Thursday, March 21, 2013
Burned Johnson - Living in the bathroom - Fighting cancer isn't sexy. Part 1
I've had so many lovely people asking me over the months about how I was doing. I appreciate every single one of you! Your words and encouragement mean so much to me. As I continue to battle cancer, I want to write about what I've experienced. Cancer is an ugly beast. Fighting it isn't pretty. So I'm going to be very brutally honest. This is a bit embarrassing for me to share, but I feel it has to be done. People have to know how brutal cancer is. Some people have it worse than me. But this is me. Warts and all. No editing. Just me. I hope to help people understand what cancer is & how it can tear a person and their family apart. This is my story.....
I sat in the bath tub crying. My Johnson was in serious pain. I had never experienced radiation burns before. And let me tell you something, it doesn't feel great when you have burns on your Johnson. I was at the end of my daily radiation treatments combined with weekly chemo treatments and continuous daily chemo "blasts" from my portable chemo pack. I was skinny, weak and exhausted. I had experienced nausea and constant diarrhea for weeks. My body was a wreck. It felt great finally letting go of my feelings.
I was surprised when I realized that I hadn't cried since the day I learned that my rectal cancer had affected my liver. I made the mistake of googling liver cancer. First link told me that it was 100% fatal. I learned at that moment never to use Google when you are first diagnosed with cancer. Lots of great information, but not always accurate.
Flash back to months earlier. I had been experiencing rectal bleeding. I was scared. I called my primary care doctor. The nurse there told me to go to the emergency room. I left work, was examined at the hospital and told by the doctors there that I had bleeding hemorrhoids. Drink water and take stool softeners. Ok. I can do that. I followed up with my primary care doctor weeks later. He examined me & told me the same thing. He prescribed lots of natural remedies. Fish oil, probiotics, fiber & all sorts of fun stuff.
It didn't help. I went back to him twice more over a span of months. I asked him if I should see a gastroenterologist and get a colonoscopy. He said I was too young. He told me that it would be a waste of time. Why should I go through it and have them just tell me that I had bleeding hemorrhoids? He was wrong.
I took it upon myself to make an appointment with a gastroenterologist I wasn't getting any better and I was desperate. This doctor gave me a rectal exam as my primary doctor had. 10 seconds into the exam, he told me that I had a mass. A mass? Wait a minute, my doctor just examined me two weeks earlier. He didn't say anything about a mass. This new doctor was very kind, but direct. He told me not to worry. He scheduled me for a colonoscopy for the very next day that he would do himself. He said that he believed that I had cancer. But I was the same person that I was when I woke up earlier that morning. We will get you the best oncologist and surgeons he told me. Don't worry.
Holy crap. Don't worry? I was grateful that I only had to wait until the following day for the colonoscopy. The doc was able to tell me right after the test that I indeed had a large tumor in my rectum. He was pretty sure it was cancer, but the biopsies would tell them for sure. Crap. He referred me to a surgeon that he had worked with before in Boston. I waited for a few days to get the results of the biopsies. I got used to the idea that I had cancer. I got the results. Yup. Cancer.
Over the next week or so, I met with four different doctors and had a barrage of scans. I had so many doctors and nurses put their hands up my ass, it was insane. And yes, it wasn't pleasant. Having a tumor up your ass hurts. Having docs ram their hands up your ass to feel it? OWWWWWW!!!! The scans showed that not only did I have the tumor, but there were "spots" on my liver that were cancer. Oh great. Lovely.
The four doctors that I met with were a liver surgeon, a rectal surgeon, a radiologist specialist and a chemo specialist. My team. I got a ton of information. The moment that always sticks with me is when I asked what would happen if the radiation and the chemo didn't work. A doctor said "That wouldn't be good." And the silence in the room was deafening. Yikes. I could croak? Damn.
So I was scheduled for 5 day a week radiation treatments along with weekly chemo treatments. I got my first tattoos!! Yay me!! Ok, so they are tiny and are just for the radiation treatments, but I felt badass.
The radiation treatments meant I was on a table underneath a massive machine & I had to stay very still in a strange position. And oh ya, I was nude from the waist down. Did I mention that all of the radiology technicians were young and gorgeous? Yup. They carefully moved me gently into position and carefully adjusted me as was required. Ok, this was just a strange situation. Getting treated for cancer, being scared, half naked, sick and surrounded by gorgeous women. My private parts were very confused.
Not only were these women gorgeous, but they were the kindest women I've ever met. Always greeting me with huge smiles and sweet words. As I went through the treatments, I grew sicker by the day. Those smiles and sweet words were appreciated more and more. True angels on earth.
The word Chemotherapy always scared me. You hear the horror stories. Now I had to go through it? Damn. I stared in the mirror at my hair. It drove me crazy to think about my hair falling out. I knew there were a hell of a lot of more important things to worry about.......but I kept staring. So I went to a barber. I had him shave it all off. It felt great!! I was taking control. I went back to work & got polite stares. One sweet women asked me about my hair & I told her that I had cancer. She burst into tears. Fuck. I started to comfort her. And man that felt weird!!! This situation repeated itself several times over the next few months. I would tell someone that I had cancer and they would start crying. I would have to comfort them. All these people were very very kind. But it was just a strange experience that kept repeating itself.
Anyway, I was so proud of myself with my shaved head. I met with the Chemo doctor and asked him about side effects for the Chemo. Nausea, diarrhea, fevers and all sorts of joys. I asked about hair loss. He told me that with the two types of Chemo I was going to receive, that I may experience some thinning hair, but most people don't notice it. So yes, I shaved my head for nothing. But hey, it still felt great! And man, it was so easy getting ready in the morning!!
So I got Chemo the way I had always seen. Sitting in a comfy lounge chair, hooked up to an IV bag with the poison dripping into my body. They gave me steroids and other drugs to combat the nausea. They also gave me pills to pop at home to combat the nausea. I ended up vomiting a few times at home, but much less than I thought I would. The chemo gave me a queasy stomach and affected my eating habits, more on that later.
I also got hooked up to a portable Chemo pump. They described it to me as a Walkman. But it's slightly bigger than that. It was hooked up to my port in my chest. Port? Yes, I had a procedure done in which they put a port in my chest. This gave them easier access to draw blood repeatedly, give me chemo and all sorts of other fun drugs as needed over the months.
The chemo pump makes a soft swooshing noise as it sends me a small dose of chemo. I kind of got used to it, It was bulky and I had to get used to it being strapped to my body. I couldn't get it wet, so that meant leaning over into the shower to wash my hair. It also meant taking baths to wash my body with the chemo pump still hooked up to me, on a chair next to the tub. I tell you what, I missed taking showers!!!
So what side effects did I experience? Nausea, yup. Vomiting, yup. Mouth sores? Yup. Oh Jesus. The mouth sores were awful. Have you ever experienced canker sores? My mouth and throat were one big canker sore. It hurt like hell. I couldn't swallow. My deep voice became high and weird sounding. They adjusted my chemo dose & the sores slowly went away.
Diarrhea? Oh Jesus. It was constant. I couldn't hold anything in my body. Between my stomach feeling like hell, the mouth sores, the closed throat & the diarrhea, I lost a ton of weight. I changed my diet. I followed all the advice. I still spent so much time in the bathroom. It drained me. I would stumble from the bathroom to my bed and collapse. During the night, I would make frequent trips to the bathroom & I lost sleep. I was in rough shape.
Chubby Geno (With pal Chris Gorham) became.....
Skinny Geno (With cute cousins!)
And then.....the radiation burns. Yes I got some burns on my rectal area. That wasn't pleasant. Especially since I was spending so much time in the bathroom. Yes, my ass felt like it was on fire!!!! But that wasn't the worst of it. I started to get burns on my groin. I haven't experienced pain like that it my life. The doctor gave me a cream to cover my private part in and some material to wrap it up in. I was so weak. I was in so much pain. This was such a low point. It was almost funny. Guy sick as a dog with cancer. Can hardly stand. Let's fuck with him and burn the hell out of his johnson!!!! I made it through my final radiation treatments and the burns slowly went away. I sang Hallelujah!!!
So I was done with the radiation treatments and the chemo treatments. The first steps were done. But I had just begun the fight. I still had months of fighting to go. And so much more to do. In my next post, I will talk about my life changing surgery and more cancer fun.
Thanks for reading & please check back for part 2.
Link to part 2
Posted by Geno at Thursday, March 21, 2013