New Skin

It’s been a while since my last post – Since then I’ve undergone one more cycle of the high-dose methotrexate and was re-admitted this morning for a third and final round.  The chemotherapy hasn’t been too bad aside from some nausea for a few days after the dose but the constant back-and-forth of being discharged and then re-admitted only days is getting to me. This earth-shattering headache I’ve been fighting is just starting to clear up now to my incredible relief.

The medicine isn’t even all that interesting right now, my future is (roughly) as follows:

  • Today – final dose of too much methotrexate
  • ~ Thursday – discharged
  • ~ March 19 – admitted to begin total body irradiation
  • ~ March 24 – transplant
  • Next 6 Mo. – recover

About two weeks after I was diagnosed it hit home that this disease might kill me. The thought of one day trying to draw a breath and not being able to terrified me, I was angry at the world for forcing me to confront my own mortality like this and I felt completely empty and hopeless. Thankfully after a day or two these feelings passed, I’ve since learned more about my disease so that I feel I understand the risk it poses to my health. Besides, it may sound arrogant but I don’t really plan on dying, not yet anyway.

Since then I’ve held things together by focusing on the problems ahead of me, the next deadline, anything to give me a goal I can work towards.  When I went home on Feb 15. I was alone with my thoughts in a way I hadn’t been since my diagnosis. I had a piece of my life back – my apartment, my clothes, my car, my stuff – But it didn’t feel like I was home. It felt like everything had changed, like some shade of color had drained out of my life and I couldn’t quite put my finger on what it was. It wasn’t comfortable and it wasn’t home.

After spending so much time in the hospital you expect a wave of relief when you get to go home – and while I was relieved, it didn’t last. As much as I was angry at the cancer for forcing me to confront my mortality before I planned on it, being home it forced me to evaluate what I really have left in my life. what if I don’t die? What life do I have to pick back up? Now that I’m 23 and most likely infertile I can tell you how much I’ve always wanted a little girl. In the last 6-months I ended a long-term relationship with a girl who I planned on marrying. I sank my entire sense of self-worth into my job which i’m not even physically capable of doing right now. What exactly did I want to come home to so badly?

I hate this cancer for forcing me, at 23-years-old, to miss the daughter I may never have.

– Austin

    • Pat Ludwig
    • March 5th, 2010 11:08pm

    Austin, good to hear your voice again! Haven’t wanted to bother you besides the occasional message on FB or here. I figured you’d say something when the spirit moved you. And I get reports from others from time to time. But what i do want to say right now is: Hang in there.

    You’ve had to confront mortality at an age when most people are still deluding themselves that they are going to live forever. Pretty harsh ain’t it? And it may seem at the moment like everything has lost its flavor but in fact in some ways you are lucky to be able to see your life with this much clarity. People not facing death rarely question the terms they live by. Much to their disadvantage when life throws them a curve. Muddle through in a state of confusion and fear. But situations like this allow you the chance to strip away all the bullshit and see behind the curtain. If it feels empty right now, don’t despair. I predict this is just a temporary re-alignment of values. You will soon fill your life with what really matters and believe me it will be sweeter than anything you thought you had before. And don’t write-off your dreams of a family or whatever quite yet. Just focus on healing and the rest will take care of itself.

    • Cindy Brown
    • March 6th, 2010 7:47pm

    Austin, it is great to hear from you again! I have been looking forward to your blog update and have been thinking of you. You have been confronted with some serious obstacles these past few months, and there are more to come. Hand in there!!! Believe that when the treatments have ended, the best is yet to come.

    • Cindy Brown
    • March 6th, 2010 7:49pm

    I meant HANG in there! Not hand in there.

  1. There was a period in my late teens that I did not believe I would survive. Situations made my life appear that I would not survive for more than a few years. Life was hopeless. My family was very supportive but I could not see the forest through the trees. I went through a long period just going through the motions. I worked 3rd shift at a boiler room. We played chess to pass the time. One night, one game changed my perspective. I fought harder, I climbed out from the bottom of the well. I took me 6 years – it was a roller coaster. In those 6 years, nearly died in car accident, I started and completed college, I got married and divorced.

    I now look at the journey of my 15 year old son after his brain injury trauma. He was a nationally ranked soccer player, skied off the cliffs in Europe and Rocky Mountains – neither of which he has done in a year and may never do again. His life is currently limited by his depression, noise/light sensitivity and mind crushing headaches. He attends school 2/3 of regular schedule and accomplishes 1/3 of what he used to. He is a shadow of his current self. He is a teenage who balks the treatment plans.

    I recall the day I heard about Austin’s leukemia. My first response was disbelief, followed a desire / drive to help my friend through this journey to successfully beat leukemia. The face book group was created the next day. The next month I started contemplating his next career (technology analyst) and I who help him get that job like I helped with his Jazd job. I have seen his roller coaster begin the painful journey. I see his parents and family support him through the thick, thin and thinner.

    What Alex and Austin have in common for me is the following
    1) They are both in my dreams and prayers every day

    2) I have confidence they will both survive for another day, another decade.

    3) Their future lives will be different from what they had expected earlier in their lives – just like me.

    4) That passion, persistence and a burning desire to see tomorrow’s sunrises and sunsets will see them both through the journey and roller coasters.

    5) I believe they both have something to contribute to us all that that is unknown now, has not started nor yet completed.

    Tomorrow the sun will rise, and we will all continue our journeys and roller coasters filled with challenges, pain, and joy as we continue down the road of life – one step at a time.

    — Jim

    • Mark Hagan
    • March 7th, 2010 2:38pm

    Austin,

    Great to hear from you. If you need some company let me know. We will get through this and you are not alone.

    There is a saying that God does not give anyone more that they can handle. You are handling a lot right now. I truly hope that sometime in the near future, you will find a blessing in this great challenge.

    Love ya Man :)!!

    • random guy from the internet
    • March 7th, 2010 3:07pm

    <3

    • all ears
    • March 7th, 2010 4:11pm

    I have never been touched by cancer and won’t try to lend my empathy to that. What did touch me was the idea you’ll never have a daughter.

    As an adopted daughter to a loving couple I can safely tell you that DNA does not a father make. Should the moment come in your life you can consider adopting it won’t be the same as going through 9 months and birth. What will be the same are all the scraped knees, nightmares, giggles, and hugs.

    Here’s to enjoying your reddit bump!

    • michelle
    • March 7th, 2010 4:47pm

    found this blog through a post on reddit.com.

    i just wanted to put this little anecdote out there for you to marinate on…

    my boyfriend’s younger sister was diagnosed with ALL when she was 16 years old. she went though rigorous amounts of chemo for about a year and a half. she was well informed of the side-effects, including possible infertility. i think she, and the whole family, were kind of prepped for that too. accepting that she would probably never have any children.

    two weeks after her last session, she found out she was pregnant. today, that baby is a beautiful, healthy 5 year old girl.

    keep the hope. don’t fret on unknowns just yet.

    • Elim
    • March 7th, 2010 4:48pm

    We don’t know you in person, but we thought we’d drop by to say… Hang in there and stay strong.

    Best wishes,
    The Internet
    x

    • another redditor
    • March 7th, 2010 5:09pm

    I don’t know you, but it sounds as though you are a good guy. Keep up the positive attitude and get through this. You will find love, happiness, and adventure when you least expect it. And guess what? The next girl will be even better than the last. One more piece of advice… once you are better, get out of the country for a few weeks (or months!).

    • yet another redditor
    • March 7th, 2010 5:17pm

    You seem to be a strong, brave person. You’re in our thoughts. <3

  2. Thanks Reddit 🙂

    • Kevin
    • March 7th, 2010 9:49pm

    Austin,

    Regarding sterility, even if you become sterile, maybe you could possibly adopt or become a Big Brother.

    Best of luck.

    Kevin

  3. Hey Bro,

    My name is Mike Fraser. You don’t know me but I saw the post on reddit and just wanted to give you a shout out of support. I’ve been where you are. Got diagnosed with ALL at 18, relapsed at 21, then had a BMT at 23. Don’t give up my friend. There will come a day when all of this seems like a bad dream, I promise you.

    I love the blog idea. I actually tried to make my own documentary with a high 8 video camera of the whole transplant, but the doctors weren’t too keen on the idea. Still, I did what I could with what I had, and it served as a great outlet for my experience and an even better distraction to pass the time. Keep up the great work, but rest when you must.

    I’m 28 now, healthy, in Chicago living life to the fullest. If you ever want to talk, please shoot me an email at mgfraz@gmail.com. I definitely have insight on issues you may be facing or are going to face in the future. I had a lot of amazing people come forward to help me when I was in your shoes. If I can help just one person get through ALL, it will all be worth it.

    Email me when you get a chance, and God Bless.

    • sheryl
    • March 7th, 2010 11:24pm

    I am so impressed by your courage. I’m twice your age and I don’t think I could ever be as brave as you are.

    • Brian
    • March 8th, 2010 12:10am

    You are so strong and you are so brave. I believe in your ability to live with this and live to the fullest. Don’t give up on that little girl – love will always find a way.

    • Jeffrey Green
    • March 8th, 2010 2:15am

    As my doctor said to me once,”Well Jeffrey, when I got in there we found a lot of junk but now its done. May the force be with you.” Best wishes for a speedy recovery.

    Jeffrey Green
    Port Orchard, WA.-Bionic man. Don’t ask.

    • Kevin
    • March 8th, 2010 3:43am

    Hello from Reddit!

    I hope you hang in there. A positive outlook can work wonders. Soon, when you’re picking your life back up, you’ll have a blank slate to work with. And one way or another, I’m sure you’ll have that little girl and find what makes you happy.

    • Craig
    • March 8th, 2010 4:58am

    The end almost made me cry.

    You’re inspiring, just so you know. I hope the world doesn’t have to miss you – at least not before you’re an old fogie.

    • Another Redditer
    • March 8th, 2010 4:59am

    Thinking of you during your road to recovery

    • Maldoror
    • March 8th, 2010 5:50am

    Hey,

    Just thought I’d say hello, and wish you well. My thoughts are with you.

    Best regards,
    M

    • Brian
    • March 8th, 2010 7:21am

    Your strength is an inspiration to us all.

    • Redditor
    • March 8th, 2010 7:22am

    Hello Austin.

    Science bless you.

    • Mvoewf
    • March 8th, 2010 10:22am

    @Redditor

    Seconded!

    Austin, thanks for sharing your experiences with the internets. Hope everything works out okay for you.

    Don’t forget that you can always adopt a little girl someday. Giving a home to a child who might not otherwise have one is one of the greatest things a person can do.

    • Rez
    • March 8th, 2010 10:37am

    you da man

  4. Hi Austin,

    Just read your recent blog. If your physicians did not mention banking your sperm, ask them now. It may not be too late.

    You could ask to speak to a fertility expert. It is easy enough to check for viability and concentration of cells now. Even if it looks like a slim chance, do consider putting a specimen or specimens into a frozen sperm bank.

    An acquaintance of ours who was about your age when he was diagnosed banked his sperm before radiation treatment for lymphoma. More than 5 years later, he fathered one child and then a year later-twins. This was done by in vitro fertilization–not an unusual procedure these days.

    Don’t give up hope.
    Mary Lou

    • no one in particular
    • March 12th, 2010 4:27pm

    I think this a is post that any young person should read and think about as a healthy dose of perspective is incredibly beneficial.

    • Steve Brown
    • March 22nd, 2010 2:57pm

    Austin. I’m a friend of your parents’. We very briefly met a long time ago when your Dad was working for Cisco (where I work still). I count myself as one of the many ‘Friends of the Castaldi’s’ that wish you all the best during and after your conquest of leukemia.

  5. Hey man, hope all is well, hang in there!!!

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