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."

Treatment Anxiety: Fear of pain

On Thursday (June 13) afternoon Martha and I went to a "What to expect during Chemo" class.  The nurse told us about symptoms such as fatigue, hair loss, fluid loss, and others. I had not slept well last week so I was tired and more susceptible to suggestion.  As she mentioned some of the symptoms I thought "I think I have that right now!" (not hair loss yet, of course).  When the class finished I felt bad enough that I was going to skip my daily swim.  But she had also strongly recommended moderate aerobic exercise during chemo, so I decided to swim a few laps and see how I felt.  Turns out I felt great so I swam a whole workout and really glad I had not skipped.

That night around 2:45a I woke up to go to the bathroom and that's when the anxiety hit.  The chemo-expectation class had 7 or 8 cancer patients with some family members.  I am pretty sure the guy sitting next to Martha had the same diagnosis as me: esophageal cancer.  The nurse kind of said that and asked if we'd had feeding tubes?  He had one installed.  I had not.  At the time I figured that was good for me, "my cancer is not as advanced as his," I thought.  The previous week I talked to a swimming buddy who has had the same treatment I've begun.  His cancer was definitely more advanced than mine.  He talked about needing a feeding tube installed part way through chemo/radiation and how bad things got.  When Martha and I met with Dr. Dunst a few weeks ago, she also talked about a feeding tube, but at 2:45a all I could remember was "that a feeding tube might be necessary."  Earlier this same Thursday I met with a radiation oncologist and he had said that about 1-1/2 weeks into radiation I was going to start feeling pain when I ate/swallowed.  They would  manage the pain with "lydocain" (I think) which I will swallow to numb my esophagus so I can eat, but he also said after a while I'll need real pain medication.

At 2:45a my subconscious had assembled all this data and presented it to my conscious.  I began thinking about how bad it might really be and tried to figure how long the "really bad" period might be.  I've already been told that the worst period will be the two weeks after chemo and radiation are finished.  So I'm guessing the pain starts at week 1-1/2, ramps up day by day until it hits a maximum, then stays constant for the rest of treatment plus two weeks.  Treatment is about 6 weeks, so worst case of max pain is the final 4 weeks of treatment + 2 week after =  6 weeks.  Whoa!  This is when the anxiety, actually fear, set in.  How bad will this pain be?  Could it get so bad that I'll actually want a feeding tube installed?  Then it hit me that some doctors may automatically install feeding tubes in their esophageal cancer patients -- it must be necessary most of the time.

At this point other memories started popping up.  My chemo nurse, Rob, noticed that I'd lost 7-8 pounds over the previous 10-12 weeks.  That's good, right?  I've been dieting and exercising extra since January.  He strongly suggested that now was not the time to try and lose weight.  Some of the nurses at radiation told me "You look in great health for esophageal cancer treatment."

I pointed at the spare tire around my waste and said, "I feel in pretty good shape, except for this."

The both replied, "No, that's a good thing."

So at 3:00a my brain factors those comments into the mix and now I feel like I am finally realizing that I have a really bad stretch ahead of me.  I couldn't stop thinking about this.  Sleep went out the window.  Finally at 3:45a I got up, set up my laptop, and started working (at my job, I can work from home as easily as from the office).  I was able to successfully get my mind temporarily off the worry about this treatment, but it haunted me all day and all this weekend.  This (the haunting) was exacerbated Friday because I was pretty tired all day from lack of sleep.

Martha had a "grads and dads" dinner Friday night.  Our kids were there, except Zachary who is in Spokane working for the summer, also Martha's Dad and Amy, Paul's girlfriend.  I was glad they were there and I had a few hours where I did not think about this.  After they left I was pretty tired and slept well Friday night.

Saturday the anxiety came up again.  I talked about it with Martha -- it is good to have someone close at your side.  The anxiety levels have come down quite a bit from Thursday night.  But I would be lying if I said I'm not pretty concerned about how this is going to go.

June 13 - First Radiation Treatment

First Radiation Treatment

Radiation treatment  (for me) involves laying on my back on a table that slides in and out of a big ring.  The way I understand it, the ring contains five low intensity X-ray beams.  These beams are focused on the area on my esophagus and stomach around where the tumor is located.  Here's a picture of a picture they gave me of where they are aiming:

The purpose of radiation is to burn the tumor and surrounding tissue so they kill all the cancer cells.  We met with the radiation doctor, Dr. Hansen, last week.  He said that the cancer was barely visible on the CT Scan.    I took that to mean "it is a very small tumor" right now.  Yet look at the size of the area they are treating, drawn on my chest and belly.  That does not look small to me!  This includes the tumor as well as much tissue around the tumor and also lymph nodes around all this tissue.

My understanding is that for a cancer growth to be visible on the most precise CT scan or PET scan, it must have about 200,000 to 250,000 cells.  Any cancer growth that is smaller cannot be detected.  So they treat (i.e., burn) a big area around what they can detect, hoping to kill all the cancer cells they can't see.  Better safe than sorry.

Today I was on the table for about 20 minutes.  Some of this time was positioning me exactly according to the tattoos that they gave me a week ago:

From now on they said I'd be on the table about 10 minutes.

The actual radiation treatment is painless.  However, since they are burning my esophagus, around week 3 of the treatment, it will start hurting to eat.  They can give me something to swallow that will numb my esophagus so I can eat, but then that will not be enough and they'll prescribe pain medication so I can eat.  I can't wait.

June 12 - First Chemotherapy session

I've been dreading this for a while.  I feel like once I start down this path I'm committed.

There is a lot more to chemo than I thought.  The main chemo drugs I'm getting today are Taxol and Carboplatin.  The evening before they prescribed 20 mg of steroids and 20mg more this morning immediately after breakfast.  One hour before I was given a cream to apply to my chemo port to numb it.  That worked very well.

You have to wonder how they learned about all the extra drugs they give you to help with chemo.  Did the first chemo patients go through hell before they came up the helper drugs?

The chemo session was painless.  It lasted about 3hr 15 min.  The nurse said it would go faster next time since I did not show any problems with the two main drugs - they will pump it into me faster.  They have WiFi and I was working and browsing the internet the entire time.  It went pretty quickly.  During the time I was there I saw about 14 people also getting chemo.

Below the drug list is the side effects I may see.  Oh boy.

Symptoms, What to expect the next few days

Days 3-4-5 are the worst after each session. Example I'm getting chemo on Wed, which is day 1. 3-4-5, are Fri. Sat, Sun.

Day 2, feel pretty normal, little tired, not nausea. Friday start looking for symptoms:

1. Nausea
2. Constipation or diarrhea
3. Fatigue
4. Blood dripping out my eyeballs
5. Farts that stink so bad metal nearby begins to melt

Hair loss (Alopecia) begins soon, but slowly. They told me to use a softer brush. What's softer than "nothing"?

My Chemotherapy Drugs (June, 6, 2013)

Here are all the drugs they gave me through my port today.  You may be more interested in the drugs below the blue text than the ones above.

Title of the drug list

Carboplatin + Paclitaxel + XRT (Esophageal)

C1D1 Cycle Day Approved by Gruenberg, Daniel R., MD

Paclitaxel, inj: 120 mg (50Mg/M2) as directed by IVPB, Rate: over 1 hour

Instructions: Mix in 250-500mL NS. Administer using Non-DEHP-containing equipment and through an in-line 0.22 micron filter. Paclitxel is a vascular irritant (sbq: good to see that the substance they're injecting directly into my vein is a vein irritant\).  Aka, Taxol

Carboplatin, inj: 290 mg (2 target AUC) as directed IVPB, Rate:over 30-60 minutes

Instructions: Mix in 100-150 mL D5W or NS. Carboplatin is an irritant.

The two drugs above are the chemo therapy.  The drugs below help me handle the drugs above.  The helper drugs only last a short time (e.g., anti-nausea), which is why they also prescribed pills -- to take up the slack.

Palonosetron hcl, inj: 25 mg as directed I.V. (anti-nausea, Aloxi is the brand name) My nurse shot this into the drip line.

Dexamethasone sod phosphate, inj: (steroid) 10 mg as directed I.V. - calms down immune, so body received gives me energy, 3

Diphenhydramine hcl, inj: 50 mg as directed I.V. (generic equiv to Benadryl, anti-histamine). 2

Rantidine hcl, inj: 50 mg as directed I.V. (antiacid) Note: today we are substituting Famotidine, a generic equivalent)

Typically the Diphenhydramine and Famotidine are combined into one. Dripped at a rate — there's a pump.

Cancer Treatment Summary

Summary (as of July 7, 2013)

I've been diagnosed with esophageal cancer.  More precisely:

On my radiation chart:  T2N1 Stage IIB adenocarcinoma of the distal esophagus
As summarized by Dr. Grunkemeier:  esophageal adenocarcinoma in setting of Barrett's, preoperative stage T2 N0-1 M0, clinical stage IIA- B (where T=tumor, N=Nodes, M=Metastasis).

I believe the N0-1 and the stage IIA-B both represent approximate best guesses, that is, it is either N0 or N1.  These are guesses since surgery has not been performed followed by an detailed examination of tissue. I think Nodes means "lymph nodes".

The current best treatment is the trifecta of chemotherapy and radiation, followed by surgery to remove most of my esophagus.

I've been diagnosed pretty early as a result of periodic endoscopy's and some luck.  Most people are diagnosed when they exhibit symptoms, usually a tumor grows in the esophagus to the point where it interferes with eating.  I have no symptoms.  I have been on a schedule of getting an endoscopy every other year after I was diagnosed with Barrett's Esophagus in 2007.  It was a biopsy in my February 2013 endoscopy that found suspicious cells.  The doctor performing these endoscopies had me come back in May 2013. Biopsies from the May endoscopy showed cancer. There was also some bad luck.  Normally this cancer starts on the interior surface of the esophagus, where the food passes.  Mine apparently started a little further into the esophagus wall, so the biopsies taken during the February endoscopy did not catch it.

Timeline

Future

July 8, radiation #17/25 3:24p
July 9, radiation #18/25 3:24p
July 10, chemo #5/6 9:30a
July 10, radiation #19/25 3:24p
July 11, radiation #20/25 3:24p
July 12, radiation #21/25 3:24p

There will be 25 radiation treatments.  One every weekday starting June 13

There will be about 6 chemo treatments.

After chemo and radiation are finished there's a four week recovery period and then I'll have the surgery.  The surgery is major.  I am guessing the recovery from surgery will be long and difficult.

Past

2007

December: first endoscopy by Dr. David Grunkemeier - I am diagnosed with Barrett's Esophagus.  He prescribes Nexium which dramatically reduces acid reflux for me.

2011

January: second endocsopy (Dr. Grunkemeier) - looking better

2013

Feb 6:  third semi-annual endoscopy to check on Barretts, "suspicious findings that require close supervision"

May 9, Thursday:  follow up endoscopy, more biopsies in and around suspicious area. 

May 13, Monday: Dr. Grunkemeir calls to say "pathologist reports cancer", schedules EUS

May 22, Wednesday:  Endoscopic Ultrasound (EUS) by Dr. Douglas Shumaker.  Cancer confirmed.  Tumor too deep into esophagus wall to perform an endoscopic resection.  Referred for surgery, chemo, and radiation.

May 23, Thursday: CT Scan (had to swallow barium)

May 24, Friday: PET Scan, injected with radioactive sugar

May 28, Tuesday:  Met with Dr. Christy Dunst, surgeon, esophagectomy specialist.

May 29, Wednesday: Met with Dr. Dan Gruenberg, Medical Oncologist (chemo)

May 29, Wednesday: surgery (by Dr. Dunst) to have chemo port installed

June 3, Monday: Met with Dr. Eric Hansen, Radiation Oncologist

June 5, Wednesday: Radiation CT Simulation (more barium), small targeting tattoos.

June 12, Wednesday: first chemo

June 13, Thursday: first radiation (of approx 25)
June 13, "Chemo class" - what to expect.
June 14 - July 5: radiations and chemo on schedule.