Head Tilt #77: Learning to F.L.Y (Fully Love Yourself) while losing your hair (5 of 5)

Original art from Dancing with the Diagnosis, 2003

Special note: On March 13, 1997, I was diagnosed with leukemia. During that time, I wrote a book titled Dancing with the Diagnosis, Steps for Taking the Lead When Facing Cancer. It was published a few years after the completion of my treatment. In honor of the 25th anniversary of the diagnosis, I am highlighting parts of the book and the lessons I learned in this five-part series. I hope the posts will encourage and maybe even inspire. I welcome comments and conversations! 

One thing I've been asked throughout the years is whether or not I lost my hair during the leukemia treatments. I did. I was as bald as a baby bird. This post is an excerpt from the chapter that discusses that. 

Excerpt from Chapter 6: Learning to F.L.Y. While Losing Your Hair

Many of us who choose to heal our bodies through chemotherapy are bound to lose our hair. I was told I would lose my hair within three to four weeks after receiving the type of chemotherapy required for my treatment. This scared me for a couple of reasons. First, as a woman in an image-obsessed society, I didn't know how I'd handle it. Would I be able to look in the mirror and truly accept who looked back at me? Would my then-husband still find me attractive? Sure, I was practicing the art of fully loving myself "as is," but I was forging into new territory. 

The second thing that bothered me was that losing my hair would put me in the visual cancer group. Until I lost my hair, I still had days in which I appeared 'cancerless' to those who didn't know better. A bald head would signify my official initiation into the Cancer Club. 

One night I contemplated the power of mind over matter and its relation to hair loss. Maybe I could will my hair to stay in. After all, I heard that some people never lost their hair despite receiving chemotherapy. Maybe I could be one of those! As if answering a question I hadn't yet asked, the next thought in my mind was "rebirth." I understood the message immediately. As a child is born with little hair, my hair loss would mark my personal rebirth into a new life of fully loving myself...as is. Acceptance replaced vanity. 

Hair loss is a very small price to pay for an extension of life.

Each of our experiences may differ: for me, the physical process of losing my hair was much more upsetting than actually being bald. Before my first round of chemo, I had my shoulder-length locks cut short. I thought it would be easier to deal with the short hair when it fell out, but it wasn't. The truth was that no matter what the length, I couldn't stand having strands of hair falling out all over my clothes, in the shower, and on my pillow. I felt like Charlie Brown's Christmas tree: one touch and pieces of my hair fell out like dried pine needles! 

My then-husband, "Jim," had the perfect remedy. "Let's shave it!" he enthusiastically offered. Seeing an opportunity for some control, I agreed. If losing my hair wasn't optional, I'd be in charge of how, where, and when. 

Jim got the clippers, and we went outside. As he shaved away, I let him know that this was the only time he'd ever cut my hair! He made it magical, though. 

He repeatedly told me he loved me and said that I was beautiful- hair or no hair. 

We laughed with nervous excitement as he said, "This is for all the times we've been late because of your hair!" He asked me to sing "Nothing Compares to U" (Sinead O'Connor), and I did. 

What could have been an extremely emotional time was...but the emotions present were love and laughter, not the fear and sadness I had anticipated. 

Eleven days passed before I looked at my bald scalp in the mirror. I decided that I'd see it when I was ready to see it. When I finally took a peek, I wasn't thrilled, but I didn't despise it either. I accepted it for what it was. I then realized that my beauty, my femininity, my being, was not in my hair; it was in my soul.

As I became used to my new look, I marveled at my scalp. It was so smooth, so delicate. It needed special care: sunscreen or hats on sunny days (trust me, a burnt scalp is not fun) and cotton nightcaps to keep warm at night. My scalp also needed to be loved, not scorned. Someone told me to experience rain on my naked head. When I got the chance, I did. It was wonderful! 

My hair was about one inch long when my treatments ended, and I was temporarily free from clinic visits. Proud of success and more comfortable with my thinly covered scalp, I didn't want to wear a wig anymore. My newly sprouted hair was a testament to my accomplishments. I fought cancer! Sometimes though, I felt a bit awkward in public. Friends reminded me that fully loving myself still meant "as is," with or without hair or wigs. 

A few times, male acquaintances whom I hadn't seen for a while would stop me and say with disbelief, "What happened to your hair?!" Mentally prepared for such comments, I would muster all the enthusiasm I could and reply, "Isn't it great? I am recovering from cancer!" The look on their faces was well worth the disclosure. 

Losing my hair and growing it back again made me a braver and more confident person. ❤️

Head Tilt #76: Learn to Listen (4 of 5)

Special note: On March 13, 1997, I was diagnosed with leukemia. During that time, I wrote a book titled Dancing with the Diagnosis, Steps for Taking the Lead When Facing Cancer. It was published a few years after the completion of my treatment. In honor of the 25th anniversary of the diagnosis, I am highlighting parts of the book and the lessons I learned in this five-part series. I hope the posts will encourage and maybe even inspire. I welcome comments and conversations! 

Excerpt from Chapter 12: Learn to Listen (Tips for Caregivers and Support People)

As I traveled on my path with cancer I often talked to my support team about how the disease specifically affected them. One recurring theme in our discussions was their desire to make things better for me, coupled with the frustration of not knowing what to do. Those in support roles frequently equate themselves to mechanics who need to fix the one who's hurting. In reality, the one who is hurting doesn't need to be "fixed" by their support team as much as they need to be heard by them. Many of my family members and friends didn't have to do much more than really listen to me to lift my spirits when I was feeling blue.

Just listen. Sounds easy, right? Well, it is...sort of. Listening is easy once we pay attention and commit to the practice of the necessary skills. As you know, listening involves much more than merely hearing what is said, or staying quiet while another takes their turn to speak. Effective listening starts with mindfulness -- being present in the communication situation. The focus is on the moment. Our thoughts are on the speaker's words and feelings, not our next response.

Active listening encourages listeners to check their understanding of a speaker's verbal message (what was said) and nonverbal message (indicated through facial expressions, pace, tone, and body language). Active listeners respect the speaker's ideas and feelings while encouraging further exploration of both. It's particularly appropriate when someone is expressing negative feelings about something.

Consider the following example:

Speaker: I am so sick of feeling sick. I am not getting chemotherapy anymore! 

Listener 1: You want to get better, don't you? 

Listener 2: Image all the people whose treatments are lengthier and harsher than yours.

Listener 3: Chemotherapy is really a blessing. Fifty years ago it wasn't even an option and people's prognoses were much worse. You're actually lucky to be getting it. 

Listener 4: Don't talk like that! Don't you have any idea how much you mean to your family and me? This is hard on all of us.

Hmmm...do you think that the speaker really feels heard by any of those listeners? 

Probably not. 

Each response is a well-intended attempt to change the speaker's perspective, but each comes at the cost of denying the speaker's verbal and non-verbal message.

As exemplified here, more communication is not always best. There is a time to listen. Active listeners tune into the speaker's message and ask themselves, "What's really going on here?" Next, they check their perception of the situation by paraphrasing the speaker's statement with their own interpretation of its meaning. 

For example:

Speaker: I am so sick of feeling sick. I am not getting chemotherapy anymore!

Active Listener: You sound so upset. These treatments must be really rough on you. 

Active listening necessitates clear comprehension of the message as the speaker intended it. When paraphrasing the perceived meaning of what the speaker said, the active listener gets a chance to check if they understood correctly. Without words, the active listener is saying, "I am trying to understand what you're saying. Tell me more." 

Steps for active listening include: 

1. Stay present. Put your own stuff (worries, defenses, rebuttals) aside. You can retrieve it later if you want. 😉

2. Paraphrase. Focus on the actual words and the underlying feelings expressed. What did you hear them say? How do you think they are feeling? Repeat your interpretation in your own words and ask if your guess is correct. 

3. Monitor nonverbal language (both theirs and yours). Be aware of what messages you are sending through your own nonverbals, and carefully check for discrepancies in theirs. 

4. Ask good questions. Strive for clarity and comprehension. For example, ask, what do you mean by that? Could you give me an example? When is it worst? Best? Ideally, how do you see this turning out?

5. When permitted, reframe. After the speaker has had ample time to vent, ask if they would like a different perspective (reframe). If they are ready, offer a new vantage point. If they are not ready, save it for a time when they can really hear you. 

Sample dialogue using active listening:

Speaker: I am so sick of feeling sick. I am not getting chemotherapy anymore!

Active listener: You sound so upset. These treatments must be really rough on you (paraphrase content and feelings) 

Speaker: They are! It's like the treatment is worse than the actual disease! I really didn't feel bad until I started chemo. I just want to feel well...and stay feeling that way. 

Active listener: I bet you do. When will the treatments be finished? (acknowledgment plus a question to elicit more information)

Speaker: Not soon enough. 

Active listener: I can tell you've had it. What other options do you have? (paraphrase expressed feelings/question to find resolution)

Speaker: I guess I could just stop getting chemotherapy...

Active listener:  uh-huh… (shows that you're listening while encouraging the speaker to continue)

Speaker: (spoken softly)... but then I increase my risks for relapse.

Active listener: Hmm... that sounds like a risk you're not willing to take. Is that right? (wait for answer) Can I offer a different perspective? (paraphrase/check for accuracy/ask permission to reframe) 

Speaker: I guess. 

Active listener: The long-term benefits of chemotherapy ultimately outweigh the short-term hardships. Maybe we can talk to the doctors about different things you can do to ease the pain as you go through it. What do you think? (reframe)

Speaker: Yeah, at this point I am willing to do just about anything. 

In the semi-hypothetical example (I had a conversation very similar to this one), the active listener allowed the speaker to explore her feelings before moving to the point of resolution. If the speaker had jumped to the reframe, the speaker might have become even more frustrated. She would be left to explain, justify or defend her feelings. Instead, the listener encouraged the speaker to continue. 

Active listening is not a panacea; it is a needed skill, particularly when performing the support role. ❤️ Don't worry about fixing everything. Commit to hearing your friend. 

Original art from Dancing with the Diagnosis

Head Tilt #73: Dancing with the Diagnosis (1 of 5)

Special note: On March 13, 1997, I was diagnosed with leukemia. During that time, I wrote a book titled Dancing with the Diagnosis, Steps for Taking the Lead When Facing Cancer. It was published a few years after the completion of my treatment. In honor of the 25th anniversary of the diagnosis, I am highlighting parts of the book and the lessons I learned in this five-part series. I hope the posts will encourage and maybe even inspire. I welcome comments and conversations! 

Other than a complete lack of white blood cells in my system, I had no other symptoms when the label of leukemia was thrust upon me. The diagnosis took me, my family, and even my doctors, by surprise. 

I spent the rest of 1997 getting chemotherapy and getting better. By the end of the year, I was in remission. 🎉

I was so very grateful! I was grateful I survived, of course (there was one very worrisome touch-and-go ER trip and then all the fear that comes with cancer), but I was (and remain) even more grateful that I traversed the entire experience.

I've often said that there's nothing like a life-threatening illness staring you in the face to help you see things clearly.

I learned so much. Cancer took my hair but gave me wisdom.

Excerpted from the prologue of Dancing with the Diagnosis, here is the imagery that helped me remember my strength as I danced with my own diagnosis. I got the idea in that place between sleep and awake, as I received chemotherapy. I wrote it out the next day. 

The Dance

“DANCE WITH ME," Cancer commanded.

"NO!" I shrieked in a fusion of fear and disbelief. 

I wanted nothing to do with this would-be suitor and surely couldn't comprehend why it had chosen me in the first place. Before I could make sense of this insanity, I realized this dance was not optional. 

Cancer's clutch was firm as it led me to the floor. Arm in arm we were clumsily stepping to the awkward beat of chaos. 

The dance it had choreographed for me was riddled with mismatched moves: dangerously low dips coupled with wild swings and unexpected turns. The music was equally discordant. High crescendos crashed into silence, and the tempo wildly sped up again. 

Like a lifeless rag doll pinned to my partner, I was spun in circles of sadness until I was left physically and emotionally exhausted. 

Just when I was sure I could dance no more, another dramatic change in tempo took me by surprise. My partner and I came face to face. Our eyes locked in fury. We seemed much less like dance partners now but more like a matador and a bull, ready for the fight. (Looking back, I wonder, "Which one was I?")

The new beat brought with it the realization that no longer need I follow in this twisted dance. If cancer and I were to be partners, I would lead. 

And lead I did!

My head cleared; my senses sharpened. Like water nourishing a wilted flower, control and determination rejuvenated every cell of my being. I kept my posture strong and stride swift. 

My spirited steps were carefully planned, precise, and perfectly timed with the new unfolding song. Our dance was transformed from one of a very physical nature to one created by the positive powers of my mind. 

The distance between cancer and me increased. 

We were back-to-back, barely touching, 

and it was not long until its shadowy figure was just a blur. 

As the song faded into the past, I found myself dancing solo. 

I stopped...caught my breath...and smiled. 

I slowly exited the dance floor, a wiser and more beautiful person.

Original art from Dancing with the Diagnosis, 2003

Head Tilt #74: What kind of news did you receive today? (2 of 5)

Special note: On March 13, 1997, I was diagnosed with leukemia. During that time, I wrote a book titled Dancing with the Diagnosis, Steps for Taking the Lead When Facing Cancer. It was published a few years after the completion of my treatment. In honor of the 25th anniversary of the diagnosis, I am highlighting parts of the book and the lessons I learned in this five-part series. I hope the posts will encourage and maybe even inspire. I welcome comments and conversations! 

Excerpt from Chapter 1: Choose Your Words Wisely

We did not choose our health issues. We did not ask for our lives to be put on hold. We did not volunteer for repeated hospital visits. We did not choose to dance this dance! When we reluctantly start our dance with any diagnosis, decision-making feels out of reach, and control is seemingly lost. As we search to regain personal power, it is essential to first review and perhaps modify the words we choose. 

The cycle is significant: Our word choices shape the realities we see, and the realities we see shape the words we choose. Censoring the negative words that creep into our daily vocabulary is one way to exercise control of our word choice, and thus, our realities. 

For instance, I once told my mother that I dreaded Fridays -- my clinic days-- because I always seemed to get some sort of bad news from my doctors. For me, this was true. My reality was that clinic days equaled bad news days-- I had plenty of evidence to support this; I always seemed to learn something I would have rather not known on Fridays. 

Being the ever-wise woman that she is, my mom instantly picked up on my use of the word "bad." Why would anyone in their right mind look forward to a visit when they received something "bad" each time? 

From there on, she asked that I not use the word bad to describe any kind of news I received on Fridays. Instead, we would view news in three tiers: 

1. News that wasn't immediately favorable was viewed as mere information; we would simply refer to it as just plain "news." 😐

2. News of a more encouraging type (improved health, steady progress) would be labeled as "good news." 🙂

3. News that topped the others (no need to be admitted to the hospital, surprise improvements) would be called "AMAZING NEWS!" 🤩

After each Friday clinic visit, I would classify that day's news and report back to my mom. Eliminating all possibilities of "bad" news for my mind and allowing myself to choose between neutral and positive alternatives softened the edge of many appointments. What we say shapes what we see. ❤️

Original art from Dancing with the Diagnosis, 2003

Head Tilt #75: The Caregiver Contract (3 of 5)

Special note: On March 13, 1997, I was diagnosed with leukemia. During that time, I wrote a book titled Dancing with the Diagnosis, Steps for Taking the Lead When Facing Cancer. It was published a few years after the completion of my treatment. In honor of the 25th anniversary of the diagnosis, I am highlighting parts of the book and the lessons I learned in this five-part series. I hope the posts will encourage and maybe even inspire. I welcome comments and conversations! 

At the time of the leukemia diagnosis, I was in my last semester of graduate school, studying communication. I looked at everything through a lens of communication, and still do! I am an avid advocate for talking about talk. I love to declare intent, unravel conversations, and make expectations overt. 

Excerpt from Chapter 11: Create Clear Communication With Your Caregivers and Support People.

We are not the only ones who feel a loss of control when the diagnosis is cancer. Caregivers and support people go through their own feelings of anger, helplessness, and confusion. In a sense, they dance their own dance with the diagnosis. They want what's best for us, but often have trouble figuring out what that is and how to deliver it. Roles are reciprocal: sometimes they need our help as much as we need theirs. 

I wrote the Caregiver Contract with these thoughts in mind, to clarify needs and ease initial tensions. Used early on, it also establishes some healthy communication ground rules for you and your support team. The top portion provides basic guidelines for positive support. The bottom portion of the contract, our agreement- reminds us of our own commitment. This portion holds us accountable. We are active participants in all parts of our healing process. 

All guidelines were inspired by real experiences. I made copies and distributed them to my caregivers. And then we'd talk about it. Effective communication is something that happens between people. It's not a linear event. 

Caregiver Contract

1. Please don't be afraid of me. I am still the same person you've known and cared for; I just have a few new mountains to climb! 

2. Please smile when you see me. Frowns bring me down. 

3. Please ask me questions about my moods and feelings. It is not always correct to assume that I am sad, tired, mad, or depressed. At times I might be, but other times I am experiencing feelings o peace, happiness, and joy. Ask me how I feel and I'll tell you. 

4. Please stay positive. 

5. Please take very good care of yourself. You are extremely important to me. 

6. Please gently ask my permission before trying to shift my perspective. Sometimes I am just not ready to look at the brighter side. I know you don't like to see me feeling low, but I need to travel through all my emotions instead of ignoring them. I'll let you know when I am ready for a new perspective. 

7. Please don't ever give up! 

In turn, I agree that...

1. I will never give up.

2. I will be open and honest regarding my feelings (as soon as I know what they are).

3. I will be an active participant in my healing process. When agreed upon, I will follow my doctors' orders and I will maintain a healthy mental attitude. 

4. I will tell you my needs and attentively listen to yours. 

5. I will keep my sense of humor.

6. I will practice clear communication with you.

7. I will always appreciate your love and support.

Original art from Dancing with the Diagnosis,2003