The Firefly Quilt – part two

Progress on The Firefly Quilt, designed by Pen and Paper Patterns, is in the can! I’ve got the antennae for 16 blocks completed, the head … and the wings are coming together nicely! Chain piecing certainly has helped make this quilt come together fast.

Did I mention last week this is going to be a very large quilt? At least for me … it will be. The finished quilt dimensions will measure 72-1/2″ by 72-1/2″. If I was keeping this one for myself, I would probably make it with nine blocks and hang it on one of my walls when it was all finished. I would take three of the leftover firefly blocks and make a couple of adorable table runners. But since it is for charity, I decided to go big! Hope it makes lots of money for MD Anderson’s Ovarian Quilt Project!

Stay tuned for progress report next week!

The Firefly Quilt for MDA’s Ovarian Quilt Project

In addition to purchasing lots of fabric at last year’s International Quilt Festival, my sister, Gretchen, and I also stopped by M.D. Anderson’s Ovarian Quilt Project booth. The group has a quilt auction every two years. The proceeds from the auction go to Ovarian Cancer research, screening and awareness. In 2017, over $52,000 was raised from the online auction. They receive quilts from all over the United States and also internationally.

Gretchen and I couldn’t think of a better way to honor our sister, Mary, who died in 2017, after being diagnosed seven months earlier with Ovarian Cancer. She was only 62 years old. We have kicked around a few quilt design ideas that would honor her memory. But nothing really stuck. When I saw The Firefly Quilt, and shared it with Gretchen, we knew this was the one. Mary loved nature. To us … it seems fitting that a firefly, actually 16 of them on the quilt, would help keep her memory lit … and also help to raise money for Ovarian Cancer research.

The Firefly Quilt comes with a “bee” block option which is adorable. The quilt is designed by Pen and Paper Patterns. We loved the colors on the front of the pattern and purchased a kit from Fabric Bubb with that colorway. Sewtopia also has kits.

So far, Mary’s quilt for MD Anderson’s Ovarian Quilt Project is cut out and all the fireflies have antennas! I will post our firefly quilt progress next week!

A cancer journey – scan result days make me nervous

So last week Rick had his three-month scans which included MRI and CT scans and the usual bloodletting. Scan day is emotionally draining and exhausting. Reminders everywhere of how far we have come … and we don’t want to go backwards.

Yep … and it never fails. Despite the anxiety, we chuckle every time we spend the day at MD Anderson. There are new things to learn. This time the lab where Rick has bloodwork in the Mays Building went all techie. We used to fill out a slip of paper with pertinent patient information before dropping it in a little plastic basket and wait to be called up to the desk. The paper slips have been replaced with electronics. Progress? Yesterday, when we arrived at check-in to see Dr. Campbell, all the iPads, except one, were out-of-order. Rick’s clinic went all techie a while ago. Not complaining mind you! I can relate! Heck … after replacing my sim card and getting a new iPhone, I am still dropping calls.

So to put life for us in perspective … since his diagnosis of Stage IV Kidney Cancer just over two years ago … Rick and I have welcomed two grandbabies. Ben, 18-months-old now, was born down the street in the medical center on one of Rick’s long immunotherapy infusion days. And little Zelie was born two weeks ago to our son and lovely daughter-in-law, Kate. Even Jacob has been deeply involved in Rick’s journey. Now four, Jacob came to wish his Pop-Pop good luck two years ago on the day Rick’s tumor/left kidney was removed. Jacob also walked the MD Anderson’s Boot Walk with us this past November while Baby Ben slept in his stroller. You don’t have to tell me we are blessed.

So just how did it go yesterday with lab results? Our visit with Dr. Campbell, our oncologist, and his lovely PA, Simi, was all we had prayed for. MRI … stable. CT … stable. Rick is just over a year from getting kicked off the clinical trial and receiving no cancer treatment. He still itches all the time, mostly from the inside, which tells us the immunotherapy is still working.

I asked Dr. Campbell how patients who are on Rick’s clinical trial are doing because I want to know. My editor, the lovely Cynthia, has trained me well. I had my steno pad all ready for details and statistics. Dr. Campbell indicated 55% of those on Rick’s immunotherapy clinical trial drug ARM of Bevacizumab and Nivolumab are having positive results. In the coming months, the trial will end and it will be number crunching time. I will be there with pen in hand to probe for any updates. It is my hope these two drugs will be the answer for all Clear Cell Kidney Cancer patients … not just for the 55% with positive results. That is probably just 50 people.

And now for the really great news … we don’t go back for FOUR months!!!! Can I get an amen?

A cancer journey – changes in the air

It has been just over a month since my last update on Rick … so let’s get right to it. In April, Rick had lots of scans and the report was awesome. Everything is stable … cancer areas are still very small! It appears the immunotherapy which was stopped months before is still working. Can I get an amen?

Unfortunately, Rick’s lipase was back up … darn lipase. This little blip on the radar screen was probably due to the chemo pill and the immunotherapy battling in his system. So Dr. Campbell prescribed a month of steroids to tame the dragon! We also learned that Rick would now be on “Active Surveillance” for the foreseeable future. That means no chemo pill. Let’s just carefully watch the dude!

Our schedule at MDA would also change to blood work and doctor visit every three weeks with lots of scans every two months. We could live with that. It would kinda be like a vacation from what we have been doing! I’m not gonna lie … a month of steroids was not the vacation part. Just ask anyone that has been on steroids. Sleeping is difficult along with a few other unpleasant side effects.

Then in May, on our 45th wedding anniversary, we visited Dr. Campbell for Rick’s three-week follow-up. Lipase was down drastically and oh so close to normal. It was also Dr. Campbell’s birthday as noted by the party hat he wore. Wish I had got a picture!

After our visit to MDA, Rick and I celebrated with a nice lunch near downtown. We had lots of celebrate. We almost didn’t make it to 45 years.

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 – getting the word out!

Infusion time!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!

A cancer journey – struggling with the schedule

Infusion time!

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.

A cancer journey – waiting for surgery

Lots of wheelchairs to borrow
Not too much to report on the “fighting cancer front” at our house over the past two weeks. Rick has lost his voice for the past 12 days … I mean it is no where to be found. Believe me … I have looked for it everywhere. That and sleep issues have been our main challenges.

It is why we paid a visit to MDA’s Supportive Care for some help. Rick has never taken a sleep medication so this was going to be uncharted territory for us. Getting up seven or eight times at night just isn’t good for anyone. The Supportive Care people have expertise with helping control the many cancer symptoms their patients experience. It took a couple of nights taking the prescription, but now Rick wakes up rested and experiences no fatigue during the day. Can I get an amen?

We also asked Supportive Care with help retrieving Rick’s voice. It is here we learned that MDA doesn’t help with illnesses not related to cancer. Good to know! A trip to our local Dr. Young’s office revealed an ear infection and swollen vocal cords. We left with a few medications. It has been just over a week on meds and not sure the voice is on the comeback trail. We just don’t want this to be an issue to not perform the surgery. That left kidney has got to go!

Yesterday, we survived five pre-op appointments at MDA. Every time I go to MDA, I learn new things. I learned it is a good idea to have a medical bracelet made that tells people he has one kidney and is on a clinical trial. What a great idea! I also learned if you go to your primary care physician with an ailment and are prescribed meds, be sure and let the MDA people know. If you are on a clinical trial, there are certain medications you can’t take! You don’t want to get kicked off the trial. I learned appointment times are kinda like suggestions. Basically, you have a slot! If you happen to be early for an appointment they just might take you. So getting on the road back home early could really happen.

A cancer journey – the third infusion

Infusion drugs!

On Monday, Rick gave lots of blood for MDA to work with. It is MD Anderson’s clinical trial standard operating procedure. The following day we were to  see the doctor and have the infusion. I counted 15 vials of blood taken and I didn’t even faint. OK … I got a little weak in the knees maybe. I don’t know how the lab technicians do this all day.

On Tuesday, we met with Dr. Campbell, our kidney oncologist. Rick’s blood work continues to majorly improve. Yeah! Dr. Campbell also noted that if he didn’t know exactly where the lump on his chest was located, he would have missed it. He estimated the size now at approximately one centimeter. Lots of smiling while this sinks in! The CT scan in a couple of weeks will give us lots more information, but for now, the signs are all there that the immunotherapy infusions are working their magic.

Next we headed over to the MDA’s Main Building for the last of Rick’s long infusions of the two drugs. The Main Building reminds me of the wild west … a lot rowdier than the calm atmosphere of the Mays Building. It was new territory for us as we had always headed up to the 8th floor of the Mays Building for infusions. Not a big deal except I had to figure out where to go to get Rick’s IV started. It has been our experience, so far, the nurses who drip the drugs are not as well versed in starting IV’s. Not to worry … MDA has people that are expert IV starters. Just ask me … I will tell you where to find them.

The infusion started late and took four hours this time. Our world record was five hours … not counting waiting to get in the door! Yeah … you can burn a whole day hanging out at MDA but then they give you a warm blanket and the tension melts away. Katie drove her dad home for me again so I could get back home for Mimi’s bus. What would I do without her?

As I made my way to collect my car from valet parking I had my own adventure. Not to worry … no blood was spilled. The valet dudes were a little pokey in getting me my car keys. Instead a Valet Supervisor came toward me with a clipboard. Not a good sign. Seems one of the valet drivers backed my car, which has backup camera, into a concrete pillar and crunched one of the tail lights and messed up the paint. Really? In the grand scheme of things … not as big a deal as Stage IV Kidney Cancer … and they are paying to fix it.

A cancer journey – week before infusion number three

Infusion drugs!It was just fifty days ago that Rick and I officially stepped across MD Anderson’s threshold. That was mid-February. So far we have paid the hospital eighteen visits, mostly for diagnostic testing. In mid-March, Rick qualified for a clinical trial and started treatment with immunotherapy infusion drugs. This week we are between doctor/bloodwork/infusion visits. He gets a teeny bit better every day, nausea is almost nonexistent, but still has a long way to go.

Since infusion number two, Rick has spent his time working from home with red pen in one hand and yellow highlighter in the other pouring over engineering documents and drawings. Yep … it is all Greek to me! I have no clue what he is doing.

Reflection about MD Anderson – I’ve never been to a hospital that has the patient wear a hospital bracelet, hospital staff calls it a wristband, for months at a time. The wristband contains information like your name … but also your patient number. Rick’s is seven digits. The patient number is very important as it is one of the pieces of information asked for multiple times and scanned during a MDA visit. I’ve been married to Rick for so many years, I have his social security and driver’s license number memorized. And yes … he has been at MDA long enough that I now have his MDA patient number memorized. Oh, and when your wristband gets a little ragged the MDA check-in desks around the hospital have a little gadget that can print out a replacement in a snap! Rick is now on his second wristband.

Since no visits to MDA were made this week we took advantage of inviting worker dudes to the house. We have some home projects that have been on our to-do list since last year. Our very old and crusty water heater was finally replaced. I have been having nightmares it would spring a leak in the attic like it did about 12 or 13 years ago flooding my side of the closet and adjacent bedroom. Potential disaster averted! We also replaced the attic stairwell in the hallway and the cracked windshield on Rick’s truck. There was also a bid for a pocket door accomplished for Mimi’s room. In a few weeks, the doorway will be widened so I can navigate her wheelchair through without gouging the wood door trim. I also finished and dropped off a charity quilt. Future blog post!

This week I learned … waiting for infusion drugs to work takes lots of patience … and we are not patient. I also learned it is OK for Rick to rip off his MDA wristband because he doesn’t want to look at it for a week … and I expect MDA will gladly replace it next week.