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.