Paul Roemer (LinkedIn, Twitter ) is speaking this Thursday at Health 2.0 in Bethesda. He’s a Twitter friend who has a lot in common with me: a cancer kicker with a business background, who now sees himself as an e-patient.

There’s one big difference: he went through his first major medical experience years before I touched CompuServe. He was empowered, engaged, proactive in his choice of physicians, self-activated from head to toe, and he did it with no template (e.g. “be an e-patient”) or online resources. You might say he was “e, with nothin’ but attitude and a phone book.”

As you read Paul’s story, think how different life is today – and how much of his attitude still applies today. For better or worse, Paul is a take-charge guy who was not going to let anyone else define what “health” or “healthcare” means: he was fully empowered and responsible for his decisions.

I learned I had testicular cancer way back in the dark ages of medicine—1985. I learned about it while on a consulting engagement in Amarillo, Texas. The entire project team was at a colleague’s apartment having dinner. The local news channel was running a short piece on how to detect the cancer. Someone suggested the television be turned off, stating the piece was inappropriate for a dinner party.

I knew the moment I heard the first part of the piece I had cancer. I walked out of her apartment to my sparsely furnished apartment—decorated in what appeared to be Early Conquistador including black plastic beaded and amber pressed glass lamps and sconces. Inside the single drawer of the rented press-board night stand was a well-worn thin copy of the Yellow Pages—when was the last time you actually needed to use the Yellow Pages? My immediate goal was to do what I had to do to remove the word cancer from any conversation having to do with me.

I scanned the ads and started calling any doctor whose ad listed cancer. I don’t remember how many calls I made, but I finally found a doctor at his home. The call was brief and to the point. I told him I had testicular cancer, described my reasoning, and listened to him tell me I was probably right. We met at his office the next morning and then called my parents. It was the first time I had ever used the word testicle in a sentence—how sheltered is that?

Within a few days I was scheduled at M.D. Anderson, Hopkins, and the Dallas Medical Center, where I was living. I didn’t want to go to Hopkins for treatment because I felt that had I stayed in Baltimore, my home town, my parents would treat me as though I was sick. I didn’t feel sick, and was not in the mood to act sick.

To take some of the pressure off, I arranged for the surgery such that my parents could not arrive until I was coming around. Along with my parents, both of the girls I was dating were sitting at my bedside when I awoke—so, at least I had that going for me.

At the time, there was no internet, no WebMD, no place to get up to speed on my illness, its treatment, or what to expect. I was on my own.

From what I remember I had three of the possible types of cancer. It had also spread to my right lung. I do remember that watching the monitor as they inserted the needle in my chest to biopsy the lump. Then it was my turn to play oncologist. Having not attended medical school I had to rely on my wits to understand my options.

The argument presented to me was as the cancer had spread from my testicle to my lung, it probably had made several stops along the way. The oncologist strongly suggested a radical lymph node dissection as the next course of action. My Speedo days would be over before Speedos were even invented.

I questioned his recommendation, asking why if the chemo was strong enough to kill the cancer in my lung it would not also be strong enough to kill all of the cancer cells in my body. He did not like my question, I did not like him. I found another oncologist who told me my question made sense—I hired him because he listened.

I did not like having to figure out my survival on my own, but I was going to take responsibility for as much of me as I could. A friend of mine from church put me in touch with a survivor. It was huge just being able to speak with someone who was a walking testimony that the treatment could work.

Everything I learned was word-of-mouth, hand-me-down information. Lots of rules—stay out of the sun; do not cut my finger nails, “pee in the ‘hat’ so we can make sure your kidneys have not shut down.” My nurses were not familiar with having someone come in with their own rules. I taped a sign to my door, “Do not wake me at 6 AM to give me a menu, I will not be ordering.” I had friends bring in food for me, figuring that if I was going to throw up I would at least take control of what I would vomit.

I bought a wig—I was the only one who didn’t think it looked like a wig. Despite orders to the contrary, I laid in the sun every day I felt good enough to walk to the pool.

Treatment. Three rounds of five days of in-patient with three types of chemo drugs, including Cys-platinum—guaranteed to ruin the week you are in treatment and most of the week after treatment. That drug, as good as it was at killing the cancer, had the gift of continuing to remind me it was in my system for days after being released.

Side-effects. Nobody said much about them until they snuck up on me. Overdosed on Reglan at an Amy Grant concert—lost control of all of my facial muscles. My tongue swelled to the point of making it difficult to breathe and I couldn’t keep my head erect. Fortunately, an IV of Benadryl fixed everything in minutes.

An injection in my sciatic nerve left me in pain for months. During one stay at the hospital, an infiltration of one of the drugs was so painful it almost made me forget how nauseating the chemo was.

After the second round of chemo I flew home to spend a week with my parents. My hair started to fall out during the flight. The next morning in the shower all of my hair came out. I remember my father telling me not to be upset. I told him that although we were now both bald, he lost his over several years and had had more time to adjust than I.

Halfway through the final round I unhooked my IV. It wasn’t logical, but I wanted to regain control of my life; no more nausea, no more tubes and told my nurses and girlfriend that I was going to Colorado. I never made it past the door of my room: my girlfriend grabbed the first nurse she saw and they talked some sense into me. And when it finally was time to check out, I had my girlfriend bring champagne and we drank it there in the room. Not what they were accustomed to seeing a patient do – but this was healthcare on my terms.

My last memory of the cancer was a couple of weeks after my final treatment. The CAT scan was clear and I was driving around the country visiting friends, having a new lease on life. At the house of one friend in Carolina I dove into the pool to cool down. The water felt good. I swam free-style, my wig passed me—I think it was doing the breast stroke.

It took years before I was able to walk back into a hospital without the medicinal smell bringing it all back. Things have changed for the better for patients in the last two decades. You can get information from survivors, information about the disease and its treatment options, learn about your doctor, the hospital, and what to expect. Additional information won’t make the chemo any better; it will make you think of the treatment as people doing things with you instead of to you.

The one thing I never overlooked was that the surgery and treatment worked.

I encourage you to take charge of whatever portion of your healing you can.

^{Paul Roemer has built several highly successful consulting organizations and has founded and managed three independent consulting firms since 1996. He is an executive who leverages leadership expertise in P&L management, international business development, process reengineering, customer relationships and strategy design/execution to drive dynamic gains in revenue, profit and performance for the enterprise in startup and mature environments.}

The health plan’s surgeons don’t have much experience or success with the repairs, so doing the right thing would require costly – but necessary – out-of-network surgery. They fought for years, researching and documenting, and won.

Yesterday Diane sent this update:

Great news about Hilary’s heart! She had an echocardiogram and follow-up cardiology appointment a couple of weeks ago – a year and three-quarters post cardiac surgery. Her cardiologist said that Hilary’s heart valve and the heart itself are both now “normal” and that she can expect the repair to last a very long time.

It may, indeed, last until she’s a little old lady. At that point, she may then have a bit of leakage such as other little old ladies her age might experience.

No guarantees, of course, in any of this, but we both felt enormous relief to hear that she’s likely looking at a very normal life and life span.

Congratulations to both of you!

Trisha Torrey wrote about the Engelmans yesterday on the About.com Empowered Patient blog, proposing that the difficulties the Engelmans faced constitute a new kind of “medical error,” and ought to be classified as such. I can’t disagree: in most of my speeches I say it’s a fundamental human right to know what your options are and pursue them.

I heard her speak last month at the National Library of Medicine’s e-Patient Conference. (Yes, they had an e-patient conference!) She’s a terrific speaker – and wait till you see what she’s created as her e-patient activism. (I took the liberty of boldfacing a couple of items.)

Everyone comes to their “e-patientism” through a unique and personal pathway.  As a 1950’s tv show once opened “There are 8 million stories in the naked city. This is just one.”

My e-patient story starts with another icon of classic television, Perry Mason.  Perry Mason inspired me to want to become an intrepid problem solver, truth seeker, and advocate.  That mission stayed with me through college at Harvard and law school at Georgetown.  I was a child welfare attorney and interned at the U.S. Department of Justice in the Criminal Division, Child Exploitation & Obscenity Section, specializing in applying law to the online environment, helping to capture online pedophiles.

However, I had a liver transplant due to autoimmune conditions between first and second years of law school, an experience that forever changed my perspective and path.  With several months in the hospital being evaluated for transplant, having my colon removed (ulcerative colitis), and then the transplant, I had a frontline view of the healthcare system – issues with insurance companies, inadequacy of patient materials, doctor-patient dynamics (good and bad), the role of nurses, medication error reduction, infection control (106 degree fever and reopening a wound – didn’t quite get that one right), medication adherence, pharmaceutical innovation, on and on.

Blessed to receive a liver — thousands do not — I felt called to ensure that other patients benefited from the great parts of our medical system and avoided the frustrating and downright dangerous parts.  If I could make navigating this process or going through a similar experience better for families and individuals, then I would be doing something worthwhile with this second chance at life.  It seemed a natural transition of my advocacy skills from children to patients.

Roll the clock forward 15 years and I have the privilege to be a “professional” patient advocate and have constructed an entire company, CryerHealth: Patient-Centric Solutions, around the idea that patient perspectives are what should drive healthcare. Serving as a catalyst and facilitator for companies to work with patient advocacy organizations and medical societies to co-create meaningful initiatives and systems innovation is highly rewarding.

Last October I began tweeting and then blogging under the name DCPatient (a pun – Donna Cryer and Washington DC) and found this fabulous cadre of E-patients. For the first time I felt, “These are my people.  This is the language I’ve been searching for to describe the power and potential of  personal patient advocacy.” My passion and energy were renewed and taken to an entirely new level.

My call to action now — Enlisting a cadre of fellow e-patients to not only improve navigation of the existing system but shape the system as policymakers on committees, government and hospital boards, and even running for office. I recently began my own 5 year term as a patient representative / consultant to the U.S. Food and Drug Administration, serving on advisory committees as a voting member and otherwise providing direct patient input into the drug approval process. Let me tell you, testifying at a hearing is great, but voting feels much more satisfying.

I am convinced that unless patients take their seats at the table when healthcare policy decisions are being made, we only have ourselves to blame if the system does not start to better reflect our needs and concerns.  We owe it to ourselves and all the patients and families coming behind us to step up and use whatever training and talents we have to advocate whether in our own doctor’s visit, an online community, or on a national stage.

Be well & Be vocal!

Donna Cryer/DCpatient



We often talk here about empowered patients’ struggles to get – or even create – the care they need. Usually we’re talking about it in a medical sense. But as far too many people know, sometimes there are other obstacles. Laurie Todd is, to me, an outstanding example of someone who wouldn’t take death for an answer – neither from doctors nor from their HMO. She says winning these battles is her calling – and she has made it her career.

My name is Laurie Todd. I am an e-patient, and I am the Insurance Warrior.

In March 2005, I was diagnosed with late-stage appendix cancer, rushed into surgery, and given months to live. I immediatley lost my business, my income, my savings. Finally, I was sent to the oncologist, who said, “There is no treatment for your disease. And, even if there were, they wouldn’t pay for it.”

That was a Friday. I spent the weekend at the computer. I pored over medical journals until late into the night. It didn’t take long to discover that there was a tried and proven treatment for my disease, involving another fourteen-hour surgery and heated intraperitoneal chemotherapry. This treatment could give me an 80% chance of no recurrence.

My HMO did not have this treatment available in their network. So, I wouldn’t be allowed to have it.

I found the world’s expert on appendiceal cancer — across the country in Washington, D.C. Then, I returned to Seattle to figure out how to make my insurer pay for it. I spent two months reading, studying, gathering proof. What I really needed was the finest lawyer money could buy. However, since I had no money, I had to turn myself into that lawyer.

Three months after receiving my twenty-three-page War Documents, my insurer called me, “We have decided to pay.” They paid it all. My expenses during 2005 were approximately $345,000. My share? Nine dollars.

I had won the treatment; now I had to undergo it. After my fourteen-hour abdominal surgery and heated intraperitoneal chemotherapy, I hit the jackpot of complications. I spent forty days in the hospital, wondering if I would ever get home. I returned to Seattle — in a wheelchair, too weak to brush my teeth — but free of cancer.

It wasn’t long before people started calling me, “We heard you had a great victory. My insurer won’t pay for my lifesaving treatment … can you help?”

As of today, I have won fifty-three insurance appeals, for lifesaving treatments costing between $100,000 and a half-million dollars. Many insurers, many conditions/diseases, all over the United States. All won in a week or less.

In 2007, with the backing of a major cancer research foundation, I published my first book, “Fight Your Health Insurer and Win: Secrets of the Insurance Warrior.” This book has sold thousands of copies, and has helped hundreds of patients to win their own insurance battles.

In May 2009, I published my second book, “The Sample Appeal: More Insurance Warrior Wisdom.”

I have addressed general audiences at public libraries and service clubs. I have spoken to groups of healthcare professionals, cancer patients and caregivers, social workers, and benefits administrators. In May 2009 I addressed an audience of two hundred doctors and patients at the Liver Symposium in Chicago.

Cancer came through my life like a tsunami, and swept everything away. I opened my heart to the experience, and found the way to survival. When others found me, I could not refuse to help them. And so, my previous life passed away, and a new profession found me. People look for that one thing that nobody else can do — their right livelihood. It took an advanced cancer, a healthcare system that thwarted me at every turn — an an open heart — for right livelihood to find me.

Cheers,

Laurie Todd
www.theinsurancewarrior.com

Cheryl Greene is third from the left in the banner at top of this blog. She’s a long-time friend of our founder “Doc Tom” Ferguson, a board member of the Society for Participatory Medicine, executive producer of DrGreene.com (AMA: “the pioneer physician web site on the Internet”), and oh yeah, wife of Alan Greene MD.  And a heck of an e-patient, starting ten years before I ever had a CAT scan.

This stuff matters. These are stories of real lives facing lethal threats. As you read this, try to immerse yourself in the experience of someone who tried for 15 years to get pregnant, gave birth, faced a magnificent and much-longed-for future, and was suddenly told she had months to live.

This is real. And now, like many e-patients, she’s paying it forward.

Cheryl has just passed a phenomenal milestone. Here’s her story, cross-posted from DrGreene.com last month.

___________

This September8, I went to my doctor for my annual physical. I’m very diligent about getting my regular checkup because I have a history…

On March 22, 1996 I was diagnosed with stage three inflammatory breast cancer and this doctor, my gynecologist, has been with me the entire time – she was my doctor even before the diagnosis, back when I was struggling with infertility and trying to have a baby. She was the very person who diagnosed the breast cancer. She is a phenomenal physician and a very trusted advisor, and now she is a friend.

And this year, my doctor, my friend, looked at my charts and my paperwork, then turned to me and said some of the most beautiful words I’ve ever heard: “We can now call you cured.”

My breast cancer is gone. Done. Over. Nonexistent. We don’t have to use words like “remission” or “no evidence of disease” or talk about a “probability of recurrence.” This cancer that almost took me away from my children and my husband is truly cured. And just as I remember that day in 1996 when this same woman told me I had a deadly form of breast cancer, I will forever remember the day she told me I was cured.

I want to tell my story publicly for a number of reasons.

• First, my diagnosis of breast cancer was one of the reasons Dr. Greene and I changed our lifestyles and dedicated ourselves to sharing health information via DrGreene.com.
• Second, my experience as a cancer patient taught me important lessons about how patients need to participate in their own healthcare.
• And third, because I want to spread the word that people can live through a fatal diagnosis, even when the odds seem overwhelming.

My doctor told me that when she talks to other women with breast cancer, she calls me her poster child. What I had was supposed to be fatal, and if I can beat that cancer, others can, too.

Getting the Diagnosis: All You Hear is “Cancer”

I tried for 15 years to get pregnant, and when I was told that we should prepare to welcome a baby boy, I was determined to do everything right. I was prepared for the challenges of breastfeeding, but it turns out that my son and I were the perfect nursing pair. He did a great job of latching on and drinking, and I did a great job of producing “liquid gold.”

Then I developed a breast infection. Many nursing women have them – painful, but no big deal. I felt a lump that seemed like a clogged milk duct. But when the infection went away, the lump stayed, so I went back to the doctor.

The doctor came in and examined me. My son, then 9 months, was on my lap, and she laid one hand on my breast. Then she said abruptly, “Ok, you can get up now,” and started ordering tests. Later she told me she knew what the lump was as soon as she touched me.

I was very lucky. From the time I had the breast infection to the time I had the definitive diagnosis was six weeks. Breast cancers in breastfeeding women are rarely diagnosed this quickly because the breasts are so lumpy when you’re nursing.

But when the surgeon came in and told me I had breast cancer and I had to stop nursing, all I heard was, “YOU HAVE TO STOP NURSING.” I didn’t listen to the details about how serious this cancer was.

When you’re diagnosed with something that’s really devastating, there’s only so much you can hear. For me it was that I couldn’t breastfeed any more. All I could think of was, “How will I feed my baby?”

A couple of months later, I sat in my oncologist’s office and received more bad news. He was talking about treatment and told me I had only months to live. But before he told me my prognosis, he told me, “YOU HAVE TO HAVE REALLY STRONG CHEMOTHERAPY AND YOU ARE GOING TO LOSE YOUR HAIR.” That’s all I heard.

If you are close to someone who has just received very tough news, she may not realize what the actual news is yet. One of the best gifts you can give this person, besides just being there, is to accompany her to the doctors’ offices and write down everything the doctors and nurses communicate. Then give the patient some time to digest the big news and schedule a quiet time to go over the other details. This is a very vital service a caregiver can provide for a patient in need.

Getting Treatment: How I Became an e-Patient

When I started treatment, my goal was to make sure the medical staff thought of me as the perfect patient. I was going to do exactly what they said to do and follow all the rules – and I was going to be happy about it.

The first six or seven months, that was the way I operated. I went through chemotherapy and a lumpectomy. At one point the team decided I should have a port implanted in my chest so the drugs could be administered without needles in the arm.

I preferred to undergo the surgery under conscious sedation to implant the port because I didn’t seem to recover as quickly when I was fully sedated for a surgery. The anesthesiologist was someone I knew, and we were talking before the surgery. Then they put the drape up between my face and the surgical field so I couldn’t see where they would be cutting. I was still very aware of what was going on even though I couldn’t see it or (theoretically) feel the surgery. I heard the anesthesiologist say, “Ok now – no whining.” I steeled myself, “I’m going to be good and I’m going to be strong and I’m not going to whine.”

But the surgery was not what I expected at all. During one part of the procedure, when the surgeon was using what seemed like a hammer and chisel to pound the port in place inside my chest, I didn’t think I could take it. I was trying so hard to be strong, but it was awful and I felt like passing out. But I didn’t whine.

After the procedure, I told the anesthesiologist how hard it had been. And his face contorted and turned white. “Why didn’t you tell me?” he said, upset. “It’s my job to make sure you’re comfortable!”

“But you said, no whining,” I replied.

I was shocked when he said, “But I was talking to one of the nurses.”

Light bulbs went off. Right then I realized that I was the only one in the room who had information about how I was feeling, and it was my job to communicate that. I needed to stop being a compliant, non-complaining patient. I needed to speak up and share the information about what was going on inside my body with the rest of the people who were working with me to try to fix it.

In the course of the next six to seven months, I completely changed how I interacted. I learned how to give myself a shot I had to take daily so I didn’t have to wait on a nurse or get an appointment. I worked with my doctor on a daily plan for my medication, which needed to be adjusted regularly when we were trying to figure out what would work. I had gotten to the place where I knew what I needed. My doctor was reviewing my suggestions, but I was making decisions. I credit that engaged, that empowered, behavior as one of the reasons I was cured.

Enduring the Journey, Finding the Cure

I started off with the strongest Western medicine available, and at the end of my treatment, I was in a very vulnerable position. The cancer was gone, but the first year after treatment has the highest risk of recurrence. And cancer that comes back during this time usually spreads very quickly and is very resistant to more treatment.

I decided I wanted to be as involved as I could in attacking this thing. I found about a trial at Stanford that the coordinators were having trouble finding participants that fit the critera. You had to have been diagnosed with stage three or stage four breast cancer, and you had to be done with treatment with no evidence of the disease. The hard truth is that they couldn’t find many eligible patients because there weren’t many of us who were surviving this disease. When I was first diagnosed Alan tried to find people online with my cancer, and he couldn’t find anybody. He just kept finding memorials for people.

So I enrolled in the FGN1 trial at Stanford. I knew I had a 50/50 chance at getting the drug, but either way, I was determined to do it. Either I got the drug, and perhaps got help, or I didn’t and hopefully helped others.

The trial was an 18-month chemotherapy treatment, but I knew right off that I was getting the actual drug and not a placebo because I had to be hospitalized because of the side effects. They adjusted my dose a couple of times because I was so sick with the side effects, and they actually asked me if I wanted to drop out. But I wound up completing the trial because I wanted to help find a treatment that would help more people than the conventional chemo.

After the trial, the doctors told me that of the six women at Stanford who were on the trial, several on the placebo had recurred and one had died. At that time the cancer had not come back in those of us who received the actual drug. I haven’t been able to track down any of the other women in the study, soI don’t have any long-term data. Unfortunately the side effects turned out to be too serious to take the drug to market, but I’m grateful I persevered and got the full treatment.

There’s no doubt that the chemotherapy is one of the major reasons I’m here to tell my story today, but I’m fully convinced that my mindset played just as significant a role. When I was diagnosed, I didn’t absorb their message that I was going to die. I heard what they were saying, but I was convinced that the fatal diagnosis didn’t really apply to me. At the same time, I can remember realizing that I needed to live every moment to the fullest.

______

Humans are capable of two diametrically opposed ideas at the same time. I remember one morning in particular waking up and feeling totally exhausted. I felt tired on the cellular level, and all I wanted to do was just turn over and go back to sleep. But I said to myself, “You may never feel better than you do right now, so get up and get dressed and go play with that baby.” I remember feeling like I didn’t really accept this diagnosis and that I was going to make it, yet coming to the conclusion that I needed to live every moment because they might not come again.

That combination really served me well. And the take home lesson for me was that it is really important to live today and not miss today. I really learned to take advantage of opportunities… to seize the day.

What are you doing today to live this day to the fullest?

Life after Breast Cancer

Although it was just a couple of weeks ago when my doctor looked me in the eye and called me cured of the breast cancer that had almost ended my life, I’ve actually considered myself free from cancer for quite some time. When I was diagnosed, Alan and I took a serious look at our lifestyles and our environment and made significant changes that last through today. We share many of our insights on the benefits of healthy living here on DrGreene.com, and we’ve come to embrace our good health and to enjoy our good days.

I fully believe that some of the healthiest people in the world are those who are living with a chronic disease and managing it well. Those of us who have gone through a life-changing threat to our existence have sought out information about the world we live in, the food we eat, the air we breathe… we want to do anything and everything we can to regain and maintain our health.

People with diabetes who watch what they’re eating and control their disease with diet and exercise are healthier than most disease-free folks who eat junk food and spend their evenings on the couch. People with asthma who avoid second-hand smoke are exposed to fewer toxins. We survivors of diseases just seem to be more aware of what keeps us healthy and what will make us sick because if we don’t pay attention, the repercussions could be very serious.

____________

Some days I’m really angry about what cancer stole from me. I was breastfeeding one day and two months later I’m in full menopause with hot flashes because of the chemotherapy. It was insult to injury because I hoped to have another child at that point. During my treatment I opted to do everything I could to keep my breasts because I fully believed I would nurse again.

But the anger about the cancer doesn’t come close to the happiness about the cure. I was diagnosed with stage three inflammatory breast cancer. The chances that I would survive were very, very small. But survive I did, and, as another cancer patient once said to me, “Today is a great day to be alive.”

This is one such story: it’s the e-patient awakening of a long-time personal friend of mine. Facing a painful medical crisis, she asked questions and carried out research that revealed options no one had told her about. By becoming an e-patient, she’s changed her future.

And what fascinates me, as we plan the new world of participatory medicine, is this: How does this awakening happen? What are the pivotal moments?

I met Elyse Chapman almost twenty years ago, on CompuServe’s Desktop Publishing Forum. In a very real sense, that was an online empowerment community: rather than taking the often-inadequate answers provided by software vendors, “we the people” banded together to talk about what WE needed to know.

A few years later Elyse and I met at a desktop publishing convention, where we cut costs: I shared a suite with Elyse and her husband Bruce. They lived near LA. Eight years ago they adopted their son Ben and four years later moved to Iowa.

Last August, Bruce was driving artwork to the printer at 6 a.m. for Elyse’s employer when over the hill came a pickup truck on the wrong side of the yellow line. He died instantly. Elyse is now sole support for herself and Ben.

Last month, experiencing extreme, out-of-the-ordinary cramps, she learned she had a large abdominal mass and would need a hysterectomy, major surgery that would require 6-7 weeks out of work. A strong woman (good Midwestern stock), she was willing to do whatever she needed to medically: she can handle it. The original finding was a 4″ mass, requiring open surgery since the docs said there was no way to tell whether they’d find cancer.

Elyse is familiar with my story and asked that fateful question faced by people with a critical diagnosis: “Where do I start?” She wanted to explore her options.

Fully supporting whatever her choice would be, I let her know about my own kidney surgery, in which a kidney with two large protruding tumors (attached to surrounding tissue) was removed through small slits, not the “open” nephrectomy that would have required 5-6 weeks recovery, like her proposed open hysterectomy. I asked if she’d like to explore such options.

While never once questioning her medical team, she agreed that would be good: not only is she sole support for her family, she’s a principal source of income for the small business that employs her.

Charlie Smith, M.D., is a member of our working group, and volunteered to talk to her. Charlie writes for the eDocAmerica blog, and he was “Doc Tom” Ferguson’s own physician, during the time when Tom was an e-patient himself, collecting extraordinary information that led to his outlasting his multiple myeloma prognosis by more than a decade.

As Elyse’s story unfolded in the next two weeks, I watched closely: it was my first opportunity to witness the birth of an e-patient, before my eyes. And as it unfolded, I experienced wonder and then joy at the process.

Later this week I’ll offer my thoughts. But first, here’s the post Charlie co-authored with Elyse on his blog. Please read and ask yourself, what’s unusual about this story? What happened here? What moments of realization occurred? What altered the outcome?

A Patient with a Uterine Mass:
The Case for Becoming an e-Patient

This article was co-authored by Elyse Chapman, who became an e-patient through the following process:

I recently became acquainted with a woman in Iowa, Elyse Chapman, who was concerned about her “fibroids”. Elyse was scheduled for a hysterectomy because of a very large, mass, probably a uterine fibroid, a benign but often problematic tumor of the smooth muscle fibers of the uterus. She had problems with excessive painful cramping, bladder pressure and a sensation of swelling and bloating in her abdomen.

A CT scan was ordered and showed a mass either on the ovary or uterus. The mass was so large that her doctors wanted to make sure that this was not a malignant tumor of the uterus or ovary. They had scheduled a total hysterectomy via exploratory laparotomy in 3 weeks and Dave was “consulting” with his online friends to see if anyone knew of a patient group with whom she could collaborate to see if there was an alternative to major surgery.

I volunteered to help. Shortly thereafter, I received an e-mail from Elyse and then gave her a call. I heard more details about her history, learned that she had lost her husband recently, and as a single parent, felt very shaky about the prospects of recovering from major surgery without help at home. She wondered why her doctors were so focused on performing a total hysterectomy and why she wouldn’t be a candidate for a laparoscopic approach. She also wondered if she really even needed to undergo surgery now, or could she safely wait and watch for a time.

Unable to determine for certain that an alternative approach was feasible in her case, I encouraged her, at the very least, to become more assertive about getting answers to her questions: If she wasn’t a candidate for laparoscopy, why not? I told her I’d do some further research about this and get back in touch with her. I looked this up on the internet and then sent her this e-mail:

I looked at some sites on laparoscopic hysterectomy. Here is one I thought was good:http://www.ohanlan.com/laparoscop.htm From what I can tell, it should be possible to remove even a large uterine mass via laparoscopy.Good luck getting an answer on this that makes sense to you. Let me know if I can help any further.

Elyse communicated directly with a nurse at the above site and it bolstered her belief that it may not be necessary to undergo a total abdominal hysterectomy. She communicated this to her doctors in Iowa who were still uncomfortable exploring alternative options. So, she sent me the following e-mail:

http://www.google.com/search?hl=en&q=fibroids+ultrasound&btnG=Google+Search&aq=0&oq=fibroids+ul

Charlie, have you heard of this — nuking the fibroid with ultrasound while using MRI to view and target the waves? Just learned of it today. Seems to me that U of I is wanting to just yank everything out even though there’s no proof that this growth is malignant. Sounds to my laywoman’s brain like at very worst there’s a 50-50 chance of malignancy, yet they do not want to do a biopsy for fear of rupturing something that might be ovarian and malignant, causing easy spread of malignant cells.

What I don’t understand is how anyone can determine if it’s malignant without a biopsy, but obviously someone knows how to do that, because links in the above results say the ultrasound procedure works well for non malignant fibroids, which means that somehow there’s a way to determine malignancy or no without too much fuss. U of I insists that there is no better imaging method than the CT scan I had, but at least some of the above links state that MRI is better. Huh?? Who is right? Is this a case of “we only know how to use a hammer, so everything we see must be a nail” or maybe “we’re financially invested in [name your imaging method of choice], so we’re going to use and promote that”? Thoughts, please?

Well, truthfully, I had not heard of this technique, so I did some additional research and found that the number of sites offering the procedure were limited, but sent these to her, with some additional links from the internet. In addition, this e-mail string reminded me that an increasing number of doctors and patients are opting for uterine artery embolization. I mentioned this, and she e-mailed me back that she was unable to find links for this procedure that I mentioned.

Here is my reply to her:

I should have used the “correct” term: uterine artery embolization.

This is another very reasonable alternative for you to consider, maybe even more realistic than the ultrasound approach.

After several more fax and phone exchanges between Elyse and the above physician in California, and phone exchanges with the physicians in Iowa, Elyse underwent an ultrasound examination that confirmed a large, single uterine fibroid about 6 or 7 cm in diameter. The Gynecologist/Oncologist in California felt that surgery was entirely optional at this point, noting that Elyse would likely experience shrinkage of the mass following menopause within a few years.

She is still in the process of finalizing her decision whether to proceed with a laparoscopic hysterectomy or take the “watch and wait” approach but is certain of one thing: she is NOT going to proceed with the scheduled total abdominal hysterectomy.

So, that is where we stand. But, what is the point? Well, the HUGE point is, Elyse is no longer content to blindly follow her doctor’s suggestions. Whereas they suggested she undergo a major surgical procedure, they didn’t even mention two significant new, less invasive procedures that might well be appropriate for her to consider, and did not give her clear information to consider the option of just watching and waiting.

The other point of the story is that a wealth of information is available on the web, but patients often need encouragement to seek it, and help interpreting it and applying it to their own situations. Peer support groups on line are one way to accomplish this and finding an interested, available physician to serve as an “e-patient advisor” is another way.

Either way, it is a good example of how patients are moving into the e-patient revolution and, through this process, the health care system is changing. In the meantime, join me in hoping Elyse soon finds the perfect solution for herself and has a great outcome.

So there you have it. Clearly, Elyse took matters into her own hands, even though she was prepared to do whatever her docs told her was necessary.

What do you see in this story? What happens in the awakening of an e-patient?

My thoughts (and a sequel) later this week. First, your turn: Discuss.

I am a 12-year leukemia survivor and very grateful to the ACOR community members who helped me numerous times along the way.

I have dedicated my life to creating community online and also, in a supplementary way, on radio. But my concept of community is a bit different. I believe it should not be seen as patients doing their own thing because doctors didn’t either listen to them or give them enough time – or lacked knowledge. I believe patients, caregivers AND specialists/researchers can easily be in ONE community together toward a common goal of better health for current patients AND future ones.

If you look at my little home-grown site, www.patientpower.info (with generous support and cooperation from the nation’s top medical centers AND their patients), we have brought together inspiring patients and renowned experts in a dialogue. In a few weeks we will add P2TV, much like CNN’s I-reports where patients will send in videos of their stories and also their questions. I am hopeful it will take off. And I am actively working to partner with community folks like Trusera and medhelp.org to form a union, in Health 2.0, of patients AND health care professionals who have devoted their lives to those same health concerns.

As an aside, I know the M.D. Anderson docs read patient comments on ACOR lists. They often know what a patient like me is saying BEFORE I come to see them. So the phantom community of patients and docs has been there a long time. Now I am working to make it all transparent.

Here are our current top 5 programs that illustrate patients and doctors working together:

1. A Team Approach to Treat Advanced Lung Cancer

2. Robotic Myomectomy: Treating Uterine Fibroids While Preserving Fertility

3. Advances in the Treatment of Bladder Cancer

4. Cell Phones & Brain Tumor: Should You Worry?

5. Cancer in Young Adults

(Note from Susannah: Take the time to listen to a few of these shows — they are a high-quality example of the long tail of podcasts. Big extra points from me for posting not only the full-length audio but also a PDF of the transcript.)

Keith turned his experience into a consumer call to action (and a business plan) by founding Trusera.com. Here is his e-patient story…

1) The term “e-patient” describes individuals who are equipped, enabled, empowered and engaged in their health and health care decisions. And naturally the “e” also stands for electronic. Would you identify as an e-patient? Is there another term you’d use?

By this definition I would definitely identify as an e-patient. I consider myself as part of a broad, accelerating movement to put more control of the consumer’s health experience in their hands using the power of technology.

The term I prefer, however, is “engaged health consumer.” Increasingly, consumers are taking charge of their health by finding health information that relates to their personal context in order to make personal health decisions. Today’s consumer has clear unmet health needs and wants to do something about them.

This is evidenced by your work Susannah at Pew Internet and studies such as Deloitte’s 2008 health consumer survey that showed that 41% of health consumers have medium to high engagement with the health system and another 28% rely more upon themselves than their doctors.

I believe we are at the beginning of a huge wave of this self-interested, highly involved consumer behavior, especially as baby boomers age. They have experienced huge, positive changes in their consumer lives that have given them more control of their life experience and expect the same when they face health and wellness issues.

For me, the term “patient” implies a more passive role for the consumer in their health journey. Webster’s defines a patient as: 1a) an individual waiting or under medical care and treatment; b) the recipient of any of various personal services; 2) one that is acted upon. I believe the ethos of the online health consumer today is quite different. He or she is actively seeking and stitching together fragmented pieces of data from their doctor, the Internet, and people who’ve been through it and trying to assemble them into a framework that relates to their personal context and preferences. Why should a consumer have more information about their next automobile purchase than they would about a health or wellness issue they are facing that requires action on their part?

Viewing the engaged health consumer as at the center of their customer experience, rather than a passive participant in the health value chain is a sea change in how the current US health system operates today. As I very much like your concept of equipped, enabled, empowered and engaged, perhaps we can split the difference and call them “e-health consumers”!

2) Were you always this engaged in your health care, or did your experience with Lyme disease trigger it?

Like many people, I was not highly engaged in my health care through my 20s. I became interested and engaged in prevention and wellness in my 30s when I became a parent of two young boys, and my experience with Lyme disease triggered my deeper involvement and taught me a valuable lesson: You must be the number one advocate for your own health and for others’ health if you are in a caregiver role.

No one else will play this role for you – not your primary physician or any other health professional. In my experience, I lacked access to the people, tools, and information that could have helped me get treatment sooner and that would have been more personalized to my health situation. As the director of quality at a leading Seattle-based hospital system said to me personally, the specialized U.S. medical system failed me. Each of the 11 doctors who failed to diagnose me played the role of a highly specific hammer, and I was a very targeted nail in their caseload. Being wrongly pressured to submit to brain surgery to address a mere symptom of my still-undiagnosed Lyme is one great example of this.

After I was diagnosed, I turned to the Internet and other people who had been through the experience. But I found information on the Internet to be either broad and generic expert information that I couldn’t apply to my personal situation or consumer-generated content whose relevance, credibility, and usefulness was hard to assess. I love scaling great consumer ideas and technologies, so I started to wonder whether my situation was unique.

3) Was there a light bulb moment for you when it comes to online engagement and health care? If there wasn’t just one moment, can you cite an example of how the internet played a crucial role in your care or the way you take care of someone else?

I had two light bulb moments. My first one was when I received a call from the wife of a friend while I was in the midst of debilitating physical pain and exhaustion after almost three months of suffering the symptoms of Lyme. This friend had heard through the grapevine that I was suffering facial paralysis, fatigue, and severe muscular and skeletal pain, and said she had had similar symptoms when she contracted Lyme in Connecticut in the 1980s. “Go to your doctor and get checked out for Lyme,” she said. The next week she was proved right by a wonderful rheumatologist. Her call changed my outcome and my life – just a week or two more and I would have been firmly ensconced in late-stage Lyme disease, a prospect that can have lifelong implications as a serious chronic illness.

I thought to myself: How could I have better accessed my personal network and the network of others whom I trusted over the past three months to leverage that collective experience? Also, how could crowd sourcing with even more people have helped accelerate my path to a proper diagnosis and help me make a decision about the proper treatment for me? Throughout the process, I kept wishing I knew five people in the Pacific Northwest who’d been through this and many more who’d tried different approaches to treatment.

My second light bulb moment came a few months later as I was getting back to health from the Lyme. While playing tennis, I tore two discs in my neck that were pressing against my spinal cord. I was told I was at risk of being paralyzed from the neck down if I stepped off a curb wrong, tripped on the stairs, or lifted my 3-year-old. An orthopedic surgeon scheduled emergency spine fusion surgery and gave me two hours to make a decision to proceed. Although the injury was real and I was in tremendous pain, this sounded a little too familiar to the craniotomy I was offered six months prior when I had Lyme. I decided to defer spine fusion surgery until I had more information and more control of my process.

I made it my full-time job to find the right treatment. I started to work my personal network and got connected to a friend of a friend who had flown to Germany and received an artificial disc replacement (ADR) that preserved his spine’s function. I researched this option through PubMed and connected online to others who’d been through the surgery, which was in FDA trials in the United States. I connected to doctors all over the world in considering this and other possible avenues. My motto was, “no stone left unturned.” Three months later I had successful ADR surgery in Germany with the leading spine surgeon in the world.

All the while I was thinking: Why is this so hard? And if it’s this hard for me, what’s it like for a single mother who’s supporting two kids by herself without the time and the resources to do the extensive research that I did?

4) You have an MBA and an impressive background as an executive at both Amazon.com and McCaw Cellular. But a quick search on your name turned up another past role, as a member of a Gilbert & Sullivan troupe (unless there is another Harvard-educated Keith Schorsch out there). First, did your business acumen help or hinder the way you dealt with your diagnosis and treatment? Second, did your theater experience (or any other personal talents or skills) come into play?

Thank you for your kind words. I do admire your research skills, Susannah! My business experience helped me a great deal. Visioning success is a big part of doing well in business and served me well at Amazon, McCaw/AT&T Wireless, and now, Trusera. To execute on my vision of getting back to health, I approached my health situation as a problem to solve and assumed that the right answer for me was out there. I just had to be willing to work hard and creatively to find the right path for me.

You put a smile on my face when you mentioned Gilbert & Sullivan. In college I evolved from a some-time journalist to a full-fledged theater producer, producing Shakespeare, G&S, and other productions. For me being a producer was about assembling the cast, crew, and resources to create something of value for the community.

I think my theater experience came into play with my diagnosis and treatment in that I employed a lot of creative and out-of-the-box thinking to solve my problem. I approached resources and assembled information with an open mind, and in doing so, discovered the benefits of integrating European, Eastern, and naturopathic medical treatments along with evidence-based Western medicine. This helped a great deal in getting back to health faster than I normally would have had I chosen to follow only Western medical protocols.

In the end, persistence, an inquiring mind, management skills, and a willingness to challenge conventional wisdom gave me the answers that were right for me and allowed me to be equipped, engaged, empowered, and engaged – in short, at the center of my health experience and not a mere participant or actor in a drama played on the “stage” of our health system.

My message is this: Don’t let health happen to you; take charge of your health and find the answers you need that fit your personal context, preferences, and needs.

(Read more e-patient stories.)

1) The term “e-patient” describes individuals who are equipped, enabled, empowered and engaged in their health and health care decisions. And naturally the e also stands for electronic. Would you identify as an e-patient? Is there another term you’d use?

No doubt about it, I am an e-patient. There are no handy-dandy pamphlets lying about a doctor’s office about my condition, Common Variable Immunodeficiency (CVID); it’s not well-known or fully understood. I rely on the internet to help me stay informed about my care. Not all physicians are receptive to patients doing their own research. One explained to me that he had spent years developing his skills as a diagnostician, only to have patients come in and tell him what they had before he even had a chance to examine them. So there’s a fine line between being an educated self-advocate and being the person who shuts down a relationship with another human who just may know what you need.

I depend on research and information gleaned through the internet: through NIH, through the US’s Immune Deficiency Foundation and the UK’s Primary Immunodeficiency Foundation; through pharmaceutical company sites; and even through individual blogs. I have learned the pros and cons of delivery methods for my gammaglobulin therapy; I have learned more about related autoimmune concerns. In return, I share a bit about my experience with CVID on my blog, as it may one day help someone out there who is struggling to come to grips with the diagnosis.

Additionally, when you receive a whopper of a diagnosis, you have to contemplate your existence within the world of health insurance. You now have a pre-existing condition, and if you lose your health insurance and don’t get picked up somewhere else after a certain period of time, you probably won’t get insured again, a devastating blow to anyone who relies on therapies which are otherwise unaffordable. Thanks to the internet, I was able to speedily discover the laws in my state about health coverage.

2) Were you always this engaged in your health care, or did your CVID diagnosis trigger it?

I have always been a researcher. As a mom, I have used those skills to investigate my children’s health issues online. But what kicked my internet health research efforts into high gear for me was an autoimmune condition, Idiopathic thrombocytopenic purpura (ITP), which landed me in the hospital for two weeks and which, I have since learned, is a common predecessor for CVID. One day I had platelets; the next day, I didn’t. And no one knew why. But I helped to put all the pieces together: family history (a member of my family has CVID), my own health history, and internet research. Although one doctor told me that he believed it highly unlikely for two family members to both have CVID, my internet research, coupled with my personal data, proved otherwise. Two immunologists later, I have been diagnosed, am in treatment, and am feeling better than I have in awhile!

3) In a previous stage of life you managed a prominent think tank’s website – how have you applied those skills and experiences to your current work? Was there anything else in your background that may have prepared you for what you are dealing with now?

I received a masters in Public Policy/Political Science from a program that emphasized operationalizing your strong quantitative and research abilities in real world situations. You were not going to spend your days locked up in the ivory tower of a higher education institution; you were going to go out into the world and make it work. My work experiences in education policy research gave me a solid foundation in analysis and advocacy, which are highly valuable skills when applied to health issues. For one thing, you have to be a very discerning consumer of the research on the web. You’ve got to know which sources are reliable and which are not, as erroneous information can sometimes be life-threatening. Some sites can tout data, saying something absurd like: “100% of the people surveyed said aloe juice is a wonder elixir.” When you find out 100% means one person interviewed out of a total pool of one person, well, that 100% doesn’t mean much, does it.

And once you know what you’ve got, you have to be your best advocate. For the past two years, I feel like I have become a professional patient. Because people with CVID are at higher risk for lymphoma, stomach cancer, lung and other issues, I must visit several different doctors each year and get scanned frequently. (I probably glow in the dark.) There was a time when I was a much more trusting patient. After being patronized and marginalized one too many times, I don’t accept that anymore: not for myself, and certainly not for my family. I am grateful for the doctors I have found who I feel are true partners in my continued health. And I will remain an advocate for my family’s health.

About 14 years ago, I moved away from policy work and started out life doing technical and content work on the internet. I still remember when my then-company was developing a site for health information, a place for people to meet others like themselves. I don’t think that site still exists, but I’ve never forgotten a lesson I learned from that and other sites I helped to develop and manage: community is powerful. You may not know people in your town or city who have your condition. And maybe you prefer a level of anonymity because of your condition. On the internet, you can find people who struggle as you do, and you don’t even have to tell them your real name. And the support is strong. I have seen people develop very real, long-term relationships with others, whether they are pregnant women who are all due to give birth during the same month or people battling cancer.

And reaching out via the internet is now an ingrained habit in our world. Even while managing a think-tank website, I had a lot of emails from strangers, strangers reaching out. They had read our research on health issues, or justice issues, or something else, and could I direct them to a place where they could find people who could help them? Like I said before, community is powerful, and there are a lot of people who are looking for their place to fit in and heal whatever ails them.

4) Was there a lightbulb moment for you when it comes to online engagement and health care? If there wasn’t just one moment, can you cite an example of how the internet played a crucial role in your care or the way you take care of your family?

As I mentioned before, my lightbulb moment came while I was healing from the ITP hospitalization. The medical people I knew were mystified as to why this would happen (hence why it is called an idiopathic condition.) Something in me just knew that it had to do with CVID: it just seemed like this was how it played out with my other family member; and my ITP didn’t respond much to steroids, but it did respond to IVIg, also known as gammaglobulin, the blood product used to treat CVID. So I began to research ITP and CVID, and I came to find out that people with CVID often *do* end up with related autoimmune issues, particularly ITP. Suddenly, it all made sense to me. After blood tests and scans were completed with two immunologists, voila! I had a diagnosis.

While there’s nothing happy about being diagnosed with something like CVID, there is a certain sense of relief you feel when you know what is happening to your body. Would I have figured this out without the internet? Certainly not as speedily as I did.

(If you liked this interview, check out the interviews of the Stirrup Queen and Amy Tenderich.)

Hearing her speak at Health 2.0 was a highlight of the conference for me and she just co-authored a book, so I wanted to bring her over to our page and ask a few questions about how she came to be such a kick-ass e-patient.

1) The term “e-patient” describes individuals who are equipped, enabled, empowered and engaged in their health and health care decisions. And naturally the e also stands for electronic. Would you identify as an e-patient? Is there another term you’d prefer?

I like all the e’s you mention – although “equipped” really depends on how good our health insurance is. Many PWDs (politically correct term for people with diabetes) have a real struggle to get coverage for insulin pumps, supplies, and testing devices – in particular new continuous glucose monitors, which can be a godsend to patients with volatile blood sugars.

Meanwhile, the Internet has given us patients a chance to come together to share experiences, practical tips, and our feelings. And it’s also given us a collective voice we never had before. With free access to all sorts of medical information, patients like me can drive our own care for the first time in history, by asking the right questions and demanding the latest and greatest treatments.

2) Were you always this engaged in your health care, or did your diabetes diagnosis trigger it?

Nope, I was never very engaged at all – except when I had that fight with my health insurance over paying the bills for my second C-section (I’ve had three). But my diagnosis with Type 1 diabetes changed everything. It came as quite a shock, and I realized that it was up to me to be my own best advocate and learn how to navigate the American healthcare system. I’m still learning every day, because it’s incredibly complicated.

3) You have a background in journalism and communications – how have you applied those skills & experiences to your current work? Was there anything else in your background that may have prepared you for your new role?

My husband says being a blogger is simply “my calling.” I’m a trained journalist with a master’s degree in communication studies, so that helps. But the beauty of the blog is that it’s so personal and free-wheeling. If I feel like posting a joke or a poem, I can do that anytime. Meanwhile I take my reporting role quite seriously, investigating new products and advancements in diabetes care, and interviewing all sorts of celebrities and luminaries in the field.

What else helps?

Type A personality.
Slightly neurotic.
Quirky sense of humor.
Classic over-achiever.

All of these traits are quite conducive to dealing with Type 1 diabetes, which is a very high-self-maintenance disease.

One of my favorite parts of the article was an explanation of this alphabet soup:

I am Tertia, I am 35 yrs old, dh is 30, TTC 4 yrs, dx = PCOS, stage II endo, irregular AF and I don’t O on my own. 3 x injectible IUI’s, all BFN. IVF #1 = cancelled due to falling E2’s. IVF #2, zero fert, rescue ICSI, BFN. IVF#3 = BFP, but ectopic, 3 x FET’s = BFN, IVF #4 = BFP, but MC 8w3d due to T21, IVF #5 = BFP, twins, loss of one at 21w, the other born 25w6d, died after 10 days in NICU.

If you squint this could be the sig line for an ACOR subscriber or other e-patient community member.

Another favorite outcome of reading the article was my reconnection with Melissa, creator of the blog Stirrup Queens and Sperm Palace Jesters, whom I met standing in the check-out line at Peggy Orenstein’s reading of Waiting for Daisy last year in DC. Melissa was kind enough to answer a few questions about being an e-patient, evaluating treatment choices, and combating stereotypes.

1) The term “e-patient” describes individuals who are equipped, enabled, empowered and engaged in their health and health care decisions. And naturally the e also stands for electronic. Would you identify as an e-patient?

Absolutely. I think the Internet has made it easier to be a strong self-advocate. All the talking that is not taking place in the waiting rooms is taking place on blogs and bulletin boards and people are able to look at another person’s experience, search for similarities with their own, and bring questions back to their doctor to help move along their treatments or get a diagnosis.

2) Were you always this engaged in your health care, or did infertility trigger it?

I’ve always been the person who has waited and waited to make an appointment so infertility definitely was the first time I took an active role in working towards a solution to a medical problem. I think I also just went along with what doctors told me prior to infertility. But the emotions that emerged from not being able to conceive drove me to become more of an active participant. I couldn’t stand waiting anymore and there is so much waiting inherent in a cycle.

3) In your manifesto, you write about how previous generations didn’t have many choices and our generation may have too many. Can you talk a bit about the internet’s impact on that situation?

I think you read so many stories that it brings out the what ifs and makes it difficult to stop–to stop treatments, to stop trying one solution or another. The drive to stop (and I think it can be healthier sometimes to stop than to continue) has to come internally because you can always find the next thing to try or the person who went through 14 IVF cycles and the 15th worked.

Having choices is definitely a good thing and I’m glad the technology exists. But it’s hard to walk away or to know which path to choose. Some of it is chosen by the doctor, but sometimes, the decision is left in the hands of the patient.

4) In Miller’s article, she writes about how infertility was a “silent disorder” and went on to talk about how this generation is no longer silent – do you agree? Has the internet had an impact on this “coming out” process? Related to that, have you taken inspiration or learned techniques from other formerly “silent” communities?

If you had asked me this question 2 years ago, I would have said that our generation is far from silent. But now, 2 years down the road, I can see the huge difference between speaking about it online and speaking about it face-to-face. The Internet makes discussion easy and it can be a misleading barometer of how open people are in the face-to-face world.

I think my generation is more “out”–that there are simply more of us that are willing to speak about it frankly and openly vs. my parent’s generation. Which is not to say that everyone is open or that it is no longer a silent community. I think we’re doing a good job connecting within the community and talking within the community and building in-roads within the community. And that is the first step. The next step is taking it outside the community, tearing down the stereotypes that are often presented in the media, having frank discussions in the same way we now do about other diseases that were whispered about years ago.