Wednesday, January 29, 2014

A Miracle Journey: Bald, Pregnant, and Living


Click this photo, my hand-drawn logo, to see more of my story.
“You have breast cancer,” the surgeon deadpanned. I glanced at my husband and then my mom, and waited for the punch-line. It never came — the doctor was deadly serious. He had just performed a biopsy (that amounted to a lumpectomy) with me wide awake and all-too-aware of the hole dug into my left arm-pit/breast area to remove the 2.5 cm tumor. The lack of anesthetic was due to my other condition: I was 20 weeks pregnant with my 6th, but only 2nd live, child (the other 4 pregnancies ended at various stages as miscarriages). I was only 28 years old — 20 years younger than my mother at her diagnosis (October of 2005) -- on that July 7th of 2009.

The shock

The surgeon who performed my biopsy/lumpectomy looked so bleak. He did not have any real options to give me. His lack of options was only repeated by the local oncologist, my ob/gyn, and my internist. The options shown to me and implied by these members of the medical profession were twofold: try to live myself by aborting my child OR risk dying from the cancer by allowing my child to live. My ob/gyn and internist knew me well enough to know that the first option wasn’t really an option at all. So we set out to find an alternative.
I was shocked and dismayed (that’s an ENORMOUS understatement) at my local doctors options, so I turned to the WWW. I searched the Susan G. Komen site*. I searched the American Cancer Society site*. I did meta-searches. Almost all gave me the same options: abort my little girl then seek treatment or let my little girl live and possibly die myself. That was UNACCEPTABLE and ABHORENT to me.

The port in a storm

Luckily, my mother had been to MD Anderson in Houston, TX for her breast cancer in 2005. She had my doctor send a referral request down there. Less than 10 days after my diagnosis (6 days after ultrasound confirmed that my unborn child was a girl), I was in Houston meeting Dr. L, a breast oncologist at MD Anderson. I was a trifecta for her — her specialities are 1) Young women with breast cancer (check), 2) BRCA1 mutations (check), and (most importantly) 3) Breast cancer treatment of pregnant women (check). I had tests performed during that week in TX that would have taken MONTHS to schedule locally. I had more expert opinions than I knew were possible! Most of all I had HOPE!!

The plan

As I returned home, I was still frightened, but at least I had a plan. What a plan it was! It began with chemotherapy while maintaining my pregnancy. My first dose found me in the hospital for 3 days just as a precaution. Three times following that I carried a small pump with chemotherapy in it with me for 3 days. Chemotherapy was discontinued after 4 rounds to let me build up for the climax - the delivery of Rachel Eleonore on Thanksgiving Day (her daddy’s birthday as well as her exact due date). A little more than a month later, I began 4 rounds of a different combination of chemotherapy drugs. Rachel was not even 3 months old before I had the first of my surgeries - a modified radical mastectomy with immediate expander implant reconstruction. At that point, I was cancer-free and Rachel was alive and growing quickly.

The deepest cuts

A little more than a year following my diagnosis I had a bilateral salping-oophorectomy (tubes and ovaries removed). However, that surgery threw a huge monkey wrench into my life due to excessive blood loss during surgery and an abscess removed a month after surgery along with my uterus. My implant exchange surgery happened almost exactly a year after my mastectomy. Yet, due to constant pain I had to have yet another reconstructive surgery this time using my belly fat to form breasts, called DIEP reconstruction surgery. After a long struggle, even this last reconstruction was unable to eliminate the almost constant pain. The cause of my pain was diagnosed to be Thoracic Outlet Syndrome. Physical therapy and body awareness usually alleviates the problem, but not for me. I went under the knife again to have my left first rib removed to give my nerves and blood vessels more room to move. All told, I had 8 surgeries including my biopsy for diagnosis and installation of my port for chemotherapy.

The survival

I have made it thus far carried by the prayers of family, friends, and even complete strangers around the world. This has been my chance to shoulder my cross and lead the way through a trial. To date, both my children have been in the local Walk for Life every year of their lives, including in the womb. I was a spectacle in September of 2009 when I walked bald and very pregnant (I was due in November) to the half-way point. In a way, I thank God for the opportunity, although at other times I ask God why He thinks I’m strong enough. Yet, through His grace, I am here and I stand strong with my wonderful daughter (and her older brother and their father) to be a vivid example of respecting life. There have been many bumps in the road, but I have NEVER once regretted the decision to keep my precious baby girl who will be turning 5 in November of 2014. Her survival was not a surprise, but a blessing.

The statistics

Sadly, I am no longer capable of bringing more children into this world. As a precautionary action, I had my ovaries and uterus removed since BRCA1 increases the risk of ovarian cancer by approximately 40-60%. In my mind, given my young age at breast cancer diagnosis, a young age of ovarian cancer was probably in my future. In addition, my maternal grandmother suffered alternating bouts with breast, then ovarian, then breast again for the last 5 years of her life. However, my inability to carry children in my womb has strengthened my resolve to help other women know that they can. I am a vocal advocate of the pro-life movement. 
I am also very vocal about the details of my story. Statistics tell us that 1 in 3000 – 3500 women diagnosed with breast cancer will be pregnant. To me, that means that the more I spread the word that women and their baby can live through the cancer, the more lives will be saved. I have recently personally heard about a woman who had brain tumors that received chemo and radiation while pregnant, again with no effect on the child.

The moral

To me, the moral of my story is that being pro-life is not a death sentence for a pregnant woman or her unborn child with a horrible disease like cancer. It is entirely possible to overcome numerous diseases and have a happy healthy baby in the process. Many cite “life of the mother” as a reason for abortion. Well, I’m here to say that many of the times “life of the mother” is cited, abortion is not in the woman’s best interest. As a matter of fact research has shown that pregnant women with cancer who keep their baby have a BETTER survival rate than their counterparts who abort. That is scientific fact that should be proclaimed from the housetops. Regardless, abortion is definitely not EVER in the baby’s best interest!

Pro-Life Lady Ribbon
You can also read about the development of the Lady Ribbon, a pro-life, pro-woman, breast cancer awareness symbol.

4 comments:

  1. Hi Erika,
    I work for MD Anderson's communications department. We'd love to share your story. Is this something you would be interested in? If so, please send me an email at cancerwise@mdanderson.org. I look forward to hearing from you!
    Kellie Bramlet
    MD Anderson Cancer Center
    Communications specialist

    ReplyDelete
  2. Hi Erika! I have a quick question for you and was wondering if you could email me when you have a free moment! Thanks, I hope to hear from you soon!! :-)

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  3. Hi. Your story has given me so much hope. I was diagnosed with stage. 2 tnbc at 19 weeks had lumpectomy and lymph nodes out at 20 weeks and started chemo at 24weeks. I also havebrca 1 mutation so will have mastectomy and oopherectomy after baby.as well as radiation. I am 26weeks now . Its all so overwhelming your story helped me see a light at the end.

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  4. Katie, I'm so sorry you have to go through all this, but if am so glad my story can help you see the light at the end. If you want to 'talk' about it, let me know. I will pray for a wonderful outcome for you and baby! God bless you and may His Light shine for you!

    ReplyDelete

My Chemo-Jane hair-style

My Chemo-Jane hair-style
I just had to have my mom buzz my hair because it was falling out so badly.

Pre-op wearing my hand-crocheted cap with my prayer shawl.

Pre-op wearing my hand-crocheted cap with my prayer shawl.
My loving husband is watching me distract myself with a game on his iPhone.

2 days after my BMX w/ 100ccs in the TEs

2 days after my BMX w/ 100ccs in the TEs
I even have a fashionable belt to hold up my drains.

3 weeks post-op w/ 400ccs in each TE

3 weeks post-op w/ 400ccs in each TE
The smile is fake because the TEs were irritating!