[6-22-2014] Sarcoidosis Verified (Day +2039)

The pathology report came in: Sarcoidosis verified! I guess that puts me back at 2039 days cancer free :)

I sort of feel like the original "boy who cried wolf." Except, I have to explain to the villagers that "Well, there wasn't actually a wolf. It's just that the doctor's thought it was far more likely than sarcoidosis." Still, better to be wolf-free and a bit embarrassed than the other way around.

Sorry for the delay in putting this out there. After finding out, it was as if all my stress/worry was somehow supporting me. When it goes away, it takes a few days to re-adjust and re-orient oneself. It's kind of like after finals, but more intense.

Anyhow, I have a followup appointment with my oncologist on Monday. She's going to set me up with a lung doctor. Even though there isn't a problem in my lungs, these doctors are apparently also sarcoidosis specialists, so they should be the best at figuring out next steps.

I also have a followup with my surgeon on Wednesday. Hopefully they'll outline how long it'll take to heal/recover from the surgery. I still feel like I have a sort of golfball in my throat. It's rather annoying, but not painful or swelling or anything. From what I gather, it's just scar tissue that'll take a while to go away. Bah.

[6-15-2014] Sarcoidosis Indicated

It looks like good news! The surgeon said the cells look more like sarcoidosis than lymphoma! It's all preliminary until the pathology report comes back, but this is very promising!

Until my last post, I was convinced I either had a relapse or a new sort of cancer. Here's why:

• All the symptoms I previously associated with lymphoma. Night sweats, itching, plus mild fevers/fatigue. Of course, these symptoms can also be symptoms of sarcoidosis. 
• The metabolism of the lymph nodes (SUV) was around 16. My surgeon told me this was unusually high for sarcoidosis, so he felt cancer was more likely here. 
• Given my symptoms and my history, my oncologist also felt that relapse/cancer was more likely.  It also said this on my PET/CT report. 

The funny thing was, in my last post, I felt a million times better because I thought I had presented with erythema nodusum. It turns out that it was just a pimple! Oh well, even though it was unfounded, the injection of faith had very good timing. 

Just five more days and we'll have definitive results. Fingers crossed, but I'm optimistic! What an emotional roller coaster this week has been!

[6-13-2014] My bet's on sarcoidosis.

Last night I had night sweats. Not the it-could-be-hot sort of night sweats, but the dire night sweat, where the bed is drenched and you have to lay down a towel to get to sleep. These were the same sort of night sweats I had before my initial diagnosis of Hodgkin's Lymphoma.

The strange thing was that is was OK with it. I didn't panic or anything, and I think that's because of a little sore I noticed last night. I don't want to get my hopes up, but I think it could be mild erythema nodosum, which is a symptom of sarcoidosis and not Hodgkin's Lymphoma.

So I'm actually thinking it's sarcoidosis at this point, and I don't actually have lymphoma. We'll see.

Update (8:00am)
Surgery is in a few hours. I'm managed to stay away from all delicious water, so it looks like everything is a go.

Update 2 (1:49pm)
Surgery delayed. It was scheduled for 11:30, but the operation ahead of me had a complication,  so it looks like it'll be at least another hour before we get started. Hungry and bored...

Update 3 (2:10pm)
Anesthesiologist stopped by.  It'll be about 35 minutes for sure. I told him, incidentally, how I always remember my conscious sedation appointments and he said "Ah, you're not a cheap date,  then.  Fortunately, we're using general for this one. "

[6-12-2014] The Waters of your Homeland

As of eight minutes ago, I can no longer have food or water or medicine or anything. My stomach needs to be COMPLETELY empty. I can tolerate the bit about the food, but water is a different story. I frequently get up in the middle of the night thirsty and half-asleep, needing water. Given that the biopsy will be cancelled if I drink any water, I need to ensure that I do not.

So, I dumped out the water bottle next to my bed, and the secondary water bottle next to my workstation. I put clothes on the upstairs faucets in the house. This way, if I groggily walk into the bathroom for water, I'll be momentarily confused as to why there are CLOTHES in my sink. I'll shock myself into consciousness and in that moment, I'll realize that I need to deprive myself of wonderful, wonderful water. See? I'm already missing it!

Pretty soon, I'll be like the characters in Dune, telling mythical tales about places far away where water runs plenty and literally comes flowing out of holes in the walls! I feel parched... ;)

Anyhow, the biopsy is tomorrow. Time for bed.

Oh, and one more thing on an unrelated note. After trying to reschedule my final for a THIRD time, my professor generously allowed me to waive the final! Apparently, since I had such high homework scores, I'd have to do unrealistically bad on the final to fail the class. Since I took the class for credit, a "close enough" was acceptable here. So yay, and here I was actually considering lugging my notes and textbook to surgery!

[6-11-2014] Ditched work to arrange for a biopsy and a car.

What a crazy day! Here's what I did: 

• [7:30-1:30] Work. 
• [1:40-2:40] Arrive at cardio-thoracic surgery for 2pm consult with surgeon. Wait. 
• [2:40-3:00] Consult with surgeon. 
• [3:00-3:30] Wait to talk to assistants. They're busy, so schedule appointment for 4:15. 
• [3:30-3:50] Go to first floor. Wait to get EKG. 
• [3:50-4:10] Drive to other building. Wait to get bloodwork. 
• [4:15-4:30] Rush back to cardio-thoracic; have appointment with assistant. 
• [4:30-4:50] Have appointment with nurse. The assistant forgot something. Wait for assistant.
• [5:00-5:45] Rush to appointment at AAA to do title transfer with old Lexus owner. 
• [5:45-7:00] Drive old Lexus owner home. Then drive back home. 
• [7:00-7:40] Have Liz drive me to AAA.  Drive motorcycle home. 
• [7:40-8:30] Sushi with Liz! 
• [8:30-9:40] Emails and blog. 

So many things!!! Well, at least I have a nice Lexus and a full belly. Now to study for that final... Ugh... 

The funny thing was that I expected the appointment to be like 30 minutes. I totally ditched work today without trying! 

Status Update:

My biopsy is scheduled for Friday! Woot! I was worried they might have me waiting for weeks. Of course, that was the time I asked for my finals with the professor... time for another email. Biopsy comes first. 

I've got to also head down to the hospital at the break of dawn tomorrow to get a "type and screen." Despite the fact that I just got my blood drawn. Apparently, there is an impenetrable barrier between the internet at the clinic and the internet where I'll have the surgery. Phone lines and carrier pigeons down as well. I need to go there and do it myself. 

It'll either be a simple mediastinoscopy (i.e., camera plus tool down throat) or something called "video-assisted thoracic surgery" (i.e., camera incision + forceps incision in chest), which will require an overnight hospital stay. After a small recovery time, Dr. Austin prescribes family and beers to facilitate recovery. If you insist, doctor! 

I've also got to reschedule my final for a SECOND time. I think I'm starting to stretch my professor's patience here... 

The Tentative Plan:

• If sarcoidosis, then sweet! It could be as simple as taking a few pills here and there and monitoring. So fingers crossed. 
• If results are "inconclusive," then it's probably get a different type of biopsy or wait and see. I have no idea. 
• If lymphoma, then we're thinking the following: 
• See my old oncologist at Stanford and get her opinion. Possibly make my old oncologist my primary oncologist again. 
• Possibly fly to New York with Liz and see if we can get an appointment with some of the world experts on relapsed refractory Hodgkin's Lymphoma. Hodgkin's is rare as it is, and since it's so curable, a relapse is very rare. So there's not many experts in that field, I think. 
• I've been lined up for a promising clinical trial at Stanford. It involves a type of chemo that targets cells in a special way (Brentuximab and something else). This seems to be a good next option. 

[6-09-2015] Results are In (Day +????)

Good News!

While studying for my final tomorrow, I found an AWESOME looking 1996 Lexus ES 300. I've been hunting for one of these beautiful vehicles for months now, but they're so hard to find in good condition.

After about 4 months of looking, I bought it!

What a beauty! Finally, I can drive in the rain without worrying about my old beat-up Ford Escort breaking down.

Bad News!

After I bought my car, I ran to make it just in time for my oncology appointment. At this point, I managed to somehow convince myself that everything would be fine and that all my "symptoms" were in my head. It looks like that isn't the case.

The scan results show no activity for my old tumor, but 6 or 7 lymph nodes behind the tumor are lit. They're not too big, and they're behind the heart in a somewhat symmetrical arrangement. This could be a good thing.

My doctor tells me there are two possibilities:
1. Sarcoidosis
2. Cancer (Hodgkin's relapse or maybe even non-Hodgkins)

If the former, then that's a good thing and the prognosis is very good. I haven't even had time to research what Sarcoidosis is in the first place, but I know it's what we're hoping for.

If the latter, then that's the bad news, obviously. But maybe this is the less likely option. I mean, I've been cancer free for 2028 days! That's around six years! I believe after 5, you're technically cured. So could that mean cancer is the less likely option here?

Next steps are to get a full chest biopsy, which is a significant surgery. They can't do the simple "fine needle" thing because the Hodge cells might not fit in the needle or something. I had one of these before, and it's a huge scar! Maybe they can go over the old scar :P .

Then, if it's cancer, it looks like we'll do some special combination of Brentuximab and something else at Stanford. At least, that's the tentative plan. I still need to do more research. Speaking of which, I've got to study for the FINAL! Omg, I've hardly studied at all for the darn thing! Time to get started!
  

Update: 3 hours later and still not studying

Though I should be studying, I'm finding it hard to care at the moment. I did, however, manage to get the results of the CT scan. Here's the summary at the end:

FDG avid bilateral hilar and mediastinal adenopathy, new from comparison
and is distinct from the patient's treated anterior mediastinal mass. Relapsed
Hodgkin's disease most likely but the sarcoidosis would be a consideration based
on the pattern of adenopathy.

I'm rooting for sarcoidosis. Go underdog!

[6-08-2015] Bekah Furey (Day +2027)

Bekah passed today due to complications with her allo-transplant. She was a source of inspiration and hope for me during my stem-cell transplant. I tried to get in contact a few weeks ago, but it looks like I was a few weeks too late.

I've saving this post in "draft" mode, since I've been having difficulty finding the right words. But I don't think I'll ever find them: maybe words just aren't enough. Maybe that's part of the point of this post.

You will be missed, Bekah. Thanks for everything.

[6-06-2015] Dermographia and Night Sweating (Day +2025)

I'm concerned

For the past two nights, I've noticed sweating at night. Not enough to drench the bed or anything, but enough to cause a slight chill once you return to bed. Damp, but not so bad as to make it difficult to get back to sleep. I think is a bit beyond the bias I was talking about earlier, because I feel I would've noticed this before...

To recap, here's a checklist, from most concerning to least:

1. Dermographia (i.e., skin writing). 
2. Itching, all over. 
3. Night sweating
4. Fatigue?
5. Mid-Day Temp: 99.3F

Dermographia

Normally, I'd put the itching as #1, but because the dermographia takes the cake for three reasons:

1. It seems to be getting worse over time. 
2. I encountered both dermographia and itching prior to my diagnosis, so it's alarming to see encounter both at the same time yet again. 
3. It's also more prominent as it gets close to the tumor location (hopefully dormant)

I can now draw all over my arms, chest, and neck. It's kind of neat, in a way. As I'm brushing my teeth or something, I can pass the time by drawing designs on my skin.

Alternative Explanations

But now that I think about it, perhaps the dermographia is a good thing! From what I can tell, Dermographia is not a known symptom of Hodgkin's Lymphoma. I'm finding very little correlating the two, so it must be uncommon. So much so, that I'm either I'm a freak of nature (I admit the possibility) or the dermographia is a symptom of something else! If that's the case, then what could be causing the skin writing could also be causing all/most of the other symptoms.

So one very real possibility is that I'm simply allergic to something! I'm going to try to change my eating habits a bit and see if that helps. Maybe also switch shampoos/soaps again. Fingers crossed!

[6-05-2014] The boy who cried wolf. (Day +2024)

I just found the most amazing thing. There's this film by Nanni Moretti called Caro Diaro. In the third act of the film called "Medici," his struggles with pre-diagnosis Hodgkin's Lymphoma nearly mirror my own. It's uncanny!

Like Moretti, I eventually got fed up with itching on a daily basis and sought help from various doctors. One doctor prescribed skin cream, another prescribed a pill, another thought it was stress (i.e., all in my head), another recommended a special kind of shampoo, and another thought it was environment (e.g., hard water).

You can find the third part on Youtube at https://www.youtube.com/watch?v=tMV22-yIFCo.

The funny thing about the movie is that it made me feel immeasurably better. I think that, despite what I may think, my main objective isn't to scour the internet looking for new information about Hodgkin's. Instead, I think what I'm really looking for is someone or something to identify with, and identifying with Moretti for a bit was exactly what I needed.

Maybe it's like story about the boy who cried wolf, except that the first time this boy cried wolf, there actually was a wolf. The villagers know all about that crazy boy (now an old man) who once cried wolf a while back, but the town trusted this particular boy so they ran up the mountain anyways. To their surprise, they see the massive dire wolf and somehow manage to capture it before it devours all their sheep. It was the first time the village saw a about 50 years, and this time, their sheep remained intact! So a big celebration occurs in the boy's honor! 

After a few more years pass, the boy cries "wolf!" a second time and no one responds. They ignore him because statistically speaking, it's very unlikely that there are two dire wolves running around these woods. After all, they are very rare creatures! So no one shows up, and the boy sits there pretty certain he hears the same wolf sniffing around in the sheep pen. 

Regardless of whether the boy was correct the second time, he feels more and more different and isolated from the town folk. So instead of attempting to re-connect with the town, he goes off into the woods to find the original "old man who cried wolf" and hear his story and maybe make a friend. Maybe there was more to that story than the village had let on...  

But I digress...

I just had my scan today. I went ahead and took the day off of work because you're not supposed to be around people when you're radioactive. So that was a plus, it gives me more time to not do my school work, which was due yesterday.

In a few days, I'll find out whether there's actually is a wolf running around. It's kind of hard to study when a wolf may or may not be right behind you, but you're somehow prevented from turning around. Hard to do anything really, except perhaps to write about the wolf a bit :)

[6-02-2014] Obsirmational Bias (Day +2021)

Wikipedia tells me that observational bias occurs

...when researchers only look where they think they will find positive results, or where it is easy to record observations

and then you have confirmation bias, where

...observations are biased toward confirming the observer's conscious and unconscious expectations and view of the world; we "see what we expect to see".

As far as I can tell, what I'm going through seems like a combination of the two. Mix the two and add some Heisenberg to the mix, and you have what I call obsirmational bias, where

...you're objectively searching for new evidence to either prove or disprove your hypothesis, but each new area you look can only yield evidence to support your hypothesis. In addition, the act of searching for new evidence can actually create evidence where there was none before. 

I think you can see where I'm going with this. Worrying about a relapse is positively riddled with obsirmational bias. Here are a ton of examples:

• Once I started worrying about a relapse, I started taking my temperature more frequently. In doing so, I discovered that I frequently have a temp of around 99.6 in the middle of the day. For all I know, this could be status quo, but since I'm not measuring more frequently, this feels like more evidence to support a relapse. 
• I also started paying more attention to my scalp and skin. Try the following experiment: look at your arm, and ask yourself if your arm it itching. Think hard about it. Does it itch? What about when you think about it 20 times a day? Might you then scratch it a bit? Oh, and don't forget that scratching your skin can cause you to itch where you hadn't before! In this way, you're causing this problem by thinking about it, and reinforcing it by acting on it, causing you to loop in a downward spiral of itchiness. Unfortunately, I don't think this is what is happening here, but I think you see my point. 
• I also started probing my chest a bunch to see if I could feel the tumor. For example, if I sneeze or cough with my hand on my chest, I could feel the tumor again! OMGC! Of course, I don't routinely sneeze or cough like this, so this could also be status quo for all I know. Oh, and get this: the next day my tumor location was sore! OMFGC! Or wait, did I cause the location to be tender because I was coughing/prodding/poking it all day?  
• I also started scratching to see if I had demographia again. You know what happens to skin when you scratch it? It turns RED, dummy! (Of course, if the skin was raised, that'd be a different story).  

And on and on. Believe it or not, there are even more examples, but I'll spare you all. My point is that I can't trust myself right now. I see symptoms everywhere, and I've got to stop digging. It's not productive.

Ok, one last example. I started going through my medical records and I found an interesting discovery. Just before my BMT, I had a scan that mentioned

a small, borderline, mildly hypermetabolic left neck lymph node measuring 6mm, of unclear significance.

A later scan said that it was "suggestive of a minimal disease state" and that I also had

enlarged paratracheal lymph nodes [with] hypermetabolic tissue extending to the right paratracheal and precarinal regions. 

Hey, wait a second. Maybe that's why I experience the most dermographia on the left side of my neck! Wham! Obsirmational bias strikes again. They need to hurry up and get my CT scan scheduled.

[5-15-2014] Worried (Day +2003)

The most annoying part about having Hodgkin's was the itchy scalp. For years, I had scratched my head until the scratching itself became a problem and I had to seek treatment for it.

• At first I thought I had lice, so I surreptitiously went to the local drug store and sheepishly bought a lice kit. When that failed, I believe I let the cat out of the bag and asked Barbara to check my head for the little critters. Nada.
• Next came the shampoos, if I recall correctly. I thought my condition might require some sort of fancy "therapeutic" shampoo or something. After all the OTC shampoos failed, I finally sought the help of a dermatologist. After that failed, the dermatologist attributed my itch to stress and recommended I look into ways to mitigate that (e.g., meditation). This didn't quite add up because, at the time, I wasn't really all that stressed about anything.
• At around this time, my skin began to itch as well. This caused me to come up with the "hard water" theory. Perhaps I was allergic to hard water or something. I looked into water softening, but that seemed like too much work, so I just paid attention to how I felt after I showered away from home. The same darn itchiness persisted!
• Then I found Benadryl. This worked perfectly, but left me in a semi-groggy state that wasn't really sustainable. Funny, I just now remember complaining to my sister about this as we were out clothes shopping or something. I said something like, "It works great, but it leaves me so darn sleepy!" At that point, I pretty much chalked it all up to allergies or something, and sought to just learn to deal with my overall itchiness.

Naturally, having an itchy scalp all the time isn't pleasant. You can scratch a little bit, but after a while, your head starts to get a bit sore. You've got to train yourself to stop scratching so you don't make things worse. This was quite difficult, as scratching comes naturally to me (e.g., while pondering something). Nevertheless, I trained myself to stop. When I found myself reaching up to scratch my head, I'd stop my self and pet my head instead, as one would pet a favored cat. It actually helped a bit to soothe my sore scalp. If that didn't work, I'd pour some water on my head, which always helped for a while.

This is why I'm worried. A few days ago, for the first time since I had Hodgkin's, I caught myself petting my head to soothe my poor over-scratched scalp. Over the years, I've learned to not panic whenever I itch because it was always transitory. It's never been like this, though.

I talked to my GP about the above, and she's not too concerned. Though she didn't really allow me to go into any detail about any of the above. She was concerned enough to recommend I monitor my temperature, get blood work, and to see a hematologist.

So I went home and took my temperature. It was 99.3. Naturally, I start listing my symptoms:

1. Itchy skin/scalp 
2. Tired after work. I mean, who isn't? But I have been feeling more tired lately, taking naps and stuff. 
3. Intermittent and very mild dermatographic urticaria. An interesting phenomena where you can write on your skin. For me, it usually is more apparent after drinking (done with that!), but I don't really worry about it because it so mild (i.e., Them: "Dude, when you scratch your skin, of course it's going to leave a mark." Me: "But it's more so than usual!" Them: "Uh-huh") 
4. Mild fever 

No night sweats though. Still, I'm officially worried. It's time to revisit my blog.

Now what?

"Austin's personality causes him to moderate feelings of happiness, so that he does not feel like he is making the mistake of assuming that things will remain good forever. This is not pessimism, but rather a desire to have his emotional state be rational and acceptable to his intellect."

A quote from one of Barbara's comments. It perplexes me that I cannot deny or verify this... it has the scent of truth, though. Is my level of self-awareness sub-par, or are there insights that aren't so readily available from the inside looking out. I think maybe neither: Barbara just knows me pretty damn well.


Anyways... I'm doing well; getting back into the swing of school. It's funny how school is like a trampoline wall -- the harder you push, the harder it pushes back. Sure, I can make it through school with an easy push... but I *want* to work hard right now... I *need* to... and school, it's pushing back.

But that is what is so great about school. You can *never* do enough studying, so there's always something to do. It's not like a movie or video game -- when it ends, you say to yourself: "Now what?" With learning, it just doesn't end.

I've pretty much forgotten the whole cancer thing. All it means, at this moment, is getting up at a dreadfully early hour and getting zapped for a few minutes. 8 more to go and I'm done.

I get the feeling that this sort of victory is anticlimactic. Funny, that.

As for my memories. Everything was relatively easy, except for the BMT.
The BMT is something I just want to forget forever -- except for those beautiful moments that make me feel love. I remember Barbara playing Chopin on her laptop... talking with Liz via my computer... watching her knit... watching Barbara knit... and, of course, many moments with my Mom. But most especially when she wheeled me outside, late at night, when I was low. Those moments make me smile. They also make me feel guilty for not expressing my love enough... for not excessively iterating my appreciation, gratitude, and love.

But, with the good comes the bad. I try to forget, but whenever I think about it in detail, I end up in an emotional funk for the rest of the evening. Thank god I have a few beers in the fridge and an episodes of House and 24 coming up.

[1-20-09] Day One

[6:21pm]
     The results are in: my scans are clean. Well, as clean as we can detect, anyway. My doctor tells me that "The fire is out, but we can't be sure that there aren't any hot embers just waiting for a gust of wind to flare up. That's what the radiation is for... those embers that might be lurking."

     But, as of now, I've done all that is required in hopes of a cure. My doctor tells me that if a relapse occurs at any point, then the strategy is no longer curative. The options become more scarce.
     But right now, I am in remission. My doctor tells me that, if I stay in remission for 5 years, he will pronounce me statistically cured. Basically, I have 1779 days left until I am free from the threat. The other milestone along the way is after two years of remission -- most Hodgkin's that do relapse, do so in that period. Today is day one.

     It's also the first day of school for me. It's hard for me to return... again. All those emotions and ambitions returning... Time to succeed.

     I also saw the radiation oncologist a few days ago. I have the "set up" scan scheduled in a few days. Then daily radiation for four weeks. It will probably start about a month from now.

     Funny how "Day One" is 9 days short of my cancer discovery. 1779 to go.

     As of now, my blog is scheduled to be updated "whenever I have something to talk about."

     Philosopher of the day: Epicurus (He's not what you think).

[12-31-08] Return

[1:02pm]
     Ah, yes. Michigan was good!

     The trip there was quite an ordeal: Two flights delayed 3 hours each made for a travel time of about 12 hours. I was in the middle of a crowded airport, waiting for a flight, with sick people among us -- I smile to think what the nurses/doctors in Stanford would say to that.
     Basically, I expected to get sick during some point of this trip... cold weather, snow, airplane travel, travel strain. But I didn't (other than a few sniffles)!

     And I got to meet Liz's family for the first time! Great people -- I really felt welcome and enjoyed their company. Plus, Liz's mom really put together an amazing amount of excellent food! Real Christmas dinners! I'm not used to the whole sha-bang.

     It wasn't as nearly as cold as I thought it would be, but there was snow. A white Christmas, indeed. But, it's good to be back. Time to unwind.

     I also had an appointment with my local oncologist today -- nothing new, or anything -- just scheduling a Pet-CT scan and referral to my radiation oncologist. Nice to not have to waste a whole day for a 20 minute appointment.

[12-29-08] Return

I just got back from a very long trip from Michigan a few minutes ago.

Dead tired. Will post all about it tomorrow.

[12-22-08] Christmas

[3:48pm]
     I saw my family on Saturday... it was nice. I kinda surprised myself: I wasn't nervous in the slightest. I've gotten so entirely used to my bald head, my diagnosis, prognosis, and all that... that I'm totally comfortable with it, even if others are not.
     Regardless, everyone was real friendly and it was nice to see familiar faces.

     Now, in just a few days, I get to see some new faces in Michigan! I'm totally looking forward to it! My greatest fear is the cold -- I'm such a California wimp when it comes to cold weather. In fact, before the BMT I know I was more resistant to the cold. Or am I paranoid?
     It just seems that everything changes after the BMT... mentally and physically. No wonder they call it being re-born.

     Happy Holidays!

[12-15-08] Appointment

[9:28pm]
     I've learned to dread my Stanford appointments... not because of anything medical, but because of the tremendous amount of time wasted. Today, surprisingly, wasn't too bad -- only a couple of hours of waiting. Still, I think about a recent house episode: A random character freaks out and smacks the table because, "I've been waiting for over an hour."
     Pfft. That's nothing :P

     My true nemesis was the rain. At the last minute, I discover that it is going to rain on Monday. I had no choice, and there was too little time to figure out some sort of other means of transportation... so I had to drive the motorcycle to Stanford.
     Not fun at all. The cool part was that I bought some really heavy duty construction rainproof gear in preparation for the trip. So I didn't get too wet. And, entering the clinic with the Darth Vader mask and a bright yellow jumpsuit got some odd looks.

     OK, onto the important stuff. The CT scan I received on Friday was completely clear; there was no sign of fungal infection in the lungs. So that's good. And the really good news is that I should only need one more bone marrow biopsy! And it can be from 6 to 12 months from now! Of course, why was I incorrectly told that I needed a barrage of biopsies in the first place? These medical professionals should use words like "I believe..." or "Typically..." instead of "You will have..." when there is uncertainty or just plain guesswork.
     I digress.

     Other than that, I should start to see my local oncologist and have a Pet-CT in three weeks or so. And that's about it!
     Hmm... Why couldn't this appointment have been skipped entirely, and the news been delivered on the phone? Oh well, I'm just glad the Stanford phase is officially over (though I have a few remaining appointments, for some reason).

[12-08-08] Format C:

[3:09pm]
     I just cleaned my room and fully set-up my workspace. In other words, as of now, I am fully moved in. It always takes longer the first time... a lot of asking "where should I put this?" The next time, everything has its place and the cleaning goes a lot quicker. So I think it's a milestone of sorts... and I've been putting it off since I moved in.

     Also, in the digital realm, I formatted my computer's system drive today. After a year or so, my computer gets quite... disorganized. I find that wiping the system drive and reinstalling the applications I use is the quickest way to get re-organized.
     And I want to get organized. I want to get to work! I want to produce! The first step... is creating a clean workspace. Another milestone of sorts.

     This all is a manifestation of my desire to return to the real world. Time to go from escapist gamer to student (more casual gamer). Time to get ready for college, graduation, and apply myself for success in the real world... again. Time to put cancer in the background.

     Of course, there are times where the cancer/treatment is unavoidably in the foreground... like when my radiation treatments start in a few months. But, until then, I am allowed certain some freedom in not having an appointment every other day. So, I think I'll use this downtime as an opportunity to give my mind a break and spend less time thinking about the cancer.
     It's a change of mental posture. Time for a relaxed stance.

     This includes my blog, of course. I'm not really thinking about it as much, and I certainly don't want to try to think about the cancer... that's like dwelling on it. So, I'll just say less... that is, unless there is an event/appointment or something that gives me something to talk about.

     Accordingly, I'm going to reduce my posts to every Monday until my radiation treatments start. Of course, I'll also post as soon as I can if there's any news or events.

     That being said... see ya next week for my (supposedly) last Stanford appointment!

[12-05-08] Michigan

[7:26pm]
     During the many hours of wait on the day of my Monday appointment, I had a lot of time to talk with my grandmother. I recall her asking on various subjects: "Are you allowed to ...," or "Can you ...," or "Will you be able to ..."
     I remember defiantly answering "yes" to all of those questions. At first, she would give me a perplexed look and I would have to clarify: "Yes I can do that, but the doctors say that it is not allowed." And again, "Certainly, but it is not recommended."
     Soon, she was rephrasing all of her questions. No longer was my freedom in question... instead, it was my choices or the doctor's recommendations that was in question. It was a good feeling.
     Even if you're not being defiant, just changing your perspective can mean a world of difference. Say you technically have fourteen days remaining before you are supposed to go outside without your mask. There's a world of difference between "I can't go outside without my mask" and "I have chosen not to go outside without my mask." The latter implies freedom.
     If you still have your freedom, then that's one less thing the cancer has taken away.

     As you may recall, I was told not to fly to Michigan for Christmas holiday. I wasn't given a recommendation, I was told not to fly. Well, I want to go. In addition, I don't think it's a stupid decision. If I do get sick, I'm sure I'll pull through fine... it may just be a bit more prolonged and annoying that others may experience. Flying may slightly increase risk of medical trouble, but isn't that life? And I feel like living! Whether that be from living like a normal human or by taking chances...
     "Get busy living, or get busy dying."



     On a side note, I had a Snickers today... it was the first food post-BMT that tasted 100% as good as I remember it! Woohoo!

[12-01-08] Stanford Appointment

[10:37pm]
     Today was my appointment... it was exhausting. I left my house at 10:30am and returned at 7:30pm for a 20 minute appointment with my doctor. Transit time was 2.5 hours (one way), labwork had an hour wait, and the clinic appointment had an 80 minute wait. A whole day wasted; I'm so tired of this stuff. It will be much better once I have my own transportation, of course.
     Then I have two more appointments scheduled two weeks from now. So I have freedom for 12 of the next 14 days... the price paid for two 20 minute appointments. Bah. But enough complaining...

     I did get to learn a few things. Top on my list was the bone marrow biopsy. Apparently, the biopsy is to determine whether I had any chromosome damage/toxicity due to the high dose chemo. This sort of damage could be classified as pre-cancerous. So, unfortunately, it looks like it is justified. My doctor plans for two more biopsies (coupled with pet-CT scans): one about a month from now, and another in 4 months. Fortunately, it doesn't look like the bone marrow biopsies will be a part of the routine in the years to come.
     I then asked about transferring my care to my local oncologist. I explained how routine transportation to and from Stanford would make school in Berkeley quite difficult. My doctor ignored the initial question and instead explained how she felt that it was too early (by about 3 months) to return to school. I then firmly explained that "for the sake of my happiness, I need to return to school... soon." Surprisingly, she just nodded and then made sure I was taking a reduced courseload. As for transferring my care locally, she said that should begin at our next appointment, two weeks from now.
     She also scheduled another CT scan before my next appointment. It has nothing to do with cancer -- there was a subtle "Nodular Grand-Glass Opacity" seen on my last CT scan taken while I was hospitalized. It usually indicates a fungal lung infection of some kind, that I obtained due to my severely impaired immune system. From what I gather, it is typically of little concern at this stage, and it usually fixes itself when confronted with a stronger immune system... it is only a problem when it gets out of hand. But, as my scans indicate, it is very subtle.

     I then asked: "In your opinion, is the cancer gone?" Her response was something like, "Right now, yes, I believe it is." I didn't like that response... something in the way she said "right now" seemed to stress the possibility of a relapse. Or perhaps she was just trying indicate that further intervention, such as radiation, would be necessary. Or maybe, by "right now", she meant "with the information I currently possess, I believe..." She could be trying to indicate that the results from the bone marrow biopsy or pet-CT scan would change her opinion. Regardless... that is what I am left with.

     We also talked briefly about the mask: I am now officially allowed to take it off in most situations. I only have to wear it around sick people, dusty outside areas, or in hospitals.
     Also, radiation was briefly mentioned. It does look like that it will be able to be handled by my local radiation oncologist. Woo-hoo! She said we will talk about it further at my next appointment.
     Lastly, I asked about plane travel to Michigan. I had an invitation to visit Liz's family and wanted to see what my doctor thought. When I told her the date, she adamantly opposed the idea. "Maybe if it were two months later than it is," she said. Oh well. Heh... the thought of wearing that huge scary mask on the plane... they'd probably think I was a terrorist with a gas bomb or something.
     That's it for the appointment!


     On my way home, I was actually feeling quite down. I'm not exactly sure why... maybe it was from something my doctor said, or from exhaustion from the day of traveling, or perhaps from cancer stealing yet another day of my life. Accordingly, I stopped by 7-11 to buy my ultimate comfort food: nachos.
I've bought these particular nachos countless times in the past, and today... they didn't taste very good. Just another brick in the wall.
     I'm just so tired of all this stuff. At first it seemed like I had a limitless capacity to battle cancer -- an infinite endurance. I think perhaps I have less than I thought. Those cancer warriors out there... the people that fight this stuff for years and years... how do they do it?
     Maybe it's just post BMT stress/anxiety/depression/trauma whatever. It's probably temporary. But it feels like something has taken it's toll.

     Barbara mentioned that she didn't agree with my "head in the sand" strategy. Of course! It's a totally stupid proposition! It's not a strategy at all! But, you know, those few moments in the sand are quite peaceful...

[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.