Month: August 2021

I remember now. It was about the blood thinners Dad was on. We had to be sure he was off the blood thinners before the scheduled surgery for the Wednesday after I returned. Who could take him off of them? Certainly not the rehab – they needed a doctor to put in an order. We spin around and around for a full day before my brother gets the answer we need. No more blood thinners as of Tuesday, a week before the surgery. At ease, I order another drink from the bar and go back to baking.

I return on a Thursday and Dad is doing ok – he’s alone a lot but he seems to be coping. He’s going down to the dining room for meals (assisted of course), and he’s eating well. He’s watching HGTV non-stop until all my enthusiasm for the channel has been thoroughly squashed. Not only is it on every single time I am there, but whenever I call him you can hear it perfectly in the background, as it’s so loud. Turn that shit down, Dad, I tell him. He likes the one with the two redheads – Mom and daughter. The mom is bat-shit crazy he tells me. And the daughter ain’t bad to look at but she’s pregnant in every other episode. 

On Monday he’s released from rehab and Baby Girl and I go to pick him up. We stop at McDonalds and get fries, which he eats in between coughing spells. The coughing is terrible – a dense, dry attempt to get something up. It’s a good thing I have a towel in the car as eventually he has to spit everything out. I am wondering what’s up as I haven’t heard this strange coughing before. He hacks and chokes all the way home. Aunt Patty is due to arrive again later that day and I happily let her take over as I am one hundred percent exhausted.

On Tuesday Aunt Patty takes Dad to his pre-op appointment which apparently goes fine, and I am told that Dad has to be there next morning at 6 am. EGADS. This means a 4:30 am wake up call for me, which honestly isn’t that bad – horse show mornings call to me. I love the sky at that time of morning, and the stillness and the chill (well not in August). Like nothing at all has happened yet and anything is still possible.

A couple hours after dropping them off I hear that the surgery goes well and I return to take them back to the house. Dad is tired of course, but functioning. We are optimistic. The biopsy results should be back by Monday. Aunt Patty can’t get Dad to eat that day, though, and every time he takes a drink he chokes and coughs. We think maybe just soreness from the surgery, maybe swelling? We don’t know yet that the tumor has basically shut off his esophagus. The epiglottis is not able to function properly so anything that goes in, goes into his lungs.  These are details that we are unaware of as yet. 

By Thursday Aunt Patty is really concerned about the congestion. We get a call in to his doctor and procure some antibiotics. But when the home health nurse comes later in the afternoon she tells us his oxygen levels are way too low. She says we have to take him to the ER. He is extremely congested and not getting enough oxygen. Aunt Patty takes him as I stand by at home. 

This is when they stay in the ER for nine hours before they get a room. This is when we find out a whole lot of things we didn’t know. Like he has bacterial pneumonia from aspirating his own saliva. Like his throat is basically blocked. Like he’s not getting enough oxygen because he can’t breathe properly. Like things are way worse than we thought. 

That was a week ago. So much has happened while Dad has been in the hospital, but on the other hand nothing has happened at all. We learned on Friday – thanks to the hospitalist doctor that called the ENT – that Dad’s cancer is called squamous cell carcinoma. We all rushed to google it. It’s just a type of throat cancer that is currently located in the tonsil. Nobody has ever said that there is more than one tumor, or spot, even though I am SURE I saw more than one on the PET scan. It has been called tonsillar cancer, throat cancer, glandular cancer. I was told that the glands are continuously excreting cancer cells. That it may not have spread to the lungs but then again it may have. The nodes are too small to do a biopsy on. Thursday through Saturday was spent trying to beat the pneumonia with antibiotics, watching HGTV and wondering about nutrition as he is not allowed to have anything by mouth. 

Sunday I am with him for an hour – I try shaving him with an battery operated razor I have just purchased at Walmart. I don’t know what it is meant to shave but it certainly isn’t hair. We bemoan the lack of functionality in today’s electronics. Cheap shit from China we agree. I say I’ll take the damn thing back. Dad suddenly looks at me and says “Do you know what’s wrong with me?” I say “well you have pneumonia, Dad.” He responds with “well that beats the hell out of cancer.” I swallow hard and say “you have that, too.” Dad just looks at me and then looks away, eyes closed. We don’t say anything more about it. I saw the pain in his eyes, though. 

Sunday until Wednesday was spent watching HGTV and waiting for the PEG line to be placed. As each day came and went Dad got weaker and weaker. Clinimix was given (lipids and fats) through an IV but no protein. By Tuesday when Dad was thrashing around and hallucinating he didn’t even look at his phone. He didn’t want to talk to me, as if he just couldn’t make sense that it was me that was calling him. Aunt Patty tried but he showed no interest. I didn’t go to visit him those two days as I knew Aunt Patty was leaving on Wednesday and I’d be with him all day. So I try to get things done at home while she’s still there. Aunt Patty texted me Tuesday night and told me there were days in Hell better than today. I’ve never heard or seen Aunt Patty in tears but I imagine she might have been.

We had no idea what was coming.

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…