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.

JessicaPetScan

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..)

KissCancerAway_01

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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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Behind-the-Scenes of “The Bald and the Beautiful”

A few weeks ago, we came across Katie’s personal breast cancer blog, cleverly entitled”The Bald and The Beautiful” on the Canadian breast cancer blogging platform Facing Cancer Together. Her light-hearted and descriptive writing style takes us along with her on the journey of recovery. Part of the healing process for many survivors is putting it in writing, and reading her blog you know she’s not holding back. We took a few minutes to interview Katie to find out more about her story:

Katy didn’t have a wig stand during treatment, so she sent us a photo of how she kept her wig in place – on a glass vase. Does the trick doesn’t it?

1. How did you find out that you had breast cancer? 

I found a lump in my right breast. It was the size of a golf ball and I could not only feel it, but also see it when I took off my bra. I told my family doctor about it when I went for my yearly physical and she ordered an ultrasound, which showed no reason for concern. A follow-up appointment was booked three months later when another ultrasound was done. At the follow-up appointment, I also had a mammogram and it was the mammogram that showed reason for concern. I had a biopsy 13 days later and 11 days after that I was diagnosed with stage 2 breast cancer.

2. What was your first thought upon hearing the diagnosis?

My very first thought was one of disbelief. I didn’t think you could get breast cancer at 26 with no family history of it so to be honest, I wasn’t shocked – I just really didn’t believe it. I guess that was followed by numbness; it took a while to set in that I actually had cancer. Actually, I’m not sure if it ever really set in. It still, to this day, feels like I’m lying when I say “I’ve had cancer.” I also felt embarrassed in the very beginning, even though I had no control over what was growing in my body. I felt embarrassed and didn’t want anyone to know in the first couple of weeks.

3. What was treatment like?

Chemo is just a word until you’re the one who’s about to go through it. The night before my first treatment, I was so overwhelmed with the ‘unknowns’ that I was about to face but the nurses made me feel comfortable as soon as I walked into the cancer centre. Everyone reacts differently so I was aware of what MIGHT happen but no one could tell me for sure how I would react.

“I just kept thinking, if I feel this bad, imagine how the cancer must be feeling.”

I had 6 chemo treatments and I reacted differently to each one of them. There were days when I was throwing up and other days when I wasn’t. There were days when I needed to have three or four naps throughout the day and there were days when I was awake from morning to night. I just kept thinking, if I feel this bad, imagine how the cancer must be feeling. Treatment is awful but they know it works and if chemo was what was going to kill any cancer left inside of my body then sign me up.

4. Is breast cancer genetic in your family? If not, how were doctors able to explain why you were diagnosed with it at such a young age? 

Breast cancer is not genetic in my family. My tumour was removed and then tested for three things (the same three things that all breast cancer tissue is tested for); estrogen, progesterone, and Her-2. My tumour ended up being estrogen positive, meaning it was estrogen that was causing my tumour to grow. I am currently on a drug called Tamoxifen which is a form of hormone replacement therapy that I started after chemo ended and I will need to take it for the next five years.

The ‘why’ of my diagnosis wasn’t really focused on, my team of doctors seemed to focus on getting rid of the cancer and focus on the necessary treatment. I’ve spoken to other cancer patients who have said the same thing, it doesn’t seem to matter why you have cancer, it just matters that we get rid of it.

5. What helped you recover during and after treatment?

There are three things that helped me with treatment.

The first thing that I recommend to everyone going through treatment is water. Drink as much water as possible, especially during treatment. You are having poison put through your veins and the best way to cleanse your body is by drinking as much water as possible.

“The first thing that I recommend to everyone going through treatment is water. Drink as much water as possible, especially during treatment.”

The second is sleep. It is amazing how tired you can get from chemo. You need to sleep as much as possible. When you get tired, your body is telling you to sleep and it is your job to listen to it.

The last thing, but certainly the most important, was my family and friends. When you have cancer, everyone around you feels so helpless so when they can do something to help (do your laundry, cook some meals, paint your nails, etc.) it not only helps you out but it lets them help in an otherwise helpless situation.

So to summarize, drink lots of water, stay rested, and surround yourself with family and friends.

6. Were you able to meet other survivors your age and how important is the role of support during treatment?

When I was first diagnosed with breast cancer, I thought I was alone (you just don’t hear about women in their twenties having breast cancer). But, after 3 months, I started writing a blog for facingcancer.ca and found out about two other women only a couple of years older than me who had been diagnosed with breast cancer too. I have since met a handful of women who have had breast cancer in their twenties and thirties. You never hear about it but unfortunately, breast cancer has become a reality for many young women.

“Chemo can cause your mind to play some pretty mean tricks on you.”

The term ‘support’ carries a variety of meanings. I never went to a support group but had incredible support from my family and friends. To be honest, I think I would still be hiding under the covers with the lights turned off if it wasn’t for my support system. Chemo can cause your mind to play some pretty mean tricks on you; the psychological part of treatment is overwhelming and I was not prepared for it at all. I was reminded by one family member that it would all be a memory one day soon. I just kept reminding myself of that after every treatment and now it IS just a memory. Support is essential during treatment!

7. Did you wear a wig and why did you choose to do so?

I purchased a wig before my hair fell out. I wasn’t sure what I was going to do. I wanted to have it just in case there were days when I wanted to have hair but I never once wore it. I went through chemo in the middle of summer and it was just too hot. And, although I really liked the wig, I was confident enough not to wear one, so why suffer with the heat?

I wore my bald head around like a badge of honour. I wanted people to know that just because I have cancer doesn’t mean I am stuck in bed for the duration of treatment. I can go to the grocery store, take public transit, and go out for dinner just like every one else.

8. Would you like to share any experiences with wearing a wig?

I had a bright pink wig that I got within a few weeks of being diagnosed. I love the colour pink and it also happens to the colour of the breast cancer ribbon. Anyway, I wore the wig three time. The first time was at a benefit dance that my friends threw for me. By the end of the night, I had taken it off because it was so hot and so many of my friends tried it on throughout the night. It was nice to watch other people wear it because it seemed to bring everyone together that night. The second time was at a wedding. At that point in my treatment, I really stood out because I was completely bald so because I was going to stand out anyway, I might as well try to look good. I wore the pink wig throughout the ceremony, dinner and only took it off near the end of the dance. Lastly, I wore the wig to my final chemo appointment. Because I had worn it on two other joyous nights, why not wear it to my last chemo treatment too? I’m glad I did because all of my pictures from my last treatment day are of me with hair (even if it was bright pink).

9. How has breast cancer changed your outlook on life? 

“I am still planning for the future however I think I’ve started living for the present which is something that I didn’t necessarily do prior my diagnosis.”

Well, at the cost of sounding too cliché, I think I have realized that life is so precious and that we are only on the earth for a finite number of years. I try to keep in mind that if today was the day I was supposed to die, that I made yesterday worth living. In other words, I am trying to enjoy the day to day small victories and the simple pleasantries in life. I am also trying not to pass up any opportunity that will make me a better person. I am still planning for the future however I think I’ve started living for the present which is something that I didn’t necessarily do prior my diagnosis. I was so worried about the next week, next month, and next year instead of focusing on right now. Cancer has taught me that there may not be a next week so make this week worth living.

10. Do you have any tips or advice for other breast cancer patients your age about to undergo the same thing?

Well, if I could tell a young woman who was just diagnosed anything it would be;

  • You’re not alone, there are other young women with breast cancer who understand what you are going through.
  • Don’t try to control what you can’t control. Cancer and treatment affect our body image, fertility, our hormones, our hair, etc. and instead of trying to control that, try to control your reaction to it. Surround yourself with good people and they will help you cope with the devastation.
  • Allow yourself to have bad days. I don’t think anyone can get through a cancer diagnosis without some tears, and some anger, and some frustration but what I always said was, I have to go through this whether I want to or not so I might as well try to make it easier on myself by putting a smile on my face. I didn’t have very much control over anything once I was diagnosed with cancer so if my attitude is one of the few things I do have control over then I’m going to try to stay positive for as much of this journey as possible
  • You have to learn to excuse other people sometimes because they aren’t aware of what they are saying. If someone says “Oh, it’s just hair, it will grow back” (which I was told many times), they are trying to make you feel better; what I wanted to say was “Oh, so you’re going to cut your hair off with me then?”. Many people have told me about someone close to them who has died from cancer while I was going through treatment as well. Many times people are trying to relate and instead end up offending you.
  • Finally, although it may feel like cancer has become your life right now, remember that you are more than your diagnosis and you are more than cancer. Although your cancer diagnosis stays with you forever, a lot of this will be a memory one day.
* BONUS QUESTION (FOR THE GUYS) *
During the interview, we found out that Katie has a very supportive boyfriend who’s been by her side throughout her journey of overcoming the disease. Oftentimes, breast cancer awareness focuses on the woman but it’s also important to show how men react when their loved ones are growing through this. We asked Katie the following question to help any man reading this gain some insight into how they can help their partner going through a similar experience:
How did your boyfriend react? How important was his role and what did he do to make you feel better?

My boyfriend is a pretty incredible man. From the day of diagnosis, he has been by my side and never once said he didn’t want to do this anymore or threatened to leave me. He was scared for me in the beginning but once we understood what needed to be done, we became a team. Only six days after my diagnosis, I came home and there was a gift bag on the kitchen table. It was a gift from him to me. I opened it and inside was a journal. He wanted me to write everything I couldn’t tell him in this journal and he promised never to read it. He assured me that he was always there for me, but if there was anything I couldn’t tell him, I could now write it down in this journal. I think if it wasn’t for him, I would have given up a long time ago. He was my strength when I was too weak.

All through treatment he was doing anything he could or that I asked him to to make me feel more comfortable. He came home early from work when I was sick, he took me to every doctor’s appointment and came to every one of my treatments. I didn’t have a choice in having cancer so I had to deal with it but he had a choice and he chose to stick by my side and be my strongest support through the hardest time of my life. He loved me with two breasts and now loves me with one. I actually think we are now closer than we were before I was diagnosed.

Click on the image to visit Katie's blog.

We’d like thank Katie for sharing her experience with us. Be sure to check her blog and daily posts on “The Bald and The Beautiful“.