We went back to see Dr. Schlabach. Ken described his symptoms and Dr. S. did blood work and a physical exam. He said Ken would need a new CT. So, off to the imaging center we went–AGAIN. I had learned after the first CT that Ken could NOT drink two glasses of that gloppy stuff if he wanted to. So I had to take a syringe and push it through his feeding tube. If you’ve never been to an imaging center before, they have a main waiting room where everybody waits and then they have a couple of more private waiting rooms where you wait once you have changed into one of those lovely hospital gowns. Only problem is, they have one private waiting room for women and another private waiting room for men. There was not a place where Ken and I could go in private where I could push the stuff through his feeding tube. We couldn’t do it in the main waiting room, not only for sanitary reasons, but because it would have grossed other people out. We always ended up in the men’s private waiting room. We always had to apologize to the other guys who were waiting and for the most part, they were always gracious and accommodating. I could tell, though, some of them were a little uncomfortable with me in there while they waited in their states of undress.
We went back to see Dr. S. a couple of days later. He said the CT was “unchanged”. “Well,” I said, “I guess that’s good news, but Ken is still hurting. What now?” Dr. S. said that we would need to go back to the gastroenterologist for a new endoscopy. So, his nurse called and got us an appointment for that. The gastroenterologist’s office was all the way over in North Chattanooga and they could schedule the scope quicker at the hospital over there, so that’s where we went. There I was, again, in a waiting room while Ken was having an endoscopy done. That was the type of scope he had the day we first found out he had cancer. I was nervous–to the point of tears–but I was determined to keep myself together for Ken’s sake. When the scope was over, the Dr. (I wonder why I can’t remember his name) came out and said that he didn’t see any new cancer, but that he had taken biopsies again and he would call Dr. Schlabach with the results. We went home to wait–AGAIN.
A couple of days after that, Dr. Schlabach’s nurse called to tell us that the endoscopy and biopsies did not indicate the presence of any new cancer. What should have been cause for relief was rapidly becoming cause for frustration. Everybody was saying there was no new cancer, but Ken was hurting worse every day. I told the nurse that I was glad to hear positive results from the endoscopy, but that there was SOMETHING WRONG with Ken. She told me we could come back in and talk to Dr. S. again and see what his recommendation would be now.
Back we went to Dr. Schlabach’s office. Ken was having such trouble walking, that I was having to let him out at the door of the Medical Mall so he could sit down on a bench and wait until I was able to park the car. I think I even borrowed one of the hospital’s wheelchairs that day so Ken could ride up. When Dr. S. came in, he patiently went back over all of Ken’s results. He said that there was no indication of new cancer. I said, “It is his back that is hurting. Maybe we should have a bone scan.” Dr. S. replied, “It is very rare that Ken’s kind of cancer would go to bone.” “Okay”, I countered, “then why is Ken’s back hurting and why can’t he bear weight on his left leg?” Dr. S. said it was probably residual weakness from the chemo and radiation. I said, “Shouldn’t we do a bone scan to make sure that’s all it is?” He said (AGAIN!!!), “It’s just so rare for this type of cancer to metastasize (spread) to the bones.” He then went on to say that bone scans are very expensive tests and he knows how much we’ve spent already.
By this time, I was about ready to scream. I looked over at Ken’s pained, sunken eyes. Then I looked straight in the doctor’s face and said, as calmly as I could manage, “Dr. Schlabach, there is something wrong with my husband. I think we need a bone scan. Now, I am a large woman–it would probably take three or four men to move me. But I am NOT going to take one step out of this office until you schedule Ken for a bone scan!” He smiled (I guess he thought I was playing, but I absolutely was not) and said, “Okay, I’ll tell the nurse to schedule it if it will put your mind at ease.” We left the office with an order and appointment for a bone scan.
"Hollow-Eyed Look"
The first time I noticed the “hollow-eyed look” on Ken’s face again, I was sure I had imagined it. It was during Easter drama rehearsal and the lighting was all different, so I attributed the shadows to that. I put it out of my mind until a couple of days later, when I noticed it again, while we were at home. I asked Ken if he was feeling okay that day. He said, “Yes”, but the “hollow-eyed look” was definitely there. I didn’t want to end up in full-scale panic mode, but I was definitely concerned.
I started watching Ken more closely than I had in the past few months, trying to see if any old symptoms returned or any new symptoms developed. For the most part, it was only the “hollow-eyed look”. I kept attributing it to him being overly tired, but I was really worried. I remember on Easter Sunday, we went to Mama & Daddy’s house like we always did. I was in the kitchen and Ken was sitting on the couch in the living room. I called Mama over and said, “Mama, look at Ken’s face. He’s sick again, isn’t he?” I don’t recall if she agreed with me, but I think she said that he looked tired. In truth, I didn’t need her to agree with me. Deep in the pit of my soul I knew the cancer was back. I guess I just needed to say it out loud so that I could begin to deal with it.
Ken kept assuring me that he was fine. He had just been working too hard on his rental properties and was tired. I would nod my head at him and go scream into my pillow. Then one day, Ken began to limp. Just a slight limp at first, hardly noticeable. I didn’t want to pester him about it, so I let it go for about a week. The limp was getting progressively more pronounced. Trying for an air of nonchalance, I said, “Baby, why are you limping?” Ken replied, “Well, my back has been hurting. I’m having a hard time putting weight on my left leg.” (Room starts swirling, but I’m still trying to be calm.) “How long has it been hurting?” I asked. “Quite a while,” he admitted, “been getting worse and worse”. (Trying to take looong, slow breaths now, so as not to hyperventilate.) “Don’t you think it would be a good idea if I called the Dr. and got you an appointment in the next couple of days?” I asked, never expecting him to agree. “Yeah”, he said, “probably wouldn’t be a bad idea.” Then we just kind of looked at each other in silence for a little bit. I think what wasn’t spoken between us that day screamed way louder than what we actually did say. I called Dr. Schlabach’s office and they told us to come in the next week. Here we go again...
I started watching Ken more closely than I had in the past few months, trying to see if any old symptoms returned or any new symptoms developed. For the most part, it was only the “hollow-eyed look”. I kept attributing it to him being overly tired, but I was really worried. I remember on Easter Sunday, we went to Mama & Daddy’s house like we always did. I was in the kitchen and Ken was sitting on the couch in the living room. I called Mama over and said, “Mama, look at Ken’s face. He’s sick again, isn’t he?” I don’t recall if she agreed with me, but I think she said that he looked tired. In truth, I didn’t need her to agree with me. Deep in the pit of my soul I knew the cancer was back. I guess I just needed to say it out loud so that I could begin to deal with it.
Ken kept assuring me that he was fine. He had just been working too hard on his rental properties and was tired. I would nod my head at him and go scream into my pillow. Then one day, Ken began to limp. Just a slight limp at first, hardly noticeable. I didn’t want to pester him about it, so I let it go for about a week. The limp was getting progressively more pronounced. Trying for an air of nonchalance, I said, “Baby, why are you limping?” Ken replied, “Well, my back has been hurting. I’m having a hard time putting weight on my left leg.” (Room starts swirling, but I’m still trying to be calm.) “How long has it been hurting?” I asked. “Quite a while,” he admitted, “been getting worse and worse”. (Trying to take looong, slow breaths now, so as not to hyperventilate.) “Don’t you think it would be a good idea if I called the Dr. and got you an appointment in the next couple of days?” I asked, never expecting him to agree. “Yeah”, he said, “probably wouldn’t be a bad idea.” Then we just kind of looked at each other in silence for a little bit. I think what wasn’t spoken between us that day screamed way louder than what we actually did say. I called Dr. Schlabach’s office and they told us to come in the next week. Here we go again...
Living Life
Over the next several months, things were pretty calm. The boys were in school, Ken was working at his rental business some and I was volunteering at Boynton’s Media Center. Every so often, we’d make a trip to Erlanger for blood work, or a check up for Ken, but for at least a little while, we existed much as we had before Ken got sick.
In the fall, we were even able to take a family vacation with Mama, & Daddy and David and his family. We went to Gulf Shores, AL. Of course, before we could agree to go, I had to check out the area and make sure that there was a hospital in the area that could offer the level of care Ken would require if something unforeseen were to happen. There was one in Foley, which was just up the road from Gulf Shores. So, we packed all of our stuff, which now included “Bill” and all of his paraphernalia, plus I think 3 cases of liquid nutrition, and headed down the road.
I can’t say that it was the most pleasant vacation I’ve ever had. It was nice to get away, don’t get me wrong. The beach was lovely and the weather was beautiful. And it should have been great spending time with my family, but somehow, it just didn’t turn out that way. I won’t go into detail, but let me just say that it was during that week that we discovered much about the TRUE unpleasant nature and disposition of a certain family member. I think by the time the week was up, even my sweet, even-tempered Daddy was ready to cuss. Unfortunately, the behavior of that week was a harbinger of more heartaches to come. We did, by the way, end up at the hospital in Foley that week, but it wasn’t for Ken. David had a kidney stone. What a way to spend a vacation!
Christmas came and went without incident. We welcomed 2004 with more peace and hope than we had 2003. Ken had done so much better than his doctors ever thought he would, it was easy to believe that life could just continue this peacefully for the next 40 years or so.
Come springtime, Ken was asked to portray Jesus in our church’s Easter production. He had been asked to be Jesus before, at our previous church too. When he had his hair and his beard, he sort of had a “Jesus-look” going on. The boys were both in the production too, and I was helping out behind the scenes, so we were all busy. We had to modify the play to exclude the crucifixion scene. With his feeding tube, Ken couldn’t be shirtless (didn’t bother us-we were used to it, but the tube sort of freaked other people out), and I was worried that he didn’t have enough strength left in his torso to be lifted up onto a cross. So, the lights cut out as the soldiers were taking Jesus away. Ken didn’t appear again until he appeared as Jesus resurrected. It was very touching. Even though I was behind the stage and didn’t get to see it directly, I remember what a moving experience it was. When it was over, I sobbed into my hands as Keith told the audience what a miracle it was that the man who portrayed Jesus on that day had been told the year before that he would die within weeks. God had graciously given Ken another year and several months. What better way to celebrate the resurrection of our Lord than with our very own miracle?
Yes, it was truly a miracle. I believed it then and I believe it to this day, with my whole heart. But some of my sobs on that Easter Sunday were coming from another place entirely. Just that week, during the drama rehearsals, I was stunned to see the “hollow-eyed look” creeping back into my sweet husband’s face.
In the fall, we were even able to take a family vacation with Mama, & Daddy and David and his family. We went to Gulf Shores, AL. Of course, before we could agree to go, I had to check out the area and make sure that there was a hospital in the area that could offer the level of care Ken would require if something unforeseen were to happen. There was one in Foley, which was just up the road from Gulf Shores. So, we packed all of our stuff, which now included “Bill” and all of his paraphernalia, plus I think 3 cases of liquid nutrition, and headed down the road.
I can’t say that it was the most pleasant vacation I’ve ever had. It was nice to get away, don’t get me wrong. The beach was lovely and the weather was beautiful. And it should have been great spending time with my family, but somehow, it just didn’t turn out that way. I won’t go into detail, but let me just say that it was during that week that we discovered much about the TRUE unpleasant nature and disposition of a certain family member. I think by the time the week was up, even my sweet, even-tempered Daddy was ready to cuss. Unfortunately, the behavior of that week was a harbinger of more heartaches to come. We did, by the way, end up at the hospital in Foley that week, but it wasn’t for Ken. David had a kidney stone. What a way to spend a vacation!
Christmas came and went without incident. We welcomed 2004 with more peace and hope than we had 2003. Ken had done so much better than his doctors ever thought he would, it was easy to believe that life could just continue this peacefully for the next 40 years or so.
Come springtime, Ken was asked to portray Jesus in our church’s Easter production. He had been asked to be Jesus before, at our previous church too. When he had his hair and his beard, he sort of had a “Jesus-look” going on. The boys were both in the production too, and I was helping out behind the scenes, so we were all busy. We had to modify the play to exclude the crucifixion scene. With his feeding tube, Ken couldn’t be shirtless (didn’t bother us-we were used to it, but the tube sort of freaked other people out), and I was worried that he didn’t have enough strength left in his torso to be lifted up onto a cross. So, the lights cut out as the soldiers were taking Jesus away. Ken didn’t appear again until he appeared as Jesus resurrected. It was very touching. Even though I was behind the stage and didn’t get to see it directly, I remember what a moving experience it was. When it was over, I sobbed into my hands as Keith told the audience what a miracle it was that the man who portrayed Jesus on that day had been told the year before that he would die within weeks. God had graciously given Ken another year and several months. What better way to celebrate the resurrection of our Lord than with our very own miracle?
Yes, it was truly a miracle. I believed it then and I believe it to this day, with my whole heart. But some of my sobs on that Easter Sunday were coming from another place entirely. Just that week, during the drama rehearsals, I was stunned to see the “hollow-eyed look” creeping back into my sweet husband’s face.
Holding My Breath
After Ken recovered from being so sick from the radiation, he went several months with no significant changes. In fact, if it weren’t for the fact that he had a six-inch-long tube protruding from his abdomen and the nightly tube feedings, you wouldn’t know there was anything wrong with him at all. He began taking back over more and more of his rental business from his sister. Things calmed down a few notches and life almost went back to “normal”.
Ken was doing so well, in fact, that I briefly considered going back to work. I had quit my job at the Pre-K the day he was diagnosed. My "job" had become looking after Ken and doing everything I could to keep him as healthy as I could for as long as I could. When he started going “back to work”, and we didn’t have weekly trips to Erlanger Hospital, it kind of left me twiddling my thumbs. I started looking at the want ads to see if I could find anything close by, but I had a niggling little feeling way down deep in my soul that told me “not yet”. So, I prayed about it and felt like God was telling me not to start anything new.
I had been a parent volunteer at Boynton Elementary almost as long as the boys had been going there and had been helping out whenever Ken wasn’t so bad off. I decided I would just continue doing that, only now on a more regular basis. So, I started working in the Media Center every afternoon from about noon until school dismissed. That way I could be there when Benjamin got out and then we could jump in the car and make it across town in just enough time to pick up Jesse at the middle school.
That’s how things went for the next several months. I SOOO wanted to believe that it would continue this way and that Ken would be well again. And I tried believing it–truly I did. But I always felt like I was walking around on my tiptoes, holding my breath, gritting my teeth...waiting for something else horrible to occur. I began to wonder if Ken’s family member had been right when she said I didn’t have enough faith. I really struggled with it and prayed over and over that God would give me some peace. And no matter how many times I prayed that prayer, He always told me the same thing... “You need to get ready”.
“Ready for WHAT?” I would cry. “You need to get ready”, was all He ever said.
Ken was doing so well, in fact, that I briefly considered going back to work. I had quit my job at the Pre-K the day he was diagnosed. My "job" had become looking after Ken and doing everything I could to keep him as healthy as I could for as long as I could. When he started going “back to work”, and we didn’t have weekly trips to Erlanger Hospital, it kind of left me twiddling my thumbs. I started looking at the want ads to see if I could find anything close by, but I had a niggling little feeling way down deep in my soul that told me “not yet”. So, I prayed about it and felt like God was telling me not to start anything new.
I had been a parent volunteer at Boynton Elementary almost as long as the boys had been going there and had been helping out whenever Ken wasn’t so bad off. I decided I would just continue doing that, only now on a more regular basis. So, I started working in the Media Center every afternoon from about noon until school dismissed. That way I could be there when Benjamin got out and then we could jump in the car and make it across town in just enough time to pick up Jesse at the middle school.
That’s how things went for the next several months. I SOOO wanted to believe that it would continue this way and that Ken would be well again. And I tried believing it–truly I did. But I always felt like I was walking around on my tiptoes, holding my breath, gritting my teeth...waiting for something else horrible to occur. I began to wonder if Ken’s family member had been right when she said I didn’t have enough faith. I really struggled with it and prayed over and over that God would give me some peace. And no matter how many times I prayed that prayer, He always told me the same thing... “You need to get ready”.
“Ready for WHAT?” I would cry. “You need to get ready”, was all He ever said.
"You don't have enough faith!"
Ken’s one-month appointment showed no changes, so Dr. Schlabach told us Ken didn’t have to come back for three months. He wouldn’t say the R-Word (remission), but he did say “things look good” (whatever the heck THAT was supposed to mean). Dr. S. went on to say that Ken could do whatever he felt like doing, but not to overdo.
Three months came and went and Ken went back to see Dr. Schlabach. None of the tests/scans/scopes they did showed any sign of cancer. Dr. S. shook his head and said, “Ken, there is no medical reason that you should still be here.” I replied, “That’s because the reason he’s still here is NOT medical. It is a God thing.” The Dr. agreed and told us to come back three months later.
We entered into a time of being almost “normal”. Ken felt much stronger and was able to get out and piddle around a little with his rental properties. We were able to get a portable feeding pump (“Baby Bill”) which Ken could wear in a backpack, so we were able to go more places. He started taking the boys to “camp out” in his van so they could sell stuff at the Flea Market down in Dalton. Jesse and Benjamin loved that. They still talk about sleeping in the van, talking to their Dad through the night. I’m glad they have those memories.
I guess it was around this time that I heard that one of Ken’s family members was telling everybody that “Kenny has been healed!” While I was praising God and rejoicing loudly at the fact that Ken was doing so well, for some reason, that comment from his family member bothered me. You have to understand – this particular family member, and others of his family as well, never seemed to “get it” when it came to Ken’s illness. They were pretty much in denial about the whole thing. It seemed like they thought that as long as Ken wasn’t laying in the bed dying, that he was just FINE. They would ask him to do things like climb up on their roof or go and shovel chicken manure. This man was missing half of his internal organs and had absolutely no immune system, but somehow, his family thought those requests were reasonable. I would stomp my foot at Ken and tell him to call his family member back and tell them that what they had requested was out of the question. I can still see Ken grinning at me, saying, “I guess you’re, right, Honey. I didn’t think about that.” Then he would call and tell them that “Melinda says I can’t help you ...”. Sometimes I think he would agree to help them with those ridiculous requests just to see me stomp my foot at him. Silly man, I was only trying to take care of him.
Anyway, for some reason, the “healed” remark just seemed to fly all over me. I would grit my teeth and not say anything, because I didn’t want to cause any trouble between Ken and his family. They loved him too, and in their own peculiar way, I knew they wanted what was best for him. But one day, the family member was just all in my face about it. She asked me if I had told Jesse and Benjamin that Ken had been healed. I said, “No, I haven’t told them that.” “What are you waiting for?”, she asked. (DEEP breath) “Because I don’t know for sure that he’s been healed,” I replied. Family member is becoming more animated now... “What do you mean, you don’t know he’s been healed?! Don’t you believe God can heal Kenny?!” she shouted. (Another DEEP breath) “YES!”, I replied, “I do believe that God can heal Ken. I believe that He can grow Ken a brand new stomach if that’s what He wants to do. I just am not sure what God is going to do.” Then this family member looked me square in the eyes and said something I’ll never forget. “You have to pray believing! YOU DON’T HAVE ENOUGH FAITH!” Well... I felt like someone had squeezed every little bit of air out of my lungs. I’m not sure what she expected me to say. I finally said, “Are you saying that if Ken dies, it will be my fault?” She started sputtering and assuring me that that was not what she meant, but her tone had been so condemning and accusatory. It broke my heart. I guess she realized that she had said too much, because she left soon after.
SIGH... As much as I would loved to have agreed with her that Ken was healed, God NEVER told me He was going to heal him. God told me that I should “get ready”. And that’s what I tried to do.
Three months came and went and Ken went back to see Dr. Schlabach. None of the tests/scans/scopes they did showed any sign of cancer. Dr. S. shook his head and said, “Ken, there is no medical reason that you should still be here.” I replied, “That’s because the reason he’s still here is NOT medical. It is a God thing.” The Dr. agreed and told us to come back three months later.
We entered into a time of being almost “normal”. Ken felt much stronger and was able to get out and piddle around a little with his rental properties. We were able to get a portable feeding pump (“Baby Bill”) which Ken could wear in a backpack, so we were able to go more places. He started taking the boys to “camp out” in his van so they could sell stuff at the Flea Market down in Dalton. Jesse and Benjamin loved that. They still talk about sleeping in the van, talking to their Dad through the night. I’m glad they have those memories.
I guess it was around this time that I heard that one of Ken’s family members was telling everybody that “Kenny has been healed!” While I was praising God and rejoicing loudly at the fact that Ken was doing so well, for some reason, that comment from his family member bothered me. You have to understand – this particular family member, and others of his family as well, never seemed to “get it” when it came to Ken’s illness. They were pretty much in denial about the whole thing. It seemed like they thought that as long as Ken wasn’t laying in the bed dying, that he was just FINE. They would ask him to do things like climb up on their roof or go and shovel chicken manure. This man was missing half of his internal organs and had absolutely no immune system, but somehow, his family thought those requests were reasonable. I would stomp my foot at Ken and tell him to call his family member back and tell them that what they had requested was out of the question. I can still see Ken grinning at me, saying, “I guess you’re, right, Honey. I didn’t think about that.” Then he would call and tell them that “Melinda says I can’t help you ...”. Sometimes I think he would agree to help them with those ridiculous requests just to see me stomp my foot at him. Silly man, I was only trying to take care of him.
Anyway, for some reason, the “healed” remark just seemed to fly all over me. I would grit my teeth and not say anything, because I didn’t want to cause any trouble between Ken and his family. They loved him too, and in their own peculiar way, I knew they wanted what was best for him. But one day, the family member was just all in my face about it. She asked me if I had told Jesse and Benjamin that Ken had been healed. I said, “No, I haven’t told them that.” “What are you waiting for?”, she asked. (DEEP breath) “Because I don’t know for sure that he’s been healed,” I replied. Family member is becoming more animated now... “What do you mean, you don’t know he’s been healed?! Don’t you believe God can heal Kenny?!” she shouted. (Another DEEP breath) “YES!”, I replied, “I do believe that God can heal Ken. I believe that He can grow Ken a brand new stomach if that’s what He wants to do. I just am not sure what God is going to do.” Then this family member looked me square in the eyes and said something I’ll never forget. “You have to pray believing! YOU DON’T HAVE ENOUGH FAITH!” Well... I felt like someone had squeezed every little bit of air out of my lungs. I’m not sure what she expected me to say. I finally said, “Are you saying that if Ken dies, it will be my fault?” She started sputtering and assuring me that that was not what she meant, but her tone had been so condemning and accusatory. It broke my heart. I guess she realized that she had said too much, because she left soon after.
SIGH... As much as I would loved to have agreed with her that Ken was healed, God NEVER told me He was going to heal him. God told me that I should “get ready”. And that’s what I tried to do.
"Wait and See"
After about three more weeks of constant tube feeding, numerous medications, and sleepless nights, I began to see tiny little glimpses of improvement. Ken’s fever was going down and the diarrhea seemed to be subsiding some. He was even saying he was hungry again, so that was encouraging.
Dr. Gefter was concerned with Ken’s weight loss, so he prescribed another kind of liquid nutrition. It was called ProSure and it was made specially for cancer patients. Now Ken was getting three cans of the Replete and two to three cans of the ProSure every day. “Bill” was pumping constantly, day and night.
Anytime Ken finished with any kind of treatment, the doctors would always do another round of scans and scopes to see how the cancer had reacted. The results this time were unchanged from what they had been prior to the radiation. The doctors said that was good news because the cancer had neither grown nor spread. Told us that now we would just have to “wait and see”. They scheduled Ken for an appointment in a month.
Ken was getting stronger each day. He was able to eat a little, here and there, so we were gradually able to go back to tube-feeding only at night. The “hollow-eyed” look was being replaced by that mischievous sparkle I had fallen in love with. I was so grateful that Ken was finally feeling better, but it was difficult for me to know how I was supposed to feel at that time. I wanted to be happy and relieved, but I felt like I was constantly holding my breath, waiting for the next horrible thing to happen.
I pretended to let Ken go back to “normal”, but I was constantly watching for any little sign that could mean disaster. I would hold these conversations with myself in my head. Happy, relieved Melinda would say, “Relax! The doctors said everything looks good!” Worried, scared Melinda would reply, “But you KNOW that the cancer is in Ken’s lymph system–it could go anywhere!” Happy relieved Melinda would come back with, “Don’t waste precious time worrying! Just accept this miracle and live each day as if Ken was never going to be sick again!” Worried, scared Melinda would whine, “I can’t let myself feel relieved. It would hurt too much if he got sick again!” On and on it would go...driving me crazy and wearing me out. See, that’s how CRAZY cancer is. Even if it’s good news, it can drive you nuts!
Dr. Gefter was concerned with Ken’s weight loss, so he prescribed another kind of liquid nutrition. It was called ProSure and it was made specially for cancer patients. Now Ken was getting three cans of the Replete and two to three cans of the ProSure every day. “Bill” was pumping constantly, day and night.
Anytime Ken finished with any kind of treatment, the doctors would always do another round of scans and scopes to see how the cancer had reacted. The results this time were unchanged from what they had been prior to the radiation. The doctors said that was good news because the cancer had neither grown nor spread. Told us that now we would just have to “wait and see”. They scheduled Ken for an appointment in a month.
Ken was getting stronger each day. He was able to eat a little, here and there, so we were gradually able to go back to tube-feeding only at night. The “hollow-eyed” look was being replaced by that mischievous sparkle I had fallen in love with. I was so grateful that Ken was finally feeling better, but it was difficult for me to know how I was supposed to feel at that time. I wanted to be happy and relieved, but I felt like I was constantly holding my breath, waiting for the next horrible thing to happen.
I pretended to let Ken go back to “normal”, but I was constantly watching for any little sign that could mean disaster. I would hold these conversations with myself in my head. Happy, relieved Melinda would say, “Relax! The doctors said everything looks good!” Worried, scared Melinda would reply, “But you KNOW that the cancer is in Ken’s lymph system–it could go anywhere!” Happy relieved Melinda would come back with, “Don’t waste precious time worrying! Just accept this miracle and live each day as if Ken was never going to be sick again!” Worried, scared Melinda would whine, “I can’t let myself feel relieved. It would hurt too much if he got sick again!” On and on it would go...driving me crazy and wearing me out. See, that’s how CRAZY cancer is. Even if it’s good news, it can drive you nuts!
Radiation
Ken’s radiation treatments began without any fuss. We went every weekday morning and were only there for about two hours at the most. Then we’d go home and life went on as “normally” as it could in the world of the dreaded “C-Word”. I remember one funny thing about going for the radiation treatments. You know how people complain about the magazines at the doctors’ offices always being old? Well, one morning we went in and on the table there was a magazine that was dated June, 1977!!!! I’m NOT kidding! The radiation center wasn’t even that old. I’ve often wondered just where the magazine came from. Anyway, it was good for a laugh.
The radiation treatments made Ken very, very tired. In fact, it sort of had a cumulative effect. The more treatments he had, the more tired he was. To begin with, that was the only side-effect he suffered. But, as the weeks passed, Ken began to get sick. First, it was just severe nausea. Then it went into mild diarrhea. He couldn’t eat, so we were having to keep “Bill” pumping more than usual to keep him from losing weight. Then, about when the treatments were ending, the diarrhea got worse. And about two weeks after the treatments were finished, the diarrhea got MUCH worse. In fact, the only word that really describes it would be “explosive”. Poor Ken, he was SO sick. By the end of June, he was taking four different medications to try and stop it and he was hooked up to “Bill” constantly. I was REALLY worried. I was afraid we were going to lose him then. I was SO scared and I was NOT ready for him to go (not that I was EVER ready). I remember laying on the floor by the couch (he was more comfortable there than in the hospital bed) while he slept, listening to him breathe, listening to “Bill” clicking and grinding through the night, burying my face in my pillow, trying not to sob out loud. It was such a heart-breaking time.
Michaelann and Adam were getting married on July 6th. Jesse and Benjamin were both in the wedding. But Ken was so sick, I wasn’t able to go down and be a part of the preparations like I would have liked to. In fact, I wasn’t really sure until the morning of the wedding whether or not I would even get to go. Mama and Daddy came up and got the boys so they’d be there for the rehearsal, but Ken was too sick to go and I wouldn’t leave him even for one night. The morning of the 6th, Ken assured me it would be okay for me to go. I had asked his brother to come and stay with him while I was gone. Before I left, I gave his brother a list of what to do if Ken got worse. Then I put my finger in his face and told him that he was NOT to leave Ken alone, no matter what Ken said. Ken had a habit of making his situation sound better than it really was, and his family tended to be in denial about the whole thing. I was worried that Ken would tell his brother that he was fine and send him on home. I told Ken’s brother if he left before I got back, I would “kick his butt”. He laughed at me, but I was absolutely serious.
Jan and her sister, Jayne, were driving down that morning, so I decided to go with them. I was so exhausted that I was really afraid to drive by myself, especially since the boys would be coming back with me. I was so worried about leaving Ken at home so sick, that I don’t really remember a whole lot about Michaelann’s wedding. I do remember how beautiful she looked coming down the aisle, on her way to marry her sweet Adam. It did my heart good to see how much they loved each other. After the reception, Michaelann asked me to help her get ready to leave the church. Sweet girl...she wanted to make sure I felt like I had been included in the wedding, even though I was only there for a short while. When I look at her wedding pictures now, I’m always surprised at how much of it I don’t remember. It makes me sad, but it couldn’t be helped.
The radiation treatments made Ken very, very tired. In fact, it sort of had a cumulative effect. The more treatments he had, the more tired he was. To begin with, that was the only side-effect he suffered. But, as the weeks passed, Ken began to get sick. First, it was just severe nausea. Then it went into mild diarrhea. He couldn’t eat, so we were having to keep “Bill” pumping more than usual to keep him from losing weight. Then, about when the treatments were ending, the diarrhea got worse. And about two weeks after the treatments were finished, the diarrhea got MUCH worse. In fact, the only word that really describes it would be “explosive”. Poor Ken, he was SO sick. By the end of June, he was taking four different medications to try and stop it and he was hooked up to “Bill” constantly. I was REALLY worried. I was afraid we were going to lose him then. I was SO scared and I was NOT ready for him to go (not that I was EVER ready). I remember laying on the floor by the couch (he was more comfortable there than in the hospital bed) while he slept, listening to him breathe, listening to “Bill” clicking and grinding through the night, burying my face in my pillow, trying not to sob out loud. It was such a heart-breaking time.
Michaelann and Adam were getting married on July 6th. Jesse and Benjamin were both in the wedding. But Ken was so sick, I wasn’t able to go down and be a part of the preparations like I would have liked to. In fact, I wasn’t really sure until the morning of the wedding whether or not I would even get to go. Mama and Daddy came up and got the boys so they’d be there for the rehearsal, but Ken was too sick to go and I wouldn’t leave him even for one night. The morning of the 6th, Ken assured me it would be okay for me to go. I had asked his brother to come and stay with him while I was gone. Before I left, I gave his brother a list of what to do if Ken got worse. Then I put my finger in his face and told him that he was NOT to leave Ken alone, no matter what Ken said. Ken had a habit of making his situation sound better than it really was, and his family tended to be in denial about the whole thing. I was worried that Ken would tell his brother that he was fine and send him on home. I told Ken’s brother if he left before I got back, I would “kick his butt”. He laughed at me, but I was absolutely serious.
Jan and her sister, Jayne, were driving down that morning, so I decided to go with them. I was so exhausted that I was really afraid to drive by myself, especially since the boys would be coming back with me. I was so worried about leaving Ken at home so sick, that I don’t really remember a whole lot about Michaelann’s wedding. I do remember how beautiful she looked coming down the aisle, on her way to marry her sweet Adam. It did my heart good to see how much they loved each other. After the reception, Michaelann asked me to help her get ready to leave the church. Sweet girl...she wanted to make sure I felt like I had been included in the wedding, even though I was only there for a short while. When I look at her wedding pictures now, I’m always surprised at how much of it I don’t remember. It makes me sad, but it couldn’t be helped.
Getting Ready for Another New Thing
Ken would need 30 radiation treatments – one a day, five days a week, for six weeks. The boys only had four weeks of school left, so I wondered what I would do with them for those final two weeks of Ken’s treatment. Yes, they were 12 and 8, and under normal circumstances, they would have been fine at the house by themselves. But nothing about what we were going through was “normal”. Jesse worried himself into either a headache or an upset stomach about every third day. Benjamin didn’t want to be away from me physically for long. Even at home, if I left the room where Benjamin was, he would come looking for me – just to make sure I was still there. That continued throughout Ken’s illness and worsened for quite a while after Ken died. I didn’t dare leave him for long with anyone except Mama and Daddy or Jan and Brian, or he would go into panic mode. Poor baby.
I had heard something at church about a summer day camp at Camp Scott Patterson, right down the road from our church. Keith was on the Board of Directors for the Catoosa County Baptist Association, so I figured he could give me some info on the day camp. I called and explained that I only needed a place for the boys to go for the first two weeks of summer. Keith said he would talk to the camp director and find out if they could come just for the two weeks (usually you had to sign up for the entire summer), and he would find out how much it would cost. When he called me back that evening, Keith said, “Your boys are signed up for the first two weeks, and it’s already been paid for. All you need to do is go by and fill out the papers.” There he went, again, being such a blessing. All I had asked for was information. What I got was a solution to my problem and an answer to a prayer I hadn’t prayed yet. He never told me who the “angel” was that paid for the boys to go to “Camp Scott P” that summer. God Bless them, whoever it was.
So, we set about preparing for a new leg to this journey of exhaustion. We scheduled the treatments for the mornings so we could get back home before the boys got home from school. The treatments themselves would only last about 20 minutes each, so at least we didn’t have to be at the hospital all day like we were with the chemo treatments. Ken had done so well with all of his other treatments and procedures, I assumed radiation would be no different. But... you know what they say about assuming. Boy, was I WRONG!
I had heard something at church about a summer day camp at Camp Scott Patterson, right down the road from our church. Keith was on the Board of Directors for the Catoosa County Baptist Association, so I figured he could give me some info on the day camp. I called and explained that I only needed a place for the boys to go for the first two weeks of summer. Keith said he would talk to the camp director and find out if they could come just for the two weeks (usually you had to sign up for the entire summer), and he would find out how much it would cost. When he called me back that evening, Keith said, “Your boys are signed up for the first two weeks, and it’s already been paid for. All you need to do is go by and fill out the papers.” There he went, again, being such a blessing. All I had asked for was information. What I got was a solution to my problem and an answer to a prayer I hadn’t prayed yet. He never told me who the “angel” was that paid for the boys to go to “Camp Scott P” that summer. God Bless them, whoever it was.
So, we set about preparing for a new leg to this journey of exhaustion. We scheduled the treatments for the mornings so we could get back home before the boys got home from school. The treatments themselves would only last about 20 minutes each, so at least we didn’t have to be at the hospital all day like we were with the chemo treatments. Ken had done so well with all of his other treatments and procedures, I assumed radiation would be no different. But... you know what they say about assuming. Boy, was I WRONG!
Oncologist Number Three
Around the time we finally got Jesse all squared away, Ken finished his second round of chemotherapy. He was doing amazingly well, considering all he had been through. Dr. Schlabach said that he felt Ken might benefit from some radiation treatments now that they had narrowed down the area in his abdomen that would be affected. He made us an appointment with ANOTHER oncologist–this time, a radiation oncologist. Before Ken was diagnosed, I had no idea there were so many different kinds of oncologists. It felt like we were going to meet them all before it was over with.
The radiation oncologist’s name was Jeffrey Gefter. A couple at our church who had been through cancer treatment earlier, told us that Dr. Gefter was a wonderful man and a great doctor. They also told us to expect to wait a long time to see him. He was the head of that department, but he liked to meet with every patient treated in the radiology center. Turns out, they were absolutely correct–about the wait–that is. I think our appointment was right after lunch, probably 1:00. They took some x-rays, did some measurements, marked Ken’s abdomen (they call it “tattooing”) to determine where to aim the radiation, took Ken’s vitals and sent us back to the waiting room. We waited, waited, waited, waited, and WAITED!!!!! We waited so long that I had to call and make arrangements for someone else to be at the house when the boys got off the school bus. I think it was finally after 6:00 p.m. before Dr. Gefter came in. I know that the office staff had already left for the day. But, I have to admit, that Dr. G. was worth the wait. He showed us all of Ken’s x-rays, explained which areas they would radiate, and explained all of the side effects we could expect. He was very warm and compassionate and even though it was late, he encouraged us to voice our concerns and ask all of the questions we needed to ask. It was probably around 8:00 before we were ready to leave. Dr. Gefter said his staff would call and let us know when the treatments would begin.
Once again, Ken and I left Erlanger Hospital feeling like we were treading uncharted waters. Chemotherapy, surgery, chemo again, and now radiation. These were all things that we had been told at the outset would probably be of no value, given Ken’s initial diagnosis and prognosis. And every time we asked if the prognosis had changed, we would get vague answers and shoulder shrugs. “Only God knows”, was a phrase we heard a lot. I know it was the truth, but I wanted to jump up and down and scream, “Why can’t God give us a clue?!”
The radiation oncologist’s name was Jeffrey Gefter. A couple at our church who had been through cancer treatment earlier, told us that Dr. Gefter was a wonderful man and a great doctor. They also told us to expect to wait a long time to see him. He was the head of that department, but he liked to meet with every patient treated in the radiology center. Turns out, they were absolutely correct–about the wait–that is. I think our appointment was right after lunch, probably 1:00. They took some x-rays, did some measurements, marked Ken’s abdomen (they call it “tattooing”) to determine where to aim the radiation, took Ken’s vitals and sent us back to the waiting room. We waited, waited, waited, waited, and WAITED!!!!! We waited so long that I had to call and make arrangements for someone else to be at the house when the boys got off the school bus. I think it was finally after 6:00 p.m. before Dr. Gefter came in. I know that the office staff had already left for the day. But, I have to admit, that Dr. G. was worth the wait. He showed us all of Ken’s x-rays, explained which areas they would radiate, and explained all of the side effects we could expect. He was very warm and compassionate and even though it was late, he encouraged us to voice our concerns and ask all of the questions we needed to ask. It was probably around 8:00 before we were ready to leave. Dr. Gefter said his staff would call and let us know when the treatments would begin.
Once again, Ken and I left Erlanger Hospital feeling like we were treading uncharted waters. Chemotherapy, surgery, chemo again, and now radiation. These were all things that we had been told at the outset would probably be of no value, given Ken’s initial diagnosis and prognosis. And every time we asked if the prognosis had changed, we would get vague answers and shoulder shrugs. “Only God knows”, was a phrase we heard a lot. I know it was the truth, but I wanted to jump up and down and scream, “Why can’t God give us a clue?!”
Diagnosis... and relief.
When I got up the next morning, I decided to go ahead and try to get Jesse an appointment with another doctor before I headed home to Ringgold. There weren’t very many developmental psychologists in the area, so the pickings were going to be slim. I wanted to go with a medical doctor, but most of the psychiatrists in the area either didn’t see children or required a referral or had a waiting list a mile long. I finally was able to get an appointment with a counselor in Ringgold for the next week. She said they could do some testing to help determine what was going on with Jesse. I had, truthfully, been considering counseling for the boys anyway. Ken’s illness had been so hard on them both. I figured maybe they would be more willing to talk about it to someone other than me and Ken.
In a final desperate move, I called TEAM Evaluation Center in Chattanooga just to find out how long their waiting list was. The lady I spoke with said, “We just had a cancellation. Can you bring him Tuesday?” I was convinced that my ears must be playing a trick on my brain. “Which Tuesday?” I asked. “This coming Tuesday”, she said. Sigh... Isn’t that just like God? You struggle and struggle with a thing and when you FINALLY give up and turn it over to Him, He smiles and pats you on your stubborn little head. “YES!” I said, “We will definitely be there this coming Tuesday!” I shouted, “Hallelujah” and “Praise God” a few hundred times and hurried home to tell Ken.
The next week Jesse started his appointments with the counselor and at TEAM Evaluation. I poured out my soul at both places and was very clear with them that we were trying to determine which of the two diagnoses was appropriate. Over the course of the next two weeks, he had appointments every day at one place or the other. When all of the testing was finally said and done, everyone who had seen Jesse OVERWHELMINGLY confirmed the Asperger’s Syndrome diagnosis and ABSOLUTELY dismissed the Bipolar Disorder diagnosis. (Thanks, again, God.) The moral of this story is that, as a parent, you know your child BEST. If someone tries to give you a diagnosis you don’t agree with, GET A SECOND OPINION!!!
Ken and I were so relieved. We had our medical diagnosis of AS, so Catoosa County would have to offer special education services to Jesse. He was finally going to get the help (and hopefully, the understanding) he had been needing ALL ALONG. In the following months, even up until he died, Ken thanked me several times for not just going along with that first doctor and for making sure that Jesse was diagnosed correctly and treated appropriately. Interestingly enough, while I was taking Jesse to TEAM Evaluation, I met several parents who had taken their children to that same doctor. I learned that his nickname was “medicine man” and that BPD and Abilify were pretty much his standard diagnosis and treatment with any kid that walked in the door. You see, if he puts a kid on Abilify, that kid would have to be followed closely by a doctor. More office visits, more money. It was that simple.
So, to any parents who might be reading this, God gives us instincts for a reason. Trust God and trust your instincts!
In a final desperate move, I called TEAM Evaluation Center in Chattanooga just to find out how long their waiting list was. The lady I spoke with said, “We just had a cancellation. Can you bring him Tuesday?” I was convinced that my ears must be playing a trick on my brain. “Which Tuesday?” I asked. “This coming Tuesday”, she said. Sigh... Isn’t that just like God? You struggle and struggle with a thing and when you FINALLY give up and turn it over to Him, He smiles and pats you on your stubborn little head. “YES!” I said, “We will definitely be there this coming Tuesday!” I shouted, “Hallelujah” and “Praise God” a few hundred times and hurried home to tell Ken.
The next week Jesse started his appointments with the counselor and at TEAM Evaluation. I poured out my soul at both places and was very clear with them that we were trying to determine which of the two diagnoses was appropriate. Over the course of the next two weeks, he had appointments every day at one place or the other. When all of the testing was finally said and done, everyone who had seen Jesse OVERWHELMINGLY confirmed the Asperger’s Syndrome diagnosis and ABSOLUTELY dismissed the Bipolar Disorder diagnosis. (Thanks, again, God.) The moral of this story is that, as a parent, you know your child BEST. If someone tries to give you a diagnosis you don’t agree with, GET A SECOND OPINION!!!
Ken and I were so relieved. We had our medical diagnosis of AS, so Catoosa County would have to offer special education services to Jesse. He was finally going to get the help (and hopefully, the understanding) he had been needing ALL ALONG. In the following months, even up until he died, Ken thanked me several times for not just going along with that first doctor and for making sure that Jesse was diagnosed correctly and treated appropriately. Interestingly enough, while I was taking Jesse to TEAM Evaluation, I met several parents who had taken their children to that same doctor. I learned that his nickname was “medicine man” and that BPD and Abilify were pretty much his standard diagnosis and treatment with any kid that walked in the door. You see, if he puts a kid on Abilify, that kid would have to be followed closely by a doctor. More office visits, more money. It was that simple.
So, to any parents who might be reading this, God gives us instincts for a reason. Trust God and trust your instincts!
Screaming at God
I decided that I needed to be by myself for a little while so I could read all the BPD/Abilify research and try to sort some things out. I talked to Ken about it and he agreed. He usually always deferred to my judgment when it came to the issues of the boys’ educational and health needs. And at this point in our lives, Ken was so pre-occupied and worried about his own health and our future, that he just couldn’t handle one more thing. Luckily, he was doing well enough physically and had finally mastered the art of hooking himself up to “Bill” (feeding pump), that he was okay with me leaving for a little while. I decided to go down to Dalton, GA, about 1/2 an hour away. I gathered up all of the research, kissed all of my guys and took off down the road. I got a hotel room for one night, treated myself to dinner at the Cracker Barrel, and settled in to start reading.
I had just started wading through the pile of articles when my cell phone rang. It was Mama. She had called the house to check on us. When she asked for me, Jesse said, “She left. She’s at a hotel.” (That, by the way, is a typical type of response from a person with Asperger’s Syndrome.) Instead of telling Jesse to give the phone to Ken, Mama called my cell phone, all in a panic, wanting to know “what was going on”. After several minutes of assuring Mama that everything was okay and I only needed some quiet to deal with the situation at hand, she finally calmed down. Truthfully, though, I’m not sure she was completely reassured. Later on, I wondered why she would even entertain the thought that I could possibly “leave”. I had to take care of Ken. And I would NEVER, EVER, EVER leave my boys. But, at that point, I guess she may have been worried for my sanity. Some days, so was I.
Every article I picked up just seemed to stab at my heart. And, yes, Jesse did display a few characteristics of a person dealing with Bipolar Disorder. But the very same characteristics he displayed could also be attributed to someone dealing with Asperger’s Syndrome. The information on Abilify was frightening. It was classified as an “anitpsychotic” drug, falling into the general category of “psychotropic” drugs. Psychotropic drugs ALTER THE CHEMISTRY OF THE BRAIN!!!!! Preliminary studies had shown fairly good results in adults with BPD. But there was ABSOLUTELY NO RESEARCH on how this drug affected children! In fact, there was very little research about children with BPD! The possible side effects of Abilify were enough to send me screaming for the exit, and those were just the mild ones. I knew that no matter what else we decided about Jesse, there was NO POSSIBLE WAY that we could agree to give this brain-altering drug to our 12-year-old son.
As the evening progressed, my research time began to turn into “wailing” time. Before long, I was pounding the furniture and screaming at God. I just couldn’t understand why this wonderful boy of ours, who had already been through more hell than any adult should have to endure, was now having to deal with another potentially horrible situation, not of his own making or choosing. Why in the world, couldn’t God just give Jesse a break for once?
Finally, exhaustion settled in and I fell asleep. Don’t know how long I slept, but when I woke up in the wee hours, I knew what we had to do. We had to get another opinion. In my heart of hearts, I just knew that Jesse was NOT bipolar. I also knew that he DID have Asperger’s Syndrome. That decision made, I drifted back to sleep.
I had just started wading through the pile of articles when my cell phone rang. It was Mama. She had called the house to check on us. When she asked for me, Jesse said, “She left. She’s at a hotel.” (That, by the way, is a typical type of response from a person with Asperger’s Syndrome.) Instead of telling Jesse to give the phone to Ken, Mama called my cell phone, all in a panic, wanting to know “what was going on”. After several minutes of assuring Mama that everything was okay and I only needed some quiet to deal with the situation at hand, she finally calmed down. Truthfully, though, I’m not sure she was completely reassured. Later on, I wondered why she would even entertain the thought that I could possibly “leave”. I had to take care of Ken. And I would NEVER, EVER, EVER leave my boys. But, at that point, I guess she may have been worried for my sanity. Some days, so was I.
Every article I picked up just seemed to stab at my heart. And, yes, Jesse did display a few characteristics of a person dealing with Bipolar Disorder. But the very same characteristics he displayed could also be attributed to someone dealing with Asperger’s Syndrome. The information on Abilify was frightening. It was classified as an “anitpsychotic” drug, falling into the general category of “psychotropic” drugs. Psychotropic drugs ALTER THE CHEMISTRY OF THE BRAIN!!!!! Preliminary studies had shown fairly good results in adults with BPD. But there was ABSOLUTELY NO RESEARCH on how this drug affected children! In fact, there was very little research about children with BPD! The possible side effects of Abilify were enough to send me screaming for the exit, and those were just the mild ones. I knew that no matter what else we decided about Jesse, there was NO POSSIBLE WAY that we could agree to give this brain-altering drug to our 12-year-old son.
As the evening progressed, my research time began to turn into “wailing” time. Before long, I was pounding the furniture and screaming at God. I just couldn’t understand why this wonderful boy of ours, who had already been through more hell than any adult should have to endure, was now having to deal with another potentially horrible situation, not of his own making or choosing. Why in the world, couldn’t God just give Jesse a break for once?
Finally, exhaustion settled in and I fell asleep. Don’t know how long I slept, but when I woke up in the wee hours, I knew what we had to do. We had to get another opinion. In my heart of hearts, I just knew that Jesse was NOT bipolar. I also knew that he DID have Asperger’s Syndrome. That decision made, I drifted back to sleep.
Unexpected Turn
I took Jesse to see the Developmental Psychologist, in hopes of getting a medical diagnosis of Asperger’s so the county school system would have to offer him services. When we went in, they handed me about three “parental observation scales” to fill out while they did vitals on Jesse. I filled them all out and we waited to see the Dr. They called us back and the Dr. began a thorough physical exam on Jesse. He also was asking Jesse questions about school and the difficulties he had been experiencing. Initially, I was very impressed with the Dr.’s thoroughness and professional manner.
After the physical exam was finished, the Dr. sent Jesse back to the waiting room so that we could talk. He asked me what I thought about the idea of an Asperger’s diagnosis. I told him that I believed it was dead-on. He sort of smirked and said, “Okay, if that’s what you think, we’ll let that diagnosis stand, but what’s really going on is that Jesse is BIPOLAR. Now, imagine if you can, how that felt. I had only just come to terms with the fact that my child was what the world considered disabled. Now this man, who had only ever spent about 30 minutes with Jesse, was telling me that he was severely mentally ill. I started feeling flushed and my senses seemed to narrow down, so I probably did not hear everything else that the Dr. said. I do remember hearing him say that he wanted to start Jesse “right away” on a drug called “Abilify”. Talked like it was the greatest medication on the planet.
I think by this point I was actually speechless because the Dr. said, “I can see that this wasn’t what you were expecting to hear. Do you need a couple of days to think it over?” (Well, DUH!) I nodded my head and hurriedly headed to the door. The Dr. said, “Once you’ve thought about it, you’ll see that I’m right. Give me a call and we’ll get Jesse started on that medication as quick as we can!” I paid the bill, grabbed Jesse and headed for home. Trying to make it home without totally breaking down in front of Jesse was extremely difficult, but somehow I managed it. It’s a good thing Ken wasn’t home when we got there, because it took the better part of an hour for me to calm down enough to discuss anything sensibly.
I told Ken what the Dr. had said. I explained, as best I could, what Bipolar Disorder was and what that would mean for Jesse’s future and our future too. Ken was as upset as I was. He ABSOLUTELY did not want to put Jesse on any medication (which didn’t surprise me, considering how he was with his own meds). I told him that I needed to do some research before we could make a truly informed decision. I got online and started scouring the internet for any information about BPD and Abilify. There was a lot of information – so much, in fact, that I was completely and totally overwhelmed. The more I tried to read, the more physically ill I became. I finally had to stop. I put all of the info into a file folder and put it away. What were we going to do now?
After the physical exam was finished, the Dr. sent Jesse back to the waiting room so that we could talk. He asked me what I thought about the idea of an Asperger’s diagnosis. I told him that I believed it was dead-on. He sort of smirked and said, “Okay, if that’s what you think, we’ll let that diagnosis stand, but what’s really going on is that Jesse is BIPOLAR. Now, imagine if you can, how that felt. I had only just come to terms with the fact that my child was what the world considered disabled. Now this man, who had only ever spent about 30 minutes with Jesse, was telling me that he was severely mentally ill. I started feeling flushed and my senses seemed to narrow down, so I probably did not hear everything else that the Dr. said. I do remember hearing him say that he wanted to start Jesse “right away” on a drug called “Abilify”. Talked like it was the greatest medication on the planet.
I think by this point I was actually speechless because the Dr. said, “I can see that this wasn’t what you were expecting to hear. Do you need a couple of days to think it over?” (Well, DUH!) I nodded my head and hurriedly headed to the door. The Dr. said, “Once you’ve thought about it, you’ll see that I’m right. Give me a call and we’ll get Jesse started on that medication as quick as we can!” I paid the bill, grabbed Jesse and headed for home. Trying to make it home without totally breaking down in front of Jesse was extremely difficult, but somehow I managed it. It’s a good thing Ken wasn’t home when we got there, because it took the better part of an hour for me to calm down enough to discuss anything sensibly.
I told Ken what the Dr. had said. I explained, as best I could, what Bipolar Disorder was and what that would mean for Jesse’s future and our future too. Ken was as upset as I was. He ABSOLUTELY did not want to put Jesse on any medication (which didn’t surprise me, considering how he was with his own meds). I told him that I needed to do some research before we could make a truly informed decision. I got online and started scouring the internet for any information about BPD and Abilify. There was a lot of information – so much, in fact, that I was completely and totally overwhelmed. The more I tried to read, the more physically ill I became. I finally had to stop. I put all of the info into a file folder and put it away. What were we going to do now?
Asperger's Syndrome
I went home and told Ken what the teacher had said. I then went online and began to do some research. The more I read, the more convinced I was that Jesse did, indeed, have Asperger's Syndrome. So many things suddenly made so much sense. For example, all of the sensory oddities Jesse displayed -- like how he always smelled his food before he would eat it, and how he would close his eyes whenever he was in a loud room, and how he refused to wear his pants up around his waist because he didn't like the way they felt around his tummy. And now I understood the whole "Mommy, there's a bump in my sock!" deal. When Jesse was about two, I spent the better part of three months yanking off his shoes and "fixing" seemingly imaginary bumps in his socks. Then, suddenly one day, for reasons known only to Jesse, he stopped complaining.
The research went on to say things are always black or white for kids with AS -- no gray areas. That so explained why Jesse would argue with you over and over about the same thing, even if you could prove to him irrevocably that he was wrong. AS kids perceive things differently and the way they perceive them is their "truth". I smiled through tears when I read that because it brought to mind a time when we were on vacation in North Carolina. We visited the Cherokee Reservation while we there. Michaelann and Kelly (Jan's daughter and Michaelann's best buddy) decided it would be fun to give all of us tribal nicknames. You know what they nicknamed Jesse? "Argues With Trees" (Benjamin, BTW, was "Squirming Dimple").
The school psychometrist came out and tested Jesse for a whole day and a half. Once finished, she called me in for a meeting. She said, "Yes, I believe Jesse probably has Asperger's, and yes, Jesse definitely has a learning disability, but it's not severe enough for us to offer him any special education services." She was basically telling me that because my child happened to be intelligent, the county wouldn't be serving him. Went home a little confused and disheartened. The next day, though, several of Jesse's teachers made a point to come into the library where I was volunteering and tell me that they DID NOT agree with the psychometrist's findings and they were going to "strongly request" that she test him again. In the meantime, Jesse's homeroom teacher would make modifications to Jesse's IEP to try and make things a little easier for him. I was truly appreciative of their efforts, but more than a little confused that NOW, all of a sudden, Jesse's former teachers were jumping in line to say there's something wrong and that the county needs to serve him. Why hadn't they said this back when Jesse had been in their classrooms?! O well, at least they were trying to help.
The special education teacher told me that if I could get a diagnosis of Asperger's Syndrome from a medical doctor, then the county would have to offer services to Jesse. I immediately thought of a place in Chattanooga called "Team Evaluation". As its name indicates, it was a whole diagnostic team -- psychiatrist, physical therapist, occupational therapist, medical doctor, counselor -- that evaluated every aspect of the child before making a diagnosis. I had dealings with them when I worked for Fortwood Center before Jesse was born and I knew what a thorough job they did. I also knew, though, that they usually had a waiting list of six months to a year before you could get an appointment. Since time was of the essence, I opted to call a new guy in town, a developmental psychologist, for an appointment. They could see us right away, so I was relieved. Turned out to be a BIG mistake!
The research went on to say things are always black or white for kids with AS -- no gray areas. That so explained why Jesse would argue with you over and over about the same thing, even if you could prove to him irrevocably that he was wrong. AS kids perceive things differently and the way they perceive them is their "truth". I smiled through tears when I read that because it brought to mind a time when we were on vacation in North Carolina. We visited the Cherokee Reservation while we there. Michaelann and Kelly (Jan's daughter and Michaelann's best buddy) decided it would be fun to give all of us tribal nicknames. You know what they nicknamed Jesse? "Argues With Trees" (Benjamin, BTW, was "Squirming Dimple").
The school psychometrist came out and tested Jesse for a whole day and a half. Once finished, she called me in for a meeting. She said, "Yes, I believe Jesse probably has Asperger's, and yes, Jesse definitely has a learning disability, but it's not severe enough for us to offer him any special education services." She was basically telling me that because my child happened to be intelligent, the county wouldn't be serving him. Went home a little confused and disheartened. The next day, though, several of Jesse's teachers made a point to come into the library where I was volunteering and tell me that they DID NOT agree with the psychometrist's findings and they were going to "strongly request" that she test him again. In the meantime, Jesse's homeroom teacher would make modifications to Jesse's IEP to try and make things a little easier for him. I was truly appreciative of their efforts, but more than a little confused that NOW, all of a sudden, Jesse's former teachers were jumping in line to say there's something wrong and that the county needs to serve him. Why hadn't they said this back when Jesse had been in their classrooms?! O well, at least they were trying to help.
The special education teacher told me that if I could get a diagnosis of Asperger's Syndrome from a medical doctor, then the county would have to offer services to Jesse. I immediately thought of a place in Chattanooga called "Team Evaluation". As its name indicates, it was a whole diagnostic team -- psychiatrist, physical therapist, occupational therapist, medical doctor, counselor -- that evaluated every aspect of the child before making a diagnosis. I had dealings with them when I worked for Fortwood Center before Jesse was born and I knew what a thorough job they did. I also knew, though, that they usually had a waiting list of six months to a year before you could get an appointment. Since time was of the essence, I opted to call a new guy in town, a developmental psychologist, for an appointment. They could see us right away, so I was relieved. Turned out to be a BIG mistake!
Side Trip
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!
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.
Making Preparations
Ken’s BIG surgery was scheduled for March 3, 2003 (03/03/03). They were going to completely remove his stomach and attach the upper part of his small intestine to the lower part of his esophagus. Keep in mind that he already had a feeding tube inserted into his jejunum (second portion of the small intestine), so this was going to be really MAJOR surgery. They would also be “exploring” the surrounding organs (don’t you just love medical terminology?) to see if the cancer had spread. To me, it sounded like they were going to split him open and take out about half of his insides (which is exactly what ended up happening, BTW).
Mama was coming up to take care of the boys for us (God bless you, Mama) again. I typed up a paper authorizing her to make school and medical decisions for them while Ken and I would be at the hospital. Sent notes to the principal and both boys’ teachers, letting them know what was going on and telling them if Jesse or Benjamin got upset or needed something, for them to call Mama. Then I set about trying to decide what I needed to pack for a two-week hospital stay.
One thing I had to do was go and buy Ken some pajamas. Please understand, my husband did NOT sleep in pajamas. . . only underwear. And, he ALWAYS kicked his covers off during the night. I remember after his first surgery, he was still wearing hospital gowns and every time I turned around, there he’d be, sound asleep, “strutting his stuff” with no sheet in sight. A couple of times, visitors almost caught him “nekkid”. He didn’t care, but I told him this time, he would have to wear at least pajama pants. He wasn’t too happy about it, but felt better about it when I got him some flannel sleeping pants and tee shirts instead of “old man pajamas”.
Mama was coming up to take care of the boys for us (God bless you, Mama) again. I typed up a paper authorizing her to make school and medical decisions for them while Ken and I would be at the hospital. Sent notes to the principal and both boys’ teachers, letting them know what was going on and telling them if Jesse or Benjamin got upset or needed something, for them to call Mama. Then I set about trying to decide what I needed to pack for a two-week hospital stay.
One thing I had to do was go and buy Ken some pajamas. Please understand, my husband did NOT sleep in pajamas. . . only underwear. And, he ALWAYS kicked his covers off during the night. I remember after his first surgery, he was still wearing hospital gowns and every time I turned around, there he’d be, sound asleep, “strutting his stuff” with no sheet in sight. A couple of times, visitors almost caught him “nekkid”. He didn’t care, but I told him this time, he would have to wear at least pajama pants. He wasn’t too happy about it, but felt better about it when I got him some flannel sleeping pants and tee shirts instead of “old man pajamas”.
Next
Well, we made it though Christmas, which was a miracle, in and of itself. Ken was able to eat a little, here and there, and we were sustaining his weight with the tube feedings. The first round of chemo ended sometime in February. Then they had to re-run all of the original tests to see how that mean old nasty disease had responded.
The test results were, in light of Ken’s initial diagnosis, positive. While the chemo had not shrunk the cancer any (they never expected that it would), the cancer had not grown any and didn’t appear to have spread to any other organs. Dr. Schlabach referred us back to Dr. Valle to talk about the possibility of surgery. “Possible stomach resection”, he said. (Didn’t know at that moment that “resection” is another word for “take the whole thing out”!) So, back to Dr. Valle’s office we went.
Dr. Valle said, “Since Ken did so well through the chemo, Dr. Schlabach and I believe that we should consider surgery now. He continued, “Once we remove his stomach we might be able to do radiation”. “WHAT?!!!”, I blurted, “You’re going to REMOVE his stomach–his WHOLE stomach?!” I had no idea that a person could live without a stomach! But I guess it made sense. Ken’s stomach didn’t work anymore and his nutrition was going directly into his intestines now, so I guess he didn’t need that diseased old stomach any more. Several years later, after Ken had died and we had moved to Alabama, Jesse got into an argument at school about this. His teacher was teaching about “vital organs”, you know, the ones you can’t live without– heart, lungs, liver, stomach, etc. Jesse made the comment that his dad had lived for two years without a stomach. Several of his classmates accused him of making it up. He had to educate them. Anyway, yes, you CAN live without a stomach. Who knew?
Dr. Valle wanted to schedule the surgery for early March. It would be an 8 to 12 hour surgery, so he would have to have Debbie find a day when she could rearrange his schedule. He would also have to schedule a Thoracic Surgeon (does surgery in the chest area) to be on call that day in case he had to go up into the chest cavity to get Ken’s stomach loose. We should expect at least two weeks in the hospital following the surgery. Debbie would call soon and let us know when the surgery would be. We went home again with huge question marks looming.
The test results were, in light of Ken’s initial diagnosis, positive. While the chemo had not shrunk the cancer any (they never expected that it would), the cancer had not grown any and didn’t appear to have spread to any other organs. Dr. Schlabach referred us back to Dr. Valle to talk about the possibility of surgery. “Possible stomach resection”, he said. (Didn’t know at that moment that “resection” is another word for “take the whole thing out”!) So, back to Dr. Valle’s office we went.
Dr. Valle said, “Since Ken did so well through the chemo, Dr. Schlabach and I believe that we should consider surgery now. He continued, “Once we remove his stomach we might be able to do radiation”. “WHAT?!!!”, I blurted, “You’re going to REMOVE his stomach–his WHOLE stomach?!” I had no idea that a person could live without a stomach! But I guess it made sense. Ken’s stomach didn’t work anymore and his nutrition was going directly into his intestines now, so I guess he didn’t need that diseased old stomach any more. Several years later, after Ken had died and we had moved to Alabama, Jesse got into an argument at school about this. His teacher was teaching about “vital organs”, you know, the ones you can’t live without– heart, lungs, liver, stomach, etc. Jesse made the comment that his dad had lived for two years without a stomach. Several of his classmates accused him of making it up. He had to educate them. Anyway, yes, you CAN live without a stomach. Who knew?
Dr. Valle wanted to schedule the surgery for early March. It would be an 8 to 12 hour surgery, so he would have to have Debbie find a day when she could rearrange his schedule. He would also have to schedule a Thoracic Surgeon (does surgery in the chest area) to be on call that day in case he had to go up into the chest cavity to get Ken’s stomach loose. We should expect at least two weeks in the hospital following the surgery. Debbie would call soon and let us know when the surgery would be. We went home again with huge question marks looming.
Christmas Blessing
As I mentioned earlier, it would be impossible to list all the kindnesses that were shown to our family during Ken's illness. But one is so precious that it bears mentioning specifically. It happened at Christmas, 2002, two months following Ken's diagnosis. He had had one surgery already, was being tube-fed and was in the midst of the meanest, most horrible chemotherapy imaginable.
Anyway, back to my story. One day, shortly before Christmas, Brad, our associate pastor, called and asked if he could come and bring us something. He showed up a little while later with a small Christmas tree. He said it was from the "little old ladies" Sunday School class at church. The branches were decorated with money. I still get misty-eyed remembering it. We put the tree up in our living room. It stayed there until late January or early February. Each time I thought I would "undecorate" it, I would change my mind because it was so precious a reminder of those sweet ladies.
Finally I decided that I needed to go ahead and take the money off and put the tree away. As I began the task, I was blessed all over again. Each piece of money had been folded into elaborate fans and shapes and tied with little gold and silver ribbons. I was completely overwhelmed at the sense of love and selflessness represented by that little tree. These sweet little ladies, many of them widows on limited incomes, collected money for us. Then, instead of putting it in an envelope or card, they used their arthritic little fingers to fashion lovely little "ornaments" and tie them to our precious Christmas tree. Tears flowed as I untied each ribbon and unfolded each piece of money. I believe there was $92 on that tree. I tucked it back to do something special with it. I still have the gold and silver ribbons in the cedar chest.
Anyway, back to my story. One day, shortly before Christmas, Brad, our associate pastor, called and asked if he could come and bring us something. He showed up a little while later with a small Christmas tree. He said it was from the "little old ladies" Sunday School class at church. The branches were decorated with money. I still get misty-eyed remembering it. We put the tree up in our living room. It stayed there until late January or early February. Each time I thought I would "undecorate" it, I would change my mind because it was so precious a reminder of those sweet ladies.
Finally I decided that I needed to go ahead and take the money off and put the tree away. As I began the task, I was blessed all over again. Each piece of money had been folded into elaborate fans and shapes and tied with little gold and silver ribbons. I was completely overwhelmed at the sense of love and selflessness represented by that little tree. These sweet little ladies, many of them widows on limited incomes, collected money for us. Then, instead of putting it in an envelope or card, they used their arthritic little fingers to fashion lovely little "ornaments" and tie them to our precious Christmas tree. Tears flowed as I untied each ribbon and unfolded each piece of money. I believe there was $92 on that tree. I tucked it back to do something special with it. I still have the gold and silver ribbons in the cedar chest.
Angels
I can’t go a step further without talking about how we were simply covered over with love, prayers and help during the time Ken was sick and following his death. So many precious people went way beyond the call on our behalf. I am still awestruck at the way God used the people in our lives (and even some we didn’t know personally) to lift us up and encourage us during that dark, sad time. God's Angels doing His work.
First, my Mama basically put her life on hold so that she could be available whenever we needed her help (which was a lot!). I never had to worry about having someone to take care of our boys if we ended up in the hospital. All it took was a phone call and Mama was on her way to Ringgold. Even though my precious Daddy didn’t (and still doesn’t) like to be without her for long, he always told her to go and stay as long as we needed her. Mama was still working then, and her sweet boss, Billy Hunt, always encouraged her to be with us, no matter how many days’ work she had to miss. It was such a relief to both Ken and me that we had someone looking after our boys who loved them as much as we did.
Our family had joined Boynton Baptist Church in Ringgold, GA about three months prior to Ken’s diagnosis.
The whole thing is such an example of God working for your good before you even know it. We had been members of a church in Chattanooga for many years. We were married there, Jesse was baptized there, and Benjamin had been dedicated there, so it held lots of happy memories for us. But God had been “nudging” both Ken and me that we needed to go somewhere else. We visited around several places, but the minute we walked into the sanctuary at Boynton, we felt like we were “home”. I can’t explain why it felt like home, other than God just told us it was. See, He knew we were going to need good friends and lots of support in the coming months. That’s not to say that we didn’t have good friends at our former church–we DID! My best friend and her family are still members there and there are several others that I still consider dear friends. God just wanted us somewhere else. He put us exactly where we needed to be, because I have NEVER seen a church wrap itself in love around a family like Boynton did with us.
Our pastor, Keith McLeod, is one of the godliest men I have ever met. Not only was he our pastor, but he became a good friend as well. He has such a shepherd’s heart, many times he and his wife, Joan, had already anticipated needs we had before we even had a chance to voice them. I am not sure when the ladies in the church started providing our meals, but I know for a fact that they were still bringing us our dinners at least twice a week six months after Ken’s diagnosis. I don’t think I could list everything that church family did for us during those years because they were constantly doing things. Everything from picking up our kids, paying our utility bills, bringing us firewood, calling and visiting, holding our hands and hugging our necks. . . the list just goes on and on.
I guess the most important thing anybody did for us was to PRAY. We had so many people praying for us. In addition to our church family, Mama & Daddy’s church family (which now happens to be our church family), my family, Ken’s family, and friends all over the place, there were even strangers praying for us. I got several emails from people I had never even met who had heard about Ken’s diagnosis and were praying for us. And we SO felt all of those prayers. I, personally, was having a hard time praying during that time. I felt God’s presence in a powerful and mighty way, but I just wasn’t able to put my prayers into words. But even though I couldn’t pray, God let me know that on the days I was too sad or angry or scared to pray, He would lay it on someone else’s mind and heart to “stand in the gap” for me. And they DID! Thank God for people who are willing to stand in the gap for people who are struggling.
First, my Mama basically put her life on hold so that she could be available whenever we needed her help (which was a lot!). I never had to worry about having someone to take care of our boys if we ended up in the hospital. All it took was a phone call and Mama was on her way to Ringgold. Even though my precious Daddy didn’t (and still doesn’t) like to be without her for long, he always told her to go and stay as long as we needed her. Mama was still working then, and her sweet boss, Billy Hunt, always encouraged her to be with us, no matter how many days’ work she had to miss. It was such a relief to both Ken and me that we had someone looking after our boys who loved them as much as we did.
Our family had joined Boynton Baptist Church in Ringgold, GA about three months prior to Ken’s diagnosis.
The whole thing is such an example of God working for your good before you even know it. We had been members of a church in Chattanooga for many years. We were married there, Jesse was baptized there, and Benjamin had been dedicated there, so it held lots of happy memories for us. But God had been “nudging” both Ken and me that we needed to go somewhere else. We visited around several places, but the minute we walked into the sanctuary at Boynton, we felt like we were “home”. I can’t explain why it felt like home, other than God just told us it was. See, He knew we were going to need good friends and lots of support in the coming months. That’s not to say that we didn’t have good friends at our former church–we DID! My best friend and her family are still members there and there are several others that I still consider dear friends. God just wanted us somewhere else. He put us exactly where we needed to be, because I have NEVER seen a church wrap itself in love around a family like Boynton did with us.
Our pastor, Keith McLeod, is one of the godliest men I have ever met. Not only was he our pastor, but he became a good friend as well. He has such a shepherd’s heart, many times he and his wife, Joan, had already anticipated needs we had before we even had a chance to voice them. I am not sure when the ladies in the church started providing our meals, but I know for a fact that they were still bringing us our dinners at least twice a week six months after Ken’s diagnosis. I don’t think I could list everything that church family did for us during those years because they were constantly doing things. Everything from picking up our kids, paying our utility bills, bringing us firewood, calling and visiting, holding our hands and hugging our necks. . . the list just goes on and on.
I guess the most important thing anybody did for us was to PRAY. We had so many people praying for us. In addition to our church family, Mama & Daddy’s church family (which now happens to be our church family), my family, Ken’s family, and friends all over the place, there were even strangers praying for us. I got several emails from people I had never even met who had heard about Ken’s diagnosis and were praying for us. And we SO felt all of those prayers. I, personally, was having a hard time praying during that time. I felt God’s presence in a powerful and mighty way, but I just wasn’t able to put my prayers into words. But even though I couldn’t pray, God let me know that on the days I was too sad or angry or scared to pray, He would lay it on someone else’s mind and heart to “stand in the gap” for me. And they DID! Thank God for people who are willing to stand in the gap for people who are struggling.
Chemo
Chemotherapy is hell on wheels. You fight a monster with poison, but how much of that poison can your body take and you still keep functioning? (Patrick Swayze... Rest in peace, Patrick.)
Chemotherapy has saved the lives of countless numbers of cancer patients. I thank God that He allowed Drs. and researchers the knowledge and wisdom to develop these life-saving treatments. But I have to be honest and say that our days in the chemo lab were some of the hardest ones we faced.
First of all, the world of terminal illness is just plain GRIM. You see it on the face of every patient in the chemo lab. I’m not saying that you don’t also see hope, because you do. There is a supportiveness and camaraderie there that is amazing to behold. But the burden of dealing with horrible diseases and the uncertainty of the ultimate outcome just seems to bear down on a person’s soul and it shows in their eyes.
Ken’s treatments were all-day long ordeals, once every three weeks. He had his first treatment in the hospital. Dr. Schlabach had told us that in about 14 days or so, Ken would probably start to lose his hair. Exactly 14 days later, when I was making the bed, I found huge clumps of Ken's hair left on his pillow. I sobbed and sobbed as I picked up each strand. I couldn’t bear to throw it away. I loved his hair with all of those beautiful curls. I placed the hair in a ziploc bag and put it away in my dresser. I still have it–I had forgotten about it, but found it again when the boys and I moved to Alabama. I sobbed again when I found it. . . still couldn’t bear to part with it. It’s in the cedar chest now.
I think Ken losing his hair was harder on me than it was on him. Before he lost his hair, except for dark circles around his eyes, he didn’t really look that sick. When his hair came out, there was no denying how sick he was. Eventually, he was completely bald and his beard was gone. It was the first time I had ever seen his whole face because he had always had the beard as long as I had known him.
The chemo didn’t make Ken really sick like it does a lot of people. It did make him extremely tired, but I think a lot of that was simply the stress of having to go for the treatment. And, as long as he was having chemo, we had to go back once a week so they could check his blood. Just being at Dr. Schlabach’s office, where the chemo lab was located, always tied Ken up in knots. I guess the worst reaction he had to the chemo, though, was really from the pre-meds. One of them was a steroid, and it affected my sweet, even-tempered husband by making him angry and mean. You could almost bet that the night after a chemo treatment, Ken would be screaming at me about something. I knew it was the medicine, and he was always very contrite and apologetic afterwards, but those nights just ground my weary soul down to dust. I SOOO dreaded chemo days.
Home with "Bill"
We stayed in the hospital about a week, as I remember. Ken was in so much pain, but he would NOT let me ask the nurses to give him any pain medication. His ideas about pain meds would be a constant source of struggle for us over the two years of his illness. Because he had seen a close family member over-medicate herself for most of his life and "act batty" (Ken’s description) because of the meds, he refused to take his medications like he should. The doctors all told him that he would not become addicted as long as he took the meds as directed, but he just did not believe it. His refusal to take his meds really made the entire two years harder on both of us than it had to be, but that was what he believed and there was no shaking it loose.
When we got home, all of the medical supplies were there. I tucked him in the hospital bed–he was so exhausted and in such pain–broke my heart. Then I set about the task of figuring out the feeding pump and all that it entailed.
As I have said previously, the pump they brought to our home was different from the hospital pump, so the instructions they gave me in the hospital weren’t a lot of help. So, for the first week, it was pretty much trial and error (mostly error). There are several things I learned that first week that I believe should be in ALL CAPS, BOLD TYPE on the feeding pump instructions.
1. You should let the liquid gravity feed down the length of the tubing BEFORE you thread the tubing into the pump. If you don’t, the pump will push all the air in the tube into the patient's intestines and cause great pain. (Wouldn’t you think someone should have mentioned a thing like that?!)
2. As long as you are in a climate-controlled house, it is okay to pour more than one can at a time into the bag. You DO NOT have to watch the bag constantly and pour the new can in as the old one runs out. (This I discovered after two sleepless nights,watching the bag all night.)
3. NEVER, NEVER, NEVER let a bag run out of liquid if you are not through with the feeding. If air gets into the tubing, you have to start over with a whole new bag/tube set.
They had Ken on four cans a day of Replete (made by the same company that makes Nestle’s Quick) which is basically Ensure on steroids. At first it would take all day into the night, because we had to drip it very slowly until his system got used to it. Over time, we were able to increase the rate enough to only have to do it at night. I’ve told people that the pump was kind of like having a baby in the house. As long as it was full and not tangled up in the covers, it slept through the night. If the liquid ran out or the tubing got tangled, or Ken laid on top of it, that thing would scream at you until you got up to look after it. Michaelann, our sweet niece, decided that if the feeding pump was going to be a part of our daily lives, it should have a name. So, she christened it "Bill". We loved Bill. . . he helped keep Ken alive for a little over two years.
When we got home, all of the medical supplies were there. I tucked him in the hospital bed–he was so exhausted and in such pain–broke my heart. Then I set about the task of figuring out the feeding pump and all that it entailed.
As I have said previously, the pump they brought to our home was different from the hospital pump, so the instructions they gave me in the hospital weren’t a lot of help. So, for the first week, it was pretty much trial and error (mostly error). There are several things I learned that first week that I believe should be in ALL CAPS, BOLD TYPE on the feeding pump instructions.
1. You should let the liquid gravity feed down the length of the tubing BEFORE you thread the tubing into the pump. If you don’t, the pump will push all the air in the tube into the patient's intestines and cause great pain. (Wouldn’t you think someone should have mentioned a thing like that?!)
2. As long as you are in a climate-controlled house, it is okay to pour more than one can at a time into the bag. You DO NOT have to watch the bag constantly and pour the new can in as the old one runs out. (This I discovered after two sleepless nights,watching the bag all night.)
3. NEVER, NEVER, NEVER let a bag run out of liquid if you are not through with the feeding. If air gets into the tubing, you have to start over with a whole new bag/tube set.
They had Ken on four cans a day of Replete (made by the same company that makes Nestle’s Quick) which is basically Ensure on steroids. At first it would take all day into the night, because we had to drip it very slowly until his system got used to it. Over time, we were able to increase the rate enough to only have to do it at night. I’ve told people that the pump was kind of like having a baby in the house. As long as it was full and not tangled up in the covers, it slept through the night. If the liquid ran out or the tubing got tangled, or Ken laid on top of it, that thing would scream at you until you got up to look after it. Michaelann, our sweet niece, decided that if the feeding pump was going to be a part of our daily lives, it should have a name. So, she christened it "Bill". We loved Bill. . . he helped keep Ken alive for a little over two years.
Hospital
Okay. . . Dr. Valle came out and told me Ken was in the recovery room and the nurses would let me know when they had him in a room. More waiting. I guess about an hour later, Ken's sister-in-law came in and told me they had just moved Ken up to the 7th floor (that is the oncology floor). I'm not sure how she found that out before the nurse called me, but we gathered up all of our stuff and headed that way.
We walked into the biggest hospital room I have ever seen. I actually thought it was a room for two patients and we would have only half (which kind of ticked me off--sick people need their privacy). Then someone explained that the whole room was for us. In addition to Ken's bed, it had a huge bathroom, two sinks w/ mirrors, two doors, a small couch, several chairs, and a full-sized bed for ME. It even had a microwave and mini-fridge. I was kind of stunned. It just so happened that Jayne, my best friend's sister, worked in admitting at Erlanger. When she found out what day Ken was having his surgery, she pulled strings with her co-workers so that they would save that "rock-star room" for us. Bless you, Jayne.
Ken was in A LOT of pain. He wasn't talking. And the room was full of people who wanted to wish him well. It's so hard to tell such sweet, thoughtful people that they need to leave, but that's kind of what I ended up doing. Of course, Ken's parents and brothers all stayed. Every time he asked me for something, one of them would jump up and do it instead. I know they were only trying to help, but Ken wanted me to take care of him. I let them see to him for a while, but I could tell he was getting frutstrated, so I dropped a few BIG hints about how tired he was and that he needed to rest and maybe they could come back tomorrow. One by one, they left.
Finally it was just me and Ken. Or I should say it was me, Ken and the telephone. It rang almost constantly for a couple of hours with people wanting to know how the surgery went. I learned a valuable lesson that night. Always bring a phone extension cord with you if you are going to be staying in the hospital for any length of time (the ones they give you are only about three feet long). That way, you can move the phone to the other side of the room and it won't be ringing right at the paitent's head all the time. I think that first night, I finally ended up disconnecting the phone because it was upsetting Ken so badly.
The next morning, a new doctor, Larry Schlabach, came in and introduced himself to us. He was a medical oncologist and would be Ken's primary oncologist. He told us that Ken's cancer was so advanced and spread out that there wasn't really much they could do. Radiation wasn't an option because they would have to radiate his entire abdomen, which by itself, could be fatal. Surgery wasn't an option because the cancer was stage 4 and was probably in other areas of his body and in his lymph system already. He said that they would try some chemotherapy, see how Ken did, and then decide what to do from there. As I look back on it now, Dr. Schlabach didn't believe that Ken would live through the chemo in the first place. I asked him how long we could expect Ken to live. He said he didn't like to give time-frame prognoses because every patient is different and ultimately, it wasn't in his hands anyway, but in God's hands (it was comforting to know that he was a Christian).
So, over the next couple of days, the nurses showed me how to take care of Ken's feeding tube site and how to hook up the bag for his feedings (which ended up not being very helpful, because the hospital pumps are different from the ones they send to your home). Hospital social workers came and arranged for the equipment we would need when we got home. . . hospital bed, feeding pump and pole, feeding bags and tubing, cans of liquid nourishment, wound care supplies. . . all that stuff I had never seen before but would become an integral part of our lives over the next two years. It was a frightening time, to be sure.
Dr. Schlabach decided that they would give Ken his first chemo treatment at the hospital the day before we went home so they could make sure he wouldn't have any severe reactions to the meds. They started the pre-meds at about six in the morning. About an hour later, they started the chemo. It was two different kinds of chemo (funny, I would have thought that the names of the meds would be burned into my memory forever, but today, I can't remember). There was so little research on Linitus Plastica that there was not really a proven protocol for it. So, they just picked two of the strongest chemo meds they had and tried that. They were so strong that they had to be dripped extremely slowly. The treatments would last about 8 hours each. If they dripped them any faster, one of the meds could cause Ken to lose his hearing and the other one could shut his kidneys down. I remember looking at the IV thinking, I should be happy that those meds are going to try to save my husband's life, but at the same time, I realized that what was flowing into his vein was pure poison. Yes, it might kill the cancer cells, but what else would it be killing as well?
We walked into the biggest hospital room I have ever seen. I actually thought it was a room for two patients and we would have only half (which kind of ticked me off--sick people need their privacy). Then someone explained that the whole room was for us. In addition to Ken's bed, it had a huge bathroom, two sinks w/ mirrors, two doors, a small couch, several chairs, and a full-sized bed for ME. It even had a microwave and mini-fridge. I was kind of stunned. It just so happened that Jayne, my best friend's sister, worked in admitting at Erlanger. When she found out what day Ken was having his surgery, she pulled strings with her co-workers so that they would save that "rock-star room" for us. Bless you, Jayne.
Ken was in A LOT of pain. He wasn't talking. And the room was full of people who wanted to wish him well. It's so hard to tell such sweet, thoughtful people that they need to leave, but that's kind of what I ended up doing. Of course, Ken's parents and brothers all stayed. Every time he asked me for something, one of them would jump up and do it instead. I know they were only trying to help, but Ken wanted me to take care of him. I let them see to him for a while, but I could tell he was getting frutstrated, so I dropped a few BIG hints about how tired he was and that he needed to rest and maybe they could come back tomorrow. One by one, they left.
Finally it was just me and Ken. Or I should say it was me, Ken and the telephone. It rang almost constantly for a couple of hours with people wanting to know how the surgery went. I learned a valuable lesson that night. Always bring a phone extension cord with you if you are going to be staying in the hospital for any length of time (the ones they give you are only about three feet long). That way, you can move the phone to the other side of the room and it won't be ringing right at the paitent's head all the time. I think that first night, I finally ended up disconnecting the phone because it was upsetting Ken so badly.
The next morning, a new doctor, Larry Schlabach, came in and introduced himself to us. He was a medical oncologist and would be Ken's primary oncologist. He told us that Ken's cancer was so advanced and spread out that there wasn't really much they could do. Radiation wasn't an option because they would have to radiate his entire abdomen, which by itself, could be fatal. Surgery wasn't an option because the cancer was stage 4 and was probably in other areas of his body and in his lymph system already. He said that they would try some chemotherapy, see how Ken did, and then decide what to do from there. As I look back on it now, Dr. Schlabach didn't believe that Ken would live through the chemo in the first place. I asked him how long we could expect Ken to live. He said he didn't like to give time-frame prognoses because every patient is different and ultimately, it wasn't in his hands anyway, but in God's hands (it was comforting to know that he was a Christian).
So, over the next couple of days, the nurses showed me how to take care of Ken's feeding tube site and how to hook up the bag for his feedings (which ended up not being very helpful, because the hospital pumps are different from the ones they send to your home). Hospital social workers came and arranged for the equipment we would need when we got home. . . hospital bed, feeding pump and pole, feeding bags and tubing, cans of liquid nourishment, wound care supplies. . . all that stuff I had never seen before but would become an integral part of our lives over the next two years. It was a frightening time, to be sure.
Dr. Schlabach decided that they would give Ken his first chemo treatment at the hospital the day before we went home so they could make sure he wouldn't have any severe reactions to the meds. They started the pre-meds at about six in the morning. About an hour later, they started the chemo. It was two different kinds of chemo (funny, I would have thought that the names of the meds would be burned into my memory forever, but today, I can't remember). There was so little research on Linitus Plastica that there was not really a proven protocol for it. So, they just picked two of the strongest chemo meds they had and tried that. They were so strong that they had to be dripped extremely slowly. The treatments would last about 8 hours each. If they dripped them any faster, one of the meds could cause Ken to lose his hearing and the other one could shut his kidneys down. I remember looking at the IV thinking, I should be happy that those meds are going to try to save my husband's life, but at the same time, I realized that what was flowing into his vein was pure poison. Yes, it might kill the cancer cells, but what else would it be killing as well?
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