Barbara Burns and #iseehearts
I haven’t shared with you in a very long time. I needed to step away and deal, as well as try to heal, what was happening in my life. I was not well. One Doctor shared that the breast cancer was a tipping point in my life. Before the cancer, and during the treatments and journey, I was, and am, dealing with a growth on my L5 that impedes the nerves that exit that point, as well as gastrointestinal issues due to the nerve damage. On top of that, I was, and am, dealing with mobility issues and severe chronic pain due to the L5 impediment. And on top of this, for a month, this past summer, I was admitted to the University of Alberta for care and treatment. I have been ruthlessly challenged in all aspects of my being: mind, body and soul.
And now, here I am. Surgery, done and still healing! Internal bleeding, done! Chemotherapy, done! Radiation, done! Radiation ‘boosters,’ done! Tamoxifen pill #1 reaction, done! Tamoxifen new pill #2 reaction, done! Tamoxifen pill #3, from the US, works! I will be on Tamoxifen for 5 – 10 years. IV Herceptin treatment, for a year, every three weeks, is done this Thursday (20th)! Am I healed? No. But I see October 21st as the beginning of my healing and recovery from cancer. Why? It is because my body now only has to deal with one cancer treatment in my system (Tamoxifen). This is awesome!!! Let the healing begin!!!
In a weird way, I am grateful for this journey. I have witnessed and received your incredible love and support. You have no idea the impact you have had on me. The power of a kind word, photo sent my way, hearts shared, sidewalk shoveled, meals prepared, rides to treatment, gifts of love given, time spent with me, artwork & heartfelt cards provided, and so much more. I have been overwhelmed with your caring spirit and reinforcement. As much as my body had to endure the cancer treatments and all of their effects alone, I knew you were always there for me. Never underestimate the power of your love.
So, here I am….and soon, it seems like I will be out and about, in a BIG way…
On October 27th, in three incredible and wonderful ways, I will be part of Fashion With Compassion (a fundraiser for Compassion House where I stayed for 31 days while undergoing radiation treatment). I would love to have you there with me!!!
For those that don’t know, Compassion House is similar to Ronald McDonald’s House, but Compassion House is for rural women fighting cancer. Five-star accommodation, comfort and support is provided, as well as, a shuttle to and from the Cross Cancer Institute. Having stayed at Compassion House, it saved me thousands of dollars in transportation, hotel & restaurant costs. Staying there also saved my body the ‘wear and tear’ of travelling, and since I was stronger, it helped me handle the radiation treatment better. I am helping with Compassion House’s fundraiser (Fashion With Compassion) because it is important and necessary to keep Compassion House’s doors open.
So with that said, I am gladly supporting Fashion With Compassion, in three ways. Melissa Kraft, the Executive Director of Compassion House, asked me to help in two ways with the production of the Luncheon and Gala. The third way is a very personal and meaningful gift from me.
Model in the Fashion Show
- I will be a ‘special’ model for the Fashion With Compassion Show. In this top notch and professional fashion show, there will be a small and special segment with 20 former Compassion House residents. And I will be one of them!
- And yes, I will be wearing heels!!! With this being reality, on October 27th, and in front of 1,400 people, I’ve been practicing walking in my glittery silver shoes! On that day, I will also be blinged out by Hillberg & Berk and be wearing a GOWN (!!!) courtesy of Laura Fashions. And to top it all off, my hair and makeup will be done by Ricci Hair Co.
Video featuring me
- I will be in a short video. In this video, I share one of my journal entries I wrote after I got home from Compassion House. This video will also show me at home, in my art studio, the school where I taught Art (before my cancer journey), and driving in the ‘Whispering Hills’ of Athabasca & County. This is a very personal, and real, footage of me and my journey.
- The reason for this video was confirmed after I presented to the Compassion House Executives and Board Members. In my presentation to them, I shared one of my blog entries and my journey after I left Compassion House. The Executive and Board members understand the challenges rural women face medically, financially, mentally, emotionally and physically; they wish to target some of the money raised from the Luncheon and Gala to support former Compassion House residents on their journey after they leave Compassion House.
Artwork, by me, is for sale
Thank you again for your love and support. There were times I was overcome by all the treatments and their effects. But I took each email, text, card, gift and more, from you, to my heart; I felt your love in my mind, body and soul. You have helped me on this cancer journey. The gifts of your Light and Love blessed my Life.
Artist Barbara Burns in Winter Wonderland
I love winter. I love the beauty of a world covered in snow. I happen to be blessed in a world (town!) of two traffic lights, moose and deer in my backyard, coyote howls that pierce the night silence, forested areas and rolling hills just outside my door, blazing Northern Lights and a community that knows my name and smile. Granted there are things I miss being in a small town, but at this moment of recovery, I appreciate the beauty and the silence.
As I recover, and am still in treatment, from cancer, I love the peace of this place. I am surrounded by the beauty and love of this land and of others. I am blessed and so grateful.
I write this for those who are in the ‘no man’s land’ of recovering from cancer treatment and returning to the world. I write this to share my personal journey and to let you know that I understand, and you aren’t alone.
No one talked about this. I didn’t know and wasn’t prepared for this. ‘This’ is problematic as I am the type of person that if I know what to expect (i.e. ‘this’ is going to be rough), I can mentally prepare myself for the onslaught of occurrences.
Tomorrow, I go for another treatment, which I go for every three weeks for a year, at the Cross Cancer Institute. Surgery, chemo and radiation are done. Since my diagnosis on May 19th, it seems like I’ve been on a whirlwind rollercoaster with appointments, tests, lab work, treatments, recovery from each treatment and their side effects. It is compounded by the fact that I live in rural Alberta and need to travel into Edmonton for all of these sessions. And so, after my last radiation treatment, in the beginning of December, I stepped back and in.
At first I thought is was because I needed rest from the continual movement of my treatment plan, and to recover from the barrage of chemicals and radiation my body had encountered. I knew I was tired as I was dealing with not only my cancer journey, and my ten year’s of dealing with a growth on my spine, but severe reactions to the new cancer medications I received in December. You see, I have learned that one cannot give if they have nothing left, and so, I retreated to recover. But it became more.
All through the hurricane crossing to health I strove to be as well as I could be physically, mentally and emotionally. I ate healthy, did physio, rested as best I could, exercised (even through chemo), and went consistently to (mental health) therapy sessions with a specialized oncologist Social Worker. I thought I was taking care of myself, and I was, so I wasn’t expecting what happened next.
It seems that after the whirlwind of treatment, there is a ‘picking up the pieces’ time. This is a time when one’s world, body and life seems foreign. And so ‘this’ happened: nothing and everything. Feeling oneself imploding and exploding. Silent on the outside yet inside one’s heart and mind is screaming. Happy that treatment is done, but filled with an unexpected sadness and fear. Here, but absent. Confused and out of sync with who one is, your relations with others and the life you have lived. ‘This’ is the thing no one talks about after treatment, or the majority of it in my case, is done.
I shared with my oncologist Social Worker what I was feeling and thinking. She informed me that what was happening to me is common. Then I ask, “Why didn’t I know about it?” I have piles of books and pamphlets on what I was to expect for my cancer surgery and its recovery, as well as what to anticipate for chemotherapy and radiation. Then treatment ends, but no one tells you that you will be ‘picking up the pieces’ of their life because the tornado of treatments.
Why aren’t people told about this challenging mental and emotional recovery of after cancer treatment? As I mentioned I have piles of books I used as reference to help me through the treatment phase. It wasn’t until I was in the throes of recovery confusion and pain that I went searching for help (via books) to get me out of the pile of sh*t I found myself under. I only found two! TWO!!!! And they were both titled “Picking Up the Pieces.”
So, how does one find their way again? I think the key is to focus on wellness of mind, body and spirit. So here is what I did, and am doing, to recover from the aftermath of the cancer journey carnage.
1. Where and when can I talk (regularly) to a professional? There is a huge stigma towards mental health issues. It needs to end. Sometimes things in the body break and are unwell. For example, I had cancer and so I got treatment to rid it from my body. The surgery removed the tumour, and the chemo, radiation, Herceptin IV and cancer medications focused themselves on the hole that remained. Going to talk therapy, one can deal with the emotional hole left behind.
2. How can I rest to rejuvenate and recharge? Yes, that is sleep, but that is also permission to leave the laundry until tomorrow (or the next day). Take time for yourself. Do things that nurture and support your mind, body and spirit. Read. Watch your favorite shows on TV. Meditate. Have a Reiki session. Go for a massage. Rest is not an option, it is a prerequisite in getting well.
3. What ways can I feed my body well? Yes, have the occasional treat (yum!) and eat for enjoyment, but also fuel your body with nutrient rich foods. Food fuels and repairs your body (and your body has been through so much).
4. How can I fit fitness into my day? I’m not talking about running a marathon, but if you want to, go ahead. Especially at these moments of recovery, when one’s energy is very low, it is still important to move your body. Slowly, gently and according to your body. But please move, because studies have shown it helps one’s mind, emotions and the body in general. (P.S. It really does!!!)
5. What brings me fulfillment? This is a big word, and if you are like me, this cancer journey kinda put things into a tail spin. At this moment, I am relearning how to do things for the sole purpose of my happiness, peace and love. It is unnerving because I thought I knew who I was and where I was going, but it seems I am relooking at my life and finding out what really works for me and what doesn’t. I am beginning to let go of what no longer serves/nurtures me, and focusing on what does.
6. How can I reconnect with the world (i.e. others!)? Often when we go through trying times we can isolate ourselves. This is a natural tendency to ‘lick our wounds’ in privacy. But there comes a time when we need to step out again. I know for me isolation is a wonderful way to rest, recharge and rethink, but to stay too long in this position isn’t healthy. As you can see, it is only now that I am reaching out to the world again. And I intend to do it in baby steps because I know my energy levels, due to treatment, are not where they used to be. And maybe they never will return, but I will do what I can, when I can.
I welcome your comments and input...as i can always learn more and I value what others have to say. Please share your ideas and/or story...as you may help someone.
Light and Love to all...
While wearing a Christmas Snowflake Crown, artist & teacher, Barbara Burns', hair is growing in after chemotherapy. Slow and steady...
Surgery, done! Chemo, done! Radiation, done! I still have an IV treatment every three weeks, for a year, but the majority of treatments are done! After the cancer treatment whirlwind, and it being December, I find myself cocooning at home.
The picture above was taken last week, on Christmas Day. On Twitter I posted, along with this picture, "#Chemo head getting some hair in time for a 'Snowflake Crown Christmas' photo shoot! #hair!! #Merry Christmas #Happy Holidays"
I still wear my beanie and wigs (a.k.a. baby it's cold outside!!), but thought I'd share with you my hair progress, visually and status-wise: it is still sparse, but has come in darker and is SO very soft. Ah...progress!
Radiation is done! WooooHoooo!!! (insert happy dance, with fist pumps and a huge smile)
After a month of living at Compassion House, in Edmonton, while undergoing radiation treatment, I am now home. Actually, this week I will be temporarily at home. Tomorrow, I go into the city to watch Beatrice, my radiation buddy, who is 84 (or 85), ring the radiation bell to shout that her treatment is done. Then on Wednesday I have another medical appointment/check in, but I will balance that with a massage! And then on Friday, my friend Paula will drive me in for another treatment (some call it 'chemo maintenance'); this is the one (IV Herceptin) that I will get every three weeks, at the Cross Cancer Institute, for a year. Then, phew(!), I will be at home. (and once I am home, and in between resting & recovering, I will share with all of you about Compassion House, the people I met and my journey)
With this shared, I have completed three major treatments; surgery to remove the tumour, and chemotherapy & radiation to ensure the cancer is out of my body. So below is a picture of me ringing the bell at Compassion House. Being a teacher, a bell represents the end and the beginning. So, I rang the bell to state that this leg of my journey is completed, and I am off to begin another.
Thank you for all of your love and support. You have raised me up and given me legs to stand on when I felt so very weak. I am so very grateful for the love that surrounds me. XOXOXO
(Below are some photos of me ringing the bell at Compassion House, me bundled up and leaving the House, #iseehearts as I leave the city, and "I've finished chemo and radiation" portrait in my Compassion House room. Click on the photos to see the entire image).
Music soothes and moves Barbara Burns through her life (and cancer journey).
Today, I’m going to share my personal bias about music (and by the title, I think you can tell what that is!), and some of the music I love. And then I want your help: I want you to share what music soothes and moves you!
I believe in the power of the Arts (literary, performance, visual and audio). Granted, I may be biased, being an Art Teacher and all, but what people create from their souls is supreme. It has power for two reasons: number one, as an Art Teacher I see first hand that creation is the highest form of learning. So excuse the lesson here, but below is an “educational” visual called Bloom’s Taxonomy to share my point. Bloom’s Taxonomy basically summarizes the steps of learning.
Bloom's Taxonomy visual is from University of Arkansas Tips. Click on image for link.
So, for someone to create a work of art, write a book and produce music, the creator needs to learn and understand the skills of their craft, apply what they know, analyze and evaluate what works, and finally create something that has never been seen or heard before. Pretty impressive this ‘creative’ stuff, isn’t it? Okay, enough of this ‘education’ stuff…
Secondly, the Arts do things to, and for, people. Music can soothe our emotions, and yet inspire us to action (“Pump us up” and Dancing are two of them!!). A work of art can make people sigh with remembrance, and yet capture a powerful sentiment. A written piece has the ability to make us feel connected, and make us think and change ourselves and the world.
So, do you understand my bias?
As I mentioned earlier, in another blog post, music has soothed and moved me. I love all sorts of music; Alternative, Rock, Instrumental, Pop and the Songwriter genres are some of the music I have; in my possession there is an ancient selection of albums, called CDs, that number close to 950, and my downloads on iTunes, well, did I mention I love music? In fact, my love of music is known that I have been asked to join a Pubstumpers Trivia Team to help them with their chances of winning in that area. Needless to say, with all the music I consume, I have various Playlists on my iPhone. When I have people over for dinner, I have a playlist called “Mange, Mange” (this is French for eat…eat!). I have a huge song selection that I play while at “School,” in my classroom, for my students and myself. And then when I come home and want to chill, I have a “Meditation” selection.
But there is one playlist that has gotten me through the growth on my spine and my cancer treatments; it is called “Resiliency.” These songs did two things: they soothed and moved me. I have songs that have quieted and eased my spirit and mind when the effects of treatment were hard. I would focus on a sound or be lulled by the music. These songs would become a sort of musical medication meditation where I would try to block out everything else and just be present with the music. And secondly, with any chronic condition (and life!), there can be some very discouraging and down moments. And so on this playlist I have songs that inspire me, add a little gas to my tank, and have given me more fight.
Presently, I have 114 songs on my Resiliency Playlist. I am sharing some of my songs, as you might be interested in creating your own “Resiliency” playlist or just want to hear some new music. iTunes, as you know, is a great place to hear a snippet of the song, so wander over there if you feel inclined (or click on their name to head over to their website!)! So, here are some songs that move me (in no particular order):
And to soothe me (in no particular order):
So, I would like your input. What songs soothe you? What songs move you? Please share because I am always looking for new songs to add to my Resiliency Playlist. Oh, and did I mention that I love music? (***smile***)
Yesterday I had lunch with an amazing cancer survivor. She has done some amazing things, for hundreds of people who have been recently diagnosed or are going through treatment. She has helped me immensely with ‘check in’ texts, gluten free meals, emergency tea light purchases and the odd little gift or treat left at my door.
We ate lunch and she shared her story. I’ve always believed there is power in sharing one’s story, as others can find their own story in there as well. Understanding and hope are uniting forces. She shared about the wonderful, life affirming things people did, but she also shared aspects that she didn’t like, that others did, concerning her cancer journey.
I realized I wasn’t alone in my thinking. When she was sharing what people said and did that upset her concerning her cancer diagnosis and treatment, it triggered what I had encountered.
Below I share ten things I, and most other cancer survivors, do not want to hear from you as we go through our cancer journey. I wish for you to learn what not to say, or do, when around a cancer patient/survivor. I don’t share this to be cruel to you or to ‘guilt’ you for your actions, I share this for you to be sensitive. You see, you are not the only person who has done these things that hurt us. When a cancer journey begins, we are bombarded with these happenings. We know there is a desire to connect with us and with that sometimes people say, or do, the inappropriate thing; we are human and we make mistakes. I LOVE and appreciate this desire to connect with me. I share this list for you to be sensitive; my intention is to be strong and win this battle, and I know you wish the same for me.
Ten Things I Don’t Want to Hear from You, or Have You Do, When I am on my Cancer Journey.
1. When I am first diagnosed, I know your intentions are pure and that you want to connect with me in this very difficult situation. But please do not tell me about anyone you know who has died from cancer. I don’t want to hear death stories. I want to focus on life.
2. Chemo is hard and the effects of hair loss are just as hard. Surgery and drugs have altered my body; in fact, there are times I pass by the mirror, and I don’t recognize my body, face or head. So, after I share about losing my hair, eyelashes and eyebrows, I do not want to hear about your ‘nonexistant’ eyebrows and eyelashes. It is not the same.
3. During the chemotherapy treatment my entire body is altered. The powerful drug changes my cells and my blood; side effects are extreme and hard. There are times when my immunity is compromised and I am unable to fight infection (been there, done that!). When I see you, I am VERY happy to see you and wish to hug you (as I am a very affectionate person). However, when I tell you that I am unable to hug you due to my low immunity, please do not hug me anyway, or kiss me on the check as an alternative. Please accept my personal physical boundaries at that time. There is a reason for my distance; my health and healing are dependent on it.
4. If I had my way, I wouldn’t be going through this, but I am, and so I have figured out the best plan for my recovery. For me, I trust the cancer experts that are working with my case. So, please I don’t need you questioning my treatment that the Doctors and I have agreed upon. My Oncologists are experts in this cancer cell field, while you and I are not. For example, I am an Art expert in my classroom, and when I tell a student to alter a section of their image, by doing this and that, to make it more effective, and they do it…guess what? The image is improved and they are happy with the results. Sometimes we need to trust the experts.
I know you don’t want me to go through more than I have to, or suffer any more. You see, in others and me, that this cancer recovery is hard work. I intend to beat it in any way possible, and I am choosing to have chemotherapy, radiation, Herceptin IV treatment for a year, and other medications . I don’t view chemotherapy, Herceptin or radiation as poison. I choose to see it as medicine to help me heal. I choose to see it as on opportunity for my cells and my body to begin again. I see life in this treatment. And yes, life can be hard, but I intend to come out stronger and better.
5. I exercise. I drink diet pop. I each lots of fruits and vegetables and limit my carbs. I love chocolate. With this said, with my diagnosis of cancer, I don’t need you guilting me on my past food, drink and lifestyle choices. You are basically pointing the finger at me and saying “What did YOU do wrong to deserve this?” Again, I know you are trying to figure things out. But it is done; cancer has become a part of my story. I had a fast growing and spreading tumour in me, had it surgically removed and am now undergoing chemo, radiation and another intravenous drug for a year to make sure it doesn’t return. Let’s focus on the positive, on what I am doing well, and leave that negative guilt behind.
6. I know you want to connect with me concerning my diagnosis and treatments, but I don’t want your pity, to be given a pity look or for you say with deep sympathy in your voice, “I’ll pray for you.” I know cancer is a scary journey and that I can sometimes shock you by my appearance (when I don’t paint the eyebrows in), but I want to see joy in your eyes when you see me. Pity isn’t empowering. If you are going to pity anyone, pity everyone. Everyone is going through his or her own battle. And if you are handing out sympathy prayers, pray for everyone. Everyone has something they struggle with or need. Let’s give strength, hope and love to others when we see them, talk to them and pray for them.
7. Life is wonderful and challenging. Undergoing cancer treatment is no different. But please, don’t look at me with a somber face and say, “It is all in God’s hands.” Have you already assumed my death sentence? All I know is that I can do my best to fight this disease, and yes, I could die from it. If it is all in God’s hands, let’s focus on the positives that God has given me: doctors, drugs, the Canadian medical system, therapists, friends, family, loving strangers and my will. I am not a mindless or directionless person. What I do has an effect; I choose to be proactive and to be positive. “God is good, God is great…”, but the Almighty also provided all mighty drugs, a personalized treatment plan and an amazing support system for my victory.
8. You know how life can be tiring? When undergoing cancer treatment, my body is being physically transformed, and there are days when I am in survival mode. I still have my concerns of life, but sometimes I can only manage one moment at a time. So, please don’t guilt me by saying, “I worry about you, I’d really like to hear from you more,” or “Did you get my text? You didn’t answer me.” Yes, I got your phone call, card, email, text and/or Facebook message, and I want to connect, but I can’t think straight because of the chemo and my energy is limited.
9. For the caregivers, I know how tired you are. I know you are working full time, are concerned about me and are taking on more of the household duties that I used to do. I see the effects of my treatments and recovery on you, and I wish you didn’t have to carry this burden. And so, I try to help out the best I can, but it is not much. And there are times when I look and sound well, but I’m not. So please know, at this time, I can’t do what I used to do. I can’t think of what is for dinner tomorrow when I am lying on the bathroom floor, from chemo effects, am in severe pain, and have gotten 1 ½ hours of sleep. I can’t grocery shop, clean the house (not that this was a strong suit before my cancer journey!), take care of you when you are sick ,or go for a night out on the town. I want to be what I was before, but this is what I am now, and I still need your help.
10. I have gone out without wigs/head coverings and makeup, but the majority of time, I put makeup on and choose my favorite crown covering of the moment. I do this for me, not you. For when I look in the mirror, I can quickly glance and see someone who doesn’t look like she has cancer. I know I have makeup on and that this blonde bob is not my hair, but I feel stronger and ‘normally’ healthy. So when you see me don’t’ be surprised when I look good and comment, “Wow, you look good!!!” You and I know treatment is rough, but I work at appearing healthy. I work at pushing myself to go and get the mail, pick up a few groceries etc. I work at painting in my eyebrows, brushing my cheeks to a healthy glow and adding mascara to my 7 remaining eyelashes. I work at having a 5 minute conversation with you when I struggle to put sentences together with my chemo brain.
Thank you for your compliments, just try to hide your surprise.
There, I said it. It was hard for me to write this, as despite what the above list states, I have been completely surrounded by love and support. I shared this with you today because, after talking to another cancer survivor, I realized that these unbeknownst actions and words from others affect the survivor. They have touched me and I try to brush them off, but they are still there. So, the teacher in me decided there needs to be a lesson on this matter. Take what you will. The key is, whether someone is battling cancer, or not, give out love, not fear. Surround them with love, kind actions, and inspiration.
I am interested in your response. For those who have gone through this cancer journey, what do you think? Did I miss any situations that you have gone through, and that you would like to share? With that said, please share it as an opportunity for others to learn and grow from. We are all just doing our best…and when we know better, we do better.
I have so much to be thankful for. Despite me writing this after a very tough night of dealing with chemo effects (days 2 - 5 are the roughest...and I'm into day 5), I have so many blessings.
This weekend, we Canadians, celebrated Thanksgiving. This is a time for family, food and reflection. For me, this weekend, my chemo effects have been stronger and therefore, I am feeling weaker. So weak, I emailed my siblings my love and told them not to call, and to tell dad (who doesn't do the email thing) I will call him when I am stronger next week.
I feel I have always been surrounded by love. My parents are the salt of the earth and my older sisters and brother have been a source of guidance, love and support. I shared with them in my email, “People compliment me, but the grace, strength and love they see in me is a reflection of you. Thank you for your love.” I am blessed.
I feel surrounded by love in my community. My community is full of friends, students and strangers. For example, my FaceBook feed is full of messages of love and support from people I have come in contact with, and those whose physical presence I have yet to encounter. This humbles me and yet fills me with such hope. There is incredible goodness in the world.
This past week, there was a Terry Fox Run that my school annually participates in (for cancer awareness and fundraising). Staff and students ran for me. The Run passed by my house, so I created a sign to thank them for taking the time and effort to contribute to this worthwhile cause. Well, unbeknownst to me, at the time, a sign was created for me as well. A local reporter, from the Advocate, saw the sign at Edwin Parr School and contacted me.
I then shared my love and thankfulness, to her, and from that, to everyone who read the story. I find since my cancer diagnosis, the outpouring of love, concern and support has been incredible. Due to my limited energy, I find myself posting emoji’s, FaceBook ‘likes,’ and the occasional post. My upbringing has me at odds with this, as I wish to respond to every comment on this blog, text message, food package, gift and card I receive. But I am unable to do this at this time, just like I am unable to hug everyone I come in contact with (due to low immunity). (***Oh, and I DO miss hugging people!***) This limited contact and thanks makes me sad, but I hope you understand.
So, please accept this note, and Advocate article, as a ‘thank you.’ Your kind acts of goodness have power. I am thankful. I am blessed.
Advocate article written about Barbara Burns' thankfulness for support and love.
Everyone has their moments in life, when they roll their eyes to the sky, or ask themselves, “How do I go on?” It could be because of that frustrating situation at work, a relationship that has you shaking your head and breaking your heart, a financial situation that has you burdened with lack, or a chronic condition (or illness) that consumes your mind, body and spirit. You are at your end and you don’t know what to do; exhaustion and pain fill your entire being.
I have been there, B.C. (before cancer) and now. Currently, after each chemotherapy treatment, around days 3 to 5, I feel that I am losing my mind as sounds, sensations and visuals become too much to take in. In addition to this, my body severely revolts from the chemo. Pain courses through my nerves & muscles, so that the slightest touch is torturous. Breathing becomes tight as the chemo is hitting my lungs. I am exhausted and drained from the lack of sleep due to chemo effects and anti-nausea medication. My digestive tract screams for relief. And then the growth on my spine (a chronic condition I have had for 10 years) along with the chemo effects, makes it challenging for me to lie down, or sit, for too long, and yet I am too tired to walk. I can’t think and articulating my thoughts and feelings is nearly impossible. I am just trying to survive.
Now here’s the upturn….
Music is a big part of my life. I play music at home, in my classroom and crank it in the car. And when I listen to it, while I am on the treadmill, I become “Super Star, Rock Star, Dancing Machine” (this is the reason why I do not work out in public, but at home!). Just like my eclectic ways of being (an artist, public school teacher, community server and former athlete), I have a varied music selection. The reason I bring this up is because I believe music has power to change your perception of the world. With that said, I have a playlist named Resiliency. It is full of songs I listen to while I drive into chemo, when the growth on my spine is acting up too much, or when I am struggling with the frustrations of treatments (or even life in general!!). Music helps set my mind, soothe my soul and motivates me to take another step.
As I mentioned, chemo is challenging and its effects are compounding as the treatments go on. After one session, in my troublesome day 3-5 time slot, I found myself laying on the bathroom floor, emotionally, mentally and physically hollowed. The world crashed hard.
But I wasn’t alone. I had Katy Perry’s “By the Grace of God” lyrics running through my head, as well as my cat, Mandu, sitting close and watching over me. In the song words like:
‘Running on empty, So out of gas, Thought I wasn’t enough, Found I wasn’t so tough,
Laying on the bathroom floor…” resonated with me. And from those despairing words, the rest of the song talks about Katy picking herself up and putting one foot in front of the other. I knew if I could just get through that moment, and then the next moment, I could then find myself getting up and moving on.
So, I have had my chemo moments, you have had other flashes, or hot burning coals, that have shaken your essence. Our saving moments, even for atheists, can come ‘By The Grace of God!’ Now, hear me out: The ‘Grace of God’ can be your belief in God or a Higher Power, but it can also be Love… family… friends…. music… or whatever goodness, in this world, that keeps you going.
I encourage you to find your GOoDness that gives you a glimmer of hope. What makes you smile? What makes you feel at peace? What gets your heart racing? Then these are the things you need to focus on, even as a mantra, in those hard moments, to help you see that you are not alone. For me, on that particular instant, it was a song and a concerned cat watching over me while I laid on the bathroom floor.
So what do you think? What GOoDness has helped you work through your tough times? Please share with me. I’m interested in hearing what works for you. I would love to hear from you.
And if you think someone can benefit from this post, please share it with your family, friends and coworkers.
Barbara Burns' cat, Mandu, watches over her while she undergoes chemotherapy effects.
Loss is a part of life, and with a chronic condition or illness, loss is woven into the fabric of your being. However, everyone has encountered moments, and seasons, of loss. People can leave, illness can come and visit, jobs can be lost, our world changes, and we are left to pick up the pieces (if there are any). I am here to tell you, through my past bouts with depression, and my current growth on my spine and diagnosis with cancer, that loss doesn’t need to define you and that one can find peace and joy in it all.
Loss has come to me in many forms, but I am going to share my story about my recent chemo hair loss and how I have dealt with it. As I have mentioned before, I believe we are more similar than different, so I know the tidbits I have learned on how to deal with loss, may help you in your life. I’ll begin with my story, share five steps on how to find peace and joy in loss and then finally exhibit my latest chemo head looks (i.e. bald, wigs and hennahead)
I kept telling myself, “It’s just hair!!!”, but societal and family programing told me different. My attached sense of womanhood to my breasts and flowing hair was now being ripped apart with a surgery scarred breast and chemotherapy hair loss. As weird as it may sound, I was more frightened about my altered breast and being bald than the trauma of the treatments.
I’ve had a history with my hair, like most women.
As I thought of writing this piece I remembered being a child and completely unaware of my physical appearance or caring what others thought of me. Then something changed in my social programming where I became aware of others and was swayed by their perceived thoughts of me. At the age of seven, Edith Ann, age 8, cut my blonde hair, on her front porch, to jaggedness and clumps. With my mom’s full expression of my name (you know, when the middle name is added to nail home the importance of the situation), I realized she wasn’t as impressed with this haircut as I was. I informed her that I got the haircut for free, thinking that Scotty Burns would be pleased, but dismay was all I read on her face and body. The next day, an emergency intervention was had at Arnold’s Hair Salon. However, my hair failed to respond (as there wasn’t much left), and my seven year old self failed to understand the dire situation of a bad haircut. I survived and carried on happily, and now, this is one of the stories my family enjoys telling to complete strangers about me (and now you know, so they don’t need to tell you!).
And then the day happened, when a person I had a crush on, noticed me and my hair. ***swoon*** It was in Grade 6, and for picture day, I took the time and effort (which I normally didn’t) to style my hair (i.e. blow drying it straight!). My crush was my Grade 6 Math teacher and, to this 12 year old, he smelled divine. My dad did the Old Spice thing, as this is what we gave him for Christmas and Father’s Day, but Mr. H. smelt like BRUT! When the picture packages arrived, Mr. H. handed them out to my class. He whistled at mine, I blushed profusely, and from that moment I fell into the sinkhole of attachment to another’s perception.
The funny thing is that I have never felt like a feminine woman. Growing up I played more sports than most guys and my closet and shoe collection was very limited (and still is). It was through my hair and breasts that I felt my femininity. Even when I was at my heaviest, and I hated my body, I loved my breasts and found joy in my hair. So I find it interesting that this cancer, and its treatment, has challenged this thinking by attacking the two things I identify as being a woman with.
We have all had our moments with our hair: Bad hair days… flyaway and frizz bombs… bad hair cuts… awesome flow moments…. helmet head…mayhems of mangled mess…. “What the F*ck happened here?” hair…and now for me, no hair days.
Whether it be hair loss from chemo, an end of a relationship, employment termination, or other changes, loss can cut you down. And it has the possibility of destroying you. But it doesn’t have to.
I sometimes catch my reflection, at home, and I don’t recognize myself. My head is bald, my eyebrows are barely there and my once full and long eyelashes are sparse. The cancer and its treatments have altered my body, but I am coming to terms with it. I’m not going to say that every day is a bed of roses, but I have come to accept “this is who I am today”.
Loss has the ability to change us. We can choose to make ourselves stronger or we can wallow and drown. I believe that positive change and movement can happen. Granted there are days (weeks) when that seems hard to see as the clouds are surrounding our world, but the sun and the moon are still in the sky.
Here are some of the steps I have taken (through my past bouts with depression, the physical and mental strain of the growth on my spine and dealing with my cancer surgery and treatments) to help me deal with loss:
1. Stop fighting. What?!? Often when we are hurt, our defenses naturally go up. I say, bring them down. Don’t put on that brave face. Feel the sadness of your loss. In a safe way, express your anger. I have sobbed into my pillows. Alone, I have screamed at the roof (and after all is released, I then apologized to my cats for scaring them). I madly scribble words and sentences down on pages and pages of paper. It is important to get that pain, frustration and sadness out of the body. (Also know that anger and depression will flow in and out of your life, concerning this loss, for weeks, months and perhaps years. It is okay. You are normal. Just let it all pass through.).
2. Rest. Loss is mentally, emotionally and physically tiring. Often when we have experienced loss, we try to keep ourselves busy in order not to think/feel our pain. Loss can turn on the manic button; we tackle our ‘to do’ lists, we go out and get together with others more, we binge watch NetFlix and do things to occupy ourselves. There is nothing wrong in being productive and wanting to fill our time. But it is in the space, the silent moments, where healing can happen. Step away from the expectations of life and just ‘be.’ So, pencil in a nap on the Saturday afternoon. Sit down with a cup of tea and read that book you have been putting off. Close your eyes and let your favorite music drift you away. And get some good sleep. By healing your body, and giving it moments of rest and recuperation, you take the first steps of becoming stronger in your mind, body and spirit.
3. Ask for help. Did you know that one in ten Americans suffer from depression? (in my opinion I think it is higher due to the stigma of mental health) Did you know that pain affects more Americans than diabetes, heart disease and cancer combined? Loss in life in inevitable, but there are people around that can help you. Acknowledging that things aren’t going well is the first step in improving your situation. There is therapy for your physical needs as well as your mental needs, just as there is medication to help you with physical and mental pain. You are not necessarily stronger because “you are handling it on your own,” and you are not weak because you are seeking help. Taking the steps and actions to make yourself stronger, through your own work and the support of professionals, has strength and power.
4. Surround yourself with ‘good.’ As fall is approaching, in addition to the body temperature changes due to chemo, I find I need to layer my clothes. This idea can be used when dealing with loss. When we lose something of meaning, it is important for us to take care of our mind, body and spirit. Layer yourself with people, fur babies and things that nurture and feed you. Be gentle with yourself. Have people, music, food, books, shows and etc. in your presence that uplift and comfort you. Soothe and elevate your being. You deserve the best.
5. You can’t control the weather, but you can captain your own ship. The only person we can control is ourselves. I can’t control my chemo hair loss, but I can choose a path that will honor where I am right now. Often in loss, and chronic illnesses, we can focus on what we have lost, that we forget to pause and see all the blessings that still surround us. Yes, I have lost my hair, but what can I do right now, in this moment, to make my world a kinder and gentler place (for myself and/or others). Sometimes it can be as simple as taking the focus off me and sending a kind text to someone, stopping and feeling the warmth of the sun on my body, or smiling at the complete stranger who passes me. My head has been wiped clean from chemo, but I have head coverings made in love from friends, I have funky bamboo wraps that I bought at the Cross Cancer Institute, I have an awesome authentic New York Yankees ball cap purchased when I was at a Yankee's game in NYC, I have two wonderful wigs that two friends helped me choose, and just yesterday, I got my head hennaed (mendhi), by a wonderful henna artist. Yah, I like hair on my head, but this is all good…really good.
So what do you think? Do you have any other steps that have helped you with dealing with loss? Please share with me. I’m interested in hearing what works for you.
And if you think someone can benefit from this post, please share it with your family, friends and coworkers.