Tuesday, November 30, 2010

Post Surgery

Chad's surgery went well, he's resting now.  He finally got back to his room last night around 11:45.  The doctor came and spoke to me right after surgery to let me know how it went.  Let's just say, not what they thought.

The original diagnosis was that the gallbladder was just blocked and they would remove it laproscopically, a few small holes and remove the gallbladder through one of them.  We were informed that if anything changed than they would need to go the traditional route and make an incision.  Well, that's what they needed to do.  After they started the procedure and they were able to see his gallbladder it was more than they expected to see.  It was actually gangrenous, yup that's right gangrene.  From what the doctor told us, it must have been lying there from when he first went to the hospital and his body being as sick as it was just accepted it.  When the new cells came in they saw that there was something wrong and started to fight, which is good news.  The outcome if we were to go home and they waited may not been good to say the least.  The next step is to closely monitor him for possible signs of infections and hope that he heals quickly.

Monday, November 29, 2010

Gallbladder - See ya, wouldn't wanna be ya!

So, the team has decided it is going to remove it. Right now it looks like I will be going to the OR around 5:30PM.

The risks of infection will not be too bad due to how fast my numbers rebounded after transplant.

Sunday, November 28, 2010

Stupid gallbladder........

It’s Crystal again, with an update…….

So what brought Chad into the hospital on August 7th is keeping him here longer, go figure!!

For those of you that didn't know, Chad went into the hospital originally that August night due to abdominal pain. They realized over the course of a few days, while waiting for the diagnosis of AML, that he also had polyps in his gallbladder. We thought that they resolved themselves after he started chemo, well they are back. Chad tried his best to eat as much as he could yesterday, those 1000 calories to get him home. We thought it was going well, he decided to try a grilled hot dog and half a grilled cheese sandwich. By 4:30 he was having excruciating pain in his abdomen, on a scale from 1-10 (10 being the worst) it was about an 8, and it lasted all night and hasn’t gotten any better today. They tried all sorts of things to help relieve the pain. They thought it could have just been gas, gave him some tums, but let's just say they didn't agree with him.

So, he's long story longer, he has had a CT scan which showed an enlarged gallbladder, an ultrasound that shows his gallbladder is distended with polyps and he’s preparing for a HIDA scan to see if there is his gallbladder is emptying or if it's blocked. They are going to start him on antibiotics now, in case the gallbladder is infected. At this point we’re unsure what will happen, they could remove it, but then there’s the risk of infection given he has no immune system, or they leave it and hopefully the pain will resolve on its own and we can manage it until it can be removed.

Chad said to me that he thinks that his new cells found the polyps and are telling them to get the F’out…… it makes sense, these new clean cells are fighting what his body thought was normal, but was not!

Saturday, November 27, 2010

Heading North on Sunday

My counts are back. As it stands right now, I am heading home on Sunday. They have removed me from all of my pain meds and all IV feeding. My “task” for today is to eat 1,000 calories. I never thought that would be tough to do. It is though when you have only been getting like 500 to stay down. I am getting there though.

They took out 1 of my Hickman lines yesterday. This is the tube in my chest. I had no idea they were going to do that yesterday. I was not prepared at all. No pain mends or nothing. I was yelling through the whole procedure. Finally, they had to stop and dope me up. (I think because I was scaring other patients.)

Ben and Jen have the kids and the Cooks my Mom and Tammy are cleaning the house getting ready for my arrival. House must be bacteria free top to bottom.

They had told us we would be down here 4 – 6 weeks. We are outa here in 3 weeks and 2 days baby!!! See ya later Bean town.

Thursday, November 25, 2010

Great Turkey Day News

Just got today's counts back. They are up again. If they continue rising and I can get back to eating solid food by Sat or Sun, they are going to send me HOME!!!!

Tuesday, November 23, 2010

Day 11 Post Translant Update

So today is day 11.  My white blood counts in my body are beginning to rise.  This means that the cells transplanted have begun to grow and develop in my body.  This is extremely good news.

I am feeling OK aside from not being able to eat solid food.  Other foods just cannot be "processed" by my body.  When I say this, I mean that I cannot swallow the food once I chew it.  It just stays in my throat until I eventually return it to where it came from.  IE the plate.  Until this passes, they are going to continue to "bag feed" me.

I have been sleeping a lot due to the lack of energy.  When you sleep close to 16 of the 24 hours in a day, it gets confusing sometime knowing what time of day it is.   I was off by a whole day the other day.  Looking back, I was impressed at how amazingly calm my nurse was explaining that it was it was Sunday night 4:30PM, not Monday morning 4:30AM.  I was pretty adamant to her that she was wrong.

As a result of the transplant beginning to take, I have developed a rash on parts of my back, legs and arms.  They think it could be GVH.  They are going to monitor it.  If it is GVH, this is the form we want to get.  Treatable and a type that appears quickly.  The treatment for this type of GVH is a pill that has steroids in it.  Will know more by the end of the week.

Crystal is coming down for Thanksgiving with the kids.  I am very excited to see them.  It has been close to 3 weeks since I have seen them.

Friday, November 19, 2010

New Pump Day +7

New pump, can it get any bigger....6 pumps!

All my lines being used and my new friend the pain contoller
So, this is actually Crystal updating you all.  Now know that I'm not as great a writer as my hubby, but he's making me post something.  He has hit his pain med (dialudid) button a few too many times today and is feeling a little tipsy.  But, all in all, everything is going as expected.  Nolan's birthday is coming up on Tuesday.  I plan on coming down with the kids over Thanksgiving.  Our favorite nurse, Donna, has convinced us to definitely bring the kids in for Thanksgiving, see we have been comtemplating whether or not our little princess will be able to control herself while here.  So, Donna assured us that there are plenty of nurses that are working and they all get paid plenty to help.....oh they don't know what they are getting themselves into.........

Wednesday, November 17, 2010

Day 5 Post Bone Marrow Transplant

So today is day 5.  Not a lot to report.  I have been extremely tired.  Still only able to eat soft foods because my throat is extremely sore.  Doctors are saying it will get worse before it gets better.  I am choosing not to believe them and feel I am on the mend.  At night they give me Adavan and Oxy to help with the pain.  It works really well!

So overall, doing OK, walking about 30 minutes a day, eating pop tarts and pudding and getting sponge baths...  Livin the dream baby!!!

Monday, November 15, 2010

Quick Check-In

Day 3 post transplant.  I am feeling OK.  Just really tired as a result of the radiation I had last week.  I am starting to get some mouth sores which has limited my food choices.  I am down to apple sauce, pudding, ice cream and strawberry pop tarts. 

My room has no shower in it so I have to have a sponge bath everyday.  Typically, I have this Jamaican nurse that takes care of me most days.  She is pretty cool.  Her name is Miss Donna.  She is always asking me "How ya doin boyfriend?" She is really nice with a thick Jamaican accenct. 

Donna always gets my sponge bath ready for me and washes my back for me.  This weekend when Crystal was in, Donna came in early and said "Get up, we need to get you cleaned up before your lover come in darlin!"  Crystal was still at the hotel.  She is pretty funny..

Trevor came in for a visit today before their trip to Vegas.  It was good to see him.  Also, before I came in for transplant, we had some family pics taken.  Here are some of the proofs.  Thanks Kelly!

Saturday, November 13, 2010

Out For a Walk

Crystal made me get out of bed for a walk.

Day 1 Post Transplant

My New Cells
Transplant went off without a hitch last night.  I got hooked up a little after 8:00PM and the transplant/transfusion was done by 9:30PM.  Next we wait for the new cells to start to grow within my body.  This should start to happen over the next 12 days.  Doctors will monitor for signs that my body may be rejecting the new cells or vice versa.  I am on anti rejection drugs just like if I was getting an organ transplant.  This is a pretty typical treatment plan.

I feel good and am so glad this step is behind us.  A lot of people are not lucky enough to find a donor like we did.  I could not imagine what that would feel like.  To know that you could be cured only if....

Friday, November 12, 2010

Transplant Day!!

So today is the big day.  The donor cells are due to be at the hospital at 2:15PM today.  From there, the lab has some work to do to them.  Latest we have heard the transplant will take place between 5PM and 8:00PM.  The transplant will not be any different than a blood transfusion.  A small bag with the donors cells will be hung and infused into my body.  It is really an uneventful event...

We are excited and nervous.  We are confident we made the right decision though.  Without transplant, doctors were not talking in terms of years.  The leukemia I have is just too agressive.  With transplant, many people go on to live normal lives and leave leukemia in the dust.  I may end up with some GVHV in the form of skin rash or visions issues or maybe even a small dose of mad cow, but that is much better than the alternative!

Thank you again to everyone who has been so supportive through this whole ordeal.  It has meant the word to Crystal and myself and we could not have made it through all of this without each and eveyone of you.

Tuesday, November 9, 2010

3 Days Until Transplant

I am feeling much better today.  Had somewhat of a rough night but today has been pretty good.  I have been able to eat somethings and have not been exhausted all day.  I made two trips to radiation today.  After each trip, I spend some time walking.  This morning I got in 10 minutes, this evening close to 20.  It feels good to get moving again.  Two more sessions tomorrow and one on Thursday.  They have an iPod player so I made a "Radiation" playlist.  Includes U2, Johny Cash, Janes Addiction, Kid Rock, Sons of Sylvia and Linkin Park.

I Skyped with Crystal and the kids last night.  I also Skyped with my sister and Mom today.  It was good to be able to see their faces...

Each bone marrow section of the hospital is broken up into pods.  It is very strange.  My section is a 3/4 circle.  The nurses station in the middle with the rooms on the outside.  Our rooms have no doors just curtains.  From a remote in my bed I can operate the curtains, the blinds even the music. . (bawnggg chickee bawnggg bawngg)

I have no shower in my room, so I need to take sponge baths each day.  I am the type of person that likes to take a 110 degree shower for 20 minutes.  To be reduced to a quick sponge bath, it's going to takes it toll on me.

Monday, November 8, 2010

4 Days Until Transplant

On four days left.  I am ready believe me.  The past two days of high dosage chemo have kicked my ass.  They have done in 2 days what it took a week of chemo in the past to do.  Think of every chemo side effect that you have heard of.  I have had them all in the past 2 days...

I started full body radiation today.  I have it twice a day and it lasts 20 minutes.

I am ready for transplant to be over and to move forward.  We are ready to throw it into neutral after that because it is all downhill to Groveville!

Saturday, November 6, 2010

6 Days Until Transplant

Sorry for not posting anything for a bit.  Been pretty busy getting ready for our stay in Boston.  We came down Thursday night.  We were coming through Seabrook around 5:00 so I sent Benny a text seeing what was up.  His office is right in Seabrook.  Most of the time he is on the road, but he was in the office on Thursday and ended up going to the Applebees with us.  Worked out great.

On Friday morning, I was due to be admitted at 10:30.  There is a shuttle that leaves from the hotel every hour that goes to the hospital.  We are only about 3 miles from the hospital, so we took the 9:30 shuttle.  On the way there, we were stopped in traffic and saw the funniest thing.  This guy was parallel parking in a spot that his car would just barely fit in.  His technique was to back in until he hit the car behind him, pull forward until he hit the car in front of him, back up until he hit the car behind him, pull forward until he hit the car in front of him.  After about 10 of these maneuvers, he was parked.  Everyone on the shuttle was giggling watching this idiot trying to park. 

We got admitted and they sent us to a waiting area.  The first task at hand was to insert 2 Hickman lines into my chest.  These are lines that they will deliver my chemo, fluids, antibiotics, nutrition and draw blood from.  They go into my chest and they tunnel under the skin to my jugular.  Yes, I said tunnel under my skin and jugular!!!  I am getting sick just writing this...  They used what is called conscious sedation for the procedure.  I asked them to go extra heavy on the sedation side of things.  They must have, because I do not remember the procedure at all.  They are extremely sore right now though.  In an effort to keep me "comfortable", they have been giving me pain killers to reduce the discomfort.  Hopefully I will not need them too much longer.

After that, we were brought to my new home for the next 4 - 6 weeks.  In our section, there are seven transplant rooms.  I noticed a guy about my age in one of the rooms.  The rooms are extremely small.  There is enough room for a bed, a chair and night stand.  The nurse spent a lot of time going over proper hygiene due to how poor my immune system will be.  Whenever someone enters my room, they must were gloves and a mask.  I was also started on a myriad of drugs to prepare for transplant.  I am now taking over 20 pills a day along with several mouth rinses.

Today, I had my first round of chemo.  Tomorrow will be my second and last round.  Mon - Wed, I will be having full body radiation twice a day.  Each session will last 20 minutes.  Thursday, I have only one session of radiation.  The weeks activities culminate with the actual transplant happening on Friday.  We are not sure what time yet.