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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/

Sunshine Blogger Award

I am honored to have been nominated by a fellow blogger and a fellow attorney for the Sunshine Blogger Award, Jeff Neurman of Its In My Blood. I really enjoy participating in these challenges and getting to know other bloggers. Also, getting any kind of award is always appreciated and, what can I say, I was born competitive and law school only made that much worse.

What is the Sunshine Blogger Award?

The Sunshine Blogger Award is an award of recognition to bloggers from fellow bloggers. It is a way to recognize those who are creative, positive and inspiring — people who spread sunshine to the blogging community. 

What are the Rules?

To keep spreading the love, these are the rules of the Sunshine Blogger Award:

  • Thank the person who nominated you, and provide a link back to their blogging sites.
  • Answer their questions.
  • Nominate up to 11 other bloggers and ask them 11 new questions.
  • Notify the nominees about their nomination via their blog or social media.
  • List the rules and display the Sunshine Blogger Award logo in your post.

Jeff’s Questions for the bloggers he nominated (and my answers thereto):

  1. What about blogging gives you the greatest satisfaction or joy? I write blog posts primarily because it is cathartic for me. I notice things or I’m working through something and writing it out helps me to connect better to my own feelings. I also write to leave a record of who I am, in my own words, for my boys. These primary goals are so inward focused that, frankly, it still surprises me sometimes that my words resonate with others. For now, the knowledge that I’ve been able to touch other people, put their feelings into words too, that’s what gives me joy.
  2. Conversely, what do you find most challenging or disappointing — if anything — about blogging? I write a lot. If I’m not journaling or writing letters for my children or advocating for something, then I’m blogging. My writing process is very much stream of consciousness and then I go back later to clean it up a little. The biggest struggle I’ve had is that I have lots to say and sometimes by the time a post comes up in the queue, it’s not as relevant. I’m still trying to figure out the right balance.
  3. Have you ever done any writing (school work doesn’t count) before starting your blog? I wrote a lot of short stories in high school for fun. I actually had a book writing club where we each wrote a chapter and then discussed it when I was in middle school. I wish I’d kept it. I’ve always been a letter writer, even now when it’s out of fashion. I wrote a lot in college and in law school. Out of law school, I wrote all day long, but it was so technical and careful. I enjoy writing about real things and I’d rather write to be persuasive than just for the sake of writing.
  4. What is your favorite vacation destination (which, if you are somewhat of a homebody can include a staycation)? Anywhere there is a beach. The beach is my happy place.
  5. Is there any food you absolutely cannot stand the sight of (pre-chemo, for those for whom that is applicable)? Why? Bananas and fried chicken. I enjoyed both before pregnancies and now I get nauseous if I smell either. There are also quite a few foods that I ate during chemo that now I can’t stand. My mom made me these wonderful green smoothies to keep my strength up and now I can’t see or smell them.
  6. Do you believe that it is wrong that a “season” of a television show (which you probably watch via Netflix or Amazon) is only 8 or 9 episodes and takes over a year to produce? Discuss. I hate waiting for the next season just as much as the next person, but I have to say that the anticipation (so long as it is met) is often half the fun. I often start at the beginning and binge watch all seasons of my favorite shows so I’m all caught up and ready for the next season.
  7. If you go to the movies, do you just suck it up and buy the larger size popcorn because it is not really that much more and seems like a better deal even though no human being needs that much popcorn? Defend your position. I love popcorn. Caramel corn, the buttery stuff, all of it. I would always get the largest one because there is always someone wanting to share! Plus, it’s better to have too much than not enough, especially where my boys are concerned.
  8. What was your least favorite subject in school? Math. My calculus teacher in high school would often let me take the tests twice because inevitably I would make addition errors or transpose numbers. I thought I was avoiding math by going to law school. Nope. It was literally the worst day on my first professional job, when I had to crunch numbers in front of a judge. I still have nightmares about that sometimes. I’m pretty sure I got them all wrong and had to fix it later.
  9. Do you think that there are too many lawyers in the world? (The answer I am looking for here, as a lawyer, is yes.). The short answer is yes. The longer answer is that I think law school should be more difficult to get into and we need to screen applicants better.
  10. Is it right that Pluto got downgraded from planet status? (This is a bit of a dated issue, but it still concerns me.). I still get turned around on why this changed, especially since I’m pretty sure it happened after I was already long out of school. Generally, I think despite the reasons for the recharacterization, Pluto should still be a planet.
  11. What is your favorite non-primary color? Purple!

My nominations for the Sunshine Blogger Award

When Jeff listed his nominees, he said some really amazing things about each person. Since it’s hard for me to tease out why I love each blog listed below, I’m just going to say this: when each person on this list publishes a blog, it’s like my birthday, I get to read more by and about each one. You, dear reader, should definitely check each one out.

  1. Life, love and the dirty c-word.
  2. Sharon Kehl Califano
  3. Outlivinglungcancer.com
  4. LifewithLane.net
  5. Kristie Konsoer
  6. Sandra Spivey
  7. Life on the cancer train
  8. Beyond the Pink Ribbon
  9. Connie Rosser Riddle

My questions for my Nominees

  1. What led you to start blogging?
  2. Who is/are your childhood hero(s)?
  3. Who are the people in your life with the most influence?
  4. If you could go back in time to meet one person, who would it be? Why?
  5. If you could live anywhere in the world, where would it be and why?
  1. What is your favorite book and why?
  2. What is the most memorable thing about you?
  3. Look at the most recent picture in your phone and tell us what it is and why you took the picture.
  4. Dogs or cats? Why?
  5. What was the most difficult conversation you’ve ever had and why?
  6. What one word sums up 2019 so far for you?

I can’t wait to read the responses and get to know each of the bloggers a bit better. Until then, Happy #MetsMonday!

My Fourth Week on Piqray and Faslodex

This week has been a doozy. Lots of things going on involving cancer and not involving cancer, losses and victories, sadness and celebration. This is becoming normal for us, although I can’t get used to the amount of my friends who are dying.

Anyway, here’s my list for this week …

  1. I’ve added back in some carbs after reading some suggestions and I frankly feel much better. Sugar has stayed pretty stable thus far.
  2. The nausea has remained rather consistent, which hasn’t been fun. It feels like being pregnant and I think my go-to anti-emetic, Kytril, since I’m allergic to Zofran, isn’t working well for this type of nausea. Definitely something to talk to my medical oncologist about.
  3. No rash, but my face is so dry. My sister has been helping me to find good moisturizers to use and I’m constantly slathering myself in cream.
  4. And another note, my poor nose is so dry that I’m getting regular nosebleeds too.
  5. A side effect of the nausea and diarrhea I’ve been experiencing is that I’ve lost some weight. Not that I really needed to loose any, but my clothes fit a bit differently and that isn’t a bad thing.
  6. There was some weirdness this week with the pharmacy at my cancer center. There were two scripts in the system and despite my doctor’s nurse practitioner discontinuing the lower dose and renewing the original higher dose, there was lots of confusion.
  7. I’m not very patient with confusion. It feels completely wrong that the medical professionals get things so mixed up and I have to keep checking up on things.
  8. Final loading dose of Faslodex is today, along with some bloodwork. Tumor markers haven’t changed much but they weren’t super high to begin with since we caught the progression early.
  9. Some of the women I know on Piqray are really struggling with getting it covered by insurance.
  10. Thankful for the good friends I’ve made who have helped me with connections to people in the right places.

This weekend is going to be super fun and I’m looking forward to focusing on loving on my boys, seeing some dinosaurs, and some special time with my sweetie.

Picture Day 2019

I love pictures.

Before children I didn’t take many pictures and now, I take thousands, sometimes daily. The amount of backing up and keeping those pictures safe is quite elaborate! Outside of the normal parental obsession with capturing all of the amazing moments of each of my boys, there is now also the added fear that my children will forget that I was here.

Morbid? Yes, probably. But that’s where I am right now. The recent progression, albeit mild, and the rocky adjustment to the new meds has brought up a lot of emotions that felt dealt with beforehand. Guess not.

PTSD? Definitely. I think all of us in the family experienced it in some form or another as the routine we’d gotten used to has been upended, yet again. I’ve never been more thankful that my boys are young and won’t remember most of this stuff or get anxious about the circumstances we find ourselves in as a family. They respond to the feelings in the air, most definitely, but they are able to release it and move on to something else, sometimes within seconds.

And then that, the very real acknowledgement that my boys are young and won’t remember parts of my life with them, plunges me again into dread and grieving.

How does one live while dying? Sometimes, when the side effucks are bad and I get into a dark space, I think it would be better for the end to come sooner. I see my precious boys every day and I wonder, would it be better for them to have no mama rather than a sick mama?

And then I get a sticky kiss or a sloppy hug or my littlest literally head butts me in his fervor to show me how much he loves me and I remember, being present with them is what they need. I can be present while lying in bed and we can do a lot there, talking, reading, cuddling. That’s a lot of presence that I can do even when I’m running to the bathroom every few minutes. And, let’s face it, they come with me there too.

I think back to when I worked a lot. How I made time for the boys. How we made the most of the time that I carved out for them. How I struggled with the fact that I wasn’t home with them, that I missed out on so much. Despite being raised in a home where my mom stayed home and my dad worked, I never thought I wanted to stay home. Yes, I struggled with harmonizing the amount of work I needed to do with responsibilities at home, but when Monday came and I headed to the office, I was grateful for the adult company and conversation. Breastfeeding and pumping was one of the ways that I assuaged the mommy guilt and I am confident that I gave them the best I could, most of the time. I read a quote from a poem by Kahlil Gibran recently. He said, ‘Work is love made visible.” I know that I did that, I made my love visible, tangible.

I think, as parents, the struggle and self doubt that comes along with wanting to do a good job is always present. There is always someone who looks like they are doing a better job, doing something different, doing more.

But we can’t ever know the whole story. No one has everything together all of the time, even if it looks like it from the outside.

Yesterday, I had the opportunity to help with school picture day at my kiddos’ elementary school. We had an amazing team of volunteers who handled the chaos of taking nearly 600 school pictures in about 2.5 hours. It was a marathon and I’m paying for that amount of activity today. I volunteer and help at the boys’ school mostly to be able to see them throughout the day, to get to know the teachers and to be a part of what they experience.

It was exactly what I needed.

9/11 a/k/a Patriots Day

There are a few events that define each generation and I think the events of 9/11 did just that for mine. I’ve not met anyone yet who wasn’t able to quickly answer the question … “where were you when the towers fell?”

On 9/11/2001, I was living in Virginia Beach, VA, and was in my third and final school year of law school at Regent University’s School of Law. One of the biggest things that defines that area were the 5 military bases in close proximity. I worked in a building called The World Trade Center, though it was far shorter than the towers in New York City in downtown Norfolk but lived and went to school in Virginia Beach.

We didn’t have a TV in our office and I’m pretty sure it was a family member who called someone in the office to alert us that something was happening. We looked up news sites online and saw the events begin to unfold. Soon thereafter, the office building was evacuated. We were all completely freaked out and there was a general sense of dread over the whole town. Not just for the loss of life, but also that a large percentage of the population was connected to the military. Whatever/whoever had brought the towers down, the men and women of our military knew that they would be affected directly. All the families knew it too.

After we were evacuated, it was hard to know what to do. I’m pretty sure I had a class at some point that day but I’m also pretty sure everything was cancelled. We had quite a few active military students in my class. I ended up at a bank, watching the surreal coverage and getting my bar application notarized. Hey, that’s just how my brain works — focusing on something concrete and real was helpful for me.

None of the phone calls were connecting to anyone near the city because everyone had flooded the airwaves. I remember that I was worried about my sister, who lived in the city then, but I don’t have a specific memory of when it was confirmed she was ok. Also, I am still a bit befuddled by the geography of the city and I honestly had and have no idea how far the towers were from where she lived/worked at the time.

9/11/11 ended without a lot of answers, with walls papered with the pictures of the missing and with the entire nation aghast and searching for something, anything to do.

The aftermath was like nothing I’ve ever experienced. The swell of patriotism and love of country was powerful. I also remember hearing about the hate crimes that were perpetrated against a variety of darker skinned people. I remember that everyone was flying an American flag and the urgency of the men and women in uniform that I knew who wanted to just DO something about the fact that we’d been attacked. I also remember that the incident was used to change a number of laws and policies, not always for the better. I’d also managed to forget that we didn’t have an Office of Homeland Security before 9/11.

To find out that we are not invincible, that we are a target, that we are susceptible to such danger was sobering. Did we learn our lesson? Did we absorb the knowledge that we must not assume that we are the center of the world? I’m not sure, to be frank.

I know the privilege that being born in the US affords me. I know it and I live it, every day. My children have that privilege as well. My husband is a naturalized citizen and there is no one who loves his adopted country more.

No individual, group or nation is perfect. The flaws of one group or person are not the flaws of another. Yet, despite the flaws, despite the challenges we all face, I am grateful to have been born and lived here, in the United States of America.

I hope you will all join me in a moment of silence to remember the people we lost that day, the heroism of so many first responders who leaped into danger without regard for themselves, and those people who still suffer the after effects of living through the events of 9/11.

We will not forget.

We MUST never forget.

PS: here’s a great minute by minute account of what happened when that day. I was astonished at how many details I’ve forgotten.

What’s different?

There’s always one or more discussions going on in #CancerLand about what might have or will cause cancer. For those of us with cancer, this discussion is fraught with pitfalls and angst. No one, after all, wants to be told that they did something to cause the worst thing that has ever happened. No one.

I’ve seen the reactions of those people who have felt shamed by someone else or reacting on behalf of those who have passed away because of cancer. No one wants to hear that you or a dearly departed friend should have done something else. No one.

I struggle with some of these assertions and the genuine desire of literally everyone to have something within their control. I get the angst, the anger, the outrage from fellow advocates. I also get the assertions of those who have to embrace the illusion of control to feel better.

No one knows what causes cancer. No one.

No one knows why some people die quickly and some are outliers. No one.

There’s nothing magical that anyone can do before or after a diagnosis of cancer that is assured of curing anyone.

Nothing.

I know that stopping my cancer is not really within my control, as I know so many other people have to face. In the face of the most out of control I’ve ever been, I’ve looked for things that I can control. I’m not entirely sure how much of this effort is conscious or otherwise. What I know is that the effort is there and having some things within my control really does make me feel better.

So, in no significant order, here are the things I’ve changed since I was diagnosed with Stage IV metastatic breast cancer:

  1. Doctors. I have an entire team of doctors I see regularly. I stay in touch with them and I actively work to ensure that they are all talking to each other and working together. Before cancer, I didn’t even have a PCP. My husband fussed at me a great deal about this before cancer. I’m a big believer in integrating traditional and complementary medicine, but the first step is to have a traditional practitioner in place.
  2. Stress. I’ve worked to reduce stress in many ways. The most visible way is that I’ve closed my law practice and accessed my disability benefits. We planned well, so it is possible for me to stay home with the boys and spend as much time with them as possible.
  3. Rest. I listen to my body more. If I’m not feeling well, I don’t push myself. I used to push myself all the time, every day. I’m much kinder to myself these days and I heed the assertion from my body that I need to rest.
  4. Food. We’d already done a lot to reduce toxins and preservatives during my pregnancies and nursing, but after my diagnosis and at the urging of my neurologist to help with my migraines, I’ve become a raw vegan. The goal is to reduce inflammation in my body while ensuring that I get the nutrients my body needs for fuel.
  5. Chiropractic/Naturopath care. I see my chiropractor twice per week. He suggests supplements and we work with my body to ensure that it is working the best it can. One element of this is we work to eliminate heavy metals and other toxins from my body to help it focus on the cancer and not other stuff.
  6. Yoga. I go to a chair yoga class three times per week, usually. I try very hard not to schedule things that would interfere with yoga and I don’t always succeed, but I definitely feel better when I’ve gone.
  7. Medical marijuana. Before cancer I’d never touched drugs. I literally tried to smoke a cigarette one time and I felt so awful that I never tried again. Medical marijuana keeps my pain at bay, helps me control my nausea, helps me keep my appetite and generally makes me feel calm.
  8. Supplements. I had dabbled in some supplements, tinctures, etc., at various points in my life, but nothing like now. I take a variety of plant based products for a variety of things, primarily to ensure that my body has all the nutrients it needs to function optimally while we get rid of the cancer and I deal with the side effects of the medication.
  9. Obesity. The only times I’ve been truly obese is when I was pregnant. Both times, I was over 200 pounds by the end. Since I’m 5’3″, that showed! A lot of it was water weight as I was super swollen both times. My weight has stabilized now that I passed the 2 year mark since chemo ended. I threw away any scales we had years and years ago. I don’t want to get obsessed about any numbers. I know that I feel good and I fit better into my clothes when I’m around a certain weight and I follow that. Unfortunately since I have doctors appointments all the time, I do actually know my weight as a number and that has definitely not made my life any better.
  10. Smoking/drinking. As I referenced above, I’ve only had that one puff on a cigarette in my life. My husband and I went to a few wine classes and we visited Napa Valley when we got engaged, so wine was definitely part of our lives generally. When we started trying to get pregnant (we went through a lot of fertility treatments), I stopped drinking any alcohol (coffee too, which was much worse). I was nursing right up until the time of my diagnosis, so I still wasn’t drinking. Now, I don’t usually drink because my liver has been working overtime since my diagnosis and I don’t want to make it work harder.

There are probably other things I’ve changed since my diagnosis that I can’t think of right now (thanks chemo brain!), but the one message that I want to impart is that none of the things I’ve changed has the ability to cure my cancer.

Let me say that again, none of the changes I’ve made (stress, food, etc) cause or can cure my or any cancer.

I believe in giving my body the tools it needs to fight off cancer and any other germ or toxin that I encounter. That’s just good stewardship of what God gave me. I like feeling stronger. I like having more energy. I don’t like the fatigue and pain and depression that comes with a terminal cancer diagnosis and I don’t think anyone else does either.

When anyone makes claims that cannot be backed up with real science, like certain foods kill cancer, it only reveals ignorance and infuriates those of us who know that it’s just not true. I don’t worry about the people who take it on themselves to do the research. It’s not hard to refute most of the silliness that is posted or even published. What I worry about are the newly diagnosed, the people who don’t do their research.

Bottom line, no one truly knows what causes cancer to proliferate out of control and no one has the cure for cancer. I wish that wasn’t the case and if something really worked, there wouldn’t be talk about it, we just wouldn’t have cancer any longer.

My third week on Piqray and Faslodex

Outside of a little storm we had this past week, things have smoothed out with the transition to the new meds. I’m super thankful that we didn’t sustain a direct hit by Dorian, but there are many other people who didn’t fare as well. We’ve been collecting a variety of aid items for the people in the Bahamas all week and if any of you, my readers, want to help, let me know.

Here’s my list of updates from this week’s experiences with the medication …

  1. The Metformin CR has kept my sugar under control quite well and the other side effects have become more manageable.
  2. Any time I succumb to my love of bread and carbs, I see a corresponding increase in my sugar. So, it seems the diet I need to utilize is one that cuts all carbs out.
  3. Fun fact, grapes have a LOT of carbs. Who knew?!
  4. I do have some extremely dry patches of skin, on my face of course.
  5. No rash from the Piqray, but I do get redness where the Faslodex injections are inserted.
  6. Having food in my stomach is a must when I take Piqray. The nausea is sooooo much better when I remember!
  7. Claritin is a much more tolerable anti-histamine than Zyrtec for me.
  8. Still not entirely sure how medical marijuana interacts with Piqray but I’m following the same protocols as when I was on Ibrance and that seems to be working.
  9. Children stuck indoors during a hurricane literally bounce off the walls.
  10. Friends are a necessity!

Happy Friday, everyone.

Bullying

  • bul·ly /ˈbo͝olē/ verb; gerund or present participle: bullying is to “seek to harm, intimidate, or coerce (someone perceived as vulnerable).
  • I’ve never been all that susceptible to bullying. There have been times that I felt bullied or pushed by various people in a variety of contexts; however, I wasn’t aware of it in the moment. The feelings in the aftermath were, as expected, a deep sense of betrayal and insecurity and rage.

    I think sometimes it is easy to utilize intimidation or coercion because it’s not easy to spot and those susceptible are unlikely to say something. I think sometimes people bully others because they were bullied and it worked. I think sometimes people who are desperate are more likely to bully because they will try anything. I think it is easier to bully on social media because there’s no eye contact, no person to see. I think women are bullies in a different way than men — a man or a boy would punch someone or otherwise interact physically; women, on the other hand are much more likely to be bullies in an emotional way, generally.

    I think there is a lot of bullying in the breast cancer community, particularly the metastatic community.

    And that sucks.

    I have a strong personality and when I get pushy, I know that it can be perceived as bullying. I don’t always see how my words or actions affect others. Because I am less susceptible to being bullied, I don’t always see the fact that others are different, that being pushy could be interpreted as bullying. I try to check myself and I’ve asked people around me to tell me if I’ve crossed the line.

    I give free reign to anyone reading this post to call me out if you think I have or am bullying someone!

    Also, I’m all for speaking truth to power and dismantling the patriarchy. I think speaking truth in a forceful or different way is not a bad thing. I think being passionate and calling out organizations who are doing something wrong is incumbent on all of us. I think speaking up about disparities, whether based on gender, race or something else, is required of good people.

    Yet, what I often see happening in the breast cancer community is that we react and shoot off a response or message quickly without thinking things through sufficiently. I also think that we’re often scared out of our minds, in pain, not able to sleep and that means our reactions are not always kind.

    When I was actively practicing law, my area of focus was family law. That meant I was at the heart of many divorces all day long every day. Those divorcing people needed to interact, especially if kiddos were involved, and I spent a lot of time coaching various people on how to interact given the fact that an email or text or voice mail or social media posts were likely to be entered into evidence.

    The advice I dispensed most often was this ….

    Picture someone you trust, you respect, you know can hurt you if they get mad. A boss maybe. A parent. A best friend. Once you have that person’s face or mannerisms or role fixed in your mind, then respond.

    Think about it, what do you do when you are communicating with someone you respect?

    • You give them the benefit of the doubt.
    • You assume the best.
    • You couch your words carefully to avoid causing offense.
    • You use professional language.
    • You check your grammar and punctuation.
    • You read the message more than once.

    This is what we all need to be doing. There is so much division within the breast cancer community. I feel it on a visceral level. I’m just as guilty as others in terms of not always reaching for consensus, for not looking for the common ground, for not giving the benefit of the doubt.

    Think what we could do together if we did.