4/4/2001 Hi, everyone. This is Eric's loving wife, Candace. I will be keeping you posted on his surgical and post surgical progress shortly. You will be hearing the REAL story from me (not Eric's optimistic view). He is getting peach fuzz as his hair starts growing in again. And he appears to be recovering from the battering of chemo and radiation fairly well. Hopefully surgery will go smoothly. We are getting a bit apprehensive. More later. ......Candace
Ok, wife wanted a pre-operative photograph of me... so here it is:
The peach fuzz on my head doesn't show up very well, but there is hair growing there! Just hope I look this good when I get out of the hospital.
Had the pre-operative assessment at the hospital yesterday. They took some blood (doesn't everyone these days?!?) and did an EKG. Looks like I have a chance of surviving the surgery which, I guess, is good news. Also met with the anesthesiologist (not the one who will be sending me off to bide-a-wee land, but one of the group) and he explained pain control and other aspects of what they would be doing. Candace's mom is arriving this evening to give Candace some support. As for me, I think I'll sleep through the whole thing.
This is Candace. I won't be sleeping through the whole thing. For never having had surgery before, Eric is sure starting out with a big one. I've cleared my schedule to be available for whatever happens. I also have arranged for some support during this time. Hopefully it will all be smooth sailing. The trip to the hospital even for pre-op made me a bit anxious. Hope I can get his there OK for surgery. Seems a bit overwhelming.
Eric had his surgery today. Neither of us slept very well last night. He was scheduled as first case Monday morning. He joked and laughed all the way to the hospital. Certainly makes more sense than chewing his fingernails. Pre-op prep included an IV, an epidural (for post op pain management) and an arterial line. At this point, his usual good humor gave 'way to anxiety. Fortunately everyone in the pre-op area seems to carry Versed in their pockets. After an IV dose, Eric felt much more relaxed and ready to be a part of whatever was happening. They wheeled him off to the OR around 7:30am where we lost contact for the next nine and one half hours. His general surgeon, Dr. Burns, came out around 1pm. He let us know that he had completed his part of the operation. Eric's stomach had been dissected free with its blood supply intact. He had even made sure the surgical margins were clear of tumor and pushed the upper end into Eric's chest. Dr. Burns assured us that Eric was doing just fine.
Now, Dr. Moore got started on the chest. As the afternoon progressed, I could only imagine what was happening behind the door leading off toward surgery. I knew that Eric would have an incision made in the right side of his chest. From this incision, Dr. Moore would be removing the esophagus and all lymph nodes. He would attach the stomach to the esophageal stump. A chest tube would be left in place to drain his right chest.
Finally, Dr. Moore came out around 5pm. It was awfully good to see him coming our way. He said that Eric was doing fine. What was found at surgery was an ulcer at the gastroesophageal junction as probable residual from his tumor. We will all be awaiting the pathology reports that will be available in three days to find out what was left of the cancer and whether there were any positive lymph nodes. One can only hope that the surgery removed everything completely.
Being a doctor (and, therefore, unlikely to pass out in the recovery room) I was allowed to see him in recovery. In recovery, Eric looked like post op patients do, connected to everything and wired for sound. He was as comfortable as a human being can be having had his plumbing reworked. The epidural placed before surgery should help him deal with the pain from his two incisions and multiple tubes. He was later moved to the ICU where he will be spending the next day or two. It's going to be a long night for him, but he managed a small joke with the ICU nurses, so he still has his light spirit and positive attitude. Candace
Eric is in the ICU today. He had a bad night last night---no sleep and some very attentive nurses checking him all night long. He is struggling a lot with pain but getting some relief with his epidural---just not as much as he would like. When I arrived this morning, Dr. Yaffe was making his ICU rounds and stopped in to see Eric. Eric's chart gave the total surgery time as 8 and one half hours. That is a long time to be on the OR table. Eric said that Dr. Moore had been by earlier in the morning with the great good news that he feels that he got all of the tumor. While we won't know for sure for awhile, the news really lifted my spirits.
During the course of my visit, the nurse told us she planned to change his dressings then get him up to walk. Neither of us could quite belief she would be able to pull this off. Based on the way he was feeling, Eric certainly didn't believe that he was capable of sitting much less standing. I didn't believe it was possible from a purely mechanical perspective. He is connected to an NG tube (in his nose), two chest tubes, a Foley catheter (in his bladder), an epidural catheter, two IV's and an arterial line not to mention the wires to his monitor. He had four bottles of various fluids hanging and, well, it just didn't look he could reach up and scratch his nose, let alone stand without pulling something out. But stand, he did, briefly. He claims that he felt much better for it. Wish I had been able to see that. By my afternoon visit, he was resting much more comfortably. He dozed quite a bit during my visit. The occasional snore was good to hear.
I learned that during surgery, his vagus nerve was removed so his heart rate is faster than normal (the vagus nerve slows the heart rate among other things) so he is receiving digoxin (a heart drug) to help his heart. In addition, his kidneys are getting a little extra help to do their job with a diuretic (a water pill) and some IV dopamine (to increase the blood flow to the kidneys).Getting him through his post op course is a very complicated business. His evening plans included another stand by the side of the bed and more respiratory therapy. He isn't out of the woods yet, but he looks a little better today. Hopefully he will rest better tonight than he did last night. Candace
Day two post op. Eric is still in the ICU. Last night he found sitting in a chair much more comfortable than lying in bed. Sitting gets him off his chest incision. He was tired this morning. It had been another long night of trying to get comfortable. An extra amount in his epidural and some Toradol got him feeling a bit better. Late in the afternoon he was again sitting in the chair and seemed much more comfortable. He smiled (weakly) and even joked a bit with the nurse. Sitting upright he is better able to breathe. He is learning to hate his incentive spirometer---a device he has to blow into every few hours to help keep his lungs well inflated. By the end of the day, though, the nurse had removed his arterial line. He was off oxygen (except for sleep).
He is more alert and may be moved out of the ICU soon. We are still waiting for the final path report. Preliminary findings suggest that only one node may have had tumor. Hope the final report is as encouraging that his cancer was confined and removed. I am pretty tired tonight. Cancer is a family disease. The whole family gets involved in the care and treatment. I sit by his bedside watching him struggle through recovery from surgery and try to figure out how to help him-----get a blanket, swab his mouth, all the little things. If only I could breathe for him, cough for him, or drink a glass of ice water for him to help wet his dry mouth. Every day he has made a little progress. Candace
Day three post-op. Eric was exhausted when I arrived this morning. Sleeping in a chair is much more comfortable as he feels best upright. However, trying to get comfortable in the chair available in the ICU left him trying to sleep bolt upright. The ICU bed had a typical hospital mattress----like a board. Fortunately the anesthesiologist managing his pain control, Dr. Davis, stepped in during my visit. After a brief discussion, he asked the nurse to order an egg crate for him. It's a foam pad that looks like the inside of a large egg carton. He was also ordered IV Ativan (to help him relax). However, he received some IV Benadryl for itching just before being helped back to bed. Within a few minutes of lying on the egg crate with some IV Benadryl, Eric was sawing logs with the best of them. He roused briefly about five hours later then drifted off again to get some much needed sleep.
Tonight he has been moved to a step down unit (halfway between ICU care and regular hospital care). He is irritable today. His comment today was that his tour of duty in Vietnam was a walk in the park by comparison with what he is going through now. The good news is that his pathology report came back today. Removed at surgery was 7 cm of esophagus and the top part of his stomach with nearby lymph nodes. In that specimen there was a small spot of tumor in his distal esophagus but not through the wall of his esophagus and all nodes were negative for tumor.
Chemo and radiation worked well for the bulky tumor he started with. Now surgery had removed the rest. We are both very tired tonight. I've watched him sleep, patted his knee, swabbed his mouth, propped with pillows and generally tried to figure out how to be helpful, but I'm not a nurse. And he is trying to figure out five minutes at a time what he needs to be comfortable. He is tired of all of these damned tubes and just generally wore out. We both need rest. Tomorrow is a new day. Candace
Post op day 4: Eric got some rest last night sleeping for a much needed 5 hour stretch. He looked more alert this morning. Unfortunately, his epidural catheter had wiggled its way out and was removed altogether. He was switched to a PCA pump (patient controlled pain medicine) attached to his IV. The pain medicine he is receiving makes him pretty groggy. Anesthesia offered to put in another epidural if needed but Eric doesn't want that. He sees it as taking a step backward as if the IV medicine is a step forward. It is impossible to argue with his fuzzy mind. He was joking tonight about pushing the button on his PCA pump so many times (for pain relief) that the pump reached out and slapped his hand.
Dr. Moore, his cardiothoracic surgeon, ordered a barium swallow this morning. Unfortunately, he has a small leak at the suture line in his esophagus so no clear liquids by mouth until it heals. Instead, he is to start feedings through the jejunostomy tube placed at the time of surgery. It goes through his belly and into his intestines bypassing the area of surgery. Eric said that he is getting "something blue" tonight (blueberry cheesecake?---one could only wish).
Dr. Burns was in today to exam the abdominal incision. The incision extends from just below his breast bone to just below his belly button. Makes me nervous about seeing his chest incision as I suspect that it may be even bigger. His comment this morning was "How can getting well (cured of cancer) make me feel so sick?" Watching him I am convinced that cancer therapy is not for wimps. I wonder how people with other diseases like heart disease or emphysema find the courage to even attempt it. I suspect that he will get some sleep tonight. Candace
Post op day 5. Eric did get some sleep last night --4 or 5 hours. Not bad actually as he is uncomfortable most of the time. The nurse came in this morning with a bag of green liquid announcing "Steak and eggs for breakfast" (I know that it is really green eggs and ham). He has begun receiving feedings through his jejunostomy tube. With his gut just starting to work again, his belly is most uncomfortable. This too shall pass, but until it does it seems to be one more thing to deal with. Otherwise it was another post op day of trying to sit up for comfort until he is worn out then lying in bed trying to get comfortable to sleep. He is always bothered by the multitude of tubes connected to him and always trying to find a comfortable spot. The narcotics keep him just barely comfortable but very fuzzy. He catches bits and pieces of conversation, fading in and out. He is irritable often. The nurses see his humor and his irritability as part of his efforts to handle his current situation. They like his feisty attitude as a sign that he is determined to deal with the pain and incapacity. Guess it is better than being a lump in bed. Candace
4/15/2001 Post op day 6. Easter Sunday. The day started out with color---green color on the bed sheets. The J tube feedings had been leaking out. The big question was whether the tube feedings were just leaking on the bed or in Eric's belly too. Eric took a trip down to radiology for a dye study to see where the J tube catheter was placed. Lying on the x ray table (those nice hard, cold tables) was excruciating. The up shot of inspection by the surgeon on call was that the catheter was out and he took it out. The catheter had become kinked and slid out of place. So much for J tube feedings. The next step was to start Hyper alimentation---a 50 cent word for IV feedings of high energy stuff. Unfortunately the IV nurse was unable to start a special line for this, so Eric will return to the radiology department tomorrow (and presumably that same hard table) to have one placed using fluoroscopy to see where it is. He looks a little better and a little brighter today. Candace
4/16/2001 Post op day 7. We saw the first signs of recovery today. At least, it was the first signs to an untrained eye. I know that the doctors have been measuring recovery in return of bowel sounds, stable vital signs, good urine output and all of those doctor things. Eric was sleeping flat on his back in bed when we came in this morning. Doesn't sound like much but it was a big thing. His chest incision had finally healed well enough that he was comfortable lying on it. He got a PIC line placed this morning (it's a special IV line that goes into an arm vein and the tubing is fed into that vein all the way up to near his heart). He started getting IV feedings to help him heal. In the afternoon, the nurse helped him walk all the way down the hall and back. It's no marathon but a significant feat one week after major surgery. Eric was able to get more comfortable today resting better. He is threatening to sneak out of the hospital and head home as if a man in a hospital gown, tubes flapping in the breeze, walking down the side of the road would not get noticed. Even here in Atlanta, that would create a stir. Candace
4/17/2001 Post op day 8. Progress is measured in small improvements today. Physical therapy comes to take Eric for another walk down the hall----a feat requiring two poles to hang all of the tubes and bags from. It also requires two people to help and a walker for support. Still it's a walk down the hall . On the one step back side, one of the two tubes of his PIC line clotted today. He could receive IV feedings but not pain medicine. The IV nurse has some tricks for opening that up tonight. Until she has the right opportunity to work on it, she starts another IV for pain meds. Eric even shaved today for the first time since surgery. It was a pretty fair job for soon after surgery. It is quite remarkable to me that he could undergo an 8 and one half hour surgery on both chest and abdomen 8 days ago and walk down the hall today. The healing of the human body seems like a miracle to me. Candace
Post op day 9. The news is all good today. On the tube count, Eric is minus yet one more. His foley catheter has been removed allowing him to pee on his own. He is wearing pajamas today and looking more like his old self again. The physical therapy people came in the afternoon to take him for a walk down the hall and back up. He is even goofing around with the physical therapist pretending to get weak in the knees as if he would fall. Humor is a tremendous asset for healing. It has helped Eric to not take the small sufferings too seriously. Tonight's nurse, Trish, has a delightful sense of humor. She is wonderful for helping him to relax and smile a bit. Tomorrow Eric will have a gastrograffin swallow study. Gastrograffin shows up on x ray but doesn't hurt him if there is a leak . It will show whether he still has a leak in his new esophagus. Dr. Moore is pretty sure that the leak that was present last week has healed. If it has healed, Eric may be having clear liquids starting tomorrow. We are hopeful that he may be coming home soon. He has become quite tired of hospital beds, tubes, vital signs and all the hospital routines. I am becoming tired of the drive to Northside Hospital twice a day. I'd rather walk from the kitchen to the bedroom to sit with him for a bit and hold his hand while he dozes. Candace
Post op day 10. Once again it has been a day of good news. The gastrograffin study left some doubt about whether the leak remained. However, a CT scan done immediately afterwards did not show any leak. The trip to radiology and the procedures wore Eric out. He tires quite easily. In the late afternoon, the NG tube which drains his stomach was removed. Shortly afterward, the chest tubes were removed. Eric has his first "dinner" through his new esophagus ---- jello and bouillon. Now he will move on to a full liquid diet to see how he does with that. He is still getting calories thru his PIC line as he learns to try out his new plumbing. We took a walk around the hospital corridors with only an IV pole and a walker. Eric is tired tonight. Its been a day of progress in leaps and bounds. We both have hope that he will be coming home soon. Candace
4/20/2001 Post op day 11 The day began with the breakfast of post op patients---barium. Eric returned to radiology this morning for another barium swallow that showed clearly that the new esophagus was not leaking. Back in his room, he was given his first full liquids---Ensure. This was followed very shortly by a lunch tray of "something white" which Eric was too full to eat. The physical therapist walked him around the halls in the morning. In the afternoon, he walked the halls with the therapist and then had the final test from the PT dept---the stairs. He walked down then up about a dozen steps arriving at the top breathless and tired. Having shown that he could climb stairs, he was graduated from PT. Late this afternoon, Dr. Moore came by to let Eric know that he would be discharged on Saturday, 4/21. He had roast beef and potatoes for dinner eating only a little. He has a smaller stomach. I look forward to having him home tomorrow. Dr. Moore did an excellent job. Now it's my turn to help him learn to eat again and to regain his strength. And we will both be holding our breath on each future CT scan hoping the cancer is gone. Candace
Post op day 12 Homecoming. Eric is discharged from the hospital. Northside, like most hospitals is not a place of rest. There are all manner of medical people coming in all hours of the day and night. In addition there are the usual hospital noises---overhead pages, IV pumps beeping, people talking in the hallway etc. At home in his own bed, Eric managed a 4 hour nap. We are now exploring the feeding. I am glad to get him home. However, I think that my job is just beginning. Candace
Post op day 14. Two weeks after surgery. Recuperation is going to take awhile. Eric gets around the house slowly but on his own steam. He is experimenting with eating with his new esophagus and new, smaller stomach. Small amounts fill him up very fast. He is on a regular diet, but small amounts. He doesn't have much of an appetite. Eating is more of an exercise and a necessity. He is still "sore" a lot and using his pain medication regularly. This is when that PCA pump of pain killers right into his veins sounds good to him. The furniture at home is softer and more comfortable than hospital furniture but everything seems to become uncomfortable after awhile. I watch every little bit of progress he makes wishing to have my healthy husband back again. Candace
Post op day 16. Eric spends much of his time resting and dozing. He is very tired and weak. He tried a short walk down the street today, made it about 200 feet and was winded. He says that the pain makes him short of breath. Learning to eat again is a chore. His appetite is absent. We remind him to eat periodically and make him high calorie milk shakes that he toys with. He looks thin especially when he is dressed and his clothes hang on him. I cheer on any progress. I try to hang onto my faith that he can master living with his new stomach but it's hard to stand by and just watch. Candace
Post op day 19 The post op course is slow. Yesterday afternoon, Eric was complaining of more chest pain and shortness of breath. With a little urging on my part (about as gentle and subtle as an oncoming freight train), he called Dr. Moore's office. We both needed to know if this was normal post op pain or he was suffering some complication (as a doctor, I can think of many possibilities). It was good to hear Dr. Moore's nurse practitioner, Mickie, on the phone. The news was both good and bad. She said that the pain was normal (the good news) and that it could last for as long as three months (the bad news). Her assessment was that Eric was about where he was supposed to be in his recovery. Eric has lost more weight since surgery being now about 15 lbs below his pre surgery weight. Prior to surgery, Eric ate once very large meal a day. He was blessed with an iron stomach that never gave him a moments trouble. It is very depressing for him to go from eating anything and everything sometimes in large quantities to finding discomfort with everything he eats. One of life's great pleasures for him has become one of his least favorite chores. He is depressed by this. I am concerned about his mental state. It is going to take some energy and determination on his part to return to some state of health and he doesn't seem to have much determination right now. I work on my own unrealistic expectations and try to settle in for the long haul. Candace