Check Up #1

I returned to the hospital today for the first time in a week. Going to the hospital on a weekly basis sounds like a lot, but after going on a daily basis for seven weeks, it just doesn't feel like all that much really.

Today's check-up was with with the medical oncologist. He was the one who said I should skip my final chemo treatment last week. He asked me how I was feeling and did his thing before saying that I was pretty much right on track and where I should be. That was encouraging.

My chief complaint was about the mouth sores. I wanted them gone last week! Apparently, however, the tissue that has been irradiated is incapable of producing new cells until 1-2 weeks after radiation. This would have been helpful information to have before they turned me loose. That way I wouldn't have woken up each day with the hope that maybe, just maybe my mouth sores were on the way out--only to be disappointed time and time again. The bright side of it is that I'm at the one-week mark and now the improvements really should come. This whole thing has been a lesson in patience beyond what I wanted to learn.

I also got the answer to a question that I didn't really want to ask because I was afraid what the answer might be. The question was: When can I expect to get my sense of taste back? And the answer that I got was something along the lines of, "Well, we fried things pretty good in there. You probably won't get your taste back for at least a month." And then he continued, "But your ability to taste should come back." Now, I knew all along that a permanent loss of taste was possible, I just never like to be reminded of it. So let's assume for now that most of my ability to taste (even if it is only one side of my tongue) will come back. But this month thing...ugh, it's killin' me!

For those of you out there who have never lost your sense of taste, don't. For your own good, don't. It's like watching a movie in black and white. Or watching Charlie Chaplin. Something's missing that you would have never missed if it had never been there from the beginning. But if you go 27 years with it and then it's gone...well, it just sucks...that's the bottom line.

One of the things that has been helping me get through all these treatments and that I have been looking forward to for a while now is an upcoming trip to California. Now, most of you know that I lived in Santa Barbara for six years, and you also know how much I love it there. (Sometimes, I still question why I ever left.) One of the things that makes Santa Barbara so great is its food--from fast food In-n-Out to the hole-in-the-wall El Sitio (best Mexican food outside of Mexico), the food there is absolutely remarkable. It should not be a surprise, then, that I was planning on gorging myself with all kinds of Double-Doubles from In-n-Out and chorizo tortas from El Sitio every day that I was there...not to mention the breakfast burritos and cinnamon rolls at the stand by the ocean! (My dry mouth is already watering.) Anyway, now I'm forced to come to grips with the fact that I will not be able to taste the very food that I have been looking forward to for so long now and it makes me very sad. I'm not kidding...this is very disappointing and has put a cloud over my day. My only hope is that somewhere in my mouth are a few healthy taste buds that successfully fought the radiation well enough to stay intact.

A New Season

Here's a pretty cool observation--the first day of my post-radiation life was also the first day of Fall this year. So, not only was it a new season on the calendar, it was also a new season in my life. When I thought about that on Thursday, I just thought to myself, "You can't plan stuff like that." Once again, it's reassuring to know that someone bigger than me has a hand in all of this.

So other than that, there's really not a whole lot of new information to report. My tongue still hurts to about the same degree as when I wrote about it on Wednesday. I thought that maybe yesterday it was getting a little better but then this morning I felt like it took a step backwards and that was disappointing. I'm so eager to be able to drink and eat like a normal person again and sometimes it feels like my time will never come. Of course I know that it will, but after several weeks of having a restricted diet following my tongue surgery in February, and then again following my neck surgery in June, and of course during my treatment most recently, it begins to wear you down. And, let's not forget that this all comes on the heels of my limited ability to eat prior to having the first tumor removed--a period of several months.

So I keep praying for a miracle because I'm tired of the pain. Hopefully I'll have a better report in the days to come.

Victory

This dreadful battle is finally complete. And by virtue of me simply being able to walk away from it, physically and mentally, I can declare victory despite the fact that I am banged up a little. I know the bigger fight is still in progress--I would be foolish to think otherwise--but this represents a huge step in the right direction. A huge step in gaining and keeping the upper hand in my fight against cancer.

I wish that I had some nuggets of wisdom to share with you, but I haven't yet had a chance to reflect on the entire experience. There was some mental preparation that was required at the beginning to make it through. Of course, there were also ongoing mental approaches, or postures, or whatever you want to call them, that I had to maintain throughout the treatment. Once I am able to begin letting go of those, or at least changing how they are manifest in my daily life, then I think I'll be better able to understand my experience.

All I know for now is that I couldn't have, and didn't, do this alone. I was reminded of this on my way out of the hospital this morning. I had in my hand the cursed mask that I had been forced to wear for the previous seven weeks during treatment. (I had asked the technicians if I could keep it and they had said yes. There are a lot of life lessons in that mask and it will serve as a good reminder to me later on in good times and when I think life is hard.) As I stopped at the front desk to validate my parking ticket, the lady behind the desk looked up at me and with a huge smile on her face that almost matched the size of the smile on my face said, "Last day of treatment, huh? Congratulations!" Through my battle-scarred mouth I could simply mumble, "Thanks."

And with that, I turned and walked out the door, trophy in hand.

One...day...left...

Today, my penultimate day of therapy, is over. In less than 24 hours I will be done tearing down my body and focused wholly on healing and rebuilding it. Of course, it will be a long, slow process but at least, from what I can tell, I am either at the bottom or a few days removed from it.

The reason I can say this is because my last chemotherapy treatment was last Tuesday! How is this possible? Well, originally, my medical oncologist said that I would get three treatments of Cisplatin lasting a course of nine weeks--one dose per three weeks. After my first round of Cisplatin, my body reacted violently, in combination with the radiation, and I broke out with a lot of very painful mouth sores. When the medical oncologist examined my mouth, he didn't like what he saw and decided to go with another, similar drug that supposedly doesn't have as brutal of side effects as Cisplatin. I did three rounds of the new chemo, called Carboplatin. The doses were smaller and received on a weekly basis so that three weeks of Carboplatin would have been the same as one dose of Cisplatin.

Fastforward to this morning, after having three doses of Carboplatin, my mouth sores again came back just as bad as the first time. To make a long story short, the doctor again decided that my body had had enough and decided this morning to forego the final dose and discontinue the chemotherapy.

Of course, the first question that comes to mind is, "Won't this lessen the effectiveness of the attack on the cancer?" Well, the quick answer is yes, but when you consider that the chemotherapy was added to my treatment plan as almost an afterthought, then it isn't nearly as alarming. The other thing to consider is that it was originally meant to boost the effectiveness of the radiation, and since I only have one day of radiation left it doesn't make a whole lot of sense to continue the treatment. In the end, I'd just be putting my body, perhaps unnecessarily, through a whole lot more pain (I already am unable to eat and can barely drink anything, including water) for minimal benefit. And since the doctor thought it was a good idea to discontinue, I figured that I'd probably be okay.

So, tomorrow is it. After I hop off that table one last time following radiation I won't be going back (knock on wood). I'm hoping that this is just the beginning of many more good reports to come.

65 Hours and Counting

Recently, I've been marking the progress of my treatment by football games. For example, when the NFL was still playing its preseason (which I don't care for), I knew that I still had a long way to go. During the first college football weekend, Oregon State (yes, the ferocious Beavers) were playing Portland State. Now this game was not televised, but I knew that the third game of the season, against ranked Louisville, was going to be aired on ESPN. So yesterday, when I woke up, I knew that I was getting close to the end of radiation because the Beavers were going to be playing the Cardinals. Now, for any of you who follow football, then you know that the end result was not pretty, but I didn't really care. I mean, it would have been nice to see the Beavers win, but it was just fun to see them play a nationally-televised game--for a small market team like the Beavs, that just doesn't happen too often. So anyway, I am now in the last weekend of football while receiving radiation and chemotherapy. It's been a L-O-N-G road, but I'm almost there.

Even when the treatment is over, however, I'll still have my share of waiting before things are back to normal. I'm hoping that the mouth sores--and therefore most of the pain--will be gone in the matter of a couple of weeks. My doctor has emphasized how some side effects will subside quickly and others will take up to 6 months or a year before they are completely gone. I can say right now, however, that if the mouth sores go away and my taste comes back, I'll be a very happy camper!

On one hand, it's hard to believe that I am as close to the end as I am. On the other, I feel like this should have been finished a long time ago. In either case, it's a good thing that I am as close to being finished as I am because I honestly don't know if I could take another full week of this. The side effects have been manageable up to this point and even my doctor says that now I am getting to the part of the treatment where they really can't do anything more for me in terms of pain management. Anyway, I've got less than 72 hours until the worst of this is over...then, I'm on the downward slope.

A Step Closer

Today was another double whammy at the hospital with both radiation and chemotherapy scheduled. I had a pleasant surprise during radiation treatment that I think I briefly mentioned in my last entry. At the time I didn't know what kind of change would be made in the treatment, but now I do. Up until today, I have been receiving five zaps of radiation per treatment session. Beginning today, that number is reduced to three per session. The best news of it all is that it cuts the time that I am actually in the chamber by more than half!

Chemotherapy also went pretty well and my nurse did a great job of getting the IV set up. Last week it took 3 tries--this week, only once, and it was relatively painless. Unfortunately, she is not scheduled to work next Tuesday when I get my last treatment.

So a big hurdle was jumped today and now I have 6 radiation treatments remaining as well as one more round of chemotherapy...the countdown continues.

Well, there's really not much new to report except that I am a week closer to being done.

My last day of radiation is Wednesday, September 21, which means that I have eight treatments left. When I was at the hospital for my treatment on Friday, they took another round of films (basically x-rays) to make sure that things are still going well. To be honest, I have no idea what they are looking for when they take these pictures--I know it is not for the presence of cancer because that is not visible. Anyway, they took another round of films because apparently my treatment will be altered slightly--it's nothing changed from the original plan, but this is the first time I've heard about it. I don't know if it will make the treatments shorter, longer, unchanged, different angle, or what--all I know is that it will be different for the last four days of the treatment. So that means that Monday through Thursday of this week should be same old, same old. And then the new setup on Friday through Wednesday.

My last day of chemotherapy is Tuesday, September 20--that is assuming that the doctors elect to not change or discontinue the chemotherapy which is still a possibility, albeit a remote one. Chemo is still only once a week for me and that day is obviously Tuesday. For some reason, they seem to have problems finding a good vein for my IV. Last week they stuck me four times trying to find a good vein that was comfortable for me. They always like to go after these two veins that I have near my wrists that are easy to identify--the only problem is that it really hurts to have a needle in these particular places. So every week I go through the same thing: they eye one of those two good veins, I tell them that it won't work and that they need to go higher, they start looking higher and can't find much, they ask how far down they can go, and before I know it I'm in a negotiation over where they get to stick me with a needle. It can be pretty frustrating because every morning before I can get my chemo, I need to have blood drawn down in the lab. The technicians in the lab are the best at sticking me, believe it or not, but for reasons that I can only imagine are bureaucratic, they cannot leave the needle in my arm from my blood work in the morning to the time that I get my chemo.

The side effects from the radiation and chemotherapy are steadily getting worse. This time, however, it seems to be getting worse on the outside. As crazy as it sounds, I feel lucky about that because the mouth pain is just too much after a while. My skin looks really sunburned now with one patch affected much more than the rest--so much so that it will bleed from time to time. Also, I continue to lose more facial hair which creates a weird pattern of growth if I don't shave for a few days. I'm pretty sure that I haven't caught everyone who has done a doubletake. The dry mouth is also getting worse and it wakes me up almost on the hour every night--I still drink a lot of water and use a special mouth wash and take my salivary gland prescription, but the effects are still pretty obvious. A somewhat new development is almost a total loss of taste which makes eating even harder. I made a fun discovery yesterday, however. I woke up from another one of my long naps with an urge to get some Chicken McNuggets. Luckily, there is a McDonald's not too far away and I went and got a 10-piece order and they went down great--it was an easy 500 calories! So I'm thinking that today I'll go and get a 20-piece order. It's even more important for me to get as much food down as possible considering that I've lost 16 lbs so far. Can you believe that??? 16 lbs...it's not like I had a lot of extra weight to begin with! I've never really liked being thin and now it just makes me hate it even more. The last noteworthy side effect is fatigue. The amount of time I've slept the last few weeks has got to set some kind of record. It really has been quite amazing. I'll usually get 12 hours of sleep a night--of course, the sleep is interrupted--and then I'll take a 2-3 hour nap, sometimes two of them, during the day. The rest of the time I eat and make sure that I'm taking my medicine. It really is like a full-time job.

So that's my update.

8 Days.

Fatigue

I don't ever remember being so tired. Yesterday is when it really hit me--I could never really wake up and even after radiation I was still feeling like I should be sleeping. I left work early because I just couldn't keep my eyes open anymore. I had been given some food from some folks at work and when I got home, I put it in my kitchen and fell asleep before I even got the food in my fridge! The crazy thing was that I slept for almost 3 hours and probably still could have slept another 3 hours! I put the food in the fridge when I finally woke up. Hit another wall at around 10 p.m. again and slept pretty much the whole way through the night--unbelievable!

Today was more of the same, but without as much sleeping. When I got home from radiation treatment, I had a few things to take care of but then again I was down for the count. After taking care of some work stuff and getting a few prescriptions refilled, then I was again catching a nap.

Some good news is that my mouth sores seem to be getting a little better. Enough so that I can eat much easier than I could before. Being able to eat should help with the fatigue that I am experiencing, however, I can't be sure, either. It certainly can't hurt the situation!