cancer sucks

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.

Don’t Feed the Bears & Don’t Make the Bald Woman Uncomfortable

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I’d like to share a bit of advice with you all tonight…

Please don’t feed the bears and please don’t make the badly scarred and bald woman feel (more) uncomfortable (than she is).

I just must attract people, odd people. That’s all there is to it. I’ve had two uncomfortable experiences over the past two weeks and I was polite to both people when I really didn’t want to be.

Last Thursday at the home, dad’s social worker asked me where I got the tattoo. I don’t have a tattoo but I knew what he was talking about because he’d just walked up from behind me so I knew he meant my scar. I had surgery in December 2011 to take my Trapezius muscle from my back and turn it upside to put on my head to cover a hole the radiation wore in the new skin on my head. It left a pretty gnarly scar that makes me feel deformed and maimed. So I’m less than receptive to conversations about my scar from strangers who walk up and glibly ask me stupid shit like, “Where’d you get the tattoo?” He had a pronounced limp, I didn’t walk up to him at any point during dad’s stay and say, “Dude! Where’d you get that limp?”

Then today we were eating lunch at the diner after my doctor appointment and an older woman walked up to me and asked me if I was in chemo. I told her no and went back to eating because I sort of wanted the conversation to end there but she went on to tell me about this local hairdresser, Martino who gives away wigs. I politely told her I knew about him and again hoped she’d go on her merry way but she continued talking, telling me she’d had breast cancer and lung cancer and that she’s a two time survivor. I offered niceties and went back to eating and still she continued on asking me about my cancer, wrongly assuming that I have breast cancer because of my pink scarf. I told her a brief version of my story and said I was two years cancer-free (and I just know she was dying to ask me how I’m still bald if I’m two years cancer-free) before she finally left our table but not before grabbing my shoulder and saying, “God bless you.” The “God bless you” was what sent the whole thing over the edge, I don’t want to feel pitied and she was the second person to do it in two weeks. The social worker said to me as he was walking away, “Wow, you do good for being here all day [after having had brain surgery.]” ß the part in brackets was implied by the look in his eyes.

Now I know the social worker didn’t mean any harm and I know the woman today just wanted to let me know where to get a free wig but I don’t want to be a circus animal (I don’t like to be on display on my very best days) and I don’t want to be the cancer patient poster child. Sometimes I want to sit down and eat lunch with my husband and not be reminded that I’m bald or of what I’ve survived and sometimes I want to stand on the porch with my father and not be reminded that I’m hideously scarred.

It’s hard to feel normal or have a sense of normalcy when you wake up every morning bald and badly scarred so please don’t walk up out of the clear blue sky and ask someone about their scars or their bald head. Those are conversations to be had in the right setting when the mood/energy is right. My reality is there every time I look in the mirror so please don’t feel it’s okay to bring it up just because you want to know or feel like talking.

PLEASE NOTE:  Close friends and family this does not include you. If you want to sit down and ask me about how it feels to be bald and scarred and you’re not afraid of a few tears I’m an open book as anyone who has ever read my blog knows.

Crying Uncle

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I know people mean well and so they say that scars add character or scars fade (some don’t) or it’s better to be scarred than have cancer. I know they all mean well and that no one knows the exact right thing to say but no one but me has to look in the mirror. This is my 7th surgery over the past 4 years and from those 7 surgeries I’ve lost my hair, the ability to wear a wig, the full use of my left shoulder, and have now gained a big noticeable scar right there in the middle of my face. I’ve lost so much and so much damage has been done to me, it’s overwhelming.

I’m so grateful to God to be cancer-free and the rational me knows appearances shouldn’t matter in the grand scheme of things but yesterday, which I thought would be nothing, was my undoing. I accepted waking up with no hair, I accepted in order to help my head heal I’d have to lose some use of my arm, I accept the radiation treatments that saved my life also damaged my skin and I will probably never be fully healed, I accepted that my nose would have a scar from the first Mohs surgery. How much more am I supposed to just accept and be okay with?

Why is this happening to me? To whoever I’ve wronged or for whatever I’ve done to fuck up my karma so bad, I’m sorry. I’m crying uncle. For whatever it is that I have done, you’ve successfully punished me. I am broken. Please stop.

NaBloPoMo Day 26 — 3 Years Gone & I Am Still Not Whole

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I saw that a fellow blogger also wrote about this article today.

http://gawker.com/positivity-is-bullshit-when-you-have-cancer-1469975747

I think another misconception the media sells is the mistaken idea that once your treatments are over you’re perfectly healthy again — you’re not. You see these Cancer Center commercials and they show this man walking out ringing a bell after his last treatment, it looks like a parade. Parenthood’s storyline this year is Kristina Braverman running for mayor of Berkley just 1 year after surviving breast cancer, brave, radiant, hair all grown back and perfect.

I blogged my way through surgery and cancer and radiation treatments, I told myself I just had to be brave and think positive, I just had to face each day head-on to make it because that’s what you see on TV, brave radiant cancer warriors, inspiring men, women, and God help us children.

What they don’t show you are the down days, the days when the radiation machine is broken pushing your end date ever further from reach or the days when you have that first MRI and there’s something there but they don’t know what and your neurosurgeon walks out of the room leaving you weeping with the words, “Don’t let this affect your life.”

They also don’t talk much about radiation treatments. Hell, even I said to myself upon learning that I’d have radiation and not chemo, “Well I’m getting off easy it’s the easy cancer treatment.” 3 skin grafts and a muscle flap surgery later there are still areas of skin that have not grown back on my head, which keep me from keeping wearing a wig. The skin still healing from the first 2 skin grafts was damaged by the radiation.

They don’t show people telling you, “Oh you have the good cancer” or the asshole asking, “When is your hair going to grow back? Oh, it’s not? Well then when are you going to start wearing a wig?” As if it is somehow his business and I somehow offend him by wearing a scarf.

They don’t show you the endless scans and follow-ups and the overwhelming all-consuming fear every time you have a scan. Will it come back? Is this the time? Am I living on borrowed time? When will my number come up? 5 years is the supposed benchmark for survivorship but I can think of plenty of people who’ve had it come back many many years later, which leaves me to wonder if I’ll ever be safe.

After cancer treatments end and we’re “cured” society and the media somehow expect us to be radiant, baptized by the fire, saved and counting our many blessings. It’s true the strongest steel is forged in fire but I don’t think you’ll find a great many jubilant steel beams.

I am grateful for my life, and I hope and pray I never have to live through cancer again and I looked for answers and as to what the universe was trying to teach me but when I see pieces like this it just pisses me off. They should do a reality show, The Cancer Diaries and film cancer patients’ day-to-day lives. I think the world would see that most of us are not always negative nor are we always positive — Is anybody? — and that all of us are just trying to get through each day as intact as humanly possible.