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.

4th of July

I’ve lived in places where the 4th of July is the biggest party you can imagine. I still remember seeing the fireworks set to music on the radio in Washington DC when I was a kid and I went to law school in Virginia Beach, which has 5 military bases in very close proximity. Many of our men and women in uniform are truly some of the most patriotic people I’ve ever met.

When it comes to my kiddos, we do talk about how the United States is very different from other places. My husband is a naturalized citizen and truly loves his adopted country, so he is able to talk to the boys from his own unique perspective.

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.

My 2nd Metaversary

March 8, 2017, I received my breast cancer diagnosis and on June 21, 2017, I was told that I had actually been Stage IV from the beginning (aka de novo). I’ve marked the former as my cancerversary for the last two years and yet the latter needs some sort of acknowledgement. It was the latter diagnosis that has literally upended my life while we were still struggling to assimilate the idea of cancer.

That day, a Thursday and the day before my second AC infusion, is irrevocably seared into my memory. The call, early in the day, that I needed to come in, didn’t matter the time, just come. I was in the middle of prepping for a hearing and couldn’t just drop that, so I prepped, went to the hearing and then went to my doctor’s office. Elliot insisted on coming with me, he intuitively knew it was bad. I was in denial and initially told him not to come, that he’d already missed too much work due to my medical appointments and surgeries.

When my first medical oncologist (he retired in late 2017) gave me the news that’s I’d actually been Stage IV for a while, it was paralyzing. My ability to think just stopped and all I could visualize was my kids. I’m sure my doctor gave us some details, but the only detail I remember from the conversation was when he mentioned 10 years as a potential life span. I seized on that comment and asked some clarifying questions. My doctor immediately stopped me and said that 10 years was considered an outlier and that the life expectancy was closer to 2. He talked up the progress made with chemotherapeutic drugs in recent years and was kind and gentle. The very features that I didn’t like in him initially, because it felt paternalistic then, were the very things that I appreciated the most at the time of him delivering such devastating news.

So here I am, I’ve been knowingly living with Stage IV metastatic breast cancer for over 2 years. I’m sure the actual time I’ve had cancer has been longer than 2 years because back on June 21, 2017, I learned that the cancer lesions were in literally every bone. It took some time for that to happen and I’d been feeling pain for several months in the area where a 5 cm tumor had put down roots.

There are things I know now that sometimes I wish I knew then, but in reality the last two years have served as a way to assimilate and understand my diagnosis. I couldn’t have done that more quickly I don’t think. It has literally taken this time to adjust to this new life, these new parameters, the new end point and my new goals.

Cancer has changed everything and has taken a great deal away, yet there is still magic, there are still memories to be made and I’m alive today.

That I’m alive today is something I’m learning to EMBRACE. Today I get to be here with my boys and that’s the most important thing right now.