[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...