Just a little patience

Naomi Ishisaka birthday

At my birthday dinner, you can kind of see the diplopia (crossed eye) in my right eye.

So I had intended to write this update last week, but my efforts conflicted with my equally strong desire to avoid using the computer as much as possible when I am not at work. But I did want to let folks know the outcome of last Wednesday’s MRI and the subsequent appointment with the Harborview neurosurgeons. As many of you know, I have had some challenges in the past with claustrophobia and MRIs but am pleased to report that with only 3 MG of assistance from my dear friend Ativan I was able to get through the MRI without panic or distress. This was due to several factors that I wish I had known before my first disastrous MRI and that you might want to consider if you are choosing an MRI provider for your head.

1. The head cage for the MRI at Harborview (unlike Inland Imaging at Pacific Medical Clinic where I went before) is open around the neck instead of closed, so if the radiology tech were to be suddenly electrocuted or sucked into a sinkhole during the MRI

Happy_head_cage

This is what Harborview's head cage looked like - so open and free!

(a common occurence, I am sure), you could actually free yourself from the machine and escape. The ones at Pac-Med literally lock down around your head so you are completely vulnerable and trapped inside (I could not find a picture of this, but it reminded me of medieval stocks).

2. This could just be my imagination, but not only was the head cage larger at Harborview, but the MRI machine seemed larger as well, adding to the feeling of security.

3. The technician (just like you see in the movies) at the Harborview MRI was really wonderful and was able to talk to me throughout the procedure, giving me reassuring updates like “this segment will take three minutes” and so on. This made me feel like I was not alone and there was an end in sight. (The tech at Pac-Med said he could not talk to me because he could not hear me and vice versa, very scary.)

So with MRI completed, I went for my appointment with the neurosurgeon. After a wait, the neurosurgeon arrived to ask me how I was doing and to let me know the MRI was clear. This was not a surprise to me as it had only been eight weeks since my surgery and the kind of calcified tumor I had most likely took around a decade to grow. That said, a clear MRI is a clear MRI and I am grateful for that and the surgeons’ skilled and thorough excavation of my tumor. I then went through my sizable list of questions/concerns for him, which I am so glad I prepared in advance, for example (and I am paraphrasing): When would my jaw begin to open more than a quarter inch? (“Be patient, use your fingers to manually pull your jaw apart to stretch it out” REALLY??) How often am I supposed to patch my good eye? (“Every two hours”) When will I stop having pain everyday? (“Be patient, you had major surgery”) When will I be able to see again? (“Be patient, if it’s not better in six months, we will be concerned”) When can I drive? (“We will see in two months, at your next followup, be patient”) When can I go back to work/working out/skydiving? (“You can do as much as you want as long as you don’t experience adverse reactions”)

This last one had me puzzled. How would I know I was experiencing “adverse reactions” until I had the adverse reaction? Wasn’t this like being a human guinea pig? Did I really want to try to exercise myself into a seizure to see where my outer limits are? But despite pressing this question, I got no further advice. No advice about what adverse signs to watch for when exercising/skydiving, no advice on what is “normal” for a person in my situation to do or push themselves to do. This is a tough call to make because each person reacts differently due to their overall health and fitness level. He did tell me I should ease back into work and not try to work full time at first, which was helpful advice and what I had already been advised to do by my awesome boss Pramila. He also told me to stop taking narcotics completely and instead take a the max amount of ibuprofen all day every day but I have been slightly defying this order and taking a half of a Vicodin each night to combat nightly head pain and pressure that ibuprofen cannot overcome.

So the overarching message was to have patience, but as someone who is not known for patience, it’s hard to accept that there is not much I can do but take it easy and wait to get better. I am so very ready to be able to see again. This is very frustrating to me but I am trying to find forbearance (but it’s hard to locate when you can’t see too well).

Armed with this useful arsenal of new knowledge I returned to work part time at OneAmerica the following day and have been working part time since (four hours a day). It’s been a fairly smooth process, I learned the hard way on Friday that my bad eye does not want me staring at a computer screen for four hours straight and that I must mix up my activities during the day or face screaming pain and swelling. But other than that – and my frequent difficulty leaving on time :-) – the slow pace of reintegration has been very manageable for me and it feels good to begin chipping away at the projects that I have not been able to tackle and to again begin to do my part. To get through the day, I use my good eye for computer work and then try to patch it during meetings, etc.

As I am not allowed to drive (you are all much safer) I have been commuting from work in the International District in the afternoons on our fantastic, spanking new Link light rail. It takes about 15 minutes (if that) to get from the ID to Columbia City and the trains are fast, slick and always on time. I then either walk or bus the additional 1.5 miles or so home. I cannot tell you how much of a sense of freedom it gives me to know I can zip around town on light rail and have some transportation independence. If you have not yet experienced the elegant beauty of the light rail, you should hop on and take a ride, it’s lovely. Oh, and the Orca card? A vision in plastic.

Naomi_birthday_2

With my new Magnabilities Nugget necklace (thanks Toshi!). You can kind of see how my scar/scab/incision looks on the right side.

A special thanks to everyone who sent their birthday wishes, it was a special birthday for me and I was again reminded how blessed I am to be surrounded by such a loving and amazing community. We should all be so lucky.

2 Responses to Just a little patience

  1. Parker Wolf says:

    I would think your parachute not opening while you plummet to the ground at 200 miles per hour could be considered an adverse reaction, you sky-diving freak.

    Sky-diving … when a brain tumor just isnt edgy enough anymore.

    To be honest, I would think that if you did a little bit of the things you want to do like work out, etc and see how your body takes it, you could probably just inch forward a little bit each week and work your way back to your normal routine w/o the head-splitting adverse reactions.

    I mean, I know you wanted to have that pesky brain surgery and then go right back into your routine, but you may have to suck it up and just keep moving forward slowly.

    You could also follow my lead and just lay your ass on the couch and watch TV and, you know .. HEAL. ;o)

    Congrats on the clear MRI and being able to go back to work part-time — I know that was driving you mad. :o)

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