Music inspires, soothes, invigorates and can just get under your skin in ways indescribable.  You can spend a lot of time getting treatment, so we set out to build the WhatNext Ultimate Chemo Playlist! We’ve received so many responses, we’ll be  sharing your answers in an ongoing series. Rock on!

Share your favorite tunes for getting you through treatment, or cancer in general by commenting below, and they'll make it on to one of our future playlists.

WhatNext Ultimate Chemo Playlist…Volume 1

1. On a Good Day, Ocean Lab (check out video below)
2. Breathe, Telepopmusik
3. When the Sun Comes Down, R.I.O.
4. Toes in the Water, Zac Brown Band
5. Courageous, Casting Crowns
6. Beautiful, Mercy Me
7. Amazing Grace, Chris Tomlin
8. I Will Trust You, Steven Curtis Chapman
9. Stronger, Kelly Clarkson
10. Rain, Jan Hammer

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.

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.

You can share your story and get instantly connected to other cancer fighters who share your specific diagnosis at WhatNext.com.

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.

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.

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!***

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.

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!

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. 

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.

Editor's Note: When 18-year-old medulloblastoma fighter and WhatNext-er shhwee told us how much she loved John Green's novel, The Fault in Our Stars, we asked her to share why it was so meaningful to her:

By: shhwee

The Fault in Our Stars is a solo novel written by John Green. Narrated by 16-year-old cancer patient Hazel Grace, a thyroid cancer patient. She is forced by her parents to attend a bleak support group after being diagnosed with clinical depression. She meets 17-year-old Augustus Waters, an amputee there, who she eventually falls in love with.

This book means so much to me because it perfectly depicts the mind of a teenage girl dealing with a terminal diagnosis. Everyone should read this novel. It brings insight to healthy people, and gives them a healthy dose of reality. It shows cancer patients that your friends and family aren’t as weak minded as we think, and handle more than we realize. Most importantly it shows all of us that while cancer patients are sick, we still feel sadness, joy, love, and heartache.

 

Get your canvases, paintbrushes and cameras ready! The 2012 Lilly Oncology On Canvas: Expressions of a Cancer Journey Art Competition and Exhibition is underway.

The biennial competition, organized by Lilly Oncology and the National Coalition for Cancer Survivorship (NCCS), invites individuals from the United States and Puerto Rico, who were diagnosed with any type of cancer — as well as their families, friends, caregivers and healthcare providers — to express, through art and narrative, the life-affirming changes that give their cancer journeys meaning. Entries must be postmarked by June 29, 2012. 

Oncology On Canvas(SM) was launched in 2004 by Lilly Oncology to help those affected by cancer cope with the emotional side of the disease. Winners’ prizes consist of donations made to the cancer charities of their choice. Following the competition, much of the artwork embarks on a tour of cancer centers, hospitals and patient advocacy group events.

Since its inception, Lilly Oncology On Canvas has received more than 3,600 entries. However, these 3,600 stories are but a few of the many waiting to be told by the nearly 12 million cancer survivors alive today in the U.S. alone — in addition to millions of others who love and care for them, according to Newt Crenshaw, vice president, Lilly Oncology.

“If you or someone you care for has heard the three words, “You have cancer,” then you know firsthand that a cancer diagnosis can change the lives of patients and everyone around them,” said Crenshaw. “Lilly Oncology On Canvas has become an important way for cancer patients, oncologists, oncology nurses and so many others to share their stories of hope and despair, loss and survival, and countless other emotions.” 

“We are whole people, comprised of biological, spiritual, emotional and psychological parts,” said Richard Payne, M.D., NCCS Chair, and an internationally known expert in the areas of pain relief, care for those near death, oncology and neurology. “Oncology On Canvas recognizes this fact by providing anyone affected by cancer with a platform to express often unspoken emotions, resulting in artwork that moves and inspires.” 

Here’s the scoop on how to partipate:

The 2012 Lilly Oncology On Canvas competition is open to residents of the United States and Puerto Rico. There are three entrant categories: person diagnosed with cancer; family member, friend or caregiver; and healthcare professional. Original artwork that depicts one’s cancer journey may be submitted in one of six media: watercolor, oil, pastel, photography, acrylic or mixed media. The artwork must be accompanied by a narrative.  

Winners in 24 categories will be chosen by an independent panel of judges. Prizes consist of donations to cancer-related charities selected by the winners, ranging from $1,000 to $10,000. Following the competition, much of the artwork will embark on a tour of cancer centers, hospitals and patient advocacy group events.  

For further information about Lilly Oncology On Canvas, including official rules, entry forms and a gallery of previous entries that will inspire you, visit www.LillyOncologyOnCanvas.com. You may also call 1-866-991-LOOC (5662) or e-mail artdirector@mylooc.com.

You can follow Lilly Oncology On Canvas on Twitter (twitter.com/LlyOncOnCanvas), Facebook (www.facebook.com/LillyOncologyOnCanvas) and YouTube (www.youtube.com/LlyOncOnCanvas). To learn more about cancer survivorship tools and resources, visit the National Coalition for Cancer Survivorship (NCCS) website at www.canceradvocacy.org.

By Robyn Stoller, WhatNext-er, and blogger for CancerHawk.

Chemobrain (n):  a term used by cancer survivors to describe the change in memory, concentration, attention span or ability to perform different mental tasks following chemotherapy treatments.  Also called chemofog.

Chemobrain is real and affects different patients differently. Some patients do not experience any sort of forgetfulness or inability to concentrate, while others find the effects life altering.  Whether chemobrain is temporary or permanent for an individual, these mental changes caused by cancer treatments can make it difficult for one to function normally in their daily activities.

Coping with symptoms of chemobrain involves finding ways to help you remember things better, and doing activities that keep your memory sharp.  Check out these tips for combating chemobrain from CancerCare.  (BTW, CancerCare provides FREE, professional support services to anyone touched by cancer such as support groups, workshops & financial assistance- check them out… they are fantastic!).

Make lists. Carry a pad with you and write down the things you need to do. For example, keep lists of things to buy, errands to run, phone calls to return, and even the times you need to take your medicines. Cross items off as you finish them.

Use a portable planner or personal organizer. These can help you stay on top of day-to-day tasks and keep track of appointments and special days like birthdays and anniversaries. Paper and electronic versions are available.

Get a wall calendar. For some people, this works better than a portable planner because you can hang it up in a place that is easy for you to see every day. Put it on your refrigerator or even on your bathroom mirror so you’ll be sure to look at it several times a day.

Keep a notebook. For many people, a simple, ruled notebook works just as well as a planner. Use one to record everything you need to remember, such as:

• to-do lists
• the dates, times and addresses for appointments
• your medication schedule
• important telephone numbers
• the names of people you meet and a brief description of who they are.

You can also use your “memory notebook” as a journal to track chemobrain symptoms or other side effects, or to write down questions to ask your doctor at your next appointment.

Leave a message on your answering machine to remind yourself of something important. When you listen to the message later, write down the information so you don’t forget it.

Organize your environment. Keep things in familiar places so you’ll remember where you put them.

Avoid distractions. Work, read, and do your thinking in an uncluttered, peaceful environment. This can help you stay focused for longer periods of time.

Have conversations in quiet places. This minimizes distractions and lets you concentrate better on what the other person is saying.

Repeat information aloud after someone gives it to you, and write down the important points. For example, before you write down an appointment, you might say, “Okay, so we’re meeting at 2:00 p.m., Monday, June 3rd, at 503 Main Street.”

Keep your mind active. Do crossword puzzles and word games, or go to a lecture on a subject that interests you.

Proofread. Double-check the things you write to make sure you’ve used the right words and spelling.

Train yourself to focus. We often do one thing while thinking about another, which increases our chances of forgetting something important. For example, if you keep misplacing your keys, take extra time to think about or picture what you’re doing every time you put them down. Also, say aloud to yourself, “I’m putting my keys on my dresser.” Then look at them again, and repeat: “The keys are on my dresser.” Auditory (hearing) cues give your memory an extra boost.

Exercise, eat well and get plenty of rest and sleep. Research shows that these things help keep your memory working at its best.

Tell your loved ones what you’re going through. Depending on how private a person you are, you might tell your family and friends, so that they’ll understand if you forget things you normally wouldn’t forget. They may be able to help and encourage you.

Speak with an oncology social worker. If living with symptoms of chemobrain makes you anxious or sad, seek help. Oncology social workers, such as those at CancerCare, can work with you to help you find ways to cope.

(source:  CancerCare) 

Founder of CancerHawk.com, Robyn Stoller is a Patient Advocate and Champion.  Just last year she lost her 47-year-old husband Alan to cancer, but has put their journey to work for others.  At each crossroad—from finding the best doctors with the right mentality to accessing obscure (and amazing!) resources—Robyn's gift for research, networking and tireless advocacy and a lot of luck led to just the right places.  Now, Robyn’s mission is to help patients and caregivers touched by cancer find the information they need to make informed choices.  To get straightforward answers to the questions you haven't yet asked with a dose of humility and humor, visit www.CancerHawk.com…the REAL deal for cancer patients & their caregivers. You can also connect with Robyn on Twitter @cancerHAWK.

Today’s guest post is from WhatNext-er Heidi Floyd, breast cancer survivor and the Vera Bradley Foundation for Breast Cancer's Ambassador. Her job is, simply put, to spread awareness across the nation about the Foundation and its commitment to the research it funds. 

By Heidi Floyd

48-year cancer survivor. Forty-Eight Year Cancer Survivor. (That deserves to be capitalized, I think, don't you?) I met her while speaking at an event for a Athens/Limestone Hospital in Alabama. They are driven to provide great health care to everyone who needs it in their community. Nobel mission, indeed. My friend pictured above wanted to make sure she had just a moment of my time before I left.

She is in her 90's and her survivor age is the most impressive I've ever heard. 48, come on. When I asked what I could do for her, what did she want to tell me? Her statement took my breath away.  

"You," she said, "have something very important to do. You have to tell your story as often as to as many people you can. Don't ever stop."  

I told her I would certainly try my best, and gave her a big hug. Just as I was leaving she whispered in my ear:

"You have a big job. But you have a great deal of time to do it in - after all, you've got the whole rest of your life."

So now I'm off, doing my job. For the rest of my life.  xoxo

Editor's Note: Hear Heidi's story, in her own words:

To read more about Heidi, you can find her on Twitter at @FollowHeidi, read her blog, or check in with her on WhatNext.

As a patient advocate for the American Cancer Society, WhatNext-er Staci1219 is amost always among the first to welcome a “newbie,” lend some support or offer to research just about anything for someone in need. She started on this journey when her mom was dealing with breast cancer, and it has led her to a life of volunteerisim. For these reasons, Staci is our Journey of the Week. Click here to see Staci’s journey.

What has surprised you the most about your cancer journey?

What surprises me the most about my cancer journey is when people call me their guardian angel, i don't see myself like that....I just see myself as just a person who helps someone in a hard spot in their life at the time and give them some encouraging words.

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

Knowing that I have helped someone with the same experience and letting them know mom's story and how far she's come feels good.

What are your hobbies and/or interests?

I like to do crafts, read, work on family history stuff when it doesn't drive me crazy (LOL!) and be involved with the kids’ school activities.

You have been very active with the American Cancer Society? How has this enhanced your role as a caregiver?

Yes, I have been involved with the ACS since 2003 when mom was diagnosed. Over that period of time I have learned to do more research on cancer issues because she was diagnosed with breast cancer and then AML a year later. In order to help more people I started researching more types of cancer so I could help more people.

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

I don't have just have one guilty pleasure song, I love to sing.  As a young child growing up me and my grandmother would sing in church every Sunday and I continue to have a love for music.

WhatNext-er and caregiver Rob Harris, from RobCares.com, continues to provide more wisdom in his ongoing guest blog series for caregivers. Rob shares his belief that the caregiver is "on-call" 24-7. Here's why:

Hospitals operate around the clock.

The good news is that your patient is being treated without a break in service.

What’s the bad news?

Doctors and nurses are scheduled to work in shifts. It may be 12 hours or more, but eventually the shift ends and they get to go home and sleep. The caregiver; however, is typically with the patient around the clock (if they spend day and night in the hospital room with the patient, as I did).

Here is what you likely will face:

• Every 4 hours, vital signs are taken.
• Blood work is typically drawn between 2:00 a.m. – 2:30 a.m.

If you are in a teaching hospital, as my wife and I were at the Moffitt Cancer Center, the resident assigned to your patient arrives between 5:00 a.m. and 6:00 a.m. to obtain an update as to how the patient is feeling. I always find this amusing. In most cases, the patient has no idea how they are feeling. They were (finally) sleeping.

On a typical day at Moffitt, the medical residents all march in with the attending physician (doctor assigned to make rounds) anywhere from 7:00 a.m.  to 10:00 a.m. More often than not, they are all trying to squeeze into a phone booth-sized room at the same time breakfast is delivered. (History question: when's the last time you actually SAW a phone booth, anyway?).

The trays are then picked up, lunch and dinner are also served.

In between, visits from specialists, surgeons, social workers, nurses, the nurse supervisor and any number of others will occur.

Oh, I forgot…if your loved one happens to be on an intravenous drip, such as saline solution, chemotherapy, or both, each time a bag empties, a rather loud alarm sounds. Additionally, if the bag stops dripping for any reason, another alarm rattles the room. I’m not sure why, but this seems to happen most frequently between the hours of midnight and 6:00 a.m.!

What's the caregiver's role in all of this? Everything imaginable!

Let’s start with the doctors’ visits. While the patient is the one communicating, keep in mind they are either sleeping or on medication and more often than not, they may not be fully alert. Though you likely are on little, if-any, unbroken sleep and are just as tired, you may have to speak for the patient.

How can you possibly do that? How do you know how the patient is doing?

The answer is: When the patient is awake, you need to be awake and alert. Though it may be 2:00 a.m. and the tech is having a conversation with your care recipient, it is not recommended that you turn over and try to sleep through it. You need to know how the patient is doing at all times. If new symptoms have developed or an unfavorable reaction to a specific medication is arising, you need to record this to report it to the doctor the next morning should others fail to do so. They may forget. You, on the other hand, cannot and should not ever do so.

Therefore, you are on-call 24-hours a day.

Since we always welcomed people into our room, we wanted to ensure they felt comfortable and would sit rather than stand. If they sat, they stayed longer. Any additional attention that someone was willing to pay to my wife (and me) was valuable. I never wanted to detract from that opportunity.

One of your critical duties is record-keeping. It is so important to capture everything, no matter how minor it might be onto a spreadsheet. This is vital in the event doctors need information that, for whatever reason, is not provided by the hospital.

As a caregiver, you may never know if, or what you are doing will be useful. Conversely, you may learn it is incredibly important. Your efforts to be overly prepared and informed can have a very positive impact on the treatment of your loved one. Even though substantial effort may be required, it is all worth it!

Hearing about a Stage IV lung cancer fighter whose cancer is shrinking is empowering for the patient, her loved ones and other lung cancer fighters, too. 58-year-old WhatNext-er collinsb01 gets that it's so important to share her journey, and has done so with such detail that others can see how her journey has progressed from the time of diagonis to present day. 

WN: What has surprised you the most about your cancer journey?

There are a few things that have surprised me about my cancer journey. First is how I have felt at peace throughout most of it. I don't know if this is because I traveled along with my mother through an 11 year journey with colon cancer or if it is because my diagnosis of lung cancer was given to me by God one day before being told by my doctors. As strange as this may sound to many people, it was communicated to me by God as plain as speaking to any person. I believe this was to let me know that He is with me throughout this time.

While I wasn't the main caregiver for Mom, I spent a bit of time with her. But I now know it wasn't enough. I keep saying to myself, "If only I had known what my Mom was going through." I have come to realize that you will never "know" what a cancer patient is going through until you travel that road. Another thing that has surprised me is the "lonely" factor. All I can say is this is a lonely road. I would not wish this on anyone.

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

When you can see that others are going through and feeling the same way that you do, it helps you not feel alone. It also seems to be good medicine for me to be able to share my feelings and knowledge with others especially the "newbies." I remember when this all started, the biggest problem for me was getting information. Had I come to this site [WhatNext.com] from the beginning, I would have been so much better off. Now I tell people about it every chance I get.

WN: What are your hobbies and/or interests?

I love to sing. Prior to getting 'sick', I was music director for my church's youth choir and one of the adult choirs. I now only work with one of them. I love to read and work sudoku and crossword puzzles. I own a home based Christian bookstore that is more a of ministry and mission than an income producer. I hope to soon be working with the teen mentoring program with the local Safe Schools Healthy Students program.

WN: Favorite guilty pleasure song – the one you like to sing more than any other?

I have no one favorite guilty pleasure song. I love to sing! I will just come out with anything. Aretha Franklin's Ain't No Way or Natural Woman may be closest to the top.

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

Over the last two decades many exotic fruit juices have been promoted as alternative cancer treatments. Noni is among the most popular products being touted as a cancer cure, but is there any evidence to support that claim?

What is noni?

Noni is the fruit of Morinda citrifolia, an evergreen plant that is native to Southeast Asia and Pacific Islands. It has been traditionally used for infections, diarrhea, skin conditions, and as a tonic. The fresh juice and its extracts are available as dietary supplements and are marketed for immunostimulation, chronic fatigue syndrome, hypertension, and as a cancer treatment.  Noni products are rich in potassium and antioxidants, such as vitamin C.

Research

Laboratory and animal studies suggest that noni fruit juice and its root extracts have anticancer effects. However, no studies have been conducted to verify noni's benefits for the treatment of cancer in humans.

The National Center for Complementary and Alternative Medicine (NCCAM) sponsored an early phase study using freeze-dried noni fruit extract to determine the optimal dosage and safety for use in cancer patients. The findings are yet to be published.

Manufacturers promote noni in many forms including capsules, fermented or unfermented juice, and pasteurized or unpasteurized drinks. However, there is no clear evidence that any one is better than the others.

Side Effects

Noni juice is generally safe when consumed in moderation, but some harmful effects have been reported: It may cause liver toxicity and accumulation of potassium in the body, as well as interact with prescription drugs, including some chemo drugs, by making them less effective. People are encouraged to consult with a physician before taking noni in any form.

More about Noni

Memorial Sloan-Kettering Cancer Center’s Integrative Medicine Service developed and maintains  “About Herbs,” a free, comprehensive resource that provides objective and evidence-based information about herbs, botanicals, vitamins, dietary supplements, and unproven cancer therapies.   For more on noni, go to http://www.mskcc.org/cancer-care/herb/noni. 

by April Galarza, copywriter for GiveForward.com

Cancer takes a heavy toll on our health, our emotions, and our wallets. If someone you know is battling cancer, you may wonder what you can do to help.  GiveForward believes that if family and friends come together, they can build a network of support where the community can offer encouraging messages that bolster strength and morale while helping raise money for out-of-pocket costs.

The American Cancer Society estimates that the 2010 total cost of cancer in the U.S. rose to $263.8 billion, but it is the individual impact that is most threatening to the people we love. Even with insurance, average out-of-pocket expenses amount to somewhere upwards of $712 per month—recent reports from the Duke University Medical Center estimate the amount is closer to $1,266 per month.

• Out-of-pocket Expenses for Cancer Patients:
• Deductibles and co-pays for doctors visits and prescriptions
• Travel to and from treatment
• Treatments not fully covered under your insurance
• Supplementary and alternative treatments that may not be covered at all
• Loss of income due to extended time off of work.
• Rent, mortgage, groceries,other bills not related to medical expenses
• Lifestyle adjustments: nutritional counseling, healthy foods, etc.
• Other indirect and possibly unanticipated costs such as loss of income of family members caring for a cancer patient.

"One in five people with cancer use up all or most of their savings, and those are people who have insurance, " says Christy Schmidt, a cancer survivor  and an author of the a joint report from the Kaiser Family Foundation and the American Cancer Society outlining  the serious financial consequences of cancer.

Another study from the Fred Hutchinson Cancer Research Center revealed that people diagnosed with cancer were twice as likely to file for bankruptcy. Of the bankruptcies caused by a cancer, a surprising 78% reported having some form of health insurance, de-bunking the myth that medical bills only really affect the uninsured. 

Medical bills can quickly wipe out retirement accounts, college savings funds, and home equity. Once a patient’s savings has been exhausted bankruptcy may be their only refuge. Eliminating the financial barriers a cancer patient faces can often be vital to their survival. 

The terrifying fact that 62% of all bankruptcies are caused by medical expenses is a call to action to us at GiveForward. This is why our goal has always been to empower the community to come together and help alleviate the financial burden due to medical bills. GiveFoward provides free fundraising pages for family and friends enabling them to offer emotional and financial support to loved ones in need.

Fundraising pages on GiveForward like this one for Harsith, a 14 year old boy with Leukemia, can give families new hope. His family and friends are raising money to pay for a bone marrow transplant.  The community has rallied and raised $42,187 so far. 

Then there is the amazing story of Kristen, an Ironman triathlete who has ran, cycled and swam her way to raising over $100,000 for the American Cancer Society.  Now this cancer fighter is getting support of her own as she battles cancer.  They have raised over $14,000 on GiveForward and donations and notes of love and support known on GiveForward as “hugs” are pouring in.  

"What an inspiration you are to people of all ages. Hope you feel all the love that people have for YOU! Thank you for all the good you so generously and courageously do for others."  - Hug from the Lucado Family

Battling cancer is a challenging, scary and debilitating experience.  It is easy for family and friends (as well as the patient!) to feel alone and helpless in the face of such a terrible disease. There is no need to despair. Instead,  you can join together with family and friends to create a network of love and support from your community and combat  the costs of cancer treatments and the risk of bankruptcy as a united force.  Start a GiveForward page for a friend or family member in need or consider donating to one of the many fundraisers on our site today.

Finding someone who has shared your cancer diagnosis – and survived – can make a huge impact. An incredible organization that provides 1-on-1 direct support among cancer fighters, survivors and caregivers is Imerman Angels. Imerman Angels was founded in 2003 by Jonny Imerman, who at 26 years old was diagnosed with testicular cancer.

WhatNext caught up with Jonny (click here to see his WhatNext profile) to learn more about his purpose, his organization and how cancer fighters, survivors and caregivers can benefit from Imerman Angels.

WN: Jonny, tell us how you came up with the concept for Imerman Angels?

JI: I was lucky enough to have loving support from family and friends. But I had never met anyone my age who was a cancer survivor. I wanted to talk to someone who truly understood, and was intimately familiar with this experience. What I really wanted was someone who had already beaten the same type of cancer. 

WN: So tell us how Imerman Angels works.

JI: Through our unique matching process, Imerman Angels partners individuals seeking cancer support with a “Mentor Angel.” These 1–on–1 relationships inspire hope and offer the chance to ask personal questions and receive support from someone who is uniquely familiar with the experience. Mentor Angels can lend support and empathy while helping cancer fighters and caregivers navigate the system, determine their options and create their own support systems.

The service is absolutely free and helps anyone touched by any type of cancer, at any cancer stage, at any age, living anywhere in the world.

WN: How do people sign up to either get or give support?

JI:  It’s easy. If you're a cancer fighter, survivor, or caregiver – you can call us toll-free at 1-877-274-5529 or click here to join our database. We match everyone within one business day.  Matches can connect via phone, email, snail mail or in person. Donated prepaid phone cards are available to each match. To ensure the highest quality of personal service one of our Connection Specialists is personally involved with every single match.

WN: Can you give us an example of a match your organization recently made?

JI: Absolutely! Recently, we were able to connect a 16-year-old Germinoma (brain cancer) fighter to a 19-year-old Germinoma survivor! Not only were we able to connect the Support Seeker to a Mentor Angel, but his caregiver mother was also connected to another caregiver mom whose son survived the same cancer. That’s two less people who have to fight cancer alone!

Another great match example is a man from Nicaragua who is currently fighting testicular cancer. Our team connected him to a man of Chilean decent from Chicago who survived the same type of cancer. Both men are in their 30’s and are well on their way to discussing the complications with the cancer. We can't wait to hear back from both of them!

WN: What happens if there is no match?

JI: We have the world's largest database of cancer survivors dedicated to providing 1-on-1 cancer support. Occasionally an exact match can't be found internally. In those instances, we reach out to our network of cancer partner organizations to find a match.

WN: How do people know if their conversations and email exchanges with Mentor Angels are confidential?

JI: All potential Mentor Angels are personally screened over the phone by one of our Connection Specialists (An IA staff member who makes the match!). Each screening conversation is thorough and personal and the process is intended to provide the flexibility to accept potential Mentor Angels on a case-by-case basis from a variety of backgrounds and experiences.

Mentor Angels are intended to nurture a supportive, encouraging and friendly mentorship with a cancer fighter or caregiver without ever dispensing medical advice. All Mentor Angels are required to read training materials when they register online. Prior to being assigned as a Mentor Angel, they are required to read the materials and go through a phone training program with an Imerman Angels Connection Specialist. They are then sent additional training materials to help support these efforts.

To find out more information about Jonny Imerman or Imerman Angels, visit ImermanAngels.org.