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

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

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