Last night, Dr Biren stopped in to check on him and Chris was so quiet and out of it... i told him he got some food down and chris told him was very tired...
After he left, I said something to Chris and he was like "oh i love that doctor" lol i wouldnt have known from the response he gave him... hahah
Today, Chris told the team that the combo of ativan and the new stuff works… this was after Anne suggested cutting back on the Ativan.. Chris tells the doctors something is working but he only got the new stuff once… and they want him a little less sedated… I want him to try the new stuff without the ativan.. and there he is asking for it again… it’s a tough balance.. they want him to be up as much as he can.. and he is so nauseous that he wants to get the ativan.. some nurses say Sleep through it.. others are like ohhh why are you so sleepy? Lets not do ativan til night…lol

So, Chris was getting pre-medicated for the transplant.at 1030am today… Now, he is extra sleepy... and is feeling miserable and nausius... they dont want to give him ativan til after the transplant

The stem cells arrive... YAY!! they come in a cooler... like a construction worker's lunch cooler... and they look like red blood.. the donor is Blood Type "O Positive" so Chris will be too one day soon... they take his vitals every 15 minutes during the infustion... all is good... and they give him ativan..

Dr Harrison stops by... he makes faces in the window... we havent seen him since end of november... (the German speaking crazy doc that we love) So, Chris lights up when he sees him.. he comes in and says (while looking at the stem cell bag) "Ohh you are getting a brain transplant" lol he cracks us up... He goes on to say "and its a surgeon's brain.. you know what that is good?... cus its never been used..." he then sayd "well atleast we no longer have to worry about getting you to transplant" and he is so right..
I was having nightmares about the donor's stem cells being on a helicopter and crashing.... no more worry about that...

FInally, Sharon can pray with us and we just hang.. i do some work for work... and Chris is nausius.. doesnt eat all day

his basin had been sitting all morning with bile in it.. so i decided to rinse it out... these are the little things that are bothering me... I love chris to death and will clean his vomit at home forever if i have to.. but i am here for emotional support and i am cleaning his basin... jumping up to get him a basin... i dont get it... i am there for him.. i am not paid by robert wood... after the morning i already experienced, i wasnt happy.... it bothers me... and i dont know why.. if nancy asked me to clean his basin I would have been happy to.. but that’s cus she treats chris like her son.. and I love her

I was always a very even-tempered person.. takes a lot to bother me.. i always do for others.. over generous.. etc... so this is weird for me to be so upset and reactive.. but i guuess when you love someone so much you get protective.. i have learned this... and watch out when we have kids... lol.. but anyways...

Lets not forget that Chris had a bad experience with one doctor a few months ago and i asked 2 doctors, called jackie, a nurse called the doc, etc... and you know he wound up having to have her again for a spinal... we were told we are completely entitled to not have a doctor treat him if he isnt comfortable... soooo again... we barely cause waves, and when we do, nothing happens.. its really disappointing.. and again, today was ok... he didnt get the nurse he doesnt like.. but it makes me realize he very well could have...
Nancy ran into me in the hall and said she wished she had him and i told her we asked.. she said (i think this is what she said) that others have asked too.. and apparently it makes some nurses feel bad...
She went on to tell me that she still checks on him and helps out even when he isnt hers... but some nurses don’t like when she does that… She was the one who called pediatrics yesterday and got them to try a new anti-nausia drug… So I said :”I don’t care if the other nurses don’t like it.. atleast she is helping and looking out for him… other nurses barely do that they are supposed to… they give the drugs .. they don’t always pay attention to if he takes them.. they forget to do the wound dressing unless I remind them…he has issues and they don’t call the doc… etc etc.. Nancy I know does.. and other good nurses do… So maybe if so many patients are requesting Nancy, it should say something to the director.. get the other nurses to get their act together… I don’t know.. its not fair that we all cant get the care that Nancy and Isabel and Tanya and Melissa provide… I will stop there… cus if I name them all it will be obvious who I am not naming
And although I am the one venting here.. Chris makes it very clear to me when nurses annoy or upset him and I know it ruins his day.. and it makes me feel like I cant leave … Now, over the next 1-2 weeks chris can have all sorts of complications from the transplant and I guess if he gets really sick, that’s when I want nancy and Melissa and Liz taking care of him during the day… but I almost feel like I have to tell them who chris doesn’t like or want to be his nurse to prevent him from being miserable

Oh Dr Strair stopped by and said hi.. he is back from conference…. And will be back tomorrow… he told chris so far so good… “another 2 weeks before you can go home” now that’s a loaded sentence.. obviously he has to have counts go up and avoid major complications.. but lets pray for a discharge by new years eve… I have to ask for more prayers, right? Lol… Chris loved seeing him too.. Dr Strair and Harrison make him light up.. its cute

Ok, so enough about all of that… I finally ordered my Christmas cards yesterday.. I have been meaning to write out regular ones for weeks, but I cant even get through chris’s mail, bills, and my work I take home before falling asleep, so I ordered them from Shutterfly.. I cant wait…I love writing addresses and making them personal. But I think everyone will understand I don’t have time for much personalization this year…

Speaking of mail and bills.. I have to really get all his bills organized.. they keep piling up.. I have to call all sorts of radiology, urology, RWJUH, JFK, etc etc to talk about payment plans.. although he has no money for all these balances… and then there is my own bills… my poor dentist finally got paid after almost a year… I just have no time for any of that… and chris’s long term disability wont start for another few months cus he hasn’t even done the interview yet.. I need a secretary… and I have to get Rex’s nails cut… I need a genie (in a bottle) maybe…
Or a chauffer… something.. a maid maybe.. my poor mom is doing our laundry cus I am never home and she has been working 630am to 430pm most days… on top of her back and neck and joint pains... ugh... when its all over maybe I need to write to Ellen and Oprah to do something for my parents.. or Exteme Makeover home edition....
Boy.. what a venting session this has become.. but who else can I talk to?
Chris is sleeping… its after 11pm… my coworkers are so patient.. they listen to be complain and vent and bullshit about the hospital and everything all the time…

OK, so Chris is still nauseous… he has pills to take… he threw up bile again tonight.. a little while ago… the tech came in for vitals... basin still on chris's lap... he asks for it to be moved.. the nurse was in here.. so i get up from doing work and take the basin.. rinse it out... i guess when they see a basin of bile on your lap, they dont think they have to rinse it out or anything.. maybe i am nuts
One pill is important for transplant and another is the anti-seizure.. the 7 others are just stuff he takes everyday…
Nurse asked doc to switch over to IV drugs and they said no.. they want him to see if he feels better after more anti nausea meds..
But.. hello.. here we go again.. he hasn’t felt better all day.. hasn’t eaten.. threw up… yea… and I need to go home
And the nurses say “tomorrow when the doctors come, talk to them about TPN and his nausea and blah blah blah..” I AM NOT HERE TOMORROW.. CHRIS SLEEPS THRU EVERYTHING… what do I have to do to get the right stuff discussed if I am not here? Shoot me please…he says things incorrectly sometimes… or forgets…. Or is too sleepy to express his symptoms… ugh….

I got texts and calls and emails from bethann, lori, dana, Christine, Christine, jeanie, matt, Shannon, Rebecca, Lauren, aunt ro, aunt cathy, my bro, my parents, tommy, gina, eileen, ronnie, and others today.. and I am sorry if I didn’t reply or dropped off in mid converstion.. its been crazy… but I thank you all for your check ins and whatnot.. they mean so much

I think I am done complaining…sorry if I drove you nuts reading this.. sorry if I left anything out or any body out…

I absolutely have loved the treatment we have gotten here since June, for the most part… But little things really set me off lately.. especially when I see it upset Chris because he is a good patient… he doesn’t say much lately but its not his fault…

I have been very cranky lately and I think this is all hitting me… I feel very alone even though I am not.. but the guy I could usually talk to about everything isn’t really talking (or awake) and it’s the holidays and everyone is busy… and I think although it a happy time of the year, it’s a crappy time to be in the hospital.. and its hard to keep my head up…
It will get better

Goodnight everyone
Xoxox Jenn

New Pics

this is the new toy i bought rex... couldnt get a good pic of him in it...

































me and chris this past weekend

chris eating italian ice with blanket on his head

more funny faces with blanket on head

Tomorrow is the Big Day- Day Zero

I know I have been slacking... no updates in 72 hours... sorry

Monday Dec 8th- I was driving to the hospital in the morning... Called Chris and found out he had thrown up at 6am :( Just once... but they gave him more Ativan...
I went to work.. barely talked to him during the day... No more vomiting though...
They started the immunosuppresents... and they gave him red blood... so he was pretty groggy...
When I got there after work, I asked him if they did the ecco cardiogram... and he was in and out of sleep.. i finally understood him.. they did it in the room...
I stayed there til bedtime but he was sleeping most of the time anyways... Padma was his nurse Monday night... she is a good nurse... I know he is taken care of when she is there

Tuesday morning I went to the hospital... still sleepy... they have him on round-the-clock zofran and compazine... ativan when he needs it... Anne was his nurse.. her last day... she is gonna have her baby in the next few weeks... He slept all day...
When I got there after work, he tried to have some canned pears and his Boost... but didnt eat much else..
I did get him to sit in the recliner... I washed his legs and feet and gave him a pedicure and moisturized him.. his skin has been so dry... peeling on feet... so it was time to pamper him.. now i know how to get him in the recliner... Then he got back into bed... Nina was his night nurse...
I asked Mary Kate after work if he could have Nancy as his nurse (she was coming back after like 6 days off) but because there are so many pregnant nurses, Nancy might be needed for chemo patients (prego nurses cannot do chemo)... But she understood and told me she would do what she could... Chris feels very comfortable with her because she takes very very good care of him.. most of the nurses do.. but she really goes above and beyond.. i know she cares and looks out for things.. she is proactive... My brother also surprised us with a visit for a while..
Chris talked in his sleep a lot again... he was trying to lick something in his dream.. later on he was using his hands in a driving or boxing motion.. i wish i had a video camera.. awwww
Nina was on for the night... all is good
I left late at night and went home...
My dear cat who always greets me and jumps from the bed into my arms tried something new Tuesday night.. he jumped from the floor onto my shoulder ... what a high jumping maniac... i know he loves me and thinks he is a human child of mine.. but he is nuts...
I went to bed

Wednesday morning (today) I saw Chris this morning.. still icky.. but ok.. Melissa was his nurse today... Next best day nurse we coulda gotten today... she is a sweetie.. so we are happy...
After all he has been through, its just so much more comforting to have familiar nurses (not ones who he hasnt had before) when he is going through the transplant and the days following...
I went to work and talked to him briefly...
On my way home i talked to chris and he had thrown up today (2nd time in 3 days)... he threw up some pills... and crackers.. hadnt eatten much..
When i got to the hospital, Nancy (see, she is still involved) yay! tells me that she called pediatrics oncology or something and was told about another anti nausia drug.. they had just given it to him....
It worked a lil so far.. he nibbled on some of his dinner... and seems to be a little better

Tomorrow (Thursday) is the big day... Not sure yet what time the infusion will be (transplant or infusion of stem cells) It depends if they were transported tonight or if its flying in tomorrow...
They will give him the new stem cells and apparently it comes in on ice.. its super fresh.. and we dont know if the donor donated in NY, Cali, Scotland, Montana.. could be anywhere.. so it depends how far it traveled and all that good stuff... but tomorrow is the day
I am gonna work here from the hospital tomorrow..
They will be giving him benadryl, anti rejection, tylennol, etc etc... so he will be sleeping during it i am sure.. but i want to be here for emotional support.. its a big day..
apparently, bone marrow transplant survivors call it there new birthday... so anyways...
I am hoping to see Sharon tomorrow... or soon if not tomorrow
Lew called him.. i think they are talking now...
My mom came with me today after work.. she brought a clean afgan because i want to take Aunt Ro's home to clean (i imagine he should not use it for 5 weeks without washing it once in a while since the room is supposed to be as sterile as possible)
After tomorrow, we wait... over the next few days, we wait to see how things go... and hope he doesnt get too sick... hope that the marrow doesnt reject his body or vice versa...

anyways, Xanex time is coming soon...
more prayers are requested... thanks everyone for all your texts and calls and emails and whatnot... i am still getting back to some of you.. its been very busy.. sorry for the delay
Let me know if you want to visit.. I will be around - company is good.. especially when chris is sleeping a lot...

I have a lot of pictures I will post later... stay tuned

xoxox Jenn

Nausia Begins... Grrr

Chris woke up this morning... called me (I slept home) and told me he was ok but had a fever in the middle of the night... 102 or so
But it broke by 6am or so
He told me he was about to get his last chemo. Jen was getting that ready for him (Anne is prego, so cannot give chemo)
I asked if he wanted me to make homemade food.. he said that sounded good.. so I made a big pot of macaroni and cheese... He said he could go for starbucks hot chocolate so my dad drove me to the hospital and we stopped at Starbucks...
jeanie drove me home last night and I left my car at robert wood..
We went to houlihans last night for my birthday outing.. and we hung out with chris.. and now i was able to go home to sleep without having to drive...
Anyways, my dad dropped me off today around 130pm.. and Chris was having the nausia hit pretty bad,,, he was very sleepy cus the Zofran and Compazine wasnt doing enough so he got Ativan... but no appetite :( so the mac & cheese went in the fridge ... and he took a few sips of hot chocolate. poor chris....
We watched football today and chilled...
We found out they are doing an ecco cardiogram tomorrow (not sure how that is spelled) to check his heart (like an ultrasound of heart) they want to make sure they arent overlooking anything because his heartrate has been a little elevated and when he gets up or moves it goes up a little more
They are also testing a thyroid because apparently there is a hormone that if it is low could make the heartrate high... and that hormone could have been affected by all the chemo and whatnot he has had... so they are just checking everything.. they dont want his heart working any harder than it has to and they want to make sure there is not something wrong that is being overlooked...
Tomorrow, they start immunosupressants (totally spelled that wrong too)
And we are getting closer and closer to transplant...

It is now 830pm... Chris is still unsettled.. They decided today to start him on round the clock zofran and compazine for nausia.. gives him a baseline.. Ativan is on order whenever he has breakthru nausia.. he barely ate his pb&j dinner.. so he just asked for ativan and will attempt to eat some more before bed.. we are going to watch the redskins game for a bit... hoping they lose because Dallas lost :( and can you believe the damn Eagles won?!?!? booo
He told the nurse he would fight the ativan and stay awake but it looks like ativan is winning.. he is sleepy...

Until later...
xoxoxox jenn

Saturday Day " -5" 1 more day of chemo

Well, last night (friday night) Chris spiked a slight fever... 100.4

I think I told you that last night..

But then later on his heartrate was up to 180!! They were concerned... hooked him up to the monitor... and asked if he was anxious or anything...

Doc came in... suggested fever could cause that... and that he might be dehydrated... because they did an EKG also and that looked fine. They want to keep an eye on it.. but after they gave him Tylennol and fluids last night, his heartrate went down to normal...

Nina was his nurse after 11pm... Between her and Carol, they were checking on Chris and then his heart rate went down to normal, although still higher than normal but it was normal for Chris all week...

I slept at the hospital since it was late now and i was tired...
Saturday morning I went home and ran errands with my mom..
Chris and parents went to see Chris... and I got there a little later

Today, Anne was his nurse. She is due in a few weeks and this is her last weekend working
They said that all day his heartrate was good.. between 105 and 125 or so... and his temp is 99... so we are good..
They gave him red blood today
That makes him sleepy

Last night, Asante was his nurse for a few hours before Nina got in.. She saw me today and printed out the list of all the medicines Chris is on... and when he gets them.. she remembered I asked about antibiotics... i thought that was so sweet.. she remembered and went over it with me...
Now I know exactly what times things are due.. although i have to fish through some of the jargon i dont understand... and it also says what he will be getting 30 minutes before transplant (infusion) etc...

TOmorrow is his last day of chemo...
Dr Aisner is on this weekend and saw Chris today... he explained that anything could cause the fever he had.. it could be a pimple and then he gets a fever.. all because his immune system is becomming so suppresed... They are continuing to monitor.. so far all his cultures have come back negative... and they arent sure what was up with the heartrate last night.. but they are watching... and the infectious disease docs are involved for antibiotics monitoring...

Tonight, Jeanie is meeting me here to see Chris and to take me out for my birthday.. I still cannot believe i am 29.. but its about time i go out and celebrate it...

Talk to ya all tomorrow
xoxox Jenn