Kate Gets a New Scar

32208932_1534469185884923_r.jpegI have a brain tumor. I keep thinking if I say it enough times, it won't be so shocking. I'll let you know when that happens. 

Last summer, I had a spike in my blood pressure that drove me to the ER. After several hours of testing, they sent me home with no answers, and an order to follow up with my primary care doc. I saw her the next day, and she had no answers, either, but put me on lisinopril to control the ol' bp. Before long, I started to have altered taste, which is a known side effect of lisinopril. Then I started to notice that my tongue was numb. This is NOT a side effect of lisinopril. This is right around the time I had rotator cuff surgery after being hit by a car when I was walking (overall, it was a rough year) and I wasn't able to drive for 6 weeks. By the time I could drive again, we were deep into the holidays, so I put off going to the doctor until January. At that point, my PCP changed my medication from an ACE inhibitor to a diuretic. I was really looking forward to food and drinks tasting normal again! I waited impatiently for that to happen. It didn't.

Sometime in May, I realized that it wasn't just my tongue that was numb - now it was the roof of my mouth, my gums, and the entire right side of my face, including my ear. Well. I said to myself, "Self, this is not the lisinopril". Off I went, back to the doctor. She sent me for a lot of blood work, which came back normal, except for my B12, which was in the toilet. She sent me for an MRI to rule out anything neurological. And there it was. A shockingly white blob in the middle of my gray matter. Right. next. to my brain stem. Hangin' out. Pushing the right side of my cerebellum out of the way to make room. Squeezing my acoustic and facial nerves out of the way. Mystery solved. My brain is experiencing technical difficulties.

Keep Calm. It's only a brain tumor.

I trooped off to University of Pennsylvania Department of Neuroscience. I learned all about Schwannomas, which are tumors that grow in the myelin sheath around nerves. I was given 3 options: 

1. Do nothing.
Not an option for me. I already had symptoms. Why wait for them to get worse?

2. Gamma Knife.
Cobalt radiation directed right into the tumor. Non-invasive, and quick to recover from, but the tumor would remain in there. Maybe it would die without further trouble. Maybe not. If it needed to be removed later, though, it would now be scar tissue, and much more difficult to separate from the involved nerves. Also, what if it was in the 10% that are not benign? No, thank you.

3. Suboccipital craniectomy.
Drilling a hole in my skull, behind my right ear, and removing it. Using titanium mesh to put the piece of skull back in, 12 or 13 hours later. Having to learn how to balance again, since this bad boy is parked on my vestibular system. 3 months out of work. How ironic - I live by myself for the first time in my life, and now I won't be able to be by myself for months, until I am not a falling risk. Yup. The perfect choice. Because I want that Skull Squatter out of my head. (Not to mention, biopsied for good measure). Winner, winner, chicken dinner.

We have a few common expressions that set the standards of difficulty - It's not rocket science, or It doesn't take a brain surgeon - but this IS going to take a brain surgeon. 3, actually. On August 20, 2018, 3 days before my 54th birthday, I will be thanking God, the Universe, and anyone else who will listen, that there are brain surgeons, and that this tumor can be removed. And then I will be lying on a table, undergoing a procedure that I could not even pronounce 3 months ago. And I will fight like a girl. And I will do whatever they tell me to, in order to recover. I may not ever get the feeling back in my tongue and face. My face may actually become paralyzed from the procedure. I have a 10% chance of keeping the hearing in my right ear. I will be getting a new scar. But that's ok. It just shows that I'm stronger than what tried to get me.

Here's where you come in. Being out of work for 3 months will be very hard, financially and mentally. I will not be able to drive for 10-12 weeks. I will need a lot of supervision. I will need help with the whole taking-care-of-myself thing. You know, groceries, cooking, laundry, doctor appointments, and physical therapy. Probably a million other things I haven't thought of yet.

I will have a lot of medical expenses. And 3 months of salary to try to live without. If you feel able to help in any way, I would be more than a little grateful. Here's what I have already learned: I am stronger than I imagined, and loved more than I knew.  Now, off to be a warrior. #graymatters #braintumorssuck
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Organizer

Kate Healy Haddad 
Organizer
Norristown, PA
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