So, there is this anxiety that slowly builds leading up to an MRI. I usually get the results the same day. God forbid the news is bad, we would be admitted directly to the oncology unit from MRI.
The thoughts that roll through my mind are like a snowball going downhill. So, we have been told we are waiting for a tumor to form out of the diffuse scattering of cancer spreading through John John’s brain. As I explained in previous posts, first the cancer cells spread, next they concentrate (on his last MRI they lit up brighter showing they were beginning to concentrate), then they get organized and form a tumor. It could be the size of a pea or a golf ball. We have to wait and see how it forms. Cancer has no rules, it does what it wants.
So, my thoughts… It is hard to look at John sometimes. I think of the ticking time bomb we call cancer spreading through his precious head and I lose it. It is in those moments I turn to God for reassurance that now is not the time to think of this. I try to stay present. Waiting for a tumor to grow is a mind game. Inevitably I have dreams leading up to the date of the MRI. In my dreams I can see the MRI scans and I clearly see the tumor. My worst fantasies take me to dark thoughts of my first son dying 12 years ago.
Keeping present in the moment is a struggle leading up to the date of the scan. The preparations include remembering what time he can have solid food until, what time he has to stop drinking clear liquids at, making sure we have gas in the car for the long drive into Philadelphia, making sure I have toll money for the bridge and parking, making sure I have his ka-Cheetos (Cheetos) and juice for after the scan to ensure he eats quickly so we can get out of there as fast as possible, mentally preparing myself for potentially bad news, mentally preparing myself for a (possible) bad reaction to the anesthesia.
Oh the anesthesia……. 8 weeks ago after his last MRI he had what is called an emergent reaction. This involves him coming out of anesthesia thrashing and screaming for an hour straight. There is no reasoning with him. He is in a drugged haze and the pentabarbitol (medication) has not set well with him. An emergent reaction is dangerous (one of the many risks of deep sedation) because he can potentially hurt himself very badly. The thrashing motions are much like he is peddling a bicycle and participating in a boxing match all at the same time. It took 4 people after the last MRI to keep him safe. I got punched in the face. So, the risk of an emergent reaction tomorrow is very real.
The possibility of bad news is always on the forefront of my mind. 16 months of experience have not dissipated the fear of bad news. I got a phone call 2 MRIs ago that his cancer was spreading. I know the risks of not preparing and being caught off guard have the potential to knock me to my knees. I always pack an overnight bag in case we are admitted. Mentally it reminds me that reality can change in the blink of an eye.
How is John doing? He seems to be having increased symptoms of frontal lobe brain damage lately. No one knows why. It could be him hitting a new developmental milestone and the brain damage symptoms just changing. It could be the cancer spreading into the frontal lobe. I don’t know. He seems ok aside from a few episodes of nausea. But, he has never followed the textbook of brain cancer. Even when he had a 10 inch by 8 inch tumor in his head. He showed the neurological symptoms of his right side becoming weak, but never the early morning headaches accompanied with nausea and vomiting. It was more like random headaches and random vomiting a total of 4 times. So, his symptoms tell us very little.
Tomorrow we will get up at 6:30 to leave the house by 7am. We have to arrive at MRI at 8:30am for a 10am MRI. The MRI itself takes one hour. The anesthesia recovery takes 2 hours. Hopefully we will be out of there by about 1:30. Afterward I have recovery to look forward to at home. The MRI dance
Photo credits to Josh Street
With Love, Faith