Dealing With Grief: Waiting For Opdivo

Dealing With Grief
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New Year’s Eve. December 31, 2014.  His last birthday on planet Earth,  January 1, 2015. Turning 71.

On the third anniversary of my husband’s death, June 27, 2018,  I decided to publish this article which I started writing two and a half years ago. I had been unable to finish it.  I was moving on with my life and didn’t want to relive these very sad and traumatic moments.  Every time I went back to my draft, my mind went blank.  All those years of struggle and later grief came back to haunt me.  I remember my mother telling me after my husband’s death:  “Annette, you are under a deep depression. You should honestly see a doctor.” and my answer was: “No Mom, it’s not depression, it’s just deep rooted sorrow. It’s a very strong feeling of loss.  I will be okay.”

So no.  I was not ready to finish it.

I am ready now.

I worked in the advertising industry for many years and my last job was as Commercial Director for Televisa Publishing + Digital Puerto Rico. A company that distributed in Puerto Rico the Spanish versions of Cosmopolitan, Good Housekeeping, National Geographic, Women’sHealth, Men’s Health etc. The Puerto Rican magazine Caras and the very popular latin magazine Vanidades.  Not only did the sales department report to me but also marketing, promotions and the special projects department.  I also managed social media for Cosmopolitan, Vanidades and BuenHogar (Good Housekeeping).  I was extremely happy and at the peak of my career.

While visiting one of my very good clients who managed advertising for an important pharmaceutical company about a year prior to my husband’s death, she talked to me about a very promising drug called Opdivo (nivolumab)  which was considered a miracle drug for prolonging life to melanoma type cancer patients.

She went on to tell me that it was now being tested on patients with metastatic non small cell  lung cancer (NSCLC) but back then hadn’t yet received the approval from the FDA to treat lung cancer patients . I made extensive research on the drug which is actually immunotherapy which stimulates a person’s own immune system to recognize and destroy cancer cells more effectively. Immunotherapy would be used to treat some forms of non-small cell lung cancer (NSCLC).  It was supposed to be very effective in fighting metastatic cancer, which has spread from the original tumor to other areas.

 It so happens that finally around March 2015 Opdivo, was approved by the FDA to treat people with and advanced lung cancer:  Squamous non-small cell lung cancer that has grown after they received platinum-based chemotherapy.

 So as soon as I was able to and after hearing about the approval, (because Rafi was always in and out of a hospital in Puerto Rico either with dehydration,  chemotherapy side effects etc.), I traveled with him on June 2015 to Cleveland Clinic in Weston, Florida.   I took  a nurse along with me who had been coming to my house for the last 4 months to help me with his bathing, medications and would administer intravenous fluids to him  due to the fact that he refused to drink water or any other liquid for that matter and would easily become dehydrated.  Couldn’t walk.  Was  6’1″ tall and I couldn’t move him by myself anymore.

 Worst trip ever. We arrived at Weston Florida with him and on our way to the hospital we had to place him lying down on the back seat of the car because he couldn’t sit by himself anymore. He couldn’t walk and he his body was aching all over.

 Nobody would help us get him out of the car when we arrived at the hospital. They wouldn’t because of liability issues. This was mind boggling to me. A hospital and they won’t help you get a patient out of the car and help you move him on to a wheelchair?Where has liability taken us?

So being ultra careful we struggled but finally got him out of the car, placed him in a wheelchair and took him into the clinic.  They did an MRI on him.

The results of the MRI were back on the following day and we took him to his first appointment with a neurologist, who was a true angel.  He was the one to give him the news.  His cancer had spread to his bones, to both of his lungs, spinal chord, stomach and I don’t remember what other organs were compromised.  Very bad news. We were all devastated.

This is what happened on that appointment. If you already read this story which I posted a couple of years ago you may skip it. If  you would like to read it, here is the link:

https://wordpress.com/post/annettevaillant.com/2814

After the appointment we took him downstairs to fill out some forms.  He sat in his wheelchair next to the nurse while I stood in line.  After I filled out all the forms, I walked over to him and he began to cry. I had NEVER seen Rafi cry. I grabbed  him by the hand and told him, with that positive attitude that I always try to portray and remembering the movie Sound of Music and the song: Whenever I feel afraid I hold my head erect and whistle a happy tune so no one will suspect I’m afraid: “Rafi  are you crying?  No way!   You are going to be cured. You are going to start your Opdivo treatment and you will be cured! Please trust me.  We will get over this. Trust me!”

He looked at me and smiled.

Last trip to Weston.  June 2015.  He loved me to take him to House of Pancakes.  Strawberry milkshake was his favorite.

We had been waiting for months for the FDA to approve this “miracle drug” for the treatment of lung cancer but Rafi didn’t fit into the protocol. Here was the catch: My husband had non-small cell lung cancer, which had metastasized and he had also received platinum-based chemotherapy, but  his lung cancer was not “squamous” which is a histological subtype of non-small cell lung cancer.  He was not a candidate as he did not fit into the protocol that was needed for the approval of the administration of Opdivo.  Even so, his oncologist at Cleveland Clinic told me he would work it out. That he would get the necessary paperwork and approval and proceed to administer Opdivo to him. That he was working already with other patients who didn’t fit into that precise protocol.  But he needed to get the approval first.  So back to the hotel we went.

While staying at Weston, I constantly went to the doctors office. Called endlessly to see if he had been approved. Rafi’s health deteriorating rapidly and his pain was getting worst. They even had to put him on medical Cannabis to ease his pain.

Fortunately his family started arriving. His daughter came over to stay with her dad, whom she adored, and so that I could travel to PR because both my license and passport had expired and if I didn’t renew them I wouldn’t be able to travel anymore.

So off I flew back to Puerto Rico leaving Rafi with his daughter and the nurse.

Two days later his daughter called me at midnight telling me Rafi was at the intensive care unit in Cleveland Clinic. I got on the first plane to Fort Lauderdale, got on a cab to Weston the next morning and so did his other three sons.  He was taken to the intensive care unit at Cleveland Clinic due to the fact that while he was being administered his food in  bed he had thrown up and this material had entered his lung producing an aspiration pneumonia.

I was devastated.  When I got to the intensive care unit I found him eyes closed and tubes all over.  As I approached him, he opened his eyes looked at me and smiled with that so recognizable loving smile he always gave me when he saw me. He was so happy I was there.

I cursed the moment I had left him behind. I cursed my inclination to procrastinate. I cursed the fact that I had no one to blame but myself because it was me who should have been there. We had become inseparables. He had become my son.  I could feel his pains, I knew when he was going to pass out, throw up, wet himself.  I could sense all his normal bodily functions that become malfunctions as you age and become ill. After being with him for so long I knew, I sensed him, I felt him.

Many times in the middle of the night I would instinctively jump out of bed to lift him up when I felt he was going to throw up. But no, I wasn’t there. I was renewing my passport and license which I should never have allowed to expire. I had no one to blame but myself.

Blame.  That’s all I felt for a long, very long time after he passed away.

My life with Rafi had become a full time job after I lost my job in December 31, 2014 due to the closing of the company. Sales had dropped because of the economic recession, the growing internet market which took over print and I also have to add that my priority had not been sales or my job anymore, my priority in life had been taking care of Rafi. Taking him to his doctor’s appointments, coordinating his physical therapies, making him smoothies (which was the only food he tolerated), administering his drugs, taking him out on his wheelchair so that he wouldn’t get depressed but most important of all, making sure he would hold on until Opdivo would be approved for lung cancer patients.

That night we left him with the nurse at the intensive care unit and went to the hotel. They were trying to deal with his aspiration pneumonia and he was improving.

The following day a doctor who apparently had an important position in the intensive care unit, which I later labeled “The Angel of Death”, came over to talk to us and tell us that we should not prolong his life any longer. “What?” I said. “But we are waiting for Opdivo!” “That’s only a palliative treatment”, she answered. “This will not cure him.

“No! I replied. “We’ve been waiting for Opdivo for almost a year now. It’s not a palliative treatment. I KNOW. I’ve been doing research on it for quite some time!”

For the next three days I stayed with him in his intensive care unit room, sleeping on a chair, never went back to the hotel, bathed or changed my clothes. I was not going to let anyone take him off his ventilator.

There was this nurse who was an amazing , caring human being, that would come during the night shift and told me we would get him out of this. “Of course we will I said, We need to.  We have to get him out of the intensive care unit so that he can begin his treatment!”  I waited for her to come each night. We would talk endlessly.  She would tell me I needed to get some sleep. That she didn’t want to take care of two patients in the same room.

But the “Angel of Death” came every day. Asking us to please  put him out of his misery. I truly came to the point of despising her. It had to be my decision. I was the wife. I had to give the okay for the doctors to take him out of his life support system.

For 3 days I struggled, cried, prayed and asked God for mercy. Couldn’t sleep. Watched him breathing while being under an induced coma. How can I kill my own husband?  How can I make the decision of ending the life of the man I love, who smiled at me oh so lovingly just two days ago and for heaven’s sake we were waiting for Opdivo!!!

A Cuban Dr. who was extremely supportive also told me they would cure his pneumonia. That he was slowly but surely improving.

Then after three days of family reunions, talks with the “Angel of Death” who was there every single day in the process of convincing me to make the right decision because his cancer had spread to his bones, spine, stomach, other lung, etc. That he would never again enjoy or have any good quality of life.  She told us that people who are very close to sick people, who have become their caregivers,  don’t notice the deterioration process of their loved ones.

And that’s when it hit me.

She was right.  Rafi was never going to be my Rafi again. He was never going to be able to dance. (He was a fantastic dancer)  Sing “My Way” (His favorite song).  Hug me, kiss me. Travel the world together. Go out to dinner.  Enjoy his whisky. But worst of all, he was never going to recover.  His pains would not cease.  He would be living a miserable life and he would eventually and undoubtedly die.  He deserved a dignified death as he had lived a dignified life.

Actually, I don’t know when I had become so utterly blind.   Cancer was actually doing what cancer does best, taking over mercilessly.  Killing human beings and in the process killing itself. Growing undetected. Fooling our inmune system. Taking lives. Separating loved ones. Taking over children before they have a chance to become productive adults.

That silent inner monster. Enjoying our pain with mocking eyes.

I called my oldest son, Carlos, who lives in Miami.  My son is like an old soul. When he was about to receive his first communion the lady who was preparing the children for Reconciliation told me this boy was special. That he had a direct line with God. Carlos is very keen and very objective at making decisions and very supportive in difficult times. Reminds me so much of my father…

I told him that Rafi’s family wanted to end this. That they didn’t want to see his father suffer any longer but that they were waiting for and respecting my final decision.  But I also told Carlos that I had decided I was not going to make that decision.  Rafi had to be taken out of the intensive care unit as soon as he recovered from his pneumonia.

This was my decision.

He said “Mom, do as they say. If it were my Dad I would like to have the opportunity of making that last and final decision.”

My son drove from Miami to Weston that same day. I waited until he arrived and only then did I agree for the doctors to take Rafi off his ventilator.

What came after this was truly appalling.

They took the tubes out. He struggled for air for two and a half hours. The sound of the death rattle was dreadful.  It was the most shocking trial I have ever gone through. And believe me I  survived breast cancer with 6 months of chemotherapy,  3 months of radiation, took care of my Dad who died of pancreatic cancer.  I’ve been there.  But this was way beyond anything I had  experienced in life. While no one is ever fully prepared for the imminent death of a loved one even when it is expected, as was the case, this was way beyond anything I thought I could have ever dealt with.  I went through feelings of sadness, anger, fear, guilt, anxiety.  Two of his sons and his daughter where there with me. His youngest son was playing his father’s favorite music on his iPad, crying through the ordeal.  His daughter truly amazed me with her total control of the situation.

My son and Rafi’s oldest son waited outside.

I spoke to him constantly because I knew they can still hear you. I prayed. I asked Rafi to please follow the light. We will all be okay. Your wife, I told him, (she had died in 1999, five years before I met him) is here for you,  your father, your uncle. Follow the light my love. I spoke to him for two and a half hours. Non stop.

Finally, he let out a final gurgle and passed away.  I immediately turned my head up to the ceiling, I KNEW he was there looking at all of us from above and said: “My dear and loving Rafi, I know you are here watching us. We love you. We will be okay. You don’t have to suffer anymore. You can walk again, dance sing your favorite song together with your dear old Frankie.”

I was totally devastated. How I had loved this man.  My friend,  my lover, who later became my son. How I cherished the moments together through his pain and sickness.

How I truly missed him.

After his death, my son took me back with him to Miami.  Rafi’s sons would take care of all the details and transport his body to Puerto Rico.

For days I cried, screamed while driving alone in my car.

I have had family members die but I have never felt them so close as I felt Rafi after he passed away. I could “feel” him. I could sense him in my room. I KNEW he was there. Taking care of me and trying to ease my pain.

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This was us.

One day while driving my car I started to yell at him.  Asking him to give me a sign. That I needed know where he was.   That he had left me so all alone .

All of the sudden a song starts playing from my iTunes: Just Remember I Love You. A song from the 70’s by the band Firewall. These are the lyrics to it:

Just Remember I Love You”

When it all goes crazy and the thrill is gone
The days get rainy and the nights get long

When you get that feelin’ you were born to lose
Staring at your ceiling thinkin’ of your blues

When there’s so much trouble that you wanna cry
The world has crumbled and you don’t know why
When your hopes are fading and they can’t be found
Dreams have left you waiting, friends have let you down

Just remember I love you
And it’ll be alright
Just remember I love you
More than I can say
Maybe then your blues will fade away

When you need a lover and you’re down so low
Start to wonder, but you never know
When it feels like sorrow is your only friend
Knowing that tomorrow you’ll feel this way again

When the blues come callin’ at the break of dawn
Rain keeps fallin’, but the rainbow’s gone
When you feel like crying but the tears won’t come
When your dreams are dyin’, when you’re on the run

Just remember I love you
And it’ll be alright
Just remember I love you
More than I can say
Just remember I love you
And it’ll be alright
It’ll be alright
It’ll be alright
It’ll be alright

When I was hearing this unconditional love song I started to cry and thank him when all of the sudden I listen again to the fourth stanza:

When you need a lover and you’re down so low
Start to wonder, but you never know
When it feels like sorrow is your only friend
Knowing that tomorrow you’ll feel this way again

This is when I realized that it was truly Rafi who was speaking to me from another level. Rafi was quite a conservative man (a little on the jealous side) who would have never wished, ever, that I would meet someone new. And here he was telling me when you need a lover and you’re down so low…just remember I love you.

Someone who knows about life after death, told me I had to “let go”.  Rafi would not make it to another level if I didn’t. He could not bear watching me suffer. That it was better for his soul for me to let go. So I slowly and sadly started talking to him and telling him to leave. That I would be okay.

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Our Wedding Day.  November 24, 2006.

Three years have gone by today.

Yes, I have thought I found love again. I still feel young, active, healthy.  I know I have a lot to give and deserve and am willing to give myself another chance.

But the love I felt for Rafi. That unconditional love which makes you want to clean, nourish, touch his wounds and be there breathing his last breath, that love, was buried with him forever.

Forever he will hold a place in my life, my mind and my soul.

And if we meet again or not, it really doesn’t matter. He was a very important part of my life on Earth.  He left my soul full of endearment, tenderness and love.

For that, I will be eternally grateful.

I loved and was loved unconditionally.

Copyright © 2015 UVA Investment, Corp. All rights reserved.

Spanish Airs

Beauty Fashion & Survival

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From Stella Nolasco’s Spring/Summer Fashion Show.  I love this particular dress because it does have a Spanish air to it. Sophisticated yet totally “décontracté”.

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Dress:  Stella Nolasco; Makeup & Hair: Alfredo Monterola; Photos: Raquel Pérez-Puig

Location: LL

Copyright © 2015 UVA Investment, Corp. All rights reserved.

Blue as in Happy

Beauty Fashion & Survival

 

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Dress: Stella Nolasco Spring/Summer Collection; Makeup & Hair: Alfredo Monterola; Photo: Raquel Pérez Puig; Location: LL

I love the color blue.  It brings me peace so I wear it a lot.  I think it blends perfectly with most skin colors.  Blue as in sky, yes.  But also our crystalline waters in the Caribbean are blue. It strikes me as funny when people say they feel “blue” when they’re feeling down.  I’m blue when I feel relaxed, when I’m in love, when I’m in complete  harmony with the universe.  So blue it is for me. Blue as in peaceful. Blue as in calm. Blue as in happy.

I wish you blue.

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Copyright © 2015 UVA Investment, Corp. All rights reserved.

Blessed

Beauty Fashion & Survival
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Dress: Stella Nolasco; Makeup & Hair: Alfredo Monterola; Raquel Pérez-Puig; Location: LL

A while ago I was interviewed by a very good friend and ex-co-worker and she asked me if life had been good to me.  “Life is life”, I answered, “and I have decided to make it good.”

On a day like today,  I want to give thanks for all my blessings.  Last year, I was at my extended American family’s home celebrating Thanksgiving feeling quite miserable.  It was my first Thanksgiving without my husband who had passed away only five months earlier after battling disease after disease for three consecutive years.  Ten years ago today, we had gotten married and had promised each other to be together “Till death do us part.”

But life is so fascinating and oh so unexpected if you only stop to contemplate all that surrounds you.  If you realize that we find ourselves in a temporary place and that we have the responsibility  to make the best of it.  This Thanksgiving I am happy because I decided to make life a happy place.  I took charge of my life, as I always do.

At this very moment I am surrounded by family, health, was given the opportunity to  combine all my skills to create a community of women who inspire me and I’ve looked up to them for advice.  Women who also might feel lonely either because they are going through an empty nest syndrome, have lost a loved one, have been left by their significant other (and maybe it was his loss)  and have welcomed me into their hearts and  have made me part of their lives.

I am very blessed.

I know life is very unpredictable.  I have been there.  Tomorrow is tomorrow and I will deal with what comes my way then.  I want you to do the same.  But now, today,  I  give thanks to God and to the fact that I have been given this unique and magnificent opportunity to connect with so many people in such a positive manner.

May God bless you all and may you also be aware of all the beauty and blessings that surround you.

 Open your eyes, open them wide and let that lovely light shine in.

This is our opportunity. We only have one life.

Let’s make it a memorable one.

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 Copyright © 2015 UVA Investment, Corp. All rights reserved.

You’re not here…anymore.

Dealing With Grief

Foto RAFI Y YO

Suffering sucks.   But the desperate feeling of not being able to find a way out makes hurting even worse. That’s why I run away from it. I keep myself very busy so that I have absolutely no time to think and realize that my long time companion is not here and will never be here again. So all of the sudden when suffering strikes, I write. This is my way of coping and if I can be of help to someone who is going through something similar then, fortunately, my hurting serves a purpose.

Yes, I remember him so well. So very utterly handsome and elegant.  With his crisp cotton white shirts and black pants. Always a gentleman.

So I sit here today in front of my computer at our home, which he used to call his “Little Cave”,  that we had remodeled to our liking, left with memories in each and every corner. Exactly ten years ago this month, we got married promising each other eternal love.  Love which was fleeting.

When I’m not physically active, his presence falls upon me. Coco, Caña and Canela also miss him. He was their master.  Now they snuggle with me at night. I hated to have the dogs sleep with us, but he would always convince me to let them in our room. Now I’m the one who brings them in. They give me love and companionship as only dogs can.

No one could come into our apartment without Coco trying to bite them.  Now Coco has become a tremendously gentle dog.  He doesn’t have to protect his master who he sensed was so lacking in health.

We shared unforgettable moments together.  He was my husband, my lover, my friend.  Now I find myself in that hollow status, so lacking in feelings, I’m his “widow”.  This is my new reality and one that I will have to cope with for the rest of my time in this mystery called life.

But yes, I want to believe that we will someday all be part of a new world where we will all meet in solidarity. Until then, my dear Rafi, I write thoughts on my wall which probably only make sense to me. And with that, my dear, I am content.

Copyright © 2015 UVA Investment, Corp. All rights reserved.

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 Sufrir es feo. Pero la desesperación de no encontrarle salida a tu sufrimiento es peor. Por eso le huyo con todo. Me mantengo sumamente ocupada para no darme cuenta de que mi compañero de años no está y no va a estar nunca más. Porque ese pensamiento de “nunca más” me desespera.  De momento me agarra el dolor y ¿qué hago? Escribo. De esta manera me salgo de mi misma y quizás ayude a alguna que está pasando por lo mismo. Entonces mi sufrimiento agarra algún tipo de sentido.

Sí recuerdo a mi marido hoy. Tan pero tan buenmozo, tan elegante y caballeroso. Con su camisa blanca almidonada y su pantalón largo negro.  Hoy estoy en este, nuestro hogar, al cual él llamaba “La Cuevita” la cual remodelamos juntos a nuestra imagen y semejanza, y la cual él abandonó a destiempo dejándome llena de recuerdos en cada rincón.

Justamente este mes, hace diez años nos casamos y nos juramos amor eterno. Amor eterno que en esta vida fue demasiado fugaz.

Siento mucho su ausencia cuando no estoy activa. Coco, Caña y Canela lo extrañan también. Su amo era él. Y ahora se acurrucan a mi por las noches.

Yo odiaba dormir con los perros. Pero Rafi siempre buscaba la manera de convencerme para que los dejara dormir en nuestra habitación. Ahora los entro yo misma. Son mis tres compañeros y me dan mucho amor, y compañía. Como solo los perros lo pueden hacer.

No había quién entrara en mi casa que Coco no le tirara protegiendo a Rafi. Ahora Coco es un perro dócil que recibe con mucho cariño a mi familia e invitados. Sí, me cuida a mí, pero ya no se siente en la obligación de proteger a su amo, el cual Coco intuía carecía de salud.

Pasé muchas lindas etapas junto a Rafi. Amante, amiga, compañera y esposa. Ahora soy esa palabra tan hueca y carente de sentimientos su “viuda”,  la cual me niego a utilizar.

Esta es mi realidad y no voy a dejar que me tumbe. Lo quiero y lo extraño muchísimo, pero hay que seguir hacia adelante en este misterio que se llama vida.

“Hasta que la muerte nos separe”, así nos juramos. Y quizás, nos unamos algún día. Quiero pensar que está en un mundo mejor al cual llegaremos todos en unión y solidaridad. Hasta entonces, mi querido Rafi, serás sólo esto, una serie de palabras en mi muro que quizás solo a mí me hagan sentido. Y con esto, por ahora, me tiene que bastar.

Copyright © 2015 UVA Investment, Corp. Todos los derechos reservados.

On Love and Companionship

Family & Friends, Health

 “Till death do us part”

IMG_3087And so it shall be. Caring for a loved one through pain or misery can take a heavy toll on you. For the better. Those motherly feelings arise once again and you realize they were never meant to fade.

Copyright © 2015 UVA Investment, Corp. Todos los derechos reservados. 

Returning from Cleveland Clinic with my husband from his latest chemo session.

On Second Chance at Love

Love

IMG_3063When you thought you had to live the life you always knew. When you had not yet discovered your worthiness. Oh!, and maybe you thought it was too late. When you begin to love and respect yourself, there is always someone out there who notices…

Copyright © 2015 UVA Investment, Corp. Todos los derechos reservados. 

On Maturity

Beauty

10808611_742109292509987_1975806943_n-1Yes. You lose the innocence, the freshness, the texture of youth and try hopelessly to find it. Again and again. Until one day… Alas! You discover these qualities have undergone a transformation. They are now what you recognize in yourself as patience, acceptance and empathy. All these kings now live inside you.

Copyright © 2015 UVA Investment, Corp. Todos los derechos reservados. 

On Survival

Health

There are many types and forms of survival. Breast Cancer was one of mine. I met all my angels while on this path. I learned that you cannot walk alone; you must surrender. It’s an extremely humbling experience.

Copyright © 2015 UVA Investment, Corp. Todos los derechos reservados. 

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