Something mildly witty

He's Free

2012-01-17T14:55:00.001-05:00

1/08/2012, 1:19am.

No more chemo, no more tumor pain, no more hospitals, no more nasty drugs.

Another Update

2012-01-04T21:22:00.002-05:00

Not a large update in words, but a large one in other ways.

Ryan had several more CTs this morning. Two radiation oncologists as well as a medical oncologist came by to see us after looking at the scans. The cancer is taking over his organs, and while there are technically things that they could do, nothing will give the result that any of us want.. they'll only lead to more time in the hospital, and more pain.

So I signed paperwork again to have hospice take over his medical care. It was scary the second time, too. I'm not ready for this, but I know that he is. Soon he will be free.

Florida

2012-01-04T10:38:00.002-05:00

The past few days have been a whirlwind. Sunday, I called to book transport for Ryan to get to Florida. We decided to go with ACC Medlink, an air and ground transportation service out of Florida. When I called on Sunday afternoon, I was told that they could pick us up that night! Of course, that was far sooner than I'd expected, so we opted for pick up at 7 the next morning.

Ken, my brother, had flown up to help me with things around the house the day that Erin, my sister, flew back to Florida. I'm so thankful he was there, because he helped me scramble around and get everything together for our trip in the morning. He also stayed at the house to organize packing what's left, load it all onto a moving van, and get it to Florida. I honestly don't know what we'd do without family and friends....

The trip down to Florida was stressful on Ryan's body, and the nurse on the van supported me in the decision to take him to the ER at Shands rather than straight to our rooms at a wonderful friend's house in Newberry. His electrolyte balance was way out of whack, and there is a possibility that he also has an infection. Both of these things could be responsible for the change in personality, confusion, and loss of coordination that Ryan had been experiencing. So, the past few days he's been on broad-spectrum antibiotics as well as IV fluids. He's looking better, but his spirits are down. I think he's ready to be done with all of this.

The oncologists here at Shands want to do a few more CTs to check things out and see if there's anything else they can do to relieve his pain. Then hopefully we'll be able to get him home and comfortable.

Wassup

2011-12-30T08:40:00.003-05:00

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?

2011-12-29T10:45:00.002-05:00

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...

2011-12-26T10:54:00.003-05:00

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

2011-12-24T15:54:00.002-05:00

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

2011-12-24T07:19:00.002-05:00

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

2011-12-23T20:31:00.002-05:00

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

2011-12-23T08:47:00.002-05:00

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

2011-12-20T20:57:00.002-05:00

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.

2011-12-12T14:33:00.002-05:00

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

2011-06-12T22:21:00.002-04:00

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

2011-02-15T15:01:00.008-05:00

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

2011-02-06T09:30:00.002-05:00

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

2011-02-06T08:23:00.004-05:00

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.

I have been informed that my last post was "depressing"

2010-11-18T12:25:00.002-05:00

Emily has informed me that my last post was "depressing".

It wasn't mean to be, really. It was more an effort to reflect the reality of the situation to everyone.

I know that many of my coworkers, who I interact with more frequently than most anyone else, don't really understand. It's easy to see why not. I just disappear for a few days every couple of weeks, and then come back to work. I still have my hair (though I have lost quite a lot). I don't "look like I'm dying" or anything. But one day for some random reason I got into a one hour conversation with a coworker about it all and he was rather surprised at how serious the situation is.

So, hopefully everybody knows now.

It sucks, but hey, what am I going to do about it?

Another long hiatus

2010-11-14T22:55:00.003-05:00

This post is going to be short since I want to go to sleep in the near future.

It's been another long hiatus. I should have some kind of resolution to write more often here about my comings and goings. I feel like I lead a fairly predictable life so I feel like there's not a whole lot to say!

After my last post, I had another scan 3 months later and it was not good. I went back to my FOLFIRI+Avastin regimen. I did consult with several other oncologists again, but decided to stick with what had been working rather than try anything new. I did that for 3 months, and had another scan maybe 3-4 weeks ago.

It was sort of so-so. Things didn't seem to get worse, though they didn't get amazingly better. Certainly not the "complete" response I had the first time. This is of course not good news, but not the terrible news I was expecting. I am constantly steeling myself for the worst possible news because it then makes anything else good news. I'm getting another 3 months of the same therapy to see how it does.

Essentially the goal of my treatment is to keep the disease from getting worse. There is no cure for it. The best anyone can really hope for is to keep it at bay and not killing you for as long as possible. Of course, "as long as possible" for a 27 year old has a different meaning that that for a 72 year old.

In the interim 6 months or so I've had to deal with the unfortunate realization that I wasn't "in remission". It was sure nice at first to greet the total radiographic response as evidence I was another wonder case. But it wasn't meant to be and it ended up being painful having to re-accept that indeed I (and Emily) would be dealing with this likely for the rest of my life.

I am constantly thinking about all the bad things that are just waiting around the corner for me. Right now I am on the 1 of 2 possible chemotherapy regimens that are broadly known to be effective against my cancer. It's also the one of two that you can take indefinitely, so long as you can put up with it. The other one has a sort of lifetime dosing limit; eventually, you just have to stop taking it because you will be unable to deal with the side effects further and/or it will kill you on it's own. So, when/if my current chemotherapy regimen ceases to work, I'll have to switch to the other one. And even if it would work forever, I'd eventually have to stop. Then we're in clinical trials territory, I would assume. Anyway in my head all of these logical lines mostly end up with my untimely death. Kind of sucks really, but at least I've accepted it. I'm not sure everyone else is as okay with it as I am, though!

Of course, I'm not looking to die anytime soon and will be willing to subject myself to way more than most people with this disease would think of, much less be physically capable of handling. And of course I'm hopeful that the current course of treatment continues to be effective for the long haul. It sucks, but if I have to spend 40% of the rest of my life getting chemo, it's definitely worth it for the other 60%. Broadly, I'm happy about all the things in my life. It's just that damn thing called one's health that I'd like to change a bit.

Doing well

2010-06-02T21:27:00.003-04:00

I feel a little bit bad that I never update this anymore. I guess my sense of urgency is gone? Well, in case people are still checking it:

I'm doing just fine.

It's been a couple of months now that I've been off of all treatment and we're basically just playing a "wait and see" game with it to see how things go. My last PET/CT was pretty much fine. There were a couple of possible future trouble spots in my right lung, but they were so small nothing definitive could be said. Maybe they'll be gone next time, maybe not.

I've been very happy that I've been free to do basically whatever I want. I've been working full time and having a grand old time doing it. My energy level has returned. Emily and I went camping last weekend (or the weekend before? I can't keep track).

I've been trying to exercise more. I've been doing alright at keeping a weightlifting schedule, though it's slipped over the last week. I finally got out and rode my bike last weekend. The route I took you can explore here.

My back has been hurting strangely for a while now which sure doesn't make me feel really positive about things. I had the PET/CT though after it started and they didn't see anything wrong and certainly nothing that would explain the weird pain. So I've just been ignoring it and waiting for the next scan to see if things are still normal. If they are I guess I'll have to go see some other doctor about what is wrong with me otherwise. I'm really not all that gung-ho to go subject myself to more doctor visits. I'm also pretty pessimistic about things but I'm happy that I'm enjoying myself now and hope that it stays that way.

Another long break

2010-04-18T19:38:00.004-04:00

It has been a long time since I've posted on here. I don't know who still checks it. RSS readers are great for people like me.

John Scofield, whom some of you may recognize by mention in some of my blog posts and his comments here, passed away today. He was in his mid-30s and had metastatic colorectal cancer as well. He switched oncologists a month or so ago to try some more research-y treatment and he seemed optimistic at the time. I never had the chance to meet him in real life. I'm not sure if it actually was, but it sure seemed sudden to me. It's really very depressed, sad, and scary for me personally.

Emily knows his widow from knitting. I hope she has time to post details of when the memorial would be. I would very much like to go.

Things have been going pretty well for me. I've been working a whole lot more and it has been very rewarding to not be stuck around the house so much. My main computer died a week or so ago and I built up a new one but it has been very annoyingly unstable. I don't feel like writing a whole lot more about myself right now, since really what I wanted to do was just reflect on John.

A month gone by

2010-01-23T23:28:00.004-05:00

So it's been more than a month since my last post!

Things have been pretty normal, which I guess is good for me.

I had another PET/CT at the beginning of January and it was perfect once again, which of course is good news. Also my CEA level has been very low for some time now.

The new car is very nice, though is have given me a few troubles. For some reason lots of fluids in the car seem to get low. This car is fancier than my last in that it actually has sensors to tell you when something is low, rather than completely gone and damage is being done. The engine coolant light came on and I took it in. They said there wasn't any leak and topped it off. Why was it low all of a sudden? Who knows! Recently the brake fluid light has going nuts, and indeed the fluid was at about the low line. I topped it off myself, though I'm taking it in this week to make sure there isn't anything amiss.

Erin and Perry (sister and brother-in-law) came up and visited last weekend. It was good to see them and spend some nice quiet quality time with them.

Emily's 28th birthday was this week. She opened presents from various relatives and one from me (she figured out what it was! Though, she was there when I bought it.). Then we went out to eat at the Dogwood Grill in Baltimore, which recently reopened after like a 6 month hiatus (don't know why they were closed). The food was very good. We'll have to make it a point to take visitors there in the future!

Friday (Jan 22nd) was my one year colon resection anniversary. Yay! I can't tell if it feels like more or less than a year. Time seems to go by quickly in general even with the chemo and what-not.

Today Emily and I went to the Red Canoe and ate lots of food and came home with many muffins.

The chemo has been catching up with me, 10 months in. My hands and feet started to peel rather badly again the last time I had a dose. I took a one week break because of it, which tossed my normal 2-week schedule off kilter. It was really nice to have another week in there without the chemo. I had forgotten how nice it was to have a sense of normalcy. I've been doing some pretty interesting things at work and am a bit sad to have to stop again for 3 days. That one week break really reminded me what I'm missing out on. I'm trying to stay with the 2-week schedule for at least a whole year of treatment, but come a year or so I think I'm going to push the schedule out to every 3 weeks or something. I'm in no-mans-land statistically, so I'd rather have a higher quality of life and see how it pans out with the cancer. I still won't accept the fact that I'm "better", after having come to terms with a reality (which seems to have been avoided) which was significantly less nice. As much as I wish I were, I have to try to keep things in perspective and remember that even though it sucks a lot, I've got to do everything I can to stay healthy.

I've got another chemo dose this coming week, ick!

The week after this coming one I'm planning to visit a friend from high school and his wife in Raleigh, NC. He's getting his PhD in Materials Engineering at UNC. I've never been there, and though the dead of winter is probably not the best time to visit, I think it will still be nice. I hope Emily can come, but I don't think she'll get the time off work.

We still have our foster greyhound. Emily wants to keep her. Too bad I don't want a dog! I like her a lot, but I definitely don't want the long term commitment she represents. I hope someone adopts her before Emily absconds with her or something!

omg snow

2009-12-20T18:30:00.006-05:00

We got about two feet of snow last night. I spent pretty much the whole day today shoveling it. Baltimore County has not deemed our street important enough to plow, so I'm not sure I'll be able to get my car out when it eventually turns into ice. Here's a bunch of pictures:

New car

2009-11-29T11:54:00.004-05:00

So I bought a new car, a 2010 Volkswagen Golf Mk6 TDI with a DSG transmission and the "cold weather package" (heated front seats, heated side mirrors, heated washer nozzles). It's a diesel and it gets good gas mileage (I averaged over 46mpg on the way home). It certainly is nice to drive. It'll be hard to ever go back to a "lesser" car now! Of course I'll probably live to regret it when the warranty ends and I have to pay to maintain this extremely complicated vehicle.

Apparently there are only about 400 of these particular vehicles on the country right now, and I had to drive 130 miles to New Jersey to get one that I wanted.

In the parking lot at the dealer. It was a cold and dreary day.

Emily took this while she followed me home from New Jersey.

The steering wheel, with multifunction controls and paddle shifters.

The rear TDI badge.

Emily is the official picture taker and she didn't take any pictures of the whole car, oh well!

A productive weekend

2009-11-22T22:37:00.001-05:00

I've had a decently productive weekend.

On Saturday: I had blood drawn and then went grocery shopping. We didn't too much groceries, so that was nice.

Then, I raked a ton of leaves out of the yard and cleaned up the gardens a bit. I also drilled some holes in the side of the house and attached a hose holder and actually secured the faucet we use (it was just sort of sitting a whole, so the lateral force of turning it on/off was being borne by the copper pipe). Then I swept off the deck.

I worked out on "the machine" for the first time in recent memory and my muscles were certainly sore afterwords.

Emily was out at the barn with Addy since about 12:30. I was hoping to get out and do some Christmas shopping for her, but she was home by the time I was ready to go.

Saturday night we went to Trader Joe's and bought some more yummy food and got some Creme Brulee coffee things from Starbucks that Emily discovered. They were really sweet, but yummy. There is this "challah bread" at Trader Joe's which is just extremely yummy bread. I never actually use it for anything other than just eating for bread's sake.

Sunday we went to Red Canoe and got some yummy soup and lots of muffins. So now we'll have breakfast the next few days too. Something to look forward to when waking up! Sunday was an absolutely gorgeous day outside. We didn't really do very much out there though. We took Radar to an open house for a few hours which was entertaining. She really got along well with the other dogs. She seemed happier than she has been since we've had her. She'd be a good second dog, I think. After we got home from the open house I fell asleep for a couple of hours and squandered all of the good weather.

Tonight we made Indian food with some masala simmer sauce, various kinds of peppers, tomatoes, onions, and chicken. Very yummy stuff. After we ate that we walked to dog, then watched the second Top Gear episode of the season.

Tomorrow is another chemo day which sort of sucks. Oh well. I don't think I'll be working at all this week. Hopefully I remember what I was doing when I make it back.

Oh, also: I bought a car. Or at least I put a down payment on one so it has my name on it. It's a 2010 VW Golf TDI 2-door. I wanted one with Xenon HID headlights, but there are actually none in the country yet and I don't feel like waiting. I'll get the $1700 tax credit and the sales tax deduction on my federal taxes, so the federal government is giving me a sweet deal to buy a German car. This will be the first new car I've ever bought, or for that matter the first at all that I've ever bought. I suspect it will be nicer than my Saturn. The dealer guy was supposed to call me on Saturday and give me a final figure so I could deal with the bank this week, since I'm planning to pick it up the day after Thanksgiving. He didn't call me though so I'll have to hound him tomorrow (I swear I get the impression they don't want to sell any cars) so I can get the bank stuff done before the bankers leave on their holiday.

The weekend

2009-11-15T21:30:00.004-05:00

Rob and Barb came over on Saturday for a lunch. Though it was a pretty big lunch and ended up being dinner. The day started off drizzly but it cleared up and ended up being pretty nice. We grilled some steak out on the porch, had some salad, and some yummy potatoes. Rob and Barb brought brownies for dessert. It was good to see them again. I've pretty much lost touch with most of my old coop friends even though we all live near each other. They just celebrated their three year anniversary which is pretty crazy too!

Today was a gorgeous day. It was sunny about 70 degrees outside. Emily went out and rode her pony and took pictures in the morning. I took her car to have new tires put on, balanced, and aligned. Finally, her steering seems to be mostly normal. I went to Advance Auto Parts to try and get stuff for some routine work (new distributor cap, rotor, spark plug wires, etc.) but they didn't have most of it in stock. Shortly after that we went to Patapsco for a short little hike. There were tons of people who had the same idea. Most of the free entrances were jam packed with people parked all over the place but we found a spot on the Landing Rd/Cascade Falls entrance.

My tummy hasn't been feeling good all day. I kind of want to suspect the steak since I never eat it, but who knows.

Also, we got a new greyhound Saturday morning. Her name is Radar. She is pretty cute. She had already been in a foster home in Florida so she seems to be totally acclimated to life outside the track. She's not much of a walker though, you almost have to drag her out the door just to get her to go potty.

I decided that I definitely want a 2010 VW Golf TDI though it is proving difficult to find one that I want. They're rather in demand and most of the dealers around here don't have many in stock, and none have one that I would buy. There's one in New Jersey that is getting one that I would want but I don't really feel like messing around with getting one out of state. I need to call some more local dealers tomorrow and see if any of them are expecting some more.

Lastly, the new season of Top Gear started today. I managed to already get and watch it. It was pretty entertaining, though certainly not one of the best episodes I've seen. At least we have something fun to look forward to for some number of coming Sunday nights.

Being an adult sucks

2009-11-12T23:45:00.002-05:00

How is it possible to have fun as an adult? It seems like there's just a never ending list of things to be worried about or spend money on. sigh.

Emily's car has been giving us fits this week. It's been out of commission all week long just to have a front brake job. Then we're replacing 3 tires, balancing, rotating, and aligning them. It'll cost a lot. I feel a bit silly given that the car is 11 years old, has 111k miles, and is worth like $2000. But then again it hasn't given us that much trouble so maybe it'll be worth it to keep it safe and running in the long run.

It the midst of my burning hatred of having car issues buying a new car (for me, hah!) has been brought back to the forefront of my thought.

I'm pretty sure I want a 2010 VW Golf TDI w/ DSG transmission. There's a $1700 tax credit for the DSG over the $1300 for the manual. That's pretty substantial money there. Plus you can write off state taxes on your federal taxes through the year. I've been in contact with the same VW guy we some months ago, he's pretty friendly and not pushy, which I really like. I still have dreams of moving to England in 2-3 years, and all VWs come with 3 year/36,000 "everything" warranties (e.g. oil changes included and stuff) (of course, you actually pay for this service in the cost of the vehicle, but whatever) ... so I wouldn't have it long enough to have to worry about insane problems!

We are very busy this weekend. Apparently we're getting our first greyhound in a long time to foster. I'm not sure how I feel about that. I don't think we have enough time amongst us to do all the things we want to and take care of a dog. But we'll have to. Also, Rob and Barb are coming over for a BBQ (though it might be cold and rainy). So maybe next week sometime I'll go test drive some VWs.

The 2010 VW GTI I'd like to test drive too, but it costs slightly more than the TDI, gets poorer gas mileage, and uses premium fuel. But it has 200BHP and does 0-60 in 6.7 seconds. It's probably insanely fun to drive. I drive like a granny anyway though, so who am I trying to fool?

Finished my workbench

2009-11-11T14:32:00.006-05:00

It's been like a month and a half since I wrote anything on here. Can you tell I lost some steam? Emily and I haven't been up to a whole lot of exciting things. Pretty much the same schedule as usual, chemo every two weeks.

Emily's mom came up and visited and we had a fun time going to the Shenandoah Fiber Festival and out to Frederick, MD for a day.

The weather is certainly getting colder up here. Looks like I won't be doing any more biking and that we're not going to go hiking or camping this year. Oh well.

Last weekend I finally finished my workbench and adding a few circuits to the basement for said workbench. Emily took a bunch of pictures, which I am dutifully reproducing here:

Squirrely got into some cobwebs while down in the basement.

Colonoscopy and pictures

2009-09-26T10:55:00.005-04:00

So I had my colonoscopy on Friday. It went well. Dr. Jani found a few internal hemorrhoids, as was expected, and some inflammation around my anastemosis (the point where the reconnected my colon after the resection). That wasn't expected and he took a biopsy. I gather it's likely not anything to be worried about... maybe they'll just give me some antibiotics or something.

I got to get doped up on Propofol again. That stuff is ridiculous. Apparently I was hilarious when I was coming out of it.

Afterwards, I ate some food finally. Then Emily and I drove out to Thurmont to watch her horse instructor give a lesson to a barn friend of Emily. It took forever to get out there and the directions were really squirrelly, but we made it. It was certainly very pretty. It was nice to get out of the house. Then we went down to Frederick and ate dinner at Nido's, a very yummy Italian restaurant.

Here are some pictures:

This is the funny shirt Holly bought me for my birthday.

This is me and a Chinese Crested, Cutie, at the farm yesterday. I hadn't been there or sitting down for more than a minute or two before she jumped in my lap.

This is the other Chinese Crested at the farm, Cookie. Apparently she was cold.

Birthday and concert

2009-09-20T11:38:00.002-04:00

So my birthday has come and gone. It was fun. Emily bought me some presents and Holly got me a funny shirt, for which pictures exist but I don't have them yet. That night we went to Baldwin's Station for the first time to eat. It was a nice place. I've been fairly cold lately and I forgot a jacket and we ate outside, so I was pretty cold for a while unfortunately. My food was excellent and I totally gorged myself though. Emily also thought her food was very good. We'll have to add that and Sykesville to the list of places that we take people visiting.

Last night we went to see Thievery Corporation. The music was very good and the performers (there were sometimes up to 14 people on stage I believe) were all very good. But again, the same complaint I had about PJ Harvey only more so this time: the bass is mixed WAY too loud. I appreciate that they have a bajillion watts of power they can use to shake our insides, but good lord I want to be able to hear something other than deafening bass. It definitely diminished the enjoyment of the concert. I really like the Ram's Head On Stage venue in Annapolis (where we saw Marcus Miller and Ingrid Michaelson) because it's small and they appear to have competent engineers who mix things well. The sound has always been excellent there.

I was thinking last night of all the bands I have seen in concert and I think I will collect them here for posterity, in roughly chronological order to the best of my memory:

Less Than Jake (several times)
RX Bandits (opened for LTJ in like 1999)
311 (several times)
Jimmy's Chicken Shack (opened for 311)
Korn, Rob Zombie, Orgy, and Videodrone (one concert)
Bela Fleck & the Flecktones (several times)
Medeski, Martin, & Wood
Bela Fleck & Edgar Meyer
London Royal Philharmonic Orchestra
Gipsy Kings
Stanley Clarke, John-Luc Ponty, and Al Di Meola
Bela Fleck, John-Luc Ponty, and Stanley Clarke
George Duke & Stanley Clarke
Pancho Sanchez & the Orlando Philharmonic Orchestra
Nine Inch Nails, Bauhaus, and TV On The Radio
John Scofield
Ingrid Michaelson
Marcus Miller (once solo and once opening for George Duke)
Pine Leaf Boys
PJ Harvey
Thievery Corporation

Surely there are many missing here, but I'll have to come back and add them as they pop into my head. Also can you see my musical tastes changing from 8th grade to now?

Some more updates

2009-09-17T17:14:00.002-04:00

I had a PET/CT a week ago now. I haven't seen Dr. Kasamon yet about it (and other things) but I did get an email where he mentioned that it was again perfect, which is excellent news. I also had a renal ultrasound which showed my kidneys are performing perfectly after my stent was removed.

I saw my dentist again and he fixed a filling that I had cracked. A day after that another one cracked. That's three this year. I am very unlucky. Today I had my teeth cleaned and x-rayed, and there were not any other cavities which is certainly welcome news.

Next week I have an office appointment with Dr. Kasamon and I've having another colonoscopy with Dr. Jani. Not really looking forward to the colonoscopy, but it will be first super thorough inspection of things since the surgery. It's actually to identify the source of some GI bleeding I've been having which is highly likely to just be some internal hemorrhoids. Avastin can cause that to happen in some people. Hopefully he finds them and I get a clean bill of health from that one.

I do not like Xeloda. I'm going to go back to the IV 5-FU. Yeah, it sucks having the pump for 2 days. I also didn't like the side effects of the anti-nausea and steroid, but I think I can get those waived as well and just treat nausea as needed. It sucks way more not being able to use your hands to really do much of anything for 2/3 weeks and not being able to walk straight because your feet hurt. That sucks a lot more. I have pictures of my peeling hands that maybe I'll put up one of these days. I tried it at least. It was more convenient in some respects, but all in all seems to be the less good option for me. At least with the IV I have basically no side effects at all and am good to go once I get disconnected.

How exactly I'm going to live with this in the long term is an interesting question. I'm eventually going to have to start working full weeks again, and the IV is going to be annoying. I'll just have to go into work with the pump with me and probably work some time on Saturdays now and again. Sucks. Oh well. The textbook treatment scenario is that I continue taking 5-FU and Avastin indefinitely. Well, for most people that means at most a couple of years (then they die). If indeed I am still a paragon of not having cancer in a couple of years, I think I'm going to give some push back as to whether I really need to be taking this stuff all the time. No doctor is going to take me off of it because they don't want to be responsible should it come back. Since I am such a statistical outlier anyway though, nobody really has any idea what I should do. I think after I've put with this for a while I'd be willing to roll the dice and see if it comes back. If it does, oh well, I'll go through treatment again. If not, great.

Emily and I were planning to go to a demolition derby last weekend, but it was rained out. This weekend we're going to see Thievery Corporation in concert. Hopefully that is fun!

It's almost an afterthought to me, but tomorrow is also my birthday. Emily has bought me some presents, so I get to open things too!

Long time no post!

2009-09-02T19:23:00.007-04:00

It seems like it's been forever since I've made a post on here. I'm losing steam of keeping this thing up to date. Seems like I just write the same thing over and over. I forget where we left off, so I'll just guess rather than take the two minutes it will take to read the last post.

I have had one cycle (which is two weeks on, one week off... I'm on the off week) of Xeloda. I like it from a convenience perspective. It definitely made me more fatigued than the two day IV did. I also developed much more severe hand and foot syndrome by the end of it. It wasn't too bad up until the last couple of days. By the last Sunday and the first Monday off (this Monday) I basically couldn't walk straight because my feet were so sensitive. I talked to Dr. Kasamon about it today and he said my symptoms "weren't that bad" and he is right given how much worse it could be, though it still sucked. There is a fine line to draw between managing symptoms and killing cancer. We're going to work through a few more cycles titrating the dose down until we can get it so that the irritation doesn't get quite to the point it did this time.

We also (again) discussed how weird my particular presentation of rectal cancer was. He commented that if my primary tumor had been higher up in my colon it likely would have taken 10 years to metastasize it's way out. It's probable that mine took a lucky quick route out of my rectum into this peripheral lymph system that runs up and down your spine, which could explain my distant metastasis in my neck. Nobody will ever know for sure though, not that it really matters either. We also talked about Horner's symdrome (one pupil bigger than the other), which is what they're calling what I have. Apparently there are two sets of ganglions (like mini-brains, just a big ball of nerves) running up and down your spine on each side that perform a sort of first-pass processing of nerve signals before getting to your brain. Well it turns out that one of the ganglions that control some muscles in the face and eyes is right next to your subclavian vein where central lines (e.g. a port) are placed. It's odd that it took so long after having a port and what-not that this happened, and it's also odd that it's on the opposite side. But interesting nonetheless. I'm going to see a neurophomologist sometime in the near future who specializes in this sort of thing. I doubt there's anything really to be done about it, but we'll see. For whatever reason this month is absolutely ridiculous in terms of doctors visits and things of that sort. I count about 15 appointments that I have over the month of September.

I went for a bike ride today, first one in quite some time. It didn't go so well. I'm in terrible shape, and I had a milkshake at lunch. That was also a bad idea. I hope that I can make it out to ride at least vaguely more often. Even the 45 minutes today was a hell of a lot better than the nothing that I usually do. I want to go camping this weekend, though I haven't yet shared this fact with Emily. Maybe we'll drag Pat and Minh Chau along too! The weather here has been absolutely gorgeous the last few days and will continue to be as such for another week or so it seems. A cold front came through. Lows at night in the 50s, highs in the day low 70s. It's like Fall only earlier!

Emily and I bought a "real" bed finally this Monday. No more sleeping on a futon, though I have come to rather enjoy it. I suspect neither of us is sleeping all that well thanks to it though. As several of you have figured out, we spent an obscene amount of money on a queen size Tempur-Pedic "RhapsodyBed". We've slept on one before (at Emily's former Florida neighbor's house) and it was pretty amazing. Tempur-Pedic pillows are also very nice and they kindly threw a few of those in to sweeten the deal. But good lord does the stuff smell terrible out of the factory! We've got a pillow in my room airing right now so it doesn't gas us in our sleep. So we skipped from futon to one of the most expensive "sleep systems" you can get! Woohoo!

Here are some pictures from our Florida trip:

This is me sitting under an umbrella at the pool.

A big old Florida banana spider

A couple of big ole' Florida banana spiders

Back from a vacation to Florida

2009-08-17T22:25:00.003-04:00

My blogging has been getting more and more infrequent it seems. Mostly because there isn't a whole lot to report. All the exciting stuff happened months ago, and I would be perfectly fine if no more exciting things ever happened to me.

Emily and I spent the last eight or nine days in Florida visiting relatives. We rented a condo on (well, near) St. Augustine beach. My family had a condo in the same building for a few days overlapping as well. So on Saturday night we had a big family-family get together and a faux, belated wedding ceremony.

We spent the rest of the time just doing not much of anything and eating. I spent a total of about two hours on the beach. I really just don't like it all that much. It's really hot and the sun is beating down on you, and I dislike putting on lots of sunblock over and over again. Emily had a good time though. We went out at night once and watched a storm over the ocean which including much lightning. I like that. No sun.

It was excellent to see all of my nieces and nephews, and everyone in my family again as well. It would be great if we could make a habit of it but I just don't see it happening. Neither of us can plausibly get enough time off every year to take a week in Florida and do something else (and there is a huge list of things we want to do). Oh well. We also went to Gainesville for a day to see Dragon's Lair farm again (and Randal and Celia and all the pets). Later that night we caught up with Chelsea and Steve and ate dinner at Satchel's Pizza. Even though I grew up on the east side of Gainesville and remember Satchel's opening and thinking "what a weird place to put a crazy pizza place", I never manged to eat there until now. It was great. Emily took about a thousand photographs over the course of the trip. Sometime I'll put some highlights on here.

Today was a chemo day, though we were only at the infusion center for about an hour. All I received was an Avastin drip. This morning and evening I took my first dose of Xeloda. The pills aren't too big, but I get to take seven of them. It's still way more convenient than the alternative. It's still way too early to tell how I'll tolerate it. Right now I feel fine. I even went for a 15 mile bike ride this evening, which was nice. My feet are peeling, which is part of hand and foot syndrome. It's probably from all of the walking and sand I encountered in Florida. It doesn't hurt, but I can easily see how if it keeps up it could. I didn't know how I'd feel for the day, but it ended up being very good.

I got a call from my boss while I was on my bike ride about payroll for the week. My "vacation" is at the moment an unpaid one it seems. I suspected this was going to happen, and it did. "They" (work in the big sense) think I don't have any annual leave to take, which I don't according to the system. But my understanding of the sort of disability system I'm on is that out-of-band from that I can accumulate 40 hours of annual leave and then use it accordingly. I thought I coordinated it with the leave people, but apparently they don't think so. So it's entirely possible I took a one week unpaid vacation, but it was worth it. It would be nice if in the end I get paid though.

Oh and one more thing. This morning we bought tickets to see Thievery Corporation play in Baltimore. They don't have concerts all that often and I seem to miss the ones around here. But not this time! We got excellent seats (second row from the front, dead center) since we bought them about 30 seconds after they went on pre-sale. We almost got the first row, but they were sniped out from under us! They were expensive too, but we never go see concerts anyway so it's okay (way to rationalize!). The concert is the day after my birthday, so maybe it's a birthday present to myself.

Been a while

2009-08-02T18:41:00.002-04:00

It's been a while since my last post. Not a whole lot has been going on. Just normal "life" things.

Last weekend Emily and I went out to Frederick and ate at a Cuban place for lunch (which wasn't altogether impressive). Then we drove up to Catoctin Mountain Park and hiked around for a couple of hours, nothing too serious. Though it was good to get outside. We missed a turn or something and ended up on a mountain road and had to walk a few miles back on it. The route was supposed to be a loop through the woods. Oh well. The original plan was to drive back to Frederick, waste some time, and eat dinner at Nido's, a nice Italian restaurant. It seemed a little silly to eat out twice in one day, but whatever. We were still quite stuffed, and I honestly wasn't feeling all that good, after our hike so we just came home.

I continued to feel worse and it culminated with some stomach emptying in the wrong direction in the middle of the night. I felt pretty terrible on Sunday as well. I thought I might have been constipated, because when you get really constipated your tummy rejects more stuff being put into it. I took several methods to alleviate this which eventually worked, but honestly I'm not sure I really was all that constipated. I didn't see it coming and usually I can. I think I just got a stomach bug or the Cuban didn't agree with me. I went to work on Monday though.

In fact I went to work all week long and it was mildly eventful. I finally finished my "performance review" documents that one must fill out to theoretically get promoted at some point in the future, though I am under no pretensions that I will get a promotion this year. I felt like just putting "Got cancer, had chemo, un-got cancer" on it, but refrained.

This Saturday we went out to Red Canoe for lunch. I really like that place. I think it might be my favorite place to go eat in this area. It just exudes small-town local charm, even though it's square in NE Baltimore. The owners are extremely friendly too. I find myself wanting to go there and buy lunch, coffee, dessert, and muffins for breakfast all at once. (and I usually do)

I have chemo on Monday again. Saturday we leave for Florida for a whole week, which will be great..

I saw Dr. Kasamon again on Friday. I have a prescription for Xeloda (oral 5-FU) which we're going to try out starting with the next treatment. That means I will come in on Mondays for a 30 minutes infusion of Avastin and that's it. I don't have to take a pump home either. Because Xeloda works over a longer time they can take my blood on Mondays as well, rather than me having to go in on Fridays or to Quest on Saturdays for blood work. It promises to be a great way to transition back to more normal life. It is possible it will have worse side effects for me though. Won't know until I try. I know John S., whom some of you have seen in his blog, has had terrible problems with Xeloda. But he seems to have exactly the opposite sorts of problems as me. Anyway, like I said, I won't know until I try. It'll have to be pretty bad to get me to sign back up to a 4 hour injection, 46 hours of home-pumping, and constipating for the next 5 days.

Also, Xeloda is about $3,000 a month! The IV 5-FU (which has been off-patent since like 1960) is like $50/month (not including the cost of getting it into me via IV). I met my catastrophic deductible for the year long ago so I am in the strange position of not caring how much anything costs because it costs me effectively nothing.

It's been ten days since my last post!

2009-07-22T08:12:00.005-04:00

I finished that plumbing project. Nothing like necessity to speed things up, eh? I've now snaked the drain a few times and it appears happier. One of these days I should probably get a real plumber in here to auger the whole underground pipe. But why pay for something now that I can to get much worse later?!?

Well I had a pretty uneventful week up until Thursday night when my mom and Holly flew in. We hung out for the whole weekend and it was fun. Emily and I introduced them to Top Gear and they thought it was hilarious, as all real human beings should. We ate lots of yummy food. We went to Ackbar's for dinner Friday night (their first Indian food, I believe). We ate at Red Canoe for lunch on Saturday, Indian food (leftovers) for dinner Saturday. Sunday we amazingly got up the energy to go into DC, walk to Georgetown from the Foggy Bottom metro stop, explore the cozy expensive neighborhoods, and went to Dumbarton Oaks (definitely a worthwhile trip, especially during flowering season). After that we had some much needed ice cream based food-like things. Then we stopped at Metro Center and ate at Chef Geoff's again. Sadly mom thought the bun on her crab cake was stale, which was certainly very disappointing. I ordered the same thing I did last time (basically Indian-style chicken) and it was just as good.

Didn't do much in the way of work or exercise by virtue of all these things.

Last Friday I had appointment with Dr. Kasamon (just a regular one). Mom and Holly came along. I was going to have them sit in with me, but he was running unusually late by 10:30AM so I decided against it, he came out and said hello at the very end though, so at least they know what he looks like or something. Another reason is that I didn't want crazy questions from mom getting in the way of my pre-prepared list of questions and concerns. My mom had pointed out (first thing upon seeing me at the airport) that one of my pupils was hugely dilated compared to the other. That's generally not good and nobody has ever pointed it out to me nor have I ever noticed it myself. But it's definitely true. So Friday Dr. Kasamon had me go to a STAT brain MRI. (MRIs are neat). Apparently there isn't anything seriously wrong. At least no masses or edema or blood clots. I haven't seen the MRI report yet so don't know if contains any other little notes. I have persistent headaches that occur right behind my right eye (the screwy pupil one), nosebleeds in my right nose, and earaches in my right ear. Something seems fishy. I kind of thought it was some kind of new found allergy, which maybe it is. I am going to see a neurologist recommended by Dr. Kasamon some time though, so maybe we will sort out my crazy brain.

I had another treatment on Monday. I didn't feel too hot at first, but not too bad. I slept marginally better than the week before. My brain wasn't running at a million miles an hour, but I kept waking up some rather bad acid reflux which is quite painful. I still haven't quite mastered the right cocktail of drugs to try and bring that under control. Then I just felt awful for all of Tuesday. I can't put my finger on it, but it wasn't right. I had a big headache and my stomach just felt bad. I took an Ativan (along with an Aspirin) before bedtime and I slept like a baby. I feel pretty good right now.

I put a feeler out to Pat to see if he wanted to do something this weekend. I kind of want to do something outside involving hiking and/or camping. I was looking at kayak stuff too. Emily seems pretty keen on kayaks though I've never really been in one. Not sure we want to blow a substantial amount of money on yet another hobby that we'll indulge in once in a blue moon ;) Though I think hiking might be all we accomplish (this weekend at least). Biking would be good too, but I'm the only person with a bike so meh.

We're back in St. Augustine from August 8th through August 16th. We're certainly looking forward to it!

This is me hiding in some bushes at Dumbarton Oaks.

How is it that chipmunks are so cute?

A bird of some sort hopping along a water feature at Dumbarton Oaks.

Stuff

2009-07-12T16:58:00.004-04:00

So another week has gone by. It was a chemo week. I had fewer side effects this time around than before. I still couldn't sleep very well on Monday night and had some pretty bad stomach acid in spite of the Protonix. I actually suspect it is the Aloxi (anti-nausea) that is giving me the most problems. I don't think I really need it but they seem to continue to think so. I will discuss it with Dr. Kasamon at my next appointment. I slept a decent bit on Tuesday and didn't feel so hot, primarily thanks to the night before. Wednesday I had the port out and, well, that was about it. The hand and foot syndrome was not as bad this time around as last.

We still don't have any furniture for our porch and Emily is getting a tad cranky about it. I'm not paying $100 to have $120 worth of flat-pack furniture delivered though. We are both sitting out on the hammock now. Emily is reading a book and I am obviously on the laptop.

Still no forward progress on that workbench.

Wednesday night we ate at Akbar's, an Indian restaurant in Columbia. The food was excellent. I never knew I liked Indian food so much. Our server guy was hilarious but I think he forgot we were there for a while. I was in no hurry so I didn't care. There were very few people there.

Saturday we did absolutely nothing. We never started the cars, which was a nice change. Emily weeded and generally kept her gardens, I mowed the lawn. We both worked out later that night too. I've got some sore muscles around my dorsal area.

Today Emily went out to the barn and rode Addy and I went with her. But this time I brought my bike along and went for a ride from there. I have never explored out that way before so it was an adventure. I did a nice little 13 mile loop that wasn't overly hilly but plenty to give me a workout today. I'm pretty sure there is just no substitute for getting on a bike and doing hills. Lifting weights and cross training just doesn't equate. I can do 3 sets of whatever quad exercises, but climbing one hill I must do the equivalent of a 100 reps. It was a good ride. I felt stronger already than the week before. I also passed a house whose owner must be a Ham Radio guy because he had literally the biggest antenna field I have ever seen before. There were like 7 towers and at least 14 antennas. And the towers were not short. I wish I had taken a picture with my cell phone. Another time perhaps.

After we got home and cleaned up we went to Scittino's for some super yummy pizza. We skipped Opie's this time. But we did get some lunch meat for the week and Emily bought some canolis and canoli filling (her original reason for wanting to go).

Mom and Holly come up for a short visit this week. We'll be no doubt gorging ourselves on yummy food since it's about the only thing Emily and I know how to do.

edit: we have this annoying drain in our basement (for the kitchen sink and the utility sink in the basement and hence the washing machine as well) that clogs up. I have a snake and it has worked like a charm in the past, but there is no easy access so I have to disassemble things to get the snake in. I bought the PVC to put a snake entrance in, but haven't actually put the PVC in yet. I might do it tonight because it's clogged up again.

Also here are some pictures from recently:

Getting ready to ride out at the barn; notice the scrawny legs.

Off I go!

This isn't from this weekend but is typical weekend behavior for me. Notice Squirrely slumbering as well.

edit 2: I started working on the pipes, cut one in half and then realized I only have CPVC cement and this pipe is PVC. *sigh* Going to Lowe's first thing in the morning to buy the right cement and put it all back together permanently. Also, the reason it clogged is because the new lint traps we (were) using on the washing machine suck and were letting a ton of lint down the drain, so it all piled up and there is presumably some really nasty ball of crap about four feet down the pipe. I got it opened up to some degree I believe with the snake.

Three (six?) day weekend

2009-07-06T10:49:00.002-04:00

It was a three day weekend (Friday) off. Maybe it's a six day weekend for me, though I'm not inclined to count M-W of this week as vacation.

Friday we didn't do a whole lot. I went for a bike ride, first one since the stent came out.

Saturday we had a 4th of July party/BBQ thing. Pat and Minh Chau came, as did Trevor and Dave. We've never had that many people over at once. It was nice to have people over. We're basically shut-ins the other 90% of the time. We had all sorts of food that my mother and sister wouldn't approve of. There were shrimp, a flank steak, hamburgers, and franks. I was the only one who ate franks because I wasn't really all about the rest. I hear it was good, though! Minh Chau is very good at cooking things. She was in charge of the shrimp (which I did have a few of) and the steak, which came out a lot better than the hamburgers which I was in charge of. It was good fun though. Amazingly Emily didn't take any pictures though, so nothing to share graphically!

Dave brought over his extra software-defined HF radio, the FlexRadio SDR-1000. I've got a stack of cables and stuff now. I need to fashion an antenna. I'm thinking a T2FD antenna, or perhaps an inverted V/sloper. I also need to open my computer up and install a card and get a bunch of software installed and working first. Dunno when I'll finally get around to doing all of that! I also am not allowed to transmit since I've never bothered to upgrade my Ham license above Technician. I've been reading the question pool for the General class exam so I'll probably take it at some point in the future. Then Dave and I can talk to each other without the use of any infrastructure, even though we only live about 30 miles away from each other ;)

John is a guy that I've never met, but Emily met his wife at a yarn store and it came out that both of their husbands are young and have colon cancer. He has a blog which I have been following. He's been dealing with it longer than I have, and his had metastasized to his lungs (and maybe some other stuff as well). I think I will have to do without dairy and start Xeloda eventually because I can't really return to a somewhat "normal" life if I have to spend half of every other Monday getting infusions and then haul a pump around for 2 more days, then go in and get it removed. Unless I take up working on Saturdays, I'll never be able to work full time again.

I wouldn't say that it was particularly painful (other than the last 2 seconds of it) having the stent removed. It was just very uncomfortable and after 10 minutes of it you get all jittery. My urinary tract has returned to normal though.

On Sunday Emily and I walked the #9 Trolley Trail from Catonsville to Ellicott City and ate lunch at the Bean Hollow. Then we went home and both of us didn't feel all that well. She thinks she is sick. I just didn't feel good. Later that day I went out for another bike ride.

As to bike riding, wow, I've lost a lot of muscle. I pretty much lost most of the muscle in my legs and I especially feel it in my quads. On Friday I did about 15 miles and on Sunday about 8. Both times I averaged about 13 MPH, a cadence of 75, and a heart rate of about 150. My average heart rate is about 15 bpm higher than what I used to consider normal. Which is problematic because my max heart rate is about 178, so I don't have all that much wiggle room between maximum exertion and average. Aerobic fitness will decrease average heart rate though, so hopefully in time it goes back down. I also discovered that I just don't have any leg muscle every time I hit a hill. It wasn't so much an issue of being tired as it was just not having the strength to do it. Oh well, just have to stay at it. I remember it wasn't that long ago that I couldn't get up most of the hills around here thanks to my weak Florida legs!

I'm sitting at COHA now getting my infusions. It's a blast. I have all the wood I need, mostly, to make a big workbench. I just haven't bothered to build it yet. I also need to put in some outlets in the basement. I haven't done this yet either. I must have several hundred dollars of stuff just sitting around unused because I never feel like putting in the effort to utilizing it.

Stent removal (a.k.a holy crap)

2009-06-30T10:13:00.002-04:00

Holy crap. That was not as easy as advertised. Next time they can knock me out, thank you very much.

It's out now though, so that's the important part.

It was harder and took a lot longer than they expected to get it out, of course (though it still only took like 20 minutes I think; feels a lot longer when you're laying on the table).

That is all.

Another week gone by

2009-06-28T08:57:00.004-04:00

So it's been nearly a week since the last post. Like I said in the last one, the chemo went better, as in I didn't feel as bad. But I've had some crazy side effects (or just unlucky problems) this week. I couldn't sleep at all on Monday, literally. And I've had some crazy constipation and hemorrhoid-like problems as well. And lots of stomach acid. I have some other prescriptions now that help greatly with the stomach acid and apparently sleeping too. There's this somewhat new drug called Rozarem which is supposedly completely non-addictive (i.e. unlike every other sleeping medication in existence). I took it Tuesday night I think? I slept like a baby, but was totally groggy for basically the whole next day. I haven't needed it again yet though. It's possible the Decadron I get during chemo is what is keeping me up or it could be something else totally unrelated.

I worked out yesterday, first time in quite a while. I was exhausted afterward and took a nap. I mowed the lawn too. Later in the day we trekked down to Alexandria and met up with Pat and Minh Chau. They moved into a new place which we went to go see. It was nice. Their three cats are adorable. I am going to catnap them. We went to old town Alexandria and had a totally surreal experience. I wanted pizza so we found this one pizza place but it didn't look super awesome so we walked like 7 blocks back to where we started and went to an Indian place because naan and curry sounded awesome. So we went in and sat down. And we sat, for a long time. No food ever came. Sometimes we would get a drink refill maybe. After like 40 minutes two plates (there were four of us) were delivered, but no food. So we sat some more. Eventually Minh Chau took charge and we just left after wasting about an hour. There were at least three people who had been there longer than us that also had no food. Their chef must have had a seizure or something, but it would have been nice for them to share that information with us. I was still in a good mood, miraculously, despite being hungry. So we had a good hilarious laugh about the situation. Then I got cranky. We went to Dairy Godmother which is a neat creamery type place in Alexandria (I think that's where we were at least) and I got a shake, but I needed actual food. After that we went to a different Indian place, which is actually on the first floor of the apartment they used to live at. It was excellent. It was apparently Emily's first time ever having Indian food and she liked it as well. I'm pretty sure it was actually good food, but I would have eaten anything by that point in time. It was fun hanging out with Pat and Minh Chau. We really need to do it more often; too bad it's at least a one hour one-way drive :(

Today we might have a BBQ with Trevor.

Tuesday I am having my stent removed. I'm a bit apprehensive about it as there is no anesthesia involved, but I'm told by several doctors who have presumably never had anything 30cm long removed through their urethra that it is not painful and is a routine procedure.

I am looking forward to biking again and hopefully even going for another camp/hike excursion or two before winter sets in again.

Other than that I am planning to have a nice quiet week at work. We get Friday off for the 4th. We might go into DC for the 4th. The fireworks are nice, but that's about it. I just feel like there is something a wee bit special about being in "our nation's capital" for Independence Day.

First treatment with new cocktail

2009-06-22T20:38:00.004-04:00

Today was the first treatment with my new reduced cocktail of drugs. I certainly feel better than I have historically on Mondays and Emily says I look at lot better (I never look in the mirror as I'm generally occupied with finding a bed to sleep in). I was still rather tired. I don't know if it was just expectation of being tired, or what. I don't believe any of the medication I received is supposed to make me sleepy. I only slept for maybe two hours though, so much better than my normal take. I have huge headache right now though. This is probably attributable to my right nostril still being perpetually upset and the gash over my right eyebrow.

Seems like things are going well, then.

The person next to me had their first infusion of IV Iron, and possibly had an allergic reaction to it (this is not a common occurrence). She was all freaking out (pain, trouble breathing, etc.) and the paramedics came and took her away in a stretcher. That was too much excitement for the infusion center! There were a bunch of people there initially as well, not too sure why. They're usually very quiet on Mondays and I get to monopolize their time. I was the only there by the time we left though.

The first episode of Series 13 of Top Gear aired Sunday night and I grabbed it and Emily and I just watched it. Entertaining as usual.

And lastly, here's a picture:

Sham-Wow!
(I've actually never seen that infomercial, but I've seen the guy on the side of a box and this picture mildly reminds me of that.)

I look incredibly pale; but, then again I am pale. Also, this is the pump I keep talking about that I have to carry around with me. And you can see my accesseed port on my left (right of picture). The tiny little infusion cord is probably hard to make out. Also you can see my "sleepy hair cowlick" in the back.

I am not planning to go to work tomorrow, or Wednesday. Though if I feel very good tomorrow I might plop by work for a few hours after I have my pump out on Wendesday, as I will be basically halfway there.

Did a bunch of junk outside

2009-06-21T17:35:00.003-04:00

*phew* I'm pooped out after working outside. After I finally got out of bed around 10:00AM I spent about3 hours working on a programming project (that I'm doing for fun; a budgeting application). That project is coming along very well actually. I can and have already used it to analyze my spending in the way that I want to.

After that I went outside. Got out the weed whacker and trimmed up all the hedges and knocked some crazy weeds in our "no go" areas. After that I got out my new wet/dry shop vac and emptied both Emily and my cars and vacuumed them out. Probably got a few pounds of sand out! They were both pretty dirty. After that I mowed the lawn and now it looks pretty and nice (nicest yard in the neighborhood! We are keeping up with the Jones'). After that I spread some of this "seed" which is actually insecticide. I put it in all the gardens (except Emily's new hill one, because I forgot about it until just now) and all around the base of the house and deck. Hopefully it rains (it has been pretty regularly) and gets it all soaked in and nukes those ants and whatever other baddies are in there. I got it all over me too, I'm sure that's healthy (not that I don't have things more important than that to worry about!).

Then I finally started the job of finishing replacing/burying all of the gutter downspout pipes. I need to dig a 16' x 7" ish sized trench for one. I didn't do that. But I did measure it and cut the huge roll of pipe that's been in my basement for a year down to size and put it out there, above ground. I got to replace some older yucky stuff that way there too. I took the extra pipe I had and put it on the back of the house downspout and ran it a good way down the hill. I doubt I'll ever bury that one, though it sort of annoying to walk over. Maybe someday.

After that I finished it all off by actually attaching a screw/hook to the outside of the deck to properly-ish suspend the defunct telephone wire (I ought to just cut the thing) and our cable modem incoming wire. They've basically been hanging on the ground since the deck went in. Got the screw in, managed to get the wires back up to deck level, attached guy wire to screw, routed the wires under the deck, and properly put a drip loop on each of them prior to the service entrance to the house.

I will relate something that I thought was hilarious. Last time I was at Lowe's in Catonsville here, I was buying a Sqaure D QO series 20 amp GFCI breaker because I am going to be adding some outlets to my basement. Of course this is against the law because I'm not going to pull permits for it, since only real electricians are allowed to do this in Baltimore county. Well, I sure felt good about my knowledge. There were these two guys there, I'll say they were from the country (if you catch my drift). They have a Lowe's guy there, and the Lowe's guy is on the phone (presumably to another Lowe's guy) and they're talking about what the guys have in their hand. They have a 100 amp subpanel breaker box, empty, and some breakers. They had absolutely no idea how to wire it up. And they were installed a subpanel somewhere. They were taking the advice of a Lowe's person on the phone to understand how the grounding, neutral, and hot bus bars worked. Wow. No wonder county codes and code enforcement exists. I'll probably read about the dying a fiery death in their sleep in the not to distant future.

I knocked the crap out of my head when I was in the basement looking at some stuff, the very corner is sort of stupidly laid out with a bunch of house stuff and then the weight machine ("the Borg cube"). I was crouched over trying to look at something for some random reason and as usual came up real fast and went about moving to somewhere else really fast. Well I came up and put my head right into the side of the weight bar. I got a nasty gash on right over my right eyebrow, missed my eye by about an inch. I made quite a racket about it, but Emily didn't know where I was so she was running around outside and what-not trying to find me. It'll be alright though.

Ewww! Blood!

I haven't been terribly hungry the past few days for some reason. I did all that on a granola bar and a muffin (a good Red Canoe muffin!) for breakfast. I finally came in and ate (lunch?) at about 5:30PM, which was the other half of my (actually, Emily's, but she gave it to me) panini from yesterday. Now I'm not hungry again. Not tired either, surprisingly. I need to go shower and get the funk off of me.

Insomniac

2009-06-21T10:16:00.003-04:00

I dunno what it is but I have had quite a bit of trouble sleeping lately. My mind just feels like it's 1000 mph. After all the gadgets and lights go off and I am actually planning on going to sleep, I'm happy if it takes less than half an hour. This happens about every 1/3 days. Sometimes it takes less than an hour and a half, about another 1/3 days. Other days it feels like I will never go to sleep. I'll lay down trying to sleep at about 10:00PM, which is pretty normal for me. I roll and roll and roll until finally looking at the clock and seeing that it's 2:00AM. Usually at this point I just get out of bed and do something for a few hours, then I'm able to sleep.

I have used my oral Ativan prescription twice now for this, once last night. I am a bit leery of doing this, though that is it's purpose. When I get chemo I often can't go to sleep at night when I'm home the next few days, probably because I sleep so much in the day. But I still want to sleep at night, and the Ativan just calms my whirling mind down and I can sleep after that. I don't know if it's the same reason, being at the very tail end of my last treatment. I hope it goes away. I am not enamoured with the idea of getting addicted to something like Ativan or needing permanent sleep aids.

If you need fiber in your diet, Dave pointed me to an awesome thing: Quaker Chewy Oat Granola Bars, Fiber & Omega 3. I have the dark chocolate chunk flavor. One bar has 35% of your fiber for the day, which is honestly more than most people ever get in a day. And they taste great. I have mounds of Benefiber and Metamucil in various forms and I think they both taste just terrible. I need fiber in my diet, so this is great. There's another brand called Fiber Plus right next to these in the breakfast isle, but Dave says he think that the Quaker ones taste better. I also highly recommend them.

Also, Emily just caught some hilarious pictures of the kitty cats going at it:

The prequel...

The execution...

Had a meeting with Dr. Kasamon

2009-06-20T10:04:00.004-04:00

I had a meeting with Dr. Kasamon yesterday, my monthly one. We talked about the plans for chemotherapy, picking fruit from pick-your-own farms, the origin of his last name, and various other things. I happened to mention in passing that I had a blog for my family and he said that he had actually seen it before; he was Googling around for his name, which is very uncommon, and it was in the first couple pages of results. Funny! Also, I'm friends with him now on Facebook.

Anyway, back to what I'm sure you're all curious about: the chemotherapy. As of Monday we are removed the following drugs:

Irinotecan
Emend
Bolus of 5-FU

Irinotecan is the bad stuff, as has previously been mentioned. Emend is an anti-nausea drug I've been getting on top of another one. A bolus of 5-FU means a large amount administered all at once. Dr. Kasamon (and many others) believe it doesn't really have any good anti-cancer fighting value, but is just done because it's always been done that way. Not doing it should help blood counts and maybe some other things too.

I am going to continue to get, for the immediate future at least:

48-hour infusion of 5-FU
Avastin
Leucavorin (folinic acid)
Aloxi
Decadron
Ativan, if I want/need it

Aloxi and Decadron are anti-nausea medication. I'm not sure if I'll really need those either now that I'm off of Irinotecan. But better to ease off than to vomit everywhere I suppose.

For the immediate future I will still have the pump for 48 hours Monday-Wednesday, which is kind of a drag. 5-FU is available orally in a drug called Xeloda (Capecitabine), which I am going to try after a couple of infusions with the above cocktail. So when I'm on that I won't get the 48-hour 5-FU but will continue to go in for infusions of the other stuff (except maybe Aloxi/Decadron/Ativan).

I kind of expected this, but I'm pretty much going to be doing this for the rest of my life. I'm not super excited about that, but I guess given the alternative I'll take the infusions. We didn't get super into details, but I think eventually it might just be the 5-FU, which I can have orally. I'm not sure if I'll be on Avastin forever, which requires an infusion. At least that infusion is only 30 minutes long (and has no real side effects).

Regarding pick your own fruit, Dr. Kasamon said he and his wife enjoy going to Larriland Farms, which is out by the Days End Horse Farm west of here. He also said there's an organic pick-your-own place in Westminster called Baugher's Farm. Emily and I will have to check those out. We have yet to go to any places like that up here (or in Florida, for that matter). Seems like an excellent way to get fresh produce in quantities that we'll actually finish.

It's a yucky day outside so far. Right now Emily is making cheesecake brownies, which is super exciting. We're not sure what we're going to do today. We both want to eat at the Red Canoe, though we're not sure we'll get out there. I might do something around the house, don't know what. (We had some sugar ants get into our kitchen yesterday, that was fun. I think we'll be able to keep them relatively controlled. Apparently nearly everybody gets ants in their house in the summer up here.) Also Kevin (from work) is playing at Leadbetter's in Fell's Point tonight; we might go to that. Or maybe do nothing! Oh yeah, there's always test driving cars, which I haven't done any more of. I'm not in the mood for it right now though.

Update 2009-06-20 19:26:

We went to Red Canoe for lunch. It was excellent, though I was strangely not all that hungry. I had a vegetarian chili soup which was excellent. Emily had a gazpacho soup which I think she also very much enjoyed. And we split a panini which neither of us nearly finished. We also got blue corn chips along with it and we each had a medium mocha. Then we got two muffins to go. We were going to get some for Raquel (Todd's wife) because she once mentioned to me that she wanted to go there, and it's not really very close to their house. But I didn't (and still don't) know any of Todd's phone numbers miraculously, so I couldn't call and make sure that we could drop them by. I also don't know exactly where they live, which is also problematic. Oh well, we'll have to go back after I get that sorted out.

Here are some pictures to make you wish you had come, too:

Mocha mustache

Gazpacho and panini

Chili and panini

Panini close up, smiling at me

Aloof kitty cat who did not want to be my friend

We were super tired for some reason afterwards. We both ended up passing out asleep for a few hours. Ugh. It was great, but I really didn't need it. Emily hates naps, too.

The venerable Honda Fit

2009-06-16T22:01:00.003-04:00

First thing's first: I felt awful yesterday, I couldn't get any sleep at all Sunday night. Don't know what the reason was. I had a hard time falling asleep last night too and finally resorted to some Ativan. Hopefully I don't feel the need for that tonight (I've felt pretty good all day).

Didn't get what I was planning/hoping to do done at work because I got sidetracked on another problem that turned out to a lot more frustrating than I had initially suspected. I think I mostly solved it by the end of the day though, luckily. Hopefully on to my ever growing to-do list tomorrow.

Tonight Emily and I test drove a Honda Fit. She was grumpy because she had a bad day and I said I would be home early so we could eat and test drive and get home at a good hour, and I was not home early. We went anyway though. Anyway, it was at O'Donnell Honda on Rt. 40 in Ellicott City. The salesman was super friendly. I only had to mention once that I wasn't going to be buying a car that day and that I was already fairly familiar with the Fit. He didn't persist with anything after that, and actually just gave me the keys and told me to have a good time, basically. He didn't come along for the ride.

Anyway, the car certainly didn't have the same build quality as the VW, but it costs $7,000 less, so who would expect it to? It was quieter than my Saturn, and the steering was more responsive (though given my driving style from the Saturn, Emily said it was a bit "twitchy" as I was all over the place). I did get it settled down a bit after a few miles though. The car is very utilitarian too. It can hold 56 cubic feet of cargo, and the rear seats are engineered very cleverly to both fold flat with no effort, and the front of the seats can come up, leaving a deep cavity to fit tall things (i.e. a bike or two). Very very clever.

I'm still going to test drive a Mazda 3 and a VW GTI, which are both priced pretty similarly (i.e. $3,000+ more than the Fit) and are more sporty than the Fit. But that Fit can give a lot of stuff a run for the money. Very well priced, excellent gas mileage, and excellent utility.

Sigh, the choices are so tough!

I test drove a car

2009-06-11T21:02:00.003-04:00

So Emily and I just finished eating dinner after an outing to test drive a Volkswagen Jetta SportWagen TDI.

Wow, it was a nice car. I totally did in my car search by driving such a nice car this early on. Now nothing else is going to compare, methinks.

I wanted to test drive the 2-door Rabbit as well, but they did not have any. Apparently they haven't even been able to buy them from VW for most of the year.

The SportWagen looks amazing (probably the nicest looking hatchback/wagon I've seen) and definitely feels like it has quite a bit of build quality to it. Certainly felt like a safe and well put together vehicle.

The "TDI" portion basically means it's a diesel engine. They hadn't been able to sell diesels in the U.S. since 2006 when some sort of emissions laws changed. So those Germans went back to the hinterland and toiled away until they came up with an even better engine that meets all 50 states' emissions requirements, and gets >40 miles per gallon highway moving a big wagon like that.

The engine has a lot of torque, and certainly more horsepower than my Saturn. I turned out into traffic for the first time and startled myself with the power. It was very nice. It was also very quiet and controlled on the interstate at 70MPH, which was also a very nice change of circumstance from my loud old Saturn ;)

I drove the "automated manual", which is Volkswagen's DSG manual transmission with "tiptronic" shifting, which is some fancy Porsche automatic transmission. Basically it's an extremely clever transmission system which has the ability to just shift automatically, but you can put it in manual override where you control the gear changes, though without a clutch (the cluch is automated)... so it's kind of like an F1 "flappy paddle" transmission, except you use the gear shifter to do the shifts rather than paddles on the steering wheel.

It was nice, but for $1,100 I think I could learn to drive a manual. Especially if we follow through on plans to move to the U.K.; they just don't seem to drive automatics over there on that other continent. So knowing how to drive a manual will be a very valuable skill.

The car I drove today had a sticker price of like $25,600... which I think is frankly crazy. And I'm still considering purchasing it. They are very hard to come by. They had two for sale, one manual and the one I drove. He said they are getting 4 more, he thinks, in the next couple of months and that's going to be it for the 2009 models. I liked the one I drove today, but I just wish it were a manual. The manual they have is an ugly black color (it has some chrome trim, which the grey one I drove had too, but it just looked gaudy and too contrasting on the black). Unfortunately with basically all of the cars on my list, beggars can't be choosers. They all seem to be in limited supply, this one just especially so.

Emily really liked it too. Looks like we'll have to do some sleeping on this one.

Feeling pretty good at the moment

2009-06-11T14:51:00.004-04:00

I don't want to jinx it, but I'm feeling pretty good right now considering it's a Thursday. I felt alright this morning, even considered going to work, but I had this residual stomach uncertainty and some mild diarrhea still. Then at about 10:30 I decided I was tired and took a nap for a couple of hours. That seems to have done me a world of good. I'm hoping to get into to work for maybe even 6 hours tomorrow!

Also in the good news category (I think it was Laurie who mentioned these) are that I have gained weight (I think I weigh about 156 now). Also, my stent is being removed on June 30th.

Indeed, I am not going to be getting Irinotecan (Camptosar) anymore, which is supposedly the worst of the drugs I'm on. I still get to go in for some lengthy-ish injections though (still getting Avastin, Leucovorin, and 5-FU through IV). That also means I get to have the pump for 48 hours still, which is a real drag (hauling it around, not being able to shower... especially in the summer, doesn't help my acne problem). I'm going to stick with this for a couple of doses and see how the side effects are. Then I plan to try Xeloda, which is an oral form of 5-FU, so I don't have to have the 48-hour pump. It has different side effects, so I'll see how I feel about those. Then whichever is better is what I'll stick with.

I'm on a new car kick (again). Periodically this comes back and goes away as quickly as it came in. My shortlist now appears to be something like:

Honda Fit
Subaru Outback
Volkswagen Rabbit 2-door S
Volkswagen Jetta SportWagen TDI
Mazda Mazda3

Unfortunately all of those except the Fit (and maybe the Rabbit) are way over the amount I initially wanted to spend. The SportWagen TDI looks super duper sweet (and expensive), but you get a $1300 tax rebate because it's a clean diesel, on top of the sales tax rebate for the purchase of a new car. It might make it palatable to spend $24,000 on a car. That sounds like crazy talk. Maybe I still have too many drugs going through me. I want to go test drive one, but the closest place is a whole 10 miles away in Owings Mills and I don't want to drive there. There's a VW dealer literally like 2 miles away, but the TDIs are hard to come by (and they don't have any). But they're also a Mazda and Subaru dealer, which is convenient for other reasons.

Also, I have been playing around with my VoIP server (internet phone) and managed to get a free phone number that if you dial, will ring for 12 seconds, and shunt straight to a voicemail which then gets emailed to me. I can give this number to annoying car salesmen and then never be bothered with a ringing phone. Excellent. Setting up Voicemail was much easier than I expected, given the effort I've had to expend getting the rest of it working. I still have yet to bail on my $50/month cell phone plan and go pre-paid, which was the whole idea from the beginning. There is yet more loose talk afoot of having a big family plan. I doubt it will ever happen, and I'll just continue paying $50 a month ;)

Places we have eaten at in/around Chicago and enjoyed

2009-06-10T18:11:00.002-04:00

Orange (excellent breakfast)
Southport Grocery (not really a grocery store but kind of, excellent breakfast)
Fox & Obel (grocery store with good food and a deli)
Opart Thai
Giordano's Pizza (for some "authentic" Chicago-style pizza)

Places we have eaten at in/around Florida and enjoyed

2009-06-10T11:15:00.003-04:00

Publix, all of Florida

Hogan's Heros, Gainesville, FL (best hot pressed subs I've ever had)
Leonardo's Pizza by the Slice, Gainesville, FL (great pizza and rolls, and tattoos)
Mr. Han's, Gainesville, FL (Chinese)
Backyard BBQ, Newberry, FL
Mildred's, Gainesville, FL (chocolate bombe cake)

Bagelicious, St. Augustine, FL
Gypsy Cab Company, St. Augustine, FL
Fusion Point, St. Augustine, FL (awesome sushi)

Places only Emily has eaten at but swears are good:

Cafe Eleven, St. Augustine, FL
The Columbia, St. Augustine, FL
Lemongrass, Jacksonville, FL
Shmagel's Bagels, St. Augustine, FL
Spanish Bakery, St. Augustine, FL
Manatee Cafe, St. Augustine, FL

Places Emily and I want to eat at in/around Maryland but haven't gotten around to yet

2009-06-10T11:01:00.003-04:00

Hagan's Tavern, Middletown, MD
Clementine, Lauraville, MD
That's Amore, Columbia, MD (Italian)
Ze Mean Bean, Fells Point, MD
Grace Garden Chinese, Odenton, MD
Kabob place over by Arundel Mills
Akbar's, Columbia, MD (Indian)
Stella Notte, Ellicott City, MD (Italian)
Eggspectation, Columbia, MD
Spicy Garden, Catonsville, MD (Indian)
Baldwin Station, Sykesville, MD
Thai Heaven, Catonsville, MD

Places we have eaten at in/around Maryland and enjoyed

2009-06-10T10:59:00.004-04:00

Amish Market, Annapolis, MD (soft pretzels and shakes!)
Puffs 'n Pastries, Hampden, MD
Lemongrass, Annapolis, MD (Thai)
Magruder's Market, Washington, DC (overstuffed sandwiches after seeing the National Zoo)
Chef Geoff's Downtown, Washington, DC
Guiseppe's, Frostburg, MD (Italian)
Pitango Gelato, Baltimore, MD
Opie's soft serve ice cream, Catonsville, MD
Little Spice, Hanover, MD (Thai)
Atwater's Bakery, Belvedere Square, Balitmore, MD (soups and sandwiches)
Dogwood, Hampden, MD
Scittino's Italian Market, Catonsville, MD
The Bean Hollow, Ellicott City, MD
The Red Canoe, Lauraville, MD (all good food, paninis)

Oh no, wind!

2009-06-09T18:27:00.002-04:00

Maryland is incapable of coping with anything but perfect weather.

Some wind blew through and suddenly we find ourselves without power. We're hoping the fridge doesn't warm up too much. That's what you get when you have a cheap fridge, I'm sure it's not as insulated a fancy-pants one.

But on the up side my battery back up UPS has been powering the cable modem and wireless access point for the last hour or so, which I must say is amazing since I though the battery was going on it.

Rather than cook in dim light and light our stove with a match, we're going to Panera.

I expect to reorganize some things on my blog to showcase more stuff about food. We love food. More on that later.

Oh, and chemotherapy really sucks. It's just hard to describe... I just feel... *meh*. Not sick or anything though so I will keep my complaints to a minimum.

Two posts in one day!

2009-06-06T18:19:00.004-04:00

Two posts in one day! Oh my.

I forgot to mention a fact that everyone in my family presumably knows: Emily and I are coming back to Florida to visit for a whole week in August (August 8th through the 16th). My family has rented a habitation (I wrote 'cabin' and Emily corrected me and said it was a 'condo', so I will use a generically applicable term) on the beach in St. Augustine for part of that. We're going to have some sort of happy-fest to belatedly celebrate our marriage (and get the families to meet) and my presumed good-ish health. We're going to stuff ourselves silly with good food (not that this is an abnormal thing for us).

We're back from the party in PA. It was fun. I really like being in rural areas, it's so bucolic and pretty.

Maryland is in fact growing on me. It may be that nobody can drive when it isn't amazingly nice outside, and it may be one of the most expensive places to live in the country, but it does have actual seasons which I can coming to like (except winter) and quite a bit to do within a 1.5 hour drive of home. Right now it's sunny and like 75 degrees outside and absolutely wonderful.

Here are some more pictures:

View up from our hammock

This is me writing this blog post

It's been a while

2009-06-06T12:18:00.005-04:00

It's been a while since I made a blog post. Not a whole lot has happened.

Somebody at work mentioned that they once had an intestinal blockage and it hurt like crap too, so my crazy abdominal pain could have been some form of constipation. That was something the folks at the hospital suggested. I've gotten pretty good at figuring out when I need to take what medication to handle nausea/constipation/diarrhea so I was a bit doubtful as I was pretty sure I was still in the "OK" zone at the time, but maybe. It hasn't come back so I don't care anymore really.

This was a pretty normal week of work. There was a conference this week and some visiting guys who we spent quite a bit of time talking to. I really didn't accomplish much of anything all week long, but I was physically present at the minimum. It was really hard to get things rolling again, having not been in to the office for three weeks. I never really did, but perhaps a little.

Friday night Emily and I went into DC to the Warner Theater to see PJ Harvey and John Parish in concert. We had never been to the Warner Theater, and I had never really listened to PJ Harvey (though Emily is extremely fond of her music). The venue was amazingly nice, and the concert was a pretty good as well, though a bit loud (as all music is nowadays for some reason) and I didn't really care for the way the music was mixed. I think it was largely on purpose to fit the style of music, but everything was very "harsh". The drummer was a basher, and the bass was mixed with absolutely no treble. Still though, there was a good bit of sonic diversity and I enjoyed it. My favorite song of the night was actually the first encore and was a John Parish song, called False Fire. That's probably because it was basically a two-step and I seem to love all two-steps. Also I rather enjoyed a song called "16 15 14".

Before the concert we ate at Chef Geoff's Downtown, which was recommended by Dave at work. It was literally across the street from the theater, which was pretty cool. It was a very good recommendation. The food was absolutely excellent, and very well proportioned too. I was glad to get a meal that I could actually finish. And it was prepared extremely well with what was surely extremely fresh ingredients. I had a Madras curry chicken which had some neat couscous contraption next to it. Emily had a salmon with a Caribbean-style salsa and sweet potato fries. It was all good.

Today we are going up to PA to visit one of Emily's coworkers for a party. It should be entertaining. We're going to stop at REI on the way up and waste some more money ;) I want some more "base layer" undershirts. I have one white one from them and it is amazingly comfortable in the summer sun.

It's been raining all week pretty much, so we haven't spent too much time on our new deck. But last weekend we did grill out on Sunday with Trevor. And we got a hammock which is up there now. I've fallen asleep in it once and Emily has used it a couple of times too. This weekend is supposed to be nice and sunny, so we hope to get some more hammock time in tomorrow.

Here are some deck pictures:

As you can see we have a grill already! (We got it the day after it was finished). No pictures of the hammock, but it's nice. Also, you almost can't tell we live in a city with all those trees around.

What a day

2009-05-28T23:14:00.004-04:00

I felt pretty good this morning. The deck guys came out and starting building our deck too, which was super exciting! It's basically done except for the railings and the final footing inspection. They think they'll have it finished by tomorrow. It looks very nice thus far.

I went to get my port disconnected and return my portable pump at about 11:40. I was very much looking forward to a good turkey sub from Harris Teeter after this when I realized I left my wallet at home. Luckily I easily found $10 in quarters in my change bin in the car, so I paid in quarters.

While I was on my way to get the sub I noticed a little abdominal pain on my right side, right under the ribcage. I was hoping it was because I was hungry. I eventually got my sandwich and ate half of it, but the pain was worse.

By the time I made it home it was pretty excruciating. I decided that I had to go to the ER because I was afraid that I had appendicitis. I just barely made it, I should have called an ambulance. It was the most indescribable pain I've ever had. I called Emily and she met me at the ER. It took about 1.5 hours I think to get me into the back, get an IV started (for some reason they don't have the junk in the ER to use my port) and get me some pain killers (Delotid!). I just can't emphasize enough how painful this was.

Well eventually they got around to doing a CT with contrast to see if my appendix had exploded, which it hadn't. In fact, they have absolutely no explanation as to what the pain was. They said all looked well. Indeed, the pain has since passed. They basically just said go home, here's some painkillers, and here's some pepcid. Go see Dr. Somerville, too (with no explanation as to why). Annoyingly because Dr. Kasamon is not affiliated with St. Agnes they basically can't/won't talk to him.

I did get to not have surgery, which is great news. I wasn't looking forward to having a surgery, on top of the possible complications of it from being on Avastin (it affects the healing process of blood vessels).

I think next time something like this happens I'm going to go to Sinnai (which Dr. Kasamon is also not affiliated with, unfortunately) because it's closer and maybe slightly more competent than St. Agnes. Or if it's not too bad I can make it to Howard County or BWMC where Kasamon is in the loop.

Anyway, things seem to be okay now but good god if that's what a burst appendix feels like I hope I never have one.

And we'll have a deck tomorrow.

It's been a mixed day. Hah.

7/8 down, maybe?

2009-05-27T09:50:00.012-04:00

Dr. Kasamon forwarded me an email from Dr. Diaz where Dr. Diaz recommends 4 total cycles (which is 8 treatments) followed by maintenance of 5-FU and Avastin. I have no idea how long that lasts. Maybe forever. In my initial contact with Dr. Diaz I got the impression he prefers a whole year worth of treatment (including maintenance) before you can go on "holidays" of an indeterminate period of time. There's still a good bit of details to be worked out, it seems.

I'm in bed recovering from the chemo yesterday. It's not too bad this time, though I have a good headache, my stomach hurts, and I'm decently tired.

I just ordered a miter saw and circular saw from Amazon. There's a $20 rebate on each of them until the end of the month, sweet! That means I picked them both up for about $160 I think. I also ordered oil and air filters for Emily and my cars. What does Amazon not sell nowadays?

Emily and I had a very good spontaneous weekend. We made it out for the train ride, which was pretty entertaining. I have never been out that far west before. We got off in Frostburg and had a 1.5 hour layover where we walked up and down the rather short main street, then we ate/drank at a place called Mountain City Coffee House. The coffee was very good. I also had a hot panini consisting of tomato, cheese, and pesto I think. It was also good. Back on the train we went back to Cumberland.

It was supposed to be rainy all weekend but the weather held out miraculously for us. After we got back to Cumberland it was just starting to rain/sprinkle. We randomly called a bed and breakfast in Cumberland, the Bruce House Inn, and asked if they happened to have a room that night. Miraculously they did. They were booked up solid, but an old couple had to bail out a day early and they had a room (in fact, the room we would have wanted looking online) available. Very nice place. Though for some strange reason they had hardwood in the bathroom with a claw-foot tub that spewed water everywhere when you showered. Anyway, we then took a nap for a couple of hours.

After waking up we went to Rocky Gap State Park in search of some supposed bluegrass music being played out there. We never did find it. It was sprinkling a little bit at first, but we never saw any hint of people coming out. Oh well. Instead I just kept driving on a road and we found ourselves in PA and eventually in Buchannon State Forest, which was gorgeous. Then we went offroading down some forest fireroads that seemed okay to drive on. Coming up in this beautiful mountain gap before the forest I wanted a picture of it. But there wasn't anywhere good to get a picture. I jokingly commented that I wanted to go to this antenna field at the top of the mountain I could see. Well, after a couple of long fireroads low and behold I dead-ended at the antenna field. There was no good access to an edge to take a picture though.

Then we drove back into MD and went back out to Frostburg and ate at Guiseppe's Italian restaurant. Emily and I split an apettizer that was basically a caprese salad (mozzarella, tomato slices, olive oil, basil, oregano, etc.) and very good. We also split a pasta primavera with chicken, which was also very good (fresh veggies). Emily had eaten there a couple of times when she worked for DNR and drove all over the state. It was a good pick. Back to the BnB for some much needed rest. One thing I will say about Cumberland, it's clearly an old town that didn't plan for traffic. They have closed off a few blocks of the main thoroughfare and paved it over in European style as a pedestrian plaza with shops and stuff. That's fine and dandy except every road is one-way. It took about 30 minutes once we were back into Cumberland to finally correctly navigate the 5 blocks to the BnB. Luckily tensions didn't flare too badly ;)

The next day we were again spontaneous and decided to continue west basically to the edge of the state and go to Swallow Falls State Park. There's a 53 foot waterfall in this park, bigger than I have ever seen. Emily is not impressed by it though. It's also in the last remaining stead of Hemlock trees in the state of Maryland, 40-ish acres worth. We walked basically the whole trail. It was very nice and refreshing. Most of the trail is against these strange rocky outcrops on one side (it looks like it was blasted, but it could have been natural) and the other side is a river and falls. Being in a forest with water makes the air so nice.

After that we began the 3.5 hour journey home. (Maryland's not a very big state!). We stopped at the at the Lakeside Creamery right on Deep Creek (the largest body of water in Maryland, and like all bodies of water in Maryland man-made by a dam). I had a disgusting amount of "cinnamon bun" ice cream in a waffle cone, which was great. Then we continued our journey home.

Right near the intersection of I-68 and I-70 is a place called Sideling Hill, which is this huge gap in a mountain range with I-68 running through it. You can walk up the side to an observation deck and see all the layers of rock and the evidence of primordial streams and stuff. Pretty neat. Though I never did figure out if it was man made or not. Onward home...

About 10 miles into I-70 we hit traffic. I think we averaged about 15MPH for the next 50 or 60 miles, but eventually made it out barreled home. It seemed to clear up at about Hagerstown for some reason.

Once we finally got close to back, we took another detour and went to Columbia to eat some Chipotle fajita burritos. Mmmm, so worth it.

Now for some pictures Emily took and prepared for me (in mostly chronological order):

You can see I'm totally excited about our train ride!

These adorable kitty cats were in the window of a liquor store in Frostburg.

This is me being a typical American, sipping my mocha and playing on my new fancy-pants cell phone.

This was taken somewhere on our meandering drive into PA. I think it's on the MD side though. The haziness was the neatest part I thought.

This "stair case" was in Swallow Falls. It looks man-made, but maybe not!

This is a little falls (I think maybe called Livingston Falls) in Swallow Falls State Park. You could get right up to it and it was nicely sized so Emily got some good pictures.

This is a big old, dead, hollowed out tree. I'm stuck in it! Eek!

Excellent news

2009-05-24T06:38:00.004-04:00

I had my mid-term PET/CT results on Friday. It showed a complete response to chemotherapy, meaning that they see no traces at all of disease on the scan. There is no noticeable lymph adenopathy or anything else. This is, literally, the best news I could have possibly received. It doesn't mean that I don't still have cancer. But it is still the best news one can get.

There is talk of stopping chemotherapy early and moving me to "maintenance". What this really means is just stopping Irinotecan and only doing 5-FU and possibly Avastin. 5-FU is available orally in a brand-name drug called Xeloda. That is nice because 5-FU is the injection that requires the 48 hour pump. I might stay on Avastin as well which will require infusions still, but that's okay. Supposedly Irinotecan is the big side effect producer (except Avastin causes me nose bleeds and a bit of GI bleeding too). So overall quality of life should improve.

Dr. Kasamon is going to consult with Dr. Diaz and Johns Hopkins (whom I saw at the beginning of this ) and Dr. Van Echo at his practice (another well regarding colorectal cancer guy). They will hatch some plan as to what they think the best course of action is. There isn't a whole lot of clinical evidence that clearly shows what one should do in a situation like this. It's not often to find someone have a complete response half way through, apparently. I like that Dr. Kasamon is going to do that of his own accord and I think that with the experience between the three of them they will make the right decision, whatever that may be.

I also talked to Dr. Fenig, my urologist, on Thursday. He thinks that I should have my stent removed in the near future (like whenever we can get the appointment scheduled). He saw the PET/CT as well and thinks the best thing is to take it out and see if anything bad happens with my kidney (which hopefully there won't be). So that's more good news.

Overall this was a good week for me.

Also Emily and I are being spontaneous today. Last night at 11:00PM we decided we were going to go out to Cumberland (2.5 hours west in very Western Maryland) and take a historic stream train to Frostburg and back. Then we'll probably spend the night in Cumberland or the surrounding area. The train leaves at 11:30AM today, which means we need to be out of here by 8:30AM. So I'm going to stop typing and get a move on.

Error Correcting Codes

2009-05-18T19:07:00.004-04:00

First, I have six treatments to go; 12 in total.

Since I'm just laying in bed right now with nothing else to do I will do my best to explain what an error correcting code is. There is a decent Wikipedia article on Forward Error Correction, which is a place where ECC find their application. You would be amazed how many things in your life utilize ECC (hard drives in computers, portable flash/thumb drives, CDs, DVDs, everything you do on the Internet, etc.). It is an aspect of communications systems. Basically, in a communication system, you can never really be sure that the person you're talking to heard you right... and if you're listening, you can't be sure that what you heard was right.

Human speech is a sort of example of a communication system but it's hard to use as a good example because it is highly redundant to begin with (you don't really need to hear all of what someone says to know what they're talking about). And our brains are exceptional computers and we have a hard time abstracting the process of discerning what it is that someone said. So to use speech in my next example, I will contrive an example that doesn't use English words.

Imagine that there are two people in a crowded food court at a mall and they are separated by some distance. One of them knows the winning lottery numbers and needs to tell the other so he can buy a ticket. You really want to be pretty certain you heard the numbers right. One option is to have the sender scream loudly (which in actual terms means increasing the power of the transmission). Say he's got a sore throat though so he can only get so loud (which is analagous to the very real scenario of something like a cell phone, where it can only be so powerful given that it's a handheld device running on a small battery). You can hear him but not great. Another option is to have him repeat each number twice. If you hear two different numbers, you know there's been a mistake. You don't which number is correct though. You can yell back and ask him to repeat it (which is a form of communications protocol, known as a negative acknowledgement or NACK). But that takes time to do, and maybe you've lost your voice or something so you can't do it to begin with (a simplex or one-way communications channel). The sender could say each number three times, and you could take a majority vote of the three copies you received. This way you can detect and correct one error. (actually the "detection" part might be more, but it's complicated because my example isn't bits, it's words).

The fact that you send the "data" three times and take a majority vote at the receiver is a rudimentary and highly suboptimal example of an error correcting code. There are many thousands of pages that have been written about the various clever ways one can mathematically encode data such that errors can be detected and in some cases corrected in a communication system. Pretty much all modern forms of communication would fall apart without error correcting codes. So they're pretty interesting and useful.

Forward error correction is a way of preemptively putting information in that will enable the receiver to detect and possibly correct errors. If you can't detect that an error has likely occurred, you wouldn't know to ask for that piece of information again. And if you can correct it without any intervention from the sender, you don't have to go through the process of asking for the piece again and verifying it was correct. There are many applications where the penalty for asking for information again is great and you would really prefer that it all just get there right the first time.

A good real life example of this is geosynchronous satellites. That is, satellites whose orbit matches that of the earth (they are always appear to be over the same spot on the earth, not orbiting around it since they have an orbit that matches that of the earth). The physics of it means that all such satellites are about 22,200 miles above the earth. If you are trying to communicate over a satellite channel, the speed of light becomes annoying. The fastest you can possibly hope to get data to the satellite is about 0.12 seconds (thanks to the speed of light). Now the satellite has to beam it back down to earth as presumably you are not talking to an astronaut on said satellite. That takes another 0.12 seconds. So to send anything, it takes 0.24 seconds for the receiver to receive it. So you say "Hi", it takes him 0.3 seconds to receive it. He says "Hey there to you too", and it takes another 0.24 seconds for the "Hey" to make it back to you. You can imagine it is very annoying to have a 0.5 second delay in your conversation. It will be very awkward and you'll be asking each other to repeat things and stopping in the middle because you realize you're both talking at the same time. It's even worse when you're dealing with digital data. If you send one letter at a time, and the receiver can't correct an error, he has to ask for a retransmit, meaning it will take 0.72 seconds just to get the second copy (0.24 to send/receive the letter, 0.24 for the receiver to transmit a NACK and for the transmitter to receive said NACK, 0.24 for the sender to send the letter again). You can see that the penalty for failure adds up quick. You want it right the first time.

Another weekend gone by

2009-05-17T18:28:00.002-04:00

So another weekend has come and gone. I just finished mowing the lawn, and hand clipping all the tall blades of grass since our old-fashioned push mower can't mow things that are too tall.

Instead of getting constipated from the chemo like normal, this time I had diarrhea. That wasn't any fun. Immodium seems to be taking care of it decently well though. I also have all sorts of weird bleeding problems, presumably from the Avastin. The doctors are aware of it though and well, it's just too bad because that's a side effect of treatment. It's not bad enough to alter it yet.

This week I'm going to a course taught by Todd Moon, author of an excellent book on Error Correcting Codes. This means I won't be going into the office at all, and it also means I have to get up early (at least earlier than normal for me). I think the class will be excellent and it's been a while since I've got my learn on, so I think it will be worth it. It's on an inconvenient off week for me though, since I have three doctors appointments this week. So I'll be happy if I can make 30/40 hours of the class.

It's been a pretty lazy weekend. Emily and I went and test drove the Nissan Cube (again, for me at least), then we went to the Stone Store and looked at fancy rocks, then we met Trevor in old-town Savage to eat at Ma's Kettle. Ma's Kettle was a cute quaint homecookin' BBQ place. We were going to go test drive a Honda Fit, but I felt tired so we didn't do that. Didn't feel good today, so we didn't do it again. Some day though.

Ready for the disconnect

2009-05-13T10:04:00.004-04:00

My pump should start to yell at me in about an hour and then at about 1:15 or so I imagine it will be empty. So I'm going to head out later and get disconnected! I'm going to treat myself to a turkey sandwich. I can't decide whether I want Quizno's or Harris Teeter. Quizno's is good because it's hot and I like the sauce they use on the Paremesan Turkey or whatever it is that I always order. But Harris Teeter has better bread and meat, I think. I wonder if they can shove the sub in a sandwhich press or something? Hah.

Anyway, regarding ODB-II readers: if you take your car to Auto-Zone I've heard that they will read the code from your car for free and provide you a printout of what it means and what you might need to fix it. The ODB-II readers are really only useful for a select number of things. Emily's car was having all sorts of poor performance issues, and it even totally stalled out once or twice. Finally, whatever it was caused the ECM to record a fault that I could read. It was an Idle Air Control Valve failure. A new IACV was like $160, but I researched some and figured out I could just remove it and clean it out with some throttle body cleaner and it would probably be fine, which it was. So that right there paid for the reader in and of itself. If I can fix this O2 thing, even better. But I guess you have to want to fiddle with repairs yourself. If I had a new car I wouldn't bother, but anything more than 5 years old, I bet it's probably worth it (like your Nissan SUV, John!).

Also, on Sunday we finally put together and stained this thing we bought from Ikea to use as a shoe chest. We had (have) this cheap metal thing that we had a million shoes piled on, and they were always falling off and stuff. We bought this thing from Ikea like 3 months ago and it's just been sitting there. So I said I was going to put it together and use it unstained if we didn't stain it this weekend, which we did. Turns out putting it together was far worse than I thought. We've bought lots of Ikea furniture, but this one was the worst. The instructions were absolutely awful, and the provided hardware for keeping it together wasn't cutting it. I ended up using about 8 wood screws to keep it together. I almost destroyed it, I got so angry trying to get it and keep it together. Finally I did though and the staining began. I have never stained anything before. It was pretty fun, though I didn't realize I should use a rag to clean up the excess stain, so it doesn't look as good as it might otherwise. But not too bad. The stain we picked fit in very well with the other stuff in our living room.

Also, Square D QO series breakers are really expensive. They have that market cornered. A 15A combination AFCI is like $40. I saw a 20A GFCI breaker that was like $55. I can buy an outlet for $15. Why is the breaker so much more? Either way I'm going to be getting some because it's more convenient.

Sitting in bed after 6/12

2009-05-12T09:20:00.003-04:00

Yesterday was treatment 6/12. That's the halfway point. I'm looking forward to the end. I slept more much of the day yesterday, but had an awful night's sleep. I'm not sure I ever really went to sleep. No specific complaints though, I just feel like shit. Hopefully I rebound a little faster this time than last.

We had an eventful weekend of working in the yard. Emily was very productive, as you can see at her blog. I mowed the yard finally and sowed some grass seed in a bare spot. I also put some retaining wall bricks in as a "temporary" measure since Emily thought they would look dumb. Now that they're in there I think her mind is changing somewhat, but I said we'd go check out the Stone Store one of these days and make sure that there isn't something she would more prefer to have there. We definitely need some nice thick brick edging around the garden though, because the reclaimed rocks from the ground don't do much of a job keeping out all this crazy creeping grass.

This morning I made a spreadsheet of Google docs of all the cars I would consider purchasing. It's basically every foreign-made hatchback there is, as far as I can tell. There aren't very many US made hatchbacks and the ones that do exist I'm not interested in. You can view the spreadsheet (read only) here. I'm pretty sure that after I finish all this chemo in late August I'm going to go buy a new car in September or October (assuming I get at least a temporary clean bill of health). My car's "Check Engine" light came on Sunday night on the way to get some Thai Food from Little Spice, which I would like to add is a very cozy place with excellent food (also as a side note, Google Map's directions were completely wrong). Anyway, I happen to have an ODB-II scanner so I could read why it came on. P0133 = Slow Response from Front Oxygen Sensor. Some research shows me that this is either a failing oxygen sensor or an exhaust leak somewhere. The recommend change interval on O2 sensors is 100,000 miles and I've got about 125,000. It's only $70 to buy a drop in replacement O2 sensor, so if the light comes back I'll do that first (I can clear the light too with the reader). I didn't realize at the time that I bought the reader that it wouldn't do real-time data acqisition (like this one), which would be nice because I could tell right away if the O2 sensor was in fact bad. Maybe I'll craigslist the one I have and upgrade. Though it seems a little silly given that I've used it about 4 times in 2 years now.

Weekend over

2009-05-03T20:54:00.003-04:00

Emily's mom and sister went home today. It was fun seeing them. Emily's mom has an amazing amount of energy. I have no idea where it comes from. She must have some small scale fusion reactor or something inside of her.

I have been really really tired after this treatment. I mentioned this in the last post, but it has persisted up to today. I did go out most days with Emily and family, but it's not like I was doing all that much. I've taken a multi-hour nap I think every day so far.

I'm going to work tomorrow, we'll see how long I stay. I'll be happy with half a day at this point I think. Maybe I'll bring a pillow and blanket and go find a spot behind some computer racks to take a nap or something. I'm usually feeling pretty chipper after I get some more rest.

I never did call that guy about a miter saw, but I do need to get one because I can't put up that fluorescent light until I cut from 2x4s to mount it to the ceiling joists. I also want to trace some electrical circuits, but I'm not clear on how to do it without leaving the breakers on. I'm not all about electrocuting myself, but I can't see how you can trace the way a circuit is wired if there isn't any voltage on it. I suppose I could disconnect the breaker, sever the circuits and connect 9V batteries or something to them. But that's a lot of work! I'd rather just be "careful" and try not to electrocute myself. I need to make another trip to Lowe's to spend more money on random electrical doodads too. You can never have too many doodads.

Status of #5

2009-04-28T21:28:00.002-04:00

It wasn't a whole lot of fun. I was rather tired and just didn't feel well at all. That's to be expected though.

I managed to get out bed today and do a few things around the house.

Tomorrow Emily's mother and sister, Erin, fly in for the Maryland Sheep and Wool Festival. Emily has a big itinerary planned for them, hopefully I am up for participating in much of it.

I also might go buy a DeWalt 12" compound miter saw from a guy on Craigslist tomorrow. I meant to call him today, but it just didn't happen. I want a sliding one, but I'll survive with the sliding bit I'm pretty sure.

I called the deck guy today and left a message, haven't heard back. I will try again tomorrow.

Weekend before #5

2009-04-26T20:27:00.004-04:00

This weekend was pretty eventful. I never left the house on Saturday but I spent essentially the entire day putting together a new computer. It's for upstairs in our bedroom so we can watch various things. Not sure how much we'll be doing it in the summer, but in the winter it's sure nice to be snuggly under the covers when vegging out. It has a TV tuner and I'm using some software called MythTV which is essentially an open source "TiVo". As is usually the case with open source software, it took all day long to get it remotely working. It was mostly working by the end of the day though so that was somewhat satisfying. I also reformatted my netbook with Ubuntu Netbook Remix 9.04, a version of Linux. It just came out, and it worked flawlessly out of the box. Everything on the netbook behaves as it should without me spending all day trying to get it to be that way. That's how Linux should be, so hats off to the Ubuntu developers. Now the netbook has more functionality than it did before.

On Sunday the following happened:

Emily went out to ride in the morning. While she was gone I went downstairs to move a light fixture in the ceiling beams. It is in the way of the Smith press which I also put together today (more on that later). While down there I was examining the insane wiring that is going on and decided I was going to sort it out. I want to rewire some of the circuits in the house (eventually) because a lot of them don't make sense. (For instance, the outlet in the kitchen that our toaster oven is plugged into is the same circuit as my room which has all of the computer stuff in the house. Plus it's not GFCIed and code requires that for counter kitchen receptacles.) It's a crazy mixture of old and new wiring and tons of "old" junction boxes where 10 wires come in and out and who knows where they go. So I started at the beginning: the breaker box. I figured out which wires coming out of it were which circuit breaker number and labelled them. Just this shed a lot of light on things and set me well on the way to getting it all sorted out. Here's a picture of the aftermath (and a hint of the craziness of the wiring):

Shortly after I finished that project Emily came home. Next I finally mounted a picture Holly sent me as a present. It looks excellent in black/white room:

A hint for people mounting things in drywall: The "Cobra" brand plastic screw anchors from Lowe's, the #6-8x1" ones. They come in white, which is great for our walls. But I have determined and am now writing down permanently the fact that a 3/16" drill bit makes the perfect size pilot hole. I'm only using anchors now that I know that. That's the most frustrating part of using plastic anchors in general. I always drill a hole too small, try and hammer it in, screw up the anchor, drill the hole bigger, etc.

After that Trevor came over and we went to the Red Canoe for lunch. I had an excellent panini (it's one of the only places I've found up here where you can get a nice hot panini) and so did Trevor. Emily had a grilled cheese on panini bread, though she actually ordered a tuna melt but was too nice to tell them. They also forgot to bring Trevor's tomato bisque soup out. I will forgive them because it's a small place and the food is great anyway and they didn't charge us for it (they just forgot to write it down when we ordered it, I guess). It's a really neat place and the food is made to order (so it takes a while to get it, but it's worth it). They also serve excellent coffee and I had a (hot, even though it was hot outside) mocha. After we finished eating we also bought six muffins (well, Trevor bought two). They have been voted "Best Muffins" in Baltimore for several years running, and they deserve it. I'm looking forward to a num num num breakfast.

Following our lunch outing we went home and Trevor was kind enough to help me put the Smith press together (since we really needed three people for the job). It was indeed tricky to get it up. It is so totally precariously close to the ceiling it's amazing. You can see the light that I "moved" (I'm going to actually move it and put a junction box and outlet in where it was, and then put up a long fluorescent light in it's place) as well as our water main line (which we had to carefully flex up a bit to get the thing put together, yikes!).

Super close! You can see the part that is actually above the beam there.

Trevor then headed home. Emily went outside and pulled out a ton of dandelions. Shortly thereafter we decided a trip to Lowe's was in order. I made a wishlist consisting of a bunch of things and she had a mental wishlist of flowers to buy. It was actually a pretty good trip. I bought some extra electrical supplies and the fluorescent light I mentioned earlier, along with a little workbench/vicey thing. One of these days I'm going to put a proper workbench in the basement... one of these days. Emily got some very pretty flowers and herbs as well. I also bought a case of 12 fluorescent 48" T8 light bulbs, which I'm pretty sure are the same ones we use in the kitchen (and for my new fixture). They were half the price of buying them two at a time and I couldn't help it. I'll have enough lights for the next 10 years now.

After all that I did a tiny little workout on the bench and discovered how amazingly weak my pectoral muscles have become. That will change, hopefully! Then I went outside (it's dusk by this time) and did a 3/4-hearted effort mowing the lawn, which really needed it. It'll make it another week or two now at least. We still don't have real grass coming up everywhere, just weird patches here and there.

Oh, also, we're deciding on a deck person tonight. I'm likely to go with the last person we saw, from the Fence and Deck Connection. He was a bit more salesman-ey than all the other people we saw, but this is also the only company that I had a personal recommendation from (a coworker of mine knows the owner well and has had two decks built by them). His price was very reasonable, and in fact one of the lowest and it included a black aluminum picket fence rather than just 2x2 wood pickets. That'll be easier to maintain and look nicer. I feel a bit torn because I really liked the second to last guy (the owner of Frontier Deck Builders). He was a very affable fellow, but I guess affability doesn't really matter when it comes to having someone build you a deck. Tomorrow or Tuesday we'll sign and fax some paperwork around. Hopefully have a deck by June! Sweet. We also upped the size to 22'x12'.

This is a long post! *phew* Now doesn't everyone feel like they just spent the whole weekend with me?

Oh and also, Mom: no, there was no reason we were looking at the PET/CT other than I wanted that image. Also there are a few interesting things to point out in it. Obviously you can see my port clear as day and the stent. But you can also see my colon. It's a sort of splotchy thing starting a little above where my bellybutton is. The splotchiness is in fact poop in my colon, exciting! But you can also see that I don't have a "normal" colon. Most people, it goes left-right, goes straight down, then goes left again before connecting to your anus. You can see mine goes left-right, then does a diagonal to my anus. That's because they removed about 20" of it right near the rectal verge and had to reconnect it. Up in my chest, where my heart and lungs are (the lungs are the big black voids) you can see these sort of spidery vein looking things coming out from the center of my chest. That's actually scar tissue from the radiation I had for Hodgkin's disease. I've been told that normal people don't have this (I've never seen anyone else's before). It's not really a "big" deal or something to worry about, but I just have to be careful to be sure I stay current with my health in the future as it can lead to some respiratory problems late in life. I think I am more proactive about my health care than 99.99% of the population though, so no worries. Plus late-term respiratory problems are basically one of the least worrying things for me at the moment, hah!

The last PET/CT I had

2009-04-23T20:20:00.005-04:00

During my last visit with Dr. Kasamon we played around with the PET/CT viewer from Advanced Radiology for about ten minutes. We were trying to figure out how to export a very high resolution JPEG image of my "pilot" CT image (the image of my whole body, created via image processing from the many discrete "slices" of CT data). I know the actual image is something huge like 40 or 50 megapixels. We could only figure out how to get one the size of window we were looking at, but it's good enough. I'm going to request a copy of the CD sometime so I can play with it on my own.

Here's a picture of it. It's pretty neat and impressive looking. Modesty did overcome me though. My private parts were pretty ostensible!

Taken 2009-02-20

Dentist

2009-04-21T20:21:00.002-04:00

I've been more tired than usual lately. Can't tell if it's just me getting used to sleeping a lot again or what. I just haven't been able to pull myself out of bed in the morning. It could have something to do with the cats waking me up every morning at the crack of dawn demanding food. I want to blame it on them. It's probably not their fault though (they are still annoying).

I went to the dentist today after an astonishing 2.5 hours at work. It was a blast. I had two cavities filled (#4 and #5, D.O. and M.O., don't know which was which) and #30 M.O/.D.O., which wasn't actually a cavity but actually an old filling that cracked. That was the reason I went in, I noticed it was a bit painful to bite down and there was some weird protrusion that I couldn't remove with floss, and it was very difficult (and painful) to get floss in there. The dentist extracted the cracked filling with some carefully placed floss.

My mouth hurts like crap right now. Hopefully those nerves in my teeth calm down. I do not like hurting teeth. I don't really like going to the dentist either, seeing as how it always means I'm going to get drilled for something.

Weekend

2009-04-19T08:53:00.002-04:00

I slept a lot this week. I made it in to work for about 5 hours on Friday.

Emily and I had a long day on Saturday. We did all sorts of stuff. Emily took her car in to have some work done. A fellow from Frontier Deck Builders came out and gave us estimate on a deck as well. He's the third person we've seen thus far and I think I liked him the best. There's a fourth person that we're supposed to meet (from Fence and Deck Connection) but we've had some issues getting it scheduled. I'll try to get a meeting arranged for the next couple days but if not, we might just pull the trigger on one of the first three. Anyway, after that we went to Scittino's and had some excellent pizza. Then we went to downtown Catonsville and walked around. We went into some antique stores and generally explored. We had never bothered to do that before. There are some neat restaurant/deli type places we'll have to try and check out sometime. Then we picked Emily's car up.

Later on in the day we went out to see Addy's new farm. I had never been there before. It's huge and extremely nice. There were all sorts of people out there riding. I'm very glad she finally has a new home. I'm very happy about the change. Emily sure seems happier too. Then on the way home we went to Opie's and gorged on some soft serve.

We were both pretty exhausted after that day!

Today I didn't really get out of bed until about 2:00PM. Totally crazy. We vowed not to drive anywhere or go too far from the house, and we have thus far succeeded. We did finally organize the basement. I picked up some more wire shelves (I love those things!) and we consolidated a ton of empty boxes and what-not. Then we began planning to move and assemble the Smith press finally. I don't think we're going to be able to do it ourselves, we're going to need a third person. Also there's really only one spot I can put it, and I think one of the five basement lights is in the way. I don't really want to move it, but I will if I have to. It'll add another month to the timelime I'm sure because I'll never get around to actually doing it. I'll have to scope it out again some other time and see if I can squeeze it all in somehow.

The basement looks good though. I guess that counts as our spring cleaning!

Still here!

2009-04-15T08:40:00.003-04:00

I suspect some people are probably freaking out because I didn't post anything! Well I'm still here.

It went pretty well. I have 10ml or so of 5-FU left in my portable pump which I am going to have removed around 1:00pm today. I've found that the biggest side effects I have to deal with are constipation, which seems to sometimes be followed by a small bout of diarrhea, and some horrendous stomach acid reflux. I've got an appointment with Dr. Kasamon for next Wednesday so I am going to bring that up and ask for something prescription strength. Maalox and acid reducer tablets have their place, but this can be pretty uncomfortable. My netbook/laptop is both a blessing and a curse. I need to sleep more, but I spend tons of time playing on the interwebs in bed rather than sleeping. I almost feel like I'm back in college, with lots of free time to just go read stuff online and play with things. But I'm trying to make a more concerted effort to just put it down and sleep. I felt pretty crappy yesterday (not enough sleep, acid reflux) but today is good so far. Except I am freezing. I spent 2-3 hours on the toilet this morning and it sapped all the warmth out of me.

I am now 1/3 done with my treatment. I'm two cycles into the six cycle treatment (for some reason two doses is considered one cycle). That's pretty cool I suppose.

The bleeding from the stent stopped on Sunday night so that wasn't a big deal either, other than the somewhat severe discomfort it put me in.

We cleaned up our yard a bit last weekend. For some reason a lot of our grass is still brown and many people have green yards now. One of these days I want to just till it and put down a uniform coat of fescue or something. It's a patchwork of like 6 different kinds of grasses and grassy weeds now. Last year I let this hill get out of control with weeds because I was afraid of erosion. Not anymore, I weed whacked the whole thing down. I also let some plants and clover invade various parts of the yard last year because I either didn't feel like mowing or I thought it was pretty. That got to be crazy too, so not this year. The whole yard is staying mowed and free of plant creep.

I have to pay some medical bills today. For whatever reason I've just been putting off mailing them in. I owe Dr. Somerville $260, but I've only been billed for $230 (insurance lag). I guess I'll just send the $260 and save myself a stamp. There has also been a long running dispute with Patient First that I need to get sorted out. Having experience dealing with insurance companies in the past, I am fairly certain the insurance company is losing/misfiling/ignoring this paperwork that Patient First has sent twice now to enable a claim to be settled. Yay!

Also I bought a black and white laser printer (a Brother HL-5250DN, which was on sale at the time for like $150). I've always wanted a laser printer. They just print text so crisply. Now I will have to find things to print. I almost bought a color laser but just couldn't justify it. This printer can automatically print on both sides of the paper though ("duplex" printing). It's almost too exciting for me.

Anyway, I am now off to play more on the internet. I think today I will set up an asterisk server on Steven's virtual server and move my VoIP stuff in the house to point to it. More reliable than having the central server be at my house here.

Went for a bike ride

2009-04-12T18:18:00.002-04:00

I went for a bike ride, even though it's only 54 degrees outside. It wasn't too bad, the cold. It sure would have been nicer if it were warmer. I did about 8 miles at an average speed on 13mph and an average cadence of 75. Not stellar by any means, but I wasn't completely exhausted by the time I was done, so that's good.

I forgot my water for one thing, though it was so cold I didn't even sweat and didn't really need any for such a short ride. The worst part though was this constant feeling that I had to pee. Turns out I aggravated my stent. I was warned that this can happen. I have this amazingly uncomfortable sensation of having to pee, though I don't. And when I do there is an unhealthy tinge of blood to it. I'm not worried about it since I've seen that before and was warned about it (the stent can sort of knock around inside and scratch blood vessels, so you get some blood in your urine).

But I think it does mean that I will not be doing any more bike riding until that stent is gone. Oh well. I need to call Dr. Fenig again soon. He was going to call me after conferring with Dr. Kasamon about things, but never did. This is typical doctor behavior ;) He wants to change it out in May last I heard. I want to wait until I've had my mid-chemo PET/CT and have the results. I am of course hopeful that they will be positive. Then Dr. Fenig can go in, take the stent out, poke around, take whatever biopsies he wants, examine the situation again, and hopefully determine that indeed I don't need a stent anymore at all. That would be good.

Also, last Tuesday I saw my cousin Heather (from my dad's side of family). That was nice, I haven't seen her in a while. We didn't have long to hang out, but she, Emily, and I ate some dinner out and she spent her last night here.

Almost to round #4

2009-04-10T20:05:00.008-04:00

This has been a pretty normal week. I think I worked about 38 hours, so very nearly a 40 hour week! Exciting! I am still trying to fight off this cold I've had since last Tuesday or so. It just doesn't want to go away. I don't feel too bad, but I'm still hacking and have a mildly sniffy nose. Very annoying. So things have been going pretty well. I knocked a bunch of stuff at work that I had been putting off and buttoned a few things up, which was productive and good. Hopefully it all works while I skip out for the next 3-5 days! Round #4 is this Monday. Hopefully it goes well. I'll be 1/3 of the way through after it. Bowel function has returned to normal pretty much. I'm off of laxatives (except around chemo days where I think I still need them). So I'm pretty much pill free lately. I'd say drug free, except of course for the chemo which I think counts as drugs.

We have not put any holes in the wall nor have I put any effort into putting the Smith machine together! I pretty much never do anything on weekdays other than work, eat, play on the computer a bit, and sleep. So weekends are the only feasible time to get anything like that done. We didn't really clean the basement all that much last weekend either which is preventing me from moving the Smith machine around. I think I know where I want it, and there is a huge pile of junk there right now. We have no major plans for the weekend so hopefully that will translate into getting some more stuff organized around the house. I finally called some other contractors to come out and give us some quotes on a deck. I got ahold of 3 more and have a marathon the next week of meeting them. I look forward to seeing what they have to say.

The weather is chilling off again for the weekend (< class="blsp-spelling-error" id="SPELLING_ERROR_1">oogling at computer parts. I have a strange inclination to build another computer. We already have plenty in this house. But I want more! I'm sure I could find better things to spend the money on though. Currently I am listening to Squarepusher. I highly recommend it to everyone, though I imagine I might be the only person to actually like it. He once played a concert in Atlanta (he rarely tours, and even more rarely comes to the U.S.) which a couple of friends of mine were going to. I was all set to go, and it turned out to be on the same day (a Saturday, of all days) as my CHM2045 (General Chemistry I) final. I could have skipped the final completely and gotten a B+. I sat for the final and got an A. I wish I had seen Squarepusher ;)

Last weekend we went and ate some pizza at Scittino's in Catonsville. They have extremely excellent pizza. Best I've had up in Maryland so far (though to be fair I haven't tried many other places.) And best of all, Opie's was open next door!

Mine, before.

Emily's, before.

Ours, after. I ate more!

Here are some kitty pictures. Emily took them (actually she takes all of the pictures). She might use them in her blog too, but I'm first!

Squirrel is extremely happy in the sun.

(possibly the first cute pose he's ever had)

Can't sleep

2009-04-05T02:00:00.003-04:00

I cannot freaking sleep. This has been happening to me every 4 days or so. I just cannot fall asleep. Believe me, I want to be sleeping. I love sleep. I'm going to take some NyQuil after this (I have a cold still, so it's okay!) and hopefully finally slumber.

I was exhausted earlier today and took a short one hour nap. I doubt that did me in, but maybe.

Trevor and I went and retrieved the Smith machine from Virginia today. It took FOREVER. The cherry blossom festival was this weekend so I am guessing the traffic was much worse that usual for a weekend thanks to that. Also, Trevor's GPS had a brain fart and sent us all the way through the city on Route 50 to get down to VA. We ignored the GPS on the way back and stayed on the Interstate. The thing weighed a ton (actually more like a quarter ton, but still a lot!). I was totally exhausted after we were done hauling it up the hill at the guy's house and then back down the hill at my house into the basement. It's in quite a number of pieces at the moment. It just barely fits in the basement. I didn't bother to ask or measure the ceiling height of the basement. It's 6'10" to the floor joists and the Smith machine is 6'8" for most of it, except for a little part that is about 7', which will have to go between the floor joists. It will be fun trying to put it together again down there.

I'm cleaning the basement tomorrow too. It is brimming over with a bunch of junk. It needs to be organized before I will even consider picking a place to leave this huge weight thing permanently. I might have to go to Target and buy more wire racks! You can never have enough wire racks. Or junk to put on them, apparently.

Good night, hopefully.

It went well enough

2009-04-02T10:47:00.003-04:00

Chemo was actually not too bad this time. I didn't sleep all day Tuesday, though I wish I had slept more. I woke up in the morning when Emily was leaving and stayed awake for most of the day after it. Seems like the effects of the Irinotecan were less this time.

I did discover Tuesday night that I have a cold though, which really sucks. I'm staying home today and taking it easy, trying to get over it. I don't have a fever and my blood counts are okay so being sick should not be a huge deal. I'm hacking up all sorts of yellow stuff though so hopefully this gets sorted out soon.

We had a fellow come out, J.D. from T.W. Ellis Contractors, to give us a quote on putting a deck on the back of the house to fill in the abyss that is our french doors. I had absolutely no idea what the cost of putting a deck on would be, but had some numbers in my head that were "acceptable" should the numbers given to me fall within that range. J.D. was very friendly and not pushy at all, which was very nice. In case anyone is curious, a 22'x10' deck built 9' or so off the ground on our crazy hill will run you about $6,000. That's less than I figured. I think we'll have a deck installed! I almost don't want to bother calling anyone else for competing quotes, but feel as though I must.

Also this weekend I'm going to pick up an exercise set from way down in Woodbridge, VA (thanks entirely to the graciousness of Trevor, who agreed to waste half his day and use his F150 to bring it back here). It's a Smith machine, which I know lots of exercise specialists/body builder types hate because it "forces you into an unnatural movement" or something, but I've used them before and like them and you can get away with using a spotter. It also has a cable system so I can do several of my favorite exercises. Hopefully I actually use it when I'm feeling well. It's been 2 or 3 years since I actively worked out, but I'm trying to put weight back on and just eating a lot is going to cause it to come back in a way I'd prefer it not. Hopefully this way I can put some muscle back on. I'm waiting for warm weather too for biking! My legs lost a tremendous amount of muscle, probably because that's where most of my body weight was stored up. It will take a long time to be back in shape enough to not dread riding around the hills here.

I probably had more things to share with everyone reading this, but I've got a headache so I'm going to be moving along now.

Getting some chemo

2009-03-30T11:53:00.004-04:00

I'm sitting here on COHA Columbia getting my chemo started. My first drip was IV Lorazepam (Ativan) and benadryl. Holly's neurotic old cat Spooky was on Lorazepam, which I find humorous. It makes you sleepy and generally affects your mood. It also has antiemetic properties. It will probably take my mind off of what's going on and eventually make me go to sleep, which is great.

Also I remembered a word which was obviously escaping me in the last post: barber.

My fancy little netbook (thanks guys for chipping in and buying me a new toy!) has a webcam where I have taken a picture right before the drips started.

I still look pretty happy there! I am definitely getting loopy fast though. Feels like the world is slowing down a bit around me. Like if I look around quickly it seems like my visual sense can't quite keep up, there's a sort of 3 dimensional echo, like my eyes aren't communicating at the proper rate to my brain. Hopefully the treatment goes well. I'm still just getting all the drugs to get me ready for the "real ones" at the moment.

I like all of the nurses that I have encountered so far. They are all very good. I'm pleased with my overall care as well. I know my mom thinks I'm getting terrible care for whatever reason, but it's not true. Dr. Somerville was a good surgeon. I didn't have any surgical related mishaps on either side. He has different priorities though and I can respect that. He cuts people. Blood is for someone else. Dr. Kasamon has been extremely excellent. All of my appointments with him last twice as long as they are supposed to and throw off all of his schedules. He'll talk with me as long as I like about all the various factors going into his decisions and my health. Often when one has a repeating doctor visit you sort of begin to dread it because it's the same questions every time and it takes 5 minutes and you just wasted half your day for the appointment. I certainly come out with a substantial plate of knowledge to chew on generally from him.

A new 'do!

2009-03-29T20:32:00.010-04:00

I had a big haircut today. I had a very friendly Vietnamese (I think) hair cutter person. They were very interested why I wanted to not only have my hair cut and donated but why I further wanted it shaved off. I was trying to avoid getting into a discussion about having cancer but it was pretty unavoidable. Turns out the hair cutter person, her son died of colon cancer at 38 (which is very young still for colon cancer) and her husband died of a heart attack. She has bad luck like me. I was afraid she was going to cry or something; it's probably not common she talks about stuff like that with her hair cutees.

We had a very good weekend. On Saturday we went to the Baltimore hamfest and Emily was able to witness a truly crazy nerd event. It was very large, much much bigger than the Gainesville one. There was a tremendous amount of total junk available and a handful of booths with new neat stuff. I doubt I'll go back again, but it was a good experience nonetheless. Then we drove up to Hunt Valley and ate brunch at a completely packed Panera. Then we drove back down to Timonium and went to Lowe's. I wanted to find some household organization stuff and I wanted to pick out some stone/brick to do edging around the front of our house with. Emily did not like any of the brick so that's unfortunate. We'll have to find some somewhere else to get some acceptable rocks. Didn't find anything I really liked for organization either. It was a totally fruitless trip. To try to make things better we went farther east to Ikea in White Marsh. That didn't go very well at all (at least initially). We went through the whole showroom part of the place and didn't find anything that was the right size or right look that we totally liked. In the end we still managed to spent $250 though. I found something in the warehouse that I didn't notice in the showroom that was good for one of the spots I wanted some shelves. We bought another thing to organize our shoes and other stuff. It's unfinished pine, so we went to Lowe's today and bought some stain. Hopefully soon (next weekend I guess) we'll be able to stain it and get it put together and serving it's purpose. I've never stained anything so I am kind of excited about it.

We spent quite a bit of time this weekend organizing the house and cleaning things. We've bought all sorts of home organization products and are slowly putting them to work. We have also plotted out some spots to place a bunch of the pictures we have not yet hung. I've gotten over my aversion to putting holes in the wall. I don't care, I'm going to be here for a while and I may as well put holes wherever I want. I also have decided to look into basic woodworking. We still have some random nooks and crannies that we want "something" in (a table, some shelves). We'll never find anything to fit that is to our liking. I may as well make something that looks decent. How hard could it be?!? I checked out 3 books on woodworking from the library today. Maybe I'll be able to muster the energy to read them while I'm toasted in bed from chemo. Our house is finally starting to come together, after more than a year. We're getting the boxes off the floor and unpacked (well, the stuff in boxes usually just ends up in storage bins and shelves, but whatever).

Emily is not going to post anything tomorrow regarding my chemo unless something really bad happens. I probably won't post anything either if the previous two rounds are any indication of how I'll be feeling. If you hear nothing, you can safely assume I feel pretty shitty and extremely tired. ;)

Now, for some pictures:

This was taken before our "hike" around the park last week. It was cold out.

This is the new beanie that Emily made for me. It feels awesome. I think it's cashmere. This picture was taken today. Notice the shorter beard. (The hair cutter lady was very anxious to trim it up; I'm glad she did, it looked even more ridiculously long with no hair!)

No hair!

This is a picture of my room as of today. For those of you who have seen it before, you will likely notice a marked improvement in aesthetics. For those who haven't seen it, trust me... it's a lot better.

Another shot of room organization.

And lastly: a shot of me sitting at my computer desk in my new organized room.

I'm still around.

2009-03-28T08:32:00.002-04:00

It's been a week since my last post. Several times this week I have thought that I should write something but just never got around to it.

It has been a largely normal week. I worked a decent amount, including my first full 8 hour day in god knows how long. I had a couple of doctor's appointments and those went just fine too. I had a little stitch that poked through my skin around the port which I had to see Dr. Somerville about. I guess it was supposed to dissolve but because of its orientation it didn't. Anyway it only took him about 45 seconds to yank it out or do whatever it was he did (I couldn't see him while he was doing it).

My third round of chemotherapy is on Monday. It will be a blast, I'm sure. I think my hair is actually starting to come out now. I want to go somewhere and have them cut it and donate it to Locks of Life or whatever that charity is called, but will I actually take the time to do it? Who knows. I better do it soon though! I always said I wasn't attached to it (my hair), but truth be told now that I have to get rid of it I think I am more attached than I thought. I guess I've had it for nearly 4 years now and haven't had it cut.

Anyway it's supposed to be a crappy weekend, really rainy. I wanted to do some work outside but that's not going to happen. Maybe we'll make a trtip to Lowe's anyway and buy some stuff. The Baltimore Hamfest is this weekend too and I think we are going to go as soon as I finish writing this and take a shower. Hopefully it will be mildly entertaining.

So anyway, not too much to say. It was a normal week which is a good thing in my book.

Photos from Florida

2009-03-22T09:14:00.007-04:00

Darla!

Want to share that muffin?

The cannon

Hi everybody!

2009-03-21T19:34:00.002-04:00

This week wasn't too bad considering it was a chemo week. I felt pretty good by Wednesday actually. I had an appointment with Dr. Fenig (urologist) regarding the stent. He might be changing it out in May but is going to coordinate it with Dr. Kasamon. Later that day I did a little yard work. Then I realized I overdid it and was totally wiped out. I did manage to get into work for 4 hours on Thursday and 5 on Friday and felt better as each day went on.

Emily and I went out and did a bunch of stuff today. We bought a Tucker-proof trash can (has a lid) so that he can't knock it over every night and shred all of its contents over the floor. Then we went to AAA and finally picked up a bunch of maps for the surrounding area. Now hopefully when we find ourselves in some strange area around Baltimore we can actually find a way out. Then we went to REI. It wasn't a terribly eventful trip, didn't find anything spectacular. I did buy a new bike helmet though. Hopefully someday I'll be able to use it again. Then we went to Cromwell Valley Park which we had never been to before. It was alright, but it's still basically winter here and there were no leaves. I like Patapsco more. I have not felt very good all day nonetheless. I hoping going out and doing stuff would change that, but it didn't. So now I'm just resting.

I see everyone (well, at least everyone I know from Florida!) is very encouraging in my homesick thoughts of moving back. Emily and I will certainly be up here for another few years I would imagine. We both feel silly in wanting to move back to Florida, just because it's familiar to us. It seems like you ought to be able to move somewhere and have a new life too. We've found lots of neat places in Maryland that we like too, which we'd probably miss if we moved away. I'm certainly no fan of cold weather though. If I ever move anywhere else, it's not going to be any colder than Maryland that's for sure. I personally enjoy my job a lot as well and am pretty sure I wouldn't get the same sort of job satisfaction doing something else. But then again there is more to life than that! Seeing as how my entire extended family, sans father-in-law (who we still have to go visit in Kentucky), lives in Florida though.... that's very nice. It seems especially so when you're sick and laying in bed at home after having come back from there. I suppose Emily and I are still pretty young so there's plenty of time for us to make more life-altering decisions. Plus our house has to gain quite a bit in value again before we could abandon it anyway ;) Damned economy! Anyway, those are my thoughts on moving. I appreciate all of the encouragement to move back, but I think we'll have to settle for visits for now. Hopefully more often than once a year and not only when something bad happens.

Day #2

2009-03-17T13:00:00.002-04:00

I haven't really gotten out of bed yet at all today. I probably ought to get moving around, it'll probably be good for me. I sure don't feel like doing it though!

I don't feel too bad. My stomach is less than happy with me and I feel very tired. This is about what it felt like in the past, I think. This time went better than the first time. I still became very nauseous feeling but received about 3 different drugs for it. The last one, Adavan, I think helped the most.

I very much enjoyed our overly short trip back to Florida. I really would like to take a whole week off this summer and visit Emily's family and get everyone together for a bash. I hope Emily can get the time off work (she's taken quite a bit of time to be with me so far!). I think I can get it. I sure miss Florida now though. Maybe it's just a temporary urge, but I really want to move back somewhere closer to home and all of my family where it is warm and the roads are nice for biking. *sigh* We were able to enjoy the grandeur of Publix once again and partake in Publix subs while catching up with Chelsea and Steve (who went camping in Key West, I want to go next time!). We ate a whole lot of food at Leonardo's By The Slice with Steven. I was also finally able to introduce Emily to Hogan's Heros subs, which I believe are probably the best subs I've ever had anywhere. We didn't make it to Backyard BBQ in Newberry (completely forgot, not that we had any room for it!) and I still have yet to eat at Satchel's pizza. Another visit must be in order!

We took some good pictures, but Emily has them all and I don't have the patience to put them in here. Maybe she'll do it for me sometime!

2 down, 10 to go!

2009-03-16T18:27:00.003-04:00

Hi all! Ryan's asleep in bed, so I'm taking it upon myself to update the blog to let you all know that chemo #2 is finished. I'm sure Ryan will go into futher detail, but today's treatment was not as bad as last time. Still nowhere near comfortable, but a little better since he wasn't constipated. Treatment today was at the Tate Cancer Center. (Dr. Kasamon operates out of both Tate and the Columbia center.) The treatment chairs are a little more private than at the Columbia location, but in all other respects it's about the same. The nurses at both locations are exceptional. (Maybe that's the norm for oncology nurses?)

I very much enjoyed meeting all of you that I hadn't already met, and seeing again everyone I already knew. Thanks for making me feel welcome!

We're back

2009-03-16T00:18:00.002-04:00

Our flight was delayed more than two hours but it did eventually arrive and we are safely home and in bed. Time for some sleep. I have to get up at the ungodly early hour of 8:00AM so I can make it to chemo by 9:30!

I need to remember to check flight status before leaving the house from now on.

Nighty night!

Want to know what a stent looks like?

2009-03-10T19:51:00.002-04:00

It's big.

Today was a good day

2009-03-09T20:29:00.004-04:00

I had a miraculous good night of sleep last night. I woke up this morning and wasn't in that much discomfort. My GU pain appears to have mostly dissipated as well.

Dr. Kasamon got the results from my last "UTI" urine bacteria culture. It turns out there wasn't much bacteria at all, suggesting I didn't actually have a UTI. Just some other sort of "inflammation". Since my symptoms have mostly gone away today, maybe this is just some sort of periodic extremely annoying thing I'm going to have to deal with. In any case it seems unlikely that antibiotics would have helped anyway (other than placebo effect). I went by Kasamon's office and they took some blood to see how I was doing after my first week of chemo and they also took a urine sample to check it out as well. I ended up not seeing Dr. Somerville since the issues there seem largely resolved. I have an office appointment with the urologist who put my stent in, Dr. Fenig, next Wednesday. I'm going to have to make a habit of keeping up with him I think so that this stent thing gets worked out.

After the visit to Kasamon's office I went to work for about 5 hours.

Before the sun set Emily and I went back to the park and unloaded another old loaf of bread on the ducks and geese.

All together it was a pretty eventful day. I am finally tired now though. Lots of walking and doing stuff. I hope I didn't overdo it! Emily is out driving to put a light blanket on her horse right now. I can't wait until Addy finds a new home. It is absolutely ridiculous the complete lack of care her horse receives for the money we're paying. I'd rather pay twice as much (we might end up doing just that!) for her to be cared for properly.

Sunday

2009-03-08T17:47:00.002-04:00

I've decided to wait until Monday to address my GU issue. Dr. Kasamon rightly suggested that it would be good to have a urinalysis prior to starting antibiotics again, just to be sure what ground state was. Since I am going to his office tomorrow anyway for blood work, I believe he's also going to have a urine sample and I think he is going to give me a prescription for cipro to relieve the symptoms. I explained that this was a tricky week because I am planning on going to Florida so hopefully it all works out. I am cautiously optimistic that my travel plans will not be derailed.

I'm not sleeping very well at all lately. Hard to explain why. Obviously I just don't feel well. I have been trying not to take the 20mg Oxycontin anymore, which could have something to do with it as well. I have been taking the immediate release capsules in 5mg doses (including through the day now) so I'm not sure my goal of not using narcotics is really having any effect. I don't think there's a reason for it, but the immediate release stuff, when I take it right before bedtime, gives me crazy dreams (well, it gives me dreams at all... which I don't like because normally I don't seem to dream and I'm used to that). That didn't happen with the Oxycontin I think.

Emily and I just got back from a lengthy walk (about 1.6 miles according to Google) which is easily the most exercise I've had in a while. We brought some stale bread and fed some cute ducks and some bossy geese. It was fun. This is probably the nicest or second nicest day we've had here in the last 5 months or so. If it were sunnier (it's been overcast) it would certainly be the best. Yesterday was very nice too.

I need to actually get to work this week for at least a day. I certainly wasn't "planning" to take all of last week off. I have to get in and submit some paperwork for what is essentially disability leave, since I'm going to need it a bit earlier than I had hoped. I think by the end of this week I'll have spent all of my sick and vacation time. Sucks. Oh well, getting sucks too I suppose. I'm just glad my employer is so extremely flexible and accommodating to those with problems like mine.

Also in a completely unrelated note I never got any email or snail mail from REI regarding my dividend money from last year, which should be a fairly substantial amount I think. I need to call and see if there has been some snafu and get that sorted out. I need to spend more money on outdoors stuff that I can look at expectantly!

I'm very tired right now. Maybe I'll try to eat something, maybe watch some mindless TV (Top Gear! ... by the way Mom, Top Gear S12E01 means the 12th season episode 1 of Top Gear, a show about cars that airs on BBC2 in the UK -- we download it and watch it, the presenters and content are highly entertaining). I've also had watching all of Babylon 5 on my hitlist for quite some time. I own the first season on DVD and have never watched all of it! Maybe now I'll have enough time and lack of desire to do anything else to veg out for that long of time.

Status of my GI & GU tracts

2009-03-07T20:31:00.002-05:00

So I saw Dr. Somerville on Friday morning (after we drove to the wrong office first because of some miscommunication). He prodded some stuff up my backside and pronounced that he couldn't see anything immediately wrong. He gave me a prescription to have some x-rays of my abdomen and to come see him again on Monday. Well that really wouldn't do because I wasn't sure I was going to make it through the weekend and Emily was equally unnerved. We went home and I passed out asleep again until very late in the afternoon. Finally I got up and we went to Patient First and I explained the whole situation again to the doctor there. We went there because they can do x-rays and will actually look at it right away and tell you something. Basically I wanted to know if I needed to be in the ER or if this was really something that could be solved with OTC/prescription stuff. Well it turns out I'm not really "all that backed up". The doctor was very emphatic (more so than any other doctor I've talked to about this) that I need to be taking an OTC laxative and stool softener daily when using any narcotics (e.g. oxycodone). I was/am aware that narcotics have a constipative effect but no one has ever been that emphatic about the need for laxatives in combination with them. In any case, he gave me a prescription for golytely (which is the 4L of junk they give you to guzzle for a colonoscopy) but said I could take it at my leisure. This stuff is just poly-ethylene glycol, which is also available OTC as Mira-Lax (which I have). I haven't filled this prescription yet. I did take senna when we got home. I had a fairly satisfactory (if extremely ill-formed, so to speak) bowel movement today, which was great in my book. I'm not sure if I'll switch to Mira-lax and continue with senna. I think I'll stick with senna tonight.

Now the only problem is that I am highly suspect that I have (another) urinary tract infection of some sort. Same sort of groinal area pain that led up to me being sure something was wrong last time. I am getting good at spotting these things so I will be amazed if I am wrong. This whole stent thing is actually a pretty abortive medical situation in my opinion. It was put it about 2 hours after I had a CAT scan showing that I needed one and I was totally out of it when I agreed to it (I would have agreed to it anyway though). But I have never really had any consultation with anyone about it, it's just sort of sitting there keeping things open and attracting bacteria. I never did get word from Dr. Kasamon on what sort of coordination I should be having with Dr. Fenig (who placed the stent) and him, if any. If I don't feel better tomorrow, it's back to Patient First for a pee test and likely more antibiotics. I wrote Dr. Kasamon an email and asked if I should be on prophylaxis antibiotics given the stent and the chemotherapy. I want and feel that the answer should be yes. He will sometimes respond to my emails over the weekend, and I hope he does and he can just call in some antibiotic that I can take and increase the chances for developing antibiotic resistant bacteria on the world by using it for a really long time.

I actually went out with Emily today to look at a farm, and then we went to the Columbia mall and did a wee bit of shopping. Then we ate at Chik-fil-A. I've had a fair bit of food today, so that's good. I did not want to get up this morning. I think that happens when you essentially spend an entire week in bed. But I'm glad I got up. I am very tired right now. Who knows why. Maybe because I got up and did something today. I think it's a UTI. We'll see.

A quick update

2009-03-05T20:07:00.003-05:00

I talked to Dr. Kasamon who basically deferred to Dr. Somerville on the specifics of this matter. Dr. Somerville called me back about an hour after that. I explained the situation to him (I haven't spoken with him since he put my port in). He didn't sound terribly worried or concerned, but then again he never does so that is no indication of anything. I'm going to see him at his office tomorrow morning where I presume he will poke and prod me and make some decisions.

I probably won't be getting in to work tomorrow (in case any of my coworkers are reading this!).

Hopefully whatever is going on requires me to take some pills or do something simple. We'll see.

Unfortunately it's not good news

2009-03-05T14:46:00.002-05:00

Things are not good with my bowels. I think there is a blockage somewhere in my GI tract. Last Thursday I resorted to quite an array of oral laxatives to try and "get things moving" after about 5 or 6 days without a bowel movement. It eventually succeeded. Then another 6 days went by until last night rolled around without a bowel movement again. Oral laxatives did not do the trick this time. So we resorted to an enema, which had some effect but not what you would expect for 6 days without a poo. I have been pretty miserable from this because it makes me very not hungry, sick to my stomach, and sometimes creates this pain down in my abdomen. Emily and very worried. She and I are going to get into a fight or something over this I think. I know she is very worried about me and she thinks I'm being stubborn. I don't want to go to the ER, but she thinks I should have gone last night I think. I am waiting for Dr. Kasamon and Dr. Somerville to return phone calls that I placed to them. I am hoping Dr. Somerville (who I imagine will be the final word in this) has some ideas to try and get things moving "naturally" because surgical unimpaction is the next option I think, and I really don't want any more surgery. Furthermore I hope this gets resolved before next week because Emily and I have non-refundable tickets to Florida. *sigh*

I don't know if it's trailing effects from the chemo or just my general unhappiness over things, but I have been sleeping like crazy. I didn't go to work today and have basically slept all day. I hope to go tomorrow but I really don't want to if my stomach is messed up. Yesterday I had a fig bar and some granola, and today I've had a bagel with some cheese, an apricot, and a banana. I hope to have some soup for dinner.

I just wish I could sit on the toilet and poop like a normal person. I think that would make me a happy person.

I also want to toss out that I'm very happy to have Emily with me up here. She really cares about me and feels helpless seeing me in the state I am (I'm helpless too!). I love her and hopefully we can go out and do something fun in the near future.

Pump is almost empty

2009-03-04T09:33:00.002-05:00

I am waiting around for my pump to empty out. It has a couple of hours left. After I have it removed I'm coming home and taking a shower which I think I will very much enjoy.

The irinotecan that I had on Monday I think was by far the worst of the drugs so far. The 5-FU which I've been getting over the last 48 hours doesn't seem to be doing too much to me yet other than perhaps making me tired. My biggest complaint is that my stomach is weird, which is a complaint that I have had for quite some time. I think my bowels are still not normal. I imagine it is hard for them to get normal when I'm constantly taking pills that either cause constipation or diarrhea and vice-versa. Right now I think things are bound up and I need to get that fixed. It's odd because these chemotherapy drugs, the most serious side effect is supposed to be the possibility of very bad diarrhea which is exactly the opposite of what I'm experiencing I think.

I'm certainly not going to work today, I'm not sure about tomorrow. I don't want to let this knock me down too much... but we'll just have to see. If I can get my stomach and assorted other pains under control I think I'll feel pretty normal.

I thought that my FSA was set up so that they automatically figured out when I had eligible expenses from my insurance and would automatically reimburse me. Turns out that was not the case and I have to go submit like 25 pages of insurance "explanation of benefits" to get reimbursed for all the stuff since the beginning of the year. Oh well, it will certainly be worth it! I also took care of dealing with a few annoying insurance/bill related issues today. I've decided dental insurance is basically useless. I will certainly not be paying for it again next year. I'd rather just bear the full cost and use the money from my FSA to cover things. I didn't realize that my normal health insurance actually covers some minimal dental work (some xrays and cleaning) which is nice. It also makes my supplemental dental insurance a lot more expensive that it should be in my mind, so I won't be paying for it next year!

First day of chemo

2009-03-02T19:25:00.002-05:00

Today was the first day of chemotherapy for me. It didn't go so great. I don't know what exactly it was, but it sure seemed worse than all the therapy I had had before. Maybe just because it is the first day and it's been a while since I've felt this way. I am feeling better now than I did earlier. I've been sleeping since I got home basically.

On other news, my coworkers have all been great to me. I know many of the people who read this are my relatives in Florida. I'm sure they would all love for me to be back there for all of this but sadly that is not the reality of things. I don't really have any friends in Maryland, so to speak (and neither does Emily) so it does make things more difficult. My coworkers have been wonderful throughout this though and would consider them to be my closest network of friends up here. They came to visit me when I was in the hospital and that was very nice. They got Emily and I dinners when the surgery rolled around to make things easier. They have all been very eager to help in any way possible. Well yesterday Todd me by my house and gave me a present which was purchased from a pool of money they raised. They bought me a "netbook" which is essentially a smaller and lightweight version of a laptop so that I can use it while in bed or at the hospital or whatever. It's a very generous gift and I wasn't expecting it (though there was some vague talk about it while I was in the hospital, I certainly didn't think I would be getting a brand new laptop ever!) I am typing this post on the netbook now. My only complaint is that they have put the right shift key in a stupid stop and I am continually hitting the up arrow instead which is becoming extremely annoying. I am sure I will get used to it eventually. But anyway they have been great and if any of them are reading this I just want to say thank you for all your positive thoughts and actions!

Chemo starts soon

2009-03-01T13:35:00.003-05:00

So it's been a while since I last wrote something in here. The grapevine tells me that everyone is all antsy in their pantsy to see something. Hopefully I continue to have the drive to write in here. My primary concern in starting it was that I would lose interest sooner rather than later and everybody would be all bummed out.

There hasn't been a whole lot to tell. This week was pretty good on the whole. My stomach has been acting up now and again though for some reason. I felt pretty poor Tuesday night I think it was and didn't go to work at all on Wednesday. I did actually work my first full 8-hour day on Friday in more than a couple of months (or at least it feels like it's been that long). I was tired for a little bit in the middle of the day but got a second wind and felt fine. I was pretty good at home too, but then for some reason my stomach acted up again.

Saturday morning-ish Emily and I went out to Glenelg to look at another prospective farm. I think Addy would receive better care there now (as opposed to the no care she receives at the moment). It's not very geographically desirable in my mind though and I think it would come out being a fair bit of money. No indoor arenas and the one ring they have isn't completely level, which I am told is not good. After we got back from that farm we had some food and I got really tired and passed out, from about 1:00-4:00PM. I woke up (actually I think Emily roused me) just in time to get ready to leave for an evening engagement we had with some friends. That was very entertaining as well, but we didn't get home until about 10:00PM, which is super late for me! I was very tired. Stomach didn't feel well again, but it calmed down eventually and I got some sleep.

I have slept for most of the day thus far as well. Emily is out right now looking at another farm for Addy that will also likely be unsuitable. I plan to do essentially nothing today.

Tomorrow is my first day of chemotherapy. I need to write down a big list of questions and other things I need to talk to my oncologist about and hopefully I see him tomorrow (strictly speaking he doesn't have to see me for the infusions). I am looking forward to it. Hopefully some of my annoying symptoms (e.g. chronic pain) begin to dissipate. Of course, I'm likely to experience "clinically significant diarrhea" which won't be a lot of fun. Perhaps it will be better than being constipated though?! Anyway I think on the whole it will be good.

What's a stent?

2009-02-23T18:50:00.002-05:00

In response to a question from my mother here is a little more information about what a stent is and some other stuff (and another update on my status):

A stent is kind of like a metal Chinese finger trap. They insert it into various canals in the body and expand it in some clever way. It forces/keeps various pathways open. There are lots of reasons why something like this may be needed. In my case it is likely a lymph node that was compressing my left ureter, causing my left kidney to enlarge and not drain properly (and thus also impairing my overall kidney function). A ureter is a very thin (and apparently normally almost invisible) canal that connects the kidney to the bladder, which is in turn connected to your "output" by the urethra. My left ureter is very obvious right now because is has a 24cm metal thing snaking through it keeping it open, from the bladder all the way to the kidney. Bacteria love foreign objects and thus they are known to cling to these things. Having it out as soon as possible in order, but since that's not an option yet we just have to keep a careful eye on it. I hope to get the most recent images from my last PET/CT scan and put them up. I will have lots of glow-in-the-x-ray bits (my new port and ureter, and some tumors... hopefully not too many of those). They are waiting for bacteria culture results from my urine to make sure that whatever I have will respond to the cipro, but I certainly feel better today than I did earlier... so that is a good sign in my book.

I worked 6.5 hours (well, 7 with a government mandated half hour "lunch"). I left the house around 9:30 and got home at 6:30, so it was a pretty long day for me as far as things have gone recently. I am pretty tired now, but it was a good productive day. I am going to go in late and work a short day tomorrow I think. I'm not falling into the trap of trying to have two full days in a row. If I do I'm sure come 2:00 tomorrow it will feel like someone has hit me with a ton of bricks.

My mother has said several times that I must be frustrated with things and that she feels upset reading about my trials and tribulations. Similarly when another person I know heard about my most recent malignancy she asked "Are you angry?". I thought it was an interesting question, because the answer is decisively no. Anger isn't an emotion that has even come across my mind since this all started happening. At what am I supposed to be angry? I will say that I was upset, in a sad way, as news of this started to trickle in. I know when things are not right though and I had suspected cancer for quite some time. Having some confirmation just cemented my belief. Being told that in fact I have stage IV metastatic colon cancer (as opposed to stage 1 colon cancer and recurrent Hodgkin's Lymphoma) was in fact the worst news I think I have ever received. I'd say you could probably have called me depressed about that news for at least a couple of weeks. But I was certainly not angry about it. It was depressing initially trying to come to terms with news like that though. I have come to terms with it though and it's not depressing anymore. It's just a fact and it doesn't really alter my situation or what I have to go through or what I am willing to go through and do. Hopefully I respond well and go on to live a longish and fruitful life. I don't think it's under anyone's control though. Not myself, not my oncologist, and since I'm an atheist not God. (note that you are still more than welcome to pray for my health though!) Only time will tell how I fare. I have a positive outlook though and until I am presented with a lot of evidence to the contrary that's how it's going to stay. Being young and invincible (hah!) has to count for something, yeah?

UTI

2009-02-22T13:13:00.002-05:00

Yesterday turned out to not be a very good day. Emily went to go visit a couple of prospective farms to move Addy to. I didn't go to the first one (too early in the morning!) but did go to the second. It was quite far away. I didn't feel all that well by the time we had left and it didn't get any better. By the time we got home I was sure something was wrong. I was pretty sure I had some sort of urinary tract infection, likely related to the stent I have in my left ureter.

We went to Patient First, a kind of walk-in clinic which is better than an emergency room. They took some blood and nothing looked bad there (which is good news) and looked at some pee. Sure enough there were bad things in my pee. So now I'm on cipro, an antibiotic, for the next 10 days. Hopefully that clears things up a bit. I'm going to talk to Dr. Kasasmon and perhaps the urologist who put the stent in and see if there is some coordination or something that needs to be going on here. I think the plan is to keep the stent for a while, until they are sure the lymph nodes that were (probably) obstructing the ureter to begin with have shrunk.

It seems like I wake up in the morning (or whenever) and feel fine for about 3-4 hours, then I start to feel worse until I finally fall asleep. Right now I don't feel too bad. I think I'm going to go to Scittino's Italian Market and get some lunch meat for the week and maybe a turkey sub for Emily and I.

Last night, after Patient First, for some strange reason I was craving Domino's Pizza, which I haven't had in a long time. Some time when I was in college was the last time, I'm sure. So it's been more than a couple of years. Well we got a medium cheese pizza. A "medium" pizza is essentially a small. And a "cheese" pizza apparently means a sauce pizza with a very conservative smattering of cheese here and there. It was easily the most disappointing part of my whole day... or perhaps the whole week. Needless to say I do not have a craving for Domino's anymore and likely never will. I almost want to buy a pizza from Scittino's, since I know it's very good. But I think two days of pizza is a bad idea.

Last week

2009-02-21T11:18:00.003-05:00

So it's been a bit since I've posted anything on here. This week was a decent week I suppose. I'm still not feeling totally normal.

Tuesday I went to work for like 7 hours I think. That was exciting.

Wednesday I had an appointment with Dr. Kasamon (more on that later), then went to work. I got to work around noon and nearly immediately felt tired. I left at 4:00, got home at 4:30 (and was still extremely tired), and passed out asleep basically until the next day.

Thursday I went to work (at like 2PM) and worked for 4.5 or so hours, didn't feel too bad... but a little tired by the end of it.

Friday I had a PET scan (no results yet), which was at 1:30PM and lasted until about 3:00PM. Then I ate some food I had brought with me (since you have to fast before a PET/CT I was rather hungry). I decided it was too late to bother going to work for just a couple of hours and came home. That was a good decision because I felt pretty terrible shortly before getting home. I went to bed at like 5:30 or so and slept for a couple of hours, then got up and felt decent later at night.

Today I am feeling pretty good so far.

One of the suggestions I had from the pharmacists at Johns Hopkins was to take colace and senna to "stimulate the bowels". I was using just colace mostly. I used colace and senna on Tuesday and Thursday night. I will say that it certainly opened my bowels up, but I think it upsets my stomach... a lot. I'm not going to take any senna anymore and see how things go naturally and hopefully I don't get the stomach pain I had been having.

A friend at work (Dave) astutely observed the mostly likely reason I have been so cold lately: I've lost a lot of weight. I weigh 153 pounds right now, which is about 30 pounds less than what I consider my "normal" weight.

As to the meeting with Dr. Kasamon, it went well. I will be using him as my primary physician for treatment. Unfortunately, the Columbia office where I see him doesn't have facilities for instant blood tests. If I wanted to be treated at the Columbia office I would have to come in (or go somewhere) the day before and have blood drawn and tested. That is a huge pain. So I will likely be going to the Tate Center, which is a big cancer center attached to Baltimore Washington Medical Center. Dr. Kasamon works out of there as well. They can do instant blood tests there. It's only about 3 miles farther away (but in the opposite direction as the Columbia office). My first treatment is Monday, March 2nd 2009. I have to go back on Wednesday to have my portable pump removed (which is also sort of annoying, but I guess chemotherapy isn't supposed to be a stroll in the park).

Emily and I are coming back to Florida from March 12th-March 15th. We're going to Gainesville this time to spent it with my family. We're hoping to come back again in the near future for the same set of days (Thursday-Sunday) and go to St. Augustine to visit all of Emily's family. Emily hasn't seen a lot of her family in a long while. I'm trying to conserve what leave I have so that I can take both of those "vacations", because after I'm out of leave I have to use this "leave bank" thing where I can still be paid even though I'm not working 40 hours a week (because of the treatment). Problem there is that I then have no leave for personal purposes, so I can't just take off a couple of days and visit Florida. *sigh* I'm sure we'll get it worked out though.

The last few days

2009-02-16T19:36:00.002-05:00

It's been a few days since I've written any updates.

Saturday was an entertaining day. Patrick and Minh Chau came over around 3PM. We just hung out and talked about stuff for a couple of hours, then we took a trip to Ellicott City. They had never been. We went to the Bean Hollow and had coffee/hot chocolate, and Emily and I had some food as well. Then we walked around a bit and looked at the crazy old buildings. Once home, we ate some of the chocolate cake the Emily and I made earlier in the day. We did the whole thing from scratch, even the icing! Never done that before. The cake was really really sweet. The icing is like marshmallow. Then we watched S12E01 of Top Gear (UK), which Pat had never seen. Don't know if he liked it as much as Emily and I do! By the end of the day I wanted to die because of all the sugar I had consumed. Other than that it was a very entertaining day. I was quite tired by the end of it. I think it was the first time I had gotten up at a decent hour (8:30 I think), actually done things, and not passed out in a "nap" for several hours in the middle of the day.

Sunday was not a good day. I just didn't feel quite right for most of the day, which kept me in bed. Then I felt nauseous again around 3:00 and took a phenagran. By about 3:30 I was feeling a good bit better and finally got up and moved around. It was altogether not a very memorable day. I was very cold as well. Even though the house is somewhat warm compared to where he had it last winter (we're keeping it between 67-70 when we're home), it still feels really cold. That's another reason I just hang out in the bedroom and fall asleep: there is a nice electric oil radiator that makes the room feel so snuggly. I think my stomach problems are compounded by staying sedentary so long. I need to get up and move around, get those stomach muscles doing something. It's like a catch-22 though.

Today, Monday, I had my appointment at Johns Hopkins with Dr. Diaz. The drive there was absolutely terrible. We went through the city rather than "all the way around" on the beltway. The thing is about driving up here: it's often faster to go "all the way around" on the highway than to take the direct route. The roads are horrendous and you get to pass endless blocks of depressing dilapidated buildings. We finally got the hospital and then had to wait for a seemingly endless amount of time for a minivan to poke around an absolutely huge parking garage before being able to park. Then we had to make our way across the JH medical campus to the building where our appointment was. It was quite a process. But after it was all done, the meetings actually went well. I didn't get any sense of hubris from any of the people we met, which was surprising and refreshing. I met several pharmacists first, then a surgical fellow, then Dr. Diaz. Dr. Diaz was very amiable and pretty much reinforced and agreed with all the other advice I have had. He said they would be more than happy to treat me (obviously) and that now that I am "in the system" I can come back whenever I need to. I think the pain in the ass associated with getting to JH is enough to deter me from going there for treatment, at least initially. I believe I am going to stick with Dr. Kasamon, at least initially, and see how things go. I am meeting him again in a couple of days where I hope to work out some of the more practical matters of the treatment (when is blood work done, how long does it take, how am I going to deal with the portable IV pump, how will it be removed, etc. etc.). It was a federal holiday so I spent the rest of the day at home (but Emily had to go to work). Which meant I ate some lunch, got bored, and then fell asleep. (doh!) I'm up and moving around now though.

Tomorrow I hope to finally get back to work. I've been in a little bit of pain today for whatever reason. When I got out of bed and started moving a bit, around 4:00 I felt a bit of pain in my back/abdomen. The abdominal pain felt a bit like constipation but I do not actually think that is what it was. I took a Tylenol around 5:00, didn't feel a whole lot better around 6:00, then took 5mg oxycodone. That appears to have done the trick. So I'll be sure to have my full array of medications at my disposal tomorrow. But if I can get up and not feel sick to my stomach, I'm going to have a "normal" day, by god!

The surgeon at JH I talked to said that six weeks a good target for "normal" feeling recovery from such a big surgery. They were all not surprised to hear of my various gastrointestinal woes and said they should all clear up in time, but I'm not all that far out from the surgery yet. I'll buy that, I think!

More information that you perhaps wanted...

2009-02-13T16:35:00.004-05:00

So a rule if you're reading this blog is not to be squeamish about anything related to medical conditions.

On that note, I think I've been constipated for the last day or two. It's actually pretty hard to tell when you have "abstract" pain in your abdomen and back. Is it the normal chronic pain, or is it your gut telling you that it is brimming over? I haven't had a good bowel movement in about 1.5-2 days now, which in "normal" circumstances wouldn't be a big deal. But my bowels still haven't really returned to normal since being hacked apart and put back together. My stools have started to harden up, which I think may be slowing things down again. I've been told by my surgeon to switch from my no-fiber diet to a high-fiber diet (now that things have healed enough). I haven't done that yet, so that's the next step. I've been taking milk of magnesia and colace in the hopes of getting things moving normally, but no real luck so far. On Wednesday I had quite a bit of narcotic pumped through me (from the anesthesia and then to dull the pain from the incisions. I think I took about 30mg of oxycodone throughout the day on top of whatever they gave me in the anesthesia). Narcotics have a way of stopping you up. So perhaps that's what is going on too.

In any case, I didn't go to work yesterday, like I said, because I was trying to stay home and heal. Well later in the day I started to feel pretty shitty. It continued through to this morning, where I felt even shittier. I got out of bed and took a shower around 8:30 with the hopes of getting in to work around 10:30-11:00. Well, I took a phenagran (anti-nausea) and 20 minutes later took 2 tbsp of milk of magnesia, then ate a couple bites of a bagel of a bit later. Then I threw it all up. That was about the end of my ambitions for the day, and I just went back to bed to try and settle my stomach down. Which is unfortunate because I was actually look forward to going into work and to not continue to hemorrhage whatever leave I have left.

When I finally got back out of bed around 3pm I felt a little better. I managed to finish the bagel and it's still down, so that is good. I called Dr. Kasamon's office and asked them to fax whatever records they had to Hopkins. I decided that I'm going to go see Dr. Diaz after all, and I'll just bring what I have and whatever he has, well hopefully it's sufficient. I think it should be for an initial consultation. We'll see how it goes. Emily has this complication of her horse's feet are being done at the same time and she already told her farrier that she was going to be there, so I don't know what will happen with that.

Patrick and Minh Chau are coming up to visit tomorrow. I think we're planning to do nothing and just watch TV and play video games. It will be a grand old time.

Also: cars. Emily and I have been idly tossing around the idea of getting a new (well, most likely a used, but new to us) car for a while now. While my mom was up visiting, my car's coolant light came on and was making one hell of a racket. She thought it was normal, which is perhaps understandable since I have been driving it around. It was making some noise which didn't sound good, but I hadn't had it looked at. But when I went out to take a look, the coolant reservoir was basically empty and the noise was like 1000% worse. Turns out the water pump was giving up the ghost. I drove it to British American auto that morning to get the noise checked out, and about 1 mile away the water pump completely failed. The car was in the red by the time I got it parked. The quote for the repair was $640 (to replace the water pump and belts, and then to see what else might be wrong). This was unfortunately within my bounds of how much I was willing to spend. They fixed it, and didn't find any other major engine problems. So I now theoretically have a working vehicle again (though I haven't driven it since).

Still though, my cars has 120k miles and burns oil (and has a good deal of normal maintenance coming due). Emily's car has like 85k miles I think and is 10 years old. Neither of us trust our cars and neither of us have ever really owned a "nice" car. So the urge is there and strong to get another.

I very much like the 5-door hatchback body style, though it isn't all that popular in the U.S. I saw tons of cars like this in the U.K. Examples include: Honda Fit, Nissan Versa, Toyota Yaris, Mazda Mazda3 hatchback, Saab 9-3 wagon, and a couple of others. I also like the idea of nice comfortable heated seats, which typically means you're looking at leather upholstery. I dislike sunroofs/moonroofs. This is a very complicating factor because they are included on basically every model that is nice enough to have heated seats. Another issue is that most of the 5-door hatchbacks I listed there are the cheapest entry-level car made by the manufacturer. They get great gas mileage, but they are still "cheap" cars. If I buy another car, I want to be able to drive at highway speeds and not listen to 50dB of road noise while I'm doing it. It also makes it hard to get all of the options I would want.

I have found that the Mazda3 s Grand Touring hatchback model actually meets all of my requirements. It gets good gas mileage (29mpg highway), is available without a sunroof/moonroof, has heated leather seats. I don't know how the ride quality is, so I guess I'd just have to test drive one. But it is kind of expensive for what I was looking to spend. Another option is the venerable Honda Accord. It's not a hatchback, but it is a nice car and I know several people who own them and they are very nice. The V6 model, which while being more than I feel like I will need in an engine, has a lot of nice options standard. Problem with the Accord is that it's basically not available without a sunroof. I think my ceiling price is also about $20k, which puts new models of both of these out of my price range (not that I'm sure I want a new car anyway). And both of these models are very desirable and thus there usually isn't a huge static selection of used cars. I've been looking.

In any case, maybe in the coming months we'll get a nice shiny new car doodad. Then I won't feel like I'm taking some kind of chance by driving a few hundred miles away for a weekend excursion.

Day after the port

2009-02-12T17:32:00.002-05:00

I stayed home from work today so that I could make sure I recovered well from surgery. I slept in, quite a bit. That was probably a good idea. I certainly feel less sore today than yesterday. But then I got pretty bored after being awake for only a couple of hours, and fell asleep again. Now I feel pretty crappy: too much sleep, I think.

I think I am going to cancel my appointment with Dr. Diaz at Johns Hopkins, mostly out of laziness on my part. I don't feel like going there all that much on Monday, and I haven't contacted any of my doctors to have my medical records faxed over there. I also don't have a copy of my most recent CT or PET scan, so I would have to go retrieve those myself tomorrow as well. I just don't have the energy or desire to deal with more health related things tomorrow and drive around and collate it all. I have quite a bit of the medical records that have been generated about me already, but I don't have an easy way to get them there ahead of time. I don't know, I really just don't have the energy. I am also not expecting anything exciting to come of the visit. There doesn't appear to be any real "super awesome" research or anything going on with this. Dr. Diaz is in charge of a clinical trial, which I took a look at. I might be eligible for it, but I might not (because of the Hodgkin's). It is a phase-II trial though, and I'm not sure I really want to be involved in a placebo controlled phase-II trial. And since the goal isn't "total cure", well I'm just not that interested. I'd rather just go with what has been shown to be effective.

I need to get back to work, I think I have exhausted my ability to sit around home doing nothing. I could probably find other things to do, but when you're sore and patched up... well there isn't much more to do.

Also, the wind has been hellacious over the last 24 hours. A huge piece of fascia board fell off the side of the house, again. It got mangled up this time too. I hate fascia board. This piece isn't getting replaced, since it's too big to buy another one to fit in my car and get it home. It doesn't seem to serve any purpose other than aesthetic and it's hard to get it actually attached to anything. Since this winter we've lost probably 25 feet of fascia board off various bits of the house and about 15-20 feet of siding off the very top-most part of the back of the house. We've got Tyvek showing. Some time I will have to get up there and put it back, with wood screws this time. (This particular piece has fallen down before, and been reattached with nails, which came out with it again.)

Had a port put in and some lymph nodes excisionally biopsied

2009-02-11T17:00:00.000-05:00

This is my first post, and it's going to be short and have no background information. Maybe that will come later.

I had outpatient surgery this morning at St. Agnes hospital. Dr. Somerville performed this surgery as well. He placed a port-a-cath (a "Power Port") on the left side of my chest, and while he was at it removed two cancerous (well, most likely) lymph nodes that were right there. Interestingly, I already had a huge scar in this exact place from my biopsy three years ago for the Hodgkin's Lymphoma. He went through the existing scar and said he'd "clean it up" so it would look better that it used to. Gotta love surgeons. This port is on the opposite side of my chest from the last one, which I had removed in November 2007.

I haven't actually looked at my chest yet and it's all covered in bandages, but it feels pretty normal (as normal as surgery can be I guess) and it should heal pretty fast. No stitches, just steristrips, so that's cool too.

I should be good to go to start chemotherapy in a week or so.

This coming week I am seeing one Dr. Diaz at John's Hopkins hospital for a consultation. On Wednesday I see Dr. Kasamon again, and unless Dr. Diaz and JH blow me out of the water, I am expecting to tell him that I'd like him (Dr. Kasamon, that is) to head up my treatment. I imagine we will then schedule a PET scan for later in the week and then start chemotherapy the following week. If I stay with Dr. Kasamon the first line treatment is going to be FOLFIRI+Bevacizumab (Avastin).

More later, perhaps.