Hi folks – It’s been a long time since I have written – much to say but more on that later – but I wanted to just share a few things about my experience that are floating about the Web/print right now that you might find interesting. Thanks again everyone for all your support and love!
First-person essay I wrote on my experience!
Diagnosed with a benign—but possibly recurring—brain tumor, local journalist Naomi Ishisaka did what she’s always done: She plunged into researching her condition and then inspired people with her ability to tell a story READ MORE
Naomi Ishisaka knows that getting to the heart of a story takes time and research. The 35-year-old journalist has worked for papers throughout the Pacific Northwest.
Background information is a critical step toward developing a balanced and well-rounded piece.
Ishisaka’s talent for getting to the real story served her well in September 2009, when she found herself writing the first installments of Naomi’s Noggin: My Meningioma and its Demise, a blog she created after being diagnosed
with a brain tumor. READ MORE
Happy New Year friends and family! Apologies for the belated update, I had intended to write this post for weeks but could not get it together.
So the past month has been very eventful for me, about three weeks ago, I was sitting in my office at work and looked forward and suddenly my vision aligned. It only lasted a minute, but proved to be the beginning of the end of my double vision. Just as the doctors predicted, almost exactly three months after my surgery (the minimum recovery time), the muscles controlling my eye came back into alignment. While it took about another week for it to become consistent and not fluctuate in and out, it was like an epiphany for me.
The shift immediately quelled my anxiety about it never getting better and provided me hope that I would soon be able to drive again. Sure enough, once I was confident my eye had stabilized, I took a test run with my car just a few blocks to the PCC and found it to be no trouble. The next day I tried a little bit farther and at night and again had no trouble. After that I felt that I was safe to drive again and I have been doing so with no problems ever since. This has greatly improved my ability to get back into the community and volunteer activities I am part of as well as allowed me to get back to the gym and run errands easily.
The improvement in my eyesight has improved the quality of my life tremendously and I am grateful for every day I wake up and can see without struggle or strain. On a lesser level, however, there is still no improvement on my jaw issue and in fact I discovered last week that not only am I not able to open it more than about a half inch, it is now opening crooked. The right side where the TMJ muscle was removed is pulling my lower jaw to it. But it does not hurt and is mostly an annoyance that makes it difficult to eat, but compared with my eyesight, is not too significant. Another residual issue is the feeling in my right temple/scalp which alternates between numb and itchy. This is very common and simply the nerves knitting back together but has resulted in what my friends affectionately call my “Rat Rub” gesture which involves me compulsively and repeatedly rubbing my temple to relieve itchiness and tingling.
Another development over the past few weeks has been in regard to the mugging incident at the Columbia City Link light rail station I wrote about in my last post. While I don’t feel comfortable getting into too much detail here, I did want people to know that in conversations with the police detective working on the case, I was told that I was one of seven Asian American people (all but one were women) that were mugged at the same place by the same people. The muggers were intentionally targeting Asian women along that stretch. While I did not have the time to share this more widely, it seemed like an important public safety. I also felt the lack of public information or coverage about it reflects the impact of fewer reporters and media outlets available to cover public safety issues in the city. While I am materially and physically fine from the incident, my sense of confidence is definitely shaken and I can no longer walk down the street by myself at night without looking over my shoulder repeatedly to see if someone is coming up behind me.
But I am determined to not let the experiences of the last few months inhibit me or cause me to be irrationally fearful of risk so it was with great pride last weekend that I, for the first time, went snowboarding with friends at Mt. Baker. While there are very real dangers involved in snowboarding, it is something I always wanted to do and try. The first day was a nightmare. Getting on and controlling the board was way more difficult than I had ever imagined, even after numerous people told me how difficult it would be. My friend hurt her elbow really badly right off the bat and I took several really hard, scary falls and finally got so shaken I gave up on it after about an hour. This was really, really discouraging and disappointing for me. I hate quitting but felt very vulnerable on the slopes and ultimately decided the potential danger was not outweighed by the benefits. But the next day, after thinking, regrouping and reorienting myself to the very foreign feeling of being strapped helplessly to a slippery board on a slippery hill, I gave it another try.
Following my friend Pam’s lead, I found a way to get up on the board slowly, carefully and deliberately and make my way down the run. Being able to conquer my fear and actually get down the mountain was one of my proudest moments and has given me much confidence in what I can achieve in the future.
The emergence of the new year and the new decade has prompted much reflection for me. Despite all that has happened, the only way I can view it is with a tremendous amount of gratitude and appreciation for how lucky I am. I am lucky for too many things to mention, but some notable ones are all of you, health insurance, the aggressive and thorough diagnosis and treatment by my ARNP and surgeons, no cancer, reasonable out-of-pocket maximums, my body’s resiliency and strength, my vision, supportive employer, my friends and family. As we begin the new decade and a new year, I want to rededicate myself to the goal of a world where everyone has the same access to good health, support and freedom from fear and want that I have been blessed with. Thank you all so very much for everything you have done for me the past few months, I will never forget it.
P.S. – A big shout out to the many wonderful new friends I have made in the brain tumor community! (Yes, there is a community.) From the early and reassuring guidance of veterans Mark, Ruth, Dante and Katy to new friends Susan, Sandy, Beth and Wendy on It’s Just Benign, your support and shared experience has been a lifeline. And to John and others who are looking ahead fearfully to what might be in store for you, please know all of us are eager to “pay it forward” and will be there for you as well.
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
(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.
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.
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!
So I am now past the half-way point before I will see my neurosurgeon again, get another MRI and hopefully be cleared to return to work. It has been an up-and-down week, with discouragement over my eye progress coupled with a number of wonderful and rejuvenating visits with many different friends. A special thanks to Dawn Mason for her amazing, famous fish fry and blanket and to Tom Griffin for his home-grown meal and good-natured commiseration. One fun fact I learned this week was that my big ghastly Harborview bill actually did not even include the surgical staff and they will send a separate statement for that later. So this $150,000 was just the tip of the iceberg. More on this as I know it.
I finally got in to see someone at Harborview regarding my ongoing pain and anxiety and discuss my progress. The ARNP assured me I was making good progress and advised me to not be frustrated with my ongoing vision problem. She said if I was not able to see in around three months, it would be cause for some concern but at this point, it was simply par for the course. I also talked with her about my continued jaw problem (I cannot open my mouth more than about a third of an inch due to tumor infiltration in my TMJ and the removal of part of my jaw muscle). She suggested doing stretching exercises using a tablespoon turned vertically inside my mouth to stretch my jaw. I have been doing this regularly and it seems to be helping slightly. It is nice to have some recuperative tasks to do and feel like I am helping myself. She also addressed my ongoing pain issues and said the sharp shooting pain I have been having is common for people in my situation and represents healing and the nerves reconnecting in my head, which is a good thing. The bad news is that she said painkillers don’t work on this problem but she did prescribe Vicodin for the deeper headaches I have been having which is reassuring.
Another illuminating development this week was the receipt of my medical chart / notes from the frontotemporal craniotomy I went through. Because I was pretty much out of it during the surgery and after, I felt like I knew the least of everyone about what actually happened to me and what the surgeons ended up doing during the surgery. I received the notes/chart on Monday and while I do not understand a lot of it, was able to get the gist of it. If I understand it correctly, in a nutshell, the surgery was much more extensive and the tumor much more invasive than I had thought previously (the surgeons used the word “drill” so often I started to think it was written by Sarah Palin). As they went in to remove it, they found more and more tumor had permeated my skull in places they had not expected. This resulted in the surgeons needing to remove more bone than they had expected and creating the blood loss and blood transfusions I would need after. I learned a number of other things, including the fact that the small incision in my stomach to graft fat into my head was not as small as I had thought, being that they actually removed two golf ball sized pieces of fat from my stomach to put in my head and then used three layers of sutures in my stomach to hold it all together. This helped to explain why the area has been so sore for so long. (Update: Now that the swelling has dissipated, I just noticed a large “divet” in my stomach where this tissue had been. I will spare you the pictures.) I also learned that the post-surgery CT and MRI actually showed no reduction in the level of proptosis (protrusion) in my skull because the tumor was so effectively ossified (bone infiltrated) and actually permanently changed the shape of my skull. All the gory details can be found here (tumor nerds, rejoice!) as I have posted the notes for posterity and particularly for folks in a similar situation.
Finally, people keep remarking on how good my eye and scar look. It’s definitely true my eye looks much more normal than it did before. It opens more often and seems to track movement better. It’s also true that my incision is looking better, less scabby and bloody and much tighter. But what’s harder to explain and impossible to see from the outside looking in is how difficult it continues to be to see with both eyes. I can see with my left eye by itself but combined with the right eye, it becomes extremely difficult. To illustrate this, I have put together a composite of what it looks like for me when I try to use two eyes to see. It’s not a perfect representation, but it gives a general idea. After a very encouraging meeting with my amazingly supportive boss this week, I have redoubled my efforts to patch the good eye and force the bad eye to heal. While this is not an enjoyable process, it is a necessary one and I am determined to do as much as I can to get better. Thanks again everyone for your ongoing love and support.