Emilee’s Pancreatic Cancer Journey
My wife of 16 years, Emilee, passed from pancreatic cancer (exocrine adenocarcinoma) on January 31, 2017. She was first diagnosed on May 9, 2015. Here is a summary of her journey.
She hadn’t been feeling right for several months, maybe about six months or so. She had been losing weight, which is something she had wanted to do, so it did not initially sound any alarms in her head. Well, it might have, but she did not talk about it. She was also not quite right energy wise, and was feeling depressed.
One week before we went to the emergency department she asked me if her color looked funny, and I said that she looked a little pale, maybe a little yellow cast to her skin. I said let’s go to the emergency room. Initially she said okay, but then said no, she would wait.
Emilee did not like doctors, and she had to be pretty sick to even contemplate going to one. So I knew she was not feeling well, but she was very stubborn when it came to medical issues. Another week went by, and it was a Saturday morning. She called me into the bedroom and said look at her color. She was extremely jaundiced. Orange yellow color, like she had used some type of tanning cream. We knew something was wrong, very wrong.
At the emergency department, they took blood, and did an immediate CT scan. A short while later, the young resident doctor came in and said, I have some bad news. You have a carcinogenic mass on your pancreas. He really was a nice man, he just needed a softer way to break such devastating news. Also, her blood sugar was around 700, and now had diabetes which would have to be controlled with insulin.
Emilee would spend the next few weeks in Yale New Haven’s Smilow Cancer Hospital. Known as Smilow, they first addressed her blocked bile duct by performing surgery and placing a bile duct stent, or biliary stent, to allow the bile to flow. Her cancer was staged at stage 4 with metastases to her right adrenal gland and both of her lungs (diffuse but numerous tiny spots on her lungs, and the tumor was on the pancreatic head).
Eventually the blood sugar was brought under control. It took several weeks for her to stabilize and be strong enough to go home. Surgery was not an option, and her first oncologist presented limited chemo options, due to her debilitated condition at the time. In July she started Gemcitabine and Abraxane, the only regimen her oncologist felt she could tolerate. It seemed like just about every chemo treatment Emilee would wind up in the emergency room for one reason or another.
By the end of August (she was getting chemo every other week), the side effects from the Abraxane were so bad that it was decided to just try the Gemcitabine alone. We also decided to change to an oncologist that had a little more hope in his approach and some optimism in our being able to explore different chemo regimens depending on how Em was responding.
If there was a side effect listed, Emilee had it. Mouth sores, loss of hair (she actually looked really good bald and then very stylish with short hair, and decided to not wear the four wigs she bought except for one or two occasions; I guess I have to mention the one day I wore one of her wigs and looked like a real hippy for a day), neuropathy, nausea, skin issues, sometimes pain, ocular migraines, neurological migraines, the list went on and on.
The neuropathy in her hands and feet stopped progressing once the Abraxane was stopped. Her new oncologist felt that the Gemcitabine alone could be helpful, and it seemed to be lowering her CA 19-9 antigen, but then she started with signs of lung toxicity from the Gemcitabine.
In addition, she was having ongoing nausea and digestive issues. She went back into the hospital numerous times for nausea control, for migraines, for occasional bouts of pain, and finally she needed a duodenal stent, actually two, (around January 2016) to help hold open the intestine where it meets her stomach (the duodenum).
That helped with nausea and digestion for about a month, and then the stent was no longer working properly and food was not going through as the tumor was infiltrating it. There was a period of about 4 weeks where she was constantly nauseous, with intermittent vomiting.
Emilee then had surgery (in the hospital from mid to the end of March 2016) to perform a gastric bypass and thus go around the blocked area of intestine. Finally, she was able to eat. Her bowels were not normal, and the food did not digest very well, she had frequent bowel movements, but she had an appetite and was no longer nauseous. The temporary GJ tube that was placed after the bypass surgery was removed within a week.
In January of 2016 she had one pleurex drain placed in her left lung due to repeated fluid build up. Then the gastric bypass, and 5 months later(June 2016), a pleurex drain was placed in her right lung. I was doing the draining every other day. Those stayed in place without any infections until December 30, 2016.
The chemo…..the Folfiri regimen. After she recovered from bypass surgery in March 2016, she began chemo again, and she did not like the infusion pump that stayed attached for two days. Oh yes, by the way, she finally had succumbed to having a power port placed primarily because she had no choice with the folfiri regimen. Up till then, she resisted, even though her veins were uncooperative and required some skill on the part of the IV nurses.
Folfiri had its side effects, the mouth sores, the nausea, some diarrhea, but overall not too bad and tolerable. We had a fairly good stretch where we stayed out of the hospital. I will always say “we” when referring to hospital stays, since I stayed in the hospital with her. Although out of the hospital, depression was an ongoing battle from early on. It varied from mild to severe.
Emilee’s breathing difficulties gradually got worse. By December of 2016 she was using oxygen at home both at night and during the day. It started out that she was more comfortable with the oxygen at night only, but as weeks went by, she needed it for comfort during the day as well. Her oncologist had decided that after the holidays, she would change to Folfox, swapping out the irinotecan for oxaliplatin.
She took a holiday break from the chemo. At some point, I believe back in October 2016, she started doing chemo every three weeks instead of every two weeks, to have more recovery time and to have some days where she could actually enjoy activity and have some energy to go food shopping with me, go to her daughter and mom’s house, and to go gift shopping and furniture tag sale shopping. She ran an online home decorations and furniture site on facebook, which required ongoing effort, and could keep her very busy when she had the energy and patience to do so.
Up to this point, she kept herself going by setting short term goals, such as making to a birthday, a holiday, birth of a grandchild, grandchild birthday, and many other such goals to give herself something to shoot for.
The Christmas holidays were always a major event, and she loved going all out with gift buying and making sure each person was very well covered. She was starting to feel weaker and her breathing was starting to deteriorate gradually. One of her fears was that she did not want to die around the holidays. She did not want her family to associate the holiday with her death. Her dad had died three years earlier of Alzheimer’s related issues, on January 31, 2014.
In late December (the 30th, a week after our sixteenth anniversary), her two pleurex lung catheters were removed, and a biopsy was taken from a large lump near the right drain. Her interventional pulmonologist suspected it was tumor growing out from the drain site. It was not painful, and even though the biopsy was positive, he did not feel it warranted any action.
On new years eve, which was a Saturday, she started having more difficulty catching her breath and her oxygen saturation was erratic, so we called 911 and the ambulance took her to Smilow and they admitted her. She was having sporadic breathing crises where she felt like she could not get enough air, even with 90 to 100% oxygen. These episodes would last an hour or more.
She was now on her favorite floor in the hospital. The rooms were not cramped and all were singles on the floor, most with a decent view and a large window. The staff were familiar, and competent, and Emilee had met many of them before.
With her breathing somewhat stabilized, they started her new chemo in the hospital on Tuesday, January 3. As an outpatient, she would have had the portable pump infusing the last of the chemo meds, the 5FU, over the course of 46 hours. In the hospital, she was attached to an IV/pump pole.
On late Tuesday (11pm), she was dropping to 88% O2 on 6 liters oxygen and although she was not fond of Lasix because it usually messed with her blood pressure, they started with a small dose of 10 ml, followed by 20 ml about an hour later. They switched her to a face mask for oxygen at 95%.
We were able to lower the oxygen to 45% after a half hour and she was maintaining 88% and above. We had to place a bedside commode since it was too much to keep getting to the bathroom to pee. The nurse came in at 5 a.m. to take blood to run labs, and after waking Emilee, she left to get something she had forgotten. I was asleep on the cot in the room. Emilee sat up in bed and needed to pee, so she stood and took half a step toward the commode and her feet got tangled…..and she fell.
I woke up to the sound of her flesh and bones hitting the floor. My yells brought a group of nurses and PCA’s. She did not hit her head and did not rip out her port, but she was talking about left hip pain and also having to pee. We got her on the commode (little did we know this would be the last time she would get on a commode for weeks). We got her into bed, for the beginning of an ordeal no person should have to experience.
They took Emilee down stairs for an initial left femur and hip x-ray, and CT scan of her head. Transferring her from bed to x-ray table and back to bed was excruciating, and to add insult to injury, after she got back to her room, orthopedics wanted additional x-rays taken and so they had to repeat the process all over again. The nurses placed a foley catheter so she would not have to worry about getting on a bedpan to pee.
They also wanted to get an MRI to rule out bone pathology, and that did not happen until about 6 P.M. She got some IV Ativan before the MRI, but refused dilauded at this point. It was not a restful night. Ortho came into the room at 5:30 a.m. to tell us that they still did not get the MRI report, but that they knew the bone was fractured at the greater trochanter and would need a titanium rod and screws to secure it at the top and the bottom, that would secure the three or so fragments that were cracked and displaced. Surgery probably would not be until later in the day due to the large number of emergencies (Emilee was thinking….uh, what am I???).
Later in the day she was in so much pain that she agreed to a small dose of dilauded, which prompted her to desaturate, and they had to maximize her oxygen until she improved. This is not what you want to happen before a surgery where they are going to intubate you. I was extremely concerned about them being able to extubate her after the surgery. Fortunately, her oxygen desatting episodes were scary but not much worse than the one she had just prior to the surgery.
She was in crisis mode shortly after getting back to her room after recovery, but after some debate with the floor doctor, he agreed to see how she was in one to two hours rather than send her to the intensive care floor. Luckily Emilee stabilized during the next couple of hours. We were able to control her pain with tramadol and Tylenol, and Zofran for the nausea she was having.
Since it was still too painful to move, or change positions, Em had to use a bedpan. If there was any modesty or dignity left, well let’s just say I did my best to remember to pull the curtain on the side of the bed towards the door, and to close the door….if anyone did come in (they almost always knocked first) they would encounter the curtain and I would ask them to give us time to finish.
I gave myself a new title, CPO, chief potty officer. Emilee was more comfortable with me than anyone else, and I accepted the responsibility and quickly learned two things. How to do it right, and that it was near impossible to keep the bandage on her tailbone clean. The skin was starting to break down from pressure, moisture, lack of movement. So frequent changing of the puff something or other (I don’t remember what it is called, the name of the bandage) was required.
We plodded on, with intermittent breathing crises, gradual improvement in ability to move her left leg, and standing with usually assistance of three, a physical therapist, a physical therapy assistant, and an occupational therapist. She would get on the commode only when they came, and she was taking a few steps by the following week.
On January 17th they started talking about discharging her to rehab, but Emilee said wait a couple more days. She had been on prednisone for a few days to help her lungs, and they stopped it today due to its wreaking havoc with her blood sugar. She was also starting to have incidents where mucus would get stuck and she would have trouble getting air exchange which was very frightening. These would last for a few minutes. Increased nebulizer treatments, percussion to her chest, and use of a plastic apparatus you blow into called an acapella, were helping somewhat.
She was getting agitated that afternoon, after having a migraine, and was just getting fed up with everything. I got her Japanese food that she liked for dinner as she was sick of the hospital menu by this time. She also started having pain that evening in her lower back and right abdomen which was tender. Tramadol was not helping, but the IV torridol helped with the pain and the agitation that accompanied the pain.
The next day she had a fever and felt like she had the flu. An ultrasound of her abdomen indicated possible bile duct blockage. After 2 a.m. she was npo (no food or drink). Her fever had gone up to 102 but started coming down after Vancomycin. She waited all day for surgery which didn’t happen until about 5:30 p.m. and they needed to place a biliary drain (January 19) with an external tube and drain bag.
So another surgery was performed, fortunately without general anesthesia, and although I was told there was some cursing on her part during the procedure, she generally tolerated it well. It was only on December 30 that she had her two pulmonary catheters removed, and now had to have another drain, but at this point she did not mind so much. Anything that kept her more comfortable was acceptable.
Ten minutes after returning to her room from the recovery room, she began what they call rigors. Pronounced “rye gors”, severe chills with violent shaking, her temp went to 101, her heart rate was 130, sugar was low at 60, BP went to 180/100, but came down to 130/82 after awhile, and her o2 sat was at 82 on 5 liters oxygen, and that came up to 90 with facemask and o2 rate at 50%. Heart rate lowered to 84 after 20 minutes, and IV dextrose brought up her sugar.
By the following day, her bilirubin was decreasing, her sugar was better, urine output was still low. She had been on Vancomycin and ceftazadine the last two days for the biliary issues and I believe a urinary tract infection. She had also been using a urinary catheter for some time after the fall and fracture and following the hip surgery. Physical therapy was able to switch her to nasal cannula oxygen with good o2 stats maintained, so she could take a few extra steps from the bed towards the door to the room.
Early Saturday morning 4 a.m. January 21, Emilee woke up nauseous and vomited, and got some Zofran and Ativan. The doctor wanted to try a small 1 mg dose of Haldol but she refused. At 10 p.m. she was nauseous with head turns, achy all over her body, body very cranky….got Ativan and tylenol, and finally quieted down by 2 a.m. Sunday morning she was still nauseous, and had blood in her urine, but an ultrasound did not show anything. The night before they stopped the Vancomycin, and this morning stopped the pantoprazole. Her o2 dropped at 4 p.m. and she needed to switch back from nasal cannula to mask. The same thing happened at 11:30 p.m., and she stayed on the mask, and was able to drop from the initial 70% o2 to 40% after a half hour. She was able to go to sleep with 28%, but at 430 a.m. woke up and her o2 sat was 84%, which improved with 40% O2. Her respirations had increased to 28 per minute during the event. They gave her 1 mg Ativan during the episode.
At 7 a.m. Emilee’s achy back and legs increased to severe pain, and the tramadol was having very limited effect. Torridol was given. Later in the day (Tuesday January 24), they gave Em a unit of blood to boost her hemoglobin and hopefully improve her energy. She was still on the ceftazadine. At midnight Tuesday into Wednesday, she had right abdominal pain and her abdomen felt harder in that area.
Later in the day on Wednesday, two different hospice people came to talk to us. One was inpatient hospice which means she could stay right where she was, have the same staff treating her, but an outsourced hospice team oversees the medical orders. The other was a hospice facility that she would have to be moved to.
Emilee slept all morning and most of the afternoon on Thursday January 26. I don’t think she wanted to be dealing with the decision of hospice. It all came on too quickly, hastened by the fall and leg fracture. She did not want to deal with it, so she slept.
Unfortunately, the number of beds allocated to “hospice” in the hospital were limited. That meant if we did not make a decision soon, the allocated space would go to someone else. So to add to an excruciatingly difficult decision to be making about your death, a little pressure to hurry up and make a decision, made for one very upset and very angry Emilee. She flung a package of cheese just out of sheer frustration. I think she really wanted to break something.
Emilee finally ate something at 4:30 p.m. that day, she had one of her favorites, a grilled cheese. They resumed the pantoprazole, as she felt burning in her abdomen. Our favorite APRN came in to talk about the hospice decision, and since Emilee was leaning towards staying where she was already comfortable, with staff that she knew and liked, it just reinforced what she and I were already thinking. The decision was made.
Everything remained the same except it was easier to increase the frequency of pain meds. On Saturday much of the family came to visit, and she had visitors most of the day, which made for a very tired Emilee. My son and daughter in law came with our 1 ½ year old granddaughter and 1 month old grandson. The baby laid on Emilee’s chest as our granddaughter gave Em a hug. To say that was priceless doesn’t begin to describe my feelings, and Emilee’s as well I am sure.
I did not hear any formal goodbyes, but the feelings were present in the room. When I said goodbye to them downstairs and my granddaughter reached out for me to pick her up and hug her, I lost it completely. I held her and sobbed and my daughter in law hugged me too and we all cried. She said she would come back in a few days and I told her I didn’t think there was that much time left. They live about 2 and a half hours away. I had already called my brother in Florida and he was flying up on Sunday.
Saturday night Emilee started having difficulty at 10 p.m. We gave her Ativan and increased her oxygen to 70% and then at 4 a.m. her O2 dropped to 78 so we increased her oxygen to 98%. IV Ativan was repeated, we were using the rebreather which is essentially 100% oxygen, she had a nebulizer treatment, and finally her O2 sat came up after dilauded was given. She finally fell asleep and seemed more comfortable. She really did not want the dilauded I think because she thought she would not wake up. She was so distraught in discomfort and pain and getting increasingly agitated that I had no choice.
Emilee slept until about 10 a.m. She was very groggy at first, with absolutely no filter to what she was saying. I can’t recount all that she said, but some of it was quite hilarious, and her daughter decided to wait a little while to bring in her children lest the last thing the children remembered of their mimi was something very off color.
Emilee was okay while her daughter, son in law, and children visited on Sunday. Her mom had been there on Saturday, and Emilee’s son as well. On Sunday afternoon, my brother arrived to a tearful scene, and a close friend came early evening. That night Emilee was up from 1:30 a.m. to 7 a.m. Multiple doses of Ativan and torridol, and she was telling me to take her home, she said, “take me home, take me home, I want to go home”. Another dose of dilauded at 7:20 a.m. and she finally went to sleep. That was the last time she spoke.
She slept all day Monday, except for around 5 p.m. when she got very restless and started pulling at her oxygen mask and her port line and we had to give her more dilauded. Her daughter, my brother and I were with her all day, and one of my sons and my nephew came to see her as well. Another friend came at 10 p.m. because I told her to come to say goodbye. She stayed with me and Em until midnight.
I moved my cot next to her bed. I held her hand as I lay near her and said all the things I wanted to say and I told her not to be afraid, that I loved her, that all of us would be okay, and it was okay to let go and be at peace. I woke up at 3 a.m. I could tell her breathing had changed and was now slow with long pauses between breaths. I put my head on her chest and listened to her heart and felt her chest slowly rise and fall. By 3:40 a.m. she had breathed her last breath. This incredible woman, my wife, was finally home.
Exactly three years earlier on January 31, 2014, her father had died at about 12:30 a.m.
I will do my best to share what I have been going through since she passed. That will be my next effort.
Neal Klein
Life After Emilee, on the loss of my wife to pancreatic cancer. I’m not accepting comments right now but please feel free to get in touch via my Contact page.