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. 

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.  

     

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.  

  

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.