Shifting Perspectives of Medical Oncologists and Doctors in General

I was diagnosed with metastatic breast cancer in September 2009. Prior to that time, I didn’t give much thought to choosing a doctor or the role a primary care physician would play in directing my care.

I was 43 and had enjoyed good health. Doctors were for sick people and I was not sick. At least I didn’t think I was.

I chose my primary care physician for his proximity to my home. I felt a little foolish making an appointment with no specific complaint, but all signs pointed toward my employment (and attendant insurance benefits) winding down, so I scheduled a check up. The nurse practitioner felt a hard spot on my breast and gave me a prescription for a diagnostic mammogram. It didn’t seem urgent…I finally  made an appointment a few weeks later.

I didn’t know it at the time, but after I went to that appointment, I crossed the border between good and bad health. Although I have continued to feel well, I am a cancer patient for life. I haven’t kept an exact tally, but I think I must be close to my 100th oncologist appointment. Many are not so lucky–I look forward to many more appointments!

In 2009, in the course of delivering the bad news, the radiologist told me I had to see a breast surgeon. I asked my PCP for a referral–he sent me to a surgeon at my community hospital.

At this time, it was thought I probably had Stage 3 breast cancer. The surgeon said I would need a mastectomy (big tumor in a small breast ruled out a lumpectomy) and probably chemotherapy and radiation afterwards.

Prior to scheduling surgery, the doctor sent me for a complete battery of imaging tests: MRI, CT, PET and bone scan. The bone scan revealed a small volume of mets to my spine. Surgery was canceled. My surgeon arranged a bone biopsy and referred me to a community oncologist in her hospital’s system.

I told the surgeon that for the sake of completeness I would be seeking a second opinion at an academic cancer center. She wasn’t very supportive of this. She made a case for staying within her hospital system. She said I would have difficulty scheduling appointments with specialists at the academic center–she, by contrast, could simply pick up the phone and easily slot me in to whomever I needed to see. She also said my records would all be at the same place, easily accessible. She assured me that “you can get everything here that they have at [the academic cancer center].”

Although I was still trying to wrap my head around my diagnosis, a faint alarm bell sounded when the surgeon tried to dissuade me from going for a second opinion. First, as a practical matter, I was  a new patient: My patient record consisted of a diagnostic mammogram, an ultrasound, three imaging tests and her notes.

It was hardly a massive archive that would be difficult to collect and  transfer into another institution’s electronic medical system. Second, as I waited in the MRI holding room–a windowless broom closet opposite the room housing the machine–it was clear to me that the small hospital did not, in fact, have the same things as the academic cancer center. Interestingly, last year, the surgeon’s medical group opened a state-of-art center dedicated to cancer treatment–so clearly there was room to grow and improve.

I went to see the oncologist my surgeon recommended. The oncologist and her colleagues worked out of a suite on the third floor of a building in an office park. Although I had a port, it could not be used to draw blood because there was no RN on duty. The patient exam room had mismatching chairs and  there was no privacy curtain–after the oncologist spoke with me, she handed me a paper gown and turned her back while I put it on. Even though the doctor would soon be examining me, it felt very odd.

As the oncologist started her exam, she yanked the gown off of me, as though she were a magician  demonstrating her ability to snatch a cloth off a table without disturbing the silverware, plates or glasses atop it. I was left clutching the paper table runner.

During our conversation, the doctor said she would need the results of the bone biopsy but for the moment, based on the pathology of my fine-needle biopsy, it looked as though I was ER/PR positive and HER2 negative. She said I would probably start on Avastin and Taxol and she proceeded to describe its side effects, with hair loss topping the list. I asked to see the chemo suite.  No patients were getting chemo–I saw a small room with four treatment chairs.

When I went for my second opinion, I was very surprised the academic center oncologist said she would recommend I start on Tamoxifin and ovarian suppression. Later, at home, I found an article on the consensus on the treatment of metastatic breast cancer.  It confirmed what the second opinion doctor said: You start with the least toxic option first.

I was furious. Why had the first oncologist recommended such a radical approach? Why had she told me to expect to lose my hair? Since I had a low-volume of bone mets it could be argued she felt an aggressive approach was warranted. It also could be argued  the Avastin and Taxol to be given in her office was far more lucrative than a bottle of Tamoxifin procured from the local pharmacy for $25 per month.

When I saw the community oncologist again, it was as if she had never proposed Avastin and Taxol. She said nothing about either drug. She said she would recommend tamoxifen. I showed her my notes from our prior visit and asked her why she had made no mention of tamoxifen.

“Are you uncomfortable with the medical advice you’re getting?” she asked in a patronizing tone. As if she was saying “there, there, don’t upset yourself over this trivial detail.” She then gave me some papers for a clinical trial and asked me to consider participating. I knew this was not the doctor for me.

Early on, I relied on my brother, John, who is a physician, to help me navigate my care options. It was he who suggested the academic cancer center. I also asked him to explain the various tests and their results and cancer in general. He was very patient and helpful. I remember asking him to come to my second opinion appointment–I felt like I was going into a duel and he would act as my second.

As a newly diagnosed cancer patient, I was  extremely vulnerable. I was emotionally fragile and entirely ignorant of the disease and my treatment options. I relied on my PCP to help me navigate an unfamiliar and frightening reality.

My now former PCP is a kind man and truly cares about his patients and serving our community. But over the past seven years,  I have learned he is not especially knowledgeable about the broader world of cancer. Last year, I had to see him about some minor ailment. I was telling him the latest developments with my MBC.

ME:  I needed to change treatment, so I a few months ago I went to Dana Farber for a second opinion.

FORMER PCP: Dana Farber? Is he any relation to Bill Farber?

ME: I don’t believe so…

In hindsight, I had a skewed opinion of doctors. My father inevitably referred to all doctors as quacks (although not to their faces). My mom, who died from inflammatory metastatic breast cancer in 1983, saw many doctors over the course of her two years of treatment. My impression was there was a language barrier with one of her doctors–she had great respect for all of them, but I don’t think she liked any of them.

Prior to becoming a cancer patient, I though you had to have clout to see the “best” doctors. I have found this is not the case. It may be true that some oncologists are heavily booked and that some clinicians don’t accept new patients, but you don’t have to be rich or important to see an outstanding doctor. I am fortunate–I have not had any insurance issues–I have been able to see the doctors I wanted to see.

Since I grew up in a small town, I though I would prefer a small-town doctor. I feared a big institution would be impersonal and potentially overwhelming.

Some years ago, I went for another second opinion at a different academic center. It definitely was not my cup of tea..stepping into the waiting area was like going to the United terminal at O’Hare after a 12-hour weather delay.

There were people everywhere–and even though it was a spacious room, it was jam packed. Rather than call patient names, each patient was assigned a number from an ATM-like contraption. When it was their to check in, patients were summoned by their numbers, using an automated intercom similar to the one  TJ Maxx  shoppers find at the checkout line: “Registrar Number Three! Registrar Number Three is now open! Number 674, please go to Registrar Number Three!”

But I have also been to two additional academic cancer centers with facilities that more closely resembled an upscale hotel lobby. I would never judge a practitioner solely based on his or her office space, but when you know you are going to be a regular customer, it is nice to go somewhere that doesn’t make you feel tense or claustrophobic.

Interestingly, I haven’t found any articles geared to patients explaining the difference between a community oncologist (either in private practice or part of a hospital network) and an academic center oncologist. I did find some written for the clinicians:

Advantages and Challenges of Working as a Clinician in an Academic Department of Medicine: Academic Clinicians’ Perspectives

Subspecialization in Community Oncology: Option or Necessity?

Systems Perspective: The Community Based Oncology Perspective

Private Oncologists Being Forced Out, Leaving Patients to Face Higher Bills

Choosing a care team is a decision that hinges on geography, insurance, disease complexities and personal preference. One size does not fit all. I really like  Dr. Larry Norton’s Seven Tips for Getting What You Need. (“If you don’t like your doctor, your doctor probably doesn’t like you.  Don’t stay with a physician with whom you’re not comfortable…”)

Most cancer patients are fiercely loyal to their medical teams–we don’t see some of our own family members as often as we see some of our doctors–it is devastating when an oncologist someone has seen for years on a regular basis retires or moves away. And of course, we always want to reinforce the validity of our own decisions.

We need to believe our individual  doctors are the best because we need them to be the best.

 

 

I wanted to help my family and friends understand what my appointment and treatment are like so I made this video. 

 

 

 

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I am sorry I didn’t beat cancer

Uzmay reflects on being a competitive person confronting a disease that cares nothing about personal attributes, her own evolving attitude toward a #metastatic breast cancer diagnosis and finally the realization that her voice and story can have a profound effect on others.

Left Boob Gone Rogue

Yep, sorry, my apologies, with a diagnosis of metastasis four months ago , I didn’t beat cancer.

Every one said, “You are going to beat it”, some said, “If anyone can, you can!!”. They cheered me on as I endured one treatment after another and I kept fighting “like a girl”. I was told I will kick cancer’s ass and will show cancer who is the boss. I rode the wave of positivity and determination. I believed that I will beat it too. I thrived on the fantasy of the cancer submitting to my will and strength.

Songs, inspirational quotes, memes, greeting cards and stories, all led to me to the one end point, “beating cancer”. Being very much a type A personality, I accepted the challenge, I said to myself “I will beat cancer”. Except for one open book exam, I have hardly failed at something in life. So…

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What Metastatic Breast Cancer Patients Wish Medical Oncologists Knew

Medical oncologist James Salwitz writes a blog called “Sunrise Rounds.”  

In a recent post, “Secrets of Cancer Survivors,” Dr. Salwitz offers 25 tips about “dealing with the dread disease.” He acknowledges that as someone who has never had cancer he isn’t qualified to pontificate about it–his intention is only to share what he has observed over his years of treating patients.

While I agree with most of Dr. Salwitz’s suggestions, it bothers me that he makes no distinction between someone being treated for early-stage disease and those who have advanced disease. It’s not as though people with Stage IV breast cancer could have prevented or survived the disease by adhering to these 25 points. I know many people who were model patients with supportive families and wonderful friends and adorable pets. They took excellent care of themselves–they hydrated, they exercised and they journaled. They were educated and proactive–I am pretty sure at least one of them could have given me a very sound second opinion.

These patients did “uncover every stone” just as Dr. Salwitz urges. But all of them died. All of them had such spirit and heart–many left behind young children–they tried their hardest. Maybe it did buy them a little more time, but ultimately they did not survive. There is no extra credit in metastatic breast cancer–no character witnesses to testify on our behalf. Molecular biology is heartless.

Much of what Dr. Salwitz says is common sense–be on time, bring a friend, don’t let cancer take over your life, educate yourself, ensure all of your medical providers are on the same page and so on. This may improve patients’ overall experiences but I doubt it will truly impact outcomes in the clinic. So much of that depends on subtype, prior treatment, comorbidities and, indeed, what type of cancer the person has. Metastatic testicular cancer is curable; metastatic breast cancer is not.

I can’t offer survival secrets. But I would like to give Dr. Salwitz and his cohorts some ideas on improving the patient experience–particularly as it relates to those dealing with metastatic breast cancer.

RELEASE TEST RESULTS PROMPTLY. When you have Stage IV breast cancer, you generally are scanned every four months to see if  a treatment is working. Some oncologists release test results as soon as the scans are read, others prefer to go over them with the patient. Waiting for results is awful–if you expect a delay (a holiday or some scans results will be delayed) please advise your patients.

Here’s another pro tip: When making a routine call, avoid the ambiguous and ominous message: “This is Dr. So and So’s office. Call us.”  HIPPA may preclude you from saying something like “Your blood work is fine,” but it may be possible to say something like “No big deal, call at your convenience.”

WATCH YOUR LANGUAGE. Shortly after my Stage IV diagnosis, my doctor said she was going to restage me. Great! Maybe I didn’t really have Stage IV breast cancer. But it turned out she just wanted to send me for scans to see if my treatment was working. Please clarify medical jargon.

HELP ME UNDERSTAND WHERE I FIT IN. When I was first diagnosed, I only knew I had Stage IV breast cancer–it was helpful to know I had a small volume of metastatic disease and that it was confined to my bones and that this was “good.”

Now, some years down the road, I want to know what treatments might be next for me–do I have many? Just a few? What is the range of AIs, oral chemos and IV chemos? Not everyone does, but I do like to think ahead.

HAPPY PATIENTS ARE INFORMED PATIENTS. The patient who is waiting and waiting in the aptly named waiting room will likely be less anxious if they know up front you are running behind. Or if the pharmacy is behind. Or if some emergency came up. Just sitting there like a bump on a log sucks.

WHAT IS NOTHING TO YOU IS SOMETHING TO ME. For years, my hospital used a CT contrast drink that required mixing with water and consumption the night before the exam. When it changed to a different type of contrast (no water added, consumed the day of the test) it was unsettling. I was used to my routine–the one thing I can control. And now it is different. No one explained the rationale behind the change–until I asked.

That wasn’t a huge deal–but other changes are. For example, one patient I know  was filled with anxiety after her oncologist’s office called to reschedule an appointment–it turned out the doctor had to participate in a  clinical trial conference call–nothing at all to do with her.

HIRE WISELY. Your front office staff, nurses and techs are a reflection of you. Would you ever tell a newly diagnosed patient “Gee, I’m having a really bad day…I can’t figure out how to install this toner cartridge in my printer”? Well, that’s what your receptionist told me–and I could readily see that her office equipment issue was worse than my chronic, progressive and ultimately fatal disease.

AUDIT YOUR PHONE LINES. Sometimes when I call my oncologist, the “good” phone person answers. What a relief–she is a long-time employee, very friendly and I know she will give the nurse a clear message. Other times, I get the “bad” phone person. Her greeting is both hostile and brief: “Cancer Center” is all she ever says but it clear that what she means is “Why must you patients continue to inconvenience ME?” She will take down the absolute minimum of information–usually just my phone number. This generally leads to further delays because the nurse will have to call me, listen to my issue, hang up so she can consult the oncologist and then call me back.

LISTEN AND LEARN. I  have noticed my oncologists’ notes often reflect who accompanied me to an appointment–but I have never been asked about this. Sometime I am not alone–but the person who is with me had to take a work call–or stay with her young kids out in the waiting room.

I have a friend who prefers to go to her appointments by herself. If she is getting chemo, she can let the nurses take care of her–she doesn’t have to worry about taking care of someone else. Similarly, she can be direct with her oncologist without fear of upsetting her companion.

 

QUIT IGNORING US. Go into an oncology clinic and try to find information and support services for metastatic breast cancer. You will find that most of the material is geared for early stage breast cancer–the American Cancer Society, a group that supplies publications on a wide variety of cancers, just gives us a page or two in its general “So, You’ve Got Breast Cancer, Sure Sucks to Be You” brochure. Note that 90% of those in the metastatic breast cancer ranks were previously treated for early stage breast cancer–therefore about 90% of the material in the general breast cancer brochure is irrelevant. Groups like MBCN, LBBC, YSC and the Metastatic Breast Cancer Network do offer brochures but patients generally have to seek these publications out on their own.

LET’S BE HONEST ABOUT THOSE TOUGH CANCERS. As someone with MBC, I really struggle during October–all those happy pink celebrations–usually for people with the curable form of the disease. What about people with pancreatic cancer–the majority of whom are dealing with metastatic disease? How about the lung cancer patients? Lung cancer is the single largest cause of cancer deaths. Not everyone with lung cancer smoked but that is the popular assumption and probably the reason we don’t see professional sports teams donning special gear to mark Lung Cancer Awareness Month.  Rather than ignoring the “difficult” cancers, why not give us equal time? Aren’t our stories worthy of sharing?

BusChancesPLEASE FORBID YOUR STAFF FROM SAYING THE BUS THING. Last year, I was upset to learn my disease progressed. A nurse attempted to cheer me up by invoking the dreaded bus phrase: “Well, you never know, you could get hit by a bus.” This only served to make me more upset. The number of people who die from MBC annually (40,000 in the US) FAR exceeds the number of pedestrians mowed down by buses and other vehicles (something like 4,300  in the US). So actually, I have a fairly slim chance of getting hit by a bus, but  a 98% certainty this disease will flatten me–although I don’t actually have a time frame for that.

INVEST IN PATIENT COMFORT. I visited one oncology office where the front desk looked like the bridge of the Starship Enterprise–very modern and gleaming. Meanwhile the waiting patients were crammed in a tiny vestibule with chairs that were probably salvaged from the Partridge Family’s garage. Same thing in the exam room–more crummy mismatched chairs and paper gowns.  Small things make a difference!

This isn’t a list of grievances–just things I think that could be better. (I’m sure I have overlooked a few.)  I have been fortunate to be under the care of gifted oncologists and I am grateful for their empathy and skill  and all the dedicated people that work with them . I hope my patient perspective is helpful!

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Metastatic Breast Cancer & Me: Just The Facts

 

 

I like reading other metastatic breast cancer patients’ blogs. It’s always, unsettling, however, if posts abruptly stop. I always wonder what happened–is the person still around? What is going on with them?

I am very much still around and nothing too extreme is going on. For those who don’t know me, here is a brief update.

HOW LONG HAVE YOU BEEN LIVING WITH MBC?  Eight years. I was diagnosed at age 43 in July 2009. I will be 51 at the end of 2016.

DID YOU HAVE A FAMILY HISTORY? Yes. My mom died from inflammatory metastatic breast cancer at age 53. Anyone with a family history should talk to their doctor to determine an appropriate screening schedule.

DID YOU HAVE EARLY STAGE BREAST CANCER THAT CAME BACK? No. I was metastatic from first diagnosis, aka a de novo presentation. This puts me in the minority–about 90 to 95% of those with Stage IV breast cancer were previously treated for early stage breast cancer. Given my mom’s history, our Ashkenazi Jewish background and other factors (not having children, etc.), I had a medium to high risk for developing breast cancer. I did not expect to be dealing with it in my 40s. We often think of breast cancer as an old lady’s disease–but younger people (and men) can get it.

DID YOU HAVE SYMPTOMS? No. Or at least not any that I recognized as such.  I had no pain. I had a hard spot on my breast–I think I did notice this but dismissed it as  it wasn’t overly obvious and did not bother me. (I didn’t perceive it as lump.) Although my cancer had spread to my spine when found, I did not have back pain. (Some cancer patients have pain and some don’t. Anyone with pain, shortness of breath, persistent cough, unexplained weight loss, or just a general feeling something is wrong–see your doctor!)

IS YOUR CANCER HEREDITARY? No. Despite my family history, genetic testing showed I am NOT a carrier of the BRCA1 or BRCA2 mutations. Being diagnosed with cancer prior to age 40 can signify a hereditary connection, but as of 2016, the answer for me is “No.”

WHAT SUBTYPE IS YOUR CANCER? I have the most common subtype: ER/PR positive and HER2 negative. This is sometimes referred to as “estrogen-receptor positive disease” meaning that the cancer uses estrogen to grow.

KOBZometa

Me getting a very routine Zometa infusion.

WHAT DRUGS HAVE YOU BEEN GIVEN? Tamoxifen (2009 to 2011); Femara (2012 to 2014); Faslodex (Jan 2015 to April 2015); Afinitor/Exemestane (May 2015 to August 2015). November 2015 to present: Xeldoa.  The last two drugs are oral chemo drugs. IV chemo is likely next, but hopefully not soon. Also: Ovarian suppression shots from 2009 to May 2012; Zometa and Xgeva (for bone strength)  at regular intervals to the present day.

HOW ABOUT SIDE EFFECTS? I have had little in the way of side effects. Fatigue would be the biggest one. I am fortunate–everyone’s experience is different.

DID YOU HAVE SURGERY? Yes. I had a left unilateral mastectomy in May 2010 with no reconstruction. Because I had a close margin, I had radiation from June 2010 to August 9, 2010.  Surgery is not standard of care for someone with metastatic disease. Because the cancer had already spread beyond my breast, removing it was a not a curative measure. The question of someone with MBC having a mastectomy remains controversial–my doctors stressed the choice was mine. Because my disease was stable and I was in overall good health, I was a candidate for surgery. Someone who is very frail or whose disease isn’t under control would likely not be offered surgery. Reconstruction wasn’t recommended. Also in the surgical category: I had an oopherectomy in 2012.  These procedures went fine–I didn’t have any complications.

 ANY LONGEVITY SECRETS? No. I am just “lucky.” I started out with a low-volume of bone-only disease. My disease has had a fairly slow tempo to date. I can’t take credit for those things–I was just fortunate my cancer responded to the drugs. I now have extensive bone mets  (again, I am glad to say they haven’t caused me pain). At the end of 2015, I learned I have liver mets–I have been fortunate to remain symptom-free. I did not have superior doctors, more powerful drugs or a better attitude than any other patient. I just was fortunate at the cellular level.

ANYTHING TO ADD? We are all statistics of one. My experience is just that–my experience.

 

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MBCN Supports Metastatic Breast Cancer Researchers With Total Of $100,000 In Awards

Very proud to support these two gifted researchers. It was great to meet Dr. Ewald in person at his Johns Hopkins lab and learn more about the work he and his team are doing.

MBCNbuzz

Editor’s Note:Here’s our press release announcing MBCN’s 2015 research grants.  Two weeks ago, en route to participate in an FDA public meeting, three members of MBCN’s board had the opportunity to meet with Dr. Ewald and his team at Johns Hopkins. We’ll share our impressions of that visit in our next installment. Stay tuned!

Patient Advocate Group Selects Johns Hopkins’ Dr. Andrew Ewald and Baylor’s Dr. Matthew Ellis as 2015 recipients of its Metastatic Breast Cancer Research Leadership Awards

 April 10, 2015NEW YORKThe Metastatic Breast Cancer Network (MBCN) announced the 2015 recipients of its Metastatic Breast Cancer Research Leadership Awards: Dr. Andrew Ewald, associate professor in the Departments of Cell Biology and Oncology at the Johns Hopkins University School of Medicine and Dr. Matthew Ellis, the director of the Lester and Sue Smith Breast Center at Baylor College of Medicine.

The Metastatic…

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philadelphia story

Kudos to the young people at LBBC’s Metastatic Breast Cancer Conference for organizing a strong visual to illustrate that 108 US people continue to die from Stage IV breast cancer every day. My MBCN friends are in the photo towards the end of the blog–there are 108 people in that photo.

putting the grrrrr in Grimes

act

The terrors of the early AIDS epidemic. The unknowing. The limited treatments. Inadequate funding. Living within a limited timeline. Dying before your time. All while watching your friends around you die, from the very disease that you fight. With over 40,000 deaths a year during the height of the AIDS epidemic, these numbers startled the country. Shook us to our core and demanded that we all do more.

Eerily, the same thing is still happening today. At the same rate, with over 40,000 women dying of metastatic breast cancer (stage IV) each year—averaging 108 deaths a day. Again, 108 women, just like me are dying every. single. day.

I was again  reminded of this disheartening statistic by researchers as I attended Living Beyond Breast Cancer (LBBC)’s yearly Metastatic Breast Cancer Conference in Philadelphia this past weekend.  An event that took every bit of my strength, as it is tough to do…

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RIP Laurie Becklund: Journalist Wanted Big Data to Tackle Metastatic Breast Cancer

I didn’t know Laurie, but we did exchange emails this past fall as she prepared her MedX talk. She was a gifted journalist and we are truly fortunate she used her talents as a reporter to explain the urgent need for change in metastatic breast cancer outcomes and propose a Big Data innovation.

MBCNbuzz

Laurie's 2013 MedX talk Laurie’s 2013 MedX talk

Journalist Laurie Becklund died on February 8, 2015 from metastatic breast cancer at age 66. On February 20, 2015, Laurie’s byline appeared in the Los Angeles Times for the last time.

In an Op-Ed piece called “As I Lay Dying, Laurie explained how she came to be one of 150,000 US people living with metastatic breast cancer and one of the 40,000 Americans this incurable disease will kill this year.

As Laurie noted in her opening sentence, metastatic breast cancer is the kind that kills people–no one dies from early-stage breast cancer. But as Laurie discovered, cancer can come back–even decades after someone successfully completes their treatment. In Laurie’s case, her breast cancer came back 13 years after her initial diagnosis. Scans revealed the cancer was now in her bones, liver, lungs and brain. When cancer spreads outside the breast, it is no longer curable–with…

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Submit Your Writing Assignment: Part 2 of the Memoir Webinar with Abigail Thomas

I could listen to Abigail Thomas read the phone book. She is so down to earth and her advice is so practical. Really enjoyed her talk; look forward to next week’s!

MBCNbuzz

Click on image to replay the webinar. Click on image to replay the webinar.

MBCN and SHARE had a terrific time with Abigail Thomas during  Part One of our Memoir Writing webinar. She is funny, warm and honest–what a pleasant distraction on a cold winter’s day.

You can listen to a recording of her talk here; Abigail’s presentation, including several of the poems she referenced, can be found here.

Abigail gave us an assignment for next week’s session. Write two page on one of the following topics:

  • 9 Things I Do Remember & 9 Things I Don’t Remember
  • It Takes Place in Water
  • It’s Not Funny (With “It’s not funny” being the second sentence.)
  • There Are Many Things I Miss
  • I’m Afraid of the Attic
  • Any Ten Years of Your Life (Using sentences that are only three words long).

Don't be shy! Send your two pages to cbenjamin@sharecancersupport.org Don’t be shy! Send your two pages to cbenjamin@sharecancersupport.org

Abigail has graciously agreed…

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Memoir Writing Webinar With Abigail Thomas This Month

I am looking forward to MBCN/SHARE’s memoir writing webinar next week.

Part One is Tuesday, February 17; Part Two follows on the next Tuesday, February 24, 2015. Both take place at from 1:30 to 2:30 PM EST. Register here: http://www.sharecancersupport.org/share-new/learn/programs/write_your_own_memoir/

Presenter Abigail Thomas has already given us a two-page “assignment”:

  1. Take an 10 years of your life.
  2. Reduce them to two pages.
  3. Each sentence should be only three words long.

Example: He was cute. I was clueless. It seemed right.

Thomas is famous for this exercise—read what she told Oprah’s readers here.

I know that some people don’t necessarily want to write a formal memoir but would still like to preserve some memories. Why not take a look at StoryCorps site?  It offers this list of questions to help get the conversation started. Here is a video that explains how you can interview someone to preserve their story.

Find more great questions here

Find more great questions here

Great Questions for Anyone

  • Who has been the most important person in your life? Can you tell me about him or her?
  • What was the happiest moment of your life? The saddest?
  • Who has been the biggest influence on your life? What lessons did that person teach you?
  • Who has been the kindest to you in your life?
  • What are the most important lessons you’ve learned in life?
  • What is your earliest memory?
  • What is your favorite memory of me?
  • Are there any funny stories your family tells about you that come to mind?
  • Are there any funny stories or memories or characters from your life that you want to tell me about?
  • What are you proudest of?
  • When in life have you felt most alone?
  • If you could hold on to one memory from your life forever, what would that be?
  • How has your life been different than what you’d imagined?
  • How would you like to be remembered?
  • Do you have any regrets?
  • What does your future hold?
  • What are your hopes for what the future holds for me? For my children?
  • If this was to be our very last conversation, is there anything you’d want to say to me
  • For your great great grandchildren listening to this years from now: is there any wisdom you’d want to pass on to them? What would you want them to know?
  • Is there anything that you’ve never told me but want to tell me now?
  • Is there something about me that you’ve always wanted to know but have never asked?

Source: StoryCorps.org

I look forward to MBCN/SHARE’s two-part webinar. Register here: Register here: http://www.sharecancersupport.org/share-new/learn/programs/write_your_own_memoir/

And, to conclude with a three-word sentence a la Abigail Lewis:

Do It Now!

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Cancer Gets the Ken Burns’ Treatment on PBS (And Why I Won’t Be Watching It)

Whenever I see filmmaker Ken Burns in the news, I marvel at his eternal boyishness. How can someone born during the Eisenhower administration look no older than 35? Could Burns be some of sort of latter-day Dorian Gray? Is there a film locked in his attic featuring his 61-year-old doppelgänger? Has he ever considered wearing a part in his hair?

A documentary devoted to all of these details is one that I would watch. The forthcoming “Cancer: The Emperor of All Maladies” is not — at least judging by the trailer.

Burns, as executive producer, gets his name above the title. Barak Goodman is the actual director. Naturally, because Burns’ name is well known, PBS and the film production company are leveraging that connection.

Burns’ mother died from metastatic breast cancer when he was 11. “There was never a time when I didn’t know my mother was sick,” he told an interviewer. Burns ascribes his mother’s death with influencing his career — his documentaries are rooted in the past, an attempt to breathe new life into those who are long gone.

Siddhartha Mukherjee’s popular book inspired the six-hour film airing on PBS in March 2015. The book is a “biography” of cancer from ancient Egypt to the present day. According to promotional materials, the PBS effort is three films in one: a historical documentary; an intimate vérité film; and a scientific and investigative report. Perhaps we will learn how many licks it takes to get to the Tootsie Roll center of a Tootsie Pop, too.

One of the hallmarks of a Ken Burns’ documentary is length: his series on baseball was 19 hours long, his portrait of the Roosevelts unfolded over 14 hours and his landmark Civil War effort clocked in at 11 hours. Yet Burns and Goodman propose to cover cancer’s biography — all 5,000 years of it — in six hours.

The series looks at cancer’s past, present and future. Mukherjee, who appears throughout the film, anchors the historical section — I’m sure that part will be riveting.

I’m dubious about the second segment, which takes viewers to the pediatric oncology ward at Johns Hopkins Kimmel Cancer Center in Baltimore as well as the Charleston Area Medical Center (CAMC) for some wide-ranging patient encounters.

This sounds like talking to some people from Los Angeles, Cedar Rapids, Tallahassee and New York City and assuming you know what life is like in Phoenix, Dallas, Detroit or Ogunquit, Maine. Even Ken Burns limited himself to one war (Civil), one sport (baseball) and one family (Roosevelt).

If I made a documentary about cancer there would be an entire segment devoted to explaining that all cancer is not alike and even one type of cancer can be quite complex depending on stage, subtype and other factors (early-stage breast cancer, for example is vastly different from metastatic breast cancer and ER/PR+ HER2- is a different kettle of fish than triple negative breast cancer). I hope that message comes across in “Cancer: The Emperor of All Maladies.” (I would also compile some of the dumbest things ever said to cancer patients—there would be no shortage of material! Think of the DVD extras!)

From the trailer, we know that the film will wrap up with the obligatory Big, Hopeful Finish. “You saved my life, Doctor!” exclaims one patient. Researchers use words such as “stunning” and “exhilarating” to describe the future of cancer research.

I want to believe that, I really do.

Unfortunately, progress has been painfully slow on some cancer fronts. Just ask someone with advanced pancreatic cancer. Readers will recall that Mukherjee’s book ends with a reflection on the evolution of cancer treatments, from ancient Egypt to 2050 AD. “[Now] give Atossa metastatic pancreatic cancer in 500 BC,” wrote Mukherjee. “Her prognosis is unlikely to change by more than a few months over 2,500 years.”

Part of the challenge with pancreatic cancer is that early detection is almost impossible. But all U.S. people should be alarmed at the anemic level of government-supported research.

When adjusted for inflation, the NIH budget is nearly 25 percent below its 2003 level. “ASCO is deeply concerned about continued stagnation of federal research funding,” ASCO immediate-past President Clifford A. Hudis, MD, FACP said. “All types of high-quality cancer research projects are at risk of being slowed, halted or simply not pursued. In addition to the challenges this presents to basic and translational research, NCI recently announced plans to cut the overall patient enrollment target for cancer clinical trials by 15 percent, after having already scaled back and consolidated its National Clinical Trials Network.”

Hudis previously sounded this alarm in his introduction to ASCO’s 2013 Clinical Cancer Advances report: “ Federal funding for cancer research has steadily eroded over the past decade, and only 15 percent of the ever-shrinking budget is actually spent on clinical trials. This dismal reality threatens the pace of progress against cancer and undermines our ability to address the continuing needs of our patients.”

It’s possible this Ken Burns-produced cancer film will inspire outraged viewers to rush to their laptops and fire off angry letters to their elected officials about the urgent need to restore NCI funding. But I doubt it.

I’m not feeling too optimistic about private funding. The “More Birthdays” people, to offer just one example, aren’t exactly tearing up the research pea patch either.

“When I joined the Board, funding for external research grants was 22% and when I left it was down to 10%,” former American Cancer Society President Vincent T. DeVita Jr., MD told MedPage Today. As MedPage reports, Devita Jr. called the situation “scandalous,” especially since ACS has presented itself to the grassroots public as a research organization while putting its money into other projects. (Including being among the sponsors of the PBS cancer film.)

Burns, Mukhurjee and Goodman have a fourth partner on this film: Laura Ziskin. Ziskin a film producer and a co-founder of Stand Up 2 Cancer, was diagnosed with lobular Stage 3 estrogen-receptor positive breast cancer in 2004.

In 2010, she learned her breast cancer had metastasized to her liver. There is no cure for metastatic breast cancer.

Ziskin died at age 61 in 2011. As the “Meet the Creators” section of the film site puts it, “She lived courageously with the disease that ultimately took her life in June 2011.”

My mom died from inflammatory metastatic breast cancer at age 53.

My mom died from inflammatory metastatic breast cancer at age 53.

Like Ken Burns’ mother, my mom also died from metastatic breast cancer. I was 17. Now I am almost 50 — and like my mom, I have metastatic breast cancer. I will die with or from this disease.

I want a happier ending.

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