Life Post Cancer, Young Adult Cancer, Journey, Survivorship,

I’ve got GRYT

The past few days have been a whirlwind of AH-MAZING experiences and accomplishments.  My co-presenter and co-author Francesca and I presented our abstract on AYA Perspectives on Fertility Preservation Conversations with Healthcare Providers at the American Psychosocial Oncology Society (APOS) conference in Atlanta, GA on Thursday, February 28th. Plus, I got to meet some young adult cancer “celebrities” in-person.  I’ll get to that in a few moments.

I had no idea what to expect at the APOS conference. I’m new to this side of cancer and research. I felt a tad outside of my element but tried to give the appearance of calm, cool and collected. Francesca and I were the third to present. I confess I was getting more and more nervous waiting for our turn to step up to the podium.

I knew our presentation would be authentic, informative and emotional. I’m beyond thrilled that the audience felt the same. Francesca and I bounced off well with each other. All that rehearsal and mouth warm-ups from my theatre days helped. I felt this surge of energy and focus as soon as it was my turn to speak. We were the only presenters who were asked multiple questions from the audience.

I could see some people moved to tears. It is honestly one of the BEST moments and accomplishments in my cancer experience as a writer, speaker, and advocate for young adult cancer thus far.

I must tell you about the three memorable and outstanding moments aside from being a presenter. I FINALLY got to meet the founder of Lacuna Loft, Mallory, in-person AND Aerial who partners with Lacuna Loft and is the program director for the GRYT Health app. As soon as I saw these two powerhouses, I actually got teary-eyed. I have been talking with them, especially Mallory, for two years! I still can’t believe I got to actually talk to and hug them. Plus, they came to hear my presentation.

Oh, there is more! I also got to meet the CEO and founder of the GRYT Health app, David, who also came to my presentation. I thought I had fully embarrassed myself enough in front of Mallory (in pic below) and Aerial because I was totally fangirl-ing. Nope! I completely lost it meeting David (in pic below), too! He’s also a MAJOR deal in the cancer world, and the nicest guy. I was able to hear David speak about his app and the thought, research, and funding behind it. The love he has for his team is inspiring and beautiful.

I’m super jazzed about the GRYT Health app and wanted to share my knowledge about it with you.  This is a peer-to-peer support app.  You can chat with people privately and in group chats. What I really love about this app is the connections made, especially in the group chats. You see, this app truly engages you with different types of programs offered for cancer survivors. I love how the group chats are moderated, too. The very first one I took part in was with Dr. Michael Stubblefield, Medical Director for Cancer Rehabilitation; National Medical Director for Cancer Rehabilitation
Kessler Institute for Rehabilitation. I was able to get direct access to him and ask questions about my neuropathy. I don’t know of any other cancer app that gives survivors this kind of access to major influencers in the cancer world. They also offer a movie club and writing program, just to name a few. Definitely download it and turn on your notifications to get updates.

It will be difficult to go back to my corporate job in the morning. I felt I was making a real difference and really living my passion the past few days. I long for the day when I can turn this passion in my spare time into a fulltime reality.

Until next time,

Warrior Megsie

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Power of PTSD: Part II

As I live through my third World Cancer Day, I don’t feel super excitement or jumping around like a cheerleader shouting, “I’m still alive!” Instead, I continue to feel like a shell of who I once was physically, mentally, emotionally and financially. I’m doing well in the spiritual department, which is a refreshing surprise.

I’m constantly being told that one day I will adjust to this “new normal.” My three-year cancerversary is in March and I don’t feel any closer to this acceptance I’m supposed to feel.  Will the grief over my body betraying me ever go away?

I’m struck by PTSD every single time I look in the mirror. It’s bad enough dealing with chronic pain (nerves and joints), insomnia, nightmares and anxiety on a daily basis. Each time I look in the mirror or take a selfie, I’m still surprised by my reflection – the hair, the weight, the skin.

Fellow warriors keep telling me that my hair will go back to how it was pre-cancer. Well, I’m going on three years’ post-chemo and these curly coils seem to be permanent. I know the curls look cute and maybe even make me look younger, but I can’t stop missing my “real” hair. I miss doing French braids, French twists, ballerina buns, pigtails, etc. There aren’t a lot of options with this short hair. It’s growing out and down instead of just down.

Then I look at my skin. It’s so ultrasensitive now. The only fragrance my skin can handle is coconut. I have never liked the smell of coconut.

I had dermatitis flare up on my eyelids, which caused an emergency trip to the dermatologist three weeks ago. This has been happening for the past 15 months or so. My eyelids are so dark from past scratching and irritation. I thought having those horrible dark circles under my eyes was bad enough.

Well, I was freaked out by how suddenly this latest flare-up that happened and the pain. So, instead of seeing the PA, I wanted to see one of the dermatologists to get another opinion. Well, this doctor upset me so badly that I nearly went postal on him. He kept saying stress could be causing this. I kept telling him no and that it must be something I’m using or coming into contact with. Every single time I said that he kept saying it could be stress. My blood pressure was getting to a boiling point.

Once again, a doctor was not hearing me. By the time I left the doctor’s office, I was beyond livid. He said my cancer didn’t cause any of these flare-ups. Um…WTF?! My cancer treatments have directly caused my skin to completely change and become super sensitive. I used to get acid peels back in the day for gosh sakes! Now, I can’t even use perfumed soap!

After talking myself down from almost going postal, I called the dermatologist’s office to file a complaint the next day. Instead of being impulsive, I have learned to sleep on it. If I’m still feeling salty the next day, then I will take action, no matter what.

The woman I spoke with was well-trained because she handled me with such compassion and professionalism that I wanted to reach through the phone and hug her. She didn’t once say, “No one has ever complained about that doctor” or “He didn’t mean to act that way.” She completely validated my feelings and said, “I hear you and so sorry you didn’t feel heard.” She then made sure to note that I don’t ever want to be seen by that doctor again or even walk by him if I have an appointment with someone else because just the thought of running into him would cause undue stress.

I did some detective work with my products to find the one constant item I’ve been using for the past 15 months. I found the culprit – makeup remover wipes. I now use baby wipes. Heck, if it’s gentle enough to use on a baby’s skin, then it should be gentle enough for my eyelids. So far, I am seeing good results.

The fast heartbeat, nausea, angst, and jittery feelings seem to be the norm anytime I go to a doctor appointment, see my reflection or notice yet another side effect popping up. I didn’t ask for any of this. PTSD, as it relates to the cancer experience, is real and not to be ignored.

Until next time,

Warrior Megsie

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Breast Cancer, Young Adult Cancer, Pain, Passion

Power of PTSD: Part I

From the moment I see the familiar buildings of where I had my treatments, consultations, and follow-ups, I immediately get hot, shaky with nerves and want to burst into tears. Then I park. I haven’t even opened my car door and already filled with so much emotion.

I haven’t written in spell because I’ve had many doctor appointments and needed to absorb all the information being thrown at me. I have a new oncologist, had a horrible experience with a new dermatologist and recently met with my amazing plastic surgeon in the past three weeks.

I’m now on my 4th and hopefully final oncologist. I decided to go back to Piedmont Cancer Institute and left Emory Winship Cancer Institute. I also went back to having a male oncologist rather than female, especially after the horrible experience with the female oncologist at Emory.

I refused to accept what the Emory oncologist was telling me. She said since I’m allergic to Tamoxifen, Evista, Lupron injections and Arimidex, there was nothing else she could do. I’ve felt so angry, scared and just horrified that an oncologist would say that and then ask, “So why are you here if you don’t have cancer anymore?”

It was that moment where I realized there is no real guide for post-treatment. At which moment do you stop seeing an oncologist and get handed off to your primary doctor? I had to take time to think about this and gather more inner strength to start the advocating process all over again.

Thanks to some recommendations from my cancer support groups, I decided to go back to Piedmont and meet with a new oncologist. I met him on January 22nd. I had four fellow warriors recommend him. They were right! He IS fantastic! He came in prepared. He has a sense of humor. He didn’t talk down to me. He was compassionate but also real with me. He said I ABSOLUTELY need to be monitored by an oncologist for 10-15 years. He was horrified by what that Emory oncologist told me. He said he had TWO options for me to consider, and that it wasn’t too late to start another post-treatment medication.

I immediately started crying because I felt HEARD!!!! I’m almost at my three-year mark of being NED (will be on 3/28). We talked at length about a plan of action, especially because my cancer was 100% ER/PR +. Even with the hysterectomy and oophorectomy, I still need hormone therapy. His facial expression when I said I haven’t been on any post-treatment medication since June 2017 was one of fear and amazement that I haven’t had a recurrence.

So, I am going on my third week of Aromasin. It’s been strange starting this medication while also being on an intense regime of prednisone for a dermatological issue. I just started feeling some side effects from it on Sunday. If you’ve read past posts, you will know I had horrible reactions to other medications, so I’m a wreck about trying this new one. I’m already feeling the stiff joints in my arms and fingers. I’m thirsty, but I think that’s in part of the prednisone, too. My sleep is completely off.

Yet, I still feel hopeful. Why? Well, my body has had time to heal from the many, many surgeries. I think it’s ready to handle a new treatment. Plus, since I now have Fibromyalgia, the pain from the Aromasin won’t be as challenging to handle since I’m in chronic pain every day.

I shall end here for the moment because I must get ready for work. That will have to be an entirely separate post. lol I will come back and write about what happened with the dermatologist and detail my appointment with my plastic surgeon that I had yesterday.

So stay tuned for more updates this week…I shall call it Part II.

Life On The Cancer Train continues…

Until next time,

Warrior Megsie

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Breast Cancer, Young Adult Cancer, Pain, Passion, Life Post Cancer

Morning clumps

The morning started out so well. I was up early, doing some writing and had my outfit for mass ironed. As I began my morning ritual of washing my face, taking a shower and washing my hair, I had to first brush out my hair. These tight curly coils drive me nuts!

After my lovely brushed out Afro, I get in the shower to wash and deep condition it. I had closed my eyes for a moment and when I opened them, I uttered a silent scream. I looked down at my hands and the tub and saw clumps of curls had fallen out. It wasn’t just little hairs. It was CLUMPS. It was so much that I got nauseous and had a panic attack. I just knew that when I got out of the shower that I would be bald.

Damn that PTSD that doctors never believe I possess.

The last time that much hair had fallen out was on 10/25/15, when ALL of my hair fell out in the shower. I can’t ever forget that horrific and beyond traumatic moment. Even though I had shaved my head, it was still so many tiny hairs that all fell out. I had walked into the shower with hair and came out as bald as a newborn.

I panicked thinking the same thing would happen this morning. I kept my eyes closed as I wrapped a towel around my head. I took a deep breath as I removed the towel. I still have a headful of hair and still curly.

I thought the shaking and flashbacks would stop by now. Here it is evening time and the memory is still as clear and fresh as it was this morning and almost four years ago.

So why did so much fall out this morning? Where did these clumps come from?

Is this related to the medically induced menopause?

Is it related to the higher dose of Cymbalta?

Is the constant financial stress of increasing medical bills and cost of living?

Is it from all the physical pain of this nerve in my left back and buttocks?

Is it the constant physical full body pain from the Fibromyalgia?

Is it from the sleep deprivation last week as I tried to wean myself off the Ativan with zero success?

Is it the stress of knowing I need one more surgery to remove the fat necrosis in my left lumpectomy area?

Is it the grief of being infertile and single?

Is it the grief of the soon-to-be anniversary of my nana’s passing?

Is it the grief of being in a constant state of fatigue that I can’t pursue my true passions more intensely?

I guess you could say I have a lot on my plate. Then again, everything in my world is always compounded with so much all at once. I wish I could have even just a week where everything was going right. Massages used to be my thing. What do I do now that I can’t stand being touched?

All of these thoughts lead back to breast cancer. My life on the cancer train continues to move off track and so painful. I hope a smooth path is in the horizon because this constant state of stress, pain, grief, fatigue and anger is wearing me out.

Until next time,

Warrior Megsie

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2018 Reflections: Positive spin on what was accomplished

I daresay 2018 brought a lot of pain, loss, frustration, negativity, hopelessness, loneliness and so much more. If I focused solely on that as I reflect about last year, I would just curl into a ball and shrivel away. So, instead of focusing on disappointments and what I didn’t accomplish, I decided to reflect on what I actually DID accomplish in 2018. This idea stems from the free class I took with Lacuna Loft called It’s a Wonderful Life: Taking Care During The Holidays!

My writing: I truly AM a writer

My blog turned a year old. I am so proud of what I have written.  When I reviewed the stats, I could not believe how many people not only read my blog, but also follow it. I am floored by how many countries I have reached!

This is truly a proud moment for me. My blog was planted in pain but grew in love, advocacy and compassion. The comments I received last year whether directly on my blog page or through social media and private messages has let me know that not only have I continued to build my voice, I have helped others discover their own.

Published on the following websites and publications:

  • Lacuna Loft
  • IHadCancer.com
  • CancerBro.com
  • WILDFIRE Magazine
  • Rethink Breast Cancer
  • LoveHope.co
  • Humor Beats Cancer
  • Chronic Love Club

My top connection: Francesca from Elon University

A surprise connection was made through Stupid Cancer on Facebook with the pre-med student Francesca. She reached out to me about a study she was doing on young adults and the fertility conversations with oncology providers.

The timing was perfect because I was in full out grief over not being able to have children due to my cancer treatments. I had been processing the lack of compassion by my oncology team during active treatment, and then how compassionate my oncology team (2nd opinion) was during my post-treatment.  

I underestimated the mental and emotional toll having a hysterectomy/oophorectomy while single would have on me. Then, enter the fabulous Francesca from Elon University with her study. Many of you will remember me posting it in the cancer support groups I belong to because I felt it was so important that our voices be heard.

I never dreamed what would come next…

Francesca asked if I wanted to be co-author of two abstracts that were to be submitted to two major medical conferences. There was no hesitation in saying, “YES!” I helped with editing and formatting the questions in a way that would speak to the young adult cancer community.  

American Psychosocial Oncology Society

Our abstract titled, “You don’t really have a say in anything…like you don’t have any options”: AYA Cancer Survivors’ Perspectives on Fertility Preservation Conversations with Healthcare Providers” was accepted, and we will give a podium presentation at the 16th Annual APOS Conference in Atlanta, GA on February 28 – March 2, 2019.

AND

Society for Adolescent Health and Medicine

Our abstract titled, “The struggles of fertility are more difficult than the struggles of cancer”: Adolescent and Young Adult Cancer Survivors’ Perspectives on Fertility Preservation  was accepted for a Poster Symposia II: Sexual and Reproductive Health oral presentation at the 2019 Annual Meeting of the Society for Adolescent Health and Medicine Washington, DC on March 7, 2019.

Plus, SAHM will publish our abstract in the supplement to the February 2019 issue of the Journal of Adolescent Health.

Francesca and I will finally meet in-person next month after talking on the phone, emailing and texting. She is an amazing and ambitious young woman with so much compassion and determination. Super excited!!!

My job: I’m working!

It has been a rocky road on the career front. Instead of focusing on the stress, I am going to reflect on the fact my brain is professionally razor sharp again. When I had to take part of 2017 and early part of 2018 off to just heal, it was a blow to my ego and finances.

Chemo brain is no joke.

Fatigue is no joke.

I made the tough decision to completely leave the TV and radio industry because my stress level in this “new un-normal” couldn’t handle that kind of fast pace anymore. I took a lot of temp jobs in different industries to see where my skills and new mindset could fit.

In the end, I am a marketing project manager in the staffing industry. There have been a lot of ups and downs at this job, but for the first time ever, I spoke up about the managerial issues. I never would’ve had courage to do that pre-cancer. Of course, I was professional about it, but also did not let up until real change was made.

I ended 2018 by receiving a Spirit Award nomination. People in the company (80+ markets) nominate those who embody spirit, confidence and enthusiasm. I couldn’t believe my eyes when I received the nomination in the mail during the holidays. I haven’t even been there a year, so it’s nice to know I’m making an impact.

My joy: My cup runneth over

Though I’m often raw and dark in my posts, I’m super bubbly and a tad “extra” in-person.  I love wearing fun hair accessories. I’m dramatic. I love to laugh. I love my cat Nathan (Natey) Edgar Chase.

I rekindled old friendships and sparked new ones.

I was able to visit my college after 19 years in October. I have ah-mazing memories from my four years at The College of Saint Rose in Albany, NY. Yep, a GA girl went to college in one of the coldest places on earth. LOL It was like no time had passed. I saw and reconnected with old friends, old haunts and my favorite professor, too!

Most of all, I have found love and acceptance with my tribe of friends, near and far.  

All of this to say, there were beautiful moments in 2018. I’m still alive and pushing through the pain of this “new un-normal.” I have a feeling 2019 is gearing up to be pretty darn special and exciting.

Thanks so much for continuing to ride this cancer train with me. Cheers to 2019!

Until next time,

Warrior Megsie

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Ode to Grief and Stage IV

I confess the holidays and life, in general, seem more difficult this year. I’ve been pondering why. That’s when I realized my grief is deeper.

As the countdown for 2019 begins, I think of the loss of fellow warriors this year. This was the first year where some I’d met online and in-person from various support groups passed away from metastatic cancer. I had felt such a connection with these women. I had watched the progression of their metastatic cancer.

There was one survivor in particular whose death continues to hit me hard. Her name was Christy.

She was feisty.

She was graceful.

She was gentle.

She never lost her sense of humor.

She never lost her essence.

She never lost her compassion.

More importantly, as the end was near, she gently passed away on her own terms surrounded by her loved ones. I have never had a bird’s eye view of the progression from life to death in such a dignified way.

What struck me the most is I’m not immune to this happening to me. Metastatic cancer can happen to anyone. 

It’s brutal.

It’s painful.

It’s death.

While I have loving friends both near and far, I still have a difficult time relating to anyone outside of the cancer world. I can’t just“get over it” because more long-term side-effects keep presenting themselves in painful ways.  I’m crushed that my life post-cancer doesn’t feel like much physical healing has occurred.

Then I look outside of my physical and emotional pain and see the beauty and amazement of new opportunities that have come my way that never would’ve happened if I had not gone through cancer. Finding my writing voice again has been the greatest and most unexpected gift.

I had stopped writing for six years before I got cancer. My voice was gone. Then getting breast cancer, though utterly traumatic, has given me purpose and a voice again. I have such a passion to remain an advocate through writing and speaking.

As the New Year approaches, I do feel more hopeful than I did last year. I don’t know how much time I have left on this earth, as none of us do. After my friend Christy’s death, I am determined to seek more joy and continue to give be a voice for those who haven’t found theirs yet or don’t know how to express it.

I still have days of utter sadness, grief, anger, and frustration. Yet, I also have days of beauty, joy, laughter, love, acceptance, and new opportunities. I hope to find that delicate balance one day.

This quote continues to bring comfort as I enter 2019…

“To live is the rarest thing in the world. Most people exist, that is all.”― Oscar Wilde

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Life Post Cancer

One year BLOGversary

My blog actually turned a year old on the 1st. I’ve taken time to reread every single post I’ve written. What I have discovered is the rawness, anger, and heaviness continues to weigh on me. On the flip side, I’ve felt more love, creativity, passion, excitement, and acceptance than I ever thought possible.  

Going through cancer, while utterly traumatic and painful, has given me a voice I never knew existed. Where does my resilience come from? I’ve been knocked down by so many events in my life, yet I keep standing back up. Sometimes I stumble and other times it takes longer to get back up, but I always do.

Since my last post, I’ve been diagnosed with Fibromyalgia and osteoarthritis. Am I 42 or 142? At least now I know why my body pain has been so debilitating. I can finally move without crying. I can breathe without wincing.

I haven’t fully processed either diagnosis or what that means for my future and quality of life. It’s a little too much for me to handle at this time.

More than anything, I’m filled with gratitude for the support from ALL of the warriors and friends who read my blog and continue to follow my rocky cancer path thus far. It means the world to know my voice matters and is being heard.

I thank those who don’t try and diagnose me, too. Though my written thoughts can be dark at times, you only get to see one side of me. I still exude a lot of humor and positive light. I have to recharge my batteries more frequently than I used to, but that’s okay.

This quote sums it up best…

“To live is the rarest thing in the world. Most people exist, that is all.”― Oscar Wilde

Until next time,

Warrior Megsie

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