Day -4 ~ Be prepared, this is a long one!

We have officially started the transplant process!!! FINALLY!!! We are on transplant time, so today is day negative 4. Tomorrow is day negative 3, and so on until transplant on day zero. Day zero starts my 100 days. The 100 days is the most important and most critical time. My immune system is at its worst, the new cells have to graft, and my counts have to return. This is when I am at my most vulnerable to infection and susceptible to graft versus host disease. Graft-versus-host disease (GVHD) is a complication that can occur after a stem cell or bone marrow transplant in which the newly transplanted material attacks the transplant recipient's body. Due to the issues with my lungs I am at a higher risk for complications. After 100 days, the risk for complications becomes much much lower.

It is hard to believe, but 8 months ago I was 7 days into a coma, which was supposed to last 5 days, and lasted 24 days. I woke up unable to move or talk and for some reason thought that I was on a boat in Florida.

7 months ago today I was awake with a hole in my throat from my tracheostomy, I was still unable to walk, I had one of four chest tubes left and was monitored constantly. I missed all of March Madness, although in one of my pools I did have UConn winning (did not find out they won till months later, does someone have money for me :) This was also the day that our oncologist told us we were a good client for bone marrow transplant...Molly puts out the word that people should get on the bone marrow registry.

A short month later, 6 months ago, I was back in the hospital with very bad pneumonia and pseudomonas. Molly wrote on caring bridge, "Today was another very rough day. Tony has been very delirious and, on top of that, has had great difficulty breathing. The chest x-ray this morning showed that there is more consolidation in the lungs and, therefore, is making it much more difficult to breathe. Tony was forced to put on the bi-pap machine early this morning and they were going to assess where he was at later in the day to determine whether or not he would need to be bronched and have a breathing tube put in. Tony was doing ok with the bi-pap machine all day and, therefore, has not been intubated at this point." The 28th was Futbol vs. Football, which demonstrated again how absolutely amazing the Homestead community is! By the 30th of May I was moved out of the ICU at St. Lukes and back to the Oncology floor.

By June 20th, I was again in the hospital. This time my lungs were so bad they needed to do an invasive surgery called a thoracotomy. Molly's uncle Kirk wrote the basics on Caring Bridge, "The initial plan was to go between two ribs and insert a tube to drain off the infection. However, the material there was too thick, tough, and adherent to drain out. They called this material the "rind," and it was up to nearly an inch thick in some areas. In order to get at it, they had to do a thoracotomy, which is the surgical procedure whereby the ribs are spread apart and the surgeon can reach inside the chest cavity. Using this technique, the surgeon was able to scrape or peel the rind out, freeing up the lung and getting rid of much of the infected material." Finally, by June 29th, I was on my way home...again.

4 months ago, on July 27th, I was on my way back to the hospital with fevers. After a round of antibiotics and tests, I was on my way home by the 29th. July 30th was the day my family and friends had a fundraiser for me at Happy Hollow along with the three on three hockey tournament at Hobbs. Not only am I blessed to have an amazing family, but incredible friends that to continue to support me. The Memorial Old Abe family turned out, Friends from Mequon made the trip, my family members were all over! INCREDIBLE PEOPLE!

3 months, I was excited for my transplant to happen, when on August 23, we received some very unfortunate news. We were called down to Froedtert and had a meeting with another bone marrow transplant doctor. Due to my poor results on his pulmonary function test, we were unable to move forward with transplant at that time. The risk of death due to transplant with my lungs the way they were was too high. By August 25th I was back in the hospital and preparing for another VATS procedure. After getting the chest tube out, I was sent home on the 30th of August.

September was a bummer of a month, after two more stays in the hospital and fevers of over 102 degrees, I was scheduled for another VATS procedure. Which included two more chest tubes. This brought my total number of chest tubes to 12. Not sure if thats a record or not, its certainly a Navarre family record as far as I know. My grandma is the genealogist in the family, I'll check it with her. I also had 4 major surgeries (Trache, Thorocotomy, 2 VATS). My comment to the doctor performing the 2nd VATS procedure was at least I'll have VATS scars on both sides, makes it more balanced. Hard to believe that was only 2 months ago.

October brought on another round of chemotherapy, bringing that total to five from March to October. In yet another display of how wonderful the support I have is, Operation Wish Lantern was held on the 24th, unfortunately the same day that I was re-admitted to the hospital for fevers. It was discovered that I was allergic to the chemo drugs they had given me the first four times, and that the latest round went better. However, I did get pseudomonas again, which resulted in more antibiotics.

November marks the first full month I have been "at home" since February 2011. I think it fitting that I check in for inpatient on November 30th. Don't want to ruin the streak! I have had, surgeries, breathing tubes, Pulmonary tests, heart tests, stress tests, bone marrow biopsys, blood cultures, and chemotherapy and on the 2nd of December, a new first, I will get a bone marrow transplant.

Questions/Thoughts that I ask myself on a daily basis:
Why did I get cancer?
Why are my friends so incredible?
-Phone calls, gifts, wearing navarre17 tees in marathons, fundraisers: walks, runs, bar crawls, hockey games, soccer games, internet sites, lanterns, trivia night, support with my family
Are all school communities as incredible as Homestead?
Does every staff care as much as they have?
-Meals, books, cards, support, work on the house, gifts, texts...I love the HHS Staff (Administrators included :)
Could my players and students be this amazing?
How did I end up with such caring players?
-And people think hockey players are just tough guys but they do a heck of a job on yard work:)
-My favorite book whenever I bummed "Navarre on 3"
-My soccer blanket
-The teams that have worn Navarre17 shirts for their seasons
Could I have a better family?
-From Rhode Island to California and everywhere in between they have been there the whole time, doing everything from taking care of Adeline, taking me to my doctors appointments, and staying in touch.
Why does Molly stay?
-On TV, and I have had time to watch A LOT, people are getting divorced and leaving for every reason under the sun. Through all of this, she has been a ROCK. I have said it repeatedly, and sorry for stealing the quote...I out-kicked the coverage. I think she stays cause I'm dead sexy, but who knows for sure (You know...hairless, balding anyway, 129 pounds to 202 in 2 months, gap tooth...who doesn't want that!)
Is it a blessing that Adeline is the age she is now?
There is no 'thank you' big enough for everyone.

Cancer has impacted me like nothing I could have ever imagined, and I am not finished with the battle yet. I am going to attempt to blog most every day from now on to keep track of the transplant process. From getting a phone call in my classroom on March 16th and letting my principal know to getting chemo today I have been blessed with amazing people. I can't wait to have a Fricken' sweet party, the 'I am finally done with this stupid cancer thing and can see all my friends again party!' Herbal T and nB' will play (hope that is ok Berger), there will be beverages and dancing. My AMAZING doctors, nurses, and therapists (PT, OT, SL, RT, etc) will come (no excuses Jason). My family and friends will all come and it will be awesome. Maybe even some of those players can make an appearance.

Thank you everyone from the bottom of my heart!
Tony