Round #2

This morning I had my second dose of chemotherapy. It was a much shorter experience this time than it was the first because they gave me less. Instead of two hours of fluids, then roughly an hour of chemo, then another two hours of fluids for a total process of about six hours, this time it was about 2 hours from start to finish.

My reaction to the first round of chemo earlier this month was not good and I still have the mouth sores to prove it. I probably will have them for the remainder of my treatment as well. These mouth sores make it very difficult to stay nourished in a time when I need all the calories I can get. I've lost about 10 lbs. so far even though I've been working very hard at getting food in my system.

A couple of weeks ago when the mouth sores first showed up, my medical oncologist examined me and automatically started to think about changing my chemo or discontinuing it altogether. We chose the former and so that means a different drug in smaller doses, but administered more often. Instead of one large dose to last me three weeks, we are now doing one small dose per week. So today was the first day of this new treatment plan.

Thus far, I'm doing fine, but that's how it started out last time so I'm hesitant to get too excited too early. I'm very tired, and if that is the extent of what I feel then I will be very, very happy!

Radiation is still going ahead as normal. 16 days to go!

You Heard it Here First, Folks

I discovered a little bit of a surprise today. I knew that it was coming and that's why it is only a little surprise. Now, please read carefully the following so that you don't go and do something drastic as a show of solidarity.

Today I started losing some hair. That's right, just fell right out.

But it wasn't from chemo, so don't worry about that.

This is a very important distinction to make. When you lose your hair as a result of chemo, you lose it all and it doesn't stop at the neck--body hair goes, too.

When you lose hair from radiation, which is why mine is falling out, then it only falls out in the area of the skin that has been irradiated. Make sense? So, in my case, I'm receiving radiation on my neck and some various other upper chest areas. Today I noticed that whatever stubble I had grown up to this point in the weekend started to fall out whenever I scratched my neck and even when I didn't. It's not completely fallen out but it's getting there. A bigger surprise was how high up the neck they are treating. I know exactly the size of the treatment area now because bare skin corresponds with it. So now it looks like I have a recent trim on the back of my neck, but only on the left side. Looking at it with a mirror today confirmed my suspicions--it just looks weird. I need to get to the barber soon to make sure that it at least sort of matches up on the other side.

Since tomorrow's Sunday, maybe I'll get around to doing that on Tuesday when the barber shops generally open back up after the weekend. If I can endure the scorn of public life for the next couple of days, I think I'll be okay.

Better Living through Chemistry

An old colleague of mine once jokingly referred to her daily medication as "better living through chemistry."

Last Sunday night, my first side effects from the radiation appeared in a matter of hours. The one side effect that I was hoping to avoid the most--mouth sores.

They completely took me by surprise because I wasn't expecting the side effects to show up until the beginning of the third week. But here I was, 10 days into my treatment, with radiation blisters covering the inside of my mouth. The good news is that they are limited to the left side of my mouth. The bad news is two-fold: 1) they're everywhere and 2) they're huge.

The pain I'm experiencing now is beyond the level of pain I had even before my first surgery. I know that seems impossible, yet it is true just because instead of a singular patch to deal with, it is all over the left side of my mouth.

After my radiation treatment on Monday, I met with my doctors and they, of course, didn't like what they saw. I was immediately written several prescriptions and given some directions on how best to deal with the pain since there is no way to really eliminate it.

What started on Monday quickly became a daily routine. Usually I meet with my doctors for a check-up once a week with that day being Monday. Following the Monday appointment, the resident informed me that he wanted to see me again the next day, Tuesday, following my radiation treatment. On Tuesday, the pain was still overwhelming and so I made plans to be checked on again on Wednesday. Wednesday was better, but still pretty bad. However, they wanted to see how the pain medication was working over the course of a day or two before changing anything. So I got to skip the face-to-face appointment on Thursday but had it again today, Friday.

By the time it was all said and done, I had met with radiation oncologist 3 times, the radiation oncologist's resident 5 times, the medical oncologist 1 time and the nurse another 2-3 times. Once I left the hospital, I usually made my daily trek to the pharmacy down the street from my studio. The only day this week that I did not pick up a new prescription or get a refill was yesterday. Additionally, I had to make two more trips to a different, larger pharmacy that actually had the pain medication that I needed--now that's some strong stuff!

So that was this week. I'm currently doped up pretty heavily. Enough so that it is hard to focus with two eyes open. Let's just say I'm mastering the art of typing with one eye closed. Of course, when I'm not working hard to focus my eyes, I'm usually either beginning to nod off or waking up after already nodding off.

So that was my week in a nutshell. I certainly can't complain because at least we have the pain medicine we need in this country. I can't even begin to imagine what it must be like for those who aren't automatically in the wealthiest 1% of the world's population. I just can't and I'm extremely grateful that I don't have to.

I Am Bubble Boy

I'm four days removed from my first chemotherapy treatment. I'm told that I'm getting a light dose of chemo and it's enough to make me want to puke--literally and figuratively. I didn't know much about chemo before this and I still don't really know a whole lot. But what I do know is that there are a lot of people out there who get much larger doses than I do and it that is just beyond me. For example, I get chemo treatments once every three weeks with each treatment consisting of 2 hours of fluids, then 1 hour of chemo, followed by another two hours of fluids. That's it...I don't have to come in the next day or anything. I just need to make sure that I follow the directions of the doctor. Compare that with a guy I know who as a child went in 4 days a week for treatment and then got two weeks off. Honestly, I just cannot imagine. Of course, there are many different types of chemo out there and each one has its own risks and benefits, but chemo is chemo in my opinion.

The side effects are no joke. Before I even went into the hospital for my chemo, I filled all the anti-nausea prescriptions that they gave me. Ever since Tuesday night, my stomach has been feeling woozy and that is with the anti-nausea medications. I can't imagine what it would be like without the medicine! Aside from nausea, there is this constant feeling of acid reflux that just won't go away. In some ways, this is more uncomfortable than the nausea, believe it or not. The problem is that at night it makes it very hard to sleep and usually I'll get up 4-6 times throughout the night just because I can't sleep. So then I prop up the pillows and usually try my best to sleep upright so that things in my gastrointestinal tract get settled down. Needless to say, however, the changes in sleep habits makes me tired during the day. Not the kind of tiredness that would be characterized by fatigue, but just general sleepiness.

From what the doctors and nurses tell me, it's quite important for me to stay active just to make sure that my body stays functioning correctly. So with that in mind, I'm happy to report that including Tuesday, I've done some kind of exercise every day this week. Usually it's a three-mile run/walk or a one-hour ride on a stationary bike. Usually the hardest part is getting started and once I get going things really get back to normal for me, except that I don't push myself very hard.

The hardest part about all of the chemo is the adjustments in lifestyle. There are a lot of little things that we take for granted that I can't take for granted any longer. For example, because of my reduced ability to fight off infection due to my lower blood cell counts, I am unable to eat anything raw--including fruits and vegetables. The exception to this would be fruits with a heavy peel like a cantaloupe or banana. Basically, everything must be cooked to make sure that all the potential bacteria are killed off. Also, I need to be careful to not cut myself because my platelet count is also low and that makes it hard for blood to clot. I also carry hand sanitizer around with me everywhere I go so that after touching doorknobs and stuff, I can't clean up without having a faucet around. Yup, I'm turning into obsessive-compulsive disorder guy.

So things are progressing along as nicely as I could hope for, I suppose. I'm about 25% of the way through my radiation treatment now, which is surprising. And if I have three total chemo treatments, then I'm 33% done with that, too. It's a marathon, but I've embraced the idea of tunnel vision and I'm taking everything one day at a time because that is all that one can do.

Radiation Therapy - Days 1-3

Wednesday was the first day of my radiation "therapy". (I think that the word therapy is applied loosely in this context, but I digress.) I showed up a little late because I had a few things at work that were pressing and every time I had been to the hospital before I ended up waiting for a significant amount of time. Turns out that the radiation department runs almost like clockwork so they were really moving fast to get me in and out of there.

When I walked back into the room, I saw my nemesis--the mask--right away. I cringed. After getting positioned on the table, they locked down the mask and started to get everything set up. Right away I knew that this was not going to work. The problem is that I don't like to be completely and forcibly immobilized with a mask pressing over my face. It squishes my nose down and makes it hard to breathe. Why not breathe through my mouth? Well, I've got what they call a bite block that is in my mouth to push my tongue down so that is in the same position every time I'm shot with radiation. So that makes it hard to breathe out of my mouth as well.

The mask is made of a mesh-like material that is rock hard. They fit it to your face during the radiation simulation that I had a couple weeks prior. The mask starts out flexible and is stretched over your face until it hardens. Then they take a bunch of measurements, write all over your face and neck, and then take a bunch of pictures. Then the doctor looks everything over, gives them additional instructions, signs off on it, and then they do some more tinkering. The whole process takes about 45 minutes and is about the most unpleasant experience you can imagine. The only problem is that when they first stretched the mask over me, they forgot to insert the bite block in my mouth, so the mask partially hardened in a size too small for me. (The bite block holds your mouth open slightly, thus pushing your chin down.) They quickly pulled the mask off and put the bite block in and then replaced the mask before it had completely hardened. This left, as I mentioned before, the mask too small so that when I have the bite block in, my chin is pulling the mask downward against my forehead and nose, making it harder to breathe.

Anyway, fast-forwarding back to the first official day of treatment...they slip this mask over me and immediately I begin to panic. Like most people, I begin to breathe a lot faster when I panic and this is exactly what happened. Of course I can't talk, since I've got this bite block in my mouth (imagine yourself in the dentist's office when he asks you a question and expects you to answer when you've got your mouth full of about 4 appliances and his fingers--that's kind of how it is). Since I can't talk, I just start squirming to get their attention--they hate it when you squirm because that means they've got to readjust things. Anyway, the technicians pulled the mask off and asked me what was wrong. At this point, they gave me an inch and I fully intended to take a mile. "I can't breathe with that thing on," I said. "It just pushes down on my nose and is really painful. Basically, I can't forget that I have this thing on and that is the one thing I need to be able to do to make this thing successful." So they ended up cutting part of the mask around the nose out which made things MUCH better. They also allowed me to listen to my iPod so that at least I could have some music to make me feel like I was on a sandy beach in the Caribbean even though I was the farthest place from it. (Funny note here...when you lie down on this table, they have silly seascape portraits posted to the ceiling. Apparently, these things are supposed to help keep the patient calm but they forgot that we've got the stupid mask on and can't see much of anything...brilliant...but it was a good effort.)

So the first day of treatment was about 30 minutes long because they had to double check the settings of everything and make sure they weren't shooting radiation into my hip instead of into my neck. All in all, I think I did pretty well--certainly better than during the simulation. The next two days went even better--the second day was a little tough at one point but the third was a breeze. One of the techs said, "You're getting used to it!" Almost in a congratulatory tone. I responded that I didn't think I would ever get used to it--and as I think about it now, I don't think I ever want to get used to it. Never in my life do I want to look back at this experience and think, "Hey, that was normal."

I was under the impression that my chemotherapy would also begin the same day but they decided to start it up next Tuesday. In preparation for that, they gave me three prescriptions for anti-nausea medicine. The most common side effect from chemotherapy is severe nausea and vomiting. However, some people never suffer through it. The bottom line is that they don't know how your body will react.

If you are now like I was last week, then you don't really know how chemotherapy works. Well, first they hook you up to an IV and pump you full of fluids, then give you the chemo, and then give you more fluids. It's a six-hour-long procedure--yuck. The good news is that all the fluids are supposed to help reduce the number of side effects.

All of this isn't as bad as I make it sound. I tried to explain it with a little humor but maybe it sounded a little cynical/sarcastic. Oh well. What you should know is that I feel good so far. The bad side effects are yet to come and I'll know a LOT more this time next week about how my body will respond to the drugs. I've been exercising regularly and trying to build up my energy level while gaining weight as well. I've been more or less successful but there is still work to be done. The trick is focusing on the big picture. It helps to remember that there are a lot of people leading perfectly normal lives out there who have been through this already. Look at Lance Armstrong, for example...get cancer, beat cancer, fully recover, and then win a few Tours. Not bad for a dude who had cancer throughout his body.

D-Day

Tomorrow is the big day--actually, later this morning since it is so late. I had planned to be in bed a couple of hours ago but you know how that goes. Time just gets away sometimes no matter how much you try to plan ahead.

I don't think a person ever feels ready for this kind of thing. I'm not really scared, but I am apprehensive. Hundreds of thousands of people have gone through this before and come out alright. But sometimes numbers don't mean much. You can't wrap yourself up in a warm set of numbers like you can a blanket, unless you've won the lottery, that is!

Fun things that happen tomorrow...hmmm...let's see...

For starters, I get to start taking my Salagen. It's a drug that helps kick your salivary glands into overdrive. The hope is that this helps to preserve the salivary glands during radiation. Sometimes it helps a lot and sometimes not at all. I've already been told by my radiation oncologist that I'm almost guaranteed of losing 25% of my salivary glands. The most important function of saliva is protecting the teeth so my dental oncologist has already got me on a heavy dose of flouride to harden the enamel on my teeth as much as possible.

Tomorrow also marks the last day I'll be able to shave without an electric razor. After about three weeks, they say I won't even have to worry about shaving. I hate shaving, but honestly, I don't like the thought of not having the option!

Chemotherapy also starts tomorrow, and that is the wildcard. I don't know how I will react to it, but I've been told it should not be bad since it is a low dose. We'll see. It probably would have helped if I had been sleeping by now, but whatever.

I've been extremely fortunate so far when it comes to food. The folks at my work have taken very good care of me over the last several days. I have so much prepared food that just needs microwaving that my freezer can't take anymore! I've even got a few things in the fridge that I'll have to eat soon but it won't be a problem...trust me. This of course helps with the goal of gaining more weight. I forgot to weigh myself today but since I walk around feeling full all the time I'd say there must be some kind of improvement!

So that about does it. Hopefully I'll be well enough in the coming days to continue work which would mean no posts to the blog for at least a couple days. If I'm sick at home, then maybe I'll be able to put together a few nuggets of wisdom for you all.

Thanks for reading!