Where I've Been

I haven't posted much over the last few months, nor have I updated Twitter often. My life changed in a moment, as many lives have, with one statement, "You have cancer."

It was a twisted road just getting to the diagnosis. I can't help but wonder how many people are out there, undiagnosed, simply because they accept what their doctors tell them without question.

My journey began with a simple prescription refill. I take Zoloft on a daily basis for anxiety. I was running low on pills, and didn't relish going back to the doctor I'd seen in the last year. As anyone who has taken this type of medicine knows, quitting cold turkey is not an option. Long story short, I needed an ally in my health battles, not a judgmental authority figure. I did a bit of a search, and found a general practitioner who has a special interest in women's health issues. Bonus: her office is less than ten minutes from my house.

I went in for my first appointment with her at the beginning of September. I've been diagnosed with Polycystic Ovary Syndrome (PCOS) in the past. We discussed various treatment options, and she did the normal annual screenings. I was having some pretty severe menstrual problems, to the point where I told her I'd be happy to have a hysterectomy and be done. We both agreed it would be best for me to see a gynecologist. She set up a referral.

Now, a bit of background. I've dealt with severe menstrual problems for over a decade. I'll spare you all the details here, except to say I've seen several doctors, including a reproductive endocinologist. Each time, I was sent home with, "you're perfectly normal, aside from the PCOS." The only treatment options I was given made me ill, and when I expressed that, I was told to simply put up with it.

So I saw a gynecologist at a local clinic at the end of September. He did an exam, and prescribed norethindrone. When that failed, he set up a few more tests, including an endometrial biopsy. This is an in-office procedure that can be fairly routine - as long as you've had children or a procdure to dialate your cervix in the past. I had not. I was not instructed to take anything (such as ibuprofen) beforehand. It was an excruitiating experience, and he was not able to get the biopsy he needed. He scheduled a D&C for mid-October.

The D&C was routine. The pathology report came back stating, "endometrial hyperplasia without atypia." This means there were some abnormal cells, but nothing cancerous. After the D&C, my bleeding was so severe I had to have a blood transfusion on November 6th.

This doctor's recommended treatment for my condition was to insert the Mirena IUD. Once again, keep in mind I've never had children. All the research I've done on Mirena, and IUDs in general, do NOT recommend inserting them in women who have never had children. Further research on my part found research studies ongoing using the Mirena to treat PCOS. Ok, so at this point my feeling is that I'm becoming a guinea pig. I'm uncomfortable with the recommendation, frustrated that things have become so bad I needed a transfusion, and disillusioned in general. I started asking my colleagues for doctor recommendations.

I made an appointment with a new doctor for mid-November. It took him less than two minutes to tell me my uterus was enlarged about three times the size of normal. Because the previous doctor had not done a PAP smear, and it had been about eighteen months since my last one, he also took that sample.

The PAP came back abnormal. I had a colposcopy on December 3rd. During the procedure, he noticed some abnormal cells that concerned him, and decided to do an endometrial biopsy. This time, the procedure went without a problem. The colposcopy samples were benign, but the endometrial biopsy showed possible cancerous cells. He was stumped - I had just had a D&C less than two months previous that should have revealed any cancer. Back to the operating room for another D&C on December 15th.

December 18th, the pathology report came back with the diagnosis: uterine papillary serous cancer, grade 3 cells. This is an uncommon, aggressive form of cancer that acts quite a bit like ovarian cancer. I had a total abominal hysterectomy on January 15th, and am currently awaiting the staging. I'm facing chemotheraphy. The surgeon also found that I had extensive endometriosis - and probably have had this for some time.

I'm still stunned. If I hadn't listened to my body, to my intuition saying there's something more here, I'd be sitting here with a Mirena IUD, and cancer that would be spreading.

Listen to your intuition. Be your own advocate. Gather as much information as you can. Don't take no for an answer.

Getting Late - Rob Thomas

this life keeps moving on
gone away before too long
so tell your friends just how you feel
you'd better say it loud for the world to hear

'cause it's getting late, it's time to go
the paper moon is fading slow
but the night, it keeps moving on
'til it takes you in; it brings you home

while you're watching over the moments that make up your life

it's getting late that's the way it is
you cant deny when it feels like this
and it's strange whats it's bringing out
you're gonna open up, 'cause you cant stop now

it's getting late, you don't know how
you're wide awake, but you're missing out
you get your kicks while you can
then you go to work to pay the man

while you're watching over the moments that make up your life
it's getting late