No one tells you how draining cancer can be on your life or the life of a loved one with cancer. Forgive me for not writing but its been quite a journey. And a rough road at that. To make a long story short we are now at NYU. They seem to be the best. I have removed all donating links to MSKC considering they did not do anything to help. I am tired for all the souls driving down this road. No one can possibly understand the burden you are all going through. I see it in my father. My heart burns with sadness and my mind wants to explode with anger. You are all such beautiful people and to the ones who have passed please know they are angels up above whom God had a wonderful plan for. It is ok to cry and it is ok to be sad but never forget that this life does not end here. It continues and goes on unfortunately, we have to wait to be with our loved ones but I can reassure you that we all do meet again. I truly feel for all of you dealing with this disease. I understand your pain and we will fight this soon. We must stick together and win. I believe in finding the cure and I believe we can beat this!.
Hi everyone! I apologize that I haven’t been writing. As most of you know when dealing with cancer the days can seem to fly by. First I would like to wish all of you a happy and prosperous new year filled with blessings and hope.
Yes everything I have written on my blog is true and all of that has happened but unfortunately I was mistaken by the doctors. My dad had been receiving his treatments from Staten Island with guidance from Sloan Memorial Kettering but Staten Island hospital is the one I should say who has been “calling the shots”.
In my pervious posts I said how the Opdivo was causing my father to be anemic. I found out 6 months later of doing the treatment that that was NOT the case. It took 6 months for a doctor in the emergency room to finally say let’s put a camera and see exactly what is going on. And this was in the emergency room. Turns out this whole time it was a bleeding tumor in the stomach causing him to loose blood and become anemic. A great gastrointestinal doctor removed it and my father’s hemoglobin instantly went up on its own. This whole time that is what it was. Of course I became angry but what can’t you do? I was more grateful that it was removed and taken out.
The bad news is that the Opdivo was never working. For some reason my father’s body did not take to the medicine and so it was as if for those months that he was on no treatment at all. What did we do next? Well that was another adventure that I will write about later.
God bless you all!
And p.s. Always always always ask questions even if they sound stupid to you. It might save someone you care about. Doctors are great but we are all human and we all make mistakes.
When my father was at the hospital that day before my aunt and I had left to prepare for his arrival to come home I believe in my heart that a miracle happened. Not exactly a miracle but maybe even a sign or some sort of hope. If you have read my previous blogs you might remember when I said that my uncle had called us telling us that my father was walking and breathing fine. Good as new. I didn’t mention to tell you all what happened earlier that day.
An elderly woman had come in offering my father to take his communion. She had no sign that she was from the hospital at all. My father at first said no since he hasn’t been to the House of God in years but then he took it. She said a prayer over my father as he received his communion and my father made the sign of the cross. No one had any idea or remembrance as to who this woman was. She leaves. My aunt and I leave. My father is up on his feet going about his day.
Coincidence? Miracle? I say its a little bit of HOPE.
Saint Peregrine is the Patron Saint of Cancer because his cancer in his leg was miraculously cured. Below is his prayer. Bless all of you!
PLEASE TUNE IN TO CHANNEL ABC7 ! LETS STAND UP TO CANCER!!
After…they admitted my father I had no idea what to think, what to do, I just waited.
Waiting is the hardest part but of course no one ever prepares you for it. The waiting for the doctors’ to arrive. The long nervous walk from the hospital parking lot to his room. The cold walls you walk passed. The crying in one room and the laughter in another. The prayer room you go into to try and find answers. The awkward elevator rides with strangers. And last but not least..seeing you’re loved one in that hospital bed instead of in their own home and having you’re heart break into a million pieces but staying strong so you don’t allow you’re loved one to be sad.
The first two days of my father’s stay was tough. He was breathing only through his oxygen. Conscious, yet not there;in a sense. Mind you my father had also started the beginning of his 10 day radiation treatment a couple of days earlier but I will get to the radiation part of the story in my next post. We waited patiently for the oncology department to arrive so we can finally receive some answers and they did.
Turned out my father was one of the very very few that this happened to. A side affect from the Opdivo. Imagine that. The only drug that can keep him alive is the one thing that is causing his blood to drop. Our hearts sank. My aunt was trying to find a way with my uncle that maybe my father could still continue his immunotherapy treatment. The doctors of course recommended some other pills that would basically give my dad 6 months left. THAT WAS NOT AN OPTION.
We contacted MSKC and they gave us the go to try something that has never been done before with immunotherapy. My father would be given a shot once a week called “Procrit”.
In my own definition, procrit makes my father’s blood rise up while opdivo drops it down. Together they will maintain his blood level so he can continue taking opdivo. Mind you, this procedure has not been approved yet but ladies and gentlemen I can surely speak for my father when I say that as of now he has went from 3 immunotherapy treatments to 5. My father is ready to go for number 6 treatment of immunotherapy and his blood is now at a 10! (F.Y.I.some of you are probably wondering but won’t his blood go too high? Well every week before they give him the shot they check his CBC and if his blood reaches 10.5 or higher he will not receive a shot that week and they check it again the following week). ITS WORKING!. My father returned home after being admitted for a week. He is not in need of any oxygen and is getting healthier as the days progress, except.. for a couple of other things which I will write tomorrow. If I write it all now then their will be too much to read lol. But.. my father is a fighter! He is just like all of you!
It is so hard and I see that everyday in what my father goes through, yet it shows me that all of you that have been cursed with this disease are fighters and you will conquer it all. You will get through this!.
My father truly believed that that day he was going to die. Instead he is back to his routine fighting everyday. He is home stronger with beautiful black eyelashes and eyebrows again. It warms my heart but at the same time the battle is not over with this curse. I wish you all the best and my prayers, faith, and hope are with you all!.
Please return back tomorrow to hear about the miracle that happened during my father’s stay at the hospital. I believe it had to do with how lucky he was. Love you all! Prayers to all of you. WE WILL NOT LET CANCER WIN!.
When my father’s doctor recommended Opdivo (Immunotherapy) we had no idea what to expect. We were learning just like most of you are. Its not everyday that we have to learn about all these different medications and cancers.
MSKC’s definition for Immunotherapy is in the link I have inserted above. As for my definition well, sit back and get ready.
My father began Opdivo in late March/ early April. I always tend to forget all of these dates considering how many times a person can be in the doctor’s office or hospital on a weekly basis for most patients’. They explained to my father that rather than taking pills everyday he would come every two weeks and have an IV draw the medication (Opdivo) into his veins to help his natural immune system fight the cancer. A very common side affect of opdivo is inflammation of the chest which is not that great of a deal. May just cause slight discomfort for most people.
And so… We began this second chapter in an attempt to save my father’s life. Most people don’t understand how difficult it can be for the patient to go through this and also the family members. When my father began his Immunotherapy treatments I was/am fortunate enough to have my aunt be a big part in his journey. On days I would work, she would escort my father to his appointments, call his doctors, handle insurance, handle appointments and stay with him; vise versa. Some people don’t have that kind of help and for that I am forever grateful.
Every 2 weeks until present time my father has received opdivo. But of course all of you know that with cancer, everything is tricky. After my father’s third treatment we began to notice his hemoglobin levels (CBC) drop significantly. This was a huge confusion for us because that is not really a side affect of immunotherapy. Very rare. It was another scare. Imagine this, your father starts looking like his old self such as, stronger, younger, body hair beginning to go back to its natural jet black color. Everything was going great and then another spiral.
My aunt and uncle pushed to have my father begin doing blood transfusions. (A little laughter for all of you). My aunt was pushing for him to have 2-4 units because of course the more the better but my dad only agreed to 1 and still gave a hard time lol. He said what if he got a crazy person’s blood then I’ll become crazy lol. Anyways moving on… they gave my father O + which is universal for any blood type when they can’t get you’re specific blood type. ( My father is B+). After 3 attempts of transfusions my father’s CBC had dropped even lower 7.3 to be exact. Three weeks earlier it was at 10.5.
My father ended up going for a cat scan to see if he had a bleed somewhere in the body and the result of that was no bleed. You can imagine our confusion. We go home and the weekend arrives.
Its 6 am. My phone keeps ringing. Its my father. He calls me to tell me he needs to go to the emergency room. He feels he can’t breathe. He needs air. I run like the flash and get to him as soon as I can to find him on the porch trying to catch his breath. We rush to the emergency room. Frantic in a panic all the nurses put my father in a room, hook him up to oxygen and put an IV in his arm. ( Mind you my father is phobic of needles, but at this point he was begging for anything, something to make him to able to breathe again). I called my aunt and she ran to the ER. My father’s hemoglobin drops to 7.1 and he can’t move without feeling like he’s not going to breathe again. They admit him.
((( I will be continuing the rest of this story tomorrow. If any of you need any advice on how to cope with cancer or a loved one with cancer, I will try to the best of my ability to help you. Feel free to e-mail or Facebook message me with any questions or concerns.)))
This word had such an impact on my life and I’m sure on many of your lives as well. In the beginning ( 1 year and 5 months ago) all i heard were the words’ CANCER, LIFE, DEATH, and then,
VOTRIENT. You will understand later why I crossed out that word. Most of you understand how frustrating it can be when someone you can’t possibly go on in this life without gets cancer. It is so scary. In my situation, which may be similar or different from yours’, I was so ANGRY. Words cannot begin to describe the fear I felt.
My best friend, the brother I never had, my teacher & most of all my father was sick. A man who has never done drugs, smoked cigarettes, or drank anything his whole life other than maybe the ocassional glass of wine during a Sunday dinner. Of course it is not fair for anyone to get cancer whether they did smoke/drink or whether they didnt. ( I am a former smoker myself). My point to my situation here is that as a daughter I was furious. I was angry with life, God, myself, the doctors, just the whole world. In my eyes my father is the sweetest, yet toughest man I know and I am sure to many of you that is what you’re loved ones who have been diagnosed are to you.
(((((REMINDER: For anyone reading my blog who is taking offense to anything I write…please understand that I am telling my story hoping that it will help others. Thanks! ))))))
Of course I started doing what anyone would do… you know? I just…FREAKED OUT!
I must of called a million places, people, researched a hundred websites, called my uncle for answers to see if he knew what can be done. I just tried finding a way to cure my dad myself until I finally gathered my senses and said BREATHE.
His doctor said VOTRIENT ( PAZOPANIB).
((((REMINDER: In this blog I will be writing definitions of the medication from MSKC website and also my own definition of the medication and side affects based on my father’s experience))))).
My father took three Votrient pills daily for the previous year up until March 2016. It did put the cancer to sleep. The best way I can describe this is let’s say you’re cancer is an ice cube that can melt. This Votrient medication froze the “ice cube” so it did not move or spread. Awesome right? Not to me. I never felt too confident with that medication because of it’s side affects. My father ( who had jet black hair and body hair) experienced,
- High blood pressure
- All of his hair and body hair turned white ( even his eyebrows and eyelashes). You wouldn’t even be able to tell if he had any.
- He looked older, pale, very fragile
- And the worst side affect of all..Votrient tends to stop working after ONE YEAR of taking it.
My father who looked like he was 30 ( to me I like to compare him to Rocky Balboa) turned pale white like a ghost for a year. I saw him change right before my eyes. He looked so different. My tough strong father was going down into a spiral and their was/is nothing I could do to stop it. He began to take 3 blood pressure pills daily to make sure his pressure didn’t go so high to the point of a cardiac arrest. He began to loose confidence in himself as a single man when he would go out and pass by an attractive woman. That amazing man, my father was still there but at the same time, he wasn’t. Yet, how could I complain? This medication was keeping his cancer from spreading or having the tumor grow. Problem was I wanted the cancer GONE!.
One year went by, March came.. Votrient STOPPED working. My father’s petscan showed spreading in the right leg. My HEART stopped. Everything froze. It felt as if my father, my aunt and I were in a bad dream with the doctor. BUT.. you know the saying ” There is always a light at the end of the tunnel”. That light at the end of the tunnel was..
IMMUNOTHERAPY ( OPDIVO )
If any of you have any questions about votrient or anything I have written please don’t hesitate to ask. I will share as much as I know to help you or a loved one you care for. It breaks my heart to see our loved ones change because of this disgusting disease. Please feel free to reach me at any location on my sidebar.