So there are just five days until I am scheduled for another MRI and a followup with my neurosurgeon on Nov. 4. While I have no idea what he will say, I am looking at it like a countdown to returning to work and am measuring my progress against it. Although I have not been away from work or done so little for so long since I was in middle school, I am amazed I am not going stir crazy. I think partly this is because it’s just not that easy or pleasant to do much of anything without being able to see and because I feel like my recuperation is my “job” right now and I plan to work as hard as I need to to get better as soon as possible.
I have actually been able to get out of the house and my sweatpants for some events lately, such as the Alliance for Education fundraiser
(which was fun but very tiring) but for the most part, my days consist of my couch and CNN. (If you need anyone to do media monitoring on an issue, I’m your gal.) I have seen every political ad running more times than I could count and could now do a thesis on Election 09’s best/worst political ads.
Over the past week I have devised some creative workarounds to allow for greater functionality in my right (bad) eye. I was told to try to patch the good eye to strengthen the bad one but was reluctant to do it because when the good eye was patched, I was unable to see, read, balance myself, walk because my vision was so poor. But I followed a hunch and went to Walgreen’s and bought some low-powered reading glasses that allow me to see much better from about a foot away and farther. I coupled them with some nice cosmetic applicator sponges that help buffer my very, very fragile head from the earpieces of the glasses. I still cannot see up close but I can hold things a foot away to read them. This is a huge development for me and has led to a vast improvement (even after the readers are removed) in the acuity in my right eye because I have been patching much, much more.
However, the very bad news is that while my sight is improving individually in now both eyes, together, they are still a disaster.
They are persistently crossed (or experiencing what is called diplopia, I learned) and therefore I end up closing the right eye when I want to see anything. This adds strain to my left eye, weakens my right and makes it impossible for my brain to rewire itself correctly for binocular vision. Hopefully I will know more next week if it’s a muscle issue, a brain issue or both in getting the diplopia to stop. But it’s extremely frustrating, tiring and dizzying to see the world this way.
Other ongoing issues are my headaches, which are still a daily occurrence and range from deep pressure headaches to stabbing pains. The stabbing pains apparently are nerves reconnecting and cannot be managed with painkillers but the pressure headaches are managed with Vicodin. I still have no feeling in my right temporal area (around my eye and skull on right side) and my right eye is very heavy and weak. I suffered a setback a few days ago when a well-meaning person accidentally bumped my right temple creating a bump, additional
pressure and bruising. In addition to the headaches, I still cannot open my mouth more than a quarter-inch because of the surgical removal of my tumor-infiltrated jaw muscle. I have been doing the exercises they suggested (putting a tablespoon in my mouth and turning it vertically) but it does not seem to be helping. This is very frustrating as well as it is difficult to eat, brush my teeth, etc., without being able to open my mouth.
But on the good news front, I am still blessed daily with an amazing array of friends, family and colleagues who have continued to support me through this. The Food Tidings system has been a godsend on so many levels, it is so wonderful to reconnect with good people over a good meal. And “good meal” does not begin to do justice to the incredible, delicious food I have received over the past month. From Mehdi’s award-worthy Moroccan? chicken to Rebekah’s pasta-salad perfection and Sabina’s amazing Pakistani food, it’s been a cultural and community experience that is as much a boost for my spirits as my stomach. A special thanks again to OneAmerica’s board and staff who have continued to not only assure me that my most important job is healing but have also generously helped me keep my house in order. In addition, I have received a number of amazing and thoughtful gifts, including most recently a beautiful, thoughtfully crafted, handmade replacement for the hospital-issued muslin “beanie” I have been using every day to keep glasses and pillow pressure off my head. I have also found a great deal of comfort from my fellow benign tumor patients at the group It’s Just Benign. The site, dedicated to “provide information, support, and a means of
communication for those diagnosed with benign brain tumors,” has been a lifeline for me. I have found shared experience, shared frustration and even the opportunity to provide support for others. Over the past few weeks, a lot of people have asked me why I asked for such gruesome pictures and video of such an awful experience to be taken and I said I wanted it done because it might serve to help or provide comfort to others. This week, I was incredibly moved and gratified by a response I received to my post-surgery video from another “It’s Just Benign” member who is anxiously awaiting her craniotomy for a meningioma. She said:
Honestly Naomi, I really had a good cry after watching your video…I think I’ve been holding in all my feelings and worries for a long time and seeing you talking only 4 hours post surgery….well the damn broke. I too have searched high and low all over the net, I swear I could pass a few medical exams lol ok maybe not, but certainly been a bit educated on brain tumors :) I’ve been worried that I wouldn’t be able to even converse after surgery, worried about the amount of pain there would…but watching your video and hearing your voice…it really comforted me. I guess what I am saying is I can read all the typed words in the world on the net….but *seeing* it….made such of a difference to me! Thank you so much for posting your video….I just wanted to you to know that YOU did make a difference in someone’s life…you made one in mine…I’m a little calmer now…I feel a little bit braver too…
A final thought, to all you over the years who didn’t believe me when I told you my hair was almost completely gray and no, my “Chocolate Cherry” haircolor was NOT naturally occurring but instead courtesy of L’oreal, well, now I have proof. :-)
P.S. – To the devoted, generous and loving Albro family, my thoughts and best wishes are with you and Nate every day. I know the strength of your family and all those that love and support you will see you through. My best to you!