Rachel Kayla of Paxman Scalp Cooling: I Survived Cancer and Here Is How I Did It
An Interview With Savio P. Clemente
Give yourself some grace — There is no right or wrong way to be a cancer patient. You can’t do it wrong and just because another cancer patient did something doesn’t mean that’s right for you. I worked all through treatment but I took my business down to one third of what it normally would be. If I needed to sleep, I slept. If I need to work, I worked. I listened to my body and did what I needed. I tried very hard not to compare what I did to what other patients did.
Cancer is a horrible and terrifying disease. Yet millions of people have beaten the odds and beat cancer. Authority Magazine started a new series called “I Survived Cancer and Here Is How I Did It”. In this interview series, we are talking to cancer survivors to share their stories, in order to offer hope and provide strength to people who are being impacted by cancer today. As a part of this interview series, I had the pleasure of interviewing Rachel Kayla.
Rachel Kayla is the Account Manager at Paxman Scalp Cooling where she oversees the Midwest location. The Paxman Scalp Cooling System is the world-leading hair loss prevention system for chemotherapy patients. It has been used by over 100,000 patients in 60 countries around the world and is responsible for helping patients to reduce chemotherapy-induced alopecia and retain normality whilst undergoing their treatment. In the US, there are currently over 430 hospitals in more than 41 states that have adopted the technology, ensuring that cancer patients across the country can access this important treatment in side effect management.
Thank you so much for joining us in this interview series! We really appreciate the courage it takes to publicly share your story. Before we start, our readers would love to “get to know you” a bit better. Can you tell us a bit about your background and your childhood backstory?
I’m the oldest child and grandchild on both sides of the family. In true oldest child fashion, I’m hyper-independent and a bit of an overachiever. We moved to Canton, Ohio from the Pittsburgh area in 1988 when I was about 12 years old. I ended up in the Columbus area after college graduation in 1999. I never intended to stay there long-term but the universe had different plans. I ended up living there for nearly 23 years. It was a good run but I was starting to feel the need for a change a few years ago.
For as long as my family can remember, I’ve loved the color purple and Prince. I asked my dad once which came first and he said that’s like asking if the chicken or the egg came first. He really doesn’t know. He was listening to Prince music when I was a toddler and I’ve been attracted to purple for just as long. I’ve now had purple hair for six years and live in Minneapolis (the home of my idol) both of these things play a role in my cancer journey.
Can you please give us your favorite “Life Lesson Quote”? Can you share how that was relevant to you in your life?
“Breakthrough and breakdown are two sides of the same coin. Embrace the breaks” -Jade Simmons, concert pianist and transformational speaker
I’ve found this to be true throughout my life. Whenever something seemingly disastrous happens or I go through a period of struggle, it’s usually followed by something transformational that leads me to a much better place. It reminds of the tower card in tarot. At first glance it appears to be a disaster…a tower burning and collapsing. However, it symbolizes a time of transformation. Sometimes you have to burn it all down (the breakdown) before you can make room for the next phase and rebuild something better (the breakthrough).
Getting breast cancer is a great example of this. I was self-employed and uninsured at the time. I was sure that this would destroy my life and all that I’d built. Instead, it led me to a knew career helping other cancer patients, first time home ownership and in a city that I only dreamed of living in. Having cancer was the breakdown that led to the breakthrough for me to a life that I didn’t know was possible but is better than the life I had before cancer.
Let’s now shift to the main part of our discussion about surviving cancer. Do you feel comfortable sharing with us the story surrounding how you found out that you had cancer?
Like most cancer survivors, you never forget how you found out. I remember years ago reading that you should schedule your annual mammogram around your birthday so you don’t forget which was exactly what I did in October 2020. I had skipped the prior two years because I was uninsured but I have no family history of breast or any other early cancers and I’m healthy so I wasn’t worried. I found a place that did it for a flat fee, got my mammogram and didn’t think anything of it. Then I got the call that they saw an abnormality and I’d need to come back for an ultrasound. I still didn’t think I needed to worry. When the radiologist suddenly came into my ultrasound and take over from the sonographer, then I knew something wasn’t okay.
At around 2 a.m. on Dec. 2, 2020, I got my biopsy results via MyChart. I saw the words “Invasive Ductal Carcinoma” and had to read them a few times before it sank in. Seeing that diagnosis associated with yourself is surreal. Cancer is something that happens to other people. You never expect it to happen to you. I especially didn’t expect to have breast cancer. I had just turned 44 and had no family history. It was surreal.
What was the scariest part of that event? What did you think was the worst thing that could happen to you?
I’m single and was self-employed at the time. I was also uninsured. The scariest part was trying to figure out how I was going to get through this alone. I was terrified that this would bankrupt me and cause financial devastation. I was afraid that I wouldn’t be able to work and pay for treatment that would save my life. Sadly, those concerns are justified and all to common for too many people in the US.
How did you react in the short term?
I read EVERYTHING. I’m a researcher by nature. I immediately looked for books about breast cancer and read the latest research. I relied heavily at BreastCancer.org at this point. I have a few friends who are breast cancer survivors and I spoke with them about their experiences. By the time I first met with my surgeon, I had questions ready and a lot of my decisions already made.
After the dust settled, what coping mechanisms did you use? What did you do to cope physically, mentally, emotionally, and spiritually?
I never ask for help but always give help to others. Early in the journey, I was speaking with my dad about how I wasn’t sure how I was going to afford and balance all of this. He said, “Rachel, you always have helped others. It’s now your turn to be helped. Let others help you.” That really hit home for me. He was right. I was surrounding with people who loved me that wanted to help and this was the time to let them help me. I’m so grateful for the rides, the gift cards for meals, and all the chemo supplies that friends got for me.
Continuing to work while I was in treatment was a big help for me too. I needed that not only to pay for my (newly acquired) insurance and treatment but it also allowed me to feel normal. Another think that helped me maintain a sense of normalcy was doing scalp cooling using the Paxman system while I was going through chemo. That allowed me to keep about 70% of my hair so that I “sick” person when I looked in the mirror. I was able to hide the little hair loss I had with scarves and headbands so that I could move through the world without having my appearance announcing to strangers that I had cancer.
I also learned to slow down. I believe getting cancer was a lesson from the universe. I’m a workaholic. I always have been. This was a lesson for me in slowing down and taking care of myself. I’ll take care of everyone else but not myself. I had to learn to slow down and just rest. People will understand and the world won’t end if I take a day or two off.
Is there a particular person you are grateful towards who helped you learn to cope and heal? Can you share a story about that?
I found a ton of support in the Paxman Facebook group. Patients go there to share their scalp cooling experiences as well as scalp cooling tips and tricks. However, it’s turned into so much more. We cheer each other on. We share all our treatment experiences and help each other get through them. After I finished active treatment, I stopped following the group because I thought I didn’t need to be there anymore. I lasted just a couple of weeks before I started missing all the support and positivity. Some cancer groups can be depressing but this group is so supportive and uplifting. I continue to be an active member to this day and I hope I’m giving hope to the new members just like I received when I first joined.
I ended up finding my “breast friend”, Nicole in that group, as well. She and I were diagnosed a few weeks apart and had almost identical treatment plans. We also have very similar personalities and beliefs. We would text throughout chemo to check up on each other and make sure everything was okay. We shared the joy and the pain of the whole process with each other. We have a very special friendship that will be there forever. She’s based in Minneapolis and was trying to find ways to get me to move here. Little did with both know that Paxman, who brought us together virtually, would eventually bring us together in real life.
In my own cancer struggle, I sometimes used the idea of embodiment to help me cope. Let’s take a minute to look at cancer from an embodiment perspective. If your cancer had a message for you, what do you think it would want or say?
This is such an interesting question. I’ve never thought of my cancer in that way. I did call surgery day “eviction day”. As soon as I evicted that tumor, I (and my surgeon) considered myself cancer free. Everything else (chemo…radiation…Tamoxifen) is to make sure that it can’t take up residence in my body again. I guess, for me, it’s not so much what my cancer would say to me so much as what I would say to it and that’s, “Get the f@#% out!”
What did you learn about yourself from this very difficult experience? How has cancer shaped your worldview? What has it taught you that you might never have considered before? Can you please explain with a story or example?
I learned that I’ve had a bigger impact on other people than I ever could have imagined. Because of that, they all rallied around me to help and support me. People that I hadn’t had contact with in years jumped in and helped me in so many ways. They know who they are and I hope they read this so they know how grateful I am. When you live a life of showing and sharing love with others, that love will be returned to you tenfold when you need it the most and least expect it.
How have you used your experience to bring goodness to the world?
Scalp cooling during chemo made my treatment significantly less traumatic than it could have been otherwise. It was so impactful that I left my real estate business, relocated to Minneapolis and I now work for Paxman Scalp Cooling as an account manager. I help support cancer centers who offer Paxman scalp cooling to their patients. I also help their patients as they go through scalp cooling. Hair loss is one of the most devastating side effects of cancer treatment and it doesn’t have to be. I’m so grateful to Paxman and I want to pay it forward by supporting cancer centers and patients with scalp cooling. I want all cancer patients to have the same options and choices that I had. I hope that someday this will be standard of care like it is in other parts of the world and I’m going to do everything in my power to help get us there.
What are a few of the biggest misconceptions and myths out there about fighting cancer that you would like to dispel?
My breast friend, Nicole, and I would talk about this at length. Based on movies and TV depictions of cancer treatment, everyone should be a bald bag of skin and bones. Depictions of cancer patients in the media make you think it’s easy to see when someone is going through cancer treatment. You can’t tell by looking at someone if they have cancer. Some chemo regimens cause fluid retention and bloating. I gained ten pounds and one pant size. Not everyone looses their hair and we’re not all bedridden during chemo. Every cancer is individual and so is every treatment. Cancer treatment sucks but it’s not what you see in the movies.
Also, the trauma lasts long after active treatment is done. For example, breast cancer patients often have to take medications for 5–10 years after everything else is done that can impact our quality of life. A lot of people think that just because treatment is done, you can get back to normal but your normal is never the same again. There is a grieving process for the life thought you would have before cancer. Life post-cancer is different and it can take survivors awhile to get to that new normal. There’s a mental battle that continues after the physical battle is done.
Fantastic. Here is the main question of our interview. Based on your experiences and knowledge, what advice would you give to others who have recently been diagnosed with cancer? What are your “5 Things You Need To Beat Cancer? Please share a story or example for each.
Accept and ask for help — I was and am single. I’m used to just doing things for myself. I had to learn to accept and ask for help from others. When I found out that chemo was being added to my treatment plan, I was overwhelmed and unprepared. I wasn’t supposed to need chemo and I wasn’t prepared for it start in less than a week. I found a list of things that are good to have when you’re going through chemo and I made an Amazon wish list with that. I shared it on Facebook and within two days, I had everything I needed and then some. These weren’t expensive items but it saved me a tremendous amount of time and money. I had everything I needed before my first infusion.
Give yourself some grace — There is no right or wrong way to be a cancer patient. You can’t do it wrong and just because another cancer patient did something doesn’t mean that’s right for you. I worked all through treatment but I took my business down to one third of what it normally would be. If I needed to sleep, I slept. If I need to work, I worked. I listened to my body and did what I needed. I tried very hard not to compare what I did to what other patients did.
Feel all the feels — Cancer is traumatic. You’re absolutely allowed to feel mad, sad, tired, scared, frustrated, happy and anything else. In fact, you’ll feel all those things and more. I knew that I wasn’t going to die but this situation sucked so if I needed a good cry, I cried. I let myself feel whatever I was feeling. I recognized it. I sat with it and then, I let it go and moved on. There’s no place for toxic positivity in cancer treatment. No one can be positive all the time. Just allow yourself to feel but don’t let any one feeling dominate you.
Be your biggest advocate — I was very fortunate that my team always treated me as the expert of my own body. They always deferred to me as the final decision maker and not a single doctor ever made me feel stupid for the questions I asked and the decisions that I made. That should be the experience for EVERY cancer patient without exception but I have found that it’s not. If you’re not receiving that kind of care, get a second and even third opinion. You know your body best. Doctors are human too and can make mistakes. Always advocate for yourself.
Laughter really is the best medicine — One of the things that got me through was having an off-beat sense of humor. I’m not Christian so blessings, Bible verses and prayers don’t do much for me. Laughter can heal though. My only cancer t-shirt says “Cancer touched my boob so I kicked it’s a$$.” I also follow the @thecancerpatient on Instagram. It’s humor only other cancer patients will understand but it made me laugh at the stuff that might otherwise make you cry. For example, it’s where I learned to call chemo a “chemical Brazilian.” Keep laughing when you can. It will help.
You are a person of great influence. If you could inspire a movement that would bring the most amount of good to the greatest amount of people, what would that be?
Love…it’s that simple. Just remember to spread love in the world. I don’t think it can be much easier than that.
We are very blessed that some very prominent names in Business, VC funding, Sports, and Entertainment read this column. Is there a person in the world, or in the US with whom you would love to have a private breakfast or lunch, and why? He or she might just see this if we tag them. :-)
I’d love to sit down with Lizzo. She’s putting out so much love into the world and I want to thank her for that. She’s helping to make the world a better place and laying the groundwork for the next generation to love themselves and each other. I think her reality show is quite possibly the first one ever that discouraged drama and encouraged camaraderie. That’s the example we should be setting for younger generations. She’s breaking the mold and taking concrete actions to make the world a better place.
Thank you so much for sharing these important insights. We wish you continued success and good health!
