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 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.
As October approaches, I grow angrier and angrier. Why? Because it’s now become PINKtober. We’ll be flooded with commercials and friends doing walks, wearing tutus, toothy smiles and cheers nationwide. Breast cancer is glamourized to look pretty, easy and fun. No wonder other cancers hate us.
The media attention breast cancer gets is HUGE. The funding for it is HUGE. The awareness part is bullshit. Yep, I said BULLSHIT! A lot of that money raised from the tons of “walks for the cure” is nowhere to be seen. The bulk of these organization – yes, Susan G. Komen; I’m pointing at you – are funneling millions of dollars…into their pockets!
The wool that was once over my eyes is gone. Why? Because I’ve lost countless friends from metastatic breast cancer. I’m acutely aware that I could still get metastatic cancer. I’m not “cured.” I will be getting scans every six months for 10 years!
I had Stage IIA Invasive Lobular in the left breast. Let me give you some information on this type because it is not common.
Here’s an overview from the Mayo Clinic’s website:
Invasive lobular carcinoma is a type of breast cancer that begins in the milk-producing glands (lobules) of the breast.
Invasive cancer means the cancer cells have broken out of the lobule where they began and have the potential to spread to the lymph nodes and other areas of the body.
Invasive lobular carcinoma makes up a small portion of all breast cancers. The most common type of breast cancer begins in the breast ducts (invasive ductal carcinoma).
I’ve realized many women and men are under the assumption that if you have a mastectomy, that you’ll never get a recurrence or metastatic cancer. I’m going to take this time to educate and give some definitions for those who may not be aware or too scared to ask.
Here are the Types of Recurrent Cancer and definition of Metastatic Cancer from the National Cancer Institute at the National Institute of Health’s website.
- Local recurrence means that the cancer is in the same place as the original cancer or very close to it.
- Regional recurrence means that the tumor has grown into lymph nodes or tissues near the original cancer.
- Distant recurrence means the cancer has spread to organs or tissues far from the original cancer. When cancer spreads to a distant place in the body, it is called metastasis or metastatic cancer. When cancer spreads, it is still the same type of cancer. For example, if you had colon cancer, it may come back in your liver. But, the cancer is still called colon cancer.
- Metastatic Cancer means the spread of cancer cells from the place where they first formed to another part of the body. In metastasis, cancer cells break away from the original (primary) tumor, travel through the blood or lymph system, and form a new tumor in other organs or tissues of the body. The new, metastatic tumor is the same type of cancer as the primary tumor. For example, if breast cancer spreads to the lung, the cancer cells in the lung are breast cancer cells, not lung cancer cells.
Despite how the media glamourizes breast cancer, I still love wearing pink, tutus, tiaras, butterfly wings and feather boas. Why? These items were ALL in my closet before my breast cancer diagnosis. I’ve always been a tad extra and a Nut-Meg. When I look at those items in my closet, I don’t associate breast cancer with them except for two of the six tiaras I have. I bought one a year after I was declared NED (no evidence of disease) and the other this year for my birthday because I wanted one even bigger and heavier to celebrate that I’m still above ground.
Breast cancer has taken away so much. It’s a daily struggle to reclaim pieces of myself. My body will never, ever be the same. I’m still healing from my 8th breast cancer related surgery I had in June of this year.
I remember how financially giving so many were when I was initially diagnosed. I can’t tell you what an enormous help their generosity was for me, especially as a single woman, but the medical bills don’t stop once the cancer has been removed.
I didn’t think I would get diagnosed with cancer at 39 years old; two months after my birthday.
I didn’t realize how expensive getting scans (diagnostic mammogram with either an ultrasound or MRI) every six months would be thanks to super high deductibles.
I didn’t expect to have additional surgeries afterward.
I didn’t expect that I would be intolerant of every type of post-cancer medication to help prevent recurrence.
I didn’t expect to have permanent chemo induced peripheral neuropathy in my hands and feet to the point I have a permanent handicap sign because I can’t walk far anymore.
I didn’t expect that all these surgeries would trigger fibromyalgia and have to live with severe chronic pain every blasted day.
I didn’t expect I would still be single and can’t even think about dating or being intimate because I was medically induced into menopause at 40 years old.
I didn’t expect to long for children until the choice was taken away from me and had to get a hysterectomy and salpingo oophorectomy at 40 years old.
I didn’t expect to have these continuous cognitive issues (chemo brain).
Most of all, I didn’t expect to meet so many beautiful fellow warriors who have since DIED in the past three years.
For me, PINKtober isn’t reality. It’s made to be cute, fun and money grabbing.
The reality is we need to know the cause of why so many early stager’s eventually get metastatic cancer. Why are so many women and men being diagnosed under 40? Why are so many with zero family history of cancer getting breast cancer? And, why aren’t there better treatment options for during active and post treatment?
That’s what needs a continuous spotlight and research.