My Experience with Caring for Someone with Gliosarcoma
12/24/14 -
On Sept 7, 2014, my wife’s cousin collapsed while talking on the phone. She was in Greece at the time and eventually discovered that she had a seizure. Prior to the seizure, she had been noticing that she was beginning to have difficulty with word retrieval (Aphasia). She had a series of MRI’s and decided to come back to the States to find out what was going on. She went to Tufts University Hospital in Boston. They discovered that she had a tumor on the left side of her brain. On November 9th it was removed. She was diagnosed with Stage IV Gliosarcoma, a rare,very aggressive and highly malignant cancer. So far, she has 4 MRI’s. The last one was right before the radiation began. The one before that was right after the surgery.
After reading many blogs online, I have decided to start my own. I have found that reading them were helpful and informative and every little bit of information proves to be useful in dealing with this crap. I also think it’ll be good and somewhat cathartic to vent and share my thoughts regarding the disease and how it impacts my own life.
DECEMBER 27, 2014
My wife’s cousin has a name, but I need to honor the fact she would kill me if she knew I was doing this. So for the sake of privacy, her name will be Eos. Eos is the greek goddess of “dawn” who brings hope to each brand new day.
Here we are two days after Christmas. Eos has been living with us since her surgery almost two months ago. We take her to her radiation treatments 5 days a week which ends Jan 20th. A total of 30 visits. She is taking a chemo med in pill form called Temodar. Zofran is taken to help with the nausea. She also takes Keppra, an anti-seizure medication. She is unable to drive for six months since her last seizure back in Sept. So, she depends on us for everything. She is living in our son’s room.
Eos is 59. She has no other family. She is an only child. Her mother died at 61 of breast cancer. Her father died of a heart attack about about 10 years ago. Her uncle is my wife’s father. She’s nice and connected to us, but for whatever reasons, throughout the years, she has chosen to not communicate or reach out to other extended family. She has friends in Greece, but I get the sense that she’s not very close to anyone…which means we are “it” and “It” hasn’t been easy.
The aphasia (word retrieval) and some of the memory is already getting worse. For the record, she has always been somewhat hyper and often says things in three and has always been repetitive and somewhat redundant with her sentences and response to things. e.g…“Look at that. Would you look at that? Just look at it! Look.!” or “This is delicious. This is so good. Isn’t this delicious? OMG this is so delicious!….so good..Isn’t this great?” She has an interesting quality to her voice. It’s a high end “Elmo” type. So, In many ways it’s like playing charades with a giant sized Elmo… ALL OF THE TIME! Her highs and lows have always been dramatic and she has always had very little patience when things don’t go her way. So many of the side-effects are tough to pick-up because she’s already fit the descriptions long before the diagnosis!
December 28, 2014
Today was an interesting day - Eos has pretty much been in denial regarding this situation. Even though she has been told specifically what’s going on with her, she refuses to acknowledge the severity of it all. For the past few days, she has been feeling “different” . She keeps blaming herself. that she drank too much water, not enough water, didn’t eat enough, ate the wrong foods..etc. I finally told her that she’s been taking great care of herself and that the chemo and radiation was the reason. I told her four or five times in different ways that she should prepare herself to be feeling this way or worse - But it seems to fall on deaf ears.
January 2nd
After telling me that she would never get a wig, yesterday she asked if we could help her find one. Her hair is falling out in clumps. She has long thin hair, so I asked her if she’d like to get a haircut so she wouldn’t have to worry about it so much. Her response was that she “doesn’t want to look like those kids that are on TV” She is referencing the St. Jude Hospital commercials that have been on TV lately. I want to say, “You ARE like those kids on TV”, but I still don’t think she is ready to accept her prognosis yet. Have I talked about her “prognosis” yet? Last week I called her Oncologist in Boston to ask her for her opinion abut how to handle Eos’s denial. She said that many of her patients don’t want to know. My concern is that Eos is returning to Greece soon after her last radiation treatment and will be somewhat isolated, not as cared for and will need to get her things in order over there. The Dr. said that “worst” case scenario is 7 - 9 months and “best” is 21 months or so. Eos has no idea. She still thinks that “this thing will be gone and I can get back to normal when I get back to Greece”. On New Years Eve day, my son started playing some Johnny and June Carter Cash songs. Wow! Eos was so happy and hyper. She was dancing, smiling and laughing like I have never seen her. It was over the top. For about an hour or so she was in total bliss, as if she finally allowed herself to let go and have fun for once. It was a really nice moment- Bittersweet though. I remember when we went to visit her in Greece last year, we went to the island of Skopolos and listened to an authentic greek band. She had some wine that night. She doesn’t drink much, so she had a buzz. But that was another rare moment when I saw her comfortable in her own skin and “happy”. Moving through this, I will try and remember that music is a good thing for her. She enjoys George Jones and sad country songs. I’ll try to stay away form the sad ones! After that hour, she seemed to have caught herself having fun and slipped back into her typical self.
