I started writing this on Wednesday before Dad died. I didn’t know what would happen. I wasn’t sure I could finish it. I have not changed what I originally wrote – I stopped writing on Friday August 20th. I picked it back up today. There are three parts to this story.
WEDNESDAY AUGUST 18, 2021
I stand by the side of Dad’s hospital bed as he tries to open his eyes. He doesn’t see me. His breathing is at best raspy and at worst like he’s drowning. The sound of him gurgling will be my constant companion tonight. So far today he’s had his lungs deep suctioned at least once, been on oxygen multiple times, and has been in the OR for a PEG tube so he can get some nutrition, at last. He hasn’t had any food in seven days. He can’t swallow on his own. He can barely talk. His mouth is so dry his tongue must feel huge in his mouth. He’s been sleeping most of the day, seemingly painlessly, thank goodness. Yesterday he thrashed and tried to leave the bed and couldn’t make sense of anything and hallucinated like he was on LSD.
Dad does not have COVID. He doesn’t even have COVID related pneumonia. Dad has cancer. The tumor that has invaded his throat, which started in his left tonsil, has grown so that he can no longer swallow. It is pressing on his carotid artery, which we assume is causing his confusion. It was found in lymph nodes on both sides of his neck. The pneumonia that put him in the hospital was caused by him aspirating on something because he was having trouble swallowing. But we didn’t know. He didn’t know.
We were pretty sure a throat cancer diagnosis was coming. A couple of months ago Dad fell in his home and was sent to the ER by the EMT’s. There they found nodules on his lungs during a typical chest X-ray. He was referred to a pulmonologist who ordered a PET scan (positron emission tomography). A PET scan is often used to detect cancerous cells in the body. The lung doctor let us know that the nodules in his lungs seemed harmless (for now) but that he detected “something” in his throat which needed to be checked by an ENT. So we made that appointment and waited anxiously for the day. Emotions ran high with all of us, one minute we were thinking lung cancer is definite since his own Dad died from it, and the next we’re dumped into throat cancer territory. All unknowns to us, as none of us have ever really experienced knowing anyone with cancer.
A week before the appointment Dad falls backwards and hits his head on the fireplace. He
refuses to go to the ER although the wound is deep and bloody. Somehow he lost his balance with his caregiver standing right there next to him – and she was unable to stop him from falling. He seems ok, though, so we all take a deep breath and just move on. We are all super concerned at this point about his confusion and his lack of balance. We discuss endlessly and come up with no answers. We talk about cirrhosis, we talk about dementia, we talk about urinary tract infection. Home health runs tests and rules out a UTI but it takes a full week and we are all irritated with the delay.
The morning of the appointment arrives and Aunt Patty and I load Dad up into the car. Dad is worried, of course, though he won’t talk about it. At least not with me. Dad and I have zero ability to talk to one another about things we are deeply concerned about. I believe it’s just us trying to protect the other one. We just don’t talk about the bad stuff. I want to talk to him about it, but I’m met with a shake of the head and a “let’s not talk about it until we know what it is.” And since I’m also afraid of the answers I easily let it go.
Apprehensively, we wait in the doctor’s office. Before he comes in an assistant pulls the PET scan up on the screen. I go over to look at it. I see bright blue spots, multiple spots, all over his throat. The biggest one right where the tonsil is. I know immediately what it means but I keep my mouth shut. When the doctor comes in he does not acknowledge the cancer. He feels Dad’s neck, he looks in his throat, he says “yes, we need to do surgery to take this tonsil out.” He doesn’t use the word cancer. He says we can do the surgery Wednesday. None of us ask the question. We leave feeling drained and discouraged.
And then we are told he needs multiple “clearances” before a surgery can take place. As we pace the floor and start making phone calls and appointments and with a heavy blackness over all of it, Dad has a seizure. He’s been sitting outside on the porch – something he hasn’t done in a while due to feeling so poorly – and his caregiver is helping him come inside. He sits down on his walker seat and she is maneuvering him into the house when he goes stiff and his eyes roll up and he starts to shake a bit. She calls his name and gets no response. She says his name again, and he responds “yes” but without making eye contact. She’s about to press his Life Alert button when he finally looks at her and stops shaking.
Home Health is called. They say we need to take him to the ER. It could be a brain bleed from the fall against the fireplace last week. I cancel my evening plans, load Dad up and we head out. At the hospital they check out everything. Ironically they do another chest x-ray. Dad is very dehydrated. They admit hjm, but after a few days of everything under the sun they cannot find a reason for the seizure other than dehydration and low vitamin B12 levels. At this point surgery on his throat has been delayed a week. Now we spend every moment on the phone trying to get the cardiologist to agree to give consent for the surgery based on the records from the hospital. It’s not like we can take him to the appointment. Finally after hell and high water we get it. The cardiologist signs off. Now another hurdle – Dad is going to rehab. Surgery cannot happen while Dad is in rehab. He has to be discharged first. Baby Girl and I are supposed to go on vacation and my aunt, my Dad’s older sister, won’t be available either. We get my brother to come down for the time we are gone but regardless I am still dealing with things over the phone – I can’t even remember what all it was at this point. Stressed and tired, I try to enjoy the beach with Baby Girl. We hang out mostly at the pool after sand invades her swimsuit and she cannot handle the saltwater in her face. I buy drinks from the swim up bar and let the sun bake me.
God is in control, right? He has to be because I surely am not.
More to come…