Quick Update ♥️

We will share a longer update soon once we get settled, but long story short - on Wednesday Frankie got a call from her doctor that they found a blood clot in her heart on the pet scan and that she needed to go to the ER immediately. They take blood clots very seriously so she was then admitted into the hospital and we spent two nights there. After a ton of tests, they confirmed a thrombus (a blood clot) in the right atrium in her heart. They believe it happened likely because as someone with lymphoma you are a lot more likely to get blood clots plus they think the catheter from her port was rubbing against my heart chamber. So, she didn’t get treatment this week, she was put on blood thinners, and next week she will actually get the port removed. In the midst of this crazy news and the updates about her heart, we also found out that her PET scan shows she’s in complete remission!!! Also very unexpected and contributed to this crazy emotional roller coaster. Sadly, all the heart news took away from the magnitude of this positive news, but we know it will start to sink in more as we get settled back home and the heart issues feel managed. She still has 4 rounds of treatment left (2 of chemo and immunotherapy and then 2 of just immunotherapy). As the doctor put it yesterday, remission means there is no more visible cancerous cells appearing on the scan but the additional rounds of treatment are done to get her closer to being “fully cured” which can sometimes take years to get to. So, definitely not completely out of the woods yet and still have a lot of challenges to overcome but this is obviously a huge deal and milestone to get to. As you can imagine these last few days have been a lot…thank you so much for all your well wishes and messages. All in all, the pet scan is showing a really promising response to the treatment, and we feel very confident she has a good path forward for managing this new complication.

Officially More Than Halfway There!

Well once again I'm finally getting to writing this post only a few days before I head back to Houston. My last round of treatment was on July 18th. I had my #1 caregiver, Ty, by my side <3 We've been fortunate that we've had so many people offer to take to me to Houston the last few months that it has given Tyler a break from his endless caregiving :) It was pretty surreal for him because he hadn't been to Houston since our first 11-day trip to Houston that included 8 days in the hospital. It feels like so much has happened since then. Time continues to be such a weird concept for us. Each day feels so hard and long but the weeks between rounds fly by and it feels like I'm constantly heading back to Houston. Plus my body has changed so much in that time and Ty has had a front row seat to see that evolution.

We drove on Wednesday evening, checked into our home away from home, and had some dinner before preparing for a long day on Thursday. Unfortunately, Thursday didn't start the way we wanted -- when I went to get my bloodwork they were unable to get a blood return from my port. After trying all of the usual tricks, they said I needed to go to the Vascular department to have them check it out. It turned out there was a blood clot in my port that they had to clear out with a specific kind of medicine. Supposedly this isn't totally uncommon, but it rattled me. Partially because anything going on with my port is scary but also because it threw off my routine for the day. I've now developed such a routine with each of these trips and didn't realize until my routine was thrown off, how important it is for my anxiety. Because I had to get my port de-clotted, I wasn't able to go back to the hotel for my usual big breakfast (often a breakfast burrito :)) before my doctor's appointment. You realize on a long, intense day like these treatment days are, even the small things matter :) Any way we got the port declotted and ate a quick breakfast in the cafeteria at MD Anderson before heading to my doctor's appointment. Dr. Nair (my usual doctor) was doing rounds at the hospital, so I saw another doctor. It was a pretty straightforward appointment -- my bloodwork looked good, we talked through some of my most recent side effects and how we could tackle them, and then said our goodbyes. As Tyler put it, "it's a good sign when your appointment is short -- shows things are going well!" We headed to my infusion and were pleasantly surprised when we were checked in quickly. We got set up in my room, met our nurse, and quickly got started. Our nurse was one of those nurses that was always thinking a few steps ahead -- so though it was still a long 8-hour infusion, it was so much quicker and smoother than the previous round because 1) our nurse was so efficient and speedy and 2) my blood pressure stayed at a good level so they didn't have to slow down the rate of the infusion like they had last time. It felt good to be walking out of the infusion center when the sun was still up!

These last few weeks have been okay. I have felt really tired, I continue to face various side effects, and generally feel that things just feel harder than they should be. I'm trying to have grace with myself, but it's difficult when it's been such a long journey.

Last weekend we rented a lake house on Lake Austin to celebrate Ty's birthday with his parents who were visiting and some good friends. It was our first "vacation" since this all started and it was so nice to get out of the city and relax in the sunshine. Lake life is good for the soul :)

My parents come into town on Monday and the entire Lewis family will head to Houston on Wednesday morning. I have another scan on Wednesday that will determine what my final four rounds of treatment look like -- If I'm still responding well, it will just be immunotherapy and if not, i'll continue to have these longer infusions with chemo involved. So until then, please send us positive thoughts for this next scan and round of treatment. As I feel like I say most days -- I'm hanging in there! Thank you all for your continued support <3

The Biggest Trooper!

Hi everyone! It’s hard to believe it’s already been 2 weeks since Frankie’s last treatment. Frankie continues to impress all of us close to her during her fight against cancer. She hasn’t stopped showing up for her family, her co-workers, and her friends while she is still learning to navigate her new normal. 

I was lucky enough to join Frankie during this last trip to Houston (6/26-6/28), and my apologies for not getting this update out sooner! 

It was a few very busy days. We left Austin Wednesday morning and went straight to the hotel that Frankie has established as her home away from home. It became clear within minutes of our arrival as to why she likes this place so much. As Frankie got out of the car, one of the bellhops turned to her and said, "Welcome back. It's good to see you again!"And the staff continued to be so welcoming and accommodating during our time there. After we checked in, we walked over to MDA for her PET scan, so Frankie’s oncologist, Dr. Nair, could see how she was reacting to the treatment. After the PET scan, we rested for the rest of the day, knowing that Thursday was going to be a long one! On Thursday, we woke up at 6:30am to get to MDA for Frankie’s lab work appointment. After her lab work, we had a big breakfast to ensure Frank had enough fuel for the day. She definitely lived up to her old name “Frank the Tank” :) After breakfast, we made it back to MDA in preparation for her appointment with Dr. Nair. Frank has quickly become an expert at navigating the MDA maze! During her appointment, we talked to one of the PAs, the social worker, the nurse, and then met with Dr. Nair and a med student. We were all very eager to hear the PET scan results, and there had been a lot of anxiety, understandably so, leading up to this appointment. But then we got the best news we could have received at this time! Frankie is having an “excellent response to the treatment - a complete metabolic response”!!!!! The mass in her chest had shrunk from 10.3cm to 6.9cm! Knowing that Frankie was going into an 8-hr infusion after this appointment, this was exactly the news she (and we) needed to hear. Everything she’s been going through - all of the pain, the treatment side effects, and the emotional rollercoaster - has not been in vain, and she is slowly but surely beating this disease! Dr. Nair gave her a big hug and congratulated her. I was so glad I could be there with her to hear this news and see her reaction. 

We made our way over to another building for her infusion and waited in the waiting room for her room to be ready. It was a busy day at the infusion center, and we didn’t get into a room until 12pm. Her infusion was “scheduled” to be 8 hours, but Frankie now knows that’s more likely to be closer to 10 hours. The infusion nurse, John, was awesome, and he kept us entertained all afternoon and night. This round was her first round of immunotherapy and chemo combined. This upcoming week she will have the same infusion combo, and then in August she will have another PET scan to determine the makeup of the remaining infusions. 

Frank was working her way through the bags until we got to the Rituximab. This drug can cause bad side effects and has to be monitored very closely. They start the drip slow to see how the body reacts before they titrate up. Unfortunately, Frankie had a very low blood pressure, and they couldn’t speed up the drip. It looked like her infusion might not be over before they closed at 11pm and that we might need to return in the morning to finish her bags. As soon as John told her this, her blood pressure spiked! He said, “If I had known I only had to threaten another day for you to get your BP up, I would have said that hours ago!” We appreciated the comedic relief :) A big thanks to all of the friends and family who have donated gift cards, we enjoyed two great Houston meals via UberEats and DoorDash ♥️ and to celebrate the good news she had received, we got our girl her favorite thing, a milkshake! Around 9pm, we realized we were the last patients and family in the treatment center. We watched the presidential debate and then Bad Teacher (a nice reprieve following the debate 🤪), and then Frankie finished her last bag at 10:30pm! Woohoo 🎉 she was done! And we were so so grateful for the team who had been caring for her throughout the day. 

We packed up her our stuff, thanked the staff, and as we walked past the carpet cleaner, we knew we were definitely the last patients in the building. But Frankie was such a trooper! It was a 16+ hour day of getting poked and prodded and schlepping around the MDA campus in the Houston summer heat, and she never complained. She even had the audacity to say, “I don’t know why I’m so tired” 🤪. 

Frankie had been experiencing some chest pain between the 3rd and 4th treatment, so Dr. Nair ordered an EKG just to make sure it wasn’t heart related. Before we hit the road on Friday morning, we made our way back to MDA for the EKG, and luckily, we were in and out quickly! We are so grateful for her care team and all MDA staff we have interacted with during her treatments so far. We truly feel she is in great hands.  

Even with the good news, this doesn’t negate the challenges that she still continues to experience everyday. She doesn’t get to escape this reality, and it can be lonely, hard, and overwhelming. We absolutely want to celebrate this good news, but I’m also keenly aware that she still has a long road ahead to health and a different “normal”. So, please keep sending your love and well wishes her way! We love you, Frank!!!