There are no cocky souls in the cancer ward

“Cancer seems a high price to pay for an innocuous-looking habit. You get into smoking and you are robbed of the last 25 years of your life. Some cocky souls will say, ‘Ah yes, but they are the worst 25 years.’ Nobody feels like that in a cancer ward. There are no cocky souls in a cancer ward. But there’s a lot of pain, not just of the excruciating physical kind that they shoot you full of morphine to smother. There are a lot of tears. All round. It is hard to say goodbye to the people you love. And it’s scary. Cancer wards have a way of knocking the cockiness out of you. And for what? Another cigarette?”
― Tony Parsons

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Dad has been having good hours and bad hours. Sometimes he complains of pain, sometimes it’s nausea. His regimen of pills already boggles my mind. We are doing our best on pain management but I wonder are we doing it right? His doctor has ok’d increased doses which has already sent me to the pharmacy for refills several times. It’s funny to head down the allergy aisle to the back of store and see the in-store informational video that I shot. Daddy called me one day when he discovered it, pushed the button to watch me no less than three times and even said he asked the pharmacist if he could take it home when they didn’t need it anymore! 

I have been out in LA pursuing my acting career for almost nine years now and just this year I really hit a new level that I know my dad was proud of. Many times I would talk to his neighbors, colleagues, etc and they would say “are you the artist or the actress?” My father was not a man to constantly praise me, but it seems my sister and I were often bragged about. 

Today was his appointment for some IV fluids which included some saline to get him hydrated as well as a medicine for the high calcium and a steroid to help increase his appetite. We were back at the oncologist’s office on time and walked into the chemo suite together.

If you have never been to one of these places, imagine this:

A room of lazy-boy type leather chairs all facing each other. It’s filled with sunshine streaming through the big windows that look out to the oaks that surround the building. There are a few TVs around tuned to the news, but not too loud. All the colors are muted tones.

Seems really nice right? Almost … pleasant.

Then you look around and you really see it:

People sitting in chairs with IVs hooked up to them, all trying not to look at each other, all trying not to look at the poison that is being dripped into them. Everyone is trying to put on a brave face and some have even mastered the art of looking serene. But the energy in the room is that of a collective intake of breath held right before you want to cry out. 

These are all people whose main goal right now is just fighting to stay alive. 

It makes me feel small.

It makes me feel so ridiculously grateful for my life and where I am in it right now. It makes me want to run around and hug each person and tell them, “you are some of the bravest people I have ever seen. I wish I could help you by taking this away in any other way than this.” 

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We leave dad for his hour of IV and mess around in the strip malls nearby.  Mom alternately cries and wanders around with no real emotion. The shock of it all seems to be setting in.  I try to take her mind off things for just a brief moment by parading around in the silliest shoes I can find on the sales rack.  Her eyes light up and she grabs some sexy bedroom kitten heels in bright red. It’s good to see her smile and think of something other than this roller coaster we are all currently riding.

This is why I came home.

 

 

Starting Tests

Daddy slept pretty well and woke up in an ok place – I got him to try some of the low-acid coffee I had purchased at Trader Joes and he seemed to like it. He even ate an egg and toast. My biggest plan was to try to get his weight up by any foods he would like best. He ate chicken I made, although he wouldn’t go for the full California-style tacos I had prepared. I wish I could get him to try outside of his comfort zone a bit more, I know he is a “meat and potatoes” kinda guy, but almost every time I have gotten him to try something new he has liked it. Oh well, these things take time. Both he and my mom are very resistant to change.

Today began the round of tests that would truly give us an idea of just how far this cancer had advanced in my father’s body. This afternoon was the Pulmonary Functions Study. I wasn’t even sure he needed it, just sounded like he was going to be blowing into some tubes – what does this have to really do with anything? He was very tired and went right to bed after breakfast for a nap and I wondered if it wasn’t just better to have him stay in bed and rest rather than go through the effort of getting to an office and going through what was supposed to be an hour-long test.

I decided to text my sister-in-law who is a palliative care specialist for children. In short time she got back to me and explained perhaps this test was necessary to see how strong his lungs were and how much he could take when it came to radiation or chemo. My mom and I talked it over and figured that we would wake him up around lunch time and if he had the energy, he should go.

My hours in between when daddy was sleeping were spent just sitting with my mom or running errands for her as she was too afraid to leave my dad. I ran to the grocery, to fill up cars, etc. During all of this we tried to think of what we could get dad to eat and drink when he was awake. He never was the guy to drink a lot of fluid – coffee in the AM, sweet tea for both lunch and dinner and maybe a coke or gatorade thrown in if it was a hot afternoon. I can bet I was the same way before I moved out to Los Angeles. Now, I carry a water bottle with me everywhere.

We were able to get my father up and get him to eat a sandwich with some tea and he said he thought he could make it to the test. He was being brave, you could tell he wasn’t feeling good…but he did seem to be feeling better-ish. At the very least a hell of a lot better than from when he was in the hospital already. They left me home to run some more errands and took off for the study.

When they returned dad went back to bed till dinner. So much sleeping…at least he is at home and able to sleep now, there is no better comfort than your own bed, right?

Checking Out

The next morning was the first oncologist appointment for my dad.  We were encouraged by how he seemed to be feeling better. He still wasn’t eating much but as those two days in the hospital progressed it looked as if he was getting stronger.   However, as we pulled into the hospital check out drive I noticed he was standing kinda hunched over again.  He got into the car gingerly and said he was feeling pretty nauseous.  All that supposed progress in the hospital was no longer.

As we drove out to the appointment we passed the county fair, it was to open that weekend.  I suddenly remembered a period in my early teens where I looked forward to that event.  The rides were exactly the same, you could already smell the mix of sausages and funnel cakes.  This, of course, did not help my father’s stomach and he looked on the verge of retching.  I tried to take their minds off of it by reminding them that mom’s photos were up for judging this year and when he felt a bit stronger we should go see them.  Unfortunately I think all I was doing was annoying them because it definitely seemed as if they were both very much on edge.  It saddened me to see them snipping at each other instead of just saying, “I am sorry, I am frustrated and scared and don’t know how to handle this situation.”

My dad said he thought he was going to throw up so we pulled into an abandoned hotel parking lot as quickly as possible.   There were three men outside of it, one looking like he was trying to show the property in hopes of selling it. “I am not going to puke on this man’s sale!,” my dad said.  So we pulled out and continued on, trying to make it to the doctor’s on time and intact.

We actually ended up arriving a bit early and I requested to pull in to the gas station to grab a quick beverage.  It turns out even though my dad had been on an IV drip he really wasn’t drinking too much other liquids, really wasn’t eating and turns out had only had some coffee that morning.  Now, I have had a sensitive stomach for quite a bit and know all of those things together make for a very acidic stomach which equals pain and nausea.   As I was getting myself a sparkling water I thought maybe if I got him some sweet tea, some crackers and since he always got some – a few lottery tickets.  Maybe this could cheer him up and make him feel better.  He always likes the scratchers, even won ten thousand dollars one time.

I walked out with my purchases and saw dad throwing up fairly violently behind the car.   I went over to mom and tried to say a few comforting words to her, but she was too upset to hear it.  The thing that was making her so distraught was seeing her husband in pain and not knowing what to do to help it, I can certainly understand that. I know if I were to see my husband even one tenth of what I was seeing my father go through I would be having a full on panic attack 24/7.

When my father finally felt a bit better we headed the block and a half to the oncologist’s office.  As we sat in the burnt orange colored waiting room I started watching the TV in front of me, but the super perky girls giving you healthy recipes and looking way too positive for their own good were getting on my last nerve.  All around me were folks in various of stages of cancer.  The super skinny and sad looking, the resigned slow walkers with scarves covering their heads where their hair used to be and the ones who looked like they were actually fairly healthy (comparatively speaking I guess)  Is this to be my parent’s lives now? Just a series of burnt orange waiting rooms?

We finally got called into a patient room for our appointment.  The doctor seemed nice enough, reiterated what we had figured out by now – the biopsy had revealed Stage 3-3b Squamous Cell Carcinoma lung cancer.  We asked several questions which he took time to answer and finally my dad looked at him and said, “is it terminal?”

“No,” the doctor said.

You could tell that was all my dad wanted to hear.   I was a bit confused, having looked up the high calcium symptom and seeing nothing but negative diagnoses related to it why he would tell my father this but then again I reasoned, perhaps the doctor thinks it could just be a symptom and not a sign of the end.  I certainly don’t have a medical degree in oncology so who am I to question this?

My dad’s mood was visibly lifted as we headed home and chatted about what we could have for dinner that night that he might like.  We passed the fair again on the way back and dad mentioned he would like to go there when it opened to see mom’s pictures displayed, see if she won a ribbon.   He seemed optimistic and was acting like he was feeling better physically.

It’s amazing what words can do to your body and mind, you always hear that saying “mind over matter,” well, I was definitely seeing the effect of this more and more on my father.

 

Sunday – High Calcium

Obviously this blog hasn’t been in real time.  I have been trying to do my best to chronicle the day by day of what has been happening, both because writing helps me make sense of it all and because maybe someone will find a nugget of wisdom or a bit of comfort in any of my words if they are going through the same type of situation.

I keep coming back to this page to write about this day and … I can’t.

I can’t because it was the day I knew my Dad was going to die sooner rather than later.

The day started out OK, mom and I figured out how to use the riding lawn mower and she cut the grass as I stayed inside and tried to rest.  I had a bit of a cold and didn’t know whether it was bad to be around Dad, but I didn’t want to leave either of them right now so I was trying to dose up on Emergen-C, DayQuill etc.   She decided to head over to the hospital to hang out and read the newspaper with him, the plan was for me to rest and run a few errands for her, then take over and watch the Gator Game with him.

When I arrived at the hospital he was sitting up in bed, some color had returned to his face. He was coherent and engaged with both the game, me, the nurses…etc.  He knew he had his appointment with the oncologist tomorrow and was looking forward to getting back to his own home with his own bed.  He could have been released that day but decided to stay overnight until the doctor’s appointment just to be safe.

The Gators won again and I got him to eat most of his fish and drink some more sweet tea.  It seemed to be looking up.  We even talked a bit about his panic attacks.  My dad doesn’t really know how to communicate or identify his feelings so he can’t say “I am having panic attacks because I am scared of what is happening.”   So I tried to ask him why he felt they were coming on but he couldn’t really admit why.  Maybe to do so would be to admit weakness somehow – that’s not Southern and that’s not my dad – so there you go.  Regardless, I knew why he was having them and that was all that mattered.  I tried to comfort him as best I could and hopefully some of the words I said made him think or made him feel better – who knows.    All I know is that it is more than OK to be scared in a situation like this, I don’t care who you are.

As I was leaving we talked about the doctor appointment the next day and he mentioned how he had wanted to ask the Dr. about this high calcium in his blood and how to fix that.  “High calcium?,” I asked, “what’s that? I’ve never heard of it before.”  He didn’t know really either so I promised him I would go look it up.

I got home and looked up this symptom – and promptly lost it.   99% of everything I could find said that symptom coupled with lung cancer means the person is in the last weeks of his/her life.   Luckily for my mom I was in the bedroom and she didn’t see my huge crying spell. Luckily for me my husband was available via phone to talk me through it.  He was trying his best to be positive and say that perhaps it didn’t mean that, don’t listen to the internet, etc etc.

But I just knew. Call it pessimism, dramatics, future tripping, whatever….  For all this that we haven’t known surrounding this sudden and rapid decline, this much I just knew in my heart. I am now prepared for the worst, but always still hoping for the best. But I knew I was gonna lose my father way sooner than I had ever imagined.

 

 

March Madness

I have to admit, leaving my dad at the hospital was a huge sigh of relief.  My whole life I have known him to be strong and very healthy, in fact one of the big jokes in our family is how he never even catches a cold.  So to see him this weak and in so much pain really scared me and left me feeling very helpless.  Surely the hospital would help this time – provided he doesn’t go and check himself out against medical advice again.

Mom and I decided to head over to visit him in the afternoon to spend some time. I was going to watch the Gators play as the started their quest for the National Championship title.  This is something my dad and I exclusively share, our love for Gator sports. (My  mom is always yelling “Turn the TV down! You aren’t actually at the game.”)  I graduated from the University of Florida and if you don’t come out of those four (or in my case, four and a half) years basically bleeding orange and blue you haven’t lived your full college experience.

I brought Daddy a tuna sandwich, some chips and some homemade chocolate chip cookies.  He had been complaining about hospital food saying it all tastes like plastic. I don’t know if this was more of an excuse because he was not hungry or if it was true.  Taking a look at the sad scoop of tuna salad that he had on his tray when I came in I tend to think it was more of the latter.

He seemed in decent spirits as we watched the Gators play in the SEC Championship.  There wasn’t much talking, more just hanging around with him.  He did mention the oncologist he had an appointment with later in the week, Dr. K, had stopped by.  So that, along with what his GP said yesterday before he was checked in gave us a bit of a clearer picture.

My father is diagnosed with Stage 3-3B Squamous Cell Carcinoma.  He has a bit of pneumonia and is dehydrated as well.  IVs are in and all we can do at this point is hope the antibiotics clear the cold and we can deal with the bigger issue behind it.  He has different doctor visits scheduled all week, culminating with a PET Scan to see if its spread (my new vocab word is metastasized) so I hope that he can rest and gain some strength for what’s to come.

I wonder if he knows how bad this actually might be but am afraid to ask.  I don’t want him freaking out any more than my mom, sister and myself are doing.  He doesn’t research things on the internet – we do, which can be a good or really really bad thing.  It’s all we can do to not future trip right now but the wait for tests and information is a whole new stress all its own beast.

The Gators live on to play the next round, in the post interview Coach Billy Donovan says, “We can only just take each game as it comes.”

Indeed Coach, indeed.

 

 

Back to SMH

I wake up the next morning, plan in my head for some breakfast that dad might like as I am padding down the hallway.  Only when I get to the kitchen he’s not at the bar stool with coffee.  My mom is just standing there, not really doing anything.

“Where’s Dad?”

“Your father woke up throwing up and has gone back to bed, I called the Dr. and we have an appointment to see him this afternoon.”

OK, that does not sound good at all.   I had no idea what I was walking into when I came home but this is looking far worse than I had already prepped myself for.  The closest brush I have ever had with cancer to date was my grandmother who died from colon cancer about nine years ago. I remember it clearly because it was the second year I moved out to LA and I didn’t have enough money to come back and visit her.  I still kick myself about that to this day, it would’ve been nice to have had a last visit, she was a cool lady and a strong woman.  This is all new to me and even though mom took care of Nana through the last year of her life it still wasn’t like this.  Nana had nurses, we only have each other right now.

He sleeps through most of the morning, only getting up about an hour and a half before the appointment.  He cannot walk upright and is short of breath even from the bed to the car and certainly from the car to the doctor’s office.  His head is in his hands.  Thankfully the doctor shows up fairly quickly.  After looking at Dad hunched over the exam table, his head down and in his hands, barely able to answer questions he says,

“I would like to check you into the hospital if that is OK with you.”

Well, after the last visit in the hospital which ended only a day and half ago under bad circumstances he was none to pleased to think about heading back.  It took about ten minutes of convincing but we were able to get him to agree and we left the doctor’s office and headed straight to admitting.

One thing about my parents (and by extension myself too) is they cannot understand or abide by inefficiency.  Dad was just in the hospital forty-eight hours ago and they couldn’t understand why he had to go through admitting again.   Here we are, answering the standard questions, my mother stressed to the max and my father in so much pain that he doesn’t care what he looks like and me trying to calmly keep everyone from going over the edge.  It was a tense hour to say the least and we were finally followed the volunteer and my father to the admitting floor.  As we crossed through the hallway to his temporary bed my chest tightened.  99% of the time being in this environment means bad things.

Shit just became real.

Day Two

I woke up, later than I wanted, and both my parents were already up. I walked out and they both gave me big hugs. Despite the initial protest from my mother, I knew the best thing to do was be here with both of them as this news begins to affect them.

My parents are the type of people who keep to themselves.  Sure, there are a few people that are just slightly more than casual acquaintances, but mostly it’s just the two of them in this big house living a daily life.

My dad is a salesman, he’s been at this my whole life. He loves it and he’s good at it.  Going out all day, meeting up with customers, networking and closing deals…that’s his bag.  He’s a charming fellow, I remember being in the car with him as a child and just hearing him work people left and right.  In a way we do exactly the same thing – I make a commission every time I book a job and I go days pounding the pavement making nothing but there I am – trying to be charming and work to make that sale.  The only difference is he’s selling heavy equipment and I am selling a version of myself.

My mom is a teacher, she’s followed in my grandmother’s education footsteps and taught elementary kids.  She’s gone from full time to substitution and now she consults for the tests that kids have to take yearly for progress.  I bet there are kids I can talk to now who would remember her and how they possibly shaped an idea in their young heads…I know I have teachers throughout my life who have done that for me.

But you see, they both have white collar jobs and my sister and I both work in entertainment and arts.  It’s been the oddest thing to figure out how the two of them raised and actor and an artist.  Nobody has figured it out yet.

The beauty of my job is the ability to pick up and leave.  I am nothing so great (yet) that it hurts my career to leave for any extended period of time.

My dad looks really skinny – I mean eighty year old man skinny. He’s weak, he’s complaining of his back hurting.  He has been seeing a doctor since he started feeling bad over Christmas and apparently has been losing weight like this over the past six months.  I am shocked that no one suspected this prior to now.   I am angry that no one suspected this until now and did some sort of test – would a few months had made any difference?  We will never know.

The day seems to go fairly smooth, mom’s and my concentration is on getting his strength back.  There’s also a matter of dealing with paperwork that allows my mother to be able to call and talk to medical people on dad’s behalf.  I understand HEPA laws and why they are there but I also think when you are desperate and confused it’s a really mean thing to hear “sorry, I can’t tell you shit.”  And now I see exactly how same sex partners feel.  They won’t even tell a spouse anything without the proper papers so imagine how you would feel if you weren’t even technically recognized as a life-partner? Helpless indeed.   Do yourself a favor, we found them online on our state’s government website – get signed a durable power of attorney, a living will, a designated health care surrogate and a DNRO.  When so much is out of your control you need to take the little that you can.

I made Dad California-style tacos, he ate more than he has been, but still it was not near enough.  We dosed him up with some pain pills and sent him to sleep.  Perhaps this bit of food and some proper sleep (he couldn’t sleep in the hospital, who can really? ) will make him feel better tomorrow.

March 12, 2014

I woke up in my sunny apartment in Los Angeles. It was going to be a fun, busy day; I had an audition for the hit TV show “Scandal,” then acting class and then head directly to my day job.  I turned on my phone and hopped in the shower.

Twenty minutes later, while putting on my make up my phone beeped with both voicemail, text and email:

Blow #1 – my audition had been canceled.  The role had been given to another actor who had already been on the show so they could create a recurring character.  Disappointing, yes, but this type of thing happens all the time.

Blow #2 – my father, who had been in the hospital with a nasty bout of pneumonia had checked himself out.

He had been diagnosed with lung cancer.

My world immediately went silent.  I had only experienced this once before, when the first pet I ever had died.  It’s like the wind dies and the birds cease to sing.  The cars that were only a moment before so loudly passing outside my windows were no longer rumbling by.  My husband pulled me to him as I said, “Daddy has cancer.”

Within three hours I had told my mom I was on my way. I spoke to my agent and manager to let them know the situation, asked my day job for indeterminate time off and hopped on the next flight out.  The flight seemed so strange, I guess I became hyper-aware of those around me.  There was an old lady coughing steadily two seats behind me, I started to think “gosh, she’s gonna cough a lung up” and immediately teared up.  As I flew across the country in the middle seat I had to fight not to cry. Thoughts would just pop up, the mind runs away with you no matter how you try to control it.  I got off the first leg with an hour in between and as I deplaned I noticed a woman with her phone plugged into the wall in the hallway. She was sobbing as she talked on the phone.  I wanted to hug her – to make her feel better and honestly I needed a hug too.  But I guess you can’t randomly hug people in the airport so I continued on.

Having not eaten all day I found myself chowing on wings and beer, no make up on and trying to figure out how to rent a car to get home, to make it all more complicated there seemed to be no one-way reservation.  I guess it was Spring Break in Florida and everyone wants a rental car.  I was half-halfheartedly watching the sports channel in the restaurant and my commercial came on.  My face turned beet red and I put my face back into the wings. I am sure no one was paying attention but it was a jolt to me – just this morning my life seemed so much lighter.

I arrived at midnight, was able to secure a one way car (by having a three day reservation) and drove the hour to my hometown.  By 1:30AM I was in bed all the way across the country and hoping like hell that I would be able to mentally, emotionally and physically handle whatever came my way when I woke up in the next morning.