Tag Archives: cancer patients

Roberta picture

Healing Spaces

This week’s guest blogger is Roberta Aberle, a MyLifeLine.org member. Born in Rapid City, South Dakota, but raised in Fort Collins, Colorado, Roberta Aberle has been surrounded by cancer her entire life. Diagnosed with the rare cancer, Primary Peritoneal Carcinoma Stage IIIC, on Leap Day, 2012; after a total hysterectomy in 2009 was performed to reduce her risk for developing cancer, Roberta has been both a fighter and advocate for rare, sub-types of cancer. “I’d love to see other cancers reach the level of awareness and fundraising that breast cancer has with the Susan G. Komen Foundation,” she says. Roberta has been on multiple treatment regimens since her diagnosis in 2012, with the goal remaining to see some phase of remission. Her treatment has included clinical studies, surgery, intraperitoneal/hyperthermic chemotherapy, but has also incorporated many holistic approaches such as journaling, meditation, aquatics and nutritional strategies. Her primary goal is to not only reach remission but to use her experience to help demystify the cloak around cancer for caregivers by speaking honestly and authentically about the insights gained living the role of a cancer patient.

In my travels this week, it was a huge reminder of how radical the pace of life truly is. Especially in places of mass transit, like an airport, the flurry of people racing one from place to another is astounding.  I used to be one of those people.  My life revolved around the next trip, the next big project, the next deadline, the next …. whatever.  I didn’t sleep enough hours a night, I worked too many long days, in fact, at this time of day on Friday, you’d sometimes still find me chained to my desk.

My weekends were ruled by all the errands and “need to do’s”, I would often say it was as if my weekends just ‘evaporated’ before I found myself back at work on a Monday morning far too fast.

It’s exhausting to even write about.

Then I got my diagnosis and so much of that life came to a screeching halt.  Of course, it picked up pace with other types of activities; tests, scans, labs, treatments, etc. And before I knew it I was back living a frenetic pace.  I even worked some days before my chemotherapy because I had a few hours beforehand.  That’s a little extreme even I can finally admit.

For some reason, this week I realized that I cannot possibly keep up with my old pace now.  I am too worn out from all of the tests, labs and appointments, too fatigued by the treatments, too weak from the assaults on my body.

But rather than feeling discouraged by these restrictions, I understand their purpose.

I need to heal.  I have taken in about as much chemotherapy as a person can and I kept right on functioning to a degree.  I have been out of weekly treatments for barely a month and yet I keep asking myself when I am going to feel stronger and more energetic.

Talk about expecting too much too soon.

This week I stumbled upon a variety of ways to help myself heal in the most unexpected ways.  Whether staring at a long stretch of road or even waiting out airport delays; there is the opportunity to focus on healing.  We have the power to create our own healing space in the midst of whatever surrounds us.  It doesn’t have to be a place, it doesn’t require tons of effort nor does it have to consume a great amount of time.

Instead of getting sucked into the stride of others, the nuisances of public places, the inevitable down time that comes with any commute, job or nearly any endeavor these days, I let my mind drift to a mantra or literally just focused on the purity of the moment to avoid the headache associated with racing around.  You don’t have to be able to go to a spa or sanctuary to escape the busyness of life. You can escape into your own healing space.

In flight, scrunched into a window seat, the flight oversold, overhead bins burgeoning and the requisite crying baby in the seat directly in front of me, I focused on the plumes of clouds that we climbed through, marveling at their majesty. The billows stretched as far as you could see, a virtual ocean of white, formations crafted from the swirling and fluid mist. It was like flying through a piece of art. The beauty of it brought tears to my eyes. Those big tears that literally cascade from your eyes and saturate your face.  I found a space to heal.

At nightfall with the satiny feel of cool linen against my skin, atop a cushiony bed with the comforting smell of the night air wafting in the window brought another brief moment to reflect on healing.  Breathing in the scent of fresh-brewed coffee before turning on any technological gadget, yet another space to think about healing.

Woven in throughout the day, in the simplest of acts, it is possible to escape the rat race.

It doesn’t feel like an effort, it doesn’t feel forced, it doesn’t even feel like another thing I should make myself do.  It feels natural and welcome.  By sheer observation and trying not to contrive something else to add to my routine as a goal or a task, it is possible to just use awareness of your surrounding as a means to heal.  The colors, the sights, the scents, the patterns, the vibrancy, the sounds, the tastes, are all facets to appreciate in any situation.

All it takes is the recognition to pause, to find what is unique in every moment that can contribute toward healing and remind myself, “I am healing.  I am healing.  I am healing.”healing spaces

One Day at a Time

Tricia, Post Author

When you are diagnosed with cancer, one of the first things you do is to try learn everything you possibly can about the heart-wrenching news you have received.  You have so many questions and you want the answers to all of those questions NOW.

What is a fine needle aspiration and core biopsy?  How much does it hurt (needle = pain!)?  How is a biopsy performed?  Will they use anesthesia?  What is pathology and what do all the results mean?  What does Stage 2B mean?  What is a lymph node?  How do cancer cells grow and more importantly, how do I stop them?  Did I cause the cancer?  What is a lumpectomy?  If I have surgery, will it get all of the cancer?  Will I need chemo?  If I do, will I be sick or lose my hair?  What is radiation?   What is a port?  Does it hurt when it is installed in your chest?  How is blood drawn from a port?  What??  There is a needle in your vein??

Then you start asking the even harder questions of yourself.  WHY ME? I have been kind, generous, loving and joyful.  I am a good wife, mom and friend. I have dreams to finish.   I want to see who my children will become.  I want to see them graduate, go to college, marry, raise a family, and experience the joy of grandchildren.  I want to retire with my husband, travel, spend time together after raising a family.  Will I die before my dreams come true?  Do I need to write down the “Bucket List” and start crossing things off TODAY?  Why did I wait to do the things that I always said I was going to do?

Cancer gives you more questions than answers.  My oncologist nurse, Tammy, gave me the best advice.  Tammy said to enjoy the things that I can, when I can and to take it ONE DAY AT A TIME.  She told me to not get ahead of myself or to insist that I know all of the answers immediately.   Pray, meditate, laugh, cry, research carefully, talk, love, hug, but most of all, one step, one day at a time.   Learning this helped me at doctor appointments, before and after surgeries, through chemo, radiation, reconstruction and even today, 4 years later as a “survivor”.  I always have the fear that my cancer will return but I don’t allow that fear to overwhelm me.  I accept that it will always be with me but I take it one day at a time, enjoying my life with my husband, my children as they grow, marry and bless us with grandchildren!

One day at a time.

 

Living Life to Its Maximum – My Son’s Cancer Story

Today we welcome guest blogger, Michele Mitchell, a MyLifeLine.org board member who shares the story of her young son’s brain cancer journey, including some of his own reflections on the experience.

Every Thankful Thursday is an opportunity to reflect on feelings of thankfulness and meaningfulness.  However, nine years ago the idea of even trying to pretend to be thankful would have been next to impossible.  Now, I know an even deeper meaning of being truly thankful as a result of many experiences my son and I shared as we adventured through the land of pediatric cancer.  Nine years ago, my only son was diagnosed with a highly malignant brain tumor two weeks before kindergarten.  As most families were preparing themselves for new adventures at school, we were preparing ourselves for the storm of a lifetime that consisted of brain surgery, radiation, chemotherapy, and countless doctor appointments.  However, it was amidst this very storm that we have learned to understand and feel the true meaning of being thankful.  There is no better way to capture this understanding than to share some insights from some of my son’s writings.

When Sean was in the 5th grade, he was asked to write about an event that changed is life.  His story was titled “Living Life to Its Maximum”.  He started his story by sharing his favorite quote by Babe Ruth: “Hero’s get remembered, but legends never die”.  Then, he proceeded by stating….”Shortly, after moving to Colorado a tornado came sweeping into my life: This tornado was called brain cancer.  The story does not end there.  Now, five and half years later, my life is full of memories and surprises.  I hope you enjoy this journey of memories and learn that all parts of life are never forgotten.  No one said life was ever easy, but hard times help us embrace and appreciate our friends and family around us.  Continue on, this story waits for no one.  In August of 2004, I was diagnosed with brain cancer.  I was very scared, confused, and felt tired a lot.  Both of my parents were with me during this time.  I don’t know how I could have got through without them.  They both still help me deal with the effects of the treatment and are very patient and understanding.  The storms of life can be very hard.  This storm changed everything.  For a few weeks I had been feeling very tired and dizzy.  My stomach hurt all the time and I could not think clearly.  After my brain surgery, I felt somewhat better at least for a while.  Then, radiation started and I felt horrible.  I went from 54 pounds to 39 pounds in one month.  Then, chemotherapy started: The only word to describe this is “horrible”.  I felt light headed, tired, nausea, and my body hurt all of the time. Through all of this, I learned to never give up when things seem impossible.  I learned that God has a plan for my life and he can turn even the most impossible situations around.  My life since then has been better.  My memories of childhood will also be good.  My trip to Disney World from the Make a Wish Foundation was great.  I will never forget the times my mom and I had there.  I will remember the time I have spent with my dad and how much time he spent with me and loved me.  I know how much my mom and dad love me, and how much God must love me too.  Those will be the things I think about most.

I have also learned that I never let a great thing pass.  I like to eat so much chocolate ice cream.  I will always remember my cats, they are so cute.  I will remember learning about owls; my dad says I look like one.  I will always have good memories of my parent’s houses.  I like to think about the first time I beat my dad at chess.  I like the peaceful quiet nights at my dad’s house playing video games.  I will remember how my mom was so caring for even the little things.  I will always remember my great room at my mom’s and all the good meals.  My friends at school will always be a special part of my heart.  I will never forget them.  Holidays are going to be great memories too.  Great food and family at Thanksgiving, and the great days we had at Christmas.  I will always remember how many people really cared for me and made me feel loved.

I look forward to living a life with a great family and a great passion just for living.  My early years have taught me to live every day, I mean really live.  I will work as hard as I must to achieve my goals.  Knowing that I have God on my side, I will never fear.  I know God has a purpose for me because he saved me from cancer.  As I get older, I know I will still feel young in my heart.  I want to continue to grow and learn.  I am excited to see the world and experience life in every way.  I will always be honest and treat people well.  I look forward to having my own family and being a great dad just like my dad.  I will have a good relationship with my children.  I will use my hard times to teach them great lessons.  I will teach them that God hears your prayers and it does change things.  I am so thankful for a chance at a great future.  I will make the most of this life and never waste it.  I will always be thankful for my friends, my family, and the lessons learned from this storm.”

Now at the age of 14 years old, my son is still teaching us about the true reasons to be thankful for every minute of every day.  Oh how I wish mylifeline.org had existed nine years ago; however, I am so thankful that today this organization can help so many families stay connected and feel the power of support as my son so beautifully articulated above: “I don’t know how I could have got through without them”.

Cancer (KICK BUTT) Attitude

My cancer attitude began when I was diagnosed with Stage 2B Lobular breast cancer on September 2, 2009.  What is cancer attitude?  Cancer attitude keeps you fighting when you feel like giving up.  It keeps you laughing when you feel like crying.  It keeps you going forward when all you want to do is stop, go back and have a do-over.

With cancer attitude you fight, you cry, you laugh, you love, and you plunge ahead when you really don’t know what the outcome will be.  You trust, you care, you get mad, you hug, you rejoice in the steps forward, and you worry about the steps back.  You learn to live every single day, every moment, as if it were your last, because it might be.  Your family and friends hurt and cry and want life to go back the way it was, and then they hug, laugh, love, care, share, and keep you so focused on living, that your cancer attitude roars like a lion.  You don’t want to miss a single instant in the lives of those you love.

Cancer creates a life that is consumed by appointments, surgeries, chemo, radiation, blood draws, endless body and psychological changes (how the heck could I know that my fingernails would turn black and fall off or that every single hair on my body would disappear?!) but your cancer attitude is humble and amazed as you are surrounded by oncology nurses, doctors and volunteers who give so much of themselves to make one day better for a cancer patient.

With cancer attitude you learn to be in each day and not to look too far down the road.  You become one with those who lift you up and encourage you every single day.  You know they are fighting right alongside you.  You feel their love, prayers, hope, support, hugs – no matter if they live down the street, in another state or overseas.  You find out what you are made of and that you have more strength, determination and guts than you ever dreamed you had.  You become a warrior with serious cancer attitude.

As I celebrate 4 years since my diagnosis, I am so thankful for my wonderful caregiver husband, Steve.  He was there every step of the way with unwavering love and support, attending every doctor appointment, asking millions of questions and researching a few answers of his own, all while being scared himself.  My children, family and friends never stopped their support and encouragement – always willing to rub my feet, bring food, send cards or emails, flowers, hats, I could go on and on.  My cancer attitude is now one of strength and peace because of my outstanding support system.

That is why I LOVE working for MyLifeLine.org.  Being a part of an amazing and caring team of people who fight for cancer patients every single day is humbling and rewarding. I get to hear stories of diagnosis and treatment, I get to talk to friends and family and help them as they lend support to their loved one and I get to share MyLifeLine.org with doctors and nurses who are on the front lines of this battle. With cancer attitude, you surround yourself with a strong support system of friends and family who develop that attitude right alongside you.  I want to make sure no one ever feels alone on their cancer journey and with my cancer attitude, I am doing just that.

Tricia is the Director of Administration at MyLifeLine.org. We love her cancer attitude!

2011 Cancer Rights Conference

MyLifeLine.org is pleased to partner with the Cancer Legal Resource Center for the 2011 Cancer Rights Conference on Friday, September 23, 2011, in Washington, DC. This free event will provide patients, survivors, caregivers, advocates, navigators, and healthcare professionals with valuable information about cancer-related legal issues, including: employment & taking time off work, health, disability and life insurance options, access to health care, insurance navigation and appeals, understanding health care reform, cancer community resources, genetics & the law, legislative advocacy, and education rights of children and young adults with cancer. Don’t miss out on this free event!

 

To learn more about the Conference and to register today, visit:

 

 

Sponsor Announcement: Xodus Medical joins the Comfort Care Marketplace

Eliminate Vomit Exposure and Spillage

Xodus Medical, a certified medical device manufacturer, specializes in the development of quality surgical safety products for the Healthcare industry.  Although we manufacture medical devices, we offer a product that can be used by consumers.  Our EBag provides a safe and simple solution to emesis containment and measurement, making them ideal for use during side effects from chemotherapy. With a convenient and easy to use closure system, the EBag offers increased infection control by eliminating exposure and spillage and allowing for hygienic disposal. 

For more information or to place an order, please visit http://www.xodusmedical.com/retail/?From=MyLife

bags for cancer patients

Check out the rest of the Comfort Care Marketplace

MyLifeLine.org Ribbon

Tell Someone About MyLifeLine.org

Earlier this week we posted an article about social media and how it benefits cancer patients and their caregivers.

We put the article in our latest newsletter so you can forward it to anyone you know who has been affected by cancer. Check out our July Newsletter MyLifeLine.org’s July Newsletter and be sure tell a friend about MyLifeLine.org

 Tell a Friend about MyLifeLine.org

 There are many ways to share our service so that those affected by cancer can create an online support community and begin benefiting from the connections and inspiration.

  • On our homepage click on “Tell a Friend” in the bottom left corner. This will send them an email about MyLifeLine.org.
  • Forward this newsletter to them, so they can read the article mentioned above and learn about the benefits of social media.
  • Like us on facebook and share our page with your friends. On facebook we’ll post tips, event news, resources, and more
  • Follow us on twitter and you’ll find tips to help someone with cancer, event announcements from MyLifeLine.org and other cancer non-profits, resources for cancer patients, and much much more.

How Cancer Patients Engage in Social Media

“To Hear and Be Heard”

Article recap from Cancer Fighters Thrive  “Social media enhances communication among patients, their caregivers, and their health care team.”  Article by Diana Price

 The most recent issue of Cancer Fighters Thrive had an article about social media and how it can help patients cope with their diagnosis, as well as a lot of other benefits too.

Other potential benefits include the following:

  • Create a community around your journey
  • Share information regularly with those you love most
  • Feel uplifted by messages of support
  • Improve communication with your health care team

Marcia Donziger, MyLifeLine.org Founder and Executive Director stated this in the article,  

“The impact of the service is profound; easing the burden of communicating with a patient’s support community can increase quality of life by opening the channel to receive love and encouragement while getting the patient and the caregiver the logistical help necessary to make it from active treatment to survivorship.”

 The article mentions other sites that build community like Carepages and CancerConnect.com.

 Remember: Anything you share online is public, so only share what your comfortable with.

 Read more articles from Cancer Fighters Thrive

Find more articles that mention MyLifeLine.org on our In The News page

Sorry – poetry by a two time cancer survivor

Sorry

This chemo effects not just physical cells

It’s not just my body that’s feeling so weak

So floppy and useless, just like a wet rag –

My mind, too, forsakes me at critical times

Or is it just lazy, not wanting to think?

Sloping off for a doze when I’m trying to read,

Refusing to give me the word that I seek

And just can’t be bothered to understand things

But by far the worst is the fog on my heart

Just wanting to hide on my own and retreat

From all socialising, it all feels too hard

Forgive me, and know I’ll be back before long

 

 

For more on chemo brain

Chemo Brain Myth from Fox News

Chemo Brain facts from the American Cancer Society

Chemo Brain May Last 5 Years or More from the NY Times 

Prescription Assistance Resource Round Up for Cancer Patients

NeedyMedsvisit site
NeedyMeds is an online information resource of programs that provide assistance to people who are unable to afford their medications and health care costs. Patient Assistance Programs called PAPs, which are created by pharmaceutical companies, provide free or discounted medicine to people who are unable to afford them. Each program has its own qualifying criteria.

American Cancer Society, Prescription Drug Assistance Programsvisit site
There are drug assistance programs for people who:

  • Need financial help
  • Are age 55 or older
  • Have Medicare or are eligible for Medicare
  • Have no prescription drug coverage and live on a limited income
  • Have insurance
  • Want to find out more about Medicaid
  • Want to save money on prescription drugs
  • Want to buy drugs online

Partnership for Prescription Assistancevisit site

  • Co-pay Programs: Co-pay programs provide financial assistance for certain health care costs to patients who qualify financially and medically.
  • Patient Assistance Programs: Many state and corporate prescription assistance programs help patients obtain free or low-cost medications.
  • Savings Cards: For additional ways to obtain free or low-cost prescription drugs, try the following discount drug card programs.

Rx Assistvisit site
RxAssist can help you learn about ways to use pharmaceutical company programs and other resources to help reduce your medication costs.