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

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

Minor Setback

This morning, BigD headed to his chemo appointment ready to take on Round 6 like a champ. He strolled into the Cancer Center like Norm from Cheers, smiling at all of the nurses and staff members, greeting each of them on a first name basis. If it was not for the fact that he is being treated for cancer, you might say that Derek actually enjoys going in for treatment.

For the first five rounds of chemotherapy, we have been incredibly fortunate that Derek could get the full chemo dose to attack his cancer. While his platelet levels had always been questionably low, our aggressive oncologist believes in forging ahead with the full chemo dose as long as the platelet levels do not drop below the 75-count threshold. Today, unfortunately, the number dipped too low to safely administer chemotherapy, and thus, the team decided to cancel treatment to give Derek time for his platelet count to rise.

With spring break plans on the horizon, the team adjusted the schedule to allow Derek to get his chemo the day after we return from spring break, which turns out to be a blessing in disguise. Now, he will travel without the dreaded chemo hangover and get to enjoy some rest and relaxation with our family. We feel confident that after a week off, Derek's platelet count will improve, and he will be ready to head back into battle for his sixth chemo round later next week.

Following this very minor setback today, we received some incredibly promising news with regards to the CA 19-9 tumor marker which is tested prior to each of his treatments. The CA 19-9 measures tumor-associated antigens released into the blood by pancreatic tumor cells. A healthy range is somewhere between 0-37, and we are thrilled to announce that Derek's numbers dropped within the last two weeks from 128 to 67.8! This is significant because it tells us that Derek's treatment is working!

Funny how one shrinking number can be a total disappointment, yet another can be a huge celebration. Even though the treatment schedule was slightly derailed this week, looking ahead, we believe that this unexpected week of rest will be good for Derek's mind, body and spirit. Every good fighter needs a physical and mental break, and we know BigD will come back even stronger next week; ready to take on Round 6!

Thanks for sending us your positive thoughts and platelet-rising vibes!

Stay the Course

Thank You, Aronson Team, for the shirts!

Today did not go exactly as we had expected, but then again, neither have these past two months. The range of emotions that we experienced seemed to mimic today's winter storm. This morning, fear and frustration pelted us along with the wind and snow, but as the winds died down tonight and the skies cleared, we were overcome with a deep sense of relief.

At 9:00 this morning, we arrived at the Wisconsin Medical College Cancer Center to meet with a surgeon specializing in pancreas tumor resections and vascular reconstruction. We expected the surgeon to tell us that Derek's treatment was working and that surgery would be on the horizon. Within minutes, we were devastated to learn that this surgeon was not convinced that Derek's treatment was working well enough at this point to discuss the possibility of surgery. He acknowledged that Derek's tumor has had a mixed response to the current chemotherapy. Though the tumor was shrinking, a tumor marker known as CA-19 was not dropping significantly enough for this surgeon to consider a surgery. We were basically told that we needed to work with the oncologist to consider alternative therapy.

Obviously, this was confusing news for us. Hearing that the tumor was shrinking but that the tumor marker was still elevated had us very worried. A lovely nurse that works with the surgeon at the Wisconsin Medical College told us not to worry and that his opinion was not bad news. We tried to believe her and feeling somewhat deflated, we headed south to the University of Chicago to meet with our lead oncologist, Dr. K.

Though we waited two hours for Dr. K, it was well worth the wait. She greeted us with an enormous hug and a smile. She asked us about our visit to Milwaukee, and when Derek told her that the surgeon was concerned that the chemo was not working, she reminded us that it has only been two months and that the CT scan showed that the tumor was shrinking! Additionally, from a clinical standpoint, Derek's pain has decreased tremendously. Dr. K felt that she had enough evidence to recommend that we stay the course with the current treatment of Folfirinox. This particular combination of drugs is the most aggressive treatment available for pancreatic cancer patients, and in her view, we should give the Folfirinox two more months before making any judgments.

Tonight, we feel confident in Dr. K's recommendation to continue with Derek's current treatment plan. We believe that his tumor will continue to shrink and that surgery will still be in Derek's future. Thank you for the outpouring of love, support, thoughts, and prayers. A friend of mine, who lost his mother-in-law to cancer, reminded me today that no one fights alone. Derek and I could not agree more and are thankful for every one of you for being part of our team.

Re-Scan

Tomorrow is a big day for BigDFaust. This will be the first scan since Derek's treatment began to determine how well the tumor is responding to the chemotherapy. Since January 12th, Derek has undergone four full rounds of Folfirinox. In that time, he has learned to navigate side effects, new eating habits, and patterns of fatigue. Through each round of treatment, Derek's ability to handle the aggressive chemotherapy steadily improved. With more energy, appetite and stamina, Derek completed his fourth round of chemo this week with the positivity he will need leading into his scan tomorrow.

On Tuesday, we will spend the morning in Milwaukee at the Wisconsin Medical College, to meet with Dr. E who will tell us whether or not he would be willing to attempt Derek's surgery. Later that day, we will travel south to the University of Chicago to see Dr. K to follow up on Derek's progress. These meetings will give us new information that will dictate our next steps.

Leading up to this point, Derek has followed the plan and learned to adapt to his new routine. He goes to chemo appointments, hydration appointments, and acupuncture appointments. He anticipates which days he will feel well enough to participate in typical daily activities. He has learned which foods are appetizing and easy to digest and the ones he must avoid. He manages his own side effects from the chemotherapy with various medication combinations. He has truly lived an entirely new life in these past two months, and he has not complained once. His strength is inspirational.

People ask me all the time how we do it, referring to how Derek and I continue working, parenting, and living with his cancer diagnosis. I usually tell them that we have no choice. But the more I think about it, that is not entirely true. While the situation is outside of our control, the way we handle the situation is completely up to us. We choose to keep moving forward and enjoy the little moments along the way. This mindset has led to a peaceful and optimistic outlook on what lies ahead.

Thanks for checking in. Stay tuned for an update next week when we report back on next steps for BigD!

The Glass is Half Full

Earlier this week, Derek learned that he does not carry the gene mutation for BRCA1 or BRCA2. This is a huge victory for us, giving us peace of mind. With Derek's results coming back as negative, it immediately eliminates the burden our children could carry throughout their adult lives.

Yesterday, Derek and I returned to the University of Chicago for the first time since our meeting with Dr. K last month. It's amazing how much life has changed in such a short amount of time. In this last month, Derek has endured two rounds of chemo, adapted his demanding work schedule, and learned how to manage a myriad of side effects with a medley of medications.

When we first learned of Derek's diagnosis as a borderline resectable tumor, we immediately adopted the mantra "get to surgery" to keep ourselves focused on a short-term, attainable goal. With two rounds of chemo down and two to go until the restaging of his cancer, we were advised to set up a surgical consultation to better understand our next steps. We were eager to hear what a gastrointestinal surgeon specializing in pancreatic cancers could tell us about Derek's case.

When we sat down with the surgeon, Dr. M, he began by drawing a picture of Derek's organs on a piece of paper setting up the game plan for Derek. Because Derek's tumor has invaded the celiac artery, it makes his tumor more difficult to remove. He explained that he hoped Derek would be a candidate for something called the Appleby Procedure, which would allow the surgeon to remove the celiac axis, the bottom half of the pancreas and the spleen.

Dr. M shared with Derek that he believes he will get to surgery this spring. He went on to explain that even though he is optimistic, it may be too dangerous to complete the surgery once they go in. You can choose to hear that information in one of two way: surgery is an option or surgery, though an option, may not be completed. We chose to hear the former. We know that some surgeons may not even attempt a surgery, so we left the meeting feeling very encouraged.

We choose to be hopeful. We choose to be optimistic. We choose to believe that Derek will get to surgery.

The Sun Always Rises

If you know me, then you know that I have been suffering from emetophobia since I was a child. 

In high school, on a cruise with my family, both of my brothers came down with the stomach flu. I befriended another girl on the ship just so that I could spend a few nights sleeping over in her cabin to avoid my germ-infested sleeping quarters. In college, I would move out of my sorority house if anyone in my hallway came down with a stomach bug, and post-drinking pukers knew that I was happy to go out to buy them Gatorade or soda crackers, but holding their hair back was never going to happen. Even when I taught elementary school, my students were warned of my "no vomit policy" and somehow, every single student obliged.

As for me, I made it through all of my college years and my three pregnancies without ever breaking my vomit-free streak. I'm pretty sure I even have Jerry Seinfeld beat. The few times I've actually come down with a stomach virus, I have successfully performed a series of breathing exercises that suppressed my queasiness enough to keep my streak alive.

You are probably wondering how on earth I handle the situation if my kids ever get sick. Well, thanks to my amazing husband, in the nine and a half years that I have been a parent, I have completely avoided taking care of my kids when they vomit. Derek has always handled the back-rubbing and the hair holding while I sit on the sidelines offering moral support in the form of hydration, garbage bags, and an occasional load of laundry.

When I learned of Derek's cancer and knew his immune system would be compromised by his chemo treatments, I begged my mother to promise me that even if it was the middle of the night, she would come to my rescue to take care of my sick children so that I could be left to cower in the corner. 

Last night, at 11:30 pm, I was forced to face one of my greatest fears when my little one began vomiting all throughout the night. Somehow, I did it all. The back-rubbing, the hair holding, the carpet cleaning and every load of laundry. I did not call my mother. I did not cower in the corner. I did what I needed to do. This time, Derek stayed on the sidelines for moral support, and even when my emotions got the best of me at the thought of doing this completely on my own, I pulled it together and handled it. 

So, why write a blog post all about my emetophobia? To start, it proved to me that I can do things on my own that I would ordinarily defer to my husband. It also forced me to face one of my greatest fears, which gave me the strength and courage that I will need to face my fears again. And while it was a very long night, I kept telling myself that I would get through it. These things don't last forever. Even when they are scary and sometimes sad, just like night, they will always come to an end. 

This morning, when dawn broke and my little girl came bouncing back to her sweet, happy self, I was reminded that the sun always rises, light always follows darkness, and we can get through anything. No matter what.

New Normal

Derek made it through Round 2 of chemotherapy with greater ease than his first round. Thankfully, his nausea was better controlled, allowing him to continue eating throughout his treatment. In fact, Derek not only completed his second round of chemo this week...he also completed the Holy Trinity tour of fast food restaurants. Having lost nine pounds in under a week during his first round, his doctors urged him to find ways to put weight back on. Desperate times call for desperate measures, and I am happy to report that Derek regained almost all of his weight after indulging in McDonald's cheeseburgers, Wendy's singles, and the Burger King Whopper! 

This past month, we have begun to adapt to our new normal. Certainly, there has been an abundance of doctors' appointments, medication doses and side effects to navigate, but there have also been treasured moments for us to embrace. Derek has had many days at home allowing him to see our kids off to school and even share lunch a few times with our three-year-old daughter. I believe that all of the moments he is collecting at home with our children provide him with the motivation he needs to fight and beat this dreadful disease.

While I would be lying if I said that this is not a frightening experience, at the same time, it has been incredible. To be surrounded by our family and so many friends who will do whatever it takes to support us during this time is amazing. We are still blown away by the support at the Michael's event last week and continue laughing at the many Wax Off Pancreatic Cancer videos created by Derek's friends, especially this creative twist:

We have also been overwhelmed by the donations generated by Team BigDFaust and all of the supporters who will be walking and running in the Rolfe Foundation Dash for Detection on April 17th. Our team organizers are still looking for more participants in the 5k run/walk and will be coordinating transportation to the event. You can access our team link here and "Early Bird" registration at a reduced fee ends on February 12th. Even if you are not able to make the event, please consider making a donation in support of Derek on the team page. Questions about the Dash for Detection can be sent to Matt (mfield75@gmail.com), Stephanie (stephaniefick@gmail.com), or Michael (michaelspector@yahoo.com).

Thank you again and again for all of the love and positive vibes being sent our way. We welcome anyone to join our text group by texting @bigdfaust to 81010 on your mobile device. This is a great way to stay informed about how Derek is doing, while giving everyone an opportunity to send personal messages of love and support directly to Derek. 

Our fingers are crossed that Derek is not hit too hard with side effects this weekend. Thanks for keeping us in your thoughts and wishing us a nice, "normal" week ahead. 

Gratitude

Thanks to Susie, Gayle, Barbara, Nancy, Jen and Flynn!

Tonight, hundreds of friends, family members, colleagues, and community members dined out at Michael's Red Hots in Highland Park to show their support for Derek and our family while raising money for Pancreatic Cancer Research. Derek and I were overwhelmed as we read the texts, emails and Facebook posts that streamed through our phones tonight describing the incredible turnout at Michael's. We want to thank our loving family members, cousins Susie and Jen along with our aunts Nancy, Barbara, and Gayle, for taking the initiative to organize tonight's event. The donations collected by our family alone totaled $4,415! We also want to thank Michael's for generously contributing a portion of the proceeds from their sales this evening to Pancreatic Cancer Research.

While we deeply appreciate every single person who braved the cold weather to come to Michael's to show their support for Derek and our family, we would be remiss if we did not mention how honored we are to be a part of this fundraising effort. Our community truly made a difference tonight. Every single dollar raised could lead to better outcomes for pancreatic cancer patients. We are humbled by the generosity so many have shown and feel immense gratitude for every ounce of hope and positivity being sent our way.

Right now, fear and worry take a backseat to love and support. A night like tonight reminds us to cherish our family and friends who have helped us accept this adventure and embrace the ride. We are overflowing with love, gratitude, and appreciation for everyone who has opened their hearts up to our family. All of the thank-you's in the world will never be enough.

First Day of Chemo

Derek's first day of chemotherapy is officially in the books. He spent today receiving an infusion of Folfirinox, a combination of four chemotherapy agents. As he goes through his chemo cycles, the first day of the chemo regimen will always take place at the hospital as outpatient treatment where he will receive two of the chemo agents. Once the first two agents have been infused, Derek will receive a 46-hour infusion at home, delivered through a pump connected directly to his port. On Day 3, he will return to the hospital so that his pump can be removed. This treatment will be repeated every two weeks for several months.

Derek already got hit with some side effects today. He has experienced stomach cramps, nausea, neuropathy (tingling in his hands) and fatigue. Tonight, thanks to some heavy anti-nausea medications, Derek is able to sleep and stay comfortable. While the side effects certainly make the journey more difficult to bear, we believe that each side effect signifies that the chemo is doing its job to attack his tumor. As we continue down this road, we will focus on the goal of this treatment plan which is to shrink the tumor to get Derek to surgery. This obviously won't be easy, but we believe it is possible!

Thank you for keeping Derek in your thoughts and prayers and for the few dedicated friends who have actually waxed their chests in support of Derek and pancreatic cancer research. Check out the video below created by one of Derek's best friends in the Wax Off Pancreatic Cancer movement. Let's keep it going.

Those Purple Wristbands

(Yiddish) "Ahz mir tracht goot, vet zein goot."

(Translation) "If you think it is good, it is good." -Auntie Rivian

Derek and I have been blown away by the response to the purple wristbands that my aunt, Nancy, ordered for us to share. What began as a simple way for our family and friends to show support for Derek has grown into a fundraising opportunity for pancreatic cancer research that we are proud to endorse. Increased funds toward pancreatic cancer research will make a difference in the treatment options of patients just like Derek, and together, we believe that our community will make a difference in the future of this disease. We hope many of our local friends will join us at Michael's Hot Dogs in Highland Park on January 19th where a portion of the evening's proceeds will be donated to the Pancreatic Cancer Action Network (PanCAN) and the Rolfe Pancreatic Cancer Foundation (Rolfe Foundation). Special thanks to our cousin Susie and aunts Nancy, Barbara, and Gayle for helping coordinate this event.

It's funny how something so small can signify something so big. Those purple wristbands stand for much more than our love for Derek and our goal of increasing the pancreatic cancer survival rate; they symbolize a shared hope that Derek can win this fight! Earlier this week, our visit with Dr. K left us feeling overwhelmed and afraid, but slowly, as we began putting one foot in front of the other, we reclaimed our belief that Derek will beat this disease. As my brother, Jeff, reminded me the other night: "Someone has to beat the odds. So, why not Derek?"

Today, Derek received his port so that chemo can begin on Tuesday. We will try to post an update next week to keep everyone informed of his treatment. Don't forget to join our text group to send good vibes to Derek and receive mini updates by texting @BigDFaust to 81010. Thank you for all of your good wishes and messages of strength! Keep them coming! You make a difference!

A First Step

Taken at the U of C Medical Center

"Beauty is everywhere a very welcome guest." -Goethe

Today, our day began with this incredible piece of art hanging on a wall at the University of Chicago Medical Center. It reminded me to appreciate the beauty that surrounds us.

As we wandered the halls of the hospital, navigating our way from the pathology department to pick up Derek's biopsy slides to the office of a genetic counselor, we saw the beauty in people who stopped to ask if we needed help getting to where we needed to be. Every person we saw today was incredibly kind and helpful, and Derek instantly felt a sense of comfort as we faced the day.

Our first meeting was with a genetic counselor, who shared with us that because of a known gene mutation in one of his aunts, Derek is at an increased risk for carrying the same gene mutation of the BRCA2 gene. We learned that carriers of the BRCA2 gene are at an increased risk for pancreatic cancer along with other cancers such as breast, ovarian, and prostate. Typically, we hear of many women being tested for the BRCA1 and BRCA2 genes, but we were fascinated to learn that this gene can affect men as well. While this information will be incredibly important to the future of our three children, Derek may be eligible for certain medications if he has the gene mutation. We will find out whether or not he is a carrier for BRCA2 in about three weeks.

After our visit with the genetic counselor, we sat down with Dr. K, Derek's oncologist. Dr. K met with a tumor board earlier in the day where Derek's case was presented to a team of experts. As we know, Derek has been diagnosed with an adenocarcinoma tumor in the tail of his pancreas. What makes Derek's case particularly complicated is that his tumor is considered borderline resectable because the tumor is encasing a vessel knowns as the celiac artery. This means that surgery may never be an option for Derek.

Dr. K recommends that Derek begin an extremely agressive chemotherpy regimen in the next two weeks, and thanks to a good partnership with NorthShore Health Systems, he will be able to get his chemo closer to home. Right now, we are hopeful that the treatment will be able to shrink his tumor enough to make him a surgical candidate. In about four months, Dr. K predicts that she will be able to make that determination.

Derek and I will likely travel to some of the nation's top cancer centers that specialize in pancreas cancers for a second and third opinion, but these opinions are related to surgery. The chemo regimen is standard of care for someone with Derek's diagnosis, so we are not in a rush to leave Chicago quite yet.

We want to thank everyone for supporting our family during this time. The positive messages sent to Derek have been incredibly uplifting and will continue to be an important part of his ongoing treatment. If you have not signed up yet, please do so by texting @BigDFaust to 81010.

Finally, I want to say that as difficult as this journey will be, I still believe that it brings out the beauty in everything and everyone. Our children, parents, siblings, and extended family overwhelm us with endless love, compassion and care. Our friends lift us up with their spirit of support and encouragement on a daily, sometimes hourly, basis. Our co-workers cheer us on and remind us that fighting cancer will not define either one of us. How lucky we are to have such a beautiful life together, one that we will not take for granted for a single second.

Feel free to share our blog with others and consider making a donation to any organization that funds pancreatic cancer research.

Thank you, Angie, for this awesome t-shirt!