Categories
After

Small World

And I don’t mean that in a good way.

About two months before “the day” we were at our Massachusetts apartment, it was evening and I was on the couch with Mister watching tv when I got a text alert on my phone. It was from my son, Casey. Just a simple question really but the kind of question that triggers a mom straight into panic mode, fixer mode as I’ve come to know it. Maybe not just moms but I know that all moms out there definitely get what I’m talking about. It was the kind of text that you find yourself on your feet before you even finish reading it, before you’re even aware that you’re on your feet pacing the room. It was the kind of text that gets an immediate call back instead of a text reply. All it said was “what do you know about glioblastoma?” Now keep in mind this was before our worst day, before the carpal tunnel surgery even, when we still thought we had so much time.

Of course my first question was “are you okay?” followed by “where is this coming from?” He then proceeded to tell me the story of someone else’s worst day, the day that his girlfriend Alaina’s Uncle Gary had been diagnosed with a glioblastoma. I remember feeling so sad for them because I knew what it meant. I knew that family would never be the same. I also knew it was going to happen fast. Little did I know at the time how soon our world’s would intersect. In just the course of two months my son and his SO would have a step dad and an uncle both diagnosed with literally the worst type of brain tumor. What are the odds, right? I mean, one of the first things you usually hear about glioblastoma is how rare it is. I’m here to tell you that of all the things I’ve learned about glios, more than I ever wanted to know in fact, that this is simply not true. The least scientific reason is that almost every single person that I know or have spoken with about this “rare” cancer knew someone else who has had one; friend, relative, coworker, someone.

So now we can get into some numbers, statistics about brain tumors in general and more specifically about glioblastoma. I think most of this will probably surprise you. There are currently over 700,000 people living in the United Staes alone right now with some type of brain tumor. In 2020 over 84,000 new brain tumors were diagnosed with approximately 13,000 of those being glioblastomas. New England has some of the highest rates of glios in the country.

No one knows what causes them and, quite frankly, no one has any idea what to do with them. Primary treatment is generally surgical resection followed by chemo and radiation. Not every patient qualifies for surgery depending on the size and location of the tumor. The way that our neurosurgeon explained the surgery was resection not removal, there’s no way to actually remove 100% of the disease. You remove what you can while trying to spare as much healthy brain tissue as possible and then hope that radiation and chemo will slow any regrowth. And actually not all patients qualify for the standard chemotherapy drug, Temodar. About half of all glioblastomas have tumor markers that have been shown to be unresponsive to this standard chemo. Guess which one we got? Sucker punch after sucker punch. They’ll “let” you take the chemo drug anyway if you want. So you do, at least in the beginning anyway. Until it fails and you’re left choosing a trial drug.

There are currently only five drugs FDA approved for use with glioblastoma patients. This number and the drugs themselves have not changed in the past 30 years. Let that sink in for a minute….. Actually lets just say it again. The drugs to treat glioblastoma have not changed in 30 years. Which wouldn’t be such a big deal, I suppose, if the drugs actually worked.

Glios pose two distinctly difficult problems to treat. The first is the whole blood brain barrier situation. Basically the blood brain barrier functions as this pretty cool protection system to keep things from reaching your brain like bacteria or infections that could be circulating through your bloodstream. Awesome, except for the fact that it also keeps chemo drugs from getting through to fight the growth of these monsters. The other major problem is that no one lives long enough to really get a good chance to study these things. A few unicorns do, but not enough to really have a valid scientific study. Which is why when you’re presented with your options of studies to enroll in, almost every single one is a phase one trial meaning that its new and a complete gamble. I’ve got a whole segment on the studies for you all at some point, from the magnetic hat to the live polio virus infusion straight on through to a whole parade of drugs.

In my opinion the “rare” title comes more from the lack of progress than it does from the actual rarity of the disease itself. It makes it easier to focus on other types of cancers which have become easier to treat and have had improved prognoses while glioblastomas take a backseat. It reminded me of when my son was in elementary school and they were getting ready for standardized testing. Kids that either marginally passed the practice tests or had almost passed were being kept after school to work on their testing skills and areas they needed improvement on to pass. Kids that were nowhere near passing, those kids didn’t get help. Why? Well, it was explained that they couldn’t provide enough help to get them to passing scores before the test date. See where I’m going with this. Let’s focus on the ones we can improve on quickly and maybe no-one will notice the rest, the ones left behind.

So two men, almost the exact same age, both husbands, fathers, grandfathers, living just a few miles away from each other are diagnosed 2 months apart. Both with glios but in different lobes of the brain affecting them in different ways, different treatments, different research studies, both living almost exactly the same amount of time after initial diagnosis. While I don’t think it’s very common for two people to end up with two glios on either side of their families at the same time I think that my son and daughter in law, caught in the intersection of the world’s most fucked up Venn diagram , are living proof that glioblastomas are not that rare at all and this being such a small world is not always such a great thing.

Categories
After

The Hardest Part

Hi all! Welcome back. Here I am with this week’s post on Friday with my self proclaimed deadline of Wednesday. Oops, almost made it. So here we go with the story of the hardest part. Don’t get me wrong, there were quite a few contenders in my opinion. But there was one that stuck out as the clear winner, hands down as far as Mark was concerned. This person who obviously took all the hits to his physical being over and over in a futile attempt to slow down this monster and then the consequences that came with all of our attempts.

When I finally arrived in the ED that day after the longest two hour drive of my entire life I had to wait in line to check in at the ED desk. I was just on the verge of a full blown panic attack. To finally make it all that way, the miles I had just driven with my mind racing, trying to make this in to something that we could fix to stand in line was almost just too much. I honestly was probably in that line for no more than 5 minutes but as I stood there with my heart racing and my blood pressure enough that there was this loud whooshing noise inside my head.

I finally made it to the desk and the receptionist said that someone would be out for me momentarily. Seconds later the doors opened and a nurse appeared. I can tell you right now that as soon as I saw her approaching me I knew the news was not going to be good. She had the sweetest, kindest look on her face. The look of true concern and deep compassion. Once I verified who I was, she took me by the elbow. That was the clincher, when she took me by the arm, touched me to say “let me take you to him.” On that few seconds walk, 30 or 40 seconds probably, she asked about my drive and if I had come by myself. Small talk really, to ease the silence but all I was fixated on was how kind she was being to me. That kindness transformed into a giant rock in my stomach by the time we got to the door of his ED room.

Working in healthcare as long as we did, especially with the acuity of many of the patients that we cared for, I can tell you that there are different types of kind. There’s the kindness that you show patients and their families on a day to day basis. Then there’s the type of kindness that you show a patient or family member when you’re about to tell them something terrible, something that will shatter them, bring them and their entire world to its knees. That’s what this was, the later of the two. I couldn’t even make eye contact with her, because I knew and she knew exactly which type of kindness this was.

So just in that short walk, heart rate through the roof, whooshing in my ears, pile of stones in my stomach her kindness had already told me so much of what was happening. When she reached to pull the curtain back I thought my knees were going to buckle underneath me and although I hadn’t eaten anything all day I was sure I was going to vomit.

And then there he was, my Mister in a hospital gown tucked in on a stretcher. Such a bizarre sight for me. He was supposed to be the one in scrubs standing next to the stretcher or often perched on the edge of the stretcher so he could be closer to the patient. Definitely not the one on the stretcher with this panicked look on his face.

As soon as he saw me he simultaneously burst into tears and blurted it out. It was almost like it was involuntary, like he projectile vomited the words at me. “I have a tumor in my brain.” Just like that. There it was.

All I really remember after that was crawling up on top of him on the stretcher. Wrapping myself around him and holding him as tight as I possibly could. The nurse had left us alone at this point of course. For the next few minutes we just stayed like that, tangled into a ball trying to be one person, bawling our eyes out. He told me about what had happened; the seizure, the walk to the ED, the CAT scan.

Not long after the ED doc came in to see us, also so incredibly kind. He gave us a couple choices of hospitals for Mark to be transferred to and we agreed on Brigham and Women’s Hospital. Arrangements were already being made for the ambulance transport meaning that we would be on the move in a very short amount of time which brings us to the point of this particular story, the hardest part, the part that would beat every other aspect of this terrible disease. That part was the telling, telling the people that we loved and loved us what was happening.

That’s the thing, guys. He just could not bear to tell anyone, especially our kids. It’s one thing to have your life shattered into a million pieces to have something so painful happen to yourself. But to then have to turn around and inflict that kind of physiological pain on people that you love, some of them being people that you’ve spent a good part of your life trying to protect; it was all just too much for him. Not that it was any easier for me but he just couldn’t. After those words had come flying out of his mouth at me with the kind of tears that come from deep inside of your soul, I couldn’t ask him to do it again.

I had to zip out to the waiting room to make the calls, several rapid fire calls before the ambulance got there. I called Mark’s son first, my son and daughter next (I honestly have no recollection of which one first), and then my best friend. Every single call was as painful as the next, shattering lives with every word.

One of the most common things I hear from people is “I can’t imagine…”. But the thing is, you almost can. I mean, some of you reading this were the recipients of those calls or other calls like them. Maybe some of you have had to make the calls. But if you’re not, just take a minute to sit quietly with your phone in your hand. Find that person on your contact list that you would give your own life to protect. Force your brain to imagine calling them to tell them news about yourself or another of these people that help make your life worth living, news that will break their hearts. The next time your phone rings, just before you answer, imagine that you’re about to get the worst news of yourself life. The problem with this experiment is that your brain will try to protect you from that horror. So it really does leave it just out of reach, just out of the realm of possibilities.

Anyway, as the whole story progressed over the course of the next 20 months Mark could never really get past that feeling, that telling people that he had a terminal super aggressive malignant brain tumor, was the absolute worst part. The man went through 2 craniotomies with tumor resection, 40 rounds of radiation to his brain (which I will describe in more detail another time but let’s just say this is not for the faint of heart), countless rounds of chemotherapy, hours upon hours of PT and OT, endless doctor’s appointments if so many varieties but he could never bring himself to tell people what was happening.

I remember that spring after the dust had settled slightly. The first surgery was a few months behind us as well as the first six weeks of radiation every day Monday through Friday. We had just gotten home from the grocery store and were in the process of bringing all the bags in from the car when someone knocked at the door. It was Bob, our neighbor from up the street. Spring was just starting to emerge which is a welcome sight here in Maine in general, even more so a mile and a half down a dirt road with limited winter access. Bob half jokingly said he was just stopping in to see if we made it through the winter okay. Mark’s immediate response was “Yes, we’re good Bob. How are you?” I have to admit that my mouth was probably still hanging open through Bob’s response and then Mark’s retreat to the garage to collect the rest of the groceries. So while I told Bob what was going on. We were still talking when Mark returned and I think he was genuinely surprised when he realized I had taken the hardest part on for him again. When it was just the two of us again, Mark asked why I would tell Bob something that would make him so sad. That’s really how he saw it. This man that I thought was so fearless and brave was actually terrified of one thing, hurting people that he cares about.

We made one last trip to Grenada that spring, our home away from home for the past 20 years. When the staff at the place we stay asked where the rest of our team was, why it was just the two of us he just simply replied that everyone was busy and couldn’t get time away.

There was another trip to Mexico with the family to renew our wedding vows that spring. We stayed at the resort we went to for our honeymoon and then had become a regular spot for a quick birthday getaway for me year after year. Some of the staff there asked about the four inch scar from his craniotomy, genuinely concerned as we had gotten to know some of them pretty well over the ten years of return trips. Once again, brushed under the rug. He was fine, just some minor health issues.

I could go on for hours with examples but I think you all get the idea. It never got any easier for him so this became one of the burdens I took on. I think some people may look at all this as unfair to me, making me the bearer of the bad news, but I never saw it that way. It was a heavy stone that I took from his cart and carried in my own. Because that’s what you do when you love someone. You help to carry their load, lighten the burden that they’re carrying, take their hardest part away from them.

Categories
After

Embracing the new me

Welcome back. I decided to make this post about how things are now for me in the after rather than continue on with a story from before or even during. I guess because I got side tracked this week and hadn’t gotten post out yet. When I started this blog I had made a promise to myself that I would have a new post up every week by Wednesday at the latest. Yet here it is Saturday and I still hadn’t gotten a post out. I have at least a dozen stories started, most just about complete but every time I sat down and stated to read through them, trying to figure out which one to share and how I could wrap it up, I just couldn’t do it. the harder I tried to force myself to get one done, the harder it got. So I did a little soul searching and this is what I came up with.

When I worked at my forever job at the hospital I worked full time plus taking call for emergencies, a self proclaimed workaholic. I honestly couldn’t imagine what I would do with all of my time if I didn’t work. I worked so much and carried the beeper so often that any time off was jam pack with all the other things that needed doing. I was a master of errand running, meal prepping, going to the gym, dog walking. You name it and I could cram it into a single day off or even a couple of hours in the evening if need be. Don’t get me wrong, there was plenty of fun too but we used to pack that into our busy schedules just the same way. All of this overlapped with Mark’s schedule of course since his was similar to mine. It was all very consuming but yet I think made easier by the fact that we shared in all of this, the crazy commitment that is Cath lab life.

When I first left the hospital we had both worked there for 25 years. I took a travel assignment at Brigham and Women’s Hospital in Boston for 3 months. Typical contracts are for 13 weeks but I could only commit to 12 since we had a trip to Grenada planned for our volunteer interventional cardiology program that we had been involved in since 2000. That was the plan at that point, to work travel contracts and take time off in-between. My kids were grown and out on their own. My parents had both passed away. I felt like I finally had some freedom to make choices that were better for me.

So when my contract was finished and our trip to Grenada was over I was back at the lake to do exactly what I wanted to and not one thing more, total freedom. Except that time came to me in the form of a giant abyss that I truly had no idea how to fill. Don’t get me wrong, it was nice but Mark was still at the hospital so there were many days that dragged on; dinners prepped at 2 in the afternoon, even what we came to refer to as “touch up vacuuming.” You get the idea I’m sure. I was suddenly the “retired” person twiddling my thumbs wondering if it was too early to make our dinner salad. I persevered, though (insert sarcasm here) and made it through the summer to start another contract in the fall.

Fast forward to after his second surgery in August of 2019 when caring for him really became a full time job. Even more so after the perfect storm that came in March of 2020. That’s when things really started to accelerate. His level of care became greater and greater every day between that time and his passing in August of that year. By the time we got to the summer months; June, July, and the beginning of August he required 24 hour care. Yes I had help and so many offers of help but I really wanted to do all that I could by myself. I knew we had a finite amount of time left and I really didn’t want to miss a minute of it, no matter how difficult it was. And of course, in my own mind, no one else could care for him the way that I did. I hardly slept but I had a purpose, to make him as happy and comfortable as possible for the time he had left.

But then it happened, I finally and what seemed like suddenly had a very giant opening in my schedule again. I was once again faced with an abyss. This time was bigger though, it was a giant black hole that appeared after my entire universe imploded. Obviously the first couple weeks are filled with all the bullshit stuff, not sleeping of course for me but everything else. There’s funeral arrangements, equipment returns, so many phone calls, moving back into my bedroom, paperwork (why is there always so much paperwork?). Then there I was staring at this abyss, this giant black hole. Maybe the times before had been practice runs for me but at least during those times Mister had always been there for me. When I worked in Boston 4 days a week we always had morning and evening report. When I was home at the lake and he was at work we could text when we had a second. He was always there to talk to. This time the abyss was silent. Yes, I had and still have family and friends who have helped to hold me up through all of this. All of the love helps but honestly it does nothing to fill in the abyss.

So let’s take this giant abyss, this black hole and add in a fair amount of post traumatic stress, a generous portion of anxiety, some run of the mill sadness, and at least a year of personal neglect and here I am, in all my fucked up broken glory. Anxious, tired, and with a serious attention deficit disorder, Ta-Da! Me, in what I’ve come to refer to as my “fucked upness.”

The start of my week was hijacked by a whopping round of brown tail moth caterpillar rash and a few days of steroids. I’m sure the steroids didn’t help with my attention deficit. Every story that I looked at this week just seemed impossible for me to complete, impossible to get just right, to tell the way I wanted it told. I couldn’t get my thoughts straight to organize my way out of a paper bag so I decided to at least try to better explain who I am now.

I’m trying to embrace this woman that I have become for the time being, let myself go through this process. This person that I am now is here because of the wonderful love that Mark and I shared and also because of the hell that we were both forced to endure. I have days were I get up and dive right into my day, my “to do” list, days that I suddenly realize its dinner time. But I still have days were my mind is whirling enough that I have trouble getting anything at all done. Those days are fewer and farther between but they still happen. When they do happen it seems like trying to force myself to concentrate only makes things worse, my anxiety kicks in and I get panicky about why this is still happening.

I’ve decide to own all of these things that are happening in my mind. Not to let them control me but to honor how I ended up here, how I ended up like this. To embrace my fucked upness. So this is the me you all get for now while I work through this process and slowly learn to live with this giant hole in my life. The abyss will never be filled, I just have to learn how to live without being swallowed up by it.

Categories
After

The monster in carpal tunnel clothing

Before I get into the story of “the day,” the one when everything changed, I have to backtrack a bit to another story and some background info. This one is the story of carpal tunnel, or maybe it’s carpal tunnel, or most likely it’s carpal tunnel but it doesn’t really matter.

I’m not sure exactly when but early on in his cardiology career Mister was diagnosed as having a cervical rib. Way before we were a couple and just coworkers I remember talking with him about it. It’s basically just an extra rib that comes off a cervical vertebrae, so in the neck just above where most people’s first rib is. Unfortunately it can cause something called thoracic outlet syndrome which can manifest in different ways depending on what is getting squished up there in the neck/shoulder area by that extra rib. His was neurogenic meaning a nerve was getting pinched causing numbness and tingling down his arm, sometimes all the way to his thumb. And of course this was on his right side which was also his dominant arm. Surgery was discussed but he felt the risk associated with it was too much. So he opted for physical therapy and learned over time how to cope with it.

During this work up he was also told that he had mild carpal tunnel syndrome in that wrist. Not bad enough to warrant surgery but just to be aware of it. So that was also always there in the back of his mind.

Healthcare in general is an extremely physically demanding field. Our’s in particular is even more so. Long hours on your feet standing on hard floors covered head to toe in sterile garb while wearing lead skirts and vests underneath is not for the faint of heart. Add in long hours sometimes without breaks and sleep deprivation from call ins at all hours of the day and night and it’s not hard to see why people in our field are always looking for ways to ease one pain or another. New shoes, new orthotics, new lead, better belts to keep the lead off your shoulders, massage therapy; you name it and a Cath lab person will try it for some relief. Just like nature’s evolutionary process, we learn to adapt to our environmental situation in an attempt to be more comfortable, have less aches and pains.

So that’s what he did. Stretching exercises to keep that space in his neck open. He found hard soles shoes made it worse so switched form Merrill’s and Dansko’s to sneakers and then eventually to Croc’s. His crazy colored Croc’s became a signature “Mister-ism” which so few people knew the story behind.

Before he took his last position in Massachusetts he did some locum work in Hannibal, Missouri. Don’t worry, there are plenty of stories to come about we New Englanders heading out on a road trip, Baxter in tow, to spend some quality time in the great state of Missouri. Anyway, he mentioned to me a couple times over the course of that summer that his carpal tunnel was acting up. He had some numbness and tingling in his right arm again but it was the pain in the center of the palmar side of his wrist that definitely pushed him toward the carpal tunnel. As usual, he just coped with it when it would flare up. It never seemed to last long and a lighter work load mixed with time off between assignments seemed to keep it manageable.

So I guess it came as no surprise that when he started his Mass job that the symptoms worsened. He was working more and busier when at work. He found a neurologist and had an EMG which is a test for muscle and nerve function. Like all physicians, even the ones in specialties, he had already diagnosed himself before his appointment. Hearing the neurologist say that based on the EMG that his carpal tunnel space was very tight was exactly what he expected. They talked about the fact that his numbness distribution wasn’t exactly consistent with carpal tunnel syndrome but he chalked that up to possibly the cervical rib. I mean, of course, right? So he was referred to an orthopedic surgeon for a quick ligament release and then we’d be on our way. Easy Peasy.

We scheduled his surgery on the Friday of a holiday weekend so he’d have an extra day at home to recuperate. He had a great surgeon and was scheduled first case of the day. Everything went without a hitch and we were out of there before 10 am. The early winter storm with sleet and freezing rain made the drive back to Maine a little more interesting but overall the whole thing was a breeze and we were back in Chipmunk Lane to recuperate by the middle of the afternoon.

In my mind and I’m sure his, we had made it past this hurdle and were in the clear. We could proceed with life worry free, right? His incision healed, he was back to work. Everything was right back on course. Except for that one minor detail, the only one that actually really mattered. His carpal tunnel symptoms weren’t any better. So we were left wondering, was this his cervical rib? Would PT help? All the while this terrible ugly monster had started to whisper to us “hey morons, over here.” We just couldn’t quite here him yet. It wasn’t much longer before he reared his ugly head.

So on that fateful day, my punch in the face day, as I listened to him describe his seizure all I could think was that it had to have something to do with his surgery, which was only 4 weeks prior. It was what’s called a focal or partial seizure. It’s not the kind most people think of when they hear the word seizure, not the kind you see on tv when a person falls to the floor convulsing. A focal seizure affects just a small part of the brain thus causing symptoms very specific to that region.

He was at work getting ready for the Cath lab cases for the day as he was the doctor on call when it started. His hand flipped over palm up and started to contract all on its own. His hand just kept opening and closing, like he was trying to grab something, over and over again. He told me he stared for a few seconds and then just stood up and started to walk toward the Emergency Room all the while staring at his hand making these bizarre completely involuntary motions.

You see, the thing is guys, he said he knew as soon as the seizure started what was happening. He knew the second his hand started to move on its own that he had a tumor in his brain. Before he had any imaging or a neuro consult. Let that sink in for a minute. However long that walk was, 2 minutes, 5 minutes, whatever, he spent the whole time knowing what was coming, anticipating that hammer that was coming down after his scan.

When I talked to him on the phone and he told me about the seizure my mind went straight to his surgery. I asked him if it could somehow be a complication of it. Even though he answered emphatically no, I still spent the two hour drive to him trying to connect the two things, two last hours of blissful ignorance.

That’s where I’ll wrap up the story for today. Mister in the ED knowing, me driving to Massachusetts not knowing. This all will lead us into the story of “The Hardest Part.” Depending on if and how well you knew my husband, that story may surprise you.

Categories
After

Mister and Ousseau

Welcome back! I promised to not make every post sad, to not make you cry every single time. So I decided to share the stories of how we became “Mister and Ousseau”, how we found our names for each other.

Every time I start to write I’m struck by “oh, first I have to tell them this story or that story.” There’s so many stories intertwined over so many years that sometimes it seems impossible to sort it all out so that nothing is left out and for it all to make sense. I’ve finally come to realize that I could write forever and never tell the whole story and that some of it will never make sense. So here are the two completely separate stories of how we became Mister and Ousseau.

Before Mister and I were married we were together for somewhere around 10 years. I say “together” but it was really on and off again, and again, and again. You get the idea. It was somewhere in these early years that I became Ousseau.

We were at my house watching a movie that I have no doubt was a Netflix DVD so that should date the story by itself. It was “A Good Year” with Russell Crowe. It’s about an investment banker in London who inherits his uncle’s vineyard in Provence. Of course there is the beautiful feisty French woman that he falls in love with but there is also the whole element of him falling in love with the vineyard, the making of the wine, and the whole drastically different lifestyle. It’s the whole idea of turning your life into something amazing yet not at all like you’d ever pictured it.

To say that my husband was a hopeless romantic may surprise you but I’m here to tell you that it’s true. He loved love. He loved being in love, seeing other people in love, and to watch sappy movies about people in love.

This movie was no Oscar winner but it’s sweet and charming. I forced myself to watch it again just the other night. I thought it would be painful. I also was afraid it would be terrible and that I was only remembering it with rose colored glasses. But it was neither. It was just as I’d remembered and I found it comforting, not the knife through the chest that I thought it might be.

At the very end, the closing scene is of the couple in the vineyard garden. She’s making him practice his French by pointing at various things and he responds with the French word. Wine, butterfly, tree, bird. As Russell Crowe is responding with the French word for bird, oiseau, Mister looked at me and asked “do you know why the word oiseau is the perfect French word? Say it” So I did and just as the word came out of my mouth he kissed me and then said “because your lips are in the perfect position for me to kiss you when you say it.” And that was it guys, I would forever be his oiseau. The first time he ever wrote my new name he spelled it wrong, Ousseau and it just stuck like that. I would forever be his Ousseau.

To start the story of Mister we have to go back to talking about the on again, off again part of our story, which all came to a head in the fall of 2008. We were never perfect people. We didn’t have perfect lives. What we did have was an incredible love. But what Mister also had was an intense fear of getting remarried. I can only speak to his feeling by what he shared with me about his feeling about his first marriage. And what he shared was that he was terrified things would turn out the way things did the first time. No one goes into a marriage thinking that they will end up divorced and yet it happens over and over, every day. He saw our relationship as fine the way it was and didn’t want to risk changing that.

I knew that we had something better than that. Imperfect people with imperfect lives that shared one perfect thing, our love. So we fought about it, broke up over it more than once. The last breakup was that fall of 2008. I knew in my heart that this was our last breakup. Things felt different. This was the final stand. But, as every time before, we just couldn’t stay apart. So we saw each other over the holidays, tearfully exchanging gifts and pretending to ourselves that we could be just friends. We were both heartbroken, not our best selves without the other.

Sometime after, maybe late winter or early spring he came to me and just said “fine, let’s do this.” This is the day that he would come to refer to as “the day he finally did something smart.” But he still struggled with it. He couldn’t bring himself to use words like marriage or to say that we were getting married. He would make a joke out of it, act like the words were stuck in his throat as he tried to force them out. One day while attempting to talk about our upcoming nuptials it actually came out as “the marination.” That one stuck and it stuck forever. We would both always refer to our wedding ceremony as the Marination Day. For you all who know our love of food and cooking it will be easy to understand our love of that word that became so special to us as a descriptor of our marriage.

And as for Mister, his name came about in a similar way around the same time. In the weeks leading up to the marination ceremony I would say “let’s practice” meaning let’s practice our new titles for these terrifying new roles as husband and wife, Mr and Mrs. I would say “You’re Mr and I’m..?”, waiting for him to say Mrs. But all he would ever say was Ousseau. “You’re Mister and I’m Ousseau” “I’m Mister and you’re Ousseau.” And that was it, we were Mister and Ousseau forever. I really thinks that who we had been all along. It just took us years and years of stumbling around in all of our imperfection to realize it.

So on June 21, 2009 the marination ceremony of Mister and Ousseau happened on Chipmunk Lane, officiated by a friend and attended only by our children and my two closest friends. We chose that day because it was the summer solstice that year. We wanted the longest possible day to forever celebrate. It was a perfect day in the midst of all of our imperfections. It was also the beginning of the world’s greatest pirate ship, but that is a story for another day.

This one was really tough for me. I guess maybe they all will be. I write, rewrite, and rewrite again. It never seems to be quite right. But, I guess this is a process and that’s going to be part of it. Anyway, I hope you enjoy our sappy story. My goal right now is to have a new post once a week. That seems like an attainable goal for me right now. Maybe as this evolves and I get some of this out the process may become easier for me so the posts can be more frequent. We’ll have to wait and see, wait and see what the universe brings me here in the after. Thanks for reading

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After

Welcome to the after

Well, here we are. Welcome to my blog everyone.

I seriously am assuming that everyone reading this already knows me but here is a quick introduction in case you don’t. I’m Annie; 52 year old mom, grandmother, radiologic technologist who specialized in cardiac Cath lab and electrophysiology for almost 30 years, and my newest descriptor…widow. I need to acknowledge that this is the first time I’ve used that word to describe myself. It’s still hard to wrap my head around, to believe this whole nightmare happened. But yet here I am, in the after.

I was with my husband for over 20 years. He was my best friend, my partner, my soulmate. We worked together, volunteered together, did our best with a blended family together, basically everything together. We built a life that we truly loved. But then the universe decided to correct me on something. You see, I was a firm believer in “you have to go out and make the life you want” and “ you make yourself own happiness in life.” You know, all the motivational and inspirational quotes that people who truly believe that we have some control over things spew. I would post them on social media as I judged people who would complain about their dissatisfaction or unhappiness with their lives.

Then it happened, the universe punched us in the face and stole those lives that we loved so much, had worked so hard for. For me, that punch came in the form of a text that said “ I had a seizure. Am in the ED. Please call.” It was December 10th, 2018. I’ll never forget the date for several reasons. December 9th was my late mom’s birthday and this particular one consisted of a housewarming party for a lovely family friend who was picking up the pieces after a divorce, a birthday party for a granddaughter we were finally getting to know, and a birthday dinner for my son who has been such a rock in my life. It was a day filled with family, friends, so much love and celebration. It was also the last day of the lives that we knew. We had no idea.

Mister (a sweet and funny story I will share at some point) had started a new job at a hospital about 2 hours from our home base about 2 months before. We found a beautiful apartment near his job and had started to settle in to a new routine. He would leave for work early Monday morning. I would stay behind to pack up for our week at the apartment and to give out dog Baxter more time at the house. So the text came on that Monday morning after an attempt to call me. I was outside with Mr.Brown ( don’t you all have several nicknames for your animals?) doing what we all do when we don’t know any better, complaining about something completely meaningless..completely inconsequential. I mean, how dare he take so long to poop. Didn’t he know I had things to do? Why does it have to take him half an hour to find the right spot? But then it finally happened. Yay! The dog pooped so I could head back inside. I picked up my phone and there it was, the text that would change everything forever.

There’s so much to tell all of you about, so much that happened between then and now. So much of it I remember in great detail, too much probably. Other days are a blur. All of them passed in shock. But yet here I am, in the after.

That’s what we started to call it shortly after his diagnosis. When we had to talk about it, the reality of glioblastoma. You can google the word, glioblastoma. You don’t need any formal medical training to see the first thing that will come up is “average survival is 12-18 months.” Statistically speaking 25% of glioblastoma patients survive one year. 5% survive more than 5 years. But then there are the rare unicorns, the less than 1% that get more than 10 years. So that’s what you hope for, pray for, beg the universe for. Please, please universe, please let us be in that less than 1%. Please let us be unicorns.

But as time goes by; time filled with craniotomies, radiation therapy, chemotherapy, immunotherapy, physical and occupational therapy, endless research and doctors appointments, endless hours of driving and crying reality starts to creep in. You start to acknowledge that there will be an after and there are things you need to talk about, decisions that need to be made. So it really started as “the after part.” He or I would say “can we talk about the after part?” Because no one, and I mean no one wants to start a conversation with their partner with “so after you/I die….” No one wants to have any of those conversations with anyone they love. So it made it slightly better, minutely less painful, just a tiny bit easier to start whatever conversation that needed to happen when we knew one of us was going to be here without the other way sooner than we had expected.

So here I am guys, in the after. Still standing most days. I’m a little bung up (please google if not from Maine). I’ve got a hair trigger fight or flight. I feel like I’ve been broken into a million pieces and am starting to slowly glue myself back together. And I now realize that when those pieces are finally back together that the finished project may look nothing like it did before. But that’s okay.

I needed to start writing things down; the stories, the memories, the giant tangle of thoughts that are clogging up my brain now. I’m hoping it will quiet things down up there. Maybe I will some day sleep through the night, get some of my attention span back, maybe finish reading a book or two. At the very least maybe the constant spinning in my head will stop.

I promise not every post will be sad. We shared an amazing life together so I also want to share stories about all of that, all of the wonderful and crazy things we did together. Obviously some will be sad, some will be gut wrenching, and some will contain triggers for some of you. I will try to warn you about triggers but let’s be honest, I won’t always know or be able to do that. Please know that I will try.

That’s it for now. Thanks for reading. Thanks for meeting me here in the after.