Tuesday, December 31, 2019

12-31-2019

Last post for this year.

   I had another infusion of KeyTruda today. The next one is in three weeks and I will meet the new doctor...again. She will be the third Chemo doctor since I've been going there. I am considering that one will be my last one, the bone pain it causes is intense at times. It is different than joint pain, a different ache.

 So this next year, God willing, I want a garden. It has been two years since I have had one and we are getting low on the food we put back. Greenbeans are longer than that, it has been about 2011 or 2012 the last time we grew them and we are getting low on them. Plus I want to know I still can and I know there is a way, I just have to find it.

   This could also be the last year we raise cattle. Our catch and load system isn't cutting it, beef prices are too low (except in the stores), and I'm not sure how long I can do it. The last calves we sold went for .80 to 1.20 per lb, in the store they are 4.50 to 8.00 per lb, and ours really are grass-fed.
Middlemen and grocery stores are the ones making money while Farmers get starved out.

I am shocked at just how much lung use I have lost and apparently dead lung tissue stays dead. I will have to relearn to use what I have left, but I can do it.

Happy New Year      

Friday, December 6, 2019

12-05-2019

  It has been a while since my last post, not much has changed. I'm still doing KeyTruda every 3 weeks, so that ain't bad. It takes about 45 minutes for the actual infusion but about 2 hours due to having blood drawn and tested. My only side effects so far appear to be intense bone pain. It isn't the type of pain like Rheumatoid Arthritis, which I do have, but a deep bone itself pain away from the joints. The other one is it appears to be aggravating this Non-Hodgkin's Lymphoma, but that could also be the weather. (I'm hoping).

  I still rely on O2 even though the cancer is gone due to the damage it left behind, scar tissue. Now it is funny but I never knew once the tissue happens it does not heal and regenerate, that part stays dead. I knew this with the heart but I didn't know it did the same with the lungs. So I will always be short-winded and due to that, I will always need my emergency inhaler and O2 nearby. I have learned to take it with me on the Tractor when I feed. If I exert myself I can tell it, but let me explain.

  I start to feel like I'm smothering, then my heart starts racing due to not enough oxygen. It does feel just like a heart attack and Denise tells me it could cause a heart attack, especially since mine is damaged from 2 previous heart attacks. The first one being the one that did the most damage. Aside from exertion, certain things can also shut my breathing down like straw or hay, especially wet. Dr. Rathfoot said my throat was about 1/4 the size opening of a normal throat. He said that if I walked in the ER and he saw me, not knowing my history, he would panic. That is from the radiation damage that occurred due to throat cancer treatments. The bottom part of one lung is pretty much shot, it was the one the tumor had cut off. I'm sitting here typing this out with O2 and after I finish I will do a breathing treatment.

   Having said all that, I do suggest doing conventional therapy. If I had gone with natural treatments I don't think I would be here today. I believe there has to be a better way but for now, there isn't, or at least nothing we know of. One has a choice of conventional or natural treatments, and there are those who have done natural and were cured, but they are few and far between. The best we can do is to make sure we find a good doctor and hospital with good people working there. Even with this, one has to realize that God is in control and has faith, not to be healed but there is a better place waiting. He may heal you and may not, but it is in our favor which it will be. I have no idea why he has been with me through 4 cancers and 2 heart attacks and I still stand while mom died from 2 cancers, perhaps what she was sent to do she accomplished. I know she is happy and I will see her again one day and that it was for her good, not a punishment but a reward. I had someone on FaceBook say I was an inspiration and strength to withstand what I have so far in 59 years. I thanked her for the kind words but said if I am strong it isn't my strength but God's she sees, as I can do nothing on my own, but He that I serve that strengthens me. One day He will say enough and I will be gone, and that is OK too. Meanwhile, I stand not of my own strength but of Him that created me.         

Friday, November 22, 2019

11-22-2019

  Well, I had an appointment with Dr. Rathfoot Tuesday. He scoped me then read the Pet Scan report and explained what congested means. Basically, that is the part of the lung tissue that is scared and unusable, and apparently, I have quite a lot of it. The scar tissue in my throat from throat cancer treatments has left my airway about 1/3 -1/4 the diameter of a normal throat. That is where my shortness of breath comes from.  That was in the morning. A quick Costco and Sams trip then we headed home to unload and begin part 2 of the day, the Keytruda infusion.

I had planned on putting this up Wednesday, I was worn out Tuesday, but I made the mistake of getting a sausage/egg/cheese biscuit at Wygles. That didn't turn out so well as I caught food poisoning and spent the day wondering which end to put on or around the toilet. Thank God it was a small one.

That put me to yesterday trying to get some stuff done I didn't get done the day before.    

Monday, November 11, 2019

11-11-2019 Pet Scan

   Today I had a Pet Scan done. The last infusion Dr. Ghandi said there was a lot of scar tissue, but the tumors were gone. I withheld this info as he was looking at an X-Ray that Dr. Anderson was looking at and Dr. Anderson didn't say that. So I was left to wonder if Dr. Ghandi was just being positive.

  The Pet Scan done today showed no disease, anywhere but did show a lot of scar tissue left behind. I am truly once again blessed. I go sometime next year for what I hope to be the final MRI of the brain. So far I've had 3 MRIs and none have shown the 2 tumors that 5 doctors saw. They say the medicine is better these days. I say God still works miracles and is still in charge.   

Sunday, November 3, 2019

Been sick the last few days. Tonight through was my first throw-up. Extreme Migraines and back and Bone Pain. As it stands now I'll probably have to get my Pain Pills refilled eventually. It has been cold and damp lately.

The wooly worms are dark this year signally a bad winter, and so it appears to be coming in like a lion.

I bought a Quadrunner from Mark. He said he was going to sell it since he will probably never be able to ride it again. I fear I may be the same.  

Thursday, October 31, 2019

10-31=2019

 Well, Tuesday I had another Keytruda infusion. I was down pretty much on and off Wednesday and partially today. It seems I have picked up an intestinal bug and another day (3 now) of Migraines, which I think is coming from my sinuses.

  Dr. Gandhi talked with me and says he believes the X-Ray done a while back show scar tissue and not tumors. Strange. I have a Pet Scan on the 11th which should tell the tale. I really feel my breathing is diminished. He also wants me to see Dr. Zic at Vanderbilt to make sure the KeyTruda isn't making my C TCL worse. I used to go to Zic, but he is a far drive, so I went to a doctor in Knoxville. He has insisted and Denise also agrees, so Nashville here we come. It will be sometime after yje 11th.

  I went to Dr Demonia today  (spelling ?) and he said my foot showed bone growth and that 3-4 weeks more of the boot should be used. He said I would not have to do a follow-up since it is healing and where it broke nothing but time can heal it. 3 Doctors this week and all bearing good news. I'll take that.    

Monday, October 28, 2019

10-28-2019 Another MRI

  We went this morning to Thompson Cancer Survival Center to have another MRI, they are still looking for the 2 tumors that disappeared. After the MRI I had a follow-up with Dr. Norman who had already viewed the MRI along with Dr. Clark.

  There was a very small shadow, possibly a ghost image from movement or some blood vessels knotted up, either way, both said they were not concerned with it. So I will have another MRI in 3 months.  

I go tomorrow for another infusion of Keytruda. 

Tuesday, October 22, 2019

10-23-2019

   Back up and down again from this joint and muscle pain. I took 2 Loratabs yesterday during the day, started out yesterday morning with one and again in the middle of the day. Tonight I took 2 then eventually took 1/2 another one and got a few hours sleep only to wake up in intense pain. Again I couldn't go to sleep and took another one. I've been using Livingwell Rub On Relief cream along with APC Cream in addition to the pain pills. Hopefully, in an hour or less, I can go back to sleep. This is turning out to be harder than the Chemo was.

  On a positive note, my blood work was good. 

Friday, October 18, 2019

10-18-2019

   This bone pain is unrelenting in its pain. I've had to use Loratabs every day. My foot seems like it is healing one day, then back to scratch the next, but that pain is overrun from the bone pain. The Tractor wouldn't start yesterday so I jumped it off. I should have noticed the ark when I adjusted the jumper but I didn't. I went to take off the battery today and the positive terminal just snapped so I went and found a similar one at O' Reilly's Auto Parts. (I usually don't trade there).

  I was going to do all of this yesterday and got into a Yellow Jackets next, stung my arm 7-8 times and the back of my head more than that. I  moved quicker than I knew I could, lol. I am fatigued, today a little worse than most days. I think I'm done for the day. I went to Food City Midnight Madness sale and bought some stuff, went back after talking with Denise to get her drinks (RC). Used the lawnmower and trailer and took enough feed to refill the barrels at the chickens, usually 6 bags of feed. I fed the cows and donkeys and sheep yesterday, I'm still not allowed to feed the chickens yet. I just not at 4:30 took a pain pill.        

Tuesday, October 15, 2019

10-15-2019

   I had a visit from a Nurse Practitioner Humana pays for. She is nice and it is OK to have someone else look in from time to time. I'm not sure exactly what else she does. This week and next are good, no doctor appointments. I got to tell her like I have the others that my foot was broke, she had, like the others, said it wasn't broke.

  I worked on 2 pens outside today, putting old tin roofs on them. This was day 2 of it and I worked until I was in major pain, so I stopped, but only after those 2 were done. I lack 1 big pen next. Tomorrow it looks like rain, thank the Lord. That will give me time to heal, the Keytruda is taking a toll on my body.
  

Tuesday, October 8, 2019

10-08-2019

    Well, I bragged too soon, it has all gone to Hell today. First was Denise calling me on her lunch hour and reminding me I had an appointment to have another Krytruda infusion today. I had worked on a couple of pens at the chickens and had managed to get muddy as a hog in slop. Enter bath 2 for the day. I checked my home phone and cell phone both, nothing. No missed calls. Then, later on, yesterday I see I have a new message on my voicemail. I listened then got curious and saw another number, it was the hospital computer telling my answering machine of my appointment. So I call and I do have an appointment.

   Now comes the strange part. I did bloodwork prior to my appointment, which is typical. Then usually I see the doctor except now you don't get to see him unless you requested to see him. Then I was told I'd see his associate... unless my bloodwork comes back good, then I'd go to the chemo part. I told her I have some prescriptions they need filling. She said I would meet with the secretary and could tell her. Strike 2. Two people working back there, neither of them seemed impressive. Still, Rachel assured me she would call me this evening with my follow-up date and call in my prescriptions. She said it had been a hectic day, which she seems to have plenty of. Well, the call never came, nor did she call in the prescriptions. In part I blame her, she does not seem to manage her time well. In part, I blame Dr Ghandi (took Dr Flanders place). Keytruda has plenty of side effects, especially with someone who has a T Cell Lymphoma. So why would the prescribing doctor not want to check? They say he is old school, maybe that is why MHH was considered a dog clinic just a few short years ago. I have gone from impressed heavily with MHH to... Not So Much.

    This stuff has caused pain in my joints and bones. I have R.A. already so I know about joint pain, this goes that pain times two. Right now I am debating two things. 1- Changing doctors and hospitals. 2- Continuing the Keytruda. I will know a lot more tomorrow when I give Rachel a call. I'm not expecting much.        

Tuesday, October 1, 2019

10-01-2019 Foot Doctor Time

   Well, I finally got in to see the Podiatrist today, Dr. Demoiny, a very nice guy. The staff and nurses were nice too. He took 3 X-Ray of my foot from different angles. I did this fall on August 8th and just now got in to see him, had another appointment but the referring doctor forgot to tell me he had arranged this appointment. I got a call and had no clue who or what he was or what it was about. I had seen Dr. Yaird and he said nothing could be done, end of the story. Dr. Flanders, however, did set up an appointment but his staff did not call to tell me. Humana sent a P.A. to interview me and she said it was not important and that story ended too.

   Once I found out who he was and what he was seeing me for I rescheduled the appointment, but October was his soonest he could see me. So today we found out why it is still swollen. He said they couldn't do surgery due to where they broke at, but that I needed to wear a special shoe or boot like thing to keep it immobile. He asked if it hurt and I said yes, I can feel my heartbeat in the big toe most days, especially if I walk a lot. I can't do anything for the swelling due to the blood thinners I'm on. I told him for the pain I take a pain pill, but only at night, I don't want to drive with that crap in my system so daytime is off. I have a thing on my IPhone that counts your steps called step up and over the last 7 days I've averaged 2.6 miles each day, some days more and some days less.

   Lately, too I've been thinking about having cows. I can no longer work them, Mark is in the same boat. Both of us have always had cattle or grew up with parents who had cattle. No more than they are bringing it may be time to say enough. Mark doesn't eat his cows but we do, so we will keep a few. My lungs may also have stopped me from raising chickens and Guineas.
      

Sunday, September 29, 2019

09-30-2019

  I have stayed in the last few days. The air is bad, really bad and the temperatures are breaking records. I'm not sure if it is lung cancer or the COPD, but I have to limit my time outdoors in this stuff.

  I go in October to see about my foot. It is still painful and swollen. Then later on another MRI brain scan. Then next month I see a new doctor on my CTCL (T-Cell Lymphoma), and they will tell if the ImmunoTherapy is doing more damage. Non-Hodgkin's Lymphomas are not curable whereas Lymphomas can be if caught early.

I tried weaning off the O2 like this new doctor wants me to and it damn near killed me 2 weekends ago. I am still healing from that move. If I could find out where Dr Flanders went and it was close I would switch.

Friday night I was asked to speak at a Gala for Dr. Rama. I had notes Denise and I prepared. There were 200 plus people there. We ate before and that takes O2. It was hot in there and even hotter on the stage and with a dress coat on. I walked on stage and couldn't breathe so I asked if I could remove my coat, which they said yes. This helped me breathe. I looked down and went off the paper for the hello part, then I just spoke from the heart and what was on my mind. I had people laughing, which is always a good thing. I gave Dr. Rama a lot of praise, well deserved praise. I told everybody that Denise was probably saying oh no when I started ad-libbing the speech.

  Dr. Rama got up and for the first time told the story of how I died on the operating table and about my Near Death Experience. He told about the 2 heart attacks I have had that have resulted in each time to 2 stents for a total of 4 now.    

  I'm going to guess my weight now at about 238-240 lbs, time for a diet. 

Monday, September 23, 2019

09-23-2019

  Well, I went on the hill to feed 2 rolls of hay and counted the cows and we are missing 4 cows or calves. I haven't been up there enough to point out which they were which I'm ashamed to say. I found 2 places in the fence that was down, repaired one until I can get back up there and fix properly, the other I can't., As I rode along most of the fence I bush hogged the field.

   A massive pine tree looks to have been struck by lightning about 10 foot up and came down and crushed the fence. I parked the Tractor at the top of the hill, it would not clear the trees to drive down it and walked down to take a closer look. I went down the hill ok, looked at what needs to be done, then walked back up. I was a tad winded but not bad. I had left the door open on the Tractor which let the cold air out. I got in the Tractor and became winded, my heart started racing as my body wanted more oxygen and my lungs just couldn't do it. I started driving and the Tractor rides rough, really bad rough and it kept getting worse. When it gets like this it feels like a heart attack, smothering and extreme pain in the chest.

   I called Denise and asked her to bring my Oxygen and she flew up the hill from the house which caught William's eye. He called me twice but I didn't answer, didn't have the breath to talk, I done well to call Denise. She got there fast but I was already getting better as the cold a/c blew in my face. Moral of the story, take my O2 with me, even on the Tractor. I came back home and laid down, it left me drainer and with a massive headache. This morning I am still healing from yesterday.   

Saturday, September 21, 2019

Sept 22nd, 2019

This was a week of doctors. It started off with the MRI and follow-ups from the 2 neurologists at Thompson Survival Cancer Center, then I met the new doctor that took Dr. Flanders's place, then Humana sent a Nurses Physician, then a follow-up with Dr. Anderson. I voiced my disappointment with Dr. Flanders being gone. So Friday I chilled out, bought some stuff for Saturday.

  Saturday me and Denise changed the Kitchen sink and Faucet out. I am ashamed to admit it but I had forgotten how to do that, the last one I remember installing was in 1982 when we built this house. Youtube was again my friend, lol.

  I found out this week that Dr. Buskell retired, so there is another doctor gone. Dr. Gandi wants me to see Dr. Zic at Vanderbilt to make sure this KeyTruda isn't going to kick my T Cell Lymphoma into overdrive. Seems I can't win for losing some times. Hopefully, it won't and this will destroy the rest of the tumors. I guess I owe a big thank you to Monsanto for Round-Up. (Sarcasm)    

I truly do hate to delete posts about holistic doctors from the comments because there are a lot of things that can be fixed with holistic medicine, that is not why I delete them. With certain diseases, yes, there has to be a better way and probably is, but we're not going to get it. Nobody despises the FDA more than I do, but going tribal usually ends up in death. I watched a friend, Russell Means who tried it and by the time he added conventional meds, it was too late.   

Tuesday, September 17, 2019

MRI again

Had another MRI done yesterday and the big tumor is still missing but the small one is has returned. I also had an appointment with the Neurologist and the Doctor of the Gamma Knife. They want to do another one the 28th to see if the small one is a glitch and possibly a bunch of blood veins. They said that they both felt like the big one wasn't cancer as previously thought but a Stroke I had. At this time a stroke sounds better than brain cancer.

   My Oncologist (Dr Flanders) has either quit or resigned. There was another doctor, they said he use to be the main Oncologist before Flanders. He wants me to see Zic at Vanderbilt to make sure the KeyTruda isn't reacting with my Non-Hodgkin's T Cell Lymphoma and making it worse. So if I get this straight the drug that can kill the lung cancer can kill me by activating the T-Cells and strengthening them. At some point, this has to be weird. Who knew using Round-Up would cause that.   

Wednesday, September 11, 2019

09-11-2019

   I worked in the Kitchen today on the sink, put 2 drawers in the blanks under the sink. I've wanted to do that for years and found a kit. It had a diagram to measure by that was close. Then I emptied the water tank and filled it with water so they will have fresh water in this drought. Fed Dora and the Llama some Pears too.

 

Tuesday, September 10, 2019

9-10-2019

   It has been a while since I last posted. So far most things have gone good. What I have noticed is that in the heat I have a hard time. The new Puppy (Zoe) has been a handful. She ran away the other day and I went after her without O2. I caught her and carried her back to the dog cage in the basement and had to stop 4 times on the way. I crawled up the back steps and luckily I had left the O2 machine running.  I don't know what my heart rate got up to but after about 10 minutes of breathing it in, sitting up (laying down was impossible for the pain), I checked and it was 154. I ended up with a migraine for 2 days and slept the whole day on Saturday. 

   Today I went to TSC, was headed for the CO-OP but the Interstate was blocked and traffic was bad, it looked like Sevierville and Gatlinburg traffic, so I diverted to Newport. Again I had not taken my Puffer or O2 with me. I got in the store at TSC and loaded a bag of chick starter and a Mineral Block for the Donkeys & Sheep. I was winded and thought for a second I would have to just stop and sit down, but I didn't. I pressed on slowly to the register and then on to the truck. Unloading to into the truck left me winded again, but I took my time and was able to return the buggy like I always have. So I get home and unload the salt, here I am again.

   I don't get to feed or take care of the chickens and guineas, Denise does that, and that makes me feel useless. I do wash the dishes but it is not the same. In the heat... it is not my friend.  

   I go the 16th for another MRI of the brain then to see the Neurologist and make sure the tumors are still gone. Then the 17th I have another KeyTruda infusion and the 18th they (Insurance Company) have scheduled a Nurse Practitioner for a home visit. I'll show her my broke big toe that is still swelled twice the size it should be. I did it on August 8th. 

  Eventually, they will do a CT to see how the tumors are responding, but I'm not sure when that is. I'm hopeful that it will be good, but it doesn't feel like it is.    

Monday, August 26, 2019

August 26th 2019

We went today for a follow-up and the first of my Imfenzi infusion which the insurance sent us a letter saying it would not pay for Imfenzi but it would pay for Keytruda. Keytruda is approved for Stage 4 Lung Cancer where Imfenzi is only approved for Stage 3. They used my already installed Port, kit took about an hour and a half this time, next time will be about an hour.

   The Radiation doctor, Dr. Anderson staged it a 3B since there were no brain tumors found and the sack that surrounds the lungs was empty. Dr. Flanders has it Stage 4, so who knows.

I take this on every 3 weeks and will do a year and possibly longer if needed. The list of side effects is scary but no scarier than Imfenzi was.       

Tuesday, August 20, 2019

August 20th 2019

   Well, it has been a while now and the Esophageal Spasms have decreased, not stopped but less than they were. My back is healing well with the use of Bag Balm and I can't remember the name of the other one, but they work. I should have used them this whole time. You MUST make sure before a treatment they are washed off or else the radiation will be much worse.

   I'm slowly gaining my appetite back, I still get sick if I eat a lot. I've been reading on this Imfinzi medication that I will do every other week for a year and it scares me, the list of side effects are as long as chemo, maybe longer. It ain't over yet.

  The CT showed the right tumor that was 6.4 cm is now 3cm and dying. The right side went from 2.8 cm to 12 mm. Imfinzi is supposed to complete the death of the cancer tumors if it doesn't get me first.

  My big toe is still as big as 2 big toes and painful to walk on. I've been rubbing the pain cream on it and it helps.

We took the calves to Newport Livestock so we could buy the rest of the hay we need, but that was a pipe dream. They brought little and way short of what we were expecting so I think I'll go back to Mascott, but when I'm able to help with the loading of the cows.

   Denise says I'm still to avoid contact with people, not happening, lol. Tomorrow I'll unload the hay.

   And today, I am drinking my first Dr Pepper in weeks with making it flat.    

Thursday, August 15, 2019

August 15th 2019

   I've been doing the breathing treatments and they seem to be working, better than I thought they would. My lungs are opening up and I'm coughing up some of the fluids and blood-tinged spit. That said my breathing is still labored. Without O2 my stats run sometimes in the 80s but most times in the lower 90s with my heart rate going fast. I start that next leg of treatment soon.

   Tomorrow I'll pay Mark and Zac to catch and load the calves. I'll be there but not as active as I usually am. I'll work the gate. We get them loaded and sold that money will buy the last of the hay. Hopefully, we will have some leftover for gravel but the market ain't good on cattle here. The only people making money on cattle are the sales lot and grocery stores. 10 years from now small cattle farmers like we are will be driven out and replaced by Factory Farms where they will say how much and how they want to raise their cattle. Mark's hip is gone and I'm not in good shape, so we're both considering a lifetime without cattle.   

Wednesday, August 14, 2019

August 14th 2019

  Tuesday was my last radiation treatment so I get a break until the end of the month when I start the new drug, which I'll do for a year.

  Dr. Anderson said he heard the congestion in my lungs, which I already knew it. I told him it was either sinus or pneumonia but it felt like pneumonia. He just kind of blew it off and when Denise called his nurse she said nothing even remotely was discussed. So one of the doctors Denise works for setting me up for a chest X-Ray. I was right, fluid was gathering and it was the start of pneumonia. So she called Dr. Flanders nurse who was defensive and wanted to know who ordered the X-Ray and was rude. Anybody that knows Denise knows that won't last long. His nurse asked for the X-Ray and Denise faxed it to her and demanded a call back after Dr. Flanders reviewed it. Denise said she was nicer when she called back. They ask that I increase my breathing treatments.

   As a doctor, if I count Dr. Anderson's staff they rate a 4 star but that is raised up because of the people working there. Every Monday he examines you yet not 1 time did he examine my back. I have 3 places that are burnt so bad they are bleeding. Most radiation doctors are like that, but why?

   Why would Dr. Flanders nurse be on the offensive? Is it always going to be this way?

   Note to Doctors: Most of us know our body and when something ain't right.     

Thursday, August 8, 2019

August 8th 2019

   Well, another day another fall. I stepped up on a step and missed, not sure how that works. M y left foot is black from bruising. Thankfully it didn't break. I showed the ladies in Radiation the place on my back where the radiation has broken through the skin and began to bleed a little. They said that wasn't unusual at this stage of the radiation, I have only 3 more left. Finally, the bleeding has almost all the way stopped from the scaring over. Will this cost me in the long run? Probably.

Humana called today and wanted to know about my Colon, if it has been tested and how long ago. I ask the lady "seriously, with all I have going on". We both got a laugh out of it, she said she had to ask. That is getting almost as bad as the Liberty Mutual commercials, except Humana is at least honest.

The Esophageal Spasms continues full force. I have added Nitro to the list of what stops them.     

Wednesday, August 7, 2019

August 7th 2019

   Right now I'm only doing Radiation, but the markers and numbers have changed. I'm bleeding less, almost stopped completely. I asked what the CT showed from last week but never got a straight answer. I'm not sure what that was about. My back is painful and red, very red. The radiation is taking its toll and maybe that is what is suppose to happen.

  So today I messed up, taking on way more than I should have. My heart rate is still over 100 and will not come down. I washed the dishes like I do pretty much every day, then it hit me, I need to do more. So I took the lawnmower and mowed back at the chicken pens, then over at the Tractor Garage. These are things I normally do when I feed the chickens, except I'm not feeding the chickens. I got the lawnmower stuck and decided to unstick it with the tractor. I was using the front spear instead of a rope, mistake 1. The spear went through the grill and almost into the engine and also the hood broke. Then I pulled the tractor close to the garage door and tore another hole in the door... mistake 2. A friend asked a while back if I wanted firewood, sure I said. Well, he brought his 14 ft trailer full of wood and we unloaded it. Mistake 3. Then Mark (my cousin) called and wanted to know if I would buy his hay rake that the tongue broke off and needed to be welded back. Sure, so he brought it back here and we put it in the barn lot.

  I have 4 radiations left and I thank God for that. I got about 2 weeks before starting the Rx called Infinsy (spelling ?). Next week I will get Mark and Zac to load my calves to take to the market. They are not bring well but that is just how things are. I still want to catch them up, they know me and the way things work.

   Oh I am sooo paying for this day. :)      

  

Tuesday, August 6, 2019

August 6th 2019

  I had a follow-up with Dr. Rathfoot today and it went well. He said those 2 tumors disappearing was a miracle. After the appointment, Denise brought me home and I went to Radiation, only 5 more left to go to. It will be the end of the month when I start Infinsy? I have to do that for a year every other week.

  My bleeding is mostly just spotting now and I seldom run a fever. Denise still doesn't want me in public since my blood work is probably next to zero now, the last one wasn't good at all. I'm still tired but I'm finally pulling out of a 3-day slump. Hopefully, from here I will grow in strength. I did walk to the mailbox one day, about 400 foot.     

Saturday, August 3, 2019

August 4th 2019

   I woke up at 5:30 this morning and by 6:30 put my teeth in and ashed the dishes. I felt extremely tired so I went back to bed. I slept until about 4:30pm waking up only long enough to take a pain pill. I washed my hair and removed the bandage today, I have 4 holes in my skull from the frame they put on me. Seeing how the tumors were gone it was worth it, I do believe a miracle just happened. It felt good to bathe and wash my hair, what little I have left.

  Today and tomorrow are the worse two days after chemo Wednesday, so I was expecting this. It has once again hit the kidneys despite my increase in water. I'll go back the 16th to have another MRI done and make sure they are gone forever.    

Friday, August 2, 2019

August 2nd 2019 Tumors AWOL

So we went to the Thompson Cancer Survival Center and was going to burn out 2 tumors that 3 doctors saw. They put the basic frame on my head, screwing it as best we could figure 1/4 inch into my skull. The shots hurt and there was pressure even with being numb that was a dull pain which didn't last too long. I was ready to go to get their extremely accurate MRI. I laid on a table and the thing on my head locked into place and back into the MRI I went.

   That thing was loud. For the surgery you can bring CDs to listen to, I brought Casting Crowns and Mercy Me. I never got to listen to either of them as the Surgery did not happen. The doctors could not find the Tumors. They simply were not there. I take it as a miracle. So I came home wrapped up with the bandages covering 4 screw holes in my skull. I'll take that any day.   

I'll take that any day.

Thursday, August 1, 2019

August 1st 2019

  I have been meaning to write this a few days ago but just haven't. Already I have watched everything worth watching on TV, including Netflix, Kodi, and Prime. So this will be a summary of the last days. Since my last post, I was in bad shape until yesterday when I finally felt decent. Maybe too much so since I put the electrical boxes in the Grillzebo. That didn't go over well.

  I have noticed with the heat I stay high on my O2 levels, sometimes as high as 95, but my heart rate is always about 120, sometimes 130. Today they will switch me back to Metropol from the other one that also controlled my BP as it drops my BP too low. We're talking passing out too low. Cardivol I think the name is. I lost weight now I'm gaining weight but my belly doesn't show it so I'm thinking it is muscle. I weighed 235lbs, up in just 3 days from 231lbs. It was a different scale.  

  I looked at my blood work online and my Plalets are extremely low, and that was before yesterday's chemo. I'm sure they are even lower now. I had a temperature this morning Denise noticed. I'm off balance somewhat or as mom use to say, Swimmy Headed. But today I felt good and today's radiation made 25, only 8 more left unless he adds some. So I added a rail in the Grillzebo to hang some stuff on, hopefully, Denise won't notice. I was going to go by there and she said no, 1 sneeze or 1 handshake could land me in the hospital, so I didn't go.

We finally got a replacement for Puppy and may have figured out what might have killed her. There have been Bears all around us lately. I ain't past shooting one and ain 't that sick. We ended up with a Puppy and Taz approves. She is sweet and smart, always chewing on something and always exploring.

Tomorrow I am nervous about and oddly enough more about the pain that will come with the Gamma Knife. I have no doubt that they can safely burn the tumors out but just in case I gave Denise instructions that if I have brain damage that they cannot repair or will not repair in time to not save me. I have no desire to be a burden on anybody, especially my family.

   Humana sent me a price list of what I need to pay and what I didn't after I called and asked them about the 1984.00 bills UT sent me on the Biopsies. I didn't owe a penny of that. They billed the codes wrong and all they needed to do was resubmit the procedures under the correct codes.



Saturday, July 27, 2019

July 27th 2019

   This is a morning post. I must have wanted something to tell them about subconsciously with the fall yesterday then last night I fell out of bed. My bed strikes me waist high so it is a long way down. Going by the bruises and swelled up places I managed to hit my forearm, hip, knee again on the lower wood rail. More bruises have emerged from yesterday's fall and I pulled out some wood that had went in the arm, but maybe I already told that. I am still out of balance, vertigo, just not as bad as yesterday.

   So far this morning I could not go back to sleep but I did blackout a few times, never for long so I feel like I haven't rested. I went outside and checked the birds, cats, and donkeys from the yard. As soon as we get more feed unloaded off the truck I will take a Mineral Block and a Sulpher Block to the cows. I also checked the Aquariums and fed the new fish I bought yesterday. I will probably try to vacuum out 2 tanks today. For now, I'm going to sit down before I fall down.    

Friday, July 26, 2019

July 26th 2019

  Well, today was a tad memorable... maybe. I saw a guy that according to Denise when I told her I found out what kind of cancer he has told me for the third time. No wonder he was in such a hurry to walk away at Harbor Freight. Odd place for us to meet I know.

  I went to Radiation today and asked one of the ladies that works the machine and lines me up it about Radiation Cream. I showed her my back which Denise said last night was bad and that I needed to ask. Shocking that I actually remembered to do it, but I did. She said she had set up where I could meet with Dr. Anderson 's Assistant (not what they are called but hey, I'm doing the best I can), after radiation if I could just wait a while. I asked her what the stuff was, thinking it was mainly a cream that helps the skin with the damage of the radiation. For those who have never had it, it burns and leaves your skin looking much like a sunburn, feel that way too. This has Lidocaine in it to numb the skin, but I don't feel the skin. I feel the bones, the muscles and for sure the spasms, just not the skin. While that may sound crazy it isn't. I have a Non-Hodgkin's Lymphoma first diagnosed officially 7-1-2009 as CTCL, I have the Mycosis Fungionoids. That stands for Cutaneous T Cell Lymphoma, you probably saw that on the news. Don't let nobody fool you, it gives you no moment of peace and yes, it is painful. So I explained to her the deadening of feeling from the skin, or maybe just learning how to ignore it until it hits a certain pain level, who can say for sure which. To show her I showed her my knee, complete with 2 patches of skin drug off from the morning fall. In the end, I told her I would just wait until Monday when we met with him since I was in no pain at the moment. It was nice of her to set up the meeting.

   So about this morning. Dr. Flanders always asks if I had any falls and this time I can say yes. I went out this morning to check the status on the Guinea keets that just hatched out and were with their parents, the cats here stalk them. The cats had, as I suspected, moved in around the Guineas in an attempt to separate them from the keets. I hissed loud that that made all but one cat retreat, but she wasn't going anywhere. I saw some rocks and grabbed a handful and tossed them towards the cat. Still, she didn't move. So I went toward her with another handful and this time I would throw them harder. I know the small fence was there, it has been there two years now, yet I failed to acknowledge it. I simply forgot to step over it, didn't even try. Was I too focused on the cat or just didn't connect the dots, either way, I went down. I landed hard on the concrete pavers and came down hands then forearms first, giving the crashing shock some buffer. I slammed the right knee and knew I had damaged the skin on the knee. When I landed I first had to check to see what was damaged and how bad. My arms, much to my surprise had sustained little to no damage only showing up hours later as bruises. I saw the knee and skin removed, I was ok though. Then I started to laugh at being so stupid. I came in and got back on the computer looking at receptacle covers and from 8:30am- 11:08am I must have fallen asleep or blacked out.

   The rest of the day I just ran. Harbor Freight, Rural King, TSC, Food City. I stayed busy today just running errands. Late tonight I felt something hard as I talked on the phone and in my arms was a piece of wood. I scratched it out and will attend to it in the morning.           

Thursday, July 25, 2019

July 25th 2019

   Yesterday was rough, and I mean rough. I have paid all week for Saturdays running, but it was worth it...I think. It has been a rough week. It is all but impossible to take the Boswellia for my R.A. so my fingers are getting stiffer and stiffer, which makes typing and damn near else with fingers hard. My other joints sound like they are breaking, making more pops and cracks than a drummer at a rock concert. My O2 levels have been good and last night they went from good to fantastic, 97-100 !!!

  This morning Denise found me bent over my bed, which strikes me about waist high, in a cold, heavy sweat asleep. She asks if I remembered her waking me and giving me my pills this morning, I did. I also remembered her fussing at me telling me I wasn't coherent enough to take a bath and could drown. Truth be known she was probably right but an hour after she left that was exactly what I did.

  Yesterday morning I spit up blood on the Island top which lucky for us is marble. When I spit up anything it is almost always a full mouth of blood, sometimes mixed with puss. Thank you, UT for doing that. Then  I apparently visited the Stove which had plastic on and turned on the Plate Warmer which effectively melted some of the plastic. Thankfully our stove has the glass top. I did something else too but I don't remember what.

   My memory is really, really bad. I'm not sure if I've added strokes to the list I already had or if it is chemo brain, also called brain fog. I went through the line at Pals and wanted extra Ketchup but it came out Extra Frenchie Fries. The whole gang in the bc that heard me stopped and looked at me strangely. I felt so embarrassed that I corrected myself as soon as I said that and corrected what extra I meant to say but offered no explanation why I said that. Even writing this I has to stop and get the wrapper just to see where I went. I seem to repeat that last thing I see or read and that is what comes out. If there is nothing that throws me off it will be words I know, names, places, movies, or common stuff. If I try and fish for what the word is I'll usually ask and if I don't ask please don't offer or start a long list of words you think I meant to say, that tends to piss us off who have that condition. If it is another stroke I guess it is permanent, if it is caused by the chemo, maybe not. They have a less serious-sounding word, TIA, but it is still the same thing.

   So yesterday was chemo day, number 5, only 1 more to go. Next Wednesday I will have the last of these chemos then wait a couple of weeks because that Friday I will have the Gamma Knife and they will burn the 2 tumors in my brain. Hopefully there has not been more surface and hopefully, they will not be cancer. The whole staging number on the lung tumors depends on what the tumors are, and that will determine if I can beat this or not. I talked to a few people, maybe too much, lol. I learned a whole lot, like these flickers of stoppage in my hands and arms is caused by Gabapentin, something I had no clue about. Gabapentin is both a blessing and a curse. It allows me to walk with this Neuropathyand damages it seems I learn about daily. I would not have known this if I had not talked "too much" as you said. Talking to Amy's sister gave me an idea what to expect Friday with the Gamma Knife. Seeing how they will be burning tumors in my brain that may not have seemed relevant to you but it was to me. It is like the muscle just stops and if you read this Denise, yelling solves nothing and not using the muscles also solves nothing and is impractical. Your patience is highly needed here, learn to have some. While it may seem like I'm not trying I am. It is embarrassing when I do drop something or fall asleep at nothing and while it may seem like I don't care, nothing could be farther from the truth. If you think it embarrasses you, try walking in my shoes, then add your attitude that does not look well from where I set nor to those onlooking. While I do not desire sympathy, I do desire understanding. No, you don't deserve this. That said, where some say they don't "why me" I am fully remembering things I've done and so it becomes, "why not me", that is where we differ. I just pray you never end up in this battle for it is one thing to onlook and cheer on, push on, and judge, it is another to live the battle.    

   Let's also go back to something I started to tell but forgot to tell, Esophageal Spasms. These are bad, very bad. They give me Swish & Swallow first, also known as Magic Mouthwash. This does practically nothing. So Dr. Anderson also prescribed Lidocaine Viscous, which effectively numbs pretty much everything it touches. Again, does little to stop the pain. This seems to be more nerve and muscle damage than what the 2 are corrupting. I have found that Baclofen and a 10mg Lortab taken before that will stop about 40-50% of it. It still feels a lot like a heart attack but more a butcher knife sawing from to back around the heart and across the back shoulders. Scary to think that last night a Nitro Pill killed it, or what was left of it. This is how I will lose weight, painfully. I would like to get down to 200lbs, just not this way.

   I walked into the yard this evening to count the Geese, we have a lot of feathers and it appears someone was caught and ate. I could not gain my balance no matter how hard I tried. Funny, I went to Lowes and I was fine, was also fine driving to Radiation, walked out the door a few hours later and everything went wrong. Then I bent over to grab a very large weed and it was all I could do to keep from falling backward, then sideways, the front ways. I felt like I was going to pass out, which is a weird, scary feeling on its own. I am still swimmy headed sitting here and fear to get up, I may pass out or fall straight down in a blackout, which I have done many times. To go out unexpectantly like a lite is a scary situation. My worst fear is that I may cause harm and perhaps even death to someone else. I have this fine line I must use and take a strong look at each minute of the day and base what I do on that. At times it almost becomes more than I can handle.        

 
                  

Tuesday, July 23, 2019

July 23rd 2019

   Well, you can tell I haven't been knocked down much for long. During the throat cancer chemo, I would almost crawl to make a post. This one takes its toll but nothing like before and I have kept my hair this time, or at least what isn't relocating.

  Saturday me and Denise went everywhere despite Denise's warnings that I could get exposed to something and I would pay for this day. We ate at Tx Roadhouse early, before it got crowded. I had a voucher for a free meal and another one for a free Blooming Cactus, plus we had a gift card. Basically, we ate for free. That was the best ribs I have ever had. We went to Lodge cast Iron store in Sevierville and yes, I bought a skillet. Bass Pro to take back some overpriced under quality pants and swapped for some decent made cheaper pants. The aftermath of chemo usually hits Saturday and Sunday but this time it was Sunday. I slept most of the day and again on Monday, about the same. Today is Tuesday and I have not been able to build any strength up so I am moving slow.

   I got a bill from the ones that did the biopsies and read online to ask the Insurance company what if anything I owe. The bill said 1984.00  but when I called the girl on the phone said 500.00 something. Humana said I owed nothing and if there were any questions they could call and talk to them. The lady on the phone said to ignore the bill and she would have to send it up the channels and let them figure it out. That is something worth remembering. How many people just pay or set up payments without questioning if they owe it.

   There are fatigue and a dead ache that is always here now,  but still nothing like I expected, but enough so as to slow and even stop you in your tracks. Sharpe pain when eating anything that isn't room temperature and eating slowly. That said, I only lost one pound. This is the part that makes you want to scream. Too tired to do much yet too bored to just sit. The bleeding is as it was, heavy most days. I think he screwed something up with the biopsy.        

Friday, July 19, 2019

July 19th 2019

   I skipped a day, yesterday was rough. The chemo hit a day early and it was probably my fault that it did, it hit my kidneys. The pain is excruciating in my chest from what Denise says is Esophageal Spasms caused by the radiation. Given my throat is already compromised from the radiation that was in 2009-2010, I don't have a lot of play left. It can only be described as a hot Dagger going from my front of the chest and through the back and eventually working down the top part of my lungs. It is enough to cease eating and drinking. They gave me a script for Swish & Swallow, which has different names, but it is like pissing on a Forrest fire thinking it would put it out. I told Denise it just doesn't work so I've added taking a 10mg Lortab and a 20mg Baclofen prior to eating. That helps but it still doesn't numb anything enough. Carbonated drinks like Dr.Pepper are a no go and water and Tea are only tolerable at room temperature. Something needs to change. I told Denise I was considering taking advantage of this and losing some of the added weight I have. She said it was early in the game and that weight loss would probably come later like it or not.

   Back to the Kidneys, I drank a Dr.Pepper while chemo was going on and afterward, no water, no Gatorade... and that was a big mistake. I was excited about getting to drink a cold Dr.Pepper and should have been more excited to have some common sense and drink water, Gatorade, and Tea. As yesterday went along I drank tons of water and Gatorade, not to mention Tea Denise brewed. This has turned the tides so to speak. At one time yesterday, I sat for about 30 minutes crunched over the trash can waiting to toss my food up. After that eased off it left me weak and tired, dozing off a few times. My sleep though comes in spurts these days.

   I went to the Brooder room and fed the cats then decided I'd feed the 2 Brooders of chicks. I had washed the dishes and watched some TV, then boredom set in. There just ain't much good to watch these days I'm over the F-bomb and other colorful words being used, over the naked scenes and "romantic scenes". Can someone just make a clean good movie or TV show? In the process of feeding, I got cut on the arm. Annie & TC were the first ones back here, Annie is now an RN, and she asked what cut me and was it clean. Well it is in an old Brooder, rusty wire, and that is covered with chick poop, so probably not. Then Denise came in and started on how I could catch something bad from the filth. I dropped the bomb I had also gone into the big Garage and put the car parts up I had ordered. It is full of black mold so probably not a good decision. Funny what boredom will do.

  The thing I find oddest is that I have now had four chemo treatments, I take one every Wednesday and so there are just two left and while I don't feel great I don't feel like I did with the Throat cancer chemo of 2009. I did notice today that my skin color has got that "chemo color". There is one more thing that has happened that is new, I get cramps and not like usual cramps. They are more like Spasams where the muscle gets hard as a rock and you can feel it by the touch, see it too as it balls up. These hurt bad.

   I missed my Aunt's funeral, the last of eight people that raised me. I missed seeing some of my cousins, Dorothy's children, that were like brothers and sisters to me, some I will probably not get to see again. I went by early at the Funeral Home to pay my respects before the crowd came in. I think that is one of the worst things about cancer, the alienation. The other thing is you feel so bad sometimes it makes you want to lash out at others, and that is just not acceptable.

   There is a man and his wife today, we made friends a couple of days ago. I am not sure his age but I'm going out on a limb here and say the 60s. His son is building him a 37 hot rod and from the picture looks good. He has small cell lung cancer. He and his wife are very upbeat, friendly, and positive. Today... not so much as his news was weighing heavily. They told him they can slow it down but they can't cure or remiss it. I told him about Charlie and how he has small cell lung cancer too, had it for about four or five years. When I was leaving to come over he was weed eating his yard. This seemed to lift the world off his shoulders and his wife smiled and said: "I told you so". What I had told them was the truth, what I didn't was I can't figure out how Charlie can do it.               

Monday, July 15, 2019

July 16th 2019

   I met with a doctor that was taking the place of Dr. Anderson, don't remember his name, but he was nice. It blows my mind just how many doctors I have met or interacted with at Morristown Hamblen  Hospital that has been top-notch doctors. That and the doctors at Thompson Cancer Survival Center are just as nice. I must be old because most look young to me now.

  Thompson Cancer Survival Center called and though a date is not concrete yet it looks like August 2nd is when they will go after the two in the brain. This will come at the end of the radiation and chemo so it will just fit right in. They are not sure the two are cancer but they will burn them out either way.

I have developed a sharp pain when I eat due to the radiation on the esophagus which is causing spasms when I drink a carbonated drink (Dr. Pepper) or anything that is too hot or too cold. The doctor today gave me some Swish & Swallow to use which should calm it down so eating will not be so painful. I've also developed some bad night sweats, except some, come during the day. I stay tired and I've been sleeping a lot lately. Tomorrow I will do bloodwork and then it will be gone over Wednesday before chemo.     

Sunday, July 14, 2019

July 14th 2019

   Tomorrow I will see the doctor before radiation as he sees all his patients on Mondays. I will address the debilitating pain that is in my upper chest and throat. I cannot afford a smaller windpipe due to the damage the last radiation left behind. This started out only affecting carbonated drinks but has now moved to anything too warm or cold or swallowed fast.

   Today I slept on and off all day. I am learning to listen to my body. No fevers today so that has improved. Lots of night sweats that will wake me up with a dry mouth due to dehydration. It is like fighting an uphill battle.  

Saturday, July 13, 2019

July 13th 2019

    Last night and later yesterday the chemo hit home hard. Denise came in and said I was on the floor with no O2 attached speaking incoherently. It took a while to get me up from the floor and argumentive. So what do I remember...

   I remember being on the web, eBay and Amazon tabs open and looking around, probably a Youtube tab too as I am looking to see how to install a camera system her. I remember starting to take a Lortab for breakthrough pain as the top of my shoulders and front of the top of the shoulders were in major pain. Since it was probably the diaphragm going into spasms I was also considering the Baclofen as it ceases the spasms brought on not from the chemo but from the Steroid itself. That was the end of my memory.

  We talked with Dr. Flanders and Denise mentioned I was having hiccups. These are not regular hiccups but rather dangerous ones. He said there was a patient who had not slept in 3 days once but failed to mention them. Turns out Baclofen, Gabepinten, and another drug stop them. I had the hiccups the 2nd chemo but no pain, not sure I mentioned it, but this one has no hiccups and intense pain. It could be that I'm keeping enough in my system to avert the hiccups but not enough to avert this pain. It feels like someone has inserted a large knife and cutting through bone and meat almost all the way through.



   Annie & TC came back here and offered to stay while Denise fed the chickens and watch me, but I had stabilized by then. Funny how neither one has called to check since they left and it is now 4:07pm the next day. It is back this evening but I will not make the same mistake I did before. This chemo hits not as hard but it hits later than the throat cancer chemo which hit the next day and lasted longer. This morning I was at my computer desk in my bedroom when suddenly a flash of light like a camera flash went off and I came to just in time to avoid crashing into the desk. TMI? Denise had gone to her mom's to fix some things and I was here alone, that woke me up and said get your butt to bed. I slept until 12pm. My system is taxed I can tell. I am weak, off-balance, in pain, tired, and I am still bleeding a lot thanks to the biopsy from UT. The bleeding has never stopped and when I told the Dr. at UT it hasn't even slowed down his answer 2 times was give it a few days. A "few days" has now turned into over a month with no signs of ending soon.             

Thursday, July 11, 2019

July 11th 2019

   I skipped a few days there. July 10th I had chemo again and honestly, I just didn't take time to write yesterday. Chemo 3

   Since I was disoriented two days last week from the Advan (spelling ?), Wednesday and Thursday, Friday wasn't much better, I decided to skip the stuff yesterday. The chemo treatment isn't as long as the Throat cancer chemo nor as hard-hitting, so I figured I'd see if I could omit it. I asked the nurse if I could request it as the treatment went on if I wanted it and she said I could since the Pharmacy already sent it up. This was a game-changer for me as I kept alert and mentally focused, that dazed and confused not only left if never appeared.

  Now, back to today. I had an appointment with the Neuro doctor today. They have a very nice staff and I liked them all. He wanted the CD from UT so that was the first thing to gather up, off to UT we went. We got the CD and print out of the doctor's notes that read it. When we went we took the CD to the doctor who viewed the images. He said he wasn't for sure but he does not believe they are cancer. He will review along with a team to see and if they aren't 100% sure then they will use the Gamma Knife to remove them, notice I said them. He spotted a second one. He also spotted where I have had several TMIs.

   Once they start the process where they get in they will remove anything that appears to be trouble or possibly is cancer, then they can look at it closer. I am all for it, better safe than sorry. If these places are not cancer then it will truly be a miracle.         

Sunday, July 7, 2019

July 7 2019

  I skipped the 6th and with good cause, chemo finally hit home. I skipped going with Denise to get her oil changed but was pretty adamant about going to Yoder's Market. Misty was waiting here when we got back, it has been a while since I saw her. I think it was good that she saw that I wasn't like the others that have had cancer in the family.  I felt good while Misty visited.

  As the day went on I began to get sick, chemotype sick. I had fever after fever and was soaked in a cold sweat in between. I slept on and off waking only long enough to go to the bathroom. Denise had ordered me a Wedge Pillow and that made being in bed one hundred times easier and a lot more comfortable. I went through it all, diarrhea, fever, sweats, and almost threw up... almost. Denise has taken extremely good care of me.

  I slept until today about 10:40am. The chemo has taken its effects now, Dr. Pepper tastes funny. Some things I like do not taste good and some things I don't like I do now. My mouth is numb which is a weird feeling, reminding me of the past. All this sounds bad and yet the bight spot is that for the first time, wearing oxygen, my o2 stats get as high as 97%!!!

   So tomorrow we will celebrate my birthday not a few days before like we'd planned but on the actual day. I will have made it to 59, something that seemed too far away to experience.

   Having chemo on Wednesday seemed strange at first but upon seeing how things seem to work with this chemo I believe it is best. I have pills to take for the first two days out of chemo and perhaps that is why the first two days aren't like the first two days of the Throat cancer chemo. That makes the prolonged effects hit on the weekend, and that is when I have Denise here to help and watch over me. 

Friday, July 5, 2019

July 5th 2019

   Today's radiation went well. I complimented the team on how the care they gave was top-notch and, extremely appreciated, yet I fell short in making that point. After the next few times, I will begin to feel them, more and more each time. I remember the chemo was Hell last time but the Radiation was worse. Chemo gets rough quicker but Radiation is the slow and steady runner. From this point onward I will need to stay on my toes. I went to bed with a temperature of 99.5, which don't seem like much but fevers can peak in a matter of minutes when doing chemo and radiation and become dangerous. That is what landed in in UT in 2009 for over a week.

   I looked around tonight as Misty and I exchanged texts and suddenly it occurred to me that this bedroom that was once my Sanctuary has so become again. This time, however, so far I can come and go, something I couldn't do after 2 Chemos. Still, it has become once again my safe haven. You have a lot of time to think in here, maybe too much. Lots of unanswered questions like will I be here in a year, what about five? Each time you lose some of your abilities, what will remain this time? Will I grow a garden again? Will, I still have Cows, Donkeys, Sheep, and chickens? Will I be able to build stuff, work on cars, tractors, and the house? It is real thoughts and dreams, hopes and fears. Part of me will be lost this time as well, but what will remain, and will it be enough to build from?

   Last night I sweated so much and I noticed the signs of dehydration, another danger, so I rehydrated. Water and Gatoraid have surely been my saving grace so far as I have done this often already. Last time I didn't know what to expect and was caught off guard, this time I still don't know because there is a difference like a day and night between the treatments, just as the Doctors said. I'm expecting the worse yet gathering better that I had prepared to get.

  So maybe I beat this stuff and maybe I don't. That said, I feel I have the best medical people that can be found and the hospital that matches them. I think they are all good people and doing their very best. I go next week to get set up with the Gamma Knife people and I will be glad that is over with. That will be 1 tumor down, 2 to go. Freaky It is in the brain but blessed it is where it is, they can remove.

UPDATE:


   Already running a temperature of 99.9 and feeling some effects on dehydration so not so fast Dr. Pepper, hello Gatoraid and coming shortly afterward, the water that has been alkalinized to a Ph 10. Not purified, no chemical, just good clean water.

   Also, Denise got me a Wedge pillow that I can't wait to sleep on. I'm looking forward to that tonight and a trip to Yoder's Market tomorrow, I think going with her to the Jeep place may just be too much. I always like to walk around the lot when we go and that would prove to be a bit too much. Never thought I'd get this excited over a pillow.         

Thursday, July 4, 2019

July 4th 2019

Happy Independence Day


   I haven't had any adverse effects today from the chemo, they usually hit the next 2 days but are so much milder than the throat cancer chemo was. I have had a lot of blood come up, and I mean a lot, like enough to fill a 10oz bottle. 

  Last night I woke up about every hour on the hour laying in a puddle of sweat. I would move out of it, stay awake a while, then move to another spot only to awake to it about an hour later. I did that until 5am when I just gave up and stayed awake, falling asleep in my chair which lasted about an hour. 

  About the bleeding... I noticed when I ate the Philly Steak sandwich from Hell it got it stayed off real bad. It slowed down until I got hot then it was right back on. The duration and amount have increased. I done a really dumb thing, went into Lowes with my O2 and through the plant section. I headed for the bathroom and did not believe I would make it back. Note to Self: stop the prideful feeling and learn to live without it. So I know that what I eat affects it, the heat affects it, so it must not be the tumor that is bleeding. 

  Tonight I got to bed with a Temp of 99.1. Denise says it is the chemo but I think we both know better. Makes me wonder what kind of infection I had that would drive my WBC to 15K and after enough meds to fix a horse still are at high 11K. 

   Got a call from the one who did the Biopsy in Knoxville at UT for a follow-up. Does that tell you where I'd be if I would have stayed with UT? Here in Morristown Hamblen Hospital, I've already done 2 chemos and 6 radiation treatments. I also go the 11th to set up for the Gamma Knife. The Team I have now is far more superior than the one I had.   

Wednesday, July 3, 2019

July 3rd 2019

Chemo # 2 Radiation # 6 Day

   Me and Denise went to the cancer center early this morning and got started. They gave me an anti-anxiety med, think I'm ready to leave that one-off next time. The Nurse asked if I wanted it and the coward in me that remembers the horrors of the head & neck treatment says no, I'll take it.

   I have a port this time, something I declined at UT with Head & Neck Cancer. Let me tell you, this is the bomb with very minor inconveniences. There is no pain associated with this and it is much easier on the Nurses and you to have one. When we finished we went to the radiation area but they were swamped, so I had to come back that evening. My mother went with me. Charlie offered but he is getting worse and he knows it, we talk a lot these days.

  The bloodwork I'm sure had some bad stuff in it but one thing mentioned was my white cells counted over 15K. They had dropped to 11K, which is at the top of being bad. This may be where an infection or bacteria grows and the drugs and eventually the fever breaks out.

   I saw a food truck that said it has Philly Steak and other stuff on parked. I decided I would get some and went back. That Philly Steak must have had extremely hot something in it, halfway through my throat started closing up from the swelling and the bleeding went wild. I left the other half for Denise in the Fridge, telling her what it had done to me. It didn't bother her too bad but even she found it spicy.

  We got a call from Thompson Survivor Cancer Center on the Gamma Knife. A meeting is set up with Rick in Sevierville the 11th. He will make a determination if I am a candidate for the Gamma Knife, but everybody seems to think I am. The small tumor on the brain in a place that is easy to get to.

   I am not sure just how much one can endure, or how much one can overcome. By his self, none, with God, only He can answer that question. I am resolved to fight once again until I cannot.    

Monday, July 1, 2019

July 1st 2019

Happy Birthday to my oldest daughter Misty, she turns 40 today. 


   Fevers on and off all night last night but eventually subsided. 4th Radiation treatment today then the Nurse said Dr. Anderson wanted to see me. The Nurse checked my vitals, I once again had a low grade fever. I told her I had been like that all weekend long. Dr. Anderson showed me pictures of what the tumors look like inside and how the radiation is aimed. Then he encouraged questions. This is a man who wants the patient to be in the loop of what is going on, the mark of great care and kindness. Denise's main question was what happens after the CT Scan if it shows the Pleural effusion shows a change. So I asked Dr. Anderson and he said since there wasn't enough to draw from that they are considering it to be just an infection. We will continue this path no matter what turns up. 

   I didn't tell him but I do not question what he does because I feel he has my benefit in mind. He has so far. Tomorrow they will draw blood in preparation for my second chemo on Wednesday.  

Sunday, June 30, 2019

06-30-2019

   This has been a rough day. I slept well last night but just could get going this morning. When I did finally work my way to the couch I broke out and stayed in a sweat, looked like I had got out of the bathtub, plus ran a fever of 100. I coughed up a lot of blood again today.

  The steroids are making me ill so I have to check my filter as to what comes out of my mouth. It is hard to be jolly and hurt plus have those things in your system. I just hope the ones that are around me know and overlook. 

Saturday, June 29, 2019

June 29, 2019

  Rough night last night, I had forgotten just how bad this stuff can really be. I've slept finally from about 9:50am to 1:00 pm, and I'm about to do this again. Denise asked where I felt bad at and my answer is everywhere. That is hard to get someone who has never had to do Chemo or Radiation, you just can't explain "everywhere". We're talking bones, body aches, muscles... almost everywhere. \


  So this morning about 8:00am I took a bath, washed my hair, got dressed and Denise got ready too and we went to the Jefferson Farmer's COOP for chicken feed. 157.00 dollars worth. Hello, it is called chicken scratch and usually means cheap.  

   We came back and Denise unloaded the feed. She has taken over my chicks I hatched out, something I sorely miss doing. She claims there are at least 200 chicks of various sizes, and Denise is probably right. I don't know what if anything I was thinking but I set a lot of Maran eggs and then later Guinea eggs. I didn't set any Auranca eggs, I've lost the genetic control for pure blooded birds. No Turkens, Denise hates those birds. I set them as if I was going to be good to care for them, but here I am, not being able to. There Denise is having to do it all. We have about 100 chickens that are adults. 

  I had all these plans on building some new pens but in the end, none of them got done. We make plans and God laughs.  

     

Wednesday, June 26, 2019

And Now We Begin..............

   Today is 06-26-2019. Today has been so well built up for and a long time coming. Today I started my chemo and radiation. I will do this for two weeks then they will run a CT Scan to see if the Pericardial Effusion and see if it has expanded. If so it may indicate cancer has breached the wall and can spread all over the body. Let us hope that isn't the case. Since the cancer is in the brain and both lungs I am listed as a stage 4. He says too that because of the lethal doses I took of chemo before, he didn't think my system would tolerate it well. He is looking for my T Cells or Nutrifils to weaken too much.   

  So after I get my blood drawn we get to talk with Dr Flanners. He is less optimistic but a realist. He said he could quote me stats on expected longevity and I could even find that myself, but it would reflect old data. I remembered reading about Throat Cancer and how the odds are slim to none on survival, yet here I am 9 years later. For the matter, Charlie is still here, though he has non-small cell lung cancer. My wife told him I was nervous about the chemo, the last chemo I did was like falling into Hell for a week after, and worse than that while it was going in. Oh, there was such pain, pain that lasted for days. Dr Flanners said they would give Attavan in my Port. 

  As we walked into their Chemo Hut it reminded me of how UT Hospital was set up when I did mine, one big room. The chairs are old just like UT was. A few Nurses greeted us and they came by with a bag that local churches donated. Inside was a puzzle book, small Bible quotes book, pen, lotion, chapstick, a letter from the Nurses, I think soap and some other things. UT didn't and to my knowledge still does not do anything like that. I had my pick of chairs, they weren't very busy but still busier than I would want to be. There was just one community TV hanging on the Wall in our section so they changed it for Denise since we were the only ones in that side of the room. It was time for Lets Make a Deal and the Price Is Right to come on. The Benedryl it first just in case I had a reaction and it almost put me to sleep so I knew the Attavan was going to finish it, and it did. I kept waking up, sometimes to people staring and sometimes to people not paying attention. One lady looks at Denise and said you poor, poor woman, and we all laughed. 

   After that was all said and I took my first radiation dose. I was nervous, oh my was I nervous. It is nothing like head and neck cancer where the bolt you to a table the tie your feet and hands together. I had to be sedated almost every time I did one, and I have done plenty. Again, this was nowhere near that. As a matter of fact, I'm driving myself there today.         

The Wonder Of It All...


   Let me start by saying I do not believe in coincidence. We left UT Hospital and I was in major pain. This Nurse that was in the recovery room observed nothing nor heard any of our concerns. They were just interested in an assembly line, keep them moving. Yet in light of this, I still called UT Hospital my cancer doctors. Oh my, how the mighty has fallen. 

   Denise came into my room looking to see if I was awake yet and when I spoke up she was shocked, I had not slept any. She had to help me get up and I told her I needed to go back to UT, something just wasn't right and I could not breathe. We took my temperature the first time was 99.3, but a later reading was 100.3. A call came back from the dept that done the surgery finally and they said to go to their ER. 

  We loaded up in Denise's Jeep and almost as soon as we were aboard the pain went from a 7 to a 10, I was smothering. I told her I would not be able to make the trip. She asked if she should call 911, but upon thinking that they would have me lay down thus cutting off the air. She asked what I wanted to to do, where did I want to go and Morristown Hamble Hospital was the closest one. For years, well actually to be exact, since 01-31-2005 I had told people better care could not be found than their Cardiac unit and a better heart doctor could not be found other than Dr. Rama. Then I would add, nothing else would I go there for. 

   When we arrived there it was like day and night, I have been to UT's ER before and they make sure the paperwork and money are lined up before they could see you. When Denise explained what was wrong they got me right back and told Denise she could finish the paperwork back in the room. Oh wait, did the Patient actually come first? I told the ER Doctor what I suspected happened and he actually listened and started addressing that issue. My pain level was at 10, and I could not get a deep breath and without a deep breath, I could not get the infection in my right lung. He started me on antibiotics and working to bring down the pain level. Once the pain level went down and I could breathe and drink some water I was able to cough up a lot of blood. This freed up my ability to clear the right lung and set a path to recovery. What was taken from this is how the Doctor and Nurses listened. 

  Later on, a lady came through that was called, if memory serves me well, a Hospitalist. They had been calling UT to see about my transportation as we initially stated was our desires. By that time though we had met with Doctors and Nurses and was considering changing. We had tried to get to UT but were unable to get there and now I wasn't sure who was the best and who had our best interest in mind. So I asked if we could just stay. They found an open room and to the room we went. 

   Once in the room, we were given a menu, I was hungry again. We had Nurses in and out all day and night. In walks Dr. Rama, Denise's boss, and my Cardiac Doctor. He wanted to check when he saw the run of V-Tach I had run. They hooked me up to a monitor and watched the whole time I was there, apparently having only the one. He asked if we had seen Dr. Anderson that Dr. Rathfoot had set up with or Dr. Flanders Onocologist. We said no and  Dr. Rama set the meeting up. Before we went to bed that night both Doctors had paid us a visit. 

   Dr. Flanders came in first and talked and he made sure that even I with my limited knowledge of cancer and the way he would treat it. Then came Dr.Antherson who also took his time and made sure we understood everything. Me and Denise talked that night and decided it was in my best interest to switch care groups. They had not only moved with intent, but they also seemed to actually care. I had come into this Hospital thinking this would be my last day and two days later I am sitting up in bed and mobile. It was nothing short of a miracle. 

  A lot of things had to take place for me to end up there, and a lot of things did. Morristown Hamblen was a Hospital I had never thought more than a heart attack hospital, the rest were horror stories that pass around. I'm sure some are justified, it is a big place and treats many people. Now from what I experienced, I hold Morristown Hamblen Hospital equal to Vanderbilt, and that is saying a lot. I will never view this hospital again as a last resort but as a life-saving oasis full of people that actually care.    


  

More Background Info

   The doctor and nurses went in and out of my room and worked tirelessly, they cared and that I and Denise could both see. The doctor actually listened to me and my thoughts and complaints, and really listened. I felt if I could drink enough water then cough without pain enough to get under this mess of infection and blood being held in the lower left lung I could turn the tides. When the doctor asked what kind of pain meds I was taking and we said none he was shocked. I was running a fever that kept going up and down, maybe that made sense to him, it sure did me. An over-the-counter pain patch trumped then the Morphine, which had little to no effect. 

   Over a period of the next couple of hours, maybe more, the pain subsided to a manageable level and I began to cough. It didn't take lung to cough up a serious amount of blood. The fever was leaving me and I could move a little. People know when something is wrong and can sometimes pinpoint what that something is. Great Medical people listen. The left lung had 2 places lite up during the Pet Scan, one was a tumor and the other was a lymph node. The lymph node was said to be benign while the tumor was malignant. It has cut off the lower lobe of the lung so the doctor cauterized the tumor in an effect to open the lobe up. Once opened it was full of bacteria and pneumonia, that is what we were told. So apparently cauterize a human it must be different than a cow. We had their horns cauterized and the bleeding only lasted a day, less that one actually. From the 31st of May until the writing of this, June 26th, 2019, I still bleed. 

   They came and told us UT said they were full, diverting people away. By then the care we'd be given were causing us to have second thoughts. I had an appointment with the Oncologist at Morristown Hamblen Hospital scheduled for Thursday, and the Radiologist at UT Friday. The Staff had found me a room there and we decided to stay, I still wasn't in too good of shape to be moved. We were moved onto the First Floor. Dr Rama, while making his rounds noticed a run of V-Tach, then noticed it was me, Denise's husband. So he stopped in to check on us. While he was there he sang the praises of Dr Anderson (Radiology) and Dr Flanders (Oncologist). He thought we should talk to them and since we hold Dr Rama in high esteem we agreed. Meanwhile, Nurses ran in and out, I wasn't out of the woods yet. He told our Nurse to contact them and talk to us tonight. She did contact them and sure enough, they showed up. Dr Flanders was first and Dr Anderson said he'd come back... and he did. They did something that nobody aside from Dr Soto at UT did, they listened. Along comes, Dr Mehiji who also listens and like the other Doctors there makes some quick moves since progress had been at a standstill for so long. 

The next pain was since all my records and tests were at UT getting them to Morristown Hamblen, and they did that too. They were finally all put together and looked at, then Dr Flanders and Dr Anderson came again to my room and explained what they saw. The came separate but each was super nice, neither thinking we were about to switch. They came in and took their time explaining things. From knocking at Deaths Door Wednesday morning until now, Thursday night, it was nothing short of a miracle. Friday as they visited we asked if they would treat me. I would be honored and at peace, if they would. They both asked if we were sure, and to that, I have never been surer of anybody.            

  We get home and Dr. Callous (name) called and asked if we had my records changed to Morristown. Denise informed him we would no longer need their services. Here is a Dr who does his own calls, so that is a plus, but does nothing else about them. The entry into the back into the lung left me in a Level 9 pain, but that was ok, it would get better... not. The right side biopsy which left me bleeding and to date still bleeding, which is a touch strange. I was to meet with Dr Anderson for consultation, which went well since he is with Morristown Hamblen Hospital, the other doctor I was to meet was at UT and judging by the speed they were working me up it would have been another week or two.

Now come Friday I got discharged but after Thursday's installing a Port. The Nurses, Staff, and doctors make the hospital what it is, and UT had fallen way short. Maybe they could still be Level 1 Trauma but with all that money they spent on a new cancer building they forgot to incorporate the main thing... Care.  
  


Friday, June 21, 2019

So where are we now?


   Charlie once again has Throat Cancer but I found out since we last wrote it isn't the same type cancer, it is small cell cancer. He has good days and bad, but lately has slowed down on mowing and very little trim work. So Charlie basically has progressed to the point of semi-functioning. He makes a joke about it because he will be 80 years old this August. Tina, my biological mom I must say has stuck right there with him, and she has a plate full. William has since gone on dialysis, had a TIA, and went Septic. So that makes 2 ways she is being pulled watching, I am now once again the third way.

   So, where do I begin? This is coming in a tad late just like I started the Throat Cancer Blog. In no way do I blame anybody for this disease starting back beside me. So I guess I will start at the beginning. For a month or two I began coughing up a little blood. Over time, it became harder to hide until finally, I couldn't hide it. I had a follow-up with Dr Rathfoot and decided we'd tell him, well Denise decided we'd tell him, about the bleeding. He listened and heard a low rumble/rattle type noise. Dr. Rathfoot wanted a CT on the chest area, 3 places showed up. Could be something, could be nothing, except they all would turn out to be something. This was done May 3rd, 2019, the start of it all. Dr. Rathfoot got me lined up with another doctor which passed me to yet another doctor who passed me to his partner. Meanwhile the Oncologist I was told I would see also changed. So now you can probably see why testing seemed to go on forever. UT Hospital dropped the ball, and I was the ball. 

   The words that Dr Panella said to me about how head and neck cancer follow the "Tree" Head, Throat, Lungs rang through my head. I have started and stopped smoking 1000 times since the Throat cancer, but I started 1001 times. I've noticed some things more since I have quit this time, quit smoking Cold Turkey. Now I have to ask myself, why does a company that makes their money want you to quit? Easy answer, they don't. 

   Back to the story: UT Hospital still had no course of action planned in over a month. During that time they did a CT, Pet Scan of the body, a CT assisted lung biopsy coming in the back. I didn't understand why they did the lowest tumor in the right lung using a bioscopy and not the left.... 2 weeks later? Why wait? 

   As we got in Denise Jeep we started out back to UT Hospital, they had called us back saying come to the ER, not to them. It hit me as we went up the driveway and I told Denise I would not make the trip, I simply was in so much pain that I would not be breathing that long. She offered to go back and call 911, but I knew if I laid down there would be no getting back up. She said Morristown Hamblen Hospital or Jefferson Memorial, I picked Morristown Hamblen. I was out of breath as we entered the ER, lucky for us we were it. She explained to the Nurse and they told her to get me right back and Denise filled out the paperwork. They were more concerned with me that paperwork. 

   The ER Doctor walked in and nurses were everywhere working hard. They asked what kind of pain meds I was on and shocked when we said none. I told them I had bled a lot since the Bronchoscopy where he Cauterized the tumor and opened up the lower lobe of the lung.  I first thought he said it would free it up and he gave some stiff antibiotics to clear it up. 2 weeks later and I'm still bleeding but I no longer have Pneumonia bouts. The doctor and nurses cannot believe what they are hearing. I told them if the pain level would go down and I could cough some of it up some of the pressure would be relieved. They agreed and we tried Morphine, which had no effect. Then a coule of other things, they also had no effect. He used an over the counter arthritis type patch and it worked. They call UT Hospital and told them they had someone there that was their patient but was told they have been diverting patients. Could that have been the reason I wasn't kept despite the pain after punching a hole in my lung from the back? So we stayed. 

   It is late tonight and I am stopping, but much more to come.