Joy Rose's Brain Cancer

As of Easter 2019. I am on round 3 with this brain stuff!!! Anaplastic Oligodendroglioma grade 3, it is a diffuse tumor, like "sand in grass". APRIL 24, 2020: In the midst of the COVID-19 pandemic, I have been deal with a resurgence of my brain cancer for a year, Easter 2019. CCNU looked like it was working, as evidenced by the December 2019 MRI, tumors were shrinking. I took round 4 of CCNU January 2020 and my bloodwork took until April to rebound. my April 23rd MRI feels like a gut punch. Brain cancer sucks! The tumors outwitted the chemotherapy. They grew back. Appointment next week to plan proton radiation. 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 [email redacted] 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.

Please visit my Caringbridge page. https://www.caringbridge.org/visit/joyrose I have brain cancer. An Oligodendroglioma brain tumor was discovered in January 2009. I feel so guilty and for causing such financial strain on my family. I have seen fundraisers of all sorts. I do not think mine is any more special nor important. I'm asking for help with brain tumor checkups and travel to doctor appointments. I have 8 years of surviving this brain cancer, and I have charged all of my copays, coinsurance, and deductibles on credit cards. Hospitals and clinics demand payment in full. I've been turned over to collection agencies by these facilities. I am now thousands of dollars in debt. We have moved twice since diagnosis for better wages for my husband's job to try to allieviate debt. After the housing market crash, we had to walk away from our house with our first post brain surgery move. It did short sale a year later. Our credit has taken repeated hits since diagnosis. We have taken out loans on retirement account . Thank goodness for a job. I hope to survive for many more years, therefore, I need to pay copays, coinsurance, and deductibles for years. Asking for help is NOT in My comfort zone. My 2 brain surgeries, 2 years of chemotherapy (estimated 19 rounds), and 33 radiation treatments have caused many other health issues, including panic attacks, depression, and other ailments, including symptoms associated with traumatic brain injury. My stamina is non existent. I barely manage to keep my household going. I do not qualify for disability. Each brain check with MRI costs me approximately $289+. That is just the tip of the iceberg. In 2012, every round of chemotherapy? $225. Every radiation treatment? $100. As you know out of pocket costs keep rising. I've been poked and prodded for many other things relating to getting cancer. Everything that could be something has to have further testing, resulting in further costs. CAT scans, xrays, blood tests, probes and scopes, several suspicious skin formations cut off and tested, cysts aspirated, and several shots and medications given. My 19 rounds of oral chemotherapy and 33 radiation treatments has wrecked my system, changing my normal functions. Brain checkups help monitor the cancer, thus helping me stay alive. To add up my cost of the 2 brain surgeries, 19 rounds of oral chemotherapy, and 33 radiation treatments overwhelms me. I had plans that were destroyed with this darn diagnosis. I had been a stay at home mom, but I was going back into the Army National Guard. I was almost in shape to retake my physical, and I was getting my paperwork together in order to become a substitute teacher to put my educational degree to good use. My plan for years was to do all of this after I turned 38. This diagnosis happened only a month after my 38th birthday. The tumor was discovered in January 2009 after I experienced a grand mal seizure. Alas, my plans were thwarted by my brain tumor diagnosis. My youngest kids were 12, 9, and 7 when I was diagnosed, so they got their "normal" childhood, that I had envisioned and sacrificed for, ripped away, and it was replaced with wondering how long their mom would live or when we would move for a better job in order to pay the bills. No stability. Every cancer journey has a lot more to it than just fighting the cancer. If you want to know more details about my brain cancer journey, there is more information about me on my Caringbridge Site, including pictures of me after I slammed my face onto the ground during my blackout seizure, and pictures after my surgeries, and during radiation treatments, where my whole head was locked into a mask. If you look at my Facebook, as with everyone, those posts are just the "highlights". For every strenuous day, good ones too, I recuperate for 3. My Caringbridge Site