Advocating for your loved one at the end of life


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Five years to the week after I was diagnosed with breast cancer, my mother was diagnosed. She had known about the lump in her breast for a while, but my brother was going through some difficult health issues at the time, so she put off her own.

Either that or she suspected what it was and didn't want to know.

My mom was 72 when they found the mass, and mass it was. Measuring the size of an egg, it hadn't shown up on the mammography she had received because it was against the chest wall. Mammography is supposed to find these masses too, but... I don't know why they missed it. She got her mammograms at a military hospital as my dad was retired Navy.

But no matter whether it was on the mammogram, she could feel it, and she should have told them to stick a biopsy needle in it way before she told me about it. Of course, I scolded her. I was doing cancer 24/7 by then, speaking and educating women about breast cancer, but my mom ignored her own.

She just apologized and said she didn't think it was anything. I made an appointment with my surgeon, and she immediately scheduled her for a biopsy. My sister and I accompanied her to the day surgery and, knowing it was going to take a while, went to lunch.

My sister, not having done the cancer march, was sure it was nothing. I think there is a sense of protection when one person in the family gets cancer. The others think, "Well, my family has done their part, and now I don't have to worry." Wrong.

When we returned to the surgery center, I knew the good signs and the bad. When we walked around the corner, all the recliners were filled with people recovering from other biopsies. Mom was not there. I froze. That meant she was in one of the cubbies, small private rooms where bad news allows some privacy.

My sister thought it was sweet that she got a room and everyone else was out in the big area. When we walked into the space where mom was recovering, my surgeon was with her, and mom was crying. I stood for a second, and it was like her life and death flashed before me.

When she apologized for not taking the lump more seriously, I knew it was malignant. My surgeon said she would have the full pathology back in a week, so we took mom home and began planning. My mother called me the executive director of her cancer.

The first step was to move my dad, suffering from late-stage Parkinson's disease, to my sister's house until we could find a good nursing home. He needed the kind of care that she, with three little ones, could not provide for very long.

Then we met with my surgeon, who gave us the whole story. Mom's cancer was already in her lungs, the reason she had been so winded lately. Mom was hardly listening, knowing that I would translate everything that was being said later.

What the news told me was that my mother was dying. It was 1991, and we didn't have any of the life-prolonging drugs now available. I also knew that caring for my father had taken its toll on her, and I questioned her desire to live.

Three rounds of chemotherapy didn't help, and, if anything, hastened her demise. Her immune system was wiped out and the cancer galloped. She was diagnosed in November and by March,1992, it was clear to me she didn't have long to live. It was also time for us to have a conversation about what she wanted.

My oncologist, now my mother's oncologist, kept offering the next option, and I knew that the likelihood of them working was growing dim.

When Mom and I talked about the next option after number three didn't work, I said, "Mom, you know you have the option to do nothing and enjoy the time you have left with a better quality of life."

She immediately said that was what she wanted, telling me she was afraid to bring it up for fear she would be disappointing all of us by not fighting.

My mom was a Navy wife, hauling four children from base to base for 26 years while my dad served his time. I knew she was a fighter. I also knew she was tired.

What that discussion provided was time for us to talk about what she wanted. We planned her funeral, and we made sure all the paperwork had been taken care of. Now I know there was so much more we could have done that we didn't in terms of discussing what she wanted and how she felt about her life. I didn't want to accept that it was going to happen as quickly as it did.

For the next month she did nothing, and because she tended to be stoic, she lived with a lot of pain. She was staying with my sister, who had moved my dad to my brother's house. Dad was out of it, and I don't remember if they ever even had a conversation about mom's health. His dementia had increased and he often went days without speaking to anyone.

What I knew was that my mom had a strong faith. It had grown since the death of my brother, a Navy pilot killed when his helicopter crashed during flight training in 1972. What I didn't know was how to help with the pain.

When new spots showed up on her spine, I knew the pain was bad and palliative care hardly existed then. Little was done to help those in pain. Not until my sister called me in mid-May to tell me Mom's pain was really bad, did I know just how stoic she had been. I told my sister to meet me at the emergency room of the hospital.

When I got there, Mom was in a wheelchair, and it was clear she was in serious pain. I told her this was not the time to be stoic, and that we had to let them know this was serious. Her moans brought me to my knees, but it sure got her in a room faster. When the first ER doc walked in, I said, "Get her out of pain, NOW." Had I not dealt with the healthcare system for my own cancer, I never would have had the guts to be so demanding. Bu it worked.

I knew she needed morphine, and when the nurse came in and tried to start an IV in her arm, I told her through clenched teeth that mom had a port. The nurse said no one there knew how to access a port, and I replied, "Then go find someone."

A nurse from the pediatric floor was there in a matter of minutes and Mom got the morphine that would immediately take away the pain. The relief showed on her face, and I kicked myself for not doing something sooner about her pain. But why hadn't her oncologist?

Our oncologist was out of the city, but I insisted they admit her for pain control. That was Wednesday. On Thursday they moved her to the hospice floor, and I knew she would probably not be going home. But she was blessedly out of pain, and when she was lucid we could talk and joke. We called her brother in California and told him to come now if he wanted to say goodbye. He didn't make it.

On Friday when our oncologist came by, he said he wanted to start radiation on Monday to help with the pain. I just stared at him, thinking, no way. And at that moment it became clear to me how little the docs knew about pain at that time.

My sister and brother immediately looked to me when he left, but luckily the hospice nurse spoke up and said Mom would not make it to Monday. She explained the signs to us of swelling that indicated her kidneys were shutting down. Both my siblings wanted to believe the doctor, but I told them to believe the nurse, since doctors seldom saw the end of life.

We sang to her and talked to her even when her eyes were closed. I knew hearing was the last to go and we wanted her to know we were with her.

My brother was with her when she died. I had gone home for the first time in two days and was sleeping when I suddenly sat straight up in bed. I know now it was her spirit coming to say goodbye. When the phone rang moments later, I picked it up and heard my brother's voice. "She's gone."

I look back now and know that I should have demanded pain support much earlier than the week she died. How could I let her be in that much pain? Why didn't she tell us sooner?

They are all questions that will haunt me.

Today, you have the chance to make it better for those you love. Demand palliative care and demand it early. Pain is not acceptable and it can be controlled to give people a good quality of life.


Myeloproliferative neoplasm heroes honored


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One of my favorite things about what we do at CURE is to honor those who help behind the scenes to support and educate patients and their families and friends. Every year we hold the Extraordinary Healer award to honor a nurse who goes above and beyond, and last year we added a new award event where we honor eight heroes who have served those with myeloproliferative neoplasms (MPNs).

While MPNs are not seen as cancer because they don't act like malignancies, MPN patients and those who have rare cancers share in many of the side effects of treatment and possible early mortality, as well as the lack of information and support for what they are experiencing.

Those suffering from this family of blood disorders not only have a complicated name to remember but also a complicated definition for one of eight types of neoplasms included in the MPN category. Within the eight, three of the neoplasms are related to a gene that produces a protein that impacts the growth of the conditions. Sometimes called the "classic" MPNs, these three are Polycythemia vera (PV), essential thrombocythemia (ET) and primary myelofibrosis (PMF).

Those with PV have an excess of oxygen-carrying red blood cells, often accompanied by an elevated platelet count that could result in life threatening blood clots. ET is driven by an overproduction of platelets, which can slow the flow of blood and increase an individual's risk of clotting. PMF develops when the blood stem cells fail to mature properly, resulting in decreased levels of red blood cells, white blood cells and platelets. This eventually results in a scarring effect in the bone marrow impacting the marrows ability to form new cells.

Nearly 300,000 Americans live with one of these classic MPNs, and, because they are rare, those who can provide help and support to the newly diagnosed have become increasingly important.

Last year in conjunction with Incyte, CURE recognized eight MPN Heroes, patients and healthcare professionals who have committed to these diseases either personally or professionally. The MPN Heroes were recognized for either their individual commitment to patients by providing guidance, education or support above and beyond, or a broader commitment to the MPN community, meaning leadership in developing services and programs addressing the needs of MPN patients their families, friends, caregivers and medical professionals.

This year eight MPN Heroes will again be honored and CURE is collecting nominations now until September 12, 2014. So, if you know of someone who has made a difference in the lives of those with MPNs now is the time to nominate them as an MPN hero.


Survivorship research


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Every other year, the leading cancer survivorship researchers gather to share information on the needs of those who have gone through cancer and are working to live the remainder of their lives with health and joy. Supported by the ACS, NCI, LIVESTRONG, and the CDC, the 2014 meeting has brought attendees from some 30 foreign countries in addition to leading researchers in the United States.

Since its beginning in 2002, in addition to almost doubling the attendees, the meeting has added a patient advocate component that shows active survivors how to advance their causes.

The subtitle of the meeting is Advancing Survivorship through Multilevel Collaborations and includes researchers who provide the critical evidence to drive change, the health care providers who care for the patients, and the patients themselves. Changing how patients are treated, particularly when there is no component involved that will make someone money, is like trying to turn the Titanic in the middle of the iceberg field. Or as one presenter said, "We don't have a health care system, we have a payer system."

But the ongoing research gives validity and power to those who fight for us, whether we are living past treatment, have chronic cancer or live with metastatic cancer. The discussions ranged from the challenge of smoking, financial burden, employment issues, older Americans, underserved populations, and caregiver issues, among others. I am particularly interested in the caregiver issues. In the past decades, as cancer has become an outpatient disease, it is possible to be diagnosed, treated, live or die without ever being in the hospital. But who said the caregiver wants to be in the role of nurse and who said they are competent? And what if the caregiver does not understand or cannot comprehend the role of caring for someone?

A study I read recently talked about caregivers having severe depression and today a speaker from the Institute for the Study of Cancer Caregivers at Memorial Sloan Kettering Cancer Center touched on the subject. Studies from the Institute have shown a number of outcomes. For example, we now know that during survivorship, caregivers are more prone to distress than patients. There will be lots more on this meeting in the upcoming issues of CURE.


The Fault in our Stars


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OK, spoiler alert. If you plan to see the movie, don't read this blog.

Last night I went to see The Fault in our Stars, the story of two young adults who fall in love – oh, and they both have cancer. Based on the book by John Green,the main character in the story, Hazel, was actually inspired by a young cancer patient named Esther Grace who died of metastatic thyroid cancer in 2010 shortly after turning 16. Esther's own book of writing, This Star Won't Go Out: The Life and Words of Esther Grace Earl, is now available on Amazon.

But I digress, more about Esther Grace later.

Green's book has become a young adult classic due to its love story, which is hard to resist. And for those young adults who have cancer, there are many reactions I am sure they can identify with, such as Hazel trying to understand what will happen to those around her after she dies while valiantly trying to protect the ones she loves while living.

At a support group of young adults with cancer, Hazel meets Augustus, who has lost his leg to sarcoma but not his zest for life. Hazel introduces Augustus to a novel by a reclusive author named Peter Van Houten who lives in Amsterdam. We don't learn much about the book except that it's about a girl with cancer and it ends in midsentence, leaving many loose ends.

It's the loose ends and the unanswered questions that obsess Hazel, who is sure that learning what happens after the end of the of the book will help her understand her own life and death. Because Augustus still has his "wish" (the one given to all critically ill children), he cashes it in to take Hazel and her mom to Amsterdam to meet the mysterious author. What Hazel and Augustus get instead of the answers about the book, is a huge dose of reality from Van Houten, a self-centered drunk who offers them nothing but a look at what remains of a man eaten by grief. Hazel and Augustus leave abruptly when it's clear they won't even get common courtesy.

In trying to make amends, his assistant offers some sightseeing, and the first stop is the Ann Frank house. It was in the attic of this house, now a museum, that a young Ann Frank hid with her family from the Nazis during World War II. As Hazel struggles up the stairs to the tiny attic, we hear some of Frank's diary read aloud.

For me it was a highlight of the movie, because in Frank's words and the knowledge of her death in a concentration camp comes the ultimate truth that people die -- often too young and for reasons that no one understands. Death is a part of life, but what we do while alive is up to us.

From there on the movie becomes predictable. It turns out Augustus has a recurrence of his cancer and is dying. Somewhere along the way they have sex and profess their undying love. He dies. Through it all she tells us how hard it is.

My criticism with this movie as with most other cancer movies is that we do not see the ugliness of the disease. OK, she has to drag oxygen around with her, but she is always pink and healthy looking. People who are that sick with cancer do not look like they are dealing with a bad cold. Cancer destroys the body. In the bedroom scene we see a svelte Hazel when, as one reviewer pointed out, she would have been puffy as a result of steroids.

Augustus also keeps his manly shape, his hair and and his healthy skin tone until the very end. He never loses his hair or suffers the pallor of someone who is dying. These details really bother me because this is what cancer steals from us – our humanity and our selves.

But remember that I have been doing cancer for many years and to not portray what cancer really looks like is a disservice to the many friends I have lost.

Now about the real Hazel. Today when I learned that the real Hazel, Esther Grace Earl, created a number of YouTubemessages, I watched her last entry before her death.

I encourage you to watch it to see what courage looks like. Here you will see the reality of cancer.


Living with neuropathy


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No one, unless they have been there, can explain what it's like to be in pain 24/7. When I began researching a neuropathy feature for our summer issue, I have to concede that I had a couple of personal reasons for wanting to do the story: my right foot and my left foot. Since 1999, my feet have hurt. Is this a late effect of chemotherapy? No, says one expert. Yes, says another. I was treated before it was known that certain drugs can cause neuropathy, but after meeting Diana DeVoe and writing a story about her in 2011, I began to reconsider. She had had some serious chemotherapy to treat her sarcoma, with some of the agents on the list of bad actors when it comes to neuropathy. She also has some spine issues that could be part of the reason she developed the condition. According to Diana, one of the drugs I took could cause neuropathy. It all left me wondering.

More than what caused my burning feet, I wanted to know how to stop the pain. I tried Cymbalta even before it was found to be effective for severe pain--but it wasn't for me. I tried anti-inflammatory drugs. And I had seen an orthopedic who suggested it was tarsal tunnel syndrome--the foot version of carpal tunnel syndrome that affects the wrist. I had surgery on one foot that accomplished nothing except to make my foot wider and rule out tarsal tunnel. Beginning in 2000, I did the rounds every few years to see if anyone knew anything else, and, of course, I kept an eye on studies here at CURE. Nothing.

The last time I underwent testing that determined I had neuropathy, the doctor sent me to a neurologist, who entered the room and asked why I was there. "My feet hurt," I said. "Stand up," he said. When I did he asked me to close my eyes and then bring my fingers together in the front. When I did he said he didn't know why I was there and he couldn't do anything for me. I took an opiate for one summer while teaching in London, where I had to walk--a lot. It didn't help and just made me grumpy. Finally, a pain doctor in New York City who I had come to know well prescribed low-dose methadone. It worked well enough to allow me to think about other things than my feet when I needed to, and I have been on it a number of years at this point.

And no, I am not worried about becoming addicted. For those of you who don't want to take pain medication because you are worried about become addicted, listen to me: The receptors for pain are different than the receptors for addiction. Those of us who take pain medication (unless you already are predisposed to addiction) take the drugs to function. Addicts take the drugs so they don't have to function. Big difference.

The challenge with taking methodone for the first few years was getting a prescription filled in Texas. My oncologist filled it at first and then said there were now some pain specialists who could help. That was around 2008. It took me six months to find a pain doc, and then it took me another six months to find another pain doc when the first one told me I had to be drug tested every time I went in to see him--at a cost of $3,000.

If you read the summer issue of CURE and the story on neuropathy, you'll know that Michael Stubblefield is the guru on neuropathy, and his logic that those of us who have neuropathy are predisposed to it in some way makes sense to me. I don't know why I have neuropathy, but I can remember bringing my dad a hot water foot soak every night when he came home from work. It's clear his feet hurt, too, but he never talked about it.

In the past six months, my feet have worsened, and I am back on the path of trying to find a solution. I am excited that a new drug based on the toxin of the puffer fish will soon be available. When it is, I'll let you know if it works. If you have figured out something for your neuropathy, share it with us in comments or on Facebook. And join CURE for a Facebook chat about neuropathy on July 9, when Michael Stubblefield will be joining us.


Extraordinary healers


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This year's Extraordinary Healer Award contest was a special one, not only for CURE, but also for Cindi Cantril, an oncology nurse for Sutter Pacific Medical Foundation in Santa Rosa, Calif.

In front of more than 750 of her fellow oncology nurses, Cindi was awarded this year's Extraordinary Healer Award for Oncology Nursing. Cindi was highlighted as an extraordinary nurse in an essay written by Ann Tallman of Windsor, Calif., a breast cancer survivor and colleague of Cantril's. You can read Tallman's essay in the upcoming Summer issue of CURE.

Tallman described in detail not only the many ways that Cantril cared for her during her diagnosis, surgery and treatment, but also how Cantril went above and beyond to develop programs to support people living with cancer. Cantril developed a peer-to-peer support program called WINGS -- Women Inspiring, Nurturing, Giving, Supporting -- in which volunteer survivors are paired with newly diagnosed women for support. The program has been so successful that it has been expanded to help women with other types of cancer, not just breast cancer.

A men's group -- called WINGMEN -- has also grown from Cantril's efforts. She is also developing an equine program for patients to work with horses as a healing therapy.

Two other nurse finalists were honored at the reception: Noelle Paul, of Memorial Sloan Kettering Cancer Center, was nominated by caregiver Mary Kay Morelli of Sparta, N.J., and Anne Todd, from Indiana University Health Southern Indiana Physicians, was nominated by caregiver Chuck Wilson of Bloomington, Ind. for the exceptional care received by a friend during her cancer experience.

Celebrity speaker Rob Lowe joined CURE and the event's sponsors in thanking the oncology nurses in attendance for all that they do on behalf of their patients.

Lowe lost his mother, grandmother and great grandmother to breast cancer and for the past decade has devoted his time to breast cancer awareness.

It's not too early to start thinking of a special nurse to honor for next year's award! If you write a winning essay about your nurse that is chosen as one of the finalists, you and your nurse will get to join the nurses in Orlando to celebrate oncology nursing.

Essays will begin to be accepted in the fall. A list of all nurse nominees and the finalist essays will be available later this summer.


Celebrating oncology nursing


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Last night CURE held its eighth Extraordinary Healer Award for Oncology Nursing in Anaheim, California.

Of all the events that CURE does, this is my favorite because I really love oncology nurses. The event is always held on the first night of the Oncology Nursing Society Annual Congress and has become a major event for the nurses who gather for the workshops.

Every year we ask our readers to send us an essay about the nurse who they think is an extraordinary healer. They are amazing, with detail about their cancer journey and how a nurse eased their pain or paved the way for their journey.

The CURE editorial staff reads all of the more than 100 essays and chooses three finalists including a winner and invites them to ONS along with a guest. There they will read their essays in front of 800 nurses – and a celebrity guest. The winning essay will appear in the summer issue of CURE and the other two will be online.

This year our celebrity speaker was actor, producer, and author Rob Lowe, the first man to serve as the representative of Lee Denim Day in 2001. He did it to honor his grandmother Nim, who died of breast cancer in the '90s.

Then he faced his mother's diagnosis in 2004. She died eight months later. It was hard to really focus on the three finalists because every nurse in that room is a healer and it was my goal to let them know.

This year as I read the essays, there were certain phrases or sentences that I knew could be applied to all of them, so I went through the essays that didn't win and pulled phrses and sentences that would show that they were all healers.

Here they are:

"You met me in a dark place and helped to bring me out of despair."

"After I was released, you called me every day at home. I was broken physically and mentally and for the first few days blew you off. Then I gave in and started asking for help. And you were right there."

"After my diagnosis of stage 4, You told me about someone who was still alive after 30 years with the same diagnosis. You repeated it to me over and over as I struggled to find hope in the darkness."

"You have constantly treated me like I am going to live, and you believe it. I can feel it. You believe I am going to live."

"Without speaking, you transferred your understanding of my pain. You knew what I was feeling and your eyes were powerful enough to say, without a word, 'I will help you take care of your sister.'"

"Above all you make me feel safe; you allow me to plan for my future." "You make me feel like I am your only patient – and I know you have many."

"You decorated the chemo room with leis and flowers because you knew we needed to feel like we were somewhere else during chemo."

"When we talk, I feel heard."

"Instead of patient-centered care, you make it family-centered care."

"Your shoes clink, and when I heard the clink as you came down the hall, it calmed me. I heard that clink and knew everything was OK."

"Cancer sucks, cancer treatment sucks, but with compassionate, caring medical providers it is bearable. Not only bearable but as a lesson on how I want to live my life – as a whole person, connecting to others and feeling heard and understood." And finally,

Florence Nightengale wrote. "Nursing is an art, and if it is to be made an art, it requires an exclusive devotion as hard a preparation as any sculptor or painters. For what is having to do with dead canvas or dead marble compared to having to do with the living body, the temple of God's spirit. It is the finest of the Fine Arts."

As I was choosing these phrases and sentences, I recalled the power of a nurse's touch in my own life. Just before I was taken into surgery for my mastectomy I was alone for a minute in the holding area, and I recall looking at the ceiling and feeling the cold tears roll into my ears.

Just then someone I had never seen put her hand on my shoulder and leaned over into my field of vision. As she squeezed my shoulder, she said, "You will be fine. I will make sure of it."And then she was gone.

It made my fear disappear. When I look at the nurses gathered for this event, it makes me remember her.


ASCO publishes guidelines on survivorship -- finally?


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This week the American Society of Clinical Oncology (ASCO) issued three evidence-based guidelines for cancer survivorship. You can read them here. ASCO offers oncologists and others in the healthcare community recommendations on a vast array of issues. With these three added, there are now four guidelines concerning survivorship. The three areas they address in the new guidelines are neuropathy, fatigue and depression, and anxiety. Not that I want to sound ungrateful, but it's about time.

First, in regard to peripheral neuropathy. In the summer issue of CURE you will read my article on peripheral neuropathy and how sufferers are faced with a very debilitating long-term and late effect for which there is little effective treatment. In fact, the press release about the guidelines issued by ASCO says they "provide evidence-based recommendations for prevention and treatment of chemotherapy-based peripheral neuropathy."

Then, in the guidelines themselves, they say that due to "lack of high-quality, consistent evidence, no established agents are recommended for the prevention of CIPN in people with cancer undergoing treatment with neurotoxic agents." This means that they don't have any ways to stop CPIN from occurring – yet. There are some new ideas in the works but nothing has been approved.

For treatment, the guidelines say clinicians can offer Cymbalta (duloxetine), and then gives a list of other options that have shown some efficacy.

Ultimately, there is nothing new here. But what is new is that it is here. Getting ASCO to post guidelines, even if they don't give us anything helpful is a start in recognizing that survivors have a number of issues that impact our lives significantly, or as one professional says, we don't have cancer anymore but cancer has us.

In regard to fatigue, the second guideline they add, the recommendation is that survivors be screened for fatigue from point of diagnosis onward.

In addition, the guideline says that "given the multiple factors contributing to post-treatment fatigue, interventions should be tailored to each patient's specific needs. In particular, a number of nonpharmacologic treatment approaches have demonstrated efficacy in cancer survivors."

Read "exercise" there. The hopeful part of this guideline is that it will lead our cancer professionals to recognize that they need to know where to refer us to get help with fatigue. I am a major proponent of rehabilitation services for many of these needs as the rehab folks understand not only the physical but also the emotional changes that may need rehab.

For the third and final new guideline, Screening, Assessment, and Care of Anxiety and Depressive Symptoms in Adults With Cancer, the ASCO pros adapted a Pan-Canadian Practice Guideline. In general the guideline says cancer patients "be evaluated for symptoms of depression and anxiety at periodic times across the trajectory of care." Do we see a pattern here?

This evaluation should use good measures and different approaches depending on the levels of symptoms. It concludes with an overview of what happens when there is failure to identify and treat anxiety and depression. We feel rotten and have a much-reduced quality of life.

The options for care given with these guidelines are really thin, and my recommendation is that they use the Oncology Nursing Society Putting Evidence into Practice which seems to be ahead of ASCO in recommending interventions for each one of these.

Once again, the nurses beat the docs to the punch.

Overall these guidelines are a disappointment. They don't give us anything new and the disclaimer that runs with each one is double the length of the guideline. Come on ASCO, you can do better than this. We now have four, count them, four survivorship guidelines. The first one posted by ASCO in 2013 had to do with fertility and said oncologists should talk with patients of childbearing age about the impact of treatment and their options for preserving fertility.

A study late in the year says oncologists are not doing a great job of that.

Cancer survivors are growing in numbers and we would like to think that someone is paying attention to our quality of life and not just patting themselves on the back for keeping us alive. Fatigue, depression, anxiety, neuropathy and many other issues may follow us after treatment ends. It's time we put some energy into researching them and coming up with some real answers.


Inflammation and fatigue


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We now have another clue about why we are so tired during chemotherapy and for months afterward.

It's one of those "Dem Bones" issues. You know the old spiritual that says, "Toe bone connected to the foot bone, foot bone connected to the heel bone, heel bone connected to the ankle bone," and so on.

In this case, according to researchers at the Winship Cancer Institute at Emory University in Atlanta, Georgia, chemotherapy is connected to an epigenetic imprint in the DNA of breast cancer patients' blood and the imprint is connected to inflammation and inflammation is connected to fatigue.

The changes to the DNA are very complex, which I don't want to explain to you when I don't understand them. Suffice it to say that they are finding that these changes are in the DNA at six months post chemotherapy.

If you want to read the details you can find them in the journal Brain, Behavior, and Immunity. More researchers than ever are focusing on inflammation and its relationship to cancer. Ironically, this study appeared just when we were preparing the spring issue to go to press, and in it you will find a feature on inflammation as it relates to cancer and recurrence of cancer.

In the article we add another line to Dem Bones as we look at the impact of sress on inflammation. Stress does lots of nasty stuff in the body, including, perhaps, suppressing the immune system and encouraging inflammation.

So what does this all mean for those who cannot get off the couch because they are so fatigued, which, in turn, causes stress because we need to get off the couch to live. Well, it's time to take some control and find ways to fit exercise into our lives. I know, I know, you are tired of hearing it, but you will have to plug your ears if you want it to go away.

I am not talking about getting up and doing a 5 k. Just lie there and do leg lifts or get small weights and use those to get your oxygen level up. Get your blood pumping, which you can also do by raising and lowering your arms. Yoga has evidence that it helps. Exercise and other stress reducing activities also impact your chances of recurrence.

There are also inflammation reducing foods, spices and movement just as there are those foods that increase inflammation.

Check out what survivor and healthy living guru Kris Carr says about inflammation. Her response to a cancer diagnosis was to become a nutritionist.

No one thing is the answer to fatigue, but even small changes show our body we love it. So to wrap up . . .

Chemotherapy is connected to epigenetic changes in the DNA and they are connected to inflammation and it is connected to fatigue/ conversely less stress is connected to less inflammation and exercise is connected to less inflammation because it reduces stress.

No one said it would be easy.


The Little Couple has cancer


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OK, I admit that I like a reality show called The Little Couple. I happened on it one night last year and was struck by how authentic Bill Klein and Jen Arnold came across. The premise of the show is to take part in the lives of a husband, Bill Klein, and wife, Jen Arnold, MD, as they marry, build their dream home in Houston and grow their family with two adopted children from abroad. And they happen to be little people, the polite term for those who suffer from some form of dwarfism.

I was impressed with Bill and Jen and their efforts to show the world that little people are just like everyone else. I don't know their goals for allowing cameras in their lives, as it has to be incredibly intrusive, but with this show it works. As a neonatologist, Jen Arnold is a working physician, and Bill Klein is a businessman. Then, as anyone who follows the show knows, while in India to pick up their adopted daughter, Zoey, Jen begins to bleed. A call home to her gyn results in a speedy trip back to the states where she is met by her mom and dad at the airport and then begins a series of tests to understand what is going on.

It's cancer. And quickly, the reality TV show became almost too real for those of us who have been there. As the build up to the show where we learn the details of Jen's cancer, I am sure most cancer survivors were saying, "It's cancer. We know the signs." Jen was diagnosed with gestational trophoblastic neoplasm, a very rare cancer that occurs in the tissue remaining after a failed pregnancy.

There were details not on the show but in the news about her treatment that I am not sure have yet occurred. For example, according to news accounts, chemo didn't seem to work at first, so they did a complete hysterectomy. Since, on this week's episode we saw Jen getting chemo, I don't know if the surgery is to come or if they already completed it and have moved on. At any rate, I am glad that Jen continues to affirm many details of the cancer experience.

For example, when she said the side effects of chemo seemed to be cumulative, it bothered me that even now, for a professional in the medical field, she still was not told that one fact. Chemo side effects are bad and they get worse with more treatment.

She has addressed the fatigue, which no one can tell you about until you experience it. I am glad we got to go with her to look for a wig and saw the quality she found at a shop that caters to those going through chemotherapy. We have such a shop here and it makes such a difference. Boy have wigs gotten better since the nasty things I wore in 1986.

Mostly, I am glad they decided to take the camera into chemotherapy with her and not gloss over it in the story line. I am sure the producers have had some serious talks about how much is too much when the other story line at home is the beautiful little Zoey with her big eyes, seriously smart and tender big brother Will – and a father who is clearly terrified. I applaud them for keeping the reality in reality television. Those who are newly diagnosed will find a friend in Jen as they struggle with the same issues. I just hope they let her continue to talk about the changes cancer has made in her new family – like living with the fear of recurrence -- and then celebrating when the cancer stays gone.

Once again cancer reminds us that it doesn't matter who you are and what you are doing. Jen, there are many who are with you and we send you our collective strength for the journey ahead.



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