Reality Check

Lately, we have experienced many bits of good news. We brightened each time the CA19-9 dropped, we cheered when the scans showed that the tumor was shrinking, we celebrated when we learned that Derek became a surgical candidate. For weeks, we've been following the "Get to Surgery" plan, and with all of the good news, it's been easy to lose sight of the magnitude of it all. Yesterday, we got a hefty dose of reality that quite honestly hit us like a ton of bricks.

After weeks of anticipation, we finally had a second meeting with Dr. M at U of C to learn about his approach to Derek's surgery. He spent a considerable amount of time drawing us sketches and showing us scans to help us fully comprehend what Derek's surgery could entail. We learned that the surgery must be done in phases where Dr. M would go in, explore, and then biopsy the tissue surrounding the tumor before proceeding. Hopefully, he can perform a tumor resection that does not leave microscopic cells behind, but he may go in and have to turn back because the risk could be too great. Or he may proceed with the resection yet unavoidably leave tumor tissue or microscopic cells behind. He told us that there are no guarantees. We just won't know until he goes in and performs the surgery.

After an hour of tumor talk and surgery speak with Dr. M, we were reminded that this is Pancreatic Cancer we're dealing with. Like diabetes and heart disease, the surgeon explained that pancreatic cancer patients who present just like Derek are rarely cured; they're treated. The silver lining here is that Derek has gotten the best response from the chemo that we could have hoped for, and the fact that surgery is even an option gives him a greater chance of a favorable outcome...an outcome that hopefully gives us lots of time. Time makes way for the discovery of more treatments; treatments that will continue to give us more time; more time for the discovery of newer treatments and so on. Time is the golden ticket here.

After the appointment, I clung to some of the surgeon's parting words: "You have reasons for hope." It reminded me of what my brother, Jeffrey, told us in the very beginning about having every reason to be hopeful. We feel lucky to be in a position where we still have so much to hope for now that Derek will be heading into surgery. But it's still scary as hell.

We left the appointment in the haze of reality, forced to face the fact that there is still a long, uncertain road ahead of us. Later last night, our three children laughed and sang and danced in our living room, untouched by the curveball life has thrown our way. They were the perfect distraction from a difficult day, and before I knew it, we were laughing, singing and dancing again too.

Deepest thanks to all who are following our journey. You lift us up with hope, optimism and love. xoxo

Surgical Candidate

For months, we have waited to hear the news that we heard today: Derek is officially a surgical candidate. At Derek's initial diagnosis in January, Dr. K at the University of Chicago categorized Derek's tumor as borderline resectable to non-resectable because it had invaded a blood vessel known as the celiac artery. Dr. K's goal was to blast Derek with eight rounds of a chemotherapy regimen called Folfirinox to shrink the tumor enough so that it might become resectable. In collaboration with Dr. A at the Kellogg Center in Highland Park, our oncology team kept focused on one goal: provide Derek with as much chemotherapy as his body could tolerate to get him to surgery. Today, we received the best news we could possibly hope for in Derek's battle against pancreatic cancer.

As we waited to see Dr. K today, optimism and hope permeated the small exam room. We already knew that Derek's CA19-9 tumor marker was registering within a normal range and a surgeon we met with last week at Memorial Sloan Kettering Cancer Center in New York told us that he felt Derek's tumor could be removed with surgery. All we needed now was confirmation that the team at the University of Chicago concurred with the surgeon at Sloan Kettering.

At a past appointment, Dr. K compared Derek's tumor to a mass of aluminum cans. No matter how much you compact the cans, they will never fully disappear. This is exactly the case with the tumor cells that still exist in Derek's pancreas. Though the tumor can still be seen on his scans, Dr. K was giddy with excitement as she spoke of Derek's dramatic response to the Folfirinox chemotherapy. The chemo has made such a significant difference in the size of Derek's tumor that it is now considered a resectable tumor, a result that is only achieved by a small percentage of patients.

Because Derek is able to tolerate the Folfirinox so well, Dr. K has recommended that beginning tomorrow, Derek continue with an additional 2-4 rounds of chemotherapy. We plan to meet with the surgeon at the University of Chicago as early as next week to learn the specific approach he recommends for the removal of Derek's tumor. If all goes well, we anticipate surgery at the end of the summer.

While our journey is far from over, we recognize that we must fight many small battles to win a much larger war. Today, we celebrate a small victory in knowing that Derek's tumor is now resectable. Our goal from the beginning was to get Derek to surgery, and we are beyond grateful to have reached this milestone.

Thank you for the love, support and encouragement so many have shown us these past few months. Though at times the winter felt impossibly long, we welcome the hope of spring and the promise of a successful surgery this summer. Once we have met with the surgeon, we will share more details with everyone.

Planning

Life isn’t about waiting for the storm to pass… 
It’s about learning to dance in the rain.

-Vivian Greene

On Tuesday, January 5th, our world was forever changed when Derek's oncologist, Dr. K, shared with us the first steps in our pancreatic cancer journey. That meeting turned our entire world upside down, and as we wandered out of the exam room with tear-stained cheeks, I turned to Derek and said, "We better go to Disney World." 

Derek and I last traveled to Disney World five years ago when our first two children were quite small. Due to the young ages of our children, they have no real memories of ever being at Disney World. Our trip was also cut short by the sudden, tragic loss of Derek's Aunt Judy. Ever since that last visit to Disney, Derek has talked about a "do over", but we decided it made sense to wait until our youngest child was old enough to remember her Disney visit.

When you hear the words, "You have cancer," you don't wait for Disney. 

Of all the challenges we have encountered these last several months, I think the inability to plan into the distant future is the most difficult to accept. With cancer, you cannot plan in the same way that you once did. Rather than planning for the days along the horizon; you plan for the days at your doorstep. 

In just a few short weeks, while battling exhausting side-effects from his chemotherapy regimine, Derek managed to plan a full Disney vacation that he kept as a complete surprise from our three children. As soon as we arrived in Orlando, Florida, the stars aligned, providing us with perfect weather, short lines at the theme parks and a completely symptom-free week for Derek. Our Disney vacation was absolutely perfect and truly gave us a week's worth of memories that will last us a lifetime.

Upon our return from Disney, as Derek geared up for his seventh round of chemotherapy, we received the most encouraging news we have heard in months: Derek's CA19-9 is now at 18.9, which is considered within a healthy range! This number, which measures the tumor-associated antigens released into the blood by pancreatic tumor cells, indicates that Derek may have a greater chance of getting to surgery.

This month will tell us a lot about the next steps for Derek in his cancer-crushing journey. Beginning on Tuesday, Derek will (hopefully) head into his eighth round of chemotherapy. Please send positive vibes for a high enough platelet count to keep Derek's currently scheduled chemo infusion. Following chemo, Derek will get rescanned before we head to Sloan Kettering in New York City for a surgical consultation. After our meeting at Sloan Kettering, we will have a restaging meeting back at University of Chicago with Dr. K who will share with us her recommendation on the next phase of treatment and whether or not her team recommends surgery for Derek. 

With so many new pieces of information forthcoming, I will do my best to keep everyone updated. Anyone (family, friends, acquaintances, strangers) is welcome to join our text group by texting @BigDFaust to 81010. We update the text group much more frequently than the blog.

A huge, overdue thank you to our friends and families who have supported us throughout these last few months. We could never get through any of this without you!!! xoxo