Life Post-Cancer: Dealing with fear

Life works in mysterious ways. Today marks 3 months since I had my last chemotherapy session. Time goes by so quickly. I already have a full head of hair, my eyebrows have made a full appearance, my eyelashes are on the way and the numbness of my fingers and my toes has disappeared.

It’s been quite a journey to get here and I am still not fully recovered from everything my body has been through, but I am almost there. It’s been a few months of a lot of emotional healing, a lot of exercise and a lot of fear. I still have really bad joint pain but the more I exercise, the more I feel my bones get stronger and my muscles grow. I have decided to dedicate a lot of time to just doing the things that make me happy and make me feel good about myself. Through this, however, there has been the dark fear of a relapse. I read somewhere that having had cancer is like living with a gun pointed at you throughout your life and, as dramatic as that may sound, there is a lot of truth to it.

Cancer is not pretty. Chemotherapy made me see myself in a way I never, ever expected to. I dealt with months of not feeling like myself and it was a true mental battle to consistently remind myself that this is temporary and that it is going to make me stronger and I cannot let it bring me down. As I explained in my last post, post-cancer depression is very real and I am still coaching myself through it, taking my emotions in, acknowledging the process of recovery and, most importantly, dealing with a lot of fears. Based on all of these emotions, I had a truly beautiful, open and honest conversation with one of my closest friends this morning. I told him all my fears, I let a lot of it out and he gave me so much clarity on a lot of the confusion I was feeling. He reminded me that I don’t need to know “why” things happen but rather focus on the outcome, on what I can do to overcome it.

Today at around 7 p.m. I read about the relapse of a young woman who had survived lymphoma and had finished chemo a few weeks before me. My heart sank. The first thought in my mind was “what if that’s me?” and the second “I cannot possibly go through this again.” The fear is real. The thought of having to do everything I went through all over again can be paralyzing. It is devastating to think that this can happen when you have just started to rebuild yourself and your life after so much loss. I was upset, and it was at that moment when I had yet another conversation that brought back my sanity. I coincidentally met a survivor who noticed my port and waited for me to come back from my bathroom break to speak to me. It was as if she was reading my mind. She might not have realized the impact our conversation had on me at that moment, but she reminded me that there are people I can share my fears with and who will understand what I’m going through. She also reminded me of the changes I can make to take control over my life and not cave into the fears of life post-cancer.

I want to do more to spread awareness about, not only the prevention of cancer but also the mental and emotional impact that the disease and the treatment has on us. I am working on a few things and I am not going to give into the fear of failure or the fear of a relapse, or the many other fears get the best of me. In the past few months I have managed to rebuild a lot of my self-confidence, I managed to get promoted after going through the most difficult time of my life and to stay uplifted through a lot of hurt. Somedays, you just have to acknowledge how far you’ve come and pat yourself on the back for pulling through with some level of grace. I am doing that now. I am proud of me and of who I’ve become. This has not been easy, I still have a lot of work to do but I am proud and immensely grateful to everyone who has helped me get here – those who have been there listening, supporting and offering me nothing but love. Yet, most importantly, I am thankful to myself for making it this far. I will continue to share my fears – the good, bad and ugly – of my life in hopes that it will make a difference to someone, somewhere, just as much as it has helped me understand and love myself.

As one of my favorite quotes say:

“I will not thank you for this pain. I will not thank you for this destruction. But I thank you for this lesson: My demolition might not be on my hands, but my reconstruction is.” – Najwa Zebian.

Cover photo by Aqib Anwar – @gibsterg
Other photos by Farah Al Sharief – @1nc

Luz 2.0

Is it hard to feel bald and beautiful? Short answer: yes. During treatment, you spend all your energy on the fact that you don’t feel too well physically and so you spend time wishing to feel less nauseous, less shitty, etc. The physical aspect does come in of course, but you don’t have too much energy to focus on it. For me, it is now, after chemo when I really began focusing on the hair, the skin, the desire to look like yourself again…quickly. Life after cancer is a completely new thing. I am not my old self entirely, so I am not “going back” to being who I was, I feel like the experience released a Luz version 2.0 almost. I feel different, I understand life and purpose so differently now – I want to deal with my life differently. I am a strong believer on the connection between your emotional/mental health and illness, I am currently beginning to explore and discover the emotional baggage I was carrying before this – it’s a really tough journey of self-awareness, understanding and forgiveness and it sometimes involves making radical decisions of cutting out and letting things/people/situations go and just holding on to what feels real, true and gives me beautiful feels.

This Thursday will be a month since my last and final chemo session and I already feel so different. My energy levels are amazing, the hyperpigmentation on my hands and feet is getting so much better, the scars on my face are fading slowly, my hair is coming in slowly as well. I am so grateful – I am watching almost a re-birth of myself, I can see how my cells are slowly regenerating and giving my body new life and it feels magical. I am so thankful for every cell, every tissue, every beat – our bodies are resilient and our ability to heal is mind blowing. It’s hard not to be impatient and wish hair would just magically appear from one day to the next but with cancer everything is a process and I learned I must respect that and take it one day at a time. Last night I danced for hours when a few weeks ago I could not get through a song as I could hear my heart beat faster, my breath get shorter and my legs get weaker. I don’t want to forget the struggle as it continues to make me appreciate everything I am able to do now with a big smile.

I had missed writing, but I was busy enjoying life post chemo – throwing myself back into work, planning my holiday and enjoying the fact that my taste buds are back and I can enjoy my favorite foods again. Remodeling my bedroom and putting up photos of all the wonderful people in my life all over my house to remind myself that I am surrounded by love. Carrying out healing sessions so I can do the emotional work I need to do to keep myself healthy and truly content. Giving cuddles to my cat, spending time with my beautiful friends – old and new – and dancing my days away.

I want this blog to help other women with breast cancer, I want to start writing posts about what I did and experienced in a more direct / helpful way. How I managed my nausea, how I managed the dark hands and feed, how I managed the acne and the zoladex side effects, the questions to ask when you have a scare or get diagnosed, what I did and felt when I lost my hair and my eyebrows – I want to write content that will make other women going through the shit show feel less alone. If you know anyone going through this or if you are, let me know what you would like to know and I will gladly help navigate it all by sharing my experience.

In the meantime, I will celebrate turning 32 years old in 2 weeks and I’m so excited to be this new, improved version of myself. With less hair but more courage. A new confident, unapologetic and happier version of me.

I also want to take this opportunity to thank everyone for their incredible support throughout this experience. My friends and family, you’re all amazing and have made me feel so much love – I have no words and I get teary eyed every time I realize how blessed I feel to have you all in my life. Thank you to those who took time out of their life to message me / call me to wish me well. Thank you to all the new friends I’ve made – I am so happy I got to know you all. Thank you to the friends who have helped me document my journey, in film or photos – it is so amazing that you all made time and used your talents on me. Thank you to every single person who came with me to my chemo sessions – you have no idea what this meant to me, you’re all truly incredible human beings!!!! I love you all deeply and I must have done something right in my life to deserve you all and the love you’ve shown me.

Chemo: the shit show

February has been such a messy month. I have been using any “free” time to be at the cinema (my job) and spend time either resting by myself or with my friends. I have also been writing but it has become a bit too personal so I needed to think about what I’m willing to expose and where the boundaries lie. Also, I have only two chemo sessions left. 2 sessions!! I can’t believe I have already done 16, it’s wild. The past few weeks I have done a lot of reminiscing and it made me think of what I wrote after my first session, which I wanted to share with you:

Yesterday I sat for my first session of chemotherapy. The day started with a small surgery to implant the – very aptly called – life port. A catheter that is connected to one of the main veins in your heart where all the chemo drugs will flow through. The drugs are too toxic to go through our regular veins as it can basically ‘fry’ them and cause all sorts if issues. I sat through 7 hours of drugs pumping through my veins. Flushing, anti-histamines, flushing, stereoids, flushing, paracetamol, flushing, Herceptin, flushing, Taxol, flushing, Carboplatin, flushing, end.

It’s hard to describe what I felt. The moment I came back from the port surgery, I was already sensitive. I cried with no warning, I felt vulnerable and weak. I had shortness of breath, I was experiencing things that I had never experienced before. I felt my body in its most human form. Unprepared, afraid and defensive. Since my unilateral mastectomy, I’ve had very little time to absorb everything that’s been happening with me.

It was a short journal entry. I spent the next two days after my first chemo in severe discomfort with palpitations and shortness of breath. After a visit with my oncologist 3 days after my port surgery and first chemo, he sent me to a pulmonologist who ordered an x-ray. The results revealed that I had a pneumothorax, or a collapsed lung. I had been walking around breathing through only one lung the entire weekend and I had no idea. It turns out this is, in fact, a very rare complication of the port insertion, but I had not been warned it could even happen. I was hospitalized for 14 days after that and had my army with me 🙂 – the girls took turns to stay with me every single of those 13 nights. During those 14 days, I had 10 x-rays and had 12 canulas (the hand/arm IV) inserted into the veins of my left arm. At some point, I had two canulas on my arm at the same time because my veins collapse very easily and the nurses would have to find a new vein every couple of days. Fun fact: after the removal of 2 of my lymph nodes during my mastectomy, my right arm cannot be “touched” meaning I cannot have blood drawn from my right arm, I cannot have IV canulas inserted or my blood pressure taken from it either as it can cause “lymphedema.” Those days were perhaps the most painful of this entire journey for me and in spite of that, I felt blessed for those around me.

Here are some photos I took of them and their smiles that would brighten up my every day:

I keep dreaming and thinking about all the things I’m going to do once chemo is over. All the places I want to visit, all the concerts I want to go to, all the music I want to dance to. The past few months have been unreal. I have not been able to travel and, at the moment, I am too tired to socialize or attempt to have a “normal” weekend. I don’t really recognize myself in the mirror either so self-confidence is low. There’s just so much effort I put into my looks lately so I can feel a little like myself. I was watching Ru Paul’s Drag Race and I actually related – from drawing my eyebrows, to putting all the makeup, to considering wearing false stick-on lashes to wearing my wig – it’s a similar life. Funny, I know, but also kind of true. When I take it all off at the end of the day and look in the mirror, I see someone I don’t recognize… in both, a good and bad way. I see someone I love so much more than before, yet at the same time, I have lost so much, that it’s hard to feel like myself. It’s very difficult to explain. All the things that used to make me feel feminine, and attractive even, I feel I’ve lost. And this is not to trigger any type of compliments, is the reality. Imagine waking up one day with no hair, no eyebrows, no eyelashes, scars on your face, hyperpigmentation and dryness in your hands and feet… And also, with an implanted breast and a scar right through it, another scar on your chest, another scar under your arm and another scar right below it. To top it all off, you feel tired, bloated, sometimes nauseated… betrayed by your own body… It hasn’t been easy.

In the past couple of weeks I have taken my time to reflect on a lot of this. It has been a painful journey but one of growth and learning. I know I have to come to terms with it. I know I have to forgive myself for putting up with so much I did not deserve. I wanted to value myself, yet I did not. I allowed some people in my life to walk all over me. I allowed people to take advantage of me. I felt betrayed, abandoned and hurt. I want to forgive though. I want to move past every single person who hurt me. I want to forgive myself for not feeling like I was enough. I want to put it all behind me. I want to be able to trust myself too, my body, my destiny. I want to believe I will never be in this situation again. I want to protect myself, to value who I am and what I have to offer. I want to stop putting myself down or taking responsibility for other people’s emotional journeys. I want to forgive those who did not love me the same way I did. I want to forgive those who did not respect me the same way I did. I want to move past all the pain of not feeling like I was enough. I am enough. I am worthy of love and I deserve all the goodness.

On March 14th will be my last chemo session ever. I am grateful that is almost over – on that day, please do think of me and send me joy and love 🙂 I can’t wait.

World Cancer Day: Bald on, Wig off!

A few days I did an eyebrow tutorial with the wonderful makeup artist, Hindash, in hopes to be able to post it on this blog so it can help other women undergoing chemotherapy and struggling with hair loss. After doing that video, I started to receive a lot of messages of support and love and, in all honesty, I never felt so exposed before in my life. Seeing yourself in the mirror with no makeup to disguise the acne that has attacked my face since chemo began, no hair on my head, half my eyebrows gone and a few eyelash extensions – that thankfully are still holding on – is quite tough. Needless to say, putting all of this out there for the world to see, is even harder.

Today is World Cancer Day and I started to think about all the ways that cancer has challenged me. I mean, it’s cancer, it’s chemotherapy – it has affected every aspect of my life. Every week, I go and have a chemo session not knowing which side effects will show up. Then is also the realization that there are so many things I still can’t do and no matter how positive you are, it’s hard not to wish that things would just go back to “normal”, to how they were. But.. they’re not. This is who I am now, this is what I deal with now. It empowers me, though. Every day, I wake up thinking ‘awesome, I’m alive and not feeling like shit, that’s something!’  Except on the days when I wake up and I do feel like shit. Those days when the nausea is so strong is hard to eat and when you feel like your body is giving up on you a little. When you look in the mirror and you feel sad because this absolutely sucks and honestly, I don’t think I deserved it. Thinking to yourself that you know it could be so much worse but that doesn’t mean it’s good right now.

It was in one of those tough days when I was having a really hard time looking at myself in the mirror, that my best friend, and an amazing photographer, convinced me to do a photo shoot sporting my new shiny bald hair. That morning, we went to a guys hair salon and I got my head razor shaved. I had already shaved my head before then, but I had left a bit of a buzz so I don’t feel so “cancer-y,” but my little hairs were still falling and I decided that it was time to get rid of it all. I had done 100 photoshoots with Angelika before, but this one was going to be different. I knew that she was insisting I do this shoot knowing I needed a confidence boost. Her and my friend Alia dressed me up in beautiful, sparkling outfits. I used all my makeup skills and we started the shoot in this stunning house. I was super shy at the beginning – I guess I had forgotten how much of my confidence was in my hair and posing bald made me feel very exposed and vulnerable. As we started changing outfits and locations, and thanks to Angelika and Alia’s encouraging words in between takes, I began to feel more comfortable. Now, looking at the images (see gallery at the bottom) I realize that I started to gain confidence because I was feeling more and more empowered. Yes, I may not look the same as before, but I feel so much more at peace with who I am now. Yes, some days it is still not easy to look at myself in the mirror – with all the physical changes cancer has put me through – but going through those hard days is how I have been able to find so much more empathy and love for myself than ever before.

When going through cancer, we hear the words “inspiring” and “strong” so often. Since going public with my illness, I started to think about what being “inspirational” means and where strength really comes from. All the beautiful messages I’ve received started to make me wonder – is it because as a cancer patient you’re expected to be depressed and miserable and I wasn’t, that meant that it was something to be rewarded? Having had cancer does not make me better than anyone. It makes it an experience, one I did not ask for, yet one that I am trying to live with dignity and grace. It is also an experience that I sometimes hate and that makes me feel weak and vulnerable. Cancer changed me. It continues to change me every single day. I no longer think about what will happen next year, I no longer plan far ahead – I think about the next chemo session hoping that it isn’t just pure luck that my side effects have been manageable and that it does not happen that in the coming weeks the day will come when everything falls apart and I feel like absolute shit again. That’s what I think about every single week. That’s what I keep hoping for, every week, that my side effects remain manageable so I can remain myself. Even as manageable as they have been so far, I still have to remind myself that I am still me and that this is something I am hoping will help me grow and become more empathetic, more truthful, more authentic. Most importantly, I am hoping this experience will help me love myself more and help me live with the understanding that life is not for granted and that if I’m going through this is to see that silver lining and live with gratitude.

The photos below were taken a few weeks ago – right before I started to lose my eyebrows. A huge, huge, thank you to Angelika Bakou, my best friend since more than 16 years for making me feel so beautiful even in the darkest of days. This shoot challenged my own beauty ideals and I am hoping it can help destigmatize the bald look – because bald is badass. To all my cancer sisters, whether you decide to go bald, or wear a wig, or wear a hat, or whatever it is, know that you’re badass. And finally, fuck cancer.

Today, donate to help us beat this bitch:

Breast Cancer Research Foundation
Cancer Research Institute
Wigs for Heroes

Diagnosis Part II: Killer Boobs

Spoiler alert, I was diagnosed with high-grade ductal carcinoma in situ (DCIS) – stage 0 breast cancer. After the biopsy results, I went to another two hospitals seeking other opinions, everything was consistent, it was DCIS – and apparently, this was good news. The cancer cells were still inside the milk ducts and had not spread to the breast or beyond. The next step was to do imaging: a mammogram and an MRI to determine the size of the tumor and make sure my left breast was “clean” from any cancer cells. All doctors agreed on the same thing, the solution was to immediately surgically remove the tumor from my body. This is when we started to have the conversation about the possible surgeries: lumpectomy or unilateral/bilateral mastectomy.

Polaroid taken by Malda Smadi on our first boob painting sess

I had heard the word mastectomy for the first time circa 2013 upon Angelina Jolie’s decision to do a preventative bilateral mastectomy as a BRCA gene carrier. I never really thought about how traumatic it is or could be to lose your breasts. I started to google images of women who had had different types of mastectomies and realized there is so much to think about. Some women were able to keep their own skin and nipples while some women were not. Some women opted to go flat and not get a reconstruction. Some women reconstructed with fat/muscle and tissue from other parts of their body while some women just had an implant. What was I going to do? The idea of losing one or both my breasts was horrifying. How was I going to look after surgery? What will my scars be like? How does it feel to not have a breast? If I remove just the one, will I be lopsided my entire life? How will this affect the way I view my body, my own self-confidence?

Then I sent this to the WhatsApp support group with my friends, laughing hard:

I went through a lot of imaging before we decided upon my surgery. First, I did a mammogram, a very uncomfortable exam. The radiologist squeezes each breast into two slides in the most uncomfortable positions. It’s not fun. Mammograms are not advisable for women under the age of 40 for two reasons: first of all, our breasts are too dense, and mammograms may not be able to capture any disease if present, and second, the unnecessary exposure to radiation from an exam that may not even be accurate due to the density of young women’s breasts. If you are over 40, however, please do make mammograms part of your yearly screening routine. Many Dubai hospitals will do them for free during Breast Cancer Awareness month in October every single year.

After seeing 3 oncologists and 5 surgeons in both Dubai and Abu Dhabi, I chose to get treated in Mediclinic City Hospital with Dr. Anett Al Hamadi. I needed to do an MRI in order to determine the size of my tumor and also make 100% sure my left breast was in the clear. Here is an interesting fact about breast MRIs, due of the hormone imbalance during our menstrual cycle, I only had a 4-day window to do my MRI if we wanted to avoid “false positives” – cysts and other things that could appear in the image and alter the results. We booked the MRI exactly in that window and I wanted to make sure it was done then. I had had enough of so many tests, and as the result-oriented, extremely controlling person I am, I was frustrated and needed to do this surgery and get this over with.

Unfortunately, 3 days before my MRI, my dad had a severe heart attack and was hospitalized in critical status in Ramallah. I traveled the morning after the incident, crossed the Jordanian border and was with my dad at the hospital by 5 pm. I spent two weeks in Palestine before my surgery and it was a true gift. I was able to witness my dad’s strength and own willingness to live, which inspired me so much in how to tackle my own disease. Yet, most importantly, I fed off my mom’s warrior energy every day, a woman so powerful, yet so humble that she does not realize that it is her spirit that has led my fight against cancer. I am in awe of her and my attempt to recreate her strength is the least I can do in her honor.

I was in a race against time to find an MRI machine in Palestine so I would not have to wait another month to get the process moving. Sadly, Palestine is full of occupation realities, one of them being that there isn’t a single MRI machine in the occupied West Bank suitable for breast MRIs specifically. This really upset me and sent me on an existential spiral of frustration: why is it that when it comes to female-specific disease there is no real effort to ensure there is the right equipment/tools for diagnosis? I had to resort to a medical agency to get an appointment in an Israeli hospital in Jerusalem. I ended up doing my MRI on the night after the Sabbath, Sunday at 1 am accompanied by a very, very distant family member who was the only one with a Jerusalem ID. Once again, occupation realities, my parents – and most of my family – are not allowed into Jerusalem without a special permit and my brother, who flew all the way from Colombia because of dad’s and my condition, was not allowed into Palestine at the Israeli checkpoint. We truly take freedom of movement for granted, don’t we?

I sat inside that MRI machine on my knees for 40 minutes. I was breathing very slowly in a conscious attempt not to move at all and barely listening to Eric Clapton, the loud sounds of the machine drowning the melody of Leila somewhere on the background. I was thinking about how grateful I am not to be claustrophobic. MRIs must be a nightmare for those who are. In my mind, it was just one more exam to get through. One more step closer to getting rid of this stupid cancer.

I came back to Dubai ready for my next step. I would spend the next two weeks waiting for the results of my MRI and of my BRCA gene test. At some point through the diagnostic process, I was advised to do the BRCA gene test in order to make sure I was not a carrier of the BRCA gene, which if you’re a carrier increases your possibilities to develop breast and ovarian cancer. The test is expensive (US$1,800 approx.) and not covered by insurance. I decided that peace of mind was more important and did the test with IPS Genomix in Dubai. The results take 5 – 6 weeks to come back.

I was already very impatient, I just wanted to know what was going to happen. In almost comedic fashion, I received the MRI results in Hebrew. I had to send them back to the agency for translation, which took another few days. In between, however, I received the first piece of good news: I was BRCA negative. That was a huge relief. It meant I was not genetically predisposed to get cancer. It also meant, however, that I had nothing to blame it on. The “why” began attacking me again and this is when I decided to see a therapist once a week and also began doing some energy healing sessions in order to get some perspective over the diagnosis.

Focusing on my mental health during this time was very important to me. I had to get past a lot of demons before I began tackling my disease. I felt that I needed to understand “what for” rather than “why” this was all happening to me. It was that small change in semantics that made all the difference. No, I still don’t think cancer is a gift. It is not a gift. Cancer sucks and going through it is a bitch and a half. It just meant that I would focus on what this experience brought to my life in a more positive way. It still means that I am looking for the meaning beyond it, taking it day by day always with a little bit of humor in between.