Colon Cancer Awareness Month

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Amanda and Eleanor, Easter Sunday 2015, Chevy Chase, Md.

During Amanda’s hospital stay in December, Medscape published an online documentary about young adults with colorectal cancer. The documentary featured Amanda and another young cancer patient, Wyatt (who passed away about a month before Amanda). Initially, we only saw the first two episodes and wondered about the conclusion.

A few weeks ago, I noticed the third episode, “Hit It With Everything We’ve Got,” was online. Maybe the video was available earlier and we missed it, but this installment captures the devastating effect colon cancer has on young, unsuspecting adults. One day you have other plans and dreams, as Amanda and I did, and the next day you’re scheduling appointments with oncologists and surgeons. Amanda’s interview for the finale is very difficult to watch.

Today’s the first day of March, which is Colon Cancer Awareness Month. And, Amanda participated in the Medscape documentary to raise awareness about the surge in colorectal cancer cases affecting young adults–so, with links to the Colon Cancer Alliance and other resources, here’s what you should know or do:

As noted by the Colon Cancer Alliance, “Only a medical professional can determine the cause of your symptoms. … It is important not to wait before seeing a doctor. Early detection can save your life.”

(This blog post is written by Amanda’s husband, Charles)

Amanda Lee (Bensen) Fiegl, beloved wife, mother, daughter, and friend has died at 37

“But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles…” Isaiah 40:31

amanda-152-52-5763325This is the verse that has been in my head since my visit with Amanda a little over two weeks ago. She was waiting on the Lord with such incredible strength and grace and, while cancer stole her physical strength, I know that she has now mounted up with wings like an eagle. In her words, she now will be continually present in the Light, where there is no pain or fear. While this loss has left so many of us heartbroken, there is comfort in knowing, as she reminded me when I was walking out the door of her hospice room, that this goodbye is not forever. In dying, as in living, she amazed me with her calm wisdom. Amanda lived, loved, and experienced more in her 37 years than many twice that age. And, as many of you know, touched the lives of so many. She will be so very, very missed.

Amanda spent her final days in the hospice center with her family where hospice staff was able to keep her comfortable.

Please keep Charles and their daughter Eleanor; her parents Craig and Deb; her brother Ben and his wife Ilse and their family; her in-laws Len and Nora; and all her family and friends in your prayers.

A funeral service to celebrate Amanda’s life will be held at All Saints Church on Sunday, January 15, at 3:30 PM. A viewing also will precede the service in the church Bride’s Room starting at 2:30 PM. The address there is 3 Chevy Chase Circle Chevy Chase, MD 20815.

Her parents will also hold a memorial service for her in Vermont. Details will be forthcoming.

A special final note from Charles who wants to thank all of you who sent messages and prayers.

“Over the last week, I’ve read many of the social media posts and emails you’ve sent to her aloud (at times with great emotion and tears). Your words are wonderful remembrances and I’ll cherish them always.”

(This post was written by our dear friend, Courtney). 

On Reading, Books, and The Last Battle

Of the many sad things about Amanda dying, one of the cruelest is she can no longer read.

Amanda loves to read. Her parents will tell you that Amanda basically taught herself how to read when she’d play phonics records and practiced sounding out words. At a young age, her mom would buy her a book from a store in Burlington and she’d finish it by the time the car pulled into their driveway 45 minutes or so away.

The bookshelves in her room back in Cambridge, Vermont, and our home in Silver Spring are filled with many of her favorites. There’s too many to list here, but when we were dating she encouraged me to read Tolstoy’s “Anna Karenina.” It’s the best novel I’ve ever read.

So as I thought about how Amanda can no longer enjoy the pleasure of a book, I read to her some poems from Mary Oliver (a friend had given her the book of poems “Felicity” on a recent visit). We also finished listening to a recording of Lewis’ “The Last Battle.” Amanda had listened to the Narnia books during her recent hospital stay. She discussed with a friend, the same one who gave her Oliver’s poems, about how she always felt a bit jealous of Reepicheep when the little heroic mouse chooses to go to Aslan’s country in “The Voyage of the Dawn Treader.”

We do see Reepicheep again at the end of The Last Battle as Aslan leads the characters back to the one true Narnia. The book ends:

And as He spoke He no longer looked to them like a lion; but the things that began to happen after that were so great and beautiful that I cannot write them. And for us this is the end of all the stories, and we can most truly say that they all lived happily ever after. But for them it was only the beginning of the real story. All their life in this world and all their adventures in Narnia had only been the cover and the title page: now at last they were beginning Chapter One of the Great Story, which no one on earth has read: which goes on for ever: in which every chapter is better than the one before.

(This blog post is written and posted by Amanda’s husband, Charles).

Goodbyes

bedside-tableAs of this writing, Amanda is continuing her care at the hospice’s in-patient facility. The doctors and nurses are working to keep her comfortable. The hospice staff makes adjustments to manage her pain and nausea on a daily basis.

Amanda has had several visitors and phone calls over the last few days. She’s enjoyed reminiscing about her childhood, college days, and professional career. At times, her energy wanes and brief conversations end as she nods off to sleep. Other conversations are more in-depth and filled with laughter or tears.

Last night, we discussed the anger, sorrow, and sadness expressed by those who love her. Those feelings are real, she said. But during her goodbyes, there is this constant piece of advice Amanda gives to family and friends as they grieve: Open your heart to God.

This blog entry was written by Amanda’s husband, Charles.

Lessons in Patience

rose-and-juiceI don’t understand how I’m supposed to feel when I am dying. Here I am in hospice. Doctors say I have days, maybe a week or so left. I feel very weak. I’m existing only on liquids. But generally, I feel fine. Like this could go on for months, which I hope it doesn’t. It’s rather tedious.

It’s a gift I suppose to have the opportunity to say goodbye to so many close family and friends one-by-one, but when that’s all done then what? I pray most nights not to wake up, for a peaceful nontraumatic ending. Those around me will know where I have gone.

In the meantime, I’m finding the simplest of pleasures in what is allowed for me. The impossible brightness of a fresh pink rose on a gloomy morning. The sweetness of a glass of orange juice. The fierce sincerity of an old friend’s final hug. The thousand dots and dashes of Morse code that run unspoken in a single glance between husband and wife.

Why Amanda is Dying

(With Amanda’s permission, this blog post is written and posted by her husband Charles.)

Until recently, Amanda approached her cancer with fight. And, if the fight was a video game, Amanda was in full attack mode against a foe. If the fight was a soccer match, Amanda’s team played positively, with three attackers up top, midfielders constantly pressuring the ball, and defenders holding a high line with discipline. Our hope and prayers during her fight focused on recovery and cure. Her body endured multiple rounds of chemotherapy treatments and scars and wounds from four surgeries. But despite the fight, her current prognosis leaves her with a few weeks left to live. She cannot eat and digest food. Her wounds seep fluid constantly. Her liver is failing. She is in constant pain. She is dying.

The truth is patients with cancer do die. Even with prayer and the best treatments available, cancer patients die. At the same time, there also are cancer patients who go on to live cancer-free lives. We all know family members and friends, those we’ve prayed for, who have lived long after receiving a cancer diagnosis. For many, life or death after that diagnosis depends on the type of cancer, if it’s contained or metastasized to other organs, the treatments pursued, etc.

For the last 21 months, I did not think Amanda would die from cancer. We faithfully prayed she’d live. She had an intercessory prayer service to heal her body. Up until a week or so ago, we also had other treatment options to extend her life when current therapies or surgery failed. When doctors told me she was dying, I felt disbelief along with the feelings of great sorrow and sadness even though I’ve always known that cancer does take the lives of hundreds of thousands of Americans every year.

I’ve now accepted Amanda’s prognosis. It makes cruel sense to me given the colon cancer diagnosis and what she’s been through. Amanda’s colon cancer and tumor type, one that’s rare and dangerous, were first discovered in April 2015. At the time she had suffered from severe abdominal pain, which doctors thought was caused by an ovarian cyst, and had exploratory surgery to address what was an adhesion between her colon and abdominal wall. Following that procedure, she had a colonoscopy that the gastroenterologist could not complete because a massive tumor blocked a portion of her transverse colon. The cancer had metastasized and other procedures followed, including HIPEC surgery in January 2016 to remove tumors in her peritoneal tissue and other organs. This surgery was pursued with curative intent but we knew the outcomes for patients opting for the surgery were mixed. A clinical study showed the median survival rate following HIPEC was nearly two years. For Amanda, she enjoyed six months of having no evidence of disease (N.E.D.) before learning her cancer was back.

There now are several tumors in her abdomen, including one in particular that appears to be killing her. You can touch her belly and feel a hard mass beneath the skin. This tumor, and maybe others, has shutdown her bowels and sends pain shooting from her abdomen to her back constantly. Her liver is not functioning, so any fluid she drinks gets absorbed in her tissue and has caused extreme edema in her legs. Any nutrition she consumes, including via IV, is not being processed by her body but now feeds and grows the cancer. Before Amanda entered hospice, we pressed her doctors on other treatments and surgeries. Even hours after her most recent surgery, Amanda was in the ICU asking the lead surgeon if an innovative procedure that shoots vaporized chemo in the patient’s abdomen could be beneficial. The surgeon’s response: I’m sorry, it would not help.

I could further list the different chemotherapy drugs and the number of chemo rounds Amanda has received. And, I could recount the days in the hospital and invaluable nursing care. Several friends and family also have provided solicited and unsolicited advice in various forms; we’ve politely ignored some but not all when we thought alternatives would improve her outcome. Every medical decision and every prayer has been made with hopes of a cure. But still Amanda is dying.

Colon cancer is the simple clinical response to why Amanda is dying. There is another answer. It’s an answer I cannot comprehend and my inability to understand is excruciating.

But as I think and recall Amanda’s life before her colon cancer diagnosis, my thought is that she might be dying so she will once again be free of cancer. And, as I think about my wife finally being cancer free, without all the nausea and pain on a day not too far away, I know we will soon rejoice and will be glad.