{Hopefully} a Third of the Way There!

Well here we go again! Can't believe it's already been two weeks since I was in Houston for another round of treatment -- time is weird these days...

Two weeks ago I had my second cycle of the clinical trial (and my third overall infusion (out of hopefully 9 total)). It was the same as my first round of the clinical trial where it only included immunotherapy so in general I felt like I knew what to expect but as with every part of this experience, you can't really predict anything. I've found I really have to take each day at a time because my body is constantly changing and responding in different ways.

I was lucky enough to have one of my longest and dearest friends from Santa Barbara, Hailey, join me in Houston. Hailey and I became very close friends in high school, did the "long distance friendship thing" during college :), and then both ended up in Austin right after we graduated. She was kind enough to offer to drive me to Houston, keep me company in the hotel, join me at my appointments, and be there to keep my hopes up during the infusion. We had such a good time together! Though I wouldn't wish this experience or treatment on anyone, it was a really nice distraction to have a close friend there to keep me company and keep me entertained during such a difficult time. All in all the trip went smoothly -- we drove to Houston Wednesday evening, I had bloodwork first thing on Thursday, saw Dr. Nair late Thursday morning, had my infusion Thursday afternoon, and we were able to head home to Austin Thursday evening. Dr. Nair greeted me with a hug (as he does in every appointment now) and was eager to hear how I was feeling. In general, he was very pleased with my bloodwork and how my body appears to be responding to treatment. He was happy to hear I was continuing to experience improvements in my symptoms and pain from the disease itself. Though he recognized we have a long way to go and still a lot we don't know, he left me feeling optimistic after my appointment which was a great feeling going into my infusion that afternoon.

Unfortunately, this round of immunotherapy hit me way harder than the first cycle when it comes to side effects. The side effects didn't start until a few days after leaving Houston, but unfortunately I felt awful. I had some of the same symptoms as the first time, like unbelievable exhaustion and headaches, but also was faced with new, intense symptoms, like stomach aches and extreme nerve pain down my legs and feet. Yesterday was the first day I felt "human" in the last 8 days. Let me tell you...last week was rough. Both physically and mentally. It was really difficult to wake up each morning hoping I would get some relief and instead be faced with another day of not feeling well. The nerve pain made my exercise and ability to get out of the house for walks difficult and it wore on me mentally. Tyler was an angel and was very patient with me while I felt down and discouraged by it all. He continued to be his amazing positive self and helped me focus on getting through each day. He even helped me motivate to go to a concert of a favorite artist on Saturday -- I had bought tickets months ago and though it seemed hard to imagine that I was up for it, we both knew it would be harder for me mentally if I didn't make it. We went to one of my favorite restaurants beforehand, ate some yummy pizza, and then got a pedicab to the show. Though the concert felt difficult for me and I had to take breaks to sit down and just listen to a lot of it, I am so happy that I went. Music is good for the soul <3

After sleeping basically all day Sunday, I woke up feeling more energetic on Monday. As I exclaimed to Tyler yesterday evening, "I finally felt like a human today!" I have to keep reminding myself this is all part of the journey. It's definitely not an easy one and continues to test me mentally in ways I never imagined. Two weekends ago I was heartbroken to be missing one of my best friend's weddings and was feeling the unfairness of this disease. This last weekend I was feeling tired and overwhelmed by the seemingly never ending side effects from treatment. Sometimes it is just hard and that's okay. I also need to honor that and give myself some grace.

But today I am so grateful for Tyler, my family, my coworkers, and my friends who continue to lift me up, especially on the hardest days. Time to hopefully enjoy a week more of feeling "good" before I head back to Houston on the 26th. 3 weeks in between cycles sure goes fast when you feel like poop for half of it! :)

Infusion #2 - Complete!

We can't believe it's already been 3 weeks since Frankie first started treatment, but the 3-week treatment cycle is now the new normal for the next few months. We are trying to get used to It. On Tuesday night, Val and Kirk flew in from Santa Barbara to join Frankie in Houston this week. Between Wednesday and Thursday, Frankie had labs, her port placed (so all infusions will now go through the port instead of her PICC line -- the port placement created quite a bit of discomfort but we know it'll be best in the long run), they met Dr. Nair, Frankie's wonderful doctor, and she had her second treatment.

Unfortunately, the standard of care for Frankie's rare form of lymphoma is a really intensive, inpatient chemo regimen: 120 consecutive hours of chemo every 3 weeks for 6 rounds. However, her team at MD Anderson is conducting a clinical trial with a new approach focused on immunotherapy and outpatient chemo, and luckily, Frankie was admitted into the trial. This was a huge relief because her first round of treatment was the 5-day inpatient infusion, and it was so brutal.

On Thursday she received her first immunotherapy infusion. The hope is that the immunotherapy will be a little less hard on Frankie's body than the chemotherapy, especially the intensive chemo treatment she experienced during the first cycle. Frankie will have two cycles (including the one this week) that is just immunotherapy. Then, they will do another PET scan to see how she is responding to the treatment. At that point, they will determine what balance of chemo and immunotherapy she will receive for the following, final 6 cycles. If she is responding well, then it'll be more immunotherapy and less chemo, but either way there will be a mixture of the two.

Although the fam had planned to drive back to Austin on Thursday evening after the treatment, Houston weather had a different plan for them! Val and Kirk got a little taste of Houston weather chaos, so they stayed another night, and drove back to Austin Friday morning. It's been great to have Mom and Dad around, and we had a nice relaxing weekend as a family. Though the immunotherapy side effects seem better than the chemo treatment so far, Frankie is feeling quite tired this weekend and is trying to focus on resting. Frankie continues to show her strength every day, and she is taking this whole experience with such grace.

Finally Home!

Tuesday, May 7, 2024

Hi all! It’s Frankie checking in from HOME. After 10 nights and 11 days in Houston (and 8 of those in the hospital!), Tyler and I were finally able to return home last Friday evening. Though I had to face some difficult post-chemo side effects over the weekend, it felt so much better and easier to do it from the comfort of our apartment. We were reunited with our dog, Olive, who doesn’t understand why she can’t give “Mama” kisses while I go through treatment, but is the best companion while we spend a lot of time at home right now :) Each day since we returned home, I’ve felt a little stronger and more energetic and the nausea has subsided. I have started walking each day as my way to get out of the apartment and have made it a little game with myself to see if I can go a little further each day — I hit 1.6 miles today! As someone who greatly misses my daily workouts, it feels so good to move my body. I will continue to see what exercise my body can handle since it’s always been such an important thing for my mental health — which I need more than ever right now. I even felt up for trying to work yesterday and today, and honestly it felt really good to use my brain and have some normalcy and routine in my day. I won’t be going into the office during my treatment to limit exposure to any kind of infection, but thankfully in this post-COVID world, I am able to do my job just the same from home. Everyone at work has been so incredibly supportive — I really do feel so grateful for yet another community helping me during this difficult time. My personal chef, Tyler, has been cooking us delicious, healthy, and hearty meals to keep meat on my bones. I can almost feel my body saying thank you for each of those meals and am so appreciative for my rock helping me in yet another way. And lastly, I am so honored and appreciative of all the cards, packages, and deliveries we have received since we’ve returned home. Each one has put a smile on my face and given me a little more hope and strength. Thank you all from the bottom of my heart for all of the support — I truly couldn’t do this without you <3 For now, I’m going to appreciate my “new normal” at home until we head back to MD Anderson on the 15th…much love.

Notes on the pictures included:

1. Smiling on the final day of my 120-hour chemo treatment while on a walk around the block with my bags

2. Happily getting discharged from the hospital!

3. My two walking buddies on the path by the lake in Austin

4. Our new nightly routine: Nurse Tyler flushes my PICC line with saline to avoid infections