I'm 36 and so is Joe. We will be married fifteen years this coming July. We
have two boys together aged 14 and 11. We met at the age of 16, fell in love,broke up, got back together and the age of 17, went steady for 2 years, got engaged for one year then got married. We were going to live happily ever after.
At the age of 32, Joe has brain cancer.
It all started 4 years ago, beginning of January 2001 when my husband started complaining of severe headaches. Since I am a migraine sufferer, I recognized the symptoms (so I thought). Don't worry, I said, you are finally feeling what I feel everyday! But as the headaches escalated, I started getting worried. I secretly started researching brain tumors on the
net while continuously reassuring him that they were just migraines. About one month later, the headaches worsened. He would get them upon wakening, and they would last about an hour. During the day, he would have to lie down in a dark room and wait for the pain to subside. His speech started to
slur and his writing was changing. He was not able to make circles or write numbers properly. The last warning was the accident he had. He misjudge the distant between his vehicle and another and smashed his front bumper into another car. I would say that the denial lasted about 3 weeks from the
time I started researching brain tumors that I finally decided to bring him to the emergency.
This is when our hell started.
On February 28th, 2001 he had a CT scan and they noticed a lesion in the cerebellum. The doctor told us that it looked like Medulloblastoma but he had to have the specialists look it over. That night, Joe was transferred from the Montreal General Hospital to the Montreal Neurological Institute.
At this time, we had five doctors telling us that after analyzing his CT scan, it looked like it could be medulloblastoma. Confirmation of this would only be after surgery, once pathology comes back with the results.
On March 2nd, 2001, Joe had his 12 hour surgery. It was the worse 12 hours of my life. The surgeon came to talk to me after the surgery telling me that they could not remove the whole tumor (tumor 4.5 cm in diameter). There was less than 10% of residual tumor. They felt that removing the whole tumor would not be beneficial due to his age (32). They would be risking
having some disabilitating effects.
After pathology confirmed Medulloblastoma, we had to wait about ten days to see if the cancer had reached the CSF fluid. Another stressful wait.
Results came back negative. Thank God. Three weeks later, Joe and I finally left the hospital and returned home. Then reality set in. Our lives would never be the same again.
In June, 2001 he started his radiation therapy (25 - 10). After his treatments, he passed another MRI and the results were confusing. The neurologist said that the residual tumor had definitely shrunk but in the cavity where the tumor was extracted, there was activity. He could not confirm if it was from the radiation or cancer cells. We must wait for the
next MRI in April to find out more. Did not leave with a good feeling. We were convinced that the radiation would of taken care of the rest of the tumor, since less than 10% was left. We shall see.
In September, he started his chemo. He had 11 treatments.
He received 4 cycles of cysplatinum with VP-16 and 7 cycles of Cyclophostomite
with vincristine. In between, I would
inject him once a week with Eprex and 10 consecutive injections of Neupogene a
month.
Hospital stay for the first 4 cycles included:
- cysplatinum with VP-16
- hydration 24 hours before and after treatment
The 7 remainder included:
- two bags of vincristine
- one bag of cyclophosmomite
-1 liter of mesna (to protect bladder)
-pre-meds for nausea
- hydration for 24 hours (prior to treatment and after)
- 9 tablets of decadron taken 3 times a day (for the 7 remainder cycles)
Then the outpatient treatment: (the week following the hospital stay)
- vincristine (2nd and third week)
The 4th week:
- rest week in order to start the cycle all over again.
They never postponed or stopped a treatment. Regardless his bloods, he would
receive
his dose. If his bloods were too low, he would get a transfusion before
receiving the chemo.
He had lost forty pounds from the operation but since Joe is a large framed man, he still looked healthy! (The weight loss did him good, he was a good 40 pounds overweight).
He did pretty well during treatment considering. His spirits were up, had a great outlook on life! He felt weak and tired but he still went to work. I gave him his injections of Eprex (brings up red cells) and Neuprogen (brings up his white cells). This seemed to give him more color and strength. His appetite was enormous! He ate constantly (I was not complaining!) His muscles and bones were starting to hurt more. He was feeling a little more pain. To be expected.
All in all, things were not so bad. I was just concerned about reoccurrence. From what I had read, nobody would talk about having residual tumor with a success story. This would worry me. I had nothing to base myself on.
I must say that you see life so differently then others do. You don't harbor on little things, you appreciate the sun rising, the birds singing and you really see how precious life is. In a funny way, I take Joe's cancer as a godsend. I consider myself luckier than most because I "LIVE" life, "BREATHE" life, "EMBRACE" life while others just run through it. I appreciate the time I have with my husband a little more than most people
(in my opinion) Most people just exist..............I AM.
Today, Joe is going on his 5th year of remission. He feels great and is back to normal except for a little numbness in the extremities. He has suffered about 50% hearing loss and his short term memory is not what it used to be but other than that, LIFE IS GREAT!
There is hope battling this "monster" and Joe along with many others are the proof of this. He had his regular 6 month MRI this May, 2005 and it came out clean!
What began as hell turned out to be miraculous and it did change our lives...................for the better!