My husband, Joe, and I have been married for almost five years. We’ve been together closer to nine, but decided in July 2018 to marry in my small hometown of Frenchtown, NJ in the little bookstore that had become a hub for us. We’re both authors and the closest independent bookstore is always the first place we go to make friends. Back in 2018, it was called The Book Garden, and we loved it and the owners so much that we decided it was the best place to bring our six kids—three from each of our previous marriages—and have the mayor officiate and sign our papers. It was simple, sweet, and incredibly meaningful. An absolute match to our relationship.

In August, we had a bigger event at Lake Tahoe. We both teach writing in an MFA program out there that affords us occasional expense-paid trips to teach on campus. What better beauty to have a wedding and once again, free! This time we dressed up proper, me in a handmade, vintage lace Etsy gown, and Joe in his kilt. One of our closest friends married us beneath the peaks at Mt. Rose with a community of writers and teachers we hold dear.

Then, less than a week later, back in Frenchtown, a truck came crashing through the building next to ours, exploded, and started a fire that would leave us homeless with nothing except the pajamas we wore when we escaped our tiny apartment. We spent one last year in New Jersey, only because a generous landlord gave us a discount on a house, but I cringed every time a truck passed by. I could no longer handle the sound of traffic. Meanwhile, Joe’s contractual university job was ending, and soon we decided it was time to move south, something I’ve wanted to do for a long time to escape winter.

We had our sights set on rural Virginia, but somewhat close to Harrisonburg, a college town with jobs and amenities, no more than 30 minutes away. The combination of living in the woods, but being able to take a short drive to a coffee shop or see a show seemed perfect. However, our house fell through and we had to scramble once more. What played out over the next two months, as we lived out of an Airbnb, was nothing short of miraculous, but we ended up in a place we never would have expected: the mountains of West Virginia.

Living in West Virginia: The Start of Our Journey

The population of West Virginia is only 1.8 million people which is about three times smaller than the size of New Jersey, whose population is over 9 million. For anyone familiar with Frenchtown and Hunterdon County, New Jersey, you know it’s considered rural. It’s a fairly pristine county of horse farms and rolling hills that hasn’t changed all that much since I was a baby, and you can enjoy the Delaware River, woods, trails and lakes as well as a bunch of small, noncommercial river towns. I also lived across the river in Pennsylvania for about twenty years, a bit more rural, more wild, considerable distance from a good hospital, which was an issue for me then as well, and I’ll write more about that soon. I’ve spent my life living in both small towns and the woods and I’ve always considered myself as a “country girl”.

But West Virginia was a whole new wild and wonderful world, vast and stunning and isolated.

We bought an adorable bungalow in the mountains, previously owned by an artist who had put so many gorgeous touches on the house and in her gardens. We got to inherit it all. I immediately got to planning more gardens, planting vegetables and flowers, and harvesting blueberries, raspberries and blackberries. Tree frogs and more birds than I’ve ever seen, and Luna moths the size of my hand delighted both of us. We created Instagram accounts to document the wildlife around us. We’d found a sanctuary on the mountain and even though we suddenly had tasks like chopping wood for the winter, and chasing a lot of unexpected visitors out of our house (hello, garter snake) we loved it. We moved right before the pandemic, so we had these ancient, untouched acres of oak and redbuds and dogwood to explore and care for instead of being trapped in our old apartment.

The only thing we kept saying, as the last few years have rolled by, was that if anything happened to one of us, we were way too far away from help, be it family or doctors. How would an ambulance or fire truck get up our dirt road and steep drive? But we weren’t even fifty yet, both have been very healthy throughout our lives, and so we weren’t terribly worried. Nonetheless, at the end of 2022, Joe got a new job again and we put our beloved home up for sale to move closer, and in Virginia, sort of a resurrection of our original plan. The mountains healed me. I was ready to get back to people. In small doses, anyway.

At the same time, Joe started experiencing problems with swallowing. He’s had some issue with this in the years I’ve known him, but it had never been severe or persistent enough to be a warning sign. And prior to my new cancer education, I wouldn’t have even known it to be a warning sign. I sometimes thought it was a response to anxiety, and in December with a new job and pending move, that was my assumption once more. But then he got the flu and completely lost his appetite. We live about fifteen minutes from a decent-sized town that has most of the amenities one needs, basic as they are—Walmart, Tractor Supply, Sheetz—and when he wasn’t getting better, I worried he might have pneumonia. So, he went to EZ care for a chest scan. 

Maybe two days later, after we got the results of that scan, I wrote in my journal:

January 18. Day One.

Cancer Diagnosis & The Other Side of Rural Living

Although we didn’t have the official diagnosis yet, I knew the scan was accurate once I did a little research. He had esophageal cancer and it had already spread to his lymph nodes. Later we would learn it’s Stage Four. It’s still baffling to us both that something so extreme can be lurking in your body without making itself known until the last minute. Especially in someone who has now just turned fifty, has always been physically active, never overweight a day in his life, doesn’t smoke, has no family history of cancer, no real markers for this beast.

If one thing is true, cancer does not care about statistics.

My first panicked thought was: we need to move, like, yesterday. While there is a small, 25-bed hospital about an hour away, the closest cancer center is an hour and a half. As I began reading about how he would be treated—chemoradiation that would involve daily appointments—I realized there was no way we could stay home while this carried out. Not only because driving three hours a day for a fifteen-minute radiation appointment would be ridiculous, but what if there was an emergency? I’ve heard plenty of stories; I knew the poison that kills cancer is no joke.

This is where a good friend of mine stepped in to help. She works for Cancer Hope Network and she reached out with resources from her organization and other connections immediately. I had no idea there was so much out there for families going through cancer. Mentor connections, gas cards, hotel discounts, even pet care services and so much more. In the beginning, after a diagnosis like this, there is so much to weed through, but Rachel made it possible for me to focus on a few really important priorities.

Still, it’s just us out here in the woods. We’ve made a few friends, (bookstore related of course) but not a ton since most of our time here was during a pandemic!  While our friends have been incredibly supportive and helpful, they are not physically close to our actual home, and I’m not sure we could expect them to truly be on the inside of this awful journey, in the actual muck and darkness and constant hypervigilance that comes along with it.

So just like that, our sanctuary of a home turned into a trap. But we couldn’t go forward with selling it during Joe’s treatment, so we took it off the market and started to draft a new plan that involved living in a hotel near the hospital for six weeks. A plan that was only made possible by our enormous network of distant friends and family who generously contributed to our fundraiser. A plan that the majority of people who live in West Virginia would never be able to make. Although the hotel offered a generous discount for cancer families, it still amounted to thousands of dollars. Money we could not have come up with on our own.

The Challenges of Rural Cancer Care

This has opened my eyes to the struggles in rural areas in a whole new way, and while Joe and I do have the resources to change our living arrangements so that he has the care he needs—again because of so many generous souls—that would not be the case for most people in this region. According to a recent PBS broadcast, (which I encourage you to watch) nearly two-thirds of areas with a shortage of primary health care professional are in rural communities, let alone specialized medicine like cancer care. And 99% of medical training takes place in cities and suburbs, where doctors usually end up working. So rural areas are frequently left to very few options.

Medical schools like WVU are beginning to take this on by giving doctors extra training and education to specifically work in rural areas since federal programs have failed the region. In many cases West Virginia residents have to drive far more hours than Joe and I have to see a specialist. So, these primary doctors have to serve as specialists in order to help their patients avoid such trials just to receive quality health care.

People who live in rural areas are often overlooked and unfairly judged. I have received hurtful comments from people for moving to a “rural red state”, and in today’s polarized society the divide between the choice to live urban or rural has become a political decision at best, and a moral one at its worst, which is completely ridiculous. The reality is, people of all backgrounds and politics and belief systems live in both cities and in rural areas, and everyone deserves a quality level of health care. Without easy access, people avoid appointments and treatments because the financial burden is too high, or they don’t have reliable transportation or the ability to stay in a hotel. While some young people are beginning to get their medical education and return to the rural land they love to practice, West Virginia is in need of so many more.

Receiving this diagnosis has been a blow to both our lives, financially, emotionally and physically. We are slowly figuring it out despite the uncertainty, are both adaptable people who will run with whatever change is needed in our own lives, but in the meantime, I’m learning how much more difficult this diagnosis and rural cancer care could be for other families. I find it incredibly sad that such a beautiful landscape, a place where so many escape to from the city for recreation and peace, is hurting for such basic needs. We cannot write off rural areas simply because it’s easy to look away, or we don’t like the perceived politics, or in our case, leave. It’s not fair to use up a place for our own enjoyment (or industry) and turn a blind eye to the people who have lived here and cultivated the land for generations. I look forward to sharing more of our story, and the stories of others I’ve witnessed while living here to help further expose the struggle for what many people in other areas of the US consider basic needs. I’m not the first in any sense to become aware or be affected by of some of the unique issues in rural areas, but in my own tiny way I hope to help.

The post In the Woods with Cancer: Day One appeared first on Cancer Hope Network.

Cancer Hope Network’s volunteer team of cancer survivors and cancer caregivers is growing! Graduates of our first peer mentor training class of 2023 are prepared with the skills and resources to provide hope and help to cancer patients and caregivers across the country.  

Members of this class experienced a variety of treatments – from chemotherapies and radiation to Goldilocks reconstruction, and even a splenectomy. Some were matched with a Cancer Hope mentor when going through their own treatment and are now ready to pay that service forward. Others served as caregivers for their loved ones during their cancer experience Their hobbies include meditation, nature and wildlife photography, and working out. Members of the class speak Spanish, Italian, and Arabic.  

“There is a through line of hope and care with every person who serves as a CHN peer mentor, but each training class brings a special perspective,” said CHN program director Samantha Schrager. “This class was particularly passionate about listening to their bodies and finding ways to stay positive no matter what the circumstances.”  

— 

Three lessons from cancer survivors they would give a friend who was newly diagnosed. 

Be brave in your own way. 

Debbie encourages newly diagnosed patients to embrace honesty and transparency. “It’s okay to say you’re scared. Sometimes we’re afraid to tell people it’s scary. Telling people helps acknowledge and overcome the fear. Don’t be afraid to say you’re scared. It’s real and it’s okay.”  

Accept help.  

Endometrial cancer survivor Marianne shared her deep gratitude for the support she received from family and friends and caregiver mentor Ashleigh recalled how difficult – but necessary – it was to accept the help of others. 

Ask questions.  

When newly trained caregiver mentor Christina was six, her mother cared for her aunt who was going through cancer. Seventeen years later, it was Christina’s turn to care for her mother. Today, mother and daughter are doing well, and those formative experiences made Christina a passionate advocate for the benefits of genetic counseling. They’ve also helped her develop thoughtful insight. “Find support. Advocate for yourself. Find resources. Educate yourself. Make informed decisions. Everyone has their own experience.”  

— 

The January 2023 group of trained Cancer Hope Network Support Volunteers joins nearly 500 of CHN’s active Support Volunteers from across the nation. Peer support mentors speak 15 languages and range in age from 19-94.  

Support matches (the connection between a trained volunteer and a patient or caregiver) often start with a shared diagnosis or similar treatment. They are then personalized to meet the needs of each client based on shared life experiences or special circumstances. Matches are free and confidential – and often include multiple visits.   

Request a match with a trained cancer mentor, or call our Programs Team at 877.467.3638. 

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The post <strong>Cancer Survivors Share Lessons for the Newly Diagnosed. </strong> appeared first on Cancer Hope Network.

She’d noticed blood in her stool and went to the doctor in 2008. Their “It’s probably nothing, but let’s play it safe.  I’d like you to make an appointment for a colonoscopy” discussion soon took a turn. Rather than nothing, she was diagnosed with Stage 4 colon cancer that had metastasized to a large tumor on her liver.  

It was a dread-filled moment. “For me, Stage 4 was the same as death. There are no more stages after that.” She plowed ahead. Thanks to an extraordinary medical team, chemo, surgery, more chemo, more surgery, and mop-up chemo, she was declared “no evidence of disease” in 2009. Since then, she’s battled through two recurrences, including multiple surgeries and even more rounds of chemo.  

Through it all, she’s maintained her upbeat outlook on life, gratitude for her support system, and a determination to help others facing the same challenges. As a Support Volunteer, she’s providing hope and support for patients across the nation.  

“Not a day goes by that I don’t feel like the luckiest person in the world.  Many of my loved ones who were alive and well when I was diagnosed have since passed, yet I’m still here.  Survivor’s guilt is real, but I wholeheartedly accept the fact that I have unfinished business here on earth, that not even I know about.” 

She offers four tips for dealing with a colon – or recurring – cancer.  

1. Be a champion of your own care. 

“My surgeons and oncologists worked together as a team – and I was part of that team,” Julie recalls. Her first journey through cancer left her feeling empowered. “I became a lot more assertive and directed how I wanted things to go.” In 2012, she asked them to remove a spot they’d been monitoring on her lungs. “It wasn’t really growing, but it was weighing on me emotionally. When they biopsied, we found out it was related to my colon cancer.”  

She is resolute in her belief that patients can benefit from working with a team of professionals, relying on each to bring the experience and expertise of their specialty. “Your oncologist is your expert in your chemo plan. But if it’s in your liver, the liver specialist knows livers and the lung specialist knows lungs. I’d go to Taco Bell for tacos, but not burgers.” (Authors note: Post-pandemic, we promise to introduce Julie to better tacos.) 

2. Ask questions.  

Her second tip flows naturally from the first. Ask. Ask. Ask. “Never hold back your questions, because getting answers can be therapeutic. Sometimes, if we don’t ask questions, we let our minds run away from us.” The simple act of gathering more information can help relieve some of the upset and anxiety. “Fighting cancer is such a scary time. It’s easy to fall into bad assumptions. Questions help manage those assumptions.” 

3. Accept help.  

A self-described “eternal optimist” who is “large and in charge” and a natural caregiver, cancer taught Julie an important, if difficult lesson. Let people help. “I wasn’t very good at accepting help. I take care of everyone else. If I were to go through a hard time again, I’d be vulnerable enough to let others take the lead. I was such an actress, and it was exhausting. No one expected that of me except myself.”  

Her first instinct as a mother was to tell her children that everything would be ok and that they just needed to focus on their schoolwork. “In hindsight, I could have said ‘this is not normal, so let’s not pretend it is.’ My efforts to ease other people’s burdens – in ways they weren’t asking me to – were exhausting. I should have validated and acknowledged that what we were going through wasn’t normal.”  

When she did let people help, the comfort was palpable. Diagnosed at the height of the financial crisis, she was blown away by the generosity of friends and strangers who stepped up to donate vacation time and contribute to fundraisers. “I continued to work, but I missed eleven weeks for surgery, three days every other week for chemo. That generosity meant I kept my house. It was such a huge peace. With the fight I was already focused on, I didn’t have to worry about where we would live.” 

4. Keep perspective. Look for possibilities. 

As someone who would “do a million surgeries to avoid chemo,” the prospect of 12 rounds of chemotherapy was especially daunting. Julie’s surgeon helped her find much-needed perspective. “Don’t view it as 12 chemos. View it as one chemo at a time. Break it up into little tasks. If you look at 12, it’s too much” That worked, and after each chemo, she’d head back to the office where a big red marker was waiting to scratch off her latest small victory. “One at a time made it manageable. It was a mental game, but it worked.”  

Today, she sees her role as a volunteer in a similar way, helping patients find their own victories, and finding hope in possibility. “I want to be that beacon of hope for others with a stage 4 diagnosis. I venture to guess that there are many people like me who think stage 4 is synonymous with death. And here I am 12 years later.”  

“The statistics are not high. But the problem with statistics is that they focus on probabilities. But I don’t want to focus on probabilities. I want to focus on possibilities. My doctors were real, they didn’t sugarcoat, but it was combined with such confidence. I asked the tough questions. Anything is possible, so you might as well be focused on possibilities.” 

The post Julie Montas: A Masterclass in Cancer Survivorship appeared first on Cancer Hope Network.

FINDING SUPPORT 

Jeremy kept the circle of family and friends who knew of his diagnosis small, but the support they offered was significant. His mother, a nurse, was with him at the initial doctor’s appointment where he received his diagnosis, and her medical knowledge and “second set of ears” was valuable. “She was asking what turned out to be the critical questions.” Friends and family brought food, movies and games to his house between treatments. Others came and sat with him as he underwent infusions.  

He still laughs as he recalls the end-of-treatment gift put together by his then-girlfriend (now wife!) and some friends: a singing telegram, complete with personalized song that had “the entire treatment center rolling on the floor. Having a good time helped round out a terrible situation with some humor and light.”  

FINDING INFORMATION 

After being diagnosed, Jeremy started research immediately – including getting a second opinion a few days later and seeking out other individuals who’d survived testicular cancer. “Having open conversations with my family, my doctors, my girlfriend, my close friends” helped a great deal. “Being very open and honest about my concerns and my struggles at the time was incredibly helpful. The online resources I was able to find through CHN and medical journals were also valuable.” 

Jeremy was among the lucky ones – he responded well to surgery and treatments. His doctors were encouraging. “As cancers go, you’re lucky. No one thinks they’re lucky for having cancer, but as cancers go, this is very treatable.” Five years later, his good fortune is holding and life is good: he’s happily married to Lindsay, his scans are clean and he’s helping others facing cancer by serving as a CHN volunteer.  

LEARNING CANCER’S LESSONS 

Today, Jeremy is putting the lessons he learned during the dark days of treatment into good practice. He shared five of the most important:  

1. Keep a positive attitude 
   “It cannot be understated how important it is to remain positive in some of the darkest times. It’s very easy to get down and be upset and think ‘why is this happening to me?’ But there is always a flip side to that coin. Trying to remain positive is incredibly important to help stay focused on the end goal: you’re going to beat this, you’re going to get through this. Negative thoughts make it increasingly more difficult to motivate yourself to get up each day, to get out of bed, to go outside and take walks.” 
    

2. Don’t let cancer consume you 
   “Staying positive is not the only mental aspect. It’s also trying to not let cancer become your life, trying to ensure that you maintain some semblance of routine and normalcy.” He often shares the good advice he received during treatment. “Don’t let this become who you are. Don’t let cancer change who you are. This is not defining you. You are still Jeremy.” That advice helped him compartmentalize – creating room for daily walks and nightly episodes of Jeopardy, even as cancer put him on medical leave and treatments filled his schedule.  
    

3. Sustain relationships 
   He recognizes the value of maintaining relationships with his care team, even when treatment is over. “As much as I say ‘It’s been 5 years and there’s no signs of anything coming back,’ I still go to the doctor each time I have an appointment. I still do all of my checks. Because maybe it’s not testicular cancer in the future, maybe it identifies something else sooner in the future and prevents something in the future.” 
    

4. Don’t do it alone 
   “There is nothing like talking to your loved ones, but if they have never received their own diagnosis, there is a part of them that cannot really relate to what you’re going through. They can be as supportive as ever and can provide some of the best love and comfort, but they might not be able to fully relate to you. So talking to somebody who has gone through a similar diagnosis or who has had to take time off of work for a sickness or who has had to think about will they be able to have children in the future and how they navigated that, that is a piece that’s invaluable.” 

Patients and caregivers should call CHN because it will open the ability to talk to individuals who really understand. It opens up the ability to talk with individuals who have navigated a similar situation previously. Really talking to someone who can relate can provide some of the best advice, give you a question you can ask you doctor, or give you perspective.” 
 

5. Live in gratitude – and give back 
   “It’s incredibly important that once you overcome something like this, to reflect on it and see how you can make a positive impact going forward.” That reflection brought him back to CHN, which he’d discovered during his treatment, and led him to Adam, a partner at his accounting firm then serving as the Board CEO for Cancer Hope Network. They’d never interacted, but Jeremy made the volunteer version of a cold call.  
    
   “Adam was incredibly welcoming and supportive. He immediately reached out, we spoke at length and then he introduced me to the staff. I got involved with CHN first through the lens of finance and budgeting, which leverages my accounting background.  And then I wanted to do more and volunteered to help by being matched with people going through a diagnosis. I wanted to talk to people, to reach out. That desire to take a negative experience and turn it into a positive is why I’ve gotten and remained involved with Cancer Hope Network.” 

Inspired by Jeremy’s story? Have life lessons you’d like to share with others facing cancer? Consider becoming a CHN peer support mentor. Looking for hope and a little guidance? Request a peer support match with Jeremy or another cancer survivor.  

The post Eat the junk food – and take the walk.  appeared first on Cancer Hope Network.

Here, the piece of advice they’d give a friend who was newly diagnosed:  

“Take a breath, slow down. Everything is going to be fine. Most importantly, don’t make quick decisions.” – current Support Volunteer Kate 

“Honor your feelings. They will change from day to day – and with every different process or period. It’s really important to honor whatever feeling it is that you’re having at that time.”  
– Trisha, who stays positive and helpful, despite the fact she will always be in some form of treatment  

“Go for a second opinion. Talk to someone who’s been through what you’re going through.”  
– Dawn, whose focus is on the mantra “you are not alone.”  

“Verbalize your cancer journey. Whether you’re comfortable speaking about it may be one thing – but at the very least you should journal, you should write it down. It’s very therapeutic to externalize your fears, your feelings, your concerns. If you keep all of that bottled up, it’s not healthy.” 
– Perry, who believes attitude is a critical facet of recovery   

“Your cancer is your cancer. People are going to try to help. Don’t listen to the war stories. People will try to be helpful and supportive – but sometimes, it goes the other way. Breathe in positive energy and breath out the yuckkies. It costs no different to be positive.”  
– Jodi, with the best description of negative energy we’ve ever heard! 
 

“Remember what you love and keep doing it.”  
– Sarah, whose doctor shared the story of another patient who’d’ continued running and training during treatment. That example sustained Sarah through treatments, encouraging her to get outside and keep moving. 

“Cancer treatment doesn’t need to be your life. It’s part of your life. It’s also important to consider how public you want to be. Who do you want to share with?”  
– Chris – who limited the number of folks she shared her treatment with so every conversation she had wasn’t about cancer. 

“We are thrilled to take this next step in our joint efforts to provide individualized cancer support for all patients and caregivers in the East End community, no matter where they are receiving treatment,” said CHN director of programs Samantha Schrager. “This enthusiastic group of caring SBSH survivors are generously sharing their hearts and experience to create hope.” 

The group has faced several types cancer, including a variety of breast and colorectal diagnoses. They join nearly 500 of CHN’s active Support Volunteers from across the nation. Peer support mentors speak 15 languages and range in age from 19-94. Support matches (the connection between a trained volunteer and a patient or caregiver) often start with a shared diagnosis or similar treatment. They are then customized to meet the needs of each client  based on shared life experience or special circumstance.  Matches are free and confidential – and can include multiple visits.  

Request a match with a trained cancer mentor, or call our Programs Team at 877.467.3638.

The post CHN trains new class of volunteers – and finds inspiration appeared first on Cancer Hope Network.

Earlier this week, social media feeds were filled with #BaldIsBeautifulDay posts. For some, it was a chance to rock hairless pates brought on by time and genetics. But for others, it was an opportunity to reclaim their power over a disease that steals control.  

Finding power in a smooth crown is something our cancer survivor volunteers know a little bit about. They have learned firsthand that while hair loss is a cause of distress, It’s important to remember that bald is beautiful.  

A few of our amazing Support Volunteers share their own “bald is beautiful” stories in their own words.  

“I was diagnosed in June 2013 and started chemo and radiation simultaneously to shrink my exceptionally large tumor for it to be able to be surgically removed in the future. My chemo regimen included the platinum-based cisplatin, which usually causes hair loss. 

My oncologist told me that I would begin losing my hair within two weeks. When this began with clumps of hair in my hairbrush and in my hand and on my pillow in the morning, I decided to shave my head rather than witness this slow and distressing process. It was a shock being bald, but I felt more in control and my husband and stepson, who have both experienced significant male pattern baldness, were significantly amused. My mental health was once again more appropriately focused on my health and not my hair. Until the process continued and all my body hair and eyelashes fell out too! Now, even though I welcomed having smooth legs without any personal care effort, I really did not appreciate having eyelashes to coat with mascara when I wanted to look less “sick.” 

All my hair started to grow back within 6 months and came back a bit lighter in color, less thick and less curly. So, nearly 9 years later, I have not cut my hair since, except for trims. It has grown to waist length, and I enjoy it very much! If I am healthy and my hair is healthy, I plan to enjoy our remaining time together!”   – Support Volunteer Sue 

“I embraced the bald-life for both diagnoses and the requisite chemotherapy treatments. The first time, I had cut off my longer hair before the start of chemo, donated the hair to ‘Locks of Love’ and then wore a pixie cut for a few weeks. 

When I started shedding like a dog, my dear friend, who was like a brother, drove down to Dallas from Oklahoma City to shave my head. We had a party of it, going to Sally’s to buy new clippers and then sitting outside in my yard with some alternative rock as our playlist and a shot of whiskey to toast the end of the affair. 

Shaving my head was an easy decision for me since I felt I was taking control of what was happening which was important for my psyche when so much of what I was experiencing I did NOT have control of.  The 2nd time I prepared for chemo, I had the same attitude regarding my hair loss. I broke out those clippers from Sally’s and shaved my own head in my apartment bathroom. 

I really tried wearing a wig when I was bald during both treatment chapters, but truthfully, they made my head hot and overall, I felt uncomfortable. I had “casual” head wear cotton bandanas that I wore most of the time and then synthetic silk-like oversized scarfs that I wore when I had a reason to dress more formally. 

I know for some cancer chemotherapy patients, loosing hair is one of the more traumatizing aspects of treatment. I can offer that after both my cancer chemo protocols were over, my hair grew back. And getting through treatment, to the point where I was in remission, was the bigger prize. For me, being bald was a small price to pay to achieve that end goal.” –Support Volunteer Stephanie 

“For me, personally, the hair loss was never a big deal. In fact, before I began treatment, I asked my hairdresser to cut my hair short. I felt this would lessen the ordeal when I would have her shave my head. Right on que, I began noticing hair loss about 2 weeks into treatment. Nothing severe now but I knew it was coming. I made the call to have my head shaved. My husband, in support of me, shaved his as well. I told him it wasn’t necessary, but he really wanted to shave his head. He was looking forward to it, his enthusiasm lightened the mood. At one point he even sported a mohawk! In hindsight, while I told him it wasn’t necessary to do it, there was something inside of me that said, “it was nice to have a buddy walking through this with me.” My heart was full. 

Our hair stylist of many years came to our place and shaved both of our heads “on the house.” She also brought me three or four headcovers. Before she shaved my head, she placed the clippers in my hand and said, “I think you should make the first cut. You are in charge here, not cancer.”  

Of course, the tears flowed because of her kindness. After, I looked in the mirror and thought “Not so bad but whose ears are those?” My hair had always covered my ears, so it was strange to see the whole ear.” – Support Volunteer Terry 

As you can see from Sue, Stephanie, and Terry, embracing baldness is a great way to cope and remember to surround yourself with love and support. You are beautiful, bald is beautiful. National Bald is Beautiful Day was earlier this week and we celebrate and honor that beauty every day. 

Facing your own hair loss? Want to speak with a volunteer who understands the fear of eyebrows never coming back? cancerhopenetwork.org/patient-and-caregiver-support

The post National Bald is Beautiful Day appeared first on Cancer Hope Network.

Cancer in Rural Communities 

Country living has many benefits. from fresh air to a summertime full of ripe tomatoes and fresh corn, or easy access to extraordinary lakes and rivers. But when cancer arrives, small-town life can have challenges too.  

“Rural populations experience cancer disparities across the cancer control continuum from prevention and incidence, to survivorship and mortality.”³ After diagnosis “Patients in rural areas face limited access to medical and oncology providers, long travel times, and low recruitment to clinical trials, all of which affect quality of care and health outcomes.”⁴ 

Fighting Cancer in a Small Town 

Today, we meet one of the faces behind the numbers as anal cancer survivor and CHN volunteer mentor Terry shares the challenges she faced while receiving treatment far from home. .  

Terry lives in Lilliwaup, a small unincorporated community on the west shore of Hood Canal in Washington. “The population on a good day is 469. A beautiful location with access to the ocean, Olympic National Forest, and its many hiking trails. Lilliwaup is beautiful, but it is remote.” 

Terry’s story 

In April 2019, I was diagnosed with Stage 2 Anal Cancer. I was blessed to have a primary care doctor in West Olympia, WA who called me immediately after learning of the diagnosis from my colo/rectal doctor. He asked if it would be ok to refer me to the oncologist that had treated his wife’s cancer 5 years prior, as well as refer me to his neighbor and colleague who is a radiation oncologist. Both were in Olympia, WA which is located about an hour from my home. 

I felt reassured by my primary care doctor that he “had this.” Within days, I had appointments, a PET scan and was scheduled for the 6-week protocol of chemo/radiation that treats anal cancer. The first week and the fifth week I had both chemo and radiation on the same days. As the radiation oncologist put it, “this is like pouring gasoline on a fire” but it is an effective protocol and I learned I had an 80% chance of success. With that said, driving an hour each way every day for the 6-week treatment became an issue on day 3. Between the nausea and the potential for diarrhea, the hour-long winding road seemed long. The stress of having an accident in the car (vomiting or diarrhea) going to the appointment or coming back home from the appointment was very high. The windy road added to my nausea. I was basically just holding on, quiet and white knuckling it with each trip. Waiting in between the same day appointments was also difficult, just sitting in the car feeling terrible and hoping I didn’t need a bathroom. 

After three weeks of enduring the driving back and forth, my husband made the decision to book a hotel room across the street from the radiation office and a short drive to the chemo center. This was the right decision at the time. As I endured the chemo and radiation the nausea, diarrhea and blistering in my private areas began making it difficult to walk, eat, or do much at all so having the hotel right there lessened my stress in a big way. This particular hotel because of its location to the radiation center offered cancer patients low rates and the staff were welcoming, considerate and offered encouragement each day and time I slowly walked through the lobby.   

I am 3 years free of cancer now. Hallelujah! In looking back, I had the best care one hour away from home rather than two or three hours to either Seattle, WA or Portland, OR.  

Home is always where a person wants to be when we aren’t feeling well but sometimes you must get creative to get through unexpected things to make it a little easier on yourself. A good medical team, an excellent support system of family and friends, and the ability to deal with the side effects as they come up are huge in getting through cancer. While cancer certainly is a “big thing,”, I found it is a lot of the little things that help you get through it a day at a time, and sometimes it’s a minute at a time. 

Terry Kelly, Cancer Survivor/Thriver, Cancer Caregiver, Cancer Hope Network Support Volunteer and Cancer Hope Network Ambassador of Hope 

Finding help when fighting cancer in a rural setting. 

Cancer can be isolating – whether that isolation is brought on by friends who stay away because don’t know what to say or because clam beds and state parks are closer than the oncologist. Connecting with a volunteer mentor can help ease that isolation. Our Support Volunteers won’t recommend specific treatments or push city-based cancer centers, but they can help develop questions to ask your care team – wherever they are.  

Being matched can provide a free and confidential connection with “someone who doesn’t know your family and friends, who never run into you or your husband at the store.”  

To get matched with a cancer survivor or cancer caregiver mentor who understands, call 877-HOPENET or visit cancerhopenetwork.org/support. 

1. World Health Organization. (n.d.). Social Determinants of Health. World Health Organization. Retrieved September 2022, from https://www.who.int/health-topics/social-determinants-of-health#tab=tab_1  

2. Nadia Ndugga @nambinjn and Samantha Artiga @SArtiga2 Published: May 11, N. (2021, May 12). Disparities in health and health care: 5 key questions and answers. KFF. Retrieved September 2022, from https://www.kff.org/racial-equity-and-health-policy/issue-brief/disparities-in-health-and-health-care-5-key-question-and-answers/  

3. Zahnd, W. (2019, April 3). Access to cancer care in rural populations: Barriers and solutions. ASCO Daily News. Retrieved September 2022, from https://dailynews.ascopubs.org/do/10.1200/ADN.19.190161/full/  

4. Levit, Laura A., et al. “Closing the Rural Cancer Care Gap: Three Institutional Approaches.” JCO Oncology Practice, vol. 16, no. 7, July 2020, pp. 422–30, https://doi.org/10.1200/op.20.00174. 

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When I was diagnosed with BC during 2005, our girls were 9 (4^th grade) and 7 (first grade).  My biggest concern was not worrying them. I took many a phone call in my bathroom with the water running where I was sure I would have privacy.  I limited who I told before I told my kids and anyone I told about my diagnosis I included, ‘When you see me with my girls around there will be absolutely no sad faces, tears or looks of concern.’  Basically, I let people know in no uncertain terms that if they scared our kids, I’d never speak to them again. A well-meaning close friend sent me flowers after I told her of my diagnosis.  I quickly hid the flowers in the attic so the kids wouldn’t see them.  

After seeking advice on what to say to my girls, I settled on telling them only the truth and only what they could absorb.  Some people suggested I not use the word “cancer” but in the end I decided I wanted them to hear the word from me, not hear or overhear it from someone else.  Once I knew that I was having surgery and that it would be followed by chemo, I choose to tell the kids.  I didn’t have my husband there when I told them because I didn’t want to give it too much weight.  I remember it very clearly.  The girls were sitting in the kitchen having a snack in the afternoon and I told them I found out I had breast cancer and that the doctor said I would be fine and that I would need an operation and then some medicine that was going to make me feel yucky and look funny for a while.  My older daughter said, “But mommy, millions of women die each year from breast cancer.”. My reply, “Not me. I will be fine, that’s why I’m having the operation and the medicine”.  She replied, “well then, we will have to do those fundraiser walks when you are done!”  (Aside… when she was 16, we did the 39-mile Avon walk with friends). 

That night, my younger daughter got out of the shower crying and said “mommy, I wish this were just a bad dream.”  I reassured her that I would be ok and that she could ask me anything she wanted anytime.  

Once I let the girls know, I contacted their teachers to let them know (reiterating my “no sad face rule”) and asking them to please let me know if they saw any signs of distress or distraction at school. 

What worked for Robbie and her girls may be the perfect roadmap for your experience. Or it might not. Each situation, like each family and each diagnosis, has its own particulars and nuance. Which is where connecting with a Support Volunteer mentor who understands can be helpful. Our matches are always free and always confidential – and can be scheduled for a time that works best for you (even the kids are finally napping!)

To be matched with a Support Volunteer like Robbie or another mentor who’s had a similar journey parenting with cancer visit cancerhopenetwork.org/support 

Have older kids returning to school? Another great resource is a free webinar from our friends at Triage Cancer – Unpacking Cancer from the Back Pack: How to Help Kids and Teens Thrive at School When a Parent or Loved One has Cancer. 

August 24, 2022 | 10am PT | 12pm CT | 1pm ET  

Register for the webinar. 

The post Parenting with Cancer: Real Talk from a Parent  appeared first on Cancer Hope Network.

This class also brings a volunteer who survived two different cancers within only a few months and another who was back in college only a week after surgery for Germ cell ovarian cancer. Another had to travel all the way from Florida to Chicago for their treatment.  

Become a Support Volunteer

We are deeply grateful to these strong, caring mentors for their willingness to help others navigate life and cancer:  

Jen – Professional Nurse Practitioner  

Kayleigh – Astrocytoma Grade 2  

Doug – Prostate and Sinus  

Heidi – Ovarian (germ cell) 2  

Kathleen – Colon 3  

Kristen – Acute lymphoblastic leukemia 

The group joins our team of nearly 500 Support Volunteers already committed to providing peer mentoring for cancer patients and the people who love them. To connect with these, or one of our other volunteers, please call our Programs Team at 877-HOPENET (877.467.3638) or visit cancerhopenetwork.org. 

The post Meet New Class of Support Volunteers: Beating the Odds appeared first on Cancer Hope Network.

There are literally millions of reasons to celebrate: The number of cancer survivors is expected to top 22 million by 2030. New drugs and treatments being developed (The National Cancer Institute reports clinical trials at more than 2K sites) and approved (American Association of Cancer Research notes 16 new oncology drugs approved last year.)  

Behind each of these statistics and facts is a story. At Cancer Hope Network, those cancer survivor stories are at the heart of our mission – making sure that no one faces cancer alone.  

Our survivor Support Volunteers are a diverse group of folks – they’ve faced more than 80 types and subtypes of cancer (more than 98% of the cancers that will be diagnosed this year), they speak 15 languages and range from 19-94 years old. They’re parents and siblings, friends and coworkers. They’re teachers, shoemakers, and HAM radio operators.  

And they’re all focused on one thing: making cancer less isolating and scary for other patients, caregivers and survivors. Each day, during Cancer Survivor Month and throughout the year, these cancer survivors and cancer caregivers create hope by providing peer support for people facing cancer across the nation.  

Telling stories: my dream job 

Serving as Director of External Affairs for Cancer Hope Network is the job of a lifetime: I get to work with amazing colleagues (Meet our staff!) and collaborate with incredible partners across the nation (Meet Kristin, who is part of our peer support pilot program with Stanford Health Care or meet Ellen, who is part of our collaboration with the Lung Cancer Research Foundation.). 

But the very best part of my awesome job is uplifting cancer survivors by working with CHN’s nearly 500 active cancer survivor and caregiver volunteers.  

This Cancer Survivor Month, I’m especially proud to join the CHN community in celebrating some of our long-term survivor volunteers. I hope you’ll enjoy a few of my favorites from the Hopelight Spotlight archives – ordinary humans making an extraordinary difference. 

• Matched with a volunteer shortly after his treatment, tongue cancer survivor John wasn’t able to speak. His survivor volunteer helped John’s family understand what was coming. Today, John’s service as a volunteer continues – as does his dedicated work as a social worker.  

• Kelly was diagnosed with cervical cancer shortly after her wedding. Six months later, her husband was asking for a divorce. Today, she’s a happily married mother and stands ready to mentor other early-stage patients. 
   
• His kidney transplant led to a diagnosis of Non Hodgkins Lymphoma. Today, Jeff is spreading his message of love and gratitude across the world.   

• Jenn was finishing her last year in medical school and getting ready for a wedding. Then, she was diagnosed with leiomyosarcoma. Today, she’s helping her matches find hope as a CHN mentor.  “If I can make anything good out of this situation, if my experience can help others, that’s another way for cancer not to take away so much.” 
   
• It’s been several years since I first interviewed caregiver Rodney about his continent-crossing love story. But the advice he shared in that conversation has stuck with me. “Nothing prepares you for these kinds of situations. You think you are strong and you can do it for yourself. But you need a lot of help. Use the support around you.” 

This month and every month, Cancer Hope Network’s team is committed to providing hope and support for cancer survivors at any stage on their journeys: from diagnosis, through treatment and into survivorship. Click HERE or call 877.HOPENET (877.467.3638) to request a free and confidential match. 

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