What was I doing a year ago?

While ovarian cancer was already growing, I was working, hiking, enjoying the wild rhododendrons and participating in the Woodstock staff talent show.

While I was enjoying a Himalayan spring, cancer was “blooming” in my abdomen.

Because of how silently ovarian cancer grows and how non-specific its signs and symptoms are, most women are not diagnosed until stage three or four – when it has already spread. At that point, life expectancy is already compromised, with most ovarian cancer patients dying within a year or two; of those who go into remission, 80% have a recurrence. I don’t say this to point out the already obvious fact that “I might, in fact, have to die”, but to urge all women, and the men who love them, to take seriously the early signs of ovarian cancer that are often shrugged off, ignored, or misdiagnosed.

When I did take my symptoms seriously, I saw a gynecologist twice and had two normal sonograms that failed to notice the cancer.

That’s why it’s important to put modesty and embarrassment aside and speak plainly about the early symptoms of ovarian cancer. I have since seen symptoms such as gas (flatulence) or diarrhea, fatigue, unexplained weight loss, decreased appetite and bloating listed. Many of these can be attributed to other, more common causes. Who isn’t tired these days when being the most overworked/short of sleep among your peers is the new one-upmanship? I can honestly say that I’ve battled flatulence for years. ask Dave. on second thought – no, don’t… It’s not unusual and gas is a sign of gall bladder problems in women; are you over-forty, overweight and flatulent?. My mother, my sister and all of my mom’s sisters have had theirs removed, why wouldn’t I hope it was my gall bladder?

I lost 15 pounds in our first semester at Woodstock, but put it down to the daily walk to and from school (with 500 feet of altitude climb on the way home to Mt. Hermon), hiking, and not exactly loving school cafeteria Indian food. I was exercising more and eating less, who wouldn’t hope to lose weight on that regimen?

Looking back, we now think my discomfort wearing a back pack with a hip belt on activity week in November, 2009 was probably related to the cancer. I had noticed that losing weight didn’t seem to diminish my gut/waist measurements as much as one would expect, but shrugged it off. in November and December, I had tested for parasites, thinking my intestinal discomfort (gas, occasional diarrhea, bloating) must be related to intestinal “guests”; both times, the results were negative.

In March, I first noticed a change when making love. I wouldn’t call it pain exactly, but there was a discomfort that hadn’t been there before. later, Dave would say there wasn’t as much “room” in there. it wasn’t until I began having painful bowel spasms and occasional vaginal spotting, that I became seriously worried. The spotting was very minimal and happened for a day or two, then nothing for a week or more. The bowel spasms were actually causing hallucinations, I saw flashes of light, always centered around a small jar in the bathroom that held matches for lighting candles. more than once, I took the lid off the jar to check for lightening bugs inside. The spasms subsided, but since my father had had colon cancer, it raised a far more ugly possibility than gall bladder problems.

On May 20th, 2010, I had my first sonogram which showed an endometrial thickness of 3.2 mm in a” normal” pelvic sonagram. on the 5th of June, the second (also “normal”) sonagram showed the endometrium was 5 mm. The gynecologist asked if I was “stressed” (Oh please – who isn’t these days?), and suggested looking up irritable bowel syndrome. in her defense, normal sonograms DO NOT usually show ovarian cancer, it takes a trans-vaginal sonogram for ovarian cancer to show up. nobody recommended one, and I hadn’t really heard of it at that time. Discouraged, I decided to wait until my stint as Interim Human Resources Manager ended in mid-June and see if my symptoms disappeared. If so, I could put it down to stress. If not…

At the same time, I was encouraged by Dolma, one of Woodstock’s nurses, to go to the local hospital and just have a regular physical. I’m convinced that her advice, and Dr. Elizabeth David at Landour Community Hospital, saved my life.

While Dolma held the curtains closed, Dr. Elizabeth checked me out, listened to my list of symptoms, my family cancer history (which she really didn’t like) and ordered a battery of tests, including an immediate endometrial biopsy – performed in an upper story room with lots of windows that let in the sun for light if the electricity was less than reliable.

This year, over 22,000 women will be diagnosed with ovarian cancer, about 70% will not be found until they are already in stage three or four. some will have taken 3 months to 1 year before getting a definitive diagnosis. more than fifteen thousand women will die. you don’t have to be one of them – if you pay close attention to your body and follow up all symptoms that could possibly be related to ovarian cancer.

Early ovarian cancer may not cause obvious symptoms. But, as the cancer grows, symptoms may include:

• Pressure or pain in the abdomen, pelvis, back, or legs
• A swollen or bloated abdomen
• Nausea, indigestion, gas, constipation, or diarrhea
• Feeling very tired all the time

Less common symptoms include:

• Shortness of breath
• Feeling the need to urinate often
• Unusual vaginal bleeding (heavy periods, or bleeding after menopause)

Most often these symptoms are not due to cancer, but only a doctor can tell for sure. any woman with these symptoms should tell her doctor (What you need to know about ovarian cancer).

Other websites list being quick to feel full when eating or loss of appetite. more recently I read that ANY vaginal bleeding after menopause should be taken seriously and always ruled out as possible ovarian cancer. Check here for more info:

• Six questions to find ovarian cancer early

Ovarian cancer is the 9th most common cancer among women, but the 5th leading cause of cancer deaths. The survival rate has remained essentially unchanged over the last 30 years. Hopefully, we are on the verge of changing those dismal statistics. As I posted earlier, there are new discoveries that could make cancer as a death sentence, history, several are already in clinical trials. in the meantime, the best defense women have against ovarian cancer is to be aware of their body and take any symptoms seriously.

Tomorrow, March 8th, is International Women’s Day.  Take a moment and take care of your health.  Stand up for yourself if you are concerned about any symptoms you may have; pursue the kind of medical tests/check-ups that can make a difference. If any friend or family member has told you they’re worried about (symptoms), make sure they tell their doctor. In the end, your doctor can’t guess what you don’t tell them. I called mine today and told the nurse I couldn’t do another week like last week; waiting another week to see the doctor is too long.  we moved my appointment up to this Wednesday – the day after tomorrow. The doctor can’t guess how I feel, nobody but me can say how much pain is too much. nobody but you  can be responsible for your health.

Limbo-land update

I’m finding this time in “Limbo-land” much more difficult than expected, with more pain/continuing side effects. I find it hard to believe all of the pain is just a carryover side effect from chemo, given that I haven’t had any chemo since early Feb. I am now almost 3 wks past the first missed chemo. Between the lower back pain, chest pain and (as always) gut pain, it’s hard not to think SOMETHING is happening… I hope to qualify for clinical trials and begin a new stage of treatment soon.

On a gray day without sunshine or good pain management, I get depressed and think I’m going to die sooner rather than later. on a sunny day with good pain management, I do housework, get out for a walk or bike ride, and expect to live for years. Pray for more sunny days!

Remember “Whack-a-mole“?

According to Saturday’s “Bluff the listener” segment on National Public Radio’s game show, “Wait, Wait…don’t tell me”, an employee hoping to keep his job, programmed a virus into the game software ensuring the company would need him to “fix” the problem. He’s now charged with “offenses against intellectual property” and facing 15 years in jail.

Thank you for your continued love and prayers – don’t stop!

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