Category Archives: Patients


Staging Your Cancer

Doctors stage a patient’s cancer at the time of diagnosis. Doctors determine the extent of your cancer, such as how large the tumor is, and if it has spread, using x-rays, lab tests, and other tests or procedures.  This is called the “stage” of your cancer. By staging cancer, your doctor can determine among other things, how aggressive the cancer is and how aggressive the treatment will have to be.  Today we will look at how these staging systems work.

Most staging systems include information about (1):

  • Where the tumor is located in the body
  • The cell type (such as adenocarcinoma or squamous cell carcinoma)
  • The size of the tumor
  • Whether cancer has spread to nearby lymph nodes
  • Whether cancer has spread to a different part of the body
  • Tumor grade, which refers to how abnormal the cancer cells look and how likely the tumor is to grow and spread

The most commonly used system of staging is the TNM System, usually seen on a pathology report.

What is the TNM System?

T stands for tumor.

Numbers (and sometimes the letter X) accompany the T.

X means the main tumor can’t be measured. O means that it can’t be found. Numbers 1-4 indicate the size and extent of the primary tumor. The higher the number, the larger the tumor, and the more it is invading nearby tissue. These numbers are sometimes broken down further, to give a more precise picture of how extensive the cancer is. For example, T2a and T2b. A would be closer to T2 and b would be closer to T3.

N stands for regional lymph nodes.

The number (or the letter X) accompanying the N indicates the number of nearby nodes that are cancerous.

X means that cancer in nearby nodes can’t be measured. 0 means there is no cancer in the nearby lymph nodes. Numbers 1-3 indicate the number of cancerous lymph nodes, and where they are. The higher the number, the more lymph nodes there are that contain cancer. Localized cancer is limited to the location where it started, with no indication that it has spread. Regional cancer has spread to nearby lymph nodes, tissues, or organs.

M stands for metastasis.

There are three possible letters/numbers that can accompany the M. X indicates that metastasis can’t be measured. 0 means that cancer hasn’t spread to other parts of the body. 1 means that it has spread to other parts of the body. When cancer is described as “distant,” it has spread to distant parts of the body.

From this TNM staging system, doctors derive the more commonly known…

Stages I to IV

  • Stage 0 means that abnormal cells are present but haven’t spread. Doctors call this, “in situ,” or CIS. CIS isn’t cancer but could become cancer.
  • Stage I, II, and III mean that cancer is present. The higher the number, the greater the concern. Doctors assess the size of the cancer and how invasively it has spread into nearby tissue.
  • Stage IV is cancer that has spread to distant parts of the body.

The doctor said Dan’s cancer was at least stage IIIb. This was based on his tumor and lymph nodes. But was he stage IV? To find that out, doctors ordered a PET scan. It showed that cancer had crossed his thoracic region and was, therefore, distant. That made it stage IV.

Lymphoma

Doctors stage lymphoma using a different system. They look at which lymph node regions are affected, and how many are affected. Again, as the number of the stage increases so does the extent of the cancer’s effect on the patient. Progressive or refractory lymphoma is when cancer continues to grow or spread despite treatment. When doctors treat lymphoma successfully and then it returns, they call it recurrent or relapsed lymphoma. (2)

Leukemia

Leukemia uses a completely different staging system known as the Rai staging system. The Rai system takes several things into consideration, including whether there are high levels of lymphocytes in the blood, also known as lymphocytosis. Does the patient have enlarged lymph nodes or lymphadenopathy? Is the patient’s spleen enlarged? This is called splenomegaly. Does the patient have anemia or low red blood cell counts? Are the patient’s platelets low, also known as thrombocytopenia? Is the patient’s liver enlarged? This is called hepatomegaly.

All stages of the Rai symptom include lymphocytosis (high levels of lymphocytes). Stage:

  • 0 …means that there is lymphocytosis, but no other staging conditions present.
  • I …is when lymphadenopathy accompanies lymphocytosis.
  • II …adds an enlarged spleen and/or liver, and possibly lymphadenopathy, as well.
  • III …includes anemia, and possibly lymphadenopathy and/or enlarged spleen and/or liver.
  • IV …includes thrombocytopenia (low levels of platelets) and possibly the other symptoms.

To make things even more complicated, European doctors use a completely different system known as Binet classification. Since I am writing in the United States, I won’t go into that system. (3)

Brain and Spinal Cord Tumors

Cancers of the brain and spinal cord tumors do not have a formal staging system. That’s because these kinds of tumors rarely spread to other parts of the body. This risk with these cancers is their effect on the brain and central nervous system. (4)

The Stage Stays the Same

The stage doesn’t change, even though the cancer might. Doctors refer to cancer by the stage it was given at diagnosis. It doesn’t matter if your cancer has improved due to successful treatment, or if it gets worse and spreads. If it was stage III, in the beginning, it’s still stage III after it has metastasized. Doctors add new information to the original stage over time as the cancer changes.

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 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

The Erickson Family

Footnotes:

  1. National Cancer Institute, Diagnosis, and Staging. Staging.
  2. Cancer.Net Non-Hodgkin‘s Lymphoma Stages
  3. Cancer.Net Leukemia Stages
  4. Baylor Scott and White Health, The Stages of Brain and Spinal Cord Cancer

Originally posted 2018-08-13 07:00:20.


survive the holidays

Surviving the holidays can be difficult when you or someone you love is literally trying to survive the holidays. This almost always means the celebration will look different. I’ve put together a few thoughts and tips to give you a leg up.

To survive the holidays you must first accept that things will be different.

You won’t be participating in the cookie exchange or Christmas caroling. Things that were once fun, are in this new reality, exhausting. Even if you do have the energy to do them, they may zap your reserves so that you’re left burned out. One of the best things you can do is to recognize that the holidays will look different this year—maybe from now on. That’s okay. Change is a part of life even when cancer isn’t. It stinks that cancer is the reason for this change, but accepting it will make the holidays much easier to enjoy.

To survive the holidays you must prioritize

On your quest to survive the holidays this year, make a list of everything you would like to do. This puts it all in one place. Now, pull out your calendar. Get a good grasp on what you are already obligated to do in the next month. Is there anything you can cancel?

What can you add? Don’t add it yet. Just get the vision of what you have to work with in regards to your time. Think about how you feel at the end of each day. Some people still have plenty of energy and others are ready to drop by 6 PM. With all of that in mind, look at that list of things you want to add to your schedule. What can you cut? What should stay? Do the things that you want to keep as part of your holidays fit into your schedule? If so, add them to your calendar.

Also, are there things that don’t feed your soul? This is the year to drop them. You don’t have to put up the lights on the outside of your house this year. You can go for a drive through a neighborhood with especially nice lights to get the twinkle in. A couple of years ago we bought an artificial tree during a great sale. I had always balked at the idea of an artificial tree, but it was getting too hard to deal with a real one each year. We even bought scented sticks that make the tree smell real. Now, we get just as excited setting up our tree as we ever did a real one. This has simplified life.

To survive the holidays, get help

Are there things you can delegate this month? Can a friend take your kids caroling? Can you ask your children to decorate the tree this year (if they are old enough)? Shop online, rather than hitting the stores. All of these things will reduce the amount of energy you have to expand.

Where will the family celebrate?

Often, it’s difficult to go out of town for the holidays when someone in your family has cancer. This might mean having family come to you. That doesn’t mean the work should come to you. If you choose this option, let everyone know that you will need their help. Make sure everyone knows that you can’t have people stay at your house at this time.

Survive the Holidays

What about the meal?

Make a list of thing you need help with, including what you would like for meal items. One way of doing this is to take care of the turkey and ask visitors to bring a side item. A couple of people can bring pies. Even if guests are coming from out of town, they can pick up prebaked pies and sides from the local store. Some people avoid cooking altogether by having the meal catered. In order to organize this, use a mass email or an app like Facebook Messenger to delegate menu items. Have someone bring plastic plates and utensils so there’s minimal clean-up.

If you are going to survive the holidays you have to be honest

Family and friends often have a hard time getting used to the fact that you are dealing with cancer. It can be difficult for them to envision how much this affects your life. This is especially true if the patient is able to carry on as if they are fine, even if it is with great difficulty. This amazing acting job can bite you in the end. Let everyone know that even though it will be harder than usual, you still want to celebrate. You just need some help to make that possible. Hopefully, they will be more than happy to help.

Answer the question

People will ask if there is anything you need help with. So often we say, “No, but thank you for asking.” Why do we do this? They wouldn’t ask if they didn’t want to help. Be prepared to answer the question. Have a list of things you need to have done, ready. What can be delegated?

Know when you need to say “no” so you can survive the holidays.

Are you tired? Lay down. The party can carry on while you rest. Remember to budget your time and space. Have a room that’s just for you. This is important when you go visiting, also. Ask the host if they have a spare room where you can lay down if you need to. Discuss this with them ahead of time so they can be prepared.

Make Memories

This year you can do more than survive the holidays. You can thrive during this festive season. Take lots of pictures and video. Embrace the joy and even the sad feelings that come with this time of year. Be there for one another and give thanks for the good things. Be gentle with one another—and yourself.

What is one thing you plan on doing differently this year? Please share in the comments.

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


Office Visit

There’s a difference between a general physical and a regular office visit. Knowing the difference can save you a lot of frustration when dealing with your doctor.

What’s an office visit?

An office visit is when you will discuss a new or existing health problem. You may get additional tests run or a referral to a specialist who deals with this problem specifically. Your doctor may prescribe a medication to treat the problem or reassess an existing prescription. This is also the type of visit you have when you want to talk about several vague problems that you’re concerned might add up to something more serious.

Office Visit

What’s a general physical?

A physical is all about preventive healthcare. Regular screenings and a general review of your current medical problems and prescriptions will happen at an annual exam. This is the appointment when your doctor will assess things like how your diet and exercise are affecting your health and what you can do to improve these things. You will get any necessary immunizations at this visit. For this reason, patients often schedule their general physical in the fall so they can get the flu shot without scheduling a special appointment. The key thing here is that physicals deal with the well-being of a person who is generally healthy.

Where the confusion comes in

If you go to your doctor for an ear infection, you will be scheduled for an office visit. You can’t expect your doctor to discuss how your diet may be contributing to iron deficiency to any great length at this visit.

Likewise, don’t schedule a physical to save yourself a co-pay (often insurance companies don’t charge a co-pay for a physical) when you want to discuss your chronic headaches.

How often should I get a general physical?

  • Ages 19-21, once every 2-3 yearsPhysical
  • Ages 22-64, once every 1-3 years
  • Over age 65, once a year

Of course, if you have certain risk factors such as diabetes, depression, smoking etc., your doctor may recommend more frequent physicals.

Why can’t I just talk about what’s going on with my health?

You can, but you have to understand that you might need to schedule more than one appointment if you want your concerns to get the attention they deserve. That’s because of the way appointments are scheduled. The reason for this scheduling system is proper billing, and allotting enough time for each of the doctor’s patient’s needs.

An example:

If Mrs. X comes in for an appointment about her ear infection, she is given a 10-minute appointment. She may be in the office for 30 minutes, but she gets 10 minutes with the doctor. When the doctor gets into the room she springs on him that she is also dealing with chronic incontinence (inability to control her bladder). That’s an entirely different problem that probably requires a urologist. SO, the doctor doesn’t even talk to her about the incontinence other than to give her a referral to the urologist, and he gives her a prescription for an antibiotic for her ear infection. Mrs. X feels like he glossed over her problems. In fact, the doctor did the best thing he could do (albeit in a rushed manner) because he had to fit 2 problems into 1 appointment slot.

If your doctor refers you to a specialist

Sometimes patients feel like their doctor is pushing them off to another doctor because they don’t want to deal with them. Nothing could be farther from the truth. In fact, seeing a specialist is the best thing you can do if you have a specialized problem. For example, if you suffer from chronic headaches, a neurologist may be the best person to assess and treat the problem.

If you would like to get more information on how to get more out of your doctor appointments, sign up for the FREE Appointment 101 series!

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

The Erickson Family, Photo by Everbranch Photography

Originally posted 2017-12-16 15:55:06.


recurrence

The metaphor of a rollercoaster is often used to describe cancer, and for good reason. The ups and downs of your emotions, your schedule and the status of your health affect a patient and their family from the moment you suspect there’s a problem. This is especially hard for children, who have far less information than adults do, about what’s happening, They depend on their parents to help them know how to respond to these peaks and valleys. The first thing you can do to help your children through a recurrence of your cancer is to assess how you’re handling things.

The good times

After enduring the hard times of cancer treatment and finally being declared NED, in remission, or even “cancer-free,” you want to celebrate. At the very least, you want to breathe a sigh of relief and go back to life as normal. Thankfully, you are soon feeling like the old you. But still, it’s hard. Every twinge of pain makes you wonder if it’s back. Afterall, everyone responds differently to various forms of treatment.

Just as you rely on your care team, they rely on you to communicate with them in order to catch a recurrence of cancer. Just like the first time you go through treatment, early detection of disease activity is crucial. You dread your return appointments to the doctor. What if they find something?

Then, One day they do

The results of a scan come back and the doctor tells you it’s a recurrence. The rug is pulled out from under your feet. It feels very much like the first time the doctor told you it was cancer. You have the same fears and questions as you did when cancer first came in your life, except now, you’re more physically beaten up from various treatments. You may also be running out of treatment options. Your kids are older and very aware of the difficulties that come with each new treatment plan.

My Tip

We’ve always tried to have another treatment option waiting in the wings so that if the current treatment isn’t working, we know what the next step is. That’s helped us to feel less overwhelmed at scan time. This time, though, we have no idea what happens next.

Keeping in touch with your care team

It’s important that you have a good relationship with your medical team. If you feel you can trust them, it is much easier to walk into the unknown. They’ll help you to know whether side effects are temporary, how long they might last, and if a side effect warrants going off of a drug.

Knowing that you trust your medical team will help your children to feel better about things. It’s a good idea to periodically clarify your goals with your care team.

  • Is your cancer (still) curable?
  • What kind of life extension does your doctor think you can get from a given treatment?
  • What is the plan, if this treatment doesn’t work?
  • How can you relieve pain and other side effects?

All of these are things are important to know as you’re weighing your treatment options. Your children will also want to know about these things, especially if they are school age or older.

Only you can decide what is right for you and your family. Even when the medical options run out, or you choose not to pursue them, you can still have quality time with your family.

A Second opinion never hurts.

Whether you’ve just been diagnosed, or you are having a recurrence of your cancer, it’s your life on the line. That being said, it is very likely they will affirm what your doctor is doing. That affirmation can go a long way toward you feeling comfortable with your treatment and building trust with your medical team. Make sure that you let them know about your goals for treatment and bring a full set of medical records with you.

Be prepared

When starting a new course of treatment, make sure that you have the proper medications on hand to control potential side effects you may experience over the weekend, or in the middle of the night when it’s more difficult to reach your doctor. You don’t need to suffer. There are ways to alleviate the side effects of treatment as well as the symptoms of the disease. In order for your doctor or palliative care specialist to best help you, you need to tell them if you are having problems.

The effect of recurrence on your family

Our daughter, Emily described the feeling of recurrence from the viewpoint Emily Ericksonof a patient’s child. “Can’t he just be okay? I just want him to be okay. It really is a roller coaster of emotions for us [kids} as well. If you have your own issues that you’re dealing with, they become maximized with each recurrence.”

This is true. Examining the impact of recurrence on survivors of cancer and their family members, it has been observed that, “Cancer recurrence is described as one of the most stressful phases of cancer. Recurrence brings back many negative emotions, which are different and may be more intense than those after the first diagnosis of cancer. Survivors and their family members have to deal with new psychological distress.” (1)

Teach your children well

It’s hard to go back to the grind of treatment or change to a new one with uncertain side effects and results. Enduring another course of cancer treatment is quite a lesson in delayed gratification, for your children. It shows them what you are willing to do for a time (now), in the hope of having more quality time with them, later.

Recurrence doesn’t mean it’s the end: Our Story

My husband gets his treatment from the University of Minnesota. When he was first diagnosed, we went to the Mayo Clinic in Rochester, MN with the blessing of his oncologist. The Mayo, in turn, said he couldn’t possibly be getting better care. This helped us feel secure with his treatment plan. This made it worth getting a second opinion, even though it didn’t change his actual treatment.

We put on brave faces for our kids. Still, they were crushed when I told them about the scan results. They’d had four years on this roller coaster. During that time, they’d made many friends with parents who have cancer. They had seen some of those friends lose a parent to cancer.

We had a month to absorb the shock. Dan took a couple of short trips that needed to happen before he started treatment again. Melissa Turgeon from the Angel Foundation came to our home with an intern and a photographer and gave us some amazing memories. They made plaster molds of Dan’s hand and of our hands together. The photographer captured those moments as well as some very fun family pictures. We were preparing for the end of those kinds of good times.

Plaster Casts

When I told the girls, they were happy but hesitant to get too excited. One of our daughters said. “We’ve just seen this so many times; up and down, up and down.” The girls were now older and more experienced with this dreaded disease. They knew what was ahead. We had plaster casts made of Dan’s hands and one of his hand and mine together. The Angel Foundation arranged to have a photographer capture our family on film before things changed…again.

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

Surprise!

Then, Dan went back in for a pre-chemo CT scan, just to get a baseline of where he was. The cancer that was on the previous month’s scan was mostly gone! So, back on the Tagrisso Dan went.

After 2 years of Tagrisso, the cancer again progressed. Gemzar and Cisplatin were used for a while, but it’s no longer responding to treatment and the University of Minnesota has run out of options for him.

The end of the line?

Having nothing left with which to barricade the door to death is frightening. It can feel like the end of the line. Dan will return to the Mayo Clinic in the hope that they will have an experimental treatment that he can try. The treatment might work, but it might not.

It really is a roller coaster.

It’s okay to grieve

While it is best if your kids see you as being in control of your emotions so that they aren’t afraid, it is still okay to grieve. In fact, it is very healthy. You may feel frustrated by the news of recurrence. You’ve done everything that you were supposed to do and now you are back in the chemo chair.

Often, everyone in the family is trying to be strong, leaving others in the family to wonder if they are the only one hurting and if it’s even okay to feel like they do. It’s helpful for families to take some time to talk together about their feelings. It can help each member to know that they aren’t the only one who is sad (or angry or frustrated, etc.) about the recurrence. Then, you can roll up your sleeves and move forward in the way that is best for you and your family.

More…

For more information about how to help your family through your cancer journey, check out my latest book, Facing Cancer as a Parent: Helping Your Children Cope with Your Cancer. It’s available in paperback and Kindle!

Buy it TODAY!

 

 

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 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

The Erickson Family

Footnotes:

  1. ‘Again’: the impact of recurrence on survivors of cancer and family members.  2010 Jul;19(13-14):2048-56. doi: 10.1111/j.1365-2702.2009.03145.x. Vivar CGWhyte DAMcQueen A.

Originally posted 2018-08-06 07:00:01.


Breathing Exercise

This is part 4 of our Breathless Series. In Part 1, we looked at some of the reasons for breathlessness in cancer patients. I also shared my husband’s experience with shortness of breath to the point he nearly died. In Part 2, we looked at medical approaches to breathlessness. Part 3 was a look at non-medical approaches to breathlessness, including breathing techniques and ways of controlling your environment to alleviate symptoms of breathlessness. In this final installment of the series, we will look at more non-medical ways to alleviate shortness of breath: breathing exercise.

Breathing is Medicine

Donna Wilson, RN, is a personal trainer at integrative medicine center at Memorial Sloan Ketterling Cancer Center in New York. She helps restore flexibility, reduce breathlessness and fatigue in cancer patients and survivors. In a recent webinar presented by the Lung Cancer Alliance, she shared some breathing exercises that can be used to strengthen your breathing.

It may sound counter-intuitive to use breathing to combat breathlessness. But, Donna says, “Breathing is medicine. Exercise is medicine.”

In part 3 of this series, we learned about the mechanics of breathing, as well as some ways we can breathe to bring immediate relief of breathlessness. Pursed-lip breathing is a great example of this.

We want more than short-term relief, though. We want long-term improvement in our breathing. Breathing exercises along with other exercises to strengthen the muscles in chest wall will help you to breathe most efficiently.

By John Pierce (Own work), via Wikimedia Commons

Diaphragmatic Breathing Exercise

We talked about diaphragmatic breathing in the last post. Let’s get a little more detailed here.

If you place your fingers just below your rib cage and breathe, you will feel the diaphragm. Try it!

Breathing is the perfect exchange.

You breathe oxygen in (ideally through your nose):

Feel your diaphragm flex downward as your lungs fill with air.

Now, exhale carbon dioxide (though your mouth):

Feel your diaphragm flexes upward as the air is pushed out.

Relaxation Breath 4-8-8:

  1. For this breathing exercise, inhale through your nose for the count of four (This is a mental count, not actual seconds). This increases the amount of air you take in
  2. Hold that breath for the count of 8. This allows air to be distributed throughout your lungs
  3. Breathe out with pursed lips for a count of 8. This keeps airways open longer and prompts a larger inhalation through the nose

“Sniffles”

This fast breathing exercise uses “sniffles” to strengthen the diaphragm:

  1. Sit with your back upright.
  2. Place your hands on your knees, and your feet, flat on the floor.
  3. Close your mouth.
  4. Inhale for 2 counts through the nose.
  5. Exhale for 2 counts through the nose.
  6. Continue to breathe in this pattern.

In the beginning, you will keep this up for 15-30 seconds. Your goal is to eventually perform this for 60 seconds, once or twice each day.

“Healing Breath” Breathing Exercise

This is especially helpful for episodes of breathlessness from coughing, activity, or anxiety.

  1. In a sitting position, gently tilt your chin to your chest. This will relax you.
    1. Breathe out through lips in short bursts 10x
  2. When Neck muscles feel less stressed:
    1. Breathe in through the nose
    2. Breathe out through pursed lips 3x
  3. Then when your breathing normalizes:
    1. Breathe in through your nose for a count of 4
    2. Breathe out through your mouth making an “AH” sound for a count of 8.

To see this demonstrated, check out this video.

Coordinated Breathing Exercise

It’s so important as a cancer survivor to keep moving! Donna Wilson has a great video that addresses the difficulties cancer patients face as they resume movement after cancer treatment and/or being sedentary for quite some time. Check out her other videos as well!

Shortness of breath during exercise is normal. Your muscles contract during exercise. Because of this, you need to breathe faster to get more oxygen to the muscles.  Modify what you are doing if necessary. Coordinate your breathing with exertion.

You always breathe in (unless you have a neurological injury).

People don’t always breathe out efficiently, though.

Pursed lip breathing creates back-pressure in your airways. This prevents your small airways from closing and makes breathing easier. Never hold your breath.

Breathing out is the key. The power is in the exhale. Whenever you do something that takes effort (push, pull, lift, bend over), breathe out. Coordinate breath with movement

Breathing Exercise
Image courtesy of the Lung Cancer Alliance

Check out this tip sheet on coping with shortness of breath, from the Lung Cancer Alliance.

I would like to thank the Lung Cancer Alliance and Donna Wilson for allowing me to share this information with you (originally at Heather Erickson Author/Writer/Speaker).

To learn more about the Lung Cancer Alliance, check out their website, their Facebook page, or their Toll-Free Helpline 1-800-298-2436. Contact them for more information on living with lung cancer.

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

 

 

 

 

 

 

 


Interpreter

Have you ever thought about what it’s like to have limited English speaking skills? How would you handle things like a doctor’s appointment? There are things such as disabilities, and being a Limited-English speaking person (or LEP), which can affect your communication with your health care team and your access to support services.  Today, we’re going to learn why an interpreter is a crucial part of health care for people who aren’t fluent in English.

18%, or 47 million people in 2000, spoke a Language other than English at home. 8.1% of the population, age 5 and older spoke English less than “very well” (2000 US Census)

Check-in Downstairs

A few years ago, our local clinic was getting a major renovation. For 2 years they jostled departments around and several times, even moved where patients checked in. When they moved the check-in desk from the 2nd floor to the 1st floor, I witnessed something that made me see how hard something as basic as a doctor’s appointment can be for someone who doesn’t speak English well.

Use an interpreter if English is a second language, to get the best care

I saw a little old lady who I would guess was from Russia or the eastern bloc. She made it all the way up to the second floor, pushing her walker an inch at a time, only to discover they weren’t doing check-ins there anymore. She tried to get the attention of the woman at the desk. Finally, the woman noticed her and said, “There was a sign downstairs. You have to go back down.” There was little sign of understanding. After some exchange, the little old lady returned to the first floor with great effort. Fifteen minutes later, she returned. Her doctor was on the second floor. She looked completely exhausted from the up and down and up again.

I imagined how hard it must be to immigrate as an old woman; a whole new country, a new language, and health problems, as well. She needed an interpreter.

Who has a right to a translator or interpreter*?

If you’re hearing impaired, under the Title III of the Americans with Disabilities Act (ADA), your health care provider must provide you with an interpreter, if you need one in order to clearly communicate with your healthcare provider.

Under Title VI of the Civil Rights Act of 1964, discrimination based on national origin is prohibited. Executive Order 13166 issued in 2000, says that people have a right to meaningful access to federally funded programs and activities. Many individual federal programs, states, and localities also have provisions requiring language services for LEP individuals. These provisions are valid, even in “English-only” states. For more information, check out the LEP.gov website.

*The difference between a translator and an interpreter is described well at Language Scientific’s website. Check it out.

What’s the process of getting a translator?

If you or a loved one needs these services, contact your health care provider prior to your appointment, to let them know. Don’t hire your own interpreter and expect to be reimbursed. Most medical facilities contract with a third-party company which provides translators and/or interpreters on an on-call, as needed basis, at no cost to the patient. Covering the cost of the interpreter is one of the normal costs of operating a business for your clinic or hospital.

Just say “NO”

Occasionally, a health care provider may try to encourage you to bring a family member or friend to your appointment as a way to “save costs.” Say no. It is difficult for family members and friends to be neutral and translate everything they hear. Using family and friends as interpreters can also have a negative effect on your patient confidentiality. Instead, if you are comfortable, bring a trusted friend with to your appointment to keep an ear out for anything that might be lost in translation.

Also, Medical Interpreters are qualified in ways which even someone who is bilingual can’t compare to. They have expert knowledge of proper medical terminology, enabling them to facilitate communication effectively. This saves time and prevents medical mistakes based on miscommunication. They are also available on-demand, night or day.

“But I don’t need an interpreter.”

You may be wondering how this pertains to you. First, I hope that I’ve opened your eyes to something that many of us know little about. It also illustrates a picture of health care for all of us. It is a specialized area that many people don’t fully understand. It’s like they are speaking one language and the doctors are speaking another. This causes confusion and miscommunication. These are the root of many frustrations in life. Never be afraid to ask for clarification when you don’t understand something your doctor says or does.

For more information on using an interpreter see:

Office of Inspector General, Guidance and Standards on Language Access Services: Medicare Providers (Department of Health & Human Services)

Also, if you would like to get more information on how to get more out of your doctor appointments, sign up for the FREE Appointment 101 series!

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

The Erickson Family, Photo by Everbranch Photography

Originally posted 2017-12-16 15:36:36.


Advance Care Directive

What is an Advance Care Directive?

People often think of an advance care directive in the context of a terminal illness, such as cancer. But, this legal document should be in place for unexpected emergencies, such as car accidents, as well. It is also known as a healthcare declaration, a directive to physicians, a medical directive, a health care directive, and a living will. The exact terminology often depends on where you live.

Planning Ahead: Yes, You Do Need One!

Advance care directives are a powerful tool. They take away guilt and resentment that survivors may have regarding how someone has died. You’re able to be very specific about your feelings regarding end-of-life care, removing any doubts that various family members may have. This is what most people associate with an advance care directive (A.K.A. Living Will).

You should create one as soon as possible, ideally, before you are ever faced with a life-threatening accident or illness. Once you are ill, the process of putting together your advance care directive can seem emotionally overwhelming. It’ll make you acutely aware of the fact that you will, in fact, die long before you want to. It’s real, rather than theoretical, as I would be if you weren’t facing death. It doesn’t matter whether you’ve just been diagnosed or you’ve been fighting your cancer for a long time and can feel death knocking on the door of your life.

Advance Care Directive

Our Story

In the beginning of Dan’s cancer journey, he had a very hard time approaching the advance care directive. So, I got a booklet[1] and went through 2-3 questions each day with him. I asked him the questions and he answered. When I needed some things to be clarified I asked further questions so that there was no doubt in my mind as to what his wishes were. I wrote all of his answers down as he gave them.

This process took the logistical burden off of him and it made the process less overwhelming. We always stopped after 2 or 3 questions so it didn’t feel so awful. The other benefit to this was that he and I were communicating about his wishes. This is essential since I will need to ensure they were carried out as he wished. I was listed as his proxy, giving me the final say about his health care.

Power of Attorney*

Power of attorney gives someone you choose, the right to act on your behalf in financial or real estate issues. This sometimes scares people. Handing over that kind of legal power is a big deal. It’s actually not as concerning as it sounds. For one thing, you will choose someone who you really trust.

Secondly, there are different types of power of attorney. In real estate, we often have clients who are unable to be at closing. They give someone they trust, a limited, or “specific,” power of attorney. This allows the proxy to sign legal documents on their behalf in that instance only, or in all legal matters that are defined, for a limited period of time.

In most cases, power of attorney will end if it expires during the time the person granting it becomes incapacitated. So how does this help you in a medical emergency? You will want to make sure that you have a durable power of attorney in place. This is done by adding additional language to reflect your wishes.

Advance Directive

Medical Power of Attorney*

Power of attorney documents ensure your financial and legal issues will be handled if you are unable to, but what about medical decisions that need to be made? This is where the medical power of attorney comes into play. This is also known as durable power of attorney for healthcare, healthcare proxy, or healthcare agent. Just as in a power of attorney, you’ll want to make sure the proxy you choose is someone you trust to carry out your medical decisions if you are unable to.

Make it Legal*

No matter what, you should get in touch with an attorney who can give you the specific legal information that fits your situation. Laws vary from state to state, so you always want to make sure you are following your local laws. National Cancer Legal Services Network offers referrals to free legal services programs so that people affected by cancer may focus on medical care and their quality of life.

Your Proxy and Other Loved Ones

“Because I love you, I need to know what you want. Because you love me, you need to let me know, so I can know what to do.” -Dr. Vic Sandler

When looking for a proxy (which you’ll need), a spouse is ideal. Whoever you choose, they will need to be someone whom you can count on to carry out your wishes. They may need to be strong in the midst of other loved ones who don’t understand the decisions you’ve made.

Often, a patient decides that there is a point at which they no longer wish to keep fighting. This may be at the point when they are no longer able to express their wishes and must count on a proxy to carry them out. This may mean not opting for ventilation machines or feeding tubes.

The thought of losing the patient can be unbearable to family and friends. They may get angry with the proxy for making decisions that the patient would have wanted. The best prevention for this is to make it very clear to everyone in your family and close circle of friends what your wishes are. Also, tell your loved ones and your proxy, that you’re so grateful to have a proxy you can count on to carry your wishes out. Hearing these things from your lips will go a long way toward giving all of your loved one’s peace of mind.

It’s important that you talk to your children about this. Explain to them, in an age-appropriate way, why you’re making the decisions you’re making. They need to know that you’d rather be with them, but that your time is becoming short. You want the time you have together to be good time.

Family Care Conference

Your Advance Care Directive is More than Medical

After you’ve written or filled out your Advance care directive you’ll need to have it notarized. You then give it to your clinic to keep on file in the event there is a question of how to proceed near the end of your life.

The advance care directive addresses your specific health care desires as you near the end of life, but it isn’t limited to medical decisions. As part of this process, you can also express what you’d like done in your last days and hours.

  • Who’s going to be at your bedside?
  • Do you want everyone you know, there? Do you want time reserved for your closest family members?
  • Is there anyone you don’t want there?
  • Would you like music played?
  • Is there a special pet you’d like to hold?
  • How would you like to be dressed?
  • Do you wish to have a member of the clergy there? Anyone in particular?

The more, well thought out the process of death is, the better the death can be. The better your death is, the easier it is for your family to cope after you’re gone.

Footnotes:

[1] Advance care directive paperwork (or booklets) are usually available from your doctor’s office. While not essential, a pre-designed booklet made specifically for planning your advance care directive can be extremely helpful in this process. It will ensure that you have covered all of the bases and guide you through the process.

*Note: Please see our Legal Disclaimer.

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

The Erickson Family, Photo by Everbranch Photography

Originally posted 2017-12-14 02:52:41.

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