Has it really been a month since this surreal ‘dream’ started? Tell me again that this is JUST a pinched sciatica nerve and that it WILL go away in just a few short days, like so many people assured me…… No, huh?
I received my diagnosis of Leptomeningeal Carcinomatosis (LC) on May 20th, 2015 – exactly ONE YEAR to the date that I had my double mastectomy surgery. How ironic is that? At the time of my return from Panama (May 18th), I had absolutely no use of my lower body and could not even wiggle my toes. I needed assistance for absolutely everything, but most especially going to the bathroom, moving myself even just a few inches on my bed – and pretty much most things that involved moving in any way. The first few nights that I woke up in the middle of the night after my diagnosis I went into full panic mode, as the echo of the doctor’s words reverberated in my head.
Unlike a year ago, when I was diagnosed with Triple Negative Breast Cancer and I went research-crazy on the Internet, I haven’t googled LC more than a few times, as it appears that it all leads to the same path – a very unhopeful and short one. After about the fourth night of waking up, replaying my diagnosis in my mind, I decided to shut down those panic attacks, take the fear, and turn it into strength. Now what I am doing is believing that I WILL be the one who will defy the odds.
They told me right away that radiation was my only hope for potentially regaining any movement in my lower extremities, so I agreed to it right away. They explained there was about a 48-hour window for success and that they would be surprised, given the time that had already passed, if we would see much improvement . My first of five radiation treatments began the very next day from when it was recommended – on May 21st, with the final treatment being completed on the 27th. The purpose of the radiation treatments was to potentially shrink the tumours that have attached to and gotten within the membrane of the spinal cord. Within a very short period of time, radiation has surpassed what the doctors ever believed it would do to help me.
About two weeks ago, the radiation oncologist was shocked that could wiggle some toes slightly. Yesterday, I walked all the way around the hall using only my walker without stopping (yes I was accused of being just a little stubborn for refusing to rest part way)! My legs and lower extremities are getting stronger and stronger each day, although my feet are still prickly and ‘sleepy’ – so I am constantly wiggling and rubbing them! Needless to say, the doctors are blown away with my newfound movement and abilities.
Today I had an amazing bath in the big soaker tub. The Turkish Bath Maid appeared to have sadly missed her shift, but my awesome student nurse, Emily was a pretty awesome stand-in. Photo credit above 😁. I have to say, it was an awesome experience and I’m feeling very spoiled with the amazing care I am receiving here!
I also got to have a hall pass today to go to my parents’ house to celebrate Father’s Day with my family, my sweet husband and a couple of great friends. Although I needed a couple of ‘naps on the spot’ it was awesome to escape the dorm room for the afternoon and experience more moments of ‘normal’.
I’ve been reminded by doctors that just because I’m regaining movement, it doesn’t mean the cancer is disappearing (they prefer to keep it real and I understand that). However what they don’t understand is that I’m not the kind of person who just listens and does what she’s told. I like to WIN. I like to be the one to defy the odds.
I am not just sitting here waiting for it all to come crashing down around me. I am pushing hard with physiotherapy, trying alternative methods to kick this C and make it go away and intending to defy the odds which appear to be stacked quite high against me! Look out world – I’m not finished here yet!