Major Surgery & the Road to Recovery

Cry for a While then Choose to Smile Beautifully

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The third prompt during last night’s Lacuna Loft Unspoken Ink writing group was cry for a while then choose to smile beautifully.  I’m not at all certain that the changes these last two years have brought were the result of choices nor do I believe they are in any way serendipitous. Maybe God brought me to this point, maybe they are the result of a natural progression. I don’t really know the whys and wherefores and perhaps it’s better that way.

 

It was truly the worst of times, it was the best of times or is it the other way around? It was the best of times, it was the worst of times.  What was Dickens getting at?

 

You take the good, you take the bad, and there you have the facts of life.  Where was the ‘80s sitcom going with its theme song? Where am I going with this piece? My life? Myself?

 

Chuck is dead, my cancer has either come back or my brain is being eaten by the radiation that (hopefully) decimated Larry. And yet, I’m living a life I didn’t know was possible or available to me. Through therapy and art, I’ve grown. I’ve learned my own self-worth. I’m likeable. I’ve learned that I am worth people’s time and that people do want to spend time with me and are not just tolerating me.

 

In the year and some odd months since I melted down in the hospital about my Kindle not charging. I’ve learned so much about myself and my hang ups and I continue to learn who and what I am. I’m more self-assured, I’m making and have made new friends. I am growing as a person. I am so happy and grateful for this new internal life that I didn’t understand I was worthy of or really even knew existed. I have found my inner feet, and they are strong and sturdy and beautiful and brave and likeable. I don’t hate myself anymore. I don’t feel I am less than and deserve less than everyone else. I’m lighter. I’m not weighed down with insecurity and self-loathing.

 

But, how can I be better when Chuck is gone? I’m more alone than I have ever been in my life. I went from my parents’ home to my husband’s home. I’ve never been on my own before. The house still feels empty and silent when I sneeze and there’s no one there to say, God Bless You. I still have days when my greatest accomplishment is getting out of bed and staying out. Where was this better, brighter me when Chuck was still alive? Where was this person while I was healthy and young? How did the worst days of my life bring about a better, stronger me? Did the worst of times forge this new inner life because there was nothing left to do but live? Did my battered and damaged brain send me the message, survival is insufficient? Did God?

 

Why did Chuck have to get sick? Why did my cancer have to come back right when I thought there would be smooth sailing ahead? Why did Chuck have to die? Did all these horrible, terrible, scary things have to happen to afford me this better inner life? Is sorrow the price of a beautiful smile?

 

Maybe the bravest, boldest, and brightest among us have nothing left to lose?

 

 

 

Creating Art Heals

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Lately, I’ve been thinking a lot about how important art and creativity have been to my recovery. I honestly believe I am physically and mentally healthier because of the creative endeavors I am privileged to be a part of.

 

Last summer I walked across the street to the cancer center and joined a cancer survivors art discovery workshop. I only got to go once before Chuck was too sick for me to leave him home alone. But, then in October I was blessed with an invitation to join an online creative workshop my friend was leading for Lacuna Loft, an online cancer support project for cancer survivors and caregivers ages 18-39. I’m actually older than 39 so, shhhhh….. don’t tell. Actually, I think they’ve extended the age to 45 so, I’m good for now. No, I won’t tell you how old I am, a lady never tells her age. I’m both a cancer survivor and a caregiver, though Chuck really didn’t live long enough for me to be a caregiver for very long.

 

In the last two years my husband battled a very aggressive form of kidney cancer, my cancer returned and took some of my eyesight with it, Chuck died, and I am yet again facing the possibility of my cancer being back or the radiation that cured it damaging my brain. I believe I could not get through these days without the art and writing programs I participate in. It took a while after Chuck passed away for me to get back to participating in Lacuna Loft’s creative art workshops, Let’s Make Stuff and even longer to make it back to the cancer survivors art discovery workshop at the cancer center across the street. When I finally did get back to creating art and being part of groups creating art, life started getting better, I started getting better.

 

I’ve been seeing a therapist since last June. I highly recommend seeing a therapist as a form of selfcare, but I also highly recommend art, and writing, and journaling as means of selfcare. The ninety minutes I spend each week at the cancer survivor’s art discovery workshop are some of the very best of my week and the two hours I periodically spend taking part in the Lacuna Loft Lets Make Stuff creative art workshops allow me to reach out of myself and beyond the grief and loneliness and fear. I’m an incredible multitasker, and by multitasker, I mean I’m fabulous at worrying while I clean the house, pay the bills, cook dinner, etc., etc., etc. You get the picture. But the time I spend painting, or drawing, or working with clay, or writing I am out of my own head. I am focused on one thing and one thing only, creating. I am in the moment. The “What if” monsters are silenced, the voices in my head are quiet, I am quiet and still on the inside. The act of creating somehow puts to sleep the anxious, loud, worrisome parts of my brain while I make art or write. I once told my therapist that I need to be at a full stop at some point or I’m going to go crazy. While I make art or write I am at a full stop; I can breathe, I can be still, I can be at peace. Art heals. And, it’s not just the art, for me it’s the community of being with other survivors for a while.

 

You can, like me, have the absolute very best support system of family, friends, and extended family who’ve adopted you as one of their own, but sometimes you just need to be with those who’ve been down the roads you’ve traveled and seen what you’ve seen and experienced what you’ve experienced. You don’t even have to talk about what you’ve survived or are currently surviving, it’s just comforting to be with what I can only describe as a tribe. Time spent with fellow warriors is also healing. It’s not necessary to be part of a group to reap the benefits and healing that comes from creating art. The doodling, and craft projects, and blogs I write at home are equally calming and quieting. For me, the groups and community are a nice added bonus.

 

I’m visually impaired so, sometimes I cannot keep up with the others, but I make the best of it and both the beautiful people at Lacuna Loft and the amazing women in my art discovery workshop are kind, and gracious, and helpful. I don’t have to be perfect or capable to create art and be part of a community, I just have to be there. Hell, I don’t even have to be good, as you’ll see in my shared “artwork.” Oh yes, I use that term as loosely as it has ever been used. Trust me on that. You’ll see. But in art, and creativity, and selfcare perfect doesn’t matter; doing, and being, and creating matter.

 

Through therapy and taking part in artistic endeavors I’ve stopped being afraid to try something I’m certain I won’t be good at. And, you know what? Sometimes I am actually better than I ever imagined I could be at something new, and that feels pretty darn good.

 

Art isn’t just markers and crayons and glitter and paper, art is also words, and feelings, and expression. I was always sad that I couldn’t make it to the cancer survivors writing workshops at the Hospital of the University of Pennsylvania because I don’t drive and more than eighty dollars to go back and forth in an Uber to a free writing workshop seemed a bit excessive to me. So, I was thrilled when Lacuna Loft posted the signup link for their summer session of Unspoken Ink, an online creative writing workshop. As I’ve said over and over and over again, writing saved my life, writing gave me something to be accountable to during my first cancer journey. That I did not write about Chuck’s cancer and my second go around with the big C and my quest to kick Larry (my tumor) out of my head lessened my wellbeing and my understanding of what was going on around me and what was happening to me. I never took the time to explain things to myself. I never took the time to be accountable to how I was feeling or where I was at in the process. I was just going through the motions, putting each fire out as I came upon it. I didn’t have a deeper understanding of what was going on; possibly because I didn’t want to understand deeply enough to feel the feelings that came along with truly knowing and understanding that nothing was stopping Chuck’s cancer; it was an unstoppable force of destruction. I didn’t want to really understand that not only had my cancer come back and robbed me of a triumphant five years cancer-free party and return to normal life but also my vision, and that there was never going to be a “normal” again. I think it was too terrifying to deeply understand that my husband was dying and I was disabled. But, unconsciously burying those emotions, denying my reality, not sitting down at the end of each day, processing and explaining to myself the events of each day robbed me of stability and sanity, I just didn’t know it until the great Kindle meltdown while I was in the hospital recovering from brain surgery last May.

 

Therapy, and the act of making art, and writing, and taking time for selfcare have allowed me to start processing my emotions again and to explain to myself where I am in this process. Since joining the Unspoken Ink group, I’ve written a few pieces that have helped me write about my grief and my search for faith in all this sickness and loss. In the spring I wrote about the small everyday things that are much bigger than we give them credit for, sometimes getting out of bed is the biggest achievement of the day.  You can read it on Lacuna Loft’s Young Voices blog.

 

The next few blogs are going to be versions of pieces I wrote in the Unspoken Ink group. Some will be the exact words that flowed during the group and others will be cleaned up, edited, and added to versions of pieces I wrote during the group.

 

Art heals…   Art saves…     Art gives voice to emotion and feeling…     Art is life…

 

 

 

 

Some of the “artwork” I’ve created

 

 

It’s Been a Year

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I have to admit, I never thought I’d be back here updating the cancer diaries, but here I am writing to you in the middle of the night, two weeks after my last oncologist appointment; an appointment where I learned a year after my last surgery there is a small amount of the growth. Growth that might be radiation necrosis or tumor growth.

 

A year ago tonight, I was in the PACU unit of the hospital recovering from brain surgery to remove the cancer that stole my eyesight. How could it be I’ve come this far and lost so much in the process only for it to be possible I might be back at the start again? This time as a widow. Why is the universe so cruel? I’m terrified. There’s only so far bravery and tenacity can take you. I can hang in there with the best of them and have for the last eight years, but how many rounds does the universe expect me to fight through? I want my second act damn it. I want to be free from cancer and from fear. I want a life, a full one that does not include MRIs every three months and oncologist appointments and pills three times a day to keep the radiation treatments from eating my brain.

 

 

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.

Writing 101: 3 Songs, Lots of Emotions

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I am participating in Writing 101 on WordPress.com

This started out as the reply to exercise three, which was supposed to be about three of my favorite songs. The exercise directed to just empty my head and write about the emotions connected to these songs. I was sort of stumped because at the time I couldn’t think of three favorite songs. I have so many and I love music so much I wasn’t sure I could pick three. And so I started with “Name” by Goo Goo Dolls and wrote about how the words of this mournful tune whispered in my ear while listening to my headphones on a SEPTA bus on my way to work. The words seeped in to my soul and have remained there. I thought perhaps I would stick with just writing about this one song and call it a day. Because really it just resonates with me to this day. It still makes me cry every time I hear it.

I still had time on the clock and I searched my heart and mind and then it happened, “Galileo” by Indigo Girls popped in to my mind. And I remembered it was the lyrics to this song I posted the day after finding out that the possibility existed that after the first round of 32 radiation treatments there was still cancer there. (FYI: Blessedly, a follow up MRI in October confirmed all the cancer was in fact gone.) Here is where all the emotions connected to that song and that moment came rushing to the top. And it was here where I walked away from this exercise. I thought to myself, how did I get through the day and the days and weeks that followed? How did I wake up every morning and live my life? How did I make it to October?

I was suddenly anxious and upset and I just shut down. I’m not sure the person I am today could be the person I was four years ago. I went back and reread a few of the blog entries that followed and I can’t imagine how I was that strong and resilient. Truth be told, I haven’t read back on many of the 365 Days of Carol Anne posts, but I do believe they are my best writing ever. I freely, openly, and fearlessly wrote my truth on a daily basis for an entire year: the good, the bad, the ugly, and the even uglier. It’s been almost four years since that day, but in that instant, while working on this exercise, I was transported back to that August morning in the neurosurgeon’s examining room, and all the fear and sorrow and loss that I felt came rushing back at me like a tsunami and ran me over like a steamroller.

I know this was supposed to be about our three favorite songs and the emotions connected to them but this writing exercise, which is now two days late, became so much more and took on a life of its own so it took me a few days to actually work through the emotions and put pen to paper and commit this to the web.

Oh, and for the record and to actually complete the exercise, I’ll add “Into the Mystic” by Van Morrison as the third favorite song. I heard it during a lovely scene in the movie “Immediate Family” and fell instantly in love with this beautiful song.