Wassup

I am rememering how annoying it can be to type on these nebook keyboards. i give up its too hard. im home finally. Emily has been ; everyone hae been great. more

Coming Home?

Sorry for the several days lapse in posting! Ryan is still at Hopkins, but there's talk of him being discharged today. I've spent the last 2 days talking to all many many people, trying to sort out all of the details.

He's recovering very well from the brain surgery. Unfortunately, the cancer is a whole 'nother issue. His swelling is worse, and while he has a good appetite, he can't fit nearly as much food into his stomach as he'd like. Small meals throughout the day help a bit...

As terrifying as this sounds, we've signed him up with Gilchrist Hospice. Really, it's been an amazing thing thus far. Now I'm not taking him home to an empty house, trying to figure out for myself how to deal with everyday life and his new limitations. The hospital could have helped with some things, but hospice covers much more and gives us a sort of safety net. Once we're home for a few days, if all goes well, we'll transport him to Florida.

So many people have stepped up to help us out with things that honestly I'm just flabbergasted. I don't even know where to begin thanking people for their kindness and hard work. This is such an incredibly difficult time, but we have amazing friends, family, and even strangers who have been standing in the wings just waiting for us to say "please help!" It is so comforting. So, if you're one of those people.. you have our sincerest heartfelt thank yous. And everyone else who is reading, offering thoughts and prayers - thank you to you as well!

Day After Christmas...

Yesterday was pretty uneventful here at the hospital. I gather weekends are quiet here anyway - Christmas didn't help with that.

We did get to talk with a nutritionist yesterday, as well as another GI doc. The abdominal pain and bloating has several causes: liver tumor pressing on the exterior covering of the liver, tumorous lymph nodes blocking drainage from a kidney (which causes it to swell and be painful), fluid build up in the abdomen from the tumors (ascites), and then of course full bowels. We have the last cause under control at the moment, but there is unfortunately not much to be done about the others. There was talk of a kidney study and then insertion of a stent (like he had after his colon resection), and also possibly of draining the abdominal fluid, but Dr. Diaz is pushing for us to get home and then moved to Florida. So...

The doctors on the floor consulted with the pain team, and have upped Ryan's dosages. He seems to be more comfortable now, but the Dilaudid definitely makes him loopy and sleepy.

And that's about where we are today.

I hope everyone had a wonderful Christmas!

Out of ICU

This afternoon, Ryan was moved from the neuro ICU floor to a regular neuro floor. He has a private room, which is nice.. means I can stay here with him!

He is still very bloated (perhaps more-so than yesterday) and that gives him lots of pain. The reaction of the nurses and doctors is just to throw more pain meds at him, but I think that is the absolute wrong way to approach it. So, I've asked to see another GI doc to hopefully get this sorted out. The neuro people are superb with brains, but not good at much else, it seems. I won't take him home before he feels better, even if it means getting discharged and then wheeling straight to the ER. ;) Hopefully we won't have to do that.....

Merry Christmas, everyone!

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.