How do people find their new normal? I've done it a few times now, and it's always been simply step by step by step. It's usually been a new baby joining the family. Then it was no longer working and dealing with back surgeries, procedures and constant pain. We had a HUGE adjustment time when hubby had his stroke, but we were getting there! I even went back to school, something already in the works when he got sick, but I just changed my direction a little bit to get to work as fast as possible. For almost 6 months we watched him get progressively better. And then one day he woke without most of his recovery and went backwards everyday, and faster each day. Finally we found out something very serious was very wrong after I completely went nuts and demanded some testing NOW, not next month. Of course there was something wrong! His cancer came back, and right on schedule. (I keep wondering if the doctors had really listened to me we could've caught the cancer while it was treatable...there are never answers to those kinds of questions.)
So. It's cancer. And I found out tonight how much they didn't tell Brad when he beat it the first time-that the survival rate was only 70-80-% for 5 years. If he'd known that, I think his experience that summer of radiation, being completely alone as a young kid all summer in a strange city, very differently. Maybe it was best he didn't know his life was still in very real danger. But he had the right to know, and I am completely finished with doctors withholding information, which I think they do to avoid dealing with the emotions of their patients. Maybe there are reasons I don't understand, but in the age of google, our amazing neurosurgeon STILL failed to tell us the truth that Brad's life is really in danger. He actually said "I don't know any of that - it's not my job! I just get the specimens the pathologist asks for." Of course he had no idea who's job it WAS to tell us what in the world we were dealing with. Why they were arranging chemo, and suddenly cancelled it. Is that good or bad?! I asked the doctor "So you're comfortable with hubby just walking around with cancer growing in his head," and he actually gave a resounding and cheerful "Oh yes!"
Exactly how, while I'm working on getting a new home healthcare worker trained, fighting with the ridiculously stingy medicaid to get a son's bone surgery done, and doing my clinical hours at a hospital 45 min. away from home with just one car in the family, am I supposed to make the calls to the 10 or so cancer groups and advocacy and information agencies? If I had any cell coverage on my commute that would be the PERFECT time. But naturally I don't have cell coverage even if I could find my blue tooth. If I work the 5;30am-2pm shift, I get off just in time for all East Coast places to close.
I am dead tired. Really and truly tired. But you know what? Brad is at peace. What a blessing!
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