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!

A cancer journey with immunotherapy – maintenance infusion #6 … turtles … scan results

So the hubster had his CT and MRI scans this week, along with his every other week maintenance infusion. This week was maintenance infusion #6 of the immunotherapy drug Nivolumab. The scans are an added stress and just two more things we gotta do … but only every three months. They give us some great information on how Rick is responding to Nivolumab as we very slowly inch toward the finish line of treatment about 17 months from now.

When we both get to be grumpy bugs about “12-hour Thursdays,” I like to tell Rick his cancer journey reminds me of one of Aesop’s Fables, The Tortoise and the Hare.

“Dear … you are that slow and steady tortoise in a race for your life. And we all know who won in that story, don’t we?”

It was during our meeting with the lovely Simi, Dr. Campbell’s awesome PA, that we got the results of the MRI from the evening before. Rick wouldn’t have his CT scan until later in the day. Simi started with the liver tumor which went from 2.1 cm to 1.8 cm. Nice! Just don’t ask me how big a centimeter is! The tumors in both lungs were already reported to have disappeared in a previous scan, so no news there. The tumor on his chest was reported by the radiologist to have “decreased” but no specific measurement was given. I’ll take that and run with it!

I was hoping there would be some good news on the four cancer affected areas of bone. In all these months nothing much has been said about the bone areas. Simi indicated that in three bone areas the cancer was “killed.” Simi then looked us straight in the eyes, starting with Rick, and then grabbed Rick’s arm. With a smile that touched both her ears, Simi repeated that one important word “killed” again. News like that sinks in slowly … and in waves. Oh, and one other bone area, on the 9th rib, had decreased. I’ll reserve my happy dance for later at the house.

Simi also told us Dr. Campbell shares his patient cases with his fellows.

“He doesn’t use anyone’s name, but when Dr. Campbell is describing a patient, I always know when he is talking about you! Rick … you are becoming a celebrity with the fellows. They all want to meet you,” Simi told us.

Dr. Campbell dropped in grinning a few minutes later. He told us Rick’s dramatic results in this clinical trial has shown the “best results he has ever had in a patient.”

So yesterday … was a very good day.

And after all these months I am still learning. This week I learned that only 3% of cancer patients are participating in clinical trials. We need to do better. I learned that being a celebrity sometimes has nothing to do with receiving an award like an Oscar or an Emmy. Sometimes it is just awesome test results and excited fellows! I learned that someone new tells me every day they are praying for us. It is very humbling. I also learned I get lost every time we have an appointment in the main building at MDA. I also learned the gift shops at MDA sell Chex Mix snacks, Rick’s favorite snack. Oh … and I really like turtles!

A cancer journey – six months of treatment down … 18 more to go!

It has been years since I sat down and watched an episode of The Simpson’s. Looking back, I can certainly relate to the kids on the show. We have our own Lisa, Bart and Maggie characters in our family. So does anyone remember The Simpson’s “Itchy and Scratchy Show?” They are a mouse and cat cartoon, within the Simpson’s show. The cat and mouse are actually really mean to each other. I recall always letting out a disapproving “yuck” and covering little eyeballs in the room whenever the duo came on the screen.

Well, we have our own “Itchy and Scratchy Show” at the Frantz house. Not to worry … no violence involved. It seems one of Rick’s side effects from the Immunotherapy is lots of itching. Not only that but now he has little red spots popping up. Reminds me of perpetual chicken pox. So if that is all he has to deal with during cancer treatment, we are counting our blessings big-time.

It is why Rick had a dermatology appointment last week at MD Anderson to help with the issue before things get out of hand and the dude is covered in little red spots. They even did a biopsy to make sure it really wasn’t a big deal. Two prescriptions later, one a gigantic vat of itch cream I swear I could dip him in, and we were out of there. It was the shortest day on record at MDA for us.

This week Rick finished up maintenance infusion number five! Dr. Campbell confirmed that with six months of treatment under Rick’s belt, side effects from the immunotherapy would almost certainly be limited to the itching and was actually pretty common. Rick’s immune system is like another cartoon from my own childhood … Mighty Mouse … to the rescue!

When I mentioned to Dr. Campbell, our awesome oncologist, that maybe he could take out that one stitch from the biopsy last week since we were there, he said, “I don’t have a kit.”

“While I don’t have one either,” I said back.

The dermatologist did indicate to me it was really easy. Sure … that is what they all say … was my first thought. Dr. Campbell then drew a large picture of how to take the stitch out. Like the 84 injections after kidney removal surgery, it looks like I’m committed.

The birthday that almost wasn’t was also celebrated this week. I’m still pinching him to make sure he is real. Rick was the birthday boy with cake baked by adorable pregnant daughter, Katie, with lots of help from grandson Jacob. The little guy cracks a mean egg.

No MDA visits for two weeks. On the radar … CT and MRI scans and maintenance infusion #6. We aren’t even close to done yet. Thanks for continuing to keep us in your prayers!

A cancer journey – knocking the dominos down one at a time

Each early morning visit to MD Anderson reminds me of setting up a bunch of dominos on their short edges in interesting configurations. The hope is after touching the first one, the dominos will all fall, one right after the other, so we can hurry and get back on the HOV toward home before the sun sets. We still haven’t gotten used to the fact … it is probably not ever going to happen. It is why we take two cars for infusion day. That way I can be sure to get home in time for Mimi’s bus.

Maintenance infusion number three happened on August 11, and started with the usual bloodletting. Step two is wait to chat with clinical trial nurse to go over symptoms and blood work. We have always been told the wait is two hours to get back test results. So of course we left the 7th floor and headed down to Cool Beans for coffee and hot chocolate. We found a quiet corner table and Rick set up his phone with our favorite playlist for some chill time.

We headed back to the 7th floor only to find out they were looking for us an hour before to get started chatting early with the clinical trial lady. So much for speeding things up on our part. We won’t do that again. Good news … Rick’s lipase number continues to improve. He is back at the top of the normal range. We chatted with the PA, the lovely Simi, and Dr. Campbell paid us a visit. Turns out he read my blog. It seems I remind him of his mother, who is also a quilter and, I think, teaches English Literature. Who knew? Step three … we headed to the eighth floor where the infusion would happen. We check-in and then go to lunch before heading back up to wait some more. This part of the day is always where Rick and I turn into grumpy bugs because of all the waiting … sometimes three or four hours just to get sent back into the room for the infusion. It is painful. I know lots happens behind the scene until the infusion finally goes drip, drip, drip for an hour. Then wait another hour afterward, for side effects, and finally head for home … in time for dinner.

Note to self … always go to infusion therapy to get IV started. We forgot this time. Some of the ladies in charge of the actual infusions don’t do that part very well. It is painful to watch. I can imagine how Rick felt.

Fast forward to yesterday and maintenance infusion number four! It was pretty much rinse, wash and a repeat of the last one. Only this time MD Anderson had installed IPads on the wall near the check-in desks. The concept sounded like it might work, but I think they need to tweak that one a little. After IPad check-in, you sit down and wait to be called on your cellphone to head toward the check-in desk to get your mandatory MDA “wristband.” The IPad also forgot to inform the MDA peeps that only do “vital signs” that Rick was in the building.

Bottom line … this time we didn’t leave the 7th floor for Cool Beans. Well … actually I left and came back with coffee and hot chocolate. Rick’s lipase is still dropping. It is obvious now the high level had something to do with his kidney removal surgery. Rick had his IV put in by Infusion Therapy peeps. He didn’t get a good one. She stabbed him twice before Rick requested someone else. Then finally the infusion after a long four-hour wait. Rick made it home again in time for dinner.

To mark our continued progress, we are now collecting the wrist bands we cut off at the end of infusion day to visualize how far we have come until the trial finishes in March of 2018. I wish we had started this at the beginning. We would probably have 40 wrist bands by now with all the testing and other doctor visits.

In September, we have two more maintenance infusions, MRI and CT scans. It will be interesting to see if things continue to shrink.

So the dominos … they continue to fall. Maybe not always in the orderly way we want them to. Lord, I think we need to add patience to our list. We continue to feel so blessed and thankful for Rick’s return to good health.

A cancer journey – getting the word out!

The past couple of weeks I’ve been working with MD Anderson’s communication’s person writing about Rick’s cancer journey. The story has appeared live today and I wanted to provide a link so people who are not my friends on Facebook can also read it. It has the potential to reach over 285,000 people with their blog, Facebook page and Twitter account.

Rick and I want people to be pro-active about cancer. We want people to know about clinical trials and immunotherapy and our experience at MD Anderson Hospital! Cancer is such a scary word. The past couple of months several people have told me about one of their loved ones’ new cancer diagnosis. It brought me right back to that dark place in my heart when, in February, we were approaching the edge of the cliff of possibly having to plan a funeral. But there is so much good work being done especially at MD Anderson Hospital and so much hope.

Follow the link below to view the blog post. We still have work to do … but this is our cancer success story in a nut shell!

https://www.mdanderson.org/publications/cancerwise/2016/08/Nivolumab-Bevacizumab-clinical-trial.html

A cancer journey – struggling with the schedule

Two weeks ago, Rick had his first of many “maintenance” immunotherapy infusions of Nivolumab for the clinical trial he is on for his clear cell kidney cancer. The hope is the drug will re-train his “T” cells to recognize and destroy any remaining cancer cells.

Fast-forward to yesterday and we were hopeful to get the go-ahead for “maintenance” infusion number 2. We gotta do this every two weeks for about 20 more months … not to mention scans every few months. It is going to be a very long haul … but I believe the worst is behind us. I’m still trying to wrap my head around the fact that Rick had a kidney/tumor removed two months ago. Seems a little surreal. Rick has been back at work for the last few weeks and was finally cleared to climb on all that fun metal stuff at the plant.

It is why Rick and I have been huddling with the calendar trying to figure out how to integrate these MDA visits into our lives with work and family. The whole infusion thing reminds me of baking cookies. The infusion recipe has a specific order and involves several ingredients starting with blood work. Actually, Rick and I lovingly call it an old-fashioned bloodletting because they take over a dozen vials of blood. That is done the day before, or at the very least two hours prior to meeting with the clinical trial research peeps. She asks bunches of questions to see how Rick is doing and records the answers on a computer. I don’t think she found a spot to record my answer, “Rick has his sense of humor back!”

Next ingredient … we stir in a meeting with the PA, the lovely Simi, and sometimes Dr. Campbell, the oncologist. If all the blood work looks fine, we head to another floor to bake at 350 degrees or until done. Actually, that is where we go for the actual infusion. Like waiting for bread to rise, that part involves waiting around for a couple of hours for whatever goes on behind the scene and finally the infusion. Why am I telling you all this? Because these infusions days can easily burn a whole workday.

So Rick and I tried an experiment this week with the schedule. Rick drove to MDA from work late in the day on Wednesday for his blood work. On Thursday, Rick and I met with the clinical trial “team” in the early afternoon and was approved for his infusion. We figured it would be way easier to make up a few hours at work then a whole day. Good news … his lipase numbers had dropped again. Rick was now so close to the absolute top of the normal range. Actually, there was a few minutes when it looked like we might be sent home again. Imagine throwing out a perfectly good batch of unbaked cookie batter. It felt like that!

I left MDA at 3:30 pm to head back to meet Mimi and her bus. Rick finally pulled up into the driveway after 7 pm. I could tell by the look on his face this wasn’t going to work and he had a “Plan B” in mind. I have a call into Dr. Campbell’s awesome scheduler, Lauren. Hopefully, she can work some magic for when we head back down to MDA in two weeks for “maintenance” infusion number 3.