In

I’m writing this blog post on my phone, so it will be a short one. I just wanted to let everyone know that after what felt like an eternity, I am IN!  I am about to start the clinical trial of which I wrote in my last post. There were so many hurdles to jump through that I felt like I might fall with every step and then be excluded from this oh-so promising study. The mental anguish and stress resulting therefrom, combined with my increasing pain, was at times almost unbearable. In more than 3.5 years of living with this disease, I have never known such anxiety and stress. I say that without an ounce of exaggeration. 

Signing the consent, which I did on February 10, was not an automatic ticket in (as was the case with my last trial). At the most fundamental level, my cancer tissue had to be shown to express a threshold amount of CEA. One of the trial drugs attaches itself to CEA. So MSK secured tissue from my bilateral oopherectomy at NYU and sent that to the trial’s sponsor for testing.  My blood serum expresses very little CEA (less than 50) compared to many people with CRC (hundreds and thousands).  To address my worry, I started researching the correlation in tissue versus serum expression of CEA, trying to find whatever I could to reassure myself.  The results finally came back last Friday indicating that my tissue was positive for CEA. 

Next were the scans. Last week I had 4 scans in the span of 5 days. That must be some kind of world record. I had my usual chest CT and an abdominal and pelvic MRI. I then had to have a PET as per the requirements of the study. The biopsy would need to be taken from an FDG-positive site, something only a PET could indicate. The scans all showed more progression, which was not surprising based on the increasing pain, but what was surprising and upsetting was a bone met in my thoracic spine, at T1. T1 is close to my spinal cord, which means the cancer is that much closer to my brain. Plus, the trial has an exclusion for any active or untreated metastasis of the central nervous system. Could a met on my vertebra that was penetrating into the outer reaches of the epidural space exclude me?  For 24 hours I agonized. I wanted to scream!  So close and yet so far. Last Friday, my MSK oncologist ordered a thoracic MRI to take a closer look at the bone met. I would not be excluded but they had to make sure the met, when it became inflamed from the immunotherapy, would not hit my spinal cord and cause horrible palm. If it would, I would need radiation immediately and the trial would have to be delayed. Fortunately, the MRI showed that the tumor had to grow by 50% before it would hit my spinal cord, and so would not be an issue. Odd what I feel relieved by these days. 

Yesterday, I underwent the required biopsy. It went as smoothly as I could have wanted (unlike the horrid lung biopsy for the last trial). The tumor I can feel right next to my belly button was a nice juicy and easy target. 

So after another EKG and blood work today and meeting the oncologist in charge of this trial, I made my way over to the hospital to be admitted. I will receive my first infusion tomorrow and will be here for two nights   I expect to be feverish and have pain as my immune system gets revved up. I am told that there are people who have responded really well to this trial — I know some of those people — and people who have not responded. And they have no idea why. I find myself wanting so very much to fall into the first category. I don’t think I’ve ever wanted anything more. I’m excited but scared and cynical and jaded  

In these last few weeks of pain and anguish, I have felt especially alone in this journey, as everyone continues in the normalcy of his or her life.  In my desperate longing to live, I am again humbly asking you to stop in the midst of your enviable normal living and spare me a thought or a prayer.