Scalp Cooling and Cancer

Using a cold cap marks another first for me.

It’s my third time facing a treatment that has a strong (almost certain) chance of hair loss listed as a side effect. Total hair loss was a sure thing the first time I needed chemo. I went to the salon and had my head shaved. I had a wig but didn’t plan on wearing it. It didn’t look like me, feel like me, and it felt uncomfortable. I felt I retained my identity in a head wrap.

Cold caps at this time were being used in Germany but not in the U.S.

The second time where I was likely to experience hair loss was when new treatment followed oral capecitabine where my hair had already thinned considerably. My next line of treatment was likely to cause me to lose even more. This time around, I looked into cold caps. Some had been FDA approved and were being used in the U.S. I wanted to do it. The more I learned, the less of an option it became. Caps needed to be changed every twenty minutes. You needed someone to help change the caps. It needed to be worn before and after treatment – how long depended on the specific treatment you were receiving. I learned I would need to wear the cap a couple hours prior to and after treatment. I lived alone and I doubted I was going to find anyone who had full days to devote to cap changing. I also learned a person still lost up to half their hair. I didn’t have any more to lose since I already felt I had lost about half from my previous line of treatment. It was too much effort for something that maybe would sort of possibly work hopefully a little bit. I didn’t shave my head. I decided just to let hair fall out if it was going to. Most of it did with effects similar to if I had shaved it. I opted for a wig. I could avoid stares when out in public. It suited me. I felt like me. It was comfortable. I felt more normal and like myself.

I wigged for three years.

I finally had my hair back by last November. I love how it feels. It’s been a beautiful mess during the time quarantining during COVID. I found that ironic that I had all this lovely hair that no one ever saw and I couldn’t get done.

God sure has a sense of humor.

Then came the blow that I needed to change treatments and the best option would probably wipe out my hair for a third time. I didn’t want to see my hair go again. The emotions and tears attached to hair loss are intense. I decided to revisit the cold cap world and was somewhat relieved to learn there is now a machine at my treatment site provided by Paxman Scalp Cooling that a patient pays out of pocket to use. Please note my only connection to the company is as a customer using their product.

Everything is managed while you are on site receiving treatment. Nothing needs to happen at home. You are hooked up to this machine that pumps and keeps the cap cold. A nurse gets you ready, secures the cap, and runs the machine. You eventually take over and get ready on your own.

Why do I write I was only “somewhat” relieved? I still had to willingly freeze my head for a shot at keeping some hair and pay for the privilege of doing so. It still was probably going to thin, but I’d be starting with a full head of hair this time.

I would take a shot.

Cold caps or scalp cooling systems work when the scalp is cooled to reduce the amount of chemotherapy that reaches the hair follicles. The hope is hair may be less likely to fall out if less chemo gets there.

My head isn’t really frozen. The scalp is brought down from around 98.6°F to between 64°-72°F. It wasn’t an all over football Saturday in November kind of cold. It was more of an unnatural numbness of combined cold and heavy sensations that you could still feel. It does get better.

Time is broken down into four parts. There is a 30 minute pre cooling time to get your scalped cooled and ready to receive treatment. Doxil (doxorubicin liposomal) is what I’m getting and that takes 60 minutes to infuse. Then there is a 60 minute post cooling time period. Lastly, you thaw for about 15-20 minutes so hair isn’t ripped out of your head that is frozen to your inner cap when you remove it. It all adds up to just about 3 hours from start to finish.

I hope you agree it doesn’t suit me. I assure you it is not comfortable. I want to keep being the me that I see in the mirror. I’ve been told I look like a pilot or an astronaut of the past. And yes, I know my mask matches my eyes.

What is it like?

It’s rather hilarious the process is called scalp cooling. I think the word cooling is used for some type of psychological effect. The machine was turned on and there is a whoosh of cold filling the cap. Seconds tick by and it indeed gets intensely cold in an instant.

A person is forewarned that the first ten to twenty minutes are the worst. After that, the scalp is numbed enough so it doesn’t feel as cold. I want to be crystal clear on what I feel. Fear fills almost every fiber of my being as I fight through the first ten minutes of each session. I wonder if I can get through this torture I’ve willingly chosen. The feeling of desperation is almost more unbearable than the intense cold. I have fought back tears for the few minutes every time. My tolerance for pain and discomfort is quite high. Living with metastatic breast cancer does that. I can barely keep it together.

But then I acclimate and focus on other distractions to pass my time.

The cold didn’t bother me as much as the tightness and chin strap. The chin strap is the worst part and almost intolerable. The covering worn over the cap must be kept on tightly so that the inner cap stays snug on your scalp. This makes it hard to talk and eat because it’s that tight.

Wearing a mask added another layer to my discomfort.

Feeling a little sick added yet another layer. I was fighting it and waffled back in forth from the root cause of feeling light-headed and woozy. Was it the drug? Was it the cold cap?

Both? Or was it just all in my head?

After I was disconnected from the Paxman cooling machine, there is a thawing out period of around fifteen minutes before the cold cap is removed so your hair isn’t adhered to the cap when taken off. Getting the chin strap released helped a lot.

Nurses are special humans. No ifs, and, or buts about it. I wasn’t feeling so hot after my first session. My lovely nurse gave me a head start to go get the car. Meredith wheeled my carry-on suitcase outside to the drop off lane and waited for me there so I wouldn’t have to lug it all the way to ramp and up flights of stairs. I still had two bags to carry on my own. Scalp cooling requires me to bring much more to my sessions.

How’s the cap working?

I’ve told very few people I’m scalp cooling. I wanted to see what happened. Nor did I see the point of a grand announcement since I don’t go very many places thanks to the pandemic. My new treatment qualifies as one that causes immunosuppression. Even fewer people see me.

I have had two rounds of Doxil (doxorubicin liposomal) so far. Cycle two went more smoothly. I didn’t feel sickish from the drug or the capping experience. Time passed a little more quickly. I am expecting each time to feel easier. I know what to expect and how to manage it all.

Success rates vary with different treatments. Paxman considers the cap successful if you keep 50% or more of your hair. My bar is higher. I want minimal loss with no visible bald spots. I’ve seen many pictures of women with bald spots on their crowns. Seeing these discourages me. Time will tell. Shedding is expected. Lots of shedding apparently.

Shedding is normal. Normal shedding is normal. There is NOTHING normal about chemo. Absolutely nothing. The bald spots on someone’s crown and other places on the head are referred to as shedding. Shedding on chemo goes far beyond normal shedding. A person is bald. My definition differs from Paxman.

Maybe I’m splitting hairs.

When a snake loses its skin, new skin is there to take its place. It’s not even a close call. A snake doesn’t have some bare spots where new skin didn’t develop. Shedding crosses a line quickly with certain chemos and it becomes hair loss. Call it what it is.

I should be wearing a wig or wrap by now if I weren’t scalp cooling. It’s been 45 days since my first cycle with Doxil. My hair doesn’t feel the same or look the same. I can wash it only weekly. There are many cautions against styling it. I am to refrain from getting it colored or cut. I even need to be careful combing it. But I still have it. I will count every day I have it as a win. So far, I’ve experienced minimal hair loss (or ahem, shedding).

I am fed up with accepting hair loss in my life. I’m hoping this third time is the charm and I have found a way to keep it.

If not, you’ll see me sporting a variety of looks and you will know it isn’t working as well as I hoped.

A bit messy, but a realistic look for me. So far, I’m hairy happy with the results.

Hard Days

Today I share a story of a recent hard day. It was treatment day, or as I call it, the day I receive my special wellness juice. I cried there, only a few minutes, which I almost never do, because I had been without my hair for two years. It wasn’t supposed to be this way. I was to receive wellness juice for six months and then gradually return back to the life I knew. Six months turned into a year, and then a year became two years and counting. I am glad I have my wig. I consciously chose not to do the head wraps I had done back in 2012 because I wanted to go out and about my business without everyone knowing my personal business. A wig helped me feel normal, and it was only going to be short-term, six months.

Well, sometimes it gets me down. It got me really down on this particular day. I told my nurse, Amanda, that I was feeling a lot of anger over it lately and was just so tired of not having enough hair and experiencing such minimal growth (if any) from what I did have. There are a lot of things that aren’t fair about having cancer that are more important than the hair thing, but the hair thing is still important. On this day, it was the hair thing that affected my emotions in a big way.

I also read a stupid magazine article in the waiting room about how special skull caps (often referred to as penguin caps) were preserving hair for patients so they didn’t experience hair loss. I thought hard about this when I started down this road again. Statistically, you still lost up to 50% of your hair. It worked better on people with thick hair. My hair was fine, and I already had lost a lot of it prior to starting my current treatments due to oral medications with hair loss side effects. The article didn’t make me feel good and didn’t have any of the data that it only sort of worked. Why would it? It wanted to promote a product, even if that meant it was (in my opinion) also promoting false hope.

Another part of the hardness that day was the realization that the silver hair that was growing along my hairline was creeping down my neck and likely was visible from behind me if one looked closely, at the right angle, or in the right light. Again, I try really hard to pull off some semblance of normal and I just don’t need hair choosing to crop up in places where it’s unwanted. I didn’t know how to get rid of it on my own because my eyes and arms would have to detach from my body to see and do what was needed to take care of it. Then I just started feeling really alone and sorry for myself. I could let it be, whack away at it in some fashion where it was sure to look worse after I finished, or I could get it taken care of properly.

On my way home, I saw a William Jon Salon that I’ve passed many times. It was humbling. No, I didn’t have an appointment, but I had been a customer years back for this and that. Now, I was going through chemotherapy (this is where I started to talk-cry) . . . and I had this hair on my neck that . . . needed to go . . . and I wondered if someone could just help me . . . and touch it up. Sniffle, sniffle. Pull myself together. Asking for help in an establishment where this fell under their business shouldn’t be so hard. But it was really, really hard. I felt unattractive and exposed.

Of course they could help. They would love to. Don’t worry. It was very easy. No, there would be no charge. It took less than two minutes. Polly and Jennifer were both very compassionate. I can come back. I most certainly will when my hair reaches a stage where it may be presentable and decides to grow. It’s unpredictable when being on wellness juice is part of my long-term plan. I will dream of going back where I can feel confident with my own hair. I may even get beautiful streaks of blue highlights to match my eyes. Whoa, I better settle down!

I wish there were a secret to getting through hard days. Maybe they just need to be gotten through and put in the past. If I knew how to make them not hard, I would and then they wouldn’t be hard days. I think that’s probably what happens anyways. I figure something out and then move forward where I run into something new that catches me off guard and becomes the next hard thing. I do the best I can and I try to learn from it so the next hard day can be met with a little more grace and dignity.

There have been many days harder than, ahem, my “bad hair” day, but this is the story I’m comfortable sharing. The good news is my track record is excellent for getting through these hard days. Another day there will be something else to deal with, but hopefully I can deal with it swiftly, and it will be a better day. A good day.

Please share how you get through hard days if you feel comfortable.