Rock the Silver

Cancer in my pocket

I am as amazed as anyone that this french twist comb works on my fine hair. Melissa at Stone Bridge Hair Accessories demonstrates how to do it. Melissa inspired me to give it a try, but I purchased it from France Luxe because she doesn't sell outside the UK. For extra holding power, you could use spin pins and then add the comb.

But enough with the hair. I couldn't wait to share the epiphany I had this week about the joy of breathing. You'd think I wouldn't need a refresher course in the pleasure of being alive, but as you know, sometimes the bastards grind you down. I already wrote about my silly computer trauma. In the grand scheme of things, it was nothing, yet it still made for a rough week.

Thursday I visited the dermatologist for my annual check-up. My husband is one of the pink people with lots of little glebs and blebs, but I have darker skin and have fared pretty well in the sun wars. But I go every year for the big naked look-see, because I respect cancer. I figure, well, I got it once when I least suspected it, so I should be vigilant about everything.

I saw this particular doctor for the first time last year, and I remember him being amazed I was an ovarian cancer survivor. If you read through my archives, you'll learn I actually had primary peritoneal cancer, which is pretty much the same thing as ovarian. If it's a drive-by, I say ovarian. If I'm sitting next to you on the airplane, I'll tell you everything if you ask nicely. Or maybe I'll just tell you anyway, because I am working on an e-book about my experience, and I'll be posting some excerpts from time to time. Consider yourself warned. My encounter with the dermatologist may or may not make it into the book, but telling this story is a public declaration of my intent. No backing down now.

So, the doctor walked into the room as I sat there naked and draped in a flimsy paper robe, and the first thing he said was, "You're the ovarian cancer survivor."

Me: Yes, 13 years next month.

Him: Wow. You're lucky.

Me: I know.

Him: They must have caught it early.

Me: No, it was advanced. Stage 3.

Him: You're really really lucky.

Me: Believe me, I know.

But sometimes I have to be reminded! He asked me a lot of questions about my surgery and treatment and was surprised they had Taxol "back then." I said absolutely, I had a chance encounter at a golf course of all places with a researcher who helped develop the drug, and he said I was the poster girl for Taxol. It was approved for use in 1992, so by the time I needed it in 1999, they had worked out the optimum cycle.

Following the surgery to remove as much cancer as possible, I had a cocktail of Benadryl, Taxol and Carboplatin infused every 21 days for six months. I've been fine ever since. Benadryl is an anti-allergan, and I am pleased to let you know it was one hell of a rush when shot directly into your vein. The rush didn't last long, but I looked forward to it just the same.

Anyway, I passed the dermo exam. Another stroke of good fortune. No bad moles. I have mild rosacea on my face, you almost can't see it, but he gave me the name of a cosmetic dermatologist who can laser it off if I want. I'm thinking about it.

It was a good visit, and I'd go back again right this minute just to hear him say how lucky I am. Sometimes I imagine that I carry around cancer in my pocket like an emergency dollar bill. And sometimes I just have to reach in my pocket and fish it out to remind me that every minute of every day is a gift. I wish I had learned all this important stuff in some other way, but I ignored all the little sticks. It was the big stick that got my attention.

For those of you who are better with sticks, I think the thing to remember is that whatever we're doing, wherever we've been and wherever we're going, no matter how bad it gets, we're lucky. We're really, really lucky.

 

Gray hair -- no minimum age requirement

If you haven't visited Diana Jewell's new Going Gray Looking Great Facebook site, by all means -- go! One almost gets the feeling there's a gray hair revolution. Women in various stages of gray are posting their pictures, and there are some stunningly beautiful women rocking the silver hair. Check out Mia, Robin, Claire and Claire again!

Hair stylists and well-meaning friends like to say it's OK to go gray, but wait until you're 65 or 70 or whatever is in their heads as the definition of old. When I saw these silver-haired beauties in their 30s, 40s and 50s on GGLG, I was reminded of the George Bernard Shaw quote, "Youth is wasted on the young." There's no such thing as a minimum age requirement for gray hair. You don't have to save it for the end.

Much too often women view gray hair as the line of demarcation for aging. When you mostly see elderly women with gray hair, well, that's what you think. But when you see women of all ages sporting stylish gray hair, you begin to see the line is blurring. Gray is neither young nor old -- it's just a color like any other.

A lot of the women engaging with GGLG are in the awkward stage when you stop dyeing your hair and start letting the the gray grow in. Talk about a line of demarcation! But once you're on this path, you just have to hang tough and roll with it. And there are some happy surprises along the way.

I remember when my hair was coming back in after chemotherapy 13 years ago. I made a decision to remove my bandanas and expose my bald head so everyone at work could see the day-to-day progress. What an eye-opening experience -- taking off the head covering was an invitation to talk to me, and I connected with people in ways I never imagined.

After my hair grew in, I decided to dye it, and that lasted a few years. But when I made the decision to quite dyeing it, it was a lot like when I had cancer -- this time I removed my head covering of dyed hair, and people were curious about what was going on. Going through this difficult transition in public somehow makes you more approachable. I made a lot of new friends as my hair transitioned to silver.

I used to say I felt like I was leading a parade of one, but I now believe the tide has turned. I like it.

We are all time travelers on this train

Photo by Paco CT's photostream

I have always adored books about time travel. Stephen King's 11/22/63 is no exception. It's not a horror novel but a well-told told story about a guy who goes back in time to try and stop the assassination of President Kennedy. It's funny, nostalgic, suspenseful, thought-provoking and on top of that -- a great love story! I could not put it down.

But this is not a book review. It's the reveal of an ah-ha moment about life imitating art. Time travel is an interesting concept. Most discussions about time travel eventually get to the paradox of what would happen if you went back in time and killed your own grandmother. Then you wouldn't be born, but if you hadn't been born, you wouldn't be traveling into the past, would you?

The King book is about what happens when you mess with the chain of events and all the causal links. For example, you might save a man from being seriously injured in a horrible car accident, but then he might get killed later because he was able-bodied and sent to fight in a war. Tinkering with the past could have unintended consequences.

I wasn't thinking about time travel or Stephen King as we were watching the election news in Charleston, SC. We lived there five years and absolutely loved it. They showed some images of the city, and I said, "If only we hadn't left." My husband said, "You might be dead."

Because the chain of events were such that I was diagnosed with cancer shortly after we moved to a new city. It was almost as if the right doctor who knew exactly how to treat my cancer was standing by waiting for me to get there. I got to live, and well, you can't argue with those results. What if we had stayed in Charleston? Was anyone there going to cure me?

Suddenly, the real-life applications of fictional time travel became clear to me. All these things that happened in your life had to happen in order for you to get here. Even if you could go back and undo the damage, undo the stupid decisions and all the other bad stuff that haunts you, you might change just enough to end up in far worse shape than you are now.

Thinking about life as time travel helped me move on. When I think about Charleston now, my memories are filled with nostalgia not regret. Sometimes things happen for no apparent rhyme or reason, and sometimes we have a hand in it, but eventually what happens, happens, and it becomes our past. The past is an accumulation of causal links in our own journey through time.

We are all time travelers on this train, and I find that comforting. And liberating. It helps me let go of the why's and the what if's. The Stephen King book speculates that traveling through time and changing the past can produce disastrous results. I'm speculating that traveling through our memories of time and regretting the past is pretty much the same gig.

Carpe diem!

The year of never giving up on your dreams

Donna, 1999

Happy New Year everyone! I'm excited about 2012, but then I'm still sort of shocked and delighted just to be here. 2012 marks 13 years since I was diagnosed with advanced stage ovarian-like cancer. What I had is actually called primary peritoneal cancer. Tumors form in the lining of the abdomen instead of the ovaries, but it's pretty much the same gig and is treated as such.

Someone actually said to me, "I thought everyone died with that ..."  I said, "Well, apparently not everyone." The five-year survival rate for my prognosis is about 25 percent. Some people live years with active disease, but I have been healthy and cancer-free since my initial treatment.

You can check out the cancer category in the blog archives if you want to read more about the diagnosis and treatment, but that's not why I'm here chatting with you today. It's a new year, and I wanted to offer some perspective on never giving up on your dreams.

At the end of 1999, I was weak from a year's worth of surgery and chemo but optimistic the cancer was gone. I began 2000 thinking about what's next. I was stuck in a job that paid reasonably well and didn't demand a lot. Everybody's dream, right? It was probably a job I could have kept for life. It was a good company, great people and they liked me well enough, but there were few opportunities to move up. The job I aspired to was already taken, and I'm pretty sure that person was planning to be there for the duration.

The thing is, I'm not wired to be happy unless I am challenged. I dodged cancer, but I wasn't sure I could escape being bored to death. I'd had a good run at it but was no longer satisfied professionally, and nothing I tried made a difference. I finally accepted this was a nut I could not crack, and it was time to move on. I remember telling a friend I was going to hunt for a job, and she said now she knew for sure that I was crazy.

You have an easy job that pays well, you live in a nice house with an easy commute, you just survived a lethal form of cancer and you want to do what?

I'm also not wired to fly without a net, so I was exceedingly careful to ensure I didn't do anything exceedingly stupid. I wasn't looking for the big bucks sexy job that looked to good to be true. I wasn't about to blow our solvency simply because I had the itch. It took me another five years to find the right opportunity and make the move, but I did it. I did what I set out to do.

You could say it was risky, but it was a calculated risk, and I have been rewarded. We moved across the country and discovered a new life. I found the challenges I wanted (holy crappola did I find them), my husband is enjoying retirement, we're healthy and happy and excited to still believe in limitless possibilities. I wasn't even sure I'd be alive. How's that for perspective?

I started to write, here's to achieving your dreams in 2012. But then I thought, it took me five years to find a new job! I've been writing this blog for more than three years, and it's nowhere near what it ought to be. I haven't given up on that, either. These things don't necesssarily happen on our timetable. I think this is what I meant to say:

Here's to 2012 and to never giving up on your dreams!

The passing of a young ovarian cancer survivor

Sarah Sadtler Feather died last week. Sarah's blog The Carcinista was about her experience with ovarian cancer.

I didn't know her and had not been a reader for long. I think somebody commented on this blog, and I went to that blog, and I saw a link there that led me to The Carcinista. I'm an ovarian cancer survivor, so I hopped over there to see what she was all about.

It's just heartbreaking. I can't get her off of my mind. Sarah was a talented and entertaining writer who told it straight up. My favorite line was something she wrote after she decided to stop treatment. Her body was ravaged, and she was tired and done.

"So I’ll fight while the fighting is good. And then I’m going to have a chocolate milkshake and a really killer nap."

Sarah was also young, in her 30s, with a young family. In some ways, that makes it seem even more unfair, but I try not to differentiate between those who die young and those who die with more miles on the odometer. I mean, would you console a grieving family member with these words, "Well, she was 60 ..."

That has been my ax to grind with ovarian cancer all along. People rally behind breast cancer. It's young, it's hip, it's perky. Ovarian cancer is an old woman's disease. It's like, sorry, but you were washed up anyway. Only when it strikes the young does anybody start to care. But if that's what it takes, I'll take it! Sarah and other young ovarian cancer survivors have made a difference, and I'm grateful.

The disease used to be practically unmentionable. I don't know if it's because it seems so intimate and female (the word ovaries can clear a room) or if it's fear the disease is spread by word of mouth. Ovarian cancer is not as common as breast cancer, but it is far more lethal. Most people consider it a death sentence. The following celebrities died of ovarian cancer:

• Gilda Radner
• Madeline Kahn
• Jessica Tandy
• Loretta Young
• Shari Lewis
• Sandy Dennis
• Coretta Scott King
• Laura Nyro
• Liz Tilberis

Most of our spokewomen are dead, but never forget there are long-term survivors! Among the celebrity survivors is Kathy Bates, who has done her part to heighten awareness. I believe Kathy was diagnosed at Stage 1, which is the earliest stage and statistically the most survivable. The Carcinista was Stage 3C, which is the same diagnosis I had 12 years ago. The Carcinista lived about five years with the disease. My death sentence was a false alarm.

I still get scared. I still fear its return. But whether it's gone for good or comes back to bite me is out of my control, so I practice letting go of the fear. Anybody can do this. Cancer experience not required. Anybody can practice letting go of the fear that keeps them from becoming all they were intended to be. Just listen to that reasoned inner voice (not the crazy one) that says try this or do that. What's the worst thing that can happen?

You can even mix plaids and stripes if you want to!

In search of a stylish hat

If only it weren't for my occipital lobe. I didn't even know it was there until I lost my hair during chemotherapy 12 years ago, and then all of the sudden my husband and I noticed this pronounced hump, practically a shelf, on the back of my head. It's like, what is that? Does everybody have one? We called it my brain pack.

Although it does make me well-suited for short hair, which I no longer have, and now I'm wondering why the hell not, it doesn't help with hats. It may appear as though I have a lovely little head, but it's actually gynormous. I wear a 7 1/2 in men's sizes, which is what they usually list as extra large. For men. When I was in the Army many many moons ago, I wore the biggest hat they made for women, and it was tight. Squeezing, squeezing, squeezing the brain, and we can't have that.

I want a hat. A cute weekend hat for when I'm tooling around. Like Katie Holmes in her fedora. Or maybe something like this. A fashionable chapeau that disguises morning hair and makes me feel sassy. Maybe even a panama hat or a beret? I have no idea how any of these would look on me, because none of the hats at the store fit my beefy noggin.

Even online, none of the women's hats would fit me. J. Crew has this adorable hat for stylish pinheads. I would hesitate to order online, anyway, because I don't really know how I look in hats. I do like my Tilley for outdoor activities, but that isn't the look I'm going for. I want a city hat.

At least I think I do. Hats are kind of a statement, and I'm not sure if I can pull it off. Most of the pictures I've seen of women hearing hats are of adorable young style icons, church ladies and Queen Elizabeth wannabes (not that she doesn't look adorable). I'm thinking hats are the perfect accessory for women our age and ought to look spectacular with gray hair, but I also think it will take some work to find the right look. I don't want to look as though I'm trying too hard to be hip or end up as one of the stereotypical crazy old ladies wearing a goofy hat.

May I ask, do you wear hats?

Here for the party

I've been kind of a slacker in terms of blog posts. But I've been the opposite of slacker at work, and therein lies the problem. I've got nothing left. Nothing.

On the bright side, March is buzzing by without all the typical drama and trauma. I usually get in kind of a funk about this time, but the funk came and went earlier this year, so now it's a downhill slide into summer. We've had unseasonably warm weather, which makes me happy. Shortens the cycle of my Seasonal Asshole Disorder (SAD). 

This week is my cancer-anniversary. It's odd -- you would think I'd be light-hearted about commemorating this experience since I got to live, but it often puts me in a foul mood. I think my reaction is a mini-version of post-tramautic stress. Winston Churchill said if you're going through hell, just keep going. That's pretty much what you do after you've been diagnosed with cancer and undergo treatment, but then afterward, you find yourself in this new place on the other side of hell, where there's no furniture or towels or soap and Target is closed.

The post-cancer life of a survivor is like a moving-in experience. Lots of boxes to sift through. No place to put anything. It's funny how the old stuff never looks right in the new place. A good opportunity to get rid of junk you don't need anymore. A good opportunity to go shopping, get a few new things, mix it all up and and see what fits. Sometimes it takes years before everything lands in the right place.

It has been 12 years since I was diagnosed with a variation of advanced stage ovarian cancer. A deadly diagnosis, but I was lucky. No signs of disease since my initial treatment. I keep learning, and surviving gets easier all the time. This whole angst over gray hair and aging -- maybe it's different for me because I am just so damn glad to be here for the party.

I'm proud to say I didn't have my little baby meltdown this year. In fact, I feel like something has shifted. It's like that day years after you've moved in, and you finally find the right place to hang the big mirror. It looks like it belonged there all this time, and the new place feels like home at last. Progress!

Possibly unexpectedly Jewish

I think I might be Jewish.

My father's parents came to America from the Austro-Hungarian empire in the early 1900s. My grandfather worked the copper mines in the Upper Peninsula of Michigan. That's where my dad was born. Eventually they made it to Cleveland and did something there. The census report says "miner." Lots of unknowns in this story, but that is the pattern of my family.

My mother's parents were born in the United States, but their parents came to America from what was then called Bohemia but I'm pretty sure is now Czechoslovakia. That whole region gets confusing when you start to look at the old maps. Her family eventually moved to Cleveland as well. 

Mom and Dad were both raised Catholic. They met in a bar in Cleveland when my father was on leave from the Army during World War II and were married just a few weeks later. As the story goes, Bill came home from the war with a piece of fancy pottery he found/stole somewhere along the way and sold it to a museum. They took the cash and went to California to start a new life.

My sister and I were raised Catholic, but with me, it never stuck. I hated church and Saturday catechism from day one. My mom was funny. She felt she had a duty to raise us Catholic to a point. She saw to it that we were confirmed -- which was what age? 14? 15? It's technically when you're an adult in the eyes of the church. Once confirmed, I quit. Check the box, Mom, I'm done here. She was fine with it.

I haven't been to church since. I don't subscribe to a religion. A former boyfriend once broke up with me because he said and I quote: "I am looking for a woman who is mentally and spiritually strong. Although you are mentally strong, your spiritual attributes are nil."

I've since developed a spiritual side, but it's nothing recognizable. I'm open-minded and appreciate other people's religious beliefs. But I always thought if I had to pick one, I'd pick Judaism. Many of my friends in school were Jewish, I was fascinated with the culture and read a lot of Jewish writers. I could see myself hanging out with Philip Roth and Erica Jong.

But it never occured to me I might actually be Jewish until I got cancer at age 43. I had primary peritoneal cancer, which is a variation of ovarian cancer. I was diagnosed several years after my ovaries were removed during a routine hysterectomy. Having your ovaries removed reduces your chances of getting ovarian cancer by something like 98%. To be in that 2% who get it anyway is rare and often associated with having the BRCA gene mutation. And that gene mutation is often associated with being of Ashkenazi Jewish descent.

If my family was Jewish not Catholic, and they came from Eastern Europe, there's a pretty good chance I could be in that group. Former U.S. Secretary of State Madeleine Albright was born in Czechoslovakia, raised Catholic and did not find out until later in life that her parents were Jewish.

There is also a chance the cancer was just a sporadic thing. No other women in the family had it that I know of. But my mom's sister died of "stomach cancer." That is what my mother said, anyway, and in her family "stomach" could be the code word for "ovary." I have a relative somewhere who doesn't know her dad isn't her real dad, and my mother took the truth to her grave.

I became curious about the Jewish connection after my cancer diagnosis and got into genealogy for awhile. Not much turned up. Nobody left to ask. I could get the gene test, but I don't have kids, so I'm thinking, why bother? It's not like I'm passing it along to anyone. The gene pool stops here!

But the intrigue ... a big discovery in mid-life that changes who you thought you were. Do I need to be Jewish? Of course not, especially since we know my spiritual attributes are so weak to begin with. But there's something else at stake. This is a family tree ripe with mystery, and I'd like to know the truth.

Ovarian cancer diagnosis: Part II

Doctors were thinking scar tissue was causing me abdominal pain, but it turned out to be ovarian cancer (even though I had no ovaries). The doctor performing my laparoscopy was going to zap through the stuck-together tissue but didn’t see adhesions after all. He was about to finish up and get out of there when he saw a suspicious patch of something. Cancer! It even looks funny.

The doctor, a general surgeon, said it blew him away completely, because cancer was the last thing he expected to see. Take a number, pal. He didn’t touch it, though. He called a Gynecological Oncologist from the operating room and asked him what to do. The Gyn/Onc instructed him on how to take a frozen section biopsy without disturbing anything, and then said, “Close her up and send her to me.” Their collaboration helped save my life.

The waiting is the hardest part

I had to wait several weeks to see the Gyn/Onc. First, they said my diagnosis was “Cancer of Unknown Primary.” When cancer shows up in the abdomen, it’s usually because it has metastasized to that spot from somewhere else. I shuffled off for a mammogram and chest x-ray, and both were normal. They did a blood test called a CA-125. Mine was in the hundreds, and 30 is the max for normal. An elevated CA-125 is a sign of ovarian cancer. Doctors typically won't use it as a diagnostic tool because it has a high false positive rate, but I sure wish they'd done one when I was going through all that crap in Charleston!

It wasn't looking like breast cancer, so they started calling it “Cancer of the Omentum.” I learned later that the omentum is a fatty apron that covers the intestines. But interestingly enough, you can live just fine with naked intestines. Now they call it "Primary Peritoneal Cancer" or PPC.

Although PPC is a distinct disease, ovarian and peritoneal cells have the same embryonic origin. The word primary before peritoneal means that is where it started -- in the peritoneum. The two cancers are virtually identical and are treated the same.

I didn't know all that then. I still hadn’t seen the Gyn/Onc and the waiting was driving me nuts. At this point in my life, I still thought I was driving this train, so in my usual type-A fashion, I contacted the general surgeon and wanted to know why exactly I was waiting on this loser when apparently cancer was ravaging my body at warp speed. He said two weeks will not make a difference, and this guy is worth waiting for. I reluctantly backed off and uncharacteristically decided to trust him. Trust! Something new and different!

Here to see the man

Finally, I get to see The Man. I’ve got my tough don't fuck with me face on, and he’s a cute little fella with a bow-tie! He scanned my records and then looked me straight in the eye and said in the kindest voice imaginable, “Donna, how in the world did you get yourself into this mess?” I broke down and cried.

Normally, I would have been analyzing his comments, like what did he mean by that? I didn’t do this to myself! Normally, I’d be writing letters to the medical board trying to get his license taken away. But these were not normal times, and somewhow it was exactly the right thing to say. Pretty soon we were mapping my survival strategy.

The surgery would be April 16 -- more than a month after they found it. This was the big one, Elizabeth. The incision is what they call “pubis to sternum.” You figure it out. The operation is called cytoreductive or debulking surgery -- the idea is to remove as much disease as possible. They also remove the omentum, the appendix and any miscellaneous female parts you may have hanging around. Being optimally debulked means they removed all visible signs of cancer. Sometimes they can’t optimally debulk because there are too many tumors or they are too close to the bowel or some yahoo wthout proper training is doing the surgery. The surgery would take several hours, and I'd be the hospital three to five days.

I won’t go into the details about the hospital stay -- it was charming, as you can imagine. I will say that they didn’t let me eat or drink for several days. I asked for a drink, and they gave me a stick with a little sponge on the end that had been dipped in water. Yippee.

How bad is it, doc?

The results were that I had Stage 3, Grade 3 cancer. There are four stages. Stages 3 and 4 are advanced. In typical ovarian cancer, Stage 1 means it is confined to the ovaries, Stage 2 means it has spread beyond the ovaries into the peritoneum, Stage 3 means it has spread to the upper abdomen and Stage 4 means it has spread to the lungs, lymph nodes or other organs. Since I had no ovaries, I was automatically at least Stage 2. They found two tumors on my omentum and one in my upper abdomen, so that made it Stage 3. Oh, and guess what? My appendix was positive for cancer as well! 

The grade describes roughly how aggressive the tumor is. Grade 1 is the least aggressive, Grade 3 is the most aggressive. Grade 3 is sometimes called undifferentiated or poorly differentiated. That means it doesn’t look at all like a normal cell. Even though Grade 3 is the worst, it sometimes responds best to chemotherapy because it looks so alien. Chemo would be my new best friend.

Statistics suggested I had about a 25% chance of living five years, but my doctor never discussed life expectancy. We just focused on the road ahead. He was able to remove all visible signs of cancer, so I had optimal debulking, which is the gold standard if you are hoping for long-term survival. He then described the treatment.

Chemo consisted of a cocktail of Taxol and Carboplatin infused every 21 days for about six months. After the chemo was completed, I would have another operation (same incision) called “Second-Look Surgery.” The second-look is to biopsy what’s left and see if there is microscopic cancer remaining. The idea being that if you still had cancer, you'd continue the treatment, but if the biopsies are normal, you can spare your body the extra wear and tear.

A visitor

I made it through the whole thing and had the Second-Look Surgery in October 1999. I believe there were 36 biopsies. I remember being in my hospital bed, waiting and wondering about the results. A woman intern came by. She said she was assisting my doctor and just wanted to see how I was doing. We ended up talking for an hour, I think. Much of this is blurry, but I remember her telling me about her family and her hopes to be a physician in a rural area where she could make a difference. We talked about me, but I honestly don't remember what I said. I remember our talk as being deeply personal and somehow inspirational. My husband remembers her, but I don't remember the three of us being in the same room. 

Anyway, she said she'd get the biopsies for me. She was gone awhile and brought back a big computer printout listing each of the biopsies with the results next to it, and it read, negative, negative, negative, negative, negative, negative ... all 36 of them NEGATIVE. We laughed and cried, and it was one of the best moments of my life. I have been fine ever since.

I couldn't recall my visitor's name, but I mentioned to my nurse at a follow-up visit how much I appreciated the woman intern who was working with the doctor when I was in the hospital.

She said, "What woman? What intern? He doesn't have an intern."

Oh, one more thing. Although my pains just prior to diagnosis were most likely related to the cancer, we now believe The Thing On My Right (TTOMR) was a separate deal -- a hip flexor injury from racewalking that got better every time I had surgery because I was not racewalking. The doctor said who knows what would have happened if I had not had that nagging, recurring pain.

Ovarian cancer diagnosis: Part I

This post is longer than usual, but I promised to help demystify ovarian cancer, and it takes time to tell this story. I'm kind of nervous about telling it. I've talked a good bit about my recovery, but I've never documented the diagnosis. So much drama that I'd rather forget, but my heart is telling me that sharing it with you is the right thing to do. I don't know why it's the right thing to do, but I assume that will be revealed to me in unexpected ways. I'll tell it in two parts and then go back to writing about fun stuff for awhile. This will soon be buried in the blog archives, so you won't even know it was here.

I'll start by answering the first question most people ask when they find out I am an ovarian cancer survivor of nearly 12 years: How did they find it?

If you’re squeamish about girlish body parts and feminine functions, please leave now. Nothing to see here. Move along. The rest of you can stay. Regrettably, I have to talk about menstrual periods and bloody nipple discharge. Just for a minute, then we’ll get to the good stuff. I'll be sharing some symptoms and medical details that may or may not be related to cancer, but they are part of my journey nonetheless.

The Thing On My Right

We lived in Egypt from 1989 to 1991, during which time I developed pain in my lower right abdomen. We called it, “The Thing On My Right.”  TTOMR. I went to the embassy medical clinic, but they found nothing. They sent me to Germany for a laparoscopy, which also revealed nothing. The pain continued to nag at me from time to time, but it didn't interfere with my life in any major way. I wanted it gone, but I never worried that something was seriously wrong.

When we returned to the states, I went to a gynecologist, who did another laparoscopy and found a small tumor on my fallopian tube. I had a tubal ligation in my 20s (I really, really didn’t want children). He said it looked like some sort of scar tissue associated with the tubal ligation, but I would still require surgery to remove this suspicious mass. Had the surgery to remove the mass, which turned about to be nothing. That was the first time I was scared, and I was delighted with the good news. TTOMR went away for a couple of years.

Fast forward to 1995. TTOMR was back. I was 40 years old and after a lifetime of excruciatingly painful menstrual periods, I found a gynecologist who agreed that a hysterectomy might be in my future. He did a bunch of tests to see if there was a cause for this pain. I had a colonoscopy, which had to be stopped mid-procedure because they couldn’t get the scope past a “kink” in my colon, and I was like, screaming? Later they said that was normal.

The only thing revealed through all these tests was a misshapen uterus. The doctor said it was most likely not the cause of my pain, but I probably wouldn’t have been able to have kids anyway. He said the ovaries were probably the culprit, so let’s just get rid of them when we do the hysterectomy. Yay!

Breast Cancer Scare

All the testing took months. In the meantime, I had a cyst in one of my breasts that he was “watching.” It was getting bigger, so he sent me to a surgeon, who did a little office procedure to drain the fluid. The fluid turned out to be blood, which makes it more likely to be associated with breast cancer, so I had to have the cyst removed. All was well. Benign fibrocystic disease.

A few months later, I noticed blood leaking out of my left nipple. Back to the doctor. Surgery to remove the ducts. All was well. Benign fibrocystic disease.

Then, I don’t know, another month or so later, the same thing happened with my right nipple. OK, now you've got my attention! I was officially scared. I made an appointment with a different doctor at a regional cancer center. I explained that I didn’t have cancer, but I was concerned about the pattern of symptoms and wanted to know what else I should be doing to be sure nothing worse was going on. He said it was just benign fibrocystic disease. Surgery to remove the ducts.

Finally, the bloody boobs are taken are of, and it’s time for the hysterectomy. The procedure went great, nothing to worry about, I’m golden. They put me on hormones, and everything was dandy. No more periods, no more pain.

Appendicitis?

Except about a year after the hysterectomy, I started having sharp pains in my lower right abdomen. TTOMR. One day, I remember coming home from golf -- unzipped my pants to relieve the pressure and just plopped down on the front lawn from pain. Being prone seemed to be the only thing that helped. Another day, my husband took me to the emergency room. Surely this was appendicitis.

They admitted me for observation but said it did not seem to be appendicitis. Finally, the pain subsided, but the doctor said, “I felt something. I don’t know what, but if this ever happens again, have them call me. You should have a CT scan.” 

I was in the middle of moving from Charleston, SC to Columbia, SC -- a move known at our house as "The Big Mistake." From a career and quality-of-life perspective the description fit, but medically speaking, the move probably saved my life. Anyway, I made a point to have the CT scan before I left Charleston. I called for the results, which he said were normal. I said, “What about my appendix?” He said it didn’t show up on the scan, which sometimes happens. No worries.

Eliminating possibilities

It is now 1999. Living the dream in Columbia. TTOMR was getting worse but not unbearable. Bloating. Periodic gut-wrenching gas pains in the mornings. A pulling sensation when I walked or played golf. Frequent urination. The possibility of cancer never crossed my mind. I thought something mechanical was wrong, maybe that kink in the colon or some leftover parasite from Egypt gnawing away at my innards. Except for pain, I felt great. 

By this time, I was documenting everything. I found a wonderful family practice physician who didn’t think I was nuts. He sent me to a gastro guy, who said it wasn’t gastro-related. Then I went to a general surgeon, who said it was probably adhesions -- scar tissue -- from the hysterectomy. Adhesions kind of glue everything together, so he’d go in through our friend laparoscopy to lysis the adhesions. 

March 11, 1999. My sister’s birthday, but that was no big deal, because this was just a quick little Friday morning outpatient procedure. I’d be back at work Monday. Except I woke up in a room, and I knew something was wrong. I saw my husband, and I asked, “What the hell is going on here?” 

You didn't have adhesions.

OK.

You have cancer.

Cancer! What kind?

Ovarian.

That's impossible! I don't have any ovaries!

I know. It’s in something called the omentum, but it’s the same thing.

As ovarian cancer?

Yes.

I told you those ovaries were bad fucking news.

Coming soon! Part II: What's an omentum? How bad is this really? What was up with the Thing On My Right? And hey, didn't I tell you it was my appendix?