Am I a Cancer Survivor Yet???

When I was diagnosed in August of 2010 with Leukemia, Crystal and I were shocked to say the least.  Our whole world was slapped in the face and kicked in the ass.  It was an extremely difficult time.

I immediately went on high dose chemo and was in the hospital for over a month.  At the end of the month, we were told the leukemia was wiped out but could come back.  I was released and after 1 week, I had double vision and a rash.  The leukemia was back and now attacking my central nervous system - ya know, my brain and stuff... 

Another round of high dose chemo with several rounds injected directly into my spine so the drugs could make it to my brain. OUCH.  Also, brain radiation.  After almost another month in the hospital, I was sent home being told the leukemia was gone.  That was October 2010.

Since that time, I had a third round of high dose chemo,  full body radiation (I should just go help out at the nuclear plant in Japan, the damage is already done to my body) a bone marrow transplant and gallbladder surgery.  I have not been checked to see if the leukemia is still in remission.  They closely monitor my blood chemistry.  If something is off that may be an indication of leukemic activity and they will do further testing.

It has been six months since anyone has told me I have leukemia.  If you read about my form of leukemia, AML M5 with CNS involvement, on the Internet, I should not be in nearly as good of shape as I am now.  I did not find one successful outcome with my type of leukemia.  Not one.  Looks like I may be the first successful outcome.  Maybe they will feature me in the New England Journal of Medicine. :)  I do know that I still get extremely tired each day.  A mile on the treadmill feels like a 10K.  The doctors say that my endurance will improve but will not be what it was pre-leukemia.  As far as I know though, my new immune system is working like a champ.  It is seeing those leukemic cells in my body and is destroying them.  I do feel better everyday.  My taste buds have returned and I am gaining some needed weight back.  I am hoping to return to work soon.  I have not worked since August.  That being said, I still lay in bed at night and wonder though, is the worst behind us??  I certainly hope so!

Germs and Public Spaces

Me and Nolan.  I am starting to see a little hair growth.

So, now that day 100 has come and gone, I am able to go into public places.  The theory for the first 100 days was my immune system was too weak to visit public areas.  The only public place I went was for check ups in Boston at Dana Farber.  On those days, I wore gloves and a mask into the clinic.  It makes it pretty easy to see my fellow bone marrow transplant patients.  We all have masks and are skinny.  We are bundled up because we are always cold.  Whenever I put on the mask, I think of the Bob Marley (local comedian)  routine where he is talking about his father going through the Wok Inn drive through.  Employee says, "Why you wear mask???"  Bob's fathers reply "Love the food, hate the SARS."  It is a bit dated, but still funny.

I am now able to go into semi public areas without a mask.  In the last couple of weeks, I have been able to visit the Dixon's and my parents.  I have been able to goto Nolan's school and meet his teacher for the first time.  I have been able to pickup Paige at daycare.  I have gone into the office to take care of a couple issues.  I have gone to the grocery store, convenience store, Reynolds Sportcenter and Rite Aid.  It has been amazing!!  It is crazy how the little things make such an impact!

Eating, Training and Project Management

The last couple of weeks have been great.  Food has begun to taste good again, I am gaining some much needed weight back and as a result, my energy level has increased.  All the parts finally came in for our treadmill and I have begun putting in some time on it.  It feels good to actually break a sweat again.

Since I am still not back to work, I still have a bunch of free time.  I am going to do some online training.  I am going to work towards getting my project management certification.  As an IT Manager, can anyone recommend which project management certification would be most beneficial?  I am leaning toward CompTIA + Project.

Crystal signed up for the Tri for a Cure again this year.  There is a link to the right to make a donation toward the cause.  This year they need to raise $350.

Also, Crystal and I wanted to say congratulations to Shana and Chris.  We are so happy for you!

Day 100

So, today is day 103 post transplant. This weekend, I was able to eat carry-out pizza for the first time since transplant. I asked Crystal to pick up Pizza Hut, but she ended up getting a pizza from Lowes. It was OK. I am not crazy about their sauce.

Over the past week, food has begun to taste better to me. I can eat almost anything I could before the transplant. It is such a great feeling. I am even putting some weight back on.

We finally got our treadmill put together (almost). We purchased a treadmill for me to build my strength back up and get some exercise. It came in with about 10 broken pieces. We called the manufacturer and they shipped out the broken pieces. They said once the parts come in, they would send someone to come out and put the treadmill together for us. So, we called when the parts came in. We then were told the technician would call us. After a week, no call. We called back and finally get a hold of the installer. He says he will be here in 2 weeks to install. So he comes out in 2 weeks to install. He makes it clear he is not here to setup the machine as the manufacturer had told us, only replace all the broken pieces. Arghhh. I ended up setting up the machine. Come to find out, we are still missing pieces. We ordered the thing at the end of December. Do not order direct from Proform. They suck!!!!

The sheild

Nolan's pink cake.

One more quick story.  A couple of weeks ago, I had to make a cake for Nolan’s Cub Scout awards banquet.  I was told it had to be a Viking theme.  He had just made a round red Viking shield with a snake on it.  I thought that would be perfect.  Well, come find out, it is almost impossible to make red frosting.  I used almost a full thing of food coloring, and the frosting still came out pink.  We later found out it was a cake competition.  Poor Nolan had to walk into the Den meeting with a pink cake with what looked like a white turd on top.  Poor kid…

Day 100 Approaching

So today is day 95 post transplant. Day 100 is a pretty big milestone the doctors say. Once I pass day 100, I am out of the woods as far as being effected by acute (possibly fatal) Graft vs. Host disease. Now over the next months, I need to look out for chronic Graft vs. Host. Typically chronic is not fatal and treatable with meds. Could effect my skin, my eyes, intestines etc.


According to the doctors, Right now I am doing great. I feel great aside from the occasional lack of energy. I am anxious to get back to work! The days are getting pretty long and boring. Here is my typical day:

• Get up at 6:30AM to help get the kids ready.
• Bring Nolan to his grandparents at 7:00AM to get onto the bus.
• Return home and have breakfast. Typically a raspberry toaster strudel.
• Take pills.
• Watch Judge Judy, Judge Shapiro, and Judge Joe Brown.
• Take pills.
• Watch various cooking shows while in and out of semi-conscious state on the couch.
• Awake with hunger pains.
• Make a shake from vanilla ice cream, peanut butter cups, protein powder and sugar and have that for lunch.
• Cover up on couch with my heating blanket because I am now freezing from the ice cream shake.
• Drift off to sleep again with the heating blanket keeping me nice and cozy.
• Awake and realize Crystal will be home soon.
• Unload and load dishwasher.
• Make bed.
• Fold laundry – hope it is only towels in the dryer to fold. Much easier than Nolan and Paige’s in-side-out laundry that comes out of the dryer.
• Fold and organize blankets on couch to make it appear they were not used all day.
• Go pickup Nolan from Grandparents. 4:00PM 

So, as you can see, I have a pretty action packed day. I have a pretty eventful week this week though. Today, I need to submit some medical reimbursement paperwork, on Wednesday; I will be bringing old clothes to the Goodwill drop off at the dump. (Dump closed Mon and Tues). Thursday, I will need to let a technician into the house to work on our treadmill.

I will say it again, I am anxious to return to work in some capacity. The doctors are saying that by April, I should be able to return in some fashion. I am glad February is a short month!!

 

 

 

Day 74 Update - How Time Flies

Just wanted to drop a line to everyone to let you know what I have been up to. Well today is day 74 and I am feeling great. I just had a checkup in Boston yesterday and got good marks. They have change my checkups in Boston from weekly to evey two weeks. My blood counts are where they should be and I am showing no signs of GVHD. (graft vs host). My eyebrows, lashes and facial hair are returning. Crystal is making fun of me because they are coming in so thick. My instructions today from her where to update your blog and shave that damn thing off (my mustache).

0 Degrees.  Fool we saw on bike in Boston

Yesterday, we went and visited my parents. It was the first time I had been to their house since I went to Boston. I am not supposed to visit other people’s houses due to risk of me catching something. Crystal and I decided that we could make an exception to go to my parents. No one has been sick in their house lately and if you know my Mom, you know how spotless her house is! It was good to get out of the house and see them.

Work also extended my Medical Leave until April. This is great news on many levels. Hopefully by April I will be able to ease my way back into the real world and actually begin to interact with people again.

Only 1% of the old Chad is still kicking...

A couple of weeks ago, I had a test done that tests my immune system to see how much of my immune system is my old defective immune system vs. my new donor’s immune system. Normally at this point, the doctors want to see at least 85% to 90% of the patients immune system as the donor's. Mine tests out at 99% donor. This is great news. This means the transplant is taking and setting up shop in my super sexy, boney, 150 lb elderly looking body.


We also found out that we can now stretch out our check-up appointments to every 2 weeks. This is great news. We will now only need to go to Boston twice a month vs. every week.

Even though my counts look great, I continue to struggle with eating. I think the worst of that is behind us. Certain food tastes better at times. I am having about 2 milkshakes a day to get some calories in. If they didn’t already have enough calories, Crystal bought the calorie packs that are nothing more than 330 calories. She had to buy them online.

In an effort to start to regain some muscle, I decided to setup my bike trainer in the basement.  Only 2/3's of our basement has been cleaned well enough for me to inhabit.  My bike was in the the furnace room.  This is a room that is strictly off limits due to dust and grime.  But, I wanted my bike...  so I held my breath, ran into the furnace room, dug to get to my bike (covered with Christmas paper filled trash bags awaiting their trip to the dump) and also grabbed my biking shoes.  By the time I was setup, I was already winded.   I ended up getting a 10 minute ride in.  Felt like 20 miles.

I still have no hair.  My eyebrows are starting to come back along with some sort of mutant mustache.

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!