Joy’s Story

Site created on February 7, 2009

Anaplastic Oligodendroglioma grade 3 UPDATE: As of August 2019, I am going to the Alvord Brain Tumor Center at the University of Washington Medical Center in Seattle for treatment of my tumor regrowth. UPDATE:June30,2019: Well, it has been a long week of appointments starting with the June21st appointment at the neurosurgeon. He said it is a tumor regrowth! a week later met with radiation oncologist to discuss treatments. More can be gleaned from my journal entries... https://www.gofundme.com/joys-medical-bills?utm_source=internal&utm_medium=email&utm_content=body_photo&utm_campaign=upd_n UPDATE,as of Apr. 21: STARTING ROUND THREE WITH THIS STUFF AGAIN!!!!! The other shoe dropped.  We are now dealing with radiation effect. This is a big unknown not only to me but all of the doctors! I cannot drive again, or basically go anywhere alone. I feel trapped in a perpetual start of a seizure.  Now it's a doctor appointment here another there. Therapy here. Therapy there. And, a new tumor is NOT ruled out. 2009: Hi... I have Oligodendroglioma, grade 3 malignant brain tumor, thus, brain cancer... read my story... My email is joyanddave1996@yahoo.com UPDATE!!!: December 2013: After 33 radiation treatments and over 6 months of Temodar chemotherapy and over 2 dozen MRI scans, my brain is tumor free, for now. The after effects of the therapies continue, which continue to challenge me, but I keep on keeping on. UPDATE!!!!!! I had a second brain surgery. My tumor went malignant. :-( April 26, 2010, the month after I completed a year of chemo, we moved 2,000 miles back to MN to better our finances. I started going to the Mayo Clinic for the brain tumor. May 2011, my local clinic found cysts in my thyroid and liver. Thyroid cyst found to be benign and will just monitor the liver. October 17, 2011, there was a spot that showed up on the MRI in the surgical cavity where my brain tumor is. December 12, 2011, I had a recheck of the spot and it has grown to the size of a pea. This new tumor is on the rim of the crater while the leftover tumor from the original appears denser. My neuro oncologist fears that the tumor has changed to Grade 3. I will have my 2nd brain surgery on Jan. 4, 2012. Then after about 3 weeks of healing time, I will have to stay in Rochester @ the Mayo Clinic for 6 weeks of radiation on my brain. There is a risk that this will have adverse effects on my memory or other functions. I pray it will not. UPDATE!!!!: My 1st brain surgery was Feb. 24, 2009. At first it was estimated that 95% was able to be removed, but actually it was about 2/3 of it and removing the rest of the tumor would have caused my left arm and hand to become useless. I went home Thursday, Feb. 26th, if you can believe that! WOW! I got my 58 staples out on Fri, March 6th and I had an appointment to discuss the next steps with Neuro - Oncology on March 9th at UCSF. I will did chemo for a year. March 16, officially signed up in 3 studies about brain tumors. I hope I can help... In the beginning... On Tuesday, Jan. 27th. 2009, I had what is called a focal point seizure. It means that you are conscious for the first part while you are seizing. I had an allergist appointment that morning in Chico, CA and was waiting around to play in the Chico Community Band that I was a member of. I decided to see a couple of movies that I had been wanting to see because I love movies. I had seen "Marley and Me" first and decided I needed to see a comedy next, so I went to "Paul Blart: Mall Cop". I hadn't even gotten to the real funny parts and I started to feel "wierd." I thought that it was anaphalactic shock from my allergy shots earlier in the day.So, I got up to go into the hallway and give myself my epipen shot in the thigh as I was instructed. Let's just say that things went haywire from there. I was in seizure, but had no idea what the heck it really was. I fought my own body to get that darn epipen open and into me. But alas, I blacked out before I could.I woke up in the ambulance, and the EMT told me I had a seizure. In the emergency room, I had a CT scan and the doctor there asked me if I had ever had brain surgery before. I started to freak out! I then called Dave on my cell phone and the medical people there told me I had a brain tumor! Needless to say, I was not taking it well. I was still hoping for this to all be a bad dream. They gave me something to calm me and I was admitted. I woke up the next day with the right side of my face badly bruised and bloody, and my neck in much pain. An MRI later that day, Wednesday, confirmed the tumor. It is a low-grade primary brain tumor that has been growing for a while, with my brain "rewiring" things to adapt to it. That is why my symptoms were so hard to discern as anything but normal health "bumps in the road". But, hind site is 20/20 and I wish I would have mentioned the anomalies to my physician. Like problems with gripping intermittently and leg weakness sporadically. Along with headaches. But hey, we all get headaches.

Newest Update

Journal entry by Joy Rose

Additional information.

The clustering made it look like a macaroni shape, the enhanced MRI at Alvord let us see they were 3 tiny tumors with separate blood vessels. 

I do not know if I relayed this.

There are 3 tiny tumors in my head  clustered  together. 


Patients and caregivers love hearing from you; add a comment to show your support.

Comments Hide comments

Can you help power Joy's site?

A $30 donation powers a site like Joy's for one month. Help keep CaringBridge online for them and for you.

Show Your Support

See the Ways to Help page to get even more involved.

Personal Fundraiser
Support Links
Helpful Tasks
SVG_Icons_Back_To_Top
Top