Introduction:

Pain and New Life

Filet and Cheesecake

December 2007, Julie was getting ready for the office Christmas party, looking very festive in a flowing, wine-red blouse. Simple makeup, deep red lips that I wanted to taste and smear on mine. She wore her dark auburn-brown hair in an A-line bob, the right style to go with those all knowing and flirty brown eyes that she had smitten me with 20 years earlier. I was always proud to go places with her, especially when she was carrying an unborn child.  She was 38 years old, 20 weeks pregnant, and so beautiful.  

We also had a high school concert to attend that night so we were in a bit hurried at the party. Julie enjoyed her filet mignon, but the cheesecake did her in. As we came home that night she began having stabbing upper abdominal pains that bored through to her back like a twisting knife. She was crying and scared, and felt that something was terribly wrong, not just the heartburn she often had in the past.  

It is hard to know when her pancreatic tumor started to grow, perhaps years before. She had had similar pains in the past.  A few months after we were married, she had a knife-like pain in her stomach one evening, but fully recovered after a couple of hours. I might not have remembered if it had not been for the severity, bringing her to tears as she doubled over.  We prayed and I blessed, and soon she felt better. After that, she had occasional typical stomach aches like anyone else, and not much was thought of them. Once gone they were forgotten.  I don’t suspect they were related to her eventual tumor, but I don’t know.  

While living in Mountain Home from 2001-2004 she experienced some clusters of pains over a week or two so we took her to see a colleague of mine. Some tests were done, abdominal X-rays, upper GI studies, and she was diagnosed with a hiatal hernia and gastroesophageal reflux, and was started on a proton pump inhibitor (PPI). Her pains went away again. Occasionally there were relapses that were more mild. During pregnancy with Christopher (baby number 6) she had obvious reflux that responded well to typical reflux remedies.

I will never know if some of these prior pains were caused by that slowly growing tumor, but I suspect at least the Mountain Home pains 5 years earlier were.  

Back at home, after the party, she was able to get comfortable and she slept. We decided that we needed to discuss the matter with her OB.  

As a pediatrician, I have worked with some very fine OB’s, watching them deliver babies in high risk situations, and Dr. Oldroyd was the very best, top notch skills and the most professional old-school attitude in all the right ways. His nurse, Leslie, was very competent and always empathetic. We knew they would make the right calls.

Dr. Oldroyd was concerned, and rightfully suspected the most common source of that pain, brought on by fatty food, would typically be her gallbladder, but alas, it was not. He ordered an ultrasound of her right upper quadrant.  

A week or two after the Christmas party, Julie was in the hands of a highly skilled ultrasound technician, Dawn Livingston. After scanning her normal gallbladder, Dawn took a look at her pancreas, and found a golfball sized tumor there. Dawn is the kind of health care professional whose empathy is not dulled by repetition. She and Julie bonded as mothers, and Dawn has remained a concerned friend even now two years after Julie’s death.

I was in my office when I got a personal call from the radiologist. “Brad, I hope you are sitting down… Julie has a mass in her pancreas.”

Self Contempt

The news was shocking, frightening, and I was consumed by the thought that had I been more aware I might have discovered this earlier. Was I blinded by selfishness, and denial that something could change my happy, easy life? 

Julie trusted me, and I had let her down, and she was going to suffer greatly.

Many times before and since her death have I lain on my bed or floor clutching at my knees, sobbing and cursing at myself, ashamed that I had been so blind and so selfish. 

That is just one of my regrets that made peace and comfort elusive. As I have grieved I found many ways to reproach myself for being selfish and blind. I realize that much of it was unfair to myself, and friends told me to “knock it off” or to “not go there,” but I also know I could have done better, and guilt is the focus of the grieving heart.

During Julie’s ordeal, I wept and mourned when Julie mourned. As the end drew near and her pain and suffering were at their peak, I assured her that she would be at peace when she died, and she would continue to be with us. I did everything I could within reason to ease her pain, and relieve her suffering. I walked the fine line of giving her enough pain medication without overdosing her. I stayed awake with her, massaged her, held her, fed her, helped her to the bathroom, scooped feces out when should couldn’t push them out, cleaned her, consoled her, loved her and was always full of pity for her. At times I was also full of pity for myself and our children, and I would sometimes discover myself thinking about a day when it would be over.

It is not over. After Julies passing, the complete emptiness and the seemingly complete void of her existence was like a dark, black, tangible thing. My regrets were a burning fire of self contempt, that lead me to walk alone on cold, dark roads, screaming at the stars in the night sky, “Are you there?  Is anyone even there?”

Back in my office Dec 2007, I was grappling with realizing what the mass was.  I knew it was probably cancer.  It was surreal. I felt like an observer of a tragic fiction story as I said to myself, “Julie has pancreatic cancer!”  

PNET is Cancer, of the Worse Kind

I remember nothing of telling Julie about discovering her tumor. I guess I was in shock and don’t remember if I ran home to tell her or if I called and then ran home. Late that afternoon, Julie was getting a CT guided needle biopsy of the tumor.  

In retrospect I would never advise anyone to do a needle biopsy of a pancreatic mass. A non-cystic pancreatic mass is almost always cancer, and is almost always going to be removed anyway. Many physicians say that a needle biopsy does not cause hemostatic metastasis, but I have looked at the articles and studies about that, and find them very inadequate to support that claim. Just get the damn thing removed, because the only chance of cure is complete surgical removal before it metastasizes. That is true of both types of pancreatic cancer.  

The biopsy was on a Friday, four days before Christmas.  Sunday we had news that the tumor was likely pancreatic neuroendocrine tumor (PNET). We were erroneously told that it was “not cancer” because it was slow growing, the rate of mitosis (cell division) not high enough to be considered cancer.  Whoever decided that PNET was not cancer likely had no clinical experience with patients with metastatic PNET. Slow growing also meant poorly responsive to chemotherapy, and every stage of pain, nausea and suffering would be just as bad, but it would just last a lot longer.  Perhaps it was good that I didn’t realize that at the time.  

A Decision

Christmas week was a mournful one. Now Julie was 20 weeks pregnant. Would we lose this pregnancy? That would devastate her, but so would keeping a cancer in her.  

We saw a local surgeon who wisely decided he should not remove the tumor, but referred us to Huntsman Cancer Institute in SLC. A week later, we met Dr. Courtney Scaife.  She was kind and serious, and generous with her time. She reviewed the scans and pathology reports and recommended waiting until after the birth of the baby to have the tumor removed. She felt that 5 months would not significantly change the growth or chance of metastasis of the tumor.  

Julie was relieved and anxious at the same time.  She really wanted the tumor out and was still very frightened by it, and not at all pleased with Dr. Scaife’s recommendation. She was also relieved to know that the baby would be safe, and that convinced her that Dr. Scaife was right.  

The needle biopsy was perhaps the best way of diagnosis in this case, since it gave Julie the assurance that the tumor was not the rapidly progressing adenocarcinoma that kills in months, and at least she could wait for the baby, then be treated.  We could have come to a similar conclusion without the needle biopsy.  

In the months that followed, Julie seemed much more exhausted and sick than with other pregnancies.  A bad nights sleep or the wrong food would really set off the tumor pain, and she would get anxious about the present and the future.  

The Little Boys

Christopher was 2 years old, and he and I became late night grocery store buddies, as Julie would go to bed early, and I would hurry to the store before Christopher’s bedtime. He and I bonded at that time, and it has lasted. He was very smart, and very conversant for an almost 3 year old. You could always see and sense that he was aware of so much more than other children, that a lot was going on behind his eyes. He was great company.  

Julie always saw into Christophers mind, knew his mischievousness, and his hidden sorrow. There are several photos of Julie giving Christopher a sideways glance or a suspicious look. It was comical and precious. Shortly before her death, Julie told me, “Watch out for Christopher. He will be crying, but he won’t show it.”  

Birth is a miracle. Noah’s birth was another miracle. One of the happiest days ever. Noah is a child who cares about others. He always used to rush to Christopher’s defense anytime Christopher was in trouble with me, boldly running between us, that little boy, eyes big with fear, yet standing between the raging dragon and his brother, with courage and a sword of compassion, looking up at me and saying, “It is OK Dad, it is OK!” This act was especially impressive since the source of the trouble was usually Christopher doing something to hurt Noah.  

Christopher and Noah were Julie’s last two precious children.  She adored them and wanted so much to live long enough to see them become adults. I wanted that more than anything in the world. I prayed and cried to God and begged Him for that.

New Life

About six weeks after Noah was born, Dr. Scaife removed the tumor along with much of her pancreas and 17 lymph nodes.  It was a major surgery. Julie was in the Huntsman hospital for 5 days, at first always on her back, in pain or drugged up, dripping with milk while I tried to pump it against gravity, and keeping it coming enough so she could breast feed Noah when she got home.

The nurses and doctors were grateful for my presence and expressed wonder that “for a doctor” I was very helpful, ha ha.  They must have had bad experiences with doctors as patients or spouses in the past. Dr Scaife was visiting daily and at the end thanked me and told me that I did an amazing job as a husband doctor. I was grateful for the reassurance. But she also told us that 3 of the 17 lymph nodes had tumor in them.  Disappointing, but only time would tell if there was any left in the body.  

Julie left the hospital with a new life, and just a trickle of milk.  We came home to seven happy kids, glad that ‘it” was over for now. Noah was a strong sucker and got Julie’s milk to come roaring back.  Jordan was the oldest child, 18 years, and was getting ready for college, Kendall was 16 and in high school, Jonny 14 and in Jr. High, Heidi 9, Nate 7, then Christopher almost 3, and Noah the baby.  

The next four and a half years were the best of our lives, filled with family fun and lots of laughter.  Julie was really in her prime; strong, active, and throwing all of her great energy into motherhood, and she cherished it.  She and I went on hikes and trips together, but mostly we were occupied with our children’s lives.  We were not very concerned about her tumor, and had convinced ourselves that “it” was over, more willful blindness.  Her yearly scans remained clear, until December 2012, 5 years after her initial diagnosis.

A few months before her December scan, she began feeling tired and was having a lot of diarrhea, perhaps a symptom of tumor hormonal effects.  Scans in December 2012 showed that she had extensive inoperable metastases in her liver, and metastases to several lymph nodes.  She also had very large tumors of both ovaries.  She began an oral chemotherapy that kept the cancer from growing further for about 2 years.  By 2015 the tumors were growing again, and in Apr 2015 she was found to have a left hip/femur tumor that had to be removed that May.  

The next 2 years were filled with findings of many more metastatic tumors eventually involving most of her skeleton, then more chemo, radiation, procedures and surgeries including a femur replacement.  She suffered tremendous pain, nausea, exhaustion, malaise, fear and despair.  She uttered words of such anguish and sorrow, gushing with tears and sobs, “This is not who I am, this is not how I want to be remembered.  I want to run and play!”

It was during this period of despair that I began writing a little for friends and family to keep them aware of Julie’s condition.  It turned into my therapy.  Julie was grateful for the things I wrote, and they comforted her also.  Some of the words she spoke illustrate best her level of suffering and sadness, and can be found in this blog.  

Life was not all bad.  We had happy children, and did our best to find joyful moments, and make meaningful memories together.  Julie was always gracious, kind and sympathetic towards others, and the more she suffered that greater these qualities became, and she would not show any degree of contempt.  She was always patient with my complaints.

When she thanked you for helping her it could pierce your heart and bring you to tears.  For me she expressed the most earnest love and gratitude in tones that I can’t really describe.  It still pierces me to this day to hear in my mind her simple divine words every time I helped her, spoken with soft pleading tones, and a gaze of loving yearning, “Thank you, I love you!”  

Timeline, Fighting to Live

Dec 2007: Julie 20 weeks pregnant with Noah, diagnosed with pancreatic neuroendocrine tumor, PNET.  Waits until after Noah born 29 Apr to have surgery to remove tumor.

Apr 28, 2008: Noah born

June 2008: tumor with much of the pancreas and spleen removed 3 out of 17 lymph nodes have PNET.  Four and a half awesome years, believing she was cancer free.

Dec 2012:  discovered metastasis to liver, peritoneal surfaces.

Winter/Spring 2013: many tests, more tumors discovered in pelvis/ovaries, started oral chemo.

Summer 2013: progression of liver tumors, change in oral chemo with good results, stable, no progression, some tumor regression, remains stable for almost two years.

Spring 2015: pain in left hip due to new tumor in proximal left fever.  The beginning of unrelenting pain. 

May 2015: Tumor scraped out, stabilized with rod and plate, followed by radiation treatment.

June 2015: appendicitis, photos taken during laparoscopic appendectomy show that large ovarian tumors are not invading adjacent tissues (previously believed to be invasive so left in place), so they are free and accessible for resection. 

July 2015: both very large ovarian tumors easily removed.

Fall 2015: after 5 month chemo break due to surgeries, resumed oral chemo, recovering well from surgeries.

Feb to Apr 2016: progression of liver tumors, plans made for liver radioactive microsphere embolization.  During liver mapping and treatment, had increasing pain in lower spine and pelvic bones, caused by numerous tumors in spine and pelvic bones.  Just half of liver treated with radioactive microspheres.

Apr/May 2016: unrelenting pain continues, episodes of severe pain, starts long term use of opioid pain medications and patches.  Radiation to lumbar sacral spine.  Starts IV chemo.

May 2016: pain in mid back, due to tumors throughout spine, pathologic fracture of 11th thoracic vertebrae, treated with radiation.  Stops IV chemo.

June 2016: after pain in left hip since Feb, discovered increasing tumor growth around implants in left femur, proximal femur replacement, very painful, a long recovery to walk without aids.

Fall 2016: restarts IV chemo, with a pause in chemo for radiation to right shoulder tumor.   Tumors in liver, peritoneum, lung, ribs, sternum, shoulders, scalp, all vertebrae, pelvis and hip.

Winter 2017: gradual but increasing toxicity of chemo.  Neuropathy, fatigue, and nausea become common.  More pain requiring increasing doses of opioid pain medications.

May 2017: worsening pain left mid femur, tumor growth mid-distal femur around implant, treated with radiation.

June 2017: off chemo due to toxicity/side effects.  Intrathecal (spinal) opioid pain pump placed.  Plan for PRRT had to be postponed.  

June/July: 10 days in hospital with obstructive pneumonia of right upper and lower lobes due to tumor obstructing bronchi in right lung.  Paralysis of tongue, unable to speak, chew and swallow, due to tumor at base of skull, impinging on right jugular foramen through which passes the glossopharyngeal nerve, which supplies motor and sensory pathways to the tongue and pharynx.  Concerned this might be the end.  Radiation to lung tumor and base of skull work amazingly well, recovers ability to speak and eat, pneumonia resolves.  

Aug: plans for PRRT postponed again due to hurricane in Texas.  

Sept: to Houston for PRRT, treatment with radioactive tagged molecules that bind only to tumor.  Due to extremely large tumor burden and thus large dose of radiation, becomes very ill. 

October: Struggling to breath, large pleural effusions drained, anemia, transfusion, pneumonia, can’t eat, starts IV nutrition. concerned that another round of PRRT could kill her, extremely week and malnourished.  Accepts hospice care.  Continues high potency opioids.  Occasional lorazepam which seems to increase mental decline.

November: Stops IV nutrition, expected to pass away, but begins to eat more, enough to prolong life, but not enough to gain weight.  Any movement is painful.  Very sleepy, thin and bony.  Skin yellow.  

December 2017: one week before passing she weakly says to me, “We need to talk.”  I am alone with her, she asks for it to end, can’t hold on any more.  Eats almost no food, little water.  Passes away on December 10.