I stopped numbering the posts. I'm posting so infrequently that it seems silly to keep track.
This post is to serve three purposes. First, since this has become my cancer blog, it's an update on the status of my cancer. Second, it's to actually remind people that yes, I occasionally post here. And third, and most importantly, it's to tell people where I am active since I'm so rarely using this blog.
So first things first... last time I posted I was almost done with chemo and feeling frustrated and tired. Good news is, I'm done with chemo, much less frustrated and tired. I still have a little pain and discomfort that's probably gonna be a lifelong companion at this point, but I was able to do two long days at Disneyland with my daughter in August, walking around in the hot sun and going on rides, and I've been walking/jogging two-three times a week to try and lose some of the weight that came back (last time I measured I was 184, which is about 35 lbs. heavier than I was at the height of my cancer). And the tests after chemo showed no residual cancer in my body.
Flash forward to a couple weeks ago, my first 3-month follow-up CT scan, and they found a little nodule on my lung. Too small to biopsy, so we did a PET scan. Turns out, it's cancer. Again. Small, much earlier than we caught it last time, but cancer. So starting in November, I get another port put in and we're doing three cycles of chemo to try and put it back into remission. With any luck I'll be cancer-free again by Christmas.
I'm hoping and expecting that since I'm not in any pain or showing any symptoms, that this will be a relatively much easier time with chemo. I expect my Mondays and Tuesdays will again be lost to sleep and fatigue on chemo weeks, but otherwise hope to keep up my normal routine.
That'll probably be the only post I make here for a while, not because I don't want to keep up with the blog but because I'm really bad at it. In the meantime, here's where you can find me.
Facebook - Unless I think you're spam, I almost always accept friend requests, and my updates are public so people can follow me. Be warned that it's mostly me posting about comics, politics (if you're not liberal-leaning it'll probably make you angry), TV and whatever random links/images I find. This is where I post most frequently, always daily and usually several times a day. I also have a Twitter feed, but I update it about as frequently as this blog.
Roguecast - I do a weekly podcast for my store, Rogues Gallery Comics & Games, that focuses on comics, games, TV and movies. http://roguesgallerytx.com/roguecast/
TV Dudes - Me and three friends podcast about a variety of TV topics on a weekly basis. http://www.loungegeeks.com/shows/tvdudes/
Loose Canon - Me and three friends podcast about comic books on a weekly basis. http://www.loungegeeks.com/shows/loose-canon-comics/
I think that's it, as far as regular stuff goes.
Showing posts with label cancer. Show all posts
Showing posts with label cancer. Show all posts
Monday, October 14, 2013
Saturday, April 27, 2013
6. The Finish Line
It's been a while since I've updated this blog with any cancer news. That's not because there hasn't been any, it's just that all my energy has been focused on these last few miles in the marathon that is fighting cancer.
As I write this, I have one more chemo appointment scheduled. On May 10, in theory, if nothing else goes wrong (more on that in a second), I will have my pump disconnected for the last time. And then it's recovery and vigilance, watching for (and hoping against) a return and getting back into the shape after the beating that chemo has administered to me, body and spirit.
I thought that the surgery was going to be the worst of it, and in many ways, it was. It was the most pain, the longest recovery, the most frustration and certainly the most permanent damage. While I got used to having a colostomy faster than I thought I would, there isn't a day that goes by that I don't notice I have the damn thing and hate it. It's a permanent change to my body that is always going to bother me. Sometimes a little, sometimes a lot. Better than being dead, but really pretty awful. And I've still got plenty of residual pain from the surgery, which I hope will eventually go away... it's been over six months, and thanks to all the radiation and chemo, I haven't fully healed up. Not to be too indelicate, but it still hurts to sit for any decent amount of time, and I still feel pain in my rear whenever I walk or stand around for too long. I hope that eventually that goes away... I honestly don't know if it will.
But the chemo follow-up after the surgery has been super hard. My immune system has more or less given up on me. I've been in the hospital numerous times. Once with a 105 degree fever which turned out to be a blood/urinary tract infection. Again about a month later with less fever, but a return of the blood/urinary tract infection that came with acute kidney failure. Acute being the key word, they're restoring to normalish now. Once for a planned blood transfusion because chemo was/is making me anemic. Once when I started bleeding from (again, not to be indelicate) my ass and it didn't stop, but that thankfully turned out to be a minor blood blister thing. Still, you don't want to feel like you're re-enacting The Shining hallway scene in you bathroom one Wednesday morning. Especially when that Wednesday morning is your daughter's birthday.
Holidays seem to have it in for me. I spent my birthday in the hospital again this year. Hopefully my cancer doesn't recognize the impending Free Comic Book Day as a holiday, because I sure as hell don't want to miss that. I already spent STAPLE! in the hospital this year, the first time I've ever missed that show.
I've been told by my oncologist that the infection could return, because my immune system is so busted. So we're keeping an eye out for fevers, hopefully I'll get through all this without one or two more hospital stays, but I wouldn't be shocked if that isn't the case.
Fighting this thing has been the hardest thing I've ever had to do, and every time I think I've turned a corner, a new wrinkle develops. Like this week. I've been having trouble with my port, which was installed in my chest back in May, for the last month or two, basically ever since the hospital stay in March. It was hurting me, and causing me pain in my shoulder. This week, before administering the chemo, the nurse decided I should get a dye test to see if the line was broken. Guess what? It was. So despite being only two more treatments from the finish line, I had to have a Picc line put in through my arm to get the rest of the chemo. And my surgeon, the one who put it in, called me up on Friday worried that I should get it taken out sooner rather than later. But he's always been a bit alarmist, and he's the one who put it in (possibly not entirely correctly) in the first place, and he's not a specialist in that area (he's a colo-rectal guy), so I'm planning on having someone else take it out.
At any rate, though, for the next two weeks I've got a line in my arm. The good news is, it works, my shoulder doesn't hurt, and it'll give blood, something my port gave up on months ago, so that means no more sticking needles in me twice a week. The bad news is, it's kind of uncomfortable, and I'm not allowed to get it wet, so I have to wrap my arm in plastic wrap and be real careful taking showers, which is another fun inconvenience.
Even once the chemo is over, there's still some healing to be done from the surgery to get me back to relatively normal. Like I said, I'm hoping to eventually be able to sit and walk around without pain, and I'd sure like it if the various peeing issues I've been having would resolve. What is it they say about bladder control? You don't miss it until it's gone? Something like that.
I'm tired. I'm frustrated. I'm ready to be done. Two weeks might as well be two months, it's been so long struggling with this. But there is a light at the end of the tunnel, and I'm looking forward to a summer of healing. With any luck, by the time we're taking the family trip in August, I'll be feeling much stronger and more like myself. Hell, I'm hoping to be more or less on my feet and ready to have fun in late June for the All-Ages Awesomeness event.
Then it's just a matter of the fear of it coming back. That's going to take me years to get over. But we'll watch and hopefully catch any return early, and not have to do anything quite so strenuous to get rid of the cancer if it tries to come back.
As I write this, I have one more chemo appointment scheduled. On May 10, in theory, if nothing else goes wrong (more on that in a second), I will have my pump disconnected for the last time. And then it's recovery and vigilance, watching for (and hoping against) a return and getting back into the shape after the beating that chemo has administered to me, body and spirit.
I thought that the surgery was going to be the worst of it, and in many ways, it was. It was the most pain, the longest recovery, the most frustration and certainly the most permanent damage. While I got used to having a colostomy faster than I thought I would, there isn't a day that goes by that I don't notice I have the damn thing and hate it. It's a permanent change to my body that is always going to bother me. Sometimes a little, sometimes a lot. Better than being dead, but really pretty awful. And I've still got plenty of residual pain from the surgery, which I hope will eventually go away... it's been over six months, and thanks to all the radiation and chemo, I haven't fully healed up. Not to be too indelicate, but it still hurts to sit for any decent amount of time, and I still feel pain in my rear whenever I walk or stand around for too long. I hope that eventually that goes away... I honestly don't know if it will.
But the chemo follow-up after the surgery has been super hard. My immune system has more or less given up on me. I've been in the hospital numerous times. Once with a 105 degree fever which turned out to be a blood/urinary tract infection. Again about a month later with less fever, but a return of the blood/urinary tract infection that came with acute kidney failure. Acute being the key word, they're restoring to normalish now. Once for a planned blood transfusion because chemo was/is making me anemic. Once when I started bleeding from (again, not to be indelicate) my ass and it didn't stop, but that thankfully turned out to be a minor blood blister thing. Still, you don't want to feel like you're re-enacting The Shining hallway scene in you bathroom one Wednesday morning. Especially when that Wednesday morning is your daughter's birthday.
Holidays seem to have it in for me. I spent my birthday in the hospital again this year. Hopefully my cancer doesn't recognize the impending Free Comic Book Day as a holiday, because I sure as hell don't want to miss that. I already spent STAPLE! in the hospital this year, the first time I've ever missed that show.
I've been told by my oncologist that the infection could return, because my immune system is so busted. So we're keeping an eye out for fevers, hopefully I'll get through all this without one or two more hospital stays, but I wouldn't be shocked if that isn't the case.
Fighting this thing has been the hardest thing I've ever had to do, and every time I think I've turned a corner, a new wrinkle develops. Like this week. I've been having trouble with my port, which was installed in my chest back in May, for the last month or two, basically ever since the hospital stay in March. It was hurting me, and causing me pain in my shoulder. This week, before administering the chemo, the nurse decided I should get a dye test to see if the line was broken. Guess what? It was. So despite being only two more treatments from the finish line, I had to have a Picc line put in through my arm to get the rest of the chemo. And my surgeon, the one who put it in, called me up on Friday worried that I should get it taken out sooner rather than later. But he's always been a bit alarmist, and he's the one who put it in (possibly not entirely correctly) in the first place, and he's not a specialist in that area (he's a colo-rectal guy), so I'm planning on having someone else take it out.
At any rate, though, for the next two weeks I've got a line in my arm. The good news is, it works, my shoulder doesn't hurt, and it'll give blood, something my port gave up on months ago, so that means no more sticking needles in me twice a week. The bad news is, it's kind of uncomfortable, and I'm not allowed to get it wet, so I have to wrap my arm in plastic wrap and be real careful taking showers, which is another fun inconvenience.
Even once the chemo is over, there's still some healing to be done from the surgery to get me back to relatively normal. Like I said, I'm hoping to eventually be able to sit and walk around without pain, and I'd sure like it if the various peeing issues I've been having would resolve. What is it they say about bladder control? You don't miss it until it's gone? Something like that.
I'm tired. I'm frustrated. I'm ready to be done. Two weeks might as well be two months, it's been so long struggling with this. But there is a light at the end of the tunnel, and I'm looking forward to a summer of healing. With any luck, by the time we're taking the family trip in August, I'll be feeling much stronger and more like myself. Hell, I'm hoping to be more or less on my feet and ready to have fun in late June for the All-Ages Awesomeness event.
Then it's just a matter of the fear of it coming back. That's going to take me years to get over. But we'll watch and hopefully catch any return early, and not have to do anything quite so strenuous to get rid of the cancer if it tries to come back.
Wednesday, January 23, 2013
3. Pain
One of the things you notice if you've got a chronic or serious illness and spend some time in hospitals is that you get the same dozen questions or so from literally everyone you meet. Every nurse, assistant or doctor will ask about falls, medicine, allergies, dutifully note it in the computer, and the next person will ask you the same thing. I know it's an insurance and safety issue, planned redundancy, but it becomes either comical or annoying (depending on one's mood) when you get the same questions over and over again.
The one that gets me, though, is that they ask if you're in any pain. Then they ask you to rate it from 1-10. I was constantly under-bidding on mine, until my wife gave me some frame of reference from when she'd seen me in various pains, and I'm better at it now.
What's kind of weird, though, is that usually the person asking can't actually do anything about it. They don't have pain meds handy, and they're not authorized to dispense them if they did. So all they can do if I say I'm at an eight is make sympathetic noises, which isn't particularly helpful.
Fortunately, my "pain management" is more or less OK. I've been in some pain in the 'ol "bathing suit area" since the surgery, and while, even with my Vicodin/Tylenol blend, it was pretty bad throughout November and December, it's starting to get better.
It does sort of suck to be in constant pain, though, even at low levels. I've got a few things wrong with me that I'd like to go ahead and heal up, and the pain going away is a big one. At this point, it's a constant companion, and part of me feels like it'll be there forever. I can't wait until I'm looking back without pain and just remembering that feeling. Maybe by the end of February or March.
The one that gets me, though, is that they ask if you're in any pain. Then they ask you to rate it from 1-10. I was constantly under-bidding on mine, until my wife gave me some frame of reference from when she'd seen me in various pains, and I'm better at it now.
What's kind of weird, though, is that usually the person asking can't actually do anything about it. They don't have pain meds handy, and they're not authorized to dispense them if they did. So all they can do if I say I'm at an eight is make sympathetic noises, which isn't particularly helpful.
Fortunately, my "pain management" is more or less OK. I've been in some pain in the 'ol "bathing suit area" since the surgery, and while, even with my Vicodin/Tylenol blend, it was pretty bad throughout November and December, it's starting to get better.
It does sort of suck to be in constant pain, though, even at low levels. I've got a few things wrong with me that I'd like to go ahead and heal up, and the pain going away is a big one. At this point, it's a constant companion, and part of me feels like it'll be there forever. I can't wait until I'm looking back without pain and just remembering that feeling. Maybe by the end of February or March.
Saturday, December 08, 2012
41. Recovery (Or How I Learned to Stop Worrying and Love Self-Catheterization but not really because Ow)
Warning: This post contains many references to my penis. I would have changed the name and called it my neener-nater or my jibbly bits or something, but we're all adults here, right? I mean, except for that one precocious 6-year-old and the dog who has taught himself to read and type, because it's the Internet and I can't see any of you, but mostly, I assume we're all adults.
When last we left our intrepid hero/cancer patient, he was miserable and gripey and just out of the hospital. We now return to our story in progress, where our intrepid hero/post-surgery patient is slightly less miserable, fairly gripey and back from another couple visits to MD Anderson in Houston.
I got home as planned and went straight into recovery mode, which mostly consisted of me lying on the couch in my office and watching movies and TV on Netflix. My cousins in California sent me gift cards to Amazon and iTunes, and I bought all of Legend of Korra on Amazon Instant Video, so Katy and I re-watched all of that. I also re-watched all of Arrested Development, Party Down and Cougar Town Season 2, got up to season four of Supernatural, and watched a few scattered movies, including several Pixar favorites with the kids.
Which all sounds like a great vacation, except that post-surgery, I'm still hurting quite a bit. We had to move the pain pills from 6 hour intervals to 4 hour intervals (I'm working on getting back to 6, currently somewhere between 4 1/2 and 5), and even then I still had a fair amount of discomfort. I also got to come home with a catheter in, which wasn't a lot of fun.
We had a return visit to MD Anderson where they removed the catheter, I was unable to pee, and they put it back in again. Then while home, I had to visit the emergency room in Round Rock a couple times due to some drainage issues with the back end, and a possible infection that we nipped in the bud with antibiotics. Again, I must commend everyone at St. David's Round Rock for being generally awesome and nice and great at their job.
So I had the catheter in for about five weeks and was generally miserable about it. Worrying that permanent damage had been done to those nerves, the bladder, etc. We went back to MD Anderson this week and I asked to go ahead and try the removal again. I was warned that if I couldn't pee on my own, the urologist didn't want to put the catheter back in, but I was going to have to do the self-catheterization, which was, if you'll recall, my worst-case scenario.
The good news is, after a too-long period of anxiousness, I did manage to pee on my own a bit. The bad news was, it wasn't enough, so I did have to learn to use a catheter on myself. The good news is, it's not as bad as I feared, more pressure than pain, and I'm able to do it. The bad news is, I'm still sticking a rubber tube up my penis every 8 hours or so. I do not recommend it.
But I do recommend it more than having a catheter in constantly. For the first time in over a month, I have nothing extra attached to me that I have to carry when I stand up. That makes me quite a bit more mobile and lots happier, and while I wasn't sure at the time, I think I'm glad I traded out from full-on catheter to occasional self-cathereterization. I'm still feeling more than a little pain in places you really don't want to feel any pain, but I'm definitely feeling like this is all a step forward.
We talked to the oncologist at MD Anderson and he concurs with my oncologist here that we'll be doing chemo starting in January to get any remaining microscopic bits of cancer and do general preventative work, even though I didn't have great results from chemo the first time around. It sounds like it may be about six months of chemo, not a lot of fun, but tolerable. He also indicated that there's a high risk of return given the size and advanced stage of my cancer, but we don't really know what that means, and hopefully it just means it may come back in 20 or 30 years. We'll be watching carefully to make sure we catch any return much earlier.
Anyway, we're at about the midpoint of recovery, I'm still in pain and resting and unable to work or even leave the house really, but hopefully I'll be able to get back to a little bit of work before the end of December, go to my friends' holiday party the weekend before Christmas, enjoy Christmas with the family, etc. That's not bad, considering that a couple of weeks ago, I was still in the "not sure this is ever going to end" mode.
When last we left our intrepid hero/cancer patient, he was miserable and gripey and just out of the hospital. We now return to our story in progress, where our intrepid hero/post-surgery patient is slightly less miserable, fairly gripey and back from another couple visits to MD Anderson in Houston.
I got home as planned and went straight into recovery mode, which mostly consisted of me lying on the couch in my office and watching movies and TV on Netflix. My cousins in California sent me gift cards to Amazon and iTunes, and I bought all of Legend of Korra on Amazon Instant Video, so Katy and I re-watched all of that. I also re-watched all of Arrested Development, Party Down and Cougar Town Season 2, got up to season four of Supernatural, and watched a few scattered movies, including several Pixar favorites with the kids.
Which all sounds like a great vacation, except that post-surgery, I'm still hurting quite a bit. We had to move the pain pills from 6 hour intervals to 4 hour intervals (I'm working on getting back to 6, currently somewhere between 4 1/2 and 5), and even then I still had a fair amount of discomfort. I also got to come home with a catheter in, which wasn't a lot of fun.
We had a return visit to MD Anderson where they removed the catheter, I was unable to pee, and they put it back in again. Then while home, I had to visit the emergency room in Round Rock a couple times due to some drainage issues with the back end, and a possible infection that we nipped in the bud with antibiotics. Again, I must commend everyone at St. David's Round Rock for being generally awesome and nice and great at their job.
So I had the catheter in for about five weeks and was generally miserable about it. Worrying that permanent damage had been done to those nerves, the bladder, etc. We went back to MD Anderson this week and I asked to go ahead and try the removal again. I was warned that if I couldn't pee on my own, the urologist didn't want to put the catheter back in, but I was going to have to do the self-catheterization, which was, if you'll recall, my worst-case scenario.
The good news is, after a too-long period of anxiousness, I did manage to pee on my own a bit. The bad news was, it wasn't enough, so I did have to learn to use a catheter on myself. The good news is, it's not as bad as I feared, more pressure than pain, and I'm able to do it. The bad news is, I'm still sticking a rubber tube up my penis every 8 hours or so. I do not recommend it.
But I do recommend it more than having a catheter in constantly. For the first time in over a month, I have nothing extra attached to me that I have to carry when I stand up. That makes me quite a bit more mobile and lots happier, and while I wasn't sure at the time, I think I'm glad I traded out from full-on catheter to occasional self-cathereterization. I'm still feeling more than a little pain in places you really don't want to feel any pain, but I'm definitely feeling like this is all a step forward.
We talked to the oncologist at MD Anderson and he concurs with my oncologist here that we'll be doing chemo starting in January to get any remaining microscopic bits of cancer and do general preventative work, even though I didn't have great results from chemo the first time around. It sounds like it may be about six months of chemo, not a lot of fun, but tolerable. He also indicated that there's a high risk of return given the size and advanced stage of my cancer, but we don't really know what that means, and hopefully it just means it may come back in 20 or 30 years. We'll be watching carefully to make sure we catch any return much earlier.
Anyway, we're at about the midpoint of recovery, I'm still in pain and resting and unable to work or even leave the house really, but hopefully I'll be able to get back to a little bit of work before the end of December, go to my friends' holiday party the weekend before Christmas, enjoy Christmas with the family, etc. That's not bad, considering that a couple of weeks ago, I was still in the "not sure this is ever going to end" mode.
Saturday, November 10, 2012
39. The Importance of a Good Book
The day I was in the hospital and got my cancer diagnosis was also the release date for Jenny Lawson's book, Let's Pretend This Never Happened. Lawson's hilarious memoir (well, sort of memoir) was a big help in helping me keep my sense of humor on that day, and I was glad to have my Kindle Fire so I could download it and read it so easily.
This week, as I suffer through the recovery from my cancer surgery, I was happy to be able to use a gift certificate from my awesome sister Wendy to buy Alan Sepinwall's book, The Revolution Was Televised, on my Kindle app for iPad. Sepinwall's an Internet friend going back to when he was writing about NYPD Blue on Usenet and I was writing reviews on the comics part of Usenet, and I've always loved his TV writing.
The book is terrific, with chapters on the breakout dramas that have redefined television in the last decade or two, including Deadwood, The Sopranos and lots more. Mixed in with Alan's analysis are thoughts from the showrunners and writers who he interviewed, and it's a fantastic read, something anyone who reads Alan's "What's Alan Watching" TV recaps will love.
On top of making me want to re-watch The Wire, Deadwood and The Sopranos (so far), it has me wishing I'd written a book like this, about a dozen influential graphic novel series, back when I was doing more writing and had more access to creators. I don't think I'm capable of that book now, but I think I could have written it then, and I wish I had. Alan has provided the exact roadmap of format I could have used.
At any rate, I highly recommend Alan's book to anyone who loves TV and Jenny's book to anyone who loves off-beat humor. And I recommend books in general when dealing with cancer, a little change in subject and change in perspective is nice. I even stumbled across a Deadwood quote in Alan's section on Deadwood that I thought was particularly apropos and inspiring in my current state, from Deadwood's Al Swearingen:
“Pain, or damage don’t end the world — or despair, or fuckin’ beatings. The world ends when you’re dead. Until then, you got more punishment in store. Stand it like a man, and give some back.”
This week, as I suffer through the recovery from my cancer surgery, I was happy to be able to use a gift certificate from my awesome sister Wendy to buy Alan Sepinwall's book, The Revolution Was Televised, on my Kindle app for iPad. Sepinwall's an Internet friend going back to when he was writing about NYPD Blue on Usenet and I was writing reviews on the comics part of Usenet, and I've always loved his TV writing.
The book is terrific, with chapters on the breakout dramas that have redefined television in the last decade or two, including Deadwood, The Sopranos and lots more. Mixed in with Alan's analysis are thoughts from the showrunners and writers who he interviewed, and it's a fantastic read, something anyone who reads Alan's "What's Alan Watching" TV recaps will love.
On top of making me want to re-watch The Wire, Deadwood and The Sopranos (so far), it has me wishing I'd written a book like this, about a dozen influential graphic novel series, back when I was doing more writing and had more access to creators. I don't think I'm capable of that book now, but I think I could have written it then, and I wish I had. Alan has provided the exact roadmap of format I could have used.
At any rate, I highly recommend Alan's book to anyone who loves TV and Jenny's book to anyone who loves off-beat humor. And I recommend books in general when dealing with cancer, a little change in subject and change in perspective is nice. I even stumbled across a Deadwood quote in Alan's section on Deadwood that I thought was particularly apropos and inspiring in my current state, from Deadwood's Al Swearingen:
“Pain, or damage don’t end the world — or despair, or fuckin’ beatings. The world ends when you’re dead. Until then, you got more punishment in store. Stand it like a man, and give some back.”
38, Post-Surgery Day Nine
So... I came on here to write a blog about books I'm reading and how that relates to my cancer that is partly recommendation for a couple of books, partly about my own writing and partly (of course) about my fight with cancer, but I realized first y'all might like an update on all the post-surgery hospital shenanigans, so that post will be next. Probably in a few minutes.
The first post out of surgery, I was pretty upbeat. I was surprised at how little pain I was in, and not even that much discomfort. Maybe all of the really worst-case scenarios were just that, and this was gonna be a relatively easy cruise back to normalcy.
Hah.
Standard warning for grossness and TMI (Too Much Information) applies here. You have been warned.
Things were going well as I went from clear liquid to full liquid to full diet. Everything was moving through my system properly, colostomy was working, I was physically pretty strong and having no trouble getting up and walking around, beyond the logistics of getting out of bed with a catheter, an IV, an epidural and three drains attached to me.
However... when I asked the nurse if there was anything I shouldn't eat or be careful about, she told me that no, I was fine to eat whatever. This same nurse would later admonish me, as if I had never asked the fucking question, that I shouldn't have eaten what I did when I was later having trouble. This is one of the many complaints I'd make about MD Anderson's nurses and follow-up care, and one of many times I was glad not to be strong and fast enough to get up and strangle someone.
So I had a breakfast of ham, potatoes and french toast (which sounds like a lot, but I didn't eat all of it, in fact most of the french toast went to Suzanne) and that seemed to settle fine, so for lunch, I got a ham and grilled cheese. What followed was one of the most painful and uncomfortable nights of my life, vying with the pain I had when my gall bladder was unknowingly infected back in '99, as the gas and my still-wounded intestines struggled with what I'd eaten.
All the easy recovery was out the window at that point. I went back to clear liquid, and had to take a couple days for my guts to stop punishing me. By Thursday, I was back on full diet, albeit being much more careful about it. Suzanne headed home to be with the kids on Wednesday, we both wished she could be in both places but we also both really wanted her to be with the kids. My parents stayed with me.
Before we got to that point, though, we had another complication. Much to my relief, we took the catheter out on Wednesday, and I was going to get to pee on my own. But my bladder/urethra, etc., having been manhandled quite a bit during surgery, was not ready yet, and I wasn't able to (as they put it) "evacuate" on my own. Well, I was, but only on the floor, only unexpectedly, and not everything in my bladder.
Let me tell you, there's a particular blend of embarrassment, frustration and pain that comes with a swelling bladder, peeing uncontrollably and a nurse who (like all the goddamned nurses) doesn't really have much to offer in the way of help other than "Have you tried walking around?" To be fair, Elijah (my nurse for that night who had also been witness to the horrible night of intestinal pain) did the right thing, called a urologist to consult, and they decided (against my strenuous, terrified objections) to put the catheter back in.
I don't know if you've ever had a catheter put into you while you're awake. If you haven't, I'll say this: It's not as bad as you'd imagine. I'll also say I don't particularly recommend it. At any rate, while I didn't want the damned thing back in, and certainly didn't want to go home with it (which I now have to, for a couple weeks), the relief it gave me was almost immediate and totally worth it. I'm just left with the fear of permanent peeing problems and having to self-catheterize myself 3-4 times a day for the rest of my life if it doesn't fix itself by the time we come back for my appointment on the 20th.
You read that right. Multiple self-catheterization. That is pretty much the big bad of all scares I had prior to surgery, and I am thrilled to death that it's still on the table, as you can imagine. I don't think it's likely, but man, if anybody's doing any praying, please mention that in particular, will ya?
Anyway, after over a week of brusque nurses waking me up for vitals and blood draws while I *desperately* needed my rest and wasn't having en easy time getting to sleep, of getting conflicting advice and information from different nurses and doctors thanks to the sheer size of MD Anderson and their less-than-impressive surgical after-care, I was discharged on Thursday afternoon to the hotel room adjoining the hospital, where I will be staying with my mom and dad until Tuesday, when I go back to get the last two drains pulled out of the wounds on my butt, and am able to leave with only one tube stuck in an unpleasant place.
There was an unpleasant misadventure on Thursday night with the MD Anderson ER, a three-hour wait for literally no help at all and the first jackass of a doctor I've felt like physically striking in this hospital, but that's a long story, and this is already a long post. Last night I was able to sleep relatively well, if not for long, I've got my computer, iPad and wi-fi and have no lack of entertainment, and Suzanne should be here in a few hours with the kids so we can spend a couple days together. Pain and discomfort is relatively minor, too, so other than the looming fear of more complications, we're in a good place and looking up from here.
The weird bright side of all this is that in all the hassle with drains, gut pain and pee fears, the colostomy turns out to be no big deal. I mean, I hate having it and wish I didn't have to, but it's the easiest thing in the world to deal with and it will have little to no real impact on my life once I've healed up everywhere else. So that's a pleasant surprise, at least.
Anyway, the takeaways from this post should be this:
1. Recovering from surgery would have been much, much better at St. David's Round Rock, where every single one of the nurses and doctors just rocked, the rooms were bigger and nicer, and I never felt like nobody really gave a shit as long as they got their scheduled vitals stuff done. Don't get me wrong, the nurses have a gross, difficult job to do, and I appreciate that, but with rare exceptions, most of them were surly and it was frustrating to be constantly told "let me know if you need anything" only to get dirty looks and attitude if you actually deigned to take them up on that offer.
2. My wife, my mom and my dad are amazing and I could not have gotten through all this without them.
3. I'd rather poop in a bag than pee in a tube.
4. I probably will not eat grilled cheese for a long, long while
The first post out of surgery, I was pretty upbeat. I was surprised at how little pain I was in, and not even that much discomfort. Maybe all of the really worst-case scenarios were just that, and this was gonna be a relatively easy cruise back to normalcy.
Hah.
Standard warning for grossness and TMI (Too Much Information) applies here. You have been warned.
Things were going well as I went from clear liquid to full liquid to full diet. Everything was moving through my system properly, colostomy was working, I was physically pretty strong and having no trouble getting up and walking around, beyond the logistics of getting out of bed with a catheter, an IV, an epidural and three drains attached to me.
However... when I asked the nurse if there was anything I shouldn't eat or be careful about, she told me that no, I was fine to eat whatever. This same nurse would later admonish me, as if I had never asked the fucking question, that I shouldn't have eaten what I did when I was later having trouble. This is one of the many complaints I'd make about MD Anderson's nurses and follow-up care, and one of many times I was glad not to be strong and fast enough to get up and strangle someone.
So I had a breakfast of ham, potatoes and french toast (which sounds like a lot, but I didn't eat all of it, in fact most of the french toast went to Suzanne) and that seemed to settle fine, so for lunch, I got a ham and grilled cheese. What followed was one of the most painful and uncomfortable nights of my life, vying with the pain I had when my gall bladder was unknowingly infected back in '99, as the gas and my still-wounded intestines struggled with what I'd eaten.
All the easy recovery was out the window at that point. I went back to clear liquid, and had to take a couple days for my guts to stop punishing me. By Thursday, I was back on full diet, albeit being much more careful about it. Suzanne headed home to be with the kids on Wednesday, we both wished she could be in both places but we also both really wanted her to be with the kids. My parents stayed with me.
Before we got to that point, though, we had another complication. Much to my relief, we took the catheter out on Wednesday, and I was going to get to pee on my own. But my bladder/urethra, etc., having been manhandled quite a bit during surgery, was not ready yet, and I wasn't able to (as they put it) "evacuate" on my own. Well, I was, but only on the floor, only unexpectedly, and not everything in my bladder.
Let me tell you, there's a particular blend of embarrassment, frustration and pain that comes with a swelling bladder, peeing uncontrollably and a nurse who (like all the goddamned nurses) doesn't really have much to offer in the way of help other than "Have you tried walking around?" To be fair, Elijah (my nurse for that night who had also been witness to the horrible night of intestinal pain) did the right thing, called a urologist to consult, and they decided (against my strenuous, terrified objections) to put the catheter back in.
I don't know if you've ever had a catheter put into you while you're awake. If you haven't, I'll say this: It's not as bad as you'd imagine. I'll also say I don't particularly recommend it. At any rate, while I didn't want the damned thing back in, and certainly didn't want to go home with it (which I now have to, for a couple weeks), the relief it gave me was almost immediate and totally worth it. I'm just left with the fear of permanent peeing problems and having to self-catheterize myself 3-4 times a day for the rest of my life if it doesn't fix itself by the time we come back for my appointment on the 20th.
You read that right. Multiple self-catheterization. That is pretty much the big bad of all scares I had prior to surgery, and I am thrilled to death that it's still on the table, as you can imagine. I don't think it's likely, but man, if anybody's doing any praying, please mention that in particular, will ya?
Anyway, after over a week of brusque nurses waking me up for vitals and blood draws while I *desperately* needed my rest and wasn't having en easy time getting to sleep, of getting conflicting advice and information from different nurses and doctors thanks to the sheer size of MD Anderson and their less-than-impressive surgical after-care, I was discharged on Thursday afternoon to the hotel room adjoining the hospital, where I will be staying with my mom and dad until Tuesday, when I go back to get the last two drains pulled out of the wounds on my butt, and am able to leave with only one tube stuck in an unpleasant place.
There was an unpleasant misadventure on Thursday night with the MD Anderson ER, a three-hour wait for literally no help at all and the first jackass of a doctor I've felt like physically striking in this hospital, but that's a long story, and this is already a long post. Last night I was able to sleep relatively well, if not for long, I've got my computer, iPad and wi-fi and have no lack of entertainment, and Suzanne should be here in a few hours with the kids so we can spend a couple days together. Pain and discomfort is relatively minor, too, so other than the looming fear of more complications, we're in a good place and looking up from here.
The weird bright side of all this is that in all the hassle with drains, gut pain and pee fears, the colostomy turns out to be no big deal. I mean, I hate having it and wish I didn't have to, but it's the easiest thing in the world to deal with and it will have little to no real impact on my life once I've healed up everywhere else. So that's a pleasant surprise, at least.
Anyway, the takeaways from this post should be this:
1. Recovering from surgery would have been much, much better at St. David's Round Rock, where every single one of the nurses and doctors just rocked, the rooms were bigger and nicer, and I never felt like nobody really gave a shit as long as they got their scheduled vitals stuff done. Don't get me wrong, the nurses have a gross, difficult job to do, and I appreciate that, but with rare exceptions, most of them were surly and it was frustrating to be constantly told "let me know if you need anything" only to get dirty looks and attitude if you actually deigned to take them up on that offer.
2. My wife, my mom and my dad are amazing and I could not have gotten through all this without them.
3. I'd rather poop in a bag than pee in a tube.
4. I probably will not eat grilled cheese for a long, long while
Thursday, November 01, 2012
37. Post-Surgery Day One
So the surgery was yesterday. Halloween.
We got here late Sunday night because our first appointment on Monday was at 6:30 AM. This time out, we're staying at the Jones Rotary House, which is attached by skyway to MD Anderson, and man... we should have been staying there every time. We had a ton of appointments on Monday, we were there until 7 PM, and it was nice being able to go "home" between some of the appointments and rest instead of having to sit in uncomfortable waiting rooms all that time.
We had dinner at Goode BBQ, a decent if not great BBQ place on Monday night. As it turned out, that was my last meal for... a while. Tuesday I found out I wasn't allowed to eat anything else before the surgery, and today post-surgery I've been told I won't even get on a liquid diet until the weekend. A little foreknowledge and we probably would have gone for a fancier meal. Ah, well. I did have T&S Seafood dim sum and Deckhand Oyster Bar crawfish etouffee before leaving Austin.
The prep included drinking 48-64 ounces of potassium chloride in about an hour on Tuesday night. I flavored it with lemon-lime, so it was of course delicious. This is in no way sarcastic.But I got through it with the help of Life Savers, applied immediately after each 8 ounce glass, drunk every ten minutes.
The surgery check-in was at 6 AM. So of course, since I'd been napping much of Tuesday thanks to exhaustion from Monday, I couldn't get to sleep. Went to bed around midnight, finally got to sleep sometime after 2 AM. Fortunately, being sleepy for surgery is kind of a bonus.
They checked us in relatively quickly, but then I sat in the waiting room in bed for about two hours before signing the anesthesiologist consent form (the last of many... I agreed to a lot of scary possibilities before this surgery was underway) and was taken in to get an epidural installed. Installed? Is that the right word? Anyway, that was done, they put a mask over my face and that's the last thing I remember...
Until I woke up groggy in the recovery room, in much less pain than I expected, and ater what seemed like a long time, they finally asked if I was ready to see my wife and parents. They came in, said a quick hello and told me that it was 10 PM. Which puts the surgery time, for those keeping track, at roughly 12 hours.
It was a long surgery, but by all accounts a successful one. The surgeon is optimistic that he got all the cancer, the plastic surgeon seems pleased with his work as do the many doctors and nurses who have looked at my ass today, and miraculously, I'm not in much pain. I've even gotten up and walked a couple times, albeit while holding onto the wheely thing that carries my medicine around with me.
I'm not a particularly pretty sight at the moment. I've got drains in my legs, a new colostomy that I get to learn how to use tomorrow (whee!) and various things plugged into me. But I'm feeling relatively OK, and the worst part is now over, and some of the more scary things presented as worst-case scenarios didn't come to pass. Life is going to take a little adjusting to with the side effects of the surgery, but overall I'd call it a success.
Now I'm here in the hospital for another 7-9 days, headed back to Austin after that. They tell me I'll be fully recovered in about two months' time, so hopefully by Christmas. Although I'll start chemo again in November, so I won't be 100% again until some time next year. Maybe in time for my birthday.
We got here late Sunday night because our first appointment on Monday was at 6:30 AM. This time out, we're staying at the Jones Rotary House, which is attached by skyway to MD Anderson, and man... we should have been staying there every time. We had a ton of appointments on Monday, we were there until 7 PM, and it was nice being able to go "home" between some of the appointments and rest instead of having to sit in uncomfortable waiting rooms all that time.
We had dinner at Goode BBQ, a decent if not great BBQ place on Monday night. As it turned out, that was my last meal for... a while. Tuesday I found out I wasn't allowed to eat anything else before the surgery, and today post-surgery I've been told I won't even get on a liquid diet until the weekend. A little foreknowledge and we probably would have gone for a fancier meal. Ah, well. I did have T&S Seafood dim sum and Deckhand Oyster Bar crawfish etouffee before leaving Austin.
The prep included drinking 48-64 ounces of potassium chloride in about an hour on Tuesday night. I flavored it with lemon-lime, so it was of course delicious. This is in no way sarcastic.But I got through it with the help of Life Savers, applied immediately after each 8 ounce glass, drunk every ten minutes.
The surgery check-in was at 6 AM. So of course, since I'd been napping much of Tuesday thanks to exhaustion from Monday, I couldn't get to sleep. Went to bed around midnight, finally got to sleep sometime after 2 AM. Fortunately, being sleepy for surgery is kind of a bonus.
They checked us in relatively quickly, but then I sat in the waiting room in bed for about two hours before signing the anesthesiologist consent form (the last of many... I agreed to a lot of scary possibilities before this surgery was underway) and was taken in to get an epidural installed. Installed? Is that the right word? Anyway, that was done, they put a mask over my face and that's the last thing I remember...
Until I woke up groggy in the recovery room, in much less pain than I expected, and ater what seemed like a long time, they finally asked if I was ready to see my wife and parents. They came in, said a quick hello and told me that it was 10 PM. Which puts the surgery time, for those keeping track, at roughly 12 hours.
It was a long surgery, but by all accounts a successful one. The surgeon is optimistic that he got all the cancer, the plastic surgeon seems pleased with his work as do the many doctors and nurses who have looked at my ass today, and miraculously, I'm not in much pain. I've even gotten up and walked a couple times, albeit while holding onto the wheely thing that carries my medicine around with me.
I'm not a particularly pretty sight at the moment. I've got drains in my legs, a new colostomy that I get to learn how to use tomorrow (whee!) and various things plugged into me. But I'm feeling relatively OK, and the worst part is now over, and some of the more scary things presented as worst-case scenarios didn't come to pass. Life is going to take a little adjusting to with the side effects of the surgery, but overall I'd call it a success.
Now I'm here in the hospital for another 7-9 days, headed back to Austin after that. They tell me I'll be fully recovered in about two months' time, so hopefully by Christmas. Although I'll start chemo again in November, so I won't be 100% again until some time next year. Maybe in time for my birthday.
Monday, October 15, 2012
36. The Upside of Cancer
I am not, by nature, an optimist. You might think differently having read my cancer blogs, where I've poked fun and generally tried to keep a happy face on about the cancer, but that's really just my nature as a smart-ass. Anyone who knows me knows that I'm at best a realist, at worst a pessimist.
So it's kind of ludicrous for me (or anyone, really) to post a blog about the glass half-full part of having cancer. A disease that could potentially kill me, has certainly caused me a lot of pain, and is about to cause me a lot more, not to mention some pretty significant lifestyle changes, beyond the significant ones I've already made. I mean, I'm down from working 40-50 hours a week at a job that I love to about 20, at best. I don't get to go out as much because I'm not often feeling up to it, I've definitely become more of a social shut-in than I used to be. And my change in diet, while not spectacular, was definitely something I noticed.
However... I've never more clearly felt the love of friends and family than when I learned about this disease, or when I've talked to people about getting through it. And my friends and family were never not demonstrative. I knew just how much my parents, my sister, my extended family loved me, and how much I loved them. I had little doubt that I had somehow lucked into this huge, extended group of friends, both locally here in Austin, spread out in the comics community and the various Internet groups I've been a part of, and that there were way, way too many people in my life that I'd be willing to take a bullet for. The odds were getting good I was going to have to take a bullet... fortunately, most of my friends are too nice for anyone to take a shot at.
But I've never had more activity on my Facebook page than when I posted on my birthday from the hospital. It should have been the worst day of my life, but it was hard to be glum or angry about the diagnosis when I had so much support so visible to me. I had *104* comments on my post when I revealed the diagnosis, and a flood of support. Some of my artist friends drew me stuff (hell, so did some of my non-artist friends, a bunch of them made me an awesome get-well gigantic poster card), my friends at the LEOG helped me laugh my way through it with the most morbidly hilarious (and amazing NSFW) podcast ever and I was just overwhelmed by the amount of support.
The latest development is that my friend Grant Davis has set up a donations site for me to help cover the cost of surgery (and next year's chemo). It was a generous and really unexpected gesture, and has really taken off. I'm posting a link here just so nobody emails me and asks, but please... don't feel like you have to give, especially if you're family and you've already given me more than enough help throughout all this. I mention this not to point out the campaign but because I want to single out how generous my friends are.
I don't talk much about the money side of all this. The truth is, we're lucky. Suzanne's always been smarter than me about this, and so we've been paying for private health insurance for years, even though I never got sick. (Turns out I was saving up for a big one.) I'd gripe occasionally about hundreds of dollars a month for a plan that didn't really cover my doctor visits or anything else minor, our deductible was so high, and she'd remind me it was catastrophe insurance, so we wouldn't go broke if we got cancer or something.
My friends and family are amazing and generous. My wife? A goddamned visionary genius.
So when the hospital bills started coming in (and let me tell you, chemo and radiation treatments are *not* cheap), we were fortunate that the insurance paid for a lot of it. Our deductible is high - I'm not gonna get into specifics, but we're out-of-pocket in the low five figures - but thanks to the store being fairly profitable and help from my folks and Suzanne's folks, we've managed to do OK. Mostly I look at the money we spent on my healthcare and think "I could have put a sizable down-payment on a new car." Then I want to punch my cancer in its face again.
There are folks in much more dire straits than us. Folks who couldn't afford screening or treatment who died from a preventable, treatable cancer. Folks whose health insurance dropped them when they got cancer. We were lucky enough to be in a time when that couldn't happen, and lucky enough to have money so that it didn't have to happen.
Next year the deductible will kick in again, and that means another big lump payment, but thanks to the donations we've already gotten and money from my parents and in-laws, I don't have to worry about it. I can't imagine having to worry about the illness, the pain, the surgery and its after-effects *and* money at the same time. So the help from everyone who has donated, if you're reading this? It is so very appreciated.
But I also want to say that for everyone who's had a kind word, who has offered me support, and there are so many I couldn't possibly name them all, I can't thank you enough. I'm not saying I'd take the cancer if I had the choice, but the upside of going through all this is getting to learn just how much I'm appreciated and loved. I'm not looking forward to the surgery and the recovery - to be honest, it scares me more than just about anything I've ever done - but the support of my friends and family makes it something I know I can get through.
So it's kind of ludicrous for me (or anyone, really) to post a blog about the glass half-full part of having cancer. A disease that could potentially kill me, has certainly caused me a lot of pain, and is about to cause me a lot more, not to mention some pretty significant lifestyle changes, beyond the significant ones I've already made. I mean, I'm down from working 40-50 hours a week at a job that I love to about 20, at best. I don't get to go out as much because I'm not often feeling up to it, I've definitely become more of a social shut-in than I used to be. And my change in diet, while not spectacular, was definitely something I noticed.
However... I've never more clearly felt the love of friends and family than when I learned about this disease, or when I've talked to people about getting through it. And my friends and family were never not demonstrative. I knew just how much my parents, my sister, my extended family loved me, and how much I loved them. I had little doubt that I had somehow lucked into this huge, extended group of friends, both locally here in Austin, spread out in the comics community and the various Internet groups I've been a part of, and that there were way, way too many people in my life that I'd be willing to take a bullet for. The odds were getting good I was going to have to take a bullet... fortunately, most of my friends are too nice for anyone to take a shot at.
But I've never had more activity on my Facebook page than when I posted on my birthday from the hospital. It should have been the worst day of my life, but it was hard to be glum or angry about the diagnosis when I had so much support so visible to me. I had *104* comments on my post when I revealed the diagnosis, and a flood of support. Some of my artist friends drew me stuff (hell, so did some of my non-artist friends, a bunch of them made me an awesome get-well gigantic poster card), my friends at the LEOG helped me laugh my way through it with the most morbidly hilarious (and amazing NSFW) podcast ever and I was just overwhelmed by the amount of support.
The latest development is that my friend Grant Davis has set up a donations site for me to help cover the cost of surgery (and next year's chemo). It was a generous and really unexpected gesture, and has really taken off. I'm posting a link here just so nobody emails me and asks, but please... don't feel like you have to give, especially if you're family and you've already given me more than enough help throughout all this. I mention this not to point out the campaign but because I want to single out how generous my friends are.
I don't talk much about the money side of all this. The truth is, we're lucky. Suzanne's always been smarter than me about this, and so we've been paying for private health insurance for years, even though I never got sick. (Turns out I was saving up for a big one.) I'd gripe occasionally about hundreds of dollars a month for a plan that didn't really cover my doctor visits or anything else minor, our deductible was so high, and she'd remind me it was catastrophe insurance, so we wouldn't go broke if we got cancer or something.
My friends and family are amazing and generous. My wife? A goddamned visionary genius.
So when the hospital bills started coming in (and let me tell you, chemo and radiation treatments are *not* cheap), we were fortunate that the insurance paid for a lot of it. Our deductible is high - I'm not gonna get into specifics, but we're out-of-pocket in the low five figures - but thanks to the store being fairly profitable and help from my folks and Suzanne's folks, we've managed to do OK. Mostly I look at the money we spent on my healthcare and think "I could have put a sizable down-payment on a new car." Then I want to punch my cancer in its face again.
There are folks in much more dire straits than us. Folks who couldn't afford screening or treatment who died from a preventable, treatable cancer. Folks whose health insurance dropped them when they got cancer. We were lucky enough to be in a time when that couldn't happen, and lucky enough to have money so that it didn't have to happen.
Next year the deductible will kick in again, and that means another big lump payment, but thanks to the donations we've already gotten and money from my parents and in-laws, I don't have to worry about it. I can't imagine having to worry about the illness, the pain, the surgery and its after-effects *and* money at the same time. So the help from everyone who has donated, if you're reading this? It is so very appreciated.
But I also want to say that for everyone who's had a kind word, who has offered me support, and there are so many I couldn't possibly name them all, I can't thank you enough. I'm not saying I'd take the cancer if I had the choice, but the upside of going through all this is getting to learn just how much I'm appreciated and loved. I'm not looking forward to the surgery and the recovery - to be honest, it scares me more than just about anything I've ever done - but the support of my friends and family makes it something I know I can get through.
Wednesday, September 19, 2012
35. The Big One
Warning: Many references to my butt in this post. In fact, this may be the grossest, most TMI post about my rectal cancer that I've had. I do apologize.
Been a while since I posted, sorry about that. I'm also sorry this has become "Randy's Cancer Blog" but it's the best way to keep up with family that aren't on my Facebook (and you guys don't want to be, it's mostly politics, inappropriate pictures, cursing and talk about comic books and food) but I guess as topics go, it's kind of one you need to cover.
This week was the big trip to Houston. Well, OK, technically October is the Big Trip to Houston for the surgery, the whole reason we're going to MD Anderson in the first place. But this was the "here's all the scary stuff about the surgery you were already terrified of, and it's going to be worse than you thought" trip.
But before that... and I gotta warn ya, this is gonna get gross (again)... I had another complication. The stupid abcess that got infected back in April and landed me in the hospital just in time for my cancer diagnosis flared up for the third time, and I had to go in on Wednesday for a quick surgery so they could slice open my butt. Which is nobody's idea of fun.
OK, that's not true, this is the Internet, and I'm sure it's somebody's idea of fun. But if it's your idea of fun, for God's sake, don't tell me. I don't want to know.
Long story short, it went Friday-Saturday-Sunday increasing amounts of pain and attempts to deny that it was infected and I needed surgery, Monday visit to Texas Oncology and admitting that I needed the surgery but hoping it could be quick and easy, Wednesday having it done and it was relatively quick and relatively easy, but it still hurt like hell. Then Friday-Saturday-Sunday increasing amounts of pain, worrying that it was still infected, until thankfully on Monday, right before the trip to Houston, it started feeling better and we were sure the slow healing was because I was still irradiated, which slows down the healing process.
Negating everything comics have ever taught me, by the way.
So Monday we drove down to Houston. I don't know how many of you have ridden in a car for three hours with a hole in your butt, but I don't recommend it. I survived the trip, though, and Tuesday was the day to meet with everybody. Thankfully, since I have an irradiated butt, they weren't poking and prodding too much, and the soreness I had was down to sitting for a long time in uncomfortable chairs and walking from place to place.
Our first appointment was at 9:15 with genetic counselors, but they were running late, and that threw the whole schedule out of whack, so we were late the whole day. Which meant more waiting. We finally got out of there about 3:30. During that time, I learned that I probably have genetic damage that caused the cancer, and that further testing might prove it for sure, but if the testing comes back negative, we can never be sure, so I'm going to have to act like I have the genetic disorder. In other words, colonoscopies every year! Hooray! And our insurance doesn't cover them! Hooray!
Next up was the meeting with the plastic surgeon, who explained how they're going to reshape my butt after the surgeon removes a great deal of it on Halloween. I'm not kidding, he used the phrase "smoking crater" to describe it at least half a dozen times. And they talked about taking muscles out of my stomach, and the possibility of also having to take muscles out of my leg if there isn't enough in the stomach. So that was scary. I also found out that recovery is going to be about 7-9 days (in Houston!) and that I'm gonna have drains in me, and all this extra stuff, and it sounds like I won't be in decent shape until probably after Thanksgiving. I'll have to go home, mess with drains and colostomies (more on that in a second), go back and have the drains taken out, make sure everything's healing, hope I'm not in the 10-15% that develops a hernia, etc. etc.
Then it was off to talk to the actual colorectal surgeon. And maybe it's just a surgeon thing, but I swear to God every time I talk to a colorectal surgeon the news gets worse. I was already dreading the operation, but this thing is gonna hurt like hell, totally reshape my body and wind up with a lot of gross after-effects. The word "catheter" was mentioned casually, but fortunately so was the word "epidural." Other fun words include "erectile function" and "entire anus removed." We don't know yet how much the radiation got, and we won't until just before the surgery, but the possible side effects of the surgery could be pretty huge if it didn't shrink the tumor enough and a lot of stuff has to come out to be sure we get the cancer.
Then we went to talk to the colostomy nurse. If it wasn't happening to me, I'd find it darkly hilarious that she tried so hard to convince me that having a colostomy wasn't going to be a big deal. That it's really just having a butt in the front that you have to empty out. Like that isn't a big deal. The brochure about colostomy is equally hilarious to me, it looks like a pamphlet for a community college, except instead of getting a 2-year degree in A/C repair, it's about getting a hole in your stomach that you poop into a bag out of.
On the upside there were two things. One was that we had to grab something to eat at the cafeteria while were there, and I got taco soup, which was *full* of beans. I risked it, even though that's forbidden on the low-residue diet, and had no bad reactions. So I may get to relax the diet a bit and eat what I want for the next month. Carefully, of course, the last thing I want is more digestive problems.
The other is that we found an awesome Cajun place, Crescent City Beignets, thanks to Urbanspoon, and I got gumbo and beignets and Suzanne had a muffaleta and beignet and they were delicious.
Wednesday was my blood draw and meeting with the oncologist, which was kind of a frustrating day. We're doing all our chemo/radiation here in Austin, and so the oncologist always checks in, chats for five minutes and leaves. It's always, always a waste of his time and ours, and that meant another night in the hotel room. If we could have just done the blood draw at the beginning or end of the day on Tuesday, we could have gotten the hell out of Houston a day earlier.
The drive back was a little rough, since I was sore from all the walking/sitting on Tuesday, but I got a lot of sleep on the way back and once I got home and am now feeling much better in general. With any luck, the slice will heal up, the radiation will heal and I'll get roughly a month of being relatively normal. No chemo, no radiation, a minimum of doctor's appointments. I intend to eat, drink and spend as much time with friends as possible in that month, because after the surgery, I think I'm going to be a grumpy bastard for a while, and I know I'm not gonna enjoy November and December much. With any luck, the last round of chemo after surgery won't be too bad (even though it's gonna be a financial blow, since the insurance deductible will reset in January, meaning we'll probably be in for another $10-20K... we've got it in various savings/loans, but we'd rather have the money for, y'know, the kid's college or something) and I'll be adjusted to the colostomy and healed up and cancer-free in time for my 42nd birthday in April. But that now seems like a long way in the distance, and October 29th (the start of surgery hell week) looks awfully close, even though it's more than a month away.
But... big picture, all of this is in service to getting rid of a disease that could kill me. So the side effects and pain, terrible though they are, will hopefully fade into memory as I get another dozen years or more to spend with my friends and family.
Even if those years are spent pooping into a bag. Which, again... if that's your idea of fun, for the love of God, don't tell me.
Been a while since I posted, sorry about that. I'm also sorry this has become "Randy's Cancer Blog" but it's the best way to keep up with family that aren't on my Facebook (and you guys don't want to be, it's mostly politics, inappropriate pictures, cursing and talk about comic books and food) but I guess as topics go, it's kind of one you need to cover.
This week was the big trip to Houston. Well, OK, technically October is the Big Trip to Houston for the surgery, the whole reason we're going to MD Anderson in the first place. But this was the "here's all the scary stuff about the surgery you were already terrified of, and it's going to be worse than you thought" trip.
But before that... and I gotta warn ya, this is gonna get gross (again)... I had another complication. The stupid abcess that got infected back in April and landed me in the hospital just in time for my cancer diagnosis flared up for the third time, and I had to go in on Wednesday for a quick surgery so they could slice open my butt. Which is nobody's idea of fun.
OK, that's not true, this is the Internet, and I'm sure it's somebody's idea of fun. But if it's your idea of fun, for God's sake, don't tell me. I don't want to know.
Long story short, it went Friday-Saturday-Sunday increasing amounts of pain and attempts to deny that it was infected and I needed surgery, Monday visit to Texas Oncology and admitting that I needed the surgery but hoping it could be quick and easy, Wednesday having it done and it was relatively quick and relatively easy, but it still hurt like hell. Then Friday-Saturday-Sunday increasing amounts of pain, worrying that it was still infected, until thankfully on Monday, right before the trip to Houston, it started feeling better and we were sure the slow healing was because I was still irradiated, which slows down the healing process.
Negating everything comics have ever taught me, by the way.
So Monday we drove down to Houston. I don't know how many of you have ridden in a car for three hours with a hole in your butt, but I don't recommend it. I survived the trip, though, and Tuesday was the day to meet with everybody. Thankfully, since I have an irradiated butt, they weren't poking and prodding too much, and the soreness I had was down to sitting for a long time in uncomfortable chairs and walking from place to place.
Our first appointment was at 9:15 with genetic counselors, but they were running late, and that threw the whole schedule out of whack, so we were late the whole day. Which meant more waiting. We finally got out of there about 3:30. During that time, I learned that I probably have genetic damage that caused the cancer, and that further testing might prove it for sure, but if the testing comes back negative, we can never be sure, so I'm going to have to act like I have the genetic disorder. In other words, colonoscopies every year! Hooray! And our insurance doesn't cover them! Hooray!
Next up was the meeting with the plastic surgeon, who explained how they're going to reshape my butt after the surgeon removes a great deal of it on Halloween. I'm not kidding, he used the phrase "smoking crater" to describe it at least half a dozen times. And they talked about taking muscles out of my stomach, and the possibility of also having to take muscles out of my leg if there isn't enough in the stomach. So that was scary. I also found out that recovery is going to be about 7-9 days (in Houston!) and that I'm gonna have drains in me, and all this extra stuff, and it sounds like I won't be in decent shape until probably after Thanksgiving. I'll have to go home, mess with drains and colostomies (more on that in a second), go back and have the drains taken out, make sure everything's healing, hope I'm not in the 10-15% that develops a hernia, etc. etc.
Then it was off to talk to the actual colorectal surgeon. And maybe it's just a surgeon thing, but I swear to God every time I talk to a colorectal surgeon the news gets worse. I was already dreading the operation, but this thing is gonna hurt like hell, totally reshape my body and wind up with a lot of gross after-effects. The word "catheter" was mentioned casually, but fortunately so was the word "epidural." Other fun words include "erectile function" and "entire anus removed." We don't know yet how much the radiation got, and we won't until just before the surgery, but the possible side effects of the surgery could be pretty huge if it didn't shrink the tumor enough and a lot of stuff has to come out to be sure we get the cancer.
Then we went to talk to the colostomy nurse. If it wasn't happening to me, I'd find it darkly hilarious that she tried so hard to convince me that having a colostomy wasn't going to be a big deal. That it's really just having a butt in the front that you have to empty out. Like that isn't a big deal. The brochure about colostomy is equally hilarious to me, it looks like a pamphlet for a community college, except instead of getting a 2-year degree in A/C repair, it's about getting a hole in your stomach that you poop into a bag out of.
On the upside there were two things. One was that we had to grab something to eat at the cafeteria while were there, and I got taco soup, which was *full* of beans. I risked it, even though that's forbidden on the low-residue diet, and had no bad reactions. So I may get to relax the diet a bit and eat what I want for the next month. Carefully, of course, the last thing I want is more digestive problems.
The other is that we found an awesome Cajun place, Crescent City Beignets, thanks to Urbanspoon, and I got gumbo and beignets and Suzanne had a muffaleta and beignet and they were delicious.
Wednesday was my blood draw and meeting with the oncologist, which was kind of a frustrating day. We're doing all our chemo/radiation here in Austin, and so the oncologist always checks in, chats for five minutes and leaves. It's always, always a waste of his time and ours, and that meant another night in the hotel room. If we could have just done the blood draw at the beginning or end of the day on Tuesday, we could have gotten the hell out of Houston a day earlier.
The drive back was a little rough, since I was sore from all the walking/sitting on Tuesday, but I got a lot of sleep on the way back and once I got home and am now feeling much better in general. With any luck, the slice will heal up, the radiation will heal and I'll get roughly a month of being relatively normal. No chemo, no radiation, a minimum of doctor's appointments. I intend to eat, drink and spend as much time with friends as possible in that month, because after the surgery, I think I'm going to be a grumpy bastard for a while, and I know I'm not gonna enjoy November and December much. With any luck, the last round of chemo after surgery won't be too bad (even though it's gonna be a financial blow, since the insurance deductible will reset in January, meaning we'll probably be in for another $10-20K... we've got it in various savings/loans, but we'd rather have the money for, y'know, the kid's college or something) and I'll be adjusted to the colostomy and healed up and cancer-free in time for my 42nd birthday in April. But that now seems like a long way in the distance, and October 29th (the start of surgery hell week) looks awfully close, even though it's more than a month away.
But... big picture, all of this is in service to getting rid of a disease that could kill me. So the side effects and pain, terrible though they are, will hopefully fade into memory as I get another dozen years or more to spend with my friends and family.
Even if those years are spent pooping into a bag. Which, again... if that's your idea of fun, for the love of God, don't tell me.
Tuesday, August 21, 2012
34. A Flame about this high
Also, radiation.
Wow, two in-jokes deep right at the start. That's a long way to go to avoid using the word "ass" on a blog where I drop the f bomb pretty regular. Anyway, don't worry if you don't understand the title or what I'm talking about, I'll explain at the end of this post.
Anyway, yes, as we near the finish line of the radiation/chemo stage of fighting my stubborn ass tumor, I have gotten a sunburn in what doctors call "the bathing suit area." OK, they don't call it that. But that's what it is. I'm red and peel-y all around my nethers.
Which isn't a great deal of fun, but it's not as bad as I feared when I heard about these side effects at the beginning. For one thing, I haven't had it long, which makes it easier to handle. For another, it's not quite as bad as a real sunburn. I don't have constant pain, I can sit and move pretty comfortably, it's just that if I move or something rubs up against the wrong area I get that "yeowch" like your jackass "funny friend" slapping your sunburned back. Except instead of back, substitute "sensitive nether regions."
This has made certain everyday tasks, like putting on pants or going to the bathroom (a more frequent occasion thanks to the tumor/treatment) more of an adventure than it might ordinarily be.
However, as I keep saying, and I'm really not a glass half-full guy in general, but when it comes to cancer I guess I am, if this is the worst I get, it really could be a lot worse. What's a little genital sunburn and extra naps between friends? The doctor keeps telling me I'm handling the treatment really well, and I like being told I'm doing well at something, even if that something is just "not getting horrible side effects," which honestly is kind of a thing I'd want to be good at regardless.
Anyway, six sessions left over the next two weeks, and then it's on to the next phase, the horribly invasive and possibly life-changing massive surgery to take this tumor bitch out. As you can tell, I'm a little nervous about that one, and not just because it means another trip to Houston.
Two trips, actually. In mid-September we've got a two-day trip to talk and evaluate, with the promise of no jamming any cameras up inside me because my butt will still be hurting from the radiation (yay!). And talking to their "genetics counselors" which sounds like they want to talk about my emerging mutant powers but in fact is about my having possibly tested possible for "lynch syndrome", which basically means that it's more likely this is a hereditary thing I've given to my kids (yay again!) But the first test they got was negative, and literally *no one* in my family has had cancer before, so either I'm the first case or they got it wrong.
If I'm the first case, it means that "lynch syndrome" is my mutant power. I would *so* much rather have had teleportation, invisibility or a healing factor.
Anyway, the second trip is for the surgery, which has been scheduled for (I kid you not) Halloween. Hopefully the surgeon won't dress up in a scary clown costume or something. I'm kinda bummed to miss out on trick or treating, but more bummed to have someone sawing into my ass to take things out, so y'know... priorities. No idea how long I'll be in Houston to recover, but I'm sure it'll be longer than I want. With any luck, though, the surgery will get the cancer, and the follow-up chemo will get rid of any lingering microcopic bits and in April, we'll be able to write all this off as the shittiest 41st birthday present ever and move on.
OK... to explain the title. There's an old joke where a guy says "You know what burns my ass?" (an expression that means you know what bothers me?) and the other guy says "No, what?" and he says, holding his hand up to his ass, "A flame about this high."
See? Totally worth the explanation. We all laughed, right?
Wow, two in-jokes deep right at the start. That's a long way to go to avoid using the word "ass" on a blog where I drop the f bomb pretty regular. Anyway, don't worry if you don't understand the title or what I'm talking about, I'll explain at the end of this post.
Anyway, yes, as we near the finish line of the radiation/chemo stage of fighting my stubborn ass tumor, I have gotten a sunburn in what doctors call "the bathing suit area." OK, they don't call it that. But that's what it is. I'm red and peel-y all around my nethers.
Which isn't a great deal of fun, but it's not as bad as I feared when I heard about these side effects at the beginning. For one thing, I haven't had it long, which makes it easier to handle. For another, it's not quite as bad as a real sunburn. I don't have constant pain, I can sit and move pretty comfortably, it's just that if I move or something rubs up against the wrong area I get that "yeowch" like your jackass "funny friend" slapping your sunburned back. Except instead of back, substitute "sensitive nether regions."
This has made certain everyday tasks, like putting on pants or going to the bathroom (a more frequent occasion thanks to the tumor/treatment) more of an adventure than it might ordinarily be.
However, as I keep saying, and I'm really not a glass half-full guy in general, but when it comes to cancer I guess I am, if this is the worst I get, it really could be a lot worse. What's a little genital sunburn and extra naps between friends? The doctor keeps telling me I'm handling the treatment really well, and I like being told I'm doing well at something, even if that something is just "not getting horrible side effects," which honestly is kind of a thing I'd want to be good at regardless.
Anyway, six sessions left over the next two weeks, and then it's on to the next phase, the horribly invasive and possibly life-changing massive surgery to take this tumor bitch out. As you can tell, I'm a little nervous about that one, and not just because it means another trip to Houston.
Two trips, actually. In mid-September we've got a two-day trip to talk and evaluate, with the promise of no jamming any cameras up inside me because my butt will still be hurting from the radiation (yay!). And talking to their "genetics counselors" which sounds like they want to talk about my emerging mutant powers but in fact is about my having possibly tested possible for "lynch syndrome", which basically means that it's more likely this is a hereditary thing I've given to my kids (yay again!) But the first test they got was negative, and literally *no one* in my family has had cancer before, so either I'm the first case or they got it wrong.
If I'm the first case, it means that "lynch syndrome" is my mutant power. I would *so* much rather have had teleportation, invisibility or a healing factor.
Anyway, the second trip is for the surgery, which has been scheduled for (I kid you not) Halloween. Hopefully the surgeon won't dress up in a scary clown costume or something. I'm kinda bummed to miss out on trick or treating, but more bummed to have someone sawing into my ass to take things out, so y'know... priorities. No idea how long I'll be in Houston to recover, but I'm sure it'll be longer than I want. With any luck, though, the surgery will get the cancer, and the follow-up chemo will get rid of any lingering microcopic bits and in April, we'll be able to write all this off as the shittiest 41st birthday present ever and move on.
OK... to explain the title. There's an old joke where a guy says "You know what burns my ass?" (an expression that means you know what bothers me?) and the other guy says "No, what?" and he says, holding his hand up to his ass, "A flame about this high."
See? Totally worth the explanation. We all laughed, right?
Wednesday, August 08, 2012
33. Iron Man
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| No, not this guy |
I'm happy to report that, almost halfway through the chemo/radiation (tomorrow is day 14 of 28), I'm feeling much, much better.
Not just in general, although I am feeling better in general, but specifically the fatigue and blechiness that was just killing me is more or less gone.
Turns out that one of the side effects of the chemo/radiation is that I'd gotten a bit anemic. So every Monday, starting two weeks ago, they've started giving me iron before they plug in my pump. And the difference is like night and day.
On the first Monday when I got the iron, I didn't even nap when I got home, I just kept going. Same with most of that week. I've been a little more tired this week, but I think a lot of that is down to me feeling good enough to actually be up and about a bit more, exerting myself and actually using up what energy I have.
There's not much news on the tumor as of yet. We looked at the scans on Tuesday, and the doctor said (I can't read those things, even when they explain them to me) that while there isn't a lot of shrinkage yet, there's definitely some, and some break-up of the tumor. I certainly feel like it's working, because I've been able to take my pain pills less frequently, and I just generally feel a lot better, a lot more functional.
Next week my sister and one of my nephews are coming to visit, and we're looking forward to that. And I'm certainly looking forward to being done with the chemo/radiation in a few weeks. But right now, I'm not getting any of the skin irritation side effects I was warned about, in fact with the iron taking care of a lot of the fatigue, I'm not seeing much in the way of the side effects at all. Which is much, much better than where I was a couple weeks ago.
Saturday, July 28, 2012
32. Blargh
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| Yeah. Like that. |
In fact, at first I was pretty happy. I didn't feel the radiation at all, it was simple, all I had to do was lay still for about twenty minutes. And that's been my experience all week. I don't feel the radiation, getting the treatment is the easiest part of the whole thing.
But...
It turns out that the chemo pills aren't covered by our insurance. So I could choose to pay close to $400 a week (if we qualified for financial assistance... if we didn't, it was $1800) for pills or nothing for a pump. So despite hating being hooked up to the pump, I went that way. So I've got four and a half weeks coming of wearing a pump five days a week.
Here are the problems with the pump: It's clunky and makes it hard to sleep, and it makes it really hard to shower, because you've got to cover the port with plastic wrap, then hang the actual pump outside on a hanger, then take a quick shower where you try to avoid getting the port area too wet. It turns one of my most enjoyable things, a hot shower, into an ordeal for most of the week.
However, even that was a minor inconvenience, relatively speaking. I mean, from what I hear, the pills are giant, you take them twice a day, they can have worse side effects, I might have chosen the pump eventually anyway. Would have been nice if it had been a choice, but that's not the healthcare system we have.
But no, the problem is the side effects. Which are immense, immense drowsiness. Not just of the "must go sleepytime now" variety that I had with chemo, but just a general weariness. And a little nausea, which the pills have taken care of, but which is still a touch annoying. And a general "bleh" feeling that I can't pin down. Sometimes, even when I'm not in pain (due to a lucky hour or two or to the relatively effective pain medicine I'm getting), not having to run to the bathroom constantly and not nauseous, I still just... don't feel good.
The worst part is, I never know when these feelings are going to hit. I'll have hours where I'm fine, but I don't know when those are going to be, which makes it really hard to schedule work and social stuff around it. So my life for the next month and a half is go to radiation/chemo, do work when I can, come home and sleep. I'm going to be a bit more of a hermit than I like to be. And poor Suzanne is really having to do all the work with the kids. Most of the time when it's bedtime, I can't read because I'm crashed out on the couch in my office.
That said, there is good news. The doctor explained that radiation always shrinks, and in 10-15% of the cases, it shrinks the tumor entirely. After our experience with chemo, I'm not even allowing myself to dream of that outcome, but I am hopeful that all this annoyance and suffering will be worth it. And the side effects I'd been expecting haven't surfaced yet, so really it's just feeling useless (and being useless) more than actually being in more pain, which is good.
Anyway, that's the latest cancer update. Believe me, I wish it was happier as much as you do.
Thursday, July 12, 2012
31. Marathon (a.k.a. The Latest Cancer Update)
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| Marathon, a cool graphic novel with amazing artwork |
The results were... disappointing. They could have been worse, although honestly not a lot worse. The good news is that the cancer hasn't spread, and some of the lymph nodes appear to have shrunk somewhat. The bad news is the blood marker (CEA) is elevated, not reduced, and the tumor is still very big, and very much encroaching on things I'd like to use, like my "seminal vesicals" (I think that's the term) and my prostate. So if radiation doesn't shrink the damn thing, or even if it does, the surgery is going to be invasive and probably cause some long-term issues.
Specifically, the surgeon talked about bringing in a urologist and a plastic surgeon, because there could be problems related to having to cut in and around what's in that area. I'll leave it up to the imagination what that means, but suffice to say, my quality of life could be significantly changed after the surgery, beyond just the colostomy that I've come to accept as a fait accompli. This is not the news I was hoping for. I was hoping for a Breaking Bad-style miracle 80% tumor shrinkage.
It was a little discouraging, and it wasn't the only part of the trip that was. I accidentally refilled the wrong painkiller meds, so I wound up on lesser painkillers right about the time we were taking a long car trip, and when you're having pain in your butt, the last thing you want is to sit in a car for three hours. So the trip down was fairly unpleasant.
The CT scan took place at the ungodly hour of 6:30 in the morning. Actually, that's when we got there for blood draw, and prep, the actual scan didn't take place until I'd been sitting around (see pain in butt and sitting around, above) until 10 AM. And it involved drinking a *lot* of banana-flavored barium (nasty), an IV (ouch) and rectal barium (ouch again, and gross). End result? Lot of pain, lot of unpleasantness, and having to clear the barium and such out of my system made for a fairly unpleasant rest of Monday.
On Tuesday, we went in to see the surgeon. Originally a sigmoidoscopy (flexible camera tube shoved somewhere uncomfortable) had been scheduled, but it wasn't on the schedule anymore, so I didn't prep for it by avoiding breakfast or doing an enema or anything like that. Come to find out, that was a computer glitch, and so I did have to get it done. More ouch. Although honestly, Dr. Chang is pretty good, and it didn't hurt as much as when my previous surgeon Dr. Jahadi did it. For those counting, I've now had this flexible camera tube thing done three times.
Then we had to stick around for Wednesday, when we saw their oncologist, Dr. Kee. Unfortunately, we didn't really need to, we only saw him for about five minutes, and the plan was already in place to do radiation in Austin, so that whole day felt like a bit of a waste, especially since we had to pay for another night at the hotel in Houston, and we really would have liked to have come back to Austin on Tuesday night, since we were done at MD Anderson by early afternoon.
So all in all, a disappointing, frustrating and uncomfortable visit to Houston. We stayed at the Holiday Inn Suites, which was actually much nicer than our previous hotel, and we ate at a variety of different restaurants, got some good Thai, some good pie (from House of Pies) and spent way too much money on hotel and food.
That's all bad news and grumbling. Here's the good news. We're still on track for the cancer-fighting plan. Starting next Wednesday, I'll be going in for radiation with chemo pills to enhance the radiation. I have no idea what to expect, although I'm expecting it to be harder than the chemo. It's five days a week for 28 days, so it'll probably run until the end of August. In the first week of September, right after the kids start school, there will be another trip down to Houston for an MRI (and knowing my luck, another sigmoidoscopy) to assess and prep for the surgery. The surgery will take place 6-8 weeks after that to give me time to recover from the radiation, so ballpark, probably in mid-October. I'm expecting recovery from the surgery to take a while and be kind of painful and long. I believe the plan is 6-8 weeks of recovery, than 8 cycles of chemo to make sure we get any cancer that's left. So figure that'll start in December and run through March or maybe April. Best case scenario, cancer free by my birthday next year.
Of course, our deductible resets in January, so our medical expenses are going to pile up in the early months of 2013, but we should be able to handle it with help from our families, who have already offered. Honestly, the money is less what I'm worried about right now than what I'm going to look and feel like after the surgery.
But the next part of this marathon is the radiation/chemo. I have no idea what to expect, and while I'm nervous, part of me is ready to at least know what to expect in terms of pain/fatigue and other side effects so I can get used to the new routine. 5 days a week is gonna be harrowing and is really gonna mess with an already messed-up work schedule, but I'm doing what has to be done, and I'm really blessed to have two great managers in Dave Farabee and Nick Budd and two great employees in Roxy and Teala to keep the store running while I feel like mostly a ghost there.
That's the other upside, and there are plenty of them. I've got amazing support from a huge network of friends and family, and they keep my spirits up when I'm tempted to despair a little. My wife has been amazing through all of this, dealing not only with the bills but driving me around, doing a lot more of the work with the kids and letting me nap and lay around when I feel like I should be helping out. And because I've been forcibly removed from working 40 hours, I've had more time to watch TV, read books and comics and do other leisure type activities that I haven't had as much time for in recent years. It's a forced vacation, and one that's actually more expensive than just taking the whole family to Europe or Disney World or whatever, but there are some vacation-like benefits to it on occasion.
Monday, June 25, 2012
28. The June Cancer Update
So this was originally going to be a post about the Wildstorm universe, how it's got some pretty great characters and ideas, and how DC has no idea what to do with it. But I never actually wrote that beyond a little thinking, so instead you get the cancer update. Sorry, comics fans. But hey, congratulations, cancer fans!
Last time I wrote, I had taken my second round of chemo and was scheduled for a trip to MD Anderson in late July. I've been updating on Facebook, but haven't updated here, sorry about that.
The week out of chemo two, I had a bit of a scare. I thought I might have gotten infected again, which was the same problem I had that first put me into the hospital when we found the cancer. My previous surgeon had instilled the fear of God into me that such a thing would be really, really bad and could (in his words) "affect the prognosis." So instead of going to the doctor and checking it out, I spent the week wishing real hard that it would go away. End result: Emergency room on a Saturday with bleeding somewhere you don't want bleeding.
The good news is, it wasn't an infection, but the bad news is, it probably would have been much easier if I'd just gone to the doctor during the week. At any rate, after a quick trip to the hospital that unnecessarily scared my mom and my wife (sorry) and probably others (sorry), all was well and I felt better.
The good news is, it wasn't an infection, but the bad news is, it probably would have been much easier if I'd just gone to the doctor during the week. At any rate, after a quick trip to the hospital that unnecessarily scared my mom and my wife (sorry) and probably others (sorry), all was well and I felt better.
Then it was week three of chemo, and it turns out, the effects kind of are cumulative. Monday was OK as normal, no new problems, I've been drinking enough water and getting enough protein, so there aren't any side effects that are new. I didn't get any new reports on the blood markers about whether or not the cancer has shrunk, but just based on how I'm feeling, I believe that the chemo is working and the tumor is shrinking.
However, on Wednesday, when I got the Omega Pack off, I just crashed. I barely remember work, and I headed home and slept for what was probably the rest of the day. I was exhausted and stayed that way until probably mid-Thursday. The whole thing kinda screwed up my sleep schedule, which is still screwed up. I've been waking up early (which anyone who knows me will tell you is not my natural state), crashing in the afternoon and then being awake and unable to sleep late at night (OK, that is my natural state). Still trying to get back on keel, and probably will just in time for the last round of chemo to fuck it all up again the first week of July.
Ah, that's the news. Due to some miscommunication between MD Anderson and Texas Oncology, we actually hadn't scheduled the last round of chemo, and we were going to basically wait three weeks for my trip in late July and then do chemo. Or at least, that's what my oncologist thought, and he was definitely nervous about it. That was never my plan, though, and we got it all worked out. Because of the weird Wednesday July 4th, unfortunately, my last round of chemo is going to be on a Tuesday through Thursday schedule, which really screws with my work schedule, but that's the way it has to be.
The good news (sort of) is that MD Anderson happened to call me after my oncologist's appointment to see how I was doing, and I was surprised to learn that we could actually move up my appointment. While I would have loved a couple weeks off instead of going right to Houston after a week of chemo, earlier is definitely better, and so my trip got moved from late July up to the second week in July, the 9th through the 11th.
Well, the 8th, because the new appointment has me in at 6:30 in the morning on Monday, which means we need to get there on Sunday. And then we have a late appointment on Wednesday, which means it's a longer time in Houston than I'd like. But... this is going to be the time to get the scan and find out how the chemo has done, which is a cause for nerves but also very important information.
Ah, that's the news. Due to some miscommunication between MD Anderson and Texas Oncology, we actually hadn't scheduled the last round of chemo, and we were going to basically wait three weeks for my trip in late July and then do chemo. Or at least, that's what my oncologist thought, and he was definitely nervous about it. That was never my plan, though, and we got it all worked out. Because of the weird Wednesday July 4th, unfortunately, my last round of chemo is going to be on a Tuesday through Thursday schedule, which really screws with my work schedule, but that's the way it has to be.
The good news (sort of) is that MD Anderson happened to call me after my oncologist's appointment to see how I was doing, and I was surprised to learn that we could actually move up my appointment. While I would have loved a couple weeks off instead of going right to Houston after a week of chemo, earlier is definitely better, and so my trip got moved from late July up to the second week in July, the 9th through the 11th.
Well, the 8th, because the new appointment has me in at 6:30 in the morning on Monday, which means we need to get there on Sunday. And then we have a late appointment on Wednesday, which means it's a longer time in Houston than I'd like. But... this is going to be the time to get the scan and find out how the chemo has done, which is a cause for nerves but also very important information.
So that's the update. Chemo does get a little rougher as it goes, but I'm still doing pretty well, all things considered. Things have moved up, which means we're moving faster, which means we're aggressively going after the cancer, which is good.
I have to admit, part of me has been thinking of chemo as a big thing to get over, but I'm starting to remember that this is a marathon, not a sprint. And realizing that the radiation/chemo could be harder, because I'm already a bit weakened by the chemo and it's five days a week instead of three days every two. And realizing that the surgery is gonna be tough, and the chemo after the surgery could be the hardest part. It's a little rough realizing that this really might be the easy part. But hey, when you're running a marathon, you can't exactly stop in the middle, right?
Oh, and I splurged and bought an iPhone and an iPad. So at least while I'm in Houston, I'll have plenty of entertainment.
Wednesday, June 06, 2012
25. Chemo (Round Two)
Monday was my second round of chemo. I've got four rounds altogether before we head back to MD Anderson in late July for a CT scan, Sigmoidoscope and other pleasantness that will hopefully tell me if the tumor has shrunk as we had hoped, and get me on-track for chemo/radiation in preparation for surgery to get rid of the damn thing.
So far, the indications are good. I feel better (although still sick, but that's going to take a while to go away entirely), and the chemo has not been at all bad. Every other Monday I go in, sit down, they take blood samples from my port (much less annoying/painful than the stick you in the arm kind), then begin plugging bags into the IV. I mostly have to sit there, watch Netflix and HBO Go on my laptop, post random things on Facebook and occasionally repeat my birthday so they're sure the right medicine is going to the right person. I snack and drink water, it's relatively easy, and the biggest hassle is having to take a big wheeled thing with me when I need to go to the bathroom.
The side effects have been relatively minor. The cold sensitivity is the most annoying. Basically, for the five or six days after chemo, I can't drink cold liquids, or eat ice cream, or anything like that, because it feels like a shocking sensation in my throat. Today I discovered that if I hold something really cold, like say a glass bottle of syrup, for too long, that shocking sensation will also hit my fingers. But... minor, and easily avoidable.
The other big one is drowsiness. On chemo day, I'm functionally useless. I almost fell asleep at the restaurant on Monday I was so tired, and when we did get home, I crashed on the couch in my office for hours. Woke up later that night and was pretty awake, so it wreaks havoc on my sleep schedule for a few days. Fortunately I'm a night owl by nature anyway, so it's a minor adjustment, it just makes it harder to behave when I'm supposed to go to bed earlier for earlier work days. The same drowsiness seems to hit me on Tuesday nights as well, I can't remember if it's Wednesdays or not (after I get the pump disconnected) but I guess I'll remember for sure tomorrow.
Other side effects are just things we're watching. The oncology center calls me every day or two with a new instruction. Nothing too scary, just things like my liver function or kidney function are a little low or high, or today, that my protein intake was too low. So I've been put on a heavier amount of liquids, needing to drink more water every day (easy, I just carry my water bottle around and I'm drinking a lot more). Today I was told I need to eat five meals a day and get more protein, and they suggested Boost shakes among other things. So a quick trip to the grocery store later and I've got Boost Chocolate and Strawberry, Beef Jerky, Summer Sausage, Greek Yogurt and Protein Bars. Happily, what I got is stuff that actually tastes good to me, so all I have to do is remember to eat more often, and I should be all good.
It's a little nerve-wracking to realize that the chemo is disrupting things in my body that way, but it's good to know the doctors are on top of it, and if the end result is that it shrinks the tumor, we can get everything else back in balance later when I'm off the chemo.
So far, the indications are good. I feel better (although still sick, but that's going to take a while to go away entirely), and the chemo has not been at all bad. Every other Monday I go in, sit down, they take blood samples from my port (much less annoying/painful than the stick you in the arm kind), then begin plugging bags into the IV. I mostly have to sit there, watch Netflix and HBO Go on my laptop, post random things on Facebook and occasionally repeat my birthday so they're sure the right medicine is going to the right person. I snack and drink water, it's relatively easy, and the biggest hassle is having to take a big wheeled thing with me when I need to go to the bathroom.
The side effects have been relatively minor. The cold sensitivity is the most annoying. Basically, for the five or six days after chemo, I can't drink cold liquids, or eat ice cream, or anything like that, because it feels like a shocking sensation in my throat. Today I discovered that if I hold something really cold, like say a glass bottle of syrup, for too long, that shocking sensation will also hit my fingers. But... minor, and easily avoidable.
The other big one is drowsiness. On chemo day, I'm functionally useless. I almost fell asleep at the restaurant on Monday I was so tired, and when we did get home, I crashed on the couch in my office for hours. Woke up later that night and was pretty awake, so it wreaks havoc on my sleep schedule for a few days. Fortunately I'm a night owl by nature anyway, so it's a minor adjustment, it just makes it harder to behave when I'm supposed to go to bed earlier for earlier work days. The same drowsiness seems to hit me on Tuesday nights as well, I can't remember if it's Wednesdays or not (after I get the pump disconnected) but I guess I'll remember for sure tomorrow.
Other side effects are just things we're watching. The oncology center calls me every day or two with a new instruction. Nothing too scary, just things like my liver function or kidney function are a little low or high, or today, that my protein intake was too low. So I've been put on a heavier amount of liquids, needing to drink more water every day (easy, I just carry my water bottle around and I'm drinking a lot more). Today I was told I need to eat five meals a day and get more protein, and they suggested Boost shakes among other things. So a quick trip to the grocery store later and I've got Boost Chocolate and Strawberry, Beef Jerky, Summer Sausage, Greek Yogurt and Protein Bars. Happily, what I got is stuff that actually tastes good to me, so all I have to do is remember to eat more often, and I should be all good.
It's a little nerve-wracking to realize that the chemo is disrupting things in my body that way, but it's good to know the doctors are on top of it, and if the end result is that it shrinks the tumor, we can get everything else back in balance later when I'm off the chemo.
Thursday, May 31, 2012
23. Chemo Results & Water
So the big news, which is really not that big, is that I had my first follow-up appointment with the nurses at Texas Oncology on Tuesday this week to see how the chemo had affected me. It was just a blood test and a quick look at my vitals, there's no way to know too much, but they just wanted to generally see if there were side effects, if any of my levels were low, etc.
Everything looks pretty good. And while it's too imprecise to get too excited about, the blood marker that measures the tumor shrunk from around 14-something when it was measured at MD Anderson to 8-something after the first round of chemo. So it looks like the chemo is doing it's job, and without any real side effects, save a mild cold sensitivity where I couldn't drink cold drinks for about 5-6 days without feeling a shock-like sensation at the back of my throat.
I did get a call the day after the visit, though, just to say that there was nothing serious, but that my kidney levels could be a concern in future, and that I needed to make sure and drink a lot of fluids. Ideally about two liters of water a day.
Those who know me know that I used to scorn the drinking of water. It doesn't have any flavor! In fact, for a long time I drank about 4-5 Cokes a day.
That is not a typo.
When I decided to get serious about losing weight, I cut back on Cokes, down to 1-2 a day. Switched in some flavored teas (Texas Tea is my favorite), Raspberry Lemonade, that kind of thing. Still not a ton of water. But I did start drinking a little more.
When I went into the hospital for the colonoscopy in April, I had to forgo drinking or eating anything for a pretty decent period, and so I had the long-dreaded caffeine headache. Along with every other symptom that came with the complications of my colonoscopy, it was actually relatively minor. And once I'd gotten it over with, I decided I'd be kinda stupid to go back to the addiction again, so I decided to officially quit sodas.
As a result, I've been drinking more water, and I've gotten to the point where I don't need flavored drinks as often, although I was craving flavor so badly recently that I had a two-day addiction to Sonic's Cherry Limeades (until the cold sensitivity put the kibosh on that) and then made a special trip to Central Market to buy a dozen Texas Tea flavored with Poteet Strawberry or Fredericksburg Peach.
But now I need to be more serious about it, and I have been. I bought a Bobble filter water bobble right before chemo, and I love it. It filters whatever water you put into it, it holds about 18 oz. of water, and I've been carrying it with me pretty much everywhere. Once I got the word from the doctor, I did the math and figured that I need to fill and drain the thing about 4 times a day to get the water I'm supposed to. Which is pretty easy, as long as I keep it with me and just kind of drink from it regularly. It's a strange transition that happened over a long period of time, but I've become the guy who keeps a water bottle with him and drinks that instead of sugary sodas.
If you'd told me I was going to do that a couple years ago, I'd have laughed right in your face.
Everything looks pretty good. And while it's too imprecise to get too excited about, the blood marker that measures the tumor shrunk from around 14-something when it was measured at MD Anderson to 8-something after the first round of chemo. So it looks like the chemo is doing it's job, and without any real side effects, save a mild cold sensitivity where I couldn't drink cold drinks for about 5-6 days without feeling a shock-like sensation at the back of my throat.
I did get a call the day after the visit, though, just to say that there was nothing serious, but that my kidney levels could be a concern in future, and that I needed to make sure and drink a lot of fluids. Ideally about two liters of water a day.
Those who know me know that I used to scorn the drinking of water. It doesn't have any flavor! In fact, for a long time I drank about 4-5 Cokes a day.
That is not a typo.
When I decided to get serious about losing weight, I cut back on Cokes, down to 1-2 a day. Switched in some flavored teas (Texas Tea is my favorite), Raspberry Lemonade, that kind of thing. Still not a ton of water. But I did start drinking a little more.
When I went into the hospital for the colonoscopy in April, I had to forgo drinking or eating anything for a pretty decent period, and so I had the long-dreaded caffeine headache. Along with every other symptom that came with the complications of my colonoscopy, it was actually relatively minor. And once I'd gotten it over with, I decided I'd be kinda stupid to go back to the addiction again, so I decided to officially quit sodas.
As a result, I've been drinking more water, and I've gotten to the point where I don't need flavored drinks as often, although I was craving flavor so badly recently that I had a two-day addiction to Sonic's Cherry Limeades (until the cold sensitivity put the kibosh on that) and then made a special trip to Central Market to buy a dozen Texas Tea flavored with Poteet Strawberry or Fredericksburg Peach.
But now I need to be more serious about it, and I have been. I bought a Bobble filter water bobble right before chemo, and I love it. It filters whatever water you put into it, it holds about 18 oz. of water, and I've been carrying it with me pretty much everywhere. Once I got the word from the doctor, I did the math and figured that I need to fill and drain the thing about 4 times a day to get the water I'm supposed to. Which is pretty easy, as long as I keep it with me and just kind of drink from it regularly. It's a strange transition that happened over a long period of time, but I've become the guy who keeps a water bottle with him and drinks that instead of sugary sodas.
If you'd told me I was going to do that a couple years ago, I'd have laughed right in your face.
Monday, May 21, 2012
21. Chemo Begins
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| Chemo by Peter Sorenson |
The plan is this: Chemo first, chemo/radiation second, surgery (in Houston) third and chemo to follow up. So it's gonna be an even longer haul. But I'm much more confident in the surgical side of things, since Dr. Chang, the surgeon in MD Anderson, has done more of these types of tumors, where my previous doctor really hadn't. (Also? Dr. Chang was nothing like Senor Chang on Community. A relief, but also a minor disappointment.)
At my urging/insistence and with no real resistance from the folks at MD Anderson, we're doing all the chemo and chemo/radiation here, and just the surgery and follow-up scans in Houston. So we'll be there for a day and a half in July, then again following the radiation (probably late September-early October) then for a longer stretch for surgery (I'm guessing November). But most of the work will be done here in Austin, or technically Round Rock, at Texas Oncology, which is great, because I really like everybody there.
Today just confirmed that, because everyone was fast, professional, nice and easy to talk to. Dr. Kocs, my oncologist, is a funny guy who shoots straight but helps maintain my positive attitude, and all the nurses were fantastic as always. The doctor made me very happy when he said he didn't expect me to have any nauseau due to the meds, and so far, the pre-meds and pills I've been given are keeping even any hint of nausea at bay.
I was there from about 9 AM - 3 PM, spent a lot of time on Facebook, watched several episodes of Bob's Burgers, dozed a bit while half-watching Serenity and a George Carlin special. No pain at all thanks to the numbing spray and my port, got the Omega Pack hooked up for the next couple days and it's a little annoying but really not that bad.
Came home and was just wiped out exhausted, took a three hour nap. Still felt a bit groggy (but hungry) at dinner time, and found that one of my friends had changed his Facebook photo to Chemo (the DC supervillain) in solidarity, and had exhorted other friends to do the same, and as of now, about 20-some of my friends have done that, including that cool one above drawn by Peter Sorenson. I was touched and a little teary when I saw Facebook's "So and so has changed their profile pictures" and saw that almost all of them were Chemo.
I got a touch of the cold sensitivity side effect, I think, because my ice water with dinner was tingling my mouth unpleasantly, so ice cream, shakes and *sigh* Cherry Limeades are probably off for a little while, but that's not so bad. Otherwise, I'm feeling better right now than I have at any time in the last week or so. I don't know that it'll last, there's always a relapse of pain or discomfort, and I'm certainly not 100%, but I feel pretty good now, which is where I wanted to be when we started down chemo road.
The amount of support I'm getting from friends, family and casual Facebook acquaintances is just overwhelming, and it's making the whole thing a lot easier. All things being equal, I'd rather not have cancer, but if I've gotta go through this, I think this is the best possible way in which to do it.
Tuesday, May 15, 2012
19. It's Tuesday, It Must Be Houston
As I write this, we're on the last night in the hotel in Houston, for the inaugural stop of Cancer Tour 2012. It's not a glamorous stop, Houston, but the other stops include Austin, Round Rock and my rectum, so at worst, it's like the fourth most glamorous stop.
Yes, I just implied that Houston is less glamorous than my rectum. Sorry, Houstonites. This really ain't my kinda town, based on what little I've seen of it. Although hat tip for 59 Diner, an awesome local chain we loved so much that we went both nights we were here for dinner. I got the big country breakfast (sausage, biscuits and gravy, french toast, 3 eggs and hash browns - it came on three plates!) on night one and a chili cheese dog on night two. Reese's shake on night one, Black Cow (root beer, ice cream, chocolate syrup) on night two. For the record.
Anyway... the trip has been brief but eventful. We're staying at an Extended Stay America for $100/night (that's the "reduced" medical rate) and I was expecting something nice, maybe along the lines of the rooms I had at St. David's. Instead, we're just above Motel 6 here. It's decent enough, but very low-rent. I'll say this for them, their wi-fi works free and consistently. Beyond that... not a great place to stay long-term, and if we do wind up coming back to Houston, we'll probably be looking elsewhere for accommodations.
MD Anderson, sold to me as the greatest cancer center on the planet, was also a little underwhelming. I got a little spoiled at St. David's in Round Rock. The nurses there are without exception amazing, friendly, easy to talk to and super easy to find when you need them. The doctors have all been great, and I was feeling very comfortable with the notion of chemo, radiation and cancer treatment through these folks.
MD Anderson, in contrast, is huge. Like Dallas/Fort Worth airport huge. They've got pagers and systems and hundreds, maybe thousands, of staffers, and getting in feels very organized, but also very sterile and hands-off. The nurses don't have that personal touch because they're taking 5-6 people at a time. The doctor I've met had us waiting for an hour and a half because he'd been called to the OR and that threw his entire schedule off.
In fairness, they do a very good job. The MRI I had was relatively painless and easy, the doctor (when he did come to talk to us) did a good job explaining everything, and I'll forgive him shoving a tube somewhere uncomfortable for a not-insignificant amount of our time together because that's his job, and he did get a good look at the tumor in the meantime.
The good news is, no colostomy before surgery, which was looking likely. So no surgery, then recovery, which means chemo and treatment can start soonish. The bad news is, a permanent colostomy after surgery now looks like a lock, which is honestly in worst-case scenario territory for me. I'm sure I'll get used to it, but in terms of things I feared most when I got this diagnosis, having to poop into a bag for the rest of my life was pretty damn high on the list.
Tomorrow we see their oncologist to talk about the treatment. The treatment they recommend for a tumor that's the size of mine is actually chemo first, then chemo-radiation, then surgery. So the timetable has expanded a bit, from 9 months to closer to a year. And the chemo, the harder stuff with more side effects, will be right up front. But that could be good, I'm at my strongest now, so I'd kind of rather have the hardest medicine to deal with now before I've been worn down.
The other potential hitch is that ideally, they'd like to everything through their center. But I think I have a good chance of convincing: A) MD Anderson that I'm better off being closer to home for such intensive and long-term care and B) Texas Oncology to do the chemo then radiation thing, which is the reverse of how they usually do things.
Cross your fingers for me that those two things are true. Because while I'm actually pleased by the notion of having a more experienced colorectal surgeon working on my tumor when the time comes, the notion of spending five and a half weeks in Houston for chemo-radiation, and two days every two weeks for two months in Houston for chemo, is pretty high up on my "worst case" scenario list as well.
But if that's what it takes, that's what we'll do. I'm just hoping that we'll be able to do most of the regular treatment in Austin and then the surgery in Houston.
Yes, I just implied that Houston is less glamorous than my rectum. Sorry, Houstonites. This really ain't my kinda town, based on what little I've seen of it. Although hat tip for 59 Diner, an awesome local chain we loved so much that we went both nights we were here for dinner. I got the big country breakfast (sausage, biscuits and gravy, french toast, 3 eggs and hash browns - it came on three plates!) on night one and a chili cheese dog on night two. Reese's shake on night one, Black Cow (root beer, ice cream, chocolate syrup) on night two. For the record.
Anyway... the trip has been brief but eventful. We're staying at an Extended Stay America for $100/night (that's the "reduced" medical rate) and I was expecting something nice, maybe along the lines of the rooms I had at St. David's. Instead, we're just above Motel 6 here. It's decent enough, but very low-rent. I'll say this for them, their wi-fi works free and consistently. Beyond that... not a great place to stay long-term, and if we do wind up coming back to Houston, we'll probably be looking elsewhere for accommodations.
MD Anderson, sold to me as the greatest cancer center on the planet, was also a little underwhelming. I got a little spoiled at St. David's in Round Rock. The nurses there are without exception amazing, friendly, easy to talk to and super easy to find when you need them. The doctors have all been great, and I was feeling very comfortable with the notion of chemo, radiation and cancer treatment through these folks.
MD Anderson, in contrast, is huge. Like Dallas/Fort Worth airport huge. They've got pagers and systems and hundreds, maybe thousands, of staffers, and getting in feels very organized, but also very sterile and hands-off. The nurses don't have that personal touch because they're taking 5-6 people at a time. The doctor I've met had us waiting for an hour and a half because he'd been called to the OR and that threw his entire schedule off.
In fairness, they do a very good job. The MRI I had was relatively painless and easy, the doctor (when he did come to talk to us) did a good job explaining everything, and I'll forgive him shoving a tube somewhere uncomfortable for a not-insignificant amount of our time together because that's his job, and he did get a good look at the tumor in the meantime.
The good news is, no colostomy before surgery, which was looking likely. So no surgery, then recovery, which means chemo and treatment can start soonish. The bad news is, a permanent colostomy after surgery now looks like a lock, which is honestly in worst-case scenario territory for me. I'm sure I'll get used to it, but in terms of things I feared most when I got this diagnosis, having to poop into a bag for the rest of my life was pretty damn high on the list.
Tomorrow we see their oncologist to talk about the treatment. The treatment they recommend for a tumor that's the size of mine is actually chemo first, then chemo-radiation, then surgery. So the timetable has expanded a bit, from 9 months to closer to a year. And the chemo, the harder stuff with more side effects, will be right up front. But that could be good, I'm at my strongest now, so I'd kind of rather have the hardest medicine to deal with now before I've been worn down.
The other potential hitch is that ideally, they'd like to everything through their center. But I think I have a good chance of convincing: A) MD Anderson that I'm better off being closer to home for such intensive and long-term care and B) Texas Oncology to do the chemo then radiation thing, which is the reverse of how they usually do things.
Cross your fingers for me that those two things are true. Because while I'm actually pleased by the notion of having a more experienced colorectal surgeon working on my tumor when the time comes, the notion of spending five and a half weeks in Houston for chemo-radiation, and two days every two weeks for two months in Houston for chemo, is pretty high up on my "worst case" scenario list as well.
But if that's what it takes, that's what we'll do. I'm just hoping that we'll be able to do most of the regular treatment in Austin and then the surgery in Houston.
Sunday, May 13, 2012
18. Brave
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| Tangentially related... but it does look like an awesome summer movie, right? |
And while I certainly appreciate the compliment and don't mind hearing it, I have to admit I don't feel particularly brave. I'm just kinda turning into the skid. My other choice was to become a misanthropic grumpy bastard, and honestly, I've already done that. A lot. Without cancer.
So I handle cancer with my sense of humor and by doing my best not to let it totally upset my life. I'm not thrilled at how I've had to step back at work, or had to minimize my already minimal tasks at home, or not be able to help out friends or even sometimes go out with friends because I'm too tired, too pained or too weak. But everybody keeps telling me they understand, and I choose to believe them.
The truth is, though, my "bravery" is entirely selfish. I'm fighting this cancer so I can stay in this life with my wife. So I can see my kids grow up. So I can see my business continue to grow and thrive, so I can spend more time with my awesome and widespread group of friends and family. So I can (let's be honest) eat really, really unhealthy yet delicious food for years to come. So I can watch more TV and movies, read more comics and books and listen to more music.
Mostly, though, it's about my kids. I'm gonna fight this as hard as I can because I love my kids and I don't like to think of them without a dad. And really, that's not bravery. Anyone who wouldn't fight the devil himself for their kids doesn't really understand what parenting is all about.
By the way, a typo almost named this post "Grave." Which would've been kind of hilariously dark.
Friday, May 11, 2012
17. The Next Cancer Update
And then.
My surgeon, who always seems to deliver the bad news, had some consultations with other surgeons, and they started thinking maybe, since I'd had this infection beforehand, and since the tumor is so big and aggressive, that it might be a better idea to put in a colostomy ahead of time, before we start all the therapy.
So the brakes have been put on everything. I'm going to MD Anderson, which is apparently the top cancer center in the country, and happens to be in our backyard (Houston), and they're slotting us in relatively quickly. We're going there for a consult to find out what they want to do. We were hoping for Friday (that's tomorrow) but that was faster than they could move, so now we're hoping for Monday or Tuesday.
What can happen from here is many-fold. Could be we go down there, they do the MRI, tests, I talk to all their people (another surgeon, another radiologist, another oncologist) and they say "Go ahead with the plan" and we start a couple weeks later. That's the best case. It's also not what I'm particularly expecting.
They could also say "Put in the colostomy, wait a couple weeks to recover, then do the original plan." That's the second best-case, although I'm not thrilled with the idea of pooping into a bag. I mean, sure, on a dare or for a Klondike bar or something, but not on a regular basis. But y'know, whatever if it means we still get started soon.
They could also say "OK, we're going to do something completely different, and you're going to have to travel to Houston several times a week (or live here for 4-6 weeks) and do chemo, colostomy, surgery, all that stuff here."
But none of that gets done until the appointment is made, which is out of my hands, so I'm waiting for the phone call, which will hopefully come tomorrow. I know that in the long run, a delay of a few weeks isn't that big of a deal, and my original surgeon was quite clear that the tumor has been around for six months, maybe even a year, so the odds of a couple weeks making any difference in terms of it spreading are much, much lower than the odds of an infection or a blockage developing later that could really fuck things up.
But... I was all set to go. Psyched up and ready to start this treatment, get the ball rolling, and now we're back at what feels like first and ten again. So it's a little frustrating. But I've heard nothing but good about MD Anderson, and I know that, like everything else, this will fade into memory when and if we get the damn cancer cured.
If I seem a little grumpier lately, though, that's why. Don't worry, though, headspace still positive, still gonna beat this thing, etc. etc.
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