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Orlando Mom’s Blog: https://orlando.citymomsblog.com/?s=Abigail+Johnston+&submit=Search

Wildfire Magazine: you should do yourself a huge favor and just subscribe to Wildfire right now. The online/digital subscription is fine but the physical subscription where you get a magazine chock full of amazing writing by men and women living with Stage IV metastatic breast cancer in a convenient purse sized paper edition. I’ve written several articles that have been published and if you sign up for a years worth subscription, I’m happy to autograph any article of mine you end up with!

Cancer diagnosis story and updates: https://itsabouttimemets.com/mets-stories/abigail1

SurvivingBreastCancer.org: https://www.survivingbreastcancer.org/abigail-johnston

Nancy’s Point: https://nancyspoint.com/storm-cloud-abigail-johnston-metsmonday-featured-post/

Global Girl Community: https://globalgirlcommunity.com/Living-Life-Like-Youre-Dying-When-You-Really-Are/

Living Beyond Breast Cancer: https://www.lbbc.org/blog/my-initiation-new-world

AdvancedBreastCancer.net

  1. https://advancedbreastcancer.net/living/scars-seen-and-unseen/
  2. https://advancedbreastcancer.net/living/ask-the-advocates-relationships/
  3. https://advancedbreastcancer.net/living/coping-metastatic-diagnosis/
  4. https://advancedbreastcancer.net/living/coping-cancer-related-fatigue/
  5. https://advancedbreastcancer.net/living/functional-allopathic-medicine/
  6. https://advancedbreastcancer.net/living/medical-mistakes/
  7. https://advancedbreastcancer.net/living/atm-mutation-part-1/
  8. https://advancedbreastcancer.net/living/coping-metastatic-breast-cancer/
  9. https://advancedbreastcancer.net/living/metastatic-breast-cancer/
  10. https://advancedbreastcancer.net/living/preparing-death/
  11. https://advancedbreastcancer.net/living/estate-planning-terminal-diagnosis/
  12. https://advancedbreastcancer.net/living/medicaid-medicare/
  13. https://advancedbreastcancer.net/living/language-matters/
  14. https://advancedbreastcancer.net/living/integrated-medicine/
  15. https://advancedbreastcancer.net/living/divorce-terminal-illness/
  16. https://advancedbreastcancer.net/living/hair-loss-side-effect/
  17. https://advancedbreastcancer.net/living/recommended-conferences/
  18. https://advancedbreastcancer.net/living/tips-stay-healthy/
  19. https://advancedbreastcancer.net/living/advocacy-social-media-platforms/

Self Care

I’ve seen quite a bit recently about how important it is to practice self care. Self care looks very different for different people and, I believe, can reflect the personality of the individual. I confess that I’ve not always been particularly good at self care and I would often push myself much farther than I probably should have to meet whatever goals I thought were important at the time. That was before cancer. Now, while I still have a ways to go, I have gotten better.

In no particular order, here is my list of the things I do regularly to take care of myself and how those things fit into my personality.

  1. I’m an introvert, which means I get my energy from being by myself. I love to read and passed my goal of reading 365 books in 2019 in the beginning of September. While I do enjoy being around other people, having the freedom to be myself more has been one of the best things about being home rather than working.
  2. I enjoy being helpful to others, it gives me purpose and when I’m able to be useful to others, it reminds me why I went to law school. Being able to pull back and protect myself is a luxury these days that I don’t take for granted. My version of self care is learning to say no more often when I find myself stressed for no real good reason.
  1. I carry emotions in my body rather than letting them out. This means I need to participate in activities that help me get it out, but also take care of my body. I go to yoga 3 times a week as regularly as possible. It really helps. Also, now that I’m blogging regularly, I’m able to get the emotions out into the world where they belong rather than festering in my body.
  1. I love to learn new things. I really like understanding how things work. Now that I’m immersed in learning about medicine and cancer and how the body works, sometimes I wish I’d taken more sciency classes rather than the literature classes I loved in college, but those years of handling medical malpractice cases and car accidents has had a silver lining.
  2. I get regular massages. I used to get them more infrequently and it helped, but I just didn’t make time for them as much as I needed to. Now, I don’t miss a massage if I can help it.
    Before I got sick, I only went to the doctor when I absolutely had to. Now, I see a variety of medical professionals whose entire focus is my quality of life. Yes, I see lots of doctors who are focused on my cancer too, but that is balanced by the doctors who are there to look out for me and my ability to do my life.
    Before I got sick, I literally only took a vitamin daily. I’ve never liked swallowing pills generally but that wasn’t really the reason, I just really didn’t like taking medication. Now, I take a handful every day. Some are prescribed meds, others supplements, others over the counter meds to address side effects.
    Before chemo, I’d never taken drugs that were not legal. I did get drunk once in college and took one drag on a cigarette. Neither happened again. Now, I have a medical marijuana card and I use cannibis to address a lot of different issues, including, but not limited to, pain, nausea, anxiety and inflammation.
    Before I got sick, I never sought out mental health treatment. I weathered quite a few experiences without needing extra help beyond my own trusty coping mechanisms. Now, I see a psychiatrist regularly and I take medication daily for mood stabilization. A great “off label” use of the same medication is that it reduces my hot flashes.
    SLEEP. I never prioritized my sleep as much as I do now. Everyone is happier when I do.

Self care is vital, it is necessary for … as the saying goes … you can’t pour from an empty cup. How are you filling your cup today?

Showing up

What does it mean to show up for someone?

I’ve thought about this quite a bit over the past several years. Prior to breast cancer, I would have focused only on tangible things. Like literally showing up at an event, delivering a meal or donating necessary time. I still think of these things first. I’m a do-er as I’ve often said. That being said, I do still think that showing up does contain a physical component.

What is less tangible is the emotional support of showing up for someone. I wrote a post earlier this year on “Holding Space,” and I think there are a lot of similarities between the two.

Yet, there are some fundamental differences too.

In my mind, you have to first show up in a meaningful way to be able to make an impact holding space for someone. I also wonder if a person doesn’t know you are holding space for them, is that still helpful? Do you need to tell the person you are doing so? Maybe a little too existential for me.

So, to me, there is a physical component to showing up, and to holding space for someone else. Showing up is extremely important in life and becomes especially important when there has been a trauma. A trauma could be a death, a diagnosis, a serious illness, a job loss … life is full of trauma and some of us get more than others.

When a friend has experienced a trauma, here are my tips for meaningful ways to show up …

  1. Actually show up — visit the hospital, the rehab center, the person’s home.
  2. Set up a meal train. It’s an amazing tool that makes it easy to organize meals for someone who is struggling to do so. People can send money or food and it’s easy to open up or close dates.
  3. Send a note, a card, a letter, a carrier pigeon, an email, a text, whatever method you use to communicate to others. Don’t expect a response right away or maybe never, the point is the effort to reach out and to continue to reach out.
  4. Schedule a play date, with or without adults and with or without wine or maybe some medical marijuana.
  5. Drop off cookies or fruit or chocolate.
  6. Show up at gatherings, for the person experiencing trauma, and ask them about normal life stuff, NOT cancer.
  7. Send a present … this could be a book for bookworms, bath stuff, essential oils, jewelry … pampering gifts are always appreciated. Also, sending spoons is a great website for gifts for people with chronic/ongoing illnesses.
  8. Schedule a spa date! Getting a pedicure, drinking something fun, and having good conversation is a recipe for an amazing afternoon.
  9. Schedule a vacation or a staycation together.
  10. Just keep showing up.

One of the most painful things about the aftermath of a trauma are the people who leave. I don’t fully understand why people don’t stick around. I’m sure some of it has to do with the fact that life changes and maybe relationships have more to do with convenience or proximity than actual connection.

This is what I’d like each of you to remember, when someone you know or care about has experienced a trauma, they need you more not less. When someone you know or care about is struggling, rather than being concerned about what you say, say something. When someone you know or care about has experienced a trauma, lean in and show up. You will experience dividends in return.

Book Review: Flash Count Diary; Menopause and the Vindication of Natural Life

Finally, a book about menopause that I wholeheartedly agree with. Like the author, Darcy Steinke, I’ve attempted to understand the affects of menopause rather than medicate it all away. The author talks about the mainstream menopause authors and how each falls prey to the traditionally male conclusion that aging women must take hormone replacement therapy to be normal.

Why do men recoil from a woman’s normal biological functions?

Menstration, childbirth, breastfeeding, menopause; each natural phase of a woman’s life is marginalized, thrust away and hidden.

But what if it isn’t? The author seeks out aging female animals in an effort to see what happens “in the wild.” She finds examples of aging female leadership and how that is venerated among specific animal populations. Why not in the human population?

The discussion about how the author modeled femininity and her relationship to her body to her daughter was fascinating. The author’s intentional decision not to mimic the same behavior that made her feel less or that she didn’t measure up to her daughter is both admirable and honorable. Her daughter’s horror at beginning to understand how the patriarchy view women and their bodies is classic.

In her chapter on Demonology, the author explores how women are demonized because of our emotions and how menopause, while not fun, is utilized to further sideline women. The symptoms of menopause and how women’s bodies ages different from men becomes synonymous with witches, evil, sinister, and death.

While being open and frank about how bodies change, the author does a great job of exploring how sexuality changes over time, how desire changes over time, and how sexual intimacy isn’t the only form of intimacy for partners. On the other hand, with the childbearing years or opportunities in the past, menopause can offer a different freedom, once the physical pain is resolved.

Yet, why are women and our bodies constantly defined by and in relationship to a man’s?

From viewing how animals deal with the aging female, the author gratefully concludes that female whales teach us that it is not menopause itself that is the problem, but menopause as it is experienced under patriarchy. In the wild, the aging female is not sidelined, but revered.

Menopause is not just physical or biological, but also metaphysical. It is thus harder to define and also defies one’s ability to provide a road map to others coming after.

The author concludes …

Sometimes I think how silly, how human, it was to feel I needed an antidote for menopause: it’s like trying to cure a rainstorm, a tulip tendril or nightfall. As a younger woman, I was led by my biology; now I’ll let the spirit tug me along. When I wake in the dark, incandescent with heat, I pray not to a deity up in the sky, but to the beauty of this world. I pray the body, I pray the lake, I pray the whale.

Changing the World

I saw the meme below on Facebook some time ago and it made me chuckle. And then I thought, is this really funny? Why would I automatically find it funny? Could have been the person who posted it or could have been the context.

I believe the concept behind this meme, strongly.

Here in the United States, I think that we women are placed in a socially constructed box where we are held to a different standard. While I practiced law, this different standard was applied to me in a variety of ways. I don’t play games well. If I don’t like someone, they usually know it. I don’t always package things diplomatically, preferring a direct approach to an emotional one.

These preferences often meant that I found myself not quite comfortable with my male or female colleagues. They probably didn’t know quite what to do with me. Also, the fact that I didn’t much care about their opinions didn’t resonate well, especially since I doubt they missed my lack of care.

The women who challenge the patriarchy, in whatever way that makes sense, are labeled. Rather than assertive, we are called aggressive. Rather than a leader, we are called a bitch. Rather than evaluating us on the merits of our talents or our experiences, our clothing and appearance are picked apart.

I’ve experienced this.

I’ve also experienced discrimination from other women who made different choices than I did. When I was focused on pumping breast milk while litigating after my boys were born, it was the female judges (some of the them) who were harder on me than the male judges. I lived this and I had to advocate for myself, my children, my choices.

I know other women who did this, who paved the way for women like me who came afterwards. I know women who I felt were my sisters in arms, women who worked harder and longer and smarter. Women who put up with slurs and being treated differently to rise to the top.

These experiences are not restricted to the legal field. Women are treated differently everywhere. Women make the choices that are right for themselves in terms of how to challenge whatever system they choose to participate in. I respect the various choices I’ve seen made and followed.

But.

What I do not respect are the women who behave like mean girls, who bully others to get their way, and use disrespectful personal attacks to get their way. Using these tactics to harm others, to get what they want, that’s not honorable or admirable.

The meme above doesn’t apply to people who behave badly, who do not do what’s right, who don’t build some bridges, who make no effort to understand another’s position. The meme above applies to women who do speak out, speak up, lean in, present the reasonable arguments, the facts, and simply do it better. We women are better when we support each other and don’t tear each other down.

We all need to do better, especially those who have been placed in positions of leadership.

Did you know?

While I’ve added my own words and experiences to the blog posts, the informative metastatic breast cancer graphics were created by Andrea Parker, who was born only a few months earlier than I in 1978. Andrea created the graphics with Ginny Knackmuhs offering the statistical information for them.

Andrea’s life was stolen by MBC in September 2018, at the age of 40. Another young woman, a fierce advocate who sought to increase awareness about MBC, worked to educate the public about this disease, while pleading for more research funding to decrease the death rate, currently at #116dyingdaily, from this insidious disease.

I’ve tried to continue what she started, to focus on education each October, which is sometimes called Breast Cancer Awareness Month.

Will you take up the mantle? Will you educate others every October after I’m gone?

Breast Cancer Facts, 10/31

We survived. We got through Breast Cancer Awareness month. October aka Pinktober aka Crooktober aka Stinktober is my least favorite month of the year. Why? Because it isn’t helpful to us who are living with Stage IV and then it ends and no one pays attention any longer.

Living with Stage IV metastatic breast cancer is a 24/7, 365 day per year experience. Those of us living with it never get a day off and it only ends when we’re dead. Think about that. Don’t stop paying attention just because one month is over.

Breast Cancer Facts, 10/30

It’s difficult to find reliable statistics to definitively prove all of the statistics in this or some of the other educational posts I’ve posted because the people who are initially diagnosed at an early stage (I-III) and then progress to Stage IV are not counted. We do have two data points that are helpful, the total number of people living with breast cancer who have not yet died and the number of people diagnosed Stage IV de novo or from the beginning.

Utilizing those data points and other information that can be extrapolated, the percentage above is obtained. I get that this can be controversial and creates both fear and angst. There is no helping that because this information is based on FACTS.

There is no cure for breast cancer, at any stage. When men and women are told that their early stage breast cancer was cured, that they are cancer free, they are being sold a fiction that they want to believe.

Telling the truth often hurts, but that doesn’t change the reality. Remission is the word, not cure, not cancer free.

If we are told the truth, we can deal with it. If everyone was told the truth, then the ranks of ally’s we need would have to come out of the shadows and fight with us.