annieintheafter.com

Hi, guys! Welcome back. Today I wanted to talk about grief. Grief has become not only something that I live with on a day to day basis but also something that I think about quite a bit. I don’t mean that I sit around and think about how sad I am. I mean more like I wonder if I’m doing it right. Am I making progress? Why haven’t I reached all the stages? Why does grief look so different on different people, different circumstances? What do people see when they look at me in my grief? And why does any of this matter?

Back a ways, a few months ago I guess, I really started to question my grief process. Mostly, I think, because I was afraid I would always feel the way I did at the time. So sad without Mister and missing him so much. So I started reading every article I could find about it. Today I’d like to share some things I’ve learned about my grief, about grief in general really, and what I’ve come to call “grey area grief.” A fitting title since the brain cancer ribbon is a grey one.

I found most articles about the stages of grief cite 5 stages; denial, anger, bargaining, depression, and acceptance. Many others cite 7; denial, pain and guilt, anger and bargaining, depression, upward turn, reconstruction, and lastly acceptance and hope. I also found several articles that list 12 stages of grief. Okay, let’s settle down with the additions to the list, people. 5 seems a little stunted to me but the list of 12 seems a little overkill, no pun intended there. The more I read about the stages though, the more I questioned my own grief process. Why did I still feel stuck? Why had I never gone through the anger stage? I mean, for god’s sake, why hadn’t I progressed into anger after being blindsided by this monster that stole so much from us, literally stole “us”? It took a lot of reading, soul searching, and honestly just time for me to realize that caregivers to a terminally ill family member, especially when it’s an illness that causes progressive cognitive decline, get handed the most messed up version of grief, And our grief starts the day that our loved one is diagnosed. It’s like watching the most tragic accident play out in the slowest of motion and you are paralyzed to help. The problem is that it really goes unrecognized, ignored until our loved one is gone.

Once I started to search for articles about grief after caring for a terminally ill loved one specifically all of the things I had read about grief and it’s stages started to make more sense to me, about me really. The Family Care Giver Alliance calls it “anticipatory grief” and “ambiguous loss” Ding, ding, ding! Those terms resonated in my soul! I was finally reading articles about grief that felt closer to mine. It made me realize that I had in fact been through some of the stages long before I was actually a widow. And that some of the stages oozed over into each other in ways I never expected, like specifically the guilt. I’m going to stick with the number system that is traditional used with the steps while also trying to explain the oozing.

Stage 1: Shock and denial

This one is obvious, looking back. The text, the phone conversation, the drive from Maine to Massachusetts, I mean, hell even hearing the words “tumor in my brain;” my mind was still trying to find a way out of this. We had worked with a physician in the past with a benign acoustic neuroma. He lost his sense of taste, had hearing loss, and had terrible headaches after his surgery. At the time, I remembering thinking how terrible this all sounded. But on that day I remember thinking, maybe it’s just that, something benign. That wouldn’t be so bad, right? You can convince yourself of just about anything until you hear the glioblastoma word.

Stage 2: Pain and Guilt

This stage is not so clear cut. Sure, the pain part is. It was punch in the gut after punch in the gut in the beginning. Up until very recently I would have emphatically told you that I had never felt any guilt through all of this. I guess I assumed that meant that the grieving person felt somehow responsible or that they felt guilty for being the survivor. Now I realize that I had guilt the whole time, shame really. Knowing in the back of my mind that this was it, that I was soon going to be without him but feeling ashamed that I felt that way. There’s so much stigma involved with cancer and how it’s viewed in our society. All of this I’ll go into in a separate blog but for today I’m just going to talk about “The Fight.” As soon as someone is diagnosed with cancer the discussion immediately turns to “the battle” or “the fight.” Like if you fight hard enough and keep a positive attitude, everything is going to be fine. I get it, I really do. But the sad reality is that some cancers aren’t winnable. I knew we weren’t going to be “kicking cancer’s ass” or any of the other inspiring battle cries that roll off people’s tongues. That’s how we became #teammoretime. That was our goal, as much time as we could eke out of the universe together, with our family. As thing progressed after his second surgery, it was almost on a daily basis that I would notice changes. I knew what it meant but was also looking for some validation. I wanted someone, one of our healthcare providers I guess, to hear my concerns and say “it’s happening.” I told my kids that I felt like I was the fun sucker, the Debbie downer. I felt like my negativity was somehow speeding along the process. I felt guilty for knowing what was happening which was compounded by the fact that I could not get one single provider to say “yes, this is what you should expect. There’s no turning back now.” Instead, when I would describe scenarios I was met with “huh” most of the time. I felt guilty for finally insisting we move our bed downstairs to the living room knowing that he would never sleep in our bedroom again. I felt guilty for insisting we enlist the help of hospice and palliative care. I felt like I was the one calling the shots, making the decisions that meant it was the end of his life. I know in reality, that was all on the universe but I felt, well I felt guilt at the time. The examples are endless, but the point is that I felt guilty for knowing, for seeing with crystal clear vision and a front row seat what was happening.

Stage 3: Anger and Bargaining

I think my anger was really short lived. I was angry that he went undiagnosed through a carpal tunnel surgery but let’s face it, even if he’d been diagnosed 2 months sooner I would still be in the same boat I’m in now. It’s not like early detection has any impact on glioblastoma outcomes. I had anger and still do toward people that didn’t show up for us. Most of that has turned into pity for people that missed out on spending time with him when he was here. You can’t change other people, make them any better than they are, so it’s their loss really.

I’ve read a lot about people feeling anger or resentment toward seeing other people happy, like people getting married or falling in love. That has definitely never been the case with me. I honestly hope every single person gets to experience a love like we had. It was the absolute best.

As for bargaining, it was really only ever for more time. Which turned into the dreaded double edged sword. Some of the time at the end was too much, too much for him really. He didn’t want to be that way whether he knew it any more or not.

Stage #4: Depression

I’m going to come right out of the gate with my distaste for this word being used as a stage of grief. I’m sad. The whole thing is fucking sad. The whole story is sad. Cancer is sad. Losing a wonderful person that you adored is sad. Watching someone disappear into their own mind is sad. I’m not clinically depressed. I’m sad. I don’t think grief is a time automatically for antidepressants. I’m not saying it never should be but I think as a society we lean way too much on pharmaceutical fixes and not enough on letting people navigate through their grief in their own way, at their on pace, in whatever way works for them. It’s a time to be sad. This is a whole other ball of wax to get into some day but for now, please just recognize that grieving people are sad. Sit with them in their sadness, that’s what we need really. You don’t have to try to fix us or cheer us up. Just sit with us while we’re sad, hand us a tissue, don’t ask what’s wrong, maybe give us a hug. It’s really that simple. Maybe a cookie once in a while, wink wink.

Stages 5, 6, and 7 Upward turn, Reconstruction, Acceptance and Hope

I’m going to bunch all these guys together. These are all the things that start to happen as time goes on. When you’re getting into bed and realize you didn’t cry today. When you start to make doctor appointments for yourself that you’ve been putting off for years because it wasn’t about you for a long time. When you can mention that loved one without crying, maybe even laugh while you’re telling a story about them. All of this is also opportunity for the guilt to creep in and for that feeling that he’s slipping further and further away but I think that’s all part of the process. And I don’t really think of it as reconstructing so much as constructing. I can’t recreate the life I had before but I can create a new one. It’s honestly exhausting to even think about. At 52 years old here I am trying to figure out what I want to do with the rest of my life but here I am, making progress every day.

As for the acceptance and hope, I think I’ve accepted that I will walk with this grief for the rest of my life but I am hopeful that I’m figuring out how to do that. I’m learning how to walk beside it, not get sucked into it, to not try to carry it, acknowledge that it’s there and always will be, and hope that grief and I can learn to live together.

Thanks for listening again. I appreciate all the support. Much love.

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.

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.

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.

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

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.