The Long Road... #2014reboot

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Thursday, September 16, 2010

#263: Intermezzo

Here's a word I learned while watching Cash Cab yesterday. Yes, I am that boring. An intermezzo can be a piece of music between the major movements of a symphony. It can also be a sorbet or wine intended to cleanse the palate between courses of a meal. That's what I'm doing now. Cleansing my palate.

Monday's meeting with the doctor was like the meal I'd been waiting for. It was delicious. I loved celebrating with friends on the phone, on Facebook, and on my blog. But something was missing. I thought that a clear CT scan would mean that it was all over. I expected to wake up the next day and start a new life. Turns out that it doesn't work that way. The threat of cancer is over, but the recovery has barely begun.

Since getting the good news, I've been exhausted. Wiped out. In his book, Lance Armstrong said he spent this period playing golf and eating Mexican food. I won't be playing any golf, but I'm not ready to jump back up on the bike just yet, either. Mrs P keeps telling me that it's going to take time.

This offends my Protestant work ethic. My mind tells me I should be up and around. Doing things. Getting stuff done. My body does not agree. In spite of the Ambien, sleep takes forever to come. When it does, I sleep for hours and hours. When I wake up, I feel like I'm in a fog. Yesterday, I tried on four pairs of shoes. I was sweating like crazy. It took me an hour to recover. 

So what about this intermezzo? What is it going to sound like? It's going to be quiet. I'm afraid it's going to be bland, like a sorbet between the fish and the meat courses. And it's going to take far too long. 

The first thing I did when I got home after the appointment on Monday was to start a "to do" list. They are mostly little tasks. Chores, really. They are important things, but they aren't really goals. Yes, I want to do the things that will get our lives back to normal. Do the dishes. Finish the taxes. Get the car fixed. Fold the laundry. But I want to do some bigger things, too. Direct a play. Run a 5K. Play Shakespeare. Find a smaller house. Get a job acting.

None of these things will be easy, and I can't do any of them on my own. Each will take time, planning, lots of work, and plenty of luck.  But first, I'll need to pick one. And I will. Just as soon as I can get up out of this chair.

Peace,

Pennsy

Tuesday, September 14, 2010

#262: Did I Really Have Cancer?

In an exam room not much different from the one where the doc told me there was something wrong, my oncologist showed me a report saying that there were no signs of cancer on my CT scan. And the blood clot is almost gone. It's a preliminary test, but they found no signs of cancer in me. I don't know if I'm in shock or what, but I've been numb ever since.

What the hell just happened? Did I really have cancer? Did they actually cut me open and take out my jugular vein? Did they really pull all my teeth and install a hose in my stomach and shoot me with radiation and fill my veins with poison?

Did all those people really call and visit and write to say they loved me and were praying for me? Did they actually have yard sales and rummage sales and fund raisers to help when our insurance was canceled? 

Was it real? Eighteen hours of sleep, puking my brains out, swallowing pain pills like tic-tacs? Did I really spend the last six months (minus two days) thinking I might be dead by Christmas? Did I dream all that?

Yesterday at 3:00 I had cancer. Then, by 4:00 I didn't. Or at least none that they could see. What the hell just happened?

What do I do now? SSI says I can go on disability. Should I take it? Should I look for a job? Go on a trip? Write one of those "I survived cancer" books? Do I volunteer somewhere? Do I spend the rest of my life looking over my shoulder for fear of a relapse? Or do I treat this like a second chance? An opportunity to get things right?

Something just took half a year of what's left of my life. I feel like it ought to mean something. Like it ought to have some significance. I'm just not sure things like this mean anything. They are just events, stuff that happens. If they have meaning, it is in the way they change us. I wonder how cancer has changed me?

Now that I'm not afraid of dying any more, will I be as patient and forgiving? Will I be as grateful? Will my priorities change? I just don't know.

Right now I don't know or feel much of anything. I guess I'm still in limbo, just a different neighborhood than the one I was in yesterday. In the seventies we had a very corny saying about today being the first day of the rest of your life. Something really big was true about my life yesterday, and now it isn't true any more. And I'm not sure what's more important: the things that changed, or the ones that will stay the same.

What's changed? I don't feel like I could die any minute. I don't feel like there is an alien living in my body. I don't feel like an invalid. I'm not fighting cancer any more. At least not my own.

What hasn't changed? I love my wife and my mom. People care for me. I want to act. 

I'm sure these lists will get longer over time, but it probably isn't too productive to dwell on them. Many of my questions are going to have to answer themselves, and many will have to just remain unanswered.

Maybe the biggest thing cancer has taught me is that I am more loved than I ever thought possible. More than I could ever ask or imagine. If that's the only answer I ever get, I'd have to say it was worth it.

Peace,

Pennsy 

Saturday, September 11, 2010

#261: Wait For It...

It's a surprisingly good day. I'm starting to resign myself to the idea of waiting. Mum and I joked yesterday about how silly we'll all feel on Monday when the doc tells us there's nothing wrong. That would be a good problem to have to deal with. 

Cancer has radically changed the way I worry about things. I've always preached that stuff about "Consider the lilies" and whatnot. You know, "God grant me the serenity to accept the things I can not change." if you want to stay sane with cancer, you have to do more than just preach that stuff. The stakes are so high, and the worst cases so terrible that letting yourself get too far ahead would drive you crazy. Don't let me kid you, I worry. I'm not some kind of mental master. I still get scared of what might happen. But I'm a lot happier when I give my mind something else to do. Having that rehearsal this week was really a blessing. Even if I did feel "Rode hard and put up wet" when it was over. I've been living on the buzz for two days.

Today we have some guests coming to visit. Our niece and nephew-in-law are coming over before the big UK vs. Western Ky University football game tonight. It will be great to have some youthful energy in the house for a while. All us geezers are getting on one another's nerves a little. It's always good to have to put on your company manners. Even if it is only for an hour or so.

Tomorrow, I'd like to go to church. I haven't been in a while, and I feel a little like a phony only showing up when I need something. I haven't been struck by lightening yet, so I don't guess God minds too much. I have friends there, including other cancer fighters, and it does my heart good to get a little unconditional love, whatever my own motivation might be.

Besides, I guess there are worse reasons to go to church than loving one another. Come to think of it, I'm not sure there's a better one.

Peace,

Pennsy 

Thursday, September 9, 2010

#260: Square One

Yesterday's adventures wore me out. The scan was easy. The rehearsal was exhausting. It was only a read-through, but it was a lot more than I'm used to. Never thought I could feel so tired just from talking.

There was nothing to the CT scan. A nice lady put an IV in my arm. Hit the vein the first time. Not even a bruise. Believe me, with all the needle sticks I've had this year, I've really come to appreciate that sort of thing. The scan was quick. The tech helped me onto the table, hooked up the contrast fluid to my IV, and closed the door. One quick trip through and back and it was all over. I'll get the results Monday. In the meantime, I'll be trying to keep busy and distracted. I'm tired of fretting over things I can't do anything about. 

Last night's rehearsal was hard. Physically hard. I was so excited to get started that I showed up an hour earlier than everybody else. Since we were meeting at the director's home, we sat and chatted for a while. I made friends with her dog. Once the rest of the company arrived, we had a lovely meal together. Our hostess had taken the trouble to fix a home made mushroom soup for me, and was gracious enough to eat it with me while she served the rest of her guests a more substantial feast. It reminded me of Atticus Finch eating peas with his knife. It was very kind of her to do that. The eggplant parmesan sure looked good.

Don't get me wrong about how hard the rehearsal was. It isn't like we were dancing and running around. We sat in comfortable chairs and read out loud. By the time we were finished, I wasn't sure what kind of sounds were going to come out of my mouth. The character uses lots of dialects. All mine sound like Dracula. When I tried to sing along with the music, I croaked. I'd like to say I wasn't bad for a first time back, but I was pretty bad. The drive home felt like a cross-country cattle drive. I climbed into bed and died for about fourteen hours. And for all that, I feel like a million bucks. It's great to be back doing what I love. 

Still, this comeback thing is going to take longer than I thought. I can't wait to see how it turns out.

Peace,

Pennsy

Wednesday, September 8, 2010

#259: What the Old Timers Know

Today is my CT scan day. My brother-in-law is also having his umpteenth chemo treatment. I am amazed by his ability to take the punishment. I guess we all do what we have to do. He and his sweet wife B are off to Bowling Green for treatment this morning. God bless them both.

The head and neck cancer support group was much less scary yesterday. Several people commented on how much better I looked. It was a refreshing perspective. These folks haven't seen me for a month. When you are living day to day, it is easy to lose track of long term changes. They reminded me how really badly I was doing just four weeks ago. I was making progress without even realizing it.

Last month I was scared by the stories of people whose sense of taste took two or three years to get back to normal. Some people never get all the way back. Yesterday those same stories gave me hope. You can recognize the long time survivors because they are so positive and encouraging. Those of us closer to treatment are more worried, but the folks who actually make it for years are. The ones who keep hoping for the best. I talked a little about my anxiety, and hey just kept telling me, "You're gonna be fine." And I will be fine. Whatever the outcome of today's scan, I'll be fine. I'll still have great doctors and people who love me. I'll still have God, no matter how frustratingly silent God seems to be. And I'll still have this blog to share my story with people who need to hear it.

It's gonna be fine.

Peace,

Pennsy

Tuesday, September 7, 2010

#258: Places to Go, People to See

There are events on the calendar for a change. This afternoon is the head and neck cancer support group. Tomorrow is my CT scan and then I have a rehearsal tomorrow night. Singing without teeth should be an adventure.

I'm apprehensive about the support group. The last meeting freaked me out a little. Lots of stories meant to be encouraging that made me feel worse. Sort of reminded me of the friend who said that AA meetings always made her want to drink. It's the one time that being around other people with cancer really scared me. People three and four years past treatment who still couldn't taste or swallow like they used to. People with hearing aids and dramatically scarring surgeries. It made me realize how much worse off I could have been, but also showed me that I'll probably be living with the consequences of this disease for a long time. When I got home that night I was as sick as I've ever been. I actually threw up in the yard, before I even got into the house. I'm hoping that tonight's meeting is a little less dramatic.

Tomorrow's scan, I've talked plenty about. It will just be a little ride through the big donut. The exciting part of that adventure comes on Monday when they tell me what they see.

The rehearsal is going to be a small one. Just me, the director, and one other actor going over some music (I think.) They are nice people and they know me, so I'm not worried about being judged or anything like that. Nevertheless, I'm very self conscious about my speech. I expect to be pretty frustrated by the sounds my mouth won't let me make yet. I've always been especially vain about my voice, so I guess this is going to be a real character builder. Still, I can't wait for the go ahead on the new teeth.

It's another beautiful day in the Bluegrass. The girls and I are getting ready to go spend some time in it. It will be nice to have some things to accomplish before I go back to worrying.

Peace,
Pennsy 

Monday, September 6, 2010

#257: Rather Be Flying

Seven days more and the wait will be over. On Wednesday I have the first CT scan since treatment ended. Next Monday I get the results. They will tell me if they see any cancer still in there. The waiting is driving me crazy.

I've been doing a lot of very esoteric reading. Reading about Mormonism and Masons and Theosophy and Hinduism. It's as if I'm searching for meaning somewhere else. My own life is so stuck in limbo right now. I have always stubbornly sought my own answers, but right now I would love for someone to tell me what it all means.

Last night I dreamed I could astrally project my consciousness. I left my body and flew around the world like a ghost or a magician. Nothing about my physical being mattered, not cancer, not being tired. I wasn't afraid of being sick or dying. I just flew, free and strong. I was pretty disappointed when I woke up. Turns out that the laws of space and time still apply to me.

I've been having these crazy paranoid thoughts. What if, after all this, I beat cancer and I'm not a better person for it? What if I'm the same selfish, frightened person I was back in April? Back when I was really sick I was sure that I was becoming someone different. Someone whose priorities had changed. But what if that was just a delusion to help me get through all that misery? Would that mean my cancer had no purpose, no meaning? Should it?

Part of me wants to hope that it will all be over soon. I'll sit in the examining room and the doctors will say that I'm all better, I can get the PEG tube out of my belly, get dentures for my mouth, start lifting and running again. Stop being afraid. Start being a new man. I want to hope for the best, but I'm afraid of how I'll react if I don't hear all that.

What if they tell me it's back or it's moved or it's worse? What if I need more chemo or have to do radiation again? I was diagnosed on April 16. Almost five months. It feels like such a long time, but I don't guess it is. Not really. Lots of people battle cancer for years. Will I? Can I?

See why I'd rather sleep? Life is much better when you can fly. I don't know what's coming, but I do know something is going to change in seven days. I hope it's me.

Peace,

Pennsy

Thursday, September 2, 2010

#256: No Giving Up

OK, first some good news. It's been a day and a half since I last used the feeding tube. I'm finally able to stand the taste of my protein shakes. I may lose some weight, but at least I'll be ready when it comes time to pull it out. The rules are that I have to be off the tube for two weeks, have to maintain my weight, and have to be healthy enough that further treatment is not likely. The last part is out of my hands, but I can at least put the PEG tube behind me. I feel a lot less like an infant when I don't have to ask to be fed, which is a bonus.

It's a little bit of an exaggeration to say I can stand the taste of these shakes. The truth is that most everything still tastes terrible. I've just decided that it doesn't matter what stuff tastes like. I have to learn to eat again. All I can do is hope my taste is back to normal before I try my first slice of pizza.

Now the girls are going to take me for a ride. I have given them every reason to write me off over the past few days, but neither of them has the courtesy to give up on me. Good to have people around who don't get sick of trying.

Peace,

Pennsy   

Wednesday, September 1, 2010

##255: The Waiting is the Hardest Part

What was once a daily joy has become a weekly chore. I miss blogging, but then I've been missing just about everything lately.

While I was warned about how difficult radiation and treatment would be, I have to admit I was totally unprepared for this ordeal of waiting to find out if they worked. It's still a week till the CT scan and almost two until the appointment when we get the results. Meanwhile every itch and tingle convinces me that the cancer is back. A few weeks ago I couldn't conceive of that possibility. Now I'm obsessed with it. 

Everything irritates me. Conversation works my nerves. Silence depresses me. Watching TV feels like a waste of time, so I put on the headphones and watch YouTube. Walking makes me happy, so I stay in bed till noon, when it's too hot to go out. Nothing I'm doing makes sense.

Part of what I'm going through is depression, but mostly I'm scared shitless. I told Mum yesterday that I think I'm sleeping just to avoid being awake.

We've had some rough news this week. My sister's brother-in-law passed away suddenly. A friend was diagnosed with cancer. People I love and care about have much bigger problems than mine. My God. Is that the problem? Am I upset because I'm not the center of attention any more? How hideous is that?

See why I'm not blogging much? I bore myself with all this complaining. I certainly wouldn't want to read about it online. I'll try to find something more interesting to write about tomorrow.

Peace,

Pennsy  
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