Last updated: 10/1/2002
In Dec. 2000 I drove myself to the ER after having severe headaches for nonstop a month or longer. I told myself it was due to working overnights at my job. Not getting enough rest in between my night shift and my wife's dayshift. When she went in at 3pm I got up. When I got home at 8AM she got up while I slept.
I found myself falling asleep at the dinner table, in front of company, just at the drop of a hat. I had continuous hiccups, and severe heartburn. My marriage, to Kimberly of 11yrs. seemed to be falling apart, and I didnt even notice. She was tired of me falling asleep, not remembering a thing she told me even hours ago, and not being interested in her and the kids activities.
Finally, she had had enough, and she broke down and told me how she felt and that she wanted me to leave. So I promised her I would but that my head hurt so bad, I had to go to the hosp. to see what was wrong. But didnt want to go because I knew the news wouldnt be good. I had been in so much pain and sickness at my stomache that I hadnt exactly been honest with her or my family about how sick I really felt for months, even before the headaches.
The catscan revealed a large tumor mass on my right frontal brain. You have a tumor. The pain was so bad, I didn't comprehend it all. The big picture. I called Kim about 430am told her to come to the hospital, because I had a brain tumor.
After she got there, they drove me by ambulance about 45min. from here to Charleston Area Medical Center, where they repeated the MRI and Catscans and revealed the same thing. 6x8x6 centimeters in size. On Dec. 13th they operated on my brain and partially removed the tumor. After the biopsy they revealed it was an OLIGODENDROGLIOMA grade III.
My family having no idea what this all meant, other than what the dr. told them . very rare, mostly seen in older men. I only being 30 at the time. My family and wife stuggled to find all the information on this rare tumor that they could. It explained by the location of the tumor...why I had no feelings, and had changed like I had.It controlled my emotions, my behavior my thinking, my memory, and had grown so large the pressure was giving me a headache, and sleeping which now I beleive was the same as passing out and not knowing it but easily arroused to awake again. So much was understandable after we realized what all that part of the brain did.
The doctor told my wife, my mother and brothers and sister, that with this tumor, I may have about 1-2years to live. They kept this from me for about 2wks. But I knew that since they didn't come in there and horay, its not cancer, I knew it was.
Kim wanted to be sure that I wasnt going to be depressed and just give up all together before she told me.
I did not. Chemo was told to me to be not an option that it would only make me sick not reach the brain.
Radiation was started in February 2000. 7wks. 38 rounds. In November 2001 I started having seizures. My doctor had taken me off dilantin because I had never had a seizure. Now in the middle of my sleep I remember, going to sleep and waking up about an hour later in the ER. My wife hesterical telling me I had a grandmal seizure.
I ended up having 6 within 10 days. before they got me theroputic. In February I contacted Duke Medical Center. And in March had my first counseltation with Dr. Henry Friedman. The oncologist.
By April I had an appointment for another surgery. My tumor had started growing and bleeding. over the past year, and we didnt know it. For some reason the MRI's done thru the months didn't show this or we werent told.
April 29,2002... I went thru my second craniotomy for total resection of my tumor. All of the tumor was removed. I was then involved in a clinical study called monoclonal theropy where the worst part of it was being closed up in a room alone until my radiation level went down to a safe level. They injected radiation directly into the bed where the tumor was. to help kill some of the cells that still remained there. I was realeased from Duke on May 13, 2002 about a month later. Then I went for a followup visit in June. The MRI and PET scans were still clear. So I started my first chemo theropy... temador.
Really the only fallback for me with this was tiredness. There is so much to learn about monoclonal theropy it is amazing, what medical technology can do nowadays.
I go back to Duke every 2 monthes for scans and then continue the chemo with temador and ccnu.
Ive had two seizures since my last surgery but because my dilantin level was too low. I want to express to everyone with any type of illness, but especially cancer, DONT GIVE UP. I am living proof that there is hope. I am a fighter, a believer and I am a survivor. I am now 33 yrs. old and my children Noah is 6yrs now and Hannah is 3yrs. My wife and I just celebrated our 13th year wedding anniversary and we have never been happier.
Update Added 10/1/2002:
I went to Duke again in August and was given a PET and a MRI these tests revieled significant swelling to my brain to the right frontal lobe where the tumor was removed.
I was put back on dexamethasone which is a steriod to releive some of the swelling.
In the meantime since my last visit to duke. .. I had a seizure in June and in July. the one in July was a complex partial seizure.
THis was caused by the swelling.
My personality was changing... I stayed tired and sleepy all the time. Withdrawn from my family and kids. My wife kept asking what my problem was but i told her I was only tired. She also said I was not myself and the tests at Duke soon showed that she was right.
When the dr. told us that the swelling was the cause of all this new personality stuff, my wife cried of relieve. She now knew there was a problem and it wasnt all in her mind.
They put me on the steriods to take down the swelling. Had another MRI on the 26th of Sept. and it showed still swelling. Not as much they say as before, but it still looked like a large amount. I go back to Duke in Nov. for another MRI and PET. If all is well i will begin another round of ccenu. This treatment of chemo is taken one time and it lasts for six wks.
It has made me very tired but also extremely fatigued. Lack of sleep it has caused me to lose alot of sleep.
I get my blood counts done each week to keep up with the dilantin levels so that I will hopefully not have any further seizures.
We take one day at a time here and we wont give up.
Leonard and Kimberly Hewlett
17 month oligo. survivor