Hi friends...
I cannot believe its been more than 5 months since I lost Chris...
Life just is not the same.... Sad moments pop up out of nowhere... And, I often feel that Chris sends me in certain directions... guidance i guess...
Anyways... Every year, the Leukemia & Lymphoma Society (LLS) has a walk... It is called the "Light the Night Walk" and I am a team captain...
The walk is Saturday October 3rd and our team name is GO BIG FOR CHRIS WAXMONSKY
So, far I have 25 walkers plus 5 of my walkers children...
I am very excited.. but would love more walkers...
Also, I have set a team goal of $2500 to fundraise... It is such an important cause and any donations would be greatly appreciated...
Please forward the website to your friends and family.
And feel free to contact me with any questions
I have flyers for those of you who are interested in sending them out or seeing it
The website is
http://pages.lightthenight.org/nnj/Westfld09/GoBigForChrisWaxmonsky
I am still working on the non for profit organization
Talk to you all soon
Jenn
Friday, July 24, 2009
Thursday, March 12, 2009
Its Been A Month...
I cannot believe tomorrow will be one month since Chris left this earth...
In some ways, it feels like yesterday... and in some ways it feels like a very long time... I guess that is normal...
I mean, my regular Chris left me weeks before he passed.. and in some ways, he wasnt himself for even longer...
But in other ways, I still want to tell him things... Its the strangest emotion imaginable...
I have been to St Gertrude to visit his grave a few times already. Unfortunately have had other relatives' funerals in the last month too:(
I want to share with you some things that have floated around in my mind since February 13th... I have been asked by an unbelieveable amount of people to continue updating the blog. I understand.. but I am also not too sure what I would say. My feelings are sometimes pretty private... and I am not sure too many people want to hear about my life...
But, I do want to keep Chris's memory alive.
I plan to stay very active in bone marrow donor awareness, cure for leukemia research support, stem cell research advocacy (including political involvement), fundraising, etc. I want to find a way to make my experience beneficial for others... And, I am still figuring out where i want to focus my time and efforts.
It is too soon for that detailed plan...
But, when I do figure it out, I will know its right. I imagine hearing Chris say "Sounds Like A Plan" (getting teary)
Never before all of this happened to Chris could I have ever imagined what its like to have leukemia, or be in a hospital for more than half of 9 months... And although cancer is not cool no matter what kind, this is one that is pretty damn awful.. pretty rotten.. and even for those who beat it, gives many people terrible chronic problems and secondary cancers... Leukemia sucks and more people should be able to live longer after diagnosis...
I plan to be a team leader in October for the Light the Night Walk. Its an annual fundraising walk sponsored by the Lymphoma and Leukemia Society. Stay tuned.. I will be hitting you all up for donations and walking with me...
I also plan to start a NFP for Chris's memory which would be soley to raise money for the Cancer Institute of NJ and the National Bone Marrow Donor Foundation. Without the research done at the Cancer Institute, people like Chris wouldnt have even had a fighting change 10 years ago- there is much more to be done...
I am very very sad that I lost my best friend.. my soulmate. I did not want this to be what happened.. at all. So, I ask myself why I seem ok these days. When I say "OK" I do not mean a regular ok.. but I only cry once a day.. not every hour. I thought something was wrong with me... but the only thing I can come up with is that I am a lot stronger than I ever thought. And, Chris gave me that strength... I gave him the support he needed to fight like the champion he was. He made me so proud and he often told me how proud he was of me. No one can ever explain God's choices. Father Anthony from my church told me on the day Chris died, that God takes only the best... And I truly believe that. Chris was truly one of the best men I ever met. And, the alternative is thinking that there is no God.. but then where would my reasoning be? no where. Plus, when precious innocent children die, like Jeanie & Brian's friends' son Mychal, what else can you think? Angels. I cannot imagine being his mother, nor telling her that he is an angel... Its not right... And, maybe I comprehend the concept more easily because I have faced Chris's death for 9 months.. and have found more faith than ever.. but its still just not right. And, I pray one day we will find out why these things happen...
Chris's passing and Mychal's passing made me talk to my mom about losing her sister when she was 9. I never in 29 years ever talked to her about it (other than the surface facts) and my mom told me personal things I never knew before. Life is really really precious.. thats all I have to say...
If you told me a year ago that God takes the best... I would have laughed.. I would have been unable to relate. I dont know if the pre-Chris Jenn would have ever understood the things I understand now... But, Its been my life. Its part of me.
I am a better person for having Chris in my life. He showed me how a girl deserves to be treated. He gave when he could have been just asking... He cared when everyone cared for him. He loved like no other... and thats a true hero.. he was a hero on September 11th when he was at Ground Zero, but he was a hero in spririt, in who he was...
Chris made it very clear to me that if anything ever happened to him, that he would not want me to stop my life. He said he loved me more than life itself but that I deserve a good life. Of course, Chris also told me he wasnt going anywhere.. And I hoped he was right...
With Chris's journey, I have seen many silver linings. I cannot believe the amount of people who have read my blog. Oh my.. just when I thought I would be far far away from people who knew i was mourning, I would be approached by practical strangers telling me how touched they were by the story.. It was weird at first.. but now I am touched too... I dont know where i found the strength and courage to be as ok as possible for 9 months.. but I did.. and I hope our story can help others in their journeys. And, I think often that maybe I would want to lead support groups for young loved ones.
Silver linings are all over the place. People dont take life for granted after knowing me and Chris. People appreciate each other more. I have learned that mutual unconditional love is a very beautiful important thing. If Chris's illness had made things really rough for years, it was going to be ok... If it meant living in a double wide trailor in Alabama, it would be ok. Chris would be laughing at me right now.. He would laugh and roll his eyes at my double wide references.. but he used to promote modular homes.. so whatever.. lol
Silver linings.. I met amazing giving oncology nurses and ICU nurses.. new friends... people with amazing hearts. Chris truly loved and appreciated his doctors and nurses and techs.. I have a new extended Waxmonsky family.. I will have Waxmonsky brothers forever.. for as long as they will have me :)
And, a Waxmonsky Pop. Chris was extremely happy to have reunited with his dad during this terrible time. Do silver linings make everything ok? Nope.. Things are better in some ways for all sorts of reasons, but it doesnt make what happened to Chris fair or ok. I have Sharon, our lovely chaplain in my life.. and although I thought she would be at my church for a wedding, it was instead Chris's funeral... And, Chris was probably smiling the whole time. I had bagpipes at his funeral. he LOVED bagpipes.. in fact, he has worn a kilt and been to Scotland... and I hope to visit Scotland one day to see what he loved so much
I guess because we had so many ups and downs during his illness, I have had to face possibly losing him so many times and after watching him fight so hard, the faith I had found was there... It wasnt the miracle I asked God for.. but they say some of God's greatest gifts are unanswered prayers.... Right? I dont know... If you told me that 2 months ago I woulda said no way... God needs to answer my prayers.. but I have to believe God has better things coming my way. I thought divorce 4 years ago was so awful... and this has taught me that when you can have such love from someone like Chris... life is too short to be worried about people who dont treat you as perfect as you treat them.. Life is precious.. love like no one is watching and do what you want to do...
Chris had a pretty rough life.. Didnt get too many breaks as many of you know. He had no mother in his life since he was 12... and along with other disasters, had a lot of bad luck. He was prone to accidents and had an unsuccessful marriage. Maybe God needed Chris up there and if thats the case, I feel blessed that I got to share a very special year with him. He taught me a lot about love, life and relationships. his experiences taught us a lot too. And, I am glad I was there for him- we were placed in each other's lives. And, I think it sucks, in plain English, that I met "Mr Perfect" and had him taken from me... but if my life is going in another direction, I accept it, and I think my angel is going to send good things my way. I hope the "Plan" is that I will find love again, the kind that Chris showed me exists... I now have an angel .. my own personal angel... So i am behaving!
I visited the hospital 2 weeks ago. Chris had asked me to buy the head nurse Mary Kate a gift (she is due March 24th or so). I had the gift in January and never got to give it to her.. so I brought it to her and my mom came with me. It was strangely ok being there. They were like our family for a long time and its almost comforting to see them.. They gave us as much of a home as possible when we couldnt be home... I got to see Tanya ;) And Jen and other special people..
I actually have a letter I havent finished yet to all the nurses with special memories but I havent gotten myself together enough to finish it and send it...
What gets to me the most is not the sadness of me losing Chris, but the thoughts of Chris loving life, the sweetness he added to my life and memories of him being silly... I see things he loved and I smile or tear up, depending on the mood...
I torture myself with cds I played while he was dying. Our songs.. The song he sang to me.
If you want to join me in my sadness and memory of him, play YOU SAVE ME by Kenny Chesney.. That was how he felt about me..
Or, WHO YOU'D BE TODAY by Kenny Chesney about dying too young..
I STILL MISS YOU by Keith Anderson.. Yea, I can relate to that one...
HOME by Daughtry...
Sometimes they help me though... Its strange...
I am going to be seeing Kenny soon.. never saw him live.. and I want to... Chris is supposedly watching me, so I should atleast bring him to a concert..
Chris always said what great friends I have and he was sooo right. I am soo blessed... I am surrounded by girls who are as good as sisters.. and I have met even more great people in the last month...
One of my closest friends from high school Christine S lost her mom days before Chris died... Our family friends: Kathy, Eileen, and Nancy lost their mom 2 weeks ago.. and my godmother lost her dad 2 weeks ago. I think Chris has met them already... Jeanie's little 2 yr old cousin got diagnosed with childhood leukemia (ALL) right after Chris died.. Please pray for little Logan...
I am so happy that I hear from Tom, Brian, Lew, Matt, and Danny regularly... I love those guys and what makes me sad is that Chris loved them sooo much and wanted to badly to have his family back.. Chris would have been the best dad... He took care of his brothers when he was younger when mom wasnt around.. and he loved kids ... was a natural with them... not a typical guy... He loved Olivia, Haleigh, Dylan, Ben as much as I do... He loved my friends and family genuinely...
If Rex is getting into trouble, I swear Chris is taunting him.. I wonder where he is everyday.. but I am ok. I get sad when I remember silly things like how he wanted to try eating strawberries after transplant cus he thought maybe his allergy went away... or how when he couldnt walk on his own, he would stand up with my help in the hospital and hold onto me and hug me.. and how one time he joked that we were dancing and wiggled his butt a little... Or when I think about how he never got to one last Devils game ... or how he couldnt eat for a few week and just wanted some water or coffee so bad... Those are the things that really get to me... Or how he wanted to just go home and lay in his bed. When I think about his little requests and wants I could cry.
I am finally almost done with thank you cards... and I have CDs of his fave music for those of you who want a copy...
For those of you who want to donate in his memory, we ask for donations to be made to the Cancer Institute of NJ. Little Albany Street. You can make donations in his name on the website or send me a check and I can take care of it for you....
Thanks to those of you who did donate already
I also copied the Blog in its entirity onto a Word doc for easier reading.. Its 160 pages or so!
Lastly, when Sharon was preparing for the Eulogy, I sent her a bunch of stuff about Chris to help her with compiling... And, I have copied and pasted a bunch of what I said below: If its repetitive, I am sorry but I just dont have it in me to do any more editing...
I will never forget meeting Chris in East Windsor when I was dog sitting... My headlight was out, as many of you know... and when I got into a car accident last week (and broke my toes) the bumper was damaged but the headlights were fine. It made me chuckle... He replaced all the lights and they were untouched in the accident
Ever since then, we would say "You had me since 'your headlight is out'" instead of "you had me from hello"
Chris had a bunch of sayings he used often...
"Workin on it" "Sounds like a plan" "lets do it" Go big or go home"
All of these remind me of him whenever I hear them...
When he was just wanting to sleep.. nurses would ask him if he was ready for meds or whatever and he would be a trooper and say "lets do it" or when he would be trying to get himself up ... "workin on it"
Lets not forget the "No holes in my colon, dear jenny, dear jenny" song.. Back in November when Chris was in ICU before we even knew if he would get to transplant.. he was so excited with the catscan results.. and i had no idea there was a hole in my bucket song... chris was sooo cute when he sang it...
Chris always told me I leaked when he saw me crying... so whenever i got leaky in front of him, i could play it off as being over emotional and being sad that he wasn't home yet... but really, i was scared to death and heartbroken watching him feel so crappy
.. I leaked a lot these last couple weeks...
When I met Chris.. before he was sick... he told me he hadnt seen most of his family in 10 years.. and yet whenever he spoke of them, i knew how dearly he missed them and loved them. He told me how he took care of the little ones since he was the oldest of 7...
When Chris was first diagnosed, he was at JFK Hospital, and he felt like maybe it would help bring his family together and cause some good. Little did we know how much sicker he would really be
He was so strong. when he came to Robert Wood, he was told me was a very unique case.... and that he would be in medical books... he was like "i want to be interviewed. if i can help others, that is great"
I dont know where he found his strength.. but he was my rock and therefore i was able to he his even though i leak a lot ;)
Chris was obsessed with technology
He loved fixing computers, building them, fixing things in my house, with my tv, etc...
He was a part of a radio network-- he would program his radios and scanners and listen to the emergencies in nearby townships.. and i honestly started liking it too.. i kinda miss those calls
Chris must have switched his cell phone model 6 times in the last year... he drove me nuts
My parents adored Chris as much as he adored them... As soon as they found out he was sick, they let him move in with us... My mom loved her like her own son -- another Chris, since i already have a brother chris
Before Chris was sick, he was moving and needed a home for Rex the cat. My dad was alergic, but agreed to try it out... and just like a blessing, no allergy... Chris told me he thought it would make my parents happier and closer.. and he has them wrapped around his paws... Chris was right
I was allergic too when i first met chris.. but after a couple months of suffering, my allergy went away too... Funny how things happen
My dad, post Budweiser employment, told Chris he needed to get better so they could make beer at home together... Chris said "sounds like a plan" Chris was one guy my parents not only loved, but loved so unconditionally and quickly
When Chris was in ICU briefly after transplant on Christmas Eve, Chris had been given a dose of his favorite dilaudid, so was quite groggy.. but when he woke, we asked if he knew where he was and who were were ... when he looks at me he says "my other half" and when he sees my mom he says "mom" and its not the first time ... I really feel God brought him to our family on purpose...
My brother and Chris were soulmates too... brothers really... they hit it off the minute they met.
Early on, we all went to dinner and I was the 3rd wheel..
Chris and Chris were bonding over all sorts of similarities.. but when they talked about food, my brother asked if he liked Cheese.. and when the answer was yes and they both agreed how much they loved it, the deal was sealed.. Chris approved of Chris and vice versa....
Rex is my little piece of Chris that he left for me.. Even though we didn't have any kids, I will always think of Chris when I see Rex... as strange as it might seem to some...
When Chris was feeling better in January, he couldn't walk yet but he was so tired of being in the room, so we got a wheelchair, bundled him up and i took him for rides a few times in the hospital... We rolled over to the childrens hospital and all over.. by the fireplace in the lobby..we had our "dates" with hot tea when we escaped the bone marrow unit for our rides... I am sooo happy we were able to do that... so glad... i got him out of that room.. not knowing them that that would be our last dates...
In the childrens hospital, we would put the wheelchair under the giraffe who would tell you how tall you are... Chris wanted to get measured everytime .. our fun
Chris installed his TIVO on 2 of the tvs in our house when he moved in.. and now its not working right... I already need him and he isnt here :( Whenever I watch his sports show "Around the Horn" or hear scanner radios, i will think of him
Oh, a special special outing for us was June 5th.. the night before chris was in the ER finding out how sick he was... we went to a Tim McGraw concert.... We had an amazing time... and little did we know it would really be our last date before all the chaos... we had dates after getting sick, but Chris just never felt like himself.... Tim sings mine and Chris's song "My Best Friend" but he also sings "Live Like you were Dying" and we rocked out to it that night... The next day, it was so real... Chris still wanted to listen to it...
I sang "My Best Friend" to Chris in his last hours a few times... Chris knew i cant sing... and I am sure he was laughing inside when he heard me.. but the words were ours... "we just get closer, fall in love all over, everytime I look at you... I dont know where I'd be, without you hear with me... Life with you makes perfect sense... My Best friend"
There is the story from last week about Chris waking up a couple days after surgery telling me to take $50 to church... and I did... and the gospel was about healing... Mark 1:29-39
Or, when he was not intubated anymore a day after surgery.... and me and mom visited... he was pretty ok.. talking in between dosing off... and when we were leaving he was ok with it.. but asked me for "one little favor before you leave for the night..." I was excited.. i thought he was asking for a hug or something... but no... he asked for a shot of his favorite stuff... dilaudid.... sorta funny... as out of it as he was.. he remembered the drug that made him feel good.. too good... poor guy.. he was probably pretty miserable.. kinda wish we gave him one last shot of his favorite stuff :(
And when it came to Chris's strengh.. his "go big or go home" -- i would be so upset everytime there was a new bigger obstable.. and chris would just say "hey i am going big" He would even say "i dont ask God Why... I just ask Him what next?"
I think by January he might have been done with asking what next.... but he fought ...
My best friend and I visited Chris also a couple days after surgery and he was still confused about his surgery.. didn't remember going to ICU so was asking to go back to 4north... and i reminded him he had surgery... I was telling him to hang in there and that he could punch anyone he wanted when he got out of there.. so he took his fist and made punching motions... that was only a week ago or less... and he was still able to be himself...
Chris gave me more love than anyone can imagine... I wouldn't trade this time with him for the world... he set the bar really high... He showed me what it feels like to be number 1.. a princess... he was truly my rock and i was his... what we had was beyond special.. we wanted to make a difference together... and he told me almost every day that he woulda been in a bar if it werent for me.. he was fighting for us.. and it kept me strong.... Since we met he would say lots of sweet things to me.. but the one i will always remember and the one i said to him many many time before he died was "I love you to pieces..." i will always and forever have a huge place in my heart for my Chris... always...
Also he would get a kick out of my mom's stories.. she would call me to tell me something that Rex was doing and it became a very frequent event.... so he eventually called these stories the "Loretta's Daily REX REPORT" He really enjoyed hearing about what Rex was up to ... and glad he was so taken care of ... even though he said "he's getting toooo spoiled" He did tell me a couple weeks ago that he really missed him
All these months being scared of losing Chris.. it was the scariest thought imaginable... It made me sad... obviously... terrified... this was the guy i could see a perfect future with... he wanted the same things... he was truly my other half... sounds so cliche, but he completed me... i dont know how i could possibly ever find someone as perfect...
Anyways... recently (and even the whole time i was with Chris) I hear friends and family talk about their marriages.. complain about their boyfriends and husbands... and I always thought "wow... Chris is just not like that... Chris is so in-tune with my needs... never hesitated to put me first..treated my best friends like his best friends and it came so naturally to my family to call him theirs." and it sounds so cheesey... but i know how other relationships start... guys try to impress the girl.. but Chris was so genuine... had a natural nurturing personality.. lots of morals... wanted to make a difference in the world with me...
The day before the wake, I was running around doing errands -- getting prints made of Chris for the wake-- etc... and i felt a terrible heaviness in my heart... and i thought about everything... how perfect we were and what SHOULD HAVE BEEN... and how incredible.. and then i thought... gosh.. he was too good to be true... God needed him ... Ever since Chris was diagnosed, Chris and I had a little theme.. "You cannot plan.. just do things that make us happy... you have to... never know whats gonna happen" So, obviously this was God's plan... and Chris is probably ok with this now... he always said "sounds like a plan" -- (although I am sure he misses me and is sad that I am so lost right now)
its so hard for me to say that because I want Chris.. I wanted God to wait longer for Chris and I will be sad for a long time.. but then I think ... you know what... Chris surely was "the best" that Fr Anthony mentioned.. God needs him... and I got the best gift... God brought Chris into my life before taking him.. I got to be treated like a princess by the perfect guy... I am the luckiest girl in the world... If he was gonna have a great relationship and mountains of love before he died, I am glad it was me... and I know Chris was just needed upstairs... but I am blessed because he is mine.. and I have an angel to talk to and guide me through every day of the rest of my life....
And now I am having trouble seeing my monitor because I am crying... and i will certainly have a hard time believing what i just wrote while I miss him terribly over the next "who knows how long"-- but I do believe it and I know how great Chris was... And my experience with him taught me and those around me so much.. he touched so many people... My life is better because of him... i just wanted my better life to include him... I only hope that those around me are surrounded by as much love as Chris gave me...
Thats all I got... Love you all... Thanks
In some ways, it feels like yesterday... and in some ways it feels like a very long time... I guess that is normal...
I mean, my regular Chris left me weeks before he passed.. and in some ways, he wasnt himself for even longer...
But in other ways, I still want to tell him things... Its the strangest emotion imaginable...
I have been to St Gertrude to visit his grave a few times already. Unfortunately have had other relatives' funerals in the last month too:(
I want to share with you some things that have floated around in my mind since February 13th... I have been asked by an unbelieveable amount of people to continue updating the blog. I understand.. but I am also not too sure what I would say. My feelings are sometimes pretty private... and I am not sure too many people want to hear about my life...
But, I do want to keep Chris's memory alive.
I plan to stay very active in bone marrow donor awareness, cure for leukemia research support, stem cell research advocacy (including political involvement), fundraising, etc. I want to find a way to make my experience beneficial for others... And, I am still figuring out where i want to focus my time and efforts.
It is too soon for that detailed plan...
But, when I do figure it out, I will know its right. I imagine hearing Chris say "Sounds Like A Plan" (getting teary)
Never before all of this happened to Chris could I have ever imagined what its like to have leukemia, or be in a hospital for more than half of 9 months... And although cancer is not cool no matter what kind, this is one that is pretty damn awful.. pretty rotten.. and even for those who beat it, gives many people terrible chronic problems and secondary cancers... Leukemia sucks and more people should be able to live longer after diagnosis...
I plan to be a team leader in October for the Light the Night Walk. Its an annual fundraising walk sponsored by the Lymphoma and Leukemia Society. Stay tuned.. I will be hitting you all up for donations and walking with me...
I also plan to start a NFP for Chris's memory which would be soley to raise money for the Cancer Institute of NJ and the National Bone Marrow Donor Foundation. Without the research done at the Cancer Institute, people like Chris wouldnt have even had a fighting change 10 years ago- there is much more to be done...
I am very very sad that I lost my best friend.. my soulmate. I did not want this to be what happened.. at all. So, I ask myself why I seem ok these days. When I say "OK" I do not mean a regular ok.. but I only cry once a day.. not every hour. I thought something was wrong with me... but the only thing I can come up with is that I am a lot stronger than I ever thought. And, Chris gave me that strength... I gave him the support he needed to fight like the champion he was. He made me so proud and he often told me how proud he was of me. No one can ever explain God's choices. Father Anthony from my church told me on the day Chris died, that God takes only the best... And I truly believe that. Chris was truly one of the best men I ever met. And, the alternative is thinking that there is no God.. but then where would my reasoning be? no where. Plus, when precious innocent children die, like Jeanie & Brian's friends' son Mychal, what else can you think? Angels. I cannot imagine being his mother, nor telling her that he is an angel... Its not right... And, maybe I comprehend the concept more easily because I have faced Chris's death for 9 months.. and have found more faith than ever.. but its still just not right. And, I pray one day we will find out why these things happen...
Chris's passing and Mychal's passing made me talk to my mom about losing her sister when she was 9. I never in 29 years ever talked to her about it (other than the surface facts) and my mom told me personal things I never knew before. Life is really really precious.. thats all I have to say...
If you told me a year ago that God takes the best... I would have laughed.. I would have been unable to relate. I dont know if the pre-Chris Jenn would have ever understood the things I understand now... But, Its been my life. Its part of me.
I am a better person for having Chris in my life. He showed me how a girl deserves to be treated. He gave when he could have been just asking... He cared when everyone cared for him. He loved like no other... and thats a true hero.. he was a hero on September 11th when he was at Ground Zero, but he was a hero in spririt, in who he was...
Chris made it very clear to me that if anything ever happened to him, that he would not want me to stop my life. He said he loved me more than life itself but that I deserve a good life. Of course, Chris also told me he wasnt going anywhere.. And I hoped he was right...
With Chris's journey, I have seen many silver linings. I cannot believe the amount of people who have read my blog. Oh my.. just when I thought I would be far far away from people who knew i was mourning, I would be approached by practical strangers telling me how touched they were by the story.. It was weird at first.. but now I am touched too... I dont know where i found the strength and courage to be as ok as possible for 9 months.. but I did.. and I hope our story can help others in their journeys. And, I think often that maybe I would want to lead support groups for young loved ones.
Silver linings are all over the place. People dont take life for granted after knowing me and Chris. People appreciate each other more. I have learned that mutual unconditional love is a very beautiful important thing. If Chris's illness had made things really rough for years, it was going to be ok... If it meant living in a double wide trailor in Alabama, it would be ok. Chris would be laughing at me right now.. He would laugh and roll his eyes at my double wide references.. but he used to promote modular homes.. so whatever.. lol
Silver linings.. I met amazing giving oncology nurses and ICU nurses.. new friends... people with amazing hearts. Chris truly loved and appreciated his doctors and nurses and techs.. I have a new extended Waxmonsky family.. I will have Waxmonsky brothers forever.. for as long as they will have me :)
And, a Waxmonsky Pop. Chris was extremely happy to have reunited with his dad during this terrible time. Do silver linings make everything ok? Nope.. Things are better in some ways for all sorts of reasons, but it doesnt make what happened to Chris fair or ok. I have Sharon, our lovely chaplain in my life.. and although I thought she would be at my church for a wedding, it was instead Chris's funeral... And, Chris was probably smiling the whole time. I had bagpipes at his funeral. he LOVED bagpipes.. in fact, he has worn a kilt and been to Scotland... and I hope to visit Scotland one day to see what he loved so much
I guess because we had so many ups and downs during his illness, I have had to face possibly losing him so many times and after watching him fight so hard, the faith I had found was there... It wasnt the miracle I asked God for.. but they say some of God's greatest gifts are unanswered prayers.... Right? I dont know... If you told me that 2 months ago I woulda said no way... God needs to answer my prayers.. but I have to believe God has better things coming my way. I thought divorce 4 years ago was so awful... and this has taught me that when you can have such love from someone like Chris... life is too short to be worried about people who dont treat you as perfect as you treat them.. Life is precious.. love like no one is watching and do what you want to do...
Chris had a pretty rough life.. Didnt get too many breaks as many of you know. He had no mother in his life since he was 12... and along with other disasters, had a lot of bad luck. He was prone to accidents and had an unsuccessful marriage. Maybe God needed Chris up there and if thats the case, I feel blessed that I got to share a very special year with him. He taught me a lot about love, life and relationships. his experiences taught us a lot too. And, I am glad I was there for him- we were placed in each other's lives. And, I think it sucks, in plain English, that I met "Mr Perfect" and had him taken from me... but if my life is going in another direction, I accept it, and I think my angel is going to send good things my way. I hope the "Plan" is that I will find love again, the kind that Chris showed me exists... I now have an angel .. my own personal angel... So i am behaving!
I visited the hospital 2 weeks ago. Chris had asked me to buy the head nurse Mary Kate a gift (she is due March 24th or so). I had the gift in January and never got to give it to her.. so I brought it to her and my mom came with me. It was strangely ok being there. They were like our family for a long time and its almost comforting to see them.. They gave us as much of a home as possible when we couldnt be home... I got to see Tanya ;) And Jen and other special people..
I actually have a letter I havent finished yet to all the nurses with special memories but I havent gotten myself together enough to finish it and send it...
What gets to me the most is not the sadness of me losing Chris, but the thoughts of Chris loving life, the sweetness he added to my life and memories of him being silly... I see things he loved and I smile or tear up, depending on the mood...
I torture myself with cds I played while he was dying. Our songs.. The song he sang to me.
If you want to join me in my sadness and memory of him, play YOU SAVE ME by Kenny Chesney.. That was how he felt about me..
Or, WHO YOU'D BE TODAY by Kenny Chesney about dying too young..
I STILL MISS YOU by Keith Anderson.. Yea, I can relate to that one...
HOME by Daughtry...
Sometimes they help me though... Its strange...
I am going to be seeing Kenny soon.. never saw him live.. and I want to... Chris is supposedly watching me, so I should atleast bring him to a concert..
Chris always said what great friends I have and he was sooo right. I am soo blessed... I am surrounded by girls who are as good as sisters.. and I have met even more great people in the last month...
One of my closest friends from high school Christine S lost her mom days before Chris died... Our family friends: Kathy, Eileen, and Nancy lost their mom 2 weeks ago.. and my godmother lost her dad 2 weeks ago. I think Chris has met them already... Jeanie's little 2 yr old cousin got diagnosed with childhood leukemia (ALL) right after Chris died.. Please pray for little Logan...
I am so happy that I hear from Tom, Brian, Lew, Matt, and Danny regularly... I love those guys and what makes me sad is that Chris loved them sooo much and wanted to badly to have his family back.. Chris would have been the best dad... He took care of his brothers when he was younger when mom wasnt around.. and he loved kids ... was a natural with them... not a typical guy... He loved Olivia, Haleigh, Dylan, Ben as much as I do... He loved my friends and family genuinely...
If Rex is getting into trouble, I swear Chris is taunting him.. I wonder where he is everyday.. but I am ok. I get sad when I remember silly things like how he wanted to try eating strawberries after transplant cus he thought maybe his allergy went away... or how when he couldnt walk on his own, he would stand up with my help in the hospital and hold onto me and hug me.. and how one time he joked that we were dancing and wiggled his butt a little... Or when I think about how he never got to one last Devils game ... or how he couldnt eat for a few week and just wanted some water or coffee so bad... Those are the things that really get to me... Or how he wanted to just go home and lay in his bed. When I think about his little requests and wants I could cry.
I am finally almost done with thank you cards... and I have CDs of his fave music for those of you who want a copy...
For those of you who want to donate in his memory, we ask for donations to be made to the Cancer Institute of NJ. Little Albany Street. You can make donations in his name on the website or send me a check and I can take care of it for you....
Thanks to those of you who did donate already
I also copied the Blog in its entirity onto a Word doc for easier reading.. Its 160 pages or so!
Lastly, when Sharon was preparing for the Eulogy, I sent her a bunch of stuff about Chris to help her with compiling... And, I have copied and pasted a bunch of what I said below: If its repetitive, I am sorry but I just dont have it in me to do any more editing...
I will never forget meeting Chris in East Windsor when I was dog sitting... My headlight was out, as many of you know... and when I got into a car accident last week (and broke my toes) the bumper was damaged but the headlights were fine. It made me chuckle... He replaced all the lights and they were untouched in the accident
Ever since then, we would say "You had me since 'your headlight is out'" instead of "you had me from hello"
Chris had a bunch of sayings he used often...
"Workin on it" "Sounds like a plan" "lets do it" Go big or go home"
All of these remind me of him whenever I hear them...
When he was just wanting to sleep.. nurses would ask him if he was ready for meds or whatever and he would be a trooper and say "lets do it" or when he would be trying to get himself up ... "workin on it"
Lets not forget the "No holes in my colon, dear jenny, dear jenny" song.. Back in November when Chris was in ICU before we even knew if he would get to transplant.. he was so excited with the catscan results.. and i had no idea there was a hole in my bucket song... chris was sooo cute when he sang it...
Chris always told me I leaked when he saw me crying... so whenever i got leaky in front of him, i could play it off as being over emotional and being sad that he wasn't home yet... but really, i was scared to death and heartbroken watching him feel so crappy
.. I leaked a lot these last couple weeks...
When I met Chris.. before he was sick... he told me he hadnt seen most of his family in 10 years.. and yet whenever he spoke of them, i knew how dearly he missed them and loved them. He told me how he took care of the little ones since he was the oldest of 7...
When Chris was first diagnosed, he was at JFK Hospital, and he felt like maybe it would help bring his family together and cause some good. Little did we know how much sicker he would really be
He was so strong. when he came to Robert Wood, he was told me was a very unique case.... and that he would be in medical books... he was like "i want to be interviewed. if i can help others, that is great"
I dont know where he found his strength.. but he was my rock and therefore i was able to he his even though i leak a lot ;)
Chris was obsessed with technology
He loved fixing computers, building them, fixing things in my house, with my tv, etc...
He was a part of a radio network-- he would program his radios and scanners and listen to the emergencies in nearby townships.. and i honestly started liking it too.. i kinda miss those calls
Chris must have switched his cell phone model 6 times in the last year... he drove me nuts
My parents adored Chris as much as he adored them... As soon as they found out he was sick, they let him move in with us... My mom loved her like her own son -- another Chris, since i already have a brother chris
Before Chris was sick, he was moving and needed a home for Rex the cat. My dad was alergic, but agreed to try it out... and just like a blessing, no allergy... Chris told me he thought it would make my parents happier and closer.. and he has them wrapped around his paws... Chris was right
I was allergic too when i first met chris.. but after a couple months of suffering, my allergy went away too... Funny how things happen
My dad, post Budweiser employment, told Chris he needed to get better so they could make beer at home together... Chris said "sounds like a plan" Chris was one guy my parents not only loved, but loved so unconditionally and quickly
When Chris was in ICU briefly after transplant on Christmas Eve, Chris had been given a dose of his favorite dilaudid, so was quite groggy.. but when he woke, we asked if he knew where he was and who were were ... when he looks at me he says "my other half" and when he sees my mom he says "mom" and its not the first time ... I really feel God brought him to our family on purpose...
My brother and Chris were soulmates too... brothers really... they hit it off the minute they met.
Early on, we all went to dinner and I was the 3rd wheel..
Chris and Chris were bonding over all sorts of similarities.. but when they talked about food, my brother asked if he liked Cheese.. and when the answer was yes and they both agreed how much they loved it, the deal was sealed.. Chris approved of Chris and vice versa....
Rex is my little piece of Chris that he left for me.. Even though we didn't have any kids, I will always think of Chris when I see Rex... as strange as it might seem to some...
When Chris was feeling better in January, he couldn't walk yet but he was so tired of being in the room, so we got a wheelchair, bundled him up and i took him for rides a few times in the hospital... We rolled over to the childrens hospital and all over.. by the fireplace in the lobby..we had our "dates" with hot tea when we escaped the bone marrow unit for our rides... I am sooo happy we were able to do that... so glad... i got him out of that room.. not knowing them that that would be our last dates...
In the childrens hospital, we would put the wheelchair under the giraffe who would tell you how tall you are... Chris wanted to get measured everytime .. our fun
Chris installed his TIVO on 2 of the tvs in our house when he moved in.. and now its not working right... I already need him and he isnt here :( Whenever I watch his sports show "Around the Horn" or hear scanner radios, i will think of him
Oh, a special special outing for us was June 5th.. the night before chris was in the ER finding out how sick he was... we went to a Tim McGraw concert.... We had an amazing time... and little did we know it would really be our last date before all the chaos... we had dates after getting sick, but Chris just never felt like himself.... Tim sings mine and Chris's song "My Best Friend" but he also sings "Live Like you were Dying" and we rocked out to it that night... The next day, it was so real... Chris still wanted to listen to it...
I sang "My Best Friend" to Chris in his last hours a few times... Chris knew i cant sing... and I am sure he was laughing inside when he heard me.. but the words were ours... "we just get closer, fall in love all over, everytime I look at you... I dont know where I'd be, without you hear with me... Life with you makes perfect sense... My Best friend"
There is the story from last week about Chris waking up a couple days after surgery telling me to take $50 to church... and I did... and the gospel was about healing... Mark 1:29-39
Or, when he was not intubated anymore a day after surgery.... and me and mom visited... he was pretty ok.. talking in between dosing off... and when we were leaving he was ok with it.. but asked me for "one little favor before you leave for the night..." I was excited.. i thought he was asking for a hug or something... but no... he asked for a shot of his favorite stuff... dilaudid.... sorta funny... as out of it as he was.. he remembered the drug that made him feel good.. too good... poor guy.. he was probably pretty miserable.. kinda wish we gave him one last shot of his favorite stuff :(
And when it came to Chris's strengh.. his "go big or go home" -- i would be so upset everytime there was a new bigger obstable.. and chris would just say "hey i am going big" He would even say "i dont ask God Why... I just ask Him what next?"
I think by January he might have been done with asking what next.... but he fought ...
My best friend and I visited Chris also a couple days after surgery and he was still confused about his surgery.. didn't remember going to ICU so was asking to go back to 4north... and i reminded him he had surgery... I was telling him to hang in there and that he could punch anyone he wanted when he got out of there.. so he took his fist and made punching motions... that was only a week ago or less... and he was still able to be himself...
Chris gave me more love than anyone can imagine... I wouldn't trade this time with him for the world... he set the bar really high... He showed me what it feels like to be number 1.. a princess... he was truly my rock and i was his... what we had was beyond special.. we wanted to make a difference together... and he told me almost every day that he woulda been in a bar if it werent for me.. he was fighting for us.. and it kept me strong.... Since we met he would say lots of sweet things to me.. but the one i will always remember and the one i said to him many many time before he died was "I love you to pieces..." i will always and forever have a huge place in my heart for my Chris... always...
Also he would get a kick out of my mom's stories.. she would call me to tell me something that Rex was doing and it became a very frequent event.... so he eventually called these stories the "Loretta's Daily REX REPORT" He really enjoyed hearing about what Rex was up to ... and glad he was so taken care of ... even though he said "he's getting toooo spoiled" He did tell me a couple weeks ago that he really missed him
All these months being scared of losing Chris.. it was the scariest thought imaginable... It made me sad... obviously... terrified... this was the guy i could see a perfect future with... he wanted the same things... he was truly my other half... sounds so cliche, but he completed me... i dont know how i could possibly ever find someone as perfect...
Anyways... recently (and even the whole time i was with Chris) I hear friends and family talk about their marriages.. complain about their boyfriends and husbands... and I always thought "wow... Chris is just not like that... Chris is so in-tune with my needs... never hesitated to put me first..treated my best friends like his best friends and it came so naturally to my family to call him theirs." and it sounds so cheesey... but i know how other relationships start... guys try to impress the girl.. but Chris was so genuine... had a natural nurturing personality.. lots of morals... wanted to make a difference in the world with me...
The day before the wake, I was running around doing errands -- getting prints made of Chris for the wake-- etc... and i felt a terrible heaviness in my heart... and i thought about everything... how perfect we were and what SHOULD HAVE BEEN... and how incredible.. and then i thought... gosh.. he was too good to be true... God needed him ... Ever since Chris was diagnosed, Chris and I had a little theme.. "You cannot plan.. just do things that make us happy... you have to... never know whats gonna happen" So, obviously this was God's plan... and Chris is probably ok with this now... he always said "sounds like a plan" -- (although I am sure he misses me and is sad that I am so lost right now)
its so hard for me to say that because I want Chris.. I wanted God to wait longer for Chris and I will be sad for a long time.. but then I think ... you know what... Chris surely was "the best" that Fr Anthony mentioned.. God needs him... and I got the best gift... God brought Chris into my life before taking him.. I got to be treated like a princess by the perfect guy... I am the luckiest girl in the world... If he was gonna have a great relationship and mountains of love before he died, I am glad it was me... and I know Chris was just needed upstairs... but I am blessed because he is mine.. and I have an angel to talk to and guide me through every day of the rest of my life....
And now I am having trouble seeing my monitor because I am crying... and i will certainly have a hard time believing what i just wrote while I miss him terribly over the next "who knows how long"-- but I do believe it and I know how great Chris was... And my experience with him taught me and those around me so much.. he touched so many people... My life is better because of him... i just wanted my better life to include him... I only hope that those around me are surrounded by as much love as Chris gave me...
Thats all I got... Love you all... Thanks
Saturday, February 14, 2009
Funeral Arrangements
Sunday Feb 15th Viewing at Costello-Runyon Funeral Home
2-4pm and 7-9pm
568 Middlesex Avenue (Route 27)
Metuchen, New Jersey 08840
732-548-0149 Toll Free 800-522-0149
Funeral Mass at Saint Helenas RC Church
Monday Feb 16th at 9:30am
Grove Avenue
Edison NJ
Burial at Saint Gertrude Cemetary
Inman Avenue Colonia NJ following mass
Repass (lunch after burial)
Metuchen Elks Lodge (around 12noon or so)
All friends and family welcome
2-4pm and 7-9pm
568 Middlesex Avenue (Route 27)
Metuchen, New Jersey 08840
732-548-0149 Toll Free 800-522-0149
Funeral Mass at Saint Helenas RC Church
Monday Feb 16th at 9:30am
Grove Avenue
Edison NJ
Burial at Saint Gertrude Cemetary
Inman Avenue Colonia NJ following mass
Repass (lunch after burial)
Metuchen Elks Lodge (around 12noon or so)
All friends and family welcome
Friday, February 13, 2009
Saddest Day of my life
Chris had so many of his favorite people with him last night...
His dad and brothers.. my parents and brother and our best friends...
Everyone left little by little as it got later last night...
I spent the night with Chris.. it was the worst night of my life but at the same time, I feel so blessed I was there...
I watched as his heart rate got faster and his breathing more difficult... and I sat with him holding his hand and rubbing his arms and face.... he had a short while of more troubled breathing... during the last 60-90 minutes, his eyes were open and he looked in my direction... I got a slight moan from him while I was speaking to him.. I sang our song to him (he knew I couldnt sing.. maybe he was laughing)... "My Best Friend" by Tim McGraw...
At around 5:15am, Chris left us to spend eternity with the angels... I watched as he finally stopped suffering... He finally looked peaceful....
Today, I lost my best friend... the man I was supposed to spend the rest of my life with and have a family with... He treated me like such a princess... even in his worst days, he worried about me... worried about if my back hurt from sleeping on the couch... and I enjoyed every minute of the time I had with him... God introduced me to him for a reason... And I cannot change the fact that I wanted him forever and did not get my request....
I miss him already and even though I know he is finally not suffering... I wanted a miracle and its going to take me some time to have this sink in... It is much easier to know that this was supposed to happen than it is for my heart to be ok with it...
Dana said I will have quite an awesome angel looking over me forever... I said "I better behave" and she told me "nah, have some fun.. keep him busy" and I think she is right... It will help knowing Chris is with me no matter what I am doing
Well, now that I am balling... I will sign off...
Thank you for reading my novels.. I think I will find a way to continue this blog for Chris....
xoxox talk to you all later
Jenn (& Chris from heaven)
His dad and brothers.. my parents and brother and our best friends...
Everyone left little by little as it got later last night...
I spent the night with Chris.. it was the worst night of my life but at the same time, I feel so blessed I was there...
I watched as his heart rate got faster and his breathing more difficult... and I sat with him holding his hand and rubbing his arms and face.... he had a short while of more troubled breathing... during the last 60-90 minutes, his eyes were open and he looked in my direction... I got a slight moan from him while I was speaking to him.. I sang our song to him (he knew I couldnt sing.. maybe he was laughing)... "My Best Friend" by Tim McGraw...
At around 5:15am, Chris left us to spend eternity with the angels... I watched as he finally stopped suffering... He finally looked peaceful....
Today, I lost my best friend... the man I was supposed to spend the rest of my life with and have a family with... He treated me like such a princess... even in his worst days, he worried about me... worried about if my back hurt from sleeping on the couch... and I enjoyed every minute of the time I had with him... God introduced me to him for a reason... And I cannot change the fact that I wanted him forever and did not get my request....
I miss him already and even though I know he is finally not suffering... I wanted a miracle and its going to take me some time to have this sink in... It is much easier to know that this was supposed to happen than it is for my heart to be ok with it...
Dana said I will have quite an awesome angel looking over me forever... I said "I better behave" and she told me "nah, have some fun.. keep him busy" and I think she is right... It will help knowing Chris is with me no matter what I am doing
Well, now that I am balling... I will sign off...
Thank you for reading my novels.. I think I will find a way to continue this blog for Chris....
xoxox talk to you all later
Jenn (& Chris from heaven)
Thursday, February 12, 2009
Still Hanging
The doctors think Chris's fast shallow breathing is very indicative of whats happening...
They think he might not make it thru the day
Palliative Doctors are involved (similar to hospice)
Chaplain Sharon is still our chaplain thank goodness
Chris's brother Lew and sister in law Jen flew up from FLorida (air force) yesterday and Jeanie, Christine, Christine, mom, dad, Pop Wax, Tommy and Danny and Ronnie and Gary have been here thru the day... Most are still here... my brother just got here
Haleigh came to see Chris.. and Dylan.. so young.. but they came up from DE and Chris opened his eyes when we said Haleigh (5 yrs old) was here... awwww Chris loved her and Dylan so much
Now we are just waiting to see how he does
He would be so happy to know they are planning on moving him to bone marrow unit
They think he might not make it thru the day
Palliative Doctors are involved (similar to hospice)
Chaplain Sharon is still our chaplain thank goodness
Chris's brother Lew and sister in law Jen flew up from FLorida (air force) yesterday and Jeanie, Christine, Christine, mom, dad, Pop Wax, Tommy and Danny and Ronnie and Gary have been here thru the day... Most are still here... my brother just got here
Haleigh came to see Chris.. and Dylan.. so young.. but they came up from DE and Chris opened his eyes when we said Haleigh (5 yrs old) was here... awwww Chris loved her and Dylan so much
Now we are just waiting to see how he does
He would be so happy to know they are planning on moving him to bone marrow unit
Tuesday, February 10, 2009
Bad News- Chris is not going to get better
I am not going to get into much detail...
Chris's body is not fighting anymore :(
I went to see him at lunch today and the doctors called me into the lounge....
Thank God my personal angel, Chaplain Sharon was there at the same time... She came with us... Dr Aisner, Anne, and the kidney doctor told me that Chris's chemistries are all out of whack...
His kidneys are shutting down... one arm is cold... they basically said the infections and fungus have cut off blood vessels.. i am totally gonna get this wrong medically... sooo besically his organs are shutting down slowly..
They told me he is in a lot of pain and think its cruel to revive him if he bottoms out.... I am in a state of shock
THey think he has a few days to live
My best friends and mom ran here ASAP
And Sharon called Chris's dad for me... Him and the waxmonsky brothers came next...
Thank goodness for my best friends (Jeanie, Christine and Christine) Chris always told me what amazing friends i have and he is so right..
It breaks my heart to see my Chris like this and to see my mom and everyone so sad...
I keep leaking but Chris said I leak all the time... nothing has changed...
Thanks Adriana for coming with food for me.. and my brother is the best brother in the world...
I am sure I will add more when I can....
thanks everyone for being there for me and us...
xoxox Jenn :(
Chris's body is not fighting anymore :(
I went to see him at lunch today and the doctors called me into the lounge....
Thank God my personal angel, Chaplain Sharon was there at the same time... She came with us... Dr Aisner, Anne, and the kidney doctor told me that Chris's chemistries are all out of whack...
His kidneys are shutting down... one arm is cold... they basically said the infections and fungus have cut off blood vessels.. i am totally gonna get this wrong medically... sooo besically his organs are shutting down slowly..
They told me he is in a lot of pain and think its cruel to revive him if he bottoms out.... I am in a state of shock
THey think he has a few days to live
My best friends and mom ran here ASAP
And Sharon called Chris's dad for me... Him and the waxmonsky brothers came next...
Thank goodness for my best friends (Jeanie, Christine and Christine) Chris always told me what amazing friends i have and he is so right..
It breaks my heart to see my Chris like this and to see my mom and everyone so sad...
I keep leaking but Chris said I leak all the time... nothing has changed...
Thanks Adriana for coming with food for me.. and my brother is the best brother in the world...
I am sure I will add more when I can....
thanks everyone for being there for me and us...
xoxox Jenn :(
Sunday, February 8, 2009
Infection - Time to Fight
Quick update
Doctors told me that they found a fungus on the intestines that they removed during surgery
They put him on anti-fungal meds (different ones than he was on for a long time)
Its a very very tough fungus to get rid of
His immune system is suppressed .. have to continue doing so at least a little bit for the graft vs host
Chris has been "awake" but does not remember the week. He is very uncomfortable
We tell him he had surgery.. but I dont think he gets it completely
Nurses from bone marrow visit him here and there... his dad and my dad were there Friday. His dad and brothers are coming back today
My mom and bro kept me company yesterday...
Yesterday, at one point he woke up and asked me to bring $50 to chuch
Considering he doesnt say much, i thought that i should do that.
So I went to mass this morning...
Christine Rabbath actually talked me into it. I assumed God would accept $5 since we are broke, but Christine said to do it and she would pay me back. I thought about it, and I realized I had to do it. I have no idea what chris was thinking about or what might have been revealed to him but I thank Christine for that
Today, the gospel was from Mark 1: 29-39 - It was about healing people who had diseases
I would like to think that was God telling us to hang in there... we will see
Chris has the odds stacked against him now and we need prayers. Chris is struggling with just being confined and confused. He needs strength and healing
Off to the hospital.. talk to you all later
xoxox
Doctors told me that they found a fungus on the intestines that they removed during surgery
They put him on anti-fungal meds (different ones than he was on for a long time)
Its a very very tough fungus to get rid of
His immune system is suppressed .. have to continue doing so at least a little bit for the graft vs host
Chris has been "awake" but does not remember the week. He is very uncomfortable
We tell him he had surgery.. but I dont think he gets it completely
Nurses from bone marrow visit him here and there... his dad and my dad were there Friday. His dad and brothers are coming back today
My mom and bro kept me company yesterday...
Yesterday, at one point he woke up and asked me to bring $50 to chuch
Considering he doesnt say much, i thought that i should do that.
So I went to mass this morning...
Christine Rabbath actually talked me into it. I assumed God would accept $5 since we are broke, but Christine said to do it and she would pay me back. I thought about it, and I realized I had to do it. I have no idea what chris was thinking about or what might have been revealed to him but I thank Christine for that
Today, the gospel was from Mark 1: 29-39 - It was about healing people who had diseases
I would like to think that was God telling us to hang in there... we will see
Chris has the odds stacked against him now and we need prayers. Chris is struggling with just being confined and confused. He needs strength and healing
Off to the hospital.. talk to you all later
xoxox
Friday, February 6, 2009
Worst Week Since Diagnosis- 2 Surgeries
Sorry I have not blogged in 5 days. It has been a terrible week
But because I have been running between work, home, and hospital and have had good company at the hospital, I have not had a chance to update...
Basically, Chris seemed ok Monday night. Jeanie and I visited with him in ICU
They were going to be taking him to catscan at night... but he was having trouble keeping the clear drink down
I was not too too worried because they saw no air getting thru on the xray 2 days prior
But, Monday night at midnight, I got a call from a surgeon... There was a hole in Chris's colon and they needed to go in and do emergency surgery
That was the worst phone call. Jeanie had just gone home, so I called her back and she took a ride there to meet me and wait with me
On my drive to the hospital, I called Chris's dad, his brothers, his Aunt Ro & uncle Les, Ronnie/Gary, and I texted Chaplain Sharon
I only reached Matt, who also tried to call dad, but couldnt reach him... I also talked to Uncle Les and ROnnie, but they are in Maryland and Delaware
Chris was so sleepy from being so sick (ovbiously with a hole in his belly)
We told him what was happening but he would fall asleep or mumble that he loved me or say he was a mess but that he would get thru it...
He would wake once in a while and say "whats going on?" Awww poor guy
My heart was breaking... I couldnt keep my tears in.. luckily, i leak often, and Chris always tells me to stop leaking so I just made it like my typical emotional state and told him that he had to get better so we could plan our wedding.. He said "sounds like a plan" -- He always said "Go big or go home" and well, this is big..... Sharon always said it has to get worse before it gets better
But I could have never prepared myself for this
Then Chris said "I have a feeling you know more than me" More heart breaking.. I said "Chris, remember in November when you had no hole in your colon and you sang a little song 'Theres no hole in my colon dear jenny dear jenny'"? HE said yes.. I said "well now you do have one, and they have to just go in and fix it.. all you have to do is hang in there and get thru this" He was asleep again shortly after...
Luckily, we knew the surgeon from previous times they got surgery on board "in case"
He explained that this was very serious. Its not a very complicated surgery normally, but because he is already sick and they cannot know what the Graft Vs Host is going to continue to be like.. and because they know his immune system is suppressed, he will heal so much lower and we have to pray that he can heal and avoid infection.... Dr Gannon was the surgeon and he was very honest with me, but he said he wouldnt do this if he didnt have some hope
He also said he doesnt like to operate on people in Chris' condition unless its urgent and he cannot live with a hole in his colon.. waiting another 24-48 hours could be much worse
Surgery lasted 2 hours max. They did not close him up because he wanted to go back in after a day or 2 to see if there was more small intestine to take and also close him up with colostomy bags... Chris was stable and sedated... Since he is intubated, they have his arms tied down so he doesnt pull anything out
At 530am , i went home to nap.. I didnt nap much but Rex knew i was sad and layed right against me the whole time
Tommy and dad called me back. They came to visit on Tuesday. Chris knows when you are there but he cannot talk cus he is sedated...
Aunt Ro called and she visited Wednesday and saw him all day before the 2nd surgery
The 2nd surgery went fine. They took out another 7 cm of small intestine.
Christine Rabbath came to wait with me and Ben and my mom while he was in 2nd surgery Wednesday afternoon
Chris has been stable (blood pressure, temp, heart rate, etc) since all of this...
He is swollen and retaining a lot of water but its common from surgery.. they did not want to give him meds to get rid of water yesterday because it was too soon after surgery
Hopefully they will do that today and they will be able to take the tube out of throat soon... He is breathing about the oxygen they are giving him.. that is good
He wakes a bit here and there and he knows we are there and he sometimes gets a little excited.. but he is bothered by the tube obviously
My dad visited during the day a bit so he has been getting company
THe bone marrrow nurses also went down to see him
TOday, his dad is visiting and I think my dad might be going back too
Whenever they take the tube out and he is awake enough, he will learn about his colostomy bags :( I am dreading that.
If he fully recovers, they will be able to remove those and go back in to fix him right
He has a tough challenage, but i have faith.. Chris can beat this. He has beat the odds so far. Its hard to heal in his condition and he is sooo strong
I am told that the nurses see people like him (different complications, but all bad) and they think they are not gonna make it and they do.. and chris is stronger than most people... we just need a lot of prayers
There are more details to write but I will leave it at that for now..
xoxxo jenn
But because I have been running between work, home, and hospital and have had good company at the hospital, I have not had a chance to update...
Basically, Chris seemed ok Monday night. Jeanie and I visited with him in ICU
They were going to be taking him to catscan at night... but he was having trouble keeping the clear drink down
I was not too too worried because they saw no air getting thru on the xray 2 days prior
But, Monday night at midnight, I got a call from a surgeon... There was a hole in Chris's colon and they needed to go in and do emergency surgery
That was the worst phone call. Jeanie had just gone home, so I called her back and she took a ride there to meet me and wait with me
On my drive to the hospital, I called Chris's dad, his brothers, his Aunt Ro & uncle Les, Ronnie/Gary, and I texted Chaplain Sharon
I only reached Matt, who also tried to call dad, but couldnt reach him... I also talked to Uncle Les and ROnnie, but they are in Maryland and Delaware
Chris was so sleepy from being so sick (ovbiously with a hole in his belly)
We told him what was happening but he would fall asleep or mumble that he loved me or say he was a mess but that he would get thru it...
He would wake once in a while and say "whats going on?" Awww poor guy
My heart was breaking... I couldnt keep my tears in.. luckily, i leak often, and Chris always tells me to stop leaking so I just made it like my typical emotional state and told him that he had to get better so we could plan our wedding.. He said "sounds like a plan" -- He always said "Go big or go home" and well, this is big..... Sharon always said it has to get worse before it gets better
But I could have never prepared myself for this
Then Chris said "I have a feeling you know more than me" More heart breaking.. I said "Chris, remember in November when you had no hole in your colon and you sang a little song 'Theres no hole in my colon dear jenny dear jenny'"? HE said yes.. I said "well now you do have one, and they have to just go in and fix it.. all you have to do is hang in there and get thru this" He was asleep again shortly after...
Luckily, we knew the surgeon from previous times they got surgery on board "in case"
He explained that this was very serious. Its not a very complicated surgery normally, but because he is already sick and they cannot know what the Graft Vs Host is going to continue to be like.. and because they know his immune system is suppressed, he will heal so much lower and we have to pray that he can heal and avoid infection.... Dr Gannon was the surgeon and he was very honest with me, but he said he wouldnt do this if he didnt have some hope
He also said he doesnt like to operate on people in Chris' condition unless its urgent and he cannot live with a hole in his colon.. waiting another 24-48 hours could be much worse
Surgery lasted 2 hours max. They did not close him up because he wanted to go back in after a day or 2 to see if there was more small intestine to take and also close him up with colostomy bags... Chris was stable and sedated... Since he is intubated, they have his arms tied down so he doesnt pull anything out
At 530am , i went home to nap.. I didnt nap much but Rex knew i was sad and layed right against me the whole time
Tommy and dad called me back. They came to visit on Tuesday. Chris knows when you are there but he cannot talk cus he is sedated...
Aunt Ro called and she visited Wednesday and saw him all day before the 2nd surgery
The 2nd surgery went fine. They took out another 7 cm of small intestine.
Christine Rabbath came to wait with me and Ben and my mom while he was in 2nd surgery Wednesday afternoon
Chris has been stable (blood pressure, temp, heart rate, etc) since all of this...
He is swollen and retaining a lot of water but its common from surgery.. they did not want to give him meds to get rid of water yesterday because it was too soon after surgery
Hopefully they will do that today and they will be able to take the tube out of throat soon... He is breathing about the oxygen they are giving him.. that is good
He wakes a bit here and there and he knows we are there and he sometimes gets a little excited.. but he is bothered by the tube obviously
My dad visited during the day a bit so he has been getting company
THe bone marrrow nurses also went down to see him
TOday, his dad is visiting and I think my dad might be going back too
Whenever they take the tube out and he is awake enough, he will learn about his colostomy bags :( I am dreading that.
If he fully recovers, they will be able to remove those and go back in to fix him right
He has a tough challenage, but i have faith.. Chris can beat this. He has beat the odds so far. Its hard to heal in his condition and he is sooo strong
I am told that the nurses see people like him (different complications, but all bad) and they think they are not gonna make it and they do.. and chris is stronger than most people... we just need a lot of prayers
There are more details to write but I will leave it at that for now..
xoxxo jenn
Sunday, February 1, 2009
Back in ICU... Quick Update
Well...
This morning I woke up at 630am to 3 missed calls from Bone Marrow Nurses Desk
I called back right away and Sophie had been calling to let me know they were moving him down to ICU
Apparently his blood pressure was a little low overnight and although she had him stable, and his fever had broken, I guess the ICU docs felt it was best to move him
Sophie was saying she hoped the oncologists (Strair or Aisner)would come in before they moved him.. but i called Dr Strair and left a message explaining what was going on...
They told me they packed up his stuff and were holding his cell and computer til i got there.. that was nice.. i usually have to pack him up and move it all and then wait an hour while they get him settled in ICU
Anyways, my dad followed me to the hospital and took his stuff home... I went to ICU and saw Chris... His nurse Sara was wonderful.. very compassionate and explained a lot to me.. very friendly.. Chris slept most of the time..
The infectious disease doctors are on board, as are the intensivists (pulmonary), surgeons again in case, and others...
Basically, they want to closely monitor him
apparently, yesterday, they only took blood from his picc line.. not from a vein.. they always take from both
No one told me yesterday that they couldnt get a vein...
So, they havent officially ruled out the possibility that his picc line is infected.. but because his bellyrubin is high (indicates gall bladder, or liver area) and because he has increased belly cramps and tenderness... the doctors are thinking his infection came from the gall bladder
As we know, the GI Tract is a common place that gets attacked with all his treatments... and he has the GVHD there... but also they said sludge could accumulate there and cause some blockage or inflammation..
They are doing an ultrasound ... as of 7pm tonight they had not yet.. so probably in the morning (monday morning feb 2nd). They will see if the gall bladder looks very inflammed or not
They are also attempting to get blood from a vein (i told Sara to try the hands because thats where they usually get it)
They have taken more blood from the picc...
His fever all day today was 96 to 98 so that is good... antibiotics might be working
Chris had no poop all day.. so when i left tonight at 7-ish, it had been almost 24 hours
Not sure if i should get excited because i dont know if a gall bladder infection would stop poop... i think since the stomach is connected to the intestines and whatnot that he would still poop if he has inflammation in the bowels.. but i am not a doctor, obviously... just trying to see some bright side...
anyways, his blood pressure was good all day.. they have him on dopamine.. but its still good that they had him stablized ...
So, there went our little bone marrow unit, 4th floor, JennChris party for the superbowl... postponed! :(
I am happy he was not on ativan.. but he slept... but if all that is going on in his belly, his body needs to rest...
I decided to leave .. actually i think i left at 630... i watched Faith hill and jennifer Hudson and left shortly after. they kick you out of ICU at 7pm for an hour (shift change) and figured since he was sleeping, and i wanted to get rest and watch the game, that i would just go home.. I will stop there in the morning before work
I asked Dr Hart (Infectious Disease doctor who i have known since june whenever chris had infections) about what they would do and he doesnt think surgery would be an option now... and the xray shows no punctures or holes... so they could put a tube to gallbladder to drain the crap out that is infected..
But who knows yet... it could be just meds.. or something else
Chris would open his eyes and smile when i talked and answer when i asked him stuff.. but he wants to sleep.. he is pretty miserable but smiled and agreed when i told him to hang in there...
He said something about still fighting "for us" - poor guy has been through hell.. and back... and back to hell...
Its amazing how fast this happened... He asked me on friday night to bring his laptop on saturday and when i got there satutrday he already had a 102.3 fever
Dr Hart talked to me about what i already figured, but i wanted clarification... he provides the antibiotics orders and management and he hopes to be given as best an immune system as possible.. but with his kind of GVHD, the oncologists do not want to stop the immunosuppresents so we just hope that the meds work with his suppresed immune system
He got platelets and red blood today. His white cell count was a little higher than yesterday.. it was 2.9... 4-10 is normal. Under 2 is neutropenic..
Dr Aisner is on for February.. I asked him that today... so atleast there will be someone there i like for a while.. i was worried about who february might be
When i got to ICU today, i ran into a resident i know from november or october and she is in ICU now... she is so sweet and chats whenever i see her.. i think she liked me and chris... makes me feel more comfy when i can talk to doctors i have gotten to know
i am not happy that the steelers won.. but i am more sad that chris missed yet another "holiday" - it was a good game though
Well, its Feb 1st.. 2 full months since he was admitted for transplant...
He has been in the hospital for about 95 of the last 104 days or so
I never imagined he would still be in the hospital or going back to ICU this far into transplant... But I trust God will get us thru this additional ICU trip & infection...
Please keep him in your prayers
i will update more tomorrow
xoxox Jenn
This morning I woke up at 630am to 3 missed calls from Bone Marrow Nurses Desk
I called back right away and Sophie had been calling to let me know they were moving him down to ICU
Apparently his blood pressure was a little low overnight and although she had him stable, and his fever had broken, I guess the ICU docs felt it was best to move him
Sophie was saying she hoped the oncologists (Strair or Aisner)would come in before they moved him.. but i called Dr Strair and left a message explaining what was going on...
They told me they packed up his stuff and were holding his cell and computer til i got there.. that was nice.. i usually have to pack him up and move it all and then wait an hour while they get him settled in ICU
Anyways, my dad followed me to the hospital and took his stuff home... I went to ICU and saw Chris... His nurse Sara was wonderful.. very compassionate and explained a lot to me.. very friendly.. Chris slept most of the time..
The infectious disease doctors are on board, as are the intensivists (pulmonary), surgeons again in case, and others...
Basically, they want to closely monitor him
apparently, yesterday, they only took blood from his picc line.. not from a vein.. they always take from both
No one told me yesterday that they couldnt get a vein...
So, they havent officially ruled out the possibility that his picc line is infected.. but because his bellyrubin is high (indicates gall bladder, or liver area) and because he has increased belly cramps and tenderness... the doctors are thinking his infection came from the gall bladder
As we know, the GI Tract is a common place that gets attacked with all his treatments... and he has the GVHD there... but also they said sludge could accumulate there and cause some blockage or inflammation..
They are doing an ultrasound ... as of 7pm tonight they had not yet.. so probably in the morning (monday morning feb 2nd). They will see if the gall bladder looks very inflammed or not
They are also attempting to get blood from a vein (i told Sara to try the hands because thats where they usually get it)
They have taken more blood from the picc...
His fever all day today was 96 to 98 so that is good... antibiotics might be working
Chris had no poop all day.. so when i left tonight at 7-ish, it had been almost 24 hours
Not sure if i should get excited because i dont know if a gall bladder infection would stop poop... i think since the stomach is connected to the intestines and whatnot that he would still poop if he has inflammation in the bowels.. but i am not a doctor, obviously... just trying to see some bright side...
anyways, his blood pressure was good all day.. they have him on dopamine.. but its still good that they had him stablized ...
So, there went our little bone marrow unit, 4th floor, JennChris party for the superbowl... postponed! :(
I am happy he was not on ativan.. but he slept... but if all that is going on in his belly, his body needs to rest...
I decided to leave .. actually i think i left at 630... i watched Faith hill and jennifer Hudson and left shortly after. they kick you out of ICU at 7pm for an hour (shift change) and figured since he was sleeping, and i wanted to get rest and watch the game, that i would just go home.. I will stop there in the morning before work
I asked Dr Hart (Infectious Disease doctor who i have known since june whenever chris had infections) about what they would do and he doesnt think surgery would be an option now... and the xray shows no punctures or holes... so they could put a tube to gallbladder to drain the crap out that is infected..
But who knows yet... it could be just meds.. or something else
Chris would open his eyes and smile when i talked and answer when i asked him stuff.. but he wants to sleep.. he is pretty miserable but smiled and agreed when i told him to hang in there...
He said something about still fighting "for us" - poor guy has been through hell.. and back... and back to hell...
Its amazing how fast this happened... He asked me on friday night to bring his laptop on saturday and when i got there satutrday he already had a 102.3 fever
Dr Hart talked to me about what i already figured, but i wanted clarification... he provides the antibiotics orders and management and he hopes to be given as best an immune system as possible.. but with his kind of GVHD, the oncologists do not want to stop the immunosuppresents so we just hope that the meds work with his suppresed immune system
He got platelets and red blood today. His white cell count was a little higher than yesterday.. it was 2.9... 4-10 is normal. Under 2 is neutropenic..
Dr Aisner is on for February.. I asked him that today... so atleast there will be someone there i like for a while.. i was worried about who february might be
When i got to ICU today, i ran into a resident i know from november or october and she is in ICU now... she is so sweet and chats whenever i see her.. i think she liked me and chris... makes me feel more comfy when i can talk to doctors i have gotten to know
i am not happy that the steelers won.. but i am more sad that chris missed yet another "holiday" - it was a good game though
Well, its Feb 1st.. 2 full months since he was admitted for transplant...
He has been in the hospital for about 95 of the last 104 days or so
I never imagined he would still be in the hospital or going back to ICU this far into transplant... But I trust God will get us thru this additional ICU trip & infection...
Please keep him in your prayers
i will update more tomorrow
xoxox Jenn
Saturday, January 31, 2009
Saturday Update
Well....
I got to the hospital today ... I only went for an hour because I had Sean's 1st Birthday party from 12 to 4...
Last night, Chris had mentioned he wanted me to bring his laptop.. SO I did
Anyways, my parents were picking me up from the hospital on the way to the party...
I walk into Chris's room and he has a new nurse Lois...
She looked familiar... turns out she works across the street at the cancer institute... i think she came into the bone marrow class we went to in October.. she said yes...
Turns out she was a wonderful nurse to have because she worked here in the past and works per diem now once in a while... she knows so much so i actually got answers ...
Here is the point of the day.. when I walked in at 10:15.... chris had oxygen on his nose.. :( he had a fever 102.3 awwwww
The did blood cultures and took a chest x-ray. She had already cleaned him up 3 times.. but small amounts...
He was waiting for them to come get him and take him to xray his belly.. Just to check for progress or to make sure.. no emergency.. but want to make sure since he has the fever...
She had just given him ativan and morphine... he was out of it... talking silly... once in a while he made sense but it was so garbled
I was texting jeanie and he was telling me not to worry about it.. lol he didnt even realize it was not his phone... and then i told him to get better cus i missed him at home (i was crying a little and didnt want him to think i was too worried about his fever) and he said "we are gonna be fine..."
Then i cant remember exactly what i said about getting better but he replied "oh i know its gonna be a girl".. i asked what? and he said "our baby" awww it broke my heart.. but i wonder what he was thinking about.. our future? babies? and the poor guy is so miserable and sick... too bad its gonna cost $25000+ for fertility to use his stored "boys" and attempt getting pregnant...
Anyways.. i went to the party.. and i am so worried about him...
Funny thing is... a few days ago chris said something like "i wish they would just find something wrong.. but nothing that bad.. that maybe will make it easier to fix what is wrong... fix the diarrhea"
He is on so many immunosuppresents making it easy to catch bacteria.. but drugs that could maybe be causing some diarrhea... he definitely has Graft Vs Host BUT it could be slightly better (seemed to be getting better last weekend) and now its back to same old frequency.. could it be the pentastatin? i am not a doc but this is all so overwhelming..
anyways...
I went back after Sean's party... and his xray was over... temp was down to 100.3 or so
He had thrown up a couple times... he hadnt thrown up in a month... so it must be from whatever is going on in his body
Tonight, Sophie is back.. wooohooo
He spiked back to 102.6.. they gave him more tylennol and then some other med to bring down temp... Blood pressure is good.. the ativan is still not totally worn off... but he was telling me i needed to be his angel when he was shaking and really hot.. i gave him ice chips and he is sleeping nicely now.. i think
The blood cultures came back positive.. so he definitely has an infection.. they havent isolated which one yet though..
Xray wasnt completely read but if it was something bad it woulda been known by now...
Tomorrow is superbowl.. i hope he is more talkative tomorrow and i hope he has a better day..
I keep praying. .I feel so bad for him
Jolenta from the 5th floor stopped down this evening and we chatted... she told me how much she admired me for being around all the time..
She said she has seen countless people file for divorce after their wife was diagnosed... or cheat in their final days of hospice. .i was shocked.. thats why you get married for the right reasons.. how can anyone do that? thats awful... ugh...
anyways... so i will leave soon for home...so he can rest.. and hopefully tomorrow have a better day...
Prayers tonight.. as always
Hopefully the antibiotics that they started today will kick in and things wont be too tough tomorrow
Sophie told me tonight that the steroids he gets mask a fever often.. soooo he could have had something brewing for a few days and never spiked...
MAYBE.. my little prayer.. is that that is why he has not continued getting better after his diareaha seemed better last weekend... i am praying....
so...
love you all
enjoy the superbowl tomorrow
say a little prayer for my Chris...
xoxoxo Jenn
I got to the hospital today ... I only went for an hour because I had Sean's 1st Birthday party from 12 to 4...
Last night, Chris had mentioned he wanted me to bring his laptop.. SO I did
Anyways, my parents were picking me up from the hospital on the way to the party...
I walk into Chris's room and he has a new nurse Lois...
She looked familiar... turns out she works across the street at the cancer institute... i think she came into the bone marrow class we went to in October.. she said yes...
Turns out she was a wonderful nurse to have because she worked here in the past and works per diem now once in a while... she knows so much so i actually got answers ...
Here is the point of the day.. when I walked in at 10:15.... chris had oxygen on his nose.. :( he had a fever 102.3 awwwww
The did blood cultures and took a chest x-ray. She had already cleaned him up 3 times.. but small amounts...
He was waiting for them to come get him and take him to xray his belly.. Just to check for progress or to make sure.. no emergency.. but want to make sure since he has the fever...
She had just given him ativan and morphine... he was out of it... talking silly... once in a while he made sense but it was so garbled
I was texting jeanie and he was telling me not to worry about it.. lol he didnt even realize it was not his phone... and then i told him to get better cus i missed him at home (i was crying a little and didnt want him to think i was too worried about his fever) and he said "we are gonna be fine..."
Then i cant remember exactly what i said about getting better but he replied "oh i know its gonna be a girl".. i asked what? and he said "our baby" awww it broke my heart.. but i wonder what he was thinking about.. our future? babies? and the poor guy is so miserable and sick... too bad its gonna cost $25000+ for fertility to use his stored "boys" and attempt getting pregnant...
Anyways.. i went to the party.. and i am so worried about him...
Funny thing is... a few days ago chris said something like "i wish they would just find something wrong.. but nothing that bad.. that maybe will make it easier to fix what is wrong... fix the diarrhea"
He is on so many immunosuppresents making it easy to catch bacteria.. but drugs that could maybe be causing some diarrhea... he definitely has Graft Vs Host BUT it could be slightly better (seemed to be getting better last weekend) and now its back to same old frequency.. could it be the pentastatin? i am not a doc but this is all so overwhelming..
anyways...
I went back after Sean's party... and his xray was over... temp was down to 100.3 or so
He had thrown up a couple times... he hadnt thrown up in a month... so it must be from whatever is going on in his body
Tonight, Sophie is back.. wooohooo
He spiked back to 102.6.. they gave him more tylennol and then some other med to bring down temp... Blood pressure is good.. the ativan is still not totally worn off... but he was telling me i needed to be his angel when he was shaking and really hot.. i gave him ice chips and he is sleeping nicely now.. i think
The blood cultures came back positive.. so he definitely has an infection.. they havent isolated which one yet though..
Xray wasnt completely read but if it was something bad it woulda been known by now...
Tomorrow is superbowl.. i hope he is more talkative tomorrow and i hope he has a better day..
I keep praying. .I feel so bad for him
Jolenta from the 5th floor stopped down this evening and we chatted... she told me how much she admired me for being around all the time..
She said she has seen countless people file for divorce after their wife was diagnosed... or cheat in their final days of hospice. .i was shocked.. thats why you get married for the right reasons.. how can anyone do that? thats awful... ugh...
anyways... so i will leave soon for home...so he can rest.. and hopefully tomorrow have a better day...
Prayers tonight.. as always
Hopefully the antibiotics that they started today will kick in and things wont be too tough tomorrow
Sophie told me tonight that the steroids he gets mask a fever often.. soooo he could have had something brewing for a few days and never spiked...
MAYBE.. my little prayer.. is that that is why he has not continued getting better after his diareaha seemed better last weekend... i am praying....
so...
love you all
enjoy the superbowl tomorrow
say a little prayer for my Chris...
xoxoxo Jenn
Tuesday, January 27, 2009
Tuesday Jan 20th thru Fri Jan 30th
Tuesday morning I went to see Chris before work. He was sleepy and Liz was his nurse! yay! I mentioned that he should stay awake and watch the inauguration. I had little hope that he would...
I went to work... and watched 30 minutes of the inauguration from someone's office.
Then I went to see Chris. He was super happy and awake
He said it was a positive day! Turns out Liz spend a lot of the day in Chris's room and they watched inauguration coverage. Chris was pumped up and happy
Padma was his nurse at night. Hadnt had her in a while... Chris was happy...
I found out that they started pentastatin today. Its for 3 days.. So, he got it Tues, Wed, and Thurs evening. I ran into Dr Sedov when I got to the hospital and he filled me in. Its an immunosuppresent. Might bring his blood counts down. It is further suppressing his immune system to try to control the Graft Vs Host Disease (GVHD) - they dont want to wait any longer to try a new drug. His diarrhea wasnt slowing down. It can take 4-7 days for it to start working.
I cannot remember whether I gave him a ride in the wheelchair today.. I do not think I did .. but its been almost a week since i blogged...
I know Chris called his brother Lew tonight. Lew was getting married the next day, and he had tried to call Lew over the weekend, or a few days prior, and Lew told me he wasnt home... so Chris wanted to call Lew before he got married. They talked for a little while and that was that...
We chatted and watched some of the inaugural ball coverage. Chris was in a good mood.. and was falling asleep naturally from his day...
Oh, the psychiatrists were in during the day... They suggested Ativan (hahaha.. like he never had that before) and ambien for sleep... so they were gonna give that too him at night if he needs it...Padma is his nurse tonight... she takes good care of Chris and he likes her too...
He got sleepy and I went home to finish watching Obama and Michelle dancing
Wednesday Jan 21st... Chris had another good day...
I am blogging a week later so I cannot really remember too many details...
I cannot remember if his nurse was Valsa... bu I am pretty sure it is...
I am pretty certain that I came to visit during lunch.
My parents came to visit and were so happy to see Chris in such a good mood. He looks much better than he had been. AND he is talking and conversing so much more... He hadnt really had enough energy to talk too much for a couple weeks....
We might have taken another ride in the wheelchair.. I know we took a ride once during the week...
I know I stopped for Dunkin Donuts tea for Chris and I either tonight or maybe the next night... and I got a box of munchkins for the nurses.. I am addicted to Dunkin Donuts tea... yummo... anyways, chris can have it too -- I gave him a munchkin.. i felt so bad but he wanted it so bad and its only a lil munchkin.. he didnt seem any worse afterwards...
Jen (Chris's new sister in law) texted me to let me know that they were officially married. She also posted pics on her myspace. Jenn & Lew got married at the court house near the air force base that he is stationed at in Florida. It was small and casual. Jen's parents and some of their friends were in attendance. There are plans to have a party or reception down the road... hopefully by then Chris will be cleared to travel. He is not going to be able to fly for quite a while (year+) because of germs and whatnot. but once he can be away from home for a week, we can drive for our trips and vacations
We watched American Idol and I eventually went home to sleep
Thursday Jan 22nd. I told Chris that I would not be able to come during the work day today. We had an open house for interviews during the day ... I was not able to break away to come see him.
Chris actually talked to me on the phone today. I called him and he called me back. He told me he hadnt really gone to the bathroom very much. He sounded good... It was nice to be able to talk to him while I was at work. Its been a long time since he has been in the mood for phone calls...Chris told me that he had some new nurse who he never met before... Work was super busy with all our interviews.. but when it was all over, I went straight to the hospital to hang out with Chris...
I saw Tracy. I love her. She was on nights until a week or so ago...
She was one of the nurses who took care of Chris back when Chris was sent to Bone Marrow Unit in June. Nancy, Tracy, Vivian, Padma, Sophie and Liz were the nurses who were assigned to Chris back then. Tracy struck me as a sweetheart from Day 1. Anyhoo, I got to the hospital Thursday and she said hi.. we chatted a bit. She told me that Rose was his nurse. I was confused since Chris told me he never met his nurse before today.
Tracy is so cute. Seems so compassionate... very friendly... strikes me as someone who would be a great mom.. but i was pretty sure she had no kids...she seems kinda bummed about that
I talked to her a few nights prior and found out she is 35, single :( I would have sworn she is no older than me (29)... Apparently the unit clerk is constantly looking to hook her up.. I want to also... she deserves a nice cute boyfriend... so I am keeping my eyes open... if you know a successful cute single guy (I assume in central NJ; I assume in his 30s) keep her in mind... these nurses are like our family and I wish them all nothing but happiness...
Thank goodness I saw Tracy or i woulda been so confused.. She told me Karolina was his nurse in the morning... Rose didnt come in til 3pm or so. So Chris was NOT losing his mind!
Padma came on for the night... I went home after hanging with him all night.
Friday Jan 23rd, I worked all day and Rose was his nurse. When I got there after work, I was prepared to hang out and then go home to sleep... wake up early on Saturday to spend the whole day with Chris because I had our friend Eileen's birthday party to go to on Saturday night... My mom and I were to go to Eileen's surprise party saturday 7pm... which would mean I would have to leave the hospital on Saturday by 520pm to get home and get ready.. that was gonna leave chris alone for quite a long time ...and my dad was going to go keep Chris company at the hospital... My dad and mom had plans to go out on Friday night...
So, I was hanging at the hospital Friday night and my mom calls me after 8pm telling me that she got a call and that the party had been changed to Friday night and my mom was late. I guess they thought they told my mom... but i obviously couldnt get home and ready in time to make it to a party that had already started... So, my mom had to rush to get ready and go without me.. I dont know what my dad wound up doing... but i felt bad for my mom... I think I made her feel bad cus i mentioned that i didnt get to see the birthday card... and then I stayed even later at the hospital, because I no longer had to rush in the morning... but I was really bummed for 3 reasons.
1- I was really looking forward to a girls night out. My mom and I got a really nice gift for Eileen and I was excited to see her open it... I could use a night out.. and my mom's friend made a personalized card for Eileen that i hadnt even gotten to see (my mom talks about her cards all the time)...
2- Not only do I not get out often, but a close friend of mine, Shannon, also was having a surprise party the same night (Saturday) and I said no to the party because of Eileen's. I was bummed that I couldnt go to Shannon's and now it turns out, I could have. I have no luck. It was too late .. I was a bad girl and didnt remember to RSVP to Shannon's on time... by the time I RSVPd to her friend, i woulda felt like an idiot calling on the day-of saying i could come afterall.. anyone who knows me really well knows that i hate feeling like i am imposing or whatever.. and it would be totally out of my character to go to a party after saying i wasnt coming... plus i was invited with guest and would have liked to bring someone with me cus i dont really know anyone besides Shannon.. anyways..
3- I was making really fabulous appetizers for the party. And I bought brie and ordered special sourdough bread and my mom roasted a chicken (to make chicken salad) etc etc.. and now i had nothing to make these appys for... I was just bummed overall. i dont really eat brie cheese normally...
Now, back to the whole thing about me not getting out.. its no one's fault. My priority is Chris... I work all day.. so I WANT to see Chris after work... and he is alone all day.. pretty depressed about being stuck within the 4 walls of the room and that he is still there after 2 months... Since no one visits during the day, I want to keep him company whenever I can....
So, by the time I leave the hospital, its too late for my friends to hang out (usually)... My friends either have babies, go to sleep too early (even my brother is either in bed, or hanging with his girlfriend by the time I get home) And i dont get invited to that many parties (that i could plan for) so even though I am totally fine with not getting out much, i could really use a night out for a few drinks...
I always have intentions of pouring a glass of wine when i get home from the hospital (between 10pm and midnight usually during the week.. depending on chris's sleepiness) but then i fall asleep.. or decide to eat first if i am hungry and then dont want wine
Anyways, Friday night I hung out with chris and I cannot remember if we watched a movie or not.. but i went home around midnight and my mom had just gotten home from the party
Oh, Nicole (the really nice, very caring Wednesday/Friday head nurse) saw me on Friday. I had asked to talk to her or Mary Kate before they left for the day (I got there by 530 and they leave 8pm or later usually) also saw the doctor and he told me that the pentastatin takes 4-7 days to show that its working.. and its now day 4
So, we have to wait.. more waiting... he also told me that they put him back on morphine (they have him on the fentinol patch and had him on IV fentinol for breaththru pain). Chris had told the docs that that was not working so they put him back on morphine for breahthru
Anyways, Nicole comes to talk to me.. I asked her about 2 things
1- Most nurses will not give morphine close to chris's arm (close to the pic line)- Chris asks for it close to him.. and its because he likes to "feel" it... lately, he says he doesnt feel it. I know chris does have pain.. but i also am pretty certain that he also likes it because it helps him sleep or "feel good" and i know he feels like crap often.. but one or 2 nurses will give it to him close.. and one says "i will do anything for him" Well, thats great. I know chris likes her.. but it could drop his blood pressure.. and if its so bad for it to be done like that.. and thats the way its being explained to me, then i have a right to be disturbed that a couple will do it.. mostly because i dont need him getting an addiction any easier.. i dont think its fair to give him mixed stories on it.. and to give him a high when other nurses wont.. hopefully i am making sense to you...
Nicole explains that it is supposed to be given up higher and slowly.. but that if its given closer very slowly (over 2 minutes) and with saline, it is OK... well i am not totally happy but atleast it made me feel a little better. I really could have complained about the nurse cus i have other issues but i dont want to cause any more chaos...
2- The doctors put chris on a regular diet but only so that he can order toast and crackers. Well Chris isnt able to dial the phone really well on his own because of his eye... and only some nurses are proactive about his eating... or noticing what he can really eat. He should only be having broth and jello and juice and tea.. clear liquids, besides the toast and crackers... Well, during the day Friday, he didnt order lunch, so the default meal came and chris cheated and tried the macaroni and cheese! poor guy wanted it so bad.. and had belly cramps, but he has been having belly cramps for a day or 2 anyways.... but i asked nicole if they could put a note on his chart about his diet and having the nurse help him order... so she was cool about that.. she always helps..
Lastly, she said "oh, I gave you Sophie tonight.. i know you like her" She is awesome... We do love Sophie... And that meant we would have Sophie Fri, Sat, and Sunday.. woohoo! Anyone that night would have been fine because Tanya, Isabel, Sophie, and Kathy were on... but we are happy nonetheless ;)
Anyways, I went home late at night and then got to sleep a bit at home...
Saturday I woke up and took my time getting my day started... I called him and he told me he thought he was pooping...
I went to the hospital and Vivian was his nurse.. She told me he hadnt gone since this morning... I went in to the room and he told me it had been a false alarm.. was having gas.. thats good.. better to have gas than unstoppable diarrhea right?
Sorry to those of you who dont want to read about poop.. but this blog is based on Chris's leukemia, transplant, progress, complicatons, how it effects us, etc... and unfortunately right now, the poop is the only thing keeping him here... and if I am counting the hours between his poops and everyone else here is, its kinda the determining monumental occurances ... sorry
Chris and I had plans to go for a ride in the wheelchair later on around dinner time and watch a movie... Chris was having a good day. He had one small poop in the morning and none since.. just gas. I got a little excited thinking things are getting better...
Vivian also told us that if he orders white bread, that she can toast it in the nurse lounge.. wow! very nice... Chris hate the dining service toast cus its soggy and cold by the time he gets it... this is exciting news....
My parents came to visit between 230 and 530 or so... chris was in good spirits again... its a nice visit...
Then Vivian comes in and asks Chris if he knew they ordered a catscan of his bowels... NOPE we did not know... what a bummer.. Chris hadnt pooped in 14 hours PLUS overnight he only went once or twice... and now he had to drink the lovely bottle (or 2 bottles) or barium for the catscan.. that makes you poop normally.. ugh.. there goes the dry spell and seeing if he is getting better... and there goes the wheelchair ride...
Before things got crazy, he placed a phone call to brother Lew for his birthday.. the newlywed turned 22 today! No answer.. he musta been out partying...
He drank bottle one between 6 and 7pm and bottle 2 between 7 and 8pm
We put a movie on... Lady and the Tramp... and watched it... he pooped at 7pm after the drink.. and then again after 8... they took him to catscan at like 10pm
I waited til he got back and Sophie and I asked if he wanted toast.. he didnt... it was late.. I left .. it was probably close to midnight.. or later
He is in good hands with Sophie
Sunday... I woke up and went to Target on my way to the hospital.. I ran out of cashews and was craving them badly.. They are a staple in my poor diet these days... and I also bought 2 movies for me and chris... on DVD.. Enchanted and Open Season. Simple movies are good for us these days...
I have to take Jeanie's portable DVD player that she was going to throw out... we only have a VCR in the hospital room.. and chris can see better if the movie is more up-close...
I bought Superbowl napkins and plates and cups... I will bring them on Sunday for our hospital superbowl party... chris wont be able to see it as well as he would like but we will make the best of it...
I see Dr Strair at the hospital.. Vivian told me he wanted to see me and update me... he said he also didnt know about catscan so we would have to let all that barium get out of his system on sunday and re-look at his poop on monday and see if its getting better... he also said there was no final on the catscan, but that it looked fine... just inflammation (obviously, no surprise, because of all the diarrhea for a month+) I love seeing Strair.. he is perfect... he is direct, but compassionate, super intelligent, dedicated and without false hope, has a way of making me stay hopeful... he is the greatest doctor i will ever know...
Then, we got a surprise visit from Chris's dad, brother Tommy and Danny...
Chris was in the recliner... Vivian and Tracy got him to sit in it while I was still home... Chris seemed a little out of it, but was so excited to have a visit.
They brought more magazines for him to look at... he has to look at them slowly because of his eye, but something to pass the time and look at it...
His dad brought him a new bible, with bigger letters... which is great...
And, 2 M&M action figures.. so cute.. and a model car (Dodge Stealth i think)
They keep chris entertained.. its very good.... its nice to see them so often.. I know it makes chris happy... they stayed a few hours and were planning on making their routine trip to the Old Country Buffet in Edison.. they stop there often after visiting Chris..
Sophie comes on for the night. She makes him toast... he enjoys it immensely.. Sophie even toasted some italian babka sort of bread for him... she is so sweet... but he didnt like it.. so i got to eat it.. yummmmy! Shortly after, his tummy is aching so bad... the pepto, bentyl, gas x, opium, all dont help.. so eventually he gets morphine...
I go home to go to sleep... I wont see Sophie til the weekend
Monday comes and I go to work...
I visit Chris at lunch. Nazmin is his nurse. she told me he didnt want to eat.. but he did do physical therapy and occupational therapy
Chris is seeming depressed again... he doesnt have the tv on.. makes me so sad... he says "TV sucks" I dont know what to do for him because i know he cant see as well as he would like to so he cant enjoy tv or books...
I have to find something for him .. i dont know what...
They are having a baby shower for maryKate the head nurse.. she is prego.. due soon...
At lunch, I asked chris what the docs said and he said "same.." I asked if they talked about the poops.. he said she asked him about it and he told them it was the same.. I freaked.. i dont know why he doesnt tell them he has more gas.. and make sure she knows about catscan... ugh...
anyways, i go back to work and i decided to call Anne Tyno, the nurse practitioner.. She said she talked to Strair in the morning and she knew about it.. they would wait for the barium to get out and see how the poops are... she also noticed that chris was real sleepy in the morning and had different things to say when the doctor and her came back together later... it was good to talk to her...
Chaplain Sharon stopped in when I was there for lunch. She told us she would see Chris on tuesday but had a conference on wed and thursday...
I went back to work and came back afterwards
Jen was his nurse at night. I stayed until late .. we watched Fantasia.. and then it was bedtime
Tuesday January 27th.. I went to work... I know he had Nazmin again.. I called her during the day... my parents and I were going to be there after work. Nazmin said he was doing ok.. I planned to sleep over because snow was in the forecase for Tuesday night into Wednesday. and that way, if they snow was bad, i would be stuck there and not at home.. plus i would be closer to work..
But anyways, I got to the hospital around 530/6... when i walked in, Dr Sedov was doing a bone marrow biopsy... i was shocked.. i watched the end.. i saw him take out bone and they smeared some on glass slides...
He told me that Chris was just given morphine and ativan.. he was pretty out of it...
Dr Sedov explained they just wanted to check... his counts are low and they think its from all the immunosuppresants.. but want to make sure.. that scares the crap out of me.. I told him that his poop seemed a bit mushier the last 2 days.. he basically said it was still happening and although it wasnt getting worse.. it needs to stop... so they are going to watch for another day or 2 and then maybe add another drug...
My parents arrived and we talked while chris slept.. he woke up here and there but was out of it...
My parents left and i hung out.. he woke up.. we talked.. and i eventually went to bed.. he didnt even remember them doing the biopsy,, I tried to watch american idol, but the channel 5 blacked out 5 minutes into the show.. i was so mad...
Wedneday morning, i woke up and decided to work from the hospital,... although i couldnt get into work email.. vpn wasnt working from here... so annoying. so i did paperwork i had with me.. and then checked email from home wednesday night...
Rose was his nurse.. it was good to be there all day cus i got to see the doctors...
I knew we could possibly get preliminary bone marrow results today... if not, then tomorrow
his hip was bothering him.. it made me so nervous because bone marrow is made in the hip.. they thought it could be from the bone marrow biopsy.. but it was his other hip.. ahhhhh and more anxiety
he did physical therapy in the bed... hip hurt too much to get up... Rose was changing him in bed and was pressing on his hip.. he was in such pain... she was kinda rough with him after knowing it hurt the rest of the day.. ugh
Wedneday evening, Isabel was on! yay! I stayed til late at night... we watched Toy Story.. it was nice...
Oh .during the day, John the social worker came to see us... 2 weeks ago he talked to us and said he would look into help with long term disability. Chris thought he applied when he applied for state short term in the summer... Now, he came to tell us we should call a number.. and blah blah blah...
I did... I have a phone interview with social security for chris on the 13th of february... ugh.. so long.. but considering how long chris (we) waited to get this resolved... its ok... i could kick myself for not getting this started sooner.. but time flies..and when chris was supposed to work on it months ago, he would wind up back in hospital... and then i was busy and stressed and preoccupied and before you know it.. its so late.. and he is so broke...
We also had to pay his verizon bill today.. he was 2 months late.. i never paid his bills before.. he was usually well enough between treatments to take care of these things... i am getting worried cus he wont get income for another 3 months at this point and he doesnt have enough for all this bills.. especially when we have pharmacy bills ... i can help with those... but not all the rest
I got them to drop his cell phone plan down... he has a damn smart phone.. too much $$ now... plus he can barely use it.. i have to buy him a simple regular cell...
he signed me and my car up for some damn auto insurance in case something breaks.. and now i need to figure out if i can break the contract.. i dont think he realized he wouldnt have enough to pay for it.. and i wasnt aware of him signing up for it until after... craziness... how time flies and things get out of hand
John, the social worker, also told us that the Lymphoma and Leukemia Association(i think thats what its called) can help give ideas for fundraisers or planning a little.. I think i really need to look into this... it will be a lot of work but i think he deserves it and could really use the money....
So, maybe this weekend I will do some research...
Anyways, Isabel takes care of him.. and I go home
I catch up on the Bachelor.. i love that show
Oh, did I mention, American Idol blacked out AGAIn tonight? ugh
So, my mom calls me and tells me she thinks my dad is getting laid off on Thurs morning... my dad works for Anheuser Busch which is now Anheuser Busch InBev (blah)... he knew there was a possibility.. and it sounds like its happeneing tomorrrow morning.. boss asked him to come in at 6am.. he was supposed to be off on thursday to take care of a court thing for an accident from 4 years ago... ugh... when it rains it pours
Thursday, Jan 29th, I go to work.. Chris has Liz.. I went to see him at lunch... I was soooo nervous about the biopsy... so nervous... but they told me the doc thinks his hip is his muscle.. i felt it and yes, it was very tender... i offered bengay and he said ok.. and guess what?? It made him feel better.. yay! its not his bone
it was probably so easy for him to pull the muscle since he isnt walking and has to turn so much in bed for the nurses...
Chris seemed ok otherwise...
I was told the doc would be in around 3pm to give some results..
Luckily, I ran into Dr Sedov on my way out.. he told me the preliminaries looked clear... woohoo.. what a relief ...
I went back to work... and felt a little better
After work, my dad was there to see chris.. he brought pastina.. chris wanted to try some pasta.. plain... my dad was indeed laid off today... its bittersweet.. the company isnt going to be the same now that they have merged with InBev...poooey... but after 21 years.. it was very fast.. hopefully him and the guys from all these years will get together for a dinner or something... poor dad.. now my brother's friends will have to buy their own beer.. lol
My brother and his girlfriend heather came by.. chris wanted to meet her...
We all watched American Idol together
Chris was sleepy cus he was gettign red blood... but it was nice regardless
then i stayed til 11 or so... and said goodnight
Sophie was there.. apparently she was scheduled and didnt know.. bummer cus i thought she would be there friday and saturday and now i dont know who he wil get friday night
Oh, Thursday night, chris let me give him a pedicure... he needed it bad... dry gross feet... but he hates having them exposed cus he gets cold.. but i gave him a manicure during the week so now he is all good
His mustache is grown in.. starting to get hair back on head.. awwww
Liz got him to eat broth and the pastina and iced tea... so proud...
Ok... Friday i went to work.. didnt hear from him all day..
I got there after work and Liz said he had one poop all shift (12 hours) then he went again around 8pm.. but its now 1130pm and doing good
Isabel is on again.. she switched with Sophie cus sophie doesnt want to be home with her hubby for superbowl..lol.. so maybe we will get her tomorrow and sunday
i was gonna sleep here tonight cus i have Seans birthday party from 12-4 tomorrow.. but i just realized my registration expires tomorrow and i normally pay it online but i am not sure if i know where the paper is..otherwise i have to get to the DMV in the morning ugh
They also gave remicade again today.. it didnt work last month.. but they are trying it again
chris is ok.. we chatted tonight... he ate a little bit for Liz today and he had a Boost.. moving up in the world
Well. thats my novel for today...
I wish i didnt get so backed up.. but it seems ok for a day or 2 if nothing major happens.. then add in a few exhausting days and then bigger news and falling asleep at the laptop, and whammo.. its been over a week...
love ya all
Jenn
I went to work... and watched 30 minutes of the inauguration from someone's office.
Then I went to see Chris. He was super happy and awake
He said it was a positive day! Turns out Liz spend a lot of the day in Chris's room and they watched inauguration coverage. Chris was pumped up and happy
Padma was his nurse at night. Hadnt had her in a while... Chris was happy...
I found out that they started pentastatin today. Its for 3 days.. So, he got it Tues, Wed, and Thurs evening. I ran into Dr Sedov when I got to the hospital and he filled me in. Its an immunosuppresent. Might bring his blood counts down. It is further suppressing his immune system to try to control the Graft Vs Host Disease (GVHD) - they dont want to wait any longer to try a new drug. His diarrhea wasnt slowing down. It can take 4-7 days for it to start working.
I cannot remember whether I gave him a ride in the wheelchair today.. I do not think I did .. but its been almost a week since i blogged...
I know Chris called his brother Lew tonight. Lew was getting married the next day, and he had tried to call Lew over the weekend, or a few days prior, and Lew told me he wasnt home... so Chris wanted to call Lew before he got married. They talked for a little while and that was that...
We chatted and watched some of the inaugural ball coverage. Chris was in a good mood.. and was falling asleep naturally from his day...
Oh, the psychiatrists were in during the day... They suggested Ativan (hahaha.. like he never had that before) and ambien for sleep... so they were gonna give that too him at night if he needs it...Padma is his nurse tonight... she takes good care of Chris and he likes her too...
He got sleepy and I went home to finish watching Obama and Michelle dancing
Wednesday Jan 21st... Chris had another good day...
I am blogging a week later so I cannot really remember too many details...
I cannot remember if his nurse was Valsa... bu I am pretty sure it is...
I am pretty certain that I came to visit during lunch.
My parents came to visit and were so happy to see Chris in such a good mood. He looks much better than he had been. AND he is talking and conversing so much more... He hadnt really had enough energy to talk too much for a couple weeks....
We might have taken another ride in the wheelchair.. I know we took a ride once during the week...
I know I stopped for Dunkin Donuts tea for Chris and I either tonight or maybe the next night... and I got a box of munchkins for the nurses.. I am addicted to Dunkin Donuts tea... yummo... anyways, chris can have it too -- I gave him a munchkin.. i felt so bad but he wanted it so bad and its only a lil munchkin.. he didnt seem any worse afterwards...
Jen (Chris's new sister in law) texted me to let me know that they were officially married. She also posted pics on her myspace. Jenn & Lew got married at the court house near the air force base that he is stationed at in Florida. It was small and casual. Jen's parents and some of their friends were in attendance. There are plans to have a party or reception down the road... hopefully by then Chris will be cleared to travel. He is not going to be able to fly for quite a while (year+) because of germs and whatnot. but once he can be away from home for a week, we can drive for our trips and vacations
We watched American Idol and I eventually went home to sleep
Thursday Jan 22nd. I told Chris that I would not be able to come during the work day today. We had an open house for interviews during the day ... I was not able to break away to come see him.
Chris actually talked to me on the phone today. I called him and he called me back. He told me he hadnt really gone to the bathroom very much. He sounded good... It was nice to be able to talk to him while I was at work. Its been a long time since he has been in the mood for phone calls...Chris told me that he had some new nurse who he never met before... Work was super busy with all our interviews.. but when it was all over, I went straight to the hospital to hang out with Chris...
I saw Tracy. I love her. She was on nights until a week or so ago...
She was one of the nurses who took care of Chris back when Chris was sent to Bone Marrow Unit in June. Nancy, Tracy, Vivian, Padma, Sophie and Liz were the nurses who were assigned to Chris back then. Tracy struck me as a sweetheart from Day 1. Anyhoo, I got to the hospital Thursday and she said hi.. we chatted a bit. She told me that Rose was his nurse. I was confused since Chris told me he never met his nurse before today.
Tracy is so cute. Seems so compassionate... very friendly... strikes me as someone who would be a great mom.. but i was pretty sure she had no kids...she seems kinda bummed about that
I talked to her a few nights prior and found out she is 35, single :( I would have sworn she is no older than me (29)... Apparently the unit clerk is constantly looking to hook her up.. I want to also... she deserves a nice cute boyfriend... so I am keeping my eyes open... if you know a successful cute single guy (I assume in central NJ; I assume in his 30s) keep her in mind... these nurses are like our family and I wish them all nothing but happiness...
Thank goodness I saw Tracy or i woulda been so confused.. She told me Karolina was his nurse in the morning... Rose didnt come in til 3pm or so. So Chris was NOT losing his mind!
Padma came on for the night... I went home after hanging with him all night.
Friday Jan 23rd, I worked all day and Rose was his nurse. When I got there after work, I was prepared to hang out and then go home to sleep... wake up early on Saturday to spend the whole day with Chris because I had our friend Eileen's birthday party to go to on Saturday night... My mom and I were to go to Eileen's surprise party saturday 7pm... which would mean I would have to leave the hospital on Saturday by 520pm to get home and get ready.. that was gonna leave chris alone for quite a long time ...and my dad was going to go keep Chris company at the hospital... My dad and mom had plans to go out on Friday night...
So, I was hanging at the hospital Friday night and my mom calls me after 8pm telling me that she got a call and that the party had been changed to Friday night and my mom was late. I guess they thought they told my mom... but i obviously couldnt get home and ready in time to make it to a party that had already started... So, my mom had to rush to get ready and go without me.. I dont know what my dad wound up doing... but i felt bad for my mom... I think I made her feel bad cus i mentioned that i didnt get to see the birthday card... and then I stayed even later at the hospital, because I no longer had to rush in the morning... but I was really bummed for 3 reasons.
1- I was really looking forward to a girls night out. My mom and I got a really nice gift for Eileen and I was excited to see her open it... I could use a night out.. and my mom's friend made a personalized card for Eileen that i hadnt even gotten to see (my mom talks about her cards all the time)...
2- Not only do I not get out often, but a close friend of mine, Shannon, also was having a surprise party the same night (Saturday) and I said no to the party because of Eileen's. I was bummed that I couldnt go to Shannon's and now it turns out, I could have. I have no luck. It was too late .. I was a bad girl and didnt remember to RSVP to Shannon's on time... by the time I RSVPd to her friend, i woulda felt like an idiot calling on the day-of saying i could come afterall.. anyone who knows me really well knows that i hate feeling like i am imposing or whatever.. and it would be totally out of my character to go to a party after saying i wasnt coming... plus i was invited with guest and would have liked to bring someone with me cus i dont really know anyone besides Shannon.. anyways..
3- I was making really fabulous appetizers for the party. And I bought brie and ordered special sourdough bread and my mom roasted a chicken (to make chicken salad) etc etc.. and now i had nothing to make these appys for... I was just bummed overall. i dont really eat brie cheese normally...
Now, back to the whole thing about me not getting out.. its no one's fault. My priority is Chris... I work all day.. so I WANT to see Chris after work... and he is alone all day.. pretty depressed about being stuck within the 4 walls of the room and that he is still there after 2 months... Since no one visits during the day, I want to keep him company whenever I can....
So, by the time I leave the hospital, its too late for my friends to hang out (usually)... My friends either have babies, go to sleep too early (even my brother is either in bed, or hanging with his girlfriend by the time I get home) And i dont get invited to that many parties (that i could plan for) so even though I am totally fine with not getting out much, i could really use a night out for a few drinks...
I always have intentions of pouring a glass of wine when i get home from the hospital (between 10pm and midnight usually during the week.. depending on chris's sleepiness) but then i fall asleep.. or decide to eat first if i am hungry and then dont want wine
Anyways, Friday night I hung out with chris and I cannot remember if we watched a movie or not.. but i went home around midnight and my mom had just gotten home from the party
Oh, Nicole (the really nice, very caring Wednesday/Friday head nurse) saw me on Friday. I had asked to talk to her or Mary Kate before they left for the day (I got there by 530 and they leave 8pm or later usually) also saw the doctor and he told me that the pentastatin takes 4-7 days to show that its working.. and its now day 4
So, we have to wait.. more waiting... he also told me that they put him back on morphine (they have him on the fentinol patch and had him on IV fentinol for breaththru pain). Chris had told the docs that that was not working so they put him back on morphine for breahthru
Anyways, Nicole comes to talk to me.. I asked her about 2 things
1- Most nurses will not give morphine close to chris's arm (close to the pic line)- Chris asks for it close to him.. and its because he likes to "feel" it... lately, he says he doesnt feel it. I know chris does have pain.. but i also am pretty certain that he also likes it because it helps him sleep or "feel good" and i know he feels like crap often.. but one or 2 nurses will give it to him close.. and one says "i will do anything for him" Well, thats great. I know chris likes her.. but it could drop his blood pressure.. and if its so bad for it to be done like that.. and thats the way its being explained to me, then i have a right to be disturbed that a couple will do it.. mostly because i dont need him getting an addiction any easier.. i dont think its fair to give him mixed stories on it.. and to give him a high when other nurses wont.. hopefully i am making sense to you...
Nicole explains that it is supposed to be given up higher and slowly.. but that if its given closer very slowly (over 2 minutes) and with saline, it is OK... well i am not totally happy but atleast it made me feel a little better. I really could have complained about the nurse cus i have other issues but i dont want to cause any more chaos...
2- The doctors put chris on a regular diet but only so that he can order toast and crackers. Well Chris isnt able to dial the phone really well on his own because of his eye... and only some nurses are proactive about his eating... or noticing what he can really eat. He should only be having broth and jello and juice and tea.. clear liquids, besides the toast and crackers... Well, during the day Friday, he didnt order lunch, so the default meal came and chris cheated and tried the macaroni and cheese! poor guy wanted it so bad.. and had belly cramps, but he has been having belly cramps for a day or 2 anyways.... but i asked nicole if they could put a note on his chart about his diet and having the nurse help him order... so she was cool about that.. she always helps..
Lastly, she said "oh, I gave you Sophie tonight.. i know you like her" She is awesome... We do love Sophie... And that meant we would have Sophie Fri, Sat, and Sunday.. woohoo! Anyone that night would have been fine because Tanya, Isabel, Sophie, and Kathy were on... but we are happy nonetheless ;)
Anyways, I went home late at night and then got to sleep a bit at home...
Saturday I woke up and took my time getting my day started... I called him and he told me he thought he was pooping...
I went to the hospital and Vivian was his nurse.. She told me he hadnt gone since this morning... I went in to the room and he told me it had been a false alarm.. was having gas.. thats good.. better to have gas than unstoppable diarrhea right?
Sorry to those of you who dont want to read about poop.. but this blog is based on Chris's leukemia, transplant, progress, complicatons, how it effects us, etc... and unfortunately right now, the poop is the only thing keeping him here... and if I am counting the hours between his poops and everyone else here is, its kinda the determining monumental occurances ... sorry
Chris and I had plans to go for a ride in the wheelchair later on around dinner time and watch a movie... Chris was having a good day. He had one small poop in the morning and none since.. just gas. I got a little excited thinking things are getting better...
Vivian also told us that if he orders white bread, that she can toast it in the nurse lounge.. wow! very nice... Chris hate the dining service toast cus its soggy and cold by the time he gets it... this is exciting news....
My parents came to visit between 230 and 530 or so... chris was in good spirits again... its a nice visit...
Then Vivian comes in and asks Chris if he knew they ordered a catscan of his bowels... NOPE we did not know... what a bummer.. Chris hadnt pooped in 14 hours PLUS overnight he only went once or twice... and now he had to drink the lovely bottle (or 2 bottles) or barium for the catscan.. that makes you poop normally.. ugh.. there goes the dry spell and seeing if he is getting better... and there goes the wheelchair ride...
Before things got crazy, he placed a phone call to brother Lew for his birthday.. the newlywed turned 22 today! No answer.. he musta been out partying...
He drank bottle one between 6 and 7pm and bottle 2 between 7 and 8pm
We put a movie on... Lady and the Tramp... and watched it... he pooped at 7pm after the drink.. and then again after 8... they took him to catscan at like 10pm
I waited til he got back and Sophie and I asked if he wanted toast.. he didnt... it was late.. I left .. it was probably close to midnight.. or later
He is in good hands with Sophie
Sunday... I woke up and went to Target on my way to the hospital.. I ran out of cashews and was craving them badly.. They are a staple in my poor diet these days... and I also bought 2 movies for me and chris... on DVD.. Enchanted and Open Season. Simple movies are good for us these days...
I have to take Jeanie's portable DVD player that she was going to throw out... we only have a VCR in the hospital room.. and chris can see better if the movie is more up-close...
I bought Superbowl napkins and plates and cups... I will bring them on Sunday for our hospital superbowl party... chris wont be able to see it as well as he would like but we will make the best of it...
I see Dr Strair at the hospital.. Vivian told me he wanted to see me and update me... he said he also didnt know about catscan so we would have to let all that barium get out of his system on sunday and re-look at his poop on monday and see if its getting better... he also said there was no final on the catscan, but that it looked fine... just inflammation (obviously, no surprise, because of all the diarrhea for a month+) I love seeing Strair.. he is perfect... he is direct, but compassionate, super intelligent, dedicated and without false hope, has a way of making me stay hopeful... he is the greatest doctor i will ever know...
Then, we got a surprise visit from Chris's dad, brother Tommy and Danny...
Chris was in the recliner... Vivian and Tracy got him to sit in it while I was still home... Chris seemed a little out of it, but was so excited to have a visit.
They brought more magazines for him to look at... he has to look at them slowly because of his eye, but something to pass the time and look at it...
His dad brought him a new bible, with bigger letters... which is great...
And, 2 M&M action figures.. so cute.. and a model car (Dodge Stealth i think)
They keep chris entertained.. its very good.... its nice to see them so often.. I know it makes chris happy... they stayed a few hours and were planning on making their routine trip to the Old Country Buffet in Edison.. they stop there often after visiting Chris..
Sophie comes on for the night. She makes him toast... he enjoys it immensely.. Sophie even toasted some italian babka sort of bread for him... she is so sweet... but he didnt like it.. so i got to eat it.. yummmmy! Shortly after, his tummy is aching so bad... the pepto, bentyl, gas x, opium, all dont help.. so eventually he gets morphine...
I go home to go to sleep... I wont see Sophie til the weekend
Monday comes and I go to work...
I visit Chris at lunch. Nazmin is his nurse. she told me he didnt want to eat.. but he did do physical therapy and occupational therapy
Chris is seeming depressed again... he doesnt have the tv on.. makes me so sad... he says "TV sucks" I dont know what to do for him because i know he cant see as well as he would like to so he cant enjoy tv or books...
I have to find something for him .. i dont know what...
They are having a baby shower for maryKate the head nurse.. she is prego.. due soon...
At lunch, I asked chris what the docs said and he said "same.." I asked if they talked about the poops.. he said she asked him about it and he told them it was the same.. I freaked.. i dont know why he doesnt tell them he has more gas.. and make sure she knows about catscan... ugh...
anyways, i go back to work and i decided to call Anne Tyno, the nurse practitioner.. She said she talked to Strair in the morning and she knew about it.. they would wait for the barium to get out and see how the poops are... she also noticed that chris was real sleepy in the morning and had different things to say when the doctor and her came back together later... it was good to talk to her...
Chaplain Sharon stopped in when I was there for lunch. She told us she would see Chris on tuesday but had a conference on wed and thursday...
I went back to work and came back afterwards
Jen was his nurse at night. I stayed until late .. we watched Fantasia.. and then it was bedtime
Tuesday January 27th.. I went to work... I know he had Nazmin again.. I called her during the day... my parents and I were going to be there after work. Nazmin said he was doing ok.. I planned to sleep over because snow was in the forecase for Tuesday night into Wednesday. and that way, if they snow was bad, i would be stuck there and not at home.. plus i would be closer to work..
But anyways, I got to the hospital around 530/6... when i walked in, Dr Sedov was doing a bone marrow biopsy... i was shocked.. i watched the end.. i saw him take out bone and they smeared some on glass slides...
He told me that Chris was just given morphine and ativan.. he was pretty out of it...
Dr Sedov explained they just wanted to check... his counts are low and they think its from all the immunosuppresants.. but want to make sure.. that scares the crap out of me.. I told him that his poop seemed a bit mushier the last 2 days.. he basically said it was still happening and although it wasnt getting worse.. it needs to stop... so they are going to watch for another day or 2 and then maybe add another drug...
My parents arrived and we talked while chris slept.. he woke up here and there but was out of it...
My parents left and i hung out.. he woke up.. we talked.. and i eventually went to bed.. he didnt even remember them doing the biopsy,, I tried to watch american idol, but the channel 5 blacked out 5 minutes into the show.. i was so mad...
Wedneday morning, i woke up and decided to work from the hospital,... although i couldnt get into work email.. vpn wasnt working from here... so annoying. so i did paperwork i had with me.. and then checked email from home wednesday night...
Rose was his nurse.. it was good to be there all day cus i got to see the doctors...
I knew we could possibly get preliminary bone marrow results today... if not, then tomorrow
his hip was bothering him.. it made me so nervous because bone marrow is made in the hip.. they thought it could be from the bone marrow biopsy.. but it was his other hip.. ahhhhh and more anxiety
he did physical therapy in the bed... hip hurt too much to get up... Rose was changing him in bed and was pressing on his hip.. he was in such pain... she was kinda rough with him after knowing it hurt the rest of the day.. ugh
Wedneday evening, Isabel was on! yay! I stayed til late at night... we watched Toy Story.. it was nice...
Oh .during the day, John the social worker came to see us... 2 weeks ago he talked to us and said he would look into help with long term disability. Chris thought he applied when he applied for state short term in the summer... Now, he came to tell us we should call a number.. and blah blah blah...
I did... I have a phone interview with social security for chris on the 13th of february... ugh.. so long.. but considering how long chris (we) waited to get this resolved... its ok... i could kick myself for not getting this started sooner.. but time flies..and when chris was supposed to work on it months ago, he would wind up back in hospital... and then i was busy and stressed and preoccupied and before you know it.. its so late.. and he is so broke...
We also had to pay his verizon bill today.. he was 2 months late.. i never paid his bills before.. he was usually well enough between treatments to take care of these things... i am getting worried cus he wont get income for another 3 months at this point and he doesnt have enough for all this bills.. especially when we have pharmacy bills ... i can help with those... but not all the rest
I got them to drop his cell phone plan down... he has a damn smart phone.. too much $$ now... plus he can barely use it.. i have to buy him a simple regular cell...
he signed me and my car up for some damn auto insurance in case something breaks.. and now i need to figure out if i can break the contract.. i dont think he realized he wouldnt have enough to pay for it.. and i wasnt aware of him signing up for it until after... craziness... how time flies and things get out of hand
John, the social worker, also told us that the Lymphoma and Leukemia Association(i think thats what its called) can help give ideas for fundraisers or planning a little.. I think i really need to look into this... it will be a lot of work but i think he deserves it and could really use the money....
So, maybe this weekend I will do some research...
Anyways, Isabel takes care of him.. and I go home
I catch up on the Bachelor.. i love that show
Oh, did I mention, American Idol blacked out AGAIn tonight? ugh
So, my mom calls me and tells me she thinks my dad is getting laid off on Thurs morning... my dad works for Anheuser Busch which is now Anheuser Busch InBev (blah)... he knew there was a possibility.. and it sounds like its happeneing tomorrrow morning.. boss asked him to come in at 6am.. he was supposed to be off on thursday to take care of a court thing for an accident from 4 years ago... ugh... when it rains it pours
Thursday, Jan 29th, I go to work.. Chris has Liz.. I went to see him at lunch... I was soooo nervous about the biopsy... so nervous... but they told me the doc thinks his hip is his muscle.. i felt it and yes, it was very tender... i offered bengay and he said ok.. and guess what?? It made him feel better.. yay! its not his bone
it was probably so easy for him to pull the muscle since he isnt walking and has to turn so much in bed for the nurses...
Chris seemed ok otherwise...
I was told the doc would be in around 3pm to give some results..
Luckily, I ran into Dr Sedov on my way out.. he told me the preliminaries looked clear... woohoo.. what a relief ...
I went back to work... and felt a little better
After work, my dad was there to see chris.. he brought pastina.. chris wanted to try some pasta.. plain... my dad was indeed laid off today... its bittersweet.. the company isnt going to be the same now that they have merged with InBev...poooey... but after 21 years.. it was very fast.. hopefully him and the guys from all these years will get together for a dinner or something... poor dad.. now my brother's friends will have to buy their own beer.. lol
My brother and his girlfriend heather came by.. chris wanted to meet her...
We all watched American Idol together
Chris was sleepy cus he was gettign red blood... but it was nice regardless
then i stayed til 11 or so... and said goodnight
Sophie was there.. apparently she was scheduled and didnt know.. bummer cus i thought she would be there friday and saturday and now i dont know who he wil get friday night
Oh, Thursday night, chris let me give him a pedicure... he needed it bad... dry gross feet... but he hates having them exposed cus he gets cold.. but i gave him a manicure during the week so now he is all good
His mustache is grown in.. starting to get hair back on head.. awwww
Liz got him to eat broth and the pastina and iced tea... so proud...
Ok... Friday i went to work.. didnt hear from him all day..
I got there after work and Liz said he had one poop all shift (12 hours) then he went again around 8pm.. but its now 1130pm and doing good
Isabel is on again.. she switched with Sophie cus sophie doesnt want to be home with her hubby for superbowl..lol.. so maybe we will get her tomorrow and sunday
i was gonna sleep here tonight cus i have Seans birthday party from 12-4 tomorrow.. but i just realized my registration expires tomorrow and i normally pay it online but i am not sure if i know where the paper is..otherwise i have to get to the DMV in the morning ugh
They also gave remicade again today.. it didnt work last month.. but they are trying it again
chris is ok.. we chatted tonight... he ate a little bit for Liz today and he had a Boost.. moving up in the world
Well. thats my novel for today...
I wish i didnt get so backed up.. but it seems ok for a day or 2 if nothing major happens.. then add in a few exhausting days and then bigger news and falling asleep at the laptop, and whammo.. its been over a week...
love ya all
Jenn
Monday, January 19, 2009
Weekend Update, Including Chris not wanting me to leave & Cruises Around the Hospital
Saturday morning... I woke up at home and went ot breakfast with my parents. They dropped me off at the hospital around 10:30am...
I got there and Chris was up... Dr. Strair had already been in -- Chris told me that Dr Strair told him they were changing some meds around for his tremors... I knew this the day before but I wasnt sure if there was anything brand new... and Chris was not sure either...
Valsa was his nurse and I told her I wanted to talk to Strair if he walked around again...
3 minutes later, Strair was in the room...
He gave me an update... Chris is back on Neurotin- should help with tremors. They took him off Cyclosporine, which I knew... replaced by an anti-rejection pill. Cool. They also added another pill to replace the blood pressure med that they had him on
Strair basically said they would see how the Remicade is working and add another graft vs host med before the end of the week if it doesnt work
He had to get to his rounds.. but I asked him if I could wheel him (in a wheelchair) around the halls and whatnot to get him out of the room. (I had asked head nurse Nicole this yesterday)
And he thought it was a great idea. Strair also mentioned that morphine was on the orders when he needs it.. but nothing else... sounds like Strair wants him to stay as un-medicated as possible... Ativan is on order for anxiety, which can also help with sleep
So, Valsa un-hooked Chris from the I-Vs and I took him out of the room. The nurses were like "take him down to the lobby for a while" Soooo me and Chris got on the elevator and sat by the fireplace in the 1st floor lobby... I wheeled him all the way down to the Childrens Hospital.. then down to the atrium.... we stopped on 5north to see his old friends up there... we saw Jolenta...
Then we had to get to the 4th floor for chris to take a bathroom break... but when he was done, he wanted to go back out for more cruising... yay! So, we rode around all around the halls and then we came back... he was tired. Oh, at one point, Chris's pumps were beeping. So we called the bell. The receptionist hear them and acknowledged them when we called. I saw no nurses at the desk. I was pretty sure a lot of them were eating in the lounge.. which is fine.. but someone is covering... patients still get care during nurse breaks... I literally pushed hold 8 times... Each push gets you 3 minutes. Chris called again ... we waited... finally the nurse comes in and starts saying "I cant give you morphine.. i already gave it to you.. blah blah blah" So I interupted and said "thats not why we called... his machine has been beeping" She looked sorry.. but why wasnt the correct info relayed? I feel bad cus when I am not there, that machine beeps and beeps and beeps.. even chris was vocalizing being annoyed...
So, I had my dad come pick me up around 3pm and chris napped. When I got back a few hours later (7pm or so) Chris was excited for another ride!
The tech (someone I never saw before) was cleaning him up and then told us his nurse said maybe we should do it tomorrow instead. Chris was bummed. He was looking forward to the riding ever since I left. Sophie came in - she was not his nurse :( I told her he was bummed. Nina was his nurse but when she came in she said he could go as long as he was back by 10pm... that gave us 2 hours.. woohoo... We love Nina too... Chris does very well with her... She has a way of getting him to take his drugs easily and listens to her... She is a sweetie...
So we went for another ride. We went back up to 5north and were lucky to see Mary and Ade... his 2 favorite night nurses on the 5th floor. We finally got back to the 4th floor and Chris was able to get to sleep much easier....
Ade came up to visit later but chris was asleep...
Even though the diarrhea had eased up during the day, he had a rough night :( I slept there and he was up often. Luckily, he was able to sleep for a few hours before the diarreaha acted up...
Again, at 8am Ade came to visit, but Chris was getting cleaned up
We even saw Vanessa and Dustin, 5north techs Saturday night and Chris was happy to see them
Now it was Sunday morning. It was Christine Rabbath's birthday. I told Chris the day before and Sunday morning, that I had plans with Christine, our moms, and Dana, to do lunch. And, Christine was going to help me organize all Chris's bills, paperwork, etc...
So, Sunday morning, Chris finally recovered a bit from his rough night. Strair came in to see us. He asked who from psychiatry had been in to see him already. Chris said no one. Strair said someone would be coming Monday. He agreed Chris needs to feel better mentally...
He said that the graft vs host is only in the GI tract. So thats their concern. (I was thinking, atleast its not in multiple places at this point)
He said that if it wasnt better by Monday, they would add the new drug...
He was excited to hear Chris was getting out in the hallls (he saw us up on the 5th floor yesterday) He said "see you out in the halls later then"
Oh...
Dana gave Chris a shirt. I brought it to him Saturday. It says "Colorado.. Hows your Aspen?"
Get it? Hows your ass been? funny?
Chris loved the shirt
So I showed it to Dr Strair on Sunday morning. He got a kick out of it too
He said it would be great for him to wear once he is out of the hospital
We showed the nurses the night before. they got a kick out of it too
So, Sunday Strair was done with him and Chris wanted to go for a ride before I left. I had to leave by 1030am to get home and showered. Then be back in the evening
So, Chris calls for help. While we were waiting, we decided to try it alone.. you know.. the long wait.... I only had an hour or so. Chris put his arms around me and he stood up and I helped him into the wheelchair. Rose came in and she disconnected him -- we went a ride... back to childrens hospital.. back to 5north,... back to 4th... around the hall in circles...
Then i brought him back to his room... I told the nurses he was ready to get out of the wheelchair...
Chris looks sad. I asked what was wrong. He said he was not ready to go back to his room
my heart was BREAKING.... I wanted to cry... A few days ago he was kicking me out.. now he was loving the rides so much.... so Paula came in to help with wheelchair... but I mentioned to her that he was sad and she offered to take him for a ride.. i thought he was going to leap for joy.. he was like "lets go" so that made me feel better as I was leaving
This is exactly what I fear. I leave every weekend to do my things at home.. and he is usually like ok, whatever... but when he is like this, i feel so bad....
its not like the nurses have time to just be wheeling him around...
It is motivating him to keep up with physical therapy.. when we walk around, he says "walking next" or when we pass by the doors to outside he says "they will be my doors soon" Poor guy.. cant even imagine what he feels like.... but i am happy i can take him downstairs...
Anyways, I feel terrible that he doesnt want me to leave. It would have been a great time to have a visitor who coulda wheeled him around. A few weeks ago, visitors would watch him sleep or get very little conversation time... now he can be more interactive...
I had a great lunch with the Rabbath women and babies. Then Christine was a tremendous help with the paperwork. Ben & Sean are so cute. Ben loved his presents (we finally did Christmas presents) and then I went back to the hospital
I called rose on my way -- he was unhooked when I got back
So, we did a 2 hour ride again Sunday night.
I brought him Dunkin Donuts tea (he cant have coffee right now) and we had a date with tea as we rode around... the nurses were excited to see him in the halls... Carroll hadnt seen him in a couple days.. and Jen..
Oh, the night before, Sophie gave him chocolate, orange jelly, Polish candy.. shhh... didnt seem to do any damage.. but its clearly not a clear fluid... he was loving it...
So anyways, last night, Sunday night, after our long walk and stuff, he was tired... so we got him in bed and Nina was his nurse again... we had a good night... he fell asleep.. I slept over...
He only needed to go 2 times overnight...
This morning, we woke up and Karen is his nurse.
She wanted him to get up into the chair so early... intentions are good. but i know he wasnt ready... he wanted to get in the wheelchair and ride but not til the doctors did rounds so he could be done with that.. but she talked him into getting up into wheelchair.. then we waited and Chris was getting frustrated cus he wanted to be disconnected and go... Karen didnt realize that... Dr Strair had today off (i guess for holiday) so Dr Gahribo was seeing him.. but Strair was in the halls all day.. weird.. that man never gets a break... God Bless him
So, Gharibo sees him and is happy to see him in a wheelchair.. she says they will monitor bowel movements one more day before deciding.. also the psychiatrist is not coming (holiday...) bullshit... chris really wants to see him...
so tuesday supposedly.. i have been hearing "word" of this for a week... i think tomorrow it will really happen though
So Karen unhooks him and we are off... I am feeling very tense... he really needs to get out of the room.. he enjoys it.. its good for him mentally.. and i run into an obstacle after a breeze.. after an ostacle...annoying.. i think i come off as snotty but i dont care.... i dont know what to do
So, we get back from our walk. We saw Sharon. Chris initially was going to go into the recliner but was wiped from the walk.. so he wanted bed... Karen and Jen come in to help move him... and were talking about him going to chair... he isnt saying anything.. so I had to ask him if he wanted to say anything... he was JUST arguing with me and insisting he was too tired to sit up any more.. so I feel like the bad guy or the bitch for making him talk.. but i could tell he was uncomfortable... If i felt he was being lazy or silly i would keep my mouth shut
So, he rests briefly and agrees to eat some lunch
I go to warm up his tea and broth... and the toast he is now allowed to have... and they tell me physical therapy is here for him... its noon.. he JUST laid down after being up and about.. i am fuming internally... She comes in the room as I am giving chris his lunch and nurse says maybe do therapy first.. i want to scream... he needs to eat... first time all day... and he needs to get a break.. and what happened to PT being around 1:30 everyday? how can he plan? He is supposed to do his own getting around when they arent there... ya know?
So, PT notices lunch and she says she will be back in 15 minutes...
whew... So I told Chris he needs to speak up.. I feel like I look like the blocker or the bitch for opening my mouth and he told me he would and stuff... he also told me to go rattle some chains...lol.. he was annoyed about the inconsistancies
So... I saw the outcomes manager nurse Elena and spoke with her.. and PT...
Chris did physical therapy and I watched... She asked me to follow him with the wheelchair as they held him up with chris holding the walker... I was confused.. there was NO room behind him for the wheelchair.. and why??? arent they supposed to make sure he doesnt fall? ugh
So, i am looking at the foot rests on the wheelchair and i am thinking.. if he starts falling.. the wheelchair isnt going to catch him.. his butt will never make it to the seat... but i shut up
He takes a few steps slowly.. i am proud.. but it sucks how hard it is for him
Therapist told me he was able to walk a bunch more steps than that last week but its ok, meds and stuff cause weakness to fluctuate during the progress
So... he gets weak and is falling... i had to fight to get chair behind him.. "told u so"
Anyways... before falling into chair,, he was getting dizzy... she told him his body is not used to being in that position... so she asked if he could do leg exercises and he did... the dizziness slowly went away
She didnt stay too long.. asked him to sit in wheelchair for a while.. mentioned sitting there for an hour and having lunch in the chair.. ummm he just ate duh...
anyways.. i sat hext to him until he was ready for bed...
He finally dozed off and the rehab doctor came.. DO WE HAVE TO WAKE HIM UP? are you that important? i mean, he isnt going to rehab that soon...
so he is alarmed at being woken up...
Then Occupational Therapy came and he was just beat...
He had more diarrhea... so i guess we will see how the night goes and they will make a decision about new drug tomorrow
ugh... I feel so bad for him
Chris started to freak out a little bit and i calmed him down...
Isabel is back tonight.. love her
He is sleeping now..
I am gonna get going.. I have been here for 27 hours... time for home.. time for dinner and Rex and shower....
I pray her has a good night... maybe we will get a miracle and his diarrhea will stop tonight and tomorrow will be better.. new president new health? I hope...
Tonight he said "come here and make me not freak out" so i did.. gave him the pep talk... i begged him to sit up whenever he can and take deep breaths.. reminded him how high risk he is for stuff and pray he continues to be motivated... ugh... i told him to occupy himself more during day so that he sleeps easier at night..
but i just want the Graft Vs Host to settle down
He said something funny to me earlier...
He was saying how perfect i am.. something about having me in his life now and whatever.. anyways.. i wish i could quote it.. but he said something about perfect cheesiness... and said it was like something perfect and then adding cheese and melting it and it being so yummy and good..lol.. he said it was a food metaphor.. very cute.. but funny...
Oh, and Olivia is a child prodigy.. she plays the piano like a champ... girl is going to juliard one day... jeanie sent me a video of her playing piano yesterday and chris and i were both super impressed
Well, tomorrow is inauguration. i hope i can see it somewhere at work... not sure if i will get out to see chris at lunch.. so i am gonna try to see him in the morning before work...
I will pray extra hard tonight... there are a lot of people who need it... Jeanie's friends & everyone...
love you all
jenn
I got there and Chris was up... Dr. Strair had already been in -- Chris told me that Dr Strair told him they were changing some meds around for his tremors... I knew this the day before but I wasnt sure if there was anything brand new... and Chris was not sure either...
Valsa was his nurse and I told her I wanted to talk to Strair if he walked around again...
3 minutes later, Strair was in the room...
He gave me an update... Chris is back on Neurotin- should help with tremors. They took him off Cyclosporine, which I knew... replaced by an anti-rejection pill. Cool. They also added another pill to replace the blood pressure med that they had him on
Strair basically said they would see how the Remicade is working and add another graft vs host med before the end of the week if it doesnt work
He had to get to his rounds.. but I asked him if I could wheel him (in a wheelchair) around the halls and whatnot to get him out of the room. (I had asked head nurse Nicole this yesterday)
And he thought it was a great idea. Strair also mentioned that morphine was on the orders when he needs it.. but nothing else... sounds like Strair wants him to stay as un-medicated as possible... Ativan is on order for anxiety, which can also help with sleep
So, Valsa un-hooked Chris from the I-Vs and I took him out of the room. The nurses were like "take him down to the lobby for a while" Soooo me and Chris got on the elevator and sat by the fireplace in the 1st floor lobby... I wheeled him all the way down to the Childrens Hospital.. then down to the atrium.... we stopped on 5north to see his old friends up there... we saw Jolenta...
Then we had to get to the 4th floor for chris to take a bathroom break... but when he was done, he wanted to go back out for more cruising... yay! So, we rode around all around the halls and then we came back... he was tired. Oh, at one point, Chris's pumps were beeping. So we called the bell. The receptionist hear them and acknowledged them when we called. I saw no nurses at the desk. I was pretty sure a lot of them were eating in the lounge.. which is fine.. but someone is covering... patients still get care during nurse breaks... I literally pushed hold 8 times... Each push gets you 3 minutes. Chris called again ... we waited... finally the nurse comes in and starts saying "I cant give you morphine.. i already gave it to you.. blah blah blah" So I interupted and said "thats not why we called... his machine has been beeping" She looked sorry.. but why wasnt the correct info relayed? I feel bad cus when I am not there, that machine beeps and beeps and beeps.. even chris was vocalizing being annoyed...
So, I had my dad come pick me up around 3pm and chris napped. When I got back a few hours later (7pm or so) Chris was excited for another ride!
The tech (someone I never saw before) was cleaning him up and then told us his nurse said maybe we should do it tomorrow instead. Chris was bummed. He was looking forward to the riding ever since I left. Sophie came in - she was not his nurse :( I told her he was bummed. Nina was his nurse but when she came in she said he could go as long as he was back by 10pm... that gave us 2 hours.. woohoo... We love Nina too... Chris does very well with her... She has a way of getting him to take his drugs easily and listens to her... She is a sweetie...
So we went for another ride. We went back up to 5north and were lucky to see Mary and Ade... his 2 favorite night nurses on the 5th floor. We finally got back to the 4th floor and Chris was able to get to sleep much easier....
Ade came up to visit later but chris was asleep...
Even though the diarrhea had eased up during the day, he had a rough night :( I slept there and he was up often. Luckily, he was able to sleep for a few hours before the diarreaha acted up...
Again, at 8am Ade came to visit, but Chris was getting cleaned up
We even saw Vanessa and Dustin, 5north techs Saturday night and Chris was happy to see them
Now it was Sunday morning. It was Christine Rabbath's birthday. I told Chris the day before and Sunday morning, that I had plans with Christine, our moms, and Dana, to do lunch. And, Christine was going to help me organize all Chris's bills, paperwork, etc...
So, Sunday morning, Chris finally recovered a bit from his rough night. Strair came in to see us. He asked who from psychiatry had been in to see him already. Chris said no one. Strair said someone would be coming Monday. He agreed Chris needs to feel better mentally...
He said that the graft vs host is only in the GI tract. So thats their concern. (I was thinking, atleast its not in multiple places at this point)
He said that if it wasnt better by Monday, they would add the new drug...
He was excited to hear Chris was getting out in the hallls (he saw us up on the 5th floor yesterday) He said "see you out in the halls later then"
Oh...
Dana gave Chris a shirt. I brought it to him Saturday. It says "Colorado.. Hows your Aspen?"
Get it? Hows your ass been? funny?
Chris loved the shirt
So I showed it to Dr Strair on Sunday morning. He got a kick out of it too
He said it would be great for him to wear once he is out of the hospital
We showed the nurses the night before. they got a kick out of it too
So, Sunday Strair was done with him and Chris wanted to go for a ride before I left. I had to leave by 1030am to get home and showered. Then be back in the evening
So, Chris calls for help. While we were waiting, we decided to try it alone.. you know.. the long wait.... I only had an hour or so. Chris put his arms around me and he stood up and I helped him into the wheelchair. Rose came in and she disconnected him -- we went a ride... back to childrens hospital.. back to 5north,... back to 4th... around the hall in circles...
Then i brought him back to his room... I told the nurses he was ready to get out of the wheelchair...
Chris looks sad. I asked what was wrong. He said he was not ready to go back to his room
my heart was BREAKING.... I wanted to cry... A few days ago he was kicking me out.. now he was loving the rides so much.... so Paula came in to help with wheelchair... but I mentioned to her that he was sad and she offered to take him for a ride.. i thought he was going to leap for joy.. he was like "lets go" so that made me feel better as I was leaving
This is exactly what I fear. I leave every weekend to do my things at home.. and he is usually like ok, whatever... but when he is like this, i feel so bad....
its not like the nurses have time to just be wheeling him around...
It is motivating him to keep up with physical therapy.. when we walk around, he says "walking next" or when we pass by the doors to outside he says "they will be my doors soon" Poor guy.. cant even imagine what he feels like.... but i am happy i can take him downstairs...
Anyways, I feel terrible that he doesnt want me to leave. It would have been a great time to have a visitor who coulda wheeled him around. A few weeks ago, visitors would watch him sleep or get very little conversation time... now he can be more interactive...
I had a great lunch with the Rabbath women and babies. Then Christine was a tremendous help with the paperwork. Ben & Sean are so cute. Ben loved his presents (we finally did Christmas presents) and then I went back to the hospital
I called rose on my way -- he was unhooked when I got back
So, we did a 2 hour ride again Sunday night.
I brought him Dunkin Donuts tea (he cant have coffee right now) and we had a date with tea as we rode around... the nurses were excited to see him in the halls... Carroll hadnt seen him in a couple days.. and Jen..
Oh, the night before, Sophie gave him chocolate, orange jelly, Polish candy.. shhh... didnt seem to do any damage.. but its clearly not a clear fluid... he was loving it...
So anyways, last night, Sunday night, after our long walk and stuff, he was tired... so we got him in bed and Nina was his nurse again... we had a good night... he fell asleep.. I slept over...
He only needed to go 2 times overnight...
This morning, we woke up and Karen is his nurse.
She wanted him to get up into the chair so early... intentions are good. but i know he wasnt ready... he wanted to get in the wheelchair and ride but not til the doctors did rounds so he could be done with that.. but she talked him into getting up into wheelchair.. then we waited and Chris was getting frustrated cus he wanted to be disconnected and go... Karen didnt realize that... Dr Strair had today off (i guess for holiday) so Dr Gahribo was seeing him.. but Strair was in the halls all day.. weird.. that man never gets a break... God Bless him
So, Gharibo sees him and is happy to see him in a wheelchair.. she says they will monitor bowel movements one more day before deciding.. also the psychiatrist is not coming (holiday...) bullshit... chris really wants to see him...
so tuesday supposedly.. i have been hearing "word" of this for a week... i think tomorrow it will really happen though
So Karen unhooks him and we are off... I am feeling very tense... he really needs to get out of the room.. he enjoys it.. its good for him mentally.. and i run into an obstacle after a breeze.. after an ostacle...annoying.. i think i come off as snotty but i dont care.... i dont know what to do
So, we get back from our walk. We saw Sharon. Chris initially was going to go into the recliner but was wiped from the walk.. so he wanted bed... Karen and Jen come in to help move him... and were talking about him going to chair... he isnt saying anything.. so I had to ask him if he wanted to say anything... he was JUST arguing with me and insisting he was too tired to sit up any more.. so I feel like the bad guy or the bitch for making him talk.. but i could tell he was uncomfortable... If i felt he was being lazy or silly i would keep my mouth shut
So, he rests briefly and agrees to eat some lunch
I go to warm up his tea and broth... and the toast he is now allowed to have... and they tell me physical therapy is here for him... its noon.. he JUST laid down after being up and about.. i am fuming internally... She comes in the room as I am giving chris his lunch and nurse says maybe do therapy first.. i want to scream... he needs to eat... first time all day... and he needs to get a break.. and what happened to PT being around 1:30 everyday? how can he plan? He is supposed to do his own getting around when they arent there... ya know?
So, PT notices lunch and she says she will be back in 15 minutes...
whew... So I told Chris he needs to speak up.. I feel like I look like the blocker or the bitch for opening my mouth and he told me he would and stuff... he also told me to go rattle some chains...lol.. he was annoyed about the inconsistancies
So... I saw the outcomes manager nurse Elena and spoke with her.. and PT...
Chris did physical therapy and I watched... She asked me to follow him with the wheelchair as they held him up with chris holding the walker... I was confused.. there was NO room behind him for the wheelchair.. and why??? arent they supposed to make sure he doesnt fall? ugh
So, i am looking at the foot rests on the wheelchair and i am thinking.. if he starts falling.. the wheelchair isnt going to catch him.. his butt will never make it to the seat... but i shut up
He takes a few steps slowly.. i am proud.. but it sucks how hard it is for him
Therapist told me he was able to walk a bunch more steps than that last week but its ok, meds and stuff cause weakness to fluctuate during the progress
So... he gets weak and is falling... i had to fight to get chair behind him.. "told u so"
Anyways... before falling into chair,, he was getting dizzy... she told him his body is not used to being in that position... so she asked if he could do leg exercises and he did... the dizziness slowly went away
She didnt stay too long.. asked him to sit in wheelchair for a while.. mentioned sitting there for an hour and having lunch in the chair.. ummm he just ate duh...
anyways.. i sat hext to him until he was ready for bed...
He finally dozed off and the rehab doctor came.. DO WE HAVE TO WAKE HIM UP? are you that important? i mean, he isnt going to rehab that soon...
so he is alarmed at being woken up...
Then Occupational Therapy came and he was just beat...
He had more diarrhea... so i guess we will see how the night goes and they will make a decision about new drug tomorrow
ugh... I feel so bad for him
Chris started to freak out a little bit and i calmed him down...
Isabel is back tonight.. love her
He is sleeping now..
I am gonna get going.. I have been here for 27 hours... time for home.. time for dinner and Rex and shower....
I pray her has a good night... maybe we will get a miracle and his diarrhea will stop tonight and tomorrow will be better.. new president new health? I hope...
Tonight he said "come here and make me not freak out" so i did.. gave him the pep talk... i begged him to sit up whenever he can and take deep breaths.. reminded him how high risk he is for stuff and pray he continues to be motivated... ugh... i told him to occupy himself more during day so that he sleeps easier at night..
but i just want the Graft Vs Host to settle down
He said something funny to me earlier...
He was saying how perfect i am.. something about having me in his life now and whatever.. anyways.. i wish i could quote it.. but he said something about perfect cheesiness... and said it was like something perfect and then adding cheese and melting it and it being so yummy and good..lol.. he said it was a food metaphor.. very cute.. but funny...
Oh, and Olivia is a child prodigy.. she plays the piano like a champ... girl is going to juliard one day... jeanie sent me a video of her playing piano yesterday and chris and i were both super impressed
Well, tomorrow is inauguration. i hope i can see it somewhere at work... not sure if i will get out to see chris at lunch.. so i am gonna try to see him in the morning before work...
I will pray extra hard tonight... there are a lot of people who need it... Jeanie's friends & everyone...
love you all
jenn
Friday, 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
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