The on-going, first-hand tale of a journey through medical oncology... and what happens after.

Saturday, March 22, 2008

Colonoscopy 102

The previous post (below this one in the blog) described the preparation for a colonoscopy. Here is my record of the experience itself. First thing was check-in, where they verified who I am and how I planned to pay for the procedure. I was made to read and sign the post-procedure instructions, and then indicate who would be awaiting my recovery and driving me home. This all felt routine and simple to me. Then we sat in the waiting room until my name was called.

A nurse came to get me within about five minutes, and we went back to a comfortable little room. On the way we stopped at a scale (180.2 lbs with clothes and shoes on). The nurse stepped out of the room as she asked me to change out of my clothes and into a standard hospital gown, leaving socks shoes and t-shirt on. (It is a sign of my experience that I knew to tie the back first before pulling the gown over my head.) Then she took the rest of my vital statistics are (height, blood pressure, temperature, etc.) and another nurse came in to prepare my IV line.

Moments later, we walked into the examination room and I climbed onto the exam table. I was quickly introduced to the exam nurses, and one of them attached four monitor patches to my chest and arm. Moments later my doctor arrived and we chatted a little while he gets into his gown, and then he asks me to turn onto my left side. In this position, I could see the video monitor that he would use during the procedure.

Then I was being helped into the van by my wife, who said that everything looks normal.

Then I was in my recliner, waking up to find a note from her telling me that food is on the stove. I ate some bean soup, and fell asleep again. And then I was hungry again. No bloating, no pain, no real memory of anything after turning on my side on the exam table.

Did I drool? Did I say anything funny? Who knows. But the procedure was completely uneventful and straightforward. Every exam should be so simple... and the results so positive.

Colonoscopy 101 (warning - long post!)

These procedures are now a regular part of my life. And if you have any family history of colon "stuff" (polyps, tumors (benign or malignant), etc.), you should get one as early as your 40s. Please do so. It is so much easier than the alternative of finding out later when there are chemo- and radiation therapies to endure. That said, here is how it goes [my commentary will be in square brackets].

Purchase two (2) bottles of 1.5 oz (45 ml) Fleet Phospho-Soda at any pharmacy, in the laxative section. [This is easy, but be sure to get the 1.5 oz. bottles and not the enema squirt bottles. Each 1.5 oz. bottle cost about $4 US.]

One week before procedure: Do not take IRON, vitamins, or herbal supplements; try to avoid food with seeds (flax seed, popcorn, nuts, berries, etc.); take your usual medications UNLESS stated by your physician (aspirin and Tylenol are OK); EXCEPTION: Ask for special instructions if you take major blood thinners such as Coumadin, Warfarin, Plavix, or Aggrenox or if you take insulin or other diabetic medications. [Apparently, these things affect how your colon behaves or its interior lining - you don't want any micro-tears from sharp seeds, or funny colors from supplements when they inflate your colon with an inert gas prior to the camera look-see!]

Three days before procedure: Stop taking fiber supplements (Metamucil, Citrucel, etc.) [You definitely want the laxative to clean you out without fiber supplements working to stop you up.]

Two days before procedure: Eat lightly (chicken, turkey, fish and soups); avoid red meat and fatty foods; NO SOLID FOOD AFTER 5:00pm. At 5:00 pm begin clear liquid diet (water, coffee, tea (NO milk or cream), clear fruit juices (apple, cranberry), soda pop, Gatorade, bouillon, popsicles, Jell-o (avoid the color RED); avoid alcohol. My doctor recommends drinking at least one liter of Gatorade today and tomorrow. [After my experiences with a lower abdominal resection and the partial bowel obstruction, this was not such an ordeal. And it is only for 36 hours or so... you can do this.]

One day before procedure: Continue clear liquid diet; NO SOLID FOOD; it's important to drink at least an 8 ounce glass of clear liquid each hour you are awake. 9:00am - Pour 1.5 ounce bottle of Fleet Phospho-Soda into a 4-8 ounce glass of cool clear liquid (ginger ale or 7-Up is recommended). Drink and follow with an 8 ounce glass of water. ** Stay near your restroom from this point on. ** PHOSPHO-SODA doses must be 10 hours apart. 7:00pm - Repeat dosage of Phospho-Soda as previously described. [This stuff is vile. It is the most distasteful part of the ordeal - for me even more distasteful than the evacuation that it causes! My advice: refrigerate the Phospho-soda, add as little "cool clear liquid" as you can, and drink it quickly. Have the full glass of water ready to rinse the taste out of your mouth. And concerning the proximity to a bathroom - this is an imperative! Also, it's a good idea to heed the suggestion about Vaseline/Desitin described below.]

Day of procedure: Continue clear liquid diet up until one hour before your exam, then nothing by mouth until after the procedure. Wear loose comfortable clothing. Please keep all valuables at home; be sure to bring your insurance card. [You will only partially remember stuff after you are in the recovery room. The comfortable clothing is to make getting dressed easier afterwards (you are wearing a gown, t-shirt and socks during the procedure).]
IV sedation will be given to you for this procedure. You MUST bring a driver with you to wait in the waiting area during and after the procedure so that the doctor has someone to talk to regarding your release instructions. You CANNOT take a bus or walk home. DO NOT work, operate heavy machinery, or drive until the following day. [Absolutely good advice. I do not remember getting dressed, getting into our car, or arriving at home. I remember waking up in my recliner. Scary.]

What if I have major medical changes between the time I schedule my procedure and the procedure date?
Please notify our nursing staff as soon as possible so we can make any adjustments to new medications or possibly change your preparation routine. If you are having heart issues you may need to delay your scheduled procedure until your cardiologist feels it is safe.

What if I accidentally take my vitamins within 7 days of my procedure?
If you take potassium or folic acid with your prescription medications, please continue. If you accidentally take multi-vitamins, just do not take any more. If you are taking an IRON pill, you may need to reschedule your procedure because it will leave black tar on your colon wall.


What do you mean by clear liquids?
If you put a liquid in a clear glass and hold it up to the light, you should be able to see a newspaper through it. It cannot have any solid in it whatsoever.

After I take my first PHOSPHO-SODA preparation, I begin to have clear bowel movements. Do I still need to take the second dose?
Yes. You still need to take the second dose to ensure proper cleansing of your colon for the best visibility possible.

What if I can't find anyone to drive me home after my procedure?
By law, we cannot release you without a ride home. You cannot ride a bus or walk, but you can take a taxi or medical transport if you absolutely cannot find someone to give you a ride. Our doctors prefer that you have someone in the waiting area during and after the procedure so they have someone to speak with regarding your release instructions and if there are any complications. The sedation used during the procedure can cause slight amnesia so you may not remember anything.

You should coat your rectum with Vaseline or Desitin before you start drinking your laxative to help with irritation. Reapply after every bowel movement. [Good advice - I wish I had heeded it!]

Our doctors highly recommend drinking Gatorade or Powerade the day before your laxative preparation and during the preparation to prevent dehydration. [Yes. You will be amazed at the volume of liquid that Phospho-Soda causes you to release. Totally amazed.]

Restriction of activity - the intravenous sedation you have received will slow your reflexes and affect your judgment.
1. Do not drive a car, operate equipment, or work around sharp objects until the day after the procedure
2. Do not make important decisions or sign important papers for at least 24 hours.
3. Do not drink alcoholic beverages for 24 hours.
4. The day following your procedure: resume full activity.

Diet - you may eat and drink normally one hour after the procedure.
Treatment for common effects - bloating, excess gas, or mild abdominal discomfort: rest, eat lightly, and use a heating pad.

NOTIFY DOCTOR - If you have any of the following:
1. Fever or chills
2. Severe abdominal pain or new chest pain
3. Spitting up or vomiting blood
4. Passing blood by rectum (2-3 tablespoons is OK)
5. If IV site becomes infected or is painful

I received a nice little summary and a copy of the pictures taken of my insides. Interesting. I hope this is useful information for all of you out there in blog-land!

Tuesday, March 18, 2008

Walking a little more lightly

When I was a younger man, say in my late teens (watch the snickers out there!), I would revel in the out of doors. In my fading memory, I went hiking or climbing every other weekend - first with the Boy Scouts and then with friends in college. Summers were a special time, when we could plan and then execute trips of 50 miles or more throughout the Washington Cascades and Olympics, and even into the Canadian Rockies. There were meals to invent, package, and dole out among the group. There was trail planning, with an eye towards appropriate distances per day and campgrounds. And, inevitably, there were the blistered feet, the feeling of pack straps literally cutting into shoulders, and the sweat of the trail. Of course, these drawbacks were more than counterbalanced by the exhilaration of accomplishment at the end of each day, the warm camaraderie found while singing old songs around a campfire late into the evening, the freedom from the noises of the city and its constant humming energy, and the chance to be outdoors.

One of my favorite moments during a day's hike occurs right when we arrive at the selected campsite. I would stop, look around for a moment to get my bearings and decide on a tent location, then shrug off my backpack and unlace my boots. Then, for the next few moments walking around barefoot, I felt like I was floating. The weight of a tent, sleeping bag, cooking utensils, stove, clothing, etc. quickly adds up, and once you remove that burden your legs can tell. You feel like you are walking on air.

Today I feel just a little lighter on my metaphorical feet. After a mere twelve, uncomfortably toxic months, I got a clean bill from the same gastroenterologist that shined a light where light rarely shines at the beginning of this cancerous adventure. My second annual colonoscopy was completely clear. No additional blebs, no unusual colors, no bumps, no divots - just your basic healthy colon. The procedure summary (like my colon) was short and to the point: "Evidence of prior intervention in the colon, otherwise normal colon." This is almost as good as seeing the word "unremarkable" on a radiologist's report. And his recommendations? "Colonoscopy recommended in 2 years, patient will be sent a reminder letter - resume regular diet as tolerated."

Ever felt like you could walk on air? Yup, me too.

Monday, March 10, 2008

From the mouths of babes...

I am sure you all have (or have heard) stories of kids saying the wildest things - profound observations of the reality they see, or naked assessments of those realities in the words they have heard their peers and family members use. Some of these child-remarks are so poignant as to bring you up short, stopping you in your proverbial tracks (physically and emotionally), and some are so funny that you nearly choke with suppressed glee. I love to hear their innocent words - they challenge my world-view in ways that adult-speak cannot.

Cancer. There, I said it. It alters perceptions, it alters expectations, it can suck the stuff of living out of a family, a neighborhood, a small person's world. You are probably tired of my repetitive focus on this word. We who share a path with children will go to great lengths to care for their views of cancer and shield them from too much exposure to the potentialities of a cancer diagnosis. I cannot say how anyone should (or shouldn't?) broach this topic with children, but I have a couple of ideas to share about a recent experience in CancerWorld-Ed. Maybe there is an insight here that you might find useful...

(1) I felt lucky that some dear friends had (unfortunately) just gone through a similar journey with cancer, that that journey was ultimately positive, that they were so open with us about their struggles and successes, and that my daughter had a chance to support her friend as she went through the same thing that she was now experiencing. But I am so sorry that this had to happen to them.

(2) I was so heartened by her ability to see the cancer treatments as something separate from Daddy, that she could accept my fatigue, frustration and shortness as symptoms of those treatments, and that she was (and remains) so brave in the face of an unexpected and unpredictable change to her world. She and my wife are my heroes, and I am sure that I didn't tell them that frequently enough.

(3) Just the other day through a remarkable after-school conversation, I was surprised and somewhat saddened to learn that she had the idea that cancer was communicable - that she thought she might "catch" cancer from me. This bolt from the blue was so surprising to me, and my initial stunned response - that we sure can learn good stuff from books and in school - seems pretty lame. She learned this by reading from a book, at school, in the third grade. This is a good thing to be encouraged to do (find out information from outside resources). But I am ashamed to admit that we never considered her child-like understanding of illnesses as we adults struggled to deal with that new reality in adult-terms. To my recollection and great relief, she NEVER shied away from hugging me, snuggling together to read books, holding my hand, and giving (and receiving) kisses goodnight. I am so sorry, but so proud.

I know that this is a little indulgent and off-topic, but I believe that the impact of a cancer diagnosis on the mental state of the spouse and close family receives too little attention after a cancer diagnosis. I am a lucky guy to have had the amazing and unconditional support of my wife, family, and close friends. But I am troubled that her concerns about a future quality-of-life-gone-all-to-hell have not been articulated, appreciated, and addressed. I can only say that we need to be raise awareness of the needs of cancer families - and want to thank all the friends that appeared from nowhere to alleviate the daily stress of feeding us, of distracting us, of supporting us while we wrestled with the Beast. Listen to each other... and especially to the children.

Saturday, March 1, 2008

Looking into the flames

For as long as I can remember, I have had a certain fascination with fire and water. As a young Boy Scout, I used to think that these juxtaposed interests were enormously entertaining - for hours I could throw rocks into water (any body of water would do) or play with fire. I have been told that one of my favorite activities as a very young boy was to go to the base of the newly-built Interstate 5 Bridge over the Montlake Cut to throw gravel into the water. No doubt some poor city employee had to deal with my enthusiastic rock tossing...

But fire had and continues to have an uncanny ability to draw my attention. As a scout, I prided myself on my ability to quickly and safely build a campfire. To this day, I still feel practiced at that craft. But the building is but the beginning. I can stare into a fire's magical flames for hours (or at least until I need to poke it and add fuel). The flames dance, shifting color and size... the wood glows different shades of orange, red and yellow intertwined. Complex carbon chains dissolving into oxygenated gases and ash, releasing the sun's bound energy into a vastly cooler world. As a chemo-patient, I treasured the privileged position I was allowed to assume in a close friend's living room next to their fireplace - seated in my portable recliner, just to the right side of the center of the room, wrapped in blankets and thick sweaters - while love and support swirled around me and my family, and a fire crackled and glowed. As a post-chemo cancer survivor, I still find that I am drawn to that fire, warming my heart as well as my neuropathetic hands and feet.

And of course, I find it impossible to resist briefly writing something about the metaphorical aspects of flames and facing (and then living with) cancer. Where to begin, though... A life uncontrollably consumed with anxiety, with chemicals, and with a new set of sensitivities? The kindling of new ideas and reoriented priorities? The need for sustained oxygen, for a changed fuel supply, for a different source of energy? Wondering, wondering, wondering... Trying to plumb a future that does not feel completely mine. My cancer diagnosis makes me regularly look at the fire in my life to see what's there, and why it's there, and if it's the fire that I want. So far, I see more questions than answers in the flames of my life, but I am so thankful for the chance to look and ponder.

I may have mentioned this before, but I do not know how I might handle a cancer (or any other dread disease) diagnosis in my wife. I do not know how I could handle the calm and gentle discussions that would need to occur with our daughter. I am a capable adult, and a good parent, and a competent homeowner... but I could not alone raise my daughter and keep my house at even half the level that we do together. Somedays I wish I could see this cancer-nightmare through her eyes - to understand how she sees me and cancer - but I cannot imagine her with cancer and me as the sole parent-companion-caregiver. I am too impatient, too needing to be in control, too hard on myself - and that rubs off on everyone nearby.

The flame of our lives requires constant maintenance. Too hot and it may burn out, too cool and it may extinguish itself. Not enough fuel/energy/oxygen - we all need to concern ourselves with maintaining our flames. And our fireplace - the loving support of friends and family - is as important as the individual flames that mingle there. Such platitude, aphorism, euphemism, and metaphor in so few paragraphs - what a mixed up mess of thinking. But there it is. Each day, each moment, we each look into the flames of our lives, and see what we see.