A matter of perspective

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.

What it looks like to me to use two eyes.

What it looks like to me to use two eyes.

7 Responses to A matter of perspective

  1. Parker Wolf says:

    wow .. I get dizzy just looking at the pic and I can look away! :o(

  2. Parker Wolf says:

    that emoticon was supposed to be this: :(

  3. Claudia says:

    Wow… i get verdigo trying to focus… Argh… :(

  4. storme says:

    Naomi,

    thank you for all your sharing; you are very brave and amazingly honest! love & strength to you.
    Storme

  5. michele says:

    thanks for continuing to share your story and your struggles Naomi. i can’t really imagine how frustrating everything is. but i am encouraged by the words of your providers and even more encouraged by your determination to conitnue your work to achieve wellness. most of all i’m grateful you are alive and with us. you are a blessing.

  6. Victor says:

    Naomi- Words cannot express how impressed I am with your strength, confidence and determination to not only understand the painful process that you have been forced to deal with but also the selfless way in which you are sharing. It adds so much more understanding to read your thoughts and perspective. I am so inspired by your journey and I know that what you are sharing is having an even bigger impact on others going through something similar somewhere else in this world. You can take anything, even a tumor, and change the world with it! Much love! -v

  7. grace says:

    Naomi, thanks for continuing to share your journey, especially such potentially private options such as the progress notes from your surgery. It is very interesting folks like myself who have an interest in neuroscience. Your strength and honesty are admirable. Keep on keeping on, your sight will return, the pain will subside, and ‘regular’ life will return gradually. Slowness and stillness is good for the soul.

    Hope to see you in the mix again soon.
    xo, grace

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