In the summer of 2005 my dad came to visit me and my sisters in Orlando. I don't know how to explain it but when I first seen him I noticed his fingers were a little swollen and I had a weird feeling he was sick. I didn't believe my own instinct because my dad was indestructible. He built custom mansions with his bare hands on Monday and on Tuesday he was rebuilding engines. Two weeks later I got a call from sister that Dad was in fact sick. He developed a pneumonia and was not able to get rid of the cough so for the first time that I ever remember, my dad went to the doctors. He was diagnosed with Non Small Cell Squamous Carcinoma Lung Cancer.
The doctors said that it was a small mass on the right lung and they were going to give him a "1/3" dose of chemo to shrink it and then cut it out with surgery. We were so worried but all he was concerned with was whether he was going to be able to walk me down the beach for my wedding in
April of 2006. He handled Chemo like a champ, it barely made him sick. He did surgery were his rib cage was stretched open and he never once let on to if he was in pain. Even after all of that in December of 2005 they said he still had microscopic cells and needed to do a full dose of chemo and radiation. And I would like to go ahead and add that my father was self employed with no insurance and just spent from August - December practically living in the hospital and Social Security REJECTED him for even temporary disability benefits. They said they needed to see if the treatment worked first. Ummm if it doesn't work then the patient dies HELLO! Its Cancer! So anyway he finished his last dose of Chemo two weeks before my wedding which was April 22, 2006 and noone would have ever known he had just gone through hell and back!January of 2007 he packed up and moved to Florida so he could be closer to me and my two sisters. He bought a lot and built the house I designed then during the holidays he lost his voice. That damn intuition came back and punched me right in the stomach! I knew his cancer was back. He married his girlfriend and went on her insurance but he refused to go see a doctor. He kept saying he wasn't going to go until the insurance kicked in which would be February. Then he started limping and I knew it was in the bone. Jan 08, 2008 I made him an appointment with an orthopedic doctor and told him that it would be covered by the insurance and we were just going to get an x-ray. Sure enough the X-Ray was black. His cancer had metastasized and was now in the bone. By the end of the week he was in the hospital. His wife made up a story and told him the doctors told him he needed to go but we knew that wasn't the case. I know he wouldn't have started treatment had he not gone into the hospital but I had already made arrangements to get him into a facility. I knew he shouldn't be near a hospital and I had a horrible feeling about that hospital. No one would listen to me. His wife blamed me for his cancer returning because she was mad that he wouldn't go to the doctor when she asked. The rest of my family was in denial at th time so they assumed I was over reacting when I insisted he not be in that hospital. He needed a facility. He had already had too many CT scans and that crummy hospital did not have the equipment or staff to provide my dad with he treatment he needed.
He was in that hospital for five days only because thats how long it took them to give him more CT Scans and have the results read. On the fifth day the Oncologist finally came and said they got the results and yes it was in the bone (OMG For REAL? Because we didn't know for the past five days!) He told him he could go home and he needed to start radiation on the knee five days a week for three weeks then he would get ported and start chemo. Ok heres where I get pissed again, Here we have a 53 year old man who has just passed his half way mark to the big Five year goal and instead of transferring him to the care of a doctor at a facility who is trained to deal with late stage recurrences this bozo treats him as if he is already dead so why rush. Chemo in 3 weeks???? I spoke with a very reputable doctor from MD Anderson and Moffitt and both of them said that a 53 year old man who just built a house and in great shape would be treated as aggressive as possible and started on chemo immediately.
So continuing on - He was released from the hospital on Friday and on Monday he was getting radiation. He was also given a shot in the belly called Heparin. Now in case I lost you let me give you the time frame again. We are on January 15th, 2008. Immediately after he got the shot he started complaining. He said he was fine until he got that shot. during the week he developed a cold and his "Team of Doctors" still continued to give him radiation and Heparin for another ten days. Now I'm not a Doctor but I know what pneumonia sounds like and I cant understand why he was getting zapped in the knee every day and not one medical professional even bothered to listen to his lungs. My 9 year old niece even knows that a patient on radiation can not get any infection at all.
Well now here we are. Dads knee feels fine but he cant breath. Hes complaining of shortness of breath and his heart is beating a million miles an hour. Another 911 call is made. Even the EMT's new something wasn't right because they completely bypassed the lousy hospital and sent him to a trauma center with a cat lab. Finally Dad will get the right care, right? Please! The Cardiologist came out and said the chest X-ray showed pneumonia and he is probably having a panic attack and sent him back to the other hospital. A panic attack? Yeah thats great. I swear Lake County gets there medical degrees off the internet. Why doesn't anyone see something is not right? Instead I'm being told I need to accept that he has cancer. Because he has cancer does that mean its alright for things to go wrong? because at some point in his short life his death is coming so that means we can throw him under the bus? Why didn't anyone listen? He got sick from the Heparin shots, his chest X-ray shows pneumonia not a soccer ball in throat and his heart rate is off the charts? This is not normal! The staff just sat there and shook there heads scratching themselves saying "Well everyone is different, maybe its just the person, I don't know why his heart rate is so high and his blood pressure has been dropping and why he now had to be intubated because he couldnt get any air in or why he couldnt even open his mouth to try and breath"
Twice my sisters and I were told we needed to make a decision and pull him off life support. What? He is intubated thats it! He is looking at me and making jokes! Pull him off life support? We were told we were being selfish and that its still life support because he cant breath without it. so we need to pull it out and watch him gasp for air! 6 Doctors had a meeting with us and we made that decision thinking it was the only thing to do. Guess what! He woke up and started breathing on his own. They prepped us for his death and he woke up. But then it happened again and once again the doctors made us feel like we were inhumane and this time they gave us a time they were going to remove it, they were nice enough to wait for his mom to get there. Guess what? He woke up! Twice! Now my Dad put himself on DNR status. they couldnt get his blood pressure up and his heart rate down and they couldnt explain it. so for three more days my dad lay in a hospital begging to Die because he refused the tube.
I have read over a thousand posts from people who lost someone to lung cancer but not one sounds like what happened to my dad. My sisters and I kept an update of his condition on Carepages.com and even today when I read the updates I still cant understand why he died the way he did. No one should ever suffer like that! Then today I received a call from someone informing me about a recall of Heparin and what the symptoms were! Now things are starting to make sense.. The doctors could never explain the heart rate and low blood pressure but they maintained throughout the entire ordeal that if those two factors were not there than he would be OK. Are you freaking kidding me? I feel so robbed and angry! To add to it - My dads wife (of 7 months) failed to tell the priest my dad had 3 kids! instead he said he had 6 kids none of them were me and my two sisters and instead of a granddaughter he said my cousin was his grandson. She wont answer our calls so we can get our pictures of us! She actually told us she wished we were not his family and literally has been trying to erase us from his existence.
I may never get over it or understand why! The hospital failed my dad! The doctors failed him! Cancer failed him! And possible Heparin failed him! And All I can do is sit here and blog about it and its not fair! And what pisses me off the most is noone would listen to me when I said he shouldn't be in that hospital. No one would listen until it was too late! And yes I know he had cancer and death was inevitable, but I cant stop thinking about how much he suffered. And maybe if the biggest loser in cancer funding wasn't Lung Cancer than after all this time we still wouldn't have to watch our parents gasping for air and begging to die because its easier than fighting the doctors for morphine!
I keep waiting for MSN Messenger to pop up with "DAD Signed in" but instead I get to read his wifes daughters Myspace bulletins about how perfect her life is now while she posts on my dads laptop that he would freak out if he knew she was even touching! And knowing that I just need to turn her web cam on and I can see him stuck in a box on top of the TV, trapped! Even though the only thing he had time to tell us was he wanted his ashes spread in the keys.
My family was cheated! My Dad could never catch a break the one promise I made him was that I would not let him die in that hospital and I couldnt even keep that promise. I couldn't get him chemo, I couldnt get him out of that hospital, I made the wrong "decision" twice and he died knowing I did that to him twice. And Then I couldnt even get him home so he can go in peace. Now I cant even spread his ashes were he wanted.
My dad loved to fish even though he never caught anything and I desperately want to change his luck so we are going to host a fishing tournament in Islamorada so we can send him some fish to heaven. We need 2500.00 for the site fee so we are raffling off Ipods to get us there. Ipods are brand new silver 4GB 2nd generation. Raffle tickets can be purchased through Paypal for $2 or buy 5 get 6.
The tournament is going to be called DMC - Fishing for a Cure! We have not picked a charity yet but I'm leaning towards the cancer sniffing dogs because right now I have little faith in Doctors! But I also think its ridiculous that lung cancer gets the same amount of money today as it did 11 years ago. We have 3 Ipods and the drawing will be held on August 13th, 2008 You must include your mailing address so the tickets can be sent to you.
To anyone interested in signing up for the fishing tournament, registration will start on August 24th-Nov 25th and will be 250.00 per person. We are hoping to get the anniversary date but unfortunately we wont know until we pay the site fee. Read More......
