Today was pretty average, in the world of hospital/leukemia-ville
Chris started his chemo... they did his spinal tap today... that went well.. he slept a lot while i was at work
Lets see.. they gave him a calendar of chemo and non-chemo days which is new... they never layed it out like that before.. now we know exactly when he will get what
We saw Dr Strair this morning, bright and early... He checked in and will be going to a conference in DC this weekend... He will be talking to colleagues about Chris.. thats a good thing, right? A new crew comes in for November.. that means new residents and fellow and Doc in charge ... Dr Harrison I think.. Strair says he has a good sense of humor.. so that will be nice
Oh, side note... I walked around the parking deck this morning at the hospital.. for like 10 minutes... looking for my car... turns out i originally went to the right level and area but it was hiding behind a big huge SUV... i was so mad... what a way to start a morning...
Ok, so I get to the hospital after work tonight and Chris is sporting his new Hawaiian shirt... he looks well rested and happy...
Thats new new thing... he is gonna try to lighten the mood around here with Hawaiian shirts ... thats Chris! now i have to keep my eye out for them since they are out of season... lol I also brought halloween candy here... he wants to have it out for the nurses..
Aunt Ro and Uncle Les's balloons are still staying up... so its festive in here.. Can you believe its Halloween tomorrow? Ahh... so Chris decides to tell me all casually an hour or more after I got here today that the priest showed up... (FYI Chris was baptized but his mom was not Catholic and his stepdad and siblings are all Catholic... basically Chris never got all his sacraments... but he now considers himself Catholic but not "officially")-- anyways.. the priest came and turns out his grandma Phyllis on his step-dad's side wrote the priest a letter about Chris... the Robert wood hospital priest somehow knows his grandma.. Grandma has always wanted Chris fully in the church,,, she sends her love and prayers weekly these days (via US Mail) Well Chris told the priest he wanted to be fully Catholic and was interested in the process.. and the priest did a confession and then gave him Eucharist and confirmed him... all done.. just like that... big news to tell me all casually... well thats about it.. i think... tomorrow i have to be in trenton by 830am for a college job fair at the college of new jersey... Feel free to call me or text me.. or call chris or text him.. if he isnt napping he is always up for calls and company... I think we are seeing Jeanie and Gina this weekend... so far thats the tentative lineup.. plus my brother is always around every other day or so... love you all xoxox keep the prayers coming
Thursday, October 30, 2008
Wednesday, October 29, 2008
Wednesday Oct 29th Updates- More Chemo
Ok... well...
Dr Strair came to see us yesterday (Tuesday) around 6pm
There is now leukemia in his bone marrow.. it had not been there before ...
He is saying its about in 30% of his bone marrow... calls it a "fair" amount...
We definitely did not want to have this be the case, because if there was none in the marrow, we could be moving into transplant now...
But the good news, all things considered, is that Dr Strair has a plan... I guess the 30% is low enough that they can treat it... They are starting him on a round of chemo. The donor is on hold... he is ready for Chris when we are ready.... whoever this wonderful guy is...
Dr Strair's hope/goal is that this chemo reduces the leukemia in his marrow to 10% or less. If that happens (they will re-do the bone marrow biopsy in about 2 weeks) they will go ahead with the transplant. They will literally call the donor (the database people coordinate that since we dont "know" who the donor is) and get him scheduled. As soon as Chris's counts come up after this chemo, they will move him into transplant...
So, Dr Strair has come through with a plan... this is why he is the MAN...
Let me go back a bit...While we we waiting bone marrow biopsy results yesterday, Chris and I were both quite on edge, emotional, unsettled.. we prayed a lot... Sharon the chaplain came and prayed with us.. (oops I think I told you all this yesterday)
Anyways, my point in telling you this is because when Strair left the room yesterday evening, I felt God's presence.... I have never felt this before... and although I have always believed in God, in miracles, always had faith, etc... I had never ever seen or felt anything this real.... very weird but very calming...
I think God is telling us He hears us and He is with us.... He isnt letting us down... Just giving us, giving Chris another obstacle... I normally would ask WHY WHY WHY... he has been through so much already but Chris says "dont ask why" he says "ask what next?" Chris is amazing ... so strong ... so I go with it when I can...
So... Matt came last night... so did Christine Rapach (see recent blogs on who these people are if you do not know) and my brother.. My brother brought my new cell phone with him...Fed Ex had delivered it (Chris ordered me a new cell phone) its awesome the LG Voyager Titanium
Electronics always make Chris happy... Seeing Matt made Chris very happy
Christine brought Chris pizza.. and Starbucks.. and she brought me dinner too... she always brightens up the place and Chris loves being her shrink (sorry Christine)
OK. so today I went to work... I had a job fair so it was not an office day...
Chris called me and told me they are moving him from 5 North to 4 North (the Bone Marrow Transplant Unit) His platelets are low... and they will transfuse him... he is quite emotional because its new news and we are still trying to deal with the fact that he has more chemo coming...
Also he loves 5 North nurses... but we will get to know the bone marrow nurses and love them too I hope... They transfuse him with platelets and i text him from the job fair and he calls me... i am so busy at the job fair that i cannot answer.. I try texting and he is so out of it from the drugs and groggy meds that he cannot find the right keys to text me... poor Chris...
My parents go visit him for a bit.. I go home and crash.. i needed a nap.. so me and Rex napped...
Chris is neutrapenic... He cannot have fresh flowers in the room, cannot have fresh veggies, fruit, cold cuts, etc... If you visit, be clean and wash hands... wear mask if you are sick... blah blah blah..
this is part of why they moved him to the 4th floor
He is in a sterile, HEPA filter environment...
Poor Chris's appetite is all funky... he doesnt know what he wants to eat...
My brother is gonna go see him and get there before me... Chris wants Starbucks and all he feels like eating is Houlihans Potato Soup and he asks me to get it... but I just cannot do it...
I do not want him getting food poisoning at this point... there is always risk of bacteria with take out and who knows how many waiters ladel that soup.. i feel terrible... he is sooo bummed cus thats all he wants
I go to the grocery store... i buy canned soup... I get to hospital with soup and starbucks
The soup isnt yummy :( The nurse finds him a turkey sandwich... he also eats some graham crackers and it does the trick... whewwwww
Chris was informed that this chemo can be as ugly as what he went through in June... but Chris is strong.. he is healthy other than this freakin leukemia... so we will be ok...
Chris is scared.... I am scared.. but I am confident that God is on our side... but we have to keep asking Him for strength and blessings and all that...
So, we still pray... I thank you all for your prayers... and I ask that you all still pray
For those of you who dont pray, please trust me here... God has shown me he is here and Chris needs as much prayers as anyone right now...
Here is the plan... get Chris to that "less than 10%" level so that we move to transplant...
Oh, yesterday, I got a beautiful vase of flowers from Christine, Mike, and Ben to bring me sunshine.. they definitely did.. they are pretty.. thanks guys
Lew is flying up Monday... for a week I think.. and Chris is soo excited.. this will be good to have some more support up here
Matt- if you are reading this, I hope to see you up here more often while Chris is in here... I cannot tell you how happy I know Chris is to see more than just my face around here... :)
Lastly, I got home today, and there was a Fed Ex package for Chris.. I brought it here with the mail and Chris opened it and then gave me the contents.. its a gorgeous ring... He wanted to make things official...
We have been attached at the hip, going through a lot together, functioning like a married couple... and we knew we were soulmates when we first met.. Some nurses assume we are married.. others think we are engaged, etc etc... We are way more than just boyfriend/girlfriend so Chris wanted to put something on my finger to end all the confusion..
Of course, he couldnt get down on one knee.. i think the doctors woulda been a little mad
And, we cant exactly have a party right now...BUT.... we are happy...
When all is better, there will be a party to celebrate everything, including this official engagement... and I know Chris has a plan on re-popping the question when he isnt in the hospital... but for now, this is all that matters...
ok.. well Chris is dosing.. i should get rest..
thank you everyone again for the love and prayers
remember, we welcome visitors... and calls and all that..
love jenn
Dr Strair came to see us yesterday (Tuesday) around 6pm
There is now leukemia in his bone marrow.. it had not been there before ...
He is saying its about in 30% of his bone marrow... calls it a "fair" amount...
We definitely did not want to have this be the case, because if there was none in the marrow, we could be moving into transplant now...
But the good news, all things considered, is that Dr Strair has a plan... I guess the 30% is low enough that they can treat it... They are starting him on a round of chemo. The donor is on hold... he is ready for Chris when we are ready.... whoever this wonderful guy is...
Dr Strair's hope/goal is that this chemo reduces the leukemia in his marrow to 10% or less. If that happens (they will re-do the bone marrow biopsy in about 2 weeks) they will go ahead with the transplant. They will literally call the donor (the database people coordinate that since we dont "know" who the donor is) and get him scheduled. As soon as Chris's counts come up after this chemo, they will move him into transplant...
So, Dr Strair has come through with a plan... this is why he is the MAN...
Let me go back a bit...While we we waiting bone marrow biopsy results yesterday, Chris and I were both quite on edge, emotional, unsettled.. we prayed a lot... Sharon the chaplain came and prayed with us.. (oops I think I told you all this yesterday)
Anyways, my point in telling you this is because when Strair left the room yesterday evening, I felt God's presence.... I have never felt this before... and although I have always believed in God, in miracles, always had faith, etc... I had never ever seen or felt anything this real.... very weird but very calming...
I think God is telling us He hears us and He is with us.... He isnt letting us down... Just giving us, giving Chris another obstacle... I normally would ask WHY WHY WHY... he has been through so much already but Chris says "dont ask why" he says "ask what next?" Chris is amazing ... so strong ... so I go with it when I can...
So... Matt came last night... so did Christine Rapach (see recent blogs on who these people are if you do not know) and my brother.. My brother brought my new cell phone with him...Fed Ex had delivered it (Chris ordered me a new cell phone) its awesome the LG Voyager Titanium
Electronics always make Chris happy... Seeing Matt made Chris very happy
Christine brought Chris pizza.. and Starbucks.. and she brought me dinner too... she always brightens up the place and Chris loves being her shrink (sorry Christine)
OK. so today I went to work... I had a job fair so it was not an office day...
Chris called me and told me they are moving him from 5 North to 4 North (the Bone Marrow Transplant Unit) His platelets are low... and they will transfuse him... he is quite emotional because its new news and we are still trying to deal with the fact that he has more chemo coming...
Also he loves 5 North nurses... but we will get to know the bone marrow nurses and love them too I hope... They transfuse him with platelets and i text him from the job fair and he calls me... i am so busy at the job fair that i cannot answer.. I try texting and he is so out of it from the drugs and groggy meds that he cannot find the right keys to text me... poor Chris...
My parents go visit him for a bit.. I go home and crash.. i needed a nap.. so me and Rex napped...
Chris is neutrapenic... He cannot have fresh flowers in the room, cannot have fresh veggies, fruit, cold cuts, etc... If you visit, be clean and wash hands... wear mask if you are sick... blah blah blah..
this is part of why they moved him to the 4th floor
He is in a sterile, HEPA filter environment...
Poor Chris's appetite is all funky... he doesnt know what he wants to eat...
My brother is gonna go see him and get there before me... Chris wants Starbucks and all he feels like eating is Houlihans Potato Soup and he asks me to get it... but I just cannot do it...
I do not want him getting food poisoning at this point... there is always risk of bacteria with take out and who knows how many waiters ladel that soup.. i feel terrible... he is sooo bummed cus thats all he wants
I go to the grocery store... i buy canned soup... I get to hospital with soup and starbucks
The soup isnt yummy :( The nurse finds him a turkey sandwich... he also eats some graham crackers and it does the trick... whewwwww
Chris was informed that this chemo can be as ugly as what he went through in June... but Chris is strong.. he is healthy other than this freakin leukemia... so we will be ok...
Chris is scared.... I am scared.. but I am confident that God is on our side... but we have to keep asking Him for strength and blessings and all that...
So, we still pray... I thank you all for your prayers... and I ask that you all still pray
For those of you who dont pray, please trust me here... God has shown me he is here and Chris needs as much prayers as anyone right now...
Here is the plan... get Chris to that "less than 10%" level so that we move to transplant...
Oh, yesterday, I got a beautiful vase of flowers from Christine, Mike, and Ben to bring me sunshine.. they definitely did.. they are pretty.. thanks guys
Lew is flying up Monday... for a week I think.. and Chris is soo excited.. this will be good to have some more support up here
Matt- if you are reading this, I hope to see you up here more often while Chris is in here... I cannot tell you how happy I know Chris is to see more than just my face around here... :)
Lastly, I got home today, and there was a Fed Ex package for Chris.. I brought it here with the mail and Chris opened it and then gave me the contents.. its a gorgeous ring... He wanted to make things official...
We have been attached at the hip, going through a lot together, functioning like a married couple... and we knew we were soulmates when we first met.. Some nurses assume we are married.. others think we are engaged, etc etc... We are way more than just boyfriend/girlfriend so Chris wanted to put something on my finger to end all the confusion..
Of course, he couldnt get down on one knee.. i think the doctors woulda been a little mad
And, we cant exactly have a party right now...BUT.... we are happy...
When all is better, there will be a party to celebrate everything, including this official engagement... and I know Chris has a plan on re-popping the question when he isnt in the hospital... but for now, this is all that matters...
ok.. well Chris is dosing.. i should get rest..
thank you everyone again for the love and prayers
remember, we welcome visitors... and calls and all that..
love jenn
Tuesday, October 28, 2008
Updates (Oct 27 & 28) so far
Well... quick update...
Chris had lung and heart tests for pre transplant stuff
(Pulmonary Function and mugascan) Heart is great...
Bone marrow biopsy was yesterday
Those results dictate whether we move forward with bone marrow biopsy asap OR if we can do something in between or what... probably the most stressful days of this whole process
Around mid-day Dr came in to check in and said they still didnt have results on the bone marrow biopsy but that they should be end of afternoon (which is now)
Dr Strair is supposedly coming by after clinicals (which we are anxiously awaiting) its 5pm
So, I could be updating this in an hour...
and we having been praying harder and harder... this is going to tell us if we can proceed with transplant...
Chris had an emotional day.. and our chaplin Sharon who we love love love and have known since June had a long session with us today and prayed with us
Filled with anxiety and still praying...
love you all
Oh, Matt (Chris' brother) is on his way down in about an hour which will be great.. havent seen him since August... And Christine Rapach is stopping by to keep us company too and bring Chris coffee...
thanks to all of you who call and write...
I will update as soon as we get info on next steps .... ughhhhhh
Chris had lung and heart tests for pre transplant stuff
(Pulmonary Function and mugascan) Heart is great...
Bone marrow biopsy was yesterday
Those results dictate whether we move forward with bone marrow biopsy asap OR if we can do something in between or what... probably the most stressful days of this whole process
Around mid-day Dr came in to check in and said they still didnt have results on the bone marrow biopsy but that they should be end of afternoon (which is now)
Dr Strair is supposedly coming by after clinicals (which we are anxiously awaiting) its 5pm
So, I could be updating this in an hour...
and we having been praying harder and harder... this is going to tell us if we can proceed with transplant...
Chris had an emotional day.. and our chaplin Sharon who we love love love and have known since June had a long session with us today and prayed with us
Filled with anxiety and still praying...
love you all
Oh, Matt (Chris' brother) is on his way down in about an hour which will be great.. havent seen him since August... And Christine Rapach is stopping by to keep us company too and bring Chris coffee...
thanks to all of you who call and write...
I will update as soon as we get info on next steps .... ughhhhhh
Sunday, October 26, 2008
People in Our Life... Some Details.. photos
OK... so I posted some new photos on the main page...
I know people in Chris's world dont know people in my world and people in my world dont know people in Chris's world.. and some know both
I posted some pics of people with captions so you can put a name with a face and understand who I am referring to
I know its hard to know who I am talking about when I am throwing out names.. but I am trying my best
My brother Chris, lives at home with me, mom, dad, and Chris
Jeanie, Christine Rabbath, Christine Rapach- best friends of mine -- like sisters
Jeanie, lives 5 minutes away, married to Brian with 4 yr old Olivia... been attached at the hip since we were 17
Here are more pics of Jeanie with Brian, and of Olivia
Christine Rabbath, lives 25 minutes away, married to Mike with 8 month old Ben, her family is my family... went to school together kindergarten thru high school
Christine Rapach, lives 10 minutes away, single... reuninted when we planned high school reunion last year... always there for me
Lauren, my 20 year old cousin... her dad is my godfather.. she is like my lil sister
My mom, Loretta, works at a child care center
My dad Vito, works for Budweiser in Newark NJ, standing here in Chris's storage unit when it was still empty
He was my saving grace from june til september end when he was on disability and able to drive chris to appointments
Brother Lew, Air Force , stationed in Florida, has awesome gf Jen
Brother Matt (2nd oldest Waxmonsky boy... only Peg separates Chris and Matt in age) lives in North Jersey
Then there is Grandma Peters, Aunt Cathy, Aunt Ro, Grandma Phyllis, Ronnie, Gary, Jimmy, Jeremy, my friends at work Ann, Roxy, Tash, Paula (who brought us special things from Fatima), Gwen, Jess, Amy, Jeremy W, Cass, Lisa, Cousins Bethann, Leeann, Gina, Jaime, Patti, Shannon, Christine, Meredith, Mike R, Carol, Rebecca, Ann Marie, Mrs R, Mrs C, Kristin, Dana, Adriana, Kathy B, Eileen, mom's coworkers, Melinda P, Jen B, Jen L, Michelle, cousin Jen, etc etc who I will write more about... people who continue to offer prayers, suggest help, tell us they offer prayers at their church, etc etc.. more descriptions and lineage and photos to come
I know people in Chris's world dont know people in my world and people in my world dont know people in Chris's world.. and some know both
I posted some pics of people with captions so you can put a name with a face and understand who I am referring to
I know its hard to know who I am talking about when I am throwing out names.. but I am trying my best
My brother Chris, lives at home with me, mom, dad, and Chris
Jeanie, Christine Rabbath, Christine Rapach- best friends of mine -- like sisters
Jeanie, lives 5 minutes away, married to Brian with 4 yr old Olivia... been attached at the hip since we were 17
Here are more pics of Jeanie with Brian, and of Olivia
Christine Rabbath, lives 25 minutes away, married to Mike with 8 month old Ben, her family is my family... went to school together kindergarten thru high school
Christine Rapach, lives 10 minutes away, single... reuninted when we planned high school reunion last year... always there for me
Lauren, my 20 year old cousin... her dad is my godfather.. she is like my lil sister
My mom, Loretta, works at a child care center
My dad Vito, works for Budweiser in Newark NJ, standing here in Chris's storage unit when it was still empty
He was my saving grace from june til september end when he was on disability and able to drive chris to appointments
Brother Lew, Air Force , stationed in Florida, has awesome gf Jen
Brother Matt (2nd oldest Waxmonsky boy... only Peg separates Chris and Matt in age) lives in North Jersey
Then there is Grandma Peters, Aunt Cathy, Aunt Ro, Grandma Phyllis, Ronnie, Gary, Jimmy, Jeremy, my friends at work Ann, Roxy, Tash, Paula (who brought us special things from Fatima), Gwen, Jess, Amy, Jeremy W, Cass, Lisa, Cousins Bethann, Leeann, Gina, Jaime, Patti, Shannon, Christine, Meredith, Mike R, Carol, Rebecca, Ann Marie, Mrs R, Mrs C, Kristin, Dana, Adriana, Kathy B, Eileen, mom's coworkers, Melinda P, Jen B, Jen L, Michelle, cousin Jen, etc etc who I will write more about... people who continue to offer prayers, suggest help, tell us they offer prayers at their church, etc etc.. more descriptions and lineage and photos to come
We had visitors today--- and more hospital "stuff"
OK... so Chris is getting lots of Delaudid ( major pain meds through IV) and steroids.. they are trying to work out the right doses and see if his pain gets better....
They did a mugascan yesterday which tests his heart to make sure he is good to go through the transplant... Today, they did a catscan of the head to make sure they can do the spinal tap tomorrow... They always want to check the spine because thats where his original leukemia presented itself.. and because the leg pain could always be indication of spinal cord compression
They did not think his strength, symptoms, etc seem to be spinal compression which is I think why they arent rushing to do an MRI.... Also, they did an MRI 2 weeks ago which only showed 1 lil nodule... and no spinal compression.. but it seems if his pain isnt under control in the next day, they will be scheduling an MRI... with anastesia of course
also, as long as catscan from today of his head was ok, they should be doing spinal tomorrow...
pulmonary (lung)test would be tomorrow too.. thats another pre- bone marrow transplant test...
Aunt Ro and Uncle Les came today!! I got to meet them... Love them love them love them
They brought Halloween balloons and scarecrow plant and snacks and magazines... it stinks they are all the way in Maryland... but it was so great to see them... it made chris so happy, i know...
They are not only great family... but they are some of the smartest people i know... and Aunt Ro is in the infectious diseases industry so she has been very helpful with checking into chris's diagnosis and treatments.. its so reassuring and helpful (forgive me Aunt Ro, if I messed up describing what you do)
Lew and Matt will be up this week.. so thats great...
we do not know how long he will be in the hospital this week.. depends on getting his pain under control and what they determine is really causing the pain... the pain in hips and chest (sternum atra) is an indication stuff is going on on his bone marrow)...
Bone marrow biopsy was supposed to be outpatient Wednesday.. if he is still here, they will do it here
Remember the Doc (fellow) who couldnt handle the spinal and told us her brain doesnt work?? yea, well i requested that she does not do the chemo push during the spinal since she makes Chris uncomfortable... the nurse even told the doc in charge.... and when i talked to the doc, he tried to tell me she wouldnt be alone (the neuroradiologist is there) but Chris doesnt want her there.. so i re-iterated the issue... Hopefully my request will have worked and Dr Naylor will do the spinal .... or someone else... just not the doctor we dont feel comfy with
ok... well i am going to sign off of here... have a good week everyone! we will keep you posted again tomorrow
xoxoxox
They did a mugascan yesterday which tests his heart to make sure he is good to go through the transplant... Today, they did a catscan of the head to make sure they can do the spinal tap tomorrow... They always want to check the spine because thats where his original leukemia presented itself.. and because the leg pain could always be indication of spinal cord compression
They did not think his strength, symptoms, etc seem to be spinal compression which is I think why they arent rushing to do an MRI.... Also, they did an MRI 2 weeks ago which only showed 1 lil nodule... and no spinal compression.. but it seems if his pain isnt under control in the next day, they will be scheduling an MRI... with anastesia of course
also, as long as catscan from today of his head was ok, they should be doing spinal tomorrow...
pulmonary (lung)test would be tomorrow too.. thats another pre- bone marrow transplant test...
Aunt Ro and Uncle Les came today!! I got to meet them... Love them love them love them
They brought Halloween balloons and scarecrow plant and snacks and magazines... it stinks they are all the way in Maryland... but it was so great to see them... it made chris so happy, i know...
They are not only great family... but they are some of the smartest people i know... and Aunt Ro is in the infectious diseases industry so she has been very helpful with checking into chris's diagnosis and treatments.. its so reassuring and helpful (forgive me Aunt Ro, if I messed up describing what you do)
Lew and Matt will be up this week.. so thats great...
we do not know how long he will be in the hospital this week.. depends on getting his pain under control and what they determine is really causing the pain... the pain in hips and chest (sternum atra) is an indication stuff is going on on his bone marrow)...
Bone marrow biopsy was supposed to be outpatient Wednesday.. if he is still here, they will do it here
Remember the Doc (fellow) who couldnt handle the spinal and told us her brain doesnt work?? yea, well i requested that she does not do the chemo push during the spinal since she makes Chris uncomfortable... the nurse even told the doc in charge.... and when i talked to the doc, he tried to tell me she wouldnt be alone (the neuroradiologist is there) but Chris doesnt want her there.. so i re-iterated the issue... Hopefully my request will have worked and Dr Naylor will do the spinal .... or someone else... just not the doctor we dont feel comfy with
ok... well i am going to sign off of here... have a good week everyone! we will keep you posted again tomorrow
xoxoxox
Saturday, October 25, 2008
Update- Back in the Hospital Today
Ok... so I thought we were having a weekend home to relax... but no...
Last night (friday night) Chris wanted to get out of the house... knowing things could be happening fast (with complications and with transplant hopefully) he wants to be out and about when possible...
So, CVS wasnt going to have his oral chemo til after 6pm... so we picked it up, grabbed food at the Sherban Diner and than Starbucks...
Basically since Thursday night, he has the new pain patch to help with pain and lessen need for popping oxycodone... so he's got that going on.... now 24 hours later, we get the chemo pill and he takes the pill at 11:30 with night meds...
during dinner earlier, he was quite sleepy.. possibly overdrugged, still adjusting from patch with the oxy...
well, 3 hours later its 2:30am on Saturday, Chris wakes me feeling weird, trouble walking again, pain... Chris calls Dr Strair at 230am and we are told to go to the ER
My mom comes with us... They hook him up with delaudid and more drugs... they dont see signs of more spine compression ... but they are concerned.. so they admit him and increase the steroids to see if that helps.... just in case there is something going on in spine
Chris is more content with being here.... he knows he has to let them get the pain control figured out and do everything possible to get him in a place where the transplant is not postponed and happens asap
Hopefully the change in steroid doses down then up and then more up along with pain patch just messed him up...
they said steroids can cause the leg weakness he is having.. so we will see
More hospital time :( we were gonna get to the shore this weekend... oh well :(
what else? he was supposed to have a follow up at the doc Monday... was gonna have pre-transplant heart and lung function tests tuesday.. and a bone marrow biopsy wednesday..
i was stressed cus i am trying to be at work as normal as possible until tranplant time.. it gives me added anxiety... so i had rides lined up... dad is taking a vacation day wednesday...
we dont know how long chris will be here.. but they got the heart test done today.. so at least i dont have to stress about transport for monday and tuesday it seems...
Aunt Ro called today.. She is visiting tomorrow all the way from maryland... she talked to Dr Strair on the phone... she understands the clinical side....
Lew is flying up from Florida which i know chris is excited about seeing him.. and Matt will be driving down soon.. it will be good to see family... good for him ;)
Well, on my way back here today (cus i went home to nap and shower from 2:30pm til 7pm), it started pouring, of course... it always does when I have to drive to the hospital...
I stopped at starbucks for us... and I talked to God the entire way here... it helps to get crying out of the way in the car... plus my xanex from the morning was wearing off (nice how i am telling you all about my mental state) I told God somethings again, just to make sure he isnt forgetting...
Christine is here at the hospital keeping us company... they were having a heart to heart when I got here.... So, we are here... hanging...
love you all.. goodnight
Last night (friday night) Chris wanted to get out of the house... knowing things could be happening fast (with complications and with transplant hopefully) he wants to be out and about when possible...
So, CVS wasnt going to have his oral chemo til after 6pm... so we picked it up, grabbed food at the Sherban Diner and than Starbucks...
Basically since Thursday night, he has the new pain patch to help with pain and lessen need for popping oxycodone... so he's got that going on.... now 24 hours later, we get the chemo pill and he takes the pill at 11:30 with night meds...
during dinner earlier, he was quite sleepy.. possibly overdrugged, still adjusting from patch with the oxy...
well, 3 hours later its 2:30am on Saturday, Chris wakes me feeling weird, trouble walking again, pain... Chris calls Dr Strair at 230am and we are told to go to the ER
My mom comes with us... They hook him up with delaudid and more drugs... they dont see signs of more spine compression ... but they are concerned.. so they admit him and increase the steroids to see if that helps.... just in case there is something going on in spine
Chris is more content with being here.... he knows he has to let them get the pain control figured out and do everything possible to get him in a place where the transplant is not postponed and happens asap
Hopefully the change in steroid doses down then up and then more up along with pain patch just messed him up...
they said steroids can cause the leg weakness he is having.. so we will see
More hospital time :( we were gonna get to the shore this weekend... oh well :(
what else? he was supposed to have a follow up at the doc Monday... was gonna have pre-transplant heart and lung function tests tuesday.. and a bone marrow biopsy wednesday..
i was stressed cus i am trying to be at work as normal as possible until tranplant time.. it gives me added anxiety... so i had rides lined up... dad is taking a vacation day wednesday...
we dont know how long chris will be here.. but they got the heart test done today.. so at least i dont have to stress about transport for monday and tuesday it seems...
Aunt Ro called today.. She is visiting tomorrow all the way from maryland... she talked to Dr Strair on the phone... she understands the clinical side....
Lew is flying up from Florida which i know chris is excited about seeing him.. and Matt will be driving down soon.. it will be good to see family... good for him ;)
Well, on my way back here today (cus i went home to nap and shower from 2:30pm til 7pm), it started pouring, of course... it always does when I have to drive to the hospital...
I stopped at starbucks for us... and I talked to God the entire way here... it helps to get crying out of the way in the car... plus my xanex from the morning was wearing off (nice how i am telling you all about my mental state) I told God somethings again, just to make sure he isnt forgetting...
Christine is here at the hospital keeping us company... they were having a heart to heart when I got here.... So, we are here... hanging...
love you all.. goodnight
Friday, October 24, 2008
Friday- Weekend is here
Nothing too new to report... we are hanging in there
Today is a better day. Chris is mentally re-grouping and we are on our way out to the pharmacy to pick up the new oral chemo ... we are counting on this stuff to help prepare him for the best transplant possible...
Grabbing a bite... then some R&R that we both really need.. this week wiped us
Just want to thank everyone again, from the bottom of our hearts for all your love, thoughts, prayers, calls, concern... We cannot express our appreciation is words...
Hope everyone has a nice weekend... We arent sure what we are doing this weekend... Chris has some ideas "to get out of the house" but if you are around, reach out...
Love you all.... Jenn & Chris... xoxoxoxox
Today is a better day. Chris is mentally re-grouping and we are on our way out to the pharmacy to pick up the new oral chemo ... we are counting on this stuff to help prepare him for the best transplant possible...
Grabbing a bite... then some R&R that we both really need.. this week wiped us
Just want to thank everyone again, from the bottom of our hearts for all your love, thoughts, prayers, calls, concern... We cannot express our appreciation is words...
Hope everyone has a nice weekend... We arent sure what we are doing this weekend... Chris has some ideas "to get out of the house" but if you are around, reach out...
Love you all.... Jenn & Chris... xoxoxoxox
Thursday, October 23, 2008
Our Appointment Today- A Set Back
Well... we went into today's morning appointment thinking we were getting some treatment info... some dates... etc...
They took 20 viles of blood... and will be doing type matching for the transplant..
When Jackie and Dr Strair talked to us, we heard some things we were not expecting...
There is one new bump since last week. The doctor is concerned about the aggressiveness of the leukemia.... and made it very clear that if Chris were an older guy, transplant might not even be in the discussion right now.. that was hard to hear...
Basically, we knew this was a very serious disease... his version is rare.. so there are much less statistics on this type
Going into transplant with this level of activity back in his body makes it a lot harder to fight...
They are working rigorously on getting a date from the donor..and we are praying he is available ASAP... We found out the donor is male and 23!!! That is good news. the younger the better and same sex is always better as well
Additionally, if this donor isnt ready soon enough, we have 2 other exact matches who have been contacted... they are both male and 30-35 yrs old.. some people cannot even find donors... so we are lucky...
They gave Chris more pain meds today including a patch so that he isnt so uncomfortable over the next couple weeks... he is also starting an oral chemo tomorrow... we want to try to stop or maintain the new leukemia activity now.... so...
Chris will have standard pre-bone marrow heart and lung tests tuesday and a bone marrow biopsy on wednesday...
and as soon as we hear from the donor as far as a date, chris will hopefully be ready to go into transplant... we are now praying we can pause or slow down the growths until transplant.. its crucial for the bone marrow to be able to happen
Its going to be a harder fight.. there will be more leukemia for the new immune system (Donor's immune system) to find and kill...
I am not going to lie... we got very emotional... Chris and I were not prepared to hear the doctor and Jackie talk about how much more serious it is now nor how worried they are either.... I was holding in emotions but Chris broke first... then Jackie cried... she is so awesome... with all the shit going on, having an aggressive awesome team but that is human and has emotions makes it more comfortable... it sucks... now we just wait to see how the chemo oral pills work and how soon they can get him into transplant..
I believe in God more than ever and I know unfair things happen to people often... but I am trusting and hoping that after all the shit we have been through, in life, and especially now, that 3 donors is God's blessing.... and if you are meant to beat cancer, you are going to beat it no matter how bad things are,, A 23 year old's marrow should be pretty damn strong and working!
Anyways, its been a rough day for us... again, if you pray, just pray for Chris... I believe God is listening... Thanks everyone for your emails and comments and everything...
Love ya!
They took 20 viles of blood... and will be doing type matching for the transplant..
When Jackie and Dr Strair talked to us, we heard some things we were not expecting...
There is one new bump since last week. The doctor is concerned about the aggressiveness of the leukemia.... and made it very clear that if Chris were an older guy, transplant might not even be in the discussion right now.. that was hard to hear...
Basically, we knew this was a very serious disease... his version is rare.. so there are much less statistics on this type
Going into transplant with this level of activity back in his body makes it a lot harder to fight...
They are working rigorously on getting a date from the donor..and we are praying he is available ASAP... We found out the donor is male and 23!!! That is good news. the younger the better and same sex is always better as well
Additionally, if this donor isnt ready soon enough, we have 2 other exact matches who have been contacted... they are both male and 30-35 yrs old.. some people cannot even find donors... so we are lucky...
They gave Chris more pain meds today including a patch so that he isnt so uncomfortable over the next couple weeks... he is also starting an oral chemo tomorrow... we want to try to stop or maintain the new leukemia activity now.... so...
Chris will have standard pre-bone marrow heart and lung tests tuesday and a bone marrow biopsy on wednesday...
and as soon as we hear from the donor as far as a date, chris will hopefully be ready to go into transplant... we are now praying we can pause or slow down the growths until transplant.. its crucial for the bone marrow to be able to happen
Its going to be a harder fight.. there will be more leukemia for the new immune system (Donor's immune system) to find and kill...
I am not going to lie... we got very emotional... Chris and I were not prepared to hear the doctor and Jackie talk about how much more serious it is now nor how worried they are either.... I was holding in emotions but Chris broke first... then Jackie cried... she is so awesome... with all the shit going on, having an aggressive awesome team but that is human and has emotions makes it more comfortable... it sucks... now we just wait to see how the chemo oral pills work and how soon they can get him into transplant..
I believe in God more than ever and I know unfair things happen to people often... but I am trusting and hoping that after all the shit we have been through, in life, and especially now, that 3 donors is God's blessing.... and if you are meant to beat cancer, you are going to beat it no matter how bad things are,, A 23 year old's marrow should be pretty damn strong and working!
Anyways, its been a rough day for us... again, if you pray, just pray for Chris... I believe God is listening... Thanks everyone for your emails and comments and everything...
Love ya!
Tuesday, October 21, 2008
October 21st
So, today, I come home from work. Jackie, the super nurse/bone marrow coordinator of Dr Strair's.. she calls and tells Chris that Strair should have preliminaries on the biopsy by end of day.. holy shit...
Well, a few hours later... she calls back
It is leukemia. It has comes back
This is exactly why he needed the bone marrow transplant from Day 1 when they first diagnosed him.... because this leukemia can come back THIS fast... and with a vengence...
So... Dr Strair is ready to move him right into bone marrow transplant.
Jackie is working on scheduling a date. We will see the doc on Thursday for final information...
Its disappointing that the leukemia is back before transplant... but the transplant goal is to get rid of the leukemia... and leading up to transplant, he is getting major strong chemo to get rid of a lot before the new bone marrow gets put in...
The good news, is we are getting ready to take care of this nasty disease... its overwhelming.. we had a very overwhelming summer, a more overwhelming few weeks with the leg issues and lumps, and a very very ridiculously overwhelming day. Today was the reality we were ready for, but you never really are totally ready. Shit.. no one thinks they will get hit with this at 28, out of no where.. I am so proud of Chris... he is so strong.. even though he thinks he isnt sometimes...
We are trying as best we can to mentally prepare for this 4-6 week stay in the hospital for transplant... We arent sure how soon Chris will be admitted. Thursday we will most likely know.. it could be as soon as Friday.. it all depends on how fast the donor can be ready to donate his goods... 10 days before transplant day (Day "0") is when they start the chemo for Chris... 6-8 days of chemo and then 2 days of rest.. and then on DAY ZERO is when they transfuse the new bone marrow into Chris....
Let me tell you, this leukemia coming back so damn fast after 3 rounds of chemo and a clean petscan (or almost clean petscan) in July is a reality check... this is exactly why a transplant is necessary to fix him.. and this is also a time to realize how lucky and blessed we are that in the midst of this terrible disease.. this unfair time in our lives.. how great it is that Jackie and the National Database was able to find a donor.. and so soon...
This, is definitely helping us keep the faith.. faith that God is looking out for Chris and me and all of us.. that He has a plan... and we just pray that he is on our side in all of this...
So... on that note... my blog is officially current.. I really wish I thought of starting this blog back in June.. but nonetheless its caught up, it exists and I will update frequently... I will write more in a couple days when we have more information from Roger (Dr. Strair)
Please keep us in your prayers... and feel free to contact us, comment, email, etc..
love you all, Jenn and Chris
October 13-October 20 - Petscan & Spinal Tap Happen
Ok... So Monday October 13th comes. They schedule Chris to go down to down to petscan and to radiology for the spinal tap.
The reason they do spinal tap down there (when they are not successful at bed-side) is because they can see exactly where they need to poke to get to the spinal fluid. A neuroradiologist does the spinal tap... and then a fellow (From Dr Strair's team) does the push of chemo into the spine.
Well ,listen to this...
Remember the fellow that told us on October 10th that her brain was not efficient? Yea, well she was the one down in radiology who was to push the chemo... She was not there at first... She walks in, and immediately his blood pressure and heart rate went up. When it was time for her to do her part, the neuroradiologist actually tells her to assist him and he takes over. Chris said she looked like a fish out of water.... So spinal is all over... the fellow leaves.. and the neuroradiologist basically agrees with Chris that he has no confidence in her.
Chris is sent back to his room. I come back to the hospital. We spend the night hanging out...
I go to work the next day (Tuesday Oct 14) The team of doctors comes around.. still no petscan results... ugh...
Finally Chris is frustrated waiting for results. they usually rush to get his results
He calls Dr Strair and immediately he is like "why havent the petscans been read yet?"
40 minutes later he calls Chris and tells him there is new activity on the petscan. He tells Chris he can go home and come see him in 2 days...
October 16th, we go see Dr Strair. They tell us about the new activity. Dr Strair needs to find out if these 5 new lumps/growths on Chris's thighs, belly, and elbow are leukemia or not. We have an x-ray after the appointment to make sure that there are no growths on bones that might cause a fracture. And, we have the biopsy of a bump on the right thigh scheduled for Monday the 20th
The 20th comes.. Dr Partridge- who we love- removes the growth... Chris feels good.. they used a local.. so he can go home almost immediately... we go home and await the results... it shouldnt take more than a few days...
The reason they do spinal tap down there (when they are not successful at bed-side) is because they can see exactly where they need to poke to get to the spinal fluid. A neuroradiologist does the spinal tap... and then a fellow (From Dr Strair's team) does the push of chemo into the spine.
Well ,listen to this...
Remember the fellow that told us on October 10th that her brain was not efficient? Yea, well she was the one down in radiology who was to push the chemo... She was not there at first... She walks in, and immediately his blood pressure and heart rate went up. When it was time for her to do her part, the neuroradiologist actually tells her to assist him and he takes over. Chris said she looked like a fish out of water.... So spinal is all over... the fellow leaves.. and the neuroradiologist basically agrees with Chris that he has no confidence in her.
Chris is sent back to his room. I come back to the hospital. We spend the night hanging out...
I go to work the next day (Tuesday Oct 14) The team of doctors comes around.. still no petscan results... ugh...
Finally Chris is frustrated waiting for results. they usually rush to get his results
He calls Dr Strair and immediately he is like "why havent the petscans been read yet?"
40 minutes later he calls Chris and tells him there is new activity on the petscan. He tells Chris he can go home and come see him in 2 days...
October 16th, we go see Dr Strair. They tell us about the new activity. Dr Strair needs to find out if these 5 new lumps/growths on Chris's thighs, belly, and elbow are leukemia or not. We have an x-ray after the appointment to make sure that there are no growths on bones that might cause a fracture. And, we have the biopsy of a bump on the right thigh scheduled for Monday the 20th
The 20th comes.. Dr Partridge- who we love- removes the growth... Chris feels good.. they used a local.. so he can go home almost immediately... we go home and await the results... it shouldnt take more than a few days...
Monday, October 20, 2008
OCTOBER 3 to OCTOBER 12 (including my meltdown on Oct 10)
Ok... so now its October 3rd... the day after the finger tumor was removed.
Chris is feeling ok... but the finger is painful...
He has a few uneventful days... but his joints feel achey/painful here and there...
By October 8th, the joint pain worsens. We have an appointment for Friday October 10th to sit down with the doctor about the timeline leading up to transplant. Its coming soon
Basically, in the national bone marrow database, of millions of donors, they found a few close matches... there is an exact match. I read something like 70% of patients have trouble finding a donor.. so this is excellent news.
If there were whole siblings, there would be a 1 in 4 chance of having an exact match
Otherwise, you rely on un-related donors.
We do not know who the donor is or where they are from. After 1 year, if the donor chooses, we can find out how to contact them
Donor has to get clearance from their doctor, and Chris has to get a few standard tests as well...
Then the transplant is scheduled. Chris gets admitted. gets chemo and then gets new bone marrow...
Well, the day before this meeting, (OCtober 9) Chris's joint pain is so bad that he cannot walk down the hall to the bathroom on his own..
So we get to the doc on October 10th.. they see him in a wheelchair and see his leg weakness...
they do bloodwork and send him right across the street to the ER...
What a day!! Dr Strair called over with all the info on Chris.. suggest MRIs etc... they suspect something is going on again in his spine causing the leg weakness
We sit all freakin day in the ER waiting for a room (cus they will admit him) and for MRI
See, remember, Chris needs anastesia with his MRI. major claustrophobic
So, we see a ton of doctors.. the ER doc, the head of ER, the nurses, some fellows and residents, the head oncologist on duty from Dr Strair's group... everyone asks the same questions
Chris is feeling ok cus they have him on steroids and pain meds.. after a few hours in the ER, he can stand a lot easier...
So listen to this bullshit... the fellow on duty, she is a doctor right? well there is major language barrier. major..
She is asking him questions, he cannot understand her.. I interpret.
He says his answer.. she doesn't understand.. I interpret.
She asks for some history on him (look at the chart, PLEASE)
She comes back at one point and actually says "I am sorry, my brain is not so efficient") Yea, that's what she said. Poor Chris. I was frustrated...
So, they finally take him to MRI. Its gonna be a few hours.
I go home to get clothes, freshen up, shower, and then I stop to get him food (he requested)
I call the ER desk, as I was told was the best place to call to find out where he was after MRI
I am told he is all done, recovered, in the ER, awaiting transport to his room in 5North
So, i get the food, I rush back. I have 2 laptops on my shoulder, a bag of clothes, my purse, the food... and i get to the ER and they tell me he is probably in a certain room.. he isn't there.. finally someone else says, oh no he is in recovery still
It was the worst day... the person on the phone was explicit that he was ready to go to his room.. and after talking to seriously 5 people in ER, they tell me they will call recovery.... Did I mention that i have a million bags on my shoulder?
I normally do not complain, but I have been so stressed, that a few screw-up nurses, and i am ready to either cry or scream... poor Chris is gonna be starving and now his food will be cold.. they direct me to the recovery room and give me an extension to call
So, I travel across the hospital and cannot find the damn place.
I call. She tells me i cannot see him yet.. go back to the waiting room
are you kidding? he was groggy from anaesthesia...
I told her what i was told (about him being all recovered)
So she calls me when i can sneak in and see him.. she tries to give me directions on the phone to the recovery room. I am listening, and she is telling me stuff like "walk away from the parking deck, down the hall, it curves, pass PACU (whats PACU?), pass blah blah, make a left, go through double doors, then left and double doors"
I seriously thought i was going to have a nervous breakdown. It wasn't her fault.. it was the damn day i had.. but do you know how big this hospital is???? I am tired.. i want to see Chris but i seriously want to cry... i am so mad that they misinformed me in the ER.. so mad i could have had an extra hour laying down at home... and the damn ER person couldn't tell me the right info...
I know this all sounds silly and petty... but these people.. the least they can do is give me correct information... don't they realize how many months both of us have been in and out of this place?
Oh and did I mention that during the day, they were trying to give him meds that he wasn't even on anymore... so much for giving updated drug info when you get to the ER... they pulled up old info anyways
So... I go through restricted areas and find the recovery room... i felt like i was on greys anatomy.. except there was no mcStreamy and it was uneventful.. his nurse was nice...
she tells me i can see him for a few.. and then that they will be bringing him to his room soon.. and asks if i want to meet them up there (as she is about to wheel him there).. huh? where am i going that i will meet them there if they are going now??? so she tells me i can come with them if i want... weird day i tell you
so, his eyes are all scratchy from the anaesthesia... and he isn't hungry... and i need xanex... but i left it at home... and i have a 3 day weekend.. thank goodness
So, they keep him on steroids... he is walking so well now
All they see on the MRI is one small new nodule...
they schedule a pet scan and a spinal tap
The doctors on duty are ok.. except the fellow that has already on our bad side
They try to do spinal bedside on sunday the 12th... i watch... (cus i have a new interest in this whole nursing/medical thing) Dr Naylor and Dr Dodzie (spelling?)
they numb him.. and they poke and they cannot find fluid.. they try 4 times.. i felt bad for the doctors and for chris...
they finally give up and say they will do it in radiology the next day....
so i will continue tomorrow
Chris is feeling ok... but the finger is painful...
He has a few uneventful days... but his joints feel achey/painful here and there...
By October 8th, the joint pain worsens. We have an appointment for Friday October 10th to sit down with the doctor about the timeline leading up to transplant. Its coming soon
Basically, in the national bone marrow database, of millions of donors, they found a few close matches... there is an exact match. I read something like 70% of patients have trouble finding a donor.. so this is excellent news.
If there were whole siblings, there would be a 1 in 4 chance of having an exact match
Otherwise, you rely on un-related donors.
We do not know who the donor is or where they are from. After 1 year, if the donor chooses, we can find out how to contact them
Donor has to get clearance from their doctor, and Chris has to get a few standard tests as well...
Then the transplant is scheduled. Chris gets admitted. gets chemo and then gets new bone marrow...
Well, the day before this meeting, (OCtober 9) Chris's joint pain is so bad that he cannot walk down the hall to the bathroom on his own..
So we get to the doc on October 10th.. they see him in a wheelchair and see his leg weakness...
they do bloodwork and send him right across the street to the ER...
What a day!! Dr Strair called over with all the info on Chris.. suggest MRIs etc... they suspect something is going on again in his spine causing the leg weakness
We sit all freakin day in the ER waiting for a room (cus they will admit him) and for MRI
See, remember, Chris needs anastesia with his MRI. major claustrophobic
So, we see a ton of doctors.. the ER doc, the head of ER, the nurses, some fellows and residents, the head oncologist on duty from Dr Strair's group... everyone asks the same questions
Chris is feeling ok cus they have him on steroids and pain meds.. after a few hours in the ER, he can stand a lot easier...
So listen to this bullshit... the fellow on duty, she is a doctor right? well there is major language barrier. major..
She is asking him questions, he cannot understand her.. I interpret.
He says his answer.. she doesn't understand.. I interpret.
She asks for some history on him (look at the chart, PLEASE)
She comes back at one point and actually says "I am sorry, my brain is not so efficient") Yea, that's what she said. Poor Chris. I was frustrated...
So, they finally take him to MRI. Its gonna be a few hours.
I go home to get clothes, freshen up, shower, and then I stop to get him food (he requested)
I call the ER desk, as I was told was the best place to call to find out where he was after MRI
I am told he is all done, recovered, in the ER, awaiting transport to his room in 5North
So, i get the food, I rush back. I have 2 laptops on my shoulder, a bag of clothes, my purse, the food... and i get to the ER and they tell me he is probably in a certain room.. he isn't there.. finally someone else says, oh no he is in recovery still
It was the worst day... the person on the phone was explicit that he was ready to go to his room.. and after talking to seriously 5 people in ER, they tell me they will call recovery.... Did I mention that i have a million bags on my shoulder?
I normally do not complain, but I have been so stressed, that a few screw-up nurses, and i am ready to either cry or scream... poor Chris is gonna be starving and now his food will be cold.. they direct me to the recovery room and give me an extension to call
So, I travel across the hospital and cannot find the damn place.
I call. She tells me i cannot see him yet.. go back to the waiting room
are you kidding? he was groggy from anaesthesia...
I told her what i was told (about him being all recovered)
So she calls me when i can sneak in and see him.. she tries to give me directions on the phone to the recovery room. I am listening, and she is telling me stuff like "walk away from the parking deck, down the hall, it curves, pass PACU (whats PACU?), pass blah blah, make a left, go through double doors, then left and double doors"
I seriously thought i was going to have a nervous breakdown. It wasn't her fault.. it was the damn day i had.. but do you know how big this hospital is???? I am tired.. i want to see Chris but i seriously want to cry... i am so mad that they misinformed me in the ER.. so mad i could have had an extra hour laying down at home... and the damn ER person couldn't tell me the right info...
I know this all sounds silly and petty... but these people.. the least they can do is give me correct information... don't they realize how many months both of us have been in and out of this place?
Oh and did I mention that during the day, they were trying to give him meds that he wasn't even on anymore... so much for giving updated drug info when you get to the ER... they pulled up old info anyways
So... I go through restricted areas and find the recovery room... i felt like i was on greys anatomy.. except there was no mcStreamy and it was uneventful.. his nurse was nice...
she tells me i can see him for a few.. and then that they will be bringing him to his room soon.. and asks if i want to meet them up there (as she is about to wheel him there).. huh? where am i going that i will meet them there if they are going now??? so she tells me i can come with them if i want... weird day i tell you
so, his eyes are all scratchy from the anaesthesia... and he isn't hungry... and i need xanex... but i left it at home... and i have a 3 day weekend.. thank goodness
So, they keep him on steroids... he is walking so well now
All they see on the MRI is one small new nodule...
they schedule a pet scan and a spinal tap
The doctors on duty are ok.. except the fellow that has already on our bad side
They try to do spinal bedside on sunday the 12th... i watch... (cus i have a new interest in this whole nursing/medical thing) Dr Naylor and Dr Dodzie (spelling?)
they numb him.. and they poke and they cannot find fluid.. they try 4 times.. i felt bad for the doctors and for chris...
they finally give up and say they will do it in radiology the next day....
so i will continue tomorrow
Saturday, October 18, 2008
Sept 10th to October 2 (Post 3rd Round of Chemo)
Ok... we've been through post-chemo 2 times now. We should know what we are in for.
After the whole blood clot situation of June, doctors decided to put Chris on Lovenox (blood thinner injections) when he is not low on platelets or having surgery)
Guess who volunteers to give him these injections? Me!! I do not think I mentioned that before... but i started that in early July when he first went home. I actually am ok with it.. and Chris prefers it to giving it to himself in the belly
Those are twice a day. However, when his platelets are low after chemo, they pause. And when he is having surgery they pause.
When he came home from Chemo 2, I was giving him neuprogin shots for 10 days. They help the white blood cells build. 3 shots a day-- not fun. So, now after Chemo 3, I am giving him neuprogin again.
September 10 and 11 he is feeling pretty decent. Sept 12th, we go in for bloodwork, counts are ok... platelets are low, so they give him a transfusion, and they make him sick. Throws up.. feels awful.. so they do not do that 2nd spinal tap I talked about in a previous post.
Sept 15th, he goes back in for standard bloodwork.. counts are pretty low (neutropenic) and they give him platelets again. After that, his platelets are still not high enough for a spinal tap. So they send him home. Sept 16th we have a doctors appointment,. We schedule bloodwork for every other day. My mom finds out there is a chicken pox outbreak at her work (daycare)-- so it freaks her out cus she doesnt think she ever had chicken pox.. although her bloodwork shows an immunity. Chris has never gotten them! Ugh.... We find out there is an exact match donor for Chris for the bone marrow transplant! And, we have to schedule for a bone marrow transplant class. It is required. Counts will be going up and he will have the finger surgery soon so we can get it out of the way before the transplant. Sept 18th and Sept 20th are more bloodwork and no transfusions are needed. Sept 24th, Chris's elbow is acting up with tendinitis again... doc prescribes meds. The next day, his elbow is worse. I take him to the doctor to get a cortizone shot which Dr Strair says he can do. Elbow gets better. On Friday Sept 26th, he wakes up with ankle pain shooting up his calf almost like a cramp and up to his hip. I am already at work , so my dad takes him to the doctor (they want to see him)
He gets morphine.. spends the whole late morning and afternoon there. They let him go home. This was my dad's last day of disability. I thank God my dad was around for all these months to help take chris to appointments. I get to the same-day suite and Chris looks so drained. We get to go home though. He is instructed to call if it gets worse. They think he might have a blood clot that was pressing on the nerve or muscle. He gets better a little more each day that weekend. Oh, and it was time that morning to go back on the Lovenox injection.. so we start that, and Doctor feels it would help if there was a blood clot. Sunday, I have lil Ben's Christening. Chris is just not up to par.. he needs to stay in bed... and my dad stays home with him. Dad is going back to work the next day after 6 months of disability and wasnt feeling great either. I go with my mom to the baptism and Chris rests...
October 1st, we have bone marrow transplant class. My mom comes... its a few nurses (including Jackie) and us. I needed my mom to come.. I need someone else in the hosuehold to hear first-hand how serious a lot of these things are. Everything from sanitizing the house, throwing out leftovers pretty quickly, cat scratch prevention, no plants in the house, etc...
and all the possible complications during and after the transplant... craziness...
I will tell you more about that later
October 2nd, Chris has surgery to remove the pseudo tumor on the finger and we are awaiting the transplant... The surgery goes well... Doctor has to remove a nerve that the tumor was wrapped around.. and he will have no feeling on one side of his finger, but its ok. He is ok with it.
After the whole blood clot situation of June, doctors decided to put Chris on Lovenox (blood thinner injections) when he is not low on platelets or having surgery)
Guess who volunteers to give him these injections? Me!! I do not think I mentioned that before... but i started that in early July when he first went home. I actually am ok with it.. and Chris prefers it to giving it to himself in the belly
Those are twice a day. However, when his platelets are low after chemo, they pause. And when he is having surgery they pause.
When he came home from Chemo 2, I was giving him neuprogin shots for 10 days. They help the white blood cells build. 3 shots a day-- not fun. So, now after Chemo 3, I am giving him neuprogin again.
September 10 and 11 he is feeling pretty decent. Sept 12th, we go in for bloodwork, counts are ok... platelets are low, so they give him a transfusion, and they make him sick. Throws up.. feels awful.. so they do not do that 2nd spinal tap I talked about in a previous post.
Sept 15th, he goes back in for standard bloodwork.. counts are pretty low (neutropenic) and they give him platelets again. After that, his platelets are still not high enough for a spinal tap. So they send him home. Sept 16th we have a doctors appointment,. We schedule bloodwork for every other day. My mom finds out there is a chicken pox outbreak at her work (daycare)-- so it freaks her out cus she doesnt think she ever had chicken pox.. although her bloodwork shows an immunity. Chris has never gotten them! Ugh.... We find out there is an exact match donor for Chris for the bone marrow transplant! And, we have to schedule for a bone marrow transplant class. It is required. Counts will be going up and he will have the finger surgery soon so we can get it out of the way before the transplant. Sept 18th and Sept 20th are more bloodwork and no transfusions are needed. Sept 24th, Chris's elbow is acting up with tendinitis again... doc prescribes meds. The next day, his elbow is worse. I take him to the doctor to get a cortizone shot which Dr Strair says he can do. Elbow gets better. On Friday Sept 26th, he wakes up with ankle pain shooting up his calf almost like a cramp and up to his hip. I am already at work , so my dad takes him to the doctor (they want to see him)
He gets morphine.. spends the whole late morning and afternoon there. They let him go home. This was my dad's last day of disability. I thank God my dad was around for all these months to help take chris to appointments. I get to the same-day suite and Chris looks so drained. We get to go home though. He is instructed to call if it gets worse. They think he might have a blood clot that was pressing on the nerve or muscle. He gets better a little more each day that weekend. Oh, and it was time that morning to go back on the Lovenox injection.. so we start that, and Doctor feels it would help if there was a blood clot. Sunday, I have lil Ben's Christening. Chris is just not up to par.. he needs to stay in bed... and my dad stays home with him. Dad is going back to work the next day after 6 months of disability and wasnt feeling great either. I go with my mom to the baptism and Chris rests...
October 1st, we have bone marrow transplant class. My mom comes... its a few nurses (including Jackie) and us. I needed my mom to come.. I need someone else in the hosuehold to hear first-hand how serious a lot of these things are. Everything from sanitizing the house, throwing out leftovers pretty quickly, cat scratch prevention, no plants in the house, etc...
and all the possible complications during and after the transplant... craziness...
I will tell you more about that later
October 2nd, Chris has surgery to remove the pseudo tumor on the finger and we are awaiting the transplant... The surgery goes well... Doctor has to remove a nerve that the tumor was wrapped around.. and he will have no feeling on one side of his finger, but its ok. He is ok with it.
Chemo Round 3 Sept 3rd-Sept 9th
Sept 3rd. They do bloodwork and get the central line put in his arm, but do not start chemo because they are concerned he might have a sinus infection, so they do a catscan. All looks fine, so they say they will start chemo. A fellow of Dr Strair's comes to see him... and we discover that there is a totally different plan for this round of chemo. Chris is pretty surprised because no one informed us prior that there would be 2 spinal taps involved. Thats a lot to take in when you are expecting bags of chemo going in with IV... and nothing else. So, its some more citarabine... I should really remember the spelling. And some methatrxate (which is green liquid)-- there is an initial bag and then a 24 hour bag they start. They have to interupt the 24-hour bag to take him down to MRI.
Remember back in early August (before Lew's visit) they had admitted him when his counts were low. They wanted to do MRIs back then... then they decided it could wait a couple weeks. Yea, well, on August 25th, we got a call from MRI asking where Chris was. Apparently they scheduled it for August 25th and never told him. We were still waiting for a call .. They ALWAYS call the day before about all procedures and surgeries and scans. I wanted to kill this woman.. could barely understand her and swore she called him twice and mailed something. All of a sudden on the 25th, she couldnt reach him when he didnt show up and find my number.. Likely story. Ugh...
Anyways, they had rescheduled the MRIs with anastesia for September 5th, and now he is in-patient getting chemo.
So... they interupt the 24-hour bag and take him down to MRI. I go home for a few hours to get some stuff and i get back by 10pm.. he was supposed to be done by 9:30. He didnt get upstairs til 11 :( they had to put him all the way under (intibate). Poor Chris had a sore throat for a few days. Anyways... chemo continues and the first spinal is done the next day Sat Sept 6. (this is actually his 2nd spinal, cus he had one in June)
This spinal is done bedside by a fellow and another doctor. They numb you, have you bent over the hospital tray. They poke and get spinal fluid. Then after they retrieve fluid to test, they put some chemo in. Doesnt sound pleasant.
Sept 7th is his last day of chemo. He cannot go home yet because they have to test blood for certain levels.. make sure the green methotrexate chemo is out of his system. Sept 9th he is discharged. He will have to come back in 5 days or so for a 2nd spinal which is pretty typical with this course of chemo. But it will be outpatient
Remember back in early August (before Lew's visit) they had admitted him when his counts were low. They wanted to do MRIs back then... then they decided it could wait a couple weeks. Yea, well, on August 25th, we got a call from MRI asking where Chris was. Apparently they scheduled it for August 25th and never told him. We were still waiting for a call .. They ALWAYS call the day before about all procedures and surgeries and scans. I wanted to kill this woman.. could barely understand her and swore she called him twice and mailed something. All of a sudden on the 25th, she couldnt reach him when he didnt show up and find my number.. Likely story. Ugh...
Anyways, they had rescheduled the MRIs with anastesia for September 5th, and now he is in-patient getting chemo.
So... they interupt the 24-hour bag and take him down to MRI. I go home for a few hours to get some stuff and i get back by 10pm.. he was supposed to be done by 9:30. He didnt get upstairs til 11 :( they had to put him all the way under (intibate). Poor Chris had a sore throat for a few days. Anyways... chemo continues and the first spinal is done the next day Sat Sept 6. (this is actually his 2nd spinal, cus he had one in June)
This spinal is done bedside by a fellow and another doctor. They numb you, have you bent over the hospital tray. They poke and get spinal fluid. Then after they retrieve fluid to test, they put some chemo in. Doesnt sound pleasant.
Sept 7th is his last day of chemo. He cannot go home yet because they have to test blood for certain levels.. make sure the green methotrexate chemo is out of his system. Sept 9th he is discharged. He will have to come back in 5 days or so for a 2nd spinal which is pretty typical with this course of chemo. But it will be outpatient
Recovering From Chemo Round 2... other complications
Ok... so Chris is getting better bloodwork-wise. We have a few weeks before Chemo Round 3... but we have to get that finger resolved,,, you know about the finger? or no? Chris had a little tiny bump on his left middle finger for years...
After the first round of chemo it started getting bigger. And then it got bigger and bigger.. literally 3 times the size of his finger. It looked painful and it was painful..
Dr Partridge saw him in the hospital and was ready to biopsy it as soon as his counts were up after Chemo Round 2. After counts start going back up, Chris has terrible tendinitis pain one day. - August 15th to be exact. We go to see Jackie (Dr Strair's right hand woman- Nurse- Bone Marrow Coordinator). They talk to him about admitting him... but it could take days to get MRI scheduled. He does not want to spend the weekend in the hospital just waiting for tests. He gets a quick x-ray. Nothing looks bad... he is better in a day or so. So, Chris has the biopsy done of his finger on August 20th. It comes back non-cancer-- its a pseudo tumor.
Now we have some time to chill at home before Round 3 of chemo starts. Dr Strair calls before Labor Day weekend but they were getting final pathology on the finger biopsy and waiting for rooms to be available.. so We get to stay home for Labor Day weekend.. we go back to the hospital September 3rd. I am attaching photos of his finger that will have to be fixed after Chemo Round 3
Tuesday, October 14, 2008
Chris's Brother Lew, Jen, Jeanie, Matt Visit...Aug 9th
Chris is feeling a lil blah still.. but rests up and is excited for the day of their visit... Chris has not seen his brother Lew in about 2 years ... and will be meeting his girlfriend Jen for the first time. Chris, Lew, and Matt havent been together in a very long time. And, I am excited to finally meet Lew and Jen. I had originally planned on having all week to plan for this visir/BBQ... but being in the hospital unexpectedly during the week (tues, wed, thurs) set me back... so ....
I run around getting last minute stuff... Burgers, dogs, making slow cooked pork, making salads: cole slaw, salads, blueberry cobbler, and other snacks are on board...
We have soooo much fun... I love Chris' brothers.. My parents love them too.. Jen is sooo sweet and we are so sad that they live in Florida... Matt is an hour away in north Jersey so we will see him more, I hope... my best friend Jeanie also came by to join in the fun and meet Chris' brothers... as well as my brother's friends Andrew, Rob, Chris L... and some others.. it was a fun day
I am attaching some pics... Chris and his brothers had fun posing for some brother photos... then there is Lew and I... and a pic of some internet viewing fun...
I run around getting last minute stuff... Burgers, dogs, making slow cooked pork, making salads: cole slaw, salads, blueberry cobbler, and other snacks are on board...
We have soooo much fun... I love Chris' brothers.. My parents love them too.. Jen is sooo sweet and we are so sad that they live in Florida... Matt is an hour away in north Jersey so we will see him more, I hope... my best friend Jeanie also came by to join in the fun and meet Chris' brothers... as well as my brother's friends Andrew, Rob, Chris L... and some others.. it was a fun day
I am attaching some pics... Chris and his brothers had fun posing for some brother photos... then there is Lew and I... and a pic of some internet viewing fun...
We are thankful Chris's timeline of chemo and hospitalizations allowed for a smooth home visit and day with brothers and Jen... we cannot wait to see them all again
Chemo Round 2 - July 22-27 & the weeks following
Time to go in for more chemo... this time the citerabine (spelling?) is stronger but its one day on and one day off... This time, we need eye drops because the chemo can cause MAJOR itching or burning.
Annoyance #1-- we get in there in the morning that day. Well, not me.. my dad brought him... and they did not get the central line put in until the afternoon... Central line is not a triple lumen in the neck this time... Its a central line in the arm. then, they still cannot start chemo because the doc never ordered bloodwork... and without bloodwork, pharmacy will not make chemo for him
So, we wasted a day in the hospital.. grrrr
They are able to start at like 5am. Anyways... On Day 5, we get discharged... woohooo! Now its back to bloodwork every few days and waiting til Chris is neutrapenic...
Lets see... He is feeling pretty good one day and he takes me up to Clifton and shows me around where he grew up. Then we go to Hot Grill.... I had it once and didnt realize it cus it was when i was in the north jersey office for work.
Their chili dogs are great.. yummmo...
Chris goes in for an appointment as his CBCs are dropping... and because he has had so many headaches and his counts are so low, they admit him. He is not happy. Whenever there are certain symptoms they rush to take action. His leukemia is rare and on the bones, so any spinal related issues, or pains, cause concern. In fact, one time he went in to same day for bloodwork, and mentioned headaches... they did a catscan right there and made him wait for results before sending him home...
Anyways, they admit Chris because he was anemic. They transfuse him with platelets and then red blood. They want to do MRIs cus of his headaches and major fatigue..
He tries to tell them that he needs to be knocked out. he is very claustrophobic and when he had an MRI at JFK, they had to put him out for it. This time, they try making him do it with just Ativan and it doesnt go well. Chris freaks and they decide they will have to re-schedule with Anastesia...
Anyways, his CBCs are back up. he is feeling better. The MRI is no longer an emergency and they let him go home. Chris is a happier camper now because he (understandably) does not wan to he in the hospital to wait around for tests They schedule the MRI for a couple weeks out.
THis discharge is good timing because his brother Lew and his gf Jen are up for a week of vacation from Florida... We are having them over on Saturday August 9th (my mom's birthday) and he is discharged on August 7th after 2-3 days in the hospital....
Now, he gets to see Lew and I get to meet him and we meet Jen...
YAY!!
Annoyance #1-- we get in there in the morning that day. Well, not me.. my dad brought him... and they did not get the central line put in until the afternoon... Central line is not a triple lumen in the neck this time... Its a central line in the arm. then, they still cannot start chemo because the doc never ordered bloodwork... and without bloodwork, pharmacy will not make chemo for him
So, we wasted a day in the hospital.. grrrr
They are able to start at like 5am. Anyways... On Day 5, we get discharged... woohooo! Now its back to bloodwork every few days and waiting til Chris is neutrapenic...
Lets see... He is feeling pretty good one day and he takes me up to Clifton and shows me around where he grew up. Then we go to Hot Grill.... I had it once and didnt realize it cus it was when i was in the north jersey office for work.
Their chili dogs are great.. yummmo...
Chris goes in for an appointment as his CBCs are dropping... and because he has had so many headaches and his counts are so low, they admit him. He is not happy. Whenever there are certain symptoms they rush to take action. His leukemia is rare and on the bones, so any spinal related issues, or pains, cause concern. In fact, one time he went in to same day for bloodwork, and mentioned headaches... they did a catscan right there and made him wait for results before sending him home...
Anyways, they admit Chris because he was anemic. They transfuse him with platelets and then red blood. They want to do MRIs cus of his headaches and major fatigue..
He tries to tell them that he needs to be knocked out. he is very claustrophobic and when he had an MRI at JFK, they had to put him out for it. This time, they try making him do it with just Ativan and it doesnt go well. Chris freaks and they decide they will have to re-schedule with Anastesia...
Anyways, his CBCs are back up. he is feeling better. The MRI is no longer an emergency and they let him go home. Chris is a happier camper now because he (understandably) does not wan to he in the hospital to wait around for tests They schedule the MRI for a couple weeks out.
THis discharge is good timing because his brother Lew and his gf Jen are up for a week of vacation from Florida... We are having them over on Saturday August 9th (my mom's birthday) and he is discharged on August 7th after 2-3 days in the hospital....
Now, he gets to see Lew and I get to meet him and we meet Jen...
YAY!!
In between Chemo 1 and Chemo 2- July 4 to July 22
So... starting July 4th, Chris gets to be home for a few weeks before the next chemo. We have Lauren, Lorraine, Ray, Christine, Mike, Ben, and I forget who else come over for a 4th of July BBQ. It was crappy outside so we stayed inside. It was nice for Chris to finally be home.
Oh I forgot to mention, when I brought Chris home the night before... it was wonderful.. Homecoming... He saw his cat Rex for the first time in a month. It was one of the most beautiful things I have ever seen. I know this sounds silly... but me and my mom were all teary watching them re-unite... Rex was so happy to see Chris and I know Chris was sooo happy too... I miss Rex whenever I am not home.. I cannot imagine how it is for Chris to be without Rex for a month.
4th of July is nice.. we watch fireworks on tv...
We have bloodwork appointments, and doctor appointments. Bloodwork looks good. We meet with the urologist. Basically, they are recommending the removal of the other testicle - we are pretty prepared for this.. but its real now. Surgery is scheduled. Although Chris has gotten chemo, and will be getting more, the testicles are unfortunately a hiding place for cancers AND chemo does not reach the testicle as well as it reaches other parts of the body. The doctors feel it is best to just remove the 2nd testicle to play it safe. The intense chemo would probably leave him infertile anyways.. and we have already stored some sperm. We agree its best for Chris to go through with the surgery...
During this time home, my dad was a HUGE help. He was still home on disability from his hip replacement. Go figure. But, he was doing well and drove chris to a lot of appointments and tests. I dont know how i would have handled this without my dad's help. My boss is extremely understanding and flexible... I work from home when I have to on afternoons or mornings, but I try to not miss too much work and save time for when he has the transplant. My dad being off for all of this was God-sent. He went back to work at the end of September.
In July, Chris had a pet scan. .. July 11th to be exact... Chris has an appointment on July 15th and they reviewed the petscan....Things looked great. No leukemia activity... spine leisions were gone or much smaller. The only place there is any activity is the groin area,,, but we are removing the testicle anyways... Chemo seems to be working... July 18th the 2nd testicle is removed... He spends a few days recovering... He feels well enough to come with me to Jeanie's house for her birthday barbeque on July 20th.... although its a bbq, he is not well enough to be outside in the hot sun, but is still able to enjoy being out that day... Now Round 2 of Chemo is scheduled... Here we go...
Oh I forgot to mention, when I brought Chris home the night before... it was wonderful.. Homecoming... He saw his cat Rex for the first time in a month. It was one of the most beautiful things I have ever seen. I know this sounds silly... but me and my mom were all teary watching them re-unite... Rex was so happy to see Chris and I know Chris was sooo happy too... I miss Rex whenever I am not home.. I cannot imagine how it is for Chris to be without Rex for a month.
4th of July is nice.. we watch fireworks on tv...
We have bloodwork appointments, and doctor appointments. Bloodwork looks good. We meet with the urologist. Basically, they are recommending the removal of the other testicle - we are pretty prepared for this.. but its real now. Surgery is scheduled. Although Chris has gotten chemo, and will be getting more, the testicles are unfortunately a hiding place for cancers AND chemo does not reach the testicle as well as it reaches other parts of the body. The doctors feel it is best to just remove the 2nd testicle to play it safe. The intense chemo would probably leave him infertile anyways.. and we have already stored some sperm. We agree its best for Chris to go through with the surgery...
During this time home, my dad was a HUGE help. He was still home on disability from his hip replacement. Go figure. But, he was doing well and drove chris to a lot of appointments and tests. I dont know how i would have handled this without my dad's help. My boss is extremely understanding and flexible... I work from home when I have to on afternoons or mornings, but I try to not miss too much work and save time for when he has the transplant. My dad being off for all of this was God-sent. He went back to work at the end of September.
In July, Chris had a pet scan. .. July 11th to be exact... Chris has an appointment on July 15th and they reviewed the petscan....Things looked great. No leukemia activity... spine leisions were gone or much smaller. The only place there is any activity is the groin area,,, but we are removing the testicle anyways... Chemo seems to be working... July 18th the 2nd testicle is removed... He spends a few days recovering... He feels well enough to come with me to Jeanie's house for her birthday barbeque on July 20th.... although its a bbq, he is not well enough to be outside in the hot sun, but is still able to enjoy being out that day... Now Round 2 of Chemo is scheduled... Here we go...
Monday, October 13, 2008
Visitors, Family, New Friends...
So... let me take some time to tell you about my great friends, family, Chris's friends and family...and about our new Robert Wood Johnson University Hospital friends...
My parents have been extremely supportive.. I do not know what we would do without them... Without any hesitation, they offered for him to move in with us... Just as they thought I would be moving out with him... we gained a new housemate.. lol...
My brother (outside of my normal brother-sister issues with him) is awesome... between being there for me, coming to see Chris in the hospital every other day when he was in that first month, and helping me move everything out of Chris's apartment into storage and my house...
Chris's grandma and Aunt Cathy came to see Chris every Saturday when he was in that first month. It made Chris very happy to get to see them... Aunt Roseann is is awesome... She has a lot of experience and knowledge in the medical industry and has been in touch with Dr Strair. She checked into his leukemia with the people she knows, and its very reassuring to know she is so on top of things! When she was in NJ in June, she came to see Chris at the hospital... I unfortunately did not get to meet her. Lew is unfortunately all the way in Florida, but having him a phone call away is very good... Chris gets regular phone calls with his lil brother... Another brother, Matt, came to see Chris at the hospital as well... It was great to meet him..
My best girlfriends and my lil cousin Lauren -- I do not know what I would do without them,,, between Christine Rapach always being there for a visit after work at the hospital or dinner or drink... walking down to a Rutgers eatery... bringing Chris his Incredible Hulk toy and keeping us company, etc... Then, Christine Rabbath, even though she is busy with lil baby Ben, always calling to check in, coming to stop in at JFK ICU, bringing us yummy treats once Chris got home from the hospital... and Jeanie... there whenever we need her... came to visit multiple times..always offering help... Hearing from lil Liv always makes Chris smile... My cousin Lauren, also visiting, keeping me company at home and in hospital... coming through with a tape recorder for the first meeting with Dr Strair... I love you guys and I hope you all know how much you mean to me and Chris...
Our first nurse at Robert Wood was Laura.. she made the transition to the hospital a pleasure... Then there was Mary.. I mentioned her in another post. She cried and prayed with Chris... I will always remember her. Maria, so sweet. Debbie, the head nurse on Day Shift. She is like a mom for Chris... One of my personal favorites is Kachi.. She is the head night nurse. I absolutely love her. She has a few lil kids at home, one being a baby. She was there for Chris and me on a few nights that were not so good for Chris. She was there when Chris got very sick (the night he started crashing).. She was also there one night when he was back up on the 5th floor after recovering from the crash. Chris was on some drug that made him pretty silly. And, he wound up sleep-walking sorta... he freaked me out a lil cus it was the middle of the night, I woke up, and there is Chris walking with the IV tower to the bathroom.. but he looked like he was on a mission... he started telling me about Superman (or Batman... i cannot really remember now) But, he was very serious.. it was quite funny... and I think I touched on this in a previous post.. sorry
but back to Kachi.. I ran out to let her know and she helped get Chris settled... She is compassionate and great!! Everytime Chris is on the 5th floor, she stops by and makes our being there as best as possible...
There are so many great nurses on the 5th floor... Grace Mary, Sue, Beada, Bee (the same day chemo suite nurse), Glydis, Jolenta (the Polish Force-- she is very serious but so sweet once you get to know her), Nesrin, Mark (newer very attractive nurse that i would hook up with a single girl in a heartbeat), Ade (he is soooo sweet), a nurse that we loved who took care of him after his 2nd round of chemo (end of july), Emmanuael, then the 4th floor nurses, Nancy and Tracy are awesome too
Dr Strair is seriously amazing... extremely good at what he does, but awesome to talk to, answers my million questions and i really appreciate that... his team is pretty good... although we always miss Strair when someone else is doing rounds... Dr Sadov, is great. Alex Gattman, Dr Naylor-- love them too... I wont mention the others but you get the drift...
Chris's friend Johanna from back in the day made a bunch of trips down here to see Chris. And some old Clifton friends came down to visit. This is a shitty time for Chris and for all of us, but having great people around us makes it so much better... and I apologize if I forgot to mention anyone in this post.
My parents have been extremely supportive.. I do not know what we would do without them... Without any hesitation, they offered for him to move in with us... Just as they thought I would be moving out with him... we gained a new housemate.. lol...
My brother (outside of my normal brother-sister issues with him) is awesome... between being there for me, coming to see Chris in the hospital every other day when he was in that first month, and helping me move everything out of Chris's apartment into storage and my house...
Chris's grandma and Aunt Cathy came to see Chris every Saturday when he was in that first month. It made Chris very happy to get to see them... Aunt Roseann is is awesome... She has a lot of experience and knowledge in the medical industry and has been in touch with Dr Strair. She checked into his leukemia with the people she knows, and its very reassuring to know she is so on top of things! When she was in NJ in June, she came to see Chris at the hospital... I unfortunately did not get to meet her. Lew is unfortunately all the way in Florida, but having him a phone call away is very good... Chris gets regular phone calls with his lil brother... Another brother, Matt, came to see Chris at the hospital as well... It was great to meet him..
My best girlfriends and my lil cousin Lauren -- I do not know what I would do without them,,, between Christine Rapach always being there for a visit after work at the hospital or dinner or drink... walking down to a Rutgers eatery... bringing Chris his Incredible Hulk toy and keeping us company, etc... Then, Christine Rabbath, even though she is busy with lil baby Ben, always calling to check in, coming to stop in at JFK ICU, bringing us yummy treats once Chris got home from the hospital... and Jeanie... there whenever we need her... came to visit multiple times..always offering help... Hearing from lil Liv always makes Chris smile... My cousin Lauren, also visiting, keeping me company at home and in hospital... coming through with a tape recorder for the first meeting with Dr Strair... I love you guys and I hope you all know how much you mean to me and Chris...
Our first nurse at Robert Wood was Laura.. she made the transition to the hospital a pleasure... Then there was Mary.. I mentioned her in another post. She cried and prayed with Chris... I will always remember her. Maria, so sweet. Debbie, the head nurse on Day Shift. She is like a mom for Chris... One of my personal favorites is Kachi.. She is the head night nurse. I absolutely love her. She has a few lil kids at home, one being a baby. She was there for Chris and me on a few nights that were not so good for Chris. She was there when Chris got very sick (the night he started crashing).. She was also there one night when he was back up on the 5th floor after recovering from the crash. Chris was on some drug that made him pretty silly. And, he wound up sleep-walking sorta... he freaked me out a lil cus it was the middle of the night, I woke up, and there is Chris walking with the IV tower to the bathroom.. but he looked like he was on a mission... he started telling me about Superman (or Batman... i cannot really remember now) But, he was very serious.. it was quite funny... and I think I touched on this in a previous post.. sorry
but back to Kachi.. I ran out to let her know and she helped get Chris settled... She is compassionate and great!! Everytime Chris is on the 5th floor, she stops by and makes our being there as best as possible...
There are so many great nurses on the 5th floor... Grace Mary, Sue, Beada, Bee (the same day chemo suite nurse), Glydis, Jolenta (the Polish Force-- she is very serious but so sweet once you get to know her), Nesrin, Mark (newer very attractive nurse that i would hook up with a single girl in a heartbeat), Ade (he is soooo sweet), a nurse that we loved who took care of him after his 2nd round of chemo (end of july), Emmanuael, then the 4th floor nurses, Nancy and Tracy are awesome too
Dr Strair is seriously amazing... extremely good at what he does, but awesome to talk to, answers my million questions and i really appreciate that... his team is pretty good... although we always miss Strair when someone else is doing rounds... Dr Sadov, is great. Alex Gattman, Dr Naylor-- love them too... I wont mention the others but you get the drift...
Chris's friend Johanna from back in the day made a bunch of trips down here to see Chris. And some old Clifton friends came down to visit. This is a shitty time for Chris and for all of us, but having great people around us makes it so much better... and I apologize if I forgot to mention anyone in this post.
First Round of Chemo- June 2008
Ok... so from June 14th to June 21st, Chris has his induction chemo. Its pretty intense stuff that goes through the tubes into the cathetar and there is also a chemo that they push (injection) a couple times. They tell him he will most likely lose hair. Might have nausia, diareaha, all that good stuff... Chris is in pretty good spirits. He is getting around much better than when he first got diagnosed. The steroids worked. (and the radiation shrunk the leisions also)... Chris decides he is going to shave his head so that he doesnt lose it in clumps. My brother Chris comes over one night and helps him shave. Chris requests White Castle - he wants to enjoy it while he is able to still eat what he wants. So I bring a Crave Case for the shaving occassion. I clearly remember this night because I took some Xanex when I got there... and I was initially disinterested in the burgers but once the Xanex kicked in, I was craving them badly ;) Chris and Chris got quite a kick out of my sudden happy mood. One night, a day or 2 after chemo starts, Chris gets terrible pain in his arm. They think they hit a nerve when they put that catheter in his neck. he is up one night with awful pain.. the nurse Mary was actually crying and praying with him... some of these nurses are very special.. I am thankful... somehow i slept thru that.. i usually wake up whenever nurses come in... but not that time...
Chemo week is over and now we are to wait for his CBCs (blood counts) to drop... A few days after chemo ends, his counts are dropping but not too low yet. Once they get to a certain low point, he is considered neutrapenic. That means his white blood count is so low that he is very suseptible to getting sick, shouldnt eat cold cuts or raw veggies or fruit, etc etc... Visitors should not come or wear masks if they feel sick... The diareaha starts and one night around June 24th, he is in the bathroom in the middle of the night, a lot. By the morning, I notice his blood pressure is a little low. I go to work... By 11am, his nurse Debbie calls me and suggests I come back to the hospital. He has spiked to 102 degree fever, blood pressure had dropped to a very very low point and they were transferring him to the bone marrow transplant unit one floor below. Its sorta like an ICU for leukemia patients. Closer watch... they arent sure whether he has an infection or what is going on. I am scared as hell when I get to the hospital. He is shaking so bad from the fever and chills. I am feeding him ice chips... the shakes stop. We move downstairs. Chris is not excited about moving to another floor. But, we find such great nurses down there too.. Thank goodness because he will be spending more time down there when he finally has a transplant
2 nurses (Liz and I forget the other one's name) are both ready to have babies... And we love love love Tracy and Nancy... Chris is very comfortable with them... He also tells me all about Nick, the CCT... I meet him later that day and he is very funny
They schedule him for a catscan of his bowels. Before they can treat the diareaha, they have to see what is going on. Chris recovers really nicely from this crash. Doctors are impressed. They tell him not to eat until the bowels can rest. Poor Chris doesnt eat for 3 days. They go back and forth on whether or not he can have clear fluids. They dont want to give him the IV nutrients cus there is sugar in that and can make him sicker.
So, the results of catscan come back. Good news is that the bowels were just annoyed from his diareaha and all. But, the happen to find a blood clot in his lung!! Come on... whats next? He has no symptoms. They schedule a doppler test to check for more clots. That doesnt happen til the next day. Some of these departments take forever for scheduling. Chris is feeling much better. They find clots in his right leg near knee. They decide to put a Greenfield basket/filter in to his vein or artery near his groin. Basically, when any clots from legs try to move up to his upper body, it catches the clot and breaks it up so it doesnt move to heart or lungs. The doctors went back and forth about whether thay could do this because you cannot have an MRI for 30 days after having this put in. The decide they can do a petscan if they need to scan during those 30 days. Now, they cannot schedule the filter for that day, so overnight, I pray that the clots in his leg do not un-lodge and move up to his lungs or heart. They tell him not to move. Go to the bathroom bedside if he has to... Of course, I am paranoid.. I cannot sleep. Because I worry... but thats what I do.. The interesting thing is that his platelets were so low due to chemo that the doctors were shocked he had clots. But, Chris is an interesting case;)
Basket is put in. Chris is neutrapenic... but after a few days of that, his counts start to go up. They give him neuprogin injection for 10 days after chemo, that helps with the white blood cells. A few times they transfuse him with platelets and once with red blood. After 6 days in the bone marrow unit, Chris is ready to go back to the 5th floor. we miss that floor. There are so many restrictions on the 4th floor because of the bone marrow transplants, obviously. There are HEPA filters and doors must be closed.. etc etc... It is not as social down here, but its ok when its necessary
The doctor gets him back to the 5th floor. There is one night when Chris has ativan or something and in the middle of the night, he has to get up to pee... And he is half awake, talking about Batman and being on some mission.. it was quite funny
And by July 3rd Chris is discharged just in time for the holiday. We are scheduled for bloodwork followups every 3 days, but its ok.. he is going home! Pictures in this post is from the head shaving with white castle!!!
The Diagnosis, Plan for Treatment June 13 2008 +
So, upon arriving at Robert Wood, and Meeting Dr Strair, we realize there is a team of doctors (pathologists, oncologists, hematologists, etc) figuring out exactly what Chris has. They do a bone marrow biopsy, they start looking at all Chris's scans from JFK (there are A LOT).
They decide to start radiation focused just on the spots where there the lesions on his back were. There are 3 short treatments over 3 days. Pretty cool that they tatoo (pencil mark size) the spots so they know where to aim the radiation. Steroids have already helped him walk.
Dr Strair lets us know they are still working on the exact leukemia diagnosis... Eventually we find out... Dr Strair decides to have a meeting. Chris invites all his closest friends/fam to come hear what the doctor is going to explain about his diagnosis. Grandma Rita and Aunt Cathy come. I meet them. They are great. My parents and brother also come. He tape recorded Dr Strair... We learn that its called acute extra medular leukemia. (or exo medulary... I always forget which is the right way to say it) Its on the outside of his bones. Most leukemia is found intially from blood tests.. Its usually in the blood... Bone marrow biopsies usually confirm... Chris's is very different... His bone marrow has no leukemia... His bloodwork looks fine...
According to the doctors, your body is like a factory... The bone marrow makes your blood cells (platelets, white blood cells, and red blood cells). Platelets help you clot. Red blood cells carry oxygen through blood, and white blood cells are your immune system... what helps fight infection.. sometimes something goes wrong in the factory, but usually, in a normal human being, the factory fixes the mistake... With Chris, however, something went wrong, it doubled, no one fixed it, and boom we have a problem
Chris was at Ground Zero for a few days doing Rescue and Recovery. (He was a volunteer firefighter in North Jersey) Supposedly, his factory malfunction has nothing to do with environment or things he has been exposed to. but, I dont quite buy that.. there was some pretty harsh shit in the air at Ground Zero.. but thats not gonna change the now, so thats all i am going to say about that
They are going to start chemo on this day. Saturday June 14th. Radiation had already started. Chemo is going to be running over 7 days. They actually took him down to special surgeries department and put in a central line in before the meeting that Saturday June 14th. Basically they insert a triple lumen catheter into his main artery in his neck. Its an I-V into his artery. There are 3 tubes (forgive my terrible medical vocabulary) hanging out of this neck. It freaked me out at first. At this point, back in early June, I was the girl who doesnt mind blood but cannot even look at my own veins. wait til we get to September and October blogs... see photo attached with Chris' triple lumen
Oh, by the way, the bone marrow biopsy... yea... they basically drill, err.. put a huge needle into his hip bone to draw some marrow. Poor Chris...
This is all very overwhelming. In this meeting, Strair basically tells us that this leukemia is very aggressive and the best option is to have a bone marrow transplant. He will have chemo monthly until they see how its working and also search for a donor. There is a huge database. Millions of donors. They look for similar body makeup. There is a good chance that Chris's body is like Ford pick-up with easy to find parts (making the ability to find a match or donor easier) but he could be a rare model and have a hard time to find a matching donor. Unfortunately Chris's 6 siblings are all half siblings. Basically, there is no better chance of them matching than the few of the millions that they will hopefully find a match from. If he had whole siblings, there would have been a 25% chance of a perfect match. So, the search starts. The chemo starts. They tell us about this induction chemo.. Its intense. Tons of possible side effects. We are in for the ride. Basically, if we just did chemo, there is a huge chance the leukemia will come back.. and it comes back worse. Bone marrow transplant is scary and not a guarantee, but if its successful, its basically a cure, so to speak. The transplant procedure is not IT. There is a year of recovery and possible and likely complications.
THey also do a spinal tap to check the spinal cord fluid about 2 days into chemo. THey put chemo in the spinal canal just to make sure we kill anything that might be in there. That fluid comes back leukemia-free too. See picture in this post of Chris laying flat after the spinal.
Chris has his age, overall health, good spirits, and God on his side. He is strong. I am strong and we are gonna get through this...
Shit Hits The Fan June 6 2008
So, on Friday June 6th, Chris wakes up and can barely feel his legs. Last night, he thought he might have pinched a nerve, or whatever. However, when he woke up, it was worse. I did not realize just how bad it was. He drove himself to the ER instead of going to work. I got up, got ready for work and went straight to the ER to see him before I went to work.
While I was at work, he had MRIs done at JFK Hospital. They thought they would see a slipped disc or something. What they found, no one would have ever imagined. They found leisions on various parts of his spinal cord. They examined him further. There was a growth on his testicles. Ultrasounds were done. When I was at work, Chris told me they found the testicular growth by basic examining. But, he never told me about the spinal leisions. He did not want to upset me. However, I had a bad feeling. I knew him well enough. He had said something over the phone about the nurses having permission to tell me everything and that just didnt sit right with me.
I left work a little early and when I got to the hospital, I heard everything. I do not think that I ever in my entire life was so shaken up, so upset and such a mess. This is a lot to hear when you think your boyfriend is having orthopedic problems and are 28 years old. THIS is insane.. unfair... unexplainable... but this is what we faced very suddenly. Chris, I think, had heard sooo much that day, that he just wasnt taking it all in anymore. I talked to neurosurgeons, neurologists, urologists, nurses... it was overwhelming. They were getting him a room and admitting him. They would be removing the one testicle on that coming Monday. They suspected testicular cancer that spread to the spine. I got myself together. I called Chris's roommate of 4 days. She was awesome. We couldnt have been luckier with the person he moved in with. She let me come get his stuff (clothes) for the hospital and eventually was totally understanding when he had to move out.
Chris and I have no children. The urologist helped us find a sperm bank. We were able to make a deposit before they removed his testicle. They were pretty certain there would be chemo soon, and we wanted the best chance of saving some sperm at this point.
Chris was put in ICU. Let me tell you... JFK ICU nurses are the best nurses you can imagine. He made a friend, Yvonne, who was actually retiring at the end of this year. She was awesome. Neurogogical doctors- teams of residents- visited him throughout the day - everyday. The morning of the surgery came (Monday June 9th) and we had some privacy and collected the "boys" in a cup. Talk about an interesting intimate session.. hmmmm
I then had to drive the boys to the sperm bank in Mountainside NJ. I had to keep them at body temperature. Very interesting morning. I signed my life away at the bank. Paid through the gills for the storage... yea.. and went back to the hospital to see Chris before his surgery.
Now it was time to biopsy and wait. They started talking to us about radiation and chemo. At this point, the steroids were majorly helping him. He was close to paralasis when he first got to JFK. THey were amazed that he drove himself to the ER. By Thursday, the final biopsy results were in.. They were the biggest surprise. It was not testicular cancer. It was some sort of Leukemia. He was going to be transferred to Robert Wood. JFK does not treat leukemics and Robert Wood is the best place for him to be. My doctor prescribed me Xanex. I now understood real anxiety and uncontrolled emotions. We went to Robert Wood. We met Dr. Strair... the head hematologist at the Cancer Institute and Robert Wood Johnson University Hospital. They are aggressive with treatment and they are wonderful. THis was just the beginning...
the Beginning of Jenn & Chris
Hi everyone. I am going to take you back to the beginning. Some of you know more than others, so this is just so everyone can be on the same page. (Note: unless otherwise noted, Jenn is the narrator of these blogs)
Chris and I have basically been attached at the hip since we first met. I don't know if I really believed in love at first sight, but I do now.
Chris and I have basically been attached at the hip since we first met. I don't know if I really believed in love at first sight, but I do now.
Chris and I met online... we talked for a couple weeks... and he finally talked me into meeting....
On our first date, Chris noticed that my one headlight was out when I pulled in. (I did not believe him). We joke about it now "You had me from your headlight is out" but its pretty true. The whole world seemed to disappear around us on that night. The rest is pretty much history. Everything about Chris felt perfect. Comfort from Day 1. Needless to say, you can guess who replaced my headlight that upcoming weekend, along with the other lights. I spent a lot of time in Plainsboro with him very quickly. We actually went vacuum shopping on our 2nd date (after dinner) and it was fun...
My brother Chris (yea, same name, of course) approved of Chris pretty quickly. We were at dinner at the Sherban Diner one night... and they had a pretty intense conversation where they realized they had a lot in common. I mostly remember that their love of cheese sealed the deal. It sounds funny... but this is sorta a direct quote. haha
What else? Chris had 2 cats when I met him. I am (was) severely allergic to cats. I become a frequent popper of Zyrtec. We had some fun times at Seasons with Christine, volleyball game, going out to Rod's for his birthday, Chickee and Pete's in Bordentown, hanging with Jeanie and Liv, meeting Christine & Mike's entire Rabbath family, lots of trips to diners, Target, BJs, normal stuff, but we always enjoyed time with each other, etc etc...
We had some challenges. Chris was going through a divorce when I met him. On top of sudden divorce-related expenses, Chris was having bouts with severe tendinitis. We considered moving in together. Luckily, that did not work out. Eventually he decided he would move out of Plainsboro to make ends meet. He found a place in Edison to be closer to me- sharing an apartment with a hairdresser who was renting out her 2nd bedroom.
June 1st, my brother and I helped Chris move. My parents agreed to let Rex (the 1 yr old cat) move in with me and my family as long as my dad did not have bad allergic reactions to the cat. His other cat, Tigger, moved back with Chris's ex-- she was originally her cat anyways. My allergies to cats seemed to disappear by this time anyways. Very odd. But, I do not even need allergy medicine around Rex. He cured me ;)
Chris's back was pretty screwed up the day we moved. I remember feeling so bad for him because I was trying to move stuff that wasnt as heavy... but he lived on the 3rd floor... Thats a lot of stairs after a while...
By June 5th, he was feeling a little better, except for a weird twinge that went down his leg when he picked up a box of tile at work. Later that night, we went to the Tim McGraw concert. By the end of the night (the concert was amazing), Chris's body wasn't feeling right. We got back to my house, went to bed. The next day was Friday ....
The attached photo is from the Tim McGraw concert
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