Spaghetti arms

• Bloodwork and treatment at Siteman West County

A cold is a dangerous thing at a cancer center so they have me quarantined today because of my runny nose. Nobody puts baby in a corner, well, except my nurses. #thanksCarla

Other opinions

Things I'm reading...

http://www.nytimes.com/2016/10/02/opinion/sunday/tom-brokaw-learning-to-live-with-cancer.html?smid=fb-share

https://adventuresinlivingterminallyoptimistic.com/2017/01/14/so-this-is-what-cancer-feels-like/

And Lauren Graham's new book. 😂

Scary box of Kleenex

• Bloodwork, appointment with Dr. T and treatment at Siteman South County

When is a cute flowery box of Kleenex more than just a cute flowery box of Kleenex? When the nurse brings it into the room and leaves it, just minutes before I am going to find out the results of yesterday's CT scan. Ummmm. Hello panic my old friend.

Thankfully I didn't need too many tissues. A tumor in my abdominal muscle (on my left side, below my belly button, on the skin-facing side of the muscle) has grown and is showing up on my scans as measurable now. Thankfully when the med student was feeling around today, she couldn't feel it. (I really didn't want her to be able to feel it.) And the inflamed lymph node in my peritoneal cavity... remains inflamed.

There was nothing on the CT to explain my right-sided pelvic pain so we're blaming that pain on surgical adhesions from my 3 open abdominal surgeries.

Other than that, it's back to Xeloda and Avastin. And I'll see Dr. T again in 6 weeks.

Heeeeeeeeeeere we go!

• CT scan at Barnes West County Imaging Center

Today's lesson: Monday morning first patient of the day scans are great. The room was nice and clean (it always is, but today it felt super clean.) All of the staff were in a good mood coming off the weekend. Even the CT scanner didn't seem so imposing with laughter in the background.

As I look forward into 2017 and I think about the wild task that my friends and I have laid out in front of ourselves... running/walking the Chicago Marathon in October... I know that being physically able to train towards that goal... I will need scans that show my cancer as stable or with very little growth... so that I can remain on my current chemo. That starts with today's scan (and then one in April and then July.) Fingers and toes crossed. Of course I'm also hoping for those kind of scans because this is my life we are talking about. NBD.

I'll take Puerto Rico for $200 Alex

The feel of an ocean breeze, the sounds of waves crashing onto the shore, the taste of a salty margarita rim and the warmth of the sun.

"What are four things that help to take cancer off your mind for a week?"

Itsy Bitsy Teenie Weenie Yellow Polka-dot Bikini

The extra week off chemo means I do have a little more energy than usual this week, but I have still made time to be a lazy diva on the beach. And to be rocking my port.

I'm not one for big New Year's resolutions but I hope 2017 will bring me greater self-confidence and less grief. (I know it will take work on my part... as well as others in my life.) 2016 was a real sense-of-self killer. It tested my faith, my marriage, my friendships, my career, my health, my spirit, my heart, my soul... and not everything has made it through without damage. ¡Adiós 2016! I've definitely come out the other side a different person.

self-con·fi·dence

/self-ˈkänfədəns/

noun

1. a feeling of trust in one's abilities, qualities, and judgment

   synonyms:

   morale, confidence, self-assurance, assurance, assertiveness, self-reliance, self-possession, composure;

grief

/ɡrēf/

noun

1. deep sorrow

   
   

   synonyms:

   sorrow, misery, sadness, anguish, pain, distress, heartache, heartbreak, agony, torment, affliction, suffering, woe, desolation, dejection, despair;

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.