As a photographer, and self proclaimed artist (smile) my biggest coping mechanism has been taking pictures. Even as a child, I would stock up on disposable cameras and drive my grandparents crazy to get them developed for me.
I documented everything about my father's cancer journey in pictures. From the day of the diagnosis, to the emergency hospital stays, the treatment, the rehabilitation, the home hospice, and his death.
It's hard for me not to be emotional seeing these pictures. So many different thoughts and feelings that I experianced these last days. His last month of life.
My dad had gotten a cold that winter and it just would not go away. He was stubborn and would not let my sister or myself know just how bad he felt.
For a while his cold symptoms had even seemed to clear up. But by early spring he had developed a terrible cough again. A lump in his lymph nodes on his neck had began to form. He believed they were just swollen because of his cold, so he did not say anything to us.
My father was never the type of person to see a doctor. I was never fully sure if it was fear, or trying to avoid the financial burdens of medical care. He was always like this. As long as I can remember. Stubborn single father who always tried to put everyone's needs above his own.
When he finally let us know what was going on, his lump was as big as my fist. I was terrified, but I tried so very hard not to let it show as I knew it was my turn to be strong for my father.
We went to the ER and left with a recommendation for a cancer specialist. I remember before the official diagnosis feeling so hopeful. I had done a lot of reading online, and originally doctors believed he had hodgkin's lymphoma. A very scary cancer indeed, but it had really good survival statistics. We were ready to fight.
When my father went in for the biopsy he had a lot of trouble breathing and was admitted to the hospital. We waited a week for the results of that test. Rapid test showed he indeed had cancer, and doctors began to discuss chemotherapy with us. But we had to wait for the official diagnosis with the cancer type.
I was still very hopeful. I got to know his oncologist very well over this week. His nurse too. I was bugging them every day to see if they had results as the hospital we were in seemed to know nothing.
This week seemed to last a year. The wait. It was terrible.
I remember getting the call. The call. The life altering call. I was sitting in my friends car outside the hospital. I had been doing over night stays with my dad and was getting ready to go home, eat and shower. For whatever reason, the phone did not ring and went straight to voice mail. I played it on speaker. Right away I knew by my father's oncologist's tone that things were really bad. I had never heard sadness in a doctor's voice before. And he said he was sorry. So so sorry.
Up until this moment we never heard the words Lung Cancer. And I never in my life had heard of Extensive Staged Small Cell Lung Cancer. I knew nothing.
I later learned the 5-year relative survival rate for stage III SCLC is about 8%. SCLC that has spread to other parts of the body is often hard to treat. Stage IV SCLC has a relative 5-year survival rate of about 2%. My father discovered his in stage 4. Some doctors classify anything that has spread past the lungs as "Extensive Stage Small Cell Lung Cancer". It's a terminal cancer with very little treatment options.
I hid in the tiny bathroom of my dad's hospital room, I sat on the floor and I cried. I punched the sink. I felt like I was going to throw up. But I got up, looked in the mirror and said "get it together, Lopez... get it together, Taylor." Wiped my tears away, and went back to sit with my dad.
We agreed to do Chemotherapy to shrink the tumors to help with breathing and extend quality of life. We learned that this would not be a cure, and that they could not even properly give him a true estimate of time. Just that if we didn't do the chemotherapy, it would be very soon.
After chemotherapy, my father almost seemed to be getting better. His growths did decrease in size. And we were all feeling hopeful. We were told perhaps a hospice would be a great option for us. I don't think anybody was ready to hear that.
We were moved to a recovery room on the top floor. It was bigger, private and had a view.
The chemotherapy caused huge painful blisters all over my father's legs. A rare side effect. Something we were not ready for and would continue to worsen and grow until the end.
We were warned about his chances of pneumonia and infection. But were told to remain positive.
He went from the hospital into a rehabilitation center for a while to learn to use a walker and adjust to his new life. Things seemed great at first, but then my dad started to feel really sick.
That's when the ground was ripped from beneath our feet. Our worst fears had came true and my dad had developed pneumonia.
He was tired. He didn't want to fight anymore and asked me to call a hospice so he could come home. He hadn't been home for nearly a month. I think that in part made him want to stop fighting faster. He just wanted to come home. And decided against more hospital stays to treat the pneumonia.
He lived exactly one week from the time he came home from the rehabilitation center.
I have a long post about the spiritual experiences I had during the last week of my dad's life, and I will link it here: (Saying Goodbye To My Father; A Lesson In Faith) https://www.sugarygiggles.com/blog/saying-goodbye-to-my-father-a-lesson-in-faith
We had an amazing hospice team that I will forever be thankful for. I am not sure I could have done it without their amazing help and resources.
My father died at home surrounded by people he loved. I wish that we had more time, and that things would have went differently. I remember at one point in the hospital him telling me not to worry, because he was not ready to go yet either.
Not a day goes by that I don't miss him and that I don't think about him. Grief is truly a journey that we will go on forever.
I shared a lot of these images before in a collection, but I did not offer any real context to them. I simply said "my father's cancer journey in pictures". That's it. I really can't believe it has taken me 2 years to make this post. To clarify what all these images mean.
The endless medications, the breathing machines, the hospital stays... all of it. Even now, I feel like I have not put enough weight into my words and that I could do better.
I am posting this to let others going through similar know that they are not alone. That their feelings and emotions are valid. I don't think anybody can fully understand what it is like to have someone you love diagnosed with a terminal disease. Knowing that they are going to die.
We all need to be kinder and gentler to each other. We only get one life. And your time on this Earth is precious.
I wanted to share the story of my journey from atheist to believer. My mind changed based because of several experiences I had with my father the last week of his life...
My father found out her had terminal Lung Cancer (extensive stage small cell with mets in both lungs, neck lymph nodes, and later found out several in his brain) in late April. In mid May we tried Chemotherapy. Our intentions were not to cure, but to shrink the cancer a bit to allow easier breathing and possibly give him some more time with us. We also could have went with hospice then and there. (The choice to not do hospice then still bothers me. But I had to let him do what he felt was best for him.)
At first things seemed well. He handled the chemo like a boss. Didn't feel too tired.. things seemed great. He was happy and confident he made the right choice. Around day 5, something drastically changed. He got huge blisters all over his legs and feet. It was a rare reaction to the chemo...
As the days passed his blisters were just getting worse and worse which made walking very difficult for him. He got transferred to a rehab center to help him learn to use his walker. Before the Chemo he was able to walk around... but after that first week, he would never be able to walk on his own again.
He was in the rehab center only about a week before we got the terrible news that he had contracted pneumonia. At this point my father had been in the hospital and rehab a combined total of 27 days. He was tired. He refused antibiotics and had me call the hospice.
We called hospice on a Tuesday am. They had everything set up in my home by Wednesday and he came home that evening.
It was really weird because at first, he was almost himself. Granted he needed help walking around, using the bathroom etc..but he had this HUGE burst of life and energy. And all he wanted to do was talk to me. About life, his childhood... my childhood. The circumstances were not the greatest... but I never felt so close to him.
I asked my father several times over this whole thing if he thought we would see each other again and each time he would say no. He told me that if it made me feel better to pray, I should do it... but it meant nothing. Sigh... I still asked. It was like in my mind, even as a non believer, if he could believe, then I knew I could... but it didn't happen.
That Saturday my dad's best friend came in from NYC. They got to spend time together and say some goodbyes. It was almost like my father was waiting for him because that is where things got bad. After my dad's friend left, my dad was in a lot of pain. He just could not get comfortable... and he hardly slept.
The following morning, Sunday he started to not know where he was. He was able to recognize the kids and I, but he thought we were on a boat and heading to an island. He kept telling us we had to be careful because the crew couldn't be trusted. Both my dad and I were on less than 1 hour sleep. It was pretty brutal.
Throughout all this he was still letting me help him walk, eat his meals, and use the bathroom. The hospice suggested a sleeping pill. He took it no problem. My bedroom was next to his... and when he finally went to sleep, so did I...
I remember it was around 12am when I felt really warm. I can not explain it... almost like someone put blankets from the dryer on me. So I sat up, and standing in the hall without his walker or help was my dad. I sprang up, yelled for my husband and literally caught my father before he could fall. My husband helped my dad to the chair and I laid on the floor bawling my eyes out. I felt so guilty for failing because I didn't hear him get up.
At this point my father no longer remembered that he had lung cancer. He didn't understand why he was so weak he could not walk. I asked the hospice nurse and the doctor on call if they thought he would come back to us and that he would remember where he was. They told me with the size of the mets on his brain and the infection, I am lucky he still knows who I am.
The hospice brought me a baby monitor. And my husband, oldest son, and I all took turns sleeping in shifts. At around 7 pm my dad was very upset. (This was Monday night). He told me he would be to the island soon, but he had to figure out the numbers first so we could be safe. I had no idea what any of this meant, but he asked for pen and paper. I gave it to him and he did what looked like some math and wrote out some numbers.
We gave him another sleeping pill, and my son fell asleep in the chair next to him. My husband and I were awake in the room next to him. We had the baby moniter, and were going to try and do sleeping in shifts.. but he (my husband) had what we believed to be a minor case of food poisoning. So I was between helping my dad and helping him as well.
I don't remember the exact time, I want to say it was roughly 2am but I head a strange sound on the moniter. Like someone going through a drawer. I called out to my son, he didnt answer. So I walked to the bedroom and as soon as I got to the doorway, I see my dad take a lighter to his oxygen tube. HUGE rush of flames as I instinctually pulled the plug to his oxygen machine. My husband ran to our son as I went to aide my dad.
Somehow he remembered a stash of cigs and where he hid his lighter. It was his bedroom and I honestly never thought to hide things. He had quit smoking 2 months ago and had been doing great at it. To this day I still blame myself.
He had some burns and the hospice told us that we should call an ambulance despite my father's wishes. When we were in the hospital, he started to forget who I was... or anything that was going on. The ER doctor told me that I could keep him there. That dealing with a dying person with dementia is hard for professional care takers emotionally and that he could not imagine what it was doing to me and my family.. I thanked him, but said I would please like to take my dad home... and a few hours later, I did.
All afternoon I sat with him. He randomly yelled... cursed. Talked more about getting to the island...telling us we were lying, he was never sick. He did not even remember the fire.
He finally fell asleep and I just broke down. I prayed..... for the first time in roughly 15 years
I just kept asking god.. I said whoever is listening... I know his body is destroyed. I know it. And I know that he can not be healed. I know it's his time... I know you have to take him.. But PLEASE...not like this. Please god... whoever is up there. Let his soul say goodbye to us. Please. Let us have him back. Please give us our goodbyes. Please god. I never ask you anything. Please give me this. Even if just a day...
This was Tuesday night.... I fell asleep in bed next to him. First time sleeping since Saturday really... I heard a voice..
"Maggie is Robbie ok.."
(Robbie is my son)
I thought it was my husband, and I started to reply and then the voice said..
"I don't know why I tried to smoke that last cigarate, I am sorry. Please tell me I didn't hurt Robbie..."
It was my dad!!!!
I jumped up and said Robbie is fine! We are all fine. Do you know where you are? He looked at me confused and said I am at home?
He remembered everything! The cancer, the fire, being on hospice etc. He did not remember telling me he was on a boat, or that he was going to an island. And when I showed him the paper with the numbers, he had no idea what they meant.
The next day we even had a laugh over the whole thing. It was incredible. Like his mind never left us. We had an amazing day.. but that evening I started to notice he was getting weaker. He didn't want to eat, and told the nurse he did not want to wear his oxygen mask.
I told my husband... I knew... I knew it was going to be soon. Early Thursday am the hospice nurse told me she didn't think he had more than a few hours left. I put some music on for him. And he told us he loved us all. He told my husband to watch over his daughters, and protect his grandkids. He told Robbie he had many regrets, and there was still so much he wanted to tell me. We told him we loved him dearly and I know he loved me. And that we would all be ok.
Just before 11am he took his last breath in my arms. And I will never forget when they took his body from my home, soon as he was in the car it poured. Pouring rain and thunder.
Next 3 days were a blur.. I didn't leave my bedroom. The hospice came to get everything quickly. I asked not to watch. When I finally did go back down stairs, the first thing I saw was the paper with the numbers on it....and that is where it hit me...
I felt the warm again. Just like the night I woke up and stopped my dad from falling...
Then I thought about how tired I was the night of the fire. But my husband was ill... so we were both awake...
Then I remembered the prayer. My prayers were answered. NO ONE can tell me otherwise. I was told he wouldn't remember me again, but he remembered everything. All of us. He got to say goodbye... and so did we.
I still have no idea if the numbers actually meant anything, but I took pictures to remember. I also often wonder if the island was were his soul was going and the "crew" who was hostile to him were his fears of death.... I hope some day to understand.
But because of this, I try to look for signs everywhere. I have faith that there is a life after this one and that spirits are all around us. Finally working up the courage to write this whole story up is my Father's day gift to my dad. It has taken me two years to do this, but I feel much better after telling it.
I continue to struggle with not having you in my life anymore. We're coming up on two years since you've been gone, but lately it feels like day too...not year two. I worry that I am not getting better. Sometimes I fear that I will never get better.
I find myself angry a lot. At myself, at the world. At everyone who can get up in the morning and live their lives. I am so livid that nothing feels the same. Like the colors around me. The greens in the grass, the golden oranges in pinks in a sunset. They don't look the same to me. They look off... like when I didn't set my apature properly. Like I am looking at a world with not enough light.
I am haunted by the things that were not said. Before you died.. the morning you passed you told Robbie there was still so much you wanted to tell me and it kills me that I will never know.
I am not the most loving person in the way of hugs or physical touch. And I wish, as an adult I would have hugged you more. I wish I could have given you more actions than words. And you know what I think about? Holding your hand as you passed and the last time I did that before that day. I think I was 12 or 13... you grabbed my hand to cross the street and I remember thinking oh god what if someone from school sees me. I feel guilty now for thinking that.
I am a mess of guilt and burdens that I know are not exactly mine to bare but it doesn't stop me from feeling them all. Knowing things were not my fault doesn't help me sleep at night.
We are soon entering the 3rd month of 2018. Tavo and I are faced with a life changing decision and I have no idea what to do. We are so very lost and I desperately need your wisdom. I feel like you are the only one who could have lead us in the right direction. Honestly, dad? My life has been a string of choices that haven't always been in my best interest since you passed. I find it so hard to even think about the direction my life should go as to me... my whole entire world has stopped moving.
I guess... here is some good news. I have reached back into therapy. That is where this letter is coming from. I am trying to deal with my PTSD in a constructive way. This letter. I know you will never ever read it, but maybe some day someone will come across it. Maybe it will help them.
I love and miss you. I hope there is more for you. I hope in some way you are still you and you are happy. I love you very much and I think about you every day. I know if I could be half the person you were my kids will be ok.
I will continue to write to you. And I hope that some day these letters won't be so sad.
I get a little tired of people who assume that just because you have kids, you are automatically completely uncool, and that all your time is spent wiping babies from head to toe, giving spit baths, criticizing their every move, volunteering for PTA, blogging in your spare time, clipping coupons before crock potting a pot roast, ironing the clothes, bleaching the whites, mopping the floors, harvesting your eggs, sewing for your etsy shop, scrapbooking the little things, taking pictures of everything they do, saving for college, reading Dr. Suess, socializing at the bus stop, sweeping the floor, laughing over coffee with your jogging stroller, wearing your birkenstocks and listening to Baby Einstein.
Just because I DO THESE THINGS OCCASIONALLY.
Does not mean for one second that sometimes I don’t just want to be a kick ass girl with streaks in her hair, a ring in her nose, a tattoo on her arm, concert tickets in her purse, vodka in her fridge, a leather mini-skirt in her closet, her best single friends and a standing reservation for Las Vegas once a year with a don’t ask don’t tell policy, and the desire to just once be seen as more than the mother of 5 kids. Sometimes I just want to be seen as a “Maggie”. A “Maggie” with an extremely adorable set of children… (I joke, but sometimes it's hard to over come labels. )