The Cancer Journey – Live Life!

First off I really want to thank the people who’ve had cancer before me. Cancer is not fun! The treatment is always improving Those who went before me suffered a lot, so that the treatment could get better and I didn’t have to suffer so much. It’s not pleasant and I hope they can learn something from my experience so that those who follow will have it a little better and maybe someday we’ll get this thing beaten, but for now it’s a real pain in the tush (and can be literally!) So for those who suffered before me the ones who made it and the ones who didn’t,. Thank you. Thank you for what you went through and what you fought through to help others be able to have a chance.

The day was bright and sunny, I was taking a walk around the office parking lot when I got the call. The test came back,, I had colon cancer.

Let me step back a little bit from that. I was feeling good. I was swimming about a mile, three to four days a week. Walking my dogs a couple of miles a day, going out on the weekends, having fun dancing.

Life was good I hadn’t been to a doctor in a long time because, I usually don’t get sick. I thought you know, let me give it a shot. I’ll just get a physical and check up and see how I’m doing. The doctor’s office checked me out looks good. everything’s good but you know you’re at that age you probably should have a colonoscopy. Oh, no problem I haven’t had one before, can’t be to bad. I usually don’t do well with anesthesia I wake up early. So I’m sitting there got my colonoscopy going. I’m sleeping soundly then wake up. I’m looking at the little TV screen, interesting. I lay quietly watching the screen as this little tube goes up my colon looking at all sorts of stuff. A couple little polyps the doc mentions to the the nurse. no big deal and then she says you know I don’t know about this one. I go hey what’s up doc! She was a little surprised I was awake she asked me if I wanted some more anesthesia to knock me out. I’m like, no this is interesting. at the moment it wasn’t hurting. Yeah I don’t know about this one, it looks so funny we’ll send it off for testing. But it it might be OK.

The test came back. That one had cancer. They couldn’t tell if they’d gone to the colon walls or not, but the protocol says cut the colon. They scheduled me to go in talk to the surgeon. Talking to the surgeon I said “you know it was just a little bit of cancer and they don’t know if I went to the colon walls. I don’t know if I wanna get chopped up yet. Do you think we could just watch it for a bit?” The surgeon said “that’s a something a reasonable person could think, it’s kind of an iffy spot but if you want to wait, we’ll just do tests to see if anything shows up.” Cool I’m not getting sliced and diced! I go to my first test and everything’s looking good. Get my second test so three months later, colons good but hey “You know you got a couple bad lymph nodes up above the lungs. we’re going have to do a biopsy.” Well that’s going to be OK,, I come back in and they were able to cut out one of the two lymph nodes for biopsy. Hey, I have cancer, Hodgkins, great. It didn’t look like it was related to the colon because they were too far away and not the right type, so it’s a different cancer. Ohh wonderful. So I start six months of chemo, great fun. I go back in for some tests. Yep looks like there’s no Hodgkins, everything’s good. Probably time for another colonoscopy. OK, well I got a bunch of tests going so I figured, I went through a colonoscopy once without anesthesia I can do it again. “it’s not that bad yeah”, bad idea. Ohh man the gas pains hurt! I’m watching it go up, I’m in pain,” why did I do this, what a dummy”. Doc gets to where she’d put the little tattoo at where the cancer was, and she’s looking at it. Probably forgot I was awake once again, and goes ohh shit. I go that doesn’t sound good. She was “ I’m sorry I’m sorry, but yeah that doesn’t look good. We’ll send it off for biopsy, but it’s not looking good. I wait, get the biopsy, Yep colon cancer. Let’s slice and dice. Scheduled surgery, go in for the colon surgery, they cut off about 9 inches of it and then I get an ostomy bag. God that was fun! Fortunately, my colon cancer was far enough away from the rectum that it was going to be a temporary bag. I heal, everything’s going good. They go in reconnect the colon and patch me up, no more bag! I’m feeling pretty good. I run another round of tests everything is good. Three months later, another set of tests, except, everything’s not clean. “You’ve got cancer on the liver”. Oh my God I do all my research. Liver cancer does not look good at all, it’s bad as a matter of fact. In my state of mind I had six months to live. (for the record, liver cancer and colon cancer metastasized to the liver are VERY different. With very different survival rates. But in my chembrain state I didn’t realize that.) Yhey schedule surgery for the liver. That’s a process! and then they cut out half the liver. At the moment I’m clean. I am supposed to go in for another test, we’ll see what that one looks like.

Let me go a little deeper into how all this affects you because we hear things like “neuropathy”, “chembrain”, “fatigue”. They didn’t really mean anything to me before all this. Now I understand. Fatigue – being tired, you can recharge and get going. Fatigue isn’t tired. With fatigue I have all the power and energy I needed, I just couldn’t use it. If you have worked on cars, you know what it’s like with a really clogged gas filter. I got full tank of gas but nothing’s going to the body. I could lift up a bunch of weights I just couldn’t do anything with them because I was tired. I was exhausted. I had no energy. I felt pathetic. Fatigue starts slow and just gets worse. I felt it some when they started the Hodgkin’s chemo, then it slowly built up. I thought it wasn’t too bad, I could I could go swimming. I tried once. You know I’d been swimming a mile just a few months before, I got maybe 10 feet turned around said yeah Nope can’t do this. I don’t have the energy in case I go farther out, to get back. I kept walking. Just went slower and not as far. With the hodgkins I didn’t have that much neuropathy.

I felt a little sluggish brain but the chembrain hadn’t really set in. So I felt I was doing pretty good. Then they started me on the colon cancer treatment. Colon cancer was chemo and radiation Yep fatigue is there. Fortunately the radiation was not too bad of a deal and because of the new ways of doing it I didn’t burn. I went in once a day for 15 minutes, get my dose of radiation blasted at it and would go home. I was taking these chemo pills twice a day. Every time I took one, my mind’s going ”ohh man this is poison pill” It sucks. I’m getting a little neuropathy in my toes, still have fatigue. I could get up and work for maybe an hour on the computer and go lay down for two. I didn’t notice, but the chembrain was setting in. In my mind I’m thinking, fatigues pretty rough but it’s OK. I can deal with it. They got the cancer tumors shrunk down so they were able to do the colon cut. Yeah there’s a few things that came with side effects. Things like your digestion and stuff. I had to watch what I ate, I was losing weight. I went from 180 lbs to 140. One time I’m trying to go dump. Yeah that was a hard one ripped me up. I now have a lot of sympathy for people with ripped up rectums, because every time I went to the bathroom for the next couple months I’d almost cry. I was able to heal once the ostomy bag went in. You gotta be careful with those bags. you roll over the wrong way in bed, it’s a mess. You don’t get it closed right, it’s a mess. You don’t watch it right, it’s a mess. Somebody bumps you wrong, it’s a mess. I learned to give hugs on the left side, please don’t hit that bag!

I learned some interesting things about the body, through it all that was fascinating. Our bodies are amazing. The way they work. When they reversed the ostomy I had to relearn to go all over again. It’s kind of weird, but as the doctor puts] it ”I lost some of the storage and some of the packing facilities so the body has to relearn how to function” I am working on that still. I didn’t realize how bad the Chembrain was I wasn’t thinking clearly. As I mentioned, it took a while to understand that colon cancer metastasized to liver is different than liver cancer. I had more than six months to live and actually have a pretty good shot of living for a while. After the colon/liver surgery but the chembrain can’t think that way. I was going somewhere in my truck. I didn’t check the water and overheated. On chembrain I focused on an auto parts store at my destination. “it’s hot, it’s out of water huh well there’s a part store at the town I’m going to I’ll let it cool off keep driving” I passed by a couple of gas stations, “I’m gonna make it”. Chembrain tunnel vision. Unable to think of options and think rationally, think clearly. Chembrains can be weird. One day I was sitting there, following a car. On the back window it had a memorial of somebody , born this year and died that year. It took me 6 hours to do the math, figure out how old the person was. I just couldn’t concentrate and put things together right. Chembrains are weird I’d forget things, forget my daughters name, forget friends names, like I’m working through stuff trying to remember simple things, Eventually I’d remember, much later.

So back to the crazy ways of our body and medical. For the liver surgery it’s an interesting process. They map out all your veins in the area around your tumor. You spend a couple hours on a table while they put dye in and map your veins. On the next visit they put these little nuclear bombs in your veins ( that’s why they map it,). It’s a all the timing thing but the whole concept is they want the nuclear pellets to surround the tumor and start killing off the tumor. How strong they are depends on when they put them in. When why they mapped the veins so were able to figure where to put the nukes so they go around your tumor. Some may go other places. They can get in the lungs and some other place and cause issues. All this just adds to your fatigue and this little radiation blasting away your body right in your liver affects your body, and did I mention causes more fatigue? Side note, it’s kind of funny ,when the surgeon was talking about the liver surgery she says “do you drink much?” Well I drink a little bit but not much and mostly socially. she asks “would it be OK if you stop drinking ?” Yeah, why wouldn’t I? live or drink, I’ll live! “Would it be OK. if you never drink again again?” live or drink I choose life! It was just kinda weird that some people won’t. Anyhow the third part of the pre prep for liver surgery is after they get those nuclear bombs in and settled and everything’s going well, your next visit they start blocking the blood flow to the side of the liver they’re going to cut. It’s painful, you gotta be awake because they keep scanning so they go in they block a vein, then let you sit for a while they so they can check to make sure the blood flow stopped. and they block another and on and on. So you’re laying flat and quiet on a scan table as they go, a little bit of work, a little bit of work, a little bit of work, for hours. Not exactly the funnest thing, when that’s done you again go home for a couple weeks. They will make sure that side of the liver id dying off, and the other side is growing. ( the liver is the only internal organ that will regrow. My liver (the half they left alive) grew up to about 53% in size so they could they schedule the surgery. The surgery was the easiest part, Slice you open, cut it out, wrap you back up and send you home. I was like ohh I can handle this no biggie, But thankfully my brother’s like no we’re coming over and he came over to help me out. I was so fatigued that most of the time I would be lucky to get up out of bed. It’s was the bed or the lounge chair, assometimes I just couildn’t lay down.

Thank goodness for people, trust your family, trust your friends that’s what they’re there for. I’ve always been somebody who’s there for other people and I’ve always been somebody who wont to ask people to come help me. I don’t know why, through this hopefully I learned. As one friend put it” you like helping people it makes you feel good to help people, you need to let us help you so we can feel good for helping”. At the moment I’m doing OK we’ll see they happens. With cancer you never know if, or when it might come back. But through it all I learned a few things. I joked around when we were young and “immortal” hey we’re all dying, but with cancer, yeah we are. We only have so much time, I don’t care how much money you have, you can’t buy another day.

Live each day as meaningful because, it is.