cancer-connectionEsther:   

For many cancer patients and care partners today, the first place they turn for information—and some initial support upon diagnosis—is the Internet.  While we are always thrilled when folks find our website, Facebook has globally become a station on the digital highway where people congregate, share feelings, experiences and information in a very “real-time” way, and that is very important when faced with a scary and—many times—unknown future.

We know this all too well since Andrew has been living with chronic lymphocytic leukemia (CLL) since 1996 and a second cancer, myelofibrosis, since 2011. We’ve both joined various Facebook groups in order to not feel alone and to contribute comments to help others.

Understanding this strength of Facebook, we decided to collaborate with another organization dedicated to patient empowerment, Liquid Grids, to launch The Cancer Connection page on Facebook.  We created this page for a few reasons:

o   To provide a safe and monitored space for our existing Patient Power community members to easily converse with each other about issues that matter to them;

o   To encourage patients and care partners who have not yet discovered the global Patient Power community and website to begin that relationship on Facebook, and interact with other people that have similar concerns;

  • To raise awareness of the deep and expansive information we have on the Patient Power website and to highlight those resources as they are appropriate in conversations on The Cancer Connection page;
  • To let every cancer patient and family member know they are not alone.

Some of you may be familiar with the various Facebook pages we have curated for a while. Some are disease-specific and those will eventually be discontinued as we work to make The Cancer Connection a vibrant conversation spot for all who are on the cancer journey—and we will be able to support creating disease-specific dialogue there if it is needed.

The Patient Power Facebook page will continue to have postings about new content that you will find on our Patient Power website, and we will share news about patient advocacy, special events and other information specific to Patient Power as an organization.

Andrew:  

Cancer is definitely a “family affair.” I’ve known that since 1996 when I was first diagnosed.  I understand Esther, our three grown children, and other close relatives have questions and concerns. But none of us is alone and people have gone before us. That’s where The Cancer Connection comes in as a place for issues, feelings and empowering conversation about the many aspects of facing cancer and how it affects the lives in a whole family.

Esther:   

As a care partner, I am looking forward to hearing more from others who have supported loved ones through cancer treatment as well as survivorship.  I find that sharing experiences, information and mutual support really helps me through the ups and downs of living with some uncertainty about the future that couples who have not dealt with cancer do not have to think about daily.

We’d love you to join The Cancer Connection community.  This is a very new venture, and already there are wonderful insights and information nuggets being shared among those who have “liked” and “followed” the conversations happening.  We’d also welcome your feedback—you can do that right on The Cancer Community page as a post.  We have a great team to moderate and respond if you have questions, and both Andrew and I are there daily to be part of the growing support we can give each other.

It takes a village!  Wishing you and yours good health,

Andrew and Esther Schorr

 

The recently released animated movie “Inside Out” explores the emotions of an 11-year-old named Riley as her family moves from her happy, Midwestern, hockey-loving life to San Francisco.  It is a sweet interplay about Riley coming to grips with the family’s big move and changes it has wrought.

The movie was filmed from the perspective of a central control room located in Riley’s head and viewing the world through her eyes as though it is an airport control tower.  The control room is staffed by the emotions Joy, Sadness, Disgust, Anger and Fear.  Amy Poehler plays the character Joy, while Lewis Black plays Anger.

For those of us who have cancer, we could just as easily add Pollyanna and Negativity to that same control room resident in our minds.  At one extreme, Pollyanna is an excessively cheerful, overly optimistic character who seems to find something positive in even the worst of circumstances.   The converse is, well, Negativity, where nothing is good or right.

Ever since this particular topic came up as a potential blog, my wife has deliciously watched me get tied into knots.  You see, she grew up in a family where they always find a glimmer of hope in the darkest of clouds.  In a classic example of opposites attracting, I grew up in a family that is genetically predisposed to looking at the 1/100th of 1 percent of the cup that is empty.  In fact, I went to graduate school to learn how to quantify risk. Go figure.

Obviously, getting a cancer diagnosis is not a good thing, and my worry level was pretty high at first.  However, after processing the initial shock of being diagnosed, my wife sardonically said that my cancer is about third or fourth in her list of worries given all the other challenges we face.   All I have to say is when your wife doesn’t let you complain, you have no choice but to be more positive!

Nonetheless, I confess to being at both of these extremes at one point or another in the nearly four years since receiving my diagnosis with CLL.  On the downside, I have learned the hard way that age discrimination in employment is real.  As mentioned in several previous blogs, a very special friend recently succumbed to cancer.  A few months immediately after being diagnosed, I had a small meltdown when coming to grips with the fact that I have an incurable cancer.

At the other extreme, I have also experienced incredible hope and joy.  I am regularly buoyed by the incredible advances in Precision Medicine and new treatment agents including Venetoclax, ibrutinib, and idelalisib.  I vividly remember the sweet taste of completing three century bike rides in four weeks, one of which was a personal record (PR).  And I will never, EVER forget jumping out of a perfectly good airplane at 12,000 feet with my 18-year-old daughter!

I suspect that many cancer patients simply crave the normalcy they had before their diagnosis and just want to thread the needle between these emotional extremes.  Despite being in watch and wait, I get up every day, have a good cup of coffee, go to work, train regularly with my coach, enjoy my family, and generally don’t let CLL define the day.

For somebody who regularly needs a good adrenaline jolt, it is hard to believe that I would say boring is good!  For example, just last week, my wife and I went out to dinner with some friends, and we just laughed a lot.  These people all had their serious brushes with cancer, but other than in passing we did not talk about it much and just really enjoyed each other’s company.

So in closing, I am playing the hand I have been dealt, not the one I necessarily want.  Not sure what else one can do

Please share your story in the comment section about “threading the needle.”  It will help others in their battle.

Thank you for reading!

Always hope. Never quit.

–           C.J. Chris

calm-organized2Being a care partner challenges one to the very core. It involves a commitment at both a physical and emotional level. It is often a full-time position, with lousy pay, much like having a job. There is no vacation. There are no days off. Your business is caring for an ailing, and oftentimes, dependent family member. It’s not fun, and it definitely has its share of challenges. Despite the physical and emotional drain associated with being a care partner, good organizational skills can help you cope and make the job of care partnering seem less overwhelming. The benefits of good organizational skills are huge and can help reduce your stress and increase your efficiency in the caregiving tasks at hand. Being organized includes a variety of different skills, including, but not limited to, physical organization, mental organization and time management. How do these skills impact you?

Physical Organization

Clutter is often the culprit when it comes to disorganization. It can be stressful, resulting in feelings of anxiety. It can create a sense of claustrophobia. During a long illness, there are lots of papers, forms, invoices, bills, medical reports, etc., to deal with. It’s essential to organize that physical clutter to avoid madness. Buy some file folders. Label them as needed: unpaid bills, pharmaceutical receipts, over-the-counter medications, paid bills, health insurance papers and bills, medical supplies, health-related transportation costs, diagnostic reports, etc. On a regular basis, perhaps weekly, clear out or shred unneeded papers and file necessary documents in the appropriate folder. This will alleviate lots of paper clutter and will provide an extra bonus of readiness as you prepare for your end-of-year tax filing related to health expense costs.

binderWhen my son was very sick over an 8-month period, I kept a notebook in which I documented every out-of-pocket expense as it occurred. I labeled the pages with headings and even made section dividers out of freezer labels for each section. I allowed 3-4 pages per section. The headings I used were: prescription drugs, non-prescription drugs, hospital bills, doctor co-pays, medical supplies/equipment, health-related mileage, health-related transportation costs, integrative healthcare bills (massage therapy and acupuncture) and health insurance premiums. Once the expense was entered into the notebook, I put a check on the receipt or invoice and filed it in the appropriately labeled file folder. This helped me stay organized and in control of the physical clutter. And at any given moment I was able to see which bills had been paid, stay on top of out-of-pocket expenses, and easily find any paper I needed. I also taped every doctor’s card into the notebook, so all the contact information was neatly and easily accessible whenever needed. I used this notebook for documenting other important information that I might need to easily refer back to, such as relevant communications with the patient’s health insurance carrier, Medicare, pharmacies, physical therapists, dates of special tests and treatments, etc.

Medical supplies and equipment can also be a source of clutter. I used plastic shoe boxes and other such containers for the storage of these items. This kept them neat and tidy. I labeled the containers for organization and easy access. Each medical item had an assigned location, and I made sure to put it back where it belonged after each use. You will find that the more organized you are, the less overwhelmed you will be all the way around.

Mental Organization

calm-organizedThe stress of being a care partner can cause many symptoms, including forgetfulness, short-term memory loss, insomnia, anxiety and depression. Keeping your mind focused and organized can be a challenge when you are juggling the varied demands of caring for a sick family member. It’s important to prioritize tasks and to make to-do lists to keep yourself on track. Understand your personal boundaries, weaknesses and strengths. Focus on your strengths. Not everyone is cut out to be an accomplished multi-tasker, especially when under stress. Don’t beat yourself up if you find yourself unable to handle the many challenging responsibilities of being a care partner. We all do the best we can. You might concentrate on focusing on one task at a time, rather than balancing multiple tasks. Write yourself notes of things that need to get done. Write goals each day for the tasks at hand. Prioritize them by deciding their order of importance. Keep a journal or calendar of things-to do. Engage others to give you a hand in or a break from your care partnering tasks.

Time Management

Time management is a critical component of a successful caregiving workday. Good organizational skills are about making the best use of your time. Have you ever said, “I don’t have enough time? Or, where is the time going?” I know you have. Almost everyone says it until they really master time management. Good organizational skills save time by keeping valuable information easily accessible and goals in focus. Being organized reduces the amount of time you need to dig around looking for important papers, doctor appointments, unpaid bills, etc. Understand where your time goes. For example, if you check your personal email every five minutes, you might want to create a twice-a-day email schedule to more effectively handle your time spent in such activities. Delegate certain duties to others, so you can focus your time on the things you are good at. Maintain a calendar, so you never miss an appointment and can schedule your own personal activities around your family members’ appointments and other obligations. Make lists of things that need to be done for the day and include what time that task should take place and how much time you expect it to take. Be sure to include rest periods for both you and the person you are care partnering with. Prioritize the most important tasks for the best time of the day for the patient and yourself. For example, if the patient likes to bathe at night, don’t routinely schedule that activity for the morning. If you’re not a morning person, schedule doctor appointments for mid- afternoon.

Poor organization leads to frustration and stress that can negatively impact the care you are able to give to your ailing family member. Care partners who have good organizational skills are efficient at covering the demands of the job at hand. PLEASE SHARE YOUR OWN ORGANIZATIONAL STRATEGIES WITH OUR CARE PARTNER COMMUNITY IN THE COMMENT SECTION BELOW. We can all become empowered through the journey of others.

Make every day an organized and empowered day!

Lorrie Klemons, RN, MSN

Care Partner Advocate and Guest Blogger, Patient Power

Co-Founder, PatientAction.com

Patient Advocate/Speaker/Educator/Consultant/Author/Poet

 

[Editor’s Note:  This is reprinted by permission from Antidote.me, a digital health company on a mission working to accelerate the breakthroughs of potentially life-saving treatments, by bridging the gap between medical research and the people who need it.]

Imagine if you – or a loved one – were dying and the doctors could only say, “We don’t know exactly what’s wrong. We know what disease you have, but we don’t know how it works and there’s no sure cure.”

That was my situation ten years ago this month. I cried.

I’d just been diagnosed with Stage IV kidney cancer. There was simply no confident science about how the disease worked at a molecular level, much less how to fix.  I got a treatment that usually doesn’t work, sometimes does, and sometimes kills patients … and nobody knows why I survived, nor how to predict any particular case.

My treatment ended in just six months, and I’m all better. But what a crap shoot. This was hardly precise – it was blind luck.

Cancer is the king of mystery.

Humans want certainty – I certainly did! – but throughout history medicine hasn’t had it. It took eons for us to figure out bacteria, and until then we were powerless to stop infections. Similarly, until the late 20th century we didn’t even understand that cancer is damaged DNA, so any treatment we tried was a shot in the dark.

Sadly, much of the treatment – even in the 20th century – was a best guess based on no science. Even the harshest treatments, such as radical mastectomy, were nothing but ignorant butchering: there had never been a shred of evidence that radical mastectomy had any benefit.

My oncologists were honest about the odds, not afraid to say “We don’t really know.” The microscope told them what kind of kidney cancer I had, not unlike knowing what kind of infection you have, but they still didn’t know how it got there, nor what to do about it.

The Pulitzer winning 2011 book The Emperor of All Maladies: A Biography of Cancer details the slow unfolding of the cancer puzzle, and it gave me empathy for the challenges a clinical oncologist often faces, forced to take a blind shot, not knowing who will respond to a treatment and who won’t. (Years later my oncologist said he likes my follow-up visits, because most of his patients don’t make it. Can you imagine working like that?)

Emperor says that as our knowledge grew, we saw that cancer isn’t like getting an infection, which lands in you and grows – it’s more like being dragged to a cliff over a period of time, as one gene after another goes wrong. Then, all at once, catastrophe. For ages we didn’t even understand what most DNA does – it was called the genetic “dark matter,” with no known function.

I wish I’d had precision medicine. Spread the word.

Now we know that much of the mischief is in those genes, which gives us the power do something about it. As we learned more, at last we could start to deal with it methodically – and, today, sometimes it’s even precise. The precision is in its early stages: a vast world of possibilities is in front of us, though we don’t yet know most of what it means.

The new era is upon us. But news doesn’t travel fast in medicine – thousands of new scientific papers are published every day, and it takes years for new knowledge to reach every doctor.

You can help. Precision medicine is the new horizon of cancer treatments. Just as with the discovery of bacteria, there is much still to be learned, and most cancers aren’t there yet. But work is progressing at an unprecedented pace. For medicine to best achieve its potential, it’s essential that we spread the word.

One way to start learning more and spreading the word is by visiting www.precision-medicine.me – it’s a brand new collaboration of more than a dozen organizations and individuals (including me) aimed at getting the best treatment and trials for cancer patients, starting with lung cancer. I hope you’ll check it out.

Dave deBronkart

e-Patient Dave deBronkart is an international keynote speaker, author, and health policy advisor who serves Antidote as Special Advisor for Patient Perspectives

You may have heard that last week, with a dozen other organizations, we launched Precision Medicine for Me, a unique educational initiative aimed at ensuring that all lung cancer patients know about and have access to next-generation tumor testing. Antidote, along with Patient Power, noticed a problem: patients not served by major cancer centers often […]

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Last week I attended the Precision Medicine World Conference in Mountain View, Calif. A few hundred next-generation sequencing scientists, business folks and vendors were there. But I was among the few patients who actually benefited from their work. That’s a problem. So is the fact that my wife, Esther, and I led about the only […]

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Born a “sci-fi” fan, I can clearly remember years ago watching movies with all sorts of futuristic gadgets and gizmos that made amazing things happen.  If you believed it all then, we would someday be traveling to other planets, extending our life expectancy, producing fuel from readily available resources, doing surgery without large incisions and […]

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I am sitting here staring at a blank sheet of paper, wondering what I have to say to you that will be worth your time reading it. I am no scientist. With the advent of chemo brain, I don’t even really enjoy reading and researching like I once did. So I have no great wisdom […]

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Every week for the last few years, I’ve been commuting from my home in the country with my husband to my job in the city.  I wake up at 4:30 AM on Monday and try to get out of the house by 5 AM, so I can try to beat traffic.  It SHOULD only take […]

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On March 25, 2016, a catastrophic moment in my life changed everything for me and my entire family—my 33-year-old son, Jordan, was diagnosed with cancer along with severe brain disease of unknown origin. Upon being told the diagnoses, my breathing stopped and my heart skipped a beat as I experienced every mother’s nightmare—finding out that […]

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