Tuesday, August 30, 2011

I “have a lot of ‘splaining to do, Lucy!”

So much has happened since my last blog entry. To re-cap my last entry, in July I had been generously flown down to Texas by my sister, (who was visiting from Istanbul) to see her and my mother for a week. At the time I was extremely excited about the possibility of being part of my surgeon’s clinical trial, and I had been living a straight 33 days with staples in my leg from two consecutive operations on June the 14th and June 29th. Ouch!

I had so much to look forward to on my homecoming! I couldn’t wait to get to the clinic to see Dr. Pruitt! I happily thrust my leg out to have the staples removed. As he took them out, he explained to me that his clinical trial had just lost it’s funding. What! What a blow! I’d been wondering why my Duke appointment porthole wasn’t full up with test and blood withdraws. I was thrown into shock. He told me that as soon as he got more funding I would be on the top of the list to take part in his trial. He unfortunately didn’t have any ideas to when that would be. I was dumbfounded, as the rug was pulled pull out from underneath me. I had been counting on that trial as my last resort. I kept asking Dr. Pruitt, “What could I do!”, “Who did I need to call!”, “How could I get him the money to keep going with the trial?”  He laughed, and shook his head. He said that he was going to keep looking for funding, and would let me know when there was a green light. I went home feeling I was heading for a dark place.  I did take some comfort from the fact that it would have been even worse if I had started the process and then the trial was suddenly curtailed. Poor Dr. Pruitt; poor people already involved in the trial! I just couldn’t stand by and let it all slip away - I had to do something!

I kept thinking of what official I could write to - someone who would listen to one little person with cancer - then it popped in my head! During my Interleukin 2 treatment I had been put in-touch with a man that had gone through the IL-2 process, and triumphed over the 30 cancers contained in his body. He’d told me what to expect from Interleukin 2 and explained the side-effects I could encounter. He’s been in contact with me throughout my IL-2 treatment and has checked in with me during my many other procedures.  John, (I picked this name to keep his anonymity) happens to be connected to “known” people in Washington DC, and it occurred to me that if anyone knew about how to raise big-time money it would be John. I wrote to him in a frenzy! I explained what Dr. Pruitt’s trial was about and how important it was for the trial to continue - not just for me, and not just for the people already in anchored in the process of receiving it, but for the many people who will be diagnosed with cancer in the future. I really believe in Dr. Pruitt’s trial, and I desperately wanted to be a part of it’s ground breaking history. My fingers were a blur across my keyboard. I hit send and waited for John’s response. My finger still hovered above the return on my computer when the doubt set in. Who did I think I was! It was stupid for me to assume that John could help. I was displaying actions of a terribly desperate person. Why did I even write to him!?  The bold subject line popped at the top of my incoming mail, it was a response from John! He was shocked to hear the breaks had been put on Dr. Pruitt’s trial; he told me he would be calling Dr. Pruitt, as well as another doctor who is high in the ranks at Duke to find out more about why the trial was stopped. I couldn’t believe it!  It was thrilling! Something could actually happen!

John did call them, and he told me - that he himself, years ago, had been one of the subjects of Dr. Pruitt’ trials. John has been cancer free for the last 3 years! His anniversary scan is coming up in September. He also said, “I’m a very positive person and I will do what I can to keep Dr. Pruitt’s research going.”

I’m so happy to say, that through my emails to John, I found that he’s a member of the board of The V Foundation, a foundation for cancer research started by Jim Valvano and ESPN. The V Foundation is dedicated to raising money to be used directly for cancer research through donations, fundraisers, and grants. The weekend of August 6th they raised 4.1 Million dollars for cancer research - Dr. Pruitt was offered support by John, and they are going to be working together on a program where the clinical trial won’t be so limited by funds. I’m so happy about that, but I realize that I can't wait for the trial’s funding to become available, it will take some time for things to be put in place - time I may not have. Onwards to plan B!