It was Friday, July 27, 2018 and we were preparing ourselves for our weekend trip to Bloomington, Indiana to visit family and friends. This wasn’t our ordinary trip where we had loose plans to see people but would be generally fun and easy going. This the trip to our hometown to tell Dustin’s mom that he had an unknown giant blob in his beautiful brain. We had a lot of people to see and tell. We knew it would be hard and heavy but we had plan and all would be fine. As the old saying goes, well thought out plans often go awry and awry they went. Overall the trip was pleasant. But breaking the news to Martha was a disaster.
On our drive down, we got a call from the neuro oncologist with an update from tumor board. It was generally agreed that this looked like a low grade glioma on the scans but getting a biopsy and removing it was the next step. Tumor board also agreed that the best approach surgically would be an awake craniotomy. The neuro oncologist had set up an appointment for Dustin to discuss the next steps with a neurosurgeon who specializes in awake craniotomies, has both clinical and research interests in brain tumors, and was someone he’d trust to operate on his own wife. Okay, well that’s that. The neuro oncologist emphasized that it’s not emergent but getting the ball rolling so we can make a timely decision was important. It was urgent, but not emergent. Phew. At least we don’t have to turn around and go back to the city.
We arrive at Caitlin and Nick’s house after a long drive. Dustin cannot drive given the seizures so I did all the driving. Dustin has always been the driver. He prefers to drive and I prefer to be the passenger. This was our first trip where I’d be doing all the driving. Dustin is not a very delightful passenger and has a lot of opinions on my driving. By the time we got there, we were both very excited to not be in the car. I was cranky from driving. Dustin was cranky from being subjected to my driving for several hours. But it was a great arrival and we were excited to see them and what DIY improvements they had been working on in their house.
We start prepping for dinner as we had planned a cookout with Martha to give us an opportunity to break the news. Nick is the master chef of basically everything so he was prepping everything when Martha calls Dustin.
Dustin steps aside so he could talk to his mom but we could hear what he was saying. It was clear that Martha wasn’t going to come and I was fucking pissed. Dustin says to her that it’s okay and hopefully we can see her tomorrow if she’s feeling better. He comes back and rolls his eyes, “well Martha says she’s not feeling well and doesn’t want to come all the way over here. She’s going home and not coming.”
Everyone sighs and rolls their eyes. Typical Martha. She always makes a big deal about “going to the other side of town” and how it’s “such a hassle” and “so far way.” Bloomington isn’t a huge bustling metropolis. Getting to the other side of town takes like 15 minutes in the car. Sure, traffic could get heavy at times and might make the drive an excruciating 20 minutes. Bloomington is a college town so there is a huge influx of people in the fall when all the students return to IU. In the summers, there is a mass exodus of students going away for whatever summer adventures awaited them. It was July and Bloomington was in the sleepy small town mode. Less traffic and bullshit.
Everyone knew this was NOT about Martha not feeling well. We knew she likely felt just fine but was just throwing a fit for some reason. She doesn’t enjoy doing things that are not her idea. She doesn’t enjoy going to someone else’s home. She wants everyone to come to her, on her schedule, and it has to be her idea. It’s all about her. So she was stomping her feet in protest. She was choosing to not see her own son because we weren’t coming to her and it wasn’t her idea. However, Dustin made a keen and reasonable observation – “If she’s in a pissy and foul mood, it would be in our best interest to wait until tomorrow to tell her.” He was absolutely right, telling her when she’s grouchy would make it 100 times worse. But I said, she can’t play this game forever she has to know this weekend. I wasn’t going to leave Bloomington without her knowing.
I couldn’t help but be totally enraged. Martha was throwing her typical pity party. Dustin wanted to tell her this in person. Dustin wanted to tell her straight away once we got into town to give her time to process. To give her the opportunity to see us a second time if she wanted. This woman would often complain that we don’t spend enough time with her on our visits and that we didn’t love her enough to spend the entire weekend with her. Here we were, doing what she would want but because it wasn’t her idea of how it should be, she was behaving like a petulant child. She was choosing to not spend time with her son. What kind of mother does that? I did my best to put my anger aside but that was hard. I mean, Dustin even chose to wear long sleeve shirts so his mom didn’t have to see all the wicked bruises he had from IVs and blood draws. He was so kind and thoughtful in how he wanted her to find out and she wasn’t letting him do this his way.
We decided we’d touch base with her tomorrow and go from there. We’d still have her come over to Caitlin and Nick’s place. That was non-negotiable. Going to Martha’s home wasn’t an option. Her home isn’t welcoming or conducive to having a conversation let alone a difficult conversation. She lives in a nice albeit small two bedroom apartment that she shares with Dustin’s brother Rob. However, the inside is so cluttered, chaotic, and down right filthy. Being totally honest, it is basically a slightly tidier version of what you’d see on the show Hoarders. So much stuff in such a small space that you couldn’t tell what was salvageable, usable stuff or flat out garbage. Martha was always in the process of going through her treasures so it was always out and in heaps that made no sense to anyone but her. Rob wasn’t helpful around the house either and was essentially a tornado creating more chaos and filth anytime he entered the space. Then there was the dog hair and all their excrement. She’s has always had at least one dog in her life and as many as four. These dogs were sweet and lovely dogs but often untrained and poorly mannered. You never felt comfortable taking off your shoes or sitting anywhere because you didn’t know what you’d step into or be sitting on – fresh or dried dog piss and shit were your choices. It was disgusting and always made me physically ill. Going to Martha’s was always an exercise in speed, efficiency, and patience. Get in and out. No lallygagging.
Saturday rolls around and Dustin is texting with his mom. She’s really not feeling like a visit and is just being evasive. Dustin calls her. He says, why don’t you come over for a little bit, we’d love to see you. She is firm. Dustin wants to do right by his mom so he’s asking about later that afternoon and you can tell she wasn’t budging. So I take the phone, and tell her to get her ass over here. It’s not up for discussion. She needs to be here because we have important stuff to talk about.
She was on her way.
It’s funny now, looking back at that phone call. Caitlin and Nick always have a good laugh about it because it was Martha being Martha and Nicole gets really bossy and just rips the phone away and tells her to get her ass here now!!
I was still pissed off by the time she got there. I’m sure it was pretty obvious. But we stuck to our guns and told her. Dustin’s brother Rob came over, so we had to tell the whole story again. But it was done. She knew. I don’t know if she really understood the gravity of it at the time. Afterward we heard that Rob had asked Martha, “Did Dustin just calmly tell us he probably has brain cancer?” So clearly Rob understood.
The rest of the trip was pretty nice. We caught up with old friends from high school and told them what was going on with Dustin. It was exhausting telling everyone over and over again. I don’t think a lot of them really understood the gravity of it. To be fair, Dustin didn’t want to come across as doom and gloom. He didn’t want to worry anyone. He just wanted to be treated normally. I think Dustin succeeded in that goal. However, it was hard for me because I didn’t want people to be oblivious to the gravity of it and it felt like a lot of people were oblivious.
The visit overall wasn’t bad. It was just exhausting both physically and emotionally. We headed back on Sunday because we were both planning on going back to work on Monday. So we needed to get home, do laundry and just relax before starting the new week. We also needed some space to recover from all of this and my driving.
Dustin and I had very different reactions to all of this and it was hard for us to navigate it at first. No doubt both of us were terrified but we had different ways of coping which was hard. You want to be seen, heard, and understood. Neither of us really felt that way when we first started down that road. We eventually found a way to let our feelings co-exist and support each other. But it wasn’t easy.
Beside you in time 