Home Stretch

When we received Derek's cancer diagnosis in late December and learned that the tumor in his pancreas was borderline to non-resectable, we made a conscious choice to stay positive and believe that Derek could beat pancreatic cancer. During those long, winter months, as Derek fought his way through his grueling chemotherapy treatments, rather than letting the statistics drag us down, we believed that the chemo would do enough to get Derek to surgery. Once surgery became a real possibility, rather than panic that it might be unsuccessful, we believed that surgery would lead to a complete tumor resection. Today, with a successful surgery behind us, rather than worry about recurrence, we believe that Derek will soon be cured of his disease. Who's to say exactly how we made it to this point, but some combination of prayer, attitude and luck have led us to the home stretch for BigDFaust.

Despite some very minor complications, Derek returned home from the University of Chicago on August 26th, nine days after his surgery. Although Derek required a wound vac to drain an infection from his incision site, nothing has slowed him down. Pushing himself to walk twice a day, Derek's stamina quickly improved to the point where he now walks several hours each day. Using an online calendar, we created a system for our family and a few friends to sign up to accompany Derek on his walks. These walks not only contribute to his physical healing, but they have kept Derek's spirits high so that he does not go completely mad during his otherwise monotonous days at home. A huge thank you to those of you who have come to walk with Derek.

This week, Derek and I went down to the University of Chicago to meet with a radiation oncologist as well as Dr. K to discuss further treatment. Even though the surgeon successfully removed the entire tumor, additional treatment will reduce any possible recurrence by 50%. The plan is for Derek to go down to the U of C, Monday through Friday, for 5-6 weeks of concurrent chemotherapy and radiation therapy. An oral chemotherapy will treat any microscopic disease throughout the body while targeted radiation therapy will treat the localized area of the pancreas bed to burn off any residual tumor that was left behind. Because of certain technical aspects of the machines used at U of C as well as the collaboration between the radiation oncologist and the surgical team, the doctors recommend that Derek receive radiation at the University of Chicago. Although it may not be ideal to travel to and from Hyde Park five days a week, this is the final step for Derek. After he completes this final round of therapy, Derek will (hopefully) put pancreatic cancer behind him for good!

We are extremely grateful to have reached this point. Deepest thanks to our loving family, caring friends, and supportive colleagues who have gotten us through these challenging months. Our life may never be the same, but we look forward to many celebrations, milestones and joyful days as we look ahead.

The Long Awaited Surgery

Looking back to when we first learned of Derek's pancreatic cancer diagnosis and heard about the grim statistics for a positive outcome, my brother, Jeffrey, reminded us that we had every reason to be hopeful. We chose to ignore the statistics and focus on the fact that Derek was an outlier. His age, overall health, stage of diagnosis and treatment regimen put him in a new category of patients. We told Derek over and over again: "It's not a 0% chance. Someone has to beat this thing. It might as well be you."

Yesterday went better than anyone could have possibly imagined. Despite a treacherous storm that passed through the city as our family and dearest friends traveled down to U of C to join me in the hospital waiting room, the sky brightened and the sun began to shine just as we got the call that the surgeon had moved beyond the initial scope to proceed with the full surgery. One of Derek's biggest fears was that he would awaken to the news that the surgery could not be completed, and so we cheered for this small victory.

Just a few hours after that call, when the doctor paged me from the operating room and said he was coming up to speak with me, my heart dropped. It had only been about four hours, and we were expecting the surgery to last much longer. Preparing myself for news of a partial resection, we found a quiet corner of the waiting room for us to talk. I steadied myself and leaned in closely to hear the doctor explain what had happened.

The doctor began by sharing that Derek's surgery had gone "better than expected." Though a small part of the colon had to be removed and there was considerable blood loss, the tumor was "nowhere near the celiac axis." What had made Derek's case so complicated all along was not even an issue during surgery. After he described the details of the full procedure, he finished with the four words that all families in this situation pray to hear spoken aloud: we got it all.

Although the pathology report will take a full week to receive, we remain hopeful that yesterday's surgery yielded an R0 resection with clean margins. The preliminary results look very good, so they say we should consider the surgery "a win."

My oldest, dearest friend, Becca wrote a beautiful blog post last night about what it was like to be with us to witness the news that the surgery was a success. She captured the emotion far better than I ever could because I was in such a state of disbelief.

We are not out of the woods yet and may never be able to use the term cured, but we feel extremely fortunate to know that Derek's overall prognosis improves now that surgery is behind us. We are humbled by the outpouring of love and support for our family and grateful to have so many of you following along as our journey unfolds. Thank you for lifting us up and helping us believe that Derek will win this battle. After all, someone has to beat this thing. It might as well be him.

Denial and Hope

I recently heard a TED Talk given by a woman named Amanda Bennett, who sadly lost her husband to a rare form of cancer. Something struck me about part of her message. She suggested that we need to think more constructively about a very common, profound and powerful human emotion that often presents itself as denial but turns out to actually be hope.

For weeks, I have been saying that I am living in a state of denial about the next monumental step in our journey. Up until this week, I barely acknowledged that Derek's surgery date was quickly approaching. Friends, family members, and co-workers gently broached the subject by asking us about the details: How much work would we be missing? Would Marcie spend the night at the hospital with Derek or stay at a hotel or go home? What would we tell our children?

The truth is that we still don't have answers to all of those questions yet. Instead of using any of our emotional or mental capacity to wonder or waver or worry, we choose to wait. We will figure out what is right when the time is right.

Is this denial? I don't think it is. I think it's a deep sense of hope and belief that everything will be ok, because there are absolutely no indications that it won't be.

Derek was diagnosed with Stage 3 pancreatic cancer, without any signs of metastasis. He courageously battled through 12 rounds of grueling chemotherapy. His CA19-9 plummeted from 273 to 128 all the way down to 12.8, a number well within the range of normal. His tumor shrunk enough so that it went from unresectable to resectable. All of this while Derek's appetite and digestion improved, his weight normalized, and his energy returned. Tell me, how can one not have hope with results like that?

This summer, we have had a marvelous month filled with joy, spontaneity, laughter, and most importantly, food! In fact, this summer was as good, if not better, than any other summer we have spent together. Living each day with so much hope that it turned our fear into fortitude, our stress into strength. We are ready for whatever lies in the days ahead. We are not in denial; we are just filled with hope.

Anyone who is reading who wants to be updated on the day of surgery and the days that follow, please join our private text group by texting @BigDFaust to 81010. Our family has also asked that their friends and colleagues join so that all communication comes directly from us.

Thank you to our incredible support system. To our parents, siblings, relatives, dearest friends, and trusted colleagues, we are grateful to all of you. We look forward to sharing an update after Derek's surgery has been completed.

Counting

When I was growing up, like many kids in my community, I spent my summers away from home at an overnight camp. I can remember the exuberance I felt each summer on the first day of camp knowing that weeks of laughter, silliness, and friendship stretched out before me with no end in sight. But inevitably, after weeks of pure fun and countless memories made with my friends, that last day of camp would soon be upon us, and when sadness would seep into our final days together, our counselors would remind us: "Don't count the days. Make the days count." It's been over 20 years since I was a camper myself, yet these words have stayed with me all this time. Our oldest daughter will be leaving this weekend for her first summer away at camp, and I am sure she will hear that same sentiment while she is there...

Make the days count.

Yesterday, we went down to the University of Chicago so that Derek could get new scans taken of his tumor. Following the imaging, we were able to meet with Dr. M, Derek's surgeon. While we do not have official results from the scans quite yet, Dr. M reported that the scans looked even better than the scans from two months ago, which means that we will continue with the game plan of removing the tumor. A date has been set for August 18th.

The procedure that Derek will need is called a distal pancreatectomy and splenectomy with a possible need for the Appleby procedure, which would include vascular reconstruction. Dr. M noted that the encroachment of the tumor near the celiac artery has regressed significantly, and he feels confident that he will be able to remove the tumor. At this point, we are hoping for what the surgeon calls an R0 resection, a surgery that achieves microscopically negative margins surrounding the tumor. We have learned that R0 gives patients the best possible outcome, while R1 and R2 are considered palliative because cancer cells would be left behind. We are hopeful that Dr. M is able to complete the surgery without complications and that he achieves an R0 resection.

Dr. M had remembered a conversation we had back in May about our hope of scheduling the surgery on a date after our oldest daughter returns from overnight camp. We explained that if possible, we wanted to give our daughter the chance of seeing her dad relatively healthy before he is weakened by surgery. After our last visit, Dr. M went ahead and set the surgery for nearly one week after our daughter's return home. As an added bonus, the surgery has been set for August 18th, and in the Jewish faith, the number 18 holds significance. We take comfort in knowing that Derek's surgery will be on the 18th, a symbol of life and living.

Now that the date has been set, we know the exact number of days that stand between Derek's seemingly healthy life and his surgery. But we won't be counting down the days until surgery. Once a countdown begins, it's easy to become detached from the present and miss important moments in life. Throughout this month, rather than counting the days, we will be making the days count.

We probably won't be posting another blog post for several weeks, but we welcome anyone to join our text group by texting @BigDFaust to 81010. We will be using this feature for updates leading up to surgery, on the day of surgery and the days following.

Thank you for all of your positive thoughts, love and support. We're one step closer...

xoxo

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