Author: jessicafilloon

My Friend Rebecca

.Reading time 6 minutes.
I met Rebecca through the Kick Ass Cancer Mamas Facebook group.  Here is her story…
Tell us your story /stats:
I was diagnosed at the age of 38. I was 8 months pregnant with my first child, at the time. I happened to feel the 9mm lump in the underarm area on my right side and had my OB check it at my regularly scheduled appointment the following week. From there, I went to the breast health center for a day of checks that included a mammogram, ultrasound, and biopsy, and was diagnosed with Stage 1 Triple Positive cancer a few days later. Because the cancer was so small but also triple positive, they gave me the option regarding chemo and radiation. I decided to hit it with everything. My thought was that if I did everything possible to combat the cancer and it came back, at least I would know that I did all I could. But if I chose not to do chemo and radiation, and the cancer returned, I know that I would never forgive myself for not doing more.
C aside, tell us about yourself. What makes you, YOU!
What makes me, me…I think if I had to narrow myself down to a few sentences, I would say that my openness, my empathy and love for others, and my thoughtfulness, are my most defining characteristics.
What went through your head when you were first diagnosed?
“How can I have cancer? I take such good care of myself. How could my body betray me in this way?” I really just couldn’t believe it. I was definitely in shock.
What are some of your personal coping skills during difficult times?
I think I cope with difficult times by staying busy, and by using humor to make light of situations. Pot helps too. And yoga and running.
What have you learned about yourself since dx?
I have learned that I am more comfortable when I can manage some sort of control in any given situation. I’ve also learned how to let go of control and how to have a certain level of comfort when I am not in control. I also have learned how much strength there is in allowing yourself to be vulnerable. Opening up about how you feel and what you’re going through takes a great deal of strength.
What do you believe is a common misconception about being diagnosed? Or something that you’d like the general population to know about C.
I think that many people, myself included, experience a great deal of shock and trauma upon diagnosis. It’s so hard to believe that this has happened to you. I think it’s important for people to know that it can always happen and also to know that the treatment is only a piece of the experience. Cancer diagnosis is a life-long struggle and the fears and emotions that go along with it are complicated and eternal. There are also many physical side effects that accompany the post-cancer treatment.
If you could send a message to yourself from 10 years ago… how would that go?
Stop eating so many carbs, and try to lose the stress. Eat more vegetables, cook more whole foods. Get sleep. Don’t open a restaurant. Also, make the most of the great times in your life. Try harder to enjoy those moments and to be fully present (still a struggle).
What are you passionate about? Is this different than what you were passionate about before dx?
I think that the biggest impact that my dx had on me is my commitment to healthy eating and my adoption of a vegan diet. This has also impacted my family and my daughter has been raised vegan so far as well. I am very passionate about food, healthy food in particular. I have also subsequently learned a great deal about the food industry and have made a commitment to contributing to our ecosystem in a more positive manner.
Whenever the day comes to travel to the “great beyond”, what do you hope people remember about you?
I hope that people remember me for being brave, kind, and loving.
Would you like to share one of your shittiest moments/memories? The raw side of C.
I think that the hardest part for me is that the first couple years of my daughter’s life are a bit blurry. I’m sure that some of that is transcendent across all new mothers but I attribute much of it to the chemo and the shock of my coinciding diagnosis. I wish I could go back and have that time with her, and be able to focus all of my energy on being a mother of a newborn. But I will never get that time back and that’s something that I always carry with me.

My Friend Jenny

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I met Jenny via Instagram, I reached out after seeing a few of her posts.  Here is her story…

Tell us your story / stats:

I was diagnosed with Triple Negative Breast Cancer at 28 weeks pregnant and just a couple of months shy of my 34th birthday. I had discovered the lump around 20 weeks but chalked it up to normal pregnancy stuff. The lump quickly doubled, then tripled in size, measuring at 9 cm at the time of diagnosis. It was estimated that I was stage 2B (I wasn’t able to do more testing until after the baby came, that test and the surgery pathology confirmed the staging) with a grade 3 tumor. I tested negative for the BRCA gene, but a variance of unknown significance, RAD51C, came up in my report. It has a connection to both breast and ovarian cancer so my doctor recommended that I remove my ovaries before age 40.

 

C aside, tell us about yourself. What makes you, YOU!

I’m 36 years-old, living in Baltimore, MD with my husband Jesse, our 2-year-old daughter Chloë and our cat Cash. I’m currently a freelance writer with a background in journalism and some marketing and communications work. I love photography, yoga and gardening.

 

What went through your head when you were first diagnosed?

“But, I’m pregnant…” I don’t remember a whole lot after I heard the doctor tell me that I had cancer over the phone. It was noon, I was at work and I thought my doctor was just going to say that the lump was benign but it needed to be removed but that it could wait. I never even considered the possibility that it would be anything beyond that. But that’s what he said and I suddenly realized that I had to tell my husband. It was heartbreaking to tell him and then have to say the words again to our parents.

 

What are some of your personal coping skills during difficult times?

Yoga, meditation, cannabis, acupuncture, time with family and friends, I could go on but the bottom line is: self care has been an important part of my healing journey during and beyond breast cancer. These are the tools in my kit 🙂

 

Tell us about your support system. Or lack of. Where do you get your support from?

My friends and family are amazing. I would not be here would it not have been for their love and support. It sounds like a canned response but it is so true. Tragedies, emergencies—that’s when people really step up and contribute in unexpected ways. Our friends got together and bought us a deep freezer so we could store the hundreds of ounces of breast milk that friends and friends-of-friends had donated to us. People brought frozen meals or sent cards with words of encouragement. All of these things helped in some way and also let us know that there was a larger community looking out for our little family.  

I also have found a lot of support in the cancer community, both through social media (Instagram and Facebook) and also locally at the hospital where I was treated (Johns Hopkins) and support centers in the community such as HopeWell. I feel an immediate connection to other survivors. It’s like service members who have seen battle—there’s just something in their eyes: they get it. A major positive for me in this whole experience with cancer has been the friendships I have made. I would not have met a lot of these amazing people had it not been for such a terrible commonality and that is something to be positive about!

 

Many people are unaware that you can do chemotherapy while pregnant. Thoughts and personal experience?

I am always quick to tell people that chemotherapy is safe while pregnant! I HATE that horrified look on people’s faces when I tell that I went through one round of chemo while I was pregnant. The truth is that it is totally safe and there are tons of studies out there to back that up. The molecules are too large to pass through the placenta and therefore the baby is basically unaffected by the drugs.

 

What have you learned about yourself since dx?

I’m still learning! Breast cancer challenged me to my physical and emotional limits. It taught me that I am a lot stronger than I had ever thought but also that life is precious and there are no guarantees for tomorrow. I am still fearful of a recurrence but I am slowly learning to live with that fear and know that it will get better with each day. So trying to stay as present as possible is very important to me.

 

What do you believe is a common misconception about being diagnosed? Or something that you’d like the general population to know about C.

Cancer isn’t a death sentence and being diagnosed with cancer isn’t a result of anything that the people “did.” Cancer happens to people of all ages and backgrounds.

 

Thoughts on the pink… 

It’s MARKETING. And pretty damn effective at that. But seriously, most of that shit doesn’t go to any research, it’s just a ploy to sell junk and fool people into believing that they’re donating to a cause. If you actually want to do some good in the world of breast cancer, donate directly to organizations that actually FUND research, because that’s what is going to save lives. There still isn’t a cure for breast cancer and research is so vitally important, 40,000 women died from it last year.

Some organizations that I donate to include: Metavivor, Triple Negative Breast Cancer Foundation, Young Survival Coalition, American Cancer Society and HopeWell Cancer Support (it’s a local support center here in Baltimore).

 

Where are you at in life now? Mentally, physically, emotionally…

At this moment I am 2 years from my diagnosis and I feel as though I am in transition. I learned a lot about myself through cancer treatment but when that ended, I struggled with the “what next” part. I struggled with survivor guilt and anxiety of a recurrence, I still do, but for awhile it was overwhelming and debilitating.

I have a follow-up reconstructive surgery scheduled for January that will hopefully fix some of the sagging and rippling that has been happening on my right side. I love my plastic surgeon and I think she has done an amazing job but implants are a pain. They just feel so foreign and I don’t think that will ever change for me. Sure they “look” great, but I miss my breasts.    

 

Do you have any lasting side effects- mental, physical, etc.?

Right now I am still struggling with joint pain, fatigue and anxiety.

 

What are you passionate about? Is this different than what you were passionate about before dx?

I am very passionate about yoga and cannabis, both used together and separately. I had an interest prior to my cancer diagnosis, but throughout treatment I leaned on both yoga and cannabis to heal my mind, body and spirit. I would never tell anyone to use alternative medicine or integrative modalities in place of traditional medicine, but I think it’s important to explore alternative means of healing. Terrible side effects come along with medical treatments and to combat those, the doctors will prescribe medications that often come with their own side effects. It’s a vicious cycle. And one that can be stopped by integrating alternative methods of healing. Yoga, meditation, nutrition, acupuncture, reiki, and yes, cannabis—all of these aided my healing during an extremely difficult time and helped me recover both mentally and physically from cancer treatment.  

 

Do you have any short term or long term goals that you are actively working towards?

Right now I’m slowly picking up more freelance work and thinking about going back to work in some capacity. Being home with Chloe is really important to me right now, especially because she’s still so young but I also have some ideas bouncing around in my head that I am interested in pursuing. So stay tuned 🙂

 

Do you have a favorite quote, mantra, phrase, or curse word?

The past and the future don’t matter. All that matters is this moment. And it is PERFECT.

It’s basically a reminder for myself to stay centered and exist in the present. I’m still working on this though, it’s definitely easier said than done!

 

Whenever the day comes to travel to the “great beyond”, what do you hope people remember about you?

I hope that they remember a loving and caring friend, wife, mother, daughter who wasn’t afraid of taking risks or trying new things.

Honestly the most important thing to me right now is being a good role model for my daughter.   

 

Would you like to share one of your shittiest moments/memories? The raw side of C.

There are so many things! Haha at this moment the fact that I don’t have nipples and have little to no sensation in my breasts has been a source of stress. When you’re in fighter mode you’re willing to do anything you can to slay the beast but when the battle has been “won” and life moves on. There are very real scars and changes that are permanent and that is something that takes a while to adapt to and finally accept. In terms of sexuality, losing breasts/nipples/sensation, it’s an adjustment. And at times that reality can be heartbreaking.  

 

What’s the latest happenings in your life now? 

Right now I’m working on putting an updated portfolio together and searching for my next career move. I wrote a series of articles about integrative medicine and breast cancer and they will be published in October. I’ll be sharing everything through my website, jennyleyh.com.  

My Friend Amanda-Mae

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I met Amanda-Mae after she found my blog on Google.  Here is her story…
Tell us your story / stats:
I was 28 in February of 2017 when I was diagnosed with stage 2, Grade 3 Triple Negative Breast Cancer. I first noticed my lump 5 months prior to diagnosis, but kept brushing it off as a clogged milk duct. My son was only about 4 months old when it popped up and had a serious struggle with breastfeeding, so it was totally logical to me. (P.S., that was not actually logical – it kept growing, hurting and was not at all “normal” for me – should have checked that out a lot sooner! But yanno, hindsight…)
What went through your head when you were first diagnosed?
My first thought was that I was going to die. I really, really thought I was going to die…and soon. Maybe a week, a month, but definitely within the year. I spent every waking moment on Google reading statistics and every other scary thing I could find.
Tell us about your support system. Or lack of. Where do you get your support from?
My support system was absolutely incredible. My boyfriend, his family, my family, my coworkers…all of our friends…everyone was just so amazingly helpful and caring. There were people I haven’t talked to since childhood and people I’ve never talked to *at all* offering to do anything they could to makes things easier for us. All of those people kept my head above water through the hardest parts of treatments.
What do you believe is a common misconception about being diagnosed? Or something that you’d like the general population to know about C.
Susceptibility and survivablity. I think those are huuuge misconceptions. I ignored the most prevalent sign that something was wrong because I had the ill-conceived notion that I was “way too young”. I was petrified when I was diagnosed, but prior to that any time I ever heard of someone having breast cancer, “death” was never what went through my head. It was usually a self contained comment in my head of- “wow that sucks, but at least she won’t die”. I’m mad at myself for ever thinking that and I’m mad that I wasn’t alone in those thoughts. Breast cancer absolutely DOES kill. Young and old, male and female, it can kill you. I’ve seen that a lot, too much actually…
Would you like to share one of your shittiest moments/memories? The raw side of C.
Hands down, the hardest thing about all of the C stuff…was doing it while I had a baby at home. Not the exhaustion part, but the mommy-baby connection with my own child. In my mind, there was no way in hell I was going to luck out enough to survive. And since I was going to die anyway, I wanted my son to be affected as little as possible. His dad did everything for him. Bath time, wake ups, night time feedings….I tried to make sure he wouldn’t realize I was gone when it finally happened. That part still kills me. I still have a really, really, reaaally hard time with that. If I could go back in time, I would have done the exact opposite, but it was so hard to see anything positive happening at the end. I missed a lot, nearly everything, of my first and only son’s “babyhood” because I didn’t want him to be sad and confused and searching for me when I was gone.