[11-29-08] Any Aces?

[10:30pm]
     In two days I will return to Stanford for a follow-up appointment. I will arrive at 1pm, get my labs and x-rays, and wait until 3pm for my clinic appointment. It feels like a "return" of some sort... like I've been on a vacation from all this cancer stuff lately. I don't want to return...

     I've been getting established in my new home... organizing my life and slowly putting the wheels back on the track. I got a new desk today and I totally love it. I've been spending my day casually setting up my computer and getting my equipment on-line. Everything is getting back in order and I don't want anything to get in the way of that. It's nice to be home... it's nice to no longer be a nomad.

     I've been thinking about the purpose of future bone marrow biopsies and CT scans. I almost want to skip all that and assume the cancer is completely cured. Ignorance is bliss and all that. If you think about it, it's a win-win situation: 1> Cancer stays away and I don't have to worry about it, or 2> Cancer returns and shortens my life-span, but I had a carefree existence.
     For treatment to swallow up the last time one has... is a very sad thing.
     Of course, there are also plenty of people out there who have stuck with treatment despite the odds and have beaten the big C.

     It's a gamble: enjoy your remaining time or fight and suffer for the chance of more time.

     Now I know these thoughts should be the furthest from my mind, but to consider ignoring the advice of experienced doctors... it requires one to check the odds and evaluate the deck.

     I know they want to keep giving me bone marrow biopsies to "re-stage" my lymphoma, but I feel that doesn't really make sense if I am only stage I. If it progresses to stage II, then fine... but to go from stage I to the marrow... seems unlikely.
     In other words, I am fine with the doctors assuming that the cancer isn't in the marrow. They can call me Stage I?. For the pleasure of never being subjected to that amount of pain again... I am fine with that.

     Also, they may me to go to Stanford for the radiation part of my treatment. I also don't see the point... why not go to the local oncologist for that? I'm not about to sacrifice my next semester of school just because a doctor is uncomfortable coordinating with an unknown radiation oncologist in Berkeley.
     For that matter, I'm not about to let anything interfere in my next semester, cancer be damned!

[11-27-08] Turkey Day!

[6:11pm]
     I had beers last night... it was good. My rebelliousness and desire for normalcy has overruled my obedience, caution, and a little bit of my prudence. But that's OK -- cause I had beers last night, and it was good!
     Also, Dan reported that the SF Oncology Group had no problem with a few beers a few days after the end of chemo. So I'm not really being foolish.
     The truth is: I'm aware of my body and it's limitations, blah, blah, blah... I mean, today I went to storage and loaded all of my possessions into a truck... I think that demonstration of stamina and strength means something.

     Anyhow, the big story is that I am HOME! Yup, right now, I am clicking away on my computer as Liz is cooking me a Thanksgiving dinner at our house in Berkeley! How awesome is that?
     Moving in on Thanksgiving Day... what a way to feel at home. I'm happy :)

     Anyhow, I have to prepare the corn now! Happy Turkey Day, everyone!

[11-25-08] Out

[5:15pm]
     I am out. Instead of 2-3 weeks of living next to the Stanford hospital, I have been released after only a week. Right now, I am typing these words at my sister's house. Tomorrow I gather my belongings and move to Berkeley... to home. I've been a nomad since the beginning of September, and it is quite nice to finally be able to drop anchor.
     Now I can finally start picking up the pieces and get back on track. True, there's probably radiation down the road... but the hard part is over now. What matters is that I'll be able to remain in school while undergoing radiation. Moving forward in life.

     On a completely different subject...

     They say I can take my mask off after ten days... and I think to myself: what if I take it off now? All my other limitations seems to have been based on strict "guidelines" that were later relaxed. Perhaps, through almost a year of these treatments, I have learned the limitations of my own body. Perhaps I am qualified to make my own judgments on the matter.
     The truth is: I am just tired. I am done making exceptions and limiting my life experiences due to this cancer. I need to return to normal.
     And if someone tried to impose one of those limitations... well, maybe I just wont let them. For example, I am supposed to get a bone marrow biopsy 3 months from day 0, then 6 months, then once a year for at least five years. Maybe I just wont permit them. What are they going to do: send me to prison? Plus, once the cancer is in my marrow, aren't I automatically Stage IV? Perhaps it's better not to know if it's in the marrow.
     It's one of the ways I've been changed through all of this: I am perhaps a bit more sefish and defiant. Life is short and I am going to minimize any suffering. If I have a choice, I am going to do things my way!

[11-23-08] Almost Normal

[4:10pm]
     Blog. Blog, blog blog, blog blog blog blog. Blog? Blog.

     Good news! I get to leave the Stanford area on Tuesday! Apparently, my counts and whatnot are so good that I only need monitoring or whatever for one week instead of two. So I get to see my family and new home in Berkeley quite a lot sooner than anticipated!
     In addition, typically patients that have graduated from the "BMT ward" to "Cancer Clinic" no longer have to wear their masks in most situations. So, I could automatically infer that I will no longer have to wear my mask after Tuesday (which I will).

     More good news! The mouth pain has gotten considerably better and I am capable of prolonged conversation and the careful consumption of solid foods! Unfortunately, most solid foods taste terrible! Chemo has not affected my taste buds in the past, but, at present, it is ridiculous! In addition, my skin is healing and my energy levels are steadily rising. Also, sleep is getting better and my quality of life is improving rapidly.

     In other words, things are great and getting better. It looks like I've officially survived the BMT. Now, the question of radiation...

     Bah, I'll think of that later... As for now, I'm going to watch a bunch of movies with Liz until the new episode of 24 comes out. :P

[11-21-08] Ducks

[1:33pm]
     I definitely like the recovery phase much more than the treatment phase: getting better each day is far more agreeable than getting worse each day, no matter the initial conditions.
     It feels silly to say something so obvious, but I love feeling better -- I want this to continue more rapidly; I want to facilitate this. I want to run! I want to be in better shape than I was pre-BMT. Accordingly, I've decided to push myself harder and get some exercise. So, I got out today and went for a walk.
     The physical therapist recommended a walk of 20-30 minutes a day, but since I was new to all this, my target time was 20 minutes. I think there's some rules about being around a caregiver at all times while outside the home or something, but I figured that if I made a bee-line from here to the hospital that no one could really complain. I mean, what can they say? "What if you collapsed all by yourself?" Then I'd say, "Yeah, I'd collapse in a hospital -- that'd be real bad."
     The worst part about all this is that I had to put on my stupid HEPA-mask. Let me tell you, there is nothing worse than a runny nose while wearing one of those. Then there's the people looking at you strangely as you pass them... Now, I could lie to everyone and say that I don't care what people think of me, but that's not entirely true. I could say that I defiantly glare at those staring at the man in the mask, but that's not true either. On the other hand, I don't sheepishly avert my eyes either -- I'm certainly not ashamed about all this. The truth is in the middle ground: I don't care what random strangers think of me... as long as I don't notice it. So, my strategy: Look where you'd normally look; act how you'd normally act, but when you get the feeling that you're being stared at and you're about to make eye contact... just defocus your eyes. :P
     There was this kid that was running gleefully in front of his parents. As he approached me, he stopped dead in his tracks. He looked at me, then looked at his parents, then looked at me again. He simply stood there, waiting for his parents, unsure how to proceed in front of this strange person with a strange mask. Some defocusing was helpful there...
     Other than that, I was too distracted by the world around me to even consider people's reactions. I remember seeing a little finch on the side of the sidewalk, and thinking to myself: "I want to be as free as this bird from now on; I'll never be hospitalized again." And I looked at the trees and the plants and the nature and all the good outdoorsy stuff. I felt happy, and I thought to myself, "As much as I don't like the effort and difficulty of getting outside and going for a walk, I'm glad I did. That seems like a lesson I keep learning: life is about the journey, not the destination. I need to hit the textbooks." Then I stopped by the fountain at the main entrance to the hospital and watched the ducks...

     From a distance, it looks like a fountain, but upon closer inspection, you learn that it is really a duck playground. There's the larger fountains shooting water that the ducks like to hide under, and there's the smaller fountains that the ducks like to sip from or clean themselves with, and there's these little islands with plants to conceal the ducks when they feel like hiding from the world.
     Then I saw these two ducks playfighting with each other. They were relentless! Both ducks would bite each other's legs and they would swim in furious circles like a dog chasing its own tail. Then they would break apart, but you could always see this particular pair eyeing each other across the water. One would swim a little closer, and the other would veer away or pretend not to notice. And, suddenly, one of the two will furiously attack the other. This would repeat over and over again.
     And I stood there, just laughing and smiling at the ducks... with my sounds of joy somewhat muffled by the mask, but not prevented in the slightest. I'm going to go see those ducks every day.

[11-20-08] Returning to the real world

[9:29am]
     Here I am, sitting in the good 'ol ITA (Infusion Treatment Area). It makes me feel like I've come full circle: Cancer Center (Stanford V) -> Hospital (ICE) -> Cancer Center (Pre-BMT) -> Hospital (BMT). But that's really not the case -- it's just the next part of a new phase.

     But I'm fine with that. Well, not entirely. It's really hard not to get overwhelmed by all of this; it takes strength just to get up and do stuff. I'm sure that will change in a week or so, but it's hard to think about the future when you feel the present so much.

     Yesterday, my mom and I got established in our new little apartment. It's a compact place with all the standard necessities that you'd find in a small studio (except that the bedroom has two twin beds).
     It is a wonderful, wonderful thing to walk from one room to another! A bed in one room, and your computer in another -- how profound! There's room to pace! I am not confined! The only problem is that the bathroom has that "hospital smell" that I've learned to despise. They must use the same cleaners or something; I need to get an air freshener.

     Sleep's been really, really difficult. I have this hot/cold problem that I've just started to figure out. The problem starts like this: I am cold, so I move and adjust the blanket to cover me more. After a few seconds, this new adjustment has me way too hot, so I pull the blanket away. Rinse; Repeat.
     I believe this is because I am so pathetically out of shape. If I get up to do anything, I break a sweat and get hot. This is why I spent most of my time in the hospital shirtless -- otherwise I'd keep removing my shirt and putting it back on... a blanket it quicker.
     Anyhow, so my "thermal core" overheats when I do pretty much anything -- including a simple blanket adjustment. This is why I go from cold to hot so quickly.
     So, my new sleep strategy is two-fold: 1>Take Ambien, and 2> Make all blanket adjustments very slowly, and with a minimal amount of effort. It takes practice.
     Perhaps the best strategy is just to exercise more.

[11-19-08] Freedom (Day +16)

[1:32pm]
     On Monday, I bargained with my doctors to be let out on Wednesday. All I had to do was drink 3 liters of water a day, eat some food, and practice my breathing exercises. On Tuesday evening, after it was evident that I had fulfilled all of my promises, the doctors agreed to discharge me on Wednesday.

     So why did I not shout out with glee? Why did I keep this wonderful news to myself? Because it was something so great, that if it were to be taken from me, my heart would be broken. To never acknowledge this news is to never expect it; if I don't expect it, then its failure to come true will not disappoint.

     In other words, I feared that somehow they would take this promise of freedom away from me... and they almost did.

     Last night, I had a fever of 38.2 for slightly under an hour. They ordered some blood cultured (which take a few days to process) and took some blood samples. At this point, I was sure that I had more time on my tenure at Stanford Hospital -- I was mortified.
     Fortunately, when the doctors approached me this morning they said that I technically did not have a fever! If you have a temperature of 38.3 or above, then you have a fever. If you have a temperature of 38.2 for over an hour, then you have a fever. I just squeaked by!
     After the doctors made me promise to return if the blood cultures showed any positives, or if my fever returned, they promised me that I would get discharged today!

     All that happened about 4 hours ago, but it has not set in until now. I've been spending the day like I've been spending the past few days -- sleeping as much as I possibly can. I have no doubt that I was in a hospital-induced depression.
     Just in the past half hour or so, I have felt that fog start to lift. I look out my window and stare at the auburn trees in the wind and think: "that's freedom." Then I get filled with such a profound mix of emotions that my eyes can't help but get a bit teary. I am not an emotional guy.

     I felt the same way when my mom insisted we go out for a walk. I had spent the entire day sleeping (or tying to sleep) and I think she recognized, for the sake of my spirits, that I needed a change of venue.
     So we left the BMT ward, and she wheel-chaired me around the hospital. At one point, we came across two large doors opening the hospital to the dark outside. She asked me, "Do you want to go outside?"
     I wanted to go out more than anything in the world. "But we can't," I said.
     "Of course we can! Let 'em try to stop me," she announced.
     Out there, in the freezing night air, I felt completely happy. I felt that weird mix of strong emotions that I spoke of previously; the emotions that made me teary eyed. I wanted to never go indoors ever again. Mom asked me if I wanted to go back inside, but I told her that I wanted to wait for a few more minutes. Then the wind got the best of me, and we returned to the BMT ward.


     So here I am again, in my room, watching the gardeners do their work in the garden below. And I think to myself: "That has got to be the most wonderful job in the world." To spend all that time outside... exerting yourself... creating life. It make me want to abandon my engineering discipline for something that would keep me outdoors -- forget the difference in salary. It reminds me of the movie "Office Space," where the protagonist leaves his job in a cubicle and ultimately finds happiness in construction.

     Still, I'm sitting here thinking about my feelings... and I think I may have been expressing only half of the story. It's not that I love the outdoors, it's that I hate being trapped indoors. It's not that I love my freedom, it's that I hate losing it.
     Now, I'm not an idiot -- I very well recognize that this little hospital stay may have just saved my life. But that doesn't change the fact that, somehow, I have been wronged... and maybe I'm just shooting the messenger, but I can't help how I feel: I hate this hospital.
     Please don't think me unappreciative, but, as I said, all this dehumanizes us cancer patients. We're not at a hospital -- we're at a veterinary clinic. Now, do you think those cats and dogs appreciate their shots and rectal examinations? I bet you they hate the vet too.

     See why I can't wait to get out?

[11-18-08] The Morality of Suffering (Day +15)

[Counts]
WBC:10.3
HCT:31.8
PLT:58,000

The counts section ends here, as I'm pretty sure they'll all be good from now on.

[4:09pm]
     My mom just said, "Well, this part is almost over." She said, "... this part is almost over." This nightmarish journey has an end in sight: a different nightmarish journey.
     Ok, maybe I'm being a bit melodramatic -- the BMT hospitalization part is by far the most difficult. But I've been focusing so much on that aspect that I am so ready for it all to be done! Now I have to face the post-BMT Stanford infusion period, then the radiation period (hopefully in Berkeley area), then the life-long routine cancer testing phase (perhaps the most daunting of them all).

     It seems that the most pernicious aspect of cancer is the fact that it is not finite. Diabetes may be a life-threatening life-long disease, but everything will work out fine if it's treatment is seriously followed. With cancer, on the other hand, one has to be subjected to harsh treatments with unknown outcomes...all you can do is suffer through it and pray to whatever you find holy. Even if the outcome is favorable, and the cancer is cured, it can always come back -- it's ghost is always there to haunt you. Which would you prefer? A pill to take to keep your cancer permanently in remission? Or a chemotherapeutic agent to attempt to destroy the cancer, but can cause severe long term side effects, unhinge your life, and, of course, can return at any time. That's what I mean by not finite: there is no end.
     Taken to the other extreme, if one were to have a bullet shot through their head, then that would be it: a finite death. And that is, without question, what all cancer warriors are fighting against. But is a bullet through the head more pernicious than a few years fighting a losing battle against a cancer that has you so battle-worn that you are stripped of all identity and converted into this wounded animal? A wounded animal that no longer has the energy for witty banter with the nurses; A wounded animal that does nothing but poop, vomit, eat (if through a tube), and drink (again, if through a tube)... and all that is of concern to those around the animal is it's input(what comes in) and output (what goes out). Seems that the bullet has a greater respect for life with a smaller amount of suffering.

     So, this part is almost over. They have transferred me into a double room, which is a good sign for those looking to get out of here -- it means your counts are good enough that severe precautions are not necessary.
     As luck would have it, they transferred me into a room with a guy who was having his transplant today! I was glad for the guy, until I encountered that overwhelming stem-cell stench... the stench of poorly fried shellfish that had been left out in the sun for a few days.
     The funny part is that everyone was fine with it, except for me -- I nearly vomited 7 or 8 times. I requested some Ativan and air freshener. When they arrived, I was spraying air freshner into my face as I was getting the Ativan -- it worked, for a time.
     Fortunately, the smell goes away with time. Plus, my roommate just got discharged (a day after transplant! Why is mine so long?), so my mom and I stole his window seat. It's much nicer here.

     Truthfully, I'm getting a little depressed in this hospital. I've just been here too long; been caged up to an IV for too long -- I want my freedom; I want to go home. Been trying to sleep away the days, but that never works. All you can do is make sure you eat enough, drink enough (3L), and do their little breathing exercise thingy enough to get discharged. They say that there's a chance I'll get discharged on Wednesday, but I don't really believe that... so, it looks like Thursday. Two whole days from now.

[11-17-08] Sweet Sweetness! (Day +14)

[Counts]
WBC:20.2
HCT:30.6
PLT:46,000

[12:34pm]
     Everything has changed in an instant. In my last angsty posting, Barbara posted a comment recommending that I try a local mouth pain-relief product, such as Oraljel, to combat my persistent mouth pain. At the time, I was communicating with Liz through the computer, or a series of grunts and awkward hand gestures -- it was the best I could do.
     She saw Barbara's comment and immediately offered to drive to the nearest Walgreens to acquire said product. When she returned I applied the product and found instant relief. For the first time in what felt like forever, I was actually talking! Liz and I spend the next few hours talking about stuff -- it was a beautiful thing.

     Naturally, everything changed after that. I no longer need any pain medication (Fentanyl) and I can actually eat my meals! That is the two major things keeping me in the Hospital; now it could be as little as 48 hours before I am discharged.
     The downside is that, to leave the hospital, one needs to be better. If one is better, they no longer need a single room. So, they moved me to a double with a caregiver that, within minutes, was preventing my mom and I from watching a much anticipated episode of House. Sure, I get wanting to sleep -- 0but it's the middle of the day, when else can I watch some T.V.? With nothing much to do and a lack of sleep haunting me from last night, I decided to get some blissful sleep as well. I was forced awake with loud talking.
     But I wasn't upset; this is what happens in double rooms in hospitals. Just don't force double standards on the patients around you.
     Perhaps I'm being unreasonable, but I thought our volume level was minimal... and I was really looking forward to watching that episode. Plus, when can we watch it now? Don't they now have precedence to request that we not watch it at any time?
     Ok, excuse the rant.

     In conclusion, things are going well. I'm going to try to eat well and whatnot to get out of here soon!

[11-16-08] Sad Times (Day + 13)

[Counts]
WBC: 27.9
HCT: 26.1
Platelets: 36,000


[5:28pm]
     Too much complaining; don't read.

     I'm in a foul mood. Well, more accurately, I've been in a foul mood... for what seems like days now.
     Right now, I'm playing Runebound with Liz -- so I'm definitely happy. (She's in the lead at the moment, but we shall see...)

     Anyhow, back to negative vibes...grrrrrr.

     So, there's just been too many minor annoyances, too consistently, and for too long now. So now I have to sleep with oxygen on? Ok, no prob. So now I have to be plugged into an O2 meter at all times -- yet another thing to be unplugged when you go to the bathroom. Ok... So now I have to have my PICC line removed because you think it might be the thing causing my low fevers? Argh! Now I have to go back to IV?!?!? After all this effort getting 4 different lines installed? Plus, my veins are all in hiding now -- how are they going to find them? Poke and play?
     Then, of course, there's the myriad of side effects from the BMT. But you've heard all about those... except, I'm just about to go crazy because of this mouth pain! It's terrible! My global mouth pain is pretty much gone -- which is nice, but it didn't account for more than 10% of my mouth pain. I got this thing to the base of the left side of the tongue. It is PROFOUND how much pain can be registered in such a small space.
     So, I can't talk more than a few words at a time, and always at a cost of pain...

     I want to TALK! It's extremely frustrating to be around the people you love the most in the world and feeling like you can't have fun/be fun around them because you have to optimize your words to a caveman level. I like to employ wit and scarcasm -- I can't do that if the pain is too rough!
     Then there's sleep. I need sleep! The nurses waking you up every 30 minutes is fine; the alarms on the IV pole every 60 minutes is a bit rough (because the nurses take 10-30minutes to get there); the alarms on the O2 meter every time you need to go to the bathroom is doable... but being extremely tired, falling to blissful slumber and waking up in under 5 minutes EVERY TIME to
mouth pain is enough to drive one mad.

     I also want to EAT! I haven't eaten in forever! I want a bacon double cheeseburger, and, unlike most patients here, actually relish the thought of eating it. If I didn't have the pain, I'd eat it now!

     All this... is enough to make one depressed and quite frustrated.

[11-15-08] Mom's Update (Day +12)

4:20pm

WBC 17.4
HCT 27.6
PLT 27,000
Still running fevers

When Austin tries to sleep, he wakes up with mouth pain every 2 or 3 minutes. Austin is feeling "crummy" today. Austin had lesions on his head. He has infected follicles which itch like crazy. His upper back looks a very angry red where he has scratched. He also has a number of lesions on his back.

When changing his dressing, anything that sticks to his skin has torn his skin when it was removed. Now the nurses are putting gauze wrap under anything that needs to be wrapped up (i.e. his PICC line). The PICC line drives everyone crazy because there are so many lines that get tangled up... causing occlusions. Austin has figured that the least occlusions occur when the lines go over his shoulder and down his back and then a shirt over that.

The doctors made an non-scheduled afternoon visit. Without saying they made a mistake, they said that taking him off such a continuous high dose of Fentanyl could be dangerous to Austin. Also, they thought he was needing the "on-demand" dose too frequently. The result? They have changed his medications. His continuous has been added back. They talked about reducing the "on-demand" dosage, but have not done so.



Austin can leave his room and walk the floor, go in the conference room and play a game(you guessed it, he beat me again). We no longer have to wear gowns and gloves, only the mask.

Today, Austin is focused on looking forward to Liz's visit. He is trying to rest a lot. I am watching him trying to sleep right now and notice that his body is twitching a lot.

[11-14-08] Tired (Day +11)

[Early Count Update]
     Here's my counts:
       WBC: 17.4 (6.9 yesterday) -- Woot!
       Hematocrit: 27.6 (28.6 yesterday) -- Transfusion likely tonight.
       Hemoglobin:9.7
       Platelets: 27,000 (20,000 yesterday)


[4:07pm]
     I've been really tired (sleepy-type) today. This was great for the morning because I was able to sleep-in a ridiculous amount (I've been having lots of trouble sleeping lately...)

     *bzzt* Sorry! I can't write anymore, I feel too crummy and tired. So, I've asked my mom to do any updates.

[11-14-08] The System is Down (Day +11)

[6:32pm]
     Here's my counts:
       WBC: 6.9 (1.3 yesterday)
       Hematocrit: 28.6 (29.0 yesterday)
       Platelets: 20,000 (16,000 yesterday)


     This is going to be a short post because... duhn duhn DUHN... THE INTERNET IS OUT!!! NOOOOOOOOOOOOOOOooooooooo

     Something went awry with the medical network yesterday. Nurses were waiting in line to use the printer, because they had to record everything on paper. They would no longer use their fancy "vitals machine". (which combines an automated blood pressure cuff, a digital thermometer, an O2 Saturation probe, and a computer to automate, record, and transmit the information down those network pipes.)
     In other words, if you hit the call button in an effort to get more water, be prepared to repeat your request and wait several hours. Well, that's not entirely true -- some nurses adapt better than others.

     What is interesting about this network disaster is that the free public wireless was working fine throughout the day. The next day, when they finally fix the network, the public wireless fails utterly. And that's where I'm at -- I've been on the phone with the techs -- they say it should be fixed by tomorrow.

     In the meantime, I've been using some unreliable 1-bar public wireless from (I believe) a hospital nearby. It's a bit frustrating.

     So, here is a bit of news for the day:
       Mouth is finally beginning to heal! Maybe tomorrow I'll be able to speak like a real human!

       Continuous portion of pain meds discontinued (clicking on-demand still works)! Earlier today, they decided to cut the continuous portion in half to ween me off the Fentanyl. When it was revealed that my problems going #1 were due to the continuous dose, I jumped on the idea of removing it entirely.

       I may be discharged early -- the doctors pointed to the 18th on the calendar. However, some of the requirements were that:
  1:I had no pain so severe that pain management was necessary (so mouth gets better). Alternative Interpretation: No dependence on pain meds.
  2:Able to eat! (Again, mouth gets better)
  3:No Fever


That is all.

[11-13-08] Mom says "Different day, more of the same"

WBC 1.3
HCT 290
PLT 11,000

Temperature: Has been up to 101.6 on Austin's thermometer. Doctors don't seem stressed about the fever. They think it could be white cells fighting an infection.

Today is mostly a repeat of yesterday. Austin's mouth is still very painful. He has two especially bad sores under his tongue. The Fentanyl has been increased (50Mcg to 75Mcg) on as needed basis but Austin tries not to push the clicker so he can stay alert. The increase in Fentanyl HAS affected his concentration. A few hours ago he was standing with a vacant expression on his face, body swaying; I called his name and he jerked to attention. He says he was daydreaming, I think he zoned out! I need to play him a board game tonight so maybe I can win for the first time!! As I read this to Austin he says again "I really was dreaming".

What I find strangest is that Austin will lay down for a nap and wake up thinking it has been 30 minutes later - most of the time it is about 1 minute! He does that all day long. When he wakes up, he feels rested.

The other strange thing is that his body jerks him awake often. His oxygen monitor often goes off for too little oxygen, so that Austin now makes it a habit to put on the oxygen tube before laying down.

We are attempting to watch the movie "BRAZIL". We are often interrupted by nurses, machines going off, bathroom needs etc.

Indicators of Austin's pain level:
   1. Austin talks very slow trying not to move his lips or tongue
   2. It is worse when Austin starts typing on the computer screen         to communicate.
   Signs it is worse:
      Austin will hold his hand to his mouth, palm in, BUT when the pain really gets bad, he will hold the back of his hand to his mouth and his hand shakes---then he looks for his clicker!
      When Austin stops obsessively rinsing with saline water....then even that hurts too much. Austin has mentioned that the saline is not as effective as before. Previously, Austin would rinse with the saline and could talk for a few sentences - now it is maybe a few words if we are lucky.

[11-12-08] Silence (Day +9)

[11:28pm]
     Here's my counts:
       WBC: 0.2 (0.2 yesterday)
       Hematocrit: 28.6 (26.5 yesterday)
       Platelets: 12,000 (18,000 yesterday)


     Have you ever wondered what it would be like if you couldn't talk? Say you got in a horrific motorcycle accident that damaged only the speech centers of your brain... or an accident so bad that they had to permanently fuse your jaw shut.
     I always imagined that I'd get along just fine. I'd carry a chalkboard around and communicate through written word.
     10 years later, my elementary school daydream has turned into a reality...

     Due to severe mouth pain, I can't speak right now... Not one bit.

     "Testing... testing... this is a test."
     Ok, I just tried talking. The other three previous attempts failed and were quite painful. But I can do it now!

     It was the pain meds. Once my mouth started hurting, I began clicking. Not religiously (exacty every 10 minutes), but often enough.
     I managed about 4 clicks before the nurse came in and inquired about my pain level. I write on my computer: "6: 7 when talking and when silent."

     She had to take off (for another patient, I believe), but in a few moments she was back and we discussed our options with me talking on the computer.
     She wanted to talk to the doctor, to get some part of my pain meds increased... I agreed... provided that I have at least a chance to try to get relief.
     My strategy was to click as often as the pain machine would let you (10mins). It was my belief that after 30 minutes or so of doing this, that I could begin speaking again.

     My experiment failed. She checked in on me, and I still couldn't speak. So, she ran off to contact the doctor. Meanwhile, I continued to type this entry and click every ten minutes.

     Eventually, I had so much pain relief that I was able to speak some words. Still couldn't speak most words, and definitely not a sentence. Still, I had decided to quit clicking for a while because I realized that I had had A LOT! Plus, the pain was a bit more manageable.

     Then the nurse had returned: The doctor approved upping my on-demand dose from 50mcg to 75mcg. I had specifically requested an increase in the on-demand dose instead of the continual dose. A continual dose is administered non-stop, whether you are feeling lots of pain or no pain at all... since my pain levels fluctuate, a continual dose is rather inconvenient. The tradeoff with Fentanyl is pain and mental acuity vs. no pain and less mental acuity. It would be lame to reduce one's acuity during a time when they were experiencing no pain.
     Anyhow, I digress... Even though I can't speak now, the problem seems to have be resolved: pain relief for those nasty situations will be possible much quicker. This time, it took 130 minutes for satisfactory pain relief. With the increased on-demand rate, I should receive comparable pain relief (perhaps greater, because it is quicker) in about 86 minutes.

-------

     Writing this post has been absurdly difficult. Remember what I said about mental acuity? Well, I've had quite a bit of Fentanyl, and my concentration is positively pathetic. I start to daydream mid-sentences, sometimes to such an extent that, instead of the subject-at-hand, I start to type about the dream instead of the blog. Sometimes I just drift off while typing a sentence: "something like thhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhhh"

     In fact, that's why I was especially motivated to finish this little post -- my mind is challenging me!
     Also, I'm sure my writing has been unclear and generally awful for this post. So I'm trying extra hard for it to make sense (Additional Challenge)! I'll find out tomorrow just how bad my writing is on large doses of Fentanyl.

Whew, I'm done. That took 2 hours and 10 minutes to write!

[11-11-08] Mourn the Eyebrows (Day +8)

[Counts]
     Here's my counts:
       WBC: 0.2 (0.1 yesterday)
       Hematocrit: 26.5 (29.2 yesterday): 2 Units Blood Later
       Platelets: 9,000 (18,000 yesterday): Platelet Transfusion Later
       Hemoglobin: 9.2 (10.5 yesterday)


[4:17pm]
     Yesterday, to my delight, I had discovered that my hair was falling out again. I was delighted, of course, because it triggered the whole "chemo is working because..." emotion. It wasn't a slow loss, either -- the tiny blond hairs that had started to grow back were coming out in clumps. Following tradition, I proceeded to shave with my fingers (pinching).
     Today, I was shocked to discover that I had no eyebrows. I don't know why I wasn't prepared for this: I recognized that the eyebrows were thinning, but I didn't think they'd all disappear entirely overnight! Oh well, they are gone.
     I always said that I would have the most difficulty losing the eyebrow hair. This is mainly because it is an unavoidable cancer giveaway. Having a bald head can simply be a fashion statement; no one intentionally shaves their eyebrows.
     So, now, I can't simply pretend that I don't have cancer when I'm out in public. It's funny though... now that I've been through so many painful, embarassing, or humiliating situations... I could really care less about not having any eyebrows.

Barbara just arrived, so I'm gonna hang out instead of ranting further!

P.S. I just realized -- no eyebrows indicated that I went through cancer treatment... As of now, there's a good chance I no longer have cancer. That's a good thought.

[11-10-08] Totally Acclimated (Day +7)

[10:52am]
     Here's my counts:
       WBC: 0.1 (0.1 yesterday)
       Hematocrit: 29.2 (29.5 yesterday)
       Platelets: 18,000 (32,000 yesterday)
       Hemoglobin: 10.5 (10.5 yesterday)

     So, I haven't entered the "recovery phase" yet. Basically, I've been told that once the WBC starts to go up, then I will have begun recovery and all my symptoms will begin to improve.
     Naturally, I'm paying a lot of attention to when that day occurs -- I look forward to a reduction in "mouth pain." (The only other major symptom is the myriad of skin problems.)

***

     It was only a week ago that I had my stem-cell transplant -- for me, it seems like the time has flown by. I guess that's a darn good thing to feel -- that time flies in the BMT ward. Probably a bit unusual too...
     Pre-transplant was a different story -- that was generally a pretty rough time (The ICU, the chemo, the nausea/vomiting). On the other hand, once I was moved into isolation (single room) things rapidly got much better. By then I was only concerned with skin problems and mouth pain. Once I began Fentanyl for mouth pain and religiously began applying skin care stuff, I found that I was no longer counting the days until departure... time was moving faster; I was enjoying myself.

     I guess my point is that I have completely acclimated myself to my particular room in the BMT ward. I have an established routine For the time being, this is my new home. It is nice.

[11-09-08] Fentanyl Conspiracy (Day +6)

[8:37am]
     It's no surprise that I have a severe aversion to pain. I've ranted on the subject on several occasions and even have a dedicated tag to link all "pain" postings. Whether it be a bone marrow biopsy or neupogen-associated pain... I hate the pain, and will write about it.
     So, you didn't actually think that was the final word on Fentanyl/mouth pain, did ya? Well, the mouth pain is only getting worse, and the Fentanyl and it's requirements are getting quite absurd.

For example:
     They hook you up to a pulse/SPO2 (Respiration Oxygen?) monitor as a requirement for anyone on PCA (Patient Controlled Analgesics). This is annoying for all the standard reasons:
       1:If you want to go to the bathroom or anything, you have to turn the machine off, then unplug your probe lead (which is tricky in the dark). Multiply this act for every time you need to go to the bathroom/brush teeth/use sink/relocate... and you'll find that you spend quite a lot of time doing this.
       2:You have to wear the darn probe indefinitely -- removal destroys the probe. So, one of your left fingers will be made useless -- and especially now, I need *all* my fingers (tricky catheter de-occlusion maneuvers, applying lotion, typing).

     But these are just problems of convenience -- the real difficulty lies in the SP (Saturation Percentage) reading for your Oxygen (O2) levels. If, for any reason, the machine thinks that this level is lower than 87, it beeps LOUDLY! This makes sense, as large doses of Fentanyl can cause a decrease in respiration. However, there are a couple of problems with the SP02 reading:
       1: A wet or sweaty probe causes drastic reductions in the measured SP02 level (Alarm goes off). This means that you cannot wash your left hand...ever? Ok, so you've figured out how to wash everything *but* the finger with a clever use of a ziploc bag or something... but then, how does one take a shower without it getting wet? Then there's the sweats -- maybe my fingers sweat while in a plastic probe?
       2: A loose probe connection ALWAYS causes a reduction in SP02. Remember how one has to wear the probe non-stop 24/7? Well, if any one of a million actions during that time causes the little red light to become misaligned... be prepared for many alarms.
       3: Sleeping on one's side causes a reduction in SP02 (for some reason) -- in order to get any sleep during the night, be prepared to learn how to sleep on your back.
       4: Random machine weirdness. You could be sitting up, typing away on your computer, no Fentanyl delivered for an hour... and the SP02 alarm goes off. Or it says your pulse is 230 and people come rushing in.


     So, where's the conspiracy theory? Well, it's not actually a conspiracy -- I don't think there's a consortium of nurses plotting to prove that the amount of pain I experience does not justify the amount of Fentanyl I use.
     I do, however, seem to experience a lack of concern about forced sleeping positions, noisy machines, or the accuracy of the current SP02 reading. The answer to all these problems seems to be the implied: "Well, just take less Fentanyl and you'll be fine."
     In honestly think there are nurses here who believe I am taking more Fentanyl than I need, and am currently over-medicated on it. Nevermind the fact that I wake up at 7 and approach the day bright-eyed and bushy tailed... I even skip my afternoon nap so that I can get better sleep at night. The nap, being tired... these things are perfectly normal for a cancer patient undergoing BMT, but nevertheless, I feel like I need to demonstrate my clarity of thought. I also don't have dizzy spells or other things associated with too much Fentanyl.
     Still, there have been times where the pain was great and I repeatedly took extra Fentanyl... I'm sure I was a bit drowsy then... but nothing dangerous!

-----------------------------

     Enough of my rant. I just finished typing it when my two doctors showed up...
     Doctor: "So how has your pain management been doing?"
     Me: "Not so well -- I haven't been clicking the relief button because this darn machine gives inaccurate readings, and taking extra Fentanyl doesn't help things. For example, I can't click at all if I want to sleep on my side -- I need to get to sleep. So I usually just work through the pain; plus, I feel that some of the nurses don't want me clicking... maybe because my dose is too high, or that it's dangerous or something."
     (Both Doctors) "No, no, no, no, no."
     (First Doctor) "Take the Fentanyl -- that's what it's there for. The nurses should be checking the machine's accuracy routinely... there's this bar that goes up and down with your pulse... [forget details] Plus, there's always a doctor on call -- tell the nurses to contact the doctor if they have an issue with your SPO2. I'll be on call tonight if anything comes up.
     Me: "Ok, thanks. So, just to be sure, it's OK if I click repeatedly if I have pain?"
     Doctor: "If you have pain; take the Fentanyl."

     Then they went on to discuss other parts of my health.

     So... GREAT! I feel so liberated! This has been a huge weight on my shoulders: pain on one side/upsetting nurses on the other (though I'm sure with some nurses it's all in my head; some are more explicit though).
     As originally planned, I'm going to click when I feel pain! It's so simple! *duh* Stupid Austin: Don't let others push you around.

     On another note, Barbara mentioned how I haven't been posting my counts -- I'll try to start doing that. She seemed pleased that my WBC went from 0.1 to 0.6 (on Friday)... well, my WBC taken yesterday was 0.1.
     I'm told that I'm not recovering yet; that it's still a good 5-9 days or so before I start to recover.

[11-08-08] Long Night + Fentanyl (Day +5)

[8:48am]
     Last night was a looooong night. Not a hard night; a long night.
     We had several objectives:
       1: IVIG (Norwalk Treatment) - Represents about 4 hours of the nurse coming in and out.
       2: Bag of Platelets (Due to some rectal bleeding I discovered on Fri.) - Represents about an hour of nurse coming in and out of room.
       3: Two units of blood transfused (Hematocrit is at 26 -- bah, I could go way lower, but I guess it's better to be safe than sorry). Plus, those bags are liquid energy -- like the stimpacks from video games - "Let's get some!" Two bags represents 6 to 8 hours of the nurse coming in and out of the room.
       4: All the usual stuff -- Antibiotics, hydration, etc...

     Calculate the fact that the PICC line has only two lumens, and you have a long evening indeed -- We just finished a couple of ours ago.


     So where does Fentanyl come into play? Where doesn't it! Well, I would fall asleep, the nurse would wake me up and ask me my current pain -- I'd usually say something like 4 or 5 (because the psin is usually high upon awakening). Then, I'd click the Fentanyl clicker. This would, in turn, lower my respiration and make me feel a heckova lot better.
     But the respiration going lower wasn't a good thing if I was to be going to sleep -- ya gotta keep breathing in those dreams of yours!
     Accordingly, they put be on oxygen durning the night.
Despite the respiration, I was in pain, so I continued to click away. Maybe I'm worse at night because there is no mental acuity/pain tradeoff when I am asleep...

     Anyhow, I got a little Fentanyl lecture. Not a stern one, just a "Hey, don't be reckless with this stuff -- it's dangerous" lecture. In a way, it was quite disappointing, because I like this nurse and I most certainly do not use Fentanyl recreationally - I may joke about it, but it is really all about pain relief.

     I recall a nurse answering a question from my mom on the suject of chemical dependency... The nurse replied, "As long you as take the drug as prescribed: to relieve pain, anxiety, or whatever it is indicated for. there is zero percent chance of addiction.

     You may be able to tell my writing is being influenced by Fentanyl at present, but should that prevent me from taking more if I am in pain?

No Way!

P.S. - I finished assembling my metal praying mantis that Barbara got for me -- it's awesome!



[9:54am]
     I just had to be instructed in general ass care and proper application of lotions. This is because of the previously mentioned problem in the rear. *sigh* How embarassing.

[11-07-08] Things are Great (Day +4)

[7:19am]
     Let's see... time for yet another update on my general well-being and state of mind.

     Physically, the mucositis has deteriorated to epic levels. I tried to take a ship of chilled milk this morning, but it literally scalded my mouth. Just out of curiosity, I pondered to myself how could something that is chilled taste like simmering water. Then, I proceeded to mouth the words "hot, hot, hot" as I'm fanning my mouth with my palm -- sign language for "I just ate a whole heap of Jalapeno Peppers," I'm sure.
     But even without food/beverage, just repositioning my mouth alone can cause quite severe pain. Talking is very, very difficult. And, as Barbara has said, I've learned that certain words be only said through clenched teeth, for safety purposes.
     Still, Fentanyl is my friend. And as Dan said in his previous email: "Hang in there bro...click......click....click...clickclickclick."
I couldn't agree more

     However, there's the painful mental acuity vs. stupid and painfree tradeoff. To those used to my writing, it may be painfully obvious that I've been clicking the pain away. I keep nearly dozing off mid-sentence, so this may be an entry best kept short.


     Then there's the myriad of skin problems. Now, just the phrase "skin problems" sounds like it can be treated with little more than daily moisturer and some SPF 10.
So let me rephrase that: "There's the myriad of skin/host rebellions with a scattered collection of skin terrorist splinter cells."
     That's better. My chest looks like it's been subjected to an Iron Maiden with a sort of chicken pox.
     But, I believe I went into a little detail yesterday, so I'll spare ye. Lets just say I've been vigilant!


     Anyhow, nausea is at a low because I'm not eating much! Woohoo! Err, I take that back, completely. I was about to take pills while entering a blog entry, but nearly threw up. So, nausea's not completely gone. But I'm getting tired, so I'll just summarize like this: My symptoms are getting worse. My management of those symptoms has gone through the roof on both an emotional and a chemical level. In short: Things are great!

my Things are going smashingly well!

[11-06-08] Day Three (Day +3)

[6:13pm]
     Day 3 has come and gone for me, and despite my previous assertions, I believe that I was incorrect when I said that "Day 3" will be the most severe. From what nurses and doctors say alike, the worst days are those just before the time of "white blood cell recovery" - when your white blood cells begin to reproduce themselves normally.
     Still, with all my personal hype built up, I have somewhat come to believe that day +3 is a milestone of sorts. So, in the name of journalistic integrity and whatnot, I am here to complain, yet again, about a new set of "experiences."

     This morning started out like any other: with a shower. However, in order to shower-protect my newfound PIC catheter, I needed to figure out how to use their associated shower contraption. Not too tough -- imagine waterproof sleeves with belt strength cuffs at both ends. My arm was nice and warm.

     In addition, I had to unplug myself from new and (EXTREMELY LOUD) health monitor. This is because they have me doped up on self-administered Fentanyl -- it makes sense, really, you don't want to give autreally bored individual an essentially limitless supply of Heroin without any precautions, do you?
     So, that health monitor is yet one more thing that I have to worry about... plus the fact that the sensor is placed on my middle finger makes typing quite difficult.

     After the shower is typically lunchtime: where someone walks into the room with some food. I like to see their expressions when I say, "Nah, I'm not eating food anymore. No thanks." They realy want to leave you the food -- as if their jobs depended on it. Oh well.
     Not having to eat at all is quite liberating, in fact. Keeping certain foods down is a tremendous chore. Plus, often the food you can keep down tastes horrible or something. Then you puke it all up anyways, so all that effort was moot.
     So, just skip the middleman and avoid eating entirely... say, until when your white counts start to recover.
     As for the pills... yes, having some food in the stomach is necessary for digestion of certain pills.
   I'd say: 1> Consider not taking said pill -- is it really important? or...
   I'd say: 2> Ask from some Ativan before you take your pills -- it helps!


     The other things I sped my time doing (religiously) is mouth care and skin care. I do my following skincare/mouthcare regimens every time I get up for the bathroom.
*** MOUTHCARE ***
1> Rince with saline solution and spit out. Sounds simple enough.
*** SKINCARE ***
1> Apply general moisturizer to dry areas on chest and back
2> Apply special anti-itch moisturizer to itchy areas on chest and back, armpits, and groin area.
3> Apply super-special cream to areas of skin with a rash due to repetitive motion of areas (arm pits, thighs, groins, etc...)
4> Apply ultra-special powder.


     As much as I would hate to do so, #4 requires further elaboration if I am to be called a reporter of the facts. You could also label is as TMI;DR (Too much information; Don't Read).
     Anyhow, VP-16 is VERY toxic for the skin. I mean, right now, my chest looks like it's been put through a blender. Huge purple streaks are visible, rashes, and spots of red dots (folliculitis) show up everywhere.
     In addition, in areas with high friction, such as groin, or armpit, skin tissue has been known to slough off in chunks.
     Let's just say that I'm fighting to prevent that from happening, it can be quite difficult, and that is where powder #4 comes into play.
     I can see many making the following joke, so I'll just beat ya to it: For the sake....of...my skin...I must...powder my balls.


     Lastly, I'd just like to say a few words about patient-controlled analgesic. They switched me from Dilaudid to Fentanyl which effective halt the pain related nausea! Awesome! No more choosing between having pain or being sick. That is all. Take care outside world.

[11-05-08] Day Three is Coming (Day 2)

[2:41pm]
     Today, I wanted to tackle the world head on! I woke up early, took a shower, did all my skincare/mouthcare, and dressed up in my street clothes. Then I sat on my newly installed exercise bike, turned on the TV, and got ready to do some exercising!
     ***OCCLUSION IN LINE***

     That is my metaphor for the day. The darn pumps beeping. They beep continuously and relentlessly until a nurse (not you) fixes them. Air-in-line, transfusion complete, occlusion in line errors are enough to take any sane man to oblivion.

     Unfortunately (or fortunately), I'm too tired to rant any further... I got some sort of weird virus in the hospital, but my mom will tell you all about that.

     PS -- Everything I've read seems to indicate that day +3 is the hardest. So, one more day!


MOM'S UPDATE 3:05pm

This morning when I arrived a nurse was putting in a PIC line in Austin's left arm. She had some difficulty due to scar tissue. Normally, the PIC line hangs down but for some reason, Austin's line goes up and the line keeps having problems. The nurse comes in and fixes it...."beep, beep, beep" again. Austin is VERY tired and just wants to get some rest but either the beeping is going off giving him a headache or someone is coming into the room.

Austin's nurse recently came into the room to give us some "bad news". Both Austin and I thought that she was going to say that something is wrong with the PIC line and it would have to be redone. Wrong, Austin has a virus called "Norwalk". This is known as the "cruise ship virus". No one can account for how he got this virus, but NOW everyone haws to wear gowns, masks and even gloves if they are going to touch the patient. It is highly contagious and the main symptom is diarrhea. Another patient on the ward tested positive for it, but apparently now he is negative.

Anyway, Austin will be given IVIG, which is collected from a group of healthy donors and has the antibodies to fight this virus. I caught the doctor in the doctor's area and asked a few questions and he will be visiting Austin to explain in more detail and also to pull the central line from Austin's neck.

Austin's vitals are fine. His mouth hurts so much it is hard for him to talk. He was able to keep some ensure down and will get IV nutrients starting tonight.

[11-04-08] A Challenge! (Day +1)

[8:17am]
     I feel that I have now familiarized with my arsenal: anti-emetics, Dilaudid, creams/ointments, mouthwash, applesauce, etc... I am ready for the challenge!

     At first, of course, I felt quite helpless. I mean, I was limited to the drugs the doctors provide, the schedule of the nurses, and how my body reacts to the chemo... But now, I'm establishing a sort of routine. Each time I head to the bathroom, I apply various lotions and use the mouthwash. Each time my mouth hurts especially, or my stomach feels upset, I can click away on the clicker! Control! It is a good thing.

     I suppose it's a time tested strategy for me: When the going gets tough, establish a routine. :P

     Bah, I just vomited. All that effort getting my rice crispies soggy so that I could eat them... Oh well, I'll just eat more or something. It's routine -- what can ya do?

     Funny... I can't talk right anymore :P I have to speak real slow -- like I'm drunk even.


[3:24pm]
     They upped my Dilaudid because the mucositis got so severe. In the blink of an afternoon, I can't eay anything -- it just isn't possible. Even Jello is too abrasive! Popsicles: Your tongue has to scrape the ice off.
     So, right now, I'm on a diet consisting entirely of Gatorade and water. Hmm, now is a perfect time to demonstrate the health benefits of non-alcoholic beer. A friend of mine's father, who is head of the pathology dept. at some big place, once told me that non-alcoholic beer is better for you than gatorade. The beer has starches, sugars, protein, and whatnot. So, they should prescribe me some non-alcoholic beer! My life may depend on it! :P

     Seriously, though... they'll probably give me liquid nutrients or something... eck. I need to keep my stomach processing stuff!

     Please excuse the fact that my posts may be a little less, uh, cerebral, than usual. :P

[11-03-08] Happy Re-Birthday to Me (Day 0)

[5:46pm]
     Actually, the stem cells were the least of my concerns today. After discovering just how much happier and pain-free I could exist with Dilaudid, I became just a little upset when I had to wait an hour for some morning relief. Apparently, you're out of luck if you request any medication between 7:00am and 9:00am.
     So, in my discomfort, I sat there waiting for the nurse to administer the medication. It seems I do that a lot these days. And, well, today I had a nurse that was particularly slow. After a while, I got my medication, and was set up for a patient-controlled "clicker" device. Of course, we were told that this would take place before lunch, then before one thirty. Meanwhile, my initial dose had worn out hours ago and I'm feeling crummy. But, of course, I couldn't do anything about it because the "clicker" was on it's way. So more waiting.
     Then I vomit due to nausea... 30 minutes for Ativan (with mom bugging them twice). Yes, I'm complaining, but it has been a ridiculous day for me. People are suffering here!

     Don't get me wrong, there are plenty of very fast and dedicated nurses here. Plenty is not 100%, though. So every now and then, I guess ya get the short end of the stick.

     But my point here isn't to attack anyone, just to vent a little frustration and explain why my Re-Birthday has been somewhat more anti-climactic than expected. But now that the shifts are a-changing, I'm starting to feel a little more comfortable. My Dilaudid pump is working fine and keeping my stomach from eating itself. So all I really have to worry about it my skin (I am quite spotted!), eating food, and managing nausea.
     All in all, with the Dilaudid in the picture and a little effort, I can have a fine day. So sweet.

     We also moved into an isolation, i mean, single room. So there's a lot more space and it's kinda nice! My mom tells me I need to stay neutropenic! :P
     Still, though, I can't leave the room. Makes have a little cabin fever, ya know? I hope I'll make it through that alright.
     Oh, and can you believe it? Liz and I were casually talking when a maintenance guy storms in and says: "Ok, we're moving you now." I have so much stuff with me! The xbox, the computer, clothes, games, etc, etc, etc... IT was a very frantic few minutes, indeed. But we got it done. Kinda silly being a neutropenic BMT patient with a mask and scrambling like he's trying to loot an xbox 360.

     Thanks for the birthday wishes, everyone!

[11-02-08] Queasy Buddha (Day -1)

[7:17pm]
     I originally wasn't going to post today -- the world was just too bleak. My stomach pain/queasiness/discomfort/whatever was distressing every aspect of my life -- not like you need to vomit, but that you're just sick in the stomach.
     I spent basically the entire day trying to combat it. Chugging Maalox, repeatedly going to the bathroom, sleeping, lying still, concentrating... anything! Eventually, I game to realize that the only practical strategy was unconsciousness.
     So, when poor Liz came to visit me, I wasn't very good company. I pretty much slept most of the time. But what else could I do?
     What's worse is that I began to get depressed about this. 3 more weeks of this sort of stomach sickness was an unbearable thought -- but what could be done?

     Enter the brilliant doctors and their brilliant drugs.

     It turns out, that my GI tract is all messed up due to the chemo. So, it's not your normal "flu" like symptoms that is causing my queasiness. The doctors prescribed a gnarly painkiller called Dilaudid, and it works great! All of a sudden, I feel like my life has returned to me! I can concentrate enough to type in my blog, or watch a bit of TV, or play some video games -- it's wonderful!
     I'm staying on this stuff. And it's not recreational or anything like that, I'm just happy to not be suffering. It's Buddhist philosophy: "Without suffering, there is no happiness." [Edit: Apparently I'm completely wrong here, so, instead just consider the quote my personal philosophy] Well, my absence of suffering is making me damn happy right now.

[11-02-08] 5:45pm Mom's update

Today has been sometimes crazy and sometimes really quiet. When I first arrived, the first thing I see is someone in the room without a mask. I saw red! I asked to speak to the resource nurse (the nurse in charge of the floor). I told her everything that happened yesterday and said that if a procedure is set in place, then it should be the same procedure for everyone. We talked for quite some time. She was in total agreement with me about everyone wearing masks when they enter this room and promised she would talk to all the staff today and tell tomorrow's resource nurse about our conversation...AND have that resource nurse come talk with me. We talked about the fact that I (or any other family members or caregivers) did not need this added stress.

I also explained that my concerns were not only for Austin, but also for the other patients. I was not given any instructions about how to wear my gown or mask, and didn't find out that there were special sinks there to wash my hands every time I come onto the ward. Basically, it is like the 3 minute scrub with a brush but without the brush. You press the pump for the special liquid into one hand and with the nails on the other hand scratch into the palm of the first hand - which works the liquid under the fingernails, then do the same with the other hand. I noticed that many people who come onto the ward don't do that. One man who entered when I entered just put on a mask and gown and never washed his hands in any way in the ward!

She also said that she had planned to move Austin into a private room on Tuesday but she would try to get him one today or tomorrow if possible. Austin's roommate was supposed to be moved out to another floor (he is not a BMT patient but the floor he should be on ran out of beds) and the resource nurse said that she would do everything possible to keep the second bed in the room empty. That all happened around 9:00am. About 30 minutes after the resource nurse left, in comes a maintenance man with a ladder and NO MASK! He said that the nurse at the reception desk told him he didn't need a mask if he was only in the room for 1 minute! I left the room behind the man and lo and behold, there was the resource nurse. I told her what the man said and she was very upset and apologetic.

I was ready to hand make a sign to tape on the door (in addition to the red paper that is already on the door saying that a mask and gown must be worn into the room). The resource nurse said she would make a sign - and she did.

It is now 5:45pm and nothing about Austin's room situation (including his roommate) has changed.

As for Austin - how is he doing? Austin enjoyed seeing me on my rants on his behalf. His stomach is queasy but not hurting or nauseous. He is trying to eat but having a hard time. His mouth is sore. Today the doctor's told him that they were sure he would be on IV nutrition soon, as most patients in his situation are. His blood pressure is fine, no fever, headaches or neck pain.

Liz came for a visit from about 1:30-5:30 (Yeah Liz!!). I took that time to run errands. Austin says he slept a large part of that time due to stomach discomfort.

When the doctor's where here this afternoon I asked them why they only take blood at 8pm (and don't get the results until about 10pm). What happens if Austin becomes neutropenic during the next 24 hours? The doctor said that they try to plan ahead based on his stats and get him into a private room.

Doctors just came in and there was a discussion about Austin's stomach problem. Maalox has not helped. I mentioned that Austin downplays his discomfort. The doctor is going to give him morphine and see if that helps. The idea is that the mucositis in his mouth is throughout his gastric system and the morphine should calm that down. Austin said he is feeling giddy at the thought of relief!

[11-01-08] Cytoxan (Day -2)

[10:55am]
     I forgot: this is supposed to be Christmas! This is what I've been looking for: BMT Fantasyland, where you can just sit back, take your pills, and have your cancer melt away. Nothing is further from the truth.
     Everything in here is a little battle. Taking your pills in the morning without vomiting is a battle. Fighting to get your anti-emetics is a battle. Just surviving all this is a battle.
     I've come out of the ICU with some battle-damage: A few more scars (one from a removed catheter), an IV placed in my hand, and a weird three-pronged catheter in my neck. Then I was sent home, to the BMT unit. Two transfusions later, I'm feeling a little more energetic, but still I am feeling persistently nauseated. I guess that's how things go around here: a battlezone and a balancing act.

     I just hope it gets better. Unrealistic, I know -- but this is putting my body through quite an ordeal. I can't wait to see Liz :P


[2:30]
     We started the Cytoxan about an hour ago. Back then, the prospect of more chemo was faced with a good deal of dread. I had nausea and quite an upset stomach -- I couldn't fathom things getting any worse... But, like a good little boy, I took my pre-meds and started the chemo and fell asleep.
     I woke up feeling great! I mean, not normal great, but the difference between then and now was profound. So, I'm eating and writing on my blog! Eating cheetos and chicken noodle soup! I haven't eaten like this for days -- it's great! I'm joyful.

     Hmmm... On another note, I think I can feel the mucositis starting to creep in -- it not like sores, it seems, but a general sensitivity in the mouth. After my meal of cheetos and soup, it feels like I just had a bunch of Jalapeno peppers... Right now it is just interesting to notice, I'm sure it'll become a huge problem in the future -- they all say it does.

     Health Status: Blood Pressure is up, and I have normal temp! Woot!