Delay

So after all that I never had my procedures done yesterday – My numbers are right on the cusp for meeting the criterion for remission and they don’t want to have to redo painful procedures if my blood counts dip a little (which they often do) before the bone marrow results come back. In the drug trial I have a three day window starting yesterday to get the tests done and still move forward on the same schedule. It still doesn’t sound like they expect any issues, they’re just hedging their bets – my counts will probably be better in a day or two so why not wait? It’s the weekend anyway, I wouldn’t get the results back any sooner had they done it yesterday.

I’m not sure why I’m so anxious to have it done, there’s no pleasant way to collect bone marrow and once it’s done they’re going to give me intrathecal chemotherapy as well. Not exactly something to look forward to, then I just get to be ill again and wait a few more days for the results to come back. I suppose it’s just frustrating not knowing when it will happen until the doctors walk in the door and say “maybe tomorrow, we’ll see…” I’ve been here 34 days now and my primary physician said the word ‘outpatient’ for the first time the other day. I’d consigned myself to the fact that if I’m lucky enough to go straight to transplant the very earliest I’d step foot outside this hospital was sometime in April. The prospect of even a week at home sleeping in my bed and spending time with my family is intoxicating. But, this is me not obsessing over it – can you tell?

I did take my very last dose of Prednisone yesterday at 2pm which should make for an interesting next few days. Pred is a corticosteroid which I’ve been on super-high doses of twice a day since I arrived to suppress my immune system so we can kill it with chemo. There are a lot of pain-in-the-ass side effects (like causing drug-induced diabetes for one) but it also gives you a ton of energy, improves your mood, can help with focus and concentration, gives you an incredible appetite and can cause sustained euphoria. The problem is after only a couple days of such high doses your body just gives up on making it’s own corticosteroids – your adrenal gland shuts down because someone else is doing all the work for it. So today at 7:00 am (now?) when I don’t take my usual dose my body is going to begin to lose all these wonderful corticosteroids I’ve been pumping into it and it’ll take a little while for my adrenal gland to wake up again. I won’t be diabetic anymore and I should be able to sleep better but I’ll probably want to rip someone’s face off if they look at me the wrong way too.

Even if it’s slower than I’d like it’s all still progress. God knows it could probably never happen fast enough to satisfy me. I’ve got to remember this is only the very beginning of a long course of treatment (if not for the rest of my life) which is guaranteed to suck so very badly at points – I should be grateful for all the ways it’s going well at the moment.

On that note I’ve received a lot of positive feedback about the blog since I’ve started – I’m glad people are enjoying it. It’s been a very cathartic experience trying to get some of my thoughts about my treatment and disease written down, even if it’s a bit more exposure than I’m used to. One of the most helpful things for me when I was first diagnosed was reading blogs from other individuals (sadly most have since succumbed to ALL) who wrote about their day-to-day experiences with the hospital, chemotherapy, etc… Hopefully I’ll have the opportunity to help make someone else’s scary-as-all-hell diagnosis experience more understandable and give a little insight into how I learned to live with the disease. Because that’s exactly what I plan on doing.

– Austin

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