Epilogue

I started this story with the intent of educating, informing and mostly to expel it from my brain. I needed to write it to understand what truly happened to me and to look forward and let it go. So here we are at the end of this entire event.

After 17 days, my sister and I left Mass General and returned to my house. It was just us. I chose not to answer any calls or texts and just wanted the quiet of my home with the one person I needed most. We sat quietly for a long time, had a great dinner and settled in. I took a real shower and found some pajamas that would maybe not fall off me after all the weight loss. The next day was pretty much the same. I intentionally planned no visitors and once again kept calls and texts to a minimum. It was just what I needed.

Now here we are almost 3 months later and I am on the road to recovery. I have had setbacks, mostly caused by the combination of meds I’m taking. The team of Doctors I had still monitor and have meetings about my care and future. Last week I had some CT scans to look at the actual cancer since we sometimes forget with all the near death drama that the cancer still exists. The scans showed one of the tumors remains unchanged. The other tumor has grown slightly but it’s considered minor. There has been no spread and no new tumors. This is pretty good news. As bad as the immunotherapy was, it does appear to have done it’s job.
So what do we do now? There was a brief discussion about starting a different immunotherapy combination. I knew this discussion was coming and had decided to at least listen to what they had to say. Luckily for me, the oncology team was not in favor of this plan…and neither was I. It may have been great and wonderful and all but no part of me wants to tempt the hands of death a second time. The next suggestion was to operate now and remove the section of the pancreas that has the tumors. However, my recovery has been slowed by some issues that make it not an optimal time to do this surgery. So the final option was the best choice.

We will take the next few months to let my body continue to heal and hope that some of these issues resolve. We will do scans again at the end of August and see where we are. The hope is that the tumors will remain stable (minor growth is ok) and that nothing new appears. If that’s the case, we will move to surgery in late September or October. This was to me the best choice. No part of me wants to destroy my summer with 10 more days in the hospital with a month or more of recovery at home. I need the pool and the secret beach and all that summer brings. I would be a basket case cooped up in this house for the summer!
So for now, this saga comes to a close. I hope you “enjoyed” the good, bad and ugly parts of the story and found humor where I intended it to be.

Thank you to every one of you that have commented and reached out after reading the chapters. Your words of encouragement continue to inspire me to beat the shit out of this cancer!

Chapter 10 Gratitude

I have struggled to find a word that can adequately describe how grateful I am to the countless people who helped me along this journey. Gratitude is the only word I can find.
Over the 17 days I was in the hospital, I made it a point to thank every single person I came in contact with. This included the transporters (Kuhmari) that took me for tests, the guy in the elevator who’s whole job every day was to ride up and down, sitting on a flimsy metal bench, stopping at whatever floor you were on to unlock the hallway doors. I made sure to thank the guy who dusted everything in the room, the woman who dusted and washed the floors, the lady who emptied the biohazard jug, the girl who emptied the trash. I even thanked the IT guy who changed out the hard drive on the computer so the label maker would work.
I thanked Michael, the very nice man who gave me a leg massage and Phoebe the comfort dog who laid on the bed with me and had the most soulful eyes.
I allowed two student nurses to work with me, Stephanie and Andrew. They were great and it was my pleasure to allow them to learn from me.



The nurses…
Donna, Gage, Lucy, Tina, Michelle, Lindsay, Suzanne, Carlos, Lauren, Emily, Sophie, Kat, Valerie, Kayla, Amy, Leah, Heysel, Maddie, Jill and Jo.
There really are no words to describe how incredible these people were. Kind, caring, smart, funny, oh so capable, loving. They made some of my worst moments better and also enjoyed going along with my stories and jokes. I may have missed a name or two but I tried very hard to get them all.
The PCA’s…
Maria, Jayla, Thomas, Afra, Megan, Tessi, Lorraine and my little Kyleigh. At one point, one of these folks stated “I’m just a PCA” as if that meant she was a lesser being. I made sure to remind her that being a PCA was a very admirable thing and that she should be proud of what she does as it is just as important as what everyone else does. She cried.
The Doctors…
There are far too many to mention. But there are some that I can not let go unnoticed. Dr.Zlotoff, my cardiologist. He asked me for the privilege of being my cardiologist. Dr.Kournioti and Dr.Saylor, my oncology team. Dr.Love, my PCP. And of course, Dr.Bennett Caughey. One of the hospital oncologists, broke my heart. It wasn’t me, it was him!

And now for the friends and family that helped me along the way and continue to support me every day. I’m not sure where I would be without you.
I keep a fairly small circle of good friends. I have always believed that quality is far better than quantity. So to Linda, Ruth, Donna, Jackie, Dennis, Maryann, Sarah, Greg, Laurie, Paul, Nathan, Tanya, Cyndi, Tommy, John W, Gary, Harry, Sean, Ben, Beth, Mary, June and of course Stan! You all come from different parts of my life yet you are all part of this special group.

And then there is the “chosen family”. The people very close to me that have become an integral part of my life for at least 25 years up to and over 50 years. These are my ride or die people. Maryanne-my other sister. Larissa and Chris-neighbors that became family. Tracy-my spirit animal, she gets me. Mary Beth, Karen, Roberto-Bentley was never the same without us. Tommy-a man of mystery who with his dry sense of humor, makes me laugh more than anyone. Jay-3000 miles away yet in my heart every single day. I love you most. Alison-who does a perfect fresh cut and we laugh at the best stories. To Donnie, who’s friendship with me all these years has been the best decision he ever made!

And to my family…Amanda,Michael and Myles, Brittany, Bonney, Ron and Jackie and the kids. John. We are a small but mighty team and I have felt your love through this entire journey.

To Rick and Brady…it has not been easy seeing “mom” drop everything and head for Boston at a moment notice. I know this has been hard on you guys. Thank you.

And to my sister Cathy…where do I even start. Sisters for life that have endured many ups and downs over the years (as sisters do) I could not have done this without you. Being so far away was not easy for either of us. You were there when I needed you most as I would be for you. Nothing else matters. However, your cabbage cruelty knows no limits. Thank you and I love you.

Chapter 9 What’s next?

Lest we forget that with all this life and death drama, the cancer still remains. More importantly, it remains untreated. When last we looked at it in March, the tumors were stable, no new tumors and the two known tumors had not grown. This is good news. But what can we do about this?
I am not a candidate for any more treatment. There will not be any chemo or immunotherapy treatments. My body will not tolerate it and I have been through enough. No part of me wants to temp the hands of death a second time.
From what I am told, the only treatment for this now is surgery to remove the tail end of my pancreas and my spleen, taking the two tumors with it. If you recall, this was the original plan oh so long ago but was postponed first for me to lose weight (did that!) and then because the cancer had spread.
Currently, I am not a candidate for surgery because of the myocarditis heart condition. This is a difficult surgery for someone who has no issues…it’s borderline dangerous for me at this time. So we wait.


I have an MRI and a CT scan scheduled for June to check on the status of these tumors and can only hope there has been no change. I can also hope that the myocarditis settles down and I am in a better physical place soon to be able to survive the surgery.

And lets face it…I’m not sure how well I can manage another roommate for days on end!

Chapter 8   The Stats

Over the 17 days I was a patient at MGH, I had countless tests, scans, pokes, prods and procedures. I kept track of as much as I could…mostly for the fun of it and I had nothing else to do!

So here you go:

5 MRI’s- 2 Brain, 1 Heart, 1 Upper Abdominal, 1 Lower Abdominal.

5 CT Scans-1 Brain, 2 Chest, 1 Upper abdominal, 1 Lower Abdominal.

5 Echocardiagrams

3 sets of chest X-rays

1 sigmoidoscopy requiring 2 enemas…as if I really needed that!

10 separate IV’s over the 17 days…2 of which blew during procedures thus requiring emergency IV insertion=pain!

Over 200 needle sticks for blood draws.

Lost count of how many pills I took but my morning meds were over 30 pills…so do the math!

The stats I don’t have yet are the costs of this adventure. I can tell you that just one of the meds I take twice a day costs over 17 thousand dollars for a 30 day supply. The Keytruda infusion that nearly killed me cost over 25 thousand dollars for one infusion (I had 3). The daily immunotherapy drug Lenvima was over 15 thousand for a 30 day supply. 

What do people without insurance do? I am very fortunate to have a very good insurance plan that has paid for all of this. I have not gotten the hospital charges or the doctor’s fees. I can not imagine what the total will be… 

But all of this added up to the most important thing…I survived!

It’s hard to fathom (pun intended) that as a child I was terrified of the water.  But it’s actually not that surprising. I had terrible eyesight and at the tender age of 3, I started wearing glasses. 

My parents had a small cabin cruiser boat that was docked at a marina in Quincy and we used to take it out in the harbor on weekends. I was terrified. They went too fast, they drank too much and I always held on for dear life from the moment I got on the boat until I got off. I never went in the water. It was over my head and I could not see. In a moment of sheer madness, my great uncle John decided one afternoon that the best idea was to pick me up and throw me over into the water. That would teach me not to be afraid…

Well that didn’t really work out for many years. When I got to be a teenager, I was not afraid of the water but I wasn’t very good at putting my head in the water and blowing out my nose. I eventually learned. 

Here we are now and for me, water is life. When I swim, I am not the person who gradually enters the water and acclimates. I am the walk right in and plunge head first kind of gal. It does not matter if it’s a pool, a pond or lake or the ocean. I’m in. Over the years, I have always felt that I needed to get my head in the water to, as I put it, “cool my brain”. This comes from years of a very stressful career in public safety. 

So what does any of this have to do with my recent hospital adventure? Well I will tell you! I was told on a particular Saturday that I would be going home. I was so excited to get out of there and get back to my home and family. That morning, Gage the Nurse Practitioner came in and delivered the bad news. I was not going home. My troponin levels had gone up after days of a steady decline. A new medication was in the plan and I could not go. I was devastated. Truly. 

So Gage and I had a discussion and I told him I wanted to take a shower. I wanted to be left alone and not have someone knocking at the door every 5 minutes to ask if I was okay. I wanted to sit on the shower chair and just let the water run over me for as long as I wanted. And I did. I don’t remember how long I sat there but it was for awhile. After I got done and dressed (clean johnny!) I was back in my recliner for the day. I had a brief text exchange with my niece about this experience and she pointed out what was really going on…smart woman that she is!

This was my way in that moment of washing away all that had happened to me. Of cooling my brain from the stress and worry of the situation. Of bringing me back to the water where I find the most comfort and joy. Of giving me the strength and resolve to carry on. A week or so ago I was thinking about this and another light dawned on me…something so obvious but that I had never even thought of. 

I am Aquarius. The Water Bearer. 

So now we ask what does Water for Elephants have to do with this? Nothing much really. Elephants will travel long distances for water and never forget where it is. I would to. But truthfully, there was a really good book that came out several years ago that was the smash summer read that season. It was called…

Read it.

We interrupt the crazy cancer story to bring you this cool story about an item that was lost…

I have always admired a signet ring. I think they are very classic and timeless. I always wanted one but could never find a design that I liked…or could afford. But I was determined. So thinking it might be a nice gift for my 50th birthday, I started saving toward the goal. I had searched for years for just the right design but had never found one that appealed to me. And then I saw an add in Cape Cod Life Magazine for a goldsmith in Nantucket who had quite a few designs in her collection.

Her name is Susan Lister Locke. To make a long story shorter, I took the ferry to Nantucket and walked about a mile out of town and met her at her home studio. I had spoken with her and told her my story and she was so welcoming and helpful to me. I chose the ring I wanted and then the engraving style. We chatted for awhile and then I returned back to the mainland and drove home. It was quite a day. About 5 weeks later, the ring arrived and I was thrilled. I loved it and it looked incredible.

For 17 years I have had this ring and have received so many compliments over the years. And then in January, I lost it. I was devastated. I had lost so much weight over this past year that the ring just easily slipped off. I never thought to take it off for safekeeping. Silly me. I truly believed I had lost it outside on the day of a big snowstorm in January. We had close to 2 feet of snow. I had imagined that the plows had taken it along as they plowed the street. It could have been anywhere, tossed up on a lawn or in the bushes or even worse, down a storm drain, never to be seen again. Of course I looked all over the house but keep in mind I was pretty sick by then. Friends and family looked under every piece of furniture…several times. It was nowhere. It was gone.

Then I had the near death experience. When I came home, I decided to reach out to Susan and inquire about the cost of replacing the ring. The price of gold 17 years ago was significantly less than it is today. I was prepared for that. The original ring was big and chunky and beautiful. But my hands are much smaller now. After looking at the various designs, I chose to get a smaller ring with a different shape. It would look much better on my hand. Susan remembered me well and was sorry to hear about what had happened to me. But she was thrilled that she could make a new ring for me that went along with my new life. So the deal was struck and my new ring is being made as we speak.

I went to the basement this morning to do a load of laundry. I have mats on the floor that get dirty and lint gathers around. I decided to pull out the vacuum cleaner and clean the mats and get the lint out from under a set of stairs next to the dryer.

And I saw it…sparkling in the dark! The ring! The vacuum hose was about 5 inches from sucking it up…forever to be lost. But I shut it off and stared…not believing what my eyes were seeing. I never once thought to look here. I was convinced it was outside. I picked it up and stared at it. It was beautiful. It will always be beautiful.

It will be retired for now as it is just too big to wear. I will make sure this one and the new one are properly insured so that if anything should happen…

This seems to be an incredible year for me…I am so lucky to have survived, and lucky to have found this ring. Now I should play the lottery! Cheers to me!!!

Chapter 6 Roommates

The Ellison Building is one of the older buildings on the MGH campus. As such, it still has small rooms that have 2 patients per room. This is not ideal for many reasons. When I arrived, I had the luck of being placed in a room with a bed by the window. On the 16th floor, the views of Boston were beautiful.

My first roommate was a very elderly Asian woman who I believe had lung cancer. She was very weak and struggled to clear her lungs. It was painful to listen to. There is an interesting Asian culture that apparently says your family must spend all day every day with you. She had 2 daughters who would arrive at the start of visiting hours (9am-9pm) and stay all day and evening. They would sit there all day, just staring at their mom. They were very pleasant and very quiet and I felt bad for them as it was clear to everyone but them that mom was slipping away. They had some grand idea that mom could go to assisted living. Two days after I arrived, mom went home to hospice care. I hope she passed peacefully.

And then the family from hell arrived.

Eunice was a Korean woman with liver cancer.
Her husband was Peter. She had a son, daughter and daughter-in-law. Visitor “rules” say only 2 people at a time can visit. Just their family alone was over by 2. But the “rules” did not matter…to them or the staff.The hard part about this family is that they were very nice people, just absolutely ignorant of the fact there was another person in the room.

Peter was a born again Christian who tried to convert almost every person who came into the room. He was a Pastor at some local church. They prayed a lot over Eunice. They also had this bizarre thing about standing behind her bed and taking pictures of everyone. They did this with all of their visitors. The 9-9 visiting hours meant nothing to them. The 2 person limit also meant nothing. One morning, the son arrived just after 7am…one night Dad did not leave until 10:55pm.

They would arrive with backpacks and laptops, grocery bags from Whole Foods, small coolers and an assortment of stuff I could not see. All of these bags and such would end up on the floor along the wall across from the foot of her bed. There were not enough chairs for them so they took the one chair from my side and also sat on the floor. One of the chairs would be placed next to her bed, right in front of the bathroom door. This made it difficult for me to get into the bathroom as someone always had to move. It was very uncomfortable for me. They were apologetic and moved quickly…sometimes not fast enough. If you recall, one of my issues was that I was unsteady on my feet. This made navigating the bags and coolers more difficult. Again, they would apologize, move things but then just kept doing it. It is not a stretch to say I tolerated WAY more than was necessary. But I also had to share this room with these people so I tired to live in harmony.

Every afternoon, groups of people would arrive to visit. Some were family, some were friends and then there was the groups of young church people. At times, there could be over 10 people jammed in the room. One afternoon, I had gone for a CT scan and when I returned, 9 people had to leave the room so I could actually walk back in. This was just unnecessary. And lets not forget I looked like crap, ass cheeks hanging out the back of my johnny, trying to navigate the obstacle course back to my bed.

They had parties. The first one was a gourmet donut party. A group arrived with 2 dozen super fancy donuts and they all whooped it up and enjoyed. They did offer me a donut…I declined. These afternoon visits would last for 3-4 hours. Eunice never got any rest. Neither did I.The gelato party…this was the day of my chest pain attack. If you recall, I was put on bed rest for the day. A group arrived in the afternoon with fancy gelato for the family. Once again, the group was loud and large and had no regard for the fact I was trying to rest. It’s not like Eunice and Peter did not know what happened to me…they were there!
The final event was the live stream from Korea gender reveal party of the first grandchild. This was a big deal. The room was packed. The group was loud. The staff did nothing. I really tried to respect their culture and allow them to celebrate but seriously? There was a family room on the floor. Eunice could have gone with her family to that room and had plenty of room to celebrate. But as much as the doctors and nurses encouraged her to get up and walk, she barely did. She also complained about being tired. Really?

There was a night when there were so many people and so much stuff on the floor that there was no way I could get past all of this. I called for my nurse. I sat on my bed patiently waiting for her, hoping I would not lose control. Tessie the PCA arrived and in one swift moment, cleared the gauntlet so I could get to the bathroom. This was the last time I was going to be nice about this. I had no privacy, no dignity, just large groups of people watching as I tried to make it to the bathroom.
And then the following day it all erupted. There was as usual a large group of visitors. It was dinner time. The nurse supervisor came in and told the group that the limit was 2 visitors and everyone had to leave. Peter was shocked…said he had been given “permission” to have people because he was special or something. He got very defensive and asked where the complaints were coming from. The obvious answer was from me. But I had not made any formal complaints.
The supervisor left the room and then their evening nurse came in. He then told the family that security would remove them if they did not comply. It was intense. After he left, I got up and went over and told the family that I had no idea what just happened and that I had not complained. I’m not sure they believed me but at this point I did not care.

So everyone but Peter left and then he began what was his nightly routine at 8:45 pm. He would summon the nurse and begin asking for Eunice to get her morphine dose. I know everything about this. She could have a long acting dose and a short acting dose. Peter would then ask the same questions every night. He would then begin to eat his dinner…at 8:45pm. Early on in her stay, Peter might pack up and be gone by 9:30. Or 10, 10:30…11:00. Nobody made him leave. This was just so wrong. I blame him but I also blame the staff. They made all these threats and did nothing. I came to learn this was not the first time the staff had dealt with this family. In previous stays, they had the same issues.

We live in a world of no consequences.

In a fun little twist, they knew I was leaving and asked to be moved to the window bed. Request denied.

Chapter 5 The Attack

It came out of nowhere…no warning. This was maybe 7 days after being admitted.

I was sitting in my recliner pouring milk over my Cheerios when all of a sudden, burning chest pain shot up the left side of my chest. I had not had any chest pain ever. I knew this was not good and rang for the doctors right away. Within seconds a well choreographed team of doctors and nurses calmly entered my room and began treating me right away. They began vitals checks, put the 12 lead monitor on me and watched closely as they read the EKG. The pain was intense…maybe a 6 or 7 (yes, 6-7!). They gave me a nitro and then a second one. It’s not pleasant. If you are having a heart attack, nitro helps open up the blood vessels so you have better flow through your heart. It turns out I was not having a heart attack. I was having a myocarditis attack. This was good I guess.

The pain was still bad but starting to recede. They gave me a shot of Dilauded and of course I got a little woozy. The cardiologist told the nurses to get me up from the chair and into the bed. And in a matter of seconds, they had moved me into bed and got me as comfortable as possible. I laid on my side as that was the most comfortable and they put some oxygen on me as well. It took awhile but the pain finally subsided and I was told to just stay in bed and rest.

I’d like to say I was able to do that but many factors got in the way. First of all, the vitals checks were frequent. Cardiologist visits, portable chest x-rays, portable echocardiogram, and my own fears about what happened and would it happen again?

And then there was the gelato party…

I’ve thought long and hard about writing this chapter. It deals with events that are personally devastating to me. But the truth is what happened to me was all part of the experience and should be told.

About 4-5 days into my stay, I began to experience urinary incontinence. Never had this been an issue in my life. What I noticed was as soon as I would stand up, I would have no control at all. I also had no warning…no feeling of needing to go. One accident and I’m relegated to Depends. I would live in them for the duration of my stay. I tried to anticipate my bathroom needs and sometimes I could make it and sometimes I couldn’t.

And then it was my bowels. Same thing. No notice, no feeling of needing to go. Just stand or sit too long and it happens. It was awful. And then it got worse. One night, I woke up in he middle of the night to the entire contents of my bowels simply pouring out of me. I have never been so horrified in my life. I was also petrified…this is what happens when you are dying. I rang for the nurse right away and two angels swiftly arrived at my bedside. With grace and dignity, they quickly went about the business of cleaning this up and cleaning me up. It was quick and efficient. When they were done, one of them sat on each side of my bed and cried with me, rubbed my back and held my hand and assured me this was normal and that they see and do this all the time. No amount of reassurance could make this better at that time. I was humiliated.

Although I never had that particular event happen again, I did experience severe incontinence throughout my stay.
I learned something very valuable that night. No matter how tough or bad ass you think you are, you are no match for your body. You will surrender. You have no choice. You will also recover, eventually.

The Diagnosis

So what really happened here?
The Doctors knew early on what was happening, they just did not know why…or how to stop it. We were certainly aware of the known and visible side effects I was having, what I did not know was what was happening that I could not see or feel. The Keytruda went to war with my immune system and knocked it out for the count. My immune system tapped out and laid helpless on the mat while Keytruda steamrolled over it.
Every system in my body was affected. My organs were all enlarged and inflamed and shutting down. Most serious was the enlarging of my heart combined with fluid around the heart that was not draining, My lungs, kidney, liver, pancreas, upper and lower gastrointestinal system, my eyes, my skin, my muscular/skeletal system. I was being treated by 10 different “ologists”. An incredible team.
The problem here was what exactly was the diagnosis. It could have been a few different things. The condition could not be treated until we knew for sure. If they guessed wrong and treated me for A and it was B, they could cause more damage. I needed a highly specialized cardiac MRI. It took 4 days to get that done. There is a waiting list over 90 people long for this MRI…people waiting months. It took some serious string pulling to get me in and it still took 4 days. Time was kinda critical.
The final diagnosis was myocarditis*.
Now that we knew, we could start treatment. Aside from an assortment of pills, I began a course of IV steroids in the form of Solumedrol and Magnesium. These drugs were focused on bringing down that all important Troponin number. I also got shots of Lasix to help drain off fluid as fast as possible. That was fun.
After 3 days of IV steroids, we switched to oral steroids in the form of Prednisone. And then we ran into complications. Oral meds are not as powerful as IV meds so the Troponin numbers started to rise again. Many discussions took place on what to do. Was there another treatment we could try? There was BUT it would have been more dangerous to my already destroyed immune system. Such a balance. We waited it out. The numbers would drop for a day or two and then rise again. The keys was not having the fluctuation in the numbers. Keep in mind the original Troponin that got me to MGH was around 700. In the hospital it rose as high as over 1800. Yikes.


*Myocarditis is inflammation of the heart muscle, called the myocardium. The condition can reduce the heart’s ability to pump blood. Myocarditis can cause chest pain, shortness of breath, and rapid or irregular heartbeats.Infection with a virus is one cause of myocarditis. Sometimes myocarditis is caused by a medicine reaction or a condition that causes inflammation throughout the body.Severe myocarditis weakens the heart so that the rest of the body doesn’t get enough blood. Clots can form in the heart, leading to a stroke or heart attack.