On the 5th November, I got engaged to the greatest man on earth - well at least to me. It was the happiest time of my life, but little did I know that a month later my happiness would turn into fear and my world would be turned upside down. Every year my fiancé Curt and I, both get the flu shot. This year, something was different with the shot. My lymph nodes in my neck swelled up and I had a lot of pressure on my neck. I decided to go to the doctor because it wasn’t getting any better. My doctor said it is probably just reactive lymph nodes, but it would be best to take a deeper look. I had an ultrasound and they discovered 4 large lymph nodes the size of walnuts. This led to a biopsy which lead to a CT scan. My biopsy came back suspicious for Hodgkin’s Lymphoma, but the CT scan showed that there were more lymph nodes throughout my body that were swollen, and I had 2 tumors in my spleen. On January 4th I was diagnosed with cancer but was not staged until January 12th. I had to have surgery to remove one lymph node, so they could take a deeper dive. I was then diagnosed with Hodgkin’s Lymphoma Classic Stage 3B. My treatment would be ABVD for 12 rounds every other week. Before I started chemo, I had to do fertility so it wasn’t until February 7th that I started chemotherapy at the Virginia Cancer Specialist Lansdowne, VA with Dr Sarma (who is an amazing human being).
It was one of my girlfriends who mentioned the cold cap to me as she had heard it from one of her co-workers. I started to Google and came up with a few options. I had long blonde hair at the time and one of my fears was losing my hair. I added the cold cap to my list of questions for the oncologist. When I spoke to Dr Sarma, he mentioned the Paxman Scalp Cooling System to me but said it’s been mainly used for breast cancer patients, but he would be fine with me using it for my cancer. Marcy, the head of nursing explained the system to me and I was sold. The goal was to keep at least half my hair! She explained that my chemo was pretty harsh but if I wanted to try that she would recommend buying 4 treatments at a time and this way if it didn’t work, I wouldn’t waste my money. Paxman was the best option for me as all I had to do was bring my cap and plug in. I didn’t use the Paxman Hub because my nurse handled the refills and cap ordering. I would get a call and I would put my credit card information into the system and ‘poof’, my token worked. During the first few experiences, I FROZE and shivered my way through my first few treatments.
I used to have long highlighted blonde hair. I told my hairdresser what I was about to do, and she mentioned that we get the hair as strong as we could which meant I had to kiss the blonde good bye. I also had to cut the long hair off and start off with a dark brown bob. I have never had dark hair so I had no clue how it would look or if I was going to like it. I wasn’t in love with it, but I knew it was for the best and it was only temporary.
If I had any advice for others it would be two words - ELECTRIC BLANKET. It was easier to take the cold when the rest of your body was warm. The same friend who recommended the cold cap bought me a chemo cozy fleece jacket that allows nurses to access your port while keeping your jacket on. I also wore a scarf and had a pillow to help my neck. I always felt like the chemo chairs never had enough support, but I am also short, so the chairs seemed to be built for a giant. It was worth it to keep my hair. Every time I would see my oncologist, he was always amazed how much hair I had. By treatment 7 I had lost all my eyebrows and most of my eyelashes, but I had a FULL head of hair. We also installed a hand wand in the shower, so I didn’t have to take cold showers to wash my hair. I just had to lean over the tub and use the wand to wash my hair. I also used sulphate-free shampoo and conditioner.
So far, I have a full head of hair. I have noticed since treatment 12 I am losing more but I think it’s because it is so hot outside and I am active outdoors and my scalp gets hot. I also have been to the pool and beach. This could also just be seasonal shedding, but I still have a lot of hair. I only felt like wearing a hat on days that my hair was greasy. I would only wash my hair every 3 days and sometimes 2 days if I was going out or had to be in the office. Amazingly, my hair actually grew while I was using Paxman and chemo and I had to get my hair cut. This weekend I am going to get my hair cut and coloured since treatment. I still will be using cold water.
I am extremely happy with scalp cooling and the Paxman Scalp Cooling System. The fact that no-one knew I was sick unless I told them was awesome. It gave me comfort that the world wasn’t staring at me, judging me and making me like a cancer patient. Instead I felt somewhat normal. I mean, it was just one less thing to stress about. I was able to focus on my health and not being bald. Having hair completely outweighed the cold chemo sessions. I am already recommending scalp cooling to others. People are reaching out to me saying their friends have been diagnosed and what was the system I used to keep my hair. I am so thankful that Virginia Cancer Specialist had this in their office.