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!

Tina’s “Lollipops” quilt


I am a better quilter because of some of the talented ladies I hang with! One of those many gifted ladies is Tina. She has some serious skills! I interviewed Tina about a year ago wanting to take my blog in a different direction. Not just show people what I am doing all the time. Boring! Thought it would be fun to showcase some of my friends’ work. Loretta … are you listening? Hopefully, you are next on my list!

Unfortunately, cancer became a hot topic at our house and Tina’s interview notes got buried. I found them the other day … so here goes!

Tina has been quilting since 1999. So you don’t have to get your calculator out … that is 18 years! She told me that her grandma quilted. If any of you happen to be about our age, and quilters, you might remember back when Alex Anderson had a television show. It was awesome! Two ladies that give Alex Anderson lots of credit when it came to getting them seriously hooked on quilting … was Tina … and me! I’m certain there are thousands of others. So after that, Tina purchased one of Alex’s quilt books. Then she took a quilting class. The rest is history!

Tina has been a member of the Kingwood Quilt Guild for over ten years and has taken lots of classes through the guild. She joined a quilt bee a bunch of years ago also which is where I met Tina.

The “Lollipops” quilt is from a Laundry Basket Quilts pattern from 2008 and finished measures 40″ by 40″. Tina told me when she saw the pattern it made her smile. That is totally what happens to me too! The fabric for the quilt came from her fabric stash. Don’t you LOVE her color choices. Thanks Tina for sharing your story with me! You are my quilt hero!

Quilter’s Patch – Block of the Month – January

The minute I laid my eyeballs on Edyta Sitar’s Quilter’s Patch quilt featured on the Fat Quarter Shop’s website, I was in serious love. Sitar, of Laundry Basket Quilts, is one of my favorite quilt designers. Her butterfly and elephant quilts are currently in my quilting queue to be pieced.

I could tell from the Quilter’s Patch photograph, the quilt would be a challenge using a variety of piecing techniques. And since I don’t really have a beautiful quilt that screams “SPRING” in my little quilt collection, this one was going to be IT! I reserved a spot on their website for the block-of-the-month quilt late last year.

So January’s installment arrived a couple of weeks back, along with Edyta Sitar’s book, and I just this moment finished my first two blocks. The year-long project features first the Cosmos and Delphiniums flower blocks. Lot of fabric pieces to piece … great directions … no shortage of fabric. This is my second block-of-the-month through Fat Quarter Shop’s website. They are pros and do a great job! Hopefully, I can keep up the piecing pace to have all the blocks finished during the proper month.

I understand this block-of-the-month is full, but Edyta Sitar’s awesome book is available. I feel certain for the adventurous soul, it would be fun to come up with alternate color choices. Happy piecing!

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?”

Quilting projects finished in 2016!

pop-pop-and-dr-jacob
So taking a look back on 2016, when the year began I would have never guessed the subject of cancer would have overtaken this blog, and our life. But it did. Hubby is doing great. But he is just halfway through treatment.

So despite how the year unfolded, I still found time to finish five quilting projects. A few of the quilt projects had been started in 2015. For me … the creative outlet of cutting big colorful pieces of fabric into little pieces, and then sewing them back together, is a huge stress reliever. Sounds crazy … I know. But quilters totally get it!

The projects finished include an I Spy quilt for St. Martha’s Catholic School fundraiser. I used a jar quilt pattern purchased from Missouri Star Quilt Company, along with a layer cake of novelty fabric also purchased from MSQC. Kim Norton used the digital pantograph called “Graffiti.” Personalize It Kingwood embroidered the label!


I also made my grandson, Jacob, an I Spy quilt using the same pattern and novelty fabric. I altered some of the “jars” to include a few special pieces of fabric. I named it “I Spy Jacob.” Jake picked out the binding fabric. Kim Norton machine-quilted using a multi-colored thread called Cleopatra. The digital pantograph is called “Circle Swirls.” Again, Personalize It Kingwood embroidered the label.

The Christmas table runner was made out of extra squares placed on point from my “Santa Baby” quilt for my little sister, Gretchen. My adorable sister picked up two 2016 Row-By-Row patterns/fabric for me in her part of Texas. Making her a Christmas table runner was the least I could do! I gave it to her at Christmas. Unfortunately, the photograph of her with the table runner turned out too dark. The lighting in my family room sucks! The table runner was machine-quilted by the amazing Kim Norton of A Busy Bobbin with Raspberry Ripple colored-thread using a digital pantograph called “Star Dance.”

I also finished a 2015 Mystery Quilt for my lovely sister-in-law Bonnie. The block-of-the-month was purchased through The Fat Quarter Shop, one of my go-to online shops for quilting fabric and projects. Bonnie, who lives in faraway Oklahoma, received the quilt in time for Christmas. This quilt was so fun to make and was my very first mystery quilt. Each block was designed by a different quilt designer. I named it “Town Square.” The quilt was machine-quilted by Kim Norton, of A Busy Bobbin, with Canaan-colored thread using a digital pantograph called “Creeping Fig.” The quilt label was embroidered by Personalize It in Kingwood.

My last finished project was for my brand new grandson, Baby Ben. He is a doll! Ben turned two-months-old this week and now he has his monkey quilt just in time for “tummy time.” The quilt pattern is by The Teacher’s Pet in Baton Rouge, Louisiana. After piecing the wide fabrics, the monkey and Ben’s name were fused, zig-zagging around the fused edges. A couple of years ago I made Jacob a baby quilt using their giraffe pattern. So cute. They also have a flamingo and alligator version. Kim machine-quilted Ben’s baby quilt with Limestone-colored thread using a digital pantograph called “Whole Lotta Bubbles.” Personalize It Kingwood embroidered the quilt label.

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!