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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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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

 

 

 

 

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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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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

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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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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

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