We are so full of gratitude for the 2019 sponsorship for our navigation program from the Cancer league of Colorado, Inc. This is a fabulous foundation that is committed to supporting cancer research, patient care, and family programs in Colorado. It is an all-volunteer charitable organization that fundraises year-around, and 85% of their funds are awarded for service grants, of which we benefited this year! Please consider a membership or donation and send it to the Cancer League of Colorado, PO Box 5373, Englewood, CO 80155. The link to their website here.
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).
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:
- 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.
- 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.
- 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!
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.
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”.
TONI ABBEY | ONCOLOGY NURSE NAVIGATOR | JULY 17 2017
Ghost Ranch is once again holding its “Holding Courage Retreat for Women with Recent Cancer.” Ghost Ranch is a beautiful spiritually-drawn sanctuary where Georgia O’Keeffe lived and painted in her lifetime. This retreat is a four day event which begins on Monday, August 28th and continues through Friday, September 1, 2017. The 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. Holding Courage Retreats’ guest fees are based on income. The charges range from $30 to $375 for a four-day residential retreat that includes the program, accommodations, and all meals. For more information, please see Ghost Ranch Holding Courage Retreats or contact Deena and Maureen at HoldingCourageRetreats@gmail.com.
What a wonderful event to share with survivors in our region! Thanks, Maureen and Deena for all your work to provide this wonderful experience for cancer survivors.
TONI ABBEY | ONCOLOGY NURSE NAVIGATOR | MARCH 8 2017
Childhood cancer represents many incredible and ongoing challenges for the children and their families. Most childhood cancers in our region are treated at Children’s Hospital Colorado, and the need for psychosocial support for parents whose children are facing cancer in our rural communities is paramount. If you, or someone you love, is in need of support that encompasses others who are going through this journey, register through Summit Psychology at 970-382-2680. The group size is limited and begins at Summit Psychology on Wednesday, March 8th thru Wednesday, May 3rd, from 11-12:30 pm. Our thanks to Tiffany Rose, Summit Psychology, and Jesse Hutt, MD, for helping to meet the need for this parental support! We are so excited to have this therapy available to our community.
TONI ABBEY | ONCOLOGY NURSE NAVIGATOR | MARCH 1 2017
As with Blueprints of Hope’s vision of taking individuals experiencing cancer into nature, the Colorado program for Casting for Recovery was started as a way to take women away from the clinical setting. It is here is where they can relax and share their cancer experience with others who have had the same experience, and also learn the therapeutic and healing sport of fly fishing. The retreats also offer counseling, education and are provided at no cost to participants. In 2017 there are three Colorado retreats being offered. All are at the North Fork Ranch in Shawnee: June 2-4, September 8-10, and one on October 6-8 which is specifically for those with Stage IV Metastatic breast cancer. What a wonderful gift to our communities. Coming from a Montana Girl, there’s nothing more meditative and healing than fly fishing on the river. These retreats fill-up quickly. If you are interested, please register soon at Casting for Recovery.
TONI ABBEY | ONCOLOGY NURSE NAVIGATOR | OCTOBER 12, 2016
The Holding Courage retreats are designed for women who have had or who are currently experiencing cancer. They are offered so women can “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.” Each day ends with a refreshing, star-filled sky of earned sleep within the majestic canyons and mesas which surround the Ghost Ranch in New Mexico. The upcoming five-day retreats are November 9th through 13th, and November 18th through 22nd, 2016.
What a wonderful gift to share with survivors in our region! Thanks Maureen and Deena for all your efforts to provide this exceptional experience for cancer survivors. For more information, please contact them at HoldingCourageRetreats@gmail.com.
Through a grant from the Colorado Cancer Fund, we have been afforded the opportunity to offer this comprehensive patient navigation guide to individuals who are newly diagnosed with breast cancer in Southwest Colorado. Judy Kneece’s Breast Cancer Treatment Handbook includes 242 pages of critical information, with explicit illustrations, teaching step-by-step all things related to breast cancer, including pathology reports and treatment options. The navigation guide also provides worksheets to help organize thoughts and questions to help prepare for care visits with the oncology and surgery teams. All information is presented in a format to assist patients in making informed decisions about their surgery and other breast cancer treatment options.
Our goal is to increase the quality of life for those who are experiencing a breast cancer diagnosis. We have distributed treatment handbooks to many of the surgeons who work with breast cancer patients in Southwest Colorado. If you live locally, please contact us if you or someone you love could use one — we are so happy to share!
The transition from cancer patient to cancer survivor is difficult. Cancer changes lives and its treatment and consequential side effects influence every corner of our patients’ lives. It’s understandable that distress can be considerable through all stages of the cancer continuum. These resources are links to help you lead patients toward support services that can help them navigate and ameliorate the emotional, practical, and physical challenges they face.
The American Psychosocial Oncology Society (APOS) lists the current Clinical Practice Guidelines for Psychosocial Oncology on their website. Included are the NCCN Clinical Guidelines for Distress Management, Survivorship Guidelines, and a link to the NCCN Distress Thermometer and Problem Checklist tools to use to distress level of cancer patients and survivors.
This APOS link also takes you to the American Society of Clinical Oncology (ASCO) evidence-based clinical practice guideline for managing depression and anxiety in adult patients with cancer, as well as the National Comprehensive Cancer Network (NCCN) Survivorship Guidelines.
ASCO Guideline for Screening, Assessment and Care of Anxiety and Depressive Symptoms in Adults with Cancer
The American Society of Clinical Oncology has established this process for adapting to other organizations’ clinical practice guidelines. This article summarizes the results of that process and presents the practice recommendations adapted from the Pan-Canadian Practice Guideline: Screening, Assessment and Care of Psychosocial Distress (Depression, Anxiety) in Adults with Cancer.
DSRT is meant to be utilized after a patient has been screened for distress (for instance, by using the NCCN Distress Thermometer and Problem List). It provides printable problem-focused tip sheets, video education, and webinars for patients to empower them with strategies for the self-management of distress. All content is free of charge to patients, caregivers, and healthcare providers.
This short video tutorial created by Penn Medicine’s OncoLink teaches how to use the Distress Screening Response Tools.
Speak Sooner™ ask questions now, live the answers program approaches the treatment and management of serious illness conversations that must begin with the patient. The Difficult Conversations Workbook (free downloadable PDF) helps patients understand and communicate their questions, concerns, and priorities so they can become more effective partners in their care.
Though we are a group of small communities, we do have some supportive care programs for individuals who are going through different phases of cancer. Blueprints of Hope’s updated list of support organizations in our region includes support groups for grief and loss, caregivers, fertility, exercise, mentoring for hereditary cancers, and those which are specific to individual types of cancers. Building a community of supportive services for cancer survivors is a work in progress, so if you don’t find something that works for your patients, please let us know.