What is “Brain Fog” and why does it happen?

HEIDI NICHOLS | MAY 22 2018

“Brain Fog” is one of the terms given to an array of neurocognitive deficits which are often reported by cancer patients and survivors following cancer chemotherapy and/or other cancer treatments. Cognitive dysfunction can include the loss of ability to remember certain things, learn new skills, or complete certain tasks.

Cognitive changes are real – not imagined – and can cause problems in everyday life, such as short-term memory loss, difficulty concentrating, losing train of thought mid-sentence, mixing-up metaphors, or making up words. It is important to differentiate “brain fog” from reduced brain function caused by sleep deprivation, fatigue, and worry, which can occur even BEFORE chemotherapy or other treatments for cancer begin.

The causes of cognitive impairment are not entirely clear; many factors combine to produce symptoms. Possible factors or contributors are: 1) the cancer itself, particularly cancers of the brain, 2) cancer treatments, 3) complications of cancer treatment, 4) emotional reactions to cancer diagnoses and treatment (stress is a medical condition which can affect brain  physiology).

Please join us to gain a deeper understanding of this condition and learn how to better manage it – there are many tips and tools available. Seating is limited, so take this opportunity to connect to others who are also facing this syndrome by registering for our free workshop here. 

“By becoming an active participant in your fight for recovery, along with your healthcare team, you’ll have a better quality of life.”                                                                                                     Michael Sieverts (10-year cancer survivor and patient advocate).

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Unsafe Disposal of Medications Affects You, Me, and Our Environment

TONI ABBEY | ONCOLOGY NURSE NAVIGATOR | APRIL 28 2018

Throughout my oncology career I have felt a bit unsettled knowing the multitude of medications our patients receive. Many of these medications may go unused for a number of reasons – either the medication stopped working or was no longer tolerated or needed, the treatment regimen was changed, or symptoms were abated. Under most circumstances, unused medication cannot be returned to a local pharmacy – a two-fold issue, as we are responsible for keeping them from getting into the wrong hands, and disposing of them in an environmentally sound manner.

Because most individuals are not aware of how to properly dispose of medications, – billions are  flushed down toilets, drains, and dumped into landfills. Improperly disposing of pharmaceuticals is worrisome, because by default they are designed to alter normal biological processes. Epidemiologists, endocrinologists, and other scientists do not yet understand the full effects of the collective exposure of these medications on humans, and to top that, the sheer volume of medications – including over-the-counter herbs, vitamins and minerals – continues to be increasingly consumed and excreted by Americans every day.

It is most concerning that studies are showing evidence of antibiotics in our sewage, which is contributing to the creation of antibiotic-resistant bacteria. Other common medications found in our sewage are anti-depressants, hormone medications, birth control pills, and other endocrine disruptors, which are chemicals that can mimic hormones and interfere with the hormone system in mammals. Some of these can contribute to the growth of cancerous tumors, birth defects, and other developmental disorders. Because it is so costly to upgrade wastewater and sewage treatment techniques to a system that removes these chemicals, many municipalities do not have them. What we can do to minimize the effects of prescription medications is take personal responsibility to follow accepted standards for the disposal of our own unused medications now. Here’s how: 

  1. Talk to your Pharmacist. Research shows that pharmacists are some of the most accessible healthcare professionals. As medication experts, pharmacists are available to guide you on how to properly dispose of your unused medications.
  2. Never flush medications down the drain or toilet. There are several other methods to properly dispose of medications on your own. Please link to the resources below.
  3. Chemotherapy medications must be treated as bio-hazardous waste. Contact the Specialty Pharmacy that dispensed or mailed you the medication for complete instructions regarding proper disposal. You may also call the pharmacist at the clinic or hospital that prescribed the medication.

Take-Back programs are the safest and most environmentally friendly way to dispose of prescription medications, preventing both misuse and abuse.

In Durango, Colorado, we are fortunate to have a year-round local Take-Back program, which is sponsored by the Durango Police Department. The disposal bin is located at 990 E. 2nd Ave., Durango, Colorado, with a detailed list of medications that will be accepted on Monday-Friday, 8 am-4:30 pm. Take-Back programs DO NOT accept any form of chemotherapy medications.

Where do the medications go from there? Currently the most common way of rendering medications and controlled substances as unusable is through incineration, which is a process that ensures the medication does not get into the wrong hands, or end-up in our community water system.

Please remember that most of our municipal wastewater treatment plants are not designed to treat water for the removal of all prescription and over-the-counter medications and cannot remove most of the chemicals and compounds in medications that are being released directly into our waterways. It is imperative that we all do our part to dispose of medications in the recommended ways to ensure that others and our streams, lakes, and rivers stay healthy! 

Safe Storage and Disposal of Medications (Cancer.Net)
AWaRXe Safe Disposal Site Locator
FDA’s Safe Disposal of Medications – or call 888-463-6332

 

 

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Making Memories and Sharing Gifts from Our Past

TONI ABBEY | ONCOLOGY NURSE NAVIGATOR | AUGUST 12 2017

I have read that the connection to where we came from can frame our vision of where we are going. It seems so naturally-occurring that when we preserve memories, we organically enable our families to embrace their lives. Below I have listed some ideas to archive these memories for them.

1. Make a special box of memories and personal items for each child. Pin a note to each item with a memory attached it. For instance, “This was the outfit you wore when we brought you home from the hospital.”

2. Create a videotape of you reading your child’s favorite story to them. Not only will the memories of you reading together be enforced, but your child will have a lasting recording of your voice. Consider videotaping other ways you spend time with your kids — laughing, playing, holding them, and praying with them. Every time your kids replay these videos they will re-experience the feelings of your presence.

3. Ask your children what their favorite family time memories are and record it. Remembering the past gives your children stability and can serve as a stepping stone helping your children move forward.

4. Share information about where your kids came from – not just about you, as their parent, but of their grandparents, great-grandparents, and extended family. Share what your opinion of events such as “why grandpa chose to keep the farm.” Retell stories and advice that has been passed down through the generations.

5. Make a recipe book with your favorite family foods. Write in the margin whose favorite recipe each recipe was, and for what event you’ve made it. “Violet’s favorite macaroni and cheese – and most requested birthday meal.”

6. Create a Timeline of your life – insert baby and class photos, and photos of hallmark occasions.

7. In your handwriting write your favorite way to say goodnight to your children. “Goodnight my sleepy-time bear. I love you to the moon.” Transfer it onto fabric and sew into a cuddly throw pillow.

8. Photos tell stories. Collect and upload your favorite photos to a movie format, with your favorite music in the background. Make sure to include the entire family and extended family. This promotes the connection to family members and helps cement memories.

9. Identify a unique memento for when your children are older, such as an engraved pocket knife, a watch, a piece of jewelry, a necklace embossed with your fingerprints on them, or a copy of your favorite book. Attach a note to it explaining what it means to you, and why.

10. Make a framed collage of your family’s favorite sayings, who says them, and why they say it, i.e. “Don’t let the bedbug’s bite.”

11. Share your wishes and dreams for each of your children. Record a conversation (either written or by voice) that you would like your children to know about you that they may be too young to know and understand now.

12. Secure a professional photographer or a good friend to snap photos of your family laughing and playing together.

13. Record a story of who you are, where you came from, your extended family, your family traditions, how you met your children’s father/mother, the character traits you saw in one another, and the unusual ways (with examples) he/she is an incredible parent now. Share your wishes and dreams for your family as a whole.

14. Frame a collage or a multitude of your favorite photographs in black and white depicting memories of activities of you and your family, spouse and children. Photographs are images that last forever.

15. Gather a special box and fill it with an array of your favorite scents. Your perfume, your hand cream, and a list of your favorite brand and scent of dish soap, laundry detergent, dryer sheets. Don’t forget to add your favorite scent and brand candles. Scent has a most provocative connection to our memories.

16. Underline everything that strikes you as important in the books you read. Write ideas and notes in the margins. If there is a heartfelt book you would like your children to have, write in the margins, and underline the same in that book. What an incredible way to create a unique connection to your thoughts and ideas that may have played a part in framing your beliefs.

17. Assemble playlists of your favorite music and songs; and create a playlist of songs for each of your children.

18. Write a list of your family traditions, of your parent’s traditions that you have carried on, and why they are important to you. List the holiday traditions and other routines or traditions, such as:

a. A monthly picnic in the mountains, rain, snow or sunshine.
b. Our taco picnic on the river every Summer Solstice.
c. Chicken dinner on Sunday evenings with Gram & Pop.
d. Family Game Night and Family Movie Night.
e. No one leaves the dinner table until they have told the family about their day.

19. Maybe one of the easiest ways to preserve memories is to keep a journal. Add practical advice about living, and character-building advice only parents can share. Offer encouragement. Write the things that bring you joy and contentment, your favorite everything – colors, scents, places and sanctuaries. Share your belief system and your spirituality. What things may you have done differently in your life? Tell about what it was like for you growing up. Add a collection of your personal likes and dislikes and why.

20. Write a letter to each child. It’s very consoling to children to hear how much their parents love them. Include things you appreciate and adore them. Add life advice, and your hopes and dreams for your child’s future. Share the qualities you see in each child and let them know the reasons you know they are going to make the world a better place. Share advice for hallmark moments – graduations, their first date, driving, marriage, childbirth, parenthood, spirituality, and how to find joy in their chosen career. They can read it over and over, and the more they read it the more they will feel your love and connection.

21. Create a scrapbook of treasured quotes, music, lyrics, poems, movies, scriptures, philosophy, and books.

22. Keep a “Do You Remember When” list for each child.

a. “Do you remember when we would turn the rocks over to look for bugs?
b. “Do you remember when we would take the red wagon to the corner store to buy licorice?”
c. “Do you remember the first time we went fishing and you snagged that big fish?”
d. “Do you remember the day your classmates were making fun of Hank, and you came home from school so saddened by how left out he felt, and you gift-wrapped your wooden helicopter, and wrote him a nice letter telling him you would be his friend. I was so proud of you for caring about his feelings.”

Include memories that illicit an array of feelings and character traits you see and is a validation your recognition of those good qualities. Help them remember the times you and the family were there for them, and your feelings about the memory.

Resources
Writing an Ethical Will – Sharing Your Legacy of Values – This website has real-life examples and Kits that can be ordered to help with the writing process. They also have a virtual writing workshop. Celebrations of Life – Past, Present and Future

“This I Believe” is a nonprofit organization which explores values and beliefs of others through brief essays. They also have curricula for middle school children, and above. The essays can be obtained in podcast format, and are wonderful examples of values and character traits to share in your journal. This I Believe

Etsy has some great ideas for jewelry and gifts, as well as many vendors who do have pieces which can be personalized with fingerprint impressions. Etsy

Family recipe books can be made through Shutterfly Recipe Books. There are several beautiful styles to help customize a collection of family recipes with photographs, while adding an unlimited amount of pages. Any type of personalized books can be created through Shutterfly.

Create your own family cookbook online at Heritage Cookbooks. This could be an extended family project whereby all family members contribute.

Make personalized greeting cards and schedule them to be automatically mailed for you. Cards can be designed and scheduled to be sent one year in advance. Treat by Shutterfly

Linkages & Shoestrings has a collection of reasonably priced pre-printed journals with legacy questions for grandparents, parents, and children.

My Daily Journal is a mobile App for the iPhone and iPad to journal on-the-go. Of course, a benefit is the ability to add photographs to the journal entries and the ability to back-up entries.

Please see our previous article in this three-part series, entitled “Creating Meaningful Moments while Facing a Cancer Diagnosis” where we share ways to include our senses to make everyday memories for our families.  In the meantime, check out our Pinterest board – “Creating & Saving Memories”.

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Holding Courage Retreat

Ghost RanchTONI ABBEY | ONCOLOGY NURSE NAVIGATOR | JUNE 7 2016

Over the weekend we visited the Ghost Ranch to experience some of the awe-inspiring spiritual geology where Georgia O’Keeffe lived and painted in her lifetime. While there we discovered an incredible resource at Ghost Ranch specifically for cancer survivors – “Holding Courage Retreats,” which are designated as a week-long haven for women who are experiencing cancer.  Their goal is for women to “spend time in a positive process that melds inner reflection and creativity with spirituality through group discussion and sharing, guided mediation, massage, yoga, body and breath work, and art and music therapy.”  The program ends each day with a refreshing, star-filled sky of earned sleep within the majestic canyons and mesas which surround the Ghost Ranch.  For more information, please see Ghost Ranch Holding Courage Retreats or contact Deena and Maureen at HoldingCourageRetreats@gmail.com. The next retreat is August 21-August 27th 2016, and they will hold two more retreats in November of 2016.

What a wonderful gift to share with survivors in our region! Thanks Maureen and Deena for all your work to provide this wonderful experience for cancer survivors.

 

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Tools for Resilience

TONI ABBEY | ONCOLOGY NURSE NAVIGATOR | JAN 30 2016B&W Couple shutterstock_135636785 (2)

Wendy Harpham, M.D. is a 25-year survivor of non-Hodgkin’s lymphoma, and a fierce advocate and mentor for helping patients become healthy survivors. She is a writer, and a national keynote speaker for cancer survivorship (I was privileged to listen to her speak at a Survivorship Conference in Minnesota.) She has written a wonderful book on resilience along the cancer realm titled Happiness in a Storm.  Along her journey of trying to become a “healthy survivor” she built upon the ‘Serenity Prayer’ or ‘Courage Prayer’ to help her face the challenges treatment and long-term survivorship represent. She credits this to Niebuhr’s work and a Talmudic proverb. This is her beautiful prayer that helped her heal: Read More

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Creating Meaningful Family Moments while Facing a Cancer Diagnosis


happy boys go fishing on the riverTONI ABBEY, RN, OCN | JANUARY 7, 2015

Recently, we have been in a unique position of working alongside several families with young children. Some of these families are facing a serious and potentially life-threatening cancer diagnosis. Therein, there may be an acute sense of urgency to make and save memories with the family they love.

There are various methods of archiving special memories, but in the vein of the rigors of raising a family and facing cancer treatments, just the thought of preserving memories can feel exhaustive and overwhelming. With all of the incredible modalities available to record memories, if energy is at its ebb (which it usually is when treatment is at bay) we find that the easiest way to create memories may be by engaging the full range of your family’s senses. Read More

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It’s True – It’s Really Not About the Bike

TONI ABBEY, RN, OCN  | FOUNDER | AUGUST 27, 2014

We just returned from a highly sought visit to Austin where we were honored to explore the LIVESTRONG Navigation Center and LIVESTRONG FOUNDATION.  The LIVESTRONG Navigation Center has been a much aligned program model for our rural version, Blueprints of Hope.  Sarah Gomez, Navigation Outreach Coordinator, sweetly accommodated us with a preview of the navigation services LIVESTRONG delivers.  The Navigation facility was eye-opening.  They are providing many services Blueprints of Hope provides, but on a much larger scale than for our clients in Southwestern Colorado.  The navigation team, who are mainly licensed social workers – along with the in-house Patient Advocate Foundation representative, assist with the practicalities of negotiating the intricacies cancer presents, and enable the program to have an additional layer which addresses the emotional issues related to cancer. Since partnering with the NavigateCancer Foundation, they are better equipped to offer clinical guidance relating to diagnosis and treatment, as this segment is provided by certified oncology nurses.  Navigation services are provided via telephone, e-mail or in person.  Our communities are one and the same, facing similar barriers – such as those related to accessing care.

Brian Myers, who is the Grassroots Marketing Director, then treated us to a tour of the green-built Foundation building.  Some of us know Brian by his involvement through LIVESTRONG’s presence and association with the Iron Horse Bicycle Classic over the past few years. The Foundation is down-to-earth, possessing cubicles for all (including President & CEO, Doug Ulman) – and a community space that is shared with other like-minded nonprofits.  The Tribute Wall is covered with permanent ceramic replicas of race bibs dedicated in honor or memory of someone who is “fighting” or has “fought the fight.”  There are ribbon-signs of yellow with black lettering throughout, and a wall with the moving invocation of the entire LIVESTRONG Manifesto:

“We believe in Life. Your Life. We believe in living every minute of it with every ounce of your being.  . . .”

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A bird’s-eye view …

bicycle on green meadow

TONI ABBEY, RN, OCN | FOUNDER | JUNE 30, 2014

We are fortunate in Southwest Colorado to have a wonderful cancer care community with an accredited cancer program that works to provide cancer treatment and supportive care throughout treatment and beyond. Our medical community does what they are able to for those experiencing cancer, but as with cancer care everywhere, there are not enough hours in the day to do it all.

The concept for Blueprints of Hope developed when we recognized that once individuals who were experiencing cancer left the comfort and care of their cancer-care providers, many needs remained unmet. This wasn’t because the cancer care they received wasn’t great, but that there are so many needs to be addressed within the cancer care realm. It’s a systemic problem, and happens across the spectrum of cancer care everywhere.

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