A little bit of bad news on newest cat scans

I have been focusing on debulking the lung tumors with surgery in Feb. and again in Oct. and had pretty much stability on the liver tumors. I have three large tumors. The largest one remained stable, but sadly the other two are taking off again. They have made a referral to the radio embolization folks at Northwestern who happen to be the best in the world to see if they can do a fourth operation on my liver. Usually the third one is it because the liver begins to decline with the radiation and little beads they block off blood supply to the tumors. I will find out next week if they are willing to chance another surgery. I am rapidly running out of rope, and the PRRT trial at Northwestern which was suppose to begin in January has been postponed, and it may be months before I can get in the same, and apparently Northwestern is referring folks to the Swiss for the PRRT but it is close to 30k plus three flights and three weeks of hotels as you take the treatments in Europe. The funny thing is that the last three weeks I felt great. They will be putting me on bone injections to strengthen my bones as I will be breaking them apparently where the mets have set up in my spine, which apparently is very very painful, and they try to strengthen and buy some time.

I feel so fricking lucky. Without the first liver surgery, I should have been dead two and a half years ago. Tampa has the best Endocrine oncologist in the country who are internationally recognized, but Northwestern has the world leading radio embolization breakthroughs as they are able to go after more aggressively topical tumors on the liver which five years ago simply was a one time shot, and it could not be repeated. I think of so many good people who because of circumstances did not have the opportunity or logistics to get to the best, and are no longer here. I have no answers why I am still here, but the phone call ten minutes ago from my doctor does not bum me out a bit......I have lived my life, and will fight to my last breath. I am more pized trying to get my antenna on top of my 35 foot flagpole as we have had a huge drop in temp below freezing and my lull will not start. So we have tarped it, and have put a heater under the all terrain forklift, and have the engine block warmer connected with battery charger going full force. Wife went to get the pizza, and afterwards I will try to start it and have her raise me 35 feet in the blowing wind to attach the directional antenna under my light on top of the flagpole......life goes on.....chit happens.....you just go with the flow.

You have been on an amazing journey Mr. Oats and I am gratified and amazed at your personal resilience and durability in the face of a very dire circumstance. May you continue to find the strength to endure what is left of an amazing life you have had . . . . let us hope that is in the distant future.

knothead wrote:You have been on an amazing journey Mr. Oats and I am gratified and amazed at your personal resilience and durability in the face of a very dire circumstance. May you continue to find the strength to endure what is left of an amazing life you have had . . . . let us hope that is in the distant future.

What knot said, in spades!!!

It is really nothing amazing. It is the variable nature of endocrine cancer. Some are gone in a couple years even though it is known as a slow cancer, and some can last 10 years. Steve Jobs lasted 7.5 years, and I am at 8.5 years. When his liver was covered with mets, he opted for a new liver against doctor's advice. University of Missouri obliged him and he was dead two years later. The thing which is so fricking mind boggling is that I was feeling great the last month. Like I had whooped up on cancer and was starting to get the upper hand. During this time two of my liver cancer mets were growing like weeds, and thankfully my big five inch one was stable, but I was feeling great. When I have been in the most pain has been when there is necrosis on the liver tumors which means I am winning the battle. I could be dead in a month, or I could live another two years and after awhile it is not some great attitude I have, but the simple realization that you just have got to live your life despite the cards which have been dealt.

If they do another radio embolization of the liver tumors, I will be at a much higher risk of mortality, but my options are realistically getting slimmer and slimmer. Hell, I never thought I would make medicare, and now for two months I have gotten both 30mg sando shots without Medicare putting a stop to it. That alone has been a miracle, because five years ago I saw grown men crying because they could not get the second shot and were limited on resources and options. So maybe the government realized that second shot was keeping people alive, but my quality of life has been excellent but for some pain at times and being completely worn out I am very happy.

Keep fighting and I will keep you in my prayers.

Once more....please be careful. It does not take much to get a broken bone where the metastasis is located.

Apparently, things have been disclosed on the newest scans which have the docs scrambling. I just got a call that they want to map internally my liver tumors. There will be an incision and they will go up my arteries and will map the two rapidly growing met tumors on my liver. They will devise a plan to block arteries, and set the radiation dose for my next surgery which will happen at the end of the month. This has been rather sudden and I was surprised they wanted me Friday as it takes a day or two to usually recover because even on the mapping procedure they place radiation on the liver, which means I cannot be near the grand kids. I hope this will not make me ill for the superbowl party because we have been doing the same with high school friends for over 35 years. Oh well, another adventure and the irony is I was feeling pretty good in January......Cancer is a sneaky devil who right when you think you are getting a little ahead, it smacks you upside the head.

2seaoat wrote:Apparently, things have been disclosed on the newest scans which have the docs scrambling.  I just got a call that they want to map internally my liver tumors.  There will be an incision and they will go up my arteries and will map the two rapidly growing met tumors on my liver.  They will devise a plan to block arteries, and set the radiation dose for my next surgery which will happen at the end of the month.   This has been rather sudden and I was surprised they wanted me Friday as it takes a day or two to usually recover because even on the mapping procedure they place radiation on the liver, which means I cannot be near the grand kids.  I hope this will not make me ill for the superbowl party because we have been doing the same with high school friends for over 35 years.   Oh well, another adventure and the irony is I was feeling pretty good in January......Cancer is a sneaky devil who right when you think you are getting a little ahead, it smacks you upside the head.

Fingers crossed for a favorable outcome.

I spent the day yesterday emptying my desks and collecting files. I am assuming I will probably have to shut down one of our business interests this summer and I began cleaning. We purchased a new computer and two 40 inch tvs which I will use to set up monitors in my office at home to work out of the house as it appears the hour plus drive to the office is going to start getting difficult. With my assistance we have spent the whole day clearing out files and started a burn pile in the back yard as we are burning old records as I review them with my wife, and file ones she will need after I pass. I hope to have the office clean this weekend so when I pass my wife and daughter can spend about an hour to clean up a few things. I had a dining room table which my parents had in my office, and I have a scar on my forehead from three years of age where I opened my head up running into the dining room table. We will be taking a trailer to the office and filling it with boxes of files which I will sort and we will burn. I will burn the dining room table which has a great deal of sentimental value to me, but will just be one more piece of junk for my kids and wife after I pass. I have been blessed that this is slow, but it is incredible what we have cleaned up in the last two days understanding that my health is getting very serious and it needs to be done.

How did you first find out you had this cancer, Oatie?

My GP had referred me to an allergist who said I had asthma after six months.  I was increasingly getting very bad pneumonia episodes.   The last one almost killed me when I went into the allergist and politely said I was going to get a second opinion because it was not asthma which was causing my problems.  I went to a new GP who immediately ordered an xray and was stunned the allergist never did an xray of my lungs.   He also was stunned that I never had a breathing test which checked for obstructions in my lung.   He took the xray and said seaoat I do not see any tumors, sent me to the hospital for the breathing test and they found my lungs were obstructed and made an immediate referral to a pulmonary doc.  He slaps the xray up, and there are five lung lobes two on the left and three on the right.  My upper left lobe had a line through it, and he said I had been walking around with a collapsed lung and he ordered a bronch where they took a biopsy of a tumor which had collapsed the lung.  They sent the tumor biopsy to Mayo, and I started getting all these calls that I had a rare cancer called endocrine cancer which was atypical and aggressive and I had to have the tumor and my left lung lobe removed.   They cut it out, but failed to put me on sando monthly injections and three years later it spread to my liver where it created a large two inch tumor on the liver........it grew to five inch and two more tumors grew.  In December of 2015 I had another bad pneumonia and went to a new pulmonary doc at Northwestern and I now have four marble size tumors in the lungs, but have had two amazing debulking surgeries which allow me to breath, and as long as they stay high in the bronchial portion of the lung they can do maintenance and I will live.  If any new ones come in lower, I am done.  In October during the second debulking operation the cat scan revealed I had mets in my bones in the rib, collar bone, and two in my spine.  I will now be taking a monthly bone injection, and finally the last cat scan found the two smaller tumors on my liver have gone ballistic and at 4am Friday morning I travel to Chicago for my fourth liver operation.   My liver will not be able to survive much more radiation and as remarkable as it is that I am still alive, it is purely the blessing I have been in geographic proximity to the world's number one radio embolization team at Northwestern University.   To give you an idea, my cousin's husband died of my cancer and went to the top 3 endocrine cancer facility at Moffit in Tampa when they lived in Birmingham.  They were only able to do one operation of radio embolization and he got a year and a half and was dead.   I am two years and now looking at my fourth procedure.  Five years ago one procedure, today four, but it is certain I will die.   I have just been blessed with a little more time.  It will be miserable, but the slow nature of this has given me more happiness than I could have ever imagined and my grandchildren.......wisdom I have been gifted with pain which has finally got my priorities correct.

A nightmare.

A nightmare.

Not at all. I am an extremely mentally strong person with an amazing support system of friends and family. A nightmare is getting off the school bus and finding out your father has had a stroke, and at ten years of age you knew you would have primary responsibility to take care of an alcoholic mother who no more could run a business, and a seven year old brother who was hyperactive. You see a man dying in his mid sixties is not a nightmare or even a tragedy, it is simply the cycle of life, but children going hungry, being neglected, or becoming an adult at ten......yes.....maybe not a nightmare, but certainly not one of your better dreams for any child. I have lived an amazing life and have no regrets. I have done good things and helped many, but I have also displayed greed and self interest which blinded me toward the needs of others. I am a poker player. You play the cards which you are dealt, and in never is about winning or losing because that does not define who you are......it is simply playing the game the best you can, and most important finding humor and fun in the same.

Surgery complete. Some good news and some bad news. They put the surgical device into my arteries in the groin. No big deal. Because of the bone mets they were kind enough to give me two pillows and did not have me keep my hands above my head for long periods during the scans as they were moving the surgical tip to the vascular structures on the tumors on my liver. The doctor explained that necrosis had set up on my largest five inch tumor. However there are two tumors on my left lobe of my liver which have been growing aggressive and have to be dealt with on my second operation on February 27. The doctor explained he is not even sure he can find a clear path to those two tumors, and secondly, I am approaching the threshold of radiation the liver can tolerate.

So during the procedure they have an intravenous sedative drip which allows me to follow their verbal commands to take a breath in.....stop breathing, just like you are doing a cat scan, but they have the device in your liver mapping radiation plan for the next scan. During the procedure I hear the doctor say, that is interesting. I ask.....interesting in a good way, or in a bad way? He responds in a good way. Now with my head higher, I got to look at my vascular structure in the liver as they moved the device through the arteries. Endocrine cancer tumors are very vascular and respond well to radio embolization where they use very small beads and block the arteries on the tumor and then radiate a small area inside the tumor which puts as small of a load on the liver. Well the good news is he found an artery into one of the two aggressive and growing tumors. He will radiate this on the 27th using the same groin entrance and cat scans as the advance the medical devices. The bad news is that they have no clear path to the second tumor, and will have to use Chemo on that one. Chemo is not very effective on endocrine tumors and is a distant second if you have a clear path to a tumor. So the plan is to zap one of them on the 27th, and wait and see on the last tumor as to my blood levels on the hormone tests, and my symptoms.

I just feel blessed to be among the best minds in the country, and I might add both of my surgeons are Muslim. They love me because two years ago I chewed them out that the whole procedure was becoming a Cluster F. They were piszed at me and I told them that my scar tissue under my left armpit where they removed the lung makes it really difficult and painful to keep my arms in the air behind my head for two hours. They apologized and said the nurse should have when they were not doing active shots, put my arms in side slots where they could rest until the next scan where they needed my hands above my head......I do not think they were used to a patient chewing them out, and he was late in a post op review of the surgery by a half hour, and I left my card and told the nurse to have him call me because my time was as valuable as his time.........I do not take chit from anybody, but suddenly I was this docs best friend, and when he came in to greet me this morning at 7am he lit up and loved talking to me. I told him as a patient I will tell you when I think your treatment is callous toward patients, and I will tell you when you have done a good job. I thanked him from the bottom of my heart for two years of quality life. He said since you talked to us we have been more concerned about how long patients have to hold their hands behind their head and we appreciate your constructive but firm input as he smiled.....Mrs. Seaoat just started laughing , and the two of them laughed a little too long for my liking, but I am blessed that some fascist did not stop this talented human being from coming to this country, going to Northwestern, and giving me two more years of quality......little things matter and each of us can improve the world we live. Overall a long day, and maybe not the best news, but damn it feels good to know that I have had an opportunity to be around these skilled and intelligent surgeons.