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." 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, 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 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 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 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