Wednesday, October 26, 2011

Disease Update!!

Still getting stabbed all the time, if any of you were wondering about that.

- My blood came back positive for Pseudomonas.
- This is the bug that put me in the ICU the second time and really beat up my left lung.
- The reason this bugger is so bad is that it is a bacteria that is very hard to treat.
- It is hard to treat because it is naturally antibiotic resistant.
- They are being very careful and aggressive making sure that they get rid of this before I leave the hospital, so the length of the stay is unknown.
- I am officially on isolation...oh well.

Thank you everyone for the well wishes and prayers! Hopefully we can get rid of this bug and get to transplant soon!

Lets go Penguins!

Tuesday, October 25, 2011

Needles Needles Everywhere!

I think they caught the bacteria sooner than last time. Thats really important with this bacteria. I feel pretty good, however, they had to pull out my picc line (the little dangle dohickey's that hang out of my arm) so now I get stuck about 8 times a day. Bummer, so my first stick comes last night as they are etting blood for cultures and labs. I had a guy kind of looked like my good friend Danny (D-Rod), but 6 feet tall with a perfectly groomed Cleveland Brown mustache. It was awesome, I was worried, but he did it so well I didn't even bleed after...he says "My goal is to stick so you dont even feel the needle." What a guy, I want him back, I say...he only works nights.....Dang it all, I have to get stuck every morning. What a motto for a guy who has to stick people with needles all day long. Everyone must love him. Well, they do this all the time, so they all have to be pretty good at it. So this morning, at 4:30am, I am half asleep, ok, not half asleep, all asleep. An elderly lady (70) comes in, turns on the light and says I have to draw your blood for labs. I am not entirely sure whats happening...have I seen the light??? She is older, I think to myself, she must have been doing this for a long time. I throw a pillow over my face to hide from the light, she grabs my hand and jams the needle in. She says, "I think all needles pretty much feel the same." Whoa lady, I think your hitting bone there!

Jeez, where is the first guy. Anyway, that is the story of the day.....all is well so far. I have gotten two units of blood, 4 bags of antibiotic, and had an ok taco salad for lunch. Thanks for the skyping last night those of you know who you are....I always try to conceal names in case someone wishes to stay unidentified (Like old lady Needle-face!).

Hope everyone's day started off better than mine and this blog finds you happy and healthy!


ps: I was able to post a video on facebook yesterday, in case anyone was interested.

Monday, October 24, 2011

Same Day ... Two Blogs ... Whoa

Well, here I sit at Froedtert again....back with a bacterial infection. Not the way I wanted to spend the week, but its better than dying of cancer! They think that the infection is similar to an infection I have had before. The docs feel they caught it early and that with some antibiotics, they will be able to take care of thing. However, with this being a blood bacteria, they will have to stick me (thats the technical term for poke me with needles to get blood draws and cultures and blood counts and stuff). No biggie, I just had a guy from the IV team draw cultures and he did a great job! I guess if you do it all day everyday, they have to get better at doing it right. The horrors of donating blood way back in high school rear their ugly heads!! Don't think anyone is going to be wanting my blood anytime soon. I can see the conversation now ...

Hey guy, need some blood, its chock full of platelets and neutrophils and leukemia and red blood cells.
GUY: Uhhh, what was that third thing you said?

ALRIGHT---Big try....can I get a video to work on my blog....we shall see.

OK, It does not work for some reason, maybe someday I'll get the drive to figure that out, my next attempt will be to put the blog video on Facebook.

Over the Weekend

Man, those darn Badgers! Can't believe they lost, and can't believe they lost on that stinkin' hail mary pass! Unbelievable, now I have to sit around and watch the dumb replay over and over again.

Packers beat the Vikings and that is always good..."Records go out the window for that game, just do not like losing to the Vikings, then you have to hear about it all week." Danny Mac ... I totally agree.

The Homestead Hockey Trivia night went well, they were able to include me, via Skype, in some of the festivities. Thanks to everyone who helped with that! Tonight, there is a light the lantern event, should be really cool.

In Cancer news, I also had a fever on Sunday and had a brief trip to the ER in Froedtert. All things turned out ok. I am now in the Grafton Hospital getting some IV therapy...meaning, I need blood and platelets. I think that the blood and platelets will really help, as I have been a little run down the last 2 days. Again, Friday is the important day with a lung test and a CT scan....those both need to go well for us to move forward. PRAY HOPE

Hope this finds everyone healthy and happy!

Friday, October 21, 2011

Tale of the Waiting Rooms

Not sure what it was, but I am just struggling to think of a good title for this post. A date seems so boring. Oh well, this is the first update for quite a while. AND, so far, there is nothing really to report. The steroids I am on for my lung inflammation has been making me hungry all the time. I feel like even when I am bloated and full, that I am hungry. I have been sore, maybe because of the weather...which turned pretty cold and windy, pretty darn fast. I have had a bit of a cough and runny nose, which I think is nothing...probably mostly due to my lack of immune system. I have not had any fevers and that has been great. I am exactly a week off from my last chemo dose and right in the middle of when my counts are the lowest and I am at the greatest risk for infection, illness, fevers, inflammation, etc. Molly and I are hoping and praying we can get by this time and make it to my pulmonary function test, possibly next week.
So now, here I sit in my HHS Hockey hat in waiting room number 2 of the day. HEY! There we go, the name to this weeks blog! Tale of the Waiting Rooms. I'll try and get pictures of all my waiting rooms today and throw them on the I am stretching for something interesting.
I tried to put the waiting rooms in order in which they were sat in. However, here is the news, enough with the waiting rooms. I just had a chance to talk with my transplant doctor and the news was pretty good. The end of next week is the Pulmonary Function Test and CT scan. I will have those before I meet with my doctor, and based on the results of those two tests, we will see what the transplant schedule looks like. The soreness that I have been experiencing is most likely from the Neulasta shot I had to take. Neulasta works by helping the body make more neutrophils. Neutrophils are a type of white blood cell, that help the cell to kill and digest microorganisms it has engulfed. WOW is that a mouthful, bet you never thought you'd learn so much reading Navarre's dumb ole' blog. I am now waiting to get platelets. Again, this is all because the chemotherapy that I was on killed all the immune fighting cells and platelets. The platelets really help with preventing bleeding...normal platelet counts are between 150,000 and 350,000...and currently, mine are in the 14,000 it'll be good to get these platelets.

Well, I think that is the total update for today's activities. Some after-thoughts...

Good luck to the HHS hockey fundraiser TRIVIA NIGHT! Wish I could be there to play, but I am hoping that the team holds it together without Molly and I. Molly did get the GTL question from Jersey Shore wrong last year, which was a big bummer, I am sure she was ready for the Kardashian question that would come up this year. I am sure that Sukawaty, OB, and Millard can hold things together this year!

Good run for the Brewers, too bad they had to lose to the, I hate those Cardinals!!! Pitching just blew up in the post season and Gallardo was the only one who could pitch, although Wolf had a great start. I think Fielder is gone to LAA, but there may be some sliver or a grain of sand of hope that he stays? Don't think so, and I can't blame him....25-30 million dollars a year is pretty good.

The Pittsburgh Penguins have gotten off to a great start when you consider that they have had their best players injured for most or all of the start of the season. When Malkin, Crosby, Letang, and Orpik are all back for good, with Neal, Staal, Fluery, and the rest playing well, look out Atlantic East Division.

Packers go for their 7th estraight win on Sunday against the hated Vikings. My guess, 34-14 in favor of the Packers. Poor Adrian Peterson just doesn't have much to support him and Packer fans are going to get the first taste of the future of the Vikings....Christian Ponder. We'll see, I do not think he is their man. Wasn't ever a fan of him at FSU. I suppose if you have AP in the backfield, it can't be all bad.

Finally, the Wisconsin Badgers go into East Lansing to battle the Spartans. This is a big game for the Badgers and not as much for the Spartans. Because they are in separate divisions, both teams can still make the BIG 10 championship with a loss, however, with the Badgers needing this win for the BCS standings and still looking at being unbeaten, they have a lot to play for. The Spartans, fresh off a big win at home against Michigan also needs to win the following week against Nebraska to really ensure a BIG 10 championship game. Do they invest all their efforts knowing the following week may be more important? Add to that, one of the big d-men for Sparty is suspended...and it looks good for the Badgers at Michigan State.

And a quick add on with a good story from the Wisconsin Badgers Hockey team.

Thanks! I hope this finds everyone healthy and happy. Have a great weekend!!! Tony

Tuesday, October 11, 2011

What is the Scoop?

So, here is the scoop.

Chemotherapy started yesterday, it is a new concoction the doctors hope will not have such a negative impact on my lungs. It also turns the whites of my eyes blue and my urine green, just in case you wanted to know that :) When this week (5 day round) of chemotherapy is done, my counts will once again drop and I will be on house arrest. Barring any setbacks, the doctors will once again re-evaluate my lungs to see how things are. I will have to do another Pulmonary Function Test...the reason for that is, the last test improved greatly, but there may have been some improvement because there was so much bleeding in my lungs from the inflammation. When there is that much blood, there is more oxygen, so, the doctors want to make sure the improvements were not just a result of the bleeding. It will be my job over the coming weeks to keep up my exercise, as safe as possible, so that my lungs are good when I retake this test. I will also have to have another bone marrow biopsy. They are not sure when that will be, but sometime late October, early November to make sure that the disease has stayed away. When all of those things check out, we will once again, I know it has been said before, have a potential date for the transplant. November sometime.

The exercise has been going well, I have borrowed some weights from some friends Matt and Terry. Hockey dad Mark and his son Evan moved the exercise bike upstairs for me to use once I get home, and that will be a big help in keeping me busy and staying indoors (away from illness). I have been trying to work hard in the hospital, taken 3 good walks that have included climbing flights of stairs. I think in the past 2 days I have gone up and down 33 flights, so that is good for my legs. Some of the medication I am on is supposed to be bad for my arm and leg muscles. So, I'll keep doing that for my muscles and lungs.

Shout out to all of the Wisconsin fans this next few weeks!!! Feel bad for my buddy Brian over in Scotland who is missing some of the fun Sconnie sports, but I know the dedicated fan that he is, he is finding ways to bridge the gap. I think it makes it a little better that the Vikings are struggling. The Brewers took an absolute whooping at the hands of the Cardinals in the last NLCS game at Miller Park, hopefully not a sign of things to come. The Penguins have gotten off to a good start and hopefully Sidney Crosby comes back soon. Still wearing his no hit helmet, but maybe contact in practices this week. That is a GREAT sign.

Well, hope this finds everyone and their families in good health and happy

Monday, October 10, 2011

Chemo today

I start Chemotherapy today...a new drug. It is blue!! Go Brewers!!!

Sunday, October 9, 2011


I have another round of chemotherapy starting on Monday...but come on. Does it get any better than this?? It may?

Brewers play today at 3:00 in the 1st game of the National League Championship Series in a home series against the Dirty Cardinals from St. Louis. The Packers have a night game in Atlanta, should be a fun game with lots of scoring. Not to mention, the NHL season has finally begun and the Pittsburgh Penguins are 2-0-0-0 without Sid the Kid, who is close to coming back from the concussions.

On the Cancer front: Like I said, I have another round of chemotherapy, the past problems from chemo have happened, the doctors believe, because of the Cytarabine, a chemo drug. It is rare, but I have gotten Cytarabine poisoning. So, they will do this round of chemo, and then re-evaluate my lungs. Hopefully, they will be in good shape and I can once again be put on the calendar for my transplant. It has been hard waiting, but I feel like maybe we have things figured out now and we are ready to move on!

Wanted to also give another thank you to the Homestead Hockey Family. More parents and players have come to the house to help with yard work, etc. Everyone who has helped my family through this tough time has been and is amazing! The Mequon-Theinsville Community, Homestead High School, Soccer and Hockey programs, and everyone who has helped with fundraisers, etc, is amazing. We could not have gotten to this point in treatment without all of your help. Everyone is truly helping me fight this disease.

Thanks and Love Everyone!

Sunday, October 2, 2011

Packer Sunday the 2nd of October

This is my third Packer Sunday in the Hospital. It really isn't too bad, the nurses are having a party for the Bone Marrow and 4th Floor NT patients. The Pack are 3-0, so it can't be all that bad. They play the Broncos today, so hopefully that means they can go for the 4-0 start. Hopefully I can go home either today or tomorrow. The Badgers spanked the Cornhuskers last night at Camp Randall. It was a heck of a game. Russell Wilson looked great, Monte Ball ran hard, and the O and D Line really showed their stuff. The Penguins have had a good run this preseason, and it looks like Crosby may be back this year. That is good for everyone who likes the NHL. Finally, The Brewers took game one of the NLDS yesterday with game two today and Greinke pitching at home, looks like the Brew is set up pretty well to take 2 games. Adeline and Molly are doing well, work has been going well for Molly.

What did one snowman say to the other snowman....smells like carrots.