When Trust is Gone

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.

What the hair?!

I’ve been on cloud nine since my mother gifted me an early birthday present (b-day is July 3rd) of getting my hair blown straight 2x per month for a year. I’ve hated and still don’t understand the chemo curls. Then it hit me as I stared at my reflection this morning after washing my hair and seeing the curls form again. I no longer understand my hair curly OR straight! WTF?!

I know the chemo curls look darling and such. To me, it’s a constant reminder of how unnatural they are and what they represent – the 4 AC and 12 Taxol that nearly killed me. I suffered extremely painful side effects during that hellish five months. Fellow warriors kept telling me the chemo curls were temporary because they had them and then went away. I’m three years post-cancer. Why are they still here? Are mine truly permanent?

I used to have super thick straight hair pre-cancer. It was almost to my shoulders. I could do so much with it – French braid, French twist, ballerina bun, pigtails, ponytails and the list goes on and on.

During that first week of my hair blown straight and seeing the length, I could not stop beaming! I had stopped flinching when I saw my reflection. I recognized this straight hair. I couldn’t believe those tight curls were this long straight.

It is this second week when I realized this straight hair is completely different, too. It’s so much thinner than before. I’m rusty at using my flat iron and products to keep it smooth. The sides are still short. How do I style it, so I don’t look old?

I purposely haven’t worn a fascinator in my hair for two weeks, which has been my trademark with the curly hair. I’ve just worn some snazzy headbands, barrettes and combs. I wanted to see how different I looked without them.

I wanted to feel like ME again.

I wanted to look like ME again.

I can’t even believe I’m saying this but…I STILL don’t recognize ME. I thought wearing my hair straight again would feel natural and complete. My hands can barely hold the flat iron because of the neuropathy. I couldn’t even remember how to braid a few strands. This straight hair is different too.

I will never understand those warriors who say hair doesn’t matter. They completely invalidate the emotional toll losing hair creates and when it grows back entirely different from what we once knew. It DOES matter.

As I washed my hair this morning, it was strange to feel the curls take hold as the water flowed through it. I went in with straight hair and came out with those chemo curls. When I looked in the mirror this time, I still saw a stranger.

Now I fully see that I will NEVER physically look how I did pre-cancer. I’m not the same externally. My weight is up again. My face is fuller. My thick eyebrows are gone and must be drawn. I deal with chronic dermatitis on my eyelids. The corners of my mouth are often dry and cracked. I still have dark circles under my eyes. My lashes aren’t as long as they once were.

That’s a harsh dose of reality I wasn’t prepared to swallow this morning.

Me pre-cancer
Curly vs Straight post-cancer

Until next time,

Warrior Megsie