I am so grateful for your time and interest in my story and it’s been wonderful being able to share my journey with you. Somewhere along the way, Paxman found my entry on coldcapping and asked me to become one of their Pioneers, by sharing my story on their website for prospective patients. I agreed, of course, as it’s been a goal of mine to encourage women in similar situations to take some control back from this awful disease. This is what I wrote….
After a relaxing week away in Cape Cod with both of our families, my fiancé, Patrick, and I came home to take our engagement pictures. My skin was darker, my hair blonder and salt water does wonders to my sensitive skin. I felt and looked my best which is why I was not even a little concerned when I found a lump on my left breast later that week.
Patrick and I welcomed our crazy, red head, Alexa the previous winter and after months of breastfeeding I was used to my breasts feeling different. Still, I went to get it checked out and there I was reassured by a familiar staff that it was most likely a blocked milk duct, but was asked to do an ultrasound to confirm. Eager to put my fiancé (and myself) at ease about this lump I scheduled the ultra sound for later in the day. While lying on the cold table, the ultrasound technician excused herself and left the room in a hurry. I told myself she must be new and confused about the equipment. She eventually returned with a radiologist who insisted on doing a biopsy right away- just to further confirm it was nothing, I thought. Despite being nervous of needles I figured I was already there so I might as well get this whole ordeal over with.
Days later I got a call at work from an unfamiliar number. I didn’t answer but minutes later I noticed a voicemail. It was a general surgeon informing me that they had some concerns and I needed to meet with him along with 3 other doctors I have never heard of. He ended with an urgent “please call me back right away and ask my secretary to interrupt me if I’m with a patient.” I called back and tried convincing this urgent man that today was not a good day to leave work but he persisted and so I left. When I got to his office he had set up more appointments— one for genetic testing, one with an oncologist and one with a radiation oncologist. I knew ‘—ologist’ anything meant cancer but I couldn’t bring myself to accept or comprehend what all of this meant. I was in shock and desperately hoping to turn back time to that morning when I didn’t know any of this.
I was also annoyed having to cancel my hair appointment last minute and I couldn’t bring myself to tell the receptionist the truth. When Patrick and other family members texted me asking how my day was going, knowing that I would get the biopsy results that day, I tried ignoring the questions so I wouldn’t have to say the words I was being told. My lack of communication naturally raised a concern and within minutes I had to tell my family out loud that my giant lump was actually cancer. You never get to unsay those words and that afternoon I felt like my entire life was over. Not because I thought I would die…I actually didn’t… but I knew that my life would never be the same. This time I was right.
After meeting with the eager surgeon, I was to meet with a medical oncologist. Since Patrick was at work (and he works construction) I recruited my best friend, an emergency room nurse, to accompany me. Patrick’s dad also offered to come and brought along my future sister in law who also happens to also be an ER nurse. With my personal medical team by my side, I felt a weight lifted off my shoulders and I knew I could ask and refer any and all questions their way.
The kind oncologist informed us that the pathology results revealed the mass was 6cm and a high grade ER/PR negative DCIS with HER2 +. Given my age (26) and the rapid growth, I would need an MRI to confirm my diagnosis but I should consider my options for a lumpectomy vs. mastectomy or double mastectomy that evening. Though radiation was always a possibility chemotherapy was never mentioned. In hindsight I know that was done to protect me and allow me to deal with one thing at a time. It was only later on that I learned that being HER2+ is basically your chemo ticket.
Four biopsies and 2 MRI’s later, I sought a second opinion with which came a new set of doctors. I grew close with the ones that initially treated me and felt scared to meet my new team, one that wasn’t there that first Wednesday. To my surprise, however, my new team proved to be the most caring and compassionate group of individuals who treated me like I was family.
My new breast surgeon agreed with the previously advised course of treatment and after my first appointment, we put together a plan for my bilateral mastectomy.
I chose to have the more aggressive procedure out of fear of this ever coming back. The post-surgery pathology revealed lymph node involvement meaning the cancer traveled beyond the breast and into the armpit. This resulted in additional surgery to remove the remaining 23 lymph nodes, no feeling in the back of my left arm and more pathology news to go over. This is when this entire journey got rough.
With my wedding less than a year away, I was resentful of the timing of this awful disease. There’s never really a ‘good time’ for this, but my world truly fell apart when all the post- op conversations were interrupted with such awful words like chemotherapy and regimen, and a bunch of letters like TH ACTH ACT. That was all bad enough. But then the ball dropped even further. My doctor mentioned that I would lose my hair…did I hear that right? I thought to myself. She continued…after the initial 12 weeks of Paclitaxol (Taxol) I would continue coming every three weeks for Trastuzumab or Herceptin treatment to finish out a full year, but my hair would start regrowing. One whole year? This must be a joke. Envisioning myself and my upcoming wedding, I asked if my hair would grow back by then, I knew better but I was hoping to be wrong. She responded, “no, it will not be what it is today but you should have some regrowth by August.” “Just kill me already,” I thought because this news has already hurt more than any surgeries put together and then multiplied. I had been growing and treating my hair like a newborn for quite some time now and this stupid disease was going to take that too?
“I know, you can coldcap!” my oncologist said, and the hope in her voice caught my attention, which was to her advantage because at this point I had been sobbing loud enough to block out further depressing information. “You just have to start after October 19th.” She explained that Dana Farber Cancer Institute is implementing a new trial with Paxman Coldcaps. She added that this is very new and she doesn’t have much information but to check in with the receptionist and come back for a fitting. I didn’t care how little detail I was given; I decided in that moment that I was going to coldcap and I was going to save my hair, even if I were the only person in this trial that did.
“Ignorance is bliss” they say, and it was true in my case. From that point forward and even before my fitting, anytime someone pitied my case I had my reply. “Well, there’s this new coldcapping therapy that will allow me to save my hair so that’s great.” People didn’t know much about it and neither did I, but it saved me a lot of tears and conversation. So even then I considered the coldcap to be my superhero!
After my fitting I was told I would get a call later that day to go over the payment and shipping information. After answering all my questions and processing the payment I felt a sense of relief. Yes, this blows, but at least I can get this treatment, save my hair, and soon I will be married to my best friend and we can close this bad chapter and start anew. The next day I anxiously awaited a FEDEX truck so I could try it on be prepared for the following day—my first chemo. Mid-day I received a call from outside the US and a Paxman representative informed me that due to the American holiday (Thanksgiving), my cap would not arrive today. She said they would have a cap at my treatment center and assured me everything would be okay. I didn’t trust it so I called DFCI and asked them if they had extra coldcaps. The response left me defeated as they did not seem to know what the heck I was talking about. I would not get chemo this week, I told them, unless I did it with a cap. I realize this was a bit dramatic, but I didn’t want them blindsided by my plan the following day. As I settled in for chemo, I explained how I did not have a cap and they should probably hold off on my premeds until we have one. Suddenly, a nice woman with a Paxman badge greeted me. “Hi, you must be Kasha, are you ready to get started? I am here so I am happy to go over every little detail with you.” We went into the bathroom and were followed by half a dozen nurses who were all learning this application with us.
I was one of the first to start scalpcooling with Paxman and the first one to successfully finish. I am still undergoing treatment every three weeks, and it is both inspiring and heartwarming to see women with hair hanging onto their Paxman kits. If I find it appropriate, I try to encourage the women I see and let them know it does work. With a proud smile, I tell them, I did it, and I am so glad I did.
With each passing week I babied my hair with few washes, minimum products and zero styling. I hated how greasy and stringy it looked but rejoiced that I had dirty hair to complain about. I didn’t wear hats, I didn’t put it up, I washed it ever so gently and used a wide tooth comb brushing it from the bottom up. I created a coldcapping book of conduct that is available on my personal blog. Even though the weeks seemed to go on forever, and my treatments ran very long, I would do it again for twice the amount of time knowing I would save most of my hair. I saved about 60%, and if it wasn’t for my pale skin and numerous skin rashes no one would know I was in treatment. Six months later, on my wedding day, as I looked in the mirror and saw myself stronger and healthier, I was not reminded of my past year. When I walked down the aisle to my smiling and very handsome groom, I was overwhelmed by the love and dedication he has shown me throughout this process. I am forever thankful to Paxman and my coldcap—not only for allowing me to continue fighting, but most of all for ensuring my wedding day was as I had always envisioned it would be. Unlike all the other times, cancer didn’t steal the show…our love did.