One Year

One year ago today, we announced to the world that Derek had received a cancer diagnosis that would change our lives forever. An adenocarcinoma tumor in the tail of his pancreas was thought by many to be inoperable, but after 6 months of aggressive chemotherapy, his tumor was completely resected this past August. Once he recovered from surgery, Derek began oral chemotherapy and radiation therapy on a 5-day per week schedule at the University of Chicago, which he completed the day before Thanksgiving. Ever since we have been living our lives "normally" once again.

But life after cancer is never really normal. In a sense, it's equally as scary, just in a different way. Aches, pains and belly discomfort are sensations that we used to disregard almost immediately, but now the mere mention of any of these symptoms from Derek will send an involuntary shiver up my spine. That looming question of "is it back?" will always be there. We must accept that worry exists and then let the worry float on by without giving it too much time or attention. To be completely honest, though, maintaining equanimity in the face of uncertainty continues to be one of my greatest personal challenges.

Lately, we have noticed that our life is filled with many anniversaries that we think about and sometimes cherish even though we wish there was no cause for celebration. Today is one of those days. December 30th will forever be the day that Derek received his cancer diagnosis. Yet today we celebrate the fact that Derek is feeling healthy and not in need of any treatment at this time. Moving forward, there will be dates on the calendar or annual events that will remind us of where we were during Derek's yearlong battle with pancreatic cancer. We will choose to honor and accept the past without allowing it to cloud the beauty of today.

Many people have mentioned that 2016 was a terrible year and that we must be eager to move on to 2017. Funny enough, I have responded that I did not think 2016 was quite so bad. The Cubs won the World Series for goodness sake! How bad could it have been!? 2016 may have challenged us in immense ways, but it also taught us incredibly powerful lessons about life, relationships, and healing. Had the year ended with a different outcome for Derek, perhaps we would feel differently about 2016, but I am grateful that we can look back at the year with more laughter than tears. In the video below, I was able to capture moments from the entire year, and I think anyone would agree that it tells a very hopeful, optimistic story where cancer does not play the central role.

When I began this blog one year ago, I told Derek that I wanted to share our journey in the form of a blog for three reasons:

1. Catharsis
2. For my children to look back on a part of our family's history that they will likely not remember
3. To openly share our story so others can learn from our experience

I am so touched and grateful to those of you who have taken the time to read our blog. When people compliment me on my writing, I often respond by saying that one's writing appears more eloquent when we have something important to write about. I hope that this blog inspires someone else to tell their story (cancer or otherwise) so that we can support one another and learn from one another as we navigate life's obstacles and blessings. 

For now, I've decided that I am going to take a hiatus from this blog and pray that I won't need it anytime soon. Though we cannot be foolish enough to believe that our story is finished just yet, we remain hopeful that the subsequent chapters will be filled with much more joy than pain. 

Wishing you a very happy, HEALTHY, peaceful 2017!

xoxo

Happy Birthday, BigDFaust!

Today is a special day for us. Not only is it Derek's 42nd birthday; today also marks one year since Derek first began experiencing the symptoms of pancreatic cancer. When Derek turned 41, if someone had told us that by Derek's next birthday he would be in the home stretch of treatment for stage III pancreatic cancer, that the Chicago Cubs had won the World Series, and that Donald Trump had been elected president, we would have thought you were absolutely crazy. Apparently, a lot can happen in a year.

One Year Ago

Exactly one year ago this weekend, Derek and I were spending a quick weekend away in Florida when Derek felt a little "off" following his birthday dinner. Little did we know that the sour stomach, heartburn and back pain that he would experience daily for the next six weeks would ultimately land him in the emergency room and lead to his cancer diagnosis. In a sense, those persistent symptoms were a blessing. Without them, we would have never known Derek was sick and his tumor could have metastasized to other organs. We feel extremely lucky that Derek's symptoms presented themselves when they did. For so many others, this silent disease is discovered much too late.


Ironically, while we celebrate another year of life for Derek, the world prepares to celebrate World Pancreatic Cancer Day, which will take place next week on November 17th. In celebration of Derek's inspiring battle with cancer, please consider supporting an organization that funds research for Pancreatic Cancer. Contributions from these organizations played a major role in funding research that led to Derek's treatment. Imagine a day when pancreatic cancer is detected early enough that survival rates improve drastically. I hope our story and the awareness it has brought to others will pave the way for more stories like Derek's. 

Today, when Derek blows out the candles on his birthday cake, I think we can all imagine what he will wish for. It's probably the same thing he and I would wish for all of you: health and happiness, love and support, and appreciation for the good in the world. Please join me in wishing a very happy birthday to BigDFaust! We feel so grateful to be celebrating another birthday today, and we look forward to celebrating many, many more. 

Reasons to Celebrate

I love reasons to celebrate, although some days are easier than others for us to find reasons for celebration. Today, being our youngest daughter's birthday as well as the Jewish holiday of Rosh Hashana, we are surrounded by reminders to stop and celebrate life's beauty. In honor of our daughter's birthday, we celebrate the day four years ago when our family became complete, and we celebrate another year of her life that we have all spent together. In honor of Rosh Hashana, we celebrate the sweetness of life and the hope that next year will be a healthy year for Derek. 

Today is certainly a day to celebrate.

Lately, while Derek embraces his newfound independence post-surgery, he will often encounter many people who know of his story. It is not uncommon for Derek to find himself greeted with hugs, smiles, good wishes, and prayers, often by people he does not even know. Many times, Derek becomes overwhelmed and bashful by this extra attention, but I feel pure gratitude. These moments remind me of the goodness of the people that surround us during difficult and uncertain times, and I feel honored by the outpouring of love and support that has fueled our family since last January.

This morning in synagogue, while Derek accepted the good wishes from several of our fellow congregants, I remembered a message sent to me by one of my colleagues just days after Derek's diagnosis: "God WILL be with you on this journey. In the quiet of the night and in the faces of the people you meet--or even a song you hear on the radio! As scary as it is, the journey can also be an amazing experience."

She was right. What an amazing experience; one that I would not even change. The relationships that we have with family and friends have become richer and more meaningful than they ever could have been without the impetus of a cancer diagnosis. How incredibly lucky to feel the love we have felt and to see the best in those around us. 

Today is certainly a day for us all to celebrate. Thank you, truly, to those of you who have enriched our lives in immeasurable ways. We are so grateful. 

xoxo

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