- Diagnosis. The beginning of summer of 2017 I felt the lump that would change my life, I knew what it was even before I heard the words. Cancer of so many types runs heavily in my mother's side of the family, so when I felt the lump I paused but kept going because it was the beginning of summer and I couldn't face the music just yet.
After some travelling done in August of 2017, I finally slowed down enough to get myself into the only doctor I went to regularly-ish and that was my OBGYN. At that appointment I told her that I had felt the lump months before but only until it started to grow did I get scared enough to check it out, I explained my family history and how I had already lost two family members to breast cancer and she told me so confidently that it was a cyst and nothing to worry about. Luckily she requested a mammogram anyway, and it seemed that the first week of all of this is what seemed to move quickly before there were so many delays before starting treatment, which now I kind of see as a blessing in disguise because it allowed me to make more arrangements for my cold capping.
Once diagnosed I went in for my "chemo teach" to learn about my regimen which was TCHP for 6 cycles every 3 weeks. At this appointment, I met a nurse, who I will never forget because she seemed very cold and desensitized to everything. My head was still spinning from learning of my diagnosis and that I would need chemo, to begin with that I wasn't in the position to handle someone with such negativity, but there I was. I had briefly heard about cold capping in passing at one of my previous appointments but knew absolutely nothing about it, so I asked about it at this chemo teach. Once I uttered the words "cold caps" she scoffed at me and said "Sweetie, they don't even work. As a matter of fact, there is someone here getting an infusion right now that they didn't work for and I'll introduce you to her". I remember at that very moment I felt like I had gotten punched in the stomach because this was all just too much, and the small sliver of hope that I had to try and make this all more tolerable this nurse had just taken away.
I let her finished her teach with me and let the counselor at the centre know right after that meeting that I was not happy with how she was so negative and what she told me about the cold caps. She immediately apologized and shared with me the name of a woman that had great success with caps and was willing to speak with other women that were interested in them.
This woman met me with no hesitation and sat with my family and me for over two hours to go over how they worked, what were some things she learned along the way, and that she was also met with negativity at this centre and to just blow them off. It was then that I noticed that because these caps are not "the norm" they aren't always welcomed with open arms or positivity.
My hair has been one of my favorite things for as long as I can remember. I've dyed it all kinds of colors, chopped it, had it long, kept in curls, you name it, I've done it. It to me was as much a part of my identity as my name and eye color, and the thought of having a chance to save it and keep my life as close as possible to what it was before diagnosis was and still is very important to me.
I'm not kidding you when I tell you that had it not been for the counselor at that centre, I think that my path in all of this would have gone very differently.
- My motivation for starting the cold cappers group was because I felt so hopeless when it came to knowledge on capping and I didn't want to accept that. There is so much information when it comes to the disease that we are fighting on blogs, message boards, groups and the like but I was hitting a lot of dead ends when it came to best techniques and information on capping.
I was already part of a handful of online cancer support groups and because there was such a small number of women cold capping within those groups I found it difficult to ask questions about it, so I figured "Hey, maybe I can start my own group and see how far I can take it". It initially began with only 6 members in late January of 2018, those of which I met through Facebook support groups and I knew that even with the small number of women in the group to start, we would be able to share really useful information that would help us in all of this. I pushed the group a few times using Instagram in hopes that it would reach more cappers and now 9 months later we are at over 650 members, worldwide. It blows my mind every time I think about it because I was really hoping to make an impact on even just a few people and I get messages all the time telling me what an impact the group has made in their lives and how its connected them with not only information and resources that are helpful but also connects them with other wonderful women that understand the struggles we've been met with, and that means so much to me.
- My overall experience with cold capping I would say is good, I mean I definitely continue to recommend it, but personally wish my outcome would have been as successful as others. I had a lot of hair loss due to several complications with chemo treatments that led to hospitalizations that were very rough on my hair and also user error, this, of course, being prior to being able to connect with others. It was definitely a love/hate for me, I associate it with chemo of course so it has it's dark memories for me, but I am absolutely grateful for it. I wish that I would have known some of the things I had learned along the way a lot sooner, which is why I'm at least so proud of the group because it allows for those of us that have been through the ringer to share these words of wisdom in hopes that all future cappers will have the best success.
- I am 30 years old (diagnosed at 29), and I live in Austin, TX originally from El Paso, TX. I have happily called Austin my home for almost 8 years now and I live here with husband, 4 dogs and 2 cats. I have always been pretty active, I love to travel and experience new things. Prior to diagnosis I was pursuing a degree at the University of Texas at El Paso and have always worked in and around the real estate industry but I am now hoping to further grow my group and help other cancer patients and cold cappers full time because it is now what I feel so passionately about.