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