December 2018 Newsletter

Holding Space for Joy Amidst Pain
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Dani loves her daughter Sofia. She describes Sofia as strong; someone who, at four, is already negotiating with her Mom about the sequencing of events in her toddler routine – breakfast first, then brushing of teeth. Even at such a young age, it's clear agency is important to her. “She’s tough, she’ll get in there with the boys or older kids, wrestle, and throw herself into the action.” 

Sofia & Dani

It’s evident in the stories she shares with me that Dani delights in raising Sofia, but the road wasn't all easy. She mentions not loving being pregnant, a refreshingly truthful admission which breaks from the unrealistic narrative of loving every part of motherhood. She goes on to describe  her loss of identity during the first year after giving birth. “It was rough,” Dani acknowledges. She wanted to take her time before trying for baby #2. So she waited until last year, when her daughter was almost 3, to get off of birth control. “I don’t think we were really trying. In my mind, it takes a few cycles after getting off birth control for things to get back to normal. I knew I might miss a period as my body adjusted. My attitude was we’ll see what happens” 

But after missing two cycles, she took a pregnancy test that came back positive. She recounts not feeling any  morning sickness, or any of the other typical signs of pregnancy. When she found out she was pregnant, the excitement and anticipation of another child returned.

She was in her obstetrician's office 2 weeks later at the end of October 2017. The usual joy of the first ultrasound dissipated as they realized the baby had no heartbeat – she had miscarried at month 2. The doctor had to perform a dilation and curettage, and she was left grappling with the physical pain and emotional trauma of the loss. To go from not realizing you're pregnant to getting excited about a second baby, to losing the baby in such a short span leaves your emotions playing catch up to reality. Dani was devastated.

A year later, this summer of 2018, she sat on her bed, recovered and thinking of trying again. Her thinking was interrupted by a persistent itch on a spot, almost beyond her reach, on her back. As she stretched her arm to scratch her back, her hand grazed “something” in the area where your breast meets your armpit. Her brain registered that it didn't feel "normal" so she grazed it again. No, it was definitely there, a paintball-sized lump on the lateral side of her right breast. She catapulted into action.

“I have two friends in Boston who found lumps and went to their doctors and were dismissed as being hyper-reactive. They were 34 and 35 – that’s young, I know. But they advocated for themselves and pushed and fought to get a biopsy and they both had cancer. I know it sounds cliché, but they both had older male doctors who were dismissive. So when I felt my lump, I went to my doctor, guns blazing. I knew I wanted that thing biopsied, I didn’t care that I was only 32.”

Dani mentions that her clinic was an all-female practice and the process was easy. Her doctor attempted to allay Dani's fear: “We don’t think it’s anything, could be lymph nodes, but let’s get it biopsied." One week later she had the biopsy procedure performed, and then got on a flight  for her goddaughter’s baptism in Boston. She landed and was on the bus to the car rental when the phone rang. It was her doctor with her results. Dani was diagnosed with stage 1B, triple negative breast cancer. “You get the call and it’s cancer. You’re not home, you’re sitting on a bus. What are you supposed to do with this information?”
Dani's examination room at her oncology OB, who will closely monitor her until she gets her hysterectomy. 
At the inception of a cancer journey, the amount of information a patient is asked to process is massive. “You suddenly need appointments with oncologists, genetic counselors, IVF specialists (if you still want children), a general surgeon, plastic surgeons, labs, MRIs, and then second opinions on everything at a different hospital.” Dani was overwhelmed. 

At Dani’s hospital, a nurse navigator helped her understand next steps and what to expect. The navigator made every single appointment for her. For the last 3 weeks of June, Dani worked a total of 5 days. The rest of her time was consumed with tests and appointments. 
Dani's actual binder of information.
“The month of June has been the hardest part of this journey. First I found out I had cancer. After more testing, they found out it was triple negative, meaning it was the most aggressive type of cancer and wouldn’t respond to most of the therapies available. And then my genetic test results came back and I found out I was also BRCA1 positive. At that point, they highly suggest you have a double mastectomy. You find yourself trying to digest statistics on survival rates and confronting death. Worse, I had to confront the fact that I may have passed on my BRCA mutation to Sofia or my sisters might also have it. But once I processed all of this data, I was so grateful for the knowledge. If I didn’t know I was triple negative AND BRCA1 positive, I would be wondering how is it possible that I got such an aggressive cancer at 32. Or I might have tried different therapies that wouldn’t have worked. At least I know now, given my status, that these are the steps I’m going to take and I can see the stats on survival if I take those steps. It gives you a little bit of your control back. It makes you feel like you can do something to become healthy again.”
Dani having an ultrasound to check on her chemo port to ensure she doesn't have blood clots.
There are other milestones in her journey Dani highlights. “The night before my double mastectomy I held my breasts and sort of mourned their loss. I didn’t know what it would feel like not to have them. I also had 28 embryos frozen. I will have to consider removing my ovaries, uterus and fallopian tubes by the time I'm 40.  Being BRCA1 positive brings with it the risk of ovarian cancer and there’s no test for ovarian cancer." She pauses here before she emphasizes: "There's no test for it. I almost lost my shit when I learned that.”

Before starting chemotherapy, Dani decided to own the hair loss that comes with chemo and celebrate it. She got a bunch of her friends together to honor the milestone and raised money to help other women going through this process afford fertility treatments. (Check out Team Maggie for a Cure). 
Dani getting her head shaved at a bar in Denver, sponsored by Ollie's barbershop.
She also made a decision to be honest with her family, especially her four year old daughter, Sofia. “Kids hear things and when there are gaps in their understanding, they fill them with even scarier things.” She went to therapy. Friends shared wonderful books like My Mommy has Cancer and Nowhere Hair. “Sofia took it really well. I explained to her that I was sick in a way that she can’t get what I have and that it will take a long time before I get better. I told her that some days will seem normal and other days won’t; there will be days that I can’t do anything and the medicine will make my hair fall out. I loved her reaction to that. Kids don’t carry the same baggage that we do. She saw me wear a wig a few times and told me she liked my bald head better.” 
Beauties
This November, before Thanksgiving, Dani had her last chemo treatment, and in a few weeks she will have her chemo port removed. She remarked to me about the strange ways the world works, “You know, the miscarriage devastated me. But if I had been pregnant or breastfeeding, I probably wouldn’t have reacted as immediately to a small lump. I would have assumed that my breasts were changing because of the hormones or because a duct was clogged or a million other reasons that could provide a plausible reason to delay getting something checked out. But I didn’t.” 

So often we hear of the horror stories of a cancer prognosis – late stage diagnosis, poor treatment options, and grim survival rates. Dani's story highlights what our medical system can look like at its best: vigilant, empowered patients along with doctors who listen and take action quickly. Since Dani's cancer was found early, and her treatment plan was catered to her specific type of cancer, her prognosis is hopeful, with less than a 10% change of recurrence.

We celebrate you Dani, and we are with you on this good fight.
Jane Fam, Holiday season brings with it a complex set of emotions. It’s both a happy and sad time, and sometimes both simultaneously. Dani's story is no different. All of our stories are full of joy, loss, difficult decisions and preciously perfect moments. We hope you take care of yourselves this month and we look forward to seeing you in the New Year. 

Warmly,
Ridhi
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Stephen Gire