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.

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 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