Welcome to Oncology Post 4

We waited to hear back from the hospital.  My in-laws, Susan, and me.  No one left the apartment.  We just sat around, reading and looking out the windows.  Susan slept constantly.  She was in shock.  After a day and a half someone from the hospital called.  It felt like a week since the diagnosis.  It had barely been three days.  The nurse said we were assigned to an oncologist and made an appointment for us to see him the next day.  Friday.  Susan’s parents were coming with us.  She confessed to me that it made her nervous having all of us there.  I said if she didn’t want them there, I would talk to them.  No, she said.  She knew how important it was to them.

“I’m worried that Dad will get . . . you know how he is,” she said.

I did.  He was a fixer.  This was his little girl.  He would want to question everyone about every possible procedure he had read about on the internet.  He would grill everyone from the nurses to the Chief of Oncology.  In other words, he would do what dads do.  She didn’t have the energy for that.  She was focused on trying to process what was happening to her.  She was trying to get her sea legs. The thought of someone rocking the boat made her queasy.

This was all new to me, as well.  I was hoping that it would just be the doctor, Susan, and me.  I am not from a close family.  During times of crisis, my procedure was to buckle down and allow as few people as possible onto my life raft.

 

We were all a bundle of nerves going to the hospital the next day.  I drove Susan.  Her mom and dad drove separately.  It wasn’t a long drive, but it felt like it.

The Oncology waiting room was packed with patients.  Staff members from The Cancer Resource Center were also there promoting cancer awareness.  I remember thinking, “Why promote cancer awareness here?”  It seemed to me like everyone there was very cancer aware.

There were complimentary breakfast snacks, brochures, coffee, and juice.

A woman who looked a lot like Gene Hackman in drag (a la “The Birdcage”) stood in the middle of the floor and addressed the room.  She was solidly built, and stood well over six feet tall.  Her smile was out of place in a waiting room of grim, hopeless faces.  She spoke like someone who wasn’t sure she believed herself.

“Hello, everyone.  Welcome to Oncology.”

She said that many of us were on the verge of a journey that could be overwhelming and frightening.  She informed us that we should grab some snacks.  Eating was very important to keep up our strength.  (This applied to “survivors” and “caregivers” alike.)  She told us her story.  How she had been a nurse in Oncology, and then, two years ago, she was diagnosed with breast cancer.  Then, not long after starting her treatment, her husband was also diagnosed with cancer.  The two of them went through chemotherapy together.  She said they would hold hands while they were receiving their IV doses.  They kept one another strong.

Jesus, I thought.  I respected what she and her husband must have gone through together.  But I still wanted her to stop talking.  I was nervous enough, and she wasn’t helping.  Now I was thinking what if I got cancer, too?  What the hell would we do then?  Thanks a lot for the nightmare fuel, lady!

She finished her introduction.  This welcome wagon wasn’t something that they did very often.  Once a month at most.  She encouraged us to get some junk food before it was gone.  I grabbed some breakfast bars and a coffee.  The coffee tasted like dishwater.  Susan didn’t want anything.

None of us talked.  We sat in silence waiting for Susan’s name to be called.  The office was wall to wall patients.  Not a smile among them.  Some had to stand.  It makes you realize how popular an illness cancer is.

We waited for two hours or more.  I griped.  Susan’s dad occasionally went out in the hall to stretch his legs.  I couldn’t imagine what was taking so long.  Susan said, Look around.  We’re not the only ones who need to be here.  For the next two years, this kind of waiting would be something to which we became accustomed.  The reason was that Sue’s doctor always spent more time with patients than he was supposed to allot.  He also took on more patients than the administrator told him he should.  The majority of people waiting were waiting to see him.

The nurse eventually called for Susan to have her vitals checked.  The rest of us stayed in the waiting room.  After they were done with her, they led her to an examination room.  They called for me to join her.  Susan’s mother and father wanted to be present as well.  I think the nurse wanted to check with our doctor first before stuffing the small room with people, but her father had that desperate look in his eyes and he wasn’t going to be put off.  The nurse relented.

The room was your typical dorm-sized closet.  My in-laws stood wedged between the examination table and the door.  I sat next to my wife in two chairs by the back wall.

Susan whispered to me, “I wish Mom and Dad had stayed back at the house.  They make me so nervous.”

“Your dad is pretty twitchy,” I said.

“I know!” she whispered back.

“Just this first time,” I said.  “Not every time.”

“Yes,” she said. “Definitely.”

More waiting.  We would eventually learn that you still have to wait for a while after being led to a room.  But you get to wait in privacy.

We made small talk.  Read the posters on the walls.  The list of ways to detect colon cancer was particularly pertinent to me at that time.  There was also a drawing of all the Disney fairy tale princesses, only they were bald.  It said, For the Girls Who Are Fighting Cancer.  I wondered if Susan was going to lose her hair, and what she would look like.  This got me to thinking about what kind of hell we were going to be facing together.  I squeezed her hand.  She looked back at me with tired, nervous brown eyes.  She squeezed my hand and tried to smile.

We waited around twenty minutes, then our doctor came into the room like an actor making a stage entrance.  Full of energy and confidence.  He was a short, handsome man in his mid-forties.  “I’m sorry for the wait, folks.  The office is crazy today.”  He smirked.  “Of course, the office is crazy everyday.  That’s why I’m here.  I love it.”  He saw sue’s dad scrunched up against the wall between the table and the door.  “Looks like you brought your whole family,” he said to Susan as he looked at her parents.  Sue’s dad crossed his arms.  You could feel him dig in his heels.  He would not be moved.

Susan said, “Everyone was just so excited to be here today.  What can I say?  Standing room only.”

The doctor laughed.  He offered his hand to Susan.

“I’m Dr. W – – – – – .  I’m going to be your oncologist if you think you can stand me.  I’m going to tell you right now, you have a very serious cancer.”  Everyone inhaled loudly.  “No, no,” he continued.  “Hear me out, folks.  Dad, Mom, ” he said to Sue’s folks, “Hang in there, be strong.  We need you guys.  You too, big fella,” he said to me.  “This is a very rare cancer,” again, speaking only to Susan.  “It’s called G.I.S.T.  Gastro-Intestinal-Stromal-Tumor.  About fifteen people a day are diagnosed with it.  Not very many doctors here have treated it.”

“Have you?” asked Susan.

“Yes, I have,” he said.  “Which is why I’m here.  Kind of a funny story, actually.  End of day, all of the head doctors meet to go over cases and decide who gets assigned to them.  The surgeon who discovered your masses sent his assistant in his place.  I saw your x-rays in her hands and I kind of grabbed them from her.  I told her ‘this is GIST.’  They didn’t know what it was yet.  I said to tell her doctor this one was mine.  I’m one of the few doctors in the area who has treated it, and I really hate this son of a bitch.  Excuse my language, ” he said to Sue’s parents.  “Now, I’m going to tell you,” he said to Susan.  “This cancer is at an advanced stage.  But GIST is unpredictable and there are some great medications on the market that we can try.  At least four fully approved chemo meds.  I’ve seen them do some amazing things.  But I can’t make you any guarantees.  We just don’t know.  Dr W. doesn’t really do anything.  I just give you the pills.  The only person who can fix you is the big guy upstairs.  Right?”

Susan grimly nodded.

“Now,” he said, “the way I am is I don’t hold back.  I believe it’s your right to know the truth about your condition.  I will never blow rainbows up your ass and tell you things are better than they really are.  If that’s not what you want, I can find you doctors who will take it much easier on you.  And they’ll be good doctors.  It’s important that whoever you work with is someone you can trust and someone who’s methods you agree with.”

“I don’t want rainbows.  I want the truth.”

“Okay,” he said.  “Just know that you can change your mind at any time.  No one will be upset.  We’ll find you someone very good, I promise.  Now, let’s look at this thing.”

W. pulled over a monitor and began fumbling around with the mouse and keyboard.  After several failed attempts and exasperated sighs, he pulled up Susan’s x-rays.  In the gray and white contrast, I was able to make out her skeleton, her heart, her stomach, liver, bladder, and a large gray area with white splotches.  I assumed  the white shapes were the tumors.  I think Sue did, too.  Because when he told us the gray was tumor and the white splotches were her intestines peeking through, she reached over blindly and grabbed my hand.

“All of that is inside of me?” she said.

“It is,” he said.  “That’s why your belly is so swollen.”

“I thought I was just putting on weight from my thyroid firing off hormones or something!”

“Nope,” he said.  “That’s all tumor making your belly puff out.  If you feel along here,” he said, rubbing the front part of his gut around the navel, “it probably feels very hard.  And that’s not normal unless you’ve got abs of steel.”

Sue’s folks were speechless.  Her mom had her hand over her mouth, and her dad’s eyes were glistening.

“I thought it was a bunch of smaller tumors,” I said.  “That’s what the surgeon said he saw.”

“No,” W. said, “I think that’s what he assumed he was seeing.  But it’s mostly one large mass here that has metastasized to the peritoneum, and is spreading from there around the lower intestine.  This is why, Susan, we need to start you on those meds as soon as possible.  I’m going to write you a prescription, and we’ll try and put a rush on this.  But insurance companies are notorious when it comes to dragging their feet.  That’s why I need you guys to get them on the phone and make sure they understand the urgency.”

“Ok,” Susan said, frustrated, “What is the urgency?  I mean, am I going to die?  I still don’t know . . . exactly how serious is this?”

So he told her.  “If we don’t get you on medicine immediately, it could be a matter of weeks.”

Susan was having trouble breathing.  She tried to stand up and almost fell.

“Whoopsie-daisy,” said W.  “Here, let’s get you over to the table so you can lie down.  I have to ask everybody to leave except the husband.  Here we go.  Lie down slowly.  There you go.  Now breathe.  Breathe.”  He leaned over and spoke to Susan in a low, soft voice.

“I know.  It’s a lot to take in, isn’t it?”

She nodded, trying to keep breathing while she cried.

“Don’t give up hope, ” he told her.  “Either of you.” He glanced over at me.  “I want you to understand the seriousness of this, but Sweetheart, you’re not going anywhere soon if we all work together on this.  Me and this big guy over here,” he gestured to me, “are going to get those meds.  Starting right after you leave here.  Right? ” he asked me.

“Absolutely,” I said.  “We’ll get the meds, Sweetie, don’t worry.  Don’t worry about a thing.”  I kissed her forehead.

We were given all of the information about the medication we needed.  A “focused” chemo pill called Gleevec.  I will never forget the name of that medication.  The doctor warned us to watch for constipation.  He said that as long as Sue was having bowel movements and passing wind, all was fine.  But if she vomited up fecal matter, this indicated that she had an intestinal blockage and she needed to rush to an emergency room.  He couldn’t stress enough how important that was.

Before leaving, W. felt Susan’s stomach.  Asked if she was in pain.  He squeezed her hand reassuringly, and he said, “Have faith.”  He also gave her a peck on the forehead.  Then he left us alone.  We didn’t say much.  She apologized for dragging me into this.  I kissed her hand and said, “Hey, in sickness and in health, right?”  I guess, she said.

“I love you.”

“Oh, God.  I love you so much.”

 


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