Write, He Said… The Widow Diaries (Chapter 1)

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Write, he said. In October of 2010 my late husband, Chuck encouraged me to write about my first cancer diagnosis, he felt it would be good for me to tell my story and to get my thoughts out of my head and onto my blog. Seven years later he died after a far too short battle with an uncommon and aggressive form of kidney cancer.

 

In the seven years and forty-six days since I first walked into the ER and woke up in the ICU I had ten surgeries, 62 radiation treatments, fought cancer twice, and my husband was diagnosed with and died from what we first believed were kidney stones. On October 10, 2010 I couldn’t have imagined (not even in my very worst nightmares) the days that laid ahead for the myself and Chuck. I certainly never imagined Chuck would die just eighteen days after our twentieth wedding anniversary or that I would spend our twentieth anniversary putting together a walker for my dying husband.

 

I never wrote about Chuck’s cancer, because it wasn’t my story to tell and to be perfectly honest it was almost too unreal to wrap my head around. I was sure my brave, strong husband would beat it, that there would be a miracle, that the next treatment would work, and drive his cancer into remission. His first oncologist told us people with Chuck’s condition live three years, Chuck lived one year and two months from the day he was diagnosed. Chuck was already sick and on a clinical trial when at my five-year scans the doctors found that my cancer had come back. It was all too much to believe, it was all too much handle. I never wrote about my second bout with cancer because I didn’t have time to muse about what was happening to me. I didn’t have it in me to feel sorry for myself or be scared, I had to be okay. By the time I had my brain surgery in May the clinical trial Chuck was on had failed, the cancer had grown two to three times in size and spread, he was on a chemo drug that was making him terribly ill. I didn’t write, because I couldn’t write. I refused to believe that Chuck would die. I was delusional and very, very wrong.

 

So, here I am, a widow, living alone for the first time in my life. I am sad, and scared, and lonely; my heart is broken, shattered. My world is in ruins. I’m shocked, and lost. There is a lot of uncertainty these days, and I hate uncertainty. I like definite, sure, and sturdy. I depend on definite and stable. I depended on Chuck, possibly too much. It’s been two months and fifteen days since Chuck passed from this mortal coil. I’ve had good days, bad days, and very, very bad days. I’ve had days when I’ve felt empty, lost, and alone. I’ve had days when I’ve felt accomplished and sure of myself, and I’ve had days when I felt my ability to function, get out of bed, feed myself and the cats, and to behave like a functioning adult somehow indicated that I didn’t love or miss Chuck enough, that somehow, I was dishonoring Chuck’s memory with my ability to be okay, that I was not grieving his loss properly or deeply enough. I questioned my love and devotion to Chuck. Why wasn’t I a basket case? Why was I able to function while other widows in the Facebook group I joined were not? Is my strength a character flaw? Am I in denial? Is there worst yet to come?

 

It’s a rainy Saturday and I’m home alone with nowhere to be and no plans for the next few days so I have time to feel all the feels and the reality of Chuck’s absence is very real. I’m so sad it physically hurts.

 

Write, he said, so here I am seven years and four months since I walked into that ER; seven years since Chuck encouraged me to write to help me deal with my first cancer diagnosis. Truthfully, the first blog helped save my sanity, it gave me something to be accountable to every day. It gave me a way to explain what was happening, it gave me a place to download each day’s data into daily bite-sized bits I could digest and understand. Truthfully, I believe it’s some of my very best writing.

 

So, here I am hurting, confused, and overwhelmed. Write, he said and so I shall; to honor his memory and because it’s really the only thing that makes sense right now. I can’t guarantee that I’ll be as faithful to this as I was the 365 Days of Carol Anne Cancer Diaries because as I’ve learned over the last seven years nothing is certain and nothing is set in stone.

 

~  Carol Anne

 

 

 

Maybe we Broke a Mirror

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Thinking Spot

 

Preface

Six years ago, I blogged my way through my cancer journey and I promised I would always share my truth, good, bad, or indifferent. Today is the seven-year anniversary of the start of my journey. A lot has happened since then.

I haven’t written much about this latest cancer diagnosis or Chuck’s diagnosis; mostly because it’s almost too much to think about. I try not to feel sorry for myself I try to remain positive and to look forward. I work hard to be brave and strong, but today on the anniversary of the start of my long cancer journey it’s difficult not to look forward with trepidation and anxiety and even harder to look back without bitterness and anger at the cruelty of the universe. It’s been seven years of anxiety and fear, it’s hard not to wonder what we did to deserve the last seven years of our lives. Did we break a mirror?

 

Maybe we Broke a Mirror: 7 Years in the Life of a Cancer Survivor

 

Seven years ago, today we learned that life changes in a heartbeat and is terrifyingly fragile and impermanent. Seven years ago, I walked into an ER in one hospital and was transported to the ICU of another. I woke up five days later in said ICU on a breathing tube. I was surrounded by family coaxing me to breathe. I have almost no memory of most of those five days. In the days that followed I learned that I’d had brain surgery, an extensive skin graft, a cancer diagnosis and was totally and completely and permanently bald.

In the years that followed there would be another skin graft, thirty-two radiation treatments, another major surgery, in which the plastic surgeon took the trapezius muscle from my back to repair the damage the radiation treatments did to my scalp, and then two months later, in February 2012, there was yet another skin graft to help my scalp recover from the previous surgery. I came home with a wound vac that helped with the drainage from the surgical site.

It would be four more years before my head would be healed enough for me to with any regularity wear the pretty red wig I bought in February 2011. It was 2016, and after six years of living through three major surgeries, four minor surgeries, thirty-two radiation treatments, countless scans and what felt like hundreds of doctor appointments I felt safe as I neared my five-year cancer-free mark. In all honesty I saw the five-year scans as a formality. We had no idea the worst was yet to come, just as we thought we were at the finish line, just when we felt we were safe the universe ripped the ground out from underneath us. I didn’t, I couldn’t, see September 2016 coming. Earlier in the summer Chuck had pain in his lower back, side, and groin. We assumed he had kidney stones and went to see our family doctor and then a local urologist. Scans revealed Chuck has kidney cancer and he would need to have his left kidney and adrenal gland removed. Surgery was scheduled for October 26th. Surgery went a little longer than expected, but aside from the longer surgery all went well and the doctor was confident he’d removed all the cancer. I breathed a sigh of relief and hoped for it to be stage 1. I told you I was unable to see September coming, well I most certainly didn’t see November 2016 coming when the pathology from Chuck’s surgery not only revealed Chuck’s cancer to be stage four, but also an uncommon and aggressive form of kidney cancer; type II papillary renal cell carcinoma for which there is no standard of treatment. I was blown away by the diagnosis, I’d had cancer and survived, I assumed that meant Chuck was safe because how many couples have you heard of both having cancer? This wasn’t supposed to be happening, not now, not to Chuck, not to us. We’d already fought this battle. In the six years prior, I never once questioned why or lost my faith. I still wholeheartedly believe I am alive and hopefully well by the power of prayer, but Chuck’s cancer was a horse of a different color. Graham Greene writes, “You cannot conceive, nor can I, of the appalling strangeness of the mercy of God.” I’m not even sure what that means, but it sticks in my head taunting me like a wayward earworm. I don’t believe in a God who would bring you to your knees in order to coerce you to seek him out all the more, yet I’ve read experiencing a ‘dark night of the soul’ and coming out the other side brings us to a deeper faith. But in the darkness how do you beg for mercy from a God you want to pummel? How did Mother Theresa not lose her faith when she felt a profound absence of Christ for so long? How do you pray for a miracle from a God from whom you’d like to loudly demand answers? (Why us? Why now?)

By January 2017 Chuck was in a clinical trial at Penn and we were hopeful. My five-year scans were scheduled and I looked forward to being declared five years cancer-free and being able to move on with my life. I dreamt of planning a big party to celebrate. I planned to go back to work (it’s hard to get a job when you live in hospitals and doctor’s offices), I was ready to focus on Chuck’s recovery.

I told you I didn’t see Chuck’s diagnosis or pathology coming. February 2017 was impossible to predict. On a snowy February 10th the phone rang, there was something on my five-year scans, my cancer was back. Impossible. At my four-year appointment I was given the option of being released from the practice, I was four years cancer-free and  my new oncologist said, basal cell carcinoma just doesn’t behave that way. I greedily decided to stay on one more year, I wanted the assurance of five cancer-free years. I wanted a party damn it!

In late February I started losing my eyesight, the tumor in my right occipital lobe was eating away at my eyesight. I’d already lost some hearing in my left ear from the first radiation treatments and now I was losing the sight in the left side of my left and right eyes. A brain biopsy was scheduled for April 5th, the pathology revealed the basal cell carcinoma that had invaded my skull seven years earlier had now invaded my brain. The prevailing thought is that microscopic cells from my original cancer hid out and grew until they could finally be seen. Surgery was scheduled for Monday, May 22nd. By May the clinical trial drug Chuck was on had failed and Chuck was on a chemo drug and very sick and in a lot of pain. He was with me for the surgery and managed to bring me home from the hospital four days later, but was too sick to be at the hospital with me while I recovered. Surgery was successful, the surgeon cut out as much of the cancer as was safe. I started 30 more radiation treatments on June 20th.

By July Chuck had moved on to immunotherapy treatments and we were both having cancer treatments at two separate hospitals in two different states. An August MRI revealed the surgery and radiation treatments had eradicated all of my cancer. Unfortunately, Chuck’s August scans revealed slower growth, but still growth and in September his oncologist decided the immunotherapy was unsuccessful and stopped the treatments.

Today is October 11, 2017, Chuck is currently on another chemo drug and I am awaiting another scan later in the month. It’s seven years later and I’m back at the beginning of the countdown clock to five years cancer-free. It’s seven years later and we both face an uncertain future at a time when I believed we’d be enjoying the second half of our lives, I’m not sure I’ll ever feel safe again.

I wish I had some thoughtful words of wisdom for you. I wish I had inspiring marching orders to send you out into the world with, but all I can offer is, say I love you, say I’m sorry, be grateful for family, friends, and pets, life changes in a heartbeat and is terrifyingly fragile and impermanent. Pray for miracles.

You Can Survive Anything, but Can you Live Through It?

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This is actually a paper I wrote for the English Lit class I’m taking this semester, but it’s probably one of the better things I’ve written in a while so I’m using it as my first blog post in I don’t even know how long.

 

You don’t realize what you can survive until you survive it. You don’t know how you’ll get through until you get through and sometimes even then you don’t quite understand how you got through. Sometimes life blindsides you and you just go through the motions in order to survive because that’s all you can do. And, sometimes, you just put one foot in front of the other and breathe just to make it to the next day.

 

For me it wasn’t one complete poem, but instead lines from that poem that really spoke to me. In poem 372 Emily writes,

The Feet, mechanical, go round –

A Wooden way

Of Ground, or Air, or Ought –

Regardless grown,

A Quartz contentment, like a stone –

 

She closes with, “First – Chill – then Stupor – then the letting go –“

 

Her words speak to me because the last six years of my life have been a study in the frailty of life, the speed at which life can change, the unbelievably cruel and sudden randomness of it all, grief, and how to wake up each morning and get out of bed and put one foot in front of the other every day and face it all again. There’s been so much change and so much loss; it’s been bewildering, terrifying, and sad.

 

On the third Friday in October 2010 I woke up permanently bald in the ICU, on a breathing tube, with a cancer diagnosis. In the years since that Friday there have been five more surgeries in addition to the two before I woke up, 32 radiation treatments, and a whole lot of fear, anxiety, and loss. If you would have told me six years ago that I would be sitting here writing this bald, four years cancer-free, without a best friend and my father I would have run screaming from the room.

 

“The Feet, mechanical, go round –“

“The Feet, mechanical, go round –“ spoke so deeply to me because while I was sick and undergoing treatments so many people told me how brave I was and I’m quite certain that it was less bravery and more just having to get up every morning and survive until the next morning and do it all over again. Emily’s words spoke to me because there we were in the quiet of recovery, my last surgery had been in 2102 and I was for the most part whole and two years cancer-free. I had three more years of scans and oncologist appointments and follow-ups, I was not yet in the clear, but I was whole and healthy and strong. I’d put my mechanical feet one in front of the other and made it into a clearing.

 

“The Feet, mechanical, go round –“

The quiet and the calm were to be short-lived. “The Feet, mechanical, go round –“ spoke so deeply to me because as unbelievable as waking up bald in the ICU with a cancer diagnosis was even the most creative and twisted horror writers could not have dreamt up the 352 days between Sunday afternoon, August 31, 2014 and Tuesday morning, August 18, 2015. In those 352 days my phone would ring twice, once announcing a death, and once telling us to come quickly my father was dying. In between the two phone calls were two more deaths, my husband’s grandmother, and my father-in-law. I was/am blindsided, bewildered, broken, sad, and exhausted from the constant state of running from worrisome thing to worrisome thing for 352 days and yet I was fine, and in all honesty I’m almost always fine.

 

“The Feet, mechanical, go round –“

“The Feet, mechanical, go round –“ spoke so deeply to me because, despite being of the always-fine variety I was worried and not a little ashamed of how okay I was/am. I’ve somehow made it through last six years of hospitals, nursing homes, hospices, funeral homes and cemeteries intact, frighteningly so. “The Feet, mechanical, go round –“ is self-preservation, it’s a defense mechanism the mind uses to get the body through the day; falling apart is a luxury only the rich can afford.

 

First – Chill – then Stupor – then the letting go –

It took this class, the Bryant assignment to be exact to finally shatter me and send me to pieces. I made it through “Thanatopsis” pretty much okay, a little melancholy, but mostly whole and okay. Once I started reading “The Black Snake” by Mary Oliver and got to the verse that reads, “he is as beautiful and quiet as a dead brother. I leave him under the leaves.” I read the words, I leave him under the leaves and shattered, I went to pieces and honestly, I fled the kitchen to get away from my book and the sheet of paper “The Black Snake” was printed on. I physically couldn’t be in the same room with it. It was as confusing as it was traumatic, but it was an opening and the start of me not being fine.

 

First – Chill – then Stupor – then the letting go –

I never got a chance to mourn Jenn (the phone call announcing her sudden death set in motion the following 351 days) because two weeks later dad went back in the hospital and Grandmom moved to hospice on the same day. Grandmom died two days later and dad set out on almost a year of ups and downs and then mostly downs. My father-in-law died 29 days before dear old dad. I lived in the stupor; I put my two mechanical feet one in front of the other every day because it was the only way I knew how to survive. I was okay for so long because “The Feet, mechanical, go round –“ but here in the quiet of the new year surrounded by the words of great literature – then the letting go.

 

The New Mrs. D Conquers the Roller Coaster of Life

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Oh hey! Hi there. I know it’s been quite some time since last we spoke. I’m trying to rectify that and will do more to rectify it in the coming year. Today I’m dipping my toes back in to the pond with something I’ve never written before, a book review, which as it turns out fits well with the book I’m about to review.

 

But before we get to the actual book review I have to tell you a story. In August, after a long year of ups and downs, I love my father to congestive heart failure; I was shattered. No matter how long someone’s sick you’re never really prepared for the end to come. In September while I was early in my mourning phase I read a sentence in blog that spoke to me, no, that’s not correct; it shouted at me. Celeste, at Learn Her wrote about losing her father saying, “…Like riding a rollercoaster you were only pretending to be brave enough for.” Those words reached out of the screen and said, I understand how you feel, I’ve been there, I know.

 

I asked Celeste if I could quote her in a future blog and then promptly stopped writing. I’m sorry about that, I sort of lost myself there for a while. Celeste’s quote could be the guiding principle of “The New Mrs. D” because as it turns out, life in general is “…Like riding a rollercoaster you were only pretending to be brave enough for.”

 

When I chose “The New Mrs. D” by Heather Hill as my first book to review I thought it would be just another light and fluffy chick lit book, a fun read to pass the time and occupy my mind; turns out it was much more than that.

 

I have to admit that there were parts I didn’t enjoy and when I first started reading I was like, “A bride married to a guy with a porn addiction, meh,” but I kept reading and I was pleasantly surprised. As the book goes on there’s a whole lot of girl power, healing, and personal breakthroughs. I was looking for light and fluffy and I found it along with a few inspiring thoughts on life, living, and being your own authentic self while riding life’s roller coaster.

 

Please Note:  I received this book free from CLP Book Tours in exchange for a review, all opinions are my own.

 

 

New Fall Season Scorecard

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Deduct IQ points from me if you want to, but I love me some tee vee. I look forward to the new fall season as much as I look forward to presidential election years. It’s been a bittersweet season here at Soapboxville and I wasn’t feeling well last week, but two days of cleaning and doing housework first thing in the morning freed up my afternoons for binge watching to catch up on the new fall season’s shows. My scorecard for this season’s shows is below.

 

 

Sunday

B     Blood and Oil — What can I say? I like I like nighttime soaps. I very much enjoyed this one. This is definitely a guilty pleasure.
B     Quantico — I really enjoyed this soapy nighttime FBI drama. I like the suspenseful tone and plot line.
n/a     Indian Summer on Masterpiece — (I haven’t watched this one yet, it’s still on the DVR, it’s 90 minutes and I’m still playing catch up from not feeling well last week)

 

 

Monday

C+     Gotham — A dark show goes even darker. I liked this show better last season, the hubs still loves it.
B-     Big Bang Theory — Disappointing, I don’t want BBT to follow relationship woes. Last season was disappointing, it doesn’t seem this season is off to any better a start. The second episode was a little better, but still I don’t want BBT to follow bummer relationship drama.
F     Life in Pieces — My vote for first cancelled series of the new fall season. I didn’t like the second episode either, it’s been deleted from the DVR.

 

A     Switched at Birth —  This show keeps an odd schedule and had already started its new season before the rest of the pack, but I love this show and have since it debuted so I believe it deserves a place on my new fall scorecard. This is one of the shows that I enjoy and have for quite a while but am starting to believe is reaching its eventual conclusion.

 

 

Tuesday

A+     The Muppets — Very entertaining. The first two episodes have been great. So far this is everything I want it to be. They certainly are pulling big time guests.
F     Scream Queens — Awful, it.was.just.so.bad. I didn’t make it through the first hour of the two hour season premiere. I hated this, I’d vote for it to be one of the first to be cancelled but experience tells me this is the kind of show a lot of people love.
A     Grandfathered — I loved this one, good writing, good story, good acting, John Stamos still has charisma.
B     The Grinder — This was just okay. I was sort of interested but not entertained, amused or captivated. I like Rob Lowe and Fred Savage but the first episode was just okay. I’m going to keep watching but I definitely didn’t love this one. Maybe it would fare better if Fox gives it a new time when it’s not following Grandfathered, against which it doesn’t stand up so well.

 

 

Wednesday

n/a*     Goldbergs — The hubs loves this, I tolerate it because he likes it.  *It wouldn’t be fair to grade this because it’s not really my show.
A+     Nashville — Didn’t disappoint, Love this show. I’m so happy it was renewed for this season. I think there were rumblings of this being its last season so I hope either ratings improve and it gets to continue or they give it a fitting final season. I’ll refrain from writing more in case I’m not the only one not all caught up on the new fall season. No spoilers here.
n/a*     Moonbeam City — I thought I’d try this cartoon cop drama even though it’s out of my genre, I made it 4 minutes and deleted it from the DVR. Cartoons and cop dramas just aren’t my thing.  *It wouldn’t be fair to grade this, it just wasn’t my thing.

 

*** I’m wondering where the new season of Top Chef is, I haven’t read anything at all about when the new season, reportedly shot in California, will debut. I love this show and can’t wait for its return. ***

 

 

 

Thursday

A     Grey’s Anatomy — I circled this one for days because I’m certain I can’t watch people turn life support off and this happens a lot on Grey’s. I wasn’t sure if I was going to watch this season and the possibility exists that it’ll get too heavy for me later in the season. That said, I’m glad I watched the first episode of the new season, it was a great episode. I do however believe this series is reaching it’s natural conclusion. FYI I also feel this way about The Big Bang Theory, the actors are getting too old for their roles.

 

 

Friday

A     Shark Tank — I like this show a lot, there’s not much to say about it. I enjoyed Ashton Kutcher as a guest shark on the first episode, he came as close to calling Kevin O’Leary aka Mr. Wonderful a douche bag as anyone could on primetime TV.
C-     Real Time with Bill Maher — I’m losing patience with Bill and he and his show are starting to bore me. I thought he blew this week’s interview with Jane Goodall and bordered on disrespectful and totally out of his league with her.

 

 

 

Netflix

 

I’m currently watching and rewatching West Wing, Gilmore Girls, and M*A*S*H on Netflix streaming. I’ll be back tomorrow to write about my Netflix watching habits.