Esophagectomy

This is what happened when Melinda had surgery. Melinda will be called ‘M’ because I’m a lazy typist.

EC T3N1M0. Ivor-Lewis, 2-16-10. Surgery and hospitalization was at a private, religious hospital that is regarded as the best facility in our region. There were 2 surgical teams, a cancer team and a thoracic team. We were told the cancer team would go first. They would remove the cancerous area and stabilize what was left of the stomach. This would take 3-4 hours. The thoracic team would go second. They would do the pull-up and reconstruction. This would take another 4-5 hours.

We got to the hospital about 6:30 am on a Tuesday. M was taken back for prep. I saw her 45 minutes later. She was wearing a gown with her butt hanging out, and several IV tubes. She was already under the effect of drugs and her spinal tap was in place. The onc surgeon came in for a few minutes and then M was wheeled away for surgery. This about 8 o’clock.

Around 11:30, the onc surgeon met with me and said the thoracic team was in the OR. The cancer team’s part of the surgery went well and M was doing OK. There were no visible signs of mets to the liver or any other organs.

Around 2, the nurse on the thoracic team called me in the waiting room and said the surgery was going well and M was doing fine. There were no visible signs of mets to the lungs. Around 4, the nurse called me again and said they were closing and the surgeon would see me in a few minutes. At 4:30, I met with the thoracic surgeon. He was everything went well, he saw nothing in the lungs and M was in recovery. He said the next 72 hours were critical, because several things could happen and none of them were good. His biggest concern was the stomach dying. A normal stomach has 4 major arteries, but after surgery, the stomach only had one artery feeding it blood. Pneumonia was also a major concern.

At 5, the nurse from recovery called and said M was in trouble, they couldn’t get her off the respirator and breathing on her own. He called again at 5:30 and said they were still working on her. At 6, he called and said that she was breathing on her own and was in MICU. I was allowed to see her for about 15 minutes. She didn’t know I was there. She had numerous tubes in her. She writhed on the bed and gasped, “oh, oh, oh.” That was the only response she gave to me. When I saw her next, 9:30 that evening, she was sleeping.

The tubes in her were:

--NG tube. This tube was in her nose and went down into her stomach.  The stomach had been severely traumatized and it excreted various kinds of fluids, ranging in color from green to brown to a mixture. The NG tube was connected to a pump to pull out these fluids and let the incisions heal.

--Oxygen tube. This was in her nose.

--Chest tube. This was in her lower right side/back and was connected to a plastic container. It was leaking reddish fluid.

--Central IV in her shoulder. This is the IV that is responsible for many infections in the hospital. The nurses should only touch it with gloved hands and should clean all the openings with alcohol before accessing it.

She had many bandages and was wearing a large velcro strap around her stomach to stabilize her incision.

She was in MICU for 3 days. I saw her 4 times a day, for 30 minutes each time. The first thing I did when she was in MICU was give the nurse my cell number and have her write it on a sticky note on the front of M’s file, so they could reach me. M gradually got better and became aware I was there and would talk to me. She sat up in bed on the second day. On Friday, the catheter was removed and she was transferred to a room on the thoracic floor. She was heavily drugged, and wasn’t feeling much pain. She was laughing and optimistic. She called her sister and some of her friends.

Friday evening, M decided she hated the NG tube and she kept trying to pull it out when she dozed off. This tube cannot be moved, since it cannot be reset, so I had to watch her closely and stop her from pulling at it. This was the night when the nurse decided she was suffering too much. He violated protocol, opened her morphine pump and set it to continual drip. When the shift changed at 7 Saturday morning, the nurse practitioner came into the room. I was sleeping on a cot. The NP found M unresponsive, with her oxygen level in the 60 percent range. He started screaming, “I want respiratory here NOW!” and nurses came rushing into the room, about five or six of them. The team worked on M for about 30 minutes, giving her injections and covering her with blankets and turning the heat way, way up. She finally responded. The NP told me she had been about 30 seconds away from being taken to cardiac intensive care and calling a heart surgeon. The records showed the morphine had been dripping all night at several times what the surgeon had ordered, and neither a nurse nor a respiratory therapist had been to check on M since 2 am. Both the nurse and the RT were disciplined and suspended.

M was traumatized by this ordeal and refused to use her morphine pump afterwards, so she was in more pain than she should have been. She stayed in the hospital for six more days and was released the following Friday.

MAJOR EVENTS:

--The OD fiasco.

--Passed the ‘leak test’ on Monday morning, so the NG tube was removed.

--Stomach incision became infected and was ‘opened up’ by the surgeon on Monday afternoon. It became infected at both ends and began ‘tunneling’ or growing toward each infected site beneath the skin. This treated with antibiotics and a ‘wet-dry’ bandage, when gauze soaked in sterile saline solution is packed into the wound with a long cotton swab and then it is covered with a dry gauze. This has to be removed and repacked each day by the caregiver once the patient goes home. I learned that pink wounds aren’t ‘healthy’ as I’d previously thought. Pink means danger. A wound that is healing normally should be brownish, like raw hamburger that’s been exposed to air. The wound bled profusely each day when I removed the dressing, but this was good---‘blood is our friend’ the nurses told me.

--Chest tube removed on Wednesday.

--Biopsy results on Wednesday. The tumor still had some living cancer cells in it, so the chemo/rad hadn’t been completely effective. 27 lymph nodes had been removed and all were negative. The onc surgeon said M wasn’t a T3 when he saw her in the OR but was a low T2 and maybe a T1.

LESSONS LEARNED:

--A caregiver will probably be unpopular. I exchanged words with several nurses during M’s hospitalization, over inattention, poor sanitation, etc. Nurses are like the normal bell-shaped curve. There’s a few excellent ones on one end of the curve. There’s a few horrible ones on the opposite end of the curve. Most are in the middle. They’re all overworked. I also butted heads with one doctor because M was having panic attacks and I finally got her some Xanax, which helped.

--Nurses work in 12 hour shifts. Each shift has what is called a ‘charge nurse’ or a ‘lead nurse.’ This is the most experienced nurse, the supervisor. If you find a nurse who’s good, go to the charge nurse and ask that this nurse be reassigned to your patient the next shift she works. I never had any problem doing this.

--I felt confident I could physically handle M, so I learned how to unhook and then reconnect all of her tubes. I got her out of bed and put her in her recliner. I bathed her with soap and a washcloth. I put her on the portable toilet and reported how much her kidneys produced—another post-op concern. I took her for walks around the unit. The surgeon wanted her to walk twice a day, but I pushed her to walk 3 or 4 times a day. If you can’t do this, then expect a wait before the nurse can do it. If you have a male family member or a male friend who comes to visit---put them to work helping with a walk or whatever.

--Remove the patient’s eyeglasses before breathing treatments. The fog from the treatment will coat on glasses and is difficult to remove.

COMPLICATIONS:

--Infected incision.

--Elevated heart rate. Called ‘Tachycardia.’ M’s pulse was around 150, very dangerous, and required medication. Common after this type of surgery.

--Elevated blood sugar. Dangerous and required medication, injections in her stomach. Common after this surgery.

--Lung problems. Requires hard work on the spirometer, for lung exercises. Common after this surgery.

HOME:

--Flushing feeding tube.

--Loading, maintaining feeding pump. This device weighs about 20 pounds and will not roll on carpet so it has to be carried to the bathroom, etc. I used a 20 foot extension cord, plugged it in, and carried it for M. We tried feeding her at night, during the day, in between. It’s a pain in the rear regardless and can only be tolerated. I tried to get 2-3 cans of formula into her each day---about 400-600 calories. It took about 12 hours to get this much into her. The sweet little dietician at the hospital gave us a diet to follow when we got home. It was worthless. The thoracic surgeon, a man who trained at the Mayo, taken part in many trials for EC and has written numerous papers on EC, said, “Eat whatever you can eat. What’s healthy for a heart attack victim isn’t healthy for an EC patient. EC patients need calorie dense foods with lots of protein.”

He told us M should eat anything that appealed to her. If it made her sick, don’t eat it again for a few weeks and then try it again. For several weeks after her surgery, she couldn’t eat anything without getting sick. A spoonful of peanut butter was the first real food she ate. Then some cheese after a time. Then cereal with soy milk after a time. A KFC chicken breast was her first true meal and this was probably 6 weeks post-op. She ate almost half of it, sitting at a picnic table at the lake. I was so proud of her.

Today, March 7, 2013, M is 3-plus years post-op. She has returned to teaching and has missed only one day in 3 years.  She lives a busy, full life and is an inspiration to everyone who knows her...family, friends, coworkers, students. She is a true success story.

Vaughn, caregiver to Melinda

DX October 2009:  T3N1M0

November and December 2009:  chemo (Cisplatin and 5 FU) and radiation

February 2010:  Ivor Lewis surgery

My husband's surgery is scheduled for March 22nd. We have both quietly wished for an alternative to surgery. Bottom line for this beast is...surgery. Tonight we went to the University of Michigan Esophagectomy Support Group. It was amazing. Everyone was so informative and answered all of our questions. It was really nice. We met a 21 yr survivor, a 2 year, 5 year, all the way down to 3 months. The biggest problem seems the same for most. What to eat and how much to eat. It seems to be a learning process. I would suggest to check and see if your hospital has such a group. If not suggest they form one. It really helped us alot. Good luck to you.

Robin, 

I know exactly what you’re going through; I had my Ivor Lewis surgery a year ago. It’s a major surgery, but at your age, you shouldn’t have any problem making a full recovery. I was in the hospital for 10 days and the only major problem I had was a bout with atrial fibrillation on day 3. My heart rate was between 160 and 220 for over 2 hours. It’s common for the heart to act up during this surgery because they’re working in the area around it, but the heart usually settles down quickly. Mine didn’t. Other than that, I didn’t have any major problems. I had my swallow test on day 4 and had the NG tube removed on day 5. I was also able to have ice chips and water after my swallow test. From there I progressed to liquids and soft foods. I had 2 chest tubes and lost them on days 8 and 9. I had a feeding tube (J tube) for 5 weeks after I was released from the hospital, but I never needed it for supplemental nutrition. The doctor wanted to keep it in place just in case I would need it. 

I went back to work at a desk job 2 months after my surgery. I had chemo and radiation prior to my surgery and because my surgery pathology reports came back clean, it was decided I didn’t need any post-surgery chemo. It is a long recovery, but I feel great now. I can eat just about anything I want to eat; I just have to avoid spicy and acidic foods. Also, I have to eat smaller portions. My only real major lifestyle change is I have to sleep with my chest and head elevated. I bought an adjustable bed and haven’t had any problems with acid reflux.  

I found it very beneficial to talk to other survivors before I had my surgery. If you want to ask me any more questions, please feel free to message me and I will give you my contact information. You’re 20 years younger than me, so you should have no problem bouncing back after your surgery. Good luck! 

Steve Wendt

DX 11/2011 (T2N1M0 Stage IIB), Chemo and Radiation 11/2011 – 1/2012, Ivor Lewis Surgery 3/13/2012

I am 3.5 yrs from chemo radiation and THE surgery. i was diagnosed at 47 yrs old. you will do fine with the surgry. i was a stage 2B.  i am doing very well.  i had complications after my surgery but  i was still back to work exactly 2 months from getting out of the hospital.  i highly recomend having the surgery.  it is the only way to be sure this cancer will be gone.  i am a mother of three and when i got home my husband was my nurse.   good luck!