A few weeks after learning that the stereotactic radiotherapy had successfully reduced brain lesion number one, I suddenly developed a numb chin on the left side of my face. The numbness then spread to my left lower lip and gum.
This happened a few days before I was flying to Alice Springs for our trip to central Australia at the start of June. So I decided to just let it go and tell my doctor about it the following week when I got back from the trip.
I knew there were a couple of possible explanations for it. There might be a new lesion in my brain putting pressure on the nerve that feeds into that area of the face. There might be a new tumour in my jaw putting pressure on the nerve. At an outside chance, it could be a dentistry problem!
When we got back from central Australia, I had an MRI and it showed I had three new lesions on my brain, two very small ones and a larger (about 1cm) cystic lesion in my cerebellum. The annoying thing was none of them could be linked directly to the numbness in my face. However, my radiation oncologist said we could treat the three lesions and see if the numbness then went away. If it didn’t, then we could further investigate the cause.
The numbness isn’t painful, it’s just annoying. It’s like constantly feeling like you went to the dentist a few hours ago and the anaesthetic is wearing off. Fortunately, I’ve had no drooling or messy eating problems. Sometimes my lip gets very tingly and feels like it’s burning. I have to be careful not to accidentally bite into my lip because I can’t feel it properly. I feel like my face is doing weird spasms that make me look like Strop from The Paul Hogan Show, but I’m pretty sure my face looks normal. The worst thing is that it’s a constant reminder that something is wrong with me. While the rest of me has been feeling quite good, there is a weird thing happening on my face that I can feel all the time. It does not go away. It tells me I am sick. I don’t like it.
The three new lesions on my brain were treated with stereotactic radiosurgery five weeks ago. Radiosurgery is similar to radiotherapy but the dosage is much higher and more intensive. The radiosurgery takes longer than radiotherapy, but you don’t have to keep going back each day for treatment. All three lesions were treated in the one session, but I was on the machine for close to two hours instead of 15 minutes.
I used my mask that I had made earlier this year, but it was a little bit tighter because all these steroids I’ve been taking have given me lovely chipmunk cheeks. Before I went in for the session, I was given a sedative to help me stay still. The nurse told me beforehand to raise my arm at any stage if I needed a break. I thought there was no chance I would need a break. I’m good at lying still for a couple of hours. I think it’s my natural state.
However, once I was locked into the mask on the machine, I soon started to experience a lot of pain in the back of my head. The mesh mask felt like it was digging sharply into my scalp. I was in the process of losing my hair from my new chemotherapy regime, so I think my scalp was a bit sensitive at the time. I tried lying there and ignoring the pain, but after an hour I reluctantly raised my hand so I could get out of the mask and take a break. As soon as I raised my hand, the nurse and technicians raced into the room. I explained that the mask was painfully digging into the back of my head. They asked if I could stay in there for five more minutes as they just finished one of the lesions and then they would let me out before they set me up for the final one. They finished what they needed to do, then returned and let me out of the mask for a couple of minutes so I could get some relief. We then had to go through the process again of locking me into the mask and trying to find the most comfortable position so they could blast the final lesion. I thought I was more comfortable, but that lasted about five minutes into the last part of the session. Then the pain returned, but I just had to lie there and wait for them to finish.
I was told I could expect some headaches after radiosurgery and if I developed a fever or vomiting within 24-48 hours, I should call the nurse. The next day, I had a slight headache, took some tablets and went about my day as normal and met up with a friend at the park. The following day, I woke with a slight headache, took some tablets and went out for the day with friends. The next morning the headache was a bit worse, but I took some tablets and it got a bit better. By mid-morning, I started to feel like my balance was a bit off. I continued taking headache tablets for the rest of the day. It was manageable. That night, I was sitting on the couch when a massive sweep of nausea came over me. I sat there very still waiting for it to pass. I was determined not to throw up. I sat there for five to 10 minutes, fighting it off. And I won.
The following morning, the headache was much worse. It woke me up in the early hours of the morning so I got up and took some tablets, and then went back to sleep. I got up a few hours later and went to the kitchen to make myself some breakfast so I could take some more tablets. As I went to enter the kitchen, a wave of nausea hit me. I held on to the kitchen doorway, determined not to vomit. I looked up the stairs towards the bathroom. Would I make it up there if I was sick? I looked forward to the kitchen sink – maybe that was the easier option? No, that’s disgusting, I thought. I fought this last night. I can do this again. I have not thrown up from any treatment since I began two years ago. The chemotherapy never made me sick. I’m not about to give in now and start being sick. I stood in the doorway for several minutes waiting for the nausea to pass. Finally, I thought I could move again. I took one step forward and projectile vomited all over the kitchen floor. Twice. Game over. Marnie loses.
So began a delightful morning of being sick and having a severe headache. I rang my nurse at the radiation oncology unit and she spoke to my doctor who advised I should start back up on a higher dose of steroids. So I did and by the next day I was feeling much better. It appeared it was just some post-stereotactic radiosurgery swelling causing the problem so we just needed to manage the swelling with the steroids. After a few days, we started to reduce my dosage.
That’s what I was in the process of doing when I got sick in the Barossa. Now, it appears that the headaches, balance and double vision problems are not necessarily from reducing the steroid dosage too quickly, but because one of the lesions has continued to grow and there is a build-up of fluid that is putting pressure on parts of my brain. That, combined with the swelling from the stereotactic radiosurgery, is a problem that could become very serious (what the neurosurgeon called life-threatening) if we don’t take this cystic lesion out.
So that’s why I’m having brain surgery in the morning. We’ll get this little sucker out and I will start to feel better. I will be able to see properly with both eyes open again! I will hopefully get my balance back and the headaches will gradually go away as the brain swelling goes down.
I will get back to normal and once I am healed I can start chemotherapy again and we can concentrate on knocking out the tumours in my liver and lungs, which unfortunately continue to grow and get bigger. It’s not ideal to take a break from chemotherapy at the moment, but I have no choice. My brain takes priority right now and I can’t start chemo again until it is completely healed.