Layered Loneliness

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.

Until next time,

Warrior Megsie

Cents & Sensibilities

It’s been a slightly difficult start to 2020. Toward the end of 2019, I spent hours on the phone with insurance, my primary, oncologist and doctor appointments fighting to get an MRI approved for my lower lumbar spine. Pleased as punch that I got my primary and oncologist working together as a team. It was a weight off my shoulders to have two exceptional doctors and a nurse advocating just as hard as I was to get it approved, especially during the holidays.

The good news is after being denied for the MRI twice by Cigna’s third party, my oncologist had a peer-to-peer discussion with them earlier this week. As of Thursday, January 2nd my MRI was approved. I was already organized and had rescheduled it two weeks ago for Tuesday, January 7th and will discuss the results and plan of action on Thursday, January 9th.

So, while I’m proud for advocating for myself along with my medical team, I’m still pretty pissed that I will be responsible for paying 80% toward my deductible since the MRI approval came on the 2nd. I truly do feel like Cigna did that on purpose so they wouldn’t have to pay because I had met my deductible and was $75 away from being covered 100% by the end of 2019.

It’s downright criminal that many of us must fight to receive the coverage and tests we deserve. Then we’re often stuck with huge bills that seem never ending.

A new year always brings added stress because of high insurance deductibles. Am I happy to have insurance through my employer? Of course, but it comes at a steep financial cost since I have to rotate between an MRI with contrast or an ultrasound every six months along with my diagnostic ultrasound + the cost of medications + copays to specialists. Me being me, I’m planning on fighting my portion of the MRI cost and file a complaint against the insurance. Sure, nothing will probably happen in my favor, but I must at least try for my piece of mind.

I do believe those pesky lesions on my spine are benign, but who knows what’s been growing there all this time since fighting with Cigna. Will they have to be burned off? Hell, if I know. Plus, will I have to get injections in the lower left side of my back to deal with this spondylitis? Will PT be part of the plan too?

All I see are dollar signs and scheduling conflicts as I move meetings at work to make it to appointments.

I’ve had people tell me to enjoy life, go on vacation and travel. I get so infuriated when I hear those suggestions. My insurance deductible through my employer is $6,500. How am I supposed to have fun and go anywhere or even save when that kind of cost looms over me? Getting critically ill is expensive and ongoing in the aftermath.

I want to go to different cancer conferences this year to meet more of the fabulous cancer warriors I’ve been talking to on social media but can’t take that kind of time off from work or have the extra funds since it all goes toward my high deductible. Yes, I know there are travel grants, but as I get older, I don’t qualify for some of those anymore. I’m at a weird age where I’m still “young” but not young enough to be eligible for some grants. Plus, I don’t have the energy to fill out applications once I get home from a very long day of working. I’m often mentally and physically spent.

As many look upon this new year as filled with possibilities, I’m already feeling the financial stress due to my health and the financial toxicity that is US healthcare.

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.

When the Strong Weep 5.0

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.

Be positive.

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.