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…
I finally got to see the nuero-opthamologist and it was quite a fascinating experience. I’ve been wondering what my actual deficit is because sometimes I think I can see certain things and other times not at all. For instance I can’t see my left hand if I just bend my arm at the elbow and hold it up. It turns out that I didn’t lose the ENTIRE left periphery, though as you can see from the picture, quite a bit of it. What I did lose though, is essentially the lower left quadrant of BOTH eyes, which I hadn’t realized at all. All of the black areas in the chart are where I have a visual deficit now, including that interesting spot on the right side of the right eye. I’ll have to now revisit my brain book and the visual processing path to further investigate the crossing of the optic nerves and the optic chiasm and such.
One very interesting thing we learned is that each state has different rules about driving, specifically some require a visual screen test like this one whereas others do not. So LEGALLY I would not be able to drive in Virginia any longer, but New Jersey does not have the requirement so I could still legally drive there. Think about that for a second! Do you know what the law is in your own state?
I am definitely not driving anytime soon, though, if ever again. My blind area aside, I would be much more concerned with my reaction times, given my slower processing of visual information overall. The doc was pleasantly surprised to hear that I have pulled myself from driving, as clearly the opposite is the norm, in terms of people driving when they really shouldn’t be.
Bottom line overall is that the loss seen here is essentially permanent. I will be getting glasses to correct the eyesight in general once I finish the radiation, my brain has settled, and I can get a useful prescription. I see my future non-driving life as an adjustment, but not much of one at all given the public transportation in the DC Metro area anyway and the self-driving cars coming anyway.
I the most amusing part of it is that because I’m left handed, the most natural place for me to put stuff and look is directly in the place where I cannot see anymore. I guess it is time for me to become a right handed person and join the majority of the world…good thing I’m fairly ambidextrous already. I just have to laugh at the circumstances. things could clearly be worse. I’m happy to start getting some data to work with. 🙂
I finally got myself a copy of the post-surgery MRI. So here are the two next two each other. The original A-A-Ron is on the left. On the right is an MRI that I had about two months after the craniotomy. It is clearly not a one-for-one of just empty space. You can see a small black cavity that still exists, but otherwise my brain has actually expanded back into the space it should have been occupying in the first place. The saggy neck on the left has clearly gone away. There are probably other interesting things that my eyes really can’t see at the moment…but it certainly fascinating to just look at the images side by side. The brain and modern medicine are miraculous.
The steroids have me back up in the middle of the night and this morning I started running through a list of human factors issues we’ve dealt with during this ordeal. As I said before, I’ve seen lots of things from the outside in over the years doing user research. Living IN them in a whole different experience. Here are a few fun ones since we’ve been here in Philly doing the radiation and chemo:
- I swear the town we’re staying in has mixed up all the traffic signs to mess with me. The regular green and white street signs are gold and blue. There are hospital signs that are yellow and black like deer crossing signs. There are also red and white hospital signs. I have yet to see the standard blue and white H signs. My wonky eyes already have difficult processing, so this just adds to the amusement.
- I know that Enterprise software systems rarely talk to each other and share data. We’ve experienced this multiple times over. The healthcare part of insurance and the pharmacy part of insurance have given us the run around multiple times because of miscommunication between what the doctor is prescribing, which pharmacy is dispensing it, how many pills are dispensed, when we are allowed a refill, etc. I have a pharmacy support person and a healthcare support person, both of whom we’ve had to call on multiple times to sort through the various prescriptions and treatments.
- At a single doctor’s office, it turns out that even though you have an appointment for labs and the doctor each week, there are multiple sign in systems and the lab can only call you if you are signed into their system but the front desk doesn’t necessarily know this, so the lab people have to wander around looking to see if they can grab the patient prior to the doctor appointment. Ah, the reality of workarounds. This, of course, has resulted in us and probably man others just sitting around waiting for no real reason.
- Also, we get these printed sheets of all my appointments that are completely useless. They are many, many pages and trying to actually find the time of my appointment in them is just silly. The nurses printing them out just shake their heads and smile because they feel our pain.
- I’ve learned medication management is a nightmare, especially when you’re on 6 different medications, some requiring food, some requiring an empty stomach and some based on some other parameters. It is hard enough for Mom and I, so I can only imagine an aging couple who are working with both of their medications at once.
I certainly have a much better appreciation for all of this, even though none of it is surprising to me. Plus, we’ve only got 2 and a half weeks of radiation and then most of these issues will go away altogether anyway. 🙂
I’ve been amusing myself with making lists of things that are probably out of my future career or hobby options. For instance, it is unlikely I will be judging any graffiti contests, probably not becoming an uber driver, and professional Where’s Waldo finder seems to be out. I’m probably not going to edit action movies or monitor security cameras. Crossword puzzles aren’t so easy anymore. Sewing/knitting/crocheting or anything of that nature is not likely. Pretty much anything that requires split second reaction times or attention to fine detail is probably out. This just forces me to be a little more creative in considering my options. Things that don’t necessarily have strict time limits. Things that are perhaps music or art related, though I’ve never really thought of myself as creative in that sense. Guess we’ll have to see. Perhaps A-A-Ron was suppressing my Picasso or Beethoven skills all along. I am not holding my breath on that, but I’m willing to test the waters. Worst thing that can happen is I try and realize I’m as terrible as I thought I was.
And of course, the neuro-opthamologist could tell me this week that my vision will be back to normal before I know it and this will all be moot. Who knows!
In the meantime, I’m taking suggestions if anyone has any for other activities.