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.

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.

A public service announcement

Also,

Here is a hilariously distasteful video that I think of often:

This is a segment from Don Hertzfeldt's "Rejected" series of cartoons.

Don't let this be you, see a doctor!

:)

I never write here anymore

It really is a shame I don't write here anymore. I'm not sure why. It just never occurs to me. It's not like I don't have a bunch of down time now and again!

But here I am, three months after the last post and life has continued moving along.

I had my regular PET/CT scan a few weeks ago. It was the final scan after six months of chemotherapy (FOLFIRI+Avastin). Unfortunately, it wasn't very good. It showed that there was another lymph node that is likely to be malignant and another lesion on my liver. While that isn't a "dramatic" progression, it's certainly not good given that I spent six months on chemo trying to keep it at bay. Thus, it was decided to move from Irinotecan to Oxaliplatin and see how that goes. The treatment is exactly the same as before but just with that one switch. This is course not good news on the whole as it represents (to me, at least) one more step towards the inevitable. I did however misspeak in a previous blog post. There are no issues with lifetime dosing limitations on Oxaliplatin. However, continued use generally leads to increasingly worse peripheral neuropathy and most people eventually have to stop taking it for some time until the symptoms subside.

I have had one treatment so far on this new regimen. On the whole, I think it is easier on me than the Irinotecan. I have always supposed to had sometimes severe diarrhea but have actually never had this problem (the opposite has occurred, in fact, thanks to the large doses of anti-nausea medication). Lately though my bowels have been all kinds of unhappy about five days after treatment. I did not have much of a physical feeling of exhaustion after the last treatment. One thing that Oxaliplatin definitely does do is a weird sort of peripheral neuropathy. It causes a very strange sensitivity and sensation to cold things on your hands and throat (presumably feet, too). It feels like little ice shards are digging into your hand if you touch anything cold within about five days of getting it. If you breath really cold air or drink something like a milkshake, it feels a bit like your throat is closing. I haven't yet had the sensation of feeling unable to breath completely, but I definitely see what they're talking about. It's only a feeling however, there is actually nothing wrong with you physically. I was surprised how fast this happened (immediately). Right now I think the side effect is gone, but it will generally accumulate to being worse for longer I gather.

One issue that I am needing to continue to sort out is my mental health. If I'm being honest with myself and others, I would have to admit I have some issues now and again with depression. I seem to get over it fast, but there are days where physically I feel fine but I just cannot bring myself to even get out of bed. This is clearly a problem. I'm not sure if I just "need to talk to someone" or if I just want some drugs to "make me happy". I suspect the latter. I've never been one to resolve anything by just talking about things since I feel that I already fully understand the situation. It's just not a particularly easy situation to deal with.

I mean, seriously, how is one supposed to take the situation? If you didn't find it depressing, you should probably be committed! I know every year probably tens of thousands of teenagers and 20-somethings die prematurely, which is of course sad. I suspect most of them die in a spectacularly unexpected and quick manner however. It's another thing to have this gradual slide towards it over the course of years. You don't really have to think about it if you're killed by a small airplane crashing into your house while you sleep, for instance. I don't really think about dying as the first thought in my mind. But it's always there, sort of like some low-grade ongoing back pain or something. I am definitely a bit bitter that this has happened to me and that I'm not going to be able to do many of the things that I wanted to in life. I'm also very upset that I'll be leaving behind a wife, a mother, and a grandmother. I'm not really expecting to live to be 30. I'll be happy if I do. I know that the statistics say that I have about an 8% chance (on average) of living five years beyond 25, which isn't very good. Thus far, things have gone pretty much according to average. So, yeah, I'm not really expecting any miracles.

One of the most agitating things to me personally is that I feel that I could have prevented this all from happening. The initial reason for the discovery of this latest disease was a constant low-grade back pain which felt exactly like what I had leading into Lymphoma. I've been told that there isn't a good medical reason for why having active cancer would cause a weird pain in my back/belly, but it's been a 100% predictor so far. The other concerning thing to me was blood in my stool. See, the thing is though, I had had this problem on-and-off since I was about 19. It was really bad when I was 19 too. It scared the be-Jesus about of me. But I never told anyone and never saw anyone about it. I just didn't want to talk to anyone about it nor did I want a slippery scope exploring the nether-regions of my bowels (I have since found that this is surprisingly not that uncomfortable). It eventually mostly just went away only to come back every once in a while for a short time. I think when I was 25 and diagnosed with this, it had been nearly two years since it had happened. I did mention it two or three times to my Oncologist in Gainesville during the lymphoma treatment. I remember he did say that I should probably get "scoped" but it just never happened. I didn't push the issue. I'm certain it was all one and the same. That little tumor in my colon probably started out as a polyp when I was 19. I never did anything about it until it was (much) too late. So yeah, I'm very upset with myself and I'm going to reap the punishment for it. If you're reading this and you've had/have blood in your stool: trust me, go see a gastroenterologist and don't let him/her brush you off as probably being OK because you're young.

Dealing with a disease like this (that is, an incurable, chronic, and nearly always terminal disease) as someone in the prime of their life is difficult. It would be one thing to be the average colorectal cancer sufferer: in my 60s+, retired, and probably with a litany of other health problems. It's another to still feel like you should be living a vibrant life, that there are wonderful thing still ahead for you, and the need to continue working. It is difficult to balance the needs of my personal life, my treatment, and work. My employer happens to be one of the best I could have possibly had in my situation. I've been given more than 1000 hours of paid leave so far for treatment. That's nuts, that's like half a year of work. I work as much as I can (which ends up being about 70% of full-time). I love my work and wish I could do more but alas I cannot. It also provides one of my few mental outlets, the ability to fully occupy myself for a long period of time. These amazing benefits are finite, however, and I have about 1000 hours left to go. Once I've expunged them, I'm not sure what I'll do. It's hard to complain really, but I will anyway. I don't think anything in the world is designed for someone like me: someone who can only be productive part of the time, unpredictably, and is on a slow path to expiration.

I would love to be able to travel and see other parts of this country (and indeed other countries). But it's so hard to do. I don't really have any personal time to speak of at work, so really any vacation would be unpaid for me. Emily's employer in general has been very flexible as well. She takes off every other Monday to go to chemo with me. That's 26 days a year right there. Any remaining days off we manage to scrape together are usually spent visiting or being visited by family. Then there is the need that what I do slot in with my treatment schedule. I can't really be gone for more than a week at a time and when I do go there are certain times that are better than other from a "feeling good" perspective. This is another unfortunate aspect of the situation we find ourselves in. But we've been here for a couple years now and are doing alright.

It seems increasingly likely that for the rest of my life I will be in an outpatient clinic receiving some form of treatment every other week. I would like to try Xeloda again in the hopes of not having to be connected to an infusion pump for 48 hours as well. I feel like this would improve my quality of life. But only if the side effects are not the same as the first time.

Nonetheless, I continue to generally be healthy and happy otherwise. I want to actually get out and do some cycling and other physical activity this year. Over the last two years my ambition and willpower to do such things has dwindled dramatically (other sign of some form of depression, I guess). After the last round of bad news earlier this year, I didn't get on my bike again. So hopefully I can rectify this in the coming year. I'll make the best of what time I do have left.