Colon Cancer, Chemo, Treatments and Side Effects

When talking to a friend, who had chemo treatments, he humorously remarked, “Kip, you’re  goin’ to love chemo, it’s such a frickin’ trip!”

CHEMOTHERAPY – The poison that cures
Lets face hard core reality, Chemo is not a pleasurable experience. I wouldn’t wish it on anybody — and it comes in many difference types. Its multi-faceted side effects is one of the major reasons why people avoid it like the plague and seek alternative  methods such as herbs, spices, marijuana and other voodoo remedies.  It is a deadly poison that kills the good red and white blood cells, but it also kills the bad cells that cancer so silently provides.

Yes, we have all heard the horrid stories about this cancer killing treatment. The Internet is riddled with the good, the bad and ugly of chemo.  It is depressing, emotional, and painful because the side effects can throw your mind and body into a flaming tail spin or at times, all you want to do is put a gun to your head.

But in the long run, chemo requires discipline to avoid breaking any of the rules of engagement.

But one thing for sure, everybody experiences a different relationship with chemo — no two patients are alike and by the end, you become an expert on Chemo.  At least that’s what my chemo nurse, Michael said. Michael was a blessing. He had over 35 years in dealing with cancer and chemo  patients. But most important, he had part of  large intestine removed, so he was very informative in the the who, what and why things were done.  Michael helped ease the tension of the unknown.  He was also a certified First Responder (EMS) and did Search and Rescue. Bottom line: This man knew his shit!

My first real orientation about chemo was two weeks before I started. My doctor gave me about 14 printed-out pages, with the first page being a Letter of Consent, which I had to sign.

One of the first things I noticed was the big boxed, WARNING on each type of chemo.

Skimming the pages, I noticed that my print-outs covered everything related to treatment procedures: the emergency hot line numbers, how to respond if something goes wrong, and the side effects patients may experience.  All the print-outs were written in a complicated medical lingo, requiring a bit of internet research before I could fully comprehend them.

Did I have second eerie thoughts ON taking Chemo? That was a no-brainer and a gigantic challenge!

It didn’t take a nuclear scientist to add 2 + 2 that my chemo was going to be extra brutal, because for me, it narrowed down to infusing 3-types of chemo while sitting in a chair. My first treatment took almost six hours (the first several times chemo is infused slowly, this is done to make sure the patient can handle it). Then after the main infusion, the best part came, I was hooked up to a pump with a six-foot tube that plugged into my port, which for the next 48 hours chemo would be pumped into to me. Oh, boy!

It is well-known, that when one starts to feel somewhat human, then you know it’s about time for your next treatment. LOL!

My treatment was for six months or 12 treatments. Every other week (twice a month) I was taking:

1. Oxaliplatin, a medication that’s sole purpose was treat advanced colon cancer in the large intestine, and to prevent the spreading of it of people who had tumor(s) removed, which I did.
2. Fluorouracil – a medication to treat colon or rectal cancer and to prevent the spread.
3. Leucovorin – is used to prevent the harmful effects of methotrexate (used to treat certain types of cancer of the breast, skin, head and neck, or lung), and to treat anemia (low level of red blood cells) and colorectal cancer.

I was also given a prescription for Pepcid, a pill that helps prevent nausea and stomach ulcers caused by the chemo. Before each infusion, four drugs were administered. One was Benadryl, which helps reduce the beginning side effects as this poison is invading your body. Sorry, I never could remember the other three, so I nicknamed them after the auto store of Prep Boys, Manny, Moe and Jack. I always got a chuckle from my doctor and nurses when I referred, the “Prep Boys” just before I got shot up.

I was also told to take Vitamin C and the sunshine Vitamin D. Both vitamins helped strengthen our bones, something that chemo has a reputation of destroying.

THE GOOD
God blessed me by sparing me, several side effects that I was fortunate enough not to experience: Hair lost, nauseous and puking. But, as I mentioned earlier, “everyone is different.”  On my second to last treatment, chemo caused all the hair on my legs to vanish. Judy and Toni claimed it was sexy. My remark, “Okay. Whatever!”  I figured God gave me a break on these Three Big Side Effects and “warned” of what He could have done when it came to hair lost on my head. Believe me, all my friends and family were totally surprised that I kept my blonde locks.

THE BAD
My general and most cherish (Rule#3) ongoing side effects were, extreme fatigue, non motivation, cold sensitive, numbness in my feet and fingers, weakness in my fingers (could not even open a box of cereal), sleepiness, dizzy spells (dehydration and potassium shortage), uncontrollable trembling of the hands, and the ongoing, never-ending and literally the pain in the ass, diarrhea. Now add the removal of the large intestine, and I had a double whammy of bathroom visits.  One time I took a coin and put it in the bathroom soap dish each time Mother Nature called. It started at 3 pm and by 6 am I had 25 coins in the soap dish. Sleep? LOL, what’s that?

THE UGLY – Screw the Vegan Bull Shit!
Because of my operation and chemo, eating was an ongoing challenge.  It essentially got narrowed down to carbs and protein. I could not eat anything fibrous, so this ruled out fruits, nuts and vegetables, which caused a triple whammy.  I ate solid food like, chicken, potatoes (mashed were the best), pasta (without tomato sauce), oatmeal, eggs, bananas (potassium) sour dough bread and ground beef were my main food sources. Any organic vitamins were a major threat because of their dietary/fiber ingredients. But whatever worked the first time doesn’t mean it was a sure thing. If I ate boiled chicken and mashed potatoes one day, the same meal five days later could send me camping out in the bathroom for 12 hours. Frustration and real (no political) butthurt were just more symptoms that I had to laugh at (Rule #3).

Here is my most cherished (Rule #3) remembrances under the influence of the notorious Chemo.

1st Treatment – My sister, Cathy, took me to my first treatment at 8 a.m.

Scared? No! By this time I was mentally ready for it. After blood test and pressure were taken along with being weighed, I was pointed to Room #1 and to sit in Chair #1. I waited, waited and waited until the chemo nurse walked in carrying a tray of three pints of chemo and assorted drugs in infusion hypos. Then she asked me to open my shirt and she disinfected the port area. She left. I waited and waited bare-chested in a room that I was convinced had been set at freezing. At 10 a.m. the doctor and nurse walked in. And the next thing I knew I was being hooked up and a needle was rammed in my chest and I about hit the ceiling. Within a minute drugs were infused and I felt this tingling, relaxing wave throughout my body. It was the Benadryl. For the next six hours chemo slowly dripped into my system.

When I was done, I felt a bit zombie-like. I called my sister and the first major side effect occurred driving home. It was the infamous chemo emotions of depression, anxiety, crying and anger. I literary ripped into my sister about her driving and had these sudden outbursts of crying, which I apologized on. All I wanted was get home and lay down.

Welcome to the world of chemo, Kip!

2nd Treatment – I drove this time. By now I had lost my appetite, and my taste buds were about 40%. My mouth was what happens when you burn your month on hot coffee or pizza. When I drove home I got another scare. I forgot my sun glasses and even the tiniest burst of sun blinded me. My vision blurred and teared. The sleeve of my shirt became wiping blades.

But the real wake-up call was when I got up two days later and was putting on clothes and the pump tube got caught in my pants legs … when pulling up my pants I ripped the infusion needle out of my chest.

“Fuck! Fuck Fuck!” I screamed, “Oh my God!”

Holly Shit Batman, blood oozed down my chest and chemo was squirting out. I don’t know how, but I managed to push the shut off switch off and apply tissue over the wound. I called the doctor’s office. And since I was scheduled for the removal of the pump at 11 a.m, the girl told me to get in the office once they opened, at 8:30 a.m. Judy drove me since I was a nervous wreck. Fortunately, there was no damage to the port, which was the big concern and since there was only had a few drips left of chemo, again, no concern. (Rule #5)

It was my first indoctrination. What a fricking pain this pump was going to be. I learned to despise it!

3rd Treatment – I got up the next morning with a craving thirst. Once the cool water hit my mouth, my throat started to swell and felt like a cotton ball was wedged down it. I was gasping for breath and swore, I was going to suffocate to death. Shit! I called the chemo hotline, and the girl suggested that I drink warm water, and the comfort–relief– to breathe again was an answer to my prayers (Rule#5).

My taste buds and cold sensitivity went from bad to worse. I could not eat with anything metal (because of the metalic taste), so for a while I had to eat with plastic utensils and this started the habit of wearing gloves. If I touched anything, even “cool,” my fingers and feet numbed and started tingling. During this time, a side effect that wasn’t mentioned in the chemo print-out sheets started: the sharp pain of intestinal cramps and toothaches.

One thing I did start doing was meditate during infusion. This help time go by, relaxed me and it eased some of the beginning side effects.

4th – 12th Treatments– By now the doctor realized I could handle a shorter treatment of around 3-4 hours.

By the 4th and 5th treatments my intestinal cramps got worse. They started around 3-5 p.m. and lasted until 7 or 9 p.m. The cramping only lasted about 20 seconds but in rapid-fire, machine gun sequence, that brought tears to my eyes. The pain was unbearable and pot did little to help when it got this bad.  I couldn’t take any type of pain killers since they caused constipation, which was the last thing I needed. Constipation would put me back into the hospital again. All I could do was lie in bed, breath in and out as if I was having a child and wait it out. Oh those Lamaze classes I took 40 years ago, worked!

Several times, I yelled at God, “Com’on God, give me all you got?” He did! LOL. (Rule #3 and 5)

On the 5th treatment I could smell and taste chemo — so clothes washing became a fetish and so did gargling 3-5 times a day.  Twice a week I was washing in small loads. Chemo caused me to gag at the synthetic fragrance of washing detergent, so I started to hang clothes out to dry in the sunshine. I got additive to the smell that nature provided.

On the 6th treatment (and after two hours of waiting), the doctor would not administer due to a very low white blood cell count, which increase the odds of infection beating down the door. So my treatment was delayed for a week. From that day on I avoided crowds and small groups of people. I became glued to the house and nobody was allowed in if they were feeling sick.

By now (6th-12th treatments) I was back to the aftermath of surgery; force feeding myself. I had no hunger, food had no flavor and cold sensitively was taking its toll on me.

Everything I was eating and drinking HAD to be lukewarm. Ice was taboo. If ice touch my lips, they numbed and tingled.

Are we having fun yet, Kip?

No matter what I did, adding heavy duty wool socks and slippers, my feet got numb along with my fingers. My hands were wrinkled. Fatigue and loss of motivation were daily occurrence. There were days I could not get off the couch. TV became my surrogate friend. I did try reading, but after 15  minutes my eyes blurred, teared and comprehension was almost impossible.   I had learned how to control emotions with the help of marijuana, but nothing stopped me from the suddenly outburst of crying. The gloves were also becoming a nuisance.

Try washing your hands, going to the bathroom or showering with gloves on … Believe me, it doesn’t work. LOL! (Rule #3)

Right after the 8th treatment, on Christmas Day, the shit really hit the fan in emotional and physical side effects. My mom (she drove) and I had been cruising all day, breakfast at Debbie’s house, visiting my 90 year old aunt and ended up at my brother’s house for a royal feast of BBQ ribs, scallop potatoes, salads etc, something I had been craving all day for. But as soon as I walked through my brother’s kitchen door, this queasy feeling hit. I wasn’t hungry. I sampled a rib and it about choked me to death. There were 30 people there. As we all circled and held hands in prayer, suddenly heat and cool flashes hit. I started sweating, shaking and felt claustrophobia.  Then Mother Nature called … for 30 minutes I was glued to the bathroom. I had to get away, fast! I told my mom I wasn’t feeling good and we left. On the way home I ripped into her more than I did my sister after my first treatment. It was scary. When I got home, I apologized to my mom, and then sought comfort on the couch and smoked a bowl full.

10th Treatment – Three days before the 10th treatment, I rolled out of bed. To my shock, I fell on the floor. I tried to move my left foot with little success. I could push the accelerator, but not ease off on it. When I went for treatment, I learned I was getting nerve damage to the top of my left foot. Not good! Plus, the symptoms I was having were very close to MS and diabetes, so additional blood was drawn as a precautionary effort. The doctor quit my infusion of Oxaliplatin chemo, a treatment known for causing “permanent nerve damage” if not administered carefully. I later learned, this was peripheral neuropathy.

11th Treatment – By now cold sensitivity was at an all time high and I had no strength in my fingers. I broke two glasses, a plate, and dropped God-knows how many items. I still wonder, how my cell phone survived? The bottom of my feet were completely numb as if they were shot up with Novocain, but the nerve damage to my left foot was getting better. With that said, I had a hard time walking as if I was on a two inch wide balance beam. Also I noticed, one of my teeth was wiggling, a breakdown of calcium—so I increased my dose of Vitamin C and D.

12th (and final) Treatment,  Feb 10th, 2017 (Wednesday)  – I wasn’t as anxious as I thought I was going to be, because somehow I knew, the shit was going to hit the fan again. God wasn’t going to let me off the hook, just yet. It started when the nurse called me over and informed me, I wasn’t covered by insurance, meaning, my last treatment would be denied. Why? Because my insurance broker wrote March 1st date on the renewal policy, instead of January 1st.  WTF! I drove home and from 9 a.m. to 3:30 p.m., I was on the phone.

After being bounced around from one insurance company rep to another, and even after talking to several company supervisors, I finally encountered a rep able to help me.  The rep recognized a letter I had received from my insurance company back in October, 2016 was the culprit and  caused all my current insurance woes. The letter had informed me that my insurance was going up by 30%.  I about flipped out at the time, but hadn’t known what to do next.  My inclination then had been to roll the policy over, mainly because I had wanted to stay with my current doctors and med team.  That’s what I thought I had instructed my insurance company to do.  However, the bill for my new policy showed a 300% price hike.  WTF again!  Furious and a little desperate, I called the company, and spoke to one of its insurance agents.  The agent talked me into getting another policy, one he claimed would allow me to see all the same doctors and related med team.  I agreed, and was told I’d be getting a revised bill.

Well, my new bill arrived – it was now only 100% higher.  What could I say?  WTF!  To make matters worse (if possible), the agent had put 3/1/16 as my new insurance start date – and that’s what had caused all the mess with my long-anticipated final appointment.  Discovering the source of my insurance problems, I could at last call and straighten out everything, but not without enduring  a cluster bomb of blunders for seven straight hours.  Nonetheless, my insurance problem was, finally, resolved.  Two days later (Friday), I was finally able to start my final chemo treatment.

My youngest son, Dane lived out of town, so he wasn’t around to witness what chemo does. But when he learned of my last treatment he couldn’t get a plane ticket fast enough. He got to witness the last drop of chemo entering my system on Sunday morning: We high-fived when I turned the pump off.

But God wasn’t quite done with me yet. He just had to throw in one more chemo remembrance on Monday morning when I was scheduled to remove the pump for good. I had woken up at 3 a.m. with a jabbing sting in my chest. During the night, the pump tube had wrapped around me, causing the fusion needle to partially pulled out of the port. The needle kept pricking me every time I moved my right arm. By now I just said, Screw it!, and endorsed the pain until I got to my schedule appointment.

After my pump and needle were removed, my oncologist went over my progress for the last six and a half months. He was quite pleased with how I handled chemo and complemented me being one, if not, their best patient. For the next few months I would be visiting the office for blood tests and go over the side effects.

After 3-4 months I will be taking a CAT scan … to see if chemo did its job.

UPDATE
Two weeks after chemo, my side effects continue. The bottom of my feet and finger tips still feel like they have been numbed with Novocain (peripheral neuropathy), so walking is still a challenge and natural appetite is just starting to come back.  I’m still limited to carbs and protein and bathroom trips have declined a little. I have never felt so weak in my life. They say, some side effects can last years after chemo.

 

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COLON CANCER ARTICLES
PART 1 – How I was diagnose and setting up the team of doctors
PART 2 – Removal of the Large Intestine – J-pouch
PART 3 – Marijuana and Colon Cancer
PART 4 – Chemo Treatments and Side Effects