New Skin

It’s been a while since my last post – Since then I’ve undergone one more cycle of the high-dose methotrexate and was re-admitted this morning for a third and final round.  The chemotherapy hasn’t been too bad aside from some nausea for a few days after the dose but the constant back-and-forth of being discharged and then re-admitted only days is getting to me. This earth-shattering headache I’ve been fighting is just starting to clear up now to my incredible relief.

The medicine isn’t even all that interesting right now, my future is (roughly) as follows:

  • Today – final dose of too much methotrexate
  • ~ Thursday – discharged
  • ~ March 19 – admitted to begin total body irradiation
  • ~ March 24 – transplant
  • Next 6 Mo. – recover

About two weeks after I was diagnosed it hit home that this disease might kill me. The thought of one day trying to draw a breath and not being able to terrified me, I was angry at the world for forcing me to confront my own mortality like this and I felt completely empty and hopeless. Thankfully after a day or two these feelings passed, I’ve since learned more about my disease so that I feel I understand the risk it poses to my health. Besides, it may sound arrogant but I don’t really plan on dying, not yet anyway.

Since then I’ve held things together by focusing on the problems ahead of me, the next deadline, anything to give me a goal I can work towards.  When I went home on Feb 15. I was alone with my thoughts in a way I hadn’t been since my diagnosis. I had a piece of my life back – my apartment, my clothes, my car, my stuff – But it didn’t feel like I was home. It felt like everything had changed, like some shade of color had drained out of my life and I couldn’t quite put my finger on what it was. It wasn’t comfortable and it wasn’t home.

After spending so much time in the hospital you expect a wave of relief when you get to go home – and while I was relieved, it didn’t last. As much as I was angry at the cancer for forcing me to confront my mortality before I planned on it, being home it forced me to evaluate what I really have left in my life. what if I don’t die? What life do I have to pick back up? Now that I’m 23 and most likely infertile I can tell you how much I’ve always wanted a little girl. In the last 6-months I ended a long-term relationship with a girl who I planned on marrying. I sank my entire sense of self-worth into my job which i’m not even physically capable of doing right now. What exactly did I want to come home to so badly?

I hate this cancer for forcing me, at 23-years-old, to miss the daughter I may never have.

– Austin

Home Again

Probably. I may be getting a little ahead of myself but I like to think by now I’m getting pretty good at the whole hospital thing. The only thing keeping me an inpatient is that my body has to clear the toxic amount of methotrexate in my system. The conversation went like this:

Me: “So if my 6pm labs come back wih methotrexate levels below .1, I’m good to go?”

Doctors: “Well, we’ll have to check the protocols to see which applies to your case but it’s possible…”

Yeah, I’m going home baby. Oh, and after that conversation my methotrexate levels came back at .02 – so maybe I’m not so clairvoyant. That and my nurse on the night shift said she was getting discharge papers ready.

When I was admitted they gave me approximately five days to go through treatment and be discharged. I spent five days not getting treated because of other complications, then only two days actually receiving chemotherapy. I get the opportunity to repeat this stage of treatment after my next admission (however soon that may be) so at least now I know my kidneys were forged by the gods themselves and have a penchant for tasty methotrexate.

“I want to be in another place”

– Austin

Vit-mins

One of the downsides of high dose methotrexate is I can’t eat anything with vitamin C or citric acid in it. Vitamin C actually increases the toxicity of the drug and for some reason citric acid can interfere with my body’s ability to clear the drug from my system. I had gotten pretty good with the neutropenic diet restrictions when my immune system was next to non-existent but I can’t even eat ketchup now. no carbonated beverages, no fruit, almost no vegetables and no brussel sprouts! what will I do??

Now that I’ve gotten my dose I get to just hang out, be nauseous and throw up. oh, and not eat – I’m losing an average of 3 lbs a day. The leukemia diet works wonders though i’m not entirely convinced I’d recommend it just yet. it’s unclear if any of it is fat or if it’s just my muscles wasting away.

On a happier note I woke up this morning without a headache! The hell-spawn that was running rampant through my brain has been quieted, I’m almost afraid to get too excited in case it returns. It’d be nice If I could’ve overcome it before the nausea but whose complaining? This way I should be able to go home side-effect free unless mucositis rears it’s ugly head from the methotrexate. I also started Leucovorin today, the rescue drug that’ll help wipe the methotrexate from my circulatory system – we’ll see how that goes. They take the levels in my blood each day ad the have certain goals I have to meet each day to stay on track – It’s designed perfectly for me to obsess over then freak out when I miss a benchmark.

my SEO efforts with the blog seem to be going well – thanks to everyone who dropped a shameless link on Facebook, I got a big bump in traffic yesterday. (numbers always suck on the weekends though):

“Pardon me while I burn”

Song: Pardon me
Album: Make Yourself
Artist: Incubus

– Austin

High-Dose Methotrexate

Finally got my next Chemotherapy phase started today with a whopping dose of methotrexate – can you guess which IV it’s in? Turns out the generic version is sold under the name “Mountain Dew.” Several of these chemotherapy drugs are florescent yellow, red, blue (i haven’t had the privilege of blue yet) – I’ve decided it’s either to keep patients distracted while you poison them or it’s a warning to predators like those poisonous tree frogs.

So EAT ME

Mmm... Poison tree frog... *drool*

Tree frogs aside, it’s nice to finally get my chemo on. I spent all week doing everything I could to get my body ready to start this chemotherapy run and then when I’m watching the nurse don her space suit to protect her from whats about to be dropped into my circulatory system over two hours, I remembered how much I don’t like chemo. I can’t imagine i’m the first cancer patient to have mixed feelings about their treatment. Despite it saving my life and being kind enough to keep me on the fairly non-reactive end of the side-effects, I’m just not sure I’ll ever learn to love it – or stop calling it poison. I received one of the drugs I’ll be taking long-term (Gleevec) at home when I was discharged – aside from the fact that it came with a $4,250 bill I’ll never have to pay (thats 30 pills people, a one month supply), It came in a huge bio hazard bag with CYTOTOXIC written all over it. my cancer meds are poison.

Though you’d never believe it, I received copies of the consents for the stem cell transplant today that make that seem tame – a few highlights:

from Complications After Transplant –

“For up to the first year or longer following discharge from the hospital, the immune system of patients undergoing allogeneic transplant remains abnormal for on year or longer… secondary cancers such as leukemia and abnormal changes in the bone marrow can arise”

from Other Serious Risks –

“Myelodysplasia (MDS), a serious blood disease that can lead to chronic anemia requiring transfusions, chronic low white blood cell count that can lead to increased risk of infection, chronic low platelets requiring transfusions and increased risk of bleeding. MDS can also lead to a life threating form of leukemia.”

For those who missed it – potential complications include LEUKEMIA. It boggles the mind. And even if you don’t get leukemia from your leukemia treatment, MDS sounds uncomfortably close to the real deal. Consents are scary by definition and some of whats listed is because four people in the history of the world ever developed a certain reaction or side-effect. Once you’ve signed enough of these that list “grievous and severe bodily harm” right above “death,” for better or worse it begins to lose it’s impact.

For a lack of better words – this transplant is going to suck – then it’s going to be awesome. Again, not entirely sure how to address the mixed feelings this disease seems so good at producing. Luckily at this point the choices to be made are fairly clear-cut so my feelings on the subject are not all that important to the decision making process.

Wait – did I just say my opinion doesn’t matter? I hope none of my doctors ever find this site (for about seven different reasons) .

“Feed my will to feel this moment urging me to cross the line.
Reaching out to embrace the random.
Reaching out to embrace whatever may come.”

Song: Lateralus
Album: Lateralus
Artist: Tool

– Austin

Theories

I try not to sound like a broken record in these posts but I fear I may be failing in that endeavor. My back pain is clearing up by leaps and bounds on it’s own without anything approaching a reasonable explanation as to what it was or why it’s getting better. Fine, whatever – I’m always going to blame it on the whole spine / needle ‘thing’ but that’s just me. I spent three days getting progressively angrier at one of my attending’s for bringing up a potential diagnosis for my headache (which can now safely be classified as “debilitating”) that I was convinced was simply impossible. It would seem now she could be right (could) and I all I have to say is this is just more proof I am, in fact, not a doctor. I’m OK with that.

When I spiked a low grade fever the other day the knee jerk reaction was to flood my system with antibiotics – a typical move and probably not an unwise one given the danger an infection poses to my health at this point in my treatment. Today my doctors discontinued the antibiotics, in one doctor’s words “to see if you get an infection or temperature again.” Not my favorite way to play trial-and-error but I suppose it will do. My temperatures over the course of today have been

  1. 97.2°
  2. 98.0°
  3. 98.5°
  4. 99.8°

Soooo, #@%! Another temp would mean at least another 2-day delay and I could have a dangerous infection to boot. At this point I’ve become so profoundly damaged all on my own and in just a matter of days – I think my doctors are becoming apprehensive about treating me until i’m fully healthy for fear the chemotherapy might somehow destroy my fragile body. Or maybe that’s just evidence of how dramatic I am lately… more than usual anyway. I’m just tired of feeling like I’m prolonging the amount of time this is going to take since I take great comfort from having the future planned out and knowing I have milestones to hit on a certain date. so far I have yet to hit one deadline within even a few days of when was planned so maybe at some point I’ll learn to relax. Until then sarcasm is working pretty well for me.

“Don’t ask me man, I’m just a working girl – just doing what I’m told”

– Aus

Back to Business

Alright. Tuesday morning I’m excited to get my treatment started, the doctors decided to wait one more day to let my liver enzyme numbers drop a little more. Some of the medications I’d been on can cause your liver to go haywire and I need mine in tip top shape to process all the chemotherapy i’m about the throw at it. Not 15 minutes after I wake up I have my morning vitals taken and I had a temperature of 100.6 … the cutoff for a low grade fever on this ward is 100.4 – So no treatment for at least two more days. I rock.

When you get a fever, even a low grade one, it sets of all these alarm bells and they start taking more blood (from different and interesting places) and shipping you off around the hospital for scans and tests. A well placed infection that isnt caught early will kill me, so its not entirely unwelcome. I was also complaining about my perma-headache at this point so they wanted to make sure the two weren’t related. A brain/spinal infection would be seriously bad news all on its own, but especially before I begin central nervous system chemotherapy. Just terrible timing. Luckily enough by that afternoon my temperature had dissipated, all my blood and tests had/have come back without any issues and it just wasn’t all that much of a fever in the first place.

One of the tests I got was a spinal tap (big old needle in the spine) so they could check my cerebral spinal fluid for any infection. It was fairly uneventful except for the part where they stabbed me in the spine – but all went well and I went a few hours without any complications or post-op issues. I’m sitting on the edge of my hospital bed discussing this with my parents, when they get up to leave, I go to stand up and say goodbye. Before my feet even hit the floor I feel a sharp pain right in the middle of my spine and freeze up, any movement in any direction produces the most unbelievable pain in different parts of my spine. I spent the rest of the night begging for painkillers and by 1am or so I’ve got another standing order for IV morphine whenever I need it.

Now it’s Wednesday morning and I’ve got no fever and my liver is happy as a clam – but now they won’t start treatment because I’ve got two extremely painful conditions completely encompassing the treatment area of my brain and spine and no reasonable explanation for either condition. They don’t want to beat me up with chemotherapy when i’m already hobbled and since we don’t know what’s causing any of these issues they don’t want the treatment to exacerbate my pain. totally reasonable (I’m all about not hurting Austin any more then is absolutely necessary) but at the same time frustrating, right now i’ll hopefully start this round of chemotherapy 6 days after originally planned. It seems the hospital is unwilling to let go of me just yet.

Today my back feels a little better, It still hurts to move so i’m still stuck in bed all day. With the right amount of morphine I’ve been able to go to the bathroom and take a shower without any help so at least I’m accomplishing the basics. for some reason any weight on my left heel causes me a lot of pain so now I’m a cancer patient with a limp – It’d be funny if I wasn’t in such a horrible mood. Being in pain like this doesn’t go a long way to promoting a positive attitude and good will towards others.

My headache just sucks and doesn’t respond to any painkillers, after a thorough neurology consult today it’s pretty clear no one has any idea whats going on with my head. I’ve got a progressively worsening constant headache which no one can diagnose. This worries me. So far the only thing that helps at all is laying completely flat for an extended period of time. There’s not a whole lot you can do laying flat on your back. I have my laptop contorted in interesting ways just so I can write this without my head throbbing the whole time.

So that’s most of the madness thats kept me occupied over today and yesterday. Barely even anything cancer related, It’s kind of a joke that this stuff is holding up my treatment. I’m coming to terms with the fact that my cancer is simply unconcerned with the fact that I have a schedule to keep, the delay this time around isn’t nearly as frustrating as the ones I experienced earlier during the induction phase. Stuff like this is only going to keep happening as I move through treatment so I can either let it kill me slowly from the inside out or try and live in the moment and roll with the punches.

On a lighter note – my humble blog is currently the 21st result when searching for “Leukemia Blog” on Google! Top of the third page baby! For anyone at JAZD who may read this, take note, I’m apparently an SEO god and will be happy to bestow my teachings upon you on my return 🙂 It doesnt look like i’ve gotten more then 6 click throughs from search engines to date but how often do you get to the third page of results on Google? Never. So i’m still hunting that elusive front page but i’m amazed at how high the site is ranked already. I suppose those two words (‘leukemia’ ‘blog’) are carpet bombed all over this site but i’m still impressed Google is all over it, perhaps it’s the relatively constant original content – and all my fantastic readers! Any links you can drop to the blog on Facebook or other sites would be greatly appreciated.

When I was admitted to the HEMONC unit one of the first things I did was have my brother pick up my laptop for me, I’d be utterly lost in here without it. Normally my life is split between two internet connections: A) My 3mbps up / 15 mbps down Comcast (I loathe them) connection at home and 2) a top-of-the-line Verizon FIOS 20mbps up / 20mbps down connection at work. Now because of these fairly robust connections I’ve come to expect a certain amount of bandwidth to burn, I’ve also gotten into the habit of running a handful of seriously network intensive applications without giving it much thought. Being in the hospital i’m relegated to a guest network (ugh..) which is some form of blasphemy for someone with the geek needs I have.

For the first few days it wasn’t a problem and I was able to pull down a good 4mbps at times, plenty to do anything I want. after the first week I believe some automated traffic shaping kicked in to deal with the fact that a single client (me) was tanking the entire network on a regular basis to run torrents and download tv shows, movies, etc.. and it cut down my share of the network to an average of about 400kbps. using a connection that slow is like drowning. when I was discharged I dropped off the network for about 6 days and when I was re-admitted I’m now on the other side of the ward and connecting to a different access point. I learned my lesson the first time and have changed my behavior as not to trigger any mom-bot traffic shaping. My average over the last three days (it’s like being born again!):

“You see a man’s face
you will never know his thoughts”

Artist: Massive Attack
Album: Mezzanine
Song: Exchange

– Austin

Pain

I’m in a terrible amount of pain – between my marathon headache which doesn’t respond to painkillers and I managed to tweak my spine somehow and for now i’m bedridden. I’m back on the morphine wagon big time. I have a lot I want to write about but just no will to do it right now. I’ll update as soon as I can.

– Austin

Up On The Roof Again

Sorry for the lapse in posts – I was discharged from the hospital early Wednesday afternoon with instructions to report back to be admitted at 8:30 am on Friday. I was overwhelmed with enjoying my time home (which I did) and never even thought to check my e-mail or write a new post. When I came in for my appointment Friday there were no beds available on the HEMONC ward (and I was a little pushy about spending the weekend at home) So they sent me home and instead I was admitted this morning to begin the next round of chemotherapy. Bonus Weekend!

Being home was unbelievably enjoyable even if it was a bit of a tease knowing I was going to be re-admitted so soon. Easily the best part about being home was sleeping in my own bed again. For those who don’t know I had pipes break in my previous apartment on several occasions during the two years I lived there (yeah, I don’t know why I stayed either) and these pipes were always in my bedroom. As a result my landlord’s insurance company was on the hook to buy me a new bed – I went all out: a Sealy, king plus, pillowtop, almost unreasonably decadent and after so long in the hospital it’s a slice of heaven. I did manage to sleep a solid 12 hours uninterrupted and it was everything I had hoped. Aside from that just the little comforts of being home again – wearing real clothes, using a shower with actual water pressure, not worrying about my central line (which they removed!), not hearing the constant beeps and sounds that hospitals are made of. Never mind my mothers cooking and spending time with my family, visits are a lot more enjoyable at my apartment instead of these hospital rooms.

At home it was easier to forget I was sick. It’s hard to lose sight of the fact that you have Leukemia while you’re in the hospital and even at home every time you struggle to stand up or notice your skin is peeling from the chemo – it’s a pretty stark reminder that something is off. But for a few hours watching TV or playing a game with my brother I would honestly forget that I’m now living with cancer. Every time I look in the mirror the bald head is a big reminder but was relaxing to not be smothered with the fact that I have a disease all the time. I’ll admit I was kind of a baby about coming back to the hospital, I was convinced I was going to want to come back and continue with my treatment after a few days at home. I was wrong.

But, here I am. Oh! I did get some of my bone marrow biopsy results back – I’m officially in remission! So thats fun. My next phase of chemotherapy is called Central Nervous System (CNS) Prophylaxis. Even though my spinal fluid and brain have been clear of cancer cells from the beginning there’s no way to guarantee that some cancer cells haven’t crossed the blood-brain barrier and taken up home inside my wonderful brain. So during this stage they’re just going to flood my brain and spinal column with chemotherapy, mostly a drug called Methotrexate which has been part of my treatment already. When I say “flood my brain and spinal column,” I mean flood. Up until now each time I received Methotrexate it was either a 12mg intrathecal injection or up to 50mg intravenously. Tomorrow morning I will receive a 7000mg intravenous injection of Methotrexate. The goal is to load my circulatory system with so much of the drug that a tiny bit of it will brute force it’s way through the blood-brain barrier and hit my brain, then after 24 hours they’ll begin treating me with Leucovorin to help flush the left over methotrexate from my circulatory system. The only reason I can’t do this phase of treatment as an outpatient is because the dosage is so toxic they need to be able to monitor me and check that my body is clearing the drug at the right rate. Sometimes the chemotherapy can be scarier than the Leukemia.

They were nice enough to remove my central line when they discharged me, It was too much of an infection risk outside of the hospital and because of the type of line and it’s placement in my jugular (a major vein) I would’ve needed an RN to come and check the line, flush it and re-dress it each day. Four days without a line was nice but they told me I needed a new one when I was admitted this morning since I’ll be beginning the high-dose Methotrexate tomorrow I’ll need at least two lines – one for the chemotherapy and the other for constant fluids, never mind any supplemental blood products or electrolytes I might need. My first procedure today was the  installation of a PICC line which is inserted on my right forearm at the inside of elbow and has a catheter that runs all the way through my vein to within 2-inches of my heart. Cool. I’m convinced the PICC line is cooler than my previous central line in almost every way, allow me to explain:

PICC line

PROs CONs
  • The install site is on my right arm, much more manageable than my throat.
  • Drastically lower risk of infection over any potential alternative line.
  • No surgery – I had the whole procedure done in my room laying in bed.
  • Now that I don’t have lines to run all the way from my neck I may be able to wear real people clothes.
  • I can take this line home with me with minimal infection risk – no more installs every time I get admitted.
  • I don’t have to look at that freaky hole in my neck anymore.
  • Only has 2 ports while my previous central line had 3.
  • Having lines hanging out your arm can get in the way typing/using a mouse.
  • There’s no real way to hide it, if/when I am an outpatient I’ll have the cancer-bald head and IVs dandling from my arm.

If you’d like to see it… You know you do.

I started writing this right after I got back from an MRI – late last night that throbbing headache which i suffered through for a solid month before being diagnosed returned with a vengeance. If you say “headache” more than once in a 30 minute span on this ward  someone will send you for a CT or MRI, they’re big on avoiding internal bleeding on the blood cancer ward. No other symptoms to go along with it (thank gawd*) but right now the solution seems to be to throw pain meds at me until I stop complaining. Not an approach I typically would argue with but after several rounds of Oxycodone and Morphine I just nodded off – woke up when my face hit the keyboard! I’m a huge fan of the HBO show The Wire and I’ve been working my way back through the series while in the hospital, I thought this was a cheap insight into what it must feel like to be Bubbles (a main character who is a Heroin addict). If you haven’t seen The Wire you’re missing out, it’s some truly life changing television if there ever was. List of the awards won by The Wire. I might be shameless but you’ll forgive me when it’s the greatest show you’ve ever seen.

* is “gawd” less blasphemous than the usual? It’s got a nice I’m-from-Boston/I-know-I-sound-like-a-ditz ring to it. I’m not in a position to be pissing anyone off involved in my potential afterlife though. Maybe they’ll think I’m funny?

“I’m up on the roof again
Watchin’ the sparklers dance and play
Up on the roof again
Please don’t take my ladder away”

Song: Up On The Roof Again
Artist: Colonel Les Claypool’s Fearless Flying Frog Brigade

– Austin

Going Home!

Yeah, surprised me too. My Absolute Neutrophil Count (ANC – a measure of the different kinds of white blood cells) spiked so sharply in the blood they took for today’s counts that I’m no longer classified as immuno-compromised and can continue my treatment as an outpatient. very exciting. The downside is that my numbers are so good my doctor wants to begin the next phase of kick-my-ass chemo on Friday, which I will be re-admitted for because it will devastate all my new found white blood cells. Chemotherapy is such an odd treatment, trying to balancing the harmful effects of the treatment with the risk of not treating the disease. One nurse told me 100 years from now we’ll look back at chemotherapy the way we think about leeches today – “I can’t believe we actually did that to those poor people!”

I gave all the marrow samples necessary to confirm I’ve beaten the cancer into remission, I should have results by Friday. They can take a week for all I care because I’m going to be waiting at home. I have a feeling after even a few days I’ll be antsy to get back to the hospital and continue my treatment. Assuming my marrow comes back clean I should have one more good round of chemotherapy and then I can start getting ready for my transplant. That’ll be another couple of months locked in a box at the hospital but I’ll be growing my little brother’s marrow inside my bones – how freaking cool is that?

I saw them transporting one of the transplant patients on the hall today and they had him on a stretcher with a mask, gloves and two layers of sheets tied down all the way up to his chin like a cocoon. The only time you’re allowed out of your room is to get irradiated or for a test – for at least a month. I discovered at least one of the rooms doesn’t have a shower, so for a month you clean yourself in the sink with a wash cloth. No thank you.

When I woke up this morning I didn’t know going home was even an option. Sweet.

– Austin

2100

The wizard has given me a thumbs up – My midnight labs came back with a plethora of white blood cells compared to my previous tests and my magic number (needs to be 1000)  jumped from 920 to 2100. My nurse mentioned I should quit giving my white blood cells a hard time because they obviously have a sense of humor about the whole thing. Today was my last chance to hit the numbers I needed and still progress with the next phase of my treatment on schedule. I’ve had worse mornings.

Update: My father does love his spreadsheets:

Now that I get to pass Go and collect my $200 I have several procedures to look forward to today – most notably a bone marrow aspirate and biopsy. From Wikipedia:

“Typically, the aspirate is performed first. An aspirate needle is inserted through the skin until it abuts the bone. Then, with a twisting motion, the needle is advanced through the bony cortex (the hard outer layer of the bone) and into the marrow cavity. Once the needle is in the marrow cavity, a syringe is attached and used to aspirate (“suck out”) liquid bone marrow. A twisting motion is performed during the aspiration to avoid excess content of blood in the sample, which might be the case if an excessively large sample from one single point is taken.

Subsequently, the biopsy is performed if indicated. A different, larger trephine needle is inserted and anchored in the bony cortex. The needle is then advanced with a twisting motion and rotated to obtain a solid piece of bone marrow. This piece is then removed along with the needle. The entire procedure, once preparation is complete, typically takes 10–15 minutes.”

So far I’ve had two aspirates and biopsy in the last month. Generally they do the procedure on your hip but I’ve also had the distinct pleasure of having one performed on my sternum – big, flat bones are rich in marrow. Once you’ve had one done a few times it’s not that bad but it’s certainly no fun to anticipate. The tests were originally necessary to diagnose ALL and I’m having them re-performed now to confirm that the cancer is in remission now that I’ve completed the first phase of chemotherapy. It’s a little exciting – all my numbers and blood counts look pretty good for a Leukemia patient, all thats left is to see how much (if any) cancer is left in my marrow.

mmm… marrow…

– Austin