Speak Life

Our friends at Highlands Oncology Group recently made a video encompassing the value of words of encouragement and hope for cancer patients and their families. We hope you will take time to watch and please share with your friends.

 Speak Life--Highlands Oncology Group

Support for the Journey...

THE MATTER 

OF A GAS CARD

Lisa Manzini-Pace, LCSW

   Hope Cancer Resources    

The patient was tall and solid with a weathered and wise face.  He asked for the Social Worker after finishing his chemo treatment at the oncology clinic.  He drove to his daily treatments  from somewhere well into Oklahoma.  The previous week he had called in advance and a gas card had been left at the reception desk.  This no nonsense man had anticipated the same thing this week.

The social worker invited him to her small office in the clinic and explained that a gas card could be given to him in person as well.  The patient indicated that time was an important factor and asked again about how to arrange for it in advance.   He sat for a while after having been issued the gas card.  The social worker asked him a little about himself.  He wasn’t a big talker but indicated that his wife had severe medical issues and would soon require surgery in Fayetteville.  They commiserated on the complexities of health and medical care.  The man had a pleasant sense of humor and they laughed a little.

Each week on the same day he would ask to see the social worker for his gas card.  She learned where he was from originally, the work he had done, about his family and more.  He was not a natural talker but seemed to enjoy the little chats.  The social worker found them pleasant as well.  He liked to laugh despite the hardships of his situation.

In later visits the patient confided that his wife wasn’t doing well.  He, however, appeared to bear up quite well despite his treatments.  They talked about the news.  It had been a turbulent couple of weeks in the nation and the world.

                

Last week the patient asked the social worker if something was wrong.  This surprised her because there had been a serious occurrence but she felt she had concealed her sadness.  She explained about the death of a young man, a senseless and tragic event.  The patient nodded with understanding.   He knew about loss.  He had been in Vietnam.  His kindness was apparent.  He later confided that his wife’s situation was even more complicated.  The social worker offered reassurance and walked him out.  As he was leaving, the man turned back with a sad smile and said, “See you next week.”

Survivorship

 

Survivorship has become a hot topic in the cancer world.  So what exactly is it all about?  Survivorship is different for each individual cancer survivor.  For some, it is adjusting to the “new normal” once treatments are completed.  For others, it can mean getting back to life as it was before cancer. One important part of survivorship is coping with the diagnosis of cancer and all the changes that have occurred physically, emotionally, and/or spiritually.

I had a wonderful support system during my cancer journey.  There was always someone there with me.  I never had to face any of it alone.  My mother was my biggest support.  I know that I was fortunate and not everyone has this kind of support.  However, even though I had such great support, I still found difficulties in my transition from cancer patient to cancer survivor.  My journey changed my life completely. It affected every aspect of my life.  I was different physically, emotionally, and spiritually.  I had to find my “new normal”.  Since then, I have found journaling to be helpful.  I wish I had written down my thoughts and feelings and things that happened when they actually happened.  I recently attended a workshop at The Writer’s Colony at Dairy Hollow in Eureka Springs, AR.  The workshop was titled “Survivors Getting Stronger”.  I had the privilege of spending the day with other survivors and sharing our stories with each other.  We laughed, we cried, and we wrote.  Below is a piece of what I wrote that day…

Bad Hair Day

I got up out of bed and headed for the shower. I had another full day of treatments. I was in the shower washing my hair, when I realized that my hair was starting to come out in my hands.  My heart sank and I felt the tears begin to stream down my cheeks.  There was so much hair falling out.  I couldn't stop myself from running my hands through my hair over and over again. I thought to myself, I'm going to be bald if I don't stop.  I knew this day was coming, so I was surprised at my emotional reaction.  To my surprise, when I got out of the shower and looked in the mirror, I wasn't bald. I couldn't even tell that my hair was coming out by looking, but I could sure feel it. My scalp hurt.  It felt like I had my hair up in a super tight ponytail all day and had just let it down, only a hundred times worse. I finished up in the bathroom and headed to the bedroom to get dressed. I was sitting on the bed trying to muster up the energy to get my clothes on, taking a shower had sucked up what little energy I had started the day with.  My mom got there to pick me up. She came in to my bedroom and began helping me dress. I reached up and touch my hair.  As I pulled my hand away from my head, the hair came with it.  My mom just looked at me and assured me that it would be ok.  She was so positive and encouraging. A few days later, we were once again heading to treatment.  I had a radiation treatment at 9 in the morning. It was late summer, so the mornings were humid but mild. We had the windows rolled down enjoying the morning breeze.  I caught a glimpse of something from the corner of my eye in the window.  I turned to see what it was.  I started yelling for my mom to stop the car as I frantically tried to get the window rolled up.  The car came to a stop and my mom was repeating “What's wrong? Are you ok?”  I calmed myself long enough to say, “My hair is blowing out the window!”  We just looked at each other for a moment and then we started to laugh.  We laughed and laughed until we were crying.  

Christy Scarrow, LSW

 

National Cancer Survivors Day® is coming up on June 2nd.  Christy Scarrow is a Licensed Social Worker and the Manager of Patient Services at Hope Cancer Resources and is a Cancer Survivor.

The "New Normal"

This week we're sharing a piece originally posted last year by one of Hope Cancer Resources' Oncology Social Workers, Lisa Manzini-Pace, LCSW.

The term "New Normal" has a special connotation for people undergoing treatment and/or survivors of cancer.  Without their consent, they have been inducted into an intense and often baffling treatment regimen, one that changes their daily routines, expectations, interactions with others and ability to predict how they will fare during and after prescribed treatments.  This is a daunting trajectory and one best faced in small doses.

As human beings we seek to predict, quantify and control.  These instincts, while often previously successful, can be impediments to smoothly navigating the cancer treatment labyrinth.  Oncologists, who the patient seeks to trust implicitly, are often the first to admit that treatment involves commonalities but that each individual tends to respond in a somewhat unique manner.  The truth is that none of us working with cancer treatment have a crystal ball.  That said, here are a few observations noted by this writer courtesy of cancer patient wisdom and research.

Undergoing chemotherapy and/or radiation will test one’s metal.  Chemo induces various side effects but the overwhelming one mentioned is fatigue.  And a close second is chemo brain.  The former is a bone weary fatigue and the latter is a passing state of impaired memory and clarity.  It is essential that one lower his/her triathlon or quiz show expectations during these phases.  There will be good days and not-so-good days.  Learning to be gentle with oneself is as crucial as any pill one may swallow.  It is an art to be cultivated along with a stalwart sense of humor. 

One’s entire arsenal of healthy coping is there to be used.  This may include but is not limited to eating well, exercise (physical, mental and spiritual), common sense, resourcefulness, courage, compassion (self first!), joyfulness, intelligence, mirth, humility, faith, hope and love.  These are the aspects of you—unlike cells—that cancer cannot touch.  Use them in large doses.

Priorities will change.  Things that once seemed important are relegated to the back seat of the caboose.  To quote Arthur Golden in Memoirs of a Geisha, “Adversity is a strong wind. It tears away from us all but the things that cannot be torn, so that we see ourselves as we really are.”  Most  patients say that such experiences were the awakening of new strength and understanding.

Avoid the naysayers.  Cancer, rather like pregnancy, invites unsolicited confidences from others.  Some will be little gems to be treasured while other “stories” will be about fear, pain and darkness.  You get to choose who you will listen to and who you will wish well and send on their merry way.

Simply, remember that your "new normal" may vary greatly from that of another person who has dealt with a cancer diagnosis. Find your comfort zone and surround yourself with people who are going to help you stay there. 

The Wheels on the Van

It's easy to think that the most difficult part of a battle with cancer is the physical condition that some of the treatments can leave you in. And, for many people, that is certainly the case. Chemotherapy can make you sick, radiation can leave you with uncomfortable rashes that make even the most comfortable clothing in your closet painful to wear. Both forms of treatment cause fatigue that there is simply no cure for except the end of treatment.

But for many people in Northwest Arkansas the first hurdle to be cleared when discussing a treatment plan with their oncologist is figuring out how they will even get to their appointments in order to begin the fight. Some patients may not be able to drive as a result of their disease, others because of treatment side-effects. Friends and family may only be able to help for a short time or on a limited basis. With chemotherapy appointments scheduled every few weeks and radiation plans typically requiring a patient to visit the clinic five days a week for 5-7 weeks, transportation becomes one of the primary obstacles for patients as they go through treatment. Patients can not fight their cancer if they are unable to get to the clinic.

At Hope Cancer Resources we have three vehicles in our transportation program. Our drivers drive hundreds of miles every weekday to provide the support necessary to make sure that treatment plans are carried out as prescribed.

In the first four months of 2012, our drivers put over 54,000 miles on our vehicles and made 927 trips. That's 10,000 miles more than this time two years ago. Sometimes a trip is only a few miles. Other times a driver could be gone all day picking up and taking home to towns in Oklahoma or Carroll county. In 2011, the total miles logged by our vehicles came in at just over 129,000. That's a lot of time behind a wheel, and a lot of doctor's visits that weren't missed. That's a lot of hope given.

If you or someone you know would benefit from transportation assistance, or if you'd like to make a donation to support the program, please contact us.

From the Trenches

It's all well and good for us to provide you with advice about things like cancer prevention, stress management, and caring for a loved one who's been diagnosed with cancer. Based on our experience with patients in the clinic and the information we gather from other sources, we feel comfortable acting as a kind of authority on these subjects. But sometimes the best advice comes from the people who have actually been through this fight - survivors.

CureToday.com recently asked this question on Facebook...

"If you could go back and give yourself one piece of advice on the day you were diagnosed with cancer, what would it be?"

Some of the responses were very poignant and moving, others more practical. Some, like the ones that encourage lots of research vs. the ones that discourage looking at statistics, are even contradictory. We've chosen some to share and would love to know...what would your advice be?

"research, research, research"

"Try to remain as positive as possible."

"Don't make any decisions in haste. Take the time to process the choices and the outcomes."

"let people help"

"Costume wigs are cheaper and more fun."

"Take better notes. Never go to an appointment alone... Let people help you."

"Get the prescriptions for anti-nausea meds and take them before you need them."

"Remember to breathe."

"Tell people your situation."

"Take a family member/friend with you so you don't have to hear the news alone."

"Believe that God will get me through this ... Always get a second treatment opinion... Don't read statistics!"

"Stay calm, it's NOT a death sentence! :)"

"To remember that, in some ways, the diagnosis is a gift, even if it doesn't feel like one: I know how precious life is."

"Keep a journal. Jot down all subsequent doctor's visits, tests, etc."

"Educate yourself, ask questions, have your voice heard."

"Be comfortable with your choice of oncologist. If the doctor doesn't feel like a fit for you, find someone else BEFORE you start any chemotherapy and/or radiation."

"Don't let panic set in."

"Don't worry about things you cannot change. Be happy for each day no matter how mundane it may be."

"My husband would give himself the same piece of advice he has lived with since being diagnosed with brain cancer five years ago. Never let it win!!"

"Don't believe anyone who says a needle biopsy of any kind is just 'a little prick.'"

"Become selfish! No second chance." 

Been There, Done That...

Imagine that you have recently been diagnosed with cancer and you have noticed that your usually close friends are starting to become infrequent acquaintances.  What if your friends and family seem to expect you to remain upbeat and optimistic, but you are not feeling that way?  Or what if you feel like you've leaned on them so much already... you just can't burden them anymore with your sometimes obsessive need to talk about your diagnosis.

For a cancer patient just starting down the road through treatments to recovery, it's helpful to talk to a compassionate and professional social worker who has the ability to calm your fears and explain what's to come.  Our social workers and patient assistance programs are an important part of what we do at Hope Cancer Resources and, for many patients, they are enough.  But sometimes a patient benefits even more from sharing their experience with someone who has already been through it themselves.  That's when our "Been There" volunteer program can become an additional resource.

"Been There" is a local network of cancer survivors who volunteer to offer their time and an understanding ear for newly diagnosed cancer patients.  Because each volunteer is a survivor, they probably experienced similar feelings and had some of the same questions and concerns during their own cancer journey.  The program provides an outlet for the patient to express all of their emotions - even negative ones -  without fear of upsetting loved-ones and caregivers.  The volunteers are available to help with non-medical questions using layman's terms, and conversations are kept strictly confidential.

The program is managed by one of our licensed social workers, Christy Scarrow, who manages our volunteer programs.  Christy matches patients who request the service with a volunteer who has a close match to their diagnosis or personal situation (single parent, elderly, etc...).  

If you know someone who might benefit from this service, or are interested in becoming a volunteer, contact Christy at 479-361-5847 for more information.