Goodbye 2009

Happy New Year to all of you. 2010 has got to be a better year full of good health, happiness, and warmth and family. It HAS to be better!

Roger is doing better today. He still has some of the wacky, strange personality "episodes" but seems to be overall, more clear headed.

Surgeon came in and said that Roger continues to make progress. The doctor authorized him to start/try a soft food diet. Unfortunately, Roger didn't like what was served - green beans, pasta and red sauce. He's such a picky dude.

I don't have much for you today except for the attached photos.

HAPPY 2010!! We wish you all good health, happiness, and the love and warmth of your family and friends. Neither of us will make it to midnight to actually welcome the new year in so we're doing it now. Love, Roger & Angie

Wow wow wow

We had a hellacious night last night. NOTHING I could ever have predicted. My sweet, easy going, mild mannered guy turned into the anxious, paranoid, agitated guy. He went to sleep and all seemed normal enough though a little weird. He seemed to be settling in. NEVER let your guard down. NEVER.

I was awakened around 1:30am to the sound of a screeching alarm - the bed. Roger was trying to get out of bed. He was hearing voices coming from the floor - he was completely out of it. The nurses came running to find me trying to encourage Roger back down into bed. This happened two more times through the wee hours of the morning. The nurses came back in the third time and rather sternly admonished him and told him to stay in bed. As they left, I quietly told him that they were probably close to restraining him if he didn't settle down. At this point, I finally moved my cot immediately next to his bed and draped my arm over the rail of his bed so that I could keep my hand on his arm. Each time he moved to get out of bed, I was able to rub his arm/shoulder and tried "cooing" (well, as best I can coo...I'm not much of a coo'er) him back down in bed. It worked each time but made for a somewhat broken evening with not a lot of sleep to be had by any one.

Morning came much to early. But with the new day came a new improved approach to Roger's pain management. The hourly feed of morphine was stopped but the "as need" button remained. The fentanyl patch was removed. The haldol was stopped. Tordol was used instead. There was a MARKED difference. Roger still had a lot of goofy moments during the day but you could see the sun start to rise in his eyes and in his disposition. His coherence slowly has increased during the day. Tordol is administered every 6 hours as needed. He had a shot at 8:30 so we have about 5 -6 hrs of peace (he's a sleep). I'll be grabbing whatever sleep I can here shortly. The issue with Tordol is that it can cause issues with your kidney so the doctors and nurses are going to carefully monitor his creatine (spelling?) level to watch the kidneys. For now, it seems to work. I'm just happy to have a little more of Roger in the room with me.

You could tell that he was more present in a couple random moments of picking on me or the nurses. At one point one of the three different rehab therapists came into the room. She worked with Roger on dexterity related movement. She also checked cognitive ability by asking simple questions like "do you know where you are"...smartass responded..."Detroit". She got this alarmed look on her face. I looked at him and asked "are you messing with her?" He shook his head yes and then said "Indianapolis". Poor gal was a little worried and a lot confused.

Roger's chest tubes are still in. The drainage has virtually stopped. I don't have any good indication as to whether or not they will take out the tubes tomorrow or not. There is a possibility. The tubes seem to be causing the greatest amount of pain and discomfort.

Life is full of stress ~ whether work, family, friends, or whatever. Its easy to drown in some or all of it. Its up to us, each of us, to keep our heads....or at least our noses above the water. Put your life preserver on and tread water like hell until the stressful times move on.

I don't know about you guys but I can't wait to kick 2009 in the butt out the door and welcome 2010 with open arms and a big hug. ~ Angie

The aftermath of sleep deprivation combined with pain killers

Once again, I had high expectations for today. With Roger coming off the ventilator yesterday...I think it was yesterday....the days are starting to blend together. So anyway, with him off the ventilator and off the propafol & haldol, I expected him to be chirpy and so much better. Unfortunately, he was not. He slept a good portion of the day. When he was awake, he was dazed and confused. He had hallucinations about anything ranging from drywallers and drywalling to rain coming down from the ceiling in the hospital room, and so on and so on.

As you can imagine, I was a little discouraged. I honestly believe he'd be back to his goofey old self....not the case for today. The nurses & doctors are going to tweak the pain meds to see if they can't clear the fog while still managing to keep the pain at bay. Unfortunately, its not a black and white, straight forward formula. One of the toughest parts of his spacey, "out there" disposition is that he gets antsy and wants to get up and move...sit in a chair upright, go to the bathroom, etc. Problem is that he has two IV poles full of antibiotics, fluids, pain meds, liquid feeding and he has two containers into which the chest fluids drain...so getting in and out of bed is no snap of the fingers. Plus, Roger is no where near as strong as he was 2 weeks ago. He is shaky and wobbles when standing. And, no amount of suggesting that he needs to stay in bed, or in the chair until we have at least two people helping him up and helping him manage all the tubes, wires, and machines. It just doesn't register when you suggest, even suggest very strongly, "DUDE don't get up with out at least two of us here to help you !!!!!" I finally had to say, "look, if you don't wait until we have help, these nurses will alarm your bed and may resort to restraining you". He finally settled in.

Its just really bizarre. I just heard something drop to the floor and looked over at him and asked "what was that?". He responded "a bird just flew in." I went over to the other side of the bed to find the pain button on the floor. As I bent over to pick it up, he said "see? here it is, the bird"...he was holding the edge of a fleece blanket. Really really freaky.

We have moved back to the second floor, the surgical recovery floor (non-ICU). Its quieter and will have less intensive nursing monitoring. We have a room at the end of the hall away from the nurses station. It should mean a quiet night of sleep if I can get him to calm down and go to sleep. Its a larger room that is much much more comfortable with a big window. They brought in a cot for me. I'm looking forward to stretching out as opposed to being squished up in a ball between two chairs.

The other big event for the day was that Roger sipped clear liquids AND had a little sherbet. (the tests confirmed that the leak was fixed) I know its not a ton - just tiny little amounts but it was monumental knowing where we were a couple days ago. There is a chance that the surgeon may take out the two chest tubes tomorrow. I think that would give Roger immense relief. The tubes are hugely uncomfortable.

Time is in a warp. We're both (especially Roger) losing track of the days/hours/minutes. Its hard to believe that we've been here for over 15 days. I'm hopeful we'll be out by the end of the week or the first of next...provided Roger is healthy enough to handle it. I think it would perk him up immensely to be home with his stuff and around the cats and fish. Maybe we'll be ringing in the new year from our living room. That would be the best way to send out a year that we'd all like to forget and welcome in a new one full of promise of "bigger and better".

~ A.

Its a short post tonight

I guess I've developed a little bit of a routine. I'm sitting here across from Roger's bed. He's snoozing away.



We're still in ICU but moving to the non-ICU surgical recovery floor tomorrow. It feels like deja vu. The big news for today is that they did another leak test and CT scan. No leaks were apparent, so the doctor authorized the nurses to give Roger a few sips of clear liquids. He chose apple juice. You could tell Roger was a little apprehensive about taking a sip for fear of a leak...the memory of the incident last Saturday was pretty fresh. Despite the memory, he took a drink and then smacked his lips, with a smile on his face said, "ahhhhh, THAT tasted sooooo good". It was an awesome moment. They want to gradually increase the amount of the fluids after they see how his system handles these fluids. Its really too cool.



He sat up in a chair twice today. Apparently this is good for patients because it helps them use their muscles atrophy pretty quickly from being in bed for so long. Sitting up right encourages the patient to use his stomach, back and leg muscles. He looked a little pleased that he was doing this...but then got quickly tired.



The oddest thing about today is that Roger is very spacey, confused, etc. I haven't been able to identify if this is left over propafol or if this is from the pain killers. He's had loads of strange dreams and hallucinations. Naturally I am THRILLED that he is off the vent but its a little weird or creepy that his is so out of his mind. I'm hoping tomorrow will bring the older Roger back.

I don't have any idea what the schedule will be for the next 1-2 weeks. I predict that we'll be ringing in the New Year in the hospital.

For now, the more immediate hope for tonight is that he sleeps well.
~Angie

a good but quiet day

As I said earlier today, the ventilator came out. Roger is doing well. He has an oxygen boost via a small oxygen tube with a small tube pointing into each nostril. The oxygen is "humidified" so that the moisture helps lubricate Roger's system and vocal cords. He can speak but only in a whisper right now. he

The biggest thing is that he's exhausted. He seems to be awake for maybe 5 minutes and then fades off. Additionally, when he is awake he is confused and spacey. Hopefully tomorrow he will a little more in his right mind. Not that I want some hours long conversation...I just wanted to see a little more of my silly husband's personality. I can't wait to have him back.

We have a nurse tonight that we've had once before. Unfortunately, I don't remember anything about him....good or bad. Roger asked me to stay the night....so I'm snugged back into my corner of the room. I'd rather not have him wake in the middle of the night confused and not having me around.

We're moving in the right direction. Just slowly. Nothing more for today. G'nite. Angie

Short and Simple

All is well. Roger had a great night, great morning. They JUST removed the ventilator!!!!! He is wearing an oxygen mask right now. As soon as they pulled the tube, Roger had a big smile on this face. Even while wearing the mask he had a big smile. Its just awesome.

They'll continue to monitor him closely for the next 24 hours to make sure his lungs are doing well.

Thats all for now. I knew you'd want to know. Its a beautiful morning!

Hmmmmm

The day's nursing staff was an abomination. I'm glad that Denise and I were here. There were three nurses attending to our end of the wing. One female, our nurse, and two males....and all of them SUCKED. you felt your blood pressure rise continually as they sat around and did nothing or surfed the Internet meanwhile monitor alarms sounded in other patients' rooms. We had one go off in our room which took over 45 minutes for the nurse to manage to come in and reset the monitor despite our repeated requests. Fortunately, the alarm was not an emergency - it was because a device on Roger's finger which reads blood oxygen was not working. Absolutely ridiculous. I've been keeping my notes and will be going back to the nursing administrator with the goods, the bads, and the uglies. Not going to do it now as we still have time on this floor with these nurses. I can't imagine being a nurse and not taking your job seriously.... these are people's lives.

Happily, the night nurse, also named Angie, is wonderful. Its amazing to see the difference of a really good nurse verses a really bad nurse. She completely assessed him when she started the shift, layed out all of his meds in anticipation of the nightly doses to be administered, and finally albeit a small detail, she helped position him in bed so that he was COMFORTABLE. Sadly this is NOT something every nurse does. Some flop him around like a piece of luggage and then don't take the time to position pillows, sheets, etc. It makes a huge difference with patient comfort.

During the day shift, there was one good person....also named Angie. She was the respiratory therapist. She really worked with Roger and his ventilator settings. I give her complete credit for how well he has done this afternoon and evening and hopefully tomorrow. The other positive for the day is that Roger sat up again AND even stood up next to the bed. He was completely exhausted afterward, but it was a monumental moment for a patient on a ventilator!!! Roger continues to be amazing.

Roger is doing well tonight. He has had very few coughing fits. Fortunately, with the few he's had, he's been able to regain control without as much physical trauma to his system. You see, when he starts coughing there is a chain of events that happens. First it shakes his rib cage (remember his ribs were spread for the original surgery), then it rattles this lungs and surrounding area which is trying to heal from the stomach bile leak, then the coughing takes his breath away, and finally it all adds up to complete exhaustion. If the coughing is bad enough it may cause fluids to shake loose in his lungs - which has to be suctioned out via the ventilator tube. Likewise fluids have to be suctioned out of his mouth sometimes. Unfortunately, it can feel like you're drowning and throw you into a panic if you can't gain control and settle. Roger has been amazing at doing this. Since Angie figured out the right settings, he has been able to sleep pretty soundly.

I've told you that we measure success now in tiny steps. Now at the close of the day, I can reflect back and conclude we've had a successful, good day....controlled, slow deep breathing and deep sound sleep. Makes me smile to think of it. Cross your fingers for tomorrow. Maybe, just maybe Roger's system/lungs will be strong enough to come off the ventilator.

The shareable (not TOO embarrassing for Roger) Roger Moments have virtually stopped since he has been on the propafol. (though there have been some doosies that I can't share here until I have his permission). Having said that, I will tell you that he is a model patient even on this heavy-duty-knock-your-butt-out drug. He is sweet to all the nurses, he raises an eyebrow with a look of skepticism, he'll shrug his shoulders with this "hmmph, don't worry about it expression" on his face. Really, he is altogether too sweet. I think I've seen him a little frustrated once or twice - but that's it. I stop and try to think about what I would be like on the same drugs with the same pain....I'm afraid I would be the polar opposite of Roger with my head spinning on my shoulders ala Linda Blair/Exorcist. Not a pretty image.

I'm hoping tomorrow continues to be a good day for Roger.

All our love. ~ajw

Roger did well yesterday afternoon. He sat up again. His breathing was solid. He was making some progress. The evening was a little more challenging - though less so than the night before. He had to complete three "tests" for the ventilator to be removed. He did two of the test beautifully during the day, the third test did not go as well. As a result, Roger has not been removed from the vent. My heart started to sink a little last night when I saw that the breathing wasn't going as well as it needed to. I pretty much knew the vent wouldn't be coming out.

So here we are today. The pulmonary doctor came in this morning and adjusted the ventilator settings. The machine is taking less breaths for Roger but is still providing him three big solid breaths to stretch out his lungs. The balance of the breaths are Roger's with a little umph from the machine to get it moving. The challenge today is that he has continued, increased mucus in his mouth, throat, and coughing up from the lungs. As a result he is having to spend a lot of time coughing (which racks his body) and then suctioning stuff out of his mouth. Its pretty exhausting for him.

The balance of the day will be spent with him resting, breathing treatments, "dangling" his legs over the edge of the bed, and more resting. Pretty low key.

I've got a couple movies I'm watching. Will finish a book, and then will start another book.

Thanks for all the good thoughts and prayers for Roger.

Happy Friday

And, Merry Christmas. Remember, we're viewing this as any other day in the week....holiday smoliday. And I mean that sincerely. NO BIG DEAL. So NONE of you need to feel bad or sorry or worry that we happen to be here on December 25. It would be the same if it were February 25 or July 25. Just another day. The focus is no different today than it would be any day....get Roger better. So, no worries no sadness from ANY OF YOU!!!! I'm not sad, not weepy, not in the least bit discouraged. Roger is here and is improving - though slowly - on a daily basis. Positive focus - onward and upward!

We made it through the night though it was a little "tedious" for lack of a better word. Our nurse, Arika, was good at trying to work with me/Roger in adjusting his propafal down but then back up as necessary to get him through the night. There were several incidents/episodes were Roger's mouth/throat area became clogged with thick mucus. As a result it would send him into spasms and cause momentary "attacks". Either the nurse (if she was in the room) or I would suction out his mouth. If the fluid was deeper in this trachea or bronchial tubes then either the nurse or the respiratory therapist would have to clear the passage way with a small tube that suctions out the ventilation tube. I did stay nestled in the corner of the room with a pile of blankets on me (they keep these rooms FREEZING) and a couple pillows all packed together between two chairs... I had myself a fine little nest to snooze on and off until the next episode.

Happily Roger has settled more this morning. The pulmonary doctor has changed the setting on Roger's ventilator so that now Roger is doing all the work. This proves to the doctor and nurses and Roger will be ready to come off the vent. The day for coming off the vent has moved again much to my dismay. The doctor said that if all goes well today then he should come off tomorrow. Roger will most likely have a fair amount of pain in his throat and mouth from where the ventilator was - but its something we can address with pain killer. As of the time of starting this post, 10:00 am , he is resting comfortably. He has woken momentarily, blinked his eyes, and then faded back off. Propafol is at its lowest setting. For the moment, all is good.

More later - just wanted to give you a quick update. Eat and DRINK for us. We've got a fair amount of catching up to do in 2010!

More Yo-Yoing

It was a day of ups and downs today. I had come in with high expectations that Roger's fever would be low, that he'd be coming off propafol which would get him off the ventilator...and a handful of other lofty expectations.

Roger's fever climbed back up to 102 at one point. Our health care team managed to get it down to the 99's where it stayed most of the day though randomly it would climb and fall. Its not unusual for a patient in Roger's condition to run a fever but a little scary for us care givers as you sit and wonder if the fever might be tied to an infection.

Unfortunately last night, the night nurse was not able to ween Roger off the propafol with the current settings of pain killer and haldol (the less intensive option to propafol). He would seize up with coughing spasms that would jack his vitals. So, they left the propafol at a higher dose for the balance of the evening which meant when the pulmonary doctor showed up this morning, Roger was not in any position near ready to be taken off the ventilator.

Fortunately, our day improved with the change of shift and our day shift nurse, Holly on staff. She is amazing. She proactively went to the doctors and told them she thought Roger's pain meds should be increased to take away the pain & discomfort of coming out of the propafol. The doctors agreed. So, the painkiller dilatin (spelling?) was increased and closely monitored for necessary "turbo" boosts. The result? An early Christmas gift for me. He was able to endure nearly 5 hours of significantly reduced....almost no....propafol which puts him closer to being pulled from the vent. He did have a few coughing/choking spasms but was able to rest comfortably. When he woke, he was able to open his eyes and try to communicate with us (charades again, and messages he tried to write out). You could see him trying to focus.

Also, Holly was able to "dangle" Roger which means that the got him to sit up and dangle his feet over the edge of the bed. this was HUGE for him to do. His vitals and breathing stayed steady. He even supported himself... the nurses did not need to hold him upright as he sat there (most patients they would have to assist). He did that once in the morning and again in the late afternoon/early evening. Even Holly was pleased. Holly was the one who proactively got permission from the doctor for Roger to do this. She knew that by doing this, it helps him get his strength and also becomes a good way for the nurse/doctors to gauge how Roger is doing as they ween him off the sedation.

If you can't tell, I'm a huge fan of Holly's. We've now had her three different times and each and every time she has been amazing. She doesn't show up to work for her paycheck....she shows up for the care giving (and, ok then paycheck too). She has been instrumental in working with the doctors to find the best formula for getting him through all this stuff. If I could clone Holly and have her on all our day and night shifts - everything would be perfect!

Roger has been having a series of coughing fits this evening. I started to write this post over an hour ago and am still trying to finish. Anyway, the goal for tomorrow is to try to get Roger off the vent if all is well. I have a feeling if we can't get his coughing/choking under control, then we may have to dial up the propafol and postpone removing him from the vent.

So, I guess I'll stop here. Its 11:30. Santa should surely be on his way. All I want is Roger - healthy, out of pain, off the ventilator and back to his old silly self. If you see the big jolly guy in the red suit, please send along my request. I don't need any baubles or sparkling things....just my hubby.

I had plans of attaching a picture of our fabulous Christmas tree that we have at home...but forgot to take a picture. I'll try to do that tomorrow. I think that I'm staying the night tonight in Roger's room nestled in a chair in the corner. We'll celebrate the holidays in a big way next year. This year, December 25 is just another day which is fine by me.

Love and peace to you all on this Christmas Eve. Merry Christmas ~ A

Tiny steps forward

As in several posts before, I'm sitting next to Roger's bedside. Lights are dimmed. My brain seems to slow almost in step with the ventilator's rhythm'ed breathing for Roger. One breath in one breath out. One thought in one thought out.


Roger has made progress....small, little baby steps of progress. His vitals look good, the drainage out of his chest is becoming more and more clear and is also less in volume. His fever for the majority of the day stayed in the 99-99.9 range. He was responsive when the doctors came in to talk to him and nurses asked him to turn his head or squeeze their hands. All good things. The chest xray from yesterday looked better than the day before. OK - so this is progress, moving forward. What I am reminded of quickly is what the infectious disease doctor told me the first day I met him ~ this is a long process where Roger's progress will yo-yo up and down as the over all progress moves up. By that he means, there will be bad days mixed in with the progress upward.


The day started to turn a little downward around 4:00pm as Roger's fever has started to climb again. He was up to 101.9 when I walked back in this evening at 8. All you can say is CRAP!!! CRAP!!! CRAP!!!! So they have given him Tylenol to help bring down the fever along with cold compresses to the head. I just did the non-scientific "hand to his forehead" test for temperature and it feels like he's cooler....so maybe the fever has come back down. I'll speak with the infectious disease doctor tomorrow morning to try to identify what keeps giving him a fever. I'm hoping they have a culture back from the bile sample they took. It should help the doctors identify what may be causing the fever spikes. Now you can see why the doctor described this process as yo-yoing up and down while gradually making progress. Personally, I could do WITHOUT the downward part of the yo-yo as I'm sure you can as well.


Because Roger has been improving overall, the ICU/Pulmonary doctor said that he wanted to start weening Roger off the Propafol and on to another drug (the name escapes me at the moment). The new drug would make Roger less sedate and will put him closer to having the ventilator removed. The doctor seemed to think we should be able to remove the ventilator tomorrow sometime. It kinda makes me nervous thinking about it which you probably think is odd. You see, on the ventilator with propafol+pain killer, I know that Roger has minimal distress, minimal pain - he can rest. I'm concerned about the pain and discomfort that he may feel once removed from the vent and the propafol (pain killers will stay on board). Plus, if he's not ready to be off the vent - still needs that assistance - then putting it back in again just increases the potential for something to go wrong....NO MORE THINGS GOING WRONG!!!!

Roger's ventilator has been dialed back as well as the propafol. Dialing back the ventilator encourages Roger's lungs to do more of the work. He has been taking 3-9 breaths on his own a minute over and above the 6 machine-pushed-breaths. That means his lungs are working - that's a good thing. You'll probably get tired of me saying "that's a good thing" but I do it as a reminder for me too. :-) The pulmonary doctor will not let Roger off the vent until he his confident that Roger's lungs are strong enough.

There weren't any real Roger moments today. He was out of it for the majority of the day.

We've decided that we're not going to tell Roger that its Christmas when he comes out of the fog unless he asks. There's no point in making him feel bad about being in the hospital over the holiday - and I mean that more from the perspective that he would feel bad for me and for his family. So, much like the story book character, Rip Van Winkle, Roger may "lose" a little time until we get him out of ICU. Once out of ICU and on the regular surgical recovery floor, then we'll fill him in on all that he missed while snoozing.

So as has happened at this time for the past few evenings, I am battling with myself. The desire to stay here with Roger is overwhelming. I want to make sure that nothing happens...that I can chase down a nurse if I need immediate assistance for him, that I can jump up and help him find his pain button to push if he needs it, that I can be here to change the cool wash cloth on this head. The room isn't set up for me to stay. There are two straight back chairs and that's it. So, I will have to put my faith in the night nurses to be attentive. My aunt Charlotte said she had read recently about people hiring a private nurse to come into the hospital and sit with a patient in recovery... Its a mighty tempting thought. We should be fine tonight with the night nurse ~ there are only three patients (including Roger) on the floor and they all seem relatively quiet. Our nurse has two patients and the other nurse has one. I believe she will be here for him....I'll call in during the middle of the night....just to make sure.

~ A

so, once again I'm a little at a loss for words. There's a whole lot in my head and even more in my heart. I'm sitting here at Roger's bedside. The machines are whirring away. The ventilator is filling his lungs with air, the IV pumps are filling his veins full of propafol for sedation, "fluids" for hydration, anti-biotics to help beat the infection, liquid "food" for hydration, and painkiller...to kill pain. This is exactly what Roger would have wanted a picture of...and will be exactly what he's going to have to miss. Its a bit overwhelming.

Roger made small progress today: much of the fluid in his chest has drained, his fever has dropped to the 99 range, his ventilator was dialed back closer to a weening-mode and yet, as I sit here I can vividly remember how great he was doing last week (wow, "last week" feels like a life time ago). Its a tough comparison. This is a day-by-day process for Roger. Progress is measured in very small, very slow steps. All of the doctors have told me, that this will be a very slow process but we'll get him through it. So patience my friends, we're in for a very long run. I think we finished the first marathon and have somehow landed at the start of a new marathon.

So, I have for you a little Roger moment. The doctors tried to dial Roger's propafol back a little today which meant he was more conscious than he has been since he came out of surgery on Sunday. He still dozed on and off but when he was "awake" he had a good deal of movement and tried to communicate as best he could. We found that we were playing charades to some degree as I tried to guess which body part Roger was referring to or what he wanted to do move, adjust, etc. The nurse untied the restraints that hold his hands down from the ventilator tubes so that we could stretch them and move them around a little. He knew not to touch the tube but kept touching around it as if to tease us....he'd move close to the tube, then gracefully move his finger up to his eye and itch it, or his nose or his chin...never once touching the tube. He even motioned to the tube at one point and waived his hands back and forth like a referee would to indicate "no". So, the Roger moment: the nurse was getting ready to leave the room and Denise and I were trying to encourage Roger to take a nap, I subtly suggested to the nurse that she might want to "snug" Roger down (tie his hands again) - he shot me this "Roger-look" with the unspoken words of "SHUT UP" attached. I explained it was to prevent an accident while he was sleeping that was all. He tried to pull some extra slack in the ties as the nurse was securing him. She caught it and took the slack out. He then tapped her on the arm to get her attention and then pointed at ME and then motioned with his hands as though he were trying to tie something. Denise very quickly translated: "do you want the nurse to tie Angie up instead?" to which my not-so-darling husband responded yes with a shake of his head and his eyes moving up and down. Only Roger.

Roger has quickly become a favorite among the nurses (go figure) - as a result, I think that we have a great group of nurses lined up for most of the balance of the week, with a few unknowns here and there. At least three have already told me that they are going to claim Roger when they come back for their shifts through the balance of the week. It certainly helps ease my mind. I've made a special point to come over in the evenings to meet and talk with the night nurse to make sure that I'm comfortable that they will be attentive to Roger. Should I feel otherwise any of these evenings, I will simply stay the night at the hospital as I did when we started this journey. There's simply no room for mistakes, or lack of detail.

The doctors are leaning towards taking the ventilator out in the next couple days or so. The ICU doctor wants to leave it in longer than the surgeon...so I'll find out what direction we are going tomorrow most likely. I anticipate that they will take another chest xray tomorrow to see how the fluids look in his chest. The nurse told me that today's xray looked better than yesterdays...those baby steps of progress.

I spoke with a girl friend today and she asked "How are you handling this? How are you holding up?". The simple answer is fine. No lie. Fine. Fine really is the only option. It is not an option to crumble and fall to pieces, it is not an option to freak out. Its simply not. My job is to take care of Roger and get him well - that means my option is to get us both through this. No amount of freaking out or crumbling is going to help Roger nor will it help me. This is survival mode - you stay focused on the important things for survival - fighting through the tough stuff. In the question of "flight or fight?" I'm definitely (and always have been) a FIGHT kinda person. I told Roger early on when he first started chemo "I need you to fight half as hard as me - you do that and we'll get through this."

The focus is and will continue to be getting Roger healthy...the "what ifs" don't matter. What matters is TODAY here and now...staying positive. Maybe come January or February once Roger is out of the woods and home resting, maybe then there will be a moment of crumbling, but not now. Having said that, I will tell you that there small momentary "leaks" usually when I'm driving alone in my car, or the past two nights when I've come home to bumble around an empty house. The leaks are like a passing Florida afternoon shower - come and gone before you know it. I kinda view the leaks as emotional purging so that you're fortified with new resolve to keep going.

Everyone of us has the stuff inside us to get through the horrible, most toughest of times. And when you think you don't, you'll find something that gives you that moment of peace and strength to steel up the necessary courage and forge your way through. I don't pretend to know how or why...just that it happens.

More tomorrow. I'm going to do some exercises with Roger's arms and legs and then tuck him in for the night. I have a good feeling about the night nurse, so I'll be sleeping at home tonight.

have a good evening. angie

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

The night before...

Well, its Sunday evening. The night before Roger's surgery. I'd be lying if I said that we weren't a little nervous. By now, as you can imagine, Roger is tired of talking about the surgery...probably too much a reminder of what is happening.

We tried to stay busy all weekend with family get together, visits with friends, and tons of errand running/project doing. Anything to keep our minds off what is happening. Easier said than done. We got all the projects done and now we're ready to go...(Roger's words)

The words just aren't flowing tonight. So, I have to offer my apologies. I'm taking the computer with me to the hospital. I'll be staying there with Roger and then headed home during the day to check on the cats, take in the mail, etc. ~ then back to the hospital.

I'll have loads of time to update the blog and fill you in on how Roger is doing. Tomorrow, I'll post an update of how he is doing once he is out of surgery. He wants me to take pictures, so I offer the warning again that there may be some photos that are a little startling. He wants to know how he looks throughout this process and all the various machines that are around him. I think its a bit gruesome but said I'd take the pictures. I'm sure this will make for interesting conversation at the nurses' station when they see this wife taking pictures of her poor husband just after surgery.

Love and thanks to all for the calls and emails this weekend. It gives us both great strength. Much love. Roger & Angie

The big day

We finally met with the surgeon, Dr. Freeman this morning. Ultimately the purpose of the appointment was to discuss whether or not Roger is a good surgical candidate to have his esophagus removed (esophagectomy). So, unlike our last attempt to meet with Dr. Freeman, we actually made it to the appointment, checked in, and met with the doctor. To cut to the chase, a date has been set for the surgery.... Monday, December 14! Basically, we had two options ~ either the 14th or the 28th. The doctor wanted at least 6-8 weeks between the last radiation treatment and the surgery....which is the week of the 14th. The doctor's schedule is pretty limited because the procedure is estimated to take 6 hours - so a whole day is pretty much blocked out for the procedure on the doctor's schedule. Again, Dec 14 is the day.

One of the first things out of the doctor's mouth today was how pleased he was that Roger was doing really really well in his treatment. Dr. Freeman was genuinely pleased/excited that Roger was sooooo healthy. He said that Roger is an excellent surgical candidate and should do well with the surgery because he is so healthy. Separately, from Dr. Freeman, Lisa (Dr. Freeman's surgical nurse) also expressed the same excitement/enthusiasm with how healthy Roger is and how well he should be able to do with the surgery. Both of them repeated that Roger should come through the surgery well. Both independently said that Roger is much much better off than most people who have the surgery.

Dr. Freeman proceeded to explain the surgical process, the time frame, and the recovery as well as answer our questions. The process: we go in at 6:00 am. Roger will have a serious of tests, blood work, etc to make sure that he is "ok" for surgery. He will then have the surgery wherein they make an incision in his chest approximately 4-5" to free the stomach from the esophagus. Then a second incision, even smaller in size, will be made on his right side under his arm pit. At this second incision site, the doctor will spread Roger's ribs to access the esophagus and free the lower 2/3 of the esophagus to be removed. The stomach is then moved up and rotated. A portion of the stomach that was near the cancerous site in the esophagus is removed to insure a "clear field" from the cancer. A small section of the stomach is then used to create a new small esophagus that is then attached to the remaining 1/3 of the original esophagus. During the operation, a feeding tube is inserted into Roger's small intestines; this will be used to give Roger hydration and nutrition until he is able to drink/eat by mouth. Roger will then spend 2 days in the thoracic intensive care. He is expected to be in the hospital a total of 7-10 days.

The day following surgery, Freeman said that they will have Roger is supposed up and moving. The 7th day after surgery, they will have Roger do a swallow-test to make sure he can swallow and to make sure there is no leakage at the incision areas of the stomach and remaining esophagus. If there is no leakage, they will try to get Roger drinking more and ultimately eating soft foods.

Roger will have an epidural for pain while in the hospital. The greatest pain that he is expected to experience is from his ribs being spread. As explained by Dr. Freeman, the other areas including the incision sites, while painful should be the least of the areas of pain. Dr. Freeman said that the pain is not as intensive as a broken rib, nor as long lasting but is painful nonetheless. He said he was confident that they could help Roger manage the pain.

When Roger is released from the hospital, according to Dr. Freeman, he will be able to move around and function well. Of course he won't be back to "normal" but at the same time he won't be an invalid. Dr. Freeman and Lisa both said Roger will not be released from the hospital until they are comfortable that he can get around. Roger's sister Denise, recently expressed concerns about Roger's recovery (based on her experience from similar surgery 23 months ago) that Roger would not be able to go up/down stairs and thus would have recovery issues in our house. We shared the same with the doctor. He looked at us and said, "No. That should not be an issue for you at all. You should be able to get around just fine ~ you should be able to do stairs. We're not going to let you out of the hospital until we are confident that you can be mobile safely". Roger's surgery is much less invasive (though VERY invasive nonetheless) than Denise's...so the recovery, sounds like it may be slightly/somewhat different. It sounds like, if Roger is able to get his nutrition via mouth, then they will remove the feeding tube early...maybe within a couple weeks after the surgery.

The greatest area of concern for the surgery is potential "leakage" from the site where the stomach is reattached to the remaining 1/3 of the esophagus. Though not expected, if there was leakage then a second surgery would be scheduled to remedy the leakage.

It was a day of mixed emotions: 1) fear of the coming surgery, 2) general anxiety from this whole process, 3) a sense of resolution...we finally have a date... like I said, everything. Its the full gambit of emotions. Its pretty exhausting to run through all of these emotions in the course of a week let alone in a single hour. As with the past several months...one day at a time....breathe in...breathe out.

Now this day would NOT be complete without at least one classic "Roger Moment". Allow me to set the stage: this was during our conversation with Dr. Freeman. We both had been peppering him with questions about the procedure, Roger's recovery, etc. Dr. Freeman had just explained that Roger's stomach would be moved up into Roger's chest area and attached to the remaining portion of the esophagus. We asked how this would affect Roger's eating habits in the future. Dr. F said that Roger would need to eat 5-6 small meals rather than 3 large meals (like bariatric patients go through after bariatric surgery). With a very sincere, very earnest look on his face Roger looked at Freeman and asked, "so, if I eat a large meal and am feeling full....will this make my boobs get larger??" Freeman, in his uber-professional doctor-mode, looked at us quizzically, initially not quite understanding the gist of the question and then the light bulb came on. He realized Roger's line of questioning.... "my stomach has moved up into my chest, when its full, its going to expand...I won't be loosening my belt because the stomach is higher so it must make my boobs grow bigger". Poor doctor. He turned a couple shades of red, started choking, chuckled a couple times, and responded "I'm not going there" . The appointment was pretty much over from that point on. Freeman basically ran out of the room. Roger leaned over to me and whispered..."bet you he'll remember this little conversation and ME when I'm on the operating table." Roger and his lasting impressions!!

You now know everything we know. We'll start thinking more about the logistics of the recovery and how much additional assistance we will need. We may approach additional assistance on an as need basis depending on how Roger is doing. Again, as referenced above, the doctor and his staff repeatedly stated that Roger should be mobile - though in some pain. We feel fortunate in knowing that there are so many family and friends out there ready to help anyway possible. And we promise to let you know when we need help.

More to come in the days to follow. Much love to all. R & A

Happy belated Thanksgiving!

No turkey-day at home for us. We loaded up the family truckster (how's that for vintage Chevy Chase "Vacation") and headed south for Florida last Wednesday. Some 13 hours later around 1:00 a.m. EARLY Thanksgiving morning, we arrived. Ok, so the drive there and back was a little insane...who drives 13-14 hours straight with minimal stops for bathroom breaks or food???? The answer to that purely academic questions: Roger Wethington. He's a lover of long car trips. Me? I'm a lover of NO car trips. We are in more ways than one, an odd couple without doubt. Our individual oddities are tied together by a passion for life and a passion for each other so it all kinda works its way out.

It was a last-minute decision. Tough to leave family behind on the holiday of feasting but the call to sunshine and the ocean was too great. It was our only "vacation" for the year. Short though it was - it had a restorative affect on both of us. Its amazing to see how relaxed Roger becomes near or on the water. He was more relaxed than I have seen in a very long time. I was able to just slow down for a few days. I'll admit that Thursday evening was a little tough for me as I sat in a chair watching tv but feeling anxious that I had something I needed to be doing. Its been full steam ahead for quite some time....so slowing down to a veritable halt... away from the house, away from all the various to-do lists, etc. was an abrupt and uncomfortable change for me that first evening. Eventually I figured out the vacation groove - just in time to pack up the truckster and head back home. :-) Roger is much better at vacationing than I am. We napped and slept and walked the beach and rode bikes and basically did a whole lotta nothing.

Roger has been doing well for the most part. Unfortunately he still has some pain and some discomfort but he is managing. Energy level is much closer to normal than it has been for months. His hearing is still off a little. Eating is not as "carefree" as it once was. He has to pay attention to what he eats and how much. Certain food items still give him issues but he's learning what to avoid. The newest issue/challenge he has is his cholesterol. He had blood work done a week ago which revealed that his cholesterol and triglycerides are OFF THE CHARTS. I guess normal for cholesterol is supposed to be below 200...our dear Roger has a count of 356!!! And of course, what do you expect? While going through chemo/radiation he lived on eggs, milkshakes, fast food hamburgers...the meals of champions. You feel a little like "damned if you do, damned if you don't". Unfortunately Roger has known that his cholesterol tends to be high but he doesn't like the cholesterol controlling drugs so he stopped taking them pre-cancer. So we get to add this to the list. He needs to go back and see our family doctor and come up with treatment/diet plan going forward.

Mentally - Roger is doing well. Better than most in his position. You can tell periodically that it the whole thing must weigh heavily on his mind. Tonight over dinner (salads for our start on a low cholesterol diet!), I asked him what he wanted for Christmas in the event someone asked for a gift idea. His response was simple and pure..."Life. I just want to be alive. I want to be on the topside of the grass verses the alternative. That's all I want for Christmas"

We meet with the surgeon this Wednesday. We'll put up a new post on the blog after we have spoken with him. Hopefully we'll be able to tell you what the surgery date is going to be.

And the verdict is....there is no verdict

The week has turned out to be more challenging than I ever could have predicted. As you will recall from our earlier post, we were meeting with the surgeon on Tuesday and the oncologist on Wednesday to review last week's tests and determine the timeline for surgery. Sounds easy right? Well, not so much so.

Tuesday afternoon, I left the office to meet Roger at Dr. Freeman's office at 2:15. All should have been fine, right? Um, no. We checked in with the receptionist and she promptly asked for the CD with the films from the PET/Scan. Roger had given me the CD with test films last week after the PETScan. I knew we needed it. I had his file with us - I had the written interpretation of the PETScan....but had unfortunately left the CD version DOWNTOWN in my office. The receptionist immediately scolded us saying "I called you yesterday and specifically told you to bring the CD" to which my rather heated response was "NO you didn't call me! No one called me!" only then did I look over at my sheepish husband as he raised his hand and declared "she called me". She immediately responded "so we have to get a new date for you". I tried to push for them to use the written version of the test results that day so that we could meet with the doctor....no luck. As I felt my blood pressure increase, the thought occurred to me that maybe it would be more effective for me to communicate with this receptionist if I crawled through the scheduling window and sat on her. ??? Sounded reasonable to me. Mr. Don't Worry 'Bout It Roger Wethington merely shrugged at the nurse and declared to both of us...."no big deal. We'll go with the next available day" That new date to meet with the surgeon is December 2. Ok - nothing we could do on Tuesday. Roger came downtown to get the CD and then took it back to the surgeon's office, just in case. Didn't do any good. No earlier date. Still meeting with the surgeon on December 2.

Wednesday went as planned! Yahoo. We met with Dr. Birhiray (no snafus, no mistakes) to review the test results. He was pleased. He explained that he wasn't worried about the abnormal shape of the bad lymph nodes. The fact that the needle biopsies came back with initial results as negative for cancer was good! The chemo and radiation did what they were supposed to do. We explained to Dr. B what happened with Dr. Freeman the day before in hopes that he could pull some strings...talk one doctor to another. Dr. B said he'd call Freeman for us and see if he could get a date for the surgery as he understood our (my) concern for getting the surgery done before year end. Um, yah. No luck. The doctors chatted - but nothing changed - the date for meeting with Freeman for a pre-surgery consult is still Dec 2.

As I mentioned before in an earlier post, we are trying to get the surgery in before the end of the year. We tried shopping for a second or third opinion from some doctor who would say "Roger doesn't need to have the surgery". Unfortunately, not one doctor was willing to say that. So, we know he should have the surgery. The question is when. There are two reasons for having the surgery now: 1) stay on course with the prescribed treatment, and 2) take advantage of the fact that we've paid all of our deductible and all of our out-of-pocket expenses. Despite knowing that...Roger is understandably none too thrilled about the prospect of surgery. So when the date for meeting with Freeman got moved to Dec 2, Roger did a little happy dance. As Roger puts it, he has grown attached to his esophagus - he's had it for 49 years - so he feels like he's losing a friend. :-)

So now you know as much as we do. The good stuff: Roger is his same ol' obnoxiously funny self. Making silly jokes, harassing the cats and harassing me. He's made dinner a couple times, has been working on the house, and has been going back into work. He's back to his affection self. Its really amazing....the old normal feels sssoooooooooo good! It makes me smile even now to think of it.

The holidays? We're driving to Florida for Thanksgiving. Getting the helloutta dodge for a tiny bit and hopefully getting a little sunshine in the process. As we drive back, I anticipate that we'll have to stop at a Christmas tree farm to get a tree - albeit waaaaay too early. As for Christmas itself, well I have a feeling it will be spent with some of the city's finest caregivers in St. Vincent's hospital.

When we have a date for the surgery, we'll let you know. If we don't talk to you before then, have a wonderful Thanksgiving. Eat well, enjoy the company of your friends and family, and be thankful for life. Its a wonderful thing. ~ R&A

Thurs & Fri at the hospital...Tues & Wed more hospital time

Roger had a PET/CT Scan this past Thursday and then Friday had an endoscopic ultrasound. Thursday was uneventful. Friday...Friday the 13th (literally) turned out to be a figurative Friday the 13th also. The backdrop, we had several trials and tribulations trying to get these tests scheduled. Tests were scheduled and unscheduled and rescheduled at least three times. We finally got dates established for this past Thurs 11/12 and Friday 11/13. Only to have a last minute fire drill when I received notice that Roger's procedure on Friday had been erroneously cancelled. Nothing a bunch of emails, a bunch of phone calls and a personal visit to the hospital couldn't fix - though we were on pins and needles until about 11:00...the procedure was scheduled for 3:00.



Friday turned out to be longer than anticipated and even more anxiety-ridden than anticipated. We showed up at the hospital at 2:15. The test was supposed to be at 3:00. They did not take Roger back until 4:00. As he was being taken back to the procedure room, the nurse told me it would be 30 mins for the procedure. I was told once he was in recovery, then they would come get me. 4:30 came and went, 4:45 came and went, 5:00 came and went, 5:15 came and went...my anxiety level increased with each passing 15 minute increment. Finally at 5:30 a nurse came out to tell me that they were just finishing up with Roger. The procedure took longer than expected. Part of the delay was also because one of the necessary pieces of equipment had not been prepared (??!?!?!?) for the procedure. The nurse told me that the doctor would speak to us in the recovery area.

All kinds of crazy things ran through my head. Why the delay Why the delay Why the delay??? What could be taking sooooo long??? I couldn't help but remember (and relive to some degree) over 3 months ago when I was sitting in this same waiting area and the nurse came out to usher me into a private consult room to tell me that the cancer had spread to Roger's lymph nodes. The passing minutes seemed like hours slowly dripping way. There were 2-3 other families also waiting for a loved one. As my anxiety increased, so did the sensitivity of my hearing... I listened intently in the direction of where the recovery area was -hoping to hear a nurse headed my way - only to be distracted by the older couple behind me talking about their ddddaaaawwwwwgggggssss. Dawwgsss???? How about dogs???? Ughhghghghggh ! Why couldn't we all just sit quietly? Its seemed like such a small thing to just sit and be quiet. Fortunately as I thought a scream of frustration my escape my mouth, a nurse came out and called "Wethington".


I found my loopy husband snugged up in blankets in one of the recovery rooms. He was in considerable pain (and has been most of Saturday and a little today) because of the endoscopic procedure after having had radiation so recently...the tissue is very tender. Dr. Al-Haddad came in shortly thereafter to discuss the results of the procedure. He said the esophagus itself looked good and that if he didn't know any better, he never would have known that Roger had radiation to the area. The nodule/tumor was gone from the esophagus. All good things. He took a biopsy of the area and then also took multiple biopsies of the three cancerous lymph nodes. All biopsies were scoped in the operating room and all came back negative for cancer!!! A very good thing. Unfortunately, the doctor didn't stop there. He went on to deflate our balloon slightly when he said "but...." I had to remind myself "breathe in breathe out...focus focus focus". Roger was too loopy from the propafol to actively participate in the conversation.

Apparently, the lymph nodes are still abnormal in size/shape. The doctor had expected them to return to a "normal" shape/size. Sooooo, what does this mean? Well, we're not altogether sure. The preliminary biopsies all showed that the lymph nodes are clear of cancer. We meet with the surgeon on Tuesday in the afternoon and then meet with Dr. Birhiray the oncologist on Wednesday. We'll go in with a list of questions and will do research between now and then.

So the weekend was tougher than expected. We both wanted to be excited and had hopes of going out to dinner Friday night. Unfortunately, Roger was in so much pain and discomfort that he wasn't up for it, and I wasn't up for it because I was trying to process the information the doctor gave us.

Today, Sunday, he still has pain but it is substantially less. He's still a little dehydrated (almost passed out at the hardware store when he stopped there to pick up some things for the house) - but he has learned to pay attention to the "signs" and sit down when the lights start to flash.

So that's where we are as of today. Two steps forward...one step back.