A New Perspective on Infertility

I think many cancer patients/survivors grieve for some part of themselves that’s been lost to this horrible disease. When you add the loss of body parts or the body that you used to know, the grief becomes greater. Then when cancer makes you infertile when you’re still of childbearing age, there’s another type of grief that is palpable.

One of the hardest paths I’ve had to travel post-cancer has been due to the choice of having a child being taken away. Since I was intolerant of the medications to help prevent recurrence for pre-menopausal women, I had to be medically induced into menopause in 2017, so I could try the medications for post-menopausal women. Plus, during my pre-cancer days, I had ongoing issues with my cervix and ovaries – multiple abnormal pap smears and cysts the size of lemons on my ovaries. I had a bicornuate uterus which means it was heart-shaped, so high risk for miscarriages and premature birth.

It’s painfully clear that I would’ve struggled to get pregnant and/or carry a baby to full term. Do I want to live, or die doesn’t seem like a fair choice.

I had stopped blogging about my feelings on infertility because I would get so hurt when people would say, “just adopt or foster.” It’s such a callous thing to say even though I know they were trying to be supportive. I constantly wanted to scream that I’m chronically single!!!

I grew up with divorced parents where my mother had sole custody of me. I saw how hard it was to raise me as single, divorced woman. It truly took an amazing village to help raise and support my mother and I and know we were blessed to have such amazing support. That’s why I would never want to raise a child on my own unless forced due to a divorce. I’ve cost my mother a fortune, even as an adult.

I would never willingly adopt or foster a vulnerable child without being able to fully support them financially and emotionally. I physically don’t have the energy to handle raising a child on my own. I can barely keep myself afloat with medical bills constantly hanging over me and chronic pain that can often turn excruciating. How would that be fair to a child? They need more than just love.

The part I struggle with the most is the longing to share my childhood and college memories, values and wisdom with a child.

Fast forward to Friday evening when I was talking with my friend Francesca. I mentioned her a lot last year because we partnered together to write an abstract that we were selected to present titled, “You don’t really have a say in anything…like you don’t have any options”: AYA Cancer Survivors’ Perspectives on Fertility Preservation Conversations with Healthcare Providers at the 16th Annual American Psychosocial Oncology Society(APOS) in Atlanta in February 2019. It’s honestly one of the proudest moments of my life post-cancer thus far.

Francesca & Megs at APOS Feb’19

Though I’m 20+ years older than Francesca, who is studying for the MCAT’s, she is authentic, thoughtful, brilliant and compassionate among other fantastic qualities. She floored me by saying she thought of me like a godmother, an aunt and a big sister rolled into one. She said I didn’t need to only think I can impart wisdom or share my memories and values with a child.

The way she said those words…her tone and inflection just touched my heart and gave me a new perspective on my infertility. As you can imagine, I was brought to tears but tears of joy and appreciation. Francesca was surprised I didn’t seem to realize that’s how she viewed me.

I had been so stuck on the grieving train thinking only about the loss of a baby or young child, I never thought about the true impact I could make and have apparently been making on an actual young adult outside the cancer world. I’ve mentored over the years but never had anyone say what Francesca said to me with such sincerity.

Yes, I still feel the loss of choice, but have gained a new and unexpected perspective on this loss.  I do have so much love to give and little words of wisdom to impart. I’m usually very observant but completely missed seeing I’ve been making a positive impact on someone for almost two years.

My life on the cancer train just took a lovely turn on an unexpected path which has given me a new sense of hope and purpose. Words matter. I see now that I matter too.

The Insanity of 2019

I can’t believe 2020 is around the corner. Just when I think a year can’t get any worse or filled with more challenges, I get a whole new slew of health issues. I’ve been reflecting a lot this week. I will make this a two-part series to discuss these challenges and the extraordiary opportunites of 2019.

I compiled a list of health issues that plagued me this year. Get comfy because the list is long!

February

Tried my 5th post breast cancer medication called Aromasin (Exestamine) to help prevent recurrence. Once again, my body is completely intolerant of it. It stressed my body out so badly within the first two weeks that I developed shingles on my left arm, hand and left side of my face.

For those who have never had the shingles, it’s essentially adult chickenpox. According to the handout my dermatologist at Preston Ridge Dermatology, PC gave me, here is the definition of shingles.

They are a painful skin rash that often blisters, caused by the zoster or chickenpox virus. Anyone who has had the chickenpox can get shingles. A weakened immune system seems to play a role in re-awakening this dormant virus, so people are more likely to get shingles after an illness, serious injury or stressful event. It usually occurs only on one side of the body.

Of course mine would be on the cancer side – the left. They are extremely painful and have to be treated within a certain timeframe for antibiotics to work properly.

My oncologist (my 4th one in three years due to previous one retiring) officially agreed there are no other options for the type of breast cancer I had and my pathology. It’s always tough hearing that. He said the only thing left to try is only available if I ever become metastatic. Lovely.

April

I landed in the ER due to severe dehydration and vertigo. I had been feeling odd for about two weeks. My head was pounding. I was quite dizzy and nauseous. I just pushing on and going to work every day.

I started feeling a tightness in my chest and pressure. I had never felt like that before and having difficulty breathing. I was initially going to call an ambulance but knew the cost would break me thanks to the high deductible of my health insurance. Since I only live two exits away from Northside Hospital, I elected to drive myself ever so slowly to the ER around 2am.  I didn’t call my mother or even tell anyone what was going on just yet.

My BP was 187/112 when I arrived to the ER. I didn’t even know blood pressure could get that high. I was scared to death. I realized it must be serious because three doctors came in after reading about my breast cancer history. I finally called my mother around 3am. She was not pleased that I drove myself and waited so late to call her. Once mother arrived, that’s when the doctors told us they feared I would have a stroke. I wasn’t released from the ER until almost 10am after hours of fluids and getting my blood pressure down to a below critical level.

May

Literally two weeks later, I had developed what I thought was the flu. My temp was 104.1. After three days in this misery and temp not going down, I went to my primary doctor’s office and saw the PA. I was tested for the flu but was negative. Again, I was having trouble breathing. When the PA listened to my breathing, she didn’t hear anything concerning. I asked for an x-ray and she agreed. I wanted to be sure.

It was pneumonia!!!!! I wish I had taken a picture of her face when she looked at the x-ray. She shook her head in disbelief and kept saying, “I couldn’t hear it, and would’ve missed it if you hadn’t insisted on an x-ray.”

By this point, I was so physically weak from pushing myself so hard for years on end, that my body officially shutdown. I called my supervisor and said I needed a two-month medical leave. She was so fantastic and immediately supported my decision. It was so sudden in the company’s eyes but a long-time coming in my eyes.

I was basically an empty gas tank.

June

I had my 8th breast cancer related surgery. It was initially revised secondary breast reconstruction due to the extensive fat necrosis that had built up in the exact area of my tumor. During the operation, they discovered not only the extensive fat necrosis but an “underlying association of a necrotic cystic cavity with an extensive capsule.” To break it down, it means I had a thick capsule around the fluid-filled sac, evidence of an old hemotoma and the extensive fat necrosis. Nothing is ever easy with me.

So the pain was much higher than I anticipated. It was the first time ever that I finished a complete bottle of pain medication.  

December

I received a new diagnosis last Thursday. I am very upset this doctor told me I have spondylitis in my spine through the patient portal. I was to call and set up an appointment for next steps. I’m furious she wouldn’t call to actually tell me what that means. So me being me, I have been researching and still have no idea exactly which type I have or anything. I went to a website called myspondylitisteam.com and found this information below.

Spondylitis is an autoimmune disease, meaning that pain and inflammation are a result of the body’s immune system attacking its own tissues. No one knows yet exactly what causes spondylitis to develop in some people, but it is now believed that genetics play a significant role.

More specific subtypes of spondylitis include ankylosing spondylitis, enteropathic arthritis, psoriatic arthritis, reactive arthritis, undifferentiated spondyloarthritis, juvenile spondyloarthritis, and peripheral spondyloarthritis.

I pitched a fit and will be seeing a different doctor at Northside but at a different location than that other doctor. It is unacceptable to give me news of a new diagnosis through the portal.

Needless to say, it’s been another exceptionally rough and painful year on many levels – physically, mentally, emotionally, professionally and financially. Even when I want to give up and just curl into a ball forever, I continue to get up each day and push forward.

I suppose that’s the meaning of resilience. Something deep within will not allow me to give up even when I’m aching to do so.

My Breast Cancer Story on the Brain Cancer Diaries

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!

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.