Patients “schmoozing” at recent in-person events

Patients “schmoozing” at recent in-person events

Some words from the past centuries Eastern European Jewish dialect, Yiddish, have crept into our vocabulary. As I wrote about last year, my favorite is “schmooze,” defined as: “to chat in a friendly and persuasive manner especially so as to gain favor, business, or connections.” Personally, I think this definition misses an important quality of “schmoozing” in that it is usually done with a strong dose of warmth and openness. And, I love it! I have found it’s one of my favorite things to do and, given my role in cancer communications, we have tried to build the “schmoozing” component into everything we do to help patients and family members connect with others and gain confidence. The subtext of the schmoozing we do, whether it is with a patient, a world famous expert, or a family member is: “we are all in this together as a community.”

Patients “schmoozing” at recent in-person events

Patients “schmoozing” at recent in-person events

Now, in 2015, we have also taken schmoozing to an additional level and made it sustained. That means if you become part of the Patient Power community, we don’t schmooze with you once but all the time. It’s the way we interact. And we believe it’s unique. We talk with people, not at them, and we want to know everyone’s story. That’s why our town meetings are not seminars, they are conversations. I like to call them “Oprah for Cancer.” We’ve got several coming up in lung cancer, MPNs, advanced prostate cancer, myeloma, and CLL—from Chicago to Houston to Seattle to Palo Alto. Schmoozing across the U.S. And now in Europe, too. Last year’s myeloma event in Barcelona has now led to an MPN town meeting in London in July and another one planned for Germany. Patients meeting patients and experts. Family members feeling in-the-know.

Having watched this approach blossom at in-person events and now with the “Patient Café” discussions from our partner, the Patient Empowerment Network, I KNOW we are filling an unmet need not just in content, but in tone and style. When we talk about cancer, it is not just about facts, it is about emotion. Connecting with others in the style of schmoozing can help calm fears and get doctors, patients and family members in-sync.

Now that we have seen the benefit of this approach, we are trying to accelerate it. In a couple of weeks in Chicago, the huge ASCO (American Society of Clinical Oncology) annual meeting is held. Thousands of people will be there as the latest news in cancer is discussed and clinical trial results are presented. It used to be that it was just for doctors. Not anymore. We’ve been covering it for patients for years, and now we cover more and more of it “live.” This time chronic lymphocytic leukemia patients around the world will be asking questions on video of Dr. Nicole Lamanna from Columbia University. Not only is she a top specialist, she’s also a very warm “schmoozer!”

My hope is the vast array of players in the oncology world, pharma, diagnostic companies, and medical groups will start to “get it” and allocate more financial support for this style of communication to bring cancer communities together and inspire positive action. Truthfully, too little is allocated now, and statements about “patient centricity” are still hollow. I will not be at ASCO myself but rather in Paris speaking at the Doctors 2.0 conference on this very topic.

But wherever we are, we’ll keep schmoozing. Won’t you join me?

Wishing you and your family the best of health!

Andrew

Care partnering is exhausting. It annihilates your days and trumps your sleep. Its paradoxes require the most delicate of balancing acts between negative thoughts and a positive attitude; of knowing when to establish control and when to relinquish it. It even tampers with your feelings of guilt and love. Care partnering can be isolating.

My friend and colleague, Esther Schorr, has written beautifully and passionately these past two weeks, sharing a glimpse into her world as Andrew’s care partner, wife, and business partner. Many of you no doubt read between the lines that her words resonated with the life you now live as a care partner. Although my husband is now gone, I remarked to her at one point that she had reawakened feelings and memories I had begun to forget. Being a care partner does that to you: it consumes your days and subsumes your life.

But you have a choice: take pity on yourself and expect the same of others, or get perspective, as Esther says.

Perspective is a viewpoint, a measured evaluation. When you have perspective, you are in control of the situation; the situation does not control you. This allows you to practice acceptance and to find whatever silver lining suits you and your partner. It is from this perpetual exercise of measured evaluation and acceptance that your positive thoughts will flow. When you are asked for the thousandth time how things are going, you will be able to honestly answer that you and your partner are going to be okay. Because you are. You have made that decision.

Perspective is also proportional. Everything is not fine, but neither is it unbearable. Life’s difficulties are relative to our dysfunctions. For example, a teacher with good communication skills will find lecturing much easier than a teacher who struggles with public speaking. The trick is to find coping mechanisms that ease the struggle. In our example, the teacher who lacks public speaking skills might find guest lecturers or employ various media outlets to mitigate her speaking responsibilities. She stills has to lecture—but not as often—reducing her stress and allowing time and effort to be focused on her own set of skills.

What are your skills? Do you exercise and eat right? Do you tend to focus on the positives? Perhaps you find humor in a lot of things. Or maybe you know how to set limits and stick to them. These are your strengths. Use them to set expectations for yourself, your partner, your family and friends, even your medical team.

Are you a worrier? Do you approach difficulties with apprehension and passivity? Learn to say, “Yes!” when offered assistance. Join and attend a care partner support group. Give yourself permission to “Take Two”: You take two stress-free minutes and take a mental vacation, breathe deeply, stretch and choose to relax.

Perspective also comes from the act of assessing. Assessment requires intent of action. It is calculated and considered. This is the practical side of being a care partner. Those of you with exceptional organizational skills will excel at this. For those of you less functional in this regard will be challenged, and you may need outside help. Getting organized and staying organized will alleviate some of the stress associated with assessing all of the moving parts that are part of being a care partner. Although not comprehensive, the following list may help you in your quest to achieve or to remain organized with your partner’s health concerns:

  • Create a running list of all your doctors with their name, contact info and specialty. I collect business cards from every doctor ever visited and keep them in a card file.
  • Create a list of all medical procedures with dates, preferably in reverse chronological order (latest on top).
  • Become an expert on your partner/loved one’s insurance policies: medical, dental, vision, auto, home, life. If CMS (Medicare/Medicaid) is involved, be prepared to have some long phone conversations. You are expected to know patient rights and expectations. Hospital social workers are superb resources for this.
  • Know every drug, including “over-the-counters” (OTCs), that your partner/loved one takes: name, quantity, time of day the drug is taken, what it is for, and who prescribed it. Research contraindications. Get to know your pharm tech and pharmacist. They have access to a large database of subsidy and grant information.
  • Have a calendar dedicated to medical appointments and take it with you to every appointment.
  • For some states, you should obtain Durable Power of Attorney (DPOA) even if you are the spouse! In some states, DPOA trumps spouse. It’s usually free to have the paperwork drawn up, and you will want to have it notarized, preferably by the notary on staff at your main hospital.
  • If you are not the partner/loved one who runs the finances in your home, start learning about everything: mortgage, banking, business, retirement, investments, car payments/tabs, etc.
  • Start collecting all of the website user names and passwords in one book. I keep all of mine in a journal created by the same people who write the “For Dummies” series.
  • Have the talk about Wills & Testaments. Know what it says, where it resides, and who your lawyer is (including contact information).
  • While it will be hard, have the Advanced Directive conversation. DO NOT put it off. Have it more than once. Be confident of your loved one’s wishes. These are not decisions to be made while under the stress of end-of-life care or grief.
  • Ask your partner/loved one’s doctor for information about palliative care and hospice. Use of these programs do not necessarily indicate the end of life; rather, it is patient-directed comfort care. Some doctors may discuss a POLST sheet with you also. If you have questions, it’s never too early to ask.
  • Decide ahead on funeral arrangements, and then make them. Again, it’s never too early to start. I knew my husband’s wishes, but I had failed to make the necessary prior arrangements. You cannot imagine how difficult it is to have this discussion less than an hour after your loved one has passed.
  • Make a list of all the things that need to be done around the house including errands. When friends ask how they can help, you won’t have to remember what needs to be done. If this is too stressful, ask one person whom you trust implicitly to run interference for you. They can help organize the well wishes and offers of assistance.
  • Find a person or group with whom you can be totally honest. Schedule time to talk to them. Tell them about how lonely and isolated you feel. Share your frustration and resentment. Talk about the future and your fears.

We all hope for the best. We desperately want our loved one to get better, and some days will be better than others. Enjoy these moments and capitalize on them. The hard reality is, though, that your loved one’s health is now central to your daily living. And health is not a given nor a certainty. Make every moment count. My husband’s health slowly declined over the space of five years. During that time, I focused on making him comfortable, making memories, and living with no regrets. It’s been three years now since he passed. I may not have him anymore, but I have a lifetime of sweet memories and absolutely no regrets.

Standing in the storm, adjusting my sails,

Sheryl McIntire

This past weekend Andrew and I traveled to Niagara Falls, Canada to join more than 200 CLL patients and their care partners to learn about the latest developments in treatment from top researchers and clinicians, to find out about clinical trials, and to make connections with others like us as a means of mutual support.  Andrew moderated a patient panel where we heard about the varied experiences of diagnosis “out of the blue,” the trying time that “watch and wait” brings, the tough treatment choices and the ups and downs of getting through treatment, and the inspiring stories of how each person has coped with having a chronic illness as a strange bedfellow.

I had the honor of co-leading an informal discussion with more than 50 care partners at the conference.  Together with a wonderfully warm and respected oncologist—Dr. Graeme Fraser—we spent the good part of an hour discussing the challenges of coping with the shock of a loved one’s diagnosis…how to deal with the stress of juggling children, home duties, work obligations, and staying strong for a partner who is ill…when to ask for extra support from family, friends and professional help…and what kinds of changes in intimacy and communication can happen when couples are going through such a stressful experience, and how to come out the other side together.  There were no right or wrong answers that came out of this discussion—rather, it was a chance for care partners to simply compare notes, to gain some ideas, and to drink in some encouragement from others who had been down the same road, and to realize that each of us is not alone.  I didn’t decide to lead this care partner session because I felt that I have any clear answers or wisdom to share.  I decided to commit time and energy to connecting with other care partners to “pay it forward.”

When Andrew was first diagnosed with CLL, I not only felt sorry for him. I felt sorry for me.  I was angry at whatever greater force had brought this illness into our lives—asking “Why Andrew? Why me?”  I was anxious, depressed, scared and very confused.  It took compassionate counseling, medication, and the incredible love of family and friends to get me to an emotional place where I could fully be present and supportive to Andrew as he went through his journey as a patient.  And it took the passage of time, Andrew’s transition from patient to survivor, some more counseling as a couple and individually, and sharing experiences along the way with other care partners to turn my self-pity into perspective.  It’s a bit like climbing a big hill carrying a very heavy backpack. And when you finally reach the summit and look back at how far you have come…you have perspective.  I put one foot in front of the other… my partner is with me now, and really all we have for sure is today. The rest is out of our hands.  And so we keep on going—living life to the fullest, now.  Perspective.

I believe that just as patients need lots of support and encouragement to go along with the medical treatments they need to get back to good health, care partners need their own kind of support in order to do what is needed for a loved one who is ill, recovering or is now a survivor who will always hold the specter of recurrence close at hand.  Becoming a care mentor and advocate has channeled the energy it would take to feel sorry for myself into helping and supporting others—and it makes my journey easier, more gratifying and life-affirming.

Have you been able to find perspective? How? Tell me in the comments section.

Sincerely,

Esther Schorr

Are you a care partner looking for more advice and support? Visit our Care Partner Center.

Andrew and Esther Schorr

Andrew and Esther Schorr

When Andrew was diagnosed with CLL (chronic lymphocytic leukemia) in 1996, all I could imagine as a future was widowhood.  With two small children and hopes for a third, my grief at his diagnosis combined with deep-seated fear of being left alone literally immobilized me.  It was only through counseling—together and individually—and the addition for me of medication to calm the anxiety that has always been part of my DNA, that I was able to get a grip on what I needed to do to support Andrew, shield my young kids from the pain and sadness we were feeling, and come to terms with how we together would meet the challenge of an illness we knew had no cure and variable outcomes.

By nature, Andrew is a much more even-keeled, pragmatic sort—I have always depended on him to look at a bump in the road or an unexpected curveball through an optimistic lens.  This was a tough situation for even him to view this way, but together we decided that the best way to get our heads around what this really meant was to learn as much as we could about the disease, find out how the illness was treated, who were the experts, and talk to others further down the treatment road.  Somehow, making what was completely unknown a little less mysterious made it a bit less scary and made us both feel just a bit more in control.  This concept of “knowledge is power” has stuck with us through Andrew’s CLL treatment in a clinical trial and a lasting remission, a second cancer diagnosis, and current treatment with a cutting-edge drug that continues to allow him to lead a very full and active life.  But I don’t want to spend time here retelling the diagnosis and treatment story…I want to share how I, as Andrew’s care partner and life partner, have come to put one foot in front of the other every day.

From the moment Andrew was first diagnosed with cancer, it was abundantly clear that neither of us could have prevented it.  This was not a controllable variable in his lifestyle, not attributable to bad or risky behavior—it just happened.  So, as Andrew’s partner, there was really no way I could say “If only you had…” or looking to the future say “If you do X, maybe this will just go away…”  I could not “will it” to retreat, nor could I affect how the course of the disease and its treatments would unfold.  I had to simply let go of control.  I could help research clinical trials, support Andrew through treatment, but most of all I had to make a decision about how I would cope with a greater level of future uncertain than in a partnership where cancer—or any chronic illness—is not a part of the daily equation.  My decision has been to live in the NOW as much as I can.  But it was not a quick route to that conclusion.

One of the most difficult periods of our shared journey was during the first four years after Andrew’s diagnosis.  With some chronic cancers, it is not at all unusual to be told “let’s just watch and wait”—no treatment now because treatment would no doubt be worse than the minimal symptoms typical in the early course of disease.  Andrew literally had NO symptoms for a few years…at least none that impacted his activities at all.  He ran many miles a week, biked, worked full-time, handled the chaos of a house full of young children—it all felt normal.  The only symptom we knew of was a rising white blood cell count.  Every few months, Andrew had a blood draw and came back with an ever-rising number. No symptoms, just numbers.  It was this “no nothing and wait” that made me crazy…with fear and anger.  How could the doctors just sit by and watch Andrew get deeper into a potentially terminal disease state?  How could I possibly sleep at night knowing that with each passing day something bad was getting worse and that sooner or later the proverbial “other shoe” would drop?

The few days before Andrew had to go in for his blood draw were hell for me.  On the one hand, I hoped for a nice surprise of a no-progression result.  And on the other, I had to steel myself for ever bigger counts.  The truth be told, I felt a great sense of twisted relief when it was finally time for Andrew to get treatment. NOW we were doing something!  The clinical trial process has its ups and downs, for sure, but during those six months I came to the conclusion that the only way to emotionally survive and support Andrew was to make the most of each day together, have some measure of faith, and let go of any delusion of true control.

Living in the now doesn’t mean that I—that we—don’t think about the future at all.  We do.   We agreed that living overseas for an international experience was something we’d love to try—so we made a plan and did it. We plan trips to countries we’ve never been to—and we go. We want to be closer to our family than we have been of late, so we plan to move closer to them in the next year.  We are blessed to have the resources to do many of these things. And even if some of them stretch us financially or logistically, we try to make it happen anyway.  As Andrew likes to say, “If YES is at all possible, we do it.”  By operating this way, I feel as though no matter how our journey together unfolds, we won’t be able to say “if only…” about very many things.

Do I ever feel scared?  Afraid that another shoe will drop with Andrew’s health?  Do I get angry that this is part of our life together? You BET I do.  And when that happens, I have a good cry…I reach out to my closest comrades and lean on them for comfort.  And I have a conversation with myself that essentially says, “I have choice here…I can crawl into a deep dark place, feel sorry for myself, for Andrew, for my children, and become immobilized as I was so many years ago…or I can choose to put one foot in front of the other, enjoy today…enjoy my time with my life partner, do things that make me happy, bask in the joy of my amazing children and a world that never stops surprising me…and let this unfold…because I cannot change the outcome—I can only live in the now…”

How have you coped with “watch and wait” as a care partner? Share your story in the comments section.

Stay tuned for Part 3 of this blog series, as I share some thoughts about how becoming a “care mentor” and advocate has helped put Andrew’s and my journey in perspective.

Sincerely,

Esther Schorr

 

Are you a care partner looking for more advice and support? Visit our Care Partner Center.

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