Ovarian Cancer Awareness: My Journey Continues...

It’s been rainy and overcast here for the past week, and it’s sometimes felt a bit more like late spring than fall. On Friday September 26, I went to the gynecologist for my annual checkup. For the last few years, this process has involved the following of an ovarian cyst also.

That same day Paul Newman (one of my favorite actors) lost his battle with cancer. In the morning, I was back at the gynecologist, trying to figure out once again if a cyst that’s been inside my right ovary for about four years now could be suspicious.

I’ve been living in the medical gray zone known as “watch and wait” for a few years now. My doctor discovered a complex cyst in my ovary, and it’s been followed ever since with ultrasounds (and even an MRI). “Following the cyst” is what doctors do when the cyst doesn’t immediately look like cancer, but needs to be further evaluated with repeated tests like ultrasounds.

I’ve lost track of exactly how many transvaginal ultrasounds I’ve had in the last four years. I’ve had at least six, maybe ten? I was ecstatic about a year ago, when my gynecologist said my CA 125 blood tests looked good and so did my ultrasounds, and we didn’t have to follow me with any more ultrasounds, unless the cyst started bothering me and I had symptoms.

During this last visit, the doctor changed her mind and ordered more tests. So this morning, on a beautiful, bright sunny day I headed off to Northern Dutchess Hospital (NDH) in Rhinebeck for another ultrasound. I’ve really come to dread the tests, so I wasn’t looking forward to it at all. Transvaginal ultrasound can hurt, depending on the skill level of the technician, and it’s invasive and I have to drink a lot of water, too.

It’s hard to judge how much water to drink for a full bladder, needed for the transabdominal portion of the ultrasound. I was supposed to drink two 16 ounce bottles of water, but I didn’t drink that much. The very first time I went for the test, I drank everything they told me, and then I had to sit around and wait. As my bladder got full, it felt so painful! It was agony! So a guy in radiology told me to go in the bathroom and “let a little out.” No easy feat when your bladder is about to explode, to just let a little bit out!

When I was an ultrasound newbie, it was hard. So I’ve learned to only drink what feels comfortable to me, just enough for a full bladder. If I am taken right away, it’s not too bad, the waiting. The only really painful part, in my opinion, is when they roll the ultrasound over your tummy, to take pictures of the ovaries (it’s necessary to have a full bladder for this portion of the sonogram.)

Then there’s that blissful moment of relief when you can finally go to the bathroom after drinking all that water. Then it’s back on the table for part two, the transvaginal portion of the test. A wand is inserted vaginally that gives a very detailed picture of the uterus and ovaries. This is gives a much clearer image than the abdominal ultrasound, but they always do both tests.

I scheduled my ultrasound for a really early time, the first slot at 8 AM, just to get it over with. The hospital has a new Dyson Center for Women, and it was so comfortable and modern. It seemed to me that this is the way medical care should be for women. Other times I’ve had the ultrasounds, it was done sometimes by a man, in a hot cramped room where I had to go down the hall to use the bathroom, then come back to the room to finish the test. It’s not necessarily a bad thing that a man does the test, it’s just that it feels so personal and invasive, I like it so much better when a woman does the transvaginal ultrasounds.

NDH has created this really nice, professional setting where women can get mammograms and things like pelvic ultrasounds. So my transvaginal ultrasound was still invasive and uncomfortable, but not that bad! I left the hospital with a good feeling. If you are facing something like an ovarian cyst, I encourage you to investigate your options and find a doctor and a hospital you can feel really good about.

It’s really nice to know that such institutions exist. The only shocker today was the bill! I don’t have insurance, so I found out I could see the cashier on the way out and get a discount for paying the hospital right after the test. As a writer, I’ve found it’s always this balancing act, not having things like insurance, wondering how the bills will get paid. I was able to pay, but scratching my head at the very high cost of medical care in our country.

I’ve read about the costs of transvaginal ultrasound, and heard a figure of about $250. I also had transabdominal ultrasound too, but the cost of both tests today was at least a rent payment in the Hudson Valley. That’s really one of the downsides of freelancing, wondering how to meet things like unexpected medical expenses. Last time I had an ultrasound I had insurance; now, I don’t have any.

So that’s been on my mind. And what will the doctor say about the results of this test? Did my cyst grow or change in some way? Is cancer now clearly visible? Will I need more CA 125 tests? (a test that monitors blood protein levels and is a marker for ovarian cancer). Do I need laparoscopy? Will I lose my ovary? Will I need to turn around and have another ultrasound next month, or god forbid, another MRI?

All these thoughts swirled around my head as I drove home from Rhinebeck. That’s life sometimes in the “watch and wait” period. I suppose I could put an end to it all, by asking for surgery to evaluate and biopsy my ovary. But no doctor has ever felt that strongly about me having an operation. They leave it up to me. Saying things look okay in their opinion, but they’re not one hundred percent sure I don’t have cancer.

Actually, it’s really hard to detect ovarian cancer sometimes. The signs and symptoms can be very subtle and are often disregarded, misdiagnosed or overlooked. Ovarian cancer is often diagnosed in the late stages when the prognosis isn’t very good and survival rates are low.

As I chatted with the technician giving me the ultrasound today, I mentioned that September is Ovarian Cancer Awareness month. She said “Oh really? I didn’t know that, I just know about pink ribbons and breast cancer awareness in October.” It occurred to me, if a person working in women’s health at a respected hospital doesn’t know about ovarian cancer awareness, does the average person know much about ovarian cancer?

I think we really need to get the word out about this disease. There are women all over the country being monitored like me, and there are lots of frightened women who have been diagnosed or are experiencing symptoms but don’t know where to turn for information and treatment. We really need to start talking more about ovarian cancer awareness. We also need a specific screening tool for the disease (right now, we just have things like CA 125 tests, manual exams, and transvaginal ultrasound).

It’s really hard to believe that I could have no symptoms and no pain, but still have to go through all these tests and then sweat it out, trying to learn if my cyst might be suspicious. But since ovarian cancer is so subtle, I’m willing to be monitored and glad I’ve found a doctor who will order these tests and watch the cyst for anything abnormal.

I urge you to increase your ovarian cancer awareness. If you’d like to hear more of my story, I’ve written two articles on this subject. Click here to read my personal story of ovarian cancer awareness:
http://www.healthmad.com/Women/My-Journey-to-Ovarian-Cancer-Awareness.282775

Click here to read an earlier story I wrote about my ovarian cyst, and learn the signs and symptoms of ovarian cancer:
http://voices.yahoo.com/ovarian-cancer-awareness-learn-signs-symptoms-573715.html?cat=70

I’ll be writing more articles this fall about ovarian cancer awareness, and how to join the fight for a cure. {**SPRING 2012 Update: 8 years later, still being monitored for ovarian cancer, via "watch and wait"...my last tests showed my right ovarian cyst had not changed since 2006. For more about my journey to ovarian cancer awareness, my book "Soul Tripper: A Journey of Awakening" has a whole chapter devoted to my struggles to get a diagnosis about my ovarian cyst, as well as what I learned through the process. Click on the "Soul Tripper Book" section of this blog for more info}.

Day Job

It’s April here in the Hudson Valley; spring has definitely sprung. Last week I was at Clermont State Historic site, and driving home in the afternoon I noticed how beautiful everything is outside, and those first touches of green. I felt this sad feeling wash over me, because I won’t be outside a lot, enjoying the season.

I accepted a full time office job, starting this week. So after a long period of making my own hours, being creative, and having a lot of freedom to make my own schedule, I took this day job working for a big health care organization. That’s where the jobs were locally, in health care. Jobs in this area have been hard to come by, and in a way, I’m lucky to get hired at a time when so many people are being downsized.

What a week it’s been so far. I had to go into the hospital at the crack of dawn, for orientation and processing, which takes days. Then there’s the probationary, training period. Human Resources and my department is located on one side of the road, in an old nursing home that was shut down by New York State for bad working conditions!

The hospital is on the other side of the street. The orientation in this big institution was really like death to the spirit. I think it represents the worst of our capitalist culture with its focus on big business. Working conditions in the hospital and in the office building were in my opinion, deplorable.

I got locked in a bathroom no bigger than a coffin in the old nursing home building, and the floor was covered with water and urine. I literally couldn’t turn around in that rest room, it was so small and hadn’t been cleaned in how long? The next person to come along happened to open the stuck door, and I got out.

Over in the hospital, we had a lunch break, and when I went in the restroom over there, right by the cafeteria, it smelled so bad I had to walk away. This is the one by the cafeteria! That was it for lunch. I didn’t have any. I just took a walk down the street for some fresh air. There appeared to be no fresh air, in either building. Some old vents circulated dead air all day, til I felt my allergies really start to kick in.

I tried to sit through the indoctrinations, and watched the clock painfully tick by. A lady who had been a nurse gave a presentation on safety for hours. She said: “you’ve all heard the rumors about the hospital right? Tell me what they are.” The new hires around me chimed in saying things like, if you’re sick, don’t come here! I thought that was pretty funny and ironic, the hospital talking about its bad reputation.

But, they’re trying to do better. (I was born in this hospital but don’t remember going there, except for a tonsillectomy!) They are trying to raise millions of dollars, and they’re constantly building and expanding and trying to raise capital. The old parts of the hospital are really crappy. When I got in and saw where I would be, the working conditions, it really broke my heart. It’s soul-killing work.

I should have known. The hospital was so intent on making sure they would get the maximum out of me and that I wouldn’t cost them anything, and I would add to the bottom line. I had to have a physical and get thoroughly checked out to prove I was disease free and fit to work. Then there was an intensive and invasive background check. And in return, they couldn’t even provide a decent working environment for employees. In my opinion, it’s not a fair exchange, what they ask of me, versus what they provide.

I think the first day of this job, was really a changing day for me. I want something better than this. I want a healthy environment. I want to do meaningful work. I want to feel like I make a difference, I’m not just a cog in a money making wheel. I want decent working conditions.

I was looking around me and felt like I didn’t belong, because I questioned the corporate indoctrinations. Everyone else was either dozing or eating or staring into space. Didn’t Kerouac ask: “What do you want out of life?” All of this is just so scary, and depressing, even though this is a nonprofit, it says a lot about big business. Ironically, for all this indoctrination, I get the impression there’s a lot of turnover at the hospital.

The attitude of the new employees and trainers was kind of disturbing. There were lots of nurses. All of them seemed quite jaded. It seems like in the big business of mainstream healthcare in our culture, the human touch is lost. I got the impression that patients were kind of like furniture, to be lifted, moved around, processed and handled. This is a scary realization, what really goes on in the hospital.

I had a car accident a few years back and had to go to the ER at the hospital. It was an awful experience. After living through this orientation and seeing the inner workings of the hospital, I hope I don’t have another accident and have to go to the ER!

The unhealthy environment in the hospital is also quite troubling. Lots of the new hires and one of the trainers were obese. I didn’t see many healthy, fit people. Yet the trainer threw all sorts of different candy to the crowd of employees when someone answered a question correctly. And a big table of junk food like chips, cookies and soda was set up in the back, and people just grazed for hours through the training.

It’s sad and shocking to me how this all went down. Not a lot was disclosed to me, about working conditions and benefits, til I took the position. I’m really interested in health and healing, and living a healthy lifestyle. I’m interested in things like alternative medicine and holistic living. So this was particularly hard for me.

I thought I would juggle my job and my writing, but so far I’ve just come home and slept after these rather grueling, unpleasant days.

The state of job hunting in 2008 and what it’s like to work for a corporate environment, I think it might be detrimental to my well being. Maybe it’s just the county I live in and things are better for employees in other parts of New York State or the rest of the country? So, I’m not sure where this really leaves me.

I took the job because it would allow me to relocate, and I’ve wanted to move for a long time. Since I knew this job was in the works, I’ve been looking at apartments and thinking about moving, and that makes me really happy and excited.

As I’ve been looking around at places to live, I sometimes had this pit in my stomach, because I knew I had to work at this day job I wouldn’t like, in order to pay for the move.

It’s not a creative job, at all. I continue to work on my writing, but I’m not making enough to live on right now. A writing career takes time to build, and it could take a while to get established and become self supporting as a writer. So, I decided to take this new job but the hospital is so awful I don’t think I can continue there. I’m taking a break this week, and looking for something better, while I really step up my efforts to be a self supporting writer.

I love the freelance lifestyle. Writing on weekends or at night is never a problem for me. I love that freedom and flexibility of working for myself. It’s something I’d really miss a lot.

So I ask myself, am I working hard enough on this goal of being a full time writer? I think this experience will be a motivator to try and make a full time go of it as a writer! I want to work harder than I ever have on my writing.

I’ve also been thinking again about a “parallel career.” Work that is also creative and complements my writing, that would support me financially as I am freelance writing. That could be teaching, or maybe graphic design?

Wherever you are I hope you’re enjoying this lovely spring weather, and even if you’re working a day job right now, I hope you’re also writing! I wish everyone a very productive and enjoyable April.

Reality Check

Hello again! I’ve been away from this blog for many months now. I’ll offer this excuse for my absence: I’ve been writing web content, and since I began this blog, I now have fifty articles published online.

I started this blog in June 2007, with the hope of becoming a published writer. Initially, I blogged about my early successes, and I set writing goals for myself each month. The blogging really helped kick start my writing career.

I wanted to have 10 articles published by June 2008, and then I could call myself a writer. It seemed like the ball got rolling pretty fast, and after I realized a dream of having my first article published on the travel web site Bootsnall.com, I discovered Associated Content (AC). I started publishing articles there on a wide variety of topics, like arts and culture, travel, health, opinion/editorial pieces, even some product reviews. Click here to see my full Associated Content Library of articles.

In December 2007, my article titled "Are We Too Diet Obsessed During the Holidays?" was highly rated and was featured on the front page of AC, which was very exciting!

In early 2008, I was contacted by Demand Studios for an assignment, based on an application I filled out in late 2007 at their site. I became a freelance contributor for the Demand Studios web site called eHow. I don’t usually write how-to articles, but it was a fun assignment and I learned a lot, plus Demand Studios and my editor were great to work with and I was very pleased with the paycheck (a great gig!)

2008 rolled around and I realized a few things. I realized that I could call myself a freelance writer. I felt comfortable doing so, after all my hard work the year before. Also, it occurred to me that I had somehow become a web writer, not a magazine writer, as I had planned. How did that happen? I took my first travel writing class and finished an article I intended to send to print publications.

But the process of looking for markets and figuring out which magazine and newspaper editors to query about my article seemed a dizzying, time consuming process. Bootsnall, which I loved and which so inspired me for years, was calling my name and I decided to submit my article to their web site.

After that, I fell in love with writing for web sites. I love that my stories are archived online for years and years, becoming part of a library. At any time, someone could search the web and find one of my articles. Print publications, like newspapers, get tossed away after the current issue. But my online library is constantly there, and I can find new readers. I also love the interactivity of publishing stories online; I enjoy receiving feedback from my readers. Another plus: I can track statistics at sites like AC, to see page views of my published articles.

The downside of being a content provider for websites is the lack of respect I’ve often encountered, both online and offline. When I say I’m a freelance writer, I sometimes get blank stares. I get the question “Oh, you write for local publications?” and when I answer “I write content for websites” I get this look that indicates a total lack of comprehension for what that means.

I think web content writing is kind of a new frontier, and people automatically think of freelance writers as writing articles for print publications, at least that has been my experience. I initially became a writer to write about topics that interested me, for magazines that I loved. I’ve been doing a lot of work as a content producer, but this year I want to break into print.

Another goal of mine is to have 100 articles published on AC by June 2008. Can I do it? I have 39 articles published on AC to date. I think it’s possible, and I’m working hard towards that goal.

Now for a reality check: I don’t make a lot writing for websites. It’s been a constant financial struggle. So I’m very close to taking a job, to supplement my income. I’ll probably do that. I’ll have two incomes, one from this job and the other from my writing.

Some new thoughts and strategies have occurred to me this month. I could work this job, cut back on my web writing and just take some more writing classes, hone my skills and try to break into print. Print will be very low paying, so I’ll have this job to fall back on. I could continue to study copyediting and proofreading and try to build up those businesses, and continue to write articles that are meaningful to me. I’ve talked about studying graphic design, I could also do that. I’m interested in copywriting, so maybe that could support my writing ambitions.

One thing’s for sure. If you want to be a full time freelance writer, it’s more work than you ever imagined. I also feel that freelance writing is one of the lowest paying professions out there. It truly is a struggle, but if you love writing, if it’s in your blood, the rewards are worth it.

I’m probably taking this outside, non-writing job, so I can move to a new area. That will make me happier, and that will fuel my writing. Change is good. I’ve discovered it’s all about staying open to change, going with the flow and staying adaptable to whatever adjustments need to be made.

Keep writing. Above all else, no matter what life throws at you and whatever’s on the horizon, keep writing. If it’s in your heart to write, or you have a creative goal of any kind, never give up on your dreams.

I hope to blog more in 2008. I’ll share my story and my successes and what I’ve learned in hopes of helping others achieve their writing dreams. I hope 2008 is a wonderful and productive year for you and that all your writing (and other) dreams come true!