Rain rain go away

• St. Louis Relay for Life event, sponsored by the American Cancer Society

Tonight we attended the first ever St. Louis Relay for Life event. It was the combination of a number of smaller events held around the area in previous years. Let's just get it out there, it rained... A LOT. We tried our best to keep walking and to keep participating but eventually the event was shut down early, canceling the luminary ceremony and cutting the fundraising hours short. We donated to the raffle and signed up for a silent auction item... and the good part about a small crowd is that we actually won the big raffle item as well as the silent auction item that I wanted. Awesome!!?? I am now the proud owner of an autographed Abby Wambach picture and a brand new guitar. Yes, me of no rhythm, I have a brand new guitar. I thought I'd give it to my nephew but apparently he no longer plays guitar. I wonder how much lessons cost?

Wave your flag

• Bloodwork and treatment at Siteman West County

1942, 1961 and 1949. Those are the birth years of the other three people in my pod this morning. I don't know what kind of cancer brings each of these people here but once again I'm the baby.

My little neutrophils are throwing their white flags around again and we were this close to having treatment delayed today. The saving grace is that we're trying to stay on schedule and not interrupt that schedule when we travel next month, so we are going forward with treatment today. My Xeloda dose is going to be slightly reduced and I'm reminded to be SUPER careful about avoiding sick people and washing my hands, etc. The usual.

We've been here since 7:30 this morning but even as the first appointment of the day, it'll be 3+ hours before we're done. 

One day at a time

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

I was hoping to see Dr. T today but instead it was two NPs again. The good news is that the scans look good. There is mention of a stable cyst in my liver but this is the first time that I've heard about it so they are going to have last week's test compared to my MRI from January. We were able to pull the March CT images up while we were talking and you can see that yes, it is the same size, or "stable", but there is no mention of it in that CT report. When I ask for clarification for how they know it is a cyst, NP A says it shows up differently on the scans. I'm not totally convinced. I mean, I trust her but really, it could be anything, right?

My bloodwork is okay, except my poor neutrophils are struggling again. While we aren't changing today's treatment, we will be keeping an eye on them and could possibly reduce my Xeloda dose in 2 weeks. They are low enough that again I am reminded to be careful being around anyone showing signs of being sick and to be extra careful about washing my hands, etc.

During my appointment at the counseling center yesterday, my new psych was asking me if I had ever had a talk with Dr. T about my prognosis for my particular case, ie: more than a generalized outcome based solely on my initial diagnosis. And the answer to that is NO. Well, it was, until today. It took me a while to get the question out and I started crying but NP A knew what I was asking. And yes, the average survival time for stage IV colon cancer is 2.5 to 3 years from diagnosis but I am currently not showing any signs of disease so it could be longer than that. Of course she can't predict the future or guarantee anything, but the fact that I am NED right now would lead her to believe that I could be above average. I'm summarizing here and using my words not hers exactly but basically that was it. So we keep moving forward, one day at a time.

There are worse ways to spend a Tuesday morning.

Testing the theory that everything is better with a gooey butter cake pastry.

Forget about it

• Appointment at the Counseling Center at Siteman West County

Today I met with a new psychologist. It was hard to have to kind of retell my story from the beginning. It's not that I want to forget about it all (maybe I do want to forget parts), sometimes it's just hard to verbalize it all again.

Things that make you go hmmm

Here is what I'm wondering. If the CT before my first surgery didn't show the tumor in my colon and the spot in my liver, what makes us think that we can believe the latest images? Adding this question to the growing list for my doctor's appointment on Tuesday.

Whiff

Played in a whiffleball fundraiser for 3 Little Birds 4 Life today. It got a little messy.

NED

I was able to access the notes about my CT on the patient portal this afternoon and I am still NED. Hip hop hooray!

 

Breathe

• CT scan at Siteman West County

The lady who checked me in this morning was super friendly. It was "beautiful girl" this and "hunny"" that and "darling" this... I think I was too tired to appreciate it but I was smiling. The scan itself was uneventful. I did have to laugh at myself though. For my previous CTs at this location, I've had the same male technician and I always laughed at how deep his voice sounded over the speaker "breathe... and hold it... and breathe". Well duh, it's a recording. Or else today's female technician has some explaining to do.

Love letter

Dear scanxiety,

I know you want to have another slumber party tonight but I'm tired. I would really like to get some sleep so that I can function better tomorrow. Emotions feel so much more raw when I'm tired and anxious. And I'd prefer to not cry in the bathroom again tomorrow. The scan will come and go in the morning and I will do my best to be at peace with the results.

I know that you might be "winning" as I lay here awake at 1 a.m. but don't take too much satisfaction in this victory. With each passing hour that we spend together, I am learning your tricks. Get me to worry about things out of my control. Okay fine, small win for you.
 

I'm going to turn you off though and now that we've had this little chat and I've said my piece, I'm going to peacefully drift off to sleep...

You'll have to read yourself a bedtime story. Di out.

Training kit