Friday, October 28, 2011

Sorry for the delay

I've been so engaged with trying to re-engage, that I wasn't paying much attention to the blog. Basically at this point, things seem to be finally (but slowly) moving in the right direction. The swelling seems to be stable if not shrinking. I haven't had another fever. And I've been forcing myself to exercise to keep myself from going even crazier than y'all expect. In general, if you don't see frequent posts here on the blog, it usually means things are going in the right direction.

Thanks again to all of you who have pulled me through all of this with huge support and kind words!

Monday, October 24, 2011

Deja vu?

Or maybe a circular path cycling past the same things over and over?

This morning I met with Dr. Berger, as I did 2 weeks ago exactly. Just like 2 weeks ago, my inflammation was definitely reduced, but not perfect. Just like two weeks ago, I was told by Dr. Berger that it looks great and that I'm allowed to do whatever I want (with the exception of several "details"), but that I should continue to compress the inflammation whenever possible or reasonable. And just like two weeks ago, I left with my head wrapped in an ace bandage.

Unlike two weeks ago, this morning I did not feel sick or wiped out. Let's hope it's not deja vu or an infinite loop, but instead an upward path of a parabola that hit its minimum a couple weekends ago.

Saturday, October 22, 2011

So I'm not crazy!

Ok, ok, but not for this reason. I was getting worried because it seemed like every evening I was getting close to having a fever again. This time I decided it was time for a little research. After checking it out, I discovered that (a) the range of temperature is relatively broad, and 99.6 or so is actually ok (you also gotta take into account the accuracy of the particular thermometer I have), and (b) your temperature peaks in the evening!

Here's a plot that is a little tough to read, but it does make the point. It's the 2nd plot down with the axis on the right.  Phew!

Did it turn out that I was actually right?

First off, with every statement about conditions I make, I expect everyone out there to knock on wood.

I have been home since Thursday evening, and I still haven't shown any fever. The inflammation is definitely not increasing and in fact might be reducing even further. My energy is increasing.

Was my original theory correct? Here is even more potential evidence:
  1. The fever didn't start until 3 weeks after the surgery. If the surgery got infected, shouldn't it have shown its ugly head a little earlier?
  2. The inflammation didn't happen until many days after the initial fever. If the inflammation was caused by infection, shouldn't it come before the fever?
  3. If the inflammation were infected at all, isn't it more likely it would show up within the first 3 days since the assumption was it was caused by the infection?
  4. Couldn't the inflammation be caused by the either the high temperature fevers I had or by the fact that during that time I was lying down all day every day?
Of course, I'm not sure I'll convince my docs about it, and I still might not be making medical sense, but to me it seems the simplest logic. The flu kicks in, forces me to lie down and also heats up my body, and then the inflammation returns after almost being completely gone.

I meet with Dr. Berger on Monday to find out more and also will likely end up back on the chemo, so we'll see how much influence that will have.

Thursday, October 20, 2011

Latest Update

Well today was interesting. This morning (um...yes, first thing) I spoke to a doctor who probably mentioned what was going on, but it wasn't clear what the path was going to be. He said at some point today the whole group would come in to talk with me about it.

Then later in the day BOTH doctors from the Infection Disease group came and saw me, and heard me complain about how little I know and where things might be going. They handled it very well. The next thing they wanted was another MRI to see if there was a sack trapped inside that had some infection which was leading to the fever. I hadn't yet had anyone actually talk with me about when an MRI might be, but I figured if it's not scheduled soon, I'm in for the weekend....

Then there was an earthquake.

Then at some point, one of my great nurses (there were three of them - I can recognize them but can't remember their names) came in to tell me some information: a) They want an MRI sometime "today"; b) I have been taken off the antibiotics; and c) She will find out (and help pressure them) to nail down a time so that if it all looks good I can get out tonight!

Around 5:30 I went in for the MRI, and soon after returning (and eating some sushi with Frodo), I found out the MRI looked great and if I wanted I could leave tonight, or tomorrow. Tonight or tomorrow?!? I want outta here right now! So my wonderful freighbor who's been helping a lot with everything is out here now ready to take me back to my place.

However, their is a slight kink. I have a really good friend who is now an Infective Disease doctor out in Boston, and he's still a little concerned (from my description) that it still might be infected. He named two particular infections that take 5-7 days to form. He actually knows one of the two doctors in the ID dept. here, and so he's gonna "heckle" her to find out what they thought about those. All said, he did agree that going home and keeping an eye on it would be fine. Hopefully they keep watching the culture and that they set it up the right way to test it for these other possible bacteria.

Wednesday, October 19, 2011

"You are a mystery" - Several UCSF doctors

Here's the latest update. At this point the culture shows no infection. So they are going to check it out one more time tomorrow, and if it still shows nothing they will conclude that it is not infected. However, I've also been told that since I had a fever last night, I cannot have another fever within 24 hours. If I do, I'll be sticking around even longer. So far so good.

As far as the swelling goes, well, unfortunately it's growing again. I was given some potential reasons and lots of ways to approach it. The fluid build up is likely a small hole in the durum that makes it easy for the fluid to leak out from pressure but not get pressed back in. The treatments vary incredibly, and some of them are even a little depressing, so I won't go into that too much at this point, since we still haven't heard specifically from Dr. Berger, who is out of town. I have spoken a lot with Marlene the NP in that department, and she's been great.

All that said, it now seems that the infection theory does not take over. It is still possible that my original theory is correct, with the fever leading to inflammation, although they could also be completely unrelated.

Tuesday, October 18, 2011


Well folks, I did get to meet with Dr. Berger yesterday, and he was pretty concerned with the swollen pocket. He drained it all out, sent it off to be cultured, and then sent me into the hospital. I'll be here for at least two days, possibly more. Today I actually spoke to one of the doctors from Berger's team, and he told me that so far they haven't seen any obvious infection from the fluid. I'm a complicated patient apparently. They still stumped as to whether I had an infection at all or what else it might have been. By tomorrow at 3 or so they'll have the final information about the fluid. In the meantime I'm apparently a research project yet again.And no time reserved for shavasana....

Monday, October 17, 2011

Correlation vs. Causality

Am I failing as a "scientist"? I had looked at the correlating evidence, and drew a conclusion that might be entirely wrong. Fever. Achiness. Loss in appetite. Must be flu. Increased pressure in the sack by the surgical area must be due to the high fever. Take Tylenol, reduce fever, feel better. The pressure of the swelling definitely seems to be correlated with the temperature of the fever. Sounds like a good theory.

Until I spoke with Dr. B last night. He's much more concerned with the swelling in the surgical area, and thinks that could be infected, causing the high fevers. When he first mentioned it, it made no sense. Then I let the remainder of my brain think a little bit. Flu? With no coughing? No stuffy nose? And after Tylenol I feel totally fine? Rut roh.

So I'm headed back today to talk to Berger's nurse assistant, and if she tells me he's out and I have to wait until he's around, I'm headed to the ER. A swelling near the brain is not a good thing...even if it is caused by the flu.

Saturday, October 15, 2011

Yes, I'm over this

Well, I haven't recovered yet, so as you can imagine, I didn't get to make it to the Ride for the Roses to meet Lance. My only saving grace was that I could sit on my couch and watch Michigan beat Michigan State. That didn't work out so well either....

Yesterday I tried to "sweat it out" for awhile. I was carefully monitoring the temperature, and by the time it hit 102, I decided to take the Tylenol. I sacked out early and ended up not taking my chemo (which I'd normally been taking right before bed). I also forgot to put the headband on. I slept a lot better, but not perfectly. When I woke up, I didn't feel wonderful and noticed that my swelling by the surgery had become extremely pressured. First thought was that it might be because I wasn't wearing the headband while laying down to sleep, causing fluid to collect (this I've been told).

I went to take the chemo, and, well, that didn't go so well. As Calvin once said "What goes in, must come out!" So I got in touch with Dr. B and he said I should take a short break to get over this flu. Then I took the Tylenol, and suddenly, after sweating profusely, I started feeling great! As if it were all done! I also noticed that the swollen area by the surgery had loosened up again. After the game, I took a nap, intentionally keeping my headband on and sitting as vertical as possible so the area wouldn't swell again. But after a short time I started to feel chilled. I checked the temperature and it was over 100, and I checked the surgery area and it was swollen again.

So I've been working on a theory. First off, it seems like the fever itself expands the fluid in the surgical area, possibly by generating pressure from the heat? Or perhaps drawing more fluid in there? So I'm still testing that now since I just took Tylenol and am sitting exactly how I was sleeping. Will it get better? Stay tuned! I'm also trying to figure out if taking Tylenol to feel better impairs my immune system from stopping the flu thus extending the total length of cruddiness. I've heard both arguments, but am curious what you all think. I've already tried both!

Tuesday, October 11, 2011

Timing is everything?!?

Sorry for the delayed update, but I've been recently dealing with some kind of illness. I'm really hoping it's not related to or caused by the chemo, but instead is a simple cold or flu. Not that I'd know, since I haven't been sick in over 5 years and have no idea what to expect (yeah, yeah, I know I'm not counting "cancer" or "drinking too much").

I did meet with Dr. Berger on Monday, and he gave me permission to exercise after checking out the blob of fluid from the surgery. I also asked him about the two "spots" on the MRI, and he had no idea what I was talking about, but was pretty sure if he'd seen something, he would've removed it. I hope I didn't get Dr. B in trouble...though now I'm even more curious - who initially brought it up?

Other than that, I'm just trying to get past whatever this is that keeps rearing its ugly head (insert self-deprecating humor here) so I can still make it to the Ride for the Roses with my buddy Lance! Alas, sometimes timing is everything.

Saturday, October 8, 2011

Thanks "Big Sis"!

Here is an article explaining that choroid plexus changes are not uncommon after surgery on the temporal lobe. Sent to me by my big sister!

Also, I did see 50-50 last night, and it was amazing! An amazing movie with some amazingly supportive friends. Definitely recommended. (And yes, I am willing to see it again).

Friday, October 7, 2011

Where things stand

Here are a couple of simplified images from my pre- and post-surgery MRIs. The first picture shows the tumor (red arrow), and also these two white spots that I've been told are likely nothing more than "choroid plexus enhancing in the ventricle" (green arrow). The second picture shows where things were removed and how the white spots are still showing up. They have apparently been there all along, but I think after surgery they expected them not to show up in the contrast image. It could also be a result of radiation. All that said, we need to keep an eye on it, as it could be more tumor (and yes, I will be asking the surgeon why it wasn't taken out in the last surgery). You can also see in the second image the extra "stuff" he took out that wasn't pulling in contrast agent.

Monday, October 3, 2011

Yes, the staples are out

My hope was that once the staples were out, I could start taking steps towards my "normal" life. Unfortunately there was still a lot of swelling, and that's what limits my physical conditioning. Too much heart rate increases the swelling. So I was told officially "you can walk, but no more". For those who know me, you probably know that news like this was not easy to handle.

However there might be a bright side. Almost immediately it seemed like the swelling was dropping. Were the staples the cause of the swelling itself? It makes some sense if you think about where the fluid was (between the skin and the muscles surrounding the skull) and the fact that the staples could have been creating a "pool" to hold the fluid. I'm not quite ready to get excited, but stay tuned....

In other news, I restart the chemo on Wednesday, but in order to do so, I need to once again go through the entire range of baseline testing, including another MRI, an EKG, blood tests, and an eye exam.

At least the weather finally sucks!