“ningi”

Long, my sister and I have decided to name this tumor of mine (did I just claim this tumor…?). Long suggested, “Toomy.” Samy suggested, “Joe.” I think I am going to go with Ningi instead because it is more similar to the scientific name for it. I know it sounds odd that we are naming this thing that is causing me so much distress, but it is better to look on the positive side rather than the negative. right?

Here are the up to date details below. Oh, but first, I wanted to mention that I have an funny shaped head, but please just bear with me….Long and my sister can’t stop making fun of me….(boo!).

I want to let you all know that of all of the tumors I got, I got the “best” one, Benign Meningioma. The reason why it is the best one to have is that it is benign, slow growing and is not cancerous. AND because it did not actually IN my brain. Yay! It’s sheer mass in my cranium is creating intracranial pressure within my head and giving me unpleasant symptoms that I previously mention. Tumors are categorized into grades with Grade I being the least threatening, which is what Ningi is. Recurrence rate after surgical resection: 10% after every 10 years (only if all of the tumor was removed).

The only bad is that after the surgery it is highly probable that I may lose my sense of smell. If I did lose my sense of smell or it is altered dramatically, I would be disappointed. I have already discovered a change in my palate. For instance, I find that coffee is not as good as it used to be for me. When I drink it, I can’t drink more than a handful of sips before I toss it out. I don’t know if this is a good thing or a bad thing. I love coffee, but I do not like being dependent on it. Also, certain foods aren’t as pleasing to me anymore. Like regular foods are either bland or bitter. It is almost as if I had pregnant woman’s palate….sigh….I could also just be getting depressed too…uh…I won’t get into that…

If you look at the photos below you can see why—it’s located in a spot that has a lot of blood vessels and nerves to my nasal area. The Neurosurgeon says that it looks like it has been growing for several years in my head. SEVERAL YEARS! I was shocked when he said that. Something must have triggered it’s size recently because the symptoms did not start popping up until 2-3 months ago.

There is no complete cure for tumors and its cause is unknown. In fact, anyone could be walking around with one in their head for years—like me. That is kind of scary. My sister now wants to get an MRI and I think my Mom should get one too. She has had Schizophrenia (which is not related to brain tumors) for years. I wonder if there are any other complications that she is dealing with.

My surgery is scheduled for Thursday, October 29th, at 8 AM, but we’re checking in at 6 AM (they want us to be there early). I should be in the hospital for 2-4 days. I hope I get to go home sooner as the expense is high. The hospital is located Kaiser’s Redwood City building. Wish me luck. I will be thinking of you.

This is me standing and facing you. You can see the tumor right in the middle (the light area). It is about the size of a golf ball or a tennis ball…about 2 inches. It is located just above my optic nerves and is actually NOT located in my brain, but is right out side of it compressing it.

Me off to the side facing left. Ningi is getting LOTS of blood supply.

From the top. My head is facing upward.