Confused: Lung cancer, pulmonary fibrosis and more

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Oh dear. What are the docotors saying about your need for contiuned hospitalization?

Merry. Just an update here, will hopefully know more after the PET scan on the 26th. The pulmonologist is thinking the left lung damage is due to the radiation treatments but is at a loss to why the damage iis continuing to spread after 4 months. If I had to do it over I would not have consented to radiation treatments. I’m now on oxy 24/7 with severe SOB. Had a bronchoscope procedure last week and my left bronchial tube is so restricted and damaged they couldn’t get a biopsy for fear of bleeding. We are still draining about 500+CC’s of fluid off the right lung every 3 days and shows no sign of change. The positive news is a recent CT showed I am still cancer free. My oncologist’s notes are a “miraculous” and “profound” response to immunotherapy/Keytruda. Hanging in there, prayers to all, never give up..

@duckduck2020 Just popping in to say hi and to see how you’re doing.
You had so much going on at one time with your surgery and the loss of your brother. I know you were dreading the ileostomy surgery. Are you coping this change ok? I’m sure it’s going to take time to get used to a new routine. Have you been able to resume your chemo treatments now?

Again, I’m so sorry for the loss of your brother. I hope you were able to be with your family during this sad time. Thinking of you...Lori

Thank you for thinkingi about me . Yes a lot has happened . First off I was on the hospital from Wed till Monday , I was in so much pain and the Doctor said there was so much infection in there. I still cannot believe that she still did the surgury. I wished I had never had it done. The surgeon wanted to take me off of all meds and fluids and give me some really string pain meds ! All I had to do was Sign the DNR. . Snd she would do it . My wife after she left said I hope you understand you were signing my death wish ! She did not like it so I called the nurse in and told her to cancel it ! She called the aft and the Dr had to tell en my family could deal with it I said that is what I wanted .
Well here I am two weeks later and when I went in on Tuesday the chemo dr would not give me chemo because he thought I might still have infection . That was after he talked to the surgeon and had to walk out of the room when he was talking to her, that ticked me off.
Something is just not right on this picture to me. He was so nice abdvresfy to follow through until then .
I hate it when they are so secret !
Then I had to go to the surgeon and she took the drainage tube out and said you are all set . I said that means I can go on my fishing trip and she said do whatever you want! I asked her how the colon was and she said well you still have cancer there . I knew that but wanted to know if it shrunk . She said yes some :!
I feel Chemo dr told her what my wife said and that was she thought. The surgeon just wanted me to die !
I know my wife is uncomfortable with the chemo dr also! He seemed washy eadhy with some of his answer too .
Anyway I am going on my fishing trip with my family from the 9 th 13! Then I see his nurse oractioner on the 25 th and she will discuss my chemo options then

@duckduck2020 Oh my goodness, you’ve been having a horrible time! I’m so sorry that you’re still dealing with this level of infection! Are you not on any antibiotics? I hope the pain level is subsiding.

I agree things sound a little sketchy and you’re not getting clear and concise answers. You’re rightfully unhappy and don’t feel you’ve been treated appropriately. When you return from your well-deserved fishing trip with your family, you might consider changing doctors or getting a second opinion. Have you contacted a clinic such as Froedert?

Wishing you a wonderful time with your family. If you’re sticking to Wisconsin it looks like you’ll have a great week of fishing weather and the dragonflies are out to take care of the skeeters! What’s your favorite fish to catch? Notice I didn’t ask what’s your favorite fishing spot...those secrets run deep. 😉 Take care! Lori.

Thank you I pay I will beable to do this. If not o love it up north

@duckduck2020 I pray you’re able to join your family on this trip too. You said you love it up north. Do you have property there that you can go to for a good distraction? I swear, nature is healing...if not for the body, for the mind.
You mentioned living in Appleton. If you’re not feeling up to travel at least there’s no shortage of wonderful large and small bodies of water within 5 to 45 minutes depending where you live. Even a shorter outing to one of the great parks in the area for tossing your line in the water would be a pleasant way to get some fresh air and sunshine. Stay cool! Our weather definitely is turning sultry this weekend. Lori

Yes we have a year around home up there but we only use it as a cottage . It was my parents place . It is up by Ashland

@duckduck2020 Hi, you’ve been in my thoughts lately. With our last little chat there was concern with the lingering infection and your chemo hadn’t been resumed because of it. Has there been any improvements with getting information and help? It seemed like your doctors weren’t very forthcoming with information. Time for a second opinion?

I know this past week was the family fishing trip. Were you able to join them? Any good tales of the ‘one that got away’?
Let me know how you’re doing. 😉 Lori