After ten loooooong days in the hospital, they finally let Ken go home. Now the plan was to do another round of chemotherapy while Ken's body was recovering from the surgery. After that, we could look at the possibility of radiation at the place where Dr. Valle removed his stomach and attached his esophagus to his intestines. We went home and fell back into the routine of night-time tube feedings and trips to the chemo lab. These chemo treatments only lasted about two hours each, so that was better. It also didn't make Ken lose hair, so he started getting pretty fuzzy again. He eventually got all of his hair back, but it wasn't as pretty and curly as it had been before he got sick.
In reading back over many of these entries, It seems like we spent every waking minute fighting that terrible disease. And while it did take up the biggest majority of our lives, there were other things going on too. I guess one of the most important things we were dealing with, other than the cancer, had to do with Jesse. He was having a particularly hard time with his Dad being sick. He wouldn't talk to us about it, so it had begun manifesting itself physically. He had started complaining with frequent headaches and stomach aches. In fact, the day Ken and I were at the hospital trying to get his pre-op testing prior to the stomach resection, Jesse's school called and said he needed to come home because he had a severe headache. I remember my feelings of complete helplessness that day. I couldn't leave Ken--he had to have all of that testing done. I couldn't get in touch with any of Ken's family. I finally ended up calling Joan, our pastor's wife and she went and got Jesse and let him stay at her house until we got home from the hospital. That was one of many days that I felt like a failure as a mother. I was doing all I could to keep Ken healthy. My poor boys kept getting short-changed over and over again. I just never felt like I was "enough" for everybody.
Jesse was our first-born. He was the only, much loved, much petted child for four and a half years before Benjamin was born. But, oh, how he loved that little brother when he arrived. Jesse would tell people that Benjamin was "his baby". Started calling him "Bro" before Benjamin could even walk. It was a precious bond between them. As Jesse got old enough for school, we started noticing that he was having difficulty getting along and making friends. He had a disastrous kindergarten year, so we asked the school to let him have a "do-over". The next year in kindergarten was better, but Jesse still just never seemed to mesh with the other kids. He had few friends, was easily frustrated and had frequent angry outbursts. He was a completely different little guy at school than he was at home. We didn't know why things were suddenly so hard for Jesse.
Jesse's difficulties continued as he got older. School just NEVER seemed to get easier for him. Academically he did great. He was a great reader and had a precocious grasp of the English language. But social skills continued to plague him. He just didn't seem to "get" the group dynamic. His reactions to social situations were often inappropriate and his classmates begin to consider him "weird", and many of them began to shun him. It broke my heart, but any parent-teacher conferences we had usually left me more upset than I had been before I went. Teacher after teacher would simply say things like, "he's spoiled", or "he needs more limits"... always laying the reason for his difficulties squarely in our laps with no helpful suggestions and no offers of assistance. We just resigned ourselves that Jesse was "different", and consequently, would continue having a hard time in school.
Then, when Jesse was in fifth grade, about half-way through Ken's illness, a teacher FINALLY suggested that there might be something going on besides Jesse being an "ornery kid". She saw me in the hallway one day and asked me to stop by her room during her break. I went in, full of dread, wondering what Jesse had done now. She was very pleasant and said, "Mrs. Lunsford, I've been watching Jesse and I think that maybe he has Asperger's Syndrome". I blinked and said, "Okay, what's that?" She went on to explain that it was in the autism spectrum, but was on the high-functioning end. I was still trying to get past the word "autism" when she handed me an article from a magazine. My eyes fell on a list of characteristics of children with Asperger's Syndrome, and as I read, I found Jesse in those pages. It was as if the article had been written with Jesse in mind. I was STUNNED! There WAS a reason for the way Jesse behaved and it had a name!!!! The teacher asked if it would be alright for her to start the process to have Jesse tested by the school psychometrist so that a determination could be made as to special education services. I nodded, signed the release form, and headed to the car. I remember crying all the way home. I cried from sorrow that my child could have a real disability. I cried from relief that there really was something wrong, but it could be treated. None of it EVER had been Jesse's fault!
Trying to Un-Jumble
It’s funny what you remember, and don’t remember, during certain times in your life. The things I remember about Ken’s second hospital stay, after we moved to the oncology floor, are sporadic and strangely, some of the most vivid of the memories have nothing to do with Ken’s illness at all. For example. . . I remember going to buy a clock because the hospital room didn’t have one. I needed to pick up a few other things–and I needed to “get the heck outa Dodge” for a little while. Someone (though I can’t remember who) came and stayed with Ken so I could run a couple of errands. I guess I was gone about two or three hours. Ken would get upset if I was gone much longer than that.
Another “non-hospital” memory was a miraculous event. We had probably been in the hospital for the better part of a week when I heard on the news that Elizabeth Smart, the little girl who had been kidnapped from her home in Utah 9 months earlier, had been found ALIVE! I remember thanking God for restoring her to her family.
I remember a lot of other things during that ten-day hospital stay, but unfortunately, their order is all jumbled up. Anyway, here goes. . .
1. Ken slept more after I starting “helping” him get his pain meds. Every time I went close to his bed, I would push the button on the pain pump. And, whenever he had a visitor, I always told them to push the button too. He caught me at it once and got put out with me, but he needed to rest, and so did I.
2. We didn’t have nearly as many visitors during this hospitalization as we did during the first one. I guess people were busy or maybe didn’t want to disturb us.
3. I ate supper several times that week with my best friend, Jan. She was a nurse at Erlanger and did telephone triage on the pediatric floor. Whenever she was on duty, I would go upstairs and eat with her. She and her co-workers were so precious to let me hang out with them and talk, or cry, depending on how hard the day had been.
4. It took FOREVER to get the results back from the biopsies on Ken’s lymph nodes. I remember one night, after pestering the tar out of Dr. Valle’s office for a couple of days, he came by the hospital to see me after hours. I was either in the break room or up on Jan’s floor when he came. Instead of leaving me a message with the nurses, he WAITED on the oncology floor until I came back (we’re talking well after 9:00 p.m. by the time I got there). He said that the biopsy results were still not back, but he knew how concerned I was and wanted to talk to me in person. (Such a kind, compassionate man.) He also told me what I really already knew – that the surgery was not intended to “cure” Ken’s cancer. Rather, it was to buy him a little more time. I asked, “How much time?” He said, “Only God knows”.
5. Ken’s brother and his wife were visiting when Dr. Valle finally came by a day or so later with the biopsy results. He told us that no cancerous cells were found on any of Ken’s other organs, but that over half of the lymph nodes they biopsied were positive for cancer. Ken’s sister-in-law acted like it was the greatest news in the world, and I guess the part about it not being on Ken’s other organs was good news. But I remember being so puzzled at her reaction. She was a nurse – how could she think that positive lymph nodes were good news? If cancer was in the lymph system, it could go ANYWHERE!
I guess the worst memory while we were on the oncology floor is what my tortured mind would do whenever I tried to sleep. I don’t know if it was due to exhaustion from lack of sleep, or if God was helping me with hard decisions that would come later on down the road, but over and over and OVER, in my mind, I found myself planning Ken’s funeral. I knew what songs would be sung, that it would be at the church, not the mortuary, that Keith would preside, I even knew what kind of casket I would pick!!!!! I kept trying to get the thoughts out of my mind, but they would not leave me alone. And then I felt terrible for even having those thoughts in the first place. I was in such a dark, sad, lonely place. I’m glad God was there with me.
Another “non-hospital” memory was a miraculous event. We had probably been in the hospital for the better part of a week when I heard on the news that Elizabeth Smart, the little girl who had been kidnapped from her home in Utah 9 months earlier, had been found ALIVE! I remember thanking God for restoring her to her family.
I remember a lot of other things during that ten-day hospital stay, but unfortunately, their order is all jumbled up. Anyway, here goes. . .
1. Ken slept more after I starting “helping” him get his pain meds. Every time I went close to his bed, I would push the button on the pain pump. And, whenever he had a visitor, I always told them to push the button too. He caught me at it once and got put out with me, but he needed to rest, and so did I.
2. We didn’t have nearly as many visitors during this hospitalization as we did during the first one. I guess people were busy or maybe didn’t want to disturb us.
3. I ate supper several times that week with my best friend, Jan. She was a nurse at Erlanger and did telephone triage on the pediatric floor. Whenever she was on duty, I would go upstairs and eat with her. She and her co-workers were so precious to let me hang out with them and talk, or cry, depending on how hard the day had been.
4. It took FOREVER to get the results back from the biopsies on Ken’s lymph nodes. I remember one night, after pestering the tar out of Dr. Valle’s office for a couple of days, he came by the hospital to see me after hours. I was either in the break room or up on Jan’s floor when he came. Instead of leaving me a message with the nurses, he WAITED on the oncology floor until I came back (we’re talking well after 9:00 p.m. by the time I got there). He said that the biopsy results were still not back, but he knew how concerned I was and wanted to talk to me in person. (Such a kind, compassionate man.) He also told me what I really already knew – that the surgery was not intended to “cure” Ken’s cancer. Rather, it was to buy him a little more time. I asked, “How much time?” He said, “Only God knows”.
5. Ken’s brother and his wife were visiting when Dr. Valle finally came by a day or so later with the biopsy results. He told us that no cancerous cells were found on any of Ken’s other organs, but that over half of the lymph nodes they biopsied were positive for cancer. Ken’s sister-in-law acted like it was the greatest news in the world, and I guess the part about it not being on Ken’s other organs was good news. But I remember being so puzzled at her reaction. She was a nurse – how could she think that positive lymph nodes were good news? If cancer was in the lymph system, it could go ANYWHERE!
I guess the worst memory while we were on the oncology floor is what my tortured mind would do whenever I tried to sleep. I don’t know if it was due to exhaustion from lack of sleep, or if God was helping me with hard decisions that would come later on down the road, but over and over and OVER, in my mind, I found myself planning Ken’s funeral. I knew what songs would be sung, that it would be at the church, not the mortuary, that Keith would preside, I even knew what kind of casket I would pick!!!!! I kept trying to get the thoughts out of my mind, but they would not leave me alone. And then I felt terrible for even having those thoughts in the first place. I was in such a dark, sad, lonely place. I’m glad God was there with me.
Step-Down
The intern had spoken with me the next morning and told me that he was going to have Ken moved to the step-down unit. Thank goodness–that meant I could be with him in the room. He said they would call when they were ready to move him. Daddy had to get back home, so I spent the better part of the day alone, but that was okay. Sometimes it was a relief not to have to talk to anyone. Anyway, I waited, and waited, AND WAITED. Every time I called up to the unit, they said, “It will be just a few more minutes and they’ll have him moved. Well, that went on the better part of ALL DAY. Finally, Keith came to visit. It wasn’t visiting time, but since he was our pastor, they would let him go up in between times. He told me to come go up to the unit with him. We stopped at the desk to have the attendant call the unit and let them know we were coming up. They said, “Oh, we moved him already. Didn’t anyone call and let her know?” (GRRRRRRR!!!) The attendant gave me the room number and directions how to get there and I took off. (I don’t remember Keith going to the room with me. . . maybe he had to make a visiting session in another unit or something. I do know that he came by later on in the evening.)
After maneuvering the maze of hallways and making sure I got on the right elevator, I finally managed to find the step-down unit. The nurse at the desk told me where the room was. When I walked in the door, poor Ken was sitting up in the middle of the bed with the telephone in his lap, crying. When he saw me, he said, “Oh, thank God you’re here! I was trying to remember your phone number!” He said he had been up in the room for “a long time” and he couldn’t understand why I wasn’t coming. I don’t know how long he was actually up there before I found him, but to him, it was a long time and he felt abandoned once more. (GRRRRRR!!!! AGAIN!!!!!)
Anyway, he calmed down a little and I tried to convince him to try and get some rest. Unfortunately, that didn’t last very long. I don’t know if Ken was just still upset from being in the ICU, or if the meds they gave him were making him act up, or if it was just the results of the pain he was in (as usual, he was refusing to take anything for pain. They had him hooked up to a pain pump, but he would NOT push the button), but he was as ornery as I have EVER seen him. The room was long and narrow, so my chair was behind his bed. If he couldn’t see me, he was barking orders at me so that I’d have to jump up and come to the bed. He would not let me sit down for more than five minutes at a time. I was in tears by the time he finally dropped off to sleep. That only lasted about an hour and a half and he was awake and snarling at me again. One time he made a comment about me “not taking care of him like I should”. I whirrled around at him and hollered, “Oh really? Then who is that fat woman who has been running herself ragged ever since you got sick!!!!?” I know I shouldn’t have said it. . . it was so mean to talk that way to someone so sick. But I guess the fear and exhaustion had finally gotten the better of me. We apologized to each other, but that exchange between us still haunts me to this day.
Okay. . . finally out of ICU. Step-down had to be better, right? Well, not so much. First of all, most of the nurses absolutely and totally ignored us. The first one we had was wonderful. She was very attentive and compassionate. After she left, though, it was like we were in nowhere land. This was supposed to be a monitored bed, but they never hooked Ken up to any of the machines other than the little ET finger ( you know, the little clip they put on the end of your finger that glows red–reminded me of ET) that monitored his oxygen intake. His heart could have completely stopped beating and they would never have known it. I had to go out to the desk and almost pitch a screaming fit to get anyone to come and empty Ken’s catheter bag. It was so full that it was round like a basketball and on the verge of exploding and making a huge mess all over the floor. I had told them earlier that if they would just bring me a measuring cup, I could empty it, but they said, “Oh, no, we can’t let family members do that. We need to make sure it’s done correctly.” So instead of letting me take care of it, they let it get so full that they couldn’t get an accurate measurement anyway because it was pushing back up into the tube. (GRRRRRRRR!!!! ONE MORE TIME!)
Then, the guy who was supposed to be our nurse that night had the nerve to lie to me the next morning and say, “I checked in on y’all around 3:00 a.m., but you were both sleeping, so I didn’t want to bother you.” HUH?! First of all, Ken was in the hospital in what was supposed to be a monitored bed. It is the nurses' JOB to bother him to take vitals every four hours. Secondly, we didn’t sleep that night. And even if we had, I had become such a light sleeper since Ken got sick that I would have heard him if he had opened the door. He had NOT checked on us all night, I knew it, and I told him so. He kept insisting that he had, so I finally just said, “Whatever” and he left. It wasn’t long after that they called and said they had a bed ready for Ken on the oncology floor. That nurse ended up chasing us up the hallway trying to get all of his paperwork (that he should have done the night before) caught up.
All-in-all, I’d have to say that the whole ICU – Step-down experience was one big GRRRRRRR!!!!!! :(
After maneuvering the maze of hallways and making sure I got on the right elevator, I finally managed to find the step-down unit. The nurse at the desk told me where the room was. When I walked in the door, poor Ken was sitting up in the middle of the bed with the telephone in his lap, crying. When he saw me, he said, “Oh, thank God you’re here! I was trying to remember your phone number!” He said he had been up in the room for “a long time” and he couldn’t understand why I wasn’t coming. I don’t know how long he was actually up there before I found him, but to him, it was a long time and he felt abandoned once more. (GRRRRRR!!!! AGAIN!!!!!)
Anyway, he calmed down a little and I tried to convince him to try and get some rest. Unfortunately, that didn’t last very long. I don’t know if Ken was just still upset from being in the ICU, or if the meds they gave him were making him act up, or if it was just the results of the pain he was in (as usual, he was refusing to take anything for pain. They had him hooked up to a pain pump, but he would NOT push the button), but he was as ornery as I have EVER seen him. The room was long and narrow, so my chair was behind his bed. If he couldn’t see me, he was barking orders at me so that I’d have to jump up and come to the bed. He would not let me sit down for more than five minutes at a time. I was in tears by the time he finally dropped off to sleep. That only lasted about an hour and a half and he was awake and snarling at me again. One time he made a comment about me “not taking care of him like I should”. I whirrled around at him and hollered, “Oh really? Then who is that fat woman who has been running herself ragged ever since you got sick!!!!?” I know I shouldn’t have said it. . . it was so mean to talk that way to someone so sick. But I guess the fear and exhaustion had finally gotten the better of me. We apologized to each other, but that exchange between us still haunts me to this day.
Okay. . . finally out of ICU. Step-down had to be better, right? Well, not so much. First of all, most of the nurses absolutely and totally ignored us. The first one we had was wonderful. She was very attentive and compassionate. After she left, though, it was like we were in nowhere land. This was supposed to be a monitored bed, but they never hooked Ken up to any of the machines other than the little ET finger ( you know, the little clip they put on the end of your finger that glows red–reminded me of ET) that monitored his oxygen intake. His heart could have completely stopped beating and they would never have known it. I had to go out to the desk and almost pitch a screaming fit to get anyone to come and empty Ken’s catheter bag. It was so full that it was round like a basketball and on the verge of exploding and making a huge mess all over the floor. I had told them earlier that if they would just bring me a measuring cup, I could empty it, but they said, “Oh, no, we can’t let family members do that. We need to make sure it’s done correctly.” So instead of letting me take care of it, they let it get so full that they couldn’t get an accurate measurement anyway because it was pushing back up into the tube. (GRRRRRRRR!!!! ONE MORE TIME!)
Then, the guy who was supposed to be our nurse that night had the nerve to lie to me the next morning and say, “I checked in on y’all around 3:00 a.m., but you were both sleeping, so I didn’t want to bother you.” HUH?! First of all, Ken was in the hospital in what was supposed to be a monitored bed. It is the nurses' JOB to bother him to take vitals every four hours. Secondly, we didn’t sleep that night. And even if we had, I had become such a light sleeper since Ken got sick that I would have heard him if he had opened the door. He had NOT checked on us all night, I knew it, and I told him so. He kept insisting that he had, so I finally just said, “Whatever” and he left. It wasn’t long after that they called and said they had a bed ready for Ken on the oncology floor. That nurse ended up chasing us up the hallway trying to get all of his paperwork (that he should have done the night before) caught up.
All-in-all, I’d have to say that the whole ICU – Step-down experience was one big GRRRRRRR!!!!!! :(
Intensive Care -- Intensive Heartache
I need to back up just a little. . . after everyone left, but before Daddy and I tried to settle in for the night, ICU called and said that they FINALLY had Ken in a bed and I could come up and see him for just a minute. It took them so long to get him out of recovery and into an ICU bed, it was well past the final visiting session by the time they called.
Daddy and I went up to ICU. My heart jumped when I saw Ken. He was so pale and gaunt. . . he honestly didn’t look alive. I ran to the bed to make sure he was breathing. The nurse tried to wake him up, but he was still very heavily medicated, so he barely even opened his eyes. I looked down and saw that his hands were tied to the bed. I asked the nurse why he was restrained. She said that when he had begun coming to in the recovery room, he had yanked out his breathing tube and his NG tube. They tied his hands down to make sure he wouldn’t pull out any of the IVs.
Knowing how upset Ken always got whenever he thought I wasn’t there, I said, “When he wakes up and finds his hands tied down, he is going to be scared. Can I please stay with him until he wakes up?” “No”, the nurse said FIRMLY. I persisted. “Please let me stay. I promise I won’t be a bit of trouble. I don’t even need a chair. I’ll just sit down in the floor in the corner over there. He’s going to need me here when he wakes up.” “No”, she said again and went on to recite “hospital policy” to me – “we can’t make exceptions for one family or we’ll have to make exceptions for EVERYONE”. Yeah, yeah, yeah. . . I knew she was right, and I knew it made sense, but what I knew most is that I needed to stay with Ken. She showed no signs of relenting, so I kissed Ken’s bald little head, told him I loved him and that I would be just downstairs.
Daddy and I had been resting with the lights out for about 45 minutes when the ICU desk attendant stuck his head in the door and said, “Mrs. Lunsford? Your husband is awake and VERY agitated. They want you to come up to the unit and see if you can get him to calm down.” DUH!!!!!!! Hadn’t I just finished telling them this would happen? I took off running up to the unit.
I could hear Ken hollering when I got to the door. I ran in his room and he was wearing a look of sheer terror on his face. He was relieved to see me, but was so upset. I did my best to soothe him – held his hand, stroked his face, begged him to calm down. He was in such a state that it took about ten more minutes before I think he finally realized that he was okay. He kept saying, “Where were you? I couldn’t find you! They wouldn’t let me come find you!” It was SO heartbreaking – it reminded me of a child waking up out of a nightmare screaming for someone to come and rescue him. I kept on trying to comfort him until his breathing and heart rate went back down to normal. He asked me if I was going to stay with him. I looked at the nurse, who shook her head emphatically. I tried to sound cheerful as I said, with an aching heart, “No, Baby, I can’t stay with you in the ICU. But they are going to take really good care of you. And you’ll probably be asleep anyway. I’ll see you first thing in the morning.” Ken looked at me with the saddest eyes and said, “But I want you to stay.” He sounded so hurt and abandoned. I kissed him and said, “You sleep now. I love you and I’ll be back tomorrow morning.” He nodded his head, but I could tell he wasn’t convinced. I sobbed my way back to the waiting room.
Ken only stayed in ICU for a day and a half, but it was the worst day and a half of any he ever spent in the hospital. He was so agitated at me not being there, I think he was causing real problems for the nurses. Thankfully, he was doing well enough physically that one of the interns (I can’t remember if it was Dr. Schlabach’s intern or Dr. Valle’s) decided to go ahead and send him to the step-down unit. I tried to tell them they should have let me stay.
Daddy and I went up to ICU. My heart jumped when I saw Ken. He was so pale and gaunt. . . he honestly didn’t look alive. I ran to the bed to make sure he was breathing. The nurse tried to wake him up, but he was still very heavily medicated, so he barely even opened his eyes. I looked down and saw that his hands were tied to the bed. I asked the nurse why he was restrained. She said that when he had begun coming to in the recovery room, he had yanked out his breathing tube and his NG tube. They tied his hands down to make sure he wouldn’t pull out any of the IVs.
Knowing how upset Ken always got whenever he thought I wasn’t there, I said, “When he wakes up and finds his hands tied down, he is going to be scared. Can I please stay with him until he wakes up?” “No”, the nurse said FIRMLY. I persisted. “Please let me stay. I promise I won’t be a bit of trouble. I don’t even need a chair. I’ll just sit down in the floor in the corner over there. He’s going to need me here when he wakes up.” “No”, she said again and went on to recite “hospital policy” to me – “we can’t make exceptions for one family or we’ll have to make exceptions for EVERYONE”. Yeah, yeah, yeah. . . I knew she was right, and I knew it made sense, but what I knew most is that I needed to stay with Ken. She showed no signs of relenting, so I kissed Ken’s bald little head, told him I loved him and that I would be just downstairs.
Daddy and I had been resting with the lights out for about 45 minutes when the ICU desk attendant stuck his head in the door and said, “Mrs. Lunsford? Your husband is awake and VERY agitated. They want you to come up to the unit and see if you can get him to calm down.” DUH!!!!!!! Hadn’t I just finished telling them this would happen? I took off running up to the unit.
I could hear Ken hollering when I got to the door. I ran in his room and he was wearing a look of sheer terror on his face. He was relieved to see me, but was so upset. I did my best to soothe him – held his hand, stroked his face, begged him to calm down. He was in such a state that it took about ten more minutes before I think he finally realized that he was okay. He kept saying, “Where were you? I couldn’t find you! They wouldn’t let me come find you!” It was SO heartbreaking – it reminded me of a child waking up out of a nightmare screaming for someone to come and rescue him. I kept on trying to comfort him until his breathing and heart rate went back down to normal. He asked me if I was going to stay with him. I looked at the nurse, who shook her head emphatically. I tried to sound cheerful as I said, with an aching heart, “No, Baby, I can’t stay with you in the ICU. But they are going to take really good care of you. And you’ll probably be asleep anyway. I’ll see you first thing in the morning.” Ken looked at me with the saddest eyes and said, “But I want you to stay.” He sounded so hurt and abandoned. I kissed him and said, “You sleep now. I love you and I’ll be back tomorrow morning.” He nodded his head, but I could tell he wasn’t convinced. I sobbed my way back to the waiting room.
Ken only stayed in ICU for a day and a half, but it was the worst day and a half of any he ever spent in the hospital. He was so agitated at me not being there, I think he was causing real problems for the nurses. Thankfully, he was doing well enough physically that one of the interns (I can’t remember if it was Dr. Schlabach’s intern or Dr. Valle’s) decided to go ahead and send him to the step-down unit. I tried to tell them they should have let me stay.
Surgery # 2. . . the BIG one.
I have really been dragging my feet about writing about Ken's surgery. One reason is that it pulls up a whole lot of scary, dark feelings that turn me all inside-out. The other reason is that I simply cannot remember a lot of what occurred that day. I even pulled out my journal from that time to help refresh my memory, but the entries describe very little of those events. They mostly just say how scared and sad I was. I’ll do my best to piece it together.
We had to be at the hospital early–around 7:30 a.m., I think. Ken’s surgery wasn’t scheduled until 9:30 or so, but they wanted him there early to get him ready. My journal says that my Mama, Michaelann, David, and his wife all came the night before the surgery. My Daddy came up for the surgery the next day. I think David's wife may have kept the boys at home during the actual surgery. I know that they didn’t go to school that day. Jesse, poor thing, was so worried and scared, he was making himself sick. No way he could have made it through a whole day of school. Benjamin was worried and scared too, but just didn’t know how to express it. His anxiety came out in perpetual motion. Not just the kind you usually see from boys his age, but a more frenzied type. Like if he sat still for a minute, he would dissolve in a heap. He would turn flips, spin round and round in the floor, pace from one room to another. Even when he was standing still talking to you, he would swing his arms back and forth. (He still does that to this very day when he’s worried or nervous about something.) I’m sure from the outside looking in, people who didn’t know what was going on would think he was hyperactive. But it was absolutely anxiety-driven. Thank goodness he had an understanding teacher.
I don’t think we went to the same place for pre-op as we did the first time. I know for a fact we didn’t go into that tiny little room with the woman who didn’t smile. We had gone the week before for all of Ken’s blood work and stuff, so they basically just had to sign him in and have him change into a gown. Not sure if we were in the same waiting room either.
I do not remember what Ken and I said to each other before they took him to the surgery suite. If I had to guess, I’d say we didn’t say much of anything. We were both so scared and exhausted by then, it was a real effort to even put a whole sentence together. I’m sure Pastor Keith was there and probably prayed for us, but I just don’t remember. I guess Dr. Valle spoke with us before the surgery. . . again, I can’t recall.
I do remember that the nurse called about 45 minutes after they took him into surgery saying that they had Ken all prepped and sedated and that Dr. Valle was ready to begin. Since Ken had no hair anywhere on his body now and they didn’t have to shave him, prep time was much shorter this time around. She said she would call periodically and let us know how things were going. We settled in to wait.
What I said and did that day, as well as who I saw and spoke to. . . that’s all completely gone from my memory bank. I know that the boys were there at least part of the day because we all (me, Jesse, Benjamin and Michaelann) started coloring a kitty-cat poster to pass the time. I finished it during the next ten days that we lived at the hospital. I would color to keep from screaming while Ken slept fitfully and tried to recover. I still have the poster–it hangs on the wall in my closet. It’s a little blotchy in places. . . teardrops and markers don’t mix. :(
After what seemed an eternity, Dr. Valle came to let me know that the surgery was over and Ken was in recovery. He had removed Ken’s entire stomach and his spleen. The ligaments between the stomach and spleen had drawn up, making it hard for Dr. Valle to get good margins on the spleen. He said Ken could live without a spleen, so he just went ahead and removed it too. He also removed several lymph nodes for biopsy. He said he didn’t see any cancer on any of Ken’s other organs, so that was good news. But, he added, there could be microscopic cells he wasn’t able to see. That’s why the biopsies. They would be taking Ken to Intensive Care from the recovery room and would let me know when I could see him. The nurse in the waiting room told us we should go to the ICU waiting area now. So, we gathered up our stuff and headed that way.
As soon as we got to the ICU waiting room, it seems like everyone who had been waiting with me sort of vanished. I think David and his wife had to go on back home that night, and I guess Michaelann went with them. Mama was going to take the boys home since they wouldn’t be able to see Ken anyway. All of Ken’s family left too. I guess it was a good thing everybody left, because the waiting room was PACKED!!! The only thing we could find to sit on was a padded bench with no back. Mama asked me who was going to be staying with me that night. I remember looking at her with a really puzzled look and saying, “Nobody, I guess”. It had not even occurred to me that I might need someone to stay with me. When Daddy heard that, he said that he would stay. Bless his sweet heart, he had been planning to go on home that night, but he told Mama that there was no way he would let me stay up there by myself. Daddy and I finally found two reclining chairs in the children’s waiting area. I told the desk attendant where we would be and we settled in for the night.
We had to be at the hospital early–around 7:30 a.m., I think. Ken’s surgery wasn’t scheduled until 9:30 or so, but they wanted him there early to get him ready. My journal says that my Mama, Michaelann, David, and his wife all came the night before the surgery. My Daddy came up for the surgery the next day. I think David's wife may have kept the boys at home during the actual surgery. I know that they didn’t go to school that day. Jesse, poor thing, was so worried and scared, he was making himself sick. No way he could have made it through a whole day of school. Benjamin was worried and scared too, but just didn’t know how to express it. His anxiety came out in perpetual motion. Not just the kind you usually see from boys his age, but a more frenzied type. Like if he sat still for a minute, he would dissolve in a heap. He would turn flips, spin round and round in the floor, pace from one room to another. Even when he was standing still talking to you, he would swing his arms back and forth. (He still does that to this very day when he’s worried or nervous about something.) I’m sure from the outside looking in, people who didn’t know what was going on would think he was hyperactive. But it was absolutely anxiety-driven. Thank goodness he had an understanding teacher.
I don’t think we went to the same place for pre-op as we did the first time. I know for a fact we didn’t go into that tiny little room with the woman who didn’t smile. We had gone the week before for all of Ken’s blood work and stuff, so they basically just had to sign him in and have him change into a gown. Not sure if we were in the same waiting room either.
I do not remember what Ken and I said to each other before they took him to the surgery suite. If I had to guess, I’d say we didn’t say much of anything. We were both so scared and exhausted by then, it was a real effort to even put a whole sentence together. I’m sure Pastor Keith was there and probably prayed for us, but I just don’t remember. I guess Dr. Valle spoke with us before the surgery. . . again, I can’t recall.
I do remember that the nurse called about 45 minutes after they took him into surgery saying that they had Ken all prepped and sedated and that Dr. Valle was ready to begin. Since Ken had no hair anywhere on his body now and they didn’t have to shave him, prep time was much shorter this time around. She said she would call periodically and let us know how things were going. We settled in to wait.
What I said and did that day, as well as who I saw and spoke to. . . that’s all completely gone from my memory bank. I know that the boys were there at least part of the day because we all (me, Jesse, Benjamin and Michaelann) started coloring a kitty-cat poster to pass the time. I finished it during the next ten days that we lived at the hospital. I would color to keep from screaming while Ken slept fitfully and tried to recover. I still have the poster–it hangs on the wall in my closet. It’s a little blotchy in places. . . teardrops and markers don’t mix. :(
After what seemed an eternity, Dr. Valle came to let me know that the surgery was over and Ken was in recovery. He had removed Ken’s entire stomach and his spleen. The ligaments between the stomach and spleen had drawn up, making it hard for Dr. Valle to get good margins on the spleen. He said Ken could live without a spleen, so he just went ahead and removed it too. He also removed several lymph nodes for biopsy. He said he didn’t see any cancer on any of Ken’s other organs, so that was good news. But, he added, there could be microscopic cells he wasn’t able to see. That’s why the biopsies. They would be taking Ken to Intensive Care from the recovery room and would let me know when I could see him. The nurse in the waiting room told us we should go to the ICU waiting area now. So, we gathered up our stuff and headed that way.
As soon as we got to the ICU waiting room, it seems like everyone who had been waiting with me sort of vanished. I think David and his wife had to go on back home that night, and I guess Michaelann went with them. Mama was going to take the boys home since they wouldn’t be able to see Ken anyway. All of Ken’s family left too. I guess it was a good thing everybody left, because the waiting room was PACKED!!! The only thing we could find to sit on was a padded bench with no back. Mama asked me who was going to be staying with me that night. I remember looking at her with a really puzzled look and saying, “Nobody, I guess”. It had not even occurred to me that I might need someone to stay with me. When Daddy heard that, he said that he would stay. Bless his sweet heart, he had been planning to go on home that night, but he told Mama that there was no way he would let me stay up there by myself. Daddy and I finally found two reclining chairs in the children’s waiting area. I told the desk attendant where we would be and we settled in for the night.
God's Hands
It was the day before surgery--Sunday, March 2, 2003. Everything was all set. . . at least we hoped it was. We went to church, as was our usual habit. Ken and I were in the "Ambassadors" Sunday School Class, which was comprised of mostly married couples, like us. People were making special efforts to find us and let us know they were going to be praying for us the next week. I nodded my head a lot, because if I tried to speak, I would break down in tears.
I tried real hard to pay attention to what Gary, our Sunday School teacher was saying, but my mind was such a jumble. I was SO SCARED. About half-way through the lesson, I heard the piano upstairs playing "God on the Mountain". The tears I had been fighting all morning escaped and poured down my cheeks. I had mentioned that song to either Keith or Joan the week before. Said that it had come to mean a lot to me in recent weeks. Well, they arranged with David, our Music Minister, to sing that for our family that day.
Before Keith started his sermon, he said that he wanted Ken, me and the boys to come to the front of the church for a few moments. He said he felt led by God to have special prayer for us as we prepared for the surgery the next day. He said if anyone else wanted to come to the front and pray with us, they could. I think the entire congregation, choir and all came to the altar. Everyone that was close enough put their hands on us and the ones who weren't close enough put their hands on the people in front of them. I don't remember the words spoken in that prayer, but I DO remember feeling the hands of God touching us and embracing us through the hands of those precious, precious people.
Here are the words to "God on the Mountain". It still comforts me to this very day.
I tried real hard to pay attention to what Gary, our Sunday School teacher was saying, but my mind was such a jumble. I was SO SCARED. About half-way through the lesson, I heard the piano upstairs playing "God on the Mountain". The tears I had been fighting all morning escaped and poured down my cheeks. I had mentioned that song to either Keith or Joan the week before. Said that it had come to mean a lot to me in recent weeks. Well, they arranged with David, our Music Minister, to sing that for our family that day.
Before Keith started his sermon, he said that he wanted Ken, me and the boys to come to the front of the church for a few moments. He said he felt led by God to have special prayer for us as we prepared for the surgery the next day. He said if anyone else wanted to come to the front and pray with us, they could. I think the entire congregation, choir and all came to the altar. Everyone that was close enough put their hands on us and the ones who weren't close enough put their hands on the people in front of them. I don't remember the words spoken in that prayer, but I DO remember feeling the hands of God touching us and embracing us through the hands of those precious, precious people.
Here are the words to "God on the Mountain". It still comforts me to this very day.
God On The Mountain (words and music by Tracy G. Dartt)
Life is easy when you're up on the mountain
And you've got peace of mind like you've never known.
But then things change and you're down in the valley.
Don't lose faith for you're never alone.
For the God on the mountain is still God in the valley.
When things go wrong, He'll make it right.
And the God of the good times
is still God in the bad times.
The God of the day is still God in the night.
You talk of faith when you're up on the mountain.
Oh but the talk comes easy when life's at its best.
But it's down in the valley of trials and temptation
That's when faith is really put to the test.
For the God on the mountain is still God in the valley.
When things go wrong, He'll make it right.
And the God of the good times
is still God in the bad times.
The God of the day is still God in the night.
Making New Memories
As I was running around trying to make sure everything was taken care of before Ken’s surgery and hospital stay, I started feeling all sideways, wishing the boys had some better memories to dwell on during the time we would be gone. The past several months had been strictly devoted to fighting Ken’s cancer. Unfortunately, Jesse and Benjamin were often “left by the wayside” as that horrible terminal illness train rumbled down the tracks. I mentioned it to Ken and he said, “You know, I had been thinking the same thing. Maybe we should take the boys out of school for a couple of days and just go somewhere.”
I called the school and told the principal what we were doing and asked her to let the teachers know. Then I went online to find a place for us to go. It had to be somewhere close by–close enough we could get Ken back to Erlanger Hospital if anything unforeseen happened. We wanted it to be somewhere we hadn’t been before so that the memories for Jesse and Benjamin would be “brand-new”. I finally found the “Wild Animal Safari” in Pine Mountain, GA, just a couple of hours away from Ringgold. I called and got us a hotel reservation and we took off. (It’s a really good thing we had a van at the time. Packing a feeding pump and pole, cans of formula for two days and medical supplies takes up a LOT of room.)
I remember how Jesse and Benjamin chattered on the way to Pine Mountain. They were stoked about getting to miss school. I think Benjamin was more excited about getting to stay in a “HO-tel” than he was about the safari park. It was such a comfort for Ken and me to see the boys laughing and more relaxed than they had been since Ken was diagnosed. This had been a GOOD idea.
We got to Pine Mountain and decided to just go directly to the safari park and worry about finding our hotel after. It was one of those parks that you drive through because most of the animals were walking around loose. The predatory ones–lions, tigers, and bears (oh my!) were, of course, in cages that you could see from the driving path. We could either drive through in our own vehicle or we could wait and go on one of the safari vans. We decided to drive through. We bought some animal food, which looked like huge chunks of dry dog-food and smelled way worse. They told us to be sure to hold the food out to the animals with a flat hand, so they wouldn’t think our fingers were food too (WHAT?!!!!). They also told us, “Whatever you do, do NOT feed the ostriches and emus”.
We decided that Ken should drive so I could work the video camera. I also didn’t want him to be feeding the animals and getting all germy since his immune system at the time was basically non-existent. Off down the path we went. Most of the animals walking around were domestic in nature. There were lots of different types of cattle, as well as sheep, goats and several different kinds of deer. There were also little prairie dogs running everywhere. If you stopped your car, the animals that were hungry would come to your windows for a treat. The ones who weren’t hungry would just sort of give you a disinterested stare. I remember this one HUGE long-horned steer (the span of his horns was as long as our van, no kidding) just stood in the path, looking at us like “What are YOU looking at?” We had to go around him because he wasn’t going to budge and we surely didn’t want him to get mad and ram our van.
We fed some of the deer and some of the cattle. The boys decided they didn’t like being slobbered on, so guess who ended up doing most of the animal feeding? One time, I dropped my bag of food in the floor of the van and bent down to retrieve it. When I sat back up, a BUFFALO was sticking his whole head in my window!!!!!! I grabbed some food and held it out to him on a flat hand like they had said. Well, he sticks his tongue out (it’s about three feet long) and proceeds to wrap his entire tongue around my arm trying to find the food that is in my hand (BTW, did you know that buffalos have scratchy tongues, like cats?). Picture this. . . the buffalo has his whole head in our van, his whole tongue is wrapped around my arm up to my elbow. I am SCREAMING. . . the boys are laughing hysterically and Ken just sits there smiling. I try pushing that critter’s head out the window, but of course, I can’t budge him–he’s a BUFFALO and he weighs probably more than our van. After what seems like a year, Ken slowly eases on down the path and Mr. Buffalo loses interest in us. I am covered from head to toe in nasty old buffalo slobber and Ken and the boys are still laughing. (Even I have to admit. . . it was pretty funny.)
Ken drives on down the road as I’m giving myself a bath with baby wipes and trying to compose myself after the buffalo incident. An ostrich (or emu, I don’t know how to tell them apart) strolls up to the van on Ken’s side. Remembering what they said at the office, we rolled up our windows and didn’t offer any food. That’s when we found out WHY we weren’t supposed to feed the ostriches/emus. This bird proceeds to start pecking Ken’s car window as hard as he could! I was afraid he was going to break the window. When we still don’t offer any food, he starts trying to eat the weather stripping around the window. We had to leave so he wouldn’t damage the van. He chased us down the road for a while. Ostriches/emus are MEAN!
The next morning, we decided to go to FDR's "Little White House" in Warm Springs, GA, which was one town over.
It was very interesting, but historical in nature, so of course, the boys quickly lost interest. I think they thought the neatest thing was that they still had the actual roll of toilet paper that had been in President Roosevelt's cabin the last time he had been there. It was still hanging on the wall, only now it is encased in plexiglass.
Anyway, Jesse and Benjamin had the most fun racing Ken on his scooter. Since the attaction involved a lot of walking, they offered scooters for people with disabilities. Ken was pretty weak and tired from the animal park, so we got him a scooter. After we had seen everything, Ken and the boys spent about an hour or so racing up and down the pathways. Ken let Jesse and Benjamin get on the scooter with him and "drive". They had such a good time and it did my heart a world of good to see them all smiling again.
The ride back to Ringgold was peaceful. All of my "men" were asleep in their seats and I felt a contentment I hadn't felt in a very long time. Thank you, Father God, for such sweet memories, even in the midst of such pain.
I called the school and told the principal what we were doing and asked her to let the teachers know. Then I went online to find a place for us to go. It had to be somewhere close by–close enough we could get Ken back to Erlanger Hospital if anything unforeseen happened. We wanted it to be somewhere we hadn’t been before so that the memories for Jesse and Benjamin would be “brand-new”. I finally found the “Wild Animal Safari” in Pine Mountain, GA, just a couple of hours away from Ringgold. I called and got us a hotel reservation and we took off. (It’s a really good thing we had a van at the time. Packing a feeding pump and pole, cans of formula for two days and medical supplies takes up a LOT of room.)
I remember how Jesse and Benjamin chattered on the way to Pine Mountain. They were stoked about getting to miss school. I think Benjamin was more excited about getting to stay in a “HO-tel” than he was about the safari park. It was such a comfort for Ken and me to see the boys laughing and more relaxed than they had been since Ken was diagnosed. This had been a GOOD idea.
We got to Pine Mountain and decided to just go directly to the safari park and worry about finding our hotel after. It was one of those parks that you drive through because most of the animals were walking around loose. The predatory ones–lions, tigers, and bears (oh my!) were, of course, in cages that you could see from the driving path. We could either drive through in our own vehicle or we could wait and go on one of the safari vans. We decided to drive through. We bought some animal food, which looked like huge chunks of dry dog-food and smelled way worse. They told us to be sure to hold the food out to the animals with a flat hand, so they wouldn’t think our fingers were food too (WHAT?!!!!). They also told us, “Whatever you do, do NOT feed the ostriches and emus”.
We decided that Ken should drive so I could work the video camera. I also didn’t want him to be feeding the animals and getting all germy since his immune system at the time was basically non-existent. Off down the path we went. Most of the animals walking around were domestic in nature. There were lots of different types of cattle, as well as sheep, goats and several different kinds of deer. There were also little prairie dogs running everywhere. If you stopped your car, the animals that were hungry would come to your windows for a treat. The ones who weren’t hungry would just sort of give you a disinterested stare. I remember this one HUGE long-horned steer (the span of his horns was as long as our van, no kidding) just stood in the path, looking at us like “What are YOU looking at?” We had to go around him because he wasn’t going to budge and we surely didn’t want him to get mad and ram our van.
We fed some of the deer and some of the cattle. The boys decided they didn’t like being slobbered on, so guess who ended up doing most of the animal feeding? One time, I dropped my bag of food in the floor of the van and bent down to retrieve it. When I sat back up, a BUFFALO was sticking his whole head in my window!!!!!! I grabbed some food and held it out to him on a flat hand like they had said. Well, he sticks his tongue out (it’s about three feet long) and proceeds to wrap his entire tongue around my arm trying to find the food that is in my hand (BTW, did you know that buffalos have scratchy tongues, like cats?). Picture this. . . the buffalo has his whole head in our van, his whole tongue is wrapped around my arm up to my elbow. I am SCREAMING. . . the boys are laughing hysterically and Ken just sits there smiling. I try pushing that critter’s head out the window, but of course, I can’t budge him–he’s a BUFFALO and he weighs probably more than our van. After what seems like a year, Ken slowly eases on down the path and Mr. Buffalo loses interest in us. I am covered from head to toe in nasty old buffalo slobber and Ken and the boys are still laughing. (Even I have to admit. . . it was pretty funny.)
Ken drives on down the road as I’m giving myself a bath with baby wipes and trying to compose myself after the buffalo incident. An ostrich (or emu, I don’t know how to tell them apart) strolls up to the van on Ken’s side. Remembering what they said at the office, we rolled up our windows and didn’t offer any food. That’s when we found out WHY we weren’t supposed to feed the ostriches/emus. This bird proceeds to start pecking Ken’s car window as hard as he could! I was afraid he was going to break the window. When we still don’t offer any food, he starts trying to eat the weather stripping around the window. We had to leave so he wouldn’t damage the van. He chased us down the road for a while. Ostriches/emus are MEAN!
The next morning, we decided to go to FDR's "Little White House" in Warm Springs, GA, which was one town over.
It was very interesting, but historical in nature, so of course, the boys quickly lost interest. I think they thought the neatest thing was that they still had the actual roll of toilet paper that had been in President Roosevelt's cabin the last time he had been there. It was still hanging on the wall, only now it is encased in plexiglass.
Anyway, Jesse and Benjamin had the most fun racing Ken on his scooter. Since the attaction involved a lot of walking, they offered scooters for people with disabilities. Ken was pretty weak and tired from the animal park, so we got him a scooter. After we had seen everything, Ken and the boys spent about an hour or so racing up and down the pathways. Ken let Jesse and Benjamin get on the scooter with him and "drive". They had such a good time and it did my heart a world of good to see them all smiling again.
The ride back to Ringgold was peaceful. All of my "men" were asleep in their seats and I felt a contentment I hadn't felt in a very long time. Thank you, Father God, for such sweet memories, even in the midst of such pain.
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