Life Post Cancer

Survivor’s Envy

I no longer have moments where I can ‘forget’ I had breast cancer. I’ve never bounced back after all my treatments and many surgeries.  My body continues to deteriorate instead of growing stronger. The physical pain continues to increase instead of decrease. The skin issues on my face, neck and chest continue to flare up.

This can’t be my permanent quality of life, can it?

I’m plagued by Survivor’s Guilt but also plagued by Survivor’s Envy. How is that possible?

I see others who I met during the start of my cancer path and see how well they bounced back afterward. I see those starting families, getting better jobs or continuing to kick ass at their current job, dating, getting engaged and married, working out and just looking fabulous.

Am I seeing only what they want others to see? Are they really struggling privately? Is it a show for the masses because social media never shows the whole story?

Then I get mad at myself because I know that other warriors are suffering in many ways post treatment or experiencing recurrence and metastasis, but don’t reveal it on social media.

My reality is I no longer have the strength to mask the physical and emotional pain. My quality of life plain sucks. This isn’t a pity party. I’ve tried to push through the physical pain. I get told to just exercise and will feel better. Well, all that movement is actually causing more inflammation and severe pain. My weight is going back up because the pain has become excruciating to the point of almost debilitating most days. It makes exercising and just moving incredibly hard and painful.

I just want to feel better.

I want to have energy.

I want to not feel envious of those survivors who are truly enjoying life. They’ve been through hell and back, too.

For me, my hell continues. The more intense the pain, the harder it is to manage other life stresses. It has increased my anxiety level to the point where I’m waking up nauseous each morning. My sleep is off cycle again.

I underestimated the effects of being medically induced into menopause, becoming officially barren and zero sex drive. How can I even think about dating when I feel and look like crap?

I’m having a tough time igniting my spark and passion. I’m so worn out from working and dealing with the office nonsense that I can barely write or do what I need to do to press forward.

I feel guilty for being envious of other survivors. I feel like October or PINKtober brings out the Grinch in me.

I want to celebrate my life, but is this really a life when I’m single and can’t date? When the pain is so debilitating that I cry out in agony and only my loving cat Nathan can hear me? When I’m so fatigued that I can barely do the laundry, vacuum and dust or make dinner?

For me, life post cancer has its many ups and downs. It seems these days are more down because the constant pain and fatigue is tearing down my defenses.

I fought so hard to try and not die from this. It’s not all smiles, pink tutus and walks. It’s shocking, stressful, utterly painful and exhausting to pretend I’m okay because I look healthy.

Until next time,

Warrior Megsie

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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

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Life Post Cancer

The struggle continues…

No real blog post tonight either. This pic sums up the past few weeks perfectly, which I posted on my social media Friday.

Pic for Blog for 9.30.18

I have spent this day actually sleeping and then working on a safety plan for my mental health this week.

Working on letting go of wishing I could go back into the past.

Working on embracing the silence instead of trying to fill it.

Working on not allowing other people’s stress become my own.

Working on feeling the smile and not faking it.

Sept/Oct are painful months due to so many cancerversaries and other painful memories that are being compounded with other bullshit now.

Until next time,

Warrior Megsie

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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

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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

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Can’t accept this “new normal” because getting cancer is not normal

I realized I’m in the throes of a depressive state of mind yesterday. The anger and frustration of going through cancer and the physical changes still weighs heavily on me. I thought after two years since my last chemo and radiation, I would be better. My final surgery was last year. The grief and anger is still so palpable. I notice people in and outside cancerland rarely ask if I’m doing OK because I come across as very strong, humorous and put together. In actuality, I am broken and hurting. It’s like no one gets it.

In this instance, being told to be positive (B+) trust in God and let it go is not helping. I’ve already left a voicemail for my psychiatrist. I see that as a sign of strength because my current coping skills are no longer working.

My nature is typically positive and always there for others. I post smiling pictures on social media. I may look strong, put together and fun, but inside I am fragile and wish people would see that.

My “sister”/bestie asked me point blank if I was depressed yesterday. I didn’t even realize I had fallen into a depression until she asked me that question. That’s when I realized the trigger of the depression.

It has been one year since I “resigned” from that supposed dream job where I was making insane money, had a lot of responsibility, and felt financially free for the first time ever. This time last year, I could barely remember how to get home. I couldn’t process any new information. It had been five months since the hysterectomy/bilateral salpingo oophorectomy and had been on the Arimidex. That post cancer medication nearly killed me.

The fact I’m single with no siblings and a mother who is also battling a blood cancer, makes things quite difficult. I’ve created my non-blood family but now see many don’t ask how I’m really doing or gloss over it because I “look” great. I love my friends (local and worldwide), but I still don’t feel heard.

I post a lot about my chemo induced curly hair. I notice whether I post on my personal Facebook/Instagram page or in cancer groups, I tend to the get the same responses below:

“You look cute and healthy.”

“The curls suit you.”

“Be happy you have hair.”

When I see those comments, it’s like my heart gets stabbed over and over again. I’ve been asking myself why I continue to get so upset by those comments when I know my friends are just trying to be supportive. Another warrior in a cancer group nailed it.

The bulk of people I meet now have only ever seen me as bald, growing the hair back and now the curls. They have never seen what I looked like years before the cancer entered my body. They have never seen me before my hormones got out of whack and the weight gain got out of control. They have never seen me with the straight bob that I miss so much. They have never seen all the ballerina buns, French braids, French twists, and flips and so many other ways I styled my hair.

When I meet people now, they have no idea these curls weren’t part of my life. They think this is just how I look. I still do not SEE me!!!! I still see a complete stranger. Yesterday, the curls looked nice, but I still see them as a prop to whatever clothes and makeup I’m wearing. I still don’t connect with the fact this is my hair now. So many other cancer warriors have told me the curls aren’t permanent because theirs wasn’t. Well, mine aren’t going away.

Pics for blog post - long hair_7.15.18

I don’t want to accept this “new normal” because getting cancer is not normal. Being medically induced into menopause is not normal. There is nothing normal about this situation and the way I keep feeling.

This anger, depression and grief come in waves. Will there ever be a time where all those feelings go away? Will the shock and trauma ever leave my mind? Will I ever truly feel heard?

 

Until next time,

Warrior Megsie

 

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A little wiser

I love the idea of celebrating becoming wiser instead of focusing on age. I had asked for a low-key birthday celebration this year. I needed time to just think about not only the past year, but the past three years and that loss of time.

Pic to add in blog_7.8.18

I purposely took time on my birthday, which was July 3rd, to be in complete solitude for a few hours. I put the phone away. I was in the garden at my church, which is my go-to place when I need to think and feel at peace. It was that moment when I realized how much wiser I’ve become. Cancer changed my perspective and whole attitude on life. My little corner of the universe has been filled with more joy and laughter in the past three years, way more than I originally thought.

That’s not say I no longer have moments where the grief of not being able to have a child of my own or the pain and struggle of still being single hurts. My heart can feel very heavy at times. The physical pain I still endure can become too much.  The unknown and fear of recurrence still plagues me.

Yet, I feel that if I died tomorrow, I would actually die happy. I wouldn’t have said that 5 or 10 years ago. I was in such a negative head space then. I look back on those years and just filled with sorrow because I wasn’t enjoying life. I was so focused on what I didn’t have or didn’t do, that I stopped living.

Now, I am another year older and almost three years since my original diagnosis, I feel more alive than I ever have before. I’m finally taking those risks that I was too scared to do back in the day. I’m dreaming BIG and no longer just existing.

Me with tiara_7.3.18

I don’t want to allow my fears to keep me stagnant. I feel change is coming in the next year or so.

I’m excited by all the possibilities.

I’m excited to take risks.

I’m excited that I’m finally ignoring naysayers.

I must continue to remind myself that I have the strength and motivation to continue doing what I need to do in order to feed my soul and not only dream, but truly live my many dreams.

Until next time,

Warrior Megsie

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