annieintheafter.com

I started going to therapy after my annual physical which was last summer, July maybe. I saw a new PA with my primary care practice. The NP that I had been seeing for the past couple of years retired a few months prior. So the good news is that he was a nice kid, smart. He talked me into not only giving an SSRI a try but also into considering seeing their therapist in the office. The bad news, I didn’t think he was going to stick around with the practice.

We had a good chat about some of the things going on with me since the whole fiasco. Again, things I thought were normal grieving were suggested to possibly be something a little more. This is where I’d insert a crying laughing emoji if we were texting. Which apparently isn’t cool anymore but be prepared to always and forever get them from me if we text. Because I like them, which will become a theme with me over the next few stories. Anyway, he talked me into trying an SSRI. So guys, here’s the thing with this prescription that’s unlike most of the others I’ve received in my adult life….. Not only did I fill this script, I also actually started to take the pills. As prescribed even.

So fun fact, a decent percentage of people with PTSD will have a paradoxical reaction to this particular SSRI when they first start to take it. Basically it will have the exact opposite effect that you’re going for, severe acceleration of symptoms. It rarely last more than a week if the patient can stand to put up with the symptoms. That’s what I read online after no sleep and anxiety at the panic attack level for 48 hours straight anyway. So I did. I stuck it out. I paced around my house for hours at a time. I rocked, that’s a good one to get nervous energy out. I thought “God damn it, I finally agreed to try this. To try to move forward. I’m not turning back now.” In retrospect, I could go either way with if I did the right thing. I mean with this drug anyway. It was a hellish 5 or 6 days but I did it. Could I have switched to another drug that wouldn’t have done that, yes. Would I have switched or just given up on the idea? That’s the real question with noncompliant patients such as myself. And I do think that that drug is helping. So for that I suppose I am glad that I stuck it out.

Has it taken away my depression and anxiety? No. Has it helped me sleep or stopped the night terrors? No again. Has it helped to lift the fog just a little bit? Yes. Has it helped me to get through entire days without crying? Yes again.

When I went back for my follow up my appointment it was switched to a primary care MD who is lovely and kept me with her based on the complexity of things going on with me. I am truly grateful for that. So we decided to keep me on this SSRI AND she talked me into making an appointment with the counselor in the office. Again, grateful to have that service accessible to me as I know it’s not to so many.

So I start therapy. Again, lovely therapist in the office. Very kind. Gave me things to work on or think about between sessions which I very much liked. But here’s the thing with therapy, it’s really patient directed. So I went in thinking that I wanted to talk about everything that happened. Especially the stuff the last few months. When things got really bad. When his physical health was declining as rapidly as his cognitive function. When the pandemic was in full swing so I literally had to risk assess every person that came in the house so I was alone with him a good percentage of the time. When I finally had to move our bed downstairs. When he needed 24/7 care and I was a one woman show. When I shoved all the terrible things down as deep as I could because I didn’t have the time or the energy to deal with them. It’s intentional at the time but then they end up like that one poor yogurt that gets pushed to the back of the top shelve of the fridge. You know the one that you have to scooch down and really look for to find it again. And then usually by the time you do its a month past expiration and the top is all puffed up. Or that one poor jalapeño that you just keep piling fresh produce on top of because you forgot he was there. It’s not until trash day that the poor little guy is revealed, all shriveled and with a furry coat. The point being, if you don’t go in there after them (and sometimes you have to really look around to find them) they’re going to fester and stink. Rot you from the inside out.

So I start going to therapy and talk about how things were at the time, what I want to do in the future, how I’m dealing emotionally day to day, how I’m sleeping, how I need to take better care of myself, all of my feeling of self loathing and lack of self worth ( a common PTSD symptom by the way). So basically I went in there and talked about everything BUT what happened. I mean obviously it was all things that were important. All things that I know needed to be talked about. But we never went after the stinking yogurt. No fault of hers. This was all self driven and we did do some great work.

Some of the most important work was me learning how to be open to the universe as far as what it’s going to bring into my life. How to go with the flow. Be open to new things. Put myself out there and just see what happens. And let me tell you guys what, I was all in. I was going to come up with a plan of how that was going to happen. I could spend maybe one day at most without working on my plan, which is most likely an exaggeration honestly. It was probably more like a few hours at a time. Then I couldn’t stand it anymore. I’m not sure if it’s an attention deficit thing, a control issue, a general lack of patience, too much time on my hands, or a combination of all four but god damn it, I was making the fucking universe come to me one way or the other.

Turns out that’s not actually how it works.

The first shift was subtle. I didn’t recognize it at the time. It took a couple of weeks for me to be like “Okay, Universe. I see you. I see what you did there.” I had been going to therapy for a few months. Meds got shifted around. I was physically feeling a little better. Sleeping some. Trying to take better care of myself. Eating, you know the basics but things I needed to work on. I was getting ready for a trip to Atlanta to spend a long weekend with the absolute best friend I could ever ask for AND see the B52’s at the Fox Theater. We try to do a trip or something for our mutual November birthdays because, well because we want to. Funny side story, she bought the tickets when we were in Grenada, on an island tour, downtown at the House of Chocolate, holding her phone up over her head to stay connected to the spotty wifi. Now that’s a crying laughing emoji worthy sentence right there. So I’m trying to pack for the trip, standing there staring into the abyss of one of my closets. Yes, I said one of my closets to emphasize what I’m about to say. I didn’t have anything to wear. I’m literally staring in a packed closet that only contains my folded clothes. Nothing on hangers, I have another previously packed closet for those. No delicates, I have drawers for those. So I obviously HAD clothes to wear. I just didn’t want to wear any of them.

I know I’ve talked about my yoyo weight through all of this but at this point I had settled in at a weight which stayed stable for a few months. Nothing gained and no more lost. So I decided to buy myself some new clothes for the trip. I picked out somethings that I liked. Things that made me happy when I looked at them. Things that made me happy when I wore them.

That weekend was a blast. We had so much fun. The first full day which was my actual birthday we went to the World of Coca Cola and did the whole touristy tour and then to Mary Mac’s Tea Room for some fine southern cuisine. I stupidly wore new boots and got blisters so bad that I asked a random stranger who looked like a mom for bandaids and literally limped back to the hotel only to find out that the concert that was supposed to be starting in 4 hours was postponed until January due to Kate having strep. Yup, you read that whole thing correctly. We were staying at a hotel directly across the street from the venue so we got ready to go out, me wearing my finest running shoes and several layers of blister dressing with my new clothes and headed down to the bar. Turns out almost the entire hotel was there for the concert so the bar was filled with self proclaimed concert refugees. We met a lot of nice people from all over who had also come in for the show, swapping travel stories over drinks. It was fun.

This was the second shift and I felt this one. My first thought when I found out the concert was postponed, I get to come to Atlanta and do this again.

I spent the rest of the weekend with the feeling of a positive shift. We visited the Atlanta History Center and had dinner at a fantastic tapas restaurant that had just opened. They had an amazing female violinist performing. The owner came over to our table and then sent food and shots to our table. The next day we went to an amazing brunch complete with a free pitcher of mimosas and then headed to the High Museum where it was Second Sunday, free admission and performers including dancers and music.

A few adult beverages were consumed and many hours were spent talking. One thing that came up was that my therapist had asked me at my last session if I had thought about dating. So we talked about that. How it was a hard no. I felt like I was still married. And who would I date anyway? When I said that to my therapist she suggested maybe someone that I already knew since it would be easier than someone that had no idea what happened. To which I absolutely lost my shit laughing. I mean, seriously why would anyone who saw what happened to me want to date me. And besides, I had a great marriage to a man I absolutely adored and I had no interest in settling for less. So I came up with a list of qualities that were absolutely crucial in a potential partner for me. And it was a list. It was a list of someone I was absolutely sure did not exist.

I felt different when I got back from that trip. I felt like I was finding some happiness. I did feel a shift. And when I opened my closet the next time I realized all those clothes that were piled so high on all the shelves, they weren’t mine. I literally felt like I was looking in someone else’s closet. The matchy matchy sweatsuits that I had bought because I could wear them during the day and to sleep in, as in literally sometimes for several days in a row out of necessity. The clothes that were “appropriate” for this occasion or that. But not things that made me happy when I looked at them, when I picked them up, when I wore them.

So that was the first thing that I decided needed to change. Guess what guys? I can wear anything I want now. Whatever makes me happy. Skirts that feel sassy when I twirl around. Gigantic dad jeans that are comfortable enough to sleep in. Things that sparkle. Clothes that serve no purpose other than to make me happy. And I’ve been purging my closets. Yes, all of them! I’m getting rid of all the clothes that belonged to the old me.

This is about the time that I was feeling good. Better anyway. Good shifts from the universe that I recognized and was open to. Sleeping some, eating more, taking better care of myself. This was also about the time that the universe saw me skipping along happily for the first time in years so obviously the only appropriate response was for the mother fucker to stick her leg out to trip me.

Hey guys, I just thought I’d drop by with some updates and to spread a little love for Valentine’s Day. I know, another contrived commercial holiday. But it is a chance to tell people that you love them. We need to grab all of those chances that we get. You know, make it weird. It’s fine. We need more weird and more love. So to all my weirdos, even weirdos that aren’t mine- I love you guys.

Any who, I’m not even sure exactly where to start with all of my nonsense. I guess back in the summer when I finally decided to get some help for my mental health. Coming up on that two year anniversary of Mark’s death was a terrifying time for me. I honestly thought that I was just grieving all that time. Relentless grief that just wouldn’t let up. It was hard to wrap my head around the fact that this was it, this was how I was going to feel for the rest of my life. In retrospect I’m not sure if my goal was to help me figure out how to live the rest of my life with this grief or to actually help me work my way through it. It’s been a crazy few months but I think we’re starting to figure a few things out. Like the fact that I definitely was grieving but it was actually much more complicated than that.

I want to be open about my story, my struggles I suppose, not because I think my story is so unique but because I think struggles with mental health are so common and definitely not talked about enough. People have a hard time reaching out for help for a variety of reasons. It took me 2 years. Again, I thought I was grieving and all associated problems that I was having were just byproducts of my grief. I didn’t even want pharmaceuticals. I wasn’t depressed, my husband died. I didn’t need something to help me sleep, my husband died and I have nightmares. Of course I’m anxious, I’m grieving. You get the idea. I wasn’t having any of it. And honestly I wasn’t even convinced talking to a therapist would help.

We can fast forward to now for a minute just to clear all that bullshit up. It has taken some time to weed through all that but you can rest assured that the take home message from all of this is YES IT DOES HELP! ALL OF IT! TALK TO SOMEONE! TAKE THE DRUGS! WORK ON IT EVEN WHEN IT’S HARD!

Honest to god, I presented as a mental health dumpster fire. I was completely unaware of this. I’m sure that it was not lost on my providers though. I am deeply grateful to have a PCP that I trust and listens to me. I’m grateful for the gentle nudging to speak to a therapist finally. I’m grateful that a therapist was available to me. I know that there are a great many people without access to these things now more than ever.

So let’s start with things that I thought were normal byproducts of grief.

Insomnia. I’ve never been a great sleeper. I’ve suffered with insomnia of some degree my entire adult life. This was and again is some next level shit for me though. Most nights I’m up wandering around the house until close to sunrise. Flitten’ around like a fart in a mitten as my Dad used to say. That’s an old Maine expression that just means wandering around not accomplishing very much. Who knows where it came from but it seems fitting for my nights. Somewhere in the 2 to 4 hours of sleep range is a pretty good night for me now. That’s with drugs.

“Nightmares.” That one is in quotations because as it turns out what I was calling nightmares or bad dreams are actually night terrors. Who knew that lack of recall, waking up sitting bolt upright crying hysterically, tachycardic, sweating, and in full blown panic attack makes it a night terror? Well, the answer is mental health professionals, that’s who.

Eating disorders. I just thought it was hard to figure out how to shop and cook for one person. I didn’t even notice that I no longer felt the physical feeling of hunger. I was routinely going 24, sometimes 48 hours without eating. I thought I was just forgetting. I routinely wonder why I’m not feeling so great and then I have to figure out when the last time I ate something. Trust me on this one, my last self would want to throat punch me for even complaining about this. But in all seriousness it’s really not funny or healthy.

Panic attacks. I mean, my anxiety was so bad constantly that an occasional panic attack out of the blue for no reason at all really didn’t seem that weird.

Disassociation. Not gonna lie, does come in handy sometimes. Also not sure it’s a normal response to any kind of “feels.”

And then there are still the “bad days.” There aren’t as many but they still happened. Days I tell myself I’m just letting myself have a bad day. Of course I’m still going to have days that I can’t get out of bed, right? Days I’m not able to talk to anyone or they would know and feel bad for me. Days of laying in bed crying. Who knew that wasn’t normal grief after two years? You guessed it! Mental health professionals, that’s who.

I thought for a while and I think some other people did as well that I was self isolating. I really wasn’t. It was more that I only had so much emotional energy to give so I had to be very selective about where I spent it. That was self protective and necessary at the time. My almost entirely absent emotional energy was not normal though. In hindsight I’m pretty sure it was intentional. I controlled emotions that I was exposed to so that I could avoid feelings whenever possible. Not just actual people either. Books, movies, tv shows, every possible interaction with the outside world. I needed middle of the road. Not too happy. Not too sad. No love stories. Absolutely no sad animal stuff. The list went on but you get the point. I actually settled in to true crime and horror genres. No surprises. You know what to expect. An odd choice maybe but I stand behind it. It worked for me at the time.

This is all still unfolding but as it turns out all of these things are symptoms of complex post traumatic stress disorder or C-PTSD. It’s like regular PTSD but with a bunch of bonus prizes. I’m not making fun of it, guys. Trust me. It’s really not funny when you’re living it. You can google it if you want to read more about it. It’s a relatively new diagnosis as far as differentiating from PTSD. It’s mostly reserved for people who have been in combat, abusive relationships, that type of thing. Repetitive trauma over an extended period of time combined with other external stressors such as severe sleep deprivation, isolation, and lack of humanities such as personal hygiene rewires the brain. It changes the way you think, how you see other people, how you think other people see you, it makes you panic when you feel happy, it turns off hunger receptors. Basically it does some fucked up shit to your head.

I’ll get the full story out in pieces. It’s too complicated for one post. And of course there are layers to this story. I’m in the process of finding my next therapist for the next part of my treatment plan. I’ve had some personal shifts. Becoming more self aware. Starting to recognize my own bullshit like my control issues. Most importantly, honoring where I am in this whole fucked up story line. Guys, I’m fucked up and that’s okay. I finally feel okay. Definitely fucked up but okay.

Knowing what we are dealing with now is huge. It’s a huge step in the right direction. We have more of a plan in place to deal with this head on. Progress is not linear though. That is definitely making itself clear. Some days I feel like things are getting worse instead of better. Most days I know that’s not true. I know I have a lot of work to do. Some of it is going to be truly terrible and I’m terrified of that. But most importantly I’m more afraid of not doing it. I spent 2 years of my life trying to figure out how to live the rest of my life alone, an emotional hermit. Now I have hope that maybe that was the fucked up part of my brain telling me that was the best plan. Maybe we can get my brain re-rewired to not be afraid of happiness. Maybe.

Hi guys! I hope everyone is well and finding some happiness in their lives. I thought I’d give you all an update. Once again, nothing earth shattering. Which in retrospect after the last two or three years for all of us isn’t such a bad state of affairs. I’m trying to adopt a new philosophy of “being” instead of constantly “trying.” The trying was just too much for me. I was constantly stressing myself out. I was constantly feeling like I should be figuring out what’s next, what am I supposed to be doing in the next chapter of my life, how can I put myself out there for more human contact, basically how can I make myself better or healed so to speak?

I’ve had a couple rough patches this spring/summer. Depressive times that have caused me to retreat into myself, unable to interact with the world. Every interaction I have is still, and may always be, my own psyche’s championship game of fuck around and find out. Literally every interaction that I have has potential for an emotional disaster. Totally on me. The subject of a future post that I’ve titled “It’s not you, it”s me.” I painstakingly choose the most neutral entertainment possible. True crime for whatever reason is a solid standby. Something someone says, a look, a song, pretty much anything can crumble me in a nanosecond no matter how great my day is going. And once I’m crumbled, well then it’s going to be a while.

But this is what I wanted to share with you all today; not the sadness I’ve experienced over this part of my journey but the amazing things it has allowed me to discover.

I always assume that you as readers know all about me but just in case you don’t, our nest is set on a lake in the woods at the end of a dirt road in the beautiful state of Maine. It’s literally everything you are picturing right now and more. It’s heavenly.

We always had bird feeders in the winter but rarely filled them through the summer months. Most were positioned out in the yard away from the house. As Mister’s health declined and we were spending more and more time here, well I guess you could say that the bird feeders multiplied. I got a couple that attached to the big picture windows on the front of the house so he could still enjoy watching them even as his mobility declined. Of course we had to keep filling them through the warm months because we love our birds.

It’s just become a thing here now. Filling the feeders and putting out seed and corn for my ground feeders is one of the first “chores” I do in the morning. I usually turn the tea pot on and get to work. It’s one of my grandson’s favorite things to do here. We call it our restaurant and all the creatures are our customers. There are always customers waiting no matter how early we open.

Last winter a red bellied woodpecker started tentatively coming to the feeder. I had to look her up because I wasn’t sure what she was and honestly had never heard of woodpeckers coming to feeders. But sure enough, that’s what she is. She comes almost every day but continues to be skittish, flying off at the first sight of me or any movement at all near the windows. A couple of weeks ago I was sitting in the living room, back to the windows when I hear a loud “twang, twang, twang” like some plucking guitar strings behind me. So I turn around to see a woodpecker on my window screen plucking away at it! As soon as I stood up they got spooked and flew off. I was able to get a close enough look to know it wasn’t our regular customer because this one didn’t have the colorful red head cap. Next day, same thing. It got me wondering if it was adolescent because of the weird behavior coupled with the grey head.

Day 3 my sidekick was here with me. We were out in the yard on the hammock and he said ” Nana, the woodpecker is at the feeder.” I looked up to see our new friend fly from the feeder to a nearby hemlock to……..our regular customer woodpecker waiting and watching over them. Then I knew, our regular customer was teaching her new offspring that our home was a safe place to come feed. I was humbled and touched in such a deep way by this. Upon further research I’ve learned that this is the mom that’s been coming based on the full red cap that covers her head although both parents apparently care for the eggs, chicks, and then help teach the adolescents how to survive on their own. Mother and kid have both been at the feeder daily since although I’m not sure if they’re together or separate now as I’ve only seen them from inside the house and I know there’s a limited time before said child is thrust out in the world on their own. But honesty, it just fills me with such peace to be part of their journey through life.

Next up is our duck customers but we need some other introductions first. I had gotten in the habit of “spilling” extra seed on the ground whenever I fill the window feeders. It’s really for a couple different reasons. First it was for the squirrels and chipmunks. I mean, we all need to eat, right? And these little mofos will do whatever it takes including somehow getting into my window feeders to make sure that happens. Which is quite a feat if you could see how they’re positioned. I’ve also accumulated quite a bevy of mourning doves. That’s a good word isn’t it? Bevy, that’s actually what a group of doves is called and I appreciate you giving me a reason to use it. My bevy, there’s at least 20 of them. They come every day and prefer to ground feed which, now that that I’ve seen them try to perch and eat from a window feeder, I totally get. Doves are sweet, beautiful and make the most soothing coos but one thing that they are not is graceful. They’re not exactly precision flying machines if you get my drift. But I love them equally so on the ground goes the seed for my bevy. They have come to trust this place enough that they sheltered under the overhang of the house on top of my wood pile during several winters storms this last season. Imagine, feeling all warm and fuzzy after finding bird poops all over your wood pile after a nor’easter.

But anyway, what about those ducks? So maybe 6 weeks ago or so I was sitting in my chair over by the front windows, you know, the ones with the bird feeders. I have my chair positioned so that it’s no more than a couple feet from one of the feeders but the birds can’t see me as they’re coming in. It’s funny, some are very skittish and others give not one single fuck if I’m sitting right there. Chickadeees? I’m here to tell you that they are fearless. They will fly within an inch of your face for one tiny seed. Other birds such as the loud, bully blue jays will sit in branches and wait for me to move before coming in. Anyway, this particular day when I stood up I startled two ducks that were at the ground feed area checking out my offerings. So obviously that left me no choice but to go get some dried corn for them to have available the next day. So now we’re a thing. It’s actually three ducks now, two females and one male. No judgement from me, ducks. A family is what you make it. I love watching them waddle their butts up the hill quacking away and later sunning themselves on the tree that came down in the lake after their bellies are full.

Other creatures that I’ve bonded with are dragon flies. I’ve always been kind of middle of the road about them. They’re beautiful at a distance, creepy af up close. I know they eat mosquitoes so, like my spiders, I try to have a mutual respect kind of relationship with them. Like in a “Yay! you’re here. Please don’t touch me” kind of way. But then one morning I was heading back in the house from my morning patrol (we’ll get to that more later) to find two dragonflies stuck in a spider web. They were newly stuck, still alive. One was barely stuck. I pulled that one out and could very easily get the webbing out as it was only stuck on the legs and tail. The other one was barely moving and was much more entrenched in the webbing. So after standing outside with this poor thing an inch from my face with my readers on, I decided I needed tools. I was afraid to put him down while I went inside. They are so light and with his wings trapped I was afraid he would blow away and I’d never find him again. So we came in the house together and retrieved some tweezers and a pair of iris forceps. Back on the porch I once again sat with this tiny creature an inch from my face, readers on, and carefully removed each piece of web from his legs, wings, and body. I put him on the porch railing and after a brief motionless moment I watched him fly off to his dragonfly life.

I’m growing some things too, guys. Don’t get too excited. It’s not like a farm or really even a garden for that matter. Between our brown thumbs and the acidic soil from our pine and hemlock trees we’ve never had any luck growing things. Grass is even tough. Last year I started some seedlings with my little buddy as a Nana Day project and then got some raised garden beds to plant them in. I think we got a few tomatoes and a couple peppers but it was fun anyway. This year I was away for a little over two weeks during seedling season. I knew there wasn’t any point in getting them going as they’d just die while I was gone. So once it was planting season I had a “drag your ass out of the house for your mental health” day and went to my local garden center. I went intending to get flowers and somehow ended up also coming home with several vegetable seedlings. So there you go. Now I’m growing shit. And I think I’m actually going to get some vegetables this year! I had to go get trellises for my cucumber vines that were trying to take over the world. I’m currently obsessed with them. I can’t get over how they’ve flourished since I added the trellises and check on them several times each day. I have several tiny peppers of different varieties, multiple baby zucchini, and a couple dozen green tomatoes. I’ve noticed that since I put my potted sunflowers closer to my vegetables that more bees and a couple different types of butterflies have been pollinated my plants. So obviously now I’ve been studying ways to attract more pollinators for next year. I’m also planning more and different ways to configure my raised beds for next year to maximize my little homestead ( I know. Calm down, right?)

I’ve taken to sauntering around my yard several times a day usually with a cup of tea in hand checking on all my friends; the animals, the plants, the bugs. I haven’t even mentioned the wild blueberries, blackberries, and my grapes. I talk to them all and to Mister too. In my mind I’m like Snow White, flitting about the yard whispering softly to my woodland friends.When in reality any sane person would see a backside of middle aged mismatched tie dye, Bog boot with shorts, def flannel even in the summer, 50/50 bra wearing lunatic talking to herself and possibly needing a mental health check and/or shower. But such is life. This is me for now, in the after.

There’s so much sadness in the world right now. Be kind to one another, check on your friends, and do what you have to do to stay alive.

Hey guys, welcome back. It’s been a bit. Lots of time has passed since we were last here. Time has marched on. The world has continued to turn. People are forging ahead with their lives and I guess I am too in my own way. I’ve continued to write but obviously haven’t posted. It’s weird what this kind of stuff does to our brains. Sometimes I feel like the same thought pings around inside my head for days, sometimes weeks at a time. And as that thought tink, tink, tinks around bouncing off the walls sometimes it collides with other thoughts or feelings or opinions. Usually this is occurring when the rest of the world is sleeping. Maybe it’s a thought I felt pretty secure about. Maybe it’s just something that sprang in to my mind a moment ago. Regardless, that obsessive thought that just won’t shake loose is going to smack square into these other poor unsuspecting thoughts and knock them for a loop.

I still don’t sleep. Honestly I think that with the number of nights of call that we took over so many years between the two of us it’s really no wonder. Non 24 is a reality for many people in medicine. Throw in a little trauma and poof, you’ve got an insomniac for life. Most nights I just can’t turn my brain off, the bing bong ping pong thoughts. Some nights I’ll get up and write the thoughts down which may or may not help with the whole sleep situation.

I guess the intention of the blog was to get some of these stories and thoughts out of there. To make room in my head for my life here in the after, my new life. More for me to write and get it out than for other people to read. But I’d also like to think people are reading. I’d like to think maybe it will help someone else in some small way. The last two I posted, the ones about our exit strategies, those two took a lot out of me. I mean, obviously they did. I don’t think anyone doubted that. Since I posted them though I’ve gone back and reread all of it. Honestly its all just so friggin sad, guys. I did get some feedback from a few people that they felt it was too sad to read. Just to be clear, these were people that I know love me and care about everything we went through. I get it, to sit down and read the sad parts all together are too much. I was there. I know.

The problem comes when I write about now though. I can’t even begin to explain all the feels that come with it when I read it back. Talk about full range of emotions. I mean, no joke guys I wrote a whole thing the other day about going to the movies by myself. What. The. Actual. Fuck. Is. That. Even. About. Seriously.

I’m going to try to sum it up in a nutshell for you and then we’ll circle back and see if this explains my daily conundrum. I had a busy week last week; family stuff, grandkids, car went to the garage, furnace issues. You get the idea. It’s good to be busy. Distracts you from the monsters. Then the weekend came and everything came to a stop. It’s funny that you don’t really notice how quiet the house is by yourself on the regular. But when its been full of noise and goings on, when it comes to a sudden stop, well that’s when the silence is deafening. It’s hard to settle back into. So by Sunday I decided that I should get myself out of the house and that the most benign way to interact with the world as an individual would be taking myself to a movie. I’ve never really had to do things by myself before now. I always had a partner or kids around to be my plus one, a buffer if you will. Now that I find myself here for this solo round though, well I suppose I’d better just start getting more comfortable here.

So we can just fast forward through it. I went. Woo Hoo, right? I went to see The Batman by the way and it was great. Paul Dano was a great villain and R Patz may have found a calling as the flat, emotionless appearing caped crusader. All joking aside, my anxiety was through the roof the whole time. But why? I don’t think it was the actual act of going to a movie alone. I think it’s that in the past whenever I’ve seen someone alone in public, a movie or a restaurant, wherever it may be, it always made me sad to think about why they might be alone. So I think that’s my why. In my mind at least, I think when people look at me alone they think it’s for a sad reason, that they feel bad or sad or whatever. Even if that’s the truth, it’s still hard to swallow.

But then…..wait for it, this is when it gets good. I go from feeling sad that I’m going to a movie alone, to feeling anxious about what people are thinking ( like, do they know I’m sad? and am I making them sad too?), literally to being angry and frustrated with myself. What is the big deal? People would kill for your life. People are going through so much worse than “going to a movie alone.” I wonder where the bad ass that I used to be went. The one that didn’t take any shit from anyone, didn’t care what people thought, thought she could face anything. Is she still in there? Did the glio kill her too? How annoyed is she with this current version of myself? Actually, I know the answer to the last one and it’s very, very annoyed. Which, as I write this makes me think that she is still in there somewhere. She may be lurking behind all the anxiety and insecurities. But I also feel her wanting to pop out and slap this weak-ass anxious bitch right into next week.

I know this is all part of the process, the process of turning into this new version of myself. I know it will take time. Rome wasn’t built in a day and all that. I know you have to go out and make the life you want. We talked about that before. There’s no guarantees that you get to keep it but you still have to build it. I did it once before and man, what a life Mark and I built together. Which leads to more questions. Am I happy with what I was able to carry out of that dumpster fire? Do I want to see what’s salvageable in the rubble? Or do I start building something from scratch?

I guess moving forward I’d like to share more of what’s going on with me now with the understanding that it may not be monumental goings on for most people but for me its the building of an entirely new life as an entirely new person. I’d like to mix in some stories of the things we went through to shed some light on glioblastoma and the wake of despair it leaves behind. I’d also like to share some stories about some of the cool stuff we did, like Grenada for example. There are a few pieces that I’ve written, pieces that I may or may not share. Pieces about thing to not say to someone with cancer or to their loved ones, pieces about my views on religion, ways to help people with terminal cancer, things like that. Maybe I can find a way to blend them in without making anyone feel called out or uncomfortable (see how I’m still constantly thinking about other’s feelings?)

Anyway, once again, thanks for reading. I seriously welcome any feedback. Let me know what you want to hear about, what made you roll your eyes at me, anything really. Let’s do this again really soon.

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

Hey guys, welcome back. Today I’m going to talk a little about humanity. What makes us human? How do these qualities that we possess in ourselves tie us to others? What makes these qualities shine the brightest in ourselves? And how can we help others to foster these traits in themselves? As in, what do we do as human beings that make our souls feel alive and how can we make others feel more human at times when their humanity is being stripped away?

I’ve spent the past week and a half caring for my old man pupper, Baxter. He’s about to turn 13 and for the past 4 or 5 years has been having mysterious “attacks” involving severe abdominal pain. They have always seemed to come out of nowhere, mostly occurring at night, and have resulted in multiple trips to the emergency vet with quite an array of diagnoses. The first was idiopathic nausea. For the nonmedical readers the term idiopathic means “we have no fucking clue.” Seems like a joke, right? It’s actually a pretty common thing to see this word attached to just about any medical term in the book. “This is what you have, we have no idea why.” So nausea medication was prescribed. Did it help? Yes. No. Maybe. Sometimes. It really depended on the occasion, with no rhyme or reason.

Then came the anal gland impaction diagnosis. This one seemed legit for a while. We did have more than one trip to the ED where, once his glands were “expressed,” he had relief of his pain. But not always. And sometimes they weren’t full at all. So the search continued. Unfortunately, this search usually took place in the ED in the middle of the night with a new ER doc who had never met Baxter before. Yes, I took him for regular vet visits. He’s actually on the every 6 months schedule now due to his furry old man status. We did a bunch of tests that resulted in a whole lot of nothing.

I think the next one after that was the rock in his stomach resulting in surgery to remove it. The thing with this one is, once you’ve done an abdominal X-ray on a dog with severe abdominal pain and you see a rock in there, it’s hard to take him home while he’s still screaming out in pain and shaking like a leaf. So surgery it was, we got a beautiful little rock about the size of a lima bean for all of our trouble that go around. Did it stop his pain? Hard to tell really. I mean, we literally cut the dog open in hopes of helping him that time. He was probably like “Guys, I’m sorry I complained. Please don’t put me under the knife again.”

Big shocker coming up now guys, it did not in fact “cure” him or make this not happen again. The next ED visit we got “severe osteoarthritis” added to his list of diagnoses. So some pain relievers were added in to the mix.

The next time it happened it was actually first thing in the morning when it started. I thought, great we can call the regular vet office and get him in this time with someone that knows him and they can actually see what’s happening. Except, no. It was our regular vet’s day off and there was literally no-one in the office that could see him that day. I’m sure I’m not going to be the first person to point out that, among other serious problems we’re all facing right now, a nationwide vet shortage is definitely one of them. So we shlepped an hour away to an emergency vet clinic that is open 24/7. I will not bore you with all the painful details of that day for us but rather just say that by the time we were seen, the episode was over. But it did get us an upcoming appointment with an internal medicine doc in the same clinic. That was last week.

The morning of his appointment he started to act weird, like he always does when these things are happening to him. Baxter may not be able to speak words to me but he has definitely found some unique and interesting ways to tell me when something is wrong. The easiest way to describe it would be to say that he becomes incredibly annoying. He climbs over me on the couch, stands on my feet, repeatedly bangs into the bathroom door when I’m in there, and (my personal favorite) stands in the corner where Levi’s toys are and spins the Sit N Spin with his foot. Literally anything to get my attention. So this particular morning I thought we were so lucky that it was happening for his internal medicine consult and abdominal ultrasound. That was a double edged sword for sure.

We do now have a diagnosis, acute pancreatitis. We also have had the worst, longest, and absolutely most complicated round of this thing that we’ve ever had and I hope to ever have. The thing with pancreatitis is that you can control the risk factors and do your best to control the symptoms but you can’t really cure it per se. So lifestyle modifications (sounds a little weird for a dog) like a very low fat diet, weight loss, more exercise are all what he needs long term. But it’s been an exhausting week and a half trying to get him to bounce back from this bout. I’ve literally been taking care of him around the clock all this time with trips back and forth to the internal medicine clinic, constant cleaning of the house, linens and the dog, hand feeding him to get him to take his meds, the list goes on.

Monday morning he woke me at 4 am to tell me something was wrong. First off, if this old man is awake before 7 there’s a problem. The problem? Projectile, explosive diarrhea. And lots of it. Back to the clinic. Guys, since Monday I’ve been dealing with round the clock diarrhea. We’re not talking the “hurry up and take me out” variety. We’re talking the running down the dogs legs without him even knowing it’s happening kind. So I’ve been cleaning poop all week; off the floors, the linens, the dog, myself. You name it, I’ve more than likely cleaned poop off it this week.

I am very happy to inform you all that today we seem to have taken a turn in the right direction finally. We were back at the clinic yesterday. I was very discouraged. He just wasn’t showing any signs of improving and it was wearing on me. Not just the constant cleaning or the week with no sleep. It was the watching him in such excruciating pain, that was what I wasn’t sure how much more I could take. And I had that conversation with the vet. The conversation about is it time? Is it time to just stop his pain? But he had been researching new ideas for treating pancreatitis in dogs and wanted to try adding in some steroids. Apparently that was what poor Baxter’s pancreas had been waiting for all this time. I hesitate to even type these words but it has now been almost 24 hours since I have seen anything involuntarily eek out of the dog’s butt.

So why have I gone into such great detail describing my dog’s diarrhea to you all? And what does it have to do with our humanity? Well, to say that a lot of emotions and memories from when I was taking care of Mister came flooding back up close and personal while all of this was happening would be an understatement. It made me think about all the things I had to do to care for him when he could no longer do them for himself and how we both felt about it.

It started off as little things after his first surgery. Driving, for instance. Not a huge thing really until you can’t do it anymore. Buttoning his shirt. Again, not that big of a deal. But obviously as things progressed it became things like assistance with showering, counting out his pills, help with his seatbelt. Middle of the road type of assistance.

And then the last few months it was everything. Shaving, toileting, eating, all of it really. Everything you do every day that you take for granted, he needed someone to do it for him. Every last little detail he was no longer able to do for himself. It’s hard to imagine being on the other side of this, being the one needing all this care. So I did everything I could to care for him the very best way that I could, down to the smallest detail, and I really did try to do it with grace and with as little complaining as possible. No one asks to have this happen to them. No one wants to be fed, dressed, have their butt cleaned by someone else. But as human beings we also need to be fed, dressed, have our butts cleaned.

The greatest gift you can give another human being is to do something to care for them and then never mention it to them again. If someone you love needs help in the bathroom, just do it and let it go. It was more emotionally painful for them than it ever will be for you. Have a neighbor that has mobility issues? Mow their lawn and never mention it to them again. It’s really that simple.

So now I’ll get to the actual reason for my choice of topic. I feel like more and more people are losing their sense of humanity. I feel like less and less people actually care about the safety and well being of others. We are all humans, all with human needs, human emotions. And we need each other. “No man is an island” and all that. We need to care for one another. Be compassionate. Care. Or else it’s all just a bunch of shit (no pun intended there, with all my butt talk). Sometimes the compassion and care comes on a grand scale, with a big sacrifice. But sometimes it’s having a bit of conversation with an elderly person in the grocery store. You might be the only person they get to talk to that day. It might be patiently waiting with a smile while someone in a wheelchair gets into their car before you can get into your own. It might be the only time all day that they don’t feel rushed or like the whole world is annoyed with them. All these little things add up to the sum that makes us mankind.

Including getting vaccinated. This is the easiest, most simple way that we can care for one another at this time in history, guys. The people that have stepped up to the plate and gotten this vaccine, we’re the brave ones. Not scared or sheep or ill informed. We need to do it to protect one another, to protect our children, to protect the vulnerable. But mostly, we need to do it to protect our own humanity.

Welcome back everyone. I wanted to talk about time today; what it is, how we think about, how our thoughts on it affect how we live our lives, and how these thoughts can change day to day. Oxford dictionary defines time as “the indefinite progress of existence and events in the past, present, and future regarded as a whole.” Our time here really is indefinite. No one knows for sure exactly when their time will run out, some of us just get a little more warning than others. So here’s the question for you all; if you could know exactly when you were going to die, would you want to?

A couple of years before his diagnosis, Mark and I had entered a stage in our lives where I was starting to think a lot more about what I wanted to do with the years we had left. We had both left our long term jobs and were focusing more on us, our family, the future of our work in Grenada. I had a travel bucket list that I wanted to start checking locations off from (we made it to one). We laughed about the fact that he still tried to say we were middle aged. I would tell him that if, in our 50’s, we were middle aged that meant we were going to live to be in our 100’s. I wanted to slow down more, work less, enjoy life more. I would’ve been happy with both of us working travel assignments 3 months at a time with months off in-between.

Mister was another ball of wax. As much as he loved me, our family, and our life he had another great love and that was medicine. He wasn’t a big fan of all the bureaucracy that went along with it. But the medicine part, saving lives, helping make other people’s lives better; he was all in for that. He had convinced me after months of travel work with varying amounts of time off in between that he should take a full time job again. I was hesitant but it was a good opportunity and we had our precious Levi on the way so I gave in. He started that job just 2 months before diagnosis.

So after that first week of sheer terror; diagnosis, ambulance transfer to Brigham and Women’s Hospital, scans, craniotomy with tumor resection, and a brief stay in the Neuro ICU we were back in our nest. I say brief stay because we were literally there for less than 48 hours after his surgery. His physicians wanted him to either go to a step down unit for a few days to rehab or to go to a rehab facility for a few days. So naturally, Mister being Mister, we came right home. Less than 48 hours after literally having a piece of his brain removed, 15 staples in a horrific line down the left side of his head, barely rehabbed enough to make it up the stairs to our bedroom we were out of the hospital. We were shell shocked to say the least. There was plenty to do; physical therapy exercises, treatment planning, paperwork on paperwork, visits from family and friends, errands upon errands, and of course hours and hours of internet research. I was in fixer mode looking for any way to save my husband. Mark once described my fixer mode as having a situation room but really it was just a mental one.

You can literally read articles about glioblastoma, treatments, research, whatever for days at a time. There are “promising new treatments” and lifestyle changes. But once you get into the nitty gritty of any of them, the statistical differences that they make in the outcomes, they really don’t pile up to much more than a hill of beans. But I still had all my research printed out in a neat pile to carry in to our first visit with the neuro oncologist. I had read quite a few articles about using a keto diet in conjunction with other treatments and couldn’t wait to talk with him about it. I’ve always been a believer in food as medicine so surely I was on to something here, right?

The first physician we saw was actually covering for our NO (neuro oncologist) as she had missed a flight back to Boston after the holidays. Ironically, we would also see him for our last appointment at Dana Farber since our lovely NO was at that point out on maternity leave. He went over Mark’s tumor markers which we had already received a call about before we got there. Our treatment options would be based on these specific tumor markers, methylated or unmethylated. I’ve talked in a previous post about these markers but just to review basically methylated has been found to be much more responsive to chemo. Unmethylated, well let’s just say not so much. Our monster was unmethylated, the least cooperative of these beasts. So we spent quite a bit of time that day going over our options. If you have a methylated GBM the treatment after resection is 30 doses of radiation and a course of chemo. Unmethylated is more of a wild card. We were given literally hundreds of pages of info about the various clinical trials that we could enroll in, told to take it home, read through it, and decide on our own which one we wanted to try. I’ve always thought we were fairly intelligent people obviously with a strong medical background but to say that this task was daunting would be an understatement.

After all of our options were laid out for us, I was ready to present my evidence on a keto diet for GBM to see what this physician’s thoughts were. I told him about all the research that I’d done and asked for his opinion. His response was that, yes there have been studies suggesting that a keto diet does give a slight statistical advantage over a standard diet. I’ll forever remember this physician for his candor. There were two that stuck out this way at Dana Farber and Brigham. We loved all of our providers there, don’t misunderstand. But when it came to the hard questions, the ones you have to brace yourself for the answer, well we figured out fairly quickly who to ask these questions of. So back to his answer, yes slight statistical improvement in outcome but then the real answer. He said, it all boils down to how you want to spend the rest of your time.

So there you go. Do you want to spend the rest of your days eating a diet that doesn’t make you happy while death stares you in the face? Or do you want to YOLO and eat whatever makes you happy? Since starting to write this piece I’ve realized that this all ties into the grief stages as well. I had been a vegetarian, pescatarian really, but had not eaten any land animals for 10 years. I’ll get into that more at a later time but it was about health, the environment, and compassion for animals for me. All of that went out the window when Mark was diagnosed. I was literally willing to do anything to keep my husband alive.

So I did try for a couple of weeks to keep him on a keto diet. It’s kind of comical now, looking back on it. God love him. Mister was fine with the keto diet all day but come evening time it was over. One thing that came with his diagnosis, especially with it being right before Christmas, was carbs. Every day baskets of goodies were being delivered to the house. Basket after basket of cupcakes, cookies, whoopee pies, literally every kind of treat you can imagine. So all day he would be high protein and no sugar. Then the sun would go down and the treats would come out. I tried for a bit but honestly, how can you restrict the diet of a man that’s facing his own mortality? So I quickly gave in but had also given up my healthy, compassionate diet at that point. And let me tell you, we YOLO’ed hard after that. We made every trip to Boston for radiation, 30 in the first round, into a day trip. If we had to go into the city every day for a 10 minute appointment, we might as well get a great meal out of it. We also still had our Massachusetts apartment and I had introduced Mister to GrubHub. So some of these days we were eating 2 ridiculous meals, delicious but ridiculous. And don’t even get me started on the snack station at radiation therapy. So that was one way that we decided to spend the rest of his time, eating everything that made us happy. I managed to gain 25 pounds that winter reaching a weight that I had never seen before. I know, I know. No one cared about my weight or what I was wearing but soon enough I had a hard time fitting into any of my clothes and wasn’t really in a position to go shopping for myself either.

GBM is a tricky one with deciding how you want to spend your time as I suppose all cancers are. you’re supposed to fight, right? The “great battle against cancer.” So if you’re honest and accept the prognosis, decide you want to do all of the things on your bucket list, does that mean you’re not a fighter? *blog for another time alert*

Mister also wanted to focus on going back to work. I think this was his way of keeping hope alive. It was difficult for me to accept, still is really. It’s difficult to accept obviously that your spouse has a terminal illness, but for them to then focus entirely on returning to work is another thing. In the back of our minds we both knew what we were looking at. So how could he be so focused on physical and occupational rehab so that he could go back to work? How would that even work? I mean, I honestly couldn’t imagine him being allowed to go back to the Cath lab with residual tumor. But it kept him focused, gave him goals. He might have been working so hard in OT so that he could manipulate a catheter and guide wire in the lab again but it got us back to a point that he could button his own shirts again.

All of this went out the window late in the summer of 2019 anyway when he, out of the blue, had another seizure. Another cosmic punch in the face. “Surprise, mother fuckers, I’m back.” An MRI confirmed the obvious, the monster was growing again. And rapidly. So then we were forced to regroup all over again. Seizures were happening almost every day with less than subtle after effects. These were bringing aftershocks like we had not seen before, marked paralysis of his right side for hours at a time and occasionally losing his ability to speak. So our neurosurgeon offered us a second surgery as a “heroic measure.” She explained that it would not be as delicate as the first surgery in which she was very careful to leave his speech center and motor skill center as intact as possible. This one would be to debulk the tumor to hopefully stop the seizures and buy us some more time.

He didn’t want it. He just didn’t. He was terrified. He was tired. I called a family meeting. We had all the kids and their SO’s come to the house basically so that we could talk him into it. None of us were ready yet. So that’s what we did, talked him into a second surgery. The thing is, obviously none of us had a crystal ball. We didn’t know anything about how the surgery would go, what the outcome would be. We just wanted the seizures to stop and for us to have him in our lives longer. #teammoretime

There’s a lot to talk about that happened after his second surgery, too much for now. The bottom line is that it did stop the seizures and we did get more time. Was it the type of time that we wanted, more specifically that he wanted? That’s another story. That’s a “be careful what you wish for” story. Most of the time that we got out of it was not what he wanted, not how he wanted to spend his final days. The residual effects of the surgery were not subtle and he was left more dependent on me than he wanted. And it was downhill from there. But we didn’t know. In retrospect I think the second surgery was a mistake. But I also think if we hadn’t done it and we had lost him sooner that I always would’ve questioned that decision. I would’ve always felt like we should’ve done more.

So now let’s go back to before, before the punch in the face from the universe, when we lived in ignorant bliss of how our story would play out. We were both pretty healthy people. We ate well. We went to the gym regularly. We tried to be as active as possible. We saw so many people in our profession over the years that abused their bodies and then ultimately paid the price for it. We didn’t’t want to be those people. We wanted to take care of ourselves and live long happy lives as a result. We didn’t know then that we were the “other people” that bad things happened to. We thought we had some control.

I think I’ve decided after all of this that I’d like about 48 hours to know that my time is up. That would give me enough time to say all the things I want to say to people. I could sit with each of my loved ones and tell them how I feel, what they mean to me, my hopes and dreams for them. I could tell off the very few people left that I haven’t had the opportunity to yet ( I mean, if you know me you know that list is pretty short since I think I’ve said my piece to most). We have a close family friend who recently lost her Dad suddenly, no warning just right out of the blue. That shit’s not right. Everyone is left in shock, traumatized by what happened. You get no “last words.” But let’s face it guys, 2 years of knowing it’s coming, watching that person decline, disappearing really right before your eyes while provider after provider basically tries to avoid making eye contact with you at appointments; that’s just too much. By the time we really knew it was getting close, Mark was not able to speak. He had missed the window of getting his last words out to people. We had had several conversations so I feel like he had gotten everything out to me. He was able to indicate in the last week or so that he wanted some time alone with each of my kids so they sat with him holding hands and feeling the love. That really was all that was needed. The aphasia had stolen anything else anyway.

So we’re left in the great abyss of life. Do I have 40 more years or 5 minutes? Do I eat the cake or go for a run? Do I go back to work to fill the hours or do I spend my time doing nothing but what makes me happy (any suggestions would be great 😂)? For quite some time while Mark was sick and then for several months after I really felt like all of this is out of our hands. Some reasonable, rational part of my brain has started to wake up from this nightmare though. Have no fear, guys. I know that a lot of our health is in our hands. But I have also learned the harsh and valuable lesson that some of it is not. So I’m going to eat the cake and maybe go for a long walk after. I have managed to lose the 25 pounds that I gained. I started to take a statin for my cholesterol which I had refused for many years. I had always been able to keep my cholesterol at a reasonable level (not according to my cardiologist husband) by eating super healthy and exercising. Our months of YOLOing and me introducing meat back into my diet did away with that and left me with a 40 point increase in total cholesterol. Okay fine, I’ll take a drug, try to reign in my diet a bit, but definitely still have the cake. Mental health is also a part of this. I no longer have space in my life for people that don’t bring anything to my table, people that suck the joy out of my life. I guess it really is all about balance.

So now that you’ve read all of my ramblings for today, what say you? Do you want to know when the reaper is coming for you? I think I’ll stick with my 48 hours answer for me and for my loved ones.