Hair loss Treatment Center

PARTICIPANTS Denice Economou, RN, MN, AOCN Southern California Cancer Pain Initiative Suzanne Bliss Executive Director, LRF

Slide #2
The important thing to remember as we look at this introduction, as you can see, we're going through a lot of things. There will be a piece on actual symptom management, where I've kind of chosen some symptoms to look at, but certainly if there's ones that you are dealing with, let me know and we'll try to give you some ideas on how you might handle that. And then looking at the impact of cancer on the family, on improving the mental and physical health of the caregiver, because that's really what we're here for.

Slide #3
Also, to remind you: This session is scheduled for two hours, so if you get tired of me, I totally understand. Take up, stand up, sit down. But hopefully, we can work it out and get through this together, because that's really the most important way to do it.
Again, introduction to family caregiver overview. And what's norm for families today, we're different than we used to be. Early hospital discharges really increase the demands on the caregiver. You know, in the old days and I still, I have a mother who's 75, my father's 82 and they really believe that, first of all, Medicare pays for everything. Because they have Medicare, you know, my dad fought in World War II; he has Medicare. And it's very difficult for me to help them understand that's not true, that's not what happens.
Or now, when things get a little more difficult, they want to put her in the hospital. "Come on, let's just put her in the hospital; she's not eating." But we know that that's not an option any more; people don't put you in the hospital, because you don't eat. They bring things to you in your home. Which is wonderful, but that doesn't mean that someone's there 24 hours a day to help, and that's the key. That caregiver, whoever or however old that person is -- is supposed to be able to take care of this. So remember that; we all need to think about that and you're living it. You know the reality of that.
The burden can have a negative effect on quality of life for all of us involved -- the caregiver, the patient, the family members, everybody, so we need to make it the best that we can and that's our goal. Quality of life is the key, that's the answer, so let's think about what we can do to make it better.

Slide #4
How can we reduce the burden on the caregiver? And that's hard, because a lot of us feel really responsible for that loved one, for our patient. We want to do the best we can do and we want to be there for them. But the reality is we are only human, you can only do so much, you are suffering from sleep deprivation, just as much as the next person and especially that caregiver and her and your loved one, so remember that; you can't function without sleep. You need a break as well and sometimes it's hard for caregivers to feel that they can do that, that they can walk away for an afternoon and do something else. It's difficult to do.
Find help, time management. Probably one of the other biggest problems is how do you manage everything? Because many times, the caregiver is also working. So we need to find a way to balance that in a way that everything can happen in the best way.

Slide #5
Types of caregivers. There are different types of caregivers, different types of adult learners. So the way that we pick up information or are able to take care of our loved ones is different. So we need to think about what works for us, we're all different. And some people can manage things and other people manage in a different way; it may not seem like the right way for all of us. And that we must realize that, as a caregiver, there is a special role in that and that it is real and it isn't just because you happen to be married to someone or partnered with someone who's ill. You learn that it's important and you need to take that role on, because you have to. None of us really chose this role, we get put in there and that our job, our thing to do. And there are rewards and stresses and so we need to remember to reward ourselves, our loved ones and our families as well.

Slide #6
Understanding cancer. This group is a --you guys know it better than anybody. This is just a really basic understanding for caregivers that may not have ever really experienced cancer in the way that you guys have and really your way of looking through and understanding this disease and the peace that your family or loved one's going through.
Single cell. People, it's still a single cell. Goes awry, oncogenes, suppressor genes turn on, turn off and we get abnormal growth.

Slide #7
We know that there are known or suspected carcinogens in our environment, in ourselves. Chemical agents that we're exposed to, physical factors, dietary factors and the common myths. You know, that if you go out with wet hair, you'll have a cold or you'll get pneumonia. Those things that are -- my mom used to always say, "Well, you have a cold in your shoulder." And as a kid, I knew what that meant. As a nurse, I have to kind of think, "What does she mean by that? What is a cold in your shoulder?" but now I understand. So there are a lot of things that work against us and for us that we need to think about. So help -- remember that stuff.

Slide #8
Genetics and cancer. Familial cancers. We know now that there are other cancers, multiple myeloma has now been looked at as being a familial cancer, which it wasn't in the past. And that really came from experiencing -- from oncologists, like Dr. Berenson and Dr. Drury at Cedars that saw families with multiple myeloma and would see that the spouse came in later or someone else in the family and they started to start to put those statistics together to look at that. We know a lot about GI or colon cancer. Breast cancer, certainly, and ovarian cancer. So we look at these things; those factors are important.
And they also may be linked to environmental factors, so depending where our families come from. The difference in families today is we don't all live in the same area like we used to, which makes caregiving even more difficult. Because in the old days when we had extended families and grandma and mom and all the kids lived within reach of one another, it was a little easier to do this. Now it's difficult.
Or even me considering myself the primary caregiver and my mother has moved back down to her home in Palm Desert; that's three hours away from me, very difficult. So we need to think about, as caregivers, what we are expected to do and how we're going to do it from a three-hour distance. It's not easy, always.

Slide #9
Symptom management. This is going to be more specific ideas or ways to manage some symptoms. But I really need you to let me know if you have other things that are going on; please feel free to raise your hand or speak out to me, keep it open and interactive.

Slide #10
Start with anemia, because in some of the standard treatments -- and certainly CHOP -- we know that our families, our loved ones experience anemia, meaning a low blood count, right? That's a chemotherapy side effect, that's a radiation side effect and that's a biologic side effect for some biologicals. Interferon, things like that can really cause this.
So you look at anemia; it's a decrease in the red blood cell count.

Slide #11
Now as we think about pathophysiology, what does that mean? Well, severe anemia can really affect your cardiovascular system, the respiratory system and the oxygen requirements of an individual. Because if you don't have enough blood cells to carry oxygen around, you're going to be fatigued, you're going to be short of breath, you're going to have all kinds of symptoms.

Slide #12
I put in this slide, which is one of the nursing slides. But I wanted you to understand what erythropoiesis is. Erythropoiesis is the ability to make red blood cells. So what's happening in any of us that experience anemia, what happens? The kidney senses the hypoxia, so when your blood level oxygen is low, it feeds into the kidney and the kidney -- as it's running blood through -- says, "Hey, we're low here, we got to let out some erythropoietin, so we can make red blood cells."
So they send out the signal to the bone marrow and the bone marrow says, "Okay, let's put out these cells that will become red blood cells." So they let out the new red blood cells. That sends a sensation back to the kidneys, saying, "Hey, we got enough oxygen now; you can turn that off." So that's the goal, that's what's happening normally. And then our kidney decreases the erythropoietin production.
Well, that's what should happen normally and in some patients, it does. But in many of our cancer patients, it doesn't. They can't produce erythropoietin and it may be different reasons why.

Slide #13
But we know that the signs and symptoms of anemia are broad and I put these up here, because sometimes, beyond feeling just bone tired and like you can't go to bed or wake up rested which many of you will also experience, is difficulty breathing after exercise.
Shortness of breath is probably one of the first things we see and rapid, irregular heartbeat. They may have an increased respiratory rate, because they're breathing rapidly to compensate for that and they're not very tolerant to cold. They'll always say, "I'm freezing, I'm freezing."
And anorexia, they don't have an appetite. So think about, when you're anemic, you don't have an appetite, you may look pale, dizziness, headaches -- because of the low blood count and also decreased attention or cognition. Inability to kind of think -- you know, you just don't think as clearly when you're anemic. Menstrual problems, male impotence, angina, they may have chest pain associated. So irritability. All of these things that I say we all feel from fatigue as well. So that's part of it.

Slide #14
Treatment options. Well, we can have transfusions, erythropoietin and certainly you have your display on Procrit in there. And for many of you, that has really helped sustain or maintain blood levels for your loved ones. Diet support, relaxation, visualization, we'll look at some other things.

Slide #15
Fatigue is probably one of the biggest side effects we manage for all of us, both sides. And it's from either the cancer itself, from the side effects of the cancer treatments, from anemia, from nausea and vomiting. From physiologic disturbances, looking at electrolyte imbalances, sleep disturbances. Psychosocial issues; we know that depression and anxiety are very fatiguing. We know that unrelieved pain is very fatiguing. And polypharmacy, and sometimes it's something that simple. And as the caregiver, you're the ones that kind of look at the medicines and kind of understand what's going on. And I'll tell you the truth: I did it myself and it was amazing to me.
That as I was taking care of my mother and worrying about her dehydration, really worried about her dehydration. At one point -- my husband's a physician -- I had him go to the ER and steal IV bags so that I could hang them on my mom from the bookcase, because I -- she was dehydrated. I thought, "She's going to die of dehydration; we can't allow this." Had him steal these things, and meanwhile, as I'm giving her medicines, I realize that I'm giving her a water pill that's she's taken forever. It's like, what was I thinking? So sometimes you really, you're so tired and you're so busy taking care of things, that you don't always think to step back and really look at, "Okay, what are we taking here?"
So in some patients that really need to watch what your side effects are and manage those medicines. And that's not always easy for us -- even as a nurse -- caregiver to do and it may need just to talk to someone else. And I found for me just giving another nurse friend, a colleague, a call and say, "Hey, what do you think of this? What can I do?" And for all caregivers, you call a friend or call the doctor, or call the nurse in the office, because that's usually the one that can really help you to kind of understand, "Am I doing something here that we could change this side effect if we weren't giving one of these meds?" So think about polypharmacy.

Slide #16
We probably all know signs of impending fatigue: Tired eyes, stiff shoulders, decreased lack of energy, inability to concentrate, again irritability, anxiety, nervousness and impatience. And you know what? We do that too as caregivers. So remember that. When you're feeling impatient, when you're feeling really irritable, that's a normal response to being fatigued. And if you don't take care of yourself, then you're not going to have the interaction with your loved one that you would like.
Now, for many of you, you're not seeing that kind of end stage fear that death is coming soon, but you're dealing with day-to-day things, which is even more important that we don't allow yourself to get fatigued and irritable, because you really impact that communication and that relationship with that person that you care a lot about. So we need to remember to take care of ourselves and it's difficult to do in that day-to-day -- especially if you've got children involved, you're working and you're taking care of that loved one.
And sometimes you feel frustrated, thinking, "Don't they understand what I'm doing?" And you know what? If they're in a place where they're fatigued and tired and going through things, maybe they don't understand it quite as much as you do, because they're too exhausted to. They're too sick to think about that. So that's our role, so that's why it's important that we kind of always stay one step ahead and think about what we're doing.

Slide #17
Discuss the fatigue with a doctor or nurse. Discuss anemia, hemoglobin levels. Most of us know that when you're taking of your loved one, you know what blood counts mean and you're looking at them. And look at how you can treat it, especially if it's related to chemotherapy. Can we prevent it? And nowadays, in California in particular, our Medicare guidelines are allowing us to treat with Procrit sooner than we used to.

Slide #18
So we don't let blood counts drop to the levels they used to drop to, which really lead to fatigue, so that's exciting. But you need to watch it and it usually comes from somebody saying, "Do we have to let this keep going? Let's treat now." So think about that.
Maintaining a balance of diet. We know that folic acid, iron, important things -- B12 -- are important things to help you build your blood count. So as we look at diet, that's important. Think about what you're eating, or what you're loved ones are eating, because we all need to think about this.
And water, dehydration is very fatiguing and sometimes it's something that simple and just hydrating somebody to give them better quality of life.

Slide#19
Restoring attention is important, because this is a way to think about how you can restore that attention, so you can focus. So you can think about whether or not you're giving a water pill to your dehydrated loved one. So think about those things.
You want to walk, you want to sit outdoors. Certainly at work, I find that when everyone gets kind of where they can't think any more and I think most of us do this, we have to walk away from that situation. You have to go outside, take a deep breath, sit down and just let your mind wander a little bit and that's the key. That's how you can restore attention and think about what else can I be thinking about here, I have to kind of rethink, regroup. And so think about that; watching birds or wildlife.
And it's true for our loved ones as well. So it's important to remember to keep those things in your life. Fascination, sense of being away, sense of compatibility. You need to really think about those things that you're developing to help improve your ability to care for your loved one.

Slide #20
Sleep disturbances; really a frequent problem in cancer patients and we all may be experiencing it as well. Difficulty falling asleep, inability to stay asleep or waking up early.

Slide #21
We can look at how to manage that by establishing a routine and it's difficult to do, but it's important to really keeping sleep going well is to establish that routine. You go to bed at the same time and you get up at the same time; today's a little confusing, but you can do it and that's the key to helping to maintain that sleep-wake cycle so that you prevent some of the other problems you may have.
Exercise daily. That's important for all of us, because we know in many cancers, we know that exercise makes a difference, certainly in breast cancer. And in quality of life studies, we're seeing many more studies showing that exercise is important. So for all of us to improve our quality of life, help your loved one and you, too. Just take a walk, a short walk, it doesn't have to be around the block. Even if it's just to the doorway or outside so you can see outside and just get to the street and back, that's important. That's something that really will help.
And looking at underlying anxiety, fear and depression. What's going on? Are those things keeping us awake? Keeping all of us awake. And short-term intermittent medications, if indicated. The reason that we don't really promote a lot of medication to sleep is because over time your body gets used to it and you really can foul up that sleep-wake cycle. So we're careful about medicating for that.

Slide #22
But there are many medications that are very helpful, so let me do say that medications like Halcion can be very helpful to get a patient who cannot sleep to get sleepy so they fall asleep and stay asleep.
Think about the light in the room where you're sleeping, all those things. And you remember to do that, too. Find a way to really clear out your room so you can sleep when you need to sleep.
Fever. If we look at fever, it's an important part of chemotherapy management. Certainly it's something that we all as caregivers are most focused on, because when our loved one gets a fever, we know we need to act. We need to do something. So think about that. What's the cause of a fever? It can be infection, it can be the tumor itself in certain cancers -- we do see tumor fever. Dehydration causes a fever, constipation can cause a fever and certain medications may cause you to have a heated response to it. So you want to think about what's going on and what do we do?

Slide #23
If you're on active treatment, you're going to call the physician. And certainly, we always said over 102 and now we're really looking at 101, 101.5; you let that physician know that there's a fever going on. We want to think about what can we do to help that patient feel better. Let the doctor know.
They don't use non-steroidals or Tylenol unless you've been instructed to by the physician, and that's a key point, because you'll mask that fever. So you'll say, "Well, they're not running a fever," but they're also getting Tylenol every four hours. So we don't know that they're not running a fever. So until the physician's aware and dose what he needs to do to make sure that fever -- we can fix the cause, we want to not cover it up, so let them know.
Any questions? Any specific responses? No, okay.

Slide #24
If the patient is not in active patient, and again, this is for different phases of treatment then you're going to want to keep the patient comfortable. Going to think about sponge baths -- and please remember that ice water, that's another myth. That ice water, you know, we put ice packs under everybody's -- in their groins, under their arms, behind their necks to decrease the fever. And that in fact doesn't work as well as you might think. Because what you're doing is you're slowing the circulation down. We want that circulation to speed up, so tepid, kind of tepid is better, not ice. So that you can get a patient's blood to keep flowing and cool off as it goes. So think about that.
And increase fluids as best you can. And for some patients, if they're really ill, it's difficult to get patients to drink water, so think about that.

Slide 25
Pain is another problem that not, thankfully, not a whole lot of lymphoma experience. Do many of you in here have loved ones who are experiencing pain? Not a one, isn't that wonderful? Oh, a couple. See, we always have to -- thank you.
I have to talk about this, because it's important that everyone, everyone understand these myths and things that affect pain management so that, God forbid, you ever need it, you know what you're going to look for. Because when your loved one's experiencing pain, you don't want to wait around trying to get through these myths. You want people to react.
Now in our state and I'm on the board of the Southern California Cancer Pain Initiative, which is another grass-roots initiative that's really grown in eight years. Our goal is to get rid of triplicates in our state, because if you need a strong pain medicine, you need to have a three-part triplicate, a prescription form in California in order to get that medicine. And if your physician doesn't write triplicates, then you can't get them from your physician.
In our state, we also have a dying patient protocol that allows patients to get pain medicine with a regular prescription with a special exempt code on it. But if you take it to a pharmacist who doesn't recognize that exempt code, you can't get that prescription filled either. So you need to understand what's going on in your state and how it is. If you needed pain medicine, how you get it when you need it. So those kind of things are important.
Remember that patients are afraid of cancer pain. Our patients, everyone who's ever diagnosed with cancer is afraid that what that means is end stage is going to be unrelieved pain. So we need to help patients understand that that's not the case; that's not what's necessarily going to happen. And in our state in particular, that may hopefully never happen.

Slide #26
The other key to remember for all of us is even as much as we know our loved one and as much as we think we know who's in pain and who's not, we don't. The studies show that we are poor guessers of patients in pain, or anyone's pain level, so think about it.
Margot McCaffrey was the first nursing researcher to say, "Pain is whatever the experiencing person says it is, existing whenever he or she says it does." And that's hard for some us, and you can imagine what physicians did with that years ago. "You're going to ask the patient? How can the patient know that they're in pain?"
Well, the key is the patient does know what they're in pain is and we have no way of knowing. So remember that. And even for us, because I've seen it in our house. My dad'll say, "Oh, she's not in pain." And then I say, "Mom, you hurtin'?" "Yeah, I am." Because she doesn't want to tell him, she doesn't want to tell her loved one or the caregiver what's going on, because she doesn't want to cover it up or make him feel like he's not doing a good job. So we need to help our loved ones remember, "You can tell me. I'm here to be your advocate, I'm trying to help you feel better." And quality of life is the key, so we need to remember to help them, so that they'll communicate with that.

Slide #27
Fear of addiction, fear of dependence, fear of tolerance to the medicines, that's really the key for all of us. Because all of us are sitting here saying, "I've got enough problems. I'm taking care of my loved one, and now I'm going to make him into an addict? No, I can't deal with that." So we need to understand that the statistics on addiction are very low, very low and that patients who use pain medicine for pain are not going to become addicted; less than 1% are the statistics.
Now if a patient has a history of drug or alcohol abuse, yes, addiction is different. 45% chance they're going to abuse the meds, at that point. But the key is following up; that's the patient or the loved one that you're careful with. You don't leave that bottle of pills where they can grab it and you make sure that they talk to you about what's going on. If dosages need to change, why? We need to understand why.
So help patients and families to remember that. Don't be afraid of addiction, it's not a fear. We're looking at quality of life; it's not something we need to be afraid of.
Physical dependence is a physiologic response. That's where a patient may need more medicine to get the same effect. It does not mean they're addicted, it doesn't mean that the medicine's not going to work. And we need to remember that opiates or pain medicines are clean drugs. There's nothing in there that's going to -- you can -- more is better. Opiates are the one drug that more is better. Nonsteroidals and Tylenol, it's not the truth. 4000 mg in 24 hours is the maximum dose of a nonsteroidal or a Tylenol.
And what happens to our patients who are uncomfortable is they get a drug called Vicodin, and they don't realize that Vicodin has Tylenol in it. Then they may get Vicodin Extra Strength, which has 500 mg of Tylenol in a tablet. So they're taking two of that; that's 1000 mg. And then in two hours, when that's not quite strong enough and they're uncomfortable, they're taking two Extra Strength Tylenol, because they don't know there's Tylenol in Vicodin ES. And now we've had 2000 mg in four hours of Tylenol and that's when we get into trouble. So we need to think about those things, when you're taking care of -- what are you giving and what's in it? So that's the key.
But don't be afraid of dependence. More will work if they need it. So if they need pain medicine now to be comfortable, then they need pain medicine to be comfortable. And that's not our decision, that's their's. It's quality of life.
Tolerance doesn't occur. That means that it won't work later; it will work later. So not to be afraid, tolerance doesn't occur. And withdrawal symptoms can occur. That's dependence; if you take away pain medicine after someone's been on it for a while, they'll have withdrawal symptoms. And then we all go, "Op, they were addicted, I told you."
No, they're not addicted; it's just because those receptors are used to seeing the medicine. We don't stop steroids abruptly. We don't stop many heart medications abruptly. And we even look -- if you look at some of those high-dose antibiotics that all of us may have taken at some point in our life, when you stop those antibiotics, you feel terrible. You're having withdrawal, because your receptors are used to it. So don't be afraid of those things; those are the biggest barriers to good quality of life in pain management.

Slide 28
You want to assess pain and ask patients, "How do you feel? Sharp, shooting, dull, achy, give me an idea of what's going on."

Slide 29
And then look at your pharmacologic interventions. If someone is having a lot of pain and you're needing to medicate them every four hours or they tell you, "If you don't wake me up in four hours and give this during the night, I'm going to be miserable," then you know they need to be on a long-acting. And there are three major long-acting medicines, so don't -- there are things there that they can use. So please, think about that.
Give them what they need and then let's make sure we give our quality of life a better idea too. Because you're not thinking about it every four hours, "I've got to be home, I've got to medicate." Because the reality is there's something that may last twelve hours or 72 hours for Duragesic fentanyl patches. So think about those things.
Bowel regimen is important to remember, because we all know that everyone who is on any kind of pain medicine can become constipated, so that's important to know, that's important to stop. Because I told you, constipation has something to do with fever. It also has something to do with nausea and vomiting, so we'll talk about that. Something that simple to correct may be -- well, for some patients, that may not be so easy to correct, but I'm known as the bowel queen at Cedars. And so I always tell them, "I've never met a bowel I can't move." So that's the key; you got to keep it. And I helped with some of that unexplained nausea before, so think about that.

Slide #30
Non-pharmacologic interventions are important for all of us and there are lots of different treatments -- or symptoms. So think about relaxation techniques and we have to think about distraction, hypnosis, massage, acupuncture -- if you have a good acupuncturist, that can be very efficient in helping with the discomfort of either pain or emotional pain either. So think about those kind of things and pull onto those resources.
Yes, you have a question?
Q: [INAUDIBLE]
DENISE R ECONOMOU, RN: Because the fear --
Q: Because of the fear of --
DENISE R ECONOMOU, RN: Spreading. So, and, you're right. In lymphoma patients, massage is not usually recommended for actual -- but you can still do a soft touch and that's -- if you look at some Rakee therapy? It's soft touch, it's not a deep massage or any kind of manipulation of lymph fluids or anything. Which is key, because you're still touching, you're still offering that feeling of caring, of supporting -- for all of us, we can benefit from those things.

Slide 31
So there are other options out there that could really be effective. But you're absolutely right, thank you for pointing that out.
Again, looking at intake of fluids -- and again, that's an underlying thing.

Slide #32
Depression. Depression is and important symptom for all of us, because as the patient who's been diagnosed with this disease, it's confusing and there's lots of different things going on and lots of different phases. That watch and wait or that active treatment or being in studies. It's frightening, it's scary, it's depressing.
It's depressing for us, because we're not sure how to direct them. What do we do? How do we support them? What do we guide them with? And what do they do? They look at you and say, "What should I do?" And you don't know any better than they do. So that's why things like this are important, because we're learning a lot of information in this weekend to think about it.
But how do you decide whether it's sadness from the clinical depression or really treatable depression, the kind that needs medication? And that's the key when you look at it. But you want to also try to find a way of asking about depression without being kind of -- of acting like "You're not depressed, but do you feel depressed? You should feel depressed, because we're here, we care about you."
And so the way you communicate is important. When you allow them -- allow your loved one the ability to say, "You know, this is sad." And also for you to remember that you can say that too. But it's to how you communicate it. So you don't say, "You know, this is really depressing." Because then they look at you like, "You know, this is really depressing." Because then they look at you like, "I'm really sorry, I don't mean to depress you."
But the thing is, you know, as you share together, it also is good for your relationship to say, "I know you're sad, I'm sad too. This is both of us being affected with this." So we need to help patients and loved ones and family members be able to say, "This is depressing."
You know, even our children in some ways that are exposed to this and are around it all the time, they don't know how to put into words "depression," but you see it in their activities or their lack of activities, in their schoolwork, in the way they're interacting with their friends. It changes. So we need to be, as caregivers, as stepping up to that role, aware of what's going on. And sometimes it's a lot of responsibility, but we need to think about that.
It's treatable; there are interventions for depression. So we need to think about that. So again, the reassuring approach, "I need to understand how you're feeling so I can help you better."
Identify support systems around and that's the key. Because there are many supports systems around and maybe you're not aware of it. We have Wellness Community here in Los Angeles that's really wonderful about providing support groups as well.

Slide #33
So if you look into the Lymphoma Society and also www.cancer.com, there are other resources as well. So think about where can you go and do think about that.
As caregivers as well, there are many caregiver support groups. I know major universities are usually the big ones to have them. Certainly I know UCLA has one that I'm involved with over the course of the year. But that's key, because you meet other caregivers. And that's why things like this are important, because you can meet together and hopefully there'll be time where you can talk to other caregivers and say, "What do you do for this? How do you manage that?" and that's key.
Think about what's happening. Is there an empty mood, that kind of dull look? Fatigue or decreased energy, sleep disturbances are part of depression, difficulty concentrating. All of these things, and I've just told you about anemia, so you look at all these things kind of overlap and it's difficult sometimes to kind of figure out what we're looking at, but think about what's going on.

Slide 34
Again, irritability, excessive crying can also be symptoms of depression. Thoughts of death or suicide, unexplained aches or pains, all of these things together can be seen as depression, so you want to think about it.

Slide 35
And what we always ask a patient is: "Can you find moments of happiness? Can you still laugh at a joke? Can you still find happiness in something? Can you still enjoy something?" And that's a key to help me understand whether someone needs to be medicated. And as caregivers -- yes?
Q: [INAUDIBLE]
DENISE R ECONOMOU, RN: If you look at, there's a wonderful book that I happened to pick up on side effects that also had something on it. And then, afterwards -- I'm happy to give you my talk, I have it here, on the list. But there are so many things. But if you -- did you see the book in the room? I may have it here.
It's a wonderful paperback book on side effect management and it goes into depression and it goes into side effects like nausea, vomiting, eating disorders, things like that. So you see it. And that's absolutely true and you do need that, because as caregivers, you're not going to remember all this. You need to have resources that, when you have the problem -- like a dictionary -- you go to eating problems and you look there and see what you can do.
The American Cancer Society also has wonderful booklets. You know, the 1-800-4CANCER number she gave earlier? Great resource number and they'll send you those things free. So fatigue management, pain management. They'll have eating disorders, different things. Depression -- there is one on depression as well. And they can be very helpful. So please, absolutely, you need those resources and that's the key.
Yes?
Q: [INAUDIBLE]
DENISE R ECONOMOU, RN: Sure. And they have the disk, so we can either -- I don't know whether they'll put it up online or how it can be. Because I know they're filming this now to go online. So this will be online and I'm sure that these slides will be in there as well. Does that help? Great.
Q: [INAUDIBLE]
DENISE R ECONOMOU, RN: It's not enough. What we're talking about is -- yes. What if your loved one is on an antidepressant, they were on it before they fell out of remission and now they're experiencing continued depression, they're on the antidepressive and they're still feeling these feelings of lack of self-worth and sadness and -- which are appropriate, it's where you're at. But the other thing is is that when the -- that's when the health care professional needs to reevaluate whether or not you need to switch antidepressants and that's the key.
So it's hard, because you can't just go home and fix it, but you got to -- you've got to talk to your health care provider and change that medicine. There are many different antidepressants and some work in other ways for acute depression or chronic depression and can help with those things. So it's important to change that, possibly.
But the self-worth in that thing is another issue as caregivers that we all deal with, because our loved one, our patient does experience that and especially depending on their role. If it's the primary caregiver or the primary breadwinner and all of a sudden now they're not able to work like they were used to and they see you trying to take care of them, trying to go out to work, doing all of that, we know that self-esteem issues are really important. So that psychosocial support is so important, but again that comes from really helping you being able to manage some of that and get resources in. Or get them to different resources, the support groups and the psychosocial or social worker or a psychologist or psychiatrist, because those issues can really be dealt with.
And many times, they don't want to burden the caregiver with their feelings, so they try to hide it. But you can't turn away from it and that's the key. Don't ignore it; if someone's really saying to you, "You know, I'm really depressed," or you're seeing it, you need to get help. You need to get professional help.
And that's in the form of a nurse to start with who may say, "Hey, let's evaluate this," and then refer you to a social worker. Social workers are fantastic in this area and can really help you and psychologists as well as your psychiatrist for medication purposes. But it's important that we communicate and I understand with you and I know all of us feel it, because it's a difficult spot to be in, because you're still trying to maintain the day-to-day activities, plus support this loved one who's depressed and it's depressing to you as well. That's the key, is that we need to realize it's a blow to us as well. So we need to think about that and how we can help them.
Many times -- especially if it's males, I'm sorry to say -- they don't want to go to support groups. They don't want to talk to anyone about how they're feeling and they're certainly not going to tell a roomful of strangers that they're depressed. So that's the challenge. And I recognize the challenge -- and we have all these women nodding up here, because they know that's what's happening at home. And we're lucky they tell us half the time.
What we usually get is an irritable reaction to something we've said, or maybe even anger or meanness, because they can't cope with this feeling of "I am out of control here." So the key is trying to set up experiences where you can show them that they still matter, even if it's something as simple as saying, "You know, let's talk -- you know, I have this problem in the household or something's going on with one of our children. How do you think we should handle this? What do you talk -- think about maybe we should get in -- you know, let's ask your sister to take the kids for the weekend, would that help support -- give us some time or let's --" you know, and let them feel like they're part of that discussion. You're not just coming in and saying, "Okay, today we're going to do this duh-duh-duh and I'm sending out this and we're going to make things easy for you, because I'm going to give the kids to my sister." And, you know, help them be in that decision.
As hard as it is sometimes to take that time, and sometimes you think, "I can handle this so much faster," because you do it all the time, the key is don't do it. Let them feel like they're part of that decision. So it's important for us to think ahead that way. And especially for those of who -- where the woman is the patient and she's been doing all of the things. And all of a sudden, you're taking away -- because you're trying to help her. So you get the food in there, you're doing the laundry, you're getting the kids taken care of, you're doing all this stuff. And she's feeling like she doesn't matter, nothing -- you don't need her any more.
And so those kind of things we need to help prevent and as caregivers, that's what we can do is kind of think about, "Wait a minute. I know I'm trying to be really helpful here and I'm doing the laundry for her and I'm not -- she doesn't have to cook and she doesn't have to worry about the kids and she doesn't --" but, you know what? That may have been her life and you're taking away some of those things. So we need to remember to keep the patient in that loop, because they need to feel like they matter, so think about that.
And sometimes we don't think that, because you're -- you know, our husbands, we've got 'em so trained and the men in our lives sometimes to think, "Well, okay, I can get 'em food, get their laundry done, and get that -- it's going to make life easy." Well, yeah, but if that's what someone did all the time for you and you take it away from them, you can understand how it feels. So sometimes it's just, you know, putting those other shoes on and thinking, "Now how would this feel to me," and that's the important part.
And that's something that's hard for us to do sometimes, because it takes time and you're usually so tired and you're running around like crazy. You need to back up and sit down and do that attention restoration thing I showed you and sit outside for a couple of minutes and regroup. Think about, "Okay, you know, I've never really thought about how they feel about this. I wonder how this feels to them." And then it's so simple; it's communicating to them and saying, "How do you feel about this? Gee, I hope I didn't make you feel -- you know, you know how important you are to us," something that simple. So remember that.
And we have to remember spiritual needs as well and sometimes that piece -- unless someone's been really active spiritually you may forget it? But it may be something they need now. So think about what your family's beliefs have been and is there something or some way to support that or to bring in someone else who can give that other piece of information that may help. Sometimes that -- as you're diagnosed and you fall out of remission and you all this -- you know, you start to really sit back again, just like at diagnosis.
And that's the thing; we go through phases. So diagnosis is one thing, treatment phase is a different thing, remission is a different thing and then recurrence is a different thing and then end of life is a different thing. So we go through a lot of phases; it's not so easy as a one-step approach. So think about those things, depending on what stage your patient is in, your loved one, think about that.
Looking at depression and alcohol, a bad combination, because what happens is you're just increasing the depression. So we need to think about those things and if you see that in your loved one, help them understand, "Maybe we better think about doing this another way before we get into trouble here." And encourage, again, participation, recognize their needs.

Slide #36 Again, assessment guidelines, assess their pain level, look at sleep deprivation. Things you can think of to help with that depression. Are they on corticosteroids, steroids we know can cause depression, can cause anxiety, can cause all kinds of different things happening. Are they hypoxic? Are they having shortness of breath? That's frightening in and of itself and it also is something that we can correct pretty easily, so you want to think about what's going on.
Psychiatric disturbances on top of it. You know, when you take that baseline-depressed patient and add something like this to them, they're either going to cope with it or they're not. So we need to help them cope in a way that works for everyone around them and that's key.,br> Fecal impaction; again, that old constipation. Or urinary retention; when someone is sitting there anxious because they're having problems or they can't urinate like they need to. That can cause anxiety and people kind of tend to go to anxiety and think, "Oh, this is anxiety," but you have to think about what could be causing this anxiety? So you want to look at anxiety and what else could be going on. Is it the medicines that they're on? Is it a metabolic state? Is it a psychiatric disorder that's rearing it's head at this moment? Think about those things. Spiritual needs again. What's going on? Why are they anxious?
Many times we use a medicine called Ativan and you'll see the benzodiazepine, which can be very effective at helping to reduce anxiety. But for some patients, it may make them feel anxious. And it's just because you've kind of relaxed things, and for some patients who may be having difficulty breathing, that's perfect. Because you relax them so those muscles aren't working so hard. I've even used it for my mom for nausea and vomiting, because it has an anti-nausea effect as well. Because part of what's going on is that stress, that anxious, that feeling. So you can counter that. So you want to think about anxiety in a different way; what's going on?

Slide 37
Again, reassuring, calm approach. You know, anxiety is contagious. Do you know how when your loved one gets anxious and they start talking to you and then what happens? You're anxious and then everybody in the room is anxious? It's very contagious. So that's why the key is when you see it happening around you is to take a deep breath and try to step back and close your eyes and say, "Okay, wait a minute. I'm not going to feed into this. I have to stay calm here and try to figure out what's going on." So reassure them, you know, "We're going to take care of this, I'm going to find out what's going on, let me see if I can help you with this."
But again, look at what's going on in their lives, where -- what's going on with the diagnosis at the time. And use the medications as indicated. And that's the key; try to help them. But again, maintaining that calm assurance, even when you're quaking in your boots, because you're not sure what's going to happen next. You need to really try to do that as best you can to help in that situation, because it's only going to get worse if we're all anxious. So think about that.
And I can tell you from experience, it isn't easy. You know, I got that phone call in the middle of the night after the CT scan where the doctor said, "Get her to the emergency room now." And I thought, "Okay, wait, what did that CT scan show?" And he said, "Well, she's got a large clot in her pulmonary artery in her right atrium of her heart." I'm thinking, "Oh, my God, we were shopping for clothes yesterday, she could have fallen right there." So panic.
And I'm trying to be real calm and say to my mother, "Mom --" as I'm waking her up from a sound sleep. "We have to go to the emergency room right now." And she's confused and wondering why the heck I'm doing this and I'm trying to be so calm and I'm telling my family and then I'm trying to get my siblings into the hospital, because I have no idea what's going to happen. And my father's three hours away in Palm Desert, because he's trying to get the house ready, because we're going to go home the next day. That's all she wanted, to go home. Well, we didn't; we went to the emergency room.
So I'm trying to be real calm as I'm driving down that street to get to the hospital, thinking, "Oh, my God." And I thought I did a good job, but I was like, ho. It was hard. So I know it's hard to do when you're looking at someone you love and you know this is not a good thing that's happening and they're anxious. You have got to really try to maintain it as best you can. It's hard, it is really hard, but think about what's going on.

Slide #38
Eating changes. Probably the most frustrating thing for all of the caregivers, right? We always want to feed. I happen to be Italian -- could you tell? I'm Italian. So I want to feed everybody; of course, everybody should eat and that's important and if you're not eating, it's not a good thing. But we have to help re-kind of frame that to what food intake is for them.
Now depending on what stage you're at and where you're at, you're loved ones are either eating or they're not. And they're not drinking or they are, so you need to think about that. You also need to remember that, and I have learned -- now all those days I used to kind of pat that family member and give them bags full of Ensure and Boost and all these things. "Oh, go home, drink one of these, drink three of these a day. Drink this." The reality is, no one ever drinks that stuff.
It's so frustrating, right? You're laughing because you know. I've got cases of it at home. It was too sweet, she wouldn't do it. So it was a constant battle to get her to drink or eat; she's still doing it. And what happens to my Italian father? He's absolutely crazy, because she's not eating, she's not eating, she's not eating. And of course what's happening is my father are gaining and gaining and gaining, because we're eating, because she's not eating. So think about eating disorders and what's really going on.
Remember taste changes -- these chemotherapies -- and it takes time for those taste buds to come back. So the key for us is to -- when they say it doesn't taste like it used to. You know what? It doesn't. Your taste buds are different. So we need to let them know that and I try to steer patients and family from things that they love, because if they get that funny taste associated with that food that they love -- like in our house, in-and-out burgers? We don't go there. Because I want her to go there when it really tastes as good as she remembers. Because if you take that away, then it's really hard when they can start eating again, their taste buds are back, they don't -- they've got this feeling against those foods.
So taste buds are really important and if they're on high-dose chemotherapy, they've been transplanted, it's a different story. Those taste buds are gone. They taste metal, they may taste dry sawdust. So we need to help them understand that it's not going to taste good. I in fact, made it -- "Mom, this is medicine. You need to eat three times a day something. Something, just look at it like it's your medicine pillbox and this is it." So it's very difficult, but you have to help them reframe and understand "This is getting better. This is how you're going to get better." Help them to know that.
Mouth sores. How many of you have had loved ones with mucositis? It's horrible, isn't it? Horrible. And you know what? I have to apologize as a health care provider, many times we don't understand what you're telling us. I walked into that radiation -- the department. I'd say to that doctor every day, "You know, she's not eating or drinking." He'd say, "I know, give her Ensure --" that's where all the cases came from. "Give her Boost, give her this."
And I'd say, "You know, she's not eating or drinking." "Oh, I know, here." And I'd get more the next week. And I couldn't make them understand. Finally, I -- you know, and I was trying to be -- because not only I'm a nurse in the hospital, you know, my husband's on staff here, I have to try to maintain some -- but I wanted to like wring his neck.
And I said, "No, you don't understand. She is not swallowing her own saliva. Do you understand what I'm saying?" And they're like, "Oh, oh, well, then --" and they give this mouthwash, you know, the magic mouthwash that I've done to patients a million times and don't realize that that's not the answer. That's not, you know, you think it has a little lidocaine in it, it's going to numb their throat -- and it will help a little bit. It's not great.
You know, I kind of used to give it to the patients, like, "You know, take this and you're going to eat a full turkey dinner." You know, no, you're not. I had one patient one time though that did -- was able to eat with the Xylocaine, so I'm just telling you this as an experience. We couldn't understand why all of a sudden he was getting this rapid heartbeat and having a little arrhythmia? He was taking a bottle of it with every dose; way too much lidocaine in that viscous Xylocaine, so it was not a good thing. But he got down food and he just thought, "Hey, I -- more is better. I got to eat here." He had that in there.
And then we kept thinking why is his heart rate going up? And then as we kept writing this prescription and realizing, "Wait a minute. How many bottles are you using a day? Well, you're not supposed to do that." So, think about what's going on. That really helps.
And bowel changes, again. You know, my old constipation. See, that's how I became the queen, because it affects everything. When you're constipated, you don't want to eat, you're full. Think about it. That's where they're at and if that is the problem, you need to ask that question. As hard as it is sometimes for a loved one to tell you, you can say, "Hey, when was the last time you moved your bowels?" It's that simple. So you need to think about it. "Tell me what's going on," because that's going to decrease their appetite as well.

Slide # 39
Look for pain or discomfort. You want to know is there an ulcer going on, is there something -- is their abdomen distended. Those are things that you want to think about to let the doctor know for sure.
Altered taste buds, remember that? Mouth sores, dry mouth, that saw dust in your mouth. So you want to think of soupy kind of foods or foods with gravies, things like that. You got to get creative sometimes. "I know you don't usually eat this, honey, but try it this way, maybe it'll go down a little easier. You need to eat. So we become cheerleaders in so many ways. So we have to think about those things."
And again, depression. When you're depressed, you don't want to eat. So as a caregiver, I don't want to depress you even more, we realize that all of these symptoms kind of overlap and all of you in this room know this. So if there's anything we can do to try to make it better, that's the key.

Slide #40
Good oral hygiene is key. If your mouth is dry, it's difficult to have anything but a dry mouth and have anything taste good. And it's hard to keep that mouth moist sometimes after radiation and different chemotherapies. So there are things in the drugstores like saliva and things that you can use. Don't taste so great but sometimes they lubricate enough. But hard candies, things that they can keep near them to kind of keep their mouth moist is very effective.
Small portions of favorite foods, again, careful. If it doesn't taste right, change it to something else, but help them look at small portions. You know, we get excited sometimes and put this big bowl of spaghetti in front of her. No way, you know? And that overwhelms and what do you do? You don't want to eat. Forget it, it's too much, I can't even begin to look at that plate of food. So serving on small plates with one or two bites of each thing is plenty. That's a start; that's all you're going to get. If you get to refill that plate, great. But overwhelming up front, so think about that if you're having problems with eating with your loved one. Small plate, tiny portions. A couple bites, because that's all you're going to get, so you want to think about that.
Comfortable positions. Where are you eating, what's going on around you? Help them to have an easier thing -- sometimes keeping them in the bedroom all the time because they're really tired or they're really fatigued is not a good thing. Get them out, change of scenery. "You need to get out of that bed. I want you moving, I want you up."
And it's hard, because when you're sick with the flu -- or in the old days, when you'd get sick, what'd you do? You laid around in bed. And that worked then; it doesn't work now. It compounds fatigue to have you stay in bed all the time and it's not good for your depression or your psychosocial needs. So think about that. Get 'em in the middle of the family, get them around. It's good for everybody to be there.
Now certainly, sometimes for patients it's that smell of food cooking that they can't tolerate. And in those places -- and you're not going to feed 'em in the kitchen. You're going to feed 'em somewhere else, where it's a little more -- and if it's the summertime where you're able to eat outside, that's even better, because then they don't have that smell. But so think about some of the things that might be causing a problem with their eating, think about those things. Create that pleasant setting if you can.
And appetite-stimulating medications are there. Megace is one that we used a lot and some of the stimulants that we used, some of the steroids, those things can affect your appetite as well. So sometimes it's simple things like that that can work. It depends on what their needs are and really trying to help, but I know Megace can be very effective.

Slide #41
We're just moving along here through symptoms. You guys are so quiet. Is it just 'cause it's early in the morning or am I really overwhelming everybody or is it just too much? I don't know.
Yes?
Q: [INAUDIBLE]
DENISE R ECONOMOU, RN: Building the immune system for like neutropenia and related to chemotherapy or related to just in general? You know, there's so many things in the health-food stores that you look at that are supposed to build your issues and all that. And I tell you, and I was on the internet looking for things to build immune system and found some different things, never had the guts to try 'em. It's probably the western medicine in me that I'm afraid -- I want to see a study. Has anyone used this stuff? You know, what are we really using?
And it's difficult to say. You know, certainly the best diet you can or vitamins are important. So trying to make sure you're on a good vitamin with multivitamin in there that can give you a little bit.
Q: [INAUDIBLE]
DENISE R ECONOMOU, RN: There have not been studies that have really indicated anything more than heart disease associated with red meat that really affect your immune system or the ability -- you know, certainly they look at foods and it could be with all the foods that are treated with different hormones that we are at risk if you eat large amounts of those things.
I don't give any real dietary things other than eat what you're comfortable with, eat what makes you happy and just do your best. Because there's nothing really out there to say that definitely these things affect your diet. And it's hard because we all read all this stuff and we think, "Oh, maybe this is the answer. Maybe that's why we have this, maybe that's why this is going on." But there's not enough out there to really say that if you eat red meat only, you're definitely going to have heart disease and we know that you have a higher incidence of it. But we can't say that all of these things are affected.
And certainly looking at vitamin A. We do a lot of things with B6 and B12 in support. Magnesium in support and now we certainly are looking at folic acid as being an important part of everyone's diet. But other than that, I don't have anything specific.
Now there are great websites. And certainly when you get on dot -- cancer.com, there are things on nutritional ideas and things to look at, because there are many things. And ACS, 1-800-4CANCER has some things as well for dietary things.
And that's true, but we all know pretty much what we've always known: It's that food pyramid and thinking five fruits and vegetables and looking at leafy -- dark, leafy greens. Vitamin A is important and those things are important. But all of us who have ever had a loved one who isn't eating know that it's impossible to get that sometimes. So really trying to find the best you can do is why food supplements can be so helpful, because at least you get more of those vitamins. Make the calories count.
If they're dehydrated and you're feeding them only water, there's nothing in water to really help them. Yes, they need water, but if you can get Gatorade or something else that has maybe sugar and electrolytes in it, at least you're making it worth it. Give their bodies something to build with. So that would be my recommendation. And that may help.
Yes?
Q: [INAUDIBLE]
DENISE R ECONOMOU, RN: Mm-hm. Right. So is he concerned about losing that weight now?
Q: [INAUDIBLE]
DENISE R ECONOMOU, RN: Has not lost it, no. Talking about how when eating bland calories, how you put on weight, your loved one puts on weight. And it's true; caregivers are always taught how to add calories. You know, "Add in that wheat germ," we used to say. "Sprinkle wheat germ, sprinkle dried milk in everything. Add those calories," and it's true, because most patients are losing weight. But steroids and certain like that, you're going to gain weight, because your appetite is up and you're not having that problem. You're going the opposite way.
And other than just really kind of paying attention to how much is going -- how much carbohydrate, what we're really doing there. There's nothing else in -- and you hate to limit it, if that's all they're eating, because it settles in their stomach better. They know they can tolerate it better. Then you just kind of have to work with it and let them be who they are and that's the key.
I know it's hard as a caregiver, because you're worried. And it's really going to be patient-specific. For the patient that really, afterwards thinks, "You know, I can't stand this extra weight," then there's going to become a diet regimen where you're going to look at that. But again, it's really looking at your intake and what you're eating. So that's the bottom line for all of us and weight loss and weight gain.
Q: [INAUDIBLE]
DENISE R ECONOMOU, RN: Not high calorie? You know, cream soups, high calorie. Anything bread-wise, high calorie, high carbohydrate. There's not a whole lot of anything that's bland. And then of course you don't want to get into anything that's citric acidy or anything like that, because that's not going to help. So the fruits and vegetables can be a kind of thing. You can stick to green vegetables and that sometimes if you -- depending on how it's made. You can keep it kind of bland in that sense. But if it's for a male, it's difficult to get them to eat green -- I hate to be sexist, but you know?
I don't know, in my house, I have three sons and a husband, so my fourth sons. So none of them eat anything green. You know, if you put anything green near anything -- other than salad -- they have a fit. So it's difficult when they're the patient, because they don't eat that way. They want to eat pasta and they want to eat steak and potatoes. It's terrible, terrible, hard to live in that house, because you gain weight. But that's okay. I love to feed everybody, I don't care.
So think about what's going on as far as -- we're changing, going back to body image and sexuality in a little bit. Because we all know that this truly does affect things. Thinking about what changes are going to occur.

Slide #42
You know, hair loss is important and sometimes even as caregivers, we tell them, "You know, we don't care. You're going to be beautiful if you're bald. We don't care." But the reality is, when it happens, it can be a little unnerving at first and trying to wonder "How can I make this better?" And to realize that your loved one is going through -- especially -- men have it harder than women in this sense, because it's a little difficult to hide that bald head. Now today, it's different, because so many people are shaving their head that men -- kind of you don't know whether they're ill or whether that's just -- they have a statement here. So that's important.
For women, too, it's important to think about, because you know, we really look at women and their hair, it's important and we don't think about it. And I know in breast cancer, it's always been frustrating, because the women that wanted to maintain -- keep their hair, you know, they put that tourniquet on around their head to try to keep their hair. And it was so frustrating as an oncology nurse, because I'd want to tell them, "No, no, no, no. You want that chemotherapy to get everywhere. You want it to get up near your brain. You don't want cancer up there, any cell that's there. Forget the hair." But, you know, it's easy for me to say, because I have a full head of hair.
So that's important as we think about body image, what it means and try the best we can to maintain their look as best as we can. And that's why anticipating is important. You know, and you think you've -- you know, you're going to lose your hair. Okay. But, you know, you really need them to understand, "Now, okay, let's think about this. What are we going to do when you lose your hair? What are you going to wear? Do you want to wear wigs?" If it's a woman, "Do you want to get a wig now while it looks like your hair so you can get it as close as you can?"
You know, that idea sounded good to me, except for my mother wears her hair pulled straight back in a bun in the back. Well, they don't make wigs that look like that. So we got all these things with hair around her face, drove her nuts, she couldn't stand it. So she just wears a hat and a little scarf thing and that looks great on her, but -- so you have to think about each person as an individual. And I teased her and said we should get a red curly wig or something. "Do something fun, mom, be a blonde," you know, but it didn't work. Because, you know, I'm a natural blonde, so I thought she might enjoy being a natural blonde too.
So think about those things. Scarves are important, head things. Look Good, Feel Better is a wonderful program to help with hair loss, so please, if you have that treatment regimen going on and you've got hair loss, help them before they lose their hair. And also remember that as you're losing your hair, you don't just become bald over night, and if you have long hair, even long hair for men, and you start losing your hair, it's uncomfortable. Because you've got hair all over you, it's on your sheets, it's on your clothing.
So help them; cut it short as you can before they really start losing it. It is really a hard thing to do and when it's really long, it's really awful when you're losing it, because it just comes out in handfuls and it literally does fall out. But it doesn't always fall out evenly, so you want to help them as best you can. So think about those things.
And encourage them to ask questions and encourage the resources to help you with that, because there are many wonderful programs -- again, large medical centers that usually have those kind of Look Good, Feel Better programs, but they're important.

Slide #43
Nausea and vomiting. Another problem that we have usually associated with chemotherapy regimens. So you get a lot of medicines upfront, but can have some residual or delayed nausea that maybe you're dealing with or appetite changes, because they're still a little bit nauseated, so things to think about.
I'm sorry, there's a type there, it's common in advanced disease, assessment of etiology is unknown and acute anticipatory or delayed nausea. Delayed nausea is really frustrating because delayed nausea, no one thinks they know what's causing it, and yet it could be delayed from the chemotherapy. So we need to think about what's going on.

Slide#44
Physiologic, metabolic changes in their CNS. Psychological changes, disease-related, treatment-related and other, guess what? What do you think causes nausea and vomiting, other? Constipation, yes. So number one reason for unexplained nausea. So if you have that going on, think about what's going on for your loved one and, again, medicate.
If you need to medicate, especially if it's chemotherapy-related, make sure your doing the right thing. Compazine is a wonderful antiemetic, if you really use it at the time, you kind of anticipate with Compazine. Compazine doesn't work so great when you're already nauseated. And if any of you have used Compazine in your family, you know that. You can't understand what you're doing here. So think about it.
And then, again, remember if they're on pain medicine as well as post-chemotherapy, that those are two different causes of nausea. So pain medicine causes kind of the motion sickness nausea and I'll say to my patient, "Move your head." If they say, "Ohhhh, I can't move my head, it gets worse," then I know it's probably related to the pain medicine, and then you want to use something like Antivert, scopolamine, something that's motion sickness-related versus chemotherapy-related, which means they're nauseated no matter what they do. They move their head, do anything, it's still there, it's always there. So that's the thing.
And we have wonderful new antiemetics. In the old days, we didn't have a whole lot to do. But Kytril and Zofran are wonderful antiemetics when you use them right. So you need to take them as prescribed. And I'll tell you, I don't know the side -- the hard part is and I had no expensive Kytril is to buy over the counter; it's very expensive. So some of these medicines are really difficult, but there are ways to think about getting them and certainly resources when you go to the company that makes them can help you with some of that, but those are good drugs to have around, because you can use 'em. And Ativan, again, benzodiazepines can be very helpful.

Slide #45
Again, physical exam, history, lab values. Are their electrolytes off? Sometimes that can be all that it is. Magnesium, calcium, what's going on? Is that what's nauseating them?

Slide #46
Other treatments can be anticholinergics, like things that dry your secretions up.
And certainly if you have a history of ulcers related to it and especially when you have a patient that may have had hyperacid problems before they were ill and then you give them chemotherapy and they have more problems with acid. So they need to be on something that can help that. So Pepcid, Prevacid, things like that. So remember those may be baseline important meds to help kind of prevent some of that problem.
Again, we're looking at bland foods, foods that can be very fattening but soothing foods. So I tend to ask, "What sounds good?" And you never know. I had a patient who said, "I want jalapeņo peppers." And I thought, "You've got to be kidding. But you know what? She kept it down, that's what she kept down. So I always say, if you're really having problems maintaining and you're really nauseated, tell me what sounds good to you and then you break your neck to get it. Whatever they want, that's what you want to get 'em, because that's what they're going to be able to keep down. So think about those things, how can we do it.

Slide #47
Relaxation. Distraction techniques, very important. You know that band that you can buy over the country and you push that thing and it pushes into that, that's important. That's a distracting technique that can work. Sometimes we do things just with rubber bands, just distract -- pull that rubber band and snap it on yourself. It sounds horrible, but it does distract so that it can prevent it.
The other thing to remember in relaxation is it's important with nausea and vomiting in particular, because again, you're tightening up. That's what's going to happen before you throw up, you're going to tighten up. So you want to teach them how to counter that response, how to relax. Take a deep breath when you start to feel that way, really help them. And that's why medicines like Ativan are helpful with some nauseas, because it helps you relax those smooth muscles, so you don't counter it, you're not so quick to vomit, which is important.
Small feedings, small bites, swallow, chew, long time. Things like that to think about. And basic therapies, again, if they need antiemetics intravenously, it can be very helpful. And sometimes dehydration, sometimes if you can just get 'em into the cancer center or wherever they're being treated, and get some hydration and some medicine through the IV, that can give you some time of getting some good relief.
Now the frustrating part is when you do that, you come home and they're still vomiting, then you need to start looking at other things. That's the thing, but it's a good way to start.

Slide #48
Diarrhea can happen with a lot of chemotherapy regimens. So you want to think about that as well, because what does diarrhea lead to? Dehydration. So you want to think about what's going on, electrolyte imbalances, is there an infection, bowel obstruction. Is something -- have they traveled recently and picked up a bug that's now on top of everything else? So think about how that works.
Also, radiation therapy to the abdomen and pelvis from the specific areas we're radiating. With lymphoma, we need to think about what we're hitting with that radiation, because that's going to lead to diarrhea or constipation problems depending on what's going on. But think about where is my loved one being treated? Where are they shooting that X-ray, because that's the key, that'll tell you what you're going to expect with side effects.
Again, anxiety or stress can be nauseating, and sometimes we may walk around with a low-grade nausea just because we're a little overwhelmed with what's going on right now. So think about what does this mean? Sometimes when we get ill, is it a response to the stress and pressure we're under as caregivers, so think about what you're taking care of and what you're doing every day, because that's enough to make you a little nauseated too, huh?

Slide #49
Diarrhea, again. Think about encouraging fluids. High-protein, carbohydrate intake is important. And low residue; bananas, rice -- we all remember that BRAT diet. And medications, if indicated, for diarrhea.
We tend to not want to stop up diarrhea unless we're having three or more episodes of diarrhea in a day and that's what the doctors going to want to know. How many times a day are they having diarrhea? That's key, because that's going to tell us how dehydrated they might be and what's going on with their electrolytes, so that's key.

Slide #50
Again, as we look about things, the impact of cancer on the family and improving mental and physical health of the caregiver. That's really what we're here for, so let me get into this part and let's see if we can get some things going in the right way.

Slide #51
Impact of cancer on the family. Major changes in usual lifestyle patterns, unresolved conflicts may resurface and that's the thing to remember. That many times, when we're taking care of our loved ones in the family, if there were problems before the diagnosis, they don't go away. They sometimes get worse. So think about interactions in the family and what your family is.
What's the makeup of your family? It may not be a husband and wife; it may not be mom or dad. It may be that you have friends or partners or neighbors or people that have been in your life for a long time or in that patient's life for a long time. And that's their family, that's who matters. So we need to remember to keep those people and sometimes what happens is legally the next of kin is the one that's got that power of attorney maybe or at least the one that they're going to look to for medical decisions. So remember to include in your caregiving cycle -- circle people that are also important to your loved one or to your patient.
So it may not be someone who lives with them, only. It may be a next-door neighbor or someone that's been around for a long time. A friend that they've loved for a long time. Include those people in your circle. Keep their names, know where they are, because you can all work together to give better quality of life to our patient or our loved one and that's very, very important.
Also, unrelieved, unresolved conflict, so think about what's going on with you and your loved one or your family. What other issues between brothers and sisters, aunts and uncles that were there before that are now coming out, because there's a lot of guilt going on. A lot of people feeling really guilty that someone they have maybe not been so nice to is now in a predicament with an illness that can be life-threatening. So we need to help them understand that. That no matter what the phase is, that they need to understand.
And that's the other thing, is sometimes that person who feels really guilty may really want to get in there and do something and, yeah, they're right there in the beginning in that diagnosis phase, but then as treatment goes on to years, they're gone. They're not there. And then when things start changing, you may need that caregiver again, you need to reactivate that relationship or try to pull it in. So, remember to pull on your resources and think about it. Look at ways that you can solve these problems in a way that works for you and pull in resources that you need.

Slide #52
Identify the needs of the family and friends. What do they need to do? Sometimes family members or friends drive you nuts, because they keep saying, "What can I do? What can I do? What can I do?" You need to give 'em something to do. Simple things. I always tell people like if neighbors are really asking you what to do, let them take out the trash cans every week and pull 'em in. They're doing it anyway, it's not a burden for them, they've asked you to let them help. Something that simple takes it out of your head, you don't have to worry about Monday night, taking out the trash. Someone else is going to take out those cans and put 'em back for you. Something that simple can make a difference.
Know what resources you have and make a list of those resources. I always tell everyone make three lists. One list of the things only you can do, no one else can do them, only you. And then a list of the things that you can delegate. How can someone help me, when I've got to go to the doctor's office and do these things or take 'em and wait for that test to be done, that takes hours. What can you do, who can delega- -- who can you delegate to? And put that phone number with that name by the phone. Because when you're really trying to do something, you can't always think about who said they wanted to do what, make a list so you know. "Listen, you told me you could bring dinner over. Tonight's the night, can you help me out?" Find out what you can do, but make that list ahead of time.
And then I always tell people, make a list of the things that make you happy. Make a list, because you don't think about it. Really make yourself write and then, you know, what all -- everyone says. "I can't put anything on that list. I don't anything that makes me happy," because that's where you are at this moment? But you need to really sit there and think about it. There are things that can make you happy and you need to think about that.
You need to ask your patient to do that as well, your loved one. And I have them do it as well. Make a list of what makes you happy, so that we can each take off of those lists something to help the other person. So think about those things, but if you don't set it up ahead of time, it's very difficult to do in the moment. So think about that.
And develop that relief system for that primary caregiver. How can you give someone a little time-out so they can do it? And the key is to really let someone know that you need help and what kind of help you need. Be clear with it; sometimes we don't communicate and neither does our loved one tell us really what they need.
That patient doesn't always tell you, "This is what I need." You get kind of irritability or anxiety or something else, but you're not understanding. So our role as caregivers is to say, "Wait a minute. I understand you're anxious here, I can feel the anger here. What's going on? What do you need? What's the problem?" And it's something that simple sometimes, even for you. When you're trying to tell someone what you need, try to be as clear as you can be.
And that means, also, when you go in to communicate with the physicians, because many times what happens, we walk in with our loved one, there are the patient, the physician's talking to the patient and they're not talking to us. And yet we know what's going on every day and we know what's really happening and that's when they say to the patient, "So how are you feeling." "Oh, I'm doing really good, doc," and they smile and you're kind of going, "Oh, my gosh," and then you just sit there.
And then, you know, the docs are in this [SNAPS FINGERS], right? They're gone and you thought, "I've lost my chance." You know, you've heard it a million times, make a list of the questions you want to ask the physician. But the other thing I tell you is when you're walking into that room and that nurse or that aide is taking you into the room, you want to say to them, "Can you let the doctor know I have questions I need to ask? Can you let 'em know." So when he walks or she walks into that room, she's prepared, she knows. "And by the way, and since someone said something about questions?" So when she's done, she stops or he stops and says, "Wait, someone had some questions?"
And then you can make sure your patient or your loved one knows, "I have these questions I want to ask and these are the things I'm going to ask," because then they start to go, "Oh, don't listen to them." Have you had that happen? The patient? "Oh, don't listen to them, they don't really, it's really -- I'm fine. It really isn't that hard." Well, they don't understand, "Yes, it is and I need answers to this. So tell me where we're going, tell me what to do."
So it's important that we communicate with the physicians and the nurses, because without that, no one's getting anywhere. And I can tell you, as a nurse, on that side, if I don't know what's happening, I can't help you. I don't read minds. As well as I think I should be able to, sometimes I totally miss it. So you need to let your nurses know what's going on and your physicians, because we're the good in-between, we can help get some of those answers for you. If he can't answer it or she can't answer it right then, let us know what you need, give us the numbers and we'll get back to you. And that's not something that's too much to ask the nurse to do; that's what we do, that's our job. We're the patient advocate. So if we're doing our job the way we're supposed to be doing, we're helping you that way. So please let us know how we can help so we can do it.
The other thing is distributing -- I told you about caregiving responsibilities, the relief system again, and inform the children's teachers. If there's children involved in this situation, everyone needs to know what's going on at school. Because they can really help kind of curb some of those things.
I know for my -- in my life, this happened -- it just happened right after September 11th. So I have a 10-year-old who got really attached and really afraid whenever I would leave or whenever anything was going on. And at school, what was happening is he had a stomachache every day. He would run to the nurse's office every day with a stomachache and he wasn't getting through his stuff and I thought, "What's going on?" and I -- and, of course, as a nurse, I'm getting everything worked up, because I think there's something going on. He's got a stomachache, he's got chest pain, this is -- you know, what's this about?
Well, this about watching me taking care of my mother who was living with us at the time and I'm focused on her, because I needed to be with her and as a 10-year-old who was relatively healthy and fine, he wasn't getting the attention he was used to getting as the baby in the family. Of course, he was getting the older brother who were beating him up, because they were frustrated and stressed also. So you have to really look at those children and what's going on and what's behind some of those symptoms you're hearing. And even if it's a grandchild, grandmother thing.
I mean, it -- there's nothing worse than hearing from a friend, a playmate's mother who called me to say, "I know you don't know this, but George was in the bathroom crying." And I thought, "I had no idea." And when you talk to him, typical, bringing up a male, macho here. You know, "How do you -- honey, you were upset today?" "No, I'm fine, everything's fine. I wasn't crying, I'm fine." And yet he was, and so it's hard as a caregiver, because you're -- especially if you're in the middle of child-rearing and everything else, it's difficult, but we need to not forget those children or even other parents or loved ones that are around us that are feeling these feelings.
Think about how you can help them and who do you need to talk to to make sure that the resources they need -- because you can't do it -- are also there. So that's important. Don't forget to let the school know and let them know what's going on.

Slide 53
What's going on, again, with family emotions. What are we feeling, why is this happening. Again, look at their role, what were they doing before they were ill. What were they doing up until they relapsed? You know, they thought they had this beat and then something else happened. So that can be a -- start all over again. You fall back and you start at step one again. You know, the why me? Why is this happening? What can I do? Those are all normal reactions to everything we're feeling and we all have those feelings. Why me? Why does my husband, why does my mom have to have this? We all do this, we all think about that. So it's not wrong to feel guilty about that either.
And that's sometimes things that we don't recognize is we're ashamed or we don't want to say that we feel guilty, because we're angry or we're upset about the situation. But you know what? That's normal. You should feel angry and frustrated with the situation. Nobody wants to be in this situation, but our goal is try to make it as easy as we can and easy may not be the right word; but quality of life again. What's -- how can we get the most quality out of every day? And all of you in this room are better and we need to teach our friends and other family members who don't recognize the importance of that day-to-day.
You know, when someone says, "Oh, live each day," we think, "Oh, yeah, live each day." But, you know, all of a sudden you realize what that means, don't you? What does that mean? Every day. So let those little things go. You don't have to be so neurotic about certain things any more, forget it, it doesn't matter. In the scheme of things, what really matters? So think about those things and allow yourself to go there, allow yourself to think about "How can I cope with this?"
For some of us, we never left our house a mess. You know, you're not used to having to run out and leave the kitchen in a mess, but you got to make that doctor's appointment and you got to get them dressed and you got to get 'em out. So think about that and sometimes you got to let that go for a little bit and it'll get cleaned up; it'll just get cleaned up later.
Or have a meeting with other people in your family and say, "Hey, I'm really doing this and I'm really trying hard. Could you help me out here?" And be clear. "Do the dishes. Take out the trash. Help me with the laundry." Be really specific on what your needs are, because there are things that only you can do. So you need to be available to your loved one to do that or your patient to do that. So think about that, how can you do that and how -- what would allow you to do that and to have that time, to have that time.
I mean, simple things. I know, even in our situation, being able to give my mom a bath. And I've given a hundred million baths in my lifetime as a nurse. But I'll tell you, when I'm able to give one to her, that means more to me than anything and I really feel lucky compared to my siblings, because I'm going to have those moments of talking or laughing or putting lotion on her back that no one else had. And so I feel lucky to have experienced those moments.
So find those moments with the one you love. So that no matter what happens and we're really hoping for remission here and cure -- wouldn't that be nice? Let's look for that four-letter word. That's the key here, so think about how can I get that quality of life every day? If it's for a short time or a long time, let's enjoy it, because that's key. So think about that, think about what's going on in your family and how you can cope.

Slide #54
Again, transition times, every time's going to be different. Diagnosis, again, initiation and cessation of treatment -- that's a big step for many patients. Hospitalization, discharge. Disease recurrence and again terminal care. Now, if we think about terminal care, none of us want to think about terminal care, but we need to think about terminal care. Because it comes for all of us and it may not be the person we're taking care of now, it may be a grandmother or some are parents. So think about that and think about how you cope during those transition points.

Slide #55
Build on your family's strengths. Think about what your family does best. Are you good communicators? If you're not good communicators, how can you maybe improve it a little bit so that it's better? So think about that, ensure the access to information and sometimes it's asking, "How much information do you want?" Now, I can grant you, every patient here wants that information. They're really wanting that information. But there may be times where they don't want that information or you don't want that information.
You need to think about that and be aware of what your family or loved one wants and provide it to them in that way. Or they may say, "You talk to the doctor about this"; they're just too overloaded at this moment and that's your job, then, to talk to the doctor and get the answers they need and share it with them. It's important.
How do you disclose information? Different cultures look at that differently. Not every culture is happy to say, "Yes, we have cancer, we're dealing with cancer here." And so think about that. And it's interesting when you look in this room at the cultures that are here. Because most of us are white in here and probably have a real open feeling with talking about cancer and having cancer and dealing with cancer. A lot of cultures don't do that. You don't admit it; you don't tell that patient they have cancer.
So that's the other thing you need to think about. As health care providers, it's difficult sometimes to know what we can say and what we can't. And I can tell you as a nurse -- as an American nurse, when a family comes into me and says, "Don't tell my mother she has cancer," I get angry. "What do you mean? She has a right to know she has cancer, she has to know what she has to do, she may have things to do, she has to get --" I have -- that's not my right. So that's a difficult part, when you're doing -- you know, you're trying to make sure they're really informed consent. That makes it very crazy for me.
And know how and when to ask for help. And only you know that. Only you can say, "You know what? Hands up. I give up, I don't know what to do now." You need to ask for help when you get to that moment, and that's the hardest thing for us to do sometimes, is to think about that.
Does everybody have a plan for what they're going to do if they needed help? Has anyone thought about that? Are you the only caregiver, do you have anyone else in your circle that's helping you? How many of you have someone else besides just yourself?
Half of you, maybe. A little more than half. That's good, that's a good start; I'd love every hand to jump up. You can't do it alone. So think about how -- who can you, who can you pull into this circle to help you? That's the key, that's important, think about that. And you're the only one that can do it, so make sure you understand that.

Slide #56
Again, look at the anxiety, the depression, the fatigue that you're all experiencing as well as your loved one. Your changes in eating patterns, your stresses associated with chronic illness.
Shortness of breath. I've been experiencing shortness of breath. I worked it up every way I could. You know what? There's no reason for my shortness of breath. My heart's good, my lungs are good. But you know what? It's a side effect of stress. And of coping with grief.
So think about what you may be experiencing physically and the key is to really pay attention to what you're doing, because they're depending on you. You need to do your best to stay as healthy as you can. And that means paying attention to what's going on, taking care of your diet, your exercise and your moments away and that's key. And finding that person that can help you so that your moments away can really be moments away; you're not worried about that.
My dad happens to be a big golfer. And they live on a golf course. I said, "Dad, go play golf. You're here, we got a live-in caregiver for you Monday through Friday. Go play golf." "I can't play golf. How can I play golf when I'm worried about her? When all I do is worry about her?" That's not good. Need to really work at how you can get away and be away. If it's an hour or two, get that girlfriend that you haven't seen or the buddy you haven't taken time with and certainly right now with the baseball, you could have been out with the friends for a nice hour relief.
I tell you, I was taken to Mamma Mia! Which is a play about ABBA and this music. I had to go, it was work-related, it was a group thing, they wanted us all to go. I hadn't laughed so hard in so long. I was -- I thought, "If my children saw me, they would be so embarrassed." I was like singing and dancing in the hallways and I thought, "This is so fun." It felt so good. I had forgotten what it's like to not be under that burden of taking care and doing all that.
But, you know, you don't realize it until you get away from it for a minute and you think, "Wow. I didn't realize I had let that consume my life so much. I thought I was handling everything. I'm working, I've got the kids, everyone's under control." But I hadn't been taking care of myself. So think about those things that you can do -- and even if you just get a bunch of girlfriends or buddies to take you somewhere for two hours, that's key. You don't have to run away for a long time.
And it's important that you explain to your loved one, "It's not because I don't love you or I'm tired taking care of you; I just need to take care of myself." And communication is the key for all of us. And we tend to forget that, because we're all maybe not saying everything that we're feeling and because we want to make sure that we don't hurt anyone's feelings and everybody -- but, you know, honesty is really important between you and the one you're caring for. You need to let them know what's going on. And you can help each other that way.