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As a cancer survivor of more than 10 years, I consider myself to be one of the “lucky” ones. At 36 years old, and the mom of a 7 month old baby, I was diagnosed at a relatively early stage and had my supportive family and friends by my side. I traversed the Ontario medical system, slowly learning in dribs and drabs what my future with breast cancer would look like. There were many blood tests, MRIs, surgeries, injections, cat scans and doctor/specialist appointments. My visits to the hospital in that first year seemed constant. Again, I am one of the lucky ones. What if I had to find my way to the hospital myself and spend hours alone with just my own thoughts? I can’t even begin to imagine how much more difficult that experience would have been.

A friend recently shared an article from the London Free Press (from London Ontario), where she had read about a woman, who like me is a breast cancer survivor and was helping other people going through similar stressful medical experiences. I get it, because that is exactly what I wanted to do after my experience with breast cancer. I just wanted to “give back” and help women who were going though this awful experience. To me that desire to help was just innate.

You can probably imagine my shock at reading that this woman was being punished for simply accompanying these people to their medical appointments where she used her own vehicle and charged a nominal fee of $12 for a return trip to the hospital. She would provide comfort and support while they went also through some of the most trying experiences of their lives. According to the article the London City By-Law officers concocted a “Sting” operation to entrap this woman who was illegally using her vehicle to offer London, ON  area residents a very much-needed compassionate service.  She was handed tickets amounting to $2260 for the evil transgression of breaking a city by-law for “owning and operating an unlicensed vehicle for hire.”

As I read this I was so upset. How can the city do this to this woman (who is in my opinion is an absolute Saint) for giving her time and compassion to people who really and truly need it?

Meanwhile, the people who need this service, and often can’t afford to pay market rates of taxi or Uber type services, are the ones being hurt.

People who have not had a first hand experience with a life altering disease like cancer can’t begin to know all the challenges that cancer patients face. I just wish that we, as a society, would practice compassion and support the people who are doing their very best to help ease some of the difficulties these patients go through. Maybe one day these people will be inspired to follow in this lady’s footsteps and pass along their kindness and experience to others in need. This is the type of behaviour that I want to see more of in our society and something that we should all encourage.

-Reesa

If you are unfamiliar with lymphedema, check out our first post: What is Lymphedema.

Can lymphedema be prevented?

Yes and No…

Lymphedema could be avoided if lymph node dissections and radiation did not happen, but thankfully treating the cancer is the priority.

Lymphedema is not a given from these treatments. However, it can develop very soon after surgery or radiation or it can develop months or even years after these treatments.

How do I know if you have lymphedema?

Lymphedema is often diagnosed by one of your doctors but proactive care is better than reactive care if you know you are at risk. In this case there are benefits to early detection and I recommend taking baseline measurements so that you can take notes of subtle changes in circumference on both the affected and non-affected side. Get a tape measure and measure the hand, wrist, forearm and upper arm at regular intervals (for example 3 cm). Make sure to keep track of those measurements and repeat the process every 2 weeks.

Common symptoms of lymphedema include:

  • Swelling of part or all of your arm, back, chest wall
  • A feeling of heaviness or tightness
  • Restricted range of motion
  • Recurring infections
  • Hardening and thickening of the skin

Benefits of proactive lymphedema care

Lymphedema is a chronic condition but you can help to better control it when it is detected and treated early reducing the impact on your quality of life.

Here are factors that may exacerbate Lymphedema:

Weight/Body Mass Index

Studies have provided evidence that obesity and postoperative weight gain are significant risk factors for the development of lymphedema. Several studies have shown that obesity can increase the risk of secondary lymphedema following damage to the lymphatics.

Other studies have shown that the greater the BMI at the time of diagnosis, the higher the frequency of lymphedema in a 5 year period following the end of treatment. It is best to keep your weight in check with a healthy diet and regular exercise. 

Infection

A quick reminder about the role lymph nodes:

Lymph nodes take note of foreign particles entering specific body regions and signal the body to produce an immune response.  Imagine you get a manicure and your cuticles are cut with non-clean tools. Debris and bacteria will get into your body. The lymph will typically carry those debris/bacteria to the axillary lymph nodes where they would be destroyed and removed. A signal would be then sent to the immune system to stop the infection. If your lymph nodes have been surgically removed or radiated, a cut that would otherwise be harmless might become a serious infection that might spread to your entire body.

The more lymph nodes have been removed or radiated, the harder it is for your body to fight off minor infections.

Whether or not you are exhibiting symptoms of lymphedema, an infection in the body is a potential concern. It is important to check with your doctor if you suspect an infection of any kind.

If you notice a cut or break in the skin on the affected side, it is recommended to:

  • Clean the area with soap and water
  • Apply an over the counter antibiotic cream (eg. polysporin)
  • Cover with a dry bandage until it has healed
  • Check for signs of infection (redness, swelling, heat)

Please seek medical attention immediately if signs of redness, swelling, heat, pain or fever occur. An antibiotics treatment might be necessary to prevent further spreading of the infection.

Other Risk Reduction Strategies

  • Blood pressure should be taken on the non-affected side
  • Avoid sunburns as your body will make extra fluid to fight it
  • If possible, have blood drawn, injections and vaccines on the non-affected side
  • Don’t wear tight clothing/bras and jewellery/watches
  • Limit the exposure to high temperatures (no whirlpool, saunas, steam rooms)
  • Keep on exercising but monitor your arm for any changes!
  • Be careful when getting a manicure to not get the cuticles cut
  • Moisturize your skin
  • Watch for cracks in the skin

Next, we dive into Combined Decongestive Therapy and how its four components can help in the treatment of lymphedema.


Emmanuelle Ravez Gomez is a RMT and Combined Decongestive Therapist specialized in the treatment of lymphedema at her practice The Body Mind Clinic.

 

Most of us don’t think twice about enlisting the help of a personal trainer to work us through our fitness goals so why not take the same approach with a yoga therapist to work on your wellness goals? By helping you move better using breath, stillness and movement in all forms, not just yoga poses, the mentor/coach-style treatment aims to help combat symptoms like fatigue, pain, reduced mobility and anxiety. The goal? To take you from rehabilitation to wellness.

Yoga Therapy is not restorative yoga, nor is it about bending and twisting deeply. It’s for people of all levels of mobility and experiences. It’s also empowering, and here’s why:

Your therapy should be as unique as you.

The unique you-ness is expressed in how symptoms show up. The expertise of a yoga therapist is seeing your movement and breathing patterns, and meeting you where you are at by honouring your full context, including the kind of person you are, what’s important to you and how you are feeling that day. We typically start small and slow by focusing on one joint and one movement at a time, as small and slow movements are more open for awareness building, easier for the nervous system to learn, and progress occurs more quickly. You will be surprised how small movements can release tension. As we progress, we may increase the number of joints involved, number of reps and speed. We may also transition from sitting or lying down movements to more standing movements to build stability and strength.

It nurtures a sense of safety.

When the nervous system is in the stress response mode, breath gets shallow, muscles tighten, the digestive system and sleep get thrown off, and your ability to cope suffers. Anxiety and fear exacerbate the stress response. A feeling of safety is essential for healing, and it’s important to work with someone who nurtures and encourages a safe place both in sessions and in your life.

It helps you listen to your body.

Your body holds more information than you think. Stress, anxiety, and fear are as much physical symptoms as emotional ones and warning signs often show up before any symptoms become full blown. Imagine how powerful it would be to notice these cues, take care of yourself then, and avoid some symptoms all together. The more connected you are with your body, the more you will take control of your self-care and healing.

All parts of you are a catalyst for healing.

Symptoms can be a result of multiple factors, including your expectations, beliefs, past experiences, and movement and breath holding patterns. Pain isn’t always where the problem is. It’s important to work with someone who includes all parts of you, and supports you in taking baby steps towards shifting how you move and how you live your life so you can experience a greater sense of freedom and decreased symptoms, stuckness and disconnection.

Any movement is therapy when done with ease.

Yoga therapy often considers components of yoga poses or other activities you do or want to do, such as tennis, running, typing at the computer, kneading bread and even walking. It can also help deepen the awareness of how you move. Think ease vs. force, easy vs. tight breathing, and feeling the body vs. thinking through the movement. Awareness is key to shifting the movement and breathing habits that contribute to symptoms. With awareness, symptoms can change.

Mina Arakawa is a Yoga Therapist based in Toronto. She offers movement education and lifestyle coaching through one-on-one and small group workshops and classes.

*Note: Always consult your doctor before beginning any exercise program.

Photography courtesy of Melanie Gordon Photography

It’s common for cancer patients to experience sleep problems. In fact, between 30 to 70 percent of people going through cancer treatment have some sleep difficulty. These difficulties sometimes continue even into post-treatment, with about 25 percent of cancer survivors experiencing sleep issues. Breast cancer patients are often affected by sleep problems during and after treatment, and many report struggling with insomnia and discomfort caused by hot flashes at night.

Sleep disorders are common among cancer patients.

Extensive treatment, increased anxiety and depression, pain, and other discomforts during cancer treatment can make it difficult to get a good night’s sleep. Cancer patients may be affected by sleep struggles including insomnia, excessive daytime sleepiness, and restless legs syndrome. Insomnia may be caused by medications used to treat cancer, including steroids. Chemotherapy drugs can cause fatigue. Many cancer patients nap during the day, but this can lead to insomnia at night.

Not getting enough sleep can have especially negative effects for cancer patients.

Sleep deprivation is always difficult, but it is especially tough for cancer patients. Not getting enough sleep can weaken the immune system and make symptoms or negative side effects worse. Sleep deprived cancer patients may also experience weight loss or weight gain, poorer memory and cognitive processing skills, increased irritability and higher risk for depression, and poorer judgement. Not getting enough sleep can make it more difficult to recover.

You may experience night sweats and hot flashes during chemotherapy.

Some cancer patients experience night sweats or hot flashes at night. Overheating can make it difficult to fall asleep and stay asleep. It’s a good idea to lower your bedroom temperature and use breathable bedding and clothing at night. Consider a mattress with buckling column gel if you’re experiencing hot flashes or night sweats. This mattress material is more cooling than memory foam and latex and can help avoid retaining heat.

You can get better sleep with good sleep hygiene.

Good sleep starts with good sleep hygiene. You can train your brain and body to become tired at the same time each night by maintaining a regular sleep schedule. You should go to bed and wake up about the same time every day, and keep up a consistent bedtime routine in which you do the same few things before bed each night. This can signal to your brain that it’s bedtime and help induce feelings of sleepiness that can help you drift off comfortably. It’s also a good idea to keep your bedroom dark and quiet. Be careful about what you do in the hours before sleep. You should avoid caffeine, alcohol, exercise, heavy meals, and screen time just before bed, as these can interfere with your ability to get to sleep and stay asleep all night.

Sleep therapy can be helpful.

If you’re experiencing serious sleep disorders that can’t be resolved with better sleep hygiene, sleep therapy may be necessary. Cognitive behavioral therapy can be used to improve sleep and treat insomnia by addressing your sleep behavior and identifying actions you can take to improve your sleep habits. Some sleep therapies include sleep restriction therapy with a particular sleep and wake schedule and light therapy with light exposure to reset your circadian rhythm.

Sarah Johnson, Tuck Sleep Foundation

Before

Before I got cancer, I kept my hair quite long. I was the type that would freak out when my hairdresser cut it too short, which I considered anything above my shoulders.

I loved my hair. It was my shield – it protected and sheltered me. I connected it very closely with my sense of femininity and sensuality. When I was diagnosed and knew that I had to undergo chemo, losing my hair was one of the moments I feared most.

In an effort to gain control in a situation where I felt like I had close to none, I decided to shave my head the night before chemo. Leading up to that evening, I wrote a letter to my hair:

Hello my lovely hair,

Have I ever told you how much I love you? I think I have, but just in case I haven’t said it enough – I love you.

You are absolutely beautiful. I love how dark you are. I love how silky you look and feel. I love how you look down and in a ponytail. I love the way you slip out of place during yoga and blow all crazy in the wind.

Thank you for your patience while I went through my blonde phase. I don’t know what that was about. I know the constant hair colouring was irritating, especially since I was trying to change you when you were beautiful just the way you were. But I realized my error quickly enough!

I have loved traveling with you. I hope you have enjoyed seeing the world. It’s amazing to think of all that you have seen and felt – sand from various beaches, water from so many oceans and lakes and (most recently) earth all the way from South Africa. Didn’t the wind feel great? I knew you would love it when I let you down in the jeep to blow in the African wind. I think that might have been one of my happiest moments with you. Wild and free, just like the animals. It makes me smile just thinking about it.

We’re going to be saying goodbye to each other soon for a little while. It won’t be forever, but I wanted you to know that I will miss you like crazy. I won’t be the same without you. Not only are you beautiful, you’re my armour. I always felt confident with you there.

I hope you come back exactly as you are right now – dark brown (almost black), straight, silky, full (but not too full). I wouldn’t change a thing about you. I love you so much. I’ll miss you. Come back soon!

Cassandra xoxo

A close friend came over to shave my head and we expected tears and sadness. Instead, there were moments of laughter. Mom managed the playlist and poured the champagne when it was over. #champagnemakesthingsbetter When I look back on that night, I feel as though something in me both broke and was reborn. In that moment, a big part of my innocence was lost. That can be said for many of the experiences you must endure while battling cancer, but that one sticks out in my mind. To have the courage to shave your head… It’s a powerful thing. It’s a way of both losing and reclaiming your power. I’ve always known that we become stronger at the places where we break and I experienced it first hand that night. I’ll never be exactly like the girl I was before I shaved my head and that thought empowers me.

During

My hair didn’t fall out until after my second chemo. I don’t think many people realize that losing your hair is a very slow and painful process. It fell out in the shower in large clumps. I would stand there in tears and watch as my hair poured down the drain. I was terrified to step out and look in the mirror – I knew one day I would come out completely bald.

For weeks I couldn’t touch my scalp. It hurt to lay my head on my pillow and I would wake up each morning to more strands of hair covering my sheets. It seemed endless.

Eventually the pain subsided and the clumps stopped falling. I was not left with a completely bald head like I had anticipated. I had what I called an ostrich head – bald, but with random hairs scattered on my scalp. Lovely!

Style Side Note: I think it’s extremely important for women to find what works for them during treatment. I put a lot of thought and searching into my chemo look. I purchased wigs, but didn’t enjoy wearing them because they were itchy and made me overheat. I was lucky enough to find a shop on Etsy that I loved. The designer sold comfortable yet fashionable chemo hats in a variety of pretty colours and patterns.

In 2015, I came across the #NoHairSelfie campaign and was enraged. For those who don’t know, it encouraged people to use a filter on their selfies that would make them bald (like a chemo patient). As I perused the plethora of selfies, I saw a red. The people looked so happy. They were commenting on how they looked bald – whether they felt cute or ugly. I couldn’t believe that this campaign was created… And by a hospital no less. What stunned me more was that all the participants didn’t seem to see the insensitivity of their actions and comments. I assumed that they were ignorant to the fact that they were glamorizing chemotherapy, although to this day I don’t understand how it went unnoticed. I wrote a blog about the campaign (full post at this link).

After

My hair grew back quickly, and I thank my Italian roots for that. I purchased headbands and loved wearing them to bedazzle my growing peach fuzz. I had the same haircut I did when I was one-year-old and my buzzcut matched my father’s hairstyle.

Breast cancer caused me to reflect on sexuality and femininity in various aspects – hair being a major one. Society displays the ideal woman as having long, luscious, wavy tresses. Don’t get me wrong – that hairstyle is gorgeous. But not fitting the mold made me sad at times. Once again, I felt “other.” Instead of thinking of society, I thought of myself. How did I feel with short hair? What emotions did it bring out in me? Once I looked inward and stopped comparing, the answers came easily. I felt empowered, strong and beautiful. Transformed. I still do.

I’ll admit that I feel more exposed with short hair. In moments of shyness or uncertainty, I don’t have my hair to hide behind. That has turned out to be both a good and a bad thing.

I’m sure I’ll grow it out one day, but for now I’m truly enjoying the short style. I feel like it gives me confidence in a way that my long hair didn’t.

It might sound crazy, but sometimes I toss my head and go to brush my long hair away from my face. At first, this phantom motion hurt my heart – I was obviously still mourning what I had lost. Now? I smile and send a bit of love to the person I was before and thank my hair for coming back to me.

A little while after chemo, I went to pick up a package from the UPS store. The gentleman asked for ID to confirm who I was. I handed over my licence, which I forgot had a picture of me with long hair. At this point, I had super short hair but more than a shaved head. He looked at my licence and back up at me and said, “Oh my gosh! Your hair is so much shorter. It looks great. That must have been quite an adjustment!” I smiled from ear to ear, beaming because he didn’t realize why my hair was so short. I had slipped under the radar and could just be me. No cancer questions, tilted puppy dog sad faces or pitiful looks. I smirked at him and said, “You have no idea.”


Cassandra Umbriaco is a guest blogger for Rethink Breast Cancer. Since being diagnosed with stage two breast cancer at 28 years old, she combines her love of writing with a passion to help women affected by cancer. Check out her blog at cancerunder30.wordpress.com  

Cassandra loves travelling as much as she can, dresses that twirl, anything Disney and her little red Fiat – Luna. 

Living with metastatic breast cancer (MBC) can sometimes trick me into believing that my life is now essentially little more than a series of medical tests and treatments. It can feel like my identity begins and ends with cancer.

Before breast cancer, I was in graduate school and working towards a career as an equine veterinarian. I had goals. I have always thrived in the academic and career worlds—I like pressure, deadlines, working hard, and feeling accomplished.

When I started chemotherapy, I had to leave veterinary school. Even though I later went into remission, I knew that vet school would no longer work for me, so I worked hard to build a freelance medical writing and editing business instead. I felt fulfilled and proud of the business that I built. When I became stage 4, I scaled back my client load but continued to work, determined not to let go of this part of my life. When the cancer spread to my brain, my days in the work force officially ended.

I no longer have the energy to study or work. My days are now scheduled around doctors’ appointments, my weeks around infusions, my months around PET/CT scans. The word “terminal” is never far from my mind; I exist with an expected expiration date that makes long-term plans difficult at best. My primary goal is now to get through each day. My purpose in life is to survive.

In truth, I struggle with feeling fulfilled in such an existence.

Then I began to write about my experiences as a 25-year-old breast cancer patient. It started as a cathartic exercise and slowly turned into something more. I joined writing groups and built a website. I began to feel a sense of accomplishment through my writing that I had not felt since my pre-cancer life.

My writing took an exciting turn about a year and a half ago when I received an email from filmmaker and director Kerith Lemon proposing that we turn one of my short stories into a short film, bare. I enthusiastically agreed. We hoped to create something that would feel empowering for the breast cancer community, to show an honest slice of what it is like to have breast cancer at 25, and to bring some awareness to the issues surrounding metastatic breast cancer.

Bare tells the story of how three of my closest childhood friends helped me shave my head before my first chemotherapy infusion when I was first diagnosed with stage 3 breast cancer. My friends consoled me through my grief, hugged me when I cried, and helped me process the overwhelming fear that had pervaded every inch of my life since hearing the word “cancer”—fear about what would happen to me, how I would look, who I would become, if I would live at all.

In May, I had the opportunity to go to L.A. to watch the filming of bare. Part of me wanted to sob watching this scene from my life being acted out—but I didn’t want to be that girl sobbing on the film set, so I held back—part of me felt numb to it—it was all just so surreal—and part of me felt damn proud of myself. Proud that I had created something worthy of all these people coming together and working really hard to turn it into this beautiful film; proud of how far I have come since that day seven years ago when I wondered if I would ever feel beautiful again, if I would ever know what it meant to be loved by a man, if I’d have the strength to get through all that was to come. Proud that I found the strength, that I continue to find it every day, that even when I feel sick, I get up, push through, and have the experiences that mean everything.

In fact, I am more proud of this film than anything I ever worked on in school or in my freelance business. I believe that we have created something unique, beautiful, and powerful, and I accomplished my part of the project despite living with metastatic cancer, despite constant treatments, despite recovering from brain surgery and brain radiation.

Through bare, I rediscovered a facet of my identity that I thought I had lost amidst all the treatments and scans. It reminded me that my life is so much more than one medical intervention after another, that I am more than a cancer patient. I am a writer, a creator, a woman determined to continue living fully and purposefully.

Originally published in the MBC: YOUNG & STAGE IV, Vol 2, No 4 (Oct 2017) issue of Wildfire Magazine.

Bare was released in October, 2017 and can be viewed here. It was screened at the 9th Annual Lady Filmmakers Festival in Beverly Hills, California. Follow bare on Facebook, Twitter, and Instagram.


Rebecca Hall, co-writer of the short film bare, was diagnosed with stage 3 breast cancer when she was 25 years old, just after beginning veterinary school at U.C. Davis. At 29 years old, the cancer metastasized to her bones and distant lymph nodes. Despite her diagnosis, she continued to work as a freelance medical writer and editor, as well as starting her own outdoor yoga company, Santa Cruz Nature Yoga. Rebecca’s breast cancer returned again in November 2016 and spread to her brain. She underwent an emergency craniotomy, followed by brain radiation. Rebecca is now recovering and lives in Santa Cruz, CA with her husband and her dog, Harriet. Follow Rebecca on her blog, Cancer, you can suck it.

Support throughout the cancer process is critical and I was extremely blessed in this department.

Family and Friends

From the moment I was diagnosed and shared the news, I was surrounded by love and support to an extent I’ve never know (or needed). I continue to be humbled by the number of people who truly cared about how I was doing and still care, several years later. Before my hysterectomy I was worried and asked mom, “What if nobody has prayers left for me?” My anesthetist for that surgery was an incredibly handsome angel – apparently, they do!
Prayers = answered. I chronicled my interaction with him. If you feel like laughing and swooning in equal measure, read Love in the OR at this link.

I knew that having a friend or family member with me at appointments and chemo would be necessary if I was going to make it through. After my first chemo, I was shocked by the immediacy of the symptoms. It hurt… bad. I told mom, “This is gonna kill me. I can’t do this seven more times. I’m gonna die.” She was so calm and steady when she replied, “You’re not going anywhere. You will not die.” I don’t know if deep down she doubted her words, but in that moment it was exactly what I needed to hear. I clung to her confidence and used it to battle my rising fear.

Even though chemo was brutal, I have many fond memories:

  • A friend sneaking a doughnut into my purse to celebrate finishing yet another blooddraw
  • Laughing during the many hours in the chemo chair (half of my chemo sessions were more than five hours… each!)
  • Watching the Flintstones with my grandmother while eating a cold cut sandwich, made just the same as when I was younger
  • Hearing stories of a little girl who prayed for me every single night and prayed to give my doctors strength, too
  • Getting Starbucks from my aunt at the best possible moments
  • Receiving tons of loving messages
  • All the hand holding (there was a lot)
  • Visits from fur friends, because who doesn’t love cuddling a Great Dane?
  Cuddling with Sadie, the Great Dane
Tim Hortons donuts

As with anything, balance is essential – it’s okay to say no if you don’t feel like seeing people on a particular day.

You aren’t obligated to receive guests and your loved ones wouldn’t want to impose either. For me, the weekends following chemo were “off” times and I would only allow family and close friends to visit. The pain was too much to handle and I decided to let go of the guilt. Being your authentic self is so important! And some days, your authentic self is exhausted, sore and needs space.

I think I summarized it best when a friend and I were cozy at my house after chemo. We were laughing about something as I braced myself for the nausea to set in and I turned to her and said, “You know – chemo and pain aside – this has been a really great day.”

The Medical Team

I know it sounds crazy, but I smile when I think about my medical team. Each one was a collaborative relationship that enhanced my knowledge of that step in the process. The warmth and support of both the staff and doctors was unexpected, but very welcome! To this day, I get hugs when I enter their offices for checkups.

The surgeon who performed my double mastectomy was also the doctor who told me I had cancer. Before my last appointment with him, I attempted to gather my thoughts so that I could express to him how much his expertise and positive demeanor meant to me. When the moment came I was overwhelmed. I teared up as he said he was proud of me and wished me “the best of everything good in this life.”  I shook his hand when I should have given him a hug. I’m thankful that it’s his kind face I see when I think back on the moment I was told the results of the biopsy that changed my life. I blogged about the visit, including a chance encounter with a woman waiting for her breast lump biopsy results. Read more at this link.

My plastic surgeon was also a perfect fit for me. We talked about such intimate things – breast size, texture, sex, femininity. We delved into the nitty gritty, but found humour in the most serious moments. I was in my surgical robes waiting to go in for my first mastectomy and reconstruction. It was the most terrified I’ve ever been in my life. (When I was on the operating table, I was shaking so hard that only my ankles, butt and shoulders touched the cold steel.) Before entering the operating room, she needed to do markups on my chest – where is the natural cleavage line? What kind of cleavage would I like? How high should the implant be? She said, “Okay let’s put an X on the left breast” (the one we were removing and replacing). I screamed out, “WAIT… unless X means ‘leave the breast alone.’” She froze and the small group of us stared wide eyed at each other. She replied, “Oh my god she could be right.” We all burst out laughing. Imagine mixing that up?! I can’t even.

The strongest connection I have is with my medical oncologist. I wasn’t exaggerating when I described chemo as brutal. Chemo, no matter the type, is poison. You poison your body over and over to shake up your cells and prevent cancer from forming in the future. In my case, I was young and thought that chemo wouldn’t be aggressive. It ended up the complete opposite – they went hard on me because I was young and they knew that I could take it. I couldn’t have made it through those seven treatments without my oncologist. He saw me at my lowest, most painful and horrible moments. There were appointments where I would try to negotiate ways around the pain (there weren’t any). There were days when I told him that my body couldn’t withstand many more rounds. I went to him with questions and topics for discussion and he always took the time to have an open dialogue. He never missed an opportunity to reassure or support me. I trusted him with my life – I still do – and that trust is what made all the difference. He made all the difference. The day I’m discharged from his care will be a very sad day indeed.

Support Yourself

Your health is just that – yours. Advocate for yourself! Ask questions and discuss the answers. Collaborating helps both doctors and patients alike. I detest pity – I refuse to give or receive it. Moments of doubt, fear, sadness, anger or regret? Sure. Pity? Never. To me, it’s a useless emotion.

Prior to beginning chemo, you must attend Chemotherapy Education.  If you think I tried getting out of it, you’re right.  I decided I wanted to attend on my own. Friends and family had been great about attending all my appointments, and I knew that I could handle this one solo. I walked in to the room and it was full of people – none of them near my age. As usual. I approached the woman with the clipboard and gave her my name. She replied by asking me who I was supporting. I gave her my name again and pointed to the chart. She asked me a second time who I was there to support. I said, myself, pointed to my name on the list and asked for my education package. I was irritated that she didn’t clue in sooner. Her face dropped and she handed over the file. I ended up sitting next to the only other person in the room who didn’t have anyone with them. She was a 50 something going through her second battle with cancer. We were a perfect, somewhat sarcastic, pair – she even took my question seriously when the topic of sex during chemo came up and I blurted out, “REALLY?!”

Having the support of friends, family and doctors is more helpful than words can describe. But perhaps even more important is showing up for yourself. Cancer patients or non-cancer patients – we all have moments in our lives where we’re forced to put up or shut up. Unfortunately, in the case of cancer patients, those moments are plentiful. I’ve felt my blood pour down my back and the intense sting of my skin being cauterized. I’ve tasted chemo and had a drain pulled from my body that was longer than my forearm. I’ve been on a surgical table alone and cold more times than I ever thought possible.

Was I in pain? Did I cry? Was I angry, resentful and terrified? Yes to all. But I showed up.

The point isn’t how deep you dig to find your strength, it’s that you dig at all that counts.

During chemo and the surgeries, supporting myself came mostly in the form of managing physical pain and making extremely difficult decisions. Now, self-care comes in the form of psychotherapy. After quite a bit of searching, I found a therapist who I click wonderfully with and my biweekly appointments with her have become a beautiful part of my self-love routine. She guides, reassures and teaches me even more ways to support myself.  #progress


Cassandra Umbriaco is a guest blogger for Rethink Breast Cancer. Since being diagnosed with stage two breast cancer at 28 years old, she combines her love of writing with a passion to help women affected by cancer. Check out her blog at cancerunder30.wordpress.com  

Cassandra loves travelling as much as she can, dresses that twirl, anything Disney and her little red Fiat – Luna. 

What is lymphedema?

Lymphedema is an accumulation of fluid (lymph) in soft body tissues, due to impairment of the lymphatic vessels.  This build up of lymph causes swelling called lymphedema.

The lymphatic system carries a clear fluid called lymph, which drains out from tiny blood capillaries to lymphatic vessels throughout the body.  Lymph contains water, fats, white blood cells and other components .

Lymph from tissues and organs drains into the lymph vessels and is carried to the lymph nodes where it is filtered.

The collected lymphatic fluid is eventually returned to the blood stream via the subclavian vein.

For breast cancer patients, lymphedema might occur in the arm of the affected breast, hand, trunk, back or chest wall.

How do I get lymphedema?

Cancer treatment can affect the fluid drainage channels of the lymphatic system.

When axillary lymph nodes are removed during breast cancer surgery (with sentinel node biopsy or axillary dissection), or are treated with radiation, some of the lymph vessels can become blocked or can disappear altogether.

This blockage may prevent lymph from leaving the area and will overwhelm the remaining pathways, resulting in a backup of fluid into the tissues.

Lymphedema is a chronic condition. It does not get better with time unless detected and treated early.

The swelling might be so subtle that you can not see it but it might change overtime,  possibly leading to a larger limb/fingers.

When does lymphedema appear post treatment?

Lymphedema can appear immediately after treatment but it generally appears months or even years after the end of treatment.

Statistics on breast cancer patients getting lymphedema, average onset of lymphedema:

It is estimated that 20 to 30% of people will have lymphedema in the arm after breast cancer treatment that include  lymph node surgery and radiation to the lymph nodes.

Read the next post in the series: Can Lymphedema Be Prevented?

Emmanuelle Ravez Gomez is a RMT and Combined Decongestive Therapist specialized in the treatment of lymphedema at her practice The Body Mind ClinicFor more lymphedema info click here.

 

When I began writing this blog post, I thought I could encompass most of the things I wanted to say about dating and breast cancer. It became apparent very quickly that more than one post is necessary. This entry will focus on the early days of dating after cancer.

I’ll admit that I’ve always hated dating. Girlfriends would ask, don’t you love the free meals? And all I could think was, I’d rather pay for my own steak and be with someone I know and am comfortable with. Cancer didn’t make me hate dating… it made me hate it more.

No Time To Date (The Zone)

I was 28 and single when I was diagnosed with stage two breast cancer. I looked upon people who were going through treatment and had partners with such envy. I thought they were lucky to have someone who would love and support them throughout their cancer “journey.” I’ve come to realize that this isn’t always the case – sometimes love and support don’t grow in times when you think they will. But perhaps that’s a blog for another day…

A friend tried to set me up with someone during chemo. I remember her saying, you deserve someone great. I was a bit irritated – I knew/know what I deserve. On a good day, dating is unappealing. On that day, sitting there bald and in pain, it wasn’t even an option. I was in the cancer fighting zone. Dating had no place there.

Months go by… seven brutally aggressive rounds of chemo come to an end. (yay!)
I start to thaw… (take an oncologist-approved trip to Disney World!)
Results are in and I’m a BRCA1 carrier. (well, shit)
Exactly one year goes by… mastectomy and reconstruction #2. (ouch)
I’m too scared to thaw… (so much to process)
Less than one year goes by… hysterectomy. (so. done.)

 

Even writing the timeline in point form exhausts me and it just shows the big picture. What I didn’t list are the plethora of tests and appointments associated with each phase. Everything listed above happened in less than two years. It doesn’t seem possible. I remember coming out of my hysterectomy and feeling completely done – with the pain, making difficult decisions and finding the silver lining in every situation.

Realizing You Haven’t Dated in a Long Time (The Thaw) 

As I emerged from the haze of cancer, I realized many of my friends were in relationships or getting married and I had missed out on what most people consider prime dating years. Just another thing cancer had taken from me – the luxury of time spent as a “normal” (almost) 30 something. I resented cancer and how it made me feel nervous and scared at the thought of having to go through unchartered dating territory on my own.

At first, I focused on how cancer made me different. I questioned how I would tell would-be boyfriends about my past and wondered how they would react. When I looked at the entire picture, dating was daunting and overwhelming.

I wallowed in self-pity for a short time. To pull myself out of it, I focused on moving forward one step at a time. Ironically, that’s exactly how I dealt with cancer treatment. I reclaimed my power and I continue to remind myself that my history is exactly that… mine. I’m free to share what I want, when I want. I made a silent promise to myself to never feel pressured to reveal my breast cancer story. After all, it’s only one part of the big picture that makes me who I am.

Dating Post-Cancer (The Shit… I mean, The Profile) 

As time went by and my mind and body healed, I figured I should get back into the dating game. I was a #survivor. I could handle dating – nothing would stop me! (Except rejection. I hate rejection.)

I knew I wouldn’t write about cancer in my online dating profile, although the thought did cross my mind. The idea of weeding out men that couldn’t handle what I’ve been through was appealing.

Side note: I don’t mean to imply that people who can’t “handle” dating someone who’s had cancer are weak or mean. Everyone has deal breakers and an image of how they see their future partner. But a man who sees my past as a burden or anything less than pure strength has no place in my heart.

All the pictures I selected for my profile were post-cancer, which meant I had short hair.  I always received the same questions – has your hair always been this short? (For a few years.) What made you cut it? (I felt like a change.)

I’ve never revealed my cancer experience before three dates with someone – it became my unwritten rule. I use that time to see if I feel enough of a connection to make me want to open up about it. Any time I have mentioned it, it never goes as planned. I develop a perfect script in my mind beforehand and practice pace and tone, but what comes out is nowhere near as composed or eloquent. My “big reveal” becomes a mini rant and normally goes something like this – “I have to tell you something I actually had breast cancer a few years ago stage two and like things are fine I’m good but I just didn’t know how to tell you so yeah if you have any questions let me know I had a few surgeries but my last major one was a few years ago so that’s nice.” I can’t help but laugh!

There has only been one time where someone online really pushed my buttons. In my profile, I list that I don’t want children. It’s more complicated than that – I can’t have children. Upon learning that I’m a BRCA1 gene carrier, I decided to have a complete hysterectomy. Someone messaged me and quickly asked “what’s with” me not wanting children. I dodged the question because, after only a few messages, my BRCA1 status is none of his business. He was aggressive and commented that I must be selfish. He wondered ”what type of person” wouldn’t aspire to build a family. There were many things wrong with his messages, aside from do you/don’t you want children. It enraged me that he believes that someone who doesn’t want children is self-centred. I wasn’t interested in an online debate, but I was tempted to explain the complexity of my situation to put him in his place. Minutes before I blocked his profile, I explained that he had no idea who I was and that, actually, I couldn’t have children. I hope he had the sense to reflect on his comments, but I doubt it.

I continued (i.e. trudged) on, but it wasn’t without hesitation. Like I said, I hate dating. And having to decide when and how to reveal this part of myself is something that doesn’t come quite as easily as I had hoped. But each interaction, no matter how fleeting, showed me a new part of myself. And for that alone I am truly grateful.

Tips for women going through this:

  • Don’t feel pressured to reveal that you had cancer (to anyone, potential bfs included).
  • Go with your gut – if you want to talk about it, talk about it. If not, don’t.
  • When discussing what you’ve been through, speak from your heart or the words won’t come out right.
  • When in doubt, remember – if they don’t honour you for what you’ve been through, they aren’t the one.
  • You’ve come this far and made it through so much. Don’t settle now.

Introducing Cassandra Umbriaco, a guest blogger for Rethink Breast Cancer. Since being diagnosed with stage two breast cancer at 28 years old, she combines her love of writing with a passion to help women affected by cancer. Check out her blog at cancerunder30.wordpress.com  

Cassandra loves travelling as much as she can, dresses that twirl, anything Disney and her little red Fiat – Luna. 

The Best Tips for Working from Home

Working from home is the dream for many office workers, but it isn’t always what it seems. Working from that home office brings a variety of new challenges with it. Overcoming these challenges is important to maintain the new at home status. Follow these tips from people successful at working from home to make sure you never see the inside of a permanent office again.

Continue the Commute

This seems silly, but consider what happened during that morning commute. You were able to think about your day and spend some time inside your own head. Taking away this part of the day might actually be harmful. Take some time before and after work to switch from home life to work. Go for a walk and think about your tasks for the day, then go back outside at the end of the day to unwind. This transition period is essential in separating work from home and vice versa.

Get That Office

The images of people working poolside from home just aren’t realistic. You need a dedicated office area for your work. This will tell your brain that it’s time to work and allow your psyche to switch to work mode. This is part of switching from home to work; stepping into that dedicated space is symbolic of stepping into work.

Maintain Your Relationships

If you start working for days without seeing another human being, make sure you change that. You need to maintain friendships and other relationships to balance yourself. No one survives on work alone. Make sure to get out at least once a week with some friends or other social group, such as a book club or local church. This also includes work-based relationships whether it’s networking, sub-contractors, or those who hire you. By keeping in touch and building these relationships, you will gain new and diverse work opportunities.

Manage Distractions

One of the biggest surprises for first-time stay at home workers is the number of distractions. Remember that you are still in your home, and you might think it’s only a minute spent changing the laundry or washing the dishes. Avoid this temptation. Reduce other distractions by sending the kids to a sitter, taking care of pets outside work hours, and ignoring the doorbell if it rings. This will help you maintain your productivity.

Maintain Strict Hours

The bane of working from home are the people who think you are now free to do whatever you want during the day. Make it clear that you still have work hours, and you are not free during these hours. Be strict. Do not answer personal calls during this time, and do not answer the door. This will help people learn that you will be devoted to work. If a person would not walk into an office downtown, then he or she must be expected to not walk into your home office.

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Lucy Wyndham spent over a decade in finance as an advisor, but on starting a family, she decided to take a step back and pursue her love of writing and sharing ideas.