When I was diagnosed with breast cancer, I was a busy 34-year-old wife and mother to 3 young children aged 15 months, 3 and 7 years old. I was a pediatric nurse at an acute care facility and loved my family, job and life. Shortly after finishing breastfeeding my daughter in November 2017, I slipped over my right chest and felt immediately that something didn’t feel right. I wanted to run to the emergency room and check it out, but as it was the weekend, I went to work and worked two 12-hour shifts instead. On Monday I got it checked out and from there it was a whirlwind of testing and waiting, during which all I could think about was my children and the fact that they needed their mother.
When I received the call that it was cancer, and that they caught it early, I was overwhelmed and emotional. I leaned on my husband, my family, and friends for support. Luckily, I live in the Boston area where I have access to world renowned hospitals, where I had treatment and a double mastectomy. The period after was very challenging as I had to not lift anything over 10lbs (including my 1 and 3-year-old children) for 5 weeks. I had an outpouring of support from family, friends, coworkers, and even strangers. When I followed up with my oncologist to see if I needed chemotherapy based on my results from the surgery it was the most excruciating time for me. I held my breath and when she said it was recommended, I just remember breaking down and thinking how am I going to do this? Of course, I thought of all the side effects and losing my hair. I already felt low losing my breasts and now I was going to lose my hair and eyebrows and eyelashes. All I could think about was that my kids would be worried about me, and how would they cope with my hair loss? I thought that everyone would stare at me and know that I am a cancer patient. That’s when in that appointment my oncologist mentioned how they recently got PAXMAN machines and I had the option of using the machine to basically cool my scalp and minimize hair loss. I didn’t even have to think about it, I said definitely and how do I do it? I asked when we would be starting chemotherapy expecting her to say in a few weeks, but instead she said the next day after. My head was spinning and I felt overwhelmed, but knowing that I could keep my hair and keep some sort of normalcy in my life felt like a small win especially as the hospital had just obtained the PAXMAN Scalp Cooling machines.
In February 2017 I started treatment and my PAXMAN cold capping journey. My husband and I had practiced a couple of times with the video the night before, but I still felt slightly unprepared and hoped I did it right. That first day I took my ibuprofen to help with any uncomfortable feeling that I might get with the cold capping and also an anti-anxiety pill that was prescribed. When it first went on, it just felt like an ice cream headache, I just would lie my head back and wait until it got a little numb. The most uncomfortable time was about the first 15 minutes and then it subsided, and I got used to it. I felt like the first time I did not wet my hair enough. I had VERY thick hair and felt like wetting it more would have allowed the cold to get down more into the follicles. I also felt like the fit could go down a little lower to the ear area, so you don’t lose as much there. It made for a long day as you had to pre-treat with the cold capping and then keep it on for 90 minutes after treatment, but I didn’t mind. The second time I wet my hair more. I did have my big hair loss around day 14-21 when my hair came out in droves and I thought that I would be bald in no time. It matted and I had to cut a little bit of it off that I couldn’t get untangled. I found hair EVERYWHERE in the house and on my clothes, but it subsided and what I was left with was about 50-70 % of my hair, with a couple of bald spots, which I could cover with my remaining hair. I also used hair fibers to make it look a little thicker. I would wash it every 3 to 4 days in cool water which was barely dripping out with sulfate/paraben free shampoo and conditioner. I used dry shampoo in between and slept on a silk pillowcase. I wore hats as it was winter and the in spring I wore some baseball hats when I felt I was having a bad hair day. I still felt good about my hair as you could see it past the hats. I did obtain a wig and wore it once, but never felt comfortable with it and would just rock my own hair instead. I brushed it with care with a wooden comb or the wet brush gently.
Near the end of treatment, I would braid it loosely to keep it contained and that worked well. In the middle of treatment, I was interviewed by the Boston Globe about the importance of this treatment being covered by insurance. It wasn’t covered for me and it would be very helpful for insurance to start covering it more. After treatment I continued with my washing every few days and at 6 weeks went to every day and warmer water. At 3 months post final chemo treatment I felt I had a lot of re-growth. At 5.5 months I got a cut and highlight, and it felt amazing. At 6 months post final treatment, I wash it regularly and treat it like my original hair. There is serious re-growth. I continue to get a lot of surprised looks when I tell people I recently had cancer and then explain how amazing cold capping is.
I felt like using cold capping was so worth it, even though I lost some hair, I kept most, and was able to keep some sort of normalcy for my children and myself! My regrowth has been fast and I’m so thankful I had PAXMAN scalp cooling as an option in my care. I will forever be grateful to PAXMAN.