A cancer journey – what a couple of weeks!

So when last we chatted, Rick missed the last two immunotherapy infusions of Nivolumab due to rising lipase levels. It was thought that perhaps having a little break from a couple of infusions, his pancreas would cool down. Just to make sure that was happening, Rick’s oncologist, Dr. Campbell, had Rick come in for bloodwork last week, our “off” week, right before Christmas. Rick and I totally expected it to go down and that we would skip down the yellow brick road to the 8th floor for an infusion the following week. Not! His lipase more than doubled to 919. Three hundred is considered the top of normal. The only outward appearance of side effects was his itching had increased the past month … a lot. Imagine the worst case of chicken pox … and then double it.

Before we left, Dr. Campbell prescribed a round of steroids, lasting six days, which he believed would help “cool things down.” We also met with a GI to see if the lipase increase could have anything to do with the gallstones that showed up on his recent MRI. An ultrasound was unremarkable and no physical symptoms pointed in that direction. Rick is really attached to his gallbladder and the good news was he could keep it!

So today would be a big day. Our normal MDA day starting with early morning bloodletting, oncology and hopefully infusion #13. Did the steroids cool things down? Would Rick have an infusion today? But wait.

While chatting with our adorable research nurse, Jenna, she casually mentioned a term called “tumor burden” while reading from her computer screen. I learned the number represents the total size all the tumors, except the primary and bone tumors. They virtually roll them in a ball like play dough and place a number on it. Rick’s initial scan in February of this year was 12.2 total cm of tumors, with an additional 10 cm of the kidney. By the September scan, tumors had been reduced to 4.7 cm, and of course, no kidney tumor. That is a reduction of 61% excluding the kidney tumor. Numbers fascinate me … especially ones this good. Shows how far we have come to be sure.

This morning, I walked into the oncology appointment with severe indigestion. Can a plain old bowl of Rice Chex do that? I never have indigestion. The sourness left the minute Jenna said Rick’s lipase had dropped to 281 … totally normal. About 20 minutes later we were headed up to the eighth floor for Rick’s infusion. We are taking this cancer fight one day at a time. God is good … all the time.

A cancer journey – MDA “thank you” tour … scans … and more

We went on a “thank you” tour today at MD Anderson Hospital. It was our very small way to personally thank all those people who have “touched” Rick on our many visits over the past 11 months. We still have a long way to go … over a year of treatment on his immunotherapy clinical trial for clear cell kidney cancer. He is doing great! This will be our first Christmas at MDA and we wanted to let them know that we noticed all those special people who work at MD Anderson Hospital. Yes … we certainly noticed things like the quality care … their easy smiles … the incredible patience with us … the simple but powerful kindness of employees that always put us first. Don’t even get me started on their caring volunteers. I owe some lady a small box of tissues.

It is why I ordered several dozen Christmas cookies from my neighbor, the awesome Marie. She makes these amazing sugar cookies. I mean, they are so beautiful to look at and taste great too. I have to admit … I got the idea of a “thank you” tour from President-Elect Donald Trump. If he can do it … so can we!

But let me back up a day. On Wednesday, Rick had his CT and MRI scans. On the trial he has scans every three months. Since they were afternoon appointments, he did them all himself. I am so proud of Rick. Navigating hospital visits are not easy for him.

Today we met with the adorable Jenna, our research nurse, and Dr. Campbell’s PA, the lovely Simi. The news was great. Liver tumor is still shrinking and affected bone areas still healing. Unfortunately, Rick’s lipase is still rising. It was Simi that also broke the news. The MRI showed gallstones. Geez … gallstones? Really? It may also be the reason for the rise in lipase. So there was no infusion again today. I am certain a game plan will be evolving regarding the gallstones.

So instead of going straight home, we had enough time to stop by to see our daughter, Katie, and hold our little grandson. Ben also got to hold a cookie! Wouldn’t think of leaving them out of our “thank you” tour!

So I know you want to know just who got cookies. We started in valet parking. The lady was so surprised, I also got a bear hug. The four receptionists on the 7th floor of the Mays building also got cookies. I think we made Clarence’s day. What a nice man. Clarence checked us in and made Rick’s wristband. I think he shook my hand three times. Next came the lady that took Rick’s vitals. What beautiful eyes this young lady has.

In Dr. Campbell’s office, our research nurse, Jenna, got two cookies. We couldn’t leave out one for her daughter! Simi received four … one for each of her children. Dr. Campbell received four, and Mae, his nurse, one cookie. Geez … after that we traveled to the 8th floor. Even though there was no infusion we dropped off cookies to the receptionist in the Peach Suite, the nice lady that does vitals there, and the infusion nurse we always ask for … the awesome Elizabeth. She has magic fingers when it comes to finding a vein.

Before we left cookies also went to a guard, the cashier who checked us out at valet parking and the valet dudes that brought our cars. Almost forgot … two more cookies to the elderly couple from Bellville waiting for their car. They really looked like they needed cookies. Just spreading the love … like the folks at MD Anderson do everyday. Thank you MD Anderson … and Merry Christmas!

A cancer journey with immunotherapy – infusion #10 and #11


In mid-November, Rick had his 10th maintenance infusion of Nivolumab at MD Anderson. Of course, the day is a bit more involved than just heading up to the 8th floor. During our appointment with our awesome oncologist, Dr. Campbell, we talked about Rick’s bloodwork. All looked good … except his pancreas, or lipase, level inched just over the line to 326. Something to watch … but we got the “Mother May I” to head to infusion floor.

Since we have already spent a fair amount of time over the past few months on the 8th floor, we have got to know a nurse that really knows her way around putting in an IV. She seems to be able to get that sucker placed with a minimum of “ouches” and little to no bruising. So of course, now we request the amazing Elizabeth! I think we were headed out the door for home by 2 or 2:30 p.m. A most excellent day!

Then last week, on December 1st, we went to MDA for Rick’s 11th infusion. Again, bloodwork looked great … except lipase had nearly doubled to 710 … not as high as after his kidney surgery. But not good. But the dude is feeling just fine. Yep … we got sent home anyway. The old “do no harm” was invoked and we certainly gotta respect that. We don’t have to like it though. I think we sat in the waiting room for ten or so minutes digesting what just happened. I didn’t cry. But we were both quiet. Then hubby placed a call to our oldest. Katie had Baby Ben a couple of weeks before and lives not far. So instead of an infusion … we opted for holding our new second grandson tight for just a few hours before heading north! It was also a most excellent day!