cancer

I am broken, but not unfixable (the stuff you won’t hear in cancer center commercials)

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you cannot have what is left of me
(it is not yours to take)

First the good news, I am 1-year cancer-free. All the MRIs came back clean. Both the neurosurgeon and oncologist are very happy with my progress. God willing, if the next brain MRI comes back clean I will not need to make an appointment with the neurosurgeon and because the oncologist is so happy with my progress she changed my follow-up MRI schedule from every 3 months to every 6 months.

Now to the honest truth, I think I was a little naive when I ended the 365 Days of Carol Anne project and declared that this blog would no longer be about cancer and everything that surrounds my post cancer progress. I think the reason I am stumbling and searching for what to write about is because I’m not writing about my day-to-day struggles. If you were to read my Facebook you’d read about lunches with friends and days out in the city taking pictures. What you would not find is how hard I’m finding it to get on with the business of living my life.

I have had a hell of a time writing this post. I’ve always written as honestly as I can about this whole experience and I just couldn’t reach inside and find the raw honesty or words. It wasn’t until I took this photo Sunday night and titled it, You Cannot Have What’s Left of Me (it’s not yours to take) that the words began to form and finally flow. I don’t think people, myself included, understand that cancer is not over once treatments are done. I certainly never imagined myself still dealing with the physical and emotional fallout almost 2 years later. There is a commercial for one of the cancer centers that shows the patient ringing a bell after their last treatment. I was morbidly fascinated with this during my treatments. Would I ring a bell? Would there be a triumphant parade-like celebration at the end of my treatments? What would, God willing, my last day of treatments be like? Would I be full of elation and anxious optimism? On that day I was relieved and exhausted and a little weepy and a lot grateful. I was also scared that it would only be a temporary end. You walk out the door from the last treatment and you are not in the clear. The fear and the anxiety do not just roll away because treatments are over.

The happy ending bell-ringing Mardi Gras parade-like commercials don’t tell you that the truth of the matter is you don’t walk out of there secure in the knowledge that you’re cured, or at least I didn’t. There are follow-up tests for quite a few years. The possibility always exists that it can come back. There are milestones to pass. My first MRI after radiation treatments ended showed “something” in the Dura, it could have been damage from the surgery or damage from the radiation treatments or it could have been residual tumor. We wouldn’t know anything until my follow up MRI in October. So from August to October we were unsure whether or not the surgery and 32 radiation treatments got all the cancer. Blessedly the MRI in October found no evidence of tumor.

So here I am, life is as normal as life is going to get. It’s time to pick myself up and get back to the business of living but I’ve grown timid and lazy. I don’t know how to break out of that. I feel lost. I’m not sure what I want to do anymore. I tie myself up with the need for perfection and end up paralyzed with fear. I don’t know how to just do and make it up or learn as I go. I wish I were back in high school (I so totally don’t except I do) and there were guidance counselors to help show me the way.

I am a little lost and a lot unsure. I am broken, but I am not unfixable. My core is still intact and it’s mine. I don’t know where I go from here or how I go about doing it. But know this cancer, you cannot have what is left of me. It is not yours to take. The time will come when I am whole again. I am not the same, I am older and wiser and perhaps one day I will be better for having taken this journey.

Learning to Dance in the Rain (a new wholeness & healing)

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“Life isn’t about waiting for the storm to pass…It’s about learning to dance in the rain.”
—  Vivian Greene

Stormy Wildwood Beach

I don’t know why I’m finding this so hard to write. Last year I bared my soul to you, last year I shared every gory detail of every procedure and here I am unable to write today’s post.  I’ve been thinking about what I want to say for days now and I am coming up dry.

I know I want to tell you…

  • Today is 1 year since my (please God) last radiation treatment.
  • I had a moment on Monday on Wildwood’s boardwalk that reminded me that it really is about learning to dance in the rain.
  • I am in the middle of my 2 quarterly MRIs.
  • I am scared.

I said to you on December 31, 2011, “We are all still here, we are all still standing, and 2012 brings with it the promise of hope.”


it's about learning to dance in the rain

(totally clunky segue) You’ll have to forgive me, I’m all over the place today. I’m struggling with how to tell you that I was furiously happy and completely in the moment Monday as we stood on the seawall and listened and watched and felt as a thunderstorm passed from one end of the island (Wildwood) to the other. I’m struggling with how to tell you that I had an aha moment while huddled under an awning on the boardwalk waiting for the storm to pass. And I am struggling with how to tell you that I am scared.  I want to tell you that I am 1 year cancer-free, but I won’t know the results of the 2 MRIs until July 6 when I see the neurosurgeon and oncologist.

I’m finally putting the pieces of my life back together. I am out and seeing friends, I’m taking photos and reasserting my independence. I am writing a freelance story for my former editor and I’m volunteering to be part of something that I believe helps people. I meditate on wholeness and healing. I am working to put Humpty Dumpty back together again but I’m not quite sure where all the pieces fit now.

Where do audacious, smart, and independent fit?

Where do anxious, terrified, and afraid go?

Can I dance in the rain while I’m terrified?

I don’t know, so I suppose for today I’ll just say that it is all about learning to dance in the rain.

standing on the seawall in my gone fishin' hat

Love & Pink Rubber Galoshes,

~ Carol Anne

I Put the Christmas Tree Away (thoughts on normalcy & moving forward)

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Christmas Tree circa 2009

I took the Christmas Tree down yesterday. I know, you’re saying, “You took the Christmas Tree down in May? What were you waiting for?”

Well actually, I normally keep our tree up all year long and decorate it for each season. Unfortunately, for the last 2 years I haven’t felt up to changing the decorations with each season so it has sat there with only its Christmas lights on it looking sad and neglected with half of the lights burned out, but I’d faithfully turn it on every night. In a way it became a security blanket for me. To me it represented normalcy even if it wasn’t what it once quite was.

I took it down yesterday. I talked about taking it down for months but yesterday was the day. I don’t know why yesterday was the day I finally got the gumption to take it down, but it was. The poor tree was covered in dust and filthy. It had sat there for 2 years unattended to but loved so very much. It was my comfort item. In a way I’m sad that it’s gone but then I look around the living room and I love the space it being gone frees up. It feels like letting go.

I suppose I should also tell you that I spent the other part of yesterday making my next round of medical appointments; blood work and 2 MRIs in June, follow-up appointments with the oncologist, neurosurgeon, and plastic surgeon in July. I’m coming toward the end of my 6 weeks of physical therapy and I am feeling good. As I’ve noted in my many late National Photo Month posts I am sleeping through the night, which is incredible. I’ve had epic runs of insomnia over the past 2 years with patches of less than fitful sleep in between. But now I’m sleeping soundly almost 8 hours every night and I feel great.

I’m feeling good. I feel like a fog has lifted, like I’ve come out of a coma or maybe a deep depression. The physical therapy has given me the use of my left arm back. I’m feeling stronger. I wish the doctors had prescribed physical therapy of some sort when I came out of the hospital in October 2010 if only to get me moving. The physical therapy is helping in so many other ways than just fixing my shoulder. I feel like I’m accomplishing something. I have a sense of purpose. I feel like I’m doing something to help make myself better.

1 biopsy, 4 CAT scans, 4 MRIs, 5 surgeries, 6 weeks of physical therapy, and 32 radiation treatments (not in chronological order) later I am starting to feel normal. But then a day like yesterday arises; a day when I vacuum and I do laundry and I take the not-quite-itself Christmas Tree down just hours after making my medical appointments and I wonder what is normal? For the next 2 years I will have to have MRIs every 3 months to check if the cancer has come back. It’s been a little over a month since my last follow-up with the oncologist and I’m feeling good so I have moments, days, weeks even when I can sort of forget and let go of the fear and the anxiety and then there are days like yesterday when I face forward, put my security blanket away and hope for the best.

I put the Christmas Tree away and for now that has to be enough.

Surgery #5

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I’m home. Thank you for all of your good thoughts and prayers. I got home around 3pm. This was my first unsatisfying experience with Cooper. I’ll never go back to the surgical center. The people were very nice but they do thing differently at the surgical center. There was no sedation before surgery. I had to walk to the operating room >insert major meltdown here< where they did not have a step stool high enough for me to get on the operating table. In my hysterical state I had to pull myself up on the table and schooch and schooch ’til I was up on the table. I was awake a long time in the operating room with an oxygen mask over my face and no matter how many times I told them I was claustrophobic they just kept putting it back over my face. My surgeries at the hospital were by far better experiences.

Get Up, Stand Up, Don’t Give Up the Fight (Listening to the Universe)

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Somewhere between raindrops and tears lies the seed from which faith grows.

I have a good friend Angel, who I’ve written about here quite a few times over the years. She believes that you have to listen to the universe. She believes that it throws pebbles, then rocks, then boulders until you do listen. I’ve been trying to listen but sometimes I don’t want to hear.

It’s been a rough 16 months with more months of surgery and recovery and doctor visits to go. About two weeks ago on Thursday morning I just fell apart. I made myself physically sick and had to have Chuck stay home with me because I wasn’t okay. In the 16 months since this all began I’ve never had to ask Chuck to stay home with me because I wasn’t able to stay by myself. It was humbling and embarrassing.

Then last Sunday we were unexpectedly in a different church than we normally go to for mass and it was as though the priest was speaking his homily directly to me he said, “Don’t be bitter,” “Don’t be afraid,” “Trust God.” Tonight we were back at the church we normally go to for Sunday evening mass and the priest spoke about how sometimes we have to go through the same things over and over again in order for us to put ourselves completely in God’s hands. He said that giving up is the devil’s end game.

I think anyone who knows me knows that I’m a control freak. I need to be in control and when I’m not I fall apart. I honestly wish that I had the faith to just put myself in God’s hands and know that whatever happens is his will. I’m not that person. I’m not even going to lie to you and say that I pray to give up my worrisome ways. I’m still desperately trying to control the universe, clinging with both hands to the rope. The freak out two Thursdays ago was about me being weary and not wanting more surgery and the upset surrounding the scheduling process and me not being happy with the way things went and the date being changed. I fell apart in spectacular fashion.

Since last Sunday’s homily I’ve been trying to not feel discouraged and I’m still trying to make peace with the scheduling and that I’m having yet another surgery. I’ve had good days and bad days and nights of anxiety in anticipation of this latest surgery. I don’t want to be cut into again. I don’t want to be attached to a two and a half pound wound vac for 9 days. I want for all of this to be over. I’m trying to have faith and I’m trying to take each day as it comes. I’m trying not to be discouraged. Like I said, I’ve had good days and bad days.

Tonight, one of the Super Bowl commercials was an ad for Chrysler titled Halftime in America. Clint Eastwood gave voice to the words, which again I felt were meant just for me to hear, “We find a way through tough times, if we can’t find a way we make one,” “It’s halftime in America and the second half is about to begin.” Okay, point taken Universe. I get it. It’s up to me to get through this. Get off the floor, have faith, keep going. This is just another leg of this journey, which right now is not meant to be over.

I’ll work on having faith in God and my doctors and that for right now I’m where I’m meant to be. I’ll keep my ears and eyes and heart and mind open. I’ll try to learn the lessons I’m meant to and take things as they come.