Since June 23rd, 2014

Thursday, October 27, 2016

Caution

My next prescription of Xeloda has arrived.

Tuesday, October 25, 2016

Don't worry, be happy

  • Bloodwork, appointment with Dr. T and treatment at Siteman South County
Bad news would never be printed on bright green paper, right?


Right! We talked with Dr. T and one of his fellows about last week's scans and they were SO HAPPY. I mean, REALLY HAPPY. My mind was having a hard time processing it because again I was ready for the step up to Folfori chemo. And I think he could see it on my face... so we went through his thought process carefully and he went over the studies that backed up his suggestion for me to stay with maintenance chemo at this time. So we maintain! I had to keep telling my face to "be happy!" because I don't think the message was getting through.

Thursday, October 20, 2016

No new news is good news

The MRI/CT reports become available in my on-line patient portal late this afternoon.

There doesn't seem to be any new significant findings, so that's good. There are always a few things in the detailed report that I want to discuss with Dr. T, sometimes it's just the way things are worded or maybe it's something that hasn't been mentioned in a report before. But overall, the summary is that the liver tumors are responding well to the cryoablation and Y90 procedures. So we'll focus on that and wait to meet with Dr. T next week to see if he still recommends Folfori. My guess is that he will, since the liquid biopsy test from August showed an increased number of cells in my blood with my cancer's genomic alteration.

Guardant is the company that has been processing my liquid biopsy tests and I think this information from their website is useful:

What are genomic alterations and why are they important to cancer?
Genomic alterations are changes that occur within the DNA of cancer cells. Some of these changes accelerate the growth of cancer.

More information about the Guardant test: http://www.guardanthealth.com/guardant360/#how-it-works

Wednesday, October 19, 2016

It's a two gown revelation

  • MRI/CT at Barnes West County Imaging Center
I've decided that early afternoon scan times are no bueno for me. Sure, I get up early to eat breakfast but then I have to wait to eat again until after the scans, so I'm super hungry by the time it's over. And today, the techs had PIZZA... just sitting there, smelling all delicious and mocking me.

After my port was accessed and I got changed (one gown on open to the back and another one on like a robe, my new favorite style, thank you nurse), I had to to wait a little bit while the previous patient finished but I was happy to hear J's voice coming from the CT room. The best kind of tech for me is one who makes it all seem like no big deal, like I just get a scan everyday and it's nothing. I don't even get the full spiel from J anymore, I'm just in and out with "don't forget to drink lots of water" and "see ya later."

As far as the MRI, which took about 45 minutes, I went through the trip to Colorado in my head a few times, distracting my brain from thinking about being wrapped down and pushed inside a tiny, confined space. I was mostly successful.

Tuesday, October 18, 2016

Happiness and laughter in Denver

What should I be doing?

With Dr. T planning Folfori chemo for this week, we decided to plan a mini-vacation as a preemptive strike against our worries and fears for a few days.

We picked Denver, for it's good airfare sale price from St. Louis, for all of it's outdoorsy Fall goodness in October and for the fact that neither of us had ever been there.

And it didn't disappoint. We arrived to the most beautiful, sunny, 80 degree days of awesomeness.

One quiet day was spent walking around the Denver Botanic Gardens (Botanic? Yes.) and another was spent watching a Liverpool game with the local supporters' club at a great Irish pub called The Abbey Tavern. We did try to stay busy, we took a tram to the top of Pikes Peak, we walked around the Garden of the Gods in Colorado Springs, we went to a Major League Soccer game to see the Colorado Rapids play the San Jose Earthquakes, we hit up the Museum of Nature and Science to look at some mummies and we walked the steps of Red Rock Amphitheater. My highlight was when we drove to Estes Park and managed to take a short hike in Rocky Mountain National Park, where Hector captured this moment. I don't know why, but it's one of my favorites.

Rocky Mountain National Park














This picture is pretty great too, the little lake was the turnaround point of our hike. We climbed up nearly 1,000 feet from the trailhead to be approximately 8,850 feet above sea level.

Can you find Hector?














While we were in Denver, we also got to have dinner with some friends of mine who moved there about 6 years ago. It was great to catch up, share Hector with them and laugh about old memories (even if we did somehow forget to take a picture together!) My friend M shared that one of her sisters was recently diagnosed with breast cancer. And that sucks. I hate to think of anybody else I know (even by two degrees of separation) going through any of this. I tried to reinforce that every cancer patient's experience is unique, especially with her sister right at the beginning of it.

So now I'm writing this as we fly back home and return to the real world. The flight attendant says we are beginning our initial decent into St. Louis, ending our escape. Queue the ominous turbulence...

I still don't know what I should be doing, but I'm going to continue to try and enjoy whatever it is as much as I can.

Wednesday, October 12, 2016

Hiccup

  • MRI/CT at Barnes West County Imaging Center
I was scheduled to have scans today but there was a hiccup with the insurance authorization so they've been rescheduled for next week.

Thursday, October 6, 2016

Wanted: NED

A memory reminder popped up today on Facebook. One year ago today was the last time that I had a scan marked as NED (no evidence of disease.) Of course we now know that the liver lesions on my NED scans were actually cancerous, so technically, I was never really NED. But hey, I still like NED, he's still my friend and I hope to see him again sometime.

Reality bites

This article pretty much says it all. If you watch the video, her oncologist says... "I wish I had a crystal ball to be able to look ahead and say things look good today, are they going to keep looking good for the next... for the next couple of weeks... for the next couple of months? I don't know."

Wednesday, October 5, 2016

Healthy(ish) looking

  • Abdominal ultrasound at Barnes West County Hospital
The technician who did my ultrasound today was professional and nice. She had reviewed my last CT and asked me a number of questions about my procedures from the summer. Since she isn't at Siteman nor specifically treating cancer patients, I can easily understand that she wouldn't know the ins and outs of every cancer treatment. This is just a guess but I would bet that an ultrasound tech sees a lot more lady parts than livers.

I did have to laugh to myself because her first question once we got settled was "so do you have a family history of colon cancer?" It's always the first question when I meet somebody new in a medical environment. Basically, why the heck does this 40 year-old healthy looking woman have stage IV colon cancer. If it could happen to her, could it happen to me? That's what I feel like is always running through their minds. I'm quite certain that when she called my name in the waiting room and I stood up, instead of the many gray haired people also there, her mouth dropped open for a few seconds.

Hopefully I'll hear from Dr. T's office this week about the results.

Pink October

Tuesday, October 4, 2016

The man with the bow ties

  • Bloodwork, appointment with Dr. T and treatment at Siteman South County
We talked with Dr. T today about managing my pain and nausea. My abdominal pain has been spiking higher over the past week and he prescribed me something to help with that. They're going to take a closer look at my liver and gall bladder tomorrow with an ultrasound to hopefully get a clearer picture. I felt good about the appointment.

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