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Hoping to become a survivor

I was diagnosed on June 30th- sort of by acident because I logged into my patient portal and saw the DX. I am here to get feedback, ask questions, listen, and hopefully gain courage ans strength as I begin my battle this week with TCHP. I am bit afraid of Taxotare and permanent hair loss. I am very scared, and alone. Thanks

Froggy32's picture

Picture I colored

I got this coloring book yesterday. Love it. 

Froggy32's picture

Truck before

This is what our truck looked like before our daughter started working on it.

Froggy32's picture

Our new old truck

our oldest daughter got this 1976 Ford F-150 truck and redid the whole thing from top to bottom to give my husband for Father's Day. She didn't quite make it in time so it is carrying over for his birthday in august. She rebuilt the engine and everything else. and sanded and painted it. I think it was an awesome gift.

Faith_Moves_Mountains's picture

Have Faith in God and he WILL move Mountains!

Hello All,

It is a pleasure to be a part of this group and to know you all. I say a pleasure because this affliction has brought me so much closer to God. After all things are taken into consideration, I consider this affliction a small price to pay for the reward received! For this reason I HAVE to tell my story. Let me begin with, for anyone out there worried or scared, call on God! I did it and he answered. Now I'll get on with MY story.

ON October 16, 2016, we were returning to Memphis from an over night trip in Boston. The trip up to Boston the day before, I was not the flying pilot e.g. I was not manipulating the controls. However, when landing or operating in Boston airspace, you have "get a hang" of the annunciation. Not saying anything negative just saying I didn't grow up there so it's just not what I'm accustomed to. I said ALL that to say that I was able to handle the speech Barrier with no problems on that day. We landed I received the taxi instructions correct the first time. Not need to request it again or clarification. That's a bonus when landing in Boston because it's busy and it makes/keeps the controllers happy with you! Didn't sleep well that night, I was tired and I didn't even accompany my Captain to dinner (and he probably would have paid) ha ha ha. I was just feeling fatigued. This is important because at this point I haven't been sleeping well for many months.....maybe even some years, but I just thought it was result of my schedule. AS a pilot I was seeing many time Zones. I was flying for the Navy reserves as well as my civilian/s companies. We had just relocated to Memphis in July, so for a year I had been commuting from Hawaii to Memphis, TN for work. More on that later.

October 16, 2016, return trip to Memphis. I am the flying pilot this day. Just prior to starting our descent to arrive into Memphis. I brief my copilot on my arrival and landing and I tell him to keep a close eye on me because I don't feel quite like myself. I had a really bad headache, I was sweating profusely, feeling nauseous and just having a hard time doing the simple stuff. I made one mistake on the arrival. I voiced to my captain that I was going to slow the aircraft to 170 knots per hour. However, instead of manipulating the speed dial, I turned the heading dial to 170. These two dials are located right next to each on the panel. Later on in the debrief we both noted that people make that mistake quite often. Good thing was I had not select heading control so the aircraft didn't turn. So basically as he was correcting me, I had noticed my error and I was making the correction. Continuing on, I landed the aircraft and slowed it to a safe speed on the runway. At which point the procedure is to transfer control of the aircraft to the captain because he has the only steering device on his side of the cockpit. NOW, I have the radios again. So Memphis controllers talk A LOT slower than Boston's and I'm familiar with this airport because it's home field and I've been operating here now for over a year (I was hired in July of 2015). But I am unable to process the taxi instructions that the controller has given me with asking him to repeat again x2 if I remember correctly! We finally get back to the line, shut the aircraft down and we are doing our debrief. My awesome Captain ask me how I'm feeling and I respond that I just need a nap. He say's, "no Q" your just not the same guy that you were yesterday. He ask me where I parked my car and I'm unable to remember. At this point he says, "No, you're not driving home and I'm calling you and ambulance". They help me out of the jet and I'm eventually loaded into the ambulance. Because he's not family they will not allow him to ride with me, so he hops into his car and follows me. When they pull me out, he's right by my side. He had taken my phone and phoned my wife. It was Sunday so she was in church. We laughed because I told him it's a black church and she's gonna be a while before she gets out ha ha ha. Again he stayed with me and would not leave until she arrived. While we waited I got an MRI and my Captain and I prayed, not only for me but for our Nurses son! She watched us interacting and was convinced that we had known each other for years! We had only met the day prior, but he was/is my brother in Christ (the prayer that we said for her son, was answered. She informed me of it on myfollow up visit a week later!) Upon arrival at the hospital I was given a CAT-Scan and it revealed a lemon sized tumor in my right temporal lobe. Basically positioned over my right ear. My wife and 14 year old son arrived and my Captain met them at the door and escorted them to my room. I gave my wife the news and I was scheduled for surgery in 2 days. After removal of the tumor, we were diagnosed with GBM stage IV. The surgery went flawless. The concerns the doctor pointed out to us were: loss of left side, lose of speech and personality change. I was talking right after the surgery, my wife says my mouth was running like a motor. I was able to walk and use the restroom alone the next day. I was home the next week after proving to the PT's that I was capable of getting around without falling or stumbling. We began radiation and chemo (temadar) 4 weeks after the surgery. Within weeks, I was back in the gym.... I started off slow of course because due to the steroids I was on my body had changed. Lost all of my muscle tone ,developed acne and gained a lot of weight. That was 9 months ago, we are now able to run over 2 miles in 20mins on the treadmill. Lift weights and play basketball. We do this in one day. well maybe on the weight lifting days we do a 5 minute warmup on the treadmill able to push out just short of a mile .75. Just yesterday I did it, in addition to a legs, shoulders, and abs workout. And I played basketball after this workout (when I play basketball I'm usually the oldest guy on the court and I'm not just out there, I'm competing and they are throwing younger, and younger guys at me to stop me....oh, I wear a red soft helmet ha ha ha I'll have to include a pic next time). My jump shot was a little off yesterday but we still went undefeated....matter of fact I had to leave while we were still on a winning streak and the team that I was on Lost the very next game), but only because we have been on the road for the last few weeks with Doctor's appointments (Duke, in NC and Hampton Proton therapy in VA) and I was unable to get to the gym. I got to the hotel gym 2 times I think and I just ran on the treadmill no weights or basketball in about 2 weeks. Each morning I pray and then do 60 pushups and about 100 varying crunches and I follow that with my devotion. As I stated earlier, or maybe I didn't. The surgeon removed ALL of the mass! And we had "clean" MRIs for about 6 months while doing radiation and chemo. We concluded radiation in December and continued on Temadar. Our May 31st MRI showed new growth, in the existing cavity as well as a little in front, outside of the cavity. Our 3 teams of doctors (TN, NC, VA) all said they would not recommend another surgery because of the placement of the new growth in the old cavity and the new growth outside the cavity. Our last dose of Temadar ended on May 19, 2017 and we found the new growth on our May 31st MRI. We began our CPT11/Avastin treatment today, July 13, 2017. So from May 31st until today they (3x doctors teams) have done nothing to fight this growing cancer. WEll I'm pointing all this out not to brag on how good I am in the gym.....I'm setting this up so I can give ALL praise to GOD! Because I know that I was healed of this affliction on Monday June 5, 2017 around the hours of 9-10 am. My wife was working and I had just returned home from dropping our son off at morning football practice. Now my morning devotion had been about the Lady that had been bleeding for twelve years. She had been to doctors all over the land and spent all of her money but she still wasn't cured. She heard that Jesus was close so she went to see him for healing. Well when she got there, there were so many people she was only able to crawl close enough to him to touch the hem of his garmet. The bible says that Jesus said to his disciples that someone touched me. Their response was Master there are 100 or maybe thousands of people around you and you say one person touched you?! HE said yes but something left me when that individual touched me! The bible doesn't say this but I surmise that if something went out of him, then something must have gone into her. If you know the story, then you know that she finally fest up and said it was I that touched you. HE told her to go, because she was healed. In addition I read the parable of the withered fig tree in which Jesus tells his disciples that if they ask and have faith then our God would move a Mountain in the sea! Now I was walking through my house that morning June 5th praying and having a conversation with God about those devotions. I prayed/asked for healing for myself and my friends wife that had been/is dealing with cancer. That's when the Holy Spirit entered MY BODY. I think what I experienced must equate to what the lady experienced thousands of years ago when she touched Jesus' garment! OH wow I was unable to control my body! I began jumping and screaming, I was having chills but I was sweating it was over whelming! I don't have the words. It's like nothing I've ever felt before. But at that time God told me that my friends wife and I were healed! I have not worried since that day! Wow his power that I felt that day!!!! I want the world to know that it's available to everyone! I have been unable to NOT tell people. Yesterday when I stopped playing, I was sitting on the side telling the guys my story and how all you have to do is have the faith of a mustardseed, ask God and he will deliver you. OH forgot to say, I called my friend to tell him that his wife is healed. Their response, we believe you because the doctors have said that she's completely healed. On my next visit, I pushed to get an MRI because I knew that it would be clean......it was not! But again I am NOT discouraged because Faith is in things NOT seen. I'm looking at the MRI. But I told my doctors don't worry cause I'm healed. Duke was trying to get me into a research trial program, for that reason our next course of treatments have been delayed! And again I'm not worried. We've had no seizures no problems.....OH GOD IS REAL. People believe, all we have to do is believe. I'm a living, breathing, driving, cooking, working out, playing basketball, praying and believing example!!!!! I love to tell this story, writing it is hard because it's just so much that I want to get out there. IF anyone is unclear or unable to follow my ramblings message or call me. I'll be happy to provide clarification or prayer. But the thing is, you don't need me or anyone else to pray for you...you can go to God yourself. We all have a direct line! I grew up in the church, father is a minister. I've seen people "filled with the holy spirit" and I've heard people talk about it but it had never entered my body. Oh Lord I want everyone to know that feeling and have that closeness to him. We will keep you updated on our progress with CPT11 and Avastin but as I told my Doctors, they and the medicines would not work if it wasn't for God. So they could probably give me an aspirin and I'd be fine! I have been looking and praying for a way to share this because I feel selfish knowing about this healing power and not sharing. For that reason, I've been telling everyone, everywhere....the basketball court, the gym, at airports in the grocery store! Oh my God, my God...all we have to do is call on him and believe!!! This is my story, through the grace and healing power of God, I will not be a negative statistic of GBM! If you haven't already please join us and just ask God to heal you and have faith....you got nothing to lose. It's a free lottery ticket that can be used for anything! You all have a blessed day, and please help me share my story! GOD BLESS YOU ALL!

I feel I don't have the right to miss him...

I miss Michael so much and I feel bad to be needy or want help as I can see most all here were with their life partners of over 20 years. I only had Michael for a short time. We met 7yeara ago but our first attempt at a relationship didn't work very well so we stoppped and only got back together about 3 years ago. In Jan this year he was diagnosed with an aggressive brain tumor and although he was young - 42 - and healthy and vibrant, he only made it for 3 months. I left for work and he was up and washing dishes and seemed normal and he was gone when I came home.

mysweetheartrusty's picture

favorite saying

We are not humans on a spiritual journey. We are spirits on a human journey.

What does cancer look like?

Look in the mirror, and then ask yourself, 'what does cancer look like?'  You're looking at it, it looks like you and me.  It's disturbance of balance within ourselves.  My goal?, is to remove, heal and hopefully create an antagonistic environment to cancer.  May we all have a chance to change.

jorola's picture

New porch tables

new coffee table

new side table

prev side table with new matching coffee table

jorola's picture

Front yard

front flowers

with big spruce

Rose's first bloom

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