Oncology Optimist

“I am an optimist. It does not seem too much use being anything else. “

I came across this quote recently and it stopped me dead in my tracks. So few words that say so much. Certainly there are many positive quotes around that inspire. What was it about this one that grabbed at me, deep inside? And I realized I was reading my own worldview put into two sentences.

I don’t think I could work in oncology unless I saw the world in an optimistic way.  I believe in hope and good outcomes. I have seen hope’s work in action.  I have seen survivors survive longer than anyone thought possible. I have seen resiliency at its finest in those who climb Mount Cancer and come up and over their own cancer mountain. They come over on the other side and are forever changed – and they create change in their worlds.

Folks like Melanie Goldish, the founder of SuperSibs.  SuperSibs supports and honors siblings who are impacted by oncology – not just cancer but any oncology related illness.  And, as I understand it, SuperSibs came from Melanie’s experiences with her two young sons.  While one son was in treatment, Melanie noted all the support available to her son the patient – but not so much support was available to her son the sibling.  Once her son the patient was home after his bone marrow transplant, Melanie was on her way to creating life changing support for siblings.

Or Jonny Imerman, who was diagnosed with cancer at the age of 26 and believes no one should have to fight cancer alone.  While he had great support from friends and family, he had very few cancer peers – those his own age who had been there and done that.  In 2003 he founded Imermans Angels – a cancer support organization that matches cancer patients and survivors with each other for the one on one support that he craved during his treatment.

Then there’s Dr. Ken McClain, whose tireless work for the Histiocytosis community knows no bounds.  Dr. McClain works at Texas Children’s Cancer Center where he treats children with Histiocytosis.  Not only does he treat patients with Histiocytois, but he is in the lab researching a cure for this blood disease, too.  But here is the thing – Dr. McClain’s power and impact come from his heart.  He makes himself available to families facing this disease.  He answers questions, and sees patients.  Families come from all over the world to work with Dr. McClain.  And he often consults and works remotely with oncology teams to determine the most effective treatment for patients diagnosed with this often unheard of oncology disease. He even road a fixed gear bike across the United States one summer to help create awareness and fundraise for a cure.

Allison Clarke knows about hope. Allison and her husband Kip founded Flashes of Hope during their son’s cancer treatment. Their mission was to change the way children with cancer saw themselves through the gift of photography. By photographing these children and their family members, they hoped to change their view of the cancer experience and raise money to fund pediatric cancer research.  The photographers who take these powerful photos are high level professional photographers who donate their time and talent to change the face of cancer in the eyes of a child.

I do have hope that there will be cures and that all the fundraising done in our oncology world will make a difference. I have hope that resiliency will win over resistance.  As you can see, however, I have much more than hope.

I have evidence. Evidence  that supports my choice to be an optimist.  Just ask Melanie, Ken, Jonny and Allison.

I am an optimist. It does not seem too much use being anything else.

http://www.supersibs.org

http://www.imermanangels.org

http://www.txccc.org/histiolab/

http://www.flashesofhope.org Continue reading

Advertisements

Not Just A Paper Pusher

Doctor.

Please talk to me.

Please tell me what you would do.   Not as a doctor, but as a parent.

Please don’t tell me too much information after the most important thing you said – that my child has relapsed and we are now moving into another treatment protocol.  I’m likely not to hear you as fear will overtake my ability to think clearly.  And I need to think clearly.  I need to  hear what you are saying so that together we can save my child.

But it is foggy in my mind and the office we are sitting in seems to be moving, or spinning, or something.  I keep looking at you and trying to hear what you are saying; your mouth is moving and I do not hear the words.  It seems I’ve entered a  Charlie Brown special and you are the teacher going “Wah wah woh wah wah”.

We have been down this path with our child before and now I know, I really know, I know that it is much more difficult to watch someone else go through treatment than go through treatment yourself.

Do I have any questions?

Yes – can you tell me how to go about switching places with my child?  Any chance that I can have a turn as the “Roid Ranger” and not them?

Can you share what lane I get in to order the cure for my child?  Or save their siblings from the agony a relapse will bring to them as they thought they had returned to their normal?

Why do you keep talking when I cannot listen?

Did the door just open?

A young woman is nodding and putting her arm around my shoulders.  I notice that she wipes tears off of her face.  She offers me a tissue. She tells me, “You are not alone.  We will all get through this together”.

And I believe her.   Why?  Because she was there with us before, when our child was first diagnosed.

She is our social worker.

She was not just a paper pusher or resource gatherer.  She was a listener, a supporter, a cheerleader, a caregiver, a hand holder, and a professional.

She connected us with support we needed when she herself could not provide it.

She wrestled the red tape monster when the insurance company would only cover 14 days of anti nausea medication a month after they told me that the treatment my child was on was not that difficult to manage.

She took a call from me on a Friday night when she was supposed to leave hours ago – so we could talk about how to set potty training expectations for a child who was going through chemotherapy.

She is our social worker and I can’t imagine going through this without her.


Friends

Lean on me, when you’re not strong
And I’ll be your friend
I’ll help you carry on
For it won’t be long
‘Til I’m gonna need
Somebody to lean on

~Bill Withers

Now that you are living with cancer, I am going to fill you in on secret about cancer that is not often talked about. Your going to need some new friends.

I am not saying that every friend you have won’t be there for you, or that they will run to the hills in fear that they can catch your or your family member’s cancer. Not true. Some friends will stay with you and continue to be the awesome friends they have always been.  Your cancer may bring you closer and your relationship with these “keeper friends” will deepen.

You will, however, gather a collection of “background friends”.  These friends, or family members for that matter, are people that have been in your life a long time. You  believed would be there for you and your family should anything happen.  You were confident those friends would help you and yours no matter what. You could count on them.

Now that cancer has come a callin’, you wonder where these friends are. Initially, they called and emailed to see how you are doing.  They were distressed by the news of your diagnosis and asked what they can do to help. Your head was spinning and you said you’d let them know.  Into treatment, you find that you hear from these friends less and less.  They seem to have just moved on while you, or your loved one, are fighting for your life.  You feel separated from the people that you were closest to.

You were not prepared for cancer, and its diagnosis made your head swim and your stomach sink. When your medical team encouraged you to rally your support system, you were sure you had one.  Losing friends never crossed your mind.  You were sure you had all the support you needed.

This is a big secret in the cancer experience. I often see cancer survivors or their family members in my office at this point, wondering what is wrong with them, how they could have misjudged their support system so. They are grieving the loss of their previous life, and a big part of the grief stems from the loss of relationships, of friendships, that they viewed as important and sacred.

We talk together about their grief. I often have to assure them that it is not their fault, that they have done nothing wrong. A serious medical condition tests a support network. “You have entered a world that is unknown to many of your friends, ” I say, “and it scares them.  If it can happen to you, it can happen to them, right? For some of your friends, you are living their worst fear. And they can’t deal with that. “

We often discuss what can be done to gather the support that they need.  They share that the feel so alone. Maybe this is a good time to think about joining a support group?  “Bah!” they might say, “Nothing is wrong with me. I don’t need a pyschobabble group!” But, they do need friends.

When did you last make new friends?  Maybe when you started that new job? Or joined a running group?  Don’t you remember making new friends when you started college or had your first child? This, too, is another milestone in life.  Your cancer is a new phase in your life and you need some peers.

Support groups offer this.  They provide you with a place to connect with others who share the same or similar experiences related to cancer.  You share your achievements, and your fears. Your pain and your joys. They are not therapy groups, nor are they their to tell you something is wrong with you.  They are there to help you know that you are not alone.

Some stumble onto support via the Internet.  They are researching their type of cancer and find an on line support community . Others locate support groups through the hospital where they or their family member is receiving treatment. Other times, you may need to find a local cancer center that provides support groups along with education about cancer. Some use all three types of support groups to help them build a new part of their support network.

Wherever you find it, know that you can count on a support group to help you meet others impacted by cancer and discover a place where you can go to find positive reinforcement, emotional support and hopefulness.

Meeting others, just like you, can lead you to friendships that last beyond cancer.

Choose Hope

Today our first guest blogger joins us, sharing his views on choosing hope.

Hope. A small word that carries so much meaning and power, especially for those patients and families dealing with cancer and other life-threatening diseases.

How do we keep hope when faced with a diagnosis, an unsuccessful treatment, a relapse or worse yet … the death of a loved one?  I have faced and tried to answer these questions on many occasions both for myself and others over the past nearly ten years since my daughter was diagnosed with and died from a rare form of histiocytosis.

Hope is difficult to sustain when confronted with a disease that does not have a cure, requires treatments that can cause additional pain and illness, and involves a risk of death as one of the potential complications.

Hope can be fleeting when the news of progress is only temporary or a relapse occurs after remission has finally been achieved.

Hope can be hard to find when you see a disease that causes so much pain and suffering for both the patient, as well and their family, friends and loved ones.

That is exactly why you have to choose hope, make a commitment to sustain hope and not lose hope for yourself and others.  I am not saying that this choice is easy and I myself have struggled with remaining hopeful.  When dealing with those struggles, I have relied on a quote from Lance Armstrong and a brief encounter with a pediatric cancer patient who embodied that quote.

Lance Armstrong wrote the following:

“If children have the ability to ignore all odds and percentages, then maybe we can all learn from them.
When you think about it, what other choice is there but to hope?
We have two options, medically and emotionally: give up, or fight like hell.”

Part of the diagnostic process for my daughter involved her undergoing a bone marrow aspiration to determine if the disease had invaded her bone marrow.  She was not even a month old and was not able to receive any anesthetic during this procedure.  After the procedure, I was carrying her around the inpatient cancer floor trying to get her to calm down.  We walked into the play room where a 3 year old boy was sitting with his mother.  The little boy was bald from having received chemo and was attached to a IV pole.  He took one look at my daughter and asked if “she was sick too.”  When I told him that we did not know, he immediately and without any hesitation said, “That’s OK, I’m sick too, but we will both get better.”

Neither my daughter nor that little boy “got better.”  But I still to choose to hope for myself, for their memories, and for everyone else fighting against these terrible diseases.  It is one the best choices that I have made or will ever make.

I hope that you can find a way to make that same choice.

Michael Golding lives with his wife Leslie in Houston, Texas, where he is a Senior Attorney with Thompson,Coe, Cousins and Irons, LLP. In 2001, his infant daughter, Sydney, died  from a rare form of histiocytosis.  Since that time, Michael has worked to promote disease awareness, education, fundraising and parent support for the histiocytosis community.  He is one of the founding members and sits on the parent advisory board for the Histio Heroes Reseach Fund (HHRF) which supports the ground-breaking histiocytosis research being done through the Texas Children’s Cancer Center’s Histiocytosis Research Program.

World Cancer Day: How has Cancer Touched You?

Today is “WORLD CANCER DAY”. Doesn’t that sound larger than life?   Not simply an awareness day for one community, but the world.

The World Health Organization has one goal – making sure we know that cancer is the leading cause of death around the world. Not HIV/AIDS, or cardiac disease but cancer.  They estimate that 84 million people will die of cancer between 2005 and 2015 without intervention. Their focus: Prevention.

Today, 40% of cancers can be prevented through healthy behaviors including:

  • Providing children with a smoke free enviornment.
  • Being physically active, eating a healthy diet, and maintaining a healthy weight
  • Awareness of virus related cancers including liver and cervical cancers
  • Avoiding over exposure to the sun

1 in 2 men and 1 in 3 women will get cancer in their lifetime.  Childhood cancer is the #1 killer of children. 1 out of every 4 elementary schools has a child attending their school who is battling cancer. These statistics show us just how large of an impact cancer has in our world.  None of us go untouched when a cancer diagnosis is made.

What are you going to do about it?

Today we challenge you to publicly commit yourself to changing the world of cancer.  We know you are thinking to yourself, “Now, that sounds big! No way can I do that! I am just …well, me!”  Guess what? You can do it!  It is easier than you think!

Today, on World Cancer Day, tell us how cancer has touched you and what you are doing about it. Maybe your mom had breast cancer and you are faithful about mammograms.  Maybe you work in oncology and only practice a healthy lifestyle.

Share your story.  Just a post.  Tell us how you have been touched by cancer.  Then share what you are doing about it.  Let’s get the prevention train going.  We can do it.

Where do you get your strength?

I’ve learned that people will forget what you said,
People will forget what you did,
But people will never forget how you made them feel.  “

~ Author Unknown

Where do you get your strength?

When you work in oncology, what keeps you going?  When you or your loved one is fighting through the side effects of chemotherapy, what inspires you and moves you forward?  If you are researching a cure, what keeps you going? Where does your strength come from? Come on, we know you have it because we see it!

Here at the OncWorker, we are on a mission.  We want to know – for those of you who have been touched by oncology  – how do you get your strength? And once you found your strength, what did you do with it?

These are some of the questions that this blog will address in the next few months. We have invited several people who have been impacted by the world of oncology to join us as guest bloggers.  They have graciously agreed to share their experiences with us. What a gift!   We can learn so much from those whose lives have been impacted by working or living with cancer.

Who has inspired you? Who has helped you feel strong?  Please let us know!  We’d love to share your stories with those who read us in the blog-o-sphere too!

 

 

New Years Resolutions: Weight Issues and Cancer

WHAT’S HAPPENING, WHAT YOU CAN DO ABOUT IT

It’s January.  The celebrations of the holiday season are behind us. When attending those New Year’s celebrations, or while on the phone with a good friend, you heard all about those resolutions your friends and loved ones have to make better versions of themselves in the new year.  Some have joined the gym, others have started to diet, some have quit smoking and some have undertaken it all.

You look in the mirror and notice how much weight you have gained since your cancer treatment started months ago, and find yourself envying those who can make weight loss resolutions. Or, maybe your weight issues are caused by the inability to keep weight on during treatment. Either way, you’d like to find a way to have better control of your weight.  Here is the big question: Can you make the resolution to make a better version of yourself safely while going through treatment for cancer?

Yes, you can.

First let’s make one strong point before going forward:

Do not make changes to your diet or exercise routine without first discussing them in detail with your doctor.

This is not the time to count calories or to take on the fad diets others around you may be working with.  The food you eat and the activity you undertake can make a difference in the effectiveness of your cancer treatment.  You medical team can help you understand what choices are safe for you at this time.  Discuss any changes you are considering with them.  They can help you take care of yourself and any treatment related weight issues you may be facing.

If you decide you are going to make changes in the foods you eat or the activity level you undertake, keep in mind that your goal is to make some lifestyle changes that will be with you after treatment is behind you.

Here are some common weight issues that cancer survivors face and some suggestions for coping with them:

WEIGHT LOSS

This is the most expected side effect of treatment

Traditionally, people associate chemotherapy with nausea and vomiting, which lead to weight loss. Side effects from chemotherapy and radiation treatment can cause nausea, fatigue and vomiting, and changes in the way foods taste.

  • Medication management of side effects

Because weight loss is often expected during treatment, cancer survivors do not discuss this topic with their medical team.  They decide to “accept their fate” and “be strong”.  This is not necessary. There are many interventions your medical team can offer you to manage treatment side effects that impact your ability to keep weight on.  Do not hesitate to discuss them with your team.

Sometimes cancer survivors are not utilizing medications that can help with nausea and vomiting effectively.  Follow the instructions you are given by the treatment team and make sure they are aware if you are not getting relief.  Often there are other options available to help you.  If the cost of medication is an issue for you, assistance is available.

  • Emotions impact appetite during treatment

Emotions impact appetite.  Many of my clients have told me that coping with the emotional impact of their cancer diagnosis has been much more challenging than the physical side effects of treatment. Loss of appetite can come from the emotional impact of cancer. Again there are a number of treatment options available to address this issue. Working with a counselor who has specific training in oncology can help you process these emotions and find your equilibrium again.

  • What you can do

First, discuss your weight loss issues with your medical team.  It is important for them to hear and understand your concerns. They are part of your support team while you are undergoing treatment.

In addition, you may want to consider:

  • Eating when it is time to eat, not based on when you feel hungry
  • 5 to 6 smaller meals instead of your typical 3 meals a day
  • Adding foods high in protein such as peanut butter home made protein shakes
  • Consider adding nutritional supplement shakes such as Ensure and Boost
  • Meeting with a registered dietician who is trained to work with eating issues faced by cancer survivors

WEIGHT GAIN

This is often a surprising side effect of treatment

The causes of weight gain during treatment stem from a variety of factors. These include medication side effects such as fluid retention and increased appetite, along with low energy, which leads to lower activity levels.

  • Emotional eating

As stated earlier, emotions impact appetite.  Feeling out of control, ill from the side effects of treatment, and anxious or depressed can cause one to eat for comfort. Finding effective support for these issues is important to your long-term health strategy.

  • What you can do

First, discuss your weight gain issues with your medical team.  It is important for them to hear and understand your concerns. They are part of your support team while you are undergoing treatment.

In addition, you may want to consider:

  • Eating 5 portions of fruits and vegetables a day
  • Focus on eating high fiber foods
  • Use caution when eating foods high in fat or high in salt
  • Find some social support – find someone to be active with
  • Meeting with a registered dietician who is trained to work with eating issues faced by cancer survivors. They can help you plan healthy meals that meet your needs and your taste preferences.

SUPPORT

Whether you are concerned about weight loss or gain during your treatment, support is available.  Support groups for survivors, meeting with a registered dietician who can help you plan healthy meals that meet your need and taste preferences, and working with a counselor trained in oncology can help you work through cancer related weight issues.