The Winter of Our Discontent

It’s taken me awhile to get to this next chapter. Not because I’ve been lazy or have lost interest or anything like that. The story goes places that are difficult to describe. The story is also deeply painful. I have tossed and turned this over and over trying to settle on a way to keep it real but to also protect feelings. It’s not just about me.

After Bill passed, my sister embarked on a new life. It was her path to carve and one she had been pondering for awhile. She knew that when Bill passed, her life would change. She was still young and vibrant and did not want to curl up and die. I understood that. Decisions and choices were made. And many of these choices would impact our relationship in ways I could never have imagined. We were on different planes on this and struggled to understand each other. Neither of us was right. Neither of us was wrong. We are two and a half years beyond the death of Bill and we still struggle to understand or accept each other’s view. We have admitted some of our faults. We have each accepted some blame. We are very different in how we view various issues. But we are a work in progress. She is my sister and I will never be willing to let that go.

 

The Long, Hot Summer

I pretty much recovered from losing a kidney…physically. The toll on me mentally had yet to rear it’s ugly head. I really didn’t have time to dwell on it or recognize that there was more to it than just simply cutting out a cancerous organ and throwing it away.

Summer was soon to be upon us. It’s not necessarily my favorite time of the year. Although I love the idea of being out in the sun and fresh air, the fact that heat and humidity is part of the deal is for me, the deal breaker. I hate heat. I despise humidity. I can really only survive it being trapped inside with air conditioning. Or being in a pool or any body of water. For the last many years, I would travel north to the great state of Maine and hang by the lovely pool at my sister’s house. For the 4th of July, we would attend the annual Taylor family cookout at the family cottage along the shore of Lake Messalonskee, one of the Belgrade Lakes. But this year would be different…

On the 2nd of July, my brother in law Bill suffered a catastrophic event. His advancing prostate cancer wormed it’s way into his spine and in the blink of an eye, paralysis struck. He was completely unable to move from the waist down. It was awful. And so totally unexpected. He was rushed from Waterville to the hospital in Portland with the intent of having emergency surgery in hopes of reversing the paralysis. This turned our world upside down. While my sister rushed to Portland, I drove to Waterville to tend to Lucy and Buzzy, take care of the pool, do some laundry and pack a bag for her. I then drove back to Portland to be with her for a few days. We “celebrated” the 4th of July by standing on the roof of the hospital parking garage and watched the fireworks from the Sea Dogs stadium. Not nearly as spectacular as we were used to but everything was still really just a blur. In the days following the surgery, it was clear that reversing the effects of the paralysis was not in the cards. It was so shocking. It was so unexpected. It was so sad.

Bill remained in the hospital in Portland for a few more days and then was sent back to the hospital in Waterville to continue to “recover” from the surgery. What faced them now was so daunting. Wheelchairs? Handicapped ramps at home? Full time care? What the hell was going to happen next? It was a long Summer. I spent every other weekend driving back and forth to Waterville just for the purpose of being with my sister. I did whatever I could around the house to make it a little easier for her. Every moment she was not at work was spent at the hospital, navigating his care and his future. For one brief moment, it was thought that Bill could return home and move forward from there. Are you serious???? A handicapped ramp was built for his wheelchair so that he could get in and out of the house. He was brought home one day just for a visit to assess the house and the potential for him to be sent home. It was heart wrenching. And it was very clear to my sister that he could never come home again. Bill missed his Lucy and Buzzy almost more than anything. So we brought Buzzy to the hospital for a visit. You can do that. Lucy missed Bill terribly but she was not a candidate for a hospital visit. Everything about this cancer sucked. It was so unfair. But it would get worse…

As the Summer days wore on, it became clear that something else was happening to Bill. His cognitive skills began to change and diminish. The cancer spread up his spine into his brain. Really? Prostate cancer never does that. Except it did. In mid-August, Bill was moved into a nursing home. It was awful. My sister did everything she could to manage his care and fight for better treatment for him. She was determined. But some things are out of your control. We could see what was happening to Bill. We knew his time was ticking away. He was sent back to the hospital for some medical issue. He would not go back to the nursing home again. I continued my trips and did what I could. I would visit Bill in the hospital sometimes but not always. It was so hard to see him suffering. It was in these moments that my cancer story reared it’s ugly head for me. Again, how could I have been so lucky? It was so “easy” for me. Cancer? No problem, just cut it out and be on your way.

I was about to leave on a 6 day sailing trip at the end of August. I had given serious consideration to cancelling the trip because Bill’s days were coming to an end. But it was decided that I should go sailing. I went to the hospital to visit before I left for the trip. I told Bill I loved him and he said the same to me. I walked out of the room. I would never speak to him again. I sailed away and returned on August 31. Bill was still alive but was on his journey to another cosmos. I did not go to see him, I didn’t want to. I stayed with my sister through the Labor Day weekend and headed home on Tuesday afternoon. Bill passed away while I was driving home. It had been a long, hot Summer and now it was over. There was no more pain and no more suffering…for all of us. A new and very different life was about to begin…and I was not prepared for it, at all.

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Things that go BOOM in the night…

In the days immediately following the Marathon bombing, a flurry of activity continued to swirl around the event. Plans were made to honor the victims and the survivors even as the entire area surrounding the finish line remained locked down and under the control of the FBI and numerous Federal, State and Local agencies. The amount of evidence being gathered was mind boggling. Mayor Tom Menino stood tall for his Boston and made sure everything possible could be done for the families of the victims and survivors. He also worked to help the countless runners from around the world who were not able to return to their hotels or the finish line area to retrieve their personal items. I continued to heal from the surgery I had just two weeks prior to this event.

On Thursday April 18 at approximately 5pm, the combined task force members, headed by the FBI, held a press conference. It was at this televised event that we got out first look at the evil that was responsible for this horrific event. In this day and age of technology, the amount of video footage available to the investigators was astounding. Even more astounding was the ability of some handful of men and women tucked away in some dark room somewhere that looked at hours and hours of private camera footage to find the faces of evil in ALL of the film they looked at. It was these “blown up” photos that were presented to us by the FBI. We were asked if we knew them? Did they live near us? Were we friends with them? Would we turn them in?

Who were these faces of evil? It would not take long for us to find out. Tragically, it would cost one more life, almost cost another life and create more victims over the next 24 hours. A college campus would be the site of an assassination. A small sleepy suburb would be lit up in the middle of the night. Terror would once again visit neighborhoods. Unprecedented steps would be taken to neutralize the faces of evil.

At approximately 10:20pm, MIT Police Officer Sean Collier would be ambushed and killed as he sat in his patrol car doing the job he loved the most. We could not know at that time that there was a strong connection to the Marathon bombing. I was sitting on my couch watching TV and listening to my radio. Once again, not really listening…it was just on. I heard the broadcast of the murder of Sean Collier over the radio. Shortly after that, there was a report of an armed carjacking in Cambridge. Were these two events related? Did it have anything to do with the faces of evil?

Shortly after midnight, my radio exploded with some of the worst transmissions I have ever heard. I could hear the Watertown Dispatcher (note singular not plural) doing his absolute best to keep up with the transmissions of his Officers as they encountered the faces of evil on a quiet little side street in a quiet little neighborhood in Watertown. Nobody could have ever predicted this. And NO AMOUT OF TRAINING can ever prepare you for this kind of attack. I don’t care who you are or how long you’ve  been in the business, this shit just doesn’t happen here. But it did. The bravery of the Watertown Officers, the overwhelming response from surrounding agencies in those early moments was unprecedented in this area. In the Dispatch world, we have a system that allows for your 911 calls that can not be answered to bounce to an adjacent community so that they can answer them. The backup for Watertown is Newton. And the calls we took in those initial moments would curl your hair. The 3 Dispatchers working in Newton answered countless 911 calls in those first few moments. One of those calls was a woman who could see everything from her second floor window. The Newton Dispatcher kept her on the line for some 20 minutes as gun shots flew and bombs exploded. The Newton Dispatcher was her lifeline as she sat alone and terrified in a back room of her apartment as the world she knew came crashing down around her. I sat on the couch through the night listening to the search for evil. I wanted to be at work, doing what we do. But again, I was not able to be there. And I felt terrible.

Like everyone in Eastern Massachusetts, I “sheltered in place” while the hunt for evil continued. We knew one was dead but where was the other? We were all glued to the TV throughout the day wondering where evil was. Did he get away? Did he have help? Was he in my back yard? It would be a very long and difficult day for the public but an even more arduous day for ALL of the law enforcement personnel that responded to Watertown to search every inch of a large area looking to find the remaining face of evil. It would take all day and into the night. And it would take a humble quiet man who stepped out of his house for a cigarette and noticed the covering on his boat was not quite right. When he climbed a ladder and looked into his boat, what he saw would shake him to the core. The hunt for evil was over…we knew where he was, he just needed to give himself up. It would be a few more hours and a few more bursts of gunfire before evil was neutralized. I have never been more proud of our law enforcement officers than I was that night. But I felt so useless, unable to be there when I was needed the most. It was something I struggled with.

And then I ran into Tyrone. We all know Ty, we all love Ty. There was no better TV moment than his smiling face as evil was captured and taken away. He became a bigger celebrity than even HE could imagine. When I saw him, I told him I was proud of him. I had know Ty for close to 40 years and had worked with him for over 15 years. I told him he did his job and he did it well. We were chatting and I told him how I felt bad for not being able to do my job at the moment I was most needed. Ty stopped me from saying anything more and simply said to me, “You did your job, you trained ALL of those Dispatchers that were working that night. Don’t you ever doubt how important you were when the shit hit the fan”

Thank you Ty. Your words made all the difference and will stay with me for the rest of my life.

 

Marathon Day

Marathon Day came on Monday April 15. It was a beautiful Spring day. One thing you should know about the Marathon. For Bostonians and all those that live in the Commonwealth Of Massachusetts and everyone in the general New England area, Marathon Day is special, very special. It was “Patriots Day”.

It is the day the heralds the arrival of Spring and brings us out of our homes and back into the world from a winter that is often harsh. It is a day where the only morning baseball game in all of Major League Baseball is played. It is a day when eating sausage, peppers and onions on a roll on Yawkey Way at 9am is oaky because after all, sausage is a breakfast food. People pull out their shorts and bare their pasty white legs to the world in hopes of getting a little color as they sit in the roof top seats at Fenway or find a nice spot along the Marathon route in the miles of greenway that cover Heartbreak Hill. It is the day that people flock to the corner of Washington St and Comm Ave in Newton to hang with the men and women of the Newton Fire Department and buy hot dogs and chips to support Muscular Dystrophy. It is the day that long before dawn, Minutemen muster in places like Lincoln, Maynard, Stow, Lexington and Concord and re-create the battles that gave us our true independence. It is the day that will always be known for the “shot heard ’round the world”.

How were we to know on that beautiful Spring morning that a day that was always so festive and fun would become the worst case of domestic terrorism our nation had ever seen. In my little corner of the world, I was still recovering from surgery. I was doing well but still moving a little slow. As was customary, my sister had come to visit for the weekend. We were not able to do all the fun little adventures we liked to do because I was still on the disabled list. But we made the best of it and did what we could. Unfortunately, she had to return to Maine a day early to attend to her husband and his progressing prostate cancer. So I sat on the couch and watched the Sox game and then the Marathon and took it easy. My coworkers were working hard all along the route in Newton, keeping the crowds at bay as the masses of runners came through and faced Heartbreak Hill. I was listening to my portable police radio. Well, I wasn’t really listening, it was just on in the background.

And then everything changed. Explosions were set off at the Marathon finish line. There was panic and chaos. And there was carnage, lots of carnage. Unfathomable carnage. I now payed much closer attention to my radio as I watched the “Breaking News” and “Developing Story” reports on TV. In an unprecedented move, the Marathon runners were stopped along the route and not allowed to continue into Boston. I listened as our command staff barked orders out to Officers and Dispatchers making sure to keep everyone along the route safe. I wanted to go to work and help…but I couldn’t. It was hard.

We all know what happened that day. “Boston Strong” was born that day and would become the slogan of our Nation and of the World. We were Boston, we were strong, we were Boston Strong. How could we ever know what was to come in the ensuing days and how strong we would have to be?

Under the knife, under the weather, under the gun.

So as I waved goodbye to my dreams of being Twiggy, I prepared to go under the knife and get rid of this cancer ridden organ. (OK, I didn’t want to look like Twiggy but you get the idea)

I began telling friends and family that the bypass surgery was off and I was preparing for a much more serious operation. Of course people were stunned. It was at this point, I found out who wasn’t in favor of the bypass surgery even though they expressed support in the beginning. I can handle honesty even if I don’t agree. I struggle with lies, no matter how well intended. I knew that those that “lied” did so out of what they felt was kindness. It was really caused by lack of knowledge of what the process was and would be. But it is what it is and I moved on. I had bigger issues to face.

Knowing that there is cancer infecting your body makes you want nothing more than to have it gone. NOW. Not tomorrow, not next week or next month, NOW. And I pressed the surgeon to make this happen as quickly as possible. I was able to get a surgery date of April 2. That was less than one month after the initial diagnosis. I can be very persuasive. The surgery would be long and in some ways, very delicate. It would require two surgeons. There are a gazillion blood vessels that are attached to your kidney and each one needs to be cut and cauterized.

I went into the hospital on Tuesday April 2. I had a friend drop me off and I went into this scared and alone but trusting I would be okay. My sister had wanted to come and be with me. But her own struggle with caring for her sick husband meant she could not get away. She even considered taking the train down from Maine, spending the day with me and going back at the end of the day. The timing (2pm) of my procedure meant that was not really possible. I know she was torn about this but I understood and it was okay.

So the time came for the trip to the OR and off to sleep I went. If you’ve never had surgery, let me just tell you that Versed is your friend! It’s the drug they put into your IV to send you off to sleep. It feels good in those moments before oblivion. In fact, you could take me to the parking lot for the surgery and I would smile and say, “okay…”!

Some time around 8pm, I woke up in the recovery room. The procedure had taken almost 5 hours. I felt fine. Well, as fine as you can feel in a recovery room. I had no pain. I was quite comfortable and drifted right back into sleep. Apparently, I was the only patient left in the recovery room. I had the place to myself, me and a bunch of spectacular nurses. I liked my drug induced sleep. I would wake up for a few seconds and drift right off again. Those nice nurses kept trying to wake me up and keep me awake but I was having none of it! After an hour or so of this, the nurse became concerned because I was not waking up and staying awake. Also, I have this tendency to breathe very lightly and my oxygen levels were of concern to them. I heard them call the Doctor but I guess he was not too worried as they just continued to monitor me. Finally I came around enough around midnight and they moved me upstairs to a room. Midnight!!!!! That was one very long day!

I did pretty good over the next two days. They do get you up right away and get you moving. There was not tons of pain, it was uncomfortable but not unbearable. One thing that was pretty odd…(do not read if you are squeamish…) When they take your kidney out, they go in from the front, take all your intestines and stuff out (still attached) and move them aside to reach the kidney. When they are done, they take all your stuff and mash it back into where it came from. But there is a new space where the kidney used to be. So, the first time you get up to move, you feel all your stuff kinda sloshing around inside as it settles into the new space. Yikes!!!!!! So consider this a public service notice/warning if you ever find yourself having a kidney removed. You’re welcome. 🙂

On Friday, I went home to continue the recovery and get well. I would be out of work for at least the rest of April. It was Spring and I wanted to be up and out and getting better. I had decisions to make about the gastric bypass surgery. I was being pressured by well-meaning members of the program I had been in. I just could not commit to anything other than getting past this cancer thing. I needed time…

 

A detour along the road

I didn’t feel so lucky when the diagnosis was cancer.

Less than 24 hours after being told I had a cancerous tumor in my kidney, I was scheduled for gastric bypass surgery. Well, that wasn’t happening now. All the hard work I had put in for 9 months was out the window. I had planned this surgery so that by the Summer, I would be well on my way to a new, healthy, slimmer me. I had plans. Big plans.

I actually like to exercise. I especially like walking. But it has to be outdoors, preferably some place scenic, woodsy, near water, a nature path. I had found several places that I walked that really fit these requirements. I had a book of nature paths that ran in Lincoln, Lexington, Concord. When I walked, I often took my camera. I like taking nature pictures. I was pretty good at it, too. Hiking and photography seem to go together like birds of a feather!

You need a goal. And I had one. My goal was to go hiking in the White Mountains and stay in some of the AMC huts that are located in those mountains. I wasn’t planning on a big hike, just something manageable to start with. The Fall was my plan. Not hot, not buggy and God knows the most beautiful time of the year to be in the mountains. This had me written all over it. And in the blink of a routine CT scan, it was all gone. And it still is…but that’s part of the story that comes much later.

So when I got the big C diagnosis, I had to first tell my family. This would be hard. At this same time, my brother in law was experiencing advancing prostate cancer. He had already beaten throat cancer and then BAM, he was told he had prostate cancer. This too was manageable and had been under control for about four and a half years. But now things were changing and his cancer was getting worse. How do I call my sister and tell her that I have cancer too? Well, there is only one way and that is, pick up the phone, make the call and just say what it is. No beating around the bush. Cancer is cancer and I have it.

Remember when I said I was lucky? Well, here is where that was really true. The kind of cancer I had would only require the removal of my kidney. I would not need chemo or radiation…at all…ever. How does that happen? So on the surface, this was GREAT news. But it ultimately took a huge toll on me. More on that later…

How do I tell my sister and her husband the “good” news about my cancer when he was starting to fail. His cancer was advancing and all I had to do was have a little surgery and I’d be fine. Such mixed emotions. But I made the call anyway, told them everything I knew and assured them I would be fine. I could handle this…by myself. Or so I thought.

Grind to Glory

So here I am deciding finally to put things down in writing. Will anyone read this? Does anyone really want to know what I think or how I feel? Hard to say.

Where does my Grind to Glory story begin?

In the early Summer of 2012, I decided to look into the possibility of gastric bypass surgery. I knew very little about it and did not want to make any rash decisions. It seems that I am one who never makes a rash decision but at that time, I did not know that about myself.  So I went to some informational meetings and decided that I would attend the program with the intent of learning more while working toward the potential of surgery. The Doctor I was assigned to was excellent. I also had to meet with a nutritionist every month and start learning how to eat better. Attending support group meetings was mandatory. And I went to every one. I had some bumps along the early road with directly conflicting information from two nutritionists in the program. I was confused. I was frustrated. I was angry. But I stuck with it. I lost some weight but not enough. Is it ever enough? I exercised. I actually like exercise. I especially like walking. And I LOVE being in a pool doing aerobic exercise. I kept plugging away through the Fall and then at the end of the year, I made the decision to have the surgery. It was a big decision but one that I made only after extensive research and some really hard work. I was committed.

But then I began to tell family and friends. Some were supportive, some were flat out opposed to this. Others said they were supportive but really weren’t. I would not know this until the Spring of 2013 when it all went to hell in a hand basket. The surgery was scheduled for Tuesday March 5, 2013. In the week prior to the surgery, I had to undergo several pre-surgery tests. One of those tests was an abdominal CT scan. There was a mix-up with scheduling this test and I ended up going to the hospital on the day before the surgery for this “routine” test. It was FAR from routine.

I had this routine CT scan less than 24 hours prior to the surgery. I went in, had the test and went right back to work. I had loose ends to tie up at work before I would be gone for a month or so. I was not back in my office for more than an hour when the Doctor’s office called and said there was a problem. A big problem. The secretary told me they found a “mass” on my kidney. She never said what that meant and I did not know. She went on to tell me that the office had made an appointment for me for that afternoon to see a urologist to discuss this. My surgery was in jeopardy.

I was in a fog. What the hell was a “mass”? I wasn’t sick, how could anything be wrong? I went to the urologist and he sat there, nice and matter of fact and told me I had a tumor in my kidney, it was the size of a golfball, it was smack dab in the center of the kidney, it was CANCER and I would have to have my kidney removed. The whole thing. So I became very matter of fact and asked how he knew it was cancer without tests and biopsies and he told me that these kinds of tumors can not be biopsied. They are called “encapsulated” tumors and that piercing the encapsulation in any way would cause the cancer to spread. Kidney cancer is 100% fatal. Every time. Ok then. This was the bad news.

Was there good news? Yes. Fortunately we are born with two kidneys and we really only need one. Nice to have a spare organ when you need one. This cancer is also the type that once you remove the organ, you remove all of the cancer and there is no need for chemo or radiation. What????? Who has cancer and doesn’t need treatment? But it was true. As long as there was no breech of the tumor, there was no need for anything but the surgery. It would be like having a tooth pulled. The Doc told me how lucky I was. And although I heard him, I was not in any kind of place to believe him. I was devastated. Everything I had worked toward for 9 months was ripped away from me and now I had cancer. And I was losing a kidney. Not feeling so lucky.