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30% is good right? Right? Fighting cancer isn't sexy. Part 3

Thank you for your continued amazing response on Twitter for the first two Cancer posts.

Links to first two posts:
Part 1

Part 2

Part 3:

I found myself in a comfy reclining chair a lot over the next few weeks. I was banned from sitting on my stitched up behind, so I reclined or laid down. I still was in some pain. I'm not a big fan of pain meds, but they helped. I was itchy as hell from the incisions. Combined with the pain, I had some sleepless nights.

I was visited by visiting nurses for the next several weeks. They helped me change my bandages and empty my drains. Having to empty drains a couple of times a day of liquid goo that came from your insides? Awesome. Good times!! I got good at it & kept a record of how much goo came out every time.

The most important thing the nurses helped me with was my colostomy. I had come to terms with it....or at least I though I did. The hospital gave me clear bags to use. Emptying them was bizarre. And being clear bags? Ok, this was seriously gross. After emptying them, I felt filthy sitting with a used bag attached to me. Because I was so early into my colostomy, I had limited options as to what supplies I had to use. My stoma was going to shrink & before I moved to different products, I was told I had to keep using the standard products.

I searched the Internet & found covers to put over the bag. They arrived & it made me feel human again to have things be "covered up". Over the next several weeks, I was able to try different samples of different products. I settled on some beige disposable bags that fit well & weren't see through. Over the past couple of months, I've gotten good at changing my bags, the wafer & all that fun stuff. It still is a bit freaky.

It's emotional to deal with. A lot of people don't talk about it. I am. I don't want to be ashamed. Fuck it. It's part of who I am now. Another fun perk of colostomies? Gas. You don't pass gas the regular way anymore. It's passed through the stoma on your stomach. Since there's no muscle in the stoma...gas comes out as it pleases. Now there's no smell. The bag and the filter take care of that. But the sound? Ya, sometimes it's loud. If people don't know what you are dealing with, it sounds like you are ripping a big fart in front of them.
 SEXY!!!!! Gas medication & avoiding certain foods can help. But the biggest thing that I have found that helps, is the right attitude. Who cares what people think. I'm alive and happy. You can gently explain your situation if you feel like it or just smile and raise your hands & scream "WOOOOOOOO!!! THAT WAS A GOOD ONE!!!!!".

My body had slowly recovered from the surgery. But I wasn't the same. My body was exhausted. I went back to work part time and was able to take long naps in the afternoon. It felt good to work again. I was ready for the next step.

I had liver cancer on one side of my liver. There was one part of my liver that was cancer free. I was told that the magic liver can regenerate. Before just diving in and cutting out the bad part of my liver, there were more things to be done. If they cut out the cancer affected part of my liver, the healthy part that I had was a bit too small to live with.

So I was scheduled for a liver embolization. They would make an incision into my right side and send "Magic bullets" to stop the blood flow to the cancer affected part of my liver. This would trick the good part of my liver to think that it had been removed. And hopefully it would grow.

It was a two hour surgery/procedure. I remember them asking me if I felt pain during the procedure. I felt a bit in my liver area & told them. But for the most part I was out. I woke up & they told me that everything went well. I stayed one night in the hospital. They wanted to make sure that things were ok & my liver was still functioning. I felt tired & sore, but otherwise ok. I was released the next day & I was so happy to be home.

Over the next few weeks or so, I worked part time & gave a lot of rest to my weary body. My spirits were high. Geno's World was going great. My charity work with the Carroll Center for the Blind was flourishing. Things were decent. I wasn't 100%. I needed a ton of rest. But I was fighting hard!

This week I had a CT scan to see if my liver had grown. Over the last 7 months, I've lost track of the CT scans, MRIs, Pet Scans and tests I've gone through. Dozens. It's no big deal for me anymore. Drink goop? Ok. Lie in a huge machine & stay still. Sure. No problem.

Yesterday I met with my liver surgeon to get the results of my CT scan. The good news was that the healthy part of my liver had indeed grown. The cancer spots had grown a little bit too. I was now now cleared for surgery. I'll have it in a few weeks.

It was scary as always to sign the consent forms. Had the doc list all the possible complications as he has to. I heard everything short of me growing a third leg. Dude!!!!! I'm going to live right? Right? Yes, most likely I will get through the operation fine. The surgeons in Boston are the best. I'm in good hands.

Then he talked about my future. This was tough to hear. I was candidly told that there is only a 30% chance of me being alive in 5 years. I had him repeat it a few times in a few different ways. Numbers didn't change. I realize that cancer is a fierce beast. It comes back in many situations in the affected areas or in new fun areas. I appreciated this doc's honesty. I also have confidence in him.

30%. Fuck that crap. I'm 100%. Yes it's sobering to hear numbers like that. Who wants a death sentence? I'm planning on getting through the operation. I'm planning on still being around in 5 years. And way beyond that. I love life. I love Geno's World. I love The Carroll Center for the Blind. I love my family. I love my friends. I love sexy legs. I have to live for these things and these people! I will win. Thanks for reading my posts. Thanks for the positive vibes. Please stay with me as I fight my battle - Geno

......Oh and I MUST kiss Alyssa Milano on the cheek before I croak. I'll be so pissed if I die before I get to do that.

Link to Part 4

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You are going to remove my what???? - Fighting cancer isn't sexy. Part 2

Thank you for all your kind words and Twitter messages about Part 1 of my cancer story:
Burned Johnson - Living in the bathroom - Fighting cancer isn't sexy. Part 1

This next part is even more embarrassing. But I'm sharing it to raise awareness. Cancer affects so many people in so many different, awful ways. It's important for people to know what happens. It's important for people to understand. It's important for people to get screened. This is my story.

So I made it through the part of my cancer fight. My body was beaten down from the radiation and the chemo. But I was alive. My appetite slowly came back. The food commercials on TV were killing me. I became so hungry. The problem was my system was still messed up. Whatever I ate still made me rush to the bathroom. I know.....sexy. So I drooled over disgusting fast food commercials and ate white rice. Those first dishes of pasta with sauce tasted amazing!!! I felt human again.

The next step was to meet with the rectal surgeon. She is a dazzling young woman who had a ton of confidence. I felt safe with her. My new scans showed that the radiation and the chemo did their job. The tumor had shrunk and the spots on my liver had gotten smaller. Now I had to be cut open. The next part wasn't going to be easy and this is the hardest thing that I have to write about.

The tumor was in a place where the surgeon just couldn't remove it. Because of the location, if she removed it I would have very little control over my bowels. She told me that she would have to basically remove my rectum entirely and that I would have a permanent colostomy. Yay!!!! Ok.....fuck me. The tumor was huge and wrapped around my sphincter muscle. I talked with another surgeon & was told the same thing. Well, I wanted to live. I was determined to do what I had to do.

So the surgery was scheduled. I met with an ostomy nurse who showed me the equipment that I'd be using for the rest of my life. I would have a stoma on my lower stomach. This would be where I would be "doing my business" from. I would have wafers to attach to my stoma and bags to attach to that. My head was spinning. It felt gross and scary. But I had to do this. I had to live.

A plastic surgeon was brought in. I know right????? Because my anus & rectum was getting removed, I was going to have a huge empty space back there inside me. The plastic surgeon told me that he was brought in for cases like this. He told me that he was going to remove tissue from my thigh and flap it over into my rectum. That would place healthy tissue into my gaping hole back there & promote good healing.

So I was surrounded by family as I lay in the hospital getting ready for the operation. My Mom and my two sisters had taken turns being with me and keeping me company at every appointment and treatment. The main reason I was able to make it through all this horror was because of the the three of them. I'm lucky to have them in my life. Strong and caring women are the best!!

I was wheeled into the operating room and I was put under. 8 hours later, I was woken up by a doctor shaking me gently and shouting my name. I made it. I didn't croak. I was given pain medications, but I still felt a ton of pain. I had a scar below my stomach, a huge scar running down my thigh and a bag attached to my brand new stoma poking out of my stomach. I had drains coming out of a few places in my body. They drained goop from my insides into little plastic containers attached to me. I had the area between my ass cheeks sown up with stitches. I was a wreck, but I felt so great! The tumor was gone. I had survived.

I spent 5 days in the hospital. I dealt with pain issues, trying different medications and all sorts of fun stuff. I had nurses and doctors visiting me 24/7. I love being woken up at 2am for someone to take my temperature and blood pressure. YAY!!!! It wasn't pleasant. But the doctors and the nurses were kind. I had my family taking turns keeping me company. I was loved.

Julie Benz and her husband Rich Orosco called me when I was in the hospital. How cool was that? I was so lucky to have friends like her, James Morrison, Michael Chiklis, Jenny Mollen, Nia Vardalos, Kristen Johnston and more who called or texted me along the way. So many of my Twitter and Facebook friends sent me inspiring messages and made me laugh.

Jenny McCarthy was super duper supportive. Jenny has always been a kind supporter of my charity efforts. She has been there for me checking in during my cancer fight. Jenny has even gone the extra mile by sending me nude texts. I KNOW!!!!! How cool is that? Now THAT IS A FRIEND!! I can never thank her enough for her kindness and making me feel special. And God Jenny, please keep sending those texts!!

So I was ready to go home. The pain had gotten better. I walked like an old man around the hospital to get my legs back. It was awkward. I was told by the docs that I was banned from sitting for the next 4 weeks. Holy fuck!!! So I went home in my sister's car with the seat reclined. I was so happy to be going home. I still had so much to deal with. I was scarred up, beaten up, had a new colostomy to deal with and I still had my liver cancer to overcome. I couldn't sit. I had just begun the fight.......

 Thanks for checking in for part 2 of my story. Please check back for Part 3. - Geno

Link to Part 3

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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.

                                         Chemo is fun!!!!!!!!!!!

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.

Geno :)

Link to part 2

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