Continuing adventures of a brain tumor landlord

I’ve been pushing myself out of my comfort zone lately. Some adventures of late and musings related to those:

  • Indoor rock climbing was fun, even if it was difficult for my brain to wrap itself around belaying. I decided I didn’t feel comfortable being responsible for someone else’s safety. Making sure that everything is secured properly so that the other person will not get hurt was too much effort for my brain. I tend to second guess things over and over and over and so while I enjoyed the climbing part, I felt bad that I couldn’t belay others.
  • Indoor adventure park was also awesome. Similarly, the actual obstacles and courses were lots of fun; yet learning to use the safety strap, which needed to be transferred to each new obstacle in a specific way, required much more effort for me than anyone else. I had to be shown multiple times and multiple ways in order for it to finally click for my brain. Once it did I was fine, but it does take longer than it used to and than for others.
  • For both of these activities, there were lasting impacts in the form of serious bruising all over my thighs from the safety harnesses. For those of you who aren’t aware, one of the side effects of chemo is that I bruise super easily and it is long lasting. Right now I look like I got run over by a truck across my thighs. It’s quite a work of art.
  • I’ve also taken two cooking classes: back country cooking and anti-cancer cooking. Sadly, during both of these classes, when it got to the cooking portion, I didn’t participate much. During the outdoor cooking class, I got overwhelmed and also didn’t feel comfortable working with the stoves. During the anti-cancer cooking class, I got so fatigued that I literally laid down on a yoga mat in the corner of the room and took a nap while everyone else cooked. Luckily I was at a cancer center where that kind of thing is not only common, but knowing your limits and taking care of yourself is encouraged.
  • Each of these activities was new for me and presented some new obstacles for me to overcome. Each was also a great learning experience, a step out of my comfort zone, a chance to socialize with others, and a chance to live my life even as someone who has limitations.
  • Next on my list: riding a bike again, go carting, maybe a dance class. Maybe I’ll also get back to to the juggling idea!
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Making annoying things fun

The other day I realized that I had successfully made something that should be annoying fun instead. Nobody likes getting spam phone calls. I am one of those people who doesn’t answer the phone when I don’t know who is calling. If it is important, they’ll leave a message and I can call back or they will text me. A few months back, I changed my ringtone to a song that instantly puts a smile on my face and makes me feel good when I hear it. Now, every time my phone rings, it makes me smile no matter who is calling. And when it is a number I don’t recognize, I just let it “ring” so I can listen to the song for longer. Thus, spam phone calls are no longer annoying because they actually bring me a little joy each time. I want to find ways to create this same experience with other annoyances in life. I don’t have any other ideas, but I am sure some will present themselves.  Feel free to steal this idea for your ring tone…it totally works if you find that right song!

This morning’s visual a-ha moment

This morning’s visual a-ha moment

I have tried explaining my visual deficit in multiple blogs; however, this morning I had a realization that I’m not aware of all the ways I experience vision. I woke up this morning and looked at the clock across the room. The first number was an 8. Wait, maybe that’s a 7. Wait, maybe that’s a 9. As I laid in bed looking at the clock, I watched that number change before my eyes between those three numbers. Sometimes 8. Sometimes 7. Sometimes 9. After a few minutes of this, my brain realized it was the perfect moment to learn a lesson. I’ve generally described the blind spot from the perspective of driving and not seeing a car in one glance and then seeing the car in the next glance. Makes perfect sense. I’ve also talked about missing the first letter of a word or the first word of a sign because it’s on the left side. What I realized this morning is that letters and numbers are very difficult for me because, depending on the focal point for me, and the subsequent location in relation to my blind spot, they actually change on me. Who knew! I could clearly see the top line and the right side line, which exists in all 3 numbers, but the left side line and the bottom line were coming and going. Now it makes sense why I have such difficulty reading out a string of numbers without using my finger as a guide. It also makes sense why I have to double and triple check money amounts and credit card numbers and things of that nature. (Also my human factors brain comes out for a second to comment on the importance of the font type for readability.) A new awareness for me. Starting the day off right!

As a final note. Some of you may remember my experience with an analog clock in the hospital. The analog clock helped ground me in reality because I knew what it was supposed to look like and if it looked off I knew it was my sensory perception that was jacked. Since then I have felt most comfortable with an analog clock available somewhere in the room. Now it appears that digital clocks can be my friend too! It just took some time to figure that out (pun intended…I hear your groans).

Visuals from my Cognitive Testing

CogAll

I’ve had time to look at the materials from my cognitive testing a little bit more and these pictures are my favorite thing. They are from a test called the Rey–Osterrieth complex figure test (ROCF) which is often used in assessing people with neurological issues. First I was asked to copy a complex geometric picture and after a certain period of time I was given a new colored marker. This allows us to see the order in which I drew the figure. This is the top picture. Second, the original graphic was taken away and I was asked to draw it again from memory. That is the middle picture. Finally, after some period of delay, I was asked to draw it again from memory. The pictures were then scored based on how many of the original components I was able to reproduce.

I have since Googled this test and have seen many other examples of other people’s drawings and I just find it so interesting. I can see into how my brain works a little bit. For instance, because of my visual deficit on the left, all of my drawings start on the right and work their way to the left. Each drawing gets less detailed, obviously, but more so on the left where I simply have no idea. Also, I take much longer as you move down, demonstrated by the fewer colors in the markers.  One of the things I’ve noticed and this confirms is that I have trouble with big picture processing. Whereas in other people’s examples, there are full drawings that start with the overall shape, mine all focused on the details on the right side first. Obviously this is a hard task even for someone with no brain trauma. Nobody would do this perfectly. It’s the insight into how my brain now does thing, how visual information is processed and organized, that I am excited to have some actual data about.

I like these so much I hung them up in my living room so I can enjoy them all the time. 🙂

Visual examples of my visual world

I recently learned the name for my visual deficit – left homonymous hemianopsia. I have always had difficulty describing what I’m experiencing. Now I can share some visual examples. Remember that none of the black or grey areas are visible…it’s just the smaller field of visibility that I see. The first photo is a good representation of the field cut. The second series shows the out of focus left half that the brain is trying to fill in. That’s what happens to the left side of people’s faces for me!

Finally the link is a video of someone walking around with this condition, though on the right instead of the left. You can see how disconcerting it can be to be aware of missing so much.

I do have some upper left vision but none of my lower left vision currently. So my field is somewhat better than in these examples.

Thoughts for the newly diagnosed

I have been thinking about one thing I would have done differently if I knew then what I know now. I wish I would have looked at a support group as an additional information source. I didn’t start going to one until 6 months into my treatment. I could have learned so much about what I was about to go through by just listening to other people’s experiences much earlier. I could have heard questions and topics I wasn’t even familiar with. I might have been prepared for insurance denying me treatment. I might have better understood the effects of steroids. I only looked at a support group from the emotional support aspect and I didn’t feel I needed that. My perspective shifted when new people came into our Cancer Support group early on and I felt like I had useful information to pass along. So my suggestion is to find a support group right away…for survivors, for caregivers, for anyone related to your situation. You don’t even have to talk. You will absolutely learn things that can help you navigate what is to come.

Training my brain

I recently had a cognitive evaluation to understand how my brain is actually doing after surgery, radiation, and chemotherapy. The results were in line with what I’ve been experiencing, so it’s nice to have validation. Now I can focus on doing things that will target my impaired areas. I’ve actually been pretty spot on with my previous suggestions of playing piano, learning braille, and my paint by sticker books (in terms of them being good exercises for my brain). I will be adding each of these to my daily activities to the extent I can. I also have known that I need to challenge my brain with new things – and my neuropsychologist also suggested some things that I clearly will not be good at, such as playing catch or tennis. I’m going to take this guidance as a challenge to have adventures, to actively try things that I wouldn’t have because I’m scared or am convinced I won’t enjoy or I’ll be terrible at. As long as it is something safe (Dodge Ball is probably out), then why not?  When my gut reaction is no, I’ll stop and rethink. (It’ll be like Jim Carrey in “Yes Man” when he just says yes to everything). I need to work on hand-eye coordination, so maybe I’ll add juggling into my activities! That will be hilarious. A dance class? Also would be hilarious.  There will probably be many frustrations along the way, but there’s no reason not to add a little adventure to my recovery! Suggestions are welcome!