Community Chest

I guess I should start from the beginning for those of you who don't know my story. If you're not one for stories, and just want to get to the meat of the matter - feel free to scroll down to the nitty gritty. =)

My name is Genevieve Lanham. It's been a while since I've had to actually sit down and think about where this whole thing started, so please bare with me. I'm a single mother of two little boys. My eldest, Joey was born in February of 2009. My youngest son, Daniel was born at the end of July in 2012. I married young (at 21), and my (now ex) husband chose to join the military to support our family. We weathered a deployment, but couldn't overcome several obstacles following - and our marriage  ended the following year. I was 3 1/2 months pregnant with our second son when we parted ways.

Despite everything going on in my personal life with working and caring for my then three-year-old son, Joey, I chose to exclusively nurse my youngest as long as I could, determined to give him every benefit afforded to my firstborn child.  (This probably saved my life!) In November of 2013, I developed a large mass in my left breast. It became swollen and inflamed, barely fitting into my bra. The whole breast was hot and itchy, and the skin started pitting like an orange peel. I thought that I had mastitis, because in every way - as a young nursing mom, it made sense.  However, by December it was causing me severe pain, and I actually got sick while visiting relatives over the holidays. I scheduled the first appointment I could get with my insurance (Medicaid at that time) - and I was seen January 2nd by my primary care provider.

She was immediately concerned that what we were dealing with was NOT mastitis, and immediately scheduled me for a breast ultrasound. At my breast ultrasound, there were hushed whispers outside of my room... I was nervous as they immediately took me in for a mammogram - the first of many I've had now over the past couple of years. They told me then and there that they were concerned about the high possibility cancer. I was only 25 years old, and I had a new baby at home. I insisted on a biopsy to be sure, and had a core biopsy done at the surgery center in Enterprise just a few days later. The entire month of January became the kind of stuff that twilight zone episodes are made out of. January 13th, I was in a car accident on my way to the church where I was working as a Sunday school teacher. January 14th, I returned to the surgery center to hear the results of my biopsy, and they told me that I had not one, but TWO forms of breast cancer. I had a non-invasive early stage DCIS, and an aggressive stage IIIC hormone-driven inflammatory breast cancer.  January15th (the next day) I had an appointment to see my lawyer who informed me that my divorce would be finalized in 10 days. My whole world was suddenly spinning, and I couldn't make it stop.

Further testing revealed that I had TWO tumours in my left breast. One was 7 cm, and the other was 2 cm. It had already begun spreading to my lymph nodes. The more I learned about this cancer, I learned that it accounts for less than 1% of all cancers, and that it mainly affects older black woman. I was 25, and nursing a baby, at that - which is supposed to reduce your risk. I was originally told that I could continue nursing because the cancer cells couldn't be transmitted via breast milk. but after the tests indicated that it was hormone-driven, I was forced to stop. My oncologist told me that if I had not been diagnosed when I was, I may have had 18 months to live. I would not have made it to my baby's 2nd birthday, or even my own 27th. I am 27 now. I am lucky to be alive.  No one is sure how long the cancer had actually been there, but nursing my son made the tumors grow quickly and aggressively enough to be detected and treated before they quietly snuck up on us and gained the upper hand. My son effectively saved my life.

I underwent 6 months of chemotherapy. First it was with a combination of Taxol and Herceptin until the Taxol made my fingers and toes go numb. This ended with an ER trip on Easter Sunday. The next round was with a drug called Doxil, which actually ended up leaving me hospitalized with Stevens Johnson syndrome as I lost the skin over nearly 70% of my body. I couldn't even hold my baby because of the excruciating pain. I spent 6 weeks prior to my hospitalization on my mother's couch living on Lortab, bathing in heavy duty Eucerin, and wearing only a  bed sheet.  This was in June. Shortly after recovering, August 2nd, 2013 - I had a radical modified mastectomy of my left breast. They took the entirety of my left breast, the assosciated lymph nodes, and the top layer of my chest wall. Then I underwent 6 weeks of heart-sparing radiation, and another 6 months of chemo, this time herceptin only.

The doctors told me that I would need to wait at least a year to 18 months for the skin on the left side of my body to fully recover before reconstruction was even feasible. In the meantime, I've been wearing a hefty prosthesis, which throws me off balance and affects my posture. I was a 38D beforehand. Now, with there being no tissue to work with on the left side, I am looking at a process that places expanders behind the muscle of the chest wall and gradually stretches it until they can place a more permanent implant behind it. They will not be able to comfortably take me to my current size, so unless I alter the left as well, my breasts will not match. Therefore, I have chosen to also have a prophylactic mastectomy of the right breast and an expander as well, so eventually... I will be looking at will hopefully be smaller - but relatively matching breasts.

Medicaid would not pay for this surgery, because without me presenting with cancer in BOTH breasts, they said it was unneccessary. The only way that they would cover a double mastectomy was if I tested positive for the BRCA1/BRCA2 genes - and surprise! - they don't cover the cost of the genetic testing. It comes out of pocket. My family quickly scrambled to come up with $4,000 just to discover that I do not carry these genes, despite an extensive family history of cancer. We basically threw $4,000 out the window because lo and behold - we found out that an elective mastectomy would only be about $6,000. I patiently waited as I underwent treatment and put everything on hold...just waiting to start my life again. As soon as I was able to work, I began looking. A few days after I completed chemo - an 18-year-old driving on a suspended license pulled out in front of me and totaled my car while I was job hunting. He had no insurance. You can't insure someone who doesn't have a license.

So, I frantically scrambled to find new transportation. I got a decent deal on a newer car, and got hired at Publix (by the grace of God) literally the very next day. I still had the tags on my keys, The assistant store manager asked me if I had my own transportation, or if I was driving a rental! Things were finally looking up as I resumed my life, working and trying to make a life for me  and my two boys.

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A while back, someone suggested to me that I create a "GoFundMe" to have my boobs taken care of. At the time, my insurance looked like it would cover everything. I had Medicaid, and wasn't worried. When I started working again after finishing chemo, the state of Alabama informed me that I was making too much money for Medicaid - despite my earnings still putting me nearly $4,000 below the state poverty level! I am currently paying $263 a month for the coverage I need for my scans and all that fun post cancer-related mess. I recently discovered that a new breast is going to cost me literally thousands. It's not just the surgeries, but doctors appointments, travel back and forth to Birmingham, etc. I'm at a loss.

Though I've made peace with having one breast, I am only 27 years old, and it does get tiring having to build my wardrobe around my chest. Reclamation has been a slow process. I have worked at my current job for over a year and have worked super hard to show my children that we don't just quit when life gets hard. I don't want to have to quit my job just to get insurance that covers this surgery. I don't want to have to start all over in my quest to get a house. And, I certainly don't want the government owning any more of my corporal body than they already do! I am a contributing member of society, gosh darn-it. I work hard for everything I have. No more starting over. I never smoked, or laid out in the sun...I don't even carry the BRCA1 or BRCA2 genes. I breastfed BOTH of my children, avoided soy, etc - but I still wound up with an aggressive inflammatory breast cancer. Now, I'm going to be unfairly penalized for it by Uncle Sam for the rest of my life. I'm not going to let this stupid thing define me!

So, I am officially caving. Who wants to help me buy a new boob? Today, I am seriously going to create a GoFundMe account for just this purpose. I promise not to spend your hard-earned cash on booze or clothes, or other frivolous stuff. I just want two breasts. Who's with me? I already thought of the perfect name for this endeavor - "Community Chest". Ha, get it? Because... yeah. BUY ME A BOOB. (Please.)

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I have a lot of updating to do... June 1st, I had the surgery to have my second mastectomy and to have the expanders placed. The 2nd day post surgery, I experienced the worst pain I've ever experienced in my life. I ended up collapsing in the floor in front of the refrigerator at 2 a.m. in the morning, spilling ice water on myself, and crying until my parents found me. Not my highest moment. Just two weeks later, I began having problems with abnormal swelling, which led to an ER visit where I was informed that they were infected. They said, "Cellulitis".... and treated me two days in a row with IV antibiotics. I spent 4 weeks on antibiotics with no improvement and continued swelling until I wound up hospitalized with a fever of over 103 degrees. June 30th, they had to operate, removing the expanders. Both sides were infected. The lab results came back stating that I had both a staph infection and morganella.

I was heartbroken. I felt like my body had failed me, and like I had failed all of you. I still had medical bills to pay, now for an additional surgery that wound up setting me further behind. I was unprepared for the fact that it could fail, despite my own best personal efforts. My chest is just a relic of it's former self. I was told that I needed to wait 6-9 months before attempting any more surgery, and that trying expanders again, though not entirely ruled out - would not be the best choice for me. I am now looking at a flap surgery. For me, the preferable choice is a muscle-sparing DIEP flap. I have to start over with my fund raising, and it could be a year or more before I'm able to attempt more surgery. 

I'm currently back in college as a full-time student. I can't afford my insurance anymore, so I will be going back on medicaid for the time being... at least until it's time to try again. Hopefully, when I have my degree, I'll be able to get a better -paying job with health benefits and this won't be such a a huge obstacle. In the meantime, I am stressing hardcore trying to juggle studies with finances and my children - but I know it will be worth it.
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