Tim's Terrible Tumor

Dunzo

2006-07-01T12:42:00.000-04:00

I kind of doubt anyone checks this page anymore, but if anyone does, let me assure you I'm not dead. Quite the opposite. In fact I'm finished with cancer, my treatments wrapped up two weeks ago.

The reason for the lack of update has been that this last month has been by far the most difficult of the process, something I wasn't remotely expecting. Radiation is terrible, and the side effects left me without the will to do much of anything except try to sleep and count down the hours till my next codeine dose. Not a very interesting lifestyle.

[Side note: Watching England-Portugal as I write this. Did you see Wayne Rooney just stomp on that guy's junk? In cleats!? Gaaaaaaaaaah.]

I'm better now, back to work full time and beginning to eat normally again, although my taste buds are still a mess. You'd think having your taste buds destroyed would mean you just wouldn't taste. Not so. In my case I can taste things, but they taste awful. Sweet things taste horribly bitter....plain water, for some reason, tastes like saltwater. Ironically, the one thing that tastes normal is beer. I don't know if that's a good thing or not.

Compounding the taste problems are overall drymouth issues, since my right salivary gland(s) has been fused shut. The others are supposed to start kicking into overdrive, but I guess that takes some time. At the moment it means swallowing can be a challenge.

The Drs don't really have a good idea of how long this is going to last, but it sounds like it could be a while. One said four weeks, another said as long as three months before I feel 100% normal again. Bah.

The no-food diet is still working wonders though, I'm down about 25 lbs overall. Sadly, I think much of that is muscle, since I generally feel like a weak little kitten. At least my suits are fitting better.

Most of you have hopefully heard about the cancer-free fiesta and fundraiser Jenny, Chris and Aris have organized for the 15th, we certainly hope to see most of you there. If you haven't gotten the details or have any questions please shoot me an email.

And, on a last note, mom is apoplectic over Blogger's failure to recognize her comments. I don't get it either, but just FYI, sometimes the "0 Comments" indicator is inaccurate.

Ow Redux

2006-06-01T10:48:00.000-04:00

Okay radiation is becoming a serious pain in the neck, seriously. I haven't gotten a sunburn or any discernable symptoms on the outside of my neck, but the pain on the inside is just ridiculous. Rather than a normal sore throat, think of a massive canker sore running from the top of your mouth down to the base of your throat. Then pour lava on it. That's about where I am.

For this I'm on a pretty heavy regimen of Tylenol with Codeine, and "Magic Mouthwash," which is a concoction of equal parts Maalox (it coats, and counteracts acidic irritation), Benadryl (as an anti-inflammatory and mucous/goo reducer), Lidocaine (which is sweet sweet numbing relief), and Nystatin (which I'd never heard of but Google tells me is anti-Fungal. Gross, I don't know why I haven't learned to stop Googling these things).

With "Magic" in the title you'd think the stuff would work better.

The good news is that this condition is about the best diet you can hope for. Basically if it involves chewing, or has any discernable flavor, it's out, so I'm subsisting on yogurt and water. I'm really hoping this will help me shed the 'roid weight packed on during chemo.

The bad news is that sleeping is a challenge with a burning inferno in your throat, and OF COURSE another major side effect of radiation is fatigue, so I'm basically a zombie 24/7. Codeine really helps with that too.

Feeling Radioactive

2006-05-28T10:59:00.000-04:00

I'm about a quarter done with radiation therapy, and so far it's been completely uneventful, even pleasant. Really beats the hell out of chemo. The basic routine is that each day (usually before work), I head up to Sibley (where, as a valued customer, I get free parking now), get strapped onto a table and listen to a machine whirring for 27 minutes while I get zapped from all angles.

Strapped is an understatement. I have a custom-molded plastic mesh mask that goes over my face, neck and shoulders, which holds me in place to ensure the rays hit the same place each time. And how do you make a custom-molded plastic mask? You heat the plastic to 9,000 degrees so it's nice and bendy and then you press it to your FACE. That was unpleasant.

It's either that or markings on the skin. It looks pretty medieval. The table sits under a $3 million machine (I asked), which is enclosed in a vault, complete with lead walls and a 10-inch thick bank style door. All this to protect the outside world from that which I'm being subjected to. If I had claustrophobia issues, this would be my Abu Ghraib.

Strapped and zapped, day in day out. It's really not bad. Usually I just sleep.

I'm supposed to be getting some irritating side effects, like soreness in my neck and jaw, a severe sore throat and a bad sunburn. So far I haven't felt a thing, though they keep saying 'any day now.' I prefer to think I'm impervious.

Transitioning back to being cancer-free is interesting. My hair is growing back, which is nice. It's even coming back in new places -- suddenly I seem to be growing a mustache. Chemo has finally completed puberty for me. I also have to start getting out of the habit of ending arguments with "I have CANCER." Lately I've been shouting "I beat CANCER" a lot. It doesn't work as well.

Seriously

2006-05-15T10:09:00.000-04:00

Sales of quality Timphoma products have been abysmal....I think people might be skeptical about whether or not the stuff is real. I realize that's a legit concern, especially for those of you who know Mike. Let me assure you, this stuff is real, and real high quality.

You're too late for Mother's Day, but I've just placed an order for my household, just in time for summer graduations, Father's Day, Independence Day, whatever. Timphoma merch is perfect for any occasion.

I'm Back

2006-05-14T13:03:00.000-04:00

I apologize for the exceedingly long delay in updating this page, it's been a long long month, most of which I've spent reclining for one reason or another. To give you an idea of my habits the last few weeks, here's a post I started to write several weeks ago, but never finished. I titled it "Oxygen Depravation:"

"It's been a slow week. As I reported previously, Monday was Round 4 of chemo, which hopefully will be the last. Clinically speaking the tumors are gone (i.e. you can't see or feel them anymore), which means I'm likely cured. The next phase will be several doses of radiation therapy to the affected areas in my head and neck, which should give us the best chance of avoiding a relapse. So that's nice.

The downside is that after four rounds of chemo I am a weak little man. Each time it's taken me a little longer to bounce back from the fatigue brought on by the treatment, and this time is proving to be no different. The added bonus of this round, however, is that Monday's bloodwork revealed I'm a touch anemic, which is great, because the primary symptom of anemia is fatigue, "because organs aren't getting enough oxygen." Awesome."

After writing that I had to take an 11-hour nap, and I never got back to it. Should give you an idea of my level of activity the last four weeks (hopefully you also caught Jenny's comment on my epic inaction). Chemo fatigue is a serious pain in the ass.

As soon as my energy started to come back, and my stupid blood improved (eating redmeat helped -- lots of iron means lots of red blood cells), I submitted to another barrage of tests identical to what I had at the beginning (no MUGA this time, thankfully).

I also had a spinal tap, to test my spinal fluid for cancer (they didn't find any). The procedure itself really wasn't bad, which was a pleasant surprise. What was less pleasant was the 72-hour migraine that followed, which is a side effect caused by spinal fluid leaking from the wound created by the puncture. The leakage causes a pressure imbalance, which causes the ridiculous headache, and generally feels like your head is filled with fluid, although it's not, obviously. Strange.

The good news is there's nothing but good news. Each test confirmed that my cancer appears to be completely eradicated, which means the chemo worked exactly as it's supposed to, and I can move on to radiation therapy, which is basically a preventative measure at this point. Every day for four weeks (starting this Wednesday, the 17th) I'll head to Sibley, get strapped into a bizarre plastic mask designed to keep me still and keep the beams focused in the same place every time, and get zapped. I think it lasts something like 20 minutes each day, and by the 3rd week it's supposed to get pretty irritating as my skin, and whatever's underneath, gets burned to hell. That should be interesting.

It's expected I'll permanently lose facial hair in the affected area (there's not much to lose anyway), and my right salivary gland will probably be wiped out for good. They tell me the left one will likely kick in extra to compensate. We'll see. I may be drooling significantly less.

There's a major debate among oncologists at the moment over whether radiation is still necessary now that modern chemo drugs are so effective, especially since radiation comes with such sucky side effects. I got a lot of opinions on this one, Dr. G (my main oncologist) recommended radation because it's been standard for years, and there's literally decades worth of data on its effectiveness. Other doctors I spoke to argued that chemo is strong enough on its own to completely kill off the disease (and it has, probably), so why subject yourself to radiation. They may be right (I think they probably are), but the fact is they don't have the data yet, so I went old school and opted for radiation therapy. In ten years we'll probably learn that I killed my chances of ever sporting the ZZ Top beard look for no reason. What can you do.

The next question is whether to get a course of chemotherapy in my central nervous system. As I said, my spinal tap came back clear, which is good, and given the early stage of my cancer and whatnot the chances that there's anything in my brain or spinal fluid very very low. Nonetheless, regular chemo drugs don't cross the brain/blood barrier, so if there are two lymphoma cells floating around in my spine, they've been unaffected by the four treatments I've had, and that's of course a bad thing.

Dr. G thinks getting chemo injected into my spine (called 'Intrathecal Chemotherapy') is wholly unecessary, given that the chances are so remote there's anything going on in there. The docs at Johns Hopkins though, who I've gone to a few times for consultations and 2nd opinions, think eliminating that tiny chance makes it worthwhile, though they agree with Dr. G that the chances are indeed remote. I'm thinking on it. It would entail getting 4-6 spinal taps, every couple weeks or so (I think), and they say the side effects are actually pretty negligible, just that awful damn headache over and over.

So that's where we are. I'm still bald (I'll stop shaving my head after radiation, then we'll see what grows back), and I've gained 15 pounds since this fiasco began. I blame the steroids, and the fact that I've spent most of the past four months moving as little as possible. Other than that, I can't complain.

Another Good Cause

2006-04-18T19:31:00.000-04:00

I met Lauren, Jill and Sarah (friends of Todd) at their fundraiser/happy hour at Big Hunt last week. As it happens, the three of them are raising money to take part in upcoming marathon(s) as part of the Leukemia and Lyphoma's Team in Training. Not a bad cause. Lauren gave me her card and a link to her website, where you can read all about her efforts and her history with Leukemia and Lymphoma.

Lauren's less than $700 away from reaching her goal of $4,000 in donations before she heads off to run in the Rock 'N Roll Marathon in San Diego on June 4th. I feel good things will happen if my Timphoma.org readership can help push her over the edge. If you have any cash left over after buying your Timphoma.org trucker caps, help Lauren and her teammates out.

Oh, and....

2006-04-18T17:37:00.000-04:00

If you're missing some of the references on the t-shirts, you're not watching enough Yacht Rock. Check it out, it is truly life-altering. You'll never listen to Michael McDonald the same way again.

Disclaimer

2006-04-18T17:29:00.000-04:00

Ok, I should have checked the latest rendition of the Timphoma merchandise page Mike's created, but let me just warn you all there is some PG-13 content on the site, namely a creative rendition of some mythological copulation. Fair warning.

Mike's plan to cash in on misfortune

2006-04-12T17:10:00.000-04:00

First, here's a little eye candy from yesterday's 4th (and final, hopefully) round of chemo....

Pure misery, huh?

Mike has come through for me, and come up with a shameless method for capitalizing on my mutant cell growth. He actually came up with this weeks ago, and thus far I've failed to share it, mainly because I wasn't actually 100% certain he was serious (oh he was), but also because I thought maybe if I held out he'd get angry and therefore inspired to come up with more and more ridiculous concepts until I could deny his efforts no more. That actually worked.

So, here they are: my own line of Timphoma-inspired crap at http://www.cafepress.com/timphoma.

Mike really does deserve all the credit for these magnificent products, and I plan to order several of them. He even claims I'll see a chunk of the profits, but, well, I'm not cancelling my health plan just yet. Enjoy, I'm sure these high-quality goods will remind you all fondly of that time I had cancer. Please also feel free to post all comments, compliments, complaints, etc. below and I'll be sure Mike bears the full brunt of all of them.

Injustice!

2006-04-12T16:39:00.000-04:00

What is keeping me so busy that I never update this site? Not a lot. General laziness really.

Had to comment on this story though. Yes, it's very sad that this woman faked cancer and conned several poor souls out of some cash. But read on -- she got $35,000 in donations!!! $35,000!!!

Now, don't get me wrong, I have used my petty wee tumors to cash in on some serious generosity. I have received loads of carepackages, gift certificates, gift cards....the people in my life are way too generous with me. But at this moment I feel like a complete amateur. I didn't even realize I could be using this disease to generate some serious cash flow, and here I am nearly cured (hopefully).

What a waste. Maybe it's not too late to set up a Paypal account.

Lymphoma is crazy sexy

2006-04-05T22:41:00.000-04:00

Just ask Jenny. Or this guy:

"Doyle was online at the time awaiting what he thought was a nude image of a girl who had lymphoma, Polk County Sheriff Grady Judd said"

That is just creepy.

Another day, another $6 grand or so

2006-03-27T20:00:00.000-05:00

Round III is behind us, so far so good, totally uneventful just like my prior round. Obviously everyone's experience with treatment is different, but knowing what to expect helps more than anything, it keeps me from being paranoid or stressing over minor details. The other thing I've learned is that having coffee in the morning is a big help, the diuretic effects gets things flowing and keeps me peeing like a racehorse every 45 minutes or so. That's a good thing, otherwise the IV liquids stay in my system and I end up feeling stuffed and uncomfortable. That was Round I.

Too much detail? Perhaps.

Tonight I feel great though, still enjoying all the hype surrounding UCLA's Final Four status....both Scott and Alison have suggested I take more of an active media role in promoting UCLA's case as the true sympathetic favorite left in the tourney, despite all the gushing over Mason's improbable berth and LSU's proximity to the Wrath of God. Personally I think this is a great idea, there should be more of me in major media outlets in general, and with my current ailment I'm all the more sympathetic. Just look at how miserable I am:

That's us at Seth's birthday party Saturday night. What's in the cup? Warm milk. Leave me alone.

There is a God, and apparently He reads this blog

2006-03-26T09:46:00.000-05:00

Yeah yeah it's been forever. Sorry.

Just as I demanded in a previous post, the Bruins are on their way back to the Final Four for the first time since 1995, when, oh yes, they won their 11th NCAA title, by far the most of any school in history (Kentucky is second with a mere 7). A record of Cal Ripken-esque proportions.

They beat Memphis last night to advance, but really Thursday night's game against Gonzaga (they came back from being 17 points down, and finally went ahead with 9.2 seconds left) is what made me realize that the Lord himself must be watching out for me, and is likely wearing blue and gold while doing so.

So I'm happy. And I feel totally fine. UCLA plays LSU (who beat Texas yesterday, sorry mom) next, and I'm sure the entire world will be rooting for them, because their school got pummeled by Katrina and they're so inspiring and blah blah blah. JUST REMEMBER THIS: there is a young man out there battling cancer who would like nothing more than to see his beloved team make it happen, because really, who knows what may happen tomorrow.....

(and yes, I mean me)

Actually this is what will happen tomorrow: Chemo Round III. Wish us luck, hopefully this one will be as easy as the last and I'll be fully able to scream my head off like an ass during the championship games.

The really perplexing thing is that my brackets aren't doing that well in my office pool. I don't get that at all.

And I didn't win Powerball last night. Again.

The Jerk Store called, they're running low on mass-murderers and hypocrites

2006-03-11T10:40:00.000-05:00

(That's a Seinfeld reference, Mom. Seinfeld was a popular 1990's television show.)

It is a gorgeous day in our Nation's Capitol today, sunny, 60 degrees, getting up to 70 later on....it's so nice out I think I'm going to stroll down to my office and start trying to catch up on the mountains of work I've been neglecting this week. I shudder to think what awaits me, but hopefully the quiet of a Saturday afternoon will make it a little more bearable.

But because it's the office, I must procrastinate as long as possible, hence a quick update.

Two things from today's paper which caught my attention: one, Slobodan Milosevic has made a big splash on day one of NFL Free Agency by turning up dead. Couldn't have happened to a nicer guy, Slobodan amigo you got off lucky.

Second, this story about made me fall off the couch. Claude Allen was the point man at the White House for a wide range of domestic policy campaigns that I find, well, dumb, and generally had a long history of being a self-righteous a**hole who found himself in a position to affect massive amounts of domestic spending on various ideological crusades. Before the White House he was a senior political appointee at HHS, where he was the guy who had the CDC remove all mention of safe-sex materials from its website, and vigorously went after wacky AIDS-advocacy organizations that suggested using condoms might help prevent infection, because Mr. #1 Target customer apparently knows better than medical professionals how to combat disease. I would love to hear his insights on cancer. Maybe he could help me with my Rituxan bills.

He was also among the leading advocates within the Administration for the quintipling (or whatever) of federal funding for abstinence-only education (which doesn't work, and has never seemed to work, say my communist friends who deal in trivialities like facts). I don't claim to be an expert on abstinence-only, but Christopher is, and as such Christopher dealt with Allen here and there. His impressions were not favorable, but damn, who would expect the guy to be a petty criminal? Unbelievable.

He was even nominated by the President to be a Federal Judge on the 4th Circuit in 2003, though those damn Democrats in the Senate asked too many questions ("Has he broken many laws lately...?") and his nomination was withdrawn. For Heaven's sake, where do they find these guys?

I know, before I go too over the moon with schadenfreude (it's not like he shot a guy in the face and neck with a shotgun, right?), it's obviously very sad that such a succesful and I'm sure well-respected individual within his community would have such issues that he would feel above paying for his purchases like normal folk. The guy needs some help. For he and his family's sake I hope he gets it, and, should that help arrive in prison, I hope he thanks his lucky stars that this great nation has a public health infrastructure committed to helping people who need it, despite his best efforts.

Jerk. He's the reason we all have to wait in those stupid lines to have our receipts checked at Target.

Gale Norton also resigned this week, but that of course has nothing to do with the years of rampant impropriety at the Interior Department involving Casino Jack Abramoff and his boys. I don't really have much to say about that....but of course Gale knew nothing about the shenanigans being carried out under her watch. Of course not. Everyone in this Administration is squeaky clean.

Chemo Part Deux

2006-03-10T08:58:00.000-05:00

This last Monday brought Round 2 of Chemo, and I have to say, this round has been great, I could do a thousand of these. Aside from the usual fatigue I haven't had any of the side effects of round one, no real discomfort whatsoever. My only aggravation has been from the acute cabin fever that's set in after lying around all week, but I think it's been worth it, since I can move and everything this time. Major bonus.

On Wednesday I got fed up and finally broke out the razor to get rid of the shedding animal on my head, it took some doing (about an hour probably), but I am now sporting the full Lex Luthor look, which I am much happier with. Very aerodynamic. I'll put up a new picture or two shortly.

And that is everything I've accomplished this week. Really, I am going nuts. Today I'm going to try to occupy myself a bit by writing a bit more, and I may get lunch. Big day. Wish me luck.

Mange

2006-03-05T23:02:00.000-05:00

So the hairloss hasn't proceeded as dramatically as I initially expected. While it was pretty alarming to have the first few clumps come off in my hand, a lot of my hair is actually showing some admirable resistance....for once....so instead of a nice clean parting of ways, I look like I have a serious case of mange. Terribly attractive. Here's the current status:

Can't see much from the front, I pretty much look like me. From the back though, what can I say. I look like a damn leopard.

So yeah, I'm wearing a lot of hats these days, and lately a lot of UCLA hats, because as we all know, the Bruins clinched the PAC-10 this week, and if there is any justice, will give me at least a Final Four performace to cheer for over the next month.

As long as we're on the topic of hair, I've finally posted the pictures from our head-shaving fiesta of three weeks ago, so you can all see how badass I looked with a mohawk.

Josh and Steph were kind enough to host the event, and Josh even went so far as to shave his head himself, which I'm not sure counts because he actually looks pretty good without hair. To repay their hospitality we drank a lot of their beer, and Edward got friendly with Farley (the dog). Enjoy!

It Begins

2006-03-02T14:05:00.000-05:00

Mark this date -- 17 days after round 1 of Chemo, my hair has begun falling out....

I shaved it before chemo, almost three weeks ago, so I have about a quarter inch of fuzz up there now, which is quickly bailing on me. So weird, running my hand over wipes it right off. It's like a Nair commercial without the Nair.

The timing is a bit unfortunate. I'm sitting at my desk at work, and OF COURSE I didn't bring a hat today. Looks like I'm going to have to sport the au-natural chemo look for the rest of the afternoon. Otherwise I'm not so bummed about losing my hair, it was on its way out before the chemo, and what little I had before will likely grow back.

I just wish it could have been a bit more subtle. Cancer is so inconvenient.

Nuthin'

2006-02-28T20:48:00.000-05:00

I realize there has been a dearth of updates lately, mainly it's because I've been feeling pretty good lately and haven't felt much like dwelling on the mundane details of the whole cancer thing. Also Jenny's been sick so we've been focusing on her health issues for a change, which has been refreshing.

Chemo round two comes this Monday, after which I'll have several days of lying around feeling like hell, and hopefully a bit more prolific. There are also several pictures I intend to share shortly, including my personal photo diary from my trip to the fertility clinic (a.k.a. the Spank Bank), so don't give up on Timphoma just yet.

Charlie sent me this, by the way, I was one of the lucky 7,000 to receive the errant emails mentioned in the story. Charlie thinks I should sue.

Ow

2006-02-23T14:35:00.000-05:00

Today I seemed to have picked up some kind of virus, which is doing very little except giving me a splitting headache. Dr. G (my oncologist) says it's no big deal, I've had two blood tests in two days, both of which revealed I have 'perfect' blood (the Doc's words), so I should just take it easy and wait for it to go away. In the meantime I've taken four tylenol and two codeine, which did exactly nothing. I'm switching to Advil.

Dr. G pointed out the hilarious irony that while we can treat, and probably cure, lymphoma, we can do nothing to cure the pesky virus that is trying to split my skull in half.

Still, it's nice to know I have perfect blood to go along with my marathon-runner's heart. Before I got cancer I had no idea I was so healthy.

Drugs Part II

2006-02-21T21:09:00.000-05:00

As I said, treatment consists of a handful of cancer drugs, and a larger handful of drugs to counter the cancer drugs. At the outset they give you a long and alarming shpiel about the litany of side effects you can expect with chemo and a list of stuff to keep on hand to keep yourself functioning. Some aren't all that exciting, but here's the rundown:

1. Allopurinol -- this was the first drug I started taking, basically it keeps the kidneys chugging along. Cancer cells release uric acid as they die, Allopurinol prevents the acid from causing gout. I don't really know what gout is, except I don't think many 20-somethings get it. I think I read Benjamin Franklin might have had it.

2. Prilosec -- pretty basic, chemo kills good protective cells in the digestive tracts, this stuff keeps stomach acid from burning a hole in my tummy.

3. Neulasta -- definitely one of my favorites. I'm going to kill damn near every one of my white blood cells during this ordeal, and Neulasta is a tiny (4cc) shot I take 24 hours after a chemo treatment which, as I understand it, makes my white blood cell production go into overdrive. Two things I especially like about this drug: one, I get to inject it myself, and that just sounds fun. I plan to do stirring recreations of great self-injection moments from the silver screen (The Rock and Trainspotting spring to mind). Second, each shot costs something like $3,200.00, and I just like the idea of spending that much on myself.

Oh -- and Neulasta is made by a great company with very generous employees. I like to think I'm giving back.

4. Tylenol, with and without Codeine -- I get both kinds, just in case. One of the drawbacks of the Neulasta is that it makes your bone marrow expand as it works overtime to create white blood cells, and that pretty much feels like your bone marrow is expanding. I especially feel it in my spine. This is where codeine comes in handy.

5. Biotene -- this stuff is awful. It's a special mouthwash to keep things healthy and clean once the good cells on the inside of my mouth get wiped out, and I guess it works, but it tastes and feels exactly like saccharin flavored saliva.

I'm told I should expect to get mouth ulcers, which sound super. At that point I'll get a prescription for another special mouthwash that has lidocaine in it, which should numb things enough so I can gum my foods in peace. If that stuff tastes worse than the Biotene I may give up and start rinsing with black tar heroin.

6. Benadryl -- I don't really get this one. It's not for allergies (they take care of that with the full liter you give on chemo day), instead it's recommended as a sleep aid, because us cancer patients need our rest. Can't really argue with that, I sleep like a baby on Benadryl. It's not like I have the sauce anymore. Thanks again Pfizer!

7. Immodium -- chemo screws with your digestive system. Let's leave it at that.

8. Metamucil -- then again, sometimes it just shuts it down.

9. Desenex and Gold Bond -- when you have no white blood cells, infections can be a bitch. These help ward off jungle rot, and sprinkling Gold Bond around gives a fun tingly feeling.

10. Eucerin -- skin cells divide quickly, and as such they get walloped in this process too.

11. Tucks Medicated Pads -- too offensive to link to. You know what they do. Just think for a moment how awful an infection in that area would be.

I may have forgotten some, but those are the basic contents of my personalized chemo kit. I also got an expensive electric razor, since I guess I'm less likely to cut myself with it. Not sure that one was worth it or not.

Drugs Part I

2006-02-18T19:22:00.000-05:00

Here's where I'm going to go over my therapy and try to broadly explain what's going to happen. As all of you ought to know, I am no Doctor, and I don't understand much about the medical aspects of what's happening to me. I know a lot of people would probably want to become amateur oncologists after getting their diagnosis, but in my case, I'm just not that interested in every last detail. I trust my Doctors, the broad information I've found has assured me my prognosis is great, and reading more into the what-if scenarios and percentages would probably just drive me nuts.

So, as you're reading this, just bear in mind I'm a complete amateur. I guarantee I will make lots of mistakes and screw up several details.

What I've come to vaguely understand is that having cancer means my own body, or stupid parts of it, are trying to kill me. To put an end to that, I'm undergoing chemotherapy, or, injesting gallons of cutting-edge biochemicals that are going to (hopefully) seek out and kill the stupid cancer cells. In doing so, they are going to kill a sh*tload of cells I'm actually quite fond of, like those responsible for my hair, digestion, immunity and fertility, to name a few. To deal with that, I am going to take dozens of additional drugs to counter the drugs trying to kill the cells trying to kill me. I think it breaks down to something like 5 actual cancer drugs and 25 drugs to combat the cancer drugs. Hooray for 21st Century medicine.

Anyway, here's how I'm going to get better:

Several people (myself included, at first) figured my tumors would be removed surgically, with some followup chemo or radiation therapy to kill the leftover cells. That's not happening in my case, as far as I know because chemo is nowadays just that kickass at killing lymphoma on its own. I think in some extreme cases (like if the tumor was choking off my windpipe) surgery might be called for, but mine isn't that dire.

So, chemo it is, and in my case, I'm undergoing CHOP-R chemotherapy, which I'm told is pretty much the standard treatment for non-Hodgkins lymphoma these days. I have no idea where they came up with the name "CHOP-R", I figured it was an acronym, but "CHOP-R" doesn't really correspond to the drugs I'm taking. Weird.

It works like this: every three weeks I go to the cancer center, plop myself down in a barcalounger, have an IV started and spend 8-9 hours sucking fluids out of various IV bags, which a nurse changes now and then as they run dry. The first dose is a bag (a full half-liter, I think) of Benadryl, which feels exactly like main-lining a half a liter of Benadryl. This is to counteract any possible allergic reactions to the cancer drugs, specifically the mice protein they use to make the drugs. I guess if I had a mouse allergy it could be problematic.

Yes, the whole mouse protein thing is unsettling, another reason why I don't read too much into this stuff.

So, after taking enough Benadryl to lull me into a comfortable coma, they begin the heavy stuff, the actual CHOP-R drugs, which are: Rituxan, Cyclophosphamide, Adriamycin and Vincristine. In between all those I have a few rounds of saline to flush everything though, and after I take Predisone (steroids) for five days.

I couldn't tell you what exactly each of these do, but the links I've included probably do. All I was told is that they each target and kill cancer cells in different stages of production. Rituxan is the new one, and by all accounts the wonderdrug that has revolutionized lymphoma treatment (thanks Genentech!). Also, Adriamycin is red, and it turns your pee red. I found that hilarious. And Prednisone I thought would give me all kinds of sweet roid rage, but mainly I was just tired.

Next I'll get into the drugs that counter the chemo drugs --

Mike Cracks Me Up

2006-02-14T22:56:00.000-05:00

This was one of the first messages of support (?) I got, from Mike. Mike decided to share some words of inspiration from a Martin Short film:

I suppose you could say that everyone has an El Guapo. For some, shyness may be an El Guapo. For others, lack of education may be an El Guapo. But for us, El Guapo is a large ugly tumor who wants to kill us! We won't let him.

Hopefully at least some of you get the reference. I feel better already.

MUGA Fucka

2006-02-14T19:47:00.000-05:00

As you might imagine, the last few weeks have brought a steady barrage of tests to determine the size and scope of my illness. Here's a rundown of the tests I've had, in order:

1. MRI. Not bad at all, you lay in a plastic tube and listen to the radio, if you can hear it over the pounding din of the machine, which sounds like really bad house music. I fell right asleep. The MRI gave us our first image of Terri (the tumor), which looked like a warped golfball.

2. Fine Needle Aspiration (FNA) with biopsy. This sucked. It involved checking into the hospital (technically it's outpatient surgery, although the actual procedure only takes about 20 minutes), taking a complete history, hearing my options about living wills and do-not-resuscitate procedures (seriously) and putting on a ridiculous hospital gown, complete with booties and a "PROPERTY OF SIBLEY HOSPITAL" stencil. Then I get carted off to the cat-scan room, where my neck was injected with an anesthesia that I swear to God felt like gasoline mixed with lemon juice under my skin. THEN the fun begins with a needle being injected into the largest of my lumps, wiggled around a minute while making some really objectionable noises (imagine a meat thermometer in a piece of gristle), taped in place and left there for 5-10 minutes while the cat scan takes a bunch of pictures to make sure it's in the right place. After all that, the Dr. pushes a button and extracts a tiny bit of tissue through the needle to be biopsied. They make you lie around for an hour or so to make sure nothing goes terribly wrong (the lump they injected was basically underneath my carotid artery, so I guess bleeding profusely was a legitimate concern. I was mainly bored.) Ultimately the FNA confirmed my diagnosis, so the next tests were to prepare me for treatment and determine how far the disease has spread.

3. Which brings us to the MUGA, or "Multigated acquisition scan." This was maybe the most aggravating part of the whole experience, and the inspiration for this posting's title. The MUGA is fairly non-invasive, it's just a heart scan to confirm your heart is strong enough to undergo treatment, and give the Dr's a baseline to determine if there's any damage following chemo. By all indications this one should have been cake, but in my case, I had a guy who I can only assume was the night janitor performing the procedure. Christopher was present for this one and was emailing Jenny with an excellent blow-by-blow, which I'm copying below:

2:26

So I'm sitting here watching this procedure... Thought I'd keep a running commentary going.

Tim has his blackberry on but he doesn't feel like writing at the moment on account of the catheter sticking out of his arm.

The technician who just "stuck him" bore a striking resemblance in appearance and behavior to the lawyer character on Scrubs -- which didn't exactly inspire confidence in his medical abilities. Neither did the fact that the first words out of his mouth were "I hope I'll only have to stick you once, but sometimes, you know, I miss."

Turns out he didn't miss the vein on the first try, but did manage to wiggle the needle around enough to cause tim some serious discomfort. Really, it looked like the guy was trying to scrape the cholesterol off the inside to tims vein using the needle -- he was jerking it around wildly. All the while tim’s eyes bulged in his sockets.

Then there was an issue of choking off the catheter after he had drawn some blood. He injected some saline to clean the tube, but before he was able to clamp it off, Tim's blood went shooting up the catheter. The tech says "uh-oh" in an odd deadpan as he runs out of the room for more saline.

Needless to say, Jennifer, you would have really enjoyed this.

At the moment tim's blood is being blended with some toxic waste so that in a few minutes it can be injected back into his system and photographed with a Geiger counter. It may sound like the back-story of a Marvel Comic series, but no, it's actually just a MUGA exam.

I'll send an update after the next stage.

2:45

Our favorite lab tech is still at it. Removing the catheter he somehow managed to cause more pain than when he put it in. Tim is cracking up the whole time he's pulling it out, just because it's so absurdly painful.

But because tim is laughing it takes about twice as long to get it out. Part of the problem is that the lab tech thinks that Tim's laughing at some colored gauze that he's about to apply. This causes the tech to stop halfway through the removal to demonstrate the stretchiness and adhesiveness of the gauze, meanwhile still hanging onto the end of the catheter while he's gesturing.

Finally, we're ready for the scan. Presumably this part will go smoother. doesn’t look promising.

3:05

Tim is strapped onto a gurney with some EKG leads sticking out of him like he’s in the matrix. And a giant Geiger counter is mounted to the left side of his body, poised to photograph the radiologic waste coursing through his heart. However, something’s not working. the machine can’t synch up with his heart beat. Another lab tech enters to see if she can help.

Through all this the EKG shows his heart rate steady at 59 BPM.

3:13

The two techs can’t seem to get a clean reading on the MUGA, mostly it seems, because they can’t get it to match up with tim’s heartbeat. Tim at this point begins to panic. He askes (casually at first, but it is getting more direct and insistent) “is there something wrong with my heart?”

No direct answer to this question. Tech number 2 says something about a possibility of it being an arrhythmia, but clearly has no evidence to support this possibility. Behind her, and out of Tim’s view, I can clearly see tech 1 struggling with a frozen computer.

However the EKG monitor, which only I can see, is registering Tim’s concern. Heart Rate:75 BPM.

3:25

They find an EKG technician to look at the placement of the leads. She feels tim up in a way that makes me feel jealous, and then decides that techs 1 and 2 have no clue what they’re talking about. She finds that Tim’s heart rate is regular (around 80 BPM when she had her hands on him), and that it must have been a computer problem that was reading irregular heart beats. This should come as no surprise, as Tech 1 is still slamming the mouse around in about the same way he placed the catheter in tim’s arm.

3:45

Tim is now on another machine. Accepting the obvious, the techs concede the fact that the first machine just isn’t working right. The new one seems much better.

The first two readings are clear and Tim’s free to go.

Before releasing us, the Technician tells tim that he has the pulse of a world class athlete, specifically Bjorn Borg. Well not exactly it turns out -- Bjorn’s pulse was more like 40 BPM.

but needless to say, Tim’s pulse did kick ass and wear headbands in the 70s. So they had that much in common.

That's pretty much how it went down. I would only say, in my defense, that I have been diagnosed with CANCER in the last couple weeks, leading me to believe that some horrible heart defect was not outside the realm of possibility. Obviously I should have realized I was in the hands of complete idiots, but what can I say, I've been a bit punchy the last couple days.

Oh, and the pain caused by the removal of the catheter was in large part due to the 40 pieces of tape the guy put on it to hold it in place while he twisted it back and forth in an effort to hit EVERY last nerve in my arm. He decided to pull the tape off one hair at a time. I don't know why that made me laugh so hard.

The EKG lab tech was cute. Calmed me right down.

4. PET C/T. This was the last of the barrage, the one which tells us how far the malignant cells have spread. Lymphoma is a systemic disease; it stands to reason if you have a lump in one lymph node, you'll have it in others. To find out they pump you with radiation and see what glows under a cat scan. It's fairly interesting actually, you fast for 8 hours or so, during which time your tumor(s) become starved for sugar, so they mix up a sugar solution and pump something radioactive in it, and then inject it into a vein. The fun part is watching them inject it. Since it's radioactive the syringe is incased in a massive lead canister. It looks quite dramatic. Then, you're left to lie on a barcalounger in a dark room in a general state of sensory deprivation. The trick here is to keep your brain from getting too excited, lest it steal too much of the radioactive sugar goop. I thought soothing thoughts.

After 45 minutes of lying in the dark you're taken to the cat scan machine, for 45 minutes of shooshing back and forth through the plastic tube, lying very still. Not too bad. Very dull. The end brings a little excitement, they inject you with some stuff to get a "contrast" image, which they warn you, feels a bit warm once it starts flowing. And how. It feels like hot tea is being poured directly in your veins. Not painful, but weird. And -- they specifically warn you that when it hits your, er, bathing suit area, it feels remarkably like you've just completely soiled yourself. And believe me, it does. They tell you this so that you expect it, and don't actually begin to soil yourself when the feeling starts. Again, not unpleasant, kinda strange.

The good news is that all these tests showed that, except for a little cancer, I'm pretty healthy overall. Like Chris wrote, I have the heart of a marathon runner, which as you all know, is ridiculous. And, the PET/CT revealed that my lymphoma is confined to the lumps in my neck, nothing else anywhere whatsoever, which is great news. Based on that, my Dr. feels my cancer is a Stage 2, on the universal cancer scale of 1 (not bad) to 5 (bad). He even said some Drs. might consider it a 1-E. I don't know what that means.

Next up: Drugs.

Opinion #1

2006-02-13T23:14:00.000-05:00

I warned you, here is one of the several radical views I'm known to spout off from time to time: the President doesn't think I need to be cured.

Well, not me personally (I think), but myself and millions of fellow sufferers. How do I know this? Because he wants to cut funding for the National Cancer Institute by $40 million, or, to put it in technical terms, about 8 seconds in Iraq.

Now now, I know HE doesn't want to do this, policy is all about good stewardship of American tax dollars, and we certainly don't want to be wasteful or irresponsible, and if those high rollers at the NCI are using $100 bills to light their bunsen burners, then to hell with their funding. We're at war, we're facing the highest deficit ever, spending cuts are inevitable.

But, in fact, that's all crap. The everyday advancements made by NCI are astounding -- these geniuses are literally on their way to CURING CANCER. And not just for me, I have pathetic cancer, my cancer will be no problem in 6 months. But, children with leukemia? Mothers with breast cancer? Gone.

Of course, at that point we'll face another catastrophe figuring out how to pay for all these people, but in the meantime, we are saying we should make less progress curing cancer, less progress on international HIV/AIDS, heart disease, premature birth, etc. because taxes are (were?) too high.

Awesome, I love that attitude. But then again I have a tumor in my head.

Cancer hopes it doesn't get this woman

2006-02-13T22:37:00.000-05:00

There are literally hundreds of people keeping me alive (which is nice), and I'm certain I won't name them all, but everyone adores Jenny, so here she is. Jenny is my special lady, and suddenly my live-in nurse, a role she is, by all indications, loving. All of the sudden I am medically required to listen to her when she orders me to generally stop behaving like an ass. Giving up my ability to be an idiot is something I'm not used to, but Jenny seems pretty comfortable with it. If the cutting-edge biotechnology I'm consuming liters of doesn't kill the cancer, I'm confident Jenny will with pure sass.

I can't remember if we had the diagnosis yet or not when we took this picture, but you can kinda see my lovely lumpiness in it. How adorable.

[Update: Jenny has since pointed out that the date of 1/21/06 printed on the photo should give a clear indication that this was taken exactly 10 days before my diagnosis. Thankyou very much Ms. Smartypants.]

Jenny has been keeping most of our friends and family updated with her epic emails, which are highly informative and excellently written, so I'm going to copy two of them here. They cover most our bases.

Here's the first, which she sent to friends and family on my birthday:

Dear Friends and Family-

First off, thank you all so much for your thoughts and prayers and well-wishes. You have no idea how much your support means to Tim (and me). I apologize in advance for the mass email, but we we wanted to get information to each of you quickly, and this seemed the best way.

We just got back from Tim's first Oncologist appointment, and it went very well. Tim has been diagnosed with "diffuse large cell lymphoma," a very common and treatable/curable type of lymphoma, and is believed to be a Stage 2. The doctor believes the cancer is localized to the lymph glands in the neck, but because lymphoma by definition is a systemic disease, they need to run some additional tests be be sure it hasn't spread. Tim will have the same treatment (chemotherapy) regardless of staging-- although if it's found to be a Stage 3 or 4, his treatment will occur more frequently and continue over a longer period of time, but consist of the same drugs. At this point, we expect him to start his treatments within 7-10 days, and the whole process should take about 3-5 months. He's almost definitely going to lose his hair, so he's happy to shave anyone's head who wants to do so in a sign of solidarity. (Hat shopping, anyone?) He likes and trusts his doctors so far, which is a great thing. We had a lot of questions, and the doctor took the time to answer each one, so we feel he's in very good hands. Tim is extremely positive after meeting with the doctor, and is looking forward to getting treatment and being healthy again by summer time.

Since I know most of you have been scouring the Internet for information over the past few days, I wanted to share a few sites with you this time that may help you to learn more about this disease.
Lymphoma Research Foundation: www.lymphoma.org/
Lymphoma Information Network: www.lymphomainfo.net/
Leukemia and Lymphoma Society: www.leukemia-lymphoma.org/
Lymphoma.com: www.lymphoma.com/

Thank you again for your love, support and concern. If you have any further questions about his diagnosis, treatment, etc. feel free to ask. I'll also keep you posted as his treatment progresses.

On a side note-- Today is Tim's 27th birthday! Here's to a happy and healthy year :)

Much love,
Jenny and Tim

I told you they were epic. Here's the second, which she sent to coworkers last week. Most of it is repetitive, but still entertaining (I think):

Dear friends-

As you're all now aware, Tim has recently received some bad news: he has cancer. K indicated in a chat with me yesterday that some of you might be feeling starved for more information, so here is the full scoop, whether you want it or not! We apologize in advance for not getting detailed information to you sooner, but after numerous tests and doctor appointments, he finally has a definite diagnosis, an excellent prognosis, and some information he asked me to share with you. But before I get into that, he wanted me to let you all know how much he appreciates your thoughts and prayers and well-wishes. So please keep them coming!

Diagnosis: Tim has been diagnosed with "diffuse large B-cell lymphoma," a very common and treatable/curable type of lymphoma, and is believed to be a Stage 2. (Cancer stages indicate the severity of the disease, on a scale from 1 (least severe) to 5 (bad news)). At this time, the doctors believe the cancer is localized to the lymph nodes in his neck, but because lymphoma by definition is a systemic disease, they will need to run one more test (a PET-CT scan, which he will have this Friday, 2/10) which will assist the doctors in determining whether the cancer has spread, and where it might have spread to. This will confirm staging, and will also be useful to the doctors if radiation therapy is determined to be necessary.

Treatment: Tim's lymphoma is an "aggressive" form of cancer, which means the cancer cells are dividing and spreading quickly, and will require immediate treatment. The good news is that in most cases, aggressive cancers respond better to treatment because the drugs used to treat cancer target fast-growing and rapidly dividing cells. So the faster the cells turn over, the better the drugs can work. Tim will have the same treatment (chemotherapy) regardless of staging--although if it's found to be a Stage 3 or 4, his treatment will occur more frequently and continue over a longer period of time, but consist of the same drugs. (If you're interested in the list of drugs, let me know.) Radiation therapy may also be given after the conclusion of chemotherapy, although at this point the doctors aren't sure whether radiation is necessary.

Symptoms and Side Effects: Tim has very few symptoms at this time, although the tumor in his tonsil has ulcerated and is causing severe pain. (When Tim asked "is there anything I can do to treat this tonsil?" the doctor responded "Chemo!" - and gave him a prescription for codeine.) The tumor in his neck is also large enough that he can't button the collar of his dress shirts. (Nice excuse Tim- and we all just thought he was sloppy!) There are many potential side-effects of chemotherapy (the list is long and details are gory), and in Tim's case it is likely that the side-effects of treatment will be more severe than the symptoms of his cancer. He will also soon be completely bald, and has been amusing himself trying to see how many people he can guilt into shaving their heads in solidarity. (So far Josh is the only sucker. J, S? A? Any takers??)

Schedule: Chemotherapy will begin next week (Monday, Feb. 13) and will continue over the course of 3-5 months. Administering one round of chemo takes an entire day, and the doctors recommend that patients stay home and rest on the day following chemotherapy- so at a minimum, Tim expects to be away from the office at least 2 days out of every two to three week period. There will also be follow-up appointments and likely some sick days in that time as well.

Chemotherapy is also very devastating to the immune system- the cells that assist in immunity are fast-dividing cells, and the drugs don't know the difference between healthy and abnormal fast-growing, rapidly dividing cells. This means that Tim will be very prone to illness and infections, and has been given strict guidelines about things and people he can't be exposed to. Some of these things and people include: certain foods, public transportation, crowded spaces (e.g. grocery stores, shopping malls), pets, small children, babies (especially those that have recently received immunizations, e.g. [wee J]!), airplane travel, people who have recently traveled by air (e.g. constituents from California), and anyone with a cold or flu. Tim is committed to continuing to work throughout his treatment, and will be utilizing the DC staff laptop when he needs to work from home. On days that he is able to come to the office, please don't sneeze on him :) And WASH YOUR HANDS!!

Finally, the Cancer Center where Tim will be receiving chemotherapy has strict rules about the use of wireless and electronic devices, since they can interfere with the Center's equipment and also be a nuisance to the other patients. This may mean that Tim is totally inaccessible on days he receives chemotherapy. Please keep this in mind when preparing back-up for A, or when dealing with emergencies as they arise.

Tim's state of mind: He's extremely positive! Seriously. He really likes and trusts his doctors, and is eager to begin treatment so he can make a full recovery by summertime. He may have some bad days now and then, so please don't hesitate to drop him an email if you feel like it. They'll help keep his spirits sky high.

Learn more: Here are a few Internet sites that may help you to learn more about this disease.
Leukemia and Lymphoma Society: www.leukemia-lymphoma.org/
Lymphoma Information Network: www.lymphomainfo.net/
Lymphoma Research Foundation: www.lymphoma.org/
Lymphoma.com: www.lymphoma.com/

If you have any further questions about his diagnosis, treatment, etc. feel free to ask. I'll also keep you posted as his treatment progresses.

On a side note-- Tim's 27th birthday was on Thursday, February 2nd! Here's to a happy and healthy year :)

Jenny and Tim

There you have it, and yes, I edited a few names. I don't know the rules for publishing people's names, the ones you see are friends who I think won't mind, but if they do, oh well, I have cancer. How mad can they get.