Finding your TRIBE

We’ve all heard the saying “it takes a village” when applied to child-rearing.  I would submit that this same idea applies to life and, particularly, dealing with a terminal illness.  Now, as an introvert, I subscribe to the onion theory of relationships, i.e., the closer anyone gets in a relationship to me, the smaller the circle.  When I was diagnosed, I had that onion pretty well established, but I realized very quickly that I needed to create a new category.  Reaching out for support to strangers creates a great deal of anxiety internally for me, so that was not easy.

One thing I’ve learned over and over in the two years I’ve been living with Stage IV metastatic breast cancer is that having a group of supportive metastatic men and women to turn to is not just a helpful thing, it’s a necessity.  When I encountered issues with women diagnosed with early stage breast cancer, it was the ladies in my metastatic group that helped me sort through how I was feeling.  When I run into barriers to seeking medical care or when I’m researching something new or novel, I turn to those metastatic patient advocates that I know and trust.

Finding a supportive group of people hasn’t always been easy.   I’m online a lot now and I’ve found that online support groups fit the best into my schedule.  Having two little boys means that traditional support groups that meet in the evening just doesn’t work for me right now.  Plus going to a meeting to talk about such personal stuff gives me the willies.  I can write posts online or lurk in a group until I figure out the lay of the land; that fits my personality better.

Yet, there are so many online groups and not all of them are productive for everyone.  For instance, I’m a person of faith, but since that’s always been more of a private part of my life, it is a turn off for me when there are people who are posting lengthy religious comments.  Personal quirk of mine.  Another example is that I integrate both Western and Eastern medicine in my care.  I’m pretty open to try a lot of things, but I pull what makes sense for me from both camps.  It seems that most people are in one camp or the other and feel that their way is right.  I get that, but I still have to do what makes sense for me.  There is no one size fits all with cancer treatment or the cancer experience, yet some people want to make it so.  It’s just not.

With all of my quirks and what makes me me, it hasn’t always been easy to find my place and sometimes that place changes, but I think I’ve started to find my tribe, to find the group of men and women who are supportive and get me.   What I really do know for sure is that everyone needs that village, everyone needs that tribe.  Doing life with a terminal illness is not for the faint of heart and we all need support.

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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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.

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.

Anger and Depression

I was listening to a piece on NPR a few months ago about how Anger and Depression go together.  I’ve heard that a definition of depression is anger turned inward, so this link is not surprising to me.  As an introvert, I’m pretty familiar with the inward turning concept, that’s my normal modus operandi and I’ve a bit of a temper, so anger is not an unfamiliar concept, depression, though, that’s a new one.

I’m aware that there is still a stigma around mental illness, that anyone who relies on medication to manage their pain, mental or otherwise, is viewed differently.  I’ve also heard that cancer patients don’t often tell their medical providers how they are feeling, during or even after treatment.  There is huge pressure to be “fine,” to leave the experience of cancer behind once the active treatment is done.  That leaves so many men and women in a dark place without hope.

Fuck that.

Yep, I just used the “f” word.

I don’t curse often, but this is a subject that I feel rather strongly about.

I’ve been diagnosed with depression and anxiety and I’m taking medication for that since early on in my diagnosis, which occurred in mid-2017.  My normal coping mechanisms weren’t up to the task when I received a TERMINAL diagnosis and I still need help to manage my emotions.  I need help to get out of bed in the morning and I need help to deal with the bone deep anger I feel.  I need help to be able to be present for my children rather than wallowing in a deeply dark place.

My terminal illness is invisible at the moment, at least when I’m wearing regular clothes.  You can see about half of my scars when I wear a bathing suit.  The scars on my legs show where I was cut to accommodate the rods inside my femurs and the screws to hold said rods in place as well as some of the tattooed dots from radiation.  My bathing suits usually hide the scars on my belly from the robot assisted hysterectomy, the oncoplasty reduction where the cancer was removed from my breast, the rest of the tattooed dots from radiation and the two C-section scars.  These scars tell the story of some of the physical affects of my treatment, but they don’t tell the story of the mental and emotional affects.

It’s hard to put into words how difficult a terminal illness is on the psyche.  It’s hard to put into words the ambiguity of continuing to live life and deal with the minutiae of “real life” while dealing with constant pain and scans and the threat of progression and death at any moment.  It’s hard to put into words the affect of watching friends die every day.  It’s hard to put into words how dealing with medical professionals and my insurance company and all the stupidity of the medical system can be infuriatingly complicated.

I can handle most of this most days by compartmentalizing the hard stuff and focusing on what is in front of me.  I also take a good amount of medical marijuana.  Before anyone freaks out that I’m high while driving or taking care of my children, relax.  I am responsible about this.  I take CBD during the day and use THC at night to pleasantly float to sleep.

There are days when I can’t deal.  Literally, can’t.

I don’t feel shame at admitting that I need help, chemical and otherwise.  Seriously, no one is naturally equipped to deal with finding out that death is a heck of a lot closer than one originally thought.

I’ve become accustomed during my life to pushing the bad stuff to the back of my mind and making myself move forward, one step at a time.  I’m actually better at this than I thought; however, being diagnosed with a terminal illness has been a different experience for me.  I’ve had to learn new coping mechanisms and I’ve had to learn to give myself space.

I’m not good at self-care.

I’ve gotten better, but I’m still not very good at it.

Here is my list of the things I’ve utilized to help cope with living while I’m dying, in no particular order:

  1. Yoga.  The combination of physical exertion and the focus on mindfulness, breath, and being present has so many physical and mental health benefits.  If I don’t go to yoga regularly now, I really feel it.
  2. Sleep.  Sleep has really always been a core value of mine, but as a mother and a business owner, sleep started to take a back seat at times.  Now, I consider sleep as part of my medication regimen, it’s an integral part of my self care.
  3. Support.  I’ve dealt with a lot of stress over the years and, frankly, been around a lot of people who I didn’t like and didn’t particularly like me.  These things aren’t healthy, especially on a long term basis.  Now, I focus on being around people who are supportive of me and avoiding situations and people who are toxic.
  4. Medical Intervention.  I see my psychiatrist and pain management doctors regularly.  They help me evaluate where I’m at with my pain and how I’m doing overall, as objectively as possible.  I trust both of these doctors to notice and intervene when necessary.
  5. Family.  I spend a lot of time with people who think I’m amazing.  My family watches me closely and they are quick to notice when there is something bothering me.
  6. Medication.  When I learned I was Stage IV, I started taking anti-depressants.  I’ve taken a few different ones now and experimented with the dosages to get them right.  Right now, I’m taking medication that both helps with my mood and also the hot flashes resulting from my hysterectomy.
  7. Advocacy.  I’m a product of my German genetics and upbringing in the Midwest.  Being useful, helping others, and speaking up when I can makes me feel as though I’m utilizing my diagnosis to make a difference.

What is working right now for me is not what will always work and won’t necessarily work for others.  Perhaps this list and my description will at least spark a conversation for others.  Dealing with the weight of a terminal illness amongst the regular stresses of life cannot be discounted.  If you or anyone you love is suffering in silence, please speak up.  Help is available, but you have to ask for it.

Love and light.

The Bell

There have been some blog posts disseminated recently about the use of the bell to celebrate the end of treatment in infusion or radiation centers. The vitriol displayed by many has been a surprise to me. As with many elements of the experience in #CancerLand, so many people have strong opinions, yet it is the way that the angst gets personal is still surprising to me.

The divisions among those of us dealing with breast cancer is so sad to me. We are all dealing with breast cancer, it is an awful terrible no good experience. Yes, some people struggle in different ways. Yes, some of us are going to die of breast cancer. We will only accomplish more if we join our voices, join our resources and work together.

The bell has become one of those things that seems to divide the early stage and metastatic communities.

I first learned of the bell when we thought I was Stage II and my oncoytype score had come back high enough for me to need to do chemo. The binder about chemo that my first medical oncologist gave me had a brief paragraph about the bell. I was honestly focused on getting through treatment as quickly as possible and getting back to “normal” that I didn’t pay much attention. I don’t remember hearing the bell being rung during that first treatment of AC when we still thought I might get to ring the bell at some point.

After we’d learned I was actually Stage IV from the beginning and I heard the bell ring during chemo, I simply sobbed. The bell became representative of what I would never do, celebrate the end of treatment. I remember vaguely that a nurse suggested that I ring the bell on the last day of my AC treatment to my sister and she deflected that question carefully because we were all aware that the end of that particular chemo wasn’t the end of treatment.

I’ll never be done with some kind of treatment.

I might be done with various parts of treatment at times, but the end of a treatment usually signals that my cancer is growing, that I have to switch to another medication to handle the progression. Ending a particular treatment isn’t something to celebrate for those of us with metastatic disease, it is a warning, a reminder that Stage IV metastatic breast cancer is terminal.

Ending a treatment usually = progression

I honestly don’t begrudge anyone their parties, their celebrations for whatever reason. Ending a difficult time is worthy of a celebration. I know how hard chemo is. I remember how difficult radiation is and I had far less radiation than most. I get it, I do.

I think the issue is that those of us who are lifers don’t want it rubbed in our faces. We don’t want or need the visual reminder that we are different, that cancer will kill us. For us, the celebrations are usually smaller, quieter, not as ostentatious, not as visible. I think that’s partially because the checkups are more often, the scans more frequent and last longer. I think it’s also partially because we are shoring up our energy, our funds, our resilience for the next encounter.

We’re tired. Lifelong treatment is exhausting.

It is my opinion that some separation is a good thing. My infusion center is pretty big and I usually ask for a bed. The chairs, you see, are at the front. The beds are usually reserved for the sickest patient, the ones who come from a hospital bed. Even though my monthly infusion is only for 30 minutes, I don’t mind laying down. And the bonus is that the beds are the farthest from the bell you can get.

Is that the right answer?

I’ve heard of others asking for additional signs to be put beside the bell, to remind metastatic patients that they can ring the bell too at the end of infusions. That’s a different answer. Maybe that’s the right answer.

Maybe the answer is empathy. Understanding that others have different experiences. Understanding that celebrating a milestone too loudly can affect others. Understanding that celebrating a milestone is a demonstration of hope, of looking forward and leaving bad experiences behind.

Whatever the overall answer, I’m content to sit in my spot towards the back, away from the bell, and leave others to their celebrations. My version of empathy is to keep to myself during those celebrations and not to remind each of them that they have a 30% chance of becoming me, of developing metastatic disease despite finishing treatment, despite ringing the bell.

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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/