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What does Terminally Ill Means To Me!

How to Live with Being Terminally!
Frank R

Frank R

8 Min Read

Official Dictionary Meaning:

Merriam- Webster describes Terminally Ill as:

Definition of terminally ill

: having a disease that cannot be cured and will cause death

Word by Word Definitions

terminal, terminally

  1. : leading ultimately to death : fatal

  2. : approaching or close to death : being in the final stages of a fatal disease

  3. : of or relating to patients with a terminal illness

ill

  1. : the reverse of good : evil

  2. : misfortune, distress

  3. : ailment, sickness

What Terminally Ill Means To Me:

Let’s go to the year 2004- While living in Florida I was told I had Lung Cancer. I was told it was inoperable because it was in each quadrant on my lungs. I was told there was little hope I will make it through an aggressive “cocktail” of chemotherapy and then radiation. I ended up taking this “Magic Potion” for four years. Facing what I thought was a “terminal disease”, In 2008, I was told I beat the odds and am in remission.

Now let’s fast forward to August 2017. I have been having some major problems with dealing with my Sarcoidosis, Sjogren’s, and then I find out I have Parkinson’s also. I started on the Carbidopa-Levodopa and everything seemed fine. I had the shakes more on my left side than on my right. As the months went by I started to get other symptoms like loss of memory short term and long term, loss of balance, declining motor function and cardiovascular system. I had passed out 4 times since the diagnosis of Parkinson’s. I knew this was affecting my life , but me being me I just dismissed it as side effects. I also ended up receiving a loop monitor because I ended up having a stroke. I also ended up with 4th Nerve Palsy in my left eye and receiving double vision in both eyes.

April 2018- My ability to walk steady and my memory was getting real bad. My pain level moved from a level 7 to a level 8-9. It was so terrible that I could get myself moving.

I was asked to take an EVOKE test:

Evoked Brain Potentials, Evoked Responses, Evoked Potential Studies

Evoked potential tests measure the brain’s response to stimuli that are delivered through sight, hearing, or touch. These sensory stimuli evoke minute electrical potentials that travel along nerves to the brain, and can be recorded with patch-like sensors (electrodes) that are attached to the scalp and skin over various peripheral sensory nerves.

These signals are transmitted to a computer, where they are amplified, averaged, and displayed. The 3 major types of evoked potential tests are described here.

Visual evoked potentials, which are produced by exposing the eye to a reversible checkerboard pattern or strobe light flash, help to detect vision impairment caused by optic nerve damage, particularly from multiple sclerosis.

Brainstem auditory evoked potentials, generated by delivering clicks to the ear, are used to identify the source of hearing loss. They help to differentiate between damage to the acoustic nerve and damage to auditory pathways within the brainstem.

Somatosensory evoked potentials, produced by electrically stimulating a peripheral sensory nerve—that is, a nerve responsible for sensation in an area of the body—can be used to diagnose peripheral nerve damage and locate brain and spinal cord lesions.

Purpose of the Evoked Potential Tests

  • To assess the function of the nervous system
  • To aid in the diagnosis of nervous system lesions and abnormalities
  • To monitor the progression or treatment of degenerative nerve diseases such as multiple sclerosis
  • To monitor brain activity and nerve signals during brain or spine surgery, or in patients who are under general anesthesia
  • To assess brain function in a patient who is in a coma

When I received my results from this test and other neurological tests we found out that my long term memory is at 24% and my short term memory is at 17%. What a shock!! I knew my memory was bad but I didn’t realize how bad it is.

I was also told my cardiovascular and my motor function has declined terribly.

Then the BOMB came in! I was told by my doctor you have been downgraded from chronically ill to the dreaded words TERMINALLY ILL!

Since I have multiple illnesses that are attacking my brain it is extremely difficult to decide which disease is causing what anymore. I had tried every Sarcoidosis medicine that is known to help, but not one has worked for me unfortunately.

So here I was sitting in the doctor’s office with the doctor, the nurse and myself and I hear those two dreaded words. So my doctor left the office for a couple of minutes to “let me have some time to let it sink in.” It hit me hard at first!

He came back and asked me a real huge question.

“WHAT DOES TERMINALLY ILL MEANS TO ME AND WHAT AM I GOING TO DO WITH THIS NEWS?”

I didn’t hesitate and said” They are two words!” That is all they are! I am not dead, nor do I plan on dying soon! Don’t get me wrong I was and am scared. How can I not be? I am human, but something told me I am not done yet.

I have had to make many changes in life, but better to make changes than the alternative. No more traveling without either my wife Diana or my daughter Savannah.

I had to cut out many of my organization duties as my strength and my balance and more importantly my overall health has deterred my life.

So I decided what they say is to ” LIVE THE BEST DAY I CAN! (What that is up to my health when I wake up.)

DON’T GET ME WRONG I STILL AM FIGHTING, BUT I FIGHT MORE FROM HOME.

I have been lucky to have some great friends I the Sarcoidosis and the Rare Disease community.

In April , I was very lucky to be able to have Courtney Waller, a fellow Rare Disease Advocate suggest that I speak to NBC NIGHTLY NEWS and Geoff Bennet, a reporter for NBC NIGHTLY NEWS about Right to Try. At that time I knew I was terminal. I had to fight for the right of terminally ill patients rights to decide for themselves if they want to try a clinical trial after phase 1 of the clinical trial system without having a gentleman in a suit who doesn’t know me deciding the final say if I have can take a drug that may help, or may even save my life.

Why shouldn’t I have the say of my life?

I am terminally ill and if there is a chance that there is a medicine that might help me live longer my doctor and I should say yes or no!

Don’t get wrong, I believe that the patient should make sure that they have all information on the medicines that they would be trying and also have some discussions with both the doctor and pharmaceutical to see if this trial is actually something that might help you. Another reason is when someone like myself have been declared ineligible for 5 clinical trials because with the current system of clinical trials is that the pharmaceutical companies are looking for the “perfect” candidates just so that they can get approved for the next phase.

Also with the way the clinical trials are taking time wise, by the time you can even be thought of to be nominated could take 7-10 years for you, the patient can even try to sign up for the trial. Most chronically ill, nevermind terminally ill patients don’t have the time especially when the odds are against the patients.

Just so you know my advanced conditions and as well that I have multiple diseases I most likely won’t be eligible for any clinical trials. But if I can help maybe even just one person it will be worth it to me

So here is my opinion on terminally ill:

When I was first told I was terminally ill, I thought my left was done. I gave up!

But one night my Mom came into my dream. I remember her saying ” It is only your turn to die when you give up!” “You are not a quitter!””You have too much to live for!

I woke up that next morning and decide to take each day as it could be my last, but yet my first.

So what does it mean me? Every day it means something different! But everyday we only have one life to live. So enjoy life every day!

When you wake up enjoy it! Love yourself!!!

Author(s)

  • Frank R

    I advocate for the Sarcoidosis Community for all of those who can't advocate for themselves!

    Stronger Than Sarcoidosis

    Frank Rivera is a published author of two books "Walking in Silent Pain."  and "I Have Sarcoidosis but it Doesn't Have Me." Both can be found on Amazon. Frank Rivera has also published a medical paper with doctors, researchers and fellow advocates.Comprehensive #Patient partnership paper: Health-Related Quality of Life in Sarcoidosis: Diagnosis, Management, & Health Outcomes https://t.co/niiwZxUj7j Sarcoidosis of Long Island and Stronger Than Sarcoidosis have grown into an advocating organizations to fight for the rights for people who have this rare disease called Sarcoidosis. We fight for those who can't fight for themselves. We work with local, county, state and national government officials to gain recognition and raise awareness for this rare terrible disease Frank Rivera- President- Founder/President- Sarcoidosis of Long Island Founder/President- RareNY Thrive Global- Author and Blogger Frank Rivera founded Sarcoidosis of Long Island in 2012. In 2011 Frank was diagnosed with Sarcoidosis after being misdiagnosed with lung cancer for 7 years prior. Since opening Sarcoidosis of Long Island he has been a local, state and federal advocate for Sarcoidosis. Frank strives to raise awareness for Sarcoidosis nationally, but specifically in the government sector. He has represented the Rare and Sarcoidosis community as a speaker at two Congressional briefings for Sarcoidosis. Frank is a National Ambassador for Foundation for Sarcoidosis Research. Named RUGD Ambassador for Illumina October 2017 Frank organized RareNY in 2016, to raise awareness for Rare Diseases in the state of New York. He organized “A Day for Rare Diseases” on October 15th, 2016 in Long Island NY, in partnership with Global Genes, to raised awareness for all 7000+ rare diseases. In recognition of Frank’s efforts, Suffolk County and the town of Brookhaven officially declared October 15th “A Day for Rare Diseases”. Frank was nominated by Global Genes, a nonprofit that serves the rare disease community, for advocate of the year. Global Genes has also nominated Frank for their annual Rare Champion of Hope award. He has also been nominated for seven awards by WEGO Health partners over four years, Patient Leader Hero as well as Best Kept Secret, Lifetime Achievement Award and Best in Show Blog. He was also nominated by RDLA for advocate of the year. In December 2017 Frank was named People of the Year in the newspaper organization TBR News Media six newspapers one being The Village Beacon Record News. In 2018, Frank was interviewed by NBC Nightly News about the “Right To Try” bill. They did a whole segment on his struggles and strength dealing with these diseases. In 2019, Frank Rivera has promoted Awareness for Sarcoidosis with a billboard in New York Times Square on multiple occasions. Posting Sarcoidosis events, and Sarcoidosis of Long Island and Sarcoidosis patients getting a chance to show their faces in Times Square and their stories. He has also been in multiple television,podcasts and radio interviews both local and nationally raising Awareness all while being downgraded from chronic to terminally ill. He refuses to let his illnesses win and take over his life. His motto is "I have Sarcoidosis but it doesn't have me!" In 2019 his organization has worked on the motto of #YouAreNotAlone. Making sure no Sarcoidosis, and all rare disease patients know they are not alone and we are here for them for advice, support and will help find medical and mental health professionals when needed.