In recent conversations, I’ve heard people describe feeling insulted or annoyed or even angry by comments made by other people. Comments include things like “You look great” or “You don’t even look sick” or “Don’t worry. Everything will be OK” or “I know someone who had that and lived a long, healthy life”. We all know that people are trying to be helpful with these comments. Sometimes people are projecting their own hopes and fears. I honestly believe that there is no right thing to say to someone and so that can make everything seem like the wrong thing. It is clear that people have the best of intentions. I give everyone the benefit of the doubt and do not read into any comments, but that may be difficult for others. Food for thought for all of us, even for those of us who have an illness and are talking to someone else with an illness. We don’t necessarily know someone’s diagnosis or prognosis or mental or physical state and we should be aware that we probably know a lot less than we think we do about what that person is experiencing.
I’ve been asked a couple times what it really is like looking through my eyes now, with such a large blind spot on the left side. As a reminder, I have almost no bottom left view at all, very little top left periphery and am even missing some of my central left side as well. There is a picture of my visual field test results in a previous blog post. I figured I would try to explain it as best I can.
First, when I am looking straight, I see an entire visual field just like most people. In fact, if I am stationary and looking at things that don’t have writing on them, I generally don’t even notice that my eyes are any different. Where I have the blind spot, it is not a field of black or a field of white emptiness. I don’t know what I am not seeing until it comes into my active field of view because I have turned my head. It is exactly the same concept as the blind spots you have when driving vehicles. I just simply don’t see whatever is in that area of my visual field OR my brain is filling in what it expects to be there.
I do still have some kaleidoscopic vision, in which my left eye has sort of flashes of light. I believe this is because I do have some bits of the periphery getting through and the periphery is most sensitive to motion, so if something moves through the field, it causes me to see some light and dark grays that appear to flash for a second or two. So I do “see” some things to the left under the right circumstances.
Finally, the brain surgery, radiation and chemo also have slowed down my visual and cognitive processing so I don’t take in all of the stimuli in the visual field even when it is in my field of view that is working. This is why it is easy for me to get overwhelmed…I simply cannot process a lot of visual information quickly anymore. In fact, I have wondered whether this is in any way similar to disorders that impact one’s ability to perceive and interpret their surroundings. One major difference of course would be that I’m aware of all of this.
It would be great if I could take a picture of what I see and show it. Alas.
I’m back. About to start my third round of chemo and turn 40. Woohoo.
Yesterday was somewhat of a bummer day unexpectedly. My chemo was pushed back a week after I accidentally took too much and so Mom and I took advantage of a week of me feeling good. We spend a couple days in NYC. Chihuly at the Botanical Gardens then the Guggenheim. Unfortunately, I couldn’t handle the Guggenheim. It was too overwhelming for me. I couldn’t look at the artwork to the right and walk around to the left because I can’t see to the left. It was a little easier once we went all the way to the top and came down because I could just hold onto the railing with my right hand and look to the left, but it really reminded me of the visual deficit and I was bummed that I couldn’t enjoy the museum. I think it was the first time I really got upset about some ability that I’ve lost. Bummer for sure.
I also learned that sitting in a car driving around the city was extremely difficult for me. I got really anxious. There was just so much going on all around me and I can’t process it all and it was not fun for me at all. Also a bummer. It is just way too easy for me to get overwhelmed by things that are very busy and that are unusual or out of the ordinary for me. I suspect a combination of the eyes and the slowed cognitive processing.
My eyes do continue to amuse me though. The other day I thought that people were saying Einstein was exposed as a sexual predator. My thought was, Really?!? Then I realized I didn’t see the W because it was all the way to the left and in my blind spot. Einstein is still good as far as I know.
My time off from treatment has been relaxing. I like feeling the drugs leaving my system and my brain starting to slowly return to its old self. I definitely mean SLOWLY, but I still like knowing it is happening bit by bit. I remember talking about coming out the other end of this with superpowers. As I read all about the brain and neuroplasticity and all the things I can do myself to improve my brain functioning, the idea is not really so far fetched at all. I just need to keep my brain active and force it to continue building new connections. The research suggests that being exposed to novel stimuli is a great way to keep the brain on its toes, so to speak. Exercise, especially aerobic exercise, also appears to be a wonder drug for the brain. Now I need to figure out how I can exercise my visual processing system to either more efficiently handle incoming stimuli and/or to start compensating for my left side blindness. I welcome thoughts or suggestions. I am also curious about the impact of glasses in a couple weeks. Fashion and function! And maybe X-Ray vision?!?
As I’m in my month off of treatment, I have plenty of time to think about anything and everything. Today’s thoughts were about the role of technology in my journey with A-A-Ron. This should not be surprising to anyone who knows that I’m a human factors engineer…I can’t turn off my focus on technology and the design of the world around me. So here are some of the ways that technology has been part of this journey:
- I took an Uber to the emergency room when I went to the hospital. I had to Google where the closest hospital was and then called an Uber to take me there because I knew I was in no condition to drive.
- I had the CT scan that first identified the large mass and ruled out a stroke and the MRI that gave us further clarification on A-A-Ron. Both of those were first time interesting experiences for me and it is clear that the design of those is on the data and not the user experience of the patient at all.
- The picture that is the default for my blog with the rainbow pictures of my brain is an actual photo of the technology in use during my surgery. I specifically requested something and that was a cell phone photo that someone took and sent to me. You can see A-A-Ron, plus the thing stuck in my head to suck him out. It’s pretty fascinating to look at, and someone has even suggested if you look closely you can see the profile of a face in A-A-Ron.
- I actually joined Facebook after my surgery, probably mainly because I was so high on steroids. I have since appreciated reconnecting with a few people I had lost touch with and using it to post my blog…but also see that I haven’t been missing all that much all these years not on it.
- My attempts to use the accessibility features of Google, my Samsung phone, my Samsung tablet, and Facebook were extremely frustrating given that the whole point is they are supposed to help people with limited abilities. Let me say that I was extremely disappointed in the functionality available to me and definitely plan to focus some of my efforts in that area in the future.
- I have come to greatly appreciate the simple features on my phone, like the alarms, to help me with medication reminders.
- Mom learned of the value of GoogleMaps on her phone and her life is completely changed now.
- Clearly the radiation machines were a huge part of my treatment. Interestingly, there were multiple times that the machines were down, for one reason or another. Software glitches. There was even a rumor that someone hacked into them at one point…which honestly, how sick is that? Their own purpose is to treat people with cancer…that’s just inexcusable.
I have spent some time thinking about what else might have helped me through this process or what might me more now as I continue with this process. This is, of course, where I will be reaching out to my colleagues and in some cases already have. It’s one thing to study people in various situations and empathize and it’s another altogether to be immersed into a crazy A-A-Ron experience and realize that empathy can only get you so far. So many possibilities to improve the experiences of people who are dealing with unexpected life events!
John McCain’s diagnosis has me thinking again about the symptoms that I experienced prior to my own diagnosis and how nobody thought “brain tumor!” at all during that year of weird stuff happening to me. His diagnosis puts his wacky James Comey line of questioning into perspective now, don’t you think? His brain may not have been his normal brain that day at all…
Over the course of almost a year, I experienced some odd things that I just didn’t know how to interpret. Now, of course, I know that my “interpretation” skills were off because my brain was off…but to give you an idea, here are some things that I was dealing with:
- I had plantar fasciitis that moved from my right foot to my left foot and then turned into a weird restless leg syndrome kind of feeling (all of this has completely disappeared since my surgery)
- I had weeks long periods of insomnia and loss of appetite for the first time in my entire life.
- I had these weird hot flash things that I attributed to my diet in some way
- I lost my parallel parking skills completely and even had trouble pulling into normal parking spots head on, sometimes having to correct myself up to 3 times
- I had a couple hallucinatory experiences that I attributed to something I ate or drank.
- I could no longer watch TV or movies that I had in the past; I would watch 10-15 minutes and just not be interested. The only things I could watch were Hallmark movies. I thought I was just getting soft in my old age.
There are probably other things, but as you can see, these are just odd things that don’t make much sense and that I certainly didn’t even relate to each other. I went to multiple doctors, one at a holistic women’s center that did bloodwork and even a stomach culture and everything came back fairly normal. Dehydration. Low vitamin D. But nothing that directed them to consider sending me for an MRI. I have actually forwarded my medical records back to those doctors in hopes that they can learn from what they didn’t catch with me. One can hope.
Recent events certainly have me thinking more about health and how things are connected within our bodies and how we know when something is off, even if we don’t know why it is off. Listen to your body. Take care of it the best you can. I certainly plan to.
Today marks the start of my last week of radiation. Next Monday I will ring the ship’s bell that sits in the radiation waiting room for people to ring on their last day. Everyone claps and then everyone moves on. I don’t have a particular need to ring the bell, but I’ll carry on with the tradition as I do expect it is the end of my radiation for good. Although I have the full 12 months of chemo to come, this particular chapter is coming to an end.
This has me thinking a lot lately about what I have control over in my life. It’s an interesting thing to be forced to step back from everything you normally do and be given the chance to just reflect. I find that I feel I have much more control over my life than I had really given myself credit for. I don’t plan to let A-A-Ron grow back. I plan to control his remains with a healthy lifestyle of good nutrition and exercise based on all the scientific evidence out there that proves I can. I plan to rehabilitate my brain to the best of my ability. I plan to be healthier coming out the other end of this entire experience. I see no reason why I cannot be successful in any of these plans. I can think of no greater priority in my life than my own health at this point…and I believe that taking care of myself will make all other parts of my life better in general.
While I don’t recommend growing a brain tumor in order to step back and take stock on your priorities, I do recommend taking the time to think about whether you are doing the things that make you happy or just going through the motions of each day and watching life pass you by…