A cancer journey – Inlyta does not like Rick … and MDA’s Kidney Cancer Conference!


An update on Rick is in order. I know … it has been two months since you’ve heard a peep out of me. I’ve learned that some things just need time to evolve. In some respects, I miss the kidney cancer immunotherapy trial. It was predictable. We went in every two weeks for bloodwork, visit with oncology and nine times out of 10 … upstairs to the 8th floor for an infusion. Then every three months MRI and CT scans. Last year was hard work but there was a rhythm to it … it felt kinda like a slow waltz that sped up as Rick got better. Just imagine Rick and I in the middle of the dance floor with all these MDA people … everyone with their dance shoes on … swirling around us and smiling.

Back to reality! So Rick started taking Inlyta on Valentine’s day. The drug was approved in 2012. The purpose is to block blood vessel growth which feed cancer tumors. He started with 5 mg twice a day. The drug has lots of side effects and the poor guy had most of the ones listed on the MDA Patient Education handout. Rick lasted 24 days before having to come off the drug. Then a two-week medication break … which was heavenly … I got my husband back. He then started on 3 mg of Inlyta twice a day. The first week wasn’t bad. I kinda thought this was going to be our long-term cancer drug. Then the bottom fell out. On day 11, in early April, Rick was off the lower dosage Inlyta.

Dr. Campbell ordered scans last week on Holy Thursday. Yep … we have been living our Lent again this year! We see him this Friday for results and a path forward. If the scans look as good as last time, there is talk of a medication “holiday” which I think could be way longer than two weeks. This is what I pray for Rick … hourly.

The last time we saw Dr. Campbell he explained that Rick was kinda unusual in the way his treatment unfolded after being diagnosed last year. Normally, a patient comes to MDA in much better shape … not in a wheelchair. They often start with something like Inlyta, called a frontline drug, and then maybe¬†graduate to surgery, an immunotherapy clinical trial, or other treatment. Rick was so bad over a year ago there wasn’t time for a frontline drug. He went straight to the clinical trial … with stunning results. Dr. Campbell believes, and so do we, the immunotherapy drugs are still working. One indication is lots and lots of itching. Go figure!

Did I mention I attended MDA’s Kidney Conference this past Saturday? I was so impressed with the MDA staff presenting! It is the 10th year MDA has put it on for patients, caregivers and the medical community. They always videotape it. When I get the link, I promise to share! My friend, Hildy, a kidney cancer survivor, told me about the conference and we went together. She has been going for a bunch of years. I love Hildy. She is brave, open and a lover of life! Hildy is one of the first people I leaned on at the beginning of our cancer journey.

In a peanut shell … here is what I learned about kidney cancer. Note that some of what I learned applies to all cancers! I learned knowledge is power. If you are a caregiver … become knowledgeable. I hold each kernel of knowledge to my chest and hug it deeply.

Did you know in the United States, 63,000 are diagnosed with kidney cancer each year? I learned kidney cancer does not respond to radiation or chemo and 75% of kidney cancer is clear cell. That is what Rick has. I learned lots of kidney cancer patients ask for PET scans. Don’t. They are not a reliable test for kidney cancer. I learned each patient is very individual as far as treatment. I learned that 10 years ago most people with stage 3 or 4 kidney cancer lived one year and there was little to offer patients with kidney cancer. Now there are 12 to 13 new treatments and more promising clinical trials are popping up. I learned about frontline drugs, immunotherapy clinical trials, and mTor inhibitors which slow down cancer cell growth. I sound like a cancer nerd don’t I? I learned in the next 10 years there will be more personalized treatments available. Right now about 25% of patients are responding to immunotherapy clinical trials and they don’t know why yet. My rock star husband is a success story! MDA wants to know how to help the 75% that are not. Also, the 25% of kidney cancers that are not clear cell need to get their far share of understanding and treatments. I learned that the results of several clinical trials will be published soon. There are many more clinical trials and emerging therapies on the horizon. I learned there are no predictive markers for kidney cancer. I learned that 2013 was a breakthrough year for kidney cancer immunotherapy. Did you know that immunotherapy can kill cancer cells? It is adaptable. It kills specifically cancer cells and it has memory. I think one of the most important things I learned … and this can be applied to all cancers … is DO NOT GET TIRED OF FOLLOW-UP! If your doctor says you need scans every three months, six months, or once a year, get them! Be vigilant!

Quilter’s Patch – Block of the Month – March finished!


I got my lovely daughter, Katie, and grandson, Ben, to pose with one of March’s finished blocks. Last month I tried to get grandson Jacob to hold one of February’s blocks but he wasn’t having any of it. He’s nearly three years old and a man of action. After chasing him around the backyard for a few minutes I gave up. Maybe he will stand still long enough for a photo in April when he officially turns three!

My two blocks for March on the Quilter’s Patch block-of-the-month quilt are all done! Loved the fabric color choices and pattern on the “sidewalk and log cabin roses” block. It’s a really cute block! It amazes me how a block with well over fifty pieces can, in the end, measure the required 12-1/2″ by 12-1/2″. What did we do before there were rotary cutters and precision rulers?

The “petunias” block came together rather quickly! Easy block. Love the pinks.

I’ve probably got a week before April’s fabrics and instructions hit the mailbox. Time to work on unfinished projects while I’m waiting!

Quilter’s Patch – Block of the Month – February


So yesterday, I finished blocks 2 and 3, the cat block and the nine-patch daisy, from Fat Quarter Shop’s block-of-the-month for February. Hope I can keep this up! I consider it a victory to not have fallen behind when life gets in the way … yet!

What I love about these types of quilts is the opportunity to review piecing skills and to learn new ones! So far so good.

Bring it on March quilt blocks 4 and 5!

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?”