COLONOSCOPY – POLYP GARDEN

Fresh from the colonoscopy 2 weeks ago, I received results: two polyps… 

Benign adenomas, precancerous, come back in a year… *Sigh*…

It was disappointing learning of the polyps since it has been only one year since the last colonoscopy and my results were clean then, so I was hoping for a repeat of that. But instead two tiny polyps still sounded alright, I could live with that. They would be biopsied and results would arrive in a few days. So my results today showed the polyps were “benign adenomas”, or precancerous polyps. That is not good, and what the heck does “precancerous polyp” mean anyway?

Polyp Phases

Phases of a polyp

polyp-phases-2

I’m guessing mine was at “severe dysplasia” stage, as it was benign, yet still precancerous.

 

 

 

 

 

 

Everything I’ve read about adenomas is that it will take between 2-10 years for one to develop into cancer. For a polyp to form and become precancerous within one year tells me that my polyps were under unusual conditions to become precancerous so early. This year has been unusually stressful, and unfortunately I have an unusually poor way of handling stress, ie. I hold it in. I convince myself it could be worse, I can handle it. This explains my “polyp garden” colon and why my resistance to growing these little guys is so low. This also explains why for survivors of colon cancer we have to stay on top of our maintenance exams (scans, colonoscopies, blood tests). I need to stay on top of my tests, I need to manage stress better. I’ve been doing the former exceedingly well, yet there’s more progress to be done on the latter.

In May 2016 my oncologist noted on my CT scan results a spot in my liver that he wanted to watch, and told me to have another scan done in three months. No worries, I thought, it’s too soon after chemo treatments, it must be something else. I did not worry. During the summer we started a new business, had Matt’s daughter and her fiancé move in with us, we had a series of financial difficulties and some personal issues come up all at once. I began losing sleep and obsessing over order in my house, an effort to keep some sort of control over a huge period of change. I (all of us) began feeling overwhelmed and out of control. We all worked from the moment we woke to bedtime every day for months straight with no breaks just to keep ahead of bills. I was on top of everything, I felt I was handling it, but was exhausted all the time. It was a miserable, stressful time for me and my family, and I began to worry about my health. I’d had a tickle in my chest for months. Thinking back about what my oncologist said about the spot in my liver, I could not let go of the fear that cancer had come back and settled in my lungs and my liver. I had no money to get the follow-up scan, and decided it would not hurt to put it off for a month or two until we could figure out our finances.

The fear overwhelmed me and I believed I was sick again. I worried for Matt, my parents, my friends, I dreaded telling them I was going to die. I worried about going through all of the diagnosis, treatments, months of uncertainty and sickness again. If this disease could come back so quickly twice, it must want me; I must be doomed. Things got extremely desperate and I could not shake the fear of not knowing. So I scheduled the scan and results came back clear.

I celebrated the good news, as did everyone around me. I had not made my concerns public, but my family knew. And yet the fear came back. The tickle in my lungs was still there, and I began to wonder how much of my chest the CT scan covered? I had not had a blood test in a while, and realized it was time. I was only a week or so off my schedule, so I scheduled the blood test and met with my oncologist. The blood test came back clear, the oncologist hypothesized that the tickle was coming from a new allergy. Again I felt better, but there was still an insecurity in my mind. No spots in my liver, no sign of disease in my blood,… the colonoscopy should turn out healthy too, right? With all the stress over the summer, what would it take for the cancer to come back? Where would it? After the first occurrence of cancer in 2012, it was only 2 1/2 years until the second occurrence in 2014. It has been about that long again, and I was inconsolably worried.

The colon prep this time around was miserable because I had a cold, too. Ugh… no fun. Coming off of the anesthetic the first thing the GI said to me was he found two small polyps. He did not think they would be problematic, but they would be biopsied all the same. The fact that the results came back precancerous is a red flag that I am not doing enough to manage stress.

The moral of the story is, I’m glad that I am being so closely monitored, that I have great health insurance (thank you Obamacare), I’m glad that at this stage the polyps could be removed with no incident. I am safe again, for now, thank goodness. I will continue practicing stress management, continue getting enough rest, exercise, good nutrition, laughter, and

I will continue with my maintenance exams.

polyp_colonoscopy

How polyps are removed, a retractable wire loop severs the neck of the polyp.

polyp_colonoscopy

Little bastard

COLONOSCOPY IV

Colonoscopy IV is finished!

For a 2-day prep/recovery, the procedure goes rather quickly. I was in at 8:30am and out by 9:10am.

champagne_toastThe doctor had pleasing news when I woke from twilight: clean as a whistle. No polyps, nothing unusual. Hallelujah! Ever since colon cancer in 2012, part of my maintenance plan is annual colonoscopies and scans. I’m on 4 of 5, so after next year’s exam, I can move out to 1 every 3 years, yet will probably continue the annual scans and quarterly blood tests (also normal maintenance protocol) for five more years.

For a polyp garden (my colon), the crop was bad this year. Nevermind the chemo cleanse I got for 8+ months. So, anyway, I have no worries there.

I feel like an easy patient again!

1 YEAR REVIEW: HOW DID IT GO?

Health Check: 1 Year Review

I went in to do my 1-year maintenance colonoscopy at Providence Milwaukie Hospital about two weeks ago (well, it was more like a 1-1/4 year colonoscopy after  scheduling/insurance reviews, etc. Heck!). So I finally got in to do it. Hell-upon-hell, I can’t wait until I can spread these out to three years instead of annually (after about a 5-year maintenance period). The prep is just so dang uncomfortable. It was the kind where you have to fast from morning, then drink 1-1/2 gallon of terrible tasting solution over a 5-hour period, ten ounces at a time. I was so waterlogged, I felt sick and didn’t finish the whole bottle. But by that time nothing was coming out of me but clear water, so heck with it.

The good news came right away. After the exam Dr. Poorman said that there were no masses or concerning features, although he mentioned seeing some diverticulosis, an asymptomatic irritation of the lining of the lower bowel, typical of people my age and older. It is nothing to be alarmed about, and he recommended eating more fiber. Good grief, I how much more fiber can I possibly eat given my high-fiber diet?

Then he recommended a CT scan to look into surrounding tissue and organs, also just a maintenance exam. So I went through the scheduling and insurance review rigamaroll, fortunately I could schedule for the following week.

The CT scan requires a fast for four hours, ok, and then an hour before the procedure a liquid prep of 16 ounces of contrast solution, which I remember tasting worse the last time than this time. I guess I was really hungry?

The actual procedure is pretty quick, and the radiology technician was awesome at explaining the whole process so patiently, professionally and thoroughly. Everything went smoothly, including the IV. I think only one before this has ever been so painless, woohoo! So then a few days later, the office called to reconfirm the earlier test results that there was nothing outstanding shown in the scans. Double WOOHOO!

Happy news. So that will do me for another year.

Wow, I’ve passed all my 1-year anniversaries

–      Diagnosis (Feb 23)

–      Colon resect/j-pouch/ileostomy (May 23)

–      Ileostomy take-down (Jul 11).

One more anniversary coming up:  The hernia surgery (Oct 15).

Now, here I am

It is all a memory, and getting more distant. Just some lingering reminders like the scars on my abdomen (battle wounds), some extra diarrhea (punishment for eating the wrong things), more gas (hmm, endearing), some shortage of energy (compared to BC – before cancer), and being initiated as a statistic in the ever-growing colorectal cancer club!

Well, it could be worse!

RUNS IN THE FAMILY

I got a stunning phone call from my brother today,

…he received his colonoscopy results in the mail. One of the polyps that had been removed was precancerous.

His Facebook update said this about it:

“My sister’s cancer spurred my early detection which caught a pre cancerous polyp. MY SISTER SAVED ME FROM GETTING CANCER!

Thanks, Sis, you don’t have to get me anything else for my birthday this year.”

Whew! You got it done, Bro! Congratulations on taking the hard step to get examined.

..And by the way, I never get you birthday gifts. 😉

Advice which I think is important for patients of the colonoscopy:

You should tell your GI Dr when you go to see him/her that he should include a copy of the colonoscopy report with his letter. Patients will want to see it, and should have access to it, especially if they have a suspicious ‘something’ in their colon/rectum. I got a full report even before I woke in the hospital bed, and was able to start research, plan, and let the news sink in. You may not get a real diagnosis like I did because it may not have been advanced like mine was, but you would have had answers to some common questions, like:

  • where were the polyps located
  • how big
  • what shape were they’, etc.

It kind of bugs me that he didn’t get this valuable information.

ANSWERS ARE HARD TO COME BY

2/28/12 Tue. AM

Diagnosis:

Confirmed adenocarcinoma located at junction of rectum & sigmoid. 

I received the diagnosis from the colonoscopy and CT scan yesterday afternoon from my doctor. Still there were missing parts. So, the CT scan will show a blurry version of possible additional locations of cancers, but then there were spots on my liver, which could be nothing or… something!! Until I get a PET scan and ultrasound, I will not know the extent of any metastases. So, darn, I hoped to have answers, but instead more questions came up.

Tests/treatment:

Prepping for PET scan and ultrasound. Should clarify some spots on liver – cysts or masses? I am carbs-only today, then fast for tomorrow. Appointment at 11:15am. Then I will be radioactive for 24 hours! I have to stay away from small children and pregnant people.

Today’s observations:

I still feel fine! Had to get a little creative, as I’m not familiar with a low-carb diet. Did fine, ended up digging into the sardines we inherited from our neighbors (thanks Bill & Lisa!). Matt has developed some strange digestive symptoms. It is difficult to tell if we should be alarmed, as he tends to internalize stress in his gut, but he has been horribly uncomfortable, and has symptoms similar to mine. His colonoscopy this Fri. will hopefully alleviate the worry.

He is endlessly amazed & baffled by my optimism, and tells me so many times a day. He is such a hero how he manages receptionists, insurance and examines the doctors!

Tonight we were to call my parents to discuss their visit this coming weekend. I called at dinner to let them know Matt was late, and they started asking questions that Matt & I hadn’t really discussed yet. I didn’t know what to tell them, but knew they needed to prepare for a long trip! Also, they were worried for their daughter, being so far away. So Matt came back, touched base with some neighbors, and then we called my parents.

In that time, Matt had my parents totally at ease, had presented them with social plans he had just arranged, and was joking and teasing, like he does.

It made my heart so proud to think that:

1) my parents can look forward to their trip,

2) they can be here with me while I’m going through my trials,

3) Matt is bonding with them.

COLON TALK

2/26/12 Sun AM

This morning I set up an online profile on the American Cancer Society website, WhatNext.com, and my first post went like this:

“Whee! I’m on!

Yeah, ‘Oh no‘ is right. What the heck? Ask any of my friends or family and they’ll tell you they are just as surprised as I am about the cancer results. I am 38 years old, healthy as an ox, fabulous lifestyle with good diet, exercise habits and low stress. So, what gives?

All evidence points to genetics. I have a strong family lineage of colon cancer, colitis and IBS, which I am learning all about right now, unfortunately. I am not yet officially diagnosed, by the way, but the colonoscopy results were pretty telling.

It’s 4 days total until my official diagnostic results are available, so my fiancé and I have had lots of time to think and swap stories with others. There seems to be so little attention on colons, and that part of the digestive system; people just don’t talk about it! They are afraid of and embarrassed by their colon/rectal region. Societally, we don’t talk about gas, bowel movements, discomfort, sounds, smells, frequency, etc, etc, you get the idea. It’s all taboo! Why! If more people discussed this incredibly valuable part of our anatomy, wouldn’t there be more education and therefore prevention of cancer and other ailments? YES!

At the beginning of our relationship, my boyfriend (now fiancé) and I were discrete about our colonic behaviors, like everyone else. Over time we just became more accepting and open about our digestion, yet still respectful of each others’ space. If one of us farts, we just open the window and just say, “Good onya, Honey! Get it out!”. And really, better out of ya than in ya, right? This openness and self-observation lead me to eventually get my colonoscopy exam (a whole 15 years earlier than medical recommendation), which turned up a malignant cancerous mass.

Here is an excerpt from an Oregonian article illustrating what makes our society colorectally shy:

“You don’t hear nearly as much about colon cancer as you do about breast cancer or lung cancer or prostate cancer,” he says. “Why? It’s all about the poop. People don’t want to talk about their butts. Have you ever seen a brown ribbon campaign?”

– Jay Lake, cancer survivor, blogger and science fiction writer

“Unfortunately (colon cancer) is a huge source of cancer morbidity, and it gets frightfully little press and is sort of underfunded. I’m not sure why. Maybe because it deals with bowel issues the culture is reticent to discuss. I certainly agree with Jay that there’s not the degree of cultural support, advocacy and marches like you see with breast cancer or prostate cancer.”

– Dr. Kevin Billingsley, the chief of the division of surgical oncology at OHSU 

So there you have it. My advice? Don’t be so afraid or secretive! It only encourages other people to be so, then where are we? A society in denial of a real health problem. All of us have cancer naturally occuring, and our bodies are fighting it off successfully all the time. But when our bodies get overwhelmed, the system breaks down, and the cancer cells get out of control.

Most of us will experience cancer ourselves in our lifetime. Remember, the colon is a PART of our BODY, everybody has one (‘cept for those who had theirs extracted), everybody has problems now and then, but we don’t necessarily know what NORMAL activity is and what’s not normal. I didn’t know that my problems were not normal. I just lived with the discomfort thinking it would naturally pass, as a phase. The same story I heard from my brother and my cousin (who recently had his colon removed from ulcerative colitis infection).

What could I fear? After all, I am young and healthy!”

We think humor needs to be injected into the topic of colon health to encourage people to pay attention to theirs.

THE BIG ‘C’

2/24/12 Friday PM

The colonoscopy turned up cancer, very definitively, no question. Dr. Lai said that two years ago it would have been a polyp, and he would have removed it then. But now it’s full-blown, and it’s compressing the space in my colon, sapping my nutrients. It could have been growing since before then. No symptoms until recently, no warning.  It is a 5 cm mass in the sigmoid colon. There is also a neighboring 1 cm polyp which was removed for biopsy.  I could see colored pictures of the mass just below my name on the report, just minutes after the procedure.

Dr. Lai sent me across the street right away to get a CT scan of my whole abdomen. This test will show generally if there were other occurrences of cancer. The results of the scan, blood & stool diagnostics will be explained during a follow-up appointment with Dr. Lai this coming Monday afternoon (3 more days away!).

I’m having trouble making reality out of this. I’m too young, too healthy! And I don’t feel sick!

When I finished the scan, I found Matt outside the office on the sidewalk talking on the phone. He was talking to his daughter Chloe. She lives close by, and suggested a visit from us. I said, of course, as I was feeling fine after all the exams.

Chloe was very reassuring that I would come through any treatment fine, and I would return to a healthy life. Matt is confident, too. He had already left a message with Chloe’s mom, Olivia, who was asleep on the other side of the world (OZ).

We returned home and Olivia called immediately when she got the message, and offered assistance: finding doctors, sharing info, emotional support, etc. Olivia had survived breast cancer in ‘93/’94, and has since thrived on building foundations, support resources and a hospital/retreat for cancer patients called ‘Gaia’ (located in Australia) for patients all over the world. Amazing woman! So, I feel honored to personally have Olivia’s support. Very sweet!!! She advised me that hard times would come, breakdowns, etc, and just go with them. Just let fly and feel the emotions. “Oh yes,” I’m thinking, “I know already, I’m in for a ride…”

I hate that Matt has to go through this again after going through it years ago with Olivia. I know he will be far better equipped now than during Olivia’s ordeal. Matt is devoted to my emotional needs and to making me better, whatever it takes.

I also hate that my cousin Aaron, ulcerative colitis sufferer, is worrying for my health after going through his colon removal trauma.

I also hate that my mom and dad are in Portland, 1000 miles away, worrying.

Oh, what does this mean? Why me? Why now? What caused it to start? What could I have done differently? No answers for me, I know. I can’t complain. There are so many other people going through the same thing as me and worse. So, it is what it is!

Incidentally, the colonoscopy and initial diagnosis were the same day that 2 years ago Matt went in for his planned hip reconstruction surgery. Feb. 23rd, an auspicious day, no?

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