It has been an extraordinary time filled with opportunities I never dared to dream of. My confidence level continues to rise. I’ve lived more in that past few months than I’ve lived since moving back to Georgia from Los Angeles 17 years ago.
Even with these fabulous professional and advocacy wins, including a new full-time job that I’ll begin August 17th and multiple freelance gigs, there are still feelings of uncertainty. It’s not uncertainty about my abilities as a marketing and writing professional, it is an uncertainty of my body.
Chronic pain is not something I would ever wish on someone. It’s why my cancer journey takes so many gut-punching twists and turns over rocky terrain. I’m in the body of a mummy from the neck down.
There is never a moment where I am not in pain.
There is never a moment where I forget I’m in pain.
There is never a moment where I don’t curse this pain.
As much as I stress about a possible recurrence or metastatic cancer, I stress just as equally about how long I can keep pushing with pain levels that range from 6-20. I remember a telling moment at my 8th and final surgery related to my original breast cancer surgery that I had June 3, 2019 at Northside Cancer Center. While the nurse was prepping me with an IV, she asked what my pain level was at that moment. I told her it was an 8, and she just looked stunned. I was matter of fact and told her about my pain range and that an 8 was tolerable. She just started tearing up and said, “I’m so sorry you’re suffering so much.” It was honestly the first time any emotion had ever been shown by medical staff and I found it oddly comforting. For once, it wasn’t dismissed or even questioned.
My chronic pain is multi-faceted. I wish it were only from fibromyalgia. When you add severe neuropathy in my hands and feet, my senses become overloaded. Then add a herniated disc with a tear near the nerve where I desperately need another epidural steroid injection because the first one didn’t take, then I almost can’t think because the pain is beyond horrific.
It’s a disrupter of time.
It’s a disrupter of sleep.
It’s a disrupter of peace.
So, when others think my cancer story should be over, I simply say no. It never will be because I am reminded at every moment of every day what my cancer treatments and multiple surgeries did to my body. My body is gone. I don’t know this current body. We will always be strangers and never friends because it hurts me on too many levels. Others might be able to move past it, but I cannot.
I think back to the start of my breast cancer experience five years ago. The struggle to just survive the toxic treatments, multiple surgeries, blood transfusions, and complications post-treatment makes me wonder why am I still here? I was initially filled with such hope once I was officially declared as no evidence of disease – I refuse to say cancer free.
I am now infertile and in medically induced menopause well before my time.
I have fibromyalgia.
I have neuropathy in my hands and feet.
I have a bulging disc and slight tear near the nerve in my back.
And I discovered in January I have two benign lesions on my spine that need to be monitored.
I get so angry when I hear the following comments:
“Just be grateful you’re alive.”
“Cancer doesn’t define you.”
“Be happy you’re single.”
As I listened to various cancer conferences this month, the bulk of the female presenters often begin their talks with how they fought cancer to be there for their kids. Do they ever think about how crushing that is to hear as a single cancer survivor? I don’t mean anyone who divorced during or after treatment. I’m talking about the survivors like me who were single at the start of diagnosis and still single post-cancer.
When I think about it, I honestly didn’t have much motivation to “fight” to survive my cancer treatments. The main reason I did was for my beloved mother and cat Nathan (Natey) Edgar. That’s it.
I am single.
I often feel very alone.
I’m an only child.
My life post-cancer still feels quite isolating.
I don’t have many local friends. I know a lot of people locally, and have many acquaintances, but there is only one who I talk to weekly and would hang out with once a month before the pandemic. The bulk of my friends are out of state and in other counties. Many of them are married with children, or they have a significant other. I don’t really know many single and childless people – male or female.
I always hear that I should just get out there and date. Any guy would be lucky to have me. Well, I would say that would be a true statement, but my color makes dating tough. That’s a whole other story for another day. Now that I am in menopause and in chronic pain 24/7 makes dating feel impossible. The only time my dating life was pretty active, and fun was when I lived in LA in my early to mid-20’s.
I’ve tried so many different medications, surgeries, and supplements to help ease the pain, but nothing has fully worked effectively. What people don’t understand about fibromyalgia is being touched can cause horrific pain. It makes sleep difficult. It makes exercising difficult. It makes simply existing difficult. Then add permanent neuropathy in my feet makes walking difficult.
When I did try dating a little a year post-cancer, I remember one guy asked why I was walking so stiffly. I thought I could hide how painful it can be to even step onto a sidewalk or go up steps. I didn’t bother saying it’s due to cancer. Instead, I said I was sore from working out earlier that day.
How can I even think of dating when I literally cannot hide the physical pain?
Are there any single and childless cancer survivors who are also only children? It’s like lonely, on top lonely, on top of lonely. This is the one time being the only one isn’t an advantage.
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!
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.
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.
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.
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.
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.
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!