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Yes, it's been a while.

I had my follow-up CT scan and colonoscopy on 8/8. CT scan was fine. And according to my oncologist, the colonoscopy was too. However, I was concerned. The result?

The polyp removed from your ascending colon (a site of prior polyp removal) was a sessile serrated adenoma. Sessile serrated adenoma is benign, but may have the potential to become cancerous over time. For this reason, we recommend more frequent colonoscopies than would be recommended if you did not have this polyp. In your case I would like to reinspect this site in 6 months to make sure the polyp is gone.

The polyp was in the same location as one that was removed with my first colonoscopy (where I have a tattoo!). The oncologist said that sometimes they keep reappearing in the same area and after a number of times, they remove that section of the colon. So.... kind of a sword of Damocles hanging over my head. I don't think about it all of the time, but you never really get over the idea that the cancer is waiting to return. People ask how I'm doing and what they want to hear is that I am free of cancer and well. Technically, that won't happen until the five year mark. But then, what?

Until then, I'll enjoy life and revel in the beauty of every day-ness. 

Thanks for listening.

 

Remembering Misa

I first met Misa at an American Cancer Society fundraiser where Amgen sponsored a table. At one point in the evening, they ask any one who is currently being treated for cancer to stand up. David and Misa stood and looked at each other, a look of recognition and understanding. I knew their cancers bonded them in a way that I wouldn't fully comprehend until I was later diagnosed with cancer.

Misa lost her battle to breast cancer on Saturday, June 7th. She was the epitome of grace, kindness, joy and gentleness. She would always find happiness in things, even when undergoing difficult and painful treatments. The treatments I underwent were nothing like she endured. I've learned to find joy in every day moments from Misa.

The earth has lost a beautiful spirit.

Are you ever free from cancer?

From the time she got her initial diagnosis in 2001 until her death in 2006, the same year her book was published, Ms. Engelberg resisted pressure to become “someone nobler and more courageous than I was.”

It is a big deal!

“Colorectal screening is an important public health intervention that has prevented half a million people from the trauma of cancer,” said Dr. Yu. “I think that’s a big deal.”

View from the other side of the examinating table

Interesting article in the NYTimes on an oncologists experience of patient's cancer.

Obituary

David had me read this obituary for Robert Douglas Peth. He sounds like a great person, someone I'd enjoy knowing. It's a long, but worth while read. But in case you're short of time, here's how it ends, "In lieu of flowers, Bob is shouting at you: GET A COLONOSCOPY."

Well said, Bob. Thank you.

Wow, haven't blogged since March!

Yes, I have been busy!

I've been back to work for three weeks now. Playing tennis. And experiencing the kind of energy I must have had before I started treatment. It's true what they say, you never know what you've had until you've lost it. I don't think that I let myself acknowledge just how tired I was when going through treatment. Now that it's done, I feel like a new person!

Taking care to keep up good habits was really important, eating healthy foods, keeping up with exercise even if it was just walking, and having incredible support from David, family and friends!

I found this article in the NYTimes very inspiring! Battling cancer takes all of the strength you have, but in the end, you come out stronger.

Did you know...

...that March is colorectal cancer awareness month? Neither did I. Guess we were all caught up in our St. Patrick's Day celebrations.

With that in mind (no, not weird bearded guys) there is a promising new test for colorectal cancer that is non-invasive and doesn't require any prep work (the worst part of having a colonoscopy). Here is a video about the test.

If the insurance companies decide to cover this, it would encourage a lot more people to get tested and hopefully avoid what I have gone through!

Staying healthy through diet and testing

CNN recently reported a BBC article that showed colon cancer rates are down since the 1980s. Main reason - people are getting tested. Colon cancer has been the number one cause of cancer deaths, and with regular testing, is preventable. So, GO GET YOUR TEST!

WSJ had an interesting article on doctors, chefs and nutritionists teaming up to learn how diet and health can support each other. Of particular interest to me, was the story of New York chef, Seamus Mullen, who has written a cook book called Hero Food. Through diet he was able to reverse the effects of rheumatoid arthritis. In some states, doctors are writing prescriptions for fruits and vegetables that people can get filled at farmers markets. It's a farm to pharma idea.

So, exercise, eat a Mediterranean diet and get your tests done!

From WSJ

Yes, there are stupid questions

Great article in the NYTimes, about a young man who asks what he did to get cancer. When I was first diagnosed, I blamed myself for not getting a colonoscopy sooner (GO GET ONE NOW!). And then I'd see a toddler with a chemo port and wondered if that child blamed herself. In the end, "Why me?" or "What did I do?" are stupid questions for which there may not be answers. As the fellow in this article realizes, don't ask why, move on to the next phase of your life - living.

Good advise

I saw this article on CNN about being blindsided by cancer. I felt there was some good advise, some which I did, some which I did not. I didn't shop around for doctors - when I first met with the team that would be treating me, I was overwhelmed with the scope of treatment and the idea of going through this with additional doctors was beyond my comprehension. Also, since I was at SCCA, the treatment would have been standard across the board.

Since the WHO has recently released a report that the incidence of cancer is becoming a global disaster, we all need to prepare for the idea that cancer will be entering our lives. Here is a link on things you can do to prevent getting cancer. Speaking of which, get your colonoscopy test done! Here is a great graphic from SCCA!

Thoughts

One thing having a life threatening condition can do is to make you think - all sorts of things, good and bad.

I honestly don't think about cancer, per se, my focus was mostly getting through the treatments and maintaining as close to a normal life as I could. I think sometimes I was fooling myself. I had a visit from a friend yesterday who commented on how good I look, that my color is so much better than when I was on chemo. I was kind of surprised, did I really look that different then, than now? I asked David and he confirmed that I did.

Maybe my fooling myself was a good thing, who knows. I recently saw this article in the NYTimes and found it interesting how cancer can put all sorts of thoughts into your head, but there are tools for dismantling the anxiety.

My sister recently sent me the book, A Breast Cancer Alphabet. I've just started to read it but it reinforces the notion that no matter what kind of cancer you get, you join a group of people who understand what you are facing, inside and outside of yourself.

The kindness of my friends

I've received many wishes for my recovery in the forms of emails and cards. I appreciate the thoughts that everyone sends my way for a speedy recovery.

One morning I got a call from friends that there was something on our doorstep. We found a beautiful wooden basket with all sorts of goodies - matzo ball soup, meatloaf and glaze, biscotti and daffodils (I call them Daveydils because David likes them). Fumiko made the best matzo ball soup! The broth was flavorful and the matzo balls light. Actually, everything was fantastic and really appreciated.

Then one day I received a bright bouquet from my USTA tennis team. I miss seeing everyone at our weekly practices and look forward to joining them again in a few weeks.

Unfortunately, this is what the cats do to flowers!

My friend Michelle was smart in bringing me a balloon with the image of a flower on it. The cats didn't eat it, but it became a kitty toy as they jumped for the ribbon and then walked around with the balloon trailing behind them. Everything is a potential toy to kitties!

Stapleless in Seattle

I got my staples removed yesterday - all six of them (nothing compared to the 43 staples David had after his retroperitoneal lymph node dissection). Nice to get rid of those bristly things! Now I have a nice row of steri-strips like a row of piano keys covering the incision.

Can I tell you how much I like nurses? They always have great advise. I asked about help controlling my irregularity and she told me it would take a month to get everything back to normal. Tomorrow is two weeks since the operation so I have two more weeks to go. Keeping on the low residue diet is important as well as doing Kegel exercises to get the strength back into those muscles. I can use Desitin to soothe soreness and I should wear a compression garment (Spanx) to help move the fluids that have accumulated around the incision.

I've also started walking on the treadmill since getting too far from a bathroom right now is not a good idea. Once things are back to normal some of my friends have doggies who would love to accompany us on a walk. Can't wait!

How is it possible?

I was weighed shortly before being released from the hospital, and I gained 6 pounds!

Here is what my diet has been since last Wednesday

Wednesday - clear fluids all day

Thursday - surgery and ice chips only

Friday - clear liquids all day

Saturday -  clear liquids in the morning, half a turkey/ham sandwich, then applesauce, rice, mashed potatoes and a banana

Sunday - nothing in the morning due to nausea, chicken noodle soup for dinner

Monday - half an order of tough blueberry pancakes and orange juice before coming home

They must have really pumped me up with fluids!

Heading home today!

Yesterday was a rough day. After gradually getting better each day, the transition from epidural and IV pain relief to oral meds set me back. I started to develop stomach cramps which lead to a few episodes of nausea. The pain relievers and anti-nausea meds knocked me out and I went from being alert and active to sleeping all day. I had no appetite or energy. It was decided that it would be best if I stayed another night until things stabilized. I was able to get up and shower, as well as, eat a little something for dinner that evening.

I have a whole list of medications to take but best of all, I will not have to give myself shots of Lovenox!  That would have entailed a self administered shot in my stomach for twenty-eight days.

Today, I didn't have any more nausea attacks and feel more alive, so after going through all of the discharge procedures, I'll be out of here and home with David and the kitties.

Had great care when I was here. Here is a view out of the window of my room. Not a great view but I was able to see the morning star (Venus) rise if it was clear.

Got some beautiful flowers from my Colorado family.

Very spring-ish.


Upon getting home I crawled into bed with Daphne on my chest and had a nice long nap!

What's for dinner

Still having control issues with my newly awakened digestive system, so for dinner I'm having a banana, some rice, mashed potatoes and apple sauce. Sounds delicious, right?

But, if I don't get things under control, I might have to stay another day. This could be my diet for the next week or so.

Who wants to join me?

How difficile is it?

First they threaten to put the catheter back in if I don't pee, then when all I produce is diarrhea, they need to wear protective gowns and test for C. difficile.

It's bad enough that the first BM I have in months is all over myself in bed. I found out the meaning of a line in the movie, The Bucket List, where Jack Nicholson says to never trust a fart. Indeed.

And, to top it off, I'm having my first experience with adult diapers. It only gets better.

Eulogy for Igor

My surgery yesterday went well.  David was with me off and on throughout the day/night and my friend Michelle visited me last night. I don't remember anything about the surgery, but the first thing I did in recovery was to feel my stomach. Igor (my stoma) was gone and good riddance! No more getting up in the middle of the night because I sprang a leak. No more kneeling in front of the toilet to empty the bag. No more going to another floor at work because the only stall taken was the handicap. No more taping myself up with plastic wrap before I shower. No more gurgling sounds after I eat. No more slushing around when I play tennis or walk. No more wearing two pairs of underwear (don't ask).

Doctor was pleased and the staff taking care of me are happy with my progress. I'm now on clear liquids as opposed to ice chips. Moving is painful when I engage my core muscles, which you use all of the time.

Here's a picture of me post-surgery. Happy camper, indeed!

Count down

So, the flex sig test I had last Friday did not go well. The other two times I had had this test it was uncomfortable but not painful. Normally I am able to administer the pre-test enema myself, rather than having the nurse do it. So after a painful attempt that included some bleeding, I got what David called concierge service and the nurse completed the procedure. The test was very painful, I found out, because the radiation had damaged the tissues. I was probably told this by the radiologist, but that was gobs of information overload long ago. The pain is something I will experience for the rest of my life.

Now, it's the night before my surgery. I've been on a clear liquid diet all day and feeling grumpy and hungry. I got lots of hugs from coworkers and my tennis team (Yes, I played tonight. Better to keep my mind off of my hunger!) I have nervous energy and am running around putting things together.

We show up at 5:45 AM. Usually you end up being prepped for at least 2 hours. The surgery should be just under an hour and then I will be rid of Igor (a coworker said I should name the stoma). I hope they at least let me have some clear liquids tomorrow night. If I need to show that my system is working, I'll need something for it to work on, my own Mr. Hanky!

Lucky me, my first one!

Barium enema, that is.

Never had having this test done, I was apprehensive. It wasn't as bad as I expected but still not pleasant. I feel like I was violated, and after leaving felt like I had to be near "the necessary", as my mom calls it.

The nurse said I was lucky since I have an ileostomy. Really? Well, it meant I had less prep to do before the test which would have meant a clear liquid diet for a day or more. I guess there's always something to be thankful for.

Next up? On Friday a flex sig. No prep for that besides a pre-procedure enema. Oh the joys I am experiencing. Then I meet with the surgeon to go over my upcoming surgery on 2/13.

My sister has been telling her friends that I'm getting my asshole back for Valentine's Day. One of them asked, "Does her husband travel a lot"?

Any way, the test results were good (I'm not leaking) and I thought of pleasant things while undergoing it to keep my mind off what was happening.

Like kittens.

Or the Seahawks win!!! Yeah!

My non-NSA surveillance plan

I met last week with my medical oncologist for my surveillance plan after surgery.

For one to two years, there are blood tests and an office visit every three months. One of the things they are looking for in the blood test is the level of CEA. I will also have yearly CT scans and colonoscopies. Then the blood test/office visits drop off to every 6 months for the next couple of years, then yearly.

The oncologist is positive that my cancer won't return. There is, of course, that chance which I'll face before every test. A co-worker who's husband had cancer called it scan-xiety, the anxiety you feel about the outcome before each test.

 I will just have to keep a positive attitude and take care of myself, continuing to exercise and pile on the veggies and fruit. Speaking of which, it's sunny out now and I'm going for a walk. Afterwards, I'll have one of the honeybell oranges my mom sent us for Christmas.

Last day of the year, last chemo infusion!

I celebrated the new year by having my last chemo infusion! On January 2nd, my little buddy the pump was disconnected. However, the last infusion was not going to let me off easy. I felt nauseous the next Monday and Tuesday night the stomach cramps returned, but not as intense as before and the violent nausea did not, thankfully, materialize.

So the next steps are setting up a monitoring schedule with my oncologist (CT scans every 3 months for 1-2 years, colonoscopies every 6 months...) and my FINAL surgery on 2/13! Getting my normal bodily functions back will be the best Valentine's Day present I've ever had! I am looking forward to getting through the surgery and recovery. What seemed like an insurmountable journey before at the beginning is now snowballing to the end. And with it the one thing I haven't really faced. My cancer. Before it was an abstract idea, not really real to me. What was real was the treatments and getting through them. Now that I'm nearing the end, I have to face the question of will, when, if ever; my cancer will return. The follow up schedule will be a constant reminder that what I have survived has a small but real possibility of returning. I will go forward with the assumption that the cancer will not return. As my oncologist told me, "My aim is to only do this once." SCCA has a better than average record of cancer survival. For now, I'll put my trust and faith in the people who took care of me and my friends and family that supported me.

We have much to go together in the future! Thank you.

P.S. This blog will eventually be winding down. I am now in the process of starting a food related blog which I know many of you will enjoy reading. I'll start to share it with you soon!

Dorothy