Synovial Sarcoma in the pancoast position at 37 years old. Please read.
From shoulder pain to sarcoma: Hollis' Journey! He truly is my one in a million. Read to see why!This picture is the day I promised for better or worse!!! Best day of my life and I am thankful I am able to take care of him through the rough times.Hi! My name is Tammy Mason and Hollis Mason is my husband. Hollis is 37 years old and has been diagnosed with a rare cancer. Below is the story. As if 2020 wasn’t bad enough, life threw us lemons and we are humbly asking for help to make some lemonade. My 37 year old husband, Hollis has been diagnosed with a rare cancer. He has a pancoast tumor. A traditional pancoast tumor sits atop one or both of the lungs and grows quickly to affect the lymph nodes and nerves in the arm with no warning. The ‘first’ symptom is shoulder pain as if you pulled a muscle. Being a healthy male working in the towing and recovery industry, this very well could have been just that, a pulled muscle. Or so we thought!! It was a tumor!!! This is an excruciating type of tumor because it encompasses the bundle of nerves exiting the brain stem and follows numerous nerve pathways into the chest and down his right arm. The tumor also causes severe swelling in the armpit and chest area. His body stopped sweating on one side (right) and he could no longer sit or lay down. He could only sleep in 10 min intervals due to pain and pressure. Hollis was in tears daily as the nerve pain was more than one person could bear. We saw our regular doctor who did a few basics and what the insurance company wanted. After the MRI, CT, PET scans we were requested locally by our general practitioner, we were sent to University of Louisville hospital in Louisville, KY. We had an appointment with a top pulmonologist. The trip was sheer agony as he had to sit in a car for 3 hrs (remember I said sitting and lying were the worst positions). When we got there the team led by Dr. Gauhar had conferred and decided that since we were so far away that they would admit him to the hospital for further testing. After 4 days of NPO everyday and not getting a biopsy, finally on Friday we did. We also, at this time found out how RARE this tumor is and how painful it would be. Pain management also did a nerve block (ulnar and ganglion) in and around the shoulder. He was a new man and we made the 3 hr trip home in bliss. Or so we thought. 18 hrs later…. the nerve block wore off all at once. Holy cow this was horrible. I rushed him to the local ER. After 2 shots of pain medicine and a call to University of Louisville hospital they wanted to helicopter him back to Louisville. It was too stormy to fly though. I asked them if they could get his pain under control and we could then manage it at home until the oncologist called. They obliged.By this time, it’s been a month since the pain started and Hollis’ way to deal with it was to hold his arm and pace since he could not sit or lay. The bottoms of his feet cracked open from being up on them for 30 plus days. His calves, shins and back were hurting from walking so much. He had to eat standing and was falling asleep while being upright. He was like a zombie just pacing around like this but he couldn’t do anything else. As a wife, I couldn’t do anything to help and this is what hurt me the most. Women, always want to help and make people better but against such an aggressive cancer I am helpless.We finally got a referral to a kind of local (Paducah) oncologist, Dr Claudino. He was very interested in this very rare case and wanted to help control the pain first while they work on a treatment regimen and possible surgery. He set us up to see Dr Locken the same day and to begin radiation to at least tone down the pain to a manageable point. Dr Locken agreed and started radiation the same day. They marked him and started radiation that afternoon but both doctors were still waiting for type, stage and other specifics from the biopsy. The thought process here was it was a carcinoma/lung cancer and we should treat as such. He started 5 min a day (60 miles away) radiation treatments for 8 days to help control his pain. In the middle of this radiation regimen Dr Claudino wanted to start chemo once a week. We show up for chemo and Hollis has a reaction that sends us to the ER. He was shaking, unable to stand, very red skin, sweating profusely on the left side, had tachycardia and was struggling to breathe. The odd thing that happened though is that the drug (Taxol, for chemo) caused a kind of reversal of his pain medicine and he was past excruciating pain at this point. I was unable to get him to the vehicle alone. With the staffs help we were able to get him to the ER, in the truck without an ambulance. The ER treated his pain, got him and the pain under control again and released him. We even made it to radiation that afternoon since we didn’t want a wasted trip. The Paducah doctors had a conference again and with some new findings decided to get a sarcoma specialist to take a look as it seems to have markers for that type of tumor. They asked if we would be willing to go to Lexington, KY to University of Kentucky medical center. It’s not like we could say NO, we need to know what this thing is and how to get it evicted from his body. So UK, here we come…. After a 4.5 hr trip and a hotel stay, we didn’t get any answers because the final pathology has not been obtained. It seems University of Louisville has sent the biopsy tissue off to an outside lab when they could not identify the cancer type. The UK appointment was with one of the top sarcoma specialists in Kentucky. Dr Reema Patel explained many things and apologized for the mess up. She reiterated even more so how RARE this is and she explained when you don’t see something every day it takes some digging and researching to get a plan together. She is waiting on the final pathology/biopsy report to recommend treatment to his oncologists here in western KY. So, though we met with her and her colleagues it was a wasted trip. We learned nothing. And this is why I am here. My husband Hollis has worked full time all his adult life. He has had a few random jobs but for the last 4 years he has dedicated his life to helping others. He is a towing and recovery specialist (he literally can tow anything). He is the guy that gets up in the middle of the night because someone needs a tow, a tire or gas….. He also transports semis, tractors, construction equipment, moving trucks and so on daily. If it can be moved, Hollis will move it. He is the one that works countless days, holidays, special events, nights and weekends to make sure others are safe. He goes above and beyond to make sure folks get home to their family, as he sacrifices time with his own. Selfish, he is not! I’ve even rode with him before as it seems that in order to have time together, I had to go! He loves his job and they love him. Did I mention he was employee of the year 2019? He truly is a blessing to anyone he comes in contact with and cancer cannot change that. He had to leave his job he loved. He is unable to drive with the medicines he is on. His whole world was crushed when he made this realization. His towing family was exactly that….a family. I can fill most voids in his life right now but the camaraderie of his towing brothers and sisters is something I do not and cannot comprehend. They truly stick by each other. It’s beautiful! Here is the part I hate to write. This is killing us financially. My parents always told me to have a nest egg, well when you don’t have the extra to begin with; it’s hard to have a nest egg. Many of his medicines have been costing us out of pocket because the insurance company feels he should try other drugs first. Personally, I think that is crap the doctor should determine drugs not the insurance company. But even though I am fighting them, he needs the medicine, so we have to get it. Also we are traveling to and from Paducah everyday for treatments (57 miles one way). We have special visits coming which will involve staying a night or two. Since COVID not many hospitality house type lodging is available. The truck needed repairs before this happened and we are hoping it will last. When they say, people are one paycheck away from a catastrophe I believe them, because this is what is happening.His specialty appointments and possible surgery will be in Louisville or Lexington and our vehicle is a Dodge Ram and not the best on gas. When we purchased the truck 3 years ago, we never knew this would happen and that we would drive it hundreds of miles every week. We are just simply going to need help. We have normal bills, no extras and we are considering what things we may have to let go. Asking for help is not only the hardest thing to accept but it’s also the hardest thing to ask for. So here we are and I don’t even know what dollar amount to choose because anything can help….anything! If you’re able to donate, I thank you in advance. If you’re not able to donate but can share this campaign, I thank you in advance. If you know a friend who can donate or share, please send this to them, I will say thanks now. NO donation is too small, no shares are too many and no heart is more grateful than ours. I will update very frequently. Thank you for your time and reading our journey, God Bless You!Hollis & Tammy Mason - Cadiz, KY#slowdownmoveover #cancersucks #towlivesmatterCheck out this link for info on this type cancer.
https://www.cancer.gov/pediatric-adult-rare-tumor/rare-tumors/rare-soft-tissue-tumors/synovial-sarcoma