I INCYST... Part 3

(I apologize for the big break in between posts.  My husband and I took a much needed vacation to northern Minnesota.  Now that we're back to our normal routines, I can finally get back to the blog.)

After I had some pain medication, I had an hour and a half to drink a few quarts of contrast.  Compared to barium, it’s nothing.  It still makes you scrunch up your face after taking several gulps, but there’s no gagging involved.

As I drank, the time passed and the shifts all changed.  Lina had worked 7 p.m. to 7 a.m., so I had a different nurse every half hour or so poke her head in my room.  It was getting closer and closer to 9:00 a.m., and I needed to get to work.

I took the bag of fluids and walked out to the nurses’ station. 

“I don’t mean to sound rude,” I said to a group of two men and a woman.  “But I really need to get a CT scan so I can leave a.s.a.p.”

“Let me see what I can do,” one of the nurses said as he looked at a computer screen.  “You know what?  I think we could send her right now,” he said to a fellow nurse sitting next to him and nodding her head.

My wheelchair soon arrived with a quiet, but fast guy to bring me to the room with the huge machine in it.  There are usually a few people involved in administering a CT Scan, and they’re usually behind a wall looking at computer screens or through the window at me.

This is a photo of what it looks like (I took the pic from a hospital in the UK's website).  

I stretched out on my back on the bench, and a nurse pushed a syringe of iodine contrast into my IV.  That causes a tremendous hot flash and you almost feel nauseous.  The feeling only lasts a few seconds.

Next, the machine ordered me to hold my breath as the bench moved through the hole in the machine.  “You may breathe,” the machine instructed.  After going back and forth through the huge hole, the test was complete.  I was helped to my feet and back into the wheelchair.  I was back in my E.R. room minutes later.

It was after 9:00 now.  I called the newsroom to talk with the dayside producer.  I had already sent him several texts and talked with the Sunday morning producer.

I told the dayside producer I’d be in shortly.  “Are you sure? Most people don’t go to work after being in the hospital,” he half-joked.

“Oh, I’ll be fine,” I said.  I was sure this was just another Crohn’s flare.  I’d rather work and be distracted by police scanners, endless emails and phone calls and executing the plans for the day than sit on the couch completely aware of the pain in my abdomen.

After going over story ideas for the reporters and figuring out where to send the morning photographers, I hung up, and started changing from my hospital gown to my jeans and T-shirt.  A new doctor walked into the room.

“Hi, I’m Dr. Jacobson,” he said.  “I haven’t looked at the test results yet, and your nurse says you’re leaving?”

“Yes.  I need to get to work,” I explained. 

“Where do you work?”

“I work for FOX 9 news.  I do a lot of behind the scenes stuff and get our day going,” I said.  And like most Minnesotans, the doctor was eager to know more about my job.  People here are fascinated with people who work for TV news.  They love when they learn Nate works at WCCO and I work at KMSP.  Nate produces the weekday morning news, and I am involved with planning for weekends and some nights, so we’re not really in competition with each other, but people still get a kick out of us.

Dr. Jacobson said if I thought I could go, then he’d give me a call with the results. 

So with no diagnosis, pain medicine wearing off and a bottle with about eight pain pills in it, Nate and I went home.  I changed clothes, Nate made me a lunch and then my phone rang.

“Hello?”

“Is Mary there?”

“That’s me.”

“Mary, it’s Dr. Jacobson from the E.R.  I just took a look at the result of the CT Scan.”

“Did it show any abnormalities?”

“It did.  But this isn’t Crohn’s related,” he said.  “It appears you have a ruptured cyst on your ovary.”

If it’s not Crohn’s, it’s foreign.  I had no idea if that was a horrible thing or a no big deal thing. 

“I think your pain is being caused by some internal bleeding we saw on your scan,” he said.

He told me I’d be “uncomfortable” for a few days, but then I’d be fine.  The conversation lasted about two minutes.

Nate looked at me with anxious eyes.  “Well?”

“A ruptured cyst.  Huh.”

Neither one of us knew what to make of the situation, so I just grabbed the lunch Nate made for me and I jumped in the car and headed to work.

The pain came and went as I organized the day planner and contacted our reporters and photographers.  Our nightside assignment editor called in sick, so I stayed a little longer than I anticipated. 

I didn’t have a moment to research ovarian cysts at work, but when I got home you’d think the first thing I’d do would be to get on the computer and figure out what was happening to my body.  I only had a tiny explanation.

But I didn’t.  The doctor told me this wasn’t uncommon for women and that it would go away.  Fine.  I didn’t call my OB/GYN on Monday, and I went to work Monday afternoon as if everything was back to normal.

By 8:00 p.m., I felt like I was having menstrual cramps, typical Crohn’s pain and a throbbing pain on my lower right abdomen.  Pain medicine wasn’t doing anything to help.

By 9:00, tears were forming.  I HATE crying in front of people- especially at work.  So when I heard “plane on fire” on the scanners, I was distracted making calls to every county dispatch center I could call to figure out what the heck I heard.  I re-routed a crew to White Bear Lake, where I thought the call had come from.

I still say I heard “plane on fire” two times that night, but there was no plane and no fire.  At least I was distracted until the 10 p.m. news was finished.

When I got home, Nate had to immediately take the car so he could go to work.  He produces the 6:00 a.m. news, and he gets to work by 11:00 p.m.  I had about two to three minutes to hug him at the door while I cried on his shoulder.  He wanted to stay with me, but I’d been through worse by myself in the past, and I wasn’t about to let either of us miss work because I was in pain.

I felt so stupid.  Here I was, giving advice to people about making their hospital and doctor visits better and I wasn't taking my own advice.  I didn't listen to my body, I didn't wait to have the doctor go into more of a description of the problem.  So there I was.  In pain, with few answers and all alone... just like 15 years ago.  This time, it was my fault.

I INCYST... Part 2

One of my favorite feelings is walking into an emergency room waiting room to find one person waiting.  I love that I can hear the TV and that all the chairs are empty but one.  That almost always means I will not have to wait very long, if at all, to get a room (or a section behind a curtain).

The intake nurse was sweet as she checked me in.

“Was it busy tonight?” I asked as she typed in my date of birth.

“You’re lucky, you missed the rush.  We just discharged several patients.”  A breather on the weekends is a treat for the nurses at this hospital. 

I was told weekends used to be much worse.  Before renovations, everyone went to the same emergency room.  You might think you were the next person to head to a vacant room, but when all the gunshot and stabbing victims were brought there, you could find yourself waiting for hours- even if you were next in line.

The new renovations kept the trauma out of this part of the hospital so it was pretty much non-life-threatening stuff here.

The same nurse who signed me in and gave me my hospital bracelet let me through some double doors and immediately started triage.  I can’t stress how important timing is.  I remember going to an emergency room when I lived in south Austin, Texas.  I was having a Crohn’s flare, and I waited an hour just to see the triage nurse.  All she did was take my vital signs and put my chart under a pile of others. 

After two hours of waiting, there were still at least eight to ten people ahead of me.  I was so upset that I drove home, watched a movie, took a nap and drove back to the hospital… just in time to wait another hour.  If I hadn’t left, I would have waited seven and a half hours just to be able to put on a gown and rest on a hospital bed.  Once in a gown it was still an hour and a half before I was given any pain medicine.  I never went to an emergency room at 7 p.m. again.

My blood pressure is usually right around 105/60.  Early Sunday morning it was an intense 152 over 85.  That’s the highest I ever remember my blood pressure reading.  Elevated blood pressure is a good indication of pain, so the nurse knew I was hurting.

Before I had a chance to ask her her name, another nurse was waiting with her back against one of two double doors that lead to the rooms.  I thanked the triage nurse, Nate grabbed my bag, and we headed for my room.

Rooms are similar to what they were when I was first diagnosed with Crohn’s.  If it’s not busy, you usually get a room all to yourself.  The call button is still the remote control and it’s still how you hear the TV.  Those TVs are are flat screens now, but Nate still has ridiculously uncomfortable chairs.  How I wish I could have a queen sized hospital bed so he could lie down beside me.  I was grateful his chair was at least padded, but it would make me feel a lot less guilty if it could recline.  


Sometimes I feel worse for Nate than for me.  At least I get pain killers.  He gets a stiff neck that still hurts a few days later.

The first nurse to come in was Lina.  She had dark hair and dark features, though I couldn’t tell if she was Latina or Indian.  A curtain covered the entrance to the room, so when she knocked on the door and started to enter, Nate and I gave our usual high-pitched, “Go away, we’re busy!” followed by laughter.

Patients don’t joke around in the E.R., so we almost always trick and tease our nurses and doctors simply because they’re not ready for it.

I once had a nurse who bragged about his ability to start an IV line.  He was a nice guy, so when he put the needle on my skin, I shouted, “OUCH! What the hell are you doing?” before he even tried to push the needle in.   

He was mortified.  Then I started laughing and he lost it.  He was laughing so hard he had to wait at least two or three minutes to start that IV.

Lina timidly moved the curtain to see what the heck this couple could be doing.  There we were, silly smiles and laughing at ourselves.  When we’re in the hospital, we get a big kick out of ourselves.  OK, I get a kick out of myself regardless of my health or my being in a hospital.  


But the laughing at myself is how I survived years of hospitalizations and four surgeries for Crohn’s.

I turned serious for a moment as I described my pain.  Because we thought it was Crohn’s, I had the pleasure of describing my bowel movements over the past two days.  Nothing brings a couple closer together than a full description of bodily functions. 

If you must know, my bowel movements were normal.  Should have been my first indication that this was not Crohn’s.  I’m so used to going to the hospital, having blood work or x-rays, and then having every test show I’m healthy, that I didn’t even think something else could be causing pain.  When a doctor pushes down on my belly, it hurts… every time.

It was probably five minutes later when a guy came into the room.  He had on a white coat which meant he could be a doctor or a phlebotomist.  He was average height and in shape.  He shaved his head- probably because he was balding.  He must have been early 40s.  He had enough color to show he’d already been enjoying the summertime.  But he was way too casual and cool to be doctor.  I was wrong. 

A week after I posted that doctors like to be called doctor, he said, “Hi, I’m Greg.”

I said, “Hi.  I’m Mary.”

He laughed.  “I mean, I’m Greg.  I’m your doctor.”

“Nice.  I like it.  And I was just saying how you doctors like the sound of the word doctor,” I said.

“She really did,” Nate added.

“I really did.  I blogged about it,” I told Greg.  “I’ll probably blog about you, so don’t screw it all up.”

Greg laughed and shook his head.   

“On a scale of one to ten…”

“And here we go,” I interrupted.

Oh, the infamous pain scale.  A ten was what it felt when I fell after my last surgery because I forgot about the epidural I had, swung my legs body to the side of the bed and tried to stand up.  Falling 24 hours after having some of my ileum removed was a 10. 

But for other people, their worst pain could be worse than that or feel like nothing at all to me.  I do know that unless it’s a certain level, I’m not taken seriously.  So I pick what I think the doc will want to hear.

“Let’s go with eight-point-five,” I said.

“Seriously?” Greg asked.  I was joking around a bit much for someone in that much pain.

“Oh, it’s bad, or we wouldn’t be here.  Look- my eyes are bloodshot.  I never cry.  I totally cried over this,” I explained.

“Well, let’s get you some pain medication and some fluids.  We’ll draw some blood…”

“And it will show you I’m a healthy individual,” I said, interrupting him.

“Every time we come, tests never help,” Nate also explained.

“That’s one of those big problems with having an illness that affects the middle of your intestines,” Greg said.

“I think if I just get some pain meds and fluid, hopefully I can still get to work today.  I’ll bring a few pain pills to work in case the pain gets bad, and we’ll see my gastro tomorrow.”

My plan made perfect sense in my brain.  Greg looked at me like I had seven heads.  “You know, I can give you a doctor’s note.  Where do you work, anyway?”

“Oh, I want to work.  That’s why I’m here.  And they’re counting on me,” I explained.

“She works over at FOX 9,” my husband said.

I explained my job in the newsroom.

“Very cool,” he said.  And he turned to Nate.  “And what do you do?”

“I work at WCCO.  I produce the six a.m. news.”  He grinned.  Nate loves how much people love to hear that we work for competing television news departments.

People in Minnesota are funny.  TV news here is like TV news in small market.  Everybody knows the names of the anchors.  Everyone has been watching the same channel for years.  If you’re on TV, boy, you’re really something.  If you work in a TV newsroom, you’re still pretty special.

I had been on TV with WCCO as a freelance reporter a year and a half ago, and when people learn that, they treat me just a little differently.  Pseudo celebrity, I suppose. 

Greg enjoyed our story, as he clicked his way through my file on the computer. 

My gastroenterologist had transferred from the hospital at the University of Minnesota to this one about a year and a half ago.  So I hadn’t been in the system very long.

“I don’t see a CT scan in your records,” Greg said.   “I think you should have one.”

The three of us talked about the options, and in the end we figured even if I had a test that showed nothing… if I needed a test in the future, at least I’d have something to compare it to.

Little did we know that CT scan wouldn’t be void of an answer.  It would show internal bleeding, and that would explain my pain.  Except the bleeding wasn’t part of my digestive tract.  It was on the outside of my ovary.  I was bleeding internally.

I INCYST... Part 1

Today is Thursday, June 10th.  I haven’t written in a few days, but over the past few days I’ve been busy taking some of my own advice.  And it’s not that easy… especially when I was in the hospital for something other than Crohn’s.  I was reminded very quickly what being a new patient was all about.  This expert patient was not so sure of herself.

But I turned to my own thoughts and words as a road map to navigate this rough, painful week.  Now that several days have passed, I’ve got some of my energy back, and I was finally able to hit the computer in these wee hours of the morning.

So let me back up about a week or so.

My abdomen started to ache just a bit.  No big deal.  But on Saturday night, I could not sleep because the pain was so intense.  It felt different, though.  This was below my belly button, and usually pain from a Crohn’s flare was all over the abdomen. 

After a few hours of my husband’s snoring, of my side going numb because it hurt to move into any other position and my own moaning, it was apparent I’d have to go to the E.R.  The fact that I woke up my husband without trying was quite rare and quite telling.

It was about 4:00, the birds were chirping, and there would soon be the slightest bit of light outside the window as the sun reminded us how long the days were.

“Let’s go,” Nate said.

With the exception of the pain and numbness on my side, I was actually comfortable.  A fan lightly blew the crisp night air around the room.  The comforter was cool to the touch, but warm underneath.  I smelled the myriad of perennials growing around our first-floor apartment of the 100-year-old house.

“Are you sure?” I asked.  I was really asking Nate if he was sure he didn’t mind getting out of our bed and leaving our most tranquil place in the world behind us so he could sit in an uncomfortable chair under fluorescent lighting.

“Let’s go,” he said again.  He knew the drill.

Nate is the loveliest person I know.  He is my best friend and cares for me deeply.  Unlike all of my other relationships, ours did not start with fireworks.  It was practically nothing, but has turned into something that continues to grow a little more every day.

People like to say their wedding day was the best day of their life.  But I’m so much closer to my husband now than I was then.  We’ve had so many best days since then, and I’m sure we’ll continue to have countless more.  It might sound hokey, but when a chronic illness forces a life lived day to day, it’s impossible not to live in each day and live in each moment. 

I first met Nathan when the two of us were working in Dayton, Ohio, at the ABC/FOX affiliate.  He was the executive producer and creator of a four-hour morning show.  When I arrived as a reporter there, I didn’t like him much.  We were both passionate and creative, and when I became the morning show reporter, we bumped heads.  A lot.

It didn’t take long for that spark we felt for journalism and for television and for so many things in life to become a spark we felt for each other.  Granted, it was teeny tiny as we became friendly, then friends, then eventually something much more.

Nate reminds me of a big bear just out of hibernation when he stretches in the morning.  He’s 6’1” and his chest expands as he lets out a big “ARRRGGHH!” -head tilted back, eyes closed and fists reaching for the corners of the room. 

As I looked up at him Sunday morning, I could see the dark facial hair that outlines his jaw and the hairs the form a goatee below his nose and around his mouth.  When his big stretch was complete, he walked to my side of the bed, leaned over and stroked my hair.

His long eyelashes and beautiful green eyes asked me nicely to get up.  Then he whispered, “C’mon.  Let’s go.”

He let me get out of bed on my own as he got dressed, got something to eat and drink for the road, then came back to check on me.

Nate knew the rules of the E.R.  We’ve been married for about a year and a half now, but he’d been with me in the E.R. dozens of times in the three and a half years I’ve known him.

It had become routine.  We didn’t need to discuss the timing.  It was perfect.  It was four in the morning on a Sunday…doesn’t get better than that.  Our wait time would be minimal.

I half-rolled, half-slid out of bed.  I grabbed the first thing I could find with a relatively loose waistband- a skort, of course… then a T-shirt, sweatshirt and sandals.  I pulled my hair back in a ponytail and grabbed my glasses.     

Nate gave me a Diet Mountain Dew to throw in my bag, along with my meds and my wallet. 

“Am I forgetting anything?” I said to no one, as I heard Nate grabbing the keys in the kitchen.

I can hit the snooze several times, I take forever to get out of bed, and I’ll stay in my pajamas for hours if the day lets me.  But from the very second I wake up, I’m usually alert, I’ll laugh at a joke and I can talk.  I can always talk.

My husband is grumpy when he first wakes up.  Cranky, moody and grumpy.  I’m still learning to get used to this.  Sometimes I start telling a story, and I think he’s downright angry with me or with the topic.  I have to stop talking.  That is not easy for me.  But when 20 minutes or so passes, the first hint of a smile hits his cheeks, and I can begin a conversation with him.

We were silent as the car sped through the darkness down University Ave. toward St. Paul.

Those damn potholes.  I have lived in many cities in my adult life.  I’ve lived in the north, the south, big cities and small towns.  Minneapolis and St. Paul, by far, have the worst potholes of anywhere.  Being a passenger on the road to the hospital is painful.

I grimaced as we made our way through a few lights. 

“How you doing, hot stuff?” Nate asked as he touched my cheek, then put his hand on my leg and squeezed.  Twenty minutes were up. 

“You know, if we can get in and out, I can still make it to work on time,” I said, looking at the clock and imagining the next few hours.

“You can’t call in sick?”

“Really?  Who is going to come in?” I asked. 

Right now I work part-time as an assignment editor at the local FOX affiliate.  One of our full-time assignment editors quit in March to travel the world, but as is the case at every station I’ve ever worked, filling a vacancy is not a priority.  A vacancy is money to be saved.

But more than my concern for who would come in on a Sunday morning to sift through the daily planner, the press releases and the schedules, listen to scanners and check voice mail and email, and create a working rundown of which reporter and photog would do what that day… I absolutely could not miss work. 

I had only missed a few days because of a buldged disc in my back thanks to my ill attempts at breaking up an icy porch in the winter.

But I had not had one sick day because of Crohn’s.  I’d been at FOX for more than seven months, and I hadn’t had to call in sick.  Not for my gut.  I was not about to ruin that streak now.  No way. 

We would get in, get pain meds and maybe an x-ray, and get out.  I would be to work in five hours.

I did make it to work later that morning.  But this whole trip and all this pain had nothing to do with Crohn’s.  Of course I didn’t know it then, as Nate pulled up in front of the hospital.

I walked to the front doors as Nate parked the car.  I could barely stand up straight.  This pain was abdominal, but it was different.  I was just so used to the E.R. trip for Crohn’s flare-ups, I didn’t pay any attention to what my body was telling me.   And it was not telling me that anything was wrong with my digestive system.  My reproductive system, yes, but not my gut.

Drink! Drink! Drink!

I was still waking up.  I brushed my oily hair and put on my glasses.  Now that I finally got some rest, I was keenly aware of how long it had been since I’d had a shower or even brushed my teeth.

I hadn’t eaten in days, but the pain and exhaustion kept me from feeling hungry—unless that Hardee’s mushroom and swiss burger commercial came on again.  I wanted one so bad.

All the lights were off, but the winter sunshine filled my room at morning as the doctor stopped for his daily visit.   He directed all of his comments and questions at my mom.  But all she could do was politely nod.

I had had enough.  It was time people started filling me in on what was going on with me.

“I know I lost a lot of blood.  How much did I lose?” I asked the doctor.  I was weak, but my tone was assertive.

“We’re really not sure at this point,” he said as he looked at my mom.  “But yes, it was significant.”

What was up with that guy?  Look at me, you jerk.

“How many more blood transfusions do I need?” I asked.

“We’ll keep looking at the blood tests to find out for sure,” he said, eyes glancing around the room.  “I think at least one more pint.”

“How much could I have lost before I died?” I asked.

“Not too much more,” he said.

“Where’s all my blood coming from?” “What kind of tests do I have to do?” “Will the preps be as bad as yesterday?” “What are some of the possible things that could be going on?”

He answered each question with an answer that did me no good.  But at least he finally started making eye contact with me.

“We’re still looking for the source of the internal bleeding.” “We need to be able to get a better look at your digestive tract.” “Yes, there will be preps.” “I think we need to wait and see what the results look like before we start guessing.”

The doctor was clearly annoyed.  His two minutes with me were up, and I was bothering him.

Mom interrupted the conversation.  “Mary Sue, stop asking all those questions! Your doctor is very busy.”

I wasn’t satisfied with the answers, but I was pleased that I finally had the guts to speak up.  If I could talk to that 17-year-old girl, I’d tell her to keep right on asking questions. 

I would tell her, “Ask as many as it takes to feel comfortable.  You’ll need to recount this situation many times to many doctors and you need to know what’s happening, because even if you get a copy of your chart, you can’t always understand it and not everything is in it.  Ask questions.  Write down the answers if you have to.  Never let your doctor leave until you feel comfortable with whatever is going to happen next. Never.”

My doctor wrote a few more things in my chart, and told me he’d see me later.  About ten minutes later, a nurse came into the room with a Styrofoam cup.  I hate Styrofoam cups.

This was the third day in a row I had this nurse for the day shift.  When we first came to the hospital a few days ago, my parents and I were under the old-fashioned assumption that the quality of the doctor would dictate the quality of the hospital stay.  I was quickly learning why having a nurse or a team of nurses who like me and truly care about me would make hospital life much easier to live.

One of the first qualities I appreciated in my nurses was empathy.  She was shaking a bottle of white liquid. 

“This is called barium,” she said.  “It’s important to drink it all, even if it doesn’t taste very good.”

“But we’ve already cleaned out my insides,” I complained.

“I know, hon.  But you need this to make your insides light up so we can see what’s really going on in there,” she explained.  “This is strawberry-flavored.  Drink as much as you can, okay?”

The barium had the consistency of a milk shake.  I used a wide straw.  Strawberry flavored?  What’s the point?  Imagine blending up some metal, chalk, expired milk and two strawberries.  It was horrible.  I gagged.  My eyes teared up as I tried to swallow.  I tried again.  And again. 

I finally finished the cup.  I couldn’t get that horrible taste out of my mouth.  The nurse walked back into the room with a bigger cup and a bigger plastic bottle. 

“That was a great start, Mary!”

A great start?  I had to drink more of this nasty shit?    

"Hello, hello!"  The guy with the sweet Nikes had come to wheel me down to radiology.  He helped me onto the bed he brought and attached my IV pump and tubing to the side of it.  "And we're off!" he said as he whisked me out of the room.

“Don’t forget the cup!” my nurse said running after us down the hall.

Shit.  Why did she have to be so good at her job?

“You doing okay?” my chauffeur asked. 

“I guess.”

“Yeah, this test is hard on everybody,” he said with a laugh.  “You should see some of the older guys.  It takes them hours to drink that stuff.  They act like little kids.  I wish they could see how tough you kids are.”

“So what’s actually going to happen in there?” I asked.

He was moving fast and taking corners with ease.  The whole time he was explaining what was called a G.I. Series, sometimes called a small bowel series when the doc is only looking at the intestines.  Every 15 minutes or so I’d drink more of that awful barium.  In between each cup, they’d take a series of x-rays.  The barium would illuminate my insides so the doctors could see the shape of my stomach and intestines.  They were essentially going to watch my digestion in progress as the barium made its way through my system.  They would be able to see if there was any narrowing or blockages along the digestive tract, and hopefully find an abnormality that would explain my internal bleeding.

That dude knew what he was talking about.

“How come you’re the first person to explain what this is all about?”

“Your nurses are sweet, but they sure are busy,” he explained.  “And I’ve brought lots of people down for this, and I usually hear all about it on our way back to the room.  So far, you’re doing a great job.”

That guy was awesome.  I was so glad to have some of my energy back.  He was tall and skinny, walked fast in his Nikes and seemed to know everybody in the building.  He must have waved or said hello to eight people in my quick ride down to radiology.

“Ok, darlin’… I’ll see you soon,” he said as he pushed his foot down on the locks on the wheels of my bed.  He called out a woman’s name in radiology, waved to me again and was gone.

“You’re Mary?” asked the radiology tech.

“Yep.”

“Okay.  Right in here.”  I don’t remember what the tech looked like, only that she seemed homely and was too quiet compared to my transportation guy.  For a little thing, she was really strong.  As I put my arm around her shoulder, she let me put most of my weight on her as we did a sort of three-legged race walk to the long table.  She helped me stretch onto my back.  Every part of my body hurt.

“Try not to move, okay?  The radiologist will be in soon.”

Any room in the hospital that has a big machine is going to be cold.  This machine was gigantic.  I was freezing.  The light mood of my Nike shoes guy turned gloomy.

It took the radiologist and his two assistants about ten minutes to put on the protective vests, to get the machine ready and to get started.

This was the first time I’d ever seen this guy in my life, and he didn’t introduce himself.  He just talked in low tones to his assistants.  I didn't know that having a friendly and outgoing radiologist is a treat and very rare.

He reached for the machine above me.  There were handles on either side of what looked like a huge, metallic square hose.  The exterior of it looked like an accordion as he moved it up and down and back and forth.  It wasn’t actually a hose- at the end of it, where the two handles were, was glass.  Behind the glass was the x-ray camera.

As he moved the camera over my stomach, he flipped on a light to project a little rectangle onto my hospital gown.  He was moving this great big machine an inch to the left, then up…then the light would turn off.  He’d turn it on and keep maneuvering until it was just where he wanted it.  Then he took some pictures.

This wasn’t so bad.  Drinking that barium was worse than the test itself... until his assistant handed him a paddle with a little ball attached to the head. 

“I’m going to put pressure on your abdomen now.  It may be uncomfortable,” he said without looking at me.

Uncomfortable?  Yeah, I screamed out loud in discomfort.  Beware of the word uncomfortable when anyone in the medical profession uses it.  Uncomfortable usually means horribly painful or downright disgusting.  This hurt like hell.  I felt like a dying animal as I was poked and prodded.  I let out painful moans that were ignored.

Five minutes later he left the room.  The homely assistant helped me sit up.  She checked my IV pump and brought me a wet washcloth.  Then she gave me that stupid cup.

“Try to drink all of this by the time they come back in a few minutes.”

I tried to guzzle it down, but I kept gagging.

“What seems to work for most people is just drinking as much as you can.  When you start to gag, just bite down on the wet washcloth.  Just keep trying to drink.”

Drink until you gag.  Sounds like a frat house hazing.

The drinking and the x-rays continued for about an hour and a half.  I hurt from that paddle, I was bloated and I just wanted to go back to my room where the nice nurses would have new sheets and blankets straight from the warmer waiting for me.

My speedy delivery guy was back and helped me onto the bed on wheels.  I asked him to drive a little slower.  I felt like I just drank a gallon of lead. I practically did.

“That barium is just the worst, isn’t it?”  he said while making a clear effort to slowly move me down the hall and onto the elevator.

He pushed me through the double doors into the Peds unit. 

“You did great,” my nurse said with a big smile.  I was glad to be a kid at that moment.  A month later and I would have been mixed in with all the whiny adults and the run-down nurses who don’t talk to you like you’re a precious child. 

“When will we know what’s wrong?” I asked as she was moving my IV pump and pole back in place next to my hospital bed.

“Hopefully your doctor will take a look at the film and let us know when he stops by this afternoon.”

This was about to be the first of many, many tests that showed my digestive system looking perfectly healthy while I was doubled over in pain and losing blood.  Next on the list of tests- putting a scope with a camera into the top and bottom of my digestive tracts.  An endoscopy and a colonoscopy would require cleaning out all that barium.  Big surprise.

I was finally back in bed, and I turned on the TV just in time to see the Hardee's commercial for their mushroom and swiss burger.

I was full of barium, but I knew I could eat five of those burgers.  I was sick of ice chips.  And I was becoming more and more annoyed.  I could handle most of this hospital stuff if I knew what the hell was wrong with me.  Even a total guess would be great.  Then again, when I got my guess, it was one of the stupidest things I'd ever heard.  And my doctor was serious.

One Mother of a Night

My parents finally arrived.  I have no idea how long it took them to get to the hospital, but with the drive, it was probably an hour or so. 

I felt Mom’s dry, scratchy hands on my face.  “How’s my little Mary Sue?” she asked as she stroked the hair around my face.  My middle name is Suzanne, but when I was a kid, everybody called me Mary Sue.  Now that I was in high school, only my mom and some of the moms from childhood called me that.

“I’m OK,” I said quietly.  I had been lightly sleeping.  I was on my second pint of blood.

Dad walked in and immediately turned on the bright overhead lights.  “You OK?” he asked loudly.  I smiled and nodded. 

“Patrick! Shhh!” my mom said, scolding him and motioning him to turn the bright light off. 

Just to my left about three feet was the door to the bathroom.  Juvenile wallpaper decorated the room in the pediatrics department. In front of me was a grainy TV that hung from the ceiling and had cable TV- a luxury considering we only had the local channels at home.

The remote was like a radio.  It had one button for the TV and one to call the nurse.  You could turn it on, go forward through the channels, then turn it off.  That was annoying, and so was the sound.  There wasn’t closed captioning and my dad couldn’t hear a thing.

This is the version you'd find today... it actually lets you turn the channels up or down!

So there we were.  The three of us just sat there as I was given blood.  We just sort of stared at the TV not saying anything.

I was still exhausted from losing so much blood, but with every blood transfusion, I was slowly feeling the return of energy.

My brain started working, and I started considering my plight.  And I started to wonder why my parents were content with not knowing what was happening.

As I look back, I think Pops might have been a little embarrassed to ask questions.  He couldn’t hear well, and often waited for Mom or one the kids to explain what he missed.  He didn’t want to seem ignorant, either.  But none of us knew a damn thing… not even the doctors. 

Mom grew up in the 1940s and 1950s.  Like most good Catholics, she didn’t question authority.  Over time I’ve learned that you don’t have to be a good Catholic to feel like the doctor is omniscient and shouldn’t be questioned.  Most people never question a doctor or nurse.  It’s called a second opinion because that’s what it is… an opinion.  But for some reason, many of us think a doctor is always correct when making a diagnosis or deciding on how to treat a certain condition.    

Under the TV was a small, wide table- it kind of looked like a coffee table.  That’s where the Christmas tree decoration stood.  And in front of the table was Mom’s purse and an overnight bag, though I thought they had just brought me some extra stuff- like magazines or nail polish or something.

“Is this blood transfusion safe?” Mom wondered out loud.

“Mom, they test for AIDS and all kinds of diseases when you give blood,” I said.  “The Red Cross ends up throwing away a lot of blood because they are very careful.”

“I’m so worried about you,” Mom said.

“Thanks, Mom.”

“Are you OK?  I just feel so terrible,” Mom said.  It took my mom a long time to accept that having three kids with Crohn’s Disease wasn’t her fault (two brothers were diagnosed soon after I was).

“I’m fine.  This blood is a little uncomfortable.”  It was.  After hours of blood pumping into me from the same site near my shoulder, my whole arm ached- right down to the fingers.

I fiddled with the tubing, but it didn’t help.  When I looked back up at my parents, Mom was crying and Dad had his arm around her while giving me little smile. 

What’s with the drama, I wondered. 

My mom suddenly sat up straight and wiped her tears.  “I’m going to stay.  Mamma’s going to stay with you tonight so you don’t have to be scared,” she said to me.

No.  No, no, no.  Please, God, no.

“No, you don’t have to,” I said.  “I’ll fall asleep fast.  Why don’t you just come back really early in the morning?”  I asked… one suggestion after another.   “You’ll be bored.  Wouldn’t you rather go home, shower, get some sleep and then come back?”

Nope.  She felt guilty for going to that damn “party” while I lost all that blood.  She was going to make up for it by sleeping on a cot next to her daughter.  As she turned toward her overnight bag, I realized not only did they not bring a book or nail polish, I had to endure a sleepover with my worried mom.  I pleaded with my eyes and shook my head violently no to my dad.  I even mouthed, “NO!”  He looked down and shook his head.  His body language said, “There’s nothing I can do about it.  The woman’s got her mind made up, and I don’t know what else to do.”

“Well, you better go.  The kids are probably tearing the place apart,” Mom said to Dad. 

I was angry with my dad for not saying anything, but I was upset that I didn’t say anything, either.  I was so sick of just accepting the decisions of all the adults around me.

My stomach hurt so much.  I lost a LOT of blood, and we didn’t know why.  I was doing a good job of reading fashion magazines and watching TV to get my mind off things.  We were only allowed to watch shows like “The Cosby Show” or “Little House on the Prairie.”  We watched the news and a little PBS, but that was it.  Even with its grainy picture and terrible sound, cable was the best thing about that hospital.

The nurses had to be a close second, though.  Pediatrics nurses always talk in such soothing tones, even to a teenager and her parents.  Every one of them was sweet.  Some were really, really sweet.  I thanked God for those nurses that night.

As my mom struggled to unfold her cot and get ready for bed, she was slowly losing it.  She was upset with herself, with my dad, with me, with an interrupted Christmas, with doctors who didn’t know anything, with that stupid cot… I could feel a storm brewing.

I was right.  First she was upset because she couldn’t sleep with the TV on.  So I turned it off.  One or two complaints launched a litany of troubles.  Her twin sister is awful.  Her brother is awful.  Her mother is awful.  She does everything for everybody.  Nobody does anything for her.

My night nurse checked in on us more than once.  Mom said in a very upset, but trying-to-be sweet voice, “Oh yes, it’s just been a difficult day.”

“Oh sure, I understand,” said the nurse.  And she was gone. 

Dammit!  I was hoping she'd say something useful.  “We’ve got sick kids and babies so shut up, you crazy lady!!” 

Man, that was one of the longest nights of my life.  You know, from the time those nurses were calling my parents to the time my mom was bitching in the dark to the time I got to sleep, I bet only three hours elapsed.  It felt like two separate days full of memories.  The anger, outrage, fear and helplessness It was all just festering inside of me.  I was too weak to get into a fight because I was too weak to win.

I eventually fell asleep and woke up to a shooting pain in my arm as a third pint of blood was making its way through the IV and into a vein.

It was around 8:30a.m. on the 29^th.  I woke up to see Mom scurrying around the cot, folding a shirt, putting a comb through her hair, putting on lipstick…. the normal things a mother does when her daughter is the one suffering on the other side of the room. 

I told this story to a friend of mine once.  She was my age, but she had two children.  She told me that when I become a mom some day, I will be able to see everything from Mom’s point of view.  My friend said as badly as I hurt physically was how badly my mom hurt emotionally.  I don’t have children yet, but as I’ve grown older and become a wife, I’ve gained some perspective and understanding.

At the time, I hated her.  It was easy to be so angry with her.  I was going on day four of dealing with pain and no answers, but who was I supposed to be angry with for that?  It was much easier to hate Mom.

I was sick of not having answers.  I was sick of letting the doctor not giving even a guess as to what was happening.  I don’t know if it was my mom, my own frustrations, a boost in energy from replenishing my blood supply or the realization the night before that I had to start sticking up for myself, but when the doctor came into the room that morning, I was not the same patient I was the day before.

“Good morning,” he said while flipping through the pages of my ever-growing chart.  “How are we doing today?”

“My arm hurts.”

He didn’t say anything.

“From all the blood…”

Nothing.

“Maybe we can move this IV to another vein and give this arm a rest?”

“Sure, we could do that,” the doc said without looking up.  He paused, closed the chart and looked at my mom.  “We didn’t notice anything abnormal on yesterday’s x-ray.  Once we can finally see the results of today’s tests, we’ll have a good understanding as to what’s causing all of this.”

My mom just gave him a worried look and nodded.

I broke my silence.  From that moment on, I’d never be silent again. 

Guts and Blood

It was now December 28th, and the holidays were still being celebrated in northeast Wisconsin.  All the kids were on Christmas break, and we didn’t have Facebook or cell phones.  So my only visitors were my parents. 

When the nurse told us that I wouldn’t be having any tests done that day, but that we’d wait until the 29^th, there wasn’t much to be done.  My insides were cleaned out, I was sucking on ice chips, and no one would be visiting because no one outside the family even knew I was there.

Mom and Dad were antsy.     

I heard them outside the door talking about my Aunt Mickey’s Christmas dinner that night.  My mom’s twin sister is a nun, but she was a great baseball player as a kid, so instead of calling her Sister Elise, we called her Sister Mick or Aunt Mickey, after Mickey Mantle.   My brothers and sisters, along with Mom’s younger brother, Danny, and his wife, would go to Aunt Mickey’s house every year for her Christmas supper.  We’d check out her decorations and the gifts she got from her students while doing our best to be polite. 

Mom was a nun for a few years before she met Dad, and she was still a good Catholic.  The obligation to visit her sister that night was giving her a serious guilt trip.  I could hear her crying and saying, “We can’t just leave her all alone while we go to a party.”

A party?  That’s not what I would call it.

“You guys should go to Aunt Mickey’s,” I said with a yawn.

“Oh, no…”

“Why not?  It’s just me, and I’m just going to watch TV.  We’re not even doing any tests until tomorrow.”

“Do you think you’d be OK?”

“Yeah.  I know how to ask for more ice chips,” I said.

When conversations are brief, and especially when they are in quiet and low tones, it’s extremely difficult for my father to hear or understand them.  So he often finds himself sort of standing behind the discussion, not knowing what’s being decided.

My mom kissed me on the forehead and said they’d see me soon.  Dad smiled at me and waved good-bye as they walked out, about to drive 40 miles to Aunt Mickey's house.  They could have been going to the cafeteria, for all Dad knew.

An hour or two after my parents left, the TV was on, but I wasn’t watching it.  I was so tired, and I started to hurt again.  I hurt so much.  I remember feeling guilty about hitting the red emergency button for the nurses.  I felt like I was bothering them.

“Can I help you?” the little speaker blared.

“Yes.  Can you send a nurse?” I could barely breathe out.

“A nurse?  Why?”

“Please help,” I grunted.

Two nurses quickly came into the room as if they were ballet dancers in orthopedic shoes.  One grabbed a bed pan and the other lightly lifted my head and helped to turn me.  I know I told them I needed to go to the bathroom and that I was in a ton of pain, but I don’t actually remember saying the words.

They were like fairies.  In my memory, their movements were quick, but graceful, and they both smiled.  I know one of them wiped my ass again, but I don’t remember it happening, and I don’t remember being grossed out with the situation or grossed out at my own body. 

I was so drowsy that I didn’t realize how much liquid was coming out of my body.  Over and over, the two nurses would turn me on my side, give me the same soft instructions, and place a bed pan under me, only to remove it a few minutes later.

The nurse with the curly light brown hair came back into the room.  It was dark, and my TV wasn’t on.  It felt like midnight.  It was only around 8 or 9. 

“Mary,” she whispered.

I opened my eyes, but I couldn’t say anything.  I was too exhausted.

“Mary, you’ve lost some more blood, hon,” the pretty nurse said as she placed her hand on my arm.

She told me I needed to have a blood transfusion.  She said I needed my parents’ permission because I wasn’t an adult yet.  I was in a daze.  She wasn't making sense.

“How much blood did I lose?” I asked.

“We’re not quite sure,” she said. 

“How much blood are you giving me?”

“Each transfusion will give you about a pint of blood, and the doctor has ordered at least a few pints.”

I didn’t realize my body should have about nine pints of blood flowing through it.  If I had, I would also have realized I lost about half my blood supply.

“Am I going to die or something?” I didn’t really think I was going to die.

“We just need to get your blood levels way up if we’re going to get those tests done,” she said confidently, not telling me that yes, I could die without the blood.

Another nurse, a little older, but still full of energy, walked in and said, “Mary, we’ve tried a few phone numbers.  Do you have any idea where your parents might be?  We need to get their permission over the phone before we give you any blood.”

I sort of shrugged as I closed my eyes.  I just wanted to sleep.

She put her hand on my arm and said, “Mary, this is serious.  It’s important we talk to them.”

I remember becoming angry in my confused state.  I did tell my parents to leave, but I wanted them to fight for me.  Their teenage daughter lost all kinds of blood, had to take harsh laxatives all day, couldn’t enjoy a minute of her Christmas break, and was most of all… lonely. 

And they were off having some dumb noodle and cheese and corn casserole with sugar cookies and chocolates, admiring some dumb green and red artsy craftsy thing on the wall or a new afghan that someone from the convent had knitted. 

They should have known better than to leave me.  But why would they?  I was the first of their seven kids to ever stay in the hospital.  They were learning how all of this worked, too. 

It was difficult to grasp.  For the first time in my life, my parents disappointed me.  For the first time, they didn’t have the answers.  For the first time, I had to start taking some responsibility for what was happening to me. 

I was just a kid when I arrived at that hospital, but in one moment I became an adult.

Everybody was listed in the phone book then, so it wasn’t long before a red bag hung next to me, and someone else’s blood was slowly pumped into me.

Having just given blood a few weeks ago, I understood I wasn’t at risk for contracting a disease or getting HIV.   Even if I was concerned, I was too light-headed to care.  I just wanted to sleep, but the nurses insisted on waking me up every ten minutes.  I figured they didn’t want me to fade into a coma or something, but I just wanted to sleep so badly.

Of everything I could have been feeling, I was actually annoyed while two women were doing their best to save my life.