Saturday, December 31, 2011

My New Years Resolutions

This is a list of things that I am going to try to do, or things to avoid this coming 2012...

- A temperature consistently below 104 degrees
- 1 fewer coma
- 4 less surgeries
- 10 fewer chest tubes
- 200 fewer days in the hospital
- 600 fewer meals made by a hospital
- Start less than 1/2 of my conversations with the question regarding the consistency of my bowel movements
- 9 out of 10 Visits from friends and family will not involve gowns and rubber gloves (that still leaves 1 out of 10 that will still involve them :)
- At least 1 Herbal T and nB' concert in 2012
- One family vacation that does not take place in Milwaukee or involve the Residence Inn (although they have been great, highly recommend the Residence Inn - Glendale)
- Use a mask only 5% percent of the time when greeting someone...including Halloween
- Spend more time with family and friends
- Somewhat off from others new years resolutions, I am going to gain some weight in muscle rather than lose weight
- Get my lungs back in shape...somewhat, lets not get too excited here

Enjoy the New Year everyone...I know I am looking forward to 2012!
Tony

Thursday, December 29, 2011

Day + 26


Adeline has not slept great at the hometel, so nights seem a little longer than they really are. Molly got up with Adeline at 4:00am this morning, and being the wonderful person she is, she let me sleep. I was able to sleep until about 6:00am this morning before getting up and taking my morning meds (12 pills). After waiting an hour before having breakfast, I dozed for another 30 minutes. Molly, Adeline and I then left for Froedtert.
Froedtert wasn't too bad. They had to take a lot of blood, something like 10 viles for two different sets of tests, then they also took cultures from my PICC line. After the tests, I headed over to the LIFE Cancer Center and waited for my nurse practitioner to see me. Everything looked good, and my liver levels had gotten better or stayed the same. This is great news. They also checked my White blood cells and platelets....both of these were in the normal range! AWESOME.
Molly came and picked me up at Froedtert and we headed back to the hometel where I promptly fell asleep again. This time for about 3 hours. It seems to be fairly regular that I am exhausted during the day. I have to get better at exercising everyday and keeping my muscles up to snuff. I did do my shake weight today, however...yes you heard right, my shake weight! A present from my brother in law was the shake weight and a 6 minute DVD. It isn't easy...we'll see what kind of results it has. On the DVD is my personal trainer Christopher. He is buff and seems to sweat before the shake weight exercise has yet to begin, must have good metabolism. I am also going to walk a little more starting tomorrow, and stretch everyday. At some point, I want to start YOGA. I have heard good things from a number of people about feeling more relaxed, stretched out, and looser after a bone marrow transplant. So that is something I am going to pursue a little further down the road.

SPORTS SECTION- So, I have not been all that impressed with this years bowl games. Washington v. Baylor isn't bad, but no games have really caught my attention as of yet.
- Little worried about our Badgers against the Ducks. The Ducks are so darn fast and run so many plays. I hope our defense can make a few stops and our offense can keep up. It should be a fun game though.
- Sidney is out again with concussion symptoms...man, this may be a career ender, and he is so talented. Tragedy ... for me anyway.
- Pack looked better against the Bears on Sunday and have the Lions to finish off the season. Lets just get out of that game with no injuries. With the week off after because of the bye, the Packers may be in better form after a couple weeks of rest.
- No news on Braun.
- Basketball started..big whoop.

Hope everyone is doing well! I think it will be a good night as Adeline has not woken up yet :) Who knows, she may even sleep past 4:30am! Have a great night and better day tomorrow!
Tony

Tuesday, December 27, 2011

Closing in on the New Year

So far so good. Everyone needs to do the knock on wood, stay lucky, don't get sick dance. I have been feeling very good. No fevers, no GI issues, no rash and I have been eating well. Waiting at the hospital now, to hear how my blood tests have turned out and to see if I need any fluids.

I have gotten to hang out with Adeline a lot and that has been so much fun. Hopefully everyone has had a great Christmas. We had so much fun just hanging out. We got a lot of text messages, emails, phone calls, and fb messages wishing us a merry Christmas! Everyone has been so generous.

Take care and enjoy the few remaining days until New Years!

Sunday, December 25, 2011

GO PACK GO

Merry Christmas to everyone. I hope the last two days have been as good for you as they have been for me.

Feeling great, no fevers, or GI stuff, still some congestion...but everything feels good so far. Christmas went very well, Adeline got some fun presents, although she still likes to play with kleenex and remote controls more than anything else. Most of the presents Molly and I did before I went into the hospital, thinking that I would not be out before Christmas. We hope everyone had a great day. We were able to watch some Christmas movies (A Christmas Story, Home Alone), we had some great food given to us by our good friend Nancy, we watched Adie play, we played some games, and now we are enjoying the Packers Bears game. Fun to have some football to watch on Christmas.

Hope everyone is happy and healthy on this Dec. 25th!!
Tony Navarre

Friday, December 23, 2011

1st Morning Post


I am pretty sure this is the first post that I have written in the wee morning hours. Does anyone honestly use that word? Wee? That may have to be the word of the day Ruff! Wow, guess I am still tried.

I had a doctors appointment yesterday and things seem to continue on the "good" path. I had a blood draw early and then waited for a bit to talk to my transplant doc. At this point, my biggest issues are keeping the vitamins and minerals in my body. Many of the drugs I take use or flush a lot of potassium and magnesium out of my system, so it is very important that I get those along with some others. However (and when isn't there a however?), taking many of those supplements can have an impact on my stomach, liver, kidneys, etc. Right now, the main idea seems to be balance. Taking some medications to balance out the effects on the others, an so on.

KNOCK ON WOOD KNOCK ON WOOD...I am feeling as good as can be expected. Some headaches and some congestion, but I feel pretty darn good otherwise. I am extremely out of shape as well. My sister and I carried in bags and groceries the other day and the two trips and the stairs were about as much as I could handle. I know wearing the mask doesn't hep the oxygen intake, but the mask and staying healthy is far more important than risking anything at this point. So, I had to rest for a bit afterward and catch my breath...was it running away? HAHAHA stupid.

As far as the transplant goes, it is all about be careful and making sure to do the right things the next 2-4 months. I have to continue to wear a mask whenever I go out, or whenever I see someone. I believe that I have heard, "wash your hands" about a million times. It is the easiest way to prevent infections, so we have hand sanitizer and soap all over the place...but again, does it really matter? I mean, honestly, is not washing your hands worth your life? I THINK NOT! We seem to be mostly settled into the 'hometel' and Adeline is getting used to the idea.

I think that the Port Washington Navarre's are also ready for Christmas. A few days off to celebrate the good things that happened this year. Now, we all know the joke about 2011. But in reality, some things are positive about this year. A small reflection about this year.

Not many people have a life changing event that gives them the opportunity to understand the value of life better. Through-out this event, I have had the opportunity to see what people are truly made of. The chance to reconnect with old friends, or see the value in the friends that you have. I got the chance to see the generosity that people have. When does one get the chance to know if choices they made early in life were truly the right choices? You can look back say that you do or do not have regrets about decisions, but to have that validated rarely happens. To be able to change your life for the better because of an event...in other words, to look at the past and know what you want to do better moving forward.

I love my life! My family (ALL OVER and ALL AROUND) is incredible. My decision to move to the Milwaukee area and teach at Homestead was absolutely the best choice I have ever made (not that it was ever a question after I met Molly). I know, without a doubt, that I have the best and truest friends a person could hope for. When I make a New Years resolution, it will mean something. I will live a more generous life. That the doctors, nurses, and therapists I have met, need to know, they saved my life and I am eternally grateful to them, they should know that they are all in my prayers. That the saying, "Don't sweat the small stuff" needs to be more prevalent in my future life. Forgive and forget...it is not worth holding a grudge or burning bridges...let those things go even if others won't.

I know it may get redundant to hear...or rather to read, but I am so grateful to everyone that has supported our family in one way or another this past year. We made it to this point because of you all, I will celebrate Christmas with my family this year because of you. Hopefully, all the kindness you have shown us this year will be repaid to you in some way or another. Have a great Christmas....or if you are not a Christmas person, Holiday!

We love you all,
Tony, Mols, Adie

Wednesday, December 21, 2011

FREEDOM!!!!!


Ok, so its not quite that EPIC...but I am out of the hospital. My sister came and got me and we are all set up. Feels great to be out and in the hometel! Its still pretty rowdy, trying to get everything put together. We are getting settled and most of all, it is great to see Molly and Adeline. More to come tomorrow, but it was an exhausting day.

Have a great night!
Tony

Tuesday, December 20, 2011

Bust Out This Cracker Jack Box!!

So here is the great scoop...it sounds like I get out of the hospital tomorrow. Now, it is not a for sure thing, but its at about 90% right now. That means I head to a 'hometel' starting tomorrow.
Thoughts about this hospital stay, not the top ten list, but just a list of things that come to mind about being in the hospital for 22 days.

-How much I miss Adeline. It has been really hard not to physically see her. Skype is nice, but it can not give you a daddy hug.

-Any one of my great friends who have called, skyped, texted me during my stay. For some, it has been awesome getting to talk to you, for others, it has been nice to get back in touch.

-The BMT Unit is shaped like an oval, an they marked off how many laps is equivalent to a mile. That is 23 laps. I have completed, as of right now, 636 laps. That is 27.65 miles. I know in reality, it is not much to walk a mile a day, but from where I came from, it is awesome...SO LAY OFF!! You all know I hate running, let alone running in a circle, and worst of all walking in a circle, most of the time with an IV pole.

-Got through two books and started a third. Its always nice to catch up on the reading, isn't that what someone always says at the new year...catch up on reading? (I guess who really says that?)

-It is been hard to hear hockey news...but good. I try to get as much news from players, coaches, family members on all the relevant teams in my life. (Homestead Highlanders, Memorial Old Abes, Wisconsin Badgers, Youngstown Phantoms, Pittsburgh Penguins) As I write this, I am listening to the Old Abe game on the radio, thinking about HHS playing against and hopefully taking it to Fondy Springs. I am also the envy of the BMT wing thanks to the Wisconsin Badger signed hockey stick given to me for my birthday by my cousin Jefferson.

-I celebrated my 30th birthday in the hospital. It sounds sad, but it wasn't because I finally got the needed bone marrow transplant, and because of that, I will hopefully get to celebrate many many more birthdays. SO....this was the BEST birthday ever!

-Molly wearing out I-43. Between Green Bay, Mequon, Port Washington, and Froedtert...wow I don't know how many times I have said it, but she is incredible.

-I don't know that I have ever been a facebook detractor, but prior to all of this nonsense, I wasn't on too much. Facebook has been great to keep up communication and share my experience (much like this blog has). The games can be addicting (NHL superstars, Millionaire, 5th Grader) and that keeps me busy as well.

-How amazing my doctors and nurses are. When I arrived, they have made sure I was feeling good, healthy, getting better every step of the way. They explained what was going on and kept me informed on my counts and medications. Awesome! From St. Lukes to Froedtert, my respect and love for my caregivers is never ending...they have literally kept me alive.

-Braun??? Steroids??? Testosterone??? Disease??? What a weird story. I hope it works out for Brauny and the Brew Crew.

-All the people who step up to help my family. The outpouring and fundraisers from the beginning. We sent out a note we were looking for housing and were flooded with options, thoughts, and ideas! You all are amazing and generous people.

-I miss school. Yup, I said it, I miss school. All my 6th grade teachers can wake up after passing out now. Seriously, I think a few of my 6th grade teachers just hurt themselves.

-How could the Packers lose to the Chiefs. I mean really, long run, it doesn't mater for playoffs sake, and better they lose now than in the playoffs, but come on! It would have been pretty cool....but GO Playoffs and more than that GO Superbowl!

-I miss my dog. However, he is in great hands and loving his time with his new dogfriend Gypsy.

-A nurse said to me, won't it be nice to get your life back, essentially now, you can consider yourself cancer free. Wow! What a feeling to hear that after everything.

-Hospital food...enough said

I know there is much much more, but we'll save some for another day. (By we'll, I mean me and the mouse in my pocket..right Bill?)

Happy Holidays and in the great and fitting words (for our family at least) of my wonderful wife Molly..........

F U 2011....Bring on 2012!!!
Tony

Monday, December 19, 2011

Day +19

Things are going very well! My counts continue to go up and I am officially off all IV medications. A bummer is that my cultures came back with a fungal infection. The docs aren't worried about it, but the anti-fungal medication that is used to treat the particular fungal infection also interacts with the anti-rejection drugs I receive. (Mouth full) Basically, the medications need to be at very specific levels, so it may take a day or two to get the blood results back. The anti-rejection drug is also to prevent GVHD ... Graft-versus-host disease 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. At any rate, not a huge issue and hopefully one the docs already have under control.

Still some adjusting to the Packers losing. I'm not a Lions, Vikings, or Bears fan....I don't know what it feels like to lose very well. Ah well, what can you do, hopefully they can re-group, get healthy, and play better. Crosby is also back on the IR...uh. The Penguins need some good news on him, and soon. Hopefully, Braun gets some justice for the leaking of the information, he checks his prescriptions much better in the future, and that the Brew can do ok without him for possibly 50 games. HHS still looking good, hope they can take care of Fondy Springs and OshKosh before the conference games begin. Go get em' boys.

Hope everyone is doing well, week before the holidays. Get all the shopping done, travel well and safe.

Tony

Sunday, December 18, 2011

Yes

Oh...Da' Pack

13-1 uhhh How could they lose to the KC Chiefs. Unreal, they played so bad, but now, it is all focus on the Super Bowl, because it will all be for nothing if they can't take it all the way. All you haters can just relax now and let the Packers rest and recover from their injuries. They'll sew up home through-out. So bummed, I won't be able to watch Sportscenter tomorrow...it'll be all the Packers losing and Tebow losing...what a terrible show. Guess its Family Guy seasons and resting. In some positive news, I belive that I am going to make my Fantasy Football championship in one of my leagues...so today was not all bad. Even better is that it is the league that I have been part of for almost the longest amount of time. My UWEC league holds that title, but this one is a close second coming in at 9 years...although many of the teams have changed, Decker is still playing and Clark is also a mainstay.

On the cancer front, things are looking good. Still not positive on when I am getting out of the hospital, but it is a big step when they take you off all the IV medication. That happened today! I am feeling pretty good, walked over a mile today, and am now in a holding pattern until the docs think it is safe for me to head to the 'hometel.' Again, I can't take credit for the clever wording, but it just seems to fit so well. We are thinking that an executive stay hotel, furnished, is going to have to be a stating off point because getting something set up on almost no notice would be difficult. My counts doubled today, which is HUGE, and hopefully I will have another big gain in counts again tomorrow. Since the third day I have been in the hospital, I have kept track of the number of laps that I have done around the unit. The BMT unit also measured off how many laps equal a third of a mile, one mile, and two miles. I then added the number of laps I did the first to days that I was in the BMT and came up with 55o laps so far in 19 days. That is 23.91 miles I have done since I came to the BMT unit. A marathon is 26.22 miles, so my goal, is to have walked a marathon since coming to the BMT unit at Froedtert. I will get some more walking in tonight (to burn off some steam from the Freakin' Packers losing) and hopefully, by Tuesday, I will have reached my goal of 26.22 miles. For those of you who know me, running for runnings sake is not my thing. I want to be chasing something or be chased by something if I am going to run. I have always said I would never do a marathon...however, I think this is pretty darn accurate. It takes me 21 days to run a marathon. Again, for those who know me, that sounds about right.

Adeline and Molly are both doing well. I hope hope HOPE I get to see them BOTH for Christmas. Even if I am not in Port, it would be great to get out of here before Christmas. I now know why the sports radio 1250 guys put so much effort into the Toy Drive for Children's Hospital during Christmas...no one wants to spend Christmas in the hospital. So, hopefully, I can get out in the next five days.

Hope everyone is healthy, happy, and has a great holiday...travel safe.

Saturday, December 17, 2011

Day +14 December 17th


Turned 30 today! Wow, who knew 29 years old would be so danged hard, 30 is going to be a walk in the park! Thank you to everyone who has called, texted, skyped, FB messaged! I feel the love...http://www.youtube.com/watch?v=aF4CWCXirZ8. Happy birthday to my Mom as well!

Today has gone pretty well, walked a mile already, knee is a bit sore. Watched some college football, used the Kindle, had some non-hospital food...awesome. Molly was able to visit for most of the day. Hockey team skyped this morning after a nice win last night (both JV and V) and have another game this afternoon. Aside from the congestion, sinuses, I feel about as good as can be expected. Still don't have a day for discharge, but feeling good is the first step to that. Hope everyone else is doing well, GO PACK tomorrow against the Chiefs!

Tony

Friday, December 16, 2011

Time Travel to Day +13

Sorry folks! The truck I told you all about around Day +4 (Dec. 7) struck me on about Day +7 (Dec. 10) and lasted through about Day +12 (Dec. 15). I was incredibly sore, tired, and in pain Tuesday and Wednesday. For some reason my back flared up and I had headaches about as bad...I compare them to the headaches I had when I had my lumbar puncture....basically when they drained the fluid from my head and my brain shrunk. AWESOME!!! All you hockey people are thinking...I thought he seemed a little small brained. At any rate, my counts are returning and so is my health. Some of the nurses even said I should consider myself cancer free now that my counts are returning. Very cool thought to have! Not sure how much longer I will be in the hospital, but Molly and I are searching for living arrangements near Froedtert. We have a few leads and thank everyone for checking into things for us. It is very helpful. Hopefully, I will not be neglecting my blog duties any longer :) Good luck to HHS hockey tonight as well as Youngstown Phantoms. Get wins tonight boys!!

T

Monday, December 12, 2011

Day +9

Feeling pretty run down. Right in the middle of where I am supposed to be at worst. I don't really feel too bad, just very tired.

A Madrigal Group from Wisconsin Lutheran sang and it was very nice. I am not sure whether it was a brother or a father or what their relation is, but the patient was sitting near the front and the visitors came in late. Two people in front moved so that the visitors could sit by the patient up front. The "brother" sat next to his "brother" on a too small couch and listened together to the music. That made me feel really good. It made me think of all the people who have sat with me through all the difficult times. Thank you everyone for staying by my side through this experience, I know I am a better person because of it and because of you.

T

Sunday, December 11, 2011

Day +8 ... Packer Gameday!


The counts are at zero and the headaches and stomach pains continue. I did get out for quite a bit of walking today. I think knowing how bad my lungs are, and how bad they can get, keeps me getting up ad going for walks. I feel overall very lucky just having to deal with the headaches and joint pain. I know I have had some EXTREMELY rough times in the past, but some of the others on the BMT Unit are having a tough go and any thoughts and prayers could also go out to those people. I now include them in my thoughts before bed. It would be very easy to sleep all day, watch the Packers perfect freakin' season, and just try to relax, but is that what the Packers would want me to do? NO! It is such an exciting thing to watch your favorite team dominate week after week. In sadder news, we find out Ryan Braun may have run into the steroid monster, instead of the Pixar Beast. Although he claims innocence as well as the test being linked to a number of false positives. It makes me sad and I also question myself, if this is some other guy on some other team, I am saying to myself, "Yeah, whatever, you know what you out into your body. You can never let your guard down when the stakes and the label of steroid user are so high." But man! Its Ryan Braun. Clutch. Fun to Watch. Young Gun. Milwaukee Hero. I am being a hypocrite, but I am going to give Braun the benefit of the doubt and wait to hear more and get more information. In other news, all the Sidney haters will be chirping again with the Kid taking 2 games off to rest. They haven't said concussion symptoms have returned, but small headaches may have come up. All I know is, he is a tremendous talent and incredibly fun to watch. Hockey is a better sport with Sid the Kid playing. The Homestead Hockey boys came out great with 2 wins over the weekend. One win coming over 3rd ranked Marquette. Keep up the good work guys, there is always room to improve.

As a quick end to this week and a strong start to the next, I hope everyone is happy and healthy. Make sure to bundle up as COLD COLD COLD is soon to hit. Miss and Love my girls at home...12 days down, possibly 12 days left in the hospital!

Love,
Tony Navarre

Saturday, December 10, 2011

Day +7

So far today has been a good day. I don't feel quite as sick as I did last night. Still the headaches, stomach aches, and knee pains....but they are all manageable with some medication and rest.

Congrats to Homestead Hockey on a two win weekend...great win over #3 Marquette and conference rival WNS Storm. Keep it rolling guys!

Sorry for the short blog tonight....exhausted and going to turn in a little early. Have a good night and I hope that everyone is happy and healthy!
T

Friday, December 9, 2011

Getting things figured out! This is a silly Blog

Counts down to zero...lets start pumping some of those healthy white blood cells out there. Crazy how exhausted I am today. Probably over tired and feeling weird with the drugs in my system. I did go for a couple of long walks, which went a little better. My knee is still very sore, but they have some ides on how they may be able to work with that. I do need to be ready to come back. Come back to teaching, coaching, and playing in the mens hockey and soccer leagues, softball...all that fun stuff. So I made a comeback commercial in my mind about coming back to the new OIC!

Dominate the Mens League at Ozaukee Ice....I have a tagline/intro that I have been putting together for the boys over at OIC.

Start: Very quiet music http://www.youtube.com/watch?v=S9hGHnXPEi4
I roll up to New OIC in my fly new Bentley that was given to me by Tenacious D for rocking so hard against Leukemia. Some rock opera starts softly in the background.
Just as the music get faster, the cool movie voice guy says...." http://www.youtube.com/watch?v=7QPMvj_xejg
"Theres a NEW RINK."
(BOOM BOOM: explosions of noise and excitement)

"There is New Ice" (BOOM BOOM: A Fireball that looks like an Emperor Penguin)


And now....after returning from the far reaches of the earth to collect a dolphin's tears, an ice diamond from the center of a glacier, a black widow spider who can speak her name but we can't understand it cause its spider talk, and finally a piece of moon rock from the moon...you have

THE Same old Navvy!!

Oh well, all joking aside, I still have really bad stomach cramps and am getting some pretty good headaches due to the anti-rejection drugs. Making me feel pretty tired.

Good luck to all those with games and plans this weekend, I hope they go great...by the middle of next week, I should be on the road to recovery!

Day +6


Well, the truck hit last night. I figured if I was getting hit by a truck, this friendly smiling red truck is as good as any. Gradually as the day wore on, I got more and more exhausted. The cramping in my stomach made it hurt to sit or move...so I retired to bed earlier than usual. The headache struck around 6:30 after my dinner of a Peanut Butter and Jelly Sandwich, apple sauce, and cranberry herbal tea. By 7pm I was in bed for the night with strong cramping in my abdomen, and a sinus headache...you know the ones where it hurts to move your eyes around so you twist your whole body hoping that will help, but really that just makes your stomach feel worse? One of those. Needless to say, I was not sleeping well, so the nurses gave me some pain meds for the stomach and headache, and also an anti anxiety medicine designed to keep me relaxed and support some sleep. The problem with that was, they are both relatively strong medications and with my lung history, they were worried about oxygenation, so I ended up on a small amount of oxygen through the night....just to be on the safe side. Today, I am going to do the best I can to get out and walk, staying active is the best thing for me, and really try to push through the next 4-6 days. Again, it is great to her from everybody through the day, all those warm fuzzies build up and keep me going.

Thank you everyone! Tony

Congrats to my buddy Clark on their new puppy....Raji. Clark knows how to pick a name!

Wednesday, December 7, 2011

Counts Dropping

Day +4 saw a very large drop in blood counts and I am now considered neutropenic. This is how it should be. I am at my highest risk for infections now until my counts begin to recover, and this time, when my counts recover, they will recover with healthy bone marrow cells from the transplant. With any luck, Leukemia will be a thing of the past for Mr. Tony Navarre. WOW! I have noticed a significant increase in my exhaustion, and naps during the day do not do to much to still feeling tired by bedtime. My stomach is still sore and bloated from the amount of steroids they had to give me. Another unfortunate problem has been my knee. After I woke from the coma in April, I had a large calcification on my left knee. I was unable to move the knee at all, and through some hard work from my physical therapist, Lisa and Laurie, I gradually got the majority of movement back. However, since I have been in the hospital for transplant, the knee has reared its ugly head. It has been incredibly painful and to make matters worse, walking is essentially the best thing I can be doing at the moment. Kind of a rock and a hard place situation. Need to be walking, very painful to walk...oh well, I guess I'll have to Favre it out and make it through the next few weeks. Pain killers anyone? The nice little side effect of the pain killers is that it has helped to calm the stomach issues a bit. The GI tract suffers A LOT because of the rapid turnover of cells from cancer and the pain killers has helped to ease some of that pain...everyone is thrilled about this blog, I can tell. Regardless of all that, things are supposed to get worse for about a week, and then begin to return and feel better. So this may only be the beginning. However, compared to some of the other in the BMT Unit, I have been very lucky. The attitude that I have taken is this...basically, nothing can be as bad as the first 2 months of this disease. The aches and pains are nothing compared to not moving, not talking, not breathing and the 12 or so chest tubes. Keep a positive outlook and push through the hard part and there you have it. I have been able to keep busy by reading and my appetite has held well enough although I am down 5 pounds since Wednesday. That isn't too big of a deal as long as I can get the calories that I need to make sure I can heal. Thank you everyone and I'll keep you posted on how things progress...you are all fantastic. I appreciate all the texts, emails, and notes....brightens up my day!

Tuesday, December 6, 2011

Day +3

Like the Packers, I am still trucking. Today was much like yesterday. I did get out and do another 2 miles of walking, although my knee has been very sore. Tomorrow, I hope to get out of the room a couple more times, but the tired feelings are really starting to take hold. I am supposed to really get hit by it by Thursday or Friday. My PICC line dressing was changed today as well, so that all looks good and clean.

Adeline is doing better and is at home with Molly. Thank heavens.

Thanks to all of my friends who put up with my facebook requests for silly games and what not, gives me something to stay occupied with while I am here. Also getting a good amount of reading done, so thanks again to my family for my Kindle, it is working great.

Monday, December 5, 2011

Day +2 ... Packers 12-0

Much as day 1 passed, so day 2 has gone by. It is a day filled with getting fluids, pills, resting, walking, and eating. I do have some of the negative effects of the "no immune system" and will be dealing with that.

Also, as far as I can know, Adeline is doing ok. Thank you everyone for thoughts concerning her. She is a tough nugget and will be fine...I know it.

Just glad I get to hear all the great things about the 12-0 Packers and all those north division fans whining about their teams...just wonderful. Also, no excuses about injuries and what not, because the Pack had just as many injuries last season as you do presently...deal with the pain!

Thanks all,
Tony

Sunday, December 4, 2011

Day +1 Badgers Big 10 Champs!

Wow, was yesterday a day or what!

As Molly was planning to come down to be with me during my transplant, our daughter Adeline suffered a seizure and had to be ambulanced to a hospital in Green Bay. Thankfully, she is doing great this morning. We are waiting to hear from the pediatric neurologist, but all things look good.
I received my bone marrow transplant and have been dealing with the side effects of that. The side effects are not too bad now, but, from the experience of another transplant person in the unit, in about 3 days I will feel somewhat like between the worst flu I have ever had, and being hit by a truck. Everyone's experience is different, and my counts still have a long way to drop before they recover.

It was a long weekend for the Homestead Hockey boys. Their trip to Green Bay ended with two very tight losses. A 5-4 loss to Green Bay United and a 3-2 overtime loss to #1 Notre Dame Academy. It is great to see them come out of the weekend competitive. They also went to the "Be The Match" walk set up by our friend Lauren. Awesome turnout and what a blessing to have such caring people in my life!The Pittsburgh Penguins held onto their lead in the division with a nice win over Carolina...but they were OVERSHADOWED!
GO BUCKY!!! What an incredible rematch, although the end of the game was disappointing. Back and forth, the comparisons to a heavy weight fight were perfect, as soon as one team gained momentum, the other hit right back. The end though....the end...I am sorry, but why would that Spartan go anywhere near the kicker? Flop or not, unbelievable! Not quite the Hail Mary ending of the first game.

Well, the Packers play today in their, "last chance to lose" this season....which I think is ridiculous. It will be a solid game, but the Packers have the Raider, Lions, and Bears with winning records and play at Kansas City, which is a tough road game. Don't get me wrong, I am all for the 16-0. As a coach myself, I can't see any other attitude than play one at a time, and win every game.

So, the nice thing is, the sports are still pumping life blood into me as much as possible. Although I don't think I can cheer for Dale Sveum....can't bring myself to feel good about any Cub. Sorry Greenhow.

I will continue to do my best and update my blog each day, although the truck hitting flu days may be tough. All this was made possible by the people who have helped and cared so much since I was diagnosed March 16th! I can never say thank you enough, the flood of thoughts, prayers, and wishes yesterday, from texts to phone calls, facebook messages , skyping, and notes was overwhelming and incredible. Thank god for all of you.

I hope this message finds everyone healthy and happy.
Tony

Saturday, December 3, 2011

DAY 0 ... Blog 3 ... last one today

The transplant is complete. I feel very tired, a little sore, and full. They have to give a lot of fluids with the transplant, so that is also having an impact on how I am feeling now. Thank you everyone for the wishes and prayers.

Love you all,
Tony

Day 0 ... Blog 2

Just some pre-meds and fluids getting going in prep to the cells. As soon as they get here, a picture will go up. I was told that because of the infusion I'll feel strange and possibly become short of breathe or exhausted....never been there before :) Also, because there is some differences in blood type, they are also giving me more steroids to prevent the red blood cells from fighting with each other.

MARROW!!!!!
IS NOW ....


GOING IN!!

DAY 0 ... Blog 1

The process has begun....sort of.

Froedtert has to check on my blood levels: drugs in my system, how much anti rejection drugs are going through the veins, get my anti fungal, viral, biotics in me and monitor my blood pressure, temperature and heart rate. The cells flew in late last night and they will be ready to infuse sometime this morning, in the next 2 hours.

I am having a light breakfast this morning, as I am feeling the chemo a bit more today than I did yesterday. A little tired, sore throat, upset stomach...however, nothing to be worried about. After breakfast I was thinking about taking a quick walk and shower in case I feel crumby later.

As today is the day, I think I am going to try to Blog before, during and after the transplant, but who knows if that is wishful thinking or what. Good luck to my HHS Hockey boys today against ND Academy. Thank you very much to everyone who is participating in the Be the Match walk in Green Bay.

Friday, December 2, 2011

Day -1 ... Tomorrows the BIG DAY!

So, down to the last day...actually...before transplant. I figured less words and more pictures. There is no way of ever putting into words all of the support I have gotten. I am blessed! No order to this, just thrown together for all to see.

Futbol vs. Football game at Homestead High School. Kids did an amazing job organizing it!

For some reason my buddy Brent always has a decent picture of me up on his wall, along with his parents and many other members of the Eau Claire community, they put on an awesome event at Happy Hollow in EC.

The HHS students are amazing wherever they may be!

Catfish will be back at the Rubber Classic Golf Event in Antigo as soon as possible!!!

A big thanks to Ernie for setting up Operation Wish Lantern in Mequon. Beautiful!
So cool!!
Another great picture of the event in Eau Claire at Happy Hollow.
The soccer teams in Eau Claire (North and Memorial) put on a great game, all dressed in orange, the Leukemia color and decorated the field with orange ribbons, jerseys, and shirts!
The Navarre Game shirt has made it all the way to Isreal on the back of an awesome student!
More great students and players! HHS is a wonderful place to be!
The family gathered at the EC Memorial North game. Looking good!
The Bracelets were a very cool idea, it is great to see them pop up in pictures all over!
Winnie Underhill is all set for the Navarre Walk in Green Bay tomorrow, fittingly, about the same time that I will be getting my donor cells!! Awesome.
Thane and Nick made sure Navarre got to a Packer game this year...one of the first times I will be unable to physically see Da' Packers play in probably more than a decade. Thanks guys!
My friends in MN put on the Navarre shirts for a stairwalk...not sure how many flights of stairs they went up and down, but it was A LOT!!

UP UP UP

Another shot of the great students at Homestead High School, one of the most caring and amazing schools around!
My buddies from Eau Claire also set up a great 3 on 3 hockey event at Hobbs Ice Arena. My friends switched off wearing the Navarre jersey.
One of the hardest parts of this has been missing my friends weddings. So hard not to be there with them when they stood by me. However, they did remember to get a Navarre shirt in on the action. I hope it had a beer!
Finally, whats it all about? Getting healthy so that I can watch my baby girl grow up. Even she showed me some love with her one-sie.

THANK YOU EVERYONE....I love you all so much....my family can never repay you all.

Tony

Thursday, December 1, 2011

Day --1

You may or may not notice the double negative in front of the one...now, to you math people, that means it is positive one...but in this case you would be wrong.

Some of you may know that I am getting unrelated donor cells from someone in Europe. The bone marrow cells must be fresh and the cells will not be getting to Froedtert until very late on Friday night ... so in this case, the -- in front of the 1 in the title means an extended -1 day. My actual infusion of bone marrow cells will now be early Saturday morning. My transplant doctor is the attending for the next 12 days (AWESOME) so I will be getting all of the info straight from the horses mouth.

Today was a mostly good day, a little sick from the chemo, nothing bad. Some tired feelings and one little dizzy spell that I had to take a seat to get things back together. Due to the dizzy spell I am getting orthostatic vitals (blood pressure: laying down, sitting down, standing, finger stick, temperature, and heart rates and SPO2) I did walk about 2 miles today and that felt good. They are keeping a close eye on my blood sugar due to the drugs I am taking, soooo more shots, insulin and finger pricks. (Stop laughing Coach Walther) I am now the walking bio-hazard. Going to order something light for dinner, and hopefully get a good nights sleep.

Love you all....Saturday morning it is!!!
Tony

Wednesday, November 30, 2011

Day -2

I posted a tour of my hospital apartment on facebook, but many of you are unable to see that so I'll give you the brief summary.

My room is fairly large with a sink in the room and in the bathroom. I have plenty of room for my clothes, movies, cribbage board, PS3...I have a ledge on the North wall of my room which has a nice view. My computer, kindle, phone, and playstation controllers all have their space on the ledge. My family picture is on the drawer next to my bed. On the South wall there is a calendar of the 3+ weeks that I will be here (doesn't go past 4 weeks) and they have projected how I will feel through-out the process.

I am going to be very very vulnerable to infections, illnesses, etc until at least the 14th of December. So much so, that they say as few visitors as possible (none) and try not to get mail in the room, or anything that could carry germs or bacteria. The Bone Marrow Transplant Unit (BMT) is filtered, and then each individual room is filtered again from the air, so there are two sets of air filtration working on keeping germs and bacteria out.

I brought plenty of toys, books, movies, and activities to keep myself busy....like checking up on the #7 ranked Homestead Highlander Hockey team, my fantasy sports teams, and Skype. Anyone that wants to skype me feel free, just so long as you know that if I feel like crap, I probably wont answer :)

I can hardly believe that we are here, and by we I mean every person who has helped me get this far! I am sitting in the Bone Marrow Transplant wing with a vision of putting cancer in my rear view mirror! I will post again tomorrow and hopefully everyday of this journey. Thanks and I hope this finds everyone happy and healthy...until tomorrow day -1!!

Tuesday, November 29, 2011

Day -3

Another day of blood and chemo at Froedtert. Basically, what that means is that I get there, give about 3 or 4 viles of blood, go up one floor to the Day hospital, they take me back and hook me up to an IV, and then commence with the anti nausea medicines, the fluids and the chemotherapy drugs. I feel good, no side effects, and am anxiously awaiting tomorrow, when I am checked in for inpatient. I got to see my Transplant doctor once again and all went well. Dr. Palmer (she) is really good at answering questions and being on top of things. Really really happy with how things have gone with her.

As my family spent Thanksgiving in Port, we took some fun pictures of the meal preparations and I figured I could share some of them here.Our first attempt at the Thanksgiving dinner turned out pretty well I think.

The Packers were playing well, and we timed all of our food and football watching and napping perfectly.
Adeline was very into the Packer game, cheering for the Pack on many occasions.Food time fit perfectly into halftime and we enjoyed the Turkey, stuffing, mashed potatos, and green bean casserole.
Adeline got into the tub with her PJ's and diapers on before mom had the chance to catch her. All was fine, minus the changing out of the clothes again and an extremely heavy diaper.

Hope everyone's Thanksgiving was as awesome as ours and that this post finds everyone happy and healthy.
Tony, Molly, and Adie