Friday, May 15, 2015

Three Heads are Better than One

Three oncologists all attended one seminar.  Three oncologists with three different life experiences have three different takeaways from said conference. The data that was presented (as usual) leaves me somewhere in the "unknown", the "it's really up to you", the "well on the one hand.....but then on the other...."

Needless to say, since my last post I've been doing major soul searching. Soul searching is so exhausting. I had a solid week of nightmares and anxiety so bad I woke up clenching my jaw. I have been able to take so many hits on the chin and skip on down the lane but this one had me deadlocked in my boots.

Let me tell you about my new friend Dr. Mchayleh. I had met Dr. M in a public capacity when we both spoke at the BFFL event last fall. I have heard wonderful things about him since he began his oncology practice here in LaGrange and found them to be more than true when I consulted him for a second opinion.  He was so warm, personable, and uniquely knowledgeable to my personal circumstance.  He had even printed articles for me to read. He knew I was overwhelmed at the prospect of losing my ovaries. He paused, and sincerely spoke to me as he would his own sister. As a student in elementary, middle, high school, and even college, I have always done better with a more compassionate teacher. I am a firm believer that it takes all kinds of people to make this world go round, but at the end of the day, I am a patient with a sensitive soul who longs for a tender-hearted doctor...and I think I have found him. He has also ordered a genetic retesting of my entire gene panel to look for a new mutation, among other interesting reasons.

Dr. M knew I would benefit from one more set of listening ears, and he wisely suggested them to be female. So he made a call and sent me to see a firecracker oncologist at Northside named Dr. Amelia Zelnak.
Much more thorough and fact based, she broke down all the data that explained the recurrence and/or survival rates with those patients just like me who were under the age of 35, had chemotherapy, and were HR+.  We went on to further discuss the added benefit that was observed with exemestane.  Here comes your chemistry lesson: The main source of estrogen is the ovaries in premenopausal women, while in post-menopausal women most of thebody's estrogen is produced via the conversion of androgens into estrogen by the aromatase enzyme in the peripheral tissues and a number of sites in the brain. Estrogen is produced locally via the actions of the aromatase enzyme in these peripheral tissues where it acts locally.

In English, this means that rather than committing to the irreversible very permanent decision to remove all my baby-makin' parts, I along with 2 out of 3 of these savvy docs have decided to opt for Adjuvant Exemestane with Ovarian Suppression for the remainder of my total 10 years of cancer treatment.  This means that for the next five years, I will receive a monthly injection that will suppress the ovaries' estrogen production, in addition to switching medications from Tamoxifen (this blocks estrogen coming from ovaries) to Aromasin (this blocks estrogen coming from peripheral tissues). The hope is that when this leg of the journey is finished, and the injections stop, I regain ovarian function and nature allows me to live another 10-15 years as a normal woman.....before menopause makes its regularly scheduled stop.  Of course, there are no guarantees that this will happen.  There are no promises my ovaries will churn out estrogen normally once I have subjected them to this shut down madness...but there are no promises to the contrary either.

I am explaining this to everyone as if their favorite roller coaster has been temporarily closed for's a bummer, and it will take adjustments, but after a while hopefully the mechanics will be worked out and once the oil is added and the gears are checked....back in business!

Who knows folks......I may just get a little Baby Byrd after all. 38 is the new 22 right???

Friday, April 10, 2015

Just like Angelina, but worse...

It seems I go a year between posts these days. I'd like to say that's because life is normal, with nothing major to report. And until yesterday, that was true.

I see my oncologist, Dr. Pippas, every six months now. Upon entering the room he immediately noticed my hair color. "You look beautiful Carly've made a change with your hair...I like it. It's always a pleasure to see your name on my schedule." He went on to reveal that my tumor marker number was a happy 23 (anything less than 38 is the goal). So far, so good.

He did a physical exam and did not encounter any unknown masses...which always paralyzes me momentarily because I'm immediately jolted back to the day four years ago he so casually identified the Stage II lump under my left arm. He then rolled backwards and we embarked upon yet another life-changing conversation together, probably our fifth or sixth by now.

"Carly Byrd, since you were pre-menopausal and HER2/neu positive, it's time to remove your ovaries and Fallopian tubes, and preferably your uterus."

In summary, TOTAL HYSTERECTOMY. I will be 33 on June 10th.  I am supposed to have this done within the next six months. My eyes have been like broken faucets for more than 24 hours now. All I can think is how badly I want to go back in time and tell this little girl--> not to anticipate a normal life. Stop saying you can't wait to have children.  Just stop making expectations for your future and let it just happen. That way when you're preparing for your 20th surgery near your 33rd birthday, you will just feel that it is your normal.

What I find most frustrating is that all of the magical parts that females can do miraculous things with are ALL being removed from me. Breasts, uterus, ovaries. All in an effort to prevent MORE CANCER.......breast cancer, ovarian, uterine......

I meet with my friend and ob/gyn next week to discuss my options. It is still up to me whether to have a full hysterectomy or only the ovaries and Fallopian tubes removed. Until then, my fingers will be cramping with the all too familiar google research cram session. Thus far I've encountered that the following side effects to just the oophorectomy alone include: Bone thinning (osteoporosis), discomforts of menopause, and increased risk of heart disease.I am so scared to google the side effects of hysterectomy. Needless to say, instead of the medicine cabinet of a 70 year old, I will now have the medicine cabinet of a 90 year old.

I am sure some of you reading this have or have had cancer.I am sure some of you reading this have or have had a hysterectomy. But I would also be willing to bet that most of you have beautiful children that have your eyes, your laugh, your sense of humor....

If I seem despondent or removed, now you know why. It is not in my nature to dwell in the funk for extended periods of time but this has me absolutely shaken.

Thanks for reading.  Keep on praying since this journey is apparently NEVER ENDING.