I started this blog on New Years not knowing what it would bring. I lacked focus and after committing to this project for the new year, I wondered what I was getting myself into. I told myself that I would not write everyday, but as needed. Then my father got sick and sicker and sicker.
The week after I started my blog I took my Father for a PET Scan and it was determined that his newly found stomach lymphoma appeared to have also been in his small intestines. The following day, we went to meet with his oncologist who was willing to start treatment, but you could just tell by the look on his face, he was not overly optimistic. There was no way my father was strong enough to handle chemotherapy. One, maybe two sessions and that would have been the end of him. I told my father that he should think about getting a bit stronger first, but he did not want to wait. He has already missed three appointments with the oncologist because he was hospitalized 4 times in December- bowl obstructions, hepatic comas and variations of other issues he had going on. You see, my brother is getting married in September and while my father knew in September of last year, when the wedding was booked, that he would not be here a year from that time, he still wanted to fight and try.
The day after the oncologist consult where he set himself up with all the appointments to start his chemotherapy infusion, I drove him into Manhattan to see his doctor at Mount Sinai Hospital in the Liver Transplant Center. That visit brought even more discouraging news. You see, it had always been their policy that a patient be cancer free for 5 years before undergoing a transplant. The doctor, who my father absolutely adored, had to tell my father with tears in his eyes, that he was no longer viable for a transplant and therefore could not be treated in the clinic any longer. As a professional courtesy, the doctor agreed to monitor him in his other office, but there was not much he could do for him at that point. He had exhausted all medical measures and had to tell my father, and the rest of the family; that at the rate his liver was declining, his liver would not last the 5 years he was required to be cancer free. Chemo in his case might shut the liver down completely and with all the other medical issues he had going on, he was given a 20% survival rate.
On the way out of the doctors office, my father needed to stop in the bathroom before we headed back to Long Island. As I waited for him, I stood in the hallway and started crying. The doctor had in the best way he knew how, handed my father a death sentence and there was no turning back and no reversing it. I tried to be brave and not show my pain and sorrow, but you could see it all over my face. I drove home from Manhattan having a huge anxiety attack, fighting back the tears and with the thought that I would probably not have to be inconvenienced to take my father into the city too many more times.
At this point my father was weak and could not get around easily so we had a wheelchair in the car that we used for such occasions when a long walk was required. There was one part of the hospital that had a fairly large ramp and the first time I went to the city when my father was wheelchair bound, I ran down the ramp pushing him at a very high speed. He was saying "Slow down, there is a wall up ahead". And at the very last minute, I would slow down and then make the turn. He would comment to me how he thought I was going to crash him or make him fly out of the wheelchair. After we would turn the corner and he knew he was safe, I would say to him, "Come on, you know that was fun" and he would look up and say, "Actually it kind of was". On January 7, 2010 when I took him for his visit, this would be the last time I ran him down the ramp at a high speed. Sick people, doctors, serious people all around, and then there were the two of us running down the halls in a wheelchair at race car speeds. Like little kids smiling and laughing the entire way. And as I said, it would be the last time we acted like little kids together, only I did not know it at the time.
Less than a week later, my father started to get sicker, and sicker, and sicker. My father was to start his first Chemo infusion on January 14th. Originally it was scheduled for the 13th, but when we learned it was to be almost 7 hours long, we asked him to change it as it was my mother's birthday on the 13th. As that week started off, my father was not feeling well and as the days went on, he got worse and worse. It was apparent that he was far too weak and unstable to start the chemo, but he insisted on trying as it was his "last hope". My sister was to fly in on the 19th and asked if he could hold off just one more week, but my father refused. He was adamant that he get started right away "before he changed his mind and decided to die".
Somewhere around the 12th (a Tuesday), he was so ill and so unstable that he could not even stand on his own. He could not get comfortable for more than a moment at a time and he looked at me and said, "Maybe this week is not such a good week to start my chemo." "I may need to rethink this one.", he said. A wise decision on his part, but it did not matter, he never would have made it to that chemo appointment anyway. Somewhere in the wee hours of the morning Tuesday or technically Wednesday morning around 2am, I said enough is enough and I called an ambulance. As sick as he was, my father did not want to go to the hospital. You see, somewhere in the back of his mind, he knew he might not make it and I think he did not want to die in the hospital alone in the middle of the night. For weeks prior he had been making peace with God, asking questions about how to pray and how to get into Heaven. I think he knew and he was prepared, yet he did not want to die alone......and he didn't.
When we got him to the hospital, his heart rate was very rapid, then barely existent. His blood pressure was so faint, a mere 45/11 at some points and at others, even lower than that. His heart rate was up and then down. He was in pain, his kidney's were shutting down, his one lung had collapsed or was not working at first glance and he was starting to take on a very yellow color as jaundice from his failing liver was setting in. As the hours went on, they tried, but were keeping him comfortable and buying him hours at the best. He was in so much pain and as I watched as his blood pressure went to 23/9 and his eyes were rolling back in his head, I looked at my mother and said, "We can't do this to him anymore....all his organs are failing - he has too much wrong with him and we can't keep putting him through this."
The doctors wanted to know if he stopped breathing if we wanted them to put my father on a ventilator, and I know for certain that he did not want that. With tears welling up and feeling like the World's biggest piece of shit, I looked at my mother and said, "We have to sign the papers...we have to sign them, he can't do this anymore." My mother looked at me and said, "The DNR?" ...... It was as if all the life had been drained from my body. I could not speak, I could not breath- all I could do was nod my head "yes" and run out of the room hysterical. Complete strangers were coming up to me asking if I was OK and if they could get me anything but all I could do was say, "no thank you" and cry some more.
My sister lives in Las Vegas and I had called her late at night her time, and in the wee hours of morning my time to tell her that the doctors did not expect he was going to pull through until next week and if she could, she might want to consider catching a sooner flight out. Just as I had picked up the phone to go out of the room and call her, the phone rang. I answered hysterical crying to my sister saying, "What's wrong? Tell me what's wrong? What happened? Net- Tell me what is going on!" She thought it was too late and he was gone, but he wasn't- not yet anyway.
I explained the situation, told her we had to do it and that I felt like the World's biggest piece of shit. I told her that his kidneys had completely shut down, that his heart was erratic, his blood pressure barely existent and that his lungs were not functioning properly and he had trouble breathing. He was in pain, his skin was yellow and he was going into multi-organ failure. If we cured one issue, there were a million more and the odds were so stacked against him. The DNR needed to be signed, I did not want to and I felt as if I signed it, I would be condemning him to death, but he was suffering. I had watched him suffer for a long, long time, but never like this. From both ends of the phone, silence, then hysterical crying and disbelief. My sister told me to sign it- her own father-in-law was in the hospital, put on a vent, had kidney issues for a while and she knew just how painful it was. My sister told me to "sign the papers. You are not the one killing him, you are stopping his pain and he is suffering now."
My sister was working on getting a sooner flight but just in case, I snuck the phone into the ER and put my father on the phone with my sister so that they could at least speak one last time. My father, never an emotional man at all, got on the phone. I had to remove his oxygen mask and as he gasp for breath, he told my sister that he loved her, was proud of her and if he never saw her again that he would miss her. He then asked her to please not forget him when he was gone. I knew that it was his time, but prayed for two things- one that he hang on long enough for his children to see him one last time and two, that he not die that day- not before midnight because this is how my mother was spending her birthday.
As soon as I got off the phone with my sister, I immediately called my brother at work and told him he better leave work early because Dad was bad- real bad and I was not sure how much longer he had left. Should the toxins build up and he go into another hepatic coma, he needed to see his father one last time before it was too late. Moments later he arrived and shortly after that, my sister called back to say she had 2 hours to go home, pack and get to the airport. She found a sooner flight and she got in at 10:40pm. I told her I would get her, but prayed that she would make it in time.
The doctors ran more test, tried to find out the cause of the kidney failure and while my mother and I knew that it was a matter of days or hours, we let them do their tests to buy some time and make him comfortable and as stable as possible hoping my sister would made it off the plane in time.
My father was moved to the CCU of Saint Catherine's Hospital and although they have strict visiting hours, I think they understood the severity of the situation. As he had a private room, they allowed all family members in at all hours. There were 15 of us at one point and while they all came to pay their respects to my father and see him one last time, we also tried to make light of the situation and brought in a birthday cake for my mother. It was not the birthday I had envisioned for her and certainly not the birthday she had envisioned for herself, but it was the very least we could do.
As the hours went on, my father began having more difficulty breathing. He started to get nasty and was turning more and more yellow. I knew the toxins were building in his brain and it would not be long before a hepatic coma set in. He was in so much pain and his words began to slur and his voice got fainter and fainter. I thought if I told him my sister was on a plane that he would hang in there just a bit longer. He was trying to say something to me but I could not understand. I removed his oxygen mask and he said, "Give me some of the loopy stuff". He wanted morphine for the pain. I told my father that my sister was coming and to hold on and didn't he want to see her. I asked if he was in pain and he shook his head yes. I asked if it was in his abdomen which is what had been bothering him the last few days and he said, "Everywhere". Trying not to tear up, I explained that if they gave him something for the pain, it might make his heart stop and didn't he want to see his daughter one last time. I know that he did, but he was in so much pain that he said, "Make it stop".
My mother had actually just signed the DNR around this time. We explained to the medical staff that my sister was in flight and we did not want any heroic measures, but if they could keep him going just long enough for my sister to see him on last time. I told them he was in so much pain and once my sister got here and talked with him for a bit, could they make him comfortable. It had been decided that my father would be given a morphine drip and they were to set up hospice for the following day. We were holding off on giving him something now in fear my sister would not make it, but he was in so much pain. First we decided to let him die, and then we decided to make him suffer. After all I did to make him comfortable over the past weeks, here I was watching him in so much pain that he would rather die than see his daughter one last time and yet, I was letting him suffer. What kind of daughter was I?
As the hours went on, he got worse and worse. He did tell my brother that he loved him and was sorry he was so sick and it did not look as if he was going to make it to my brother's wedding. My brother, a big tough kid- husky and over 6 feet was breaking down in tears that no amount of hugging and encouraging words could console. At least my brother and sister got to hear their father tell him that he loved them one last time. As for me, I never got that chance.
Family was in and out. Around 8:30ish they all started to leave and say their good bye's. At this time, my mother was walking people out and there was a free moment with my father so I decided to sit and talk with him- tell him that I loved him and make my peace. I was hoping that he would tell me that he loved me too. You see my father was apparently very good at work- they all loved him and praised him, yet with his family, he was harsh, critical and you always felt as if you could never measure up. Recently people told me that he was so proud of his family and spoke of them often, but this was news to me. I knew my father was dying and before this, it was very much a love/ hate relationship. I loved him as a father, but hated him as a person. It took him dying to finally become human. Work, always his number one priority; his family always came second. Growing up feeling that your father did not love you was a horrible thing. Never hearing him say he was proud of you and always seeking his approval was heartbreaking.
Ironic that in the end as he got sicker, I bonded with him. He started saying things like, "please" and "thank you". He started asking if you could "please help him" and would say "sorry to be a bother to you again" - words he never used. For some reason he had a sense of entitlement - like the whole world owed him. As he got sicker, he became more humbled and started to recognize and admit openly that perhaps he was wrong for not putting his family first all these years. He started to tell me that he was so happy I was here to help and that he did not know what he would do without me. It took him 33 years to get to that point. I took him 33 years to finally admit that he was proud of me. After months of taking care of him so closely, I bonded with him in a way I never thought possible. I started to see another side of him that I had never seen before, but that side of him was short lived.
I know that deep down inside, he loves me, but I wanted to just hear him tell me....just one last time. But I would never hear him tell me those three simple words that carried such deep meaning. When I finally got a moment alone with my Father, I started talking to him. I asked if he could hear me but there was no response. I thought perhaps his voice was faint so I removed his oxygen mask and put my ear closer to him and asked one last time if he could hear me, but there was no reply. I replaced the oxygen mask and began to cry. I would never hear my father speak to me again. The last words I heard were of him asking me to "please fix his pillow" as he was so uncomfortable and in so much pain.
Perhaps my father could not hear me, but I began talking to him anyway. There are stories of people in comas that can hear or recognize voices, so while I was alone, I assumed that even though he would not answer me, he could hear me. I made my peace, asked him to please look out for me and to help me find my way and then I told him that I loved him. Shortly after, my mother returned and I told her that I would take a walk to stretch my legs but that she should sit with him and tell him what she needed to say. I returned about 15 minutes later and teary eyed, my mother looked at me and I said, "He did not respond, did he?" She began crying and shook her head NO. Later I learned that he most likely slipped into a coma around 8:30 or 9pm. He was just lying there, his eyes were open, he was not blinking, but he was peaceful. The nurse told us she thought he was no longer in pain and whether she was just saying that or it was true, I needed to believe it.
My heart was breaking. Although I had not heard the words I longed to hear, at least I was with my father when he was alert, my sister would not be so lucky. First her plane was to get in early, then it was running late. All the while praying she made it in time. As I sat there anxiously, I noticed his heart rate started to decline, his respirations were less and less, his pulse ox was not good and I knew it would not be long. All the sudden a text message came in- my sister's plane had landed. I stood up and went right over to my father and said, "Daddy, Jessie is here. Her plane landed. She is coming right over to see you, just hang in there Daddy- Jessie is on her way." I then told my brother to drive like the wind and make no stops along the way.
Around 11pm, my sister finally made it to the hospital. She looked at his monitors and commented that his heart rate of 99 was high, when in fact it was low. It had been as high as 150 earlier in the day. My sister started talking to him, telling him she loved him and then she placed something around his neck that she had blessed by a priest in Vegas for him. You see, anyone that wore this when then passed was to go straight to Heaven. So as she put it around his head, she said, "You hear that Daddy....you are going to go straight to Heaven."
In the last few weeks my father became very curious about death and Heaven. He told my mother and I that he had been a bad person- he worked too much and was never there for his family and he was so so sorry. He wanted to know the proper way to pray so that he could ask God for forgiveness to ensure he would go to Heaven when he died. So when my sister placed that thing she had blessed around his neck and told him he was going straight to Heaven, there was a blip on his monitor and I cried like I have never cried before because I knew how much that meant to him.
As we sat there for a few more minutes, I noticed his heart rate was now 95, then 92....88, 85, 80. His pulse ox dropped and his respiration number were decreasing significantly. I knew this was the time we had all been waiting for, yet the moment we were all dreading. I stood up and said, "I love you Daddy, We all love you". I then looked at my brother who was beside himself and said, "If anyone has anything they want to say, I think now would be the time." My brother looked up at me and said, "I can't". As the numbers got lower, my sister started telling my father she loved him and as the numbers got even lower, my brother finally stood up, came bedside and with tears coming down his face, he told his father that he loved him.
All of us with tears in our eyes, crying, telling my father we loved him and then it dawned on me and I looked over and saw the clock. It was 11:45pm on January the 13th. So I looked at the clock and then back at my father's monitor. His numbers were still dropping, digit, but digit. I reached over and rubbed my father on the leg and said, "Not yet Daddy, I know you have been through so much, but not yet. Just hang in there 15 minutes, please, just 15 minutes." Now everyone was crying and I kept watching the clock and watching the monitor. "OK Daddy, you can do it, just 10 more minutes- just hang in there 10 more minutes."
By this point my mother was crying, "He is going to die on my birthday" and I looked up at her and said, "No he is not". Looking back at the monitor, his pulse was now at 54. "Come on Daddy, you can do it, just 7 more minutes, then you can go...... just 7 more minutes." Everyone was crying and as I stood there instructing my father as to when he was permitted to die, his stats kept dropping. His pulse hit 23and my mother was hysterical. Being consoled by my brother who was a mess himself, She began to say, "He is going to die on my birthday".
In a stern voice I stood over my father and said, "NOT YET. After everything I did for you, this is the least you can do for me." All the sudden his monitor flickered and his heart rate went up to 80 and his respirations improved slightly. My brother stood up and said, "He hears you." and then he began, "Come on Dad, just 5 more minutes." His stats once again began dropping rapidly. My sister stood up, "Dad, you can do it, just a few more minutes please." My mother was in the chair hysterical crying and my future sister in law was hugging her. The numbers started going down, 40's in the 30's. My brother got back up and said in a stern and pissed off voice, "You have to be selfish right to the very end don't you?" And then as if my father heard this and did not like it, he responded with a blip on the monitor and his heart rate went back up into the 50's.
It wasn't long now, he was too unstable but he needed to hang in there just a few more minutes. It came close- very, very close. "One more minute Dad- you can do it. Just one more minute" We all told him we loved him and I asked him to watch over us..... (to haunt my ex- husband, but to watch over us). Then as I rubbed his leg and watched the monitors as his pulse was quickly getting to the single digits, I said, "Just hang in there, just 30 more seconds". Then "15 seconds Daddy, You can do it - PLEASE, just 15 seconds." Then "10 seconds" and as we all watched the monitor and the clock, "5 more seconds Daddy and then you can go". That was it- about 10 seconds after midnight, he passed with all three children, his wife and future daughter-in-law by his side. He got his wish, and he did not die alone.
My mother was crying, "HE DIED ON MY BIRTHDAY" and we all said, "No he didn't Mommy- look at the clock, it is after midnight. It is a new day- he did not die on your birthday." While my siblings comforted my mother, I walked out to the hurse's station and said, "I do not know who is in charge of making this official, but take some time- the death certificate has to say the 14th and not the 13th" ......and it does. His official death certificate reads January 14, 2010 at 12:10am.
I walked back into the room, removed all his oxygen masks and the pulse ox from his ear and I placed my hand over his face. I said "I love you" and as I ran my hand from his forehead down, I closed his eyes and noticed one little tear on the bridge of his nose. My sister ran over and openned the window to "let his soul be free" and then we all said good bye to my father.
When I left him in the hospital, he was skin and bones. He was jaundice, his hands and feet were purple from lack of circulation and I was so so sad knowing he had suffered so. This past Saturday and Sunday was his wake. He was dressed up, he had make-up on to cover the skin discoloration and they had padded his clothing to make it appear that he was not so sickly at the end. While he looked nothing like the lively man I knew growing up, he looked good compared to how I saw him last, but most importantly, he looked peaceful.
Today was his funeral. (Well technically yesterday since it is after midnight) Honestly, I thought it would be much, much worse. Maybe because I had my breakdown last night, or maybe because I knew his suffering was over, but it was not as bad as I thought it would be at all. His passing was oddly one of the most beautiful things I have ever witnessed and I am so glad I was there with him. I am glad we were all there with him. What gives me comfort on this very difficult day is knowing that he is finally at peace, his suffering is over and hopefully, he is looking down upon me and he will help grace my life with many beautiful days and help me to see the rainbows of tomorrow.
I love you Daddy, you will never be forgotten and will be in my heart forever!
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