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