How I'm doing three months after my meningioma diagnosis and surgery.
Back in August when I wrote the first of my brain surgery posts, I had every intention of writing a second one within a week or two so I could end the post with the news of how wonderfully I was doing. That I was feeling great. I had all the energy in the world. As if. (And the picture above is one day post op. Where it says, “Acq” is where the meningioma was removed. Pretty wild, eh?!)
Recovery is the hardest part
For me, the surgery and hospital stay was the easiest part of having a brain tumor. Altogether my symptoms had only been going on since April, they were minor and I only had one grand mal seizure. I’m part of a wonderful online support group, Meningioma Mommas and am frequently reading other members’ stories on their private Facebook group. Other people with meningiomas had symptoms for years (depression, motor skill problems, loss of hearing and vision, etc.). Their surgeries were much more risky and the side affects they’ve suffered since have been much more severe. I realize how lucky I am. Still, I know for me, it’s been the recovery stage that’s been the most challenging.
First, there was the recovery from the actual surgery. My arms were black and blue from the numerous times I was stuck for IVs and blood samples in both arms. I was on big doses of steroids to combat brain swelling both at the hospital and at home. In fact, I had to go back to the hospital for more IV steroids because the dosage they had prescribed for me to take at home wasn’t high enough and I was experiencing numbness – which was a “seizure” symptom – on my right side. I have a funny reaction to steroids, too. They make me itchy and very warm, too, so I was a sweaty mess at night and had to take Benadryl just to get to sleep. Luckily for me, the nurses at Athens Regional were very nice about my requests for additional medicines like Benadryl, sleeping pills, and caffeinated beverages!
My doctors and nurses were also great about pain management. There was even a sign on the wall of my hospital room about letting your nurse know if you need something for the pain. Such a change from when I was 19, had my tonsils removed, and was denied additional pain medicine because “we don’t want you to become addicted.”
What really hurt was the constant headache. When I realized the pain meds didn’t help (and only messed up my tummy) I stopped taking them. So, I only had a combination of anti-seizure meds and ibuprofen to manage them, though caffeine and making sure I was hydrated, resting, and eating properly helped, too. Still there were days when I had headaches all day long no matter what I did.
The benefits of anti-seizure medication
I’m now on anti-seizure medication and will be for at least six to 12 months. The first medication they tried wasn’t doing the trick for the headaches, so they put me on Topamax, which is something also used for migraines. It seems to work pretty well, but it has some interesting side affects. The negatives ones are that my feet are hot and my extremities and face have a “pins and needles” fuzzy feeling most of the time.
The positive side effect is that Topamax suppresses your appetite and in fact, has recently been approved as a weight loss drug by the FDA. For me, this has been a good thing. When I was on steroids, I gained 10 pounds like that. It was scary how quickly I ballooned up! Since I’ve been taking Topamax, I lost the 10 pounds I gained from the steroids, plus an additional 10 pounds that I needed to lose. I hope to lose another 15 pounds. I feel my crazy food cravings have gone away and feel like someone who can just have a few bites of something and go, “oh that’s really good!” and put the fork down. Before I was like a bottomless pit and never felt full. But part of me wonders if that’s the drug or the removal of the tumor. (When you have a tumor removed, you wonder if certain things in the past were caused by it.)
The tale of the sad, weeping incision
My other big problem was my incision. Ten days after my surgery, my staples were removed and I could start washing my hair again. Happy days! Maybe a week to 10 days after that, I noticed that one end of the incision, then the other, started to weep and was a little bloody. At first, it wasn’t a big deal – sort of like when you get a scraped up knee and the scab doesn’t quite heal. But it kept getting worse to the point where I’d bend over and the fluid would run down my forehead or neck. Off to my neurosurgeon’s office I went. The physician’s assistant (PA) prescribed an antibiotic as they can’t really put anything on it. She told me to cover it with gauze at night and wear a knit cap. Luckily, my daughter, Lucie, found a couple of cute, pink tuques in her collection. My sister also ordered a couple of special hats for me to wear both to bed and while I was out to cover the lovely haircut I got at the hospital.
It was a month long process, and took several rounds of two different types of antibiotics to get my incision completely healed. I literally was seeing Dr. Barnes or his PA every week. I also went for a CT scan to see if my brain was swollen. It was, but wasn’t pushing up against the skull flap (the piece of skull they put back in). The titanium plates and screws weren’t loose (no, I don’t have a screw loose – well, not literally ) and the fluid coming out was from my scalp not from my skull. All good news.
Asking for help – and thanking those who did!
Even though I was pretty damn fuzzy when I got home from the hospital, I managed to keep track of all my meds, the health insurance, our bills, and work. I think it really helped me to have something to focus on rather than to sit around thinking that I feel like crap. It also helped me use my noodle and challenge myself by going downstairs to my office to work. The folks at the insurance company were very helpful and even had a case worker call me several times to go over any questions I had about my care. She emailed referrals, and explained how I could get one of my medications for free since my husband’s employer’s parent company is the manufacturer.
I also had a lot of help at home. Luckily, my mother-in-law was here when this all went down and was able to stay another month. She was a great help with laundry, cleaning up, and driving the kids around.
My husband, Paul, took over a lot of my duties and GOT IT DONE. He took the kids back to school shopping and got them ready for school in the morning. After working all day, he cooked up some amazing gourmet meals. He also went to Costco and stocked up on so many essentials that we’re ready for the zombie apocalypse and an outer space alien takeover. He also went to back to school night, and dealt with that craziness, while I stayed home in bed. The kids have been reluctant helpers in the kitchen and around the house, but they’ve pulled their weight, too. (Though they’re still terrible about taking Nellie out for a walk.)
Our neighbors have also been amazing. My one neighbor, Sue, is acting as the dispatch operator. I call her when the kids or I need a ride and she calls around to the neighbors and make arrangements. Then there’s our school community. Nathan’s gotten rides from football practice all season, and Lucie’s now getting them from a fellow student’s mom after chorus. I even have a new friend in town, Kelly, who I only met once at a concert, who took me to get my hair done. It’s amazing how nice people have been since this has happened – all we had to do is ask!
Of course, I have my friends and family all over the country and the world who I talk to on the phone, via email and text, and online. They have been my lifeline and kept me from turning into one of those crazy ladies who talk to the dog all day long. And speaking of the dog, Nellie’s presence has been therapeutic as well. She’s a good pooch to take a nap with or just watch movies in bed in the afternoons.
And a big shout out to my work colleagues, clients and partners who’ve been so understanding during this time. Many have sent cards, gifts and flowers and I was touched by the outpouring of support, understanding about missed deadlines, well wishes, and their generosity with guest posts here at This Mama Cooks!
Memory and fatigue
So besides the side effects of the meds, the two biggest problems have been memory and fatigue. Memory has been interesting. I’m still struggling that I lost a complete day in the ER and my time in the hospital is still fuzzy. It took me a long time to figure out when I talked to my mom, my sister and my husband before and after the surgery. In fact, if it wasn’t for Paul helping me, I really couldn’t have put the timeline together.
Then there’s what I call, “pregnancy brain,” because it’s something I had when I was pregnant with both kids. I often struggle for words when I’m talking. It’s like I can see the word in my brain. I can describe it using synonyms. But I can’t put my finger on the exact word I want to use. Then it’ll come to me – three hours later when I’m doing something else. That’s slowly getting better, but boy was it bad the first month or two.
Fatigue has been a huge problem. At the beginning, I’d wake up and sit in bed thinking, “Should I get up and have breakfast or take a shower? I don’t have the energy to do both. I really need to take a shower though. But I really should eat, too.” That kind of fatigue can be a killer. Nowadays, most mornings if I’m the one getting up with the kids at 6 am, I have enough energy to stay awake until Nathan leaves at 7:45 and then I go back to bed and have a two hour nap with the dog before I go downstairs to my office and work.
Today was an exception – no nap – and I wonder if I’ll pay for it tomorrow. I find that there’s often a cause and effect with fatigue. If I do too much one day, I pay for it the next, so I try to take it easy by doing something quiet in the afternoons or weekends like reading or watching football on TV. Since I’m also under virtual house arrest since I’m not allowed to drive, I’m pretty much stuck at home unless Paul takes me somewhere. It’s probably a good thing since when I do go out, I get a headache pretty quickly. I did manage to go to a blogging conference in Atlanta a couple of weeks ago. (I took the bus from Athens and then a taxi from the Metra to the hotel.) It was wonderful to see friends and talk with them about social media stuff, but I could tell that my energy levels and focus was not where they normally would be.
The good out of all of this
I believe there’s always a silver lining to every bad situation. My health crisis has brought my husband and I closer. We’ve always had a good relationship, but we appreciate each other even more now. While it worried the heck out of my mom, I know my hospitalization and recovery helped me relate more to what she went through with her own health crisis a few years ago. And it has brought my sister, Michèle and I even closer. On my behalf, Michèle will be running the New York City Marathon in November to raise money for the Brain Tumor Foundation.
October 12 will be the three month anniversary of my meningioma diagnosis and October 14 the three month anniversary of the surgery. I have to say I think I’m doing pretty darn good even though I touch my scar and still can’t believe it happened. It’s so damn weird!
I don’t see my neurologist until February and I don’t see my neurosurgeon until April. I can start driving again (legally) in January though if I had to evacuate the neighborhood because there was a chemical spill on the highway, I’m perfectly capable of getting the kids and the dog in the car and driving away – so there. Still, I think it’s a good thing to take it easy and not push it. It’s so easy for just about anything to trigger a headache – forgetting to take my medication in a timely fashion, skipping a meal, not sleeping well, and so on. It’s just about taking it one day at a time and not pushing it until I’m ready.