Robert’s HPV cancer story

I am going to begin my story a little different; I am going to tell you what I would to about HPV. Then you can have it.  I want to educate families about Throat Cancer/HPV.  It is bad stuff really bad stuff.  I cannot understand why families do not vaccinate their children for the HPV Virus.  Why wait for one to catch it?  Believe it is not what you want or your child to go through it is pure “HELL” it has been since the day caught it and every day after for the rest of my life.    From what I have been told you can catch HPV by holding hands, kissing etc., you know your kids are going to do it why not help them out and get vaccinated?  I wake up every morning wondering why I am still alive, I should be dead.  It bugs me all day and night; I cannot get it out of my mind.  I have so many friends that either have or died from cancer.  Cancer is a coward it does not discriminate from kids to adults. Let’s beat it and believe in God and everything he does for us.

At age 52 I was diagnosed by Duke Surgical Oncologist Ramon Esclamdo MD and Dr. David M. Brizel MD, with advanced stage human papilloma virus (HPV) associated squamous cell carcinoma of the oropharynx.

The story begins. My first sign of getting sick was at work, I was parking a car.  While walking back to the dealership and started walking side ways to my left which is the side of my cancer.  I shuck it off and talked myself out of being worried, I am good at that.   I began to have a sore throat and had been coughing and spitting up blood at the same time.  That kept on for a while then my left ear started to go deaf when I would go to bed, I could fill a large mass going over my eardrum then it went blank.  After that it I was deaf in my left ear.  I knew it was time to go the doctor. I went to the local urgent care the doctor claimed he looked down my throat and ears and saw nothing and said it was allergies and I needed to get the allergy spray, I did, and nothing happened. To this day I am not sure what he was looking at. By then I could feel hard mass on the left side of my tongue.  Luckily, I had made an appointment with my local primary doctor for a complete physical.  When I went for my follow up I was told that I am “one healthy man and will live for a long time” no problems at all. And was told I had bad allergies. Makes you kind of wonder about “complete physicals” what they consist of and who is giving them. A few weeks later I was feeling much worse, I asked my wife to shine a flashlight down my throat I knew it was bad.  She about passed out and said this is not good not good at all. My tonsil was hanging inward in my throat with open sores. We googled throat and mouth cancer that night and I was scared and knew I was going to die. I called the local ENT and made an appointment thank God I have BCBS Insurance so he took me in.  I was asked if a doctor that could refer me to them and I told him my doctors had no clue what they are doing. He looked down my throat and ordered biopsy ASAP.  The ENT doctor told me I have cancer but it was “good cancer” a few radiations and chemo’s here and there and I will be fine.

We wanted a second opinion and made an appointment at the Duke Cancer Institute.   After further test I met with my doctors and was told it was advanced stage HPV associated squamous cell carcinoma of the oropharynx.  This is not “good cancer” this bad really bad cancer Stage 4. Thinking every local doctor I met with had no clue at all what they were doing, they let my down.  If I would have listened to them I would have been dead a few years now, until this I do not know how they got away with it and how many people have been diagnosed with “good Cancer”.  I did call a lawyer to ask if I had a case and was told if I would have died I there could be case. Yay??? More tests were performed; I met with my oncologist to come up with a plan to treat my cancer. I had two choices either surgery or radiation with chemotherapy so we decided on 7 weeks of intensive radiotherapy and (35 treatments) concurrent chemotherapy (10 treatments) administered on the first and fifth week.  It started off good the first week with no symptoms. The second week I started feeling “it” and began to lose my appetite and my throat was beginning to hurt. By the third week, the radiation began to take its toll. The vomiting felt like hot bile raking over open sores day and night. That went on four more weeks with the next round of chemotherapy fifth week.  During that time I was admitted to the hospital for many issues such as failure to thrive, malnutrition, constipation, abdominal pain, orthostatic hypotension, neutropenia, mucositis, and gerd which were all side effects of the radiation.   Near the end of my treatments I was either walked or rolled off in a wheelchair to get IV’s or admitted to the hospital daily it felt like.

I was at a point that I was asked a few times if I wanted to talk to a preacher and I did.  Not being sure what God thought of me, from what I know now God thinks a lot about me.  I know there is no one like My God!!

Recovery was not easy.  I lost 50 pounds; my weight was down to 137 pounds.  The first month at home I had bad panic attacks, would not eat and had open sores on my tongue from the cancer was that were getting worse.  It was really bad, I went back to meet with my doctor at Duke and he told me to get over the panic attacks which I did.   Then he said “Robert I did my job the cancer is gone if you want to die, die. You need to eat.” Tough-Love!! He warned me that if I don’t hurry up and eat and gain weight, he will put a feeding tube down my nose. A few weeks later, I had a feeding tube. It was terrible and hated it.  I had to spend every day morning to night feeding chocolate drinks into the tube, which fed through my nose and into my stomach. Until I threw the feeding tube up one afternoon and had to go to the local doctor to cut it out. I ended up going to work in December which was way too early.  I was taking 6 oxycodone a day two for breakfast, two for lunch and two for diner while numbing my mouth to attempt to eat. I remembered crying on the way back to work during lunch because my mouth hurt so bad. I am completely off the oxycodone went from 6 to 4 to 3 to 1 the last one was the toughest.   During that time the sore on my tongue had gotten infected I was not eating at all and was losing more weight.  My doctor at Duke sent me back to Durham for Hyperbaric Chamber Treatments to cure my tongue.  The treatments consisted of 70 dives twice a day for 35 days two hours per dive at a pressure equivalent of being under of 33 feet of sea water.   I had to put a plastic bubble on my head during the dive and sit and sit with other people with plastic bubbles on their head.  People with no legs, no arms etc. about anything you can think came into the Hyperbaric Chamber.  I remember one day I went in there and I could her a vacuum running and looked in the main chamber are there was a patient getting his lungs vacuumed  I will never get that picture out of my mind.  The treatments did work.  If not they would have had to remove a part of my tongue.

I am cancer free and gained my weight back, gone back to work, and attend Church regularly.  I will have dry mouth, chemo brain, tinnitus, and a few other long term issues to deal with.  I would not have made it without God, Duke Cancer Institute, The Caring House, Family and Friends. I love them all!

Now do something about it!   Message me Robert Russell if you have questions.

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