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”.
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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