Tuesday, December 22, 2009

Merry Christmas!!!

Well, I can't believe that it is already December 22, Advent is wrapping up, and Christmas is right around the corner. I truly love this time of year.....what with the radio stations playing Christmas music all day, last minute shopping, crazed parents running each other over to buy motorized hamsters, and ABC Family Christmas marathons. Santa Baby starring Jennie McCarthy was my personal favorite this year....haha. And, of course.....this is the best time to reflect on what is important.... our blessings of family, friends, and faith, and to think more soundly about that Little Guy in the manger a couple thousand years ago. My first (of many, many to come) Christmas as a cancer survivor is giving me a whole new perspective on just about everything. Cancer treatment has caused me to slow down my pace this year and I am thankful for that. No more taking life, time, family, or friends for granted because we don't know how things are gonna play out. It is THE great mystery and its pretty exciting to be a part of.

I thought about trying to write a poem to the tune "Twas the Night Before Christmas" but it was'nt working out all that well.....haha.....maybe next year. So, I will just stick to my usual ramblings and quasi-philosophising. As far as my treatment goes, I am two weeks into course 4 (5 more weeks to go!!) It has been more difficult than I had hoped and filled with nausea, exhaustion, and just about everything else. Dr. Claxton expects me to fall a little bit further over the next couple of weeks so it will be back to neutrapenia and high risk of infection and hospitalization. They have also put me back on the chemo drug that caused the tingling neuropathy in my fingers and feet.....but they will keep a close eye on my symptoms. BUT....the good thing is I am still leukemia free and there is a light at the end of the tunnel.....getting brighter by the day. I was lucky enough to meey a young lady yesterday who really gave me something to look forward to. She was diagnosed with ALL 2 and a half years ago and last night was her LAST treatment. She had gone through pretty much everything that I have and she came out healthy and a better person for it. I was so excited for her and it gave me an image that "there is an end" and I can and WILL get there. Quite the Christmas present for her as well.

So, 5 more weeks of pretty agressive treatment and then things should start getting easier permanantly. That will take me into 2010 which will be an amazing year. I get swept off my feet and get to become the husband to the most amazing, beautiful girl there is. I will continue my education and move to a new city. And I will continue to fight this cancer until it is no more. I also signed up with the Leukemia Society to be an Honoroary Teammate for an awesome group that is going to hike the Grand Canyon in May to raise money to stop leukemia in its tracks. I am hoping to make that trip with them....though I may have to rent a mule or something this year. The Eagles are also making their trek toward their first Superbowl victory. Evan, Tyson, Christy, Logan and I made it to the game on Sunday and we made friends with some of the Eagles cheerleaders.....there is visual evidence that I will post on facebook

I hope that this week finds everybody happy, joyous, and with loved ones. Thanks for being my loved ones during this journey. It has been quite the ride and I would have been hapless without you.

Merry Christmas, God bless, and ALL Will Be Well

"And suddenly there was with the angel a multitude of the heavenly host, praising God, and saying, 'Glory to God in the highest, and on earth peace, good will toward men.'" --Linus inspired me to use this

Friday, December 4, 2009

Good Job, Marrow!

Yesterday was my appointment with Dr. Claxton to discuss the results from my bone marrow biopsy taken at the end of the 3rd course of treatment. I didn't sleep too well the night before and woke up with a huge headache....probably from stress. I am still trying to kick that headache actually. The first bit of good news was when I found out that I had gained a few pounds (gotta celebrate the little victories) so, watch out, soon enough I will be back to my intimidating self. The the doctor came into the room on-time (must have been an alignment of the moons or something). Within the first few minutes of him being in there he mentioned, almost as an aside, that my marrow had come back clean and with no signs of residual leukemia. I instantly let out a huge breath....he must have thought there was a draft of something. I had to ask him to repeat himself and double check just to be sure. He did and I was on top of the world. This basically means that the chemo has been working up to this point and cleared out my marrow of all leukemia. Those are beautiful words. This does not mean that it is all over (not even close, unfortuneately) but it is certainly a very good sign. Things are as positive as they could be up to this point. There is still one more 7-week course of very agressive chemo and then 3 years of monthly maintenance. So, there is still a battle to fight, but we are winning and won't stop until this thing truly regrets the day it chose the Lyons boys.

As I was laying in bed thinking about all this last night (since I couldn't sleep again cause of that headache), it just seemed like very appropriate timing. Advent is all about waiting and appreciating that wait because what is at the end is very worthwhile. That wait can be hard, challenging, and not easy but the finish line offers amazing rewards. Moving on to this 4th course feels like there is a finally a light at the end of the tunnel. Its still small but its getting brighter and I/we (can't do it alone) will follow that light at all costs......sounds like 3 other guys who followed that light 2000 years ago....and that seemed to pay off.

Anyway, that's enough philosophizing for now. I'm just so happy about yesterday's news and energized for the next part of this fight. Thanks for fighting with me. It means everything. No doubt that.....

ALL Will Be Well

"Christmas has lost its meaning for us because we have lost the spirit of expectancy. We cannot prepare for an observance. We must prepare for an experience."

Monday, November 30, 2009

Truly humbled

This weekend was definitely one to remember. Thanksgiving was great....I shared it with 32 of my closest friends and family. Colin and Kathleen were up from the land of the crimson tide and it was so good to see them as a married duo for the first time. Mrs. Gabler somehow pulled off the perfect meal, despite the numbers.....a very impressive feat and countless bottles of champagne were successfully downed. Mainly, it was just nice to spend time with friends and family. My brother Joe and his wife Sarah came in on Friday and, as always, it was great to be with them. On Friday, the whole lot of us avoided the lines at Best Buy and Target and hit up the movies. We saw The Fantastic Mr. Fox and I give it an enthusiastic "eh". Hanna also found a wedding dress!! She won't tell me what it looks like but it could be a tablecloth and she would make it glow. Then Saturday was the ALL Will Be Well 5k which was probably the most humbling experience of my life. The parking lot was filled with cars and the lobby was packed when I got there. I couldn't believe how inspiring it was. My extended family, friends from all corners of my life, nurses from Hershey, local community members, and people from my high school class and the trinity community were all there. Local businesses donated food and raffle prizes. I have never felt so much love and support coming out of one room. The run and walk were a huge success......I definitely would have won if it weren't for this cancer business and Kelly was able to get me a Golden Tate signed Notre Dame jersey, which is amazing. Much love and thanks to everybody was was there, who donated and who supported. The Leukemia Society and the Team in Training were there giving out information and the Be The Match Bone Marrow Registry was there signing people up the whole day. Its amazing to think about the lives that could be saved by the people who were courageous enough to sign up for that registry. That's really what its all about. Life is so good.....so amazingly good. Kelly Fisher, Ms. Kiker, Janet Quigley, Mrs. Gabler and tons others deserve so much credit for organizing this event. Its an impossible feeling to describe but I just feel so "lifted up" by the love that was poured out over the weekend. In the 6 months that I have been fighting this nastiness, I have never once felt alone and that culminated on Saturday. We are not meant to tackle life alone. We are given our faith, our God, and our fellow people and I have needed, and will continue to need, all of those. Anyway, I am still in awe at how amazing the event was and how amazing the people aroume me are. The icing on the cake was going to the Eagles game on Sunday with my dad as they squeaked out a win against the hapless Redskins. It was a great day....thanks again Uncle Ed for the tickets.

This came at a good time because this is a pretty big week. Tomorrow morning I have a bone marrow biopsy....this is gonna be my first one in a few months so I am nervous for a few reasons. First of all, it tends to hurt...alot. I will be sure to request my fair share of Morphine beforehand to take care of that. Second, and more importantly, it will give a picture of how/if the agressive treatment has been working. I have just been trekking along for a bit now with no real markers as to if the leukemia is staying down for the count. No matter what I will keep fighting the good fight until it is down for good, but we are hoping that this biopsy gives a good sign that we are headed in that direction. On Thursday, I will see Dr. Claxton to talk about the biopsy and my treatment and my progress through the whole thing. Please send positive thoughts and prayers this week for all that is going on. And please continue to pray for my dad.....he is a rock and I love him more than he knows.

These meetings with Dr. Claxton always scare me so I will be very anxious until Thursday. I will let everybody know any news as I find out.

much love, so much thanks, and ALL Will Be Well

"Blessed are those that can give without remembering and receive without forgetting."

"Do not get tired of doing what is good.
Don't get discouraged and give up,
For we will reap a harvest of blessing at the appropriate time."

Wednesday, November 25, 2009

Happy Thanksgiving!

Sometimes it takes a major event to open our eyes and make us realize all that we truly have. I am so blessed and have so much to be thankful for this holiday week. My friends and family continue to blow me away everyday with their selflessness and generosity. I have had alot of time to think (that is when I am not applying for The Amazing Race or watching The Price is Right) and I am more certain than ever that humans are built to help each other out. We are wired to live "for" each other. Once I am healthy (and in the meantime), I am gonna give it my all to live that way....to give back some of what I have been shown over the last few months.

So....as far as my treatment goes, I have hit a bit of a roadblock. The last 4 times that I have gone in to receive chemo, I have not been able to get it because of a low platelet count. This has been kinda frustrating because I don't like slowing down the pace. I wanna pump that stuff into me, knock this crappy cancer out of me, and get on with living. But, I have had to stay patient. My blood and my body has just been so abused that it is taking a long while for my body to rebuild to a normal platelet count. I have also been dealing with a significant amount of nausea and lack of appetite....ugh. One of these symptoms is always seeming to afffect my daily life. I am trying to get this under control with some new meds. Next week will be a big and monumental week. I have a bone marrow biopsy and then a meeting with Dr. Claxton to discuss the results. As usual, I am scared of the biopsy, and even more scared or the meeting with the doc. He will bascially be able to tell me, based on the biopsy results, if the cancer is still in remission and running scared or if it is returning. So, say some prayers this week. Take a break from turkey eating, pumpkin pie gorging, and football watching, and say some prayers of thanksgiving for all that you are blessed with and also for these results next week.

As I write this, 2 of my best friends are on their way home from alabama, my fiance is en route for the weekend, evan is making some cranberry relish (typical evan), and tons of family and friends are getting ready to support me and the cause to cure leukemia this Saturday. So, I have no shortage of reasons to give thanks. God is taking care of me.

ABC local news in h-burg decided to do a story on my dad and I, as well as the 5k. It was pretty awesome of them and I am attaching the link. Take special note of the slow motion effects at the end.....as well as that sexy cowboy in black and white yearbook picture....haha. I guess I need to get an agent now and ship off for L.A.

Safe travels to everybody and enjoy this time with family.....

much love and ALL will be well

Thursday, November 19, 2009

amazing story

I just wanted to share this story about an amazingly inspirational family. Their little boy Dax has Leukemia and is fighting for his life:


--"Don't count the days; make the days count"

Monday, November 16, 2009

fALL days

I'm just sitting here relaxing after two of the most fantastic November days ever. It has been warm, sunny, and beautiful here in the H-burg and I've been loving it. I could get used to this but I have a feeling that it will be short lived and that winter will soon be making its unwelcome appearance. Yikes, that means that I have to start Christmas shopping, wedding planning, and preparing to be 29.....3 things I am not sure I have skills at. Hanna and I are trying to firm up the reception site.....hopefully this week. After that, I'm not sure what happens but I think I will start working on napkin origami figures for the place settings. Any ideas?

So, over the last week, I have noticed that my hair has started to grow back. Its not that peach fuzz, "I'm 15 and just getting facial hair", hair, but it looks more like my real hair. This was also confirmed by the unwelcome return of a few nose hairs (another impact of turning 29).....maybe chemo had more benefits than I realized. But, I am not exactly sure why. Maybe the chemo in the Third Course does not affect the hair like some of the earlier drugs. Either way, it is nice to have a little taste of a return to normal.

I went out to Hershey on Friday to resume chemo for the third round but they sent me home after they ran my blood counts. Apparently my platelets had dropped too low to give me the chemo drugs. So, the third course is on temporary "pause" for the time being. I went back yesterday and my platelets were still too low so I will go back again tomorrow. Whenever the platelets get back to a normal level, I will get back on track with this chemo. The frustrating part is that it will bump back the next bone marrow biopsy and meeting with Dr. Claxton. So, it might not be until the second week of december that we get any more feedback or results. Oh well.....we just have to press on. The positive side of this is that I have been feeling pretty good....low platelets doesn't make me sick and this chemo isn't the worst. So, besides some exhaustion, I have been alright and lovin' life.

I have about 100 pages to go in the Dan Brown book and it is so hard to put it down and accomplish anything else. So, know how much I like you all by writing here instead of reading :)

The 5k (www.allwillbewell5k.com) is coming up in less than two weeks....I can't believe it. Thanks to those coming, thanks to those organizing, and thanks to those who will support with love and prayers from afar. So much to be thankful for this season and this is a perfect example. People are pretty awesome.

Well, that is about it for now. I am still recovering from having my heart broken by the Eagles and the Irish on yet another football weekend. I am watching Jeopardy and quite jealous of the "Clue Crew"....those people that travel around and give some of the clues from famous locations around the world. I'll take that gig. I know that was a bit random....but, seriously, that is a job for me.

Much love and have no doubt that

ALL will be well

--"As we express our gratitude, we must never forget that the highest appreciation is not to utter words, but to live by them."

Friday, November 6, 2009

The fight goes on

It has been a while since I last wrote (I blame Dan Brown's new book) and not too much has changed since my last post. I am about half way through with course 3!! which is a good thing. I am looking forward to putting this far behind me. The chemo has been pretty tough on me. Its given me what seems like heartburn symptoms. I have been getting ill after most meals....though it hasn't stopped me from many a conquest of the Big Mac and the great General Tso. I have not been very sick or nauseous, just unsettled after I eat and after I take my pills. I started a regimen of Prilosec this week so I am hoping that has some effect. Other than that, I have just been completely exhausted and still dealing with the tingling/numbness in my hands and feet. But, all in all, I can't complain..... Evan got me a netflix subscription so I am good to go. What I can complain about is the outcome of the World Series. It was good to see some competitive games but the Phils just never looked very consistent. I think somebody should check Petite's blood for some roids.....he's too old to pitch that well twice in the Series....just ask Pedro...haha. But, in all seriousness, it was alot of fun to watch the Phils make their run and I'm ready for a rematch with the Yankees next year. Now I can focus on the Eagles getting that elusive first superbowl.

From what I am being told, 6 months is not all that much time to plan a wedding; so Hanna and I should keep ourslves busy with that.....although we are a little clueless on where to start.....I am thinking we should start with practicing the moonwalk for our Michael Jackson tribute entrance, but I might be overruled on that one. We are so pumped for April 10th and can't wait to make our vows and start our lives together. I will hopefully be in full remission and this cancer nonsense can be a small, but influential, chapter in our lives. We hate this, and I mean really hate it, but we have learned so much and have been afforded the opportunity to rub our eyes, refocus, and see just how beautiful a life this is. Cancer certainly takes but if you can't focus on what it gives, you are bound for bitterness and sadness.

The next time I will get any sort of real update on the condition of my marrow (still don't really know what that is by the way) will be the first week of december. After the 3rd course mercifully ends, they will do another bone marrow biopsy and check for cancer and whatever else it is they check for. Dr. Claxton will examine the results and let me know how this treatment is going. We are hoping and praying (constantly) that there is no return of the leukemia and that the chemo-only protocol has done the trick. Please pray for that outcome. If the results lead to some concerns or if there is obvious leukemia back in my bones, then we will chance the course of action and probably move quickly toward a transplant. We will cross that bridge if/when it is presented. Too much to think about otherwise.

Like I stated earlier, I have been really sick and, even moreso, I have been really scared.....for myself and my dad (not to mention my mom and bro). It is hard and exhausting to be scared everyday about something. This thing is so unknown and terrifying if you dwell on it. So, although, it has been impossible to bury completely, I have focused on drowning it out with friends, laughter, trips, plans for the future, family, good movies, good books, good music, and so much more. I'm very blessed and that is most evident in the love and support of my friends. For example, I received a care package from some friends that I traveled to Guatemala with a few years back. Also, I recieved a Christmas card (all time record for earliest one ever) with an extremely generous gift from some friends I have known since kindergraten. I am overwhelmed that my high school class is supporting me through the 5k. And that is just the tip of the iceberg. I could go on and on. So, thank you.....this love lifts me up and makes it possible to drown out the fear.

Well.....I guess that is enough blabbering for now (really I just wanna get back to the Dan Brown book). Know that I think of everybody who reads this frequently and I lean on you and your prayers every day. And know (as I do) that...

ALL will be well

“If I have the belief that I can do it, I shall surely acquire the capacity to do it even if I may not have it at the beginning.” --- Gandhi

Wednesday, October 21, 2009

On to course 3!!

I am officially a week into the third chemo course. It feels good to get back on track and start crossing off these days one at a time. There are two main drugs that they are using in this course (it should have been 3 but they eliminated the one that causes the neuropathy and numbness in my fingers and toes.....that's good news for my dreams to become a concert pianist). The good news is that the drugs don't affect my blood counts quite as much so I don't have to go in for transfusions quite as frequently. The bad news is that I have had terrible morning sickness (think Arnold in 'Junior'.....still think the Academy robbed that fine piece of art). I have trouble keeping food down, but really just in the morning then I get progressively better as the day goes on.

Okay...one piece of big personal news: Hanna and I set our wedding date for April 10th!!! I am beyond pumped to spend my life with her and can't wait for that amanzing day and every amazing day that will come after. Its less than 6 months away so it is gonna come up pretty quickly.....yikes, i had better start practicing some crazy entry dance to "Thriller" or another 80s classic. that I can put on youtube and gain mediocre fame for. Speaking of time flying by, my friends Colin and Kathleen are getting married this weekned. It's going to be beautiful and I am really looking forward to spending the weekend with their amazing friends and family. I am still unable to put weight on (if only Mcdonalds sold Shamrock Shakes all year round) so I will have to try to beef up for the next few days to get into my tux. I am realy proud of both Colin and Kathleen and am excited to be a part of their lives together.

My dad has had some good news recently. He had been on a chemo drug that was administered 24/7. So he had to carry with him a box with a tube and a needle that was incredibly demoralizing and frustrating. The hospital was able to replace that pump with some pills. This will give him so much more freedom and peace of mind. Praise God! He has a blog at daniellyons.blogspot.com.

Thanks again to Kelly Fisher and the rest of my high school class and senior officers for organizing a fundraiser to help me through this ordeal. It will be part of our 10 year reunion (can't believe I'm an old man) over Thanksgiving weekend. Check it out at www.allwillbewell5k.com.

I am currently trying to get permission from the State to work part-time from home. There is lots of paperwork and red tape involved and papers signed just to get new papers (ahhh....government work). Pray that I will be able to work a little bit in the near future. It will give me peace of mind

I guess that is my update for now. I can't believe that I have been fighting this beast for over 4 months now.....some days it even feels like a lot longer. But, I can't stop until the end is in sight. And now there is April 10th to focus on!! This fight is tiring, boring at times, and incredibly scary so thanks from the bottom of my heart for sharing it with me.

much love and ALL will be well

"The world is indeed full of peril, and in it there are many dark places; but still there is much that is fair, and though in all lands love is now mingled with grief, it grows perhaps the greater."

Wednesday, October 7, 2009

Chemo break!

After over two months of fighting, I am finally through with the 2nd course of chemo. This was such good news because this course really brought me down at times. It put me in the hospital, it forced me to go to Hershey 4 or 5 times a week at times, it destroyed my appetite, affected my coordination, and a whole bunch of other unpleasantness. For the last week or so, I have been in recovery mode so that my red and white blood cells can recover. Just over the last couple of days, I have started to feel a ton better so I should be ready for the next course to start very soon.....its gonna knock me down again but it is worth it to take one more step forward, one more step toward curing this beast.

The last few weeks have not been all time spent at Hershey. I was able to go to the U2 concert in DC which was unreal. It was my first time seeing them and one of those things that I have always had on my life "to-do list". Evan and I went and met some friends when we got there. Despite a fall on the way in (the drugs have caused me to lost my coordination and some motor function and people probably just assumed I had enjoyed tailgating a little too much), I was able to last for the whole concert and hung on every word Bono had to offer.

The next step as far as treatment is another meeting with Dr. Claxton on Monday. He will examine me and see how the treatment is progressing. Hopefully he will clear me for the next course so that we can get closer to the end. I won't have any "real" knowledge of how the cancer is reacting until the 3rd course is over. That is one of the hardest parts: having to wait and just question how well all this is working.

Since my loss of sensation has been pretty bad in my fingers and toes, the doctor and nurses have decided to eliminate one of the chemo drugs, vincristine, from my regimen. So hopefully I start to get that feeling back and some of those motor skills without losing much with regard to quality of treatment. I am hoping to be in good shape for my good friend, Colin's, wedding in a few weeks. We have traveled the world together and he has been there every step of the way and I can't wait to celebrate he and Kathleen's marriage with them.....dance floor: watch out, I've been working on my human worm.

I want to send lots of love to my Trinity High School class of 1999. As a part of our upcoming 10 year reunion (gosh....it makes me feel old just typing that), our class president, Kelly Fisher, and many others are planning a 5k to support me in my battle to get this cancer out of me. There will also be a bone marrow registry drive as part of it so that we can get the word out about the importance of registering. It will be November 28th (the Saturday after Thanksgiving) and all the info can be found at www.allwillbewell5k.com. Of course I would be running and winning this race if I were healthy (thank goodness I can play the cancer card!!)

I know I have said it about a billion times but I can't tell you how much everyone's support has meant to me. Hanna has been at my side, making me smile from day 1; my parents, Evan, Colin, Kathleen, my PMA coworkers, and the Gabler family have helped in so many ways. And then there are those who are not close by, but have given me strength when I have needed it and reminded me to keep talking to God, even when it is hard.

And so the journey continues and cancer does not stand a chance because ALL will be well!


All shall be well,
and all shall be well,
and all manner of thing shall be well.
(prayer written by a 14th century mystic.....I smell copyright infringement)

Friday, September 18, 2009

the end of summer

Last night, my parents, Evan , and I went to the Light the Night Walk in Harrisburg. The Light the Night Walk (lightthenight.org) is a nation-wide fundraiser for the Leukemia and Lymphoma Society. I mean, the spokesperson is Tina Fey.....so it must be a big deal...haha. It was awesome to get away from the house and do something outside and it was really inspirational to see the amount of people in this area who came out to try to do something about this cancer nonsense. Its a 2-mile walk and all of the participants carry balloons with lights inside of them so it makes for a cool scene with all of these lit balloons in the sky. Couple that with a hot dog truck and some free giveaways and it made for quite a nice night. The bone marrow registry was also there and evan got his mouth swabbed and got all signed up.....he's hoping for a match in Hawaii or Spain or something. Everyone should check out to see when the Walk is in their area cause it was definitely a great event. Cancer sucks, I mean really sucks, alot, all the time, it is evil; but it has provided me with the chance to meet some amazing, inspiring people who are working toward cures and who just want to love those who are afflicted; not to mention giving me a new appreciation for my friendships, and for that, I am thankful.

Other than that, I have just been hanging out, trying to stay healthy, trying to get some rest and trying to get a bit of exercise everyday.....maybe I could join one of those old lady groups that do laps around the mall every morning. The Fall TV premiers are now upon us so I have stumbled upon some new shows. I may be addicted to Glee already and that also 'may' be something that I am not supposed to admit to others. I'm also getting behind my Phils as they head for a repeat and I'm not gonna let a broken rib dash my dreams that this is finally the year for the Eagles.

Back to Hershey and back to chemo tomorrow morning and I will be ready to get the fight back on. My fingers and feet are still pretty bothersome but I am hoping they are able to adjust things a bit to help with this.

Its hard to believe that it is now Fall and summer is over. I am moving on to my second season of trying to beat this back, which is crazy...sometimes it feels like this has been going on forever and sometimes it still feels like I just got the news. I am still afraid but now I know more about this fight and I'm ready to head into the Fall and outlast the new crop of reality TV shows and do what it takes to win.

ALL will be well

"To get through the hardest journey we need take only one step at a time, but we must keep on stepping"

Tuesday, September 15, 2009

A visit with the doc

Yesterday I had my monthly appointment with my main oncologist, Dr. Claxton. Like usual, I had lots of butterflies and nearly made myself sick worrying about what he may or may not say. I knew he was going to talk about transplants and that made me extra anxious. So, my mom and I showed up and had a pretty productive and positive meeting. He was generally happy with how I was holding up physically and with the progress I am making on the clinical trial. I told him about some of the troubles I have had with this second course and he said that it was common and that I was doing pretty well all things considered. As far as a transplant, Dr. Claxton is not entirely comfortable with a non-related donor transplant in this case. He said that since I was able to attain remission on my last biopsy we should keep going with the clinical trial unless there is a setback. So, we will keep going with the chemo-only treatment and hope and pray that we can get this cured. So, for now, the transplant is off the table. The doc was a bit concerned with the loss of sensation I have been experiencing in my fingers and feet. I have been having tingling sensations and some loss of motor skills. So, we might be reducing the dosage of one of the drugs that has that side effect. Hopefully, this will help to restore some of the lost feeling. All is all, it was a positive meeting and helped to recharge me a bit and prepare me for all of the treatment still coming my way. Two and a half weeks left on the second course!! The finish line is in sight!!

Sorry for the dry post but I just wanted to get all of the info from this meeting out to everybody. I will meet with him in another 4 weeks......so I have a bit of time off before all that anxiousness kicks in again.

Hanna has been coming home for the weekends and for my chemo so that has been keeping me going. I'm real proud of her for taking on a new job and a new city through all of this other chaos. Her strength has been my rock. We had a great weekend last week and I'm ready for her to be back again. I mean, heck, we got ourselves a weddin' to plan ;)

I don't have any treatments until Saturday so I am off to get some rest and get work on staying healthy. Thanks for the love, support, and prayers. It lets me know that...

ALL will be well

"The most beautiful thing we can experience is the mysterious. It is the source of all true art and all science. He to whom this emotion is a stranger, who can no longer pause to wonder and stand rapt in awe, is as good as dead: his eyes are closed." -- Al Einstein

Thursday, September 10, 2009

slow and steady

Since I have been out of the hospital, I have just been taking everything day by day, slow and steady. There have not been any major happenings...except for the start of the second half of the second course....hey, I gotta break it up as much as possible :) This course has still been extremely rough on my body. I have been extremely exhausted, had pains in my legs, had diarrhea, and I have had zero appetite. That has led to me often being unable to to hold down food because I keep trying to force food so that I can get my nutrition. All in all, it has been a challenge, but, in all honesty, I feel pretty good today and that is what matters right now. No need to dwell on the past, not enough time to worry about the future. Today I feel good and feel ready to use my own power to take steps to my own future.

The next big stepping stone is a meeting with Dr. Claxton on Monday. We will discuss the option of a transplant as well as the progress of my treatment. I am hoping to learn more about my path with this treatment and how he sees it going forward. I am anxious and hopeful that he will be happy with how the chemo is attacking the leukemia......hell, if it is knocking the cancer down like it is knocking me down, it will regret the day it set up shop in this marrow. This marrow is a battle zone and the fight will continue as long as it has to, even if I am weak and tired. I guess that's where you guys come in. In the end,

ALL will be well

"So damn easy to say that life's so hard, everybody's got their share of battle scars. As for me, I'd like to thank my lucky stars that I'm alive and well......" --Kenny Chesney and Dave Matthews

"Aim at Heaven and you will get earth thrown in; aim at earth and you will get neither" --C.S. Lewis

Monday, August 31, 2009

Day by.....more like, minute by minute

The last two weeks have presented quite a number of challenges. I'm sorry for not writing but it has been a rough go of things. The Keith Urban concert was great.....I wasn't able to get a bling'ed out belt buckle in time, but I was looking pretty 'cowboy' if I don't say so myself. It was a new kind of concert experience. I really was not feeling well that day so there was no tailgating, I wore a mask, and we dad in the "reserved" section, which is the little platform with fold-out chairs for people in wheelchairs and with other disabilities. That actually turned out to be kinda fun cause they were in a good location, we had nobody in front of us and we could move around a bit. All in all, it was alot of fun.

After the concert, I really started to feel quite sick.....just feverish really. I had alot of aches and pains and chills and would get really cold and was unable to warm myself up. Then for about three of four days I had the worst headache of my life (and that is saying alot as those of you that have lived with me know all so well). It was constant and it was awful. It made it pretty hard to do anything. I was confined to Evan's couch....of which there are many worse places in this world...he is quite the cook and he took good care of me, along with Hanna, Mrs. Gabler, my parents and everybody else around the H-burg. I took every pain killer they would let me take and nothing really worked all that well. Then, remarkably, last weekend it went away for good but my fever symptoms started to get worse. There seemed to be no end to all of this. My body felt like it was in surrender mode. So on tuesdy I went in for a blood transfusion, expecting to be there for a few hours, and didn't get home until Saturday. They admited me to the hospital for my fever and infection and I was there or four nights getting pumped with fluids and antibiotics. The first few days were miserable because I felt so ill all day, then the next few days were terrible because I was eating rubbery scrambled eggs and watching law and order all day. That was a good sign that I was feeling better. The more you realize how bad hospital food is, the healthier you are and more ready you are to come home.....thats good rule of thumb.

So I was released on Saturday and have been tired and recooping at home, but I feel a million times better. This is the best I have felt in weeks. They even had to postpone the chemo that I was supposed to get last Thursday because I was not strong enough until Saturday just before I left. That means that Friday will mark the halfway point for Course II.....Saturday I will start the second half. It will feel so good to be on the way to being done with this course. It has really roughed me up more than ever.....but I am standing tall, flexing my muscles (or whatever ones are left) and takng steps foreward. Its the only thing to do and i know I have so many people to lean on to get it done. At times this week, I really did have to shift from a 'one day at a time' attitude to a 'one minute at a time' attitude. It was so overwhelming and so frustrating that it was the only way to get through.....and it helped. I also had a great conversation with an old, white-bearded, African Dominican priest while in the hospital. He told me to take this time to appreciate the silence. I took that to heart. We don't do that in our lives and I am going to keep that with me. It helped in the hospital.....although there is less silence there than you may think.....haha, for example, they decide that the best time to take your weight is at 5am for some reason. But, for real, everybody should appreciate silence more often. Its a beautiful thing, it gives clarity, and can help you see things anew.

That has been my journey over the last two weeks. I hope the next two are not so bad. But, no matter what, I know I will get through them. One more thing to share since the last post. My brother was not a match for my marrow. But that is okay....we will just move on and do everything we can. If I need a transplant, it will be from a non-related donor and I will succeed. If I don't need a transplant, I will succeed just the same. It does lead me to encourage people moreso to register for the donor list. it really does save lives.

Well, its getting late and I'm watching Venus trying to survive the first round of the U.S. Open which probably means that it is time for bed. Love and prayers to everybody and.......

ALL will be well

"Diseases of the soul are more dangerous and more numerous than those of the body."...so true

Monday, August 17, 2009

Little Victories

First, I apologize for the lack of entries over the last week. It has been a busy one with lots of trips to Hershey Med Center and a few glorious days relaxing at the beach. After starting Course 2 of chemo two thursdays ago, I had four consecutive days of chemo then I was able to sneak away to Bethany Beach for three nights. Let me tell you that was way better medicine than any anti-nausea meds or blood transfusions. I spent the time with the whole, amazing Gabler family, as well as some other very close friends. It was such a blessing just to feel that sand and smell that ocean air. I'm definitely never taking those things for granted again. The three days were filled with lots of sun, some great food, tons of laughs, and, most importantly, normalcy......no hospitals, chemo injections, or talks of blood counts. I came back for four more consecutive days of chemo which ended yesterday. Now I have a couple days off and will go back on Thusday for three more kinds of chemo......it seems to never end. But, there is a big bright spot this week as well. Hanna and I are heading to the Keith Urban concert on Tuesday.......I think I'm gonna have to go cowboy hat and boot shopping today......or at the very least acquire some sort of obnoxiously large belt buckle.

This round of chemo has been particularly rough. I have lost my appetite and have been extremely exhausted most of the time. The last few days I have been dealing with fever symptoms and lots of aches, pains, and headaches. Nothing has been too unbearable, and I am the first to recognize and thank the Lord that I could be in worse shape, but I have just not been comfortable or felt like myself much the last week.

I guess the other looming stress has been the question mark about a transplant. I feel like I could be gung-ho and focused on the attack more if I knew for sure what was gonna happen. It is still unclear whether the Dr. Claxton will recommend the chemo only option or a transplant. Both are scary and have their risks, both short and long term, but it is the uncertainty that is killing me right now. I want to go full steam ahead one way or the other and it is difficult to just put the brakes on and wait for a bit. My brother Joe went into the hospital last saturday to be typed for his bone marrow to see if we are a match. Siblings are the safest and most likely donors so that would be ideal if we matched. Its a 1-4 chance. I will keep you all posted on those results.

So, during these tough next few weeks, I am going to take it day by day and avoid the big picture until it is more clear. There will be little victories in every day and I will make sure of it. A date to a concert with my gorgeous fiance, an email from an old friend who used to live down the street, a hug at the right time, a good meal, one more day checked off of treatment, a college friend training to run in a marathon for the Leukemia Society, getting back in touch with members of my high school class who are doing amazing things, a day on the beach. Its the little victories that mean the most and help you overcome the biggest obstacles and lead you toward your ultimate victory.

I want to share one more story of the last couple weeks. On the first day of course 2, there happened to be another 28 year old male who had been diagnosed with ALL there starting his first day of treatment. He has been married 6 years, has 2 children, and has already beaten testicular cancer. He is back at it for his second bout with cancer before the age of 30. I was inspired by his demeanor and his readiness to fight. I am hoping that he and I can stay in touch as we go through this together. Please keep him in your prayers....as well as another friend of mine who was recently diagnosed with MS.

Keep the prayers coming as always. I would not be where I am without the people who are reading this blog. I owe you so much. Thanks for walking the walk with me and alwyas assuring me that.....
ALL will be well

"And I'll be awful sometimes, weakened to my knees; but I'll learn to get by on little victories" --Matt Nathanson

"For I know well the plans I have in mind for you, says the Lord, plans for your welfare, not for woe! Plans to give you a future full of hope" (Jeremiah 29:11)

Friday, August 7, 2009

Back at it

After taking a day to celebrate the good news of reaching remission, I returned to Hershey yesterday to start Round 2 of the chemo treatment. This round is supposed to be pretty long and pretty intense. The goal is to knock the leukemia while it is down. The chemo drugs (and there are a slew of new ones.....most of which I can't pronounce) will hopefully keep the disease at bay and prevent it from relapsing. So yesterday I had a spinal tap where they put some drugs into my cerebral spinal fluid, a shot of chemo directly into my arm, some chemo by pill, and an IV. I think if they could invent another way to get the drugs in me, I would have had it yesterday. I'm surprised osmosis wasn't an option....haha

So it was a very long day and I am feeling pretty drained from it but my mind is back in the game and I am ready to keep fighting. There is still a long way to go, still a chance of relapse, still a chance of needing a transplant and still alot of battling to do. Bring it on.

Speaking of transplant, it has been something that the doctors have thrown around a little over the last few weeks. I have learned a little bit about it and know that it is best and safest if it is from a sibling. In order to be prepared for that option, my brother is going to be "typed" for his bone marrow tomorrow. This is not to say that anything is definite but the doctors want to have his information on file in case we go down this road.

I am dragging this beast back in the ring and putting the gloves back on. Thanks for being in my corner and know that

ALL will be well

Tuesday, August 4, 2009


Holy cow! I feel abou 10 pounds lighter (which, incidentally, is not a good thing right now)

I just received the call with my biopsy results and found out that I am officially in remission.....my blast cells were less than 5% and I can officially move on to phase 2 of the treatment WHEW!!!

So we were able to take down this cancer from 97% all the way to about 3%.....not too shabby, and that 3% had better watch out.

Words cannot express how much I appreciate the love, prayers, and support from everybody reading this and everybody in my life. It has been inspirational to hear from so many loved ones that have been with me through this journey.

This was evan's fortune cookie from lunch today: "There are 3 colors, 10 digits, and 7 notes, it's what you do with them that matters". Not sure how that applies, but it seemed really profound.

ALL will be very very well

Monday, August 3, 2009

The waitng game....

So, after an anxious night and an even more nervous morning filled with tons of apprehension and even more prayer, Hanna, my mom, and I went out to Hershey to get the results of Friday's biopsy. .........
.........(i'm building the suspense)

...and we waited and waited a long time just to hear that the results had not come in yet and that there was no news. So, today was a great exercise in patience, endurance and maintaining peace of mind.

It's pretty unnerving to have to continue to wait for such important news, but its okay and all will be well no matter what they come back with. I am ready to face anything and prepared for any news.....I have those amazing people around me to thank for that.

I should be getting a call tomorrow with the results. That will decide whether I start course 2 of the clinical trial, move on with some over chemo that may be more effective, or head in the direction of a transplant.

One more day of prayers is only gonna help in the long run; that and some words of wisdom from the great Tom Petty, "You take it on faith, you take it to the heart; the waiting is the hardest part"

Also wanted to share the toast that Cliff the balloon pilot made to us over champagne after our inaugural hot-air journey:

"The winds have welcomed you with softness. The sun has blessed you with his warm hands. You have flown so high and so well that God has joined you in your laughter. And He has set you gently back again into the loving hands of Mother Earth"

Sunday, August 2, 2009

Dreams do come true

This has been quite the eventful week and there is so much to share. I did not receive any chemotherapy treatments since last Friday in preparation for yesterday's bone marrow biopsy which will tell us the results of this second phase of the first course. So I had a pretty free week with just a few visits to check on my blood counts, platelets, and the such. So, I was feeling great and ready to make certain what I already knew so well.

I proposed to Hanna on Thursday night and have been on cloud 9 (could even be 12 or 13 ever since). She is my dreams come true and the most amazing, beautiful, kind, strong woman I know. It will be such an honor to fulfill my vocation at her side and to share every step of our future and our lives together. She has been my rock and I hope to always be her's. I feel so incredibly blessed......and, oh yeah, she said YES!!

We went on a picnic at this beautiful state park overlooking the Susquehanna river and Lancaster county and enjoyed the setting sun. I asked her to marry me and then surprised her with a hot air balloon ride around the area. It was absolutely amazing....stunning views and a perfect setting for the perfect night. Check out a few picures:

Prayers are often answered and life is very very good!

The night was perfect. We then went back home and were able to celebrate with our amazing families. On a side note, the guy in the last picture there was our balloon pilot, Cliff. We were just chatting and he turned out to be very inspirational and I think our meeting was providential. He had been laid off from his job a few months earlier and decided that he was going to do something positive with his time. He went to the blood bank to donate blood and then returned later to donate plasma. While he was there, he learned about the need for bone marrow donations and decided he was going to join the registry. So, he was very familiar with blood cancers and interested in doing whatever he could to help. We learned so much from his positive attitude and his ability to take a difficult situation and turn it into an opportunity to serve.

After that perfect Thursday, I was pretty much ready for the biopsy that took place yesterday. We went out to Hershey and Patti and some of the other nurses had an engagement cake waiting for us because they are that awesome and that kind and that nice. My dad happened to be out there receiving his treatment the day before so he had spread the word.

The physician assistant, Hoang, who performed the bone marrow biopsy hooked me up with some morphine and the whole procedure went rather smoothly. She is quite good at what she does and one of the people who make the trips out there so pleasant. She was able to get a good sample of blood and marrow and so now we pray and we wait for the results. I will meet with Dr. Claxton on Monday to discuss the results and to discuss how to proceed from here. I am really nervours about this meeting, but hopeful that the leukemia has decided that it is time to "peace out" of my marrow. There is no other treatment planned beyond this meeting because it all really depends on what they find. If the leukemic cells have dropped to beneath 5% than I will most likely proceed with the clinical trial; in not, they will proceed in a different direction which would either be a new regimen or a possible transplant. No matter what happens, I have so much to fight for and I will fight like hell with all I got.

I think I could probably write a book about the things that this journey with cancer have taught me so far. There has been fear, more fear, tears, enlightenment, laughter, more fear, new friendships, hope rekindling of old friendships, a new look at my amazing future, and new persepectives on faith and love. Mainly, through the doctors, nurses, friends, and family, i've realized that its not about a journey with cancer....its more like a journey with yourself and how 'you' choose to live. So, thats the mentality I am going to keep through this weekend, through Monday, and through whatever comes after.

ALL will be well

Monday, July 27, 2009

one week in, one to go

I apologize for the lack of communication over the last week. I was able to cram three more chemo sessions in between Monday and Friday. On Monday I received one of the drugs that I had only received once, peg-asparinagase, when I was an impatient. I guess it is a pretty serious drug that can have some pancreatic side effects. But they were pleased with the results from the last treatment and pleased with my labs from that day so I told them to bring it on and they gave it to me on Monday. It seems like my body responded pretty well to it. Then I had Tuesday, Wednesday, and Thursday off. On Wednesday, Hanna and I went down to Alexandria because she had orientation for her new job with Fairfax County Schools (Congrats to her!!) I was also able to help her do a little apartment hunting, which I was excited to do. And, of course, we got to see the trifecta of Blayneys which is always a treat. Then on Friday it was back to the hospital for the last chemo treatment of this "extended first round" It was a chemo called vinchristine, which i have had several times. The worst side effect of this treatment is a loss of sensation in the fingertips. It is almost like a constant prickling or numbness that has been with me pretty much from the beginning. It is one of the more constant side effects are pretty annoying, but there could be many worse things. They said that the feeling should eventually return it just may take a while, even after treatment is over...ugh. I guess I should take up a career in putting out torches with my fingers or something in the meantime...haha

One more highlight from the weekend, Mr. Gabler, Evan, Logan, Hanna, and I went down to the Phillies rout of the Cardinals yesterday and sat in one of the skyboxes. It was a very memorable experience of cheesesteaks, peanuts, and Jimmy Rollins go-ahead grandslams. Thanks again Mr. Gabler for that opportunity.

Now this week is more of a waiting game to see how the chemo affects the residual leukemia left in the marrow. I went to the hospital yesterday and again tomorrow to check 7,456 different kinds of blood markers to see how I am doing. For the most part, they have been very pleased with how my blood has maintained.

Then, Friday is the big day. I go back in for a 4th bone marrow biopsy (no worries, the morphine has already been requested). They will find some corner of my bone to draw into and take out the piece of bone that will analyze where we are at. Then it is a bit more waiting over the weekend and a meeting with Dr. Claxton on Monday to analyze the results.

So, this week is full of a lot of hope, a good bit of tears, a ton of fear, and some anxiety, oh, and, lets not forget, tons and tons of prayers. If the leukemia decreased to 5%, i believe we will move on to the next course. If there are some more setbacks or complications, they we have to put it into the hands of the doctors and see where they wanna take it from there. Either way, I am ready....scared, but ready.

As this time goes on, it is becoming more and more the routine, which I guess is good in a way and scary in a way.....though some days it still feels like this all began yesterday and I have yet to catch my breath. One thing I have never felt is alone and for that there are not nearly enough words of gratitude.

Im not gonna lie and say I was not crushed by last weeks news, but I did pick myself back up and I am ready to fight for whatever it is they tell me I need to do....more chemo, transplant. I will get through this stronger.

One other thing I want to mention just because it has been on my mind lately is the bone marrow transplant registry. I will write more later because I do not have tons of details but I think there are popular misconceptions about this procedure. It is almost always non-evasive and not too different than donating blood. A donor goes to an inpatient center and they draw his/her blood for about 4 hours, filter out some stem cells, and filter back in the rest of his/her blood. The stem cells are then used to infuse the cancer patient and those cells hopefully take over the marrow and create a whole new immune and blood system. It is not painful and relatively easy and saves tons of lives. This is something I never knew but hope to become more involved with. You can learn more at www.marrow.org

Well.....this is long enough for now. Keep praying for this big week, but know that, no matter what...
ALL will be well

Here is one for the ages: "If you wanna view paradise, simply look around and view it" - The Great Willy Wonka

Sunday, July 19, 2009

its a new week

I had a rough time dealing with the news from Thursday's meeting with Dr. Claxton. I dwelt on it a lot this weekend but I am now ready to face the new week with a new attitude. There are things that are in my control and what is happening in my bone marrow is not one of them. What I can control is my attitude, my demeanor, my faith, and my heart. So I am going to focus on those things and I am going to continue to do my part. I am still scared and still unsure of how the next chapter of all of this will read, but I will not be brought down. And I know that this book is going to be a good read and it will involve victory in the end.

On Friday, I started the second phase of the first course of chemotherapy. It involved two drugs given through an IV. I go back tomorrow to get a third drug and then again for one more treatment on Friday. Then I wait a week, have another bone marrow biopsy and they will see if this extra two weeks will throw me into remission. I am hopeful that this will be the case.

Friday was also an uplifting day that I want to mention. I spent the day with Mom, Dad, Grandmom, Aunt Ann, Alexis, Kelsey, Hanna Jo, Colin, Evan, Mrs. Gabler, John Hand and little Max at my parents house. It was great to be surrounded by friends and family. And there was great love, great support, great food, and great hugs from all of them.

Also, one more bit of good news. My taste buds are pretty much restored. Everything is a little off, but no more metallic taste, no more sweet taste, and I am enjoying food again.

Thanks for walking the walk with me.....it is inspiring and means more than anybody knows and it helps me to go on fighting, even though I am scared, sometimes terrified.

ALL will be well

"Cancer is so limited, It cannot cripple love, It cannot shatter hope, It cannot corrode faith, It cannot destory peace, It cannot kill friendship, It cannot supress memories, It cannot silence courage, It cannot invade the soul, It cannot steal eternal life, It cannot conquer the spirit."

Thursday, July 16, 2009

a setback

It was not the words that I wanted to hear from Dr. Claxton, "I am a little concerned about the results." The last biopsy found residual signs of leukemia and a remaining 12% in my marrow (they were hoping that it would be under 5%). So that means that I could not move on to the second course of the clinical trial. Instead I will be going on with an extended portion of the first course. So it will be two more weeks of similar treatment to what I have been getting.

It really upset me because I feel as though it is something that I have no control over. I have held up my end of the bargain over the last month but the marrow inside of me was unable to do the same. Dr. Claxton also had some concerns about some of the chromosomoes within the marrow.

So it was a down day. The worst is the feeling of helplessness. It is just a matter of if the leukemia is being cleared out or not and, up to this point, it has cleared out alot but it could have been better. Today was the first day in a long time with alot of tears, but I was able to share them with my mom, hanna, colin, and evan......which helped more than they know.

Tomorrow I will go back for more chemo and start the drugs of the first course over again. This will last for two weeks, followed by another biopsy and more tests that will hopefully show the leukemia in full remission, less than 5%

I'm gonna keep doing my part and fighting hard and staying positive, but it was hard today and really scary to know the treatment hasn't fully cooperated. It brought back the fear from the original diagnosis.

Cancer is an unknown beast and a faceless evil. Its so hard to think about it being in my body. I'll do everything I can to get it out of me but I just hope and pray that it and the drugs do their part now too.

I know that I will wake up tomorrow ready to take on the chemo and positive about knocking this out of me. Today was just a tough pill to swallow.

but still.....ALLwill be well

I'm sticking with this quote for now:

“Have no fear of moving into the unknown. Simply step out fearlessly knowing that I am with you, therefore no harm can befall you; all is very, very well. Do this in complete faith and confidence." -- Pope John Paul II

its claxton time

So, I guess the third time was the charm. On Tuesday I went in for the bone marrow biopsy and the spinal tap, but this time they slipped a little morphine and ativan into my IV and it was way easier and way more comfortable. According to Hanna, I was also WAY loopier which provided her with some extra entertainment...haha. I am telling you though, there really was z zebra in that room.....nobody believed me. But, in all seriousness, i was thankful for how smooth it went. Nurse Practitioner Connie performed the procedure and I think also got a kick out of my chatty goofiness. Because I stopped taking this pretty powerful steroid on Tuesday, I have also had some withdrawl pain from that in my body.....It kinda feels like I spent 3 rounds in the ring with that big Russian guy from Mike Tyson's punchout. Its a throbbing of the muscles and joints everywhere. But, they were able to give me a prescription pain killer that has really helped. I'm glad that modern medicine and the nice people at Rite Aid Pharmacay have my back on all this stuff.

That piece of marrow that they took on Tuesday holds the answers to how well the treatment has been going. I go to see Dr. Claxton today to evaluate the results, see where I stand, and make decisions on where to proceed from here. I scared and anxious, but excited to find out just what has been happening in my body. I can hold up my end of the deal, stay positive, and fight with everything I have but now we will know if the chemo is holding up its end of the deal.

Extra prayers today are greatly apprecieated. I truly thank everybody for walking this walk with me. It has taught me so much about my family, my friends, people in general, my faith, and myself. And, no matter what the results today, the fight is still on and I'm not stopping and..

ALL will be well

“Have no fear of moving into the unknown. Simply step out fearlessly knowing that I am with you, therefore no harm can befall you; all is very, very well. Do this in complete faith and confidence." -- Pope John Paul II (maybe he was reading this blog.....)

Monday, July 13, 2009

Big Day Tomorrow

Just wanted to post a quick update. I was at the hospital this morning and today was the grand opening of the new and improved cancer treatment center at Hershey Medical Center. My appointment was at 8am so I was the very first patient.....they said my door prize would be in the mail...haha. Its a great new facility and the cancer treatment area has alot more space and alot more privacy.....not to mention flat screen TVs and a snack room....i told them they would never get rid of me now. My blood work today was all very positive.....particularly my white blood cell count almost doubled, which means that I am less prone to infection and don't need to worry as much about particular foods or crowds or anything.

Tomorrow marks the end of the first Course of my Clinical Trial......Day 29 -----it will be rewarding to cross that one off on the calendar. I will be having two injections of chemo, a bone marrow biopsy, and a spinal tap where they will put chemo into my spinal fluid. Then they will run approximately 488,149 tests on all of that to see how well the treatment has been working. I go back on Thursday to meet with Dr. Claxton, my main oncologist and get the results. If the chemo has killed enough of the leukemia cells then I will graduate to the second course of treatement which is a whole new slew of medications and chemos. If there is still a significant amount of leukemic cells in my marrow then I will be extneded for another two weeks on similar treatement to what I am currently getting and then re-evaluated. So, I am saying some serious prayers that there are good results this week.

On a happy note, I had an amazing weekend in St. Mary' s Pennslyvania at a family reunion with the Gabler family....who have been a second family and so much more than that for over a decade now. It was incredible uplifting and healing to be around such amzing and loving people. Did way more for me than any drugs or hsoptial time could have. I thank them all for including me in their family. I also got go be there as my Hanna and my rommie Evan became new, first-time Godparents to their newest Godson...Ronan Francis Blayney. It was great to be there.

much love and ALL will be well

Thursday, July 9, 2009

Its breezy up there

Well, yesterday I joined the ranks of the greats.....Yule Brenner, Michael Chicklis, Howie Mandel,......Demi Moore. Check out the pics:

This is just getting started......6 hands at work, i had ALOT of hair.

I tried to convince everybody that this was a good look. Sort of a half comb over.....i didn't get very far.

.........and finally:

Like father like son! I think we look pretty sharp

Tuesday I had two more treatments of chemotherapy. I handled it pretty well and have been able to stay pretty active and healthy. I'm hoping that trend continues. This is the beginning of the last week of the first course of treatment. There is still a long way to go but it is exciting to hit some milestones. Still just looking at it one day at a time. This coming Tuesday I will have another bone marrow biopsy and another spinal tap to analyze the effectiveness of the chemo in the first course. This will be the first MAJOR test to see how things are progressing. I am nervous but hopeful. Hanna and I are off to Hershey right now to see if I need any blood transfusions, so its not a bad trip. We kind of look forward to these trips actually....the nurses and other patients are amazing and we have alot of laughs and I'm excited to show off my new 'do'. Special shout out to Nurse Patti who made me an orange creamcile smoothie the other day, trying to fatten me up. She's a rock star.

There are not enough shout outs to my friend and family either. I could not stay positive without you all. Much love and...

ALL will be well.

A quote my friend Hubert sent me that I loved:
"Feed your faith, and your fears will starve to death" -- Author Unknown

Monday, July 6, 2009

Three weeks in....

Today marks the completion of the first three weeks of the first stage of chemotherapy. It feels good to be into this a little bit and on my way with this fight. I have had some side effects of the chemo.....fingers tips have some sensory issues, things have sorta shifted from tasting really "metallic" to really "sweet". Some would think of this as a bonus....but its not as good as it sounds. Its more like waffle syrup being on everything at all times in gross quantities. gets a little old. I have also slendered down 20 pounds which i am trying to put back on........pardon the pause here while I gnaw on this stick of butter :) And they tell me that the mane of hair on my head should not be long for this world either. But, i'm okay with that. The Commish was one of my favorite shows growing up.

The doctor also received the results of my second bone marrow biopsy. They said they saw a decrease in the number of leukemic cells.....which is a good thing and on track to what they expecteced to find. So the treatements seem to be doing what they are supposed to be doing at this point.

Happy Independence Day to everybody! The highlight of the weekend was being able to have a completely normal day on Saturday, drive to Alexandria with Hanna and Logan and meet Ronan, the one week old baby boy of my good frineds Shana and Warren Blayney. He is gorgeous and already has more hair than I will have in a few days. It was inspiring to see new life and gave me even further reason to dive back into this fight.

I head back to the hopsital tomorrow to start the 4th week of chemo. I will two pretty powerful drugs tomorrow so hoepfully they don't knock me off my feet.

I could never truly express what my friends and family have meant to me through all this. There are not enough thank you's to go around. the cards, books, food, hugs, calls, texts, and visits have all meant more than I can express. We will all fight this together....one day at a time. and, not doubt.....

ALL will be well

"If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or fight like hell." ---Lance Armstrong (hoping he wins it again this year)

Wednesday, July 1, 2009

Some more bragging......

so not only do i have the smallest amount of red blood cells ever recorded, I also apparaently have the hardest/densest hip bone in town. The bone marrow biopsy went okay yesterday but the nurse practioner had a very difficult time breaking into my bone because it was so strong.....I was rather proud :)

Other than the biopsy (which is to check to see if the treatment has been clearing out the marrow of the bad cells), i had two different chemo treatements yesterday. All went well and I have been way less nauseous this week. The nurses at the outpatient chemo center are all amazing and I think that there will be some new lifelong friends out of this hiccup. I cant say enough about everybody I have interacted with out at Hershey.

I also want to brag some more about those around me. I had a great surprise yesterday that came at a great time. Some of my friends made a scapbook for me of memories and well-wishes and it was an enormous spirit lifter. I can't describe how blessed I feel.

Well, today is another day to cross off the calendar, take a big step forward, and kick some butt. its the only option.

thanks for walking with me. Here is another favorite quote of mine:

"Friendship is unnecessary, like philosophy, like art, it has no survival value; rather, it is one of those things that gives value to survival"

and....ALL will be well

Monday, June 29, 2009


Tomorrow is a big day for me out at Hershey. I am having my second bone marrow biopsy (basically drilling into my hip bone and hollowing out a nice little chunk).....which is about as fun as it sounds. I am also having two different IV infusions of chemotherapy. I'm a bit nervous because the few days after chemo last week were pretty rough. I had alot of nausea which really decreased when they put me on some more medications, which i was thankful for. I have also had a pretty constant tingling sensation in my fingers and lips and that metallic taste to all food that I consume. In conclusion....I'm over this whole chemo/leukemia thing. I wonder who I could talk to about that. But, in all seriousness, it should be a long day......but it will put me one day closer to knocking this thing down and out for good...which I will do.

I also want to thank everybody who has reached out to me, prayed for me, loved me, sent me cards, gifts, and books. It means everything. Its the difference between showing up alone for war and showing up with legions of soldiers at your side. Makes the task a whole lot less daunting, a little less scary. And, today was one of those days where I was a little more scared and a little more down. So, thank you for being there.

I will let you know how tomorrow goes.....

Much love and remember.......

ALL will be well

Saturday, June 27, 2009


I want to share the amazing news from this morning. My good friends Shana and Warren gave birth to Ronan Francis Blayney, a healthy young boy. Congrats to them!! I can't imagine happier news.

"Miracles do not, in fact, break the laws of nature" -- C.S. Lewis

Friday, June 26, 2009

.....and so it begins

The fight is on!! The world will now have to deal with two Dan Lyons' battling cancer with everything they have.

As of June 8, 2009, I was diagnosed with Acute Lymphoblastic Leukemia (ALL), a fairly common form of blood cancer that affects the ability of the immune system to fend off infection because it creates too many white blood cells. I won't write tons of scientific "stuff" about the disease itself (heck, thats why we have wikipedia). In all seriousness, the National Cancer Institute probably has the best/most accurate details of everything you could imagine.

The first thing I want to do is thank everybody for all of their prayers, thoughts, cards, calls, texts, food, and just their love. It has been so evident and so overwhelming. I love you all so much. At the suggestion of some family and friends, I decided to start this blog so that everybody can join in on the fight and journey with me. I apologize if the first post is a bit fact-based and boring, but I want to get the word out there and get everybody up to speed.

It all started a couple months ago on the first nice day of the year when I went to "impress" my girlfriend Hanna Jo with my stellar tennis ability. After about 4 points, I was completely winded and nearly on my back. I had dizziness, limb pains, and just complete exhaustion way too rapidly. But, since it was the first day in the sun, I just chalked it up to being dehydrated and not quite in "summer shape" yet. A month or so later I had the same symptoms while at a wedding in Baltimore. They were worse this time and I felt my heart racing, so I was pretty scared. I called my family doctor that Monday and when I saw him on Friday he was instantly concerned with my symptoms. I give him lots of credit because he checked up on me all weekend while he was waiting on the blood tests to confrim his hunch.

Then on June 8th, my doctor called me and told me to head to Hershey Medical Center. There was a bed ready for me on the "cancer floor"....which raised a few red flags. The doctors and nurses were all unbelieveably compassionate and understanding. Soon the diagnosis was confirmed and the fight began.

Many of my initial symptoms were related to the lack of blood in my body. The cancer had knocked out most of my good blood, especially the red blood cells that carry oxygen throughout the body. So, for the first three days I had 8 red blood transfusions. They said that I had the lowest counts of anybody that they had ever seen walk in the door on their own.....I was quite proud of myself for that...haha. In fact, there was a parade of nurses that kept coming into my room wanting to see the guy with no blood...haha.

After the transfusions and a trillion other tests, including a spinal tap and a bone marrow biopsy (which was a pretty awful experience), they let me go home for a few days before the start of my chemotherapy. After a glorious weekend of chinese food, mcdonalds, and pizza, I went back to the hospital to start my treatement. They have me on a very heavy regimen of chemotherapy that is usually two to three times a week. Since this cancer is most common in children and they have better success rates in children, it was good news that they told me my disease was reacting more like it usually does in children. For this reason, they enrolled me in a clinical trial designed for young, healthy, strapping, handsome (obviously, i'm talking about myself here) adults. They are putting us through the more rigorous treatment that works well on younger bodies.

The chemotherapy is into the second week now and the worst part has been the nausea this week. I thought I was a bit of an "Iron Man" at first, but now it is all starting to catch up to me. The good news is that I am home, able to do everything from outpatient as long as I stay healthy. They have also ramped up my nausea medication so hopefully that helps.

Well, I think I am going to cut this off for today. I just wanted to get this thing up and running. I truly do not have the words or enough hugs/tears to express my gratitude to everybody that I know I have in my corner. My parents, brother Joe, roommates, friends, and family have been here and, I know, will be here through everything. My girlfriend Hanna Jo has been at my side for every step and I'm not sure how this would be going without her. Thank you!

And, lastly, but never leastly, there is prayer. Thank you for the all the prayers coming from the world over. I feel them, I know them, and I return them.

ALL will be well

p.s. The title of the blog was Hanna's idea. Its the title of one of our favorite songs from The Gabe Dixon Band, "All will be well". Its an appropriately, inspirational song....you should check it out.