Lana
“I
f I was going to give someone one piece of advice from his story, it would be to not let your doctor dismiss any symptoms you may have. Make sure you fight for your health!”
Hi, my name is Lana and my father/best friend is fighting metastatic head and neck cancer with his mets in both lungs! He was diagnosed almost 2 years ago but started complaining to his family doctor about 2 years prior to that. It all started with a sore throat that was put off as his tonsils being enlarged and due to his age, the ENT didn’t want to remove them. The pain continued to get worse and then his voice started being hoarse. His doctor referred him back to the ENT. The ENT did an endoscopy and claimed he saw nothing and tested him for strep which supposedly came back positive. My father was given 2 months worth of antibiotics for it and it didn’t take it away. Which is when he did another endoscopy. He ran it a little further down his throat this time and that’s when we saw the cancer. Within just a few weeks he had a tonsillectomy and they performed a biopsy of the lesion by his epiglottis and a biopsy of a lymph node.
Unfortunately, both came back positive for SCC cancer. Our next move was to our local radiation oncologists. They told us our options were radiation with chemo or surgery but along with the ENT, they didn’t believe we should do surgery first. That they felt confident they could get it with treatments. So he had 30+ radiations and 35 cisplatin. He had a port and feeding tube put in. Those treatments took a lot out of him. He lost 40 pounds and to where he couldn’t eat orally at all and could hardly drink. We both were scared to death. Each day after finishing his treatments. He just wasn’t getting better and was almost getting worse even though on his 1st endoscopy after treatment they saw nothing. The 2nd endoscopy probably 2 months after treatment, I saw a yellowish spot on his throat in the same place as his cancer the 1st time. The ENT dismissed it as just being damage from his treatments. Six months after treatment he had his 1st scan which unfortunately showed his cancer was back! This crushed my father and completely devastated me. I just couldn’t lose my daddy yet. I still needed him as my 6-year-old son does as well. Luckily my father is a fighter.
So his oncologist tells us he is sending us to a bigger and better cancer center to have a total laryngectomy with voice box removal and neck dissection. A month prior to his surgery date he became extremely sick. He couldn’t breathe, was very weak, and looked like death. He had also had 2 bowel movements that had black blood in it. I rushed him to our local ER. They ran tests and hooked him up to oxygen. They told us he had a bad case of Pneumonia and had a GI Bleed from too much Ibuprofen. The ER doctor then proceeded to tell us that due to this and his cancer, I needed to call in Hospice and he told my father that he needed to just give up. I'll never forget that day. I fell to the floor as a male nurse grabbed me and pulled me in tight for a hug as I screamed and cried. It felt as if someone was squeezing my heart from my chest. I looked over at my father and the look in what used to be his beautiful blue eyes took my breath away. I could see that he was petrified not only for himself but for me. His heart as well had just been ripped into pieces. I grabbed him and hugged him tight and kissed his forehead. My exact words to him were, "Oh Daddy, I'm so sorry and everything is going to be OK! We then looked at that doctor and told him NO, we were going to fight regardless! So he said okay and left the room. The male nurse who had grabbed me and hugged me looked at us both and apologized. He said that he was proud of my father for wanting to fight and the most important thing with that was to stay positive and to keep the faith. That our great and mighty GOD worked miracles every day. I’ll never forget those words either.
My father was then admitted into ICU. I stayed by his side for 3 days until finally, they said he was doing great and was being sent home. He came home that evening with oxygen but actually looked good considering all he had been through. Due to all this, we had to postpone his surgery for a month later to let his lungs heal hopefully. Two weeks later he was completely off of his oxygen! He went in for his surgery and due to COVID-19, I couldn't go back with him. This was another scary moment for me. I broke down as they walked him into those double doors and cried like a baby. I sat in my car for 2 hours before I could drive home which was another 2 hours away. The hospital was great and every hour of the surgery sent me texts letting me know he was doing great. He came out of surgery perfectly. He then was told he had to stay in the ICU unit for 3 days and the regular room for at least 4 days and he couldn’t have any visitors the entire time. I was angry and petrified that he wouldn’t be taken care of because he no longer had a voice to tell the nurses if he was in pain or needed anything. Luckily my dad was able to text me and video call me even though he couldn’t speak and the nurses were amazing. My dad came out of ICU the very next day which they all said was crazy! When he moved to the regular floor of the cancer center he started learning to clean and care for his stomach all on his own. He learned how to use the suction machine all on his own which the nurses also said was something they had never seen before. Three days later he was released! He had a cut from one ear all the way to his other ear. He was cut from his neck to his left nipple plus his stomach. It broke my heart to know I’d never hear his voice again but was thankful to still have my daddy. He then worked with a speech therapist to learn how to speak with an electrolarynx, a Lymphedema therapist because his face was swollen so bad that most days after surgery he couldn’t even open his eyes. Finally with all that he started getting better and his eyes slowly had that blue spark again. I just knew my dad had beat his cancer! He also felt as if this was the case.
So here we are now 3 months post-surgery and we just had his CT Scan. We both fully believed it would come back clear. Once again our hearts had been shattered. We were told it had spread to both of his lungs but his throat and neck were clear of cancer. We were told that immunotherapy is our next step and that its no longer considered curable but if his body handles it well and the cancer responds to it then it could make the cancer stable and in very few cases could shrink it so that its undetectable even though that is unlikely. Today we go to meet with his chemo doctor to do labs and speak with him about which one he recommends. We are both scared and my father feels a bit hopeless and simply tired. Tired of fighting so hard to just be given worse news. Even with that being said he is still going to fight this mess with everything he has left. He says he feels better now than he has in almost 2 years. He has gained almost 20 pounds and is eating some orally. He still has pain in his neck from the surgery but is able to get up and be a little active. I’d say at the moment his biggest complaint is being so tired and sleepy all day every day. However, as his sole caretaker and his daughter, I too have noticed I stay tired and sleepy. We are both hopeful that this immunotherapy will work for him as the cancer in the lungs isn’t extremely bad yet.
My father’s cancer has changed his life of course along with mine and my son's. It is constantly on my mind that I may lose my dad any day. I’m not mentally or physically ready for this, any part of this. We see each other every day and usually most of the entire day. He doesn’t live with me at the moment but lives at his mom’s house but I’m there every day. My father is loved by so many and I’m not sure what any of us will do if this cancer takes him away from us. It has messed with my father so bad mentally that he is now on an antidepressant and a nerve medication, which is something he has never had any issues with. I hate seeing him go through this and hate the hurt and pain he is dealing with and fighting. I just pray every day for him and all others who are or have fought cancer along with their loved ones. I pray every day that more research is done on all metastatic cancers and one day maybe they will be able to 100% cure it! This is my father's/ superhero's cancer story! I hope that his story will somehow help someone else and if I was going to give someone one piece of advice from his story it would be to not let your doctor dismiss any symptoms you may have. Make sure you fight for your health! Also, do your research and get a second opinion from start to finish. Also, stay positive and never give up, know that you are strong, and are a real-life superman/woman!!!
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