Getting to the Clinical Trial is ... a challenge.

So we went on the Rock Legends Cruise, itchy and with swollen lymph nodes ... thinking it would be a diversion and I can miserable at home or there. The problem is that I got worse and worse on the ship, to the point that I knew I needed to get home. I contacted the coordinators of the clinical trial and they were able to move the Head CT, Body PET, and Bone Marrow Biopsy up to March 11 and 12. I'm a bit freaked out that the biopsy will be without general anesthesia. It's bringing lots of memories back of 7 years ago. We then still went to the timeshare for 5 days with our dear friends. Thankfully, they were totally game for a very laid back time together. I slept a lot during the days. Why are rashes so much worse at night? 

 My hope is that, once I start the clinical trial drugs, I will feel better. That my neck will shrink back to normal, that the feeling of illness I get overwhelmed by will subside, the rash will subside, and the side effects of the drugs will be manageable. And that they work to kill the EBV virus and then prompt my body and the drugs to quell the lymphoma. 

I wrote that yesterday. Today I felt so bad and couldn't stop coughing so the oncologist specialist's office (Haverkos) sent me to get a chest X-Ray, Respiratory Panel, and labs. Surprise, surprise, I'm Covid positive. That explains why I've been so tired and feeling ill. My LDH numbers have skyrocketed, indicating the lymphoma has become aggressive, like they have said it would. 

This has been such a faith walk. I suspect God's perfect timing is showing up with this clinical trial, just in time. I just need to get through the vetting process and deal with all these symptoms and side problems until the drugs can take effect. It could be a few hard weeks, but here is hoping. 

Regardless of the outcome....God has been so close, so faithful, so kind. I will work hard to remember all of that.  

 

 

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