This story seeks to increase awareness and understanding of the unique needs of individuals diagnosed with life-changing illness or injury and their families by providing insight into the life of a man as he went through diagnosis and treatment of brain cancer (Glioblastoma Multiforme - or GBM).
Bittersweet is defined in the dictionary as "pleasure tinged with sadness or pain." That's almost an accurate descriptor of how our first trip as an extended family without Dad felt to me, except I'd flip that around: I'd say it was more like sadness and pain tinged with pleasure.
I think we were all a little nervous before we left about how the vacation would go without Dad and with everyone's grief still so raw. Dad LOVED the beach and talked a lot about going there when he first got diagnosed, as part of his Modified Bucket List.
Like we’re all doing in our daily lives, though, we muddled through, trying to still feel lucky and be happy but missing him so badly our hearts literally hurt. Personally, I felt a little guilty, too, being there when he couldn’t be. But I know he would’ve wanted us to go even though he didn’t get to this time, and I realize that it’s just the start of things that will cut me to the bone thinking about how sad and unfair it is that he is missing out.
It helps to be together, though, with the only other people on Earth who love him and miss him as much as I do. And the beach brings a certain peace to me, as I think it did to Dad.
The six grandchildren wrote "I love u, Gramps," in the sand.
My mom brought an item of Dad's clothing for each of us to wear to the beach one night so we could have part of him there with us.
Our group of 15 people walked onto the beach and set down our stuff, and, as we were trying to figure out how we should stand for the photo shoot, we saw a man walking towards us. We asked him if he would take the photo, and he said, “Even better: my wife will; she’s a photographer.” The wife overheard and walked over to our group to organize us so that the lighting was just right. It’s always nice to have a professional show up on the spot. Thanks, Dad!
One of my earliest memories is dancing with my dad during the social hour at one of my dad’s business conventions. From the time my sisters and I were little, he let us take turns standing on top of his feet so that we could each get a chance to be his dancing partner. He was undeniably the life of the party at each of our weddings, cutting a rug and entertaining everyone there until the last note of the last song was played at our receptions.
Throughout his life, Dad never missed out on a chance to actively participate, to set goals for himself, or to live life to its fullest. When I hear the song “I Hope You Dance,” I think about how Dad didn’t need the advice that singer is giving out: he never lost his sense of wonder, never took one single breath for granted, never feared the mountains in the distance, never settled for the path of least resistance, and, most of all, he never, ever sat it out.
I have a cold. I keep thinking about how the last time that I had one, I knew my dad’s days were numbered. I wore a surgical mask around so that I wouldn’t get him sick (sicker?). I guess I was still holding on to the tiny shred of a chance that he might turn things around and get better.
The added benefit of my wearing the mask around him was that he didn’t notice that I was crying. Like a faucet that just couldn’t be turned off. I knew he was miserable, and I was devastated that I couldn’t really help him. Until we called in hospice, things were spinning out of control. He was in pain and anxious, and the doctors didn’t know why he wasn’t getting better. They kept saying, “On paper, he should be better!” and “Let’s consider another rehab stay for him to see if he can get strong enough to tolerate more chemo and then start radiation," even though he couldn't even hold his head up for more than a second or two.
During the ten week period that Dad was sick, when he was done listening, either because he was overwhelmed or he didn’t believe what was being said, he often said “Riiiight…”. Sometimes I would be in the middle of trying to explain the treatment plan to him or to boost his spirits by pointing out a minute improvement, and his eyes would glaze over and he would say “Riiiight…” That was my cue to stop talking and to listen to him (usually he wanted to change the subject completely) or, in many cases, just to sit with him.
When the team of doctors, which at that point included a cardiologist, a neurologist, an infectious disease doctor, a neurosurgeon, and a couple of oncologists, kept throwing out things that didn’t make any sense (“on paper” or otherwise!), I just wanted to say “Riiiight…” A subtle way of calling “B.S.” or at least telling them to QUIT TALKING AND DO SOMETHING!
But there was nothing else to be done, not there in the hospital and certainly not at rehab. So I stood there, crying behind my mask, and said I wanted to take him home. He was getting worse, and I thought maybe the trauma of being in the hospital was contributing. He cringed every time someone walked through the door of his hospital room, thinking it was going to be someone else who was going to poke or prod or even just change his sheets, which was very painful for him too at that point. He said repeatedly that he just wanted to go home, and, after all he had done for us, it was time that we did that for him.
At one point before he left the hospital, Dad did notice that I’d been crying despite the surgical mask on my face. He got a really worried look on his face and said, “What’s wrong?”
“I just hate that you’re so sick and I can’t make you better,” I told him, sobbing. I sat down beside him and put my head down on his chest.
He patted my head and said, “You girls saved my life!” referring to the way my sisters, my mom, and I had lined up the trip for him to see a team of specialists at Duke University to get him into what we thought was the best treatment program in the world. I felt like cold water had been thrown in my face, though, because I knew in my heart that we hadn’t saved him.
“I couldn’t have made it without you,” he said.
“I can’t make it without you,” I wailed. He used what little strength he had left in his arms to lift my head and so that he could look right at me, and then he said, “Yes, you can. Your mother and I raised you to know what you need to do and how to do it, and you will be ok.”
Even now, though, what I am really thinking is “Riiiight…”
My side of the family tries to vacation together once a year, and last week was the first time we took a trip as a group since Dad went on ahead.
Part of the family met at my house the day before we were scheduled to meet in Florida as a big group, and we decided to pack the car that night so that we could hit the road bright and early the next day.
My husband and my mom were in the driveway, trying to figure out how to best mount the car-top carrier that my mom had brought from her house. It had only been used once before, and Mom couldn’t remember the details of which side should be positioned towards the front of the vehicle and how the clasps were supposed to be secured to the luggage rack.
After they had been out there for about 15 minutes, I went outside to check their progress. As soon as I stepped out the door, it occurred to me that every other time we had taken a trip like this, Dad was in on the preparations. “He should be out here, too!” I thought, as my eyes filled with tears.
Dad loved to be in on the action. He loved to “assist” in repairing and renovating, constructing and configuring, fixing and fabricating, even though he was not at all known for his handyman skills.
When I was growing up, it was Mom who hung the pictures and the curtains after every remodeling project or move to a new house. When Dad was faced with a mechanical or a building project, he almost always did one of three things: hired it out, rigged it up, or broke it. He regularly got teased by the rest of the family for doing things like using a Brillo pad to scrub dead bugs off the front bumper of a car (oops!) and was an honors graduate from the School of Duct Tape. I guess I watched him in his efforts a little too often because, until I met my husband, I hung pictures up in my apartment by hammering screws into the walls.
I knew Dad would have wanted us to take this trip. Well, technically he would have wantedto go on it with us, but, since that didn’t work out, he would have wanted us to go and to have a good time. I was determined to honor him by not making this trip a Cry Fest.
As I took a minute to get myself together, I saw how challenging the task of mounting the car-top carrier was, and so I looked on the side of the big box that the carrier came in to see if there were any tips. Nothing.
Mom and I flipped the box upside down to see if there were any written directions inside that might solve our problem, and an instruction pamphlet fell out onto the driveway. Mom picked it up and opened it to see what we should do, and right away we knew Dad was there to help with the preparations for the trip, as usual: stuck to the inside of the installation instructions was a sticky note with hints, in his left-handed chicken-scratch style of writing, of how to most easily mount the carrier to the top of the vehicle. A cheat-sheet he had written, to make things a little easier.
"To open, lift red button, turn left till clicks. Turn back and press button."
Recently I went to visit my dad’s grave for the first time since his funeral. I’ve actually never visited anyone's grave before, except to stand beside it as we laid to rest the remains of another family member.
I’ve heard some people say that it can be peaceful or healing to visit the grave of a loved one. Because it’s the location on this Earth where the last bits of cells of that person are, it seems logical that one would be likely to feel some kind of connection there.
My dad's body - or his ashes, rather - is buried next to the plots of my maternal grandparents. The cemetery is a beautiful place in the country, with big trees and rolling hills. Their headstones are very nice, and they have colorful silk flowers in the grave marker vases.
I vaguely remember meeting with the guy from the funeral home (Mortician? Undertaker? Funeral director? Salesman?) with my mom and my sisters the day after Dad died and being asked what inscription or symbol we wanted on the front of the Dad's tombstone. “How about ‘What the hell just happened?’ ‘Hell, no, this isn’t happening!’ or ‘Cancer sucks!’?” I remember thinking at the time. I was holding on so tightly to the conviction that the night before - and, actually, the entire 75 days before - had all been just a really bad dream, one from which I would awaken and be shaken by but then go on with my Real Life.
Many of the big decisions about the burial had already been made: Dad and Mom had made most of their own “arrangements” (what a freaky term) years in advance, and Dad had said for as long as I can remember that he definitely wanted to be cremated when he died. The three things we had to decide on that terrible day were about the urn, what would go on the tombstone, and what would be written in the obituary.
For the urn we chose a basic wooden box; we thought that Dad would think the vase-type urns were too “girly,” too fancy for his taste, or - as he sometimes termed things - "a waste." We convinced the funeral home guy to let us use his computer and then we somehow found a way to type up the obituary for the newspaper. Once that was done, the decision of the grave marker was all we had left to do there, and, for some reason, it seemed like the most important of the three to me.
We flipped through the “Marker Manual” and, in much the way Dad picked out many of the things he bought for as far back as I can remember, we were able to make the decision because we knew what we wanted when we saw it: a winged foot, which is the symbol of Mercury, the messenger, the Greek god of trade, and a commonly used logo for the sports of track and field and cross-country running.
The day I went back to the cemetery, I stood for a while in front of my dad’s grave and waited. I looked around in search of some kind of Sign. I found myself thinking, “Come on, Dad! Give me something!” Finally, I sat down on the grass in between the plots of my dad and my grandparents and decided I would try to just breathe, just take in the scenery, just sit there and pay my respects to them. A little voice in my head kept butting in and saying, “This is crazy! Dad’s not dead!” but I kept at it anyway.
After about 10 minutes, I decided it was a little crazy for me to be sitting there waiting for something; while the cemetery is a pretty piece of property, it certainly isn’t where I spent any time with my dad or my grandparents, and I didn’t feel any special pull or connection to them there. As I stood up to leave, I felt tears forming in my eyes and then spilling over to fall down my cheeks. I looked around one more time and then started walking towards my car, feeling lost and alone and so, so sad. I don't think the cemetery is a place of peace for me right now; I don't think anywhere really is.
