HardenedRoad's Journey with Brain and Spinal Cord Tumors in Adults
- 1 Clinical Trial Icon Clinical Trial
- 2 Side Effects Icon Side Effects
- 3 Oh No Icon Oh No
- 4 Procedure or Surgery Icon Procedure or Surgery
- 5 Drug or Chemo Therapy Icon Drug or Chemo Therapy
- 6 Radiation Icon Radiation
- 7 Celebration Icon Celebration
- 8 Loss Icon Loss
- 9 Decision Point Icon Decision Point
Survivor: Brain and Spinal Cord Tumors in Adults
Patient Info: Finished active treatment more than 5 years ago, Diagnosed: almost 21 years ago, Female, Age: 37
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Experience Icon Descriptions
Procedure: Drag this icon to show a procedure.
Radiation: Drag this icon to show a specific radiation therapy experience.
Drug Therapy: Drag this icon to show a specific drug therapy experience.
Clinical Trial: Drag this icon to show a clinical trial experience.
Side Effect: Drag this icon to show experience with a specific side effect.
Oh No: Drag this icon to show when something bad happened (e.g., cancer’s back, lost job).
Celebration: Drag this icon to show when something good happened (e.g., last treatment, hair is back).
Loss: Drag this icon to show a time of loss (e.g., lost hair, lost loved one).
Decision Point: Drag this icon to show a time when you had to make a tough decision.
Other Care: Draft this icon to show a time when you needed other care (e.g., hospice, psychotherapy).
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Temodar - oral Chomo pill
Clinical Trial
I was 16 and did very good with the pill. I remember sleeping more then usual but months prior I had bought concert tickets and RSVPed to a party. I attended both! At the concert, my Mom went and took my Tremodar. She wrapped it in foil to keep the light from it. Right before my favorite band, Hanson, took the stage then I drank down the pills. Needless to say, that starting an addiction with Aquafenia water. I threw up my pills 1 night out of about 40. The worst part was waiting for my doctor for appointments. Being on a test drug then I should not have had to wait more then an hour in the empty waiting room every time. I normally had my appointments back to back (day at the hospital) so there were times that I left before my appointment. At the end, I ended up not making the appointment to wait an hour+ and risk not seeing my Radiologist.
Hair loss (alopecia)
Side Effects
I had a few side effects hair loss from the radiation and I got a little tired and threw up once from the chemo.
Misdiagnosed
Oh No
As a young child, my Mom was a stay at home Mom and my Dad drove an 18 wheeler nearly 70 hours a week. After not seeing me for very long, my Dad came home from work when I was 7 and noticed that my left eye was not moving correctly. My parents took me to specialist and they diagnosed Daune's Syndrome. The procedure for the diagnose included an MRI but none was given. My parents just told the Dr. that the eye was not bothering me and he just set us on our way. I continued life with Daune's Syndrome, not asking about treatments. My 16th birthday fell on a Saturday and we were setting up for a party. My sister couldn't attach the streamer so I got a chair and when I looked up then I got dizzy. We should had known that I was going to kick cancers butt by the fact that I attached the streamer prior to sitting. That day, I could not keep any food down. It went on for over 2 months because I'd be able to get up and got to school but on Saturday...I got so dizzy that I had to sleep all day because opening my eyes just made me nauseous and run to the toilet to throw up. Easter break, I was sick but had a driving appointment at driving school Tuesday so I went to the appointment, drove for 30 minutes and went home. At home, I didn't feel as bad as the days before but not 100% right. I laid on the sofa eating saltines. My Mom said that if I didn't return to school that I was going to the hospital. I woke up and felt fine, ready for the day back to school but I knew that I needed to go to the hospital. After over 12 hours in hospital and a transport to a bigger hospital then I was finally diagnosed with brain stem cancer.
Surgery
Procedure or Surgery
April 27, 2000 was my initial surgery where a biopsy was barely able to be obtained because of the tumor being hard, solid. I assumed from the 9 years prior that I had gone misdiagnosed. February 5, 2002 then I had a cyst (on the tumor) removal surgery. Then in April of 2002 then I had shunt infection. I think that I had 2-3 more surgeries that month exturalizing the shunt to see if it was needed, then removing it and putting in a stent as the drugs were so harsh that they were blowing out my vines fast. Later in 2002, I had to have an implant of a .2 gram weight implanted in my left eye lid to shut it. I was to that if the eye ball drys out that I'd loss it. In 2005, the inplant was falling out of my eye lid so I had a surgery to have it removed.
Infection
Drug or Chemo Therapy
Vancomycin is such a bruttle drug to your veins. I had to have a stint put in.
External radiation
Radiation
About 30 days!
Anniversary
Celebration
I got a tattoo for my 10th year anniversary. It was also my 26th birthday. Who knows, it could had been my 19th anniversary since I had been misdiagnosed???
Lost loved one
Loss
I lost a good bit of body function. In surgery February 5, 2002 then due to Radiation and Chemotherapy then doctors were able to remove 80%-85% of my tumor that had my nerves embedded. I also lost a friend of mine...same age...same diagnosis (Astrocytoma). That could had been me in that coffin. Worse funeral that I've gone to by far.
Getting Back Up
Decision Point
All of my decisions were ushered by my parents, not saying that they made them for me. I had 100% of control as long as I was coherent. For the past 5 years after the Dr. told me that 'the tumor looks like a scar on the MRI' then I've had the hardest time picking up my broken dreams and plans for the future being disabled now. And the economy has made it even harder.