Relapse

Another 3 months since my last post, that seems to be my schedule for the time being. I always noticed that other bloggers tended to fall off the face of the earth when they get released or begin a less intense phase of treatment. In my case I just didn’t see the use in ruminating about my treatment when I had the opportunity to focus on something else entirely. Once I started it became difficult to sit down and start writing again.

I suppose the most significant thing that’s happened since I wrote last was my relapse. About a week after my post on 8/10 I drove myself to the hospital in so much pain I screamed loudly enough to frighten other drivers in traffic. It turns out there were cancerous white blood cells bursting from the vertebrae in my lower back. When I finally got to the emergency room there were 3 people ahead of me and I was told i’d have to wait. Pouring sweat and trembling from the pain – I made quite a scene. I’m not sure how other people handle a situation like that. You must be out of your mind to want to work in an ER.

I was in the hospital for a month after that for another round of induction chemotherapy to try and knock the recurrent cancer into remission. It turns out it was actually not the same cancer I already beat but a new mutation. I guess that’s common with ALL.

Induction was just about as unpleasant as I remember. When I ended up back in the ER it was soul crushing. Everything had been going so well and almost over night everything came crashing to a halt and I was back to square one. Even though I’d had an incredibly short experience in treatment compared to what many people have to endure but I’d really expected the transplant to work. It was a low point which I am still finding my way back up from.

As with my first round of treatment, I responded very well to the chemotherapy and went back into remission relatively quickly. (as is detectable in my blood anyway, everything short of a marrow biopsy) Sometime during treatment for my relapse I began losing feeling in my fingers on both hands and experienced a very curious tingling down each of my arms. An MRI showed a slipped disc in my spine which was impinging on a bundle of nerves that was causing the loss of sensation in my extremities. On a whim the attending on service had decided to also get a shot of my brain while I was in the machine – while no one was really expecting anything the image showed several visible nodules on my brain which my doctor figured was residual cancer cells. Besides the image I thankfully never experienced any neurological symptoms.

Since then I’ve continued to remain in remission and in 3 days will begin the last stage of chemotherapy meant to treat to the nodules in my brain. I had a followup MRI two weeks ago which showed the nodules have disappeared completely – good in that there gone but a little disturbing because we were never sure of what it was or why it happened in the first place.

Once this last round is done and i’ve had a few weeks to recover my doctor wants to do a DLI or Donor Lymphocyte Infusion – a transfer of white blood cells from my donor (my little brother) to me to try and give my transplanted immune system a big boost to fight the cancer still in my bones. Since the transplant wasn’t able to prevent my relapse before, this is essentially my last chance to salvage all the work put into the transplant all those months. And one of my last real chances at a cure.

While a relapse was obviously always a real concern, id spent so much time focused on treatment and doing everything right that I never even had a chance to start healing and having a life again before i ended up back at the very bottom and quarantined in the hospital. I’ve been in a pretty dark place ever since. If that went so poorly, why would I have any faith in an even less proven treatment?

Even though I haven’t been as present as I would like on this blog over the last few months I have gotten some very supportive comments and emails from students, techs, nurses, doctors, patients, family members and friends – Thank you all for your kind words.

- Austin

    • Scott Ebner
    • November 6th, 2010 12:20am

    What a long strange journey this has been my fiend. Much love coming your way from Arizona. Can’t wait to see your face again. Keep being strong and take care of yourself!

    • Jennie
    • November 6th, 2010 12:04pm

    I’m with Scott! Love you A and can’t wait to see you!!

    • Rosemary
    • November 6th, 2010 6:29pm

    Hey Austin–Just know that there are so many people wheeling truckloads of prayers and wishes and energy to you … seen and unseen, heard and silent, we are with you…In the darkest hours, let this shimmering light break through.

    • Mark Hagan
    • November 6th, 2010 9:56pm

    Hey Austin, keep up the good fight. I am amazed you have the ability to communicate so well given were you are at present. Remember. tomorrow the sun will come up :) if you ever need someone to bring something the docs will not let you have, let me know. Luv ya man

    • Pat Ludwig
    • November 7th, 2010 11:49am

    Austin,
    Our thoughts are with you every day even if we don’t poke you that often. Keep up the fight and kicking ass. You will beat this thing!
    all the best,
    - Pat

    • Jenna
    • November 20th, 2010 2:11pm

    Much love Austin Castaldi. :)

    • Kristoffer
    • November 21st, 2010 6:31am

    From the other side of the globe – Stockholm, Sweden

    Hi Austin,
    Keep up the fight! And thank you for this blogg! My wife is currently suffering from ALL and are just recovering from her stamcell transplant. Your stories have been very educational and inspiring reading for me and I am very grateful and full of admiration.Don’t give up! This can be beaten!
    Kind Regards Kristoffer

    • Stephanie
    • December 1st, 2010 12:32pm

    Hi Austin! I am thinking about you also! Good vibes/juju are shooting your way from Salt Lake City! Kick this shit… Please! :D

    • Steven
    • January 1st, 2011 7:06am

    Hi Austin.

    I’m an ALL patient in Ireland, diagnosed back in December 2007. I had presented with Aplastic Anemia a few months earlier in September. They started me on the pediatric protocol, UKALL2003 version 7, Regimen B. It was suggested that someone of my age, presenting with Aplasia and other details of my specific diagnosis may fare better on pediatric protocol.

    I’m 5 months from finishing maintenance treatment. That’s 3.5 years total treatment… id be lieing if i said it hadn’t felt like 10 years ;)

    I can relate to what you’re going through. I always took a sarcastic and blunt approach to illness. NEVER took it too seriously (when i had the luxury and mental strength to do so). Its a good approach. its served me well. And although after 3 years chemo GBH – note, the GBH is rarely inflicted by the disease itself in my experience :D – I’m approaching the other end.

    I know all too well that Family, Friends and strangers telling you to be positive when they appear to you to be so far removed from where you are in your own head is annoying but sometimes clichés are only clichés because theyre true. positivity aids healing.

    I hope your journey brings you to where you want to be. Carry the shit experiences with you and deal with them at your own pace. I found that my light hearted approach – where i thought that was helping me deal – left me with alot i hadnt really processed for the first 2 years.

    I always point out to myself when i feel robbed of 3 years of my life some simple facts:
    - I experienced more than friends who travelled
    - I appreciate more than those who did charity work
    - I met people who loved life because the finite nature of their own existence confronted them

    Theyre good things to keep in mind when you think you’ve missed out. We’ve done quite the opposite Austin ;) we’ve been exposed to real emotions, real friendships and the best side of family – they will always be there for you.

    If you would like to talk any time, give me a shout. If i scared you with my sickening positivity, sorry :D Don’t be deceived though – there have been times when i have not been able to see my way out. it happens to us all.

    Steven

    • kn33ch41
    • January 5th, 2011 2:27am

    You don’t know me, and I only know you through this blog, but keep fighting. I find it intriguing that as a complete stranger I can still empathize and sincerely desire your recovery. Know that there are people in this world you have never known that think positively for you. There is more living to be had, so carry that weight and do not let it hazard your welfare.

    • Roy
    • January 21st, 2011 3:15pm

    Your courage is so inspiring. Blogs like this help others facing the same challenges! There are many resources available to you. I suggest searching the internet for programs that can help you to cope. For example the National Children’s Leukemia Foundation has programs for families, dancing and martial arts programs, that help families to bond and take their minds off of the leukemia. Best of wishes to you!

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