March 22, 2020. It’s not the date that my father officially took his last breath. It is, however, the day that Jim Martin left this world. It has been exactly two years and I remember these things so vividly.

We all knew it would be over soon. He was so exhausted. After months of straining to speak, weeks of vomiting blood into plastic bags and days of being too weak to walk to the bathroom, he was finally giving in.

My sister, Marie, moved Heaven and Earth to make sure a Priest from a local Catholic church came to hear his final confession. COVID had shut down the world (to the surprise of those of us too wrapped up in caring for a dying father/husband to notice the budding pandemic) and the Catholic church forbade it’s leaders to put themselves at risk. But God – and Marie – provided. Our Father was at peace, spiritually.

Physically, he was still being tortured. The pain was masked with regular doses of morphine provided by the angels at the VA and hospice. I had the responsibility and privilege of keeping up with his medications and making sure that he was as comfortable as he could possibly be.

March 22, 2020 was the day that my father’s lungs began to fill up with fluid. His vomiting, which we had grown accustomed to, was different. He sounded like he was drowning. A sound that none of us will ever forget. This was the sound of dying. A horrible, painful, torturous death. A death I wouldn’t wish on anyone.

So I did the only thing I could do – I wept. And because my Daddy hated to see me cry, he did the only thing he could do – he tried to comfort me. That evening, he told my brother Paul and me to bring him to the table, he wanted to eat dinner. He told my mom to make him Ravioli. [Mind you, it had been at least a month since my father had eaten solid food. There was very little in the house.] She found some cheap frozen ravioli and boiled it while Paul and I maneuvered our weak, frail father to the table. He couldn’t sit on his own, so we held him up in the chair. I wept and he told me, “don’t cry – look! I’m sitting at the table! This is normal!” We Facetimed Maddy. He told her he loved her. He ate 3 small ravioli with butter, since there was no sauce in the house. Then, in true Jim-Martin-fashion, he announced,

“this tastes like shit.”

He wanted to get back into his beloved chair. This old, broken, nasty recliner. He sat down and called Paul over. He said “tell Doodles to move everything to the left.”

Doodles, being the cat that everyone hated.

And that was when I knew my father was never coming back.

We put classic country music on the TV. His eyes lit up when George Jones began to sing. He was still in there, somewhere.

The ravioli were coming back up. The vomiting was more painful than usual. His lungs were filling. He couldn’t breathe.

I called the hospice nurse and said she needed to come, immediately. I think she did. Some memories are a little hazy. What I do remember is pleading with this poor, saintly woman. I remember yelling at her. I was so angry. I told her that he is drowning. But he cannot drown. My dad is an excellent swimmer. He cannot drown to death. She cried. This woman, whose job it is to comfort the dying and their grieving families, joined us in our sorrow.

Somehow, she convinced my father that he needed to trade his recliner for the hospital bed that he had been avoiding for months.

Later, Paul would point out to us that, in order for us to get the hospital bed into the living room, we had to move everything to the left. My dad may have been a little confused about the cat’s role in the reorganization – but he still had a plan.

The bed was moved and he was transported to it. This is when we began the transition into “active Death.” This is when we started the liquid morphine, every two hours. This is when we had to officially let our father go.

After getting into the bed and taking his first dose of liquid morphine, my father hit my mother’s arm and whisper-yelled, “GET MEGAN!!!”

I moved into his field of vision. And in the late evening of March 22nd 2020, my Father said his last words. He said,

“Meg, it’s better now. “

And he went to sleep.

Paul had the foresight – knowingly or not – to suggest that we all take turns. Every 2 hours, an alarm would go off and a different child would give him his dose of morphine. While his intention may have been to give me a “break,” he actually gave me so much more. He freed me from the burden (while unrealistic) of being the one to administer the final dose of morphine that would take my father. None of us has to live with that burden, thanks to Paul.

My mother didn’t go to sleep that night. She held his hand and sat next to him. She stayed awake the entire next day, too. Just watching him breathe and holding his left hand. Her favorite cat, Gertie, also didn’t leave his resting body. She laid in his lap and slept with him. His 5 children, 4 of his grandchildren and his great-grandson all took turns holding his right hand. Laying by his side. Saying our final goodbyes.

My brother Ricky heard our Father take his final breath somewhere around 2am on March 24th. But I believe that my Daddy left the world on March 22nd. The most unimaginably painful day of my life. A day I will never forget. The bittersweet day where my world was completely shattered – but where my strong, brave father found comfort and peace.

Where he could finally say “it’s better now.”

And while, here on Earth, NOTHING is better now, I do take comfort in those words. I take comfort in knowing that his pain is gone. His suffering is over.

I just can’t wait to see him again. I miss my father so. damn. much.

It has been six months [and one day] since we lost my Father. Six excruciating, long months of the insanity of 2020. Six months. Half a year. And we still aren’t able to have a proper funeral for him. No Taps. No Marines. No acknowledgement of his service to this country. No shared grief or celebration of life with family and friends. No closure.

Why? My answer is going to piss a lot of people off. That’s why I don’t publicly talk about it. Because I don’t want to start arguments. And, quite frankly, I don’t want to hear the other side of the argument from people I care about and have formerly respected. I do recognize the hypocrisy within myself in regard to this, but it is just too personal for me.

My daddy took his last breath somewhere around 2am on March 24th while I slept next to his hospital bed in his home. It was snowing pretty hard and it took the funeral home until around 6am to come get his body. I laid on his chest. When they arrived, I broke. I held onto his lifeless body and sobbed. I don’t know how much longer I wanted to hug a dead body, but I do know I did not want them to take him away. They advised that I go in another room when they did. At first, I said I wanted to stay. But I complied.

Only my mother and one other person were allowed to attend the meeting at the funeral home at 10am, which perplexed me. New York had already started shutting everything down due to the outbreak of COVID in the city. The thing was, although I was acutely aware of the severity of the pandemic, I had been consumed by caring for my Father for the entire month of March. I recall my brother being worried. I know we talked about schools closing. I knew our restaurant was closed. I knew what was going on but I don’t think it was real for me at that point. The only thing that was real was that my Father was gone and it was time to have a funeral and they weren’t letting us and that felt wrong.

My Mom, siblings, nieces, nephews and my Father’s cousin and his partner were able to go to the cemetery. Four cars, only. We were able to walk to the plot where his casket lay. We were given 10 minutes, then we were sent back to our vehicles. I watched from the car as they lowered my Father into the ground at Saratoga National Cemetery. It wasn’t right. Nothing was right. The worst, though, was when they flippantly handed my mother the folded Flag through the back window. In hindsight, I understand it. Everyone else understood the gravity of the pandemic. We didn’t have the capacity yet.

After days of going through everything he owned and cleaning out my parents’ home, we said goodbye to my siblings, nieces and nephews. We said we will see one another in a few months, when we return to have a proper funeral. It will be nice to come back in the summer.

My brother, mother and I headed back down South, where many places had shut down to slow the spread of the virus. While many people were fearful of the economic impact of quarantine (and a National TP shortage), that time was marked by funny memes, some guy with mullet and tigers and self-reflection. With Matt home, I had the space and support to grieve. It seemed that society was reflecting on what was important – health, family, relationships. It felt like once this was over, we would all be better, kinder people who valued one another. As more information came out, it seemed to me (and many others) that if we could endure this quarantine for 5 or 6 weeks, we could return to a sense of normalcy.

But after about 2 weeks, people were over it. In states (like mine) where restrictions were relatively loose, people were back to Target, Lowe’s, Home Depot, Walmart. The weather was getting warmer, so people were getting together in groups. Cases were rising. Hospitals overflowing – “war zones,” a Nurse friend described to me. But the most dangerous thing, in my opinion, was that people who were not personally impacted by the virus were getting bored. And boredom leads to social media scrolling. And YouTube watching. The combination of wanting to escape quarantine and fear (economic or health-related) generated a lot of…let’s call them “alternative facts.” Misinformation. Conspiracy Theories. Contradictory messaging coming from every which-way. And once WE (I am CERTAINLY not immune to this!) find information that supports what we believe or want to believe, we RUN WITH IT. We dig deeper. And the more we dig, the more we find. Before I knew it, we went from “when this is over, we will all be better for it!” to protesting quarantine with AK-47s and signs that read “I want a haircut.”

Now, listen closely. This is OUR experience. I do realize that SOME businesses were not in the exact same boat for one reason or another, but I truly believe that most SMALL businesses would agree with me on what I am about to say. If you do not, yourself, own a small business but felt compelled to “stand up for” small businesses by pressuring state governments to re-open, I REALLY want you to hear this.

During quarantine, financial relief efforts for small businesses (and laid-off workers) were implemented. The first round of PPP loans may have been a joke, going to bigger businesses and publicly traded companies. But there were other waves. There were other loans and grants. Eventually, they even amended some of the PPP guidelines to allow for businesses to not only pay their employees, but also their rent. Employees of small businesses were able to receive unemployment – which was generally MORE than they had ever made. It was scary. Boarding up doors and windows, losing inventory – these are terrifying and heartbreaking things. But, while the country/state was shut down, there was still hope that, when this was over, we could get back up. We may not see profit for some time, but we will open our doors again.

Then, at least in North Carolina, a bunch of white people stormed the government buildings and had temper tantrums, demanding that we open back up. Some were honest enough to reveal their motivation (ie haircuts.) Some, I would assume, were part of those small businesses who did not/had not yet received federal assistance. Most (also an assumption, I certainly wasn’t there to interview them) were just over it. They had read enough on social media to convince them that small businesses were in trouble and that the virus was less of a threat than it really was. So they demanded their State open. You know, for the sake of the businesses. So, Phase 1 commenced. I can’t even remember what opened at that point, but I do remember the emphasis on mask wearing and social distancing – and the promise that in __ weeks (can’t remember), if numbers hadn’t spiked, we would move on to Phase 2, which our restaurant would be a part of.

What offended me most about NC Governor Cooper’s press conference about moving to Phase 2 was that he bothered to show the data. Had he just said “We decided slowing the spread of the virus is not the most important thing at this time. We have decided that money and the happiness and comfort of the angry white people should take precedence at this time.” I would’ve said “sounds about right.” I could accept that, because I knew it to be true. But that’s not what he said. He stood up there, showing us data, a visual representation of the impact of phase 1. HE HAD THE NERVE TO SHOW US the EVIDENCE of a continued rise in cases of COVID in the State of North Carolina. When questioned about why we were moving to Phase 2, since we had not successfully controlled the spread, he walked away from the podium. Yes, he was allowing Dr. Cohen to speak, but without saying “Let me allow someone else to explain,” my jaw dropped. The explanation they came up with – and I can’t make this up – was that this huge spike was actually encouraging because now that we had seen our highest number of cases yet, the case numbers will start going down. Right.

Now, it was time to open businesses at 50% capacity. No more economic relief. No more unemployment for ourselves or our staff. 100% of the operating costs. 50% of the business. FOR. SIX. WEEKS. THIS was terrifying. Small businesses, especially restaurants, don’t run 50% margins. It’s not sustainable. It’s insane to think that would be helpful to the business. Not to mention that some of us were actually worried about our health and safety. So, my poor husband reluctantly had to ask his staff to come off of federal assistance – and not to make what they were making before – but maybe make 50% of what they were making before. And the sickest part? If a staff member said “I can’t come back, my child isn’t in school! I have to watch him/her!” or “I can’t come back, I have a compromised immune system!” or “I’m afraid to come back,” he was now required to report that and they would lose their unemployment. Since we were open, they had to come back or they were screwed.

They worked so hard to get the restaurant ready to reopen. The government did give them a 2 day heads-up, though. Ample time to order all of the new PPE, restock all of the food and beverages and completely change the layout of the restaurant to ensure social distancing. Staff were to wear masks and gloves. I won’t even go into the hilarious recommendations to stay 6 feet away from customers while delivering their food to them or, when possible, have employees work remotely. Yes, these were the recommendations specifically for restaurants. I also won’t tell you how much it cost to reopen. But we were supposed to be thankful that we were allowed to. At the time, 50% capacity for 6 weeks, risking health and safety while hemorrhaging money didn’t seem like a blessing – it felt more like a death sentence. But here I am, in month 4 of Phase 2 (version 3) and the bars around us are still not open. So, in hindsight, I suppose we were fortunate.

Young people. Oh, boy. The stories Matt would tell me about the young people who were so desperate to party. It was good, they were spending more money. Tipping more generously. But they were reckless. No masks. Blatant refusal to distance, despite being asked to repeatedly (because, of course, the business would be the ones fined for non-compliance with regulations). Carefree, wild and so dangerous.

SHOCKINGLY, cases continued to spike and then the Governor decided the data was important. So we remain in phase 2. Masks are now mandated, though. I am, for the first time in a few months, hopeful. Every reputable source I have read indicates that if all parties are wearing masks, it is unlikely that the virus will be spread. Not long after, my hope disintegrated because all sorts of people were refusing to wear them. Something about freedom. “My body, my choice.” (Yes, the slogan for women’s reproductive rights. Yes, the irony is lost on them.) They say it is government control. Some say they can’t breathe. Or they have asthma (which my daughter has and can breathe PERFECTLY fine in a mask AND if you actually had asthma you would be worried about getting COVID considering it effects your lungs. So I call BS on the asthma excuse.) Some have found publications stating that they don’t work. Some have even found some nonsense about masks being harmful. But the most common excuse is in regard to freedom.

THEIR freedom.

Their freedom, that MY dad fought to protect. Not MY freedom. Because I’m not free right now. Because of the refusal of so many to wear masks, I am not comfortable being in public. Not because I’m afraid of getting COVID. I could care less if I get it. I’d be fine. But my mom. My mom has MULTIPLE autoimmune disorders. She cannot get it. I will not lose another parent. I haven’t even properly buried the first one. So my brother and his family, my mother, my family – we’re not free. We can’t go out because of their “freedom.”

Right now, I have to choose between my daughter’s education and mental health and my mom’s physical health. Because Governor Cooper is up to his old tricks again where he disregards data based on the tantrums of white people and just randomly opens up schools. All the way open! No need for social distancing anymore! And SURE, parents send their kids to school with colds, strep, flu…but they will totally behave differently for this virus that they don’t even believe in. Right.

So, here I am. Six months later. Still unable to honor the life of my father. And I’m so angry about it.

But I will say that I am thankful that God took my Dad before he had to watch the country that he fought to protect turn into this.

I don’t want to watch it either, though. I am so ready for Jesus to come back. I am ready to see my Daddy again.

On my 13 hour drive from Charlotte to Albany, my dad called multiple times to check on my progress.  The calls got more frequent as it got closer to my arrival.  Finally, my mom was the one to call.  She said “your dad just wants me to let you know that he’s not feeling well.  He just wants to warn you.”

Did he think I was going to get there and try to throw a party?  Was he worried about having to entertain me?  Of course I knew he wasn’t feeling well, that was the reason I was coming.  What a strange thing to say.

I called Paul and Marie, my siblings who had visited him more recently.  I asked what they thought that was about.  Paul said I would probably be surprised when I saw him, he really has begun to look sick.  My dad was probably just trying to prepare me.

Turns out, no amount of warning could have prepared me.  When I walked in, there was a complete stranger in my father’s chair.

This stranger was hunched over.  The sharp edges of his bones were so dramatic, it was as if they could slice through his white shirt.  His skin was grey and ashy.  His face gaunt, thin.  His eyes bulging.  This shell of my daddy sat bent over in his chair with a plastic bag in his hands and whispered “hey Meg.”

I said I had a long ride and couldn’t wait to shower.   I ran into the bathroom, turned the shower on and threw up.  As silently as I could, I lost it.  But I was determined to be helpful.  I was there to support my parents.  To care for my father.  I was not there to be comforted or worried about.  My dad spent the last 35 years of his life worrying about me.  I was there to let him know that I will be okay.

I was going to be okay.

I am going to be okay.

What’s funny is that I never thought about my father’s death as something that would be gradual.  I guess I assumed that I’d receive a call saying “your father passed away in his sleep.”  You know what, that’s probably not true.  If I’m being completely honest with myself, I don’t think I actually believed that he would ever die.  At least, not in my lifetime.

So, things didn’t happen the way I anticipated.  After visiting for Christmas, my dad went right back to work.  But he wouldn’t answer my phone calls.  When I spoke to my mom, she would say “it was a good day” or “it wasn’t a great day.”  I knew he was sick when he wouldn’t answer Maddy’s calls, either.  He would text us, saying he was tired.  But it was becoming painful and exhausting for him to speak.  He SOUNDED sick, like he had a sore throat.  He said he was going to have the doctor check it out.

It was also increasingly difficult for him to eat.  It turned out that the tumors in his lymph nodes were pressing against his throat – so talking and eating would only get more difficult as the tumors continued to grow.

Not eating – and having cancer eating away at his body – also meant he was getting increasingly weak.  But his stubborn-nature didn’t take a hit.  Mental strength + Physical weakness = falling.  A lot.

My poor mother.  She was waking up to him falling.  Hard.  And he was not a small man.  But he refused to have an ambulance called, so they would sit on the floor for hours until someone could come help him up.  I kept asking her if she needed me to come to New York.  She would reply that she would tell me when she needed help, but she was okay, for now.

It was the second week in February when he lost his voice completely.  Oddly enough, once he could only whisper, he was more willing to talk on the phone.  One day, I missed his call and he left a voicemail.  He whispered “Hey, it’s me.  Could you tell?”  Then laughed and hung up.  Listening to it, it hit me.  I will never hear my father’s voice again.

I knew that was a reality, when he was gone.  But he was still here.  And I would never hear him say I love you.  Or ask Maddy “who loves ya?” I had heard his voice slowly slip away and it was now gone.  What a strange thing for cancer to steal.

The week he lost his voice for good, he had a Doctor’s appointment where they decided it was time for Hospice to take over.  He wanted to be at his home.  He was adamant that he didn’t want to go into a facility.  (THANK GOD he made that decision, because COVID was lurking around the corner.)  But that meant my mom had a heavy burden that I couldn’t let her carry alone.

So, I made some arrangements and drove to NY on March 8th.

Confession:

In my mind, chemo was the thing that makes people violently ill. It’s the thing that causes hair loss, dry mouth, suffering.

In my mind, cancer is just the thing that kills you.

Many of you are probably rolling your eyes, annoyed at my ignorance. But for those of you who have had the good fortune of not experiencing cancer first hand, let me tell you just how wrong I was.

November brought on an onslaught of new issues for my dad. UTIs, a cold/virus, loss of appetite, weakness. And most notably, PAIN.

Talking on the phone with him throughout the month, he had pretty high hopes that these infections and viruses would pass and that he would be feeling better at some point. But the pain, he couldn’t even describe. Not just the severity of it; He had trouble locating it. He would give up trying to explain it and would say, in summation, “I don’t know, Meg. I just hurt.”

Interestingly, my mother – you know, the one who has been predicting his death for the last 20 years – would tell me he was doing okay. He was still happy to go to work. He still enjoyed seeing friends. She had an uncharacteristically optimistic outlook on his infections and viruses, seemingly certain that once they passed, he would be fine.

My sister and her kids, who live just about an hour from him, were able to visit one weekend. My brother, in New Hampshire, spent another weekend there. They both let me know – he’s definitely declining. The good news, though, was that he was still himself; He had no shortage of insults, he continued to make everyone laugh.

Paul (NH brother) said our dad agreed to go to his house for Thanksgiving. He encouraged me to come up there for a few days, saying it would do dad some good to see me. And it would probably be good for me, too.

Because my husband is the best (and he knew that I would drive myself – and, in turn, him, CRAZY trying to decide what to do), he made the decision for me. I went to NY for two weeks.

My dad picked me up from the airport. He was shaking. He sounded sick. As usual, he asked if I was hungry and we stopped to grab gluten free pizza. He ordered nothing for himself because he had no appetite.

Here’s the thing – my dad always had an appetite. My whole life he battled what I would deem as an eating disorder. He loved eating. Popcorn every night – with a whole stick of butter. That was his favorite. My dad was always yo-yo dieting, as long as I can remember. When I was in college, he had that band surgery, where they basically put a rubber band around your stomach, shrinking the size of it. He lost 90 lbs almost immediately. Within the year, he had gained it back, and then some. I’d say, in my lifetime, he went back and forth from 250-330. The fact that he wasn’t eating was beyond concerning.

The reason for all of these things was because of the excruciating pain that he was constantly in. It was so hard to see. And, while he was going to tough it out, I couldn’t watch it. I urged him to go to the doctor. I said I didn’t think he should have to live like that.

When we went to the VA, my dad’s primary was quick to take his 2 high doses of Extended Release morphine to and ADD a lower dose every 4 hours for “breakthrough pain.” When I mentioned how I didn’t think he should be in this much pain, she explained to me that “cancer pain” is a whole different level of pain. The morphine will help.

And it did. After several days of getting the morphine in his system, my father had some relief. And now, he decided he was going to come to North Carolina for Christmas.

I didn’t believe he would make it – he couldn’t drive and he hadn’t been on a plane since Vietnam, but 2 times. But, in true Jim Martin fashion, he came. And he celebrated. We had a beautiful holiday and made even more memories. January 2nd, my parents headed back to NY so he could go back to work.

That was the beginning of the horrific end.

By the time my father was out of the hospital, I had been in New York for a few weeks and Matt and Maddy were ready for me to come home.  My dad asked the doctor if I could be included in doctor’s appointments virtually.  I would be able to take care of my family – and still be aware of everything going on with my father.

The first appointment was with his surgeon.  We all trust and respect this woman (who we will call Dr. L) and I praise GOD that we had this conversation with her, first.

Dr. L told us what I had already suspected; The margins revealed that the cancer metastasized.   It revealed that there was lymphatic invasion, meaning the cancer had spread to his lymph nodes.  She reiterated what she had explained back in November, with the initial diagnosis: that this specific type of cancer is very aggressive.  Since she was unable to remove everything, the likelihood of survival – with or without treatment – was not good.  She explained that there is no research that indicates patients with cholangiocarcinoma go into remission.  Dr. L was kind, but she was honest.  She said “This will be the thing that kills you.  You may choose to try treatment.  It may give you some extra time, but this type of cancer does not go away.”  She took my father’s phone and spoke directly to me.  She looked me in the eyes, and said

“I know you love your father and you want him to do anything he can to make him live longer.  But we know your father likes to live a certain way.  He wants to golf.  He doesn’t want to be sick.  So whatever he chooses, you will have to respect that.”

Not a problem.  I absolutely respect the choice not to do chemotherapy or radiation, ESPECIALLY when it won’t yield the results we want.  And I know my father wouldn’t want to be at the hospital 5 days a week, getting sick, missing out on golf tournaments and beach trips.  I want him to enjoy the time he has.

Dr. L gave us some pleasant news, too.  She explained that the tumor she removed was pressing against his spine, pinching some nerves.  She said that it explained a lot of the pain he was in previously.  Dr. L said (verbatim) “You will feel EXCELLENT.  Until you don’t feel excellent.  Then it will be quick.”

We loved Dr. L.  She was brilliant, compassionate and she understood who my dad was.  The thing is, when you get this kind of diagnosis, they set you up to meet all sorts of other doctors – a chemo-oncologist, radial-oncologist and a palliative care doctor.

Next up was the chemo-oncologist.  We will call him “Dr. Chemo.”

Dr. Chemo began our appointment by listing many, many varieties of chemotherapy drugs that we can try.  My mother, who (1) worked in hospitals for 30 years and (2) had already reviewed my father’s test results, protested.  She said “wait, he couldn’t take [chemodrug1] or [chemodrug3] because they can lead to liver failure and his liver is cirrhotic.”

Dr. Chemo said “oh. Let me bring up his chart.” Strike 1.  He forgot to look, I guess.

Dr. Chemo agreed with my mom.  He continued the list of more appropriate chemotherapies.  My dad stopped him.

“I’m sorry, Doc.  I have a certain way that I like to live,” he said, “I don’t want to be sick.  What would the ‘end goal’ of these drugs be?” (If you knew my dad, I hope you can hear him saying this – because I can still hear it.)

And here’s where Dr. Chemo REALLY pissed me off.  Dr Chemo said,

“well, the goal would be a cure.” Strike 2.

This is when I spoke up.  I’ve never been filled with rage quite like this, so my recollection of what I said may not be 100% accurate.  But it went something like,

“EXCUSE ME?  SEE, I’m under the impression that THERE IS NO CURE FOR CANCER.  Period.  But even if there were, Dr L. explained that there is no research indicating that ANY chemotherapy for cholangiocarcinoma has been effective in a major way.”

Dr. Chemo examined his chart more, then mumbled some words to himself, then pulled up some research.  He read it, then responded “yes, there have been some cases where chemotherapy and radiation have given patients up to two years longer than patients who did not receive treatment.”

My mom added “yes, but isn’t that when the cancer did not spread?”  Dr. Chemo said “yes.”  My mother replied, “but his lab results show lymphatic invasion.”

Dr. Chemo looked at his chart again and mumbled.  He said “yes.  There is little research because this form of cancer is rare.  It is possible that we will see positive results with a combination of chemotherapy and radiation.”

My dad spoke up.  He said “Doc, a lot of this is over my head.  My main concern is that I don’t want to be too sick to do what I want to do.”

Dr. Chemo didn’t care what my dad wanted to do.  Dr. Chemo said “well, some people don’t get sick with chemotherapy!  There are a few options that are–” STRIKE 3.

This is when I lost my cool.  Because he wasn’t listening.  He didn’t care AT ALL about my father.  He didn’t care what my father wanted.  I don’t know what his motives were, in hindsight.  At the time, I started yelling.  I was screaming about how clearly big pharma was padding his pockets and he finds joy in giving false hope and bankrupting families based on this promise of a cure…

And that’s when my dad said “Meg, I gotta call you back.”

He did call me back when they left the VA.  He told me he was going to try the chemo pill.  He said “if it makes me sick, I’ll just stop taking it.”  He said “I just hate the idea of missing Maddy and Erin growing up.  It’s worth a shot.”

I can respect that.  I admire his will to fight, to live.  Know who I don’t admire?  Liars.  Know who I don’t respect?  Dr. Chemo.  Matt thinks my anger is misdirected.  I disagree.  I think there’s a special place in hell for Dr. Chemo and his friends.  But that’s beside the point.

The point is, I never got invited to another facetime appointment with Dr. Chemo.

 

I love rollercoasters.  I’m smiling right now, just thinking about that feeling at the very top – right before you become weightless.  Then, once you make it to the bottom, the ride is just beginning!  For the next 60-or-so seconds, you are up and down, twisting and turning in this delightful mix of fear and elation.

I often refer to my emotions as a rollercoaster.  Bipolar disorder is characterized by extreme “highs” (manic/hypomanic episodes) and extreme “lows” (depressive episodes.)  But, the thing is, it’s not like a rollercoaster at all.  There’s nothing fun about an emotional rollercoaster.  Nobody straps you in or checks your safety belt.  You can’t even enjoy the ride up because you know, once you get to the top, you’re all going down.  And it’s not going to be a pleasant fall.  No butterflies in your stomach.  Just disappointment.  Fear.  Horror.

And that sums up January 9, 2019: Surgery Day.

I traveled to NY just after Christmas to help as my dad prepared for this big surgery.  He gave me a list of 80-something people that needed to be updated as he went in and throughout the procedure – and, of course, after.  The man had quite a few friends.

Matt and Maddy drove up from NC to see him before he went under.  My brother Mike, his wife and daughter were staying just down the road.  My half sister, Marie and half-brothers Ricky and Paul also came into town.  And, of course, my mother was by his side. He was surrounded by the people who loved him most.  We all knew the reality of the situation.  After we said goodbye to him, we sat in the waiting room in silence.

The expectation was that it would be a long, complicated surgery.  They would update my mother occasionally throughout.

The first update came right before noon – just a couple hours into surgery.  As soon as the phone rang, I felt that old familiar feeling in my chest – a panic attack in the making.  This was the moment where everything would come crashing down.

The surgeon said they finished surgery.  He did well.  They will close him up and meet with us shortly. (I seemed to have forgotten, it was my dad they were operating on).

My mother, brothers and sister celebrated.  I’m sure I celebrated, too.  I know I was happy.  But not the right kind of happy.  Happy like I’m at the top of the rollercoaster, but I’m not buckled.

Admittedly, I’m a pessimist.  I am a worrier.  I have always felt more comfortable in a state of melancholy – never allowing myself to get too happy.  So, my uneasy feeling could certainly have been me, being me.  Except that it wasn’t.  This time, my uneasy feeling was justified.

We met with the surgeon.  She explained that the tumor had doubled in size since the last scan.  His liver was much more cirrhotic than any of the tests indicated (Oddly enough, the guy maintained NORMAL liver levels the entire time).  She said that she got a good deal of the tumor out, but it was hard to tell where the tumor ended and the cirrhotic liver began.  My mom asked “so what’s next?”  She said “He just had a major surgery.  We will get the margins back, let his body heal and schedule a follow-up in 6 weeks.”  She also told us he was awake already, and we could see him in Recovery in a few hours.

No one else sensed the impending doom that I did.  My mom wanted to update “the list” and tell everyone surgery went well.  It was “good news.”  He survived this impossible surgery.  “He’s a bull.”  “He’s got snake blood.”  Did no one else hear that she couldn’t get it all?!  Or did everyone else think they had buckled their freaking seatbelts before they got on this ride?!  Here’s my family, at the top of this rollercoaster and I’m the only one who noticed that we are not safe. And the ride is far from over.