Christmas Update

Hello from sunny Hollis, Maine.  I am still on the mend.  Feeling OK, just still loosing weight due to the fact I am not eating much.

We had a great Christmas.  The kids are at the perfect age.  The grandparents went a bit overboard, but that is to be expected.  The kids had a blast opening presents  (for over 2 hours).

Have a Happy New Year everyone!!

Chad

Day 39

Feeling good at day 39.  Tomorrow we head to Boston for our weekly checkup.  Our first appointment is not until 10AM.  While we are down there this time, they will also be removing my last Hickman line from my chest.  Not sure if you remember, but they removed the first one when I was still in the hospital with no sedation.  Screaming and vulgarities were involved.  Our nurse has assured us that there will be pain meds and sedation this time around.

I am eating a bit more food now.  I have started having smoothies and Carnation shakes.   Giving me some much needed calories.  I have been walking 15 minutes a couple of times a day.  Next week, I would like to add in a slow jog and get the bike trainer setup.

Hope everyone has a great holiday this year!  It definitely is a special Christmas this year at the Davis household.  We are ready to put 2010 in the history books.

Day 34 Post Transplant

Well, we are at day 34.  So far, the donors immune system has done a nice job setting up shop within my body.  My white counts are up are and my new immune system is growing.  We head down to Boston tomorrow (Friday) for a check up and also a followup with the gallbladder surgeon.  They will also be doing a test tomorrow that measures my immune system.  It will tell us what percentage of my immune systems is the new donors system and what part is left over from my old crappy, defective immune system.  We are shooting for a high percentage of it being my new immune system.  It will take a couple weeks to get those results back.

The biggest difficulty I have right now is that all the chemo and radiation before the transplant wiped out my taste buds.  Nothing tastes good.  I am down to Peanut Buttercup Cereal, PB&J sandwiches (they are tough to swallow) and chocolate pop tarts.  As  result, I am stuck at 160lbs.  Since I am not eating much, I do not have a lot of energy.  Since I do not have a lot of energy, I cannot exercise and get stronger.  It is very very frustrating.  They say this will eventually pass.  I hope it passes sooner rather than later.

For those of you that have asked about sending me baked goods, I cannot have anything "homemade" for the first first 100 days after transplant.  Just about the worst time of year to be on that restriction!

First Check Up Appointment in Boston Today

Today, we had the first of many follow up appointments in Boston.  These are weekly appointments at Dana Farber to check on my progress.  Today's appointment was at 9:00AM.  To make things easier, the kids spent the night at Reggie and Vicki's.  We were out of the house by 6:15AM.  Crystal had packed me snacks because I cannot eat food from restaurants for the next few months.  Food tastes terrible right now.  The radiation pretty much wiped out my taste buds.  I am struggling to get 1000 calories a day into my system.  As a result, I only weigh about 160 lbs.

We hit a bit of traffic, but ended up getting there around 8:40.  They drew a bunch of blood and then we waited to speak with the nurse practitioner.  She went over my blood counts and said that things looked great.  I am right where I should be on the progress meter.  I am at day 28.  Meaning I am 28 days past transplant.  We also found out that it is OK to have adult visitors at the house as long as they are not sick and have not been around anyone sick.

Overall, I am feeling OK.  It is great to be home.  I actually drove today and picked up the kids.  It was nice to feel "normal" and be part of society again.  The nurse told us today my taste buds may take several weeks/months to redevelop.  Until that happens, I need to just keep trying different foods until something clicks.

Also Crystal and I wanted to also thank everyone who was involved with and who generously donated towards the benefit being held at the Gold Room tonight. 

HURT 100 - Race for Davis

Crystal works with a guy named Brendan Gilpatrick.  In January, he is running in a race called the HURT 100.  It is a 100 mile endurance run in Oahu, Hawaii.  In an effort to help our family, he has setup a donation page.  Please check out Brendan's page.  http://www.racefordavis.weebly.com/

Home at Last, Home at Last

First I must say it was amazing to sleep in my own bed last night. No nurses, weird noise, other patients, call bells, air filters or vital checks. Just silence and a comfy bed.

It was also amazing to see the kids. We did not tell the kids I was coming home. Crystal went to pick them up and I was lying on the couch. I watched them come in and take hats and coats off. Paige walked into the living room and said” hi daddy”, then ” HI DADDY!!!!!!” The Nolan came running in. It was a tear jerker moment. But then again, everything is lately for me.

Food is tasting good. I am down to 160. I was 184 when I went in. I ate very well at home today. Things still taste off, but not terrible. I think it will only take a week or two to get back to weight. I would like to get to 170 or so and hold there. I then need to build some muscle mass back.

I am basically on quarantine for the next couple of months. I do not need to wear a mask at the house. We are not to have visitors for the next month. If someone does stop by, they need to mask and glove up. If the kids start to show the first sign of illness, they will need to mask up at the house and so will I. I need to take roughly 10- 12 pills each day. I take my temp twice a day. If I spike over 100.5, I may need to be re-admitted due to the fact it could be due to some sort of infection. We have a checkup at least once a week in Boston for the next couple of months.

Looking back over the posts over the last month, there are some parts I do not remember. I can truly say, it was the toughest and worst month of my life. I missed my family, friends and had some pretty low, low, low days. There were times I was convinced that I was not returning to Maine. I was not going to be leaving the hospital period. That is a terrible feeling. What kept me going were all the well wishes and positive messages sent via e-mail, over the blog, via phone etc. I cannot thank each of you enough for everything you have done. All of you saved my life on several levels.

We still have a tough battle ahead, but I truly feel the worst is behind us. Several people have said I have a guardian angel and I am starting to believe that. Hopefully, the angel can take a break for a while, kick back and enjoy a Shipyard Prelude over the holidays :)

Hello Hollis!!!!!!!! Just Released.

Got released today. I cannot explain how happy I am. I will update the blog over the next few days with the details of my Boston stay.

Still in Boston

Right now, they are waiting for digestive track to "firm up" a bit before they are ready to send me home. I am down to 160 from 184.  Have walked a bit today and  everyday, but feel pretty beat up.

Ready to go home.  Today is day 31.  Ready to come home.  Could be anyday now.

Boston Update

The removed galbladder is pissing me off.  Once things settle out, I should be able to come home.  Just giving me stgrange digestive issues they do no want to send me home with.

Hope all is well with all of you this week  I hope all of you people are getting their Christmas shopping done and not wasting time reading blogs!!

Galbladder update

Quick update. Feeling better after a couple of rough days. Mostly surgery pain . Muscle tissue healing and feeling better. Will update later in day on Friday after speaking with surgeons.

Chad

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.

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.

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!

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.

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!!!!

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.

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.........

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!!!

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!

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....

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.

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.

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!

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.

The Countdown is Officially On

We had been told I was going to be admitted to Dana Farber on November 5th for my bone marrow transplant for several weeks now.  This date assumed that my leukemia was not going to relapse.  On Tuesday of this week, I went into the Maine Med for a bone marrow biopsy and a lumbar puncture so they could ensure my leukemia is still in remission.  Yesterday while in Boston having tests done and signing consent forms, we got the results.  My bone marrow is clean!  Leukemia is still in remission and the date of Nov 5th is a definite now.  We are very excited to move forward with the next step of this stupid process.

Some of the tubes to be filled

Yesterday, we had to be in Boston at 9:00AM for our first appointment.  We were up around 4:30AM and left the house around 5:30AM.  That is early for us to say the least.  We hit about 30 minutes of traffic.  By the time we parked, we were at our first appointment around 8:45. 

The schedule went like this:

9AM - Program Nurse.  She give us the timetable of what will happen when after being admitted.  Basically, I check in Friday, Have chemo Saturday and Sunday, Full body radiation Mon, Tues, Wed and Thursday.  At that point, my immune system will be wiped out.  On Friday the 12th, it appears I will have my actual transplant.

10AM - Met with radiologist - uneventful aside from her name, Dr. Ng (that's right, no vowel, Ng)

11AM - Had lung blocks made.  Basically lead things to cover my lungs during radiation so they are not damaged by all the radiation

12PM - Blood draw!!!  Typical story here.  They tried sitting me in a chair.  I said I need to lay down.  Nurse rolls eyeballs etc...  They find me a recliner to sit in.  Nurse states that they will be drawing a lot of blood!  Over 20 tubes!!!!  They got an icepack for Crystal to use on me.  The whole draw took close to 5 minutes.  I must say, for whatever reason, it was one of the "easiest" blood draws to date.  I am not saying that I did not whine a bit and Crystal did give me a few looks that basically said, "Toughen up you sissy!"  But all and all, it was not too bad.  Not sure what is going on.  Am I getting used to needles???!!

1PM - EKG and signing of consent forms - uneventful

2PM - Met with social worker.  Group hug stuff.  Not too bad.  She gave us some info on cheap hotels and parking stuff.

3PM - Pulmonary function test.  This was pretty cool.  They had me in a glass box blowing into a tube and a few other tests.  For the most part, I am way better than average as far as pulmonary functionality.  I attribute that to training over the last few years.

Got back on the road around 4:30.  Hit 30 minutes of traffic again.  Got home a little after 7:00M.

The glass enclosure

The keep the donor's information fairly private for the first year.  All we know at this point, is he is a 26 year old male (just a young buck right Katy?), is either from Europe or has traveled extensively in Europe.  They need to disclose that because there is a chance he may be a carrier of Mad Cow Disease.  So, after transplant if instead of greeting you with "Hello."  I say to you "Moooooo.", it is more than likely I have some Mad Cow running through my veins...

Family Dinner

Yesterday, our families held a benefit dinner for us before my trip to Boston next month.   Both sides of our families were there along with a few close friends.  I think there were between 60 and 70 people there.  It was extremely humbling to say the least.

I am going to be in Boston over Thanksgiving which is usually when I get to see the whole family.  I was bummed that I was not going to be able to see everyone this year due to the bone marrow transplant.   As the "cancer patient" and a self pronounced introvert without the aid of a beer or two, I was somewhat anxious. Keep in mind, this is at a gathering of my closest friends and family.


Yesterday seemed like Thanksgiving.  Everyone was there and it was a great atmosphere.  I did not feel like the "cancer patient".  I realized just how fortunate Crystal and I are to have such amazing, caring families and friends.  A few times yesterday, I had to attribute my "runny eyes" to being a side effect of the brain radiation...  Not sure if anyone bought it or not.
 
Even though leukemia sucks and we would rather not be going through this, it has made me a better person. It has opened my eyes to the important things in life.  I know that sounds extremely cliche, but it is true.


Banner that was created at yesterday dinner.

Tomorrow at 6:00AM, we head into the Maine Med for the morning.  They are going to take another bone marrow biopsy (drill into my hip and extract bone marrow) and also extract some spinal fluid and inject me with chemo into my spine.  The purpose of these fun procedures is to ensure the leukemia is still in remission in my bone marrow and central nervous system.  We should have the results by Thursday or Friday.  If I am not still in remission, it could push back transplant.  I feel fine though and do not have any symptoms so we feel pretty good going into tomorrow's procedures.  I also feel pretty good that they will be putting me out during the procedures :)

Back on the bike trainer and hitting the weights...

Old Friends

I was discharged from the hospital 1 week ago today.  Since that time, I have gained 8 of the 14 pounds back that I lost during my hospital stay.  Problem is, I lost mostly muscle in the hospital and have been replacing it with mostly good old fat.

So on Tuesday of this week,  I hunted around for some bike shorts (very bottom of the shorts pile in the closet) and found some body glide.  I pumped up my tires and thew the Trek in the trainer and threw on my $350 dollar bike shoes I got for like $60 (Thanks Kyle and Paul LePage!!)

Our Training / Furnace Room

On Tuesday I only spent about 15 minutes on the bike, Wednesday I got up to 20 minutes.  Today I went 25 and threw in 10 minutes of weights at the end.  It is an amazing feeling to break a real sweat again!!!  The only sweat I have produced over the last 2 1/2 months has been due to breaking a fever in the hospital. 

If you are a representative from my Short Term Disability company or my Long Term Disability company researching me and you read this and say, "Hey, there is no reason this guy should be out of work!"; realize the following.  Each of these workouts need to be followed up by a two hour nap.  They completely wipe me out.  Also realize the sole purpose of these workouts are to build up my strength and immune system so that I can return to work as soon as possible after transplant so you will not need to send me a check each week!

Real Sweat!!!

Check up today at the Maine Center for Cancer

So today I had a check up at the Cancer Center at 9:00AM.  Crystal was able to get the morning off so she could come to the appointment with me.  Seeing that we had close to an hour to kill between kid drop off and the appointment, I took her to the International House of Pankakes. I know, I know, big spender!  Nothing but the best for my Crystal!

So we got to my appointment and we were one of the first ones there.  From the waiting room, I could see into the lab area and there was a person having their blood drawn.  It looked like the older lady drawing the blood was hesitant and was being "overseen"" by another lab person. 

"Look at that.  There is a trainee in the lab.  If I get her, I am going to be pretty adiment that she was not going to be drawing my blood."  I said to Crystal.

Crystal just rolled her eyes...  You see, at the IHOP, we had a lengthy discussion on how I was going to behave during the "blood draw".  I was going to go to my happy place and just deal with the fact that I was going to give blood.  After seeing the trainee, I could tell that plan was pretty much going out the window.

Out of the lab comes the trainee and she calls my name.  I am sure I went completely pale at that point.  She sat me in the blood draw chair.  I immediately ask her if she is a trainee. 

"If you consider doing this for 30 years a trainee, then yes I am." She answered.. 

Phew!!  I then said that I would need to lay down for the blood draw to prevent me from passing out.  The older lab lady rolled her eyes and told us she would find a room for us so I could lay down for the blood draw...

The rest of the appointment followed pretty much the same story line...

Bottom line, my blood counts are up.  My immune system is healthy right now and I feel great...  Next appointment is next Tuesday at Maine Med.  They are puttingg me out, doing a bone marrow biopsy to make sure the leukemia is still in remission.  They are also going to extract some spinal fluid to make sure there is no leukemia in my nervous system.  While I am out, they are also going to give me a shot of chemo in my spine while they are in there for the fun of it...

First Weekend Home and Plan for Boston

Just wanted to give everyone a quick update. I got home last Thursday. On Saturday, Nolan had his final football games of the season. They had a round robin between the 4 flag football teams. They won all four games and ended up being undefeated for the season. Their success can be attributed to the great coaching they had this year.  Thanks Rick!  Nolan played great this weekend.  He got a touchdown and had a few great defensive plays.

My appetite is definitely back.  Since I have been home, we have had a ham boiled dinner, home made steak and cheese sandwiches, peanut butter hot fudge sauce, yellow cake with chocolate frosting and blueberry pancakes.  I came home at 173lbs, I am up to 177 today.  Going to start making some "healthy choices" starting tomorrow.

We heard from Boston today as far as our schedule for Boston goes.  It looks like at this point we will be going down for the day on October 29th for tests and paperwork.  We will be heading back down on November 5th to check in for the transplant.  This will be a 4 to 6 week stay.  We are unsure at this point what day the actual transplant will happen.  It will probably be about a week after I am admitted.

When I first am admitted, I will go through another high dose round of chemo and full body radiation.  The goal here is to completely wipe out my defective immune system.  My immune system does not see my leukemic cells as "bad guys".  My white cells which should attack these leukemic cells, just think they are normal cells and allow the leukemia to grow within my body.  If left untreated, the leukemia will take over, kill my immune system and will not result in a happy ending to this story.

Once my defective immune system is wiped out, I will be injected with my donors bone marrow (immune system).  I will be given drugs to try to suppress my defective immune system.  Eventually, my donors immune system should start to develop in my body.  If all goes as planned, the donors immune system will take over, see my leukemic cells as "bad guys" and attack and kill them. 

The doctors have told us there a few things that could go wrong.  My donors immune system may never start growing in my body.  If my donors immune system does begin to grow in my body, there is a probable chance that it will see some parts of my body as an invader because they are different organs than the donors organs.  This could be my skin, my eyes, my lungs, my stomach.  Basically any part of my body.  This is called Graft Versus Host Disease (GVHD).   When this happens, my donors immune system growing within my body will attack what it believes to be the invader.  It is treatable, depending on the severity of the "confusion".

Once I come home, our house will need to be kept extremely clean.  My sisters and parents have hired a cleaner to come in once every two weeks over the last couple of months.  It has been a huge help for Crystal.  When I come home from Boston, my immune system will be pretty much non existent for close to a year.  If I go in public during the first year, I will need to wear a mask and gloves.  The kids will not be able to have friends come over.  The house will need to be spotless at all times.  The tub /  shower will need to be washed each day.

The next year is going to be tough to say the least.  Crystal and I have a great support system and we thank you all!  We are ready for this stupid challenge.  We will get through this and we will kick leukemia's ass.  People have said we have a great attitude about all of this.  How can you not I ask?  What else are you gonna do?  Feel sorry for yourself and ask why us?  Tried that for about 2 days.  Didn't help one bit!

Getting iPad ready for Boston

I am loading up my iPad with music for Boston.  Thought I would share some of my playlist with you... 

Crystal and I's wedding song...


Unbelievable performance!

Video Update from Home

Going Home!

Bag is Packed

Doctor came in this morning at 7:00 and said, "I think I am am going to send you home today.  Even if your numbers aren't all the way there, they are trending in the right direction." 

I said, "Great, that is good news, thank you!"  I felt like giving her a hug but I was able to exercise some self restraint.

The last thing that happens when you get released is that they pull your PICC line.  This is what they give me chemo, antibiotics, fluid and draw blood through.  It is a port with a small hose attached that runs through a vein from my bicep to just above my superior vena cava (entrance to heart, I had to look that up).  To start with, the thought of this thing being inside me freaks me out, but that does not take much.  The thought of removing it almost makes me physically ill.

The procedure is pretty straight forward.  They remove the dressing around where the line enters your bicep, tell you to bear down like you are having a bowl movement and then they "yank".   The procedure does not hurt at all, but is a strange sensation to say the least.  They came in at 11:00 to remove mine and were done by 11:10.  Aside from a well concealed panic attack during those 10 minutes, it went well.

So, Crystal is on her way in right now.  Can't wait to get home!

Numbers Going Up, Up, Up...

So, I finished up radiation this week.  Yesterday was my last session.  I am feeling good still.  They let me keep my "mask".  I now have it hanging in my room.  I keep telling people I am going to hand out Halloween candy wearing it...

My numbers have also started to climb.  Based on the way they are rising, I should be out on Friday or Saturday.  Hopefully on Friday so I can go to Nolan's flag football round robin tournament.  His team is undefeated so far this season.

Crystal was in this morning and brought me in some G2 and some more Greek yogurt.  My sister brought me in some on my first stay at the Maine Med, I am addicted to the stuff now.  It has tons of protein and helps with maintaining stomach chemistry after chemo.  Mom also came in this morning and brought me in a piece of chocolate cake that she made last night.  I think I will dig into that after this blog post.  That should help the stomach chemistry! 

The numbers.  Need ANC to get to .50 in order to go home.
Today it is at .27


While Crystal was here, the doctor also came in.  She had some updated news on transplant dates.  As it stands right now, it looks like I will be admitted into the hospital in Boston on November 5th for the transplant.  Not sure what day the actual transplant will happen.  Based on what I have read, probably about a week after admission.  We have a consult with several doctors in Boston on 10/29.  My doctor here is also seeing if we can speed up the process at all.  She is concerned that I may relapse before the transplant based on how quickly I relapsed last time.   We will have to wait and see what happens.

 

 In Boston, there is a whole team of doctors, nurses and coordinators assigned to my case.  Crystal is starting to work with the coordinators to arrange for housing for her while I am down there.  She will more than likely stay on the weekends due to the 2 1/2 hours it takes to get Boston from our house.  Unlike here at the Maine Med, she cannot sleep in my room.  From what they have told us, I will be in Boston for 4 - 6 weeks depending on how well my body responds to the transplant.  I have told my body to respond well, so I am sure I will be out in 4 weeks :)

View from my hospital room.  Not bad except for the smoke stack.
When I had my double vision, there were two of them!

In real life, I love "people watching".  In the hospital, this is not as much fun.  Each day as I do my two miles walking around the hospital,  I tend to keep my eyes to the ground.  This helps shield me from the sights you see in the hospital.  You see, my walking loop cover the cancer floor and the surgery recovery unit.  A lot of these people are in pretty rough shape.  Looking down helps shield you from the sights but there are still the sounds.  From today's walk I heard the following:

• Nurse to Nurse:  "He had a heart attack and passed away a 1/2 hour ago.  His wife is on the way in."
• Patient vomiting as I walked by their room.
• Elderly woman to doctor: "How much time does he have left?"
• Woman crying uncontrollably as I walked past what appeared to be her husband's room.

These are only the things that I can remember hearing.  For a while, I wore my iPod while walking to block out the sounds.  After a week of that, my battery died and I headed out for my walk without it.  I started to realize that there are some pretty good sounds also you hear while walking around the hospital if you listen closely.  From today's walk, I heard the following:

• Nurse to patient:  "Keep your chin up, your doing great!"
• Nurse1 to me:  "Hey Chad, how ya doin today?  How is Crystal doing?  Tell her I said hello."
• Nurse2 to me:  "Getting your miles in?  Good for you."
• Doctor to patient:  "Your bone marrow biopsy came back clean." 

Some days there are more "negative" than "positive" sounds to be heard in the hospital and vice versa.  Not sure what profound statement I am trying to make here other than I do not wear my iPod anymore when I walk around the hospital...

 

From my room, I have been able to watch the Gilman Street
 water main renewal project. 
They are finishing up today with paving.  Exciting stuff!

 



Steak and Potatos

So right now, I basically have no immune system.   Every four hours, they check my vitals.  A vital check consists of a blood pressure reading, heart rate check and a temperature check.  As soon as I hit 100.5 or above, a flurry of activity happens.  (Regardless of what time of day or night it is.)  A fever is the first sign that there is some type of infection growing in my body.

On my last stay at Maine Med, I only spiked a fever twice.  The first time, it was preempted with severe chills to the point where my whole body was shaking uncontrollably.  The nurses kept putting warm blankets on me but the chills did not stop.  Eventually they game me an IV of Demerol at around 1:00AM.  The chills went away almost immediately and I entered a happy place that made me grin, giggle and drool a little bit.  As soon as the shakes stopped, a fever set in.

When you spike a fever, someone comes up from the lab to draw blood.  Directly from your vein.  A lot of blood.  They take that blood back to the lab and put it in test tubes and see if anything grows.  Then, based on what grows, they know how to treat it.  If you have read this blog at all, you know I am not fond of needles or blood.  Also, all the nurses on this floor know that fact.

When the girl from the lab showed up to take my

blood at 2:00AM, I let her know how much I did not like needles and asked if there was any other way to do this.  I was not making much sense I am sure due to the Demerol.  She was a 20ish year old Somalian girl with full head dress on.  I remember her being very nice and calming.  During the actual blood draw, my nurse came in and actually held my hand.  I know, pretty pittiful...

So, Friday night when I spiked a fever, I knew that meant a blood draw.  Who else walks in from the lab but the little Somalian girl from over a month ago.

"Hello Mr. Davis, I remember you!  Do you want me to go get your nurse so you can hold her hand?"  She was giggling as she asked the question....  I laughed and said that would not be necessary this time around as long as she could deal with seeing me cry.  She stayed in the room for a while after the blood draw and chatted with me.  She is was very nice. 

I spent most of the day Saturday watching the Hawaiian Ironman race live on the computer.  It is truly an amazing race and it was also a great race this year.  Definitely gave me some motivation and inspiration for this stupid "race" I am currently running in.  I was tracking a guy from Canada.  I have just started reading his blog.  He is guy that just few years ago completely out of shape.  He loves beer and every year has a "beer run" at his house.  It consists of a 5K run and you need to drink a beer at each K.  He has been triathlon training for the past three years and yesterday, he crossed the finishline of the toughest race course in the world carrying a Canadian flag in one hand and a beer in the other.  It was a riot but goes to prove the point that nothing is out of reach without hard work and dedication.  Check out his blog.  http://trainingpayne.blogspot.com/

Crystal came in last night and spent the night.  The Dixon's watched the kids at our house.  From what I understand, three of them were not that well behaved.  The big surprise is Paige was the good one.  She said to Katy, "I am being good aren't I?"   Anyway, I told Crystal I was craving steak and potatoes so she stopped by Bugaboo on the way in and got me 14oz of prime rib with fried onions, garlic butter and smashed potatoes.  Man was it good.

Feeling OK today.  No fever.  Counts are still going down.  May need some blood tomorrow as my red count is only 7.9 today.

Ironman World Championship Today

Today is the Ironman World Championship.

New Blog Look and Update

To pass some time, I updated the look and feel of my Blog.  I have had the same layout for the past couple of years.  I went with blood red..  (get it, I have cancer of the blood...)

I just finished up day 10 of 12 of radiation.  No side effects aside from some dry skin on my scalp.  Not even sure if those are related to the radiation.  I finished up chemo 9 days ago.  My counts are pretty low now.  I have been running a slight fever the last couple of days, but nothing major. 

We have been in touch with the doctors in Boston as far as working on a timeline for transplant.  There are many tests that I need done before transplant.  Most of the tests can be done here at Maine Med so my doctor here has started to arrange for that to happen so as soon as I am ready, I can head to Boston.  Today I had chest xrays and a hemodynamic test.  I knew what the xray was all about, but no idea what the hemodynamic test was...

Everyday, when they wheel me to radiology, we pass a department named Nuclear Medicine.  I always wondered what they did there.  Well, for this test, instead of pushing me past the entrance, they took a left into Nuclear Medicine.

The technician explained that they were going extract blood from me (wicked excited about that), mix into my extracted blood a  radioactive isotope (wicked excited about that), stir it up "Really good." (as the technician said) and re inject the cocktail into my arm. (wicked excited about that).   It is also mixed with a pharmaceutical so that blood goes right to my heart.  Once this magic blood is inside me, they are able to take pictures of my heart and my blood flow and see how healthy it is.  The whole procedure took about an hour.  Not too bad.  Now I know one thing they do in Nuclear Medicine.

So next week, I will finish up radiation, take some additional tests in prep for transplant and then just wait for my counts to come up.

In my last post, I mentioned that I was watching basket weaving videos.  I thought you may be interested in seeing one of the videos.  They are kind of funny..

My ultimate goal is to be able to weave a fishing creel at some point similar to the ones pictured here.

No news is good news... Day 15

No big news from Maine Med. My counts have dropped and I am now neutropenic. If I leave my room I need to wear a mask. I feel fine though. Just completed day 7 of 12 of radiation. No side effects yet. Double vision has cleared up along with leukemia related rashes.

We have been in contact with with the transplant specialist in Boston to try to get an idea of when transplant may happen. He has stated that they want me in complete remission before they attempt the transplant. He mentioned mid November as a possible date. They are still waiting to confirm a donor. It is our understanding I have one (many actually) just need confirmation that they still want to donate.

Now just playing the waiting game for counts to come up. Probably will be a couple of weeks before I get to go home. Getting pretty bored. Just spent 2 hours watching You Tube videos on learning how to basket weave.

Weekend Re-cap

So, didn't get to spend as much time as I had hoped at home, but I did make it out of the hospital. Here is the weekend re-cap...

I got the news on Friday that I would be able to get day passes over the weekend. Since my chemo is done, my immune system is still strong and the radiation department does not work on the weekend, it was going to be an uneventful weekend for me. Doc said I just had to get my blood work done each day, then I was free to go. As soon as I found out, I called Crystal. She was very excited. It was going to be a busy weekend though. She was running in the Dempsey Challenge 10K in Auburn at 8:00AM Saturday. Nolan had a football game at 10:00AM on Saturday also.

On Saturday morning, the nurse came in with my day pass. He said it was good for 4 hours. I was under the assumption it was going to be a full day pass. I said this may extend to 5 or 6 hours. He said fine. Just let me know when you leave and return. You see, the insurance company does not like to pay my $1,500 a day room charge if I am not here, so it is more of a paperwork thing than anything.

My sister Rhonda showed up to pick me up at 9:00AM and we were out the door! We were going from the hospital directly to Nolan's football game. He did not know I was getting out for the weekend. She asked if I wanted to stop anywhere. Since it had been over 2 months, I asked her to stop at Dunkins for a coffee and an Everything Bagel. You see, these are probably the damn things that gave me leukemia. For several years, I have had this combination everyday. To my disappointment, I do not like them anymore. They just do not taste right. Weird?

So we arrived at the football field and I saw Nolan back to. I went up to him and patted him on the back and said, "How ya doing buddy?" He was surprised to say the least. Crystal was just finishing up her race and had started the trip from Auburn back to Standish. Was a great game. Nolan's green team won (again). 

Crystal got there as the game was ending. We packed up and went back to the house. It was nice to be home. I made a peanut butter and fluff sandwich. Not typical of me but it was unbelievable. Then I spent an hour or so outside with the kids. It is amazing how out of shape I have gotten in the past couple of months. I was exhausted after an hour of "playing". I ended up napping for an hour or so.

It was then getting close to 3. The plan was for the Crystal and the kids to bring me back in, spend the night in the hospital and then bring me back home on Sunday with my next day pass. We packed up and headed back to the Maine Med. We ordered pizza and had it delivered. Bed time was rough. Nolan on a cot and Crystal and Paige on a pull out couch in my room. Crystal was a "bit" sore from the 10K she had run earlier in the day and was now sharing a cot with Paige the bed hog.

Sunday morning when my nurse came in, I asked when I would be able to get my day pass. She said she would check. She came back in later with bad news.  My counts had dropped overnight and I was now neutropenic. This means my immune system had pretty much crashed out. This is what chemo is supposed to do. We just did not want it to do it this weekend. So, I was not able to get released on Sunday.

We had a great day Saturday though. It was nice to be with Crystal and the kids outside of the Maine Med.

Also, congrats to a couple of close friends of ours, Jen and Mollie, who biked 50 miles in the Dempsey Challenge on Sunday.  Amazing accomplishment!

Good News!!

The doctor is giving me a day pass for Saturday and Sunday. I will be able to go home from 8am to 8pm. Will be able to go to Nolan's football game and then spend time with the family after. Can't tell you how excited I am.

Chemo is Done! Just Radiation Now...

So I finished up my last day of chemo yesterday.  Even though the actual chemo does not effect me until several days after, it just feels better to know that it is done.  The only thing left now is to wait for my blood counts to drop and then rebound (may take several weeks) and 8 more rounds (days) of radiation.

They came in this morning at 6:30 AM to let me know they were going to take me down for radiation treatment.  A transporter (person who pushes the wheelchair), would be here in 10 minutes.  Right after that, my doctor comes in to check me out.  Rash, vision etc..  Checked out OK I guess.  Now, I am down to 5 minutes before the transporter arrives.  So I get out of bed, head into the bathroom to "ready myself."  I emerge from the bathroom in under 5 minutes and there is now a wheel chair in my room, a transporter, a CNA to take my vitals and my nurse to draw blood.  Keep in mind, I was sound asleep 10 minutes earlier.

I get vitals done, blood drawn and I am off.  My transporter is all of 90 lbs trying to push me in this over sized wheelchair with one hand while using the other hand to navigate my IV pole.  She is having some trouble to say the least.  As you leave my floor to approach the elevators, there is a slight downward slope of the floor.  I knew this was going to be eventful.  We get halfway down the ramp and she starts to loose control of the situation.  I see my IV pole start to go past me.  I quickly reach out to grab that.  You see, I am attached to to the other end of that IV.  By me grabbing the IV pole,  she is able to use both hands gain control of the wheelchair.  When we got to the end of the ramp, I made it pretty clear I would take care of navigating the IV pole.  She seemed relieved!

So we get down to radiology at 6:50.  No one is there.  They do not open until 7:00.  They need two technicians to run the machine.  There was one technician there promptly at 7:00.  The second person did not show up until 7:15.  It appears she has a history of tardiness based on some of the comments and eye rolling that the technician that was there at 7:00 was making to me while we waited for her.  Today she had a great excuse of how she had ATM trouble at the gas station blah blah... 

So I had my radiation, got wheeled back to my room and was done with all my duties for the day at 7:40AM.  No side effects from the radiation.  I have not seen any of my brain leaking out of my ear or anything on my pillow.  (I do check).  Vision is at about 80% and skin rash is pretty much gone.  Walked 2 miles today.

Quick Update

So I just finished my fourth dose of chemo.  One more to go tomorrow.  Feel fine.  I had my second does of brain radiation today.  It only lasts about 5 minutes.  It takes about 20 minutes to get all setup though.  They do not want my head to move, so the first time I had treatment, they made a mask that goes over my face and bolts to the table.  I asked the technicians if they would take a pic.  They think I am a little weird in here. 

Even after only 2 doses of radiation, I am seeing an improvement in my double vision.  This is a good thing! 

Crystal brought the kids in for dinner last night.  It was great to see them.  Been over a week. 

Thank you for the care packages and cookies brought in this week.  Last time I lost 10lbs being in here, this time I am approaching gaining 10 lbs!



Adjusting to Hospital Life and Treatment Update

On Friday afternoon, my doctor came in to give give me an update on my treatment plan.  The plan was full body chemo, brain radiation and spinal chemo. She has been working with the leukemia specialist at Dana Farber because my case is so unique.  You see, my bone marrow shows no sign of leukemia, my MRI and CAT scan show no sign.  But I do I have a rash on several parts of my body that has been biopsied and is positive for leukemia.  My spinal fluid is also positive and I still have double vision.

The new plan is 5 days of chemo (to treat the rash) and 10 days of brain radiation (to treat the vision issue and avert any additional brain issues) to run concurrently.  The chemo consists of 1 dose of a bright blue chemo that runs 10 minutes and another chemo product that runs for 1 hour.  Much better than the 22 hours a day of chemo I was on before.  This new plan also means no spinal chemo which is great.  I am not into the needle going into my spine at all!   I just had my second dose of chemo today and will start radiation on Monday.  So far no side effects.  In order to get my chemo going, they had to give me an IV line.  You would think by now I would be getting better with needles.  I think I am getting worse.  When the nurse says "I have heard of being wimpy, but you are something else!" you just accept the fact that you are wimpy.

So after my 5 days of chemo, my counts will drop again.  I had mentioned that I may be able to do all this as an outpatient.  Not the case with this new plan.  After my counts drop,   I will need to play the game of waiting for my counts to come up.  Hopefully will not be the 30 days it was last time.  So all and all, we are happy with this plan.  Last week we were not so positive.  We are doing much better now.  Side effects do not look to be that bad, and should not push transplant back that much.

I am bummed about being back in the hospital, but I am now a professional patient so that makes it a little better.  I am walking 1 1/2 to 2 miles a day to try to stay strong for the upcoming bone marrow transplant.  All the nurses know I am a wimp, so they are extra nice to me.  I know the best time to order dinner so it does not take 1 1/2 hours to have it delivered. I know you have to run the hot water for 10 minutes before it gets hot. I know that when the lab (or bloodsuckers as I refer to them) come in at 5:30 AM to take blood, they will sometimes come back if you pretend you are sleeping (fake snoring increases the likelihood of them coming back later in the morning).

As I walk daily around this floor (the cancer floor) I realize how lucky I am.  As bad as my situation may seem, I am in a much better situation than most of the people up here.  Many of them are much older and do not tolerate the chemo nearly as well as I have.  It is an eye opener as to what a terrible disease that cancer is.  I came across a t-shirt the other other day with the following slogan written in bold face on the front: "CANCER, where the F!#K is the CURE?"  I edited it here and would never wear a slogan like that in public, but seriously, where is the cure!!???  Are our best people working on it?  Do we spend enough $ on it?  Probably not if we are having celebrities put on fund raisers to raise money for cancer.  When was the last time celebrities put on fund raisers for the military?  Enough of that..  I am not some controversial activist, just some random thoughts... 

Here is the new room: