“On November 15, 2017 I looked at my partner, Jack, and told him I thought I had a clogged milk duct after discontinuing on-demand nursing our kid, Oak, 6 months prior. My milk had not dried up and Oak was still occasionally nursing if he’d need comfort. He looked at me with seriousness and said, ‘Ash, go get it checked out. What will it hurt?’ I kept examining, kept thinking I could put a warm compress on it and it’d get better. Some days I felt it and some days I couldn’t find it. I never thought 2/2/2018 would be a day I’d remember for the rest of my life. That day my midwife examined me and suggested I go for an ultrasound. On February 8th, I went for what I thought was just an ultrasound and was frustrated they needed to keep me longer than just a simple ultrasound; I had so much to do. That visit I had four ultrasounds and two mammograms-I’m telling you, I thought it was a clogged milk duct because milk shot out when they did the mammograms.
Those tests were terrifying. Not because the scans themselves scared me, but because they pulled other doctors in, they weren’t talking to me, and there was a concerned presence in the room. But they were all professional and explained they didn’t know what I was dealing with and their sweet staff scheduled me for a biopsy. The biopsy now, let me tell you, was one of the most uncomfortable situations I’ve ever experienced. Not because it hurt, but because as I laid on the table while they guided me through every step of the way, they went into the mass to collect cells and I immediately became hot, having heart palpitations and tears immediately started rolling down over my temple into my ears. I believe I’d experienced my very first panic attack. Since I could feel nothing and see nothing, the only thing I could think was they’d broken the energy barrier I’d put up to protect the mass. It took me 25 minutes to be able to sit up after that. On 2/15/2018, while enjoying a beer, slaw and sandwich at my friend’s pub, Clawson’s, with a loving friend, Erin, I received the terrifying phone call nobody ever wants to receive, ‘Are you in a safe place to talk…Your biopsy results came back and cancer ‘disease’ cells were present.’ After hanging up the phone, losing my breath and hearing Erin’s calm voice saying as she was holding my arms, ‘stay with me, Ashley. Stay right here with me.’ I was able to make it home safely to Jack and Oak.
The following day after very little sleep and several episodes of holding Jack and Oak screaming, crying in fear and painful disbelief, my surgeon called me, whom I hadn’t even met, and explained my perception of having a clogged milk duct was a diagnosis of a very rare disease. It’s called primary angiosarcoma that just so happened to be in my left breast. A sarcoma is a cancerous tumor of connective tissues. An angiosarcoma is a cancer of the cells which line the blood vessels. Breast angiosarcomas are relatively uncommon. Statistically, less than 10% of all angiosarcomas originate in the breast. In terms of breast cancers, angiosarcomas account for a very small percentage of cases; less than 0.05%. Angiosarcomas of the breast account for about 8% of all breast sarcomas. Once they develop, an angiosarcoma of the breast tends to grow and spread rather quickly. 10% to 12% of breast angiosarcomas may not have any symptoms. The average tumor size at time of diagnosis is often around 6 cm, and the average age at the time of diagnosis is 40 years old. Her calm voice explained that this was not breast cancer; she gently encouraged me not to google anything. That there is a primary and secondary angiosarcoma. The secondary is usually fatal. I had primary. My tumor measured at 1.9cm and I was 35-years-old. She explained those things were in my favor. She then told me her nurse would be calling for a surgery consult to discuss treatment options. All I could think was, am I going to die? What will Jack and Oak do if I’m gone? Can I please get this disease removed, like now? How do I tell Oak? What is the best option for treatment? How do I make a decision with very little evidence of what has worked historically with people?
The next three weeks were a blur. We kept living our life. Surrounded ourselves with new and old friends. We Waited. Waited some more. Got a beautiful book from our dear friend, Becca, that we read to Oak several times about there being a booboo in my breast and it having to fly away like a butterfly, so mommy could be healthy again. He responded well to it. I chose to have a single mastectomy without reconstruction. It’s 2018, prosthetic options are amazing. While we waited, our loving and supportive family and friends held a healing ceremony for me, held space for me, and planned ways to help my family and me after surgery and what other treatment would follow.
The night before my surgery, a lot of snuggles and conversations took place with our sweet kid and partner. Oak had a clear attachment to my breasts, as he had just stopped comfort nursing in September 2017. 3/9/2018 was here, and I went in for a single mastectomy to remove the disease. I was motivated, grateful for all the love, and ready for ‘angio to get the hell out.’ The surgery went well. I stayed one night in the hospital and walked around the unit over 30 times just hours after the surgery-I don’t sit still well and I did not want to wear the compressors that slowly squeeze your legs to prevent blood clots. I continued to look at myself topless and was filled with joy that I was no longer with disease. I immediately felt more beautiful than before. It didn’t bother me that I only had one breast-I was strong and disease free. I was a warrior. I was fighting this. After the pathology report, the size of the tumor (which measured 3.5cm-so it’s grown in just three weeks) and every bit of information was observed by three tumor boards (a group of several doctors-not just sarcoma specialists- gathering to discuss cases, treatment recommendations etc), on 3/27/2018 I found out I did not need further treatment-chemotherapy or radiation-because they got wide margins and no other disease cells were found. I was told, ‘we are glad you found it when you did’ and that I had to go in every three months for 2 years, then every 6 months for 2 years and then once a year for 6 years for alternating MRI and CT scans to ensure this aggressive and rare disease did not return. My mind would not stop. What caused this? Could I have done something differently? What if it comes back? I can’t believe it grew from 1.9cm to 3.5cm in such a short time. What if.
I agreed to have the genetic test on 4/9/2018 to provide me with some answers. At this time, I was tested for 29 disease genes to see if I could have inherited genes from either of my parents, as they both have disease in the family medical history. I had to wait 4 weeks for the results. Waiting is the worst part. But things kept moving. On 4/11/2018 I finally got my first prosthetic and running bra. That day I ran three miles and it was extremely magical. I’d waited for this day, as I was running at least 3-4 times per week to train for the half marathon prior to my diagnosis. I wasn’t sure if I was going to be able to run it or not. On 4/28/2018 I ran the Music City Half Marathon in 2:48, 7 weeks post op. That day was one of the most powerful days of my life-I ran 11 miles straight without stopping. That was all the adrenaline and strength built up from the love I had received through my journey. After that day, I kept running and kept waiting for results-patiently. On 5/7/2018 I learned no mutation had formed which meant I did not inherent any of the tested genes. In other words, I got this rare disease because of ‘bad luck’ explained the nurse practitioner in the genetic center-who was so kind and loving. This was a great thing for Oak and my sisters. For Oak, because I do not have the genes to have passed to him, and my sisters because there’s a smaller chance they got the genes from our parents. What a relief.
The one thing that had been challenging for me at this point, was that I was being placed in the ‘breast cancer’ category when people would talk to me-like the genetic testing staff, my physical therapist, social media support etc. My doctor warned me of this. I kept telling myself, I don’t have breast cancer. All of those people that have died quickly. I don’t fit in that category. I can’t identify with people in support circles. I can’t identify when people come at me with ‘my mom had breast cancer and’ stories. But where did I fit? I wanted more specific support. I wanted people that experienced similar things. Then I realized, I may not find this, as what I’m experiencing is extremely rare and the community is very small. So, I just kept pushing forward and waiting. Waiting for my next screening. At this time, I started having some mild back spasms. It wasn’t severe enough to talk to anyone and thought I was just balancing and grounding my new off centered body.
Finally, I had my three-month painless but terrifying MRI. Let me just tell you about an MRI. You lay on this narrow plank table that goes into a very small and narrow magnetic tube with the top of this said tube being just inches from your face. They put the other side of the camera on my chest, that is heavy and so bulky that it touches my chin causing me to feel very trapped. Then these loud pounding and high pitch noises sound for 45 minutes, in my case, and you must do everything in your power to disconnect from reality. I was offered a valium for these scans and I absolutely do not prefer medications. I did a natural child birth through using a method called hypnobabies, where you meditate to the point of hypnosis anesthesia-relax so deeply you manage the discomfort. Thanks to my beautiful friend, Kate, I have been highly successful with this method post labor, especially through this disease process. So, with my eyes closed with a mask on the entire time so I can’t see how tightly I’m in this tube, I’m able to release my mind and envision myself back on the pier in Seattle, WA with some of my favorite babes, Cayla, Lauren and Marie, dancing. That day, on 6/12/2018, after the pounding and intense scan, i met with my sarcoma oncoloogist and after a smile when she walked in the room, we learned I was still disease free. We cheered to three more months. It was like I was living my life in 3-month increments. I kept running. Back spasms started becoming more frequent.
On 9/25/2018 I had my 6-month CT scan (much easier than an MRI because you are not in a small tube, you can see out, however you do get the contrast that makes you feel like you are urinating on yourself) and I learned I was still disease free! We were so happy. Later that afternoon, I went to meet with my surgeon for my 6-month post-op appointment. She told me she fully supported me getting my other breast removed for symmetry-since my back had been spasming intensely for the past three months after minimal back pain since my back surgery over a decade ago. At this stage in my journey, I would have the right mastectomy.
At this time, I was feeling motivated to really become me. However this was when Oak really started getting impacted. He would wake up crying saying, ‘I don’t want your other milks to go away. I love milks so much.’ At this point, I’d discontinued wearing my prosthetic as it was heavy and hot and it was just more comfortable without it. So, I started letting Oak sleep with both my daily and running prosthetic. They became his comfort. This was a healthy redirection for us. They are now his ‘milks.’ He’s asked on several occasions to take these breast prosthetics for show and share at school because of how much he loves them. Jack and I discussed this a few times, talking about how we want him to feel free to bring what he wants and make those choices, however we felt it may cause other parents to be uncomfortable. We have not allowed him to do this.
On 10/6/2018, I found my community. I ran the Race to Cure Sarcoma 5k. This was my community.
Although I still have yet to meet someone with a breast angiosarcoma, I at least got to meet people that have been in the same space as me; felt completely alone with an extra level of fear due to not having a ton of research on our conditions. These people experienced the rare disease I have. At the race, I saw my sarcoma onc with her child and pup and she said something to me that resonated. As paraphrased, ‘The reason I work with sarcoma patients is largely because they are the underserved. And you, having it in your breast gets over powered by breast cancer.’ We need to find a cure for CANCER, no matter what kind. However, with sarcoma being so rare, with little research, I decided that day that I was going to raise awareness. People need to know about it. They need to know how it impacts people. And how it is different than breast cancer and just as important. To be very clear, I am absolutely not saying breast cancer needs to be out of the spotlight. I’m simply saying, ALL cancers need to be in the spot light. But sarcoma survivors must reach out to other survivors in the area. We must support each other. We must share our story. We are small, but we exist. I must share my journey to help someone else. I must share my journey to help me.
On 11/19/2018, I had my right mastectomy without reconstruction. The moment I woke from that surgery, walking 7,000 steps on the unit, breastlesss I was crying tears of comfort. A complete warrior in love with the new body I chose to embrace. Scars across the width of my chest and I was feeling the warmth.
Since being 6 weeks post op, I’ve been able to run again. This time, without 2 sports bras and very comfortable and free. I decided I am going to run the full country music marathon in April 2019. I ran my first five miles and I felt powerful again. No more back spasms. I’m centered. I’m me. I’m unstoppable. I will not let fear lead decisions because that is when I will miss out on beautiful and magical opportunities to make a difference and grow. As a social worker, I help the most vulnerable, the most underserved, as I was with the angiosarcoma in my breast. Thank you all for sharing in my journey, holding space for me and continuing to dance with the sun and moon for continued months of being disease free.”
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