Last week the MRI of my brain was clear of any recurrence of tumor. Honestly, I was surprised. Looking back on previous yearly MRI’s, I realized I’m always surprised.  I always expect a recurrence. Which is strange for me, considering that positive thinking is my mantra. During the time leading up to the MRI, I usually get nervous and a bit worried. But in my defense, it’s not really negative thinking. I don’t feel depressed or negative about the possible recurrence. It’s more like I’m getting prepared, and worried about how my kids will handle it. This time, the neurosurgeon said my brain looked “pristine.” And now I only have to return every 1.5 years for an MRI. That’s progress!
I spoke to my neurosurgeon about the fatigue and he suggested that instead of taking stimulant medication, try caffeine. So for a couple of days I drank a caffeinated beverage with breakfast, and it seems to work pretty well in reducing the fatigue. I now have an actual DOCTOR’S ORDER to drink my beloved Dr. Pepper, which I usually have about once a year now. He will also refer me to a neuromuscular specialist to see why my feet are tingling. Perhaps the neuromuscular specialist will order candy and fried food and donuts….
As you read this blog, it may look like all I think about is my health, but I really don’t. It just happens to be the topic of this blog. I have a full and happy life and I especially like to blog about things I learn as I move along and interact with fellow life travelers.
This morning I attended the funeral of a woman in my neighborhood I have known for 20 years. Ten years ago she was diagnosed and treated with the same brain tumor as me, a meningioma. Last week she died from the result of six meningiomas taking up space in her brain. I read a study that found 81% of people with meningiomas are alive 10 years after diagnosis. And 54% are alive after 20 years. That’s only 14% worse than the expected survival rate for people without meningiomas. Considering I will be 71 at the 20-year mark, that is a nice long life, and I’m not afraid to die. I am happy that my friend has moved on and wish her family love and comfort as they grieve her loss.

A Great Day

Have you ever had such a great day that when it came time to go to bed, you just didn’t want the day to end? That’s what happened today. I graded papers all morning, then went to tai chi, then ran a couple of errands, then back to grading papers. The internet went down for a while and I visited with a neighbor. Just an average, no big deal day. Here’s the great part: I was not fatigued at all today. That almost never happens; it’s like a miracle. And now that it’s bedtime, I find myself not wanting to go to bed, because I feel a little scared about what tomorrow will bring. But I feel great right here and right now. So I am enjoying the present, letting the fear go, and life is good. Good night.

Nurse on a Train

Sometimes things seem like they were just meant to happen. This morning as I waited to catch the train to the University of Utah (U of U) campus, I struck up a conversation with a nurse who takes care of stroke patients at the U of U Hospital. We didn’t sit by each other on the train, but all the way to campus I kept thinking that I should ask her if she could recommend a rehab neurologist for me. I’d like to follow up with a neurologist regarding my fatigue and tingling toes. When the train stopped I asked her my questions and she gave me her name and said to call her. After teaching class this afternoon I gave her a call and we talked for about 45 minutes. She gave me so many great tips and advice. Thanks to her, when I see my neurosurgeon next week, I have a list of questions to ask him, which will include requesting him to refer me to a neurologist. I will talk to the neurologist about trying some medicine that helps fatigue. The nurse on the train was great. She listened intently, had valuable advice and insight, and has given me a new perspective on my recovery. She said compared to most of her patients, I am doing phenomenally well. I am so glad I ran into her. What are the odds of that? I’m glad I’m so friendly. She was standing right next to me, and if I hadn’t said hello I would have missed this great opportunity. How cool is that?? And on top of that, I teach nursing students how to do what she did for me today – she cared and she made a difference. Nurses rock.

What Happened?

It’s been about 3.5 years since my brain surgery to remove a meningioma. It was a life changing experience. I am finally getting curious about exactly what happened after surgery. I don’t remember a thing for about 3 weeks, except for the out of body experience I had.
For the past couple of weeks my fatigue has become very burdensome, so I am wondering about how damaged my brain was in surgery. I looked up some of my old lab and imaging results and have discovered quite a few things that I did not know about. For example, along with swelling in my brain I had a subdural hematoma, a subdural hygroma, a hemorrhage, widespread seizure activity, a cyst on my pituitary, and a dead spot on my pons which was probably due to a stroke. I haven’t looked up my actual medical chart yet, so I don’t really know what went on while I was “out.” I’m beginning to think that I am doing REALLY WELL considering all the damage I am reading about. I’m wondering why I am not more disabled, or more dead. I will ask my neuosurgeon about this when I see him on Valentine’s Day. I think I will most likely take a look at my medical chart, and review the blog entries my kids make when I was in the hospital. I’m not sure why I am so interested now. I just feel that a few weeks of my life are missing, and I’d like to know what happened. Not sure why I need to know. I think it’s just human nature – we always want to know why things happen, so we can frame it in a way that makes sense. The good news is that I am wondering why I am so well, instead of wondering why I am not so well. Could be a lot worse.