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How do you pack for a brain tumor? You don’t!

Published on June 6, 2017 in Share Your Story

My meningioma was over 20 years old, 6 cm in size (size of a plum ) and in the back of my head. Everything seemed fine until about a year before it was found. I started with my primary care to discuss headaches, joint pain and fatigue. No idea what was going on but told I was getting older and to expect these things. I then went to a Rheumatologist and sent for blood work and to get an EMG to which I was told it was carpal tunnel and that any other diagnosis would have to wait until it got worse. oh Joy! 🙁
I went back to my primary because the head aches and throbbing were getting worse and I had no answers. I may have been getting older but the decline was rapid! The next doctor was for allergies because I was having trouble breathing through my nose and again, the headaches. After being told I needed to start allergy therapy I found a new ENT. The new ENT did a CT scan but it did not explain to him why I had these issues. He then recommended I see a neurologist however, he would not give me a name or write the recommendation. I called my primary and they wrote it for me. I truly had to believe in what my body was telling me and keep at it.
On a random Tuesday, the neurologist did a MRI and found a tumor, it was large and fluid had built up. I was admitted that day and started on steroids to reduce the swelling. After 4 days in the hospital, the swelling had gone down enough to do the surgery. The neurosurgeon stopped in everyday to speak with me and we discussed what to expect afterwards. I was expected to recover but because of the size of the tumor and the fact it pushed my brain into my sinuses (reason I couldn’t breath) no one was sure of the level or speed of recovery.
On a Monday morning in September I went in for surgery. It took about 6 hours and the tumor was bigger than they realized but it was gone. I was in ICU for 2 days and in step down for another 2 days and had several scans in the process to make sure all was well. I kept the shunt and staples for about a week, maybe more. My battle scar is on my neck, the tumor found space where it could.
After the surgery, I was very shaky on my feet but I felt pretty clear headed. I couldn’t see very well which was something I had not expected! I slept a lot and listened to stand-comedy over the next month or so. The horrible headaches and throbbing went away, I could laugh again without feeling like I would pass out or scream in pain after the laughter. Also, the world didn’t spin when I closed my eyes.
Finally, after a year of living half a life, I was enjoying things again that I didn’t fully realize I had stopped. I could stretch in the mornings again!! Man that felt good! 🙂

I am type A personality so I was going to recover and recover quickly!! The physical therapists were great and helped a lot! My eyesight was greatly improved from after the surgery so I was approved to drive after a driving test. I went back to work after a total of 15 weeks out of the loop. Most people would say I am recovered but I feel the slips in my speech, my stumbles and sensitivity to light in my eyes. I compare it to walking on steps that are not the same space apart. I have to pay close attention to the steps, I will still stumble and I will miss most of what goes on around me.
I am relieved to still be able to support my family but fear and depression rule a good portion of my days. I see several people and have a good support network for depression. It is very common and no one can prepare you for this part.
I have found that no two people have the same recovery so you will find very little on recovery past the first month. That part is pretty standard, the rest is dependent on the person, size of tumor and location. Just don’t get wrapped up in how some people “recovered” in a few weeks. The devil is in the details!!!!
FYI – I am in sales and travel a great deal for work. Airports can be difficult because of the level of sensory around me. I will be asking my ophthalmologist for prescription sunglasses that I can wear at all times. I am stubborn (Type A) so a cane is not an option when I have long days and find myself stumbling more. I try to sit down and rest as much as possible and no more running in airports because my connection is too close.
I promise I am trying to slow down and also not worry my family (as much). Also, I get through security just fine with the titanium mesh in my head. I am still upset that my super powers have not been unleashed yet. Heee Heeee!

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