Today is April 1 and we are kicking off Head and Neck Cancer Awareness Month. So i thought it fitting to share my 'creation story' with you today. I wrote this up for my friend Andrea Hollowell No (check out her fab Lary blog https://andreano811355070692.wordpress.com/ ), who is collecting stories of the experiences of women Lary's. I wasn't expecting it to be so mentally exhausting. After writing it stream of conscious, i haven't had the strength to go back and edit it. So here it is in its raw state.
April 2021 - Florida
We stopped at a local shop to get some breakfast burritos. Larry laughing at me as I masked up. Floridians apparently have long forgotten or never acknowledged Covid. No way, I’m still freaked. Let them look at me.
My cousin is a dentist, ya know, I’ll ask him about my jaw.
“So Lary, I have been having this jaw pain. I mean I’ve had it off and on for a while, but it seems to be getting worse. Do you think it could be TMJ, I was reading about that, and I mean I always clench and grind my teeth in my sleep.”
“Yeah, totally could be. You should definitely get it checked out. If it is TMJ you want to get it treated.”
I mean Jesus Christ, I guess I haven’t even seen a dentist since well before Covid so that was like what a year or year and a half ago? My old orthodontist, Dr.Jaw actually treats TMJ, perfect! I guess it’s safe enough to go back to doctors now.
July 2021 – Dentist office
So, I’m having pain back here, mumbling with hands in my mouth. Like under my tongue, no more to the right.
Hmmm… I see some bone spurs.
Bone spurs? Whatever. Maybe it’s my TMJ mouthpiece rubbing, I’ll ask Dr. Jaw.
August 2021 – Costa Rica
My dad has cancer. The big fucking C. They are going to remove his bladder on September 9. So, I mean I knew this was the calm before the storm but fuck me. This is it…. right here in paradise. This gorgeous pool, the afternoon storm clouds are starting to gather above us. I feel numb. The blood is leaving my head. Miguel hugs me, the girls hug me. Fuck fuck fuck. Okay, I’m going to enjoy the shit out of this trip.
The responsibility of wrapping up my mom’s life in Maine, getting that house sold, getting her finances figured out, getting her to Arizona to memory care. That can all wait for the moment. Be here now. Enjoy this Sonya because shit is going to hit fast and hard.
September 2021
I’m not leaving my dad alone in this damn hospital. They are morons, I tell you. Dad says I should go home, but I’m hunkering down here on this bench. Covid policy my ass. They just don’t want to deal with families, and this is as good an excuse as any. I sleep lightly. My dad has an urge to use the bathroom through the night, so we are up and down, moving the IV lines. But they got it, I mean they got the tumor, and it seems like clean margins. We are good, this is going to work. Dad is only 74 so I mean thank god for that.
I stumbled through work for the week operating on the broken sleep. I know I’m not being that efficient, I’m distracted. So much to do prepping for the trip with mom. But I think we have it figured out. I have my lists.
Grrrr…. This jaw pain. I mean I thought the botox injections worked but I don’t know. Bloody hell.
October 2021
For the fifteenth time, “Mom, put your mask back on. You have to cover your nose with it. The airplane requires it”
I glance at Siena. We got this, we got this, we go this. Charlie has been fairly good. Okay, whatever, he pissed on the airport carpet after we spent what, 20 minutes in the dog room? I mean he can barely walk poor dude. I’ve got his oncologist appointment set up and Ela is going to help with his chemo meds and diabetes meds. Shockingly mom has been going along with this so far. Yes yes, I told her she is ‘visiting us’, I just gotta get her to the care facility, one step at a time.
-
“Stop Miguel stop, I can’t talk anymore, please stop making me talk, my face hurts so much, just don’t make me explain the plan again…”
I haven’t even been in the office for two weeks. Yes, the trip went smoothly. But the last two weeks…. Hacienda Care, I mean I showed up to try and get mom to Bingo and all the aides were like ‘what bingo?’. Well, it says bingo on the schedule. They looked at me like I was insane, oh you just print the schedule to mail to the families to make us FEEL like you are entertaining our melting brain loved ones. That place was so pretty on the outside…well it should be for what they were charging, but it didn’t translate to good care. Lesson number one on memory care facilities.
I mean I thought the small group home might be the answer. Then that woman, the manager. Calling me to tell me my mom was out of control, and I needed to get her. I’m sorry, she has Alzheimer’s and was just institutionalized, of COURSE she is confused and stressed, that’s why I am PAYING YOU. I can’t do this; I can’t do this. One more day and this third place has to work, it has to, because I can’t deal with her in the house. This isn’t sustainable. I can’t work, my head is fucking exploding, I can’t talk anymore…I swear it’s all this talking that is making my face hurt. The pain is radiating across my forehead now and across my lower jaw….
November 10, 2021 - Dr. Jaw’s office
‘Under my tongue, it feels like something is back there. And look when I stick my tongue out, its crooked.’
‘Sonya, your face isn’t symmetrical. It wasn’t symmetrical when you were 20 and it’s not symmetrical now’
OUCH. What does that even mean? I gotta get back to work. But I swear something is weird here. I’m delusional but it seems like I keep dribbling when I sip my coffee. I don’t know….
November 18, 2021 – Dentist office for cleaning
“Do you see any irritation back there, something hurts at the back or under my tongue, it feels irritated.”
“No, I’m not seeing anything” – Hygienist.
Thanksgiving 2021
The girls are downstairs finishing cooking. Thank god, I couldn’t do it. OMG, I think I’m going to vomit again. My face hurts. I will just get up when dad and Linda get here.
“I’m not staying long Sonya, I don’t feel great either, just go lie down”
“Dad I’m sorry”
Jesus, dad doesn’t look good. I need to figure out what is going on with him. Mom seems to be settled now, so I need to spend some more time with him now …..later, I gotta rest.
December 1, 2021 – Dr. Jaw’s office
“look at my tongue, it’s really crooked and half of it looks smaller than the other half”
“let me see. I don’t see anything. um, wait. there is something. There is something under your tongue. Maybe it’s just a cyst. Sonya, give me a minute I want to make a call to a Maxo facial friend of mine.”
“well, I need this like I need a hole in my head!”
“let me see if they can see you”.
I wait.
“what are you doing right now? Can you drive straight there. They are between patients and can squeeze you in if you go right now”
“yeah, sure okay. I can go.”
What the fuck is happening. I mean he wants me to go this minute, this isn’t good. This isn’t good.
Maxillofacial office.
“You need to see an ENT right away. This is probably just a cyst, but it could be a tumor, but you know, just to be safe, get to an ENT right away.”
They are both leaning over me. I don’t like the expressions on their faces.
December 4, 2021
Weird. Something in the back of my throat. It couldn’t be. I am going upstairs to check. I don’t want to freak everyone out.
Blood. Blood in my mouth. I’m bleeding. In my mouth? Get my jacket. Get my shoes. I walk swiftly down the stairs.
“get your things. We have a problem. We have to go to the emergency room right now” I say in my mom’s calm serious this is a fucking emergency, so I won’t show emotion voice. I can see the panic on their faces. Someone grabs a basin. I spit, I spit, maybe its stopping…..?
-
This is what death looks like. The blood is everywhere. I can’t “help”, choke sputter “me”. Siena’s face, she is terrified.
I
Can’t
Breathe
This
Is
Death
December 6, 2021
I am alive. Tubes. Mouth. I can’t talk. I have a tube in my mouth. I’m intubated. I’m alive. Cancer. They found cancer. Surgery. They are going to do another surgery.
December 2021
We spent December trying to sort this out. Seeing ENT’s. I mean I didn’t even know what ENTs did before. I thought they were like if you needed your tonsils out or something? We wait for new pathologies. The girls are on the phone non-stop trying to get different doctors across the country to see my case.
One thing is clear. It’s a large tumor. Right under my tongue. Right where I said I felt something. Yup. And it has to be removed. All of it. Including my Tongue. The whole tongue. It’s larger than it appears on the surface. The tongue muscle extends deep under what you see. The WHOLE tongue.
December 24, 2021
“I don’t care, we are going to see my dad. I have to get eyes on him. Linda says he can’t get up that he is not speaking coherently. I’m going. “
We are all there in the living room. Dad isn’t right. This isn’t right. The ENTs argue and say just wait and take him in tomorrow. We insist. They argue and say they are going to take him to Saint Mary’s hospital. Absolutely NOT, his doctors are at Banner. Finally, we call Roger, it’s his fire stations ENTs, and we get him on the phone with the dude. What a wanker this guy. He changes it around. Siena is going to go with my dad.
December 25. December 26. December 27.
Dad’s cancer is everywhere. The immunotherapy failed. It failed?
“So, we are waiting for me to die”
We took dad home.
Jan 6, 2022.
My dad is dead. 75. His doctor said the cancer was gone. They said it was UTI’s. He is dead. The cancer was everywhere.
We leave in 9 days.
In 19 days, they will remove my tongue and whatever else may be contaminated with cancer.
We can do this. We will do this. We don’t have a choice.