He is "resting" in a deeply sedated mode. Unfortunately due to the nature of this type of sedation and the fact that he is hooked to a ventilator with a tube down his throat, they have had to restrain him. This keeps him from accidentally knocking the tube or wires loose while he sleeps. Additionally, it helps prevent him from pulling the tube out if he were in a greater state of consciousness. Its disturbing to see.


The doctors learned from the CT Scan that Roger still had fluid in the right side of his chest. Unfortunately the location of the fluid was such that the existing chest drainage tube did not "reach" these fluids. So, the surgeon had to do a procedure whereby he inserted a second chest tube into Roger to drain the additional fluids. Once inserted, the tube drained a considerable amount of fluids from Roger's chest. Shortly after this happened his fever spiked again. The doctors think its because as the fluids were being drained it stirred up the remaining bile in his chest cavity. They are working to bring the fever down with the use of Tylenol, cold compresses, and the antibiotics.

He will remain on the ventilator tomorrow and most likely the next day. The doctors will continue to give Roger high powered antibiotics and flush his system. They will continue to do xrays on him to monitor the progress he is making.

More tomorrow ~ a

The hospital is not a quiet place

I thought about this last night as I was driving home from seeing Roger and checking in with the night nurse, the hospital is NOT a quiet place. There is at minimum a constant hum of the HVAC units pumping really dry air throughout the hospital, then layer on the sounds of the machines and monitors in the patient's room, then layer on top of that the constant buzz of nurses and doctors in and around the area, and finally layer on the very top the sounds of patients' family members. This past week, Roger used ear plugs to try to drown out all the noise.



We have a fabulous nurse on the day shift today, Holly. She was the first nurse we worked with immediately after the surgery a week ago...its deja vu. She is attentive, proactive, personable, detailed, and warm. She stops and talks to me to make sure that I understand what is going on. She proactively realized that Roger's pain meds still weren't keeping him pain free, and she went to the doctors on her own to see what could be done. She has been putting cold wash cloths on his forehead to give him some comfort from the fever. As of this writing, his fever is down to 99. It danced around between 100-101 all night. I know those seem like little things or maybe even things that a nurse should do as part of the job....I can tell you that is NOT the case with every nurse. So, I try to fill the gap with the small details that might be missed and I try to work with the good nurses to see if they can get the next "good" nurse on the next shift to care for Roger.



A pulmonary doctor and ICU doctor checked in on Roger this morning. They indicated that he would stay on the ventilator through the day and over night. Tomorrow we'll see where he is as far as the fluids in his chest and the after affect of the stomach acid in his chest cavity.



They did a CT scan this morning to check the fluid in Roger's chest and to look at the surrounding area. I anticipate that I'll hear from Dr. Aschiotti (Dr. Freeman's partner) today as well as our oncologist, Dr. Birhiray (who was here around 8 this morning) regarding the test results. Until then, we'll have to wait and see.



As I waited for the nurse to call me to let me know that they had brought Roger back to the room after the CT Scan, I had time to look around the waiting room. I decided to wait there since you can't use cell phones in the ICU area. There was every walk of life - all ripe with emotion. Raw emotion. The room had a strange mixture of nervous laughter and joking, silent tears and soft sobbing, analytical discussions, and quiet blank stares. It almost felt like a large emotional whirlpool that could easily suck you in and sweep you away. I had an odd realization as I was sitting there... I was purposely avoiding eye contact and avoiding the opportunity for conversation. It was so strange! This is completely the opposite of how I was when we were at the oncology center - Roger and I both talked to EVERYONE and learned as many stories about people as we could. In the past, I would want to ease the pain of others or at least try to engage them in conversation that might distract them from the pain. Today, I just couldn't do that.



I'll post again tonight after I know where we are.

I have searched all day for the words that I would use in the blog tonight. I can't say that I've found the right ones...So, I'll just share with you what I know.

We have had a rough 24 hours.

Yesterday afternoon Roger started having shortness of breath, coupled with paralyzing pain. I had left the hospital for a couple hours while his sister Denise visited with Roger. She called me at 4:00 to tell me that he been experiencing these issues for the prior hour and now the nurses/doctor were getting ready to take Roger off the floor for xrays to determine what was causing the problems. I arrived at his room to see a flurry of nurses, techs, etc all circling Roger. He was lying in bed, nearly frozen with pain. Almost as if in sync with each heart beat or each breath, Roger would seize in a spasm of pain. No amount of pain killers seemed to be able to lessen the pain or increase his ability to breathe. Shortly after the pain started, the nurses noticed that Roger's chest drainage tube was now draining a dark green-ish substance....it usually drains either a bloody colored fluid or a clear fluid from the chest cavity post surgery. Immediately the tentative prognosis was that Roger had developed a leak somewhere in the gastro intestinal track causing stomach bile to leak into the chest cavity.

Apparently stomach bile....stomach acid....is pretty nasty stuff and has a corrosive, burning effect on tissues...especially the lungs. Roger's pain was due to the inflammation and infection from the bile.

Roger was put through a series of tests/xrays to see if they could identify where the leakage was located. Unfortunately NONE of the tests revealed where the leak was. So, the doctors decided they wanted to stabilize Roger for the night. He was moved to ICU. Mega anti-biotics and painkillers were given to Roger. The hope was that his body might fix the leak on its own (which is normal for the body) and then Roger could be treated for the infection. Unfortunately, come morning Roger's system was still draining bile out of his chest cavity. So the doctors decided to take him into surgery for an endoscopy to determine where the leak was from the inside out. They found it. Apparently Roger's esophageal tissue and stomach were weakened from the radiation (not atypical for the treatment)...as a result, when the surgeon sutured the radiated tissue it could not hold the stitch....so a leak was formed. Dr. Freeman told us that 50% of the patients going through this surgery will experience a leak. So this isn't a complete surprise.

Dr. Freeman was able to suction out the bile and then inserted a stent (spelling??) into Roger's esophagus in the area where the leak was. The stent will "seal" the leak until the body has a chance to do it itself.

Fast forward, Roger is now back in ICU. He is heavily sedated and is on a respirator...the machine does the breathing, does the work for Roger. Dr. Freeman wanted to give Roger's body a chance to rest and recover with as little pain as possible. He still has a slight fever from the infection but they are attacking the infection with mega antibiotics. He still experiences pain but at an unconscious level.

So for the first time in a week, I am going to sleep at home. There isn't anything I can do tonight. He is so sedated that he is basically unconscious. No amount of massages will get through to him tonight. He just needs to rest and recover. It kills me to not be with him.

that's all I have. I'll update you tomorrow. Send all your positive thoughts and prayers to Roger.

~angie

A big day

Roger slept more last night than he has in the past - however, when he was awake he was fitful and agitated. Kinda made you a little nervous for what the day had in store for him.

The first visit of the day (at 7:30 am!) was Dr. Birhiray, the oncologist. His timing was perfect because Roger's disposition was pretty foul due to pain and discomfort. Dr. B ordered a "turbo boost" of pain killer to help reduce his pain and frustration. It made a huge difference and took the edge off.

There were multiple other visits from surgical nurses, pain doctors/nurses, and the best visit of the day was from the surgeon, Dr. Freeman. He told us: 1) the epidural and catheter are coming out today, 2) the naso/gastric tube is coming out of Roger's nose tomorrow, and 3) most importantly, the tissue that was removed including the esophagus and the lymph nodes all came back clean of cancer (pathology reports were received) - this is really great news because it suggests that we are as close to "cure" as we can get. Apparently the surgeon and oncologist use the test results of these biopsies as a large measure of cancer treatment "success". Some patients have biopsies that still come back positive for cancer after chemo/radiation which means the patient could be susceptible to cancer coming back in the remaining tissue area post surgery...its thought that the patient's system is resistant to chemo/radiation. So the best news the surgeon and oncologist can hear is that the tissue tested negative for cancer. Roger's lymph nodes and esophagus tissue that were removed (all formerly tested positive for cancer) were clean!

Around 10:30 this morning, the doctors removed Roger's epidural. The procedure itself was painless. The balance of the day has proven to be a little more challenging as the doctors and nurses worked to find the right combination of pain killers. We think they have found the right formula. He has a pain patch, a high-power anti-inflammatory, and a morphine "button" which Roger pushes as he needs it. He's relatively comfortable (the pain is "mild") initially, as the dosage wears off, you can quickly see the pain reflected in his knitted brow and failing disposition. The surgical nurse said that day 3-4-5 post surgery can be the worse...we're smack dab in the middle.

The removal of the epidural started the clock for the removal of the bladder catheter. The catheter was removed around 5:00 this evening. So, that's two less tubes/wires for Roger to dance with. He's happy to have them gone due to sheer comfort and I'm happy to have them gone so that I have a few less things/tubes/wires to watch for when giving a massage or sponge bath. This will be way more information than many of you really want....after having a catheter removed, a patient must urinate within 6-8 hours OR the horrible catheter will be put back in while the patient is awake. NOT a pleasant thought for anyone....happily, Roger met that goal. Again, more info than you probably wanted, but a real part of our journey and its a huge milestone!


I've heard from many of you that I need to make sure that I'm taking care of myself. I understand and hear you all. I'm getting sleep - I promise. And I'm eating - I promise. I enjoy being with him and am able to anticipate his needs, so being here isn't a burden.

More than anyone, I know that we are only half way through this marathon....so I'm saving enough energy to make it the "last 13 miles". I may be a little rough around the edges by the end of the race but it will be completely worth it. Honestly, who isn't a little rough around the edges after a marathon?

I'd never wish this experience on anyone, but have to tell you there are a few positive things which you can take away from this..... 1) you meet a lot of wonderful people in the caregiving community, 2) the experience reminds how much you love the people around you (especially my hubby in my case), and 3) finally, this experience reminds you that you can do virtually anything... the human spirit can endure some pretty horrible stuff and prevail.


~Angie

We finally made it to a private room yesterday around noon. The second floor surgical recovery area is obviously much less intense than...go figure...Intensive Care. The last night in Intensive Care proved to be overwhelming~ we couldn't get out of there fast enough. The night nurse, Diana, was a bit of a steam roller. So far, she is the only nurse we've had two days in a row. She was certainly sweet enough but was pretty rough, man-handling, with her patients. Kinda a bull in the china shop. Anyway, I had slipped away to grab a couple hours sleep only to return around 3:30 to find the lights all on in Roger's room with Roger standing/huddled next to his bed while Diana frantically tore apart Roger's bed...apparently she had just lost the keys to the narcotics cabinets/machines at 3:00 am. Now, having had my own moments of losing stuff (especially recently) I can certainly relate and empathize with her on how frantic you feel when you lose something. ...but to turn Roger's room upside down and him with it at 3:30 in the morning was unearthing to say the least. We were THRILLED to see the transport person when he came to move us to the new room.

There are fewer nurse visits on this floor which has been a good thing. Our first nurse, Sue, ranks as one of the best we've had since the surgery. She was thorough, friendly, kind, and very "present". She didn't hesitate to learn a little about us while sharing a little about herself. She was the best way we could have been greeted to the new floor of care. Caregivers can make all the difference.

I now have a cot in the room with Roger which means I don't have to sleep in the waiting room areas anymore. We find that I can be more immediately responsive than the nurses for the little stuff like helping him reposition in bed, massaging out a cramp or charlie horse, pulling covers up or down, finding his sucking tube (devise to get the goo out...hows that for technical terminology?), adjusting pillows, etc. Plus, for me...I just like being near him. :-). The room is becoming cozy with flowers, and two little Christmas trees (thank you Nicole and Lisa). Though still a hospital room...its a little more festive. The attached pictures are Roger putting lights and decorations on the little spruce.

Tentative schedule here in the hospital is a total hospital stay of 7-10 days:

• Tomorrow, Friday 12/18, the doctors are expected to take out the epideral which has been blocking a good portion of the pain for Roger. Approximately 6 hours later, the bladder catheter is expected to be removed. Pain meds will be administered via feeding tube or IV. Apparently, they delay in the removal of the catheter is because the bladder and bowels are slow to wake up from the epideral fog.



• Monday 12/21, the surgeon will remove the naso/gastric tube (the one that sticks out of his nose and drains fluids from going down his throat/esophagus/stomach). That same day, they will conduct a swallow test/x-ray on Roger to see if there is any leakage from the areas where the surgeon stitched Roger back together. If the swallow test goes well, then he'll be able to try drinking clear fluids.



• Anticipated (hoped for) hospital discharge date somewhere between 12/22-12/24.

I have to ask a huge favor of everyone out there - friends and family alike....we know that many of you would like to come to the hospital to see Roger and show your support. As difficult as this might be to understand, the visits are really hard on Roger. As it is, he has a hard time getting sufficient sleep due to the constant visits by the nursing staff and the constant pain he is feeling. When someone comes to see Roger, he feels like he needs to "entertain" or chat it up with the guest....which means that he's not resting. He is embarrassed (whether or not you are family or friends) by having to drain different goo and stuff out of his system. It all adds stress. When the nurses come in to take Roger's vitals after a visit, his blood pressure is always up. So, the favor. We'd like to limit all future visits to the hospital until the first of next week. If you insist on visiting, then we ask that you limit the visit to 15-30 minutes. Once we get Roger home, and he is off all of the tubes and devices, then he will be up for visitors more often. Roger has been worried about asking any of you to refrain from visiting because he's afraid he's going to hurt someone's feelings. I'm hoping that no one takes offense to our honesty....more importantly that no one takes offense to our attempts to get Roger healthy as quickly as possible. As soon as Roger is ready to receive guests again, we'll let everyone know. As of this evening, his voice is starting to fade due to the combo of lots of talking with the naso/gastric tube down his throat. We will be getting Roger's phone back from his friend Paul (who has been babysitting the phone for Roger). When we get it back, you are more than welcome to call or text Roger. If he is up for talking/texting, then he'll respond. If he's not at that moment, then he'll respond a little later when he's up to it. Again, I hope that you all understand EVERYTHING we are doing at this point is to get Roger through this and back to his healthy, albeit somewhat obnoxious self.

I'll have more "roger moments" moments to share with you tomorrow. Last night and today were a little long for both of us - and filled with a lot more aggravation than either of us need.

Big hugs and kisses to all of you. R & A

A new day

I come to you later in the evening similar to last night. I'm sitting in Roger's ICU room next to his bed, its 9:45. Its been another long day ~ but a good day in light of where we are. We - more importantly ROGER - has come a long way. At the risk of boring you with detail, here is where we've been: When I left Roger last night to grab a couple hours sleep in one of the waiting rooms, he was dozing on and off. In ICU, the nurse-to-patient ratio is approximately 1-1. Nurses are in the room at minimum once an hour and really quite a bit more than that. Roger had loads of poking and prodding combined with a cacophony of machines wheezing, whirling, buzzing, and whistling. No matter how "quiet" it is, it actually is incredibly noisey.

After grabing a couple hours sleep in one of the waiting rooms, I came back up to Roger's room around 3:30. The night nurse was getting Roger ready to sit up in bed. It was a tense, painful process, but he ended up sitting upright approximately 12 hours after his surgery!! During the day today, the nurses had Roger up and out of bed, sitting up right in a chair TWICE for approimately 45 minutes each time. Again, he was in loads of pain and made good use of his pain "button" but he still managed to sit upright outside of the bed. This is important as it helps him take larger lung-fuls of air which helps keep liquids (pneumonia) out of his lungs. Throughout all the pain, Roger has been an absolute hero. He grimaces and winces with pain but still follows through with the activity/exercise.

Roger's color is beautiful - close to his normal rudy complexion. All other more technical indicators also appear to be good. The surgeon met with us twice today - once in the morning and again at the end of the day. He stated that Roger was doing very well. He geniuinly seemed pleased to see Roger sitting up right and to hear that Roger wanted to do a small walk around the floor.

The dressings came off of two of Roger's incisions - he has approximately a 7-8 inch incesion on his chest from breast bone downward and a second one that starts under his armpit and stretches around 8 inches arching across his back. He has a chest drainage tube to get all the fluids out of his chest, a naso/gastric tube to prevent any fluids from going down his throat to what remains of his esophagus towards the stomach, and then he has a feeding tube that will send nutrients to his small intestines directly. Its a whole lotta stuff - but having said that, his incisions look good (no inflamation, discoloration, etc) and thethe nurses/doctors have started unplugging Roger from some of the machines/etc.

The doctor surprised us with the announcement that Roger was doing so well that they wanted to move him from ICU to the "regular" surgery floor today. Sadly we got our hopes up only to find out at the end of the day that they were NOT going to move Roger because of logistics issues not related to Roger. So, we spend another quiet...not so quiet... night in ICU. The nurses will whiz in and out to check on him hourly. Hopefully his sheer exhaustion will allow him to sleep through it all. He has used his earplugs to drown out as much of the hallway noise and I have shut the door. I'll be leaving shortly to go find a quiet spot in one of the waiting areas on one of the floors to grab some sleep myself.

There were many - almost too many "Roger" moments today. Some entirely tooooooo inappropriate to share with you in writing. Those will need to be shared verbally.... however an early one in the day involved his feeding tube. The nurses came in to give Roger his first feeding - a horrible baby-poop brownish looking liquid. They tried to access his feeding tube only to find out that the surgery team used some sort of feeding tube connector that they were not familar with. The nurses brought in other nurses, and nursing supervisors, and doctor residents, etc all to see if they knew what connector to use with this feeding tube to administer the food substance properly. Roger quietly sat through many of these conversations and finally interjected to our primary nurse Josh, "why don't you go to Lowes Hardward for the fitting. They probably have it in the plumbing isle." Josh laughed and walked away. Later today, still no fitting in place, another nurse came in with Josh to try a fitting she had. As she was attaching the devise to the feeding tube she matteroffactly stated to Josh (and Roger)...."Lowes was out of this - I got this fitting at Home Depot" Apparently the word is out on the floor among all the nurses about our dear Roger.

Its hard not to be enthusiastic for the small moments of what appear to be progress - good color, mobilility, pleasant disposition, etc. We know that we're not "out of the woods" yet but it feels pretty wonderful from where I'm sitting.

The first two photos are from yesterday the surgery day. The first one - the smallest - shows Roger holding his painkiller magic button. The second one is his "thumbs up". The following two pictures are from today when Roger was upright in a chair.

Good night to all ~ Angie

Monday monday

The day started at 5:00 a.m. as we bustled (ok, I bustled....Roger lumbered) around the house to leave and get to the hospital for a 6:00 a.m. check-in. Roger was whisked away to get "ready" before I we had much time to settle into the waiting area. He was gone for 30-40 minutes in which they ran tests, took blood and prepped him for surgery.

We were finally invited back to visit with him in his fine hospital gown only to have him whisked away 5 minutes later. I gotta tell you, I felt a tiny - no big - piece of my heart whisked away with him and found the breath stolen from my lungs. I wanted to shout, "no wait, we - I - need a few more minutes with him. But reason prevailed and I kept my mouth shut while a quiet tear or two slipped out of my eyes.

We were 11-12 in number on and off throughout the day. After collecting ourselves, we moved to the surgical waiting area for many too many hours of wait. No amount of TV, trashy magazines, playing solitaire, doing email, or simply staring into space could remove the tension or make any of use rest at ease. We had only been in the waiting area for a short period when we were um..... greeted.....(not really what I call a greeting) by the official Welcome Wagon of surgical patients, the hospital chaplain Sister Mary John who shall be fondly known from this moment forward as either Sister Mary Adolf Hitler, or Sister Mary Nazi. She was a short stout woman (and I can say that because I'm short and stout) with an exceptionally deep voice and a distinct opinion about everything related to this hospital. We later decided, once Sister Mary Adolf left, that she could be used as the model for a character on Saturday Night Live. If I got ONE lecture today, I had at least 2-3 more....Kinda felt like I was in college again at Xavier...I hate being scolded by a nun. I might have been inclined to call her a troll-like character but would not want to damn myself to hell for saying anything less than kind about a nun. So for the record, I am not calling her a troll.

Anyway, Sister Mary Nazi (SMN) barked several rules to us about where to sit, where to go, when to eat, where to eat, what not to eat in the waiting area, how late to stay, etc. She had quite a lasting impression on me as you can see. The sad part is that Roger did not get to experience SMN....I can only imagine what Roger-comments would have come out. :-)

The surgery was expected to last 6 hours or more. We received the call that he was out around 1:30 and that the procedure went really well. Everything looked great. He didn't experience any bleeding. The surgery only ended up taking 5 hours which by every one's account on the hospital staff, including Dr. Freeman, meant that the surgery went well and there were no complications. Upon hearing this, you feel a few of the hundred pounds lifted off your shoulders. Then came another wait until we were able to see him up on the ICU area.

Its all pretty surreal. You see this person lying in bed with hoses and tubes and monitors and machines all around him and you think "that's not my vivacious, lively husband" and yet you know it is somewhere in your mind. You really can't let yourself "go" for fear that the raw emotion hiding under the surface will suffocate you. When I saw him for the first time, I was rendered speechless for a moment. He suddenly seemed too frail to touch - so likely to break - yet all you wanted to do was lay hands on and make sure that he was real and alive.

He was in considerable pain this afternoon, as anyone would expect. However the pain was in his shoulder, shoulder blade and neck area. We suspect its because he had his arm up over his head as they worked on the right side of his body. Several adjustments of pain meds and anti-inflammatories, several adjustments of pillows and bed height, and several massages later and the pain seems to have decreased slightly. He's been able to sleep on and off through out the afternoon and evening.

Fast forward to now. Its past 1o:30 pm. The hospital has grown quiet. The crowds have left. The night nursing staff seems much quieter than the day nursing staff was. The traffic to the various patients' rooms has died down. Its finally quiet and I feel like I can almost think. I'm here in Roger's room sitting next to his bed. He was been awake with me for the last 15 minutes or so. There's not much conversation. A word or two here or there. An adjustment of the bed or his pillows but otherwise just peace and quiet. As I sit here in the dark and reflect on the day and look at Roger over the top of the laptop screen, I am reminded again (not that I ever forgot) how much I love him. We all need to remember how much we love our "person" and our "people".

Despite being drugged up and feeling terrible a couple little jokes still slipped out of him during the last nurse-visit and he managed to tease the nurses a little. The nurses have been checking his vitals, making sure his body is draining all fluids, and monitoring the pain. They have also been coming in to get him to do different breathing exercises. He is supposed to do these hourly when awake. I'm proud to say that he is doing these on his own without provocation by the nurses or me. It makes me smile. He wants to get well and get out of here. He's been bending his arms trying to get the "kinks" out and get the stiffness out and generally get the blood flowing. He's truly remarkable.

Ok - I may just have to take back all the nice thoughts I've had for him. This LITERALLY JUST happened: I just looked up at Roger and he was sucking in air and had his eyes bugged out. I practically threw the computer while jumping up out of the chair only to hear him say, "ha, I was just testing you. Good reflects. Nice respond time" as he chuckled to himself. WHAT!!?!?!?!?!?!?!?!?!? I have informed him that he can save these moments of levity for the nurses as I didn't need my heart to stop. Funny guy. Really funny guy.

I took pictures tonight but don't want to dig through all my bags to get the camera out. I'll post them tomorrow. The photos may be a little startling so please be forewarned but also remember, he's amazing and is going to be the rockstar of patients recovering.

As he has phased back into unconsciousness, and my heart rate has begun to return to normal I'm going to sign off for now. I'm going to look for a quiet corner to get some sleep. More tomorrow and the days to come. We sending good thoughts and love back to all of you. Thanks for keeping my darling husband in your prayers. Angie