Recovering From Surgery

Recovering From Surgery

It has been a little over 7 weeks since surgery.  I would say my recovery is going pretty well since I last posted on September 29.

We met with Dr. Dunst, my surgeon, about 4 weeks after surgery.  The weekend before that meeting I started drinking and eating different liquids and soft foods, the first I'd had through my mouth since surgery.  We reported the results to her and she gave me the green light to eat anything, but to be really cautious with each new food - little bites, chew a lot.  The only foods she warned me off of were steak and carbonated beverages.  She also reduced my time on the food pump from 18 hours a day to 8 hours a day.  I'm getting about 1000 calories from the food pump and the rest through eating.  I've held my weight steady at around 228, which is at least 23 pounds overweight.

I've been working at the office for three full weeks, starting just after I was reduced to 8 hours a day on the food pump.  Prior to that I was working full time from home for a couple of weeks.  My total down time from work was about 2-1/2 weeks.  I did not work at all for the two weeks starting on my surgery date and I worked 1/2 time for the 3rd week.  Sitting in front of a computer monitor and working is not very much more taxing physically than watching TV.  I was paid the entire time.  I had a week of vacation and the rest was covered by disability insurance that Symantec had.  What a great way to spend my vacation.

I've been walking for exercise.  For the last 3 weeks I've been walking with Steve Zeigler and Steve Scalpone during lunch at work.  We have a loop mostly through parks and on trails that is about 2-1/2 miles.  My brother Powell joins us on Friday sometimes. On the weekends I walk with family.  Here's a picture of Martha and I on a walk last Sunday (10/27) taken by Caroline:

I'm still kind of tender in my abdomen.  I feel some pain in two specific places, one is at the biggest scar, when I move in certain ways, mainly picking something up with my right arm or pushing with my right arm.  It is repeatable.  But interestingly, it goes away while I'm walking.  So it may be more a stiffness pain.  But it is real when it happens and it hurts a little.  I definitely adjust what I'm doing to avoid it.  Getting in and out of the car is always adventure.  I used to grab my laptop and get out with it in my hand.  Now I just get out then walk over to the passenger side door and grab the laptop.

Oct 30: Chemo Round Two Begins

Oct 30: Chemo Round Two Begins

I just finished my first round of chemo.  My schedule is to go 4 times, once every 3 weeks, so I'll be done with treatment 9 weeks from today if all goes as expected.  As I well know, done with treatment does not mean it gets better.  The 3-4 weeks after my last chemo session will be when I'll feel the worst.  Also, I will definitely lose my hair this time.  

I had chemo and radiation over a six week period prior to surgery.  Why am I having a second round of chemo?  When my surgeon, Dr. Dunst, removed most of my esophagus she sent all the tissue to pathology to be examined.  The report came back that I had six lymph nodes and three contained live cancer cells.  The original tumor had shrunk, but had not been totally "killed".

Only six lymph nodes?  Dr. Dunst said this number is unusually small, she said the pathology lab knew she'd be calling back so they double checked.  Yes, only 6.  She expected the number to be in the 15-22 range.  She does not know why there were only 6.

Three of six lymph nodes have live cancer cells in them.  This fact is why I'm in chemo for a second time.  The cancer cells have proven they can "travel" since they've moved to different lymph nodes.  Have any live cancer cells gotten out of the lymph system and traveled to other parts of my body?  There is no data to know this right now.  I've talked with three doctors about this, my surgeon, my original oncologist (chemo guy), and an oncologist Dr. Dunst really respects at her hospital.  All three said "we do not know if cancer cells have traveled."  All three seemed to say either "it is likely" or "why take a chance?"  That is, you should have another round of chemo.  So I am.

I've been dreading this day for weeks, ever since Martha and I decided it was the best course.  The chemo drugs I'm taking are quite different than last time and being given at full strength.  In the original six week chemo-plus-radiation, the purpose of the chemo was more to enhance radiation than as chemo by itself.  Also, the fact that I was taking chemo every week meant (I think) that they had to give me a less powerful dose.  I believe my Oncologist said "50% strength".  Now I have a 3 week interval between treatment in which to recover so I'm getting full strength.

Sep 29: Healing, Tethered to the Feeding Tube

It has been 10 days since I got home from the hospital.  For 18 hours a day I am tethered to the feeding pump.  This is roughly 6pm to 12 noon.  Then from noon till 6pm I am free.  I do mostly the same stuff when I'm free as when I'm tethered.  Martha and I go to the track at Southridge HS so I can get some exercise.  I walk at least 1/2 mile, sometimes 3/4 at a session.  One day Martha and I went twice, once right after I unhooked and once before I hooked back up to the pump.  Powell came over and walked with me on Friday.  It was raining and a little windy.  Yesterday the rain was so bad I did not go.  Today may also be a too-rainy day, we'll see.

I spend 99% of each day just hanging around the house reading, browsing the internet, watching TV etc.  I am working 1/2 time (since Wednesday) and I start working full time this coming Wednesday.

I have had nothing to eat or drink through my mouth since the surgery, which will be 3 weeks ago this Wednesday.  We meet with Dr. Dunst (my surgeon) a week from Tuesday.  She wants me to have tried some liquids (including a milk shake) before we meet with her.  I'm going to start the liquids on Saturday.  Slowly, water first.

I have had no serious problems.  When I first got home I could not sleep on either side - my abdomen hurt too much when I tried.  Now I can sleep on both.  This makes a big difference and I'm sleeping ok.  Not great, just ok.  The problem is I'm getting water automatically and have to get up to go to the bathroom a few times a night.  I have to haul the pole (see below) along with me, so it wakes me up.  The only two problems I have are:  my breathing is shallow and my lower back muscles hurt if I stand for very long, almost like they are getting ready to cramp.  The shallow breathing must have been an expected consequence of surgery since they gave me a device to measure how much breath I could take in and told me to work on increasing it.  Why the back muscles seem to be cramping, I do not know.

The Pole, the Pump, and the Feeding Tube
The formula,"Jevity 1.5", and water are pumped directly into my upper intestine.  The formula is pumped at a rate of 90ml/hour.  90 ml is not that much.  The formula and water are hanging in bags off a 5-1/2 foot pole.  The pump is a little blue box, "the Kangaroo Joey", that is also attached to the pole:

If you look carefully you'll see a small tube dropping down out of the middle of my sweatshirt.  You cannot see the entire tube, but the other end comes back up and into the pump, between the black power cord and the pole.

Martha is the expert on setting up the pump each day.  She has been my hero. She learned it how to operate the pump at the hospital from one of the nurses who was really helpful (Sabra).  Martha sets the pump on totally automatic - it switches back and forth between food and water.  All we have to do is make sure the bags do not get empty.  Martha does all of that also, except in the early morning I top off the bags.

The tube from the pump connects to the feeding tube which was surgically placed in my abdomen:

My hand is holding near the end of the tube from the pump.  That purple thing at is kind of like a nozzle that fits into the feeding tube.  The feeding tube is the sort-of-Y-shaped gizmo that says "JEJUNAL" on the side.  For the 6 hours or so when I'm detached from the pump, I just tuck that small tube including the Y-shaped gizmo in my shirt.

Going Home Tomorrow

Wednesday Evening.

I am leaving the hospital and going home tomorrow.  We're outta here at 12:00 noon.  There is a lot of anxiety about what feeding tube/pump we'll have at home.  The home-care company that my insurance company contracts with does not supply the same exact pump that we've learned on here.  My doctor has prescribed 18 hours on the pump and 6 hours off every day.  I'll be receiving 92 ml of food an hour for a total of 2300 calories per day.  The Jejunostomy feeding tube is very narrow, I'm guessing about ~3/16" diameter on the outside and at least half of that diameter is tube wall.

We've been getting contact info so if anything goes wrong at home we have people to call.  We have to worry about all meds we're getting because nothing can be taken through the mouth for 3-1/2 weeks, everything have to go through the feeding tube.  If available, we get elixers (like Children's Tylenol), if not we have to get pills we can grind down into very small powders, then dissolve in water, then manually push it with a big syringe into the tube.

As I said: 3-1/2 weeks.  I hope I can make it.

The nurses and the doctors (and Powell) have all said I am doing great.  I walk at least 5 or 6 times a day around the loop on this floor.  Today I started walking up stairs.  The first time I did 1-1/2 flights and was getting winded.  My nurse stopped me as she got nervous.  The second time I made it up 2 flights of stairs and was definitely panting.  We took the elevator down.

Powell has been in every morning this week to visit.  Lori came with him yesterday.  It is good having visitors.  Julia (my niece, Powell and Lori's oldest daughter) came by for a while today.  She got here about about 5 min. after her Dad left.  Julia was really dressed up because she was going to an interview when she left.  Every night my family comes by.  Martha's friend Stephanie Quirk came by one night and Caroline's friend Devon came by.

Some Visitors

Martha, Steph, Paul and Amy

Dave and Veda

Surgery: day 4 post op

Written by powell

Sam is in good spirits.  He was reading stuff on the internet when I walked in.  He self administered pain meds 3 times today.  He could be taking 4/hour so he seems to be doing well.
o 6:30am to get out of bed
o 9:00am before the walk (was not in pain just anticipating it)
o 11:30am after getting back into bed, sore back.

Sam took three laps.  No problem, no pain.

The Dr. said best case, absolute best everything goes perfect, could be three more days in the hospital (anticipating longer).  Food tube is delivering 15cc/hour and just got upped to 30cc/hour.   Hard to tell how well the food consumption is going, no diarrhea - good,  no poop - bad.

Sam is hungry.  Not even a drink of water is allowed.


Go Shockers:

Surgery Recovery, Day 3 - Evening

This is Caroline.

Dad obviously posted the earlier post, and gave you a clear overview of the morning and early afternoon.

He had his first guests this afternoon.
He has been talking more (than yesterday) to my mom, Kevin and I, and watching college football.

He walked around the floor a few more times than yesterday, and is actually getting ready to go on another walk with the evening nurse (whom has been his nurse for the past two nights). Real Time: They just made one loop and he passed the room saying he wanted to make a second loop, and they are off...This is the first time he has completed two loops of the floor. The nurse claims the floor loop is 1/15 of a mile.

He is still commenting on his breath and noticing the difference of breathing post surgery than before surgery when he did not think about breathing. Dad has now returned and he and the nurse are talking about breathing...He especially notices it when he gets in and out of bed and when he sits down in the chair or gets back in bed after walking. He is also on the same drug that he can dispense himself, and it sounds like the nurse might give him some Tylenol to help with how he feels at certain times when he is breathing.

Not that dad has paid attention, but I think the view could be worse...The image below is looking west.

Surgery Recovery, Day 3

I've been moved to room 740 in the Cancer Tower at Portland Providence.  Exit 3 off of I-84 then head back west on Glisan to 47th.  The easy access is from 47th, just south if I-84.

I am alert enough to sit at a computer and type in my blog for a while.  The picture that Caroline posted yesterday shows Dr. Christy Dunst, my primary surgeon, and Dr. Radu Peskaro who is a fellow under Dr. Dunst's tutelage.  He can write orders.   He came by this morning and said it is time to get onto the feeding tube.  We begin with 15 ml /hour.  If everything goes well, it will ramp up over time to 100ml/hour.  So far, the only "feeding" I've had is from saline IV's.

I took a walk last night around 12:30a when I woke up with a headache and was feeling kind of lousy.  That walk was very short, after about 40 feet we turned around and came back.  I felt worse.  This morning at 8:00a I walked around a loop that might have been 60-80 yards total.  I'm feeling better and planning on doing that again in about 20 minutes.  Then a sponge bath.  Then I'll get back in bed and hope that I haven't over done it.  I know that if I've done too much I'll feel bad.  On the other hand, when a slow walk of 80 yards is overdoing it you realize how much much further you have to go.

The doctors have thankfully removed a lot of tubes that were connected when I came out of ICU.  There was a tube through my nose into my stomach to suction out any stomach contents.  That really irritated my throat, which was incredibly sore for two additional reasons: (1) the breathing tube and ventilator and (2) the main incision through which the operation was performed was high up on my throat.   Here is the incision in my throat, you may have to blow it up:

They removed the bladder catheter.  They like to remove those as soon as possible because they are primary source of infection.  I was under anesthesia when they put it in.  It felt really weird coming out like it kind of hurt, but when it was out I felt fine.  I was very nervous about the first time I urinated without the catheter, but had no burning.  Since it is difficult for me to get in and out of bed, they give me a "urinal" (which is kind of like an empty plastic milk bottle) which I use while in bed.  Guys have it a lot easier then girls.

They removed two IVs from my right wrist, one was arterial. I'm getting all IV stuff through the one in my neck, which everyone refers to as "a main line".

Finally they gave me this breath quantity measuring device to help me improve my lung capacity.  As I breath in, beyond a certain point it really hurts, due to the surgery.  Here's a picture:

Surgery: Status Update - 7:45 PM PT / 9.13.13

This is Caroline.

It is 7:00 which means the nurse change is currently happening in the room. The new nurse is his same nurse as last night. She is very friendly. In the midst of the change, the surgeon stopped by for about 15 minutes to check on Dad. Both times, I have seen her, she has been quite upbeat and friendly. The photo below is the of the surgeon and the man is on a fellowship with the doctor. This was the most upbeat and talkative Dad was all day, today.

He took another walk, which is encouraging. The doctor wants him to walk and breathe into a small box (where when you breathe a small ball moves. The object is to get the ball as high as possible).

Otherwise, not much has happened since a few hours ago...

Surgery: Status Update - 5:45 PM PT / 9.13.13

This is Caroline.

Not much knew has happened or changed since I last wrote, except my dad appears to be sound asleep. We are hoping he can sleep for a while, or at least until the next nurse arrives...

They did up the medicine he can dispense himself to double the amount (since he was not taking it enough as he should have been the past 24 hours), so I am convinced that is making him extra drowsy and sleepy.

I will post a final update later...In the meantime, it's Friday, and past 5:00 PM everywhere in the US (except Hawaii), so if you happen to be enjoying a beer or cocktail, I encourage you to have an extra for my dad...

Surgery: Status Update - 1:45 PM PT / 9.13.13

This is Caroline.

Pain is still quite high and he seems a bit out of it today. Per the picture I posted last night, that smile is definitely not on his face today. He did sleep somewhere between 2 - 4 hours last night; however, the nurses do not document this piece of data, so we do not know for sure the exact number of hours. I am in the room and he is napping at the moment.

Earlier, he was very slowly walking around with the nurse. They are trying to make him walk every so often. He also used the bathroom.

They have been encouraging him to take the medicine in which he can dispense; yet, he is hesitant at times because it makes him feel drowsy. He is taking the medicine. Per what the nurses are saying, he could probably be taking more.

He would like to have glass of water, but he cannot swallow anything until, tomorrow (Saturday). The only thing "food wise" going into his body is something with salt through an IV that has zero calories.

Surgery: Status Update - 10:30 PM PT / 9.12.13

This is Caroline.

A few updates:

• Pain was a word we heard several times from my dad. Per my earlier post, he is now hooked up to some powerful drug in which he is able to dispense to himself once every ten minutes (if needed). The amount is programmed into a machine and when he needs the medicine he clicks a button. The nurse assured him that there is no way he could overdose. The epidural that I also mentioned today, did not take, in which allowed him to feel much pain in his abdomen this morning. The anesthesiologist that was with him during surgery, stopped by this afternoon and confirmed that in fact the epidural did not take.

His surgeon also stopped by this afternoon and removed a few items...

• The catheter - An item that has been known to cause infections (specifically staph infections). They were going to give him a bucket type thing to pee in later tonight, so he would not have to walk to the bathroom the next few hours.
• The tube in his noise that was bothering him last night, was removed - He was quite pleased about this going away.

Additionally...

• His throat is still quite bothersome (despite some items having been removed)...the three main items causing the pain: nose tube (which was removed), breathing tube ventilator (in which was placed in his throat during the surgery), and a mini tube that is running through his neck (still in place).
• They helped him get out of bed (the first time since before surgery) and he sat in a big, La-Z-Boy-like chair that is next to the bed. He also spent approximately 4 hours total walking around the nurses station. He said it felt good to walk around for a few minutes at a time.
• Dad is very, very tired. Since post-surgery, he has received only 40 minutes of sleep. We left around 8:30 this evening, and he was hoping to get some sleep, tonight.

To lighten things up a bit, the nurse this evening mentioned, "I am glad he is making jokes, despite being uncomfortable and in pain!"

*Still, no visitors are allowed. Once I get confirmation that people can visit and that my dad is OK with people visiting, I will post a quick post, as I know a few of you have been asking when you can visit (I would be the same way). I have a hunch it will be late this weekend. Yesterday was the surgery and today/tomorrow the nurses want to ensure he does not get an infection. On top of that, dad is hoping to sleep most of tomorrow and perhaps Saturday.

Surgery: Status Update - 3:00 PM PT / 9.12.13

This is Caroline.

Dad is still in the CICU and the pain is in full affect.

The epidural is no longer working, so around 2:00 PM they gave him a new drug to help ease the pain. They were also going to let him get out of the bed for a few minutes, as he has been lying flat since the surgery started yesterday morning.

He is talking, but his throat hurts like 'heck.'  It sounds like there is one drug that after he takes it, it helps ease the pain associated with the sore throat.

We are trying to not make him talk too much, as talking makes it worse.

He also mentioned pain in his abdomen area, due to the movement of so many body parts and the overall surgery.

He is also very sleep deprived and has not slept since before the surgery, or I suppose during the surgery. The nurse comes in to check on him approximately every 45 minutes, and there are a lot of people (nurses and doctors) and noises, in the CICU area, and also the fact that he is on his back. He never sleeps on his back, so being on his back, alone is not comforting. He is looking forward to when he can move into a more permanent, quieter room. It sounds like within the next day or two the move will take place.

On a more encouraging note, one of the doctors stopped by this morning and told him the surgery went very well.

Will post another update this evening...

Surgery: Status Update - 9:45 PM PT / 9.11.13

This is Caroline.

We heard the doctor say CCU, it is actually the CICU where my dad will be until at least through tomorrow. 

After I wrote the last post, Paul, Martha, and I were able to see Sam/Dad.

He was awake, knew who we all were, and seemed very literate. We had been informed a while back that he would be completely out of it and would not be speaking. He showed us where he was in pain – The nurse was in the midst of getting an epidural ready. He has a lot of IV's in him (as expected) including a catheter to pee and feeding tube, to feed him. There is a tube in his noise that he said was quite annoying. 

He did not look swollen (as we had previously been informed) and much different, aside from several tubes, IV's, and about a 4-inch incision on the left-hand side of his neck. His face is a bit pale in color. The other incisions are not visible when simply looking at him. The nurse could not believe at how alert he was after this specific surgery. She said patients are rarely smiling, and talking a few hours later. 

Typical Quiring male, they needed to increase the length of his bed, as it was a bit short.

We stayed in the room for about 30 minutes, and then it was a shift change, so we went to the cafeteria in the basement and came back up around 8:00 and said good night. Martha stayed a bit longer than Paul and I.

So far, he is recovering well.

Surgery: Status Update - 5:30 PM PT / 9.11.13

This is Caroline.

The surgery was complete about 45 minutes ago 4:45 PM PT.

Paul, Martha, and I just met with the surgeon.
She seemed very upbeat and said everything went well, and that his body is responding well to the surgery.

He will be transferred to CCU within the next hour. He will be in the CCU for at least one day.
*No visitors are allowed at this time. We will let everyone know when people can visit. It sounds like it will be a few days before people can visit (they do not want to risk an infection).

We cannot thank everyone enough for your thoughts and prayers the past few months, weeks, today, and the next several days...

Surgery: Status Update - 3:30 PM PT / 9.11.13

This is Caroline -

The surgery began at 9:15/9:30 AM PT.
Mom just received an update from the operating room saying that everything is progressing nicely.

I believe there is around 2 - 3 more hours left.

Paul or I will post an update later this evening.

The Night Before Surgery

Sept. 10, 2013.

According to the instruction sheet in the mail, I am scheduled for: Laparoscopic Transhiatal Esophagectomy and Feeding Jejunostomy Tube Placement.  Say that five times really fast.  I just double-checked and all those words are spelled exactly like the instruction sheet.

Before going any further, I want to thank everyone who has wished me well, sent me email, called, sent a card, and told me that Martha and I are in their prayers.  I am humbled that so many good people are thinking about us.

The anesthesiologist just called me at 9:00 pm to go over what's going to happen tomorrow.  I could have used a lot less detail.  I'm going to get an epidural high up on my back that will provide good pain relief.  It will be in place for a few days.  I'll have many other wires and tubes, including a catheter through the urethra into the bladder.  I'll have an IV in my neck.  He went on and on.  Every time he used the words "discomfort", "some discomfort", etc. I chuckled and so did he.  I don't think I'll be chuckling when I am experiencing the discomfort.

We have to be at the hospital at 6:00 am.  I'll be put under a general anesthetic around 8:30.  Martha will have to endure the waiting room without the help of medication.  She will be joined by Caroline, Paul, and Kevin as the day progresses.  I hope they can keep each other in good spirits.  I am guessing surgery will take until 5:00 pm then an hour in the recovery room, then they wheel me into the ICU for the night.  Emphasis on "guess".

The anesthesiologist said that I will have a breathing tube (ventilator) during surgery.  They hope to remove it at the end of surgery, but there can be many factors that would make it better to leave it in until the next morning.  He emphasized that my family should not be alarmed if this happens.  As long as the ventilator is in, I'll be under full anesthesia.

For the last three to four weeks I have felt great.  I have gained enough weight that I've had to start watching what I eat.  Everything tastes great.  Well almost. I've started eating my usual breakfast of Fiber One cereal.  It doesn't taste that great.  Barbecue Rigs?  Great. Pizza?  Great.  Chips and salsa?  Great.  And finally beer has started tasting normal again, which is great.

I maxed out with worry and stress over the surgery about three weeks ago.  I think that numbed my brain so I'm not very anxious any more.  The human brain is amazing.  Talking to the Anesthesiologist made me a little anxious (I felt some discomfort) but even that faded quickly.  I hope I adapt as well to the actual circumstances.

Feeling Good, but Dreading Surgery

It has been 4 weeks and 3 days since my last radiation treatment.  I've really started to feel better.  I can eat almost anything, but some stuff (beer, pop) still do not taste right.  I split a beer with Caroline last night before the Timber's game that tasted good.  I was very optimistic, so I grabbed another at half time -- it did not taste so good.  Oh well.  There were six of us a dinner at Thai Orchid on Burnside (Zeiglers and Steinfelds).  We ordered a variety of dishes and they all tasted very good to me.

Last week Steve Z and I did our normal 2.5 mile walk at lunch every day.  It is getting easier, but I'm still pretty tired and sweaty when we get done.  I do get much hotter than I used to and way hotter than Steve.  I have not started swimming yet, hopefully next week -- I put the towels and swim gear into my car yesterday.

My brother Sherwood visited last weekend.  It was a great weekend, I was really glad he came.  Sherwood, Powel (my other brother), and I toured the Columbia River Gorge on Friday 8/9 and as part of that we drove up to Larch Mountain and hiked to Sherrard point, about 3/8 mile uphill from the parking lot.  I had to rest twice on the way and felt a little light-headed at the sun-drenched lookout area.  I think if I did the same walk today I would do much better.  Here we are at Sherrard Point (left to right: Powell, Sherwood, Sam).

Every day  surgery draws closer and I get more nervous about life after surgery.  I try not to think about it too much.

July 29 - Aug 2: Improvements, finally

I'm starting to improve.  It is incremental improvement, not dramatic improvement, but I can eat more foods without serious pain.  I rarely experience nausea.

There are still a lot of foods which hurt after I swallow until I swallow some water, room-temperature water. I'm still pretty sensitive to temperature.  Cold foods like ice-cream, ice water, etc., hurt to eat or drink.  One of the most bothersome problems is taste.  Beer just doesn't taste good.  I think the more complicated something tastes, the less likely I am to like it.  Fritos taste great.

Strength is slow coming back.  I walked at lunch with Steve Z every day at work last week (Steve S. joined us a few times).  The walk was about a mile.  It was hard and did not seem to get easier by the end of the week.  When I wake up I still feel really weak when I'm brushing my teeth, almost like I might keel over.

I've started to get more regular.  I think the constipation and abdominal cramp issues are over, thankfully.

Every week surgery looms a little closer (Sept. 11) and becomes more real.  Martha shares with me some of the stuff that's going to happen after surgery, different "stages" of eating from "nothing through the mouth", i.e., feeding tube, for the first 4 weeks, then pure liquids only (Ensure, Boost), then pureed "a little bit of texture", etc.  At each stage I have to gain some weight to get to the next sage.  I'm dreading it.

July 22-26, The Week After Treatment

As the doctors predicted, this has been the worst week, by far.  Monday (July 22) I woke to a profound sense of fatighue and exhaustion.  Much more intense and real than what had come before.  But this was minor compared to other difficulties.

My last radiation was Thursday, July 18.  My esophagus continued to get more painful every day after that.  I went into work on Monday and Tuesday morning, but had to leave around 11:30a Tuesday, as the pain was dominating my thinking.  My radiation doctor had prescribed a general pain medication which I began taking as soon as I got home (Lortab).  This made me pleasantly drowsy so I slept through the afternoon.

As the esophagus pain got worse, it seemed to make me more queasy and eating became impossible.  I would only force down enough calories in the evening so I would not have a headache.

Wednesday morning I had an appointment with my medical oncologist (chemo doctor).  As I drove over, I started having abdominal cramps.  He told me to take a liter of IV saline right then.  I also mentioned to him that I had not had a bowel movement since Friday.  So he had me get a stronger laxative, Miralax.  The nurse administering the saline IV told me you take Miralax every 3 hours until something happens.  I took it at 3:30p, 6:30p, and 9:30p and nothing happened, except I had intense abdominal cramps the entire time.  I finally called the office around midnight.  The doctor sleepily said to stop taking Miralax, rest, come in for saline IV Thursday.  I did not sleep very much Wed. night.

Thursday I went in for another IV and they told me to get a suppository and if that did not work, a bottle of Magnesium Citrate.  The suppository did not work.  Magnesium Citrate comes in a 10oz bottle and is a very strong laxative.  I was supposed to take 5oz and if nothing happened within an hour take the other 5.  I took both and about an hour after the second dose I one diarrhea BM and an hour later one more.  Then nothing till Thursday night, when I had 3 or so more diarrhea BMs.  I may not have slept at all Thursday night.

The nurse who explained the dosage of Magnesium Citrate also told me that constipation and abdominal cramping seemed to be the two most severe effects of chemo.

Cramping Explained?

Most of Wednesday, Wednesday night, Thursday, and especially Thursday night were dominated by abdominal cramps. These are very uncomfortable.  Add in esophagus pain and queasiness, and I am hardly eating or drinking anything.  I think around 4:00am Thursday night, as I lie there in pain, one fact hit me.  Both on Wednesday and Thursday, before getting the saline IV I had abdominal cramps, but after the IV, the cramps were gone.  Maybe a big contributor to the cramping was dehydration.  I got up right then and forced down a big glass of water.  I think the cramping subsided a little soon after.

Friday morning the diarrhea subsided and there were no abdominal cramps and I was drinking lots of water.  My esophagus still hurt and queasiness was still there.  I started making sure I was getting more nutrients.  A nutritionist had given me a bottle of Boost and Ensure, two high-calorie, high-protein drinks.  I drank one Thursday night and another Friday.  Martha bought me some more on Friday.

I tried to work from home on Friday, but after sitting in front of my monitor for about an hour, I got this bad pain in both my lower front ribs that made me stop.  I have no idea what that was, but it was not the first time it had happened.  I'd had it last Sunday also.

It has been a difficult week for me.  I think I may be turning the corner now.  I'm still weak and light headed and my esophagus hurts, but it doesn't hurt quite as bad.  I'm able to eat more normally.  Hopefully this next week will see a big rebound.

July 15-19, treatment done, effects in full force

The good news is treatment is finished.  No more chemo and no more radiation.

However, all the doctors have said that the 7-10 days after my last treatment will be the worst of the entire treatment time because all treatments are cumulative.  So far this is proving true.  Muscle fatigue, esophagus discomfort, queasiness are all worse this weekend than any before.  So far no cramping since my last chemo.  Knock on wood.

Muscle fatigue is an effect of chemo therapy.  Imagine a simple activity like picking up the newspaper off the driveway.  On Saturday morning when I did this, my stomach muscles felt as if on Friday night I had put a fifty pound weight on the driveway and then reached down and picked it up fifty times.  When I do anything physical, the fatigue feels like I exercised the involved muscles to exhaustion the night before.

All I think about is that around this coming Thursday I should start to turn the corner.  The effects of chemo should start to wear off and I should start healing. Same for the effects of radiation.

Of course there is still esophagectomy surgery looming on the horizon.  It is scheduled for September 11.  It is a major, major surgery and I am expecting the recovery from surgery to make chemo and radiation seem like a walk in the park.  One of my doctors gave me a link to a paper on Esophagectomy and Quality of Life, which gives a glimmer of optimism about life after surgery.