Sheryl Ann Scott's Cancer Journey

By Robert G. Scott

Part 1 | Part 2 | Part 3

Part 3: January - March 2001

4 January 2001

Sheryl is eating less and dropping weight again. She has headaches and "torso aches" her whole upper body is beginning to hurt. She keeps saying how she can't wait for Spring, when the weather is warmer and she can get outside and walk her dog. I hope Spring gets here soon, I wouldn't want her to miss it.

4 January 2001 (later)

Today started out much better! After her cup of Honey Flu and tea in bed, she got up and asked for bacon and eggs, toast and coffee. I fixed it and she ate it. If it still goes this well this afternoon, I'll be able to work this weekend.

7 January 2001

She's not any worse, and tries to eat. She said she was looking forward to going outside today the weather is supposed to be warmer. I'm staying home from work today, to keep an eye on her and clean up some. It's hard to work a twelve hour shift, plus cook and clean.

9 January 2001

Sheryl spends about 80% of her waking time bent over double, her chest on her thighs; it's the only way she gets relief from a stomachache. She also drinks about 3 or 4 cups of Theraflu a day. Yesterday she ate very little, and started vomiting again. Her next appointment is with the chemo doctor on the 11th. She asked me what would happen if he couldn't do anything for her. All I could say was that miracles do happen. I'm trying to resign myself to the inevitable.

13 January 2000

The doctor's visit went pretty well yesterday. For some reason (crush) Sheryl always perks up when she has an appointment with this one. When she woke up her stomach problems had disappeared and she ate breakfast. When we returned home she ate supper. She drank several cans of "Boost" supplement.

Her weight had dropped to an all time low 106 pounds from not eating. Her heart rate was up (The crush?) as well as her BP. He will try a second line chemo if she can get her weight back up; the next appointment is on the 18th.

18 January 2001

We see the doctor in a few hours. I don't think she has gained much weight although she has been eating; about the equivalent of one meal a day. She doesn't get much exercise though, so maybe it's enough. Yesterday she managed to do a load of laundry.

18 January 2001 (cont.)

She wasn't feeling well enough to go in today; upset stomach and spitting up, so I called and had the appointment rescheduled. I'm no longer pushing her into anything; it has been too hard on me, and it's really her decision.

24 January 2001

We made the appointment yesterday, and surprisingly Sheryl actually gained four pounds. Her doctor once again reiterated that there was nothing more that they could do for her, but he would give her another round of chemo - less intense - if she wanted. This would be conditional on her gaining weight and strength. I explained it to her in non-clinical terms, and she understood.

We came home to a clean apartment one of her sisters and a friend came over at 5:30 AM (before we left) so they could do it. The place was getting rather nasty, I work from about 5 AM to 7 or 8 PM, with a short break during the day for Sheryl and can hardly keep up with the dishes. I'm hoping the clean up will help her.

She changed the prognosis some when retelling to her friends and relatives she doesn't want them to know the real situation and wants to spare them. My attitude is different - they should be allowed to prepare.

30 January 2001

Sheryl is experiencing stomach pain again, and eating less. Yesterday she had a can of "Boost", some Pepsi, and half a bowl of Chicken Noodle Soup. Today she is aching all over. I'm now beginning to look forward to the end of it.

2 February 2001

Still not much change. The pain is intensifying, her stomach is still acting up, and she still doesn't eat enough. It's getting more difficult every day to watch and think.

5 February 2000

Sheryl allowed her pain patches to run out yesterday. They need to be changed every three days yesterday was the forth day. I saw that she was in more pain than usual and asked if she wanted them changed but she answered no. When she came to bed last night I asked her again, and again no.

The patches plus Tylox keep the pain to a nearly acceptable level, sometimes she allows it all to clear her system just to see if she really needs it. She does. The pain will not go away and neither will the cancer that is causing it.

I woke up at 3:00 AM this morning to hear her retching and moaning in pain. I put new patches on her back and she didn't object. I was going to go to work early today anyway I guess who needs sleep?

On a brighter note: one of her sisters and an old friend are in the process of organizing a party? dinner? get together? for her soon. They are inviting all her old friends, some she hasn't seen in several years. I think it is a good idea; too many people die without saying their last good byes. How often do people at a funeral say, "I wish I had told her ".

11 February 2001

Sheryl's pain is under control again, and she's eating. Her attitude is much better - possibly because she has another appointment with her favorite doctor next week. I still think she has a crush on him! The weather has been nice lately, highs near 70, and that might have something to do with it along with the pain being controlled.

17 February 2001

Back down again. Sheryl was up all night in pain; another "total body ache". She is continually getting weaker. She barely made it from the couch to the bed last night, very weak and dizzy when she finally made it. She can barely hold a cup of coffee with one hand.

17 February 2001

Sheryl didn't eat much today, part of a can of Boost and a turkey and cheese sandwich. She was too weak to make it on her own from the couch to the bedroom. She tried to stand and nearly fell she was so weak and dizzy. I helped her to bed and she lost the turkey sandwich.

I am again wondering what I am going to do when she is a complete invalid. I can't afford the co-payment on a hospice nurse - even a part time visiting nurse, and I can't afford to take more time off work. There might be a free program through hospice but I don't seem to have the mental energy to find out. I feel that I am running out of steam. I wake up around 3:30 AM, check Email and eat breakfast and I'm on the road by 4:30 or 5:00. I come home around 9 or 10 the check on her and then back on the road. If I hustle I can make $50 or $60 dollars by early afternoon (on a good day) and be back by 3:00 or 4:00 PM. If the day is slow, I'll get back around 7:00 PM. I then fix her something to eat, do dishes and laundry and try to clean up some. Bed by 9 or 9:30.

Thanks for being there so I can unload.

21 February 2001

We won't make it to the doctor's office today, Sheryl is too weak. I'll call in and cancel, and have her prescriptions refilled. She fell trying to get out of the tub this morning, I had to lift her out. I think she had a view of reality when she realized how weak she was, and she knows she won't survive this. This insight has occurred before, but then she would get a little better and think she was winning. I have to go to work today just like every day. I don't want to, I want to stay by her.

24 February 2001

She finally ate today the first time in three days. Half a cup of Jell-O Desert.

Her little dog, "The Booger", came running into the kitchen to get me a few minuets ago. I thought he wanted to go outside; he hasn't left her side in several days even to eat. Instead of running for the door he ran to the bedroom. Sheryl had fallen off the bed (no injuries) and couldn't get back on it. I took the opportunity to change the sheets. Good dog!

25 February 2001

One of Sheryl's sisters will be coming over tomorrow to be with her while I'm at work, and that will be a great help. Her brother stopped by today for a few hours and cheered her up a lot. He wasn't too cheerful when he left. I had tried to prepare him, but I guess nothing really prepares a person for reality. We tend to remember people the way they were when last we saw them.

Cognitive degeneration is beginning to set in, possibly a result of starvation. It's hard to live on ice water and a little ice tea, but that's all she can handle. She is starting to have auditory and spatial hallucinations; she has heard her grandson talking, as well as various random sounds. She wondered when I had rearranged the bedroom. It's hasn't changed in six years. Her short term memory is slipping as well.

Sheryl just called me back to the bedroom. She wanted to know why the paper towels were making noise.

26 February 2001 evening.

Cognitive degeneration is setting in faster than I could ever imagine. This morning she could talk, now (afternoon) she is unable to communicate. The first two or three words come out OK, like "Where is", or "I want"; but everything that follows is a meaningless jumble of nonsense sounds. This is terribly frustrating for both of us. One of her sisters came to day to be with her for most of the day while I was at work. She too was shocked and unprepared by how bad off she is. She did a fantastic job of house cleaning, and promised to come back tomorrow.

I just got off the phone with her doctor. He's going to arrange for a Hospice representative to contact me.

Every time I think it's gotten as bad as it can get, and I can't handle anymore it gets worse.

27 February 2001

People do survive esophageal cancer. Here is a link to one such person.

Sheryl is so much weaker this morning. Even with her sister coming over in the day, I don't think I can take care of her. She is getting very frustrated with her weakness and now with not being able to communicate. I promised her that I would see to it that she could die at home and not in a hospital, but when I made the promise I did not know what that would entail. I may not be able to keep that promise, and it rips me apart knowing that.

1 March 2001

Last night was bad, and neither of us got much sleep. Sheryl had a hard time breathing, and I had to help her with the inhaler several times. She spent much of the night crying and apologizing. She fell out of bed again this morning when I was getting a cup of coffee. I ask; no, I beseech her not to try to get out of bed but she keeps trying. I guess she hopes she will miraculously regain her strength.

I promised I would stay home from work today, because I'm a lease driver it will cost me $64. A couple of her family members forced some money on me yesterday so I can afford it. I need to, as I haven't been able to spend as much time with her as we need.

The hospital care coordinator called me a short time ago and said that the Hospice people will contact me this morning. The Hospice care is fully covered under our health plan, they will provide 21 hours of nurses aide care, unlimited nursing visits, a hospital bed, medications, and counseling.

2 March 2001 (morning)

The Hospice nurses showed up yesterday afternoon. I signed the papers and was briefed on what they offer. They tried to give Sheryl a cursory exam to confirm her state after I filled them in on her recent medical history and perceived state of health. They couldn't check much; even taking her oral temperature was stressful, so they didn't try to take blood pressure. The hospital bed will be delivered and set up this morning; it will help a lot. She will be in the living room and can see out the sliding glass door as well as watch a bigger TV.

After they left she spent several hours crying. The arrival of Hospice was the final confirmation of her impending death; she had been holding out a spark of hope and that is now gone. It might be a good thing, as she can now prepare herself.

I'm not overly religious, and this is driving me further away from believe in the traditional Judeo-Christian concept God and back toward the Hindu concept of a "Godhead". I cannot believe in a "kind and loving" God that has a direct hand in the affairs of man. Just in case I'm wrong, I'm beginning to wish that all those people who are praying for her to live would stop, and pray that her suffering would end.

2 March 2001

Hospice has come through. Sheryl now has a hospital bed with side rails and six-way adjustment in the living room. She can see out the sliding glass doors, watch the big TV, listen to a good stereo, and I can be in the same room with her 90% of the day. I turned the cab back in so I am unemployed again (but thanks to a couple of donations I can do it), I paid the rent, sent out the bills, renewed the cars license tags and my drivers license, and picked up her prescriptions. I now have no reason to have to leave for several days. I do have to take her little dog, "The Booger" to the vet for grooming Monday, but someone will be here and I won't be gone long.

The move from our bed to the hospital bed was very stressful for her, and she went to sleep quickly. We had two of her sisters, her daughter and her boyfriend, a nephew and niece, grand son and grand nephew here all at once everyone trying to be helpful. Half have left now, and those remaining are relatively quiet. I picked up a prescription for Atavan to mellow her out and it seems to be working pretty well. Now all we have to do is wait.

3 March 2001 - 5:30 AM

We both had a very quiet night, slept through from about 9:30 PM until 5:00 AM. She hasn't retched all night, never awoke from pain. I think the Atavan (lorazepam) and the hospital bed are a god-sent. The Atavan is a very strong tranquilizer in a very tiny pill. She doesn't even have to swallow it, as it will dissolve in her mouth without any bad taste. The bed allows her to sleep slightly elevated and it doesn't bounce when either The Booger or I roll over we have the couch beside the bed.

If anyone reaches the stage that care giving becomes difficult and the chances of recovery approach zero, do not do as I did and wait for the last minute to call Hospice. Don't wait until the patient is a complete invalid. I waited too long because it was admitting to myself - and telling Sheryl that all hope was gone. It was a very difficult call to make, but I am so glad I made it.

Hospice will send a nurse's aide Monday, Wednesday, and Friday to bathe and care for her. There is an RN on call 24/7 should anything happen. Volunteers are available if I have to leave for anything and a family member isn't here. It's as if a great weight has been lifted from me.

Just a note on the hospital bed: I have had this pathological fear of waking up to find my wife dead beside me. I doubt anyone wants to wake up beside a corpse, particularly that of a spouse and lover. I would sleep very lightly and come fully awake at any change in her breathing pattern, or when ever she would move. That was hardly conducive to a good night's sleep; then I would try to drive a cab in the city for ten or twelve hours while worrying about her. One hell of a strain, and a lot of (unnecessary) stress.

3 March 2001 - 6:30 PM

Sheryl has slept (or been comatose) most of the day. She has had a couple sips of water this morning, but refuses anymore. Her eyes no longer focus and appear somewhat foggy and glazed. Breathing is labored and shallow. Her little dog, "The Booger" has withdrawn from her.

4 March 5:00 AM

I went to sleep on the couch beside Sheryl's bed about midnight, listening to her harsh labored breathing. I awoke again about three and her breathing had changed to shallow and weak. At about 4:00 AM I could hear no more breathing. I checked with a stethoscope and could hear no sound; no bubbling or rasping or rushing, and no heart beat. She was cold to the touch and her eyes were milky and glazed.

I called the Hospice nurse, and she came over and certified her death. I called a couple family members and soon her friends and family were gathered.

Sheryl Ann Scott died in her home on March 4, 2001

She loves you, yea, yea, yea,
And with a love like that you know you should be glad.
      -- John Lennon

Part 1 | Part 2 | Part 3

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