Patient Stories Archives

Nancy’s Lung Cancer Journey

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No one is ever prepared to hear the words “You have cancer”. Even though (from asking for an x-ray that morphed into a CT scan) I knew there was a large tumor in the middle of my chest, I still wasn’t ready. And the pulmonologist was so kind in delivering the diagnosis. He went down the hall with the needle aspiration from my left clavicular lymph node and returned ½ hour later with a tri-fold paper towel on which he had drawn my lungs with the locations of the tumors – upper right lobe (T1), central lymph nodes of the mediastinal area (in total, about 2” x 5”), and one on the lymph node at my neck. And he said “You have small cell lung cancer (SCLC). There’s good news and bad news. The bad news is that it is extremely aggressive. The good news is that it is extremely responsive to treatment. If you are deemed to be “limited stage” (there are only 2 stages for SCLC – I call them good and bad), you have a 30% chance of long-term survival – a normal life.” In mid-August, I thought I’d be dead by Christmas. I spent about 2 minutes on the internet – what I saw was enough to tell me not to look further.

Doctors matter. A lot. I was treated at an NCI-designated Comprehensive Cancer Center by several exceptional doctors. What made them exceptional? Their listening and observational skills first and foremost, their dedication to staying current with research, and their caring. I was lucky – I didn’t have to search for them. These women – my primary care physician, my oncologist and my radiation oncologist kept me alive. They made me part of the 30%, even though my diagnosis said I was borderline extensive stage. It only took 5 months of chemotherapy (cisplatin and etoposide) and twice daily radiation during some of those 5 months, along with an episode of sepsis (broad-spectrum antibiotics, 2 blood transfusions, and a week in the hospital), to have me declared “No evidence of disease (NED)” by early December.

While my friends and family celebrated, I didn’t feel like celebrating. My life had been turned upside-down, I felt wrung-out and fatigued all the time, had lost so much weight that nothing fit, and had lost all my hair. And I knew that in January, I had to have 10 days of prophylactic whole brain radiation to kill any errant lung cancer cells (I was pretty sure it would make me stupid!) And that’s when my doctor prescribed an anti-depressant, which helped.

What did I do during this time – besides visit doctors and hospitals?  I walked – a lot. It was the easiest way for me to exercise, and my boxer was happy to help in that regard. I ate well – meaning lots of fruits and vegetables. And I meditated with guided CDs designed for cancer patients. And I kept up with my friends – often meeting one or more of them for lunch downtown. That not only passed the time but kept my spirits as up as they could be – a distraction if you will.

And when it was over, and I was deemed “cured”, I got angry. Angry that no one talked about the number one cancer killer. Through my doctor, I got in touch with the National Lung Cancer Partnership (now merged with the Lung Cancer Research Foundation), got involved in advocacy, and haven’t stopped. For me – it is healing to try to do something – anything – to prevent more people from going through what I went by raising awareness and research funding.

I have also learned that some treatments don’t let you forget that you had them. I had a CT scan every 90 days for the first 5 years after diagnosis. In the 4th year, they saw that my left ventricle was enlarged and referred me to cardiology for cardiomyopathy (heart failure). It was bad – so I went from surviving the #2 killer to facing the #1 killer! But with treatment from a cardiologist who specialized in heart failure from chemotherapy, I now have an implanted medical device, low-dose daily medication, and a nearly normal heart function. There’s also the foot neuropathy I’ve learned to live with (it’s not so bad) and some balance issues (likely from inner ear damage from cisplatin). But I’m alive!! Alive certainly beats the alternative.

Patient Profile: Peter Blaze Corcoran

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Patient Profile

Peter Blaze Corcoran

June is National Men’s Health Month. This month’s patient profile emphasizes the importance of continuing to explore options for maintaining optimum health after diagnosis, treatment, and recovery.

Peter Blaze Corcoran concedes that there is never a good time to get a stage four cancer diagnosis, but he says his diagnosis came at a time in his life when he felt secure in managing it. It was 2015 and he was a university professor nearing retirement. He had insurance, a supportive employer, and access to excellent medical care. “It came at a time when I was mature enough, secure enough, and knowledgeable enough,” says Peter. “I felt quite stable in dealing with it.” It was prostate cancer, a particularly aggressive form that was not confined to the prostate. Treatment required a radical prostatectomy and several months of radiation. During treatment doctor’s discovered a second cancer, liposarcoma, but fortunately it is non-threatening to date.

During his treatment, Peter was able to continue working part time which he says helped with his recovery. “It was a bit of a life line being able to work during treatment,” he says. “Work is so central to one’s identity.” The diversion of work meant Peter was able to maintain his pre-diagnosis identity. “I was not a cancer patient, but a professor who was still writing and administering.” It was important to him to maintain that persona because his goal was to return to the classroom, finish his career, and to be able to “go out on top” rather than retire early due to cancer. “The goal was to get back in the classroom, to teach again, and do another book and be involved in the university,” he says. “Which I was blessed to do.”

Peter retired this year and while he does have some health difficulties as a result of his cancer and treatment, he now has no evidence of disease (NED). He also has some other lasting effects from his experience. “I think I’m on a different path than I would have been without the cancer,” he says. “Cancer is an effective teacher.” Peter says he hopes he has learned to be more compassionate, empathetic, and more humble, and that he has developed a deeper gratitude for life. Cancer has been a source of spiritual development for Peter and he says it has brought him into what he calls a sacred space. “A diagnosis this serious is a wake up call to deeper questions.” says Peter who used his experience as a means to address life’s bigger questions, including questions about his own mortality and about the amount of suffering in the world. He also tackled the “why me” and “will it come back” questions, and in the answers he found what he calls a turning point. “I wanted to craft a life that diminishes the chance for cancer to return,” he says.

To do that, Peter turned to the Commonweal Cancer Help Program (CCHP). The program is a week long retreat for cancer patients in Bolinas, California. Patients can attend the retreat at any stage of their illness, but must be under a doctor’s care and able to care for themselves during the remote retreat. Each retreat is open to 8 or 9 participants at a time and focuses on integrative healing techniques. Peter says treatments include music, art therapy, qi gong, individual and group therapy, traditional Chinese medicine, massage, exercise, and nutrition. “Commonweal helps you integrate treatments and the importance of good nutrition,” he says. Patients develop a practice of intentional healing and Peter says it is a great opportunity for insight into your own cancer. While the program is expensive, Peter says there is a scholarship program. “Many people who’ve been there have made it possible for others to go,” he says. While Peter recognizes that Commonweal’s broad-minded approach may not be in some people’s comfort zone, he says that one of the lessons he learned from having cancer was to say yes to all forms of healing. He says that he had the best of western medicine and he’s grateful for that, but that he continues to be open to a variety of modalities and methodologies that can help him. “What distinguishes Commonweal is that they have analyzed and studied all methodologies that have helped people,” he says. “I feel as though it’s really helped me make a turn for the better in my life.” Peter adds that the program empowers patients to care of themselves. “You set your intention,” he says. “The power comes from setting your intention.”

A career educator, Peter moves forward with the intention of teaching others the lessons he’s learned. He’s very thoughtful about what he wants to share and he emphasizes the importance of his faith community to him and how comforting it was to him to know that people were praying for him and his healing. “My faith community was extraordinarily important in my recovery,” he says and credits being open to the power of prayer in his healing process. Peter encourages others to be open to a variety of healing, too. “It’s good to say yes and stay open to all possible ways of healing whether it takes you out of your comfort zone or not,” he says. Another thing Peter says to say yes to is a buddy. “It’s important to have a cancer buddy,” he says. Find someone who has been through cancer and can give you advice and can help you through the process. He credits his cancer buddy for helping him to be open to the opportunities that cancer might bring. She told him that if anyone should ever mention the word cancer to him, he should stop and pay attention. “Listen for the opportunity to help others,” he says.

You can learn more about the Commonweal Cancer Help Program at commonweal.org.

Introducing Darla Brown: An Empowered Patient

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“People with cancer who actively participate in their fight for recovery along with their physicians and healthcare professionals will improve the quality of their lives and may enhance the possibility of their recovery. Combining the will of the patient with the skill of the physician – A powerful combination.” ~ Harold Benjamin, PhD, 1982

In 2010 I became very sick. I was losing weight, had excruciating pain in my pelvis, and had extremely heavy, abnormal menstrual bleeding. I went to a doctor to get help. Unfortunately, that was just the beginning of my healthcare saga. I went through several late nights in emergency rooms (often sent away with painkillers), to more ultrasounds than I could count, to countless specialists, and yet the pain and other symptoms only worsened.

The first doctor I visited assumed the culprit was an ovarian cyst and each subsequent doctor I saw took her word for it.  I should admit something at this point in my story. Up until this point, I tended to be passive about my health care. I didn’t question diagnoses or treatments. When so many doctors agreed on my diagnosis, how could I question them? However, when I eventually became “patient active” (a term that I later learned), it actually saved my life.

One sleepless night, I woke up on the floor of my kitchen. The anemia (a result of the abnormal menstrual bleeding) had caused me to pass out while getting a glass of water and I had hit my head.  I went back to the doctor the next day and insisted more tests be done.  I implored, “Please don’t send me home again without a real diagnosis.” I demanded something be done. This was my first step to becoming an empowered patient.

Empowered patients realize that they have to make the healthcare system work for them. Through my experience I realized:

  • It is too easy to get passed around from doctor to doctor in our healthcare system. This wastes valuable time.
  • It is easy for doctors, who can be overburdened, to focus on the most squeaky wheel and forget about passive patients.
  • Had I been empowered sooner in my healthcare journey, I would have gotten to a diagnosis sooner and my cancer would not have become life threatening. My cervical cancer symptoms were actually evident from the start and yet I went undiagnosed for several months.

I was finally diagnosed with stage 2 cervical cancer and found a wonderful healthcare team at Cedars-Sinai Cancer Center. I didn’t have insurance at the time (I was too sick to work and this was before the ACA/Obamacare) but I did qualify for a California state run program called the Breast and Cervical Cancer Treatment Program (BCCTP).

By the time I actually got into treatment, the tumor had grown and had positioned itself inside my cervix so that surgery to remove it was no longer an option. Instead, I went through two months of daily external radiation, weekly internal radiation (also known as brachytherapy), and weekly chemotherapy treatments. I am so grateful that it was treatable, and I am thankful for the healthcare system that made it so. However, had I been properly diagnosed and treated earlier on, I would have required less invasive and less expensive treatments.

Since my diagnosis and recovery, I have spoken to many patients about their experiences and I am honored to be invited to share those stories and lessons in future blog posts.

Surviving Melanoma

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I discovered my Melanoma 14 years ago in a hotel mirror. It was at a Courtyard by Marriott where the closet doors were mirrored behind the vanity. I was getting ready for a day filled with important meetings and my back was readily visible in the reflection of the mirror. It was a black pin sized marking. So, small but so obvious. I made a mental note to deal with it when I returned from travel, but one day bled into the next and I never made it a priority. I didn’t think much of it, only that it was black in color and something I had not noticed before.

It was several months later as I sat on the beach enjoingy the warm sun (how ironic since it almost killed me) when a friend mentioned it to me.  She thought I really needed to get it checked out. She said it was really black and concerning…. mental note #2 in the books.  Vacation ended and we headed home.  I made a few calls and since I had never been to a dermatologist I felt it was a daunting task.  I was embarrassed to admit my concern and lack of knowledge…I mean really…it’s just a dark freckle.

But it wasn’t!  Turned out to be a serious case of melanoma – stage 2. I googled it and it scared me even more.  Was I seriously going to die from this pen mark size of a mole?  It seemed impossible.  Denial was my first defense and only strategy. I had pre-op, counseling, operations and treatment and many, many sleepless nights, I’ll be sure to share even more in my future diaries – this is just the cliff notes.  So many emotions to share and victories to celebrate.  I think this will be a learning place.  A place to support and to be inspired.

Yesterday, I found myself in a similar setting (a Courtyard as a matter of fact) and it reminded me of my experience. It was a bit unnerving and while I am thankful to be here to talk about it today – I was filled with uncontrollable anxiety as I witnessed the view of my back…afraid I might see something new. Something so simple yet so impactful.

We live to tell! Sharing my story is therapeutic and my feelings are real.  All of you who read my tale and scribble in my diary make my fears more tolerable and I appreciate each and every one of you every day!

 

Real patient experiences shared privately at www.TreatmentDiaries.com.  Read more, share if you like or join in the conversation.  Making sure you feel less alone navigating a diagnosis is important.  Connecting you to those who can relate and provide support is what we do.

It’s NOT Just Skin Cancer…

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Real patient experiences shared privately at www.TreatmentDiaries.com.  Read more, share if you like or join in the conversation.  Making sure you feel less alone navigating a diagnosis is important.  Connecting you to those who can relate and provide support is what we do.

I’m new to Treatment Diaries and since this is my diary, I want to share some thoughts that are now near and dear to my personal experience with this dreadful condition.  Let me start with what I’ve heard more times than I can count over the past decade and most often when sharing my Melanoma diagnosis with those who are uninformed.  It goes something like this – “What kind of cancer did you have?”  My response, “I was diagnosed with stage III Melanoma.”  The exchange – “Oh I think I’ve heard of that, it’s just skin cancer…right?”  In fact, I’ve had people tell me I was lucky to just have skin cancer.  Quite possibly the one thing you should consider never saying to someone with Melanoma.  Not only is it completely untrue it will do nothing to make the individual with the diagnosis feel any better about their situation.  The truth is, Melanoma is one of the deadliest forms of skin cancer.  It’s not just skin cancer.

So now that we are clear on it’s not just skin cancer, a few things I wish I would have known:

  • Research suggests that approximately 90% of melanoma cases can be linked to exposure to ultraviolet (UV) rays from natural or artificial sources, such as sunlight and indoor tanning beds.
  • However, since melanoma can occur in all melanocytes throughout the body, even those that are never exposed to the sun, UV light cannot be solely responsible for a diagnosis, especially mucosal and ocular melanoma cases.
  • Current research points to a combination of family history, genetics and environmental factors that are also to blame.
  • You can read this Melanoma Fact Sheet for more information!
  • Support for melanoma patients is incredibly important and connecting with those who relate brings much needed encouragement along with valuable insight.

Unlike other cancers, melanoma can often be seen on the skin, making it easier to detect in its early stages. Keeping track of the changes to your skin and seeing a dermatologist on an annual basis can be a lifesaving event. If left undetected, however, melanoma can spread to distant sites or distant organs. Once melanoma has spread to other parts of the body (known as stage IV), it is referred to as metastatic, and is very difficult to treat. In its later stages, melanoma most commonly spreads to the liver, lungs, bones and brain; at this point, the prognosis is very poor.  Again…it’s not just skin cancer.

Skin cancer comes in many forms and for numerous reasons.  Your job is to protect your skin.  Our skin is the biggest most vital organ we have to care for.  We can’t live without it nor can it be replaced.  It’s ours for as long as we live so we need to take the vitality of it seriously.  Stay out of the sun, look for changes and recurring issues to your skin even in areas that never see the sun, see a dermatologist on a regular basis and make sure to wear sunscreen all year around.  It’s not just skin cancer especially when it can kill you.  It’s a serious topic and I feel so very fortunate to be able to share my personal experience.  I hope to be a help to others newly diagnosed and an inspiration to those on the journey.  Let’s kick melanoma to the curb together…

5 Lessons Learned from an Ovarian Cancer Survivor

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Editor’s Note: Blog written by MyLifeLine.org founder and ovarian cancer survivor, Marcia Donziger. She shares 5 of the lessons learned after she was diagnosed with ovarian cancer at age 27. 

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Marcia Donziger

In 1997 I was 27, happy, free, and traveling the world as a flight attendant. Newly married and ready to have a baby, I felt strong and invincible. My future was unfolding just as I expected it to. Until the symptoms appeared ever so subtly. Squeezing cramps around my waist. It hurt to pee. After a few weeks, I marched my invincible self into my doctor’s office, told her I diagnosed my own bladder infection, and may I please have antibiotics.

She decided to investigate a little further. After an ultrasound, she discovered a grapefruit-sized tumor growing on my left ovary. “Could it be cancer?” I asked. “No,” my doctor assured me, “you’re too young to have cancer.”

Surgery was scheduled to remove my “benign tumor.” I was excited to get it over with, so I could go on with my life and have babies. After 5 hours of surgery, I woke up in the recovery room, my body uncontrollably thrashing in pain. My doctor hovered over me and broke the news, “I’m sorry. You have ovarian cancer. You’ve had a complete hysterectomy. We took everything out.”

What I heard loud and clear was “Cancer. You can’t have children.”

The diagnosis came as a shock. Stage IIIC ovarian cancer had taken over my abdomen, resulting in an emergency hysterectomy that I was not prepared for. The intense grief hit immediately. The loss of my fertility was most crushing. I had always wanted to be a mom.

Halfway through chemo treatments, I celebrated my 28th birthday, but there wasn’t much to celebrate. My marriage was dying. Cancer puts tremendous stress on a couple. Some couples can handle it together like champs. We didn’t. We divorced 1 year from the date of my diagnosis.

After treatment ended, I looked in the mirror to see what was left. I was 28 years old, ravaged physically and emotionally, divorced, and scared to date as a woman unable to have children. Who would love me now?

Now, almost 20 years later, I feel strong again (although not invincible).

With the benefit of time and perspective, I’ve distilled that traumatic cancer experience into 5 life lessons:

  1. Trust grandma’s reassurance, “This too shall pass.” As an ovarian cancer survivor herself, my grandma is living proof of this timeless wisdom. Stressful events don’t have to be permanent. We don’t have to be victims. Although cancer is extremely painful and unwelcome, the bright spot is we are forced to build character traits such as resiliency, emotional courage, and grit.
  2. Create your own joy in the midst of crisis. There are ways to uplift yourself during the chaos of cancer treatment. For example, I took a pottery class throughout my chemo months to find solace in distraction and art, which helped soothe my soul and ease the journey. What would make you happy? Do some-thing just for you.
  3. Stop doing what you don’t want to do. If you were doing too much out of obligation beforehand, try to change that. You are only obligated to make yourself happy. No one else can do that for you. The key is to use this wisdom to prioritize your time and honor yourself, so you can be healthy for others. Drop what doesn’t serve you. Drop the guilt. Life will go on.
  4. Connect with others. The emotional trauma is hard to measure in a medical test, but it’s real. Anxiety and depression can go hand-in-hand after cancer—it did for me. In response to the emotional challenges I experienced, years later I founded MyLifeLine.org Cancer Foundation to ease the burden for others facing cancer. MyLifeLine.org is a cancer-specific social platform designed to connect you with your own family and friends to ease the stress, anxiety, and isolation. Gather your tribe on MyLifeLine. You are not alone.
  5. You are lovable after cancer. No matter what body parts you are missing, you deserve love just as you are. Cancer tore down my self-esteem, and it took significant effort to build it back up. I am dedicated to personal and professional growth now. Look into your heart, your mind, your spirit. Try fine-tuning your best character traits, like generosity or compassion. Never stop growing and learning. We are not defined by the body.

To wrap up my story—I learned that when one door closes, another opens. Today I am the proud, grateful mother of 11-year-old twin boys. Born with the help of a surrogate mom and an egg donor, my dream finally came true of becoming a parent. Where there is a will, there is a way. Never give up on your dreams!

About MyLifeLine.org: MyLifeLine.org Cancer Foundation provides free websites to connect cancer patients with family and friends so patients feel supported. To learn more about how MyLifeLine.org can help you or someone you know affected by cancer, please visit www.mylifeline.org.