My Scan Results & A California Recap

Halleleujah! Praise be to...ah...some higher power, I guess. You can call it God if you like. My 3 month out CT scans were good! Here in cancerland we call it NED - No Evidence of Disease. 'I'm dancing with NED' is a common expression for those in remission, like me. In my case, I'm doing a little Dance Dance Revolution with NED:)

The actual scan went as well as can be expected. The scariest part for me is anticipating and wondering how many pokes it will take for the IV. I hydrated the heck out of my body all day long, peed a river, which made me worry that the extra fluid was not staying to plump up my veins. But it was; hence, it took one poke and just a little routing around in there to be tapped. The rest was a breeze.

The scan happened late afternoon Tuesday, but I couldn't get results out of anyone until late afternoon Thursday. After several pestering phone calls, it finally clicked with them that I wanted to know NOW. Apparently, the report was on the onc's desk and she thought we'd just go over it at our appointment next week. Who can wait a week for something like this?! That's just inhumane. So, yet again, I've felt all alone in the health care system, perpetually on the verge of being lost in the shuffle, and no one is looking out for my best interest but ME, MYSELF, and I.

As an advocate for our father, we have found this to be true. It's an old lesson for me by now, but a shocking realization for my sister. You have a higher rate of success with face to face interactions, which doesn't bode well for phone interactions. We have found you need to "follow up call" every little thing. Dad's doctors don't communicate with each other, so we have also been the fiber optic cables relaying their opinions to each other as well as the patient's concerns. Why does information have to bounce across the country just to get phoned into a different office down the street? Because we care a lot more than they do, that's why.

Our trip to California was very sad and stressful. It was a necessary trip for sure. We learned more being there, seeing him with our own eyes, talking to his doctors and caregivers than we ever could have cobbled together with phone calls. Now we have names and faces and they have ours too, for what that's worth. He has more than just leukemia going on. In fact, the leukemia is the only thing getting better. He has emphysema, congestive heart failure, and peripheral vascular disease, too. He lives on oxygen and still has breathing attacks once in awhile. It was very sad. I believe he knows he is dying and thus wants nothing more than to continue life as he knew it until he just drops. All things considered, that would be great, except unfortunately, he can't walk and can't control his bowels, which makes it difficult to be self-sufficient. Gladys can't physically or emotionally care for him. She is having a hard time caring for herself these days. We can't afford a full time nurse, so going home for good is out of the question. That reality is killing him. He gets angry when he is told he cannot go home or drive himself to the bars. Perhaps smoking and drinking himself to death has been his plan for years, and now it looks like death might not be on his terms.

I struggle with my role at the end of his life. What am I supposed to do? How deep into it am I supposed to get? All the way would be to make his wishes come true whatever it takes - paying for a nurse, going out there to be the nurse, or bringing him back here to live with me. All drastic choices that I'm just not feeling compelled to jump into. Dad has been a loner all his life, keeping his independence, answering to no one. He was never a very good father to us; therefore, we aren't at all close. So, where does that leave me now? Feeling very sorry for him. Leaving him to lie in the bed he's made for himself. I realize this sounds chilling coming from a daughter. How we choose to live our lives does have consequences. I will continue to be his advocate and help put his affairs in order from Maine.

This scenario brings me to another enlightening life lesson brought to me by the Hodge. Everyone needs people. No one should be a loner. For the simple reason that we all need someone to call on when we need help. So, be nice to people and they'll be nice to you.

It's so nice of you to have read this whole thing. Now I will be nice in return and read whatever comments you may have.