Jaime Rodriguez, Talks About Dying

Dr. von Gunten: Okay. I’m Dr. von Gunten, or Dr. Charles is easier.
Charles.

Dr. von Gunten: Tell me your name.
Jaime Rodriguez.

Dr. von Gunten: Jaime, we’re going to be talking, you and I. Do I have your permission to tape-record and to videotape this?
Yes, you do.

Dr. von Gunten: We’re going to use this for helping to teach others. We’re not going to use this to make money. It’s just for education.
That’s what it’s all about.

Dr. von Gunten: That’s what it’s all about. What I’m going to do is ask you about yourself and your illness, and what it’s meant to you. Okay? But I want you to know that, if you become uncomfortable, of course, you got your button you can push, but if this gets to be too much, I want you to say, “It’s enough,” and the people that brought you can take you right back to your bed up at the inpatient unit. Is that okay?
It’s fine. Fine.

Dr. von Gunten: Okay. And I noticed you have Dr. Sanchez with you, who is your personal doctor, and she will make sure that I don’t abuse you too much.
(chuckling)

Dr. von Gunten: Okay?
Thank you. Thank you, doctor.

Dr. von Gunten: So Jaime, tell me about your illness. How did you first get sick?
Good morning, everybody. (everybody) Good morning.

See, my experience was… See, almost everything I had, it was mine, I mean, certain ways, the family foundations… and all of a sudden, the world collapsed on me. And… I don’t know what to do.

Dr. von Gunten: Why did it collapse? What happened?
Because… my bones, they were so fragile that I keep with my [inaudible] we call them [inaudible]

Dr. von Gunten: Your bones were fragile?
Uh-huh, in my bones.

Dr. von Gunten: How did you find out your bones were fragile?
Because before I [inaudible] with a stepladder that was up to the second room, it’s the apartment of my son, and then I feel like the whole house collapsed on me.

Dr. von Gunten: So, you were on a ladder…
No, no I wasn’t on a ladder, I was on the floor.

Dr. von Gunten: You were on the floor?
Yes. And I keep just standing up right there, and all of a sudden, all this pain came on me.

Dr. von Gunten: So, all of a sudden, all this pain came…
All this pain, all this… I didn’t know what to do or where I was. And then, thanks to all of the effort all of you guys, every one of them, I’ll be able to recognize, and I start thinking. See, it doesn’t end right there.

Dr. von Gunten: So, take me back to when that pain was so bad, and you said it felt like the house…
Couldn’t even move.

Dr. von Gunten: You couldn’t move, because of the pain.
Because I can remember nothing, it’s just… And then, all of a sudden, every one of you came, one by one.

Dr. von Gunten: What went through your head when you had that terrible pain.
That there was nothing left.

Dr. von Gunten: Nothing left? Say more about that.. “Nothing left.”
Well, nothing left like… strength, family, hope that I can keep going with… the most precious thing on Earth, your family.

Dr. von Gunten: So that’s what went through your head? You were perfectly fine, working with your son…
Yeah, I was perfectly…

Dr. von Gunten: And this happened, and the things that went through your mind ̶ say that again.
That all of a sudden, I found out that I have nothing.

Dr. von Gunten: In a moment you felt like…
In a moment like that.

Dr. von Gunten: Was it because of the pain?
Because of the pain, because of… the whole…. the whole thing, I mean… It’s just… what Jaime was.

Dr. von Gunten: What Jaime was?
Yeah. It’s not here anymore (chuckles).

Dr. von Gunten: So, Jaime changed?
Jaime changed completely.

Dr. von Gunten: The way you describe it, Jaime changed in a moment.
In the moment, in one second or two seconds. So, like I say, thanks to all of you, every one of you, I know who I am, I know more or less what I want through the… through the end, whatever I can achieve, or you can guys can help me.

Dr. von Gunten: Tell me more about that. From what you describe, that you felt you lost everything, and now you’re smiling, and you’re saying you found yourself. I am very confused. Help me understand ̶ how did it happen?
Well, uh… I can… have a conversation with you.

Dr. von Gunten: Mm-hm.
And I can have a conversation with my kids.

Dr. von Gunten: Mm-hm.
The grandkids.

Dr. von Gunten: Mm-hm.
And all of you in the world right now.

Dr. von Gunten: Why do you think, why… What happened that you can have a conversation with me and your kids and the world.
Because before I couldn’t. I didn’t even know what I was talking about.

Dr. von Gunten: What was the difference? What happened?
The difference was something hurt my head or my heart. You know, those horrible things that can hurt any man, any woman, or anybody.

Dr. von Gunten: Sounds like your head and your heart are more important to you than your body.
Ahh… Everything comes together, Dr. Charles, everything comes together, and those… they lost completely hope. I told them not to, because this one little light somewhere you guys can help us achieve, if we put the effort.

Dr. von Gunten: If we put the effort?
Yes.

Dr. von Gunten: Who has to do most of the effort?
First of all, you guys because you know what you’re doing, what you guys are doing.

Dr. von Gunten: Well, we hope we know what we’re doing.
And the rest of the world. I keep saying, Charles, it’s easy for the governments, or federal government, or whatever to collect money to initiate all these programs, and then, the guys that achieve these programs. Those are that were important.

Dr. von Gunten: You’re saying… Go ahead.
These guys can grab ten dollars and put five in their pockets….(Charles laughs) and five in the system. And you guys put… you collect ten dollars, you put ten dollars in there. It’s great!

Dr. von Gunten: So, you think that the healthcare people that have helped you are the ones that changed you from feeling like you’ve lost everything…
That’s right.

Dr. von Gunten: Wow.
Because I’ve seen such marvelous, such wonderful things.

Dr. von Gunten: I want you to tell me more about what you understand from your doctors about what’s wrong with you, why you had the pain.
Because of the bone cancer.

Dr. von Gunten: Tell me more about that ̶ what you understand about the cancer.
It was fragiler, and fragiler, and fragiler, and fragiler, until the point where I started feeling the other way around. See. Before I couldn’t even move my hands.

Dr. von Gunten: You couldn’t move your hands before?
No.

Dr. von Gunten: Why, why couldn’t you move your hands?
Because… I really can’t answer that because I’m not a doctor… Because it wasn’t the right medicine.

Dr. von Gunten: Ah..
It wasn’t the right treatment; it wasn’t the right therapy or whatever it is.

Dr. von Gunten: Okay.
So, I could move.

Dr. von Gunten: So, the cancer made it so bad, you couldn’t move your hands.
Before I was like this, and only two months ago.

Dr. von Gunten: Only two months ago. So, the cancer sounds like it was pretty bad, it spread throughout your whole body?
It was bad. It is bad, It was bad. It is bad.

Dr. von Gunten: Right, it is bad. Thank you for correcting me. What’s it like to talk to a doctor about your cancer?
It is… Before I was afraid, I was mad, I was, you know. Not anymore.

Dr. von Gunten: And not anymore? Why?
Because I have a little knowledge what was going on, what is. What I can, and what we can do.

Dr. von Gunten: Uh-huh. So that helped you when we talked about…
It helped me, what we can do. It helped me a lot. Helped me a lot, Dr. Charles.

Dr. von Gunten: So, the cancer is throughout your body and in your bones, and I understand that’s why you’ve had so much pain, because the cancer is in your bones.
Yes.

Dr. von Gunten: Has it broken your bones?
No, it was a fisura.

Dr. von Gunten: A fisura. So, a fracture in the bone.
A fracture in the bone. Because when I… had a fisura in this one I didn’t move it anymore. I just keep it like that.

Dr. von Gunten: So, you couldn’t move your arm because of the fracture?
Didn’t want to move.

Dr. von Gunten: You didn’t want to?
I just… And I didn’t when I was in ambulance. Bad! I thought I was dying. And I tried to put the ladder, because I was tired. I just heard [in a high voice] “click.” I thought, “Oh, my God!.” My wife was sitting right there. They say, “Ahh, what happened to your husband?”

What happened? Because I was tired, I’m not thinking.

Dr. von Gunten: So, you moved just a tiny bit?
Just a tiny bit, like that.

Dr. von Gunten: And you heard the click, and that was the fracture?
It was a fracture.

Dr. von Gunten: So, no… your bones were that brittle, are that brittle?
Uh-huh.

Dr. von Gunten: They are that brittle because of the cancer. What does that mean to you that the cancer is that bad?
Well… I was treated, you know. So, the beginning. So I little bit know. They didn’t give me… care that you guys given us here, because they probably don’t have enough personnel. They don’t have enough facilities like you have here, and the effort. You guys put everything in.

Dr. von Gunten: I understand, you’re from Mexico originally. Is that right?
I was born in a little village.

Dr. von Gunten: Uh huh.
The name is San José de Mesillas, Sombrerete, Zacatecas.

Dr. von Gunten: In Zacatecas?
In 1941. And then, I moved to California in 1960. And I’ve been here since then.

Dr. von Gunten: Since 1960.
Fifty years.

Dr. von Gunten: Oh, my word! 1960 to now is 50 years. (chuckling). I think of it is not very long ago.
(Jaime laughs)

Dr. von Gunten: What kind of work have you done?
Well, first I was… I was on the flour thing all the time, until all these things started collapsing. And then, I talked to my boss, “Can’t help you anymore.”

Dr. von Gunten: So, he let you go.
He let me go, and I didn’t want to stay because I wasn’t going do the things I can do, you know, when I was working. So, I say, “I don’t think I’ll be able to serve you.”

Dr. von Gunten: You were working in the flour industry?
As a foreman, yes.

Dr. von Gunten: As a foreman. So, you must have been a very strong guy?
Well, I was. (chuckling) And then, all of a sudden just, you know… And I thought that we have everything in order, and then all of a sudden, we have nothing in order. There’s more…

Dr. von Gunten: So, when you were working, you thought you had everything in order?
Yes.

Dr. von Gunten: And then you got sick.
I’m sick and I don’t have nothing.

Dr. von Gunten: And you “don’t have nothing.” That’s a shock.
It is.

Dr. von Gunten: So how did you deal with the shock?
Well, talk to my wife.

Dr. von Gunten: Oh, wives are good for that. Tell me about your wife.
Well, we’ve been married 42 years.

Dr. von Gunten: Uh-huh.
And we have three kids . One is 40, and my daughter is 38.

Dr. von Gunten: Uh-huh.
And my baby is 35. (laughing) And I have three grandkids, one is 15 one girl is 12, and one little Chiquita is four.

Dr. von Gunten: Ahh? Your face lights up when you talk about your grandchildren, more than when you talk about your cancer. Why is that?
Oh, yeah, well. How can I put it? I guess I love them more than the hurt. (laughter)

Dr. von Gunten: You love them more than Earth? You’re here talking to a bunch of doctors who think bodies, and medicine, and CAT scans are the most important things.
Well, like I say, she put the effort, I mean, there’s no question about it. No question that family and grandchildren are more important… In the heart, family… Well, there’s a couple, you know, three or four things together.

Dr. von Gunten: There or four things, tell me the three or four things that are most important to you.
Cement… Cement. Family ties, Yeah, and then… the important when put the other one ̶ love. Love. Love is most important.

Dr. von Gunten: Uh-huh. Tell me the role that faith plays in your life.
Like what?

Dr. von Gunten: For many people, faith plays a role in coping with illness. I wonder if that’s true for you?
I talked to a few people, after that, a lot of people are mad, a lot of people… I know that you get frustrated in the first two weeks, three weeks, or whatever, but you cannot stay there forever.

Dr. von Gunten: So, were you mad the first two or three weeks after ̶ this happened at home?
No, well, the answer can wait because I semi-agree with them. And I started thinking… See, I don’t think this is the right thing to do.

Dr. von Gunten: To be mad.
To be mad…because it’s nobody’s fault.

Dr. von Gunten: Nobody’s fault. Because many people think that God causes you to have cancer, God causes that. What do you think about that?
I don’t think so.

Dr. von Gunten: You don’t. So how do you explain the cancer?
It’s an illness.

Dr. von Gunten: An illness.
It’s as simple as that.

Dr. von Gunten: Uh-huh. So, what are you expecting now? What are you hoping for?
Well, to tell you the truth, the best we can do together.

Dr. von Gunten: Say more, “The best we can do together.”
Well… the effort you’ve been putting, I think I’m going to get little… little better, little, you know. And if I… If we keep doing what we’re doing, well, it’ll be – slowly, but, you know, little by little.

Dr. von Gunten: Little by little better.
Or little by little backward or forward, either way.

Dr. von Gunten: Either way. So the future could be… You’re hoping it’ll be a little better, but, you know, it might be a little worse.
That is what I hope.

Dr. von Gunten: Okay. Now, many people with your kind of cancer think about dying. Do you ever think about dying?
That’s too serious. Everybody, we all going to die. There’s no question about it. Okay?

Dr. von Gunten: Uh-huh.
So, there is no escape.

Dr. von Gunten: Uh-huh.
When, I don’t know.

Dr. von Gunten: Right.
And just wait.

Dr. von Gunten: Uh-huh.
We keep doing what we’re doing and… I think, like I said, think again, every one of you, here, with their help, and that’s all I can say. I’m thanking everybody from the bottom of my heart.

Dr. von Gunten: It sounds like what helps you is knowing that everybody is doing their best ̶ to try and help you.
Yes, yes, yes.

Dr. von Gunten: And when the time comes for you to die, well, that’s it.
That’s it. Yeah.

Dr. von Gunten: Does your family feel that way?
Yes.

Dr. von Gunten: They do? What are you most worried about with your family? What worries are most on your mind about your family?
Well, Dr. Charles, I think… it’s the most fear of me…economics.

Dr. von Gunten: Economics. So, the money.
Money.

Dr. von Gunten: So, you’re afraid for the money for them.
For them.

Dr. von Gunten: Yeah. Will you tell us more about what you’re afraid of or what’s on your mind anyway?
Well… There’re so many things, that we can talk all morning and we will never finish, because we get here, we get there, we get there, we get there. But… basics. You know, my wife ̶ she is like… illness. I don’t know if I can afford whatever, if I can… if I can stand her like sick. Then I really get sick.

Dr. von Gunten: Ah, so if there’s not enough money to take care of you, and you worried about enough money to take care of her?
Not to take care of me, just take care the little things, you know, there’s family.

Dr. von Gunten: So, it sounds like you’ve been very proud that you take care of her.
Yes.

Dr. von Gunten: You bring in the money and take care of her…
Yes.

Dr. von Gunten: And now, you can’t bring in the money anymore.
No.

Dr. von Gunten: Do you think she’ll be poor?
No, not really. But it’ll be… won’t be… you know, any man, any husband, any… Like you, doctor, say, you collapse right now, no matter how much money you have…

Dr. von Gunten: That’s right. It’s going to go. How did you come to this philosophy?
Well, through life and, see, all this… change, you know, the human race, like depressions, like going back to Mexico, like going back to the United States, like my grandpa. Back and forth. Now is good, let’s go. Not again. Yeah.

Dr. von Gunten: So, it sounds like your whole life, all the things you’ve encountered, including all the things your father encountered ̶ makes you more philosophical.
Well, when you… Youngster, you have to obey parents to achieve something in life, otherwise, you go through breezy roles in life, and this, so you settle too, so… This is my real philosophy.

Dr. von Gunten: You feel like you have achieved what you want in your life?
Mmm. Yes and no.

Dr. von Gunten: Say more.
Well, because I was trying to achieve, and all of a sudden everything collapsed.

Dr. von Gunten: Some people might feel cheated.
Well, it’s not really cheated, I think, there’s some other factors and things that I hope, whoever see, see us or heard us this morning changes attitudes of life.

Dr. von Gunten: Say that again, I didn’t quite understand you.
[speaking Spanish] [conversation in Spanish] (woman translating) People [speaking Spanish] (translating) People have the possibility of putting this phrase in practice.

Dr. von Gunten: People have the possibility of putting this phrase in practice?
Yes. Because, if you go to a negative side, then you not going to achieve nothing. If you go to the positive side, then you’re going to do something. Like we say, Charles, “Better good when you’re going to achieve something for your family.”

Dr. von Gunten: Some people would look at you and say you have all this cancer, you have all this pain, how could you have a positive frame of mind?
(chuckles) Well, if you see all these young faces, they help you, they’re going to help more than yourself… Sitting down in one corner over there, crying.

Dr. von Gunten: So, does seeing the healthcare professionals around you, is that what helps you? Is that what you are saying?
It will help me a lot.

Dr. von Gunten: It helps you a lot? So instead of them staying in a corner and being sad for you, you want them to be… trying to help you?
Trying to help, and if I can help them… it will be my pleasure.

Dr. von Gunten: And if you can help…So, it’s two ways: they help you– you try to help them.
Uh-huh.

Dr. von Gunten: What would you say to the doctor who says, “But Mr. Rodriguez has cancer. The cancer won’t get better. I have nothing to do. I have nothing to offer.”
Okay. I pose you the same question, you answer me then, then and I give you my answer.

Dr. von Gunten: I would say to that doctor, “There’s more to do than just taking care of the cancer, you have to take care of the patient.”
That is exactly what I keep saying.

Dr. von Gunten: Of all those people who help you by taking care of you, what’s the most important thing they need to know about you as a person?
Well, that you will see my… way of thinking.

Dr. von Gunten: To know your way of thinking. Okay. So, more important than knowing your cancer, more important than knowing your family, for you, it’s knowing your way of thinking.
Okay.

Dr. von Gunten: Well, we’ve been talking now for about a half-hour.
Uh-huh.

Dr. von Gunten: Already…You have an opportunity; you have all of these doctors all around. All of them are trying to help patients like you in their own countries. They come from Africa, from India, from across Asia, from Europe, from North America, from South America ̶ they’re all here. What do you want them to know from you as a patient having this serious disease?
To pick up all of this effort, all this dedication, all this… whatever they can take and use it for their people.

Dr. von Gunten: Use it for their people.
I was… I wish them very, very good luck.

Dr. von Gunten: Okay. I want to come back to the importance of… you’ve had a lot of pain.
Yes.

Dr. von Gunten: Say something about the importance of pain medicine and pain management.
Well, Doctor… Nobody more than you guys here knows about pain and knows about all these things.

Dr. von Gunten: Well, we don’t ever experience it.
Yeah.

Dr. von Gunten: You’re the one that has it.
It is together, like I say, with effort, with dedication, with love.

Dr. von Gunten: Love. So, we need love to treat pain?
No, we need the medicine. (laughter) (Jaime chuckles) With love, you don’t treat. Okay?

Dr. von Gunten: Okay. As many of them work in countries where, you were talking about governments before, they don’t have the same pain medicines that we have in the United States.
No, they don’t.

Dr. von Gunten: So, if you were to talk to their governments, what would you say about pain medicines?
In plain English?

Dr. von Gunten) In plain English and in plain Spanish, both.
(chuckles) [speaking Spanish] (laughter)

Dr. von Gunten: Okay, and in English?
Don’t be a thief.

Dr. von Gunten: Don’t be a…?
(translator) Thief.

Dr. von Gunten: Don’t be a thief? Oh, that was your point before about the governments that take ten dollars, and they put five in their pocket, and then spend five. And you’re saying: “Spend the money on the medicine.”
Spend five, and then put five in their pockets.

Dr. von Gunten: Yeah. You’re saying they better spend the money on the pain medicine.
[inaudible ] All this, want you.

Dr. von Gunten: I’m concerned that I’m making you tired. Is that true?
[speaking Spanish] (translator) The moment is worth it.

Dr. von Gunten: The moment is worth it. Well, I want to express on behalf of everyone here how grateful we are, because everyone let me tell them that last night when I came to your bedside to ask if you would come down here, your nurses thought that was a terrible idea, because every time you move, your bones rub against each other, and you have terrible pain. And you said, “Yes, I’ll do it, if you can make sure the pain is under control.”
(Jaime laughs)

Dr. von Gunten: So how did we do?
You’re doing great! You guys are doing great, all of you.

Dr. von Gunten: Okay. One of the reasons that I asked you to come here… Everyone here is involved in trying to make the world a better place with better pain control and better treatment for people like you, whether they’re in Africa, or Asia, or South America. We’re trying to illustrate for them the power of a patient voice, even if you’re still very sick. So let me ask them what is it like hearing these kind… because you can tell these stories all the time. What is it like hearing this story from a real patient?
(voice) Powerful.

Dr. von Gunten: Powerful. Do you agree with him? Can you hear that? That even though they all are doctors, they’ve all seen patients like you, hearing it from your lips, makes the message different. So, you’ve given us a very big gift today.
I wish I can give you more. I don’t have it.

Dr. von Gunten: You’ve given a lot.
Thank you.

Dr. von Gunten: And I’m deeply grateful to you.
Thank you.

Dr. von Gunten: I’m inclined to ask your attendants to take you back to your much more comfortable bed than this gurney. Is that okay?
Thank you, I appreciate that.

Dr. von Gunten: Okay. Mayra, are you okay?
(Mayra) Yeah.

Dr. von Gunten: All right. Thank you very much.
Thank you. Thanks, everybody!
(applause)