Ugh.

Emily has been asking me to write something here for weeks now. If anyone is still following this you are no doubt likely aware that many significant things have transpired the past few weeks/months.

The EGFR/Irinotecan therapy I was trying last, which was the last "traditional" option available to me, did not do a good job at all. You could say it was a complete failure. It also had lots of side effects. I won't do that again. I don't remember when I got that news, maybe October.

I went back to looking at purely surgical interventions for things that are worryingly growing inside me and also at clinical trials. I decided to participate in a phase-I clinical trial for another fancy genetically engineered monoclonal antibody. I am told that it has shown promise in some patients in my case by providing some systemic treatment benefit. So that took a while to get sorted out but I did it for 3 infusions. They had varying levels of goodness. I was hospitalized after the first one with bad side effects, the 2nd one I was fine, and the 3rd one I wasn't doing so hot. After the 4th one I was going to be re-scanned to see how things were going. That got moved up because of all the complaining I was doing.

Turns out things were going badly. My cancer really has taken off since I've stopped the 5-FU/Irinotecan treatments. Those treatments sucked I thought from a side effect point of view and they were not stopping or retreating the cancer but it does seem clear that they were slowing things down. Unfortunately I don't think I'm willing to do them anymore - I want to try to get an oral dosing of 5-Fu (Xeloda) sorted out that I can handle.

So no more clinical trial anymore either.

In any case my insides are just riddled with metastasis. I haven't even read the whole radiologist report but I know there are several large abdominal lymph nodes (7x4cm ish), a huge tumor on my liver (10x7cm last time they looked - it keeps getting bigger), several other smaller ones on my liver, a number of small lung lesions in both lungs (none of these are causing me issues, yet). The kicker is that I also have a brain metastasis. It was really messing me up. I have neurogurgery scheduled to have as much of it physically removed as possible -- followed by brain radiation to knock it back some more.

I'm on steroids that reduced the swelling in my brain so now I don't really have any/many symptoms but it is very serious. I could die of "sudden death" if the swelling got worse or the tumor kinked off this "drain pipe" that it's near, I'm told. So I'm taking it very seriously.

My liver function is somehow miraculously still normal but the main tumor is very large. I want it gone.

I have significant issues with abdominal pain. I can control it with significant use of pain-killers, which I am not all that happy about. No one (doctor) wise really knows what exactly might be causing it - but I personally suspect some of those big lymph nodes.

Somehow I have to try to get all of these obviously egregious things under control, hopefully get a good dose of Xeloda sorted out, and just sit around and watch/scan/re-treat for the rest of my life, basically. I don't think it's going to be that long, sorry to report. If I can manage to force the tide back to where it was maybe 6 months ago surgically and then keep it somewhat at bay with more active intervention I think it actually might go well. It's just really hard trying to get it knocked back -- it's all different doctors and most of the treatments cannot be done in parallel. And of course no one is as concerned/worried/in a hurry than Emily and I.

Oh yeah, Emily and I are moving to Florida. In fact, we were planning on being gone this Wednesday. Now it's more like the end of the month. We have been in complete limbo land because of this brain tumor thing. It looks like I'm probably (well, I'm definitely) having neurosurgery here at Johns Hopkins Hospital but I will do all of the other treatment in Florida, maybe at Moffitt Cancer Center in Tampa? I don't have any relationships or appointments there yet - another thing that still has to be done.

Moving is a huge deal and this certainly hasn't made things any easier. I got another job where we're moving to, which I am excited about. It's also a little scary because it has been so long since I've felt like a "normal" "productive" person. I want to feel that way again though and this is what I'm pressing ahead with. At this stage in my life I believe what I really want is to just be back closer to all of my family. We had already made the decision to move away from Maryland and all that that really meant, which is a lot, and this whole ordeal just threw a 2x4 in the spokes. After much soul-searching though I think moving is still the best thing to do.

It's warm in Florida. It is not warm here in Maryland.