As I write this, my mom passed a year ago. Dad, Bonnie, Terri, Rob and I surrounded her in her last few days on this earth. We shared stories full of laughter and tears; love filled the air.
Dealing with the effects of chemotherapy and your mom's passing can make for a tough day. Today, my brother sent a beautiful flower arrangement with a card that provoked so much more than words. The sentence, "Mom's looking down and is proud of you," was the impetus to creatively remember her.
So.... I put make up on (as the eyebrows and eyelashes kinda 'go' from chemo). I put on the colour red, as she loved the colour on me. I went outside, on my deck amongst the trees and sky, as she loved nature and the view of the valley from its platform. I took a deep breath in, remembered her strength and took a picture.
She never 'approved' of short hair on me, but she may have been okay with this look today (concerning the circumstances). And with that said, even though she loved my smile, I think she would have liked this self-portrait.
I miss you, mom. I love you.
Cancer Survivor, Barbara Burns, remembering her mom's one year passing. In Remembrance.
Barbara Burns waiting to see the oncologist at the Cross Cancer Institute in Edmonton.
Yesterday I went for my blood tests and exam that I get before every chemotherapy session the following day. Well, it seems that my infection is still hanging on, and they will be postponing my chemo until next week. I am disappointed with these results, but I know that they have my best interests at heart...and so, I wait and heal. This reminds me, once again, that the timeline I have in my head, is not necessarily the timeline of my body.
So today, I slept in, ate chocolate, and was loved by friends through cards, texts, messages and hearts! Recovery is good!
Patience is a virtue they say. And at times, I have witnessed that as humans, we tend not to be the most patient people. I think it is because we have expectations. And with those expectations, well…we expect things to happen, or people to act a certain way. Sometimes it can feel that time is not on our side and we are standing behind the eight ball.
Not to sound bleak, but life is just one big timeline which is reduced to the dash between your actual birthday and the day you die. The key is to have ‘dashing’ moments (i.e. make them count!). You know, the expectations to your first kiss, graduation from school, the trip of a lifetime, the marriage / joining to your best friend and lover, the final mortgage payment and even retirement! These are the countdowns that make our heart sing, and there are so many others.
However, with a chronic condition or major illness, there are lots of ‘other’ countdowns (i.e. waiting for to get an appointment with a specialist… expecting the test results… waiting to have a treatment in hopes of feeling better… getting the ‘okay’ to go back to work… anticipating hair loss after having chemotherapy… waiting for the side effects to lessen.. wondering when will our body heal… and so on…). The waiting game can seem like torture, since all you want to be is ‘normal;’ it seems like life is spent waiting for the next appointment or the next call. As much as you try to live a normal life, a chronic condition or illness consumes your life, because it is always there in your mind and in your body. And yet, living in the future doesn’t equate to quality living.
I share this because after my first chemotherapy treatment, I began waiting for two specific things. First of all, I began the countdown to baldness. It is written that one’s hair usually falls out on day twelve. I prepared myself by cutting my hair short, but I still waited with baited breath for my hair follicles to fall, kept touching my head, and looked intently at my pillow every morning. Well day twelve came and went. Yes, they did fall in clumps on day eighteen, and I survived (I cried, got buzzed (via clippers, not alcohol), went out and about with my bare head, went wig shopping and am fine). Secondly, after a rough time with chemo side effects, I began the countdown to my second chemo session. As much as I wasn’t looking forward to chemo again, I was disappointed being told that the oncologist wanted another week for my body to heal. In my head, I was to have chemo on Friday, but my body (and the professionals) said ‘no, let’s wait a week.’
Disappointment comes when we expect things. The nature of this beast, and I’m sure your beast is similar, is wanting life to run like clockwork and to go how we want it to go. Well, it doesn’t…and so, what is one to do? Here are four things that have helped me when my expectations have not worked out:
1. Acknowledge your disappointment that things didn’t go according to plan. We care and that is why it bothers us. For me, I wanted to get through this chemo treatment schedule as quickly as possible. Mentally and emotionally I had banked on the timeline the oncologist wrote on the whiteboard for me. Now, it is going to be longer. Needless to say, this woman who rarely swears, was swearing.
2. Get over it… as quickly as you can…by being proactive. Holding onto disappointment over what didn’t happen or what someone did, or didn’t do, can be harmful. It can eat away at your joy, peace of mind and hope; it doesn’t serve you or makes things better. With me, I saw my hair fell out (I saw it in my hands and all over the shower). I cried, then cried some more and then knew I had to be proactive about the situation (thus the buzz cut and wig shopping). Getting over it doesn’t change the situation, but it makes living in the present a great deal easier. (Side note: be prepared to repeat #1 and this step as many times as needed. Feelings of grief and frustration don’t have a timeline and need to work themself out in their own time).
3. See it as it may be for the best. “What?!?!?”, you say. I wish I could say this point is 100% accurate, but sometimes it is. In my case, two days after the news of my delayed second chemo treatment, I saw that my body did need more time. I now know that my body will be stronger for this upcoming Friday’s session and weeks of effects.
4. Make countdowns for things that make your heart sing. Often times we can be so focused on our ‘to do’ lists and schedules, that we can bypass the moments that can be really amazing. I’m not saying we shouldn’t have countdowns with chronic conditions, as remembering appointments and treatments are very important, but try to focus on the special things in life. There are people to see (or have over, even if your house is a mess), trips to be had (even if they are daytrips to the park), concerts to hear (even if it is on iTunes) and so on. With my recent baldness, I am counting the days until I get my head hennaed by a talented artist. Something, or someone, to look forward to does wonders for the soul.
So, whether you have a chronic condition, illness, or just dealing with the ups and downs of life, I hope this helped you with your own countdown woes and expectation disappointments. The key is to feel what you are feeling, get the help you need, and to focus on what makes you happy. Be on the lookout for the good things, people and situations in life.
P.S. Here are a few shots of my chemo hair loss to date...from an 'artsy fartsy' self portrait shot just after I got my hair buzzed (by Vanessa), to my first day in the city after the cut and to how it is today. In upcoming posts, I will share my wigs AND the comparison bald shots of when I was one years old to now. Stay tuned! :)
So what do you think? Do you have any other steps that have helped you with the disappointment of unrealized happenings or being consumed with countdowns? 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.
Life can be tough. Everyone struggles and has pain in their lives. Physically, mentally and emotionally we can be challenged, and sometimes, it can be to the breaking point.
I have been there. Presently I am being treated for breast cancer. In addition to this, for ten years, I have had a chronic condition (a growth on my spine) that has altered my life. To top it all off, at various times, depression has knocked the legs out from me with thoughts of hopelessness and desperation.
Let Me Be Brave is where I reveal my story and the steps I took, and continue to take, to reclaim my life. In dealing with the uncertainty that life presents, I have found keys to help me live a productive and happy life. I share to bring Light to chronic conditions, as well as Love to help in the healing (living) process.
I knew it was going to happen sooner or later, but it happened today. Being mentally prepared, is one thing, but physically holding clumps of your hair in your hand is another story.
During my recovery from breast cancer surgery, I wanted to begin a new section of my blog called Let Me Be Brave, but didn’t know how to start it. Today’s fallout (literally!!) provided the impetus.
Despite cutting my hair short, to help me with the chemotherapy hair loss transition, I stood in the shower and cried. Handful after handful stuck to my hands, my body and the sides of the shower. Even in the midst of this tear duct and follicle release, I kept thinking, “Make sure this doesn’t go down the drain and clog up the pipes!”
I finally stepped out of the shower but was conscious enough to remind myself to be kind and nurturing to myself. I knew this was a traumatic event for me as I was emotionally and mentally vulnerable for a part of my femininity washed away. With that said, nurturing came to me in many forms. Thankfully, my nausea from smells had subsided, so along with lotion to soothe my body, I put on my favorite Jo Malone perfume. Secondly, I hadn’t gotten the courage to collect the hair that had covered the opening to the drain and the bottom of the shower stall, but Suheel came home and gently collected my hair. Thirdly, I put make up on. As strange as this may seem, putting makeup on has been a way that I have always dealt with not feeling well. To me, it was an act of of self-care and preservation, because whenever I looked in the mirror, and didn’t feel well, I still thought to myself, “You look good! You got this!” And then finally, an earth angel named Vanessa, came over to my house, despite this being this Hair Salon owner’s day off, and cut the remainder of my hair off. When I stood in the shower, an hour earlier, I said to myself, “I don’t want to go through this again. It will be too hard.” So, I texted her, and she responded without hesitation. Despite buzzing my hair right down, she helped me feel stronger. What a gift.
With this strength, I went to the pharmacy. I needed to pick up a few things because I was experiencing various effects from chemotherapy. I went with a head covering, but didn’t wear it as I felt solid. As I was backing up out of my driveway, another earth angel caught my eye and stopped my car. Hand delivered, via breast cancer survivor Dorothy Baker’s mom, with a smile and kind words, was a Chemo Chick Head Henna kit. Little did she know what perfect timing, physically and emotionally, she had! Once in the pharmacy, I sat down and awaited my prescription to be filled. A stranger looked at me, stopped and sat down in the seating area with me. She asked me how I was. While I waited, we talked about kindness and hope.
I lost it today, but I also gained so much more. So, if you find yourself in a tough situation, allow yourself to feel the pain but remember to nurture yourself. For, I find that when we are open and allow ourselves to be helped, we find that we aren’t alone; angels and blessings come in so many forms.
Barbara Burns and her pre-chemo haircut
Let me Be Brave by artist, teacher, writer & photographer, Barbara Burns
I don’t have cancer. The surgeon was able to remove the cancer and my lymph nodes showed that the cancer did not travel to the rest of my body. Needless to say, “Phew” and “Thank you” were cried.
Two days after surgery, on June 11th, I had internal bleeding. Recovery was then beyond slow and hard. The internal bleeding, and subsequent continual build up of fluid at the site, put me in survival mode (i.e. not healing, swelling, pain, immobility, unable to rest et al). The site was drained three times.
In addition to all of this, there were constant medical appointments (in the city and in town), and emergency room visits. Emotionally, mentally and physically I was tapped out. It was a very rough month.
Because of my ‘high grade’ tumour (it likes to spread and grow fast), its invasive qualities (it loves to spread), it is a ‘triple positive’ tumour (it likes to feed off of estrogen, progesterone and HER2 protein), and the issue of the growth on my spine (i.e. nerve problems from the hips and down), the oncologist (Dr. Joy!!!!....I love his name!!!!) has created a treatment plan for my body. The focus of the treatment is to make sure the cancer is completely removed from my entire body and that the tumour doesn’t grow back again (and it won’t!!!).
Most of you are in the summer vacation mode, for me it is the season of treatment. Chemotherapy starts this Friday (12:25 pm MST, July 24th), and my hair is cut to prepare myself for the physical and mental loss of it. (Side note: Thank you Kendra for coming with me, and thank you Jenny, at Raw Beauty, for your kindness and scissor support.) The chemo will be through intravenous and is a special cocktail to work with the growth on my back (i.e. not to cause more problems with it). I will have chemo, 4 times, every three weeks at the Cross Cancer Institute in Edmonton. After this, I will have radiation on the site where the tumour was removed. Radiation will be everyday for three weeks. At the same time, I will start another drug that will be given to me intravenously every three weeks for a year. The reason for this extra drug is because of the HER2 Protein I have in my body. Only 15% of breast cancer patients have the HER2 protein and they find that this intravenous drug, for a year, works well at keeping it at bay. And finally, I will begin a drug (pill form!!!!) that I will be on for 5 years to keep the cancer at bay.
Today my dad is travelling, from Medicine Hat, to visit. His visits are always short and sweet (2-3 days at the most!) as I think he likes his own surroundings and bed. I am grateful for this act of love to come and see me before my therapy begins. As I prepared for his visit, I also prepared high protein meals for the following weeks after chemo, as well as my chemo treatment bag (i.e. fluffy magazines to read, headphones for my iPhone, snacks and to follow some throw up bags and etc.). This visit, I will put him to work! We will create some yummy soups for me to eat/sip this weekend and next week. And, we may even pick some of the raspberries that are calling from the backyard, as they are red, ripe and ready. We’ll also go grocery shopping for post-chemo food (i.e. jello, popsicles, ginger ale, pudding, prune juice, skim milk powder (to add more protein) and etc.).
I usually like my guests to come and relax at my home. But my body has taught me recently, that I cannot get everything done. I have learned that I need to ask for help and to let things slide. The house is not as clean as I would like it to be and meals will be simpler. However, this is the first trip dad has taken since mom’s passing. So, in honour of my mom, I did make a coconut pudding and strawberry shortcake icing for the cupcakes. By doing this, it will seem like mom is with dad on this trip.
I’m ready to start. I’m ready to take the next steps towards health and healing. So ready that God(dess)/the Universe/Great Spirit, via Lisa at Alberta Teachers’ Benefits, interrupted this blog sharing, through a phone call, to initiate my long-term disability file. I find myself tentative as I don’t know what to expect (despite all that I’ve read and asked), but I know the army behind me (i.e.you!!!) has buoyed me and helped me find my feet again (via texts, food, emails, gifts, trips to appointments, letters and more).
So with that said, please keep this nervous girl in your thought/prayers and candles lit, this Friday as I begin my new journey of ensuring cancer is a thing in my past. I have witnessed and felt the power of your love; I am so grateful and blessed.
Teacher, Barbara Burns' art room office door, "Post-it Note Love Bombed"
I just found out I have breast cancer. Being the teacher that I am, I shared my story in hopes that it may help someone along their path. Well, it helped me as well.
I am blessed with amazing people in my life (loved ones, family, friends, coworkers, students, community members and complete strangers). The love, and support, that rippled back to me came in not just a wave, but a tidal wave.
I have been known to leave Post-it Notes (i.e. Love Bombs) of love around (i.e. washrooms, offices, desks etc.). Well, karma does exist. The day after I shared my news with my students (and the world, via my website), I came in an saw 'Post-It Note Love Bombs' on my Art Room Office door and all in my office.
Words won't adequately express what I felt, and feel now, but the tears ran and I felt completely surrounded and stronger. Thank you, to the whoevers (as there were different types of handwriting), for your kindness and love. Thank you.
I know I have been in people's thoughts and prayers, since my last blog sharing, so I wanted to share all that is happening. The wonderful benefits of having a webpage is that I can share this update once, and then be able to focus on my healing. Thank you for the hundreds of love expressed through various means. You have steadied my step. Really!!! XO Artist, Barbara Burns, wearing tokens of love.
Below is what has happened in the last few days, and self-portraits I took the day of my meeting with the surgeon at the Cross Cancer Institute.
Barbara Burns tired, but ready, for this cancer journey.
I wanted to be strong, yet open, to all the information I was about to receive at the Cross Cancer Institute, so with my wearable tokens of love (jewelry), I wore red today. Mom loved red on me. Despite her being gone, just over 8 months, she was with me comforting, and giving me strength, in my favorite red top. Being an artist I see, and use, symbols to inspire me. And it isn’t surprising that the colour red is one for vitality, love, blood and passion.
Well, it is going to happen sooner. Much sooner than I was anticipating. My Nurse Navigator, Debbie, who is answering questions about cancer and sending me oodles of information and booklets, told me that surgery would be 3-4 weeks after my meeting with the surgeon. I am the exception to that rule, as my surgery date is a week and three days from today’s meeting (June 9th).
This came after a meeting, the day before, with my Pain Specialist Doctor. I was going in for another injection, to my spine, to help dull/freeze the nerve firings. Once I mentioned that I had just been diagnosed with cancer, he told me that the cancer treatment was the most pressing issue, and that he would not inject me again, into my L5 and the growth, until he was cleared by the cancer doctor, as well as my gastro-intestinal doctor. I agreed that dealing with the cancer was the most pressing issue, but asked him, “What about my pain (as it has been intense)? How can I get some relief for my pain now and through my cancer recovery journey?” He suggested increasing my oral painkillers, which I know my gastro-intestinal doctor will not be impressed (due to its complications and effects on my GI). To add to my frustration, the medication specialist doctor (yes, there seems to be a doctor for everything), isn’t available for months and months (despite being a patient of his); and so, I placed myself on the cancellation waitlist. And all I can think is, “Let’s hope the day I can get in to see him, doesn’t interfere with any of my radiation, chemotherapy or future GI procedures.”
Life doesn’t seem to be concerned with my timetable. In my mind, I was envisioning two more weeks with my students, then a week to physically, mentally and spiritually prepare for the surgery. As a teacher, one is normally drained, to the extreme, at this time of year. I have the ‘end of school’ tiredness in my body along with the mental and physical stressors of having extreme health challenges. My body and spirit feel very weak right now; my reserves are depleted as I have feelings of being blindsided by this new disease and being raw emotionally.
What has given me strength are the hundreds of texts, emails, flowers, candles lit, messages written on paper, books, chocolate, sharings of prayers from strangers and friends, hugs, teary looks, food and offers to sit, and be, in my presence. There is such power in love.
On Monday I have another procedure, at the University Hospital, a gastro-intestinal procedure that will hopefully find answers. Then on Tuesday, I will have time at school to teach and be with my students (and to prep my wonderful substitute). From that day on, my introverted soul will withdraw to strengthen my body, mind and spirit through rest. I intend to face the surgery strong.
I have been called numerous things over the years (***smile***). In fact some of my educational bosses have seen the spirit of animals in me. One assistant principal, when I first started out, called me a tiger; he saw my strength, ‘attack mode’ mentality when something needed to be done and my passion. A recent, former principal said to me, “You are a work horse.” My Great Grandfather would be proud of this comparison as he bred Clydesdales. They are gentle giants and are powerful workhorses that keep going. And as for the tiger, I am earning my stripes; I intend to be strong in my stance and not afraid of fighting this new battle.
All is well and will be well…despite my timeline being off! Ah, life.
Barbara Burns thankful for all the support, and outpouring of love, since her diagnosis.
News came. I was composed in the Doctor’s office. I was composed when I drove home. When I got home, THEN, I cried. Friends offered to be with me, but I needed time to assimilate to this recent disclosure. For me, assimilation comes from creating through ArtWork & Words. And so, here at my computer I sit. I cried some more and then began to put down my thoughts and feelings. For I find, that when I fully express how I am feeling, I can then regroup and carry on. Why do I share myself with you on this Wide World Web? I share because the teacher in me believes in the power of sharing; for I know that what I share might help or change someone’s life for the better. This has power.
The following is what I created:
I know my face is red from crying. I know my eyes are puffy and swollen. My head aches. And my heart seems broken right now. Physically, I have gone through so much already, and this is just another nail on the coffin.
Two thoughts came to my mind:
1. Things come in threes, and
2. How do I tell my dad?
I believe things come in threes and that once the third is reached, the cycle is then complete (yet, my recent fourth broken toe didn’t get this memo!! ***smile***).
Most people know the first scenario (all TOO well), but the following two are new to everyone. I’ve kept the latter two close to my chest for some time. Now, I need to share it, as it is beginning to feel like a burden I can’t carry alone.
1. For almost a decade, I have had a growth on my spine. It has been surgically removed, and has regrown. The neurosurgeons and medical specialists are perplexed. I am in constant pain and I have mobility issues. Continual medical procedures are being done in order to help me with my pain and mobility. I am grateful for all the help and support I have received.
2. From the surgery and the growth, I have nerve damage from my L5. I have recently encountered severe consequences to the areas that these nerve bundles serve. For the past two months, and into the future months, I will engage in numerous tests and procedures to help me in this matter. I am thankful for all the specialists for their work…and that I am Canadian and can be taken care of so well.
3. Today, it was confirmed that I have cancer. I had a feeling, but today with the biopsy results in hand, and the Doctor’s sullen face, it was definite. I will be in line for surgery to remove the growth and then I will be on another journey. Hints of mastectomy, treatment et al were given, but I will cross that road when I get to it. I am blessed for the immediacy that my Doctor and the Breast Centre Radiology (for all in one mammogram, ultrasound and biopsy!) acted.
But it is the final aspect that causes me to be sad and scared at the same time. How do I tell my dad? My mom already knows, as she died from lung cancer eight months ago, and is watching over me. The last few conversations with my dad, I told him that I was having more procedures and tests done concerning the L5 nerve damage, as well as ‘other’ assessments and processes. This strong, unrockable, emotionless man had his voice quaked when he responded, “Oh…no…” I’m glad I didn’t share about the large, hard lump. I didn’t want to worry him more. I have only seen tears in my dad’s eyes twice. The first was when I left home for the first time, and when my mom died.
But it seems I will have to tell him. Tonight, in fact, I will phone him.
Here I am a mature woman, and I am afraid of my dad. I am not afraid of his power, any longer, but I’m afraid that I will break him with this news. My wish is that I will be able to convey that ‘it will be all right,’ to him, even though I am tired as hell from this physical battle.
So many emotions swim over me. I feel anger, frustration, pain, betrayal, anguish, fear and so many others. Yet even with this, and after writing this, I see and feel the love I have in my life. I am blessed with a wonderful family, friends, coworkers, students, community members and strangers who visit my site from around the world. I know I am not alone. This thing called love truly empowers me despite all the craziness that is consuming me right now.
I am blessed in so many ways.