Nancy’s Point 2019 Summer Blogging Challenge

I’ve never participated in a blog hop before and I look to Nancy Stordahl of Nancy’s Point as a bit of a trailblazer in the cancer blogging world. I read some of the responses to her blogging challenge last summer, but I didn’t really start blogging until this year. Blogging is, by definition, a mostly solitary endeavor, but I have to say that I’ve really enjoyed engaging with other bloggers, especially those of us who talk about breast cancer or other health challenges.I’ve had so many “ME TOO” moments and have used the musings of others as a spring board to talk about issues/ideas.

So, without further ado, here are my answers to the questions posed by Nancy on her challenge:

1.  Who are you? If applicable, share anything you want about your cancer (type, stage, when diagnosed, whatever.) Share something about yourself such as where you live, the name of your blog and it’s “mission” (no links here, though, or you might end up in spam), a challenge you have faced or are facing now, or whatever you want.

My name is Abigail Johnston (née Schroeder) and I’m a daughter, sister, wife and mother living with Stage IV metastatic breast cancer. I was diagnosed approximately two (2) years ago at the age of 38 and my life irrevocably changed. I’ve shared a great deal on my blog about my diagnosis and my efforts to adjust to the new challenges I and my family are facing on a daily basis. As I write and publish this blog post for the blog hop, I am gearing up for my newest PET scan, which will tell us for sure whether my cancer is behaving itself. I’m still on my first targeted therapy and am hoping and praying for a good long run. My husband puts up with so much and has supported me as we walk together through the worse experiences of our lives. My boys (now 6 and 4), don’t understand but often serve as the barometer for the emotional winds in our household.

2.  Have you ever participated in a blog hop before?

No! I’m a relatively new blogger (I started my blog in late 2018) so I’m still trying to figure all of this out! What has been super amazing about fellow bloggers is how supportive everyone has been. Even people who have a blog completely different from mine have followed and commented and engaged with me. I learn so much from other more experienced bloggers.

3.  What’s your favorite sort of blog post to write and/or read – personal story, informational, how to, controversial, political, opinion, rant or other?

I like reading posts that have a personal element/anecdote that also has a clear purpose or call to action. I do try to write this type of posts since I do think they are the most well received.

4.  Describe yourself in three words. Yes, just three!

Passionate Loyal Advocate

5.  Name three of your favorite books from your youth (whatever age that means to you.) that had an impact on you.

  1. A Wrinkle in Time by Madeline L’Engel
  2. Little Women by Louisa May Alcott
  3. Pilgrim’s Progress by John Bunyan

6.  What are you reading right now, or what’s on your to-read list for when you have time?

The Quantum Series by Douglas Phillips. I set a reading challenged in Goodreads for 2019 to read a book each day and I’m ahead of schedule! Most of the books I’ve read this week have been science fiction, which is a perfect escape when things get hard.

7.  What’s your favorite dessert of all time?

German Chocolate cake!

8.  Tell us about a special pet you have, had, or would like to have. (Never wanted a pet, that’s okay too.)

I love cats and have had one or two or three of them since law school. Maya is our current fur baby. She’s just turned 1 and is so much fun!

9.  What’s something people don’t know about you and might be surprised to learn?

I’ve pretty much been an open book on my blog and recently shared about the tattoos I’ve gotten since my cancer diagnosis to repurpose the areas of my body disfigured by scarring from my surgeries and procedures.

10.  Do you believe healthcare is a privilege or a right?

I am conflicted about this. On the one hand, I do think that the government has responsibility to care for its citizens. I believe it is often the lack of regulation/oversight and certainty in the marketplace that drives up the cost of healthcare. I believe the government has fallen down on its job here. I also think that people have some responsibility to stay healthy and to plan for health challenges. So, I guess my answer is “it depends” and “a hybrid”. I’ve also participated in the foster care system as it underwent privatization and while there were some bright spots, I believe the care of children in foster care took a major negative hit when for profit companies got involved. Overall, I think for profit companies have no place in health care.

11.  What’s your favorite thing about blogging and/or reading blogs?

Getting to know other people in their own words. For me, I blog as catharsis for dealing with the realities of terminal cancer and to leave a very clear record for my kids. That this endeavor has struck a nerve with others has been a bonus.

12.  What’s something you really suck at?

Holding space for others. My initial gut reaction is to jump into fix it mode. I’ve learned by experiencing this how difficult it can be when others jump into wanting to fix something or offering fixes. I’m trying to do better.

13.  What’s something you’re pretty good at?

I’m a good problem solver in a practical way. I know my legal background helps a great deal here and the fact that I’ve always been a but out of step with the “mainstream” in one way or another my whole life. I see things differently and I see different possibilities.

14.  How do you escape from cancer (or life in general) worries?

Reading. I love books that are very different from my life, like science fiction. I also enjoy reading thrillers (legal or otherwise) and I devour anything by Jodi Picoult and Diana Gabaldon just to name a few of my favorites. Check out my list of books on Goodreads!

Can’t wait to complete the blog hop and get to know other bloggers. Happy #MetsMonday!

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Pet Peeve Time

I suppose it would be true to say that my entire blog is really one long discussion about my pet peeves. It seems I have quite a lot of pet peeves! Well, today’s post is overtly about a major pet peeve of mine, maybe my number one pet peeve.

This post is not about any one person and is simply a cathartic release for me but if it gets you thinking, then I will consider it successful.

Most of you reading this post know that I’m a lawyer. I am proud to say that I graduated from Regent University’s School of Law in May of 2002, passed the Florida Bar in July of 2002 and was sworn in as a lawyer in the State of Florida on September 27, 2002. I’m still a lawyer. I carefully maintain my license and keep up with legal developments. I’ve had three (3) bar complaints over the years since 2002 but all were dismissed by the bar as unfounded. I’ve never had a malpractice suit filed against me. These are big things in the legal world and especially in family law, which had been my main area of focus for nearly 10 years.

My life’s work has been walking through the legal system with clients, advocating for them and protecting their interests. My specific role and the types of law/cases have taken many forms over the years, but I’m proud of the things I’ve been able to do with the help and support of my husband and my family. I built my own firm, hustled to get my own clients, made sure my employees were paid every month and made room for a family. I also made room for pro bono work and helping clients who couldn’t afford a lawyer and children who needed a voice. I served on boards and I worked hard to make my community better.

I did that, with a lot of help and support of my husband and family.

It was hard and it took hours and hours of my time.

I sacrificed many things to build my career and worked really really hard.

I worried about malpractice, dreamed about clients and trials.

I researched, sometimes feeling desperate that I was failing a client.

I say all of that to give you some context. I say all of that to give you a birds eye view into my background, what I’ve sacrificed to get to where I am.

So, when I meet someone new and I tell them I’m a lawyer and their response is to say that they were going to go to law school or were going to take the LSAT or did take the LSAT or started law school or whatever, it’s off putting and borders on offensive. I do understand that the person in front of me is likely trying to build rapport, to find some common ground. I try to keep this in mind when I respond.

HOWEVER

Getting into law school is hard. Getting through law school is hard. Passing the bar on the first try is hard. Being a lawyer, every day, is hard.

I did that. I put in the time, the blood, sweat and tears to build and maintain a practice, to stay away from malpractice, to ensure that my clients’ needs were addressed. I’m not claiming to be perfect or that I was always successful. I wasn’t always successful. What I know that I did do, is give everything of myself to ensure success. I cared oh so much about each case, each client, each document, each issue.

When someone blithely and ignorantly reduces all of that work and time and effort to something anyone could do or at least the person in front of me could do, it’s difficult. I try very hard to smile and nod and not react. I really do.

Sometimes I can’t. Sometimes it’s just not a good day.

You see, I had to walk away from all of that. Everything I built. Everything that I had worked so very hard to achieve.

Don’t get me wrong, my kids and my family are so much important than my law practice. When I knew I would have so much less time than I thought, that I have a terminal illness, it was the obvious, logical choice to walk towards a different life, to make the very most of the shortened time I have.

But it was HARD.

Don’t mistake what I’m saying, I have no regrets.

I know in my bones that I made the right choice; it wasn’t, however, a choice that I made lightly.

It’s just that when a person who didn’t make the decision and commitment to become a lawyer and maintain a license to practice law blithely says that they could, it not only belittles the actual effort that I actually made to accomplish that, it also reminds me that I walked away from that.

This is my reminder to think before you speak.

Survivor’s Guilt

Survivor guilt (or survivor’s guilt; also called survivor syndrome or survivor’s syndrome) is a mental condition that occurs when a person believes they have done something wrong by surviving a traumatic event when others did not, often feeling self-guilt. The experience and manifestation of survivor’s guilt will depend on an individual’s psychological profile. When the Diagnostic and Statistical Manual of Mental Disorders IV(DSM-IV) was published, survivor guilt was removed as a recognized specific diagnosis, and redefined as a significant symptom of post-traumatic stress disorder (PTSD). It may be found among survivors of combat, epidemics, murder, natural disasters, rape, terrorismamong the friends and family of those who have died by suicide, and in non-mortal situations.”

This is such a real thing amongst breast cancer patients and I confess that I had no real concept of how this works until the first person with Stage IV metastatic breast cancer I was close with died. I didn’t have much of a frame of reference for how I would feel about Kari dying.

That was her name, Kari. Kari Roush.

I read once that when a person dies, there are three deaths: 1) when their physical body fails; 2) when the physical body is buried; and 3) when their name is forgotten. Kari has passed the first two deaths. As far as it depends on me, her memory will not be forgotten.

When I heard Kari died, it wasn’t a surprise. She’d been failing for weeks and she was home and cared for by her family and hospice. She was comfortable (as comfortable as possible) and she was ready to leave the suffering of her human body and go to be with Jesus in heaven.

She was ready, but I wasn’t.

Kari’s death hit me like a ton of bricks and I’d never met her in real life. We’d never even talked on the phone. We were literally strangers to each other except for the late night messages and discussions we had regularly. It felt weird that I was floored and felt so awful. It felt almost wrong, like I didn’t have a right to be grieving when I had such a small part of her.

Turns out, I was also dealing with survivors guilt in a big way. You see, Kari and I had nearly an identical diagnosis, hormone positive, her2- breast cancer that had metastasized to our bones only. We were even on the same medication. Yet, I was stable and she started having progression. Once the cancer left her bones, there wasn’t much time.

Others I know have lived for years with their cancer in various organs.

Others I know have bone only Mets that stay put for decades. Kari didn’t. Kari’s cancer started growing out of control.

Why?

Only God knows.

How am I different or any other patient? Again, only God knows.

What I know is that I felt for the first time in my life, when Kari died, that there was no reason it should have been her and not me.

None.

And that sucked, big time. It still does.

I see friends around me dealing with progression, brain lesions, new organ involvement, lesions that are growing and lighting up. I see friends around me who are stable, some for decades. There are those who are diagnosed and die very quickly. There are those who linger, just hanging on. There are those who are living lives of meaning, working, being productive. There are those who can’t.

Nothing can predict reliably who will be an outlier and who will succumb quickly. And that sucks, really sucks. It sucks for the people who get so sick and their families and it also sucks for those of us left behind.

It seems to me that there is still some amount of stigma for those of us who struggle with survivors guilt. Somehow it seems to me that there is an expectation that we’d be able to move on, to shrug off the sadness and often paralysis when a person has died. I don’t know why and I don’t have answers, I just know that survivor’s guilt is a real thing and it is truly awful.

If you are dealing with the death of someone or even just struggling with sharing good news when people around you are struggling, it’s normal. To have survivors guilt or to struggle with feelings that others who are not metastatic don’t understand, is real, it’s natural and it’s normal.

There is help available. Reach out, ask for help, work through your feelings. Stuffing feelings of guilt, ptsd, etc only hurts you. No one else.

Ask for help.

We need Help!

Right now there’s a bill before Congress called the Metastatic Breast Cancer Access to Care Act (H.R. 2178). It’s the second time it’s been introduced, sponsored this time by Republican Peter King (NY-2) and Democrat Kathy Castor (Fl-14). A companion bill has also been introduced in the Senate by senators Martha McSally (R-AZ) and Chris Murphy (D-CT) as S. 1374. If passed, it would waive the five-month waiting period for Social Security Disability Insurance and the 24-month waiting period for Medicare coverage.

With a median survival rate of three years, most metastatic breast cancer patients won’t live long enough to receive Medicare under the current regs. That means they die in debt which they leave to their grieving family members or for the taxpayers at large to pay through charity care reimbursements hospitals receive from the government.

A study last year by the American Society of Clinical Oncologists found that 25% of cancer patients also suffer from financial toxicity, meaning they don’t have the money to pay for medical care or household expenses due to their disease. The result: they forego medication, tests and doctors appointments, leading to painful and tormenting premature deaths.

“The current safety net system is more tailored to the needs of individuals with chronic and long-term illness that undermines their ability to work, and does not meet the needs of individuals facing catastrophic events and complex ongoing care,” said Michael Kovarik at METAvivor.

METAvivor is asking people to write to their legislators, asking them to co-sponsor the bills to raise the ante this time that the legislation will pass. So far, it has 101 sponsors in the House.

I encourage anyone in the United States reading this to go to http://www.congress.gov and type the bill numbers (H.R. 2178 and S 1374) into the search bar. Click on the bill, then scroll over to the tab that reads “co-sponsor” and click there to find out if your legislator is a co-sponsor. If you don’t have your rep’s contact info, you can go to http://www.house.gov or http://www.senate.gov, type in your zip code and their information will pop up.

METAvivor has made it easy for us by providing this script:

 I write today as a constituent and as an advocate for the metastatic cancer community to ask that your office please cosponsor the bipartisan Metastatic Breast Cancer Access to Care Act (H.R. 2178 f or S 1372). This common sense legislation would fast track disability and healthcare benefits (the current waiting periods are a major challenge for many affected individuals and families). 

If you’re writing to your congressman or woman, add: To cosponsor H.R. 2178, please reach out to Deena Tauster in Cong. Peter King’s office at deena.tauster@mail.house.gov or 5-7896 or Elizabeth Brown in Cong. Kathy Castor’s office at elizabeth.brown@mail.house.gov or 5-3376 

If writing to your senator, add: To cosponsor S. 1374, please reach out to Emily Crow in Sen. Martha McSally’s office at Emily_Crow@mcsally.senate.gov or 4-2235 or Elizabeth Darnell in Sen. Chris Murphy’s office at Elizabeth_Darnall@murphy.senate.gov or 4-4041.

Those of us in the metastatic breast cancer community are aware that there are many others living with metastatic cancer. While this current law only applies to those of us with metastatic breast cancer, it is the first step towards expanding these same benefits to include all metastatic cancer.

Mystery Blogging Award

I have been nominated for another award! It’s still a bit of a shock when people I know comment, but it’s a whole other thing when fellow bloggers engage. Jordyn from https://thechronicallyunimaginable.blog/ is one of those fellow bloggers, she not only follows me and comments on my posts, she has nominated me for this award and I’m so honored. You should definitely follow Jordyn, she has great content and I’ve learned a lot by reading her posts.

So, how about we get into the rules of this award?

The Rules:

  • Put the award logo/image on your blog.
  • List the rules.
  • Thank whoever nominated you and provide a link to their blog.
  • Mention the creator of the award and provide a link as well.
  • Tell your readers 3 things about yourself.
  • Nominate 10 – 20 bloggers.
  • Notify your nominees by commenting on their blog.
  • Ask your nominees any 5 questions of your choice; with one weird or funny question (specify).
  • Share a link to your best post(s).

What is “The Mystery Blogger Award”? According to the award’s creator, Okoto Enigma, the ““Mystery Blogger Award” is an award for amazing bloggers with ingenious posts. Their blog not only captivates; it inspires and motivates. They are one of the best out there, and they deserve every recognition they get. This award is also for bloggers who find fun and inspiration in blogging; and they do it with so much love and passion.” You can check out her blog here.

My Facts:

1.  I love the water, bath, pool, ocean, whatever. Being on, in or near water is my happy place.

2. I hated wearing heels and nice clothes while I was working. I’m super happy as a clam in my yoga clothes and not wearing makeup! If only I could get my hair to behave itself in the humidity …

3. I was born in 1978, which is a weird no mans land of generations. I really have much more in common with Generation X than any others. My kiddos, on the other hand, are growing up with technology literally everywhere and they interact with machines in a very very different way.

My Favorite Posts: The first blog post that seemed to resonate with the breast cancer community was my post exploring and highlighting the differences between early stages and metastatic patients: https://nohalfmeasures.blog/2019/01/02/early-stagers-vs-metastatic-patients/. My own experiences lost their sting when I was able to write about it and so many people wrote to me about how my words made a difference. The second post that rates a mention in my mind is the one where I explore the labels that either resonate or don’t: https://nohalfmeasures.blog/2019/02/04/what-do-i-want-to-be-called/.

My Nominations: (in no particular order)

  1. Fractured Faith Blog
  2. https://thechronicallyunimaginable.blog/
  3. The Reluctant Spoonie
  4. http://melanomajo.com
  5. http://faithoverfearheal.com
  6. https://catsncancer.com
  7. https://emilyrgarnett.com
  8. https://warriormegsie.com
  9. https://journeyingbeyondbreastcancer.com
  10. http://nancyspoint.com

My Questions For You:

  1. Why did you decide to start blogging?

When I was diagnosed with Stage IV metastatic breast cancer, my sister in law suggested that I update family and friends via a Caring Bridge site. That was sufficient for me for a while and it was helpful to provide medical updates that way so that the people who needed the information got it without me having to share the same information multiple times. However, once I finished my “active treatment” period, I wanted to do something more. Instead of just sharing my health updates, I wanted to use my voice to make a difference. And so, No Half Measures was born.

2. Have you ever been ticketed (or arrested) for anything before?

I’ve never been arrested, but I have received speeding tickets, quite a few of them. In my defense, I’ve only gotten a ticket about half of the times I’ve been pulled over for speeding. One of the most awkward newlywed discussions Elliot and I have had was when we visited the insurance agent to combine our insurance policies. He had the best rating possible and the fewest infractions. I was the opposite, in danger of being kicked off because of my tickets. I’ve not received a ticket in some time but I can’t say I’ve slowed down very much, it’s just that minivans are pulled over less often than hardtop convertibles.

3. In 5 words or less, describe your greatest strength.

In a word, being stubborn. Synonyms that equally apply are grit, fortitude, or tenacity. Once I’ve chosen a path, there is very little that can dissuade me.

4. Would you put pineapple on pizza?

Definitely! I particularly love Hawaiian pizza and there is very little that pineapple does not improve.

  • 5. What is the strangest thing you did as a child?
  • Before my parents understood that I enjoyed being by myself and enjoyed reading, they would punish me by sending me to my room. Once they realized that I actually enjoyed “timeouts,” they had to think of something more effective.
  • Thank you so much for reading today’s post! What did you think of my answers? Did you learn anything new about me? Please subscribe and I’ll see you next time!


     My questions for those I’ve nominated:

    1. What is your favorite childhood memory?
    2. What animal represents the attributes you are most proud of?
    3. What is your primary goal for 2019?
    4. What do you want to accomplish with your blog?
    5. Who is your favorite superhero?

    Can’t wait to read the answers! Love and light to each of you.

    Tattoos

    Here’s a secret about me that I hadn’t shared publicly until recently — I’m fascinated by tattoos. I’ve always wanted to get tattoos. Seriously.

    But

    I was born into a really conservative family and then I chose a really conservative profession. I decided to live in an area that attracts more conservative people than not and I chose conservative places to spend time. Let me just say that I don’t just mean politically conservative in all of these examples but that’s in there too.

    Not the most accepting arenas for tattoos.

    As a young woman, I also saw several young women who had tattoos get pregnant and saw their once beautiful ink become distorted as their skin stretched and changed and then shrunk again.

    I didn’t give in to my desire to decorate my skin for decades. 4 of them in fact.

    Then, I discovered that I had Stage IV metastatic breast cancer and so many of the rules and boundaries I lived my life by suddenly didn’t seem as important. Suddenly, my body was doing things and I was dealing with things so far outside my comfort zone. Suddenly, nothing looked the same, least of all my body.

    As I write this post in mid-2019, I’ve had a modified lumpectomy to remove the tumor in my left breast that left me with a disfiguring divot in the middle of my chest, a port inserted into my chest that sticks out in a place easily noticeable right underneath my right clavicle, leg surgery to insert rods inside each femur which left me with 10 scars, 5 on each leg, along with a hysterectomy and oophorectomy to remove all of my reproductive organs and left me with scars on my abdomen and an immersion into surgical menopause. The medication I take on a daily basis further impacts my body, thinning my hair, changing my skin and nails.

    Most of these changes are on the outside, the inside is even more complicated.

    When I began to think about how I was dealing with these changes and how I could use tools available to me to affect positively the changes I’m dealing with, I thought again about getting tattoos. Yes, plural. Remember, I do nothing halfway.

    First, I got a beautiful frayed ribbon all in black patterned off of the logo for METup, which highlights how the pink movement and sexualization of breast cancer has failed those of us with Stage IV metastatic breast cancer. I had this tattooed right over that disfiguring divot in my left breast. This was the first tattoo I’d ever gotten and it gave me the courage to keep going. I chose a tattoo artist who doesn’t work with color so that the ribbon is stark and sticks out.

    Next, I have a dragon that curves around my right hip down to my right knee. It hides the scars from inserting those rods into my femur. I chose an ice blue Chinese dragon because, to me, dragons are creatures demonstrating strength, grace and resilience. I am not Chinese nor am I a big believer in astrology; at the same time, the blue dragon is said to control the movement of the star Alpha Virginis in Virgo, Sagittarius and Libra. I’m a Sagittarius, barely. Blue dragons are also said to symbolize spring, generosity, independence, free mindedness, and creativity. Blue dragons are also related to water. From my experiences with acupuncture, I know that water is related to bones, which is where my cancer decided to reside. I’m also right handed, so having the dragon on my dominant side is also significant.

    The dragon on my right leg is holding a hoju, which is a classic image in traditional Japanese art and myth. Believed to be a wish fulfilling jewel and a bringer of good health, the hoju is often depicted as an orb with a pointed top and is occasionally surrounded by flames. The hoju likewise has strong ties to Buddhism and three hoju together are said to represent the three jewels of Buddhism; Buddha, Dharma and Sangha. 

    Finally, I have a flowering vine that obscures the scars on my left leg, twins to the scarring on my right leg. While my right leg had the most cancer, it has recovered differently from my left leg. I’ve had the most pain and discomfort and ongoing symptoms in my left leg despite the fact that the objective symptoms are nearly identical on the scans. I chose four flowers to represent December, my birth month, June, my husbands birth month, and March and May, which represent the birth months of my boys. Through this process I learned that December and March have flowers from the same family, while June is the rose (one of my favorite flowers) and May is a small unique flowering vine that just completes my bouquet. Very symbolic representations of my boys.

    I’m very much enjoying my new ink and am a little mystified by all the looks I’ve received. My boys are fascinated and I love that some of the things I’ve experienced now have the meaning I’ve found. Next up, matching tattoos with my sweetie. Just still trying to figure out what. If you have a suggestion, feel free to drop me a note!

    Day of Caring, 2019

    I attended the Day of Caring for Breast Cancer Awareness, South Florida in 2018 for the second time. The first time I attended was over a decade ago when my mother was a model of hope. May of 2019 was the third time I attended and this year, I was honored to participate as a model of hope in the final part of the event, the fashion show. Per the rules, this experience is a one time offering although I do wish my mom and I could have done it together.

    Hope is a funny thing sometimes. I think the purpose of including “models of hope” is to not only give survivors a fun day focused on them and celebrating the fact that we’re all still alive but also to show others that it is possible to participate as a model and look beautiful even while recovering from a diagnosis of breast cancer and all the treatments we undergo. We got our makeup and hair done by professionals and we were treated to outfits designed just for us by some truly amazing women who gave selflessly of their time and talents.

    At the end of the day, it’s still hard for me to participate in events geared towards survivors. And by survivors, I mean people diagnosed with early stage breast cancer. I know that when my mom was a model, it was incredibly empowering for her to participate, to punctuate the end of her treatment. Yet, I will never be able to do that because I will never be done with treatment. I look at these experiences so differently now that I’m living with a terminal diagnosis.

    I am thankful for the opportunity to bring awareness to the experiences of women living with and beyond the diagnosis of breast cancer. I’m grateful to have met some amazing women who also participated as models and the women who ran the event. Just about all of the women who planned and put on the event had modeled at some point after their treatment ended. This speaks to the incredible camaraderie developed from working on a common goal, that of raising awareness about breast cancer and celebrating those who live with it.

    The Day of Caring is a worthy endeavor for early stage survivors and is a great learning opportunity for both patients and medical professionals. I didn’t get to attend the seminars this year because the morning was wholly taken up with makeup and hair ministrations, but I learned a lot last year!

    Unspoken Ink

    Many people reading this blog post will know that I have a Bachelors degree in English with a Literature concentration. That basically meant that once I got the general education classes out of the way, I spent three (3) years in college reading a variety of literature, then analyzing and discussing the meaning, themes, or lack thereof. Once I graduated from UCF and went to law school, those same skills came in quite handy, but for a completely different reason. No longer was I focused on uncovering the symbolism in the word usage or discussion the themes of a variety of works, I was focused on the issue, rule, analysis and conclusion (IRAC) and trying to survive the Socratic method when sometimes I had literally no idea what was going on. At least I’d mastered the art of sounding like I knew what was going on in my literature classes, it was much harder to fake it in law school. Plus, all of a sudden I wasn’t the most intellectual, the fastest to make connections. Suddenly, my classes and the assigned reading was hard and took all of my focus and effort.

    I left the art of reading behind when I went to law school and then left it even farther behind when I started working. Yes, I still read for fun, but I mostly focused on light reading to escape from the seriousness of dealing with legal cases or read books that would help me develop some necessary skill, leadership or otherwise.

    I re-embraced my rusty creative writing skills once I was diagnosed with Stage IV metastatic breast cancer and started my blog.

    Writing was fun again.

    Instead of using my ability to put words together to accomplish some goal, I could write with no apparent goal. I could write for the sake of writing. Deadlines were no longer looming and time was available. My energy level is nowhere near what it was before obtaining a terminal diagnosis and the side effects that come from the medical interventions and necessary medications; yet, now there is space for me, space for me to write.

    Writing has always been how I work out my feelings. When they stay locked up in my head or wherever feelings are, they are intruders, inexplicable and unknowable. When I can lay them out in black and white, with maybe a handy metaphor to make some sense of them, I can understand them. I think I’ve always been this way. I can focus on the here and now, but feelings often make me uncomfortable to the point of wanting to run away.

    Writing keeps order.

    The rules of spelling and grammar and structure give me a framework.

    Without this structure, I feel awash, drowning in emotion, most of it dark and unwieldy. There just aren’t enough words or images that convey the reality of living with a terminal diagnosis, to seeing what was slip away, to watching everything I’ve known and relied upon changed irrevocably.

    So I began to write. I began to give some structure to what I was feeling and seeing and experiencing. And it helped.

    But I was still missing something.

    Blogging is truly a solitary endeavor. I write my posts. I publish them. I add a picture or two and then I go on with my day, with my doctors appointments and the inevitable tasks that come with being a mom and a wife. Sometimes people comment. Sometimes it seems that a lot of people are reading a particular post. Sometimes I get feedback. Most of that is secondary to the catharsis of writing, of creating word images that reflect the moras in my mind.

    And then I heard about the Unspoken Ink writing workshop with Lacuna Loft from my dear friend, Meg Chase.

    And the sky opened up.

    The act of writing and discussing and providing feedback and reflection with other women experiencing something so similar to me has been what I didn’t know I was looking for. Despite the vulnerability of sharing intimate thoughts while we all look at one another through the computer screen via Zoom, it is both a safe and an exposing experience. There are tears, laughter, kindness and yet a fearlessness that is necessary to particular.

    I highly recommend this workshop. It is life changing, life affirming, awe inspiring, and oh so necessary.

    The workshop is designed for early stage survivors and for younger women; however, despite the fact that I’m stage IV, I am getting a lot out of it. Despite the fact that it would seem that my perspective is darker, more grim, many of the women in the class are dealing with very similar issues as I do. Also, we have a few women who are older than I and that different perspective brings a different level of insight as well.

    Bottom line, we are better together and when we are vulnerable together, it builds community, it builds our connection to others and it leaves us feeling less isolated.

    Check out Lacuna Loft’s offerings and maybe I’ll see you during the next workshop series!

    Book Review: The Cure for Sorrow

    I recently discovered Jan Richardson and her blessings resonate with so many things, but this book especially has touched me in the midst of the treatment I’m enduring for stage IV metastatic breast cancer. She wrote this particular book in the middle of and as she lived her life in the aftermath of her husband’s sudden death. While she is working through her own grief at the death of her soulmate, the specifics of the grieving process are nearly universal.

    From the introduction, the author describes grief in this way:

    “Grief is the least linear thing I know. Hardly a tidy progression of stages, grief tends to be unruly. It works with the most raw and elemental forces in us, which makes it unpredictable and wild. Grief resists our attempts to force it along a prescribed path. It propels us in directions we had not planned to go. It causes what we treated as solid to give way. It opens new seams of mourning in places we thought settled. It spirals us back through layers of sorrow we thought we had dealt with.”

    These words reveal to me that the author gets it, she endures grief, and that speaks to me in a deep and compelling way. I haven’t lost my husband, as she did, but I am grieving a great many things in light of my terminal diagnosis and the language of grief is the same no matter what is being grieved.

    One of the blessings that resonated the most with me is this one:

    BLESSING FOR THR BROKENHEARTED

    Let us agree

    For now

    That we will not say

    The breaking

    Makes us stronger

    Or that it is better

    To have this pain

    Than to have done

    Without this love

    Let us promise

    We will not

    Tell ourselves

    Time will heal

    The wound,

    When every day

    Our waking

    Opens it anew

    Perhaps for now

    It can simply be enough

    To simply marvel

    At the mystery

    Of how a heart

    So broken

    Can go on beating

    As if it were made

    For precisely this–

    As if it knows

    The only cure for love

    Is more of it,

    As if it sees

    The heart’s sole remedy

    For breaking

    Is to love still

    As if it trusts

    That its own

    Persistent pulse

    Is the rhythm

    Of a blessing

    We cannot

    Begin to fashion

    But will save us

    Nonetheless

    Grief is human. Grief is real. Grief is weighty. Grief changes us.

    Everyone is different

    I see it all the time and, at times, have done it myself, belittling and/or comparing the struggles of others. Especially when the struggles of others are specific to struggles you yourself have overcome. It is so easy to look back and gloss over the detailed bits, to forget the triggers, to urge too hard that people overlook things that weren’t so hard, in hindsight. And yet, true empathy is to work to put ourselves in the other person’s shoes as they are now, not as they could be.

    Let me give an example.

    I’ve never been too hung up on appearance. Comfort has always been a big deal for me and that usually trumped appearance, for me. It was after pregnancies that I finally, truly, embraced the body that I have, not the body I wanted. I kept fit by being active, to a certain extent, and threw away the scale.

    When I learned that I would need chemo, I went out a bought a wig. The wig was astonishingly like my own hair and frankly if I wore it, people who knew me were hard pressed to know that’s what I was wearing. But I only wore it once.

    We’re in Florida, you see, and the fact that the wig was hot was a bigger deal to me than revealing my bald head.

    That’s me.

    I’m pretty much comfortable with me and I don’t care much if I made people uncomfortable. I had quite a few kiddos ask to rub my head and lots of staring by adults. I just stared them down, just like I would make contact and stare people down who were uncomfortable with me nursing or pumping in public.

    I get that not everyone is like me.

    I get that for some people, seeing themselves in the mirror looking different can cause a ptsd reaction. I have ptsd about other things. Sounds, smells, pink ribbons. These things cause so much angst and upset that wouldn’t be readily apparent to others.

    I know that many other people have experiences that they struggle to explain. I don’t usually spend any time attempting to explain or justify myself. I will often make a statement as to why something affects me differently and then move on.

    However

    I’ve recently learned that a dear friend of mine, while working through her own ptsd about how her hair looks so very different, was told (In different actual words) to suck it up by other women in a support group we’re both in. That, in different words, her hair was such a small thing in the broad scheme of things and she should not be so focused on the differences foisted upon her by chemo.

    Different people grieve different things.

    For those of us who are stage IV, some things aren’t as big of a deal. Learning that one’s life expectancy is significantly shortened does put a different context on literally everything.

    But not everyone processes things the same way.

    If I’d had early stage breast cancer, I may have been more focused on how my bald head made me feel or really short hair made my eyes look different or how my body didn’t feel the same. I experience these feelings on some level, it’s just that they don’t compare discernibly to being terminal.

    That’s not everyone’s experience.

    I don’t experience being told I can’t have more children than in the same way as someone who has never had children. I don’t experience issues with dating or when to tell someone about my diagnosis because my husband already knows literally everything.

    You see? We’re all experiencing different parts of the elephant called a breast cancer diagnosis. We each have our own, unique context. Some of it will be the same, some different.

    When we think we can tell someone else how to feel, how to manage the psychological aftermath of treatment, how to recover, we have stepped out of where we should be.

    Tough love has its place and sometimes some people need a bigger prod to get out of a rut. I don’t think anyone has the ability to intervene unless they are family or super super close friends, who know the entire context.

    Period.

    Support groups are just that, there for support.

    Let’s focus on that, supporting others, and leave the instructions or input to those who ask for it.