I know so many of you know a little of what has happened recently and have been waiting for this post. I was not able to bring myself to actually type what was happening at the time. We have many more bad days than good recently and when we do have a good day I am to exhausted from the other days to sit and type. I am going to try to recap the last month though.
Last time we went to New York our Oncologist said Jody had inspiratory stridor causing his breathing issues. He did not agree with the pulmonologist that said the weight loss is causing breathing issues but, felt it was the other way around. He felt something was blocking his trachea and and that was actually causing the weight loss. Because we had to fly home we were not able to se someone up in New York to find out what was actually happening. The Monday after we got home we were told it was best to go to the er and they could start running test and refer Jody everywhere he needs to go. By this point he was completely wheelchair bound and would get winded just trying to talk. The first er told us he had pneumonia and a huge mass on the right side of his chest. I had to explain to the dr. that Jody does not have an esophagus and when that was removed they did a gastric pull up and his stomach sits in the right side of his chest. No mass. Anyhow, he wanted to transfer him to Memorial to be admitted and deal with the pneumonia. He told us they did not have the equipment. I was going to drive him but, they insisted he should go by ambulance after a seven hour wait for the ambulance they finally arrived. We arrived at Memorial about 11pm. They did chest xray and told us that he did not have pneumonia. About 230 am I left to go home to shower, get clothes, and be back by 7 for dr. rounds. Jody asked me to text him when I got home to let him know I made it since it was a little over an hour drive. When I texted at 4am he texted back to tell me dr. after dr. came in after I left and told him he had a mass and he needed to go on hospice. They felt he maybe had a few weeks left. I called him and told him to get the dr. back in the room and after threatening to drive back up there right then he finally called the nurse and got the dr. back in the room. The dr.s told me on the phone that he had a large mass on the right side and we needed to consider hospice. I once again had to explain to them about his stomach. At this point I was very frustrated with all the wrong diagnosis that I told them to get his discharge papers together and I when the cancer center in Atlanta opened I called his thoracic surgeon and explained what was happening. He sent everything through and with in a few hours I had a call and Jody was set to be seen by radiation the next day and figure out what was happening. We drove over to Atlanta late that night and saw the radiation oncologist the next morning. After getting a scan he said the mediastinal nodes that were previously slightly enlarged are bigger and pushing on his windpipe. He set Jody up to start radiation the next day for ten treatments and said he could get these significantly down if not all the way. He also told Jody that he would be walking again and off the O2.
At this point we are not sure if we will continue the chemo that he is on or not. We were told he was having a partial response at least and do not know if this is more cancer in the those nodes or if it is inflammation caused by a "kill off" flare up from necrotic cancer cells. We will know more when we can get back to New York to see his oncologist.
We have been wanting to get Jody started on IV mistletoe as well but, the closest place we have found to do it is in Atlanta. The treatment is very expensive at 350.00 an infusion and he would need multiple treatments to get started. After that he could go to subq injections and just come over once every two weeks for a booster infusion. We decided while we had to be in Atlanta for two weeks we would start the infusions.
We won't be done with radiation for a few more days but, without a doubt he is doing considerably better. The O2 has been decreased, he is talking without being so winded, and he is slowing starting to walk again. We are trying to get some weight on him again as he lost another 30lbs through the last month of this breathing mess. Dr.s have said he is not at a point for hospice. His pleural effusion has not grown and that was previously the concern (it's stable as well as most everything else). We have an appt. with an oncologist next week that looks as though she may take over a good deal of treatments locally and still consult with our oncologist in New York. We will continue with our pulmonologist, thoracic surgeon, and radiation oncologist in Atlanta as well as now having an integrative oncologist and dr. in Atlanta that will do mistletoe and help me with the other supplements.