Newsworthy

The other day NBC News ran a story about Colontown, the Facebook support community that I belong to. It's a quick video that specifically highlights the clinical trial neighborhood and how it can help patients and caregivers navigate the complexity of clinical trials.

http://www.nbcnews.com/nightly-news/video/online-community-for-colon-cancer-patients-empowering-many-840655427940

For example, a quick search for colon cancer on the US National Institute of Health's clinical trial website brought back 3,913 possible trials. How in the world am I supposed to navigate through all of that information without a medical degree?

So So So

• Bloodwork and treatment at Siteman West County

A few months ago when we were scheduling my appointments leading up to my next set of scans, we figured out that the first week of January was supposed to be a treatment week. However, we already had a vacation planned for that week. Dr. T didn't stress about it (so I did my best to not stress about it), he said that I'd just have an extra week off and I'd return to treatment as soon as I was back at home. So all of my appointments were made accordingly.

Then around Thanksgiving, my treatment had to be delayed by a week because my neutrophil count was too low. So my appointments were all adjusted by a week and it seemed that I would not have to miss one after all.

Until... today's treatment had to be delayed (again) due to a really low neutrophil count. So we are back to where we started, I'll get an extra week off chemo. Seems like the break was just meant to be.

P.S. Other than the low neutrophil counts, the only thing that these two delayed treatment days have in common is that I brought out-of-town family with me to both appointments. Hmmmmmmmmmmmmm.........

#winning

After I finished writing my previous post, I checked my e-mail...

and...

I had a notification from Guardant that my November blood test results were available. The results show that the amount of DNA in my bloodstream with my cancer mutation has DECREASED. It's likely a sign that my cancer is not as active, hopefully thanks to this past summer's Y90 and cryoablation procedures and my current chemo regimen of Xeloda and Avastin. It's not the ND (Not Detected) that this test measured last year when I was also having NED (no evidence of disease) scans but it's ZERO POINT TWO PERCENT. And that feels like a win. Just what I needed today. Guardant's testing is still new technology so it's hard to know exactly how to interpret the results, but I look forward to discussing it more with Dr. T the next time I see him (in January after my next set of scans.) Until then, it's Merry Christmas to me!

915 days

Today marks a weird day. Today marks 30 months (2 and 1/2 years) since my cancer diagnosis. Back in June 2014, it was easy to google my diagnosis, to read the statistics and to feel overwhelmed. But I've learned to understand that I'm not a statistic. I'm not the 70 year-old average stage IV colon cancer patient. However, that didn't stop me from blatantly asking one of nurses about the survival statistics last year. And she confirmed that they tell new stage IV colon cancer patients... on average... 2 and 1/2 years. Of course there are exceptions... and I'm shooting for exceptional.

Nestled all around the surgeries, the chemotherapy treatments, the radiation oncology procedures, the blood tests, the scans and ALL of the appointments, I have taken the trips, bought the (running) shoes and eaten the (cup)cakes. Life is short. That goes for everybody. There have been plenty of hard days and plenty of good days in the last 2 and 1/2 years, and I am thankful for every one of those 915 days. Last week I was busy running around and feeling confident about 2017, but this week I finished a weekly dose of Xeloda and I've been fatigued, nauseous and struggling. Hard days. Good days. I'll take 915 more please.

Because he can

And this video...

http://ftw.usatoday.com/2016/07/espn-craig-sager-fight-against-cancer-video-espys-jimmy-v-award

#onewaytolive #unbreakable #mindovermatter #riseup #sagerlife #kleenex

Craig Sager

It's been an emotional couple of weeks in my on-line support groups. A number of people, very active in the groups, have recently passed away. It makes me sad when I go on-line to look at the groups' postings and none of the names look familiar; the voices that were the strongest when I first joined are not there any more. It makes me really angry at cancer.

And today I heard that Craig Sager passed away from leukemia. This past summer he was awarded the Perseverance Award at the ESPY Awards and I found his acceptance speech to be very inspiring (http://sports.yahoo.com/news/craig-sager-delivers-stirring-espys-speech-i-will-never-give-up-152655840.html). Especially these two parts:

“If I’ve learned anything through all of this, it’s that each and every day is a canvas, waiting to be painted — an opportunity for love, for fun, for living, for learning. To those of you out there who are suffering from cancer, facing adversity, I want you to know that your will to live and to fight cancer can make all the difference in the world. The way you think influences the way you feel, and the way you feel determines how you act.”

“Whatever I might have imagined a terminal diagnosis would do to my spirit, it’s summoned quite the opposite: the greatest appreciation for life itself. So I will never give up, and I will never give in. I will continue to keep fighting, sucking the marrow out of life as life sucks the marrow out of me.”

Brownie Tuesday, Brownie Tuesday

• Bloodwork and treatment at Siteman West County

I woke up today feeling like it was Christmas morning! My friend D has been organizing a group to walk/run the Chicago Marathon next October with me (since I deferred my 2016 entry for health reasons) and today was the day for my friends to find out if they got accepted into the marathon. And so far TWELVE got in and only 1 didn't "win" the lottery and get in. So I've a runner's high going this morning, lots of adrenaline! When one of the nurses called me back to access my port, I was just babbling and babbling (normally I'm pretty quiet.)

In other news, the lab is running slow today and one test tube even had to be redrawn chair-side because of a labeling error BUT it is Brownie Tuesday. Win some, lose some.

I'm good

Tonight I played soccer with my friends against a team of people that were mostly half my age and most likely all cancer-free (although you can never assume anything.) About halfway through the game, we were up 4-0 and I found myself near their bench just in time to hear a little girl say, "they really aren't that good."

I mean, let's be honest, she's right. For me, it's about trying to stay active and run around a little. I'm a 40 year-old woman with stage IV colon cancer, being good at soccer is not high up on my list of priorities. Lately I've been concentrating on being good at getting through each day with a decent attitude while controlling the side effects of my disease and medications. When I slowly get out of bed tomorrow and get myself to the cancer center for chemo, I'll be good (and proud of myself).

I think BC Diane (before cancer) might have been offended by that kind of comment, but not this Diane. This Diane is still getting opportunities to be active and to play a sport that I love with the people that I love. (For various reasons, not everybody in my circle of soccer friends can still say that. So I count it as a blessing.) We all have things that make us happy (even when other people don't understand) and soccer is that for me.

(Why am I writing in third person there? It must be because it's late and I'm restless, but I'm good.) 

December 5th Fund

Somehow I didn't anticipate that doing random acts of kindness today in honor of a woman, a friend to many of my friends, who passed away earlier this year from breast cancer, would be so emotional. Although thinking back about it now, of course it would be emotional.

Tutu to you too

Because sometimes you've had a few hard weeks and you're struggling mentally... but coming across old pictures of yourself climbing on obstacles, jumping over fire, crawling through ice cold mud under barbed wire and laughing with friends... reminds you that you have strength within (and support all around).