It has been 566 days since Dad was diagnosed with cancer. If you sat with some of the medical experts we’ve met or read the blogs/articles we’ve read along the way, they would tell you that life expectancy of a cholangiocarcinoma patient upon diagnosis usually ranges from 3-6 months. But the last 1 year, 6 months, and 17 days (and counting) has been a journey, a struggle, a blessing, a blast, and a whirlwind all rolled up into one.
I apologize for not having posted for quite some time. 2 months after Dad’s diagnosis, I started at a new job, and as things got busier at work, my dad’s health was stable and treatment continued normally for the course of the next year. So needless to say, I have plenty to share since my last post!
In August, we hosted our first fundraiser for Stand Up 2 Cancer. It was in the form of a mini-concert and the kids and I threw together a set of songs ranging from Bruno Mars to The Beatles to Journey to Sara Bareilles. My dad was going to join us for the songs he knew, but he decided at the last minute that he’d rather play with us the entire time!
The few months after that, I began planning a surprise trip to celebrate my parents’ 35th wedding anniversary. My dad had mentioned to me how he really wanted to visit Universal Studios in LA again. It had been 15 years or so since we’d last gone. Almost the entire family got to share in a weekend of celebration. We spent some time at the beach, hired a private chef for a 5 course family dinner, and finished off the weekend by experiencing Universal Studios in the best way possible… with the VIP tour!
My parents impressed us all by riding almost every single ride with the rest of us! They only didn’t ride the last two because it had been a long day and Dad was exhausted, but they rode all the big ones! It was such great fun and since we were escorted for the entire day, we got to share every bit of it together as a family.
I highly recommend the VIP tour, especially when you have a big party of 12-25 people. And I’d be doing you a great disservice if I didn’t also recommend you ask for Heather as your tour guide. She was PHENOMENAL!! Team Heather! She was also coerced into being our videographer for a mini movie my brother insisted on creating on the set of War of the Worlds.
Shortly after all the fun and excitement of our mini family vacation, it was time for the holidays! My brother DJ, his wife Corinna, and their daughter Summer were packing up and getting ready for their new adventures in Houston and I also moved to a new place closer to my offices, where I hosted our joint Texas-themed Christmas and going away party. It was great to end the year with the family, good food, and (for some of us) too much of “Auntie Gemma’s Sexy Texas Tea”.
Since then it’s felt like the new year has been spent as a much needed recovery period from the last six months! All the kids are back in school, DJ and family are in Texas, and the rest of us are back to work. And Dad continues with his chemo treatment.
In the last few weeks, Dad’s edema in his feet has gotten worse, which makes walking very difficult and painful. Because of the effect this cancer has on his liver, his body is unable to flush out these fluids normally, so they remain in his body. When he wakes up in the morning after hours of being off his feet, the swelling appears to go down, but as soon as he stands up, the water rushes down into his feet and legs. His legs feel extremely heavy, and simple things like getting in and out of the car have been hard.
His blood pressure has also been extremely low and his blood sugar has been extremely high, and combined with the edema, the normal things like eating and drinking are conflicting with his ailments. The low blood pressure requires him to have more salt, the high blood sugar is making him very thirsty, and salt and water are making the edema worse. As you can imagine, it’s been quite a dance trying to get everything under control.
After 15 months of chemo, it’s beginning to look like the cancer is building a tolerance to the drugs and Dad’s body is responding less to the treatment for now. Our oncologist will continue to monitor my dad’s lab results as we move forward with chemo, and we’ll consider making changes depending on how things progress. The treatment plan Dad is currently on is the most aggressive “chemo cocktail” for this type of cancer. If we switch to different drugs, they will likely be less effective and opens up the possibility of new and different side effects which is why Dad elected to keep on track with the current plan.
I will continue to post updates in the coming weeks, but please continue sending your prayers for my dad. It is very much appreciated!