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Turban Style and Guitars in the Chemo Room: Lea and Jessica’s Stories

Jessica and Lea are both young Hodgkin’s Disease survivors and met each other through our Sisters-in-Pink peer matching support program. The bond that formed between them was instantaneous and extended beyond their similar diagnosis.

While no two people will ever go through such an experience in the same way, some things were very clearly similar (such as their positive attitudes and mutual love for travel) and even the things that were different (such as how they coped with their hair loss) only brought them closer.

Read more about their experience and hear their individual stories in this shared interview with them. We hope you are as inspired as we are by the incredible journeys of these two beautiful ladies:

1. You were both diagnosed with Hodgkin’s Disease – a type of cancer that many people probably don’t know much about or may never have even heard of before. How much did you yourself know about it before your diagnosis and what did you learn along the way? 

Jessica: Hodgkin’s Disease was completely alien to me!

Both my doctor and my father (who is also a doctor) told me more about it. I found out that Hodgkin’s is a friendly, curable cancer that eventually helped me grow so much on a personal and spiritual level.

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Lea: Astonishingly, my uncle was diagnosed with the same condition a while back despite there not being a hereditary link. He was diagnosed with stage 4 Non-Hodgkin with a need of bone marrow transplant and is fully recovered today, which was far from being my case.

To tell you the truth, I knew it existed, but I needed it explained to me in a way since I wasn’t diagnosed with the same lymphoma, but with a particular one considered to have a higher treatment success rate. I had every reason to be full of positivity.

And of course, knowing my uncle had been through it all before made it feel like I would confide in him.

2. In one sentence, what was the first thought or reaction when your doctor told you the news?

Jessica: My hair…

Lea: Actually, I read the news on the doctor’s lips, while isolated in the imaging room. ‘’Tumor’’ used to be a big word, but right then I knew it was never going to be the same.

So, to describe it in a symbol, it’s the “no voice input button” on the keyboard.

3. No parent wants to hear their child has cancer and no doubt it’s even harder when the person fighting it is that young. How did your parents react/cope during this period?

Jessica: My parents dealt perfectly with the news and succeeded to hide their concerns and worries. They both took amazing care of me, but made sure not to suffocate me.

Lea: No one is ever prepared to hear that their child has a life-threatening illness. At the very least, they knew major changes will occur. They did the very best to give me strength and help me overcome this challenge in the best conditions.

4. What were the best and worst things anyone said or did for you during this period?

Jessica: Turning my chemo room to a very safe and familiar environment where a friend sang and played the guitar, and another held me to sleep (since it was impossible to lay my head while wearing the heavy scalp).

The worst thing that has been said to me was: “How would you know what fun really means? You spend your days sleeping” I took it very badly and actually couldn’t sleep at all that night..

Lea: The best thing I was told during this period was by a colleague that I once randomly saw in a pub: ‘Lea, I love your new style! Did you shave your head for a cause?’ I have plenty of other stories..

As for the worst thing done, it was having a person smoke right next to me. It was a sign of major disrespect.

5. How did you deal with the hair loss resulting from chemo? 

Jessica: I didn’t have to. I used the scalp cooling system: a scalp cap with a temperature of -6 degrees that prevents or lowers hair loss.

The scalp experience honestly made my chemo sessions harder, I kept feeling sick because of the difference of temperatures between my body and my head. But the results were amazing – I kept all of my hair!

Lea: I was put in touch with a Hodgkin’s disease survivor, who was a great inspiration. She encouraged me to shave my head early on as it is less traumatic when the hair begins to fall.

It was hard for my parents, which is why I bought a wig to comfort them. But with time, they got used to the turban/hat idea and agreed that wearing colorful headwear made me look glamorous. I felt more comfortable and natural.

It wasn’t always easy to find different styles of turbans in Lebanon, so I would order them online (from London and the US). I learned how to tie a turban through Youtube with Ascia Akf. I think it’s one of the simplest and most flattering turban styles.

6. How did you manage to juggle work during your treatment?

Jessica: Being a freelancer made it much easier for me. After my chemo session, I rested for 3-4 days and recharged my energy to complete the work I had before the next session.

Lea: I am blessed to have been able to keep my daily routine as close to normal as possible. I was able to incorporate my chemotherapy within my work schedule.

My life didn’t really change other than not being able to do several sports activities or traveling. Maybe I wasn’t as energetic as I would have liked to be, but I managed. It was an expected part of the recovery process: the fatigue from chemotherapy was going to get better over time, the hair was going to grow back and the fear of recurrence was going to subside with the passing of the months.

I kept busy going out with friends, dancing, jogging and getting on with my life again. I knew that soon enough my life was going to get back to normal. If not the old normal, then for sure a new one and my life will resume, despite cancer and beyond it, so why put my life on hold?

7. Did your love life, or perspective on relationships, get affected during this period?

Jessica: My lover didn’t leave my side. I am forever grateful to the beautiful person who brought colors to my life during my tough days.

Lea: My love life wasn’t really affected much, but my priorities in life have changed during my cancer journey. It made me focus more on the important things in life, such as family and other relationships.

8. Cancer is far from funny business, but humor can certainly lighten the mood. Were there any funny moments or stories that came out of this experience? 

Jessica: So many actually!

One of them is when I used to get paranoid every time I showered because of the amount of hair I would lose while showering (which turned out to be normal), so my sisters used to send me pictures of hair they’re losing after their showers to let me know my hair loss is normal. (Is this too weird?)

Lea: Right before my last chemo session, I organized a Cancer Farewell at my place under the theme of “Kissing Cancer Away”. The goal was to gather all the people that stood by my side and supported me throughout my journey.

All the content was customized with kisses (the wall of fame, Instagram booth, cocktail glasses, napkins, balloons, pins, cookies, etc..)

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9. What drew you to take part in the Sisters-in-Pink program?

Jessica: Once my treatment was over, people around me chose to forget and not talk about it anymore. But cancer literally changed my life and I felt the urge to talk to someone who would understand what it’s like to be cancer-free.

Lea: I feel I have a lot to give. I was always socially-active and engaged with different NGOs, but my focus today is on Cancer and it definitely needs to be put into perspective.

10. How was the first meeting with each other?

Jessica: I was very nervous before meeting Lea, but once we sat together, everything went so smoothly and we talked for a couple of hours.

The most important thing that we have in common is that we both chose to take the best out of this experience. And I was very happy she shared her inspiring hair loss experience with me.

Lea: Meeting Jessica was something I was looking forward to as I really needed to share my experience with someone who’d been through the same disease. We realized we had a lot in common, even though some things were quite different, such as the treatment methods.

Overall, we both reacted the same way: we both recovered and are laid back.. and we both enjoy life a little bit more each day.

11. What do you wish more people knew or understood about Hodgkin’s Disease (or Cancer, in general)?

Jessica: It’s OKAY to talk about it! You don’t have to avoid asking us questions; this won’t make us any less sick. I wish people knew that cancer might be the worst thing that happened to some, but it can also be the best thing that happened for others.

Lea: If you have to pick one, this is the one to pick. No taboos or clichés on the topic.

12. What single piece of advise would you give someone who just got heard the phrase “You have cancer”?

Jessica: You don’t always have to be strong; it’s ok to crash sometimes. But know that you will come out of this experience richer than you’ve ever thought you’d be.

Lea: Suffering from this atrocity is a life experience. It’s fighting a good fight.

13. Any life-altering realizations as a result of beating cancer?

Jessica: I’m grateful for every single thing and person in my life, every moment every day.

Lea: More to come.

14. What are the top three things on your bucket list today?

Jessica: Go on a spiritual trip, help people with cancer stay as positive as they can be, and maintain a healthy lifestyle.

Lea:

1. One of my main concerns is to enforce an anti-smoking law in Lebanon.

2. Coaching, coaching, coaching.

3. Traveling.

15. Describe what being a survivor means to you in one word.

Jessica: Will.

Lea: Thankful.

Photographs provided are courtesy of Jessica and Lea respectively. 

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Things I Have Learned Since Finding Out I Carry the BRCA1 Mutation

Written by Catherine B.

“Freeze your eggs!” “Remove your breasts, and get implants if you want.” “Do it as soon as possible!” “The sooner the better!” are not phrases a woman is ever ready to hear or knows what to do with, but that’s my reality. I’m 29 years old and I have spent the last decade of my life dealing with the risk of hereditary cancer.

When I was 19 years old, my mother passed away from ovarian cancer after a very long, brave battle. My mother had three paternal aunts who all had breast cancer. Knowing that breast cancer ran in the family, she had been very careful to have biannual mammograms and MRIs. But no doctors that she consulted ever told her that women who are at risk for hereditary breast cancer are also at risk for hereditary ovarian cancer. In fact, she once brought the subject of ovarian cancer up to a doctor in California after her annual mammogram—but the doctor merely shrugged off her inquiry and stated that ovarian cancer is very rare and not to worry about it.

Over the course of my mother’s illness, we would hear the same (infuriating) words shrugging off those concerns. But these concerns eventually became a reality for us when in 1998, she was diagnosed with advanced ovarian cancer. Her physician stumbled upon it by accident after assuming the severe stomach pain that was causing her to shriek and wail was due to kidney stones, or that maybe she was even pregnant. An ultrasound found cancer in her ovaries instead and she passed away during the summer of 2005.

The following year, I was advised to have a blood test done to check for BRCA1 and BRCA2 gene mutations. I spoke to genetic counselors about my family history and they estimated my risk of carrying either gene mutation to be up to 12%. I was surprised – how could my mother have had ovarian cancer, and her three aunts have had breast cancer, and my risk of carrying a deleterious gene only be 12% at most?!

The results of my blood test proved this estimate was incorrect and I tested positive for BRCA1, which means that I actually have a 56-87% lifetime risk of developing breast cancer and a 45% lifetime risk of developing ovarian cancer. Strangely enough, I was not afraid when they broke the news to me. I thought I was young and had plenty of time to deal with it. But time flies, and I am now at an age where I have to make decisions. I asked my genetic counselor afterwards “So…what do I do now?”

While all physicians I have met with agree that increased surveillance is of the utmost importance, opinions differ regarding what other preventive measures to take. Some gynecologists have urged me to have everything removed—that is, both ovaries and both breasts. Others have suggested removing my breasts now, and removing my ovaries after child-bearing is complete. And with all that, some physicians (non-gynecologists) find these suggestions a bit too extreme, especially because I have not had children yet.

If you are a carrier of either BRCA gene, you will be faced with many opinions, options and questions. It’s very difficult to decide what to do. Sometimes I wonder if it makes sense to chop off completely healthy body parts, especially when I remember that a person may carry a BRCA mutation and never even get cancer in their lifetime. At other times, I become extremely aware of my own mortality and feel that having preventive surgery may be the best route to take. After all, “better safe than sorry.” Another factor in the decision-making is whether insurance will cover the surgeries you decide to undergo. While most insurance companies will cover the removal of breasts if you have a family history, they won’t pay for implants if that is what you want afterwards. I’m really not sure what is the best route for me just yet, but I’m daily weighing all these options and their impact on my life.

If you have a family history of breast or ovarian cancer, I strongly urge you to get tested for BRCA1 and BRCA2. Knowledge is power, and if you test positive for either genetic mutation, don’t be afraid! Feel empowered in knowing your genetic makeup a little better and having a chance to assess your options early on.

At the end of the day, all women are at risk for breast or ovarian cancer, but those of us carrying the mutation have a higher risk, which means we need to get checked more regularly (twice instead of just once a year). As long as we are on top of getting tested every six months and know what our options are, there is nothing to fear and we can remain one step ahead of cancer.

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Time to Talk: Young Adults Chat About Coping with Mom’s Cancer

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“I would like to share this story with you, maybe it will give you some hope.” began one of the participants in Tuesday’s Time to Chat: Coping with Mom’s Cancer – an intimate WhatsApp group chat session dedicated to young adults and led by Psychologist and PhD Researcher Jihane Ghorayeb.

The spirit of helping each other set the tone of the entire chat that also covered various topics, such as:

  • How the roles and responsibilities of siblings shift during mom’s treatment.
  • The need for a breather every now and then, which translates into a need to go out and be with friends.
  • That nagging feeling within that we’re not doing enough, no matter how much we try, and the subsequent guilt that remains even after mom has completed treatment.
  • Suggestions to help mom, such as recommending she write to express what she is going through and reading books to get distracted.

Jihane advised writing as a great coping technique for both child and parent, even if for just 10 minutes each day. It doesn’t even have to be about breast cancer, but anything going on in your life and what you may be feeling – especially if you don’t tend to talk much with others about what’s going on.

A common dilemma was the role reversal that often occurs when a parent is sick. The child starts to feel like the parent in this situation as they start taking on more of a caregiving role and added responsibilities. As Jihane further clarified, this role-reversal is referred to as “parentification” (in psychology) and can be very stressful – both emotionally and physically.

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Another main topic of discussion was the effect chemo had on mom’s emotions and the strain that added to their relationship, resulting in arguments or misunderstanding during an already sensitive period for both. “Understanding that it’s the treatment and not her is important” shared one of the chat participants and is vital advice for anyone going through a similar experience. It’s key to stay by her side and realize she’s going through a lot so emotions are bound to surface. And most importantly, you should remember not to take it personally.

While such an experience forces one to become more independent, you also don’t want to push mom away as she still needs to feel a part of your life and that you need her. Ask her for help if you’re trying to cook something for example and keep her involved in your day-to-day life as this will help you both regain a sense of normalcy and balance.

All-in-all, the chat was very beneficial and everyone got something out of it – which was great. We’d like to thank everyone who took part and especially Jihane for all her help in preparing for the chat (and for connecting all the way from London). We’re looking forward to planning the next one soon!

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Can you relate to the above? If you’ve been through a similar experience and have some tips that helped you cope, please share with us in the comments section below.

If you’re interested in signing up for the next session for teens and young adults coping with mom’s cancer, please fill in our online (confidential) registration form and we’ll be in touch as soon as the next session is scheduled. If you’d like to find out more, send us an email to: info@onewigstand.org or call us at +961 79 158 471.

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Lemonista: A Breast Cancer Awareness Booth with a Zesty Twist!

Breast cancer awareness is a sensitive issue for young people who may not always be ready or receptive to talking about such (let’s admit: scary) things even if they know they may be at risk. So when we were invited to take part in AUB’s Annual Civic Engagement Conference and Fair, we immediately got to thinking of different ways to reach and engage the students so that we may get our message across more effectively.

Less than two years ago, we teamed up with Worldwide Breast Cancer to adapt their brilliant flyers into Arabic (with the translation support of Samar Hajj-Ali) and so we looked no further than those “lemons” as a base for building our booth’s concept on. Lemons are fresh, lemons are fun and lemons make lemonade – we were onto something!

We decided to take the twelve signs to watch for one step further by creating plastic models to represent each one. Students had a chance to look more closely at them, ask questions and try to find a match with some of the actual lemons decorating our booth. Most weren’t aware of all the signs that may indicate breast cancer developing in the chest, besides a lump, so it was an eye-opening experience for all. Lemonista-2370 The highlight for those visiting the booth must have been the interactive “Wheel of Lemons” game we developed that included eight different categories of questions or games to play, based on where the dial pointed. Categories including “Mythbuster”, “Celebrities” and the unexpected “Wild Card” gave participants a chance to win a cup of free, home-made lemonade (lovingly made by Teta Laurice, Loryne’s granny). Lemonista-2378 While the questions ranged from easy to tricky (can you guess the answer of the question in the picture above without seeing the answer?), no one passed on the challenge and eagerly took turns guessing for the right answer. Even those who didn’t win a lemonade were good sports about it and left with something out of the experience, whether it was a chance to ask a question that’s been on their mind or simply learning a new breast cancer fact they didn’t know about before (such as that the left breast is more prone to developing cancer that the right one). Lemonista-2637 The reactions and questions we received during the two days of the fair were honestly the most significant part of the experience for us. For example, the second the wheel marker would stop at “Celebrities”, Angelina Jolie would be the first thing on their mind – which is a great sign of the awareness she’s shed although her reasons for doing it (as a preventative measure rather than a treatment for cancer) wasn’t as clear for some of the students. This gave us the opportunity to engage in a dialogue with them about what she’d done and raise awareness on genetic testing.

Other students had bigger concerns on their mind which would come out in conversation before or after playing the game, including how to self-check and assess their risk if a family member had had cancer. Some even felt comfortable enough sharing a personal experience they may not have had a chance to share otherwise, which was incredibly touching for us. Lemonista-2585 More than 200 cups of lemonade later (over a span of two days), we can safely say that our mission was accomplished and that our “Lemonista” awareness booth had a positive impact on all those who took part, making all the hard-work planning and preparing for it even more worthwhile.

View highlights of our booth in this video montage:

Whether it was a new fact learned, a question answered, a laugh shared – or maybe simply a refreshing drink received – everyone left with a little something and we look forward to spreading more awareness in this way in the future. Where should “The Lemonista” set up her awareness booth next? Keep posted!

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Thank you to AUB and the CCECS team for inviting us to take part in their fair which is key to developing civic engagement for students and building a more positive future. A very big thank you goes to our amazing volunteers Aya, Myriam and Catherine for all their help and dedication, Teta Laurice for preparing all the lemonade for us, and to our talented board member, Mira for her guidance in developing the concept for the booth.

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Know 2 Beat: Engaging the Youth in Cancer Awareness

Awareness campaigns for cancer tend to be (most often) developed by and for adults, but what happens when the tables are turned and the younger generation is the one creating the message for their peers and communities?

That’s what Know to Beat is all about and it is from that base that we teamed up with the Faireface Association, May Jallad Foundation and Lebanese Breast Cancer Foundation (LBCF) to develop a cancer awareness competition that would bring in the creative talents of 15 public schools from the Beirut district.

With the support of the Ministry of Education and the Ministry of Health, we began our journey in the Fall of 2014: preparing for the competition and visiting the schools to introduce them to the project. Each group of students from the schools had a choice of one of five cancers: breast, cervical, lung, skin and testicular cancer – cancers that are not only common in Lebanon, but that would be of interest for the youth to focus on.The students taking part would have to learn more about cancer and its prevention methods by conducting their own research (we provided some helpful links to get them started here), interviewing specialists and then developing campaign materials (a poster, flyer and short movie) to spread awareness to their community.

When we first started visiting the schools, we noticed that the majority of the students didn’t know much about cancer, but that didn’t discourage them from taking part nor did they shy away from the subject. On the contrary: the taboo that often comes with the disease didn’t affect them and they were determined to develop the best project possible. IMG_1031 IMG_0992 IMG_1165 Teamwork among the students was also very evident during the process. The students divided themselves up to each work on a different part of the project. At Amir Shakib Reslan School, for example, one of the students volunteered right away to direct the video his team would submit because he has a passion for filmmaking and would like to pursue it as his future career. Each group (consisting of 10-15 students from each school) had around three months to work on their projects and submit the campaign materials  for evaluation by a carefully-assembled jury.

Once we started receiving the submissions, the enthusiasm was at its peak – we couldn’t wait to see what the students had come up with! It was interesting to see that 60% of the schools (9 schools) had chosen to focus on lung cancer, followed by cervical cancer (3 schools), breast cancer (2 schools) and testicular cancer (1 school). None of the schools had selected to work on skin cancer awareness. The high number of schools choosing to shed light on lung cancer reflects a real concern for the increasing number of people smoking – among the youth and otherwise.

The reason for each school’s choice varied. Second Achrafieh Public School chose testicular cancer: a choice interestingly made by the girls in the group in order to raise awareness to boys and the men in their life. Laur Mghayzel Public School for Girls opted for cervical cancer instead of breast cancer because there isn’t enough awareness on this issue that affects all women – whether its a mother, daughter or grandmother. For others, the project had a personal significance for the students, such as at Jamil Rawas High School, that dedicated their project to a beloved teacher who had passed away from lung cancer. K2BInvite_March11UNESCO_EnglishLast Wednesday (March 11th), the winners of the top projects were revealed and they received their prizes at a special ceremony. Upon entering the hall at Unesco Palace, you could instantly see the eagerness of the students. They were all (rightfully!) proud of their projects hanging along the walls, taking photographs of each other, reminiscing on the process among each other and sharing a laugh. IMG_5925 IMG_5962 And the winners were.. cue the drumroll please!

First Place:

Click on the image to watch their video online.

Click on the image to watch their video online.

First Place:

First Place: Gebran Andraos Tueini Public High School

Second Place: 

Click on the image to watch their video online.

Click on the image to watch their video online.

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Second Place: Zahia Salman Public High School

Third Place:

Click on the image to watch their video online.

Click on the image to watch their video online.

Third Place: Ras El-Nabeh Public High School for Boys

Third Place: Ras El-Nabeh Public High School for Boys

The reactions – from the students to the principal and teachers – was truly priceless! It’s very rewarding to see how this project had such a positive impact on all those involved.

This adorable little model made an appearance to support her school - who ended up winning first place!

This adorable little model made an appearance to support her school – who ended up winning first place!

Actively involving the youth in such preventative healthcare helps eliminate the taboo that comes with cancer at an earlier age while also spreading awareness to their surrounding in an engaging way. The creativity and dedication demonstrated by the students that took part is very promising to a brighter, cancer-free future.