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The diagnosis.... part 2

9/13/2023

6 Comments

 
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When I arrived at Andy's hospital room the next morning, he was sitting nervously on the edge of the bed. Despite it being before visiting hours, his nurses snuck me up stairs in order to see him off before his early surgery. 
His eyes lit up when he saw me enter the doorway, but quickly turned nervous, remembering again where he was. 
"I'm scared," he said, looking as if he was going to cry. 
"No, no," I scurried over to reassure him. "The doctor said yesterday it is a simple surgery and after you'll have about only four weeks of recovery, but that's ok. You can sit and relax and just hangout with the girls," I said, joining him on the edge of the bed. I instantly though of him cuddled up on the couch with our two Australian Silky Terriers glued to his side, one big cuddly mess of blankets, pillows and fur.
​
If I took a step back and really thought about the situation, I was still in a bit of disbelief that we had ended up here. Just a week earlier, we were strolling through the cobbled streets of Vaison, slowly taking in everything as if trying not to forget exactly how it looked, felt, and even smelt. We lingered over every shop, every sign post, every Roman ruin site, making a mental map. It was as if we had left all of our care-free happiness in those streets.
At one point during our last walk in Vaison, we followed the sound of beautiful music, down a lamp lit street until we found Ben and Tess, a musical duo from the region. They were set up in front of the shuttered post office, with a group of onlookers circled around them gently swaying to the rhythm. We mixed in with the group and stood listening for about an hour, the cicadas singing along in the background. It was a snapshot of life we specifically wanted to remember; our last few hours in our new home. The warm breeze providing some relief to the sticky hot night, the feeling of the onlookers intently watching and listening along. It was the perfect scene for the perfect final night.
As we walked back to our house to finish packing, a tear slid from Andy's eye.
"I just want to give this town a big hug sometimes," he said, a little misty eyed. 
I smiled and nodded, a little choked up for words. I wanted that feeling again, the happiness and security we felt that night.

While I was in disbelief over the situation, I didn't feel scared. I am someone who takes a person at their word. If someone tells me something, I tend to trust them, unless given a reason not to. So, when the doctor said, in a very straightforward and confident tone, "I do a few of these surgeries every day. They are simple and rarely do things go wrong." I felt at ease. It was just one more step to get Andy back to normal, nothing tragic or life threatening. We were going through the motions of a routine situation.
When reflecting on this situation with Andy, though, he remembers having a specific conversation with the doctor when it was just the two of them.
"I'm not sure what I'm going to find when I get in there," the doctor said, pointing to his stomach. 
"Wouldn't you find the usual things?" Andy asked, a bit confused.
"You've had three kidney transplants, Andy. Things have been moved around to accommodate for that. When the last surgeon was in there, he wasn't thinking about the next person doing an operation on another section of your abdomen."
So there had  been some worry, I just wasn't told about it until the subject was brought up again in order to write the blog.  
In this moment, though, I looked at this hospital stay as a means to an end with no danger in-between. Again, I hadn't really had any hospitals or surgery up until this point.
Two nurses appeared in the doorway and one tapped lightly, trying not to interrupt the moment between Andy and I.
"It's time," she said, opening up the door and revealing a transfer hospital bed. Andy squeezed my hand and turned to the nurses. "Is she able to walk with me until we get there?" 
The nurse nodded. 
He crawled into the bed and as we began to wheel away down the hall, I began to notice all of the signs that I had missed when I first walked through the hospital wing.
"Why are we in the throat and lung wing?" I asked the nurse, a little concerned.
The last thing I wanted was for them to have misplaced him and have him come back with the wrong surgery. 
"We're understaffed," she started.
Great! Just what someone sending their loved one into surgery wants to hear! 
"The floor he should be on is closed since there isn't enough staff to fill it. So those patients are getting placed in other sections around the hospital," she explained. She noticed my expression and added, "don't worry, all of his specialists come to this floor to see him," before wheeling the bed out of the elevator and into the hall.

We stood outside of the doors for the operating room and Andy squeezed my hand again. 
"I'll see you in a few hours, I love you," I reassured.
"I love you too," he said as he was wheeled away. 

The five hour surgery ended up taking eleven hours and no one could explain why.  I sat, nervously reading my book, only half paying attention to the words on the page. Every so often, I'd hear a noise pass by and look up, hoping to see his bed be wheeled in. I waited and waited. The afternoon sun started to dip behind the clouds and turn to a grayish pink night sky.
A nurse would pop by his room from time-to-time and I would ask if there had been any updates. 
"Not that I know of," they confirmed, "he should be up shortly." 
The fact that the staff didn't know what was going on only added to my worry.
Did something go wrong? Was this more of a serious surgery than the doctor had led on?  My mind had raced wildly for hours.
When they finally wheeled him back up at 11 PM, I was tired and mentally drained.
With the surgery taking over double the time they suggested, the lack of information left me in a state of panic for the last six hours and my nerves were shot.

"How did it go," I asked, quickly moving to the edge of my seat as they locked his bed into place.
"It went incredible, the doctor will be up soon to talk with you about it, but it couldn't have gone any better," she confirmed, fluffing his pillow.
I sucked in a deep breath and held it for a moment, looking at Andy who was still coming out of his drugged sleep. 
The doctor appeared in the door way, accompanied by his team of surgeons. He walked over to Andy's bedside, placing a hand on his shoulder.
"How are we feeling Andrew?" he asked, a little louder than normal, adjusting to Andy's level of consciousness. 
Andy stirred and opened his eyes. 
"How did it go?" He asked, turning his head from side to side in order to take in all of the people who filled the room.
"Very well, we removed the mass and now we must wait until the lab results come back telling us what it is. Your job is to just rest and heal," he said, taking a marker and making some notes on the whiteboard.
"We will swing by again tomorrow morning to check in on you," he added, closing the marker and heading towards the door. 
"Do you have any questions?" He looked over at me.
"I guess just what are the next steps?" I said, feeling a little glazed over from the day.
"After we get the results we should be able to make a plan to move forward. It's late,  maybe you should head home and get some rest," he urged. "We can talk more tomorrow." He softly waved and then closed the door behind him and the crew, leaving us alone in the room filled with silence. 
I carefully set my book down on my seat and carefully moved to the edge of Andy's bed, not wanting to disturb him. 
"How y'a feeling?" I asked, rubbing his leg. He groggily opened his eyes and squinted at me.
"Tired," he answered, then feel back asleep. 
I quietly slid off of the bed and collected my things, not wanting to disturb his rest.
Before heading home, I decided to hit up the hospital's convenient store, knowing I should try to eat something before going to sleep.  
In stressful times, real food is the last thing I want to eat. Usually, I force myself to pick the healthier option; maybe a granola bar or banana. This time, however, I let myself pick anything I wanted.
I've had a rough day, I've earned a binge fest of junk to drown my frazzled feelings in.
Loading my bag up with sour patch kids (a weakness), strawberry pop tarts (a bit of nostalgia) and potato skins chips (something savory to justify eating junk for dinner). As I checked out on the computer, a night shift nurse in blue scrubs came up behind me with his can of Starbucks Double Shot. He peeked into my bag.
"That kind of night?" he asked with a joking smile.
"The kind of DAY I've had warrants the cookies and creme pint of ice cream and the oatmeal cream pie too, but no one needs THAT much garbage," I smiled back, taking my receipt. "Have a good night," I said over my shoulder and headed to my car.
The crisp air hit me as soon as I opened the doors; the seasons were clicking from summer to fall. I stood outside for a moment, allowing the chilly breeze to wake me up for the drive home. 
Midnight, I thought looking at my phone. Where did the day go? Thankfully, we only lived fifteen minutes away.

The next day, I let Andy's dad go and visit for the first few hours. My body ached from sitting in a stiff hospital chair for hours the day before, and I needed some time alone in order to collect my thoughts. Sitting in bed, sipping my coffee, I thought about all of the things I needed to do that day.
His sister was coming in to town and I had to collect her from the airport, before bringing her to the hospital to see her brother. I also needed to write up more lesson plans for whoever was subbing for me the next few days. With his sister and dad in town, though, I felt more comfortable leaving him at home to recover and going back to work. Already out three days from work, I was craving some kind of normalcy or routine; something else to fill my mind and distract me from the current reality.
Even before all of this happen, life hadn't felt 100% settled. I was still going through the motions of acclimating to American culture again, which sounds so simple, until you do it. 
My first trip to the grocery store left me standing in the baking aisle, my eyes frantically scanning the shelves for the milk (which is usually not refrigerated in France). It took me a minute to remember that here, the milk is kept cold. I blotted away a falling tear as I pushed my cart towards the cold aisle, deep down wondering, why I was literally crying over milk. 

I took another sip of coffee as a new thought popped into my head; food. What was I going to feed Andy's family? Usually, I enjoy cooking large, family-style meals, but the thought of it just seemed daunting with everything going on. I shut my laptop, hoping to stuff down the feelings that were slowly creeping in; a sense of overwhelming stress. 

Back at the hospital, nothing had really changed. Andy was resting, but the nurses urged us to begin walking the halls when he felt up for it. 
"The sooner he walks on his own, the sooner he gets to leave," one said. 
He seemed groggy, as if he was still getting over the drugs used to put him under. 
"Do you remember me being here when you arrived back in your room last night," I asked.
He shook his head. 
"Do you remember on the phone this morning who I told you was coming to visit you?"
"No," he said, again shaking his head, his eyes lightly fluttering with sleep. Just then his sister walked through the door. His eyes opened back up at the sound of someone new entering.
"I can't believe you're here," he said when he realized who it was. His eyes grew wider than I'd seen them in days. "You didn't have to come all this way, it's nothing serious," he assured her.
I picked up my purse.
"I'm going to let you guys catch up, it's been a while since you've had time together," I said, kissing him on his head. 
"I'll be back in a few hours. Check your phone, I'll send your some dinner options to pick from and we can order take out," I said, slowly clicking the door shut.

The next morning, I made sure to be there just as visitors were being admitted. I wanted to spend some alone time with him before his dad and sister stopped by to visit.
When I opened the door, he was sitting scrolling on his phone. Up unto that point, I hadn't seen him have the ability to get on his phone and answer emails or texts.
Today he seemed more alert and overall, more with it. 

"I saw you messaged some people about work," he said, as I claimed the seat beside him.
Andy had given me his phone before surgery and a few work messages had come in, frantically trying to set up a call or meeting to discuss upcoming projects. I didn't want to just let them think he was ignoring them or irresponsible. Both big projects, he had new clients on them, so it was important to make a good impression and come off as professional as possible.
I'd simply written that Andy was in an unexpected surgery and would reply when he was able to. Everyone wrote back immediately, sending well wishes and a speedy recovery, also adding that he can pick things back up where they left off when feeling up for it in a few days. 

I popped my plant on the window sill behind me, next to the plant his sister had brought from Chicago. 
"I'm starting to have a real green house here!" he said, admiring the plants.
"You had mentioned wanting lots of flowers and plants to liven the place up a bit."
"When did I say that?" He asked.
"The other day, don't you remember?" 
"No, man I must have really been out of it," he said, shaking his head.  
His phone rang and he answered. It was his kidney doctor.
"I'm feeling ok, but I have Rachel here too, can I put you on speaker phone. Ok, one minute," he said, flipping the phone over and hitting the speaker button. 
"Andy if you authorize it, is it ok for me to tell Rachel medical things as well?"
"Yes, it is completely fine," he confirmed. 
"Ok, so, I'm calling because we have to figure out the next steps." 
I cocked my head to the side and squinted my eyes.
What was she talking about? We can't make any plans until we got the results back about what exactly was removed.
Andy shrugged at my reaction, trying to follow along.
"I'm sorry," I finally cut in, "next steps for what?"
"I think the next steps are finding a good oncologist, I can run through a list that I like if you want to do that now," she continued.
I felt like I had walked into the room halfway through the conversation. What the hell was an oncologist? 
"Wait, wait, wait, I'm not following. What kind of doctor is an oncologist?" I asked.
"Didn't Andy tell you?" She replied, a bit confused. I could hear the hesitation in her voice.
"Tell her what?" Andy finally jumped in.
"Andy, do you remember talking with me yesterday?" The doctor asked, trying to gain some clarity.
"No, when did we talk?"
"I called about noon yesterday, I asked i you felt ok enough to talk and you had said yes."
​"I don't remember talking to you at all," he confirmed. 
There was a long pause and it felt as though the room was filling up with water. Panic, suspense, impatience and fear all washed over me at the same time. I finally came to, realizing I hadn't taken a breath, waiting for her response. 
"Doctor, are you still there?" Andy asked, trying to urge her to continue.
"Yes, I'm sorry, Andy. What they found was stage 3 colon cancer," she said, with reluctancy to finish the statement. 
We both looked at each other. 
"Are you sure they didn't mix up someone else's results?" I said in complete disbelief. 
"I know this is a lot for you right now. Everything is happening so fast. The doctor said he removed everything, but three of the lymph notes were affected, which is why you just got pushed over to the stage three marker," she said, pausing for us to take it all in. 
I looked again at Andy. 
"You don't remember her telling you that you have cancer?" I said in disbelief. I started to get choked up at saying it. The phrase, "you have cancer" isn't something I ever thought I'd be saying. "You need a kidney transplant," yes, I had mentally prepared myself for those words, but not these. 
I was raised in the 90's where, when someone had cancer, you weren't given options. You were given how many months they were going to live... your option was what you did with that time. 
Growing up, I've only had two family members who have died from cancer, my aunt and my grandmother. Both, however, had smoked an ungodly amount of cigarettes, so it only made sense in my young mind that it was how their stories were eventually going to end. 

"I'm going to give you both some time to process things. I can call back tomorrow and we can discuss the next steps together," she said, urging us to get some rest and try to stay calm.

The room filled with a heavy-sitting silence. It was a traumatic way to find out such life changing news. It was as if the diagnosis had been announced. The hard part of putting the news out there into the world had been over, but, in Andy's state, it fell on completely deaf ears.
I slumped back into the chair next to his bed, unable to hold myself up.
I started replaying yesterday's events. 
When I arrived with his sister, he had already been told he had cancer. It was like a secret hanging in the room, just waiting to be exposed, everyone who entered blissfully unaware of the circumstances. 
"I swear I don't remember talking to her," Andy urged. 
I didn't fault him, I just would have rather the news had been delivered in a different way. If I'm being honest, though, is there a "different way" or a "better way" to deliver that kind of news? If we had been sat down by the medical team and knew that we were discussing this before hand, I could have readied my nerves for what may come. I could have mentally prepared myself for the possibility of something off kilter instead of just being thrown into the deep end, having to ask questions in order to fish myself out.

A doctor tapped on his ajar door and he opened it, allowing himself and his team to enter. 
"Hello Andy, how are we feeling today?" 
We both just stood there, blankly staring at the group. 
I wiped the tears away from my eyes in order to look a little more composed. 
Words caught in my throat, but luckily Andy answered the five sets of eyes starting back at us.
"We just found out what the mass was, so we're kind of taking things in at the moment," he informed. 
"Our next steps are getting you out of the hospital and recovered before we even begin to worry about what was found. Let's get you walking and using the bathroom on your own so we can get you home and comfortable," the doctor suggested. 
"For now, we have some tests we are going to run just to check everything else out. It's all pretty standard stuff. It will take a few hours, though, so we're going to have to ask that visitors come back a little later on," his eyes switching over to focus on me. 
I blew my nose and nodded, collecting my things. 
"I need to go home and talk to everyone anyway. They would want to know what is going on," I said, giving him a kiss and heading out the door. 
"Text me when you're back in your room," I said, pushing past the doctors and fellows.
As I walked through the hallways to the elevator I opened my phone and googled, "how many stages does cancer have?" 
The first article confirmed there were only four stages and Andy being at stage three meant that he was on the back end of the scale. I quickly put my phone away. The last thing I wanted to do was do a deep dive into colon cancer. If I started, I don't think I'd ever get myself out of that dark, depressing rabbit hole. 


6 Comments
Harold Mayo
9/17/2023 07:58:57 am

I am curious about how different the medical system is compared to America, especially the care in hospitals. I am on the journey of getting a kidney transplant…it seems like a convoluted process, with testing period being over a 6 month window, then restarting the next year. I can’t help but wonder if it is just a money grab by the hospital. I have been a T2D for 30 years, with some complications; the transplant center has warned me that I may not qualify for a transplant in the end due to hardening of the arteries. Would hospitals in Europe be more succinct?
I have a friend who looked into a bone marrow transplant; in America, even with insurance, it would cost $400k. She talked to the program’s in other countries: Italy, she needed to live there for a year, but the cost would only be $30k. Israel was free if she became a citizen. Russia was $10k with a residency requirement. And Germany was like Italy. The darnedest thing is the success rate in those countries is higher than in the USA. She ended up choosing another treatment that allowed her to finish college. Are kidney transplants better over in Europe?

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Rachel
9/18/2023 09:05:24 am

Hi Harold,
From our experience in France, they would be less helpful than in the U.S.
There were a couple of people at the clinic that would be considered great candidates for a transplant back in the U.S., but wouldn't even be considered in France, which we thought was very odd. We also found out that there is a real stigma for donating a kidney in France. Andy had a family friend donate one of his kidneys when he was younger. In France, they about fell out of their chair. They said that would NEVER happen and if a spouse wants to donate, there is a very long vetting process that you must follow before they allow it, due to organ trafficking. Each european country is different, so many others would be more accommodating. As for your friend, I wonder if just having an address where you receive mail (and don't fully live?) would count? I'm not sure. Hmmm

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Harold Mayo
9/18/2023 08:25:20 pm

Italy was very specific about needing to live in country. Her dad was excited because he was a history teacher and loved traveling to Italy when he was younger. I am surprised at the stigma attached to donating, I would have thought the exact opposite. I am excited to hear about your journey in the next weeks!

Rachel
9/19/2023 02:16:43 am

If I were in her shoes and could afford it, I think I’d look more into Germany. We were looking into doing dialysis in Italy in a few weeks for a friends wedding, but we’re told their healthcare system leaves A LOT to be desired. We didn’t want to roll the dice, so decided not to risk it and cancel going. People we know have raved about Germany’s healthcare, though. If her dad is up for it, perhaps look into cheap housing where he can go over and, if she wants to, she can go over and stay from time to time until they hit the year mark.
I know in France, you have to apply for a medical card through the government, which is tricky because you can’t apply unless you’ve been there 6 months, which you can’t do unless you have a visa to stay that long. It’s a process!

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Anna
9/18/2023 05:45:14 am

I watched your episode and loved it! Thank you for sharing your story. I always like to know what happens to the people after. Following!

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Rachel
9/18/2023 08:58:55 am

Hi Anna! Thank you for your kind words! Thanks for following our story. Thankfully, Andy is doing somewhat better now. -R

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    Bonjour, Ciao, Salut! My name is Rachel and I am a part-time resident of Provence that splits my time between Pittsburgh, Pa and Vaison la Romaine. Come take a deep dive with me into Provençal culture, food, history, villages, markets and all of the quirks that come along with them!
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