When Nick was a pre-schooler, I remember reading a specific book with him that viewed many English colloquialisms through the literal mind of a child. The main character was a little boy who was very concerned when his father expressed that purchasing an item had “cost him an arm and a leg.” The boy imagined his father with only one arm and one leg. He was very confused when his mother told him a secret and then said “don’t spill the beans.” Of course the boy imagined tipping over a jar filled with beans. It was a wonderful book and I doubt Nick, at the age of three or four could truly appreciate it’s humor. However, I found it very entertaining………at least the first 40 or so times I read it to him.
I remember a specific colloquialism that always confused me when I was growing up. I didn’t understand the meaning of “waiting for the other shoe to drop.” Of course I quickly learned that it meant the anticipation of a bad situation getting worse. Today, I feel like I understand it on a completely different level. I’m afraid when it comes to my health, the other shoe has dropped.
It started on the evening of August 31st. I came home with a bad headache. I didn’t think much of it until it woke me up in the middle of the night. For me, the “middle of the night” means about 11 pm. The pain was intense. I tried switching positions, getting a drink and taking some Tylenol. Nothing worked. I couldn’t sleep and the pain was bad. I began to feel nauseous. I reached for my stronger pain meds and eventually fell asleep. I woke up again around 3 am with the same pain. I decided not to take more pain meds as the alarm was only 2 hours away.
Standing up and moving around made the pain slightly more bearable on Friday morning. I went to work but knew I needed to call the doctor as soon as possible. I taught a class and then called on my break. I described my symptoms…….debilitating headache, slightly flu like feeling, and a sore bump on the top of my head. The bump has actually been present since Spring, however, the soreness seemed to come and go and the bump was hardly even noticeable to anyone but me. Remember my main focus for the past 8 months has been the pain in my legs. My oncologist was not in that day, so the nurse had me see Dr. S. He is the one I had seen this time last year while Dr. L. was on maternity leave.
Mark and I spent about 15 minutes with Dr. S. kicking around the possibilities of what could be causing my pain. The obvious first choice when you’re sitting in an oncologist’s office is cancer. But, Dr. S. examined the area of concern and really thought it was unremarkable. He said skull metastases usually were more pronounced and skin metastases usually meant some discoloration. An infection seemed unlikely but a possible reappearance of shingles wasn’t ruled out. Bottom line, we needed to see what was going on inside my head so he sent me downstairs for a CT Scan. I was very lucky they were able to squeeze me in on a Friday before a three day weekend.
The scan was a horrible experience despite having taken pain meds right before it. It took four attempts to get into a vein since the first three veins blew up. I now look like a drug addict, but the scan did happen. We were sent back upstairs to oncology and told that Dr. S. would meet with us when he got the results. We ate lunch and headed back to oncology. I think we waited about an hour when Dr. S. appeared and we followed him back to a vacant room.
The CT scan revealed a 7.5 centimeter tumor on my skull and dura. The dura is the protective layer between the skull and brain. In the world of cancer, 7.5 centimeters is pretty big! Tumors of that size do not just appear overnight. I asked why the tumor would not have shown up on the PET/CT scan I had on July 31st. Turns out that the scan on the 31st only went to about my chin. Yeah, I was shocked by that. I really thought my head was part of the scan.
Dr. S. said that I needed to be seen fairly quickly in radiation oncology as the tumor is close to some important blood vessels and of course the size is of concern as well. It’s hard to describe the shock. After dealing with this crappy diagnosis for over 5 years, I really felt like I was prepared for anything. Each and every scan I prepare to hear that the cancer has spread to my liver or lungs. The brain is always a concern as well, but it’s less common than other organs. Dr. S. made it clear that they do not believe this is in my brain. It’s on/under my skull. While that is a relief, I still feel like I was caught off guard!
So it’s back to radiation. The new meds I’ve started will hopefully begin to fight the cancer systemically, but they usually take about six weeks to really build up in your system and begin doing their job. Dr. S. said that we really can’t wait that long.
I’m not a radiation newbie, but, radiation to the head can be a little more difficult than radiation to other areas. We met with a radiation oncologist, also a Dr. S. on Thursday September 7th. He laid out the options, even though I knew what I wanted to do. I just can’t risk being in that kind of pain again if it can be avoided. So, I made arrangements to go in the next day for a simulation and to have a mask made. The mask is necessary to hold your head immobile while they deliver the radiation.
Dr. S. is supposed to call on Tuesday and give me a start date and time for the actual radiation. It is likely to be 10 treatments. Side effects are mainly scalp irritation, fatigue, and hair loss. He seemed nervous to mention the hair loss, but in the large scheme of things, that’s the least of my worries. I just want to get this done and kill the tumor on my head. I was also sent for a brain MRI, just to confirm that the cancer was indeed on the skull and not in the brain. The MRI confirmed this.
Perhaps I have dodged yet another bullet, but after 5 1/2 years of dealing with this diagnosis, I do feel like the other shoe has dropped. I think it’s obvious that the cancer can be aggressive when it wants to be and grow fairly quickly if left unchecked. I’m still in a bit of shock over this. One minute you think it’s all under control and you start new meds with the hope of even further control, the next you’re being rushed into radiation to try and beat it back before it enters your brain! I can only describe it as absolutely shocking and surreal.
I’m going to try and work through radiation. I will probably do better and time will go faster. But I think I do have to think long and hard about continuing to teach after this year. I hate to give it up. It’s so much a part of my identity and I’m not sure what I will do otherwise. But, my cancer patient status in and of itself is slowly becoming a full time job. I also think that perhaps with less stress, maybe my time on earth can be extended a bit. No decisions have been made and I’m determined to at least finish out this school year.
I will keep everyone up to date on how radiation goes and I’ll be sure to post a picture of myself rocking the bald look!