PROGRESS REPORT

Remember in school when we got progress reports to show our parents how we are doing?

It’s time for a progress report!

All things considered, I can say that I am doing very well indeed. I wish I were closer to the end of my medical bill horror show, but alas, it won’t be finished by year’s end like I was hoping. Mostly the expected stuff I suppose; nobody wants to kiss off their money charged, but like I’m trying to make clear to the medical billing departments, “You can’t squeeze blood out of a turnip!”

It doesn’t help that the insurance company before the procedure was performed did not disclose to me that, “Oh, your hernia surgeon, medical team and procedure are all covered, *but* the hospital is not!” So, I owe a quarter of the bill on that procedure which *should* have been covered… argh! But I won’t bore you too much with the details.

Besides that…

…with a few minor modifications post-hernia, I am back to my old ways. The ‘modifications’ I am referring to are things like not using the torso for ANYTHING besides standing up straight. Don’t want to undo that new hernia mesh. Also not lifting anything. Sorry Matt, packing I can do, but moving boxes is up to you, Babe.

A follow-up blood test at my oncologist’s office gave a clean report, meaning I am still in remission and starting off on the right post-treatment track.

I had a bit of a horror the other night when I looked at my poor scarred belly, and noticed a new bump. Ohhhhh. That’s not good. Even Matt had to admit that it looked new and a little unusual. This is the paranoia I referred to in this post. Well, since that day, nothing has changed, fortunately. I go on wearing my “belly bra” and hoping that it won’t get worse, or that it was just angry that day and will go away.

plumbing_post_cancer

New Plumbing

Bowel habits are, well, different forever, but I will definitely grow into them. The list of inconveniences in order of ‘annoying’:

– stains in the panties!
– I don’t know whether gas means *just gas* or if something comes with it.
– I have to “go” soon after a meal… 2 or 3 times.
– prickly butt when I’m hiking (for some reason thorough wiping isn’t as effective as it once was). Matt suggests a toilet paper barrier.
– bladder infections: a new phenomenon to me! Arrgh! And dang if it doesn’t happen just before a long road trip, every time so far.

So, in regards to the new plumbing, there is nothing that I can’t live harmoniously with, and there is nothing to say that it won’t get better with time. Still the evidence shows that I have experienced life-long changes this year that the average Joe/Jane does not have, and now I am among an elite group of ‘special’ individuals who have to do laundry more often than average.

The rose-colored short story is: Life is good, and every day is a bonus!

POOP SACK

What to do with an old poop sack (ie. ostomy bag)

In the morning, I get out of bed and start a few early chores, putting away dried dishes, getting bananas for Matt & I, taking supplement pills… Usually, I have a 1/2 full ostomy bag dangling from my abdomen (see earlier post, Energetically Challenged).

This morning I came back to bed chuckling about a poop story I had to tell to Matt:

Years ago, I was hiking with my good friend Dan. It was a beautiful day at Oregon Coast’s Saddle Mountain, and we were just heading down hill from the summit when a dog (don’t ask me what kind, kind of medium-sized), came trotting merrily up the path toward us. As he got closer, Dan and I noticed that around its neck was a sack of its own poop. Neither of us said anything, but stared as it trotted by completely oblivious to us. I think we were both thinking, “Huh, that seems kind of cruel”. The next moment, we saw the dog’s owner hiking up the path toward us and as he passed, he said,

“Don’t tell him, he doesn’t know.”

Dan and I busted up laughing the entire way down the hill. And that’s what the feeling of my bag’s fullness reminds me of, that happy pooch trotting up the path to the summit.

Well, I don’t feel happy with a full bag, but I guess that’s because *I KNOW*.

Early on, I went through a lot of ostomy bags. There’s a bit of a learning curve to get the ‘appliance exchange’ just right, plus I had a complication which caused the bags to unstick prematurely and need frequent replacement. Matt was doing all the changes. Bless him. He insisted that he wanted to be the nurse. Right away, I began noticing empty ostomy bags laying out in the dirt, baking in the sun.

I’ve got an unusual guy.

…Matt? What are my old bags doing in the dirt, baking in the sun? (I’ve known Matt long enough, I already knew the answer). Explanation: The sun kills everything, so the UV rays will sterilize any residue in the bag, and then we’ll just throw it in the trash.

Still, after a week or two, seeing a garden of these sun-baking poop bags in the dirt made me smile over my Nurse Matt.

ENERGETICALLY CHALLENGED

Nearly one month post-op, how energetically challenged am I?

Things continue to improve with my energy and aches. I’m down to one rest time per day, depending on the activity level of the day. Lately we have been busy, which has been good exercise for my energy. Typically, after a couple of hours of activity, I get tired, achy and cranky. If I can nap for 30 minutes, then I’m fine! But I’ve been tested lately:

Hiking the Malibu HILLS

First, Matt and I have been taking short hikes in the hills. Malibu has HILLS. These hills were previously a real pleasure, always a relaxing, calming, thoughtful time to spend in nature. Currently, these hills are taunting to me. I can only look at the ground in front of my feet and exhaustively move myself forward and long for home. Ha! What a change!

Company

didj-jam

The boys. Matt is leading with didjeridoo out of the frame.

Matt coordinated a dear friend to come for a long over-due overnighter at the property. Sunday, Father’s Day, Ted was to come visit. Between the day plans were made with Ted and Sunday, we suddenly had a group of five outrageous guys: two “old Jews”, an Irishman, a Canadian and a son-of-a-Jew. Altogether a loud and delightfully quirky bunch. I swore off assisting too much with this party. As any party entertainer knows how much effort it is to have a party. Add to that, a party with no house to entertain in. I just knew it would flatten me by evening’s end. I had already done a short morning hike with Matt and a volunteer trip to the grocery store for some odds and ends.

The party arrived. This is where Matt excels, working the crowd, keeping everyone good and entertained all evening. Naturally, I liked everybody and enjoyed the banter, yet found myself during conversations wishing there was a stool for me nearby.

Problem child: the Bag

ileostomy_bag

example ileostomy bag

The sun was down, and the boys were thinking about beginning to start the barbie, and what do you know… My ileostomy bag separates from my skin, and I’m leaking intestinal contents. BAAAH! Nice timing! Holding my bag against my belly to contain contents, I signalled Matt (who was joyfully inebriated by now) to tell him that I needed to disappear for a while to get my new bag in place, and not to worry. He insists on helping me with this every time, so fine. My routine is to:

1) Empty bag into toilet
2) Strip from skin
3) Throw bag on shower floor
4) Step in shower and hose off…

The stoma will NOT STOP POOPING! Unbelievable. Every single time the bag comes off, the stoma celebrates its liberation. Poop, poop, poop. So finally I get out of the shower with a tissue over the stoma, lay down among my towels and all supplies, and wait for Matt to fashion the stoma hole in the adhesive patch and press it, not gently, onto my surgery site. He compassionately took this time out to do this for me, and then rested his head tenderly over my lap for a few moments after it was all done. Back to the party.

After dinner was done our Jew and Irishman friends went home. A good time was had by all! But, I was FINISHED, and could hardly see straight from fatigue. I did some cursory clean up, putting food away, then said good night to Ted and Matt. They agreed to clean the dishes to discourage any wild animals from poking about during the night. And then I was out.

Three hours later, Matt comes in. He and Ted had continued their rowdy-boy festivities (but I did hear them wash the dishes, yippee!). The next morning, I was thankful to have had only two beers early the night before and feel rested and whole! Matt’s Monday morning started out slowly and painfully, and could not account for how many beers he had imbibed! He tied one on!

Lesson: occasionally endure discomfort to allow your partner play-therapy.

Visiting the Daughter

Then, Matt’s daughter Chloe called. This was to be the day she flies to Australia with her fiance for an indefinite amount of time, and would we like to meet her in town to go shopping!

So, we saw Ted off and scrambled to get out the gate to meet Chloe in town. With Chloe we drove around town helping mark off her to-do list to prepare for the flight to Australia! After a full afternoon with Chloe, I still had to go to the pharmacy and the bank, which took an unimaginably long time before getting back home.

And Finally…

The following day, Tuesday, was another trip to town for a doctor appointment, grocery shopping and Matt’s business meeting. As usual, I started off charged, then quickly lost internal battery power. Now we finally have some days off! Matt and I have no place to be until Saturday, so until then, this is where you’ll find me!

A tentative surgery date is scheduled for Wednesday July 11, 8:00am. Until then, each day I will be less energetically challenged!

10 DAY COUNTDOWN + ALTERNATIVE TREATMENT

1 1/2 weeks to surgery day, and I’ve found a new alternative treatment

Tomorrow morning Matt & I meet with the surgeon who will be performing my procedure, Dr. Childs. I will be examined to see how effective the preparation treatments were (ie. how fried that MF is), discuss surgical prep, and then we’ll discuss all Matt’s and my questions, like when can I start drinking again, will they provide enough painkillers to share with Matt, and so on.

Also today, I met by phone with a naturopathic medical doctor recommended to me regarding a brand new alternative therapy. Credentials seem to be good, as do her associates and alliances, and she is very excited about this therapy. This is taken as oral capsules and is derived from capsaicin (the hot element of chili peppers) and green tea. Many questions by both Matt & I were all answered. It is purported to be a stand-alone treatment. So I’m back to researching and questioning what I’ve already decided! Does it ever end!!!! No. It does not. The field is continually moving forward. Here is another example, a TED Talk video which Matt & I stumbled on last week.

Wednesday I will attend a webinar about managing colorectal cancer symptoms and treatments. Then next Wednesday, May 23rd is D Day, I go under the knife.

I often think to myself: “Thank goodness for a good, loving partner to be with me on this journey.”

Being ultra-aware of the 10 day countdown, I’m upping my diet of green tea, pepper, fresh veggies, and exercise.

DON’T LET THE EGGS ESCAPE!

Every morning Matt wakes up and says hello to the eggs in my abdomen.

They’re “good eggs,” he says.

As long as they stay in there, they will ALWAYS be good eggs! As soon as they are let out, they will start to suck your blood, your energy, your money right away and for the rest of your life! Then they’re no longer good eggs, they’re kids!

good_and_bad_eggs

At one time we were all “good eggs”. AND THEN WE ESCAPED!

REST PERIOD

“It’s getting better all the time… better, better, better”

– The Beatles

Last week we had spotted some properties online in Ventura, CA that we wanted to look at more closely. Yesterday Matt & I drove out to meet our realtor, about a 45-minute drive from our home nest. By day 5 after completion of the chemo/radiation regimen, I thought it risky to sign on for a day of house hunting because of the fatigue and the bowel urgency, but I took the chance. I set up an understanding with the realtor and with Matt that we may only get to see “a few” houses, and my own understanding that this would be a long day.

Although I was a zombie by the end of the afternoon, I made it all the way through with little discomfort *insert pat on the back*. I had to rush along the tour of the last house, which NATURALLY was Matt’s favorite, because my attention span had expired, but hey, not my fault.

So in preparation for the day, and to mitigate any of my discomfort, Matt, the super genius he is, set this up just for me.

This get’s hooked to the tow ball of the car, and that way, wherever we are, we’re never far from a potty. What a guy!

BAA HAA HAA!!

CHEMO!

HI Y’ALL!

Are you feelin’ a little down lately? Do you need a pick-me-up?

Well, I got somethin’ for you. Listen up!

This will put a spring in your step and a sparkle in your eye!

It will make you sleep at night, and make you attractive to the opposite sex.

The word is out that this ALL NEW product is BETTER than the other LEADING BRANDS!

What are you waiting for! Try it now, and see what everyone is talking about!

CHEMO!

*this is a limited time offer, and does not make any representations, warranties or guarantees. if this product does not work for you, sorry, you’re out of luck.

CHEMO!

Chemo_Biohazard

HILARIOUS GIFT

Thanks Sarah Parks! This’ll make ’em laugh at the radiation lab!

Hey_Cancer

END OF THE ROAD CAFE

I love food and love to eat!

Matt & I worship the God of Good Eats at every meal, especially dinner when it is a creative, social time for us. It is also ultimately nutritious and nourishing. Several years now of refining our menu together has made us masters of every meal.

We work together very well, moving in concert around each other and the sink, refrigerator and stove. We look forward to dinner every morning when we wake up. When we shop for the week, we look forward to eventually eating whatever we bring home from the grocery store. We are serious foodies.

We call our home the “END OF THE ROAD CAFE” because we live at the end of a long road, and we love to eat and to feed people.

I know that at some point my love of food will be overtaken by horrible nausea from the radiation and chemo regimen, and who knows what else, so for now, I store up like a bear before hibernation.

Ugh is the word used to describe the energy sap. That, and I rather like the “Boneless Chicken” ref. Sleep was broken for the last two nights with bouts of diarrhea/gas, with episodes every 2 hours. Fatigued. Other than that, healthy appetite, good mood. Damn, I look skinny!

On this treatment regimen, I will need to up my calories, avoid roughage to avoid diarrhea, get more vitamin B6, Calcium, probiotics, electrolytes, potassuim and sodium, increase soluble fiber. And get this: MORE FATS AND OILS!! Joking?

It just seems so wrong that my life has been dedicated to nutritional eating, and now I am voluntarily putting poison in my mouth. I know, I know, it beats dying an early death, but seriously, there is a biohazard symbol on my bag of chemo pills!

Ok, salty, oily potatoes with mayo it is! Bring it!!

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.

%d bloggers like this: