Saturday, October 31, 2009

Mega Dose 2 - Day 3

One of the things I may not have mentioned is the "Cotton Mouth" effect chemo has. This round has been more frequent and sever than the last. We're talking dry to the point of feeling like your mouth is cracking open. Dry to the point it will wake you often. Dr Panella had warned us of this as a side effect. Usually it's not permanent but sometimes it becomes permanent. Still... a small price to pay for another day.

  Anyhow, I woke up again throughout the night, my last post being after 2 am. I finally went back to sleep about 4:30am. My throat felt like it was closing off and I postponed going to sleep as long as I could as I feared not awakening. There is this animal survival instinct that takes over that we fight as long as we can. Now as will be answered in a previous post I don't fear death, I have seen what comes next and it is great. What I do fear is the path to get to death. Religion does not play a part in fearing the pathway to death, anybody with any sense will dread the pain. Ready of not, we fight to breathe just one more breath. I think that is the way God has made us. Add that with a world that teaches us that quantity is better than quality and an ever unbelieving in God world, and we fight.

  I awoke to the pain of Cotton Mouth and the damage suffered from the uncontrolled throwing up 3 days ago. I took 2 - 10 mg Loratabs and I'm feeling a bit stronger despite the pain. I actually believe I can stay up for a while, maybe even walk out in the yard this morning. For now though my bones ache and muscles crap. I'm not being negative or ungrateful I'm being honest, so that should someone go through this they might know what to expect. I am lucky to have an honest doctor that cares enough to be brutally honest, some might not.

  A quick trip out the door and it's raining again and 7:16am. The brief walk does however get rid of the muscle crap, to an extent. Moving about though brings back the sick feeling, so the rain may well be a blessing in disguise. I'm normally an active person so I expect this looks like a rat in a cage.

Friday, October 30, 2009

Mega Dose 2 - 2 days after

It's after 2am and I am just now sitting up for any length of time. I've ate 3 peanut butter and crackers, 2 jellos and attempted to eat Chick-Fillet nuggets, keyword there being attempted. OK, actually i ate them, they just didn't stay. My throat feels ripped apart from all the throwing up. If you have throat cancer this is not a desired effect nor is it moving forward in healing. I've kept about 10-20 mg of Lortab at a time and phenegran (probably spelled both wrong), and the pain is still busting through.

  I'm considering shaving my hair the rest of the way off, it looks like something out of a horror movie right now. I got in my new Do-Rags from Sparkling Earth Products and they are great! Inexpensive and attractive. Google them, they are worth the time. I now have 2 Ms Clawson made me, 5 from S.E.P. and 3 from Classic Leathers. I'm in style now, lol. Also have 3 Toboggans.

  I read my Facebook comments tonight and thank God that I have such great friends and family.  About to go back to la-la land.

Wednesday, October 28, 2009

D day for Mega Dose Chemo 2 - Day 1

  Well, D Day for  the 2nd dose is the 28th. The effects should hit according to the doctor on the 30th. I awoke though this morning 0600, already in cramps, dizzy, and my sight impaired ever more. Already weak. This makes me think it is going to be a long next few days.

   Well, it's past 1pm and this is on and on and on with the hiccups.  All day, whenever I get active I start hiccuping. I

  I've slept on and off all day. I keep thinking if only I could throw up then it occurs to me, when I do it is going to hurt my throat even more. 

Now it's after 11pm. I have throw up everything I have eaten tonight. Newsflash. If you have a mega dose of chemo, no Chicken Fettuccine. believe me, it tastes a lot better going down than up. After all that, I needed t numb my throat and it took 2 -10 mg Loratabs just to easy it off.     

Meeting the Radiologist

  We first met Dr Green (I say we because my wife was with me). He felt around my throat and talked. He spent time talking to us, answering questions and telling us what and how things would be done. He was open and honest, sparing no details about the treatment. He didn't sugar coat it, just came out with it, and I respected him for that.

  He then opened up what looked almost like an attache case which contained a scope like Dr Rathfoot has used to go through my nose and down into my throat. I asked if he was going to numb me first and his reply was that he had done many of these and was very good at it, so he did not see the need for numbing. He said it would be minor discomfort and should there be pain, it would be brief and little. My wife watched as she said she saw my feet crunch up in my shoes, my arms squeeze the table I was setting on, and the look in my eyes and on my face... there was pain, and plenty of it.

  Play special attention to this part if you are a doctor. The quickest way to show a cold unfeeling heart is to purposely inflict pain needlessly. That is the quickest way to lose confidence of the patient and the quickest way to drive a wedge between the trust they have in you. That is not being a caregiver and while yes the person is dependent upon a doctor, the key word is a doctor, not this doctor. A distrust is formed after that and it is hard to overcome. True, there are tests that are painful, there are ones that shouldn't be, this one shouldn't have been.

  Needless to say, the first meeting didn't go too well. Shame though... it could have.      

Some Peace Between the Chemo.

Coming Soon

First Dose and the Aftermath

   I wasn't too sure what to expect but the my doctor explained it well and the ladies in the "Chemo Hut" were very nice. I haven't had to have a port so far, so I'll lucky. I've also managed to keep away from a feeding tube. Then again, we ain't out of the water yet.

   I was set in a nice comfortable recliner, they even have a small TV if you want to watch it, I'm just not a big fan of TV. It's cold in the room so they also offer you a blanket. There is an older lady and gentleman that works their way around the room seeing if you want anything to eat or drink. They are nice people.

   A lady sat beside me and was taking her dose gave me some good advice. She said eat only with plastic, never metal. When the metal touches your mouth it will cause it to break out in sores. That was a great piece of advice.

  Thursday I felt fine, just as Dr. Panella had said ad just as he said, Friday it hit... and it hit hard. I barely got up from the bed until Monday, seldom going outside. We did however go to UT Friday for a CT scan, it is a long trip sick. I don't recall when but sometime about Sunday or Monday around my eyes became crusty. I notice a slight change in my vision an my strength is gone, not to mention stamina.

   Week  2 was just as Dr Panella said as well and while still a bit weak and tired, felt better considering. I went to be with a full head of hair Tuesday night and where I awoke Wednesday morning it looked as if Bigfoot had slept in my bed, lol.. This would continue up until a couple of days ago. Note here on this one, I lost most of my hair either in my sleep or in the tub. Take two towels in there whith you. One for your head and the other for everything, lol. Unless you like picking hair off your body and mouth. Funny being pretty much bald, it's cooler that I thought, so I wear something over my head. Ms. Clawson at Easy In Market has made me 2 Do Rags. She lost her husband a couple years ago to cancer.

   On the end of the second week I could eat more. During the first 8 days though I lost 10 lbs. I had, at three weeks out gained back all but a few pounds. So once again I slide past the Feeding Tube.

The Miracle

   We did not know anything about the doctors we have now but would soon learn that Panella was at Rathfoot's office as a patient. Dr Rathfoot left the room going over doctor's names and came back into the room and told us he may know of one that is very good. According to Dr. Panella, Dr. Rathfoot came into his room and asked if he would see me. Dr Panella agreed and so we ended up going to him. What are the odds? To beat it all, it was Dr Panella who saved one of my cousins years earlier when all others had given up. He was with a different hospital back then.  

  God always has a plan. Even when we think we are alone, He is always there with us.

The Real Cost

   This is something I felt needed to be said so I made a spot for it when I started this. What is the real cost of cancer? We always think monetary or the person that has it and while that is correct, it is the cheapest part of what is owed and paid. This is some things from my heart.

  The real cost, at least for me, is seeing the fear, terror, and hurt in my family and friend's eyes. They are just as much victims as I with one big exception, they are innocent. This kind of cancer comes usually from one of three things: Smoking, Acid reflux, Alcohol. Now I don't drink but God knows I've smoked like a Freight Train and have the Acid Reflux. My wife and kids don't smoke. Most of my family don't smoke. They aren't the ones throwing up or going through the physical pain, but they are suffering emotional pain... and for that I am truly sorry.

   I was one of the guys that said, "Something's got to get you". A very wise Indian Chief once said, "It's easy to be brave... from a distance". Stop for a moment and think about that. A short sentence that contains more wisdom than whole books do these days. So if you are a tough person like I was, remember that. If you do as I have done, use stupid sentences to make up for your actions like I did, think about that. There is nothing brave about sitting in a chair having poison put into your veins while your family watches. There is nothing brave about throwing up what you eat and losing weight while your family looks on helpless. There is nothing brave about your bones hurting deep inside, losing your hair, turning pale, physical weakness to the point of not being able to do anything, while your loved ones watch helplessly. There is nothing brave about being at the mercy of the world. There is nothing brave about trying to figure out not only what will stay down but what you can actually swallow. There is nothing brave about choking. There is nothing brave about having to keep a spit bottle to spit out infection.

  Now I do not fear death, I've seen it before with my heart attack in 2005. I know what it feels like to lay there helplessly while you fight for your next breath. What I do fear however is the road that leads to death. While both are painful, the heart attack was relatively quick, this is slow. It strips from you everything. Your independence and energy are slowly taken from you while your loved ones watch. It is truly a humbling experience.

  It will at times seem not fair, but then again life isn't fair. I don't ask why me because I do not know of anybody I would wish this on, so my question then becomes, why not me.  It isn't a curse placed by God but rather a chance one takes by choosing the wrong path. Free Will is something that God gave us and so we select a path on a daily measure. Be it smoking, drugs, alcohol, sodas, etc... it is our choices that sometimes bring about bad things. Falling is part of being human and the fall is not what determines who we are, rather it is getting back up and what we do after the fall that determines who we are.

   It will show you just how brave you are not. It will show you just how many people care, and that can be amazing, actually humbling. It will also show the true side of some, be it good or bad. Either way, you are at their mercy. I have been pleasantly shocked and by one not so pleasantly shocked. I will say this, I would rather endure this pain and die with a compassionate heart that to live without one.    


An Answer

    My wife gets me in with a Dr Rathfoot of Saint Mary's, I will call out his name and affiliation. He is an ENT. Please remember these words, ENT. You have a sore throat that is persistent, go there. On the first visit he runs a scope down my nose into my throat, don't worry, he numbs it. He finds a Tumor at my Larynx.

  Dr Rathfoot sets up an appointment to get a biopsy at day surgery's earliest opening at St Mary's Hospital , and takes more than he started out going after. Yes I had signed to agree to allow him to do whatever he deemed fit. He takes 2/3's of it out. This gives ample tissue for a diagnosis. I want to bring about something special that I have never had offered at a hospital, and as you will learn, I've unfortunately become familiar with most around here. A little lady entered my room while I awaited surgery, I'm assuming that she had read the portion that asked about religion and what faith if any that i was. I checked Baptist. She humbly asked to enter and asked if I had any opposition to her praying for me. I was delighted. Now I'm not sure, she looked kinda like a nun, but that was a Baptist sounding prayer, lol. That one small act of kindness made all the difference in the world to me. Take note here hospitals.     

  A week of two goes by and the Diagnosis comes back Squamous Cell Carcinoma in the pyriforn sinus area. This is not the kind you want of the four available. Know causes are smoking, drinking alcohol, and acid reflux. This man ( Dr Rathfoot) is one of the gentlest and kindest men I have even had the pleasure of meeting. He is very gentle with both my wife and I and very optimistic. Intelligent and kind, I would recommend him to anybody and the only reason his name is mentioned here is to say thanks and inform people there are great doctors out there, this is one of them. I also have to say that Saint Mary's Hospital is one of the top in care, kindness, and professionalism I have even been to... and I've seen a lot of them. A Big thank you to them as well.

  On our follow-up visit about a week after the surgery, Dr Rathfoot in one of the most kindest ways revealed to Denise and I what the biopsy showed. He asked if I wanted to use the same doctors I have for my Non Hodgkin's Lymphoma, but they are mostly in Nashville. We asked him if there was anybody he could refer us to that he preferred? Zic and Greer are great doctors, and I thank God for them, but Nashville is too far to drive frequently and both of them are sub-specialists. If you have CTCL, I highly recommend them. Good doctors usually associate themselves with good doctors. He left the room, talking in a low tone going over names in heavy deliberation. Now if you do not think God works in mysterious ways, get this next part. On that very day a Doctor named Panella from UT was there being seen by Dr Rathfoot. We would learn this much later. The two talked and Panella agreed to see me in his earliest appointment, about 2 weeks. Little did we know that this was all about to turn at that time. Remember, this is looking back about a month now.

   Come to find out, it was Dr Panella who fixed my cousin that was given 3 months to live, that has been 14 years ago now and she eventually went back to work! He was at at a different hospitable then. Dr Panella didn't not sugar coat anything and like Dr Rathfoot, took his time to explain everything and actually encouraged questions in depth. Now a lot I don't understand but he put it in as close to layman's terms as possible which sometimes shot straight over my head, but Denise was always with me. Did I mention my wife is a Cardiology Nurse? If not I should have and will probably will again. This man actually cares and is not only knowledgeable on all aspects, but kind and caring. He seems to doctor the whole person. While I've not asked him, I suspect he is a Christian. You just can't hide goodness, caring, and faith. All doctors should take note of these two mentioned. They are what makes good doctors great, and good work better.          

  Now this by no way stopped the choking at night, it still progressed, maybe even sped up a bit. I was still making my Peace with God each night and slowly had become use to the possibility I would not see tomorrow. Just for the fun of it and curiosity I started keeping the larger pieces of meat looking stuff. In another appointment I asked what this was and most was scabs. Sure enough, within 24 hours they were turned back to a brownish, blackish looking piece rather than the old hamburger tan or brow color. It was scabs being burnt off by the Dr Pepper, which was a good thing. As this thing scabbed over it once again impeded breathing, eating, and swallowing. It also limited just what I could eat.

  The smoking seems to feed this thing. While I've never even seen pictures of it, it reminds me of the movie The Blob in it's growth and seems to crave and need cigarette smoke more than I do. What's wrong with that picture? Solution is simple, quit smoking. Implication of simple solution, not so easy. But I once again for what seems a million  times try to quit. I've done it all, lolly pops, gum, pills, patches... you name it. Then On one of the people mention they quit with an herb not even designed to quit smoking. As I read many other people then tried this stuff and quit. No side effects. The name is Sulfonil by Thorne Research. (I do not get money telling you this).

   These became our silver lining in the blackest clouds.


What it's like in the Start and what comes to.

   During the day I ate, but watching what I ate. Too smooth or too small and you were choked. Too large and you found yourself trying to get whatever you just ate back up because it was teetering on which way it was going, if indeed it went at all. You panic the first few times then you start to realize that you must keep your calm as much as possible. Eventually you find the right texture, the right size, but it is still anybody's guess which one will not go, if indeed any.

  There is a pain... a horrible pain that is associated with each swallow even if it goes down right. Sweat breaks out from this pain. Never mind you've just taken more Tylenol than is safe for your liver, not counting the Tylenol Sore throat liquid you now drink, a bottle does well to last two days. It begins embarrassing to eat near your family and friends, yet you feel the need to, maybe they can help should it become lodged. Eating out... no way.

  As you lay at night you feel what feels like a flap covering your hole you breathe through and attempting to dislodge it is very painful and usually unsuccessful. I call this next thing the animal instinct. There is a survival instinct to survive. I  have this real fear that if I go to sleep... I  will not wake up. So I  fight to stay awake, cigarettes, soda pop, lights on, anything you can think of. As fatigue takes it's toll you begin to wear down. Yes, you will be scared at this point, no matter what your beliefs.

  I keep saying you, but let us place the proper perspective on this, it is not you but I. You still have a choice perhaps. I have made my peace with God on many nights, not just one time per night either for as you finally succumb to fatigue, it doesn't last very long, this cancer isn't done with you yet! I  awaken multiple times over the stretch of the night, usually from choking on my own spit (aka saliva). That leads to more pain, so now I AM up again for a while, scared to death making my peace with God should I not wake up or even worse, wake up only to partake in you're own gruesome strangulation death. Nothing says bravery like drowning in your our body fluids. This isn't a rare night folks... it is a common one. There is a snore that sounds more beast than human when you do sleep.  This goes on for weeks. By this time my right inner ear was killing me, often making my head so sore it couldn't be touched, even by a pillow.

   Now already there will be those that see the word God and get turned off by just the mention of His name, for those I pray for you. While I was ignorant, you are doubly so. But we in the end account for only ourselves, small children should be exposed to them, and others helped or harmed by us along the way. I am not writing this to save you, only you can save you with the help of God. That is not what I am here to do, rather to give you an idea what you may be in store for. We aren't even to the worse party yet, what pain those who love and care about you are going through. because you have placed it on them. .

If you dare, it will be posted later on.

We've still not been diagnosed yet.  

In The Beginning

   Throughout 2009, actually in late 2008, I kept getting colds and what seemed to be flu. Something should have lit up lights in my head when I got choked on 2 herbal pills I had taken for years. I just brushed it off because I dry swallowed it as I usually did. My throat was ripped so bad though it bled for a week, give or take.

  I ended up with a swore throat bronchial pneumonia. The doctor I went to thought it was my heart since I smoked heavily (2+ packs), ate what I wanted to, and had a heart attack prior. A Heart cath was preformed which proved as I had stated to her and her nurses, I was clean. Antibiotics were administered. It cleared all but my throat, but it did seem to improve it a little.

  Later that year I went to the family Physician. Some meds and very little change. This went on a few times only in the end, my right inner ear was killing me. Play special attention to that one. Each time less desired results were obtained.

    Finally I had had enough, so I had my wife arrange to get me into a Pulmonolgist. Now this wasn't a total loss, he did X-Ray my lungs, something that would be later used. Again though, offtrack with a sleep study. I was to wait two weeks until he returned from vacation to possibly do a sleep study. This is the only doctor I worry about since he is monetarily tied into the sleep study program. 

   By this time I was getting 2-3 hours of sleep a night, not all at once either. I was tired and cranky. My breathing was labored and my gag reflexes were diminishing. I would sometimes cough or sneeze up some blood, but rarely. I did however sneeze and cough up some rotted looking meat, and the frequency was intensifying.

   It was near this time I read a quote from an old Indian Chief that began to make sense in a very scary way. "It is easy to be brave... from a distance." 

   You see, I had been brave from a distance most of my life. People would say "Those smokes will kill you". My response was things I now revere as pure ignorance. Stuff like, well at least I'll know what'll get me. OR Somethings gotta get ya. There is where wisdom comes in. I now have attained the wisdom to know that these statement are stupid. I now know I wasn't  looking like a big man. I now know that these are the words of an addict. I now know these are the words of a loser. If you so chose to read on, you will see why. If not, keep telling yourself you sound and look cool, just let me know where your blog like this is or will be.  

The Beginnings and Forenotes

Well I pretty much am starting this out a bit late. One could say after the fact so some of this is from a memories that may have forgotten a thing or two. I am not a writer nor a trained man to do this, rather a person who wants to share so that you may gain knowledge of what could be in your future. Knowledge is less painful that Wisdom.
Knowledge can be obtained by reading from others. Wisdom is the knowledge you gain just after you needed it.
Only you can decide which you desire.

About the doctors and some others mentioned:

It is for sure that the many of the doctor's names will not be disclosed that made errors in catching this for that is the norm for Throat Cancer. This by no way makes them bad doctors or takes away from their caregiver skills and knowledge. People simply make mistakes and some diseases hide themselves so well that it is very hard to find. Sometimes it is that we don't accurately describe what is going on and sometimes it is that doctors don't listen, but but frequently a combination of he two. It is out of respect that I do not mention the  names of the doctors that this cancer slipped past. I still retain the belief that they are good doctors, good people, and had good intentions. From that I retain my respect for them.

Sooo, let's start this thing.