Categories
After

Time

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.

Categories
After

Grief

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.

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.