Wednesday, October 20, 2010

The Waiting is the Hardest Part

It's Darkest Before the Dawn

It has now been six months (plus) since I was diagnosed with leptomeningeal metastasis (LM), and I'M STILL HERE!!! Furthermore, I've mostly enjoyed a good quality of life. But lately, the hardship of fighting cancer has been harder to take.

My central nervous system (CNS) is threatened by clumps of cancer cells floating in the cerebrospinal fluid (CSF) in my brain and spine. I am at serious risk of having a stroke or suffering serious neurological problems (including death) caused by blockage of the CSF. I already have experienced episodes of losing some control of the lower part of my body, due to metastasis to the spinal nerve roots. So life's been kinda tough right now for me!

One of the hardest parts is this waiting...I KNOW the injection of this drug into the CSF is what I need, and need NOW; but I feel a bit like a high-school student who has spent a lot of time and money getting ready for the prom and is now nervously afraid I'm being stood up!

The neurosurgeon required I wait two weeks after surgery before using the new Ommaya reservoir in my head, which is now UP. So we have spent this time trying to get everything lined up to get the first injection, plus we have still been pressing forward on trying to arrange getting the injection via lumbar puncture. But it is proving to be much harder than we had hoped!

Finally---after working with numerous doctors, nurses, office staff, and my insurance company customer service these past weeks---I have an appointment for TOMORROW to receive the first intrathecal injection via the O-res!!!

I fully believe this treatment is going to prolong my life long enough, and beat back the LM, so that I can travel to Seattle and visit the Tumor Vaccine Group, where I believe I will receive the experimental therapy that will cure me once and for all.

In the meanwhile, I've been remaining as peaceful and unworried as possible, enjoying the stormy weather that surrounds me from the comfort of my sofa, confident I will again spend long days in the sun.

No comments: