Category Archives: Patients


Shortness of breath and cancer

The most common side effect of lung cancer is dyspnea, better known as shortness of breath. 90% of Lung cancer patients experience this at some point, during, and even long after treatment has ended. In a Lung Cancer Alliance survey, lung cancer survivors of 5 or more years, still rated it as their most problematic issue. It isn’t only lung cancer patients who suffer from breathlessness. Approximately half of all cancer patients complain of breathlessness at some point. (1) Shortness of breath is sometimes called air hunger. Unfortunately, for many cancer patients, it’s a part of their everyday life, negatively impacting their ability to do the things they need and want to do.

Our Story

In the fall of 2015, Dan’s stage IV lung cancer had progressed in his lungs and had metastasized to his brain so it was time to change his treatment.  They put him on a new type of treatment called immunotherapy, specifically, Opdivo. We had big hopes for this new drug which had been having great results in many patients.

Within 3 weeks, Dan developed a cough.  Coughing was a known side effect of Opdivo. It was getting worse by the week. In November, less than two months into the treatment, we went away for a romantic weekend in St. Paul. We went on a tour of the St. Paul Cathedral and visited Landmark Center. We stayed at the Covington Inn, a floating bed and breakfast on a tug-boat sitting on the Mississippi River. Before leaving St. Paul, we walked along Summit Avenue, a historic district lined with well-preserved Victorian homes, including the Governor’s Mansion.

It was a turning point in our lives.

We got home in the afternoon and went to bed exhausted. Dan was in bed for days. It became nearly impossible for him to speak without breaking into a coughing fit. He had just walked over a mile down Summit Avenue, and a week later, could no longer walk across the room without having to sit down. He couldn’t get a deep breath.

“Helpless. Frustrating. Scary.”

Shortness of breath can feel like a tightness in the chest or an inability to take a deep enough breath. In 2015, my husband suffered from severe breathlessness.  I asked Dan to tell me in a few words what this felt like. He said, “Helpless. Frustrating. Scary, because as you continue to lose your breath, you know there’s a limit to what you can lose before you have a big problem. You see your everyday life getting more and more difficult. Just taking a shower is exhausting. Soon, you’re bedridden and hospice is the only thing you have to help. It’s really very sad.”

There are many causes of shortness of breath.

Among the causes of breathlessness in cancer patients (especially with advanced cancer) are:

  • pleural effusion (fluid on the lungs)
  • anemia (insufficient red blood cells to transport oxygen)
  • obstruction of airways due to tumors
  • lymphangitis (thickening of the lymphatics in the lung, sometimes caused by cancer cells)
  • removal of part of all of a lung
  • smoking-related lung issues
  • heart failure or damage
  • pulmonary toxicity caused by chemotherapy and/or radiation
  • fatigue and pain which make taking a deep breath difficult
  • an anxiety cycle which causes panic and a sensation of breathlessness.

Treatment Options

Shortness of breath
Lung function tests

Once your doctor determines the cause of your breathlessness, they will be able to give you some treatment options. The treatment for shortness of breath will depend on the cause of it. For example, if it’s caused by pleural effusion, the fluid around the lungs will need to be drained.

shortness of breath

We began an investigation into the matter with his medical team, including an oncologist and a pulmonologist. He had bloodwork, scans, breathing tests, and a bronchoscopy. We were told that Dan’s cough and shortness of breath were was not a side effect of the immunotherapy, as was previously thought. The treatment wasn’t working, so the cancer had been progressing. He had lymphangitic spread (2). This is a term used to describe the spread of cancer throughout the lungs. Cancer was filling his lungs and he couldn’t breathe.

“Do you have a healthcare directive?”

The doctors began talking about decisions that needed to be made at the end of life. “What about intubation?” “Have you reassessed your healthcare directive?” We had lived with Dan’s terminal cancer for over three years and yet we were surprised by these questions. It was like having cold water thrown on us.  It quickly brought the reality we were facing, into focus.

Along with attempts to ease the discomfort of breathlessness, Dan began one treatment after another. First, a traditional chemotherapy, and then two different targeted therapies, recently released by the FDA, each one after another. Finally, one worked, Tagrisso. It began killing cancer cells and he soon regained his lung function.

Next post…

Treatment options for shortness of breath include medical interventions, environmental changes, breathing techniques, and exercises to improve breathing. Be sure to read my next post to learn more about some solutions to shortness of breath. The link will go live when the post is published.

 

WHAT ARE YOUR THOUGHTS?

I’d love to hear in the comment section, below. I appreciate my readers as well as the writing community. To show that appreciation, I use Comment Luv. Just leave a comment below and your latest post will get a link next to it. Thank you!

ABOUT HEATHER ERICKSON

In 2012 doctors diagnosed my husband, Dan, with stage IV lung cancer. Since then, our family has been learning what it means to face cancer. I’ve focused my writing and speaking on helping cancer patients and their families advocate for themselves and live life to the fullest, in spite of their illness. My goal is to help people face cancer with grace.

My book Facing Cancer as a Friend: How to Support Someone Who Has Cancer, is available on Amazon.com

I also blog at Heather Erickson Author/Writer/Speaker

Footnotes:

1 Virtual Medical Center, Breathlessness in Cancer; https://www.myvmc.com/symptoms/breathlessness-in-cancer/

2 lymphangitic carcinomatosis (LIM-fan-JIH-tik KAR-sih-NOH-muh-TOH-sis) A condition in which cancer cells spread from the original (primary) tumor and invade lymph vessels (thin tubes that carry lymph and white blood cells through the body’s lymph system). The invaded lymph vessels then fill up with cancer cells and become blocked. Although lymphangitic carcinomatosis can occur anywhere in the body, it commonly happens in the lungs. It can happen in many types of cancer but is most common in breast, lung, colon, stomach, pancreatic, and prostate cancer. Also called carcinomatous lymphangitis. (NCI Dictionary of Cancer Terms)

 


cancer survivorship tip

When people hear that my husband has survived for 6 years with stage IV non-small cell lung cancer they often ask me what our top cancer survivorship tip would be. So in honor of his 6th cancerversary, I have put together some of the best advice we have used and continue to use.

Cancer Survivorship Tip #1

Get Educated

I don’t mean that you should read articles filled with pseudoscience. You should find out exactly what kind of cancer you have and what the newest and older treatments for this cancer are. How can you expect this cancer to affect your life in the near future? One of your best resources will be your oncology team. That brings us to the next tip…

Cancer Survivorship Tip #2

Build a Trusting Relationship with your Oncology Team

Don’t be afraid to ask questions. Your appointments are a time to check in with your doctor and to get any unanswered questions addressed. It’s helpful to write down these questions in advance. When you see your doctor, fire away. He or she will be glad to know what’s been happening with you since your last visit. As you doctor answers your questions, write down what he or she says. It’s easy to forget if it’s not written down. Better yet, bring your caregiver along so they can write everything down. Two sets of ears are better than one.

Also, be honest and open about medications you are taking (including over the counter meds like Tylenol or antacid) and symptoms you may be experiencing. Those details can have a big impact on your treatment. Some cancer treatments don’t work properly if you are also taking antacids, but your doctor can give you a special antacid that is safe to take with your treatment. Some symptoms are important indicators of whether or not you are getting too much treatment or that the treatment isn’t working and it’s time to change to something new.

Oncology Care Teams

Cancer Survivorship Tip #3

Don’t be afraid to get a second opinion

This is especially true if you don’t trust your oncologist for some reason.  Check in with another clinic and see what they have to offer.Atn the beginning of my husband’s cancer journey, he visited the Mayo Clinic for a 2nd opinion. They told him he was already getting top notch treatment. This helped him feel more secure about the plan his oncologist had put together for him. Later on, when his oncologist ran out of options, she sent him back to the Mayo Clinic to be enrolled in a clinical trial. This opened up a new avenue of treatments to try. There is no room for ego in cancer treatment.

Cancer Survivorship Tip #4

Ask about Genome Testing[1]

Checking for genetic mutations can help your doctor find targeted treatments for your specific cancer. These treatments are often more easily tolerated than traditional chemotherapy. Many are available in oral form, making them easier to take. By trying a treatment specially targeted for your mutation, you increase the likelihood of it working. That’s a win-win!

Also, get retested after a couple of years. This area of oncology is a rapidly changing one. New mutations are being discovered all the time, and with them, new targeted treatments are being developed.

Cancer Survivorship Tip #5

Don’t shun older treatments

Sometimes patients get discouraged when their only available option is an older, traditional chemotherapy. No doubt, this is a tough pill to swallow (or more accurately, a tough infusion to take), but this can also be the treatment that gives you extra time. That extra time might mean a new treatment becomes available. That’s what happened three years ago when my Tagrisso came on the market. The time a traditional chemotherapy gives you might also mean that a trial becomes available. That’s what happened recently for my husband. And even if neither of those happens, a traditional chemotherapy is often the ideal treatment option for a cancer patient. It could bring you into remission or treat your cancer altogether. Your doctor will be able to give tell you what to expect.

Cancer Survivorship Tip #6

Have a good support system in place—and use it.

This could include a primary caregiver, family, friends, online cancer support communities, your oncology care team, your faith community, long-distance support, and neighbors. A communication tool like CaringBridge is an ideal way to tell your loved ones what’s happening with you.[2] You can help coordinate help via the planner. You can schedule more than just meals with it. Consider using the planner to ask for help with errands and rides to the doctor as well. It is as useful as you allow it to be.  Family and friends wish more than anything that they could cure your cancer. Since they can’t, let them do the next best thing by allowing them to help you and your family out during this difficult time.

Cancer Survivorship Tip #7

It’s okay to change direction in your journey

We often hear the message that you have to stay strong and fight. Sometimes, the thing that requires the greatest amount of strength is knowing when it’s time to take the gloves off. This is not a failure. This is another part of your journey. It is a time of inner healing and relational healing as you pull your loved ones close and say the things that are often left unsaid until the end of a life. In the United States, we are so focused on how to live well. One thing we don’t teach in our society is how to die well. There is an art to it. It takes a community. Only you know when it’s time to transition from one leg of the journey to the next. Hospice is the ideal way to make this transition. It’s a team approach to end of life care. It isn’t just for the last week of your life. Anyone with a life expectancy of 6 months or less qualifies for hospice care. It has been proven that patients on hospice actually live longer, more comfortable lives than their non-hospice counterparts.

Cancer Survivorship Tip #8

Pray

Our family prays, not just for our situation, but for other families we know or hear of who are going through this same thing. If you have a faith life, I highly recommend praying. I’m not the only one. I suffer from rheumatoid arthritis and fibromyalgia. My 1st rheumatologist was an amazing doctor. He was a devout Muslim who ended up going back to his home in Pakistan. Before he left he gave me a parting piece of advice. “You believe in God? Pray. I truly believe that prayer will help you. It will center you and give you greater peace. This will help to reduce pain.” That was non-denominational advice from a highly respected rheumatologist. To get through this cancer journey, we have prayed and continue to do so.

Cancer Survivorship Tip #9

Your Journey is Unique

No two cancers are alike. No two lives are alike. Because of this, it’s important that you don’t chase after fad cure-alls. Instead, get really grounded. Gather your tools, your support system, and your knowledge. Decide what you can do today. Tomorrow things may change, but today, there’s one thing you can do. Maybe it’s some information you need to read up on from your doctor, or setting up your CaringBridge.  Perhaps you have to look into help to get your kids through this. Whatever it is, just take it a step at a time.

What Are YOUR Thoughts?

I’d love to hear in the comment section, below. I appreciate my readers as well as the writing community. To show that appreciation, I use Comment Luv. Just leave a comment below and your latest post will get a link next to it. Thank you!

ABOUT HEATHER ERICKSONThe Erickson Family

In 2012 doctors diagnosed my husband, Dan, with stage IV lung cancer. Since then, our family has been learning what it means to face cancer. I’ve focused my writing and speaking on helping cancer patients and their families advocate for themselves and live life to the fullest, in spite of their illness. My goal is to help people face cancer with grace. My books are available at Amazon.com:

The Memory Maker’s Journal 

Facing Cancer as a Friend: How to Support Someone Who Has Cancer

Facing Cancer as a Parent: Helping Your Children Cope with Your Cancer

I also blog at Heather Erickson Author/Writer/Speaker

Footnotes:

[1] Not all patients have mutations with treatments available, but it is worth asking about.

[2] There are other sites available, but after trying several, I have found CaringBridge to be the easiest to use and the one my support system used the most. Feel free to use whatever site works for you and your family.


mesothelioma advocate

As an advocate for cancer patients and their families, I daily hear from people facing cancer. Recently, a gentleman named Virgil wrote to me about his experience, Doctors recently diagnosed Virgil with mesothelioma. This diagnosis turned Virgil’s life upside down.

What is Mesothelioma?

Mesothelioma is a rare cancer that forms in the thin protective tissues which cover the lungs and the abdomen. Exposure to asbestos causes cancer in the mesothelium tissues. This cancer is caused by exposure to asbestos. Asbestos is a group of silicate minerals that are fibrous in nature and functions well as a fire retardant. It was once a commonly used insulator. Now that the dangers of asbestos are well known, it has fallen out of use. It can still be found in old buildings and machines. The United States is one of the only developed countries that has not outlawed the use of asbestos, entirely.

Virgil’s Story

Throughout his life, Virgil has had many jobs that have exposed him to asbestos, including automotive and demolition work, I’ve. He says, “On some jobs, the air was so thick with debris and asbestos you could taste it in your mouth.”

Virgil can no longer work and now, mostly lives off of social security disability. Because of fluid buildup in his lungs, he has to be careful about overexerting himself. He has a portable oxygen tank which gives him some mobility. Still, he must limit his activities, Virgil spends a lot of his time spreading awareness and informing others about the resources that helped him on his journey.

Finding resources isn’t always easy

Virgil says, “When I was diagnosed I needed immediate medical attention. I contacted all the top websites on the internet that are supposed to help people with my type of cancer but nobody got back to me.” Then he found Mesothelioma.net. “Even though I contacted them on a Sunday one of their patient advocates gave me a call back within minutes.”

Virgil found valuable information at Mesothelioma.net; information on mesothelioma treatments and doctors, asbestos trust funds for victims, and a lot more. They also sponsor The American Cancer Society, the MD Cancer Center, and the Make a Wish Foundation “They gave me a great deal of helpful information on doctors and resources available to me.”

Mesothelioma advocate

Virgil is now receiving cancer treatment at the National Cancer Institute. The patient advocates have even provided him with financial assistance so he could afford a place to live during his cancer treatments. “If I had not reached out to mesothelioma.net, I would likely be homeless and more importantly in hospice waiting to die. These people gave me my only chance at survival.”

Advocate: Paying it Forward

One of the most important things you can do to ensure your survival is to advocate for yourself. Virgil is an amazing example of an advocate. He searched for information and assistance and is now sharing that information with others. If you have Mesothelioma, check out the information at mesothelioma.net and the mesothelioma resource page at Facing Cancer with Grace.

WHAT ARE YOUR THOUGHTS?

I’d love to hear in the comment section, below. I appreciate my readers as well as the writing community. To show that appreciation, I use Comment Luv. Just leave a comment below and your latest post will get a link next to it. Thank you!

ABOUT HEATHER ERICKSON

In 2012 doctors diagnosed my husband, Dan, with stage IV lung cancer. Since then, our family has been learning what it means to face cancer. I’ve focused my writing and speaking on helping cancer patients and their families advocate for themselves and live life to the fullest, in spite of their illness. My goal is to help people face cancer with grace.

My book Facing Cancer as a Friend: How to Support Someone Who Has Cancer, is available on Amazon.com

I also blog at Heather Erickson Author/Writer/Speaker

Originally posted 2018-03-05 07:00:27.


Good Nutrition

Getting good nutrition can be difficult when you have cancer, both because of the disease and side effects of the treatment. There are some things you can do to overcome this obstacle to your healing.

Cancer can make good nutrition more difficult

Patients with head and neck cancer often have malnutrition before they start treatment. This is due to pain and trouble swallowing, swelling, and bleeding. Often a patient needs to consider a feeding tube as a temporary way of receiving the nutrients they need during their treatment.  Eating softer foods is important when you have cancer of the head and neck.

The pancreas makes an enzyme which helps break down fats, proteins, and carbohydrates. This enzyme aids digestion and helps to neutralize stomach acid as it enters the small intestine. If the pancreas isn’t working properly, there can be a shortage of these enzymes. This often means the body doesn’t get enough fat and fat-soluble vitamins from the food you digest. Proteins may not be completely digested, leading to the formation of toxins or allergies. Your pancreas also might not break down carbohydrates, leading to diarrhea and other problems with your digestive system as a result of a malfunctioning pancreas.

There are so many reasons why it can be difficult for patients with gastric cancers to get good nutrition. Patients may experience loss of appetite, both from treatment and cancer itself. The stomach may not empty properly. This can cause the patient to feel full longer.

 

Cancer treatment can make good nutrition difficult

Surgeries and radiation can make eating and digestion painful. Chemotherapy and radiation can cause severe nausea and vomiting. Mouth sores can also make eating a painful experience. Ask your doctor for advice on ways to ease discomfort and nausea.

Chemotherapy

Chemotherapy affects rapidly dividing cells like the cells that line your mouth, throat, stomach, and digestive tract. This can quickly affect your ability to get good nutrition by changing the way things taste and your appetite.

The time and duration of your chemotherapy can affect the severity of your appetite loss. Your appetite will most likely return to normal within 2-6 weeks of ending chemotherapy. Even if you don’t feel like eating, it’s important to try to get the good nutrition you need to fight infection and repair tissue damaged by cancer and its treatment. Getting good nutrition also helps fight fatigue and weakness

See a Nutritionist

Ask if your cancer center has a nutritionist on staff, or can refer you to a nutritionist who specialized in oncology nutrition. Oncology patients have special nutrition needs as well as oncology-related issues that can interfere with meeting those needs. They might be able to prescribe extra vitamins or supplements. There are also prescription medications that can help with appetite problems. If thing don’t improve and you begin to lose too much weight, your doctor can help you decide if temporary tube feeding or getting extra nutrients via IV is a good idea.

When Dan was first diagnosed, he saw a nutritionist who was able to give us some great advice about what he should be eating and how to make meeting his nutritional needs easier. She knew the issues that could crop up and make doing this harder. She gave us some easy recipes for shakes and smoothies that made getting the right kind of protein possible, even if Dan wasn’t up to eating solids.

Good Nutrition

Other Tips for getting Good Nutrition

Most cancer patients have higher energy and protein needs. Meal replacement beverages can help supplement those needs. Ensure with Revigor is one example of these. You can make some great tasting shakes at home in your blender and even add protein powder to give them an extra boost.

Along with smoothies, try making Popsicles from blended fruits. This can help increase your caloric and nutritional intake while soothing an inflamed mouth or throat.

Watch the spices! You may need to eliminate certain spices that bother your system. On the other hand, if irritation isn’t a problem, adding new and interesting flavors and spices to your food might be just the thing to entice your palate.

Chemotherapy often changes the taste of your foods. Sometimes the food you eat tastes metallic. Reduce this effect by eating with plasticware rather than metal utensils. Cooking in glass or enamelware can also help.

Choose foods that are high in calories and protein, as well. Stir some protein powder into your ice cream or pudding. Every little bit helps.

Eat what you can, when you can.

When Dan started having trouble with his appetite, we went to the store and walked down all of the aisles. When he saw something that looked appetizing we tossed it in the cart. He keeps his snacks nearby so when he’s ready to nibble, they are there. He ate frequent, smaller meals rather than 3 large meals every day.  He found it easier to eat more in the morning, so that became the main meal of his day rather than dinner when he found it hardest to eat.

If you find it hard to eat solids, don’t waste your fluids on non-caloric ones. You are doing the opposite of dieting. Instead, drink fruit juices, milk, and other beverages that have calories and nutrients. It may not be the optimal way to get calories and nutrients, but at this point, you just do the best you can.

If sitting down at the dinner table feels overwhelming, take your mind off of it and eat while watching your favorite show. People are often told that it’s not a good idea to eat in front of the TV because they will eat more than they realize, without meaning to. Again, you are doing the opposite of dieting. This is your chance to break all of the rules.

If you are finding that you never feel hungry, eat on a set schedule. Every couple of hours eat a small meal. It might just be a banana or a half a sandwich, or maybe a scoop of ice cream. These small meals will give you nutrition and maybe even some good nutrition to pull you through and fuel your body.

 

What are YOUR thoughts?

I’d love to hear in the comment section, below. I appreciate my readers as well as the writing community. To show that appreciation, I use Comment Luv. Just leave a comment below and your latest post will get a link next to it. Thank you!

ABOUT HEATHER ERICKSON

In 2012 doctors diagnosed my husband, Dan, with stage IV lung cancer. Since then, our family has been learning what it means to face cancer. I’ve focused my writing and speaking on helping cancer patients and their families advocate for themselves and live life to the fullest, in spite of their illness. My goal is to help people face cancer with grace.

My book Facing Cancer as a Friend: How to Support Someone Who Has Cancer, is available on Amazon.com

I also blog at Heather Erickson Author/Writer/Speaker

Originally posted 2018-02-19 07:00:34.


Oncology Care Teams

When someone is being treated for cancer, they will work with a team of medical professionals in the oncology department. This team approach ensures you get the best medical care possible. Who are some of the people on a care team?

Receptionist/Appointment Specialist

This will be the first person you talk to at the cancer center. They take your insurance information as well as your co-pay. When your appointment is done, they will make upcoming appointments that your doctor has ordered. These may include lab work, imaging, and future oncology appointments.

Lab Technician

The lab technician will take your blood, or urine and run any necessary tests on it.  If they are taking blood, they may access your port to do this. The results let your oncologist know a lot about your health. They can see whether you have signs of being immunocompromised. They can detect anemia and other issues such as low protein or magnesium levels. From this information, your doctor can make recommendations, including whether you will receive your treatment that day.

Care Coordinator/Patient Navigator

This may be a nurse, a social worker, or even a volunteer. He or she will be your “go-to” person. They will likely be one of the first people you will meet in the oncology department. Your care coordinator will learn as much as they can about you, your family, and your health. He/she will Find out what your needs are and then connect you to other people who can help with specific concerns. They may help you find financial resources, counseling and support services.

Our care coordinator’s name was Anne. She was so compassionate as she listened to our story. She even cried. Her kindness touched our hearts. We knew then, that to her, we were more than names on a chart. We were people with lives in the balance. When she learned that we had three young children at home, she told us about the Angel Foundation, a resource that helps families with a parent who has cancer.

Oncologist

Your oncologist is the person who pulls everything together. He or she had a goal of helping you live long and well. Communicating well with your oncology doctor. He or she will do their best to help you achieve your goals.

oncology care team

Palliative Care Specialist

This may be a doctor, a nurse, or a physician assistant. The palliative care specialist works with other members of your oncology care team to treat and symptoms of your cancer and the side effects of its treatment. They are especially skilled at pain control.

Oncology/Infusion Nurse

Asks intake questions about how you’ve been feeling since your last visit. It’s very important to tell him/her about any symptoms you’ve experienced, especially any changes. You will be asked to rate your pain on a scale from 1-10. Be honest about your pain so your care team can address it properly.

Tell the nurse about any changes in the medication you’ve been taking as well as any side effects you’ve experienced. Don’t forget about over the counter drugs. Something as simple as antacid can have interactions with your cancer medications. The medications you are taking also give your doctor clues as to your overall health. For example, if you are taking more pain medications than usual, it may indicate increased pain or the need to change to a more effective pain medication.

An infusion nurse will access your port, which is no easy feat, and they’ll administer chemotherapy. Nurses are trained to watch for side effects and other changes in a patient. I have great admiration for oncology nurses.

Physician Assistant

Physician Assistants do much of the same work that doctors do. In fact, it isn’t uncommon for people to think that a PA is an MD.  Often they will alternate appointments. This gives a patient another set of eyes to assess their health. It also allows the oncologist to see more patients without getting burned out. If you need an unexpected, last minute, appointment, it’s usually easier to get one with a physician assistant.

Every 3 months my husband gets a CT scan. A few days later, he sees his oncologist to talk about the scan results. The two monthly appointments in between scans, he sees a physician assistant. In his case, the PA is also a palliative care specialist. This is particularly helpful because he has a lot of pain.

Oncology Pharmacist

Oncology pharmacists are pharmacists who specialize in medications used to treat cancer. They understand how various drugs interact with one another as well as how to deal with the side effects of your cancer treatment. Oncology pharmacists regularly talk with patients about their treatment. They educate patients and caregivers about the cancer treatment and answer any questions they may have about their medications.

Chaplain

The chaplain in the cancer center does more than meets the eye. He or she is available to talk withOncology Care team patients and their family about spiritual matters. Having cancer makes faith a priority, even for people who haven’t given it much thought before. Chaplains who work in cancer centers are very good at supporting people when they are faced with life and death matters.

They not only serve the patients directly but also give counsel to the doctors and nurses who work in one of the most difficult medical fields. They are available to pray with patients and staff alike. Even though they will have a particular faith background, they are a valuable spiritual resource for patients and families from all faith traditions (or no faith tradition at all).

Oncology Social Worker

An oncology social worker is an expert in helping patients cope with life as a cancer patient. They can also help caregivers and the patient’s children. They can tell you about appropriate support groups as well as financial resources. If you have a non-medical question about living with cancer, an oncology social worker is a person you will want to talk to.

Psychiatrists in the Oncology Center

Living with cancer takes a tremendous toll on a patient, not only physically, but also emotionally and psychologically. Psychiatrists in the oncology center help patients with stress management, cognitive behavior therapy, pain management techniques, and counseling to maximize the quality of life for the patient and his or her loved ones.

Hematologist-Oncologist

This is a physician who specializes in the diagnosis and treatment of blood diseases including leukemia, lymphoma, hemophilia, anemia, and sickle cell disease. Your oncologist may also refer you to a hematologist if the effects of your cancer treatment are adversely affecting your blood health.

Pathologist

You’ll probably never meet your pathologist, but they are an essential part of your oncology care team. Pathologists are doctors. They are the people who look at cells, tissue, and organs, that are biopsied to determine whether a patient has cancer. Pathologists make the final diagnosis of cancer. They also look for mutations that impact what type of treatment a patient is given.

Registered Dietitian

While a lot of people tell their family and friends how they should and shouldn’t eat, a registered dietitian makes nutritional recommendations to patients based on science and the patient’s individual needs.

One of the first appointments Dan had after being diagnosed with cancer was with the dietitian who worked with the oncology department. She dispelled the myths of cancer nutrition and told us the hard facts. (1) 20% of people who die of cancer actually die of malnutrition. (2) She told us that best predictor of survival was maintaining or gaining weight. “If you feel like eating a Cinnabon, eat a Cinnabon,” she said. This ran contrary to what we had heard from a lot of people. She explained nutrition from the perspective of oncology. She said that Dan needed to concentrate on two things. He needed to keep his calories up and eat twice as much protein. That advice has served him well.

Ways to Offer Help when a Friend has Cancer

Radiologist

Radiologists are doctors who specialize in reading z-rays, scan, and other imaging technology. They help in the diagnosis process. You will have regular imaging throughout your cancer treatment, as well as follow-up scans to make sure you are still cancer free. The radiologist will read all those scans. Even though the radiologist is an important part of your oncology team, you will likely never meet him or her.

There is one exception. Interventional radiologists perform non-surgical minimally-invasive image-guided procedures. When my husband had the Gamma Knife procedure done to remove a brain metastasis, there was a radiologist as part of the team and we met him.

Physical/Occupational Therapists

These amazing people help cancer patients live as normally as possible. They teach you how to regain strength, balance, and skills that cancer may have tried to steal. They help with everything from therapeutic exercise to using tools that make life easier.

Dermatologist

Chemotherapy and radiation often have adverse effects on a patient’s skin. EGFR targeted therapies cause rashes and skin eruptions. Dermatologists will assess and treat these side effects. They also make recommendations for skin care in survivorship. In a survey of cancer patients, 84% said they had never been referred to a dermatologist and over half would have felt better if they had been. (3)

Surgeon

Before modern medicine, surgery was the only cancer treatment that had a chance of success. Surgeons work with your oncologist in a variety of ways. They often take the tissue sample for biopsies. They help diagnose and stage cancer. Surgeons help treat cancer when surgery is an option.

These are just some of the people who are part of your oncology team. There are so many people who affect your experience as a cancer patient. Often these team members overlap in what they do. They work together to give you the best, most complete care possible.

I am grateful to the people who have been a part of Dan’s care team over the years. They are special people who have always made us feel like he is in good hands.

What Are YOUR Thoughts?

I’d love to hear in the comment section, below. I appreciate my readers as well as the writing community. To show that appreciation, I use Comment Luv. Just leave a comment below and your latest post will get a link next to it. Thank you!

ABOUT HEATHER ERICKSONThe Erickson Family

In 2012 doctors diagnosed my husband, Dan, with stage IV lung cancer. Since then, our family has been learning what it means to face cancer. I’ve focused my writing and speaking on helping cancer patients and their families advocate for themselves and live life to the fullest, in spite of their illness. My goal is to help people face cancer with grace. My books are available at Amazon.com:

The Memory Maker’s Journal 

Facing Cancer as a Friend: How to Support Someone Who Has Cancer

Facing Cancer as a Parent: Helping Your Children Cope with Your Cancer

I also blog at Heather Erickson Author/Writer/Speaker

Footnotes:

  1. http://www.cancercenter.com/community/nutritional-support/tab/preventing-malnutrition/
  2. http://www.nbcnews.com/id/30812433/ns/health-cancer/t/push-fight-malnutrition-cancer-patients/
  3. http://www.mdmag.com/contributor/beth-mclellan-md-/2015/07/5-ways-oncologists-and-dermatologists-can-work-together-to-improve-cancer-care-

Neuropathy

Neuropathy is a set of symptoms affecting the nervous system. Peripheral neuropathy affects your nerves, or those on the periphery of your body: Skin, fingers, toes, etc. Chemotherapy-induced peripheral neuropathy is when these symptoms are the result of chemotherapy.

Symptoms of Neuropathy

  • Numbness
  • Pain This may be constant, or it may come and go like a sharp, shooting/stabbing pain.
  • Tingling, pins, and needles or electric shock type pain.
  • Muscle cramps
  • Muscle fatigue
  • Burning sensation
  • Lack of dexterity, trouble buttoning shirt etc.
  • Problems with balance
  • Sensitivity to cold/heat
  • Trouble swallowing
  • Blood Pressure changes
  • Decrease in reflexes

Symptoms tend to start farthest away from your head (toes and feet) and move closer to your head over time. They are usually bilateral, affecting both sides of the body at the same time.

If Neuropathy Comes Knocking

If you notice symptoms of neuropathy (or any change in your health and well-being) tell your oncologist immediately. They need to know as soon as possible how your body is reacting to the treatment you are on. Then, your doctor can make any necessary changes in your treatment plan and address your concerns when side effects are more easily managed.

Also, see a neurologist to rule out any underlying neurological problems that might be causing your symptoms. If you haven’t had a recent brain MRI, talk to your doctor about getting one.

Consult an orthopedist. They can check your musculoskeletal structure for problems that could be affecting your feet and legs.

Chemotherapy and Neuropathy

Chemotherapy is used to kill cancer cells. It can also affect nerves that connect the spinal cord to the patient’s muscles, skin and internal organs.

Whether a patient develops chemotherapy-induced neuropathy depends on many factors, including the type of chemotherapy used, and at what doses it’s given. And, of course, the individual patient’s health also plays a part.  It can begin at any time after treatment starts and often gets worse as treatment goes on.

Chemotherapy-induced neuropathy may go away after treatment is completed, or it may be a long-term or even permanent problem.

Preventing chemotherapy-induced neuropathy.

Before beginning any treatment plan, discuss the risks of chemotherapy-induced peripheral neuropathy and the ways you can work with your medical team to prevent it.

Is the potential neuropathy from any given treatment usually temporary or is it often permanent?

Find out what side effects to should watch for.

Ask your doctor their preferred way of receiving messages is. Many doctors are moving to electronic charting. Some still prefer to get a phone call.

Your doctor might change the way he or she gives you your chemotherapy. He/she might:

  • Reduce the dose of the chemotherapy
  • Administer smaller doses more frequently
  • Deliver chemotherapy as a slow, non-stop infusion over a longer period of time

Medical Treatments for Chemotherapy-Induced Neuropathy

Oral medications:

  • Steroids (short term)
  • Low dose antidepressants
  • Prescription pain medication (opioids)

Medical Marijuana (in states where it is legal) (1)

Topical Creams:

  • Steroidal creams (short term)
  • Lidocaine, which is a numbing cream or ointment
  • Capsaicin, which is made from the capsaicin oils of hot peppers

Occupational Therapy

  • To help with fine motor coordination (Buttons and shoelaces etc.)
  • To decrease the risk of falls

Alternative/Complementary Therapies:

Relaxation Techniques:

  • Meditation
  • Visualization
  • Hypnosis
  • Biofeedback

Research has proven that these, and other relaxation techniques, can greatly reduce pain levels in patients. (2)

For more information, read this article from the Foundation for Peripheral Neuropathy. (3)

 

acupuncture for neuropathyAcupuncture

Research has shown that Acupuncture improves nerve conduction in peripheral neuropathy. (5) Be sure to use a licensed acupuncture specialist. More and more chiropractors are learning acupuncture.

I have been receiving acupuncture at a pain clinic for the pain in my feet. I was skeptical of the practice until I experienced its benefits.

My doctor told me what led him to become licensed in acupuncture. His father in law is a veterinarian. One day he said, “Grant, I want to show you something.” He then proceeded to perform acupuncture on a dog who was suffering from arthritis in her hips. After the acupuncture session was over, the dog could walk with no problems. “There’s no placebo effect in animals,” he pointed out. Seeing was believing, and my doctor went back to school to learn an additional way of helping his patients.

Manual Lymph Drainage

Because manual lymph drainage is contraindicated in the presence of metastatic cancer, and its benefits have not been well established, I will not go into detail on this alternative treatment for neuropathy other than to say that the reason this is potentially harmful is because of the way the lymphatic system can be used to transport cancer cells around the body with metastasis. You certainly don’t want to help the process out. If you don’t have metastatic cancer and would like to investigate further, check with a reputable massage therapist.

ExercisePool therapy for neuropathy

Exercise to improve your circulation. Consider pool therapy or swimming if pain makes “regular” exercise or walking too painful. Check with your doctor to make sure that the pool is safe for you. Some people need to avoid the chlorinated water because of its effects on their skin. There is also an increased risk of infection. Your doctor will be able to help you weigh the benefits and risks.

Some Additional Suggestions

Avoid alcohol, since it can cause and/or make nerve damage worse.

If you have neuropathy in your fingers, be careful when handling sharp objects. Wear protective gloves while gardening or doing other chores which could damage your hands.

Likewise, if you have neuropathy in your feet, avoid walking barefoot or in open-toed shoes. If the neuropathy in your feet affects your balance, or you stumble on occasion because of it, use supportive aids(handrails, cane, walker). Have grab bars installed in your bathroom.

Avoid extreme temperatures. Check the temperature that your hot water heater is set on so that you don’t scald yourself accidentally.

Eat a high fiber diet if constipation is a problem. Not only can neuropathy affect your bowel habits, but so can the medications you take to manage pain.

What are YOUR thoughts?

I’d love to hear in the comment section, below. I appreciate my readers as well as the writing community. To show that appreciation, I use Comment Luv. Just leave a comment below and your latest post will get a link next to it. Thank you!

ABOUT HEATHER ERICKSON

In 2012 doctors diagnosed my husband, Dan, with stage IV lung cancer. Since then, our family has been learning what it means to face cancer. I’ve focused my writing and speaking on helping cancer patients and their families advocate for themselves and live life to the fullest, in spite of their illness. My goal is to help people face cancer with grace.

My book Facing Cancer as a Friend: How to Support Someone Who Has Cancer, is available on Amazon.com

I also blog at Heather Erickson Author/Writer/Speaker

Footnotes:

  1. The Neuropathy Journal, Treating Neuropathic Pain with Medical Marijuana. Morrow, David
  2. Western Journal of Medicine. 2001 Oct; 175(4): 269–272. Pub Med.gov
  3. The Foundation for Peripheral Neuropathy. https://www.foundationforpn.org/living-well/integrative-therapies/mind-and-body/
  4. Acupuncture treatment improves nerve conduction in peripheral neuropathy. Eur J Neurol. 2007 Mar;14(3):276-81. Pub Med.gov

 

Originally posted 2018-02-12 07:00:39.


palliative care specialist

Have you ever talked with a palliative care specialist? Do you know what they do, or how they could help you with your cancer treatment?

What a palliative care specialist does

“Palliative care is specialized medical care for people with serious illnesses. This type of care is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness-whatever the diagnosis.

“The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a team of doctors, nurses, and other specialists who work with a patient’s other doctors to provide an extra layer of support. Palliative care is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment.”[1]

Some issues that a palliative care specialist can help resolve

  • Anxiety
  • Shortness of breath/cough
  • Neuropathy
  • Weight gain/loss
  • Stress/depression
  • Nausea
  • Memory problems
  • Fatigue

How do we reconcile different goals?

Sometimes at the outset of care, a patient might feel like their goals aren’t being addressed, or that their goals are at offs with those of their doctor.

Here’s an example of 2 different points of view:

  • A doctor sees lung cancer as the problem.
  • A patient sees shortness of breath and fatigue as the problem.

Doctors are focused on healing the sick. That’s their purpose, and they usually do an exceptional job of fulfilling it. Unfortunately, they may fall short when it comes to addressing pain and symptoms (person-centered care).

This is where palliative care shines.  You can still receive treatment for cancer, and as you do, a palliative care specialist can work with your doctor to reduce the impact that symptoms and side effects have on your day to day life.

The goal of palliative care

The goal of palliative care is to improve quality of life for the patient and their family. This happens using a team approach. Doctors, nurses, specialists, chaplains, caregivers, etc. all form a team which works together to help patients:

  • Cure, or halt disease
  • Maintain quality of life
  • Coordinate care
  • Make informed decisions

This can begin at any stage of the illness.

Palliative care can, and should, be provided at any stage of the lung cancer journey. Treating symptoms and side effects is as important as treating the cancer itself. By reporting them as soon as they occur, your doctor can address them early on. You are then more likely to continue to get the care you need throughout the course of your treatment and beyond. The aftermath of treatment must also be considered and treated. This contributes to your overall quality of life.

But, few people understand what a palliative care specialist does…

In a 2011 national survey, the Center to Advance Palliative Care, American Cancer Society, and the American Cancer Society Cancer Action Network found that 70% of consumers weren’t at all knowledgeable about palliative care. Yet, once informed about palliative care and its benefits, 92% of consumers would consider palliative care for their families and believe that patients nationwide should have access to it.

…Including physicians.

Unfortunately, physicians tend to equate palliative care with hospice and only refer patients to this important service for end-of-life care.

American Society of Clinical Oncology believes cancer patients should have early access to palliative care. They even updated their guidelines in 2017, to reflect this:

“Patients with advanced cancer, whether inpatient or outpatient, should receive dedicated palliative care services, early in the disease course, concurrent with active treatment.”

Doctors should refer patients with advanced cancer to a palliative care specialist for the optimal treatment of issues that arise during the course of treatment. Palliative care relieves pain and symptoms, reduces hospitalizations, ER visits and unnecessary tests, and also increase the length of a patient’s survival. Oncology and palliative care specialists can (and should) collaborate at any stage of the disease to extend survival and contribute to a high quality of life.

Palliative care is not hospice.

Hospice patients are referred based on a prognosis of 6 months or less. Palliative care has nothing to do with your prognosis. It is need-based, based on need and suffering. Talk to your oncologist to increase coordination of care with a palliative care specialist.  If your oncologist is resistant to palliative care, talk to a palliative care specialist yourself. They can reach out to your oncologist to explain how palliative can increase the amount of time the patient can continue with treatment. This might just help y9our oncologist improve the level of care for other patients, as well!

Palliative care can be essential beyond treatment for lingering issues such as neuropathy and immunotherapy-related issues.

Another myth about palliative care

Palliative care is covered by insurance, and you can continue curative treatment while receiving these services. There are even home care specialists who deliver palliative care. They are also experts at monitoring and safely dispensing opioids. So if you are dealing with cancer-related pain which requires opioids, you can get more knowledgeable help. Give it a try and see what you think.

Palliative care specialists see the person beyond the patient, beyond the disease.

For more resources on palliative care, check out www.getpalliativecare.org.

What Are YOUR Thoughts?

I’d love to hear in the comment section, below. I appreciate my readers as well as the writing community. To show that appreciation, I use Comment Luv. Just leave a comment below and your latest post will get a link next to it. Thank you!

ABOUT HEATHER ERICKSONThe Erickson Family

In 2012 doctors diagnosed my husband, Dan, with stage IV lung cancer. Since then, our family has been learning what it means to face cancer. I’ve focused my writing and speaking on helping cancer patients and their families advocate for themselves and live life to the fullest, in spite of their illness. My goal is to help people face cancer with grace. My books are available at Amazon.com:

The Memory Maker’s Journal 

Facing Cancer as a Friend: How to Support Someone Who Has Cancer

Facing Cancer as a Parent: Helping Your Children Cope with Your Cancer

I also blog at Heather Erickson Author/Writer/Speaker

Footnotes:

[1] Public Opinion Research on Palliative Care. Research Commissioned by the Center to Advance Palliative Care, 2011, pp. 1–15, Public Opinion Research on Palliative Care.


What if

Cancer can often feel like a roll of the dice. The unknown can be the hardest part of cancer and its treatment. This causes patients and their families to often ask, what if. One year into his treatment plan, Dan’s doctor declared that Dan was NED (having no evidence of disease). This is a term used to describe what people think of as a state of remission (in certain types of cancer). It is a wonderful feeling to be NED. Still, because Dan’s cancer was advanced and ultimately terminal, we had been told that it was only temporary and that at some point Dan’s cancer would rear its ugly head again.

What If

One thing that surprised me was how uneasy I felt, even during that time. His scans were now farther apart. Instead of being every 6 weeks, they were every 3 months. What if cancer began to progress just after a scan, and then grew, unchecked, for 3 months? What if? That question plagued me.

We were counting on God to give us the time we needed as a family, and we were counting on people to pray for us, so I also feared that because Dan was doing well, people would forget that we still needed prayer. And, at certain times, like when Dan was about to have a scan, or he just wasn’t feeling quite right, a what if would cross our minds.

  • What has happened since the last scan? What if the cancer has progressed?
  • Will we be able to stay the course, or will we suddenly have to learn about a new treatment? What if that treatment doesn’t work?
  • If there is a new treatment, what will the new side-effects be like? What if the treatment is really hard?
  • What if the treatment involves infusions? Are our schedule and routine going to go through another upheaval?
  • Will there be another option when this one runs out (Because it always stops working at some point)?

Kids worry, too

Our kids worried too. In the back of their minds was their own “what if” list. It was especially bad just before a scan.

While most young children, will be able to quickly move beyond the cancer once treatment is done and you’re feeling better, some children worry more than others and may need continued support.

Teens may avoid talking openly about their fears or concerns. It is often easier for teens to discuss their fears with someone outside the family. You can see if they would like you to coordinate a time for them to talk with an adult they trust or can feel at ease with.

Kids tend to see things just as they are. Once you complete your treatment, life goes back to normal and you begin to look like your “old self” again, they will probably think that the illness is over. You might want to tell your children that everything will be fine, but it’s best to let some time pass before you give them any assurances. Unfortunately, cancer can recur or metastasize (spread to another part of the body).

Dealing with the question What if

 

Dealing with feelings of uncertainty

You should be honest about your feelings of uncertainty—with yourself and with your kids. They may be experiencing some of the same thoughts that you are. Be honest about the fact that if the cancer returns, it will mean more treatment, of some sort.

During this time, you can—and should, be happy. When a treatment is ended, there is plenty to be happy about, and you can share those things together. Maybe you’re looking forward to not feeling nauseous anymore. If you lost your hair due to treatment, you can enjoy seeing it return (maybe even different from before). Enjoy the moment, even if you don’t know what to expect in the future.

Our Story

When you have a “treatable” cancer and you respond to the treatment there is every reason to hope. My husband, Dan was diagnosed with stage IV, metastatic, lung cancer. We were told that his cancer was terminal and that we were buying time. Even though it looked hopeless, medically, we had reason to hope. Our hope is in the Lord, Jesus Christ. He has been our strength throughout this journey. I am grateful for that hope. We have had over five amazing years of memories, to date, that we might have otherwise missed.

Dan’s most recent scan shows that his cancer is again progressing. That means starting a difficult course of treatment, again, and worries about whether or not it will work—and for how long. It’s during these times that I remind myself, “Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Let the day’s own trouble be sufficient for the day.” Matthew 6:34 RSV (1)

WHAT ARE YOUR THOUGHTS?

I’d love to hear in the comment section, below. I appreciate my readers as well as the writing community. To show that appreciation, I use Comment Luv. Just leave a comment below and your latest post will get a link next to it. Thank you!

ABOUT HEATHER ERICKSON

In 2012 doctors diagnosed my husband, Dan, with stage IV lung cancer. Since then, our family has been learning what it means to face cancer. I’ve focused my writing and speaking on helping cancer patients and their families advocate for themselves and live life to the fullest, in spite of their illness. My goal is to help people face cancer with grace.

My book Facing Cancer as a Friend: How to Support Someone Who Has Cancer, is available on Amazon.com

I also blog at Heather Erickson Author/Writer/Speaker

Footnotes:

  1.  from the Revised Standard Version of the Bible, copyright © 1946, 1952, and 1971 the Division of Christian Education of the National Council of the Churches of Christ in the United States of America. Used by permission. All rights reserved.

Originally posted 2018-02-05 07:00:45.


Hospice and palliative care

The battles of the war against cancer are waged, daily within the bodies of patients young and old, wealthy and poor. There we have made great strides. In 2014, “UK death rates for breast, bowel, lung and prostate cancer combined are down by almost a third in 20 years.” (1) Yet, like any war, the casualties at the hands of this disease are great. That’s when hospice and palliative care enter the picture.

Curing vs. Healing

There comes a time when we need to switch from curative treatment to healing efforts. We can heal, even as we die. There can be healing of relationships, spiritual healing, letting go of the things that never should have been clung to in the first place. Hospice and palliative care services enable patients and families to heal.

There’s always hope.

People often start out their treatment plan with big hopes. Over the course of a terminal illness, those hopes can be dashed, sometimes over and over again. It can be discouraging for patients and their loved ones. Even if they are disappointed, there’s still hope. It just changes. They go from hoping for a cure to hoping for a quality of life. They hope for time. And then they hope for an end to life that isn’t devastating. They hope they can say the things they need so much to say. They’re hoping that when things get difficult, They won’t be alone. They’ll have people they can count on and trust.

Your Medical Team

You need to trust your medical team. If you don’t–get a new one.
As you begin the process of dying, your doctor may tell you that the time is near. Yet, you might not think of yourself as dying. It’s similar to how we don’t see ourselves getting old until crow’s feet are surrounding the eyes that are staring back at us in the mirror.

While you can’t predict exactly when you’ll die, your doctor has seen it countless times before, and as your cancer worsens, can give you an idea of when it may happen. It’s important to trust your medical team so that you can make the appropriate plans. At the same time, focus on and making the most of each day, one day at a time. Stay involved with life, doing the things that you love, for as long as you can.

What is Palliative Care?

Palliative Care focuses on providing relief from the symptoms and stress of a serious illness. The goal is to improve the quality of life for both the patient and the family. Your medical team should talk to you about this at the very beginning of your cancer journey. It is helpful for all oncology patients, not just those that are terminally ill.

What is Hospice?

Many people think that hospice is a place, but it’s not. It’s actually a collaborative approach to providing care. You receive these services wherever you are living, whether at home, a nursing home, or a facility that specializes in the care of hospice patients.

Hospice and palliative care combined is the newest recognized specialty, receiving official recognition by the American Board of Medical Specialties as recently as 2006.

While receiving hospice and palliative care services, you will have a medical team that’ll help you and your family manage any problems or issues related to your terminal illness. This team may include any of the following:

  • Doctors
  • Nurses
  • Home health aides
  • Massage therapists
  • Pharmacists
  • Nutritionists
  • Social workers
  • Physical and/or occupational therapists
  • Various types of counselors
  • Clergy who specialize in end of life care

This team is created specifically for your needs and can include as few or as many members as you want and need.

What You May Not Know About Hospice and Palliative Care

Hospice and palliative care services are covered by Medicare and at least in part by most insurance plans. Once you are part of a hospice program, you can leave the program at any time. You can always make adjustments to the services you receive.

In the past, people thought of hospice and palliative care services as “the end.” They dreaded even the idea. The fact is, in a recent study, terminally ill patients were found to have lived longer on hospice, than those who did not use hospice services.(1)

One recent change to hospice care is that in some circumstances, you can still receive curative treatment for your illness. In the past, this wasn’t allowed. There are also transitional hospice and palliative care programs where you receive palliative care until it is time to receive hospice. This gives patients a seamless transition in their services.

You aren’t limited to a set amount of time on hospice. While the program is meant to be short-term (under 6 months), you can be reassessed for re-enrollment if you exceed that amount of time. You can also go off of hospice for any reason, and later receive services again.

Melissa Turgeon from the Angel Foundation made plaster casts of Dan’s hands. Photo by Jim Bovin.

Our Story

My husband enrolled in a transitional palliative care to hospice program in late 2015. It gave me as his wife and caregiver a great feeling of comfort. We had access to medical care 24/7. This helped me to rest easy knowing that even in the middle of the night, I could call a nurse out to our home, if necessary.

We requested that an oncology social worker come to our home and meet with our daughters.  She was able to help them work through their feelings and anxieties about their dad’s illness. She gave them some coloring journals that were made especially for children who had a parent with cancer. This helped them a lot!

Thanks to a new treatment,  his condition stabilized within a couple of months, and he was able to end his hospice services. When the time comes that he needs them again, he will resume.

The Sooner the Better

It is better to start hospice services sooner rather than later. Half of all hospice patients receive less than 3 weeks of care, while over 35% receive services for less than 7 days.(2) This isn’t long enough to form a good, trusting relationship with your care team.

You will get physical support when you enter hospice, but if you enter too late, you can miss out on spiritual, emotional, and relational healing.

When making the decision about whether or not to look into hospice services, consider the needs of your family along with your own. Hospice addresses the needs of not only the patient but their family members as well. People who wait too long to get hospice care are missing out on valuable resources available to them and their family members. For a minimum of one year after the death of a loved one, family members are eligible to receive bereavement care and counseling through the hospice program.

Chaplains

Even if you aren’t religious, or ascribe to a different faith tradition, it is extremely helpful to spend time with a chaplain. They may be available where you receive your cancer treatment or through your faith community. Hospitals almost always have a chaplain on staff. They’re knowledgeable and experienced in helping people process the end of their time here on earth.

Our Story

Hospice and palliative care are especially helpful for patients who have young children. When Dan was extremely ill, the transitional palliative care to hospice program sent a social worker to our home to help our daughters through the difficult time. She gave our daughters specially designed coloring books for kids who had a parent with a terminal illness. These were incredibly helpful for the girls as they sorted out their emotions and fears. The social worker talked to them and answered their questions. She helped them to feel safe in an incredibly frightening time.

Is now a good time to look into hospice or palliative care services?

Having professionals who specialize in helping patients as they near the end of life can save you valuable time. Don’t ignore the valuable resources that are within your grasp. If your healthcare team hasn’t given you information about services that can help you at this time, tell them that you need to know who would be helpful to talk to so you can make plans for yourself and your family.

WHAT ARE YOUR THOUGHTS?

I’d love to hear in the comment section, below. I appreciate my readers as well as the writing community. To show that appreciation, I use Comment Luv. Just leave a comment below and your latest post will get a link next to it. Thank you!

ABOUT HEATHER ERICKSON

In 2012 doctors diagnosed my husband, Dan, with stage IV lung cancer. Since then, our family has been learning what it means to face cancer. I’ve focused my writing and speaking on helping cancer patients and their families advocate for themselves and live life to the fullest, in spite of their illness. My goal is to help people face cancer with grace.

My book Facing Cancer as a Friend: How to Support Someone Who Has Cancer, is available on Amazon.com

I also blog at Heather Erickson Author/Writer/Speaker

Footnotes:

  1. Journal of Pain and Symptom Management Vol. 33 No. 3 March 2007. Comparing Hospice and Nonhospice Patient Survival Among Patients Who Die Within a Three-Year Window. Stephen R. Connor, PhD, Bruce Pyenson, FSA, MAAA, Kathryn Fitch, RN, MA, MEd, Carol Spence, RN, MS, and Kosuke Iwasaki, FIAJ, MAAA, National Hospice and Palliative Care Organization (S.R.C., C.S.), Alexandria, Virginia;
    and Milliman, Inc. (B.P., K.F., K.I.), New York, New York, USA
  2. NHPCO Facts and Figures: Hospice Care in America. Alexandria, VA: National Hospice and Palliative Care Organization, September 2015

Originally posted 2018-05-21 07:00:21.


No two cancers are alike.

I recently read an article about John McCain and Jimmy Carter.[1]  Apparently, a lot of people wonder why their cancers could have had such different outcomes. The thinking behind this is something most cancer patients encounter throughout their journey. People often don’t realize that no two cancers are alike. Today I’ll share some of the reasons for this, and what it means for cancer patients and their loved ones.

Where cancer originates is what kind of cancer the patient has.

One of the reasons no two cancers are alike is because they originate in different areas of the body. For example, Jimmy Carter was diagnosed with melanoma. This is a dangerous form of skin cancer. John McCain was diagnosed with glioblastoma. A glioblastoma is a dangerous form of cancer in the brain. Jimmy Carter’s melanoma at one point metastasized (or moved) to his brain, but it was still melanoma.

My husband Dan was diagnosed with non-small cell lung cancer. By the time they found it, it was in his lymphatic system. There was actually very little of it in his lungs because it metastasized so quickly. It was too late to cut it out. Even though it was in his lymph nodes when they found it, they found lung cancer cells there. At one point, like Jimmy Carter’s melanoma, it metastasized to his brain, but it was still the lung cancer cells that were in that brain tumor.

Why does this matter?

It’s important to realize that no two cancers are alike because they are treated differently. Some forms of cancer have more treatment options.  Some of these options have been better researched because there are more research dollars being directed at certain cancers than others. Melanoma, the cancer that metastasized to Carter’s brain, was treatable with a new immunotherapy. Glioblastoma, the form of cancer McCain suffered from, doesn’t respond to immunotherapy, and is extremely difficult to treat, especially when advanced.

Some cancers are curable, even at stage IV.

Different cancers have different staging systems.  Even when a system sounds the same (for example, “stage I, II, III, or IV”) the stages don’t necessarily mean the same thing. Lymphoma is a cancer that can be cured, even at stage IV.

“Stage III-IV lymphomas are common, still very treatable, and often curable, depending on the NHL subtype. Stage III and stage IV are now considered a single category because they have the same treatment and prognosis.” [2]

When someone has seen or experienced remission and even a cure of one of these “curable” cancers, it can be difficult to understand the devastation someone feels when they are told their cancer is “incurable.”

No two cancers are alike because of mutations

For a long time, lung cancer patients were relegated to “ugly step-stepsister” status; due to the impression most people have that lung cancer patients deserve to get cancer because cancer is a smoker’s disease, caused by bad behavior.

First, let me say that no one deserves cancer. Having seen this brutal disease up close, I wouldn’t wish it on anyone, nor turn away and cluck my tongue if someone got it due to an “unhealthy lifestyle.”

The medical community is learning that more people get lung cancer who have never smoked (or haven’t in years) than they realized.

We were very fortunate to learn that Dan had an EGFR mutation. This is a mutation which set off a firestorm of research in the lung cancer world. With the possibilities that mutations present, they see hope for fighting this disease. So, more research dollars are being directed toward the least researched cancer and more treatment options are unfolding for lung cancer patients.

Thanks to this research, and new drugs, Dan has lived for 6 years with stage IV lung cancer. In 2012, he was given 6 months to live.

Asking for Prayer

No two cancers are alike because no two patients are alike

There are so many variations between patients. One particular treatment can work great for one patient and terrible in another. Some patients tolerate a treatment while others become ill to the point of death. Younger patients tend to do better than older patients on cancer treatment. Patients who have other underlying illnesses have a harder time than patients who start out healthier.

Support systems matter

No two cancers are alike because different patients have different levels of support. A strong support system can have a profound impact on both patients and caregivers.[3]  They are more likely to be compliant with treatment and understand their doctor’s recommendations. A good support system also helps combat depression that so commonly occurs in cancer patients.

In conclusion…

It’s natural to wonder why one person can live with cancer for a long time while another succumbs to their illness. Hopefully, this post has shed some light on the variables that impact the outcome of a patient’s disease. It’s important to be aware that a person’s experience with their cancer is as individual as they are.

What Are YOUR Thoughts?

I’d love to hear in the comment section, below. I appreciate my readers as well as the writing community. To show that appreciation, I use Comment Luv. Just leave a comment below and your latest post will get a link next to it. Thank you!

ABOUT HEATHER ERICKSONThe Erickson Family

In 2012 doctors diagnosed my husband, Dan, with stage IV lung cancer. Since then, our family has been learning what it means to face cancer. I’ve focused my writing and speaking on helping cancer patients and their families advocate for themselves and live life to the fullest, in spite of their illness. My goal is to help people face cancer with grace.

 

My books are available at Amazon.com:

The Memory Maker’s Journal 

Facing Cancer as a Friend: How to Support Someone Who Has Cancer

Facing Cancer as a Parent: Helping Your Children Cope with Your Cancer

I also blog at Heather Erickson Author/Writer/Speaker

Footnotes:

[1] Sisson, Paul. “Why Did Carter and McCain Have Such Different Brain Tumor Results?” Sandiegouniontribune.com, The San Diego Union-Tribune, 28 Aug. 2018, www.sandiegouniontribune.com/news/health/sd-no-cancer-mccain-20180824-story.html.

[2] “Lymphoma – Non-Hodgkin – Stages.” Cancer.Net, American Society of Clinical Oncology, 2 July 2018, www.cancer.net/cancer-types/lymphoma-non-hodgkin/stages.

[3] “Statistics Show the Importance of Psychosocial Support for Those Impacted by Cancer.” Imerman Angels, Imerman Angels, imermanangels.org/psychosocial/.

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