I KICKED CANCER’S ASS

Kicking cancer’s ass

Wow, I’m still swimming in glee after the visit with my medical oncologist, Dr. Fischer! The news that my cancer is in remission, and there is no statistical benefit to follow-up with chemo, leaves Matt & I emotional and ecstatic!

Whew! That was big news. Matt & I both expected the doctor to say, “Here are your statistics for survival. Now you get to choose whether or not to go ahead with more chemo!”. I wasn’t looking forward to that decision, and we were both feeling a little anxious about this meeting. In spite of the potential life-saving benefits, the possible medication side effects of sickness, hair loss, neuropathy (numbing and tingling) by months of harsh medications.

My case was relatively clear cut.

The tumor was a standard stage II adenocarcinoma. The radio-chemo treatments successfully shrank the tumor, and Dr. Childs skillfully removed it and surrounding lymph nodes. The pathology tests were very extensive, and all came back in the low-risk category. The most important tests for my layman’s knowledge are:

Depth of Invasion – referring to how far the tumor grew through the rectal wall. Mine penetrated only the innermost layer, but did not emerge on the outside of the wall where blood vessels and lymph nodes are likely to pick up and spread it to other organs.

Lymph nodes – 21 of my nodes were removed and tested (standard removal is approximately 12 nodes), and all tested negative for cancerous cells.

The doctor also said, testing revealed that this was not a hereditary condition, known as Lynch Syndrome, that it was a freak occurrence… Not so comforting to me because there is still a question mark in my mind about what the heck started the tumor. I already thought I was doing the right things. But I guess I’ve got the rest of my LIFE to ponder that!
So I am proceeding with the planned course of surgery coming up in a few weeks (July 11), plus follow-up quarterly blood tests for the first year, every 5-6 months for years 2-3, then once per year through year 5. If, by year 5, test results consistently come back normal, then cancer recurrence is unlikely.

Wooooo! Matt & I did good!

And I must not forget to credit you, my friends, for the support, prayers and chants sent my way since the diagnosis. I believe a network of community support is the framework for successful recovery. Take care of yourselves and doing the right things for your own cancer prevention. Then we can all grow old together and party till we drop!

Now for the final recovery and the financial landslide… Right now I have a horrendously high out-of-pocket fee to pay plus extras insurance doesn’t cover. My days are filled with long hours of paperwork and research on financial assistance for patients. Wish me luck!

Thanks again for helping me kick cancer’s ass, and for your powerful, strong-arm prayers! They worked!

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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!

14 DAY – POST OP UPDATE

Day 14 Post-Op, 4th day home.

Well, it’s Wednesday today, I came home from the hospital on Saturday, so it’s 4 days now that I’ve been back home. Although I am still not doing much, today is the first day I feel like a whole human being! I knew as soon as I woke up, because I felt crabby! Not because of any one legitimate thing, I just felt crabby. Then I realized that it was *precisely* because my body was feeling better that I could feel truly crabby rather than sick, or achy, or pitifully tired. Just run-of-the-mill crabby. That thought made me happy.

Doctor visit

The follow-up appointment with Dr. Childs went smooth as silk. Although I was fatigued as hell from the drive in to Santa Monica, and was holding back some aches and pains, she said everything looked healthy and was well on track to recovery. I asked about the back ache I had been suffering from since the first surgery; that was most likely due to how much time I spent on my back while in the hospital. I asked about a perpetual yawn feeling in my ears; that sounded like some kind of congestion. So nothing really unusual about the recent surgery and recovery to report. I’ll see her again in 2 weeks.

Out with the old…

Matt changed my illiostomy bag this morning. It was starting to stink, so it had to go. I had a sample from the hospital (my new shipment hasn’t arrived yet), so thank goodness for the back-up. The bags should last up to a week, just being emptied and flushed out occasionally. Each of these can easily be done in the toilet and in the shower, respectively.

I stood in the shower pulling away the stickum patch from my skin, cleaning, then letting the water run over my stoma. It’s really a nice looking stoma. I should enter a stoma beauty contest, at least my tummy looks nicer than some other stoma patients’ tummies.

Matt had prepared the space in the bedroom where he could work. I laid on the “operating table” (bed covered in sheets and towels). He analyzed my stoma, then disappeared for a few minutes, and had the new bag edited with the hole cut for my stoma to fit through. He turned on all the lights in the room, donned his glasses and went to work. We had a handy DVD from Hollister (the ostomy manufacturer) playing in the background. Matt peeled the backing from the sticky patch and I oriented the bag, then on it went! Just like that, and it was fresh and clean. Then “Phbpbpbpbp!” Excellent timing, the stoma had just started spitting again.

It’s not like I have muscles to hold in sounds and stools like a rectum does. So when I have to “go”, I “go”, irrespective of who’s around, where I am or what I have to say about it.

So when the stoma talks, no one’s around but Matt & I, and we just chuckle to each other because we both know the monumental journey I just went through to get to a sputtering stoma.

DAY 10 – HAPPY DISCHARGE DAY!

It’s Discharge Day!pain_scale_faces

Today is the day Matt & I make a break for freedom!

No tubes

No tags

No required measurements

No cancer

A happy stoma

It’s all about peace & quiet of the mountain in Malibu now. Back to routine, back to healing, back to cooking and eating and freedom.

We’ll be back here at the hospital (I’m sure they’ll have a name plaque on the wall for us by then, ha ha) in July for the ‘reversal’ where I will have the intestines reattached and everything put back together. Then we test the new J-pouch system the Dr. Childs created for me. This procedure will call for a few days in the hospital (trying not to think of Gilligan’s 3 hour tour).

Both Matt & I are in good spirits. We celebrated the final evening watching episodes of Portlandia and Jon Stewart, eating and drinking merrily and BS-ing with the nurses. They’ll miss us when we’re gone. For a few minutes.

cancer_pre_surgery

Before

eating_post_second_surgery

After

Matt is so impressed by my new stoma he wants to make a video and put it on YouTube. He’s a funny bastard, people.

If he does, we’ll post it here first!

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