A crazy circle of events

Last week I was taken off my phase one clinical trial drug temporarily, because my blood counts were so low.  My white count was .5,  which many of you will know is critically low. Two weeks earlier, it was my red cell count that had fallen, for which I received blood transfusions.

It's a crazy circle of events. The chemo slams your blood counts downward, so they take you off the drug.  Then, your numbers recover because you are off the chemo, so they put you back on the chemo until the blood count again falls critically low – and they take you off again.  It's a crazy life I lead.

I was off chemo last week but returned this week to the clinical trial doctor who took my blood pressure, which was 70/50, and my pulse, which was 145.  Why?  Who the heck knows?  Certainly not I, but they don't know either.

It is so darn frustrating. They rushed me to the hospital and immediately started fluids.  After four hours, my blood pressure returned to normal, but they could not figure out why my pulse was still 140. This cancer game is such a crap-shoot.  All they could do was send me home with antibiotics, because – just maybe – it could be due to an infection.

I now have an even more annoying malady. Ten years ago, I took a bone hardener for one year (via I.V.), which I abruptly stopped taking, because people on the meds were developing jaw necrosis or jaw death.  So here I am today, a decade later, with a painful jaw inflammation that makes me feel like I need a root canal. I cannot chew on my left side, it hurts like the dickens, and after seeing three specialists, the only answer they have is that I have to live with it.  Are you kidding me? They say it will go away on its own, but it's been three weeks.

Living with cancer is sometimes nearly impossible. I am spending the day on the Internet to find someone who can help me.  If any of you have experienced this, please let me know how you handled it.

Last week I flew to Washington, D.C., as I had been invited by the National Institutes of Health to deliver the keynote address at their Annual Research Fellows and Young Investigators Colloquium.  Although my white count was low, I was not going to miss this opportunity.  I met a group of young investigators, the next generation of scientists who will carry on the mission of curing cancer. They were so bright, innovative and committed.  I was honored to be amongst this group of men and women who hold our future and our children's future in their hands.

There are so many promising research projects in the pipeline.  I will stay in touch with these M.D. and Ph.D. Fellows and will follow the progress of their work!