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Archive for May 31st, 2010

From the moment your wife is diagnosed with Breast Cancer you become her carer 24/7.

The job you have now taken on, without experience ,or knowledge. It is ALL trial and error. But if you do it all with love, you can never go far wrong.

William Green talks about caring for his wife after Breast Cancer.

“Your test results from the biopsy came back positive; you have cancer.

You need to call your surgeon.

” These two sentences, given over a phone line by a cold, unknown, detached voice, a voice that sounded like it was ordering a pizza instead of reporting deadly news, sent my wife and myself on an emotional roller coast ride that is still running. Before I could formulate a coherent response, the line went dead. The Doctor had delivered the message quickly, “professionally,” and efficiently then disconnected the call. As if to tell us; welcome to the world of cancer treatments just follow our directions, don’t ask questions, and you might survive.

My wife broke down and cried. I’m holding her in my arms trying to reassure her that everything is going to be fine; however, in my minded, I’m remembering my mother’s fight with breast cancer 15 years earlier. Technically she was considered a survivor. She made it to the five year mark so that was considered a success by the medical community. The cancer came back at the five and a half years mark; three month after that, she was gone. I didn’t know what to say or how to say it. All I could do was hold my wife tight and let her know I’d be there for her.

She said, “I don’t want to die.”

I told her, “You’re not going to die! You will beat this!” My wife then said something that the full meaning of which did not register with me.

“Don’t leave me!”

I assumed she meant not to let go of her. It wasn’t until after we came out of that dark abyss of cancer that I finally understood what she meant.

Thus began my journey as a primary caregiver, for the second time, but this time it was my wife who needed me.

The Nightmare Scenario

There are classes on being a caregiver, how to handle the stress, how to remain upbeat and positive, what you should do for your love one who is sick; however, most people don’t take those classes until after the fact. If you’re working full time, which most people are, taking classes is out of the question. So you learn how to be a caregiver.

The term caregiver doesn’t even begin to describe what you do. As a caregiver you are a nurse, psychologist, philosopher, cook, cleaner, and drill sergeant Along with the aforementioned jobs, you are also the financial heart of the family. If you don’t work no one eats, treatments stop, and you lose your home. So the stress level is particularly high.

What are you to do?

How do you squeeze forty-eight hours into a twenty-four hour day? Physically and emotionally you can’t, and the person who believes otherwise is just fooling them self into thinking they can do everything. The only thing you have to remember is you are responsible for getting your wife through this ordeal no one else. You must remain positive, reassure your her that you will be there for her no matter what, and most importantly that you love her. These last two points are very important. The nightmare scenario a woman has during this time is that her husband is going to walk out the door.

Right now you’re saying I would never do that, but unfortunately there are men out there who just can’t handle the pressure. They put on a show but when it is time to stand and deliver they are nowhere to be found. Just remember when you stood at that alter, in front of your family and friends, you made a promise to “love, honor, and cherish, in sickness and in health.” Have you ever wonder why sickness came before health? The answer is obvious, it is easy to love, honor, and cherish when your wife is healthy, but when your wife is sick, I mean chemo sick, and emotionally devastated then those nine words take on a whole new meaning. Your wife is counting on you to get her through this and you had better be there otherwise you will never be able to look at your self in the mirror when you shave every morning.

Once the initial news wears off, you begin to fight back and believe me it is a fight. While your spouse is fighting for her life, you will be fighting for her. The surgeons, oncologist, X-ray techs, primary care doctor, and any other specialist, you may have to see, deal with the cancer every day to them it is a job they can’t become too emotionally involved otherwise they will crack up. So you try to understand when they are extremely cold, efficient, and aloof. I do not mean to say that these men and women are uncaring. On the contrary, –with the exception being the doctor who informed us of the biopsy results- the well being of the patient and the dedication to move heaven and earth to make sure everything is done to help the patient is the primary focus of these men and women.

Finding the Right Doctor

Your first hurtle to overcome is finding an oncologist. Your wife needs to pick a doctor who she will feel comfortable with; who will take the time to listen to her and answer her questions, along with your questions, who will explain what is going on in terms that both of you can understand. Most of your time will be spent with the doctor’s staff; the nurses and technicians who draw blood, check vitals, and administer the chemo. These people are the back bone of the practice and they are the ones who make the doctor look good make sure you are comfortable with these people as well. If for any reason your wife, or you feel, uncomfortable with the doctor or the staff find another one. Do not be intimidated or worry about hurt feeling this is your wife’s life your dealing with. Finding the right doctor will help tremendously with your wife’s mental recovery as well as her physical recovery.

The Internet has allowed people instant access to information that twenty years ago would have taken a layman month to find. This can be a double edge sword. Doctors are not happy when patients come in, after a self diagnose through the Internet, and ask for a prescription. Nor should they be. The doctor is the trained professional with almost a decade of training. You will have had maybe four hours of Internet research. You are not the expert the doctor is. I am not saying do not do research. By all means research the type of cancer you’re dealing with find out everything you can about that particular cancer. This way when you do see the doctor you will have a better understanding of what is going on and your question will be more specific which will allow for more definitive answers from the doctor.

My wife and I were lucky the oncologist she picked the first time was fantastic. He was compassionate and upbeat. His staff was first rate their main concern was for the comfort and well being of the patient. They worked around our schedule whenever possible. If my wife or I had a question it was answered immediately. The doctor explained the whole process from beginning to the end, which was five years down the road. The first step in this long process was testing.

Testing

With a diagnosis of cancer the main concern is to find out how far the cancer has spread. My wife was scheduled for lymph nods test, liver test, and a MRI. After each test there was the interminable waiting period to get the results from the doctor. As each test result came back negative we hugged and cried. There was one test that we had the result instantaneously. The bone scan test. The bone scan was also the most nerve racking. When I say the results were instantaneous, I mean it literally.

This test is designed to detect cancer in the bone, white spots mean cancer, if the test results come back positive then the odds are not good. The test involves injecting a dye into the body. This dye then gets into the bones. A computer monitor then reveals if there is any cancer in the bone.

The test begins with my wife was supine on the table, the machine is making whirling sounds, the monitor is slowly revealing her skeleton, just like a curtain being lowered from the top down. My wife’s position made viewing the monitor impossible so it was up to me to give a running commentary as the dark screen slowly dissolved into the gray image of her bones. We held our breath, my wife prayed and I lost enamel from my molars. How am I going to tell her if there are white spots? Millimeter by millimeter the dark screen turned gray each millimeter deciding how long our future together will be. Finally, the tips of her toes were revealed and the bones were clean. The last test was done the cancer had only progressed to stage two. It was in the breast and maybe the lymph nodes, but at this point we knew the chances were extremely good that she had caught it in time. The odds were in our favor. The next step was surgery.

Twenty –Four Hours and You’re on Your Own

Insurance companies have a formula by which they decide the amount of post- operative care a patient should receive after an invasive medical procedure. At the time of my wife’s radical mastectomy the insurance companies deemed that twenty-four hours of post-operative care was all a women needed after undergoing a radical mastectomy. A doctor could only override this if there was a serious medical complication.

We checked into the day surgery wing of the hospital. Filled out the necessary forms, paid the co-pay then sat down. Ten minutes later our name was called. The instructions were simple;

“Go down the hallway take the elevator to day surgery pre- op on the second floor”

We stepped off the elevator went over to the desk and gave our name. The assistant behind the desk punched some keys on her keyboard looked up at us and said’ “Step through the doors to your right. A nurse will take you to your pre- op room.”

We had check in down stairs at six AM she was not taken out of pre-op until Ten AM. I kissed her one last time and said I would be there in post op when she woke up. The transporter, that’s what the person is called who wheels patients down to surgery, wheeled my wife down the hall and into an elevator. As the doors closed I silently prayed that she would be ok then I went to into the bathroom locked myself into a stall and cried. Thus began our separate journeys that day.

While my wife was in surgery, I was sitting in an uncomfortable chair in the day surgery wing of the hospital drinking coffee and watching the clock. The minutes slowly ticked by all I could think about was the worried look on my wife’s face and how I could not reassure her that everything was going to be alright. She was undergoing invasive surgery; she would have a piece of her body removed in the hopes of removing all the cancerous cells. All I could do was trust in the doctors and hope there would be no complications. I can’t remember how many hours I waited; it seemed like an eternity. The seconds ticked of like minutes, minutes ticked of like hours, and hours ticked off like days. Finally the telephone rang- the hospital gives the next of kin a cell phone so the doctor can call and tell you how the surgery went- the doctor’s voice on the other end of the line was clear and concise “The surgery went fine there where no complications. We got clean edges. You can see her in an hour.”

I thanked the doctor and asked, “ She’s alright?”

He responded; “She’s fine there were no complications the edges are clean.”

I thanked him again then the line went dead, what are you suppose to say at a time like that? Except thank God and thank you Doctor.

An hour later I’m in the recovery room holding my wife’s hand as she came out of the anesthesia. Nurses and doctors, standing two beds down, are arguing over who screwed up in the sedation of the patient they are standing over. The recovery room nurse came over and said my wife’s bed was ready and they would watch her for twenty-four hours. Then she would be released.

The hospital room was small and cramped the nurses came and went. The surgeon came in and reviewed the procedure and reassured us that everything was fine. My wife was in and out of sleep for most of the twenty –four hours. By early morning the nurse was in checking on her and preparing her for discharge. Part of the discharge procedure is to teach the caregiver certain procedures that will have to be done until the drains and stitches are removed. The doctor came in checked her one last time, said he would sign us up for a home health care visiting nurse then signed my wife out. Twenty–four hours from the time she went into day surgery and we were on our own.

They Where More Than Just Words

If I Wanted to Pratice Medicine I would Have Gone to Med School

Before we left the hospital, the nurse showed me how to “strip the drains” then “clean and dress the wound.” The drain is what the medical profession calls a clear flexible plastic tube that is sewn into the incision the other end of which is attached to a medium size clear plastic bulb. As the wound heals blood drains into the tube and down into the bulb. Once the bulb is full you need to empty the contents other wise it will back up into the wound.

The nurse showed me how to “strip the line and disconnect the bulb” on one drain then gave me the privilege to do the other drain. The procedure is straight forward but disconcerting for a non- medically trained person. To strip the line you first pinch off the line as close as possible to the incision with you thumb and forefinger of your left hand. You then take your thumb and forefinger of your right hand, wet the tips for friction, squeeze the tube as tight as you can and pull down about three to four inches. This pushes the clotted blood through the line. You continue this procedure until you have reached the end of the line which is usually about three feet long.

Once the line is cleared and all the coagulated blood is in the bulb you then must pull the tube from the bulb and empty the contents of the bulb into the sink. Wash the bulb and reattach it to the line. Once both lines are cleared you then redress the wound with antibiotic ointment and a gauze pad. Safety pin the bulb to the specially designed garment for post mastectomy patients. You will do this procedure about three times a day for approximately three day. All the while your wife will be in pain and you will be fearful of causing more pain. The doctors and nurse didn’t bother to explain that the draining of the blood causes pain along with stripping the line.

Along with the physical pain there is philological pain that you both will go through. She will see her body for the first time with a large flat area, in my wife’s case, with no nipple, and a large purple scar. You try not to react to this sight but you realize that she is seeing her body for the first time with part of it gone. You are wondering what is she thinking, the last thing I wanted to do was to react in any way. When I saw the look on her face I was scared. I kept saying to myself over and over “she doesn’t deserve this; what the hell happened?” I wanted to cry because I could not fix it. I could not take away the pain; I could not fix the physical problem all I could do was reassure her that she was still beautiful and desirable no matter what was happening, and she was and still is!

At this point, I was angry at the world, the medical profession, and the HMOs in particular. I am taking care of my wife who just had MAJOR surgery, a piece of her body had been amputated, I’m afraid I might pull to hard on the line as I’m stripping it and pull the drains out; she’s also afraid of the same thing. I’m worrying about staff infection, I’m afraid she might slip, when I’m helping her to the bathroom or into bed, and I might grab her the wrong way to keep her from falling causing more damage. Five minutes of instruction from nurse and I’m qualified to do this! Are the powers that be out of their minds? If I wanted to practice medicine I would have gone to med school!

We got through those two weeks with out any major physical problems, but those first few days home where upsetting for both of us. We really didn’t know what warning signs to look for concerning post-operative complications. All we where told was if there is a problem come back into the hospital. We were lucky, but I’m sure there are people out there who where not as lucky.

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After cancer treatment, some people notice changes in their memory, concentration and the way they think. Women with breast cancer were the first to report these problems, which they linked to their chemotherapy treatment. So they called the changes ‘chemo brain’. Another name people use is ‘chemo fog’.

It is not clear exactly what causes these memory and concentration changes in people with cancer. So calling them ‘chemo brain’ may not be accurate. Mild cognitive impairment (MCI) is a more accurate description used by doctors. Another name is ‘cognitive dysfunction’.

People use the word ‘cognitive or cognition’ in different ways. It basically means thinking. In psychology, it means the way you process information or understand the world and how it works.

Most people who have cognitive changes are able to do everyday things. But they may notice they aren’t able to do some things quite as well as before they had cancer. Symptoms can include

Memory loss – forgetting things that you normally remember

Difficulty thinking of the right word for a particular object

Difficulty following the flow of a conversation

Trouble concentrating or focusing on one thing

Difficulty doing more than one thing at a time (multi tasking)

More difficulty doing things you used to do easily, such as adding up in your head

Fatigue (tiredness and lack of energy)

Confusion

Mental fogginess

The changes are often mild and very subtle. But if you have them they can reduce your quality of life. Doctors now know that people with different types of cancer may have these problems. So it’s not just breast cancer – and it may not just be chemotherapy that causes the problems.

Who gets chemo brain

It is not certain how many people have mild cognitive impairment after cancer. A review looked at women with breast cancer and suggested the number of women with cognitive impairment is somewhere between 1 in 6 (about 16%) and 1 in 2 (50%). We need more research to confirm how many women with breast cancer have these problems.

A review of studies in 2008 showed that some men having prostate cancer treatment to lower testosterone levels had cognitive impairment. Between about half (47%) and about two thirds (69%) of the men in these studies had these types of changes. The men showed difficulty in coping with problems that involved mentally rotating objects in space (spatial ability) and problems with multi tasking. But we need larger, more thorough studies that include brain scans so we can understand more about how prostate cancer treatment affects thought processes. We also need more research to find out how many people with other types of cancer are affected.

How chemo brain may affect you

The symptoms of cognitive impairment can come and go. How much you notice them seems to depend on what you are doing. For example, if you need to juggle a number of things as part of your normal day, you may notice it more than someone who doesn’t. People often notice it more when they go back to work. Tiredness usually makes the symptoms worse.

For most people, the symptoms have either gone or really improved within a year of ending treatment. But for some people the symptoms can be long term and may continue for years after treatment has finished.

Research suggests that people who have mild cognitive impairment are also more likely to have depression, anxiety, and fatigue. We don’t know whether the causes of these are the same as the causes of cognitive impairment, or whether one leads to the other.

One of the problems with testing for these changes is that current psychological tests are not always sensitive enough to pick up the sort of problems that people have after cancer. So people who say they are having problems tend to come out of the tests with a ‘normal’ score.

Causes of chemo brainWe don’t know what causes mild cognitive impairment. Research suggests that there may be a number of factors that contribute to it, including

Chemotherapy

Other cancer treatments

Anxiety, fatigue, old age, depression

Changes in blood proteins called cytokines

Chemotherapy

So far, research hasn’t clearly shown whether chemotherapy causes these thought and memory changes. Early studies only tested people after their chemotherapy. These tests showed that people had cognitive impairment. But more recent research has shown that some people with cancer have similar problems before they start any treatment and that the changes may even improve during treatment. This implies that it’s something to do with having cancer, rather than having cancer treatment.

German researchers looked at women with breast cancer before, during and after chemotherapy. Their research suggested that other unknown factors affect thought processes before chemotherapy but that chemotherapy may make these problems worse in some women.

Research looking at other types of cancers has shown that chemo can cause thought and memory problems. In 2008, Swedish researchers found that men with testicular cancer who had 4 or more cycles of chemotherapy could be at risk. They tested men who had treatment between 4 and 21 years ago. The men had problems with some aspects of language. They were likely to say similar but incorrect words for things during the tests. About 1 in 3 men (36%) who had chemotherapy had problems, compared with about 1 in 6 men (17%) who hadn’t had any chemotherapy. But these men were only tested after treatment not before.

Researchers have also used MRI scans to look into whether the brain works differently in people who have had chemotherapy. People in the research study did a memory test. The test started simply and became more difficult. At the same time they had a brain MRI scan. In all groups of people, the researchers could see an increase in the activity in the brain during the test. But the activity was less in the people who’d had chemotherapy.

The researchers also found that the area of the brain dealing with emotions became more active in people who’d had chemo and then reported problems. Unfortunately this study looked at the patients at only one point in time, not before and after treatment. To find out how chemotherapy affects people over time, we need long term studies.

A Dutch trial looked at women with breast cancer and compared different types of chemotherapy. They looked at women before and after treatment and compared them with women not having chemotherapy and women who didn’t have breast cancer. The research found that women treated with high dose chemotherapy were more likely to have cognitive impairment than those treated with standard dose treatment.

Other cancer treatments

Many people have more than one type of treatment for cancer, which makes it difficult to work out what is causing a particular side effect. A small study looked at 31 women treated with the hormone therapies, tamoxifen and anastrozole. They found that women taking anastrozole had more thought and memory problems than women taking tamoxifen. Another study compared women taking tamoxifen with women taking exemestane and with women who hadn’t had breast cancer. This study found that the women taking tamoxifen had more problems with memory and organisation skills than those taking exemestane and the women who hadn’t had cancer. We need more research to find out what effects hormone therapy and other cancer treatments may have.

Anxiety, fatigue, old age, depression

From research, we know that people who report thought and memory problems after chemo are more likely to have anxiety and depression than people who don’t have these symptoms. But it isn’t clear whether one causes the other. There could be another factor that leads to thought and memory problems as well as anxiety and depression.

In 2008, researchers published the results of a trial with people who had breast or bowel cancer. People with bowel cancer did thought and memory tests before they had chemotherapy. They did the tests again after chemotherapy. The tests were below normal for 3 out of 10 people tested before chemo (33%). The problems improved after a while. After 2 years, only 1 in 10 people (10%) had below normal results. The researchers in this study suggest that other factors may contribute to cognitive impairment, including anxiety, the cancer itself or other treatments.

Changes in blood proteins called cytokines

Cytokines are made by the body as part of the immune response. Researchers have looked at blood levels of cytokines in women who had treatment for breast cancer. The researchers compared them with cytokine levels in women who didn’t have breast cancer. They found that women with breast cancer had higher cytokine levels. They also found that women who reported thought and memory problems had the highest levels of cytokines. We need more research to find out what this actually means. The researchers are extending their study to include more women who have had breast cancer and also people with other types of cancer.

Future researchIn 2006 a group of specialists and patients set up the International Cognition and Cancer Task Force (ICCTF). This group aims to guide future research and give information to patients and doctors about how to manage the symptoms of cognitive impairment.

In research comparing formal brain tests with symptoms reported by patients, more people reported problems than showed up on the formal tests. The researchers suggest that the formal tests aren’t able to pick up the kind of cognitive problems that people with cancer have. We need more research to look at the best way to test people for these slight changes in memory and thought processes.

Preventing and treating chemo brain

Doctors have been looking into how to prevent and treat cancer related thought and memory problems. It is still too early to know how well these work but they include

Taking a drug called EPO to help raise haemoglobin levels

Aspirin – which works as a mild blood thinning drug

Methylphenidate – a type of stimulant for chronic fatigue syndrome, daytime drowsiness and attention deficit disorder

The aim with EPO or aspirin treatment is to maintain or increase blood flow to the brain cells and so increase their oxygen supply. Understanding more about what causes ‘chemo brain’ will help doctors to find ways of preventing and treating it.

Tips for coping with chemo brain

Keep life simple

Don’t try and do too many things at once

Write lists about what you need to do, things you need to buy and where you left things

Write people’s names down with a brief description to help you remember them

Repeat things back to people, for example, repeat the names of people you meet for the first time

When arranging to meet someone or organising an event write the details down and repeat them back to someone

Talk to people somewhere quiet with few distractions

Keep a calendar on your wall

Write yourself ‘Post it’ notes and stick them up where you can see them to remind you to do things

Eat healthily, exercise, and get plenty of rest – don’t get over tired

Keep your mind active doing crosswords, sudoku and puzzles

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