My cancer story | metastatic triple negative breast cancer
MY BREAST CANCER STORY
Diagnosed with Cancer
As we came out of Covid lockdown I was unsure when my last mammogram was. After making a call it had been 2 years, so I got an appointment right away.
The appointment was standard until I saw the technician’s face. She compared the last scan and there was something there that wasn’t prior. At this point, I knew, I had cancer (not official yet).
Ultrasound quickly moved to having a biopsy. Two days later my pathology report hit My Chart.
Diagnosis: DCIS, Triple Negative (only 10% of women get), Stage 1, Grade 3
FUN FACT: We named the cancer “Toby”, and 24 hours before surgery I served him an eviction letter.
Bilateral (double) Mastectomy (DMX)
I always knew if I got breast cancer I’d have a double mastectomy with NO reconstruction (going flat). That’s exactly what I did. Triple-negative is hard to treat because you don’t know what’s “feeding” the tumor.
90% of women diagnosed with breast cancer know the tumor is being fed by hormones. Part of the treatment is hormone blockers to eliminate cancer “food”.
Since my DMX I’ve become an advocate for Aesthetic Flat Closure (aka no reconstruction). It’s not offered to all women as an option. Some professionals/society believe women would always want to have breasts regardless of additional surgeries and possibly be rejected in the end.
I’m a part of a “flattie” group of women, and I’ve never found a more loving and accepting group of individuals.
Chemotherapy Infusions
Originally my oncologist wanted me to start with chemo and end with surgery. I felt very strongly about doing surgery first, and my team of doctors accepted that. In doing so they found no signs of cancer in my lymph nodes and shifted my chemo plan.
The original plan was 8 rounds of chemo: 4 rounds of Adriamycin and Cytoxan . 4 rounds of Taxol ( also called the red devil). The day after the chemo infusions I’d go in for a Neulasta steroid injection.
The revised plan was 4 rounds of chemo: 4 rounds of Cytoxan & Taxotere (a cousin to Taxol) every 3 weeks. The day after the chemo infusions I’d go in for a Neulasta injection.
The Neulasta injections were worse than chemo IMO. As it went through your system I’d get shooting electricity like zaps fire through my spinal cord.
chest Infection
The downside to doing surgery before chemo. I ended up with a horrible breast infection. Chemo was killing good and bad cells leaving my body no way to heal.
There were a few times the infection neared sepsis, but adding antibiotics to my medication list kept it at bay.
With that said, I had several open holes along my incision until my last surgery.
Infection is fairly common. It makes perfect sense if chemo is busy killing off good/bad cells.
Our spare bathroom became my wound care station, and where I’d take all my showers for a few months. Man did showers feel SO good.
Final Surgery
This marked the final step in my treatment journey.
The surgery plan was to remove my chemo port, revise what they call a dog ear on my left side, and completely reopen and close me on the infected side.
Come to find out the side I had the infection on would have never healed without surgery. Opening completely up required me to have a drain once again. If you know anyone who has had drains they will tell you they are the pits.
At this point, all that was left to do was heal from surgery & chemo.
This is the point when it all sets in. You just kicked cancers A$$. Ironically this can be the hardest time for women. Most people see it as you being “done”. Mentally this is when we need the most support.
Warrior Women Portraits Created
As a photographer, I wanted to give back to this community in some way. I didn’t want to do something that was already being done, so I put on my thinking cap.
What was important:
one-year anniversary | Chest tattoo
Exactly one year to the day of my double mastectomy, I reclaimed my body with a chest tattoo.
It was a no-brainer to have Alice, the owner of Wonderland Tattoo, do the piece. I’ve wanted to work with her for years, and this was too important to go to just anyone.
The piece took two full-day appointments and one half-day. Yes, it hurt! Yes, I’d do it again.
just like that – metastatic to the lungs
Once you’ve had a cancer diagnosis of any kind, you live in perpetual worry, waiting for the big bad to jump out when you least expect it. I went the aggressive treatment route to ensure “Toby” would never return. We underestimated his determination!
My voice started to get hoarse at the end of 2023. We did several tests to rule out all the scary stuff.
What now?!?! Now I fight for my life, and quite literally. I quickly had a chemo port installation scheduled, and off to the races we went. Taxol every week for three weeks and then one week off (this equals 1 round). Once the twelve infusions (4 rounds) are complete, we’ll rescan to see how the tumors are responding. That should be Dec 2024. We’re manifesting the crap out of Dec!
I’ll do another 12 infusions if the tumor(s) is still present.
While I will always be considered having cancer, I’d love nothing more than to get to a NED (no evidence of disease) status.
Chemotherapy Infusions | take two
Originally my oncologist wanted me to start with chemo and end with surgery. I felt very strongly about doing surgery first, and my team of doctors accepted that. In doing so they found no signs of cancer in my lymph nodes and shifted my chemo plan.
I feel it in my soul that “Warrior Women Portraits” will be my life legacy!
