The Face of Perseverance

tough

The face of the toughest person I ever met and her nieces.   Warning: nieces like to climb on and beat up Uncle John

You wouldn’t know it from this picture except for the oxygen tube visible, but Felecci was gravely ill in this picture.  I don’t remember exactly when this picture was taken but it was within the last 2 years of her life.  In this picture, she needed a wheelchair to get more than 15 feet.  We had chairs arranged throughout the house so she could rest between rooms.  She needed 2 liters of oxygen just to keep her oxygen levels at 96%.  Her heart rate sitting down was 120.  If she walked to the kitchen, it would go to 150.  She was on medication for her kidney & liver as well as blood thinners.  She had Oxycodone and Ativan for pain and sleep if she needed it.

All she really wanted was to be able to go to the grocery store and cook dinner and be intimate with her husband like we were before Cancer was in our lives.

While I am dealing with the emotions of this now in a very active manner, at the time I blocked a lot of this out.  I was numb to it and the anger; I felt angry at god for creating an existence for me that included the torture of this wonderful woman.  Eight years of fighting cancer takes a terrible toll on the human body to say nothing of the emotional toll.

To her credit with some support from me, she never  allowed her disease to define who she was.  She went to sleep at night on Sept 12th, 2017 with concern for me and love in her heart; more worried about me than that she would be dead 2 days later.  She knew she would never wake up again, and still she only wanted to tell me how much she loved me.

As I was deciding if I was going to write another post so soon or give it a few days, I came to the realization that I don’t believe anyone has ever known the horrors my wife had to endure.  How each scar made her feel less beautiful; even though I couldn’t care about those trivial things.  How each setback took another piece of her life away from her.

She never allowed herself to give into despair.  Oh, she was mad/sad/upset at times.  But it didn’t define her.  She didn’t sit and think about herself as the poor cancer patient.  She is an example of how to live above adversity.  Here are some of the things just off of the top of my head that she endured in eight years.

Pain

Felecci dealt with chronic pain for several periods during her fight with Cancer.  When her bone marrow was especially bad, she would get these terrible pains in her hip.  I would jump out of bed 2-3 times a night to hold her hip in place and get her into a spot that was comfortable during these periods.  Opioids were generally ineffective for her, and NSAID’s weren’t allowed because of bleeding danger plus the risk to her kidney.  Thankfully, while the Cancer spread through her body we were able to control it in the bone marrow more or less so these periods were not as often as some other symptoms.

Needles on the other hand were not her friend.  She had three medical port procedures done during her time fighting Cancer so that she wouldn’t have to be pricked with a needle as often.  She had very small veins and often anytime the port could not be used, she would have to take a needle in an arm that was worn down because of years of Cancer treatment.  The collapsed vein would bruise badly and take weeks to heal.  She especially hated this.

During the initial stages of her treatment, chemo drugs one time leaked into the muscle tissue in her arm, damaging the muscle tissue and veins rendering that arm useless for taking drugs via needle or IV.  This was a very painful chemical burn.  It never healed back the same way, but it would cause the other arm to have to take ALL of the needles for 7 years.  Even with a medical port you still need to get stuck with needles a lot.

During the later stages, Cancer had attacked her spine and neck and hip not through bone marrow, but through tumors pressing against nerves.  She was at risk of paralysis on two separate occasions.  The complications of having these nerves compressed caused both weakness in her legs as well as discomfort.  Narrow, targeted radiation was used to temper these problems.  Radiation was mild by our standards given what she went through.

Bone marrow biopsies were their own special level of hell for her.  It involves a very long needle that applies a Novocaine type of sedative to numb the local area.  They then take a thicker, larger needle and turn and dig into your hip like a manual drill.  The bone cannot be numbed, so you feel this metal object drilling into your bone.  Pressure is what they say it will feel like.  She said it felt like torture.  They dig through the hard part into your bone marrow and they take both what they call a “core sample” and they take actual bone marrow.  The bruising from this takes about a week to heal and it leaves a little scar “dot” above your ass cheek that fades but doesn’t go away.

Humiliation

As she was a Cancer patient progressing thru the later stages of the disease, she had to deal with a number of personal humiliations.

For instance, typically many people will see you naked as doctors and nurses need to examine you.  Being sick and weak meant occasional throwing up, or having to use a commode instead of a toilet, or needing to have a catheter inserted.

As it progressed, she lost some form of control and required assistance for sensitive matters.  She could not take care of herself while in the hospital.   Occasionally you got medical personnel that should have been truck drivers instead for all of the sensitivity they displayed.  I took over when she felt she was not getting the attention she needed.  She didn’t want me to see her like this, but she needed someone she trusted and I was always there.  Bathroom, showering, wiping, or even simply hair brushing all becomes vital parts of comfort care.

During the stem cell transplant procedure, her immune system was intentionally destroyed only to have it rebuilt over 6-8 weeks in isolation in an effort to put in a new immune system that might kill the cancer.  One of her sisters was a donor and had to go through a small procedure as well.  During this 6 weeks she was in isolation with only the internet and a TV and one visitor (me) as a link to the outside world.  A world that if she walked into without taking precautions she would risk certain death.

Her estrogen production was damaged by this stem cell transplant and this greatly complicated intimacy.  She entered early menopause.  Estrogen pills were prescribed.  These pills are not taken orally.  Still, physical complications greatly reduced her ability to feel the way she was prior to the procedure.  In additional to the physical challenges, both her and I developed mental anxiety.  She was afraid she would get injured and thus was unable to relax which in turn fed into my fear of injuring her.

Life-threatening Situations

At some point during cancer treatment, you will get an infection.  This is a generally accepted fact.  You will be hospitalized, and if you are like her you will have a skin rash.  Yet another opportunity for more people to see you naked when you don’t want them to.  This rash will take weeks to heal and leave discoloration on your skin.

She learned just how dangerous being allergic to medicine can be.  She required immediate steroids in order to prevent her wind pipe from closing.  These were heavy dose steroids that caused severe weight gain.

After the stem cell transplant she was on two particularly nasty drugs which are anti-rejection drugs.  They in combination with the steroids caused drug induced diabetes.

Other treatments made her so sick that you she lose just as much weight as the steroids made her gain and caused more body image issues that she had to cope with.

She developed an intestinal blockage that required a month of hospitalization and some very uncomfortable tubes to be shoved down her nose to suck the terrible waste building up in her body and causing her to throw up.

We gave up the ability to have children so that she could start the stem cell transplant ASAP.  Then, for good measure they later took her ovaries out completely because they appeared to be developing tumors of their own.

She was hospitalized I believe between 12 and 16 times in total.  She visited Sloan Kettering once or twice a week just about for 8 years.  I lost count honestly.  God help us when we had to go to the local hospital because it was an emergency.  Many local hospitals are so bad you are amazed they are allowed to operate at all.

Loss of Independence

As the disease progressed, she had to stop driving.  It became too dangerous for her to operate a car.  Later, she couldn’t even walk with me inside the grocery store because of fatigue and breathing issues.

She lost the ability to clean the house, do the dishes, do the laundry, cook, or fold laundry.  These were the tasks she did so she could feel like she was helping, and they too became too much.

She needed oxygen to breath, which reduced her ability to stay out for long periods of time as we had limited oxygen.  We would go to dinner twice a week to get out of the house before even that because too much for her.

Despite all of this, look at her smile!

This is what is so damn amazing.  Any smile I have had on my face in the past 6 years including my current Facebook picture has been faked.  I don’t know how to smile for a picture and feel natural anymore.  I look at my face and only a stoic frown feels natural.  I have resting bitch face at the best of times.  I live in search of happiness, but I haven’t found it.

But look at her smile.  She went through all of the above – only worse than I described.  Eight fucking years of that bullshit.  Can you tell from this picture?

That ability to find joy in spite of all of the misery she had to endure on a weekly, sometimes daily basis.  How can you not admire the toughness to know that tomorrow you are going to have 8 hours of waiting with intermittent periods of torture and look that beautiful and amazing.

She was always beautiful to me in mind and in spirit, this is without question.  Her physical looks were not lost on me, but her soul and her personality in combination with that was such a rare combination.  I was lucky she choose me to be her husband.  I hope she felt lucky to have me to protect and take care of her.

I always thought there would come a time when she would break on me and I would have to worry about leaving her alone.  There were enough drugs in the house that I was concerned.  I made her promise not to make me come home to a terrible sight; and to her credit she never intended for that to be the way her story ended.  But she too wanted what was best for me, and in turn also held me to the same promise after she was gone.

I promised that I would not wallow in self-pity and I would not harm myself.  I promised that I would work to dig myself out of this hole and figure out how to live the life we were denied.

As I cry my fucking eyes out and write this, I go back to that anger and that pain that I no longer bury.  It is a reminder that I have not yet met my promise to her.  And though I am not always perfect, every day I get up and I go deal with my day.  I carry this burden because in comparison to her I have the easy job. I fight to be happy because I promised her I would.

Not every widower gets to say goodbye, and many situations are not wrapped up in a nice and neat bow like mine are.  The only reason I am as far along as I am is because of the support of the groups I am in and thru hearing about their stories.  Those folks know who they are, but hearing and discussing their pain and burdens helps me carry mine.

If you know someone who has not had closure, they are in even worse shape than I am.  On top of their grief, they have to deal with the fact that their relationship was left with things unsaid and possibly very troubling issues left unresolved.

They might be left with children to care for who are going through the loss of a parent.  A widow/er has to attend to their child while dealing with their own breakdowns.  This greatly complicates even getting to where I am, much less to the point where we can open our hearts and find what to do or whom to be with for the remainder of our lives.

Friends and family mean well, but often they say very hurtful or insensitive things.  Telling the person what they should do, when they should do it, how long to wait and mourn before trying to live their life.  This is overbearing ignorance of the highest order, and it is almost always encountered on some level.  This isolates the widower and makes these feelings harder to deal with.

I dealt with many of these emotions as soon as 3 weeks after she died and continue to do so, but I am still learning to cope with them and it is a daily process.  During the early stages of my grief I wrote a small poem that I posted to my support group and wanted to share to close this article.  It didn’t have a title till tonight, in honor of my wife.8

Perseverance

One: the pain is crippling.

Two: Can’t breath; suffocating.

Three: Deep breaths control it

Four: Who the hell am I again?

Five: World is spinning fast.

Six: Hold it together, try again.

Seven: Pick yourself up, fight it.

Eight: Standing now, it hits again.

Fall down, do it all again.

Can’t quit, I promised.

Won’t quit, I’m stronger than this.

One day soon, I’ll rise again.

Been beaten, been bruised

Must make amends.

I am not ready to quit

Let’s get this over with.

Ring the bell, what do I fight next?

2 Comments

  1. This is similar to my story..my hubby fought cancer for 9 years and i went though this with him he passed Oct 1, 2017…

    Like

    1. I’m sorry for you loss, thanks for sharing.

      Like

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s