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.