I debated whether or not to share this post. I tend to keep my ongoing health issues private with my family and the NF2Crew. I don't want to be the sick mom, the friend with a disease, the Deaf girl in the class. I am more than that. I am a wife and mother, a student, a writer, a runner, a friend and a daughter. I don't wake up everyday and think of myself as disabled. When I share about my journey with NF2 my intent is to inspire donations to CTF for a cure, share experiences with fellow NF2ers so they can get the help they need, and offer a blog where other people can become educated about the personal side of NF2. This blog is not for whining. There is no whining allowed. So, I debated whether or not to share this post...
Back in June of this year I had CyberKnife on a tumor in my lumbar spine at Stanford with Dr. Adler. On my last day of treatment I ran 3 miles, joined my husband back at the hotel, and had a nice glass of wine. As we made the long drive home I told Paul how incredible it is to treat a tumor on my spinal cord without major surgery and recovery. I assumed that was the extent of the experience, and came home to focus on running a marathon. Over the last 2 months I have had some ongoing pain and cramping in my lower back. My MRIs were reviewed, and no change in the tumor was noted. I carried on as usual, until over this last weekend. My lower spine has become so stiff, I was able to touch my toes a month ago, suddenly it was excruciating to bend over to wash my face. Lifting my legs to shave, carrying Mica, sitting up straight... one by one normal things became painful. I contacted my neurologist at Stanford and waited for a reply, which I knew would take time since it was the weekend. Today I woke up in considerable pain and planned to go to my general doctor for xrays to rule out an athletic injury. Then at about 10am I developed a horrible migraine. I was nauseous, dizzy, and my entire lower body felt like it was cramping inward. The pain radiated in shocks throughout my lower waist and upper legs. Friends took my kids, Paul came home and took me to the ER.
I just got home, the doctor in the ER convinced me to take darvocet for the pain, which obviously breaks my no pain medication rule. Pain medication is evil, I believe that pain should be dealt with to as much of an extent as possible. Today, the pain won. X rays ruled out athletic injury, and other testing ruled out kidney problems. Dr. Adler got in touch with us and said it sounds as though the tumor is swelling from the radiation. Sometimes, they swell larger before they shrink. I knew this was a possible side effect, I just didn't know how bad it was going to hurt. The tumor is most likely causing congestion in my spine. Tomorrow I am to see my regular doctor, and Dr. Adler will call and create a plan with him to deal with this. As of now the suggestions include a steroid shot into my spine or surgery to remove the tumor.
I'm home alone now, my skin is pasty and the pain is throbbing quietly, as though patiently waiting to break through the darvocet. My children are with friends, but my intelligent sensitive boy is already asking questions. He even asked his teacher at school. It breaks my heart to think of how I will care for them tomorrow. I don't want to be the mom who parks her kids in front of the TV while I sleep away the pain. So I wont. I still have a choice. I have finals next week, I will finish them. I will play board games in bed with the kids if I cannot walk around again. I will run Surf City in February, even if I have to hobble. I've had my eye on that medal for way to long to let some stupid tumor mess it up. These things may sound trivial, but they are the pieces that make up my life.