Hitting the Wall

Today was a rough day which was not a surprise and can be expected. As of yesterday it has been 2 weeks since the surgery and I have not gotten more than 3 hours of straight through sleep. My body and brain are really exhausted at this point. Further, it is the 3rd day off of steroids so I am coming down now. My body hurts and is very weak like I have the flu or ran unexpectedly for 6 miles without stretching before or after. In addition, I have been having headaches today and just generally feeling like a crap bag.

This morning was my appointment to see the neuro-ophthalmalogist for follow-up (This appointment was arranged and scheduled before the surgery. I go there every 4 to 6 months for a check-up which includes your standard vision test, testing color vision, a peripheral field vision test, and then dialating the eyes and looking into the nerve behind the eye to see if they are swollen).

Unfortunately the captioner did not show up. Fortunately Harley came to the appointment with me and was able to coordinate things. I have to admit that I was feeling like such crap that I let him handle checking me in. When I got there I had a massive frontal headache and my eyes were sore. I could not concentrate on anything and because we attained a newer vehicle just before surgery I did not have any pain relievers stocked in the glove box yet (normally I have an emergency supply stash of things that come in handy when needed). Thus, by the time we got there an hour later I was not feeling too fine. Closing my eyes and applying a cool water bottle I brought with gave me some sort of relief. I really was not in the mood to handle any glitches in the appointment. The fatigue and head pain became so intense that I had a hard time holding back crying (without tears) in the waiting room. I had no cares what others thought. While I tried to relax and find relief, Harley called around to see what was happening with providing me an accommodation.

It is a good thing my brain and memory still are in top shape because that is what had to take over. A nice woman named Linda came from interpreter services (yet she is not a captioner and a foreign language interpreter instead). She did the best she could do to type up instructions for me of what I was supposed to do. Because I have been going to these appointments for over 2 years now, I am familiar with the tests and routine and was able to know what was supposed to happen. Further, at this point I am pretty prepared and brought the entire surgery binder with me which included all my MRI CDs, written reports, basically all the info except the OHSU records post surgery that I have to attain on my visit next week, and a picture of the image showing which tumors have been debulked and removed. The resident doctor who is unfamiliar with me wanted all this information so it was good that I had it with and was ready.

For all the tests I know the drill by now. The visual field test is long and boring and takes focus and concentration to do. I was told that I did great and I have actually improved on doing the test since when my first visit back in 2005.
- My eyes have a nystagmus and want to shift around. To do this test I have to keep the eye focused on a yellow light and press a button when I see peripheral lights flash in the area outside the yellow light. For me, it is really hard to keep focused on the yellow light and not let my eye wander to each flash of peripheral white light. Hence, I must really concentrate hard to keep my eye steady and focused only on the yellow light. It is rather draining and I am always relieved to be finished with the test.

After the visual field test we went back into the waiting room until the resident doctor was ready for us. At this point my eyes were dilated and I could not read regular font. We found that 48 point bold font is still readable and works for me. I would have totally guessed it was 24 point font which is half of what it actually was!

I realized I could not read the questions I typed up in 16 point font. Thus, I had to hand them to Harley and ask him to address them to the doctor. With the lack of a captioner, 3-4 people speaking in a room (Harley and I asking questions, the neuro-ophthalmalogist and the resident doctor - he never did tell us his name or shake our hand), and my inability to read my own questions, the appointment did not go efficiently. Without real time captioning it is very difficult for me to follow the conversation and know when I can or can't speak or when someone is finished speaking. Linda did the best she could but it was not quick enough for me to follow the flow of the conversation or to know what was going on. Further, with a dedicated captioner, everything is typed quickly and all medical terms are supposed to be in the dictionary. Basically it just did not go smoothly and I did not get all my questions answered to my satisfaction.

Here is the gist I was able to attain:

Scar tissue (gliosis) is seen on the optic nerves from prior optic swelling.

The optic nerves look slightly elevated = trace papilledema.

Stay on 500 mg of diamox.

There may still be papilledema. The only way to find out is to take me off the medicine. (We came to the determination that I will take 500 mg of diamox for 3 weeks and then try 3 weeks without it and look at the nerves at that time to see if they start swelling again. If so, the papilledema has returned and I guess I can just stay on the medication indefinitely. The doctor was opposed to a shunt or surgery to alleviate the problem as the shunt does not always work and increases the risk of infection.)

Note - if you are just learning of this now, the papilledema (optic nerve swelling) is the result of spinal fluid blockage in the 4th ventricle of the brainstem. It is the opinion of the neuro-ophthalmalogist that the tumor which was removed was pressing on the brainstem and may have been the cause of this blockage. That is my understanding. My hope is that with the debulking of the large tumor and removal of the one next to it, the pressure may be relieved and the papilledema will not return once off the medicine. We will see. Otherwise it sounds like my only option is to stay on the medication for life.

I have 20/20 vision.

My understanding - I can't read things unless my head is very still because my eyes are shifting around.

This is from the nystagmus. Nothing can be done about it.

The nystagmus is worse since surgery. Will it improve?

Don't know.Wait and see.

Based on my vision tests today I can drive now.

The headaches I am having are not from the pressure.

It can take 3-6 months to recover from a brain surgery like mine. I am still recovering so see how it goes.

The enlarged blood vessel above my eye is not from surgery. ?? It was not there before surgery so that is really a mystery. It seems to have gone down now though as compared to when I was in the hospital. I did not notice it until I could see it in the mirror at home last week. Maybe it just popped out from the steroids.

After the appointment (appointment check-in scheduled for 9:30 am and we finished after 1 pm) we were pretty hungry. Even though I was really tired it is my responsibility to walk each day. Walking helps me heal and also I need it for my legs so they don't cramp up. Being familiar with the University of Washington area from graduate school, I know my way around well. We had to wait an hour and a half for the medical records to be ready for us to pick up therefore we planned to walk to the University ave where there are a plethora of ethnic restaurants. We had it on the brain to eat indian (which is actually the only thing shown to suppress these dang tumors in mice bred with the NF2 gene - the chemical curicumin found in tumeric and curry). LOL Therefore, we always have a good excuse to endulge our senses in the delightful spicy cuisine (hint - it also helps to clean out your system too!). Today we tried a South Indian food which is a little different flare from what we normally eat.

I was more tired on the walk back but made it. After we picked up the records and started driving home I was totally sapped out. It has been 2 weeks since the brain surgery and I want to be recovered already. I want life to go on as normal and be productive again and not focused on all this medical stuff. I actually started crying (and could produce very minimal tears in my left eye). I am just totally exhausted! It has been lots of work and there will forever be lots of work on this. It is a lifetime condition with no cure which is very daunting at times. I felt like I pulled an all nighter cramming for a final exam. I needed a moment to be emotional about it as I have been running full steam ahead directing everything. At a certain point I have had to compartmenalize my feelings and emotions in order to get things done and look at it from a research perspective. Back in May and perhaps June is when I took the time to be sad, scared and get over it. I had moments of feeling utter dispair and breaking down when alone in the gym at night or on the trail with my dogs. That is the way it has to be. You allow yourself the room to grieve or be sad and then you put it away so you can forge ahead and do what must be done.

I imagine I picked up this skill from having cancer at a young adult age (just turned 21). There is a point when you get the shocking news and it takes time to digest. Then you fall and perhaps stub your knee or even tear it open. At some point you must decide to pick yourself back up and bear the pain if you are going to continue on. It is how people survive. It is how one climbs a mountain. It is how one decides to cut off their arm and walk out of the desolate wilderness to go on. This is my life.

Ever so often when those of us get exhausted and burned out, we need a pause......a time to release all that has been pent up and pushed down inside for us to "keeping climbing" and "keep pushing". Now is the time for me that I will take a rest so that I can continue my journey....my odyssey.