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Nolan's Healthful Journey through Stage 2 Brain Cancer
Join us for an interview with Nolan and discover how he has been able to manage through his journey after diagnosis with Stage 2 brain cancer. This is Nolan’s Healthful Story. Please note that the video may only play in landscape mode on a mobile phone.
Navigate Nolan'sJourney with Stage 2 Brain Cancer
0:21 My name is Nolan. I work in biotech. I grew up in Minnesota and Hong Kong
1:27 Getting closer to what you as a patient go through is important for providers to enhance empathy for each other as we help each other through for systems as they think about ways to serve patients so it’s all for the good so to speak in in the ecosystem here you said you found out you had a tumor last year in the midst of covid19 certainly the pandemic is here how did you find out
1:58 It actually it actually happened during work at a [Zoom] meeting
2:04 I was wearing my big Bose headphones and I felt like I had a lot of feedback within my headphones. It seemed like there were three or four overlapping songs playing
2:21 It basically stopped me for five to ten seconds where I wouldn’t be able to grasp any part of one song whether it was like the chorus or the melody and I had to stop in the middle of speaking during a meeting where I just couldn’t move for a second and it was just very distracting
2:43 It happened twice within about a week when I was wearing the headphones so naturally I thought hey you know what could this be so I did a little bit of googling a little searching at that point and the only thing that it related to was auditory hallucinations which is attributed to PTSD
3:33 So it just went away for about three months and it came back in the summer and I noticed, hey I’m not wearing headphones this time something again let’s let me call my physician here
3:48 So at that point I basically say hey I gotta get an MRI there’s something going on with my brain. I don’t know what could happen and they took an MRI it was actually about a week before I started a new job
4:11 The physician came back the neurosurgeon actually came down and said you got you have a tumor you have something in your brain and they didn’t say tumor at that point they said a mass and that was kind of a we don’t know what it is unless we look at it so it was located at my left temporal lobe near the Wernicke area of the brain which governs speech – it is the area that allows you to pull words out of your brain to translate your thoughts into communication
4:51 The surgeon said I think it’s a glioma or an astrocytoma but the only way to find that out will be to do an awake craniotomy and the reason to they would do an awake craniotomy was because where the location was again was my work my speech part of the brain
6:29 So it was purely the auditory hallucinations and what it turned out to be actually was minor seizures that were pushing down on that part of my brain so I was seizing those five to ten seconds that it was happening so some people won’t notice what is happening because it can present in a number of different ways
13:32 One of a friend of ours from college said you’re an N of one. Everything else is these studies can’t attribute your entire life so don’t read too much in statistics. Your journey is your own. The second part was just give yourself time
15:42 You can’t really prepare to being awake while someone’s behind you cutting into your head. It’s very again surreal trying to carry on a conversation with the nurse in front of you asking you about well tell me about a book or tell me about your friends
17:26 I walked in and noticed that my brain is on the screen. There’s a 3D print of it
18:21 There were certainly times that they would probe and ask a question and I would not be able to answer correctly or remember you know well say where are you right now
19:49 I wanted to leave almost immediately I did not want to sit within the hospital so I got out as quickly as possible. I knew I had to go through recovery but I stayed in bed for about two days so I left the hospital the day after I got back to our home stayed for about two days of recovery and then the next six months I was regaining my communication capabilities and my ability to retrieve words so that was the biggest part for me is that it was very difficult for me to think of a story or be able to communicate. I was trying to describe things happening quickly. I would say that car moved quickly how quickly do you think they’re going that was very quick where otherwise I would try and use different adjectives synonyms – you know well that was fast or that was quick or that was swift so my communication was very very limited
20:59 I found if I was speaking extremely quickly I would lose pronouns where he’s become she’s or she’s become they or they becomes he’s and it was without rhyme or reason. One thing that is continual is where I think I’m still going through recovery I can’t remember the words of songs as they’re coming through. So we were at a friend’s birthday and people were singing happy birthday, a song that I’ve probably heard a thousand times
at this point
21:47 I was not able to retrieve the words fast enough to actually sing the song
22:26 The doctors said that they thought they got a full resection which would be a full removal of the tumor and any parts that would be remaining within the section of my brain
23:00 They did say that it would be six months to a year before I would be fully recovered. They said six weeks until I felt good enough to really be competent at what I previously was doing so to work or you know activities back home
23:20 So I did experience similar time frames that they offered me
24:24 My job was very very accommodating. For a month and a half afterwards there were times that my brain just got very tired and that was due to you know the inflammation and some of the damage that that had occurred. It was drilling and stripping parts of my gray matter in order to remove this this tumor so it was definitely swelling so my brain was definitely going through recovery and I was using that a little bit as a marker for my recovery is how did work feel like this week how did it feel the week after and the week after so that was where I am at. So I’ve been successfully in my opinion working well for probably five months now after that surgery
26:05 The first week after the surgery when I was trying to work, I probably worked four to five hours that week and what I found was it took me hours to write emails or to respond to somebody where I would see something that I needed to respond provide input on and I would try and write an email and it would take me an hour, take me two hours and I would respond I would stop I would look at it and I could just tell my brain was saying this is too much take a minute just sign off for today and so that was kind of my indication where after I had done work for a couple of hours I would notice that all of my processes or processing within my brain would just stop down and it would say go take a nap you’re done here this is this is too much and that’s basically my indication that was a good baseline of the next few weeks where I would know if I noticed my processes were slowing I would start stopping and I would either cancel or move meetings and I would say I’m not going to be able to add my best here and I’m not going to be able to provide any value to any of these conversations so I’m going to take the time and give myself some time to really develop it and recover here so back to the in office so I didn’t go back into the office for probably three months afterwards. I did have this giant scar on my head and when I did go back I wasn’t able to get a haircut because it was still sensitive it was still so I basically wore hats for still wearing one for about four or five months after the surgery I did get a haircut eventually but just started getting used to wearing a hat because I didn’t want to have this goofy haircut going into to the office so work from home make makes it a bit easier because you know I guess folks will only see the front of your head right with the with the way the Zoom and certainly the hat helped when you did make it back into the office
28:24 Did everyone kind of know that that’s why you were wearing a hat is that sort of it became a non-issue or were there conversations that occurred because of it? I think I probably let 10 people in my company that I had surgery now having said that I did inform everyone recently as an announcement to the dinner that we’re hosting in May and you know personally my thought behind that was I didn’t want people to treat me differently after it happened. I wanted to and especially as a new person or a new co-worker I wanted people to judge me based off of my capability and not to judge me based off of my disease
29:58 I think it’s important to communicate when you’re ready of course because there’s a large group of like experienced people out there
One of a friend of ours from college said you're an N of one. Everything else is these studies can't attribute your entire life so don't read too much in statistics. Your journey is your own.
Nolan
30:57 When I was first received this diagnosis I was pissed
31:10 I think frankly I don’t smoke. I don’t do drugs. I go to the gym five to six times a week so I was extremely mad because I felt like my body had kind of given up on me or had had failed me there
33:39 I’m probably at 95 percent at this point. I think that I’m very lucky and it sounds weird, but I’m lucky that seven months after surgery I’m back to 95 at this point
36:29 When we experience these things and it drives us with a bit of a sense of urgency to do something that’s when the change can happen as you mentioned, it has been 40 or 50 years since something new has come to patients. These stories will hopefully spark that awareness that appreciation that there is a need and hopefully it’ll inspire someone to do something and I think that’s all we can hope for and you know maybe it doesn’t help us ourselves but it helps others and that’s okay too right
37:44 I think there’s a couple things that we’ve talked about today but one is listen to your body. If something feels wrong it’s okay to ask and it’s okay to talk to your doctor and if you want a second opinion it’s okay to do that. I think two is be kind to yourself especially as you’re recovering and moving through things this is it’s important to take the time for yourself and not like me just trying to go ahead rushing through and then the last one is that everyone is an N of themselves an N of one. Statistics are good for getting information but they aren’t defining. They do not define the person and the person is not a lost cause right from the beginning. So everyone has their own journey and their own fight
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