“It’s three thirty in the frickin’ morning. What are you doing awake?”
Well, the short answer, would be “typing softly so as not to wake up sleeping beauty in the next room.” That’s one good thing about the new house – the office is down the hall and around a corner from the master bedroom. That should help mask my late night typing jaunts.
The long answer? Well, that’s somewhat. Um… longer.
You know how sometimes people get reflective on their lives when they have cancer? And how others get reflective when they take part in someone else’s life event, like a wedding or a funeral? And how others still get in the mood when they have a birthday? I hit the trifecta this weekend, baby! A wedding on Saturday, my birthday on Sunday and, well, you know about the cancer thing already.
I guess this would be a good point to post a warning. I don’t really know where this post is going, but it probably won’t be to a shiny happy place. If you’re newly diagnosed with Hodgkin’s, you might want to stop reading here and go read some of my happier posts. Mom, this might not be one you want to print out for Nanny to read. Or maybe it will be – we’ll see where I go with this. At the very least, it will be long and rambling and kill a lot of trees. Be patient, everybody.
Strangely enough, the thing that convinced me to risk waking Barb was an early morning snack. I’ve been awake this whole time and crossed that border between tired and hungry. I came upstairs to do some of my usual random websurfing, checking up on the Hodgkin’s board, some blogs and my Flickr account (new photos added a couple of days ago that I neglected to mention). As I sat here numbly clicking through the world, I realized I had a giant Mr. Goodbar in the left hand drawer of my desk.
Interesting that all of my candy resides on the sinister side of my desk.
One thing about the Whitney Street house – while it’s pretty cold in the winter, it gets hot quickly in the summer. We came home from the birthday celebrating to find the second floor quite stuffy. We didn’t risk the third floor. I opened the windows in the bedroom, so hopefully it had cooled off in there before Barb turned in.
The office, however, has not. Not much anyway. You see, the two windows here don’t have screens. Well, one definitely doesn’t and I’m almost certain the other doesn’t either. Something for the new owners to concern themselves with, whoever those new owners wind up being.
None of this was going through my head as I opened the left hand drawer of my desk. I think what was going through my head was something along the lines of “Food. Eat. Now. Good.” I took out the Mr. Goodbar and proceeded to break it into its component rectangles as I always do. At least, I tried to. The bar wasn’t gooey, but it wasn’t breakable. Just a really pliable in-between state.
So I’m sitting at my desk, eating my Play-Doh textured Goodbar and something poignant and relevant comes to mind. Some grandiose statement on life, death, melted chocolate and Doing Things. Something to make all of you say “Holy CRAP! I’ve got to read this guy more often! He’s DEEP!”
Sadly, that poignant, grandiose statement is lost to the ether, eaten away by ADD, early morning and chocolate satiation. I promise it was really good too. Both the idea and the chocolate.
Even though I haven’t the slightest notion what my early notion was, it got my typing and I figure I should keep going. This is the part that makes me think I’m going to get into trouble. Not trouble exactly. Maybe more along the lines of uncomfortable. Different? Maybe. Depressed? Possibly. Boring? God, I hope not. Rambling? What, are you new here?
Whatever my thought may have been as I was trying to lick the melted chocolate off my fingers, it had something to do in no small way with This Thing I’m Dealing With. You know: the cancer.
Where does my head want me to begin? Let’s start with an update that I forgot to post, then you’ll be able to follow along with the bouncing ball that is my brain. Here’s what I posted over on the Hodgkin’s forum (partially edited so it doesn’t seem weird and stupid over here) :
I do have some good news this morning to add on to all the drama.
1) Barb has done some wrangling and made some phone calls and has managed to move our closing date on the new house up to June 9th. We’re both overanxious to get into the new place and really tired of being in the old place. She told me last night that she’s gotten to the point where having to come home to this place just wears her out and crushes her spirit. Then she realized that she feels like this coming home from work, but I’m having to spend 24 hours a day here. We might have to pay two mortgages for a little while, but we’ll figure something out to make it work.
2) I forgot to mention yesterday (I dunno why, something must have been on my mind), but my bloodwork is finally back to normal. Still a tiny bit lower than it should be, but no more mask for me! WOO HOO!
3) Last night Barb took me out to Outback for a “No more MOPP” celebration dinner. Incidentally, if you’re on MOPP a word of advice: Even though you can eat cheese again 14 days later, this is apparently something you should ease back into, as my intestines will attest. Anyway, as we were getting ready to leave, my phone rang and it was SuperCoop. It always amazes me when doctors call and talk to me themselves.
He said he had talked to the chest radiologist and the nuclear medicine radiologist and they both agree that it could be pretty much anything that’s lighting up on the PET. So he’s going to be talking to a “very very good” thoracic surgeon about getting that biopsy done. He thinks it’ll probably happen next week and said what will be done to me is called the Chamberlain Procedure (bottom of the page). Apparently I’m going to be a really good basketball player when it’s all said and done. When the surgeon calls, I’m going to see if he can do a Gretzky Procedure on me instead.
So there’s where things are standing now. We’re overjoyed that we’ll be moving into the house soon and super happy that we’re gonna be cutting part of this sucker out to see what’s going on. That’s all I would need is to go through the whole SCT process and still have the same thing light up just because it’s born from the nether regions of Mars. Now I just sit and wait for the thoracic surgeon to call.
That was Thursday morning. I haven’t heard anything from the thoracic surgeon yet, so I’m going to call my SCT coordinator and see who I need to bug about the biopsy. So all this means that there’s a possibility that I’m in remission, and might have been for some time. Except for one thing.
The Itch is back.
It started three days ago, on my back for the first time. Sunday morning, the old familiar itching of the hands came back. Mom, Dad – close your eyes for this next line.
Yes, my number one symptom of the Hodge seems to be reasserting itself. It’s not as bad or as maddening as it was for a year and a half before diagnosis, but it didn’t start out that maddening then either. Am I angry? Not really. Sad? Maybe a little maudlin. More than anything, I’m just tired.
I’m tired of these early morning nights, too itchy to sleep, to tired to think.
I’m tired of putting my body through the wringer. I’ve been on one form of chemotherapy or another for a full year, for a disease that usually takes six months of chemo.
I’m tired of being tired. I can’t help anyone anymore and can barely help myself on the bad days. On the good days, I can sit down and type.
I’m tired of being emotional. Barb will walk into the room to find me bawling my eyes out and all she sees on the TV is a frickin’ long distance commercial. I was quite proud of myself for holding it together all through the wedding Saturday, though there were quite a few close calls. Interestingly enough, as much as I cry about external things, I can’t seem to bring the tears up for my own plight. In fact, thinking about myself is often a surefire way to make the tears dry up. How messed up is that? My theory is that some part of me knows that the other things I’m crying for are short term with a definite ending. If I start crying for myself, where will I stop?
I’m tired of waiting. My whole life has been on hold for the past year, particularly the last six months or so. While things are indeed happening, the majority of my life is in “sit and wait” mode.
I’m tired of scratching. I’ve already got scars from the first round of itching, all of the places where I clawed at my skin until I bled. I’m ready to heal now, not open up more wounds.
I’m tired of my brain not working. Sure, I’ve been doing Sudoku like nobody’s business, and I’m not a complete gibbering idiot just yet, but there are still frustrating short circuits I’ve been having to deal with. For example, I was reading a description of our house which mentioned the linoleum that had been installed “on the cellar floor.” I couldn’t read that correctly until the fourth or fifth time. On all of the initial tries, the line said “cellar roof,” which made no sense to me and caused me to keep rereading the sentence to myself. And this wasn’t just a simple misreading mistake. On those first three or four tries, the paper actually had the word “roof” typed on it, according to my brain. On that last attempt, the word finally changed into what was actually there. That was even scary than the now-usual random mistyping, where I’ll say, replace all of my “f”s with “p”s or something equally bizarre.
I guess most of all, I’m tired of this ever-looming and slowly growing specter of death hanging above me. Sure, Hodgkin’s is the most curable cancer out there. Sure, it’s the “easy” cancer to have. But guess what – the cure rate’s not at one hundred percent. And a good portion of the percentage of people who kick this thing beat it down with ABVD alone. With each different form of chemo I’m taking in and each new procedure being performed, I’m moving more and more into the “special case” category. The one time it pays to be average, I have to go and be different.
I’m often asked how I do it. How I get through the day, each day, every day. How I cope with this thing hanging over my head and the constant, crushing letdowns I’ve had through the course of this stupid disease. Well, there are a few things that have helped me up to this point.
One of the most important things is my ADD. This is one of the very few times it’s helped me out in life. If you’re distracted by shiny objects whenever you start to think Bad Cancer Thoughts, you don’t have a long enough string of Bad Cancer Thoughts to break through your clueless hide. Sure, I’m constantly reminded and remind myself of the fact I have cancer several times an hour. But there’s so much other stuff in the world to cram into my head that it’s easy to put the cancer thing on the back burner often, especially since it won’t stay back there. I mean, sure this cancer thing’s important, but look – tinsel!
That’s the easy, happy answer I most readily give out to people. And while it’s an easy, happy answer, that doesn’t mean it’s untrue. At most, it’s a lie of omission. Forgetfulness is a large part of my Cancer Sanity Program, but that’s not the whole story. It’s just the easiest story.
The next part of the story would be that indefinable trait of human nature known as me. While I can have my dark, brooding depressed moments, it’s not in me to blather on about them to other people. He says as he blathers on to other people. I guess what I’m trying to say is that most often when I’m around other people, I don’t tend to be exceedingly serious. Quiet, certainly, but it’s my nature to be quietly funny. I like to put the people around me at ease, and it’s easier to do that by making fun of this stupid creature than it is to whine about my life’s injustice. There are enough people doing that in the world already – we don’t need one more voice.
As difficult as things may get for me, I always keep in mind that there are so many who have it worse than I do. No matter how I want to look at it, I can always think of people in worse situations. Yeah, I have cancer, but it’s not brain cancer. Or colon cancer. I could easily be in much, much worse shape than I am right now. I could be in a third world country with no available resources for cancer treatment. I could be in this first world country with no insurance. I could have no support. I could be alone. I could be dead.
Aside from that, I really get sick of one-downsmanship. I mean, here I sit with the trump card for almost any one-downsmanship faceoff, and I refuse to play it. In public, at least. In my head, I’m thinking “Oh you poor thing, there with your sore throat you’ve been whining about for the past three hours. I’m glad I only have CANCER to deal with!” Not that I’ve become a less caring person, but come on.
Another large part of my story is support. A big thing that keeps me going are the supportive emails I get from all of you out there, whether family, longtime friends, newfound friends or random folks who stumbled across the site. Each word of encouragement helps me lift my head and prepare to fight the next battle. When I see folks in person and they give their support, I get lifted a little higher yet. You people play a big part in keeping me going, and I do thank you for that.
The last thing is a world premiere. I’m pretty sure I gave Barb a sneak preview awhile back, but as Barb is basically a part of me, this is the first time I consider it to be telling someone else. The biggest secret that keeps me going was a revelation I had awhile back. I don’t remember when it was exactly, but Barb probably knows. She’s the part of me that remembers things.
One day, I was thinking about this whole Cancer Experience. I was thinking about fighting, I was thinking about winning and I was thinking about losing. Mostly, I was thinking about giving up. Let me rephrase that. I wasn’t thinking about actually doing the deed and giving up, more like I was thinking about what “giving up” required. What thing in your body or your mind would have to change to make you quit. I’ve heard of people with other cancers who have relapsed, often multiple times, and have decided to just let the cancer take them. The treatment was worse than the illness, so they’d rather enjoy things while they could, rather than go through the agony of more chemo or more radiation.
I was reading someone’s blog or maybe just a story about someone with some other kind of cancer. One of the bad ones. They had recently made this decision themselves and were going through the process of dying. Something in their story or in their words finally made a connection fuse in my brain.
You see, up until that point, I was fighting this thing under a major misconception. Not an actively thought out one, mind you. Just working under a notion I hadn’t thought about or thought all the way through. Up until I finished that story, I thought of the death option as a light switch. If I got to the point where I decided to give up and let the cancer take me, it would be over. As if the mere act of giving up and deciding to die would flick this life/death switch to “death” and it would be all over and done with.
I should interject at this point that I’m not a stupid person. I’m merely of an age where I’ve never really thought about death from illness. People in my little world died from car crashes and hurricanes and freak accidents and heart attacks – things that take you rather quickly. Therefore, the people dying from cancer and old age and disease all went the same way in my mind. Sure, I know these aren’t quick deaths, but I never really sat down and pondered what one of these would be like. Have you, little Mister/Miss Healthypants?
Once I thought about it, I was stunned at just how idiotic my subconscious notions were. Giving up on this thing isn’t an easy out. Dying from cancer is a horrifying process. To die from cancer is to lose pieces of yourself little by little each and every day until there’s nothing left. Not only does it steal you away from your loved ones, it steals you away from yourself.
Above all else, this has become my primary driving factor. Not necessarily a will to live, or an urge to not die, but a definitive goal to specifically not die from cancer. I have no fears of being shot or stabbed or killed in a horrendous car wreck. Drowning and burning are still in the top three of ways I don’t want to go, however. But more than anything else, I’ve made a vow to myself that I’m not letting cancer take me. I am not going to give in to disease. I am not going to waste away. I am not going to lose myself. No matter how dark the night, how early the morning or how dismal the test results, there is one thing I can promise to both you and myself with no doubts in my mind or heart.
I will not give up.