Tag Archive for: cancer patient story

A Patient Profile: My Aunt Jan

In early March 2020, just days before the world shut down, my mother stepped out of her sister’s Hospice room. My mother, the oldest of three, and her other sister, the youngest of three, had spent the last couple weeks by their middle sister’s side as she used every last ounce of strength she had to fight the cancer that had so deeply taken hold of her body. That day in March, though, my mother left early so she could meet me and my three children to go shoe shopping. She told her sister goodbye and explained she was going to spend some time with her grandchildren. She’d barely left the parking lot when her youngest sister called. A few moments after my mother had left the room, my aunt breathed her last breath.

My Aunt Jan, at 72, was too young, too healthy, and too disciplined to die from cancer. She had devoted much of her life to staying physically fit and consuming only the healthiest diet. She ate organic foods long before there were grocery stores selling them. She belonged to co-ops and sought out health food stores and juiced her vegetables when most people had never heard of those things. The rest of us were enjoying the processed food revolution that came about in the 1980s while Jan was biking to the health food store to get some bulk, organic grains. She stayed lean her entire life and enjoyed showing off her muscles. Her favorite way to spend time with anyone was by taking long walks, preferably on the beach on Sanibel Island, Florida, where I grew up and where she was able to retire. She was a music professor. A PhD. She was widely respected in her field for her knowledge, her expertise, and her own talents at the piano. She was extremely passionate about practicing the piano. She never missed practicing. She loved the classical composers: Bach, Beethoven, and Chopin. She knew them all. She taught them all. She played them all. She was so excited about classical music that I am sure her students couldn’t help but pick up some of that enthusiasm just by being in the room with her.

Jan never married or had kids. She had pets. First a dog named Bear who I think she mourned until the day she died. Later she had cats who found their way into her life in a variety of ways. She enjoyed their company, and they never complained when she practiced the piano for hours at a time, as my brother and I had as kids when she lived with us for a short time. Her practice interfered with our afternoon cartoons, and we let her know it, but she never relented. Practicing took priority over her niece and nephew. Practicing took priority over everything. I imagine it was her go-to escape mechanism. It must have been her therapy. She would have needed an outlet as the middle child in her family. She absolutely had middle child syndrome. She often recalled how my mother, the oldest, got to go out of state for college, while she got stuck going in state at the local school. And, of course, she and my mother both had stories about how their youngest sister, the baby of the family by a good seven years, got to do whatever she pleased. All families have similar stories, but Jan, I think, really felt the burden of being a middle child. My grandmother was not the most supportive of personalities and could be quite soul crushing when she put her mind to it, and she put her mind to it a lot. When my mother graduated from law school as a single mom with two kids in toe, my grandmother told her, “Well, we didn’t think you could do it.” She had similar zingers for all her daughters (and her granddaughter) for just about every important life event. None of us was unscathed, and Jan came out of that incredibly stubborn and with an insatiable drive to achieve, to succeed, and to prove herself. She did all those things, but I don’t think they were ever enough. I’m not sure anything ever would have been enough.

When Jan finally retired to Sanibel, which had been one of her life goals, she didn’t really retire. She began playing the organ and became involved in the music program at church. She wrote articles for the local paper, she biked all over the island, she walked the beach, she continued to teach college classes online. She just kept on achieving and never slowed down until things came to a screeching halt. Our first indication came when she had to go to the emergency room. It was then we found out that she was sick. Really sick. She had known for a while but hadn’t told any of us. She had been diagnosed with cancer — uterine we think, but it was never really made clear — about a year prior, and she ignored the recommended treatment. Instead, she sought alternative healing. It didn’t work, and she finally told her sisters what was going on and agreed to chemotherapy. But that is all she agreed to.

Even though I had been writing for Patient Empowerment Network (PEN) for several years and knew about the resources they offered, she was not interested. She was not interested in the information I could share with her about the latest studies and research. She was not interested in the many programs PEN has that help guide patients and their care partners through the process of diagnosis and treatment and the best ways to be an empowered patient. She was so stubborn. She had done things her own way her entire life and been pretty successful, so she was going to do cancer her way, too. I can’t say as I blame her. She had only always relied on herself, and she really believed that she had done all the things to set herself up to beat cancer her way. On paper she really had. Fit, healthy, ideal weight, superfoods, no processed foods. She did all the things. The only thing she didn’t do was embrace the resources she would need to become an empowered patient and to partner with caregivers to advocate on her behalf when necessary. She tried to go it alone, but she didn’t have to. PEN had all the resources she needed.

Had she embraced an organization like PEN, it’s impossible to say if her outcome would have been different. Some people just don’t survive cancer no matter what the circumstances, and Jan’s circumstances weren’t great. Not only had she delayed treatment, but there was poor communication among doctors, a botched surgery, and a generic treatment plan that didn’t seem to be tailored to her or her cancer. The treatment didn’t work and a lot of trips to the emergency room later she found herself in Hospice with the “thoughts and prayers” of her doctor sent via his nurse. Even in Hospice, barely eating, barely awake, I could tell she was still determined to beat the cancer. She just couldn’t seem to accept that it had been stronger than she. Looking back, I still wish she had decided to access the many resources available, either through PEN or another organization, but I do also see why she felt the need to rely only on herself.

Now, more than two years later, my mother has cancer. Lung cancer. Adeno carcinoma. It’s advanced, but very treatable and we are focusing on the very treatable portion of the diagnosis. A lung cancer diagnosis isn’t the death sentence that it was in 1992 when her father died from it. I’m very thankful about that. In a couple days from my writing this, I will go with her to her first treatment at the research hospital where my aunt refused to get treatment. I may still be a little in shock from her diagnosis, but I have already been comforted by the knowledge I’ve gained over the past several years while writing for PEN. My mom and I have already had discussions about some of the treatments I’ve written about, and she too seems to be comforted in all that she’s learned through PEN. She’s very supportive and a top-notch proofreader who knows I love to submit clean copy, so she’s read everything I’ve written at least once. She also took a dive into the PEN website on her own and found the section that tells you the questions to ask your care team. We’ve both learned so much through PEN that we feel pretty prepared to face this. I mean, nobody wants to get cancer. Nobody wants to go through chemotherapy, so we are overwhelmed and scared, for sure, but mostly we feel empowered. As we embark on this journey, we know that she, the patient, and I, the care partner, don’t have to figure it all out on our own. We’ve got a community of support at our fingertips. And that is the power of PEN.

Myeloma Patient Profile: Sharing My Cancer Journey with My Daughter

Part 1

Myeloma Patient Profile: Sharing My Cancer Journey with My Daughter Part I from Patient Empowerment Network on Vimeo.

In this part one of three, Lori Sackett shares the journey of her multiple myeloma. She explains some of the symptoms she was facing before diagnosis to having to advocate to receive next-generation sequencing testing.

Part 2

Myeloma Patient Profile: Sharing My Cancer Journey with My Daughter Part II from Patient Empowerment Network on Vimeo.

 In this segment of Lori’s story, Lori and her daughter discuss the importance of seeing a myeloma specialist, having a good support network, and the role her daughter played in Lori’s care.

Part 3

Myeloma Patient Profile: Sharing My Cancer Journey with My Daughter Part III from Patient Empowerment Network on Vimeo.

Lori and her daughter share their biggest takeaways and pieces of advice for other newly diagnosed myeloma patients and their care parters/advocates.

Myeloma patient, Lori’s advice:

  1. Insist on seeing a myeloma specialist
  2. Take care of yourself physically and emotionally
  3. Look for people/support and allow them to help you
  4. Live for now

Myeloma care partner and advocate, Carleigh’s advice:

  1. During every appointment have at least one note taker
  2. Ask for a hard copy or print out of everything
  3. Create a way to stay organized
  4. Keep a list of questions
  5. Have a mindset of persistence and perseverance, and to maintain hope

Patient Profile: Alexis Chase, PhD

Patient Profile

Alexis Chase, PhD

“To be empowered you have to be open, to want to do it, and to accept where you are.” – Dr. Alexis Chase, An MPN Empowered Patient

Dr. Alexis Chase has had a pretty interesting life, but she doesn’t think that makes her unique. She says she thinks all women have interesting lives. Born congenitally blind in her right eye she was given the name Alexis Elizabeth Lucia Chase. “I’m very proud of my name,” she says explaining the origin. Alexis was the name of a doll her mother had as a girl, and it means protector of mankind. Elizabeth is a family name, and Lucia represents Saint Lucia, the patron saint of the blind. Her mother was a nurse and her father, who was the first to recognize she had a vision issue, had a degree in biology. She was very close with her parents who instilled in her a strong foundation in her Roman Catholic faith. While she was born in Connecticut, she spent most of her adult life in Georgia as a divorced mother who built a successful 27-year career in the prison corrections system. She worked her way up to warden and earned two PhDs, one in religious counseling and one in criminal justice and corrections. After her retirement she became an international advocate and consultant of gender and women’s rights issues that include vocational training, post-incarceration reintegration, and female prisoners with children. She has travelled as far as Afghanistan in her advocacy work, and she is also the proud nana to a cat named Nathan Edgar Chase. She’s done a lot, and much of what she’s accomplished, she’s done while living with cancer.

The first time she was diagnosed with cancer was in 1976. She was in the first trimester of a high-risk pregnancy when she was diagnosed with ovarian cancer. Her doctors thought it would be best to terminate the pregnancy, but she refused. She was determined to have the baby, her daughter, and as soon as she was born, Dr. Chase began treatment for her cancer, opting for an experimental drug that she says saved her life.

At the time, her parents, her desire to live for her daughter, and her strong faith gave her the support she needed. “They were right there with me,” she says of her parents who she is grateful to for her faith. “It’s my great equalizer. My rope of hope,” she says and adds that she can pull on her faith anytime and in any place. “You’ve got to believe in something greater than yourself because definitely we’re not it,” she says.

She’s had no recurrence of the ovarian cancer, but in 1996, during a regular wellness checkup, she was diagnosed with myeloproliferative neoplasms (MPNs), a group of blood cancers that affect the function of bone marrow and can cause a number of complications. In Dr. Chase’s case her MPNs includes iron deficiency, anemia, diseases of the blood and blood forming organs, and hypothyroidism. MPNs are chronic conditions that can transform into another blood cancer and can affect people at any age but are more common in older adults. MPNs are also progressive. Dr. Chase had no symptoms for the first four years after her diagnosis, and wondered if she’d been misdiagnosed, but in 2000 she says she just started to feel like something wasn’t right and that’s when her blood counts started to change. She began taking medication, but in 2020 it stopped working and her cancer team worked to find other medications and therapies to treat her.

MPNs are rare and she doesn’t know anyone else with the same diagnosis, but she says she has an incredible support network through her daughter, her friends that are like family, her church, and her cancer team. “They take great care of me,” she says, but she also takes great care of herself. In fact, she’s very meticulous about taking care of herself. She carefully takes her medications, and she makes herself a priority. She focuses a lot on her mental health and she stresses the importance of mental health for all cancer patients. She says she finds three ways to laugh at herself every day and she chooses six words every day that represent how she’s doing and to help her feel empowered. A recent example, “I feel surrounded by grace today”. Also, part of her self-care is taking the time to listen to calming and soothing sounds and inspirational messages and quotes.

She says it’s a blessing to have the cancer she has because she is able to handle it and it makes her take time to smell the roses. She’s handled it so well that during her career as a prison warden she never let on that she was sick. She managed to schedule her appointments around her work so no one would know. She didn’t want her illness to affect her career.

Always an empowered patient, she’s been known to walk out of a doctor’s office when a situation doesn’t feel right. “It’s important for people to feel like they are being heard and more importantly that they are being listened to.” She says “It’s also important to know what’s going on with your care. You know your body better than anybody.” Dr. Chase likes the Patient Empowerment Network (PEN) because of the resources it provides to help others feel empowered in their own care. “I found PEN and love that I can access it anytime,” she says. She feels it’s important for patients to take charge of their own care plans. “To be empowered you have to be open, to want to do it, and to accept where you are,” she says. Her recommendation to other patients is to read, and comprehend, everything they can about their illness. “If you don’t understand it, you need to have someone explain it to you,” she says and also recommends keeping a journal. “We have to have something tangible. We can’t remember everything.”

While she continues to accomplish a great deal while living with cancer, it’s not always easy. “The chronic cancer fatigue, it will get me. I fight it because I feel like once I give in it would overtake me,” she says. She does experience shortness of breath and plans her days around her energy level. “It slows me down, but I don’t let it stop me. I push myself because I know the next day or the next day I won’t be able to.” Along with continuing her consulting and advocacy work, Dr. Chase loves to travel and hopes to go to Turkey to see the Virgin Mary’s house. “You never know what God has laid out for you,” she says. “I’m still here. I’ve been symptomatic for 20 years and I’m still here.”


Read more patient stories here.

The Power of a Gift

It sounds silly to think about stuffed animals—as a then-24-year-old—or anything really giving much comfort as chemotherapy drugs flowed through my veins, but as I have come to realize over two relapses is that the gesture matters. It is as simple as that.

Whether it was my first time receiving chemotherapy or my first relapse, it gave me hope knowing that people, even strangers, cared about my well-being. By the third time around, I was barely hanging on. Chemotherapy and radiation had drained me. I had showed up to the hospital looking and feeling like death.

My “Birth” Day

I call it my absolute worst and best day: Day 0, when I received my CAR T-cells in March 2019. It was the worst, because the two prior days of pre-conditioning chemotherapy had left me in a terrible state. Getting out of bed that morning, I had zero appetite, zero energy, and zero hope. I remember feeling so mentally and physically exhausted that I could barely stay standing while checking in for admission.

Upon being admitted, however, I noticed a stuffed green grocery bag tied at the handles. A nurse had placed the bag in my room, but rather than it be a part of an official hospital welcome, it instead came from a former patient. Soon, I was preoccupied with uncovering all the thoughtful gifts left by this stranger, while reading the hopeful note about how she had been in my shoes one year prior and was well again. What an inspiration this became!

I felt myself starting to regain strength. Then when the mutant T-cells, which had been re-engineered in a lab in California to attack my cancer cells, were being infused back into me, it was literally giving me a new life. On the outside, it was entirely uneventful—think of a typical blood infusion or draw. There was also a medical student who stayed to observe and chat with me through it, and it was that distraction with the sweet care package that allowed me to see that life would keep going. I would keep going.

Paying the Kindness Forward

Such an experience is what motivated me to start my own nonprofit and pay forward the kindness that I had received. (The next hardest moment was on my birthday a few days later, when the side effects of those T-cells landed me in the ICU for two days. What a way to celebrate, huh?)

In fact, completing graduate school during a global pandemic, while founding a nonprofit that helps others affected by cancer have become my greatest accomplishments since my diagnosis. Kits to Heart distributes thoughtfully designed, curated cancer care kits at hospitals and cancer centers in the Baltimore/Washington Metro Area community, as well as ships directly to patients nationwide. I have used my experiences and interactions with patients and social workers to pack the kits with informational resources and comforting products compatible with various cancer treatments. Just like receiving a care package from a survivor gave me hope and inspiration to pay it forward, we can inspire hope at the most difficult moments of treatments.

After Treatments

After undergoing more than anyone should ever have to, life is undoubtedly different. I go on more walks and hikes, for example. I have always enjoyed walking and taking in my surroundings, especially while abroad—but being on the verge of death multiple times tends to change your perspective on simple things like being able to take a leisurely stroll.

I also find joy by giving joy, especially to others affected by cancer. The very act of giving kindness reminds me that I am alive and reinforces the immense gratitude I have. From the scientists who believed in our own immune systems and pursued the research that resulted in CAR T-cell therapy today, to my resilient caregivers, I am thankful.

Yet, not everyone is fortunate enough to have strong support systems, let alone a ride to and from their cancer treatments. It is why I strongly advocate for giving joy in any way that you can when a loved one is diagnosed. Cancer is a lonely enough journey, full of anxiety and uncertainty. It hurts when friends or relatives stay silent during such a tough period. But I get it—given the circumstances, some simply have no idea how to help, while hospitals are not able to address all physical and psychosocial needs of patients with cancer.

These are persistent problems related to cancer care, but as long as I am able to, I hope that my story and efforts are able to provide hope and inspiration to those who need it. Especially during these times, a gift and the message it brings—that you are loved—mean so much. And for me, cancer has certainly taught me how to love and be loved.


Recommended Reading

Charles Graeber’s The Breakthrough: Immunotherapy and the Race to Cure Cancer

In this moment

“Is there a pressure to be positive all the time?” my friend Kathy asked.

It’s a good question. I said, “No,” and then “Yes,” and added in a “Maybe.”

But it’s not a simple yes, no, or maybe. It’s actually Yes-No-Maybe all at the same time. My kid is on Facebook and so is my family. My friends are on Facebook and they want the best or at least to know I’m not suffering. I’m aware of that and of them. But that doesn’t mean I show up fake or put on fronts. I don’t.

The pressure to be positive isn’t external. I am safe to be real with SO MANY people and that luxury is a gift beyond measure. The desire to be positive comes from within but it’s not motivated by pressure. It’s real. In general, I ACTUALLY FEEL positive.

And also, when my oncologist asks how my partner or daughter are doing, I say:

“Well, I’m cranky, lethargic, have chemo-brain, and obsessed with recurrence so that’s fun for them…”

That’s also real.

Real is positive.

So, when people say I’m strong, a rock star, a warrior, and a fighter, I can’t say I feel I am any of those things. My day to day to life has been changed and though I feel 100% half-ass as a mom, partner, friend, relative, and employee – I also know I’m doing the best I can.

I don’t even have much time to think of how I’m doing because I’m so busy doing, if that makes sense.

It’s like I woke up after surgery standing in the middle of a highway I didn’t drive myself on. The focus is dodging the cars going 75 m.p.h. on my left and right while feeling groggy and confused. When I manage to make it to the sidewalk or the rest area, the relief I feel is real. I’m happy to be alive and out of danger. It’s a genuine and consuming experience. I’m relieved any time I’m not in the road and also aware I could be dropped back on that highway in another minute, day, week, or year.

That’s the complexity and reality of living with cancer (#ovarian, high-grade serious, stage 3) that, even when it’s effectively treated, still recurs 75% to 85% of the time. To have no evidence of disease isn’t the type of blessing I’ve been in the habit of counting.

For decades, I have had the luxury of physical wellness and had never stayed overnight in a hospital. Health isn’t something I take for granted anymore but that doesn’t make me a warrior as much as it makes me someone changed by cancer more than by choice.

I used to think people were sick with cancer, and either mounted a “successful” fight and returned to living or lost “the fight” and died. It seemed either/or and as those were the two extreme outcomes.

I knew my mother HAD cervical cancer in her early 20’s and survived. I knew that my Nana and her two siblings had cancer in their 60’s, and did not. They died.

I know cancer is always a full-on fight for the person with cancer and those that live with and love them (us), but fights are won or lost and that is the problem with the “fight cancer” narrative. It’s way too simplistic for the complexity of cancer, cancer treatment, cancer survivorship, palliative care, and grief.

It omits the vast amounts of time that many of us live with cancer. We live with it in active form, or in remission, or in fear of recurrence, and sometimes with recurrence after recurrence. That way of living may last one or two years or one or two decades. We may have years we seem to be “winning” the fight and years we seem to be “losing.”

But winning and losing is far too simplistic. Some live and have loss. Some die and should be counted as winners.

I’d never known some fight the same cancer repeatedly, or “beat” it before getting another kind and another and another. I didn’t know that people cancer can be a lifelong disease and that some kinds are genetic time bombs in our bodies and families that can put us at risk even if we never smoked.

I didn’t know that one can have or five surgeries, that the side effects can start at the head (loss of hair, headaches, chemo brain, no nose hair, dry mouth, hearing loss), for example, and go all the way to the feet with lymph edema, joint pain, neuropathy, and that all the organs in between can be impacted as well.

I didn’t know that most cancer side effects are not from cancer but the treatments to fight, eradicate, and prevent more cancer.

I didn’t know that in addition to chemo, one might contend with liver or kidney issues, with high or low blood pressure, with changes to the way heart beats, the digestive symptom works.

I didn’t know that cancer surgery might include a hysterectomy and removing some or several organs, lymph nodes and body parts I’d never heard of. I didn’t know how it’s impossible to know what is from cancer, chemo, menopause or the piles of pills one is prescribed.

I didn’t know how much the body can endure and still keep going. I didn’t know I’d have a body that would have to learn and know all that I was mostly ignorant about -even though cancer is a disease not unknown to my own family members.

I am still learning and knowing and going. I hope what I learn keeps others from having to have first-hand knowledge of the cancer experience.

And even as I say that I know the ways I’ve been changed are not all bad, hard, or grueling.

I didn’t know that at, even in the midst of being consumed by all things basic bodily functioning (breathing, heart beating, eating, pooping, sleeping, and staying alive), one can also be grateful, satisfied, and appreciate life and loved ones.

I know it now and feel grateful daily.

Five months after my diagnosis, I’m what’s called NED (No Evident Disease). It means that after surgery, and then 5 rounds of chemo, a carbo/taxol combination every 3 weeks, there is no sign of ovarian cancer. My CA 125, a cancer marker in the blood, is back to normal. Things are looking better today and I’m grateful, optimistic, relieved, but also know that my life is forever changed, and I’ll never be out of the woods.

Despite my NED status, my chances of being alive in 10 years are 15%.

Despite my NED status, my chances of being alive in five years are less than 30%.

Did you know 70% of those with ovarian cancer die within five years of being diagnosed?

I’m not a statistic, but a person – still, it’s hard not to do the calculations.

5 years from my diagnosis I’ll be 57, and my daughter 21.
5 years from my diagnosis, my partner will be 62.
Will we get to retire together, ever?  Will I get 5 years?

It’s hard not to wonder if some or all of those five years are what most would consider “good” years and how I will manage well no matter what? And how my loved ones will fare…

So I focus on moments, days, and now.

My new mantra remains, “In this moment….”

It’s how I approach all of my days.

I do think and worry about the future, and even plan for the worst while also planning for the best. Because the best is always possible.

What if, I’m the 15% and live for 10 or more years? What if I make it to 62? What if a new way to detect, manage, or treat ovarian cancer is discovered? What if I discover some synergy in remedies and medicines not yet combined?

Maybe I will see my kid graduate college or start a career. Maybe I’ll help her shop for furniture in a new apartment. No one knows the future. No one guaranteed more than now.

Maybe I’ll get to go to Europe with my partner, elope and return married, or stay forever engaged.

Maybe I’ll attend a mother-daughter yoga retreat with friends like I’ve always wanted to do.

Maybe I’ll spend a month at a cabin writing and eating good food with my besties?

Maybe I’ll be able to be there for my family members and friends the way they have been there for me?

Maybe I’ll get to walk my dog at the same beach and park, with my guy, my brother and sister-in-law, and our dogs and kids?

I don’t know how much time I’ll get or what life holds.

I know when my Nana died in her mid 60’s it seemed way too soon. I know that now, if I make it to my mid 60’s, it will be miraculous.

I don’t put as much into my retirement savings.

I think more about how to spend time, and money, now.

These are not negative thoughts they are the thoughts of someone contending with cancer and wide awake while pondering my own mortality.

“You won’t die of this,” some have said. “Cancer won’t kill you.”

But no one knows that for sure. It’s not an assurance the oncologists offer.

People mean well when they say such things but I no longer bite my tongue when I hear these words.

I say, “I might die of this,” (and I think, but don’t say, and you may as well).

I do remind people that we are all going to die and few of us will get to choose the time or place or method. It’s not wrong to acknowledge mortality. It’s not depressing and it does not mean one is giving up. I want to be responsible, and quickly, as I don’t have the luxury to be as reflective as I used to be because cancer is all-consuming.

I’ve barely had a moment to reflect on the past five months never mind the last five decades. I am trying to stay on top of the bare minimum requirements of being alive. I can’t yet keep up with emails or phone calls or visits. Projects and goals and plans of all kinds have shifted, paused, halted, or been abandoned.

My energy is now a resource I have to monitor and preserve. My will is not something I can endlessly tap into or call upon to motor me and keep me motivated. There’s no resource I have yet to tap into or call upon. Each day, I must consciously and repeatedly work to fill the well. And now, when friends and family who work while sick, I no longer think they are tough or strong. I think of how we routinely punish and ignore our bodies. I notice how often we run on fumes, require more of ourselves than we have as though we will never tire out.

I think of all those who must or feel they must keep going no matter what, without pause or rest, oblivious to the toll it will take or of those who have systems that can’t fight their germs. And I think of employers who sometimes require it because they offer no paid time off.

I used to run myself ragged. I used to say, “I’m digging deep, into my bone marrow if I have to.” I wasn’t being literal.

Now, when my iron and my platelets go low, I think of my old words in new ways. Now, even my bone marrow isn’t what is used to be.

I’m entirely who I always was and completely different.

It’s both.

I am more and less of who I was.

My life and days are simple and structured now and also heavy, layered, and complex. Who and what fills my day, by choice and not by choice, is radically different.

Cancer changed my life. That’s irrefutable and will be whether I live or die in the sooner or in the later.

I speak with and interact with doctors, nurses, life insurance and disability insurance and pharmacists more. I spend more money on supplements, clean eating, and make more time to walk, exercise, and sleep. There’s so much less I am capable of.

But sometimes, even without hair, I feel totally like myself.

Sometimes, like this week, my daughter caught me in the middle of life, reading a book, petting the cat, on my bed in my heated infrared sauna blanket. I was relaxed and at ease.

I shared this photo and someone commented on how my “cat scan” was quite feline, – the image brought a whole new meaning to the “cat scan” image.

I laughed and laughed and laughed. I’m still laughing.

In this moment, in many moments, I’m humbled by the enormity of all things cancer and being alive. That’s real. That’s there. It can be intense.

But also, in this moment, I’m laughing.

And laughing, it turns out, is my favorite way to live.

The Power of Patient Storytelling #patientchat Highlights

Last week, we hosted an Empowered #patientchat on the power of patient storytelling with special guest Kerri Sparling (@patientrev). Kerri was diagnosed with type 1 diabetes in 1986, sits on the Patient Revolution team,  and is working towards careful and kind care. The #patientchat community came together and shared their insights and best advice.

Top Tweets and Advice

Raise Awareness

 

 

 

 

 

 

 

 

 

Enlist Support

 

 

 

 

 

 

 

Share Your Story With Your Doctor

 

 

 

 

 

 

 

 

 

 

 


Full Chat

My Breast Cancer Story

I was diagnosed with breast cancer in 2011. It was found by accident on a chest x-ray, and I was shocked. There was no history of breast cancer in my family, and I never thought it could happen to me.

Cancer patients are supposed to be upbeat; we are supposed to relax and trust that our doctors will provide the best possible care. I had never had a serious illness before, so I was naïve about what to expect from the medical establishment. I wanted to feel that I was safe and in good hands, and that I could simply follow my doctors’ advice. Unfortunately, that was not my experience.

Our physicians are usually our primary source of information, but the fact is that medicine in the USA is a business. Physicians are paid for their time, so unless a patient is a family member or a VIP, most physicians will not allot a patient any more time than the number of minutes that is the “standard of care.” Some doctors are more caring than others, but the for-profit system that we have in the United States rewards oncologists financially if they squeeze in as many patients as possible. A surgical oncologist will want to do surgery; a medical oncologist will want to do chemotherapy; a radiation oncologist will want to do radiation. This is what they know and what they are paid to do; and most oncologists want to get on with it as quickly as possible.

What they will usually not do is spend extra time consulting with specialists and/or looking in the medical literature for newer and better ways to treat their patients. They will generally not become knowledgeable about any kind of treatment outside their specialty, such as nutrition or any type of complementary medicine. I suspect that most oncologists would be willing to spend the time if they were paid, but insurance in the United States will usually not reimburse for these kinds of activities. In fact, the extra time that an oncologist would have to spend would actually cause them to lose income.

It seemed to me they just wanted me to follow their program, but I knew from even a very quick survey of the literature, that cancer decisions are not easy and simple. The treatment is often unsuccessful, and the side effects can be life threatening. Every patient’s case is different, so the “one-size-fits-all” approach on which traditional cancer treatment is based may not be the best way to proceed. Every year 40,000 women in the United States die of breast cancer after getting the standard of care. I did not want to be one of those statistics.

Because I have an academic background, it was natural for me to jump in and do a lot of research. I went to books, journals, and the Internet. I also got a huge amount of help from other patients. I told lots of people that I had breast cancer, and I gave them permission to tell anyone they wanted. My thought was that the more people they told, the fewer I would have to tell. But I had a huge side benefit—because breast cancer is so common, lots of former patients offered advice and support. I also joined a local breast cancer support group and an online support group at breastcancer.org. These patients were incredibly valuable to me. They referred me to doctors, including an integrative oncologist; they told me how to save my hair through chemotherapy; they told me about a program to reduce side effects through fasting; I was able to avoid neuropathy, mouth sores, and much more.

As of now, I have no evidence of breast cancer, but I am at high risk for recurrence or metastasis, so I am not able to simply return to the life I had before. Conventional cancer care offers periodic tests to see whether the cancer has returned, but it does not offer anything beyond hormone therapy to prevent the cancer from returning. The problem is that if it returns it will likely no longer be curable. I had to go outside of conventional oncology, where I found a lot of evidence that changing one’s “terrain” can keep the cancer dormant. Working with an integrative oncologist, I follow a program of diet, supplements, exercise, mental/spiritual practices, and avoidance of environmental carcinogens.

I learned a great deal from my cancer experience that most people don’t know, and I wanted to share my experience. I wrote a book that I hope will help other patients take charge of their care, to help them make the best medical decisions and to stay in remission afterward.