Team Photographer @RcklandBoulders since 2015, guitar, EMT, @Ironman 70.3 Music law, MBA, Insta: @drewwohl @itri4acure Cancer DX 2014, inoperable/incurable 2017
Joined July 2010
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Walk a bit with a walker. Got used to the new apparent normal. Then I started feeling weak again in mid July. By mid August I was back in the hospital. Lungs full of fluid. Chest tube to drain it. 2 liters out in under 2 days. Kept draining
Stand for a couple of minutes while holding onto support, move from wheelchair to bed or back to wheelchair, and walk maybe 20 feet or so with walker. They are not sure how much I will improve from this point due to the cancer location.
Will see if a drug I started a couple of weeks ago works - it looks like it may be. Will see what next scans show. There is one tumor in particular that seems to be affecting my right leg. If that shrinks, perhaps my right leg will bounce back. 🤞 @ThanksCancer
But since I have so much cancer, as far as the insurance company is concerned, it is not worth it for me to get the treatment. I figure I would get at least another year or so, with these being treated since the drug trial is looking like it may keep things in check longer.
Seeing this in writing is still a bit of a gut-punch, despite the fact that I know I have a way to get the treatment, albeit delayed, despite the insurance company. But I have started coughing up some blood. Hoping other patients never have to deal with this type of thing.
The proton therapy will check these tumors, prevent damage to the surrounding organs, will have less side effects (I have had effects from standard radiation, which is why I had my walking ability trashed) and will let me continue my whack-a-mole.
Most of my cancer is now controlled in my on-going game of whack-a-mole. But a few tumors need the special attention due to their location. Obviously this will not cure my of my cancer. That ship sailed a long time ago. It has been palliative treatment for years.
My doctors at @MSKCancerCenter do not know about what treatments I should have. My radiation oncologist has been treating me 6 years told me proton therapy is the right move. Maybe the peer-to-peer changed the insurance companies decision - have not heard yet. @ThanksCancer
Insurance company called an hour before they closed for the weekend. They left message that I got it 2 minutes before they closed. They are denying my treatment. They did not specify what treatment, but since the only one that I am waiting on is for proton therapy…
The tumors are growing rather quickly. Guess the doctor who sits behind the desk there, denying claims, is putting their medical degree to good use. Instead of doing things like being a real doctor.
For 10 years I’ve been doing everything I can to stay alive. In the past the delays were not quite as critical. I will now have to wait all weekend to find out what is going on. Gotta to love this. ( @marklewismd - I know you do 😉)
