Cold Capping Update #2

Taxol is a chemotherapy drug that causes hair loss. It occurs somewhere 2-4 weeks after an initial dose. After so many drugs, after losing my hair twice previously, and even while I used a cold cap, my naiveté continues to surprise me. I got good results while on Doxil. I hoped, no – I expected it to continue when I switched to Taxol. I had passed the two-week mark on the new drug and was doing okay.

Then the three-week mark hit. More hair came out in with my morning comb out than I had experienced. How odd. Then with the night combing. Hmmm. I started documenting it. The pattern continued and got worse and worse with each day. It was matted in the morning when I woke up and that never had happened. As gently as I combed, out more would come. I commented to a friend that at this pace I wouldn’t have any hair left by the end of January. The writing was on the wall. Hair was on my clothes, on the floor, and in my food. Hundreds of strands in my comb and on the bathroom counter became thousands. I filled waste baskets.

Losing hair is a visual hopelessness. There wasn’t anything I could do to make it better.

This pattern continued steadily for three weeks. I stabilized by February with noticeable damage done to my hairstyle. There were bare patches on my crown, in the back, and on the sides toward the front. Not much was left if I were to pull it back into a ponytail or put it up. It was flat, unhealthy, and unattractive looking. I looked sick. I loved donning a hat for outside winter fun. I was skilled at arranging it just so to pull off a normal looking photograph taken from the front. People said I look great! People lied.

Some people photograph the clumps of hair and growing bald areas. I’ve seen the pictures. My personal moments will haunt me and I don’t need a visual reminder. No one needs to see my hair to make it real for them.

So, what good is the cold cap? Note it worked impressively well while on Doxil, not so well on Taxol. The recommendation is to continue because it can speed regrowth. Other users (and the nurses too) do confirm that regrowth is faster. Of course, that’s the recommendation because the company makes money with continued use. The thing is I’ve paid for my maximum capping sessions and anything over that is now free. I still have to endure the discomfort and extra time involved. Happily, I have seen some hints of regrowth from the top. The sides might be filling in, but this is even slower. I’ll stick with it.

One bright side is the first ten minutes with the cap is more durable. It’s no longer the worse possible feeling I can imagine. It’s no big deal. It almost feels refreshing and I kind of like it. It all goes quickly like clockwork. After 19 capping sessions, this is my norm.

I wonder at times how much more can I take. Apparently, there’s always more. I loved having hair again. I didn’t quite like having it so long, but that isn’t a problem anymore. Others’ comments that I have cute wigs are true. These comments also minimize a loss they’ve never experienced.

I just keep losing and I don’t know how this is my life.

I should be grateful I haven’t reached my breaking point. Should be. I think I’ve been broken repeatedly. My breaking point keeps getting reset to something more devastating. I should be glad it’s “only” hair. Again, should be. I am, but it’s my hair. Without it, sensitive comments absorb more quickly though my scalp and go straight to my emotions. I should remember it will grow back. Another should. I was without it for years the last time. This is now one more uncertainty in my life. Yes, I have bigger worries. I know I don’t need it, and I know others have been where I am, but I still need to hear I am heard. I need that ounce of validation that my tears and grief are validated. I need a little grace in my world where I don’t feel much.

I felt anger with this development of noticeable hair loss. I felt angry that I looked sick. I felt angry that the cold cap hasn’t worked better for me. I felt angry this happened again. And I still feel angry at comments that have come and will come from others. To be blunt, there is understandable ignorance from those who have never experienced chemo induced hair loss. I carry the burden of a teacher in how I choose to respond to well intentioned, yet ignorant, comments such as: It’s just hair. It will grow back. You have a wig. You look good. I know all this. It’s just hair and it’s not. I do look good in my wigs. It doesn’t mean I want to wear them. A part of me would LOVE to request that people forego coloring their hair. This raised such distress early on in the coronavirus lockdown. Maybe everyone I know needs to shave their head and keep shaving it to experience an inkling of what is one of the most emotional side effects from chemotherapy. Would those actions help me? Mmmmm . . . maybe.

Maybe, maybe, maybe.

People would sooner have regular colonoscopies.

There is such attachment to our outward appearance. Even to temporarily let go of that with what would be a selfish suggestion on my part would provoke instant emotional resistance at the possibility of not having hair for a relatively short period of time. No, I don’t expect anyone to embrace gray or baldness to prove anything to me. It still would not be the same. Just my ego acting out.

At this point in May, I’ve lost about 75% of my hair. I’ve opted for a short cut to take off the stringy strands that made me look sick and unhealthy. It’s more of an even cut and will support a better look as hair continues to fill in. I also colored it on my own a few days after the cut. Both are not to be done while cold capping because of the added stress it puts on the follicles. Big shock that I went against recommendations. It just isn’t realistic for me not to ever cut or color it again because treatment isn’t going to end for me.

That’s the update. I am a supporter of using a cold cap if it is an option for you. It digressed and wrote a fair bit about my hair and hair loss. They go hand in hand. The first photo was before Taxol took a toll. The middle photo doesn’t quite do justice to my daily look. Even in this photo, I was finger styling it and moving more of it to the front so it looked like I had more. I feel very comfortable with my short cut and I’m happy enough with this look.

We all need support when we’re down, upset, or frustrated. It can be an offer to talk where one person truly listens. It can be an empathetic comment where there is no attempt to fix anything. Sometimes an emoji is enough to convey what words miss. I find regular texts from a couple friends reassuring that someone cares. What words are supportive? I hear you. You are not alone.

Trauma, Cancer, and Hope

Trauma

A good friend spent part of her weekend doing some reading on trauma for work and discovered the acronym H.O.P.E. standing for the phrase Hold On Pain Ends. She knows I have tremendous faith in the transformative power of hope. Holding on and believing that all will be well again is a wonderful feeling and vision for healing.

Many people think of trauma as it relates to military personnel who return from active duty with PTSD. People who have been in accidents, suffered abuse, had violence directed at them, witnessed atrocities, been through disasters, lost loved ones, and have been through (or continue to go through) an illness also can be diagnosed with PTSD. Any negative event can cause trauma.

Cancer and Trauma

PTSD is a mental health condition that develops after exposure to a traumatic event. Cancer survivors have experienced their fair share of traumatic events. Painful and emotionally stressful tests, treatments, receiving bad news, hard emotions to process, and living with chronic or painful physical issues are possible sources of trauma. Looking in the mirror at a changed body, living with lymphedema, and having the pain of neuropathy are daily reminders for some people. Fear of recurrence may always be on a person’s mind. Some anxiety is normal and quite frankly unavoidable for cancer patients and survivors. When these feelings persist or worsen, it could be a sign of ongoing trauma. Symptoms may include things like nightmares, trouble concentrating, feeling fearful, guilty, angry, avoiding things that trigger bad memories, and loss of interest in people or activities you used to enjoy. Other possibilities may also cause these.

I believe seeking professional help is the best approach to address working through trauma. Sharing what is painful can help identify the root cause whether the pain is physical or emotional. Effective solutions can be tailored to a person’s specific needs. Speaking to family, friends, or support groups are other possible choices. Even writing it out can be helpful in sorting out what you think and how you feel as a pathway to ending pain.

Hope

My thoughts keep coming back to that acronym about holding on because pain ends. Hope is hope. How else can a person take an active role in feeling physically and mentally healthier? No official trauma labels need to be involved. Everyone has times where something painful is experienced. I am not a mental health professional, but nonetheless have a few thoughts to share for dealing with pain. I think of it as a way to Help Other People Excel. I can’t say that’s original. I also can’t find a source to credit.

Pain can be a teacher.

Sometimes I need to experience pain and sit with it so I know what not to do. When I’m sore, my body is often bringing something to my attention. I may need to rest. Maybe I’m doing a movement incorrectly. Possibly I’m using new muscles and my body is thanking me for using them but reminding me to do so gradually. I’m also being taught something if I experience emotional pain. Every experience teaches me something, even the ones I find emotionally difficult. You can’t ignore physical or emotional pain. Both get worse if you do. Listen to your body.

Grief is allowed.

You can’t just “get over” things. Just as with the grief when someone passes, many events can still be a passing of something and involve grieving. Again, just as with the grief when someone passes, it comes in waves. One day you are just fine with not working and having a flexible schedule, and the next day this very same thing has you in tears all day. Some insensitive comments leave you unfazed, and then there are others that you believe are beyond cruel that echo over and over again. Some grieve body parts. There are many things you “used to” do that now no longer exist. Those who have had cancer have lost a lot. There can be unexpected spurts of grief that come at the worst times. It’s normal. Allowing yourself time to feel feelings will eventually lead to more good days than bad.

Find a new focus.

Starting something new gives an opportunity to move forward with something different. Fresh starts have their merits. It could be a new hobby or interest. I have mentioned before that working out has turned into a positive focus for me. I also have more time to write. Maybe it’s something bigger like a new job, relationship, home, or city. Change may be exactly what is needed. If nothing else, change serves as a good distraction. Everyone needs a break from whatever makes life harder.

Exercise.

Here is my repetitive plug for exercise. Physical activity can help you see you are stronger than you know. This helps physically and emotionally. I have a long ways to go to make myself even stronger, but I’m stronger than I used to be. Exercise helps me feel more confident and in control. It makes me feel good. I feel less stressed. Exercise provides an opportunity for me to work on my inner strength while I work on improving my body. Finding and reclaiming power by moving is extremely therapeutic. Work with a punching bag is a very effective way to reclaim power.

Get outside.

The effects of being outdoors for me are similar to exercising. It makes me feel good and less stressed just like exercise does. Fresh air and nature calms me. Problems often sort themselves out as I spend time in the woods. My head always feels clearer. Maybe it’s because nature is grounding. If you do not have access to a handy outdoor source like a park, farm, or green spaces, something as small as a garden plot can give you the opportunity to dig, to let dirt fall through your fingers, to weed, to plant, and to watch something new grow. Container gardening has become very popular in areas where green space is limited. This is also a great option if you have some physical limitations. Sitting in the shade with a refreshing lemonade and reading a good book still counts as getting outside.

Forgiveness.

Forgive yourself for past actions. I have heard a lot of people say how important it is to forgive others, show universal love and kindness, speak positively, and have at least one good friend you can count on. All important. Even more important is to forgive yourself, love yourself, have positive self-talk, and be your own friend. I have been pretty hard on myself and now I am much kinder. I believe pain can end when we treat ourselves like we treat others. Each day is a new opportunity to treat yourself well with kindness and forgiveness. Reset every morning.

Believe.

Believe in hope. Expect the best. Hope begets hope. For me, things always come back to my unwavering belief in hope. One of my favorite hope quotes reads:

“When the world says,

‘Give up,’

Hope whispers,

‘Try it one more time.’ “   – Unknown

I love that the source is unknown. It somehow makes it even more appealing to me. It’s as if there is an anonymous and universal whisper that could be from anyone anywhere in the world. The whisper may be a gentle hush. I like thinking of it that way. I see it in the flame of a candle. I hear it when a bird sings. I feel it with good friends. I find it in some of my favorite places. You know where some of those places are if you know me well.

Here is one of my favorite places where I hear the hush. Can you hear it, too?

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Author Anne Lamott describes a hush as something sacred. Hope whispers softly and pushes us to keep trying. Hope as a hush is sacred indeed. Pain ends. Hope remains. It can replace pain and grow exponentially. I continue to listen to the whispers of hope.