Saturday morning... I woke up at home and went ot breakfast with my parents. They dropped me off at the hospital around 10:30am...
I got there and Chris was up... Dr. Strair had already been in -- Chris told me that Dr Strair told him they were changing some meds around for his tremors... I knew this the day before but I wasnt sure if there was anything brand new... and Chris was not sure either...
Valsa was his nurse and I told her I wanted to talk to Strair if he walked around again...
3 minutes later, Strair was in the room...
He gave me an update... Chris is back on Neurotin- should help with tremors. They took him off Cyclosporine, which I knew... replaced by an anti-rejection pill. Cool. They also added another pill to replace the blood pressure med that they had him on
Strair basically said they would see how the Remicade is working and add another graft vs host med before the end of the week if it doesnt work
He had to get to his rounds.. but I asked him if I could wheel him (in a wheelchair) around the halls and whatnot to get him out of the room. (I had asked head nurse Nicole this yesterday)
And he thought it was a great idea. Strair also mentioned that morphine was on the orders when he needs it.. but nothing else... sounds like Strair wants him to stay as un-medicated as possible... Ativan is on order for anxiety, which can also help with sleep
So, Valsa un-hooked Chris from the I-Vs and I took him out of the room. The nurses were like "take him down to the lobby for a while" Soooo me and Chris got on the elevator and sat by the fireplace in the 1st floor lobby... I wheeled him all the way down to the Childrens Hospital.. then down to the atrium.... we stopped on 5north to see his old friends up there... we saw Jolenta...
Then we had to get to the 4th floor for chris to take a bathroom break... but when he was done, he wanted to go back out for more cruising... yay! So, we rode around all around the halls and then we came back... he was tired. Oh, at one point, Chris's pumps were beeping. So we called the bell. The receptionist hear them and acknowledged them when we called. I saw no nurses at the desk. I was pretty sure a lot of them were eating in the lounge.. which is fine.. but someone is covering... patients still get care during nurse breaks... I literally pushed hold 8 times... Each push gets you 3 minutes. Chris called again ... we waited... finally the nurse comes in and starts saying "I cant give you morphine.. i already gave it to you.. blah blah blah" So I interupted and said "thats not why we called... his machine has been beeping" She looked sorry.. but why wasnt the correct info relayed? I feel bad cus when I am not there, that machine beeps and beeps and beeps.. even chris was vocalizing being annoyed...
So, I had my dad come pick me up around 3pm and chris napped. When I got back a few hours later (7pm or so) Chris was excited for another ride!
The tech (someone I never saw before) was cleaning him up and then told us his nurse said maybe we should do it tomorrow instead. Chris was bummed. He was looking forward to the riding ever since I left. Sophie came in - she was not his nurse :( I told her he was bummed. Nina was his nurse but when she came in she said he could go as long as he was back by 10pm... that gave us 2 hours.. woohoo... We love Nina too... Chris does very well with her... She has a way of getting him to take his drugs easily and listens to her... She is a sweetie...
So we went for another ride. We went back up to 5north and were lucky to see Mary and Ade... his 2 favorite night nurses on the 5th floor. We finally got back to the 4th floor and Chris was able to get to sleep much easier....
Ade came up to visit later but chris was asleep...
Even though the diarrhea had eased up during the day, he had a rough night :( I slept there and he was up often. Luckily, he was able to sleep for a few hours before the diarreaha acted up...
Again, at 8am Ade came to visit, but Chris was getting cleaned up
We even saw Vanessa and Dustin, 5north techs Saturday night and Chris was happy to see them
Now it was Sunday morning. It was Christine Rabbath's birthday. I told Chris the day before and Sunday morning, that I had plans with Christine, our moms, and Dana, to do lunch. And, Christine was going to help me organize all Chris's bills, paperwork, etc...
So, Sunday morning, Chris finally recovered a bit from his rough night. Strair came in to see us. He asked who from psychiatry had been in to see him already. Chris said no one. Strair said someone would be coming Monday. He agreed Chris needs to feel better mentally...
He said that the graft vs host is only in the GI tract. So thats their concern. (I was thinking, atleast its not in multiple places at this point)
He said that if it wasnt better by Monday, they would add the new drug...
He was excited to hear Chris was getting out in the hallls (he saw us up on the 5th floor yesterday) He said "see you out in the halls later then"
Oh...
Dana gave Chris a shirt. I brought it to him Saturday. It says "Colorado.. Hows your Aspen?"
Get it? Hows your ass been? funny?
Chris loved the shirt
So I showed it to Dr Strair on Sunday morning. He got a kick out of it too
He said it would be great for him to wear once he is out of the hospital
We showed the nurses the night before. they got a kick out of it too
So, Sunday Strair was done with him and Chris wanted to go for a ride before I left. I had to leave by 1030am to get home and showered. Then be back in the evening
So, Chris calls for help. While we were waiting, we decided to try it alone.. you know.. the long wait.... I only had an hour or so. Chris put his arms around me and he stood up and I helped him into the wheelchair. Rose came in and she disconnected him -- we went a ride... back to childrens hospital.. back to 5north,... back to 4th... around the hall in circles...
Then i brought him back to his room... I told the nurses he was ready to get out of the wheelchair...
Chris looks sad. I asked what was wrong. He said he was not ready to go back to his room
my heart was BREAKING.... I wanted to cry... A few days ago he was kicking me out.. now he was loving the rides so much.... so Paula came in to help with wheelchair... but I mentioned to her that he was sad and she offered to take him for a ride.. i thought he was going to leap for joy.. he was like "lets go" so that made me feel better as I was leaving
This is exactly what I fear. I leave every weekend to do my things at home.. and he is usually like ok, whatever... but when he is like this, i feel so bad....
its not like the nurses have time to just be wheeling him around...
It is motivating him to keep up with physical therapy.. when we walk around, he says "walking next" or when we pass by the doors to outside he says "they will be my doors soon" Poor guy.. cant even imagine what he feels like.... but i am happy i can take him downstairs...
Anyways, I feel terrible that he doesnt want me to leave. It would have been a great time to have a visitor who coulda wheeled him around. A few weeks ago, visitors would watch him sleep or get very little conversation time... now he can be more interactive...
I had a great lunch with the Rabbath women and babies. Then Christine was a tremendous help with the paperwork. Ben & Sean are so cute. Ben loved his presents (we finally did Christmas presents) and then I went back to the hospital
I called rose on my way -- he was unhooked when I got back
So, we did a 2 hour ride again Sunday night.
I brought him Dunkin Donuts tea (he cant have coffee right now) and we had a date with tea as we rode around... the nurses were excited to see him in the halls... Carroll hadnt seen him in a couple days.. and Jen..
Oh, the night before, Sophie gave him chocolate, orange jelly, Polish candy.. shhh... didnt seem to do any damage.. but its clearly not a clear fluid... he was loving it...
So anyways, last night, Sunday night, after our long walk and stuff, he was tired... so we got him in bed and Nina was his nurse again... we had a good night... he fell asleep.. I slept over...
He only needed to go 2 times overnight...
This morning, we woke up and Karen is his nurse.
She wanted him to get up into the chair so early... intentions are good. but i know he wasnt ready... he wanted to get in the wheelchair and ride but not til the doctors did rounds so he could be done with that.. but she talked him into getting up into wheelchair.. then we waited and Chris was getting frustrated cus he wanted to be disconnected and go... Karen didnt realize that... Dr Strair had today off (i guess for holiday) so Dr Gahribo was seeing him.. but Strair was in the halls all day.. weird.. that man never gets a break... God Bless him
So, Gharibo sees him and is happy to see him in a wheelchair.. she says they will monitor bowel movements one more day before deciding.. also the psychiatrist is not coming (holiday...) bullshit... chris really wants to see him...
so tuesday supposedly.. i have been hearing "word" of this for a week... i think tomorrow it will really happen though
So Karen unhooks him and we are off... I am feeling very tense... he really needs to get out of the room.. he enjoys it.. its good for him mentally.. and i run into an obstacle after a breeze.. after an ostacle...annoying.. i think i come off as snotty but i dont care.... i dont know what to do
So, we get back from our walk. We saw Sharon. Chris initially was going to go into the recliner but was wiped from the walk.. so he wanted bed... Karen and Jen come in to help move him... and were talking about him going to chair... he isnt saying anything.. so I had to ask him if he wanted to say anything... he was JUST arguing with me and insisting he was too tired to sit up any more.. so I feel like the bad guy or the bitch for making him talk.. but i could tell he was uncomfortable... If i felt he was being lazy or silly i would keep my mouth shut
So, he rests briefly and agrees to eat some lunch
I go to warm up his tea and broth... and the toast he is now allowed to have... and they tell me physical therapy is here for him... its noon.. he JUST laid down after being up and about.. i am fuming internally... She comes in the room as I am giving chris his lunch and nurse says maybe do therapy first.. i want to scream... he needs to eat... first time all day... and he needs to get a break.. and what happened to PT being around 1:30 everyday? how can he plan? He is supposed to do his own getting around when they arent there... ya know?
So, PT notices lunch and she says she will be back in 15 minutes...
whew... So I told Chris he needs to speak up.. I feel like I look like the blocker or the bitch for opening my mouth and he told me he would and stuff... he also told me to go rattle some chains...lol.. he was annoyed about the inconsistancies
So... I saw the outcomes manager nurse Elena and spoke with her.. and PT...
Chris did physical therapy and I watched... She asked me to follow him with the wheelchair as they held him up with chris holding the walker... I was confused.. there was NO room behind him for the wheelchair.. and why??? arent they supposed to make sure he doesnt fall? ugh
So, i am looking at the foot rests on the wheelchair and i am thinking.. if he starts falling.. the wheelchair isnt going to catch him.. his butt will never make it to the seat... but i shut up
He takes a few steps slowly.. i am proud.. but it sucks how hard it is for him
Therapist told me he was able to walk a bunch more steps than that last week but its ok, meds and stuff cause weakness to fluctuate during the progress
So... he gets weak and is falling... i had to fight to get chair behind him.. "told u so"
Anyways... before falling into chair,, he was getting dizzy... she told him his body is not used to being in that position... so she asked if he could do leg exercises and he did... the dizziness slowly went away
She didnt stay too long.. asked him to sit in wheelchair for a while.. mentioned sitting there for an hour and having lunch in the chair.. ummm he just ate duh...
anyways.. i sat hext to him until he was ready for bed...
He finally dozed off and the rehab doctor came.. DO WE HAVE TO WAKE HIM UP? are you that important? i mean, he isnt going to rehab that soon...
so he is alarmed at being woken up...
Then Occupational Therapy came and he was just beat...
He had more diarrhea... so i guess we will see how the night goes and they will make a decision about new drug tomorrow
ugh... I feel so bad for him
Chris started to freak out a little bit and i calmed him down...
Isabel is back tonight.. love her
He is sleeping now..
I am gonna get going.. I have been here for 27 hours... time for home.. time for dinner and Rex and shower....
I pray her has a good night... maybe we will get a miracle and his diarrhea will stop tonight and tomorrow will be better.. new president new health? I hope...
Tonight he said "come here and make me not freak out" so i did.. gave him the pep talk... i begged him to sit up whenever he can and take deep breaths.. reminded him how high risk he is for stuff and pray he continues to be motivated... ugh... i told him to occupy himself more during day so that he sleeps easier at night..
but i just want the Graft Vs Host to settle down
He said something funny to me earlier...
He was saying how perfect i am.. something about having me in his life now and whatever.. anyways.. i wish i could quote it.. but he said something about perfect cheesiness... and said it was like something perfect and then adding cheese and melting it and it being so yummy and good..lol.. he said it was a food metaphor.. very cute.. but funny...
Oh, and Olivia is a child prodigy.. she plays the piano like a champ... girl is going to juliard one day... jeanie sent me a video of her playing piano yesterday and chris and i were both super impressed
Well, tomorrow is inauguration. i hope i can see it somewhere at work... not sure if i will get out to see chris at lunch.. so i am gonna try to see him in the morning before work...
I will pray extra hard tonight... there are a lot of people who need it... Jeanie's friends & everyone...
love you all
jenn
Monday, January 19, 2009
Friday, January 16, 2009
Friday... quick update
I went to work this morning.. Chris never called me back last night or during the night... so I assumed he got to sleep...
I called the nurse station in the morning to see how his night was and who his nurse was during the day today
Nicole, the Wed/Fri head nurse, who I love, spoke to me...
She said they would be sending in a psychiatrist soon to talk to him... he is clearly depressed and they want to see if they can manage it...
They are also sending in neurologists for the tremors...
Rose is his nurse today & I also talked to her... the morning was quiet. He only had 1 or 2 bowel movements but he also had them overnight
Nicole told me that they got him to sleep last night .. whatever drug they gave him worked
I am now learning that the did NOT put him on a new GVHD drug yesterday, even thats what i was told yesterday when I asked... what they gave him yesterday was a replacement for the cyclosporine... I keep getting told they are thinking of doing this.. they might do that.. blah blah blah.. and then when they add a drug, I ask for clarification and I cant even get the correct info
Rose told me someone else wanted to talk to me and she put Sharon on the phone... She had checked on Chris and he was sleeping.. she told me that she had seen all the doctors in there yesterday and Anne.. which I was aware of... but I dont understand why the nurse cant give me a reason why he is on a drug if its pretty simple...
I asked Sharon if she had heard about whether he was 100% the donor or not, and she said she heard Nancy saying that yesterday. It sounds like Dr Sedov was near her because he told her that that was not back yet. no final on the bone marrow biopsy yet. Sharon relayed that to me.. so now we are still waiting for that
The new drug is the drug he would have been sent home on (Cyclosporine is IV at the hospital.. they are sent home on an immunosuppressant... so thats not a huge deal... ) they made the change now because the cyclosporine might have been causing his recent tremors...
They also stopped the cymbalta a couple days ago because that also might have been causing tremors..
I got here after work by 530pm..... and found out that even though Nancy mentioned a new psychotic drug yesterday, he is indeed not on anything yet... they want to see how all the changes in meds work before adding yet another drug.... I understand.. it seems the tremors were putting him over the edge the last 2 days.. so if they can control those, he might not need any anti-depressant..
They added Neurotin (which he has taken before)--- should help the tremors since they are a neurological thing... and they changed his blood pressure med... he was only on it to slow down the heart rate since it was high during pre-transplant chemo.... but they changed it to a new one which could help with tremors...
He got a 3rd dose of remicade today (that weekly one that is for graft vd host.. to try to stop the diarrhea from the graft vs host in his GI tract)... So it looked like what Anne said Wednesday is what they are doing... waiting to see how this 3rd dose works before adding another graft vs host med...
Its frustrating because the nurses mentioned drug "such and such" and i cant keep track of them all.. so when they mentioned "oh i hear they might give him this" or "oh they are going to add another graft vs host drug sooner" and then i ask if it happens, i cant remember the name of the drug that was thrown at me.. and it sounds like there is also another anti-diarrhea med that is out there too.. so i am not sure why they are waiting.. but i guess thats good if they arent urgently adding more drugs...
Chris was in good spirits when I got here after work. He told em Dr Strair gave him a reality check and told him basically that he could stop treatment, give him dilaudid to make him zonked and sleep.. and let him die.... OR we could continue with the treatment to figure out the graft vs host and work on getting him better. Chris seems to have things back in perspective and chose to try that living route. Good...
I asked Rose if he had a lot of bowel movements and she said yes. She said it was watery and a lot... She wasnt his nurse for 2+ weeks so I have no idea what that means in comparison to the last few days... I didnt get very far with asking her for that info.. So Nicole looked up the day for me and said she saw 2 bowel movements at 11 and 12. Rose might not have charted the others after that, if there were more... but i think he had one around 730am when the shift was changing... its very frustrating because i dont know if they are remembering to chart them all even though the supposedly are.. and i cant get a clear answer on the amounts and better vs. worse because some nurses dont take care of him as often as others so i cannot gage.. ugh frustrating.. Liz & Nancy are back on Monday )off for the weekend
He was up for an hour talking to me and then started to dose. Which is good... Sleeping without suffering from discomfort is good
He also had a good day with physical thereapy.. they said they were impressed with his progress and he (with help) took some steps to the chair.. and they worked him out...
Yay!
I also suggested to Nicole that it might help his depression to get him out of the room even if he isnt walking.. maybe in a wheelchair around the halls.. she thought it was a good idea...
She said maybe Strair would let him go down to the lobby and sit by the fireplace for a while
So, I ran it by Chris and he seems happy about the idea.. maybe getting out of the confines of the 4 walls will help him a lot...
Too bad no one else thought of this.. they all do know he is going stir crazy from being in the room for over 2 months... Maybe I should be a shrink or therapist... sometimes i just dont understand why they dont take action quicker since they are much more experienced with people who are stuck in the hospital like him... I dont have time to think of solutions when I am busy working and running around and worrying about his health... ugh
anyways... he is sleeping now.. i am not sure how long i will stay.. i am relaxing with a book and my laptop.. and he is "ok" and sleeping... but i want to get here early tomorrow to try to see Dr Strair...
thats about it... his vitals are all good.. blood pressure good.. temp is 97.4... pulse ox is good.. he is sleeping soundly... very nice...
talk to you all later
xoxox jenn
I called the nurse station in the morning to see how his night was and who his nurse was during the day today
Nicole, the Wed/Fri head nurse, who I love, spoke to me...
She said they would be sending in a psychiatrist soon to talk to him... he is clearly depressed and they want to see if they can manage it...
They are also sending in neurologists for the tremors...
Rose is his nurse today & I also talked to her... the morning was quiet. He only had 1 or 2 bowel movements but he also had them overnight
Nicole told me that they got him to sleep last night .. whatever drug they gave him worked
I am now learning that the did NOT put him on a new GVHD drug yesterday, even thats what i was told yesterday when I asked... what they gave him yesterday was a replacement for the cyclosporine... I keep getting told they are thinking of doing this.. they might do that.. blah blah blah.. and then when they add a drug, I ask for clarification and I cant even get the correct info
Rose told me someone else wanted to talk to me and she put Sharon on the phone... She had checked on Chris and he was sleeping.. she told me that she had seen all the doctors in there yesterday and Anne.. which I was aware of... but I dont understand why the nurse cant give me a reason why he is on a drug if its pretty simple...
I asked Sharon if she had heard about whether he was 100% the donor or not, and she said she heard Nancy saying that yesterday. It sounds like Dr Sedov was near her because he told her that that was not back yet. no final on the bone marrow biopsy yet. Sharon relayed that to me.. so now we are still waiting for that
The new drug is the drug he would have been sent home on (Cyclosporine is IV at the hospital.. they are sent home on an immunosuppressant... so thats not a huge deal... ) they made the change now because the cyclosporine might have been causing his recent tremors...
They also stopped the cymbalta a couple days ago because that also might have been causing tremors..
I got here after work by 530pm..... and found out that even though Nancy mentioned a new psychotic drug yesterday, he is indeed not on anything yet... they want to see how all the changes in meds work before adding yet another drug.... I understand.. it seems the tremors were putting him over the edge the last 2 days.. so if they can control those, he might not need any anti-depressant..
They added Neurotin (which he has taken before)--- should help the tremors since they are a neurological thing... and they changed his blood pressure med... he was only on it to slow down the heart rate since it was high during pre-transplant chemo.... but they changed it to a new one which could help with tremors...
He got a 3rd dose of remicade today (that weekly one that is for graft vd host.. to try to stop the diarrhea from the graft vs host in his GI tract)... So it looked like what Anne said Wednesday is what they are doing... waiting to see how this 3rd dose works before adding another graft vs host med...
Its frustrating because the nurses mentioned drug "such and such" and i cant keep track of them all.. so when they mentioned "oh i hear they might give him this" or "oh they are going to add another graft vs host drug sooner" and then i ask if it happens, i cant remember the name of the drug that was thrown at me.. and it sounds like there is also another anti-diarrhea med that is out there too.. so i am not sure why they are waiting.. but i guess thats good if they arent urgently adding more drugs...
Chris was in good spirits when I got here after work. He told em Dr Strair gave him a reality check and told him basically that he could stop treatment, give him dilaudid to make him zonked and sleep.. and let him die.... OR we could continue with the treatment to figure out the graft vs host and work on getting him better. Chris seems to have things back in perspective and chose to try that living route. Good...
I asked Rose if he had a lot of bowel movements and she said yes. She said it was watery and a lot... She wasnt his nurse for 2+ weeks so I have no idea what that means in comparison to the last few days... I didnt get very far with asking her for that info.. So Nicole looked up the day for me and said she saw 2 bowel movements at 11 and 12. Rose might not have charted the others after that, if there were more... but i think he had one around 730am when the shift was changing... its very frustrating because i dont know if they are remembering to chart them all even though the supposedly are.. and i cant get a clear answer on the amounts and better vs. worse because some nurses dont take care of him as often as others so i cannot gage.. ugh frustrating.. Liz & Nancy are back on Monday )off for the weekend
He was up for an hour talking to me and then started to dose. Which is good... Sleeping without suffering from discomfort is good
He also had a good day with physical thereapy.. they said they were impressed with his progress and he (with help) took some steps to the chair.. and they worked him out...
Yay!
I also suggested to Nicole that it might help his depression to get him out of the room even if he isnt walking.. maybe in a wheelchair around the halls.. she thought it was a good idea...
She said maybe Strair would let him go down to the lobby and sit by the fireplace for a while
So, I ran it by Chris and he seems happy about the idea.. maybe getting out of the confines of the 4 walls will help him a lot...
Too bad no one else thought of this.. they all do know he is going stir crazy from being in the room for over 2 months... Maybe I should be a shrink or therapist... sometimes i just dont understand why they dont take action quicker since they are much more experienced with people who are stuck in the hospital like him... I dont have time to think of solutions when I am busy working and running around and worrying about his health... ugh
anyways... he is sleeping now.. i am not sure how long i will stay.. i am relaxing with a book and my laptop.. and he is "ok" and sleeping... but i want to get here early tomorrow to try to see Dr Strair...
thats about it... his vitals are all good.. blood pressure good.. temp is 97.4... pulse ox is good.. he is sleeping soundly... very nice...
talk to you all later
xoxox jenn
Wednesday, January 14, 2009
3 day update. Chris tells me to go home so we can both sleep.. but called me at 1130pm very sad :(
OK...
So I went to the hospital Monday during my lunch. Chris tells me that the doc is talking about rehab before he goes home... physical therapy people came and evaluated him...
They feel he needs to be a lot stronger before he is home.. they want to make sure he is walking around before he goes home so he isnt in bed all day..
Makes sense
However, I am confused because he is supposed to be in such a sterile environment.. how can they just put him in rehab?
Well, anyways, I decide I will ask all those questions later...
After work, Chris was up and feeling good... We hung out until late at night and things were looking good.. he told me he wanted to help me go through all the mail and bills that have piled up and that we would go thru them after work tuesday... So i mentioned maybe sleeping there tuesday night... he was down with that..
But listen to this... Physical therapy never came Monday at all... now i am mad... how can you say he needs it so bad. needs rehab.. and skip him on monday.. bullshit
Karen, his nurse from Sun/Mon says she will mention to Mary Kate...
So, now i need to sleep there tuesday night .....I also wanted to be able to catch the doc in the next morning and ask more about whats going on and timeline and all that...
So, Tuesday comes.. I called Chris in the morning and he was feeling good... he had a good night... no bowel movements monday night.. so it was only 2 in 24 hours...
I told him i was running late and would see him at lunch and then sleep there like we discussed...
He sounded great...
I got there at lunch and Mary Kate sees me and tells me that she talked to Elena, the case manager nurse, and that they are working on making sure physical therapy is never skipped again.. whew.. finally
Chris is cool.. says that the therapist came to see him and would be back at 130.. i was gonna leave to go back to work by 115...
he is in a good mood... I went back to work
After work, i ran home to shower and grab clothes for overnight and for wednesday work.
I get to the hospital.. my brother had visited and told me chris was having bad tremors :(
He is obviously not wanting to go thru bills or much of anything...
He falls asleep and I read and eventually went to bed
Overnight, he had a few bowel movements ;( ugh
He is not happy in the morning because he didnt sleep well and because he has the tremors
Wednesday before leaving for work, I saw John the social worker and Elena... John told us he would work on seeing if they could help expedite Chris's long term disability application... he desperately needs that... and Elena worked out physical therapy consistancy
I went to work
After work Wednesday, I went to see him
Karen the nurse tells me he has 4 bowel movements and some blood in them :(
This means there is bleeding somewhere in his GI tract... but they tested for clotting factor and he is ok
There is talk of a new Graft Vs Host drug
They stopped the cyclosporine and the cymbalta (both could be causing tremors)
Chris was feeling sleepy so I went home by 930pm...
Thursday morning I wake up (today) and there was snow on the ground and it is still snowing
I called Chris and he answered. I was driving to work and it was taking me forever. I said i was just gonna go to work since the roads were bad...
Nancy is his nurse ;)
I talked to Nancy during the day and he only had a lil blood today and they would be starting a new graft vs host drug... and a new psychotic drug :( ugh.. but he is obviously depressed right now.... he wants to feel better.. he wants to go home
He did do physical therapy.. so thats good
I went to see him after work today and my parents were also on their way to visit
He told me when I got there (in a groggy voice) "you should just go home and sleep.. Dr Strair gave me a reprieve" i was confused so I went to talk to Nancy..
She told me he just wanted a break.. wants to sleep... ugh
So, Strair said ok.. let him have benedryl and ativan... so he chatted with my parent for maybe 10 minutes and told us to go home... i was sad cus i dont get to see him all day.. but its ok... i just wish i could be there to hug him whenever he wakes.. so its very hard.. i need sleep too.. but he's been down lately and he asks for hugs often.. i know he wants them... awwww
Ativan is making him a bit loopy but as long as he sleeps
Nancy told me that they will reevaluate.. but he needs an immunosuppresant... so cyclosporine either needs to go back on or be replaced
I think he had 3 bowel movements for nancy all day
Nancy also said someone told her today that he is 100% the donor, but she cannot remember who... so now i need to ask to make sure that is correct
Anywyas, Chris asks for a hug.. my parents leave.. i leave...
I just want the diarreha to stop... and of cours,e the blood in there too ;(
poor chris...
So, its 11:30pm tonight and Chris calls my cell phone... he is telling me to call Dr Strair... he is practically begging me.. saying he needs to be able to sleep.. he is laying in poop (had an accident) and i hear his machines beeping.. I asked if he called the bell and he said yes...
I am so scared.. i feel so bad for him.. he is telling me he needs help
I ask him to hang in there.. tell him i love him... tell him we are almost there.. remind him i am proud of him and that he told me to go home... i dont feel guilty but i feel so naturally bad that i am not there..
he tells me he is trying .. he still wants me to call Strair...
I called the nurses from the other phone and Tracy tells me that the fellow, Dr Lee was in there 15 minutes ago and that they are getting a new drug from pharmacy to help him sleep...
she is going in now.. and she tells me they just had an emergency on the floor...
I really wish they would have 5 nurses at night instead of 4... it would help so much
I go back to Chris and he is telling me he cannot move... i am trying to ask him what part of his body and he isnt answering me.. he is just talking in general.. ativan makes you sleepy and out of it... so he is awake but not totally
I had him on the phone for 12 minutes and then i was saying (as I heard him telling tracey he was on the phone with me) "Jenn let me call you back"
Its been 45 minutes since we hung up so I am hoping he is sleeping and that is why he hasnt called...
poor guy...
I pray this diarrhea stops so he can feel better...
Graft vs Host is so scary
the new med says its also used to prevent rejection with kidney transplants
I want him to be better and go to rehab and focus on getting his strength back.. I feel so bad for Chris... getting rid of this diarhea will make him feel more normal and more like he is gonna get out soon....
Hearing from him tonight broke my heart... He seems to be with me.. he is telling me he is hanging in there.. but acknowledging that its very hard for him right now... he is still fighting but its so hard
please say a prayer for him...
Jeanie & Brian's friends lost their little boy (6 yrs old) today... he died suddenly and they need our prayers too... its a reminder that we dont have total control over our own lives and they wont get over this ever...
Since so many of you pray for us, for Chris, I ask you to remember his family today....
Love you all
Jenn
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
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
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