The Travellers

This is the first post of summer. It's long, so buckle in.

I have never been one to travel. As I have said before, most of my traveling is done from my coffee pot to my front porch. We usually take a yearly trip to see Jay's dad in Pawhuska, but that's usually about it. I did go on a cruise to Mexico once, but that was in my early twenties, and the details on that are pretty fuzzy.

Last summer, however, I did get to go on a trip of a lifetime. Not my lifetime. Dad's.

In early May, Dad was still going to the oncology center for chemo every couple of weeks for palliative doses. We wasn't investing in a cure. He was buying time.

Dad had been told repeatedly by others that he didn't need to stay in Wichita Falls for treatment. They insisted that he needed to go to Dallas for treatment, that that's where the experts are. To appease the armchair doctors, he did go once, where they told him that his doctors in Wichita Falls were treating his cancer in exactly the same was as what they would be.

I have to make a short PSA here concerning treatment. If you've somehow stumbled upon this blog because someone you know has lung cancer, I hope you take this piece of advice to heart: Let the person with the cancer take control of their life. It's their life. Not yours. It will be difficult because sometimes they won't make the choices that you want them to, and that's okay. Again, it's their life, not yours. Now that we've cleared that up, please proceed.

Dad normally would text us after an appointment with his doctor after they had reviewed his tumor markers. I think in sending a text rather than calling, this kept him in control of the emotions he had.

It was after his May 3rd appointment that I received a text that his tumor markers travelled to over 9,000. Dad had never had tumor markers that high before. Ever. A PET scan was scheduled, which only told us what we already knew. His doctors here, as with anywhere else, had to make the impossible decision to tell Dad that there was absolutely nothing else that they could do for him. They apologized. They cried. They told him goodbye.

They might have been done, but Dad wasn't.

Dad was a thinker, a planner, a problem solver. To him, cancer was just another job to do. A job that, no matter how hard it seemed, must have a solution. Dad called the Cancer Center Treatments of America, tangled with the insurance company, and got an appointment. I say tangled because, even though Tulsa is closer, insurance would only approve of him traveling to Phoenix, Arizona. One is a three hour road trip, the other is an airplane flight. Makes total sense, right?

Dad's appointment was scheduled for the end of May, and he and mom prepared for their trip. Dad had only flown twice: once in 1975 for a high school senior trip, and he didn't necessarily look back on that moment with fondness, and one other time to go pick up a fire truck.

This trip would prove most difficult as mom developed a blood clot in one of her legs and was still struggling with the after-effects of Chronic Lithium Toxicity. That is a whole other topic worthy of its own post. She was in such bad shape that there were doctors and nurses asking my mom what kind of cancer she had. They all assumed that she was the patient. This trip was incredibly hard on all of us as none of us every really left home for long periods of time. It genuinely felt like we would never see either one of them again.

They returned June 1st, just in time to surprise me at a birthday party Jay planned. As soon as they walked in, I had what I can only describe as probably the same feeling I'll have when I see him again in Heaven. It was a moment of shock and utter disbelief that I was actually seeing them again.

Dad helped mom to the table, and he sat quietly the way he always did. This was the last birthday party for me that he would ever attend.

Over the next week, Dad described the labs and tests and questions that they asked, he explained that he would have to go back in July for them to do a liver biopsy to see if we were still contending with lung cancer or if he had developed a secondary liver cancer. Mom was still in no shape to travel, so it was decided that I would travel with him as a caregiver.

Over the next few weeks, we joked about my anxiety because I had never been on an airplane before.

When the day finally came, I wanted to vomit. Yes, I was petrified of flying, but I was even more scared of knowing that I would likely hear what I already knew deep down: this was it.

We sat in the airport people-watching and Dad gave me varied bits of advice concerning take offs and landings. I did my best to at least appear to be brave. We boarded, took off, and I was immediately transformed into a toddler who had just tasted his first ice cream. It was incredible seeing the clouds just meters away from my window, and I wondered if Dad was smiling at the back of my head in elation that I was getting to experience this first with him.

We landed in a blistering hot Arizona, speed walked through the airport, and hopped onto a shuttle to our hotel. We called and checked in with Jay, mom, and the kids, and abruptly went to bed.

A detail that I've left out that's crucial here is that, for the last couple of months, Dad had been steadily gaining weight in his abdomen. He would subconsciously grab at his side, then dismiss our concern when we asked. I mention this now because the hotel had put us in a room with one queen-sized bed. I went to bed in fear that night because I was petrified that I would accidentally kick him in my sleep.

We awoke early the next morning, and checked in at CTCA. We would have pre-op, then return the next day for the biopsy. The biopsy wouldn't take long, he would spend a couple of hours in recovery, then we could head back to the hotel, then the next day we could go home.

We met with two or three doctors and a nutritionist. When his main doctor came in, Dad matter-of-factly asked, "What are my numbers?"

She said, "You mean your tumor markers? Let's see." in a most confident voice.

A few clicks from her keyboard, and her voice changed into a near whisper. She said, "Well, I show here that your numbers were 19,000 when we did your initial labs."

I looked from her to Dad, who was looking at me. We then simultaneously looked down at the ground. We both knew what it meant. We never discussed it with each other, and we didn't breathe a word of it to each other ever again.

We left that afternoon, suffered through a dinner at Cracker Barrel, then returned to the hotel. Dad laid down for a nap, and I walked across a Sahara of a parking lot to a Starbucks and a Target. In my anxiety of just thinking about packing and flying, I managed to leave my bag of undergarments at home. It would have been one thing to leave them and be sleeping in a room alone, but there was no way that I was going to sleep commando while sharing a room with my Dad.

When I returned, Dad was awake and had been looking for me. He smiled when I explained why I had gone to Target,

The next day, we returned for the biopsy. When they finally called me back to recovery, Dad had already talked one of the nurses into bringing two chocolate donuts, one for each of us. I watched the monitors rise and fall and spit out paper banners of heart rhythms into a trashcan. When Dad wasn't looking, I took pieces of the banners and folded them up into my purse.

A couple of hours later, and we were headed back to the hotel for another nap. Dad tossed and turned and moaned out of pain for the rest of the evening. Because of the amount of pain that he was in, we had to go back to CTCA to do a sonogram to make sure that he wasn't bleeding internally from the biopsy. He wasn't bleeding anywhere that they could tell, he completed a round of chemo, then we hustled back to the airport just in time to board.

The flight back was quick, and when we made it home, we pretended like we'd just been on a business trip. We talked about his appointments in a sterile, non-emotional way the way you'd discuss the weather forecast. We didn't share our secret of the tumor markers.

When I look back at this string of moments, I think it's here that I began to separate my emotions as a daughter who was losing her dad to my duty as a daughter helping to take care of her dad.

In those moments and many others to come, I had to put on a brave face, to be the one to dissect all of the information in an impartial manner and dispense it in a way that others could understand. This is the caretaker's burden. Your time to process, to cry, and grieve will come much later than anyone else's.

When I look back on that trip, even in spite of the bad news, I still smile.

I smile thinking about getting scanned at airport security my very first flight.

I smile thinking about the forgotten underwear.

I smile thinking about Dad looking at me as I sat in awe of puffy clouds passing outside of my window.

I smile knowing that those were the last few moments that I would get alone with my Dad before he left.

Intro: The Beginning of the End

It's closing in on the end of summer, although you can't tell by the weekly forecast of century-sized temperature readings for this week. I have come to detest this time of year. Not for the heat that it brings, but because of all of the memories associated with the season.

As a child, summer was a time to be carefree, to splash around in homemade swimming pools made from cattle troughs, to fish with Barbie and Snoopy fishing poles, and dancing at rodeo dances with  your Daddy.

As a young adult, summer used to be filled with rec softball, taking the kids to swim, and sitting around a back porch talking until you had to stay the night due to sleepiness.

No, I don't hate summer for these things. I hate summer because now every summer will be permanently melted into a puddle of memories from last year.

I haven't written or even discussed at length everything that transpired last summer. I guess maybe I felt that if I really let everything out into the open that it would finally make it real and final.

I am not even sure why I feel compelled to write about it now. My only guess is that if I can write my way through it, summer will be over as quickly as possible.

How I Spent My Summer Vacation

There is a cool breeze this morning, which is quite a surprise for the end of July. I'm up early savoring my last bit of summer before the grind of working starts  back in a couple of days, and I've just finished going down the rabbit hole of the internet.

I love that the world wide web has made information so accessible, but it has done nothing lately but fuel my borderline hypochondriac-like tendencies.

A few weeks ago, I sat in a doctor's office to have my throat checked out. I have been experiencing chronic throat clearing, repeated bouts of strep and throat infections, and I kept having this feeling like something was preventing the right side of my throat from working.

Let me give you a run down of how this situation unfolded:

Brain: "Quick! Search the internet and Google your symptoms!"

Self: "Wait! You're probably just stressed out."

Brain: "You have cancer according to the internet! Schedule an appointment with a specialist before you die!"

Days go by like this: you diagnose yourself, then proceed to worry until you have given yourself every symptom WebMD said you might have. You have seventeen browser windows open with definitions to miscellaneous medical terms and conditions, and, before you know it, you have them all.

How I spent my summer vacation: getting my online degree in diagnosing phantom illnesses.

Back to the Dr.'s office.

I explain my symptoms, and she asks me a series of questions. I'm examined with a nasoscope (told you I've looked up too many terms!), and the PA tells me that I have silent reflux, my adenoid tissue that I'd had removed as a child has regrown and has debris in it, I've got redness and swelling in my throat, which is probably caused from the silent reflux. She tells me that she's going to run her observations by the doctor, and she'll be right back.

Awesome.

I wait, all the while thinking that this is where she goes and tells the doctor that she sees a giant tumor in my throat, and she just doesn't want to break the news to me.

As I sit in the chair, I have this sensation that I've just been stung in my right cheek by a bee. I moved my hand to my face to swat whatever was there, and there's nothing there. A fraction of a second goes by, and I have a series of these stabs to the same place. I doubled over in the chair, and thought, "This is it! This is how it ends!" This pain lasted for only about ten seconds, then was gone.

Self: "That was weird. Maybe the PA had hit something on her way down with the scope. Maybe it's the numbing spray wearing off. They're going to think you're a psycho if you say what just happened."

I gather myself, shrug off the thought that I just experienced a small stroke, and I continued to wait.

A few minutes later, she and the doctor return, where he goes ahead and scopes down my nose into my throat for a second time.

"Mmmm hhmmmmm."

"Okay, bite."

"Swallow."

"Okay. Well, You seem to have a benign looking papilloma in your upper mouth. You have quite a bit of redness and swelling at the back of your throat. Your adenoid tissue can regrow if you had them removed when you were quite a bit younger, and that could be causing the feeling of having something stuck in your throat. Do you snore at night? Cough? I certainly do think that you have silent reflux. We will start you on Prilosec and Zantac because I don't want to jump to surgical options to remove the adenoid tissue if we can control the reflux with medication. I'm going to give you a list of things that you can do to help control it. Schedule a follow up for six to eight weeks. Have a great day!"

Marvelous. Silent Reflux. I check the list of things, and everything this list says to avoid, are all of the things that comprise my daily food pyramid: chocolate, coffee, garlic, spicy food, tomato sauce, etc.

Self: "You can do this! It's only food."

Self: "But it's coffee! Forget it! Coffee is worth the suffering!"

I go home, and I feel satisfied. I'm not dying. It's only reflux, and apparently, it's good that it's silent because that means I don't have the typical heartburn and indigestion that typically comes with reflux.

Moving on.

The next day, my coworker and I have scheduled a day out of adult time to unwind, do a little shopping, and just get out of the house. We spend the day getting lost in coffee and clothing racks, and I return home to prepare for taking one of my kiddos to volleyball out of town. As soon as I sit down with a refresher cup of coffee, the phantom bee strikes again.

Again, I bring my hand to my face to kill my attacker, and nothing's there. Another second goes by, and I'm hit with another series of stings.

Enter the rabbit hole.

Self: Googles "stabbing pain in cheek."

Internet: "Trigeminal Neuralgia."

I spend a few minutes reading about this oddball illness, and I think it's ludicrous, but I take some advice from one of the forty eleven message boards that I read, and I start a note to keep up with when these pains have happened, frequency, duration, activity while they happened, wind speed, barometric pressure, shape of the clouds, how I fixed my hair, whether or not I had on makeup. Okay, not quite all of that, but you get the picture.

Every day that week, starting on Monday at the doctor's office until Thursday, I experienced these same shocking, stabbing pains in the exact same spot on my face once a day. They never occurred at the same time of day, but they were always in the same place. On Friday, I had two in one day. On Saturday, I again had two in one day, with the last one happening as I was finishing supper, and it made me cry.

Yes, the pain made me cry, but even more was that I couldn't hide it from Jay as I had all week long. I had to spit out my food, hold my face, and wait for it to pass.

Jay: "Uh, I think it's time you went to the doctor."

Me out loud: "It's just a pinched nerve in my jaw."

Self to self: "I've already diagnosed myself. It's Trigeminal Neuralgia. TN for short. It can be caused by lots of things. Some of them scary. No, I don't want to go to the doctor, but you know as well as I do, that the longer you put it off, you're going to continue to Google "Trigeminal Neuralgia" until you've convinced yourself it's caused by the scary stuff."

Sunday goes by, and I take note that I've successfully had a full day of no phantom bee stings.

#winning!

I go ahead and call the doctor the next day on Monday, and, as politely as possible, request a referral to see a neurologist, as suggested by the above mentioned forty eleven message boards. Typically, TN in patients younger than forty should have an MRI done by a neurologist to rule out the scarier stuff, such as Multiple Sclerosis. This request is quickly denied because I had not ever seen my doctor for this specific complaint, and I have to be seen by her first before she will make a referral.

I get in on Thursday, and I had only had one more episode on that Monday that I had called. The doctor walks in, asks me about my symptoms, I tell her what I think it is, and she then proceeds to do what I never expected her to do: she agrees with me.

In her most thick accent: "Zes, I do sink zhat zhis iz vhat you are experiencing. Vhat I vill do iz give you a prescripcion for zhis, and you vill come back vhen I come back from vacacion in seventeen days."

She leaves the room, and I leave the clinic.

Self: "Uh huh. I knew it. Thank you, Dr. Google."

I go home, and I subsequently start to Google my new diagnosis. I start to read, and I realize then that she never mentioned a referral. She never mentioned an MRI. She did prescribe me one of the medications that are used to treat TN, and I think, "Well, it's a start."

Fear sneaks back in that I have some insidious disease that my doctor hasn't diagnosed yet because of the rabbit hole I've been periscoping down.

I think back on the last year and try to recall anything and everything that could be related to the umbrella of nerve issues and TN. Over and over again, MS keeps popping back up in my head because I am younger than forty. Again, your brain goes into overdrive until you've convinced yourself through a doctor's visit that you either A. Don't have it, whatever it is or B. You do have it, whatever it is. Through enough reading, I know that this supersonic brain activity won't cease until I've had an MRI to rule things in or out either way.

I reach out to a friend that has MS, and we swap stories of symptoms.

I think back to the last year to see if there was anything that's happened that I can recall that could be related, and I start to scare myself.

I've had repeated episodes of walking down the hallways at work, and I've had to stop walking when I experienced what felt like a sledgehammer being slammed into my lower legs. I've had the same feeling in my upper arms. Random tingling. Fatigue. Oh, Lord, the tiredness! But who isn't tired?

I think about the likelihood of me actually having MS, convince myself I don't, and I move away from MS. I start to only focus on TN. Have I had any other pain or weird sensations in my mouth?

Why yes, yes I have.

At the beginning of this summer while visiting my parents, I had the oddest feeling in my mouth. At first it felt like I had just been burned on the inside of my left cheek. I pushed my tongue to that side of my mouth, and before I could move it again, this burning intensified to something that I can only compare to the feeling of eating a mouthful of ghost peppers. I gulped down a bottle of water, swishing and swashing, trying to get it to stop. After about a minute, it did, and I went on about my day.

Fast forward to about two months ago, and I'm standing in the kitchen talking with Jay, and I get this, what I can only describe as a spasm in my tongue. It felt like my tongue was twisted sideways in my mouth, and I couldn't speak, only mumble, "Ow! Ooooowwwww!" Jay looked at me as though I was nuts. I felt nuts. Again, it didn't last very long, and I went back to talking.

So, here we are today. My brain still hasn't quieted away the feeling that something else is going on combined with the feeling that maybe nothing is going on. Maybe it is all just nerves. Backfiring and misfiring. Crossing and shorting out. Maybe it's stress. Again, maybe it's nothing.

My fear is that I will look back on this and know, "that's when I noticed something," and I was just crazy enough to actually write it down.

My hope is that I will look back on this and think that I did all of this worrying for nothing.

Rolling Fog

Today is the last day of our Spring Break. As usual, I spent the week doing absolutely nothing, which I loved, then waking up today totally regretting having done nothing. If you rewind a couple of months to Thanksgiving and Christmas, well, this would have been the same song and dance.

Wake up. Do nothing. Go to bed. Repeat.

This schedule works for a hermit living in a Hobbit hole on some rocky, emerald mountain next to the sea who has no family or home to take care of and the only thing on their to-do list for the day is to drink copious amounts of hot coffee while watching the fog roll in and ponder about life's great mysteries.

Oh, to be a Hobbit.

The more I think about it, I guess even Bilbo Baggins wasn't content living in the Shire. Why leave the safety of your home and pursue adventure if not for boredom on some subconscious level?

But I'm not bored: I'm just exhausted.

I sat on my porch, soaking in the last quiet morning of doing nothing, and I watched the fog in the field across from me. It tip-toed in a gray flamenco dress, whooshing by me, and before I even realized it was around me, it was too far away for me to reach out my hand and ask it to dance.

I thought about how we always say we're "in a fog" about things when we're too tired or too worried to make any sense of anything. That everything is gray and heavy and everywhere. That has been my last four years.

It is hard to sit back and think about that insidious cancer growing in Dad's lung, much like the fog, quiet and creeping until it is so far out in front of you that you cannot touch it. You must hope in the white-hot heat of chemotherapy to dissolve each and every cell into oblivion. And even then, it comes back.

Thicker, grayer, heavier.

Dad has discussed with us that he knows he will have to continue to do the chemotherapy for as long as he can tolerate and for as long as the current cocktail is working. He still has numerous (last check in January revealed at least eight) lesions on his liver, and thankfully, his latest PET scans haven't revealed any more. Cancer is smart: mutating with each new chemotherapy and becoming an elusive assassin with every treatment so that it cannot be eradicated, which means this current dosage won't be the last. If you want to get technical, Dad is considered to be getting palliative care, knowing full and well that there is no chance for a cure, only a mixture of medicine meant to keep the cancer at bay.

This is the fog that will never lift.

Proud Mary

I have resumed my daughter duties of being the queen of cinnamon rolls. The only negative to all of it, is my pursuit of perfectly coiled rolls with just the perfect amount of butter, cinnamon, and sugar, each delicately placed in the pan to rise. It just so happens that when you use too much butter, you wind up with a cascade of cholesterol going over your counter top and you subsequently slam-dunk the entire ball of dough in the trashcan. Maybe my perfectionist tendencies have gone a tad bit over the top. Maybe.

But, I trudge on. Each roll of dough produces roughly 30 rolls, which, unfortunately, is a lot more than your daily recommended allowance. So I have a lot of rolls to give, and for good reason. This  
post discusses my need for making these rolls, and the reasons are piling up.

Dad got to take a two month break from chemotherapy when he was told that his tumor markers had gone down to nearly five, which is a normal base-line number for a smoker. The doctor said he could stop the treatments since his numbers had gone down so much, but Dad said "no." He wanted to do one more just to make sure. And he did.

Fast forward two months later...

Routine blood work revealed that his tumor markers had increased from 5 to 11. Okay, Not too bad. Just monitor and come back in a month.

One month later...

Routine blood work revealed his tumor markers have gone from 11 to 45. Okay. That's not good. Dad started back on chemotherapy on October 19th, slated to go every two weeks instead of every three.

Dad usually calls or texts to give an updated report, so this time, I responded with, "I guess I need to make some more cancer-killing cinnamon rolls." Dad told Mom, "Well, I figured out how to get some more of those cinnamon rolls." I can only imagine the sly grin that crept across his face.

Two weeks later...

Routine blood work revealed his tumor markers have gone from 45 to 107. Dammit. How will I have time to make all of the cinnamon rolls necessary for this one?

It's in these moments that I come to face the reality that nothing I can say or do or bake will help. I cannot kill this cancer. What a sobering thought. Stone-cold, bathroom-floor-when-you're-sick, polar plunge sobering.

But I keep on rolling out the dough anyway. The real thing here is that while I can't kill the cancer, I can comfort my dad. I can pray for my dad. I can see the happiness on his face when eats them, when he licks the icing from the pan, when he tells me that he likes more butter rather than sugar.

So now, it's my mission to comfort and console with these rolls. Who is unhappy when they're eating a cinnamon roll? Well, I'll tell ya who... no one! So who makes the cut to get the rolls? Anyone.

Rolling it Out

I have found a new love: cinnamon rolls. These are not your average convenience store honey buns. These are rolled out, gooey, buttery, sugary, sliced up jewels of ecstasy. Amid my struggle of losing weight from menopause, these rolls have proven to be my kryptonite, and I'm okay with that. A bigger thing is hidden inside of these baked goods; there's a connection that I don't want to lose.
Dad is still taking chemo every three weeks, and every day is surely a struggle for him. Yes, he is still working, giving his time, skills, and know-how to the fire department, and still putting on a brave face every time he goes out in public. The most often heard phrase from people who see him is, " but he doesn't look sick." Most patients taking chemo lose weight. It's the trade off for having all of your cells bombarded in a battle to kill the cancer before it can kill you.

But that's not how my dad rolls.

He swears that he is much bigger than this tiny cancer, and therefore, it cannot kill him. As brave and courageous as that is, it's simply not true. This type of cancer doesn't care how big you are, what kind of person you are, or whether or not you still have things to do with your life. And speaking of bigger... that would be dad's pants size. He hates it, but I would rather see him look healthy and be a little bigger than the alternative. Here's where the cinnamon rolls come in.

I brought a pan of about 15 cinnamon rolls to my parents' house, and within two days, they had disappeared. Dad was eating them for every meal. Breakfast. Lunch. Dinner. Snack. Boredom. Just because.
Discovering how much he loves these cinnamon rolls lead me to the false conclusion that if I could keep him nourished with these rolls of yeast, butter, and love, that that would keep him sustained and living. Even if for only a little while longer. Even if I have to bake cinnamon rolls every weekend to keep his supply stocked, this I will do.

Out, Damn Spot

          Oh, Lady Macbeth, how true your words are. Whether it's the wine stain in the carpet or the tumors invading my dad's body, they just don't seem to go away. Unfortunately, this is a sad version of non-fiction that not even Shakespeare can rival: this is a tragedy of epic proportions. Despite the advances that modern medicine has made, this is the little cancer that could, and it's determined to kill him. On an even more disturbing level is my break up with reality. I've been swimming in disillusionment for the last year and a half. Wading in circles, not drowning, but never making it past the first buoy.
          I sat by the fireplace last night and just listened to the crackle. Listened to the flame eat away at the wood. It resembles the slight sizzle I hear as I inhale my cigarette, and I imagine it's doing the same to my lungs. I imagine it's what it's done to my dad.
          In this thought, a strange realization takes place, and it's what scares me the most about my habit. For years, I have marveled at how can everyone else not be ready to die and see His face in the same way that I am. There is a quiet solace and contentment that I get imagining flying through the air to meet my Creator and leaving behind all worry and anxiety. Sooner, rather than later. I am envious of my dad that he will experience this peace before me. It is this thought and envy that carries me through any attempt to quit, even when I had my first taste of anger at the cancer. I was mad at the cigarette in my mouth and the other nine still in the pack. I proceeded to take each one out and break it in half, determined that I was now, indeed, fed up.
          Each one had a letter: L-E-R-O-Y-A-N-N-A. I made it about three hours before my longing caught up with me.