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.