My Hair!

Cancer Diary

My Hair!

When I got the news of my diagnosis on September 25th (15 days after my first symptom), the only thing I could focus on was NOT DYING. When presented with possible side effects and/or potential problems, I said I didn’t care. 

The possibility of losing more vision, or even all of my vision, didn’t phase me. I even told the neurosurgeon that if it meant he could get more tumor I had no problem with losing my vision. My attorney daughter scolded me for saying that. “Mom, don’t ever tell your doctor it’s okay to blind you!”

When warned that hair loss was a possibility I think I may have laughed. Who cares about one’s hair when faced with a terminal diagnosis? Well, apparently that would be me. I didn’t think it would matter, but it does.

My hair began falling out on 11/17. I showered and thought, “Oh my, that seems to be more hair than I typically lose when I wash my hair.” When I ran a wide-toothed comb through my hair, huge clumps of long gray hair came out. Two days later I had a wig thanks to the Inside Out Foundation. theinsideoutfoundation.org I’m extremely grateful for all this foundation does, but the wig does not suit me. It is the exact color of my real hair, but to me it screams, “Hey everyone, I have cancer!”

I got an emergency appointment with the wonderful woman who cuts my hair and a friend met me there for moral support. I wasn’t sure if I was going in to get my head shaved or if I was just getting a good haircut. The stylist cut my shoulder-length hair to chin level. I cried when I saw the piles of my silver hair on the salon floor. At least the clumps of hair that came out every day were no longer a foot long. Somehow the shorter clumps were easier to tolerate. 

I soon became adept at the old-man-comb-over. If I could get my hair brushed over the back of my head, I could put on a hat and look fairly normal. I come from a long line of hat wearing women. All of my glamorous aunts wear hats. I have aspired to be like my glamorous aunts and have amassed a collection of hats so large as to require a department store hat stand display to house them all. 

Alas, the hat solution didn’t last long. I’ve lost so much hair from the back of my head, where the radiation was focused, that the comb-over doesn’t really work anymore. So now it’s “cancer hats,” soft skull caps designed to not irritate one’s bald head, cover the baldness, and provide a degree of warmth. These hats also scream - CANCER!

Please don’t misinterpret what I’m saying. I am truly grateful for the radiation treatment I received. I know that “it’s only hair,” but losing my hair made everything real in a way that nothing else had - not even brain surgery. I now carry an outward sign of my illness. I can’t forget or pretend that I don’t have cancer. 

It’s just hair, but it was also part of my identity. My identity as a strong, healthy, active, fun, person. I could pull my long gray hair into a ponytail, go to the gym, and do anything anyone else there could do. I could braid my hair, put on a western hat and go hear live music. I could blow-out my hair, dress up, and go out for an evening with my husband. Now who am I with a mostly bald head and a shit show of a prognosis? 

I’m trying to figure that out. No one is ever the same once they get a “term-limit” diagnosis. I’m learning who I am now. I’m learning that I’m the person who can put on a beanie and go to the park and walk two miles every day. I’m the person who is going to perfect the comb-over and attend a live music performance wearing one of my favorite cowboy hats. I am the person who orders every “cancer hat” on Amazon. I may even be the person who eventually breaks down and shaves her head. Yes, that will scream “cancer” even more, but I may even become the person who doesn’t care about that. We shall see. 

Countdown

Cancer Diary

Countdown

Tonight is my last chemo pill for a month/4weeks/28 days. I’m pretty excited about not scheduling my evening meal early in order to take my antiemetic (aka - anti nausea) an hour after eating and an hour before taking my chemo. Timers have become a big part of my life. I will go back on a stronger chemo pill after the first of the year. Imagine my surprise when I just learned I’ve been on “chemo-lite.” Apparently one is not given the “big ass chemo” while also getting radiation. This is one of many examples of THINGS I DID NOT KNOW ABOUT CANCER. Maybe I was told and just didn’t process this tidbit, or perhaps this tidbit was on a need to know basis? Whatever, I’m excited about getting a month off, but at the same time I'm dreading the full dose of chemo I’ll start after the break. 

I only have two more radiation appointments. On Wednesday I will get to ring the bell. I’ve know about cancer patients ringing the bell - but (and this is a BIG but), I always thought ringing the bell meant one was cured. Silly me. It is a recognition of having completed a grueling treatment. I’m thrilled to be almost finished with radiation and I’ll happily ring the bell even if it doesn’t mean what I thought. 

I will admit that radiation kicked my ass. I have often used the expression of feeling like I’ve been hit by a Mack truck to describe feeling tired. I will admit I have never fully understood that expression. Now I know! I am embarrassed to complain about feeling bone-tired when so many other patients I see at the cancer center are experiencing symptoms that are far worse than fatigue. 

Now that I can see the treatment finish line, what’s next? First I recover from treatment. The timing couldn’t be better. I’m hoping I’ll have my energy back and will be able to fully participate in the Christmas festivities. I’m hoping I’ll be able to fully participate in day-to-day life. 

Second order of business is to figure out my next treatment option. I may have a choice of two options. I am waiting to be assessed for eligibility for an immunotherapy trial. Or I might choose to go with the next “standard of treatment” which is called an Optune Hat. Here’s an internet AI explanation: 

The Optune cap is a wearable medical device for treating glioblastoma (GBM), a serious brain cancer, using Tumor Treating Fields (TTFields) to disrupt cancer cell division. It looks like a mesh or electrode-lined cap worn on a shaved head for at least 18 hours daily, delivering low-intensity alternating electric fields that target fast-growing cancer cells while sparing healthy brain cells. Common side effects include scalp irritation, with benefits shown in extending survival when used with chemotherapy.  

I’ve got a month off to rest, heal, research, and make a decision about next treatment. I will also be spending time with family and friends. Frank and I are planning a beach trip. We are staying in Texas. We had a trip planned to Mexico, but I’m not comfortable leaving the country. I have PTSD from taking my cousin to an alternative cancer treatment center in Juarez, having a medical emergency, and trying to get out of the country and back to the U.S. for medical care. 

I am so grateful to everyone who has held me and my family in their good wishes, thoughts, prayers. I’m grateful for all of the messages and sweet gestures. I am grateful that you are accompanying me on this journey. Let’s countdown together and then get back to enjoying this wonderful life we’ve been given. 

Amanda Shires Is My Co-Pilot

Cancer Diary

Amanda Shires

You may be asking yourself, “What does Amanda Shires have to do with your cancer journey?” Or, maybe even, “Who is Amanda Shires?” For those of you who are not in the know, Amanda Shires is a hometown girl, whose career I’ve been following since the early 2000s when Frank and I became empty-nesters and began going out weekly to hear live music. We’ve watched this young woman grow from a shy teen to the strong Nashville performer she is today. We have all of her records and catch her performing live whenever we can. In fact, we have tickets to see her later this month touring with the Allman Betts Family Revival. Okay, that’s who she is, now what does she have to do with my cancer journey? 

All summer I was eagerly anticipating the September release of her newest album, Nobody’s Girl, dubbed as her “break-up” album following her divorce from alternative country music’s Jason Isbell. My cancer diagnosis took center stage so I lost track of the album release date. 

While in the hospital the first time, I had a 3:00 a.m. MRI where I was offered the choice of earplugs or headphones to listen to music. I chose the music. When asked what I’d like to listen to, I asked the technician if she had Amanda Shires’ new release. Remember, this was 3:00 a.m., I was disoriented and probably still in shock from my diagnosis. When I asked if she had this new album I was literally picturing a turntable and an assortment of record albums on hand in the MRI office. The technician said she could probably find it on Spotify, and she did.

  Amanda’s album was released just 3 hours before my MRI. I was able to listen to her singing through the awful sounds of the forty-five minute MRI. If you’ve never had an MRI, you lie in an enclosed tube and horrific screeching-thrumming noises reverberate through your entire body. Once the procedure was over I told the technician I hoped I had turned her on to a new musician, and bragged that she was from my hometown. I said this with the same enthusiasm of Buddy the Elf when he tells everyone he knows Santa. “Oh, really. Where are you from?” asked the technician. It was then that I realized we were in Lubbock, my hometown, and not on Mars, or Venus or in South America. That’s how disoriented I was. I felt a bit silly telling the tech I was from the very town we were both currently in the middle of. 

The day I was released from the hospital my daughter gave me a copy of the new vinyl album. I sat and listened to it while following along with the printed lyrics from the liner notes. Even though Amanda’s songs were written about heartbreak following a divorce, grief is grief. I was able to relate to every sad verse. I felt I had a comrade in my own devastation. 

Open communication with my family during this time of crisis was important. We began a group text and after several failed attempts to name the text group (Jenny’s got a Tumor, Jenny’s getting a Lobotomy) we landed on Bulletproof. “Bulletproof” is the title of an Amanda Shires’ song from an earlier album, Down Fell the Doves. 

Tiger bill gave me a tiger claw

From a real Siberian tiger's paw, he said

"This'll make you bulletproof"

So I got this tiger claw

From a real Siberian tiger paw

In my pocket

It's got me thinkin' now

What if I really could be bulletproof?

I visualized having a real Siberian tiger claw from a real Siberian tiger paw making me bulletproof. It’s nice to feel bulletproof! I’m even considering a tiger claw tattoo. 

Another Shires’ song of significance is “Break Out the Champagne” from her album To the Sunset. I feel like I’m living the shit show she references in the song. I’m trying to adopt the attitude the song is teaching. 

I said, “Break out the Champagne

If this is how we’re really going to go.

Let’s get on with the shit show. Let’s get on with the show.

So if you see me around town sporting a Siberian tiger claw tattoo and drinking from a bottle of champagne, you will know the answer to what does Amanda Shires have to do with my cancer journey. Thanks Amanda!