This is just a quick post for those who may not have social media accounts. I was honored to be interviewed on my friend’s vlog called the Brain Cancer Diaries on YouTube a few weeks ago for breast cancer awareness. If you’ve ever wondered what I sound like and wanted to hear more of my story first-hand, then click on the link below and check it out!
Was there ever a time when one could just be the patient and trust the doctor would take time to review their chart and make customized recommendations of treatment?
I was born three months premature, so I was a sick baby and little girl. I was always going to the doctor for tests, infections and surgeries. I have fond memories of my pediatrician Dr. Tift. He always wore a bowtie and had the best bedside manner. I trusted him.
Once I graduated from college and had to find my own doctors, I was still that trusting little girl at heart. I really had excellent doctors in LA and GA during my 20’s and early 30’s. I felt like a person. I had so many issues with my ovaries, uterus, cervix and painful periods. They knew I was at risk for those cancers. I had more vaginal ultrasound action than sexual partners!
All my gynecologists over the years truly made me feel like they were doing the heavy work and monitoring my health. I trusted them.
Fast forward to the three years before my breast cancer diagnosis. All that comfort and trust was diminished.
I remember being told by countless doctors – primary, endocrinologist and dermatologist – that I was overreacting and needed to reduce my stress level and exercise. I was so angry and wondered why they made me feel like it was my fault for gaining weight, hair changing texture and falling out and irritability. I’d never been an overweight person in my life until six months after my 34th birthday. The dermatologist said there nothing she could do about my hair falling out or give me a reason. All she said was I should invest in Rogaine and eat better.
I was beyond devastated, yet I kept pushing for answers because I knew in my gut that something was very off in my body. It’s only when those tiny green bruises appeared on my left leg that I was finally taken seriously.
Why wasn’t my word and other symptoms enough to warrant concern from the start?
Why did it have to get to the point of feeling miserable and lethargic to be taken seriously?
“Oh, let’s get her a blood test here and there to shut her up,” is the vibe I consistently felt during that time until I physically felt the mass in my left breast that August 30, 2015.
During active treatment for my breast cancer, I felt heard and heavily monitored. I felt like I was a person again and not just a number. I was a well-cared for patient.
Then I enter post-treatment and just feel thrown out into the sea with no life jacket. I’m now swimming with millions pushing and shoving to be heard.
I thought palliative care would be different. I started out feeling heard again regarding my chronic pain from fibromyalgia and neuropathy thanks to chemo and multiple surgeries. I felt comforted knowing I was wrapped in this extra level care. I naively thought the relationship with my palliative care doctor would be different.
Instead, I’m consistently dealing with managing my own health and presenting outside the box ideas to help manage my chronic pain.
Get ready for my rant…
Why am I paying the copays when I’m presenting research to my doctor about new treatments for my case?
Why do many of my doctors look shocked when I make a suggestion?
Why aren’t any of these doctors’ part of cancer support groups to read what other patients go through?
Why does the doctor always ask why I’m there even though I’ve stated it in the portal, filled out the stupid paperwork and told the intake nurse?
Why are they so quick to dismiss my ideas or when I’m experiencing a side effect?
Why are they recommending medications within the same family when I’ve already shown the first option didn’t work or was allergic?
Why am I having to beg for x-rays and scans and other procedures?
Why aren’t doctors staying up to date on the latest research?
Why are doctors using Google on their phones to look up medications and the side effects in front of me?
More importantly, why aren’t they listening to the patient?
I no longer trust that any of my doctors truly have my best interest at heart. They are being mandated by insurance companies to push certain drugs. They aren’t taking the time to review my chart before walking into the exam room.
I didn’t set out to be my own doctor. I no longer have the mental bandwidth to stay on top of it all but I must because none of them will.
When will these doctors stop trying to cookie cut my treatment? I’m a square Meg who can’t be pushed into a round hole.
I’ve been accused in the past by other warriors/survivors for being attention-seeking when I talk about my hair. I had trusted three, who I thought were friends, so took the insulting words to heart. That’s why I permanently left one local breast cancer group and took a three-month break from a national one. I came back to that national one because it’s too fabulous of a group to allow certain people’s insulting views keep me away from the support I need.
Now, I’ve always been a tad extra. That’s my natural and dramatic personality. Even when I’m sad or depressed, it’s done with flair.
It’s why I took ballet and always wore my hair in buns, French braids and twists.
It’s why I basically lived at Macon Little Theatre and Theatre Macon in high school and minored in Theatre at The College of Saint Rose in Albany, NY.
It’s why I had special outfits during my salsa and swing dancing days.
It’s why to this day, I want to be an actress.
Losing my hair was even more traumatic than I could’ve ever imagined. Not only did I lose the hair on my head, I lost all the following as well:
That’s why I get so infuriated when people say, “it’s just hair.”
So, losing my hair and being beyond upset and devastated has been genuine. It’s why when my hair came back that chia pet curly I always reference was so difficult to process. That’s why it’s especially hurtful when those in cancerland question my feelings.
It’s never been about vanity. I know I rocked the bald look. I also rocked the chia pet curly look. That’s called style. The anger and just utter disbelief came from not physically recognizing my image in the mirror. I’ve dealt with and continue to deal with so many issues post-cancer like weight gain, more surgeries, more scars, and don’t recognize my body at all. None of it is even remotely the same. I just wanted the hair that I had known my entire life to grow back the way I remembered it – straight and super thick.
So, I made a video to show all the different looks of ME past and present (also posted earlier on social media). It’s MY hair story.
My Hair Story
I didn’t post it to reel in compliments. I posted it for myself, to see the progression of my hair pre and post cancer and see the different looks as I’ve tried to adjust to my reflection. I see the pain in my eyes masked with a smile in the ones starting in 2015 thru present.
I know I “look healthy” and all should be right with the world, but that is not my reality.
My friends continue die by the hands of the cancer beast – two died this week.
My mother’s treatments for her rare blood cancer continue to wipe her out.
My chronic pain continues to be a challenge to manage.
My career in the corporate world is stagnant.
So, don’t come at me with insults or how hair isn’t important to you. Every single person’s cancer journey is THEIRS and extremely personal. I just want to claim some part of me that hasn’t been devastated by breast cancer.
I want to see ME again.
I deserve to see ME again.
I was dealing with depression and anxiety long before cancer. Now I feel the most fragile I’ve ever felt. Just when I think I have a handle on things, everything explodes. I’ve written about this in the past. What happens when the strong need to weep? They weep alone.
I’ve struggled finding people to talk to and let my guard down, really and truly let my guard down. What tends to happen is they listen for a few minutes and then inevitably tell me the following:
You’re so strong.
You’ve got this.
This goes on for a few minutes until the shift happens where I become their therapist and shoulder their pain and their fears. They assume I’ll be just fine and can handle anything.
When others can’t handle hearing your fears or darkness because your “normal” personality is sunny and zany, that’s pressure to always appear okay. That’s my current situation. Heck, it’s been my ongoing situation.
The chronic pain makes it harder to keep my emotions in-check. I no longer have the energy to keep up the appearance of being okay. I don’t get a break from what my cancer treatments and multiple surgeries have done to me. I wake up hurting every morning and go to bed hurting every night.
I’ve been very down on myself about my weight and being chronically single. I grow even more frustrated with being told the following:
Weight isn’t everything.
Dating or relationships are overrated.
You’re your own worst critic.
Not understanding my body and loneliness just adds to my depression.
Sure, I’m resilient. I don’t know where that comes from, but I somehow always get back up after being slammed to the ground over and over and over again. I’ve wanted to give up, but my nature just won’t let me.
I don’t want to be alone.
It’s not fair.
It’s not easy.
Wading through the darkness while leaping from one friend to another, sharing spurts of what’s hurting the soul but knowing there’s no one shoulder big enough to hold all your darkness is my daily struggle.
This is what strong people do.