the results

My blood results from my OBGYN were suspect.  However, I was more concerned about liver issues based on the vague comments from the nurse who advised me to see a primary care physician.

Seriously?  What the heck was going on?

I needed a primary. Hold on, let me offer up my first born, fill out a slew of paperwork and wait 3 months. (That's how it felt the last time I went down this path.)

The irony, I called my network and was sent to an AdventHealth physician office right next door to my OBGYN.  

Coincidence?   I think not! 

I made the appointment and sounded like a damn hypochondriac when I started rattling off all the things wrong me. 

(See prior post for dets)  

I felt fortunate my new primary care doctor (technically a nurse practioner) was open and listened and ordered me more tests.  

-A dermatologist appointment

-More - extensive blood work

-A chest x-ray

And she prescribed some acid reflex meds, just incase it was related to my cough.  Geez, acid reflux?  Could it be that simple? 

Ironically, my medical records at this point showed I came in for a cronic cough, nothing much about that annoying chest pain when I drank. (The key to my diagnosis)

And When it rains it storms!

While trying to get all these things done, including managing where I was suppose to get a chest x-ray, (It was misdirected, re-faxed several times and I had an insurance conflict initially) I had two root canals.

Agonizing tooth pain or chest x-ray?  I took care of my teeth and tried not to worry too much about the chest pain by not drinking alcohol and ignoring the fact that I knew deep down something was actually wrong.  

My blood work was enough to tip my doctor to think it could be something autoimmune related.  I needed answers.  I felt helpless. 

When I finally was able to get that dang chest x-ray my worse fears came true.  It was not good.  

"1. Right hilar mass worrisome for malignancy. Recommend contrast enhanced chest CT for further evaluation."

Wait. What? That word. It can't be......my world turned inside out and bubbled over.  

My doctor was on top of it and ordered a CT scan, STAT, the same day she left on maternity leave.

If I only got my scan before my root canals.  I beat myself up just a tiny bit.  

The above results were on April 25th, three months after I begged my obgyn for blood work.  

Roughly a week later I viewed CT results on my patient portal.  Words like "Contiguous mass mediastinum measuring 4.0 x 8.0 cm and this may represent a primary lung malignancy with metastatic adenopathy in the anterior mediastinum....."

I read it over and over.  I read it and I cried.  

I cried at my desk thinking of my boys.  

I cried because I was powerless.  

I cried because I didn't know if I'd live or die.

I cried on and off for a week.  No one called me. No one was advising me what to do.  I was extremely uncertain of my future.

All I could do was cry to process. My boys were not going to lose me, and I needed to remind myself everyday to hold it together for them.  

My boyfriend is a cancer survivor. He let me cry all over him.  He wiped my tears one by one.  He told me over and over I would be okay.  He looked me in the eye and clearly reminded me "You are not going to die....I'm not getting off that easy."  and I'd crack a smile. More importantly, each time he said it, I believed him a little more.  

I AM NOT DYING! 

I have so much life to live. 

He was the only person who knew and he made sure I didn't spiral out of control.  He was there every step of the way.

After getting my CT scan and no doctor calls, I was getting increasingly concerned and a little crazy. 

I needed to know what was wrong and I needed to know now.  I could not bare the thought of one more weekend with no plan.  I needed to speak to a doctor and stat.

With a lot of perseverance on a Friday, a few calls to corporate, a push to speak to management at my primary care and a boyfriend who gave me a voice to be heard, I was finally directed to the proper doctors. 

By Monday, I had an appointment squeezed in and biopsy ready to be scheduled.

After a few agonizing weeks i received the results.  I was extremely grateful that each of my doctors called multiple times and worked hard to get my final diagnosis.

When the day finally came, I was at my Oncologist office and just as we walked out without results, she ran after us with eager news.  "I have it.  I have it."  My Pulmonologist was able to get my results sent to him and routed to my Oncologist instantly.  

I looked at the screen and there was my answer:

Hodkins Lymphoma 

I could now breathe.  I could now begin my path of healing and take the steps necessary to live a life from a brand new perspective.

It was time.  

how did you know?

Often people have asked me how did you know you were sick?  What prompted you to go to the doctor?

This is such a great story because I didn't know.  

I only knew something was not right, but we never really think: "Oh my God, I have cancer!"

That is always worse case scenario.

A few things had happened before I dragged my butt into my gyno for an overdue check up.  I had told myself, I'll get that pap and will convince her to get me a blood work up.

Accept for the fact that it sounded crazy trying to explain to her why I wanted that blood work in the first place.  

This is how it all began:

I had a rash on my right arm roughly 18 mos ago. Right around the time we were quarantined for Covid.  Yes.  A rash!  One that would not clear up.  The more it itched, the more I scratched, the more it would not simply go away.  

Little ichy red bumps on my arms, it soon appeared on my left arm and eventually it was my feet and legs. An itching attack was so bad at night, the areas became infected and my feet swelled.  I was a damn near mess.  

In the mist of itchy arms (before my legs and feet jumped on board)  I had a nagging cough.  I wholeheartedly believed it was a post covid thing, but really I didn't even know if I ever had Covid.  

The two issues isolated appeared to be two very different problems.

1. Rash breakout (about 18mos) 

2. On going, uncontrollable cough. (12 mos)

I was taking Claritin D to make myself feel better for about a year solid.  

Something was wrong.  I know it, but had no idea what to do.  

Of course during covid high times, it was impossible to get in with a primary care physician and urgent care didn't think anything was really wrong.  The cough was not in my chest.  I was told it was all upper sinus and urgent care prescribed me a nasal spray and something similar to Clartin, but a stronger.

I went on with my life thinking I'll be fine. 

Around October 2021 I had routine breast exam. The results were fine. 

Although, I believed all was good, around the same time or soon after, I noticed each time I drank anything alcoholic the upper part of my right breast hurt a bit.  Not terribly bad, just enough that I started paying attention.  This is when I started wondering if something was missed in my mammogram.  

1. RASH

2. NAGGING COUGH

3. CHEST PAIN (when I drank alcohol 🍸- Champagne being the exception) 

What is wrong with me?  Something was very wrong.  

The rash moved to my legs around December 2021.  The pain in my upper chest area progressively got worse and I could feel a lump or mass beginning to form. I was concerned, but I didn't know what to do.   

I googled a ton of things and maybe at one point I thought, what if I had cancer, but I instantly flushed those thoughts away.  

I made excuses:  

-I'm too young. 

-I'm healthy.  

-I have a really good immune system.  

-I do not get sick. 

The rash had become a huge issue in my life.  I was uncomfortable, it looked horrible, and nothing I could find online aligned with what I was experiencing.  Nothing was giving me relief.  

It was so bad I refused to get pedicures.  Imagine no pedis? I bought a $10 nail polish from Publix and painted my own toes, because my legs were too gross to show anyone.  

By January 2022 I hit my gynecologist up for that blood work. I was getting desperate, but I was going to find out what was wrong and I was going to push for results.  

Stay tuned......

For the results that were nearly impossible to get.  

It is scary.

There is no sugar coating the truth when it begins with, "You have Cancer." 

Those words are etched in my brain like a monument of despair.  They scream at me without making a sound.

It becomes a shadow in your reality of what is and what isn't.  

I believe we all process such a diagnosis differently.  We can accept or deny or do.  We may look for external support or form a bubble for our most trusted friends and family.  We may approach one way and then shift gears and try something different.

The truth is, no one really knows how they will attack the truth of cancer until they have it. And how it filters to the world around us is truly an unknown.  

I have been through so much.  I have taken on the world and pushed through many hardships.  My life has been a series of positive experiences and disappointment.  

Every nugget of happiness has it's sad counterpart.  

My mind, body and soul are made up of all that has been good and all that has been bad.  That is how we evolve in this ever changing world.  

However, I must admit, this in a different realm of existence.  The unknowns related to being sick are different each day.  There is zero control.  There is no definitive end game. (This is the hard truth) 

No one knows how things will progress, it is up to each individual person.  The physical, mental and emotional burden is a tryfector that each person must manage the best they know how.  

Each aspect intertwines like an octopus grasping for survival within.  Our mind is compromised.  Our body harmed.  Our state of emotions are unrecognizable.

When people ask me, "how are you doing?," I often don't even know.  Just when I think I'm doing really well, cancer slaps me down, laughing, poking me with symptoms, reminding me, it is still here.  

I have needed a reason to tell a new story.  This is not the story I would wish on anyone, but I needed to share all of it, including the fear.  

I will share how I learned I had cancer.

I will share my dark space of acceptance.  

The tears of agony that no one will ever see.  

I will share the strength only I know I am capable of.  

I will share the weakness I often hide behind a joyful smile.  

I am living with cancer.  I will share my truth.  The highs and the lows.  It's the only way I know, writing and sharing is what will help me thrive and survive with gratitude. 

This journey isn't pretty, yet it will imperfectly paint a picture of what it means to truly survive in an arena that has no boundaries. 

Today I am alive. Today I will live.