IT'S GAMEDAY
THE LYMPHOCYTES AND NEUTROPHILS HAVE COMPLIED
THE LYMPHOMA IS ON VACATION VISITING ITS GRANDMOTHER AT HOME IN COLUMBUS (I FIGURED IF CANCER HAS A HOME IT WOULD BE IN COLUMBUS, OHIO).
I AM GOING TO ANN ARBOR.
I AM GOING TO POUND SO MUCH FREAKING GATORADE DURING THIS TAILAGTE
GO BLUE!
Saturday, September 4, 2010
Friday, September 3, 2010
Cycle 1 meeting notes
Met with Dr. Anderson this morning and received some unfortunate news: I have lymphoma.
Gonna let that sink in for a while...
Now that we're over that, news from this morning, generally positive:
From now on, please refer to me as Nick "The Reason" Cheolas. Thank you.
Also: I don't want to pile on, Detroit. I know you have problems. But I can't imagine that people parking their cars in an empty field near a restaurant is a major problem. So please do not send people out to place tickets on the cars...
...of people who have decided to make a trip into your city.
Gonna let that sink in for a while...
Now that we're over that, news from this morning, generally positive:
- I'm a go for this weekend. Blood work looks good and the doc gave me the green light. That is, after voicing his concerns about Michigan's defense and telling me to drink Gatorade. So I'll be in Ann Arbor tomorrow. Somebody give me a free ticket to the game because I have cancer. Or sell me one.
- My weight is good. I don't weigh very many pounds, as many of you know. I cruise around in the 145-150 range on a regular basis. Between the lymphoma and the chemo, I've dropped a few pounds, but actually recorded an increase today, so that was a bonus. The fluctuations are all quite small, but I don't want to lose too much weight in terms of overall percentage.
- I had blood drawn late Tuesday night when I was in the ER and again today. The Tuesday blood looked pretty good, and there aren't any real concerns about today's sample.
- Dr. Anderson said my TUMAHS!! felt "better," whatever that means. I assume smaller. I guess that's a positive, but I'm not sure what the alternative was besides, "Dear Lord, your tumor is feeding on the Rituximab!" Even though I had the tumor removed there is still a noticeable lump under my left arm, and there is still a sizable cluster of cancerous cells over there. So it is semi-possible to monitor my response through clinical exams.
- The ridiculous shooting pulsating back thing I have going on was most likely caused by my Neupogen shots. Apparently the regeneration of bone marrow can cause pain. In early clinical trials of Neupogen, people were in the hospital on morphine drips because the pain was so intense. They manage this by cutting dosage or duration of the shots, so the doc might cut a day or two off my injections. Either way, so long as I know the pain is a) not a sign of something more serious and b) a known side effect of one of my drugs, then whatever. Chemo hurts. It's not the pain that bothers me as much as the uncertainty of what's causing it.
From now on, please refer to me as Nick "The Reason" Cheolas. Thank you.
Also: I don't want to pile on, Detroit. I know you have problems. But I can't imagine that people parking their cars in an empty field near a restaurant is a major problem. So please do not send people out to place tickets on the cars...
...of people who have decided to make a trip into your city.
Questions! Ideas! From you!
I'm sitting here waiting for the Tigers to blow this game (they're up by 1 run with 1 on in the bottom of the 11th inning), so I decided to throw up a post.
Help me out: As I mentioned in an earlier post, I was toying with the idea of soliciting questions and doing a mailbag-type feature on the site. With the number of questions I receive and with the messages I receive of the "thank you for helping me understand this" variety, perhaps there are some questions out there that would be good in a post or worthy of a post of their own. Plus, once you get into the grind of chemo, it gets more difficult to come up with a steady stream of content (although I have some stuff in the pipeline). Not because I feel terrible and can't write, but because it gets pretty monotonous.
So here is my request: E-mail me (ncheolas@gmail.com) and let me know what you want me to write about. Could be a question, could be an idea you have, could be a topic that you want to see me write about, whatever. Could be random thoughts that aren't quite anything but might make good material. It doesn't even have to be that cancer-related, since I see pretty much everything through a different lens now. Based on the volume of questions I get from people when I'm out and about, and given my goals here, I think this might be a good way to help people understand more about this whole situation. I'll maintain anonymity.
Today: Meeting with Dr. Anderson this morning downtown, will have an update on that meeting sometime today. Really not sure what goes on at these pre-chemo meetings, but the doc will ostensibly give the thumbs-up or thumbs-down to continue to cycle two.
As for my all-important blood work: I had blood drawn on Tuesday when I was in the hospital, so I'm not sure if they'll draw again today. My blood looked pretty good on Tuesday (I mean the numbers, not the blood itself, although that looked good too), so I'm hoping that holds true tomorrow. I'm expecting to make it to Ann Arbor this weekend.
Also, the Tigers did blow the game. But then they un-blew it and won in the 13th. So I was half right. Go Lions.
Help me out: As I mentioned in an earlier post, I was toying with the idea of soliciting questions and doing a mailbag-type feature on the site. With the number of questions I receive and with the messages I receive of the "thank you for helping me understand this" variety, perhaps there are some questions out there that would be good in a post or worthy of a post of their own. Plus, once you get into the grind of chemo, it gets more difficult to come up with a steady stream of content (although I have some stuff in the pipeline). Not because I feel terrible and can't write, but because it gets pretty monotonous.
So here is my request: E-mail me (ncheolas@gmail.com) and let me know what you want me to write about. Could be a question, could be an idea you have, could be a topic that you want to see me write about, whatever. Could be random thoughts that aren't quite anything but might make good material. It doesn't even have to be that cancer-related, since I see pretty much everything through a different lens now. Based on the volume of questions I get from people when I'm out and about, and given my goals here, I think this might be a good way to help people understand more about this whole situation. I'll maintain anonymity.
Today: Meeting with Dr. Anderson this morning downtown, will have an update on that meeting sometime today. Really not sure what goes on at these pre-chemo meetings, but the doc will ostensibly give the thumbs-up or thumbs-down to continue to cycle two.
As for my all-important blood work: I had blood drawn on Tuesday when I was in the hospital, so I'm not sure if they'll draw again today. My blood looked pretty good on Tuesday (I mean the numbers, not the blood itself, although that looked good too), so I'm hoping that holds true tomorrow. I'm expecting to make it to Ann Arbor this weekend.
Also, the Tigers did blow the game. But then they un-blew it and won in the 13th. So I was half right. Go Lions.
Thursday, September 2, 2010
In which I set out to write about Michigan Football but went back to writing about cancer because that is less depressing
I considered a "Michigan Football" post. I figure the audience here leans pretty heavily toward Michigan. And then we have the MSU fans and alums, who care even more about Michigan than the Michigan Alums. And then there are people who attended schools that aren't Michigan and say clever things to me like, "How's Dick Rod workin' out for you LOLOLOL!!!" And then there's Mike Rosenberg, who is currently chasing down sources for his story on how the Michigan coaches worked a player so hard he became paralyzed and yet are still forcing him to run out of the tunnel with the team this Saturday.
But this cancer thing...I can't shake it. So my thoughts (my blog posts begin as thoughts and I usually turn them over in my head for a while before I even begin writing. This is the opposite of how most other people write on the internet - vomit out unripe thoughts and see what sticks) inevitably kept mixing the two: Lymphoma and Michigan Football.
(An aside: The fact that a 25-year-old cancer patient can't stop thinking, "wow, my current situation reminds me so much of my favorite football team," says everything you need to know about Michigan Football the past couple years. My thought process here was, "I'm going to write about Michigan Football. Start writing. My word, that's depressing. I think I'm going to write about my cancer instead.")
Since the Red Wings won the Cup in 2008, it hasn't been a great couple years for Michigan or Detroit sports. For me, things came to a boil in March, when, moments after watching this happen, I slowly devolved into a pile of goo on Twitter:
***
There's a point at which enough bad/unlucky/unfortunate things happen, in succession or with such absurd timing, that you stop believing in things like fate and chance and start believing that something is out there has a plan for you, and that plan most definitely does not take your physical or mental well-being into consideration.
So when Troy Woolfolk - a Senior, team leader, all-around good guy, and experienced starter in Michigan's inexperienced secondary - went down with a dislocated ankle a couple weeks ago, this little diddy turned up on various Michigan websites:
Because that's the way we felt. There was Troy, minding his own business, doing his thing. He stayed around when others left. He was a team leader, mentoring the younger guys. He was a Senior starter. This was his year. This was his time. And out of nowhere, for no reason: BOOM. Not even a sprain or strain or bump or bruise. Not in game 9. Nope. Dislocated ankle in fall camp. Season over before it even begins.
Sorta reminds me of another guy. Studying for the bar exam, doing his thing. Really wanted to head out to DC in 2007 but Michigan Law came along and Jimmy Stewart-ed him (about which he has no regrets). So he hung around, got himself a job in DC, won three IM championships in a single year. Did some positive-karma things like helping to free innocent people from prison. Was excited to finish the bar, move to DC, get a new place, start his new job. So he was just standing there one day in a suit talking on his cell phone, looking admittedly like a douchebag but that's only because the photographer snapped the picture when he wasn't ready and it really was an important call...
At some point, there's nothing left to do besides gaze aimlessly into the sky with outstretched hands and upward palms and ask, "What? Why?"
***
I've never been more anxious about a season in my entire life. And by "season" I mean this fall, and I'm referring to the battles on and off the field. Leaving Ann Arbor after seven years was difficult, but I knew my departure wouldn't really hit me until that first football Saturday. That would be the real psychological test. Not tailgating with my friends in Ann Arbor on a game day for the first time since I was 18 will be one of the most difficult days of my year.
Now my attendance on Saturday does not depend on where I'm living, but my white cell count. And if I go, I will have to play water pong or something. And I don't even know if I want to go, because I don't know if I'll be able to stand the experience or deal with the outcome or if I'll melt down like Ron Burgandy in his glass case of emotion. I have cycle 2 coming up next Wednesday. But WHO IS GOING TO START ON SATURDAY WILL WE BE ABLE TO STOP THE PASS?!?!
***
So, the football thing for a second. I do know the exact point at which I will officially become seriously concerned about Michigan Football: When people stop talking shit to me. The last two years have been pretty bad, but nothing is worse than being irrelevant. I've had people from various schools - Maryland, Virginia, Kentucky, Duke come to mind off the top of my head, and Michigan State offers a major on "being preoccupied with Michigan" - give me crap about Michigan Football in the past year. And I don't really argue with these people, because what's the point? Aside from pointing out the fact that I couldn't name a single player on most of those teams, nor could I criticize their records because I had no idea what they were. The point at which I'll really hit the panic button: If Michigan goes 5-7 and nobody says anything about it. Because the only thing worse than being bad is being irrelevant.
***
All that said, I'm confident about both situations: mine and Michigan Football. Probably more confident in my own. I know my current situation has put everything else in my life in perspective. I hope it has made me more able to deal with things like Michigan Football, and hasn't just made me more susceptible to one final, crushing blow to my psyche. I do know what helps in both contexts: faith. Keeping your eyes on the prize. Knowing that suffering has a purpose; that it has not been in vain, and that it will make you appreciate things in the future that you probably took for granted before. I'm confident there will be a time when a cancer-free me will be celebrating a National Championship. Hell, a Big Ten Championship would be amazing at this point. But those things will be that much sweeter because of what we've been through to get there. And so we endure.
Here goes nothing.
But this cancer thing...I can't shake it. So my thoughts (my blog posts begin as thoughts and I usually turn them over in my head for a while before I even begin writing. This is the opposite of how most other people write on the internet - vomit out unripe thoughts and see what sticks) inevitably kept mixing the two: Lymphoma and Michigan Football.
(An aside: The fact that a 25-year-old cancer patient can't stop thinking, "wow, my current situation reminds me so much of my favorite football team," says everything you need to know about Michigan Football the past couple years. My thought process here was, "I'm going to write about Michigan Football. Start writing. My word, that's depressing. I think I'm going to write about my cancer instead.")
Since the Red Wings won the Cup in 2008, it hasn't been a great couple years for Michigan or Detroit sports. For me, things came to a boil in March, when, moments after watching this happen, I slowly devolved into a pile of goo on Twitter:
Well, at least Michigan's hockey team is good.
Friday, March 12, 2010 2:16:21 PM via TweetDeck
I mean, at least Michigan's football team has never suffered two consecutive losing seasons.
Friday, March 12, 2010 2:16:42 PM via TweetDeck
Parise scores with 9 seconds left! We're going to take this one in overtime! %@#$ you Crosby! Go USA! Friday, March 12, 2010 2:17:05 PM via TweetDeck
Well we still have the red wings, who will cruise into the top spot of the playoffs. Unless they suffer like 4798274 injuries LOL!
Friday, March 12, 2010 2:17:31 PM via TweetDeck
The Tigs led the division for 4 straight months! They're a lock for the playoffs!
Friday, March 12, 2010 2:17:57 PM via TweetDeck
I like the Billups trade, Dumars. Now we'll have all sorts of cap space to sign a big free agent in 2010! Friday, March 12, 2010 2:18:22 PM via TweetDeck
Game 7 of the Stanley Cup finals at home? Can you say R-E-P-E-A-T?! %@#$ you Crosby!
Friday, March 12, 2010 2:18:46 PM via TweetDeck
You mean we're only favored by 24 against Appalachian State?
Friday, March 12, 2010 2:19:22 PM via TweetDeck
Where's my gun?Weeks later, Michigan's Hockey team would follow an amazing CCHA Tournament run with a game-winning goal against Miami in the NCAA regional final. That goal would be waved off. This would happen minutes later. Then Manny Harris declared for the draft and wasn't selected. Then Donovan Warren declared for the draft and wasn't selected. But hey, at least the Tigers were in first place at the All Star break...!
Friday, March 12, 2010 2:21:37 PM via TweetDeck
***
There's a point at which enough bad/unlucky/unfortunate things happen, in succession or with such absurd timing, that you stop believing in things like fate and chance and start believing that something is out there has a plan for you, and that plan most definitely does not take your physical or mental well-being into consideration.
So when Troy Woolfolk - a Senior, team leader, all-around good guy, and experienced starter in Michigan's inexperienced secondary - went down with a dislocated ankle a couple weeks ago, this little diddy turned up on various Michigan websites:
Because that's the way we felt. There was Troy, minding his own business, doing his thing. He stayed around when others left. He was a team leader, mentoring the younger guys. He was a Senior starter. This was his year. This was his time. And out of nowhere, for no reason: BOOM. Not even a sprain or strain or bump or bruise. Not in game 9. Nope. Dislocated ankle in fall camp. Season over before it even begins.
Sorta reminds me of another guy. Studying for the bar exam, doing his thing. Really wanted to head out to DC in 2007 but Michigan Law came along and Jimmy Stewart-ed him (about which he has no regrets). So he hung around, got himself a job in DC, won three IM championships in a single year. Did some positive-karma things like helping to free innocent people from prison. Was excited to finish the bar, move to DC, get a new place, start his new job. So he was just standing there one day in a suit talking on his cell phone, looking admittedly like a douchebag but that's only because the photographer snapped the picture when he wasn't ready and it really was an important call...
At some point, there's nothing left to do besides gaze aimlessly into the sky with outstretched hands and upward palms and ask, "What? Why?"
***
I've never been more anxious about a season in my entire life. And by "season" I mean this fall, and I'm referring to the battles on and off the field. Leaving Ann Arbor after seven years was difficult, but I knew my departure wouldn't really hit me until that first football Saturday. That would be the real psychological test. Not tailgating with my friends in Ann Arbor on a game day for the first time since I was 18 will be one of the most difficult days of my year.
Now my attendance on Saturday does not depend on where I'm living, but my white cell count. And if I go, I will have to play water pong or something. And I don't even know if I want to go, because I don't know if I'll be able to stand the experience or deal with the outcome or if I'll melt down like Ron Burgandy in his glass case of emotion. I have cycle 2 coming up next Wednesday. But WHO IS GOING TO START ON SATURDAY WILL WE BE ABLE TO STOP THE PASS?!?!
***
So, the football thing for a second. I do know the exact point at which I will officially become seriously concerned about Michigan Football: When people stop talking shit to me. The last two years have been pretty bad, but nothing is worse than being irrelevant. I've had people from various schools - Maryland, Virginia, Kentucky, Duke come to mind off the top of my head, and Michigan State offers a major on "being preoccupied with Michigan" - give me crap about Michigan Football in the past year. And I don't really argue with these people, because what's the point? Aside from pointing out the fact that I couldn't name a single player on most of those teams, nor could I criticize their records because I had no idea what they were. The point at which I'll really hit the panic button: If Michigan goes 5-7 and nobody says anything about it. Because the only thing worse than being bad is being irrelevant.
***
All that said, I'm confident about both situations: mine and Michigan Football. Probably more confident in my own. I know my current situation has put everything else in my life in perspective. I hope it has made me more able to deal with things like Michigan Football, and hasn't just made me more susceptible to one final, crushing blow to my psyche. I do know what helps in both contexts: faith. Keeping your eyes on the prize. Knowing that suffering has a purpose; that it has not been in vain, and that it will make you appreciate things in the future that you probably took for granted before. I'm confident there will be a time when a cancer-free me will be celebrating a National Championship. Hell, a Big Ten Championship would be amazing at this point. But those things will be that much sweeter because of what we've been through to get there. And so we endure.
Here goes nothing.
Wednesday, September 1, 2010
Take it to the bank
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| The title was ambiguous so I added a picture to let you know this post was about sperm. Which you would have found out in the first sentence anyway, but some people don't do well with words. |
Chemotherapy has different effects on different people. One of the possible effects of chemotherapy is infertility...or at least an adverse effect on fertility. I don't know if that means babies with 12 toes or what, but the point is that chemo can do bad things to your children-in-waiting. So my doctor gave me a call a couple weeks ago and told me that I would be wise to make a few donations before I started treatment. I told him that I was already way ahead of him: I had been stockpiling frozen vials of my sperm in my freezer for years for such a reason. But the doctor suggested I see some professionals, so I obliged and gave the good people at International Cryogenics in Birmingham, MI a call.
I wasn't really nervous, but this was undoubtedly an awkward situation. Fortunately, the employees at IC are very professional. Although IC appears to hire no males, the people there do a wonderful job of making you feel comfortable. The first step is a blood test to make sure you don't have any of the yucky things that float around college campuses these days with these kids and their Ipods and their Tweeter and their rap music. After that, it was pee-in-a-cup time. I nailed both tests. Didn't even spill. I was on a roll.
Then it was paperwork time. This was a little tricky. There was a lot of paperwork and a lot of legal-sounding stuff regarding the care and custody of the samples. I brought Emily along for moral support, which was a good move because some of the stuff sounded like it was more important to women than it was to me and I have a tendency to zone out. I mean, once the deposit is made, my work is pretty much done.
For those of you wondering: samples may only be released to an "intimate partner." That means that my DNA is not up for auction unless I specifically give a sample for the purpose of donation. I think my sperm would have been pretty valuable though. At least until the whole lymphoma thing. That probably did to the value of my sperm what the oil spill did to BP's stock. But I think I'm rebounding with a strong blog performance, so who knows.
After a bunch of paperwork, its showtime, and you walk through the maze of a building to "Donation Room B." It's a lovely place, with presumably comfortable furniture that I would not go near and "magazines to aid in the collection." You stand in the room for a good five minutes wondering, Where the hell am I? and Am I really doing this? Then you laugh for a bit, because you remember the scene from Road Trip. Then you pull out your phone and find that scene from Road Trip on YouTube because it's pretty funny that you're in a similar situation. Except I was there because I had cancer and they were going to Austin to see a hot girl, but whatever. Tomato, tomahto.
The biggest problem I had: the literature. They have about 10 Playboys lined up. Which would be great if it was 1970 or I lived in Burma. But this is America in 2010. Modern Playboy is not an "adult magazine." Yeah, yeah, "I read Playboy for the articles" jokes aside, it's true. It's got some really great stuff. Playboy 2010 is a libertarian magazine with some solid journalists and candid interviews with interesting people. This is the worst possible thing you could lock me in a room with. I could have sat there and read them for hours. But Donation Room B was not meant for hours of magazine reading.
The rest of the story is reserved for premium subscribers to my website. Long story short, donation collected, and then it was back down to a room with a bunch of microscopes that looked like they were stolen from a high school science lab in a Chicago Public School. Apparently, these microscopes are for sperm-watching. Each visit is pretty expensive - about $220 a pop (ha!). But they do a ton of work on the samples to determine the "quality." They test your sperm count, motility, and other things I will omit because yuck gross. It's like the NFL combine, but for sperm. After the tests, the samples are distributed into various vials and those vials are placed into different cryogenic chambers and immersed in liquid nitrogen (in case one tank fails, they will have other samples).
Then it's on to contract-readin'. I'm apparently a lawyer now, what with the JD and bar exam and all. But I still feel like I should call in a grown-up to read important contracts for me. In any event, I tried to be lawyerly and read the thing carefully, since I was pretty much entrusting these people with my children for the next decade or so. But I couldn't stop wondering stupid, bar-exam induced things like "Are sperm considered 'movable goods' under the UCC?" and "If my sperm is destroyed in transit, who would bear the risk of loss?" I'm glad that test prepared me for real life.
Finally, the results. What, you thought I wouldn't go here? Well I just did. We're in the trust tree...in the nest here. This blog is REAL. Like Real World or Jersey Shore or something. Like Real Life: Lymphoma has Crushed my Sperm Count.
Oh, the results: not good. If the sperm are tested like NFL prospects at the combine, I'm like Rich Eisen in this clip. So I talked with my doctor about this business, and he told me that this was normal for Lymphoma patients. For some reason, some lymphomas mess with the "gonadal system" (his phrase, not mine). The very nice women at IC told me that my numbers were "good for a lymphoma patient." I'll be adding that trophy to my collection soon, just behind my "4th Place, 1990 Kindergarten Soccer" prize.
HOWEVER, the good news: Fertility treatments have become so advanced that it's pretty easy to use even diminished samples, and many lymphoma patients (especially those who do not go through many cycles of chemotherapy) do not suffer infertility, and actually see improved samples post-chemotherapy. So all is not lost, and chances are great that I will be able to spawn. Also, I'm excited at the possibility to carefully select my most awesome sperm to be used. Maybe fuse a couple together to create a SuperNick. Watch out, world.
And may that be the last thing I ever write on the topic of sperm.
Cottage Cheese
So I was humming along with my chemo recovery until late last evening when I suffered some killer back pain. Weird back pain. Back pain that originated in my extreme lower back and sort of radiated or pulsated through my abdomen and into my chest. It felt like I was using one of those machines that shocks your abdominal muscles as part of a "workout." Which is great, since I'd really like to work on my abs. But the pain got to the point where I was having trouble walking and talking, so I decided to head over to Cottage Hospital to get it checked out (which led to me trying to Google the phone number for cottage hospital and clicking on "cottage cheese" instead, hence the blog title).
Turns out everything is fine, and I don't need to do anything beyond pain management. After a number of tests and phone calls to oncologists, doctors decided that I was probably dealing with some neuropathic pain, which is a side effect of both cancer and chemotherapy. I'm feeling a lot of things that I have never felt before, and while I'm not going to make a habit of hitting up the ER every time I feel something, going from perfectly fine to barely able to walk in about an hour was rather unsettling.
You know what else is unsettling? This damn pain chart that I was supposed to use to "rate" my pain at various points during my treatment:
This thing cracks me up. First of all, there are faces on it, so why can't the nurses look at this chart, look at my face, and assign a number accordingly? Why do they keep asking me to rate my own pain? If you want me to do that, give me a mirror and I'll pick one out. Also, I thought my pain was probably a 4, but #4 looks like he has absolutely no clue what is going on around him or how to feel about it. So I went with "5," since I wasn't frowning and my eyebrows had not increased to comical lengths.
Sadly, I got to experience #10 when I realized I had not yet shaved my wrists and was left with this situation again:
But the bottom line: I'm fine. And now I know what "neuropathic pain" is. I'll now get back to my regularly scheduled blogging.
Turns out everything is fine, and I don't need to do anything beyond pain management. After a number of tests and phone calls to oncologists, doctors decided that I was probably dealing with some neuropathic pain, which is a side effect of both cancer and chemotherapy. I'm feeling a lot of things that I have never felt before, and while I'm not going to make a habit of hitting up the ER every time I feel something, going from perfectly fine to barely able to walk in about an hour was rather unsettling.
You know what else is unsettling? This damn pain chart that I was supposed to use to "rate" my pain at various points during my treatment:
This thing cracks me up. First of all, there are faces on it, so why can't the nurses look at this chart, look at my face, and assign a number accordingly? Why do they keep asking me to rate my own pain? If you want me to do that, give me a mirror and I'll pick one out. Also, I thought my pain was probably a 4, but #4 looks like he has absolutely no clue what is going on around him or how to feel about it. So I went with "5," since I wasn't frowning and my eyebrows had not increased to comical lengths.
Sadly, I got to experience #10 when I realized I had not yet shaved my wrists and was left with this situation again:
But the bottom line: I'm fine. And now I know what "neuropathic pain" is. I'll now get back to my regularly scheduled blogging.
Tuesday, August 31, 2010
RADONC!!!
I hit a 24-hour rough patch from Sunday morning through Monday morning, with a short reprieve on Sunday night because I watched the Broncos-Steelers game and the mere act of witnessing Tim Tebow complete a 12-yard out briefly sent my lymphoma into remission.
The difference between "feeling like hell" and "not feeling like hell" is absolutely night and day (I use the terms "like hell" and "not like hell" because I'm never 100%, and I won't be for quite a while. I'm always feeling some residual effects. It's just a matter of how bad they get). If I'm feeling ok, everything is good: I'm upbeat, I eat well, I can pretty much do whatever I like. But when I'm not feeling well, everything else starts to go. I'm snippy with others, I don't feel like eating (nausea and loss of appetite are two different things, and nausea really hasn't been an issue), and I don't really want to do stuff. And I can't even really explain what "hell" feels like, because 1) it's a collection of various ailments that I've never experienced before and 2) there are varying degrees of hell.
But I felt progressively better as Monday wore on, and I've been fine all day today. Since I was told that I might start feeling some of the negative effects after I was weaned off the Prednisone (I finished on Friday night), maybe this is my pattern. I'm sure each cycle will be a little more difficult, but this was tolerable. One of the things I have to remember is that I'm not going to feel well all the time. Which makes sense if you think of things like "I have cancer" and "In order to kill that cancer I must have a liter of poison pumped into me every two weeks." But the better I feel, the more I expect to feel that way all the time.
Anyway, in the midst of all this, I met with the good people from Radiation Oncology yesterday morning down at Henry Ford Main Campus. That is, after I stumbled upon their lair by navigating this hallway in the basement of the hospital...
And performing an intricate dance to appease the Sun Gods or something.
Radiation Oncologists (or RadOncs, as they call themselves) take care of the radiation aspect of cancer treatment. While chemo drugs have remained relatively stable over time (at least with my particular drugs), radiation therapy has become more and more advanced. We've come a long way from "wrap your body in tin foil and stand next to the microwave."
When the tumor board met to discuss my case, the course of treatment recommended was "R-CHOP, +/- Radiation." Which means maybe radiation, maybe no radiation. In short, the final call on radiation will be made down the road, after "intermediate staging," which will be a PET Scan after stage 3 or 4 of chemo.
Dr. Al-Katib (my second opinion doc) suggested that I see the RadOnc people prior to beginning/early in chemo so they could do their imaging stuff before my tumors go off and die. But apparently the RadOncs just use the imaging from my previous PET Scan, so yesterday's meeting was basically an exam and information session on radiation.
I'll be working with Dr. Jae Ho Kim, who was spoken of so highly by the nurses and residents that I thought he would be a cross between Mr. Miyagi and Pai Mei from Kill Bill. It was pretty close.
As for my potential treatment, I'm rather lucky because my cancer is 1) not near my organs and 2) not near my future children. Radiation is a localized treatment designed to prevent the regrowth of cancer cells in the area where the cancer first appears (chemo shrinks these large-scale tumors but also kills any microscopic bits of cancer throughout the lymphatic system). So any radiation treatment I receive can be targeted to avoid damage to any organs and minimize side effects to an awkward sunburn. "If we're not careful, we candamage your lung," the resident told me. "But we're careful." So that's good to know.
On the other hand, radiation therapy (like chemotherapy) can cause other long-term health problems (including cancer). It's a byproduct of the JUST KILL EVERYTHING approach to battling cancer. So doctors spend a lot of time trying to figure out just the right amount of treatment - not too much so as to increase toxicity, residual effects, and the potential for future problems, but not too little so as to allow for relapse.
The bottom line is that the exact course and duration of my treatment is still very much in the air. But I'm happy with this approach, given what I now know about the costs and benefits of different types of treatment. In my mind, I'm hopeful that I will be done with this by Christmas. I'm not going to go tempting the cancer gods by setting dates or issuing ultimatums or anything, but this is the first time I've even considered an end point to this. So that's a step. But still, much work left to be done.
The difference between "feeling like hell" and "not feeling like hell" is absolutely night and day (I use the terms "like hell" and "not like hell" because I'm never 100%, and I won't be for quite a while. I'm always feeling some residual effects. It's just a matter of how bad they get). If I'm feeling ok, everything is good: I'm upbeat, I eat well, I can pretty much do whatever I like. But when I'm not feeling well, everything else starts to go. I'm snippy with others, I don't feel like eating (nausea and loss of appetite are two different things, and nausea really hasn't been an issue), and I don't really want to do stuff. And I can't even really explain what "hell" feels like, because 1) it's a collection of various ailments that I've never experienced before and 2) there are varying degrees of hell.
But I felt progressively better as Monday wore on, and I've been fine all day today. Since I was told that I might start feeling some of the negative effects after I was weaned off the Prednisone (I finished on Friday night), maybe this is my pattern. I'm sure each cycle will be a little more difficult, but this was tolerable. One of the things I have to remember is that I'm not going to feel well all the time. Which makes sense if you think of things like "I have cancer" and "In order to kill that cancer I must have a liter of poison pumped into me every two weeks." But the better I feel, the more I expect to feel that way all the time.
Anyway, in the midst of all this, I met with the good people from Radiation Oncology yesterday morning down at Henry Ford Main Campus. That is, after I stumbled upon their lair by navigating this hallway in the basement of the hospital...
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| Comforting. |
And performing an intricate dance to appease the Sun Gods or something.
Radiation Oncologists (or RadOncs, as they call themselves) take care of the radiation aspect of cancer treatment. While chemo drugs have remained relatively stable over time (at least with my particular drugs), radiation therapy has become more and more advanced. We've come a long way from "wrap your body in tin foil and stand next to the microwave."
When the tumor board met to discuss my case, the course of treatment recommended was "R-CHOP, +/- Radiation." Which means maybe radiation, maybe no radiation. In short, the final call on radiation will be made down the road, after "intermediate staging," which will be a PET Scan after stage 3 or 4 of chemo.
Dr. Al-Katib (my second opinion doc) suggested that I see the RadOnc people prior to beginning/early in chemo so they could do their imaging stuff before my tumors go off and die. But apparently the RadOncs just use the imaging from my previous PET Scan, so yesterday's meeting was basically an exam and information session on radiation.
I'll be working with Dr. Jae Ho Kim, who was spoken of so highly by the nurses and residents that I thought he would be a cross between Mr. Miyagi and Pai Mei from Kill Bill. It was pretty close.
As for my potential treatment, I'm rather lucky because my cancer is 1) not near my organs and 2) not near my future children. Radiation is a localized treatment designed to prevent the regrowth of cancer cells in the area where the cancer first appears (chemo shrinks these large-scale tumors but also kills any microscopic bits of cancer throughout the lymphatic system). So any radiation treatment I receive can be targeted to avoid damage to any organs and minimize side effects to an awkward sunburn. "If we're not careful, we candamage your lung," the resident told me. "But we're careful." So that's good to know.
On the other hand, radiation therapy (like chemotherapy) can cause other long-term health problems (including cancer). It's a byproduct of the JUST KILL EVERYTHING approach to battling cancer. So doctors spend a lot of time trying to figure out just the right amount of treatment - not too much so as to increase toxicity, residual effects, and the potential for future problems, but not too little so as to allow for relapse.
The bottom line is that the exact course and duration of my treatment is still very much in the air. But I'm happy with this approach, given what I now know about the costs and benefits of different types of treatment. In my mind, I'm hopeful that I will be done with this by Christmas. I'm not going to go tempting the cancer gods by setting dates or issuing ultimatums or anything, but this is the first time I've even considered an end point to this. So that's a step. But still, much work left to be done.
More people who are solid
Good morning, friends. Good morning, cancer under my left arm. Good morning, new poll on the right side of the page.
My army, it grows:
Joe is Armenian. He has a problem with the Turks too. Fun fact: "Lymphoma" is Turkish for "Cancer of the armpit."
Amori probably would have done this anyway. But he's in.
Mr. Neely has the razor he used to shave his head concealed in his right hand. You'll never see it coming.
No, it doesn't.
My army, it grows:
Joe is Armenian. He has a problem with the Turks too. Fun fact: "Lymphoma" is Turkish for "Cancer of the armpit."
Amori probably would have done this anyway. But he's in.
Mr. Neely has the razor he used to shave his head concealed in his right hand. You'll never see it coming.
No, it doesn't.
Monday, August 30, 2010
There have been tremendous medical advances in the treatment of jet lag
I told you about how my body reacts to things like Coffee and Benadryl - often experiencing the opposite effect of whatever substance I consume was supposed to produce. But this weekend was ridiculous. I couldn't stop eating and I was not very interested in sleeping. At one point my schedule went "Dinner-Workout-Shower-'Pregame'-Bar-Coney-Home," which is pretty much a normal, non-cancerous night for me, minus the workout part. Reports of my demise have been greatly exaggerated.
Complete abstinence takes some getting used to, though. It's one thing to be a designated driver (stay safe kids!) and nurse a beer or two over a couple hours. It's another to go out and order multiple waters or a couple Sprites that taste like somebody ripped open one of my chemo bags and poured it over ice.
This whole cancer thing has completely reshaped my thinking, and it was really interesting to see how that has changed my perspective on things like "going out with friends" and "going to the bar." I'm more of a sit-down, small-group-of-friends bar guy anyway. I'd rather sit at a table with a couple people I know than pretend I'm a floor trader on the New York Stock Exchange every time I want a damn drink. So I'm uncomfortable at certain types of bars and in certain crowds to begin with.
But you add a whole new element when you are surrounded by literally hundreds of people who don't have to deal with I have to deal with. They don't have to worry about their appointment with a radiation oncologist on Monday, they don't have to carry nausea pills in their pocket, any pain they will feel the next day will be self-induced, and they can engage in whatever cancer-causing activities they wish because odds are overwhelming that it won't catch up with them anytime soon. At no point since my diagnosis have I had my own situation so starkly contrasted with that of others. If there is any point in all of this where I might have had a crisis of confidence, this would have been it.
And I didn't feel a thing. At least, no pity. No envy. I know, you hear the whole "Don't feel sorry for me" bit. But I mean I sat there, analyzed the situation, considered my options, thought "really, don't you wish things were different?", and thought, no thanks, I'm cool.
I don't mean that if I had a choice between "cancer" and "not cancer" that I would choose cancer for shits and giggles. I want nothing more than for this thing to go away, and that's what I'm going to do here in the next few months. But I mean this more in the "trading places" sense. As in, taking my life as a whole - the good and the bad - would I trade it? Would I trade my situation - nausea pills in my pocket, chemo sprite in my hand - to be just another guy at the bar out having a good time with his friends? And my answer there is an unequivocal "no."
I guess there are a couple reasons for this. The first is just natural: I've spent a good part of the past quarter-century setting up my life the way I want it, so of course I wouldn't want to change things up now. This is pretty much true for everybody. I'd rather be a lawyer than a doctor, so that's where I ended up.
The second reason is just my own sense of superiority/arrogance/satisfaction with my own life/whatever you want to call it. I spent seven years at the University of Michigan, so there's bound to be some of that. But I mean this: I went up to the bar to get whatever drink I was planning to order that would cause the bartender to look at me like I'm the dude from the Miller Lite commercial who comes up to the bar holding a purse. I was leaning on the bar in standard I'm-waiting-to-order mode. And some little grease monkey comes over. He's got two studs in his ears. He's shorter than me (I get ENRAGED when dudes shorter than me start shit. If there is anybody less justified in being a hardass, its somebody shorter than me). He's got some chick who looks like J-Woww and probably has more mutated cells in her than I do nibbling on his cubic zirconium studs. The girl is taller than him (pet peeve #2). He sees me, he knows I'm there, yet he slides against the bar with J-Woww and backs into me. The bartender comes over, and he chimes up and orders two shots and a Shirley Temple or something. I know I have cancer and all, but I just felt bad for that guy.
The third reason is probably the most "virtuous" reason: I'm lucky. Apart from the cancer thing, I really am. And when you stand amongst hundreds of people and have an opportunity to contemplate your current situation, you begin to realize just how lucky you are. How many people have been able to do what I've already been able to do in life? How many people have the family and friends that I have? People would kill for a lot of the things I have. So how can I sit around and pout because I can't have a few drinks or because I hit a bump in the road that I feel pretty damn able to deal with? What good would it do?
So the bar experience this weekend was actually quite therapeutic. Physically, I probably overdid it. In hindsight, I shouldn't have been hosting a "Safety at the ATM" seminar for women at 2 in the morning...
Or testing the effectiveness of my anti-nausea medication with a 3am trip to Leo's Coney Island...
But I rested on the Sabbath. So it's OK.
Weekend Update
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| Complete with Palin in honor of this weekend's Million Cracker March on Washington |
Me, this weekend: I'm still fine. I felt very good on Friday and Saturday, and a little down on Sunday, which was apparently to be expected as I finished up my Prednisone. I'll have a more detailed post on my weekend up later today.
Me, this week: Two appointments this week: Radiation Oncologist today and a meeting with Dr. Anderson (my primary doc) on Friday for a "checkup" type thing. Also, I'll get my blood drawn for the important white cell count. I'm meeting with the Radiation Oncologist today so they can do their imaging stuff on my tumors. The way I understand it, they prefer to do their thing before/early in chemo since chemo shrinks/kills the tumors. So they image now so they know how to aim the radiation later on.
As far as content for this week: I don't really know, but there will be things. I have some stuff queued up and I write little bits of things whenever they come to mind. So I'll have stuff up on my appointments, how I'm feeling, some other stuff, and whatever comes into my mind.
Donations: I try not to request donations but I will provide opportunities should any of you wish to do so. So: My friend Katie will be running the Walt Disney World Half Marathon in January, and is raising money to support the Leukemia and Lymphoma Society in my honor. If you wish to make a donation on my behalf, please donate to her run by clicking here.
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