Things I do not say
I have been reflecting for a while on the things that I do not blog about. I’ve wanted to blog, but I could not. I could not share my fear and anxiety with my family. They had enough happening. They did not need my issues, especially if they turned out to be non-issues, added to their plate of concern. And so I did not blog. I waited to blog. And now that I know it is a non-issue, I have decided to tell this story in reverse chronological order – to reduce the amount of stress and anxiety that goes into reading it – but I also think the story is important as it help to describe some of the additional stresses that living with a breast cancer diagnosis entails.
Today I got a call from my doctor’s nurse practitioner. I was surprised at how quickly the call came. I had an MRI of my brain only last night (at 7:30pm), so to get a call before noon the next day was pretty amazing. He was calling to tell me that the MRI was normal. There were NO signs of metastatic breast cancer. I could go away next week without that worry hanging over my head (yay). At hearing the words I cried. I had been holding in (mostly but not completely) a lot of fear and anxiety over this.
Last week I saw the neuro oncologist for the first time. It took more than a week to get an appointment to see her. I was there on a referral from my regular oncologist. I described my symptoms and she suggested that a brain MRI was in order. They did some neuro tests and some blood pressure tests and validated that my symptoms did not appear to be heart or blood pressure related. The neuro exam was mostly inconclusive. There were no give away symptoms. Because of my history of breast cancer, she wanted to do an MRI. I knew what this meant. The words cancer were not mentioned in the appointment. I did not want to ask because I did not want to hear the answer. I knew that although the neuro exam demonstrated no signs of metastasis they also could not be ruled out. That was the thing, she was completely non-comital. And so I called and booked an MRI.
The week before I sent a message off to my oncologist. For months I’ve been having this weird thing happen where my ears felt like they needed to pop, only they didn’t. It was getting worse. In addition I had a couple of spells that kind of scared me where I had the head full sensation and a little dizziness and disorientation. I didn’t like it. I sent the message and the response I got back was “would you mind seeing a neuro oncologist?”. This scared me. It was not seeing a neurologist, rather it was a neuro oncologist, someone who specializes in brain cancer.
Before that, I had complained about the symptoms to my primary care doctor. I had figured it was all blood pressure related, but my blood pressure was finally under control and the symptoms persisted. She ordered a head CT. I did that. It came back clear. Brain bleeds associated with high blood pressure had been ruled out. The next step from her perspective was a consult with either an ear-nose-throat person or a neurologist.
And so, that is where my head has been the last month or so. We don’t know what the cause of my little ear popping episodes are, but we know that I don’t have cancer in my brain (yay). Although they are a little annoying, they are not specifically problematic. I do want to get to the bottom of it somehow – it might be a drug interaction or side effect given all the meds I’m on. Who knows. I see the neuro oncologist on Monday to see what she has to say about the brain MRI. The good thing is that she can look at it directly and see if there is anything she thinks might be related. She would also be familiar with any potential celiac side effects in addition to the cancer issues.
Before I got the phone call, I decided to take today off and drive up to Big Basin. I got the call while having lunch with my friend Lori before making my way up to Big Basin. I decided that I needed to go anyways – I just needed to spend a little time in the presence of ancient trees. I started this blog post from the table in the feature image. I would loved to have finished it up there but the mosquitoes were too bad. I need to plan better next time.
On the drive home I found myself asking what can I learn from this experience? What is the thing that I should be taking away every time this happens as it is bound to happen again. One of the things that happens when I end up in crisis mode is that I start to re-visit what I’m doing, what I enjoy doing, what I want to keep doing. I find myself asking, is this what I want to be doing if I only have 5 years to live? 20 years? Honestly, I cannot see 20 years out. I’m struggling with planning things that are 3-months out. Five years seems like forever right now. But living in the moment is also not a healthy way to live. I cannot live for only the moment. I need to have something to look forward to. I need to feel that big tasks (marathon length tasks like the PhD) are worth doing. Living only for today doesn’t allow me to think or plan for the future, and that isn’t a healthy way to make your way through life – you need a balance of both forward thinking and being in the present moment. And so, although my future is very uncertain, it doesn’t look like I’m on deaths door just yet. Now that I know my brain is “healthy” I should be able to kick it back into gear and get some work done. We’ll see about that!