On Friday, November 5, 2004, Ken actually woke up feeling a little stronger. He got dressed and went to sit in the living room. We watched some TV, talked a little and held hands for a while. I don’t remember who got there first, but early that afternoon, Ken’s dad and his mom both came over – not together, of course – they never go anywhere together. It’s the craziest thing I’ve ever seen – they’ve been married and living in the same house for well over fifty years, but they NEVER speak to each other or go places in the same car. So I guess it was just a fluke that they ended up at the house at the same time.
Anyway, we were sitting and talking with Ken’s parents, having a fairly pleasant visit, when Ken called my name. When I looked over at him, he was holding up a tissue stained with bright red blood. Now, he had been coughing up phlegm tinged with a tiny bit of blood for a couple of weeks, but this was pure blood – and a lot of it. It scared me, but I don’t remember panicking. I called Dr. Schlabach’s office and they told me that I should take Ken to the ER. I called Mama and told her I needed her to come. Then I TOLD Ken’s mother (this time, I didn’t ask – I didn’t give her a chance to give me an excuse) that she would have to stay at the house until the boys got home from school and she could leave as soon as my Mama got there. I asked Ken’s dad if he would help me get Ken out to the van. He got the wheelchair and we put Ken in the van. Ken’s dad said he would drive us to Erlanger, so off we went.
When we got to the ER and told them what was going on, they of course, admitted Ken to the oncology floor. Ken got so mad. He always got mad, even though he knew that every time we went to the ER they would end up admitting him. They scheduled him for a chest x-ray and blood work, as usual. Different this time was that Ken had to be put on oxygen because his blood oxygenation level was too low. They told him to take deep breaths, because if his level dropped below 85, the oxygen machine would alarm. He became so worried that the alarm would sound that he almost hyperventilated, trying to keep it above 85. I wish they hadn’t told him about the stupid alarm, because he got all stressed out trying to keep it from going off.
By the time we got all settled, it was dark. The room they put us in that time was one of the smaller rooms and it shared a bathroom with the room next door. A little inconvenient, but nothing we couldn’t work around...or so we thought. Well, the fellow in the adjoining room didn’t have anyone staying with him that night. I don’t know if he was heavily medicated or just plain nuts (or some of both), but every time he would go into the bathroom (which was about once every 15 minutes or so), he would get turned around and come into our room when he finished. That, by itself, was a little unnerving, but what made it CRAZY was that when he came into our room, he was NAKED –NOT A STITCH OF CLOTHING!!!! This happened about four times before Ken got so upset that I called the nurse and asked if they had another room they could move us to. She checked, and to our good fortune, the “Rock-Star” room Ken had been in after his first surgery had just become available. They had us moved within the hour. I got Ken settled in and laid down in my bed to rest.
I was purely exhausted and I guess it got the better of me, because it is one of the few times while Ken was in the hospital that I actually fell asleep. I remember being jolted awake a while later by Ken calling my name with a sense of urgency. I sat straight up and asked him what was wrong. Ken looked at me very wide-eyed and said, “I need you to come and help me pull up in the bed.” It was an unusual request...even though Ken was weak and his back was hurting, he always had enough upper body strength to pull himself up in the bed. But I got up and crossed the room over to his bed. When I got there, he grabbed hold of the front of my shirt and whispered in a frenzied voice, “There is somebody in our bathroom!” Now, I’m thinking that he had either been dreaming or was having a reaction to one of his meds, but he said again, “There is somebody in our bathroom! Go and get the nurse!”
I stepped outside the room and a male nurse was standing beside the nurses’ station. I told him that Ken said someone was in our bathroom and was very upset. I asked him to please come and check it out for us. He looked at me like I was crazy, but came on in the room. He opened the bathroom door and there was NAKED CRAZY MAN, standing in our bathroom, just looking around. The nurse asked him what he was doing. He said, “going to the bathroom”. Nurse replied, “That’s fine, but this isn’t your room, man!” Anyway, he ushered the guy out of our room and back into his own. I asked if there was some way they could either restrain him or at least keep a closer eye on him. They said “no”. So, I pushed the pull-out couch in our room up against the extra door so I would at least hear him if he tried to come back in. Ken told me that the guy had been in our room for at least ten minutes, going into our bathroom, coming out and looking at me, going back into our bathroom, coming out and looking at me. I am not sure if he even realized Ken was there watching the whole thing.
Anyway, the next morning, when I got up and went over to the sink to brush my teeth, I stepped in a big puddle of PEE!!! Evidently NAKED CRAZY MAN had been “going to the bathroom” like he said, only instead of going in the bathroom, he went in our floor. I was SOOOOO mad!!! I guess that’s what I get for actually going to sleep for once!
Now, any time someone I know is in the hospital and says they will be alright staying by themselves and that they don’t need a family member to spend the night in the hospital with them, I tell them my NAKED CRAZY MAN story. People always laugh when I tell it – I guess it is a funny story, now. Not when it was happening, though. When it was happening, it was just one more thing in two solid years of CRAZY!
Letters From Dad
(WARNING...tissues required.)
As Ken began to grow weaker, I worried about what would be Jesse’s and Benjamin’s memories of their Dad’s final words to them. I asked Ken if he would like to do letters for them. At first, he shook his head. But about twenty minutes or so later, he said that he would like to do that. So, I brought the laptop into the bedroom and typed, with tears pouring down my face, as he dictated. We did the one for Benjamin first.
Ken was absolutely exhausted when we finished Benjamin’s letter, so we put the laptop away and said we would do Jesse’s letter later. Unfortunately, “later” came at the hospital a day or so later. Ken’s mind was very muddled and he was in severe pain, so Jesse’s letter is shorter and a little “fuzzier”. The sailboat picture Ken refers to was something Benjamin painted for his Dad at his appointment with the counselor. I put it up on Ken’s hospital wall so he could see it whenever he was awake. Now, it is framed and on the mantel in my office.
I saved the letters to give to the boys later. Would have probably saved them longer than I did, but Pastor Keith mentioned the letters during Ken’s funeral. I think I gave them to Jesse and Benjamin at Christmas, the month after Ken died. They are heartbreakingly sweet and tender, and I am so glad that Ken did them for his boys.
As Ken began to grow weaker, I worried about what would be Jesse’s and Benjamin’s memories of their Dad’s final words to them. I asked Ken if he would like to do letters for them. At first, he shook his head. But about twenty minutes or so later, he said that he would like to do that. So, I brought the laptop into the bedroom and typed, with tears pouring down my face, as he dictated. We did the one for Benjamin first.
To Benjamin from Dad("Scooter" is what Ken called Benjamin when he was a baby.)
Me and Jesse talk about you having all the energy you do, clapping and jumping, can’t sit still. It makes us tired to watch you. You’d be on the couch sleeping and I’d get up and go by and look at you and I can’t think how I could ever leave you. And I tell the Lord so. I tell the Lord that I’ve got to stay and take care of y’all. You and Jesse and your Mom. And I believed at the time that the Lord was going to let me stay. But God knows best. It’s not what I want, it’s what He wants . I prayed many days, that the Lord would leave me to take care of you, knowing that Mom could take care of you too, but it just wouldn’t be the same. Selfish that I wanted to be here for us to all be together, but it’s not always possible. Maybe God has other plans, I don’t know as of yet. But it doesn’t look too good. As time goes on, the doctor said the treatments were not doing much good. And I still believe, but sometimes it gets me down. My faith is not as strong. I can’t pray. But there are thousands of others praying for me. I was sitting on the couch and remember you clapping your hands, like an almost nine-year-old would be doing, with all that energy. But I didn’t feel good. I really felt bad. And I think I hollered at you and it made you cry. That’s when Mom reminded that you were just a little one, but I was thinking about myself. So since then, I’ve tried not to holler at you. Let you do what a nine-year-old would do. And I had you scared to do what a nine-year-old would do. And I wanted to say “I’m sorry”. I do like that because you don’t know what to do and I don’t know what to do. You can’t comprehend what I’m going through. And I don’t know how to do with you, so we kind of withdraw. You feel funny coming up to me and hugging me and I feel funny saying things to you, so we are kind of growing apart. I don’t know if there’s any way to change that or not. We may be lost in outer space. I hurt a lot. You know how it is when you hurt. But I love you, Benjamin, and I know you love me. We just don’t know what to do—there’s a gap. We can say “I love you” and we do, but we can’t express it, at least I can’t. I love you and I’m proud to be your Dad. And I love Jesse and I’m proud to be his dad. And I’m proud that y’all get along so good. He’s your only brother. I’m proud that y’all look after each other and he takes care of you and you take care of him. You can’t do some of the things Jesse does to take care of you and he can’t do some of the things you do to take care of him. You take care of each other’s needs. I don’t know what Jesse would do without you. So if it’s up to God to take me, as bad as I hate it, then He can have me. It’s His choice. Though we don’t know why. He’s the one that’s created us, and He knows the best things to do. We may never know why, but you’ve just got to keep on going. Keep on bowing down to worship our God through Jesus. Help your Mama. She’s going to have it hard. I know you are going to have it hard. But time will go on. Things will be better. Y’all gotta keep on living. Life goes on. I love you, little Scooter!
Love, Dad
(Dictated by Ken Lunsford, November 4 or 5, 2004)
Ken was absolutely exhausted when we finished Benjamin’s letter, so we put the laptop away and said we would do Jesse’s letter later. Unfortunately, “later” came at the hospital a day or so later. Ken’s mind was very muddled and he was in severe pain, so Jesse’s letter is shorter and a little “fuzzier”. The sailboat picture Ken refers to was something Benjamin painted for his Dad at his appointment with the counselor. I put it up on Ken’s hospital wall so he could see it whenever he was awake. Now, it is framed and on the mantel in my office.
To Jesse from Dad:
Jesse, it’s been a long time. We thought that everything would be okay, well I did, anyway. Not knowing which way the Lord was going to take us. I remember Benjamin running off and leaving us and he’s a hot shot on that bicycle. Me and you, we couldn’t keep up with him. I remember he’d get away ahead of us. I can only tell you things that happened in a short distance back. You know I love you and how glad I am to be your dad. You have a good dad and I have two good sons and I have a good dad. You have a good Mamaw and Papaw and Grandmom and Granddad. You’re the one to be strong. Time goes on—life goes on. I know you won’t ever forget me, but you must go on. Talk your Mama into keeping some of our things. Try to keep our blue van—it’s a good one. Try to keep some of our houses, but it doesn’t really matter. If you can’t, you can’t. I know they make trouble for your Mom. Just do what you have to do because I won’t be around to help you. It will be up to your mother. And an extra house or so may not be in your blood. Me and Mom thinks differently. It don’t mean she’s right and I’m wrong. Just different. We’re typing this up here at the hospital and I don’t know exactly where my mind is. Try to look after your brother. Your brother loves you. He needs you like I told him, he needs you and you need him. Y’all always gotta stay close. Looking at little Benjamin’s picture he brought up. Must be from Sunday school. Picture of a sailboat. You know I love you and if I could change things, I would. The Lord let us be together longer than we suspected. But it’s God’s will—God’s purpose. I’d like to be around to watch you grow up, but it don’t much look like it will be like that. I can’t tell you how much I love you. I don’t have the words. There’s no way to describe it. I would have liked to go to the lake and go swimming more this year and go bike riding, but we didn’t get to go. I love you forever and ever.
Love, Dad
(Dictated by Ken Lunsford, November 8, 2004)
I saved the letters to give to the boys later. Would have probably saved them longer than I did, but Pastor Keith mentioned the letters during Ken’s funeral. I think I gave them to Jesse and Benjamin at Christmas, the month after Ken died. They are heartbreakingly sweet and tender, and I am so glad that Ken did them for his boys.
Difficult Days
By now, Ken was spending most of his time in the hospital bed. He wasn’t able to stand or sit for long, so I would either bathe him in the bed or let him sit on the shower chair and I would shower with him. He was so weak that he couldn’t even get up to go to the bathroom. The fact that he had to use a urinal didn’t bother me, but the day I had to go and buy my husband diapers was one of the saddest, most soul-crushing days of my life. This was what that terrible disease called cancer had reduced Ken to. It took a vibrant, self-sufficient man and took away his ability to even care for his own basic needs. Not only did it rob Ken of his health, but now, it had also robbed him of his dignity. STUPID CANCER!!!!!
The hospital bed was in our bedroom, at the foot of our bed. When we put the hospital bed back in, I had to push all of the regular bedroom furniture around so Ken would have a path from his bed to the bathroom and to the living room if he felt like getting up. It was a tight squeeze – especially when he was hooked up to “Bill” (which was most of the time, now). I guess that was another reason he didn’t try to move around much. It was pretty difficult to navigate around all of his medical equipment. One night, as a matter of fact, I got up in the middle of the night to empty Ken’s urinal and I kicked the wheel of his walker and broke my toe. One more thing...
During this time, Ken couldn’t stand to have me out of his sight for even a minute. He was so afraid that he would need something and I wouldn’t hear him call for me. I was always close enough that I could hear him, but he was scared, so I spent most of my daylight hours sitting in a chair in the bedroom. I guess the boys were riding the school buses to and from school...I surely don’t remember leaving Ken to go and get them, and I know that no one picked them up for me or came and stayed with Ken so I could go. Anyway, I would sit in the bedroom all day unless he dropped off to sleep. Then I would dash downstairs to do a load of wash, or run out to the mailbox, and pray that Ken didn’t wake up before I got back. I really did not mind sitting in the room with him so he wouldn’t be scared, but all he wanted me to do was “sit”. He didn’t want me to watch TV or read a book or talk on the phone. And some days, he would gripe and growl orders at me in rapid-fire succession and them complain that I wasn’t doing them fast enough. His voice would take on a purely hateful tone that was so out of character for Ken. I know he was frustrated, worried, scared and hurting, but SO WAS I – and exhausted besides. I don’t remember sleeping during those days. I do remember jumping up every few minutes or so to take care of something Ken wanted or needed. I don’t remember taking care of Jesse and Benjamin much...poor kids. I wasn’t the best Mom right then.
The hospital bed was in our bedroom, at the foot of our bed. When we put the hospital bed back in, I had to push all of the regular bedroom furniture around so Ken would have a path from his bed to the bathroom and to the living room if he felt like getting up. It was a tight squeeze – especially when he was hooked up to “Bill” (which was most of the time, now). I guess that was another reason he didn’t try to move around much. It was pretty difficult to navigate around all of his medical equipment. One night, as a matter of fact, I got up in the middle of the night to empty Ken’s urinal and I kicked the wheel of his walker and broke my toe. One more thing...
During this time, Ken couldn’t stand to have me out of his sight for even a minute. He was so afraid that he would need something and I wouldn’t hear him call for me. I was always close enough that I could hear him, but he was scared, so I spent most of my daylight hours sitting in a chair in the bedroom. I guess the boys were riding the school buses to and from school...I surely don’t remember leaving Ken to go and get them, and I know that no one picked them up for me or came and stayed with Ken so I could go. Anyway, I would sit in the bedroom all day unless he dropped off to sleep. Then I would dash downstairs to do a load of wash, or run out to the mailbox, and pray that Ken didn’t wake up before I got back. I really did not mind sitting in the room with him so he wouldn’t be scared, but all he wanted me to do was “sit”. He didn’t want me to watch TV or read a book or talk on the phone. And some days, he would gripe and growl orders at me in rapid-fire succession and them complain that I wasn’t doing them fast enough. His voice would take on a purely hateful tone that was so out of character for Ken. I know he was frustrated, worried, scared and hurting, but SO WAS I – and exhausted besides. I don’t remember sleeping during those days. I do remember jumping up every few minutes or so to take care of something Ken wanted or needed. I don’t remember taking care of Jesse and Benjamin much...poor kids. I wasn’t the best Mom right then.
Restless night for Ken last night. Not much sleep for either of us. I gave him a shower this afternoon and he stayed up most all afternoon, so maybe he’ll sleep tonight. So far, NOT! He’s still restless and hurting. Just took some Lortab – maybe it will kick in soon. He wants me in the room with him, but he doesn’t want me to watch TV or read. Won’t let me go in the other room because he’s afraid I won’t hear him if he needs something. He doesn’t go lacking for what he needs or wants, but he acts like I’m ignoring him. Only seems to ask for things when I’m busy doing fourteen other things. If I don’t drop what I’m doing and do what he wants (even if what I’m doing is something he asked for earlier), he gets all in a snit. He is running me CRAZY! Feels like I’m chasing myself around in circles. (Melinda’s Journal, November 2, 2004)
Ken seemed a little less demanding today. Could be he was just worn out. I hope he can rest tonight. (Melinda’s Journal, November 3, 2004)
Ken has seemed a little more relaxed today. Hasn’t had to have me in sight every minute. His sister brought us some walkie-talkies. As soon as they’re charged, I’ll be able to move around the house more freely. He’ll be sure I can hear him if he needs me. (Melinda’s Journal, November 4, 2004)
Living in the Land of Denial
I have struggled with myself for a while over whether or not to include this. It is about a frustrating situation that occurred during the entirety of Ken’s illness. I do not want to hurt anyone’s feelings, but it is a situation that I think a lot of families of terminally ill patients probably deal with. It is called “DENIAL”.
Now...I have always been a very realistic person. I look at each situation that comes my way, even the horrible ones, as clearly as I can and then I deal with it. That is what I did when Ken got sick. After the initial panic, I researched Linitis Plastica to see just what kind of a monster we would be fighting. The information I found was absolutely grim. Said that even with total stomach resection (removal), the chance of long term survival was less than 4 percent. At that point, Ken’s doctors were not even considering resection because they truly believed that he would only survive a couple of months.
So, after getting a clear picture of what we were facing, I begged God to heal Ken if it was in His Will to do so. Then, I squared my shoulders, took a deep breath, and vowed to help Ken fight this thing as hard as he could for as long as he could, no matter what it took.
All during Ken’s illness and treatments, certain of his family members just didn’t seem to “get” how gravely ill he was. When he outlived the doctors’ original predictions for survival, it was as if life for the rest of the Lunsfords went back to normal. Word started spreading that “God was going to heal Kenny”, or that God had, in fact, already healed him. In the mean time, we were still battling this monstrous disease on a daily basis. It didn’t seem to occur to Ken’s family that he was a bit different than he had been before he got sick. One family member called and asked him to climb up on her roof and fix something. Another called and asked if Ken would come and help him shovel a load of chicken manure. Ken was missing major body parts, was sick and weak from surgeries, chemo and radiation treatments, and had to be sustained artificially through a tube into his intestines, and they thought it was perfectly reasonable to ask him to climb up ladders and wade around in chicken poop!!
Their denial also kept most of Ken’s family from being as helpful as I needed them to be during that time. ( I say “most” because one of our nieces was EXTREMELY helpful and supportive.) Remember, in addition to managing Ken’s care and treatment, I was also trying to care for our two young sons. Ken’s illness effected Jesse and Benjamin profoundly and unfortunately, sometimes it manifested itself physically. Jesse began having breathing problems and severe headaches. Benjamin complained of more tummy-aches and even began having “sinking spells” where he would go pale and pass out in the floor. Ken had so many doctor appointments, tests and treatments, we were usually at Erlanger Hospital at least two to three days a week. So when Jesse or Benjamin would call, needing to come home, I couldn’t leave their Dad. I would have to call family members and ask them to go get the boys from school and stay with them until Ken and I could get back home.
I can understand already having plans, but the “reasons” I was being given as to why Ken’s family members couldn’t take care of the boys for me included such important things as “I have to get a haircut”, and “I’m going out to eat with some other family members”. And it didn’t just happen once or twice, but it seemed to be the same, every time I called. It was as if they didn’t realize how sick Ken still was so it didn’t occur to them that WE NEEDED HELP! It absolutely made me want to SCREAM!!! I wanted to say to them, “I’m really sorry that Ken’s terminal illness is such a burden for you that you would have to consider changing your plans to take care of HIS CHILDREN!!!!!” Instead, I would tell them “never mind” and call either friends from our church or Benjamin’s school and ask if they could help until my Mama could get up there. (I never had to ask “if” Mama could come. She rearranged her life for us on many occasions during those two years. God Bless my Mama!)
Sadly, it wasn’t until the last couple of weeks of Ken’s life that I think they finally realized how seriously ill he had been for the past two years. I am still amazed that it took so long. Maybe if it had been one of my children, I would have lived in denial too...I doubt it, though.
Now...I have always been a very realistic person. I look at each situation that comes my way, even the horrible ones, as clearly as I can and then I deal with it. That is what I did when Ken got sick. After the initial panic, I researched Linitis Plastica to see just what kind of a monster we would be fighting. The information I found was absolutely grim. Said that even with total stomach resection (removal), the chance of long term survival was less than 4 percent. At that point, Ken’s doctors were not even considering resection because they truly believed that he would only survive a couple of months.
So, after getting a clear picture of what we were facing, I begged God to heal Ken if it was in His Will to do so. Then, I squared my shoulders, took a deep breath, and vowed to help Ken fight this thing as hard as he could for as long as he could, no matter what it took.
All during Ken’s illness and treatments, certain of his family members just didn’t seem to “get” how gravely ill he was. When he outlived the doctors’ original predictions for survival, it was as if life for the rest of the Lunsfords went back to normal. Word started spreading that “God was going to heal Kenny”, or that God had, in fact, already healed him. In the mean time, we were still battling this monstrous disease on a daily basis. It didn’t seem to occur to Ken’s family that he was a bit different than he had been before he got sick. One family member called and asked him to climb up on her roof and fix something. Another called and asked if Ken would come and help him shovel a load of chicken manure. Ken was missing major body parts, was sick and weak from surgeries, chemo and radiation treatments, and had to be sustained artificially through a tube into his intestines, and they thought it was perfectly reasonable to ask him to climb up ladders and wade around in chicken poop!!
Their denial also kept most of Ken’s family from being as helpful as I needed them to be during that time. ( I say “most” because one of our nieces was EXTREMELY helpful and supportive.) Remember, in addition to managing Ken’s care and treatment, I was also trying to care for our two young sons. Ken’s illness effected Jesse and Benjamin profoundly and unfortunately, sometimes it manifested itself physically. Jesse began having breathing problems and severe headaches. Benjamin complained of more tummy-aches and even began having “sinking spells” where he would go pale and pass out in the floor. Ken had so many doctor appointments, tests and treatments, we were usually at Erlanger Hospital at least two to three days a week. So when Jesse or Benjamin would call, needing to come home, I couldn’t leave their Dad. I would have to call family members and ask them to go get the boys from school and stay with them until Ken and I could get back home.
I can understand already having plans, but the “reasons” I was being given as to why Ken’s family members couldn’t take care of the boys for me included such important things as “I have to get a haircut”, and “I’m going out to eat with some other family members”. And it didn’t just happen once or twice, but it seemed to be the same, every time I called. It was as if they didn’t realize how sick Ken still was so it didn’t occur to them that WE NEEDED HELP! It absolutely made me want to SCREAM!!! I wanted to say to them, “I’m really sorry that Ken’s terminal illness is such a burden for you that you would have to consider changing your plans to take care of HIS CHILDREN!!!!!” Instead, I would tell them “never mind” and call either friends from our church or Benjamin’s school and ask if they could help until my Mama could get up there. (I never had to ask “if” Mama could come. She rearranged her life for us on many occasions during those two years. God Bless my Mama!)
Sadly, it wasn’t until the last couple of weeks of Ken’s life that I think they finally realized how seriously ill he had been for the past two years. I am still amazed that it took so long. Maybe if it had been one of my children, I would have lived in denial too...I doubt it, though.
Lots of company for Ken yesterday. Too much, really. I think Ken’s mom is FINALLY beginning to realize how sick Ken is. I caught her holding Ken’s hand and crying. Then she cried again when she hugged me good bye. Even Ken’s dad, in his own strange way, sort of hugged me when he left. I guess its hitting home with all of them. About time... (Melinda’s Journal, October 31, 2004)
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