Waiting Again

Since last Wednesday when we learned the chemotherapy wasn't working, we have been discussing what should be done. The first notion, obviously, was the clinical trial as I already wrote about. But what about surgery? Iva's oncologist that has been administering her chemotherapy told us that in order to form a metastasis, the tumor cells traveled through the blood, thereby infecting her blood with cancer cells. Well if the tumor wasn't responding to the chemo, neither are these rampant tumor cells that they can't see. In other types of cancer they can check the blood for tumor markers to help determine if treatment is working, how much these cancer cells are present in the blood, etc. Unfortunately, for sarcoma there is no such marker test yet. So when Iva asked her about removing the lung tumor, Dr. Kodali indicated that usually they would not do this since it wasn't responding to treatment. Maybe in their experience it doesn't prolong life, maybe the risks are greater than the benefits in most cases, whatever. But this is not the usual case. Iva's cancer has always been very aggressive. Her primary tumor rapidly grew--so rapidly it almost killed her. By the time they finally began her treatment in Austria this past winter, the tumor had begun to grow so large it began obstructing her other organs. The doctors there were stumped. They scratched their heads and proclaimed they had never seen anything like it. Well if that is the case, then this is not the usual case and the usual approach not only won't work, but should be avoided! Right?

So we were trying to get into to see the sarcoma specialist at MD Anderson. The only option anyone was discussing was the clinical trial. So what about surgery? The first appointment they offered us was at least 3 weeks away. Three weeks without treatment of a tumor that is known to be growing even on chemo seemed to us, especially to Iva, to be too long. It was just as in Austria--she felt her tumor growing, told the doctors there, but they always told her the same thing, "come back in 3 weeks, and we'll see what to do." So naturally waiting is the last thing any of us wants to do. We do not want to repeat the nightmare that already was endured due to their delays.

Fortunately we had Dr. Ludwig's cell number (the sarcoma specialist we were trying to get into). He had given it to us when we first met with him, but we had never really used it before. So we called him today. He calls us back and told us that he was going to see Iva on Wednesday. He is squeezing her in! He will do some research, see what clinical trial is available for her, and come up with a couple of options. He also told us that if the business office gave us any problems, to call him. We still owe them $20,000+ for Iva's hospital stay back in May. We applied to the Macedonian government fund for these medical costs, but it appears that due to bureaucracy and other issues, this won't happen. So now the question becomes, even if Dr. Ludwig has a great plan, can we afford it? and will they treat her since we already owe them so much?

On top of not getting anything from the Macedonian government, our fundraising donations have slowed to a trickle. We are organizing the benefit concert for September 3rd in hopes of raising a lot at one time. The success of that, obviously, lies in selling tickets. We are trying several marketing ideas. Hopefully it pays off. If not, I am sure we will think of something, but God! how much can we really take?