Sunday, November 25, 2018

The Struggle

It's hard to admit when you are struggling. It's hard to admit when things get hard. When the path you are walking suddenly veers sharply to the left. Through a dark wood. With overhung branches blocking out the warm rays of the sun. And crows.

(God, there are a lot of crows in my forest!)

I've always used this blog as a sort of therapy. First to talk about the struggles and joys of raising three young kids. Then to advocate for LGBT rights generally, and to discuss my gay marriage specifically. Then later to process my breast cancer diagnosis and treatment. Through the years, I have used this blog to entertain. To laugh with my friends. To commiserate. To find the silver lining in my notably normal life.

What I've never used this blog to do is to ask for help. I'm going to remedy that situation right now.

I don't need to tell anyone who has been affected by cancer - and way too many of my friends have been - that it is tough. It is difficult emotionally. Financially. Physically. It affects every relationship in your life. It depletes your spouse. It worries your children. It drains your parents. Some friends disappear. Others circle the wagons. The love and support is both sincerely appreciated and mildly suffocating.

While you are undergoing active treatment for cancer, people ask how you are doing. Often. Friends of your parents (who you have never met) tell you they are praying for you every week (in churches you've never attended). Your aunts send you cards. And blankets. And funny wigs. Your friends stop by with food. You are the center of attention in a way that makes you uncomfortable. You want nothing more in the world than to finish your treatment and get back to normal.

What no one tells you - or perhaps they try to tell you but you refuse to believe - is that your old normal no longer exists. There is no going back there because it has vanished. Gone. AWOL. Finished. You can search and search, but you're not going to find it. 

But that's not all. Not only is your normal gone.

So are you.

The you that existed for forty-four years - the only you you've ever known is your entire life - is also gone. The you that was comfortable in her own skin. The you who was finally becoming confident in her own thoughts and words.  The you who enjoyed a hard-scrabbled self-reliance and the fruits of an uphill battle for resiliency. She's gone.

Gone is the body that you knew inside and out. From the straight, oily hair on the top of her head down to the scar on the side of her left foot she procured when her sister pushed her down one day playing in the flood waters at the bottom of Holly Avenue. You knew her intimately. You knew her strengths and weaknesses. You didn't always like her, but you knew what to expect from her.

Yeah, that chick? She left the building.

She's been replaced with a person you do not know. A woman you probably would not befriend if you met her on the street. She's uncertain. She's timid. She suffers from cognitive deficits resulting from the powerful chemo she received that causes her to get confused sometimes. To say the wrong word. To call an item the wrong thing. To drive all the way across town with no memory whatsoever of driving there. As a result, she doubts her thoughts. She doubts her words. She doubts her intelligence - something she always took for granted. She was never the prettiest girl in the room, but dammit, she was smart. She was capable.

Now she is not sure who or what she is. Who or what she is supposed to be.

Ruanita tells me that I'm not the same person I was before. I'm not sure how I'm supposed to respond to that information. That woman is gone. She didn't leave a forwarding address. The me that remains is the only me I have left.

I often wonder if she's enough.

I realize that I am whining. This fact is not lost on me. As a matter of fact, I carry around a hefty little bit of guilt over this. How am I able to whine about all of this...shit...when so many women aren't here to complain? Aren't here to hug their children or kiss their spouses? How can I not be grateful for this second chance I've been given? How can I complain about what I've been through when so many families have been through the same with worse outcomes than mine?

I realize that I am one of the incredibly lucky ones. My story could have very, very easily gone the other way. December 30th will be the two-year anniversary of the end of my active treatment. That was my last day of radiation. I know that many (way TOO many) women do not get to celebrate a 2-year anniversary. So I do appreciate how very lucky I am. And I want to take my second chance and make it into something worthy of the good luck and love I have in my life. This is what I want more than anything, but here's the thing: I have NO idea how to get there.

Because my cancer was stage 3, was quite large, and affected all three levels of my axillary lymph nodes, I received chemotherapy first in an attempt to shrink the tumor and prevent any spreading prior to surgery. This is called neoadjuvant chemotherapy. The goal was to be as aggressive as possible. After I finished chemotherapy, I had a double mastectomy. Following my surgery, the pathology report was not great news. I had 28 lymph nodes removed during surgery. Of those, 14 were still found to be cancerous. Following surgery, I had radiation to the area, with the hope that it would eliminate any remaining cancer.

Today I am healthy and cancer free, but I am obsessed with those 14 lymph nodes. Cancer was still there after all that I endured during chemotherapy. It was still there. And I can't help but think that it had to go...somewhere. Nothing truly disappears. It's hard not to imagine microscopic cancer particles making their way into my liver. Or my bones. Or my brain.

When one thinks this way, every twitch becomes a death sentence. Every normal ache and pain of being 46 years old becomes an inevitable recurrence of cancer. Every day becomes THE DAY. The day the other shoe will most certainly drop. The day those 14 lymph nodes decide to rear their ugly heads once more. Its exhausting being so self-absorbed. Being so self-aware. It's obnoxious and selfish and makes me an incredibly uninteresting person to be around. I know all of this, but I can't seem to get out of my own head. 

This is my struggle.

I've begun seeing a therapist, but I think her sole purpose in life is to make me snot and blubber for 50 minutes straight. I leave her office with a pounding headache every time. I don't know how effective therapy will be at easing my mind or helping me to move past these circumstances, but I have promised myself I would keep an open mind. In the meantime, I am taking it day by day. 

So here is my request.

Please be kind to one another. There are struggles you may know absolutely nothing about.

Thursday, April 26, 2018

BOOK REVIEW: Children of Blood and Bone (Legacy of Orϊsha #1) by Tomi Adeyemi

You may have heard of this book. It has been heralded as the next Harry Potter. Adeyemi, a 23-year-old Nigerian-American first-time author and newcomer to the world of YA literature, received a seven-figure book advance and a movie deal for her debut fantasy novel – the first in a proposed trilogy. You may think to yourself, Seven figures? Could this book possibly be worth seven figures?? I am here to answer that question with a resounding “Yes!”

Children of Blood and Bone follows the story of Zélie Adebola, a strong, fearless young woman living in Orϊsha under the rule of a ruthless king. It is also the story of seemingly-docile Princess Amari who doubts her own inner strength and ability. And Amari’s brother, Prince Inan, who feels bound to family honor and duty to country.

The kingdom of Orϊsha used to hum with magic until King Saran ruthlessly destroyed it. Under his order, access to magic is cut off and the kingdom is purged of all the adult maji, leaving their children completely disempowered. Often referred to as “maggots,” their language and rituals are outlawed and those who have the potential to manifest magic—marked by their snow-white white hair and darker skin—are abused or enslaved. The Raid, as the purge of maji has come to be known, left Zélie without her beloved mother, who was hung from a tree in a fashion reminiscent of lynchings in the American south.

Zélie’s sense of loss and longing is palpable in Adeyemi’s writing, and will feel familiar to anyone who has lost a loved one.

I try not to think of her. But when I do, I think of rice. When Mama was around, the hut always smelled of jollof rice. I think about the way her dark skin glowed like the summer sun, the way her smile made Baba come alive. The way her white hair fuzzed and coiled, an untamed crown that breathed and thrived. I hear the myths that she would tell me at night. Tzain's laughter when they played agbon in the park. Baba's cries as the soldiers wrapped a chain around her neck. Her screams as they dragged her into the dark. The incantations that spewed from her mouth like lava. The magic of death that led her astray. I think about the way her corpse hung from that tree. I think about the king that took her away.
At the beginning of the book, Zélie stumbles upon a mystical artifact that may have the power to bring magic back. She has one shot – one chance in 100 years – and she is determined to strike out against King Saran and return magic to her oppressed people. With the help of her overprotective non-magical brother, Tzain, and a rogue princess, Amari – and on the run from a conflicted and dangerous Prince Inan, determined to earn the affection and respect of his cold-hearted father – she leaves home and begins a 500+-page adventure that kept me riveted from beginning to end.

This book is good. Really good, actually. It is well-written. The characters are great. It is fun. It is exciting. But beyond all of that, this book is important, and I’ll tell you why. Though every single character in the book is a person of color, I found myself imagining some of the characters as white people. The book is clearly set in an African-like imagined world and relies heavily on African terms and African myths. The characters even speak Yoruba, a real language spoken by the Yoruba people of Nigeria. Despite descriptions of clearly dark-skinned people, my brain still white-washed them. I’m not proud of this. I don’t like that I did this. I find it extremely distasteful, but my brain transposed white features onto people of color, nonetheless. And I think the reason I did this is because the books we read and the television we watch and the movies we view are all targeted toward a white-centric audience. It is ingrained in us from an early age that the heroes are white. (Black Panther aside [which was a phenomenal movie!], the new highly-hyped Marvel movie coming out this weekend is pretty dang white – and a little green if you count the Hulk.) Sure, you can argue that the media we digest today is much more diverse than it used to be – and that’s true – but we still have a long, loooooong way to go. And books like Children of Blood and Bone need to be published and consumed and enjoyed by all of us.

Children of Blood and Bone is a love story to African culture and people of color. The characters, despite being oppressed and denigrated their entire lives, are strong and resilient. Zélie and Amari, in particular, are stunning young women of extreme talent and ability. Both women start the book doubting themselves – unsure of who and what they are – and the reader watches them grow and mature and become forces with which to be reckoned. They take back dominion over their bodies and their futures. They become bad-ass women who change the world! Now that’s something I can definitely get behind!

In the author’s notes at the end of the book, Adeyemi says that this book was written at a time when “I kept turning on the news and seeing stories of unarmed black men, women, and children being shot by the police. I felt afraid and angry and helpless, but this book was the one thing that made me feel like I could do something about it.” She goes on to mention Jordan Edwards and Tamir Rice. Aiyana Stanley-Jones. Philando Castille. She ends her notes with the following call to action:

“We are all children of blood and bone.
And just like Zélie and Amari, we have the power to change the evils of the world.
We’ve been knocked down for far too long.
Now let’s rise.”

Children and Blood and Bone is a story about love. It is a family saga. A war story. An exciting adventure. A magical romp. A coming of age tale. A “BLACK LIVES MATTER-inspired fantasy novel.” The book seamlessly weaves West African mythology and spirituality with a newly created world that somehow manages to feel familiar to this Midwestern white chick.

Children of Blood and Bone is a call to action. One that you can’t help but feel compelled to answer.

And what about that stunning cover??


Monday, April 16, 2018

Circe by Madeline Miller

When I was born, the name for what I was did not exist.

So begins the story of Circe, eldest and least favorite daughter of Helios, sun god and the mightiest of the Titans. Not pretty enough. Not clever enough. Unloved by both her powerful father and her alluring mother, Circe must find her own way in an unforgiving world.

Early in the book, Circe discovers that she has the power of witchcraft. One tragic act of love, followed by an ill-conceived act of jealousy that will haunt her throughout the book leads Zeus to banish Circe to the deserted island of Aiaia, threatened by her growing skills. There she hones her craft and comes in contact with some of the most famous names in mythology – Daedalus and his son Icarus, Medea, the Minotaur, Odysseus and Penelope, Hermes, and the powerful Athena.  

Her desire to protect what she loves the most leads to a final show-down with Athena. Circe must come to terms with her own power as a woman and as a god and decide, once and for all, where her loyalties lie. I’ll give you a hint.

You threw me to the crows, but it turns out I prefer them to you.

This was a fabulous book. I enjoyed Madeline Miller’s previous book, The Song of Achilles, but Circe won me over 100%. Perhaps it was because it was such a personal story – one woman’s journey – that it resonated with me so completely. We see Circe develop from an unsure, awkward, daddy-worshipping nymph to a strong, resilient, powerful witch. She is not perfect. She makes mistakes. But she rises above her shortcomings and embraces her power as a woman and as a witch.

It is a common saying that women are delicate creatures—flowers, eggs, anything that may be crushed in a moment’s carelessness. If I had ever believed it, I no longer did.

You do not have to be a lover of mythology to enjoy this book. The writing is stunning and there are so many quotable lines that I am in awe of Miller. For being a story about an immortal being, it is incredibly relatable. Circe’s is not a happy story – this is Greek tragedy, after all. You know when she is exiled to Aiaia that her life is not going to be an easy one. You want her to find love, to find happiness. But instead, she is dealt heartache after heartache. But it’s in that heartache that you see her character really develop. And watching her deal with adversity is what makes her story so very relatable – despite being a god. Despite being immortal. Despite being a witch. At heart, she is a woman who has been beaten down time and again by powerful men and a world order that values brute force over intelligence. That values beauty over strength. That values men over women. I don’t know a woman anywhere who could not relate to Circe’s struggles. To the unfairness of the cards she is dealt.

“It is not fair,” I said. “I cannot bear it.”
“Those are two different things,” my grandmother said.

But bear it, she does. The unfairness and everything else life throws at her.

I loved the relationships within the book, the best of which is the relationship between Circe and her son. Motherhood is described so perfectly in this book. It is not all happiness and light. Like all first-time mothers, Circe is ill-prepared for the truth of motherhood.

I did not go easy to motherhood. I faced it as soldiers face their enemies, girded and braced, sword up against the coming blows. Yet all my preparations were not enough.

Circe’s son is not an easy child. He screams incessantly. He never sits still. Though she is a god, he exhausts her to the depth and breadth of her being. No matter how ill-equipped she was for motherhood, however, the love Circe feels for her son is all-encompassing and something to which most parents can relate. The ferocity she feels as a mother was so intense that she thought it would surely be her undoing.

I would look at him and feel a love so sharp it seemed my flesh lay open. I made a list of all the things I would do for him. Scald off my skin. Tear out my eyes. Walk my feet to bones, if only he would be happy and well.

He was not happy. A moment, I thought, I only need one moment without his damp rage in my arms. But there was none. He hated sun. He hated wind. He hated baths. He hated to be clothed, to be naked, to lie on his belly, and his back. He hated this great world and everything in it, and me, so it seemed, most of all.

Have you ever heard a more eloquent description of the ferocious love and drowning uncertainty of parenthood? Miller described it perfectly. Remember that old saying about having your heart forever walking around outside your body? Circe got it.

My madness in those days rose from a new certainty: that at last, I had met the thing the gods could use against me.  

At its heart, Circe is a re-telling of classic mythology with a feminist slant. All of the characters – but particularly the female characters – are fully realized and perfectly written. There is love and madness and murder and mystery and mayhem and dysfunctional families galore, but ultimately, it is the story of one woman claiming agency in a world that has underestimated her from the beginning.

Pretty cool, huh?

Go read it. Now. You will not regret it.

Wednesday, April 11, 2018

Stumbling Around in the Fog

As of this writing, my last chemotherapy treatment was 20 months ago, but I am still finding myself heavily entrenched in the “chemo fog.” Though the term brings to mind cobblestoned alleyways in Victorian England filled with visibility-cloaking vapor and top-hatted gentlemen lurking in the shadows (that’s how everyone pictures fog, right?), the real deal is much less romantic. Much less mysterious.
Mayo Clinic defines chemo fog as: A common term used by cancer survivors to describe thinking and memory problems that can occur after cancer treatment. Chemo fog can also be called chemo brain, chemotherapy-related cognitive impairment or cognitive dysfunction.
Sounds delightful, huh?
During chemo, I spent so much time asleep on my couch, that the fog was not an issue. Then I had a bilateral mastectomy, and the all-encompassing pain of recovery trumped any cognitive concerns. Surgery was followed up by radiation, which again made the fog feel like nothing more than a mosquito bite on a burn victim. Then I had a second surgery to remove my ovaries. Again, I didn’t give a single passing thought to my thoughts.
But now that I am all done? Now that I am cancer-free and adapting to my new normal? The cognitive issues loom large in my mind. Literally and figuratively.
So what type of issues am I having, you ask?
I forget things. I sometimes forget things Ruanita says to me almost as soon as she says them. I forget to do things I tell the kids I am going to do, to their great disappointment. For the first time ever in my life, words are hard. I often find myself, in the middle of a conversation, saying a completely wrong word that has nothing to do with what I am saying. I think it is the right word – until it comes out of my mouth followed by an exclamation of, “What the hell?!” (Okay, full disclosure. Sometimes it’s, “What the fuck?!”) Or I can’t think of a common word at all. I will be in the middle of talking and will stumble over my words. I’ll have to ask, “Ruanita, what is the word I’m trying to think of?” Usually she knows. Twenty years of marriage has that effect. I also have trouble multitasking. If my attention is focused on one thing (reading a book, typing on my laptop), I cannot have a conversation. I can’t focus on more than one thing at a time. Driving is sometimes tough. If I am driving and talking to someone in the car at the same time, I tend to get rattled. Drive through stop signs. Stop in the middle of the street.  Not notice when the light turns to green. I get honked at a lot these days – I have no idea why. I let Ruanita drive more often lately when we are together, which is a huge concession on my part as I have always been the driver in our house and, frankly, Ruanita’s driving scares the holy shit out of me a tiny bit.
For someone who has always prided herself on her intellect, independence, and crafty turn of phrase, I am feeling particularly DUMB and USELESS lately. If my mind was intact, I could better deal with the changes in my body. But with the cognitive issues I’ve been having, it’s easy to feel like my body has forsaken me in Every. Single. Way. And. Means. Possible. (Geez – dramatic much, Shannon?)
Fear not, however. I have SCIENCE!
I just qualified to participate in my 4th clinical study. This one is being sponsored by Wake Forest University and is looking at ways to treat the chemo fog in breast cancer survivors who are experiencing cognitive deficiencies as a result of the strong chemo drugs they use for breast cancer treatment.
I wasn’t sure I would meet the requirements, as I have tried to play off the cognitive issues as “not that bad” or “not too serious.” However, when my doctor recommended the study, I decided to at least see if I would meet the requirements.  
The assessment consisted of a very simple cognitive test. The study nurse read a list of 12 unrelated words. I was supposed to listen and then immediately repeat back as many words as I could remember. The cut-off to participate in the study was being able to repeat seven or fewer words from the list. Piece of cake! I focused intently – excited to prove to myself that I was still sharp. That I was still smart. That I was still me.
As the nurse read the words, I repeated them in my head. When she finished, I immediately repeated back the first four words from the list. Then I paused, wracking my brain to come up with the next word. I knew the 12th word because it was the last word she had said and was the freshest in my memory. I sat and stared at her. I chuckled nervously. I thought and thought and thought some more. Nothing. In the end, I could come up with nothing more than the first four words and the last word – five in total. FIVE. Well below the seven-word cut-off.
Fuck. Me.
(Did I ever mention that cathartic cursing is a byproduct of cancer survivorship?)
I qualified. I am now officially a registered participant in Clinical Trial WFU97116 – A Phase 3 Placebo Controlled Clinical Trial of Donepezil in Chemotherapy Exposed Breast Cancer Survivors with Cognitive Impairment. What is Donepezil? It’s the drug used to treat….wait for it…this is exciting…Alzheimer’s Disease!
I am actually excited about the prospects of:
  1. Finding some possible relief to my symptoms
  2. Being able to once again pull appropriate words from the dark and dusty recesses of my mind rather than uttering the brilliant, “Ummm…uh…ummm”
  3. Contributing to science in some sort of meaningful way that may help the women who come after me
It’s a double blind study, so neither I nor my doctor will know if I am getting Donepezil or a placebo. I suspect I might know if I get the study drug simply based on the side effects – nausea, possible vomiting, and diarrhea (tapering off as the body adjusts to the medication). I have a sensitive stomach, so if there are stomach-related side effects even in the itsy bitsy teeny tiny microscopic print, I will likely experience them.
I pick up the drug tomorrow and start it immediately. If I receive Donepezil and not the placebo, I fully suspect that I will be asked to join MENSA when it is all said and done. I expect to suddenly have a freakishly complete understanding of organic chemistry. And the words flowing forth from my lips will awe the likes of Zadie Smith and Ann Patchett.
On the off chance that I do not become a raging intellectual, I have started reading more and exercising as both are said to help with cognitive deficiencies.
You know, just in case.