REMEMBERING AN OLD CHALLENGE WHILE FACING A NEW ONE

Marie in Garden September 2019

In the past, on November 7th, I always posted about the significance of this day to me. You see, on November 7th, 2000, I had surgery to remove a small benign brain tumor, and it was one of the most challenging yet transformational experiences of my life.

But this year, I didn’t post about that experience because I’m facing a new challenge.

If you read my post from September 4th, you know that I’ve had some serious health issues.

I haven’t felt like posting since then because I’ve been trying to conserve my energy for the healing my body needs to do and for the procedures I’ve been going through.

But I feel it’s important to share my story now because you never know who will see it and be able to provide information that might help me figure out what’s going on, or by chance it might even help someone down the road who faces the same health issues that I’m having now.

So here it goes.

Over the past 3 months, I’ve had six emergency room visits, countless chest x-rays, scans, blood tests, biopsies, an EHCO of my heart and an MRI of my head, and numerous appointments with the critical care pulmonologist who is caring for me.

The cost of my medical care over this time is approaching $100,000, yet I still don’t know what is causing the serious issues I’m having nor do I have a diagnosis that would allow for any kind of treatment.

Let me give you a little history:

On August 8th, I had an appointment with my primary care physician, who ordered an x-ray of my chest because I had cough and pain in my ribs under my right breast.

The x-ray showed fluid in the right side of my chest and nodules on my right lung. Due to the findings, my doctor ordered a CT scan with dye of my chest, which I had done on Monday, August 12th.

I could tell by the look on the technician’s face that what she saw on the scan was not good. But I had no idea how bad it really was.

At 5:05 p.m. that evening, I received a call from a doctor in my primary care physician’s office with the shocking results of the scan: I had a large pleural effusion, which is fluid in the chest cavity, on my right side that had almost completely collapsed my right lung, a mass in my upper right lung, and the lymph nodes on the right side of my neck were swollen so severely that they were blocking blood flow to my jugular vein.

Listening to the doctor’s words, I went in to shock, and handed the phone to Michael because I couldn’t process what he was saying.

The doctor told Michael that he was referring me to a critical care pulmonologist because he believed that I had cancer.

He ended the call with a compassionate “I’m so sorry.”

Michael and I hugged after he hung up the phone, and I cried. It was a surreal moment that seemed absolutely impossible because I take such good care of myself.

But no matter how “unreal” the findings of the CT scan seemed, they were real and had to be dealt with immediately.

My body confirmed that as it struggled to try to compensate and overcome whatever was going on inside of it.

Michael and I didn’t sleep much that night, and when morning came, I knew I needed to get medical attention right away because I could barely stand or walk short distances without losing my breath. So we got ready to go to the emergency room.

On the drive there, I told Michael that I didn’t have the energy to talk, so we quietly made the hour drive while my mind wondered if I would be able to survive until we arrived at the hospital. That’s how bad I felt.

When we arrived at the hospital, I was too weak to walk so Michael had to use a wheelchair to get me from our car to the check-in counter.

Because of the condition I was in, I was immediately taken to a room and placed in a bed between two other patients with only curtains separating us.

Blood was drawn, my vitals were taken, and nurses, admitting personnel, and the ER doctor came in to talk with me, all of them asking me questions about my health, if I were a smoker, and a million other things I don’t remember.

While this was going on, we received a call on my cell phone from the pulmonologist’s office I was referred to wanting to schedule an appointment with me.

Michael told them that I was in the ER, and within an hour the pulmonologist was sitting next to me, explaining my care plan, which required tests and biopsies to rule out cancer.

When he told me this, I cried, and he gently held my hand, looked me in the eyes and said, “We are going to find out what’s going on, and you are going to be okay.”

Even though, at that moment, it seemed impossible, I believed him.

The most urgent thing that had to be done was to drain the fluid from my chest that had collapsed my right lung.

Within the hour I was having a painful procedure done to place a chest tube in, through my back, which would allow the fluid to be drained. Once it was in, the nurse started draining the fluid.

While it didn’t take long to drain 1500 ml of fluid, yes,1500 ml, it was a painful process as my lung unfolded and expanded, causing me to cough and gasp as air inflated it.

The fluid was sent off to be biopsied. I weighed 8 pounds less after it was drained.

A biopsy of the inflamed lymph node in my neck was planned after this procedure, but as I was being prepped for it, I felt as though my body was in shock and couldn’t take anymore trauma. So the biopsy was rescheduled for the next day.

I spent the night in the hospital, not sleeping much because I was still in disbelief at what was happening.

The next day, I had to be squeezed in to the schedule to have the biopsy so it was early afternoon before I was wheeled from my hospital room to where the procedure would be performed.

Michael was in the room with me, and as I was being prepped for the procedure, we heard the doctor who was going to do it, say, “We’re looking for lymphoma.”

I was on my back, staring at the lights above me, but turned my head towards Michael with a terrified look on my face. He quietly said, “It’s going to be okay.”

I wasn’t so sure.

I was released from the hospital shortly after the biopsy procedure, feeling good because I could breathe so much better with two fully inflated lungs.

Now we had to wait for the biopsy results.

Fortunately, it was only a few days before we found out that the biopsies were negative for cancer.

Even so, my pulmonologist said that “lymphoma can hide” so he wanted me to have a PET CT to see if there were any other areas of concern.

I had the PET CT a week later, and it showed many lymph nodes in my chest that raised concern. It also showed that I was continuing to accumulate fluid.

Because of these issues, I had to have an invasive procedure to remove and biopsy tissue from my chest and the chest tube had to stay in so I could have the fluid drained as it accumulated.

Fortunately, again, no cancer was found in the tissue. But the chest tube ended up having to stay in for 5 weeks, which was painful and made it impossible to find a comfortable position to sit or sleep in because of the location of the tube on my back.

Over the next month I went through the many procedures I mentioned at the beginning of this post, but still no diagnosis could be made.

Then, in the middle of all of this, only a few days after getting out of the hospital, something dawned on me: I had had my teeth cleaned on August 5, only three days before I had the chest x-ray at my primary care physician’s office and eight days before I ended up in the ER.

I realized that after I had my teeth cleaned in March, the lymph nodes on the right side of my neck had swelled up a few days later and I felt like I had an infection.

I soon realized that I had been sick ever since I had a tooth refilled on October 12, 2018. After this procedure, I developed a deep, chronic cough and pressure in my chest that prevented me from lying down flat to sleep. In addition, I had constant pressure in my sinuses and small amounts of blood coming out of my nose.

I created a timeline of dental work I’d had since October and how I had gotten sicker with each procedure. It was astonishing!

I sent the timeline along with a letter explaining it to my pulmonologist, and also emailed him medical papers I found online about people who had experienced the exact same issues I had after having dental work.

While the information was compelling, my pulmonologist still continued to do all the tests necessary to rule out lymphoma and lung cancer, and even presented my case to the Tumor Board at the hospital because of how unusual it was.

During an emergency room visit on September 15, I had a CT scan of my chest done, which my pulmonologist had at my appointment with him the next day.

The results were nothing short of a miracle: Fluid was no longer accumulating in my chest and the mass in the upper part of my right lung had shrunk significantly.

He showed me the scan and with a big smile on his face said, “Cancer just doesn’t shrink on its own.”

It was such a joyful moment!

The only appointment that was scheduled at that time was a follow up with his office in 5 weeks and a chest CT to be done prior to the appointment to make sure my condition continued to approve.

Up to that time, I had done a lot of research online about dental work and the serious health issues it can cause, and I came across information that discussed reactions that patients can have to the materials in both silver and tooth-colored dental fillings.

I was convinced that I was having a reaction to the materials in my filling because I’d been sick ever since my tooth was refilled in October of 2018.

So I did research and found a biological dentist, who uses biocompatible materials to fill teeth, and scheduled a consultation and an appointment to have the filling replaced again.

I coordinated this with my pulmonologist, who wanted me on a short course of antibiotics and steroids, starting prior to the dental procedure.

I was feeling fantastic from the middle of September and for a week after I had the filling replaced on October 9th. The picture of me with this post was taken during that time. Then I started to feel the same symptoms I had after I’d had my teeth cleaned on August 5th.

A CT scan done on October 18 confirmed that fluid is accumulating in my chest again and that the mass in the right upper part of my lung is still there.

So I’m back to having more tests, and possibly a surgery, to try to figure out what is causing these issues that flare up after I have dental work.

As I mentioned in my September 4th post, I have found a place of “neutral” to rest in during all of this uncertainty. But I will admit that I have had days where I am depressed, anxious, and feel like giving up.

I appreciate the friends and family who have called, texted, and checked in with me over the past 3 months, offering support, encouragement, and information that has helped me through this challenging time.

I know that there is something causing the issues that are going on with my body and that we’re close to figuring out what that is.

If you have experienced anything similar to what I’m going through or know someone else who has and you can provide any information that could help me put the pieces together, please, please share it … because it could not only help me but also many others.

To all of you who are going through uncertain times as I am now, my heart is with you. I’m sending love and healing energy to you, hoping you find peace and patience on your road to recovery.

In spirit,
Marie Kukula-Tyner

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