Dustin’s surgery was officially scheduled. His surgery would be the first case on Friday, August 3rd, 2018. The week leading up to Friday was a lot of “hurry up and wait” – hurry up and do the fMRI, wait, hurry up and do the neuropsych testing, wait, keep monitoring for seizures, wait. The neurosurgeon, Matt, came to talk to us every day explaining what Dustin could expect on his end and what I could expect on my end.
Waiting is dreadful as it gives your mind a whole lot of time to sit and spin on all the possibilities. Would Dustin make it through surgery? Would he have significant deficits? What would his recovery look like? What if it isn’t cancer? What if it is cancer? When can he go back to work? When can I go back to work? For Dustin, it was a lot of him just being really freaked out by the idea of people poking around in his brain while he’s awake.
Dustin and I discussed what he wanted to do about telling people about this hospitalization. He’s such a private person, doesn’t like a lot of attention, and doesn’t want to worry anyone. Dustin decided that it was best to not tell anyone that he was in the hospital or had a surgery date. He was so exhausted and his cognitive functioning wasn’t great. Leading up to the surgery he was initially having 10+ seizures an hour. He was started on a new anticonvulsant medication was added and adjusted. Over the week, his seizures were reduced to about 2-3 seizures an hour prior to going into surgery. Unfortunately, he wasn’t able to reach a seizure free state prior to going into surgery but at least they were significantly reduced.
The small bursts of seizures really short circuited Dustin’s brain which made him struggle cognitively and made him physically very tired. He slept a lot during this time. Additionally, when adding and increasing seizure medications it isn’t uncommon that patients feel super fatigued as they acclimate to the medication. Dustin had lots of reasons to be totally exhausted and cognitively impaired. He knew he wasn’t quite operating at his best and didn’t want people to see that. He didn’t want people to worry. He didn’t want to have to pretend to be okay. He didn’t want to have to explain to everyone over and over again what was going on and why. He didn’t have the energy or desire to placate people, ease their worries, or talk about his condition. He was scared enough as it was and didn’t want to talk about it over and over again.
We agreed to keep it quiet and only tell people if it were necessary. Obviously, his employer knew since he wasn’t in the office. However, friends and family weren’t to be told unless absolutely necessary. It was especially important to not tell his mother. Dustin was terrified if she found out that she would come up to the hospital. While Dustin loves his mother, he also knows that her behavior during stressful times is often unpredictable and usually inappropriate. He was terrified that Martha would come up and make a scene and embarrass him and/or me and that it would affect his care or recovery. He was worried that she would treat him like a petulant child, try to lay in bed with him, or try to take over his care. Which to be fair, that isn’t an unreasonable concern as Martha tends to make everything about her. She would have to be consoled and neither of us had the capacity or desire to console her. She would have to be the care taker. She would have to be the boss. She would be the one who knows better than everyone else. Dustin needed to have as much calm and peace as he could have going into the surgery and for his recovery. He knew Martha would never allow him that peace and calm if she knew. She causes so much chaos and stress to everyone. Dustin also knew that I couldn’t handle her either. But he also didn’t want to worry her, he wanted to spare her devastation as much as possible.
I think what is sad is that it would have been nice to have the support. However, Dustin ultimately knew that Martha wasn’t capable of providing support and feared what behavior she’d put on display. To put in perspective exactly how worried he was about her showing up and acting a fool, that we ended up putting a visitor restriction just in case she found out and showed up. We wouldn’t tell her, but if she some how found out it was just easier to prevent that possibility all together. We’d tell her once it was done and over with and deal with the repercussions later.
Friday morning arrived, and I helped Dustin with washing up with the special antimicrobial soap. After he was cleaned up, we’d wait for the transporters to come take him to the pre-op area where they would do all the things to prepare him for the operation. They let me go with him to the pre-op area which was great. Both of us found a lot of comfort just being in each others presence.
Even though the surgery was to be awake, he still had an anesthesia team. They described themselves as “cruise ship directors” making sure he was comfortable throughout the ride. The anesthesiologist would inject a nerve block so he wouldn’t feel anything while they were cutting his scalp and bone. He’d be a little drowsy during this portion since he didn’t need to be awake for that. It’s a fine balance because you want him to be awake enough for the parts he needs to be awake for without being totally high as a kite.
The anesthesiologist also explained that the majority of the time his hands will be tied down, so if he has an itch to let them know and they will scratch it for them.
Remember Dustin’s not firing on all cylinders and has no filter. So Dustin looks at me, wide eyed and slightly amused and giggles. Then he blurts out, “In the past, anesthesia has made my butthole itch. Are you actually going to scratch my asshole if it gets itchy?!”
At this point I’m literally dying laughing and the team was a little surprised and shocked at the question. The anesthesiologist replied, “well hopefully you won’t have an itchy butthole but we’ll cross that bridge if it happens.”
Matt, the neurosurgeon, comes in and Dustin promptly tells him that the anesthesiologist would scratch his butthole if it got itchy. I had to explain the back story on that which seemed to amuse everyone. Matt reminded Dustin of the plan and what he could expect.
- There would be a lot of people in the room but it’s well organized so it doesn’t feel chaotic
- Your brain doesn’t have pain receptors so you won’t feel him digging around
- You’ll have a nerve block on the scalp and will be slightly drowsy during the opening of the brain
- When they map the brain he will take a little wand and zap areas to evaluate the response. These ares will be marked with a little piece of paper so they know what it is
- Someone will be there monitoring for seizures. If he has a seizure there are a few different things they can do, namely splash the brain with cold water which will stop it. If they have to, they can always convert to an asleep procedure too
- Since he’s also participating in a study, he will have a few other questions to ask during the surgery and he can opt out at any time
- They will take out a piece of the tumor for the pathologist to read. It usually takes about 15 minutes for the pathologist to analyze and confirm it is a tumor
- If it is a tumor, they will remove as much as they can without damaging eloquent areas
- The surgery will be roughly 8 hrs, afterwards he’ll go to the neuro ICU to recover.
- There will be some brain swelling but he will be on steroids for a while to reduce swelling which will eventually be tapered off.
- If all goes well he can go home in a couple of days
- He might have some issues with word finding and/or swallowing after surgery but that should only be temporary
On my end, I’d check into the surgical waiting area where I could expect to get updates every couple of hours.
We exchanged I love you’s and a quick kiss and he was rolled to the operating room.
I remember before checking into the surgical waiting area that I went to get a coffee from the Starbucks on the first floor. I’d need to be caffeinated as I didn’t sleep well.
Once I checked in with the staff in the surgical waiting, I scoped out the area for the best nook I could find. There weren’t a lot of people there yet so I had lots of choices. I ended up choosing a spot by a window in the corner. This area was a bit more secluded and quiet. I claimed the area and unpacked my backpack a little to mark my space.
I passed the time by reading and browsing the internet on my phone. I’d stand, stretch, reposition. Time seemed to stand still. I remember the first update that he was in the room and doing well and they would open soon. I remember the next update that they were still working on removing the mass. I remember this because nobody had actually confirmed that the pathologist said it was a tumor. So I asked, “so that means it’s a tumor and it’s cancer?” The nurse on the other end was quiet and a bit annoyed, “Yes, it was confirmed to be a tumor.” My response….was actually, “WOMP WOMP. Tell Dustin I love him.”
I found that reading was quite helpful during the waiting. It kept me from spinning in my own thoughts. I ended up reading a book called High Rise Stories: Voices From Chicago Public Housing by Audrey Petty. It’s a fascinating compilation of stories from former residents of Chicago Public Housing projects. Many of these buildings have since been demolished. There were so many stories of people whose voices are often ignored and dismissed. Not all of the accounts were about the negative aspects of poverty, gang violence, displacement, and gentrification. There were also people who expressed stories of community, strength, and support. It was such an immersive read.
My friend Shannon stopped by towards the tail end of the surgery to check on me. She was actually present when Matt came to find me to update me after the surgery was completed. I remember being so grateful it was done and so grateful for Matt. He said Dustin did really well and he doesn’t expect any deficits. I’d be able to see him in about an hour. I cried in both relief and sadness. Dustin had brain cancer and it would be a couple of weeks before we knew all the details. But fuck, this sucks…Dustin has brain cancer.
Beside you in time 