Obituary etiquette

When my husband died the town we were living in put a post up on legacy and obits saying he had died. People can comment here about their relationship with the deceased. I put an obituary in a newspaper where he was born and raised. We were nomadic so that made the best sense.

Today I went to the site legacy and was somewhat both amused and appalled by what I found. First a little background I was my husband’s 4th wife. Ours was the last and the longest. The only union with children. We were married 24 years the others lasted under 5 and two of them much shorter. Anyhow here is the comment at the site

– I wrote Haiku poetry often.
This one I wrote for Brian, ‘Your nearness excites, Dawns animal desires And kindred spirits’
He was very important to me when we married. I wish … many things.

August 31, 2017 | Spouse

Obviously she wasn’t thinking or didn’t care.


Room 100

On November 17 it will be five months since he died. I have lived with our dog in a long term stay hotel near our eldest daughter. There are days when i am totally surprised by how long its been since he died…..still seems like he just died. Im numb, cry rarely, just seem incapacitated unsure what to do next.

I really have no clue what to do next. We had talked about moving to the Charleston South Carolina area to retire. My plan is to head there on November 16. Spend thanksgiving with my daughters and the dog and then seek employment.

I worked as soon as I could in my case in Illinois I was thirteen. I held the usual teenage jobs at the mall, Walmart, etc. After this stage my early working career was in nice restaurants and bartending while I was floundering trying to finish an undergraduate degree. Spending far too much time chasing boyfriends. Finally I completed an undergraduate degree in Nursing in Philadelphia. I worked at Jefferson downtown received much more than just a nursing education…I grew up in a small midwestern town. I adjusted and grew. Eventually I met my spouse and we moved to Northern Michigan and I continued to work but this time in a small community hospital…..a completely different education and way of life. I adjusted once again.

My spouse took a job out east which made it possible for me to be at home with our first daughter. I loved being with her. We had a second daughter. I enjoyed being with both of them. Finally when the girls were in college/finishing high school I decided to do a refresher course so I could return to work. Shortly after completing this my husband was diagnosed with stage 4 esophageal cancer. I spent the last two years caring for him – everything i knew from nursing returned.

So now I must find a job. I have updated my BLS. I have two active nursing licenses. Can I find a job I wonder. I am 57. I still have one child in college.

Sometimes I am panicked, sometimes I am sad, sometimes I am frightened, this is all so new……….


I am that woman

My sister told me a very funny story the other day. She is a highly successful talented 55 year old who has done the dating scene for years. She was on her way to work in her white coat and stopped at a grocery store to pick up her dinner. While in the grocery store a man approached her and asked her if she dated. She responded some. He then proceeded to go on and tell her he had a friend who he was looking for (odd). They chatted a few minutes and then he says cut off age is 48. OMG what is it with cut off ages –


7 years Ago

July 14.2010

It was another beautiful day on Bois Blanc Island in the Straits of Mackinac. The summer sky was so blue. I was there with my youngest daughter, Nicole visiting my parents Matt and Liz Patrick for a month or so. My parents had owned the summer retreat for 28 years. We all tried to go every summer. I had been there about two weeks on July 14th.

While visiting my mother had been busily helping me find a place to purchase in Florida where I had lived with my two daughters for about two years as my oldest daughter trained to play professional tennis. Jacqueline, 16 had traveled to Michigan with us to visit what we refer to affectionately in the family as the Red House. It had been a couple of years for Jacqueline and she felt an internal drive to go to Bois Blanc. We arrived around the second of July with Brian their dad, Jacqueline, Nicole, and our six month old Berger Picard, Madeleine. Brian had to leave shortly after we arrived to return to work in the Washington DC area.

On the eighth of July my mom, Jacqueline, Nicole, Madeleine and I piled into our car and we headed to Grand rapids area to spend the night. Jacqueline was departing the next day for France to play tennis until the end of August. Mom always energetic, interesting ,enjoyable, and calm came with us. She followed the lives of all her grandchildren. We stopped in Harbor Springs and the girls and mom went to American Spoon to get snacks and gifts. I took Madeleine for a walk in the park. Mom called within a half hour and I went back to collect them. We went to the rest room and then proceeded on our way to Grand Rapids.

The girls and my mom played the animal game and she told us stories about when she and Grandpa bought the Red House. She explained how they had traveled around the mainland and finally decided to go over to Bois Blanc on the ferry. They looked at many houses and the last house was a red house in the Pointe aux Pines. They decided to buy it and even though there were other higher offers on the house their’s was the only cash offer. She regaled us with stories about the various drives up and the process and years involved in making it The Red House she loved.

We stayed that night at a Holiday Inn Express (pet friendly) and had Chinese food for dinner. My mom was game to stay in for dinner because we had bought the dog which she cherished with us. That night I can remember her taking out the book “driven to distraction” to read, reading a page and everyone saying we loved each other and goodnight. The next morning we got up went to get Jackie Euros for her trip and proceeded to Grand Rapids Airport. Jackie and I went into the airport. Nicole was with mom in the car and she remembers her grandma crying after talking to her very ill older sister on the phone. I remember it was obvious she had been crying when I returned, we talked about it.

On the way home we tried unsuccessfully to find a covered bridge in the area she thought would be fun to see. She was always willing and eager to do and see everything and anything. She was just fun! We finished our four hour drive back to Cheboygan. Mom treated us to a take-out dinner from a new coffee house close to where we would catch the ferry. We drove out to eat at a park on the water where we could see Lake Huron between Cheboygan and Bois Blanc Island. After dinner we went back and caught the Ferry to Bois Blanc Island.

The next few days were filled with usual Island activities, difficult internet connection (so house hunting was a pain). My mom who always wanted a dog was not so sure anymore because whenever Madeleine saw anything from their large wrap around porch she would bark. A lot of my conversation with my mom surrounded her ill very sister and if she was going to survive. She learned her sister had been moved to the hospital from her nursing home.

My parents flew to Knoxville because my mom’s sister had said to my mom I wish you could just hug me. That was all it took for my ever resourceful mom to book a flight for her and my father to Tennessee. She felt her sister had rallied during that visit but then proceeded to deteriorate after she left.

She was also concerned with my daughter Nicole who was recently diagnosed with ADD and how could we make her life happier and better. Last year she invited Nicole to spend time on Bois Blanc Island without me to help her. She arranged for Nicole to take a couple art classed with a artist who summered on Bois Blanc. As always she cherished any of her children and grandchildren being there…………we always felt welcome and at peace with her. She was our protector.

My mother was always tortured by her weight and lack of regular physical exercise. That summer we convinced her a few times to take a half mile walk with us. Each time she was very exhausted and sweated profusely. She rested a few times during the walk but was always happy she did it. Daily my dad and I were taking our eighty year old neighbor into Lake Huron in front of the house in the evening so he could swim a little. In past years my mother too would get exercise by walking in the water.

On July 14th, I remember a conversation with mom trying to get dad to let us cook, shop etc so he didn’t have to do so much work. Mom and I joked with dad about putting (the grouch) away.

I remember sitting on the porch that day with mom, Nicole and my dad. Mom wanted me to go get Nicole ice cream from Hawks (this was usually her way of getting it for herself) I explained to her that we felt Nicole was badly affected by sugar and we would allow her to have it occasionally. Then I told my father to put the other guy away (the grouch) because he was making his usual disapproving faces. She did not like this and when he offered to help put up her new curtains. She curtly shut him down.

Nicole and I eventually went down to the store “Hawks” so I could fax my offer on a house. Nicole had ice cream. When I returned with Nicole I had a conversation with mom where she led me to conclude she had come to realize if she wanted Ice cream all she had to do is pop in the truck and go get it……realizing her earlier anger was based on her long fought internal dialogue about her weight,food, and fitness.

Later that day Ed (our eighty year old neighbor),dad, mom, and Nicole went to the beach and to the water. Mom went to exercise in the water which she felt much more comfortable doing than walking on the road. I sat on the porch with Madeleine. The porch is about 100 feet from the water. There is a line of trees close to the rock beach on Bois Blanc between the road and water. My parents had built a deck on the water side of the road to sit on by the beach. Nicole came up first, having felt the water was too cold to swim too long. That day there was a strong east wind creating white caps out in the straits. The swimming area had waves but was not dangerous. After a brief time at the beach, Ed and my father walked up. Dad and Ed recounted later that mom waved goodbye and smiled. Mom smiled a lot.

My dad arrived on the porch after changing out of his wet clothes and fixing a drink. Nicole and I were sitting there with Madeleine. My father asked me if I could see my mother and I was surprised because he had never asked before; I asked him why? We all looked for her and did not see her. Because of the trees I asked can you usually see her through the trees? He said, “yes at certain spots on her walk”. Again she walked in the water about chest deep between two landmarks she had located on shore. Dad said, “I am going to go check on her” –again this struck me as extremely odd….she walked in the water all the years she had been going to Bois Blanc Island. He walked down to the beach looked around and turned toward the house called my name with his hands raised up in the air……………indicating he was mystified.

I ran down to the beach barefoot. I scanned the water where she would walk and did not see her. I looked to my left and there were her tennis shoes neatly placed on the deck where she had changed into her water shoes. She had placed her glasses on her shoes and walked in the water with sunglasses. I said to my dad, “Something is very wrong –I am going in the water!” As I progessed into the water I looked to my right and about 700 feet down the rocky shore I saw a black object with white appendages. It took me a moment to realize it was my mother. I told my dad to run…………………I had difficulty for I was barefoot and the beach was rocky. When we arrive my mother was pale, her body was lifeless,her eyes were her same beautiful eyes but without her usual twinkle. Dad looked at me and asked what to do. She was face up head on the shore her feet were in the water. Her face was out of the water. We struggled to pull her further up onto the shore.

I had tried to call 911 and said we were in front of a landmark island cottage but the people on the other end did not know where that was…………….Later I was to learn my call went to central dispatch in the Upper Peninsula and not to the local rescue squad. During this time my daughter Nicole arrived with the dog concerned about the commotion and I screamed at her to return to the house, She did. Within a minute a guy showed up who was an off duty cop on vacation on the island. He had witnessed us struggling to pull my mother further up on shore. He helped us. He looked at me and gave me the keys to his Quad off road vehicle and told me to drive down the road to the island store and get the deputy.

He began compressions….after having a brief discussion with him about whether or not rescue breathing was necessary. I drove as fast as I could unable to figure out whether or not I needed to shift into different gears………………. I was crying and screaming NO from the bottom of my soul. Soaked from going in the water earlier I arrived at the store ran inside found the deputy whose back was to me. I told him my mother was hurt and I needed him immediately. He jumped up went with me to his truck I told him where to go and he turned on the sirens and called first responders. We arrived back with my mom a mile down the road and the off duty cop who had performed compressions since I left was still working hard on my mom. He asked the deputy for a defibillator…..which it took a while to find. The off duty cop apologized to my father and me and cut my moms black swimsuit exposing her breasts. He placed a lead on her chest…and there was no response. He continued chest compressions while I started to rescue breathe for mom. After I would breathe in water and pieces of lake vegetation came out of both her nose and mouth. I continuosly wiped her face after this thinking about her vanity.

The ambulance came quickly along with the first responders, the experienced off duty police man had the back board brought to her side. We got her on the back board and got her into the ambulance. My dad stayed behind to take care of Nicole and I suspect because he had no medical training. We had to carry her up over a little grassy noll. Once in the ambulance I continued rescue breathing, the cop looking as though he had just run a marathon asked another first responder to take over CPR for a spell. I glanced around the ambulance saw the suction apparatus hoping to use and discovering it was inoperable. I learned in the ambulance that the small plane had been called to pick us up and take us the the mainland.

The seats of the plane had been removed because we could not get the backboard on the plane unless they were. The pilot was someone who knew my sister well from Mackinac Island and I told him this was her mom. He said, “oh god”. Only two of us could go on the plane so Mike a first responder, and I continued CPR on the plane. We arrived within a short span of time at the Cheboygan airport and were met by an ambulance. I assume a full code was run as I sat in the front seat of the ambulance in disbelief. This was my eternally optimistic wonderful mother who was lifeless.

I road to the hospital with my mom. I suppose I knew at the shore she was dead. I stepped back and let the medical team work on mom. When mom was in the ER I said goodbye checked her body for injury. Shortly after I arrived my sister arrived with her son Leo – they were both crying….Margaret kept feeling mom’s hands saying they are so soft…they feel like mom’s hands. I told her I was struck by moms eyes and showed her. Shock set in and remained that way. Margaret commented on the fact mom’s body was warm and she went and got a stethoscope and listened for a heartbeat…there was none. She was warm but lividity had set in so obviously no blood was being circulated.

Before we left the hospital we understood an autopsy would be ordered. Mom always wanted us to have all possible information that might affect our health. The first responder Mike who flew over and then back to the island called the ER and offered to bring his boat over to the mainland to get us. We took mom’s walking shoes with us – hopefully to examine later…..though I am not sure why. We said goodbye to mom and took Mike up on his offer. We desperately needed to be back on the island to our father and my young daughter.

The entire family arrived within days. We were able to donate my mom’s corneas to someone. She would have been happy with this. I am still amazed by the amount of things that have to be taken care of after someone dies.
My father, I suspect was also in shock……………and guilt ridden…thinking erroneously that it he had stayed on the beach he could have helped her. He drank a lot that night and passed out eventually, sleep would not have come otherwise. My sister and I watched him, talked, took care of our children and monitored my Madeleine.

Much of the next few days are a blur. My brother Mark and my husband Brian arrived the next day. Friday my sister-in-law Dawn, my brother Mike and their boys came in. Uncle Mike my mom’s younger brother the priest arrived Saturday. Mark’s wife flew in. My dad’s brother Leo, his wife Alicia, and their children Eileen, Theresa, Katie, and some of their spouses and children came. A memorial gathering was held at The Red House – where endless islanders arrived to pay their respects. Dawn, Margaret, and Dad wrote and placed multiple obits. Monday the entire family clan and Madeleine left via ferry and picked up my cremated Mom in her biodegradable box and went to Mackinac Island to bury her. We rode the ferry to the island on a spectacular day –Mark thought dad was a little wobbly with carrying mom and shadowed him. Dad said he was fine – well he dropped her – luckily the box stayed intact.

We were met by carriages which transported the twenty-eight of us to the cemetery. A graveside service was performed by my Uncle Mike(her brother) and mom was placed by dad into the ground. Tim, Margaret’s husband had collected small rocks from the beach in front of my parents home on Bois Blanc Island. Tymon, Margaret’s oldest son had given them to me prior to the funeral. I proceeded to give them to all the grandchildren and they one by one placed them in mom’s grave. I gave an extra one to Jordan (Mark’s son) for his sister Alex who could not be there and an extra one to Nicole for her sister Jackie who was in France. We hopped back in the carriages and went to the Grand Hotel for a spectacular lunch. Mom would have loved this!

Margaret, Dawn, and I took care of mom’s clothes at dads request. The next month I spent walking to the dock and back with my dad. Appreciating nature with a new perspective as he pointed out what mom loved. I watched him raw with pain sob for her and hisself. And I cried for her and myself. One of the things he was most frantic about was changing the beneficiaries from my mom to his four children per stirpes, we were able to get this accomplished and on that day he breathed a sigh of relief and actually began to grieve slowly.
I worked with my father as he learned to pay bills online – often frustrated by the process. He learned to email. He learned to use her Iphone. One of the saddest moments I witnessed was when he opened her Vanguard account and it had all zeros- her life savings had become his. We cried.

She was a wonderful, loving, intellectual who was eternally optimistic about everyone. She touched us all…we all felt loved by her and loved her.
As we now search for tombstones it is hard to know what is right – she was so accomplished and such a loving mother. She always had time for us and our children. We were all so lucky. Our advisor, friend, confidant is gone we all miss her so…………………is this real?

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.