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I do very few monologue style episodes, but once a year, as a colon cancer survivor myself. I share my journey, hoping it will get at least one person to get screened. Let's start with a resource that helped me and one I support. The Colorectal Cancer Alliance can be found at CCA.com
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To empower a nation of allies who work with us to provide support for patients and families, caregivers, and survivors; to raise awareness of preventive measures; and inspire efforts to fund critical research.
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Insert Episodes
3 words you don't want to hear? -
It is cancer.
Three words. Three life changing words.
According to the American Cancer Society, there will be 1,638,910 new cancer cases in 2012. Break that down daily, and 4552 people each and every day will hear those three words.
Wednesday, August 22nd was my day to hear those three words.
Here is a look at my week:
On Monday, I visited a gastroenterologist for my first colonoscopy. I turned 50 last year, so I knew this screening was necessary. I had put it off, but at my annual physical a couple months ago, Dr. D chided me for not getting it done. He gave me a couple referrals. I picked one and set up the exam for the first day of my vacation. I had heard all the horror stories about the prep work necessary, and I was not looking forward to it. Much to my surprise, the toughest part of the prep was no solid food the day before. I opted for Osmoprep pills, rather than the chalky drinks no one seemed to like. 32 pills and a few trips to the bathroom and I was ready for my appointment.
Other than the IV insertion (I’m a bit of a needle-phobe), the appointment was simple. I was sedated just prior to the exam and woke up quickly in the recovery area. Propofol is an incredible drug.
Dr T. came in to discuss what he found. Two polyps were removed and an “ulcer” was found in the sigmoid colon. He didn’t think it was serious, but he grabbed tissue samples and wanted them checked at the lab. He told Cindy and I he would call with the test results in a couple days.
Everyone can remember where they were when major events occurred in the world. Reagan’s shooting, the Challenger explosion or the Twin Towers falling all bring back vivid memories of where you were or what you are doing. On a personal scale, the same thing happens. I will never forget answering the phone as I drove up the Gilbert Rd off-ramp from the southern Loop 202. It was Dr T.
“We have the test results back” said Dr. T. I replied “OK”. After a slight pause, he said, “It is cancer”.
For me, there was no wave of fear, no feeling of nausea, no flood of tears. It was a desire to ask questions and find out what I had to do next. Fortunately, Dr T. did not feel I needed immediate treatment. His office would schedule a CT Scan (Monday ”“ 8/27). This is important as it will determine what stage my cancer is in, or to put it another way, if it is localized or has spread. Then, his office would schedule a surgery consult with a colorectal surgeon (Wednesday ”“ 9/5). There definitely will be surgery.
I mentioned my upcoming trip next week with Cindy to New York for the U.S. Open. He insisted we go. “Let’s get the scan done before you leave and we’ll get you in with the surgeon when you get back.” The lack of a sense of urgency was calming.
I sat for a moment, deciding who to call first. My wife or my son. I opted to call Kev first since I wasn’t totally sure how I would handle myself during the call and I wanted to “practice” with Kev before I called Cindy. It went very well, and Kev, much like his old man, wanted the facts and details.
The call to Cindy was just as smooth. What do we do next and let’s not get ahead of ourselves. Let’s follow the plan, stay positive, and get to the other side. She left work to come be with me the rest of the day. I told her she didn’t need to, but I’m really glad she did.
So, why this post on TPREG? One, I know Jay. He likes stories about life as much as he likes posts about escrow. He also hates cancer with a passion and I like riling him up. Secondly, this is a great platform to get the message out to all of you over 50 that have put off getting “scoped”. Why wait? Colon cancer, when detected early, has one of the highest cure rates. I’ve heard this many times, and I know you have as well, but I still waited over a year to get my colonoscopy done. If you are reading this and under 50, think of family and friends that need to get screened. Ask them to go get it done.
Finally, I would like to let everyone out there know one more thing. The three words that matter most to me right now?
I will win.
Episode 2 - Top 10 Takeaways from Colon Cancer Surgery - Sep 26, 2012
In last month’s post, I described my feelings and experience when you hear the news that the diagnosis is cancer. Since then, I have had a colon resection, or in regular speak, they cut out about 5 inches of my colon to remove the affected area, and then re-attached the two ends. Colon is good as new.
Below is my top ten list of takeaways as a surgery noob. Yep, 51 years old and I had never been admitted to a hospital before. When looking for clinics treat various conditions,
For some of you, my list may seem obvious. For any surgery virgins out there, keep this handy for your inevitable first time.
10. The surgical staff at Banner Desert Hospital is awesome!I have no other staff to compare my surgery and recovery crew to, but I can’t imagine there is a better team out there. From check-in to pre-op to recovery, they were amazing.
9. Let the student nurse insert your IVWhile getting prepped for surgery, the nurse introduced me to Melanie, a nursing student from ASU (Go Devils!) The nurse asked me if I minded if Melanie inserted my IV. I hate needles as much as anyone, but I figured why not get a little good Karma working my way and let her practice on me? Other than a little blood that spurted on her and the floor, she did a great job.
8. Phlebotomists are modern day vampiresNo one told me how much blood is drawn during a hospital stay and recovery. I made it to my hospital room at 8pm on Friday and by midnight Monday, no less than 12 blood draws were taken. Worst of all, it seems that most draws occurred between 10pm and 4am. Why that time? Easy. The phlebotomists are vampires. A vial for the lab, a vial for them. Combine that with the insane number of draws and it makes perfect sense.
7. Hyperextending your elbow during a blood draw makes it way easierWhile I’m on the topic, one kind, gentle, middle aged, non-vampire phlebotomist gave me a great tip about keeping my arm as straight as possible during the draw. It was amazing how much it helped. I will forever remember her tip and attempt to hyper-extend my elbow every time a vampire phlebotomist comes near me.
6. Walks around the nurses station can get competitiveRegardless of how much you hurt, if another patient is taking a walk at the same time, you become possessed to complete your lap faster than them. It just happens.
5. Time can stand still the first few days after surgeryThis one is unreal. A large clock is across the room from your bed. It is not your friend. I would wake up, look at the clock and the time was 1:15. I would fall back asleep, into what felt like a deep sleep and then wake up, look at the clock, and the time was 1:20. This happened more times than I can remember.
4. Hospitals are for sick people. Get out and recuperate ASAPEnough said.
3. Much like building a business relationship, create bonds with the nursing staff. It helps.Why wouldn’t you want a good working relationship with the people that can make you more comfortable? Banner Desert nurses were incredible.
2. Pain pumps rock!As soon as I was able to understand how the pain pump worked, it became my little friend. When the light turned green, all I had to do was push it for a little morphine in the drip. If offered, always accept the pain pump.
1. There is nothing better than seeing your spouse come through the door.I told my wife prior to surgery that I did not want her holding a vigil in my hospital room. If I was sleeping, take advantage of the time to get home and get some rest or take care of things she needed to do. I told her I had around the clock care so I would be fine. However, to be honest, on the rare occasion she was not there when I woke up, I really wished she was.
Update My surgery was Friday, September 14th. Monday night, September 17th, Dr Buckmire dropped by with the pathology report. He was able to grab 15 lymph nodes near the cancer site. 9 tested positive for cancer. It only takes 1. Much like I knew surgery was going to happen when I heard the words “It is cancer” after the colonoscopy, I knew immediately that chemotherapy was the next step. No ifs, ands or buts.
That process starts this week with oncologist appointments. I will be interviewing at least two, maybe more. From my doctors, and cancer survivors I’ve talked to, I’m looking at treatment that lasts something in the 6 month range.
Bring it on.
Episode 3 - Therapy Treatment Begins - Oct 23. 2012
Let’s do a quick recap.
August 20th – Routine colonoscopy because I’m 51. Find a lesion. Sent to lab for testing
August 22nd – Doctor calls and says “It is cancer.”
August 29th – Take wife to US Open in NYC for our 25th anniversary because doctor said it was ok to go.
September 14th – Get colon resection surgery to remove cancer and part of my colon.
September 17th – Told by surgeon it is Stage 3 cancer and I will need to see an oncologist.
September 25th – Meet Dr Mendoca, my oncologist. She says, “You are a very lucky man.”
October 18th – Get PET Scan (Positron Emission Tomography w/ radioactive sugar water!)
October 19th – Get Power Port installed in my left chest.
That brings me to today. October 23rd. My first of 12 therapy treatments to rid my body of cancer. I know it is “chemotherapy”. I also know everyone calls it “chemo”. I am choosing to use the other part of the word and call it “therapy”. Why not?
Cindy and I arrived at the doctor’s office for my 10am appointment. First, we meet with Dr Mendonca. She confirms the PET scan did not show anything abnormal, which is good. A quick look at my surgery scars and we head on over to the “lounge”. It is filled with patients. One woman is knitting. Another woman is sleeping. Many are reading. I do not see a single laptop, until mine comes out of the backpack. Really good wifi and lot’s of power. It will be easy to get a lot of work done here.
As a newbie, it’s easy to spot the veterans. They arrive, grab a seat, and easily strike up a conversation with the nurses. That will be me soon. The nurses here are awesome. They sit and visit patients, discussing their treatment or asking how their family is doing. I am going to like it here.
Diane, one of the nurses, comes over to say hi and get my therapy started. A special needle is jabbed through my chest into the port. Just a little pinch and it’s in. Cool. I will have this connected to the port in my chest for 48 hours. More on that later.
First, I receive a couple different medications to help with nausea. After that, it’s time for part one of my cocktail. It’s a combination of oxaliplatin and leucovorin. It takes a couple hours for this part of the treatment.
Part two has to be infused slowly, that’s why I have to stay connected for 48 hours. It is a drug called 5-FU (Fluorouacil). This requires a pump or “party ball” as the nurses call it to be installed. This rubber ball will be attached and pump 5ml an hour into me until empty. Cindy and I are still trying to come up with the right way to carry this around. One suggestion, from Lou in Idaho, is to get a chalk bag from REI. These are used by rock climbers and they connect to your belt and are the perfect size for the pump. Lou knows this because she went through the exact same therapy treatment a few years ago and is still cancer free. Two days later, I return to the office to have the empty party ball removed.
The above therapy will happen 11 more times. Every other week until we are done. It looks like I will get a break Thanksgiving week as no one will be around on Thanksgiving Day to remove my party ball. I’m fine with the week off.
The toughest part of therapy is yet to come. I’ve discussed the side effects with Dr Mendonca and the nurses in the lounge. No hair loss, but maybe some thinning. I can handle that. Possible nausea but with today’s meds, it is totally controllable. Neuropathy is highly likely. Tingling, numbness, sensitivity to cold or even pain in the hands, feet, arms and legs are the main symptoms of neuropathy. There is also an overall malaise that many people experience on this regimen. Everyone is different. I like knowing what may or may not happen. I also believe a positive attitude can make a difference.
It really is a simple choice.
Like choosing to call my treatment therapy.
Episode 4 - Chemo and Caffeine - A True Story - Nov 20, 2012
This is part 3 of my ongoing series as I detail my experiences in my battle with colon cancer.
Last month, I covered my first visit to the infusion center. Today, I would like to tell a story that just might help others caught in the same position down the road.
The list of possible side effects for my treatment is long. Fatigue, muscle ache, nausea, neuropathy, constipation, diarrhea (both?, huh?), etc. The list goes on and on. So when I found myself extremely tired with a killer headache right after my first session, I chalked it up to the therapy. A little nausea was handled with the meds supplied by my oncologist. I was expecting these symptoms to last a day or two, based on conversations with the staff at the oncology center as well as past colon cancer patients.
7 days later, I still was not “right”. That’s when it hit me. “It” being the nearly gallon a day of diet soda I consumed over the past couple decades. Due to the immediate onset of neuropathy right after my first therapy session, I could not drink any cold drinks without experiencing a severe scratching sensation as I swallowed. So, I went from roughly 800mg of caffeine a day to zero on the same day I had my first treatment. Combine that with the fact that I had never tried to kick the caffeine habit before, and it’s easy to see that I attributed all of my distress to the chemotherapy. Unfortunately, I do not like hot caffeinated drinks. No coffee or tea. Either one of these would have prevented my caffeine withdrawal symptoms.
Now, this is usually where the lectures about the evils of diet soda start. Trust me, I have heard them all. I have had a total of one can of soda (room temperature) since October 23rd. I have consumed more water in the last 2 ½ weeks than in the last 2 ½ months. I am going to use my therapy as an opportunity to rid myself of the diet soda habit.
As for the caffeine, I am now taking about 250mg a day to keep me level. I will also wean myself off of caffeine eventually. It is just not prudent to try to do it at the same time therapy begins.
My takeaway? I will always ask anyone heading down the chemotherapy path the following question. “Is your caffeine consumption primarily from cold drinks?” If the answer is yes, then they need to be warned about neuropathy side effects and caffeine withdrawal and to be prepared to supplement caffeine when treatment begins. In fact, if you are reading this post, you can now issue the same warning.
Therapy Update
As I type this, I am about a week removed from therapy session No. 2. The symptoms were much more manageable with some caffeine in my system. Neuropathy and fatigue are my main issues. There is a cumulative effect as the treatments continue, so we will have to wait and see if the recovery period starts to lengthen.
Tales from the Infusion Center
At every therapy session, I have to hang out at the infusion center for 3.5 to 4 hours. I get a comfortable recliner, wifi, power, and roughly 12-15 comrades undergoing their own therapies. As you can imagine, it is quite a range of personalities. A few sleep during treatment. A couple like me bring laptops and iPads. Still others sit and visit. But the most entertaining compadre so far was at my last session. We’ll call him Ned. I have no idea what his real name is. Ned and his wife, Nadine (again, made up) are probably in their late sixties, early seventies. He sat next to me and I cleared my stuff off of the table between us to give him some room. Out came a portable DVD player. Good, I thought. I had work to do and I was afraid Ned would want to talk.
So Ned gets hooked up, and he’s full of jokes and one-liners. Some funny, other not so much. His wife and the nurse humored him, so all was well. Ned settles in to watch his movie, inserts his earphones, and upon starting the movie, does not realize he does not have the earphones completely plugged in. The entire infusion center was treated to a scene from, I think, “The Untouchables” for about 20 seconds. It took this long for Nadine to realize what Ned had done and to loudly bring it to his attention. I’m pretty sure Ned just thought the volume in his ear buds was kinda low.
About a half hour later, Ned
