2020 – May:
From the Desk Of…
Day Cross, Cancer Survivor &
Cancer Care Services Client

I’ve been teaching for over 30 years, and I love what I do. I love the energy from students, the challenges teens bring, and the resilience they have when faced with challenges. Their examples actually helped me through a challenge that came my way in 2014, my diagnosis of cancer.

The words “you’ve got cancer” are not words anyone wants to hear. From the initial disbelief to the tests to the plan of treatment to the resulting effects of surgery, chemo, radiation…cancer wants to strip you of everything you are and have. From the obvious (does my insurance cover this?) to the scary (will I survive?); from the practical (how will I continue to pay my bills?) to the emotional (am I going to lose my hair?); to the past (my mother didn’t survive this disease) to the future (I have so many things I still want to do)… each part of the cancer journey taught me about my own strengths and weaknesses, and taught me the importance of examples that have been set for me.

I had the example of my mother, who never complained publicly even when she was in pain. I had the example of my dad, who dropped everything to be with her throughout her journey. I had the example of friends who made phone calls, sent cards, and more. I had the example of doctors who were there night and day. I had the example of people who were there behind the curtains just in case. And I had my students. I had students who gave me grace when I was trying to work 3 days after chemo. I had students who told me my head looked GOOD bald (I still prefer the shaved look, actually!)  I had students who shared their stories of family-cancer experiences, and let me know they cared. I had teenage boys who sent me teenage boy jokes on chemo day that made me laugh. (Yes, laugh. They WERE naughty, but you can’t help but laugh).

And then there are the organizations that are there to support you such as Cuisine for Healing, the Texas Oncology network, and Cancer Care Services. Cancer Care Services has been a lifeline for friends going through this,  providing ongoing assistance for those who struggle, and also offering programs for youth. I have participated in National Cancer Survivors Day – a huge party designed to get people’s minds off the reality of cancer and on the reality of LIVING.

It was someone at Cancer Care Services who explained to me that 1 day past diagnosis, I was and am a survivor. The journey ahead wasn’t going to be pleasant (she explained) but it didn’t matter; I was a survivor.  I know that I can pick up the phone today and ask for help, and they will be there in whatever way they can. Cancer Care Services helps you deal with the cancer; they offer care, and they provide or locate services for all who ask.

If you look at the CCS calendar, there is everything; faith activities, massage, survivor resources, kid and youth resources, cooking, movies; camps for children and youth, you name it; there is support.

A final thought. While I was walking the halls after radiation (day after day after day after day) I had the opportunity to be blessed by artwork created by students from a local school. This year I had an opportunity to support that aspect of the CCS program by bidding on and winning two pieces of artwork that had personal and special meaning to me in my life journey. Those pieces will grace my walls at school as a daily reminder of CCS and people who care.

There is beauty even in cancer; I learned life is a bit more precious when you know you’ve got examples and support in place, and when you get up each day a survivor.

 

2020 – April:
From the Desk Of…
Erinn Anderson, LMSW
CCS Clinic Social Worker

One Story about Coping with Cancer in the Time of COVID-19

My mom, who is also one of my best friends, a phenomenal grandmother to my children, and caregiver to her own 95-year-old mother was diagnosed with cancer in December 2019.  She had a successful surgery in January and was encouraged to take chemo for long term protection from recurrent cancer.  Her first chemo was a little bumpy, but we got through it.  I had a plan for her to “do better” the next chemo, even though I didn’t share that plan with her.   I planned to provide all the cooked meals, housework, etc. so my mom could focus on recovering and return to “normal” as soon as possible.

She recently had chemo on a Tuesday and she felt increasingly bad all the way up to Sunday night, despite my “plan” that was in action.  Sunday night, she called me because her symptoms were becoming unbearable.  We called her oncologist that same night, who advised she push a large amount of fluids because her symptoms sounded like significant dehydration.  Unfortunately, the next morning the symptoms (fast pulse, really low blood pressure, chest and arm pain) continued so we saw her oncologist who sent us across the street to the hospital emergency room.  I drove my mom to the ER, dropped her at the curb and proceeded to park the car.  When I went to join her, I literally wasn’t allowed to go past the reception desk at the ER!  The lobby had been converted to a COVID-19 triage area, there was a security guard stationed at the entrance, and a nursing shaking her head in apology.   My mom and I looked at each other in disbelief.  She gathered a few belongings and headed down the hall alone.  I walked back to the parking lot and cried, my mind racing with all the “what ifs.” 

She spent most of the day in the emergency department having multiple tests done.  None of the staff could provide updates over the phone due to HIPAA, but one finally told my mother to call us on her cell phone, which wasn’t receiving the signal from outside calls.

Ultimately, my mom was admitted to the hospital Monday and discharged on Wednesday – with NO VISITORS of any kind during that time.  Thankfully she was lucid, awake, and capable of advocating for herself because she was alone the entire time. All of the updates on her test results and her status came from phone calls she made to me.  Her doctor graciously took my mom an overnight bag with clothes, a phone charger and some snacks we sent. And we talked on the phone. A lot. She spoke about getting herself out of bed to get snacks and water, a task caregivers eagerly jump up to do.  She spoke to her cardiologist and every other specialist that visited with her alone, and miraculously remembered the important points of the conversations. 

I feel so awful for all of the patients and caregivers who didn’t have the advantages we did.  As my husband said, this virus is getting into all the nooks and crannies. 

 

Tell us how COVID-19 is impacting you or someone you love who has cancer by clicking on this link:
Share Your COVID-19 Cancer Story

 

 

2020 – March:
From the Desk Of…
Tamika Chambers, CCS Financial Navigator

Human error happens all the time. We know that. But it can seem to occur frequently within the context of medical billing and coding, and when it does, knowing the appropriate questions to ask insurance providers is key. Just consider this example from a few months ago, when a local cancer survivor became the first client to utilize Cancer Care Services’ new Financial Navigation program.

Like many others, this client’s medical expenses had piled up quickly, creating too much of a burden to juggle single-handedly. We sat down together and, after some work, devised a comprehensive path to get him/her over the top and on the other side of this mountain of financial stress. Together, we labored through more than 200 medical claims. Among them, we identified 67 denied claims that we thought warranted a closer look.

Over the course of two weeks and countless calls to insurance representatives, we worked to understand the client’s insurance company’s Explanation of Benefits statements. I asked why each claim was processed in the manner it was, and I shared the answers with the client, to give him/her a clearer understanding of his/her insurance coverage.

During this extensive evaluation period, we discovered one $1,000 claim that had been denied as “not medically necessary”.  But in fact, an identical claim had been processed – and paid – weeks later by the same insurance company. Investigation into the initial, denied claim revealed that it had simply been coded incorrectly and was, after all, a covered benefit under the client’s policy. The claim was reprocessed and the client’s bill was adjusted accordingly.

In addition to reviewing current insurance claims, the financial navigation process dealt with older medical debt that had already been sent to collections, too. Debt validation letters were sent (to verify the details of what is owed) and, as a variety of disputed debts were resolved, the client’s FICO score improved. What’s more:  two medical debts tallying greater than $800 were wiped clean!

Currently, work continues to reduce his/her residual debt, creating the opportunity for him/her to look toward and begin the next phase of our plan: saving for the future. This is a huge victory for our client! 

An improved credit score, deletion of two medical debts and getting a claim reprocessed by him/her insurance carrier represent so much more than an umbrella, giving him/her shelter from the down pour of financial toxicity, it’s more like the sun has come out on a brighter day. Together, we weathered the storm.

2020 – February:
From the Desk Of…
Joshua McClatchy
Graduate Student, former CCS social work intern,
avid hiker, and – survivor

Would you like to feel more at peace?

Although I have not experienced a cancer diagnosis, I do know what it’s like to have a condition that can be challenging to manage: bipolar disorder. Bipolar 1 to be exact. When our health is at risk, the situation can seem overwhelming and day to day, it can be difficult to find a sense of peace, even when you’re supported by caregivers and a broad support system.

Speaking of caregivers, this post is for them to read, too, as well as patients.

The important thing to keep in mind is to find what works for you. You may hear lots of well-meaning recommendations, but they won’t all sound good for you. The best suggestions for finding peace in your day may be the simplest – like taking time to sit and enjoy the sunshine. There is no need to overdue.

If you have access to a patio – at home or even at a restaurant – spending time there daily can be truly beneficial. I try for a 2 hour outing at least once a week and the health benefits I know I receive from hikes in the park include mental clarity, better endurance, and better sleep, along with improved heart health.

And when you make it a habit to spend time outside, in nature and green space, the health benefits really start to add up. These include reduced chance of cardiovascular disease, increased sleep duration, and better control of type 2 diabetes.

Mentally, connecting with nature can renew your spirit, improve your focus, and give you a more peaceful perspective.

Some of you may be wondering how you can do this if you’re experiencing complications of treatment or if money is tight. That is okay. Cancer fighters don’t have to take a two-week trip to Alaska to connect with nature. Tarrant Country has numerous parks that provide walking trails that are free. One that I highly recommend is River Legacy Park, a nature preserve situated in north Arlington.  This lovely park has paved trails and decent shade. Invite a friend to share the experience. Take in the sounds of birds chirping here and there and listen to the gentle flow of the Trinity River. If you look closely, you may even see a Great Horned Owl! You can find River Legacy Park close to the intersection of I-30 and Cooper Street.

If walking in a park isn’t your thing, how about a scenic drive? The possibilities are numerous in the areas just outside of Ft. Worth. One that I encourage you to take is off of HWY 180 in Parker County. HWY 180 can be found intersecting with Interstate 20 in Weatherford. Not only will this drive take you through the charming downtown area, it meanders through fields that lead to the imaginative and sprawling botanical gardens known as Clark Gardens. While Clark Gardens isn’t free, it can be affordable. Entrance fees are $9 for adults and $5 for children. More information can be found here: https://www.clarkgardens.org

If you don’t want to make it to the gardens, no problem. This drive is a superb spot for a variety of wildflowers also, and wildflower season is right around the corner!”

 

2020 – January:
From the Desk Of…
James Earl, MPA, LBSW
Cancer Care Services Program Director

What does “legacy” mean to you?  How do we define it? How do we quantify it? I don’t believe any of us truly have the answer to these questions since legacies typically are defined at the end of a career or journey, or posthumously. 

However, what if leaving our legacy could mean something more immediate? What if we defined it as “witnessing our efforts manifest in others”? In this context, we actively build our legacy, one day at a time, every day.

This concept was unknown to me until I attended a Diversity, Equity, and Inclusion workshop late last year. There, the idea of a legacy –  my legacy –  would be redefined. 

The expression “passing the torch” references ancient Greek relay races, in which a lighted torch was passed from one runner to the next. In modern days, it typically refers to a person transferring responsibilities or leadership to the next person or generation. But a “handoff” implies that only one torch can burn at any given time. I’ve always thought of it this way, too. But at this workshop, one of the speakers stated that she “wasn’t ‘passing the torch’ because, instead, she’s lighting more torches every day.”

What a great lesson that was: you don’t have to retire, die, or stop doing something to build a legacy that will last for years after you’re done. Instead, why not empower yourself to live your legacy today AND light the torch for others to do the same? I will.

 

2019 – December:
From the Desk Of…
Annie Presley, LCSW, OSW-C
Cancer Care Services Counselor and Cancer Survivor

How do I begin to describe what Cancer Care Services means to me? Please allow me to start from the beginning.

My journey with Cancer Care Services started when I was a Master of Social Work Intern, 15 years ago. After graduating and obtaining my Masters level license, I was offered a position. I was thrilled to begin working with cancer patients, survivors and their families as a cancer navigator – especially because I was working in a field very close to my heart. Not only did I have a brother who died from esophageal cancer in 1999, but I had battled breast cancer just two years prior to being hired at Cancer Care Services.

Then, during my first two months at Cancer Care Services, I started experiencing physical issues that were troubling. I went to my oncologist, and tests revealed Non-Hodgkin’s Lymphoma. I was hospitalized and began chemo right away. My supervisor kindly advocated for me to remain employed at Cancer Care Services, and even hired a social worker on a temporary basis to hold my position while I received treatment.

As someone who has experienced multiple cancer diagnoses, and who is now a survivor, I know all too well the financial burdens and family stressors that cancer causes. Despite cancer, I was able to continue my education and am now the full-time counselor for Cancer Care Services! Working here has been a calling since the beginning.

I have been blessed to know so many wonderful clients and friends throughout my 15-year career. I am proud to work for an agency that has been a part of Fort Worth for 73 years, and I know Cancer Care Services will continue this awesome work in Tarrant County for many years to come.

 

2019 – NOVEMBER:
From the Desk Of…
Julie Hatch Fairley, CCS Donor

“Yarn Heals”

My 54-year-old seemingly healthy mom who never smoked a day in her life died of cancer of undiagnosed origin in only 18 weeks. I was only 30 years old, and I was broken.

Mom used to say “pick yourself up by your bra straps, JulieSue.”
So I did, and I tried to move on.

I bought a house.
I advanced my career.
Over time, life got better and I was living the dream once again.
So why did my heart feel so very heavy?

A counselor soon asked, “What did I used to do as a child that brought me joy?” The answer was easy, “Dig in the dirt and play with yarn.”

On the spot, I received a written “prescription” to garden or knit one hour a day. I took my homework seriously and jumped in with both feet with a lofty goal to immediately make socks. Now for knitters, that’s not necessarily a starter project – hence the pointy toes pictured here.

I began to knit … and knit … and knit … and slowly I began to heal.

After miles and miles of yarn, my soul began to breathe.

Today, I am fortunate to be able to share the healing power of yarn with others.

In January, we began a monthly meet-up at Cancer Care Services called “Healing Hands” – a designated time when cancer patients, clients and caregivers can join me & other fiber friends for fellowship (and free instruction as needed) over yarn. Our group has varied in size each month, but one thing remains constant: when picking up yarn, people put down their phones … and their guard.

Patients set aside their treatment side effects.
Survivors feel hopeful.
Caregivers slowly unwind.
We all begin to think of something other than cancer for a few sacred hours.

It is now my honor to welcome this community to JuJu Knits, a new, local yarn store located at 552 Lipscomb, just a few blocks northeast of Cancer Care Services’ location on Henderson near Pennsylvania.

Every week, on Wednesdays from 5:30 to 8 p.m,. JuJu Knits hosts a fiber fellowship. While the first Wednesday of each month is designated especially for Cancer Care clients and their friends or family, any CCS client is always welcome to join me for fiber fun. We keep at the ready an ongoing stash of donated yarn, needles, hooks & other supplies for those who wish to learn knitting or crochet but may not have the materials to get started.

The binding community of JuJu Knits is also raising funds for the CCS Holiday Gas Card Drive through the sale of handmade ornaments & our yarn winding station.

I believe down to the toes of my pointy socks that yarn really can help one heal.

Thank you for the privilege of allowing me to share my love of yarn with Cancer Care Services.

With peace, love & yarn,

JuJu

2019 – OCTOBER:
From the Desk Of…
Laura Misuk, MPA, Director of Grants & Advocacy

In 2007, Texas voters overwhelmingly approved a constitutional amendment creating and funding the Cancer Prevention and Research Institute of Texas (CPRIT). It is the largest state-based cancer research and prevention effort in the United States. The approval authorized the state of Texas to issue $3 billion in bonds specifically intended to do two things: expedite innovation in cancer research and product development, and create access to prevention programs in all 254 counties in Texas.

All CPRIT-funded research is conducted in Texas by Texas-based scientists. Since 2010, CPRIT has awarded 1,447 grants; awardees include 108 academic institutions, non-profit organizations, and private companies in virtually all regions of the state. While the work generated by these funds is notable in a myriad of ways, the outcome of one in particular gained international recognition. The 2018 Nobel Prize in Physiology or Medicine was awarded to a CPRIT-funded researcher: Dr. Jim Allison, who launched an effective new way to attack cancer by treating the immune system, rather than the tumor. Allison is the first M.D. Anderson (Houston) scientist to receive this award. Without CPRIT funding, the progress of his research would have surely taken a vastly different course and, quite likely, timeline.

CPRIT funds a complex network of research, product development, and prevention initiatives that have measurable impact. However, the existing government funding for CPRIT is at the end of its cycle. If the work is to continue, new funding must be approved and appropriated by the state legislature.

Earlier in 2019 a team from Cancer Care Services joined the American Cancer Society and other advocates in person at the Capitol in Austin to speak directly with lawmakers and their staff, urging them to put reauthorization of CPRIT funding on the November 2019 ballot. Fortunately, the legislation to put CPRIT on the ballot passed overwhelmingly.

Now, it is up to the voters of Texas to ensure that this significant work continues by approving continued funding for CPRIT as specified in Proposition 6. (Read more about it at: https://ballotpedia.org/Texas_Proposition_6,_Cancer_Prevention_and_Research_Institute_Bonds_Amendment_(2019) ).

Cancer Care Services urges you to vote yes on this important measure. Texas must continue to fund the prevention activities that are identifying cancer early in its progress and the research that is leading to new treatments.

Register to vote before October 7, 2019: https://www.vote.org/register-to-vote/texas/

Early voting will run October 21- November 1 and absentee voting will close on October 25th. Election Day is Tuesday, November 5, 2019.

For a listing of Tarrant county polling places: https://www.tarrantcounty.com/en/elections/Upcoming-Election-Information/Election-Day-Schedule-Locations-and-Map.html

To request an absentee ballot: https://www.vote.org/absentee-ballot/texas/

 

2019 – SEPTEMBER:
From the Desk Of…
Cameron Brown, BSSW, D.Min., Retired Firefighter and Cancer Care Services
Board Member

Cancer is a thief. It sneaks upon us and steals our loved ones, friends, and coworkers. For firefighters, it robs us of our dignity, strength, identity, careers, and lives. The International Association of Firefighters (IAFF) says that cancer is now the leading cause of death among firefighters.

Firefighters are typically mentally, emotionally, and physically strong. They are often identified as tactical athletes whose profession demands stamina, ruggedness, and grit. So what happens when one is diagnosed with cancer? The “C” word is a direct blow to one’s ego and sense of control.  Feelings of helplessness and powerlessness come flooding into one’s life. The roles shift from first responder, primary provider and caregiver to the one needing help.  

One retired firefighter recently told me that he was so traumatized by his cancer diagnosis and treatment regimen that he feels like he has post-traumatic stress disorder.  Before diagnosis, he worked at a very busy fire station, was confident in his competence, and took great pride in his work. He described the firefighters at his station as “family” because together they prepared and ate meals, worked out, and responded to emergency medical calls and fires. When he was diagnosed, he was embarrassed and did not want to tell anyone. He feared being perceived as weak, vulnerable, and unable to perform his job. Consequently, he suffered in silence, isolated himself while this disease robbed him of his relationships, health, confidence, and career. 

He described many losses in his life such as loss of physical ability to do his job, loss of relationship with his fellow firefighters, and loss of identity as rescuer. He identifies himself as someone who was born to do this job and this is the only profession he ever wanted to do. During and after treatment, he felt like a “has been” because physically he could no longer fight fires. Ironically, fighting fires (the thing he loved to do) is probably the culprit for his cancer due to exposure to the products of combustion. (Firefighters have a greater risk of being diagnosed with cancer and an even greater risk of dying from the disease compared to the general populations of the US, according to the National Institute for Occupational Safety and Health, NIOSH.) 

The late Stuart Scott (ESPN sportscaster and often-quoted recipient of the Jimmy V Award at the 2014 ESPY Awards) said, “You beat cancer by how you live, why you live, and the manner in which you live.”

Like many, this firefighter openly questioned why he got cancer:  he ate a healthy diet, worked out, was kind, and always willing to help others.  His course of therapy included many months of surgeries, chemotherapy, and radiation. He described living in a lonely world void of companionship. For a while, he lost his purpose in life because he was no longer a physically fit firefighter. His drive to help others was significantly diminished and although he had many family members, friends, and co-workers willing to help, he was unable to accept support.  The thoughts about his cancer and the end to his firefighting career became all-consuming. Fortunately, a turning point came.

The turning point for him was the day when he was no longer embarrassed to ask for help.  He realized his life was spinning out of control and he sought counseling.

Because of the nature of the work: providing help in times of crisis, the fire service is a sub-culture with a unique perspective and unfamiliar needs. I am proud that Cancer Care Services (CCS) has chosen to partner with local fire departments to help firefighters and their families navigate the complex system of care called into action after diagnosis. As part of the Fort Worth Firefighters Cancer Focus Group, CCS has helped coordinate a symposium planned for September 6, 2019. Understanding that the fire service is a unique community that wants to take care of itself so it can care for others, the symposium will bring community resources together to educate members of the fire service family on the latest developments in prevention, detection, diagnosis, and treatment.  

Further, CCS provides professional counseling and cancer case management to firefighters and their families. It is my hope, and Cancer Care’s, that one day soon CCS’ professional team will include a Cancer Navigator specializing in helping first responders and their families answer a different type of emergency call.

Today, the retired firefighter I described earlier is a courageous cancer warrior and survivor. For him, what matters is not what he lost but what he has gained. Firefighters – like so many going through cancer treatment – are brave and resilient, often because of support and insight gained from organizations like Cancer Care Services.

Cancer Care Services empowers clients to regain their dignity, sense of identity, and control. When they feel supported, cancer can’t define nor steal an individual’s strength of character. Cancer may be a thief but it cannot “cripple love, shatter hope . . . [or] steal eternal life.”

2019 – AUGUST:
From the Front Desk
at Cancer Care Services

There’s no way to know exactly what brings a person to our door before they arrive. But there is one way to let anyone struggling with cancer know they’ve come to a place where they will be welcomed and respected, and that is to greet them with a smile.

Without necessarily instructing them to do so, the many volunteers who staff our reception desk throughout the week each have developed this same standard procedure – and while it may seem common sense, the satisfaction they derive from the simplest of gestures is immense. Says one, “In the world we live in, too many people are plugged into their phone, tablet, and themselves. Less and less are people plugged into others and what is going on around them. When clients come in I always greet them with a smile and make a personal comment to them. I try to make them feel special and important when they walk in the door at CCS. I was in the same boat in 2013-14, going through cancer myself, and can relate to much of what the clients I see coming in are dealing with. You never know when just a simple thing like that can brighten someone’s otherwise dark day. Sometimes people just need someone to take the time to look up, see them, and listen for a minute.” —Nancy

Or, when the phone rings, “I am the first voice that a client will hear when they finally have time to pick up the phone and call. I want to make sure that I am as helpful and happy for them, to make their experience at CCS as positive as possible from the very first contact.” —Jackie

These volunteers don’t take anything for granted. Some even tailor their wardrobe to suit the occasion, “I try to present a cheerful welcome as people come in the door because I know from experience that sometimes it can be little things like bright colors (rather than medical scrubs) that can add up to make a big difference in someone’s otherwise difficult day.” —Gena

Of course, CCS clients come in all ages, ethnicities, genders – from many different backgrounds but all with cancer in common. Just like our clients, our volunteers come from a variety of backgrounds and experiences: many are cancer survivors or caregivers; others are former healthcare professionals. Not all of them, however, understood the breadth and depth of what Cancer Care Services makes available to our community until they started spending time in the building.

“CCS provides such a variety of support – for all; CCS fills in some of the gaps that are lacking in our healthcare system.” —Marilyn

“I learned that the organization supports caregivers and survivors as well as patients. I don’t think caregivers always know that they need support too so the fact that CCS works to make people aware of their programs is so important.” —Gena

“I was really touched to learn how CCS supports children who are dealing with cancer in their lives, in their homes with play therapy and other events specifically geared toward children and their family units.” —Gena

“Cancer can strike anyone, in any walk of life, at any time in their life. I have learned that once you “beat” cancer, there are still so many mental and physical and financial challenges that need to be dealt with for many years after. I am so grateful to be able to share the knowledge that CCS exists and is here to help people of all types.” Jackie

“As a volunteer, I have learned a lot more about how CCS works – more than I knew when I was working as an RN Case Manager making referrals for my patients. I wish more local Case Managers and Social Workers could spend just a few hours in the CCS building to better understand how the agency can help lighten the load for many; it really is an oasis in the midst of dysfunction in the healthcare system.” —Marilyn

In some instances, laughter may be the best medicine, but around the offices of Cancer Care Services, a smile is a powerful tool we use on a daily basis. It’s part of our culture because it serves as an outward expression of hope, comfort, and connection between human beings finding their way.

“I love helping connect clients to resources they need through our social work team but I also really love my one on one time with them at the desk, too. I was lucky one day to have a set of donated Texas Rangers baseball tickets to give to a family for free; they were so surprised and cried tears of happiness at the opportunity to spend some time away from doctors and simply focus on being a family and having fun. I still smile when I think about it.” —Jocelyn Calderon, CCS Office Coordinator

We shall never know all the good that a simple smile can do.
– Mother Teresa

2019 – JULY:
From the Desk of…
Melanie Wilson
, President & CEO
and Susan Shields
, Board Chair, MBA, RN, NE-BC, CCAP-I.

According to many who work in oncology, immunotherapy “is the future” of cancer care. The American Society of Clinical Oncology defines immunotherapy (also called biologic therapy) as a type of cancer treatment that boosts the body’s natural defenses to fight cancer.

But sadly, the miracle is often unattainable because it can be unaffordable, unless the patient is fortunate enough to have an insurer willing to approve costly coverage. For instance, the well-known drug Keytruda (pembrolizumab) is priced at $4,800 per dose (100mg/4mL vial). The drug is typically administered every 3 weeks, for a period as long as two years, depending upon the patient’s response and other conditions. The cost for treatment quickly adds up to tens of thousands of dollars!

While we sadly cannot offer a solution that would make these new cancer therapies affordable for all, we feel strongly that we cannot lose sight of those who are impacted by the disease today, here and now, in our community. While there are hundreds upon hundreds of research entities across the nation planning new strategies in the war against cancer, the battle on the front line rages on. You likely know someone saying, “I’ve got it – now, today. What do I do?”

Cancer Care Services can provide a safety net (for those who qualify for financial assistance), a cushion to soften the blow when people find themselves up against this devastating disease. Even with health insurance, it’s all too common to hear stories of entire life savings being spent on the cost of treatment. (The number one cause of personal bankruptcy is medical debt.) And you may be surprised to know that Cancer Care Services provides navigation services for everyone, including people just like you and me in the middle class.

The truth of the matter is that a cancer diagnosis can throw anyone into sudden, unexpected, and debilitating financial jeopardy. The financial stress of cancer is proven to increase the risk of death in cancer patients by more than 70%. That “financial toxicity” leads to patients worrying that, even if they survive, they’ll have nothing. Or worse yet, the longer they survive, the less their family will have. These are deep, dark fears that, honestly, you can help Cancer Care Services alleviate. Our team of social workers provide expert guidance that is difficult to find in an out-of-hospital setting.

So while researchers are doing amazing things in the lab, we are proud to be doing some amazing things right here in Fort Worth. We invite you to come take a tour of our offices and meet some of the social workers and clients who can tell you their real life stories. Because, reducing the devastating impact of cancer on an individual’s life can have a healing effect as profound as any miracle drug.

2019 – JUNE:
From the Desk of…
Megan Clifton, Client Connection Manager &
Cancer Survivor 

When you are a small town coach’s kid, well, you are viewed just a little bit differently.  Sometimes in a good light, but if the team’s not having a winning football season, you may be seen in a not so good light!  This is how I grew up: with the small town spotlight always on my family, so when my family got THAT call from the doctor… not only did our lives change forever, but the spotlight was there again, too. But this time in a much different form.

When I was just 13 years old, I was diagnosed with a rare form of pediatric cancer called Rhabdomysarcoma.  When the doctors “caught it”, the odds were stacked against me.  The tumor was big, and time was of the essence.  Diagnosis on a Friday, in the operating room on a Monday.  It was scary.  It was emotional.  It was real. 

Once the news spread, in my tiny hometown of Comanche, Texas, the LOVE poured in.  That same spotlight that once shined on my dad’s wins and losses, now shined on his 13 year old daughter.  It felt like every inch of Texas was praying for me, and it was so overwhelmingly amazing! 

I’ll never forget my first thoughts when my parents and I received that dreaded phone call that no one wants to hear.  When my parents sat me down to say “the tumor is malignant”, I jumped up from my seat and ran outside to the backyard.  My dad, trailing behind me, scooped me up in his arms and said it’s going to be ok, and we are going to get through this. My response to that took him by surprise.

I looked up at my dad and asked, “Does this mean I won’t get to run track this season?” You see, when you are 13, you aren’t thinking about life or death, you’re simply thinking about how this is going to affect your social life. (We’re talking about the oh-so-awkward, preteen/teenage years, after all.) 

I really needed to know at that moment if my track season was coming to an end.  Needless to say, my parents had other, bigger concerns. Soon, we would be meeting with the oncologist. My amazing parents dealt with the hard stuff, the tough questions like what is chemo going to do to her body, or what was the percentage of me actually making it through the next 10 months.  Meanwhile, I remember being scared of what my friends were going to think.  No, really. The first thing I asked my doctor was, “Am I going to lose my hair?“ I was absolutely terrified that I was going to be “that” kid in eighth grade – the weird, bald-headed kid.  It was nearly impossible for me to imagine anything worse than that. 

Chemotherapy was hard.  Oh so very hard.  Hair loss, nausea, weight gain from steroids – my whole appearance changed in the blink of an eye.  I was sick, all the time.  At the beginning, my chemo treatments were outpatient, so I would always get to come home afterwards.  However, this was also hard because my low blood counts meant my friends weren’t allowed to visit; my very weak body would not be able to fight off the infection. 

I was a sad teenager, a lot.  I felt isolated and could not figure out why this was happening to me.  Again, thank goodness for my amazing parents and, add to that, two amazing big sisters.  And a town that was wrapping me up in prayers, good thoughts, and hugs – even though from a distance. 

After six months of chemo, my oncologist did another biopsy.  Unfortunately, we found that the chemotherapy was not working, and the cancer cells were about to start spreading.  At this point my doctors had to get aggressive with my treatment.  This meant much stronger chemo and dreaded radiation.  Trying to explain this to my friends was no easy task.  I didn’t understand it any better than they did.  And, all I could think about was I am about to start High School bald-headed and pale.  It was the worst.  I cried a lot.  Thank goodness for prayer and my momma! 

It was time to start radiation.  I have never been so scared in my entire life!  I was about to have radiation beads implanted into my body, and I would have to lay flat on my back for a week straight, not being able to move, with tubes and machines attached to my body as well.  No one was allowed in my room for more than a short period of time, and they had to stand behind a shield in order to see me. An experience like that is something you can never forget, no matter how old you are when you experience it, 13 or 30 or any age.   

My oncology nurses had to have some very serious conversations with me about how this radiation was going to affect my body in the future.  Conversations about my body, which at 14 now was already changing because of puberty and adolescence, changing even more because of radiation and cancer made me so confused about life.  I will say everyone, and I mean everyone on my medical team was so kind, caring, thoughtful, mindful, and, encouraging, and would do whatever they could to try and put a smile on my face. 

Following my week-long radiation treatment, I began a six month-long chemo regimen.  For this round, instead of coming home, I would have to stay in the hospital for days at a time while my chemo slow-dripped.  Again, “sick as a dog” was an understatement.  I thought those 6 months were never going to end.  I began my freshman year of high school bald, rail thin, sick, and uncomfortable.  But I wasn’t the only one in my small town with an unexpected new look.  I started high school the same way all the freshman boys did – because they shaved their heads! All 30 of them!  Yep, the boys of my class, who were probably pretty nervous about starting high school too, shaved their heads to support me.  Their sweet gesture made entering those double doors that day a little less frightening. 

Eventually, the very long six months of chemo came to an end and one, final biopsy concluded that I was cancer free.  That first year of being a high schooler, I felt it all: happy, sad, scared, anxious, all while trying to navigate cancer as an adolescent.  Through it all, the support that my family and I received… To this day, I cannot talk about it without getting teary-eyed.  It meant so much to my survival. From family and friends, to people I didn’t even know who were praying for me, the love and support I received was unconditional.  This also came in the form of so many support services and nonprofits. 

It is because of all the support I received that I have chosen to work in a field where I can give back some of what I’ve been given.  It is my goal to help, support, and reach out to every cancer patient that comes across my path!  I live to tell my story because – at any age – life isn’t always beautiful, but it is a beautiful ride!    

2019 – MAY:
From the Desk of…
Shandreka, Caregiver

In August of 2016, I had recently lost my job and money was extremely tight. All of my energy was focused on finding a new job when my husband, Michale, was diagnosed with stage 4 Squamous Cell Carcinoma of the head and neck. We had no idea what to do or where to go for help.  Like so many who hear a diagnosis like this, we were afraid that we couldn’t get the care needed for my husband to fight and survive this. Fortunately, he still had his insurance and we were able to see an oncologist. But I still worried what was ahead, how many appointments, and medications, and treatments?

At our first appointment with the oncologist, the staff gave me a stack of paper – pages and pages to fill out and sign. The last form asked if I needed assistance with information, guidance, or any financial help. Of course my first thought was that there was no way that we would get any help but I filled it out anyway and gave it back. I was so surprised when the very next day I got a call from Margaritta, a staff social worker at Cancer Care Services. (She probably doesn’t know this, but right before she called, I was crying alone in my room – not knowing if I was going to lose my mind and my husband of 20 years… I was feeling so much stress.) One of the first things she said to me was to ask if I was ok. I thought that was a little weird because I wasn’t the one with cancer, and because no one else had asked me how I was doing. Somehow, though, I think she knew I wasn’t ok and she started feeding me with information. She got me in touch with people like Caryn, one of their Registered Dietitians and Certified Specialists in Oncology Nutrition who would help me understand the special nutrition needs Michale would have and what I should do to help him stay nourished.

And then – help started flooding in from everywhere! There was great help with the medical side of things for Michale and me, and there were things to help us cope with the emotional side of things, too. We got to do things together as a couple and as a family– which was really important to me because I wasn’t just a wife and caregiver; I was still a mother of two also! From going to baseball games and couple dinners, to meeting new friends who could relate to us because they’d been on a cancer journey too, we were able to maintain a little bit of normal in our homelife.

Because of the help and information we received through Cancer Care Services, our family survived this. Thank you, Cancer Care Services!

2019 – APRIL:
From the Desk of…
The CCS Social Work Team

A day in the life of a social worker at Cancer Care Services is filled with many different roles and responsibilities. No two days are exactly alike, but each day we are focused on providing care and support to the people we are here to serve. While our team of clinic-based social workers operate within the parameters of a specific, off-site clinic setting, the social workers in our building on N. Henderson Street serve a broad spectrum of individuals from our community who have been affected by cancer.

Our community social workers typically spend the first few moments in the building preparing for the day. Everyone has their own process, but in addition to tending to basic administrative chores, this time is meant to put the social worker in a healthy state of mind to connect with clients.  Sometimes social workers even jam out to action movie soundtracks, but those are a rare breed.

Prep time serves another practical purpose: we don’t begin reaching out to clients until after 9:00 AM, in order to give patients sufficient time to wake and prepare for whatever their day may hold. These calls continue conversations about previously identified needs or concerns; we want clients to feel they are kept current, and not like they are having to wait on responses to questions. After every call completed on behalf of the patient, the social worker documents the exchange with a note to the client’s file. Detailed documentation is an essential element of professional social work.

Typically, the social worker will then move on to Intake phone calls. This is the first step in bringing a client on-board to receive services from our agency. Many routine questions are asked in order to assess the client’s physical, mental, and even financial condition and begin to formulate a care plan for them. Not surprisingly, many notes are added to the file. Altogether, this process takes roughly an hour – for each new client.

Once Intake is completed, then the social worker schedules a time to meet the new client in person, preferably, to discuss in more detail the needs of the client as well as those of his or her entire household. At Cancer Care Services, the cancer patient is not the social worker’s only type of client. The husband, wife, child, parent, and any caregiver – all can be clients of the social worker. The social worker will spend time throughout their day researching and attempting to connect these people with the resources they need – whether it’s financial help, counseling, food assistance, proper treatment, prescription medications, housing, car repairs, social connections, medical supplies, nutrition supplements, burial assistance, and sometimes even mattresses. Basically, anything that is a concern or need of the cancer patient’s household becomes a priority of the social worker.

The social worker will also spend time throughout the day receiving phone calls from dietitians, nurses, and other medical staff. These medical professionals are close with their cancer patients and are a key link in the chain of caring for and providing assistance to our clients. Each one of these professionals works within the guidelines of the Healthcare Insurance Portability and Accountability Act (HIPPA), which keeps patient information confidential. Social workers are constantly sending and receiving order forms to provide medical assistance for the patient in these cases. For instance, if a patient needs colostomy supplies, then a nurse will send over an order form and the social worker then searches online for the specific supplies and presents his/her selections to a supervisor for approval.

The (national) recommended caseload for a social worker is 85-100 clients. The members of the social work team at Cancer Care Services typically carry caseloads a good bit heavier, with many clients receiving the full range of services offered, each of which the social worker coordinates. The social workers at Cancer Care Services accept any cancer patient no matter what phase of treatment – or survivorship – they are in. We know any help that can be provided goes a long way for our patients and we are proud to play a vital part in that process.

2019 – MARCH:
From the Desk of…
Karen Garcia, CCS Board Member and Caregiver

Cancer Care Services was a tremendous resource when my mom was diagnosed cancer. She was 40 years old and had stage 2 breast cancer. Prior to her diagnosis there was no history of cancer in her family. When you hear the word cancer you immediately have a ton of questions. How much time is left? Is it treatable? What are my options? What will it cost? We needed some guidance on how to navigate treatment. My knowledge was so limited about cancer and treatments and even how to comfort her through this scary time. I was able to research online and found a Spanish support group at Cancer Care that could help answer some questions. At first my mom refused to attend the support group because she thought it would be sad and depressing. It was actually the opposite. My mom had a double mastectomy and shortly prior to attending the first support group meeting at Cancer Care. The women and men in the meeting provided the comfort and encouragement she needed. She was able to hear testimonies from survivors and share her concerns with people who completely understood. Cancer Care offered my mom the kind of emotional support that no one else could. That’s not all Cancer Care Services did for her!

The financial burden that cancer adds to a family that is already struggling financially is stressful and almost unbearable. Cancer Care was able to help with my mom’s medical treatment expenses such as the Cobra premiums and co-pays for doctor’s visits. Cancer Care also paid for my mom’s lymphedema sleeve after the insurance company called this a cosmetic sleeve and refused to cover the cost. Cancer care helped cover our medical needs and even helped my mom get a wig at a Look Good, Feel Good events that helped her esteem and confidence while going through cancer. Cancer Care was there to provide emotional support, financial support and overall well-being of our family. Cancer Care Services cared for our family during the most difficult times which is why I love being able to give back in every way that I can.

2019 – FEBRUARY:
From the Desk of…
Makeup & Memories, Chroma Services
www.ChromaServicesTexas.com

Being in the salon business allows us to talk with and get to know so many great people. Each person has a different story, different successes and different challenges. Over time, many clients come to feel like old friends, people we’ve known as the weather life’s ups and downs. Oftentimes, we get the privilege of helping them look their best as they celebrate milestones, like holidays, graduations, or marriages, for instance. But sometimes, it’s the greater gift that we get to help them when they’re feeling down, as they come to the salon not always feeling like their best. So great is it that something as simple as a haircut or new makeup can make someone feel so special on the inside as well as the outside. 

But you know it and we know it: fighting cancer can lead to days when you feel more than just down.

We don’t claim to be able to make everything better, but our amazing team of Hair Stylists and Makeup Artists do what we can to transform feelings of depression, lethargy, anxiety, and self-doubt into moments of beauty, confidence, and encouragement.

How do we do this? When a client walks through our doors, we see the person, not the patient, and we proceed to pamper them through a beautiful makeover inside our one-of-a kind Mobile Salon. With love in our hearts, our service to each client is totally personalized and nothing is left out! We call this the “Chroma Experience”!

Every three months, we have the opportunity to provide MAKEUP & MEMORIES for Cancer Care Services’ clients. Just recently, as part of their very special Valentine’s Dinner (2/09/19). It was the fourth time we’ve come out to a CCS event and each time we are touched by and grateful for the opportunity to interact with each person there. We leave always wanting to come back and do more – and we plan to. We are 100% committed to our partnership with Cancer Care Services and we certainly share the mission of the agency, doing as much as we can to reduce the impact of cancer in our community, by coming together and changing lives, one moment at a time.

Our motivation to do this began almost a decade ago. It is the story of a particular client that our co-owner, Meredith Villachica-Hood, has serviced for many years, during which time, Meredith had witnessed her difficult battle with cancer. Although her strength and beauty continued to be remarkable, year after year, she continued to grow back and then lose her all over again, during multiple years of chemotherapy. This inspired Meredith – and in turn, all of us at Chroma Services – to do whatever we could to turn the unfortunate circumstance of losing hair, due to cancer, into an agenda that any person battling or overcoming cancer may come through our doors and walk out with their head held high…we want to make sure each person sees themselves to be just as beautiful as we see them! We work with hospitals, nurses, doctors, and caregivers. Our shared goal is to make the traumatic experience of hair loss due to cancer and treatment not one of despair but something liberating – so that each courageous soul can walk down the street with their head held high!

A percentage of every service is donated quarterly to a Cancer Charity or Non-Profit Organization. Together, we will eliminate Cancer!

2019 – JANUARY:
From the Desk of…
Jane Oderberg, retired social worker and
new member of the CCS Board

As a long-time professional geriatric social worker in 2005, I was attending a women’s networking meeting. While catching up with a friend, she shared the fact that an employee at CCS was going to be out on medical leave and she needed to hire a part-time social worker for the interim. I told her that I would be interested in applying, so long as I could do the work and still care for my granddaughters. Well…as they say (whoever “they” are!) the rest is history!!

I started as a 20-hour/week home visit social worker, which I enjoyed very much. I maintained a presence in the healthcare field and continued to attend many networking meetings. I was repeatedly surprised, when asked what I was doing currently and I answered “working part-time at Cancer Care”, how few people knew what Cancer Care Services was or that it even existed! I must admit that until I started working there, I didn’t know Cancer Care did either! But once I knew, boy, was I proud to spread the word.

When the social worker who was out on medical leave returned, we job-shared for several months. Then the CEO came to me and asked that I come to his office; my co-workers teased that I was being called to the “principal’s office” for some behavior issue (like speaking my mind!). Instead, he informed me that the program director had resigned and asked if I was interested in taking on the position – full-time, with responsibility for all client programming, supervising the social work staff and interns, supporting the Board of Directors, and “other duties as assigned”!

It didn’t take long, really just a year, for my relationship with one of the finest and oldest non-profits in Fort Worth to take root and begin to grow. I loved my job helping clients and families navigate the maze that is cancer and all the ramifications that go along with it. I could leave work knowing I made a difference in people’s lives on a daily basis.

The staff was wonderful… more like family, really. We supported each other in good times as well as bad. It was a pleasure going to work every day. I also learned from our clients how cancer impacted their lives and how much they appreciated all that CCS did for them. I have never felt as fulfilled by my work as I did while at CCS.

Then and ever since, I have made it my mission to educate as many people as possible about the work CCS does, making sure people know how to refer clients to the programs. 

In July, 2016, I retired from my position – after more than eleven years. Who would have believed that my part-time gig would last so long? But my connection with CCS wasn’t over; it simply changed. I became a speaker’s bureau volunteer and I pledged financial support through the Legacy of Hope Giving Society. From these new vantage points, I have enjoyed watching the growth of the organization as it works to meet the needs of more and more people in our community. It felt good to be contributing still to something so positive. Then I looked at it from another angle.

A few months ago I was asked if I would consider serving as a member of the CCS Board of Directors. Thinking it would be interesting to now see the agency’s operations from the perspective of governance and strategy – informed by a deep understanding of our clients’ perspective, I said yes. So in a few weeks’ time, I’ll begin my term of service, continuing to support my favorite organization as a volunteer… an advocate… a donor… and once upon a time a good while ago, as a part-time employee.

Each experience has shown me in different ways the same thing: the quality of care and commitment to service offered daily by this organization to its clients. I hope to continue to contribute to its impact for many more years to come.