Just when I’m teetering on the brink of a nervous breakdown, something hilarious happens that snaps me back. I had originally written a woeful post but deleted it after yesterday’s hilarity. Let me set the scene of what happened and why I’m in better spirits.
I’ve been under more stress than usual since the last few days of 2019 and the beginning of 2020 due to my health and an unexpected death in my family. My body tends to do something crazy to rebel against stress. As usual, it’s always something spectacularly visual. This time a blood vessel popped in my left eye. Oh, my eye! My eye!
Seriously though, the fact it doesn’t hurt is the only reason I’m not going totally bonkers or even crying. I was and still am rather pissed, but my body no longer handles stress well.
It is highly noticeable and looks quite hideous. I’ve already had people at work asking what happened and a cashier at a store ask too. For once, I’m avoiding looking at my face. I couldn’t wear big sunglasses today because it was extremely overcast and raining.
So, my hair appointment had to be rescheduled because this particular natural hair dye I must use, due to being allergic to certain ingredients, did not arrive in time. Well, since I’m looking crazy, I was perfectly calm and said to call me once it has arrived and I’ll reschedule. My feathers weren’t ruffled. I love Tiramisu Salon and have been going to them for almost 13 years.
Since I was out, I decided to get my mail. I usually check my mail once a week because I hate having to get out of the car often due to pain. I had a lovely surprise when I checked my mailbox.
It was this gorgeous French beret. I thought a friend had sent it since I have so many amazing, thoughtful and generous friends who love to send surprises. I had posted on my personal FB page about it, asking who sent it so I could thank them.
I was checking my wish list on Amazon to see if I could find a clue as to who sent me this stunning hat. Well, I totally forgot I ordered the hat off Amazon with Christmas money weeks ago!!! So, I surprised MYSELF!!! I literally have zero memory ever ordering it. So, it’s times like this where residual chemo brain comes in handy.
Should I send myself a thank you note?
All this to say, that even in a serious depressive state, my nuttiness always tends to poke through. I’m relieved I can still crack myself up even when the darkness tries to suffocate me. I was given the nickname Nut-Meg when I was 14 years old. Proud to say the nickname still fits.
Even through major stress, chronic pain, a popped blood vessel and grieving over my uncle, I can still find humor and channel my inner Bette Davis. I’m relieved the essence of me is something that breast cancer and this post-cancer insanity can never diminish.
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.
Let me tell you what happened Friday. I was in such a good mood. I had taken a vacation day. I woke up with my pain level at an 8, which is tolerable. I took my time getting ready, and then put on my very favorite Christmas hat which makes me giggle. It’s my current profile pic on all my social media. ‘Ain’t it pretty? I was off to my doctor appointment, and then lunch with my mother.
I thought for sure my follow-up would last maybe 15 minutes. That’s what I was prepared for anyway. The original doctor who ordered the CT scan of my spine did not call to tell me I had spondylitis. Heck, I didn’t even see the actual report of the results. She just sent a message in the patient portal to come see her. Naturally, I flipped out, complained and got an appointment with a different doctor within that practice but different location. It’s slightly out of the way, but a nice drive when I don’t have anywhere else pressing to go.
I immediately liked this new doctor because she talked me like a colleague. So, when she pulled up the report and read it out loud, I was not prepared for what it said.
I have two small sclerotic lesions on my L3 and L4 lumbar vertebral body. The report says they’re likely benign but indeterminant at this point.
I have mild lumbar levoscoliosis which is a kind of scoliosis where my spine twists and curves toward the left side of my body in a C shape.
Then it said I have mild to moderate lower lumbar spondylosis with facet hypertrophy in my L5 and lower spine. Spondylosis is typically a degenerative condition of the joints of the spine and is also known as spinal osteoarthritis. The discs, joints and ligaments of the spine are generally involved.
WTF?!?! Am I 43 or 543 years old?
So, instead of being at the appointment for 15 minutes and walking out with a treatment plan, I was there two hours and walked out absolutely freaked out! As soon as this new doctor read that report and my breast cancer history, she immediately called my oncologist in the room with me. Keep in mind, I had literally seen my oncologist on Thursday and had told him about this appointment. I liked how the new doctor asked my oncologist point blank what kind of tests he is going to order for me because it should come from him. I believe she is Ukrainian, and my oncologist is Russian. I had to listen intently because both accents are thick and fast.
Now I have an MRI with and without contrast scheduled on 12/26 and will get the results at my follow-up visit with my oncologist on 12/31. Once again a vacation day will be spent at a doctor’s office.
Those who think breast cancer is the “easy, free boob job type of cancer” need to be smacked. The complications and rapid aging it can cause the body leads to poor quality of life. I want so badly to apply for disability but know I cannot afford to live on pennies without insurance. Plus, I do love me some designer purses!
For those who missed my social media post about the on-call doctor who I called an asshole, you’re not missing much. I was super anxious and only have two emergency Ativan. I had called to see if I could get some Ativan or Xanax to tie me over either until Monday or thru the 26th. This so-called oncologist completely lacked compassion and empathy. He refused to help or even pull up my chart, which I asked him to do. He yelled at me for yelling at him and said, “I’m THE doctor. You can’t talk to me that way.” Um…no boyfriend, YOU can’t talk to ME that way. What an arrogant prick. After calling him an asshole and hanging up, the asshole proceeded to call back three times. I guess his fragile ego isn’t used to hearing the truth from a mere patient. I did not pick up. I already had my plan B waiting in the wings.
I learned a long time ago that I cannot trust the on-call doctors to actually listen or help, but at least it’s on record that I called asking for help. My friend Carla reminded me of my CBD:THC oil, so that was my plan B. It helped take the edge off so I could rest.
The responses of support and encouragement have been overwhelming and humbling by friends inside and outside the cancerland. Of course, you always have one or two cancer patients/survivors who have as much empathy and compassion as a baby spoon. My feathers get ruffled when other patients try to diagnose me. I know I’m not stage IV and pray I never will be, but when you start diagnosing me and telling me how you know everything because you are stage IV, that’s when I take issue. Fortunately, I’m not close to either one of those ladies who irked me yesterday on Facebook. I said what I needed to say and done with it. I just felt it was important to mention to not ever diminish someone else’s fear and anxiety without knowing their entire history or them personally.
After all, I’m only human with feelings.
This is not how I wanted to spend my last few weeks of 2019. Even if benign, the fear train is riding hard on the tracks because now I’ll have to be monitored in that area. I was born with a benign tumor on my right leg as a baby. So, it’s not my first time getting tumors and thinking they’re benign. Then if it’s cancer, well…I can’t even fathom it. I’m mentally preparing myself for either outcome.
I will not allow this to my last post of 2019. I’ve had a lot of good and thrilling opportunities to combat the negativity and challenges experienced this year. So, expect that uplifting post this evening.
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.