We went to New York last week for chemo and as usual the chemo part went smooth. I know I have said I did not know how the office could function. At times it feels so disorganized but, the girls up front and our AMAZING nurse have that office running like a well oiled machine in reality. Flying in however I think someone left American a few quarts low again because they do not operate so well.
Thursday as we were getting to the airport we checked our email again and saw our flight was canceled, AGAIN. I immediately got on the phone with American. There was no more flights out of Savannah to New York. We had to drive to Charleston to catch a flight. By the time we got to the airport it was 5:55 and the flight left at 6:22. I dropped Jody at the front in a wheelchair with the bags and parked the car. When I got inside I asked ticketing to call back to the gate and let them know we were there. They insisted we would make it and apparently did not call back. I was at a full run while pushing Jody and carrying bags to get us to the gate after getting through security. When we got back to the gate they had already closed the plane and pulled the jetway back. I was crying and explaining how we were trying to get us to Jody's chemo and our original flight was canceled and they sent us up here. They did open the plane back up for us. I could go on and on about the problems we had. They took us off another flight unintentionally at one point during this trip and nobody knew until I tried to check in and had to call to get us back on. They changed our seats to the very back and did not tell us. We are usually towards the front due to Jody's breathing issues. It may not seem like a big deal but, it is huge when he can't make it across our house without becoming winded and even more of a big deal because it is not like this has just happened once. It's the last two trips to New York and all kinds of issues on the trips with American.
Chemo did go very smoothly. All his labs looked good so we were able to get chemo started right away in the morning. His oncologist in New York. Has been measuring his supraclavicular lymph node and between the last two appts it has shrunk. Even more to back up the cancer marker numbers going down and the chemo working. This last Monday we got his labs back with the cancer markers and we saw even more of a drop in the three days between last Tuesdays lab draw and Fridays lab draw.
We were suppose to have an appointment today with an oncologist in Brunswick. This is an oncologist that I actually spoke with back in December about Jody's treatment. He told me that if we see that it is working and Jody is tolerating it then he would take it over. So, we called and he had his scheduler get us an appointment. Last night he called me to tell me he could not do the treatment because there is no trials of these chemos together. I just don't understand how it is better to let a person die than do a treatment that has been tested on their specific cancer tissue and works. Wouldn't we rather try it and run the risk of anything that happens than let him die. We know that is the alternative. We know we have tried four previous chemo combos and they have not worked. We know there is not much more out there for this cancer because it is under funded and under researched. We also know these chemos are working. The long of the short is these dr.s are afraid they will not get paid for a treatment that is not standard of care for his specific cancer. Crazy because I have the eob's from our ins that they are paying for this treatment already and we are paying cash for the chemo and other medication that is not covered. A big part of the problem is "big pharma" charges an astronomical price for these chemos and the dr. has a contracted price with the ins company and would take a loss on the medication itself. However, the hospitals and big companies get many chemos in bulk at a very reduced price from the pharmaceutical companies. Jodys chemo is not one that is used often and never for his specific chemo. These place don't have the chemo Jody needs in bulk. We pay cash for Jody's chemos and then the pharmacy we use for the infused chemo sends it directly to the dr.s office. It is a referred to as byoc, bring your own chemo. These big places don't want to do this. Finding a private practice is what we will need and that seems to be nearly impossible. This is what we get in New York but, we are desperately trying to find a more local dr. to this so we can cut the cost of plane tickets, parking, hotels, ordering food, and everything else we need while up there every other week. We would still have to cover the cost of all the chemos, medicines, and supplements that are not covered but, that would be more manageable. Right now I think we are averaging over 4000.00 a month for treatment and travel. We could cut this in half if we could get a dr. closer to home. I put this out there because we are open to suggestions if anybody knows one. We know they will probably have to be a smaller independently owned office. Not owned by the hospital or a larger company that they have to answer to.