Chemo Hair Surprises

By Dr. Darla Shaw 

I started dealing with three bouts of cancer in 2017.  I was totally overwhelmed.   The least of my worries had to do with the loss of my hair. 

While going through treatments, my area support group suggested I see the volunteer wig lady.  I wasn’t thinking of a wig, but the group told me to Give Wigs a Chance.

With a huge mirror in front of me I started trying on wigs.   I tried not to laugh.    There seemed to be a wig for almost any celebrity.   There was the Dolly Pardon wig, the Farrah Fawcett wig, the Shirley Temple wig, the Cher wig, and just so many others.    The wigs came in all lengths, colors and with all types of different stylings.

When the wig woman asked me which wig caught my fancy, I said, “None of them.    I want a short white wig that looks like my normal hair.”

The wig woman was shocked,  she replied,  “Why would you want an old ladies wig when you can have your choice of any color, style or shape?”

I replied,  “I want to look like myself, not some celebrity from the past.   I also like short hair and most of these wigs have volumes of hair.”

To this the wig woman replied,   “You can always take the wig to your hairdresser and have it cut and styled to your preference.” 

“I don’t think so,” I said, “ since I do not go to a hairdresser.”  So, during my chemo treatments I would go bareheaded or if it was cold, wear a ski cap. 

When my hair came back after my first bout with cancer it was white with tight curls.   I could not believe it.  For years I had put my hair in pin curls and big rollers to get curls and now I had natural curly hair.  

After my second set of chemo treatments, I was expecting more tight curls.  Instead, I got hair that looked like Astro turf.  The hair was short and bristly, and almost looked like a “crew cut.”     I was fine with this look as it was neat and framed my face nicely.

Then with my third bout with chemo, I had an entirely different look.   Now I looked like Einstein.   My hair was thin, wispy, and uncontrollable.  It loved to stand up straight or go into a kewpie doll look.  I had to wear a hat over this mess as I continually looked like a “bed head.”   

From my experiences with chemo,  I learned that you will never know what to expect when the hair comes back.  It can even change color.

I am certainly not putting down people who wear wigs or scarves.  With cancer you do whatever you can to survive.   For me, since appearance was never of great importance to me, I did not obsess over the loss of hair.  I took it as it came, tried to find humor in the situation, and stay authentic.

Using the Arts to Help the Healing Process

By Dr. Darla Shaw 

As an 86-year-old who has survived three bouts of a rare nasal cancer in five years, I have spent a good amount of time hospitalized.  How you spend this time in the hospital and recovering at home tells us a great deal about the positivity that you will bring to the healing process.

With cancer, it is not easy to fight back and attempt small forms of activity each day.   Being exhausted, depressed, in pain, and just totally out of sorts does not encourage activity or creativity.  However, if you are going to get back your life, you need to start addressing the problem in small increments while still going through treatment.  

Journaling is always suggested as a pathway to recovery.   Added to my journaling each day, I wrote down specific goals.  These goals were doable but took effort and planning.   For example:

  Journal Entry for Monday, I will:

… walk at least one lap around the hospital floor with my nurses aid.

… call one friend on the phone.

… read at least five pages in my book or a magazine.

…have a conversation with one of my nurses or a staff member.

  If I did not meet my goals for the day, I would not get down on myself.   I would just try harder the next day.

My goals in the beginning included exercises on the floor or in bed (to music).  They also included communicating with friends, family and staff, and reading and writing.   These goals sound easy, but they are not.   With cancer you often don’t want to do anything that requires any extra thought or movement.

Each day that I achieved my goals, I felt better about myself.  I saw that I could make progress.  I saw that maybe my life might get back to where it had been in the past.  I knew, however, that it was going to take time.

I know that everyone’s cancer journey is entirely different and will progress in a unique way.  This is just some insight into my pathway to recovery, a pathway that was new to me.

I  started my journey into healing through the arts with activities that I never considered previously.  When the hospital volunteer lady came around with magazines, coloring books, and crossword puzzles, I took the coloring books and crossword puzzles. 

Surprising enough I enjoyed coloring and took it a step further.   I began to draw stick figures of some of my strange experiences at the hospital.  For example, making sock puppets out of the ugly yellow hospital socks, riding in the air in the weight bucket and inflatable cocoon for movement,  and getting washed up like being in a car wash. 

Each day as I created these simple drawings, I would put them on my empty bulletin board with brief captions.  Before I knew it, staff came in to see my picture of the day and make comments.  

The staff loved seeing themselves in my simple drawings and said, “when will I be on the board?”  When I could not come up with a drawing for someone, I would write a short acrostic poem for them.   For example:  Karen, K (kind),A (artistic),R (runner) E (energetic) N (nurse).  The staff loved these poems equally and I kept myself busy.  I was not focusing on my health issues.   I was focusing on others.

With the crossword puzzles, I would take the words from the puzzle and put them into silly sentences.  In some cases, I even made up a short story with the words.  This activity was challenging and became fun.

Hospital staff come from all over the world.  I was fascinated by the countries they came from and asked the volunteer lady to bring me a world map and stick pins.  When people came to assist me, I would have them fill out a small card with their name, country and put it on the bulletin board map.  We all learned so much from this form of communication.   

In addition to the map, I got large pieces of paper from the volunteer lady and offered the question of the day for staff.  Such questions were:  how you got your name, what was your favorite Halloween costume, what is your favorite musical group or movie?   People came to my room that I had never seen before to read the answers to my question of the day and add their own answer.

At night when staff came to take vitals, we started a story telling group.  I would come up with the topic of discussion for the night.  Then, when and if staff were free for a few minutes, we would share stories.  During the day I would then type up their stories  and give them to them.  I became so close to so many staff members through these sessions.

To keep myself busy right before Christmas, I took my get-well cards, cut out small pieces from them, pasted them to cardboard and made them into Christmas tree ornaments.   These ornaments on my home tree brought me great joy.

Since in the hospital I had established a way of communicating and working with others, I continued that pattern when I got home.    Now I was able to meet face to face with people who were going through cancer.   I was able to zoom and take part in group meetings.  I continued with art, doing crossword puzzles, creating simple funny sketches, asking people where they came from and writing up people’s stories.  

The more you understand that joy comes from interacting positively with others, and not focusing on yourself, the sooner you will heal.  Start with one small activity outside of your comfort zone and it will morph into others.    It all takes time. 

As a cancer survivor you have  strength and an insight into yourself that most others do not possess.  You have what it takes within you.  What you need to do to further survive is to take a risk,  let your creativity in the arts out, and see where it takes you.  You have nothing to lose and so much to gain.

My Little Pink

By Amanda Magnago 

I remember Wednesday, August 19th, 2020, like it was yesterday. The day a mere phone call turned my world upside down. You see, I never quite understood the meaning of “don’t take things for granted” until I began to live what it is like to not be guaranteed something, or someone. My mother.  

That Wednesday, my mom and I were leaving home to go to a friend’s house. But it was not until we were halfway there that she got the phone call. My mom had parked the car at the edge of the road to pick up the phone and after that, I do not recall what the woman on the other line had spoken other than “you have cancer.” I did not know that three words could cut deeper than knives. Those were the only words I was able to immediately take in, and perhaps the only words 12-year-old me could understand. At that moment, you would expect a million things to be going through my head, but I remember there was only one. Loss. I knew my mom was not dead, she was right next to me, but I had lost my innocence. The part of me that for 12 years of my life believed that my mother would be around for as long as I was. 

“My Little Pink” is what I would like to call my story. After my mom’s diagnosis, she was not the only one who began a pink journey of her own while battling breast cancer. Although I did not go through chemotherapy, surgery, constant oncologist visits, I began to experience firsthand a piece of the damage parental cancer can do to teens. In less than a year, I had developed both anxiety and depression. I not only lived in the constant fear and uncertainty of “what would I do without my mother” but also having to accept one way or the other that I would not have her for long. It was a hard pill to swallow so early. Every day I would cry. I woke up crying, I ate crying, and I slept crying. I had horrible eating habits, my anxiety reduced my appetite which led to major weight loss, my hair began to thin, and I had frequent panic attacks. And yes, this was still a major behavioral issue I struggled with while continuously doing therapy. 

For a long time, I resented what I went through. I constantly questioned “why me?” “Why couldn’t it have been one of my friends?” “Why not someone else?” I despised how others, especially my friends, pitied me. Their “I am so sorry…” was not enough for me. They could not feel what it was like under my skin. The pain, the way I suffocated and drowned in my own tears every night. They were not the ones with their mom on the line, with perhaps her days counted. They did not experience the sensation of their stomach’s dropping watching their mom walk through her bedroom door with her head shaved crying. They did not see their mom put on a fake smile every week leaving the house to do chemotherapy and watch her come back weaker each time. They did not know what it was like to take charge of the house while their mom was sick in bed after late nights puking her guts out because of the strong treatment. They did not know the heartbreaking feeling of seeing drains attached to their mom’s breast after a mastectomy. And they especially did not know what it was like to see their mom stripped from something that made her the woman she was. It was hard, watching my mother with her long hair, strong and beautiful physique, fierce eyes, eager and always persevering to provide for her home, to then lose her hair, become fragile and weary, and spend most of her days in bed, crying. Out of everything though, it hurt the most watching the sparks in her eyes fade, and for the longest time I saw what it was like for someone to completely lose hope.  

NJHS Award Ceremony June 2021

This all happened before and during eighth grade, my last year at Broadview Middle School. I have always been a hardworking, responsible student, but with everything that had gone down just before school started, I had doubts if I could manage going through the whole school year just above passing. Looking back, I underestimated myself. I thought poorly of my person and what I could accomplish. Not saying it was easy, but my late nights, ongoing hours looking at a screen, I do not regret any of it. Not if it meant becoming the person I am today. 

Although my mother was going through her intense treatment at the time, she never failed to be my biggest supporter. She not only encouraged me to take part in the National Junior Honor Society, but strive to become a leader, in which I can proudly say I was awarded the Connecticut Association of Boards of Education Student Leadership Award. What drove my success was not the fear of being a failure, but the idea of becoming someone that others could look up to. It took plenty of coping skills and self -reflection to realize that I am bigger than the anxiety and depression that held me back for so long. I did not know of someone my age that had gone through a similar experience, so I strived to be one of a kind. To look back and say that yes, I did cry, yes, I did fall, and yes, I thought that I would not have a way out. But that I also did receive awards, that I did graduate Middle School with outstanding academic excellence, and that I did become something of myself. 

Me and my mom, 3 years post diagnosis, at Danbury High School, June 2023

Today, I am currently going into junior year at Danbury High School, and 3 years have passed since my mom’s diagnosis. A lot in my life has changed, but I am grateful that regardless of the other difficulties I have been through, my mother is in good health and my mental health is nothing compared to what it was before. I personally believe everything happens for a reason, and I am not saying that I wanted to go through what I did, because I would not wish what I have gone through to anyone, but I am thankful I see another side of life I would not have been able to see otherwise. My heart goes out to all those who have or are currently battling cancer, especially teens that have gone through the same experience.  

I still live with the small feeling that I might go through all this again – that is why I call it “my little pink.” Cancer will always be an aspect of my life, a string of uncertainty I am tied to. But my little pink has also brought out a side of me where I have learned to experience life to the fullest and feel like I have never felt before. I do not think I have ever been realer with myself than now. Life is short, and life is temporary, which is why I cherish every moment I spend with my mom because neither is her tomorrow, or mine guaranteed. 

A Little Goes A Long Way…. Let’s talk about movement and exercise! 

By Alison DiPinto, LPC

There’s some very interesting research coming from the world of fitness and exercise and it’s worth knowing about… But first let’s remind ourselves why it is so important to move our bodies.   

Humans are not built to be sedentary. We have all these amazing muscles and joints, tendons and ligaments, bones and cartilage that work together to move all our beautiful parts.  If we think about early humans, we survived by hunting, foraging, farming, walking, running, and riding horses.  We were made to move all day, sleep hard and get up and move again.  Our bodies haven’t changed but our world has. We find ourselves in front of screens, at work and at home ( oh those dreaded phones!) riding in cars, trains or buses and sitting the majority of the day. Certainly, we get many benefits from how our world has evolved but we now need to be much more intentional about moving our bodies.  

We probably all know by now the benefits of movement and exercise, but here are some of the stars courtesy of the Mayo Clinic and WebMD: 

  • Controls weight 

  • Combats health conditions and diseases 

  • Improves mood 

  • Boosts performance 

  • Boosts physical, mental, and emotional health 

  • Increases flexibility and helps prevent injuries 

  • Improves balance and helps prevent falls 

  • Relieves stress 

  • Increases concentrations of norepinephrine, a chemical that can moderate the brain’s response to stress. 

 Wow! That’s quite the list and that’s not even all of it!  

What we also know is that especially if we are not feeling well or are dealing with pain, both physical and emotional, that it’s very hard to find the motivation and desire to move every day. It’s time we start thinking about movement with a much wider lens.   

Many times, when we think about exercise, we think about going to the gym and lifting weights for an hour or attending a class, or going for a long walk, run, bike or swim.  All of these forms of exercise are great but may not be realistic for how we feel and/or how much time we have. Thinking about doing any of these may feel overwhelming and nearly impossible depending on where we are in our treatment, or how much we are taking care of our sick loved one, or how we may be emotionally responding to the losses we are living through.  

So let’s simplify.   (We have finally gotten back to this interesting research!  Very suspenseful!) 

Have you ever heard of Non-Exercise Activity Thermogenesis or NEAT?  No?  Well, you are not alone. That is just the fancy term for all the moving around we do on a daily basis.  Some examples are cleaning the house (dishes, laundry, vacuuming, tidying up), walking into the next room to get something, getting up to go to the bathroom at work, standing while talking on the phone, even fidgeting.   Believe it or not, if we can increase these movements every day it can make a big difference.  Here’s an article that will tell you much more:    

Living Better: how increasing small movements can make a big difference : NPR  

Another amazing research study has shown that doing 1 bicep curl, a 3 second workout, 3x per week actually builds muscle!  3 SECONDS!  Here’s the article: 

 Shortest Workout Ever: 3 Seconds of Exercise 3 Times a Week Grows Muscle : ScienceAlert

(I told you it was amazing!) 

If we start thinking differently about how we move, and what is meaningful and beneficial movement this can be the beginning of a new relationship with our bodies. Maybe we just start with one bicep curl 3 times a week and walking around our house every few hours. This then may lead to trying a yoga or Healthy Steps class at Ann’s Place. This may lead to new friendships and support. And that may lead to a new found love for you body, mind and soul. And that can only invite more joy into life.   

 

Alison DiPinto is the Wellness Coordinator and a licensed clinician at Ann’s Place. 

Welcome, Sunshine!

by Aditi Gupta

It’s almost summer! After a long, chilly winter (and an almost equally frigid spring), the weather is finally taking a turn. As the air gets warmer and the plants get greener, it’s important to make the time to head outside and get some fresh air. We often throw around phrases about how going outside makes us healthier or improves our overall mood. But what’s the science behind these claims?

Evolutionarily speaking, the human body and mind have always flourished in the great outdoors. The term “biophilia” was initially coined by biologist and ecologist Edward O. Wilson as a descriptor for humanity’s affinity for the natural world [1]. From this word was born the biophilia hypothesis, or the idea that humans possess an innate tendency to seek out connections with nature. This concept has since been broken down into several major theories, the most important of which is the Stress Reduction Theory, or the idea that spending time in nature leads to the activation of the parasympathetic nervous system. This causes a decline in stress and autonomic arousal and influences positive emotions [2].

These theories aren’t simply hypothetical statements; studies have demonstrated the concrete physical impacts that spending time outside has on our bodies and minds. Being outside leads to a decrease in cortisol levels, reducing stress. There is also a significant reduction in heart rates and muscle tension [3]. Sunlight energizes the T cells necessary to fight off infections [4].

Melatonin is a hormone produced in the skin upon exposure to sunlight. Melatonin aids with the regulation of your circadian rhythm, which is your body’s 24-hour sleep cycle. Your circadian rhythm is most sensitive to light one hour after waking up. Exposing your skin to sunlight during this time can help you feel more refreshed and energized in the morning [5].

Sunlight triggers the production of Vitamin D when its ultraviolet B (UVB) light makes contact with your skin. Vitamin D promotes the absorption of calcium in the gut and regulates calcium and phosphate concentrations, enabling proper bone mineralization. It reduces inflammation, regulates cell growth, and boosts immune function [6]. Melanin, or the pigment in your skin, absorbs the sun’s UV rays. Depending on the amount of melanin in your skin, it can take anywhere from 10 to 20 minutes per day in the summertime to get your recommended daily dose of Vitamin D. The best time to go out is around midday [7].

It’s important, however, to stay sun safe. Make sure to wear broad-spectrum sunscreen with an SPF of at least 30 and bring a wide-brimmed hat along with you [8]. A common misconception is that wearing sunscreen prevents sunlight from making direct contact with your skin, obstructing Vitamin D production. In actuality, most sunscreens do not block out all of the sun’s UVB light, meaning that Vitamin D production is not negatively impacted [9].

Venturing into the outdoors is an important first step. Once you find yourself bathing in the sunlight, you might be encouraged to engage in different forms of physical activity. This could be anything— taking a walk, playing a sport, doing some yoga. The most important thing is to get your body moving in a way you enjoy. Exercise has been linked to reduced anxiety and depression, as well as a general increase in body and muscle strength. Exercise also simply makes us happier; it stimulates a rush of adrenaline and an increase in dopamine [10].

The simple sensory experiences of the outdoors have an insurmountable positive impact on your mental health. From the sweet smell of flowers to the melodious sound of the birds, nature can serve as a refuge of sorts, a respite from the emotional chaos of everyday life. By simply being outside, you’re taking positive steps toward improving your physical and mental health.

Take a moment, no matter how brief, to step outside. Look around at the greenery. Take a deep breath. Inhale the delightful aroma of the flora and fauna. Maybe do some gardening, or take a light stroll around the neighborhood. Revel in the exquisite feeling of the warmth on your skin. Get out there, and have a great time!

 

[1] A Meta-Analysis of Emotional Evidence for the Biophilia Hypothesis and Implications for Biophilic Design

[2] Associations between Nature Exposure and Health: A Review of the Evidence

[3] The wellness benefits of the great outdoors

[4] Sunlight Offers Surprise Benefit – It Energizes Infection Fighting T Cells.

[5] Effect of Daylight on Melatonin

[6] Vitamin D Fact Sheet for Health Professionals.

[7] Time for more vitamin D

[8] Spend Time Outside and Stay Sun-safe

[9] 6 things you should know about vitamin D

[10] Benefits of Physical Activity

Words of Comfort From Ann’s Place Memorial - May 2, 2023

The following words were given By Kevin Berrill, LCSW at Ann’s Place Memorial on May 2, 2023.

 

Our last memorial was in 2019, only months before the onset of the Covid pandemic.  So, for some of you, it may have been several years since your loved one died.  For others, the death may be much more recent, and your grief is fresh and perhaps even raw.

Before registering, you may have wondered whether coming to this memorial was a good idea.  Would attending today give you comfort, or would it deepen your sorrow?  Or both? 

I hope by the time you leave you will be glad you came, but no matter how you feel when you depart, may you leave reminded that you are not alone in your grief.  May you also feel how much we care about you. 

Here at Ann’s Place, we have been privileged to accompany many of you on your grief journeys, which for some began the day your loved one was diagnosed.  We have witnessed, and were deeply moved by, your struggles, and are honored that you trusted us enough to share your burden with us.

In our grief we feel vulnerable, like a planet without a protective atmosphere to burn up the meteors that come its way.  Everything lands hard.  We may feel anxious.  It can be hard to think, plan, sleep, and experience pleasure; our moments are unpredictable:  We might feel fine one moment and then suddenly a trap door opens, and we fall into a well of despair or feel we are going crazy.

Over the years, some mourners have said to me, “I thought I was making progress in my grief! I was starting to feel normal, and then suddenly I was overwrought.”  At such times I remind them that grief is like walking through a maze, and along the way we will have grief spasms or STUGS, sudden temporary upsurges in grief.  These events are not a sign of that we are going backwards. On the contrary, they are an inevitable and necessary part of our journey.

On the other side of the coin, some mourners feel guilty and disloyal for those times when they feel okay, happy even. To them, I recall the words of Irwin Yalom: “Grief,” he said, “is like staring at the sun.”  If we were unrelentingly immersed in grief, we would go blind.  We need moments of respite and relief, times of distraction and fun, in order to show up for the living, to fulfill our responsibilities in life, and travel whatever distance remains until we ourselves pass away.

So, grief is wavy, unpredictable; it definitely does not unfold in nice linear stages.  But there are certain tasks of grief, as William Worden reminds us:  To accept the reality of the loss, to experience the pain of the loss, to adjust to living in a world without your loved one, and to find an enduring connection with the deceased while embarking on a new, meaningful life.  In other words, our relationships with those who have died do not end.  They continue but in a new form.

Perhaps a loss in your life came at a time when you were too overwhelmed to really feel it.  We might think of numbness as the absence of grief.  But looked at differently, numbness protects us from overwhelming feelings.  Think of our emotions as colors.  Pass all the colors of the spectrum—yellow, orange, green, blue, indigo, and violet—through a prism, and what color do you get?  White. When we experience trauma, we fade to white.  In such times our nervous system can handle only so much current before the fuses blow or the circuit breaker flips. 

Here is the good news:  Grief is patient.  It will wait until you can allow it to sit next to you, for you to say hello to it, and for it to tell you its story.

Ambivalence, anger, regret, old wounds, and unfinished business can complicate the grieving process and make it wavier and more unpredictable.

“He was not easy to live with,” one mourner said to me: “I was going to divorce him, but then along came the cancer, and I decided to stay.  I never thought it would be such a long ordeal, and it is hard to admit that I now feel relief, along with sadness.”

“She suffered so much,” said another. “I did my best, but there were times when I lost my patience with her, and now that is all that I think about. I can’t forgive myself.”

A loss can also trigger past trauma, including abuse and neglect from long ago.  “I thought all my childhood stuff was in the past,” said one mourner to me, “but here it is again, as sharp and painful as ever.” 

In order to fully grieve, it is essential that we feel safe to explore the good and the difficult.  In the words of Black, feminist writer bell hooks, “only love can heal the wounds of the past.” That is why at Ann’s Place we offer bereavement counseling and Alison’s Transition group.

In his 1920s novel, Howard’s End, author E.M. Forster, offered two simple words of advice: “Only connect,” he said.  We are, as Forster suggests, emotionally, spiritually, and biologically wired for connection.  Relationships, all kinds, give us a sense safety, satisfaction, and allow us to bloom.  Love turns our solo into a symphony. 

The greater the love, and the more roles our loved one played in our lives, the greater the loss and the heartache.  Many who have suffered a loss have told me that their relationship was more than the sum of its parts.

One man told me his late husband encouraged him to pursue his passions.  “He gave me permission to be me,” he said.  And he did the same for his husband.

Two grandparents said they seldom felt so alive as when they were with their granddaughter who died of a childhood cancer.  They mourned not just her death but the spark they felt inside themselves when they were with her, along with the years together they would miss.  

Love brings out a sense of safety, enjoyment, intimacy.  As a grieving widow said in the Transitions group, “We just loved doing nothing together.”

“No one,” said one mourner, “cared about the ups and downs of my days as my boyfriend. Now, at the end of the day, he’s not there to care and listen.”  

Another shared how much she misses “being able to bounce ideas off my dad.  He was my backstop and someone who I could turn to when I had a tough decision or felt confused.” 

I will never forget one man who described to me how caring for his dying wife over several years felt like a sacred duty.  When she died, he said, “I not only lost the love of my life, I lost my job, my sense of purpose, my reason for being.” 

One who lost her mother, father, and sister said to me: “I feel dismembered by loss.  No one is alive who knew me as a child.”

Perhaps the one you mourn today gave you permission and encouragement to be you or cared about you in a way that that no other ever has.  Or watched you grow up. Or was your confidante and backstop. Or helped you to feel alive or purposeful. Or in some way magnified your life.  If so, what a gift!  What a joy!  

And what a loss!

No wonder that, in the wake of a significant loss, many people say, “a part of me died, too,” or “I feel a hole inside me.”  Having once felt enlarged by love, we can feel diminished by the death of a beloved. 

Meanwhile, as loss changes us, the world around us doesn’t necessarily change. People who might be good friends, but who’ve never experienced loss or who fear it, might be clueless or act insensitively. Suddenly, the world around us can feel alien. We not only lose a loved one; we might also lose the comfort and safety of the world as we knew it before they died.

During such times, we must tend to ourselves and go deeply within.  We need to be gentle, to be kind, to be self-compassionate.   It is important during this vulnerable time that we limit, as much as possible, our exposure to those who cannot tolerate our sadness or who are exhausting to be with.  More than ever, we must surround ourselves with others who are understanding and patient.  We can do this with loved ones or in a group of others facing loss.  Religious faith or spiritual practice can be tremendously comforting and uplifting in such times.  So, too, are the love and loyalty of our four-legged companions.

In our darkest times, when we feel diminished by loss, it is hard to trust in the transformation of grief.  Like a phantom limb, we ache in the hole inside left by our loved one.  

Author Paulo Coelho writes, “Never. We never lose our loved ones. They accompany us; they don’t disappear from our lives. We are merely in different rooms.”

In closing, our wish, and our hope, for each of you is that the absence inside your heart will, in the fullness of time, become a place of presence:  A hearth, a nesting place for your loved one and the love you shared.  May you feel those you have loved reverberating inside you, offering comfort and succor.  May you hear them softly remind you of your goodness and beauty, offering insight and leading you to wise action; encouraging you to play, to savor, to pursue your passions, and to find renewed purpose; and leading you back into the stream of life.

 

In that spirit, I leave you from the last stanza of a poem by the late Irish poet, John O’Donohue: 

 

 

Gradually, you will learn acquaintance

With the invisible form of your departed.

And when the work of grief is done,

The wound of loss will heal

And you will have learned

To wean your eyes

From that gap in the air

And be able to enter the hearth

In your soul where your loved one

Has awaited your return all the time.

Look Both Ways

By Andi Straus

I woke up one morning in August, 2020, with a curious pain in my side. More discomfort than pain, really, a little like gas pain but different. I didn’t think much of it, except that off and on I felt this pain over the course of several weeks. Something just wasn’t right. I checked with Dr. Google – maybe it was IBS? Pancreatitis? Gluten sensitivity? I finally made an appointment with my primary doctor who ordered a CT scan. All of a sudden I found myself on a cancer journey, a member of a club I had no desire to be a member of, in an alternate universe to the one I’d always known and had thought would last forever.

“Look Both Ways” is what I’m calling my blog, and this is the first of what I hope will be several entries on my cancer journey, a journey similar, I’m sure, to many at our beloved Ann’s Place which has so generously and graciously offered to host blogs like mine so we can share our experiences. The meaning of “Look Both Ways” is that I’m living in liminal space (more on that later) where I have one foot squarely in the land of the living, and the other in the terminal illness territory which will result in my death. So I hold both of these in my vision, sometimes together, sometimes one at a time, and I plan to share here what that is like. I hope that my words will elicit comments and feedback from Ann’s Place readers so we can support one another, share our insights, and grow together.

I came to be part of the Ann’s Place community following my diagnosis in February 2021 (it actually took me three additional months to find Ann’s Place) when I learned I have a rare cancer called a liposarcoma, which is 1% of all cancers, and within that 1% there are more than 80 subtypes. I have a particularly aggressive subtype and have exhausted the few treatment options available: chemotherapy and surgery. I am now participating in a clinical study, and my condition is stable. There is no remission with my kind of cancer, and I’ve already had two recurrences, so my prognosis is poor.

I find myself asking so often: How did I get here? How did this happen? In the middle of this past summer I found myself moving into an assisted living (later independent living) facility in Westchester where I now live with people at least 15 years my senior and in most cases I am the age of their children. I am 71, recently retired, had lots of plans for my retirement including moving to Colorado to be near my daughter and granddaughters, finding a new home in a new community, decades of healthy living ahead of me. It all changed so quickly, and I found myself bewildered, fearful, unbelieving, grieving, all at once. In the hurry to move into the facility, I gave away my winter clothes, gave away most of my belongings,  because I could foresee no future for myself. This was so not part of my retirement plan, so not what I wanted or expected. I wasn’t thinking “why me?” so much as how can this possibly be? I lived in a state of blissful denial. I mean, I knew I was getting older and there would be inevitable aches and pains, but THIS?

As I mentioned earlier, I now live in a space that is liminal. As defined by Merriam-Webster, this is “relating to, or being in an intermediate state, phase or condition: in between, transitional.” Eyes wide open. I look toward the future while not knowing if there will be one, and at the same time face my own death, which is at times unbearable, unimaginable, unthinkable, and so real.

 A friend told me that some time ago liminal space was thought of as a place where people went to seclude themselves from society, and when they returned it was in an enlightened state with wisdom to share from that experience. I don’t know about the wisdom part, but I do know that there is meaning here and purpose, joy and awe and gratitude. Also a huge amount of grief, sorrow, pain and suffering. And those too live side by side.

My apartment in my independent living facility looks out on the Hudson River and I draw strength and peace from it, awe. The Palisades cliffs have changed from the green of summer to the spectacular colors of autumn to the stark brown of winter. The barges move past my window, and their work goes on. Life goes on.

When I was close to death this past summer, on oxygen 24x7, fluid filling one of my lungs, too sick to even tour the hospice where I planned to end my days, I knew what my job was and so did those around me. I completed my will, shared my end of life wishes with my family, gave away my possessions, accepted care from whoever offered it. And then unbelievably the study medication I was taking began to take hold and I started to gain strength, feel better, cut out pain medications, feel restless. We don’t know how long the medication will be effective: my oncologist tells me the median progression free survival time on this treatment is seven months. I am in month eight. I wonder if I will be like one of the cast of the movie Awakenings, where people recovered from catatonic states due to a new medication. And then the medication ceased being effective, and they returned to catatonia. Will this be me too? In the meantime, how will I live?

I never forget for a moment that I have cancer and that my life is precarious. But I have also decided to renew my social work license, which I had let lapse, am signing up for continuing education courses to support my license, rejoining the chorus I used to sing with (although I told them I might not make it to the concert in May), volunteering as a mentor with Imerman’s Angels (a volunteer organization that matches mentors and mentees who share similar cancer diagnoses), and have inquired about becoming a literacy volunteer. Helping others has always given meaning to my life, and as long as I am here and have the strength, I want to continue this. Along with hugging my grandchildren as often as I can, seeing family, friends, spending time outdoors, singing. Planning travel is more fraught for me but may happen. And I am trying to take care of myself as well as I can – on the one hand I think, I might as well eat those Oreos, and on the other, I want to be as healthy and strong as I can be.

I will be exploring all of this and more in the weeks to come. Do you feel you too live in a transitional space? What is that like for you?

Cancer and the Holidays: Keeping it Simple, Keeping it Real

By: Kevin Berrill, LCSW 

Ready or not, the holidays---Thanksgiving, Chanukah, Christmas, Kwanzaa, and New Years---are just about the corner. Even the healthiest people can feel overwhelmed or overstimulated by the frantic pace, unrealistically high expectations, and the sensory overload of holiday music and muzak, advertisements, food and drink, decorations and displays, and social obligations.

Bane or Blessing? The experience of cancer during the holidays affects each person differently. Some glide through the season with ease and a feeling of joy; for others, it is a hard slog to endure. One of the most common reactions is ambivalence.

On the one hand the holidays can be a welcome departure from routine. They afford an opportunity to look more deeply into life, take less for granted, reset priorities, renew spiritual faith, or connect more deeply with loved ones and strangers alike. On the other hand, for many the holidays are a source of added stress and uncertainty. People with cancer (and other serious illnesses), along with their caregivers, often feel out of sync with the celebratory atmosphere all around them and have unrealistic expectations of themselves and others.

Looking Back and Ahead. The holidays mark the end of one year and the beginning of another. They are a time when we look at the past and toward the future. Those who are newly diagnosed, especially those with cancers that are difficult to treat or have a poor prognosis, may look to the coming year with trepidation. Fear that “this will be the last” can weigh heavily and lead some to overexert in order to make the season perfect. The prospect of a new year also raises questions for those who have finished treatment or who have an excellent prognosis: “Will it come back next year?” “If it does, how will I manage it?

Old Traditions, New Circumstances. Some in the midst of cancer treatment---and their caregivers---may wonder if they have the stamina to get through the holidays and another round of chemo, radiation, or some other therapy. Those who once avidly shopped and entertained might now dread the prospect of doing either.

Visiting with loved ones for the first time since undergoing treatment can be comforting and heartwarming. For some it can also be awkward and anxiety provoking, especially having to deal with others’ reactions to their diagnosis or changed appearance (e.g., loss of hair, weight loss or gain). These reactions may include discomfort, avoidance, pity, fear, unwelcome medical advice, or lectures on what to think or feel in order to get well.

Finances. Cancer treatment is expensive, unmanageably so for those who have no medical insurance or who are underinsured, or who find themselves unable to work. Those under financial stress, especially whose tradition it is to exchange gifts, face difficult choices about what, if anything, they can afford. For parents of young children these choices are all the more difficult.

Despite medical advances, much about cancer that cannot be controlled. To find a sense of balance in the midst of cancer and the holidays requires forethought and planning. If you or someone you love is facing cancer, consider the following suggestions:

Allow your feelings: Life threatening illnesses such as some cancers, change the world as we know it. It is natural feel sad, angry, despairing, confused, numb, guilty, or lonely. Ignoring and suppressing your feelings and pretending to be cheerful are likely to make the holidays more difficult. Sometimes when we accept rather than resist our feelings, moments of happiness break through the clouds. If so, give yourself permission to enjoy those moments.

Respect your needs. If you have concerns about whether your usual holiday plans are right this year, it is okay to break with tradition. Allow yourself to change where, when, how, and with whom you spend the holiday. If you used to host holiday dinners, consider a potluck instead. Give yourself permission to decline party invitations and to avoid people and situations that leave you feeling depleted, irritated, or depressed.

Let others know if you don’t if you don’t have the energy or the financial means to buy presents. If you choose to participate in holiday gift giving, keep it simple. For example, shop online, buy gift cards, or buy the same item for each of your intended recipients. Limit your spending to what you can afford and will not regret having to pay for.

Make a plan. It matters less what you plan to do than that you have a plan. Spontaneity is great, but having a plan, even if you decide to change it, is likely to give you a greater sense of control, making it less likely that you will end up feeling isolated or blindsided by others’ expectations and decisions. Be sure to let others close your plan. Be gentle. Pace yourself. Perhaps your plan will be the start of a new, simpler, and saner holiday tradition---or maybe it will be just enough to help you muddle through until January 2.

Take care of your body. Try to get enough rest, nourishment, and exercise. Be mindful of your alcohol consumption. Alcohol is a depressant and can worsen your mood. Limit sugary treats as they too can leave you feeling depleted and depressed. Stick as much as possible to your routines and eat sensibly, including plenty of vegetables, fruits, and whole grains.

Be supportive. If there is someone in your life who has cancer offer the gift of your listening and care. When it comes to holiday plans, let them lead. Refrain from fixing, giving advice, or pushing a holiday agenda; rather, explore with them what would offer the greatest healing and comfort. If you offer a holiday invitation and they decline, let them know they can change their mind at the last minute. A thoughtful phone call, card, or email can also make a meaningful difference. If you want to offer help, be specific: “Can I pick up anything for you while I’m at the grocery store?” or “Would you like me to take the kids out so you can get a nap?” is much more helpful than “Let me know if there is anything I can do.”

Pause and breathe. At a time when so many around you are caught in an endless round of buying presents, give yourself the gift of presence, taking a sacred pause several times a day to refresh yourself and just be.

Reach out. If you need practical support, reach out to understanding loved ones. They may be eager to help but not know how. Let them know what you need---a cooked meal, help with shopping or hosting, someone to babysit the kids, prayers, or kind and supportive listening. Delegate responsibilities whenever possible.

In a world that extols health and vigor and promotes the illusion that life is controllable, the experience of cancer sometimes brings with it feelings of isolation and stigma. The antidote to loneliness is connection. To the extent you can, open yourself to others’ attention and affection. If you have the energy, offer your care to someone else---a loved one or a stranger. Compassionate speech and action help us all to transcend difficult circumstances and enter more fully into our shared human condition. For those with a particular religious faith or spiritual practice, cancer is an invitation to explore and deepen.

Solitude can quiet the mind and body, help us to recharge, and tune in to what matters most. Allow yourself time alone when need it.

It helps to be around people who “get” what it feels like to be affected by cancer. Ann’s Place in Danbury, CT, offers individual counseling, support groups, and a myriad of wellness activities to those affected by cancer and who share their lives. Our services, which are offered free of charge, are there for you this holiday season and all year long. Reach out to us if you think we might be able to help. Doing so may help the holiday season---and the year ahead---look and feel brighter.

Kevin Berrill is a clinical social worker at Ann’s Place which serves living with cancer and those in their lives.


Rebuilding with Purpose - Update

In the spirit of keeping our donors informed of our building progress after the flood, here are a few updates:

Liz Hayes and Sue Chabot help pick out flooring options for our rebuild.

Liz Hayes and Sue Chabot help pick out rugs and flooring options for our rebuild.

  • We would like to thank ServePro for coming out Easter Sunday through that week to clean up the mess. Their team was there to make sure the flood had minimal damage. We have also had them come back and spray for extra mold remediation and run dehumidifiers through the summer.

  • Our insurance was finally able to approve most of our building needs and we have hired TJ & Sons to complete the majority of building repairs. We hope that the core repairs will be completed in November.

  • We have identified several important upgrades needed for the rooms that have to be done now, or have significant benefits to doing while the walls and ceilings are open. For example, we installed a radon mitigation system while the wall was open, and the floor removed.

  • We are especially blessed to have Sue Chabot, Interior Designer (and lead designer on the building 12 years ago) back with us to pick out colors, flooring and layout. She was joined by Liz Hayes to pick out rugs and floors. Thank you Sue and Liz!

  • Projects not covered by the insurance will cost approximately $227,000 and will be divided into two phases, with the second phase happening in 2023. Costs will fluctuate both ways in the next few months due to supply issues and much appreciated donated labor, when available. For a full list of these projects click here.

  • Some time in November-December, we will need to have a large team of volunteers come and move saved furniture back into place, clean toys and kitchen items and unbox and build our replacement furniture.

We will be officially kicking off our Capital Campaign to raise the needed funds in our October mailing. Thanks to some generous donors who gave early, we already have over $60,000 towards our goal!

If you would like to help in any part of our rebuilding campaign, or have questions and suggestions, please reach out to me at shannon@annsplace.org or 203-790-6568 x103.

A Pain Turned To Love

A few thoughts about the passing of an Ann’s Place visionary

This week, we lost a very good person. Ron Olsen never liked to be in the spotlight but the work he inspired has grown to serve thousands of people facing cancer.

His story is very familiar to those of us at Ann’s Place. In the late 80’s he was young and married and trying to start a family but all those dreams and plans were interrupted by a terrible disease. Cancer took his young wife, Ann, but Ron didn’t let his sorrow settle into his soul. He decided to turn his pain into love and help those struggling like he did.

In 1987, he started the Ann Olsen Endowment with many of Ann’s friends and family, including colleagues from Boehringer Ingelheim, where Ann worked.  Through Ron’s vision, they raised funds to help families facing cancer and to make life a little better for them. The endowment partnered and later merged with another agency, I Can, to become Ann’s Place, Home of I Can and later shortened to Ann’s Place. Together, these organizations achieved incredible things that they never could have alone.

Through his work, Ron let his natural joy for life and love for others guide him. He could always be found helping at a fundraiser or guiding the next generation of leaders.  He gladly shared his vision but also allowed others to lead and shine.

Ron’s ability to partner with others and let them make his vision their own was the greatest gift he gave Ann’s Place. This tradition, heavy with community involvement and volunteerism, continues today.  In more recent years, he would affectionately say to us, “This is your generation’s time. Make Ann’s Place what you think it should be.”

Thank you Ron for your many years of encouragement, guidance and care for others. We promise to carry on your legacy and keep turning pain into love.

We will miss you.

The Ann’s Place Staff and Board

Read Ron Olsen’s full obituary here.

9/1/22 Update: The family reports there will be a private Fall memorial, followed by a Ronald Remembrance Day celebration at Ann's Place in the Spring after Ann's Place reopens its doors to the public. Details will be provided closer to the event.

The family thanks you all for the many acts of kindness and support following Ron's passing. The family also requests new tribute donations in Ron's honor be directed toward a fund to update the entrance doors with automatic openers for handicap access.