Frequently Asked Questions
Here they are! The questions most frequently asked, and therefore, frequently answered!
What and when was your diagnosis?
I was diagnosed with a type 2 astrocytoma in my right temporal lobe - brain cancer - April 27th, 2009. I'll never forget the date, because I had to make sure and write a blog post honoring my little brother on his 30th birthday (April 26th) before I went to the hospital for what seemed like a possible concussion. It's important to have priorities.
How did you discover your brain tumor?
I had a seizure while home alone April 24, 2009. I had been getting ready for bed, it was late, and I brushed my teeth and washed my face. Then suddenly, I found myself, 'coming to' at my desk, in front of my computer, which had been shut down already. "Huh - I thought I already went to bed," I thought, and went to bed. I had no history of fainting or seizures.
The next morning I had a headache. And a fat lip. And when I got up to pee, I noticed the bathroom rug was all wadded up in the middle of the bathroom floor. Something wasn't normal, but maybe I just tripped and fell in the night and hit my head and didn't remember. When Boyfriend returned home later that night, and I told him what happened. The headache persisted.
The following morning the headache was worse. We talked about going to the ER to see if I had a concussion, but I didn't have insurance and we were broke. I'd had a head injury before - I knew they'd want to do a scan - cha-ching! So I decided to take a nap. After I laid down, the left side of my body began to tingle, my ears began to ring and I detected a horrible taste in my mouth. (I now refer to these feelings as my 'conscious seizures'.) I was scared, so I called for Boyfriend, and described what was happening. It was very uncomfortable, something was definitely wrong with me. It was time to go.
Boyfriend called his boss about getting his payment for work early so that we could go to the ER. His boss said, "You just take her, and I'll take care of it."
So we went. As soon as we got to the ER, and the words "hit my head" escaped my mouth, I was put in a neck brace and strapped to a gurney. Here we go, I thought. I had a CT scan and was brought back to a waiting room with Boyfriend. I had another 'pins and needles" episode, telling Boyfriend, "It's happening again, I'm having that feeling again!" He called the nurse and she gave me an anti-seizure drug. She explained to me that what I was feeling was a mini-seizure, that I'd probably had a grand mal seizure at home two days ago and hit my head.
Then the doctor came in. "We looked at your scan. I'm so sorry, but you have a very large tumor in the right side of your brain. That is probably what is causing the seizures. But you need to go to the other hospital for observation and to have an MRI."
Boyfriend was holding my hand, so I squeezed it, looked at him and the tears started. "I'm so sorry," was all I could think to say.
His face was already even with mine, his eyes locked on my teary ones, "We'll get through this, don't worry."
One wipe with the back of my hand, and the tears were gone. Of course we would.
Have you pursued treatment? What was the outcome?
I underwent chemotherapy (Temodar) and radiation therapy last fall (October 6 through November 23, 2009) for seven weeks. It was very successful and the tumor shrunk about 50% in volume, so we were thrilled. I am now on a regimen of chemo for five days per month for the next year (through January of 2011), to keep knocking the tumor back in case it tries to grow again. We're also hoping that the chemo will continue to kill off the tumor. I have an MRI every two months to keep track of the progress. After one year of chemo, my oncologist and I will decide whether a second year would help or be necessary. You don't see much online activity from Girlbert during chemo weeks!
Why did you wait so long to pursue treatment?
Initially, the anti-seizure drugs were controlling the seizures, and I was in a wait-and-see holding pattern for about six months. My doctors and I agreed that the tumor didn't just appear there yesterday, it was slow-growing and I had time to weigh my options. I wanted to pursue alternative therapies: neuro-acupuncture, Reiki, meditation, energy work, and a raw food diet. Then in September 2009, the tumor seemed to be growing and I was having headaches and the seizures increased to several per week. When I ended up in the hospital with the seizure that wouldn't stop, I knew it was time to pursue western medical treatments. My doctors were all very supportive of my pursuit of other options, but they were telling me that I was out of time. So I listened to them.
What's your prognosis?
My prognosis is that this tumor is probably something I will have to deal with, in some form or another, for the rest of my life. It is not an aggressively growing tumor, and the radiation and chemo treatment I underwent last fall were sucessful in that they shrunk the tumor by about 50% in volume! My hope is to continue to shrink it, using my mind, my health, energy, and medicine, until it is not affecting my daily life.
What about surgery?
As I understand it, surgery is not a practical option at this point because there is significant risk of stroke because of all of the blood vessels running through the tumor. The tumor is still fairly large (6cm X 3cm diameter), and surgically removing it isn't worth the risk at this time. If the tumor becomes more aggressive or starts to grow, affecting my quality of life, it would be worth revisiting, however.
How do you keep tabs on the tumor?
I have an MRI every two months to keep track of the tumor. My last MRI was May 4 and it showed the tumor holding at the same size as the previous photo shoot. Good news, considering it could be trying to grow back, now that there's more room in my head these days. Time to grow some more brain cells! But this means the chemo seems to be doing the trick holding the tumor back.
Are you still having seizures?
I am on the maximum dose of my anti-seizure medication, and my last seizure was almost a month ago. Since my radiation stopped, I've been having about one seizure a month. My goal is to go six months without a seizure so that I can drive again. Month one... UPDATE - June 13, 2010: The Ninja Neurologist has cleared me to drive! He and I both agree that because I haven't had an unconscious seizure since October 2009, I meet the requirements. He and I have filled out the required DMV paperwork and are waiting to hear back. I'll keep you posted!
When do you stop taking the anti-seizure medication?
I will probably be on anti-seizure medication for the rest of my life. As long as I have the tumor I have the risk of seizure. And once you're on these meds, coming off of them is likely to cause an even higher likelihood of seizures. It's no picnic, my doc tells me I lose about 5 IQ points for every 500mg pill I take each day (I take 6 a day now), so I'm definitely not as sharp as I once was. But the alternative is seizing constantly, so I'm actually onboard with the medication. For now. I'd like to get back to driving, and a semi-normal life at some point...
Please tell me you're not still waiting on Medi-Cal.
Okay! I was awarded Medi-Cal for June 2009 onward just last month - a year after my diagnosis. As of today's date, I'm still waiting for a judge's decision on whether or not I can receive retroactive benefits for April and May of 2009. Once I get that, I'm good to go! UPDATE - June 13, 2010: I have received all my Medi-Cal approvals and am finally able to get all of my providers paid! Whew - 14 months later!
Any tips for those newly diagnosed with cancer?
Enlist help. Tell everyone. Why hide it? Get used to using your 'cancer card' when you need it, because believe me, you will need it! You never know what you'll uncover when you let yourself to be vulnerable and allow people to help you.
Listen to your doctors. Take notes. Bring someone to your appointments in case of information overload. Get a second opinion. Do your own research, yes, but as my Ninja Neurologist put it, "Be careful of those damn patient blogs!" Those people aren't experts, just because they have cancer and they're writing online. Ahem...
Utilize support groups, both local and online. CrazySexyCancer.com and PlanetCancer.org are good online social networking sites. The hospital or local cancer center should know of some local support groups or can put you in touch with other patients or cancer survivors. The Cancer Center of Santa Barbara is a wonderful resource, and even though my radiation treatment with them is finished, I continue to utilize their classes and support groups.
Realize the gifts you are receiving as a result of your diagnosis. Take care of your body - feed it real food, exercise and stay in shape. Yoga. Prepare it for the onslaught of drugs that chemo treatment requires, should you need to pursue that. Take care of your spirit - look for spiritual guidance. Learn to meditate. Listen to how you feel. Journaling helps me a lot - sometimes I don't know what I'm feeling until I write it down.
Take the time to do the things you love. Be with the people you love. And give love - the more you give, the more you get back!
Are you still moving to Marin County?
Someday, probably. But not for now. Once I decided to pursue treatment in Santa Barbara, I knew we'd be here for a while, now it's at least another year. I'm in love with my doctors - they're amazing. And the Cancer Center of Santa Barbara has been so good to me, I can't imagine finding the level of care and service anywhere else. Moving out of Santa Barbara county would also require me to start over with Medi-Cal in a different county, which I'm so not up for!
So we will stay. In our little cabin in the woods in the hills up above Santa Barbara. Surrounded by nature and all the things we love. We also find ourselves surrounded by the most supportive group of friends right here, leaving would be too much for my heart to bear right now.
How are you doing now?
I'm doing well, thank you. I'm doing my best to keep moving forward, although some days it feels like one step forward, two steps back. Some weeks are constant emotional roller-coasters, but Boyfriend and I are both committed to working through our struggles together. We're both learning, and realize the extreme circumstances in which we sometimes find ourselves serve a purpose in teaching us how to be better. With each other. With others. With ourselves.
I've been awarded Social Security Disability, and Boyfriend seems to have a bit of work this year, so we're hopeful that this year will be a little easier in terms of making ends meet. That's a big load off... Stress is a major factor in my daily pursuit of maximum health.
Other than that, I'm just a girl with a brain tumor. Who counts her brain tumor as one of the greatest gifts she's ever been given, not that she would wish it on any one else. Who appreciates life more than she used to. Who has more to grateful for than she ever thought possible.
Are there any questions that remain unanswered? Please let me know if you are not thoroughly satisfied by this list. Thanks!