Diagnosis and Disbelief

It was right around June 30, 2000 when we got the final diagnosis. I can't recall the exact date as there were so many devastating dates to come in the months to follow. After a barium swallow and an upper endoscopy, it was confirmed. Dad had cancer of the esophagus (or esophageal cancer as its called, we didn't know).

First of all, how could that be? Dad said he felt really good, as good as he ever had. So what if he was having trouble swallowing, how on earth could that be such a big deal? Second of all, what the heck was esophageal cancer and how serious was it (although we realize all cancer is serious)?

We scoured the internet for any information that we could find. That turned out to be a not-so-good idea as all the information we read presented the"worst case senario", which scared us to death. Equally distressing was the alleged link between heartburn (which it seemed Dad always had) and esophageal cancer. Rod and I joined an esophageal cancer group on the web. And that's how we found (Cathy's EC Cafe), and let me take this minute to tell you finding it was a mental lifesaver for me. I encourage anyone who is interested in EC information to visit this site. We signed up for their EC-Group listsev, the esophageal cancer online mailing list in which we exchanged messages, sort of like a message board only the posts get mailed to you. They were (and I'm sure still are, although the names from our time have changed) the most generous group of people to share their experiences, help you understand what was going on (because we were all going through it whether it be cancer patient, family, and/or caregiver), tell you what to expect, explain their treatments, make suggestions, and on and on and on. They were a godsend. I think they've added on EC-Chat now, which is awesome.

We soon learned that Dad's cancer was very serious. He first trouble swallowing began around the end of May (believe it or not when he was in Columbus, OH for the funeral of his oldest sister who succumed to breast cancer) and he was already diagnosed by the end of June (thanks to the quick and correct diagnosis of Dr. Don Chaffin of Martin Co. and also to Coach Jim Matney, then Sheldon Clark High School football coach, for recommending him). We had a fight for Dad's life on our hands and we were going to give it every thing we had.

And so we begin......

The Journey Called Treatment...

Here was our situation...

There are four of us, Courtney and I live in South Williamson, KY and Rod and Tommy live in Lexington, KY and Richmond, KY respectively. Dad's doctors were going to be in Lexington but he lived here. So our responsibilities were already divided for us, Courtney and I would take care of Dad when he was home and Rod and Tommy would take care of Dad when in Lexington. Dad would live with Rod and his wife Linda during his treatment. And Mom, who, as usual, did whatever she could, whenever we needed her. We would not have been able to provide for Dad as we did with out her; and also without Rod's wife of only 5 months, Linda. Linda took on the task of caring for Dad, full-time, while he was in Lexington; and had to put up with all the rest of us invading on the weekends. I will be forever grateful for how good she was to Dad, she couldn't have been any better to him if he were her own Dad and I will never forget it.

Anyway, Dad got his doctor lined out in Lexington. His oncologist would be Dr. Russell Eldridge, affiliated with Central Baptist Hospital (a place where we would become very familar with). If I recall correctly, Courtney took him to his first appointment. In general, we all took turns going with Dad and usually all of us were there for the "important" things, i.e. PET scans, CT Biopsies, test results, and any other time we could make it. But one of us was always there, Dad never went through any appointment alone. That was very important to us that he not be alone and that we were actively involved.

Dr. Eldridge followed up with more tests of his own, one of which was a PET scan. The way it is is that you have a test wait a week for the results, have another test because of those results and wait another week for more results and the eventually you have a diagnosis. Back to the original topic, PET scans were a fairly new procedure in 2000. He we went; me, Rod, Linda, Courtney, Tommy, and Dad, prepared for a long day at the doctors office. We packed books and crossword puzzle and Rod and Tommy were going to get oil changes but we were out of there in no time. They took Dad right in and explained to all of us how the procedure would work and showed us the PET scanner and told us what was going to happen to Dad. How ironic is it that when you have a CAT scan you have to drink that awful stuff, but the stuff that makes a PET scan work is made of glucose and they give that intraveinously. Go figure.

Based on the results of the PET scan Dr. Eldridge ordered a CT biopsy of one (or it could have been more) of the suspicious spots that showed up in the results. The CT biopsy was schedule very early one morning. We had to have Dad at the hospital by 6:00 am. We were there, the staff was not so we waited. It didn't take them long to get in and they took Dad right in. We could go in with him until he was almost asleep. They had given him some type of pill to enduce sleep. You know sometimes humor finds you in the weirdest places, but we were asking Dad if he needed anything because we were going to run out. Socks was the answer, blue...black........and brown....................socks. It took Dad forever to get it out and his speech was very slurred. The pill was working as planned. We were cracking up at him. But when he was back (after the CT biopsy) and awake again, he had new blue, black, and brown socks.

Anyway, the results provided our first real scare after the original diagnosis. Dad's cancer was not localized, the "hot spot" that they biopsied showed cancer cells in his celiac lymph node. Dad was stage 4 (read more about staging), we were devastated and scared to death. But we composed ourselves and got right back up for the fight, Dad included. He was so brave during his whole ordeal, better that we were to say the least.

Eventually the conclusion was that Dad's treatment would include both chemotherapy and radiation; which, in turn, would lead us to a Radiation Oncologist. One of the worst days of my life was the first visit to the Radiation Oncologist (I don't even remember his name and don't care to ever find it out). We were all there, me, Rod, Courtney, and Tommy, and of course, Dad. I can't even begin to tell you what happened in that doctors office that day. All I heard was "there's no hope", "there's nothing that can be done", blah, "make him comfortable" blah, "so he can at least eat" blah, blah, blah. I remember running to the bathroom, sobbing so hard I couldn't get my breath and so sick I was ready to throw up. So much for bedside manner.

When I finally got ahold of myself (if you call it that), it had been determined that Dad would undergo 6 weeks of radiation, Monday - Friday, no weekends, no holidays. Dr. Eldridge scheduled chemo to compliment the radiation therapy, 2 rounds one over the first week and one over the last week of radiation. Dad's chemo regiment consisted of two days of cisplatin followed by wearing a "fanny pack" for 96 hours that continuously dispensed Fluorouracil, shortened to 5fu so people can pronounce it I guess. One other thing happened, the original radiation oncologist (Dr. No Bedside Manners) transferred from Central Baptist and Dr. Alan Beckman took over his radiation treatment. Dr. Beckman was a blessing to us during Dad's treatment, in contrast he was Dr. All Bedside Manners and we were (and are) thankful for him.

The immediate goal was to shink the tumor in the esophagus and stop the cancer from growing, surgery to remove the tumor was looking doubtful. Regardless, something had to be done because if Dad wasn't able to eat soon he would die from starvation before cancer. At Rod's wedding in March 2000 Dad weighed around 280; by the time he started chemo in late July he had lost about 50 pounds. He simply couldn't eat. Linda chopped, grated, puree'd and everything else to no avail. Somedays Dad couldn't even swallow his own soliva. That's how bad it was.

My birthday is July 20th, and all of us were at Rod's house that weekend and were going to celebrate it there. We were all hyped up about going out to eat when it hit me, Dad couldn't go eat, he couldn't eat period. I cried my eyes out (not because we wouldn't be going out to dinner but because of the circumstances of why we weren't). I suggested that we stay home and order in. It was one of the best birthdays of my life and the last one I would spend with my Dad. I remember he called me early that morning singing "Happy Birthday". His dinner consisted of pureed meatloaf (with lots of ketchup to liquify it) and mashed potatoes and gravy. He might have eaten 10 small bites. Dad started his treatment right after that.

He endured treatment really well, or at least as well as could be expected. Of course, they have drugs to treat cancer and drugs to offset the side effects of drugs that treat cancer, and drugs to minimize the side effects of drugs that offset the side effects of cancer. You get it, and on and on and on. We started out with something to relieve nausa brought on by the chemo and something to coat the throat to help with swallowing. That's when we entered the world of white blood counts, red blood counts, creatin levels, PICC lines, etc. Dad's main effects from the chemo and radiation were bad taste in the mouth, weakness, burning in his chest and hair loss; one minute it was diarrhea the next it was constipation. Not really too bad considering.

Of course, at first he still couldn't eat and was getting weaker each day (not life-threatening weak but weak). While in treatment doctors don't do diagnostic tests (we expected them to test every day to see if anything was working but realistically it doesn't work that way) they only tested to lead them through the course of treatment, or at least in Dad's case this is how it worked. They told us that the chemo and radiation could work up to a month after it was over and any testing would be after that. My lord, it was an intolerable wait; we were so hopeful.

Dr. Beckman would tell us what he was seeing in the CT Scans as he adjusted his area of radiation. From all indication, Dad's system was responding to the treatment very well. In fact, after one of the last CT scans dad had during radiation Dr. Beckman said the tumor was barely visable and we were ecstatic. We could tell to as with each passing day Dad's swallowing trouble eased up, not meaning that it went away only that there eventually were times when he could actually swallow. Finally, it stayed some better and he could, at least, get some food down. Dad was like a kid at Christmas when he was finally able (after about 4 months) to take a drink of Pepsi. He said it burned all the way down but was the best Pepsi he'd ever had. We were so happy for him and while he could eat, we got him anything and everything that he ever mentioned. Dad loved cornbread mixed in milk, well all I can say is "thanks to Food City he got plenty of it". Until you go through something like this you really forget what the most meaningful things in life are; to us right then, it was Dad getting food down with little or no trouble.

I don't really remember all of the exact dates surrounding Dad's course of treatment which included both chemo and radiation, but it was around 9-10 weeks beginning in late July and ending around Labor Day. But eventually the treatments were over and Dad could go home for a while. In about a month he would go back for tests to determine where he was at then.

Like I said above.....

The Intolerable Wait...

First, I want to make it clear that chemo and radiation treatment are no breeze by any means. But the real hard days were yet to come. We could not have imagined the up's and down's we would go through.

 Dad got to come home over Labor Day weekend. He was going to stay with Johnny and I until we could get everything ready for him to move into his place. (Actually, his place was going to be my place across the street from Mom's house where we could easily take care of him and he could maintain some sort of independence.) We previously decided Dad would give up his residence (he was renting) when he found out he would be in Lexington for about 10 weeks. We really didn't know what to expect and nobdy was living in my house.

 The day Dad moved in was a great day. One of my most precious memories is of the night before. We had been up there working and decided to stay the night. We hadn't moved the furniture in so we slept on air mattresses. Can you picture me and Dad, each with our own air mattress, with the television in the floor between us? It had to be comical, and I wouldn't trade it for the world. Anyway, we get up the next day and start moving stuff in. It was a nice, comfortable, sunny day. Dad was going through his boxes and the first thing he did was hang his pictures, diploma's, and other such things on the wall. Seven years later they are still hanging there (sorry, I digress).

 Nonetheless, for the time being Dad was free. Free from doctors, free from chemo, free from radiation, free from hospitals, free from tests, but not free from drugs. But it also marked the beginning of the "wait". We were still taking the anti-nausea medicine, the medicine to coat the throat, and now we had potassium, and something to increase appetite. You know those little plastic cups that they give you your medicine in at the hospital, I scooped every one of those up that I could get. Dad's breakfast, generally consisted of oatmeal very liberally soaked down with milk and several of those plastic cups containing liquid medicine (either liquid form or crushed pills). The only thing we had to make sure of was that we got Dad's PICC line (which was still in because further treatment had not been ruled out) flushed at least once a week. No problem, the wonderful folks at Home Health agreed to flush it (fo which we were much grateful) so we didn't have to travel back to Lexington to have it done.

 Courtney and I both would usually go over to Dad's every morning and get his breakfast ready, fix his medicine, layout his clothes, and wait on him to get bathed and dressed for the day before we left him; on workdays we went before work. Don't get me wrong, Dad wasn't helpless, he was just weak and hurting, he had no stamina and he continued to lose weight. The hardest thing for him to deal with was the fact that it was not safe for him to drive and we wouldn't let him. After all the morning things got done, Courtney and I would go to work (if it was a workday) and Mom would take over. Our goal was to make sure that Dad didn't have to move around much while by himself.

 So basically, Dad sat around and watched the morning news or whatever his programs were and around noon Mom would come over with his lunch. Something soft but always something easily swallowed. Then they would make their way to the post office or to the health department to have his blood pressure checked, or to visit his Belfry friends. Many thanks to Millard and Loretta Bevins, Johnny and Estil Hylton (and Carolyn and Debbie), the late Fred Hatfield and Charlene, and I'm sure there's many more that I'm leaving out. But they were always back home by the time Courtney and I got home from work.

 In the evenings, we would go out (if Dad had been in all day) or go to the Moose for dinner (Dad's old home away from home but also a place where he had many, many good friends). We'd get back in and finish the evening cleaning and straightening up, washing clothes, etc. until Dad was ready to go to bed. By the time we left, he was in bed with the phone at his bedside. If he needed us, Courtney was right across the road and I was about a mile away. Dad got to keep his independence while we made sure his every need was accommodated. Things went very good for a while. Dad was still eating somewhat better and strong enough to drive again.

 Least I forget, it was football season; not only football season but Belfry Pirate football season. Dad was determined to get to a game and finally, we gave in, and let him go. You see chemo is a poison, and it attacks your immune system and he really wasn't supposed to be out among large crowds where germs run rampant. But how do you tell someone who had been through what Dad had been through that he can't go enjoy what he loves most in life during what was probably last days of it? You don't, and so when Johnny and Estil Hylton asked Dad to go to the Pike County Bowl we agreed he should go. Dad was hesitant to go at first because he was worried about being able to last though the trip to Pikeville and then the whole ballgame without being worn out or sick. He was worried about ruining Johnny and Estil's evening. He really should have known better because both Johhny and Estil made it clear that if Dad couldn't make it and needed to go home that they would take him home. I believe they really wanted him to go so bad it didn't matter what the circumstances were. He went to the game it really was uplifting for him. Johnny and Estil were both very good friends to Dad.

 Later on he went to another game with Courtney. I told her when and if Dad needed to come home call me and I would come and get him. Courtney said they hung right around the band room (at the old stadium) where they could get to the car easily if they needed to. But Dad stayed the whole game. It was another good night for him (and Courtney too).

 One of the most heart-breaking things for me was right after Dad's doctors had doubled his acid reflux, or heartburn, medicine Prilosec (remember this was in 2000 when Prilosec was still prescription and it was the "wonder drug" before Nexium). Dad ran out of his prescription early because he was now taking it twice as often. When he went to get it refilled they wouldn't refill it because it hadn't been 30 days (thank god for the fact that insurance companies make our life and death decisions, 'insert loathing here''). So Dad tells me, "I just won't take it until I can get it refilled". I was so upset and outraged that he thought he had to do without. A dying man, with esophageal cancer, which was probably directly related to his chronic heartburn, was going to do without because some insurance company said he couldn't get his pills filled because it hadn't been 30 days. It was pitiful and sad. I cried all the way home to call the doctor, who called in another prescription and took care of the problem. Who do the insurance companies think they are? It was Prilosec for goodness sake, not oxycontin. End of rant.

 Then we had another "scare of our lives". We took Dad to the Home Health office to get his PICC line flushed and they discovered it had a hole in it. No really big deal except that it had to be taken care of. We called around to see if any local hospitals could repair it and finally reached the conclusion that he would have to go to Central Baptist for them to take care of it. Luckily, Courtney was off work so she and Mom took him to Lexington. Of course, as it turned out it had to be removed. It seemed like such a long trip for such a simple procedure. But they took it out and Courtney with Mom and Dad were back on their way home. As they were getting off of the Mountain Parkway in Salyersville Dad started weaving back and forth. Courtney started yelling at him and he did not respond; I'm quite sure they were scared to death. Courtney put on her emergency blinkers and got to Saylersville as fast as she could and pulled off at the first place she could. Courtney ran in (it was a gas station) and hysterically asked them to call 911, her Dad had passed out in the car and he was a chemo patient. The ambulance was there quickly and flew to the hospital (Paul B.Hall in Paintsville) with Courtney right in tow. Later Mom said that Courtney never let the ambulance get away from her. She also said she was scared to death about what they would face at the hospital; she did not expect Dad to be alive but fortunately that was not the case.

 They called me and I rushed to the hospital. Mom has a brother, Clifford, that lives in Paintsville so I called him and his wife Linda and told them what was going on. When I got there both of them were still there with Mom and Courtney. The good news is that Dad was ok, but was having blood pressure issues. We told the ER doctors about Dad's medical issues and it was decided that they would only stabilize him so that he could be transferred back to Central Baptist where his doctors were. So Mom, Courtney, and I spent the night in the waiting room of Paul B. Hall hospital in Paintsville KY. In fact, the Apple Festival was going on (something we usually always attended) and Courtney and I got so tickled about just walking over to the booths and something about it being 4am. There was nothing funny about it but we laughed our head off until Mom (in that Mother tone) made us hush. It was just a way to handle being scared to death. Then it got worse, one of the nurses came in and woke us up to tell us that Dad's blood pressure was dangerously low. We went into his room and they had his bed tilted feet in the air and head almost touching the floor. They explained that that position should help his blood pressure come back up. If it didn't we were in trouble and they let it show. Fortunately, it was not God's destiny for Dad to leave us right then. He made it through the night and eventually was stable enough to be transferred to Lexington. Dad spent that next week in the hospital but did get to come back home. I don't recall (if we ever knew) what exactly caused the whole episode.

 During the immediate days after Dad came home (originally, at Labor Day) he was feeling really well. He was not gaining, but maintaining his weight which was around 160 or so. At that point, that in itself was a miracle since every time we'd been to the doctor he had lost weight. We told him we refused to buy size 30 pants so it was either eat or wear suspenders. Of course we were kidding, we would have bought him anything he needed. Dad's weight at diagnosis was around 280 and he was wearing a size 40-42 pants. By the time he was diagnosed he had already lost about 50 pounds. He was still wearing his clothes but they were very, very baggy. The next size we went to was 38, then 36, then 34, then 32's and that is where we stopped. Every size he went down we would go to Wal-Mart and get black, blue, and tan pants. Colors that make a wardrobe. Shirts weren't as difficult as everybody wears their shirts any which way; but pants, well they were a different story. After that he finally gained six pounds, six glorious pounds.

 But it didn't last and we were soon to find out that we were approaching.....

The Beginning of the End

As it turned out, Dad would get to stay home until after Thanksgiving. Up until that time things were going very well and we were enjoying every minute of our time with Dad.

Some time before Thanksgiving I got some type of bug that was going around, you know the head hurts, cough, upset stomach, runny nose, sneezing, kind of bug. I did my best to stay out of direct contact with Dad, and even though Courtney pulled more than her load I was still needed to help. So when Dad started feeling bad too I thought he was getting my bug. In fact, one day he left the house driving and the day ended up with his Moose Lodge friends calling Mom to tell me to come and get him. He was sick and not able to drive. He scared me to death. When I got there, 3 men helped him out the door and he was very weak and unsteady. I wanted to go to the emergency room and he did not. As I passed Appalachian Regional Hospital on our way home, I told Dad if he didn't feel better soon I was calling 911 and we were going to the ER. He was only getting his way for a little while but he did get to feeling better and I gave in about 911 because Dad had an oncologist appointment right after Thanksgiving. We were finally going to find out the results of his treatment and we were also going to meet with a surgeon to remove the tumor.

During the days that led up to Thanksgiving Dad really struggled. The days are kind of a blur. I called Dad's doctors several times about different issues we were having. Dad wasn't eating good again and he was really sick and weak. There were days he couldn't hold his head up. It's hard to say this, but often felt so bad that he couldn't even control his saliva. His doctors put him on a steroid to boost his energy, and that it did. He felt better almost instantly. But in the end we leaned that the steroid, although it made him feel better, only masked sick he really was and how bad he was really feeling. He was not eating and with the steroids he wasn't getting hungry either.

I remember we went to my Grandmother Bevins house for Thanksgiving,(I was still not fully recovered but recovered enough). Dad, however, was about the same. I called his doctors again that day to see if they would call him in something for (what I thought was just) a "bug". They explained to me that what was going around was viral and an antibiotic would not help. They would be seeing Dad that following Monday (the 27th of November) and if was still no better they would admit him. We were also going to talk to a surgeon about the possibility of an esophagectomy.

We left for Lexington that Sunday after Thanksgiving, but we were'nt really sure that Dad was up for the trip. He was feeling somewhat better than the days before but was in a lot of pain in his side. We were thankful that he would be seeing his doctor the following morning. However, when we got down there Dad asked to go to the emergency room, so we went. He was in much paid and a very ill mood. The ER staff at Central Baptist, well I shouldn't say the whole staff but most definately the nurse that signed us in, was the rudest most uncaring witch that we had encountered to date. Her name was Nina (and I would love to post her last name but I don't need the hassle). We had gotten Dad a wheelchair because he was in so much pain and was so weak that he just couldn't walk in, and in the most caring of gestures Nurse Witch Nina came and told us that they needed the wheelchair and for Dad to get up. The waiting room was full and the rest of us were already standing up, but this one kind lady got up and insisted that Dad take her seat. She wouldn't take no for an answer and we were in no place to argue.

When Dad finally got called back they gave him some type of pain medicine, I'm not sure what it was but the pill was blue. I thought Dad had found heaven in that little blue pill, he was so relieved that his pain went away after it kicked in. Dad's oncologist, Dr. Eldridge came in to see him that night and admitted him into the hospital. Every time we went down there unprepared for Dad to stay it seemed he ended up getting admitted; likewise we made a trip to Wal-Mart for lounge pants, tee shirts, socks, and underwear. We had those purchases down pat.

Dad's appointment with both his oncologist and the surgeon happened in his hospital room. Apparently, the chemo and radiation had shrunk the tumor to the point that surgery may be a possiblility. So when the surgeon came in to talk with us (after he had reviewed Dad's records) and confirmed that he thought Dad was a candidate for surgery (which he intended to do), we were ecstatic. The impossible had happened, what they told us in the beginning would not be possible appeared was going to happen. It was a miracle. In the meantime Dad had to get better, he had to get over his cold or flu bug and his surgery was set for January 4th 2001 because we wanted him home for Christmas. The surgeon said that would be a purfect time.

Dad stayed in the hospital the rest of that week on an antibiotic IV. They were monitoring recovery by performing chest xrays which showed that some of the infection was clearing up. There concern was that with the strength of the antibiotic and the amount of time he'd been taking it, they felt that more of the infection should have cleared up. Because it hadn't they were going to perform a CT biopsy to see if anything else was going on. I talked to Dad, as most of us did, every day. He was up walking around the hospital, watching TV, and basically living as he did at home, no IV (except the occasional antibiotic), no oxygen, no anything; unrestricted in movement and in what he ate. The CT biopsy would be the upcoming Friday, December 8th 2000.

I called Dad very early that morning specifically to talk to him before the biopsy but at 8:30 in the morning I was already too late. I wish I had gotten to talk to him because that day led to the beginning of the end. I really believe that what ever happened during that biopsy led to Dad's imminent death; not that I believe that they killed him because I don't. Just that it happened sooner because of it.

We were going to Lexington that weekend after Courtney and I got off work (as we did every weekend Dad was down there). I am the one that gets off the latest so it was close to 5:00pm when Mom called the bank, very upset. They had punctured Dad's lung during the biopsy and would have to get it re-inflated which should be such a big deal. Punctured lungs were a regular occurrence anyway, weren't they?

By the time we drove the 3 hours to Lexington they still hadn't gotten Dad's lung inflated. Apparently, it was a new type of equipment and they really weren't sure how to use it. None of them (assigned to that area) knew how to use it. They assured us it put Dad in no danger because of it. If you ask me, maybe it didn't and maybe it did.

By the time we left the hospital Dad's lung was re-inflating and he was almost asleep. We were worn out and planned on getting back to the hospital early the next morning. Which we did.

When we got there we noticed right off that Dad appeared swolen and his stomach was very hard. Ideally, they would have been able to take him to surgery to find out what was going on but Dad was too weak and they were afraid he wouldn't make it through the procedure. They were going to do a CT scan and see what it would show. They were specifically looking for a "leak" of some type that would cause the swelling and hardness in Dad' stomach. The CT scan didn't yield much information as Dad couldn't get the oral contrast down. He threw up what he got down and therefore the CT was not successful.

I stayed at the hospital that whole day (Saturday) while Mom, Rod, Courtney, Tommy, and Linda only left long enough to eat. It was a good day with Dad and one I will cherish forever. We watched ballgames, and I worked puzzles, we all talked and laughed and Dad rested. Again, we didn't leave until he was ready for sleep which was early. We took advantage of this to go home and unwind. Mom, Rod, Courtney, Tommy, and Linda went out looking at Christmas lights, while I stayed home and enjoyed the peace.

At some point in Dad's hospital stay around this time he was told he needed a pacemaker after meeting with a heart doctor, and was put on morphine for pain which about drove him crazy among other things that I can't remember, and finally told he had tuberculosis and transferred to an isolation ward where we would spend the next three days and nights. The one good thing about the isolation ward was that the room was very large and had its own bathroom, including a shower.

It was now Sunday, December 10th 2000. Four days prior to........

The Journey to December 14, 2000

We got up early that Sunday morning and were doing our usual things, eating breakfast, watching television, and of course, I was on the computer with Tommy and Rod nipping at the bud for me to get off so they could have it. So when the phone rang I picked it up since it was laying there on the computer desk and saw that the caller ID showed it was Central Baptist so I answered it quick. It was Dad. The first thing he said was "Nay, what are you all doing?", so I told him just getting moving he dropped the bomb on me and I will never forget his following words for the rest of my life. He said "Got some bad news, the biopsy showed cancer in my lungs. The doctors want to talk to us about what we're going to do. How soon can you all get down here?". I told him we were on our way and we literally were. We went out of that house only giving our teeth and hair a swipe and we really didn't care. We were in Dad's hospital room in about 15 minutes, very good time by Lexington traffic standards.

The doctor came in not too long after we did. It wasn't Dr. Eldridge as he was out of town but the doctor who was covering his patients. Basically, what it boiled down to was we had no choices. Dad's cancer had spread to his lungs and the fight was over. It was going to be all pallitive care from that point on. I keep hearing over and over the words, "it may be 3 days or it may be 3 months but it won't be long". Dad was given the death sentence and the doctors were giving up. We asked to be alone so we could get ourselves together and figure out where we were going from there. We were a wreck, but Dad was under control or so it seemed, maybe he was just in shock. But he was trying to comfort us instead of us being there for him. At that point, I wanted to die with him. (Right now I'm crying reliving this memory. It is the only time I cried so far in writing all of this.) But we managed to get things arranged to speak with a minister, make a few phone calls, and a lawyer came in to make a formal will for Dad (as he insisted), Rod had asked what they would be doing for Dad at the hospital that couldn't be done at home, so when the doctor said :"nothing really" we asked to take him home. They agreed and started the process of arranging for hospice.

In the meantime they wanted to know what we wanted done if Dad was in trouble. We didn't want him on life support but we didn't just want to let him die either. So we told them to try to resuscitate but nothing artificial to prolong his life and I had to sign a statement to that effect. However, our hearts were broken the next day (Monday, December 11th 2000) when Dad's doctor, Dr. Eldridge, came in to check on Dad. Doctor Eldridge was a fine doctor in my opinion but he also was lacking in the bedside manners department at times. So he walks in and says to Dad, "so you got a bad draw", what the heck was that? I'd say it was just a little more than a bad draw. Then he proceeded dishing out his next bit of disappointing news, he had seen the orders we had signed for Dad and then told us that we should not request any attempt to save Dad's life. We would just be delaying the inevitable, but isn't that what they all do? We're all going to die, so any successful life saving attempt is just delaying the inevitable. What he was really saying was that Dad's life wasn't worth saving. I had gone from devastated to devastated and crushed. How could Dad's life mean so little?

Anyway, we got everything taken care of by the next day, Tuesday, December 12th 2000. The ambulance would come and pick up Dad to take him back to Mom's house. Rod would ride with Dad in the ambulance and Mom and I would follow. Tommy and Courtney had already left earlier to go home and make the house ready for the home care equipment to arrive. They were also going to get a Christmas tree and get it up before Dad got there. That was very important to us as we were looking forward to a special Christmas with Dad before his scheduled surgery. Courtney had already bought Dad a new pair of the famous wing-tip shoes he always wore. He had polished his others so much that we didn't really know what color they had been. We hadn't left that hospital since the Sunday Dad called us. At a minimum six of us stayed in that room for 3 days and 2 nights.

We had a fleeting moment of trouble when Lexington hospice forgot to send Dad's medicine with us, and neither did we have a prescription. So we called them back and they arranged to call them in at Pikeville Methodist Hospital phamacy and we could stop on the way and pick it up. The glitch being, the pharmacy was full and I was told that it would be an hour wait. I was very upset but Mom had other ideas. She went in there and insisted that they fill Dad's prescriptions right then and there, no waiting. She told them that it was a matter of life and death, so when they said something to the effect that it is for everybody, she let them have it. After she insisted that they look at the medicines being prescribed for Dad (Haldol, Duragesic, Morphene, etc.) she made them understand that they don't just prescribe those type drugs for a common cold. They filled them immediately and we were back on our way to the house.

We got everything that had to be done by that evening (even the Christmas tree with lights only) and hospice came to do their interview. It was the general interview, asking about Dad and his treatment and his habits, checking out the equipment, showing us how to use it, what to look for, bringing bed chucks, showing us how to give the medicine, and finally how to get ahold of them anytime day or night. We also had "the talk" about not calling 911 or doing anything to prolong life, but when and if something happened to call them and they would take care of everything. Like a slap in the face, I realized that we were waiting for Dad to die. It was really late that evening when they left but we were asurred that they would be back the following day.

I can't begin to tell you what a valuable service hospice performs.  Our local hospice was Hospice of Pike County.  Debbie Trusty was one of the people assigned to Dad's case (and the only name I can remember).  We only had their services for 2 short days but I can't say enough good things about them.  They are the greatest people to have on your side in such a time of dispair.  Many thanks to all of you.

Anyway, we set up all of Dad's stuff in the living room, the bed, oxygen, and everything else. We wanted him to be right in the mix with us. He did really good that night and next day. Somebody had stayed up with him all night, I don't remember who it was but I know it wasn't me. I was worn out and my night was to come.

It was after the presidential election of 2000 and we still didn't know if Bush or Gore won. Dad was all Gore, while the rest of us were Bush fans. Dad kept himself occupied by trying to figure out a way for Gore to still win the election because at that time it looked like Bush was going to win. There were still maybe 3 states that were too close to call, and of course, there was the Florida fiasco. Then Dad decided that he and Rod would play the ABC game, Dad had sold wholesale tobacco at his prior job, so his game was to name cigarette brands that begin with A, then B, then C, and you get the picture. They played that game for a while.

So far Dad didn't seem to be in much pain, of course he came home with a Duragesic patch on but hadn't had any additional pain medicine. Later that evening he was getting somewhat uncomfortable so we gave him a minimal dose of pain medicine to see if that would alleviate the pain, if not we would give him more. Hospice said it was okay to give an additional dose if it appeared the first one didn't work but we didn't need to right then. He got a pretty good nights sleep. I know because that night was my night. Dad woke up once and insisted on a bologna sandwich, which he hadn't been able to eat since June. But I made him a half of one and believe it or not he ate it. We talked for a while and he went back to sleep.

We could tell a difference in Dad that next day, the day, the final day of his life. He didn't have a lot of energy and was in more pain. We had all taken off work for the duration but still had things that had to be attended to. Courtney and Tommy had left briefly to go to the post office and stop at the school where Courtney teaches. While they were gone we had a semi-scare. Rod was in the room with Dad and all of the sudden he screamed "Renee, get in here". When I got there Rod was white as a ghost and he was almost shaking when he said "I didn't think Dad wa going to take another breath", what I learned happened was that Dad had taken a breath and there was a long pause before he started breathing again. For the time being Dad was okay again.

When Courtney and Tommy came home we told them what had happened and we were all scared at what kind of a sign it was. We had been calling a few of Dad's closest friends that day to let them know he was home and that if they wanted to see him, they better come on. Unfortunately, they didn't have time to make it.

Around 5:40 that evening we (meaning Mom, Me, Rod, Courtney, and Tommy) were all standing around Dad's bed and he was really struggling. Our Uncle Tommy and his wife, Connie (Mom's brother and sister-in-law) were there, along with out cousin, Jimmy (son of Mom's other brother, Clifford). That's how we were when Dad took his last breath; he just took a breath and then never took another one.

The fight was over, cancer had won. Not quite six months after diagnosis, cancer beat us. We called hospice and they took care of the rest. All we had left to do was to deal with the arrangements and....