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!