Category Archives: Patients


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/.


Ring Theory Circle of Support

The Ring Theory-Finding Your Circle of Support

The Ring Theory was created by breast cancer survivor and clinical psychologist, Dr. Susan Silk Ph.D., and arbitrator/mediator, Barry Goldman. The gist of it is this: Comfort in. Dump out. Who you comfort, and who you “dump” your grief on (in other words, who comforts you) will determine what circle of support you reside in.

Take out a piece of paper. In the middle of the page, draw a small circle. Label it with the patient’s name. The patient is in the center circle of support because the patient is the center of their cancer universe. It is everyone else’s job to support them. No one is allowed to dump on the patient. What does that mean?

The Patient- The Center

When Karen, a breast cancer patient was no longer able to bring meals to neighborhood functions or help with the kids’ school activities, people remarked at how hard it was without her, since they depended on her. Often, people say things like this to let the patient know they are important. However, this added a new layer of guilt to Karen’s shoulders, even though that was never the speakers’ intentions. So, don’t say anything to the patient regarding the effects of his/her cancer on you. Instead, listen to and comfort the patient. It’s about them—not you.

Circle of Support for a Spouse/Caregiver

What about their spouse or caregiver? They’re next in line for support. Draw another circle around the “patient” circle.  That’s the “spouse/caregiver” ring.  Only the patient is allowed to dump The spouse or caregiver. Anyone else should listen to and comfort the spouse or caregiver. So, it’s about the caregiver/spouse too—not you.

Circle of Support for Other Immediate Family Members

Next, draw another circle around the first, which will represent the immediate family. Immediate family can vent to anyone other than the patient and the spouse/caregiver.

One thing to note is that immediate family can vent with one another. They all share the same concerns and are able to comfort one another in a unique and special way.

Circle of Support for Extended Family, Friends, and ColleaguesRing Theory of Cancer Support

Draw a fourth circle around the immediate family circle. This one represents extended family and close friends.

A fifth circle will represent colleagues and friends. Each subsequent circle of people is a little more distant from the patient and their situation.

You never want to dump on or vent to someone in a circle closer to the patient than the circle you’re in.  For example, a friend would not dump on a parent or a spouse. They could, however, talk to another friend, or someone outside of the situation.

Circle of Support for Lookie-Loos

Lookie-Loos reside on the outer edge of the rings. These are people who have nothing at stake. They are the grocer or the guy that visits your garage sale, someone from church who hasn’t spoken to the patient or caregiver in months, or someone who happened to come upon the patient or caregiver’s blog.

Lookie-Loos can keep their thoughts to themselves. They aren’t allowed to dump on anyone, but they can offer comfort. In fact, many times, a lookie-loo has been a great source of encouragement to our family.

It’s Etiquette that Works in any Crisis

Hopefully, this explains in a nutshell, the etiquette of who to comfort (anyone who is hurting), and who to dump on (only people in a circle larger than yours—and never the patient).

Dumping or venting is anything that isn’t solely and directly supportive. Remember the adage, “It’s not about me.” While it may affect you, dumping on anyone in a circle closer to the patient than you are, can be seen as insensitive, selfish, and tacky, even when said with the best of intentions.

By the way, this works for any crisis someone may go through, health, financial, marital, etc.

This information and more is found in my book Facing Cancer as a Friend: How to Support Someone Who Has 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

The Erickson Family, Photo by Everbranch Photography

Originally posted 2018-01-22 07:00:36.


Internet Research

In the past, patients were often told to avoid doing their own internet research. That was because the internet really is a dumping ground for both information and misinformation. More and more, doctors are appreciating their patients’ efforts to participate in their healthcare. This is especially true when the patient uses internet research wisely.

Benefits of doing your own research:

You can decide if what is happening merits a trip to the doctor.

Often you can be put at ease when you discover your symptoms might feel awful, but you most likely have a cold. Sometimes, odd, but otherwise painless symptoms mean something more ominous is happening. For example, when my husband felt 3 hardened lymph nodes above his left collarbone (supraclavicular nodes), that specific symptom was said to indicate a 90% chance of metastatic lung cancer. It seemed improbable since he had never smoked and like most people, we thought of lung cancer as a smoker’s disease. Still, he made an appointment that saved his life.

Your doctor can’t keep up with all of the latest innovations in their field

Often, we expect our doctors to know everything. The medical field has become a complex place. Two years ago, my husband was ready to go to hospice. He could barely breathe; the cancer had so filled his lungs. He’d been following the experience of a blogger who was on a trial. Dan seemed to fit the profile of an ideal candidate for the drug. Finally, the FDA approved Tagrisso (a couple of months ahead of schedule). Dan asked his doctor to look into it. She did. She had him tested for the mutation the drug-treated and he was a match! Within two weeks of being on the drug, he was able to breathe again. He’s been on the drug ever since. His doctor appreciated his research and self-advocacy.

There are some drawbacks to internet research:

Sometimes the thing you think will be great—isn’t.

I’ve been using turmeric supplements as a way to ease the pain I experience from rheumatoid arthritis. Because it has worked well for me, we wondered if it would help with the pain Dan is in every day. We asked the palliative care specialist about it. She told us that even though turmeric is natural and over the counter, it isn’t something Dan should use. Turmeric is a natural blood thinner and Dan is a hemophiliac. It can also affect his blood counts that are already low because of the treatment he is on. We were glad we didn’t assume that an otherwise safe supplement is safe for him. Always check with your doctor about over the counter or “natural” supplements.

Internet Research isn’t a replacement for a doctor

No matter how empowered we can feel by the internet, there’s no replacement for a medical degree and years of experience. I often write posts for Quora, a user-input-based site. Every week, scared people ask me if their symptoms are indicative of cancer. I use the platform to encourage people to see their doctor when they are experiencing unusual symptoms. While most of these people don’t have cancer, there is often something happening with their health which needs to be addressed by a medical professional.

How you approach internet research is important

“Just the facts, Ma’am.”

Internet research has become second nature for most people, whether they are looking for a new car or the latest cancer treatments. It’s easy to pull up endless pages of information. But is the information factual? Is it experiential? Positive? Negative? These can be difficult questions to answer.

While the internet can be a valuable tool, it can also be a very frightening place, especially when you research cancer. Survival rates and statistics sound overwhelming when they’re not placed in the proper context. If you choose to research your symptoms or your diagnosis on the internet, use reputable websites. What makes a site, “reputable?”

User-Input Based Sites

Social Media and other user-input based sites such as forums have given everyone a platform. Because of that, there’s a lot more opinion on the internet than fact—especially when it comes to health issues. It’s difficult to wade through the endless sea of contradicting statements. Everyone has an opinion about cancer, cancer treatment, and what people should be doing. Random, anonymous people are very comfortable giving their opinions online. “Opinions,” is the keyword.

Many people use the Internet as their therapist. They post all their fears and the “what-ifs” online, where to the undiscerning eye, it can be frightening. While blogs and “cancer support” sites can be helpful for patients looking for support, they can also be a source of misinformation and confusion. The Internet tends to capture the negative. Because of this, use caution when reading user-input based sites. Keep in mind that the writer’s individual situation is different from yours.

Reading as a writer

Pseudoscience

Pseudoscience is rampant on the Internet. The Scrivener WordNet Dictionary defines pseudoscience as, “an activity resembling science but based on fallacious assumptions.”

Problems arise when patients or their loved ones believe pseudoscience and it contradicts what a health care provider recommends. This can cause a patient to delay a legitimate course of treatment. Meanwhile, cancer can spread.

This isn’t only a problem with cancer. I know of someone who didn’t follow their doctor’s advice in favor of another form of “treatment” for their diabetes. She went blind and ultimately died of a diabetic coma.

Rifts between family members often happen when they don’t agree on a treatment approach in light of a false promise made on the internet. The result is guilt, discord, and hurt feelings within the family.

What you need are facts pertaining to the cancer that you or your family is facing, rather than the cancer someone else has.

 

Using Trusted Resources

Health information, whether in print or online, should come from a trusted, credible source. Government agencies, hospitals, universities, medical journals, and books that provide evidence-based information are sources you can trust. Too often, other sources can provide misleading or incorrect information. If it makes claims that are too good to be true, remember—they usually are.

The National Cancer Institute gives the following advice on internet research:

Online sources of health information should make it easy for people to learn who is responsible for posting the information. They should make clear the original source of the information, along with the medical credentials of the people who prepare or review the posted material.

Use the following questions to determine the credibility of health information published online:

  • Who manages this information? The person or group that has published health information online should be identified somewhere.
  • Who is paying for the project, and what is their purpose? You should be able to find this information in the “About Us” section.
  • What is the original source of the information that they have posted? If the information was originally published in a research journal or a book, they should say which one(s) so that you can find it.
  • How is information reviewed before it gets posted? Most health information publications have someone with medical or research credentials (e.g., someone who has earned an M.D., D.O., or Ph.D.) review the information before it gets posted, to make sure it is correct.
  • How current is the information? Online health information sources should show you when the information was posted or last reviewed.
  • If they are asking for personal information, how will they use that information and how will they protect your privacy? This is very important. Do not share personal information until you understand the policies under which it will be used and you are comfortable with any risk involved in sharing your information online.

You can learn more about doing internet research as well as using other sources of information cancer, by checking out the National Cancer Institutes’s Website: http://www.cancer.gov/about-cancer/managing-care/using-trusted-resources.

Sometimes it’s good to take a “digital break.”

While internet research can be really helpful, there are also times when it’s good to take a digital break.  That’s what I’m going to be doing in the month of January. I’ve noticed that I’m not getting as much writing done as I should be, so rather than spending time on email, social media, and other online activities; I will be writing and reconnecting with my goals for 2018. You will still see weekly blog posts on Facing Cancer with Grace, because I have already written them and will post them automatically, using a scheduler. Even though I may not respond to your comments right away, I will read them and appreciate them greatly. Since I won’t be sharing my posts to social media in January I would appreciate it if those of you who use social media would share my posts. Thank you!

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 2018-01-15 07:00:48.


Scanxiety

There’s a word that’s unique to the cancer experience. Scanxiety. Most people are familiar with anxiety. There are many types of anxiety, including (but not limited to): generalized anxiety disorder, social anxiety, phobias, and PTSD (post-traumatic stress syndrome).

Scanxiety is a form of situational anxiety or acute stress reaction disorder.

Because of the nature of cancer, patients are already experiencing chronic stress, or the stress of demands that seem endless, with little hope in sight for long stretches of time. When you add an additional stressor to this, it can feel overwhelming, leading to physical symptoms of stress and anxiety for the patient, and his or her family members.

The first time you experience scanxiety is when you suspect you have cancer and are in the process of having it diagnosed—or ruled out as a concern.

Our Story

When Dan felt hard, enlarged lymph nodes, just above his left collarbone, we knew something was wrong. The soonest the doctor could see him was three days later. During that time, we looked at all the possibilities, and the most likely cause of his symptoms was cancer.

Upon examining him, the doctor said, “I can’t tell you exactly what it is, but I can tell you that it’s serious.”

It’s cancer. How bad is it? I didn’t dare say what I was thinking, out loud, in that office.

“Do you have any plans this afternoon? Can you stay for more tests?”

Of course, we stayed. Dan was shuffled from one place to the next. The lab, the room where they performed an ultrasound, the x-ray department. Then, we waited. That was our first dose of scanxiety. Within the next two weeks, we would experience scanxiety as we awaited results from CT scans, MRI’s, and a PET scan.  Each test would add a little more information to Dan’s medical chart. Combined, we would learn the full scope of what we were looking at.

What scanxiety feels like:

When scanxiety hits, you experience many of the symptoms of acute stress (1):

  • Emotional distress — some combination of anger or irritability, anxiety and depression, the three stress emotions.
  • Muscular problems including a tension headache, back pain, jaw pain and the muscular tensions that lead to pulled muscles and tendon and ligament problems.
  • Stomach, gut and bowel problems such as heartburn, acid stomach, flatulence, diarrhea, constipation, and irritable bowel syndrome.
  • Transient over-arousal leads to an elevation in blood pressure, rapid heartbeat, sweaty palms, heart palpitations, dizziness, migraine headaches, cold hands or feet, shortness of breath and chest pain.
lung cancer awareness
Image courtesy of stockdevil at FreeDigitalPhotos.net

You’re focused on one thing:

…the pending results of a scan.

Those results will affect your life to a degree that is difficult for most people to comprehend. Scans can trigger a lot of emotions. If cancer has been growing and you’ve started a new treatment, you might feel hope and anticipation. “Is the treatment working?”

Ironically, if things have been stable, fear and anxiety can rear their ugly heads. The thought of recurrence is lurking in the back of your mind. “What if the cancer is back? I had a cough last week.”

Oh, yeah. That’s right. I’m on a limited timetable here.

Once diagnosed, many people experience scanxiety again each time they have a CT scan, x-ray, MRI, bone scan, or any other imaging test that will shed some light on whether the cancer is being effectively treated or whether it is progressing. You can’t help but focus on the things that you’ve pushed to the back of your mind. Every scan is a step back into reality.

How long do I have, Doc?

From the results, you learn what your prognosis is. The doctor tells you what your treatment options are. You make decisions. You decide on your treatment plan and wonder how you’ll proceed with the rest of your life.

  • Do you continue to work—can you continue to work?
  • Do you put down the deposit on your annual family vacation?
  • What minor or major life changes will happen as a result of what we learn from the next scan?
  • Will the next scan be the beginning of the end?
  • Will I be able to continue to live as I have been?
  • Is cancer in a new place? What can I expect?

The feeling of a good scan is amazing.

You have a 3-month extension on life. It feels like you’ve been strapped into the electric chair and the governor called.

I’m writing about scanxiety today because this Monday, my husband, Dan will be having two different kinds of scans: a brain MRI, an upper body/chest CT scan. So, we are experiencing scanxiety. If you are a person who prays, it would mean a lot to me if you would keep Dan and our family in your prayers, not only for his health but for our peace of mind, as well. He will find out the results of those scans a few days later when he meets with his oncologist. The days leading up to the scans and following, while we await the results, are difficult ones.

There are ways to manage scanxiety.

The National Institute of Mental Health gives the following suggestions for dealing with stress (2). These can be applied to scanxiety as well.

The effects of stress tend to build up over time. Taking practical steps to manage your stress can reduce or prevent these effects. The following are some tips that may help you to cope with stress:

  • Recognize the Signs of your body’s response to stress, such as difficulty sleeping, increased alcohol and other substance use, being easily angered, feeling depressed, and having low energy.
  • Talk to Your Doctor or Health Care Provider. Get proper health care for existing or new health problems.
  • Get Regular Exercise. Just 30 minutes per day of walking can help boost your mood and reduce stress.
  • Try a Relaxing Activity. Explore stress coping programs, which may incorporate meditation, yoga, tai chi, or other gentle exercises. For some stress-related conditions, these approaches are used in addition to other forms of treatment. Schedule regular times for these and other healthy and relaxing activities. Learn more about these techniques on the National Center for Complementary and Integrative Health (NCCIH) website at (www.nccih.nih.gov/health/stress ).
  • Set Goals and Priorities. Decide what must get done and what can wait, and learn to say no to new tasks if they are putting you into overload. Note what you have accomplished at the end of the day, not what you have been unable to do.
  • Stay Connected with people who can provide emotional and other support. To reduce stress, ask for help from friends, family, and community or religious organizations.

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:

https://www.nimh.nih.gov/health/publications/stress/index.shtml


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


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.

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.

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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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