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.

Burned Aging

I remember wanting to look older when I was in college. I used to volunteer as a reading tutor at a public elementary school my senior year. One time when I was at the school, a teacher told me to get to class. She saw me as 6th grader and not a 21-year-old senior in college. The fact I had my hair in pigtails probably didn’t help. I just recall being so upset that I was mistaken for someone so young. Now, I would give anything for that to happen again.

How come no one tells us how drastically cancer ages the body externally? Many of us internally feel older due to permanent side effects and other illnesses that were triggered by our cancer treatments and surgeries. I honestly never thought once about how much my face and neck would age.

Yes, I have always been on the vain side. Growing up in community theatre and ballet meant always looking in the mirror and looking the part. I always used to look years younger than my actual age, even in my early 30’s. This rapid aging is tough to accept because no amount of creams or concealer can fully cover it up.

I first noticed the aging of my neck. It used to be so smooth. Now it looks like lines of multilayered necklaces going down it. Quite shocking to see in the mirror. Why did I age in that area?

I honestly believe it has something to do with the radiation burns that went up the left side of my neck. I could see the beginning of lines then. I’ll never understand why I burned so terribly in so many areas (neck, back, under arm) aside from my left breast. Radiation was just as painful and horrific as chemo. This picture below still makes me cringe. By the end of my 33 treatments, the layered lines had formed completely across and down my neck. Instantly looking 20 years older in that area.

It has taken a full three years for the dark panda circles under my eyes to fade enough to where I no longer need to wear a pound of concealer to attempt covering them up. As you can see below in the pictures from three years ago, nothing could fully cover them up back then. Aside from looking fatigued, I looked…haunted.

It’s only recently that I no longer need a pound of makeup to cover the visibly aging skin. I just need half a pound instead! Seriously though, I continue to struggle with externally looking so different and just so much older. Then add medically induced menopause to the mix, and all hell has broken loose.

I don’t know my skin post-cancer. It’s dry and scaly in some areas now. The skin underneath my eyes has taken the biggest beating due to constant rubbing, new allergies to certain dye and contact dermatitis. I’m constantly trying different creams trying to find the right one to truly hydrate my skin.

Don’t even get me started on my lips! They used to be smooth too. Ever since the chemo days, I continually struggle with peeling and cracked skin on each corner of my mouth. Fortunately, my dermatologist gave me some cream that I use on my lips and under my eyes to help with the dryness. I never know what will cause another skin flareup.

It just boggles my mind that all this aging happened without zero warning. The physical changes are just so jarring. To everyone else, I look super healthy. I treat my face like a canvas. It is amazing what makeup and good lighting can do. I miss my thick eyebrows. It’s still strange to fill them in with a brow pencil. Now I’m a master at it.

Once the makeup comes off, I look a little gray, burned and forever fatigued. My face and neck are constant reminders of the trauma which is why I can’t ever NOT think about my cancer experience. It stares me in the face and plagues me daily.

My Breakup with High Heels

I braved the crowd and returned a jacket to the mall this afternoon. As I’m walking through Macy’s and other department stores, my eyes couldn’t help but see all the fabulous and sparkling high heels. They were on every corner – high heels, low heels, boots and wedges. I can honestly say my heart hurt a bit.

There was a time pre-cancer when I loved, LOVED wearing all kinds of heels. When I had my statuesque body, adding heels just added to the flair. I could strut my stuff like nobody’s business too. I could even run and do cartwheels in heels. Even when the weight started piling on, I still loved wearing my heels.

When I saw those heels today, I had a million tiny flashbacks to all the heels, especially heeled boots I used to wear. I would pretend I was on the runway and walk with long strides, swaying my hips.

Thanks to the Taxol chemo, those days are long gone. I had to breakup with my love of heels and wear flats because of severe chemo induced peripheral neuropathy in both feet. I literally do not feel the upper balls of my feet thru my toes. And do you know what I discovered? It’s super hard to find really cute and stylish flats, especially when wearing a dress or suit. That height I used to love is gone.

My long strides in heels have given way to short, quick steps in flats. I no longer feel graceful. I tried to push past my feet and make them work it in heels and fell. I still have the cute heeled booties in the closet. I wobbled so badly that it was embarrassing. Landing flat on my butt really hurt my pride.

Yes, flats are more comfortable but really missing that special feeling when finding the perfect pair of heels.

I’ve had to modify so many areas in my life post-cancer. When I tell people this, they completely invalidate me and tell me to just “try harder” or “you can do it if you push yourself more.” Neuropathy is serious, and my case is severe. No amount of turmeric, acupuncture or B12 is going to help. The nerves in my feet are literally dead. Dead. They never tingle or hurt like my hands, which also have neuropathy. My feet get super cold. I honestly believe that’s why I don’t have hot flashes while in medically induced menopause. I get cold flashes.

So, while many get dressed up for holiday parties in sparkling outfits with fabulous heels to match, I’ll be the one in the corner with the short legs in flats staring wishfully at your feet.

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!