IBC Metastasis into Leptomeningial Disease

09/28/22 Update:

After being declared “no evidence of disease, I resumed my life as normal (minus a breast and an increasingly thankful attitude). On September 28, I went to get into my car, and had a full tonic clinic seizure (I was not driving). After a trip to the ER, it was determined I had a lesion in my brain. I was sent home with no treatment plan or medication and only directions to follow up with my doctors. After reaching out to all of my physicians, no one would even meet with me for several weeks. Even my oncologist (whom I have never met in person) went on leaving for a month on vacation and left me with no one to speak to. After a week of increasing symptoms and another seizure, I returned to the ER to discover the lesion had grown. At this point we decided we would be leaving Kaiser at the end of the month and transferring to Stanford cancer center. This meant increase in insurance costs and expenses, but worth it for my care and life. Until then, I was not leaving their facility with out muiltiple tests done (that should have been done) and a treatment plan that starts immediately. The tone of Kaiser changed from several weeks out to a few days quickly. Once 11/1/22 hit and we started at Stanford, our lives have been a whirlwind. I was finally diagnosed with leptomeningial Disease- which Kaiser knew but refused to tell me, and was full prepared to let me die from- and started genetic testing instantly - which Kaiser also did not do. Stanford was almost instantly able to find a medication that will treat the cancer I have. This medication could and should have been administered from the very beginning of my treatment way back in December, 21 2021, however Kaiser did not follow up to do genetic testing despite my multiple attempts and was extremely firm in reminding me about how much things cost (the medication is costly). There are many, many other things we are battling as we are embarking on a a whole new journey, but I’m here, strong, and ready for the challenge. We still need a substantial amount of financial support as our insurance premiums and expenses are increasing, I am taking much more time off work this time, and have to invest into a variety of medical equipment and services for some mobility for rehabilitation needs. Of course, I’d like a small trailer to travel and see some things with my husband as an extra, but our primary focus is covering our medical and every day expenses first. Please read on about my initial journey and then circle back to see where we are now. We won’t let let this beat us!!!! 

12/01/22 Imagine the eve of your 39th birthday. You’re excited to go on a weekend getaway with your husband and have been planning the trip for quite a while. Then, your doctor calls and says, “I think you have breast cancer.” That dreaded C word; it’s the worst one. Unfortunately for Elisa, this is exactly what happened. Elisa noticed an small skin abnormality on her breast in August and had been working with her Primary Care Physician and other doctors to diagnose and treat what was thought to be an infection. After multiple medications and treatments it was that birthday weekend phone call that set everything into motion.

Elisa, a mother to 3 and wife to Clyde, is currently fighting (and kicking ass) stage 3 Inflammatory Breast Cancer. As with many cancer patients, she has an extensive treatment plan that consists of chemotherapy, a radical mastectomy, and radiation therapy before potential reconstructive surgery. She leads a healthy lifestyle with diet and exercise, and has been able to attend her morning work outs and continue her passionate work in education (in person and virtual) for a good portion of the week. However, some treatments are preventing this from happening as consistently as she’d like, but she is making the best of the situation by sharing her story on TikTok and Instagram (hike.lift.teach). Elisa maintains her vision that she will conquer cancer and one day be a wellness competitor on stage.

The mastectomy and reconstruction will require a minimum of twelve weeks off work. Her support person and husband, Clyde, will also need this time off to care for her as well as he is currently taking off one day per week to take her to treatments. These funds will be used primarily to offset lost wages in the upcoming months, provide meals and household services,  as well as to cover multiple treatment expenses otherwise not covered by medical insurance.