Definitely a lot to fill everyone in on. It has been a long three days over here but, first I'll catch you up on our uneventful last couple of weeks. Jody has been sick most of the last few weeks since his last chemo. There really was not much else to report. I don't think there has been a day that he has not been sick. Maybe a handful of days that he was able to control the nausea with all the medications but, really only a handful of days. He lost 3 or 4 lbs this last round from always being nauseous.
This week... We came over a day early for Jody to get scopes. We got here on Tuesday. He had labs and a port study the same day. The port has not been working correctly. Turns out it is bad and he needs a new port. We got his labs back Tuesday night and to say the least it was a rough night. The white blood cell count was very low and I was pretty sure they wold not do chemo as low as it was. His cancer markers were also back up. Looks like this chemo is not working. After getting over the initial shock I spent the evening and night doing some research. Jody would look over and try to lighten the mood by asking "Well, did you find what is going to save me?". I can now say I might have. I vaguely remember reading in one of my support groups about a couple who had a biopsy done and the tissue was sent to a lab that would actually start testing chemos and different combinations of chemo on the live cancer tissue. The benefit of this is finding what will start killing the actual cancer cells from Jody's body without pumping him full of chemo. The more we pump him full of chemo that doesn't work, the weaker he gets, and the more the cells build a resistance. I made a post in my groups looking for this procedure and I actually had a response by morning. I got the info and started contacting the lab. Jody and I really did not get a chance to talk about it Wednesday morning before his scope though. We were meeting with his oncologist Wednesday afternoon so, I went ahead and started getting all the info so that we could at least discuss it at the appt. Jody and I discussed it briefly before his appointment and he was more concerned with the cost. Leave it to my husband. The test is considered elective and ins won't pay for it. It will cost us $5000.00 - 9000.00. But, he agreed to talk to our oncologist about it and eventually agreed that this would give us the best chance of finding the right combinations of chemo.
When we saw the oncologist he did say Jody could not do chemo because his blood work was to low. He also said that we have pretty much exhausted this chemo with Jody after two rounds. His body will not be able to keep taking it. He then said that he wanted to send us back to Jody's thoracic surgeon and have a pleuralectomy done. The surgeon would take out the pleural lining and the lymph nodes with cancer in them. We were totally on board with this and that was my entrance to bring up the Weisenthal test. Our oncologist knew exactly what it was when I brought it up. He agreed that this will absolutely not hurt anything and maybe we can get a handle on what will work for Jody. He said we have been pretty much containing the cancer in the pleural but, we have to find something that works before much longer. We also discussed in detail what his cancer is doing. It is not like a pseudo mesothelioma but it is a pseudo mesothelioma after asking this question directly. He said it is definitely esophageal cancer but, also absolutely acting like mesothelioma. This is extremely rare to happen when it does not first metastasize somewhere else like the lungs. There is not much to compare Jody to for standard of care. The few cases that have done this were not diagnosed early enough and usually misdiagnosed as mesothelioma. By the time they realized what was happening it was to late. Our oncologist called our thoracic surgeon right then and put him on speaker phone to discuss all this with us. They got us an appointment today to get in with our surgeon and get the surgery set up.
We met with the thoracic surgeon today. He said he is going to take the entire pleural lining in his chest out as well as the lymph nodes with cancer. He also said he was going to do the HiTC that was previously discussed. They will pump hot chemo into Jody's chest after the pleural is taken out. There is only three hospitals that do this procedure and we happen to be at one of them. Thankfully our thoracic surgeon specializes in mesothelioma. The hospital stay will be around a week in Atlanta, give or take. When he gets the pleural out of his chest part of it will be sent over night on dry ice to the Weisenthal lab in California and the other part will go to another lab for foundation testing. He is hopeful he can get the cancer out and Jody will be on a "chemo honeymoon". If it still shows cancer or it comes back again we will have had the Weisenthal testing done and know what chemo combos work if there is a chemo that will work on him. Jody is scheduled in three weeks for surgery. They wanted to do it next week but, he had to get an injection yesterday to start boosting his white blood cell count. This should stimulate enough growth to move forward with the surgery.
The testing previously was covered by ins but, a few years back when the insurance companies had to cut cost this was deemed elective and now is not covered. We are going to take the money from the fairy fundraiser and some other we have been able to put away to help cover the cost of the testing and expenses that we will incur from the surgery and recovery. We know everyone has been a huge help and blessing to us through this. We have decided to start a GoFundMe to help raise the additional funds needed. I will post a link to the GoFundMe page this week. I am also asking for any ideas that people might have for fundraisers that we could do.