My Journey with lower right tonsil Squamous cell carcinoma, 1 year out Clean scan 1.27.2015. last po
OK, here goes, This is long winded. sorry,
Early to Mid May of 2013 my wife,Terri made me an appointment at the Dr. for a check up thinking sleep apnea was an underlying issue that was causing me to stop breating for short periods while i was sleeping. So when I went, we ended up doing a follow up with a ear/nose and throat specialist in Ardmore which took a biopsy. A Few days later on May 31st, I am informed I have Squamous Cell Carcinoma at the Lower Right side tonsil. Not the center where most see, it instead was in the right-hand side wall. That day I was told we are sending you to OKC to Stevenson Cancer Center for more test. From May 31st until June 11th Had to be the Worst Time of my life. It was hard just being told you have cancer but NOTHING Else was really explained at that point, That was the hard part.
Fast forward to June 10th, My last day of work, June 11th we went to the first appointment at Stevenson Cancer Center thinking it was going to be a one day deal. We left there with appointments set for the next 2 days. Leaving there on Thursday the 13th and coming home with a plan of attack that would start in about 3 weeks or so. After waking up on Friday the 14th wheezing and sounding like a teapot at night Terri calls back up to SCC and informed them. That evening a trip to OU Medical Center ended in with an Emergency Tracheotomy being done. I wasn't in the emergency room waiting area very long at all, Last remembering going in for prep around 6pm. Waking up in the ICU room at 10:30 was scary as can be with no one other than the nurse running a tube down my trach cleaning it. I had been out for a while apparently and was waking up to being told don't try to talk. It was not until about 12:30 or 1:00 am before Terri and mom came in Livid that No One had come and got them in the waiting room. No messages or letting anyone know I was out or anything. That night Quickly learning to breath with the trach was interesting to say the least.
Saturday morning and mid day I had some Awesome Visitors, in that I was given a small notebook on that June, 15 2013. On the cover it has
(" Be Strong and of good courage; do not be afraid, nor be dismayed, for the Lord your God is with you wherever you go. Joshua 1:9") That and each page has a short inspiration on it. I was able to keep that for a day to day diary that helped push me through whatever was to come. Those daily inspirations meant so much as time went on.
On Monday the 17th I went back into surgery to have a Port for chemo and a Peg Tube/Feeding tube added a couple of days later I was released from OU on the 19th. For the longest time I had the mental block making it where I wouldn't use the feeding tube at all.
After a week of several pre-chemo meds, June, 26th I started my first round of chemo with Cisplatin, Taxotere and a 5 Day pump of "5FU" that was in a bag pump that i kept attached with me for 5 days. (annoying for sleeping) That first round of chemo was probably the hardest because of not knowing what was coming. Nausea, Fever, Dehydration, not being able to drink or eat hit me hard enough to put me back in the hospital from July 5th to July 8th. The first round I didn't use the feeding tube like I should have and that's what got me in trouble. Once I was able to get past the mental part of using the feeding tube we went round and round trying to find formula's that i could tolerate and keep down so i could start using the feeding tube. Taking meds and forumla at the same time made for a few times of it going in and coming right back up. Nausea is a nightmare!
From the 8th of July until the 24th when I started the Second round of Chemo there were several office visits that whole time. 5 day pump also started on the 24th. By the start of the 2nd round ALL Taste Went Away For good, Everything Tasted like cardboard and I had lost all my hair by then and shaved my head. Days on end sleeping and not wanting to move or eat at all due to the Nausea all the time. Then again in Aug for 3rd round on the 6th with another 5 day pump. Around the early to mid parts of July the only thing i was eating by mouth was chicken broth or very soft bland foods then Stopped altogether eating by mouth by mid to late Aug.
This whole time from June 15th on we had been staying in Okc in a hotel so I could go to my daily visits and be in and out of SCC. We would come home every other week or so for the weekend or friends family would come up to visit. We had come home for a day or two around Aug 15th, I laid down for a nap and woke up feeling like someone was stabbing me in the lower back, Decided to go back to Okc an hour away to be closer to Dr's that knew what was going on, We made it 10 minutes to Ardmore ER, finding out I had a blood clot in lower right Lung, I Took an Eagle Med flight back to Okc was interesting to say the least,(great flight crew. first time helicopter flight for me) I was awake for 90% of it and in Pain. Spent Aug 15th until Aug 23rd in the Hospital again, leaving taking blood thinners. That was the END of major Chemo and 5 day pumps. Once a week during radiation was only chemo after that.
September 11th, 2013 I started Radiation, I had gone in and had a mask made before I had the trach so I had to have a new one made. For the next 8 weeks it was a Monday through Friday daily ritual of going in laying down in a type of cat machine with a mask that made it where you could not move at all. At first it was not too bad the first couple of weeks other than mucus drainage beyond belief. Then as time went on the burned throat happened. Blisters and raw burned throat all the time.
It was at this point I really started loosing weight, feeling bad all the time. Terri was really pushing me day to day helping me be able to do the Radiation from Sept to Oct 29th. Days seemed to run together with a morning trip across town to SCC for a total of about 30 minutes in the building sometimes. Other days like Wed. I would go in with Radiation in the am and sit the rest of the day and have a couple of Chemo bags run through an IV. Terri did A Lot of Crocheting during this time. She did a lot of scarves to give away to others that were doing Chemo also.
On October 29th, 2013 I did my Last Radiation with family there. November went by and I tried to eat at Thanksgiving but that didn't happen. Then Christmas i was able to eat a little. I gradually started with soft stuff and liquids. By mid Jan i was doing pretty good eating and got better week by week.
January 27th, 2014 at 3 months out I had My First Pet Scan and it was clear, I got my Trach out that day also. Mid March the Feeding tube came out and May 15th the port was taken out.
Then in late June I started part time work at Lake Murray State park at the Elephant Rock gate house. Going to the Lodge Front desk and full time in late July.
There are not words to say how thankful I am for the constant words of encouragement from soo many people throughout the whole time that everything was going on. I had Terri with me day in and day out pushing me, Making me take the meds i had to so i wouldn't get discouraged from being sick daily. The support system of friends and family with messages and chat's with so many on Facebook that kept me going also. I just hurt knowing others that have not been so lucky.
On January 27, 2015 I have now had my First Full Year out scan. a CT scan with contrast and Dr says everything looks good for the neck area with it and is pleased. At this point I drink only Lots of Water, a glass of Milk a day and sometimes coffee with milk & sugar in it. I Have not had a Coke, Dr Pepper or any kind a of soda since mid July 2013 and don't miss it one bit. Eating halfway normal, still fairly soft stuff most of the time and mostly always something real moist. Dry foods are a nightmare most of the time.
The words of positive encouragement from friends, family and God mean more than anyone can ever say.
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