Day 18

Noticeable Side-Effects: Generally None, Some Expanded Balding
Weight: 102.9 kg

Reflection on Treatment:

Somebody chuddered in the treatment room to which I am assigned on Thursday, so I had to wait about an hour before they gave up getting it clean for my appointment and put me in a different room. That was okay except that the headrest in other room is thicker; making the mask extremely tight.

I felt so great Thursday I rescheduled Friday's treatment to the afternoon so I could visit my first-grader's art class that morning. That was really fun, but there wasn't much for me to do other than hand-out dittos and provide escort to the potty.

The bottom line is, I've been feeling really excellent the last couple of days. I felt so good, in fact, that I got out to do some real fishing (not just staring at the lake like last weekend) and managed to catch a couple of 2-foot Northern Pike! This was especially great for me because I'd never managed to catch one before. Great fight; super delicious!

Although I am really feeling better, my hair has finally made the leap from "thinning" to "bald."

I've come to learn that even when caused by a side-effect of medical treatment, this type of balding is still called alopecia areata ("areata" as opposed to "totalis"). I found that interesting because I was familiar with the condition, but was unaware that the name was used regardless of the cause. Again, hair loss has been the side-effect about which I care the least. Go get 'em, hairline! Recede on!

Today is all about catching up on projects:

I managed to make some progress on waraji and may various T-shirt projects the other day.  (Here's one of the T's):

There's still much to do, but waraji is time-consuming, and I'm fresh out of blank T-shirts...

This morning, I've been ripping music to the living room PC (aka "Garbage Computer").

* My "Garbage Computer" is constructed entirely out of parts I found in a (clean) dumpster (plus wires and screws I already had and 1 stick of Ram I got on eBay for $5). It was completely disassembled and the case was bent and smashed, but I don't look "found" parts in the mouth.

PLEASE everyone, DON'T BE LIKE THESE PEOPLE: Among the parts were two hard drives; intact with none of the data erased. Further, the former owners were smart enough to name the spreadsheets and documents very clearly: "Account Passwords," "Banking Info," etc. They are extraordinarily lucky that I picked-up those parts and not someone with malicious intent! I didn't open any files that were not located in the "My Music" folder (because that's all I was looking for), and after salvaging all the music I cared, I formatted the drives to prevent any evil befalling the previous owners.  Seriously people, that was REALLY, REALLY DUMB!

Anyway, a coat of paint, a few screws and Interweb searches for drivers, and presto, a PC for the living room that the whole family can use together for Interweb surfing, video chat, doing homework, etc.:

I finished building it months ago, but there was no need to get it running until school started. Progress feels good!

Now that much (though not all) music has been ripped, I think I'll start putting things together for tomorrow. I'm going to be helping out in my fourth-grader's art class, and his teacher has asked me to show the class some of my art. Harry Potter wands, waraji, T-shirts, etc. are all readily at hand, but I might dig-up some old things as well... maybe something I did in fourth grade? Only if I can find something that would REALLY embarrass my son!

After that, I still have wristwatch gearing to calculate, leather to cut and stitch, jute to weave, circuits to solder, and recorded Star Trek episodes to watch.

Hurray for things to do while sitting in bed!
The Chungerpung

Day 14

Noticeable Side-Effects: Physical Fatigue (not bad enough to say "Exhaustion"), Mental Restlessness, Slight Nausea (probably my own fault)
Weight: 102.9 kg

Reflection on Treatment:

My wife let me sleep-in again (not that she "makes" me wake-up, she just made sure the boys weren't overly loud while preparing for school this morning), so I held-up the show such that I was "just in time" for my appointment.

The Radiation Oncology staff at UM is so quick and efficient that I generally only spend 3 - 5 minutes in the waiting room (the longest wait ever was only 15). That's great except that it leaves me with little time to read. Having left-off at a very exciting part of "Deathly Hallows," I really wanted to read a least to a part where Harry, Ron, and Hermione were not in immediate peril. That's why I think I caused my own "slight nausea" today, because I was reading in the car.

Treatment went on as usual - 2 X-Rays, 7 shots of radiation - and I had good tunes* in the CD player to take my mind off of the horrible smell and flashing lights.
*On an interesting note: Treatment time is exactly the length of the "B" side of the Beatles' "Abbey Road" album ("Sun King" through "Her Majesty").

After treatment, I wanted to talk about my ER trip over the weekend. As I've mentioned previously, I see Dr. Lawrence every Tuesday. He was not in clinic today, but I was able to meet with his resident, Dr. Weinstein, to fill him in on my experience.  The result of that conversation was disconcerting to say the least. Because the ER doctors had found nothing wrong with me, I assumed it was just severe side-effects. Dr. Weinstein explained, however, that if my symptoms had been caused by radiation, there would have been some sort of evidence on the CT film.

That said, he advised me to go about life as usual, but not to drive myself to treatment any more. (Trips to the park to relax or go fishing are fine, but the drive to the hospital is just too long for comfort.) Naturally, I was instructed to keep the Radiation Oncology team informed of any recurrences or changes and that an anti-inflammatory can be prescribed if needed.

As of this moment, I feel as excellent as one could expect. My appetite is good, and I'm really in the mood for fruit. "Nashi," otherwise known as "pear-apples," "Asian pears," etc. are my favorite by far, but I could go for anything juicy. Fresh pineapple would be nice...

So, feeling better, I plan on getting back to my various projects today:
I completed one waraji "shoe" on Saturday, but the weave was too loose on my huge foot. The largest (standard) shoe size in Japan is 28, but I wear a 32 (US size: 13-EEE). With that in mind, I think I need to weave the weft across 6 warps instead of the traditional 4. My re-designed loom:

With any luck, this will work out better.

Hoping to still feel like blogging tomorrow,
The Chungerpung

A Trip to the ER...

About an hour after I finished the last post talking about how good I feel, things suddenly turned ugly...

My head began to ache, and it slowly developed into the worst pain I have ever experienced. The last time I felt pain that severe was in the Nashville airport just weeks before having the seizure that found my tumor.

As if this pain was not discomforting enough in itself, I began to vomit violently around 11:30; waking my wife. I told her I wanted to go to the hospital and she began gathering the kids and some basic provisions as if shifted into some kind of autopilot. By the time I crawled out through the bathroom door, there was already a set of fresh clothes laid-out, sleepy boys and my "tumor notebook" (containing all of my emergency contact and medical information) were gathered in the car, and both the engine and the cab were warm.

On that note, I'd like to thank my wife for all of her support while I've been going through this whole process. She is the model of grace and composure in emergencies, doting and supportive when I'm frightened or worried, the constant provider of comfort and nourishment, and the hard-ass that won't let me get away with pushing myself too hard or undertaking otherwise unhealthy tasks. I would not have survived my original surgery, nor could I handle my current struggle without her. Thank you, Yoko.

Even though it's not the closest hospital (about 1 hour @ the speed limit, ½ hour "flow of traffic"), I decided to go to the ER at the University of Michigan Hospital in case I got asked to stay. We arrived at 1:00 AM. I went to the check-in counter and, after giving my info and situation, was told to go through a door on my right. Expecting a waiting room , I was surprised to find my vitals being taken before I could even sit-down at the triage station. A few questions later, I was given a room and my boys were given warm blankets and an extra chair to try to get some sleep.

I spent about 4 hours total in the ER: Answering questions, getting a CT Scan, drawing blood*, checking various other vitals, and (most of all) waiting for film development and review. That didn't bother me because check-in had been quick and Myth Busters was on TV. Besides, they had a very severe burn victim that I could smell from down the hall and the lady next to me had been admitted for intoxication and was so unruly that they had to call security and the police to tie her to the bed. In short; they were busy.

* (I have aichmophobia - in my case, specific to needles - so 5 minutes of blood-draw always feels like an hour...)

After everything, there was nothing the doctors could find wrong with me. That, of course, was both relieving and disconcerting. In the end, I chalked it up to radiation therapy side-effects, and though I felt a little stupid for it turning out to be nothing, I'm glad I didn't just let it go.

We got home at about 5:00 AM and Yoko and the boys gave me peace enough to let me sleep 'til noon. Yesterday afternoon I felt so much better that I was able to go through with Taco Night (as had been planned since Friday) and even felt good enough to have 1 Corona Light with dinner.

I think I'll end here, and get to my Day 14 post.

Cautiously optimistic,
The Chungerpung

Radiation-Pattern Baldness?

I don't have treatments on weekends, so I'm feeling excellent today.  So excellent in fact that I went fishing for two hours this afternoon.  The yellow perch were biting today.

Now the topic at hand:
I knew I was going to go bald due to radiation therapy, but I wasn't expecting it to happen this way...
* Click images to see them full-size.

My hair loss is coming on slowly and is more "thinning" than "loss" at this point. Frankly, I'd rather it all just fell out because what I've got now just looks like a receding hairline.  During treatment, the machine moves around and sends waves from (7? I think?) different positions.  The area that is balding right now is where I receive the most Greys of radiation each day.

I didn't take any "before" pictures because I actually shaved my head and beard off before treatment started. As you can see, I haven't picked up a razor since... The bald patch on my right cheek is not due to radiation; for some reason, I've never grown anything there.

The closest I have to "before" pictures are these shots taken on my first day of treatment. (These were scanned from print-outs I got at the hospital, so the quality is a bit low.)

In case it's not obvious, the mask keeps my head in position during treatment so I'm not hitting healthy brain more than necessary. The tape with crosses are applied everyday and are used in tandem with lasers mounted on the walls and ceiling to help align my head. Patients who don't use the mask (treating other body parts) often get tattoos for this purpose, but that wasn't necessary in my case.

Speaking of tattoos, I've decided to get one in commemoration of this milestone in my life. (Shut-up mom! The ink is not going to leach into my system and poison me!) As some of you may know, I can be artistic on occasion, so I decided to design the tattoo myself. Here is the rough-draft:

Japanese dragons have healing powers and also protect one against unhappiness and adversity. The two crystals he is holding contain my sons' names. In his left hand my oldest "Itaru," and in his right hand my youngest "Itsuki." This dragon will adorn my left chest such that my boys will be close to my heart. I have already picked an artist with whose work I am very impressed, so I plan on getting this once the car is sold.

My only concern is that a lot of bath houses in Japan have a "No Tattoo" policy (because it's the only way to enforce a "No Yakuza" policy). I think it's pretty obvious that I'm not in the Yakuza, however, so I'm sure exceptions can be made...

So there you have head shots as promised.  Since I'm feeling a lot better lately, I will do my best to continue posting every day (even if I have nothing to say).

Ta ta!
The Chungerpung

Day 13

Noticeable Side-Effects: Physical Exhaustion, Mental Restlessness, Hair-Loss, Dry Scalp, Some Nausea*
* Dr. Lawrence gave me pills for nausea which help, but are not 100%
Meals: I've stopped keeping track. One, I've been too tired to update the blog everyday; and two, I'm not losing weight, so that means I'm eating enough.
Weight: 102.4 kg

Reflection on 2 weeks of Treatment:

On Day 4 (when I suddenly was no longer fit to blog daily), I felt so nauseated after treatment that I had to ask my wife to stop the car a half-dozen times on the way home. Those of you who know me best are familiar with my stomach of tanned leather (that usually takes on 2 gallons of coffee a day) can understand that it takes A LOT to make me sick... I see the doctors every Tuesday now, so I got pills on Day 6 and have not had to "pull-over" since!

Side-effects are finally starting to kick-in, so I'll go into a little detail here:

I got a "Radiation Therapy of the Brain" sheet when I first started treatment which is used to explain the procedure and possible side-effects. There are check boxes next to the various side-effects so I can be prepared for potential issues specific to my case.

The boxes checked are:
SHORT-TERM: Fatigue, Hair Loss (possibly permanent), Nausea and Vomiting, Skin Irritation.
As of today, I have a little of each.
LONG-TERM: Brain Damage, Reduced Intellectual Function, Second Malignancy
* I was told that odds of my having any long-term effects is about 0.5% in my case. Still, this is a pretty gnarly list! In case you haven't gathered, "second malignancy" means "another type of cancer caused by radiation." Dude!  Highly uncool...

As far as exhaustion goes, some days last week (Days 5 - 9) were so bad that I spent most of the afternoon laying in bed. When I wasn't doing as badly, I went to a local park to stare at the lake while "showing" the car I'm trying to sell. This week is much better; I was even able to drive myself to treatment on Days 11 and 12! (I probably could have done it today too, but I like spending the time with my wife and its less worrisome.)

The hair loss doesn't bother me one bit. It will probably be temporary; and if it's not, it's not! I haven't worn more than ¼" of hair since my original surgery, and I don't feel the need to in the future.  I'll post a few photos when I can get someone to take them...

Feeling better so, what to do?

Before treatment began, I wrote a small list of projects I would like to do to keep my brain active and to avoid cabin fever. Until this week, I wasn't up to doing much of anything, but now I'm starting to get to the list.

First item is making a pair of waraji. Waraji are traditional Japanese shoes made from woven rice straw. Rice straw not being readily available (not to mention itchy and uncomfortable), I am using #530 jute. Below is a picture of "proper" waraji, and a shot of my homemade waraji loom:

I usually start several projects at the same time in case I get bored with one or two. This time being no exception, I'm also making a wristwatch, computer mouse, custom-fitting safety goggles, and Harry Potter style wands for my kids.  Here's some wands I did in the past:

The way I make them results in very durable toys and all of these have been thrown around more times than I can count (my youngest can say "Expelliarmus" a lot faster than I can say "Stupify"!).  If anyone is interested, please comment and I will post a tutorial for making these wands (and/or any of the other weird projects I will be posting in the future).

That's enough for now, I suppose. I have so many thoughts and complaints I would like to lodge, but this post is long enough as it is.

Feeling pretty decent and looking forward to two days without treatment,
The Chungerpung

Day 3

Noticeable Side-Effects: Fatigue and Nausea
Meals: No Breakfast - Angus Burger w/Avocado - No Dinner
Snacks: None
Weight: 103.9 kg

Reflection on Today:

I felt lousy all day today and spent most of it sleeping.
I just got up to post this one piece and go back to sleep.
I hope to post Day 3's details and the specs for my car for sale tomorrow.

Day 2

Noticeable Side-Effects: Fatigue (not quite exhaustion)
Meals: 2 packets of "Instant Breakfast" - Mac & Cheese and Salad - Butakakuni, Salad, and Brown Rice
Snacks: Bag of Peach Gummi Rings
Weight: 105.7 kg
WOW! That's + 4.3 kg in one day! I'm sure about 4.2 of it is Butakakuni...  I love that stuff; and my wife is the best cook ever!

Reflection on Today:

Today's treatment was shorter than yesterday's, but it was extremely draining. I was told that feelings of exhaustion and nausea don't usually start until the second week, but I was feeling spent when I got home today. No nausea, and not bed-ridden, but dead tired.

Based on how I felt yesterday afternoon, I had planned to wash my car today (some final clean-up as I'm selling the car). When I got home, I was thinking about putting it off until tomorrow, when I suddenly remembered why people have children!

My boys are 9 and 6, and they already know how to do just about anything I may ask at any given time. (That's why they do not, and never will, get allowance: If they need money, they already know exactly how to earn it!) This time, the only bribery required was a trip to the park after they finished.

Here's my oldest working on the paint...

on the way to the park after a job well done...

Not too shabby, boys!!! Thanks for giving your old man a break!

 My next post will be pictures and details of the car both inside and out, so check back to see how well my helpers did!

 

Day 1

Noticeable Side-Effects: None
Meals: Cereal and Toast - Fajita - Waffles and Yogurt
Snacks: None
Weight: 101.4 kg

Reflection on Today:
All-in-all, treatment was easier than I expected. Everyone was friendly, I didn't get lost in the hospital (for a change), I was on-time (for a change), etc.

All the literature I've read and even the technician this morning said I wouldn't feel anything; but to my surprise, I felt every wave they sent through my head! It felt like a gentle pressure being applied to my scalp at each point where the waves were hitting me. There was no pain.

I was also able to see flashes of light with each wave, but only if my eyes were closed. The flashes were so bright that, until I opened my eyes, I thought there was a strobe light attached to the equipment!

I was tired immediately after treatment, but I don't think the radiation was the cause. I'm sure it was all mental and related to the anticipation I had been feeling versus the anticlimactic treatment itself. I got a second wind when I got home and felt normal for most of the day.

Now, however, I am completely exhausted from over-exerting myself all afternoon (about which I will post tomorrow) and from the mere fact that it's 1:00 in the morning.

That said, I am going to sleep...

***
I didn't mention in my introduction, so I'll put a note in here:

The treatment type is "Intensity-Modulated Radiation Therapy" - using X-Rays shot from a linear accelerator (Google knows the details better than I). My head is bombarded from several directions each treatment. Treatments are conducted once a day (weekdays) for about 6 weeks. Each treatment takes about 20 - 30 minutes.
***

Introduction

Hello Interweb!


I am the Chungerpung. Since this is what I am and not who I am however, you can call me Mike.

I created this blog many moons ago with no idea how (or if) I was going to use it until today.

I began radiation therapy this morning to treat a brain tumor, and have decided to use this space to document my experience and to have something to do on days that I am too tired to get out of bed. That said, I have no intention of restricting posts to the subject of my treatment.

The tumor for which I am being treated was actually removed in January of 2009. Over the past 8 months, however, my little friend has been growing back and radiation looks to be the best way to stop it.

Please check out my brother's blog for details of how the tumor was found, how it was removed, what type it is, etc.  (He did such a good job that it seems pointless to re-type everything.)


http://www.richardanderson.net/TechSavvy/Blog/Entries/2008/12/23_It_Can_Happen_To_You!.html
(Click on "NEXT" to follow the story through Feb 8, 2009.)


So, that's that and off we go!

First Entry

This is a Test Entry.