esophageal cancer · Uncategorized

Brain changes, hallucinations, drugs, end of life.

My 65 year old husband recently passed after a two year battle with esophageal cancer. We were luckier than most esophageal cancer patients because we had large windows of quality time. The last two months were the most challenging partly because of his hallucinations and night time escapades. My husband was often a kidder so identifying if he was pulling my chain or not was a challenge.

About three months before his death I overheard him on a business call and I thought to myself – that order is going to be so messed up. He wasn’t taking down any notes to speak of for a very large project. At the time I just assumed he knew what the hell he was doing……looking back this might have been the beginning of the end. That next week he had the stroke and went out on FMLA. There were several work phone calls that he received during this time which indicated there were huge issues with that project.

We often chatted about our assets and whether or not we had handled all the necessary items in case he or i died – we re-visited most of this when he got his terminal diagnosis in June of 2015. One day shortly before his stroke he gave me a smirk and said well I still have part ownership in that gun shop in Arizona with a bunch of guys. My husband grew up a hunter and had liquidated all his personal guns when he became ill. I questioned the gun shop because in 24 years of marriage it had never been mentioned. He stated it wasn’t worth looking into probably not worth anything – couldn’t even remember the name of the guys he owned it with. I honestly could not tell if he was joking or not.

After his second stroke he recognized all of us but felt he was in the 1970s. I am his fourth wife and certainly wasn’t married to him until the 90’s. His daughters and only children were not born until the 90’s. He was able to tell me everything about them and us just his time frame was amiss. He thought we lived in Colorado. He often thought he was in a hospital at a base. He did spend about 4 years in the air force in the 70s in Colorado.

One day while still in the hospital I was there with our oldest daughter and he said I lost a dog on my watch last night. This was the second story about losing dogs during his watch. This one seemed to distress him more. He wanted me to come closer to whisper to me out of ear shot of our daughter. So I did. He sadly said it was Madeleine (our family dog) and glanced at J. This was definitely not the case because J and I were spending each day going back and forth to the hospital and home to take care of the dog. We were able to reassure him and brought videos in each time we went home. He missed his dog.

Our eldest daughter (23) and I had moved our masterbed to the family room while he was hospitalized. From this location he could watch TV and interact with the rest of us. So hard to classify whether the following events are hallucinations, drug induced, or brain changes, or all of the above. Our eldest daughter was here watching Mash reruns, news programs, and some pro basketball games and other movies.

I now understood why everyone said make sure you are getting enough rest – there was never enough. Medicine dosed around the clock….and other events.

When he was discharged after his first 21 day hospital stay he started sleeping on the main floor of our townhouse. He had started wearing pull-ups. Urgency seemed to be a developing issue. He could still ambulate to the bathroom but he often would not wake me up and i was terrified he would fall. He had his antibiotic bag he had to wear for a month because of the staph infection to his craniotomy site. He had a massive incision on his head. He was quite unstable from being in the hospital for so long. I started by sleeping on the couch in the front room which he would have to pass by to reach the bathroom and eventually ended up sleeping in the recliner next to his bed.

In the middle of the night I heard his IV bag alarm going off. I got up and found it disconnected and running all over the place. I asked him what happened and he said he gave it to the other guy he needed it more than him. Such a gently soul. I got a new bag and reattached his medicine.

Another evening he explained to me the IV antibiotic pouch he wore each day 24/7 for a month was an NBA bag of some sort and he wanted to gift the coach of the winning WNBA team some pull-ups. He said all of this with in a serious tone. Bizarre.

The next episode occurred when I was still sleeping on the couch in the front room. I had set my alarm for 3 am or so to give him his methadone. At around 1 am I heard a ripping sound so I asked him what he was doing – His response was “I have it handled” I knew immediately I needed to get up and investigate. I found him sitting on the edge of the bed with his pee soaked pull ups in his hands ripping them into little pieces and dropping them on the floor. (any clue as to what a huge mess this is to clean up dissolving foam full of pee) I got him cleaned up, new pull-ups – the bed cleaned and put him back into bed. He told me we were in Saudi Arabia (I think the news shows had shown Trump traveling there) and it wasn’t him that peed in the bed it was the little boys who were sharing the bed. I asked him why there were little boys in the bed and he said thats how they sleep in Saudi Arabia. Later that morning I heard him again get up and he was coming out of the bathroom without his pull ups and I got up to check on him. He again said be careful in the bathroom the little boys peed all over the floor. Yes there was pee all over the floor. I came to the conclusion in my head it was easy to blame the little boys who often pee in their beds/

One of the most amusing comments he said to me when i was sleep deprived cleaning up the torn apart pull-up was, “you don’t need to get that the servants will” – I thought if only – you are looking at her.

Another night he calls me from his bed around 4am and said can you help me I got stuck stretching. I find him completely sideways on the bed unable to return to his sleeping position. As I returned him to his sleeping position I noticed a two inch blood clot on the bed and quickly looked at his head incision – it wasn’t from his head and soon I was holding his nose for ten minutes – the clot was from when he picked his nose. We had several nose bleeds because he would unconsciously pick his nose. The middle of the night ones were challenging.

Another night I again get up half asleep from the couch because I hear my husband up and I walk into the kitchen to find him stark naked trying to stuff the comforter into our trash/pantry. I asked him what he was doing and he responded I am bringing bodies back from the front lines in Korea and I need to go back and get more. I was able to get him to go back to bed.

One morning when he awoke he said I think I took those pills too early ( I had taken over all medication control months before). I said what pills and why? He responded Ill be gone before my brothers get here. His brothers had trips scheduled to come in and visit. He said the pills to end your life that my friend from NJ gave me. Needless to say he took no pills and he was alive when both his brothers visited.

He told me one morning when he awoke he went somewhere and I just needed to wait because I will be amazed at what modern medicine can do. I asked him and he said we can now go back to before I was sick and be healthy again. He said what he learned had to do with time. He said he would explain it all later….but it was amazing.

Sitting on his bed talking to him one day he told me to be very still…..He said there is a gun pointed at the back of your head. Of course i turned around and nothing was there.

Who is Greg? One day when he was still able to sit in the recliner he said to me Greg is sitting right there. No one else was in the room – he mentioned seeing this Greg several times.

What were these episodes – who knows – sometimes they seemed related to TV shows, sometimes related to nothing, Luckily they were not traumatizing except for the one about the family dog. He accepted and trusted my reassurances.

esophageal cancer

Esophageal Cancer

Esophageal Cancer Journey a 2 year journey

I think many of us forget that cancer is your own body going awry. We tend to think of cancer as an unwanted invader like a virus however it is more like an autoimmune disease where your body destroys itself.

Our journey began one evening when my super healthy 63-year-old husband got up from the dining table and went to the kitchen sink to throw up. I thought he was choking and became quite alarmed. He wasn’t choking he was trying to remove something caught in his throat (broccoli if my memory is correct). After he was successful he sat back down. Being very worried I started a conversation with him where he explained how some foods mainly bread seemed to be getting stuck on and off since around January. It was now May.

Alarm bells started firing in my head. I remembered a case similar in my old floor nursing days 15 years earlier when a man came in with a similar problem. He was discharged and died shortly after. I started voraciously googling and reading articles, crying, and began to panic that he had esophageal cancer. He had no risk factors except possibly too much weight. No history of reflux. Esophageal Cancer statistics are horrifying even when caught early.

He had been thrilled about his recent weight loss without working at it – I told him to call his internist and get seen. They ordered barium swallow, which showed some narrowing in his distal esophagus (near the stomach). Next we were off to the gastroenterologist for a scope. Meanwhile this all took time – weeks and he was able to eat less and less…by the time of his scope liquids only.

We went to have the scope and the gastroenterologist called me back to his office after the procedure. He said, “I can’t pass the scope he is too narrow. He will have to go see someone in Baltimore”. Later that week we were in Baltimore getting a stent and having a very necrotic appearing tumor in his GE junction biopsied. Our oldest daughter was with me and the gastroenterologist told us he had to wait for the pathology but in his judgment it was cancer of the esophagus. We waited for George to wake up. We drove home. The gastroenterologist told us since he was so healthy and young he should probably get aggressive chemo to prolong his life

The next three weeks we had trouble thinking and breathing. Our precious time was jammed full of doctors’ appointments, procedures, and tests. George had a port placed for chemotherapy. He had a CT scan, which told us he was stage 4 with metastasis to the liver and lungs. Another devastating blow – however by now I had already read how terrible the statistics are no matter your stage with this cancer. We had consults at major cancer center. Ultimately we were informed the first line esophageal cancer treatment is the same no matter where you go. We chose to stay local. He had a MUGA scan to make sure his heart was ok for specific chemotherapy. We consulted an endocrinologist to monitor his sugars during chemo. George had type II diabetes diagnosed several years earlier. During this entire time he was attempting to eat as much as possible. The stent causes the sphincter at the top of the stomach to no longer close so there is tons of indigestion and pain suffered due to the tumor. So added pain medications, bowel medications, GI meds, cardiac meds, diabetes meds, and sleep medication

The local oncologist put George on modified DCF, which is docetaxol, cisplatin and 5FU. Every other week on Wednesday we went to the infusion center and he received docetaxol then on Wednesday afternoon home health met us at our home and hooked up the 5FU which would run until Friday when we returned to the infusion center to get cisplatin. There were extra drugs and fluids hung so George would not have some of the chemo side effects and drugs to take at home to continue to minimize side effects. George essentially slept each weekend after treatment.

At the beginning of this journey his weight was around 220 lbs. and he weighed 180 lbs. by the time treatment commenced. We constantly addressed nutrition. We learned to make high protein shakes to help. George was a non-insulin diabetic but with treatment became an insulin dependent diabetic.

George worked throughout his treatment – partly because this was a part of his identity and this kept his mind active and off the fact he had a terminal cancer.

Every other Wednesday the infusion center drew bloods to monitor how George’s body was handling the treatment. By the 7/8 treatments his blood counts were bad and his oncologist would not allow more treatment until his blood counts improved. George was begging for a break anyhow…. the doctor decided to order a CT scan. George had a complete response to treatment… and his stent had fallen into his stomach. We learned this often happens with the stents and we scheduled a scope to remove the stent and they took biopsies. Results were no Evidence of Cancer and CT scan was clear. We were cautiously elated…

At this point we returned to Johns Hopkins and consulted again. The suggestion was to start Xeloda the oral equivalent to 5fu. George started the drug and was cancer free until June 2016. The cancer had returned in the GE junction and no where else. He knew because he had trouble swallowing once again. Back to Baltimore and a second stent was placed. Discussions were had at this time about surgery. Consulted with a thoracic surgeon at Hopkins. The surgery is an intense (all day with many possible complications including difficulty with eating after) and the vagus nerve gets cut. The surgeon had told us he had done 6 esophagectomies on stage 4 patients and 5/6 had reoccurrences.

While George contemplated whether or not he was interested in the surgery they started prepping him. Carbotaxol and radiation to the esophagus. He had 28 radiation treatments. After 2 weeks of radiation eating became painful a problem once again and he eventually got down to 156 lbs. After the treatment had finished and the Pet Scan determined he was cancer free he decided the surgery would not happen. He received a radiation boost at this time.

We made it until Thanksgiving without an issue and sitting down to eat he once again got something stuck, We went to the ER and he had a scope and the food removed. Follow up appointments were scheduled.

Another CT was performed and the cancer had returned to the liver and lung the esophagus looked ok but required dilatation. At this time we were actively pursuing a trial involving immunotherapy at Hopkins. Getting into these clinical trials was taking quite a bit of time that we didn’t have.

While awaiting the trials George hit his head on a cabinet at home. He subsequently developed a goose egg. The local oncologist didn’t think it was cancer but suggested he see his internal medicine doctor and get an x-ray. Turns out it was a lytic lesion so our next stop was an MRI.
The MRI showed us it needed to come out. The lesion had destroyed his skull and was expanding. We next visited a neurosurgeon and a craniotomy was scheduled. The MRI showed no mets to the brain, which relieved us. With the head mass came unrelenting back pain – so the oncologist wanted George to see pain management when he was in the hospital for his craniotomy

George was now spending much of his day in bed – knocked out from pain meds. He awoke late in the day Wednesday April 19, 2017 before his scheduled Monday craniotomy surgery with right-sided weakness in both his arm and leg. I evaluated and felt it was the result of lying in bed all day. When we went for a walk later that evening I realized this was something more – his gait was off. At 10:30 pm we headed to the emergency room.

At the ER they decided to admit him for multiple reasons. Uncontrolled Back pain, elevated troponin (cardiac) levels, and stroke like symptoms. It was determined he had had multiple watershed strokes. Fortunately his deficits had cleared by the next day. We were then faced with the decision of surgery (craniotomy) or not and could cardiology clear him because of the strokes. Gastroenterology would not sign off on a blind trans-esophageal study of the heart. Cardiology was hypothesizing the stroke came from vegetation around the heart. The lytic skull mass was growing and taking space so the decision was made by us understanding there were again stroke risks. Throughout this journey we were faced with making decisions like this where we had to choose the lesser of two evils.

The surgery (craniotomy) was performed and the surgeon told us they removed most of the mass. They could not get it all because part of it lay in the major blood supply to the brain. UGH. He had more strokes while undergoing surgery and these deficits lasted longer. He spent many days in ICU where his blood pressure was raised to perfuse his brain so the stroke areas could get enough blood.

After being transferred to the floor he had to return to surgery and have the titanium mesh removed because of a hospital acquired staph infection. Severe uncontrolled back pain continued to be an issue the entire hospital stay. All the heavy hitters morphine, dilauded, oxycodone, fentanyl were used without success. Finally methadone helped and he was discharged. A neurologist theorized the upper back pain was a result of the skull tumor interfering with the meninges.

We learned the pathology of the tumor from the oncologist. This was squamous and not adenocarcinoma like the first biopsy……. But still esophageal. Theory being the original must have been of mixed type but the small biopsy didn’t show this. However the strokes and the two cell types excluded him from all the clinical trials.

George was discharged after 21 days in the hospital. He now wore pull-ups routinely. He needed assistance to get from his bed to a recliner, and with all activities of daily living. I slept in the recliner next to his bed on the first floor. He had many hallucination type events each night and sometimes during his waking hours. He remained his kind loving gentle self – there was definitely cognitive decline and I knew he never wanted to live like this. I remained hopeful and he still wanted to be treated.

The plan was to radiate the remaining head tumor and actively try to acquire Keytruda off label. Keytruda was $13,500 a dose every three weeks, We were tired of waiting for insurance and realized we were running out of time so we bit the bullet and said start treating him. Luckily Merck stepped forward to cover our expenses.

We started radiation to the head where the remaining tumor sat. He had 12 treatments scheduled. These were painful because he had to lie flat to accomplish this. We had to add yet another drug sublingual fentanyl before each radiation. George started to have some back relief with the radiation treatments. Confirming the back pain was connected somehow to the head tumor.

After 6 radiation treatments he awoke one night saying he was having difficulty breathing. He seemed panicked. We went to the ER. His Sats were 83. They again admitted him to have a pleurovac placed in his left lung the next day. We explained to the staff he was stage 4 and we wanted to get in and out ASAP. We didn’t have time to waste in the hospital. He was back in the hospital with labs jumping all over the place. He stayed another four days and was discharged. He was not eating much anymore.

Finally he was discharged on a Friday again with a pleurovac to drain and O2. Upon discharge we went to the infusion center and he got one dose of Keytruda. The following week he was weaker than ever although not panicked – he slept most of the time – no longer interested in going to sit in the chair. By the following Friday his daughters had both arrived. He went in and out of consciousness – mostly out. The next day, Saturday he passed at home at 10 am. with his adult daughters, the family dog, and myself by his side.