Unraveling: I am not okay

January 27, 2012 | Author: Carol Anne

I guess I spoke too soon when I decided that medical news and medical drama would not dominate Soapboxville this year. As it turns out portions of the skin graft from December are not healing well and so I am scheduled for my 4th skin graft in early February.

I saw Dr. Matthews on Monday and she decided to move ahead with the skin graft. I told her that I have a bunch of doctor appointments in February and I didn’t want to miss any of those. We settled on a date, which worked for both of us and I went on my way. On Wednesday the phone rang and it was her office telling me my surgery was scheduled for a different date. I said, no it’s scheduled for x date and the scheduler said, no it’s scheduled for y date. Things went back and forth over 2 days and it was revealed that she will be away at a conference on the originally scheduled date.

I tried to move the surgery to a date that allowed me to make it to all of my appointments and attend Chuck’s grandmother’s 90th birthday party but it was not to be. There are no openings for surgery that would not mean moving surgery to March and so I spent today moving all of my February appointments to March and sending an e-mail to Chuck’s uncle to let him know that I will not be at the party.

I am not okay. I’m clinging to sanity with a rapidly fraying rope. I’m exhausted and tired and overwhelmed and depressed and I just want to lie down and sleep for a while. I don’t want to have to worry about surgery or upcoming doctor appointments or being evaluated by the neurosurgeon or the dermatologist. I just want to sleep. I’m too weary to saddle up this time.

I’m really feeling like this will never be over. When I asked why this is happening to me she said the area had been radiated during the treatments. In November when I asked if this would continue happening and where do we go from here if the December surgery wasn’t successful she said she was trying to avoid me having to have a 10-hour surgery by performing the 3-hour surgery in December. Well here were are, the December surgery has areas where the skin graft didn’t take and I’m going in for yet another skin graft. This surgery is minor like the one in March of last year but I’ll be attached to a wound vac for 9 days following surgery. The wound vac is 2 and half pounds. (see it here: http://www.kci1.com/KCI1/activactherapyunit) This means I can’t go anywhere, I can’t do anything. I’ll just be at home attached to a 2 and a half pound unit with yet more skin removed from my left leg and stitched to my head.

I’m not okay. I don’t know how else to say it. I always said I’d be honest in telling my story here and this is where I am right now. I wasn’t up to the surgery in December and I went into it reluctantly. I didn’t feel strong enough or emotionally able to go through surgery again. I was unaware of the seriousness of the surgery. I had no idea that I’d wake up attached to a wound vac and a morphine pump with a drain in my back. I was told I’d be in the hospital 2 or 3 days in actuality I was there for 6 days. This surgery is outpatient. I’ll be home the same day. In fact it won’t even be at the hospital. This time I’m being operated on at the surgical center. But again there are no guarantees that this time is the charm. There are no answers. There is no definite end. There is just more surgery and more uncertainty.

I’m 15 months in now and I don’t know what the universe is trying to teach me. I don’t know why this keeps happening to me. I’m grasping desperately at normal and okay. I’m trying to be strong and stoic and brave. I’m trying to be positive and optimistic but each setback, each bump in the road, each change in schedule unravels my rope just that much more. I’m really close to falling apart and right now I have no idea how I’m going to make it through this latest setback. I’m weary.

Thanks for reading. I love you all.

With much love and great affection,

~ Carol Anne

Posted in Major Surgery & the Road to Recovery, Soul Baring Ramblings | 3 Comments

Here We Go Again (skin graft #4)

January 23, 2012 | Author: Carol Anne

Well my hiatus from personal and medical posts was short lived. I’m scheduled for skin graft #4 next week. Some of my skin graft from December didn’t take so I’m going in for #4.

I asked Dr. Matthews why this happened and she said it’s from the radiation treatments. I asked about vitamins and she said the multivitamin I already take is fine. So, here we go again.

It will be out patient. The surgery is going to be done at the surgical center instead of the hospital. She wants to send me home with the wound vac (http://www.kci1.com/KCI1/vacatstherapysystem) that was on my head while I was in the hospital in December rather than the Snork dressing from last March. I don’t really want the wound vac but she recommends it. From what medical personnel at the hospital said in December it’s the better option, but it’s heavy and cumbersome and uncomfortable. I have a decision to make. If I don’t want the wound vac she won’t put it on but then I’ll be Snorkified, which means a sewn on dressing and perhaps I’ll risk less healing.

A big drawback to this surgery is I’ll have to interrupt my physical therapy just as I’m really making progress. I can tie my scarf on my head again and I’d hate to regress. Of course my head is going to be attached to a wound vac so I guess I won’t be wearing a scarf on my head any time soon.

Posted in Major Surgery & the Road to Recovery, Soul Baring Ramblings | 2 Comments

Riffing on Politics (the one where i inadvertently write a stump speech)

January 21, 2012 | Author: Carol Anne

Hey! Good evening kids. As I’m sure you’ve noticed I’ve been less than inspired as of late. I have to admit, It’s harder to come up with daily posts when I’m not venting. Go figure. I thought it would be easier to not to tell you about MRIs and radiation treatments and surgeries. I was mistaken. Tonight, however I found my muse or perhaps she found me. This afternoon on my brother’s Facebook page there was a spirited political debate. Anyone who knows me knows that I live for spirited debate of any kind especially political debate. My reply flowed from my hands with an ease I haven’t experienced in quite some time. The paragraph below is my reply to this afternoon’s debate and my feelings on political parties and the need to stop defining ourselves and start working toward a better tomorrow. Writer’s Note: Once I finished reading through this I decided it reads like a stump speech.

I staunchly believe that the president & vice president should be of different parties for this very reason. Even a broken clock is right twice a day. The give and take of ideas is often what produces the best results. The problem with both parties is that they spend some much time pandering to their political affiliations they do very little else. Leadership demands making tough decisions and if our *cough* “leaders” *cough* (using that term as loosely as I can) continue to appease the people who bought and sold them nothing will ever get done. Congress will just continue to sit with their arms crossed holding their breath until the middle class turns blue and dies. This country was founded on freedom of speech, freedom of press, freedom of religion, etc. Somewhere along the way we’ve given up the freedom of thought & decision-making. Politicians no longer govern; they cover their asses with the base and beg for money. They make visits to Sunday talk shows and blow hot air. They ALL need to go back to their districts and look at how this nonsense harms the real people in their districts and then they need to get back to D.C. and sit down and LISTEN to one another and decide how to put the country back to work and how to save social security. They need to sit down and brainstorm how to help the poor without creating a lifelong crutch and they need to remember this country was built on the backs of the working class not the 1%. We don’t need political parties we need thinkers and doers with open minds and pure hearts.

Posted in Political Ramblings | 2 Comments

Time Passes … Beauty Remains

January 8, 2012 | Author: Carol Anne

Time and Tide Wait for No Man

— Geoffrey Chaucer

The passing of time remains my favorite subject. It started with the 365 Sunsets project in 2007 and seems to be continuing with my love of blue hour photos. Blue hour is that time in between. It is neither sunrise or sunset. It’s basically twilight, a time  when the world is neither completely dark nor completely light. It’s a magic time full of hope and possibility.

Christmas Tree Reflection @ Blue Hour

Blue Hour on the Feast of the Epiphany

Blue Hour, January 7, 2012

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With Love We Are Healed

January 2, 2012 | Author: Carol Anne

The area where dad pulled in is before the cemetery, I accidentally cropped it out

And now these three remain: faith, hope and love. But the greatest of these is love.
—   Corinthians 13:13

*waves* Hey! Happy New Year and welcome to 2012. I hope you and yours had a lovely New Year. When I decided to stop writing about myself I assumed this first post of 2012 would be about the new and returning TV shows for the winter season. But then a happy confluence of events came together and put me in a more thoughtful headspace.

During this last week I’ve watched quite a few movies. Yesterday I watched An Affair to Remember and Seabiscuit.  The moral of Seabiscuit is even the most broken among us (man and beast) can blossom and succeed and heal with love and encouragement. We can again be whole and grow in the light of love. Seabiscuit’s original owners trained him to lose to other horses so the other horses he lost to would gain confidence. He learned to become a loser until Tom Smith saw greatness in him and loved him into the inherent greatness that was his birthright. In fact, each character in the movie was in some way broken. The last line of the movie is,

“You know, everybody thinks we found this broken-down horse and fixed him, but we didn’t. He fixed us. Every one of us. And I guess in a way we kinda fixed each other too.”

Inspired by these words and refreshed by an afternoon nap we made our way to 6pm mass at St. Mary’s in Williamstown. As it turns out the church is holding a mission this week and so the visiting Redemptorist priest who is giving the mission gave the homily. In what can only be described as serendipity he spoke about how there are those who stay away from Jesus because they fear that he wants them to go through trials and to suffer. He said that if you were to get to know Jesus you would know that he does not want us to suffer or endure trials. This, by the way, is what I believe about God. Father was a wonderful speaker I very much enjoyed listening to him speak. His words brought to mind the story my father tells about finding the church in the fog.

I told this story on the blog in January 2010 but this past October we were lucky enough to have dad in the car with us on a ride down to Cape May. He was able to point out the actual church so we got out and took a few photos, which you see throughout this post.

Dad quit drinking 28 years ago. He struggled for many years after that with the desperate want (need) for a drink. He was a truck driver back then. He’s retired now. Early one morning as he was driving a load of cardboard to Cape May he was in desperate need of a drink and driving through heavy fog on a small two-lane rural highway in southern New Jersey. The fog was quite heavy and so he began to look for a place to pull over until it cleared. Somehow he found a parking lot and pulled in. Sitting in the truck he fell asleep. I don’t want to embellish here so I can’t tell you whether or not dad asked God for help. When he woke up the fog had cleared and his desperate need of a drink had passed. As it turns out the parking lot he’d found was a small Christian church along Rte. 47 in southern New Jersey.

With love we are healed.

I’ll be back later this week with pop culture, politics and a healthy dose of shallowness. Thanks for reading!

Love,

~ Carol Anne

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365 Days of Carol Anne (The Conclusion: A Year End Wrap-Up)

December 31, 2011 | Author: Carol Anne

We are all still here, we are all still standing, and 2012 brings with it the promise of hope.

A Little Background Info

When I was in the 8th grade I fell and sprained my ankle. Come New Year’s Eve at midnight mom had me stand up on my own two feet without the crutches because she didn’t want me to start the new year on the crutches.

What can I say? We’re a superstitious bunch.

Although we are stay-at-home folks on New Year’s Eve I always have us standing up in street clothes as the ball drops in Times Square (no jammies ‘til after midnight). I’ve added my own lil idiosyncrasy to the standing tradition; we have to go outside right after midnight even if just for a moment. Why? I don’t really know. I suppose to me it signifies health and ability.

The 365 Days of Carol Anne Project Comes to a Close

Well kids, it’s day 365 of the 365 Days of Carol Anne project. Today brings this yearlong project to its conclusion. All totaled, I posted 318 photos over 365 days, that means I posted 87.1% out of a possible 100%. Not bad. Not perfect, but not atrocious. I’m both disappointed and proud of this statistic. It’s not perfect. It is however the most committed I’ve ever been to any blog project since Soapboxville began.

I’d be lying to you if I didn’t admit that I’m more than a little relieved that this project is drawing to a close. I’m also a little sad to see it go. It’s not always easy to take an honest look at one’s self but it also gave me purpose, it gave me something I NEEDED to complete each day. It kept me sane, it kept me honest, it offered me a place to open my heart and mind, a place to express myself. I’ll miss it but I’m ready to move on from daily introspection.

Now, on to the hard part …

I started this project as a way to learn to love myself on the outside. In this particular endeavor I failed quite miserably. I’m still rather self-conscious. I’m especially self-conscious of my seriously messed up and missing teeth. This horrifying problem has nothing to do with my cancer. My hideously messed up and missing teeth are from a lifetime of soda drinking and an intense fear of the dentist. I will eventually have to address this problem. I’m a little braver now but there is a mountain of medical bills to be paid before we add dental bills to the ever-growing pile.

On the positive side of the equation I don’t hate the very thought of the sight of myself anymore. Yes, I’m bald. Yes, my teeth are a hot mess. Yes, I’m overweight. At some point during these last 365 days I found compassion for myself. I don’t know if that’s the right word to explain it but I don’t loathe my reflection in the mirror anymore. It’s a start, I guess. When I look at myself now I can say things like, “I like the shape of my eyes” and “I like my smile” and “I have nice skin”. I suppose then this project has not been a total failure. I’m still a work in progress.

A Funny Thing Happened on the Way to the Blog Post

Although this started as a way to learn to love myself on the outside I may have instead learned to love myself on the inside. Before I got sick, before the 4 surgeries, before the countless doctor appointments and medical tests I felt small. I did not have a voice.

At some point in my life I just accepted that I was not as smart, pretty, or popular as others around me. I don’t know why. I don’t know why I’d let anyone make me believe I was less than anyone else, but I did. I’ve spent my life trying to blend into the woodwork, trying not to stick out, trying not to be heard.

I grapple with a fear of success that is much bigger than any fear I harbor of failure. It was not until 2 weeks ago when I started rereading this year’s blogs that I saw myself clearly for the first time in a very long time; perhaps ever. I am not weak. I am not defeated. I am strong and I am human, I’ve stumbled along the way, I’ve fallen apart and put myself back together on several occasions but I did not give up. There were days I wanted to, but with the love and support of family and friends I picked myself up and soldiered on. I’m a survivor. By God’s grace and the power of prayer I am cancer-free as I write this to you.

I AM ALIVE

I AM CANCER-FREE

I AM ON THE ROAD TO RECOVERY

I HAVE FOUND MY VOICE

I AM NOT WEAK

And so my dear ones 2011 and the 365 Days of Carol Anne project draws to a close here. I am putting 2011 square in the win column. Thank you all for accompanying me on this journey. I couldn’t have made it here without each and every one of you. I love you all. Here’s to a healthy, happy, beautiful 2012 for all of us!

With much love and great affection,

~ Carol Anne

Posted in Major Surgery & the Road to Recovery, Soul Baring Ramblings | 6 Comments

Year End Wrap-Up (The Photos)

December 31, 2011 | Author: Carol Anne

This year end wrap-up took a lot longer than I thought it would. I’m my own worst critic and choosing photos I feel proud of was tough. That said, I do however think that I had a good year photography wise. I’m content with the progress I made this year. The following photos are my favorites from the hundreds I took during 2011. I hope you enjoy!

January

Ducks on Frozen Pond

After I got out of the hospital my neurosurgeon said I should take daily walks so on weekends we’d drive to Washington Lake Park and walk to the duck pond. This photo is from what I think must have been our second visit to the pond.

February

Sunset at the Ruins of the Philadelphia Spectrum

Every year me, Chuck and my father attend the circus. We all love it and it’s become a yearly thing. This photo was taken on our way home from this year’s trip to the circus.

March

Atlantic Ocean, Brigantine, NJ

This photo was taken in Brigantine, NJ the Saturday before I went in for my second skin graft. I always go to the ocean when my soul feels low and I feel empty. This trip sured me up for the coming operation that Monday.

April

Cherry Blossoms

Cherry Blossoms

In April the pretty tree in my front yard comes alive with Cherry Blossoms. I spent a lot of time out front taking pictures this spring. The blossoms are only on the tree for a short while before the tree fills with green leaves.

May

Early Evening on the Day the World Didn't End

I took this photo in the parking lot of Deptford Mall on the day the world was supposed to end. I was blown away when I got home and downloaded this day’s photos to my laptop. I had not seen the bird in the shot when I took it. If this doesn’t mean that God wants us to go on living and basking in his grace and glory I don’t know what does.

The sun set that day and another day came to a close. Chuck picked up his new glasses and we all lived on to fight another day. I didn’t know it when I took this picture but late in October I learned that there is no evidence of tumor and that I am right now cancer free. This year I’ve read a lot of blogs written by women who have cancer some are still here to blog and others have since passed on. That night I mused that it’s up to the rest of us to be worthy of standing in Lens Crafters’ parking lot taking photos of the sunset on the day the world didn’t end.

June

Goose at Duck Pond

You just know the goose from the duck pond is looking at me like, “Bitch please get that camera out of my face.”

Gazebo at The Lakes

My father, who took me to many of my radiation treatments loves to sit down the lakes under a tree and feed the squirrels. On this day I tagged along and brought my camera.

July

Backyard Squirrel

I love this photo, it makes me laugh. We feed the birds and the squirrels in our backyard. It started out as something for the cats to look out at but quickly became one of my favorite things. I love that we feed the backyard critters.

August

Almost Full Moon

I took a lot of full moon photos this year. This is one of my favorites.

September

Blue Dragonfly

This September 11th was the 10 year anniversary of the 9/11 tragedies. Normally I love the news and history and current events but I wasn’t sure if I was up to watching countless replays of the Twin Towers falling so we opted to turn off the TV and head to Cape May and the ocean. This photo was taken at the Cape May bird observatory. I very much like this photo. I think it’s one of my best of the year or ever.

October

Philadelphia Skyline

We spent this day visiting the Laurel Hill Cemetery. We were actually meant to go to the zoo that day but 3 whole parking lots were full and so we decided on a less crowded venue. The historic cemetery is beautiful and peaceful. I recommend a walk through on a beautiful day. After leaving the cemetery we drove over to the new South Street bridge so I could take a few photos of the Philadelphia skyline on this gorgeous October day.

Sunset at The Lakes

We were at the American Swedish Museum, which is located in Lakes for a meatball tasting event sponsored by the South Philly Review. The event ended and the winners were announced just at the right time, which allowed me to take a few photos at sunset from the Gazebo, which you see pictured in the June photos. This too is one of my favorites of the year.

November

Philadelphia Skyline at Blue Hour

On the night of the November full moon Chuck drove me to the city so I could take photos of the Philadelphia skyline at the blue hour. This and the photo that follows are my absolute two favorites of the year. They were both taken from the South Street bridge, the location from where I took the daytime skyline photo the month before.

Blue Hour Beauty

In addition to my new obsession with taking photos at the blue hour I was also trying to take as many photos as possible during the month of November because I knew I was scheduled for surgery on December 1.

Late Afternoon at the Duck Pond

Our local duck pond has become my local place of solace. When we can’t make to the ocean I go to the duck pond.

December

Morning in NJ (Blue Hour)

This is the only photo I took during the month of December. I like it but it’s in no way in the same league as many of the others. It’s from the morning blue hour and it’s the first photo I took after my December 1 surgery. I wanted to include it so that I finished out the entire year.

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365 Days of Carol Anne

December 30, 2011 | Author: Carol Anne

Day 364

Today another leg of the journey came to a close, my home care nurse discharged me from her care. The stitches are out and thankfully I am healing well so Chuck will once again be taking care of my wound care. It’s not a big milestone but a milestone nonetheless. I’ll take it!

I’ll be back tomorrow with my year end wrap up.

Love,

~ Carol Anne

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