Waiting

I’ve been an inpatient for four weeks now. In the past I always managed to recover quickly, in a lot of cases I was up and out of the hospital days even weeks before my doctors expected. Not true this time. It may be a testament to how intense my chemotherapy was this time around. I’ve asked my immune system to recover from so many devastating treatments at this point that it’s just not able to rebound as well as it used to.

Instead of watching my counts climb, I continue to need transfusions of red blood and platelets just about every day to keep me at safe levels. My white count has been non-existant since a day or two into the chemotherapy and it’s not budging. Optimistically – The treatment damaged the cancer cells as badly as it’s messed up my system. Pessimistically – My marrow can’t recover because cancer cells are still prevalent enough to be getting in the way. No way to know until the bone marrow biopsy and no biopsy until I have some counts.

Because I still have no white count I’ve been enjoying Typhlitis for the last two weeks. the specifics aren’t too interesting but the summary is: my intestines are inflamed and very painful and it keeps me nauseous almost constantly. Initially I was not even allowed to drink water in order to give my digestive tract rest. Thankfully my doctor took pity on me after a day and let me have clear liquids (water, jello, broth). You have no idea what a morale crusher it is when your doctor says you can’t drink a glass of water.

A few days after that I was upgraded to a “mechanical soft” diet which is where I remain today. I haven’t investigated (and won’t) but I think they essentially puree your food so you can drink it through a straw. I’ve survived on pudding, yogurt and my mother’s unbelievably tasty thick soups. The last few days though the typhlitis has flared up meaning more pain and more nausea. I’ve been forcing myself to eat at least a yogurt each day – 14g of protein and 20g of carbs. I figured out the other day that at my current weight, i’ve lost 70lbs since my diagnosis.

The amount of pain medication I need to take each day to dull my organ-throbbing aches puts me in a serious fog and (get this) makes me pretty nauseous to boot. Every time my head starts to clear a little bit and I feel ‘steady’ again it’s joined by a slow creep of the pain in my gut. I do have to give my doctors credit though, the medication does control the pain to the point where I can still shower, write when I can and sleep pretty well. For all the difficulties, my night sweats miraculously disappeared a few nights ago which is a blessing.

I have to mention my good friend Doug who has joined the Leukemia and Lymphoma Society’s Team In Training and while be biking 100 miles to support blood cancer research. He’s off to a great start training and any support you can provide would be appreciated.

Doug’s TNT page

 

- Austin

    • Anonymous
    • April 15th, 2011 2:40pm

    thanks for the update Castaldi :)

    • Jennie
    • April 15th, 2011 3:05pm

    Love you!

    • lily
    • April 17th, 2011 12:11pm

    You are strong.

    • Steven
    • April 17th, 2011 2:07pm

    I had those night sweats too. I know its hard not to think the worst when it always is the worst, but for me I noticed my night sweats usually coincided with infection or resulted from taking paracetamol to reduce the fever. Could be a result of your Typhlitis? maybe its a sign that you’re getting over the infection and thats why the sweats have stopped?

    As for the immuno-suppression? I’d roll with the optimism – my neutrophils didnt recover above 1.0 for 5 weeks after my second round of induction (UKALL). For at least 3 of those weeks it was between 0.00 and 0.02

    I finish 3.5 years of treatment this week. May never seem like you’ll get there but keep the faith – im not religious, i mean keep the faith in yourself.

    • John
    • April 22nd, 2011 11:43pm

    Hey Austin, I just stumbled on your profile via linkedin, not sure if you remember me, I worked at Jazd for a few months in the summer of “09″. I read a lot of your blog today and am inspired by your courage and had no idea of the daily struggle and battle you are going through. I never had a chance to say good-bye to when I left but really enjoyed working with you and I know whoever hires you when you are ready to get back to work will be extremely lucky to have you. Keep up the fight Austin, I hope the days of eating some quality solid food are soon to come :)

    -John

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