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.