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
Wednesday, January 14, 2009
Sunday, January 11, 2009
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
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
Thursday, January 8, 2009
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
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
Wednesday, January 7, 2009
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
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
Sunday, January 4, 2009
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
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
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