[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.