Sending Practical Actions

Yesterday morning, I went on Facebook to post in a support group for young breast cancer patients and survivors. I got connected to this group Young Survival Coalition at the recommendation of another survivor shortly after I was diagnosed. After reading the website, I signed up for their Facebook group as soon as I realized they had one.

Since I joined the online group, I’ve mostly read other people’s stories, comments, questions, fears, and victories in their battles with breast cancer. Sometimes their fears have amplified mine, but their hopes also have given me hope when mine felt low.

As a newbie to breast cancer, I got to learn about terminology, resources, and other issues that I otherwise wouldn’t have known had I not joined that online group. More knowledge can be both disconcerting and comforting; therefore, I have to be very mindful of how I interact with the page. Overall though I find the benefits to outweigh any discomfort I feel from reading patients’ and survivors’ challenges and fears. We all need an outlet to share our unfiltered thoughts, and that forum serves that purpose.

This online support group for young breast cancer survivors is the opposite of content that I find highly annoying online, and that content is inspiration porn.

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Photo from Flickr

There’s nothing like inspiration porn to make me roll my eyes, especially as I undergo cancer treatment during the global pandemic known as COVID-19, or the Coronavirus.

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Too Busy to Play Telephone: Practicing Consent as a Lifestyle

During my first few weeks of recovery from surgery, my family visited me. My sister flew in a couple days before my mastectomy and stayed for a week. She overlapped by a day with my parents, who stayed in a hotel near my home for almost a week and a half.

By the end of my parents’ last visit with me, my mom raised the topic of how people didn’t know how to talk to me. That is why some of them hadn’t said anything to me about my breast cancer diagnosis.

For context, this is an issue that came up quite a bit after I was initially diagnosed. My sister asked what she could share. A few cousins asked what they could share. Somehow other members of my extended family aren’t sure what they can or cannot say about my diagnosis to others.

Some relatives wanted to share my story with others, and other relatives were saying that they shouldn’t. I heard this from a few different sources in my family.

My mom said that some relatives told others to “just pray” for me—or at least that’s the story in this never-ending game of telephone.

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Image from Flickr

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Courage, Strength, Hope

I haven’t written here in two weeks. In case you were wondering why, it’s because I got a mastectomy a couple days after my last post. I’ve been adjusting and readjusting to my new body.

If you regularly meditate or do yoga, you’re likely familiar with the concept of the mind-body connection. Well, my mind-body connection is so thrown off. My mind and body are confused. This week, a social worker at my hospital told me that this feeling is normal. She said my mind and body are working to reintegrate their connection to each other.

Prior to my mastectomy, I was so scared of how I would feel when I woke up without one breast after the operation.

After my operation, I woke up with a nurse beside my bed in the recovery room. After a few minutes (or what seemed like a few minutes) of her asking me how I felt, another woman pulled open the curtain around my bed and walked in. This new woman introduced herself as a chaplain of the hospital.

“You’re Regina?” I asked. Yes, she was surprised that I knew her name. I explained that another chaplain had referred me to her and told me to expect a visit after surgery.

Regina asked how I was, and unexpectedly I had a lot to say. My throat hurt from whatever tubes the doctors had put down my throat, but I recall a lot of word vomit. Since it was my first time meeting Regina, I recounted the events of my discovering the lump in my breast, steps I took in my medical care, and the shock I was feeling post-operation. I was surprised how much I had to say. I was feeling light-headed and/or dizzy from anesthetics and medication (and continued to feel that way over the next couple days), but that didn’t stop me from being talkative. I think I was word vomiting because I needed some way of immediately processing everything.

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When the Caring Person Needs Care

More than a month and a half after I received my breast cancer diagnosis, I attended a support group for women who had all types of cancer. During the latter part of the session, a breast cancer survivor introduced herself and wanted to find out what brought me to the group. After learning that I was newly diagnosed with breast cancer, she gave me her contact information and offered to talk to me further about resources.

Within a few days, I emailed her, and we were able to talk on the phone a day later. She shared her story with me, outlined the challenges she faced, and provided advice for my next steps.

“Get a Keurig, ” she told me. I almost told her that I was a tea drinker, but I was intrigued by her specific recommendation. I asked her why she suggested a Keurig. Then she explained that people could serve themselves when they visited me. I wouldn’t have to worry about serving them.

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Photo from Flickr

Something about her recommendation sat with me in a funny way. I couldn’t put my finger on why. Then it occurred to me how much she had thought about serving other people when she had been the one in dire need during her recovery.

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Living Both Like You Have No Tomorrow and Like You Have a Century Left

As I get closer to my surgery date, my mind, heart, body, and soul have increased in their capacity to feel a wide range of feelings simultaneously—even when those feelings seem to be conflicting.

I want to live both like I have no tomorrow and like I have a century left.

One minute I’m eating a large breakfast of eggs, tater tots, and corned beef hash for comfort, and the next I’m sipping on a smoothie for its nutritional value.

One day I’m brainstorming all of the jobs, side hustles, and GoFundMe campaigns I will need in order to pay off my medical bills, and the next I’m planning adventures like Luisa in Y Tu Mamá También.

Do I want privacy, community, or intimacy? Do I feel like screaming, crying, or laughing? I don’t know. All of the above?

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Photo from Flickr

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Networking and Negotiating for Healthcare

I have received some sweet offers to get my mind off of my health situation, but I’ve had to decline them because I’m so busy networking and negotiating for healthcare.

I’m no stranger to the topics of networking and negotiating. In fact, yesterday I facilitated a workshop on those very topics for students with respect to their career development.

Now I’m applying the transferable skills of networking and negotiating to my healthcare.

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Photo from Flickr

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To Manage My Tone or Not

If you’ve ever known someone with a serious health issue, chances are that person lied to you at some point. It might not have been a major lie, but they might have sugarcoated their feelings in one conversation or another.

Since I shared my diagnosis with in my social circles, people have connected me to their friend, family member, colleague, or other contact who has dealt with breast cancer. When I talk to the connectors, they emphasize how strong, resilient, and inspiring their contacts are.

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Photo from Flickr

Then I talk to their contacts, and I realize how much those contacts have lied or sugarcoated the truth for others in their lives.

I’m not here to do that.

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The Art of Dialogue: What to Do When You Don’t Know What to Say

As many of you know, last fall and winter were hard for me because several important people in my life either passed away or were managing health issues that forced them to confront their own mortality. The following summer, I had to manage my own health scare with a visit to the ER. Thankfully, doctors were able to figure out that I needed an appendectomy. Fast forward to this winter, I felt a lump in my breast and found out I have breast cancer. Since then, I have been pretty real with myself and others about what that shock and mourning process have been like.

As I’ve opened myself up to sharing my experience, I’m learning a lot about myself and the world. I’m navigating medical appointments, healthcare bureaucracy, health insurance, financial implications, work life, home life, spiritual attitudes, body image, and self-worth in ways I haven’t before … That’s surprising to me because I already have had quite a colorful, adventurous, and unpredictable life. Just when I thought I couldn’t be shocked anymore, the Universe decided it was time to let me know that I had cancer growing inside of me.

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Photo from Flickr

Since I’ve shared more of my story, people have reached out and asked me about my situation.

That’s where things have gotten interesting.

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Rethinking Gift Giving: I’ve Been Doing It Wrong

Years ago, I was cycling between unemployed and underemployed for almost a year. Grant-funded job, unemployed, part-time job, temp job. I had every job, but one that was full-time with benefits despite my best job search efforts.

During that period, I saw a therapist. When I told her that I had to stop seeing her due to financial constraints, she insisted that I pay her on a sliding scale. I did that for a while. At a certain point, I started to wonder if I could make the sliding scale payment. Then I told her that the sliding scale payment was no longer feasible; therefore, I would stop meeting with her. She replied that I could start having appointments with her without having to pay the copay.

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Photo from Flickr

During one of those therapy sessions, I reflected on my financial situation and wondered if I would ever end up doing a fundraiser on GoFundMe like I saw one of my former colleagues doing online. Apparently, that former colleague had hit such hard financial times that she shared her GoFundMe campaign on social media. In her post, she explained how much she had to swallow her pride to do what she needed for her family. I respected that. As I explained her situation to my therapist, I could see her eyes get wide. She looked shocked and appalled. That is when I decided to drop the topic.

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Let People Love You: Community Care Knows No Boundaries

I’m no stranger to promoting self-care. On this blog, I’ve discussed how to Start Your Day on a Positive Note, Real Self-Care When Your Life Isn’t Paradise, Dealing with Long-Term Stress, and how to Make Over Your Life … Gradually. These posts address how minor and major actions can have a cumulative effect on how you can survive and thrive through hardship.

Self-care is a process, not a product.

When I haven’t discussed self-care, I’ve told you all to Create More Space for Kindness and Don’t Forget About the World Around You. In those posts, it was about creating more space to care for others and cultivate change in the world.

My past posts haven’t talked explicitly about community care—specifically community care for yourself.

In the Mashable article Self-care isn’t enough. We need community care to thrive., Heather Dockray states, “Unlike self-care, community care does not place the onus of compassion on a single individual … Community care involves more than one person. It can include two, three, or possibly hundreds of people. You can practice community care in your personal offline life or even in digital spaces.”

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