Sheryl Ann Scott's Cancer Journey

By Robert G. Scott

Part 1 | Part 2 | Part 3

Part 1: February - September 2000

2 February 2000

We recently learned that my wife Sheryl has esophageal cancer. She has been handling it better than I, possibly due to a lack of information. The first thing I did was research the subject. What I learned was not encouraging.

I will be updating this as we progress, as much for my own personal therapy as to let others in the same position know what to expect. Not knowing is very hard to handle.

6 February 2000

She asked me why they wanted to do a CAT scan when they already have X-rays; I told her that it was to determine if the cancer had metastasized, and if it had, to find out how far it had spread. That is the moment that realization hit her. She had thought that she would simply go into the hospital for a few days, have half her esophagus removed, and it would be over. Death was only an abstraction.

9 February 2000

We saw the thoracic surgeon today, he didn't sound very optimistic - want's to start cutting ASAP. The surgery involves removing the entire esophagus and the upper part of the stomach. The remainder of the stomach will then be reshaped and moved into the chest cavity and attached directly to the throat.

There apparently weren't any signs that the cancer has metastasized yet, but no one will know for sure until the esophagus is removed and examined.

15 February 2000

We had a consult with the radiation oncologist today, very upbeat. Sheryl goes into the hospital on the 20th or 21st to start the chemo and radiation therapy. It seems there is a slim outside chance that the surgery might not be needed, but the side effects of this therapy are bad enough. She will be in the hospital for about four days for each chemo, and the radiation will be every day for about 6-8 weeks.

16 February 2000

The thoracic surgeon called this morning. The surgery, in conjunction with radiation and chemo, is necessary. Bummer. This roller coaster ride of optimism/pessimism does no good for the mind.

18 February 2000

Sheryl underwent an Esophageal Ultra Sound of the tumor and a biopsy of a lymph node to day.

The results of the biopsy won't be in for several days, but the ultra sound showed that it is a class 3 tumor - it has broken through the esophagus. The biopsy will show if the cancer has metastasized.

Every test seems to move her life expectancy further to the left of the bell curve.

She goes into the hospital next week to have a feeding tube installed in her stomach and a permanent IV put in her arm. Chemo and radiation start soon after.

22 February 2000

Today was a bad day for me. Sheryl is handling this far better than I am. Today at work the radio started playing oldie songs about death. I changed the station and another death of a lover song was playing. I started crying and couldn't stop. Boss sent me home very early. I didn't tell Sheryl why I was home early - she feels bad when other people cry for her.

I started thinking again. We've never had a real vacation together, in a dozen years of marriage; we had one weekend at Natural Bridge, VA. Great place and I hope we can go there again before it's to late.

The cure rate for esophageal cancer is 5 - 10%. 10% if caught early. Her's wasn't caught early. The average time remaining after discovery is 15-18 months. She will be beating the odds if she sees another birthday.

25 February 2000

Sheryl went into the hospital today to have a feeding tube and permanent IV installed. The tube had to be put into her duodenum instead of her stomach because the surgeon didn't want to damage what's left of her stomach - the good part will be moved into her chest when the esophagus is removed.

When she came out of the OR she was in a good deal of pain, and they said that she would be moved to a room when the pain was under control. I saw her in the room - the first time I had ever seen her admit to being in pain. She has a very high pain tolerance.

Hopefully she will be feeling better tomorrow.

26 February 2000

Sheryl is a bit better today, still phasing in and out from the morphine; but at lest she's more comfortable than yesterday. It hurts to see her with IVs and catheters, but she needs them. Doctors said she might be allowed to have a drink of water today. Small things to us, big things to her.

27 February 2000

Sheryl was feeling - and looking much better today. They did another MRI this morning, and discovered that she picked up a slight case of pneumonia from the surgery. One result of the abdominal surgery is that it hurts when she laughs. It was good to hear her laugh, even if it did hurt.

The doctors say she might come home tomorrow for a few days to rest up and kick the pneumonia before they start chemo.

28 February 2000

She didn't come home today. At about 4: 2000 AM this morning she starting vomiting blood. She had started hemorrhaging in her stomach. The Doctors worked on her until about 10:30 AM. She might be released tomorrow if the pneumonia is cleared up and her stomach is OK.

I, and her little dog, surely hope so.

She's home! Sheryl called tonight and told me that if she I would come and get her, she would be released. Needless to say I headed over to get her. We returned home about 11: 2000 PM, and her little dog - Booger, a Pomeranian - jumped for joy. She has a bunch of medications, and a kangaroo pump will be delivered today so she can be feed through a tube at night.

We go back in about a week for a reevaluation, and hopefully start the chemo and radiation.

29 February 2000

The kangaroo pump was delivered tonight - now she can get the nutrients she needs as she sleeps. Good thing.

4 March 2000

Sheryl goes back to see her doctors on Tuesday, 7 March for another evaluation; if her last surgery has healed enough, and her general condition is good enough, she can begin chemo and radiation therapy. Hope they can start soon, everyday without it is a day lost. It's getting harder for her to get food down her esophagus; now it's nearly all liquid.

I'm beginning to dislike the "health fad". Her doctors don't want her to eat any thing that's fat-free or low-cal; and no junk food either. I looked in several stores to find non-fat-free cottage cheese. She gets close to a thousand calories a day from the tube feed, but needs at least two thousand a day to maintain her weight. Everything seems to be fat free. Maintaining her weight is not as easy as it sounds.

7 March 2000

I took Sheryl back to the hospital today to have the staples removed from the last surgery. Her doctor decided to admit her and start the chemo and radiation therapy today. Praise the gods, as every day delayed is one more day for the cancer to grow and spread.

8 March 2000

Her first day of chemo went pretty good - no apparent side effects at all. The next two or three days will tell how she handles it. The radiation therapy starts tomorrow.

9 March 2000

So much for an easy chemo. She spent the night vomiting, it started when they introduced a painkiller (hydrocodone) into her feeding tube, and she didn't get much sleep. She started radiation therapy today, and now has a splitting headache as well as the nausea. When she gets home, there will be some pot waiting. I've talked to a lot of people who went through chemo, and marijuana is the best anti-nausea drug known to man - but it seems to have a very terrible side effect that keeps it illegal. Not only does it gets rid of the nausea and stimulate the appetite - necessary for cancer patients, but it actually makes them feel good! We can't have cancer patients using a drug that makes them feel good. Screw the feds!

10 March 2000

Sheryl was chipper this morning. I checked and she didn't touch her breakfast - except the juice - and she barfed up yesterday's supper. Thank god for the feeding tube.

Good news! She might come home tomorrow! Her last chemo is today, and tomorrow I get with the doctor and discuss me administering the chemo at home (I hope) myself. The Naval Medical Center Portsmouth is a great facility, and I have no complaints whatsoever; except that I can handle the IVs and feeding tube better than the staff. I have a vested interest, and while I have no "RN" or "MD" behind my name, I am not unskilled.

11 March 2000

Oh well - coming home was a definite "maybe". It seems someone miscounted the bags of floro she received - she needs one more. She will most definitely, maybe, be released tomorrow for a while. She will then go in every day for radiation. Fun, fun.

Her blood work and other tests have been comming back OK - the chemo has not been affecting her liver, kidneys, etc. The cancer has not spread. She is moving to the right side of the bell curve!

13 March 2000

I brought her back from the hospital at 2:30AM this morning. We went back for radiation therapy at 1:00PM today - well, she IS back, and her little dog is estatic, as am I.

16 March 2000

Thank god for weekends. Her radiation therapy is Monday - Friday with weekends off, and she needs a break. She is always tired and has no energy. Sheryl vomits every morning around 3:00AM, and this morning it was mostly blood.

Next week she gets a new MRI to compare to the last one. Hope that tumor's shrinking!

19 March 2000

Sheryl's doing great today, no vomiting for two days. She was feeling good enough to do some house cleaning - it was almost like the old (PreCancer) days!

20 March 2000

She saw the chemo doctor after the radiation therapy today, another set of blood tests - everything came back fine, no peripheral damage from the therapy! She goes back in for another week of chemo on 3 April. Sure hope this goes as easy as the last one.

26 March 2000

Weekends are great - no therapy and she gets a chance to recover from a week's worth of radiation. The only side effect she has is the fatigue, and by Friday she's pretty well worn out. Saturday she recoups and Sunday she feels almost normal again. She hasn't been losing any more weight; in fact, she actually gained about five pounds.

Sheryl has been following the doctor's orders to the letter - no "alternative medicine" or desperate measures.

5 April 2000

This round of chemo is not going as easily as the first. She has been up most of the night vomiting. Her doctor ist trying other anti-nausea drugs to find one that will work. Yesterday she was red and somewhat swollen. That has gone away for now.

7 April 2000

This round of chemo is not getting any better. She seems to have aged about ten years in the last three days. Her hair is thinning rapidly - not falling out in clumps but thinning; where the hair at the pony tail tie was about two inches thick with a tight tie, it's now about half an inch thick with a loose tie. You wouldn't notice that she was loosing it if you didn't know her. Her chemo doctor has decided to wait a month before starting the next round instead of two weeks to give her a chance to recover. It wouldn't do to die from the cure.

9 April 2000

She was released from the hospital about 9: 2000 last night. Hard radiation burns front and back, hair much thinner than before (she happy that she doesn't have to shave her arm pits now!), dark bags around her eyes; but - happy to be home. Her little dog was jumping around in circles when he saw she was back. She vomited several times last night, but it should last only a couple days. Her doctors think the tumor is shrinking faster than expected.

12 April 2000

Sheryl will have two or three more chemo sessions and a major surgery ahead of her, but so far so good. Without the radiation, the chemo will go easier.

18 April 2000

Today is her last radiation treatment. She vomited several times last night, and has been in considerable pain the last few days. Hopefully she'll be feeling better when the effects of the radiation subside.

23 April 2000

Sheryl is still in a lot of pain. She has been unable to eat for nearly a week; even trying to drink water is painful. Thank God for the feeding tube and pump. We see her chemo doctor tomorrow, maybe he'll be able to help. Her pain medication (Tylox) isn't very effective. Maybe there will be something stronger they can prescribe - but I'm doubtful. Thanks to our "War on Drugs" many doctors are afraid to prescribe, and as this is a government hospital and doctor, they might not even carry anything stronger. I'll find out tomorrow. It hurts me to see my wife in continual pain.

24 April 2000

My fears were for nothing. Sheryl now has liquid morphine that I can inject through her J tube. It helps considerably - for a short time. The Tylox will keep the pain down on a continual basis, and when the pain flares, the morphine can knock it back down. It's not for continual use like the Tylox, but it's good to have when needed.

Sheryl's father died this afternoon. She was devastated. I hope it doesn't have an adverse effect on her recovery.

4 May 2000

Sheryl has been pretty much depressed the last week and a half. Between her father's death and the tumor, she hasn't eaten much so has lost another 5 pounds. A good day of eating means a small cup of pudding - but it only happens every other day or so.

We saw the chemo doctor today - he'll put her back in the hospital Monday for another chemo session if today's blood work comes back good. The nutritionist told her that if she didn't start eating, she'd be on the feeding machine 24/7 for the rest of her life. She came home and ate a cup of Jell-O. There is pain when she eats and food tastes different - but she has to eat! I get tired of her bitching about my nagging her to eat, but I'm not about to stop - until she starts eating again.

5 May 2000

I was reminded today that Sheryl's chances are really pretty bad. The cure rate is 5-10% for her cancer. We have been optimistic of late, but she told me today - on the way in for another CT scan, "I hope the scan shows the tumor's shrinking". By the gods, so do I! After everything she's gone through, to have the cancer take her

We don't often dwell on it. If her time is limited, why spend it in gloom? Why not enjoy what's left? She has been criticized for not weeping and wailing about having cancer - what good would it do? Enjoy life while you can, no one knows when the end will come. No one has yet to get out of life alive.

8 May 2000

Sheryl's back in the hospital for her third chemo session. She wasn't very happy. The first session went pretty easy, so her thoughts when starting the second were along the lines of, "well, I'm stuck here for a week, and I don't like hospitals, but it will make me better and it doesn't really hurt." The second session kicked her butt. This time her attitude was, "A week of chemical torture! I hate hospitals! I don't want to go!" But of course, she had no choice.

11 May 2000

Sheryl was looking rough this morning. She had vomiting and diarrhea all night, so she got little or no sleep. She has four IV running. We are both looking forward to Sunday when I can bring her home.

12 May 2000

I set by her for about an hour this morning - she was sleeping; the first sleep she's had this week. I wasn't about to wake her up, so I left a note and went home. Her little dog, "The Booger" still avoids me - I'm the one who takes her away and doesn't bring her back for a week. All he does is look at me and growl.

14 May 2000

Sheryl was released from the hospital this morning! Her little dog and I are ecstatic, although I admit I enjoyed the rest. My arthritis is kicking my butt lately, and I should break down and get a few joints replaced - as soon as Sheryl's cancer is resolved. I'm going to have to ease up on waiting on her hand and foot - she needs to move around more, and I need to give the feet, knees, hips, and back a break.

20 May 2000

She is feeling much better the last few days. She thought that using the feeding tube was making her vomit at night; it would start about an hour and a half after the pump was started, regardless of when it was started. When she first started using the pump she was vomiting at night, and I cut the feed back from 120 ml/hr to about 90 ml/hr and the effects eased up. This time I had cut it back to 50ml/hr - meaning she was hooked up for 16 hours a day. She was still nauseous and vomiting. She finally refused to use it at all for a few days - to give her system a break. It worked, no vomiting. She is even eating real food now, but not much - about 500 - 600 calories a day, not enough to sustain her weight. One Taco Bell salad lasted a day and a half.

I'm now glad she was over weight when this started - if she had been at her "ideal weight" of about 130 lbs., she would have died some time ago. She's lost over 50lbs. so far.

25 May 2000

Sheryl's last CT scan showed good. The tumor is shrinking and hasn't spread. All her other organs are doing fine. She starts her next chemo session is on 5 June.

2 June 2000

Sheryl decided to get her hair cut tonight. She has lost more than half due to the therapies, and it was quite thin, showing scalp through the hair. She was shedding hair all over the apartment too. It looks good now, about ¼ inch long and tapered and trimmed properly (I did it myself). The thinness isn't that noticeable now, and it looks rather sexy!

7 June 2000

Sheryl reentered the hospital Monday for her 4th chemo treatment. The potassium she's getting burns, both oral and the IV form. She's not feeling much of the effects of the chemo yet, but It'll probably start tomorrow. She can't eat; nearly everything she swallows stops when it hits the tumor constriction and, after causing a lot of discomfort - comes back up. Her stomach is burning from the ulceration again, maybe because the hospital schedule for the prilosec is not the same as at home.

10 June 2000

Sheryl's doing OK on this chemo session, and I should be able to bring her home this afternoon. It hasn't knocked her down as bad as the last one, possibly because she has not been using the feeding tube.

19 June 2000

She's been home from the hospital a week now. The first few days she was still sick every night, and has used the feeding tube only two nights so she is still losing weight - to much weight. The pain seems to be more intense then before and that interferes with eating. She doesn't like to use the morphine because it makes her sleepy (oh sweet Morpheus!), but she will use it with a lot of nagging. There is a procedure similar to balloon angioplasty that can be used to expand the esophagus. I hope it can be used in her case - it will help her to eat. I can see why she wouldn't want to eat, even it not doing so means starving, when every bite she swallows is painful.

26 June 2000

It seems Sheryl has given up. Yesterday was typical. She got out of bed about 9:30 AM and set watching TV. I asked if there was anything I could fix her to eat. She made a sandwich, ate a few bites - and puked it up. She had a swallow of "Boost", and puked it. Her total consumption for the day consisted of a handful of potato chips. I asked about the anti-nausea pills she is supposed to take (I haven't had to refill them in a long time). She won't take them because they don't work well enough.

I set and watch as she slowly starves.

9 July 2000

She entered the hospital on the 5th for what will be her (hopefully) last chemo session. She was dehydrated and her electrolytes were way off. Sheryl still can't tolerate the feeding tube at night, and the only food that will stay down is soup and Jell-O, and this is not enough for her to gain any weight back. I pray (as can you) that she can somehow gain enough to be able to handle the surgery in a couple of months.

27 July 2000

Sheryl is back to using the feeding tube at night, about 5 2000 calories on a real slow feed. She hasn't vomited in several days - the effects of her last chemo are wearing off. She does have one more chemo to take and will be entering the hospital again on 2 August. I'm hoping she will get to where she can tolerate a full 1 2000 calories a night on the feeding tube - that with what she can eat will allow her to gain some weight back - God knows she needs it.

20 July 2000

I started this as much to show the effects of the cancer on me as on my wife, and I seem to have neglected that portion of the page. Here goes:

I miss my wife. Oh, she's still here, in body only. She is so weak she can't walk down the stairs without stopping to rest. She is in pain, even with the morphine and codeine.

I miss going out with her for a beer.

I miss going out with her just for a ride.

I miss going out to dinner with her.

I miss holding her. I would love to be able to give her a hug, but it causes pain. I would love to make love to her, but that is out of the question.

I miss my wife.

I miss her sense of humor.

I miss her smile.

27 July 2000

Sheryl is back to using the feeding tube at night, about 5 2000 calories on a real slow feed. She hasn't vomited in several days - the effects of her last chemo are wearing off. She does have one more chemo to take and will be entering the hospital again on 2 August. I'm hoping she will get to where she can tolerate a full 1 2000 calories a night on the feeding tube - that with what she can eat will allow her to gain some weight back - God knows she needs it.

27 July 2000

She hit the one thousand calorie mark today!!!

6 August 2000

Sheryl actually gained some weight, up to nearly 120 lbs.! She still can't handle more than about 750 calories from the feeding tube at night, but she's eating another 5 2000-1 2000 calories during the day.

I picked up a Chinese take out order for her a couple days ago. Sesame Chicken. So far, it has been three meals, with about three more in the freezer; from ONE serving. She can't eat much at one time and she only eats twice a day - but she IS eating again.

15 August 2000

Almost like the old days. Sheryl had to energy to get off the couch and do some light housework. She cleaned the bedroom - dusted, changed the sheets, cleaned the mirrors, etc. She hasn't been able to burn that much energy in a very long time. Maybe now she can start getting some muscle tone back.

16 August 2000

We just returned from the doctor's. He doesn't think Sheryl needs another chemo treatment, but will have the tumor board evaluate her after another CAT scan. If no more chemo is needed, her next hurdle is the surgery.

She still has a surplus of energy! She walked her dog to day when we returned!

27 August 2000

The closer we come to the end of this journey, the more it seems to affect her. She is, for the first time, beginning to really worry. The CT scan on the 30th will be the most meaningful - if the tumor has shrunk enough she will have her surgery soon, if not - more chemo. Neither is an option to look forward to. The chemo is extremely unpleasant and the surgery is extremely dangerous; there is a 1 in 5 chance of dying on the table, and the recovery won't be very pleasant. Major trauma.

I know she worries about it, and she is taking it out on me - and her dog. We both put up with as much as possible. The end of the road is near, a person (or a dog) can handle nearly anything if they know it won't go on forever.

7 September 2000

There is one aspect I haven't discussed much. The chemo treatments brought on an early menopause, and there are some uncomfortable effects. People are aware of the "hot flashes". The name doesn't come close to describing the symptom. She will be comfortable in bed, get hit with a hot flash and suddenly - with no warning - throw off the blanket and sheet, complain about how hot the room is, and toss and turn. The room temperature might be 55 degrees, she'd still swear the room was hot. When this happens, I gladly take the blanket and wrap up in it. There are also "cold flashes". These are the same as hot flashes, except she swears the room is freezing, regardless of the temperature. The worst effect (from my point of view) is her absolute lack of any form of a sex drive. Oh well, it won't last forever.

Her next appointment is with the surgeon, that's scheduled for the 15th of this month.

15 September 2000

We saw the surgeon today, and learned the results of the latest CT scan.

Sheryl has two spots on her right lung.

Surgery is scheduled for 2 October 2000.

30 September 2000

Her surgery is now just two days away. I don't know who is more frightened by it, Sheryl or me. It's difficult not to think of. She doesn't want to go through the pain and agony of the recovery, and she definitely doesn't want to die on the table or as a result of complications. The same goes for me. We also know that without the surgery her chances are just about zero.

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