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.


Wednesday, April 9, 2014

Oh baby baby it's a wild world....

It has been over a year since my last post.  I am very aware of this for two reasons:
1) my one year remission anniversary was April 4, 2014!
2) the storage fees for my "Byrd eggs" became due.

It has been a very emotional year for me. Hearing the word "remission" last April was a wave of relief. However, the journey did not come to an end by any means. I am on Tamoxifen for the next 10 years, a drug with which I have developed a LOVE/HATE relationship. I love Tamoxifen for the promise of occurrence reduction. I hate Tamoxifen for the liver problems it can cause, the hot flashes it brings on, and the fact that as long as I am on it I cannot get pregnant.

There is no NEWS FLASH here or anything, it's just knowing that I have given that control over to a drug infuriates me.

I have been stacking the letters notifying me of the impending storage fees in a nonspecific pile in a direct effort to avoid the decision.  The deliberation I have devoted to this would blow your mind, and has caused more sad, tearful, frustrated days than I care to recall. I finally decided it was time to let them go.  My own body won't be capable of carrying a child until my early 40's and even then there come more complications.  I sat down to write the email to the Sher Institute notifying them of my decision with a lump in my throat the size of a grapefruit.

My mind replays the week in Dallas in 2011 I spent with my mother, and bending over, backwards, and sideways to receive the fertility shots.  Was it all for nothing? The physical pain I endured? The finances it cost us to travel there and receive the drugs?
I am not sure.  I do know that at the time I was panicked by so many situations that it felt nice to prepare for at least one curve ball.  The final step will be to sign the consent form in front of a notary and send it back to Sher.  I dread that with a pain I struggle to put into words. But I also dread receiving those notification letters...."Miss Byrd, you're in remission...don't you want to have a baby???" "Miss Byrd, don't forget we've still got your 25 potential children just waiting on you!"

These are of course not their actual words but absolutely the way my mind translates them. If it were only that easy.  My brain and heart and soul take turns convincing me that "everything happens for a reason." Some days I feel completely content with myself, my house, and my dog.  Content with performing my roles as daughter, sister, granddaughter, friend.............then some days hit me like a brick wall. On one hand, the eggs I'm still making are cancer free (hopefully) but they are also not the eggs of a 29 year old....

I had the precious pleasure of keeping my friend's daughters for the whole weekend.
I taught them how to climb the same tree my sister and I climbed. We walked the trails I walked between my grandparents' house and mine. We had cinnamon rolls on the front porch and we played in the lake.  I even took them over to my dad's house and we fed apples to the horse and discovered my old big wheel. We all three snuggled in my big bed. Pacifiers, chocolate milk, drawings, coloring books, diaper changes, band-aids for boo boos, bath time, and watching them in my rear view mirror as we rode around town.  These are the moments my heart longs to pass on to my own child, and I don't know that I ever will.

Today was a sad one, as an inanimate object brought a rush of emotions. As I was straightening up around my house, I picked up a hat that I had considered wearing to a baby shower on Saturday...the conversation went like this:

Me: "Girls, hat or no hat?"
Ayla: "No hat. I mean the hat is very pretty but I think you are so pretty you don't need it."

That childlike adoration, innocence, encouragement, and preciousness touched me so deeply and the sudden recollection of it hit me like a tidal wave.

I felt compelled to share this event because I know so many women are unable to have their own children for a host of reasons, and as much as we strive for definition beyond the role of "mom" it is still in our heart of hearts. I look forward to a day without the confines of Tamoxifen, surgeries (my next reconstruction is next week), with a hope that I will find true contentment one way or the other.

Sincerely, and a bit sadly,

Monday, April 8, 2013

Ode to Remission!!!

A sight for sore eyes, a long time coming.
No longer the blues, now a cheerful tune I'm humming.
The last five years have tested me hard,
Cancer makes you defensive, you lift your guard.
Topsy turvy, upside down, 
you lose your hair, you lose your crown.
Weakness and strength seem to coexist.
As you search for reasons, and make life lists.
The storm subsides and the sun comes out
Remission is here! I want to shout.
Thankful for family, friends, and faith
Go tell someone you love them, for goodness sake.

Let's recap, shall we? Initially diagnosed in 2008 at age 25...double mastectomy. Returned in early 2011...lumpectomy and radiation. In final days of radiation, diagnosed with Stage 2...Lumpectomy and left axila removal (15 lymph nodes), chemotherapy for a year...finished in August 2012. While I am still undergoing reconstruction procedures and will be for at least the next year, it is an unbelievable relief to know that toxic poisonous cancer is no longer lingering in my body. Breast cancer, pink ribbons, the color pink, and "fighting like a girl" have come to define my life and always will.  But soon, I will be able to look at these things retrospectively, with appreciation for the sisterhood and support they represent.

I am blogging to you from my side porch on a beautiful spring afternoon.  This is the same porch where my great grandmother and I played many rounds of Rummy, and where Meme and Grandad wore slap out their Aggravation gameboard (remember that game?) My spoiled puppy dog is sunning on a pile of pillows...he deserves it. 

We have already begun to celebrate this milestone and the party train will keep on rollin' all summer.  With Fleetwood Mac on tour, and a visit to my sissy's house in Chicago on the books, I'm optimistic I will be able to give and receive a whole lotta love in the coming months.


Thursday, January 24, 2013

Goodbye and Good Riddance to 2012

Since we last spoke...
My house has been renovated! The major changes are complete and now we are still working on final touches. We had a very sentimental dedication a few weeks before Christmas. You can view the video of the "big reveal" below...sorry for the low quality, we aren't professionals. :)
The Reveal
The Dedication

For both Thanksgiving and Christmas holidays, Meme and I traveled to North Carolina to be with family.  Both Thanksgiving Day and Christmas Day included trips to the ER for yours truly. Seriously...I'm not really happened.  On Thanksgiving, there was a major allergic reaction of sorts. I was given ephedrine, pepcid, and nebulizer treatments.  The holiday wasn't a total loss; we simply moved our meal from lunch to dinner and salvaged it. The Saturday after Thanksgiving was a beautiful day to celebrate one of the most important people in my life: Ryleigh Belle. Can you believe she is already ONE? Even though she was under the weather (just like the rest of us) she was a perfect birthday baby. I am excited about celebrating Big Sissy's 5th birthday this weekend.
On Christmas Eve, I felt flu-like symptoms but was stubborn about it (Yes Mama, you.were.right.).  After suffering through the night with a too-high fever, I surrendered and got in the car.  The registration nurse could not believe I was making a repeat holiday appearance, and then the ER doctor actually recognized me! Mind you...this is in NORTH CAROLINA, 300 miles from my usual doctors. After an IV cocktail and more nebulizer treatments, I was released with the promise of wearing a mask around my I obliged after my sister embellished it just a little. :)

Physically, I am feeling pretty well these days. I have hypertrophic scars so my plastic surgeon has recommended several months of scar massaging combined with silicone treatment sheets.  If anyone sees any extra large silicone sheets, let me know! I use an entire box each time I apply them and they only last a few days (and they're 20 bucks a pop!).  I meet with him again in March.  Emotionally, I feel like I have more gray days more frequently now than in the past. It is ironic that when all you can do is focus on surviving this process, you are surrounded. These days are much quieter, sometimes more sullen.  I am excited that my local B.F.F.L support group is ramping back up, but since I seem to be in a suggestion mood, I am all ears if you know of another amazing group of breast cancer fighters/survivors that meet on a regular basis.

Keeping with the theme of support, my awesome and often times crazy little sister Anna has honored me with "PINK" ink! You will recognize it as a modification of the CBHF logo but she has definitely made it her own. The most marvelous part is that she incorporated the things that are important to me and help me through this life...birds, music, love, pink ribbon, and even the font is significant. Very cool little sissy.
I guess it is finally time to attempt sleep again, and curl up with my dog and electric blanket.  Please keep my spirit in your prayers. Please pray for positivity, direction, and encouragement. I will leave you with a glance at my gorgeous guestroom! I'll provide the bed if you provide the breakfast......any takers??? :) 

Monday, November 12, 2012

Renovations and Reconstructions


Both my home place and my body have been broken down, repaired, upgraded, and improved within the last week.  The Fuller Center group and the Home Depot crew began work at 8:00 am last Monday. The deliveries came swiftly...pallets of flooring, doors, windows, cabinets, paint cans, insulation, and other items rolled into my garage without a hitch.  It was an astounding sight as the workers began demolition shortly after lunch.  My nearly Century old house took it like a champ, and braced itself for the royal treatment. I was interviewed by both the Valley Times News and the Troup County News that day and made the front page of both. This project is touching all kinds of people in and around my community in a way that no one could predict. After the second day, I was "banished" and will not be allowed back until it is time for the BIG REVEAL......"Move that bus!" 

After daily trips to Columbus last week (including a normal check-up with Dr. Pippas), I arrived at my home away from home, St. Francis Hospital Thursday at 5:15 am for my implant replacement procedure.

In stark contrast to my previous surgery, this one went very smoothly. I do not remember much between Nurse Pam's generous dose of "joy juice" until I was awakened to move from the stretcher to the recovery bed. I was back in LaGrange on the sofa by early afternoon. Drama-free surgery is the way to go! I definitely prefer it. Mom came down to take care of me in the way only she can, and I am staying with my loving friends The Karrs while my home is being renovated. Today's follow-up appointment with Dr. Jain was uneventful, other than lipo sutures from the fat-grafting, being removed. I will go back next Monday for tape removal.

In other news, I have officially been released from my job at WGTC.  I have to assume there is a bigger reason for this challenging predicament.  As soon as I heal from this procedure, I will be ready and willing to be back in a workplace, full-time, with insurance!!! COBRA has been activated and is so expensive. It will forever baffle me as to why the government expects you to pay exorbitant amounts of money in the aftermath of a job loss. It is a desperate situation, eased only by those of you still generously donating to the CB Hope Fund, and of course my incredible parents: T-Byrd and L-Dog.

I will be sure to update you all after my home is complete! Until then....

Tuesday, September 18, 2012

Let there be water!

Ladies and gentlemen, I present to you CITY WATER. I would like to interrupt your regularly scheduled Tuesday to publicly thank Lindsey Binion for her devoted fundraising efforts that made this epic moment possible.  I also extend my eternal gratitude to those of you in her circle of  family and friends who responded to her plea. While my well water was getting me through (thanks to Dixie Well Boring), the amount of work it was taking me to keep the well working, along with the amount of iron in the water, and rusting galvanized pipes was not an ideal situation for someone constantly recovering from extreme medical situations and a compromised immune system. Today I am thankful for water. What are you thankful for?  Love, Carly XO