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 … promises and second infusion


Last year when Kate, our lovely daughter-in-law, was going through RCIA studying to become a Catholic, my husband made her a promise. He would be there with her at the Easter Vigil in Washington, DC when she officially became Catholic. A few weeks later we paid for plane tickets. I even did something I’ve NEVER done before … paid for four days of hotel on hotels.com. Oh yeah … we were going to be there … or be square!

Shortly after, Rick got the kidney cancer diagnosis and it didn’t look like that promise was going to be kept. I knew Kate would understand but Rick and I were both really upset. We had quietly prayed for over four years that Kate’s faith journey would lead her in the direction of the Catholic Church and now it was going to really happen.

Dr. Campbell told us it was possible Rick would feel better after his first immunotherapy infusion. Maybe even well enough for the trip. Not sure I believed him. But we clung to the possibility. Except the first infusion was delayed five times and time was getting short. Every time I spoke with our son, Ricky, on the phone I would tell him to be prepared that we might not come. Personally, I really didn’t think it was even possible considering how bad Rick felt. We were to leave on Thursday, March 24. That Monday before, we were still going back and forth on whether we should go. On Tuesday, my hubby said, “We are going.” He was a little better … but wouldn’t be running sprints in the airport.

The trip was way more fun for me than for my husband. It was the first time in months that I had sat in a restaurant and held an adult beverage in one hand … especially one so darn cute with lots of fruity stuff poking out the top. After the first three sips, I was calling my Sangria … Sagria. It was a magical night!

We had to majorly slow things down for Rick. He took lots of naps during the day. I also rolled him through the airport in a wheelchair. Rick barely managed to get through the three hours passion service on Good Friday at the Basilica of the National Shrine of the Immaculate Conception in Washington, DC. I don’t know how he did it. Well, it wouldn’t have happened without our son dropping us at the curb. On Saturday, Rick did have to miss the four-hour Easter Vigil. It wasn’t going to be over until 11:30 p.m. and I insisted on him hanging out at the hotel. Kate’s awesome mom recorded the big event on video for Rick to view later.

The day after we got back from our trip, we meet with Dr. Campbell right before Rick’s second infusion. The lump on Rick’s chest had turned from hard to soft and flattened out. Imagine going from a “D” cup to a “B” in two weeks. He is getting some of his stamina back and his blood levels look great. His doctor told us Rick’s improvement was “dramatic.” I love that word “dramatic.”

The second infusion went smoother than the first. Not much in the way of side effects. No MDA appointments for two weeks. We’ve got some home projects that need attention and I finally dropped off our income taxes.

This week I learned … it is lovely when you run into people you know at MDA like the amazing Ev and Joan Evans … oh and my daughter, Katie, is extra awesome. She drove her dad home from MDA when the infusion lasted longer than expected and I had to get back home for Mimi’s drop off by the day center bus. She is my hero! I also learned how much pleasure I get out of just getting the sheets washed when I realize I don’t have to be at MDA the rest of the week! I learned the simple pleasures of walking among the cherry blossoms with people that I love like Aleta, Sarah and Kate. I learned how much of an awesome adult my son, Ricky, has become. He took such great care of his dad and me on our visit. I got a little emotional when he dropped us at the airport. I also learned the priceless value of a kept promise.

Our Adventure Wall

I saw this post on Facebook the other day about “How to Hang Pictures.” It made me think about our “Adventure Wall” in our family room. I have always meant to write a blog post about it. One photograph gave me the idea for the wall. It was one of our son while he was studying abroad several years ago in Spain. Ricky also had the opportunity to travel all over Europe. Oh, and after college graduation he traveled throughout Peru for three weeks with his sister. They brought back hundreds of amazing photographs. But there was one particular photograph of Ricky curled up in a window opening in Dubrovnik that always made me smile. It caught the essence of this funny guy that I call … my awesome son!

But you know … I’ve gathered lots of photos over the years and finally decided it was time to display them so I could look at them all the time. My daughter, Katie, is also a world travel and inspired us to do some traveling. Yep, we have a few hundred photo memories of our own.

Collaborating with the engineering hubster, we came up with a plan. I picked my absolute favorite sixteen photographs … eight horizontal and eight vertical. I had them enlarged to 11″ by 14″ and purchased mats and frames on sale.

It took us one whole day to hang the photos. Hubby utilized his AutoCAD program so we would get super precise with the layout.

Now when I walk past the wall … I dream of where that next adventure will lead us.

Hello again New Orleans!

 


So we hadn’t been back to New Orleans for a couple of years and have just recently returned from a quick weekend visit. While New Orleans is mostly about the food, there is lots of shopping, people watching, wedding parties strolling down the Quarter, street music and atmosphere to be enjoyed. We stayed at our favorite Hotel Monteleone located in the French Quarter on Royal Street. The location is great for accessing shopping and restaurants. We also visited Harrah’s Casino, which is much nicer now that it is a non-smoking casino. Yes … I said non-smoking! I learned lots watching hubby play craps and perhaps next time I might even be persuaded to join him at the pass line to throw the dice!

BREAKFAST OPTIONS – We had some interesting restaurant experiences that I just have to share. Breakfast is my favorite meal of the day, especially when I don’t have to conjure it up. Be sure and check out the Ruby Slipper Café located at 200 Magazine Street, just outside the Quarter. It was recommended by several FaceBook friends and I can see why. The café has several locations and open seven days a week. Their motto is “there is no place like home” and it shows. The staff are the friendliest we encountered during our visit. Hubby had the Eggs Blackstone, which is two perfectly poached eggs over bacon, grilled tomato and open-faced buttermilk biscuit finished with hollandaise sauce and served with breakfast potatoes. Yum! We also had an interesting breakfast after attending Mass at St. Louis Cathedral on Sunday. I had noticed The Grill, 540 Chartres Street, as we walked past it from our hotel. It certainly meets all the criteria of a “dive,” but from the window, had a healthy number of people with smiles on their faces. After Mass, we entered into a world fresh out of the past. The interesting counter configuration with seating stools looked ancient like something out of the 1950’s, or older. I couldn’t help but notice most everyone had an omelet on their plate. OMG … best omelet ever! I had the Vegetable Omelette with delish grits! Eggs were light and fluffy and with over 10 different kinds on the menu how can you go wrong.

OTHER DINING OPTIONS – Dinner in New Orleans is a bit of a challenge, unless you dine at a place that accepts reservations. Wanting to be spontaneous is not recommended. That being said, we had a lovely dinner at King Fish on Chartres Street. They have an interesting menu (crab lollipop appetizer was a huge hit) and the service was great. We also stopped into Kubi’s Bar & Café located at 109 Tchoupitoulas on our way to Harrah’s. Now while I’d definitely call it a dive, hubby and I shared an excellent burger, the Kentucky, brushed with BBQ sauce, topped with bacon, cheese and fried onion rings. Our worst meal was at the Gumbo Shop on St. Peter Street. The line was long, the service too fast, and the food … put fast food to shame. We talked about getting bread pudding for dessert, but skipped it because the food was so bland and well, old-looking. We won’t be going back.

A LITTLE SHOPPING Laura’s Candies has two locations in the French Quarter and has been around since 1913. We couldn’t resist the pralines and promised to come back for more. Unfortunately, we ran out of time! One regret I had two years ago was not making time to check out The Quarter Stitch, a needlepoint and yarn shop, on Chartres Street right down the street from Jackson Square. The place has been open for 43 years and the ladies are so nice. They offered to teach me how to needlepoint, but I declined. These eyes are too old. They have amazing canvases all ready to needlepoint. I lingered through their lovely yarn and chose two skeins of ruby red Merino Superwash made in Peru. Bonus … PJ’s Coffee Shop is right across the street. Hubby had the best time hanging out there while I yarn shopped!

I already can’t wait to go back!

Florida’s white sandy beaches, fishing and Texas Holdem


Just after Easter, I spent several days relaxing in Navarre, Florida on white sandy beaches. Located in the Florida panhandle, we stayed at The Pearl of Navarre Beach. Google the condo name and you will find several ways to rent one of their condos. Every morning someone puts out all the beach chairs/umbrellas for their guests. The water consists of lots of shades of blue … and the sand it was fluffy and white … a great combination!

We did lots of relaxing, walks on the beach, playing board games and even learned to play Texas Holdem. I’ve seriously gotta learn to bluff! The boys did lots of fishing. With options like pier fishing, surf fishing and charter fishing there are choices to be made! One afternoon hubby and I ventured out for lunch. I highly recommend The Slippery Mermaid for sushi! With items on the menu like Sassy Mermaid and Funky Mermaid how can you go wrong?

I gotta give photo credit to Kate’s awesome mom, Aleta. She took nearly all the photographs.

5 things to love about Bruges, Belgium

There is a lot to love about Bruges so it was a little difficult to pick just five things … so here goes. It starts with chocolate! The medieval city is pretty much surrounded by water and, who knew, it has lots of lovely chocolate shops. You can smell the sweet aroma as it hits your nostrils from the street. The Chocolate Line is legendary and probably my favorite chocolate shop! For a small price you can sample anything in the store … usually means picking out a minimum of 3 pieces. You quickly get your chocolate buzz on just walking in a few shops! I think we bought a box in every store we entered. My only regret … not bringing two backpacks for the plane ride home; one to fill with cheese from Holland and the other for Belgian chocolate from Bruges.

Second on my list was Michelangelo’s Madonna and Child housed in the Church of Our Lady. The beautiful marble sculpture is said to be the only Michelangelo statute to leave Italy in his lifetime. It is the same sculpture depicted in the book and movie “The Monument Men,” stolen by the Nazi’s during World War II. It was eventually found and returned. There is a small fee to view the part of the church where the statute rests.

Then there were the lovely surprises like a delightful older gentlemen and his organ. We actually managed to get a video of our encounter but unfortunately we can only run it sideways. When I put a few coins in his cup, I was invited to turn the crank on his organ. The jolly guy put his derby on my head and before I turned over the crank to someone else kissed me on the cheek! We also admired things like an amazing old chest with intricate locking mechanism on the underside of the lid in the Church of Our Lady. Then there was the Caprese Salad that was out of this world! Coming across an old well that probably supplied water to the area for hundreds of years was another surprise.

We stayed at the Heritage Hotel which is located in the center of the city a block from the Markt. A 4-star hotel with fine dining restaurant made our stay complete. Our last evening we sprang for a three-course meal with wine pairings in the hotel’s restaurant Le Mystique. Between each course the chef prepared a “amuse bouche,” which is a little bite of food to amuse and invigorate the palate. The meal lasted for three hours and was the perfect way to end our vacation!

Last on my list of things to love about Bruges was the canal boat ride. Located in middle of the city, the reasonably priced canal ride lasts about 45 minutes. The motor boat holds about 20 people and the captain points out interesting sites. I can’t tell you how many times we got lost or turned around walking around Bruges. It was nice to get a different perspective.