A cancer journey – our new normal is ahead of us!

I like the sound of that!
So it is been over a month since my last post. Time for a little update. Last post Rick came off the clinical trial. The immunotherapy drugs worked great on his cancer cells … but went a little nuts on his pancreas. Thankfully, Rick went from very high levels of lipase (pancreas levels) to almost normal in just a few weeks. The wonders of steroids. Ya gotta love ’em. Of course, Rick also got some kind of a wicked cold that included a horrible cough. It hung around for weeks and is now almost history!

So our next step? Dr. Campbell pulled a cancer pill out of his oncologist tool box. Inlyta … take it twice a day. It does much the same thing as one of the immunotherapy infusion drugs. It cuts off the blood supply to cancer cells. One of the most unusual side effects of the drug … there are others … is that Rick’s hair is going to turn white. Well, he isn’t far off so that one is totally not a problem.

“Pretty soon I’ll look just like Col. Sanders,” Rick laughed.

If the Inlyta does its job, it looks like our visits to MDA will slow down. Praise Jesus on that one! So once we get rocking and rolling … major scan day tomorrow to set a benchmark on where he is … we will be visiting Dr. Campbell every six weeks and scans every three months.

Don’t tell anyone … but we could be getting our life back!

A cancer journey – coming off the clinical trial

Yesterday, Rick did his usual early morning bloodletting in anticipation of perhaps another immunotherapy infusion of nivolumnab. It was not to be. Rick’s lipase was 3,082 (normal is between 23 and 300) and during the past two weeks he has felt it. So … Rick is officially off the clinical trial. The nivolumnab is not being kind to his pancreas and essentially the important organ has made it perfectly clear Rick’s body has had enough … for now.

From a cancer perspective, the drug has done amazing things and we are over the moon about his progress. In February of 2016, thoughts were creeping into our minds a funeral was on the horizon. We were so close to the edge of the cliff. Today, Rick and I are making travel plans for adventures, grandson Baby Ben’s baptism, grandson Jacob’s third birthday, our son Ricky’s graduation with a Master’s (party time!) and so much more. Did I mention Rick and I will celebrate 45 years of marriage in May? I know … 2017 is going to be a great year.

Another round of steroids was prescribed … and amazingly … today Rick is feeling better.

So what happened in 2016? We did some really hard work at MD Anderson Cancer Hospital in 2016. Along with tons of prayers, love and support, some incredible healing happened. Some time this year I want to write about all the people that helped us with our special needs daughter, Mimi. An important part of the story I have left out.

I calculate Rick had at least 40 tests (most of them bloodwork, scans, etc.), 34 physician visits, one huge surgery with a 5-day stay to remove his left kidney, three initial immunotherapy drug infusions of nivolumnab and bevacizumab, 11 immunotherapy infusions of nivolumnab after surgery, and three missed infusions due to high lipase levels. What can I say … Rick is a “rock star.” Took him ten months to kick nearly all those tumors down the road and into a ditch.

2017 is going to be a little different. We go back to see Dr. Campbell, Rick’s oncologist, next week to discuss the plan and make sure his pancreas has recovered. It appears Rick will be put on an oral medication that cuts off the blood supply to the remaining tumors. Scans will still occur every three months … and not so many visits to MDA. Can I hear an “amen?”

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!

A cancer journey with immunotherapy – Infusion #8 and magical infusion #9


Since maintenance immunotherapy infusions are pretty routine stuff, I’ll be writing about them two at a time. Both infusion number 8 and 9, two weeks apart, started at 6:30 am with bloodletting. Only now since we are so far into the clinical trial, they only take about five vials instead of 15. Then we hang out for a couple of hours and wait for test results before meeting with clinical research peeps and oncologist. After bloodwork is blessed, we head up to 8th floor to wait for infusion. Usually back at home by 2 or 2:30. We can do this!

Infusion #9 was a pretty darn special forty-eight hours. Our daughter, Katie, went into labor with her second babe the day before the infusion. When I got the news, it took most of the morning to get my ducks in a neat little row. I quickly packed a bag, got a quick kennel reservation for Lulu, and a spot for Mimi at her respite house before heading into Houston for a few days. There was a high alert placed for our son-in-law’s parents, Nana Jana and Pee-Paw to assist with little Jacob. They drove in from the Dallas area. Yes … it would take four grandparents to take care of one little toddler! Jacob is a busy boy. Rick and I picked him up from daycare and then out to dinner. As Houston is not our usual arena, we relied on Yelp for dinner spots and almost wound up taking little Jacob to a sports bar. A quick call to our daughter in labor and we settled into a more appropriate dinner spot.

The following morning, also infusion #9 day, grandson Baby Ben arrived … 8 pounds, 7 ounces! Rick started his day at MD Anderson. After dropping off Jacob at daycare, I hurried to get my paws on our newly born Baby Ben. Such a handsome little guy! I am in serious love! Later in the day, I arrived at MDA to supervise Rick’s infusion. Afterward, we headed around the corner to see Baby Ben. I have an adorable photo of Pop-Pop wearing his hospital bracelet from MDA holding Baby Ben all tightly wrapped up with his hospital bracelet. All in all, an interesting infusion #9 we will never forget! Prayers and MDA made this magical moment possible!

A cancer journey with immunotherapy – infusion #7 sweet spot and a return trip!


Last week we had a major milestone with “the schedule” at MD Anderson. We discovered our sweet spot after lots of 12-hour “infusion” days. Basic schedule now is bloodletting at 6:30 in the am, meet with clinical trial nurse and oncologist at 8:30, and then a lovely infusion before and during lunch! No more grumpy bug faces on our part. I think we got this! Maintenance infusion #7 was a like a gentle fall breeze and we got home about 2 pm.

The most interesting part of the day was meeting with one of Dr. Campbell’s fellows! I learned our awesome oncologist, Dr. Campbell, gets a new one each month. I wish I wrote down his name. The young man was chatty … I love that … and has a PHD in immunology. He told us Rick had kidney cancer long before the severe symptoms appeared that lead us on the quest to figure out what was wrong. He called those scary symptoms the “tipping point.” I learned once you get to that point it is imperative to quickly get a correct diagnosis and start treatment. We also learned that Rick’s clinical trial for clear cell kidney cancer now has all their sixty patients. Rick was number 36. No more slots are available. So far Rick is still the rock star performing the best in this particular immunotherapy trial. Sixteen and one-half months to go!

The day after the infusion we took a trip … back to Washington, DC … to hang for a few days with our son and lovely daughter-in-law. We were there last in March to fulfill a promise and witness Kate’s confirmation into the Catholic Church. That trip was also after Rick’s very first infusion after being approved for the clinical trial. We went back and forth on the teeter totter about whether we should go. Rick was in lots of pain and nauseous most of the time. It was Rick’s decision to go for it … and we made it happen. I remember pushing him through the airports in a wheelchair. Back then he didn’t walk much in D.C. He was mostly there in spirit.

What a difference seven months make. This time we stayed up late, walked our feet off, got up and personal with lots of Washington D.C.’s monuments, went on an awesome history tour (History Nerds) of the Gettysburg battlefield, played trivia with Ricky’s cadets in a bar, toured the Holocaust Memorial Museum, and so much more. I think I got my hubby and travel buddy back!

My favorite day was the Gettysburg battlefield tour in Pennsylvania. Ricky and the lovely Kate had purchased the tour for hubby’s birthday present in September. I had no idea Gettysburg was only a ninety minutes drive from Washington, D.C. Al Condit was our amazing tour guide on the History Nerds tour bus which lasted just over two hours. The comfortable bus held about a dozen people. Al knows his Gettysburg history and provided non-stop fascinating commentary and occasional videos on the famous three-day battle. We got out of the bus a couple of times … once on the Confederate side and once on the Union side at Little Round Top. While there are many ways to experience Gettysburg … I totally recommend the History Nerd tour. Just saying!