After surgery of a total colectomy and when the biopsy report came in, my surgeon gave me the worse. He had found another tumor, besides the two the CAT scan found. My surgeon said, if I left this untreated, I would have died in six months.
THE FIVE RULES OF ENGAGEMENT
No doubt, when one hears life threatening news as I did, one has to be discipline, so I adapted five rules that I considered a must for survival:
- Listen to Your Doctor – Don’t have them sugarcoat anything, and do what they say.
- Always Take Someone Close to You When Going to Your Doctors – This is extremely important. Many times you are not in the condition to fully comprehend what the doctor is saying and having someone there helps put the missing pieces together and clarifies the situation.
- Keep a Positive Attitude and Be Your Own Advocator – As my chemo nurse said, “I’ve been dealing with cancer patients for 35 years, and could tell if someone was going to have problems, conquer cancer, or die just by talking to them for 2-3 minutes.” My positive attitude focused on: 1) Humor is the best medicine. 2) Work, became therapy for me, it helped prevent Chemo Brain, a condition that causes forgetfulness, lack of multitasking and overall mind awareness. Look at cancer as a challenge, not as a problem!
- Have “Excellent” Support – There is nothing better of getting your close friends, family and, if need, be join a support group. I was blessed with two angel roommates, Judy and Toni along with awesome family and close friends as my support. Friends, who have gone through cancer are your best allies. Thanks to Dean, Gale, Chris, Brian, Greg, Jim, Bo, Gene, Lissa and Michael for their ongoing support.
- Have Faith in the Man Upstairs – God plays the most important role. He’s the one that will get you through this with prayer, trust and unconditional faith. Never underestimate Him, He does work in mysterious ways.
I did not need to broadcast my challenge and medical condition on Facebook or any other Social Media websites until I felt the time was right. I’m doing this NOW to help those in similar conditions. The last thing I needed was a bunch of friends or acquaintances messaging me of, “How Are Things Going?” There are some things one likes to handle on a private matter.
IN THE BEGINNING: Diagnose and setting up the medical team
Back in November 2015 I started to have weird stomach/intestinal problems. I pretty much chalked it up to getting older, I had a lot work going on, and a few unreasonable clients who were demanding this and that.
Then in December I went to Costa Rica for a few weeks. When I returned, I thought I got a heavy dose of Montezuma’s Revenge. This was definitely weird to me since I never contacted Mr. Montezuma before in Costa Rica. Then the pressure of the Holidays and looking for a place to live added more challenges. I had a lot of things on my mind, so I wasn’t terribly surprised when I started feeling very fatigue at around 2 p.m. This was understandable, since my work as a webmaster required me to get up between 3-4 a.m. if not earlier.
In mid-February, 2016, I was walking into the kitchen when suddenly my legs went numb, started shaking, and a strange tingling rampaged through my body. The next thing I knew, I was collapsed on the kitchen floor.
It took a while for my head to settle, but when my mind could finally function, my first thought was, “What the hell just happened?” Using the kitchen counter as support, I eventually inched my way upward. Then, standing again, I felt better, and headed to the couch
Gee Kip. Hello! Something was not right.
The next day, I went to the emergency room and again suddenly found myself in an unexpected, although this time voluntary, circumstance. This time I ended up on a gurney for 30 hours, an IV stuck into my arm, while seven pints of potassium and seven pints of Saline slowly dripped into my body. Interesting!
Yes, I was extremely dehydrated and my potassium level was critical. According to the ER doctors, if it wasn’t for my size and weight, I probably would have had a heart attack. The doctors all concluded I had picked up some parasite when I was in Costa Rica and/or some type of intestinal/stomach bacterial or virus. I was treated with two every expensive and huge horse size pills. However, after a few days my condition of Montezuma’s Revenge did not improve. In fact, I started to get more of these weird dizzy spells.
I had set up an appointment with my General Practitioner, and again cancer was not even considered. The doctor concluded that I simply had contracted a very bad case of diarrhea. He gave me a list of foods to eat, and prescribed loperamide (Imodium) for me, along with an assortment of anti-bacteria/virus pills.
Throughout the next week, I was drinking massive amounts of water and Gatorade, and consuming high-potassium foods, such as bananas, oatmeal, and salted crackers, but my condition did not improve. My continually failing health, forced me to set up another appointment. This time my GP sent me to a gastroenterologist. After 30 minutes of examination and a lot of questions, the gastroenterologist concluded that I had something more serious than diarrhea. She theorized that I may have developed a perforated intestine. When I asked her, “Could it be cancer?” Her response was, “You do not have any symptoms that would indicate that.” Her reassuring smile helped ease my doubt … at least for a while.
Although my gastroenterologist also indicated that she might know more after the colonoscopy results, what was clear to me then overall, was that cancer had been relegated to the bottom of the totem pole. Such began a long battle for me, one that would soon be a game changer for the rest of my life.
THE INFAMOUS COLONOSCOPE
We all likely cringe at the very thought of having a video tube rammed up our ass. I had one of my angels, Judy, give me a ride to the procedure. After all the insurance and consent forms were filled out, I waved goodbye to Judy, and was led into a room which contained numerous beds, each separated by a screen. Actually, the procedure is fairly simple and pain free: get naked, put on a patient gown, get an IV stuck in your arm, and let an orderly wheel you into the O.R. I watched the doctor mess with the Colonoscope, as the nurse opened up the floodgates of whatever drug was going to knock me out.
I was told to turn on my side and felt my ass getting cold as the gown was opened. That’s when the lights went out.
After I awoke, and became coherent enough to maneuver, the nurse walked me to a chair and told me to wait there for the doctor. After a while the doctor arrived, and announced to me, “You need surgery ASAP. Your large intestine is cluttered with polyps. I will send the images to your gastroenterologist, and you’ll need to contact a surgeon.”
Surgeon? Why? bounced around in my head.
A week later I was back waiting in the isolation of my gastroenterologist’s exam room for about 20 minutes wondering what the colonoscopy results were. Cancer was never in my mind. Finally, my gastroenterologist entered. She had started with the typical spin, “How do you feel?” when I blurted out, “Please doctor, no beating around the bush, tell it to me straight!”
She bluntly responded, “Mr. Ives . . . Colon cancer has riddled your larger intestine. Unless you have surgery, you will be DEAD within a year.” She continued, in the same no-nonsense tone, “ . . . And you need to set up an appointment with an oncologist.”
Oncologist! Plus the dreaded “C word.” This combination of concepts, a terrifying one-two punch, nearly knocked me to the floor. This verdict had been the last thing I suspected. Suddenly, scary thoughts raced through my mind. Cancer? Oh my God! Now what?
Needless to say, I’m surprised I made it home driving (violation of Rule #2). The 20 miles home was the longest drive in my life. All I could think about was the C word: how I’d deal with it, how it would affect my family, friends, and most importantly, my kids. I knew my kids would be devastated, especially my oldest son, Tyler. Tyler had just lost his father-in-law to cancer last year. I’m sure the thought of losing his dad, and the emotional impact my grand kids (his children) would experience losing their last grandfather, would be beyond heartbreaking – for Tyler and for all of us. I prayed. (Rule #5)
Home at last, I laid in bed, as tears ran down my cheeks. I called my mom. There was dead silence on the other end of the phone after I told her my grim news. Then I called my kids; their voices cracked as they talked to me. I could practically see the tears rolling down their faces. I tried to reassure them that I was a fighter, and that I was going to win against this demon raging through my system …
In case my kids doubted my fighting prowess, I offered this advice, “Talk to your mom.” I assured them that if any one person in the world would know me as a fighter, it would be their mom, who learned all about my fighting ability and tenacity during our divorce proceedings 25 years ago. LOL. I think my quip put a smile on their faces. This was a good thing: Positive thoughts (Rule #3) with a bit of sarcastic humor.
Humor is what helped me deal with the ongoing challenges of cancer.
I had no anger, and could care less of how cancer started within me. All my doctors said, “It happens to the best of us. You could be a health frantic and still get it!” I couldn’t relive the past, so I was determined to fight this monster with every breath I had, but such an enormous task, such an overwhelming challenge, required preparation: I had to know my enemy, the monster; so I went online and studied, researched, made notes, read chats and blogs, and gathered info on herbal cures, etc. I prepared.
Being a webmaster and internet marketer, I already had the expertise, that much of what you see and read on the internet is bogus. I went to reliable websites, many times merely skimming through their articles, or avoiding their featured content altogether and skipping right to the chat rooms or comments. Over the next few weeks I literally read and researched 1000 pages. You are not going to get better information than the firsthand narratives others share of their individual experiences.
By the next day after my diagnosis, I started a full blown personal treatment using anti-cancer herbs, spices, and foods. But that approach was short-lived, especially the fruits and vegetables component, which I’ll explain later.
I took me three weeks to get an appointment with an oncologist and four weeks to get an appointment with a surgeon. Insurance was my main obstacle, and it started to become a major hurdle as I will vent more about. I was starting to stress out: Stress is Cancer’s fuel. Now the word “time” became my enemy … at every delay the cancer grew worse. I had a hard time sleeping, and found myself getting weaker.
APPOINTMENT WITH THE ONCOLOGIST
My brother, Dan (Rule #2) went with me on the 50 mile drive to meet with my oncologist the first time. He drove for obvious reasons. I wasn’t in a position for any more bad news. We entered a waiting room packed with patients, all of whom had the look of desperation. It was depressing and I swear, I wouldn’t have been surprised me if Death himself walked in.
After about an hour of waiting, I was called into the exam room. The nurse drew blood, checked my weight and blood pressure, asked questions about my health, etc., then shuffled Dan and I into the doctor’s office, where again we waited until my oncologist walked in holding my file, which contained the colonoscopy reports/results. He was a physically fit man, slender and Russian. My brother and I had a hard time understanding his broken English, but we both liked him. He asked, if I had talked to my surgeon, and if a CAT scan had been scheduled yet? I answered, ‘No, a CAT scan had not yet been scheduled for me.”
He put it to me bluntly; if I wanted to live, I’d have to undergo a partial colectomy. In laymens terms, a colectomy involves the removal of part or all of the colon (a partial colectomy or a total colectomy). This was bad enough, but he also insisted that saving my life required that the colectomy be supplemented by chemo AND radiation treatments. His assessment thus added another terrifying C word. Those two words, Cancer and Chemo, sent chills down my spine.
At this point, I was thinking, Loss of my hair, nausea, fatigue. I was contemplating all the nasty side effects for which chemo and radiation are known for.
He added, “Mr. Ives you will also need a port implanted in your chest to take the chemo and to draw blood.”
Jezzes, now I was thinking, Port? What’s a fricken port? More research!
At this, I understood for the first time the oncologist’s main job. Oncologists are really Generals. Their job is to prepare for battle by assembling a team of the most qualified medical professionals possible. I was nearly ready for battle, and determined to win the war against cancer (Rules #3 and 5).
Dan went with me to my first appointment with the surgeon who held nothing back. We both liked him. He was about 50ish, with a diamond ear piercing, and he walked in wearing his surgical gown. He had reviewed the results of the colonoscopy and, he told us, it was bad, but he also wanted to see the CAT results before offering us any definitive conclusions.
The surgeon was confident that I had at least Stage 2 colon cancer. He summarized what he envisioned as the next clinical step: After surgery, a slice-and-dice biopsy, of the organs, would be performed to see the true extent of my cancer, and to determine exactly what type of chemo treatment I would need. The surgeon then presented me with some alternative procedures to consider like, various anti-cancer medications and was very adamant about not doing the natural foods, herbs and spices. For about 20 seconds, I thought about all I had been told, then asked Dan, “What do you think?”
My bother put it bluntly, “Your decision.”
I nodded my head, “Okay Doctor … lets go for it!” (Rule #1)
I had also learned from my surgeon, the colonoscopist had tattooed the cut off point (pun intended) of my large intestine that were destined to remain in my body, and intact. My mind chuckled, My first tattoo, a neatly drawn sketch placed where the sun don’t shine. (Rule #3)
The surgeon assured me that, after surgery, I would continue to live a normal life. He told me that I’d be hospitalized for 5-7 days, it would be tough for about three months until my body started healing from surgery, and that I should expect a year of recovery as the body adapted to its new intestinal track.
Doctors are funny. They consult with the other doctors and colleagues to make sure patients receive correct and consistent info and to make sure they don’t give conflicting reports in a, “He said, She said,” scenario. It’s a form of legal collusion to help immune them from any type of future (and often messy, innuendo-infused) legal difficulties. Okay, I can deal with this! (Rule #1 and 3).
When I asked about, if I was going to have a colostomy bag,” he surprise me by saying, Probably not because I was in good shape. Good shape? Me?: 25 pounds overweight, a chocolate addict and smoker? Well, it’s true I occasionally exercised. Perhaps God gave me heavy brownie points for that.
THE CAT SCAN
It was around late April, 2016 and the whole CAT scan process was a fricking nightmare. All the paperwork/insurance got messed up, and the appointment was first assigned to a local medical facility, where the ONLY available opening was four months away. This incredible scheduling mess-up meant I had to spend nearly two agonizing hours on the phone, changing the appointment location from my local facility to somewhere almost 50 miles away. The relocation was necessary so the scan date could be sooner than the original appointment, which had been scheduled for sometime in August. Time. I was fighting time. As always.
THE POW WOW BETWEEN SURGEON AND ONCOLOGIST.
The CAT scan was important! It would check for other signs of cancer and determine if other varieties of cancer had spread into my upper body (lungs, liver or the worse, Pancreas). If it had, it would put be into a different league of treatment altogether. However, the results were … good and bad.
The Good: My cancer had not spread.
The Bad: Two large tumors were found at the lower part of my colon. This discovery was a major game changer. With this new finding, I graduated from needing relatively routine surgery (a partial colectomy), to needing very complex, severe surgery: a total colectomy, along with a J-pouch.
What the hell’s a J-pouch? Again more research.
The bottom line: A life-changing, life-saving operation. Shortly after my CAT scan, I had an appointment with a psychologist and my surgeon. This meeting was needed to determine if I would be mentally and physically able to go through the rest of my life with the oxymoron of having a tiny large intestine. The negatives were addressed. I would be subject to dehydration, since most fluids are absorbed through the large intestine, and it would thus be common for me to feel dizzy, especially if I stood up quickly. There would be times I’d feel weak and tired because my body would not be able to process nutrition to its fullest. I would also have to watch and maintain my potassium levels – I’d have to practice the same self-monitoring that began this whole ordeal many months ago, when, alerted by my low potassium readings, I wisely decided to head for the emergency room. The other thing I would experience would be frequent trips to the restroom – as many as 8-10 trips a day, or even more. Okay, I could deal with that (Rule #3).
Bathroom Trips? – Funny, it was one of the most understatements of my condition.
MY FIRST SURGERY – THE PORT
After some minor research, I discovered that the port is a small disc made of plastic or metal about the size of a quarter that sits just under the skin and is implanted in the chest or arm. The medical term for the procedure a port enables is intravenous treatment or IV treatment. A soft thin tube called a catheter connects the port to a large vein. The connector vein in my case was the one leading directly to my heart. This is where my chemotherapy medicines were given, through a special infusion needle that fits right into the port. You can also have blood drawn through the port.
Ahh … the things you learn so frickin’ fast.
My mom drove me to the surgeon’s facility, which was located in what looked like an office complex. The waiting room was huge; it must have had 80 seats, and reminded me of a DMV, with about 10 windows. At the far right side of the waiting room was a check-in counter. I checked in, and expected to be given a number. Next thing I knew, my name was called and I was assigned to a window, where I was to fill out the insurance BS and liability forms. Within 20 minutes, my name was called again. This time I was being led through the inner doors, and an hour later, all drugged up, I was handed into my mom’s care.
For the next three weeks I wasn’t allow to lift anything over 5 lbs. I had what looked like a huge boil on my chest. It was eerie, feeling the catheter through my skin that ran right to my heart. But the worse, the port itched like hell for the first week and that alone almost drove me to the nut house.
While my oncologist wanted for me to undergo both chemo and radiation treatments, my surgeon disagreed. “Only the chemo,” he insisted. I’m sure they had some minor debates, but in the end, chemo won.
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