Update as of April 2016
It's been four years since my brain cancer diagnosis. I've now officially made it past the "typical" lifespan of a brain cancer patient. MRIs continue to be stable and we continue to be thankful as we trust in God's healing power.
Update as of August 2013
Anna Alma Thomas just turned one year old. She is absolutely uninterested in walking, using a sippy cup or anything else that one associates with toddler-dom. Which is fine by me - I'd keep her a baby forever and ever if I could (not really). She is a dream baby, and I've loved watching her grow.
After Annie was born, I began radiation therapy which basically involved getting fit for a scary mask and going to the hospital 5 days a week for 7 weeks and having lasers shot at my head. It's completely painless but not without side effects. I also began a chemo regimen at that time that I just finished this past spring. The effect of those therapies was draining - nausea, extreme fatigue, digestive issues, basically feeling pregnant again.
Over the past few weeks, I have regained strength and rest and am feeling like myself again. We've had great nannies, and my mom was here a ton when I was going through everything, and we still use babysitters frequently to give us time to adjust and slow down, and I need an MRI every three months to monitor my brain.
So far, every MRI has come back stable, and there have been no changes to indicate reason for concern. My doctors have been encouraging and optimistic that I should have some good time to enjoy before recurrence. So, yay! I continue to ask God for years and years to enjoy my kids and my husband and all the blessings He's given me.
Update as of June 2012
If you want the history, read on below, but I figured it's time to sum up an update on the brain tumor/pregnancy sitch. First of all, I did have a craniotomy (that's medical language for surgery where they cut your skull open and then put it back) in February 2012. It was declared an "almost complete resection," which is about as good as it can get with my crazy kind of tumor which is called an Anaplastic Astrocytoma. You can google it if you want to, but I don't. Anyway, that just means they got most of it, but there are probably evil little tumor cells lurking about it my brain. Pathology indicated that my tumor is a Grade 3. That's not the worst it could be (that would be Grade 4), but it's not good. Basically, these tumors are treatable but not curable. Radiation and chemo are important parts of the treatment process, but they have not been shown to shrink the tumor, only slow its recurrence.
Statistics say this thing will come back, no matter what we do. But, we are still going to do something. We elected to hold off on radiation therapy until after the baby is born (assuming MRIs stayed clear, which they have). Really, no one knows the affect of radiation on babies in utero, but hearing words like "Chernobyl" and "Hiroshima" gave us some amount of pause.
So, we've been waiting. Growing this baby and getting monthly MRIs to keep track of what's happening in my brain. The good news is that nothing's happening. There's some swelling around where the tumor was, but it's not causing any significant neurological issues. It seems miraculous that our baby has been unaffected by the surgery, the stress and the drama, but at this point it looks like she can hang tight until she's full-term.
The plan is to keep Baby Annie growing, deliver her at 39 weeks, and then as soon as possible start a combination of radiation and chemotherapy. The most certain side effect of treatment is fatigue, but let's be honest, I've had that since the day we saw the little pink plus sign on the pregnancy test.
That's the update. Stay tuned for adorable baby pictures, coming late July 2012.
I have been having strange "episodes" going back at least until the summer of 2011. These episodes aren't painful or especially scary, just very weird. I get a strange taste in my throat, have trouble focusing, experience a squeezing sensation in my throat, and often have some tingling in my hands and/or feet. These episodes would only last for about a minute and might happen once a week or so, so it certainly didn't seem like anything to rush to the doctor about.
Over the last months, the symptoms seemed a little more intense and the episodes were beginning to happen a lot more often - sometimes once a day. I never lost consciousness or had trouble breathing, but I decided it was worth mentioning to the doctor. By the time I was able to get in to see him, we also discovered that we were expecting a new baby!
The baby news complicated things a bit because logical next steps (MRI) aren't always deemed safe for pregnant women. We ended up finding a great neurologist, who, along with my OB, encouraged me to have an MRI anyway, as they believed the risks of not knowing what was going on were greater than potential risks to the pregnancy. At this point, we believed that epilepsy and MS were likely causes and we were preparing ourselves for that kind of news.
On Wednesday, January 25, we had an MRI. Less than an hour later, we received a call to get to the hospital immediately because the scan showed a "lesion" on my brain that needed investigation. Upon arrival at the hospital, we were shocked to see the size of the tumor - about 5-7 cm.
I am now under the care of a neurologist, neurosurgeon, obstetricians, and perinatologists (high-risk pregnancy docs). Together, they've presented me with a few options, but the bottom line is that the tumor needs to come out. While a major surgery obviously poses some risk to the baby, the perinatal team is confident that now is the safest time for the baby to go through this.
At this point, we are pursuing surgery sooner rather than later and are really just waiting on scheduling from the surgeon's office. The tumor does not appear to be aggressive or highly malignant, but it also doesn't appear specifically benign. The surgeon believes it's "complicated," but thinks it to be a "low-grade" brain tumor (low-grade is a good thing).
Until they get it out and run pathology, they won't know if it will require further treatment after surgery. The surgeon is also not confident he will be able to get the entire thing, as there doesn't appear to be a defined line between good and bad.
So, for now, we're waiting, hoping, trusting and soaking up time with our kiddos. Once we get to surgery, life will become a lot more complicated, but we're trying to keep things "normal" in the meantime!