In August of 2021, I was 23 years old and ready to start the next chapter of my life: law school. Weeks before my big move to another state, I was diagnosed with Hodgkin lymphoma. I was so sure the doctors had made a mistake. Were my lymph nodes really as big as the scans showed (I mean come on, 8 times the size they should be)? What if the inflammation was from COVID, or the flu, or any other possible alternative? What if I just… ignored this news for a while and continued on with my life?
Instead of law school, I was set to start six months of ABVD chemotherapy. I remember walking through the house to find my mom, who took one look at my face and knew what I had just learned. I don’t remember much from that day, except asking, “Mom, will chemotherapy make me lose my hair?”
Of course, getting rid of the cancer was the priority. But like many others who are diagnosed, the prospect of losing my hair was just as scary as the cancer itself. I am stubborn by nature, and if I was going to go through this, I wanted to have control over when someone learned I had cancer. I became a google doctor and came across cold cap therapy. Now, my family has had its fair share (or, really, a bit too generous of a share) of cancer. And none of us had heard about cold cap therapy. I figured, well, it is probably a scam, but worth talking to my treatment team about.
For those, like myself, who have not heard of cold cap therapy, the technology is rather simple. You can think of cold caps as sub-zero ice packs that sit on top of your scalp to cause scalp hypothermia. The cold caps cool the scalp for a period of time before, during, and after each chemotherapy session to constrict the user’s hair follicles to reduce blood flow into the scalp, and in turn, reduce chemotherapy flow into the hair follicles.
My oncology team had never worked with cold cap therapy before. The first posts that often come up when you search ‘lymphoma + cold caps’ are big letters saying ‘Danger! These should not be used with blood cancers!’ However, my team did additional research and determined there wasn’t a safety risk for me. Many oncologists are becoming more knowledgeable about cold caps and are prescribing them in greater numbers to certain lymphoma patients, especially Hodgkin, as it behaves similarly to a solid tumor (note: cold cap therapy was originally FDA approved for breast cancer). However, my team thought that paying for the caps would likely be a waste of money.
How glad we all were that they were very, very wrong. Fast forward to the end of treatment, I didn’t noticeably lose any hair. I often tell people that chemotherapy is what saved my life, but cold cap therapy is what gave me some control over the disease. My mom and I knew that saving my hair made the biggest difference in my mental, physical, and spiritual health during and after treatment. Having cancer is time consuming and expensive, and many people do not have the resources for anything beyond lifesaving medications and hospital bills.
Following treatment, we founded Carefree Capping, a 501(c)(3) nonprofit based in Southeast Michigan. Our mission is twofold. First, we subsidize cold cap therapy for Hodgkin lymphoma patients in Michigan. Cold cap therapy costs anywhere between $1,500 and $3,500 for a standard lymphoma treatment of 6 months. Second, we work to increase accessibility of cold cap therapy by spreading awareness about the technology. We now have a growing volunteer team who are all dedicated to the cause.
We hope to connect with oncologists and nurses, patients, survivors, support groups, caregivers, and beyond to foster a community where we can continue to grow our organization and expand our outreach.
For ways to connect with us, you can: Email us at carefreecapping@gmail.com
Check out our website (and donate) at www.carefreecapping.com
Follow us on Instagram or Facebook @carefreecapping
Sending you all love and strength, and I hope that we connect soon,
Rachel Mount