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How can everyday people help unlock the mysteries of cancer? Epidemiologist Alpa Patel, PhD, ...

 

How often do you see someone battling cancer and wish there was something tangible you could do to make a difference?

During the past 50 years, more than 2 million volunteer participants have joined the American Cancer Society's Cancer Prevention Studies and have been making a difference simply by giving a little time to fill out surveys and share information about their behaviors, lifestyle, family and personal medical history, and other information. In 1959 and 1982, adult men and women voluntarily joined the Cancer Prevention Studies I, and II, respectively. Their simple actions as study participants have helped us understand much of what we know about how cancer develops in the population.

To read more, please click here to see the full post at the American Cancer Society website.

Battling Breast Cancer: Choosing Sunlight Over Darkness

You go for your yearly mammogram, no problem. Then you get "the postcard." You go back expecting they just needed a better angle perhaps. You get the results and your head spins with words like CANCER, bilateral and major vs. minor and all sorts of things.

AttyPatty, a 60-year-old breast cancer survivor fighting invasive ductal carcinoma, shares her inspiring story - how she coped with the diagnosis, how she decided on treatment, dealing with hair loss, what gets her through it and lessons she learned that might help others. You can keep up with AttyPatty's story by visiting her journey at WhatNext.com.

WN: How did you discover that you had cancer?

It started with an innocuous message on a postcard from my health care provider, sent four days after my routine mammogram:  “The results of your mammogram demonstrates a finding in your breast that needs to be looked at further. This is not uncommon. In many cases, such findings show that there is nothing to worry about. We would like you to return for a follow-up exam. Please call us within the next week to make an appointment for this follow-up exam.”

I called in and was scheduled for another mammogram right away. I never felt tempted NOT to call, to avoid it, evade it, hide-my-head-in-the-sand and deny it. Not because I am brave; no, because the gravity of the message didn’t sink in at the time. I didn’t think much of it. Certainly, my brain did not immediately rush to think, “Cancer.” I just needed another mammogram, in order to magnify specific areas.

So I went to the Breast Imaging Center completely carefree and healthy. Ignorance is, indeed, bliss.

What the next mammogram showed, however, was: “THINGS TO BE AFRAID OF.” Words like “bilateral” meaning there was something on both breasts. “Minor calcifications” - but how can they call them “minor” when minor is bad and major (large) is ok? “Minor” makes them sound trivial. But “minor” means something really major. “Minor” means there could be cancer. “Minor” means suspicious. The specks on my mammogram were suspicious. Another acronym I had never heard of: “BIRAD” and a rating of “category 4.” What is this – a tornado? The highest rating, meaning probably malignant, is 5. My rating caused “intermediate concern.”

I had to schedule a biopsy, actually two biopsies, for both breasts. But I had travel plans, a non-refundable airline ticket. Couldn’t they wait until I returned from my trip in two weeks? I should have felt worse than I did when the oncology nurse said, “No.” I was only disappointed that I had to delay my trip and a little pissed that it was costing me $150 to change flights. I was still in that hopeful place, thinking everything would turn out all right.

A week after the biopsies came “The Call.” I knew right away that the news was bad when Dr. House (really) told me it would be better if I could sit down. I was in Costco, which always had furniture on display, so I sat down. In a calm, professional voice over my cell phone, Dr. House gave me all the clinical information. The location: right breast. The size: .3cm. The type: infiltrating ductal carcinoma. The histology: Stage 1. The receptor: estrogen. All in all pretty bad, but it could be worse. It could be untreatable.

I would need surgery, maybe a lumpectomy and radiation, or maybe a mastectomy, in which case I wouldn’t need radiation. I would definitely need hormonal therapy for five years, and the tumor would be tested to determine if I needed chemotherapy. Dr. House talked and I made notes, sitting there in a Costco lounge chair, because I knew I would forget at least half of what she was saying. It was surreal.

So the long story short is that my breast cancer was discovered on a routine mammogram.

WN: How did you determine what treatment path you would take?

I always felt in control of my treatment decisions. At Kaiser Permanente (my health care provider – an HMO), the first step in determining treatment is a “Group Visit” – starting with an intake interview with the oncology P.A. followed by a 30-minute video and question and answer period with the oncology nurse and surgical P.A. There were four other women in this group visit with me and I had to assume the P.A. didn’t mean it literally when she said, at the end of the class, “This is probably the last time you will see one another….”

The following day, I had an appointment with the cancer team assigned to my case, including an oncologist, a radiation oncologist, an oncology nurse practitioner and a breast surgeon. Prior to that meeting, they had each reviewed all my tests and medical records, and had discussed my case with each other and with the hospital’s tumor board. Each had something different to say, but they were all pretty much on the same page. Small tumor. Lumpectomy. Radiation. Hormone therapy. Jury still out on chemotherapy. It was a long three hours with lots of information to absorb.

I was given every available test to determine my cancer type, including the Oncotype test to determine if I would benefit from chemotherapy. My tumor was measured, biopsied, and tested. The tumor was larger that the initial biopsy indicated – 2.5 cm, about an inch at the longest point. So I was upgraded from Stage 1 to Stage 2, without even a glass of champagne. Chemotherapy was indicated to prevent recurrence, assuming the surgeon removed the entire tumor and got “clear margins.”

The margins proved to “clear” although very close on the anterior side. Still, as the surgeon told me, “A clear margin is a clear margin.” I was ready to start chemotherapy, if I wanted to. I did. I wanted to fight this disease with every possible weapon in the arsenal.

My doctors were great about talking to me, talking to my husband, talking to each other. I always felt confident I was getting my questions answered, getting enough information and getting in a way that was comprehensible.

Having the information I needed led me to make the decisions about my treatment that were right for me.

WN: What has surprised you along your cancer journey?

Meeting so many survivors in the most unexpected places – from among friends I have known for a long time to complete strangers. It’s almost as though we learn a secret handshake or develop radar. Some illustrative examples:

I was in church in Montana in December – cold, snowy weather and everyone wears hats and scarves. I looked no different from anyone else, despite the fact that my hat covered a bald head. Yet a youngish man approached me and spoke, rather hesitantly at first, saying, “ Excuse me, I probably shouldn’t say anything, but…” The he just came out with it – “Are you in chemotherapy?”” I could have said, “It’s none of your business,” or “I didn’t think it showed.” I could have been rude, or sarcastic, or hurried. But I simply said, “Yes, I am.” He said, “I am a two-time survivor.” He pointed to his face, where there was a small dent and a surgical scar under his eye – something I hadn’t really noticed. I thought about my own dent – I guess we all have them, some you just can’t see. He went on, “I shouldn’t even be here. I was Stage IV, but here I am ten years later.” Some tears filled my eyes and it was all I could do to say, “Thank you.” He introduced himself, shook my hand and then we hugged. He gave me a great gift that morning.

My husband and I ride motorcycles with a group of friends we have known for 30 years. On one of our rides, just after I had been diagnosed, one of the women told me that she had breast cancer 20 years ago and had a mastectomy. All these years I have known her and I never knew! She told me that she hadn’t ever told anyone in our group. (I’m the opposite – I tell everyone!) We spent most of the night sharing our experiences. It seemed good for her to be talking about something she had kept hidden for so long and it was certainly good for me to hear from a long-time survivor.

Pedaling in the gym about a month ago, a gentleman on the stationary bike next to me asked me what kind of cancer I had. When I answered, he told me that he, too, was a breast cancer survivor. He had cancer in both breasts, first when he was 17, the second time when he was 19. He was in the army and the only treatment available was mastectomy and mega doses of Vitamin C. He is now 75 and still cancer-free! We talked about the latest research and studies published in medical journals. Like me, he had become obsessed with learning about cancer, only he has had 50 years to study, and I have just begun. I learned a lot from him while riding along for 8 miles.

At my high school reunion last week, two of my friends whom I haven’t seen in 10 years told me they had breast cancer. The three of us talked and laughed about our mutual experiences of being “slashed, poisoned, and burned.” One was a 5-year survivor, one a 12-year survivor. Although we hadn’t remained close after high school, our experiences created a strong bond and we have been in contact since the reunion and will probably stay in touch.

It constantly surprises me that there are so many people out there who have survived cancer – and how much support I feel from talking to survivors, friends and strangers alike. We are living with cancer and the key word here is “LIVING.”

WN: In your journey you share your experience with losing your hair using scarves.  What advice would you give to a woman about to undergo treatment, and frightened of losing her hair?

First of all, I would say not to worry but that would probably be useless. I knew I would lose all my hair so I began to prepare myself. I never really wanted to use wigs because 1) wigs are uncomfortable; 2) good wigs that look natural are expensive; 3) cheap wigs look like wigs; 4) I wasn’t ashamed if people could “tell” that I had cancer. I wasn’t afraid of that cancer-patient look – the bald head, the stark eyes without lashes or brows, the pale skin. When I was diagnosed, I felt like I was given the biggest hall pass in the world, a can’t-argue-with-that, get-out-of-jail-free card. I felt entitled to do whatever I needed to do – take time off work, beg off volunteering for this or that, napping in the middle of the afternoon, whatever I needed to do to fight this disease. So losing my hair was a badge of honor, a beacon that signaled, “Hey, this is what I am going through – deal with it!”

I found lots of videos on YouTube about how to tie headscarves. I found that women look beautiful with their hair all tied up in brightly colored scarves with knots on one side or in back or in front, with long ends twisted and wrapped around the head. I had fun shopping for exotic scarves and vintage pins to use to hold them. I bought long earrings to go with them.

When my hair started falling out in sheets, I had a head-shaving party. A hair stylist friend a brought over her shears and about 20 people came over to drink wine and watch. It was great fun and it helped to have so many people to egg me on, laughing and joking and taking pictures.

Every day since then, I look forward to choosing which scarf to wear, how I am going to wrap and tie it, which pin to place where, which earrings to go with. Now that my hair is growing back, I wear hats more often because I am proud to show off my neckline and “sideburns.” It reminds me of the Mary Quant/Twiggy look with a watch cap and a short Beatle cut.

I guess what I would tell others it to view hair loss as a chance to do something fun and different. And when the hair starts to grow back, buy a baby hair brush. It works great.

WN: What did you wish you knew at the beginning of your journey that you know now?

My husband and I moved into my grandmother’s hundred-year-old Victorian 30 years ago. It was in a condition of “deferred maintenance” (read: falling down dilapidation). We thought it would be fun to fix it up. We are still fixing it up. It has been an interesting, challenging, sometimes discouraging, often rewarding journey. I’m glad we did it, but if we had known 30 years ago what “fixing it up” really meant, I doubt we ever would have started.

So my answer to this question is, “Nothing.” If I had known at the beginning all I would go through on this journey, I would have felt so overwhelmed, I doubt I could have coped. I have taken each step as it has come along, putting one foot in front of the other, seeing a little way into the future, looking back to see how far I’ve come.

WN: Funny things often happen to cancer fighters. Can you share something that made you LOL?

Chemo brain has made for some funny moments – like the other day when I thought it was good idea to put the soap pump from the kitchen sink into the dishwasher to clean it. It wasn’t until the kitchen floor was covered in soap suds that I realized it wasn’t the smartest thing I’ve ever done.

In addition to finding humor on this journey, I have also discovered some insights. Twelve years of Catholic school instilled in me the habit of prayer. To help me on this journey, I have used prayer, meditation and guided imagery to calm, relieve and inspire. Five days before starting chemotherapy, I was meditating, feeling calm, peaceful. I saw three paths before me.

On the left was a long, dark tunnel with an opening large enough for a train. I walked into the empty entrance. It was cool. The walls were cement and damp. There was dim light at the mouth of the tunnel and reflected light further down. As the tunnel receded there was no light at all. I could walk blindly through that tunnel feeling cold and damp, feeling my way through the darkness without knowing what was ahead.

To the right was, not a path, but an abyss. I gingerly walked to the edge and, looking over, I could see a steep cliff with a switch-backed path leading precipitously downward. It looked like Dante’s circles of hell. Nothing grew on the rock walls of the cliff and I couldn’t see the end of the trail. It just kept switching back and forth, downward, ever downward. One false move and I would slide – no stops, nothing to cling to, no end to the unfathomable depth.

Ahead of me was a hard packed earth pathway beneath a wooden arbor, painted white with worn spots, where hands had touched the posts. Wisteria grew overhead reaching across the beams, filtering the sunlight, its leaves yellowed by the season. Purple flowers still clung to the vines. Roses and daisies grew alongside. At the head of the path grew a maple tree, its leaves blazing red and orange and yellow. At the end of the path was a weeping willow, the Crayola color called “spring green”. Its branches were full and heavy and reached the ground, giving shade beneath it, cool and lovely. I could dawdle along this path.

I had a choice. I could make myself miserable and end up in a dark place. I could let myself be scared and end up in a dangerous place. Or I could find some warmth and sunlight and have some fun along the way. It’s a choice we all have at every juncture of this journey. I chose the wisteria-covered path.

 

Caring for a Mesothelioma Patient

 

Providing care for a mesothelioma cancer patient – or anybody who has any form of cancer, for that matter – can be a continuously difficult process. Among treatment concerns, emotional support or handling of domestic issues, providing care can be tireless yet impactful.

Mesothelioma poses unique challenges because of its aggressive nature, some of which require caregivers to take an increasingly active role in keeping or improving the quality of life of the cancer patient. Caregivers for those battling mesothelioma may find themselves taking on more tasks at a fast pace.

Caregiver Responsibilities

The person most often responsible for caring for a mesothelioma patient is normally a patient’s family member, a close friend or a nearby neighbor. Because of the physical and emotional dedication that is required to properly provide care, a strong pre-existing relationship is typically needed between the caregiver and cancer patient.

If you are charged with caring for a mesothelioma patient, some of your responsibilities may include:

Scheduling/Organizing daily activities associated with cancer care

Providing travel assistance for treatments and doctor visits

Assisting with household chores (cleaning, cooking and related activities)

Handling/Managing the patient’s financial expenses

Facilitating communication among the patient’s family members and friends

Providing physical, mental and emotional support each and every day.

Understanding the details of mesothelioma also becomes important when becoming a caregiver.

Because each cancer differs, mesothelioma has unique treatment and prognostic factors that the caregiver should be aware of while providing care. Patients often have difficulty breathing, and can need to have oxygen with them at all times.

They also get fatigued easily. And they can have pain and swelling in their abdominal area.

Some symptoms are helped with pain management or other methods of palliative care. Some side effects of treatment for mesothelioma patients, such as chemotherapy, can be debilitating.

Speaking with the patient’s doctor can better answer any questions that you may have about the disease or what to expect in the near future. Additionally, caregivers should be aware that countless support resources are available to help them properly care for a mesothelioma patient, as well as themselves.

Impacting Lives

Despite the challenging responsibilities associated with providing care to a cancer patient, the impact of these caregiver activities cannot be understated. As you will be heavily depended upon during treatment periods, you will find opportunities to contribute to the physical and emotional well-being of another individual.

This includes providing hope, optimism and overall encouragement. As they attempt to persevere through battling cancer, you will see how your words and actions can spark hope and insight energy.

Bio: Mark Hall is a writer for the Mesothelioma Center. Between his interests in environmental health and his writing experience, Mark is committed to communicating relevant news and information regarding the dangers of asbestos exposure and breakthroughs in mesothelioma treatments.

Patient Engagement - The New Doctor-Patient-Caregiver Relationship!

Editor's Note: Caregiver expert Rob Harris, of RobCares.com shares his evolution from being a "yes, doctor" type of guy to an inquisitive and persistent caregiver and advocate for his cancer-fighting wife. His experience and insight just might help to enhance your relationship with your doctor and care team. We'd love to hear your thoughts.

By Rob Harris

So much has changed since 1990 when I first enlisted to be the primary caregiver to my wife.

I can personally attest that a different mindset has engulfed the medical universe.

As a "baby-boomer", my parents raised me well. I learned to respect authority and my elders. I did not question those in charge. My parents, considered to be members of the "traditionalist" age group, grew up during the World War II era, when the military was not quite worshiped, but certainly revered. Amongst their populations, authority was never to be questioned. Doing so would label the one doing so as a malcontent.

As a caregiver and a person in 1990, I believed in treating everyone with respect, which I still adhere to today. In 1990, I rarely, if ever, questioned someone in authority. To me, those in the medical community stood side-by-side with our country's political and spiritual leaders, military officers, and corporate executives.

The result? I did what I was told and did not contest decisions made by those in charge. In other words, if I didn't like what I was told, I learned to live with it.

Today, the "Generation X" and to a lesser extent, the "Generation Y" populations of younger leaders are influencing and reshaping society in significant ways.

Today's generations grew up with computers, where vast amounts of knowledge are but a keystroke or two away. Hence, if they did not believe what they were told, they could go online and conduct research to determine the validity or legitimacy of the issue at hand. This next wave of professionals, we find, adheres to the philosophy, "Your title doesn't impress me. Your knowledge and abilities are what will convince me to believe and follow you. If I don't like what you have to say, I'm going to contradict you or, I'm going to check out and go elsewhere."

Are they being disrespectful?

Not as far as I'm concerned. What they are being is "confident" and "independent thinkers."

I admire them for this. In fact, society in general has been trending in this direction for quite some time.

And thus, in 2006, when my wife discovered she was about to battle a much deadlier form of cancer, and my role as a caregiver would be dramatically more involved than my initial experience, I immediately anointed myself an "honorary Gen X'er." My acceptance of a medical dictatorship was gone. A very different culture exists, and I was ready to be a part of it....well, an older and wiser part, anyway.

Become a Healthcare Consumer

In 2006, my wife was told she had a very rare and deadly form of cancer, one with a cure rate of less than 30 percent. Additionally, in order to survive over the upcoming few months she had left to live, she would need to have her leg amputated as soon as possible.In 1990, we would have listened and not questioned the orthopedic oncologist who spoke those words to us. However, in 2006, with computers and the Internet readily available, we became healthcare consumers. We decided to shop around for a better deal, a better prognosis and hopefully, a much better outcome.

After traveling across the country to interview oncologists and orthopedic oncologists/surgeons, we selected the third set of doctors that met with us. We discovered them on the Internet, where we learned they specialized in my wife's form of cancer.

Once treatment began, we continued to research and learn all we could about her illness and treatment options. We also wanted to make sure we were being treated properly. Once we grasped what that entailed, we insisted upon it from that moment on.

Fortunately, we didn't have to do so very often. The doctors, nurses and other medical providers at our hospital of choice, the Moffitt Cancer Center in Tampa, FL, were fully engaged in that philosophy...well, for the most part, anyway. In 2006, family caregivers were still lacking the respect and recognition they deserved, not unlike what may be the case within many health care establishments today. Fortunately, we were able to overcome that hurdle after several strategic and calculated moves on our part and some open-mindedness on theirs.

What we evolved into was a "triad." The patient engagement process consisted of my wife (the patient), myself (the caregiver) and our medical team. All worked hand-in-hand throughout. Rather than telling us what we would have to do, they explained our options. It was as cohesive a decision making process as it could possibly be. We actually felt they treated us with the same care and attention they would have shown to their own family members.

Was this a legitimate emotional attachment?

It is the real deal!

Today, six years later, we are still friends with many of the doctors, nurses, pharmacists and others that we interacted with at Moffitt.

Patient Engagement is More than Patient Satisfaction

Patient engagement is more than patient satisfaction. It is patient involvement in every aspect of their care, including the research conducted to determine the proper course of action to be taken, to the meals they are served, and even the gowns they are "made to wear." As a case in point: my wife refused to wear those hideous green gowns with the air vents in the back. She always brought and was never denied the opportunity to wear pajamas.

Rather than feeling as if we were not important and a non-factor in the decision-making process, we felt completely engaged throughout. And that, we believe, contributed to my wife being cured of cancer.

Adding the Right Dentist to Your Oncology Team

 

Editor's Note: Many people don't realize that when hit with cancer, you really need to make sure your teeth are in as good a shape as possible. WhatNext-er and blogger Robyn Stoller recently wrote an informative blog post about this topic, which she has graciously allowed us to share with you.

By Robyn Stoller  (from her blog CancerHawk)

While researching content for “WTF is Magic Mouthwash or Miracle Mouthwash?” & “Dental Care & Care”, I now realize the importance of working with a dentist who really understands cancer before beginning cancer treatments as well as throughout treatment and in some cases, even after treatment ends.

But here’s the dealio (as my daughter always says)…

There is a type of dentist called a “dental oncologist”.  Dental oncologists are not prescribing oncologists- they don’t prescribe chemotherapy and they don’t help “cure” your cancer…. instead, they help cancer patients hopefully avoid or minimize one of the most painful & potentially dangerous side effects resulting from cancer treatments…. mouth sores, ulcers, infections, bleeding, etc. (click HERE for more on the potential oral complications from the Natl Institute of Dental & Craniofacial Research)

Since dental oncology is a relatively new area of expertise, there may not be a specialist in your area. So the next best thing is to find a dentist who truly understands the “ins & outs” of oral care during cancer treatments.

A few tips to help cancer patients find that “right” dentist…

1.  Interview the dentist – either on the telephone or in person – to see if he or she is the best fit to be a member or your oncology care team.  Remember, depending upon your proposed treatment, oral side effects of modern cancer therapies can range from slightly annoying to a royal P in the A.   You need a dental professional that you trust on your side to help you through the tuff times.  Here are a few questions you can ask:

Have you ever treated patients with cancer or are you comfortable treating patients with cancer?

What kind of oral side effects can I expect once I begin my cancer treatment and what can you do to help?

Are you comfortable requesting lab results/blood work from my oncologist’s office and do you know which results are important to monitor while I’m going through cancer treatment?

Will you communicate directly with my oncologist?

What can I expect with regard to my oral health and care in your office after my cancer treatment is complete?

2.  Be prepared that the dentist you’ve seen for years may not feel comfortable treating you after learning of your diagnosis of cancer. You should understand that this is most likely because he or she does not feel comfortable with his or her level of proficiency in the area of cancer care, and has nothing to do with you personally.  Don’t take it as a rejection, but rather an invitation to seek care from someone who better understands what you are, or will be, going through.

 
3.  If there is not a dental oncologist or a dentist that focuses on oral health care during cancer care in your area, seek out the services of a periodontist.  Periodontology is a specialty recognized by the American Dental Association, and periodontists have a strong background in understanding how oral health relates to systemic health.  Some periodontists focus their practice on oral medicine (while others focus on placing implants or gum surgery).  Beyond a dentist with experience in cancer care, a periodontist may be your best bet.

***Many thanks to my very favorite dentist Dr. Dennis Abbott of Dental Oncology Professionals of North Texas for compiling this list of tips & questions to ask when interviewing dentists.  YOU rock Dr. Abbott!***

Jump, Baby, Jump

Editor's Note: This post about parenting a child with cancer, and how one mother learned how to let her child still be a child, first appeared on the blog, 32in32. We were so inspired by it, and the overarching lesson here, that we received permission to share it with you.

By Pauline Hawkins

Ian is a tough little boy. He runs fast, jumps high, and falls hard. If he cries, it’s because he really got hurt. His Cancer battle has made him stronger than I could have imagined, no thanks to me. My husband deserves all the credit for this one.

After Ian’s diagnosis, he needed to have a medi-port surgically placed in his chest. The port is a round device that stayed under his skin and connected to a major vein; it provided easy access to his blood stream for blood work and infusions during radiation and chemotherapy. The surgeon told us to keep Ian still and quiet for the rest of the day. He was groggy when he woke up, so I didn’t think it would be too difficult to keep him quiet. Ian had other plans. By the time we put on his seat belt, Ian asked if he could jump on the trampoline when we got home. I said, “Absolutely not!” Dave said, “We’ll see.” I promptly glared at my husband.

When we got home, Ian asked, “Can I jump, Mom?”

“No–”

“If you want to, Bubby.” Dave cut me off. I was furious. Didn’t he hear what the doctor said? How could he be so careless? I hissed as much in his face.

Dave stood his ground and firmly told me, “If my son wants to jump on the trampoline, he’s going to jump on the trampoline. Don’t you think he’d tell us if he felt sick or weak?”

It made sense, but I wasn’t ready to concede. “Fine. But don’t expect me to watch.”

“That’s fine. I’ll be out there with him.” He went out back with Ian while I stayed in the house and cried. I didn’t want Ian to get hurt. He had so much pain in his life already. How could my husband put Ian in more danger? Didn’t he realize that Ian’s life was so precarious right now? Didn’t he realize that the doctors couldn’t guarantee that Ian would see his fifth birthday?

And then it hit me. Dave realized it before I did. Dave wasn’t going to let Ian miss out on any experiences Ian was physically capable of doing. If his son wanted to jump, he was going to jump. How would I feel if someday Ian could no longer jump? How much pain would I feel if I denied Ian a chance to experience the weightless joy he felt on the trampoline?

I heard Ian squeal with joy as he said, “Watch me, Daddy!”

Dave’s response: “Jump, Bubby. Jump.”

I finally understood. I vowed to let Ian judge his own limitations from that point on.

It has been hard not to smother him with a mommy blanket, but I’ve kept my promise. Whatever sport or athletic activity Ian wants to try, we let him. It was hard watching kids throw Ian to the ground during jiu jitsu, but he laughed it off and would give it back. Once I did request that the coaches organize the players during hockey warm-ups because the other team was skating in the wrong direction, and Ian was knocked to the ground three times before the game had started. (I then imagined myself slapping the crap out of the man who told me Ian had to grow up sometime.) My instincts are to protect him, but Ian is tough. He shakes off most falls. I know it’s serious when he cries, and he rarely does that.

That is until yesterday. At his hockey game, Ian fell hard. He was lying on the ground, not moving. He was crying, loudly. The coaches turned off the game clock and had all the players take a knee. I have never seen them do that before. I ran to the rink wall and tried to figure out if I could jump it to be by Ian’s side. He was so far away from me. I couldn’t see if there was blood or a dangling leg. I imagined the worst. My husband walked over and stood by me; he rubbed my back while I tried to hold back the tears. Dave was calm, which calmed me down. After what seemed like an hour (probably more like two minutes), Ian stood up. Everyone clapped for him. I was holding my arms open, expecting him to skate to his mommy so I could comfort him. Ian shook his head and then skated to his position. I wanted to say “No. He’s hurt. Make him come to me!” But then I looked at my husband. Dave nodded his head in pride and approval. I conceded instantly. My heart sang out, “Skate, Bubby. Skate.”

To see the original post, please click here. You can also follow Pauline on Twitter @32in32.

Jump, Bubby, Jump

Editor's Note: This post about parenting a child with cancer, and how one mother learned how to let her child still be a child, first appeared on the blog, 32in32. We were so inspired by it, and the overarching lesson here, that we received permission to share it with you.

By Pauline Hawkins

Ian is a tough little boy. He runs fast, jumps high, and falls hard. If he cries, it’s because he really got hurt. His Cancer battle has made him stronger than I could have imagined, no thanks to me. My husband deserves all the credit for this one.

After Ian’s diagnosis, he needed to have a medi-port surgically placed in his chest. The port is a round device that stayed under his skin and connected to a major vein; it provided easy access to his blood stream for blood work and infusions during radiation and chemotherapy. The surgeon told us to keep Ian still and quiet for the rest of the day. He was groggy when he woke up, so I didn’t think it would be too difficult to keep him quiet. Ian had other plans. By the time we put on his seat belt, Ian asked if he could jump on the trampoline when we got home. I said, “Absolutely not!” Dave said, “We’ll see.” I promptly glared at my husband.

When we got home, Ian asked, “Can I jump, Mom?”

“No–”

“If you want to, Bubby.” Dave cut me off. I was furious. Didn’t he hear what the doctor said? How could he be so careless? I hissed as much in his face.

Dave stood his ground and firmly told me, “If my son wants to jump on the trampoline, he’s going to jump on the trampoline. Don’t you think he’d tell us if he felt sick or weak?”

It made sense, but I wasn’t ready to concede. “Fine. But don’t expect me to watch.”

“That’s fine. I’ll be out there with him.” He went out back with Ian while I stayed in the house and cried. I didn’t want Ian to get hurt. He had so much pain in his life already. How could my husband put Ian in more danger? Didn’t he realize that Ian’s life was so precarious right now? Didn’t he realize that the doctors couldn’t guarantee that Ian would see his fifth birthday?

And then it hit me. Dave realized it before I did. Dave wasn’t going to let Ian miss out on any experiences Ian was physically capable of doing. If his son wanted to jump, he was going to jump. How would I feel if someday Ian could no longer jump? How much pain would I feel if I denied Ian a chance to experience the weightless joy he felt on the trampoline?

I heard Ian squeal with joy as he said, “Watch me, Daddy!”

Dave’s response: “Jump, Bubby. Jump.”

I finally understood. I vowed to let Ian judge his own limitations from that point on.

It has been hard not to smother him with a mommy blanket, but I’ve kept my promise. Whatever sport or athletic activity Ian wants to try, we let him. It was hard watching kids throw Ian to the ground during jiu jitsu, but he laughed it off and would give it back. Once I did request that the coaches organize the players during hockey warm-ups because the other team was skating in the wrong direction, and Ian was knocked to the ground three times before the game had started. (I then imagined myself slapping the crap out of the man who told me Ian had to grow up sometime.) My instincts are to protect him, but Ian is tough. He shakes off most falls. I know it’s serious when he cries, and he rarely does that.

That is until yesterday. At his hockey game, Ian fell hard. He was lying on the ground, not moving. He was crying, loudly. The coaches turned off the game clock and had all the players take a knee. I have never seen them do that before. I ran to the rink wall and tried to figure out if I could jump it to be by Ian’s side. He was so far away from me. I couldn’t see if there was blood or a dangling leg. I imagined the worst. My husband walked over and stood by me; he rubbed my back while I tried to hold back the tears. Dave was calm, which calmed me down. After what seemed like an hour (probably more like two minutes), Ian stood up. Everyone clapped for him. I was holding my arms open, expecting him to skate to his mommy so I could comfort him. Ian shook his head and then skated to his position. I wanted to say “No. He’s hurt. Make him come to me!” But then I looked at my husband. Dave nodded his head in pride and approval. I conceded instantly. My heart sang out, “Skate, Bubby. Skate.”

To see the original post, please click here. You can also follow Pauline on Twitter @32in32.

Journey of the Week: Meet Breast Cancer Fighter, CranburyMom

WhatNext-er CranburyMom is a cancer researcher and is also fighting breast cancer: invasive (infiltrating) ductal carcinoma. She is one of the greatest supporters on WhatNext, having shared her journey and offering meaningful insight to others who share her specific diagnosis. We're very thankful that she has been so generous in sharing her experiences with others in a way that is helpful and encouraging.

What has surprised you the most about your cancer journey?

Accepting the diagnosis - Me? Cancer? Now?

How has connecting with others going through similar experiences made a difference?

Huge relief - knowing that I am not alone. I did not feel that I had strong support from my immediate family then. So sharing the dark moment with others who went through it (and understand me!) was the best prescription.

What are your hobbies and/or interests?

I love so many things and many interests - just not enough time and $ to do them all. Right now, I am very much into biking (thanks to fellow WhatNext-er Leepenn!). Love to run on a trail, walk in the woods, listen to birds singing, etc. I make Origami jewelry and teach people how to fold. The thing I love the most is to simply have a cup of coffee or tea with good friends.

You have been active with the American Cancer Society? How has this influenced you?

I am a huge fan of ACS. I was a cancer researcher and presented my works. Experts get together from all over the world and exchange knowledge and study results. You got to believe that we will conquer this terrible disease. This is one of main reasons to become an active member for WhatNext. 

Favorite guilty pleasure song – the one you like to sing more than any other!

I love to listen to Sunday Morning by Maroon 5 - wonderful song to listen in a rainy day. Sexy and I know it, ... works anytime!

Acupuncture for the Cancer Survivor

 

By K. Simon Yeung, PharmD, LAc, Manager, "About Herbs" website, Memorial Sloan-Kettering Cancer Center (MSKCC)

In the last two decades, many cancer survivors have turned to complementary and alternative therapies, including acupuncture. According to the National Center of Complementary and Alternative Medicine, acupuncture is considered a form of mind-body medicine. A report by the Centers for Disease Control indicated that more than 8 million Americans use acupuncture to treat different ailments, and a recent study found that more than 10% of cancer survivors use acupuncture. Based on scientific evidence and additional research, major cancer hospitals have incorporated acupuncture using an integrative approach for more effective management of the many symptoms related to cancer and cancer treatment.

History

While acupuncture is thought to have originated in Asia more than 2,000 years ago, evidence indicates that it is not unique to this region. Obscure tattoo patterns found on mummified bodies in Europe and in South America suggest that treatments similar to acupuncture were used by other ancient civilizations.

However, the form of acupuncture practiced today is based mainly on a comprehensive standardized system which evolved in China around half a century ago.  Other countries such as Korea and Japan also developed unique styles. Traditionally, acupuncture is often used in conjunction with herbal medicines to treat diseases. In Western medicine, it has become a viable component of supportive care to treat a range of symptoms, conditions, and treatment side effects, as well as to assist in lifestyle changes.

How does it work?

Acupuncture treatment involves the stimulation of defined acupoints on the body using ultrathin needles or electricity for therapeutic effect. In traditional Chinese medicine, the human body surface and the internal organs are thought to be connected by meridians through which “Qi,” a form of energy, flows. Pain and disease are believed to occur when the flow of Qi is blocked. Stimulating acupoints on the meridians can heal by restoring the flow of Qi.

In biomedicine, acupuncture has been shown to stimulate the secretion of beta-endorphins to relieve pain. Further research suggests that acupuncture treatment can modulate other neurotransmitters and the immune system. Some hypothesize that the positive interaction between the practitioners and patients, as well as the placebo effect may also contribute to the therapeutic properties of acupuncture. The exact mechanisms that account for the various effects of acupuncture are still under investigation.

Acupoints can also be stimulated manually using finger pressure. This is known as acupressure. Moxibustion is a related technique that uses heat generated from the burning of an herb to stimulate the acupoints. However, this method is not commonly used in the cancer setting due to emission of smoke and fire hazards.

Clinical effects

Acupuncture is one of the most studied forms of complementary medicine. Data from clinical trials generally support its use for arthritis, migraine headache, low-back pain, menstrual pain, and to improve outcomes in women following in-vitro fertilization. Some studies have also demonstrated the cost-effectiveness of acupuncture compared with standard treatments.

Role in Cancer Treatment

While acupuncture cannot be used to treat cancer, it can address many symptoms associated with cancer and cancer therapies. Data from several major clinical studies show promising results. For example, acupuncture can control chemotherapy-induced nausea and vomiting. Stimulating a point above the wrist by electricity was more effective than antiemetic drugs in controlling nausea.

Many breast cancer survivors have hot flashes caused by drugs used to suppress estrogen. One study demonstrated that acupuncture is as effective as prescription drugs in controlling hot flashes with virtually no adverse effects. In addition, acupuncture helped increase libido in this population. Some breast cancer survivors are treated with drugs known as aromatase inhibitors to help prevent recurrence, but these drugs can cause joint pain and stiffness. One study found that acupuncture is effective in reducing these side effects, thereby allowing the drug regimen to be continued.

Acupuncture has also been shown to improve muscle weakness and dry mouth caused by chemotherapy and radiation therapy in patients with head and neck cancer. A study confirmed that by stimulating a point on the index finger, patients experienced relief from dry mouth. There are also reports showing reduced nerve pain associated with neuropathy and reduced swelling and discomfort caused by lymphedema when patients receive acupuncture treatment. Clinical trials are being developed to study these positive effects.

Safety and Contraindications

Acupuncture is generally safe and well tolerated by patients including children. Adverse events are rare but can include bleeding, bruising, infection, and puncturing of internal organs. Pregnant women, those wearing pacemakers, and those with low platelet counts should inform their practitioners before receiving acupuncture. Some conditions require continuous treatments in order to achieve long-term effect.

Training

Acupuncturists are well-trained healthcare professionals. Most have a Master’s or more advanced degrees. Some acupuncturists also receive specialized training in treating cancer patients. Many states consider acupuncturists to be primary care providers, meaning that no special referrals are needed. When seeking a practitioner, it is important to verify their credentials and experience. Consumers can check the license or registration of practitioners online through their state medical board licensing agencies. The National Certification Commission for Acupuncture and Oriental Medicine (NCCAOM) also maintains a Web site to help consumers locate qualified acupuncturists at http://www.nccaom.org/find-an-acupuncture-practitioner-directory. Acupuncture treatments are generally affordable and are covered by some healthcare insurance policies.

Acupuncture is a safe, effective, and relatively inexpensive means to address many cancer- and cancer treatment-related symptoms. Cancer survivors are encouraged to explore this option to help maintain quality of life. 

Advice to a Cancer Patient Facing News He Didn't Want, by "e-patient Dave" deBronkart

 

We are honored to share this guest post from cancer survivor,  "e-patient Dave" deBronkart. An international keynote speaker on healthcare, e-patient Dave is highly regarded for his expertise in helping patients become more empowered and engaged. In this post, which orginally appeared on Dave's blog, Dave shares his powerful advice to someone who got the news nobody wants to hear and is scared of disappointing loved ones. 

by Dave deBronkart

Recently an online friend from long ago introduced me to someone who's got a cancer case that's not going well, looking for any advice and counsel. He wrote today to a big cc list, with unfavorable news (I'm obscuring all details), and I replied.



In the email he expressed understandable concern about the next treatment, discussed his physician's news about the odds, and said he doesn't want to disappoint anyone. This is my response.



Note: I'm not saying anyone should be like me, nor that I'd say this to any other individual. This is just my response to this one person. I'm posting because I hope it will be of use to someone else someday - perhaps light a candle of hope and determination in someone.



________________



K,



This is not the news we want, but since H. introduced us (as we're both cancer patients) and you cc'd me on this, I'll presume you want feedback and here it is.



(Folks, this will be long, and blunt, so feel free to ignore it.)

First, I feel for you. I faced imminent death (median survival 24 weeks) three years ago so I know what it feels like. For my disease the web sites said "almost all patients are incurable," "prognosis is grim," "outlook is bleak." And I have friends who are still going through this all the time. Visited one today.



And, here I am three years later - my doctor's main advice after this year's physical was back to normal: I should start losing weight, like any middle aged schlumpf.



Remember, probabilities apply to populations, not individuals. Nobody knows what will happen to you, and anyone who says otherwise is lying. Something like 1% of all cancers disappear spontaneously, and science has no answer for that. (And I say that being trained as a scientist - MIT graduate and all that.)



Wisecrack: "Statistically, the average person has one ovary." Absolutely accurate - but it tells you nothing about any individual.



Second, I know first hand that the only useful approach is to find out what's so, find out what your options are, and ask "What's next?" Anxiety is understandable but it's useless. You can unlearn it: it helps nothing, consumes your energy and psyche, and actually weakens your immune system. You may want to get some advice or coaching or therapy or whatever in things like mindfulness, relaxation, or even one of Bernie Siegel's Exceptional Cancer Patient retreats. My family was going to send me there but I went into treatment first and got better. If I were in your shoes today, I'd do it in an instant.



Two books I like: There's No Place Like Hope and Anticancer: A New Way of Life by an MD who twice beat an unbeatable cancer (brain cancer!), despite his own oncologists telling him it wasn't likely. You wanna be like him?? Sounds good.



Honestly I'm not sure your doctor did you a favor by emphasizing the negative. He may feel an obligation to tell you the odds (some docs are trained that way), but did he also spell out everything you can possibly do to improve those odds? THAT's what deserves your attention. You're already well aware that you might die - okay, so now what are the ways you can reduce that chance?



I'm dead serious about that. Been there, and that's the approach I took.



For instance, what have you been doing to make yourself laugh? Laughter's been proven to be good for the immune system. I had my family send me the whole first season of Saturday Night Live on DVD, and every Bugs Bunny cartoon ever recorded. What makes YOU giggle yourself silly? Are you doing it? (Even if you're dying you can have fun in the process!)



And just to be clear - if you die you won't "disappoint" anyone. Do NOT get into a head game of feeling guilty about having cancer! For heaven's sake. I think you need to get in touch with what YOU CARE ABOUT: say "I will never give up, because I care too much about all of you to say goodbye before I absolutely have to!" THAT is a reason to survive - not to "avoid being a disappointment.

"

You need to get in touch with why you WANT to be alive, and then do something about it. Even if the odds are bad, like mine were.



You might not survive. So get it in gear, if you want to.



I look forward to hearing YOU talk like this to someone a couple of years from now. :)


DAVE deBRONKART, known online as “e-Patient Dave,” is the leading spokesperson for the e-Patient movement–Empowered, Engaged, Equipped, Enabled. A high-tech executive and online community leader for many years, he was diagnosed in 2007 with Stage IV kidney cancer, with median survival 24 weeks. He used the internet every way possible to partner with his care team; today he is well. His first book on healthcare is Laugh, Sing and Eat Like a Pig.

For more information about Dave, you can find him on Twitter at @epatientDave, Facebook, his blog and at http://www.epatientdave.com.