I met Sally on my first Taxol. I awkwardly stared at her across the aisle of the comfy chemo chairs. You just don't see many young women or men in the chemo room. I wanted to talk to her, but sometimes I know I come across as waaaaay too friendly and I didn't want to scare her. It was obviously her first time in the chemo room and she was scared. I wanted to at least tell her that it's ok and it does get better. I wanted her to know that we are fighting the same monster and we will both beat it. I wanted to hear her story, I wanted to share mine. I wanted her to know that she is not alone. Young and fighting.
I kept asking Sam if I should talk to her. We kept making eye contact. It was like meeting someone in a bar and I didn't know if I should buy her a drink or not. My treatment finished up and I was unhooked, so I pulled up my boot straps and got the courage to talk to her. Who would think me, of all people, would be shy?!
I approached her and just asked if it was her first time. She said, yes and I told her it would be ok. We talked about surgery, we talked about our kids, we talked about reconstruction (we share the same plastic surgeon), and we talked about our BRCA diagnoses. Sally is BRCA 1+ and I am BRCA 2+. Our genetics, from the time the sperm met the egg have said that we are more likely to suffer from breast cancer and ovarian cancer than the average woman and man. This diagnoses is our why. We talked about our faith and how helpful each of our churches have been. With a promise of prayer for one another, we parted.
I felt so fulfilled by our meeting. This was the first person in real life who has been through chemo at my age with young ones at home. It was someone that I could simply say "this sucks", and she could say, "yes I know."
I hope that I gave Sally an inkling of hope that day. I hope that I provided her with a sense of empowerment rather than fear. I know Sally gave me more than I can explain. She gave me a sense of community, that I wasn't alone in this. Our treatments have only coincided a few times because of changes in schedule, but I am so blessed by Sally and I can't wait to see her on Friday.
So Sally, my chemo friend, one day our hair will grow back, one day we will have complete breasts, one day we will not have to meet while we are being poisoned, but for now, thank you. I can't wait for one day when we can meet for lunch.
Late Friday afternoon I got a call from the genetics ladies at the Piper Center. It was 3 minutes until my work day was set to be over, but I recognized the tell-tale 612-863 number as one from Piper. The incredible smart and fast talking geneticist told me my BRCA results were in.
What? Hold the phone. These results were supposed to take 2-3 weeks to get back and it had only been 8 days.
BRCA is the cool genetics way of abbreviating BReast CAncer. There are 2 breast cancer genes known by scientists today. BRCA I and BRCA II.
BRCA I carried very high rates of early breast cancer, reoccurence of breast cancer, and development of ovarian cancer. BRCA II also carries the risk, but it's much better in terms of statistics.
One of the first things people ask a 28 year old with breast cancer is "does it run in your family?" In short yes. My grandmother had breast cancer more than once which resulted in a bilateral mastectomy. She then developed ovarian cancer. But, Grandma Mary (my dad's mom) is still kicking it strong at 83 years old. Her first cancer developed at age 61. This isn't young, but relatively speaking it is young. She is 15 years cancer free from her last cancer. This gives me a lot of hope.
Our pathologies were very similar. She was also estrogen and progesterone positive. For some reason I never felt this was a coincidence. You don't find many coincidences in science. Mary always said "I bet I have that gene." She doesn't have a lot of direct breast cancer links, but there were many other women in her family who also died of breast cancer at fairly young ages. Mary was never tested for BRCA. Back when she had cancer there were not laws in place to protect her family. Her doctors actually urged her NOT to get tested. He told her if both she and her son's families had Blue Cross (or any of the same insurance) if she came back positive Blue Cross could use her diagnoses as a pre-existing condition and cancel her son's policies. She didn't want to hurt any one from getting medical care if they needed it.
Because I am so young and there are now federal laws in place to protect my families, I opted to get tested. I felt like this was the final piece of information my Type A personality needed.
I am BRCA II positive. I carry the breast cancer gene.
Somewhere along my gene sequence at pair 2,609 (or something like that) I am missing a T. Think of your DNA unfolded like a ladder. At each rung of the ladder there is a pair of letters. The combination and order of the letters make you who your are. G, T, C, A. The G is matched with C and the A is matched with T. Down my ladder where there is an A I am missing my matching T.
Something so trivial, yet so tell tale of what is going on in my life today. This mean my dad has to have this gene and Grandma Mary has to carry this gene. She was right. She is a breast cancer gene carrier.
To some this may sound awful--NO!! To me this is great news. We know exactly what is causing my cancer. This is one of the 2 most studied breast cancer genes. Doctors and scientists know how to FIGHT my cancer. This also means my surgical options aren't really options any more. The recommendation for someone who carries a BRCA gene is to do a double mastectomy. I AM MAKING THE RIGHT CHOICE!!
This results took a huge weight of uncertainty off for me. There is still a lot of unknowns and hurdles to pass, but right now I know the plan of action we have chosen is the right one. I will not second guess myself and I will never look back and think I should have chosen differently.
After a whirlwind of my diagnoses and telling our family and friends I knew there would be more appointments to follow. On our way on on Tuesday, Megan the CCC called and said she had set up an appointment with the Virginia Piper Cancer Center. I would be meeting with a couple women whom are far too smart for their own good.
I went to work on Wednesday thinking I only had one appointment. Who was I kidding? The plastic surgeon's office called and wanted me to be fit into Dr. K's schedule. Dr. K who would soon learn is a fantastic surgeon was going on a mission trip to repair cleft pallets and lips in Peru for a week. I felt really good about that because it gave me some more time to think about all of my options.
Sam picked up me from work; I was scared just felt better with him with me in the car. We could talk about things and absorb them together. We drove to Dr. K's spa clinic and waited to patiently to see what he could offer us in forms of reconstruction. Dr. K walked in with a warm face and a kind voice; ready to give me options on how to love myself in the mirror again someday.
The options the breast surgeon Dr. DJ gave me where 1) lumpectomy with radiation; meaning removing the tumor and a little more healthy tissue followed by 5-6 weeks of radiation treatment 2) single mastectomy; the removal of the cancerous breast 3) bilateral (double) mastectomy; removal of both breasts. With both options 2 and 3 there is an option to reconstruct the breasts.
The options were overwhelming at best, but very informative. In order to reconstruct a breast Dr. K would implant a tissue expander underneath the chest muscle. He then would inject the expander with saline once a week until I reach my desired fullness. After the breast reached the size I chose, Dr. K would then implant a soft implant. After healing the nipple would be constructed and finally later in the office Dr. K would tattoo on the aereola.
As Sam and I left we felt very comfortable with him. We went to lunch and my mom called to get an update. I lost it. I cried in the middle of Fudruckers while waiting for my burger. I cried because it's unfair. My whole life crashed down in front of me. Nursing school was on hold, our chances of having another child may not happen, and I will never breastfeed again. It's unfair and I feel like I've been through enough. Not having all of the answers was frustrating, but I dried my tears and hung up the phone.
Sam then drove us to the Virginia Piper Cancer Center to meet with Shanda in genetics. Piper, for short, is a calming tranquil clinic lit with dim light and kind faces. Shanda met with us in a conference room and talked about the science of breast cancer genetics. In short, women have a 1 in 8 chance of developing breast cancer. On my dad's side of the family there are 2 women out of 5 with breast cancer. Nearly half.
28 year olds don't get cancer and there has to be a reason why this is happening. Shanda recommended I don the testing for the BRCA gene. This is the breast cancer gene. You can test for 1 or 2. If I were to test positive for BRCA 1 gene, being diagnosed under 30, in the next 10 years I have a nearly 60% chance of reoccurring breast cancer and a 40% chance of developing ovarian cancer.
If not for me I will do the testing for my sister and for my children. I feel it's important for our family to know what they are up against so they may get proper testing. It was a very overwhelming day, but really informative. Sam and I were feeling closer and closer to making a surgical decision on how we would first attack this monster.
