This Journey

Blog Post created by Angie-Lah on Jun 12, 2017

In August of 2016, it was becoming clear that something wasn’t quite right with Dad. He was having constant back pain, and was admitted to the hospital for very low sodium and potassium levels. We spent some time at the Emergency Room on Fort Knox, and I watched as he writhed in pain, unable to get comfortable, constantly trying to pull himself up and move around in the bed. It was obvious that there was no position he could lie in and obtain any relief from the pain. I stayed with them for hours until the doctors made the decision to move him to Louisville and for them to continue testing to figure out what was wrong.

At this point, we still had hope. This was nothing. The doctors would figure it out, and Dad would be up and riding around on his newly triked out motorcycle in no time.

His health waxed and waned over the next few months, but we continued to hope in vain that he would regain his strength and get back to normal. I don’t remember the exact date that we got the cancer diagnosis. Once the doctor said those dreaded words, Lung Cancer. “Stage 4”, even though lung cancer isn’t broken down in stages like other cancers. He was trying to tell us it was terminal.

The next few months would be a roller coaster of hospitalizations, with each one progressively making him weaker. He was admitted in January for pneumonia, and then in February, we got word that the cancer had metastasized to his brain. You would think at this point that I would have entered some kind of acceptance over this but all I remember after getting this phone call is being on the floor in the kitchen, back against the cabinets, sobbing. I think it was this news that really, finally, drove home for me that this wasn’t going away.

 We celebrated his 66th birthday in February. He was weak, but he was still up, mobile, and eating a decent amount at each meal. I went over and made hummus chicken for him, one of his favorite dishes over the last few months, and his mom’s bean salad. I never have gotten that recipe quite right, but they both seemed to enjoy it. We ate twizzlers, and he rediscovered that he liked Gardettos. I guess with me out of the house, they hadn’t purchased them in a while, and he forgot how good they were. J

Dad would undergo chemotherapy, radiation, and a literal **** ton of medications over these months, to try to improve his quality of life, and try to drive back the growth of the cancer.

On May 23rd, after another bout of what was assumed to be low sodium and potassium, more brain lesions and a possible previous stroke were discovered. His oncologist made it apparent that the next round of chemotherapy that had been suggested, oral chemotherapy, just was not possible in his present condition. After talking with Mom, and getting the information she’d received from his doctors, it was fairly obvious we’d reached the point where his present condition wasn’t going to improve, and further rounds of chemo would just take away what quality of life he could expect to have over his remaining months.

The decision was made to have hospice come in, and to take him home.

He’s home now, and we’re making the best of what can only be called an impossible situation. No one ever tells you that there’s no switch that is flipped that tells you when the last coherent conversation you’ll have with your loved one is going to happen. I already know I’ve cooked for him for the last time. He’s down to eating soft foods like jello, pudding, ensure, etc. Things that he can easily chew and swallow. Chicken at this point would be way too difficult. I already know that I’ve already gotten the last advice I’ll ever get from him. He’s still able to answer simple questions for the most part, when he’s having a lucid moment, but the brain lesions have made it very difficult for him to stay focused, and conversation is beyond him now.

You can see the frustration in his eyes when he struggles. When he sits for up to half an hour smoking a cigarette that isn’t even in his hand and tries to put it out in an ashtray that isn’t there. Most of his faculties are gone at this point, but he’s still trying to smoke. And sometimes Mom wheels him to the door and lights one for him and watches as carefully as she can, but he’s still managed to burn his fingers in about 4 different places because he’ll just keep smoking it down right past the filter.

Mom has become his full time caregiver. And it’s wearing on her. We help where we can, but another thing no one ever tells you is how to balance still trying to maintain some semblance of a normal life; working, taking care of pets and bills, trying to stay on top of housework, and yet still somehow making the hour long round trip drive to visit as much as we can and help as much as we can.

One bright spot in the dark is that my brother was able to PCS here with his family and they’ll be living with them for a while. He’ll be able to help with lifting Dad, and be able to do the things that my husband and I can’t.

I still have some anger in my heart over all this. Maybe it’s a denial thing on their part, but Mom is still insisting that Agent Orange had some huge part in all this. Like its 90% to blame for his cancer. And hell, who knows, maybe it did contribute. I’m not a doctor. I do know what the studies say. And they all agree, cigarettes = cancer. It feels like using Agent Orange is a cop out for everyone in my family to continue smoking, which is what they’re all doing. I have vivid images in my head of them leaving the funeral home in the coming months to take smoke breaks while attending the funeral of my father who died of cancer. It makes me angry and it’s frustrating to no end.

I vacillate between sympathy, anger, and frustration. I have to carefully gauge my responses sometimes when visiting with them because it almost feels like I enter some kind of twilight zone of denial and outright refutation of reality. I sat with him for a few hours recently so Mom could run some errands as he’s reached the point where he can’t be left alone at all. On her way out, she said “I left some cigarettes on the front porch for him in case he wants some while I’m gone. But don’t you go and smoke them!” I just sat there in disbelief for a moment and all I could say was “Are you serious?”, while in my mind all the things I couldn’t say: In what world, in the last nearly 7 years of being smoke free would you think I would pick up the very item that is causing our current situation? What in buddha’s name would make you think I would ever touch these things again? Have you not seen what they’ve done to your husband? What they’re probably going to do to you because you refuse to accept the reality of why we’re all watching his rapid decline?

I don’t expect anyone to live forever, but I did figure we’d have at least another decade or more with him. Cigarettes have stolen him from us. He’s still here, and we’re treasuring what time we have left, but he, whatever made him HIM, isn’t here anymore.