The Experience

The Experience

Name: Dwight
Type of Cancer: Ependymoma
Diagnosed: 81
By: Dwight
— Categories: Adult   Brain  

Dwight lives with his wife in South Carolina on five acres. In this Inspiration Story, he writes about his experience with ongoing symptoms that eventually lead to an ependymoma diagnosis. As a man in his early eighties, Dwight describes in detail how he navigates survivorship to the best of his ability.


Putting the Puzzle Together

In the following discourse it would appear that I had a first person, front row seat to all that I am reporting. All I can say is that I was there. I do not have much memory of what all happened after about ten days following the start of this event.  Thanks to excellent care partners and good note taking, I have mostly been able to put things together.

On the morning of June 3rd, 2019, while doing my morning exercise routine, I suddenly became very nauseas. I was about half way through my usual 140 pushups. I had to make a run for it. I vomited just about everything my system had in it. I tried to finish exercise. I could not because of the nausea. The vomiting spasms were the most violent and excruciating thing I have ever experienced. This continued for the day. Any effort to eat resulted in immediate loss of what was consumed.

The next day I decided that I needed to get some help. My wife and I went to an immediate care facility. I was given a shot for nausea. It may have helped for about two hours. Things continued to go downhill from this point.

I will spare the details of activities that occurred over the next four weeks. There were several trips to the emergency room, visits to my regular doctor’s office, and a two day stay in the hospital evaluation center. All of these visits resulted in no change to the nausea, nor any attempt to diagnose what was going on.

During this time I became extremely sensitive to light, sound, couldn’t stand, could hardly walk, could not eat, could not swallow, could not talk above a whisper, and developed continuous hiccups. I lost 25 pounds (140 lbs. normal weight). I reached a point that I was beginning to try to figure out how to end this deal. Miserable is the word that best describes my state of mind.

As a result of staying in the hospital for the evaluation, I had to see my primary care physician (PCP). This turned out to be the lifesaving move. He was a bit upset that no attempt had been made to do an MRI, CT, or any diagnostic procedures. He immediately ordered an MRI of my brain and a CT scan of my whole body.

Diagnostic Tests Finally Revealed Answers 

The MRI and CT scans were performed on July 3, 2019. My PCP got the results on July 4th. He immediately called an acquaintance that is a neurosurgeon and set up an appointment for me on July 7th. He called me to come into the office immediately. The MRI diagnosis was: A mass in the caudal aspect of the fourth ventricle that contains hemorrhage or calcification. The base of the 4th ventricle is opacified and there is edema like signal within the dorsal aspect of the medulla. The mass measured 16x15x18 mm. Surgery to remove the mass was performed as quickly as it could be scheduled on July 16, 2019. The mass was benign and unattached to the brain stem. My neurosurgeon referred to the mass as a “low grade Ependymoma/with hemorrhage”.

We were surprised by this finding because in December of 2018, I had an MRI that did not show any signs of a tumor and I was told that I had a normal “old man’s brain”. What prompted the MRI in December of 2018 were issues I was having with depth perception. For example, I would had to reach out and touch objects that I was passing by, especially if I was turning left. If I didn’t I would bump into said object (door jambs, dresser, etc.). 

Per my neurosurgeon, my exercising caused the tumor to hemorrhage, and its location on the nausea control center of my brain stem caused all the problems that I had. My neurosurgeon also related to me, later on, that she had concerns that I would survive the whole process. She stated that it was not the tumor per-se, but its location. It was shutting my “systems” down.

Ongoing Recovery

Recovery has been an ongoing process these last three plus years. Initially, I had to learn to talk, walk, eat (including a feeding tube for 2 months), overcome electrolyte issues, and control bladder/bowel functions. Stamina was non-existent. I also developed a right lung pulmonary embolism during recovery. That has led to shortness of breath.

I have numbness in the saddle area of my right side that goes down right leg to foot. This has gotten a little better. My neurosurgeon attributes this to nerve damage resulting from the surgery.

I started driving again in October. I have progressed to the point where I can work outside for up to five hours, depending on how much I use my legs. I have not regained the muscle mass in my legs. I am about 10 lbs. short of where I was initially. My exercise routine is about 60% of where I was. My upper body has done well. My legs have been the slowest and show the most atrophy. My resting pulse rate has come down from the high 90’s to the mid 60’s. Before the tumor it was in the mid 50’s, and I could get up to 140+ BPM on an elliptical 40 minute routine. Now I am limited to about 115 BPM on a flat 30 minute routine.

Swallowing and eating continue to be a problem. A lot of the foods that I enjoyed before the tumor no longer taste good.

I still have to be careful with bending over and moving quickly. The “navigation issue that led to the first MRI is still there and has not gotten worse. Post-surgery, I have had MRI’s of the entire spine, and routine of the brain. To date, things have looked great.

The whole experience leads one to re-examine all aspects of one’s life, and offer thanks and gratitude for the gift of life. My goal is to return to where I was while trying to “ignore” the fact that I am 81 years old.

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