The nuggets of wisdom she shares are hard won. Kristin’s cancer was discovered when she felt like she was having contractions – but wasn’t pregnant. She also had a history of endometriosis and adenomyosis prior to her cancer diagnosis, so Kristin’s care team recommended a hysterectomy.  

Kristin was trained as a Support Volunteer earlier this year. She is part of a pilot program between Stanford Health Care and Cancer Hope Network. The pilot’s goal is to help mitigate patients’ and caregivers’ fear and ambiguity around cancer diagnosis, treatment, and clinical trials. It’s an opportunity for patients and caregivers in the East Bay area to receive free and confidential support – and for survivors and caregivers like Kristin to share their hard-won wisdom.  

Initially diagnosed with a slow-growing endometrioid tumor, Kristin was closely monitored by her healthcare team. In addition to the full hysterectomy, Kristin also underwent a lymph node dissection. A year later, she returned from a family vacation and landed in the emergency room. She needed major surgery for a tumor that caused a “humongous” blood clot pressing on her femoral artery.  

Shortly thereafter, she was diagnosed with adenosarcoma, which had spread, with lesions on her liver, requiring removal of eight inches of her colon and a re-built bladder. She spent more than 16 days in the ICU and hospital, and when she recovered, started 10 months of grueling chemotherapy that caused hair loss and neuropathy, which she still has today. She was prescribed Megace and quickly gained 40 pounds, which was extremely difficult. 

After 15 years, she had a recurrence of her cancer with more surgery, chemotherapy and radiation. With the removal of part of her small bowel and the inability to properly digest foods, the treatments that saved her life have often been followed by unexpectedly challenging side effects.  

She is thankful to the family and friends who rallied around her during each of her bouts –  

Today, she’s found perspective. “While I have all these things to deal with, the alternative is that a lot of people die from ovarian cancer. I’m still here and that’s something I remind myself of all the time.”  

She’s used her own struggle to empower others, helping normalize discussions of “embarrassing” health issues. “If I have a large cut on my arm and ask everyone to look at it, it’s acceptable. But if you’re starting to talk about your body parts and bodily fluids – and there’s a lot of that with ovarian cancer! – it’s really hard.  

The self-proclaimed worrywart has introduced meditation into her daily routine, and it is helping. “Meditation didn’t change me….but it helped calm me down. It helps me save my worry for when it’s necessary.” 

She’s also seeing benefits from her lifelong passion for exercise. “I enjoy it. I feel really good when I exercise, and that has helped me feel better.” Faced with long-term neuropathy (you can find her tripping her way through life) she’s learned to give herself grace when bumping up against new physical limitations. “Sometimes, you want everything to be better. But it’s helpful to remember that “even if I feel 10% better, it’s progress,” she encourages.  

Kristin is an active member of Stanford Medicine’s Cancer Patient Family Action Committee (PFAC), a group of volunteers committed to the patient experience at Stanford. It’s been a fulfilling experience – “we provide specific feedback and insights to the coordinators, and they make real changes, which is phenomenal.” When she learned of an opportunity to serve in new ways through the pilot program between Stanford Health and Cancer Hope Network , she leapt at the chance to put her longtime passion for providing peer support into action.  

Kristin has always been a helper – providing guidance and answering questions for other patients she met – but she found the training offered by Cancer Hope Network especially useful. “Training is very concise. The commitment to complete the coursework is fairly minimal, but you get so much out of it, learning what to do and what not to do when talking to a patient. It gave me confidence and guidance.” 

She is passionate about her work as a volunteer – and thankful for the wide range of support offered through this pilot program. She joins Cancer Hope Network’s national bench of volunteers who’ve faced more than 80 types and sub-types of cancer, speak 15 languages and range in age from 19-94.) “Cancer Hope Network is like one stop shopping. It provides support for people wherever they are in life,” she said. “They’re like command central for matching people looking for a mentor with a volunteer who is a good fit.” 

“From our earliest conversations one thing has become clear. Stanford PFACs are made up of extraordinary people who are committed to improving the healthcare experience of others,” said CHN Programs Director Samantha Schrager. “That focus on helping others is shared by the broader community of Cancer Hope Network volunteers and another reason we are so pleased to combine resources and efforts with our friends at Stanford.” 

To learn more about becoming a volunteer or to request a free and confidential match with a trained Support Volunteer through the Stanford pilot program, visit cancerhopenetwork.org/Stanford.  

For healthcare and nonprofit professionals interested in teaming up with Cancer Hope Network to provide support for their patients, please contact Samantha Schrager, Director of Programs.  

The post Cancer survivor finds meaning and purpose helping others.  appeared first on Cancer Hope Network.

Back in 2005 I was upset. I knew the statistics about women diagnosed with late-stage ovarian cancer. I knew that Gilda Radner died from that disease. I knew the disease was relatively rare, roughly 700 women diagnosed in NJ a year. That is why I didn’t meet any women in my cancer center with the disease while I was in treatment. At the time all I wanted to do was talk to someone who had the disease and lived. When I saw a brochure for Cancer Hope Network in the waiting room, I picked it up and brought it home. I hesitated at first to call. I’m not too keen on cold calling someone. But one afternoon as I sat in bed I went ahead and called. I told the person who answered that I just needed to talk to someone who had been in my situation and lived. She took all my information and said she would call back when she had a match. The very next day she called and said she could connect me right then and there with a volunteer. I spent the next half hour talking to a woman diagnosed with stage 3b serous ovarian cancer, lived in my state, received the same chemotherapy and surgery and was a 5 year survivor. It was wonderful.  I was not alone. I could survive too!

When I was out of treatment one year, I called Cancer Hope Network and said I wanted to be one of their support volunteers. I attended training and within a few weeks I was talking to other women with ovarian cancer. I did take a break when I recurred and was in treatment but once treatment was done I was back on the phone. I have not had to pause my volunteer work since 2009 except for fun reasons like being on vacation.

Over the past 13 years, I have spoken to women diagnosed with ovarian cancer from NYC, Florida, California, Indiana, Texas, Kentucky and Kansas, just to name a few. Since I have taken part in a few different clinical trials, I have also been matched with women who may not have ovarian cancer but are considering a clinical trial. Some of the women I speak to are treated at the top cancer centers in the country and others are treated at small community cancer centers. I have talked to women who are a short ride from their doctor, those who drive eight hours to appointments and some who travel by plane and stay at hotels. During the past few years, I not only talked to women on the phone but have kept in touch monthly with women via e-mail. 

Since the spring of 2020, my discussions with women have also included the impact Covid -19 has had on their treatment. Many have bravely continued attending their treatments by themselves since caregivers were not allowed to accompany them. Others have had follow-up appointments using telemedicine video calls. Very few of the women I spoke to, although fearful of contracting Covid-19, postponed their treatments for that reason. Many are looking forward to being vaccinated if they have not already been. But no matter what we talk about in our calls or emails when I say “I felt that way too” the reply is the same “thank goodness I thought it was just me.”

The post Lucky, hopeful 13 appeared first on Cancer Hope Network.

Ovarian cancer survivor Ann’s commitment to helping others didn’t start when treatment ended. Like so many of Cancer Hope Network’s volunteers, Ann spent many years helping others.

Her cancer was diagnosed when the tumor grew so large that she could feel it in her abdomen when she laid down. When an ultrasound showed a tumor on her ovary, Ann was soon at her first meeting with a gynecologic oncologist. Her biopsy-included hysterectomy was soon scheduled, and Ann and her husband prepared for the day, confidently hoping her results would be benign.

While she was still under anesthesia, the doctor came out to give her husband the terrible news. That moment has stayed with Ann. “He heard it and was alone. That was the hardest part of the whole experience.”

Armed with a diagnosis, they met with a medical oncologist to create her treatment plan. “We felt confident and had hope. I’m very grateful that we had that.” After recovery from surgery, Ann’s PICC line was soon installed and her chemo was under way.

“The days in the hospital were a blur. I was in pain. Once I got home, the first day Jeff was at work and I was alone for the first time. I knew I shouldn’t google, but I went to the American Cancer Society’s page. The first thing that popped up was an article titled ‘Ovarian Cancer, Silent Killer.’ I slammed the computer shut and started sobbing. I decided then and there that I wasn’t going to pay attention to what people were saying and listen to my doctor instead.”

As treatment progressed and difficult side effects presented challenges, the hope she’d given others for through the years came flooding her way. People showed their care in a variety of ways – sending cards, making grocery store runs, or dropping flowers on her porch. “Friends would come and sit with me. They didn’t care if I looked crappy. We sat and talked. And they were ok when I couldn’t take any more. I could be honest.”

Help showed up in other practical ways. “I was on staff at my church’s children’s ministry. There were three of us on staff ,and the other two, plus volunteers, took a lot of work from me. My church continued to pay me my normal salary, even when I was out for chemo. They were supportive over and above the job and the financial help. They were like family. I am very grateful.”

A group of friends a little older than Ann rallied, wearing hats in solidarity. One distracted her with an invitation to go shopping. “It was the first time I took my scarf off in public. Here we were in this store trying on hats and it was so much fun.”

Family helped as well. Her son had just moved out but started coming for coffee on his way to work. “It was so special. I remember one time I had made coffee and he brought muffins. I was so sick from the chemo and I forced myself to eat because he’d brought it.” Her son, daughter-in-law and young grandson Noah made a 14-hour drive three times in three months. “Noah was a distraction. I just laid on the couch watching him play. It was awesome.” Today, her relationship with fast-growing Noah is strong. “We are blessed to now be living close by and able to see Noah a few times a week!”

Through treatment and recovery, Ann found solace in her faith. “I’d never want to force my belief down anyone’s throat, but my faith sustained me. Scripture has always been an encouragement for me and that continued as I turned to the Bible for hope. I clung to those verses through this time.”

Once treatment was complete, Ann and family celebrated with a party – complete with all of the guests decked out in hats.

She was grateful to avoid the lingering side effects experienced by some but struggled as she adjusted to her new normal. “I didn’t feel like the same Ann that I was before I had cancer. I was searching for normal.” She and her husband Jeff, staunch allies in the fight, had to adjust. “We’d gotten wrapped up in fighting and dealing with my cancer. We worked really well together and afterwards, we had to find our new normal.”

She channels that experience into conversations with her CHN clients. “I think sometimes it is easier to talk about something like cancer with someone you don’t know – someone who doesn’t know your family and friends, who never run into you or your husband at the store.” She encourages patients with the hope that things will adjust, and life will move along.

Today, she’s back to her pre-diagnosis ways, helping and volunteering and supporting others. She’s creating hope one match visit at a time. “If something good can come of this, Yay.”

The post Accepting help. Lessons from an Ovarian Cancer survivor appeared first on Cancer Hope Network.

She began treatment, but soon faced many complications, including a chemo-induced blood clot on her lung. “I was in the ICU for nearly a month,” she recalls. “They weren’t sure I would make it. My first medical team was ignoring symptoms, side effects and drug interactions. The decision to move to a different oncology team was simple. I was blunt with my new oncologist ‘You’re hired. Please don’t let me die. My kids are too little.’ That started a new relationship of open communication and making sure my doctor knew all of my side effects – and addressed the ones we could.”

Today, after a double mastectomy, 38 rounds of radiation, 12 cycles of chemo, 2 pulmonary embolisms, chronic recurrent cellulitis infections and at least 15 hospital admissions, Bridget’s health is vastly improved. She’s once again exercising. She has scars, but views them as badges of courage, not something to hide. “For each scar, I have a story to tell you. Yes, I survived. And you will too. Your inner strength, faith, hope and love will help you through.”

She’s grateful for the many ways her community came together in support – from  the integrative services offered at Carol G. Simon Center (“They offered me such love, support, guidance, direction, a plan…”) to friends she barely knew (“The community at Little Village Daycare collected money and paid for a cleaning service for a year. Each week, a family took a turn cooking two meals for me. These women pulled together and I didn’t even know them. Talk about the power of love and care.”) and her incredible husband Erich (“He is a firefighter, the most amazing man ever. He lost his mother in the middle of all of it, but he stood by my side, helped me mentally, physically, emotionally. He was my solid rock to the right of me. He always did things to make me feel special and outlandish. Never made me feel sick. He faced it right there with me.”).

She’s overjoyed to be watching her kids grow up. “We’re taking time to watch sunrises together,” Bridget smiles. “At one point, the doctor sat across from me and told me that I had three weeks to live. I bought two notebooks and started writing letters to each kid, focusing on every milestone I could think of. I recorded myself reading them stories through one of those Hallmark recording books.”
Bridget lives by her favorite mantra – “Get up. Dress up. Show up and smile. If you look good, you’re going to feel good it’s that simple.” Her energy and zest for life is infectious. “Even though you’re feeling shi**y, look in the mirror, face it and say, I’ve got this. I painted on my eyebrows. I wore big earrings and red lipstick. I was really into hats. Wigs made me claustrophobic so I got hats.” Her mother would also provide comfort and shopping ideas for all kinds of hats.

But she’s never forgotten those days after diagnosis. “I tell people the raw truth. You’ll deal with unknown side effects, the sleepless nights, challenges of acclimating back into society when your treatment is over.  No Reason to minimize what happened, just raw truth that yes these things happened to me, but I channeled my energy to focus on the reason why I had to get better.  When you have a reason why, you find a way HOW. It’s that simple.”

She recommends every patient gets a notebook, encouraging them to write what they’re thinking, what they’re feeling and, most of all, five things they’re grateful for each day. “Whatever that was, acknowledge it as something that was monumental. It helps validate your feelings and provide perspective.”
When asked about the best advice she ever received, Bridget’s answer is simple, “Don’t worry about anything. It’s going to be all right.”

Going through chemo, she’d gone to an ice cream shop craving peanut butter ice cream. Just before she stepped to the counter, the clerk scraped the last of the peanutty goodness from the bucket. “As I glumly looked at the empty container, the kid next to me, with the confidence of a three year old holding a rainbow bubblegum cone, encouraged me with those words. ‘Don’t worry about anything. It’s going to be all right.’”

“Talk about ‘out of the mouths of babes,” she laughs, recalling the lightning bolt of inspiration. “Here’s this kid who knows nothing about me. But she was right. It did turn out all right.” (And the worker brought out another tub of peanut butter.)

Shortly after treatment, her mother was diagnosed with Ovarian Cancer. Bridget knew all too well the journey and wanted to provide the same comfort and support as she received.  Her mom is doing well and now lives with her family.

Bridget’s focus continues to be on hope – “You have to live for now. You cannot worry about tomorrow. It’s promised to no one. When you worry, it’s like walking around with an umbrella waiting for it to rain.” Looking back at the fight she’s fought, she knows proverbial rain may fall, encouraging matches that “The sun is going to shine again. Life sucks right now. But the sun will shine again. Go do everything you want to do. Make your bucket list and check it off.”

“Before the C word, I would have never done that. Since the C word, I’ve gone to the Saratoga Springs, Lake George, Walt Disney World and have watched many sunrises in Siesta Key with good friends.”

“Remember these key profound words that STORMS always lose to the sun. “
“GET UP. DRESS UP. SHOW UP. SMILE. ”

The post Get up. Dress up. Show up. Smile. appeared first on Cancer Hope Network.

To be matched with a Support Volunteer, click HERE or call 877-HOPENET.

Through the years I have worked as a chemical engineer, packaging engineer, and high school computer science and math teacher. When I was diagnosed with Ovarian Cancer in 2005, I did not realize that I would “work” as an advocate longer than I held any of those positions.

During the spring of 2006, I had just finished my 9th cycle of chemotherapy for stage 3b high-grade serous epithelial ovarian cancer. I had a conversation with my gynecologic oncologist about how my insurance company had denied payment of my PET scan even though that test had determined the spot on my liver was not cancer and I could stop chemotherapy. She informed me that there could be a way to change similar situations for all patients and continued to share how I should apply to attend the Lance Armstrong Foundation’s (currently the LiveSTRONG Foundation) Survivors Summit in Austin, Texas in October. I applied, was accepted and made the trip to Austin. I met many amazing cancer advocates from around the country, and together we worked in groups to develop solutions to problems a cancer patient/survivor experiences. I learned the skills to create an action plan and how to advocate for myself.

In 2007, I attended LiveSTRONG Day in Washington, DC. Delegates from each state received advocate training. We learned how bills were passed and the importance of increased funding for the National Cancer Institute and Centers for Disease Control. In addition, we used this as an opportunity to practice what we would say when we met our state Senators and Congressmen before we visited our representatives’ offices.

I have continued to build on that initial training and share my story in countless ways, in person and via various social media platforms. I co-authored a book, attended medical conferences, spoke at a conference in Portugal, been a patient representative on a Clinical Guideline Panel, and co-founded a cancer community on Twitter (#gyncsm- gynecologic cancer social media).

But you don’t have to travel and take formal training to become an advocate. The first step is to decide what type of advocate you want to become.

Do you want to be an advocate for yourself? This a great place to start. Learn about your disease. Be sure to use reliable resources like those that SHARE Cancer Support offers as well as those provided by the National Cancer Institute, the American Cancer Society, and the American Society of Clinical Oncology‘s Cancer.Net. The more you know, the more you will feel comfortable asking questions and discussing treatments and tests with your health care professionals.

You can also choose to advocate for others. Caregivers can help advocate for their loved ones diagnosed with cancer, as well as for other caregivers. We who have been through diagnosis, treatment, and follow-up care can support those who are newly diagnosed.

How do you do this? Become a volunteer for an organization like SHARE, OCRFA (Ovarian Cancer Research Fund Alliance), or a local breast or ovarian cancer organization. You can attend events, help at health fairs, hang awareness ribbons, participate in social media and share your story with others to raise awareness.

You can also be a legislative advocate on the state and federal level, supporting legislation that can improve the care of cancer patients and survivors. Many organizations, like OCRFA, have online systems that will notify you via e-mail when votes for appropriation or related bills are occurring. They also have online forms to send e-mails to your Senator or Congressman with text you can edit to share a bit about your personal story.

On the state level you can reach out to your local representatives to support a bill or ask them to introduce a bill to improve care for cancer patients. Search online for your state’s legislation page. If it is anything like my state’s (New Jersey) page, you will find on the home page a way to search for bills in the current session. Search using keywords, such as ovarian cancer, cancer or breast cancer. If you want to show support for a bill, contact the representative from your district via e-mail or phone. Tell them you are a constituent and why they should support or not support a bill.

Lastly, you can be a cancer research advocate. I follow new developments in ovarian cancer research shared online by the NCI and FDA as well as SHARE, OCRFA, NOCC (National Ovarian Cancer Coalition) and the websites of many of the NCI Comprehensive Cancer Centers. I chose those websites because they offer accurate and timely information. I also follow on Twitter the annual meetings of organizations such ASCO (American Society of Clinical Oncology), SGO (Society of Gynecologic Oncology) and AACR (American Association of Cancer Research) and use social media (@womenofteal, womenofteal.blogspot.com) to share news with my followers. I read Cure Magazine, Cancer Today Magazine, and Coping Magazine as well as the SHARE newsletter. Having access to the latest news will allow you to better support the need for increased funding for cancer research and to help other women who may be looking for other treatments or clinical trials. As a research advocate, you may have opportunities to attend medical conferences. Sharing your experiences with researchers assures everyone that the needs of patients, and survivors is at the center of research studies and their outcomes.
If you want more formal training in research advocacy, you may sign up to be a research advocate with OCRFA or the Research Advocacy Network.

It was my gynecologic oncologist who planted the advocacy seed for me, and it has blossomed to enrich my life by forming friendships with cancer researchers and others diagnosed with ovarian cancer. Will you add your voice to mine?

Dorinda “Dee” Sparacio is an ovarian cancer advocate, author, blogger at Women of Teal, and co-moderator of Twitter’s #gyncsm chat.

The post A bit of advocate in all of us appeared first on Cancer Hope Network.

Adjective: having or showing an excessively high opinion of one’s appearance, abilities, or worth. Or: producing no result; useless.

Either is seemingly appropriate when it comes to making a decision whether or not to alter one’s looks by choice or necessity.

As a volunteer I have spoken to many people having to make a decision to surgically disfigure themselves or who already had the life-altering surgery. Some chose to have reconstruction others did not. Either decision is correct. Only we as patients can truly go deep into our being to make the decision. For me it was relatively easy. When I heard the doctor said the Basal & Squamous cells were spreading towards my sinuses, I knew my decision. If I didn’t choose the radical surgery I increased my chances that the cancer would go into the sinus cavity, then to my brain.

Luckily for me, my doctors were able to reconstruct my nose and not leave me with a “hideous” hole in my face.  That word. That awful, powerful word. Hideous. It’s been an integral part of my cancer journey. It will not define my journey.

I remember asking my doctor what I would look like after the 1^st surgery. His answer? “Hideous.”

Incredulous, I repeated, “hideous?” I ran to my trusted plastic surgeon who had previously done some non-cancerous surgery on me. I trust her with all my might and when she used the exact word (hideous) to describe how I would look, it was if someone socked me in my stomach. I completely lost my breath. She did add that she would repair anything after a couple of years. Well it has been four and I am still not in the mood. It took seven surgeries to get me to this.

Many men I have spoken to have chosen the non-reconstruction path and live without a nose. They are not vain at all; however, I have to ask if they considered their loved ones? Maybe they think because they are men vanity should never be considered?  The balance between vanity and a lack of vanity is surely delicate. No matter the final choice, this is all traumatic. From the time the words come out of the doctor’s mouth it is almost impossible to comprehend.

No matter the word choice, this experience was beyond horrible. I still cannot look in mirror and not see me after the first surgery. Consequently, I am never happy with the way I look no matter what is staring back at me. I use more makeup, tweeze my eyebrows differently to even them on my face, etc. But you know what? I am cancer free and decided to get on with my life and have a ball. I had to decide how long I was going to sit on my pity pot. If I chose to give in to the self-pity, my life would be miserable and I knew that negativity brings in negative energy. I could not risk that.

Which brings me back to vanity.

I know a woman right now who was diagnosed with the same facial cancer and it is spreading to her sinuses. Sadly, vanity got in her way – she actually saw me go through my phases of surgeries and chose to just have radiation. She thought she would be fine. She has now had her gums, teeth and palate removed and the cancer has spread to her brain. When I speak to her now, I listen. I do not and cannot say a word. This was her decision. I am terribly sad that she now regrets that decision, as do her children, husband and grandchildren.

Facial cancer is rarely really talked about. It can be difficult to find support once the doctors tell you the diagnosis. I believe it is impossible for them to tell you what to expect. How could they? They have never gone through it.

It is impossible to know how you will deal with cancer when you are diagnosed and no one can  make the decision for you. What I do know, vanity is an adjective. We are all beautiful and we have been since our birth. Without vanity your soul shines and everyone can see it. Without vanity, you have more fun in life. Without vanity you quite possibly can live. As Rosalind Russell said in the movie Auntie Mame, “Life is but a banquet, Live! Live! Live!

The post Surviving Vanity appeared first on Cancer Hope Network.