This being the month of my ‘mastectoversary,’ I’m hyper-aware of the changes that have occurred to my body and psyche since I was kidnapped by The Guys In The White Van. Some of these changes, like spidey senses and being more sensitive to the pain of others, are positive outcomes from a terrible health sentence. Others, like horrible night sweats and an increase in anxious moments, are awful, constant reminders that I am not the same person I was before I picked up the keys to my timeshare. A constant theme running through my private thoughts, the ones I don’t even share with The Internet, is that my life is like one of those rooms from the Batman series from the 1960s, with walls that close in ever so slowly…picking up in speed and rate from time to time, corresponding to the type of medical news I’ve been given. ‘Just’ a sinus infection? Walls close in slowly. Bronchitis? A little faster. Breast Cancer? A lot faster. You get the picture.
Even though my breast surgeon assures me that I have no evidence of breast tissue to become cancerfied, I am still watching the walls close in on me. It isn’t coming from any evidence of metastatic disease (but I am laden with many precancerous skin issues that cause the walls to move faster or slower, depending on how itchy I am). Instead, the walls are closing in faster than usual because of a ‘leftover’ of my cancer treatment–a degeneration of my spine, both cervical and lumbar.
All of my treatment was surgical. Remove breasts, remove ovaries, tubes, and uterus. Remove any cancerous lesions of the skin. All chopped up? Excellent, go on about your way, we’ll see you in a year. Even though I did not suffer through the torment of chemo or the burning of radiation, my treatment choice still leaves remnants that impact my ability to function on a day to day basis. Since this time last year, I have had a worsening of degenerative disk disease in my odontoid process, C1/C2 cervical spine. What is that? Take your hand. Put it on the base of your skull on the left side–where your skull meets your neck. This part of me is becoming Swiss cheese. Your odontoid is the peg that keeps your head on your spine. Mine looks like a mouse has been nibbling at it.
When I touch this side of my skull, I can see the walls moving in faster. I’m in constant, stabbing pain on that side when I try to type too long, drive too long, sit too long, etc., leaving me unable to lift my arms very well. I also have degeneration in my L2/L3 that, in the words of a neurosurgeon, is “very, very bad.” Combine that with the broken ankle that happened just from walking and the ‘Swiss cheese’ appearance of my cervical spine, and it is clear the walls are moving closer. This has gotten considerably worse in just the past few months, however not one doctor can tell me why. I have been bounced from four different ‘experts,’ all freaked out at my CT scan. The last one, so very tactfully said, “Who told you you don’t need surgery? Well, if you have severe pain, or start peeing or pooping yourself, get to the ER. I can’t do anything for you.”
Seriously? Now THAT is some fine healing. Not one of my medical team can tell me WHY this degeneration is happening at such an alarming rate. Yes, as the medical ‘experts’ tell me, it is a result of my ovaries being bye-bye. It runs in my family, sure, but why so much just since May? Is it because of the size of my implants? Because of the silicone? Is it, like everyone has been telling me since I was 13, because I don’t eat meat? Not one doctor is willing to tell me why this is happening, just that it isn’t metastatic. In fact, my medical oncologist said, “I think there is something really, really wrong with you, but it isn’t cancer, so I can’t help you.” My neurosurgeon kicks me to the spine doctor, who throws me to the pain doctor, who asks why I am not at the neurosurgeon, on the operating table. Combine that with being told the changes to my bones were metastatic four times, then, OOOPS….not metastatic, and you see the walls closing in just a little bit faster than usual.
I have been researching rock star medical teams in my area, but I’m a little overwhelmed. Where do I begin? The reason for the degeneration? The degeneration itself? The pain? And why don’t I have a medical person coordinating my care? I am an educated self-starter who knows how to research. I can’t imagine being in my place and not knowing what I know–the walls would close in faster still!
I’m putting this out there in hopes someone will read this blog and tell me who I should see about my bone degeneration. No one wants to help me, and I don’t know where to begin. I’m having an increase of disturbing symptoms, like dropping things and tripping. I DO have an appointment August 31 with a ‘rock star,’ that will perhaps be able to give me information, and I’m going to force my DEXA scan on my ankle doctor when I see her this morning. She has to be able to tell me why a 47 year old’s ankle would just snap in the middle of the street when wearing Merrells. Cute Merrells.
In the mean time, I feel like I’m in that room with Batman and Robin, watching the walls of room close in. So far, the room is still fairly large, but every time I drop a glass or fall over nothing, the walls inch closer. I have a baseball bat that I can use to keep the walls from totally crushing me, just like Robin did, but let’s not let it get that close. There is no Alfred to get me out of this mess.