[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!

[10-31-08] A Long Night...

[5:45pm]
     That was the hardest night of my life.
   The Clock: The clock is my enemy. I am aware that time will help cure this infection, but how much time? Each moment sounds with a resounding tick... time is moving way to slow.
   The FeverMakes it so you cant function, or do anything. Also causes headaches, pain behind the eyes, and persistent neck strain.
   The Neck Pain: The most annoying. Since I have so many hundreds of wires coming out of me, I am pretty much immobilized... I can only lie on my back. When my neck hurts, I'm out of luck!
   The Nausea: For some reason, my nausea came quick and violently. It was actually a nice thing, in a way. Of course, vomiting uncontrollably is no picnic, but the ativan always follows. That gives me a brief respite from neck pain, and a moment of blissful sleep.
   The Shivers: Terrible, unrelenting shivers... All your muscles get tired simultaneously. However, the nurse wouldn't let me cover myself with blankets -- I needed to get cold. So the strategy was to blow a fan on my, get me nice and cold, then dope me up with morphine or demerol so that I wouldn't shiver. It worked pretty well.

     Still, it was a long night.

     Thanks for all your support, but now I'm getting really tired again -- back so sleep!

[10-31-08] Mom's Update

12;25pm
i was able to see Austin at 10:00 am. He was extremely tired so I left the room so he could sleep.

I just returned from seeing Austin. He commented that it was a rough night. His temperature went up to 105 again and he started the rigors (extreme shaking). He looks very tired still. Austin also was vomiting this morning.

They will be moving him this afternoon. His blood oxygenation was down to 91 without the oxygen assistance, so they are still keeping him on oxygen support. They are taking it off every so often to check how he is doing without it. After eating some applesauce, Austin asked for some ensure (strawberry). Again Austin is really tired and I told him to go to sleep. I have left the room so that I could update his blog.

There is no internet in his room and there are no cell phones allowed on in the ICU.
I know this is not detailed information, but his nurse just left for lunch and I didn't ask for updates on his BP, but his temperature is close to normal - YEAH!


2:00pm update
I just went in to visit Austin. Let me describe the set-up. You enter a very small room, you must open a special packet that contains a fingernail scraper and brush/sponge with iodine/something mix - just like the doctors use on T.V. You need to scrup with that for 3 minutes, either before or after scrubbing, you put on a gown and mask. Then you can go through the next door into the room.

Well, after I arrived, Austin's nurse (yes, he has his OWN nurse who is just taking care him) poked her head out. Austin was gently snoring again. He had stood up to go to the bathroom and vomited, they gave him Adavan and he was resting so it didn't make sense for me to gown up. His blood pressure is fine, temp is fine and he WILL be moved back onto the cancer ward this afternoon!

3:50pm update
bp 91/55 Heart rate 118 oxygen temperature is 38c = 100.4

I am angry....grrrrr. Austin was moved back into the same room he was in before ICU. A room with another patient whose visitors are not required to even wear a mask! They say that Austin's counts are up high enough that I don't have to wear a gown but still need to wear a mask. I was told previously that under no circumstances should I even lift my mask to take a sip of drink; I would need to exit the room to do so. Now they have Austin sharing a room and the visitors are not wearing masks. One nurse told me that the curtain would take care of blocking the germs!!!

Ok, as I type this the head nurse came in and told me that I was rght and the other visitors would also have to wear masks. I am glad I madea fuss. Time to unpack.

5:10pm bp 81/48 there is concern...temp is still 38c = 100.4
they are pushing fluids through IV

5:30 bp 106/81 whew...everyone cheered
Austin is very tired and weak. Ate a little soup but has to take breaks to rest between bites.

[10-30-08] Barbara's Update - ICU

8:55pm Thursday
It is now 8:55, and Marie and I are waiting in the "Family Waiting Room" next to the ICU, an overcrowded, noisy, unpleasant place with loud conversation (most in Spanish) and unruly children. Austin is in room E260. I was able to speak to him for a moment. He appears calm, and his fever feels lower. The last I heard it reported was about 102. His room has a busy influx of nurses and doctors, so he is getting a lot of attention. At this point, his blood pressure is a matter of concern - it is in the vicinity of 80/40. However, his pulse is described as very strong.

The procedure as far as I know it now:
1. Install an arterial blood pressure monitor. This gives better BP monitoring.
2. Remove the Hickman catheter. This is what they suspect is causing an infection. When they remove it, there are signs they will be able to see easily indicating if an infection is underway. However, if they see nothing, that is not proof there is no infection.
3. Install a new port. This one will be in a vein near an elbow. (uncertain if I heard this correctly.)
4. Administer antibiotics - they have been doing so a couple of days already. Cultures are in progress, and if any are positive that will assist in optimizing the antibiotic.
5. Delay Cytoxan a day. Stay in ICU for at least a day.

We are worried of course. An infection for any patient with a near-zero white cell count is a serious matter. They have not said for certain that they believe this is a bacterial infection instead of a chemo reaction, but it appears that they must at least assume that is the case until proven otherwise.

Updates to be added, hourly if necessary.
------
Update, 11:05pm Thursday
We were able to visit him finally. Status:
1. Hickman catheter is out. They saw no signs of infection on the catheter, but the site seems inflamed, so they feel that is likely the cause.
2. An arterial BP monitor is installed in his left arm. Doing this, they found his central BP to be normal. That shows that the fever was causing his peripheral BP to vary. That is good to know, and is presumably good news.
3. He has a new central port installed in his neck. Wow, that was fast. It is on his right side, and I get the impression that it is somewhat annoying for him.
4. His fever is closer to 101 now, going down slowly. He says he feels tired and wants to get some sleep.

------
Update, 0900am Friday
It is frustrating trying to get through to the ICU by phone. Only on the 5th time did I get connected to the right room and the phone was answered. The nurse handed the phone to Austin. When I asked him how he was doing, he said "Not great." His temperature is 38.3C which is 100.9F. That is considered to be a low fever. He said his temperature went up again, but if it is 100.9 now, it must have fallen again - or I got the wrong temperature from him. It was a very short call. He also reports that he is uncomfortable and has not eaten anything.

---------
Update, 10:20am Friday
Phone call from Marie. She reports that the doctors have seen Austin, and that he is "doing much better" and that he may move back down to his BMT unit later this afternoon.

[10-30-08] Mom's comments

Austin was feeling sick when I arrived this morning. He tried to drink ensure and it didn't stay down. He has been getting Benyadril and Adavan (sorry if I spell them wrong) to help with the nausea. Around 12:20 they started his chemo. He slept off and on for almost three hours and then started shaking violently. He was freezing. I went and got him two hot blankets, but that didn't help. I asked the nurse to come right away. Soon after it became worse and as I was getting ready to yell for a nurse (my hand was reaching for the handle) - she came in.

The nurse had to check his blood pressure and temperature because they are concerned that his blood pressure has been going too low. Finally two nurses came in with four more hot blankets and IV medications - Demerol and adavin to stop the shakes. One of his doctors just came in and checked up on Austin, then she ordered Compazine (another anti nausea medication) for Austin. He has already had all the Benedryl and Adavan allowable in a certain time frame. Because of all the shaking his temp. is 103.6. To tell the truth, he was shaking so hard (he said he was freezing) I almost climbed into the bed with him and held him!

The medication has worked and the chills and shaking have ceased - Thank God!

On a side note...many of the nurses and aides have admired the chemo quilt that Liz's mom made for Austin. I am happy that I can be one of his support team and although the circumstances are not the best, what an awesome opportunity to spend quality time with my son.

Yesterday Austin told me he was bored and he laughed when I offered to get him his DS or a book. Austin said that it was the first time that I didn't respond with... "Then clean your room" or some other chore. I told him that this is the first time in his life that he has my undivided attention for two months and I am at his beck and call.

I hope Austin will feel better soon so that he can write his perceptions of this event. His chemo today is administered for over a four hour time period and he has about 20 minutes left.

As I finish up now, Austin is asleep again and gently snoring with a few occasional grunts.

Mom - cont. 5:30pm

Austin's temp reached 103.7 and is starting to come down; however, it looks pretty certain that he will be going upstairs to ICU for the night. The possibilities are these: 1. He has some sort of infection/bacteria in his line and they will have to remove it, use veins for IVs for a day or so then put in a PIC line...which is like a port but it enters at the inside bend of the elbow and goes to his chest. They use exray when they place the line. 2. He is just having chemo induced fever or 3. he has some sort of other infection. They did a blood culture last night and again around 3:45 today. It takes 24 hours to get culture results back (they also did one Sunday night).

I will be allowed to stay with him until tonight. It is hard to watch Austin feel so bad. His symptoms are: Fever - which has been pretty continuous since Sunday night but varies in severity, today being the worse. Neck pain - this seems to be a result of the fever but could also be a sign of infection. Headaches - again fever related. Backaches - no comment has been made about that but Austin addressed that in previous posts. Nausea/vomiting, today is really the first time since admittance that there has been actual vomiting (to my knowledge). Fast/heavy breathing, I know that could be caused by pain due to my personal experience. Dry mouth/thirst, no comment. Severe chills/shaking which the nurses call "rigors". Sweating, due to fever. Basically, Austin feels awful.

I asked the nurse and he says that it is obvious that Austin has some sort of infection and that it is pretty certain he will be going to ICU for a day or two. Once they find the source of infection, then can treat it. Meanwhile, they have giving stronger broad spectrum antibiodics, pushing fluids via IV and watching him very closely. In ICU there are more monitoring machines and they can watch him even closer - but the draw back in ICU is the germs that are up there from other patients. I will address that more later when I learn more about it.

to be continued.


6:30pm

BP 113/46 temp 40.6c = +105 degrees adding oxygen to assist breathing

They have taken blood gasses because of Austin's rapid breathing
The move to ICU is almost certain until they can find where the infection is.
The "germ" thing in ICU is during transportation, but Austin will have his HEPA mask on to protect him. He is sleeping - all the meds are sedating him.

6:50 BP 104/40 temp 39.6c (after drinking cold water). Ice packs on neck and head. Oxygen saturation 95 w/assistance - taking off assistance and will recheck in 10 min.
Gave Adavan (which contains some tylanol which also helps with fever). Austin is drinking a lot of water.

6:58pm Oxygen saturation 88 temp 39.0c 102.2 White cell count is down to .4
Back on oxygen support. Austin will be going to ICU. When Austin lays flat his breathing is more labored so it is better for his head and chest to be elevated - but not a huge difference. Central line - tunneled (his port) will be pulled in about 15 minutes. They will put a central line in at ICU, probably in his neck. All labs are consistant with an infection. IV being started at 7:06pm. Austin is now Neutropenic (ok I can't spell). This means he must be in "isolation". I must say I am impresseed. He has had a doctor stay on the ward to monitor him, his nurse stayed past his shift and right now he has 6 nurses and 2 doctors in the room (the ICU team is here).

[10-30-08] VP-16 (Day -4)

[10:50am]
     I've forgotten to mention some of the more important side-effects since I've been admitted here... As always, for the sake of accuracy, I will go into further detail.
     Firstly, I haven't really been able to eat anything. Surprisingly, this distresses doctors far less than one would think. Sure, I can eat a few bites of Jello here and there, milks, or a few applesauces, but nothing really substantial. The doctor's have mentioned TPN (which is basically IV nutrients), but they seem to think that it is not necessary as long as I eat something.
     Perhaps as a corollary to the first, I have been sans-poop for the past 3 days. This, on the other hand, has the doctors quite concerned. They are giving me lots of pills for this: senna, colace, laxatives, etc... Nada.
     The nurse told me that it was especially important to have a bowel movement today. So, I was trying to force myself to eat some actual food this morning... thinking high intake equals high output... or some such nonsense. After eating the obligatory Jello and applesauce, I began a daring move to the eggs and bacon. It was a valiant effort, but I just couldn't swallow it. Next, I thought to myself how I was strangely able to eat a bag of Cheetos last night. So, I went for the Cheetos.
     Cheetos and Jello don't mix. I quickly hollered for the Ativan, but I was too late... I vomited what little food I had. *sigh*
     The nurse recommended I try some ensure, so I'll try that next.

     The other side effect has been fevers! I've been having daily and nightly fevers since I have arrived here. Sometime I just coast at 100.4, and sometimes I spike higher. Even if the fevers are not worthy for intervention, they are quite annoying! They give me such a headache, and I can't take any Tylenol because they want me to get a high enough fever for a blood culture... or something (They give you Tylenol if it goes high enough, of course).
     The fevers also give me this pain behind the eyes, and make it quite hard to focus on anything.


     Anyhow, it's all a bunch of mini-battles. Now onto the larger one: The VP-16! (Update Later)

[10-29-08] Day of Rest (Day -5)

[10:54am]
     It's funny how they call non-chemo days: "day of rest" -- every day is a day of rest. You get bags and bags and bags of medicine each and every day, except add a few bags for those chemo days. Oh well, maybe if I were adversely effected by the chemo a bit more I'd have a different idea. I love tempting fate. :P

     I'm still in a double room -- they told me that they'd move me in a single when my counts were too low. Darn it! I really want one of those exercise bikes, but there's no room for one in a double room. And, of course, once my counts are down, would I really be up for a bike ride?
     Hmm... If you can ride the bike, then your counts aren't down and you don't need an isolation room. If your counts are down, then you can get a single room to ride the bike, but you'd be too tired to ride the bike. Almost a catch-22.

     So, here's my schedule until transplant:
     Day -5: Day of Rest
     Day -4: Whopping dose of VP-16
     Day -3: Day of rest
     Day -2: Whopping dose of my dreaded nemesis: Cytoxan! Noooo
     Day -1: Day of Rest
     Day 0: Transplant (followed by 2-3 weeks of recovery)

     The interesting thing is that my roommate seems to be going through (almost) the same regimen (without the Gemcitabine & Navelbine). Today he gets his transplant, and the day after he is discharged! Is he getting lower doses that me? Is his insurance inferior? I know G&N were pretty hardcore, but not enough to justify an extra 2-3 weeks for recovery!
     He does have non-hodgkin's lymphoma -- maybe that's different.

     On another note, I had BACON today! So I must be feeling better. Darn. I want that bike! :P

[10-28-08] BCNU (Day -6)

[10:57pm]
     Last night I got two blood transfusions, so I have a bit more energy today. Apparently, my hematocrit dropped two points (to 25) in only one day! These drugs are impressive!
     So, using my newfound energy, I set up my x-box, my computer, and various other things, and got situated in my room. They were supposed to move me into a single room, but instead they decided to keep me in here until my white blood cells start to plummet.

     Anyhow, I think my stomach has transcended to a perpetual state of ickiness. Also, I'm starting to get pain in my mouth (right behind my tongue) whenever I talk. Soon I may not be able to talk, or take my pills. I mean, the purpose of the psychiatric consult was to determine which pills I will be able to take in liquid form, and substitutes for those I cannot.
     Scary, huh?

     And now I've been told that I should be starting BCNU at 1:00pm. The doctor said, "You will not like it -- patients in your situation usually think it's the worst." He then told me how the drug causes severe agitation because it can cross the blood-brain barrier, due to the fact that it is delivered in an alcohol solution. Patients have restless legs, twitches, and bad jaw pain (clenching?) -- hence the Haldol.
     A little under two hours before I am subjected to that; I am spooked.

     But still, in Austin fashion -- BRING IT!


[8:10pm]
     Bah, the BCNU was baby food -- it was Gerber, my friends. Call it coincidence or not, but after the BCNU, my persistent nausea went away. Plus, I ate a good deal of my lunch! Who knows? Maybe it's waiting patiently for it to attack me unawares.

     When they administered the Haldol and Benadryl for the BCNU, I quickly found myself quite sedated. The nurse was describing the effects of the drug, but I had a hard time grasping all the details. In addition, when I tried to speak, I think my voice came out somewhat strained or slurred; it was difficult to talk. Then, I fell asleep.
     Occasionally, they would wake me up for vitals and whatnot, but I immediately fell asleep again. In fact, I pretty much slept through the whole thing. Not bad!
     So I didn't get all irritated and agitated, and I didn't snap at anyone (including my mom) -- you couldn't really picture me snapping at people, could you?

     Some time later, I felt like eating the rest of my dinner: a feast consisting of pears, 3 jellos, 2 applesauces, and a dinner roll. For the first time since Friday night, I ate most of it! Tomorrow, I will try a light meal and see how it goes.
     The doctor was talking about putting me on a nutrition IV, but I think I'd like to avoid that if possible. Though I basically haven't eaten for a couple of days -- maybe they draw the line at 3 days. But, the way I'm feeling right now, I should be eating bacon by tomorrow -- perhaps even BACON!

     So it seems that the BCNU is a cakewalk. Also, that the transfusions are very useful. My energy is somewhat back; my nausea is gone. So... sweet! This SCT may be easier than I think.

     All I have to worry about it my mom tripping over my IV line again. Yes, the pole almost came crashing down, and a pump module with it's IV bag were ripped to the floor. Fortunately, nothing was "pulled" on my end.
     To mom's credit, the nurse almost did it as well. But to the nurse's credit, I was somewhat fumbling with the line as well.

     Right now, I've got the xbox 360 set up. So, back to the games! Wahoo!

[10-27-08] The Early Bird

[2:37pm]
     Yesterday was crazy.

     It started with my dose of Gemcitabine and Navelbine -- both drugs that I tolerated relatively well last time... well, except for a headache.
     Yesterday started out no differently, but it quickly turned South. It started out with some pretty bad bathroom-related problems, then ended up turning into some pretty annoying nausea and general icky feeling.
     At around 8pm, the nausea got worse and I could feel that familiar burning sensation in my eyes -- I knew I had a fever. The temperature read 100.4, so I decided to take some Tylenol and check again in 20 minutes or so. The second reading was 101.4, so we decided to head to Stanford.
     The thing is: I knew that this fever was due to the Gemcitabine/NAvelbine -- in fact, my nurse told me to ignore any fevers that I may get for the first dose of these two drugs. But, since I am so close to the transplant time, it's better safe than sorry.

     We walked right into the BMT unit and I presented myself. I told the nurse that I was instructed to report to the BMT unit if I had a fever for my second dose of this chemo, and that it was probably caused by the chemo. Apparently, I should've called first. Strange, I thought they explicitly that I didn't need to call first -- "Do not pass go, head straight to BMT ward."
     But that wasn't the first mistake I made this evening. I also shouldn't have taken the Tylenol -- since my fever could be naturally be higher than it was at present. Then the nurse asked: "Where's your mask?" Apparently, I was supposed to be wearing it this week, even though my white counts were perfectly fine. Ack! Oh well...

     So, the nurse decided to admit me. She also had to call the attending physician -- who had to drive from her home in San Francisco at 10:30pm -- to evaluate me. By then my fever was 102.0.
     They hooked me up on various fluids and anti-biotics, and re-checked my vitals every 20 minutes or so. I also had more Tylenol, but my fever would not budge one bit. In addition, my nausea seemed to get worse along with the fever -- I couldn't lie down because that would make me feel sick. Mostly, I tried not to move. Then, my mom went home to collect my belongings and bring them to the hospital.
     Things got even more frantic when they noticed that my blood pressure had dropped to 86/40, when it was normally 125/70. They restricted me to my bed and kept asking whether the room was spinning or that I felt dizzy. I only felt a bit dizzy when I stood up, but I did feel a bit weird. Then more bags of stuff were brought in and I had my vitals all throughout. They also did some blood cultures and urinanalysis.

     Long story short: it was a very tough night. I had an interruption every 15 minutes or so -- it made sleep quite difficult.

     Fortunately, my fever broke around 9:00am this morning and I feel much better. My blood pressure is normal. All that's left is a food-phobia and headache. By food-phobia, I mean that the mere concept of eating real food makes me feel a bit sick. Get this: I had eggs and bacon this morning, and I didn't eat anything, including the bacon! You know there's something wrong when I don't eat my beloved bacon.
     So, all I've been eating today is Jello and Apple Sauce. I'm actually quite hungry, but what can I do?
     The strange thing is that I've never had an aversion to food, even throughout all the chemo I've had. Why start now? Gemcitabine and Navelbine are truly vicious drugs.

     So, anyhow, I've been admitted into the BMT ward and will be placed in my isolation room later today. My in-patient BMT starts early!
     I think to myself: After last night, I'm in for quite a tough ride. It's only going to get worse from here on out.

     It brings to mind what my doctor said when he went on rounds today. He told me about how they like to do psychiatric consults early in the BMT process, so that "you can answer coherently because you wont be on a bunch of pain medications yet." So it looks like I can expect a level of pain that would require a lot of gnarly medications. Eep!

[5:53pm]
     Mwa ha ha! Large interweb pipes; Austin happy.

[10-25-08] Bad Daydreams

[1:20pm]
     We drove all the way down to Stanford to find out that my infusion was scheduled for Sunday, not Saturday! Whoops! We were told, most recently, that the appointment was Saturday, but you've always got to double check everything... be ever vigilant with health care.
     There was those times my cisplatin dose was less than required... and the countless times I've had to specify that it was Hodgkin's Lymphoma, not non-Hodgkins Lymphoma.

     On another subject, my hair is starting to grow back quite rapidly. My head no longer feels smooth, but scruff -- the change is nice. And I've got my chin hairs back! Still... I don't like it. I want maintain my chemo intensity.
     In addition, I had some trouble sleeping last night because I was itching furiously. Still, the itch persists. It's the all-too-familiar Hodgkin's coming back to taunt me and remind me that he's still there. Persistent little bugger.

     Now, maybe it's because my spirits have been a bit low lately... But, with the itch coming back, it feels like all this has been for nothing. 8 months of small chemo; doing nothing but making the tumor more resistant to chemo. Bah.

     Then, I always ask myself: What if the BMT doesn't kill the tumor? or... What if, after a successful BMT, the tumor returns?
     I start to daydream about that possible future... I'd like to think I'd spend my last days bartending on the Galapagos islands, but that's not really me -- is it?
     I'd probably jump from clinical study to clinical study, subjecting myself to all sorts of interesting drugs in order to extend life. Then there's be the last-ditch allogeneic (bone marrow from someone else) transplant.
     I wouldn't really accomplish my dreams, I suppose. I'd have to cancel grad school to accomodate treatment. Or, if I ignored treatment entirely, would I really be able to afford grad school? Or, for that matter, would it even make sense?
     So, I'd settle for a job in the here and now. Instead of learning graphics programming, AI, and general video game programming, I'd focus on more practical (in-demand) skills such as database programming, and network programming. That type of programming is actually a bit easier for me, so I'd be able to be marketable relatively soon.
     So, I'd get a low-paying programming job. Which would be great, for a time... but then the illness would present a problem. Treatment may have to be intensified, and I'd probably be unable to work and go on disability or something.
     At this time, I'd feel like I have to contribute to society somehow. I mean, I haven't had my programming job long enough to make real substantial developments that would benefit many. So, maybe I'd start writing a novel... or composing a piece of music... something to leave behind.
     Too bad I'm infertile and didn't have enough time to become financially capable of starting a family. That's always been my primary goal in life. A meaningful career I love and enjoy comes in second. To lose both... sucks.
     Given that possibility, how should I act now?

     Anyhow, I'll stop there. That's my career/goals daydream, I also have a relationship one, but that's a bit more depressing. Then there's a bucket-list one, a cancer-survivor one, the ultra happy one, and more. I daydream a lot. Good or bad, these are my daydreams, and I'm not ashamed of them. I'm not trying to focus on the negative or anything, but this is what I'm thinking, and I promised to write what I'm thinking... And with the itching returning, I've been thinking about the negative possibilities.


     On an entirely different note, there was a glitch in my re-admission process which caused it to be delayed by 5 days. And, as luck would have it, all the classes I need or that would be practical have been filled. So I'm waitlisted for all my classes -- yet more to stress about.
     Hence the bad mood. Excuse me.

[10-23-08] Mariska!

[10:43pm]
     I got a new niece! Mariska was born today in the early afternoon, and everyone is fine and happy. I haven't seen her yet, but I plan to get a ride down to Santa Cruz for a day visit on Friday -- to hell with the 20 mile radius, I feel quite nominal.

     As for me, well I've just been playing my video games... I'm trying to waste as much time as possible -- I can't wait to get this started! It's like when you're a kid and you're waiting for Christmas... a valid strategy is to sleep excessively :P

     To bad I can't sleep to well. It's funny: most people look at their alarm clock with a sense of dread in the morning. I do as well, but in a way that is totally different than you'd expect. One typically says, "Oh man, it's almost 7:00am -- I only have ten more minutes of sleep." I, on the other hand, say, "Oh man, it's almost 7:00am -- last time I was awake was at 6:40am.. it's only been 10 minutes, so little time has passed."

     Oh well. It's mostly the mattress, I think. Perhaps I should score a Tempurpedic. But those hospital beds were darn comfortable... I wonder how I'll sleep there... So much anticipation!

[10-21-08] It starts...

[4:09pm]
     The BMT process has officially started.

     Today, I received a dose of Gemcitabine and Vinorelbine (Navelbine). Unlike all the other chemotherapy drugs I will take, these two are the only ones which will be a "normal" dose... I believe Gemcitabine is used for pancreatic cancer, and I have received a comparable dose. Because of this, I expected these drugs to be without side-effects...
     I was slightly wrong -- after an hour or so, I got that familiar "delicate stomach" feeling and a headache. The headache may be due to exertion, however -- I can tell that my red counts have been on a slow decline. (A few days ago, I had my counts. I was better than I was pre-transfusion, but still moderately anemic.)
     It was nice that the infusions together were under an hour.

     Also, I was equipped with a continuous mini-IV pump. Heperin is currently flowing into my catheter at a measly 0.5ml per hour! This is to prevent those pesky blood clots. I have it attached like a fanny pack -- the nurse mentioned holding it like a purse, but what sane male would do that? It's not as bad as I thought; it is pretty portable (only 100ml bag) and maintenance-free.
     In fact, the nurse spent quite some time explaining how to control the pump in case of any trouble -- it is very intuitive. She repeated her instructions several times -- I guess some cancer patients are so zonked out that it is necessary. I guess I will be one of them soon enough.

     Since today marked the first day of my BMT, many nurses expressed their certainty of a cure or an easy transplant. I found such optimism a little bit disturbing. Firstly, both assertions of certainty are not statistically accurate -- I'd say you need 98% or greater to use the terms "will be" or "certain." Otherwise, I'd recommend "believe," "feel," or "hope."
     Secondly, it makes sense that the nurses have a solid grasp of cure rates and problem-free BMTs. This being true, then it seems that the nurses were willfully expressing a false belief of certainty in a positive outcome. I'm sure they believe that I will be cured or do fine, but I doubt their certainty.
     So, why were they doing this? Is saying stuff like "you will be fine" the polite thing to do? Will reality be changed by denying uncertainty? OF course not. If anything, I believe that recognizing potential obstacles and challenges will help us deal with the future. I want to be told to expect a "shitty time" and to be reminded that a remission post-BMT is probable, but not certain. I don't want superstition to be a part of my treatment.
     Don't get me wrong -- I'm not denying the existence of self-fulfilling prophecies. For example, I believe that going into a test with a positive attitude will yield higher scores. But a positive attitude strengthening the good cells and making the bad cells commit suicide... nah.

     Perhaps my lack of faith is a character flaw... but I don't feel that way. I have thought a lot about my spirituality and beliefs through all of this; the prospect of death can do that. Oddly enough, I find my lack of spirituality/faith a source of strength. I am comforted in a grounded and absolute reality, and I find the prospect of nonexistence... peaceful. It certainly didn't bug me before I was born. :P

     So, although I may not be certain of the outcome... I am absolutely certain that everything will work out fine in the end. Strange, huh? An absence of faith is a sort of faith in itself.

     Anyhow, for good measure, I should probably counter all that philosophy with something superficial... hmm... Oh, I can't have beer anymore! Noooooooooooooooooooooooo... I'm gonna miss that. When I come out of this, I'll probably be a lightweight with my alcohol -- happy with just a six-pack. You betcha!~

[10-19-08] Living in Stanford Area!

[6:59pm]
     I just got my laptop connected to the wireless internet in my new (temporary) home! Yup, I am currently living in the Stanford area!

     As I started unpacking my stuff, I realized that I had forgotten a few absolutely necessary things:
   1: PC Primary Power Cable
   2: Stereo Mini (male to male) Cable
   3: My CD Wallet

     *sigh* I always do this. Oh well, fortunately, I can salvage the PC primary power cable from my laptop power supply for the time being. Also, I can use a headphone with a female to female stereo coupler... so, I will be able to play my xbox. *whew* Gotta love emergency audio adapters!
     Still, it would be nice to have everything in order.

     See, I've been making a list and constructing my 6-week mandatory-item nomad pack. What do I need to survive in any environment for a period of 6 weeks? Not surprisingly, technology is a large part of it.

     Anyhow, I've got a lot of work to do before I can fall into blissful slumber. (As you can probably guess, getting my computer up and running on the internet is the first item in that list) :P

     Ta ta for now! Chemo in two days! Woohoo!

[10-17-08] E-Day

[7:51pm]
     Oct 17th... an historical day for anyone who has lived in the bay area. More specifically, around 5pm on Oct 17th, 1989. Can you guess it? Yup, it's Earthquake Day! Today is the day of the devastating Loma Prieta Earthquake, not to be confused with the San Fransisco Earthquake (in 1906). This 1989 earthquake has an epicenter in Santa Cruz County, baby!
     As you can tell, I'm proud to have been in it. Does that seem strange? I mean, it's not like surviving the 1989 earthquake took any talent or skill. Nevertheless, it's a part of my history... and despite the devastation involved, I look upon the experience fondly. In fact, I thought it was cool at the time; the shaking was fun.

     Anyway...

     I had an appointment at Stanford today. I felt that I had enough stamina to ride my motorcycle there and back. I did, but that doesn't mean I'm not beat! What a trek! Especially with the traffic. *ahem* I digress...

     Basically, this appointment was to overview the next phase of the BMT process and obtain the final doctor's "go ahead."
     My doctor said everything looked fine, and that I was ready to start the chemo on Tuesday! I am still anemic (HCT 27, HGB 10), but my white counts were good. So, yeah, the next phase is a go. It was a very short appointment.

     Then, my scheduling nurse came in and went over the some treatment details and the side-effects associated with very high doses with these drugs.
     The first two drugs, G and N, are fairly innocuous compared with the other drugs. I should expect nausea/vomiting on a level comparable with ICE or Stanford V -- no problem. The big downside is that they are very concerned with mini blot clots perforating my liver. Strange, huh? So, to prevent liver damage, I have to be on a continuous IV of heparin over the next week (starting Tuesday). So I have to carry a little bag and pump wherever I go. Bah, something more to get in the way of one of my favorite things: starting the day off with a refreshing hot shower. How am I gonna manage that? I already have to spend quite some time waterproofing my catheter dressing each morning.

     Next comes the BCNU (Carmustine), which is administered when I am admitted. From what I gather, this is the most hardcore of the drugs that I will receive. Other than the typical side-effects, this one has some strange effects that will occur for a short duration while it is being administered.
     My nurse says to expect a severe headache for up to 24 hours... OK, no problem. Then she tells me to expect to be extremely irritated while the drug is being delivered. I'm doubtful at first: I've heard about chemo causing this sort of thing before, but never really experienced it myself. But, apparently, the nurses go as far as recommending that loved ones leave the room. My nurse has personally heard shouting, cursing, and general meanness from people who have received this first-hand.
     Still, I can't imagine getting all angry just because of a drug. But then, get this: she tells me that they prescribe a dose of Haldol to patients before they receive BCNU. Haldol! The extremely hardcore sedative anti-psychotic! How's that for strange! This is the stuff they give to patients so unruly that they have to be doped up so that they don't hurt themselves or others.
     Ok, maybe I can see myself a little irritated then. I mean, if they're giving you Haldol for cryin' out loud, it must be pretty bad.

     Then, the next two drugs are VP-16 and Cytoxan. Same chemicals, but at ridiculous doses this time. Well, the Cytoxan I will receive will only be at a slightly higher dose than it was for my mobilization, but that was a ridiculous dose anyways.
     Other that more severe versions of the typical side-effects, I can expect (read: very common) a large amount of skin irritation and mouth sores. The skin problems can get so severe it peels off (and is painful), and the mouth sores can get so bad I may not be able to eat. Both usually requires some amount of pain medication, ranging from moderate, to the IV morphine clicker.

     As for the transplant itself, it is pretty uneventful. A 5 minute IV delivery of my old baby stem cells. I could feel a cold rush, some chest pain, a little anxiety, and smell like garlic (preservative) for a while.

     And that's that! Sounds like fun, eh? :P

[10-15-08] Birthday Day

[10:58pm]
     Today I did nothing... it was all I had hoped it would be. Nothing by conventional standards, that is: I played my new video game and read a little fantasy fiction.
     In other words, I've turned into a slacker. It's a bit annoying, in fact. A few days ago, I sat in front of my computer with the intent to learn something and progress in skills essential to my career path. I couldn't motivate myself to do so.
     Under normal circumstances, it is difficult to delay gratification for future goals. In my circumstances... well, I'd rather wait for a job interview before I buy a new business suit. That money could be used for fun, instead!

     Regardless, I am becoming more adept at being a slacker. Sounds strange, huh? I mean, how hard is it to be lazy? Actually, it was quite distressing at first. I felt this huge pressure to accomplish things. Not to mention the enormous guilt attached to myself when I fail to accomplish those things. Then, there's the conquest of boredom: one needs to keep oneself constantly entertained... all those extra hours of the day.
     I remember this time, after finals, when I found myself scraping off sticker adhesive off of my dorm door. I was moving out and I had to leave the dorm in pristine condition. However, I was doing this immediately after my last final (In perhaps my most difficult set of finals ever). I recall setting my backpack next to my door and truly enjoying removing that adhesive... with a blissful sense of freedom.

     My point is that anything can seem fun when you've spent 100% of your time on work. I didn't have time to eat or socialize or anything during those finals.
     Now, with all the spare time in the world, the equation works in reverse. One becomes extra picky about the quality of the television shows that the watch, the video games that they play, or the books that they read -- with more supply, comes higher standards.

     So conquering boredom can be difficult at times.

     Fortunately, I've encountered an exception book to read and an exception game to play. So I'm good... for now :P
     But, of course, I'm not going to hole myself up! Wednesdays aren't opportune for birthday celebrations -- there'll be fun on Saturday.

[10-13-08] Eek!

[1:34pm]
     Eek! How'd I manage to miss my 10-11-08 post? Sorry about that! It's hard to maintain routine when you're away from home. And I've been away from home...

     I just got back a few hours ago. First, I spent the weekend with Liz in Berkeley, then a day at my sister's house.

     Sometime last Thursday I realized two things: 1: I have enough energy to do things again! Including driving my motorcycle to Berkeley. And 2: The energy probably wont last, so I better take advantage of it.
     So, I drove to Berkeley and had a blast! Liz and I watched a few movies, ate some good food, had some good conversations, and rented a house! Yes, a *whole* house! It's a small house, of course, but total luxury for someone like me who is used to a 12'x12' dorm room. I even get an office and my own bathroom! :P Liz will move-in about a month before I do, since I'll probably be in Stanford until about Dec. 12th.
     Then I'll move-in, get settled, and return to school yet again! Here's to being a productive member of society!

     Speaking of which... time to slack off some more! I have my birthday in two days, then on the 17th I will return to Stanford for my pre-BMT appointment! Treatment starts on the 21st. Plus, my mom shows up on the 15th (from Kentucky)... so a lot of stuff is coming up!

     I'm looking forward to more chemo. I mean, I've got millions of little hairs on my head now -- that's not cool! Now is not the time for cellular springtime -- it is Winter!

[10-09-08] The Austin Pain Scale

[10:40pm]
     I've been spending the day cataloging my video game collection. What is the average rating? What is the genre? Is it multiplayer? I am preparing. Like a squirrel gathering acorns, I am saving my games for the winter ahead of me.

     Then, I think back to how Barbara said how I liked to "quantify the subjective." It's true; I do. In fact, I've been doing it since I was like 5 or so. I've always annoyed people by incessantly asking for a "favorite," "which would win", or a "top five." Kinda like that guy on High-Fidelity.

     Maybe I'll post a few of my neurotic lists, sometime. :P

     Anyhow, back to the conversation with Barbara... We began discussing this after a nurse looked at me skeptically when I described my status on the pain scale (due to Neupogen back pain). Yes, the pain scale, again.
     I obsess, I know. But it's such a perfect example: level of pain seems like such a subjective experience! There's no pain indicators attached to our heads or pain meters that we can attach to our brain stem. In addition, the nurses and doctors place such importance on the number that you give them. Naturally, I can't resist the challenge to quantify this.
     Back to the nurse. So I told her that I had a pain rating of 5 and she looked at me like I just picked my nose. How *dare* she question my objectivity! I then commented to Barbara, "If only she realized how much thought I put into accurately providing my pain rating."

     I then thought about actually writing it out. So, here it is:

     The pain scale is on an integer scale of 0-10, with nothing more than faces to assist in the self assessment.


     Although there are many different scales, this is the one I see the most in California hospitals. So, here's the criteria I use:

Pain 0: No Pain.
Pain 1: Detectable Pain. However, it is not sufficient enough to do anything about it. It is neither annoying or distracting. If a Tylenol and a glass of water was 2 feet away, you wouldn't take it.
Pain 2: Annoying Pain. You would take the Tylenol, but would have no problem watching TV or browsing the web. Not sufficient to distract you from your at-rest activities.
Pain 3: Distracting Pain. You would really like some medication at this point. If the Tylenol isn't near, this is where you'd start digging through your bathroom cabinet. Why not? You can't really enjoy watching TV, and reading a book is out of the question... This pain needs to be solved. Sleep would be possible at this level, but difficult.
Pain 4: Sleepless Pain. Medication is needed. Over-the-counter medications may dull the pain a little, but they wouldn't really help -- Vicodin would be nice. Sleep is very, very difficult at this level. Imagine not falling to sleep for at least three hours, then waking up every 30 minutes due to pain. At this level, I'd say getting 2.5 hours total of scattered sleep in a period of 8 hours is likely. (The pain scale, to me is a bit like the Richter scale: moving from 2 to 3 is a bigger step than moving from 1 to 2, and so on.)
Pain 5: Fidgety Pain. Narcotic medication is mandatory. If a doctor recommends Tylenol, then you should request a new doctor. If you are at home, without narcotic pain meds, then you'd probably start pondering the pain relief given by getting incredibly drunk or repeatedly banging your head against the wall. We're not in ER territory, but the pain is severe enough to cause you to constantly reposition yourself in an effort to reduce the pain -- fidgeting. Sleep is downright impossible.
Pain 6: Frantic Pain. Narcotics would help; Morphine would probably be best. If I were at home, then I'd consider going to the ER. It is a bit difficult to speak properly, due to abrupt spikes/stabs/pulses in the pain. You cannot stay still; you need relief.
Pain 7: Physiological Pain 1. Morphine is mandatory; go to ER at this level. This is where the pain is painfully obvious to doctors on a physiological level. Breathing and speaking become erratic, due to abrupt spikes/stabs/pulses in the pain. Envision grunting. Your pulse is way up.
Pain 8: Physiological Pain 2. Morphine may help slightly; something stronger may be best. All the previous physiological symptoms, but more so. Visibly trembling/shaking.
Pain 9: Physiological Pain 3. Something stronger than morphine is mandatory. All the previous physiological symptoms, but more so.
Pain 10: Fantasy Pain. The most pain you've ever experienced, or could fathom experiencing.


     Ah, I love to quantify.

[10-07-08] ... and time passes.

[9:33pm]
     With no treatments or medical appointments, I am allowed a few moments to stop and think about things. Most of the time I think about the future: making it through school... achieving a career... a family. Some of the time, I think about how much my path has derailed.
     This is why keeping busy can be a blessing. This is also why school was very helpful during my initial treatment. Gotta keep moving...

     But don't get me wrong -- my thoughts may be a bit deep right now, but I'm certain the BMT will be a success. I always daydream and evaluate possibilities. It's part of my personality; I always do it. What are the probabilities? How can we plan for all eventualities?

     For example, last Sunday I was talking to Liz about our carefree lifestyle. I mean, it certainly isn't carefree, but it should be. We stress about work, school, family, money... but when it comes right down to it, everything will be fine.
     To illustrate my point, I began to think about the worst possible scenario. I mean the worst: like a nuclear strike destroys California while I am out of state. Everyone I know is gone; everything I own is gone; I find myself in the metro station without a dime. I could work at Taco Bell, or as a bagger in the local grocer. It's not high-tech, but at least I could get the job quickly, and it would be enough to feed me. Not enough for rent, but I could sleep under the stars in the local redwood forest. If there's no jobs available, I'm sure there would be some government aid or something. No government aid? Even then, I'm certain I could figure things out.
     So if you're stressed out about a midterm, for example, you can think to yourself: It is alright if I fail this. In fact, it is alright if I fail school, lose my job, and get evicted. At least I have food. Even if I don't have food, at least I'm not in pain. If I am starving and in pain, well at least my family is alright. etc...etc... Things could be always be worse... always.
     Kinda makes the midterm seem a little less important. Kinda makes life seem like it is made up of a bunch of little things, instead of all big things.

     My point is that thinking about how things can get worse can make one appreciate the present, maybe even make it a bit less stressful. That is, as long as you don't get all depressed and emo about it; gotta keep things in perspective, of course.
     But, then again, keeping busy prevents you from thinking at all. And that's nice too.

[10-05-08] Enjoy it!

[7:48pm]
     What a nice weekend I just had in Palo Alto! On Saturday, Liz and I went shopping, watched a movie (Religulous), and ate a fancy dinner. Today, we ate a nice breakfast, created a beautiful ceramic plate, and watched another movie (Blindness). Quite an excellent way to celebrate 8 months!
     The arts and crafts portion was kinda neat. You basically walk into the shop, pick out a piece of ceramic art, and then paint it with glaze. They charge you for the art and paint, then you paint it and they fire it in the kilon. You pick up your finished masterpiece days later. Pretty nifty.
     As for the movies, Blindness was a bit disturbappointing and Religulous was delightfully thought provoking.

     Nice to digress from cancer for a bit.

     Actually, I'm going to do just that; I don't feel like talking about cancer right now. So I wont. Except a quick update: they collected all the stem cells they needed on Friday and gave me two units of blood. I feel human again! Joy! I loooove bloood. Plus, at this point, I have a two week vacation from all health/cancer related stuff! After that comes the hard part. But until then...

     I'm going to enjoy my reprieve! (Edit: Respite?)

[10-03-08] Apheresis

[11:48am]
     I am currently being apheresicized at Stanford; it is a fascinating process. The machines (apheresicizometers) look like they were made in the 50's -- they are huge clunky things with large spinning knobs; the bottom half looks like a freezer. My nurse says that my apheresization (ok, I'll stop now) should take about three hours.
      *ahem*

     Anyhow, the catheter is working great! Joy! So, the surgery was definitely worth it! And it looks like I'll be able to sleep on my side again. Joy, Joy! And after they've collected enough cells, I will no longer need to get labs done or inject Neupogen! Also, I will get 2 units of bloooooooooooood today! Joy, joy, joy!
     It's the little things, folks; the beaten dog analogy. For example, earlier I thought to myself: "This is great! My back isn't killing me!"

     Oy, they gave me Benadryl for the pre-transfusion. So I need to nap now.

     

[10-02-08] Catheter Placement #2

[10:21pm]
     Things have been ridiculous...

     First, I've been getting very little sleep lately. Catheter pain has been preventing me from sleeping on my side. Since I can only sleep on my side, this has been problematic for the past week or so. But last night was ridiculous.
     If it wasn't catheter pain keeping me up, then it was my insane Neupogen-related back pain. If it wasn't that, it was a slight fever (100.3). And, of course, we were on tiptoes because a fever of 100.5 or above merits an ER visit. So I got next to no sleep last night.

     Second, I am not supposed to eat 12 hours before the procedure. So no food for me after midnight (what am I, a gremlin?).

     Accordingly, you have a starving neutropenic anemic patient that is just recovering from a fever and complete lack of sleep. That is my explanation for my decrepit state today. AFter the 2nd transfusion: feeling much better. After no sleep and no food: feeling not so good.
     To articulate, I recall lying on the hospital bed. My back was killing me, so I repositioned myself so that I was sitting upright. That act alone raised my pulse to 120, gave me an insta-headache (due to lack of oxygen to brain), broke a sweat, and caused me to wheeze rapidly for 5 minutes or so.
     Yes, it was ridiculous! I had to take 3 breaks on the way to my procedure and I was pushing myself so hard that I got lost. Barbara commented that I wasn't thinking straight due to lack of oxygen. From that point on, I was so tired I was docile. You could have said that Palin was smarter than Einstein and I probably would've nodded noncommittally.

     The procedure itself was much better than last time. They couldn't figure out why I had catheter pain and defective blood return -- the x-rays all looked perfect. Regardless, the best course of action was decided: remove the "defective" catheter and place a new one on the other side of the chest.
     So that's what they did.

     Also, I made sure to articulate that lots of pain was not acceptable. They want to distinguish between sharp pain and pulling/pushing. For some reason, they believe that "dull" pain associated with pushing/pulling did not exist -- that the mind somehow interpreted this weird pushing feeling as pain or something. This was told to me by several nurses and the doctor, so I took it seriously. I remember sitting there on the table saying, "Yup that's pain. It's a dull pain, and I know you're pushing/pulling, but it's still pain. Yup, that hurts. And I'm trying to be especially objective here." Or some such.
     Still, everything went wonderfully. In fact, the catheter was placed on the right side of my chest with little pain at all. Removing the previous catheter... that's where extra time was spent. Something was wrong about that side; maybe it's because the big tumor is there... or my veins are sensitive on that side or something. Who knows.
     And the nurses were crazy. They were all female jokesters -- casually engaging in banter while singing along to their Mo'town CD. I recall on several occasions them saying something like: "Glad you probably wont remember this; I'd hate to see the look on your mom's face when you tell her that you were cut up by a bunch of crazy dancin' nurses." I assured them that I would remember everything; they didn't believe me.
     At one point, the doctor asked the nurse "how is he doing?" (The doctor can't see my head because a big blue sheet is draped over it). She replied, "Wow, he's actually crying!" I heard the doctor, startled, say "what?!?" And I said, "Hey, I'm not crying!" The nurse smiled.
     At another point, they tried to get me to sing along with a Mo'town song. I told them: "You haven't given me nearly enough drugs to get me to do that!" They laughed and said, "Is that a challenge?" Flatly, I replied, "Yes." Then I pointed out the ethics of making a drugged patient entertain the nurses.


     After the procedure, I got a call from the apheresis nurse: "You've been having lots of bone pain, right?"
     "How did you know?"
     "Your white blood count went from 1 to 12 in a single day; your marrow has been working overtime."

     So, yay! I get apheresis tomorrow! Naturally, they want us there at 7:30am. So I'll have to get up at 5 or so. I better get some sleep.

[10-01-08] Blood and Fire

[2:49pm]
     Bloooooooood... need more bloooooooood.
     I've had my first taste of it; I feel like a vampire. I want more. The effect 250ml of blood has on someone who needs it is profound. I didn't realize it until I got the 2nd transfusion, but I really needed it.
     Yes, the 2nd one... I'll back up.

     Yesterday, I started with a 2 hour (1 unit) transfusion followed my my normal blood work at another lab. When I got home, I was exhausted, and fell right to sleep. I awoke to a phone call from one of my nurses. "You need another transfusion," she said. Apparently my tiredness correlated quite well with my blood results. Here they are:

   Hematocrit 24.3 -> 23.9 (after transfusion)
   Hemoglobin 8.5 -> 8.6
   WBC 0.3 -> 0.2

     Weird, huh? Instead of going up, my hematocrit actually went down! I suppose I'm right at the Cytoxan nadir; imagine what my levels would be if I had no transfusion!

     So, today I got another unit of blood. And, unlike yesterday, I actually feel a little more energetic. It's actually mostly mental; I still get just about as winded in my walk to the fridge or bathroom. But what I really notice is my improved concentration and newfound clarity of thought -- I must've been a dunce these past days! And I didn't even realize it!


     Next topic: catheter. I hate this catheter. I spend all this time maintaining it and it doesn't even work properly. I mean, the Cytoxan had to be administered via IV because the darn thing wouldn't give blood return. Yesterday, another attempt was made to achieve blood return: it failed. So, I called my Stanford nurse and tried to get this darn thing fixed.
     Oh, and blood return isn't the main reason. The truth is that it hurts if I try to lay on either my left or right side. I guess it's because my arms are "squishing" my chest or something? Regardless, I've had many nights of bad/little sleep because the darn thing hurts. And I can't sleep on my stomach or back -- that hurts my stomach! So yet again I am faced a similar dilemma: sleep with pain or no sleep. I've been having to stay up late balancing that equation... no fun.

     The good news is that my nurse has scheduled me for a procedure tomorrow! Yay! They're actually going to replace the whole catheter with another one, and use a wire or something to help facilitate it. So it should be a quicker procedure than the last one. I believe it will require conscious sedation or something, because they're telling me not to eat after midnight and whatnot.
     Also, Barbara says she's on point with getting my doctors to be liberal with the pain meds. I don't want another couple hours of me complaining (to annoyed staff, I'm sure) that I'm in pain.
     The doctor usually tells me that I wont feel any pain before the procedure. When he does this, I'm doing to ask him to tell me his full name, date of birth, and social security number during the procedure. If he's given me enough meds (like he says he will), then I will forget all of it. Otherwise, I will try to comfort my post-trauma with a little identity theft spending spree :P
     Last time, they told me that I wouldn't feel a thing and would most likely forget the procedure. P-shaw! I could recite most of the music tracks on that mix CD they were playing (mostly, Beach Boys, btw).

     Now that I think about it, the Beach Boys are pretty good. I never realized that until I was forced to listen, in detail, to their music. They have some really melodic slow songs.
     I digress.

     Last subject: Back Pain.
     I think I figured out why I had that ridiculous back pain ER visit a while ago. It was because I was given Neulasta (an extended version of Neupogen). I just started feeling the similar pain yesterday night. Fortunately, it wasn't nearly as bad as last time, but still bad enough so that two Vicodin won't get rid of it (helps, though).
     The pain went away this morning, then came back in the middle of my transfusion. Fortunately, my doctor approved some Vicodin for me and I got a prescription called in. Hopefully it will help; if the pain gets any worse I may be screwed.

     Believe it or not, my Stanford nurse explains that the pain may be a good thing. It seems that a shot of Neupogen is more effective when more white blood cells are present. In addition, when Neupogen causes your marrow to "work" to make more white blood cells there can be pain. The more your marrow works, the more pain (in some people).
     For example, if I had a WBC of 0.1 and took Neupogen, then I would be lucky to get a WBC of 0.3 on the next day. Plus, I probably wouldn't feel any bone pain because my marrow isn't working that hard.
     On the other hard, if I took Neupogen with a WBC of 10. Then I could get a WBC of 20 on the next day; my marrow would be smokin'! And there would be a lot of pain. This is what happened after ICE #1 and I had to go to the ER: I was given Neulasta preemptively so that I could get more ICE within two weeks. My WBC at the time was 9, I believe.
     Oh, and guess where the most WBC producing marrow is? The region around the lower back...so says my nurse, but I'm still skeptical. Regardless, the lower back is up there, I'm sure.

     So, even though I had a WBC of 0.3 yesterday. My nurse is willing to bet that this number jumped dramatically, as indicated by the pain.