Out of the O.R., Ready for Recovery

Even a simple procedure requires preparation for a successful recover. Don’t go it alone, and don’t fail to plan ahead.

You’ve made the scary decision to move forward with an invasive medical procedure. Your date is set and your doctor has explained the pros and cons. While you might think all that’s left to do it show up with someone to drive you home, your best chances of a complete recovery begin now with preparation for after the surgery.

Ask For Help

This cannot be underscored enough. Even if you’ve only having a simple outpatient treatment, always have a responsible adult on-hand for the first day or two post-op. The University Of Rochester Medical Center lists nausea, gastrointestinal discomfort, and pain surrounding the incision as common discomforts after any surgery. Coupled with grogginess, these issues can make it difficult to perform even minor tasks, such as dressing the wound, caring for children and pets, and taking medication on time.

Easy on the Activities

If you’ve undergone a major surgery, you’re best bet is to stay as still as possible for a few days to allow your body time to begin the healing process. Prior to “going under the knife,” prep an area of your home where you can convalesce in peace and quiet. MedlinePlus recommends setting up shop on the first floor, placing regularly-needed items within reach, and keeping a phone in your recovery zone.

Diet Does It

The food you put into your body now and after the procedure plays a major role in your recovery. In the days and weeks before the operation, eat plenty of healthy foods, including lean meat, fruits, vegetables, and fish. Keep pre-portioned plates of these foods in the fridge or freezer to heat up easily when you’re on your own. Click here for a few tips on how to make your own “TV dinners” with fresh ingredients. Not only are these DIY dinners convenient, but will help you fuel your recovery from the inside out.

Add a Day Away

Take at least one extra day off work to allow extra time to account for complications. Even if you feel back to normal shortly after treatment, your body is working overtime regenerating tissue, routing white blood cells to the injured area, and filtering out toxins from the immune system.

Special Considerations

Certain medical procedures require more pre- and post-op preparations than others. Gastric sleeve (bariatric) surgery and dental implants are two of these.

Bariatric recovery

Bariatric surgery is a last-resort for people suffering with extreme obesity, especially when accompanied with diabetes, heart disease, and other related conditions. The effects of weight loss surgery are long-lasting; you won’t “go back to normal” afterwards. You’ll need to adjust your dietary habits long-term or risk returning to the same unhealthy weight. Your new lifestyle should start well before the surgery by slowly replacing bad eating and exercise habits with good ones. Additionally, after the surgery and despite being a minimally invasive procedure, your pain level may be high for several days as your body adjusts to its altered state, liquid diet, and lack of calories.

Dental implant recovery

Dental implant surgery is not one procedure but a series of events that must take place in a specific order before the final implant can be placed. The Mayo Clinic reports that the process can take several months and may require bone grafting if your jaw bone isn’t healthy enough to support the new tooth. Dental implants, when complete, may last up to 25 years and require proper hygiene exactly like your natural teeth. It is important to maintain a relationship with your dentist and make regular visits for cleaning and implant inspection.

The pain and discomfort of surgery ushers in a new era of your health. However, you must take precautions before and after in order to reap the benefits of medical intervention. Make sure you have help and talk to your doctor about ways to stay healthy once the scars have healed.

Image via Pixabay

Uber Health App

The Community Transportation Association estimates that approximately 3.6 million Americans miss or delay medical care because of transportation issues that cost the health care system $150 billion each year.

To help combat this issue, Uber has created a new app called Uber Health. Earlier this month Uber announced that they are working with providers to offer reliable rides for patients, care partners, and families to get to and from doctor’s appointments and the hospital.

The app will allow medical and administrative staff to either call an Uber to drive a specific patient home, or to dispatch an Uber to the patient’s house for pick up. The app also allows users to schedule the ride up to 30 days in advance, so important appointments are never missed. Planning transportation in advance enables patients to schedule rides to and from follow-up appointments even while they are still in the healthcare facility. With the ability to schedule and manage multiple rides from a single dashboard, healthcare professionals can take their level of care to the next level with Uber Health.

How It Works

Uber Health saves patients time and money, as they can focus their attention on their health instead of worrying about how they might get to their next appointment. With the help of Uber’s cost-saving methodology, patients and healthcare professionals can save money utilizing the app over hailing taxis or paying for expensive hospital parking.

Uber Health enables older patients and those with chronic pain gain independence and mobility. Because all communication with Uber Health is completed via text message, patients no longer need a smartphone and the corresponding Uber app to access Uber Health’s benefits.

The Uber Health dashboard was designed with HIPAA standards in mind, ensuring that all aspects of the service meet health care privacy and security standards.

As a part of Uber’s beta program, over 100 healthcare organizations in the U.S, including hospitals, clinics, rehab centers, senior care facilities, home care centers, and physical therapy centers are already using Uber Health.



For more information, please visit the Uber Health site: https://www.uberhealth.com

Fight Financial Stress for Better Health

Receiving a diagnosis of cancer is immensely challenging; it can provoke a blend of anxiety, sadness, and fear, much of which can be allayed as we commence our treatment plan, working alongside a team of health professionals we trust. Sometimes, we can feel anxious or depressed while receiving treatment; we can feel tired and can grow impatient with the wait, eagerly wishing to simply get back to our day-to-day lives. The stress we feel can be compounded if we are also struggling financially. This post discusses the relationship between finances and health, suggesting ways to nip the problem in the bud.

Financial Stress and Mental Health

Studies on financial stress among particular groups (for instance, students burdened by debt) have found a greater risk of mental illness. Debt, low wages, or bankruptcy take their toll on our energy levels, but also affect our motivation, sleep, and lifestyle choices. Indeed, the relationship between stress and our finances is cyclical; the more burdened we feel, the more likely we are to make poor financial decisions (including spending money impulsively and getting deeper into debt). The more in debt we are, meanwhile, the more anxious or depressed we can feel. These states affect our ability to think clearly and formulate a strategic plan to rescue our finances.

Stress and Physical Health

Because our mental and physical health are interrelated, when we are in constant ‘fight or flight’ mode, we can make lifestyle decisions which hamper our physical health. For instance, binge eating and other eating disorders can be trigger by stress. Overeating, meanwhile, or indulging in processed and sugary foods, can lead to obesity, insulin resistance, and even Type 2 diabetes.

Seeking Financial Advice

If you are battling cancer and struggling to meet work and health needs simultaneously, do not be reticent to ask for help. Ask friends or family about a trusted accountant or financial assessor who can give you handy advice on how to save, consolidate, or refinance existing debt.

Accountants can point you in the right direction by suggesting that you automate savings. They can help you figure out which debts to pay first, and formulate a retirement plan. They can also advise you on small ways to save that can add up, such as the use of cashback cards, which can return you up to 2% of everything you purchase. This is not for everyone; there are options which can consolidate and reduce costs, but also others to help raise short term funds. Financial apps, meanwhile, can make it much easier to save money every month. Small steps such as this can make a big difference; they can mean having enough to pay someone to help you with housework or to have an occasional massage and other soothing treatments.

Stress Busting Strategies

Because the relationship between finances and our mental health is so interdependent, it is important to battle stress actively. Yoga and meditation are two activities which have been found to lower levels of stress hormone, cortisol, in numerous large-scale studies. In the end, stress reduction is a very personal pursuit; for some, experiences in Nature are a great source of relief. For others, hobbies such as art, music, or even gardening, do the trick. The key is to find something that resonates with you; the more mindful the activity, the better.

It is vital for patients, family, and friends to be aware of the effects stress can have on their physical and mental health; this is the first step towards putting an end to the stress-anxiety conundrum. By putting your finances in order and taking active steps to quell stress, you will find that neither has such a powerful hold on you as it may initially seem.

About the Author: Chrissy Fielding is a Content Manager and is working to build one of the best senior resource sites.

Grief, Loss, and the Cancer Experience

“In a society which is much more inclined to help you hide your pain rather than to grow through it, is necessary to make a very conscious effort to mourn.” -Henri Nouwen

Grief is a natural response to loss. While many people think of grief only as a reaction to bereavement, we can feel grief after any kind of loss. When we step back and look at the cancer experience we see that grief and loss are a fundamental part it.  Some of our losses are tangible, for example losing our hair, and some are more intangible, such as the loss of trust in our bodies.

Coping with the losses associated with cancer is challenging.  Grief brings many emotions with it. Patients as well as caregivers and family members may go through emotions of anger, denial, and sadness.  While there is no right or wrong way to grieve, there are healthy ways to cope with the pain and sadness that, in time, can help you come to terms with your loss, find new meaning, and move on with your life. 

10 Ways to Cope With Cancer Grief

1. Acknowledge Your Feelings

Attempts at avoiding or ignoring difficult feelings hinder the healing process. Nancy Stordahl, who writes about living with breast cancer on her blog, Nancy’s Point, says we need to “grieve for things we’ve lost to cancer. We aren’t the same people in some ways post diagnosis. We have lost parts of ourselves (figuratively and literally). We need to grieve for people, things and pieces of ourselves we have lost. Too many times we aren’t given the time or ‘permission’ to do so.” By facing our losses and feeling the pain we allow grief to take its natural course and can emerge the other side with greater self-awareness and acceptance.

2. Tune Into What You Are Feeling

It is helpful to get into the habit of checking in with your feelings.  Take a moment to stop and be still. Breathe deeply. Now ask yourself what you are truly feeling. Grief? Guilt? Sadness? Anger? Whatever arises, see if you can just be with the feeling and feel it fully without judging your thoughts or emotions. Is there a physical discomfort associated with this feeling? For example, when you’re anxious or afraid, you may notice a tightness in your chest. Can you soften and relax those areas of tension in your body?  You may find the intensity of your feeling lessens as you do this exercise. If the emotion deepens or adds to your distress, discontinue the exercise and try again later.

3. Write Down Your Feelings

If you feel stuck when sitting with your emotions, try journaling about the experience. For some people, it’s easier to write thoughts and feelings down on paper than to say them out loud.   Keeping a journal to write down your thoughts is a way to come to terms with your feelings of grief. Many cancer patients choose to write about their feelings in a blog. Blogging in a community of other patients who understand what you are going through can be very therapeutic (to learn more about starting a blog read this earlier post).

4. Take Care of Your Physical Health

Grief is as much a physical as an emotional process – (we often refer to grieving as ‘grief work’) – so it’s important that we get a good night’s sleep, take some exercise and eat healthy meals to regain our physical strength and heal fully.

5. Pay Attention to Grief Triggers

Anniversaries of your surgery, diagnosis and other cancer-related milestones can reawaken sad memories and feelings. Plan ahead for those times.

6. Go At Your Own Pace

There is no time-table for grief, yet so often we push ourselves to ‘get over’ our grief as quickly as possible.  Adapting to and coping with cancer is a process, which neither you nor any well-meaning friends or family should rush you through.  Grieving is not something that occurs once and then you are ok.  Psychiatrist Elisabeth Kübler-Ross introduced what became known as the ‘five stages of grief’ as a way of looking at grieving process, but quite often these stages don’t follow a sequential order. In reality grief can be much more disordered. Some people start to feel better in weeks or months. For others, the grieving process is measured in years. Whatever your experience, it’s important to be patient with yourself and allow the process to unfold naturally.

7. Learn To Adjust To Your New Normal

Often we want to rush through our grief (or others want us to rush through it) so we can get back to ‘normal’ again.  The thinking behind this is when we ‘get back to normal’ we are healed. But we may find that it is no longer possible to go back to who we once were.

Your ‘new normal’ may include adapting to changes in energy and activity levels, adjusting to changed relationships at work and in your personal relationships, coming to terms with an altered body, and managing pain and treatment side effects. Be compassionate and gentle with yourself as you move through this process. Don’t judge yourself or try to hurry the experience along.

8. Take Stock

Many people see this as a time to create a new way of being in the world. Psychotherapist Karin Sieger sees in this time “opportunities of reflection, contemplation, looking at life and ourselves. And sometimes new realizations and decisions can come from that”. Ask yourself what is most important to you now? How do you want to live each day?  Hidden within grief is a healing potential that eventually can strengthen and enrich life. Rediscovering your dreams and identifying what you really want for your life can transform your loss into something new within yourself.

9. Don’t Go It Alone

Grief can feel very lonely, even when you have loved ones around. Turning to others who have experienced similar losses can help. Look to cancer support groups in your area or search online to connect with those who truly understand what you are going through.  Talking to a psycho-oncologist or counsellor can also help.

10. Recognize There Is No Right Way To Grieve

Grief is a highly individual experience. How you grieve depends on many factors, including your personality and coping style.  Commenting in her last book before her death in 2004, Kübler-Ross said about the five stages of grief: “They were never meant to help tuck messy emotions into neat packages. They are responses to loss that many people have, but there is not a typical response to loss, as there is no typical loss. Our grieving is as individual as our lives.” Don’t let anyone tell you how to feel.  Your grief is your own, and no one else can tell you when it’s time to ‘move on’ or ‘get over it’.

When Grief Doesn’t Go Away

We all cope with grief in our own way and most of us reach resolution and acceptance in time. It’s normal to feel sadness, depression and grief following a loss, but as time passes, these emotions should become less intense.  If you aren’t feeling better over time, or your grief is getting worse, it may be a sign that your grief has developed into a more serious problem, such as complicated grief or major depression.   If your grief is overwhelming or lasting for a prolonged time, seek out a mental health professional with experience in grief counselling. They can help you work through your feelings and overcome obstacles to your grieving.

Grief can be a roller coaster full of ups and downs, highs and lows.  It takes courage and time to work through your feelings of loss. Grief counsellor Taruni Tan has written that “everyone’s healing process is unique and while there may be universally recommended tools and techniques to try, we each have to discover our own individual formula.” The good news is that most of us who grieve recover with time.   We may be radically changed by the experience, but we find a way to continue to face the future.

What’s a Patient Scientist?

I recently attended a conference called “Patients As Partners” which focused on the benefits of Pharma companies using patients early during the development of clinical trials.  One company (I don’t remember which one) said that they had begun referring to patients in this role as “patient scientists”. I hadn’t heard this term before but it struck me as profound to the point where I even tweeted about it…and I don’t tweet on a regular basis.

Why did I find this term so encompassing?  First a bit of background.  I was diagnosed with a blood cancer called Multiple Myeloma and given 2-3 years to live.  That was 23 years ago but with lots of treatment…chemotherapy, 3 transplants (including one allogeneic transplant using donor stem cells), several rounds of radiation and 2 clinical trials.  During the last 15 years I’ve become quite active in myeloma: facilitating our local San Francisco Bay Area myeloma support group, volunteering with several myeloma advocacy organizations, and attending medical conferences like the annual American Society of Hematology and International Myeloma Working Group conferences.  And most recently, I’m helping provide a patient perspective during the design and approval of myeloma clinical trials for SWOG (a National Clinical Trial Network group) and the National Cancer Institute.

At these conferences and clinical trial meetings, almost all the attendees are MD’s and PhD’s and it can honestly be quite intimidating to ask questions and make suggestions. But then I heard the phrase “patient scientist”. In fact, none of those doctors in the room have the expertise that I do being a myeloma patient. None of them have been treated with chemotherapy, had a transplant, or been the “recipient” of a dozen bone marrow biopsy/aspirates. I really am an expert, or “scientist”, in being a patient, having experienced the physical and mental demands that go along with trying to survive with good quality of life.  And by sharing experiences with other patients, I’m able to offer a valuable perspective when designing future trials.  As a “patient scientist”, I take very seriously my role and the responsibilities that go along with it. And I’m always appreciative that those MD’s and PhD’s consider my input as they do each others.

Notable News: March 2018

Medicare-eligible cancer patients just got more access to genetic testing according to reuters.com. The U.S. Centers for Medicare and Medicaid Services will now pay for some genetic tests in order to help get patients the drugs most likely to benefit them. The coverage means that a patient’s test sample could be screened for all known gene mutations and potential treatments. Results can also be used to determine if a patient is eligible for clinical trials. Several in vitro diagnostic tests are covered and some future tests that gain approval by the Food and Drug Administration will be covered as well. Patients will also be covered for repeat testing of a new primary cancer diagnosis. More information about the coverage and genetic testing for medicare patients can be found here.
Vitamin D may protect against some cancers, reports sciencedaily.com. An international study conducted in Japan that followed more than 30,000 male and female participants for an average of 16 years found that higher levels of vitamin D were related to about a 20 percent reduction in cancer for both men and women. The study also showed a 30 to 50 percent reduction in liver cancer, mostly in men. The authors of the study say their findings support the theory that vitamin D protects against cancer, but they also note that more studies are needed to determine the optimum level of vitamin D to prevent cancer. You can find more details about this promising study here.
A diabetes drug may be able to stop the progression and spread of pancreatic cancer, says medicalnewstoday.com. The study, by Rutgers Cancer Institute of New Jersey, is not the first to find metformin as a possible treatment for cancer, but it is the first to pinpoint why. The drug has an effect on the signaling of what is called the REarranged during Transfection (RET) cell and by targeting it with metformin it appears to prevent the progression of pancreatic cancer. The studies on metformin and the treatment of cancer have created interest in also using metformin as a potential in preventing cancer, especially in those who are at high risk. The scientists who conducted the Rutgers study say further studies need to be done to determine exactly how metformin affects RET signaling in pancreatic cancer. Learn more here.
Researchers may have found a better way to predict the effectiveness of drugs in cancer patients, reports cnbc.com. The researchers took biopsies from colorectal cancer patients and created what they are calling microtumors. They then treated the micro tumors with drugs and observed how well they worked. The method proved much faster than the previous method of growing cancer in mice which typically takes six to eight months. The micro tumors grow in six to eight weeks. The microtumor method is also less expensive and was more effective in predicting how well drugs will treat an individual’s cancer. The microtumor option will help doctors prescribe the best drug for their patients and according to the lead doctor of the study, patients are already in trials for the new process. More information about the microtumors and how they will help patients can be found here.

Qualifying for Disability Benefits with Cancer

Have you been diagnosed with cancer? If so, you might be eligible for financial aid. If so, the Social Security Administration (SSA) might be able to help. The SSA offers monthly financial resources for people with serious illnesses who are unable to work. While a cancer diagnosis does not automatically qualify, thousands of people with cancer are eligible for assistance.

Medically Qualifying for Disability

The SSA will refer to its own medical guide, known colloquially as the Blue Book, when you apply for disability benefits with cancer. The Blue Book contains details on exactly what medical results you’ll need for cancer to qualify. Cancer has different qualifying criteria depending on your specific diagnosis, so there’s no way to know if you’ll qualify without first consulting the Blue Book. Here are a couple of examples on how to qualify:

Prostate Cancer

Prostate cancer is one of the most commonly diagnosed forms of cancer, but the good news it’s highly treatable. Because of how receptive prostate cancer is to treatment, the criteria for qualification for prostate cancer are challenging to meet.

You will qualify for disability benefits with prostate cancer if your cancer has progressed or returned despite one round of anticancer therapy (usually three months’ hormonal therapy or chemotherapy will qualify), OR

Your cancer has spread to an internal organ, OR you have small-cell prostate cancer

Prostate cancer usually has to be Stage IV to qualify, but again, if your cancer has returned despite treatment you may still qualify at a lower stage.

Esophageal Cancer

Esophageal cancer is typically aggressive and challenging to treat, so you’ll actually qualify for Social Security disability benefits with just a diagnosis. Other forms of cancer that qualify with only a diagnosis include:

  • Acute Leukemia
  • Gallbladder cancer
  • Brain Cancer (malignant, not benign tumors)
  • Inflammatory Breast Cancer
  • Liver Cancer
  • Pancreatic Cancer
  • Salivary and Sinonasal Cancers
  • Thyroid Cancer

The entire Blue Book is available online, so you can review the cancer listings with your oncologist to determine if you’ll meet a listing. Typically, if you can meet any one of the following criteria you’ll qualify:

  1. Your cancer is inoperable or untreatable
  2. Your cancer is Stage IV
  3. Your cancer returned despite treatment

Starting Your Application

Applying for benefits is a tedious process, but fortunately you can complete the entire application from the comfort of your own home. Apply online at the SSA’s website—you can even save your progress to be completed at a later date.

If you’d prefer, you can also apply in person at your closest Social Security office. There are over 1,300 offices located across the country. You can schedule an appointment to apply in person by calling the SSA toll free at 1-800-772-1213.

Once approved, you can spend your monthly benefits on medical bills and upcoming treatments, childcare, housing for your family during treatment, food or utility bills, or any other daily living expenses.

Additional Resource:

Social Security Administration: https://www.ssa.gov

Social Security Disability Evaluation: https://www.ssa.gov/disability/professionals/bluebook/

Qualifying Criteria: https://www.disability-benefits-help.org/resources/medical-evidence

The Blue Book: https://www.ssa.gov/disability/professionals/bluebook/AdultListings.htm

Social Security Disability Application: https://www.ssa.gov/applyfordisability/

Social Security Offices Locator: https://secure.ssa.gov/ICON/main.jsp

Bills Social Security Can Cover: https://www.disability-benefits-help.org/blog/bills-social-security-disability-benefits-cover

This article was provided by Disability Benefits Help (www.disability-benefits-help.org), an independent resource dedicated to helping people across the country receive the disability benefits they need. For more information, feel free to reach out to our team at help@ssd-help.org.

Patient Profile: Justin Salce

Justin Salce

Acute Myeloid Leukemia

When he was just 17 months old, Justin Salce was diagnosed with, and underwent treatment for, acute myeloid leukemia (AML). Justin is 17 years old now, and he doesn’t remember much about being sick. He says he remembers that the pizza at the hospital was good, but that’s about it. His mother, on the other hand, remembers it all very well. “He had been running a fever for close to two weeks and it would spike,” says Orlaida Salce, Justin’s mom, and even though she was told it was an ear infection, there were other symptoms, such as extreme bruising, that made Orlaida think that something more serious was going on.“People thought I was crazy,” says Orlaida who, despite all the tests coming back normal, says she just knew something was wrong. Justin was the fifth of six children and Orlaida was an experienced mom who knew what she was seeing was not normal. “She kept taking me in and they would say I was fine,” says Justin, but Orlaida didn’t give up. Finally, a test revealed the leukemia, which hadn’t shown up in the blood work because it was in the very early stages. Orlaida was told that the survival rate for AML was 25 to 30 percent, but that those statistics were based on adults because AML was rarely diagnosed in children.

When Justin started treatment he didn’t respond to the typical AML protocol and did not go into remission as expected. That’s when the doctor suggested doing a trial of a treatment program from the 1970s that was no longer being used. Orlaida says the program was very costly and not typically approved, but they were able to customize the trial for Justin. The doctor dubbed it the Justin Protocol and after an intense six months of chemotherapy that Orlaida describes as very harsh, Justin went into remission and has had no recurrence. “It wiped it out,” says Justin. “I just feel so lucky the program was made specifically for me.” While there’s been no other maintenance, Justin does require regular check ups to ensure he stays healthy. “He got a lifetime of chemo in six months,” Orlaida says, “so they monitor his heart.” That happens every three years now. “It used to be every year, but my results were stellar,” says Justin.

The first year though, Orlaida says they basically lived in the hospital. She says it was a very lonely time and the stress took a toll on her. Shortly after a party celebrating Justin’s one year of remission, Orlaida says she ended up in the hospital. They never figured out what was wrong with her but decided it must have been stress-related. She says it was after Justin was in remission for five years that she could breathe a little easier. Her experience inspired her to volunteer with various cancer organizations. “I felt that the reason my son got sick was so I could help others,” she says. “I wanted to help other parents not feel as alone as I felt.”

Justin isn’t sure if having cancer affected the way he lives or not, “I was so young, I didn’t know any different,” he says, but it did affect Orlaida. “You don’t forget for the rest of your life,” she says. “I’m very blessed to have my child.” Both Orlaida and Justin say they feel lucky. “We got a second chance and we’re going to make the best of it,” says Orlaida.

Justin is now a senior in high school; he’ll be 18 in June, and he’s the picture of health. “I’m living a good life now,” he says. He likes computers, his favorite hobby is training at the gym, and he’s very health conscious. “He knows how precious health is,” says Orlaida. And, while he is doing very well, he’s not totally out of the woods. With cancer, there is always a chance it can come back and, in Justin’s case, he could encounter issues as a result of the intense chemotherapy. He doesn’t typically like to tell people he is a cancer survivor. “I feel like they’d treat me differently,” he says, but now, on the verge of adulthood and looking at his future, he’s ready to talk about the experience. “Sharing my story could help other people,” he says. “If I tell my story it could give them hope.”

Living With Two Cancers

My story with cancer started in 2008 when I was diagnosed with Multiple Myeloma. I was fortunate to have a primary care physician who noted abnormalities in routine blood work and sent me to a hematologist oncologist. At the time of diagnosis I was at the MGUS stage, precursor to active Myeloma, and was monitored every 6 weeks. During that time I switched to a Myeloma specialist in the health system where I was employed as a PT. I also hit the internet to learn more about this cancer that I had never heard of. BIG MISTAKE! The published survival rates at the time were 2 years. I wasn’t ready to hear that so I stopped reading.

Over the next year I pretty much refused to own the fact that I had a cancer diagnosis. I wasn’t being treated, might never be treated and felt ok except for fatigue. That all came to a screeching halt one day when I had extreme pain in my left arm and suddenly couldn’t lift my arm. I went to the ER and was diagnosed with a pathological fracture of my left humerus, upper arm. I saw my specialist the next day and began treatment immediately since I now officially had active Myeloma.

I responded well to treatment and went on to have an autologous stem cell transplant (ASCT) 9 months later. This led to a complete response and almost 3 years with no treatment until I relapsed. I began treatment again with the same drugs that had worked so well before and again had a good response. I continued with this for almost 4 more years until one day in October 2016 all hell broke loose. I was in my oncologist’s office for a regular appointment waiting for him to come into the examining room when I crashed. I was rushed across the street to the ER where I was admitted. A few days later, after many tests, I was diagnosed with Acute Lymphoblastic Leukemia, ALL.

I spent the next month in the hospital receiving induction chemotherapy for the ALL and the next 6 months for consolidation therapy. During those months of treatment for the ALL I relapsed again for the Myeloma. After I completed my ALL treatment, that’s now in remission, and recovered from that chemo, I began treatment with one of the monoclonal antibodies for the Myeloma. Now, 8 months later, I feel about the best I have in years and my blood levels are all in the normal range.

Although I’ve gone through a lot, especially since being diagnosed with the ALL, I continue to enjoy and live my life. I worked 6 more years after my diagnosis with Myeloma. I specialized in treating people with cancer as a PT. My cancer diagnosis brought me closer to my patients since they knew that I understood what they were going through. I continued to travel to Europe to teach, attend conferences and for pleasure. After my retirement I  have also been volunteering for the American Cancer Society and been very active as a board member and program chair of my local Myeloma support group.

Encouraging others who have been diagnosed with cancer has been a mission of mine for many years. Now, as a person with two blood cancers, I find that that helps others, but also me. With the treatments that are now available to us, we often can live fairly normal and long lives. Who would have thought that I would still be here when I was diagnosed 10 years ago? I attribute that to the wonderful medical care I have received from my oncologist and his team, the research that has led to more effective treatments and to the support of my friends and family. But, most of all, is my own self education about my cancers and my relationship with my oncologist. I believe that being an active partner in my care has been extremely important. I look forward to continuing to enjoy those things in life that are important to me.

Nancy Stewart
Multiple Myeloma 2008
Acute Lymphoblastic Leukemia 2016

Health Tips To Support A Senior Through Cancer Recovery

Cancer can happen at any age, but it’s most common in the elderly. The American Cancer Society explains 87% of all cancer cases in the United States are diagnosed in people 50 years old and over. Cancer in older age brings with it many unique problems, including, pain, depression, loss of strength and fitness, cognitive decline, and dementia. If you’re caring for an elderly cancer patient, it’s important you coordinate with their cancer team. Recovery plans focus on physical, social, and emotional health to give senior cancer patients the best quality of life possible.

Prepare healthy food

It’s never too late for anyone to start eating healthy. It’s important you give the elderly person you’re caring for enough nutrients from a variety of fruits, vegetables, dairy, pulses, and grains. Red and processed meat should be limited, or preferably avoided altogether. You should also check with their doctor whether they have any special dietary requirements.

Cancer patients often have reduced appetite. The key is to give them calorie-dense food — soups, smoothies, and stews, for example. It’s also important to set routine family meal times. Socializing is an important part of recovery.

Protect their safety

An elderly cancer patient is in a vulnerable position. Do your best to make sure they’re safe around the home before they return from the hospital. Install night lights in the hallways and bedrooms. Ensure carpet is securely fixed in place and remove loose rugs to prevent falls. They may need help with everyday tasks, such as, bathing, dressing, moving around, and going to the toilet.

Encourage exercise

Unfortunately, cancer treatment takes its toll on the body and mind. It often leaves patients fatigued, which is a feeling that can often strike without warning. Nonetheless, a gentle yet regular amount of physical exercise is highly beneficial seniors. Not only does it boost their mood, but it also helps improve mobility, strength, flexibility, and balance.

Give emotional support

Cancer treatment is stressful, but talking about it can help. While it’s up to the senior you’re caring for how much they open up, let them know you’re there for them if they want to talk. They may also be interested in joining a support group for practical advice.

Ultimately, it’s important your senior has a social and emotional outlet to support them and make them feel less alone. If you ever have any problems or concerns, let their cancer team know. You’ll be given as much help and support as you need.

About the Author: Chrissy Rose is a Content Manager and is working to build one of the best senior resource sites.

Can we talk? It’s important.

“Tis impossible to be sure of any thing but Death and Taxes,”
~ Christopher Bullock, “The Cobbler of Preston”

With tax day coming up on April 15, most of us are focused on the second thing mentioned in that quote. Taxes are discussed freely – sometimes at volume! – in many social and community settings, with everyone having both experience, and an opinion, on the topic.

That other utter certainty of the human condition – death – is rarely spoken of in public, or private, spaces, beyond hushed whispers, or the pious prose of the funeral eulogy.

I’d like to invite you to change that paradigm. I encourage you to talk to others, particularly your family, about how spelling out what your ideal end of life scenario is, and writing it down for future reference. You don’t have to be actively dying to start thinking about what you’d like to have happen when that time comes. It can even be fun – really! – if you turn it into a game.

You might be surprised to hear that there are not one, but four, actual games available for this very purpose. Here’s the list:

  • The Circle of Life comes from Dying Matters and In the End Care in Britain. This card-based game is aimed at increasing public understanding of how they can plan ahead and make their end of life wishes known. The packs of cards were developed with the public in mind, and cover issues around planning ahead, conversations about end of life, and funeral matters.
  • The Conversation Game also comes from Dying Matters. The game consists of 36 cards, each carrying a short statement about the things people often cite as being important to them in the last weeks or months of life. One of the cards is a ‘wild card’, which aims to encourage the expression of more personalized preferences and prompt further or deeper conversation.
  • The Go Wish Game comes from the CODA Alliance. It’s also a 36 card pack, like the Conversation Game, and can be played as solitaire, in a Go Wish pair with someone who you want to be involved in and aware of your end of life wishes, or online in the Solitaire version.
  • Hello (formerly called My Gift of Grace) is a game that centers around the answers to questions in a booklet, which are then scored on cards. The game can be played by a multitude of players at the same time, with five being the game’s normal setup.
  • BONUS – Engage With Grace – it’s not a game, but it’s a great conversation starter. There’s a single slide for download, which you can use in any setting to get a conversation started. The slide has five questions that are the basis of starting a conversation on your end of life wishes, and how to get them written down and shared with the right people.

If you’re wondering whether playing a game on something like this is a good idea, the American Journal of Hospice and Palliative Medicine published an article in July, 2016, titled, “Can Playing an End-of-Life Conversation Game Motivate People to Engage in Advance Care Planning?” where the authors stated in the conclusion that “This pilot study found that individuals who played a conversation game had high rates of performing Advanced Care Planning (ACP) behaviors within 3 months. These findings suggest that using a game format may be a useful way to motivate people to perform important ACP behaviors.”

So … get your game on. You can play alone, or invite your loved ones to take part. Encourage everyone you love to figure out, and write down, how they want their last months, weeks, or days to unfold. And it’s way more fun – and important – than doing your taxes.

3 Keys To Choosing A Healthy Snack

With 94% of Americans snacking at least once per day, it’s never been more important to pay attention to what we’re snacking on. Many of the snack foods we’re bombarded by at the grocery store are deceptively marketed to us as ‘healthy.’

But what exactly makes a snack ‘healthy’ in the first place? With all of the marketing ploys we see nowadays on snack foods, like low-fat, sugar-free, light, and reduced-fat, among many others, it can be hard to determine what’s actually a good and healthy option.

Here are a few tips for making nutritious choices when a snack attack hits.

1. Read the Nutrition Facts. Whether you’re browsing the snack aisle at the grocery store or looking for something to grab quick at a convenience store, make sure you’re turning the package over and looking at the nutrition facts. Try to choose a snack that has a higher protein and fiber content while staying away from foods that have a lot of added sugars. Unlike foods that are loaded with sugar, foods higher in fiber and protein help increase satiety hormones which make us feel full.

2. Read the Ingredients. It’s not enough to just look at the nutrition facts. Make sure you’re looking at the list of ingredients as well! Many of the snack products we’re surrounded by everyday are laden with all kinds of preservatives, chemicals, dyes, and sweeteners. A good rule of thumb is: the less ingredients, the better!! Luckily, there are a lot of great snack options out there that are made with quality, wholesome ingredients. Some of our favorites include:

Hint: Be especially cautious with foods that say things like low-fat, sugar-free, light, and so on. Many of these foods combat the lack of sugar, fat, or sodium with other harmful sweeteners and chemicals to make sure it still tastes good!

3. Choose Whole Grains. If you’re looking for any kind carbohydrate-based snack, try to stick to ones that are made with whole grains. That includes things like crackers, granola bars, and popcorn. Some of our favorite options include:

Don’t forget to look at the ingredients though; sometimes foods labeled as whole grain don’t actually contain very many whole grains! When you’re choosing a whole grain snack, make sure the whole grain is within the first couple ingredients on the list. Otherwise, the amount of whole grains that are actually in the product is probably negligible.

The moral of the story? Stick to real wholesome foods! Try to snack on things like fruits, veggies, nuts, and seeds to get the most bang for your buck when it comes to nutrition. And if you are reaching for a snack that’s packaged, be sure to sure to look at the nutrition facts and ingredients. Typically the fewer ingredients it contains, the healthier it is!

Introducing Claire Snyman: An Empowered Patient

“Change is the only constant” rings true in my life.

In 2010, I was diagnosed with a rare non-malignant brain tumor after the onset of vertigo and migraines. My son was only four at the time. During my patient journey, I had differing opinions and changes in treatment from the standard of care and realized a few important things. How critical it was to partner with my medical team, how important it was to be active in my health care and be my own advocate and how important it was to keep asking and get a second (or third) opinion if needed.

I started keeping track of all my medical records, educated myself on my condition so I could have informed discussions with my medical team, made a list of questions before each appointment and started to manage my medications and appointments – it was like a full time job!

In 2012, I became acutely ill with vertigo and migraines. I knew something was wrong even after the specialists and the ER doctor sent me home. Because I was active in my health care and educated about my condition, I kept asking questions. It was finally confirmed that my brain tumor had doubled in size. My brain was swollen and I needed brain surgery to survive. I am forever grateful that my husband and I kept on asking questions – it saved my life.

This experience highlighted the importance to me of being your own advocate, putting your health in your own hands and not being a passive participant in your health care. It’s also important to connect, communicate and collaborate with your medical team – in the interests of a better outcome.

After my recovery, I looked for various ways to use my patient journey constructively.

– I co-authored a collaborative study between patients and neurosurgeons at Johns Hopkins University to help increase collaboration between patients and health care teams and get more information in the public domain.

–  I am passionate about inspiring people to put their health in their own hands, having personally seen the impact it can make to a person’s life.  I developed The TEAM Approach for Empowering patients  (Track, Educate, Ask, Manage) – a simple and easy-to-remember tool to help individual’s transition to being an active participant in their health care.

I recently spoke at TEDxStanleyPark 2018 on “Your health is in your hands” and how it might save your life – hoping this message will activate others to become proactive in their health care.

I’m a firm believer than when something in life is no longer an option, when a door closes, another door opens. It may be different to what you expected, but if you are open to looking for it – you will find it. That is definitely true for this chapter in my life!

Introducing PatientTrueTalk.com – A New Way to Help the Newly Diagnosed

I’d like you to imagine or remember that moment you are told you have cancer and the doctor informs you of your treatment options, whether surgery, radiation, chemotherapy, clinical trial or some combination thereof. Time is of the essence and you need to make a decision soon. Aside from the people in the room with you (your doctor, nurse and spouse/partner/caregiver/friend), where can you turn for objective advice?

When I was first diagnosed with stage three melanoma in 1999, there were few, if any, options. Whether they were helpful was another story. Some recommended I find a support group specifically for melanoma. What chance was there that I could find a support group nearby with an imminent meeting where there was someone in attendance who could relate to my specific situation? I didn’t think it likely and never sought one out.

Today, there are various online communities that offer support. Like a live support group, you still need to hope that there is someone with relevant experience monitoring and reviewing your online community in the time frame you need. You may then need to wade through a multitude of responses to your post and hope there is helpful advice in their somewhere. I do believe these resources are extremely valuable. If you’re like me, however, you want to find someone who has experienced exactly what you are about to experience, then reach out for a private conversation.

My name is Dan Engel and I recently founded PatientTrueTalk.com to solve this pressing issue. I am a stage four metastatic melanoma survivor who collectively has endured ten operations, gamma knife surgery on a brain metastasis, radiation treatment, six clinical trials and seven years of a maintenance clinical trial. I’d like to think that my medical record, and the fact that I’ve read and signed well over ten informed consent forms (one for each trial and each amendment), gives me some credibility as an expert on the cancer patient experience, with a particular focus on clinical trials.

When I was diagnosed and faced my first clinical trial, I desperately wanted to speak to someone who went before me. Among other things, I wanted to know about side effects, life during treatment, state of mind, pain, etc., or basically everything I read about in the informed consent form. I wanted to know what to really expect from a patient’s perspective, not that of a nurse or doctor. I understood that my experience by definition would be different, but relished that opportunity to speak with a fellow patient. During the countless time I’ve spent in infusion rooms, I made sure to speak with anyone else who might need a friendly ear.

Recently launched, PatientTrueTalk.com is the only patient-to-patient registry where patients and/or their caregivers can create profiles with as much information as they feel comfortable sharing, and find matching profiles based on algorithms created by some of the country’s top clinical oncologists. Patients/caregivers can also search along their diagnosis/treatment parameters, refining their search based on the results provided. They can then send secure messages directly to those who they believe represent the closest match. Once a connection is made, the two parties can speak off-line and hopefully form a friendship. My profile is the first “patient advocate” included on the site.

I believe that there are thousands and thousands of survivors like myself who provide informal advocacy on an ad-hoc basis all the time, and that would love to be part of a more organized effort to help fellow patients and their families. The only thing missing is the technology platform to aggregate those survivors. PatientTrueTalk.com fills that void. To be effective, however, the site needs thousands of survivors who have battled every type of cancer to register as “patient advocates” to be available for the newly diagnosed and/or their caregivers.

My call to action is this: if you are or know a survivor, please register or encourage others to register on the site.

If you’d like to learn more about my trials and tribulations (pun intended), check out my book at www.thrivingthrucancer.com.

Spot These Early Cancer Symptoms – They Can Save Your Life

The word “cancer” is terrifying, but it’s hopeful to know that early detection can lead to increased survival. Over 140 million Americans will get cancer in their lifetimes, but early detection can lead to better treatment and boosts one’s chance of a cure. That’s why it’s so important to be in tune with your body and regularly check for early symptoms that you might have the disease. In this way, checking your body for signs of cancer can form part of your self-care goals. You’re looking after yourself and increasing your longevity.

Cancer is not always easy to spot. Although it might present with a bump or lump, such as in the thyroid or breast, these are not the only symptoms to look out for. Sometimes, cancer in one part of the body won’t show up there. An example is pancreatic cancer. It will show symptoms when the cancer’s big enough to press on other organs, so an early symptom could be pain in the belly or back. However, there are some early, general signs that something’s wrong with your body and the cause could be cancer. Here’s a rundown of the most common symptoms associated with cancer. While it’s important to realize that these symptoms could be something else, it’s always worth checking with your doctor if they persist so that you can get the proper treatment.

Losing Weight Without Trying

If you’re not on a diet but you’re losing weight, this could be a sign of various illnesses, such as diabetes. However, it could also be a sign of cancer in the body. Unexplained weight loss is a common symptom of cancers of the stomach, esophagus, pancreas, and lung.

Extreme Tiredness

If you feel fatigued even when you’ve got a good night’s sleep, and this is a regular occurrence, cancer could be to blame. Fatigue is usually an early symptom of cancer such as leukemia, but it can also present with colon or stomach cancers that cause a loss of blood which goes unnoticed.

Skin Changes

Skin cancer will obviously show up as changes to the skin, such as a sore that doesn’t heal or a mole that’s undergone changes in color. However, skin changes can also be a symptom of other cancers. Rippling or dimpling of the skin can signal breast cancer, for instance, while reddened skin can be a symptom of lung cancer, especially when it’s combined with difficulty breathing or a faster heart rate.

Changes In Bowel Movements

Diarrhea and constipation can arise from a variety of things, such as diet, but if they persist they can be a symptom of various cancers. An example is ovarian cancer, which might also present with bloating and gas.Colon and rectal cancer are also marked by changes in bowel movements, especially if they occur suddenly and persist.

Although there are many symptoms that can signal cancer in the body, the important thing is to note any changes that aren’t normal for you. Whether it’s changes to your skin, energy levels, or bowel habits, anything that doesn’t go back to normal after a few days is worth checking with your primary caregiver.

About the Author: Chrissy Rose is a Content Manager and is working to build one of the best senior resource sites.