Month: September 2021

Welcome back for part two of “Exit Stage Left.” My side of this story is tough to tell. It will be tough to read. But I think it’s important, both for me to write and for you to read. This is a big fat trigger warning for those of you whose lives have been affected by suicide. My heart goes out to you all.

I originally had this piece titled Exit Stage Left, Part 2 but I decided to change it. I’m not part 2. I’m still here, as I’ve said before, a little bung up but still here.

I remember the first time that I heard the song from Hedwig and the Angry Inch, The Origin of Love. I’m not sure how many of you are familiar with it (if you’re not, you should really find a video) but it’s basically about the original beings that existed in ancient times. One day Zeus became angered with these earthly beings. At first planning to strike them dead with his lightning bolts. Then he realizes that a worse fate is to split the beings in half with a bolt of lightning forcing the two halves to live without the other. When these two halves finally find each other, their missing other half, that’s love. This was long before we knew about Mark’s brain tumor but also a long time after we had fallen so head over heels in love. I remember listening to this song and thinking “That’s it. That is really it. That’s what it feels like, like we belonged to each other all along.”

Many years ago, before we were married I dragged him on a trip to Sedona, Arizona. I’ve had a running bucket list of places to travel to. Some of them he wasn’t overly thrilled about but most of these turned into a pleasant surprise for him. Sedona was one of those places. If you’ve never had the pleasure, it’s an unbelievably gorgeous place with phenomenal red rock mountains to hike. Many people believe there are energy vortexes in these mountains with healing properties for you body, mind, and soul. So of course there are also the whole fringe culture; mediums, tarot card readers, vortex tours, aura readings, and the list goes on. Much to my surprise, Mark embraced the whole culture there and it was a blast. Who would’ve thought that we’d be hiking guided by an energy vortex map and then meditating in these spots. Or that he would go see a psychic with me. That was the first time that someone told us we had been together in past lives but it wasn’t the last.

Over the years we were told by multiple psychics, mediums, and one very eccentric clergy member that we were twin flames, souls that belong to each other and will find each other over and over again. Who knows, right? But it is odd that we got the same story multiple times over the course of 20 years by people that had obviously never met either of us. No matter what you believe spiritually, it’s just a nice thought, isn’t it? That you have another soul out there that you are bound to and you’ll always find each other.

I remember not long after his first surgery, within days of getting home from Brigham, everything was still very raw. Very raw. He just broke down sobbing and asked “What are you going to do without me?” That was the thing really. The thing that made him the most sad out of all of it. Everything else about it, I think, made him angry and frustrated. Everything he had worked so hard for; his career, our project in Grenada, stolen from him by this monster growing in his head. But his sadness, that was for me and the people we love. For all of us in the after. So of course we both sat there clinging to one another, sobbing. And then he just whispered quietly through the sobbing and said “I promise to find you sooner next time, so that we have more time.”

I guess my piece of this story really started without me even being aware of it. I went for a long overdue physical the spring after his first surgery, May maybe. The first surgery was behind us, the ultra marathon of back and forth to Brigham and Dana Farber for radiation had slowed to every six week appointments with the exception of occupational and physical therapies. This was a new nurse practitioner to me, very sweet lady. She suggested that I try an antidepressant. I’ll be honest, I was skeptical. I mean, I was going through some heavy shit so of course I’m sad, right? But I filled the prescription and took it home thinking, I’ll think about it. Who knows? Maybe I would decide to take it. But the days passed without me giving it too much thought.

The next month rolled around and I was picking up prescriptions for Mark, God knows there was always something to pick up at the pharmacy for him. The pharmacist said “We have one for you as well. Would you like it?” Sure! So I picked up month number two of the antidepressant which I promptly put in the medicine cabinet right next to the untouched bottle that I had picked up the month before. And that became the routine. I would pick up the antidepressant every month and deposit it into the medicine cabinet along with all the rest of the untouched pills. At some point I combined the bottles, still without ever swallowing a single one.

There was a period of calm in the midst of all the bullshit. It was that spring into summer of 2019, right around the time of that physical exam that I had. Spring and then some of that summer, things felt a little better. I would almost say hopeful but not quite. Mark’s therapies were going well. He had it in his head that he was going to go back to work in some capacity. We took a trip to our favorite resort in Mexico with all of the kids and renewed our vows with a Mayan shaman. We got in a trip to Grenada. He was far enough out from any seizures that he was driving again. He even talked me into going back to work for a short stint at Brigham as a traveler. That all sounds hopeful, right? What say you, Universe?

And of course the universe’s answer was yet another punch to the face. I think I had one week left at Brigham (out of only 8, sorry Brigham fam) when I got the text from him. We were staying at our Massachusetts apartment on the days I would work and then come back to the lake on the other days. Once again I get a text that says “I had a seizure, please call.” I honestly think if you knew my husband that the next part of the story won’t surprise you in the slightest. He was on the commuter rail headed into the city when I called him. He had called his neuro oncologist who wanted another MRI right away so he hops on the commuter rail by himself and then asks me to meet him at North station to help him the rest of the way. It wasn’t exactly a hop, I guess. He actually said that he didn’t think it was safe to drive to the commuter rail so he had walked the half mile to the station. I mean, honestly.

So I’ll just quickly gloss over the next couple of months. There’s a lot to talk about there and the details are not so much the point of this story, my story. Not a huge surprise after the seizures had started again but the tumor was in fact growing back. We talked him into a second surgery, a “heroic act of compassion” was how the neurosurgeon described it. Things got bleak again very quickly. More bleak than ever, really. The seizures were back in full force between that day and when we were able to get scheduled for the next surgery. It was less than a couple of weeks but every day was torture. And then the second surgery took so much out of him, both physically and mentally. And me too. I mean, we now both knew for sure that we were not unicorns, the magical beasts that get 10 years with a glio.

Everything was harder this time. Getting him around, back and forth to Boston from Maine since we had given up our Massachusetts apartment the month before. Getting him in and out of the hospital. Every damn thing was harder.

About a month after the second surgery they decided to wean his steroids which resulted in the mother of all seizures for him. It’s odd to describe it that way because you would’ve had to look him dead in the face to know he was even having a seizure. We had taken our dog Baxter for a walk, barely even left the driveway when he grabbed me by the arm and pointed toward his face. He had partial seizures so not whole body. His before the first surgery were always hand and arm. Now apparently we got facial seizures. This one was lips, labial fold, nose, and area around his eye. It’s fucking terrifying watching someone’s face convulse especially if you know what it really means. We went for an MRI to make sure it wasn’t a stroke, which it was not. Over the next 12 hour the after effects of the seizure kind of settled in leaving him unable to speak and with right sided weakness and a very pronounced facial droop.

It was devastating. So we restarted the steroids which I never allowed to be weaned again. Most of the after effects resolved in a week or so. In addition to restarting the steroids they also started an additional seizure medication. That’s what they did every time he had a seizure all along, either up his dose or add a new one in. No one, including us was ever brave enough to discontinue a seizure drug even though we all questioned if they ever really helped at all. I think this brought the total seizure meds alone to 5 different drugs.

After this last one was added his personality started to change. I mean, the man had been diagnosed with terminal cancer, had 2 scoops of his brain taken out, had countless seizures over the previous 9 months, was on an assload of anti seizure meds. Of course his personality had changed. But now he was mean. I mean, really mean. Cruel even, cruel to me.

It was awful. I’m not looking for sympathy here. I can’t even bring myself to share with you the kind of things he said to me. I was convinced that it was this new drug and tried talking to his providers. There were so many and honestly some times it was difficult to get any one take responsibility for the seizure meds. They sent us to a seizure specialist who, even after I explained how I thought it was this new drug, basically said this is how he is now and suggested we start hospice. That was the one and only time we saw her.

I was becoming more and more despondent. And he continued to be cruel. Finally one day I connected with a fellow in the seizure clinic. He was amazing and I will be forever grateful to him. He heard my concerns and suggested that we switch out that last seizure med for a different one. Within a week I had my husband back. Still the one with two scoops taken out of his brain, but the cruelty was gone.

The point of all that misery talk is to try to paint the picture for you, the place that I was in. My husband was dying, I was exhausted and not sleeping even when I had the chance, and now I had been dealing with verbal abuse. I’m not going to try to sugar coat it. There were drives home from Boston during this time when I would be listening to whatever horrible thing he had fixated on that day and my gaze would linger on the back of a dump truck that was stopped in traffic up ahead on the highway or the front of a tractor trailer truck coming at us in the other direction. I mean, we had always honestly said that we really needed to die in a fiery crash together, that was the only reasonable end to us.

Things did get “better” after the seizure meds were switched out. By better I mean he was my loving appreciative husband again. But I had the seed planted in my brain now. And the seed grew from gazing at the truck just a little too long to actually coming up with a plan. I’m a planner. I like having a good solid plan in place for everything. So that’s what I did. Not really with any timeline in mind, just for whenever I decided there was nothing left of me.

Let me be very clear about one thing. The plan would’ve never happened before he passed. Never. First off, even if he had stayed that mean man who decided he hated me, he was always my Mister and I never would’ve left him. The plan was always for after that nightmare was over.

So I started to research not only the antidepressant that I now had several months supply of squirreled away in the medicine cabinet, but all of the meds we had in the house. And let me tell you, we had a lot. So I researched them all; doses, overdoses, everything about them. That’s when I started to collect my “to go bag” as I have come to refer to it. It was literally a container of drugs that I had on the ready for when I was done with all of this. It was more than enough that there was no worry about it not working.

After Mark passed I was a mess, not just because I was suddenly without him but also because of the physical and mental ridiculousness that I had been through over the 20 previous months. I was lost, sick, exhausted, depressed, all of the things. I felt comforted knowing that my to go bag was there. Strange maybe, but I was. I knew I had an escape hatch if I needed it.

But as the days passed I started to see past this fog of despair and really started to look at the people around me, the ones that I had leaned on when I was at my lowest point. How could I pass that pain on to them, the people that love me? They were already grieving Mister so how could I do that to them? That’s the thing with suicide. The pain doesn’t go away, it just gets passed on to someone else. They had been through enough already. No matter where my head was at, they didn’t deserve more pain.

I’m now just over a year out from his death. The to go bag has been disposed of properly and I’m okay with that. I no longer need the comfort of knowing it’s there. A ways back I had a conversation with both of my kids to tell them that they didn’t need to worry about me hurting myself. I honestly had been so consumed by my own grief that it didn’t even occur to me that they might be worried about that, the very thing that I had so carefully planned. I told them that they were stuck with this fucked up version of their mother for the foreseeable future, universe willing.

I still have days that I let myself wallow a little; miss him and my old life. But I don’t live there. I live here now, in the after.

Hi guys. Here we are again. I need to tell you all up front the this is a tough one. Heavy, heavy topics ahead. Proceed with caution. All that stuff.

The title was a no brainer for me. I chose it not to make light of the topics ahead but rather to honor Mark’s nostalgic side. I know that he would laugh at the title and think it’s just perfect. Younger readers may not recognize it as the catch phrase of the popular 60’s and 70’s Hanna Barbera cartoon character, Sagglepuss but I know Mister would’ve. Another side of him that only a select and very lucky few got to see, his nostalgic side. He would spend hours on the internet searching for these old cartoons and tv shows that he watched as a kid. And he would laugh that infectious belly laugh of his, the one that no one that was around him was immune to. It was impossible not to laugh along too.

I’m going to start with the Mister side of this story. But it’s really two stories happening simultaneously. My part started a little earlier on but we’ll come back to me in a bit. I’ve talked before about the punches. You know; the punches in the gut, the punches in the face, the punches in the form of a shocking bit of information that you feel in the core of your being. This time was a little different. It was a punch in the gut to me from Mister himself.

It was the spring of 2020, just when literally the entire world’s lives were getting blown up. We had had our last appointment in Boston. The only one we had to go through after the onset of the pandemic. That day is a whole other story in itself. That was the appointment that they told us they didn’t have anything else to offer us. We were kicked out of trial number 2. The tumor was growing back. Here’s your hat, what’s your hurry. All that.

Mark was never a drinker. It was usually more about the time and place, the people we were with. He would have a beer here and there, his favorites were with friends after a hash in Grenada. Occasionally a gin and tonic if he was feeling fancy. He had a great time drinking all of the French wine in Paris. He liked scotch but only really good scotch. He could never bring himself to go buy a bottle of Johnnie Walker Blue even though it was his favorite. So I would buy it for him as a gift occasionally. It would literally take him a year to drink it. But on that day, the day they told him that he didn’t have to bother to stick around for his chemo infusion, he asked me to stop at the New Hampshire liquor store on the drive home so that we could buy a bottle. Not only did we buy a bottle, we also bought a nip bottle so he could drink it in the car. I know what you’re thinking, who knew that Johnnie Walker Blue came in a nip size? Well I’m here to tell you that it does, in a fancy little box with a $20 price tag but it does. In true Mark fashion, he only drank half of it. I think it was more the idea of it really. The other half is still in the fancy little box in the kitchen.

We got set up with some wonderful providers here in Maine, a great neuro oncologist and her PA. So we went for our first appointment in May 2020, COVID is still brand new so there’s the whole anxiety that came along with that. At the beginning of the pandemic I was constantly reminded of the time that someone asked me if there were glio patients that didn’t die from the glio, like lived on to die from something else. My response was that you would have to have a serious turn of bad luck to have a glio and die from something else. That was coming back to haunt me once the pandemic hit.

Anyway, the appointment. We had the whole meet and greet, vitals were taken, condolences were given for the stage we were at, discussions about our few options were had, and then there it was. He asked how long. With all the vagueness that we had encountered up until now when we ever asked about time, she answered us as best as she could. She said “Would it be 6 weeks? Probably not. Would it be 6 months? Absolutely not.” (Just FYI, it was 3 months.) His next question was about the death with dignity act that we have here in Maine. He first asked it as “what can we do when we’re just done?” So she asked him to rephrase because, as it turns out, physician’s can not offer information about the death with dignity act without being asked. That’s how the law was written and I guess I get it. It’s not physician assisted suicide as many people like to refer to it. It’s death with dignity. I think the important take away message here is that it needs to be talked about more, advertised if you will. If it’s not talked about out in the open for all to hear, then how will people even know that it is an option?

I guess I was just a little bit blindsided by the question. Usually with things of this importance, we would’ve talked about it before and I would’ve been prepared for it. In retrospect I suppose we had. I mean, he had told me that he didn’t want to be bedridden, in a diaper, not knowing who any of us were. But I was also still in that purgatory place, teetering between fighting the good fight and also being fully aware that I was watching my husband slowly disappear right before my eyes. So I was taken a little off guard.

We had a discussion with her about the steps that we would need to go through if this was something that he really wanted to pursue. It’s not an easy decision to make but I’ll tell you that it’s an even more difficult process. There are many steps to go through, forcing you to think and talk about it in great detail. The first thing that she told us to do was to go home and talk to our family about it, see how they felt. So here we are back at the hardest part. We’ve already had to have all of these horrible conversations with our adult kids and now we have to do this? As difficult as these conversations were, our kids all seemed to understand and support us. We talked to a few other friends and family members about it. I’ll be honest, probably only ones that we were sure would be supportive of it. It’s the most difficult decision that anyone would ever be faced with and criticism is the last thing that is needed.

I’ve seen comments from the faceless cowards on news articles saying things like “how can these families not value that person’s life just because they are sick?” I feel like these can only come from people who are not educated about the process and have no understanding of the position that these patients and families are in. First off, the process is not easy, There is literally no way for someone to fall through the cracks. You have to proactively ask your physician, you must be a legal adult, you must be capable of administering the medication to yourself, here’s the big one- you have to have less than 6 months left of your life. That last one has to be verified by two physicians. That was what led us to our first meeting with palliative care.

We did do a couple Avastin infusions in the meantime, while we were getting this ball rolling. It didn’t help and really was a little ridiculous. I mean, he couldn’t even get through an MRI at this point because he would get so agitated if I was out of his sight for too long. I was his constant and it had to be terrifying to not know where I was or what was happening. So, really why were we still giving him infusions?

We had our first meeting with the palliative care physician via Zoom. That was interesting but actually turned out to work very well for us given Mark’s very limited mobility at that point and of course the pandemic. To say that this man was one of the kindest human beings that I’ve ever met would be a grand understatement. We had the whole conversation over again with him. This was now our second verbal consent so we could now proceed to the next part, counseling and then an in person meeting to sign consent with a witness.

So just to review, you have to meet all the criteria, have 2 physicians agree on your prognosis, have a counseling session, sign written consent with a witness, and then the prescription can be sent to the pharmacy. This whole process takes about 6 weeks to complete. Ironically enough, when we had our first conversation with the neuro oncologist she told us that the weakest link with this is that people often waited too long to get the ball rolling.

Just to speak back to my initial shock at him raising the questions about all of this, I just didn’t know it was coming that day, right then. We had talked before at great length about what he did and did not want to happen toward the end. I knew he wanted some control over things. Who wouldn’t after everything he had been though over the year and a half before? Who wouldn’t after slowly losing control over pieces of their own body and mind?

The prescription gets sent to one, and only one, pharmacy in the state. They are the only ones allowed to mix the compounds of these drugs. The palliative care doc recommended that we leave the script at the pharmacy and only call when we felt that it was time since it would only take a day to get it ready. That way we could come up with a plan. When? With who? That kind of thing. A very kind pharmacist did call and speak with me just to let me know it was there and all I had to do was call, they were available to help with anything that we needed.

Great, we’ve made this huge decision and gone through this emotionally exhausting process. and then the universe had one more subtle fuck you for us. Mark’s speech began to deteriorate. And it happened pretty rapidly. It’s funny because I had never really appreciated how quickly it happened until maybe a week ago. I was scrolling through my endless cache of snapchat videos looking for something else entirely when I came across some videos I had taken of him. I took them mostly to keep the kids updated about what was happening and also for the doctors. Some days I felt like I was the only one that could see what was happening and the rest of the world was looking at me like I had given up or was crazy. There’s a distinct two week period of these videos where you can actually watch him losing his speech. It’s gut wrenching to look back at.

So there we were. We made the hard decision. Did all of the things. Got our ducks in a row. And here’s my husband, concentrating with all of his might, so carefully thinking about the words he wants to say, opens his mouth and what comes out? Finna Binna. Yup, not a typo. I’m sure some of you that were here at the end heard it. That’s how weird the brain is, and how cruel glios are. It knocks out your speech center but leaves you with one last nonsensical line, finna binna. This was a cruel period. He could understand what you said to him and he could think his own thoughts but all that would come out was finna binna.

His ability to write was gone months before. He had lost function of his dominant hand and arm with the last surgery. Gradually his recognition of letters and numbers went along with the physical piece. No more writing or reading. Something to talk about more at another time but just know for now that when his speech went so did the ability to ask for the prescription and our “death with dignity.”

There were a couple of times that I tried to broach the subject with him, times when I knew how desperately unhappy and frustrated he was. But it never felt right, never felt like that was what he was asking for. And I can sit here and tell you that he understood what was going on and that he knew everything we were saying to him but, honestly, how could I be sure? How could I be sure that he hadn’t changed his mind? It just wasn’t my call to make.

Today is not the day to go into the rest of the end but I can tell you it was exactly the “exit stage left” that Mister did not want. I was able to keep him at home at least, at the lake just like he wanted but the rest of it was a bunch of shit. Unable to talk, unable to hold himself upright, diapers, the whole shebang. I can’t second guess any decisions that we or I made along the way. There’s no space for that now. All I can do is continue to talk about the death with dignity law here in Maine and encourage discussion about it. It’s not giving up. It’s not hurrying things along. It’s giving some dignity and control back to people who have been stripped of these things by no fault of their own. There is no better way to love and honor someone at the end of their life than by supporting this decision.

I’ve decided to split the stories up. It’s too much for now, too much for me to write, too many feels. My part of “Exit Stage Left” will be next. Thanks for reading