Uncategorized

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

Advertisements
Standard
Uncategorized

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

Standard
Uncategorized

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

Standard
Life Post Cancer, Uncategorized

Reality Bites

I’ve thought a lot about “my story,” and who will tell it. It’s a tough pill to swallow knowing my family history literally ends with me.

Reality Bites.

It’s overwhelming to think about. Friends tell me I can still be a mother by either adopting or marrying someone with children. There are many issues with these two scenarios, so I’ve highlighted the top three:

  • I’m single and not about to adopt a child when I can barely provide for myself and mounting health needs/issues.
  • The thought of dating is off the table for at least another year or so due to chronic pain, fatigue, and zero sex drive.
  • I don’t even know if I will still be alive in another year or what other illnesses will befall me as long-term side effects keep popping up.

The point is I will NEVER have a human legacy who inherits my long lashes, quirky personality or bubbly laugh.

Reality Bites.

I was looking at old family pictures this morning. Though my mother and I physically do not look-alike, I found two pictures of when we were little, and we have identical facial expressions and seated position. It makes me laugh, yet weep.

Reality Bites.

Life can be very hard; for some more than others.  I’ve often questioned why I have to carry so much weight on my heart and soul. I don’t want to be Hercules or Wonder Woman.

I don’t know where my resilience stems from. There have been more dark moments that I care to fully acknowledge in my life thus far, and also many beautiful, delightful and charming moments.

Reality Bites.

This is not about being clinically depressed. This is about the ups and downs of grief. This is about MY reality. I’m still grieving over what could have been, what my reality is and how difficult thinking of the future and making plans can be at times.

Reality Bites.

There are moments when I think, “What’s the point?” of telling my story. Who really cares?

  • Chronically single
  • Medically barren
  • Breast cancer survivor
  • Only child

A therapist told me to keep posting pictures on social media from my scrapbooks and photo albums that I have so lovingly put together over the years that fully capture the really magical, humorous and exciting moments since childhood.  I was doing just that to make my digital legacy mean something but stopped as life post-cancer became too much again.

Reality Bites.

The only constant in my life is the essence of me remains the same. It’s solid. It’s my core.

  • Cancer couldn’t kill it.
  • Depression can’t kill it.
  • Grief can’t kill it.
  • Pain and fatigue can’t kill it.

There always seems to be a storm brewing, edging its way to the forefront of my mind.  I could really use a season of calmness in my body, heart, and mind.

Reality truly does bite.

Until next time,

Warrior Megsie

 

 

 

 

Standard
Uncategorized

I’m still here…

I know it has been a hot minute since I’ve posted. October is turning out to be both an amazing yet frustrating month. I just wanted to send a quick note to say I am still here with a lot to say but just physically dragging and in excrutiating pain.

In the weeks leading up to my scans, I could barely sleep and was emotionally eating. My job situation continues to be a huge source of my stress as well. I have been irritable and super on edge.

The good news is my scans came back NED (no evidence of disease) last Monday, 10/8/18. Whew! Now I can breathe for another six months until my next appointment which will include an MRI. The stress of being so late to get my follow-up scans thanks to lack of insurance, a job, then getting a job but limited insurance, to finally being eligible for the “good” insurance really weighed on me.

I have much news to share and miss writing. Know you will be hearing from me later this week, possibly a new post even tonight.

I appreciate all of the continuous love and support from each of you. I’m still here…

Love,

Warrior Megsie

Standard
Uncategorized

Cancer Worlds Collide

I never thought I would be featured in a mother/daughter cancer battling role in my life. It’s strange that I went through breast cancer and my mother has been battling her 2nd cancer for years. Understanding what her oncologist says is almost as scary as not understanding. Knowing all we’ve been through scares me. Mother hasn’t been this weak since her back surgery last year. I truly despise cancer and what it has done to us physically and to our relationship.

My mother battled her first cancer, ovarian, when she was pregnant with me. She had an amazing oncologist who tried an experimental treatment, which is why she is still alive. Fast forward to 1997, my sophomore year of college at The College of Saint Rose in Albany, NY. That’s when I found out my mother had a second cancer. This time it is a blood cancer . Essential thrombocythemia (ET) is a rare, chronic blood cancer in which a person’s bone marrow makes too many blood platelets (also known as thrombocytes).

She tried to protect me by hiding it, but I knew something was wrong. I felt like my world had come crashing down. I’m an only child of divorced parents who don’t speak to each other. I immediately felt very “heavy” in a sense because she’s all I have, my rock. At that time mother continued being protective of me and was determined that I live my life. I graduated from college and moved to Los Angeles, CA. I was determined to spread my wings far and wide and mother was and has always been completely supportive.

When I came home for Thanksgiving in 2002, I knew I would move back to Georgia to be closer to her. She never asked me to give up my life in LA. My mother is biracial and was even paler than usual that particular day. Since I am an empath and sensitive soul, I made the decision to move back to GA in February 2003. Let’s be clear, I did not move in with her, I moved just a few hours away from her.

It’s hard being a caregiver to someone who never wants to ask for help. My mother is a strong and brilliant woman. I respect that wholeheartedly. Those qualities also made it difficult to really be there emotionally for her. She didn’t want it.

Before she medically retired, she went to Kabul, Afghanistan for a year in 2013 as a gender human rights advisor for the vulnerable population (women and children). I was a wreck. Now I know exactly what military families go through when a loved one is in a war zone. Add cancer to the mix, and I was even more anxious and afraid. Mother’s oncologist in Georgia found an oncologist in Germany who could refill her oral chemo and take her scans every three months.

I admire that mother didn’t let her cancer treatments stop her from living her dream, but it was deeply frustrating and scary to not be part of that decision.

Fast forward to September 2015; I was officially diagnosed with stage IIA invasive lobular breast cancer at 39 years old. In my mind, I could no longer be the caregiver because I was now a cancer patient about to face some truly grueling treatments and battling for my life.

I thought my mother would be able to relate and help me. That wasn’t the case. I drove us to all my chemo treatments and doctor appointments. I did. I continue to carry a lot of anger about that time, which she knows. I remember the first time I walked into the infusion center; mother and daughter cancer patients. I expected support. I expected my mother to show up and bring me comfort. Instead, we would often fight and get to the point where my infusion nurse would ask mother to sit in the waiting room for a bit because my stress level was rising to a dangerous level for me.

When I asked her why she refused to learn how to get to and from the cancer institute for my treatments, she said she needed me to tell her each time because she wasn’t good with directions. What I couldn’t comprehend is she understands the utter fatigue from chemo, even though hers is oral, so I didn’t the energy to tell her every single time how to get to and from the cancer center.

Fast forward to February 2017, I had to get a bilateral salpingo oophorectomy and hysterectomy because my medical team felt I should be medically induced into menopause because the post treatments for pre-menopause weren’t working in my system. At that same time, my mother hurt her back.

Six months later, she had major back surgery. It was a very tedious and tricky surgery because she is allergic to every single known pain medication. The pain she was in was excruciating after the surgery. They had to take her off the oral chemo for three months because her system couldn’t handle that kind of pain on top of the chemo side effects.

I was not even close to being fully healed from my own major surgery or even from my whole breast cancer battle. I was driving almost every day to her, bringing in her mail, emptying her garbage, developing a schedule for her friends from church to bring meals and communion to her.

I had no help for my own physical healing. I wasn’t supposed to lift anything for three weeks. I needed rest and time. I needed my mother.

My mother is 70 years old now and still a brilliant and difficult personality. I make her show me her lab results because I understand everything because of my own cancer experience.

Caregiving for my mother is physically and emotionally draining, especially as I still need not just my mother, but my own caregiver. I love her unconditionally. I wouldn’t wish this on anyone.

Our cancer worlds continue to collide.

Until next time,

Warrior Megsie

Standard
Uncategorized

Her name is grief and PTSD

I’ve been quite distant and MIA the past few weeks, especially in regards to writing. I have been so angry by how a situation was handled at work by the higher ups, that I didn’t even realize that as I stewed and fumed with anger, that it was actually my way of grieving and PTSD rearing her ugly head.

Damn you.

It has officially been a year since I “resigned” from what I thought was the dream job and dream money. I thought I had healed and moved past all the events leading up to that moment, but now clearly see I am still flooded with grief and PTSD. The whole situation was completely out of my control.

Damn you.

Cancer stole my so-called professional career and financial security.

Damn you.

I’ve repressed much of what has happened in my life since entering the post cancer club, especially after the hysterectomy/oophorectomy. My body wasn’t ready for that kind of major surgery only eight months after my final breast cancer treatment/surgeries.  My body had already been through so much physically. Then add all the experimenting with Tamoxifen, Evista and Lupron injections in the hopes one would work without having to undergo another life changing surgery. It all equates to a perfect storm of overwhelming and painful grief and the distress of PTSD.

Damn you.

I can’t seem to grasp that I truly am IN medically induced menopause. I also can’t seem to grasp how that tiny pill Arimidex could cause so much harm that I could barely function during the bulk of 2017. I couldn’t comprehend any information. It caused horrific bone pain, like chemo. I had developed large black bruises on my left leg (cancer side). My face started breaking out like a 14 year old thanks to the drastic drop in estrogen. My skin became so dry. I developed these deep lines that look like layered necklaces around my neck.

Damn you.

How does one handle the complete physical loss of self? Will I ever stop grieving for ME? Will I ever stop wanting my pre-cancer straight hair? Will I ever stop wanting to feel like I had more time and choices with my treatments? My cancer treatments literally caused me to lose my mind, my strength, my body parts, my confidence, my job and my financial cushion. I had NO control over any of it.

Damn you.

Yes, I have found my writing voice again.

Yes, I’m involved in the young adult cancer community locally and nationally.

Yes, I’ve found an awesome church home, lectoring and singing in the choir after years away.

Yes, I have made fantastic new friendships and rekindled old friendships.

Yes, I’m still alive…

It’s fabulous and amazing, but it came at such a huge cost. I’m incapable of “pretending” to tolerate bullshit and ignorance, especially in the workplace. My anxiety and stress has reached a new level of intensity.

Cancer took away many choices professionally and so much time that I will never get back.

The amount of inner strength it takes to push through the fatigue, the grief, the PTSD, the anxiety, the depression and the daily pain to work full time just for the insurance and ultimately “survive” weighs heavily on me.

The fear of recurrence and what all these emotions and stressful environmental situations are doing to my body makes me feel like I am being tossed around in a rabbit hole.

Damn you, grief and PTSD.

Damn you, breast cancer.

Damn you.

 

Until next time,

Warrior Megsie

Standard