Secrets of the sea

Listen closely and she will tell you her secrets...

Secrets of mothers and daughters

And fathers and sons


Of lovers






Of solitude




And friends

Of grace

Of wonder

Of paths not yet taken

And a thousand dreams yet to come...


Shhhhhhh....

A Lesson in Gratitude

"At times our own light goes out and is rekindled by a spark from another person. Each of us has to think with deep gratitude of those who have lighted the flame within us."

~ Albert Schweitzer

Last week I found out the extent of the surgery and that for certain it was not cancer. I am incredibly relieved. Some of you know the particulars of the surgery, but suffice to say, the doctor had quite a lot to repair. I have four scars – three small ones and one big one - but when I see them, all I can think of is how grateful I am. Grateful that I was able to have the surgery, grateful to be alive, grateful to have a part of my life back, and grateful for the constant support I have received here, in emails, and via Skype. I know how incredibly lucky I am to have friends like you.

The past three weeks have been trying: surgery, another trip back to the hospital, two visits to the doctor, four rounds of antibiotics, one tropical storm (no electricity for days, but it pales in comparison to what many people lost to the storm), and returning to work, but I think I’ve done well, considering.

So now that’s behind me, it’s on with life. And you know what? It just got a whole lot better.

I woke up!

I'm home now, but still really sore. Thank you for all of your comments, emails and well wishes. I tried to think of all of the places you told me of before surgery, which was a wonderful distraction -- you guys are the best! I'm not sure I actually dreamt of them during surgery, it's all kind of a blur...and judging by how I woke up, I think it's probably good that it remains that way!

As far as the cancer part, the doctor seemed to think (although he can't say for sure until the test results come back in a week or two) that it wasn't cancer and that my chances of having children in the future are "fair." So, fingers crossed, those were the two outcomes I was hoping for. There is still healing left to do, but apart from that, I'm so glad this is over. All of your well wishes worked and I can't thank you enough for your continued support. I couldn't have done it without you!

Making a list

The wait is finally over and Thursday I will be in the hospital. I'm nervous about anesthesia, as anyone would be (and this is where your help comes in), but I'm glad it will be over.

I'm putting together a list of things to dream about, just in case there is room for dreams under anesthesia. I know that you probably go to sleep and don't remember a thing and wake up saying strangely funny things, but you know, just in case.

Tell me, please, about the most beautiful places in the world you have ever seen, the company you had while there, what this time of year (or any time of year) is like in your country.

First, I'll dream about the Christmas Market in Belgium because that's where Zoe is. I think this might be a long-ish dream, so more places are in order. Where should I go next?

Dreams

Dreams swirl in my head and cling to my night clothes, refusing to fade with morning’s light, feigning innocence, feigning unfamiliarity with the morning routine, beckoning me to return to them. As sunlight spills through white curtains, I acquiesce, following them as they lead me to the sea, to the dune flowers, to the sirens’ song carried gently in the wind. I listen as they sing to me of the beauty hidden beneath the sea. Even in the deepest darkest water, they tell me, there is beauty, there are stars. A kitten’s nose presses against mine, nudging me back into morning, and I rise and follow my own path to the sea.

(more on Flickr.)

Here & Now

I don't know anything more now than I did last month, except that surgery will be in August. In the meantime, I'm trying to still my mind (easier said than done) and remember the here and now.

Perspective

First, I would like to thank everyone – those friends who have remained constant over the years and those who I have just met - for your words of support, emails and comments. I thought long and hard before making the last post. I’ve had my share of things go wrong over the past couple of years that I felt that talking about this would be complaining, but life is about the good and the bad and I hope that this blog reflects how hard I’ve tried (and succeeded) to find happiness and joy in spite of all the bad.

I have had a little bit of time to think about everything, to let it all sink in and to try to gain some perspective. I’ve tried considering the odds. For my age group, odds of ovarian cancer are 1 in 100. If you have an ovarian mass, the odds are 1 in 7. I am hoping for the best and trying not to worry as the diagnosis is not certain yet. However, what is certain is that surgery is necessary and imminent, and that really does scare me. I’m also trying to come to terms with the fact that this, when the time comes, will be harder than it should be at best, if it is even still a possibility. That alone is devastating - a wound that is still fresh, raw, and remains at the very pit of my soul.

The coming weeks will provide more answers, maybe some more hope, and I’m certain more tears. But I will get through this, just as I have everything else. So, onward and upward and into the unknown. Thank you to all of those who walk with me through this.

~Joanna

Rhythm, the Big 3-0, and CA-125

The elderly couple walking arm in arm, one steadying the other, slowly, slowly, down the same path each morning as the sun rises. Children waiting, books beside them, clapping, Miss Mary Mack, Mack, Mack, all dressed in black, black, black, with silver buttons, buttons, buttons, all down her back, are interrupted as the school bus sighs mightily and comes to a momentary halt as it ushers them off to school. The bell rings and draw bridge lifts letting ships pass through. I watch the harbor beneath me and the lazy kind of hustle and bustle that is life on a barrier island. Every morning is the same, a rhythm that I’ve come to know and love. And the evening has its own rhythm, too. The man walking the brown speckled Great Dane, the woman in the park feeding the birds, the fisherman at the pier, the vagabond weaving tipsy steps as the shopkeeper turns his sign in the window to closed, please call again. The sound of the crickets chirping at night and the distant roar of the sea, a melody all of its own.

Not too long ago, I was afraid that I would have to leave this tiny town in order to work. Far away to the city, to traffic and smog and billboards and Starbucks and two a.m. traffic jams. How I would miss the sunsets and the salt air and all of the beauty that called me so often to the sea. But things changed and a few months ago I accepted a job (in a completely different field) that would keep me here, a job that I love with people that I now consider family.

I have been thinking about how well things have been lately, how the good has finally started to outweigh the bad, how life is finally turning out how I want it to be. I have been looking toward tomorrow, my 30^th birthday, with mixed emotions - how it seems an entire decade was wasted struggling, pushing past one obstacle after another, but now I’m on the cusp of something new- something good. Things are finally coming together and I can feel life’s rhythm more than ever I could before. This will be the decade that makes up for it all. The decade that I find someone to love. The decade that I have children. The decade that is less about surviving and more about living.

Four days ago that rhythm came to a stop.

It started several months ago. I was sick and landed up in the ER. A ruptured ovarian cyst, they thought. I spent that night in the hospital with an IV of fluids and strong antibiotics and the next morning, they sent me home.

After battling the nightmare that is American health care, last month I was granted a follow up appointment with a doctor, who ordered more tests. Then one more test last Thursday, just to make sure they were seeing what they thought they saw. The same day, they called me and left two messages stating that I need to come in immediately, that they needed to discuss the test results with me, that more tests need to be done and that I need be referred to a specialist. I left work early on Friday to see the doctor.

The first thing the doctor asked me was if I have family to support me. I asked why she was asking me this and she said that I would need support through this…and then she told me that they had found a large mass on my ovary. I asked how big the cyst was. “No, it’s not a cyst, it’s a large mass,” she corrected me. I asked her what the difference was. “A cyst is like a blister. A mass is a growth,” she said. “Like cancer?” I asked. “We need more tests,” she said, avoiding me, “and you need to be seen by a specialist.” “Can I still have children in the future?” I asked. “I don’t know,” she said. Then she said, “I don’t think it’s the bad kind of cancer,” she said. “Are you saying I have cancer?” I asked her. And again, she said “We need more tests.”

By this time, I was irritated. Irritated by the phone call the day before telling me that I needed to come in immediately, and by her telling me that I would need support through this, yet as to what “this” is, all she is willing to offer is vague answers with words implied but not spoken.

“What does ‘I don’t think it’s the bad kind of cancer’ mean? Are you saying that you think I have a form of cancer?” I asked. “Yes, I do,” she said, and a moment later, “you need more tests. You need to be seen by a specialist and laproscopic surgery so that a biopsy can be done.” “It could be nothing, right?” I asked. “No, it's not 'nothing' it’s a large mass, and that’s not good. I don’t think it’s the bad kind of cancer, but I can’t tell you to go home and not worry about it, and I can’t tell you that everything will be all right. It could be something that requires surgery to remove and nothing more, but that mass could be something much, much worse.”

She shut the door after she left the room, but I could still hear her speaking to someone. “Put this on the chair so that she [the other doctor] will see it first thing Monday morning,” and ASAP something and then “Poor girl, she’s only 29.”

The rhythm that I finally called my own is gone and a new one has begun. This morning I watched as my hopes and dreams and everything I thought this coming decade would hold spilled forth in a crimson wave sealed in a vial labeled with my name and CA-125.

And so I remain, in limbo, not knowing the full scale of what’s going on, but knowing that the doctor knows something that I don’t. Knowing she won’t say flat out that it’s cancer, but that she believes that it is. Knowing that no matter what, cancer or not, it’s “something” and not “nothing,” but they can’t tell me just how bad that something is. Not knowing if I will ever be able to have children. And still, the doctor’s voice echoes in my head. “It’s a large mass, and that’s not good. I don’t think it’s the bad kind of cancer, but I can’t tell you to go home and not worry about it, and I can’t tell you that everything will be all right."

Rhythm, the big 3-0, and CA-125.

Wherever you go...

"Wherever you go, go with all your heart."

~ Confucius

Wish

"If I were to wish for anything, I should not wish for wealth and power, but for the passionate sense of the potential, for the eye which, ever young and ardent, sees the possible."

~Soren Kierkegaard

Pieces of a Perfect Day

Salt Water

"The cure for anything is salt water – sweat, tears, or the sea."
—Isak Dinesen

It is times like this that I dream of the sea. Always the sea. Waves lap at my ankles, slap up against my calves, and I am knee deep, waist deep, chin high, fighting the current with every ounce of strength I have left. I go under, each wave pushing me further down into murky water, into fragmented sound and countless unknowns. It is then that I am suddenly awake in my bed, gasping for breath, the taste of the sea still fresh in my mouth. I fight it, always I fight it, but sometimes I wonder why I do not let it take me.

I have been absent from here lately. It has been easier to stay quiet, to spare the unpleasant, to not admit defeat. It is only now that I feel I can finally do so.

The past three years have been a blur of car wrecks, of needles and physical therapy; of picking up the pieces and having them crash down one by one, again and again, da capo al fine; of unrelenting pain that stays with me daily and seeps into my dreams at night. Three years of salt water – of sweat and tears and fighting the sea.

Each day is a new challenge. I now have disabilities that limit the type and duration of work I can perform and the career I went to college to accomplish is no longer an option. I am now doing temp work and exploring other options, but it’s not easy.

It is after the third car wreck that I have come to terms with the fact that this is permanent and degenerative. It is something that I had been told countless times before, but blocked out of my mind because the mere thought of it terrified me. During the last round of physical therapy, they told me again, “This is how it’s always going to be. Your injuries and your pain have been with you so long that you’re not going to get better. Stop trying to fight it, stop trying to make it go away, because it won’t. Find a way to live with it.” I ignored it, shunned pity and carried on. I kept fighting it just as I think anyone would. But slowly I have lost the ability to do many of the things that I once loved, as well as the ability to do many routine tasks with ease (or at all). And there are so many things in life that I have not yet done, so many things that I had to put aside in order to recover (three times over). A career and a family, namely. Accepting all of this has been a process. It’s not something that is cut and dry – there is a ripple effect, a whirl of chaos, of sweat and tears left in the wake.

Still, I believe that some day life will be better, that opportunities will come, and that my dreams of the sea will be as they once were: fishing on a small wooden boat in smooth glassy water with solid land to return to, an endless horizon in front of me, and a sunset to paint my own.