A Few Pictures

I'd say he looks great for a couple days out of brain surgery......

I also took a shot of his surgery site. Be warned - it's large and not-so-pretty. (Not bloody or gory, just Frankensteinish? Sorry Ryan! :) Incredible, really.) It's here.

Post-surgery Update, Day 3

Today was another busy day. Ryan has started to feel a little abdominal relief, and I think he was more talkative because he was feeling better. This seems to have caught up with him now that it's the end of the day though - he's pretty tired. The transport guys have just whisked him off to get a post-op head MRI, which is something he's resisted since the surgery because of the abdominal pain. We'll see how it goes.

We didn't see the flurry of doctors again, but did see a physical therapist and an occupational therapist. They were both impressed with how well Ryan is doing. He's much stronger and more mobile than they're used to seeing in this ward, I think. Dr. Diaz (his oncologist here at Hopkins) also came by, and we're working on a plan for the next steps of cancer treatment. Unfortunately, the disease is progressing faster than they'd expected, so Dr. Diaz would like to get him back on lower doses of chemotherapy as soon as possible to try to slow this down some. I think that all of this will happen in Florida - we need to make some appointments next week.

Today was also the first day that he was allowed to eat. He's been put on a liquid diet, but only wants Ensure, prune juice, and the Odwalla smoothies from the cafeteria. At least it's something!

So.. I think that's all for now. We might be home for Christmas, might not.

Post-surgery Update, Day 2

I cannot believe it's only been 2 days since Ryan's surgery. Three really, I guess, but I don't count today since I haven't yet been to the hospital. Visiting hours in the Neuro Critical Care Unit are noon-6, then 8-10pm.

I will do another update later today, but wanted to do a quick one now since the last few days have been eventful.

The original plan was to have Ryan transferred out of the NCCU after the first night. However, he still has swelling and fluid in the brain, and the doctors want to keep him under close observation. The nurses in the NCCU are amazing - the ratio of patient to nurse is 2:1, so he gets lots of their attention. I think they like having a younger, mostly lucid (if somewhat cantankerous) guy around.. his nurse yesterday was very excited to have a patient who was interested in eating. She brought him an armful of goodies to consume, but he only ate some Jell-O.

Anyway, getting back on track.

Ryan went into surgery complaining of abdominal pain and distension. When he came out, that was still his biggest complaint. The NCCU doctors know nothing about bowels, and their primary concern was for his brain. We felt like they were ignoring his abdominal issues. Wednesday was spent fighting with everyone to get the GI people to come in - an x-ray, a CT, and a bunch of angry post-midnight phone calls later.. and Thursday morning I came in to have the Customer Care rep waiting for me, and teams of doctors headed our way. The NCCU doctors still didn't care about Ryan's bowel problems, but the GI guys were great, and gave their recommendations to the NCCU team. Ryan and I feel like we're on the right track, now.

The abdominal pain and distension has at least 2 causes: 1) a very full, somewhat impacted bowel; 2) fluid in the abdomen from the tumors. They're treating #1 with lots of laxatives, stool softeners, and enemas. The GI oncologist that came by told us that he's not too worried about #2 yet because there's not much fluid there. (Of course, Ryan's not a big guy.) If most fluid accumulates, they'll be able to drain it off.

Ryan's been having a rough time, but he's doing better. I tell him about every email, phone call, and Facebook message I get inquiring about him. We really appreciate your love, prayers, and support. Thank you!

Out of surgery

Ryan had his brain surgery today. We got to Hopkins at 5:45 this morning, and they just finished closing him about an hour ago. Long day.

His surgeon seemed happy with the surgery - said he was able to get ~90% of the tumor, and that they should be able to get the rest with radiation.

I haven't seen him yet, but hopefully will soon. He's in the Neuro Critical Care Unit for tonight - if all goes smoothly he should be transferred out tomorrow, and be home by Thursday.

Thank you everyone for your thoughts and prayers. We really appreciate it.

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.

I wish I wrote more often

I wish I wrote here more often. I probably have things to say. For some reason taking the short amount of time out of my otherwise copious amounts of down time never happens.

Oh well.

Since last February when I wrote my last post I guess a few things of note have happened.

I did three months of FOLFOX+Avastin and had another PET/CT. It wasn't good. Things hadn't gotten any better. Maybe they were a little worse. So that meant that the Oxaliplatin wasn't having the desired effect. I took stock of the situation with my Oncologist and we decided that the best thing to do was to try an eGFR-inhibitor based therapy (which I am eligible for as I have wild-type KRAS). There are two candidates for colorectal cancer in general use: Erbitux and Vectibix. As far as I can tell they are nearly the same. Except you get Vectibix every two weeks instead of once a week. I'm on Vectibix now.

eGFR-inhibitor based therapies are known to cause an acne-like reaction in people. I happened to go to Florida to visit family several days after starting therapy. I ended up with what would definitely be described as "above grade 3" side effects from the medication. It was awful. Definitely not like "just having acne" again. Just a few days ago I got my second dose (I took 5 weeks off to get over the first one). We halved the dose in an attempt to keep the side effects down. So far I am not having any major issues. If I'm clear by the end of the week I guess that'll be great news.

This Tuesday I am going to see Dr. Jeff Geschwind at Johns Hopkins Interventional Radiology about surgical options to treat my liver metastasis. For people with localized metastasis or stage III colon cancer surgical techniques can be very effective for curative effects. Unfortunately I am not in that category. As far as I know the extent of my disease has been a small (~2cm) liver metastasis, a ~3cm lymph node, and maybe possibly two nodules in my lungs. Most of it seems to be pretty slow growing. Indeed, the greatest danger to my long term health in liver failure. Thus I am interested to see what the surgeons think about doing something about the liver itself. There are several interesting procedures that can be used to likely eradicate the liver mass (including some super fancy yttrium-90 "microspheres" that have to be overnight shipped from Australia or something which directly irradiate the mass from the inside).

Like I said though, I am not an "ideal" candidate for this sort of thing since even if the liver mass is completely removed it's not going to be curative. We'll just have to wait and see what the surgeons things. Personally, I'm all about it.

I try not to think too hard about the statistics for all of this expensive treatment. It's depressing. You could spend $200,000 on treatment that, using ensemble statistics, might increase your life expectancy by a month or two. I'm really looking for the 5-25 year range here. I dunno, there's nothing more that I think I can do than what I am. Hopefully I continue to be a statistical anomaly in many senses of the phrase.

In a completely unrelated (to my health) note, Emily and I recently returned from our first real vacation. It was great. We went to Colorado, Utah, and Arizona. We saw many sites of the desert west. Maybe I'll write another post about it sometime.

Maybe it's just the chemo talking

I'm pretty bored, homesick, and depressed today. I have been out of bed for a total of maybe 3 minutes. I don't think there's any good reason for it. I feel alright. I just know that I have literally nothing to do except get cold should I put on some clothes and go downstairs. So instead I choose to stay under the covers and wait for Emily to come home bearing food.

The Oxaliplatin definitely is easier on me than Irinotecan. I felt pretty good yesterday. I still couldn't sleep for crap but I attribute this to the Dexmethasone that I get. The peripheral neutopathy is back, it seems to go away in like 7 days from Monday, so now at least. It is not too intense and is mostly in my fingers and a bit in the back of my throat.

I have been contemplating abandoning our lives in Maryland and moving back to Florida. This what I think is the chemo talking. It would be a huge deal. There are several large corporations headquartered or present in Florida where I'm pretty dern sure I could get a job should I want one. I'd have to talk to their HR people first about my situation and make sure everything is A-OK with that. I don't think my federal "pension" or indeed any survival benefits kick in until 10 years of service (I need to check this). I'm not so sure I'm going to make it to 10 years. Also by an annoying fluke of paperwork and misunderstanding I am not part of the federal group life insurance policy so there is no lump sum of money hanging around to entice me to stay. Honestly, other than the fact that I just really like the particular bits that I do at work, I don't know why I'm here. I get to deal with lots of paperwork and stupid bureaucracy and I get to deal with Maryland winters and Maryland traffic and Maryland parking. Florida I would be close to all of my family members, especially when it's going to count. Oh yeah, and I would expect I'd probably get a pay hike by switch to a private company followed by the 0% Florida State Income Tax rate, followed by a lower cost of living, followed by Publix.

Emily would of course have to make big changes too. Move Addie back to Florida, quit her job, find another one in a really tough market.

I would probably have to engage in "strategic default" (or a shore sale, I don't even really know the different) on my house mortgage here which is something completely anathema to my personal system of integrity. But I guess difficult times call for difficult measures. The bank will be in the same place when I die anyway, so I guess I would just be moving the date up for them.

Then we'd have to pack our entire house into a big moving van and go.

Then I'd have to find a new hospital and suite of doctors and ongologists. I like my oncologist a lot, so that is a bit deterrent to leaving as well.

It all seems like so much. But when I have all day to lay in bed and think about it, it becomes appealing.

Oh yeah, lastly, don't get too excited family. This is purely stream of consciousness writing.