Body Malfunction.

I probably don’t write as often as I should–simply because Cancer does not deserve anymore of my time or energy that it already has and is taking.  However, I think my journey and my story needs to be told.

Cancer is not discriminatory.

Cancer can and often times does impact people who thought, “It will never happen to me!”  Then reality hits–it happened.

In the past several months, I know several people who are dealing with their own cancer journey.  I admire them and I understand to a point what they are going through.  Cancer is different for everyone who has it.  Just because you have cancer you may or may not look sick everyday.  You may, and often times do carry on in your normal routine.  Fact is, you should.  Don’t stop doing what you love because as a co-worker told me, “Your body is malfunctioning.”

This same co-worker reminded me that when we tell people, “I have cancer” it can come off as a moment of being excited, like you have won the lottery, or you are happy to have it.

 It made me think.

She is right.  The statement, “I have cancer” seems like a positive thing.  It’s not.  I have never met someone who said, “Damn! I am so excited I got this cancer!”  NOPE!    So, she told me tell people, “My body is currently malfunctioning…”  Which is true if we think about it–the silly thing we have grown into for our entire life is NOT doing what is normal.  Thus, it is malfunctioning, similar to a virus that impacts our computers, or our phones act bizarre–that is malfunctioning.

So, my body continues to malfunction.

With the help of a core group of friends, family, and others who are praying, offering support, asking what they can do, etc.  Thank you.   This is my malfunction and I am coping–maybe not the way the person who sits next to me when the immunotherapy treatment is being injected into my body, or when I am sitting waiting for my appointment or one of the many, many test.  But, I am doing it.

I haven’t given up.

A young and beautiful lady who I will refer to as N.S. came up to me a couple months ago and said, “you didn’t recognize me when I said hi to you at Subway…”  Reality is–no, not at first, but after looking at her–I recognized her and I said hi back.  I did not question the material that covered her head–I thought it was a fashion statement because every time I see her she is always put together and dressed to a “T.”

A few days later we got to see each other again–and she tapped me on the shoulder and said, “I have to tell you something…”  I waited with the dawning moment of the light going on in my head of why she was wearing the scarf over her head.  “I have breast cancer, and that is why I am wearing this.”  I looked at her and said, I would never have known if you did not tell me.”  She and I talked about it for a while.  I could start to see the signs in her weakness, her voice, and her eyes.

We connected.

Our cancer is entirely different.  Our journey is different.  Our pains are different.  Our treatments are different.  What is NOT different is that we are both still alive.  Still fighting.  Still maintaining the faith.  Still keeping that smile on our faces and understanding what steps we must take to fight the malfunctioning of our bodies.

Since that meeting, she and I check up on each other.  Just to send a message or a text here and there to see how things are going and such.  I believe our friendship has grown out of the cancer.  We shared things that those with cancer would have no true understanding of, just like a man does not know what it is like to have a baby.

She and I are still fighting.

More recently a co-worker’s husband R.W., was having atypical pains after eating–never thinking a relatively healthy man was about to find out something that would change his life was brewing.

The results came in–cancer.   Life changing.  Family changing.  Our bodies change mode of defense.  Our loved one change.  Emotions run high and they run low.  The day-to-day motions change.  Our friendships change–the malfunction is real.    The fight is even more so.

When his wife comes to work, we talk, but we don’t always make the conversation about cancer.  I will ask how he is doing, while wondering how is SHE really doing?  The spouse and close family/friends carry a burden as well.   I watch her optimism.  I watch her love pour out for him.  She is there for him–no matter what.  She is the same lady who told me to change the wording of “I have cancer to my “body is malfunctioning.”

A dear friend, C.C is perhaps a living example of the concept of true love and compassion for his wife, D.C.   D.C is my hero.  She has been through A LOT over the years…. Weekly shots, medication, surgeries, feeling good to feeling bad,  bad news after bad news, yet always seems to be in good spirits.  Medication after medication she still fights her malfunctioning body.  Her husband right by her side.

Her positivity and her will to fight on amazes me.  I question my fight to go on frequently, then I realize WAIT a FREAKING MINUTE.  This lady, D.C., has been fighting for years and HAS NOT GIVEN UP!!! So, she became my motivation, my internal support, my hero… WHY my hero?  Let me tell you why…  She fights daily.  She isn’t saving lives out of burning buildings or racing to police call (the typical heroes, you know…)  SHE IS FIGHTING EVERY SINGLE DAY TO LIVE.

That is a hero.

Seven years later I still haven’t met D.C, but C.C. and I talk daily through text always with a positive and comical message to hang in there, how are you,  let me know if you need anything…. DC and I are here… WAIT!  STOP!

DC and CC both have a lot going on with the body malfunction, yet—out of the most sincerest of places comes the words, “LET US KNOW IF YOU NEED ANYTHING?!?”   Others before self came to mind.  Despite her malfunctions and the daily fight to live–she and her husband still care enough to help someone else who has a body malfunction as well.

HERO.

DC and CC are inspiration when I feel that the world is coming down on me and that I AM the only one with cancer…. I am not.  I know this.  I admire every single fighter, those who one and those who died fighting–they won the reward of eternal rest.   DC who I am sure has her moments of weakness still finds it in herself every day to get up and live life.  How can I not learn from her?  I have to.  If she is fighting… I need to fight with her… We both need to keep going.  She doesn’t know that she is my motivation for getting up every day and taking the 5+ pills, inhalers, and treatments while dealing with the not so pleasant side effects.

SHE empowers me, through her husband and through her post and text.  She lives on and deals.  So, I must do the same.  Would it be easier to let the malfunction win?  Sometimes yes.  But, in the end we fight.

Warriors–is what my friend in Perryville, LT calls us.  She is one the sweetest ladies I know.  Again, she has her own story.  She too had a body malfunction–TWICE.  Not everyday was easy.  She fought hard and yet did not give up when it may have been easier.  She never lost her faith in GOD, which sometimes, I struggle with–WHY did God allow this to happen to me?  Why?  The answer is not present.  But, I am reminded by her words, “God does not give us more than we can handle…”  Well, sometimes I call that into question–then I get a message from her, a  heart on a post I made,  or a positive comment when I am questioning my Faith.

My Faith is strong.

I can choose to be mad at God or I can choose to take this malfunction as cross that I need to carry.  No, I am not being punished by him, but I am being taught something that you can probably find in any cancer patient–You are never alone.  LT never lost her faith–always has been deep in the faith–even when bad things happened throughout her life–she never lost the smile, the bubbly attitude or the FAITH that God has her in the palm of his hand.  Sometimes her comments come when I am in my low moment of life–and at that exact moment, may not be ready to read it, but I do read it and I think about it and then I understand.  It could be worse.

Two times through cancer myself I can understand her journey–right?  Nope!  Everyone’s journey is a bit different.  She worked in a hospital caring for others who were sick,  raised a family, maintains a marriage,  cares for her four-legged baby, and never gave up.

Defying doctors recommendations to stay inside…She would cover her head, put on her mask and make her way through the grocery store to say hi to my mom.  She continued to live life despite the malfunction.  Despite the need to have to stop after eating a meal because the body processes things differently.  She found the humor in it.

Humor.

Can you believe anyone can find humor in a malfunction?  That is where faith comes in for her.  She had to stay true to who she is and that was the smiles, the laughs, the bubbly, the motherly one.  She had to find humor in the darkest of her moments in life–because for her that helped get through it. 

I get it. Sometimes, you have to laugh in order to cry and cry in order to laugh.   I get the humor, now.

I am gifted–wrote about book about the spiritual gifts that I have and the ability to see things that many other can’t see–or choose not to see.  The power of touch is real.  The power of seeing even more real. I struggled with these gifts, but as my mom said the other day on my way to work, “You know maybe your malfunction is a message to others…from God.” 

Maybe she is right.  Maybe my message can help others.  I can’t take away the cancer, but I can understand it.  I can understand the malfunction of the body.  A mystical and awe inspiring body that can do many things. Yet, it too, can be set up for malfunction.

I am not mad at having this malfunction.  Others have it too.  I am not envious of those running down the street while I am get out of breath and tired from walking from the garage to the kitchen. I am not angry that some people can eat like a monster and not have a stomach issue, but if I look at Mexican food I am already in the bathroom…

It is life.

When people ask me how I am doing… I often respond with, “I am living”  Why?  Because I am.  People can’t take away how I am feeling. I don’t want them to treat me like a patient or a zombie that has a disease.  I wanted to be treated like Nick.

I am living.

I still do what I love and I still find inspiration to write, stay in my PhD program, show up to work everyday,  never make a student feel that I am absent, or stop loving because I am malfunctioning.  Everyday is not a great day.  There are setbacks. There is good and bad news.  I have days where I feel like I am flying high and days where I just feel like I exist.

Don’t cry for me.  Don’t feel sorry for me.  Don’t.  Unless you caused this malfunction–you are not responsible.  This is an important message for anyone who has a loved one malfunctioning right now.

Live life.   Don’t say it can wait until…. DO it now.  Don’t have regrets.  Make life as normal as possible.  Cry, laugh, be mad, be happy.  Just be.

Those on this malfunctioning journey will also deal with the ups and downs of the person they care about or loves malfunction.  Some days will be good and some will not.  

For the supporters–listen closely to what the fighter is telling you.  Listen for the sounds of hope and be hopeful with them.  Pray for the faith and you will see the faith running over.  Be happy and be sad with them.  Don’t try to fix it–Support them.  Some days will be good and some days will be bad.

Listen.

One thing a malfunctioning person understands more so than ever is the body they are living in.  We can start to sense and feel things that didn’t exist before the malfunction.  So, listen to them when they say they feel good–celebrate that moment.  Listen to them when they say they don’t feel good–and support them.   Just being beside them is often support enough.

Don’t miss a moment they want to be around you.  You may never get it back.  Don’t put off what you think can wait, because sadly that time may never come. Don’t let the vacation time rack up–take it.  You can’t take it with you if you aren’t around.  Become understanding that cancer does not look the same on everyone.  Don’t assume you know what they are feeling.  Don’t distance yourself because you are afraid or uncomfortable. WE are the same people as before.  We are just malfunctioning.

What I ask is for understanding.  It does NOT have to be a part of everyday chat, but maybe sometimes it needs to be chatted about.  Attend services with them.  Pray with them.  Hold them tightly. Hugs are contagious–cancer is not.  Don’t be afraid to love them more.  Make more time for them–because time is NOT promised.  Don’t assume you know how they are doing and try to compare your illness with any other one person.  The reactions from the medications and treatment is different for everyone.

Be respectful of privacy. Some days we may want to talk and others we may wish to be more silent.  Nothing against any one person, just sometimes the load becomes heavier than other days.

IF the person who is having the malfunction tells you that you are CORE CANCER LIFELINE (CCL) then understand that comes with responsibility, understanding, compassion, thick skin, love and most of all time.  Time is important. 

Time.

Time is not promised to any one of us–even the healthiest of the health to the worst of the worst.  Cherish all the time you can.  If the person says, they need you–they need you.  Don’t bargain with them and don’t dismiss the need.  The need may be to sit and laugh or silence, to watch a movie or drive around.  The need may be to help with a simple task or a complex one.  Just be willing if you are accepting the role of the CCL this is important.

For me, time is important.  I have a group of CCL’s that I hope can understand the needs and understand that sometimes I may not be on my best, but it is never directed to them when a down moment or lashing out occurs.  It is all apart of the malfunction.

Malfunction.

It has been a while since I updated everyone on my malfunction–but here goes.  (NOT all good and not all bad).

I am a stage 3A NSCLC patient.  The cancer has spread to some of the lymph nodes around the lung where the cancer originated.  The cancer has stayed on the right side of the body and the left lung remains clear and functioning.

I knew things were wrong and not going well when I was starting to feel worse… The development of head pain, nausea, some additional weakness, tingling sensation in my arms and fingers.  Numbness at night in my arms, Some unsteadiness, finding it at times hard to articulate my words and most of all a chance in my attention to things.  Now, let me be clear I am still functioning and I do NOT have all these happening at the same time.  Nonetheless, I know my body.    

Several new test have been done a CT scan which revealed what I just shared, and a MRI of the brain and neck.  A small spot was discovered on the back of the head which will be further tested with a PET scan soon.

Good news the tumors on my lung are shrinking—one is gone.   The other good news– I am still alive to write this. 

They have changed my immunotherapy treatment from a lower dose to a more intense dose, called OpDivo for you who want to know the drug.   They also mix it with YERVOY.   The idea is to work on the immune system–it can also impact other parts of the working immune system.

Last week I had my first dose.  

In the past week I have  experienced the effects…pneumonia like systems,  cough, shortness of breath,  #2,  tiredness, dizziness, irritability, less hungry,  cold,  even sometimes a deeper voice (not a bad thing)… and some itching and rashes along with ulcers/sores inside my mouth— SOUNDS SO SEXY, doesn’t it?    Stiff neck, fever, sleepiness (i am tired, but wake up and can’t sleep), and joint pain.

So what happens with the treatment…. Every two weeks for about an hour, I leave the “normal world” and I enter into a place–filled with chairs, and IV’s, people sleeping, talking, laughing, reading, doing word games, etc.  Some have folks next to them, some don’t.  I walk in and they initially look up, but then back to the task they were doing.  Some look weaker than others… Some are old and some are young.  All races, all genders, all religions–but all people.   I sit down, roll up my sleeve, wait for the words, “You will feel a little prick…”  Trust me it’s nothing… Then they clean the line out.

They hook it up to this bag of clear liquid.  A clock starts.  The drip starts. The first few times I stared at the drip for the entire time thinking—THIS IS GOING TO TAKE FOREVER.

As I focused on each drop from the bag to the line… I began to think about all the goals, the dreams, ambitions, family, friends, memories.  On each side of me, I wasn’t alone.  Papa and Mimi are always there with me.  Yes, they are dead, but the spirit they had isn’t.  They hold my hand.  Mimi talks about lottery tickets and papa reminds me of the days in the creek catching gogali (rock bass).  Those were the memories.  They sit with me. I smile, I tear up.  I let them talk.

I look around and I see all the other spirits (I am a medium, if you haven’t figured that out–SURPRISE).  I think and wonder do they know they aren’t alone.  Sometimes the auras around people are sad and sometimes you know the treatment is working and soon they will likely return to what we call normal life…If you know what that is–you aren’t normal.  

I let the memories fill my head, not the fact that I am sick and this is a strong potent drug being put into my body.  I pray.  I think.  I think a LOT!   It’s an hour that I could be doing something else, but I need to be here for me. Not for anyone else, but for me.   ME.

.The drip stops. I sit for a bit longer. The nice nurses come on over… Take my BP,  check some other things and then pulls out the IV.  A bandage stays on for a whole 2 minutes because I don’t even bleed that much anymore… I roll down my sleeve and head to my car.

Passeby’s on the highway probably don’t know what is going on in the building I am leaving from.  My seat is now empty and waiting for the next person.  I get into my car and reality of life hits me.  Tears, sadness, worry, and even loneliness greets me on my drive home.   I text people, I call people, I listen to music. 

I drive.

For the next 6-8 months this will be the new routine.  The likelihood of fixing the malfunction is okay.  More test.  More treatments. Lots of pills. Inhalers.  Changes within my body.  All will be present.

If you are my CCL and I don’t even know it–THANK YOU.   If you are and I do know it, remember that I don’t ask or burden you with small things.  Sometimes I just need you at that moment.  Be that moment.  Be ready.  Get your armor on and be there.

You will see me with my book bag in tow–that is my walking pharmacy. If I am walking slower than other times–just walk beside me if you stroll on up.  Don’t miss an opportunity.  

It could always be a lot worse–I know this.  I see it.  I hear it.  I told the stories of it.  I am not feeling sorry for myself, nor should any cancer patient.  WE are entitled to our good/bad days,  happy moments/sad moments.   We are allowed to be less active and less social.  It’s not personal. It is the malfunction.

Don’t be afraid to ask, but don’t be shocked or afraid of the response of what may follow.  I realize that things look darker than normal for me. I get it.  I choose to think more positive.  If I am a bit more weak with certain people–that is because I feel I can be.  It is not a punishment. It is a connection.

The malfunction.

It is real.  It is mean.  It wears the faces of many and it impacts everyone differently.  My journey is similar, but not the same as the next.  We all deal differently.  We cope differently.  We choose differently.  WHY?   Because we are all different.

I am malfunctioning and I working on the repair.  Whatever the outcome may be I am fighting each and every moment–even if it looks like I gave up. Be mindful of my changes in who I am, sometimes I can’t control them.  If I tell you “I want to see you, or need to see you,” understand it is not because i want pity, but because CANCER teaches you a VERY important lesson–you never know when your time is up.

Even if the outcome for me isn’t what one can hope–I never gave up.  I fight and I have fought. I am not weak.  I am not alone.  I am not faithless.  I am not mad and I am not angry.  I am me.

I am me who is dealing with a malfunction within the body.

This is my journey.   This is me.

This is my malfunction.

-Love, peace, faith, hope, and strength,

Nick

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