Dunzo

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

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

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

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

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

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....

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

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

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!

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.