Updates

  • I’ve added a page which explains how I came to be diagnosed with ALL. It seemed appropriate.
  • My good friend Stephanie is participating in the Mooseman Triathlon, a 32 mile swim/bike/run, on June 5 (her birthday!) as a member of The Leukemia & Lymphoma Society’s (LLS) Team In Training. She became involved after my diagnosis and is training in my name – I couldn’t possibly be more touched by what she’s doing. LLS has been an incredible resource for me since I was diagnosed and they continue to make huge strides in building a community focused on fighting blood cancers. I’ve included a link to her fundraising page, anything you can do to support her is greatly appreciated. 32 miles!
  • I received a wonderful package of snowflakes – “a taste of the outdoors” ūüôā – from Carly Therkelsen and family today to brighten up my room. My mother likes to point out how patently unwilling I was to decorate my hospital room in the beginning, I protested that I wasn’t “moving in” and didn’t need to make the place too comfortable. It really does make a difference though, i’ll have to post some pictures of the other wonderful things my friends and family have sent. Thanks Therkelsens!

Withdrawal

One of the stranger symptoms I experienced from Leukemia before I began treatment was¬†night sweats. I never really understood how or why my body would choose to sweat so profusely and only when I was trying to get some sleep. After my diagnosis I found out it’s a big red flag that can indicate blood cancers (among other things, but nothing else all that applicative to a 23-year-old male). So over the last two nights when the night sweats returned in force it freaked me out a little bit – maybe it was evidence that the chemotherapy wasn’t killing off the cancer cells as efficiently as I hoped? Why else would symptoms I experienced while the cancer was ravaging my marrow return all of a sudden?

I was so focused on this one symptom that I didn’t really notice I had diffuse pains, trouble sleeping, fatigue and had developed a¬†noticeable¬†case of ‘the shakes’ as well – all of which fits¬†remarkably well with opiate¬†withdrawal! I’ve got to be one of only a handful of people ever excited to find out they’re going through withdrawal. The fact that it took me more than a day to figure it out speaks to how¬†manageable¬†it is and the alternative of my cancer reasserting itself would’ve sucked. The best part is as long as I don’t suddenly need morphine again everything should clear up in another day or two. Its a comforting and rare thing lately to understand what my body is doing, why and when it will stop – compared to cancer and reactions to chemotherapy, withdrawal is a fairly straightforward thing to get your head around.

– Austin

IV Free!

No IVs baby! Now that I’ve given up the morphine I currently have no IV meds between a 10:00 pm dose of Meropenem and a 6:00 am dose of Doxycycline. I convinced my RN that the best way to keep me from yanking this catheter out of my neck in my sleep was to simply unhook me. Awesome. I watched a whole episode of The Office just walking aimlessly around the furniture and tight spaces in my room that the stupid IV pole usually precludes me from doing. Twice in the last hour I stood up and grabbed the pole only to realize all over again that i’m not chained to it anymore.¬†It’s still a little unsettling that I don’t walk anymore as much as shuffle. My legs have forgotten how to do their job effectively after what seems like such a short time of being¬†inactive.

It’s¬†occurred¬†to me that I have a good chance of sleeping through the 6:00 am administration of Doxycycline, I may wake up already re-tethered. Still, totally worth it.

Side note – to the brazil nuts in Planters mixed nuts: I’m sorry to say I won’t be eating you anymore – I’m just not all that impressed. I know I’ve been eating you along with all the other nuts up until now but I didn’t want to hurt your feelings. You’re so big with so little flavor, it just doesn’t seem like you’re bringing your A-game. I wish you luck in all your future endeavors, but I’ll be throwing you out from now on.

– Austin

PCA

I had my patient controlled analgesia removed today. Mine came in the form of a constant morphine drip hooked up to the central line in my neck. Imagine a syringe the size of your forearm brimming with painkiller, the thing was a little intimidating. It would provide a constant background dose of morphine to keep my pain controlled while I was asleep and also had a button I could press to deliver more morphine if I needed it.

I lost count but think it’s been around 10 days since they hooked me up, originally because I’d developed a nasty case of Mucositis – a common side effect from chemotherapy. Essentially all of the skin covering any mucus membrane in your body just sloughs off. When it began for me I noticed a bit of a sore throat and within 6 hours I was very¬†conscious of exactly where every mucus membrane in my body was – think sinuses, mouth, throat, stomach, GI tract, etc… I was lucky enough to never develop any mouth sores, most of the irritation was in my sinuses and throat. I say lucky but for several days even with healthy¬†doses of cocktails of painkillers I was unable to even swallow, never mind eat¬†anything. When you’re already fatigued and sapped for energy from not eating due to¬†nausea¬†– physically not being able to eat when you have the will is a serious morale killer.

So I was psyched this morning to finally ask to have the pump removed. I’ve gone two days with barely a button-push over the base level morphine it was providing me and given I have nothing else to fixate on medically at the moment it was the next step in my mental transition away from sick towards healthy. With most of the day to detox now i’m¬†realizing¬†how many little aches and pains the morphine was masking but it’s nice to know that I’m actually feeling whats going in my body now. After 10 days of constant morphine you begin to wonder (and freak out a little bit) about coming off it and what your body is going to feel like again. It was such an incredible¬†relief¬†to get it hooked up in the first place, the pain from the mucositis dominated every second of my life and the pump meant I didn’t have to explain every hour that i’d like some more morphine now please (not that anyone ever said no).

-Austin

Blood Products

For several days I’ve been lucky to be one of the uninteresting patients on the HEMONC unit, all my blood counts have been either stable or trending upwards and many of my symptoms / chemo side-effects have been clearing up. It’s been in every way a good thing but on some level it’s a little more frustrating being here when you feel like you’re getting closer the healthy. I’ve found having to simply wait through the days without any new medical developments (as fantastic as it may be) can actually be pretty difficult. When things change or go wrong it gives me something to fixate on – I can obsess over whatever short-term obstacle is in front of me. I didn’t realize just how much of a welcome distraction the changing nature of the disease was until it cut it out for a few days.

One must be careful what they wish for – my Leukemia must’ve been listening because in the last few hours I became ‘interesting’ again. Ever since I came in the ER they’ve watched my blood counts very closely, the reason the Leukemia made me so sick to begin with was my bone marrow was so preoccupied producing lymphoblasts (cancer cells, very immature white blood cells) that it basically stopped producing everything else I needed to stay alive – red blood cells, healthy white blood cells, platelets, etc… The doctors liked to explain that I had “a fourth of the amount of blood one would expect to find” along with so few platelets that it was a miracle my body hadn’t begun spontaneously bleeding internally.

Needless to say one of the first things they did was begin to give me transfusions of blood products, all the things that my bone marrow was no longer able to produce on it’s own. It’s a strange thing to understand that your body has simply given up on doing what it needs to in order to stay alive. Even stranger that the only way I was going to get any blood back in my body was to siphon it from someone else, repeatedly. Thanks to all of you who regularly give blood, I’ve been in a unique position to appreciate your contribution lately.

One of the stranger things to get my head around once my chemotherapy started was the fact that it’s essentially designed to kill my bone marrow. Granted my marrow isn’t exactly doing what it’s told but killing it seemed harsh – I mean damn, I need that, right? The chemo has no way of differentiating between whatever tiny bit of productive marrow I have and the vast majority of the rest which is killing me, the hope is that during the course of treatment the healthy parts can begin to take hold while the chemo effectively kills everything that’s busy producing lymphoblasts.

For almost a week now I’ve not received any transfusions of blood products (with one notable exception which was chalked up to a faulty blood draw), something I’ve decided to take as good evidence that at least something productive is happening with the good marrow I do have laying around. My blood is taken three times a day and processed in the lab so any change in my counts can be¬†immediately¬†corrected. Even though my numbers may be trending upward for a HEMONC patient, I’m still so incredibly close to rock bottom that any change is a big deal and needs to be dealt with. Easy to forget when you’re having good days.

This evening my usual midnight blood draw showed a sudden drop in my¬†hematocrit – a measure of the amount of red blood in my system. Just another reminder that my marrow is simply not clear on the subject yet – I freaking need red blood cells dude. Well the midnight draw is usually processed by 2:00 am, so at 2:15 am all the doctors on call want to make sure i’m not bleeding out somewhere (a reasonable¬†explanation¬†for such a large, sudden drop in the amount of red blood in my system). I’ve gotten pretty good at sleeping around the midnight draws but I have yet to sleep through repeated physical exams. So here I am at 5:00 am psyched up waiting for more substitute blood.

For those who’ve never tried going without blood, when you’re really low and receive a¬†sizable¬†transfusion it’s quite the rush, your whole body just seems to wake up all of a sudden and remember it’s supposed to being doing stuff with the blood it didn’t have. I’ll just have to work out some kind of schedule next time so my counts drop before the 3:00 pm blood draw next time because this middle-of-the-night¬†excitement is not something I enjoy yet. It also kind of sucks that my marrow couldn’t maintain though I suppose I should give it credit for the past week – I am going out of my way to kill it with chemo, the fact that it’s still doing anything at all (other than producing cancer cells) is fantastic.

Again – to all of you who donate blood, platelets, plasma and the rest: thanks!

Austin

Day 28

So, I’ve started a blog. I’ve been blessed with a lift of the chemo fog over the past 24 hours or so and I’ve been itching for an outlet for my new found energy. For weeks I’ve been unable to focus long enough to enjoy a TV show – never mind pursue anything resembling productive human activity. As an added bonus several of the drugs I’m currently taking are powerful amnesiacs and there are large swaths of time I simply can’t recall since my treatment began. I’ve found with Leukemia my situation can change very quickly and if I find myself mentally or¬†physically hobbled, some record of the good days might be nice to have around.

With any luck this will also provide a little insight into my new life for those close to me. Before I was diagnosed I considered myself a private person in my day-to-day life, almost a month into treatment I’m not sure thats changed all that much. I find it difficult to ¬†communicate a lot of what I experience and feel to those outside my immediate family (who is here with me every single day) and I don’t want that to eventually translate into distance between myself and my friends. One of the only things which is certain about the future of my disease and recovery is that it will be a very long road, the earlier I can learn to adjust the better.

Mostly though I’ve just been locked on the¬†Hematology/Oncology (HEMONC) unit for 28 days. It’s profoundly (understandably) sheltered from the outside world and with my fatigue and lack of focus it’s easy to feel like I’ve fallen off the edge of the earth somewhere. I’m just psyched to be able to string a few sentences together right now. I’ve managed to settle into a fairly comfortable routine and on some level that bothers me. For one there’s a catheter hanging out of my jugular with 3 IV lines to deliver meds and draw blood. For some reason this no longer bothers me all that much. It looks exactly how it sounds too, there’s just a hole in my neck.

It’s these kinds of things that are just hard to bring up in passing conversation – yet this is pretty much what my days consist of at this point. We’ll see if this is the healthy way to get it all out. I had what I thought was a really fun rant on male nurses but I lost it somewhere around last night before I could write it down. Some things haven’t changed all that much.

Thanks to everyone who’s been there to support me and my family through this so far. It’s hard to respond appropriately to everyone though that doesn’t mean it’s not appreciated. One of the upsides of this whole experience has been the incredible outpouring or support from friends and family, not a day goes by when I’m not reminded of how lucky I really am. It may sound odd but you really have to experience it for yourself (don’t though).

– Austin