DIAGNOSIS

For the last few months of 2009 I began getting sick frequently – nothing alarming on it’s own but by November I was beginning to miss noticeable amounts of work. I found myself spending more and more time ‘recovering’ from some awful cold or a flu I couldn’t shake. Once or twice I’d gone to a walk-in clinic for antibiotics I didn’t need but being 23-years-old I never took the step of actually taking a day off work and seeing my doctor.

By early December it should have been clear to me that something was seriously wrong. I was constantly fatigued and had night sweats which were so severe I’d be lucky to sleep a few difficult hours a night. I had a constant (24-hours a day) headache which the walk-in clinic told me was a stress headache – this made sense because at this point my performance at work was so spotty and inconsistent anyone in my position would be stressed. I had non-descript bone pain which would afflict a certain part of my body for several days at a time then simply go away only to reappear in some other area later. The mere act of getting through the motions of the day had become a chore, never mind any kind of reasonable focus on work or my personal life.

People can adjust to a lot though and I still had good and bad days. There were days the headache would subside to the background, work was manageable and I might even get some satisfying sleep – it made it easier to ignore just how unmanageable the bad days had become. The week of Christmas I found myself unable to get out of bed on the bad days. physically unable to will myself into the shower or to get dressed, I would wake up pale white and stay that way all day. On one occasion I was actually paying enough attention to decide it probably wasn’t OK for me to drive because I couldn’t be sure I wouldn’t just pass out on the highway. Still – the gradual progression of my sickness made it easier to ignore once it got to this point.

With Christmas around the corner I had plenty to do and all of it was a good excuse not to find time to see my doctor. It helped that I was “between” primary care physicians at the time and the added chore of finding a new doctor was something I’d have to deal with if I really wanted to be seen by someone. After getting a few references I finally got into a Beth Israel Deaconess Medical Center (BIDMC) doctor’s office on the morning of December 29th, my chief complaints being the headache, an incredible amount of bone pain in my ribs and the other generalized symptoms I’d  experienced over the past few months. After a thorough exam I got a prescription for migraines and he sent me for chest x-rays and blood work that morning – not really expecting to find anything exciting but (thankfully) being thorough.

That night around 6:oo pm I noticed I’d missed several calls over the course of an hour or so from two odd Boston numbers, both left several long messages. One set of calls was from my new doctor who explained very calmly that the blood work they’d done earlier in the day was “alarming” and he’d called ahead to the BIDMC emergency room to let them know the situation and that I’d be in immediately. The next set of messages was slightly more urgent from the ER explaining how important it was I get there right away and asking if I needed an ambulance. I was lucky enough to have my good friend Scott with me, he drove me in to the ER (I still managed to navigate us 30 minutes in the wrong direction down storrow drive, I hate that damn road).

Aside from the fact that my blood counts were all at rock bottom, it was already clear from the tests they’d done during the day that I had some form of Leukemia – though no one had mentioned this to me yet. When I walked in the ER I just mentioned a few of my symptoms to the triage nurse and said my doctor had told me to come in. It was pretty clear that whatever my doctor had told them was worrisome, when they figured out i’d finally shown up (it was somewhere around 8:00 pm now) a team of nurses came out with a wheel chair and swooped me into the first bed in the ER and started quickly explaining the basics of what was wrong (basically that I was “profoundly anemic” and at risk for internal bleeding) while they hooked me up to IVs and started lining up all the paperwork i’d need to sign to begin getting tests and meds.

About an hour later I had 3 IVs giving me various painkillers and blood products, an oxygen mask, many EKG leads, a blood pressure cuff and several other accessories to monitor my vitals – I would’ve been more freaked out if they hadn’t hit me with so much Dilauded so quickly. Even at this point my instinct was to not alarm my family by calling them and telling them I was strapped up in the ER, I still didn’t really know what was wrong other than I was anemic and my blood tests “warranted more tests.” It seems obvious now that I’d crossed the threshold where you call family but what was I going to say when I called? I’m in the ER and something might be wrong?

Because I was in such rough shape there was a nurse at my bedside watching the monitors at all times so it gave me someone to talk to and a healthy distraction – I imagine they’re quite skilled at holding someone’s attention when necessary, it certainly worked for me. Once they moved me out of the insanity and noise that was the ER to begin getting CAT scans of my organs (to make sure I wasn’t bleeding internally) I had a chance to really absorb what was going on. I still wasn’t exactly sure what to say – but they’re checking my organs for bleeding? that’s something to be alarmed about right? Dilauded or not. There were about 20 minutes where I was quietly laying in a stretcher in the hall waiting for the CAT scan techs to get ready where I decided I wanted my family to know where I was and probably have someone there with me.

The CAT scans were clear and it was somewhere close to 11:00 pm when I got back to my things in the ER (they’d taken all my stuff when they admitted me – clothes, phone, etc…) and I left messages for my mother and father. I called my brother Dylan as well who was in the middle of a shift at work that usually that ended somewhere around 1:00 am, I explained what little I knew and told him not to leave work or anything but that I wanted someone to know where I was. To my surprise and incredible relief he showed up at my bedside not 45 minutes later. I’m not sure I’d given myself a chance to freak out yet and having Dylan there allowed me to relax a little and start taking it all in.

We still didn’t really know what was wrong, only that we were waiting on a few more blood tests. While Dylan and I were talking things over a nurse came over, put a mask over mouth and walked away. At this point almost everything raised more questions and the mask was a biggie. What had changed that I needed a mask? Auto-immune something? Who isn’t talking to me? Soon after that I had the movie-esque ‘group of six doctors all standing around your bed talking to each other and no one speaking to you’ thing going on and I remember one of the doctors actually whispering “but he has blasts in his blood…” Dylan and I are just watching and listening at this point and neither one of us knows what the hell a blast is but it’s obvious that someone has figured something out and I decide I want to know about the mask. After getting a “well it’s all just precautions” answer I let it go, I’m still not entirely sure about the whole experience and I’m just trying to take it all in. Dylan can probably speak better to it but i’m high as a kite at this point because I was in so much pain when I came into the clinic. Those ER nurses play fast and loose with painkillers.

Sometime after midnight two ashen-faced doctors pulled my curtain aside, “Mr. Castaldi? We’re from Hemotology/Oncology…” All I heard was ‘Oncology.’ Again, high as a kite, but I imagine that word always has an high impact on a confused ER patient. They explained pretty quickly that the abundant presence of lymphoblasts in my blood was fairly conclusive evidence that I had some form of Leukemia – there were more tests needed to determine what type and what the treatment plan would be but they wanted to admit me immediately and begin running tests. Blood Cancer. Fuck.

Who the hell gets Leukemia? They also explained just how perfectly it mapped to all my symptoms – the transient bone pain, night sweats, anemia, everything. Once again I was so glad Dylan was there. Almost like I was glad someone else heard it so when I tried to explain it later people didn’t think I’d lost my mind. Dylan was also the one that noticed my new found allergy to Vancomycin – the second they hooked up the IV he pointed out hives crawling up my neck. I was so out of it I probably wouldn’t have noticed until my eyes and throat swelled shut.

At this point I finally had answers but hadn’t been able to reach my parents yet and didn’t really want to leave the “just got diagnosed with blood cancer” message. I managed to convince Dylan it was time for him to go home and get some rest and he made one more round of calls to my parents – against my will 🙂 – before heading out. Not sure what I would’ve done without him there, I’m glad it’s not something I’ll have to do again. By 2:00 am they’d admitted me to the HEMONC unit and my parents arrived, there wasn’t much to tell at that point other than “they’re pretty sure I have Leukemia. Sucks, huh?” It was a relief to be able to tell them the news and let them see that I was still OK, though we now know that was only the very beginning of the whole experience.

Most of what happened over the next few days is a blur – I started chemotherapy very quickly and one of the side effects is memory loss. Looking back now I’m surprised I can recall as much I have. Hopefully this is just an interesting story to you and not something you or a loved one ever has to experience for themselves. I’d welcome anyone else who has had a similar experience to send me a message, I’d be glad to post / link to your story – more information is a good thing, right?

Thanks to everyone for your love and support for both me and my family since my diagnosis – I’m constantly reminded of how lucky I really am.

– Austin

    • G3
    • February 1st, 2010 10:55pm

    Austin-What a great piece of writing! I’m so sorry that it took this subject to reveal it. I am here for you for what ever you need. I registered to donate stem cells and/or bone marrow with the Caitlin Raymond Internationl Registry.

    My sister is a cancer survivor! She was diagnosed about 20 years ago with cervical cancer. Her diagnosis seemed bleak, but she beat it into submission! You can to!

    Remember; its not the medicine that is going to cure you, its you that will cure you! Mind over cancer!

    • Katie McKain
    • February 2nd, 2010 10:05pm

    Wow, what a story…hurry up and beat this thing! I hate Storrow drive too…alwaaaaaaaaaays get lost!

    I’m praying for you often, and my prayers are from a mile high so they count more (right?), miss you man!

    • kn33ch41
    • March 7th, 2010 4:01pm

    Like G3 said, the mind is a powerful instrument. Telling you to think positively is not some nutty hoodoo voodoo pseudo-advice; it works. Be strong and overcome this.

    • Jmufla
    • March 8th, 2010 12:34am

    Hello- I just stumbled across your website from reddit… So I hope I contributed in a small part to your reddit bump 🙂
    I just wanted to wish you luck in your endeavours, I hope you will beat this eventually. You write beautifully, and for various reasons, I think I can relate to what you write…

    Without sounding creepy, I’ll be following you…

    Regards,
    J

    • Ericka
    • May 9th, 2011 9:41pm

    This writing is filled with talent, wisdom, strength and calmness. May you rest in peace.

    • Clarissa Longton
    • June 9th, 2013 5:40pm

    “”`.

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    • parman
    • December 7th, 2013 2:54pm

    What a story!!!
    I’m sorry ..I’m late Austin! But dont worry,we’ll meet soon !
    Insha ALLAH !

    • Cayla
    • February 20th, 2014 12:37pm

    HEYY!! I just found this blog after I was diagnosed with Acute Lymphocgyic Leukemia too and I was searching everywhere to find a way to learn more about chemotherepy, radition therapy and biological therapy (the treatments I need to go through) Im so glad I found this blog, Austin be strong and keep fightining!!!

    • Diana
    • April 19th, 2014 3:28pm

    Hello. My granddaughter age 13 was just diagnosed with ALL Leukemia in March 2014. I am so grateful for this story as I am trying to read everything I can to try and understand this disease and how it attacks the body. I would like to thank this young man’s parents for keeping their son’s story online for others to learn.

    • selena
    • February 27th, 2015 5:54pm

    hi I found this site after trying to look up CLL I was diagnosed yesterday with it. For the ones who don’t know what CLL is it’s chronic lymphocytic leukemia. It’s scary. I thank you for keeping this story up after your son passed away. I’ll bookmark this so I can read it over and over and remember that others have been through worse.

    • Shannon W.
    • March 6th, 2016 12:18pm

    My 23-year-old son was diagnosed with Acute Myeloid Leukemia on February 8, 2016. Thank you for keeping this blog active. I am so sorry for your loss.

    • Stephanie
    • March 25th, 2016 4:16am

    Found this blog a year after our son was diagnosed with ALL at 21. Thankyou so much for keeping it up. Our son has had an admission free nine months but now is sadly becoming ill again.
    Bless you.

    • marcia lamb
    • May 15th, 2016 3:08pm

    Just diagnosed with Leukemia…don’t know what to expect…everything that was said is exactly how I feel..I do have an oncologists appt.soon.

    • Debbie
    • May 6th, 2017 1:58pm

    Had blood work done. Neutrophil is low 37%, lymphocyte is high 51 % been sick since oct.
    One virus or another. My dr. Hasnt responding yet.
    Just wondering if i could have leukemia
    Any thoughts.
    Sebbie

  1. January 27th, 2010
  2. October 17th, 2014