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.

Getting Radiation (picture and movie)

I only have two more radiation treatments.  About 1-1/2 weeks ago I had one of the nurses, Melanie, take a picture and a video of the radiation machine with my phone.  Above is the picture.  That big round thing aimed at my left side is the X-ray source.  It rotates around me and stops 4 times to radiate my esophagus, a little bit of my stomach, and the surrounding lymph nodes.  The movie below shows it rotating -- be patient, it may take a few seconds for the video to load.

I wish I knew how to make the video bigger, but I do not.  I also posted it to You Tube, where it is bigger and better: http://youtu.be/mnsrAtCRuak

July 8-12: 4th full week: fatigue

I've completed 21 out of 25 radiation treatments and 5 out of 6 chemotherapy treatments.  All treatments finish up this coming week.

The fatigue that we chemo patients have been warned about hit me like a ton of bricks.  I felt ok Thursday and Friday, so I decided to swim Friday evening.  My goal was 25 laps, normally I do 45 laps (each lap is 50 yards).  I did 45 laps on both Sunday and Monday.  But on Friday, I was only able to get 20 laps in.  My arm muscles just felt too tired.  I was not out of breath or anything, just tired muscles.

Saturday morning when I woke, my arms felt like I'd just swam a huge workout, like 80 laps.  They were really tired.  This was from swimming.  Every little physical activity I did just wore me out.  In the morning I get the paper, fill a plastic watering can and water a corner of the grass that the sprinkler doesn't hit.  Carrying that water can felt like I was carrying a huge weight.  Walking up the stairs from the driveway back into the house with the paper made me feel tired.

Since I have one more chemo treatment, I am wondering how bad I'll feel next weekend?  I will definitely not exacerbate the situation by swimming!  Until I start to recover, my exercising is over.

Speaking of recovery.  My last radiation is Thursday.  My Radiation Oncologist says that 7 to 10 days after that last day, I will really turn the corner and start to feel better.  I can't wait!  My last chemo is Wednesday, but since the effects of chemo seem to be most intense Thursday evening - Sunday evening for me, I won't count chemo as being finished until next Monday.

On the cramps and constipation front, this week was not bad.  My doctor was quizzing me on my symptoms and what I was taking.  I had started taking a stool softener and stopped taking a laxative.  He said I should not have stopped the laxative.  Sure enough, I took the laxative Wed., Thurs, and Friday mornings and I had almost no cramping issues.  I did have a fair amount of mild nausea, but they'd given us anti-nausea pills when we started chemo and those did the trick.

7-10 days from this Thursday is July 25-28.  I am looking forward to turning that corner.

July 1-5, Third full week

Treatment so far: 4 out of 6 chemotherapy treatments, 16 of 25 radiation treatments.  I am pretty sure Dr. Hanson said the swallowing pain will max out after treatment 20, on Thursday.  Next weekend ought to be really pleasant.

This week is the similar to last week, most symptoms get a little worse.  Last week's worst symptom was cramping, which I attributed to constipation, a side effect of chemo.  This week, the day before chemo I started taking Durolax, an over the counter stool softener.  The cramping was way more subdued, so maybe it helped.

Swallowing food down my esophagus is getting more painful.  It feels like there's a tender open sore about 1/2 way down to my stomach and right at that point there is also an obstacle, something that makes the food linger on its way down.  I chase down many swallows with room-temperature water.

Eating is Not Much Fun

The queasiness, starting for me on the evening of day 2 after chemo, seems slightly worse this week.  Like last week I have this bad combo:  it hurts to swallow food, I'm queasy a few days each week, food doesn't taste as good.  What I want to do is not eat as much.

Three Pounds Lost: Concern

I met with Dr. Hanson (radiation) on Tuesday.  He was concerned that I'd lost 3 pound from the previous week.  Every Monday when I go in for radiation they weigh me.  This weigh-in is not very precise. I'm fully dressed with shoes on, etc.  I weighed 242 last Monday, which by the way is at least 35 pounds overweight.  He had me meet with the nutritionist again.  They both told me to eat.  The nutritionist said if I lost too much weight there's a surgically-installed feeding tube with my name on it.  She gave me (for the second time) a list of high-calorie recipes.  The focus is supposed to be high-fat, not so much carbs, but since the only measure is weight...  The "mac and cheese" recipe includes 1/2 cup mayonnaise and 2 cups grated cheddar.

I think they're making way too big of a deal over 3 pounds out of 245 pounds.  Maybe they're just being cautious.  I have been trying to eat more since Tuesday.  It is hard given all the effects of the radiation and chemo treatment (see above, Eating is not much fun).  I've stocked the pantry with my favorite snack foods, dry-roasted peanuts, potato chips, and ice cream in the fridge.  On the weekends we have a box of Cinnabons.  It must be hard to imagine, but I have to gently force myself to eat any of this, although sometimes the ice cream is soothing, for a while.  I was able to eat 4 or 5 pieces of my favorite pizza (Round Table) last night.  Normally I love the smell and the taste, but both were slightly off.  Fortunately, not so off that it was horrible.  Last night, I wanted to stop after the first piece, but given the pressure, I kept eating.

I am going to be upset if I loose my taste for these "foods" in a permanent way because of this treatment.  Normally I try, not always successfully, to avoid all the above.  But just knowing that if I have a pizza or some ice cream it is going to taste sooo good, makes the broccoli and Fiber One bearable.  Right now, broccoli and Fiber One are not edible.

June 24-28, second full week

I've had 3/6 chemo and 12/25 radiation treatments.  As I write this on Sunday June 30, I'm almost exactly 1/2 way through the treatment by all measures.

This week was fairly uneventful, but these symptoms have gotten worse:  fatigue, cramping, queasiness, taste, and swallowing pain.

Fatigue.  The tiredness that I've been hearing about from chemo is worse.  I noticed it this morning as I walked up the 14 steps from getting the newspaper.  My muscles all over just felt tired.  The thought of going swimming this evening (Sunday) makes me feel tired.

Cramping.  I had cramping on Thursday evening and again on Friday evening.  It was pretty uncomfortable, but I was able to get to sleep ok.  Both times, when I woke up the next morning the cramping was gone, but I felt a little queasy.  I am pretty sure the cramping is related to constipation, which was more intense this week than the previous 1-1/2 weeks.

Queasiness.  Since Friday I've had a constant, but minor, feeling of queasiness.

Taste. Starting yesterday I noticed that food isn't tasting the same and the change is not for the better.  So unless I'm hungry, the thought of the taste of different foods is not appealing.

Swallowing pain.  The swallowing seems to be transitioning from "there seems to be a small obstacle in the way" to "a slight burning sensation along with the small obstacle".  The burning sensation is more uncomfortable.

Add together the queasiness and the taste changes and I'm a lot less hungry.

Summary.  All along I've been told "the effects of chemo and radiation are cumulative".  So all these symptoms will get worse.  These symptoms are all making me uncomfortable now, with the cramping being the worst.  When I think about each of these symptoms getting worse over the next 2-1/2 weeks, wow.

PS: I met with a nutritionist this week.  She told me to start focusing on high calorie and high protein foods.  She said if I lose 10% of my body weight they'll put in a feeding tube.  I think my Radiation doctor said the same thing.  Basically, you have to eat, even though you don't feel like it (queasy, taste) and it's really going to hurt to swallow.

June 17-21, First full week

This week was fairly uneventful.  I had five radiation treatments and a chemotherapy treatment.  I feel a little weaker than I did last week, but not much.

I have finished 7 out of 25 radiation treatments and 2 out of 6 chemotherapy treatments.

This is me getting chemo.  One of the IV bags on the pole is part of my chemotherapy.  The other is just a saline solution.  If you look carefully you can see the IV tube going under my shirt under my chin - that's why the shirt is open so wide.  The chemo port is high up on the left side of my chest, not visible here.  They connect the chemo directly to the port without having to puncture a vein each week.

I'm starting to have swallowing issues.  Not horrible issues, but it's getting a little worse.  Kevin joined Martha and I for happy hour at The Stockpot on Friday.  I was hungry and ate too much too fast and suffered some for a couple of hours in the evening.  The rest of the weekend I was careful to eat more smaller meals.  That is working much better.  I am nervous about next weekend after five more radiation treatments and my esophagus is in a lot worse shape.

Recovering from chemo was just a bit harder this week.  I have chemo on Wednesday and so Friday is my "day 3", which is usually the worst day.  I woke up Friday and thought "I don't feel different at all."  I got ready for work,  ate breakfast, drove in, everything was normal.  The office is on the second floor, up two flights of 12 steps.  As I walked up those steps I could feel a small buzz through my muscles, arm and leg, that I did not remember ever feeling before.  Then I felt a little weird for a while.  But even so, Steve Z. and I did our normal 2-1/2 mile walk for lunch and I felt fine.  I think Steve is walking a little slower than normal to help me.

After I wrote the blog entry about anxiety I had crystalized a bunch of questions for my radiation oncologist on Tuesday.    I met with Dr. Sueng, who was filling in for Dr. Hansen who is on vacation.  Dr. Sueng was really friendly and pleasant.  I told him my concerns.  

I asked him, "how many Esophageal patients do you have per year, ballpark?"

He said "It is not a common cancer, six to eight patients a year."

I asked do they all lose weight because it gets painful to eat?

He said, "Yes, between 5% to 10% of their body weight during treatment."

This rocked me back on my heels.

I said, "treatment is only 6 weeks, right?  Losing 10% of your body weight in 6 weeks is not easy.  You basically have to stop eating."

He kind of nodded.

I told him I really did not want a feeding tube.

He said, "I do not like feeding tubes.  I'll try to help my patients so they do not need one."

But then he added, "but some patients develop a total aversion to eating, so what can you do?"

Obviously it is going to get really painful.  All I could think of is wow, this is going to be really bad.

Dr. Sueng basically agreed that it's going to be painful.  He told me about lydocain and pain medication.  He said for some of his patients they may stop treatment for a few days during week 4 and then continue on.  That can help some to make the last couple of weeks go better.  I just thought that would prolong the agony, but what do I know?

He told me, "try not to worry about 2-3 weeks from now.  Take it a day at a time."

Easy to say.

He also told me, about five times, "eat up."