It has been a long couple of weeks around here. First I will tell you I don't always tell the "whole truth" on here. I omit a few details. Getting the bad news we have gotten the last year every time we go to the dr.'s is discouraging. Jody sees the way some people look at him. No matter how hard most people try to hide it we can see the look in peoples eyes when they think he is not going to make it. To add some of these details would add fuel to that fire and we can't have that. Today we did get some good news. Actually probably the best news we have had in a year. All that said I am going to try to recap what led up to this.
Friday will be the third chemo treatment with the fifth line defense chemo. That means as of 9am Friday we have completed two full cycles on the chemo. Jody has become pescatarian. He doesn't eat meat or dairy and avoids sugar and white flours. He is also taking about $750.00 worth of supplements a month not including his chemo. We started this around November after doing a lot of research on his cancer. Needless to say the food was the biggest struggle in the beginning. Anyone that knows Jody knows he grew up a meat and potato (no potato's either) boy from the mid-west.
The following may jump around a bit.
Monday we met with a local oncologist for the second time. This is the one that will not do the treatment but, will monitor labs in between trips to New York. I should probably mention here that Jody is not forthcoming with the oncologist about his side effects. After the first chemo that was knocking the cancer out but, he had to come off of because of the toxicity and what it was doing to him and then not finding another chemo that works he will not tell them when he has side effects. Anybody in his situation probably would feel the same way. So, we met with her to do his labs. She ran his cbc and because of the injections I was giving him after the last chemo they all looked good. However, we asked her if she was running is cea and she said not this time. Remember this is the only thing we have to tell us what is happening between scans and for the last 15 months Jody's cea has corresponded with the cancer and the lab is covered under ins. She did proceed to tell us how this cancer will never go away and they might be able to stabilize him. We were having this conversation because he was in a wheelchair. He could not walk from the car to office without losing his wind and then coughing so hard blood would come up. We asked her about the cough and Jody asked if the cancer started to go into remission would his lungs get better. She told him not really. This is just how its going to be. I interjected at this point and pointed out that when Jody was on Keytruda his lungs got bad and after being off for six weeks he started to get better again. She looked at him like he was not going to make it until the end of this month and then told me mucinex might help ease it a bit. We left there feeling very defeated. I don't think I really have done a good job of explaining how awful this was. She looked at him and treated him like he was a lost cause.
This was devastating. There was a lot of tears on Monday. I could tell Jody was losing his will. He was having panic attacks when the coughing would get to bad. He actually told me Monday that he was sorry for all of this. He felt like we waited to long to get the treatment in New York and that as hard as it is I will have to accept at some point he is not going to make it. He told me he didn't know if he could make the trip to New York this week. I am forever grateful for the few people in our life that think we are going to beat this or can pretend well enough we can't tell what they really think (thank goodness for text -no eyes or tones in the voice). Anyhow, I texted our amazing family practice NP and asked her if she would run Jody's cea Tuesday. I told her we needed to know before we made another trip up to New York. Jody was discouraged and needed to know if it was working or not. She ran them Tuesday morning.
Wednesday morning we still did not have the results from his cea. Jody was getting so winded at this point he could barely talk. Mid morning I got a call from a dr.'s office. Turns out the local oncologist referred him to a pulmonologist for his breathing. The gal said they didn't have any appointments until the end of March but, someone canceled and he was moved to the front of the list, could I bring him in today at 3pm. We definitely had some anxiety leading up to this appointment in the few hours before. How honest were we going to be with him was the question. We wanted help for his breathing but, did not want to come off the chemo. We were both terrified he was going to have to come off the chemo. About this same time our NP got in touch with me to give me his numbers. They have dropped. The only indication that the chemo is WORKING! The chemo is not just flattening the curve but, the numbers were actually lower. This is the first time since last February when he had to come off the first chemo that something is working. However, our anxiety just shot through the roof with worry he would not be able to continue treatment with his breathing.
We met with the pulmonologist and I can say that man did not look at Jody as a lost cause as a matter of fact he treated him like he had this condition and it would go away. The more we talked with him the more honest we were about what was happening and the treatments I have been giving him at home. He gave Jody a steroid shot and in the morning he starts a low dose steroid. He is also now on a daily inhaler and has albuterol treatments in the nebulizer as needed. The dr. also reiterated what I have been saying to Jody. He has to eat and get enough sleep. Eating makes the cough worse this last week and so he refuses to eat. What a difference the steroid injection and inhaler made. He was feeling so much better. Exhausted because he hasn't slept in three nights but, he is hardly coughing and ate a good dinner. The pulmonologist said Jody may have to stay on the low dose steroid throughout chemo because his lungs are inflamed but, as long as the chemo is working this dr. will manage the side effects. Jody also asked about the future of his lungs if he goes into complete remission. The pulmonologist said he would get 70-80% of his lung usage back. Because he never completely healed after the last surgery and was able to expand the lung back out before starting a new chemo that made him weak again 70-80% would be about as much as he gets back. He said Jody would be able to hike again and run. Just maybe not run five miles. We will take that!
Between the cea numbers coming back lowered, finding a pulmonologist that will manage Jody's symptoms and listen to us, Jody has a renewed fight in him. He is already feeling better and ready to power through these chemo treatments. We are still hoping to find a local oncologist that will do the treatment. We have an appointment Thursday with an oncologist in Brunswick, two hours away. Praying he will do the treatments. Until then New York bound again tomorrow.