When it came out that dad was dying from cancer on December 9th I had a hard time being in the same room with him without getting physically upset. I felt a great deal of despair and anguish. It was hard for me to talk to him and keep my composure for any length of time. I felt guilty for being like that. Dad doesn't need to worry about other peoples emotional well being. I kept telling him, when I would go through an episode in front of him, that I was only human, that I was sorry and this is what happens when you love someone. He just kept telling me to be strong. After some practice I learned how to turn my emotions off. I soon discovered there were consequences to that though. Whenever I would be away from dad my emotions would turn back on and it would be like a pot boiling over on the stove. I had a hard time regaining composure. I also started experiencing severe anxiety that inevitably lead to passive aggressive behavior towards other people. Of course the anger stage is part of the acceptance of loss. I think that by being around dad everyday and seeing him in his current condition, that has somewhat desensitized me. I am still shocked by things from time to time... You never get use to seeing someone in a severe emaciated state. I have gotten so I can talk about him and be with him without feeling any grief. I worry sometimes that people might misunderstand and think that i'm not effected by this at all. I don't want to come across as cold, but I've gone through the acceptance of dad's eminent passing. I'm ok at the moment with it.
I can't explain what it feels like once you've gotten past the grief part of losing someone. I think it depends upon the person more than anything. For me, I'm at a point where I just have an urgency to do what I can for dad while he's still here. I am driven by the need to be with him all the time, which i would imagine, is taking a toll on my relationship with Mike. Mike understands though, and it probably does a long term relationship good to have some distance in it from time to time. I've also developed a more critical view of my sisters, but I'm trying hard to understand their actions, or lack thereof... I think once dad is gone I'm going to shatter once again, but I've seen my strength and I know I'll be able to put myself back together again.
Mom is having a difficult time with this. She has gone from having the nervous shakes in her hands and the constant red eyes to being a little calmer and less emotional. She has learned how to change dad's ileostomy bag without panicking. If you've ever seen such a thing, they are difficult. Once you get past the aesthetics of it and see it for it's purpose and function, well it's not so bad. She's also learned how to change the sheets on dad's bed with him on it. That actual comes in handy for many situations in life, it's easier to do than it sounds.
I've learned that when sitting with someone who is dying, conversation isn't always a welcomed thing. Something to always remember, when speaking with someone who is in such a situation is to always direct your conversation to that person. Remember they aren't hard of hearing, so there is no reason to speak loudly. Don't ask how they are doing, ask them how they are feeling at the moment. When there are two or more people visiting in the room, don't converse about things outside of the experience, the person dying doesn't want to hear about such things. Don't gossip or be negative about things, and don't whisper to each other. When in a separate room beyond the dying person, but still within earshot, don't laugh and carry on in mindless conversation. These are things that bother my dad, and would probably anyone in the same situation.
Saturday, January 2, 2010
The week following December 12th
It was really nice that we were able to spend that special day with dad on the 12th. He was very happy with how things turned out.
Sunday, dad had a steady stream of visitors from his church. He is well loved and he received everyone very gracefully and stoically. Many family members started coming in from out of town to visit. I hadn't seen most of these people in over 20 years. They all seemed to notice that I wasn't the thin fellow I use to be, and they all seemed to comment on that, which really bothers me... I'll have a different neurosis after this is all over...
Monday a hospice facilitator came out and we learned that they could provide dad with a lawyer. I had already made an appointment with one the previous week, but this was much better. After a quick phone call, the lawyer that worked with hospice came out to the house. We met with him and dad discussed his wishes. Dad had hand written his will the past Friday so it was a simple task. So, with great relief, by Tuesday this would be final.
Dad gave me Power of Attorney over his health care. I didn't know about the health care part. With great relief it was made clear that hospice would take the responsibility of "pulling the plug" as it were, I sighed in relief. I was concerned that I was taking all of this away from mom, but she assured me that it was fine. I was genuinely surprised that dad would give me this responsibility. I had never been one to step up to any responsibility in the past. Apparently dad knew I needed this to restore my confidence. I dove right into it and I didn’t seem to second guess myself. I had everything he needed done within a week. Contacted all of his insurance companies, his retirement issuers, called people, and even started helping him with his Ileostomy bag. He had asked me to learn how to do that in case no one was available. When I first watched the nurse take it off and change it out and clean him up I thought I would fall out on the spot. I’ve always had a tendency towards being squeamish. I’ve mastered it now and he likes it when I change it out. He says I have a knack for care giving. He told me I was his right hand man. That didn’t help my attempt at being stoic.
Tuesday, hospice came out to bring dad a hospital bed. It was decided that it would be placed in front of the living room window. That was a good decision because not only could he be a part of everything, but he’d have the best view in the house. The two large windows that are against his bed are the same length as the bed, so he’d have a nice view of the trees and the birds and the morning sun. There were so many people visiting dad when the bed finally came that mom and I were very frustrated with the situation. Dad was tired and we had to get everything out of the room and yet there were at least 12 people standing or sitting in the kitchen. No one seemed to understand that they needed to leave...
Sunday, dad had a steady stream of visitors from his church. He is well loved and he received everyone very gracefully and stoically. Many family members started coming in from out of town to visit. I hadn't seen most of these people in over 20 years. They all seemed to notice that I wasn't the thin fellow I use to be, and they all seemed to comment on that, which really bothers me... I'll have a different neurosis after this is all over...
Monday a hospice facilitator came out and we learned that they could provide dad with a lawyer. I had already made an appointment with one the previous week, but this was much better. After a quick phone call, the lawyer that worked with hospice came out to the house. We met with him and dad discussed his wishes. Dad had hand written his will the past Friday so it was a simple task. So, with great relief, by Tuesday this would be final.
Dad gave me Power of Attorney over his health care. I didn't know about the health care part. With great relief it was made clear that hospice would take the responsibility of "pulling the plug" as it were, I sighed in relief. I was concerned that I was taking all of this away from mom, but she assured me that it was fine. I was genuinely surprised that dad would give me this responsibility. I had never been one to step up to any responsibility in the past. Apparently dad knew I needed this to restore my confidence. I dove right into it and I didn’t seem to second guess myself. I had everything he needed done within a week. Contacted all of his insurance companies, his retirement issuers, called people, and even started helping him with his Ileostomy bag. He had asked me to learn how to do that in case no one was available. When I first watched the nurse take it off and change it out and clean him up I thought I would fall out on the spot. I’ve always had a tendency towards being squeamish. I’ve mastered it now and he likes it when I change it out. He says I have a knack for care giving. He told me I was his right hand man. That didn’t help my attempt at being stoic.
Tuesday, hospice came out to bring dad a hospital bed. It was decided that it would be placed in front of the living room window. That was a good decision because not only could he be a part of everything, but he’d have the best view in the house. The two large windows that are against his bed are the same length as the bed, so he’d have a nice view of the trees and the birds and the morning sun. There were so many people visiting dad when the bed finally came that mom and I were very frustrated with the situation. Dad was tired and we had to get everything out of the room and yet there were at least 12 people standing or sitting in the kitchen. No one seemed to understand that they needed to leave...
A Letter to Dad.
Dad holding me when I was a toddler.
I wanted to give dad something on the 12th at his Christmas day. I struggled with what that would be. I decided to write him a letter, but I knew that in dads condition it couldn't be too wordy and too complicated. So instead of spending a week writing and rewriting and over editing I came up with a short letter that summed it all up very simply. Looking over it now, it reads somewhat childlike. It was a collaboration between my adult self and my 12 year old inner child. It also didn't help that I was a total emotional wreck as I wrote it. I wanted it to read as the present and not past tense. Dad is still with us and as long as he is nothing is past tense.
_____________________________________________
Dad,
You started me out early in life with walks in the woods and fishing trips that always led to discussions about birds and animals and amphibians and fish. You taught me how to fish, from tying knots for hooks, to how to fish for certain fish, and how to cast a line and how to motor and paddle a boat. You taught me how to properly put a cricket on a hook, which is why I will always use crickets when I fish. You taught me about birds. You taught me about how to identify them and I love to talk to you about them so much. You taught me how to take care of my fishing equipment, how to take care of basic car maintenance, how to take care of a lawn mower. You’ve taught me how to deal with people, and you’ve always taught me to love and appreciate people and how to forgive. I do all those things because you showed me how by living the example and I’m glad that I am able to do that. All these things will benefit me for the rest of my life and I have those things only because you love me enough to show me those things. You have made me the happiest and richest man alive. You have given me so much that will give me joy for the rest of my life. You have solved so many problems for me and I was always able to see why you gave me the solutions you did and because of that I am able to solve problems with greater ease now. You have handed me down so much wisdom.
I have discovered that the older I get the more like you I am becoming. I have your sense of humor and I have your seriousness, I have your gentleness and kindness. I even have a voice similar to yours. I know we have always had a little confusion because we share the same name. That use to be a bit frustrating at times for us, but I have grown to cherish that name, only because it’s yours as well.
So as my life continues I look forward to rediscovering your family. I am going to make it a point to get out and visit them more often. I look forward to enjoying all the things you’ve instilled in me.
I love you so much dad, I can’t say that enough. I feel loved by you and I always have and I always will.
Love your Son
Friday, January 1, 2010
Dad's Christmas
On December the 12th, a Saturday, we had our Christmas with dad. I don't remember if we ate or not. I remember we all were in the living room with him. Me, my partner Mike, Teresa and her husband Gary and their daughter Brittany, Debbie and Kevin and their Daughter Tori. I was videoing the event. I didn't do a very good job, my hands were shakey and I didn't realize that the sd card was almost full, so I didn't get all of it... There are no pictures of this day either, which really upsets me. So basically it starts out with the granddaughters, Brittany and Tori, getting their gifts from dad first. Tori opened up hers and it was a necklace and matching earing set, and then Brittany opened hers, and it was the Jewelry Box that played "What a wonderful World" by Louis Armstrong. It wasn't the typical tune, it was the actual song with him singing it. We all were trying to stifle our grief at that point. Then Mike, Kevin and Gary all opened up their gifts. Dad had gotten them collector knife sets. Then Debbie and Teresa opened theirs.
After it was over we all sort of drifted to different parts of the house. We were trying so hard to come to terms with what was happening. Mike and I stayed a long time after everyone left. I didn't want this day to end, and suddenly I couldn't bear to be away from my father...
After it was over we all sort of drifted to different parts of the house. We were trying so hard to come to terms with what was happening. Mike and I stayed a long time after everyone left. I didn't want this day to end, and suddenly I couldn't bear to be away from my father...
Dad's Christmas Wishes
On the way home from the Doctors visit that morning, the one where we found out that dad was dying and only had a short time left, we stopped at the post office for some reason or another. I think mom had to mail a letter, or a bill. I was driving the van and dad was sitting in the front seat beside me. I couldn't speak to him without crying. I was so overwhelmed.
When we got home Dad settled into his recliner and called me and mom into the living room. Mom and I were still in shock from what the doctor had just told us a few hours ago. He asked me to go get some personal effects for him. We all three sat in the living room and dad gave us a few things, along with instructions, necessary for carrying out his first wishes. We all three tried so hard to hold it together, but it was an impossibility. The floodgates had been opened, and until all the water ran through them, it would be a while before it would be dry. He instructed us to go out and buy Christmas from him to the family.
For the past couple of years dad would always buy us something useful, but he'd present us with something odd first. An example would be the one Christmas my sisters and I each received a plastic spatula. I assume, like me, they thought "ok, maybe I need a spatula..." Then later in the evening we'd get the actual gift, which was an electric skillet. See, you can’t use a metal spatula on the skillet, it will scratch the Teflon off. So per instructions by dad I had to find three sets of really nice cookware for myself and my two sisters. I had to find a hand towel, because you need to hand towel to wash the pots and dry them immediately so they won’t spot. I also needed to find two sets of jewelry for both of my nieces. I suggested a keepsake jewelry box to the put the jewelry in, which he thought was a good idea. He also wanted me to go out and buy mom a new stove. Mom didn’t want one just yet. I understand now, it was too much for her to handle.
So basically my dad came home from the doctor’s visit with a sense of urgency to take care of things. He didn’t think he’d be here at Christmas time so he wanted to have Christmas on the 12th. I can only imagine what was going through his mind at the time. I know I was being driven by this latest task of getting Christmas together, so I didn’t have time to grieve too much. My mom on the other hand was a basket case.
As we got into the car to drive to Raleigh, she just let it all go. I supported her the best I could. I was overwhelmed myself and had never had to help anyone through a situation like this. My uncle stayed with dad while mom and I were out and about. We ended up going to Crabtree. The first place we went was to Things Remembered. We found a nice silver heart shaped jewelry box. It played “What a Wonderful World” by Louis Armstrong. We both cried when we listened to it in the store. I’m sure the sales clerk wondered what she had gotten herself into. We had them both engraved to say “I will Love you always… Grandpa" Afterwards we went to Belks and found three sets of really nice Emeril Lagasse cookware sets. Dad wanted me to haggle… I don’t haggle, but I did for him. We then found three really nice dish towels. Dad also wanted me to pick up a gift for my two brother-in-laws and Mike. So I found them all three a collectors knife set. After having everything gift wrapped we headed home.
My sisters came over that night and they put up the Christmas tree. I had to call dad’s brothers to tell them the news about dad. It was difficult, but it was a task that dad gave me. He seemed to know that if he kept me busy, he’d keep my mind off of grieving. I did quite a bit of that when I went home at night. I just couldn’t get over this. It was hard.
When we got home Dad settled into his recliner and called me and mom into the living room. Mom and I were still in shock from what the doctor had just told us a few hours ago. He asked me to go get some personal effects for him. We all three sat in the living room and dad gave us a few things, along with instructions, necessary for carrying out his first wishes. We all three tried so hard to hold it together, but it was an impossibility. The floodgates had been opened, and until all the water ran through them, it would be a while before it would be dry. He instructed us to go out and buy Christmas from him to the family.
For the past couple of years dad would always buy us something useful, but he'd present us with something odd first. An example would be the one Christmas my sisters and I each received a plastic spatula. I assume, like me, they thought "ok, maybe I need a spatula..." Then later in the evening we'd get the actual gift, which was an electric skillet. See, you can’t use a metal spatula on the skillet, it will scratch the Teflon off. So per instructions by dad I had to find three sets of really nice cookware for myself and my two sisters. I had to find a hand towel, because you need to hand towel to wash the pots and dry them immediately so they won’t spot. I also needed to find two sets of jewelry for both of my nieces. I suggested a keepsake jewelry box to the put the jewelry in, which he thought was a good idea. He also wanted me to go out and buy mom a new stove. Mom didn’t want one just yet. I understand now, it was too much for her to handle.
So basically my dad came home from the doctor’s visit with a sense of urgency to take care of things. He didn’t think he’d be here at Christmas time so he wanted to have Christmas on the 12th. I can only imagine what was going through his mind at the time. I know I was being driven by this latest task of getting Christmas together, so I didn’t have time to grieve too much. My mom on the other hand was a basket case.
As we got into the car to drive to Raleigh, she just let it all go. I supported her the best I could. I was overwhelmed myself and had never had to help anyone through a situation like this. My uncle stayed with dad while mom and I were out and about. We ended up going to Crabtree. The first place we went was to Things Remembered. We found a nice silver heart shaped jewelry box. It played “What a Wonderful World” by Louis Armstrong. We both cried when we listened to it in the store. I’m sure the sales clerk wondered what she had gotten herself into. We had them both engraved to say “I will Love you always… Grandpa" Afterwards we went to Belks and found three sets of really nice Emeril Lagasse cookware sets. Dad wanted me to haggle… I don’t haggle, but I did for him. We then found three really nice dish towels. Dad also wanted me to pick up a gift for my two brother-in-laws and Mike. So I found them all three a collectors knife set. After having everything gift wrapped we headed home.
My sisters came over that night and they put up the Christmas tree. I had to call dad’s brothers to tell them the news about dad. It was difficult, but it was a task that dad gave me. He seemed to know that if he kept me busy, he’d keep my mind off of grieving. I did quite a bit of that when I went home at night. I just couldn’t get over this. It was hard.
Thursday, December 31, 2009
Wednesday December 9th.
After much concern as to why dad was getting worse since coming home from his stay at the hospital, we took him to his doctor. We find out the truth on this day. Dad already knew, he was protecting us all.
Dr.: Are you tired? Just lie back. Are you eating ok?
Dad: Yeah ok.
Mom: He’s eating. I’m keeping something in his mouth all the time.
Dr. : your arms aren’t as small as they were last time.
Mom: It just worries us that he’s still weak. He’s walking back and forth in the
house every day.
Dr. Well look, let’s be brutally honest with each other, we’ve got cancer we’re dealing with here.
Mom: I know
Dr.: Cancer will wear you out, and the question I’ve got is what is Dr.______ plan?
Mom: That’s something we don’t know.
Dr.: When are you suppose to go back and see Dr. _______?
Mom: We don’t know, did you make an appointment William?
Dr.: Time to make an appointment and go back to see Dr. _______
Dad: If I’ll be able to make it there, If I’ll be able to make it back.
Dr.: Well, see the thing is if you can’t make it back he’s not going to start you on chemotherapy. If we don’t start you on chemotherapy we’re not going to be able to beat back the cancer at all.
(The dr. looks at dad’s incision)
Dr.: oh this looks great. Have ya’ll helped with this or have you tried to stay away from that?
Mom: Oh, I’m helping the nurses
Dr.: Ok, because it looks great, the wound looks good.
Mom: good.
Dr.: Ok, what I’m going to do today is have one of the ladies take the rest of the staples out because you don’t need them. This looks like it’s doing really good. Cough for me… Ok. You’re getting your Ensure and you’re keeping that down?
Dad: yes
Dr.: Ok, alright, um, the cancer is winning. As long as you are losing weight, the cancer is winning.
Mom: yeah
Dr.: I’m not going to lie to you and I’m not going to sugar coat it, if we can’t get weight onto you it’s because the cancer is using your calories more than you are. Ok, it’s sort of like running a car with the air conditioner on and you don’t get as good gas mileage because the air conditioner is using the gas, rather than the engine using the gas to drive all wheels. What we need to do is, if possible, get to a point where we can start killing those cancer cells, but we can’t do that till you start to get a little bit stronger. This is also taking energy away, the wound infection is, but this is looking as good as I would have expected it to look in a week. We’re going to take the stitches out, take the staples out, and redress it. Um and I want to check you back in a week and we’ll weigh you again today.
I can’t make out a lot of what dad is saying in the recording, so I’ll leave out most of it. He’s basically talking about his weight and how he had been weighing himself every day. At this point he doesn’t have the strength to walk or get into the car. He’s very worried that he won’t be able to make it back. We all wanted dad to go back into the hospital. I’ll jump ahead a little. He was down to 119lbs this particular day. you’ve got to eat. The question is this, are you ok at home now?
Dad: I’m ok, like I say it’s just hard to get up and down. I feel good, but if I could just get fluids back in my body again. When I was in the hospital my hands were puffy and I had fluid all over. Now I drink a lot, I’ve drank ensure, three or four bottles a day. I eat well, I’m just extremely weak.
Dr.: Well the problem is the more that you are losing, the more weight that you lose, the more weakness you have, the bigger advantage the cancer has. Ok, and that’s the problem. We need you to get strength and muscles because looking at you from last week to this week the wound looked fine. The rest of you looks like you are almost a third of a man as you were last week, and when you tell me you’re afraid you won’t be able to come back to see me next week that worries me.
Mom: well when do we need to get in touch with Dr. _____?
Dr.: Dr.______ is not going to start him on chemotherapy until he starts getting some strength back. So it’s sort of a double edged sword. Ok, if I made an appointment for you to see Dr. _____ could you get over to see him?
Mom: yeah we’ll get him over there, we’ll take him.
Dr.: We can set that up for you before you leave and we’ll take the stitches out. I’ve never lied to my patients because I think it is important that they know if things don’t get any better over a course of the next few days or a week you might want to start thinking about who you want to talk to. Are there any people in your life that you want to talk to? You know what I’m saying? Ok.
At this point I am totally confused. Dad and the Dr. had led us to believe that his cancer was slow growing. That he would have a good chance of recovery and he would be able to fight this. Dad had told me on the way there that day to not ask any questions…
Bill: Can I ask you a question? Dad, don’t get mad at me, but could you please explain the cancer to me?
Dr.: I’m not sure what you mean?
Bill: What is it?
Dr.: It started out in his small intestines and the name of the cancer is Carcinoid cancer. It has spread to the liver already. I think we had 40 lymph nodes that we took out, I think there was cancer in 12 of them. So the cancer is in many places besides where it started. It was responsible for the death of the intestines. Cancer is a problem because it acts like a weed. It won’t just grow wild in its own garden, but it puts seeds out in the air like a dandelion puts out the little puff things and any place they land, they start to grow. The cancer, if you want to think about it like that, is like another person or another animal living inside you. It is constantly competing with you for your food and your energy and the more of it there is the more that it takes from you. That is why people waste from cancer. We don’t really understand why but we conceptually think that it’s a competitive thing and the cancer cells grow very, very fast. One and two they don’t die, they stay around much longer than regular cells do. Cells in our body are dying all the time. That’s normal for a cycle. Women understand that because they exfoliate themselves. They get rid of the dead skin cells. Cancer cells stay around for much longer than they should. There are two reasons, their metabolic rate is much higher, they need more calories per cell than the rest of the body does and secondly they don’t die when they should. For both of those things, they cause the body to use itself up. The first thing the body uses is fat. That has the highest energy per pound, per gram. Once the fat is gone, then it starts using muscles. What we’re watching now is muscles are being used up because that is the protein the body is burning to feed its needs right now. That’s not a good thing. We’d rather it be using fat or sugar, not proteins. Does that sort of make sense to you?
Bill: Yes it does
Dr.: we know that there is cancer in the liver, we knew that from the day we operated. We saw that there was a mass there about yay big and in all likelihood elsewhere as well. What we learned from surgery was that it wasn’t just in his liver, it is all in the tissue around the intestines and the only way that you can control that, if you can control it, is with medicine and there is no guarantee that the medicine will control it. What we know is this is advanced. The thing that people always ask me is we know that he was fine till he was operated on. He wasn’t, you weren’t. You knew for a long time and it’s like watching something snowball. The snowball that starts at one speed seems to be going faster as it gets to the bottom because for months the snowball has been getting bigger and gaining more momentum. So that when you finally notice the snowball you’re like “how did it get it so big so fast?” It didn’t get so big so fast after surgery. It’s just in surgery it was at the same speed, but because it was so big it had a head start and it just looks like surgery made it go faster. That’s not the way it is. So what we need to do, I’m not sugar coating it. We need you to be able to get some strength and get some food in.
Dad: I’ve worked hard.
Dr.: I know you have. You need to get over to see Dr. ____ to see if he thinks you can tolerate chemotherapy.
My dad says something and I can barely make out his voice, but I’ve listened to it over and over and I’m pretty sure he says the following.
Dad: I might as well just go on home.
Dr.: Well I understand why you’d feel that way and one of the things we do is never take hope away from people but things are very very bad. There’s no question about that. Things are very, very bad. That is why one of the questions I am asking you is are ok with being at home, or have you reached a point where you need to be in a facility where you need help getting around or are there people at home that are able to take care of you?
Dad: Right now I am able. Let me go as long as I can to help myself.
Dr.: that’s fine and you know it’s really hard to have these conversations, but you need to be able to hear from him what he wants because you can’t make him feel guilty and it’s ok to cry. That’s alright, but you got to hear what he wants and what he’s ready for and you can help him better if you know it. One of the things about life is people always tell me that the patients can’t take the truth. It’s always the families that can’t take the truth. Patients do just fine, because patients know. Now, what I want to do is I want to make you as well as I can. I don’t want to beat you up. I don’t want to put you through anything that is really torturous, but you don’t need to take your weight everyday to know that there isn’t as much of you as there was last week. You know that losing weight that fast is not a good thing. Once the water weight is gone and it’s just muscles you’ve got a problem and I think that, um, the question I’ve got for you is, quite frankly, are you at peace? Ok, you need to talk to them; you need to talk to them about this.
Again dad’s response is so faint that I have listened to it and tried to remember as much as I can and I’m pretty sure he says the following.
Dad: I don’t want any treatment.
Dr.: Ok, I’m not pushing that. Is there anything I can do? Am I being too unkind here?
Dad: No
Dr.: don’t tell me that to make my conscience better.
Dad: If I can’t get back to see you what do I do?
Dr.: you call me; we’ll take care of it by phone. See, we have people to come out to the house to take care of you. We can arrange for that. Ok?
A lot of the conversation at this point involves me and mom and the doctor talking over each other, and it’s very difficult to make out things word for word. Essentially we were discussing Hospice care, and arranging for an initial appointment. Dad was concerned that he was doing something wrong and the doctor was assuring him that he wasn’t. This was the first time we had found out that his cancer had spread throughout his body. We didn’t know it was this grave. Mom and I both hit the floor and shattered as it were.
Dr.: Are you tired? Just lie back. Are you eating ok?
Dad: Yeah ok.
Mom: He’s eating. I’m keeping something in his mouth all the time.
Dr. : your arms aren’t as small as they were last time.
Mom: It just worries us that he’s still weak. He’s walking back and forth in the
house every day.
Dr. Well look, let’s be brutally honest with each other, we’ve got cancer we’re dealing with here.
Mom: I know
Dr.: Cancer will wear you out, and the question I’ve got is what is Dr.______ plan?
Mom: That’s something we don’t know.
Dr.: When are you suppose to go back and see Dr. _______?
Mom: We don’t know, did you make an appointment William?
Dr.: Time to make an appointment and go back to see Dr. _______
Dad: If I’ll be able to make it there, If I’ll be able to make it back.
Dr.: Well, see the thing is if you can’t make it back he’s not going to start you on chemotherapy. If we don’t start you on chemotherapy we’re not going to be able to beat back the cancer at all.
(The dr. looks at dad’s incision)
Dr.: oh this looks great. Have ya’ll helped with this or have you tried to stay away from that?
Mom: Oh, I’m helping the nurses
Dr.: Ok, because it looks great, the wound looks good.
Mom: good.
Dr.: Ok, what I’m going to do today is have one of the ladies take the rest of the staples out because you don’t need them. This looks like it’s doing really good. Cough for me… Ok. You’re getting your Ensure and you’re keeping that down?
Dad: yes
Dr.: Ok, alright, um, the cancer is winning. As long as you are losing weight, the cancer is winning.
Mom: yeah
Dr.: I’m not going to lie to you and I’m not going to sugar coat it, if we can’t get weight onto you it’s because the cancer is using your calories more than you are. Ok, it’s sort of like running a car with the air conditioner on and you don’t get as good gas mileage because the air conditioner is using the gas, rather than the engine using the gas to drive all wheels. What we need to do is, if possible, get to a point where we can start killing those cancer cells, but we can’t do that till you start to get a little bit stronger. This is also taking energy away, the wound infection is, but this is looking as good as I would have expected it to look in a week. We’re going to take the stitches out, take the staples out, and redress it. Um and I want to check you back in a week and we’ll weigh you again today.
I can’t make out a lot of what dad is saying in the recording, so I’ll leave out most of it. He’s basically talking about his weight and how he had been weighing himself every day. At this point he doesn’t have the strength to walk or get into the car. He’s very worried that he won’t be able to make it back. We all wanted dad to go back into the hospital. I’ll jump ahead a little. He was down to 119lbs this particular day. you’ve got to eat. The question is this, are you ok at home now?
Dad: I’m ok, like I say it’s just hard to get up and down. I feel good, but if I could just get fluids back in my body again. When I was in the hospital my hands were puffy and I had fluid all over. Now I drink a lot, I’ve drank ensure, three or four bottles a day. I eat well, I’m just extremely weak.
Dr.: Well the problem is the more that you are losing, the more weight that you lose, the more weakness you have, the bigger advantage the cancer has. Ok, and that’s the problem. We need you to get strength and muscles because looking at you from last week to this week the wound looked fine. The rest of you looks like you are almost a third of a man as you were last week, and when you tell me you’re afraid you won’t be able to come back to see me next week that worries me.
Mom: well when do we need to get in touch with Dr. _____?
Dr.: Dr.______ is not going to start him on chemotherapy until he starts getting some strength back. So it’s sort of a double edged sword. Ok, if I made an appointment for you to see Dr. _____ could you get over to see him?
Mom: yeah we’ll get him over there, we’ll take him.
Dr.: We can set that up for you before you leave and we’ll take the stitches out. I’ve never lied to my patients because I think it is important that they know if things don’t get any better over a course of the next few days or a week you might want to start thinking about who you want to talk to. Are there any people in your life that you want to talk to? You know what I’m saying? Ok.
At this point I am totally confused. Dad and the Dr. had led us to believe that his cancer was slow growing. That he would have a good chance of recovery and he would be able to fight this. Dad had told me on the way there that day to not ask any questions…
Bill: Can I ask you a question? Dad, don’t get mad at me, but could you please explain the cancer to me?
Dr.: I’m not sure what you mean?
Bill: What is it?
Dr.: It started out in his small intestines and the name of the cancer is Carcinoid cancer. It has spread to the liver already. I think we had 40 lymph nodes that we took out, I think there was cancer in 12 of them. So the cancer is in many places besides where it started. It was responsible for the death of the intestines. Cancer is a problem because it acts like a weed. It won’t just grow wild in its own garden, but it puts seeds out in the air like a dandelion puts out the little puff things and any place they land, they start to grow. The cancer, if you want to think about it like that, is like another person or another animal living inside you. It is constantly competing with you for your food and your energy and the more of it there is the more that it takes from you. That is why people waste from cancer. We don’t really understand why but we conceptually think that it’s a competitive thing and the cancer cells grow very, very fast. One and two they don’t die, they stay around much longer than regular cells do. Cells in our body are dying all the time. That’s normal for a cycle. Women understand that because they exfoliate themselves. They get rid of the dead skin cells. Cancer cells stay around for much longer than they should. There are two reasons, their metabolic rate is much higher, they need more calories per cell than the rest of the body does and secondly they don’t die when they should. For both of those things, they cause the body to use itself up. The first thing the body uses is fat. That has the highest energy per pound, per gram. Once the fat is gone, then it starts using muscles. What we’re watching now is muscles are being used up because that is the protein the body is burning to feed its needs right now. That’s not a good thing. We’d rather it be using fat or sugar, not proteins. Does that sort of make sense to you?
Bill: Yes it does
Dr.: we know that there is cancer in the liver, we knew that from the day we operated. We saw that there was a mass there about yay big and in all likelihood elsewhere as well. What we learned from surgery was that it wasn’t just in his liver, it is all in the tissue around the intestines and the only way that you can control that, if you can control it, is with medicine and there is no guarantee that the medicine will control it. What we know is this is advanced. The thing that people always ask me is we know that he was fine till he was operated on. He wasn’t, you weren’t. You knew for a long time and it’s like watching something snowball. The snowball that starts at one speed seems to be going faster as it gets to the bottom because for months the snowball has been getting bigger and gaining more momentum. So that when you finally notice the snowball you’re like “how did it get it so big so fast?” It didn’t get so big so fast after surgery. It’s just in surgery it was at the same speed, but because it was so big it had a head start and it just looks like surgery made it go faster. That’s not the way it is. So what we need to do, I’m not sugar coating it. We need you to be able to get some strength and get some food in.
Dad: I’ve worked hard.
Dr.: I know you have. You need to get over to see Dr. ____ to see if he thinks you can tolerate chemotherapy.
My dad says something and I can barely make out his voice, but I’ve listened to it over and over and I’m pretty sure he says the following.
Dad: I might as well just go on home.
Dr.: Well I understand why you’d feel that way and one of the things we do is never take hope away from people but things are very very bad. There’s no question about that. Things are very, very bad. That is why one of the questions I am asking you is are ok with being at home, or have you reached a point where you need to be in a facility where you need help getting around or are there people at home that are able to take care of you?
Dad: Right now I am able. Let me go as long as I can to help myself.
Dr.: that’s fine and you know it’s really hard to have these conversations, but you need to be able to hear from him what he wants because you can’t make him feel guilty and it’s ok to cry. That’s alright, but you got to hear what he wants and what he’s ready for and you can help him better if you know it. One of the things about life is people always tell me that the patients can’t take the truth. It’s always the families that can’t take the truth. Patients do just fine, because patients know. Now, what I want to do is I want to make you as well as I can. I don’t want to beat you up. I don’t want to put you through anything that is really torturous, but you don’t need to take your weight everyday to know that there isn’t as much of you as there was last week. You know that losing weight that fast is not a good thing. Once the water weight is gone and it’s just muscles you’ve got a problem and I think that, um, the question I’ve got for you is, quite frankly, are you at peace? Ok, you need to talk to them; you need to talk to them about this.
Again dad’s response is so faint that I have listened to it and tried to remember as much as I can and I’m pretty sure he says the following.
Dad: I don’t want any treatment.
Dr.: Ok, I’m not pushing that. Is there anything I can do? Am I being too unkind here?
Dad: No
Dr.: don’t tell me that to make my conscience better.
Dad: If I can’t get back to see you what do I do?
Dr.: you call me; we’ll take care of it by phone. See, we have people to come out to the house to take care of you. We can arrange for that. Ok?
A lot of the conversation at this point involves me and mom and the doctor talking over each other, and it’s very difficult to make out things word for word. Essentially we were discussing Hospice care, and arranging for an initial appointment. Dad was concerned that he was doing something wrong and the doctor was assuring him that he wasn’t. This was the first time we had found out that his cancer had spread throughout his body. We didn’t know it was this grave. Mom and I both hit the floor and shattered as it were.
Wednesday, December 30, 2009
Home the Saturday after Thanksgiving
So it was very difficult having dad in the hospital on Thanksgiving day. I knew that it would be even harder on mom so I had fretted about having as normal of a day as I could for her, and it had finally come. I cooked a 20 lb turkey and some of the trimmings, my sister brought a few dishes over. We all tried to have a good day, it was difficult not having dad home. After we ate the family dispersed fairly quickly, which was sad for me because it was over so soon. Dad wanted me to bring him some pumpkin pie when I came up to see him. He didn't really get to eat any, he was still too sick.
On Saturday Mike and I had gone up to Raleigh to unwind at Borders. It had just been so hard on me with everything that had been happening to dad. We had just sat down and I remember getting my coffee and picking out a book to read when mom called. She said they were going to release dad from the hospital and she needed me to come and get them. I was overwhelmed and I was trying to figure out a way to get out of having to take on that responsibility. I really feel horrible about that now, but it was just my emotions at the time. We finally made it to the hospital an hour later and dad was still waiting in his room to be checked out. Teresa and Gary were there as well. We all were sort of shocked that he was going home so soon. None of us believed he was ready, but his doctor did... I drove him and mom back to the house while Mike followed in our car. I remember I drove so carefully. I think I literally held my breath all the way home. I had to be so aware of stopping and starting and turning corners. I was carrying home a very sick and delicate man that I wanted to make as comfortable as possible. It seemed so foreign to me having to help my dad out of the car and into the house. It took us all, Teresa, Gary, Mike, mom and me, to help dad. He had no strength, no leg muscles to lift and move his body up those steps. After we had done that, I was suddenly aware that dad wasn't the man that I had spent the spring fishing with, he was a shell, a very fragile shell.
Once he got settled into the living room and in the recliner, he wrapped up in a soft blue throw and tried to acclimate as best he could. We all thought this was the beginning of recovery. He had a hard time those first few days. Mom didn't know what to do to help him, and dad was trying to learn how to empty his own ileostopy bag. He was actually walking back and forth to the bathroom to empty his bag. He started eating more and more, but everyday he weighed and he kept losing weight. Till finally 11 days later we took dad back to his doctor to find out what was going on.
The emergency surgery
This was right after dad's emergency surgery. He was still in ICU.
The Emergency Surgery
On November the 20Th I received a phone call from mom around 6:00 a.m. She had to call 911 at around 4:00 a.m for dad. Dad had gotten up to go to the bathroom and that is around the time his small intestines had ruptured. Mom relayed to me later that dad literally had to crawl back to the bedroom because he was in so much pain. I didn't get to the hospital til around 10 that morning. I recorded the conversation with dad's doctor that performed his surgery that day. Only because I have a hard time retaining information and when you're under stress you don't always hear everything at the time. I transcribed it and edited it for easier reading. I'll let the good doctor explain things... This conversation was immediately after dad's surgery on November 20Th. So this is the first we were told of what was going on with dad.
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November 20th 2009
The morning of dad's bowel perforation surgery
Doctor's conversation with family after surgery
Dr.: Your husband was pretty sick, and he got extremely sick last night. Something happened last night that changed his condition. What happened was his bowels perforated. That is that the intestines basically sprung a leak. Now what is normally inside the intestines went all over inside of his abdomen. First of all, that is horribly painful and usually when it happens to people they can tell you the second that it happens because it’s like "my belly is hurting" and then bang! "My belly is excruciating!" This makes you terribly, terribly sick. When I got to him this morning, when you had just left, he was in shock. Shock means that his blood pressure wasn’t high enough to work his kidneys and what we had to do was, we had to reverse that. We had to get medications into him, mostly that means antibiotics and a lot of IV fluid and he wasn’t even in condition to go to the operating room at that time. We had to get him good enough to get him to surgery. That took us a couple of hours. Now we’re finished with the surgery and frankly he’s a lot better now than he was two hours ago, but, that’s a far cry from saying he’s well. He still needs medicine to keep his blood pressure up, which means he’s still in shock, but his shock is much better. We know we can tell that because he’s now making urine and the acid amount in his body is much lower. The problem was that his small intestines for a distance of that far (he was showing us two feet distance with his hands) had died, and the valve (I’m assuming he’s using the term Valve to refer to the small intestines) was kinked up and knotted up in a ball and when the valve dies it blows open and I had to remove all of that. He can live without that and he didn’t lose enough valve that it will be a significant problem but when there is that much dead valve and that much contamination it is not safe to put the pipes back together again so what we do is we do what is called an Ileostomy. The valve comes out of his belly on a bag and if we get him through this, when we get him through this, a month, two months, three months from now, we’ll put it back together again, but it is not safe to do it now while he is so sick, ok. We’re not out of the woods; we need him to recover now. First of all we need his heart and lungs to tolerate the horrible insult that he has had, ok. We need him not to develop anymore infections. We need the wound to heal without an infection. We need him not to get pneumonia and we need his kidneys to continue to work. I would think that by tomorrow, I would hope to get him on the pressure medicine, the medicine that we’re using to keep up his blood pressure. I would think that just by washing him out and taking out the dead valve that we would have a big gain on him making his own blood, holding up his own blood pressure. This is all very complicated and I’m trying to keep it as baseline level as possible. So what we’re sure of is he’s terribly sick and he’s better than he was and I expect he will continue to get better, but, I need some luck here. I need some things to bounce in his favor. Now the question that is behind everybody’s mind is “why did this happen”? The short answer is, I don’t know. At the center of this area of bowel, where it was all drawn together, there was a very hard knot. It was harder than infection, it was harder than appendicitis or diverticulitis and I’m very concerned that there is going to be a cancer at the base of this. I don’t know for sure, I didn’t see it clearly enough if you follow what I am saying, ok. My way is to tell exactly what I know when I know it. There is something very hard in there; it caused the problem because the valve didn’t die on its own. It doesn’t quite work that way. Something else caused it to get bound up like that. We will know the answer to that by Tuesday or Wednesday; it will take that long to get it all taken out. That’s not going to change what I’ve got to do over the weekend. Right now, our first problem is getting him through the acute problem of having the bowel perforation. I can’t stress how big a problem that was because this had been that way over night. At least this didn’t just happen today. I’m thinking this happened yesterday.
Hopefully tomorrow we will be able to get him off of the breathing machine if he wakes up enough. The good news is he is not a smoker, doesn’t have heart disease, doesn’t have lung disease, and doesn’t have intrinsic kidney disease. All of those things are in his favor and he’s not a diabetic and he doesn’t have any other immune diseases that would keep him from recovering. So for all the good things, for all his strengths, I expect that he has a better than average chance for someone his age to bounce back from this, ok.
Mom: Are you checking that spot to see if it is cancer?
Dr.: Absolutely, absolutely
Mom: because they have been running tests on him
Dr.: I know that, I know that
Mom: it has just been terrible.
Teresa: why didn’t this show up in his colonoscopy?
Dr.: This isn’t in his colon; it wasn’t in his intestines either. It’s outside of the intestine and that’s why I’ve waited to see what it is. It was in the tissue next to the intestine pulling the intestine down to a point you wouldn’t find it on any colonoscopy or upper GI endoscopy. I promise, just a bluntly as I am, I’ll tell you when we know what that is. For the time being, my first control is we have a house on fire and my concern is not finding out who set the fire. My first concern is putting out the fire. We have gone a long way, now I need to make sure there are no ashes, if that all makes sense for an analogy. So you can visit with him, ok, but don’t expect him to know you are there till tomorrow. Right now I would just assume let him rest, but at the same time he is going to tell you that he feels better than when he came into the hospital. Washing that stuff out, getting the dead valve out, dead valve is very, very painful, he should feel better. So I believe in prayer, go ahead light your candles and say your prayers and I will be in everyday to see him. If you have any questions you tell the nurses to get in touch with me, otherwise I’m through with the procedure, ok?
Apparently I asked the doctor about the mass and this was his response:
It wasn’t a very big mass at all. It was like an acorn, but I don’t know what it is yet, and I don’t know where it came from. I don’t believe it started there that’s the other thing. So when I know more I will tell you, and in the meantime I have every reason to expect we will get him better, but we need nothing to go wrong, ok? The lower intestines, the part you examine with the colonoscopy, was all fine. It was the small valve, and we have about 20 to 25 feet of small valve, so he won’t miss that. He’ll probably feel better now than he has for months. Alright now, he’s not out of the woods yet, no celebrating yet.
Monday, December 28, 2009
Unwinding
We all went to grandma's 80th birthday party in Kinston. I remember I hadn't seen any of dad's side of the family in years, and dad had called me earlier that week and I didn't want to go. Dad had such a hard time that week and a bad day on Friday that he decided he wasn't going to go himself. I got up early that Saturday morning and called dad and asked him how he was and he said he was feeling a little better. I told him I wanted to go, and he perked up and we all went. Thank God we went... That was the last time he got to see his family and interact with them without being bedridden... None of use knew that he would be leaving us just a short 6-7 months later...
Dad started having serious problems with his digestive system back in February. He would feel fine for a few weeks and then suddenly, about an hour or so after eating, he'd be in pain. He's told me many times what it was like, but I still can't describe it completely. He'd be in this condition for approximately three days. In that three day period, he'd eat nothing but white rice or something very bland, or nothing at all. Then the episode would be over. He'd have at least two good weeks, then it would hit him again. Dad thought that it was food causing the problem. I can see how he'd think that, especially since it was the lack thereof that seemed to bring each episode to an end. His family doctor was apparently convinced of that as well. He was prescribed Prilosec. The doctor thought it was something simple. So for a brief time dad had started adding items of food to a list of things he couldn't eat anymore. He kept taking the Prilosec. The list grew exponentially as the weeks dragged on. His ability to taste things had changed. Salty foods were saltier, and sugary foods didn't taste as sweet. He went from being someone who absolutely enjoyed food, to someone who was begrudgingly intimidated by it. He put up with this until this vicious cycle of pain became a weekly occurrence.
In early September a new dynamic was added to his routine of weekly pain cycles. Dad had started throwing up at the beginning of these three, to now, four day bouts of pain. His family doctor had stopped treating him with Prilosec and was now sending him to different specialists. He had many tests run, but no one could find anything conclusive as to what was happening to him. He had a colonoscopy which showed things as looking normal. He had a endoscopy which did show that he had a peculiar fold in his stomach, which led to him having an ultrasound done. It was at this point that his family doctor discovered that his liver was badly diseased, which led to a diagnosis of cirrhosis of the liver. I was dumbfounded, dad had never had a drink of alcohol a day in his life. Apparently you don't have to drink to have cirrhosis of the liver.
I started driving dad up to Raleigh to a gastroentologist in early October. He was referred by his family doctor. Toward the middle of October we took him to Wake med. for a liver biopsy. The doctor there told us that the top half of his liver had a large "ballooned" pocket of old blood in it. I'm assuming that was what caused the fold in his stomach. We were also told that there were a few cancer cells found, but it was made to sound like it wasn't that big of a concern. We made one last trip to the gastroentologist. It was to discuss in further detail what had been found during the liver biopsy. I waited out in the car, I just didn't have it in me to wait alone in the waiting room. When I saw mom and dad walking out of the office I drove up to the curb to help dad into the car. At this point my dad was a very frail and emaciated man. After we were all safely in and ready to go I took a moment to look in the rear view mirror at mom, she was crying. Dad was very stoic and very quiet. As we pulled out of the parking lot and entered onto the highway I finally asked dad what was found. He didn't want to tell me. The cancer they had found in his liver was further along than they had originally thought. We all folded inward with grief.
In early September a new dynamic was added to his routine of weekly pain cycles. Dad had started throwing up at the beginning of these three, to now, four day bouts of pain. His family doctor had stopped treating him with Prilosec and was now sending him to different specialists. He had many tests run, but no one could find anything conclusive as to what was happening to him. He had a colonoscopy which showed things as looking normal. He had a endoscopy which did show that he had a peculiar fold in his stomach, which led to him having an ultrasound done. It was at this point that his family doctor discovered that his liver was badly diseased, which led to a diagnosis of cirrhosis of the liver. I was dumbfounded, dad had never had a drink of alcohol a day in his life. Apparently you don't have to drink to have cirrhosis of the liver.
I started driving dad up to Raleigh to a gastroentologist in early October. He was referred by his family doctor. Toward the middle of October we took him to Wake med. for a liver biopsy. The doctor there told us that the top half of his liver had a large "ballooned" pocket of old blood in it. I'm assuming that was what caused the fold in his stomach. We were also told that there were a few cancer cells found, but it was made to sound like it wasn't that big of a concern. We made one last trip to the gastroentologist. It was to discuss in further detail what had been found during the liver biopsy. I waited out in the car, I just didn't have it in me to wait alone in the waiting room. When I saw mom and dad walking out of the office I drove up to the curb to help dad into the car. At this point my dad was a very frail and emaciated man. After we were all safely in and ready to go I took a moment to look in the rear view mirror at mom, she was crying. Dad was very stoic and very quiet. As we pulled out of the parking lot and entered onto the highway I finally asked dad what was found. He didn't want to tell me. The cancer they had found in his liver was further along than they had originally thought. We all folded inward with grief.
Sunday, December 27, 2009
The purpose of this blog.
Our Family.
This blog is about my father’s battle with Cancer. It is my hope that through this process I will become a stronger person. This blog will also be a way of helping us to all remember after dad is gone. I know that afterwards, as time goes by, we will start to remember things less and less. It will soon be a clouded memory, one that stands out, but one that has few defining images. Our feelings will be on the surface of our skin and we will, all as a family, drift through the process of watching dad pass as if it were a dream. When he does pass, and the days unfold beyond him, we will be awake and none of this will seem real. Dad will guide us in his own way, and I know that I will personally be receptive to any changes that this may create within me.
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