Surgery # 1

Surgery day started REAL early. My Mama, my brother, David, and my sweet niece, Michaelann, all came up to go to the hospital with us. Ken wasn't supposed to eat before surgery (not that he could) and I couldn't swallow around the lump in my throat, so there was no breakfast for us. I hope everyone else had something to eat. Since it was October, I'm sure it was probably dark when we got ready to go. Can't remember if the boys stayed home or went to school. David's wife was going to look after them for me that day. I had met with the principal at J & B's school to let her know what was going on. Told her that there would be days that the boys wouldn't be there or wouldn't have their homework done. She seemed very understanding.

We got to Erlanger and Ken and I had to go into the tiniest little room to meet with a woman who was not happy to be there so they could get Ken all signed in. I know that people have bad days, but we were sitting there SCARED TO DEATH. She could have at least smiled at us.

They took us back to a holding room and gave Ken one of those "beautiful" hospital gowns to put on. About the time he got changed, our pastor, Keith, came in. He told us everyone at church was praying for us. Then he told Ken that he had some oil with him and asked if we wanted him to annoint Ken before the surgery. We had never talked about it (it's not something you usually see in most Baptist churches), but we both blurted out, "Yes!" at the same time. Keith annointed Ken and prayed for three things. . . Guidance for the doctors, healing for Ken, and strength for me. It was such a precious and heartfelt prayer. God was in that room, of that you can be sure.

During the time we were waiting for them to take Ken to surgery, different family members came back one at a time. Finally they came and had Ken get on the gurney so they could take him to the operating suite. I held his hand to the door, showed him a picture of us and the boys taken a few months before, leaned down and whispered, "Don't forget--this is what we are fighting for." We kissed each other and they wheeled him down the hallway. I tried not to think about the fear I saw in his eyes.



The nurse showed me to the surgical waiting room, which by this time was filled with people. As I looked around, I realized that fully half of those waiting were there for US. My family, Ken's family, Keith and his wife, Joan, several members of our church family. . . even a couple of girls from the church Ken and I had attended previously (and were married in). They, by the way, were God's way of making sure we would laugh that day. Definitely comic relief.

Dr. Valle called to let me know that they were getting him prepped and he would have the nurse call when the actual surgery started. About an hour later, she called. We all settled in to wait. People came and went all morning. It was amazing how many people were thoughtful enough to either come by or call and let us know they were praying for us. Jayne (my best friend's sister) brought by a huge bag full of goodies--snacks, magazines, crossword puzzle books, tissues, etc. So sweet. I think I played a game of Scrabble with Michaelann and David. I listened to a Lyndle Randle CD. I talked with people off and on. But mostly, I watched the door.

After another two hours or so, Dr. Valle came in and told me that the surgery had gone well--the feeding tube was placed. Ken was in recovery and they would call when they were ready to take him to a room.

Getting Ready

The next few days were a whirl of activity, trying to get ready for Ken's surgery. The first thing we had to do was tell Jesse and Benjamin. Ken and I had always believed in being honest with our kids, no matter what, so there was never any question about telling them--just how detailed we should get.

Ken asked me to do the talking. I remember we called them into our bedroom and we all sat on the bed. Looking into those sweet faces, knowing I was about to "rock their world", was probably the most heart-breaking thing I've ever had to do. I took a deep breath. I took another deep breath. I looked at Ken. He nodded his head. I took one more deep breath and said, "Remember how we told you last week that Daddy had something in his stomach that wasn't supposed to be there?" Two little heads nodded in unison. "Well, " I continued, "the thing in Daddy's stomach is called cancer and it is making him very sick." Panic wells up in Jesse's face, making it hard for me to breathe. I forge on. . . "The doctor is going to try and make Daddy better, but we're not sure he can." Jesse asks, "What will happen if the doctor can't make him better?" Now I'm fighting back tears. "Well, Honey, if the doctor can't make him better, then Daddy may have to go to heaven sooner than we want him to. But we're going to pray that God will help the doctor find just the right way to make Daddy all better." "Do you mean Daddy will die?", Jesse whispered. Benjamin's head pops up--I think it's the first thing said that really got his full attention. "Baby, we hope not, but we just don't know for sure."  (Wow. . . it still gives me a sinking feeling just remembering.)  We all hug each other.  Ken tells the boys not to worry--he'll be fine.  If only that had been true. . . :(

The only other thing I clearly remember prior to Ken's surgery was going to a lawyer's office to get wills done.  It was very surreal, telling a perfect stranger what we wanted done with our stuff and who we wanted to raise our children.  If anyone reading this has young children, please get wills done before you are forced to by some tragic circumstance.  You should be clear-minded to make such important decisions.    

The C-Word

Ken’s appointment was on October 6, 2002, with Dr. Alvaro Valle (pronounced Val-yay). I have to admit that I was a little apprehensive when I learned he was of foreign descent. Not because I had anything against people who weren’t born in the USA, but I was afraid that there might be a language problem. I only worried about that because I remember when I was in labor with Jesse, the first anesthesiologist they sent was Indian and I could not understand anything he said. Each time he spoke to me, I had to ask him to repeat it and he was getting mad at me because I couldn’t understand him. Now, we were going to be fighting for Ken’s life–I wanted to make sure we would be able to understand each other.

The waiting room at the surgeon’s office was one of the fanciest I have ever seen. You could tell it had been professionally decorated. It was nice to have such a comfortable place to wait. Dr. Valle’s nurse, Debbie, called us in and showed us to an exam room. I asked her if the results of Ken’s biopsies had come back yet. "Yes", she said, and tried to give me a warm smile, but I could see sadness in her eyes.

Dr. Valle walked in and all my fears regarding the language barrier melted away. He did have a very thick accent (he was from Honduras or Nicaragua, but for the life of me, I can’t remember which), but he spoke slowly and deliberately, pausing from time to time to make sure we understood what he said. He wasn’t very tall, but he had the kindest eyes. If anyone in the Chattanooga area ever needs a good surgical oncologist, Dr. Valle is the best, hands down.

Okay, so Dr. Valle comes in and Debbie is right behind him. She picks up a box of Kleenex, first thing. Dr. Valle sits down, looks at me, not Ken, and says, "Do you two have children?" If I ever had any doubt about Ken’s diagnosis, that question wiped it out completely. I KNEW he was about to give us horrible news. And he did.

Ken had CANCER! I knew the doctor was going to say that, but I was still stunned. It was hard to breathe. Debbie handed me the Kleenex and Dr. Valle continued. He said Ken had a very rare form of gastric (stomach) cancer called Linitis Plastica. It was a rapidly-growing, diffuse cancer. Ken’s entire stomach lining, inside and out, was involved. The cancer had basically caused Ken’s stomach to turn into a "leather pouch" that would not move and stretch the way a normal stomach should. That was why Ken couldn’t hold any food down. Because the cancer was so diffuse (spread out), Dr. Valle didn’t think surgery, other than to place a feeding tube, would be a good option. Linitis Plastica didn’t manifest itself as a self-contained, localized tumor. Rather, it had many "finger-like" tumors reaching across and through the entire stomach lining.

Dr. Valle said that they would be scheduling the surgery to place the feeding tube immediately because Ken would not be able to eat enough to sustain his weight. He said if Ken felt like eating anything, to let him try, but that meat and dairy products would probably be tough for him to digest. Then Dr. Valle looked at us with those kind, dark eyes, and said, "You need to go home and get Ken’s affairs in order–today." I felt like someone had dropped a brick on my head. I know I keep using the word "stunned", but it is the only word that describes the way I felt on that horrible October day.

Debbie came back in with the order for surgery. Dr. Valle shook both of our hands and told us to try and get some rest (yeah, right!). We had valet-parked our car, so we headed down to the front desk. They drove our car around and I asked how much I owed. He told me nothing. I guess I learned a valuable lesson that day–if your face is blotched from crying and you still have tears pouring down your face, you get valet parking for free. We got in the car and headed for home. I looked over at Ken and said, "How in the world will we ever tell our babies?" He just shook his head.

Three Days in the Land of Limbo

The gastroenterologist’s office called the next day and told us Ken had an appointment with the surgeon IN TWO WEEKS! How in the world did they expect us to wait two whole weeks to find out what was going on?! As soon as I hung up with them, I called the surgeon’s office and spoke to his nurse. I explained what was going on and told her that there was no way in heck that we could last two weeks, wondering like that. She kindly checked the Dr.’s schedule and told me we could come in three days. That would give plenty of time for the results of the biopsies to be in.

In the meantime, life at the Lunsford house was just plain CRAZY! The phone was ringing constantly and people we hadn’t seen in FOREVER were showing up at our front door. I know that they were concerned for us, and I really appreciated that, but at that point, we really didn’t know for sure what Ken’s diagnosis was and what his prognosis was going to be. And, in all honesty, we were both so stunned that neither one of us was able to hold a meaningful conversation for long.

We decided not to say the word “cancer” to Jesse and Benjamin until we knew for sure. We just told them that Daddy had something growing in his stomach that wasn’t supposed to be there and that we would be going to the Dr. to see if he could fix it. Benjamin was such a little guy (only seven-years-old), I don’t think it really affected him to any great degree. I noticed a momentary flash of panic in Jesse’s eyes (he was eleven), but he seemed to be okay when we told him the Dr. was going to try and help. After all, in his realm of reality, that’s what always happened. . . if you’re sick, you go see the Dr. and he makes you well. If only. . . .

I cannot tell you what happened during those three “waiting days”. I think my brother, David, came and took the boys to spend the week-end at their house to give us time and space to make some plans. But that may have been another time—I can’t remember. I realize that I say “I’m not sure” and “I don’t remember” a lot. You will have to forgive me. But dealing with such profound “stuff” tends to wipe away specifics for me. I do know that Ken and I spent a lot of time during those days just holding each other and looking into each other’s eyes. Neither one of us had the strength at that point to put our feelings into words.

The Way It Began (Part 2)

Had to stop in the middle last time. Some of the feelings I thought I had tucked away for good were beginning to swirl around. Funny how talking about it can take you right back to the time.

After what seemed like a year (I'm sure it was actually only a minute or so), I asked the Dr., "So what do we do now?" I'm not really sure I heard everything he said. It kind of came in bits and snatches. I heard, "that will depend", "more tests", "every case is unique", ". The rest of it was sort of like the teacher in the Charlie Brown cartoons. . . "waa, wa wa wa waaa".

I guess the Dr. realized I was zoning out, because he stopped and said, "Mrs. Lunsford?" I blinked three or four times and tried to focus back on his face. He said, "I'm going to refer you to a surgeon because Ken will most likely need a feeding tube". What he didn't say was that it wasn't just a "surgeon" he was sending us to, but a "surgical oncologist". He went on to say that he was sure the surgeon would want a CT scan done, so he was going to just go ahead and send Ken up to the imaging center to get that done before we left. He told me that Ken was still in recovery and I would be able to see him in about 20 minutes. As he was heading toward the door, he said, with a face full of genuine regret, "I'm sorry--I wish I'd had better news to tell you."

I went back into the waiting room. People were still waiting to hear about their loved ones. Waiting, chatting, reading, watching TV--just the same as they had been when I went into "that room". Now I had twenty minutes until I could see Ken. What should I do? Should I cry? Should I pray? Should I call someone? Who should I call? I was in such a whirl of emotions.

I finally decided that I should call Mama and our pastor, Keith. Tried Mama first. She answered the phone and I said, "Mama?" That's when I was hit with the most crushing load of fear I have EVER felt. It was so bad that I couldn't speak another word. Mama was on the other end of the line yelling at me to talk to her and tell her what's wrong. Every time I opened my mouth to speak, my breath left me and all I could get out was "wait. . . ". This went on for about 5 minutes. Poor Mama. I'm not sure if I ever apoligized to her for doing that. I can't imagine what she must have been thinking.

I'm not really sure how it finally came out, but I think I said something like, "Mama, there's a mass in Ken's stomach and they think it may be cancer!" I do not remember what she said, as the rest of the conversation is a big blur. I remember telling her that I would call her later. I hung up and tried to call Keith. I forgot that he was going to be out of town that week. I guess the secretary heard how upset I was because she put me through to Brad, our brand-new (I think it was his first official day at work) associate pastor. I introduced myself (remember, he was new), told him what was going on and where we'd be. He said he'd be right down. Poor guy, he got lost on the way because he had just moved from Knoxville and had NO idea how to get to Erlanger Hospital.

About that time, the nurse came to tell me I could go back and see Ken now. When she saw how upset I was, she got a panicked look on her face and said, "I'm not sure he knows yet". I'm not sure if she expected me to paste on a smile and pretend everything was peachy, but I was too far gone by that time. Turns out, Ken did know. I think he knew all along. As soon as the procedure was over and they started trying to rouse him, he looked at the Dr. and asked, "Is it cancer?"

I went into the recovery area and Ken was sitting up in the bed. We didn't say anything--just held hands and looked at each other. The nurse came with a wheelchair and handed me an order for a "STAT" CT scan. Now, I've watched enough ER to know that "STAT" means "do it now". I didn't know, though, that Drs. don't usually issue "STAT" orders unless something tremendous is going on. We got up to the imaging center somehow--I believe the nurse went up with us. They gave Ken a big cup of the thickest, gloppiest stuff I've ever seen and said, "when you finish that one, let us know and we'll give you another one". Now, I know I had a HUGE lump in my throat. I'm sure Ken's was worse. How in the world did they expect him to drink two full glasses of that nasty stuff? About 3/4 of the way through the second cup, Brad came in. He had been driving around downtown Chattanooga for the better part of an hour, trying to find us. He held our hands and prayed for us. They called Ken back and Brad stayed with me while Ken was having the CT. Several months later, Brad got all crossways with some people in our congregation and he left under not the best circumstances. But as long as I live, I will NEVER forget that it was Brad who was with us on that first day and that he was the first one to pray for us.

When the CT was over, they brought Ken out and sent us home, saying, "You'll be hearing from the doctor soon." Such innocent words. . . such ominous feelings.

The Way it Began

Ken had never been sick.  He never let himself be sick.  He truthfully believed that a lot of illness is in a person's head.  So, if he felt bad, he just told himself he didn't feel bad and pretty soon, he didn't.  So when he started complaining of a stomach ache, it was unusual.  I asked him what kind of stomach ache it was, when it usually happened, did it happen when he ate certain things, etc. . . you know, trying to see if I could figure out which kind of OTC stomach medicine to get for him to try.  Unfortunately, Ken had strange ideas about taking medicine, too.  I think it stemmed from watching certain of his family members taking every kind of medicine imaginable over a long period of time.  Anyway, he would just tell me that it would get better, and he would NOT take any medicine.  

The mysterious stomach ache continued.  I could tell in his eyes that the pain was real.  I started trying to get him to let me make him an appointment to see the Dr.  But, he was stubborn and kept believing that, whatever it was, if he ignored it long enough, it would go away.    I tried to watch and see if there was any kind of pattern to it.  I nagged him to go see the Dr.  I have to admit that during the six months he complained of pain, even though I was concerned, I was also more than a little ticked off at him.  If he was in pain, he should go to the Dr.  If he wouldn't go to the Dr., then he should just hush about it.  

Then, Ken started throwing up.  He hid it from me at first.  But it got to the point that nothing he ate would stay down and he started losing weight.  Now, Ken was a thin man to start with.  He did NOT have any spare pounds to lose.  I think that is what finally scared him.  He asked me to make him an appointment to see the Dr.  I called that day and got an appointment for him to see my internist.  He came home that afternoon with a bunch of pills like Prilosec or Zantac, all the ones you can get over the counter now.  He took them for about a week.

The pills did seem to ease the pain a little, but Ken was still throwing up after eating.  The internist said it would be a good idea to see a gastroenterologist so he could check for an ulcer or something.  So, off he went to see another Dr.  I asked Ken what the Dr. had said and he said the strangest thing.  He asked Ken if he had life insurance.  I think that was the first indication that this might be a little more serious than we had thought.  It kind of made me sick at my stomach, but I just pushed it to the back of my mind.  Doctors see a lot of people during the day.  They have to make a lot of chit-chat.  I'm sure that's all it was.  Anyway, the Dr. set Ken up for a colonoscopy and an endoscopy the following Monday.

Ken told me that I didn't have to go with him, but they were going to put him into a twilight sleep for the procedures, so I figured he would need someone to drive him home.  I told my supervisor (I was teaching pre-K at the Baptist Church) that I would need Monday off.  We had to take the boys over to a friend's house really early so that they could catch the school bus with them.  Then we headed to Erlanger Hospital in Chattanooga.  Little did we know how many times over the next two years that we would be making that trip.

They took Ken in and I settled into the waiting room--I think I had a book with me.  Anyway, all through the morning, Drs. and nurses would come out and speak to people in the waiting room to let them know how their loved ones had done.  I had never met the gastroenterologist, so I didn't know who to look for.  Finally, a tall man with glasses came through the doors and called "Mrs. Lunsford?"  I raised my hand and waited for him to come and let me know that Ken was okay.  He was NOT smiling.  He said to me, "Let's step into this conference room".  Just so you know, they only ask you into the conference/family rooms if they are about to give you REALLY bad news.  But I didn't know that, and I followed him in, oblivious to the fact that our lives were about to be totally and eternally altered.

The Dr. asked me to sit down.   He looked at me and asked, "How long has he been sick?"  I felt as though he had punched me in the stomach.  "About six months", I said, "does he have an ulcer?"  "No", he said. . . it wasn't an ulcer.  But Ken did have some "suspicious" tissue in the lining of his stomach.  (BTW, when they call something, "suspicious", that usually means they already know what it is, but they just can't tell you yet until the biopsies are back).  Then the Dr. pulled out a color picture of what I learned was Ken's stomach.  Even to my untrained eyes, I could tell that this was something monstrous.  It was red and angry-looking.  I took a big gulp and asked the Dr., "You've seen this before?"  He nodded his head.