Jan 19

Life Goes On

“Life goes on” nowhere more do these three words
Drive you insane
Cause a pain deep within your heart
Cause so many tears
How can life go on when you’re dealing with cancer?

At first I thought these three words only had the ability to hurt me while I was dealing with
Chemotherapy
Radiation
Herceptin
As I wrestled with my own hell called treatments, how could life go on around me?

How can people complain to me about their
Aches and pains
Arguments with their coworkers and friends
About their colds and coughs
When I can’t even think about tomorrow?

I made peace with cancer by focusing on
My kids
My faith
My sense of humor
Helping others

Just as you think you’ve attained peace,
Your best buddy gets the news,
Your cancer has metastasized,
It doesn’t look good,
And life goes on…

Rose

Nov 04

Do Something

RoseI want to be thoughtful about writing about this piece. It’s heartbreaking. It’s real. And for me as someone who has had cancer, it is so frustrating and maddening.

Last month I had lost a friend to metastatic cancer…

8 years ago, I lost a heart-friend to metastatic cancer. It was because of her I became so involved with cancer advocacy, cancer education and the anti-pinking of cancer. She had such an impact on me.

Because of my heart-friend, I took a stand about the “upbeat cancer patient” and advocated for being real and honoring your feelings. I didn’t find cancer sexy. I didn’t like how having cancer was becoming like “belonging to a club.” A club!

I didn’t find it OK that we were spending all this money on awareness – we are so beyond awareness and I stopped supporting a few organizations financially who spend so much money on awareness and pink ribbons… How about spending more on supporting the cancer patient?! For finding and eliminating the cause of cancer?!

And now one of my good friends loses her friend, this friend in this story. This story is powerfully written, it hurts to read such a story, it hurts to think of the 108 women who die daily from cancer…

108 women… It’s personal. It’s political. It’s horrific.

Do something. Speak up against cancer. Advocate for increased funding and for tracking metastatic recurrence! Support this researcher mentioned in this story. Do something. Be mad. Move beyond awareness!

Beth Caldwell’s impact on metastatic breast cancer

#nomorecancerdeaths

 

Oct 01

Anti-Pink – Another Perspective

Stop Pinking of CancerPink: cute, feminine, sweet, playful, tender

Cancer: a disease in which abnormal cells destroy body tissue. There are more than 100 types of cancer.

NOW WHAT IS CUTE, FEMININE, SWEET, PLAYFUL OR TENDER ABOUT CANCER?! NOTHING!

Pink also means Pink Ribbons, which we are attacked with every October – to celebrate breast cancer awareness and “honor” survivors… I do not support the pinking of cancer.

I like the color pink – it looks great on me, but you won’t catch me wearing a pink ribbon. Couldn’t pay me enough. And before you get your skirts in an uproar or your pants in a bunch, I am a two-time cancer survivor, and I did not find my experience cute, feminine, sweet, and there certainly nothing about it that was playful or tender about it either. Cancer was a disease that I had to learn to cope with, and work with, and work through. Cancer caused me one too many sleepless nights because of side-effects from treatments, but mostly from worrying about WHAT IF? Not only did it affect me, it affected my family because they also worried about WHAT IF.

Since my dance with cancer, I have lost several friends to breast cancer, and there is NOTHING cute about this.

According to the Center for Disease Control, “In 2014 (the most recent year numbers are available)—

  • 236,968 women and 2,141 men in the United States were diagnosed with breast cancer.
  • 41,211 women and 465 men in the United States died from breast cancer.”

(Source: https://www.cdc.gov/cancer/breast/statistics/index.htm. Want to see how breast cancer stacks up against other cancers: https://nccd.cdc.gov/uscs/toptencancers.aspx.)

Now with this many people getting breast cancer and dying from it, I think we are way beyond “awareness.” It is time for action and demand that funding goes towards supporting those who are facing cancer with financial, medical, and psych-social services AT A LOCAL LEVEL FOR ALL PEOPLE WHO HAVE CANCER. Demand that the money goes towards cancer survivorship services, towards patient navigators who help those who are facing cancer. Demand that the money goes towards to stopping breast cancer from taking another life!!!!

We need an anti-breast cancer campaign, not a pink campaign, not an awareness campaign – we need ACTION NOW!

So, don’t ask me to wear pink for breast cancer or support a pink cause. I provide support by being an anti-cancer advocate, a cancer story facilitator, a survivor advocate, and providing and interpreting cancer information from medical sources to share with others. I also provide financial support to organizations who are beyond awareness. Please think about why you are supporting a certain organization before you donate, and please, please think about not supporting the pinking of cancer.

Gunalchéesh, Quyana, Bassee, How’aa, Taikuu, Tsin’aen, Igamsiqayugvikamkin, Qagasaakun, Chin’an, Thank you.

Sharing Knowledge About (not using) Pink:

Think Before You Buy Pink: Critical Questions for Conscious Consumers

History of the Pink Ribbon

Pink October’s Predecessor – “Before there was breast cancer awareness, there was tuberculosis advocacy. It was a lot more effective.”

Want to help someone who is facing cancer directly? Adapt the tools from Share the Care or Meal Train:

https://www.mealtrain.com/

https://sharethecare.org/

Aug 28

Heavy Heart

Pondering deep thoughts about cancer… I’ve been doing cancer education and outreach for about 9 years now… It was a good friend of mine who I went through chemotherapy with that convinced me that I needed to go out and be cancer warrior for our people and do something about cancer education and support with Alaska Native people…

I was a better person with her; she was such a beautiful person and it was in her honor that I went forward into the cancer world, even though I wanted to quit when she passed. My heart still aches for her at times, sigh.

Now 9 years later, I lose another friend to cancer. We also went through cancer treatments together. Hers metastasized 🙁 but she faced the years of treatments, the years of ups and downs, with such grace, humor, and realness. 9 years, and today, she walked on. She knew since Aug. 12th that the end of her long journey was coming to an end, she knew… I just couldn’t imagine, but she said she was tired, and it was now in our Creator’s hands. Sigh.

Today, I have a heavy heart.

Today I am thinking how it was a friend and a fellow cancer survivor that got me on this path of being a cancer warrior, and now it’s the loss of another friend to cancer has helped me to decide it is time to get out of the cancer education field. I’ve been thinking about this for awhile now. I’m not being negative, I just been thinking it is time to help in other ways.

Cancer education and outreach is heart-full work, no two ways about it, but I’ve been getting to the point where I’m frustrated with the lack of support for Alaska Native and American Indian cancer survivors. I’ve been frustrated how  there is no funding to help with “living beyond cancer.” I’m frustrated how some people, doctors or “experts” think they know more about how cancer affects us but they just don’t understand about the hardship cancer causes us. I’m frustrated because instead of being told to honor our feelings and our cancer story, we’re told to “think positive” or “quit being so negative” 😛  Honoring our feelings is the most positive thing we can do for ourselves – we are the ones who are living in it, with it, around it, and hopefully through it… and honoring that story is one of the most important things we can do to put us on the path to healing and living beyond cancer.

I’ve been frustrated for awhile, and the loss of another friend, may just be the sign I needed. I knew that being a cancer warrior is no more for me, sigh. I just don’t have it in me any longer.

I’ve been wanting to do more with our traditional arts and stories, to create beauty out of something that can be not so beautiful, and maybe it is time to switch gears and help others to share their story and arts. I think this is a way I could keep helping, but honestly, I just don’t know any more…

Please be gentle with yourself, and with one another. I wish you peace, wellness, and strength.

Resources for Dealing with the Loss of a Friend/Loved One

Coping with Grief by Cancer.Net

How to Help Someone Who Is Grieving by Cancer Care

Support for Caregivers: When Someone You Love Has Advanced Cancer

Helping Someone Who’s Grieving by HELPGUIDE.ORG

 

Jul 05

Cancer Affects All

Gunalchéesh to this storyteller for sharing her story. Cancer affects all who is around the person facing it directly, be gentle with one another, help one another, and remember to care enough for yourself, your family, your loved ones, and get your cancer screenings OK?

P.S. This storyteller talks about Grade in this story. Grade is how fast a tumor will grow, and stage refers to it’s size and whether it has spread to other parts of the body (http://blog.dana-farber.org/insight/2013/06/whats-the-difference-between-cancer-grade-and-cancer-stage/).

May 21

Good Words

If you know someone going through cancer, don’t wait for them to ask you for help, don’t give them advice, don’t tell them to think positive… Honor where they are at and their feelings. Be gentle with one another, and just be a good friend. To all those who are dancing with cancer, I wish you peace, wellness, and strength. May the Creator be with you (Click on image to open up the article.) Helping Friends With Cancer

May 07

If I Only Knew Take 2

When I was going through cancer the second time, I had to have some heavy-duty cancer treatments that involved: chemotherapy, radiation, herceptin, zometa and 5.5 years of Arimidex, a hormone-suppressant. Cancer treatments was one of the hardest things I had ever done and have wrote many times about it and how to get through it.

Circle of SupportBack in 2008 I wrote “If I only Knew“, and many of the things I wrote back then can apply to today still. When I was going through cancer treatments, asking for help was not something I was comfortable with, and tried to barrel through it like I do anything hard in my life 😉 but I realized, with cancer, barreling through is not enough. You need a helping hand

Nowadays, there’s places online, where you can organize folks to help out the person who is dancing with cancer, here’s two of them, and I hope, if you ever have cancer, you’ll asking for help, and if you know someone who is going through cancer, be specific in saying what you can help with. Please do not just say, “if you need anything just let me know” because most people dancing with cancer will not let you know. Be gentle with one another, help one another, and I wish us all peace, wellness and strength ♥ 

Share the Care: Creating a Strong Support Network

Meal Train: Organizing Meals

Apr 16

Be in a Good Place

When I was going through chemotherapy, beading was one of the ways that helped me through the stress. It brought me to a peaceful place as I remembered my grandma who taught me to bead. She always said before we beaded, that we needed to be in a good place before we make our beadwork Beadwork continues to bring me to a good place.

Why We Bead by Laura Revels

To bead is to pray,
To pray is to heal,
To heal is to live from the Heart,
To live from the Heart is to Walk in Beauty.

Please take care of yourself I wish you peace, wellness, and strength

Beaded Bear

Apr 12

Understanding Cancer

Cancer BasicsI am happily sharing what we are learning from developing our online cancer education course, and what helps our course be so wonderful is the stories, we have used digital stories throughout the course to demonstrate and to share knowledge around some difficult conversations or to help understand certain things about cancer. Thank you to all who have been helping us with this learning experience! p.s. if you’re interested in taking these cancer modules, it is a free online course, and you’ll have to register one time to access them, and after that, you’ll just have to login. The classes may have been made for CHA/Ps but anyone can take them, they are written in a way that is understandable for even community members. Here’s to changing the story of cancer in our communities!

Here’s the link to the published paper:

“Culturally-Relevant Online Cancer Education Modules Empower Alaska’s Community Health Aides/Practitioners to Disseminate Cancer Information and Reduce Cancer Risk”

Here’s the link to the modules:

The course is called Cancer Education – Continuing Education: https://anthc.remote-learner.net/course/index.php…

You will have to register one time and then login afterwards to take each module. There are 10 all together, but you don’t have to take all 10, just the one(s) that interest you. I wish you peace, strength, and wellness.

 

Apr 06

Just Don’t

When I was going through cancer treatments I got to the point where I would just absolutely go tone-deaf when someone started to give me “advice” on dealing with cancer, or tell me if I just did this or that I could “cure” my cancer. Really?!?! I use to think I needed to be understanding when people did this as they were just trying to be “helpful” but it wasn’t helpful. It left me angry sometimes. Sometimes I was sad because people just didn’t get it, they just didn’t get how cancer turns your life upside down, how you are looking at your own mortality, and how frightening this can be…

Please be gentle with one another, and if you have a love one going through cancer, try other ways to just be there for them, but don’t be offering “advice” or telling them that they brought it upon themselves, please don’t…

(Click on this article that talks more about what not to talk to cancer patients about: Don’t tell cancer patients…)

Article from the Guardian's Photo