The Empowered Family: Cari’s Story
“And that’s where the cancer is….”. These six simple words, said so cavalier, tore my world apart and my life hasn’t been the same since they were uttered two years ago. It was July 2020 and I was laying in a darkened room while a doctor examined mysterious subcutaneous bumps via ultrasound. I felt my face flush and my lips and fingers began to tingle. The doctor went on to show me two large masses and an abnormal lymph node. I’m not really sure what he said next… my mind was a whirlwind of thoughts, but mostly I thought… why? And better yet, how?? I had had a mammogram and ultrasound six months prior and there was nary a shadow let alone a large 7cm mass yet here I was not even a year later with what everyone was one hundred percent sure it was a malignant tumor.
I left the imaging place with instructions to return the next day to get a biopsy as soon as possible. I sat in my car and cried. I came home and hugged my two little boys who were 8 and 2 at the time and imagined how their lives would turn out if they grew up without a mama. How was it possible just the day before I was worrying about my statistics final??
The next few weeks would be a whirlwind of appointments and imaging. New faces, needles, and pokes and prodding. I would discover my cancer was invasive ductal carcinoma, HER2+, Estrogen positive. Unfortunately I would also learn that I not only had affected lymphnodes but two teeny tiny spots of cancer on my liver. I was officially upgraded to a stage 4 patient. I was devastated to realize I would never be cured. The most I could hope for would be long remission.
Less than three weeks later I was hooked up and ready for my first infusion, a deadly cocktail of Docetaxol, Carboplatin, herceptin and perjeta. I underwent 16weeks of the poison that was supposed to “fix me.” During this time I continued to work and go to college. I’d conduct speech therapy sessions from the infusion room. My oncologist managed my side effects well, but nothing could be done about the hair loss. That’s when my sister and my niece decided to take control and shave my head.
During the workup at one of the many appointments, my surgeon, an amazingly kind and gentle soul, Dr. Rebecca Viscusi offered genetic testing since I was so young and otherwise in fantastic health. I agreed to do the genetic panel not expecting much of anything to come back but wanting to know if maybe getting cancer wasn’t my fault. My genetic results came back as having a germline mutation in the P53 gene, a condition referred to as Li Fraumeni Syndrome. This gene is a tumor suppressor and ensures your body does not allow unhealthy cells to complete the mitotic cycle. In my case, my P53 genes don’t work right so my body allows damaged cells to reproduce. Women with P53 mutations have a 99% chance of developing cancer in their lifetime because of the already elevated risk of developing breast cancer.
So there I was… full of disease and also defective in some way. My first instinct was to check my kids. My geneticist, Rachel Adger, worked with my childrens’ pediatrician to get them tested. It was a 50/50 chance either way for both of them. Unfortunately my youngest son, who was 3 by this time, inherited the genetic mutation from me, but that is another story.
During my first PET scan, my medical oncologist, Dr. Aisha Ahmed, noticed a spot in my brain she was certain was not a metastasis of the breast cancer, but wasn’t sure what it was in general. Now that we knew I had LFS, any abnormality had to be taken seriously and she referred me to a neurosurgeon. Right away I clashed with the doctor and his staff. I will not mention his name, but I was not well taken care of, I was not treated with respect, and I was not taken seriously. It was at this point I decided to request a referral to Mayo Clinic and get a second opinion. I had the pleasure of working with an amazing surgeon by the name of Bernard Bendok. After numerous MRIs, a functional MRI, and a perfusion MRI we still weren’t sure what the mass was. It had not changed, but again, being the genetic anomaly I am, Dr. Bendok and I erred on the side of caution and decided to remove it and have it biopsied.
The pathology came back as a grade 3 astrocytoma that would require chemotherapy (a shortened and lower dose because I’m already at risk for leukemia) and proton therapy (not radiation because radiation is dangerous for people like me!) my insurance did not want to pay for. I did the proton therapy at Mayo Clinic with Dr. Terence Sio and his amazing team. The social workers and techs became not just part of my care team, but also friends. We listened to music together, we talked about our kids, and on my last day of treatment, we celebrated together. After the proton therapy I underwent 6 months of oral chemotherapy and as of March 2022 I am officially on maintenance therapy and surveillance.
During this entire time I have managed to continue working mostly full time, take care of my kids, graduate from college and get accepted into a master’s program. I wouldn’t say I’ve quite adapted to life as a chronic cancer patient but I have definitely accepted it. My infusion nurses are some of the best friends I have. As a “lifer” patient, we’ve gotten to know each other and by association, each other’s families. I have met amazing people during this experience: social workers, advocates, patients, doctors. Sometimes I still get a little discouraged or bummed out, knowing I will never put this behind me. Knowing that every single thing in my life has to revolve around a treatment regimen. Knowing that I will never sign the wall or ring the bell signaling the last chemotherapy treatment. But I have also realized the physical weight of this is heavy enough, I don’t need to add any mental weight to it.
I have also learned that it is so beyond important to not only trust who is in your corner or on your care team, but make sure they can and will advocate for you as needed. If you don’t have a doctor willing to do that, it’s a giant red flag. If that first neurosurgeon was the be-all end all opinion, I’d be dead right now. That leads me to the second thing I’ve learned:
I have learned that you must also advocate for yourself. Information is readily available to us by a simple click of the button. Be informed and be knowledgeable. You are the only one that has to live with the decisions made about your treatment.
I could give you a lot of crap about how I learned to appreciate the little things, and to cherish the “small moments” but let’s be real: that lasted about a month. That in itself was refreshing..it reminded me that no matter what my diagnosis was, I was still me.
I get nervous and unbearable anxiety when I have imaging or blood draws. The slightest jump in numbers sends me into a tailspin, and it will most likely be that way forever. I’m not saying that to make you feel bad, but to remind you that it’s ok to be scared but it’s not ok to let it consume you.